Palliative care in Romania

Agência: Ad Médic | Design/Ilustração: sara menitra 

European Journalof 

PalliativeCare 

THE JOURNAL OF THE EUROPEAN ASSOCIATION FOR PALLIATIVE CARE 

Palliative care 

18 th - 21 st MAY 2011 

Lisbon Congress Center 

Abstracts

EAPC 2013 

INVITATION 

13 th CONGRESS OF THE EUROPEAN ASSOCIATION 

FOR PALLIATIVE CARE 

Scientifi c Committee 

Lukas Radbruch, Germany (Chair) 

Ladislav Kabelka, Czech Republic 

(Chair of the Organising Committee) 

Joachim Cohen, Belgium 

EUROPEAN ASSOCIATION 

FOR PALLIATIVE CARE 

www.eapcnet.eu 

Agnes Csikos, Hungary 

Stein Kaasa, Norway 

Wojcek Leppert, Poland 

David Oliver, United Kingdom 

www.paliativnimedicina.cz 

www.eapcnet.eu 

30.5. – 2. 6. 2013 

PRAGUE 

CZECH REPUBLIC 

SEE YOU IN PRAGUE! 

Sheila Payne, United Kingdom 

Sabine Pleschberger, Austria 

Eshter Schmidlin, Switzerland 

Ondrej Slama, Czech Republic 

Congress Organiser: 

INTERPLAN 

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80687 Munich, Germany 

Phone: +49 (0)89 - 54 82 34-73 

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Email: eapc2013@interplan.de

12th Congress of the European Association for Palliative Care (EAPC) 

Lisbon, Portugal, 18–21 May 2011 

ABSTRACTS 

EAPC 

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ITALY 

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Published by 

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Communications 

publishers of the European Journal of Palliative Care 

a division of Hayward Group Ltd, The Pines, Fordham Road, Newmarket CB8 7LG, UK. 

Printed by Williams Press Ltd 

12th Congress of the European Association for Palliative Care, Lisbon, Portugal, 18–21 May 2011 

3

Foreword: Palliative Care – Reaching Out 

Dear Congress participant, 

Welcome to Lisbon 2011! 

As I write this introduction, news reports from Japan are coming through, telling us about the 

earthquake and tsunami, and now, too, the threat of nuclear disaster. It is hard to witness the suffering 

of those who have lost their loved ones, their homes and all their possessions. Our hearts and minds 

reach out to our colleagues in Japan who we know from conferences and collaborations. 

Help and support is needed for those whose suffering is felt acutely in Japan after these 

catastrophes. However, our job as providers of palliative care is somewhat different: we have to 

relieve the chronic suffering that goes with life-threatening illness, and provide continuous care for 

patients and caregivers. This ongoing suffering may be less visible than the devastating events 

depicted in the news, but patients and families need help and support as well. 

To provide optimal care for all terminally ill patients, we need to develop and implement palliative 

care; this requires research and education. In correspondence with this requirement, the EAPC has 

recently reformulated its mission statement; it now reads, ‘The EAPC brings together many voices 

to forge a vision of excellence in palliative care that meets the needs of patients and their families’. 

The EAPC Congresses are a major instrument in helping to achieve this goal. They are 

acknowledged as being platforms for the exchange of new information, the discussion of new 

research results, and the provision of up-to-date education and training. We are looking forward to an 

exciting Congress in Lisbon and to meeting colleagues from all over Europe, as well as other regions 

of the world. 

We have come a long way since the initiation of modern palliative care by Dame Cicely Saunders in 

1967 at St Christopher’s Hospice. In some countries, the provision of palliative care is approaching 

full coverage of the population, and many countries are directing their efforts into integrating 

palliative care into the healthcare system. However, different countries use different services and 

models of organisation, and striking the balance between palliative care as a specialist field, and as 

a public health approach, seems to have proved challenging. 

We should also realise that palliative care is not established in all of Europe, and we have to reach 

out to those countries that have not advanced as far in this journey. The EAPC provides expert 

information and guidance on a wide range of palliative care topics, from symptom treatment to 

organisation of care. The EAPC White Paper on standards and norms may be used as a model to 

develop national strategies or guidelines. 

However, the exchange of information and experience is never a one-way street. The pace of 

development in some countries has been quite astonishing, and I have found more than once that I 

have learnt much from the new and speedy advancements in these places. Following the political 

changes of the last few decades that have opened opportunities for palliative care pioneers in these 

regions, profound changes have been made to the healthcare systems of some eastern European 

countries. This has had the result that major advancements, such as legislative changes and 

4 12th Congress of the European Association for Palliative Care, Lisbon, Portugal, 18–21 May 2011


Foreword: Palliative Care – Reaching Out 

implementation of national strategies, have been achieved. The recent report on palliative care to 

the Parliamentary Assembly of the Council of Europe 1 has identified centres of excellence in Poland, 

Russia, Hungary and Romania that set examples for western as well as central and eastern Europe. 

As palliative care is developed in more and more European countries, we want to reach out to all 

new national associations and invite them to join the EAPC as collective members, so that they 

might benefit from the exchange of ideas with other members and participate in the development of 

a European palliative care culture. The Lisbon Congress will offer an overview of the work of the 

EAPC and its members, and the opportunities they have created. 

In addition to the collaboration between various European countries, the EAPC also wants to reach 

out to other continents. In particular, it would like to offer the opportunity of collaboration to 

countries across the Mediterranean – northern Africa and the Middle East. The Congress 

programme includes contributions from the aforementioned countries as a first step towards this 

collaboration. This is done in close liaison with the African Palliative Care Association. 

The Portuguese language spoken by our hosts in Lisbon also facilitates a link across the Atlantic to 

Brazil. Close links exist between Latin American and Portuguese palliative care professionals, and 

this is mirrored by the Congress programme – for example, there is a joint workshop in the 

Portuguese language. 

Reaching out to these colleagues and collaborators working in different cultures and settings, we 

expect to have rich discussions and an abundant exchange of ideas. The Congress programme 

encompasses a wide range of topics, covering all areas of palliative care. Plenary lectures are on pain 

management, spiritual care and the philosophy of palliative care, but the public health approach is also 

covered, along with palliative care as a task for society. Other plenaries include examples from 

Romania and South Africa, as well as an international perspective on palliative care in Europe. There is 

a rich selection of symposia to cater for all tastes and needs, including smaller sessions in the morning 

to meet experts for direct discussions – not to forget the oral presentations and the poster exhibition 

area, where so many of the participants contribute their personal research results and experiences. 

One of the highlights will be a report from the pioneering days of palliative care, delivered by the 

winner of the Floriani Award, Mary Baines. This will close the circle from palliative care in its first 

inception to today’s state-of-the-art services. I hope that it will also allow us to reach out towards 

tomorrow’s palliative care as an integral part of healthcare for every patient who needs it! 

Lukas Radbruch 

Chair of the Scientific Committee 

President of the EAPC 

Acknowledgements 

I want to thank the members of the Scientific Committee, the Advisory Board and the Organising Committee, as well as 

the reviewers for their contribution and commitment, as the Congress would not have been possible without their help. 

Special thanks go to Heidi Blumhuber and Amelia Giordano in the EAPC Head Office in Milan, and I am sincerely grateful 

to Congress Officer Farina Hodiamont, who held all the strings together and wove them into a Congress. 

Reference 

1. http://assembly.coe.int/Main.asp?link=/Documents/WorkingDocs/Doc08/EDOC11758.htm (last accessed 21 March 2011) 

5

Committeeslenary X 

SCIENTIFIC COMMITTEE 

Lukas Radbruch, Chair, Germany 

Manuel Luis Capelas, Portugal 

Marilène Filbet, France 

Pam Firth, UK 

Isabel Galriça Neto, Portugal 

Phil Larkin, Ireland 

Daniela Mosoiu, Romania 

Maria Nabal, Spain 

Friedemann Nauck, Germany 

David Oliver, UK 

Sheila Payne, UK 

Per Sjogren, Denmark 

Jenny Van der Steen, The Netherlands 

Farina Hodiamont, Scientific 

Coordinator, Germany 

ORGANISING COMMITTEE 

Isabel Galriça Neto, Chair, Portugal 

Heidi Blumhuber, Italy 

Manuel Luis Capelas, Portugal 

Paula Carneiro, Portugal 

Edna Goncalves, Portugal 

Lourenco Marques, Portugal 

Christina Pinto, Portugal 

Carla Reigada, Portugal 

Helena Salazar, Portugal 

Paula Sapeta, Portugal 

Catarina Simoes, Portugal 

Miguel Tavares, Portugal 

EAPC HEAD OFFICE 

Heidi Blumhuber, Executive Officer 

Amelia Giordano, Deputy Officer 

ADVISORY BOARD AND REVIEWERS 

Claudia Bausewein, UK 

Eduardo Bruera, USA 

Carlos Centeno, Spain 

Nathan Cherny, Israel 

Harvey Chochinov, Canada 

Massimo Costantini, Italy 

Franco De Conno, Italy 

Luc Deliens, Belgium 

Julia Downing, Uganda 

Jorge Hugo Eisenchlas, Argentina 

Kathleen Foley, USA 

Paul Glare, USA 

Richard Harding, UK 

Katharina Heimerl, Austria 

Stein Kaasa, Norway 

Wojciech Leppert, Poland 

Stephan Lorenzl, Germany 

José Martin Moreno, Spain 

Scott Murray, UK 

Faith Mwangi Powell, Uganda 

David Oliviere, UK 

José Pereira, Canada 

Josep Porta-Sales, Spain 

Russel K Portenoy, USA 

Julia Riley, UK 

Karen Ryan, Ireland 

Rainer Sabatowski, Germany 

Willem Scholten, The Netherlands 

Paddy Stone, UK 

Corry Van Tol-Verhagen, The 

Netherlands 

Raymond Voltz, Germany 

Elena Vvedenskaya, Russia 

Boris Zernikow, Germany 

Amy Abernethy, USA 

Janice Ablett, UK 

Julia Addington-Hall, UK 

Zambelli Agostino, Italy 

Bernd Alt-Epping, Germany 

Bertil Axelsson, Sweden 

Vicky Baracos, Canada 

Johann Baumgartner, Austria 

Inger Benkel, Sweden 

Mike Bennett, UK 

Michaela Berkowitz, Israel 

Gian Domenico Borasio, Switzerland 

Bert Broeckaert, Belgium 

Cinzia Brunelli, Italy 

Benoit Burucoa, France 

Mary V Callaway, USA 

Augusto Caraceni, Italy 

David Clark, UK 

Robin Cohen, Canada 

Nessa Coyle, USA 

David Currow, Australia 

Ola Dale, Norway 

Derek Doyle, UK 

Joanne Droney, UK 

John Ellershaw, UK 

Gail Ewing, UK 

Steffen Eychmueller, Switzerland 

Marie Fallon, UK 

Konrad Fassbender, Canada 

Frank Ferris, USA 

Ilora Finlay, UK 

António Manuel Fonseca, Portugal 

Karen Forbes, UK 

Katherine Froggatt, UK 

Carl Johan Fürst, Sweden 

Giovanni Gambassi, Italy 

Cynthia Goh, Singapore 

Gunn Grande, UK 

Mogens Groenvold, Denmark 

Dagny Faksvåg Haugen, Norway 

Katalin Hegedus, Hungary 

Irene J Higginson, UK 

Marianne Hjermstad, Norway 

Jo Hockley, UK 

Peter Hudson, Australia 

Bridget Johnston, UK 

Martina Kern, Germany 

David Kissane, USA 

Pal Klepstad, Norway 

Peter Lawlor, Ireland 

Rudolf Likar, Austria 

Mari Lloyd-Williams, UK 

Jon Håvard Loge, Norway 

Urska Lunder, Slovenia 

Staffan Lundström, Sweden 

Marco Maltoni, Italy 

Lars Johan Materstvedt, Norway 

Sebastiano Mercadante, Italy 

Kyriaki Mistakidou, Greece 

R Sean Morrison, USA 

H Christof Mueller-Busch, Germany 

Irene Murphy, Ireland 

Katalin Muszbek, Hungary 

Andrei Novik, Russia 

Tony O’Brien, Ireland 

Margaret O’Connor, Australia 

Christoph Ostgathe, Germany 

Lise Pedersen, Denmark 

Carlo Peruselli, Italy 

Martina Pestinger, Germany 

Sabine Pleschberger, Austria 

Françoise Porchet, Switzerland 

David Praill, UK 

André Rhebergen, The Netherlands 

Gustavo Francisco Rodio, Argentina 

Walter Rombouts, Belgium 

Esther Schmidlin, Switzerland 

Jane Seymour, UK 

Florian Strasser, Germany 

Imke Strohscheer, Germany 

Nigel Sykes, UK 

Keri Thomas, UK 

Carol Tishelman, Sweden 

Albert Tuca I Rodriguez, Spain 

Bart Van den Eynden, Belgium 

Kris Vissers, The Netherlands 

Declan Walsh, USA 

Catherine Walshe, UK 

Herbert Watzke, Austria 

Roberto Wenk, Argentina 

Chantal Wood, France 

Zbigniew Zylicz, UK 


Contents 

Contents 

Foreword 4 

Lukas Radbruch 

Committees 6 

Plenary sessions 9 

Parallel sessions 23 

Palliative Care in Intellectual Disability 24 

Teaching Methods – Innovation in Education 24 

Reaching Out Towards Africa 25 

Patients’ Priorities and Preferences 26 

Palliative Care in the Community 26 

Leadership – Examples 27 

Palliative Care for Hard-to-Reach Populations: Refugees, Asylum Seekers and the 

Homeless and the Influence of Poverty 27 

Developing Guidelines – A Session on EU Projects 28 

Challenges in Paediatric Palliative Care 29 

Family as Caregivers 29 

Reaching Out Towards Dementia 30 

Old Challenges of Palliative Care Research – Any New Solutions? 30 

Paediatric Palliative Care: Different Models 31 

Palliative Care as a Human Rights Issue 32 

Round Table: The EAPC Recommendations on Opioids in Cancer Pain 32 

Reaching Out Towards Latin America 33 

Breathlessness 33 

Reaching Out Towards Oncology 34 

Suffering and Spiritual Care 34 

Presentation of Highlights of EU Projects 35 

How to Involve the Health Authorities and the Politicians? 37 

Nausea and Vomiting 38 

Reaching Out Towards Psycho-Oncology 38 

Opioid Receptors 39 

Identifying Outcome Indicators 40 

How Should Palliative Care Deal with Patients Requesting PAS or Euthanasia? 41 

Core Competencies – What Has to be Taught? 41 


Continued overleaf 

7

Contents 

Meet the expert 43 

Palliative Care in Long-Term Care Settings for Older People 44 

How to Create a Palliative Care Programme? 44 

Measures for Improved Access to Opioid Medication in Europe 44 

How to Get Informed About Palliative Care: Needs Assessment in Central and 

Eastern Europe 44 

Supporting Family Carers 44 

Palliative Care in COPD and Heart Failure 45 

Physiotherapy in Palliative Care 

The Development of Guidelines and a Core Curriculum for the Palliative Care for 

45 

People with Neurological Disease 45 

Evidence-Based Treatment of Cachexia 45 

The Art and Science of Social Work 45 

Spiritual Care in Palliative Care 45 

What Can a Psychologist Do for Your Team? 46 

Free communication sessions 47 

Assessment and Measurement Tools 48 

Psychology and Communication 49 

End of Life Care II 50 

Ethics II 51 

Research Methodology 52 

Pain 53 

Family and Caregivers 55 

Symptom Management 56 

Ethics I 57 

End of Life Care I 58 

Life Span 59 

Bereavement 61 

Policy 62 

Organisation of Services 63 

Poster discussion sessions 65 

Poster sessions (Thursday) 71 

Poster sessions (Friday) 165 

Index 259 


Plenary sessions 



9 

Plenary sessions



PL 1.1 

When Cicely Saunders opened St Christopher’s 

Hospice in 1967, it brought together, for the first time, a 

large number of patients suffering with terminal illness 

with staff who were committed to discover and then 

teach the best ways of caring for them. Having been a 

medical student, contemporary with Cicely Saunders, 

she asked me to join her on the staff of St Christopher’s 

soon after its opening. We entered a new branch of 

medicine where there were no books or conferences 

and where symptom control was contained on a single 

sheet given to staff entitled ‘Drugs most commonly 

used at St Christopher’s Hospice’. Curiosity and the 

frequent use of the question ‘Why?’ characterised 

those early days and led to carefully monitored clinical 

practice supported by rigorous research carried out by 

Robert Twycross and others. These motives and 

methods remain relevant today. 

From the outset, the importance of psychosocial and 

spiritual needs was recognised and emphasised in the 

inspired concept of ‘Total Pain’, which was described 

as having physical, emotional, social and spiritual 

components. This presentation will summarise some of 

the research in this field conducted in the early days 

and the beginning of the bereavement service. For all 

the advances, it is vital not to forget the words of Cicely 

Saunders: ‘I have tried to sum up the demands of this 

work we are planning in the words “Watch with me”. 

Our most important foundation is the hope that in 

watching we should learn not only how to free patients 

from pain and distress, how to understand them and 


From pioneering days to 

implementation – lessons to be learnt 

Baines M.J. 

St Christopher’s Hospice, London, UK 


never let them down, but also how to be silent, how to 

listen and how just to be there’. 1 

By 1969, the needs of patients at home had become 

more apparent, and the first home care service was 

started following lengthy consultations with those 

already working in the community. These led us to 

offer, from the start, a 24-hour service. At night, the 

nurses, with medical back-up, gave advice by phone, 

but they were willing to visit if necessary. It has been 

fascinating to see the varied ways of working that 

domiciliary palliative care teams have adopted as they 

adjust to different demands and resources in diverse 

countries. 

There is no doubt that Cicely Saunders did not found 

the hospice purely to care for patients in south 

London. Her aim was to change the world’s view of 

dying and this aim was shared with those of us who 

worked with her. So, from the beginning, we welcomed 

visitors from the UK and abroad. They came to see 

what we did and returned home to seek to apply it in 

their own circumstances. The results have been 

phenomenal, with over 8,000 services in 115 

countries. However, there are many patient groups 

who, even now, have little help at the end of life. There 

are 119 countries with no palliative care provision. So 

the need for ‘Reaching Out’ is as relevant today as 

when we started 44 years ago ■ 

Reference 

1. Saunders C. Watch with me. Nursing Times 1965; 61: 1615–1617. 

11 

Plenary sessions



PL 1.2 

The art of letting die 

Jox R.J. 

University of Munich, Institute for Ethics, History and Theory of Medicine; Interdisciplinary 

Centre for Palliative Medicine, Muenchen, Germany 

Modern medicine has enabled us to enhance and 

extend lives, but it has also forced us to make difficult 

decisions about the time and circumstances of dying. 

Palliative care is grounded in the observation that by 

accepting impending death, we can liberate and 

redirect our endeavours towards improving patients’ 

quality of life and promoting a peaceful death. The 

decision-making process associated with this shift 

‘from cure to care’ is deserving of more scientific 

investigation. 

This presentation will summarise some recent studies 

on this topic by the author and colleagues. The starting 

point for these was a study that showed a significant 

discrepancy between the high prevalence of ‘lettingdie’ 

decisions being made in the intensive care unit, 

and the low levels of certitude, quality and standards 

involved in the process of making those decisions. A 

review of palliative care consultations revealed that 

decisions to stop life support were mostly based on 

futility. However, treatment is often continued, despite 

being considered futile, as interviews with nurses and 

physicians have shown. Reasons for this include 

misunderstanding of the law, insufficient 

communication skills and a lack of procedural 

standards. Many clinicians are still sceptical of advance 

directives, although (as was demonstrated in another 

study) terminally ill patients place rather more emphasis 

than others on the idea that their prospective wishes 

should be honoured. This is true not only of adults, but 

also of adolescents and children, who increasingly use 

advance directives. New laws in various European 

countries – among them England and Germany – have 

strengthened patients’ autonomy to direct decisionmaking 

at the end of life. But despite the law, legal 

surrogates consider many factors other than the 

patient’s wishes, and there are huge and hitherto 

unreported differences between family members and 

professional guardians. 

The main problem, however, is communication 

between surrogates and clinicians. To improve this, we 

developed a hospital guideline on finding and 

discussing the goal of treatment at the end of life ■ 


PL 2.1 

When we consider the concept of palliative care, end- 

of-life care and care of the dying, both practice and 

research demonstrate that large proportions of society 

do not know what we are talking about. 

As an example, we present an survey carried out in 

Portugal in 2009, in which more than 50% of the 

population either did not know what palliative care was, 

or understood its definition incorrectly. As professionals, 

we must take heed of the interpretations that the 

society in which we live has of our area of work; 

otherwise that ignorance, combined with the reality of 

‘death-phobia’, will inhibit access to good palliative 

care. 

Considering this, along with the fact that no one will 

ask for that which they do not know exists, we decided 

to develop a plan to promote and clarify the real 

meaning of the expression ‘palliative care’. Based on 

marketing rules – including the idea that we must know 

our target population and its needs very well, and that 

we should understand our core messages and 

recognise the opportunities to spread them – we 

developed several public actions. 


Care of the dying is a task for society 

Neto I.G. 

Hospital da Luz, PC Unit, Amadora, Portugal 


During this conference we will show and comment 

upon some of those opportunities and actions, from 

award-winning television reports with patients, a CD 

with special music and the presence of our First Lady 

at one palliative care team meeting, to the launch of a 

Palliative Care Month (October) campaign and a ‘book 

written from within’, with true stories from patients, 

family members, volunteers and professionals. 

The opportunity created by my election as a member 

of the Portuguese parliament has facilitated public 

discussion and debate around living wills and 

euthanasia. With more attention from the media, it has 

become easier for palliative care messages to be 

listened to and understood. 

Finally, we will analyse the possibility and impact of new 

communication challenges in this area. Understanding 

that ‘lay’ knowledge of palliative care is very limited is, in 

our opinion, a crucial factor to increasing awareness of 

end-of-life issues. Besides providing health assistance 

and teaching, healthcare professionals must work 

hand-in-hand with marketing and communication 

experts to improve care of the dying ■ 

13 

Plenary sessions



PL 2.3 

Pain management: new developments 

Bennett M.I. 

Lancaster University, International Observatory on End of Life Care, Lancaster, UK 

This lecture will examine important and new developments for pain management in palliative care ■ 


PL 3.1 

The philosophy of palliative care 

Kearney M. 

Santa Barbara Cottage Hospital, Cottage Health System, Santa Barbara, USA 

In 1992, the presenter of this session published a 

paper entitled Palliative medicine – just another 

specialty? In this, he voiced the concern that ‘we in 

[palliative medicine] may be in the process of selling our 

soul to the very medical model whose excesses have 

created the needs our specialty sets out to meet’. 1 In 

this session, we will explore the question of whether 

the way palliative care has evolved in the past 18 years 

has justified such a concern. We will do this by 



reflecting on some of the key philosophical concepts 

that have influenced the development of this specialty, 

and by sharing the presenter’s own experiences of 

working with some of the pioneers of hospice and 

palliative medicine on both sides of the Atlantic over 

the past 30 years ■ 

Reference 

1. Kearney M. Palliative medicine – just another specialty? Palliat Med 1992; 6: 

39–46. 

15 

Plenary sessions



PL 3.2 – EAPC News 

Budapest Commitments 

Fürst C.J. 

Stockholms Sjukhem Foundation, Stockholm, Sweden 

The Budapest Commitments framework for palliative 

care development was launched at the EAPC 

Budapest Congress in June 2007. A collaboration 

between the EAPC, the International Association for 

Hospice and Palliative Care (IAHPC) and the World 

Palliative Care Alliance (WPCA), the aim was to 

encourage national associations to commit to 

achievable and measurable goals for the regional and 

national development of palliative care. Commitments 

were made by palliative care associations in 21 

European countries, covering a wide range of topics, 

including education, research, networking, public 

awareness, policy, quality, volunteers and standards for 

palliative care services. The Commitments – including 

goals and methods for reaching them – are published 

on the EAPC website. This plenary talk will present the 

last five years of development of palliative care in 

Europe, as reflected in the Commitments ■ 


PL 3.3 

Both empirical experience and scientific research 

indicate that spirituality and religious faith are not one 

and the same; further, religion could be seen as a ritual 

formalisation of spiritual experience. Towards the end 

of life, religious people usually receive spiritual care 

from their faith leaders and communities. However, 

Poland’s experience shows that there is a growing 

number of people who do not feel connected to the 

faith community that they formally belong to. One 

should be aware of their spiritual needs, as well as of 

those of non-believers. Moreover, there are increasing 

numbers of patients from diverse religious 

backgrounds. This presents a challenge, but also an 

opportunity – to widen the perspectives of proper 

spiritual and religious care in hospice and palliative 


In Poland, the meeting of religious and spiritual needs 

in healthcare is a task traditionally reserved for ordained 

priests. Nevertheless, the hospice movement 

advocates for spiritual needs of patients to be identified 

and addressed by all members of the care-providing 

team. In fact, families, friends and volunteers could play 

an equally important role in this area of patient care. In 

countries with a strong religious majority – like Poland, 

where 89.8% of the population identify as Roman 

Catholic – the need for options in spiritual care is 

crucial, to support people who move away from 

regular religious practice, who feel increasingly distant 

from their faith community, or who simply have no 

religious beliefs. The postgraduate training covering 

religious and spiritual care in healthcare, designed for 


Spiritual and religious care at the end 

of life in Poland’s changing society 

Krakowiak P., 1,2 Binnebesel J., 1,3 Krzyzanowski D. 1,4 

1Fundacja Lubie Pomagac, Gdansk, Poland 

2Uniwersytet Papieski Jana Pawla II, Social Sciences, Krakow, Poland 

3Wsezies, Department of Pedagogy, Lodz, Poland 

4Akademia Medyczna we Wrocławiu, Katedra Zdrowia Publicznego WNOZ, 

Wroclaw, Poland 


ordained and non-ordained men and women alike, is 

due to begin later this year. The book Dolentium 

Hominum. Ordained and lay Christians in front of 

human suffering serves as an introduction to this 

project. 

Commitment to shared goals in hospice care and 

educational projects has united Catholics, Protestants 

and those of the Orthodox faith; they have jointly 

issued a handbook on end-of-life care for home care 

patients entitled Home care for seriously ill patients. 

One part of this book is devoted to the spiritual and 

religious needs of patients. It is based on practical 

experience and written in an accessible way, with the 

intention of involving parishes and other faith 

communities so that they might join in the careproviding 

process. This goal could be attained through 

co-operative work between home care teams and 

priests, pastors, social workers and volunteers. The 

handbook will be distributed in parishes and faith 

communities, where special training for volunteers will 

also be available. 

An educational programme on end-of-life care was 

launched in schools in 2009. This is a joint initiative 

from the Polish Hospice Foundation, more than 100 

hospice and palliative care units nationwide, and more 

than 300 teachers – including many whose specialty is 

religious education. The guide How to talk to pupils 

about the end of life and voluntary work in hospice has 

been recommended by the Polish Ministry of 

Education; it is valued for its solid theoretical 

17 

Plenary sessions



background in paedagogy. Forty lesson scenarios for 

pupils and students at different levels are provided, 

giving practical support to teachers. Spiritual and 

religious aspects of patient care, as well as social 

awareness and voluntary service for the terminally ill, 

are the main concerns of this book. 

All of the above initiatives help to promote 

comprehensive end-of-life patient care, with a special 

emphasis on the spiritual needs of patients and their 

relatives. It is desirable for hospice and palliative care 

experience to be replicated and transferred to other 

areas of healthcare and social work in Poland, 

especially in home care for elderly and long-term 

patients. The involvement of faith communities 

could help remedy the growing demographical 

problem in Poland – one of the fastest-ageing 

countries in Europe. This is the reason why the I 

Like Helping Foundation has been initiated: its 

main objective is to transfer good practices from 

hospice and palliative care to social- and end-of-life 

care in Poland ■ 


PL 4.1 

Palliative care and HIV 

Gwyther L. 

Hospice Palliative Care Association of South Africa; University of Cape Town, 

Family Medicine, Cape Town, South Africa 

Lessons learned from providing palliative care to 

cancer patients have proved invaluable in preparing 

the hospice community to extend care to people living 

with HIV. 

Peter Selwyn, an experienced HIV clinician, comments: 

‘Initially, in the now-distant early years of the AIDS 

epidemic in the developed world, AIDS care was 

palliative care. As HIV/AIDS therapies have evolved 

rapidly since the mid-1990s, the focus of clinical care 

has increasingly been on antiretroviral therapy and the 

complex decision-making that surrounds its use. While 

the growing “medicalisation” of AIDS is in part because 

of the advent of effective treatment with the possibility 

of controlling viral replication and disease progression, 

the emergence of this more biomedical paradigm has 

resulted in a loss of perspective on chronic disease 

and the issues relevant to progressive, incurable illness 

and end-of-life care. Early in the epidemic, HIV care 

providers were by definition palliative care providers. 

Now the challenge is to reacquaint what have since 

developed into two distinct disciplines, in order to 

provide our patients with the benefits of both types of 

expertise’. 1 

Using patient stories, this plenary talk will explore the 

fact that palliative care in HIV demonstrates the 

comprehensive scope of palliative care. It is applicable 

early in the diagnosis, in conjunction with other 

therapies implemented to prolong life; provides relief 

from pain and other distressing symptoms; integrates 

the psychological and spiritual aspects of patient care 


(and addresses many other needs); offers a support 

system to help the family cope during the patient’s 

illness and in their bereavement; enhances patients’ 

quality of life; and positively influences the disease 

trajectory. 2 


HIV funders and clinicians speak the language of 

prevention, treatment, care and support. Palliative care 

offers the full range of these healthcare interventions, 

providing families and communities with HIV 

awareness education, voluntary counselling and testing 

services, and helping to prevent suffering through 

symptom management and emotional support, by 

ensuring access to Highly Active Antiretroviral Therapy 

(HAART) and treatment support for treatment 

adherence, and by providing comprehensive care and 

support based on individual patient needs. 

How do we best support people through the complex 

problems associated with HIV-positive status – such as 

disclosure, treatment adherence, management of 

opportunistic infections and cancers, the emotional 

impact of the illness, and its social and financial 

consequences – to enable people to live positively with 

a good quality of life, where HIV is a chronic illness 

rather than a terminal disease? 

This is the challenge, and the reward, of providing 

palliative care to people with HIV ■ 

References 

1. Selwyn PA. Why should we care about palliative care for AIDS in the era of 

antiretroviral therapy? Sex Transm Infect 2005; 81: 2–3. 

2. www.who.int/cancer/palliative/definition/en/ (last accessed 15 March 2011) 

19 

Plenary sessions



PL 4.3 

Palliative care in Romania – 

between poor resources and 

poor management 

Donea D.O. 

Asociatia pentru Servicii Mobile de Ingrijire Paliativa, Bucharest, Romania 

Palliative care is a young medical subspecialty that 

represents a new ‘mouth to be fed’ in a not-so-wealthy 

family. Limited resources mean that all underfinanced 

medical subsystems find themselves in competition. 

This is usually with regards to funding, but the 

implications go far beyond finances, as medical staff 

begin to look for better-paid jobs in other countries. 

On the other hand, the models of care used in eastern 

European countries are mainly imported from 

developed countries without sufficient adjustment to 

the local environment. The cultural background may 

influence care needs and caregivers’ attitudes; 

however, funding is also necessary to carry out proper 

research into the assessment of specific patients’ 

needs. 

Autonomous small teams may be the primary solution, 

as bureaucratic institutionalisation entails a high 

standardisation of care – one of routine that is very 

hard to implement in an environment with an 

inconsistent supply of resources. For example, in 

Romania, the basic medical package of services 

covered by the National Health Insurance House has 

not been defined, and the Ministry of Health enables 

medical teams to do several basic procedures in home 

care that the national health insurance does not cover. 

In conclusion, to be effective, palliative care in 

Romania should be based around local patients’ 

needs; further, it needs to find a way to adapt to 

limited funding and the instable management of the 

healthcare system ■ 


PL 5.1 

Primary care and palliative care 

Primary care services have great untapped potential for 

delivering palliative care. There are seven main reasons 

why this opportunity exists: 

1. Primary care can deal with people suffering from all 

progressive, life-threatening illnesses – not just a 

specific diagnostic group, such as cancer or heart 

failure. 

2. Primary care can start palliative care for patients as 

soon as it is beneficial, and offer continuity of care up 

to the last days or weeks of life. 

3. Primary care clinicians can identify all dimensions of 

need – physical, psychological, social and spiritual – 

as they already have holistic care as their guiding 

philosophy. 

4. Primary care can help more people be cared for and, 

when they wish, to die in their own homes or in care 

homes. 

5. Primary care plays a great role in supporting family 

carers from diagnosis to bereavement; carers 

frequently receive their own personal care from the 

same team as the patient. 

6. In economically developing countries, where needs 

are greatest, there is huge potential for the integration 

of palliative care into primary care. 

7. Primary care can encourage a discourse about and 

promote community involvement in death and dying. 


Murray S.A. 

University of Edinburgh, Primary Palliative Care Research Group, Edinburgh, UK 


The provision of palliative care in the community 

by generalists, such as GPs and district nurses, 

is now referred to as ‘primary palliative care’. 

The Primary Palliative Research Group at 

Edinburgh University in Scotland has led 

work using various innovative concepts, 

including multidimensional illness trajectories 

and methods such as multiperspective serial 

interviews, to explore and lay out these 

areas for the development of palliative care 

in the community. The International Primary 

Palliative Care Research Group is facilitating 

international collaboration and advocacy. 1 

Palliative care specialists must personally 

care for patients with complex needs. 

However, the WHO affirms that the most 

strategic role of palliative care specialists in 

all disciplines is to train and support generalists 

in the community – and, indeed, in hospitals. 

Then nurses, doctors, therapists and social 

workers can provide reliable and equitable 

holistic care to all people in the community, 

according to need – not diagnosis or setting ■ 

Reference 

1. www.uq.edu.au/primarypallcare (last accessed 16 March 2011) 

21 

Plenary sessions



PL 5.3 

Palliative care in Europe: the view 

from outside in 

De Lima L. 

International Association for Hospice and Palliative Care (IAHPC), Houston, USA 

The hospice concept was developed in the UK in the 

1970s. Since then, palliative care in Europe has 

continuously developed and grown throughout the 

region. It is now, as stated in the EAPC Atlas of 

Palliative Care in Europe, ‘a unified community that 

strengthens economic co-operation, political harmony 

and cultural exchange’. 1 

This expertise demonstrated across Europe has 

become increasingly valuable to individuals, 

governments and policy-makers from countries in 

other regions of the world, helping to shape their 

efforts to advance palliative care in their own settings. 

The purpose of this plenary is to present the view of a 

non-European on the state of palliative care 

development in Europe. 

The main objectives of this presentation are to: 

1. Provide information on the status of palliative care 

education, policies, opioid availability and service 

provision in Europe, and compare them with the rest 

of the world 

2. Identify success stories from European countries, 

and ways in which they may be implemented in 

other areas of the world 

3. Present the challenges that European countries face 

and possible strategies for overcoming them 

4. Explore the ways in which international organisations 

may collaborate with national associations and the 

EAPC. 

After this presentation, participants will have a better 

understanding as to how Europe compares to other 

areas of the world in terms of palliative care provision, 

and of the ways in which mutual collaboration may 

prove beneficial for the global development of 

palliative care ■ 

Reference 

1. Centeno C, Clark D, Lynch T et al. EAPC Atlas of Palliative Care in Europe. 

Houston, TX: IAHPC Press, 2007. 


Parallel sessions 

Palliative Care in Intellectual Disability 24 

Teaching Methods – Innovation in Education 24 

Reaching Out Towards Africa 25 

Patients’ Priorities and Preferences 26 

Palliative Care in the Community 26 

Leadership – Examples 27 

Palliative Care for Hard-to-Reach Populations: Refugees, Asylum Seekers and the 

Homeless and the Influence of Poverty 27 

Developing Guidelines – A Session on EU Projects 28 

Challenges in Paediatric Palliative Care 29 

Family as Caregivers 29 

Reaching Out Towards Dementia 30 

Old Challenges of Palliative Care Research – Any New Solutions? 30 

Paediatric Palliative Care: Different Models 31 

Palliative Care as a Human Rights Issue 32 

Round Table: The EAPC Recommendations on Opioids in Cancer Pain 32 

Reaching Out Towards Latin America 33 

Breathlessness 33 

Reaching Out Towards Oncology 34 

Suffering and Spiritual Care 34 

Presentation of Highlights of EU Projects 35 

How to Involve the Health Authorities and the Politicians? 37 

Nausea and Vomiting 38 

Reaching Out Towards Psycho-Oncology 38 

Opioid Receptors 39 

Identifying Outcome Indicators 40 

How Should Palliative Care Deal with Patients Requesting PAS or Euthanasia? 41 

Core Competencies – What Has to be Taught? 41 



23 

Parallel sessions



Palliative Care in 

Intellectual Disability 

Abstract number: PS1.1 

Abstract type: Parallel Symposium 

A New Model for Breaking Bad News to People 

with Intellectual Disabilities 

Tuffrey-Wijne I. 1 

1 St George’s University of London, Division of 

Population Health Sciences & Education, London, 

United Kingdom 

Background: Existing models for breaking bad news 

to patient who have a life-limiting illness are 

inadequate in meeting the needs of people with 

intellectual disabilities (ID). A number of assumptions 

underlying these models do not hold for patients with 

ID; for example, the notion that breaking bad news 

involves two main parties (the bearer and the 

recipient of the bad news), or that bad news is focused 

on one central piece of information. 

Methods: We conducted focus groups and interviews 

with 96 stakeholders (including people with ID, 

family carers, cancer/palliative care professionals and 

ID staff) to elicit their experiences of bad news 

situations for people with ID. Findings were 

integrated with evidence from our previous studies, 

the literature and theoretical constructs. A draft 

model for breaking bad news to people with ID was 

fed back to participants and other stakeholders for 

detailed feedback, before the model was finalised. 

Results: The new model for breaking bad news to 

people with ID will be presented. It is based on the 

finding that bad news situations are usually complex 

and are made up of lots of different chunks (or pieces) 

of knowledge and information. Important questions 

to ask include: (a) What parts of the bad news does 

this person understand already? (b) How much more 

can (and should) he/she be helped to understand? (c) 

What is the best way, place and time to give this 

person the best chance of understanding the 

information? (d) What does this person need in order 

to communicate in the best way? (e) Who can best 

help this person to understand? 

The model has 4 components: 

1. Building a foundation of knowledge and 

understanding is central to the model. Gradually 

and over time, the person with ID builds his/her 

knowledge and understanding of the way his/her 

situation is changing because of the bad news. The 

people around him/her help with this, by giving 

small, singular chunks of information that make 

sense to the person. This does not have to done by 

talking: much of the information will be understood 

through experiencing change. 

The other 3 components must be considered 

throughout: 

2. Capacity and understanding are important. 

We must know and understand how the law on 

mental capacity (which will vary between countries) 

applies to the person’s situation. Some people may 

not be able to understand certain aspects (chunks) of 

the information. If this is the case, it does not make 

sense to give it; rather, we should stick to the 

information the person can understand. In order to 

give someone the best chance of understanding, we 

must consider what and who he/she needs to enable 

the best possible communication. 

3. The people involved include everyone with a 

significant involvement in the life of the person with 

learning disabilities: families, close carers, paid care 

staff, health and social care professionals. They may 

all have an important role to play in helping the 

person understand and cope with the bad news. 

4. The support needed, not only by the person 

with ID, but also by the people involved. Some of 

these will be affected by the bad news themselves. 

They are needed to help the person with ID to 

understand and cope with the news, but in order to 

do so, they themselves will need help and support. 

This could be information, emotional support, social 

support and/or spiritual support. 

Conclusion: This model now needs testing in reallife 

situations. In future, this may include testing of 

the model’s applicability to the general population, 

and not just people with ID. Feedback and comments 

from delegates during and after this presentation will 

be warmly welcomed. 



Palliative and End-of-Life Care for People 

with Intellectual Disabilities: Partnership and 

Collaborative Working 

McLaughlin D. 1 , Barr O. 2 , McIlfatrick S. 2 , McConkey R. 2 

1 University of Ulster, Institute of Nursing Research, 

School of Nursing, Belfast, United Kingdom, 

2 University of Ulster, Institute of Nursing Research, 

School of Nursing, Newtownabbey, Belfast, United 

Kingdom 

Background: The literature suggests that better 

collaboration between services is essential to enable 

quality palliative and end-of-life care for people with 

intellectual disabilities and to ensure that this 

population are not dying disadvantaged deaths (1,2). 

A lack of referral of people with intellectual disabilities 

to palliative care services suggests that this 

collaboration is limited. 

Aim: The aim of this study is to develop and evaluate 

an educational resource for specialist palliative care 

and intellectual disability services which promotes 

collaborative working. 

Methods: This is a doctoral sequential, mixed 

methods research study involving three integrated 

phases. The study is underpinned by a transformative 

paradigm and is also being informed by and 

informing a conceptual model on partnership 

working(3). Phase 1 involved semi-structured 

interviews with health and social care professionals 

(n=30) and with family carers (n=5). This aimed to 

establish the educational needs of professionals and 

the issues and challenges associated with partnership 

working between services and with family carers. Two 

focus groups also took place with a total of seventeen 

people with intellectual disabilities to provide a 

further user perspective to the study. Findings of 

Phase 1 informed Phase 2- a regional scoping study of 

palliative and end-of-life care service provision to 

people with intellectual disability with a focus on 

partnership and the National Gold Standard 

Framework for End-of-Life Care. Findings of Phase 1 

and Phase 2 informed Phase 3 which involved the 

development of an educational resource (DVD and 

Manual) currently being formatively evaluated by a 

purposive sample of health and social care 

professionals (n=12). Findings of interviews were 

analysed thematically using a recognised framework. 

SPSS was used to analyse quantitative data which 

yielded descriptive statistics. 

Findings: Issues and challenges in the delivery of 

palliative care to this population were identified. 

Some of these were that end-of-life care for people 

with intellectual disabilities was unco-ordinated, 

lacked continuity, was not equitable and that there 

was a large range of unmet learning needs within 

health and social care professionals in both 

intellectual disability and palliative care services. 

Findings suggest that collaboration across services can 

address some of these issues, but this partnership 

working tends to be patchy. The study also identified 

enablers, benefits and barriers to partnership working. 

A framework for partnership working between 

services and service users has now been developed. 

Conclusions: The findings of this study have 

implications for practice, policy and education. This 

study adds to the developing knowledge base for endof-life 

care for people with intellectual disabilities. 

References: 

1.Todd, S (2006) A troubled past and present- a history of death and 

disability. In: Read, S (ed) Palliative care for people with learning 

disabilities (pp:13-25) London: Quay Books 

2.Michael, J (2008) Healthcare for all: Report of the independent 

inquiry into access to healthcare for people with learning disabilities. 

London: NHS 

3.Boydell, L., Rugkasa, J., Hogett, P and Cummins, A (2007) 

Partnerships: The benefits. Dublin: Institute of Public Health in 

Ireland 



Shared Decision Making in End-of-Life Care 

for People with Intellectual Disabilities? 

Wagemans A. 1,2,3 , van Schrojenstein Lantman-de Valk H. 4 , 

Proot I. 2 , Metsemakers J. 2,3,5 , Tuffrey-Wijne I. 2,6 , Curfs 

L. 2,3,7 

1 Maasveld, Koraalgroep, Maastricht, Netherlands, 

2 Governor Kremers Centre, Maastricht University and 

Academic Hospital, Maastricht, Netherlands, 

3 CAPHRI (School of Primary Care and Public Health), 

Maastricht University Medical Centre, Maastricht, 

Netherlands, 4 Department of Primary and 

Community Care, Radboud University Nijmegen 

Medical Centre, Nijmegen, Netherlands, 5 Department 

of General Practice Maastricht University Medical 

Centre, Maastricht, Netherlands, 6 Division of 

Population Health Sciences and Education, St 

George’s University of London, London, United 

Kingdom, 7 Department of Clinical Genetics, 

Maastricht University Medical Centre, Maastricht, 

Netherlands 

Background: The aim of this study was to 

investigate the process of decision-making in end-oflife 

decisions regarding people with intellectual 

disabilities, from the perspective of doctors, legal 

representatives and professional caregivers. 

Design and methods: This qualitative study 

involved semi-structured interviews with doctors, 

legal representatives and professional caregivers after 

the deaths of ten patients with intellectual disabilities 

who lacked capacity. The interviews were transcribed 

verbatim and analyzed using grounded theory 

procedures. 

Results: Doctors shared the end-of-life decisions with 

legal representatives and professional caregivers. 

People with intellectual disabilities themselves were 

not involved in the decision-making process. Relatives 

and professional care providers both contributed to 

the decisions, although doctors felt they were 

ultimately responsible. Legal representatives had clear 

ideas about the direction of decision making, although 

they did not find it easy and wanted the doctors to 

support them in the decision making process. Doctors 

were supported in their decision-making tasks by 

satisfactory professional relationships with relatives 

and professional care providers, with whom they 

sought consensus. Representatives did not seek 

consensus with doctors but merely wanted doctors to 

support them in the decision making tasks. Doctors 

seemed to base end-of-life decisions on health issues 

and gave patients’ representatives the opportunity to 

evaluate the quality of life of their loved ones. Both 

doctors and representatives felt responsible for the 

end-of-life decisions. 

Conclusion: In the process of decision-making, 

doctors would have to evaluate the subjective 

interests of their incompetent patients as part of their 

professional standards. Doctors should be trained to 

describe more explicitly the reasons for their medical 

decisions and should train themselves in discussing 

ethical issues. Shared decision-making and striving for 

consensus require trained professionals and a clear 

decision-support instrument. People with intellectual 

disabilities should be supported and trained to 

participate in end-of-life decisions taking their 

capacity and possibilities into account. 

Teaching Methods – Innovation 

in Education 



Multicultural Education and Workforce 

Development for Palliative Care in the Asia 

Pacific Region 

Hegarty M. 1 , Breaden K. 2 , Legg M. 1 , Devery K. 1 , Goh C. 3 , 

Shaw R. 4 , Agar M. 1 , Swetenham K. 1 , Currow D. 1 

1 Flinders University, Palliative and Supportive 

Services, Adelaide, Australia, 2 Flinders University, 

Palliative and Supportive Services, Adalaide, Australia, 

3 National Cancer Centre, Department of Palliative 

Medicine, Singapore, Singapore, 4 Asia Pacific Hospice 

Network, Singapore, Singapore 

The development of palliative care practice 

throughout the world requires well trained local 

health care professionals. However, in many areas, 

including the resource-challenged Asia Pacific region, 

access to postgraduate education and clinical training 

programmes is limited. To address this, a creative 

partnership began between Flinders University, 

Adelaide, Australia, the Singapore National Cancer 

Centre and the Asia Pacific Hospice Network (APHN) 

to provide postgraduate education and palliative care 

clinical experience for clinicians from the region. 

Over 90 students from several countries have 

attended the Graduate Certificate in Health: Palliative 

Care course in Singapore over the past five years. The 

strengths of the programme include its strong 

evidenced-based framework, its multidisciplinary 

inclusiveness and its innovative and interactive 

teaching style. The main teaching challenge for the 

teaching team is to deliver culturally appropriate 

curricula to students from diverse cultural, resource 

and linguistic backgrounds. This postgraduate 

programme is an important initiative for the region 

and several graduates now lead palliative care services 

in their respective communities. 




Education and Research Evolution in France 

in the Field of Palliative Medicine 

Viallard M.-L. 1 

1 Necker Enfants Malades, Paediatric and Adult 

Palliative Medicine Team, Paris, France 

The evolution of medicine and its practices generates 

rare and often new complex situations. The taking 

into account of any suffering became a social and 

medical requirement. Death, handicap, disease, large 

oldness are questions always difficult to approach 

socially and are taboos. 

French wants have a humanistic medicine with 

solidarity. It is necessary to train doctors and health 

professionals ready to ensure human and professional 

approaches which consider that death is a natural 

phenomenon. Palliative medicine becomes fond of a 

life and care plan adapted for each patient. It must be 

concerned with chronic or degenerative pathologies 

(polyhandicap…). 

University course: Without giving up the 

opportunities given by modern technical and 

scientific medicine, it was decided to create a 

university course of palliative medicine. Medicine is 

often traditionalist and/or submissive to pure 

“scientific” criteria. 

Formations: During the initial medical training a 

specific teaching in palliative medicine is now on 

obligatory in each university. During medical 

specialization a palliative medicine complementary 

specialization diploma was created. It is accessible to 

all the medical disciplines. The duration is 2 years 

with 4 six-month periods of training courses in 

palliative care units. During this postgraduate, each 

student is trained to research in collaboration 

between medicine and human, social, law sciences. A 

palliative medicine MASTER DEGREES should allow 

paramedics, psychologists and doctors to profit from a 

common formation. Expected objectives are to bring 

together living strength of the teachers, to develop 

specialized expert testimonies and collaboration with 

the palliative medicine. That will facilitate the 

disappearance of very strong fears of “substitution” in 

the medical community and care givers. It is also a 

question of ensuring qualified professionals relieving 

in palliative approach and accompaniment. The 

concern first is to privilege the transmission of 

appraisable competences. 

Research: Research is necessary for ensured of 

widened professional competences. Human 

Competences (relation with the other and “the 

others”, capacity of presence) reflexive, 

organizational, methodological competences may be 

developed. The objective is to identify and regroup 

the wills and the competences thus formed in 

particular with training courses in various countries. 

Projects of training seminars in scientific 

international writing, multidisciplinary 

methodologies, development and evaluation of a 

research project are needed. Currently works are in 

hand. on subjects like spinal muscular amyotrophy 

type 1, accompaniment, life and care plan in 

neonatology, neuromuscular diseases in adult, ethical 

problems and decision makings complex. 

Publications in English and French are encouraged. 

The French-speaking review will postulate with its 

Medline indexing (for medicine). It is already indexed 

in the bases Scopus and Embase for the social sciences. 

The international exchanges are stimulated. The 

research projects will be carried out with other 

medical and nonmedical disciplines on specific 

competences to palliative medicine. Multicenter 

works will be encouraged. One of the objectives is to 

recognize young people to encourage them to carry 

out a work of doctoral thesis in palliative medicine 

but also in science. The experiment abroad by 

exchanges of international students will be facilitated. 

Thus, we will be able to widen the research capacity 

with sharing projects, energies and competences, 

publishing the validated results and proposing 

methodologies which will be subjected to discussion 

by the publication. 

Conclusion: The dynamics which is set up meets 

clearly definite and appraisable aims. It allows the 

assertion of a competence which develops and is 

shared. We pass from a built knowledge built to the 

construction of knowledge. 



Sharing the Wealth: Providing Responsible 

Training and Technical Assistance in 

Palliative Care in Developing Countries 

Krakauer E.L. 1 

1 Harvard Medical School, Dept of Global Health & 

Social Medicine, Boston, MA, United States 

Traditionally, the mission of medical schools in 

wealthy countries has been to do research and teach. 

Yet the disparities in medical knowledge and 

experience between rich and poor countries make it 

morally imperative for medical schools in rich 

countries to add a third part to their mission: to share 

their wealth of expertise with colleagues in poor 

countries and thereby also to help reduce disparities 

in access to high-quality health care. Expertise in 

palliative care is badly needed in the developing world 

because most people with cancer and other lifethreatening 

illnesses in poor countries do not seek 

medical care until their disease is advanced or 

incurable. Based on experience in Vietnam and other 

developing countries, we propose a set of guidelines 

for providing clinical training and technical assistance 

in palliative care in resource-limited settings. 

1) Training and technical assistance in 

palliative care should respond to local needs. 

Curricula in palliative care written to train clinicians 

in rich countries are of limited use in poor countries. A 

situation analysis to determine the type, extent, and 

severity of palliative care needs is a necessary 

prerequisite to curriculum preparation. Because 

palliative care needs may vary from country to 

country, even curricula written for use in poor 

countries require adaptation for each specific setting. 

2) Training of local trainers is a priority. 

Palliative care training programs can become 

sustainable, and palliative care services can be scaledup 

to meet the need, only when well-trained local 

trainers are available in adequate numbers. 

3) Trainees must be motivated. Care must be 

taken to identify as potential trainees clinicians 

passionate about relieving the unnecessary suffering 

of patients. Care should be taken to avoid spending 

time and money training clinicians who are assigned 

by their bosses to participate in palliative care training 

course but who would rather be elsewhere. 

4) In order for trainees to implement their 

new knowledge of palliative care they 

require: a) National palliative care policies that 

permit and guide implementation of palliative care; 

and b) Essential medications, particularly oral 

morphine. This guideline reflects the WHO public 

health strategy for building national palliative care 

programs. 

5) The curriculum: a) Must be based on 

national palliative care guidelines; b) May 

have some sections - such as pain relief - that 

need not vary from country to country; c) Will 

have other sections - such as ethics of end-oflife 

care, breaking bad news, and beliefs about 

death and dying - that must be rewritten to 

respond and be relevant to local culture(s). 

6) Interactive teaching methods, such as casebased 

learning in small groups, can be 

introduced successfully even where they are 

unfamiliar. 

7) Palliative care training and technical 

assistance must be provided in concert with 

efforts to make prevention, early diagnosis 

and treatment of life-threatening illnesses 

available and accessible. Otherwise, it invites 

characterization as second rate care for the poor. 

8) In general, training and technical assistance 

should continue at least intermittently with 

the same trainers over years if palliative care 

training programs and clinical services are to become 

sustainable. 

9) Palliative care knowledge among trainees 

should be evaluated before training begins, 

just after training is completed, and at least 

once more approximately one year later to 

assess the effectiveness of the training and the 

durability of any improvements in knowledge about 

or attitudes toward palliative care. 

Following this non-exhaustive list of guidelines can 

help assure that palliative care training and technical 

assistance in a developing country responds 

responsibly to local needs and is as effective as 

possible. 



Reaching Out Towards Africa 



Reaching out towards Africa 

Mwangi-Powell F.N. 1 

1 African Palliative Care Association, Management, 

Kampala, Uganda 

Palliative care is an approach that improves the 

quality of life of patients and their families facing the 

problems associated with life-threatening illness, 

through the prevention and relief of suffering by 

means of early identification and impeccable 

assessment and treatment of pain and other 

problems, physical, psychosocial and spiritual.[1] In 

sub-Saharan Africa, the need for palliative care is 

significant. By 2009, an estimated 22.5 million people 

in the region were living with the human 

immunodeficiency virus / acquired immune 

deficiency syndrome (HIV / AIDS), 67 per cent of the 

global disease burden, with 1.8 million new infections 

reported in that year alone.[2] Moreover, there were 

over 700,000 new cancer cases and nearly 600,000 

cancer-related deaths in Africa in 2007,[3] while 

cancer rates on the continent are expected to grow by 

400 per cent over the next 50 years.[4] There is also a 

growing concern that as people’s lifestyle, nutritional 

preferences and non-sedentary work patterns on the 

continent change, Africa may experience an increase 

in the incidence of chronic, life-limiting 

diseases.[5]Despite the need for palliative care to 

address the large disease burden in Africa, current 

provision of palliative care on the continent is 

inconsistent, often coming from isolated centres of 

excellence rather than integrated into mainstream 

health systems. For the overwhelming majority of 

Africans who currently endure progressive, lifelimiting 

illnesses, access to culturally appropriate, 

holistic palliative care (that includes effective pain 

and symptom management) is at best limited, and at 

worst non-existent.[6] More specifically, key 

indicators for palliative care provision (e.g. pain 

management, the development of national policies, 

and integration into the curriculum of health 

professionals and health services) demonstrate 

significant gaps across Africa. For example, despite the 

existing disease burden, in 2008 the vast majority of 

morphine was consumed in industrialised countries, 

while in Africa the regional mean was only 0.33mg 

compared with the global mean of 5.98mg.[7] To 

date, only three African countries have palliative care 

integrated into their national health policies and 

strategies (i.e. Uganda, South Africa and Tanzania), 

while Swaziland, Rwanda and Zambia have developed 

draft policies that are subject to approval by their 

health ministries. Only five countries across Africa 

have palliative care integrated in the curriculum of 

health professionals, of which only two (Uganda and 

South Africa) have recognised palliative care as an 

examinable subject.Consequently, not only is 

palliative care absent from the vast majority of African 

national health policies and basic care packages, but 

its provision is limited primarily to nongovernmental 

organisations, faith- and communitybased 

organisations and dedicated hospices. While 

some of these services are excellent demonstration 

sites for care provision, they cannot begin to reach the 

significant national need for palliative care. These 

challenges are big - but there´s plenty we can do to 

overcome them. We just have to create the right 

opportunities and the right collaborations and 

partnerships to reach out to Africa,[1] World Health 

Organisation (2002) National Cancer Control 

Programmes: Policies and Managerial Guidelines. 

Geneva: World Health Organisation.[2] Joint United 

Nations Programme on HIV/AIDS (2010) Report on 

the Global AIDS Epidemic. Geneva: UNAIDS.[3] 

Garcia M, Jemal A, Ward EM, Center MM, Hao Y, 

Siegel RL, Thun MJ (2007) Global Cancer: Facts and 

figures 2007. Atlanta, GA: American Cancer 

Society.[4] Morris K (2003) Cancer? In Africa? Lancet 

Oncology 4: 5.[5] World Health Organisation (2006) 

The African Regional Health Report: The health of the 

people. Geneva: World Health Organisation.[6] 

Harding R, Higginson IJ (2005) Palliative care in sub- 

Saharan Africa: An appraisal. Lancet, 365: 1971-1977 

25 

Parallel sessions





The Need for Palliative Care in Morocco 

Nejmi M. 1 

1 Centre National des Soins Palliatifs-Douleur, Rabat, 

Morocco 

Morocco (population 32.21 million people) is a 

country in Northern Africa that covers an area of 

446,550 square kilometres. Its boundaries border the 

North Atlantic Ocean and the Mediterranean Sea, 

between Algeriaand Western Sahara. The capital of 

Morocco is Rabat. According to the United Nations 

humandevelopment index (HDI), Morocco is ranked 

125/177 countries worldwide (value0.620)1 and 6/45 

African countries for which an index is available. This 

places Moroccoin the group of countries with 

medium human development. 

PALLIATIVE CARE SERVICE PROVISION 

Current services 

The Moroccan Society of Management of Pain and 

Palliative Care was created within the National 

Institute of Oncology in Rabat in 1995. This 

designated centre provides the only palliative care 

service in Morocco; a 10 bed hospital inpatient unit 

and an outpatient clinic. The majority of patients seen 

at the centre are those with metastatic cancer pain. 

Occasionally the centre attends to those living with 

HIV and suffering from chronic non-cancer pain. Up 

to 35,000 new cases of cancer are registered each year 

in Morocco yet treatment reaches only 10,000 of 

those, leaving many with no treatment and 

significant pain. The organisation manages a biennial 

conference for up to 400 participants to expand 

interest in palliative care. Since April 2003 the need to 

manage pain has been endorsed by health authorities 

as a national priority. The Moroccan Society of 

Management of Pain and Palliative Care in Rabat is 

the first National Centre of Pain 

Opioid availability and consumption 

Morphine consumption is increasing each year and is 

a thousand per cent more important now than 

in1995. Few Moroccan doctors prescribe morphine 

because of barriers of ignorance and fear of side 

effects. But things are changing now, slowly but 

surely. The International Narcotics Control Board has 

published the following figures for the consumption 

of narcotic drugs in Morocco: codeine 519kg; 

morphine 4kg; pholcodine 119kg; 

dextropropoxyphene 943kg; ethylmorphine 16kg. 

For the years 2000-2002, the average defined daily 

dose consumption of morphine for statistical 

purposes (S-DDD) in Morocco was 3. This compares 

with other African countries as follows: Swaziland 1; 

Egypt 2; Uganda 4; Zimbabwe 13; Namibia 73; South 

Africa 103. Twenty nine countries reported no 

morphine consumption during 2000-2002 

Patients’ Priorities and Preferences 



Priorities for Older Patients with Dementia 

van der Steen J.T. 1 

1 VU University Medical Center, EMGO Institute for 

Health and Care Research, Nursing Home Medicine / 

Public and Occupational Health, Amsterdam, 

Netherlands 

Dementia in the last phase of life is increasingly 

common; up to one of three older patients currently 

dies with dementia. Many such patients die in 

institutional settings after a trajectory of functional 

decline and problems such as recurrent infections and 

limited intake. Even though prognostication is 

difficult in this population, patients and families may 

have prolonged palliative care needs. Priorities for 

palliative care practice and for research may be based 

on both preferences and areas where care can be 

improved. Families report poor end-of-life care when 

they perceive staff is not dedicated to fulfil the 

patients’ and families’ needs on a day-to-day basis. 

Preferences of dementia patients regarding a good 

death, according to their families, have shown to be 

similar as perceived by the general public - freedom 

from unpleasant symptoms, and dignity. Many 

dementia patients suffer from pain, shortness of 

breath and other problems that warrant adequate 

treatment in the last phase of life. In some countries, 

disproportionate burdensome life-prolonging 

interventions are commonly used. Even though 

evidence for effectiveness of care and treatment 

specific to dementia is limited, several areas 

consistently appear in need of improvement. 

Obviously, this refers to symptom management 

which includes monitoring with tools specific to 

dementia. Further, this includes but is not limited to 

areas where preferences are more variable and should 

be tailored to the individual, such as advance care 

planning with patients and families, and early 

communication and informing of families. Further, 

continuity of care and training of staff may be 

improved. Underlying these issues with room for 

improvement is the acknowledgment of palliative 

care needs in dementia patients. The EAPC will 

support palliative care development in dementia and 

is currently working on a set of recommendations 

specific to palliative care in dementia. 



Preferences of Older Patients Facing Death – 

Comparison across Four European Countries 

Pleschberger S. 1 

1 University of Klagenfurt, Interdisciplinary Faculty, 

Palliative Care and Organisational Ethics, Vienna, 

Austria 

In the last decade we have been facing a growing 

recognition of the public health challenges associated 

with population ageing, which means that death now 

commonly occurs at the end of a long life. A body of 

work has begun to emerge which explores the 

intersection of dying and ageing. To inform this 

debate it is vital to better understand what older 

people’s particular experiences of end-of-life care are, 

what issues older adults prioritize in end-of-life care 

and to explore their attitudes and beliefs about endof-life 

care issues. 

A central means of accessing older people’s 

perspectives about end-of-life issues is the 

employment of qualitative methods commonly 

involving interviews and focus groups. However, 

there is limited debate about the ethical and 

methodological issues faced in practice let alone the 

challenges associated with international comparison 

of such research. Referring to an exploratory research 

project, in which a collaborative of seven researchers 

experienced in the field of end-of-life care reflected 

upon six end-of-life care studies, conducted with older 

people in four European countries (Belgium, 

Germany, the Netherlands and the United Kingdom), 

major challenges of this kind of research will be 

presented. 

Some common themes were raised and identified in 

the interviews across all countries, such as place of 

death, decision-making, experiences of death and 

bereavement as well as good death. However, keeping 

an eye on the different cultural contexts shaped by 

different health care systems and legal frameworks for 

end-of-life issues raises some limitations to a bare 

comparison of data. Not least because of the 

sensitivity of the issues involved different research 

strategies in different studies and countries can be 

observed. Regarding methodological as well as ethical 

challenges in this kind of research a range of common 

issues revealed, like accessing people, the use of 

interview guides, managing emotions, the presence of 

companions, and reciprocity. Formal ethical review 

committees rarely take into account these complex 

issues. Therefore it is it necessary to maintain an 

ongoing reflexive stance to enhance qualitative 

research practice in the intersecting fields of ageing 

and end-of-life studies. 

A hallmark for qualitative research is the close link 

between the data and the context and process by 

which they were generated and this has to be 

considered carefully when dealing with sensitive 

issues like death and dying, even more so in crossnational 

studies. A precondition for this is the 

readiness of researchers to engage in an open dialogue 

about experiences, including emotional issues. Since 

this is no common part of scientific culture such a 

process of reflection has to be organized and 

facilitated carefully and needs specific resources. 

Sharing research practice across cultures is important 

to increase awareness of the commonality of these 

issues in older person end of life care, to learn from 

each other and to be aware of possibilities and 

limitations for managing such issues across national 

boundaries. 

Palliative Care in the Community 



Training GPs in Early Identification of and 

Proactive Care in Palliative Care Patients 

Thoonsen B. 1 , Engels Y. 2 , Groot M. 2 , van Weel C. 1 , Vissers 

K. 2 , van Rijswijk E. 3 

1 UMC St Radboud, Dept of Primary Care and Dept of 

Palliative Care, Nijmegen, Netherlands, 2 UMC St 

Radboud, Nijmegen, Netherlands, 3 UMC St Radboud, 

Dept of Primary and Community Care, Nijmegen, 

Netherlands 

Background: how to structure palliative care 

proactively, to improve different aspects of the quality 

of the remaining life of patients with severechronic 

diseases such as COPD, CHF and cancer. Aim of this 

sub study is to evaluate how the GPs experienced this 

training andwhat they still use in clinical practice. 

Aim: General practitioners (GPs) were trained in how 

to identify palliative patients in an early phase of their 

disease trajectory and Method: were trained to use 

two tools. The first tool is a plasticized card (see figure 

1) with indicators to identify and recognize patients 

withrespectively cancer, COPD and CHF as being in a 

stage that palliative care should be considered, the socalled 

´RadboudIndicators Palliative Care Needs´ 

(RADPAC). The second tool is on the back of the same 

plasticized card describing four differentdomains 

(1meaning and psychological status) which served as 

a reminder for the structure of proactive planning 

(Proactive Palliative CarePlanning Card, 

PPCPC).Experiences of the GPs are evaluated by use of 

semi structured telephone interviews and 

questionnaires.Sixty GPs were trained, during two 

training sessions of 2 hours each followed by two 

group coaching sessions. Theyst somatic, 2nd care 

provision and activity of daily living, 3td social 

context and financial domain and 4th sense of 

Results: care status with patients, especially in 

patients with COPD and CHF. The proactive care 

planning using the four domains worked out well for 

the GPs. The tool served as an good ágenda´ in 

providing and planning primary palliative care. 

Preliminary analysis revealed the GPs appreciated the 

training very much. They find it difficult to discuss 

the palliative 



Finding a Place for Primary Palliative Care in 

Germany 

Schneider N. 1 

1 Hannover Medical School, Institute for 

Epidemiology, Social Medicine and Health Systems 

Research, Hannover, Germany 

Aims: To discuss the interfaces of generalist and 

specialist palliative care, and the need to develop 

primary palliative care, using the example of the 

recently introduced legal right to specialist palliative 

care in the community in Germany (SAPV). 

Methods: Findings of three studies are presented: (1) 

Delphi study with public health experts and palliative 

care experts; (2) focus group discussion with GPs, 

palliative care specialists, geriatricians and nurses; (3) 

GP survey. 

Results: Conflicting role definitions and deficiencies 

in collaboration between GPs and medical specialists 

are barriers to providing appropriate palliative care in 

German. For example, some GPs criticise the 

increasing specialisation in palliative care, whereas 

palliative care specialists criticise the GPs` lack of 

training. However, overall GPs appreciate the 

establishment of specialist palliative care services in 

the community (SAPV) as introduced with the 2007 

health care reforms. They favour counselling and 

collaborative services which allow the GPs to 

continue their central role in patient care. Despite 

their openness towards specialist palliative care, GPs 

are sceptical whether SAPV will actually improve 

health care for older patients in the last phase of life 

who are the largest group of palliative patients in 

primary care. 

Conclusion: The current focus of specialist palliative 

care on cancer patients contrasts with general practice 

with its focus on older non-cancer patients who are 

more common. This may be a reason for the GPs` 

scepticism whether SAPV will actually improve health 

care. However, SAPV has the potential to fulfil GPs` 

expectation and to improve collaboration. To permit 

universal access to end of life care, primary palliative 


care needs a parallel academic and clinical 

development with specialist palliative care. 



Primary Palliative Care in Africa 

Barnard A. 1 , Murray S. 2 

1 University of Cape Town, Palliative Medicine, Cape 

Town, South Africa, 2 Edinburgh University, General 

Practice section, Centre for Population Health 

Sciences, Edinburgh, United Kingdom 

Background: Palliative Care always has been a 

primary care discipline in Africa. The distribution of 

medical services is sparse and the population so 

widespread that specialist palliative care, as it is 

understood in the rest of the world, is not a viable 

model provision. Equitable distribution of care 

requires planning and judicious use of limited 

resources; there is an imperative to develop palliative 

care training in all primary care professionals who are 

often doctors, but also nurses and clinical officers. 

There is a high burden of disease requiring palliative 

care like HIV/AIDS, cancer, renal failure and 

cardiovascular disease; the need appears 

overwhelming. 

Response: The hospice movement started in Africa 

in 1979. The first hospice was founded in Zimbabwe 

and there is now a palliative care presence in 28 

countries. Clinical care and training of professionals 

takes place by community and hospital based 

palliative care teams.There is increasing teaching of 

palliative care to undergraduate doctors, nurses and 

other professions but this needs urgent development. 

A Post-Graduate Diploma in Palliative Medicine and a 

Masters Degree Programme including research 

training are in place in Cape Town. Makerere 

University in Kampala, Uganda, offers a BSc degree in 

Palliative Care.Research in palliative care is 

developing in Africa, supported by specialist units like 

Kings College London and others. The International 

Primary Palliative Care Research Group (IPPCRG) 

focuses attention on local research to develop local 

practice. The last meeting of the IPPCRG took place in 

Cape Town and a range of research projects from 

Africa was presented.Centres of excellence in 

palliative care have developed as the need and 

opportunity arose, in teaching, research, clinical 

practice, advocacy and development. These need 

support and encouragement. 

Discussion: Palliative care is developing in Africa, 

with most care being delivered in the community. 

African experience can contribute to the development 

of primary palliative care practice and research in 

Europe, and vice versa. 

Leadership – Examples 



“Together for a Better Life” – Creating a Model 

for Palliative Care in Jordan 

Bushnaq M.A. 1 

1 Jordan Palliative Care Society, Amman, Jordan 

Jordan is a small country with a population of 5.6 

million. As a result of Jordan palliative care initiative, 

palliative care servixe started in King Hussein Cancer 

Center, morphine consumtion increased more than 4 

folds in 6 years, and 2 physicains joined international 

palliative care fellowship training in San Diego 

Hospice and Palliative Care. 

Despite this success, there are still many challneges; at 

least 90% of patients who needs palliative care have 

no access to this service. most of the doctors still needs 

to bettert understand the concept of palliative care 

and to change their behaviour in releaving pain and 

suffering. On the other hand; an accumulating 

experiences has shown that the patients and care 

givers needs a place where they can share their 

feelings, communicate with others and find hope. 

And that was the idea for this clinic, and the the 

vision “together for a better life”. 

Jordan Palliative Care Society was launched on 

January 2011. the vision is to implement palliative 

care in Jordan. the society is coordinating national 

efforts for training and education, advocacy and 

creating national guidelines. 



Staff Support and Staff Stress: Leadership and 

Management Responsibilities 

Renzenbrink I. 1 

1Lakeside Education and Training, West Melbourne, 

Australia 

The need to care for the caregiver has been 

acknowledged from the beginning of the modern 

hospice and palliative care movement. However, it is 

often left to individuals to manage their own stress 

with the message “If you can’t stand the heat of the 

kitchen, get out!” Leaders and managers need to be 

aware of research and best practice in the area of 

caregiver stress and staff support in order to develop 

staff support services that strike a healthy balance 

between individual and organizational 

responsibilities in this often neglected area of care. 

The care of staff is inextricably connected to the 

quality of patient care and the ability to maintain 

compassionate involvement. 



Mediation within Collaborative Teams – A 

Challenge for Leadership 

Nauck F. 1,2 

1 University Göttingen, Department of Palliative Me, 

Göttingen, Germany, 2 Centre of Anaesthesiology, 

Emergency Medicine and Intensive Care, Georg- 

August-University Göttingen, Göttingen, Germany 

Palliative care with its holistic approach becomes 

more and more part of medical treatment in hospitals 

and home care. In the classical health system, 

especially in hospital care with its conservative or 

surgical disciplines, there are hierarchic structures to a 

variable degree, where doctors normally occupy the 

leading position. The aims of palliative care, i.e. 

sufficient control of physical, psychosocial and 

spiritual symptoms, can only be achieved when 

different professions are able to work together and 

collaborate. Collaboration means that all members of 

the collaborative team are able to share their 

experience from their different background in 

training and education as doctors, nurses, social 

workers, psychologists or spiritual care providers. 

Therefore, teamwork and teambuilding is essential for 

sufficient palliative care. But what can be done, if the 

team does not collaborate? 

One way to achieve an effective collaboration may be 

to mediate. Mediation can be used as a way of 

resolving disputes between two or more people. The 

mediator assists in negotiating the conflict and helps 

to find a way of communication and teamwork that 

respects the different viewpoints. This may be a first 

step to express a view on what might be a fair or 

reasonable settlement. Effective collaboration is 

essential to reach the aim of good care of the dying. 

Mediation may be a challenge for leadership in 

palliative care. Leadership is essential even in the field 

of the care for dying people, but the classic role model 

of leadership may fail in palliative care because of the 

multidisciplinary team members and their different 

educative background and socialization. As treatment 

goals in palliative care are not always clear, a culture of 

open discussion with all members of a team on the 

same level of acceptance and clear structures are 

needed. Mediation may be helpful to improve the 

dialogue between different team members by 

assessing and harmonising different goals. 



Media Campaign as a Hospice Education for 

Public 

Muszbek K. 1 

1 Hungarian Hospice Foundation, Budapest, Hungary 

Background and aims: Death and dying belong to 

taboos in Eastern European region. Misbelieves of 

pain control may actually influence the proper 

symptom control. Complex hospice care is available 

only at a few health care services. The aim of publicity 

campaign was to increase awareness on hospice care 

and teach students on dignity of life. 

Method: During the last decade several campaign 

were organized with the participation of famous 

artists. Various TV spots - based on the personal 

confessions of well-known artists appeared on TV 



channels, websites and YouTube. Fields of Hope 

program was launched in 20 cities, with around 40 

schools and with thousands of students. Daffodil 

bulbs were planted on the main squares of cities, 

flowers created the word HOSPICE. Teachers of 

schools were trained on the psychology of loss and 

how to manage it. 

Results: Media campaign on dignity of life was 

extremely successful, awareness on hospice increased 

with 36%. Participation of well known persons was a 

great help in dissolving taboos around cancer and the 

acceptance of palliative care. During the Fields of 

Hope project the collaboration with city 

governments, school directors and teachers was 

unexpectedly good. Due to the popularity, from 2007 

further18 cities and 30 schools joined the program. 

Conclusions: Media plays an essential role in 

shaping common knowledge on cancer, death and 

dying. The participation of celebrities may draw 

attention on dignity of life and help to accept hospice 

care as a way to ease distressing symptoms in the end 

of life. Broadcasting programs on Fields of Hope 

opened a new way of communication on dignity of 

life and death. 

Palliative Care for Hard-to-Reach 

Populations: Refugees, Asylum 

Seekers and the Homeless and the 

Influence of Poverty 



Palliative Care for Prisoners: A Scoping of the 

International Literature and the Evidence 

from the UK 

Payne S.A. 1 , Turner M. 1 , Barbarachild Z. 1 , Kidd H. 1 

1 Lancaster University, International Observatory on 

End of Life Care, Lancaster, United Kingdom 

Aim: The purpose of this paper is to describe the 

international literature on palliative care in prison 

and present evidence from a study of palliative care in 

prisons conducted in North West England. 

Scoping of literature: 147 papers identified from 7 

countries (62% from USA) but only 8 empirical papers 

(6 USA, 2 UK). Keys issues included: tensions between 

care and custody, inequity of treatment, role of prison 

as punishment, little acknowledgement of special 

needs of disabled or frail prisoners, concerns about 

medication usage. 

Methods: This study aimed to evaluate palliative care 

provision as reported by 17 prison healthcare and 9 

specialist palliative care staff. Prison staff participated 

(3 from each of 6 prisons) in an interview and 16 a 

questionnaire designed to assess staff knowledge, 

skills and confidence in palliative care. Interviews 

were conducted with nine specialist doctors and 

nurses from four hospices located near the prisons. 

Qualitative data were subjected to a framework 

analysis, and numerical data were analysed using 

descriptive statistics. 

Results: Prison healthcare staff identified factors that 

contribute to good palliative care, including 

relationships both in and outside the prison, 

communication, staff attitudes, environment, 

equipment and opportunities for training and 

education. Barriers to good palliative care that were 

identified included the prison environment, security 

considerations, lack of staff knowledge and 

experience, protocols and procedures and a lack of 

support. Some specialist palliative care providers 

reported creative responses to requests for help and 

support from prison healthcare staff, and have 

provided appropriate and flexible services, either in 

prison or in a hospice. Two case studies of prisoners 

will illustrate the issues. 

Conclusion: This study suggested a number of ways 

to improve palliative care for prisoners, and indicated 

that local links between specialist palliative care and 

prisons are developing rapidly. 

27 

Parallel sessions





Asylum Seekers and Refugees: Implications 

for Palliative Care in Europe 

Dodds N.G.J. 1 

1 St Christopher’s Hospice, Home Care, London, 


This presentation will highlight the distinct needs of 

asylum seekers and refugees in relation to palliative 

care in Europe. Despite sharing a label given by the 

international community distinguishing these groups 

from others, asylum seekers and refugees are not a 

homogenous group and as individuals do not 

necessarily share a similar set of clearly defined needs. 

There is a wealth of literature on the needs and 

experiences of these groups, yet not in relation to 

palliative care. 

Asylum seekers and refugees remain high on the 

agenda of political and media debate, and those 

responsible for providing health and social care have a 

considerable challenge in attempting to ensure that 

they can access appropriate services. Whilst not 

excluded by law, it is clear that asylum seekers and 

refugees continue to experience some degree of social 

exclusion. There is evidence that members of all 

ethnic minority groups are rarely afforded the access 

to specialist palliative care that they require. 

This presentation will consider the implications of 

these issues for palliative care providers in Europe. 



Travellers – Cultural Conditions of Death and 

Dying in Ireland 

Mc Quillan R. 1 

1 St Francis Hospice, Dublin, Ireland 

Irish Travellers, a minority group in Ireland, are 

defined by mobility although many live in 

permanent accommodation most of the year. Irish 

Travellers also live in the UK and USA. Irish Travellers 

have poorer health status and shorter life expectancy 

than the settled community. Irish Travellers 

experience discrimination and get poor follow up 

from health services. Research done with Irish 

Travellers shows that Travellers are reluctant to use 

hospice services because they represent loss of hope. 

Open communication with the patient is not valued. 

Family is very important and large numbers gather 

when someone is sick. This can pose difficulties for 

organisations. Hospitals are the preferred places of 

care as they seem to offer hope for cure. Traditionally 

when someone died in a trailer or caravan the family 

would no longer live there. The trailer may be burnt or 

sold because of the sadness associated with the place 

of death. When a Traveller dies in a house, the family 

may move away for a period of time, and not return 

until the house has been redecorated and blessed. 

Travellers are very religious and it is important that at 

times of sickness they have religious support. 

Travellers will also tend to use both faith healers and 

other types of healers and will also travel great 

distances to see.Following a death Travellers tend to 

have very large funerals and thousands may come. 

Different Traveller families have different mourning 

rituals including monthly remembrance masses for a 

year, elaborate head stones and grave ornamentation 

and a large gathering one year after the death for the 

blessing of the cross. This can lead to tensions 

between Travellers and the settled 

community.Palliative care professionals who are 

working with the Travelling community need to 

recognize that although there are cultural traditions, 

families may have different practices which can be 

supportive to the patient and family. 



Palliative Care for Hard to Reach Populations 

Mwangi-Powell F.N. 1 , Kiyange F. 2 

1 African Palliative Care Association, Management, 

Kampala, Uganda, 2 African Palliative Care Association 

(APCA), Programmes, Kampala, Uganda 

Provision of palliative care for hard to reach 

populations requires partnerships and collaboration 

among partners to ensure easy access to services 

through a continuum of care, despite the recipients 

challenging environmental circumstances. It is also 

important that such care is designed to give equitable 

access to quality palliative care nationwide, without 

marginalisation or neglect of special care needs in 

different care settings. 

Special needs populations include institutionalised 

people such as prisoners, members of the armed 

forces, mentally and physically challenged people, 

refugees and internally displaced persons (e.g. in 

camps), children with a life-threatening illness or 

whose parents have a life-threatening illness, the 

elderly, religious leaders (due to expectations they 

won’t get certain diseases), the homeless, people with 

substance abuse problems, and closed or difficult-toreach 

communities such as remote tribes. The issues 

affecting incarcerated, institutionalised and displaced 

people are more traumatising, with higher risks of 

rights abuses, HIV infection and limited access to 

palliative care 

It is important to recognise that people with special 

needs will be present across all identified patient 

populations and do not represent distinct and 

separate groups in the community. An effective 

communication strategy is needed for special needs 

populations, to cater for their distinct needs. 

Communication links must be established with 

communities in institutions for special populations, 

such as health care staff, administrators and 

community members such as prisoners. These people 

need to die with dignity, with access to family and 

peers for psychological support. For some people, 

their current place of residence such as a prison will be 

their last home; therefore there is need for them to 

access services in that setting. Special needs could 

hinder access to care because different needs may 

require addressing by different service providers. 

There are also perceptions that compassionate care 

cannot take place in certain environments such as 

prisons, and there is a lack of Prioritisation for 

planning and budgeting for palliative care services in 

institutions for Special needs populations. The African 

Palliative Care Association has developed a set of 

palliative care standards in which under the principle 

of holistic care, the standard on palliative care for the 

special needs populations is well articulated. The 

presentation will provide some insights on what this 

standard advocates for and share examples of the 

most innovative projects across Africa. 

Developing Guidelines – A Session 

on EU Projects 



Development of WHO Treatment Guidelines 

on Pain 

Scholten W. 1 

1 World Health Organization, Essential Medicines and 

Pharmaceutical Policies, Genève, Switzerland 

Aim: To provide information on the development of 

WHO Treatment Guidelines on Pain with a focus on 

the recently published WHO Guidelines on 

Pharmacological Treatment of Persisting Pain in 

Children with Medical Illness. 

Background: Pain, like palliative care, is a 

crosscutting issue for organizations that are organized 

by disease, e.g. the World Health Organization 

(WHO). This may be the explanation why WHO 

never developed any pain treatment guidelines 

beyond cancer pain treatment. However, it is pivotal 

for improving access to opioid analgesics to have clear 

recommendations on the use of such medicines. 

Therefore, the WHO Access to Controlled 

Medications Programme decided to develop WHO 

Treatment Guidelines on Pain that will cover all 

various types of pain. 

Methods: The development of the WHO Guidelines 

on Pharmacological Treatment of Persisting Pain in 

Children with Medical Illness started in March 2009; 

they were published in Spring 2011. Corresponding 

guidelines for pain in adults and guidelines on acute 

pain will be developed next, subject to the availability 

of funding. All guidelines will focus on 

pharmacological treatment. They are based on the 

procedures and methods prescribed by the WHO 

Guidelines Review Committee. These procedures and 

methods warrant the quality. Basic values are 

evidence and transparency. All evidence will be 

assessed using the GRADE methodology. 

Recommendations are classified as “strong” or “weak” 

and the level of the evidence for each 

recommendation will be indicated. 

Outcome: It is the first time in history that WHO 

explicitly indicates that all moderate and severe pain 

in children should be addressed. The approach is no 

longer a “three-step ladder” but a “two-step 

approach”, consisting of a first step of non-opioid 

analgesics, followed by a second step of strong opioid 

analgesics. Codeine or tramadol are no longer 

recommended for use in children. 

The guidelines also include a research agenda. 



EPCRC – New Guidelines for the Management 

of Depression, Cachexia and Use of Opioids in 

Cancer Pain 

Higginson I.J. 1 , Caraceni A. 2 , Radbruch L. 3 , Haugen D. 4 , 

Kaasa S. 5 , EPCRC 

1 King’s College London, Cicely Saunders Institute, 

Department of Palliative Care, Policy & 

Rehabilitation, London, United Kingdom, 2 National 

Cancer Institute, Palliative Care Unit, Milan, Italy, 

3 Universitatsklinikum, Klinik fur Palliativmedizin, 

Bonn, Germany, 4 Norwegian University of Science 

and Technology, Department of Cancer Research & 

Molecular Medicine, Trondheim, Norway, 5 University 

Hospital of Trondheim, Palliative Medicine Unit, 

Trondheim, Norway 

Three work packages within the European Palliative 

Research Collaborative (EPCRC) aimed at developing 

guidelines for the management of symptoms 

important in palliative care for: 

- The management of depression 

- The management of cachexia 

- The management of cancer pain using opioids 

The EPCRC was funded through the Sixth Framework 

Program of the EU. All three symptoms and common 

cancer patients, particularly those with advanced 

disease, are associated with adverse outcomes. Related 

workpackages considered assessment and 

classification of these symptoms. 

Our aim was to produce European evidence-based 

clinical guidelines. All work packages used common 

approaches combining Delphi exercise, advice from 

expert panels and systematic literature reviews, where 

appropriate. Our aim was to inform practice, establish 

policy, promote European consensus and ultimately 

improve patient outcomes. Recommendations were 

devised using the best available evidence. Where 

evidence was absent or equivocal, Delphi consensus 

methods were implemented to elicit and refine expert 

opinion. Evidence was graded according to the 

process proposed by GRADE. 

The depression guideline has three main sections: (1) 

prevention; (2) detection, diagnosis and assessment; 

and (3) treatment. The prevention section outlines 

strategies such as optimal palliative care and support, 

effective communication and information-giving. 

The detection section provides recommendations on 

symptoms, screening, diagnosis and severity 

assessment. The treatment section gives guidance on 

treatment decisions including choice of psychological 

therapy and antidepressant medication. The cachexia 

guideline also has three main sections: (1) definition, 

diagnosis and classification, (2) patient management 

and (3) specific treatments. The first section gives 

guidance on staging and symptoms, prognosis, and at 

risk groups. The management section considers 

communication and the role of palliative care and the 

specific treatment considers nutritional and 

pharmacological treatments. The pain guidelines are 

focussed on the use of opioid analgesics in the 

treatment of cancer pain and are based on the results 

of the 22 systematic literature reviews. 

These are the first comprehensive, evidence-based 

guidelines on managing depression and cachexia in 

palliative care. The pain guidance is an update of 

previous opioid recommendations. Different 

approaches were needed to manage the different 

levels of knowledge in the fields. The guidelines have 

the potential to improve patient outcomes by 

enabling clinicians to access and implement 

evidence-based knowledge quickly and easily. 



PRISMA 

Bausewein C. 1,2 , Daveson B. 3 , Simon S.T. 4 , Benalia H. 1 , 

Higginson I.J. 1 , on behalf of PRISMA 


London, United Kingdom, 2 German Association for 

Palliative Medicine, Berlin, Germany, 3 King’’s College 

London, Cicely Saunders Institute, London, United 

Kingdom, 4 University of Cologne, Centre for 

Palliative Medicine, Cologne, Germany 


PRISMA is an international project with 11 partners in 

nine European countries and Africa funded by the 

European Commission. It aims to harmonize research 

and outcome measurement in palliative care across 

Europe. 

Outcome measurement has a major role to play in 

improving the quality, efficiency and availability of 

palliative care both in clinical care and research. 

Measuring changes in a patient’s health over time, 

and establishing reasons for those changes, can help 

service providers focus on learning and improving the 

quality of services. Outcome measures, specifically 

patient reported outcome measures (PROMs), are 

tools that can effectively be used in palliative care to 

assess and monitor care, either for individual patients, 

or across populations. Outcome measures put the 

patient at the centre of care and focus on what matters 

to them. 

A recent online survey with palliative care 

professionals across Europe and Africa conducted as 

part of PRISMA identified the need for guidance in the 

use of PROMs. This was supported by an expert 

workshop which called for training, support and 

resources in outcome measurement for clinical care, 

audit and research for palliative care clinicians and 

researchers. In addition, a workshop focusing on 

cultural issues within palliative care also conducting 

as part of the PRISMA project highlighted the need for 

cultural adaptation of outcome measures in palliative 


In consequence, a guidance on outcome 

measurement in the palliative care setting has been 

developed. This includes how to choose an outcome 

measure along with information and practical 

strategies on implementing outcome measures in 

organisations, and how to analyse and interpret 

findings. The guidance will be presented at the 

conference. 



The Liverpool Care Pathway for the Dying 

Patient (LCP) – A Continuous Quality 

Improvement Programme 

Voltz R. 1 , on behalf of OPCARE9 

1 University Hospital Cologne, Cologne, Germany 

In complex clinical situations, a clinical guideline is 

meant to help a team to better care for patients by 

providing a framework (a) what to think of, (b) whom 

to include and (c) to give reasoning when in the 

individual situation you have to deviate from the rule. 

The Liverpool care pathway (LCP) supports clinical 

decision making and incorporates clinical guidelines 

for the complex and sometimes for everybody 

involved frightening situation of caring for a dying 

patient and his family. Since its first version, the LCP 

has undergone a cycle of continuous quality 

improvement and is currently available in its 12 th 

version. This process has so far been driven largely by 

the centre of origin, Liverpool, associated with a more 

loosely organised network of currently 20 countries 

using the LCP. Based on this network, EU funding was 

secured for OPCARE9, a 7 th Framework Support and 

Coordination Program (funding period 2008-2011), 

and this has given this process a sound international 

dimension. 

During the OPCARE9 project, the current knowledge 

on the care of the dying has been comprehensively 

evaluated. Systematic reviews analysed the current 

knowledge in literature, and Delphi rounds with 

hundreds of experts have collected and if possible 

reached consensus on sometimes difficult topics. 

OPCARE9 in its work packages has looked into the 

signs and symptoms of dying, end-of-life decision 

making, pharmacological and non-pharmacological 

care in the dying phase, spirituality, psychological 

and social support and the role of volunteers. 

Furthermore, a sound international network has now 

formed from which a quite unique structure has been 

launched to closely link new scientific evidence with a 

clinical tool which is in use around the world: After 

OPCARE9 funding, the “International OPCARE 

Research Collaborative” (IORC) will pursue future 

research projects on the topics of OPCARE9 work 

packages, and the “International LCP Reference 

Group” will both incorporate new research findings 

into the continuous quality improvement cycle, as 

well as giving ideas for research projects coming 

directly from clinical experience. 

Developing the LCP into the future gives an excellent 

example how to constantly improve quality by 

linking research data and clinical experience. 

Challenges in Paediatric 

Palliative Care 



Challenges in Paediatric Palliative Care 

Mcnamara-Goodger K. 1 

1 ACT, Bristol, United Kingdom 

This paper will consider the evolution of children and 

young people’s palliative care services across the UK 

over the past 25years and to embed the lessons of the 

past as we embrace future developments. 

This presentation will consider the development of 

children and young people’s palliative care across 

health, social care and education, in the statutory and 

voluntary sectors in the UK. 

It will explore how the evolution of services has led to 

the development of Government strategy in all 4 UK 

countries and how this impacts on the future 

developments we anticipate happening. 

The presentation will consider how the voice of 

children, young people and their families can be 

heard and influence the development of standards for 

service delivery. It will also explore the needs of young 

babies and young people and the links needed 

between services to ensure that there is access to 

palliative care for these specific age groups 

It aims to explore the potential to use the strategy to 

influence the commissioning, provision and delivery 

of services while working in partnership with 

children, young people and their families. 



Agitation and Sleep Disturbances in Children 

and Young Adults with Non-cancer Life 

Limiting Diseases – A Challenge for 

Assessment and Therapy 

Tietze A.-L. 1 , Blankenburg M. 1 , Zernikow B. 1 

1 Witten/Herdecke University, Vodafone Foundation 

Institute and Chair for Children’s Pain Therapy and 

Paediatric Palliative Care, Datteln, Germany 

Introduction: Although sleep disturbances in 

children with non-cancer life limiting diseases are of 

central clinical importance, there is little research on 

that topic. There is no data available on frequency, 

severity or aetiology of sleep disturbances and related 

symptoms in this specific patient group. 

Objective: To review the current state of research 

and outline future research objectives. 

Methods: We searched international scientific 

databases for relevant publications from 1980-2009. 

From all papers qualifying for further analysis we 

retrieved systematic information on sample 

characteristics, sleep assessment tools and their test 

quality criteria, and core findings. 

Results: 61 publications including 4392 patients 

were categorized as “mixed” (reporting on 

heterogeneous diagnoses), or “specified” papers 

(specific diagnoses) based on ICD10 classification. To 

assess sleep disturbances, most authors relied on 

subjective instruments with poor psychometric 

quality. Mean prevalence of sleep disturbances was 

67% (76%,”mixed” group; 65%, “specified” group). In 

children suffering severe global cerebral injury, the 

prevalence of sleep disturbances was even higher 

(>90%). The most frequent symptoms were insomnia 

and sleep-related respiratory disorders. Some of these 

symptoms were closely associated with specific 

medical syndromes. 

Conclusion: There is an urgent need for sleep 

disturbance assessment tools evaluated for children 

with non-cancer life limiting diseases. By use of 

validated assessment tools, patient factors, which may 

be crucial in causing sleep disturbances, may be 

investigated and appropriate treatment strategies may 

be developed. 



Family as Caregivers 



Family Carers’ Support in Hospices in the UK 

Firth P.H. 1 , Association of Palliative Care Social Workers 

UK 

1 None, St Albans, United Kingdom 

Background: In the UK there has been some key 

changes and improvements in the available support 

for carers since the UK government published its 

National Strategy for Carers in 1999. Three key points, 

health needs should be met, respite offered and 

financial help should be available. 

.In 2005 Help the Hospices launched the new “Care 

for the Carers of the Terminally ill” project with the 

aim to build up services for informal carers at local 

and national level. There were two significant 

elements of this project ;a three year grant programme 

and a research project was commissioned to evaluate 

the initiatives. 

In 2008, Help the Hospices, as a response to the UK 

National Strategy for Carers 2008-2016, published the 

second edition of the Carers Services Guide and the 

European Association of Palliative Care Task force on 

Family Carers was formed. Most of us will be carers at 

some time in our lives either as the result of a family 

crisis or as a gradual response to severe illness. In 2006 

there were an estimated six million carers in the UK, 

including more than 175,000 under the age of 18 

years. If people are to be cared for at home the need 

for carers support is crucial and many will be elderly 

and have significant health needs. 

Aims: To examine the developments in carers 

support in UK hospices since 2005. 

To look at the different types of services offered by 

surveying current provision 

To discuss available research and evaluation 

The UK End of Life Care Strategy published in 2008 

recognised that carers need extensive support to help 

patients have choice about their care. The new Social 

Care Framework , part of the strategy calls for Health 

and Social Care Agencies to work together and one 

aim will be to look at new joint developments 

Conclusions: The European wide financial restraints 

will mean that support for the dying and their carers 

will be cut. It is essential that we focus resource son 

schemes that service users feel are helpful. 



Family Caregiving in Rural Areas of Eastern 

Europe: Cultural Norms and Expectations 

Mosoiu D. 1 

1 Hospice Casa Sperantei, Educatie, Brasov, Romania 

Providing palliative care in rural areas of Eastern 

Europe (EE) is a challenge due to greater poverty of 

rural regions, low availability of trained medical staff 

willing to serve these communities, difficult access to 

medical facilities and drugs, underdeveloped 

infrastructure, etc. However palliative in rural areas is 

a need as there are countries in EE that have a 

dominant rural population ( Moldova 59%. Albania 

54%) or there after the shift of population to urban 

areas the elderly population has been the one to 

remain behind (Ukraine, Romania). In EE countries 

there are few PC initiatives to serve the rural regions. 

The burden of care remains mainly in the 

responsibility of the families with the support of the 

community. Caring for the severely ill patients is a 

shared responsibility of the extended family, but 

neighbors join the care and also support the family for 

preparing the funeral and the regular memorial 

services done in the following years after the patient’s 

death (Romania, Moldova). Christian traditions are 

stronger and making peace with your family members 

and the larger community, as well as having 

confession and communion before death is 

important both for the patient and the remaining 

family. Suffering is not perceived as the ultimate 

enemy but as a possible opportunity for repentance. 

In rural communities’ birth, wedding and death are 

problems of the community; children to elderly, all 

take part in them. As result life and death are more 

integrated and there are fewer requests for futile 

treatments. Hospice Casa Sperantei has 2 teams to 

cover the rural part of Brasov County and their 

experience will be highlighted. 

29 

Parallel sessions





What Factors Influence Family Care Abilities, 

in a Context of Palliative Care? 

Reigada C. 1 , Ribeiro E. 2 , Anna N. 3 

1 Portuguese Institute of Oncology of Porto and 

Catholic University of Portugal (Universidade 

Católica Portuguesa), Social Work, Porto, Portugal, 

2 University of Minho, Braga, Portugal, 3 University of 

Barcelona and Catalan Institute of Oncology, 

Barcelona, Spain 

Only a functional family can carry out the task of 

caring. The ability to care is the result of a learning 

process, an education that appears first, in the family 

group. It is important that palliative care services 

promote other elements of the patients support group 

in order to be able to draw on the expertise/abilities of 

each element, when necessary. 

Aim: To evaluate the factors influencing the ability to 

care of cancer patient families, in palliative care. 

Methods: Cross-sectional study, qualitative, 

observational, based on Grounded Theory, using Focus 

Groups (FG), including family members (>18 years) of 

cancer patients accompanied in a Palliative Care Service 

(PCS). The relatives were chosen from a theoretical 

sample, given their experience in caring cancer 

patients, looking at their direct or indirect 

involvement in caring. Family members should have 

interest in participating in the study and be able to 

express themselves. 

Results: 13 “relatives” of patients participated in two 

FG. (Average age: 47 years old). The 1 st FG included 2 

spouses, 1 son, 1 goddaughter, 1 neighbour and 1 

daughter-in-law which support the patients on an 

emotional, and companionship level and by 

monitoring clinic consultations. In the de 2 nd group, 

family members (3 children, 3 grandchildren and 1 

spouse) support patients predominantly in 

locomotion, companionship and emotionally. From 

the data analysis we identified 4 dimensions with 

different categories that constrain the ability to care: 

1-Practic Dimension (internment, technical aids, 

social/health care support, psychological support, 

travel expenses); 2-Relational Dimensional (ties, 

losses, privacy, intimacy, caregiver support, sharing); 

3-Internal Experience Dimension (feelings, coping 

strategies, affection, suffering, death, psychological 

support); 4-State of Health Dimension (recovery, 

symptoms, disease information, vulnerability of the 

caregiver). Conclusions: The physical and relational 

dimensions of each person, his internal experience 

and the perception of the patient health condition, 

will lead the care provided to the patient. The list of 

indicators identified may be useful in the holistic 

assessment of the family. 

* The authors thank the collaboration of Gabriela 

Couto (Palliative Care Service Head Nurse - Sao João 

Hospital of Porto) in this study. 

Reaching Out Towards Dementia 



Palliative Care in Advanced Dementia 

Volicer L. 1 

1 University of South Florida, School of Aging Studies, 

Land O’Lakes, FL, United States 

Advanced Alzheimer’s disease is a terminal illness 

because there are no treatments that would stop or 

reverse its progression. The main goals of care are 

provision of quality of life, dignity and comfort. Three 

main areas are important for quality of life in 

individual with dementia: meaningful activity, 

behavioral symptoms, and medical issues. 

Meaningful activity should be provided even in 

advanced dementia (no evidence of progression to 

PVS) and should include ADLs, physical, cognitive 

and creative activities. Meaningful activities should be 

provided as continuous activity programming, 

tailored to the stage of dementia - Memory 

Enhancement Program for MCI and mild dementia, 

the Club for moderate/severe and Namaste Care for 

severe/terminal stages. Behavioral symptoms occur 

either when the patient is solitary - agitation and 

apathy, or when the patient is interacting with others 

- rejection of care. Agitation and apathy are 

minimized by programs providing meaningful 

activities, but agitation may also be caused by 

depression. Rejection of care is caused mainly because 

the patient does not understand caregiver’s 

intentions, but depression, delusions and 

hallucinations also play a part. Depression is very 

common in patients with advanced dementia and is 

often underdiagnosed and undertreated. 

Management of chronic medical problems should be 

modified in individuals with advanced progressive 

dementia to avoid side-effects that the patients 

cannot report. CPR is not indicated, transfer to a 

hospital for treatment of intercurrent infections and 

fractures may not be indicated, antibiotic treatment is 

less effective and not necessary to maintain comfort, 

and tube feeding does not provide any benefit but 

poses a burden for the patient. Food refusal may be 

managed by diet modification, antidepressants or 

dronabinol administration and choking may be 

decreased by ACE inhibitors and amantadine. Even if 

tube feeding is initiated it can be converted into 

natural feeding. 



Coordination of End of Life Care in Dementia 

Hockley J.M. 1 

1 St Christopher’s Hospice, Community, London, 


Background: Ten percent of the UK population 

have a diagnosis of dementia with the majority of 

those towards the end of life being cared for in care 

homes. These statistics are likely to be the same across 

the western world. Research shows that survival time 

can be anything from 4 years to 15 years from 

diagnosis; however, most of those those aged 90 years 

or above the mean is 3.8years. Dementia is now being 

appropriately seen as a terminal illness without a cure 

which demands greater attention to the 

appropriateness of a palliative care approach. 

Aim of presentation: This presentation will 

highlight the research published that has identified 

symptoms prevalent in end stage dementia such as 

depression; agitation; eating difficulties; constipation 

and pain. Assessment of these symptoms is a priority 

if we are to improve the quality of life for people with 

advanced dementia. Assessment tools used are 

different from those used for symptoms of advanced 

cancer - appropriate tools with examples will be 

highlighted. 

The presentation will also discuss what is the 

appropriate role for specialist palliative care in this 

population? In a recent study looking at the care of 

patients with a diagnosis of far advanced dementia at 

home and in care homes, only 4% of people required 

specialist palliative care advise/support. It is therefore 

important to adopt models of empowerment and role 

modelling for those (especially within mental health) 

whose day to day work is with people who have 

advanced dementia to take on greater responsibility 

for end of life care. 

Predicting the end stage of dementia is often complex 

and many residents with advanced dementia can end 

up dying inappropriately in hospital if there is not 

regular review. Research has shown that with 

monthly multi-disciplinary review and the use of 

tools such as the PIG (prognostic indicator guide) the 

last week/s can be predicted. The debate in relation to 

allowing pneumonia to be the ‘old man’s friend’ will 

also be addressed. 



Guidelines on the End-of-Life Care of People 

with Dementia 

Gove D. 1 , Sparr S. 1 , Bernardo A. 1 , Pointon B. 1 , Martenson 

B. 1 , Tudose C. 1 , Holmerova I. 1 , Cosgrave M. 1 , Jansen S. 1 

1 Alzheimer Europe, Luxembourg, Luxembourg 

In 2007, on the occasion of its annual conference in 

Estoril, Alzheimer Europe set up a working group to 

investigate the end-of-life care of people dying with or 

from dementia. The working group was chaired by Dr 

Sigurd Sparr, Honorary Secretary of Alzheimer Europe 

and its work culminated in the publication, a year and 

a half later, of a comprehensive report combining 

theoretical and philosophical arguments with very 

practical and straightforward advice, including, where 

necessary, information about the medical aspects of 

the end-of-life care of people with dementia. 

The guidelines are targeted at everyone interested in 

providing good end-of-life care to people with 

dementia, not only those in the last stage of dementia 

but also to people in the earlier stages of dementia 

who have another terminal condition. 

In this presentation, Dianne Gove will provide a brief 

overview of Alzheimer Europe’s end-of-life care 

project, explain the terms used and the scope of the 

project and finally, provide details about Alzheimer 

Europe’s position in relation to the provision of good 

end-of-life care to people dying with or from 

dementia. 

Old Challenges of Palliative Care 

Research – Any New Solutions? 



A National and Governmental Perspective in 

Australia on Palliative Care Research 

Currow D.C. 1 

1 Flinders University, Discipline of Palliative and 

Supportive Services, Adelaide, Australia 

In successive national strategies on palliative care, it 

has been recognised that a vibrant and successful 

palliative care research community is pivotal to 

improving the provision of palliative care in Australia. 

The first national palliative care strategy, signed off by 

all States and Territories in the year 2000, explicitly 

recognised the importance of research. 

At a national policy level, a joint approach between 

the federal Department of Health and the National 

Health and Medical Research Council saw a capacity 

building program in research. This allowed 

investigators to establish a track record of NH&MRC 

research using smaller project grants to quickly and 

effectively build that track record. Additionally, 

masters, doctoral and postdoctoral scholarships were 

made available to ensure that there was a career path 

for researchers in palliative care. 

At the same time specific policy was developed 

around improving the evidence base for clinical 

prescribing in palliative care and in order to 

understand the cost effectiveness of pharmacological 

palliative interventions. To this end, the government 

has directly invested in a national clinical trials 

collaborative that has completed its first trial, and to 

date randomised more than 460 participants across 

six studies in 12 sites. 

Overall, this has allowed for capacity building at every 

level of research - basic science, clinical research, 

health services research and population based 

research. 

To date, there is evidence of increasing capacity 

within the sector to compete openly for funds with 

researchers across a spectrum of disciplines nationally. 



Integration of Palliative Care into 

Mainstream Oncology and Basic Science 

Kaasa S. 1,2 

1 NTNU, European Palliative Care Research Centre, 

Dept. of Cancer Research and Molecular Medicine, 

Faculty of Medicine, Trondheim, Norway, 

2 Trondheim University Hospital, Dept. of Oncology, 


Palliative care is an essential part of daily patient care 

at any general oncological department. Despite the 

fact that most of the treatment delivered in oncology 

is either life-prolonging or palliative, most of the 

attention is given to “how to cure the patients”. A 

similar lack of attention is also is observed in the area 

of research. For example the effect of anti-tumor 

treatment (chemotherapy) on symptom management 

is hardly investigated at all. These observations are 

contrasted by the WHO definition of palliative care: 

“Palliative care is applicable early in the course of 

illness, in conjunction with other therapies that are 

intented to prolong lives, such as chemotherapy or 

radiation therapy, and include those investigations 

needed to better understand and manage distressing 

clinical complications”. 

Much attention is given to the treatment of cancer 

pain, and increased attention recently to the 

treatment of cachexia. Despite these efforts, the 

impact on patients’ symptom control has been 

marginal during the last decades. This may be due to 

several factors. 1) Inferior diagnostic precision, 2) Lack 

of continous assessment of symptoms during 

monitoring phase (follow-up) of treamtent, 3) Inferior 

treatment strategies with little or no understanding of 

the clinical as well as the basic biological effect of 

tumor-directed treatment, including chemotherapy, 

on pain and cachexia. The symptomatologists and 


life-prolongonists have not yet joined forces, is it time 

for a change? 

Recently, studies have shown the potential in how 

principles of palliative care may have impact on 

oncology practice, and thereby improving the quality 

of care. Models of oncology palliative care need to be 

re-evaluated, discussed and implemented into 

“mainstream” oncology care. 



Clinical Research – A Part of Daily Clinical 

Practice 

Fainsinger R.L. 1 

1 University of Alberta, Oncology, Division of 

Palliative Care Medicine, Edmonton, AB, Canada 

During routine clinical care we all encounter 

situations that raise questions which we might like to 

see answered by a clinical study. Often addressing the 

question is hampered by a lack of data that could be 

useful for a retrospective study, or we have difficulty 

collecting data in a prospective study design due to 

concerns with burdening staff &/or patients with the 

extra assessments required. If we work in a setting 

where standardized clinical assessments and routine 

data collection are a part of daily clinical practice 

there are endless possibilities and opportunities to 

address clinical questions. The Edmonton Palliative 

Care Program has enjoyed this advantage since the 

late 1980s. Some examples of how this strategy has 

worked to simultaneously improve clinical care and 

clinical research will be used to support the case for 

making clinical research a part of daily clinical work. 



European Commission’s Commitment to 


Trzaska D.K. 1 

1 European Commission, DG Research and 

Innovation, Bruxelles, Belgium 

The European Commission’s commitment to 

palliative care is first and foremost visible in the FP7 

Cooperation programme’s support for translational 

cancer research. A total of €6.1bn has been allocated 

for the FP7 Health programme for the period 2007- 

2013. This programme’s objective is to develop 

patient-oriented strategies from prevention to 

diagnosis with particular emphasis on more effective 

treatment strategies, including clinical research, and 

improving the quality-of-life of patients, for example 

by focusing on palliation of pain, depression and 

fatigue in advanced cancer patients. When assessing 

and improving palliative care across the European 

Union, the availability of healthcare services and 

drugs such as opioids are limiting factors, but 

integrated health networks and national cancer plans 

would constitute significant achievements. 

The programme also supports the aims of Europe 

2020: the Ínnovation Union´. This includes 

coordinating national research programmes, and 

exploring the potential of Public-Private Innovation 

Partnerships and Joint Programming. The key 

objective of this framework is to focus European 

research and innovation effort on the main societal 

challenges faced by Europe. The first pilot project of 

the Innovation Partnerships will be dedicated to 

Active and Healthy Ageing, beginning by early 2011. 

By 2020 this programme should enable citizens to live 

longer independently in good health, adding another 

two healthy years to the average life. 

Paediatric Palliative Care: 

Different Models 



Models of Palliative Care for Children in 

Africa 

Marston J.M. 1 

1 International Children’s Palliative Care Network, 

Management, Bloemfontein, South Africa 

Children’s palliative care is poorly developed in 

Africa, with only South Africa having a national 

programme to develop palliative care for children. 

Despite this, a number of innovative models have 

developed in response to the needs in each 

community and the available resources. Other African 

countries have started to develop their palliative care 

services for children, and Beacon Centres have been 

established in Dar es Salaam, Tanzania; in Kampala, 

Uganda; and in the Hospice Palliative Care 

Association of South Africa where the Boabab website 

Virtual Resource Centre is a different form of Beacon 

centre. 

Children with HIV and AIDS has been the stimulus for 

the development of children’s palliative care and 

many programmes are primarily focused on meeting 

the multiple and complex needs of these children and 

their families. However, other palliative care 

programmes such as the St Nicholas Children’s 

Hospice in Bloemfontein, South Africa, have a 

mission to meet the needs of all life-limited children, 

and have developed an unique regional network to 

catch in a safety net as many of these children as 

possible. 

Most programmes care for children through home 

and community-based care, but there are a number of 

clinics, day care centres, community centres, and 

children’s in-patient units as well, with some models 

meeting the needs of children through a combination 

of different elements to provide a continuum of care. 

Integration into hospital care of children will 

complete the circle of care for these children and the 

presentation will look at the impact of the Bigshoes 

Foundation in South Africa and Umodzi in Malawi on 

palliative care for children in hospitals. 

Support for the different models is backed up by 

education, mentorship, the development of specific 

materials and a textbook for Africa, and advocacy. A 

new curriculum has been piloted in Uganda, Tanzania 

and South Africa and the International Children’s 

Palliative Care Network is developing an e-learning 

course to meet the needs of children and health care 

professionals in developing countries. 

Donors have played an important and influential role 

in the development of children’s palliative care and 

continue to support activities for further progress. 

The presentation will examine the different models in 

Africa, their reason for development and their impact 

on the quality of children’s lives. Proposals to meet 

the gaps in palliative care services for children will be 

examined. 



Different Models of Child Palliative Care 

Support in Belarus 

Garchakova A.G. 1 

1 Belarusian Children’s Hospice, Borovlyany, Belarus 

Belarusian Children’s Hospice (BCH) is an NGO 

founded in 1994. BCH provides free of charge 

palliative care services including medical, social, 

psychological, spiritual and other support to children 

(0-24 y.o.) in life-threatening and life-limiting 

conditions as well as their families. 

The Hospice services patients in Minsk (capital city) 

and in the area of 250-km zone around Minsk 

providing necessary care and support to families at a 

familiar home setting by a multi-professional team. 

In 2009 an Order on Child Palliative Care was adopted 

by the Belarus Ministry of Health which is the first 

official document recognizing child palliative care as a 

very welcomed development. The Hospice works in 

close cooperation with the health care authorities to 

ensure timely and quality support to children. 

One of the important areas of the BCH activities is the 

provision of the respite care to families. The Hospice 

has three fully equipped in-patient rooms for the 

respite care to give families short breaks when young 

patients receive residential intensive-care without a 

close member of their family staying with them. At 

certain times family members can also join their 

children during their in-patient stay. 

BCH has well-equipped summer camp facilities for 

rehabilitation of families in the countryside in Minsk 

Region. This covers support to siblings groups, 

families with children or separate groups of children 

who are under the hospice care. The activities are 

backed up by local and international volunteers with 

the total number of about 200 persons. 

The hospice offers counselling to the parents of 

terminally ill children and bereaved family members. 

It also organizes regular self-help parents’ groups and 

an annual memorial service. 

There is a day care centre in the hospice which 

currently runs 3 sessions a week and each is tailored to 

the needs of different ages of children and young 

adults each day. Children with disabilities and young 

adults are brought to the centre by the hospice’s 



minibus. Here they can play under the guidance of a 

professional therapist, make friends with peers, can be 

entertained by musicians and clowns. 

The day centre is also a place where parents meet and 

run their own support groups. 

BCH has a chapel which is visited regularly by Russian 

Orthodox and Catholic priests. The hospice can 

arrange for chaplains from other denominations and 

religions to visit when necessary. 

Other programmes and areas of the Hospice activities 

are: provision of medicine, vitamins, various hygiene 

items (pampers) and specialized equipment to 

families, volunteer program, information support to 

families and professionals and education, translation 

of various literatures for children, families and 

professionals, consulting, and publications. The 

hospice web-site (www.hospice.by) is regularly 

updated and provides additional information 

resources to the interested visitors. 

The Hospice is a recognized palliative training centre. 

In collaboration with the Belarusian Medical Post 

Diploma Academy, BCH runs palliative training 

courses for healthcare professionals from all over 

Belarus. The Hospice professionals also train parents 

in the palliative procedures necessary for the care of 

their children at home. 

In November 2010 an Order was issued by the Ministry 

of Health to establish a Resource Methodological 

Centre within the structure of the Belarus Ocological 

and Haemotological Centre. However, the latest 

development is that actually the focal point for 

methodologies and practical experience on child 

palliative care is within the Hospice. 

The Hospice has good experience in implementing 

international projects having worked jointly on 

strategies and methodologies on disability issues with 

partners from Europe and CIS, promoting support, 

integration and advocating for vulnerable groups of 

adults and children with disabilities. 



Recent Strategies for the Development in 

Paediatric Palliative Care (PPC) in France 

Wood C. 1 , Schell M. 2 , French PPC Taskforce 

1 CHU Robert Debré, Pain and Palliative Care, Paris, 

France, 2 Centre Léon Berard, Pediatric Department, 

Lyon, France 

Introduction: After a 10 years period with only 

various regional developments in PPC, 2 major events 

occurred in France increasing the quality and 

development in PPC. First, a nationwide University 

based training program for Paediatric Pain and PPC 

was created by some pluri-professional caregivers in 

2008. Second and we’ll focus on that point, the 

French President created in 2008 a special Health 

Ministry Plan aiming the development of PC 

including, for the first time, a chapter concerning 

PPC. We’ll present the key points and conclusions 

concerning these PPC plan. 

Material and methods: Dr Régis AUBRY, expresident 

of the French Palliative Care Society was the 

coordinator of all working groups. For PPC, a 

pluriprofessional taskforce was created in order to 

define the best strategy for the nationwide 

development in PPC and to define how the 4M€ 

available for PPC should be used in the most effective 

manner. 

Results: All experts agreed that the fields in PPC are 

particularly large (ranging from the antenatal period 

to older teens) and vary wildly in relationship to the 

multiple and often rare pathologies encountered. 

Further more, the taskforce members agreed that 

palliative care relates to the sick child, his parents, 

siblings and grandparents. As PPC is needed all over 

France, it was decided to create one specialized PPC 

team in every of the 22 regions all over France. The 

need to increase or create a special palliative care 

culture was pointed out and defined as one of the 

major challenges for PPC teams. The process of 

“acculturation” PPC should be addressed not only to 

specialized pediatric units, but also to all structures 

and care givers in touch with patients and families 

who need PC. Therefore a special requirement 

manuscript and contract document was developed, in 

order to be fulfilled by each team: All teams are 

multidisciplinary and multi-professional. The 

members should act as an expert team in the 

management of pain and symptoms. They should be 

able to coordinate or if necessary to create a network 

for patients and proxies in collaboration with the 

clinical centre of reference and with all other 

caregivers. The PPC team should also organize special 

training programs in PPC as well as participate in PPC 

31 

Parallel sessions



research. In order to respect historical background of 

each region, the local implementation and team 

construction may be different, but the goals are 

identical.Finally, the ministry plan also focused on 

pilot projects concerning respite care and one 

specialized paediatric respite hospice was opened in 

December 2010. 

Conclusion: The French Ministry Plan for the 

development of palliative care has explicitly 

recognized the need to organize palliative care in 

paediatrics. The establishment of a regional resource 

team in PPC in each of the french regions, is an 

important step in the process of “acculturation” 

within palliative paediatric structures. A good 

cooperation between PPC teams and referent 

pediatric centres is certainly one of the keys to success. 



The Children’s Hospice Movement 

Dominica F. 1 

1 Helen & Douglas House, Oxford, United Kingdom 

Ethos and Philosophy of the Children’s 

Hospice Movement 

Almost 30 years after the opening of the first 

children´s hospice, Helen House, Oxford, the basic 

ethos and philosophy of the children´s hospice 

movement remains the same, albeit modified to the 

changing demands of those caring for children with 

life-shortening conditions, whether families or 

professionals. 

Keep it simple! 

The model both architecturally and in ethos is home 

Listen to the families 

Build a relationship of trust with them - they know 

their child better than anyone 

Clinical care must be of the highest standard but it 

should not make the family feel that they have lost 

control 

Professional carers should always be open to learning - 

we never know it all! 

Each individual´s religious belief should be respected 

Where there is friction within a family the 

professional should not be judgemental or take sides 

but recognise that each person reacts differently to 

stress 

Professionals should be ready to be open and honest 

with a child and family if they ask questions or 

indicate in any way that they want to know the truth 

In an ideal world each family should be able to make 

choice at every stage of their child´s illness and death 

from a wide spectrum of alternatives 

Hospice professionals should network with other 

agencies in supporting the families 

We aim to be an extension of the extended family, 

offering friendship, practical help and professional 

care 

Do not copy us - respect your own culture! 

Palliative Care as a Human 

Rights Issue 



Access to Pain Treatment and Palliative Care 

as a Human Right 

Lohman D. 1 

1 Human Rights Watch, Health and Human Rights 

Division, New York, NY, United States 

Issues: Millions of people living with cancer, HIV, 

and other health conditions suffer from moderate to 

severe pain and other debilitating symptoms. Pain 

undermines quality of life and, studies suggest, 

reduces treatment adherence. Opioid medications 

such as morphine are highly effective and relatively 

inexpensive but poorly available in most countries. 

Description: We surveyed healthcare workers in 40 

countries and conducted more than 200 semistructured 

interviews with healthcare workers, 

patients, and government officials in India, Kenya, 

and Ukraine to document barriers to pain treatment 

and palliative care. We analyzed governments’ 

obligations to address these barriers under 

international human rights law and the extent to 

which these obligations are being met. 

Lessons learned: Common barriers include, among 

others, poor integration of palliative care into health 

policies and programs, poor instruction for healthcare 

workers, complex and unnecessarily restrictive drug 

control regulations that complicate supply and 

prescription of controlled medications, and the 

elevated cost of medications in many countries. 

Under international human rights law, countries are 

obliged to take reasonable steps to overcome these 

barriers. Yet, many have failed to do so, in violation of 

the right to health and, in some cases, the prohibition 

of cruel, inhuman and degrading treatment. 

Next steps: Governments should integrate palliative 

care into health policies and programs, review drug 

control regulations to ensure that they do not 

unnecessarily impede access to pain medications, and 

ensure appropriate training for healthcare providers. 

International agencies responsible for drug policy 

should work with governments to ensure that drug 

control efforts do not unnecessarily impede access to 

pain medications. Donors should support countries to 

include palliative care as an integral part of health 

policies. Patients’ groups should explore ways to 

enforce the right to pain treatment through legal 

proceedings. 



Palliative Care as a Political Issue 

Finlay I. 1 , Wales 

1Cardiff University, Palliative Care, Cardiff, United 


Britain led the world in developing palliative care as a 

specialty, but the developments occurred in large part 

outside the National Health Service, with dependence 

on voluntary donations as the major funding source. 

This model of hospices has been picked up around the 

world, but with very variable support from 

Governments. All health care is political, but end of 

life care represents a major force in shaping the world 

today. 

Analgesics such as opioids are subject to such 

restrictions in prescribing in some countries that 

almost all the world’s opioid analgesic consumption 

occurs in the West, leaving 80% of the world’s 

population with almost no access to pain control. 

51% is consumed in the USA / Canada (5.3% of the 

world population) and 33% in Europe (12.2% of the 

world population). 

(David Joransen, WHO) 

Opium production for analgesic manufacture is in 

protected fields in the world. Illicit production by 

contrast fuels insurgencies, with smuggling schemes 

that rely on extortion, kidnapping and exploitation of 

both the initial producer and the end-point addictconsumer. 

This has been clearly evident in the poppy 

fields of Afghanistan where the Taliban obtain their 

resurgency funding. Thus the politics of illicit drug 

control are linked to military action as well as to 

perceptions by Governments of the dangers of 

allowing morphine prescribing. 

Funding of healthcare is a major political issue. The 

decision to fund palliative care can be considered a 

public health investment. As 90% of healthcare 

expenditure occurs in the last year of life, care of the 

dying has to be able to demonstrate it is cost effective 

as compared to other interventions, as well as to 

impact on quality of life. Data shows that those 

patients receiving palliative care input have shorter 

length of hospital stay, are less likely to be subjected to 

treatments that fail to achieve their therapeutic goal, 

are more likely to die in their own place of choosing, 

and report better symptom outcomes. 

Additionally opportunities arise for health promotion 

in those who are being bereaved - with messages 

around tobacco or alcohol abuse or risky sexual 

behaviour being particularly effective if the death is 

related to these. 

The costs to society of grief are often forgotten when 

the politics of palliative care are discussed. When 

prepared for a death and adequately supported, the 

bereaved show better outcomes; this is particularly 

important in children and young people as they are 

then less likely to exhibit disturbed behaviour in 

bereavement; they also have a lower risk of 

depression, suicide, teenage pregnancy, drug and 

alcohol addiction than those with complicated grief. 

Such data is particularly important in countries with 

high numbers of orphans, such as those with high 

HIV/AIDS death rates, where orphaned children risk 

being recruited into criminal or militia gangs. 

In many countries pressures to legalise 

euthanasia/PAS have arisen as political issues, not 

medical issues, yet clinicians have been left to 

administer both the process and the lethal 

prescriptions. 

In some nations doctors have been viewed as servants 

of the state. In others, medicine has spoken up against 

atrocities and human rights abuses, with some 

notable examples using political position to improve 

care of the dying. 

It is said that the mark of a civilised society is how it 

cares for its most vulnerable. The dying are vulnerable 

in all societies; the role of palliative care is to ensure 

governments see the benefit of investing in their care 

and in respecting the intrinsic value of each human so 

that those with severe life-limiting illness can 

continue to contribute to society. 



Balancing Priorities: Palliative Care vs. ART in 

HIV Care? 

Gwyther L. 1,2 

1 Hospice Palliative Care Association of South Africa, 

Cape Town, South Africa, 2 University of Cape Town, 

Family Medicine, Cape Town, South Africa 

The biomedical paradigm of Highly Active 

AntiRetroviral Treatment (HAART) as the cornerstone 

of treatment of HIV resulted in an artificial separation 

of disease-specific treatment and palliative care for 

people who are HIV positive. We need to recognise 

that HAART does not result in cure, but is, in fact, the 

most effective palliation available for HIV. 

Patients have significant symptom burden when they 

first present and are first diagnosed as HIV positive; 

and throughout the illness there will be a need for 

palliative interventions. 

This presentation refutes the assumption that patients 

should be offered either ART or palliative care and 

describes the ideal of providing both palliative care 

and HAART to ensure best possible outcomes for the 

person who is HIV positive and family members. The 

discussion will be presented through the lens of a 

human rights approach considering issues of 

availability, accessibility, acceptability and quality. 

Round Table: The EAPC 

Recommendations on Opioids in 




The EAPC Recommendations on Opioids in 


Caraceni A.T.G. 1 , Kaasa S. 2 , Hanks G.W. 3 

1 Fondazione IRCCS Istituto Nazionale dei Tumori, 

INT, Milan, Italy, 2 Norwegian University of Science 

and Technology (NTNU), Trondheim, Norway, 

3 University of Bristol, Bristol, United Kingdom 

The updated version of the EAPC recommendations 

for the use of opiods in the management of cancer 

pain has been developed as part of the EU funded 

project Europen Palliative Care Research 

Collaborative (2007-2009). The new version follows 

up and updates the 2011 version. The present 

recommendations were developed with a very 

rigourous methodology according to the GRADE 

system. Expert consensus was used to evaluate 

compare and update the guidelines content and 

identify specific key points to be addressed by 

systematic literature reviews (Pigni et al Minerva 

Anestesiologica 2010). 

From these key points 16 systematic literature reviews 

were structured and were assigned to different groups 

of researchers and experts from all Europe. Fifteen of 

the systematic reviews are in press as a special issue of 

Palliative Medicine journal and two more were 

submitted independently. 

The final text of the recommendations is submitted 

for the pubblication and a more extended version will 

be availabe online on the EPCRC website. 

The recommendations cover: 

- the use of opiods as II step of the WHO analgesic 

ladder 

- the first choice opiod for severe cancer pain (Step III 

of the ladder) 

- the role of transdermal opiods 

- the role of methadone 

- opiod titration 

- use of p.r.n opiods for breakthrough pain 

- alternative routes for opioid administration 

- switching opioids 

- opioid conversion ratio 

- control of nausea and vomiting 

- constipation 

- CNS side effects 


- the use of opioids in renal failure 

- the use of adjuvant medication in combination with 

opioids for neuropathic pain 

- the use of opioids in combination with NSAIDs and 

paracetamol 

- the use of spinal opioid administrations 

This version of the EAPC recommendations for the 

use of opiods in cancer pain managent can be viewed 

as a substantial improvement of the previous 

guideline and should be considered carefully in the 

panorama of available national and international 

guidelines. The very careful evaluation of the 

available scientific evidence highlights the need for 

more research in the field of opioid pharmacotherapy 

for cancer pain 



Parallel Symposium Round Table: The EAPC 

Recommendations on Opioids in Cancer Pain – 

Balancing Effect and Side Effect 

Stone P. 1 

1 St George’s University of London, Population Health 

Sciences and Education, London, United Kingdom 

The European Palliative Care Collaborative (EPCRC) 

on behalf of the European 

Association for Palliative Care (EAPC) have recently 

produced evidence-based guidelines for the use of 

opioid analgaesics in the treatment of cancer pain. 

The recommendations were produced as a result of a 

number of systematic reviews undertaken by a large 

collaboration of authors across Europe. Six of the key 

recommendations specifically relate to managing / 

preventing the side-effects of opioid therapy. 

1. Patients on step III opioids who do not achieve 

adequate analgesia and/or experience severe and 

unmanageable side effects may benefit from 

switching to an alternative opioid. 

2. In patients with opioid-induced emesis 

antidopaminergic drugs such as metoclopramide, and 

haloperidol are effective treatment options. 

3. Laxatives are recommended to manage opioidinduced 

constipation; there is no evidence to 

recommend one laxative agent in particular in favour 

of others. However a combination of drugs with 

different modes of action is likely to be more effective 

in resistant constipation than a single agent. 

4. Methylnaltrexone by subcutaneous injection may 

be effective in the treatment of opioid related 

constipation when it is resistant to treatment with 

laxatives. 

5. In patients with persistent significant opioid 

induced sedation methylphenidate can be used when 

other measures have failed. There is a narrow 

therapeutic window between desirable and 

undesirable effects. 

6. In patients with significant opioid neurotoxicity 

(delirium, hallucination myoclonus,hyperalgesia) 

opioid dose reduction or opioid switching should be 

considered. 

Reaching Out Towards Latin America 



Reaching out Collaboration between National 

and Regional Associations (SECPAL-ALCP) 

Rocafort Gil J. 1 

1 Laguna Hospital, Spanish Association for Palliative 

Care, Madrid, Spain 

Spanish Association for Palliative Care (SECPAL) 

began its activity from 1992, after a general meeting 

were Spanish palliative care promoters shared their 

knowledge after travelling across Europe and North 

America. 

During the same years, some people from Latin- 

American countries, specially from Argentina, 

developed the first units in their countries. 

One year later, in 1993, a new Journal called “medicina 

paliativa” (Spanish term for palliative medicine) was 

born. This journal and some events were the first 

experiences where Latin-American and Spanish 

professionals shared their knowledge. 

In 1998, SECPAL launched a new website. The Journal 

and the website are, from their foundation, the 

written and online references for Spanish speaking 

palliative care professionals around the World. 

By now, medicina paliativa (MP) is delivered to more 

than 2,000 professionals, and www.secpal.com has 

more than 12,000 registered users, which 30% came 

from American countries. 

Finally, more than 10% of originals published in MP 

are been written in Latin-America. 

So, is evident that Spanish and American 

professionals are been working together during years, 

and they have developed their palliative care systems 

sharing continuously their experiences. 

From 2001, following the creation of the Latin- 

American Association for Palliative care (ALCP), the 

relationship between Americans and SECPAL, 

previously informal, became more institutional. Since 

then three types of measures were established: 

Spanish palliativist participation in the ALCP 

congresses; free access to MP journal online, and 

professional exchange. 

At least four Spanish professionals participated in the 

ALCP congresses in Isla Margarita, Venezuela (2006), 

Lima, Peru (2008) and Buenos Aires, Argentina (2010). 

In all cases the ALCP proposed some profiles and 

SECPAL decided finaly the names and financed the 

trip. 

All members of ALCP properly registered enjoyed for 

years free access to MP journal online full text 

through SECPAL website. However, the success of this 

measure has been only moderate. 

Finally, during the last 12 months, four ALCP 

members travelled to Spain for clinical and 

organizational training in four selected palliative care 

units (University Hospital of Navarra, Palliative Care 

Program of Extremadura Health Service, Catalan 

Institute Oncology and CUDECA Foundation). All of 

them remained in Spain for several months with 

travel and accommodation funded by the 

International Association for Hospice and Palliative 

Care (IAHPC) and SECPAL. 

For the foreseeable future, new strategies of 

cooperation are being planned. Among them, the vast 

Latin American participation in the upcoming 

national SECPAL congress in Badajoz (in 2012), and 

the twinning program of palliative care units on both 

sides of the Atlantic Sea. 



Reaching Out: The Collaboration between 

Associations (IAHPC-ALCP-SECPAL) 

De Lima L. 1 

1 International Association for Hospice and Palliative 

Care (IAHPC), Houston, TX, United States 

For several years, the International Association for 

Hospice and Palliative Care (IAHPC), the Latin 

American Association for Palliative Care (ALCP) and 

the Sociedad Española de Cuidados Paliativos 

(SECPAL) have been collaborating together to identify 

and implement strategies to advance palliative care in 

Latin America. This section of this session will present 

these strategies and review some of the outcomes and 

results. 



Reaching Out towards Latin America – Brazil 

and Portugal: How To Start? 

Rodrigues L.F. 1 

1 Hospital de Câncer de Londrina, Equipe de Cuidados 

Paliativos, Londrina, Brazil 

In my speech I’ll try to present some aspects of my 

country related to geographics and culture, and after, 

something about the creations and development of 

the National Academy of Palliative Care. By this, I 

hope to start the relationship with Portugal, as the 

title of the session sugests. Talking about my country 

is already a manner to initiate this approach. Brasil is 

the 5th country in area and the 4th if we consider 

continuos land. We are know as the barn of the world 

becaus the large extensions of cultivable lands. Our 

Nationa Association (ANCP) was founde in February 

of 2005 and in October of 2010 we made the 4th 

National Congress. In March of 2011, we will sediate 

the VI Latin America Congress of Palliative Care, 

together with ALCP and the other Brazilian 

Association - ABCP. 





Collaboration in Practice: The Palliative Care 

Atlas for Latin America 

Eisenchlas J. 1 

1 Asociacion Latinoamericana de Cuidados Paliativos - 

Continuum Home Care BA, Buenos Aires, Argentina 

Meanwhile the incidence of cancer and HIV/AIDS is 

increasing in many developing countries, likewise the 

majority of countries in Latin America, in the region 

there is a lack of global policies aimed to develop good 

palliative care initiatives. Furthermore, the absence of 

reliable data concerned with the development of 

palliative care in each country of the region 

contribute to the low awareness given to issues related 

to end of life care. 

In this context, there is an urgent need to capture 

evidence based data which could be useful to know 

where we are, what are we doing, what are our 

streghts, debilities, challenges and barriers, as well as 

to plan how to overcome those. Construction of a 

palliative care Atlas and spreading of that across Latin 

America (LA) could contribute to discover where PC in 

LA is placed, what we should do as well as to raise 

awareness and open the debate concerning palliative 

care as an human right. 

The main body representing palliative care in LA is 

ALCP (Asociación Latinoamericana de Cuidados 

Paliativos). ALCP mission is to promote the 

development of palliative care in the region through 

communication and integration of all those 

interested in improving the quality of life of patients 

with progressive, life limiting conditions and their 

families. 

One of the essential concerns of our organization has 

been to build up a regional database able to inform 

the palliative care activity at country level. A process 

of data collection aimed to identify regional providers 

and contact information started in 2006. Although it 

produced some useful information, that information 

has not been systematically collected. 

Thorugh a grant from OSI we have started the 

building up a Palliative Care Atlas for 

America Latina. Methodology design was 

created with the advice of professionals from 

SECPAL and University of Navarra (Spain) 

who had already worked in the EAPC Atlas 

and who will coninue giving their advice 

during the study running period. 

We think that an accessible database containing 

systematically collected information concerning the 

current provision and practice of hospice and PC in 

LA is of paramount importance. It could potentially 

help not only PC related workers but also, it could 

“inspire” policy makers, be a guide to patients and 

families and create a milestone in front of which 

compare PC development in the future. During the 

session there will be place to discuss research 

methodology of the study, expected outcomes, 

potential difficulties and how to deal with that 

Breathlessness 



Management of Breathlessness in Advanced 

Disease – Have We Got Any Further? 

Higginson I.J. 1,2 


Department of Palliative Care, Policy and 

Rehabilitation, London, United Kingdom, 2 Cicely 

Saunders International, London, United Kingdom 

Breathlessness is a common, distressing symptom in 

advanced malignant and non-malignant disease 

being found in almost all patients with COPD, 70+% 

of those with cancer and over 50% of those with heart 

failure. It impacts significantly on quality of life and is 

responsible for significant healthcare resource usage. 

Escalante (1996) reported hospital admission rates of 

60% in patients presenting to a cancer treatment 

centre with breathlessness. 

The aetiology of breathlessness is multifactorial, and 

so a multidisciplinary approach is required if all 

physiological, psychological, social and cultural 

factors are to be recognised and managed 

appropriately. There are two areas of important 

development which are considered in this 

presentation which contribute to management: 

1. Developments in understanding the nature, course 

and assessment of breathlessness, so that the 

33 

Parallel sessions



symptom can be detected and appropriately 

managed. This includes new understandings of the 

trajectory of breathlessness in cancer and non cancer 

conditions, the social course of breathlessness in 

different conditions, information on episodic 

breathlessness and improved methods of assessment. 

2. Developments in management, pharmacological, 

non-pharmacological and complex interventions. 

This includes evidence regarding the use of oxygen or 

air, benzodiazepine, opioids, and nonpharmacological 

treatments, in particular pulmonary 

rehabilitation, exercise, the hand held fan and 

combination services such as breathlessness support 

or intervention services. 

Key references: 

Palliat Med. 2010 Dec;24(8):777-86. Epub 2010 Sep 

16. 

Palliat Support Care. 2010 Jun;8(2):143-9. Epub 2010 

Mar 23 

J Pain Symptom Manage. 2010 Mar;39(3):555-63. 

Expert Rev Respir Med. 2009 Feb;3(1):21-36. 

Cochrane Database Syst Rev. 2010 Jan 

20;(1):CD007354 

Cochrane Database Syst Rev. 2008 Apr 

16;(2):CD005623. 



Palliative Care of COPD: More Intractable 

Breathlessness than End of Life 

White P.T. 1 

1 King’s College London, Primary Care and Public 

Health Sciences, London, United Kingdom 

Much attention is currently paid to the end of life care 

of non-malignant disease. This is because of the 

perceived lack of awareness of the needs of people 

who die from chronic diseases other than cancer. In 

COPD emphasis has been put on the severity of 

symptoms suffered by people with advanced COPD 

when compared to people with advanced cancer. In 

COPD such people receive little palliative care support 

in the year before death and there has been much 

concern that their needs have been neglected. 

Is it the case that many people with advanced COPD 

have end of life care needs comparable to people 

dying from cancer? Many experts have written that 

people with advanced COPD lose out when it comes 

to end of life care. They have also said that it is 

possible with the tools at our disposal to identify 

those who have such needs. Such assertions reflect a 

deep concern for people with advanced COPD. They 

may arise from personal experience. Are they well 

supported by evidence? 

In this talk the evidence for palliative care needs in 

advanced COPD will be reviewed. A distinction will 

be drawn between palliative care and end of life care 

in advanced COPD, and a new way of thinking about 

advanced COPD will be proposed. People with 

advanced COPD invariably have had severe 

symptoms due to the disease for years. In this respect 

they differ from people with advanced cancer who 

may have had severe breathlessness for days or at 

most weeks. There is a great difference between cancer 

and COPD in the context in which symptoms are 

experienced. It seems inevitable that the needs of 

these two groups will be very different when the 

disease is advanced. 

The priority of symptom palliation in non-malignant 

disease will be considered against the tendency many 

clinicians have of fusing palliative care with end of life 

care. Breathlessness in advanced cancer is usually a 

harbinger of death. Breathlessness in advanced COPD 

can become intractable but it can also take on an 

everyday familiarity to which patients can become 

accostomed. In the process it can be hard for 

clinicians to recognise symptoms that need palliation 

when patients are living with their disease rather than 

dying from it. 



The Role of Physiotherapy in Breathlessness 

Simader R. 1 , Taylor J. 2 , Allied Health Professions 

department St Christophers Hospice London, UK 

1 Elsevier Publisher, Munich, Germany, 2 St 

Christophers Hospice, London, United Kingdom 

Breathlessness is a very common symptom in 

terminally ill patients and is known to be strongly 

affected by emotional or social influences and also has 

a huge impact on psychological well being and 

quality of life of patients and their carers. 

Breathlessness is often combined with anxiety, panic 

and the experience of “losing control”. On the one 

hand physiotherapy can reduce symptoms with 

certain interventions but can also enable and help 

patients to find and get back physical control within 

the realistic framework of the disease. Due to this 

active and enabling approach patients with 

breathlessness can improve both the symptom and 

their potential. Key interventions of the 

physiotherapist after a mandatory first one - to one 

assessment are 

To educate patients /carers on basic anatomy and 

breathing physiology 

To use breathing - out and other breathing control 

techniques at rest but also on exertion 

To try out and teach pacing strategies for activities of 

daily life 

To address the importance of exercising 

Chest clearance techniques if appropriate 

To assess and provide (walking-) aids 

To address and work out management strategies for 

anxiety and panic 

To build strength and stamina affected by physical 

and psychological factors (if 

appropriate) 

Patients who experienced breathlessness often tend to 

continue with a “fear - avoidance - behavior” as the 

only possible coping strategy without insight to 

realistic goals and abilities. The management of 

breathlessness needs a good rapport with patients and 

it is recommended that input starts in one-to-one 

clinics. But also “breathlessness - classes” with the 

patients (seen as experts within these groups) can 

have a hugely positive influence. There is evidence 

that active and empowering physiotherapy 

intervention in breathless palliative care patients has 

a very positive impact on mobility, independence, 

well being and quality of life. 

Reaching Out Towards Oncology 



Barriers to Diffusion of Palliative Care into 

Oncology Practice 

Cherny N.I. 1 

1 Shaare Zedek Medical Center, Oncology and 

Palliative Care, Jerusalem, Israel 

The diffusion of innovations relates to the rate of 

adoption of a new idea or behavior, treatment or care 

modality among potential adopters. Diffusion of 

innovation has been widely studied. Among the 

factors that may influence the diffusion of any new 

innovation are the perceived attributes of the 

innovation (intrinsic factors), and extrinsic factors 

including the type of innovation decision (optional, 

collective or authoritative), the communication 

channels used to promote the innovation, the social 

system of the potential adopters and the extent of the 

change agents promotion efforts. 

Despite the major developments in the care of 

patients with incurable illness, the compelling 

evidence base and the publication of guidelines, 

uptake of palliative care by oncologists, oncology 

departments and cancer centers has been slow. Few 

oncology departments or cancer centers have fully 

integrated, high level palliative care services. Many 

oncologists provide an ad-hoc level of palliative care 

that is far removed from nationally and 

internationally recommended standards of practice. 

The reasons for this are complex. It is not because this 

is a new innovation. There is nothing new about 

Palliative care or the widely acknowledged standards 

of palliative care. It is not that oncologists are 

intrinsically slow to adopt new innovation in care. On 

the contrary, the diffusion of new oncologic 

interventions is remarkably rapid. Many are widely 

adopted within a short time of publication, and in 

many cases there is even a problem of over adoption 

ahead of validating data or for indications beyond 

those for which there is evidence of efficacy. 

In this presentation I will review the intrinsic and 

extrisnic reasons why the diffusion of high quality 

palliative care practices into the routine practices of 

oncologists and cancer treatment centers is 

challenging and appoiaches to policy and innitiatives 

that have been developed to help ovecome these 

diffusion barriers. 



Parallel Symposium: Reaching out towards 

Oncology – Decision Making Based on 

Symptoms 

Stone P. 1 

1 St George’s University of London, Population Health 

Science and Education, London, United Kingdom 

Making clinical decisions on the basis of symptoms is 

a core feature of palliative care specialist practice. In 

oncology practice it is more common for clinical 

decisions to be guided by underlying disease processes 

(e.g. histology, grade and stage of tumour, and 

anticipated effects on tumour burden). Adopting a 

symptom-oriented approach does not mean that one 

should suspend basic diagnostic or investigative skills. 

It is still important for the clinician to base 

management decisions on a sound understanding of 

the underlying pathology. However, when the goal is 

orientated towards symptom relief rather than disease 

control this has important implications for the type of 

assessments that are required before embarking on 

treatment and on the nature of the outcomes by 

which treatment success will be judged. It is also 

important for patients to understand and to be 

involved in decison making before embarking on 

palliative oncology treatments. 

In this presentation the author will explore the 

different ways in which “palliative” treatments are 

understood by oncologists, palliative care specialists 

and patients. Is palliative treatment simply another 

way of describing “non-curative” treatment? Does it 

refer to treatments that are focused on disease control 

(partial response and/or stable disease)? Or is the 

purpose of palliative treatments to treat or prevent the 

development of disease-related symptoms? The 

author will explore the nature of “clinical benefit” in 

the context of palliative oncology treatments and the 

importance of undertaking appropriate standardised 

assessments of clinical response when the therapy is 

symptom-, rather than disease-orientated. 



Evidence-Based Decision Making 

Bruera E. 1 

1 UT M. D. Anderson Cancer Center, Palliataive Care & 

Rehabilitation Medicine, Houston, TX, United States 

Interdisciplinary teams led by palliative medicine 

specialists are quite effective in reducing physical and 

psychosocial distress, length of hospital stay and 

overall bed utilization, intensive care unit admissions 

and mortality, and the overall cost of care. In 

addition, preliminary evidence suggests that early 

access to palliative care can extend patient survival. 

However, the percentage and timing of access of 

patients to palliative care teams is quite variable. This 

presentation will review the evidence on the impact 

of different clinical and demographic variables on 

decision making by patients and referring physicians 

regarding palliative care access. The wide variation on 

structures, processes, and outcomes assessment makes 

the generation of evidence and the dissemination of 

such evidence very difficult. Areas for future research 

on how to improve evidence-based decision making 

will be discussed. 

Suffering and Spiritual Care 



Compassion: The Essence of Hospice and 


Larkin P.J. 1 

1 University College Dublin, School of Nursing, 

Midwifery & Health Systems, Dublin, Ireland 

Most practitioners would consider compassion a core 

concept in the delivery of hospice and palliative care. 

Compassion has received increased attention in wider 

healthcare literature, particularly in the failure of 

healthcare services to integrate compassion into its 

service delivery ( Youngson 1992). However, in 

hospice and palliative care, the meaning of 

compassion in practice is rarely debated. Descriptions 

of compassion in current hospice & palliative care 

literature often reflect Buddhist perspectives with 


limited, if any reference to its Christian origins and in 

particular the vision of Cicely Saunders in her early 

conceptions of how palliative care should be 

developed. Much of the work of religious houses such 

as the Irish Sisters of Charity and The Grey Nuns in 

Canada ( both synonymous with the development of 

care for the dying) reflects a mission to the 

communities they serve in terms of reaching out in a 

compassionate way. A deeper understanding of this 

mission may help to inform current understanding of 

compassion as the essence of hospice and palliative 

care. From an historical, theological and 

philosophical perspective, this presentation will 

debate contemporary interpretations of compassion 

and consider the possible challenges which exist in 

current palliative care practice which may mitigate 

against compassion caregiving. The idea of 

ćompassion as action´ ( Nouwen et al 1982, Fox 1992) 

will be presented as an exemplar of palliative care´s 

response to the needs of patients and families at end 

of life. A clearer understanding of this in practice can 

help formulate responses to the complex questions 

which arise in daily palliative care practice will also be 

discussed. 



How Do We Respond to Spiritual Suffering? 

Benito E. 1 

1 GESMA, Palliative Care Unit, Calvia, Spain 

Relationship with patients is the vehicle for alleviate 

suffering, as a professionals, we also need some 

schedule of the possible ways to solve, overcome or 

integrate the suffering experience in order to guide 

our patients. 

Starting defining suffering as “threatening to the 

integrity of the personhood “the possible way to solve 

suffering are two: 

1/ Solve and make disappear the threatening or 

2/ Give a new dimension of the concept of 

personhood that would not be affected by the 

threatening, that would mean to transcend our 

narrow vision of what we though, that we are (our 

ego), and found a meaning allowing for a new deeper 

vision of our self and transcend the threatening 

trough a personal growth, called healing process. The 

way how this transcendence occurs has been 

described by Kathleen D. Singh and the model that 

she suggested to explain the process of dying can be 

applied to the suffering. 

The phases are “Chaos”- “Surrender”- and 

“Transcendence” 

In some case the suffering may be solved by: 

a) Identifying the suffering, its causes: bad symptom 

control, being a burden for the family, feel tired of 

living in this situation without hope of improving.. 

b) Giving solutions for each of this causes of the 

threaten 

This is the easy way of solving the problem of 

suffering: to solve threaten. 

The second possibility that need to be applied when 

this threaten cannot be avoided is to change the 

personal view of the self, to take advantage of 

suffering to penetrate deep insight and found a new 

meaning a new SELF. 

This process is possible towards the surrender to the 

old vision of what is supposed to be threatening, and 

to be open to the transcendence. 

There is therapeutic power in being present to 

suffering. 

Staying engaged helps reduce suffering by allowing 

the ill and their families to share their suffering, 

thereby addressing their fears of isolation and 

abandonment. Staying engaged means sharing the 

patient’s and family’s experience, not being a 

detached problem solver. It requires becoming 

comfortable with silence, something with which 

professionals, taught to be instrumental and in 

control, often struggle. 

The professional work in this case must try to suggest 

the direction were the patient have to make his 

research, and at the same time in which he or she is 

being close companion of the process, by having an 

emphatic connexion and sharing the narrative of the 

process, give the message of compassion: “you are not 

alone in this process and your feeling of separateness 

is a dream from which you must awake and found 

your wholeness as a person”. 

“You are more than you suspect, you have more to 

learn from yourself that you have ever discovered 

before, and meanwhile your body and your physical 

strength is each time weaker, your inner life, your 

deep self is going to be each time more and more 

alive”. 

The compassion is the conscience of a deep union 

between you and other beings. They are two aspects of 

compassion, this dual aspect is the conscience of 

sharing with every human being our both conditions: 

mortal and immortal. 

When you, as a person have the lived experience of 

loosing your “I”, or when your life experience allows 

you to accept your mortality without fear, or at least 

your love for your patients is biggest than your fear to 

die, then you can go together with the patient 

through the sadness of having to dye, and found the 

happiness of sharing a deeper dimension which is 

immortal; at this deepest level, compassion could be a 

healer. At this stage, the influence of the professional 

is based mainly in his or her being. The wholeness of 

the person that you are, in touch with the patient 

could change him. Your presence and your inner 

peace could change his perception of himself, being 

you conscientious or not of this effect. 

If we agree on this vision of healing we have to 

recognize that what can help the patient and its 

process could be the level of awakening of the 

professional. 



Clinical Responses to Suffering in Palliative 

Care Practice 

Hegarty M. 1 


Services, Adelaide, Australia 

Suffering, in particular refractory suffering, of patients 

and their families impacts on clinicians. It challenges 

our compassion and sometimes our sense of 

professional identity. Rigorous, evidence-based 

training in relieving pain and other symptoms alone 

does not equip us adequately for meeting the needs of 

a suffering person. Clinical responses to suffering 

require a complementary approach, balancing 

ongoing assessment and management of symptoms 

of the suffering as far as is possible, with a skilled and 

sensitive use of presence: a staying with, in a 

conscious, accepting way, the person’s experience of 

suffering and a willingness and capacity to work with 

them and their suffering. Key are an ability to work 

with distress and uncertainty, an awareness of how 

one’s own philosophy regarding suffering affects 

one’s practice, and strategies to nurture and support 

one’s own spirit, as well as that of the sufferer. 

This presentation will explore this clinical approach 

and the capacities (including personal strengths, 

skills, knowledge, understandings, and attitudes) 

needed by individuals, teams and organisations to 

avoid the well documented dangers of avoidance, 

over-involvement, “compassion fatigue’ and team 

fracturing. 

The presentation will incorporate findings of an 

Australian study, which investigated the experiences 

and perceptions of experienced palliative care 

multidisciplinary clinicians. 

Presentation of Highlights 

of EU Projects 



Access to Opioid Medication in Europe 

(ATOME) 

Jünger S. 1 , Scholten W. 2 , Payne S. 3 , Radbruch L. 4,5 

1 RWTH Aachen University, Department of Palliative 

Medicine, Aachen, Germany, 2 World Health 

Organization, Team Leader, Access to Controlled 

Medicines, Geneva, Switzerland, 3 Lancaster 

University, Division of Health Research, International 

Observatory on End of Life Care, Lancaster, United 

Kingdom, 4 University of Bonn, Department of 

Palliative Medicine, Bonn, Germany, 5 Malteser 

Hospital Bonn/ Rhein-Sieg, Centre for Palliative 

Medicine, Bonn, Germany 

ATOME (Access to Opioid Medication in Europe) is an 

EU-funded project with the overall goal to improve 

the availability of opioids for moderate to severe pain 

and for the treatment of opioid dependence in twelve 

countries in Eastern and South Europe. Applied 

research is being undertaken into the reasons why 

opioid medicines are often not available where 

needed and not used adequately in these countries. 

Based on the results, tailor-made recommendations 

will be elaborated for each country in collaboration 

with national country teams. These 



recommendations will be presented to the national 

governments, to health-care professionals, other key 

decision-making bodies as well as to the general 

public in each country with the aim of improving the 

accessibility, availability and affordability of 

controlled medicines. 

The project started in December 2009. The ATOME 

consortium comprises ten organisations from eight 

different European countries, among which the 

World Health Organization and the European 

Association for Palliative Care. Two tracks of activities 

in different work packages will ensure a systematic 

approach to the project objective. One track focuses 

on a national legislation analysis for the identification 

of potential barriers to opioid availability. Lawyers 

from each target country will be trained in legislation 

analysis in order identify law texts hampering the 

availability of controlled medicines. Based on their 

findings, legal experts will undertake a systematic 

analysis of the legislation in the target countries in 

collaboration with the lawyers. The other track aims 

at assessing obstacles to opioid availability on the 

level of health policy and education of health 

professionals. Country teams will analyse the national 

situation with a self-assessment checklist and 

elaborate recommendations during six-country 

workshops. The results of the national situation 

analysis will be disseminated during national followup 

conferences in each target country. 



European Palliative Care Research 

Collaborative (EPCRC) 

Kaasa S. 1,2 , Faksvåg Haugen D. 1,3 





Trondheim, Norway, 3 Haukeland University Hospital, 

Regional Centre of Excellence for Palliative Care, 

Western Norway, Bergen, Norway 

The EPCRC (2006-2010) was the first major palliative 

care project within the Framework of the EU. The 

project engaged 60 co-workers of 11 centers in six 

European countries. The EPCRC addressed three 

symptom areas: pain, depression and cachexia, 

focusing on genetics, assessment/classification and 

the development of guidelines. 

A genetic marker set with 17 SNP’s involved in 

response the opioids were identified. Three groups of 

genes have shown to be associated with at least one 

cachexia phenotype, and bio markers for pain 

perception indicate that there is a significant 

relationship between biomarker changes and pain 

preception. A new definition and classification system 

for cancer cachexia has been developed and 

supported by major stakeholders. Results from a series 

of empirical studies and systematic review have led to 

a set of recommendations for future work on pain 

assessment and classification, including a proposed 

classification system cancer pain. A total set of items 

for the diagnosis of depression in palliative care has 

been identified, and a first version a computerized 

assessment tool for depression has been developed. 

European guidelines for the management of 

depression and cachexia have been developed, and an 

updated recommendation on opioid treatment for 

cancer pain based upon 22 systematic reviews, are 

finalized. 

The European Palliative Care Research Centre (PRC) 

has been established as a direct continuation of the 

EPCRC to promote palliative care research, conduct 

multicentre studies and train researchers. 

By the end of the project, 43 papers were published, 

seven papers were in press and a substantial number 

of papers are in draft format. 



PRISMA, a Pan-European EC Co-ordinating 

Action: Reflecting the Positive Diversities of 

European Priorities for Research and 

Measurement in End-of-Life Care 

Harding R. 1 , Higginson I.J. 1 , Daveson B. 1 , On behalf of 

PRISMA 


London, United Kingdom 

Background: In order to deliver highest quality, 

approriate end-of-life care for European citizens, it is 

esential to ensure that care is measured using tools 

35 

Parallel sessions



that offer highest scientific priciples and reflect the 

concerns of patients, families and clincians. PRISMA 

aimed to establish a new platform of pan-European 

interdisciplinary experts to deliver harmonised, 

robust approaches to measuring care at the end-oflife. 

Methods: This EC-funded co-ordinating action has 

drawn together experts from 11 European partners in 

8 countries plus African colleagues. Its work packages 

(WPs) have each performed a set of activities that 

integrate to deliver PRISMA´s measurement aim. 

Results: WP1, led by a group of anthropologists, has 

undertaken essential groundwork to establish a 

network of experts in end-of-life care and 

systematically reviewed the cultural literature. This 

core underpinning of an understanding of culture has 

revealed the meanings of culture in end-of-life 

particulary with reference to minority ethnic groups. 

WP2 has undertaken a large scale public survey in 7 

European countries, and has discovered in its sample 

of nearly 10,000 citizens that experience of serious 

illness and death in their family were very common, 

and while home death was commonly preferred, 

there are wide variations across Europe. 

WP3 has undertaken a Europe-wide survey of medical 

priorities for research, and found that clinicains need 

common tools, and prioritise pain, fatigue, cachexia, 

delirium, and breathlessness. 

WP4 has conducted a pan-European survey of 

researchers and clinicians, and found nearly 200 tools 

in use, with nearly 100 tools only used in one group. 

WP5 has consulted with clinicians on the preferred 

format of outcome tools and resources, and produced 

a simple-to-use POS booklet and score card that can be 

carried in routine care. 

WP6 has established an expert network of researchers 

working in long-term care settings, and identified a 

ack of common methods and measures in this 

population. 

WP7 has integrated these Work Packages, and WP8 is 

hosting a policy-oriented symposium to disseminate 

findings in Brussels. 

Discussion: PRISMA has established essential new 

knowledge to drive forward harmonised 

measurement at the end of life. It has provided a pan- 

European platform with expert guidance and 

evidence that is freely available to those who deliver, 

measure and receive end-of-life care. The PRISMA 

project, its measurement activity, and expert network 

continues and is hosted at the Cicely Saunders 

Institute. 



OPCARE9 - An International Collaborative to 

Optimise Research for the Care of Cancer 

Patients in the Last Days of Life 

Ellershaw J.E. 1 

1 Marie Curie Palliative Care institute Liverpool, 

Palliative Care, Liverpool, United Kingdom 

OPCARE9 is an European Union 7 th Framework 

funded Co-ordination and Support Action project to 

optimise research for the care of cancer patients in the 

last days of life. Through collaboratively and 

systematically investigating current practice across a 

range of healthcare environments and diverse 

cultures, the nine country international collaborative 

(Table 1) seeks to establish consensus based 

agreements on optimum care to be delivered at this 

critical stage of the patients’ journey. 

Beneficiary Country 

Marie Curie Palliative Care Institute, United 

University of Liverpool Kingdom 

Cologne University Hospital Germany 

Erasmus MC, University of Rotterdam Netherlands 

National Cancer Research Institute, Genoa Italy 

Stockholms Sjukhem Foundation Sweden 

Palliative Care Development Slovenia 

Institute, Golnik 

Cantonal Hospital, St Gallen Switzerland 

Pallium Latinoamerica, Buenos Aires Argentina 

Arohanui Hospice, North Palmerston New Zealand 

[Table 1 OPCARE9 Beneficiaries] 

OPCARE9 consolidates and further develops an 

established collaboration around a specific 

programme to improve care in the last days of life - 

the Liverpool Care Pathway for the Dying Pathway 

(LCP). Specifically, the OPCARE9 collaborative 

integrates knowledge and cultural diversity across 

nine partner countries, explored through five primary 

themed work packages 

WP1 Signs and Symptoms of approaching death 

WP2 End of Life Decisions 

WP3 Complementary comfort care 

WP4 Psychological and Psychosocial support to 

patients, families and caretakers 

WP5 Voluntary Service 

and two executive work packages 

WP6 Management, Communication & 

Dissemination 

WP7a Evaluation; WP7b Liverpool Care Pathway 

International) 

OPCARE9 aims to impact positively on future 

research agenda’s through the development of novel 

methodologies to address existing gaps within the 

evidence base. Apt local, national and international 

research protocols, amenable to funding, are a key 

output of this project. Further resources which will be 

available to the wider healthcare environment and 

international research community include: 

The results of systematic reviews and Delphi processes 

for each primary work package 

A list of evaluated tools and technologies in current 

use across the nine participating countries 

A list of European Quality Indicators against which to 

measure future care in the last days of life 

Other primary outcomes will include published 

articles and conference presentations detailing project 

results and recommendations on the future 

development of the LCP framework at an 

international level. 

The collaborative structure of OPCARE9 provides a 

rich and dynamic interface for health care providers, 

educators and researchers within the field of palliative 

care; collaborations, such as OPCARE9, are an 

efficient way of organising people and resources to 

provide mechanisms to share information, tap new 

knowledge sets and increase opportunities for 

creating new approaches that may not be possible 

from working alone. Despite the challenges of coordinating 

workpackages with representation from 9 

countries, members of OPCARE9 view the 

collaborative as built on robust, replicable 

organisational principles that have established an 

integrated research community to advance care for 

cancer patients in the last days of life.[1] Project 

Coordinator 



Best Practice in Palliative Care: Highlights of 

the EU Project 

Vissers K.C. 1 , Engels Y. 1 , Hasselaar J. 1 , Ahmedzai S. 2 , 

Goméz-Batiste X. 3 , Jaspers B. 4 , Leppert W. 5 , Menten J. 6 , 

Mollard J.-M. 7 

1 University Medical Center St. Radboud Nijmegen, 

Dept of Anaesthesiology, Pain and Palliative 

Medicine, Nijmegen Route, Netherlands, 2 The 

University of Sheffield, Academic Unit of Supportive 

Care, School of Medicine, Sheffield, United Kingdom, 

3 WHO Collaborating Centre for Public Health 

Palliative Care Programmes, Barcelona, Spain, 

4 University of Bonn, Bonn, Germany, 5 Poznan 

University of Medical Sciences, Poznan, Poland, 

6 University Hospital Leuven, Leuven, Belgium, 

7 Palliative Network, Paris, France 

The WHO definition of palliative care launched in 

2002 broadens the target population to all patients 

with an incurable disease. Moreover palliative care 

should be applicable early in the course of the illness. 

For politicians, caregivers and policy makers it is 

important to find tools to measure the quality of the 

organization of palliative care. For this purpose 

consensus was sought on quality indicators, which are 

‘explicitly defined and measurable items referring to 

the outcomes, processes or structure of care’ 

A systematic review on quality indicators for palliative 

care showed that clinical indicators are widely 

overrepresented over indicators that assess 

organizational issues. 

During workshops it was agreed that the organization 

of palliative care can be defined as follows: “systems 

(structures and processes) meant to enable the delivery 

of good quality palliative care. The quality of the 

organization of palliative care could be assessed in a 

framework with the domains of: 1 Definition of 

palliative care service; 2 Access to palliative care (a. 

access and availability, b. out of hours care, c. 

continuity of care); 3. Infrastructure; 4. Assessment 

tools; 5 Personnel (a. staff, b. education and training 

for staff/volunteers, c. support systems, d. organization 

of care, e. sharing information); 6. Documentation of 

clinical data (a. clinical record, b. timely 

documentation); 7. Quality and safety ( a. quality 

policies, b. adverse events, c. complaints procedures); 

8. Reporting clinical activity of palliative care services; 

9. Regional, national and international aspects of 

palliative care (a. national policy, b. guidelines, c. 

health/insurance program, d. networks); 10. Research 

(a. Local level, b. national level) and 11 Education. 

Transmural multidisciplinary teams of caregivers were 

invited to participate in the generation of a consensus 

on the usefulness and clarity of the proposed 

indicators. After two rounds of consultation using a 

modified Rand Delphi method in the top 10 indicators 

with the highest median rating, there are 3 indicators 

relative to education, 2 are personnel related, 2 deal 

with the accessibility, 1 is infrastructure related and 

two others are in the domain of national indicators. 

No single indicator from the domain “Quality and 

safety” was considered essential for the quality of the 

organization of palliative care. 

It is judged important to have a home support team as 

well as hospice beds. Access to palliative care facilities 

and the possibility to consult or be visited by the 

caregiver 24 hours a day, and timely transfer of the 

patient and the clinical information are important 

quality indicators; 

There was consensus on the need for a 

multidisciplinary team and appropriate training for 

staff and volunteers. Validated instruments to assess 

pain and other symptoms should be in place. A 

structured clinical record adds to the quality. It was 

agreed that the use of a database for recording clinical 

activity is important, but no consensus on its content 

was reached. 

Also on local level the availability of a research 

program and the structural governmental funding are 

judged important quality indicators 

The infrastructure should allow privacy of patients 

and families, including the possibility to die in a 

single bedroom, facilities for relatives to stay 

overnight, the ability of a private place for saying 

good-bye to the deceased and no restrictions of 

visiting hours. 

Standardized learning objectives for basic and 

continuing training, as well as a program for 

specialized training for professionals working in 

palliative care were considered important. 

On regional and national level the recognition, 

awareness and support of palliative medicine as 

illustrated by associations, policies networks and 

regulations regarding the availability of palliative care 

improve the quality. 

These indicators can be a first step towards improving 

the quality of the organization of palliative care in 

Europe. 



EURO-IMPACT: a 4-year EU 7 th FP Marie Curie 

Initial Training Network in Palliative Care 

Research 

Deliens L. 1 , Van den Block L. 1 

1 Vrije Universiteit Brussel, End-of-Life Care Research 

Group, Brussels, Belgium 

EURO IMPACT is a EU 7 th FP Marie Curie Initial 

Training Network in Palliative Care Research aiming 

to develop a multi-disciplinary, multi-professional 

and intersectorial educational and research training 

network aimed at monitoring and improving 

palliative care in Europe. While international research 

on palliative care has begun to develop over the past 

decades, it has not kept pace with the growing 

demand for high quality care. The increase in elderly 

people, chronic diseases and health care costs, makes 

the provision of enhanced research training in 

palliative care one of the most urgent societal 

challenges at EU level. 

EURO IMPACT is coordinated by prof Luc Deliens and 

Prof Lieve Van den Block in Brussels, Belgium, with 

involvement of 9 partners in 6 different countries: the 

End-of-Life Care Research Group of Ghent University 

and the Vrije Universiteit Brussel in Brussels, Belgium 

(coordinator); the VU University medical center and 

EMGO Institute for Health and Care Research in 

Amsterdam, The Netherlands; King’s College London 

UK, Norwegian University of Science and Technology 

of Trondheim, National Cancer Research Institute of 

Genoa in Italy, the International Observatory on End 

of Life Care of Lancaster University UK, European 

Association of Palliative Care - Research Network, 

European Union Geriatric Medicine Society, Springer 

Science and Business Media, and Cicely Saunders 

International in London UK. 

The training and research programme of EURO 

IMPACT are closely intertwined, involving 5 

universities, 2 private companies and 3 socioeconomic 

actors, and training 12 early stage and 4 

experienced researchers. The partners are at the 

forefront of palliative research training and represent 

a wide spectrum of disciplines and professions. The 

research training involves researchers working 


together, with different methodologies and datasets 

gathered in different countries and from multiple 

perspectives. It will provide a broad overview on 

palliative care and its quality in Europe and identify 

tools to improve it. On-the-job training will be 

supplemented with structured courses concerning 

palliative care research and network-wide training on 

multi-disciplinary, ethics, cross-national research and 

societal dissemination. In order to influence policy 

and clinical practice in palliative care, all partners and 

researchers are involved in societal dissemination of 

the training results to a wider national and 

international audience. 

EURO IMPACT reduces current fragmentation of 

research training in palliative care and provides the 

new generation of European researchers with the 

necessary scientific and complementary skills to 

influence future palliative care at national and 

international level, and at practice and policy level. 

How to Involve the Health 

Authorities and the Politicians? 



How to Involve Health Authorities 

Wodarg W. 1 

1 University of Flensburg, Berlin, Germany 

According to the variety of levels and sectors of 

accountability for palliative care (PC), many different 

approaches are necessary to make PC an integral and 

well functioning part of national and regional health 

systems in Europe. Derived from international human 

rights and based on a holistic concept of human 

dignity, the 47 states of the Council of Europe 

continue to fight for the principles of PC, proposed in 

the Recommendation Rec (2003) 24 of the 

Committee of Ministers to member states on the 

“organisation of palliative care”. 

Although states have committed themselves to 

implement the agreed principles, we still have to 

monitor this process in all member states. 

Caring for the weakest is a core task of political 

systems at all levels. We have to insist, that PC is not a 

humanitarian luxury, which could be postponed in 

difficult economic situations. Contrarily, it must be 

developed further because there will be a growing 

number of people in need of palliative care. In 

addition, the palliative approach is a model not only 

for the terminally ill but also for seriously and 

chronically ill patients. PC is necessary for those, who 

have to arrange with frailty, fear, serious health 

deficits or pain for the rest of their lives. 

The development of modern medicine in the last 

decades was focussed on new drugs and technologies. 

Health in many countries has become an important 

pillar of economy and growth. This economic 

paradigm is likely to undermine the human right for 

equality and good healthcare in many states. It makes 

the health market grow with more diseases and more 

patients. The prices for good care in a market 

orientated system rise enormously with a rapidly 

growing number of people being terminally ill and 

being left alone by society. But an unscrupulous 

industry, that is built on and profiting from growing 

fear and helplessness must not be tolerated or even 

fostered by politicians. 

PC does not focus on newly invented therapies, not 

on new diseases and it is not about more detailed 

knowledge of molecular structures and functions 

although it profits from new painkillers and it 

cooperates closely with oncology, immunology and 

other fields of medical technologies. 

We have to show to health authorities, that PC is 

more than just medicine. PC is ethical imperative for 

all health systems, because it is effective and aims to 

protect the dignity by socially, psychologically and 

medically assisting those who are in the greatest need. 

Strong agendas to implement PC within national and 

regional healthcare systems are a political key to 

protect the dignity of suffering human beings in a 

money-driven health market. 

To protect our citizens and give them trust, that we 

will care for all of those in need, no matter who they 

are and what they can afford, PC has to stay a public, a 

political challenge. Nations and regions should learn 

how to establish effective and sustainable palliative 

care for all in need. It is up to science to give evidence 

to best practice and it is up to politics to listen to 

science and decide in public interest. 



A Business Case for Substitution of Palliative 

Care from Hospitals to Hospice and Home Care 

Settings 

Groenewoud S. 1 

1 Lindeboom Institute, Veenendaal, Netherlands 

Aim: This abstract discusses the implications of 

substitution of palliative care. One third (35%) of all 

Dutch people die at a hospital and only 30% at home, 

despite most people want to die at home. Hospitals 

have low capacity (i.e. low number of palliative beds 

and professionals with specialized expertise of 

palliative care) to give palliative care. Practice shows 

that palliative care in hospitals is both of suboptimal 

quality and expensive compared to other palliative 

care settings, like hospices and specialized homebased 

case services. The business case is aimed to show 

the positive effects of substitution of palliative care 

from hospitals to hospice and home care settings on 

quality and costs. 

Design and Methods: This study started 

investigating the factors which influence substitution 

of palliative care. These factors are medical and 

demographic aspects and technological 

developments and were used to develop substitution 

scenarios. These scenarios effect the expertise of 

professionals, capacity and finance. The effects were 

calculated by comparing palliative care in hospitals 

with hospice and home care settings. Quantitative 

data was collected from health insurance companies 

and from Statistics Netherlands. This data was used 

for example to analyze costs of palliative care in 

different settings. Beside quantitative data qualitative 

information was added from interviews with experts. 

Results and Conclusion: This study will show that 

substitution of palliative care (from hospital to 

hospice and home care settings) has a positive effect 

on the quality and costs. These outcomes have to be 

taken into account by policymakers. The money 

saved by substitution should be invested in palliative 

care in hospice and home care settings to improve 

quality, reduce costs and better meet patients’ needs. 



The Social Business Case 

Demoulin L. 1 

1 Ernst & Young, Utrecht, Netherlands 

Need to rethink healthcare delivery and 

innovation 

There is a need to radically rethink the way healthcare 

is provided. Health consumers get older, fatter, richer 

and self-conscious. They grow in number and 

complexity. On the other hand, their willingness to 

pay for healthcare is limited. 

To be successful and viable in the long term, 

healthcare innovation needs to originate from 

healthcare itself. It will be challenged by policy 

makers and payers. It will be viable in the long term 

only if it is affordable and if it is supported by the all 

parties with an interest. 

What makes things complicated is that the number of 

parties involved increases and that their interests are 

conflicting. In healthcare today, payers have different 

sizes, shapes and forms, backgrounds and legal 

obligations. As scale tends to increase, these forces get 

fiercer. 

The key question here is how to step away from the 

common practice of isolated initiatives, 

misunderstandings and disbeliefs. 

Dialogue is key 

Innovators have different backgrounds and 

perspectives. Professionals tend to focus on the 

positive effects for their patients. But they do not 

understand costs and benefits for the organization. 

Managers construct impressive spread sheets but have 

no eye for societal benefits. Health executives pretend 

that benefits are generated in other policy areas. No 

one presents the complete picture. Then payers 

apologize and pinpoint others for funding. At the end 

of the day, no one takes full responsibility. Payers and 

providers play a victim role and let good ideas escape. 

The more disruptive the idea, the likelier it is to be 

dropped. 

We have experienced that dialogue is key in getting 

healthcare innovation funded. Fact is that we all have 

our own perspectives. What is needed is to broaden 

them to others and initiate a discussion. 

Based on recent experience in a national innovation 

program in long term care, together with the Dutch 

Ministry of Health and several industry organisations, 



we developed a simple but successful approach for 

supporting discussions with stakeholders. It is based 

on a dialogue around a social business case. 

Common needs 

Healthcare innovators seem to have common needs 

in order to be successful: 

Need for scoping and focus of innovative projects 

Need for a clear view of the new organization 

Need for overview and structure 

Need to organize and determine risks 

Need to find funding in an early stage 

The Social Business Case provides a method to create 

structure and review the overall business case for a 

health service. The ultimate goal is to support a 

successful dialogue with potential funders. It makes 

turns qualitative considerations into tangent 

measurable economic and social benefits and these 

are consistent against different perspectives. 

Perspectives 

The social business case focuses on several distinct 

perspectives: 

The customer perspective describes the primary basic 

needs of the customer 

The business model describes the scoping of the 

solution and showcases other basic minimum 

requirements 

The Organizational Case describes the investment, 

costs and revenues for the organization 

The Social case describes all the stakeholders in 

relation to the impact and quantifies social effects. 

Business model applied to palliative care 

In our presentation we explain the concept of the 

Social Business Case, demonstrate its added value and 

adopt it to palliative care. We will demonstrate how to 

document the building blocks of a business model for 

palliative care, including value, customer segments, 

distribution channels, customer relationships, 

revenue streams, key resources, key activities, costs 

and key partners. 



Public Health Approach to Palliative Care – 

The Example of Portugal 

Guerreiro I. 1 

1 Ministry of Health of Portugal, Unit Mission for 

Integrated Continuous Care, Lisboa, Portugal 

Palliative care (PC) in Portugal began its development 

with the creation of the National Network for 

Continuous Integrated Care (RNCCI) in 2006, aiming 

a National PC Program mentored by WHO to become 

a demonstration project.This Program was approved 

in March 2010.In its development was taken in 

account appropriate policies, the assurance of 

adequate drug availability, the need for education and 

that palliative care services should be implemented at 

all levels throughout the society, with community 

and home care teams, PC centers within hospitals and 

RNCCI and Intra-hospital PC teams.It was made a 

situational analysis, were engaged opinion leaders, a 

WHO expert, and the Program was open to public 

discussion and involvement of stakeholders. There is 

a wide range of different models of palliative care 

delivery in Europe and the option made was an 

integrated healthcare network including hospitals, 

RNCCI & primary care services, with flexibility, 

adapted to local and regional characteristics, and that 

urban areas will differ from rural areas or sparsely 

populated regions in what organization and care 

delivery respects. In rural areas or sparsely populated 

regions, the development was interdisciplinary and 

team-based work with flexibility of roles and 

responsibilities with role in hospital and community, 

as well as support to inpatient units of RNCCI. At a 

policy level PC in Portugal is an integral element of 

general healthcare services, with a focus on home care 

and with Primary care empowerment in palliative 

care by training and education combined with 

support and supervision. The main characteristics and 

features of the NPCProgram is to promote easy access 

to patients nearer their residence as possible, a wide 

range of PC services with focus on home care, to 

ensure organizational and care quality, monitoring 

and continuous improvement, equity and to create 

conditions to differentiated and advanced training in 

PC. The National PC Program also aims to change 

concepts in PC from terminal illness/end of life care to 

PC trough the disease, from prognosis of days/weeks 

to disease with limited life prognosis, from dichotomy 

intervention to flexible shared intervention. In 

implementation the need of training is a limiting 

factor to the rapid growth of specific service delivery 

of palliative care. At the educational and training level 

the Competence in Palliative Medicine approved by 

Portuguese Medical Association, there is an ongoing 

37 

Parallel sessions



Mentoring in PC to selected Home Care Teams and 

LTC facilities, Multidisciplinary trainingIt was 

developed an action plan that takes into account the 

goals defined in National PC Program (NPCP), the 

diagnosis of the current situation for PC and also the 

priorities of the Program. .The main preliminary 

results are: 78 new services implemented, (45 Home 

care support teams - 0,6 per 140.000 inhabitants, 14 

Hospital support teams, and 19 Palliative care Units - 

16 units within RNCCI with 190 beds and 3 outside 

RNCCI with 40 beds, a total of 230 beds - 22 beds per 

million inhabitants).At present we consider as strong 

points: The development achieved in 3 years albeit 

the existence of scarce resources in the beginning of 

RNCCI; NPCP approved being an integral element of 

general healthcare services; the focus on home care; 

The planning in urban and rural areas differ in service 

organization and delivery of care and Intervention 

based on needs, complexity, flexible and shared, the 

commitment of professionals.As areas for 

improvement: Still scarce resources; The need of 

training (clinical and leadership); Culture of palliative 

care not widespread; Resistance to early referrals with 

end of life referrals to Palliative care.Portugal has 

several challenges such as: Training of different 

professionals in a short period of time; Training as a 

limiting factor to the rapid growth of specific service 

delivery of palliative care;Widespread the culture of 

Palliative Care and the need of support to 

family/informal carers. 

Nausea and Vomiting 



Clinical Presentations and Mechanisms of N + 

V, Epidemiology 

Bruera E. 1 

1 UT M. D. Anderson Cancer Center, Palliataive Care & 

Rehabilitation Medicine, Houston, TX, United States 

Nausea and vomiting are frequent problems among 

palliative care patients. Most of the existing literature 

on the assessment and management of nausea and 

vomiting has emerged from chemotherapy-induced 

emesis as well as postoperative emesis. These two 

conditions provide for a clean inception point that 

allows for the design of clinical trials. The 

mechanisms, assessment, and clinical trajectory of 

chronic nausea in palliative care are considerably 

different from what is observed among patients with 

other mechanisms of nausea. Chronic nausea is 

usually multi-causal [constipation, autonomic failure, 

opioid analgesics, metabolic abnormalities, and 

gastro-intestinal pathology are all major contributors] 

and the assessment needs to be multi-dimensional 

[other symptoms frequently contribute and amplify 

the expression of nausea]. The management includes 

initially a careful diagnostic assessment and 

multidisciplinary care. Areas for future research will be 

discussed. 



Pharmacology of Anti-emetics and Newer 

Drugs 

Sanger G.J. 1 , Andrews P.L. 2 

1 Queen Mary University of London, Barts & The 

London School of Medicine and Dentistry, London, 

United Kingdom, 2 St George’s University of London, 

Division of Biomedical Sciences, London, United 


Discovery of the link between 5-HT 3 receptors and 

chemotherapy-induced vomiting (Miner & Sanger 

1986, Br J Pharmacol 88, 497) and subsequent 

development of 5-HT 3 receptor antagonists as antiemetic 

drugs, transformed oncology wards into dayrelease 

centres where food is readily available. 

However in palliative medicine, causes of emesis are 

more complex and wider treatment options are 

needed. Dopamine, histamine and muscarinic 

receptor antagonists are old drugs developed 

before molecular biology (Sanger & Andrews 2006, 

Autonomic Neurosci, 129, 3). They act primarily at 

sensory (area postrema, nucleus tractus solitarius) 

and/or motor (dorsal vagal complex) brain nuclei. 

Histamine (eg. cinnarizine, cyclizine, dimenhydrate, 

promethazine) and dopamine antagonists (eg. 

cyclizine, prochlorperazine, chlorpromazine, 

haloperidol, droperidol, domperidone, 

metoclopramide) are not selective in their actions, 

distinguishing one from another in the same class. For 

example, differences in sedative properties between 

chlorpromazine and haloperidol may be explained by 

similar affinity of chlorpromazine for dopamine D 2 

and histamine H 1 receptors, and greater selectivity of 

haloperidol for D 2 receptors. 5-HT 3 receptor 

antagonists (eg. granisetron, ondansetron, 

palonosetron; metoclopramide non-selectively 

antagonises at this receptor) mostly block 

gastrointestinal (GI) 5-HT sensitising vagal nerves 

projecting to the brainstem (Sanger & Andrews 2006). 

The receptor is an ion channel composed of 5-HT 3a , 5- 

HT 3b and other subunits. Preliminary data suggests 5- 

HT 3b polymorphisms change the antiemetic activity 

of ondansetron; in other forms of emesis receptor 

polymorphisms may change sensitivity to D 2 

antagonists (Nakagawa et al 2008, J Anesth 22, 397) or 

opiates. NK 1 receptor antagonism blocks 

substance P, a major neurotransmitter of the vagus 

and emetic motor nuclei. Aprepitant is used for 

chemotherapy-induced emesis but as for 5-HT 3 

antagonists, is better against vomiting than nausea. 

Animal studies reveal a broad spectrum of activity 

(Sanger & Andrews 2006). Dexamethasone is used 

with other anti-emetics, reducing delayed emesis, 

anorexia and fatigue. Inhibition of eicosanoid 

metabolism, inflammation and oedema are favoured 

mechanisms but these need investigation. 

Cannabinoids, acting at CB 1 receptors in the dorsal 

vagal complex, reduce vomiting at doses lower than 

those causing psychotropic effects. Drugs indirectly 

inhibiting emesis include octreotide, a somatostatin 

sst2 receptor agonist used to reduce intestinal fluid 

volume during bowel obstruction. Similarly the 

ability of metoclopramide to stimulate gastric 

emptying via 5-HT 4 receptor activation (in addition to 

antagonism at D 2 and at higher doses, 5-HT 3 

receptors) may help alleviate nausea and vomiting 

associated with delayed gastric emptying. Finally, it 

needs remembering that evidence for anti-emetic 

drug use in palliative medicine is often not derived 

from large trials (Glare et al 2008, Drugs 68, 2575). 

Further, while vomiting may be controlled it is more 

difficult to alleviate nausea. This suggests different 

mechanisms, a need to study nausea more carefully 

and develop new strategies. One hypothesis is that 

nausea and appetite are linked and therapeutic 

targets may be found among GI hormones involved 

with appetite control (Sanger et al 2011, Frontiers 

Pharmacol, 1, doi: 10.3389/fphar.2010.00145). 

Ghrelin released from the gastric mucosa is 

implicated in energy homeostasis, appetite 

stimulation and gastric motility. Ghrelin can inhibit 

emesis (in animals; nausea cannot be reliably 

measured), increase appetite after chemotherapy and 

in patients with gastroparesis, reduce nausea. Further, 

taste receptors in the tongue are found elsewhere in 

the GI tract including the colon; a link with hormone 

release, food aversion, nausea and other functions is 

speculated (Sternini 2007, Am J Physiol 292, G457). 

Understanding how GI hormones are controlled 

could lead to better control of nausea. 



Parallel Session “Nausea and Vomiting” 

(Current Evidence from Cochrane/other 

Systematic Reviews) 

Bennett M. 1 

1 Lancaster University, Lancaster, United Kingdom 

This session will describe systematic review evidence 

in the Cochrane library relating to antiemetics used in 


Reaching Out Towards Psycho- 

Oncology 



Psychosocial Care: A New Standard in Quality 

Cancer Care 

Travado L. 1 

1 Central Lisbon Hospital Centre - Hospital S. José, 

Clinical Psychology Unit, Lisbon, Portugal 

Cancer and its treatment have a tremendous 

psychological and social impact, alongside its 

physical impact. It is accompanied by a series of 

dramatic changes that involve the physical, 

emotional, spiritual, interpersonal and social 

dimensions of the person affected by cancer. At least 

50% of cancer patients suffer from distress, and many 

of them develop more serious psychological 

conditions, such as anxiety, depression and 

maladjustment disorder. Psychological morbidity has 

significant clinical consequences, including poor 

compliance with treatment and reduced quality of 

life. Psycho-oncology services provide interventions 

aimed at preventing or reducing the emotional 

impact of cancer and improving patients’ skills to 

cope with the demands of treatment and the 

uncertainty of the disease. There is evidence that 

providing these services to patients and their families 

as part of standard regular care reduces the distress 

and psychosocial morbidity associated with cancer 

and improves quality of life and well-being during 

and after cancer treatment. In spite of these evidences 

psychosocial needs of cancer patients go often 

unrecognized and availability of services to meet 

them are still scarce. 

Supportive care for cancer patients is thus considered 

fundamental to attaining the highest standard of 

health and must therefore be recognized as an 

important health issue. Over the past several years, 

the health care organizations in a number of 

countries, including Australia, Canada, the European 

Union and the United States of America, have 

recognized the importance of incorporating 

psychosocial care into national cancer plans. 

In 2007, the United States’ Institute of Medicine 

(IOM), National Academies of Science, a respected 

public health policy body, issued a landmark report 

outlining the strong evidence base for efficacy of 

psychosocial intervention in cancer care and stated 

that the psychosocial domain must be integrated into 

routine cancer treatment. 

The International Psycho-Oncology Society reviewed this 

report and others published internationally and 

determined that there was sufficient evidence and 

experience available to propose a new international 

quality standard. To this end, IPOS has developed a 

Statement on Standards and Clinical Practice Guidelines 

in Cancer Care, stating that: 

- Quality cancer care today must integrate the psychosocial 

domain into routine care 

- Distress should be measured as the 6 th vital sign after 

temperature, blood pressure, pulse, respiratory rate and 

pain (www.ipos-society.org) 

This statement was unanimously endorsed by the 

UICC at the World Cancer Congress in August 2010, 

and IPOS has now opened the call for endorsement 

from other societies. With these actions IPOS expects 

to create a synergistic effect upon international and 

national efforts to improve psychosocial care for those 

coping with cancer. 



Anxiety and Sadness 

Die Trill M.L. 1 

1 Hospital Universitario Gregorio Marañón, Oncology, 

Madrid, Spain 

“The trauma of birth occurs only once. The trauma of 

death is experienced over and over again during the 

course of a lifetime” (E. Gossman). 

Death implies, among other things, a threat: the 

threat of non-existence. Awareness of our mortality 

and physical vulnerability causes anxiety. Human 

beings, along the course of our lives, involve in 

numerous strategies to evade and suppress the anxiety 

that rises from the awareness of our finitude and our 

mortality. Human beings are also concerned with 

meaning in our lives. As cultural anthropologist 

Becker says, anxiety also appears when we become 

aware of all the ways in which meaning in our lives 

can fall apart: through failure, illness, and through 

death. 

Anxiety is frequent among palliative care cancer 

patients, and has been shown to contribute to a 

greatly diminished quality of life (Wilson et al., 2007). 

Higher levels of anxiety have been documented by 

Baile et al (2010) in terminally ill patients who express 

more concerns. Among the major concerns expressed 

by patients were loss of function, the future, and 

ability to care for themselves. What was striking was 

the generally poor concordance between patients´ 

reporting of their concerns and physicians´ reporting 

of the patients´ concerns. Higher levels of anxiety 

have been correlated with other variables as well 

(poorly controlled pain, etc.). 

Sadness occurs in response to real or imagined loss. It 

is part of the grieving process. Normal sadness can 

alter sleeping and eating patterns and the ability to 

concentrate; it may increase irritability; and it may 


facilitate withdrawal from social activities. Even 

though sadness is usually described as brief and timelimited, 

clinical experience shows that it can be 

prolonged in time, varying in intensity, and may or 

may not turn into a major depression. Persisting 

sadness is sometimes referred to as mild depression. At 

this level, symptoms may occur without a specific 

loss. Importance and difficulties in diagnosing and 

differentiating sadness from mild and major 

depression have been widely described in the 

palliative care and psycho-oncological literature, and 

will be addressed.” 

My wife cried a lot when she lost her hair. We expected her 

to be upset. But we started to notice she was crying all the 

time, even once her hair started to grow back” 

How anxiety and sadness influence adjustment to the 

end of life, how they vary along the disease 

continuum, and how they can be successfully 

addressed and alleviated will be the focus of this talk. 



Definition Diagnostic Tools and Treatment of 

Depression in Palliative Care 

de Walden-Galuszko K. 1 

1 Regional Centre of Oncology, Gdańsk, Poland 

The aims of this study: 

1. Classification problems of depression 

2. Assessment of depression 

3. Management depression 

There are many diagnostic difficulties of depression in 

cancer patients due to many causes. We should assess 

also the difference between “normal sadness”, 

adjustment disorders (classified by DSM-IV and 

ICD10) and “major depression”. 

The evaluation of depression bases on exclusive 

approach (eliminates somatic symptoms) In clinical 

practice we base mostly on psychiatric interview 

(ICD-10) - in doubts - we use Minimental State Scale - 

(cognitive functions) HAD (Hospital and Anxiety 

Scale), GDS (Geriatric Depression Scale). In the group 

with cognitive impairment - OSDA (Observational 

Scale of Depression and Anxiety). 

Depression should be managed with combination 

emotional support, educational interventions 

psychotherapy (crisis intervention model and 

cognitive behavioural therapy) and 

pharmacotherapy. 

In the group of patients with depression SSRI 

(selective serotonin reuptake inhibitors) SNRI 

(selective noradrenergic reuptake inhibitors) or NRI 

(noradrenergic reuptake inhibitors) are 

recommended. Sometimes typical psychostimulants 

(eg methyl phenidat) is used. Depressive patients with 

anxiety should be treated with sedative 

antidepressants eg NASSA (noradrenergic selective 

serotonine antidepressant), IMAOR (inhibitors 

monoaminooxydase reversible) or atypical drugs 

(mianserin, trazodon, valdoxan). 

Patients in advanced cancer are treated with many 

drugs - therefore the problem of interaction of drugs is 

very important. 

Conclusions : 

1. Classification of depression in the group of cancer 

patients should be made more precisely. 

2. The tools of depression assessment should be used 

more frequently in palliative care. 

3. The management of depression in cancer patients 

in advanced stage seems to be insufficient. 



Hopelessness and Related Variables in Cancer 

Care 

Grassi L. 1 

1 Section of Psychiatry, Department of Medical and 

Surgical Disciplines of Communication and Behavior, 

University of Ferrara, Ferrara, Italy 

The concept of hopelessness refers to a subjective and 

affective state characterized by a negative view of the 

future, a sense of loss of control, confidence, courage, 

and the energy to achieve one’s own goals. Symptoms 

of hopelessness, as a specific cluster within affective 

disorders, have been shown to correlate more with 

each other than with other depressive symptoms and 

more than with other psychopathology symptoms. 

Hopelessness has also been reported not only as being 

present in depressive disorders, but to be one of the 

major indicators of demoralization, independent of 

the presence of clinical depression. 

In cancer patients the feeling of hopelessness is 

common and can threaten their physical and 

psychological well-being. It has been associated with 

poor adjustment to illness, depression, low 

satisfaction with support received from interpersonal 

ties, and poor quality of life. Hopelessness and 

depression mediated the pathways between illnessrelated 

factors and desire for hastened death both in 

hospitalized and terminally-ill cancer patients and 

hopelessness also contributes uniquely to the 

prediction of suicidal ideation, controlling for level of 

depression, among advanced cancer patients in an 

advanced phase of illness. 

Several guide-lines in doctor-patient communication 

in oncolopgy indicate the need that hope can be 

preserved, indirectly suggesting that not giving hope 

corresponds to create hopelessness. In the Southern 

European Psycho-Oncology Study (SEPOS), 

hopelessness was mesaured in 312 cancer patients in 

different phases of illness. Regression analysis 

indicated that it was related both to depression 

(HADS-Depression score), but also to maladaptive 

coping and poor well-Being, as well ass to cancerirelated 

worries. There was no difference between 

patients completely aware of their condtion and those 

who were partially aware. 

Hopelessness can be also part of the emotional distress 

of family caregivers of cancer patients and can be 

experienced by cancer care health professionals as 

well. Thus, hopelessness, as a complex 

multidetermined phenomen, should be monitored 

ovser time during the trajectory of illness in cancer 

patients and their caregivers, including cancer care 

staff. 

References: 

Khan L, Wong R, Li M, et al. . Maintaining the will to 

live of patients with advanced cancer. Cancer J. 

2010;16:524-31. 

Grassi L, Travado L, Gil F, et al. Hopelessness and 

related variables among cancer patients in the 

Southern European Psycho-Oncology Study (SEPOS). 

Psychosomatics. 2010;51:201-207. 

Opioid Receptors 



µ-Opioid Receptors: Correlation of Agonist 

Efficacy for Signalling with Ability to 

Activate Internalisation 

McPherson J. 1 , Rivero G. 1,2 , Llorente J. 1 , Al-Sabah S. 3,4 , 

Bailey C.P. 5 , Rosethorne E.M. 6 , Charlton S.J. 6 , Henderson 

G. 1 , Kelly E. 1 

1 University of Bristol, Physiology and Pharmacology, 

Bristol, United Kingdom, 2 Omnia Molecular, 

Barcelona, Spain, 3 University of Reading, School of 

Pharmacy, Reading, United Kingdom, 4 Kuwait 

University, Department of Pharmacy and Toxicology, 

Safat, Kuwait, 5 University Of Bath, Pharmacy and 

Pharmacology, Bath, United Kingdom, 6 Novartis 

Institutes for Biomedical Research, Horsham, United 


Background: Traditional models of G proteincoupled 

receptor (GPCR) activation which assume 

that all agonists stabilize a single active receptor 

conformation might predict that efficacies at all 

signaling outputs are tightly correlated with one 

another. Recently, models of receptor function have 

been proposed which allow the possibility of a range 

of distinct active conformations, stabilized by 

different agonists to varying extents. This would be 

expected to reduce or remove the tight correlation 

between all signaling outputs. This is referred to as 

biased agonism or functional selectivity. 

It has been proposed that morphine and [D-Ala 2 , N- 

MePhe 4 , Gly-ol]-enkephalin (DAMGO), both ligands 

at the µ-opioid receptor (MOPr) display some 

functional selectivity with respect to receptor 

regulation. It is not known whether most opioid 

ligands are functionally selective, or whether 

efficacies at a range of signaling outputs will correlate 

tightly with one another. A range of MOPr ligands 

were examined in order to compare their ability to 

activate G proteins with their abilities to; a) induce 

phosphorylation of MOPr at serine 375, a residue 

considered to be important in MOPr regulation, b) 

induce association with arrestin-3, and c) cause 

internalization of MOPr. 

Methods: G protein activation was assessed using 

[ 35 S]-GTPńS binding stimulation to membranes 

prepared from HEK293 cells stably expressing MOPr. 

Phosphorylation of serine 375 was assessed by 

Western blot using a commercially available antiphosphoserine 

375 antibody. The ability to promote 



association of receptor with arrestin-3 was assessed 

using the PathHunter cell based assay (Discoverx). 

Cell surface receptor loss of MOPr was assessed by 

ELISA using a colorimetric alkaline phosphatase essay. 

The affinity of ligands for MOPr was determined by 

competitive radioligand binding performed using 

membranes prepared from HEK293 cells stably 

expressing MOPr. 

Results: In general, there is a good correlation 

between ligand efficacy for G protein activation and 

arrestin-3 recruitment. However a few agonists (in 

particular endomorphins 1 and 2) displayed an 

apparent bias towards arrestin-3 recruitment. The 

ability of agonists to promote arrestin-3 recruitment 

correlated well with promotion of both Ser375 

phosphorylation and MOPr internalization. 

Conclusions: Our data shows that for the majority 

of MOPr agonists, efficacy at G protein activation 

predicts efficacy at arrestin-3 recruitment, ability to 

promote Ser375 phosphorylation, and ability to 

promote receptor internalization. Morphine´s weak 

ability to promote internalization may be explained 

by its low efficacy for G protein activation. 

*additional thanks for original manuscript to William 

L. Dewey, Virginia Commonwealth University 

Medical Center, Richmond, Virginia, and Cornelius 

Krasel, University of Reading, Whiteknights, United 

Kingdom. 



Update on New Mechanisms of Opioid 

Sacerdote P. 1 

1 University of Milan, Department of Pharmacology, 

Milano, Italy 

Opiates are among the most effective analgesics 

known and elective in the treatment of severe pain.. 

As a class opiates share a common profile of unwanted 

effects but there are also significant differences in 

ligand liability for producing these actions. These 

drugs produce their effects by acting on G protein 

coupled receptors (GPCRs) denominated MOR, DOR 

and KOR. These receptors when activated, decrease 

adenylate cyclase activity, increase K currents, inhibits 

Ca channels. Novel strategies for the development of 

new and better analgesics are those that take 

advantage of allosteric properties of GPCRs and their 

ability to adopt active conformations that differ in 

their pharmacologically, signalling and regulatory 

properties.MORs are capable of interacting with and 

activating numerous Ga subtypes . Recent 

observations indicate that the interaction of MOR 

with different Ga subunits is dictated by the type of 

ligand bound to the receptors. A full agonist, like 

DAMGO, might activate all Ga proteins expressed in a 

cell, but a partial agonist may only be able to stimulate 

some Ga coupled signalling. Therefore after binding 

identical receptors each agonist determines the classes 

of GTP -binding regulatory transducer proteins to be 

activated, suggesting that it is possible to dissociate 

analgesic actions from unwanted side 

effects.Interestingly buprenorphine, in contrast to 

morphine or methadone, has been shown to be able 

to couple also to a pertuxis toxin insensitive G 

protein: this type of G protein can be a particularly 

important target in neuropathic 

hyperalgesia.Following activation, MOR undergoes 

regulation by a cascade of events that promote 

receptor desensitization and internalization, and is 

thereafter recycled into plasma membrane in active 

state. However not all agonist ligands at the MOR 

promote the same degree of receptor desensitization 

and internalization.Moreover it has recently been 

demonstrated that opioid receptors can form homo 

and hetero dimers (MOR-MOR; MOR- 

DOR).Moreover, these dimeric receptor units have 

peculiar characteristic that should lead to the 

development of new molecular entities. 

Significant differences among opioid drugs are 

present also when considering their ability to 

modulate the immune function. Morphine in fact, 

induces a general immunosuppression that could be 

particularly contraindicated in pain treatment in 

special populations. However, not all opiate drugs 

exert the same immunosuppressive properties. From 

several experimental studies it is emerging that opioid 

drugs such as tramadol and buprenorphine do not 

exert a negative impact on the immune system. In an 

experimental model of surgery -induced 

immunosuppression, morphine, fentanyl, 

buprenorphine and tramadol were compared at equianalgesic 

doses for their ability to prevent surgery 

pain and to counteract surgery stress -induced 

immunosuppression. Although all the opioids were 

able to alleviate pain, only in tramadol and 

39 

Parallel sessions



buprenorphine treated animals a complete 

prevention of immune alterations related to surgery 

was observed. 

Finally, the recent advances in pharmacogenetic are 

describing polymorphism of the gene encoding for 

the MOR. Some of these allelic variations can affect 

both desensitization and G-protein coupling of MOR. 

Other polymorphisms have been related to the 

development of side effects, and a few studies have 

tried to show a correlation between MOR genotypes 

and opioid requirements. Since several important 

polymorphisms have been described also for the 

enzymes involved in opioid pharmacokinetic, a 

complete knowledge regarding the interplay between 

genes affecting opioid pharmacokinetics, opioid 

transporters and pharmacodynamics is still needed in 

order to understand the role of pharmacogenomics 

for this class of drugs. 

In conclusion, the new acquisitions on the molecular 

mechanisms linked to opioid receptors and ligands 

will hopefully lead to the development of new 

analgesics or to a better drug choice for each patient. 



Distinct Sensory Neuron Opioid Receptor 

Expression in Different States of Disease 

Schaefer M. 1 , Mousa S.A. 1 

1 Charité Univerity Berlin, Anaesthesiology and 

Intensive Care Medicine, Berlin, Germany 

Although opioid receptors have been initially 

discovered only in the brain, subsequent studies have 

demonstrated their expression and analgesic efficacy 

also at the level of the spinal cord and the peripheral 

nervous system. Opioid receptors on peripheral 

sensory neurons can be targeted either by direct 

local/topical application of opioids or by the systemic 

administration of peripherally restricted opioids that 

do not pass the blood brain barrier. The advantage of 

this approach might be similar analgesic efficacy 

compared to systemic opioids without the occurence 

of central side effects. In non-activated sensory 

neurons local application of opioids does not elicit 

any effect. Following short lasting excitation of 

sensory neurons local application of opioids produces 

antinociceptive effects due to opioid receptor 

coupling and subsequent inhibition of the excitation 

and pain transmission of sensory neurons. This 

antinociceptive effect is increased during states of 

persistent inflammatory pain caused by an upregulation 

of opioid receptor expression and 

coupling. Inflammatory pain leads to an elevated 

NGF concentration in the area of inflammation, its 

increased retrograde axonal transport towards dorsal 

root ganglia and an enhanced opioid receptor 

expression in sensory neurons. In contrast, in 

neuropathic pain states due to a nerve injury or to 

metabolic disturbances (e.g. diabetic neuropathy) the 

expression of opioid receptors is greatly reduced. 

Preliminary findings suggest that this might be due to 

an enhanced targeting of opioid receptors towards the 

lysosomal pathway. More insights in these processes 

might lead us to a better understanding of how to 

improve opioid responsiveness in certain states of 

disease. 

Identifying Outcome Indicators 



EPCRC – Quality Assurance and Outcomes in 

Palliative Care: A Common Ground Is 

Emerging 

Kaasa S. 1,2 , Faksvåg Haugen D. 1,3 , Jensen Hjermstad M. 4,5 , 

Håvard Loge J. 6,7 , Strasser F. 8 





Trondheim, Norway, 3 Haukeland University Hospital, 

Regional Centre of Excellence for Palliative Care, 

Western Norway, Bergen, Norway, 4 South Eastern 

Norway, Oslo University Hospital, Regional Centre 

for Excellence in Palliative Care, Oslo, Norway, 

5 NTNU, Palliative Care Research Centre (PRC), 

Department of Cancer Research and Molecular 

Medicine, Faculty of Medicine, Trondheim, Norway, 

6 NTNU, Department of Cancer Research and 

Molecular Medicine, Faculty of Medicine, Trondheim, 

Norway, 7 Rikshospitalet University Hospital, Norway 

and National Resource Centre for Studies of Longterm 

Effects after Cancer, Oslo, Norway, 8 Cantonal 

Hospital St.Gallen, Oncological Palliative Medicine, 

Division of Oncology/Hematology, Department of 

Internal Medicine and Palliative Care Center, St. 

Gallen, Switzerland 

Symptom management is one of the key tasks in 

cancer palliative care. Systematic assessment of 

symptoms is crucial in order to achieve a correct 

diagnosis, and to monitor the effect of treatment. It 

may also be applied as one of several quality 

indicators to monitor the quality of health care 

programs. Three EPCRC Work Packages were assigned 

the task to develop methodologies for assessment and 

classification of pain, depression, and cachexia. A 

systematic approach was applied (1) consisting of 

literature reviews, expert surveys, international 

empirical data collections and finally software 

development for a computerized assessment tool. 

Based upon the results from this process, a total set of 

items for the diagnosis of depression in palliative care 

has been finalized. An assessment tool and a 

classification system for cancer cachexia have been 

published (2) as well as a revised system for cancer 

pain classification (3). 

Electronic patient records are implemented in many 

institutions today. An electronic format of symptom 

assessment opens for opportunities for a dynamic 

approach which may increase validity, user 

friendliness and applicability in clinical practice. In 

order to incorporate symptom assessment and 

classification into the daily decision making process 

in the future, the data collection and presentation 

need to be in an electronic format. 

References: 

1. Kaasa S, Loge JH, Fayers P, Caraceni A, Strasser F, 

Hjermstad MJ, Higginson I, Radbruch L, Haugen DF. 

Symptom assessment in palliative care: A need for 

international collaboration. J Clin Oncol 2008; 

26:3867-73. 

2. Fearon K, Strasser F, Anker SD, Bosaeus I, Bruera E, 

Fainsinger RL, et al. Definition and classification of 

cancer cachexia: an international consensus. Lancet 

Oncol. 2010. 

3. Knudsen AK, Brunelli C, Kaasa S, Apolone G, Corli 

O, Montanari M, Fainsinger R, Aass N, Fayers P, 

Caraceni A, KLepstad P, on behalf of the European 

Palliative Care Research Collaborative (EPCRC) and 

the European Pharmacogenetic Study (EPOS). Which 

variables are associated with pain intensity and 

treatment response in advanced cancer patients? - 

Implications for a future classification system for 

cancer pain. Eur J Pain 2011; 15:320-7. 



PRISMA: Results from a Co-ordinating Action 

to Improve Outcomes in Palliative and End of 

Life Care across Europe 

Higginson I.J. 1 , Daveson B. 1 , Lopes Ferreira P. 2 , Antunes 

B. 1 , Kaasa S. 3 , Toscani F. 4 , Bausewein C. 1 , Vanden Berghe 

P. 5 , Gysels M. 6 , Gomes B. 1 , Benalia H. 1 , Deliens L. 7 , Barros 

Pinto A. 8 , Powell R.A. 9 , Derycke N. 10 , Harding R. 1 



Rehabilitation, London, United Kingdom, 

2 Universidade de Coimbra, Center for Study and 

Research in Health, Coimbra, Portugal, 3 Norwegian 

University of Science and Technology (NTNU), 

European Palliative Care Research Centre, 

Trondheim, Norway, 4 University of Torino, 

Department of Public Health and Microbiology, 

Torino, Italy, 5 University of Antwerp, Department of 

Philosophy, Centre of Ethics, Antwerp, Belgium, 

6 Barcelona Centre for International Health Research 

(CRESIB), Barcelona, Spain, 7 VU University 

Amsterdam, EMGO Institute for Health and Care 

Research, VU University Medical Center, Amsterdam, 

Netherlands, 8 Hospital de Santa Maria, Lisbon, 

Portugal, 9 African Palliative Care Association, 

Kampala, Uganda, 10 University of Antwerp, 

Department of General Practice, Antwerp, Belgium 

Introduction: With an annual 1.7 million deaths 

from cancer in the whole of Europe, and 1.6 million 

with pain and many other symptoms in the last year 

of life, there is an urgent need to improve care at the 

end-of-life for patients and families. Outcome 

measurement presents an important way to achieve 

this, but for palliative and end of life care to move 

forward measures must be co-ordinated. 

Methods: PRISMA is a pan-European co-ordinating 

action funded under Framework Programme 7 of the 

European Commission. With 11 partners in 9 

countries, it is delivering a series of 8 Work Packages 

with the common aim of promoting best practice in 

the assessment and measurement of outcomes of 

palliative and end-of-life care. It sets an agenda and 

guidance that reflects European cultural diversity, and 

is informed by both public and clinical priorities. 

Guidance in the selection, adaptation and use of core 

tools is informed by experts in public health and 

clinical research. 

Results: The work focussed on refining and 

improving the outcome measures: the Palliative 

Outcome Scale (POS) and Support Team Assessment 

Schedule (STAS), which was contributed to by the 8 

work pages as follows: 

WP1: Cultural difference in end-of-life care and how 

this impacts on measurement of outcomes 

WP2: Public priorities and preferences for end-of-life 

care - and influences on measure content 

WP3: Clinical research priorities in end-of-life care - 

and influences on measure content 

WP4: Best practice and resources for the use of end-oflife 

care quality indicators - survey and consultation to 

understand clinicians needs for outcome measures, 

current use of outcome and assessment measures and 

appraisal of existing measures, resulting in web-based 

easy to use downloadable guidance on outcome 

measurement, and key measures including POS and 

POS-S 

WP5: Best practice in symptom measurement - 

development and validation of POS-S an easy to use 

symptom assessment measure and the POS Booklet a 

portable clinical aid to guide use, score and 

interpretation of POS and POS-S. Also on-line in 6 

languages at http://www.csi.kcl.ac.uk/pos-sbooklet.html 

WP6: Best measurement practice in long term care 

settings - to establish collaboration 

WP7 - Management - to integrate findings and 

improve collaboration 

WP8 - Final conference with policy makers held in 

March 2011 to determine future research priorities 

As a result we are launching at EAPC, a new modular 

structure and improved format for POS and POS-S, 

with different downloadable options to use POS and 

POS-S in different conditions, settings and 

circumstances, and interpretation of scores. Better 

web based information on STAS is also available. We 

are also launching guidance on the use of outcome 

measures and new training programme to help 

clinicians develop the competences to undertake 

outcome measurement in different settings. 

Discussion: PRISMA outputs are accessible to the 

wider community of clinicians, researchers, policy 

makers, funders at . We encourage new partnerships 

to build on the work of PRISMA and catalyse the 

conduct of evidence-based care that reflects European 

populations and priorities. 



Identifying Outcome Indicators – OPCARE 9 

Ostgathe C. 1 , on behalf of the OPCARE9 Collaboration 

1University Erlangen, Palliative Medicine, Erlangen, 

Germany 

OPCARE9 was a three year project within the 

European Union 7th Framework. Nine participating 

countries (Argentina, Germany, Netherlands, New 

Zealand, Italy, Slovenia, Sweden, Switzerland and the 

UK) had the task to build up a sustainable 

international collaboration of experts in the field of 

palliative care. The aim was to optimize research and 

clinical care for cancer patients in the last days of life. 

The work packages (1) signs and symptoms of 

approaching death (2) end of life decisions (3) 

complementary comfort care (4) psychological and 

psychosocial support, and (5) voluntary service were 

assigned within this project. An overarching objective 

was to identify and evaluate quality indicators (QI) 

against which to measure future care, with a particular 

focus on the last days of life. Quality Indicators were 

identified as a “cross-cutting theme” for all working 

groups within the OPCARE9 collaboration and a 

special taskforce with membership from all the 

participating countries had been appointed. 

To identify published and available QI referring to the 

last days of life, a literature review and a search in 

national guidelines was performed. The selected QI 

were evaluated regarding quality and applicability by 

an international panel of experts in the OPCARE9 

community. More than 30 QI were identified and 

assessed for their usefulness in measuring quality of 

care in the last week of life. A high consensus on 

several QI as “good descriptors of quality care” was 

reached on all levels assessed; structure, process and 

outcome. The consensus on QI as “applicable at the 

end of life” was rather low; this is especially true for QI 


on outcome. Interestingly, a high number of ideas for 

additional QI were raised by the experts. 

As yet, no definitive set of QI for the last days of life of 

cancer patients exists. Both existing and newly 

generated QI need to be further developed, tested and 

implemented, focusing clearly on the dying patients, 

their families / relatives as well as their caretakers. 

Accordingly, the OPCARE9 cross cutting QI task force 

can be a major European resource to develop and 

carry out studies on QI in end-of-life care, evaluating 

their reliability, validity and effectiveness in European 

quality improvement strategies and facilitating the 

transfer of knowledge between settings and countries. 



Implementation of Quality Indicators for the 

Organisation of Palliative Care 

Engels Y. 1 , Knowledge Center for Pain and Palliative 

Medicine 

1 Radboud University Nijmegen Medical Centre, 

Anesthesiology, Pain and Palliative Medicine, 

Nijmegen, Netherlands 

In February 2011 we started a 7 th framework project, 

IMPACT, with partners from 10 European countries, 

and in cooperation with an expert in Australia. 

Unique in this project is the focus on cancer and as 

well on dementia. Besides, the project group 

represents all relevant professionals that are involved 

in palliative care for these patient groups: GP, nurse, 

medical oncologist, psychiatrist, social worker, 

psychologist, sociologist, researcher, radiotherapist 

etc. 

It is an intriguing question why available knowledge 

is not used, even when there is evidence of its 

effectiveness in helping to solve problems. 

Implementation research has developed models for 

stepwise implementation but it is still unclear which 

strategies are effective for whom and which factors 

influence the effectiveness of implementation 

strategies. 

The overall objective of IMPACT is to develop optimal 

strategies for implementing quality indicators to 

improve the organization of palliative cancer and 

dementia care in Europe. These strategies should be 

applicable across diverse healthcare settings. 

Therefore we will focus on the implementation 

process and will concentrate the work packages on: 

the organization of palliative care, the development 

of a set of setting-specific implementation strategies 

including an interactive website, the evaluation of the 

use of the selected strategies to implement quality 

indicators with regard to adherence to the quality 

indicators, factors influencing the effectiveness of the 

implementation strategies. 

Work package leaders Yvonne Engels, Steve Iliffe, 

Myrra Vernooij-Dassen, Lukas Radbruch, Stein Kaasa 

and Rabbih Chattat. 

How Should Palliative Care Deal 

with Patients Requesting PAS or 

Euthanasia 



How Should Palliative Care Deal with Patients 

Requesting PAS or Euthanasia 

Finlay I.G. 1 , Wales 

1 Cardiff University, Palliative Medicine, Cardiff, 


Palliative care is involved in debates over physician 

assisted suicide and euthanasia (PAS/EU) for several 

reasons, some relating to the patient individually and 

some to the societal climate in which a request is 

made, and whether palliative care is exists as a 

recognised specialty or is provided by generalist 

services without recourse to specialist services. 

Requests for euthanasia range from the exploratory 

question to the deeply determined individual, 

undeterred by any intervention. 

Possible responses can be considered under palliative 

care’s duty to respond if: 

the question is raised by an individual patient in the 

context of ongoing care 

a patient population belong to a pressure group 

wishing to extend legalisation of PAS/EU 

national policies are being formulated to legalise 

PAS/EU 

Individual terminally ill patients may ask about 

euthanasia for a variety of reasons. For some it is a way 

to test out what the future holds and openly discuss 

death, while for others it stems from determination to 

access PAS/EU or to have the ‘option’ of PAS/EU 

should they feel life is becoming too difficult. Some 

fear what lies ahead and, knowing death is the 

inevitable end point, see nothing to be gained by 

potentially enduring a situation they fear. Often such 

patients are relatively well, with existential distress or 

fears, rather than physical symptoms, a significant 

number of whom may have an undiagnosed and 

untreated depression that can remain undetected even 

though they proceed to physician assisted suicide.[i] 

So, the first question to be posed to the patient is to 

explore why they ask, what they fear and how they 

perceive their illness to progress. This may reveal 

misconceptions, influences on their thinking or 

unrelieved sourced of distress that can be addressed 

and allow creative solutions. The response of the 

physician or nurse will influence the patient’s 

perception of how to proceed. Realistic reassurance 

and an active approach to problems is a core duty of 

palliative care, interpreting the integrated influence 

on distress from physical, emotional, social and 

spiritual domains. 

If the initial request is made as a tester to sound out 

what lies ahead, the professional who agrees may be 

interpreted as signalling that ‘yes you are right, you 

would be better off dead’ since the doctor or nurse 

who has seen such patients before will have a far 

better idea of likely scenarios that the patient, even 

when that patient is a member of a health care 

profession. 

In jurisdictions were euthanasia is legalised, the 

palliative care filter imposed by some hospitals in 

Belgium - a requisite time in which specialist palliative 

care is actively involved in providing care - results in 

up to 4 in 5 of such patients not proceeding with their 

request. This supports the theory that a patient 

cannot conceive how the experience rather than just 

the information about effective expert support can 

transform everyday living. 

A difficulty for professionals involved in euthanasia is 

the tension that exists in providing active care to 

improve the quality and experience of life, yet 

simultaneously planning to foreshorten life and 

abandon such attempts which become futile in the 

face of a fixed appointment to end life. If a utilitarian 

approach is taken to costs in a world with ever tighter 

healthcare budgets, the administration of PAS/EU 

earlier rather than later could appear a financial 

advantage. 

In those countries where pressure groups are 

campaigning to legalise PAS/EU, palliative care 

services would do well to learn from other 

jurisdictions and ensure that such practices are 

outside the routine provision of care. Models are 

feasible whereby a request is assessed and managed 

without the direct involvement of the clinical team. 

To developing countries, where palliative care is 

difficult to establish, the advent of PAS/EU signals 

that the West has abandoned palliative care to the 

‘cheap option’ of foreshortening life. 

[i] BMJ 2008; 337:a1682 



How Not To Deal with Requests for PAS or 

Euthanasia 

Materstvedt L.J. 1 

1 Norwegian University of Science and Technology 

(NTNU), Department of Philosophy, Trondheim, 

Norway 

Research has demonstrated that patients request 

E/PAS for a number of reasons, and that a “request” is 

not always that. On the contrary, it may be an 

expression of something else. Hence there exist 

various strategies for dealing with patients who air 

thoughts about wanting to die, including treatment 

of depression and psycho-social support. Together 

these may be coined “negative” responses since they 

all attempt to avoid premature death. This 

presentation addresses none of these; instead, it deals 

with the “positive”, or affirmative, response that 

consists in complying with a request. The performing 

of E/PAS is now an option within certain palliative 

care services in Belgium - called the “integral” model. 

This model is rejected, both clinically and ethically. 

Furthermore, the idea of “palliative futility” upon 

which it is based is shown to be devoid of meaning. In 

countries where E and/or PAS is legal, palliative care 

providers should refrain from engaging in these 

activities if they are to remain true to the practice and 

values of palliative care. 



Core Competencies – What 

Has to be Taught? 



Core Competencies: What Has To Be Taught? 

Pereira J. 1 

1 University of Ottawa, Canada Bruyère Continuing 

Care, Division of Palliative Care, Ottawa, ON, Canada 

Competencies are at the core of clinical practice, 

education and research. Services need to hire 

competent staff, provide ongoing professional 

development opportunities and conduct performance 

evaluations. All these require competencies that are 

appropriate to the level of service required (e.g. 

primary versus secondary versus specialist level). 

Education programs are based on learning objectives 

that are in turn guided by the competencies to be 

acquired. Establishing competencies are therefore 

critical. The level at which the competency is 

established (broad versus detailed) is equally 

important. 

Competencies that are too broad and vague risk being 

irrelevant. They provide insufficient detail for the 

development of curricula and evaluation frameworks 

and do not help in standardizing regional/national 

training programs or professional roles (such as what 

constitutes a specialist service in palliative care). On 

the other hand, detailed competencies risk being 

impractical and overwhelming. This presentation will 

explore this conundrum, drawing on examples and 

providing examples of potential solutions. 



DACUM Process for Developing Palliative Care 

Core Competencies in Switzerland 

Gamondi C. 1 , Currat T. 2 , Hoengger C. 3 

1 Oncology Institute of Southern Switzerland, 

Palliatiave Care Service, Bellinzona, Switzerland, 

2 University Hospital, CHUV - Service de soins 

palliatifs, Lausanne, Switzerland, 3 Service de la Santé 

Publique, Programme Soins Palliatifs, Lausanne, 

Switzerland 

In 2009 in Switzerland, the Federal Office of Public 

Health initiated a national strategy to coordinate the 

development of palliative care. In this context, 

Palliative.ch (National Palliative Care Association) 

commissioned his working group SwissEduc to 

develop a comprehensive catalogue of competencies 

for health professionals working full time in palliative 

care.The aim was to create a document describing the 

activities of Swiss palliative care professionals 

providing key information for building curricula, 

assessing learning needs, constructing portfolios, 

establishing job descriptions, defining and assessing 

levels of competencies.SwissEduc decided to build this 

catalogue on two sources: international references 

(EAPC recommendations and scientific literature) and 

current activities of the Swiss practitioners. To capture 

these competencies, three sessions were organized in 

2010. For the first workshop 8 nurses, 1 chaplain and 

8 physicians working in palliative care units and 

mobile teams met during two days. During the second 

session, 5 nurses and 5 physicians working at an 

academic level completed the results of the first 

workshop, strengthening domains relating to 

research, education, quality and policy. At the third 

meeting 3 psychologists, 3 social workers, 1 chaplain 

and 4 art therapists met during two days and 

constructed their repository based on the previous 

documents. All sessions were supervised by 

international experts representing each 

profession.These workshops were facilitated by two 

project managers in palliative care trained in the 

DACUM (Developing a Curriculum) methodology. It 

is an occupational analysis where specialists in a field 

discuss their activities oriented by the facilitators 

helping them structuring the described tasks in major 

domains, general tasks and steps (specific tasks). This 

method provides a faithful and organized picture of a 

field of expertise, at a specific time and location. It has 

the advantage of not getting a purely theoretical 

result, but to reflect real practices. The three sessions 

have resulted in two documents, one for the nurses 

and physicians, the second for the other professions. 

Both are constructed on the same 20 domains. The 

nurses and physicians’ catalogue contains 64 general 

tasks and 350 steps; the catalogue of the other 

professions lists 91 general tasks and 530 steps. The 

41 

Parallel sessions



strength of the process lies in the fact that we now 

have a comprehensive picture of the Swiss 

competencies in palliative care, enriched by the 

international experts and guidelines. Through its 

method based on the consensus, the process in itself 

has nurtured the national dynamic and reinforced the 

cohesion of the palliative care community. We faced 

many challenges during the process. Practices are very 

heterogeneous across the country and it has been 

difficult to reflect national competencies 

representatively. Then, experts in the psycho-social 

field are scarce and they encountered difficulties in 

describing and structuring their activities, although 

they clearly demonstrated their experience and 

professional competences. This is possibly due to the 

fact that these professionals have learned a lot by 

doing, as formal teaching in this field is still under 

development in our country. Translating their activity 

into a DACUM vocabulary has also been complex, as 

they rely less on concrete or technical activities and 

more on attitudes and interpersonal skills. These 

limits reflect the history of palliative care in 

Switzerland: until 2009 the development of palliative 

care occurred from bottom up without a coordinated 

political willingness. Future development of the 

project is to disseminate the catalogues, in 

coordination with the professional associations and 

the national strategy. 


Meet the expert 

sessions 

Palliative Care in Long-Term Care Settings for Older People 44 

How to Create a Palliative Care Programme? 44 

Measures for Improved Access to Opioid Medication in Europe 44 

How to Get Informed About Palliative Care: Needs Assessment in Central and 

Eastern Europe 44 

Supporting Family Carers 44 

Palliative Care in COPD and Heart Failure 45 

Physiotherapy in Palliative Care 45 

The Development of Guidelines and a Core Curriculum for the Palliative Care for 

People with Neurological Disease 45 

Evidence-Based Treatment of Cachexia 45 

The Art and Science of Social Work 45 

Spiritual Care in Palliative Care 45 

What Can a Psychologist Do for Your Team? 46 



43 

Meet the experts 

sessions


sessions 


Palliative Care in Long-Term Care 

Settings for Older People 

Abstract number: ME1 

Abstract type: Meet the Expert 

Palliative Care in Long Term Care Settings for 

Older People 

Hockley J. 1 , Curiale V. 2 

1 St Christopher’s Hospice, Consultation for Care 

Homes, Sydenham London, United Kingdom, 

2 Galliera Hospital, Gerontologia e Scienze Motorie, 

Genova, Italy 

This session will concentrate on sharing knowledge 

about the changing context in long term care settings 

for older people at the end of life. The European Union 

Geriatric Medicine Society (EUGMS) has recently 

drawn up a definition of Geriatric Palliative Medicine 

(JAGS 2010) that highlights the importance of 

palliative care management for frail older people with 

multiple health related problems from diseases that are 

progressive, incurable, and far advanced - many of 

whom do not have cancer. The ‘meet the expert’ 

session will refer to the tension of the living/dying 

continuum especially seen in long term care settings. 

Quality of life including the appropriate control of 

symptoms is very important. For too long pain and 

other symptoms have been underassessed (because of 

the inability of the person to adequately express the 

severity) and undertreated, causing considerable 

suffering. Will be stressed the importance of 

recognition of advanced non cancer illnesses as 

terminal conditions and will be discussed the issues 

related to the clinical management of older people 

suffering from end stage organ failure or from advanced 

dementia with medical complications. There will be 

opportunity to discuss the different evidence-based 

tools to improve the quality of care in this setting; 

highlighting how these tools have empowered staff to 

take responsibility for end of life care so that 

patients/residents can die being cared for by people 

they know in a familiar surrounding. Many older 

people know they are dying and are more accepting of 

it; they are often more prepared to open up such a 

conversation than many professionals working in this 

setting. Narratives will be shared to highlight this fact. 

Finally, the importance of forming collaborative 

partnerships between mental health, geriatric medicine 

and palliative care will be stressed. The session will draw 

on experience and research that emphasises the 

differences between long term care settings for older 

people and hospices. It is difficult, and potentially 

inappropriate, to impose a model developed for adults 

with cancer on to the care of frail older people. Instead, 

different models as a model of empowerment and 

collaboration across the different specialties and a 

Geriatric-Palliative model, will be explored. 

How to Create a Palliative Care 

Programme? 



Meet-the-Expert Session “How to Create a 

Palliative Care Programme?” 

Capelas M.L. 1 , Powell F.M. 2 

1 Catholic University of Portugal, Institute of Health 

Sciences, Lisboa, Portugal, 2 African Palliative Care 

Association, Managment and Policy, Kampala, 

Uganda 

Palliative care is a Human Right so is an obligation of 

the policy makers and the health professionals who 

work in the development of health resources, to 

improve the accessibility to palliative care services for 

everyone who need of this support. 

To develop and implementing a palliative care 

program with quality, it will be necessary drawn a 

network of different resources or solutions to meet the 

needs of the patients and their families. 

Thus, several steps must be taken in count: 

•To influence (marketing) the policy makers, the 

opinion leaders, directors of institutions, to involve 

the stakeholders to achieve a institutional/political 

commitment ·To influence the population to the 

importance of good quality of care in the en-of-life 

-To choice the model of care 

•Auto-evaluation: strengths, weakness, threats, 

opportunities 

•Estimate the need and to define the public target 

(population to serve) 

•To choice the palliative care service (palliative care 

unit, inpatient hospice, hospital palliative care 

support team, home palliative care team, day 

hospice, volunteer team) ·Education (basic and 

advanced) in Palliative Care for the team members 

•Drugs availability 

•Model of needs assessment and of providing care 

•Sustainability (financial, human, physic structure 

resources, and others) 

For everything that is necessary to have a good 

resilience because the results don’t emerge as soon as 

we, normally want. 

Measures for Improved Access to 

Opioid Medication in Europe 



Measures for Improved Access to Opioid 

Medication in Europe 

Payne S. 1 , Scholten W. 2 


End of Life Care, Lancaster, United Kingdom, 2 World 

Health Organization, Department of Essential 

Medicines and Pharmaceutical Policies, Geneva, 

Switzerland 

Aim: The purpose of this meet-the-expert session is to 

describe the international work being conducted to 

improve access to opioid medication in Europe and to 

invite participants to discuss the issues from their own 

countries. 

Background: There is evidence of considerable 

diversity in the availability and utilisation of opioid 

medicines across European countries. In many 

countries legislation and policy directives are required 

to balance access to opioids with prevention of misuse 

and dependence. 

Methods: ATOME (Access to Opioid Medication in 

Europe) is an EU-funded project for the improvement 

of access to opioids for medical and scientific use in 12 

eastern European countries. The development of 

guidelines Ensuring Balance in National Policies on 

Substance Control (now published by WHO) was a 

fundamental starting point. To ensure that they were 

rigorously grounded in best practice, a Delphi 

consensus procedure was undertaken during 2010. 

This process revealed both the commonalities and the 

divergence of views in experts. 

Next, the ATOME Project will review national policies 

and legislation, and make recommendations to the 

Ministers of Health. In each target country, a national 

symposium will be organised for generating support 

for improved access to controlled medicines, 

including opioid medicines. 

Discussion: This session will suggested a number of 

ways to improve access to opioid medication in 

Europe and will indicated that local links between 

national associations and policy makers are 

developing rapidly. 

How to Get Informed About Palliative 

Care: Needs Assessment in Central 

and Eastern Europe 



How to Get Informed About Palliative Care: 

Needs Assessment in Central and Eastern 

Europe 

Jünger S. 1 , Vvedenskaya E. 2 , Hegedus K. 3 , Klose J. 4 , 

Callaway M. 5 , Radbruch L. 4,6 


Medicine, Aachen, Germany, 2 State Medical 

University, Regional Society for Palliative Care, 

Nizhny Novgorod, Russian Federation, 3 Semmelweis 

University, Institute of Behavioral Sciences, Budapest, 

Hungary, 4 University of Bonn, Department of 

Palliative Medicine, Bonn, Germany, 5 Open Society 

Foundations, International Palliative Care Initiative, 

New York, NY, United States, 6 Malteser Hospital 

Bonn/ Rhein-Sieg, Centre for Palliative Medicine, 

Bonn, Germany 

Palliative care is quite a new field of health care. It has 

been developing in Western Europe for about 45 years 

but it is still a challenge. In the countries of Central 

and Eastern Europe (CEE) palliative care started later 

and its development is more complicated. There is 

still a lack of comprehensive information in many of 

these countries which inhibits palliative care 

development. Access to up-to-date information and 

communication with leading European clinics and 

colleagues are restricted due to financial problems and 

language barriers. To ease the access to international 

information resources for specialists from CEE the 

European Association for Palliative Care (EAPC) starts 

a large project in Russian. To ensure that new 

resources will match the needs of the users, the EAPC 

is undertaking a survey on palliative care information 

needs in 28 target countries in CEE (supported by the 

Open Society Foundations). The aim of this survey is 

to assess the information needs of specialists involved 

in palliative/hospice care in the target region. 

Information needs are being assessed with a 

combination of quantitative and qualitative methods. 

A self-reporting survey aims to reach a broad range of 

professionals involved in palliative care. The survey is 

being performed in collaboration with the national 

associations. Interviews and focus groups will be 

undertaken with selected representatives in order to 

get in-depth information and a more profound 

understanding of the national backgrounds and the 

potential barriers to information access. The results of 

the survey will allow for a targeted planning of the 

information provision and dissemination strategies to 

support further palliative care development in CEE. 

First results and conclusions will be shared with the 

congress participants. There will be the opportunity 

for discussion and exchange about experiences and 

suggestions for a targeted approach to better 

accessibility of palliative care information. 

Supporting Family Carers 



Supporting Family Carers 

Firth P.H. 1 

1 Free lance, St Albans, United Kingdom 

Introduction: Family Carers will be defined as any 

person who the patients wishes to be designated as 

their family.. There is both anecdotal and research 

evidence to demonstrate the real need to provide a 

range of different support mechanisms to support 

carers 

.In July 2010 the National End of Life Care 

Programme Board UK produced the Social Care 

Framework. The author was part of the advisory team 

who wrote the document and some of that work will 

be discussed.. Although this presentation will 

examine some of the support provision in the UK the 

author will partcularly focus on her clinical practice in 

offering a range of family focussed interventions and 

in the vital work in liaising, consulting and educating 

social care staff. 

Aims: (1)To briefly look at the range of interventions 

for carers in the hospice sector and to show how 

government policy has focussed attention on the 

need for all carers to receive support as part of the End 

of Life Care Strategy. this will include group work 

interventions of differing types. 

(2) To demonstrate the value of family focussed 

interventions 

(3) To show how a systems theory and mediation 

model can help patients and families 

(4) To show how the palliative care social worker has a 

big role to play in this area of work. 

Method: The author will describe her work using case 

examples. These will include some agreed quotes from 

families about their experiences.Many carers are 

elderly themselves and suffer from health problems 

which accoding to demographics will only become a 

bigger factor when considering services. Therefore the 

need for health and social care agencies to work 

together is crucial. The palliative care social worker 

role is vital in helping to bridge the gaps between 

health and social care systems.This can be done in 

two ways, consultancy and education. 

Some examples of education to staff in sheltered 

housing will be used to show what can be acheived 

particularly in helping care and housing staff 

understand the issues around death and dying and 

communicate better with family carers. 

Conclusion: The needs of family carers are often 

practical, financial, psychosocial physical and 

spiritual. There are many ways to offer suoport. Two 

ways in particular are adressed 


Palliative Care in COPD and 

Heart Failure 



Meet the Expert: Palliative Care in COPD and 

Heart Failure 

Bausewein C. 1 , Murray S. 2 


London, United Kingdom, 2 University of Edinburgh, 

General Practice Section Centre for Population Health 

Sciences, Edinburgh, United Kingdom 

There is a recognized need to expand palliative care 

beyond cancer to patients with advanced disease 

irrespective of diagnosis. COPD and chronic heart 

failure are two typical conditions representing 

patients with organ failure. Both conditions are not 

necessarily linked to death and dying by patients and 

carers, in fact patients learn to adapt to the lifelong 

condition. Nevertheless, it has been shown that 

symptom burden and palliative care needs for both 

conditions are as high as in cancer patients but that 

disease trajectories may differ from those with cancer. 

Prognosis is challenging in both groups and more 

difficult to establish compared to the cancer 

population. Thus, the best palliative care models for 

these patient groups have still to be determined. 

In this short session we will have a discussion around 

the following questions: 

What are the needs of people (and their family carers) 

with COPD and heart failure. Are there typical 

trajectories of physical, social and psychological 

needs? 

What care do people with COPD and heart failure 

want? When? Where? From whom? 

How can services best be organized to meet patients’ 

and family needs? How can services be configured to 

prevent distress, deal with acute exacerbations, and 

prevent excessive medical treatment? 

Physiotherapy in Palliative Care 



Meet the Expert: Physiotherapy 

in Palliative Care 

Taylor J.M. 1 , Simader R. 2 

1 St Christophers Hospice, Physiotherapy, London, 

United Kingdom, 2 St Christophers Hospice, London, 


The role of the physiotherapist in palliative care is an 

evolving one which in recent years has needed to 

embrace the current climate of survivorship. While 

continuing to maintain the core skills (including 

therapeutic exercise, functional rehabilitation, 

lymphoedema management , electrophysical and 

heat/cold therapies, respiratory techniques and 

relaxation), more open and interactive attitudes are 

now reflected. Higher expectations of patient quality 

of life and more readiness to access the unique skills of 

the physiotherapist have combined to shift the focus 

from a symptom- driven model to a more subjective 

and problem-focused approach which can deliver an 

attractive, mutually supportive and empowering 

range of interventions. While addressing the complex 

rehabilitation challenges presented in end of life care, 

the development of broader strategies to manage deconditioning 

and dependence throughout a longer 

disease trajectory will place the palliative care 

physiotherapist in an even stronger position at the 

heart of the service delivery of the multi-professional 

team. This session will encourage networking, debate 

and sharing of ideas of all the varied treatment 

programmes being implemented throughout Europe 

and beyond in these innovative times. 

The Development of Guidelines 

and a Core Curriculum for the 

Palliative Care for People with 

Neurological Disease 



Meet the Expert Session – Development of 

Guidelines and a Core Curriculum for 

Palliative Care for People with Neurological 

Disease 

Oliver D. 1 , Voltz R. 2 , Borasio G.D. 3 , Caraceni A. 4 , EAPC 

Taskforce on the development of guidelines and a core 

curriculum for the pallaitive care of people with 

neurological disease 

1 University of Kent, Centre for Professional Practice, 

Chatham, United Kingdom, 2 Klinikum der 

Universität zu Köln, Klinik und Poliklinik für 

Palliativmedizin, Köln, Germany, 3 University of 

Lausanne, Centre Hospitalier Universitare Vaudois, 

Lausanne, Switzerland, 4 Istituto Nazionale Dei 

Tumori, Rehabilitation and Palliative Care Unit, 

Milano, Italy 

The EAPC Taskforce for neurological palliative care 

has been formed to look at: 

· The development of guidelines for palliative care for 

people with neurological disease, primarily: 

Amyotrophic lateral sclerosis 

Multiple sclerosis 

Parkinson’s disease 

Huntington’s disease 

Stroke. 

These guidelines would provide an evidence based 

approach to palliative care and would be for both 

neurologists, to encourage palliative care approach 

throughout the disease progression and for palliative 

care providers, as they become involved 

· A curriculum for professionals involved in the care of 

people with neurological disease: 

Neurologists 

Palliative care professionals. 

This would enable professionals throughout the 

person’s care pathway to be aware of palliative care 

and mange their care more appropriately 

The Taskforce members will be able to discuss the 

development of the guidelines and the curriculum 

and will present the work in progress. Participants in 

the workshop will be able to share their experiences 

and ideas for the improvement of palliative care for 

people with neurological disease. The members of the 

taskforce are; 

David Oliver, Rochester, UK (Chair) 

Gian Domenico Borasio, Lausanne 

Raymond Voltz, Cologne, Germany 

Stefan Lorenzl, Munich, Germany 

Rachel Burman, London, UK 

Augusto Caraceni, Milan, Italy 

Daniela Tarquini, Rome, Italy 

Marianne de Visser, Netherlands 

Evidence-Based Treatment 

of Cachexia 



Evidence-Based Treatment of Cachexia 

Kaasa S. 1 , Strasser F. 2 

1 St. Olavs Hospital, Palliative Medicine Unit, 

Trondheim, Norway, 2 Cantonal Hospital St.Gallen, 

Oncological Palliative Medicine, St.Gallen, 

Switzerland 

Cancer Cachexia impacts patients and family 

members during the trajectory of advanced cancer 

through many symptoms, psychosocial distress, and 

decline in physical and organ functions. Recently an 

internationally accepted (Argiles J et al. J Am Med Dir 

Assoc 2010;11:229-30) new definition, diagnostic 

criteria and classification of cancer cachexia was 

published (Fearon K & Strasser F, et al. Lancet Oncology 

2011 Feb 4 th ), a result of the EPCRC, based on 

systematic literature reviews, patient interviews and 

consensual (Delphi) processes. 

Both the interpretation of published evidence for the 

treatment of cancer cachexia and the design of new 

clinical trials merits consideration of the new key 

concepts and EPCRC-guidelines of cancer cachexia: a) 

cachexia phases (early cachexia, cachexia syndrome, 



refractory cachexia), b) cachexia diagnosis and 

assessment (storage, intake, catabolic drive/potential, 

performance/function), c) cachexia severity (BMI, 

weight loss), and d) cachexia phenotypes 

(predominant anorexia and decreased food intake, 

sarcopenia / muscle loss, inflammation). 

The meet-the-expert-session will focus on: 

1. Clinical assessment of cancer cachexia patients 

(primary/secondary, considering both intake and 

catabolism, muscle not [only] weight) and clinical 

implications to guide multidimensional interventions 

(nutrition, physical function, psychosocial, anticachexia 

drugs). 

2. How to define and interpret clinical meaningful 

outcomes (which, how and when to measure) in all 3 

cachexia phases. 

3. Multidimensional cachexia treatment in clinical 

care and within clinical trials. 

4. A brief outlook which clinical trials are “cooking”. 

The Art and Science of Social Work 



The Art and Science of Social Work 

Oliviere D. 1 , Firth P. 2 

1 St Christopher’s Hospice, Education Centre, London, 

United Kingdom, 2 Isabel Hospice, Family Support 

Team, Hertfordshire, United Kingdom 

In a changing global environment, with palliative and 

end of life care offered in a variety of settings, resource 

restrictions, increasing regulation, the challenge to 

define professional roles and competence is even 

more important. The Social Work Taskforce was 

accelerated and informed by the gathering of social 

workers and other professionals meeting at the EAPC 

Congress in Vienna in 2009. It was agreed that wide 

international input was valued, building on the 

competency work in Ireland, the USA, Canada, Spain 

and Sweden. 

The session will aim to overview work in progress on 

the Taskforce on Social Work skills and competencies 

and to set up workstreams focussing, e.g, on the core 

content of specialist training, . The meeting will draw 

on the experience of participants working in 

psychosocial care in both palliative and end of life 

care settings. 

The stated aims and objectives of the Taskforce are: 

to offer leadership to palliative care social workers in 

End of Life and Palliative Care across Europe 

to agree a set of competencies 

to examine the skills needed 

to look at the provision of specialist training 

to encourage the formation of country wide groups 

which can link up with the Taskforce 

The Taskforce welcomes working links with the other 

EAPC Taskforces relating to the psychosocial focus to 

integrate knowledge and skills for the benefit of 

patients and their families. 

Spiritual Care in Palliative Care 



Meet-the-Expert: Spiritual Care 

Leget C. 1 , Benito E. 2 , Roser T. 3 , Nolan S. 4 

1 Tilburg University, Tilburg, Netherlands, 2 Spanish 

Society of Palliative Care (SECPAL), Mallorca, Spain, 

3 University of Munich, Munich, Germany, 4 Princess 

Alice Hospice, Esher, United Kingdom 

Spiritual care is seen as one the four main areas of 

attention according to the WHO-definition of 

palliative care. Despite the exponential growth of the 

amount of (scientific) literature on the subject, the 

development of spiritual care in palliative care is still 

in its initial phase. One of the challenging 

characteristics of spiritual care is the fact that it is 

embedded in and determined by the local culture in 

which palliative care takes place. From a European 

perspective this means that one can find both diverse 

and common problems and challenges for the next 

decade. In this session three experts from different 

areas in Europe (Germany, Spain and the UK) will give 

short presentations on the developments and 

characteristics of spiritual care in their country, 

followed by a discussion with the participants. The 

aims of this session is to learn from each other’s 

45 


sessions


sessions 


experiences and to identify common interests and 

possibilities of collaboration. This session is organized 

by the Taskforce Spiritual Care, which will be 

launched at the conference. 

What Can a Psychologist 

Do for your Team? 



What Can a Psychologist do for Your Team? 

Jünger S. 1 , Travado L. 2 , Payne S. 3 


Medicine, Aachen, Germany, 2 Central Lisbon 

Hospital Centre, Hospital de S. José, Clinical 

Psychology Unit, Lisbon, Portugal, 3 Lancaster 

University, Division of Health Research, International 

Observatory on End of Life Care, Lancaster, United 


A Europe-wide survey among psychologists involved 

in palliative care has revealed that one of the major 

challenges perceived by the respondents is their work 

in a multiprofessional team. Overall, there seems to be 

a considerable uncertainty as to what psychologists 

can contribute to the work of a palliative care team. 

On the one hand, there is evidence of a lack of 

acknowledgement of a psychological perspective in 

palliative care, as well as a lack of respect regarding the 

psychologist’s role and contribution to the team. On 

the other hand, psychologists are confronted with 

high - sometimes unrealistic - expectations regarding 

the effect of their work on patients and their relatives. 

This can complicate the psychologists’ work, for 

example because of their late involvement in the 

course of the therapy planning, or because of a work 

climate that does not appreciate an integrative patient 

approach. 

One important way to facilitate collaboration of 

different professions involved in palliative care will be 

information and transparency regarding the 

professional profile, the core competences, the 

opportunities and the limitations of each profession. 

Therefore, exchange with psychologists experienced 

in the area of palliative care can provide an important 

contribution to more transparency and openness 

with regard to the role of psychologists in palliative 

care. The aim of this “meet the expert” session is to 

improve the understanding of the skills and the 

expertise of psychologists, and of what they can 

contribute to multidisciplinary palliative care teams. 

Representatives of different professions working in a 

palliative care team such as physicians, nurses, 

physiotherapists or occupational therapists are 

invited to share their experiences and ideas. Also 

young psychologists or those who are only recently 

involved in palliative care can benefit from this 

exchange. 


Assessment and Measurement Tools 48 

Psychology and Communication 49 

End of Life Care II 50 

Ethics II 51 

Research Methodology 52 

Pain 53 

Family and Caregivers 55 

Symptom Management 56 

Ethics I 57 

End of Life Care I 58 

Life Span 59 

Bereavement 61 

Policy 62 

Organisation of Services 63 


Free communication sessions 

Free communication 

sessions 

47 

Free 

communication 

sessions

Free 

communication 

sessions 


Free Communication – Assessment 

and Measurement Tools 

Abstract number: FC1.1 

Abstract type: Oral 

The Measurement of Spirituality in Palliative 

Care: A Systematic Review Identifying and 

Appraising Tools Validated Cross-culturally 

Selman L. 1 , Harding R. 1 , Gysels M. 2 , Speck P. 1 , Siegert R. 1 , 

Higginson I.J. 1 

1 King’s College London, Palliative Care, Policy & 

Rehabilitation, London, United Kingdom, 2 University 

of Barcelona, Barcelona Centre for International 

Health Research (CRESIB), Barcelona, Spain 

Aims: To identify and categorise spiritual outcome 

measures validated in advanced cancer, HIV or 

palliative care populations, assess tools’ cross-cultural 

applicability and, for those measures validated crossculturally, 

appraise their psychometric properties and 

multi-faith appropriateness. 

Design: Systematic review. 

Methods: 8 databases were searched to identify 

relevant validation and research studies, using search 

terms in 3 categories: palliative care, spirituality, and 

outcome measurement. Tools were evaluated 

according to 2 criteria: 

(1) Validation in advanced cancer, HIV or palliative 

care; 

(2) Validation in an ethnically diverse context. 

Tools that met criterion 1 were categorised by type. 

Tools that also met criterion 2 were appraised with 

respect to psychometric properties (validity, 

reproducibility, responsiveness and interpretability), 

multi-faith appropriateness and time to complete. 

Results: 191 papers were identified, yielding 85 tools. 

55 tools met criterion 1: general multi-dimensional 

measures (n=38), functional measures (n=11) and 

substantive measures (n=6). 26 tools (representing 4 

families of measures (WHOQOL-HIV, POS, MVQOLI 

and MQOL) and 5 individual tools) met criterion 2; of 

these, adequate psychometric properties were found 

as follows: content validity (n=24), internal 

consistency (n=12), construct validity (n=8), testretest 

reliability (n=7), responsiveness (n=2), and 

interpretability (n=2). 8 tools had been tested in 

multi-faith populations. 

Conclusion: The clinical and cultural population in 

which spiritual instruments have been validated 

should be taken into account when selecting an 

appropriate measure for research purposes. At present 

the MQOL, QUAL-E, and POS are the most 

appropriate multi-dimensional measures containing 

spiritual items for use in multi-cultural palliative care 

populations. However, none of these measures score 

perfectly on all psychometric criteria, and their multifaith 

appropriateness requires further testing. 



An Examination of Opioid Consumption in 

the International Pain Policy Fellows’ 

Countries: The Morphine Equivalence Metric 

Maurer M.A. 1 , Ryan K.M. 1 , Cleary J.F. 1 , Gilson A.M. 1 , 

O’Brien M. 2 , Lohman D. 3 , Thomas L. 3 

1 University of Wisconsin, Pain & Policy Studies 

Group, Madison, WI, United States, 2 Union for 

International Cancer Control and American Cancer 

Society, Global Access to Pain Relief Initiative, 

Washington D.C., DC, United States, 3 Human Rights 

Watch, Health and Human Rights Division, New 

York, NY, United States 

Aims: Health professionals from 9 developing 

countries were awarded International Pain Policy 

Fellowships to work with governments and remove 

barriers to patient access to opioids for pain relief and 

palliative care. A country’s annual consumption of 

opioids is one indicator of availability and 

accessibility of medicines for severe pain. This study is 

designed to characterize opioid consumption in the 

Fellows’ countries by calculating a morphine 

equivalence (ME) metric, which represents the total 

consumption of several opioids and allows for 

equianalgesic comparisons among countries. 

Methods: Applying conversion factors (from the 

World Health Organization Collaborating Center for 

Drugs Statistics Methodology) to governmentreported 

opioid consumption data (from the 

International Narcotics Control Board) creates an ME 

metric for several principal opioids used to treat severe 

pain. Descriptive analyses were used to compare each 

country’s ME opioid consumption from 1999 to 2008. 

Results: Globally, opioid ME consumption more 

than doubled in the10-year period. Colombia’s ME 

consumption doubled, while Georgia and Vietnam 

had increases of 6 and 17-fold respectively. Guatemala 

and Kenya’s increases were less than two-fold and ME 

consumption decreased in the other 4 countries. Of 

the 9 countries, the ME consumption in Guatemala, 

Kenya, Nepal, Sierra Leone and Vietnam fell below the 

global median, while the other countries were above 

the median. However, the global median ME 

consumption was low (3 mg/capita in 2008) 

compared with the median for high-income countries 

(120 mg/capita in 2008). 

Conclusion: Using the ME metric to characterize 

opioid access in a country, the authors found that 

while ME consumption has increased at an impressive 

rate in some of the study countries, overall, it has been 

strikingly low in the study countries during the study 

period when compared with high-income countries. 

Acknowledgement: Lance Armstrong Foundation 

and Open Society Institute 



Is Measuring Spiritual Wellbeing also an 

Intervention? Findings from UK Pilot-testing 

of the EORTC QLQ-SWB38 

Vivat B. 1 , EORTC Quality of Life Group 

1 Brunel University, Health Sciences and Social Care, 

Uxbridge, United Kingdom 

Background: The EORTC Quality of Life Group is 

developing a spiritual wellbeing (SWB) measure for 

palliative care patients with cancer. Spiritual care is 

often understood as accompanying someone as they 

seek to find meaning in what is happening to them. 

Measurement and intervention in this area are 

therefore not clearly separate, since asking about 

spiritual issues stimulates reflection on those issues. 

This theoretical position implies that the final 

measure will function as both a measurement and a 

discussion tool. This paper considers whether data 

from pilot-testing the QLQ-SWB38 version of the 

measure in the UK supports this understanding. 

Method: 3 phases of developing the measure have 

been completed. Phase I identified relevant issues. 

Phase II operationalised issues into items. Phase III 

pilot-tested the items. In phase I interviews, patient 

respondents in the UK demonstrated that they 

wanted to talk about those issues they had identified 

as important, i.e. they used the issues as starting 

points for discussion. To explore this finding in more 

depth, phase III debriefing interviews with patients in 

the UK were tape-recorded, transcribed and 

qualitatively analysed. 

Results: All participants understood that the purpose 

of the study was specifically to pilot-test proposed 

items for the measure, but they all also used the 

debriefing interviews to some extent as an 

opportunity to discuss and reflect on the issues 

addressed. One participant stated that the items in the 

measure were not difficult or intrusive, but rather 

contemplative, since they meant: “Having to think 

consciously about things which are anyway at the 

back of my mind.” Another said simply: “Thank you 

for listening to me.” 

Conclusion: Data from UK pilot-testing of the 

EORTC QLQ-SWB38 seem to support the theoretical 

understanding that asking about SWB is of itself an 

intervention. These findings from the pilot-testing are 

being explored further in the field-testing of the 

measure which is currently ongoing. 



From Initial Request to Needs´ Identification: 

A Challenge for Palliative Care Mobile Teams 

Marcoux I. 1 , Rochedreux A. 2 , Garnier P.-H. 2 , Papillon B. 2 

1 University of Ottawa, Interdisciplinary School of 

Health Sciences, Ottawa, ON, Canada, 2 CHU Nantes, 

Nantes, France 

Research aims: The challenges faced by Palliative 

Care Mobile Teams (PCMT) require them to adapt 

very quickly to unique and complex situations in 

which they must intervene. The purpose of this study 

was to better understand differences between calls’ 

motive and subsequent needs as evaluated by the 

PCMT. The ultimate objective is to develop new tools 

in order to improve interventions devoted to 

concerned people. 

Study design and methods: We conducted a 

prospective study of 260 consecutive calls received by 

PCMT. Reason of the initial call and identified needs 

as evaluated by the PCMT at the end of the 

intervention were recorded. We used validated 

instruments (e.g. Edmonton Symptoms Assessment 

Scale) and developed our own observation grid 

through focus group/consultation with four PCMT. 

Criteria used to describe each situation included: 

(1) physical and psychological symptoms of the 

patient ; moral, psychological, interpersonal 

difficulties related to 

(2) the loved ones and 

(3) the treating medical team; 

(4) ethical dilemmas. The observation grid were 

pretested with 50 patients. 

Results: Preliminary analyses revealed that calls’ 

motive and subsequent identified needs are 

consistent with regard to pain [F(1,259)=2,1; p=0,15] 

and ethical dilemmas F(1,259)=0,8; p=0,37]. However, 

some problems tended to be underestimated, such as 

moral and psychological problems related to the 

patient and the loved ones [F(1,259)=47,2; p< 0,0001], 

but also interpersonal problems between the patient, 

the loved ones, and/or the treating medical team 

[F(1,259)=48,9; p< 0,0001]. More detailed analyses 

will be presented to better understand the complexity 

of involved situations. 

Conclusion: Simple but adaptative tools for daily 

interventions of PCMT are needed. These present a 

real challenge if we want to capture the complexity of 

interrelated situations involving multiple actors at the 

end of life. 



Comparing the Accuracy of Four Methods to 

Predict Survival in Terminally Ill Patients 

Referred to a Hospital-based Palliative 

Medicine Team 

Tavares F.A. 1 

1 Centro Hospitalar Lisboa Norte, EPE - Hospital de 

Santa Maria, Unidade de Medicina Paliativa, Lisboa, 

Portugal 

Physicians cannot avoid facing requests from patients 

and relatives for individual prediction of residual 

lifetime after the diagnosis of a potentially terminal 

condition. 

Aim: To compare the accuracy and applicability to 

advanced solid cancer patients of four prognostic 

tools - the clinician’s prediction of survival (CPS), the 

Palliative Performance Scale (PPS), the Palliative 

Prognostic Index (PPI) and the Palliative Prognostic 

Score (PaP). 

Methods: Observational, prospective, cohort study. 

All advanced solid cancer patients admitted during an 

18-month period by a hospital-based palliative care 

team at a Portuguese tertiary, university centre were 

recruited. On first visit CPS, demographic and clinical 

data concerning other predictive tools were collected. 

Survival analysis was performed to compare the 

accuracy of the tools. The clinical appropriateness of 

estimations was also considered. 

Results: 341 patients were included (58% male, 

median age 67 years, 46% digestive tumours, 51% 

hospitalized, median survival 26 days). All tools 

showed good survival discrimination. CPS had the 

strongest correlation with survival but only 2 out of 5 

estimates were correct about the week of death. 

Overpessimistic estimates were the most frequent 

error with CPS. Methods of actuarial estimation of 

survival also failed to prevent prognostic errors, 

particularly pessimistic ones. PaP was slightly more 

accurate than PPI (78% vs. 69%). Both tools correlated 

highly in their prognostication but they correlated 

even better with CPS. Regardless of the tools, clinically 

inadequate estimations were more frequent for 

intermediate prognosis. 

Conclusions: Too frequently PPS provided 

unreliable predictive information so it should be used 

with caution as a sole prognostic model. Our study 

adds evidence that more accurate prognostication is 

feasible and can be achieved by combining clinical 

experience and PaP or PPI. 




The Measurement of Extrapyramidal Side 

Effects (EPS) in Palliative Care Patients 

Bush S.H. 1,2,3 , Pereira J. 1,2,3 

1 University of Ottawa, Department of Medicine, 

Ottawa, ON, Canada, 2 Élisabeth Bruyère Research 

Institute, Ottawa, ON, Canada, 3 Bruyère Continuing 

Care, Department of Palliative Care, Ottawa, ON, 

Canada 

The incidence and prevalence of extrapyramidal side 

effects (EPS) in palliative care is unknown and has not 

been systematically studied. One of the challenges is 

the absence of screening instruments specific to 

palliative care patients. 

Palliative care patients are frequently treated with 

anti-dopaminergic medications such as 

metoclopramide (first-line management for nausea) 

and haloperidol (first-line management for delirium). 

However, these medications may cause 

extrapyramidal side effects (EPS) including acute 

dystonias, acute akathisia and drug induced 

parkinsonism. EPS is often under recognized. Regular 

use of a reliable EPS screening instrument would help 

to ensure that the symptoms of EPS are not missed 

and assist in improving patient care. 

This presentation will examine the epidemiology, 

pathophysiology, predictors and clinical 

characteristics of EPS. A summary of instruments used 

for the assessment of EPS derived from psychiatry and 

movement disorder literature will be provided. None 

have been validated in the palliative care patient 

population and their limitations for use in patients at 

the end of life will be discussed. 

Free Communication – Psychology 

and Communication 



Researching Sexuality in Cancer Patients and 

their Partners. Findings from a Binational 

Study 

Roser T.D. 1,2 , MacKinnon C. 3,4,5 , Wasner M. 1,6 , Pfleger M. 1 , 

Cohen R.S. 3,4 

1 Ludwig Maximilians University, Interdisciplinary 

Center for Palliative Care, Munich, Germany, 

2 Collegium Augustinum GmbH, Augustinum Pflege 

Gesellschaft, Munich, Germany, 3 McGill University, 

Montreal, QC, Canada, 4 Jewish General Hospital, 

Montreal, QC, Canada, 5 McGill University Health 

Center, Montreal, QC, Canada, 6 Catholic University 

of Applied Science, Munich, Germany 

Background: Research has shown the diversity, 

importance, and changes of sexuality at the end of life 

for both patients and partners. 

Goals: The objectives of the present study included 

exploring patients’ and partners’ definition of 

sexuality, identifying changes in understanding and 

experience of sexuality, as well as assessing desired 

support from health care providers (HCP). 

Methods: In this multi-centered study, 34 patients 

and partners were recruited from two inpatient 

palliative care (PC) units in Montreal (Canada) and 

Munich (Germany) as well as an outpatient setting in 

rural Germany (GER 25, CAN 9; 27 patients, 7 

partners; age: 31-86 yrs, 24 in a partnership, 3 

homosexual). Patients with advanced cancer and 

their partners were interviewed separately using a 

semi-structured interview guide. An interpretative 

descriptive analysis was used to identify convergent 

and divergent themes. 

Results: During analysis, five themes emerged. First, 

the definitions of sexuality tended towards either 

reductionist or expansive understandings (strictly 

sexual intercourse (SI) to diverse experiential and 

relational aspects). Participants with a reductionist 

understanding reported a loss of QoL while those with 

expansive understanding reported stable or increasing 

QoL. Second, the importance of SI was often 

diminished with some reporting intense loss. Third, 

changes in experience included treatment- and 

illness-related alterations, psychological aspects, 

partner’s behavior, or a slow continuous decrease due 

to illness or ageing. Fourth, while most were never 

approached by HCPs, many report a desire for HCP to 

be proactive in addressing sexual topics early in the 

course of the illness. Finally, many participants 

discussed their sexuality within the broad context of 

their life story. 

Implications: The proposed presentation will 

conclude by identifying competencies for HCPs when 

negotiating sexual issues with patients at the end of 

life. 



Psychological Consequences of Patient Asaults 

on Mental Health of Staff Memembers on a 

Palliative Care Unit - A Retrospective and 

Prospective Evaluation 

Lorenzl S. 1 , Abright C. 2 

1 University of Munich, Palliative Care, Munich, 

Germany, 2 University of Munich, Department of 

Palliative Care and Neurology, Munich, Germany 

Introduction: Psychological consequences of 

patient assaults on staff members have rarely been in 

the research focus and have never been investigated 

or reported in palliative care. This might imply that it 

is not happening but it might also imply that systems 

for reporting these assaults are not established in 


We therefore have been interested how often patient 

assault happen on a palliative care unit and 

investigated the psychological consequences for the 

team. 

Methods: We conducted a retrospective study for the 

years 2007- 2009 and started a prospective study since 

January 2010. All members of the palliative care team 

were interviewed with standardized questionaires and 

we were using validated instruments for PTSD 

research (PCL-C, IES-R) 

Results: We have documented 4 patient assaults in 

the retrospective part of our study and only one of the 

respondents fulfilled the criteria for PTSD. In the 

prospective study there has been no report of patient 

assaults so far. Patient assaults were only reported 

from female nurses and no other staff members. 

Patient assaults are often neglected in the seriously ill 

patients, even in case it has been a clear assault. 

Conclusion: Patient assaults are relatively rare in 

palliative care teams but must be followed seriously 

since we have seen at least the development of PTSD 

in one member of the palliative care team. Since 

patients are severly ill, the palliative care team might 

displace assaults. However, serious psychological 

consequences can appear and therefore institutions 

need to organize adequate care for their staff affected 

by assaults. 



Fear of Death and Humour - Comic Elements 

in Film Art. Bob Fosse: All That Jazz 

Zana A. 1 , Zana K. 2 , Hegedus K. 3 

1 Semmelweis University, Institute of Behavioural 

Sciences, Budapest, Hungary, 2 Sanofi-Aventis Incl., 

Budapest, Hungary, 3 Semmelweis University, 

Budapest, Hungary 

Research aims: The representation of death and 

dying has a prominent role in visual media. We have 

selected a scene from „All That Jazz”, a film of Bob 

Fosse, in order to analyse the relationship between the 

attitude towards death, fear of death and humour. 

Study design and method: On the one hand, the 

scene presents faithfully and professionally the phases 

of dying described by Kübler-Ross (denial, anger, 

bargaining, depression, acceptance). On the other 

hand, further layers can be discovered once the scene 

is examined. What really makes this film a work of art 

is that it creates emotions and generates thoughts in 

viewers on several levels. It combines humour, irony 

and tragedy. We attempt to investigate how humour 

and fear of death are connected in the selected scene. 

Why do we laugh about something sad and tragic? 

What are we laughing about, or what are we laughing 

at, ridiculing? What lays behind this laugh triggered 

by the anxiety induced by fear of death? 

Results and conclusion: The comedian in the film 

becomes hilarious, and the more so he becomes, the 

more relieved and louder the audience laugh, as if the 

audience in the film melted in one great laughter. 

This „relief” may be the key. We attempt to 

contemplate this phenomenon considering the views 

of Freud, Ferenczi and other authors, with reference to 

such a great masterpiece that can present both 

humour and the anxiety induced by fear of death. 





What Types of Cancer Support Groups Do 

Patients Find Most Useful? 

Grande G. 1 , Arnott J. 1 , Missing C. 1 

1 University of Manchester, School of Nursing, 

Midwifery & Social Work, Manchester, United 


Aims: RCTs have shown that patients benefit from 

cancer support groups, but groups differ in content 

and format and different types may benefit different 

patients. Study aims were to identify the group 

formats that patients saw as most useful and 

investigate factors related to differences in preference. 

Study design: Cross-sectional study. 

Sample: 192 patients with colorectal (Dukes C&D) 

(105), lung (57) or bladder cancer (30) recruited from 

oncology outpatient clinics. 

Data collection: self completed questionnaires 

including demographic variables, social support, 

perceived control and distress over cancer, coping 

strategies, perceived usefulness of different types of 

groups (questionnaire designed from qualitative 

patient interviews). 

Analysis: Factor analysis of group preferences, 

ANOVA and Spearman’s correlations to investigate 

relationships. 

Results: The groups that most patients saw as useful 

were those providing information and advice (77%) 

and groups led by a health professional (70%). Smaller 

percentages (< 50%) endorsed other group formats 

such as groups for socialisation and relaxation, 

emotional support or telephone support. The least 

useful groups were those providing internet support 

(30%). While patients were fairly uniform in seeing 

professionally led groups providing information and 

advice as useful, there was most division of opinion 

over patient led groups providing emotional and 

social support. Main variables predicting preference 

for the latter type of group was worse physical and 

emotional functioning, and greater use of distraction 

and denial to cope, but also more use of active coping. 

Conclusion: It is important to ensure that patient 

have access to professionally led groups offering 

information and advice as this is the most preferred 

format. However, there is also a need for patient led 

groups providing emotional support, particularly 

among those experiencing worse problems from their 

cancer 

Funder: Dimbleby Cancer Care 



Development and Pilot Testing of the 

“Question Prompt List (QPL)” Intervention to 

Meet Information Needs of Advanced Cancer 

Patients in the UK 

Jones H.M. 1 , Harding R. 1 

1 King’s College London, Department of Palliative 

Care, Policy & Rehabilitation, London, United 


Background: The Question Prompt List (QPL) is an 

intervention designed to address unmet needs among 

patients and carers. It provides a list of topics and 

questions that they may wish to raise and offers both 

wording and topics to facilitate their ability to pose 

questions. A Palliative Care (PC) QPL designed in 

Australia has been shown to be an inexpensive and 

effective communication tool for cancer patients in 

PC consultations. 

Aim: To identify the information needs of UK 

patients and carers and then adapt the Australian QPL 

for UK PC patients and carers. 

Method: We conducted qualitative interviews with 

15 patients and 15 carers to assess information needs 

and views of the Australian QPL. Health professionals 

also reviewed the draft document. 

Results: 15/30 of participants wished to be fully 

informed about their illness, with 6/15 of patients 

stating they had problems formulating questions. 

Concerns included: concerns about disease and 

treatment (e.g. prognosis), practical concerns (e.g. 

finances and caring) and emotional concerns (e.g. 

needing emotional support). 22/30 agreed that the 

QPL was helpful, with only 4/30 stating they would 

not use the booklet either due to preferring avoidance 

or prior knowledge of the topics included. No health 

professionals had objections to the intervention. The 

UK QPL remained similar to the Australian QPL. 

Issues raised by participants and additional of 

information on the PC team and external sources of 

support were added. Layout and country-specific 

49 

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questions changes were made. The reading grade was 

reduced from 8 to 6 to reflect the local population. 

Discussion: Participants had a range of concerns 

around disease and treatment, practicalities and 

emotion issues as well as a range of coping and 

communication preferences ranging from avoidance 

to full disclosure. This highlights a need for PC 

professionals to address communication preferences 

with individuals and to tailor discussions accordingly. 

Funded by Dimbleby Cancer Care. 



Sexuality and Intimacy from the Clients’ 

Perspective: How Are Health Care 

Professionals to Discuss the Impact of Cancer? 

de Vocht H.M. 1 , Notter J. 2 , van de Wiel H. 3 

1 Saxion University, Expertisecentre Health, Social 

Care & Technology, Deventer/Enschede, 

Netherlands, 2 Birmingham City University, 

Birmingham, United Kingdom, 3 University Medical 

Centre Groningen, Groningen, Netherlands 

The raising awareness among professionals regarding 

the impact of cancer and cancer treatment on 

sexuality is an important development. However, 

professionals are struggling addressing intimate 

topics. What is lacking is information based on 

clients’ perspectives and preferences. 

Aims: 

to explore clients’ perspectives on the impact of 

cancer on sexuality and intimacy 

to explore clients’ perspectives on discussing sexuality 

and intimacy with health care professionals 

to develop a patient driven communication model to 

discuss sexuality and intimacy in cancer and palliative 

care 

Methods: This study is based on a hermeneutic 

phenomenological approach. The study design draws 

together samples offering multiple perspectives on a 

shared experience. Data were collected through indepth 

interviews with 7 couples, 8 patients and 6 

partners confronted with cancer (N=28 clients in 

total). Health care professionals (N=20) working in 

cancer and palliative care were consulted as experts. 

Data analysis was enhanced by the use of ATLAS.ti 

and by peer debriefing. 

Results: Cancer diagnosis and treatment have a big 

impact on sexuality and intimacy, but the quality of 

the impact differs greatly from case to case. 

Many health care professionals in cancer and 

palliative care do not address sexuality and intimacy 

and if they do, this is often done in a way that does 

not match clients’ preferences. 

Most clients do (or would) value discussing their 

sexuality and intimacy with health care professionals, 

and they have very clear preferences regarding this 

communication. 

Conclusion: Professionals in cancer and palliative 

care tend to address sexuality and intimacy in a 

manner that is based on professional protocols and 

that does not reflect and cannot be tailored to the 

unique situation the client and partner are in. 

As practical outcomes of this study, the patient driven 

BLISSS communication model combined with the 

model for stepped skills provide clear signposts 

towards a way forward. 

Free Communication – 

End of Life Care II 



Voices from the Community: People’s 

Perspectives on Preferred Priorities for Care 

and Communication at the End of Life 

Fineberg I.C. 1 , Turner M. 1 , Wang X. 1 , Stengel K. 1 , Lynch 

T. 1 , Hoti V. 2 , Francis B. 2 


End of Life Care, School of Health and Medicine, 

Lancaster, United Kingdom, 2 Lancaster University, 

Lancaster, United Kingdom 

Research aims: The ‘Preferred Priorities for Care’ 

document (PPC; formerly named ‘Preferred Place of 

Care’) is a patient-held advance care planning tool 

that was introduced in England within the last 

decade. The aims of this study were to provide depth 

and breadth about people’s experience of the PPC and 

communication. Patients, family members and 

nursing staff in the community were invited to 

express their views about advantages and 

disadvantages to PPC, barriers to its use, and 

communication about end of life care in general. 

Design and methods: This mixed methods study 

included semi-structured interviews and written 

surveys. Patients, family members and communitybased 

nursing staff were approached for both phases 

of the study. Phase One interviews were recorded, 

transcribed and thematically analysed by a 

multidisciplinary team using Atlas.ti software. Phase 

Two surveys were developed based on Phase One 

data. The anonymous surveys were sent by post to 

randomly chosen adult patients in the community. 

Community-based nurses were invited via their 

nursing managers to complete the survey on-line or in 

hard-copy. SPSS software was used to conduct 

descriptive and explanatory statistics. 

Results: Study participants included people who had 

and had not used the PPC document. Results revealed 

people’s focus on how the document is used rather 

than how it itself is structured. Importantly, data 

illuminated perspectives on overall communication 

about end of life care. 

Conclusion: Patients, family members and nurses 

who have and have not used PPC were willing to 

discuss their views about the advance care planning 

tool. Essential information about how the tool is 

perceived and used serves as important feedback to 

the health care system. People’s perspectives on 

communication provide critical insight for those 

providing care at the end of life. Funding was 

provided by the NIHR Research for Patient Benefit 

programme. 



What’s Dignity Got to Do with it? The 

Development of a Complex Intervention: A 

Dignity Care Pathway (DCP) for Use by 

Community Nurses with People Receiving End 

of Life Care at Home 

Johnston B.M. 1 , Ostlund U. 2 , Brown H. 3 , Chochinov H. 4 

1 University of Dundee, School of Nursing and 

Midwifery, Dundee, United Kingdom, 2 Karolinska 

Institutet, Nursing, Stockholm, Sweden, 3 NHS 

Highland, Oban, United Kingdom, 4 University of 

Manitoba, CancerCare Manitoba, Winnipeg, MB, 

Canada 

Background: People experiencing end-of-life care 

fear loss of dignity and a central tenet of palliative care 

is to help people die with dignity. Palliative care 

should be based on holistic assessment with patient 

sand carers, of their physical, social, emotional, 

cultural, and spiritual care needs and comprise a 

broad range of care activities addressing distress that 

might influence their sense of dignity. This study has 

developed, implemented and tested an intervention, 

the Dignity Care Pathway (DCP), providing evidence 

to conserve the dignity of dying patients/ families 

receiving end-of-life care at home. 

Method: This 2 year intervention study is 

underpinned by the (MRC) complex intervention 

framework. The DCP is based on the theoretical 

model developed by Chochinov et al (2002). It has 4 

sections; a manual; Patient Dignity Inventory 

(Chochinov 2008); reflective questions and care 

actions. Reflective questions and care actions in the 

DCP were evidenced from a systematic literature 

review and focus group interviews with patients, 

carers, and HCPs. Use of the DCP was preceded by an 

education day. Feasibility and acceptability of the 

DCP was tested in a mixed method qualitative 

evaluation with a purposive sample of community 

nurses using diaries; longitudinal interviews and case 

studies. 

Results: The DCP is acceptable to community nurses, 

helps identify key concerns from the patients’ 

viewpoint and aids the nurse providing holistic end of 

life care. The tool requires the nurse to have excellent 

communication skills. Some nurses found it hard to 

initiate conversations on dignity and care. All nurses 

wish to continue to use the DCP and recommend it to 

others. 

Conclusion: Community nurses use of the DCP will 

help patients receive individualised care, which will 

directly relate to the issues they have identified as 

most distressing and/or important and their preferred 

measures to address these issues. 



Introduction of the Liverpool Care Pathway 

for the Dying Patient in a General Hospital 

Geijteman E.C.T. 1 , Smorenburg C.H. 1 , Jong M.A.C. 1 , Van 

der Heide A. 2 , Van Zuylen L. 3 

1 Medical Center Alkmaar, Department of Internal 

Medicine, Alkmaar, Netherlands, 2 Erasmus Medical 

Centre, Department of Public Health, Rotterdam, 

Netherlands, 3 Erasmus Medical Centre, Department 

of Medical Oncology, Rotterdam, Netherlands 

Research aims: It has been shown that the use of 

the Liverpool Care Pathway for the Dying Patient 

(LCP) contributes to quality of care for the dying 

person. In this study we examined the short- and 

longer-term effects of introduction of the LCP in a 

general hospital at the department of oncology and 

haematology. 

Study design and methods: The LCP was 

implemented during six months. By means of a 

checklist we studied 60 patient files: 20 randomly 

chosen files of patients who died before introduction 

of the LCP (measurement 0 (M0)), 20 randomly 

chosen files of patients who died within three months 

after introduction of the LCP (M1), and 20 randomly 

chosen files of patients who died between three and 

six months after the introduction (M2). The checklist 

contained different propositions reflecting good care 

in the dying phase. 

Results: The mean time between the start of the LCP 

and the patient’s death was 14.7 hours (M1) and 46.9 

hours (M2), respectively. 

The documentation of illness perception of both the 

patient and his/her relatives increased after the 

introduction of the LCP (M0 25 %, M1 90% and M2 

90%). The spiritual support to patients and their 

relatives improved (M0= 42.5%; M1= 72.5%; M2= 

90%). Furthermore, other caregivers (especially GPs) 

were better informed about the patient’s condition 

after introduction of the LCP (M0= 2.5%; M1= 60%; 

M2= 62.5%). In addition, major symptoms, such as 

pain and restlessness, were better documented after 

the introduction (M0= 50%; M1= 95%; M2= 95%). 

Conclusion: The introduction of the LCP in a 

general hospital improves the quality of care for the 

dying patient. This improvement persists and even 

became stronger in the longer-term. 

Source of funding: None 



Prevalence of Perceptions of Inappropriate 

Care among Intensive Care Unit Healthcare 

Providers and Reasons why Disproportional 

Care Is Continued: The APPROPRICUS Study 

Piers R. 1 , Azoulay E. 2 , Benoit D. 1 , Ricou B. 3 , DeKeyser F. 4 , 

Decruyenaere J. 1 , Max A. 2 , Michalsen A. 5 , Depuydt P. 1 , 

Owczuk R. 6 , Maia P.A. 7 , Rubulotta F. 8 , Reyners A. 9 , Meert 

A.-P. 10 , Aquilina A. 11 , Schrauwen W. 1 , Van Den Noortgate 

N. 1 

1 Ghent University Hospital, Gent, Belgium, 2 Hôpital 

Saint-Louis, Paris, France, 3 University Hospital of 

Geneva, Geneva, Switzerland, 4 Hadassah-Hebrew 

University, Jerusalem, Israel, 5 Medical Park Loipl, 

Bischofswiesen/Loipl, Germany, 6 Medical University 

of Gdansk, Gdansk, Poland, 7 Centro Hospitalar do 

Porto, Porto, Portugal, 8 Policlinico University 

Hospital, Catania, Italy, 9 Universitair Medisch 

Centrum, Groningen, Netherlands, 10 Institut Jules 

Bordet, Brussel, Belgium, 11 Mater Dei Hospital, Msida, 

Malta 

Introduction: Advances in medical technology 

enable more lives to be saved but sometimes may 

prolong the dying process and suffering of patients 

and families at the end of life. 

Objectives: To determine the prevalence of 

inappropriate or non-beneficial care in Intensive Care 

Unit (ICU) patients as perceived by ICU healthcare 

providers (HCP), as well as the reasons for this 

perception. Second, to explore why disproportional 

care is continued. 

Methods: A single-day cross-sectional survey among 

1691 ICU HCP in 82 (adult patient) ICUs in 10 

European countries. 

Results: 27% (439/1651) of HCP found that care was 

inappropriate for at least one of their patients. 

‘Providing too much care (disproportional care)’ 

(58%), ‘other patients would benefit more from ICU 

care’ (38%) and ‘lack of participation by one of the 

parties involved in decision-making’ (26%) were most 

frequently evoking this perception of inappropriate 

care. ‘Providing too little care’ was reported in only 


7% of the cases.The main identified ICU relatedfactors 

perpetuating disproportional care were: 

prognostic uncertainty (57%) or lack of consensus 

concerning the prognosis (39%), no one in the ICU 

team taking initiative to challenge the 

appropriateness of care (37%) or no one taking action 

to limit therapy despite consensus (37%). 

Patient/Family-related factors that cause the 

continuation of disproportional care were: patient 

and/or family not ready to withdraw therapy (44%) 

and asking to continue care (39%). Request from the 

referring physician to continu disproportional care 

was identified in 35% of cases. 

Conclusion: 1 in 4 ICU HCP perceived that at least 

one of their patients was getting inappropriate care. 

Providing ‘too much care’ is the most frequent 

situation evoking this perception. Mechanisms both 

inside and outside the ICU lead healthcare providers 

to continue patient care that is perceived as 

disproportional. 

Grant acknowledgement: ESICM / ECCRN award 

(Vienna 2009). 



Quality Indicators for Care in the Dying Phase 

- How Well Can They Capture Good Care and 

how Applicable Are They? 

Galushko M. 1 , Raijmakers N. 2,3 , Domeisen F. 4 , Lundh 

Hagelin C. 5,6 , Lindquist O. 5,6 , Popa Velea O. 1 , Romotzky 

V. 1 , Ellershaw J. 7 , Ostgathe C. 8 , on behalf of OPCARE9 

1 University Hospital Cologne, Department of 

Palliative Medicine, Köln, Germany, 2 Department of 

Public Health, Erasmus MC Rotterdam, Rotterdam, 

Netherlands, 3 Department of Medical Oncology, 

Erasmus MC Rotterdam, Rotterdam, Netherlands, 

4 Centre of Palliative Care, Cantonal Hospital of 

St.Gallen, St. Gallen, Switzerland, 5 Sophiahemmet, 

University College Stockholm, Stockholm, Sweden, 

6 Department of Oncology-Pathology, Karolinska 

Institutet, Stockholm, Sweden, 7 University of 

Liverpool, Marie Curie Palliative Care Institute, 

Liverpool, United Kingdom, 8 University Hospital 

Erlangen, Division of Palliative Medicine, Erlangen, 

Germany 

Background: OPCARE9 is a 3 year EU 7 th framework 

project that was launched in March 2008. The aim for 

the 9 participating countries is to optimise research 

and clinical care for cancer patients in the last days of 

life. Within this project, one of the objectives was to 

identify and evaluate quality indicators (QI) against 

which to measure future care in the last days of life. 

Method: A literature search was performed to 

identify QI with a numerator, a denominator and a 

performance standard that focus specifically on the 

last days of life. For an online survey among 64 

European and 7 non-European experts in palliative 

care and/or QI development a questionnaire was 

developed, piloted and refined. All selected QI had to 

be rated on a 4-point Likert scale for being a good 

descriptor and being applicable in the last days of life. 

Comments and further QI could be added by the 

respondents. 

Results: In total, 42 out of 71 experts (59 %) with 

different professional background responded, 69% 

directly involved in patient care and 33% in QI 

development. “Presence of dedicated room space for 

meetings on the ICU between clinicians and families” 

reached the highest agreement for good description 

and applicability, with 62% respectively 64%. Lowest 

agreement for both dimensions was reached by the 

items of the Therapy Impact Questionnaire (TIQ). 

Additionally, 45 QI were mentioned by the experts to 

be good descriptors and 17 to be applicable. 

Nevertheless, the quality of these differed 

considerably. 

Conclusion: QI are necessary to optimize patient 

care and guarantee a standard of high quality care. 

However, the results of our study show that beside 

single items that reached high consensus, 

identification of a comprehensive set of useful and 

applicable QI for the dying phase is difficult. 

Therefore, existing QI have to be revised and new QI 

to be developed. The aim should be to have a set of 

indicators representing both good care and 

applicability in the last days of life. 



The Impact of Dementia on the Cause and 

Place of Death 

Sampson E.L. 1 , Jones L. 1 

1 University College Medical School, Marie Curie 

Palliative Care Research Unit, London, United 


Aims: One third of those over 60 years will die with 

dementia. Our aims were to examine the effect of 

dementia on the primary cause and original 

underlying cause of death, the association of 

dementia with the place of death and the frequency of 

reporting of dementia on death certificates. 

Methods: Longitudinal cohort study (617 people, 

aged over 70), with emergency medical admission to 

general hospital (June-December 2006). Principle 

exposure was DSM-IV dementia. The main outcome 

was mortality; information on date, place and cause 

of death (“primary” and “original underlying” cause) 

was obtained from death certificates. 

Results: 297 patients (48%) were deceased by June 

30 th 2008, 51% of these had dementia. Dementia was 

significantly associated with a primary cause of death 

of pneumonia (OR 5.95, 95% CI 1.44-4.58) but not 

with primary cause of death from cancer (OR 0.32, 

95%CI 0.15-0.66). In dementia, odds of original 

underlying cause of death from cancer were reduced 

(OR 0.41, 95% CI 0.21-0.76) but significantly 

increased for septicaemia (OR 2.83, 95% CI 1.13-7.04) 

and cerebrovascular disease (OR 2.61, 95% CI 1.22- 

5.58). 3.3% of those with dementia died in a hospice 

compared to 16.7% of those without. 8.5% of those 

with dementia died at home (compared to 13.9% of 

those without). Only those with primary cause of 

death of cancer or cardiac failure died in hospices. 

Only 1/3 rd of those with dementia had this mentioned 

on death certificates (more likely in women, less 

educated and deaths in care homes). 

Discussion: Patients with dementia were more likely 

to die from pneumonia and less likely to have an 

original underlying cause of death of cancer; cohort 

studies with subsequent autopsy have also confirmed 

this association. People with dementia were less likely 

to die in a hospice. Under representation of dementia 

on death certificates is of concern as its impact may be 

underestimated in economic costs, health planning 

and funding priorities for research. 

Free Communication – Ethics II 



Efficacy of a Prognostic Test in Non Cancer 

Patients - A Longitudinal Observational 

Prospective Study 

Sánchez Isac M. 1 , Recio Gállego M. 1 , Cantero Sánchez N. 1 , 

Núñez Olarte J.M. 1 , Guevara Méndez S. 1 , Pérez Aznar C. 1 , 

Solano Garzón M. 1 , Conti Jiménez M. 1 

1 Hospital General Universitario Gregorio Marañón, 

Unidad de Cuidados Paliativos, Madrid, Spain 

Background: Determining prognosis is more 

complicated in life threatening non-malignant illness 

than in cancer.Objective: To test the efficacy of a 

prognostic test proposed for terminal non-malignant 

disease (survival ≤ 1 year). It includes diagnosis criteria 

[National Hospice and Palliative Care Organization 

criteria and specific criteria for some chronic 

progresive diseases - Acquired Immune 

Deficiency Syndrome (AIDS), Amyotrophic Lateral 

Sclerosis (ALS), Parkinson] and prognostic criteria 

(funcionality acording to Palliative Performance Scale 

≤ 50). The test is positive if the patient meets both 

criteria. 

Methods: The test was calculated in all patients 

consecutively referred to a palliative care support 

team with a non cancer diagnosis, the data was 

analysed by SPSS program. 

Results: 94 patients were enrolled in the study. 

59.6% were women. The median age was 80,7 years. 

The following diseases were assesed: Congestive Heart 

Failure, Dementia, Chronic Obstructive Pulmonary 

Disease, ALS, End Stage Liver Disease, End Stage Renal 

failure, AIDS and Parkinson. The average value for the 

PPS was 37.02. Every patient with a PPS > 50 lived for 

more than a year ( p< 0.001). The test was positive for 

58 patients (65%). The one year mortality was higher 

in that group (95% versus 80%, p= 0.04).The 

sensibility was 65.5%, the specifity was 70%, the 

positive predictive value was 95% and the negative 



predictive value was 19%. 

Conclusion: The proposed test of terminality has a 

high PPV in our population and predicts the 

probability of surviving less than a year in the nonmalignant 

proposed diseases. It could be a useful tool 

that used in conjunction with physician judgement 

and an individual evaluation of each patient would 

help to establish patient´s elegibility for care 

programs. 



Autonomy in End-of-Life Decision Making 

and the Impact of Socio-economic and 

Cultural Factors 

Deschepper R. 1 , Bilsen J. 2 , Sterckx S. 2 , Deliens L. 2,3 , End-of- 

Life Care Research Group Ghent University & Vrije 

Universiteit Brussel 

1 Vrije Universiteit Brussel, Medical Sociology, 

Brussels, Belgium, 2 Vrije Universiteit Brussel, Brussels, 

Belgium, 3 EMGO Institute for Health and Care 

Research VU University Medical Center, Amsterdam, 

Netherlands 

Introduction: Personal autonomy is usually 

understood as self-directing freedom, implying the 

right to make one’s own decisions as a competent 

individual. Autonomy is especially important but also 

highly complex in end-of-life decision making 

(ELDM) when the focus tends to shift from ‘objective’ 

evidence based options for cure to more subjective 

preferences about how to die. Although ELDM always 

takes place within a certain socio-economic and 

cultural context, little is known about the possible 

influence of this context on ELDM. 

Aim: To explore the possible impact of the socioeconomic 

and cultural factors on the role of 

autonomy in ELDM. 

Method: Exploration of socio-medical and 

anthropological literature in relation to autonomy in 

ELDM. 

Results: Notwithstanding the fact that in 

contemporary, industrialized societies personal 

autonomy is given high priority, several socioeconomic 

and cultural factors were identified that 

may have an impact on the personal autonomy in 

end-of-life decision making, e.g. the perceived burden 

for the family, financial burden, the (un)availability of 

care, ‘gerontophobia’, perceptions of dignity, strict 

adherence to the ‘sanctity of life’ doctrine and 

unrealistic belief in the medico-technological 

enterprise. There are indications that these factors 

may interact with patients’ conceptions of autonomy. 

Conclusion: The identified factors challenge the 

concept of autonomy as a purely individual matter. 

Autonomy is to some extent a cultural construct and 

hence, societies may have different views on it. 

Furthermore, real autonomy is only possible if certain 

minimal socio-economical and cultural conditions 

are met. Vigilance is necessary to avoid undesirable 

pressure on the personal preferences of the patient. 

Taking into account the socio-economical and 

cultural context is necessary for a better and in-depth 

understanding of the various factors influencing the 

nature and operation of autonomy in end-of-life 

decision making. 

Funded by FWO Flanders (AL336) 



Culture, Country and End-of-Life Care. 

Similarities and Differences between Italy, 

Spain and Portugal 

Meñaca A. 1 , Evans N. 1 , Andrew E.V.W. 1 , Toscani F. 2 , 

Higginson I.J. 3 , Harding R. 3 , Pool R. 1 , Gysels M. 1 , on behalf 

of Project PRISMA. PRISMA Is Funded by the European 

Commission’s Seventh Framework Programme (Contract 

Number: Health-F2-2008-201655) 


(CRESIB), Barcelona, Spain, 2 Fondazione Lino 

Maestroni -ONLUS, Cremona, Italy, 3 King’s College 

London, Department of Palliative Care, Policy & 

Rehabilitation, London, United Kingdom 

Background: Evidence from a range of sources 

demonstrates that end-of-life (EoL) care practices and 

preferences vary depending on country and culture is 

consistently one of the main explanations given for 

this variability. 

Aim: To explore how culture is used in the literature 

to explain similarities and differences in EoL care 

practices and preferences between Spain, Italy and 

Portugal. 

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Methods: Country-specific database searches and 

hand searches were performed to find articles that 

focused on ‘culture’ operationalised as the 

perceptions, opinions, understandings, knowledge, 

preferences, attitudes, practices and behaviours of the 

different actors involved in EoL care. 

Results: Four reviews, 191 original studies, and 34 

overviews or opinion pieces were analyzed. 

Qualitative methods were utilized in less than one 

fifth of the included original studies. Differences and 

similarities between the three countries related to 

setting of care and death, disclosure, advance 

directives, medical EoL decisions, attitudes towards 

care and death, and informal caregivers. In all the 

themes, especially in disclosure and advance 

directives, a gap between preferences and practices 

was found. The role of religion and the importance of 

family ties were the two main cultural factors used to 

explain the similarities. Important differences were 

also found, but they were not so clearly interpreted. 

Conclusion: To avoid stereotypes, understand the 

differences between EoL care preferences and 

practices in Italy, Spain and Portugal, and address the 

gap between norms and practices, in-depth cultural 

analysis is needed. 



Physician Assisted Suicide, Euthanasia and 

Palliative Sedation: Attitudes and Incidence 

in Germany 

Evans N. 1 , Andrew E.V.W. 1 , Meñaca A. 1 , Bausewein C. 2 , 

Higginson I. 2 , Harding R. 2 , Pool R. 1 , Gysels M. 1 , on behalf 




1 Centre de Recerca en Salut Internacional de 

Barcelona (CRESIB), Barcelona, Spain, 2 King’s College 

London, Department of Palliative Care, Policy and 

Rehabilitation, School of Medicine at Guy’s King’s 

and St. Thomas Hospitals, Cicely Saunders Institute, 


Background: The legality of physician assisted 

suicide (PAS), euthanasia and palliative sedation 

varies across Europe. Attitudes to, and incidence of, 

these practices are less well known. 

Aim: To review evidence on attitudes to, and 

incidence of, PAS, euthanasia and palliative sedation 

from Germany. 

Methods: Critical review. Studies on PAS, euthanasia 

and palliative sedation, identified from a systematic 

review of culture and end-of-life care in Germany (in 6 

electronic databases, 3 journals, reference lists, and 

grey literature) were included. A qualitative metasynthesis 

identified cross-cutting themes. 

Results: Twenty-five studies (1990-2008) were 

identified (80% quantitative). Key themes were: 

confusion, acceptance, attitude determinants, and 

incidence. The literature demonstrates healthcare 

professionals’ (HCPs) confusion of the legality of PAS 

and the difference between active and passive 

euthanasia. Conflicting results were found regarding 

public and HCP acceptance of euthanasia and PAS. 

Palliative sedation was widely accepted. Experience of 

palliative care was linked to low public and HCP 

acceptance of euthanasia and PAS. Students’ PAS 

acceptance was related to individualist attitudes. In 

cross-country comparison Germans showed relatively 

low acceptance of euthanasia for a secular society. 

Only a minority of patients considered PAS and a 

small minority of physicians had carried out 

euthanasia, whereas requests for, and use of, palliative 

sedation were increasing. 

Conclusion: Germany has low incidence of 

euthanasia and PAS. Palliative sedation, in contrast, is 

widely accepted and used. Confusion over practices’ 

legality and definition and conflicting findings for 

acceptance were identified. No social consensus 

regarding euthanasia and PAS was identified, though 

acceptance of both was linked to experience of 

palliative care and psycho-social factors. 



‘How Much Longer Will it Take?’ The Role of 

the Family in the Palliative Sedation 

Trajectory 

van Tol D.G. 1 , van der Vegt B.J. 1 , Vezzoni C. 1,2 , Weyers 

H. 1,3 

1 University Medical Centre Groningen, University of 

Groningen, Health Sciences, Metamedica, 

Groningen, Netherlands, 2 University of Trento, 

Department of Sociology and Social Research, Trento, 

Italy, 3 University of Groningen, Department of Legal 

Theory, Groningen, Netherlands 

Aim: In 2005 a Dutch guideline for palliative 

sedation (PS) was adopted. PS is considered to be part 

of palliative care. The WHO describes palliative care as 

an approach aimed at patients and their families. This 

paper presents qualitative data about the role of the 

family in PS in the experience of Dutch doctors. 

Methods: We did a qualitative interview study 

among 47 doctors. Respondents were selected from 

participants in an earlier quantitative survey (n=793). 

Selection was based on survey-results and aimed to 

include doctors varying in experience and attitude 

considering end of life treatments. Interviews (semistructured, 

ca. 60 minutes) were transcribed and 

analysed with qualitative data analysis software 

(Atlas/ti). 

Results: Doctors spontaneously mention the family 

as an important party to be involved in the decision to 

start PS. If a patient suffers from refractory symptoms, 

doctors report the patient and the family mostly 

embrace the suggested possibility of PS. Considering 

the period during which the patient is sedated until 

the end, varying from hours to almost two weeks in 

the doctors stories, the interviews contain recurring 

elements about the families role. Doctors sometimes 

experience difficulties to convince family members 

that the patient is not suffering anymore. Also doctors 

report about family members becoming impatient or 

even considering it unacceptable or undignified for 

the dying process to take so long. Sometimes this 

leads to pressure on the doctor to end a situation that 

the doctor himself considers a normal dying process. 

Conclusion: In the decision to start PS doctors find it 

important to involve the family of the patient. 

Misunderstandings may rise between the doctor and 

family members if the patient is not dying shortly 

after sedation started. This emphasizes the 

importance of careful communication between 

doctor and family during the whole PS trajectory. 



Cultural Context of End-of-Life Care: A 

Scoping Exercise of the Belgian Literature 

Andrew E.V.W. 1 , Evans N. 1 , Meñaca A. 1 , Cohen J. 2 , 






(CRESIB), Barcelona, Spain, 2 End-of-Life Care 

Research Group, Vrije Universiteit Brussel, Brussels, 

Belgium, 3 King’s College London, Department of 

Palliative Care, Policy & Rehabilitation, Cicely 

Saunders Institute, London, United Kingdom 

Background: As end-of-life (EoL) care is expanding 

across Europe and the rest of the world, service 

developments are increasingly mapped and studied. 

The cultural context in which such developments 

take place, however, is often neglected in research. We 

explored the cultural context of EoL care in Belgium 

as represented in the research literature, one portal for 

such an analysis. 

Methods: A scoping of the literature following a 

systematic search procedure and a qualitative metasynthesis 

of literature findings concerning EoL care in 

Belgium. Searches were carried out in eight electronic 

databases, five journals, reference lists, and grey 

literature. 

Results: Eighty-nine original studies (60% 

quantitative, 36% qualitative, 4% mixed methods) 

met inclusion criteria. The majority (90%) of articles 

were published between 2000 and 2010. Five major 

themes were identified: Setting; Caregivers; 

Communication; Medical EoL Decisions (MELDs); 

and Minority Ethnic Groups. Medical EoL Decisions 

(MELDs) was the most frequent theme, with much of 

the literature addressing how different decisions were 

made and the euthanasia law implemented, clarifying 

definitions of specific MELDs, and calculating 

incidences. Gaps in research included: research 

situated in non-Catholic healthcare institutions and 

Wallonia; the role and experiences of informal 

caregivers; experiences of minority ethnic groups; 

issues of access to palliative care, current incidences of 

MELD other than euthanasia. Furthermore there was 

a general paucity of in-depth qualitative studies 

concerning all themes. 

Conclusion: Though palliative care in Belgium is 

highly developed, the legalization of euthanasia in 

2002 has greatly influenced research as practitioners 

and researchers have monitored the law’s effects. 

Attention to how culture shapes notions of what is 

appropriate care at the EoL is needed to better inform 

decision-making and situate country-specific 

practices in an international context. 


Research Methodology 



The Mixed Methods Approach to Develop and 

Assess Palliative Care in Neurodegenerative 

Conditions 

Veronese S. 1,2 , Oliver D.J. 2 

1 Fondazione F.A.R.O. Onlus, Palliative Care, Torino, 

Italy, 2 University of Kent, Centre for Professional 

Practice, Chatham, United Kingdom 

Palliative care has been proposed for people affected 

by neurological conditions. The design and 

assessment of new services has been advocated 

because little evidence exists about the impact of a 

Specialist Palliative Care Service (SPCS) in this field. 

Following the MRC framework a mixed methods 

approachwas used to: 

assess the unmet palliative care needs of people 

severely affected by Motor Neurone Disease 

(ALS/MND), Multiple Sclerosis (MS), Parkinson´s 

Disease and related atypical syndromes (PDs) with a 

qualitative approach and identify individual Palliative 

Care Outcomes (PCO) to be measured. 

evaluate the impact of a newly designed SPCS on 

these PCO using quantitative methods 

For the needs assessment 22 patients and their lay 

carers were investigated with in depth interviews and 

the views of 11 professional carers were explored in 3 

focus groups. The content analysis of these events 

showed a high prevalence of physical uncontrolled 

symptoms, psychosocial and spiritual unmet needs 

and poor satisfaction with existing services. 

The quantitative phase was an explorative RCT using 

the waiting list methodology. 50 patients severely 

affected by ALS/MND, MS and PDs and their lay carers 

were randomized in two equal groups. The Fast Track 

group (FT) received the SPCS at once and the control 

group (ST) waited for 16 weeks. After the wait both 

could receive the SPCS. Comparing the differences in 

the PCO between the 2 groups after 16 weeks the 

following results (all favourable to the FT) were 

obtained: 

A statistical (p< 0.007) and clinical relevant 

improvement in the individual QoL and in symptom 

control (Pain, dyspnoea, quality of sleep & bowel 

symptoms) and in the social isolation of the patient 

A clinical moderate improvement in urinary and oral 

symptoms, other social and spiritual items 

no significant differences in other PCO 

This study has shown that SPCS can improve the 

quality of life and symptoms of patients with 

progressive neurological disease. 



Learning from Experience - Enabling 

Palliative Care Phase III Studies the Palliative 

Care Clinical Studies Collaborative (PaCCSC) 

Hardy J. 1 , Shelby-James T. 2 , Agar M. 3 , Currow D.C. 2 

1 Mater Health Services, Palliative Care, South 

Brisbane, Australia, 2 Flinders University, Department 

of Palliative and Supportive Services, Daw Park, 

Australia, 3 Braeside Hospital, Palliative Care, 

Prairiewood, Australia 

Background: Research in palliative care is 

challenging. Trial participants are likely to have 

deteriorating performance status, multiple comorbidities 

and co-medications, and progressive 

disease. Attrition unrelated to the study intervention 

is high. PaCCSC was formed specifically to undertake 

clinical research in this patient group and is now 

supporting six randomised controlled trials across 

Australia. PaCCSC holds an annual research forum to 

explore improved trial design. 

Methods: In 2010, 14 studies were presented, and 

solutions to improve rigorous trial design. Each 

presenter addressed 3 questions: 

1) What has worked well; 

2) What has worked less well; and 

3) What would they have done differently. 

Results: 

· Trials are more successful if inclusion criteria are 


wide. Trials of short duration are more likely to be 

completed. Patient assessments must be brief to 

ensure compliance. 

· Collaboration is important. Sites have developed 

recruitment networks with other departments and 

other medical disciplines in their 

institution/networking. 

· The development of Standard Operating Procedures 

for trials in palliative care has aided consistency across 

sites. 

· Proxy consent has been supported by guardianship 

tribunals and ethics committees. 

· Gate-keeping is common, especially if the control or 

interventions vary from locally established practice. 

· It is easier to recruit to studies if the investigator has 

primary care of potential participants. 

· In planning studies, attrition rates of up to 40% 

should be anticipated independent of the 

intervention. 

Conclusion: The presentations demonstrated that it 

is possible to undertake high quality RCTs in patients 

with life limiting disease. The findings will assist to 

develop guidelines and standards for palliative care 

research. 



A Systematic Review of the Evidence on Views 

and Experiences of Participating in Research 

at the End of Life 

Gysels M.H. 1,2 , Evans C. 1 , Higginson I.J. 1 

1 King’s College London, London, United Kingdom, 

2 University of Barcelona, Barcelona, Spain 

Aim: The evidence-base informing end of life (EoL) 

care is weak but development is hampered by the 

assumption that patients at the EoL are too vulnerable 

to participate in research. We aim to systematically 

review the evidence regarding patient, caregiver and 

other stakeholders’ views on involvement in EoL care 

research, and identify best practice to achieve this. 

Methods: We searched seven electronic databases, 

and hand searched three journals and the 

bibliographies of relevant papers. Inclusion criteria 

were: systematic reviews and original research papers 

with standard study designs on involvement in EoL 

care research or its impact on participants. The 

findings were synthesised drawing on the principles 

of narrative synthesis. 

Results: 23 studies were identified, from: USA (11), 

UK (9) and Australia (3). The majority of studies 

focused on patients with cancer (14) and were mostly 

conducted in hospices (9) and hospitals (9). Studies 

enquired about issues related to EoL care research in 

general (5), research using social science methods 

(13), and trial research (5). The studies evaluating 

willingness to participate in EoL care research showed 

positive outcomes across the different parties. Factors 

influencing willingness were mainly physical and 

cognitive impairment. Participating in research was a 

positive experience for the majority of patients and 

carers, but a minority experienced distress. This was 

related to: characteristics of the participants; the type 

of research; or the way it was conducted. Examples of 

successful studies informed the conditions conducive 

to undertaking valid and sensitive research. Gaps in 

the evidence were identified. 

Conclusion: The evidence shows that the ethical 

concerns regarding patient participation in EoL care 

research are often not justified. But research studies 

require increased sensitivity to enable those at the EoL 

to participate. We present a conceptual model on 

research participation for vulnerable people. 

NIHR 



Providing Infrastructure to Conduct Multisite 

Research within Palliative Care - 

Learnings from the Palliative Care Clinical 

Studies Collaborative (PaCCSC) 

Shelby-James T.M. 1 , Fazekas B. 2 , Hardy J. 3 , Abernethy A. 4 , 

Currow D. 1 

1 Flinders University, Department of Palliative and 

Supportive Services, Daw Park, Australia, 

2 Repatriation General Hospital, Palliative Care, Daw 

Park, Australia, 3 Mater Health Services, Palliative Care, 

South Brisbane, Australia, 4 Duke University Medical 

Center, Durham, NC, United States 

PaCCSC is undertaking studies across 14 clinical 

services in Australia which vary in research capacity. 

To ensure consistent high quality research output 

from all sites irrespective of previous research 

exposure comprehensive infrastructure is needed. 

Methods: 

A number of process have been implemented, these 

include: 

• Governance system incorporating a Trials 

Management Committee to oversee conduct of 

studies and Scientific Committee to provide internal 

peer review process. 

• Independent Data Safety Monitoring Committee. 

• Standard Operating Procedures (SOPs) to ensure 

consistency across sites 

• Development of KPIs to ensure timely identification 

of potential problems 

• Funding for dedicated PaCCSC staff at each site to 

coordinate PaCCSC activities in addition to study 

specific funding for each study undertaken. 

• Work instructions to provide additional guidance to 

staff 

• Training on clinical trial methodology and 

legislation 

• Mentoring system for less experienced research 

sites/individuals 

• Development of a support network between sites to 

share knowledge and experience 

• Real time data entry and checking for data accuracy 

and consistency 

• Internal monitoring process to ensure study sites 

comply with Good Clinical Practice Guidelines, 

study protocols and SOPs 

Results: To date, more than 400 participants have 

been randomised in phase III studies, and data on 

more than 300 patients collected in Phase IV studies 

A sense of team across all sites has been developed 

with less experienced sites being supported by sites 

with more research knowledge. Monitoring of data 

and site performance demonstrates the increasing 

research capacity. PaCCSC provides the ideal 

mechanism for future multi-site research within 


Conclusions: Building research capacity within 

Palliative Care is a key aim of PaCCSC. The systems 

described above have ensured that all PaCCSC sites 

are producing high quality research that will inform 

clinical practice within palliative care in Australia. 



Title: End of Life for Cancer Patients in 

Albania 

Rama R. 1 , Boçe E. 1 , Prifti F. 1 , Shulla M. 1 

1 Ryder Albania Associaltion, Tirana, Albania 

In Albania, recently, cancer is ranked as second cause 

of death, after cardio-vascular diseases. In a year, 

about 70% of new cases with cancer diagnoses 

became part of palliative care (PC) treatment. As a 

new discipline PC is facing several challenges not only 

being part of health care system but even in social 

aspects of the end of life. Some of the common 

challenges are, approaches how the patients and their 

relatives are experiencing end of life, patients and 

relatives refuse to discuss about the death and do not 

accept it, high percentage of the patients doesn’t 

know the cancer diagnose etc. The aim of study is to 

explor the attitudes and perceptions of cancer 

patients, health professionals and relatives, regarding 

end of life. One of the main objectives is to find out 

and analyse the variables of patients, relatives and 

health professionals’ attitudes and perceptions.The 

authors have used the qualitative methods as suitable 

approach to reach the goal of study. There were 

developed 16 focus groups discussions in 7 main cities 

of the country (8 with health professionals, 8 with 

patients relatives) each focus group had 10 

participants) and 40 semi structural deep individual 

interviews (10 with stakeholders and 30 with cancer 

patients). Main findings of the study are: Albanian Society 

is not prepared for the end of life. Albanians behaviour is 

denial of death. The fact that there is nothing beyond 

death is the main reason for fear. This fact distinguishes 

the belivers from nonbelivers and atheists. Albanians 

in general repress the thought of death. Albanians fear not 

only death, but pain as well. Cancer diagnosis is not 

communicated by the doctor, believing that the 

mentality of our society can not manage it. Albanian 

health proffesionals are not prepared to communicate the 

terminal diagnosis. Doctors themselves are part of the 

mentality they consider “unprepared”. 

1 This study was financially supported by Czech 

Development Agency and Irish Development Aid 





Clinical Trial Methodology for Cancer 

Cachexia Patients: Phase I/II and Proof-of- 

Concept Trials Applying the New Cancer 

Cachexia Classification and Tailored 

Endpoints 

Strasser F. 1 , Blum D. 1 , de Wolf-Linder S. 1 , Oberholzer R. 1 , 

Omlin A. 2 

1 Cantonal Hospital St.Gallen, Oncological Palliative 

Medicine, St.Gallen, Switzerland, 2 Cantonal Hospital 

St.Gallen, Oncology, St.Gallen, Switzerland 

Aim: Effective interventions for advanced cancer 

patients (pts) suffering from cancer cachexia (CC) are 

needed. However, clinical trials (CT) provide often 

negative results, and early development studies are 

scarce. To develop CT methodology. 

Methods: Application of the new CC classification 

(Fearon & Strasser, Lancet Oncology) and assessment 

for CT design. 

Results: The clinical study “Effect of lenalidomide 

(Revlimid®) in solid tumour patients with inflammatory 

cancer cachexia syndrome on lean body mass and muscle 

strength: A multicenter, proof-of-concept study of fixed 

dose or CRP-response-guided dose of lenalidomide in 

relation to new standard basic cachexia management 

(receiving placebo)” limits patient eligibility to cachexia 

(excluding refractory cachexia), inflammatory 

cachexia (CRP >30g/dl), and diagnosis and treatment 

of secondary nutrition-impact symptoms. Systemic 

anticancer treatment is allowed, if stable (>1 mts). 

Basic palliative care and cachexia management 

(“evidence-based supportive care”) is defined (e.g., 

nutritional counselling, physical activity, 

psychosocial support). Primary endpoint: # 

responders (muscle mass [CT-L3 or DEXA] and hand 

grip strenght). Secondary endpoints: safety, 

nutritional intake, physical functioning (get-up-andgo, 

10 stair climb; activPal), CRP, eating-related 

symptoms (FAACT+), and tumour dynamics. 

“ A phase I/II study of individually dose-optimized (dose 

escalation) bi-daily sc natural ghrelin on safety, toxicity 

and tolerability, and nutritional intake, physical function, 

muscle mass, gastrointestinal motility, eating-related 

symptoms and inflammation.” In the titration phase, 

minimal dose for maximal nutritional intake is 

investigated, based on kcal / proteins from 2 day 

diaries, in addition improvement of cachexia-related 

symptoms and patient / family narratives are 

required. Maintenance phase explores also 

responders. 

Conclusion: Novel clinical trial design for CC may 

hold promise for new interventions. 

Free Communication – Pain 



Cancer Pain Classification: A Confirmative 

Study on Domains Associated with Pain 

Intensity and Treatment Response 

Brunelli C. 1 , Knudsen A.K. 2 , Klepstad P. 2 , Caraceni A. 1 , 

Pigni A. 1 , Apolone G. 3 , Corli O. 3 , Kaasa S. 2 , European 

Palliative Care Research Collaborative (EPCRC) 


INT, Milano, Italy, 2 Faculty of Medicine, NTNU, 

Trondheim, Norway, 3 Istituto di Ricerche 

Farmacologiche Mario Negri, Milano, Italy 

Aim: Cancer pain classification is important to 

improve research and pain management but 

knowledge about relevant domains to include in it, is 

still insufficient. Aim of the present study is to 

investigate if the variables identified in a previous 

association study (Knudsen 2010) are confirmed in an 

independent patient population. 

Methods: Data from the Cancer Pain Outcome 

Research Study, a longitudinal observational survey 

on advanced cancer patients involving 123 centres, 

were analysed. In order to replicate the design of the 

European Pharmacogenetic Opioid Study, only 

patients on opioid treatment and only outcomes 

measured at baseline were considered. Average and 

worst pain (both measured on a 0-10 numerical scale) 

along with pain relief (measured on a 0-100% scale) 

were defined as outcomes. Associated variables to be 

tested were breakthrough pain (BP), pain mechanism, 

psychological distress (PD), pain and metastases 

localisation, opioid dose, use of non-opioids, and 

insomnia. 

Results: The sample includes 1562 patients on opioid 

53 

Free 

communication 

sessions

Free 

communication 

sessions 


treatment; 53% males, mean age 64 years and average 

opioid dose assumption 92 mg; 49% had BP. Last 24 

hours average and worst pain means were 4.4 and 6.8, 

respectively. Centre adjusted multivariate regression 

analyses on the three different outcomes confirmed 

insomnia as significant factor associated with all the 

outcomes, BP associated with average and worst pain 

intensities, while PD was significantly associated with 

the three outcomes only in bivariate analyses. 

Conclusion: This study shows the significant role of 

insomnia and breakthrough pain in their association 

with pain intensity, while PD shows a weaker 

relevance that may also be due to a different 

assessment method applied in the present study. 



A Randomised Multi-site, Double-blind, 

Parrallel Arm, Dose Titrated Placebo 

Controlled Study of Subcutaneous Ketamine 

in the Management of Cancer Pain 

Hardy J. 1 , Plummer J. 2 , Rowett D. 3 , Eckermann S. 4 , Shelby- 

James T. 5 , Agar M. 6 , Spruyt O. 7 , Fazekas B. 8 , Currow D. 5 

1 Mater Health Services, Palliative Care, South Brisbane, 

Australia, 2 Flinders Medical Centre, Bedford Park, 

Australia, 3 Repatriation General Hospital, Daw Park, 

Australia, 4 University of Wollongong, Wollongong, 

Australia, 5 Flinders University, Department of 

Palliative and Supportive Services, Daw Park, Australia, 

6 Braeside Hospital, Pallaitive Care, Prairiewood, 

Australia, 7 Peter MacCallum Cancer Centre, Pain and 

Palliative Care, Melbourne, Australia, 8 Repatriation 

General Hospital, Palliative Care, Daw Park, Australia 

Background: Ketamine is a parenteral general 

anaesthetic agent, indicated for the induction and 

maintenance of anaesthesia. The evidence available 

through a wide range of clinical audits and case 

reports suggests a potential role for low dose ketamine 

in the management of refractory or neuropathic pain. 

The published evidence to date does not include an 

adequately powered RCT in palliative care. 

Aim: To compare the efficacy of parenteral ketamine 

versus normal saline when used in conjunction with 

regular analgesics and standard adjuvant therapy in 

the management of chronic uncontrolled pain related 

to cancer or its treatment in terms of: pain relief, 

adverse events, quality of life, performance status, 

health outcomes and health service utilization. 

Study design: A phase III randomised, mulit-site 

double blind, placebo controlled trial of escalating 

dose subcutaneous ketamine over a maximum of 5 

days. Hospital in-patients >18 years of age with 

chronic pain secondary to cancer and/or its treatment 

and Brief Pain Inventory average pain score of ≥3 

despite adequate treatment. 

Primary endpoint: Brief Pain Inventory average 

pain score at start of day 6. 

Analysis: Ketamine will be considered superior to 

placebo if the response rate at start day 6 is 25% 

greater then that of placebo (assuming a placebo 

response rate of 30%). With a type 1 error of 0.05 at 

approximately 85% power, 75 completed patients will 

be required per arm (150 in total). 

Results: The study is currently open for recruitment 

at 9 sites in Australia. Recruitment is expected to be 

completed in December 2010. To date 169 people 

have been randomised, 130 have completed the study 

protocol. Final results will be available by May 2011. 

Conclusion: This Australian, multi-centre, doubleblind, 

randomized controlled study will be the first 

adequately powered study to evaluate the role of 

subcutaneous ketamine in the treatment of cancer 

related pain in a palliative care setting. 



Central Pain Processing in Chemotherapy 

Induced Peripheral Neuropathy 

Cachia E. 1,2 , Selvarajah D. 3 , Hunter M.D. 4 , Snowden J. 5 , 

Ahmedzai S.H. 1 , Wilkinson I.D. 2 

1 University of Sheffield, Academic Unit of Supportive 

Care, Sheffield, United Kingdom, 2 University of 

Sheffield, Academic Unit of Radiology, Sheffield, 

United Kingdom, 3 Sheffield Teaching Hospitals, 

Diabetes, Sheffield, United Kingdom, 4 University of 

Sheffield, Psychiatry & Neuroimaging, Sheffield, 

United Kingdom, 5 Sheffield Teaching Hospitals, 

Department of Haematology, Sheffield, United 


Background: Whilst modern treatments have 

significantly extended life expectancy in multiple 

myeloma, a high incidence of chemotherapy induced 

peripheral neuropathy (CIPN) has evolved. 

Aims: The primary aim is to determine whether 

differences exist in central pain processing pathways 

as assessed by functional Magnetic Resonance 

Imaging (fMRI) during noxious thermal stimulation 

in CIPN and health volunteers. Secondary aims 

include determining the degree to which quantitative 

sensory testing predicts presence and severity of CIPN 

and also to qualitatively assess life with multiple 

myeloma. 

Method: All patients underwent comprehensive 

neurophysiological testing followed by fMRI (3T). 

Heat-pain stimuli were applied to the dorsum of the 

foot and thigh. Brain fMRI datasets were acquired 

during baseline and hot stimuli and analysis was 

performed using Statistical Parametric Mapping. 

Results: We studied 12 myeloma patients and 12 

healthy volunteers. The neurophysiological tests 

showed abnormality in myeloma indicative of 

peripheral neuropathy mainly in the feet. From 

EORTC QLQ-c30, the most frequent symptoms were 

pain and fatigue whilst the worst function scale 

highlighted social function. From EORTC QLQ- 

MY20, patients reported tingling in hands or feet as 

being most troublesome (mean [SD] 3.0 [1.0]) 

followed by feeling drowsy (mean [SD] 2.8 [1.1]). The 

fMRI showed that painful stimuli delivered to the foot 

produced significantly greater thalamic activation 

than thigh stimulation in subjects with CIPN 

compared with healthy volunteers. 

Conclusion: In myeloma CIPN, patients can 

experience severe pain as well as tingling in the 

extremities, in addition to fatigue and drowsiness. 

Imaging indicates that painful stimuli delivered to 

neuropathic-affected and symptom-free sites in CIPN 

evoke differential activation of distinct cortical 

regions, which could reflect abnormal central pain 

processing. 



Effective Titrated Dose of Fentanyl Pectin 

Nasal Spray Remains Consistently Effective in 

the Long Term and Is Not Correlated to 

Background Opioid Dose 

Fallon M. 1 , Galvez R. 2 , Gatti A. 3 , Sitte T. 4 , Filbet M. 5 , 

Brooks D. 6 

1 Western General Hospital, Edinburgh Cancer 

Research Centre, Edinburgh, United Kingdom, 

2 Unidad del Dolor/Hospital Virgen de las Nieves, 

Granada, Spain, 3 Azienda Policlinico Tor Vergata, 

Rome, Italy, 4 Schmerz & PalliativZentrum Fulda, 

Fulda, Germany, 5 Centre Hospitalier Lyon Sud, Pierre- 

Bénite, France, 6 Chesterfield and North Derbyshire 

Royal Hospital NHS Trust, Chesterfield, United 


Aim: Fentanyl pectin nasal spray (FPNS) is a new 

nasal formulation of fentanyl approved in the EU for 

the treatment of pts with breakthrough cancer pain 

(BTCP). Controlled trials confirmed FPNS provides a 

rapid onset of effect with consistent efficacy. This 

analysis examined whether the pt’s around-the-clock 

(ATC) background opioid dose correlated with the 

effective titrated dose of FPNS and assessed long-term 

dose consistency. 

Methods: Pts who experienced 1-4 BTCP 

episodes/day while taking ≥60 mg/day oral morphine 

(or equivalent) for cancer-related pain entered the 16week 

trial directly or after participating in a previous 

study. During the titration phase, an effective dose 

(FPNS 100-800 µg) was defined as that which treated 

two consecutive episodes of BTCP without 

unacceptable adverse events. 

Results: In the modified intent-to-treat population 

(N = 403), 88 (21.8%) and 312 (77.4%) pts 

experienced moderate and severe BTCP episodes, 

respectively, with a mean frequency of 2.81 

episodes/day (range, 1-10 episodes/day). ATC opioid 

medications were primarily oral morphine (59.8%), 

fentanyl (31.5%), oxycodone (13.2%) and methadone 

(9.2%). More than 90% of pts required no increase in 

their initial titrated dose of FPNS at 16 weeks. The 

effective titrated dose of FPNS did not correlate with 

the total daily morphine equivalent dose. 

Furthermore, no correlation was found between the 

oral morphine-only ATC dose and the effective FPNS 

dose. 

Conclusions: FPNS provides a convenient method 

of administration for the management of BTCP. 

Although a correlation could exist between a pt’s ATC 

opioid dose and the effective titrated dose of FPNS, 

such a correlation was not demonstrated in this 

analysis, thus underscoring the importance of an 

initial titration phase for FPNS. However, titration can 

be achieved rapidly to a dose that provides 

consistently effective relief without need for further 

titration in long-term BTCP management. 

Funded by Archimedes Development Ltd. 



Develop Terminal Cancer Patients Tolerance 

to Opioids? 

Carpentier I. 1 , de Schutter H. 2 , Menten J.J. 1 

1 University Hospital Gasthuisberg, Radiation 

Oncology & Palliative Care, Leuven, Belgium, 

2 University Hospital Gasthuisberg, Palliative Care, 

Leuven, Belgium 

Introduction: The fear for tolerance to opioids is a 

common cause for the under use of strong opioids for 

cancer pain. Tolerance is defined as a normal 

physiological response to chronic opioid therapy in 

which increasing doses are required to result the same 

pain relief. This study analysed the use of strong 

opioid doses needed to relief cancer pain of ≥4/10 on a 

numerical rating scale 0-10. 

Patients and methods: The inclusion criteria for 

analysis were 1088 cancer patients, admitted to the 

palliative care unit (PCU) between 9-1999 and 2- 

2010, ≥65 years with no longer treatable disease, who 

died in the PCU. The medical charts of all patients 

were retrospectively analyzed. For each patient 

demographic variables (age, gender, social status), 

disease-related characteristics (primary tumor, 

metastases, co-morbidity) at time of admission, pain 

treatment (intake of opioids before, on admission and 

during hospitalization) and survival time in the PCU 

were registered. The doses of the different opioids 

were recalculated to oral morphine equivalent doses 

(OME). Patients were stratified based on the 

maximum OME daily dose: none, < 60 mg/day, 60- 

299 mg/day, 300-599 mg/day, 600-900 mg/day and > 

900 mg/day. The patterns of mean opioid dose and 

standard deviations ware calculated for each cohort 

group at various time points. 

Results: Relatively stable doses of opioids up to 4 

months before dying could control pain in these 5 

stratified dose level patient groups and only the last 

days before death there was a slight non statistically 

significant increase of opioids. 

Conclusion: This study fails to demonstrate any 

statistical significant increase in the different opioid 

doses over study time suggesting that development of 

tolerance to strong opioids is clinically not that 

important. Therefore is it not justified to postpone 

opioid therapy or to reserve it for the terminal phase 

of life and caregivers should increase the opioid dose 

according to the pain intensity. 



Fentanyl Pectin Nasal Spray: Successful Dose 

Titration in a Broad Range of Patients with 

Breakthrough Cancer Pain 

Torres L. 1 , Reale C. 2 , Lux E.A. 3 , Lynch L. 4 , Revnic J. 5 , 

Davies A. 6 

1 Servicio de Anestesia/Puerta del Mar, Cadiz, Spain, 

2 Sapienza University of Rome, Rome, Italy, 3 St. 

Marien-Hospital, Lünen, Germany, 4 St. James’s 

Institute of Oncology, Leeds, United Kingdom, 

5 Hôpital de l’Hotel Dieu, Paris, France, 6 The Royal 

Marsden NHS Foundation Trust, Surrey, United 


Aim: Breakthrough cancer pain (BTCP) affects most 

cancer patients with chronic pain. Fentanyl pectin 

nasal spray (FPNS) provides superior pain relief 

compared with placebo or oral morphine. An ideal 

BTCP agent should both be easily titratable across a 

wide range of patient types and provide long-term 

effectiveness without the need for an increase in dose. 

This report investigates the successful dose titration of 

FPNS. 

Methods: The FPNS clinical trial programme 

enrolled 511 patients experiencing 1-4 BTCP 

episodes/day while taking ≥60 mg/day oral morphine 

(or equivalent) for background pain. During the openlabel 

titration phase, an effective dose was identified 

that successfully treated two consecutive episodes of 

BTCP without unacceptable adverse events (AEs). 

Results: A broad range of patient types was included: 

>27% were older than 60 years of age, 47% were 

female and 54% were white. Titration failed for FPNSrelated 

reasons in 41 (8.0%) patients: 14 (2.7%) 

because of AEs and 27 (5.3%) because of inadequate 

efficacy. Patients were successfully titrated to 100 µg 


(17.7%), 200 µg (21.8%), 400 µg (32.0%) or 800 µg 

(28.5%) in a minimal number of steps (mean, 2.7). 

Rate of success was consistent across the three 

multinational, multicentre studies at sites in 13 

countries and four continents. Dose titration did not 

vary by country, age or weight, and there was no 

correlation between effective titrated dose and 

background opioid dose. There was a slight tendency 

for men to titrate to higher doses. Treatment-related 

AEs leading to withdrawal were primarily headache, 

nausea and vomiting, consistent with the known 

effects of fentanyl; they were not dose related. 

Conclusions: FPNS provides an easy-to-use and 

convenient method of administration for the 

treatment of BTCP. Furthermore, FPNS is easily 

titrated to an effective dose in a broad range of opioidtolerant 

cancer patients, with only 8% unable to 

titrate for FPNS-related reasons. 


Free Communication – Family 

and Caregivers 



Recognising Dying and the Interplay between 

Patients, Families and Professionals in 

Palliative Home Care 

Pleschberger S. 1 , Wenzel C. 1 , Lindner D. 1 



Austria 

Background & aims: There is evidence that a 

necessary agreement among the care providers 

involved to change from curative treatment to mainly 

palliative care occurs at a very late stage, yet little is 

known how this agreement is come to. The role of 

patients and their families in this process has been 

neglected so far, though this is a crucial issue, 

especially in the home care setting. 

Method: An ethnographic study was done in the 

field of specialist palliative home care with the aim to 

better understand the process of recognising dying in 

its holistic dimension. Data collection included 

observations of palliative care specialists’ visits at 

home from patient’s admission to the service until 

death of patient (n=15), as well as interviews with 

service professionals and bereaved carers, additionally 

records of these patients were analysed. Following a 

grounded theory approach we applied theoretical 

sampling and several coding procedures supported by 

Atlas/ti software for analysis. 

Results: While family carers as well as professionals 

tended to identify a certain “turning point” of 

recognising dying when asked in retrospect, 

observation data and documentation do not support 

such clarity. The latter show the importance of the 

dynamics of social relationships within families and 

among professionals, caregivers and patients. These 

dynamics are fostered by individual patterns of 

awareness, acknowledgement and emotional 

involvement as regards dying. All this shapes 

recognition of clinical symptoms and 

communication and leads to ambiguities. 

Conclusion: Recognizing dying has to be 

understood as a process which affords negotiation of 

different perspectives at play concerning the 

perception and understanding of clinical symptoms 

and their impact as markers for progression of disease 

between patients, families and professionals. A 

sensitive approach and high communication skills are 

necessary to succeed in this endeavour. 

This study was funded by the Austrian Science Fund. 



Proactive Palliative Care Planning: 

Prospective Study of the Impact on Care 

Givers Burden, Psychological Well-being and 

Satisfaction with Care 

Thoonsen B. 1 , Engels Y. 1 , Groot M. 1 , Reitsma N. 1 , Rijswijk 

E.V. 2 , Weel C.V. 2 , Verhagen S. 1 , Vissers K. 1 



Nijmegen, Netherlands, 2 Radboud University 

Nijmegen Medical Centre, Primary Health Care, 


Research aims: How does burden, psychological 

well-being and satisfaction with care change over 

time in family caregivers of palliative patients that 

receive structured, holistic, proactive palliative care 

with the GP as coordinator. 

Study design and methods: As part of an RCT 

general practitioners in the intervention group were 

asked to identify patients with cancer, COPD or CHF 

in an earlier stage, that might profit from a palliative 

care approach. For each included patient, the GP 

made a proactive palliative care plan with attention 

for actual and expected problems regarding physical 

symptoms, care giving and daily living, social context 

and finances, existential and psychological issues, and 

daily living. Each care plan was discussed with a 

specialist in palliative care. 

The closest family caregiver (mostly the spouse) was 

asked to fill in a questionnaire at T0, 3 months, 5 

months and 6 months after inclusion. The 

questionnaire consisted of the EDIZ and CRA-D 

(caregiver burden), the HADS and the MITTZ 

(satisfaction with care). Additionally, at 5 months, as 

open question we asked each family caregiver what 

the advantages of this proactive palliative care have 

been. 

We asked the GPs to inform us at what dates the 

patients died. 

Analyses: The period between filling in a 

questionnaire and death of the patient were 

computed. We studied changes in quality of life, 

satisfaction with palliative care, psychological wellbeing, 

care consumption over time. Answers on the 

open questions were qualitatively analysed with Atlas. 

Results: At T0 43 family caregivers filled in the 

questionnaire, and this decreased to 13 after six 

months. Results will be available in January 2011. 

Conclusion: This study will give insight in how 

caregiver burden, psychological well-being and 

satisfaction with care of family caregivers of palliative 

patient who get proactive, holistic palliative care will 

change in time. 



Family Caregiver Participation in Palliative 

Care: Effects of Instruction in Simple Touch 

and Massage Methods for Comfort and Quality 

of Life 

Collinge W.B. 1 , Kozak L. 2,3 

1 Collinge and Associates, Research, Kittery, ME, 

United States, 2 VA Puget Sound Health Care System, 

Center of Excellence in Outcomes Research in Older 

Adults, Seattle, WA, United States, 3 University of 

Washington, Health Services, Seattle, WA, United 

States 

Objectives: Touch-based interventions such as light 

touch and simple massage have been shown to reduce 

pain, nausea, fatigue and other symptoms, but 

patients face obstacles to accessing such intervention. 

This presentation reports on two initiatives to study 

the training of family members in how to use simple 

touch and massage to provide comfort and symptom 

reduction for loved ones receiving supportive or 

palliative cancer care at home. 

Methods: 

Initiative 1: An NCI-sponsored, community-based, 

randomized controlled trial evaluated effects of a 

multimedia instructional program for 97 family 

caregiver/patient dyads in use of simple touch and 

massage techniques at home. The control condition 

was reading to the patient. Instruction was delivered 

by a DVD and illustrated manual teaching safety 

precautions, techniques for comfort and relaxation, 

and practice on home furniture. The multi-ethnic 

sample used versions of the program in English, 

Spanish and Chinese. Patients recorded pre- and postsession 

ratings of pain, fatigue, stress/anxiety, nausea, 

depression, and “other” symptoms. 

Initiative 2: At the Veterans Administration (VA) 

Hospital in Puget Sound (Seattle), an 8-week 

uncontrolled feasibility trial is under way using the 

DVD program with 20 cancer patients and their 

caregivers. The study will evaluate whether this form 

of caregiver education is feasible for a VA population. 

Results: In the NCI project, mean symptom 

reductions after massage ranged from 29-44% versus 

12-28% after reading. Caregivers delivered a mean of 

4.1 massages of 18 minutes over 20 weeks, and 

showed significant gains in confidence and comfort 

with using touch. Current status and preliminary data 

of the VA project will be reported. 

Conclusions: Family members may be an untapped 

resource for uncomplicated but effective supportive 

care for cancer patients at home. Further studies are 

needed to determine optimal use of this intervention 

in diverse populations and settings. 





How Can We Help them Cope? A Structural 

Model to Examination of the Mediation 

Effects of Culture on Work Group Stress, 

Burnout, Compassion Fatigue and 

Compassion Satisfaction in Palliative Care 

Professionals 

Hemsworth D. 1,2 , Kazanjian A. 3 , Cadell S. 4 , Slocum-Gori 

S. 3 , Chan W. 3 

1 Nipissing University, School of Business, North Bay, 

ON, Canada, 2 Nipissing University, North Bay, ON, 

Canada, 3 University of British Columbia, Vancouver, 

BC, Canada, 4 Wilfrid Laurier University, Waterloo, 

ON, Canada 

Background: This study focuses on establishing 

Canadian baseline information on the palliative care 

workforce and their work, including factors that foster 

a positive response in the face of constant exposure to 

grief and bereavement. There is a paucity of research 

that looks into ways to increase positive while 

reducing the negative effects of this demanding work 

setting. This research is unique in that it shows how 

supportive healthcare professionals’ and patients’ 

heritage/cultural identity, accomplishes just that, 

while mediating the effect of workgroup stress. 

Study objective: To understand the direct and 

indirect effects on palliative caregivers experiencing 

workplace stress and how the supporting of cultural 

identity factors can increase their quality of life and 

that of the patients they serve. 

Method: Survey data was collected from professional 

caregivers using the ProQol (Professional quality of 

Life), NUCAT and Workgroup culture instruments. 

Measures of workgroup cultural differences, burnout, 

compassion fatigue and compassion satisfaction as 

well as a measure of micro, meso and macro cultural 

beliefs were used. There were a total of 630 individual 

professional caregiver respondents, representing 

66.5% of organizations which are members of the 

Canadian Hospice Palliative Care Association. 

Structural equation modeling was used to test the 

interactions among the aforementioned constructs 

and to test this study’s multiple hypotheses. 

Results: The proposed structural equation model fit 

well (as indicated by the Chi-square test and fit 

indices). It was found that the stress due to workgroup 

culture differences increased compassion fatigue and 

burnout while decreasing compassion satisfaction. 

Increased levels of compassion fatigue increased 

burnout. Stronger support for patient and caregiver 

cultural identity mediated the effects of stress 

reducing burnout, and compassion fatigue while 

increasing caregiver compassion satisfaction 

(significant p< .05). 



Hospital Based Psycho-educational 

Intervention for Family Caregivers of 

Palliative Care Patients 

Hudson P. 1,2 , Trauer T. 1,3 , Lobb E. 4 , Williams A. 5 

1 St Vincent’s Hospital & The University of Melbourne, 

Centre for Palliative Care, Fitzroy, Australia, 2 Queen’s 

University, Belfast, United Kingdom, 3 Monash 

University, Clayton, Australia, 4 University of Sydney, 

Sydney, Australia, 5 Curtin University, Perth, Australia 

Aims: Although family caregivers are acknowledged 

as valid service recipients of palliative care, many have 

unmet needs and there are limited evidence based 

supportive interventions. The purpose of this project 

was to develop and test the effectiveness of a psychoeducational 

group education program, delivered in 

the in-patient setting, designed to prepare family 

caregivers for the role of supporting a relative 

currently receiving hospital based palliative care. 

Methods: A pilot phase was conducted to develop 

the intervention and explore its utility. Thereafter the 

single session intervention was delivered in three 

palliative care units in three states of Australia and its 

effectiveness examined using a pre-test, post-test 

design. Outcome variables included caregiver: 

preparedness, competence, unmet needs and 

psychological wellbeing. 

Results: The pilot phase revealed that the 

intervention was feasible, acceptable and applicable. 

With regard to effectiveness of the intervention: 126 

participants completed Time 1 data and 107 (84.9%) 

also completed Time 2 data (post intervention). There 

were statistically significant improvements in 

caregivers’ sense of preparedness, competence and a 

significant reduction in unmet needs. 

55 

Free 

communication 

sessions

Free 

communication 

sessions 


Conclusions: This study reinforces the notion that 

psycho-educational interventions for this population 

can be both feasible and effective. It is recommended 

that the intervention undergo further empirical 

inquiry. 

Funding: National Health and Research Council 

(Australia) 



How Can We Improve Formal Family 

Meetings? A Survey of Staff in Two Specialist 

Palliative Care Units 

Clifford M. 1 , Murphy I. 1 , Rhatigan J. 2 , Murphy R. 1 , 

Mcloughlin K. 2 , O’ Farrell G. 1 , Richardson M. 2 , Sheridan 

J. 2 , Wallace E. 2 , Conroy M. 2 , O’ Brien T. 1 

1 Marymount Hospice / St Patrick’s Hospital, Cork, 

Ireland, 2 MIlford Care Centre, Limerick, Ireland 

The value of formal family meetings as a means of 

facilitating good communication between staff and 

patients’ families is widely acknowledged. Audits, 

conducted independently, in two specialist palliative 

care units have identified practice deficits in the 

conduction of family meetings. Staff cooperation is a 

vital part of the success of interventions to address 

these deficits. This questionnaire survey of clinical 

staff in two specialist palliative care inpatient units 

examines staff perceptions of deficits in current 

practice, their self-determined ability to co-facilitate 

family meetings, and the identification of potential 

opportunities for improvement of practice and 

documentation of family meetings. The response rate 

was 96% (93/97 questionnaires returned). The 

majority of staff rated conduction of family meetings 

in their unit as “very good” or “good” (74.2%). 

However, one in five staff reported that meetings were 

often too long. The other main areas of staff concern 

related to the lack of pre-meeting staff preparation 

(33.3%); poor chairing (16.1%); poor liaison with 

home care, day care and family doctors (16.1%). Staff 

confidence in their ability to participate in family 

meetings varied considerably and it was noted that 

83.9% had received no training in chairing family 

meetings. 35.5% had never observed a family meeting 

prior to participating in one. When asked to rank four 

possible practice interventions in order of 

importance, 51.6% listed family meeting specific 

communication skills training for staff as being most 

important. It is clearly acknowledged by respondents 

that there is room for improvement in relation to 

conduction of family meetings. There appears to be a 

lack of confidence and training, both formal and 

informal. Communication skills training has been 

identified as a target for future improvements in 

practice. 


Symptom Management 



Do the Trajectories of Disturbed Bowel Habits 

Differ over Time in Palliative Care? 

Clark K. 1 , Smith J. 2 , Currow D.C. 3 

1 Calvary Mater Newcastle, Palliative Care, Waratah, 

Australia, 2 Silver Chain Palliative Care Service, 

Osborne Park, Australia, 3 Flinders University, 

Palliative Care, Adelaide, Australia 

Aims: The work aims to determine if there are 

differences in the intensity of disturbed bowel habits 

by diagnosis over time in a consecutive palliative care 

cohort. 

Methods: Patients referred to a Palliative Care Service 

over a period of 6.33 years (until April 2010) had their 

bowels habits evaluated at every clinical encounter 

until death with a numeric rating score. Diagnoses 

were categorised: upper gastrointestinal cancer; lower 

intestinal cancer; secondary cancer to organs 

associated with the gut; primary cancers of organs 

associated with the gut; other cancers; non-malignant 

diseases at five time points (90±3 [T5], 60±3 [T4], 30±3 

[T3], 7±2 [T1]), < 4 [T1] days before death [T0]). Group 

differences were assessed using analysis of variance. 

Regression models defined significant changes in 

mean bowel habits disturbance intensity. 

Results: For 7,772 patients, data were collected from 

174,783 visits. Overall mean bowel disturbance scores 

increased over time, but not significantly. No 

differences were identified between cancer vs non- 

cancer groups. Within the cancer groups, significantly 

higher scores were noted in the upper GI group 30 

days before death (p=0.013). Stratifying the bowel 

scores into zero, low (1-3), moderate (4-6) and high (7- 

10) revealed a decrease in the percentages with a score 

of zero and an increase in those falling into the 

moderate to high range (p< 0.001). In the last four 

days of life, the percentage of patients who scored zero 

increased again. 

Conclusions: The prevalence of disturbed bowel 

habits increases as death approaches regardless of 

whether people have malignant or non-malignant 

diseases. However, the very final days of are 

remarkable for the fact that disturbed bowel habits are 

no longer reported as a problem even if earlier severe 

dysfunction had been reported. 



Blood Transfusion Near the End of Life: A 

Systematic Review 

Preston N.J. 1,2 , Hurlow A. 3 , Brine J. 4 , Bennett M. 1 


End of Life Care, Lancaster, United Kingdom, 

2 University of Manchester, School of Health and 

Nursing, Manchester, United Kingdom, 3 St James 

University Hospital, Palliative Care Team, Leeds, 

United Kingdom, 4 Lancaster University, Lancaster, 


Background: The administering of blood to 

patients at the end of their life has become 

commonplace with more patients receiving 

transfusions in the face of diminishing blood supplies 

and increasing costs. The most common indication 

for blood transfusion in end of life care is anaemia 

accompanied by fatigue or breathlessness. Anaemia 

occurs in 68-77% of patients with advanced disease. 

Cost per transfusion for a patient receiving 2-3 units 

of blood is £570 (€670). 

Research aim: To synthesise existing evidence on 

benefits and harms of blood transfusion near the end 

of life. 

Study design: A systematic review was registered 

with the Cochrane Pain and Palliative and Supportive 

Care (PaPaS) Review Group. The review identified 

studies from seven databases that evaluated the role of 

blood transfusion in end of life care. MESH terms used 

were ‘blood transfusion’, ‘palliative care’ and ‘hospice 

care’. 

Results: No randomised controlled trials were found. 

Seven before-and-after studies were identified and 

pooled estimates from four showed that 7% of 

patients received a blood transfusion. Transfusions 

can occur within a few days of death; 14% of patients 

in one study had died within a week, and 16% died 

within one month. Symptomatic benefit may occur 

for about 51-76% of patients one week following 

transfusion though any benefits appear to have 

diminished by 15 days. 

Conclusion: The contribution of anaemia to fatigue 

at the end of life is probably much less than that in 

early stage disease. The difference between prevalence 

of anaemia (about 70%) and rate of transfusion (about 

7%) suggests that most patients receive other 

strategies to manage their symptoms but it is not clear 

on what basis these decisions are made. Also a reliable 

‘dose-response’ relationship for transfusion does not 

exist and so predicting which patients will respond or 

benefit is challenging. 

Further trials need to be conducted to evaluate the 

role of blood transfusion near the end of life. 



EMG-EEG Signal Coherence Impaired in 

Cancer Related Fatigue 

Davis M. 1 , Yue G. 1 , Seyidova-Khoshknabi D. 1 , Walsh D. 1 

1 Cleveland Clinic, Cleveland, OH, United States 

Introduction: Recently, we reported that 

neuromuscular junction (NMJ) propagation is 

impaired in cancer-related fatigue (CRF) (Yavuzsen et 

al. J Pain Symptom Manag, 38:587-96, 2009). Based on 

this we hypothesized that signals from the central 

nervous system (proximal to NMJ) would experience 

transmission difficulties distal to NMJ, which may 

lead to reduced functional corticomuscular coupling 

during voluntary muscle contraction. 

Method: Fourteen patients with advanced solid 

cancer and significant CRF and 14 age- and gendermatched 

healthy controls performed a sustained 

isometric elbow flexion contraction of the right arm 

at 30% maximal level (S30) until self-perceived 

exhaustion. High-density (128 channels) scalp 

electroencephalographic (EEG) data and 

electromyographic (EMG) signals of the elbow flexor 

and extensor muscles were recorded during the S30. 

Coherence between the EEG and EMG signals was 

determined during the first half (non-fatigue) and 

second half (fatigue) of the S30. 

Results: CRF patients exhibited lower EEG-EMG 

coherence (P< 0.05) at beta frequency band (15-35 Hz) 

during the S30. Coherence did not decrease as much 

in CRF as in controls under the condition of muscle 

fatigue. 

Discussion: CRF was associated with weakened 

functional coupling between the brain and muscle 

activities in a sustained submaximal motor activity. 

Because muscle fatigue was less significant in CRF, this 

explains why fatigue influenced EEG-EMG coherence 

less in CRF. Impairment in NMJ propagation function 

in CRF contributes to diminished corticomuscular 

signal coupling during voluntary motor activities. 

Conclusion: EMG-EEG coherence is impaired in CRF. 



MRSA and Palliative Care: The Straw that 

Broke the Camel’s Back? 

Gleeson A.B. 1 , Larkin P.J. 1,2 

1 Our Lady’s Hospice and Care Service, Education and 

Research Centre, Dublin, Ireland, 2 School of Nursing, 

Midwifery and Health Systems, University College 

Dublin, Dublin, Ireland 

Aims: The purpose of this study was to gain a greater 

understanding of the impact that an MRSA diagnosis 

has on patients with advanced cancer and their 

families, as little is known about this phenomenon. 

To date, research on MRSA in the palliative care 

setting has had a quantitative focus. No study has yet 

focused on the psychological impact of MRSA on 

patients with advanced cancer. This study is part of a 

larger study, aiming to assess the overall impact of 

MRSA in specialist palliative care. 

Methods: This study used a qualitative approach. 

Interviews were conducted with a purposive sample: 9 

with patients and 9 with family members (n=18). 

Patients with advanced cancer either admitted to the 

specialist palliative care (SPC) unit or receiving care 

from the SPC team in the hospital setting, who had a 

laboratory confirmed diagnosis of MRSA colonisation, 

were considered for inclusion in the study. Family 

members of these patients were also considered for 

inclusion. Data were managed using NVIVO8, a 

computer assisted qualitative data analysis software 

(CAQDAS) package, and analysed using Framework 

Analysis. 

Results: Data saturation was achieved. A number of 

themes emerged. The key finding (theme) in this 

study was the magnitude of the psychological impact 

of an MRSA diagnosis, as many participants reflected 

the comparable devastation that both a cancer and an 

MRSA diagnosis could cause. Another theme was the 

need for transparency when patients are found to be 

MRSA positive, as participants reflected that this 

helped them in dealing with the news. 

Conclusions: MRSA has a significant impact on 

advanced cancer patients and their families. This 

impact may be underestimated but early and careful 

face to face explanation about MRSA and its 

implications can help patients and their families to 

cope better with it. This and other findings will aid 

policy development in relation to MRSA management 

and infection control in specialist palliative care 

settings. 



Falls: Is this Geriatric Giant an even Bigger 

Issue in Palliative Cancer Care? 

Stone C.A. 1 , Lawlor P.G. 2 , Nolan B. 1 , Kathleen B. 3 , Kenny 

R.A. 4 

1 Our Lady’s Hospice and Care Services, Education & 

Research Department, Dublin, Ireland, 2 Bruyere 

Continuing Care Unit, Palliative Care Department, 

Ottawa, ON, Canada, 3 Trinity College Dublin, 

Department of Pharmacology and Therapeutics, 

Dublin, Ireland, 4 Trinity College Dublin, Department 

of Gerontology, Dublin, Ireland 

Introduction: Fall rates reported in the literature, 

from inpatient palliative care and oncology settings 

greatly exceed average falls rates in acute and 

community hospitals as per nationally collated data 


from the UK. Incidence of falling in patients with 

advanced cancer over longer time periods or in 

community dwelling patients is not known. The aim 

of this study is to prospectively identify the incidence 

of falls in people with advanced cancer. 

Methods: Consecutive adult admissions to 

community and inpatient palliative care services with 

a diagnosis of metastatic or loco-regionally advanced 

cancer and who are able to sit-to-stand and mobilise 

unassisted, are recruited. Patients undergo a research 

assessment & questionnaire at baseline. Outcome 

measure is time to fall in days, determined by weekly 

telephone contact for 6 months or until time of fall or 

death if occur within 6 months. Descriptive statistics 

were compiled and time to first fall examined using 

survival analysis methods, including Kaplan Meier 

plots and log rank test. 

Results: Since Nov 2008-Sep 2010 153 patients have 

been recruited. 53% were male, mean age 

67.48(±12.72) years. 132 patients have completed 

follow-up, of whom 68 (51.5%) experienced a fall. The 

incidence density of falls was 2776 per 1000 person 

years. Median time to fall was 87 days (95% CI; 7.6- 

166.4) for persons aged < 60 years and 80 days (95% 

CI; 50-110) for those aged ≥60 years or older (ń2 =0.3 

p=0.56). 44% of falls occurred in a hospital/hospice 

inpatient setting, 49% resulted in injury and 4.4% of 

all falls resulted in dislocation or fracture. 

Conclusions: The observed incidence density of falls 

of 2776 per 1000 patient years is more than double 

that reported for healthy older persons. Our findings 

suggest that the exceptionally high incidence of falls 

observed is related to factors other than the 

demographic profile of cancer. 

Funded by the Health Research Board and Irish 

Hospice Foundation. 



Do Patients with Cancer, COPD, Heart Failure 

and MND Experience Breathlessness 

Differently? 

Gysels M.H. 1,2 , Higginson I.J. 2 

1 University of Barcelona, Barcelona Centre for 

International Health Research, Barcelona, Spain, 


Care, Policy and Rehabilitation, London, United 


Aim: Breathlessness is one of the core symptoms, 

particularly persistent and frequent, towards the end 

of life (EoL). There is no evidence of how the 

experience of breathlessness differs across conditions. 

We aim to compare the experience of breathlessness 

in four conditions sharing heavy symptom burdens, 

poor prognoses, high breathlessness rates and 

palliative care needs. 

Method: A qualitative study with a purposive sample 

of 44 patients with cancer, COPD, heart failure or 

MND, and experiencing daily problems of 

breathlessness. Patients were recruited from a hospital, 

and the community. Data were collected with semistructured, 

in-depth interviews. Breathlessness was 

compared according to six components derived from 

explanatory models and symptom schemata, first 

within and then across groups. Frequency counts were 

used to check the qualitative findings. 

Results: Breathlessness was experienced differently 

in the four conditions, as a physical sensation within 

the constraints of the illness and patients’ experiences 

with health care and social environment. In cancer, 

breathlessness functioned as a reminder of patients’ 

mortality despite the hopes they put in surgery, and 

new drugs. For COPD patients, breathlessness was a 

self-inflicted symptom. Its insidious nature and 

response from services disaffirmed their experience 

and gradually led to greater disability. Patients with 

heart failure described breathlessness as worsening 

the negative effects of other symptoms. In MND 

breathlessness meant that the illness was a dangerous 

threat to patients’ lives. COPD and heart failure had 

similar experiences. 

Conclusion: The findings of this study are important 

for the development of assessment tools for 

breathlessness; they suggest changes to services tailored 

to patients needs, within a palliative care framework 

with multidisciplinary approaches, and self-care. 

Tackling breathlessness will reduce its economic 

burden and the suffering it causes at the EoL. 

Free Communication – Ethics I 



Cardio Pulmonary Resuscitation (CPR) Occurs 

Rarely at Specialized Palliative Care Units in 

Sweden Rarely Occurs 

Eckerdal G. 1 , Lundström S. 2,3 

1 Kungsbacka Hospital, Palliative Care Team, 

Kungsbacka, Sweden, 2 Palliative Care Unit 

Stockholms Sjukhem Foundation, Stockholm, 

Sweden, 3 Department of Oncology Pathology, 

Karolinska Institute, Stockholm, Stockholm, Sweden 

Established practices about CPR and DNR (Do Not 

Resuscitate) are designed to assist all patientens with 

unexpected cardiac arrest when possible. For patients 

in palliative care routines vary and are occasionally 

confusing. In order to prepare for national guidelines, 

a survey was carried out at 24 Swedish palliative care 

units in 2010, within the framework of the national 

palliative research network, PANIS. 

Method: A survey regarding routines and practices 

around CPR and DNR was sent to each unit. A 

descriptive analysis was performed by authors. 

Both palliative home care teams and hospitalbased 

teams participated. 

Results: In the course of 1 year, team members cared 

for 6290 patients; CPR was performed 6 times. None 

of these patients regained heart activity. 

10 units had written guidelines for DNR, 14 applied 

unwritten informal practices, 10 had close access to a 

defibrillator. 

19 of the teams reported doctors being satisfied with 

current practices, 16 teams reported satisfied nurses. 

In a cross-sectional part of the survey, a total of 1126 

enrolled patients were registred at the units. Case 

records showed that 37% of the patients had a well 

documented decision of DNR. 

Team members assessed 58% of the patients as being 

capable of taking part in the decision making process, 

(psychologically and mentally). Of these, patients had 

taken part in the decision in 26% cases, close relatives 

had been involved in 24% cases. 

Discussion: This study shows that CPR is hardly ever 

performed in Swedish specialized palliative care. 

When performed, CPR has not proved medically 

succesful. Decisions of refraining from CPR in 

palliative care vary extensivesly between different 

units. Generally, members of staff however, are 

satisfied with established practices. It appears a matter 

of concern to discuss further to what extent and in 

what way patients and their close relatives are to be 

involv ed in the decision making process. 



Suffering and Euthanasia: A Qualitative Study 

of Cancer Patients’ Perspectives 

Karlsson M. 1,2 , Milberg A. 2,3,4 , Strang P. 1 

1 Karolinska Institutet/Stockholms Sjukhem, 

Department of Oncology-Pathology, Stockholm, 

Sweden, 2 Linköping University Hospital, Unit of 

Advanced Palliative Home Care, Linköping, Sweden, 

3 Linköping University, Department of Social and 

Welfare Studies, Linköping, Sweden, 4 Palliative 

Education and Research Centre in the County of 

Östergötland, Norrköping, Sweden 

Introduction: Deliberations on euthanasia are 

mostly theoretical, and often lack first-hand 

perspectives of the dying patients. Suffering is a 

frequent argument in favour of euthanasia in debates, 

but how dying patients perceive this is less known. 

The aim of this study was to explore the perspectives 

of euthanasia in relation to suffering in dying cancer 

patients. 

Method: 66 patients with cancer in a palliative phase 

were selected through maximum-variation sampling 

and interviewed in-depth. The interviews were 

analyzed with inductive qualitative content analysis 

with no pre-determined categories. 

Results: The informants expressed different 

positions on euthanasia, ranging from support to 

opposition, but the majority was undecided due to 

the complexity of the problem. Core concepts in the 

patients’ perspective on euthanasia in relation to 

suffering were meaning, fear of pain and trust in help. 

Some argued that euthanasia was preferred to 

ongoing life with suffering, when 

1) suffering was perceived as meaningless, 

2) fear of severe pain, originating from multiple 



dimensions, or 

3) mistrust in the possibility to receive help. Others 

argued that suffering never could motivate 

euthanasia, due to 

1) there is always meaning to life, and even suffering is 

meaningful, 

2) there is no intolerable suffering due to bodily or 

psychological adaptation reducing suffering, which 

was personally experienced by informants and 

3) trust in help and support from health care to reduce 

future suffering. 

Conclusion: Dying cancer patients with a 

confidence in possibilities to receive help and to 

personally cope in future difficult situations, oppose 

euthanasia due to suffering, in contrast to patients 

with fears of pain, meaninglessness and mistrust to 

receive help, who advocate euthanasia due to 

suffering. This indicates a need for palliative care to 

address issues of trust, fear and meaning. 



Changes in Palliative Care Physician Attitudes 

and Beliefs Regarding Communication with 

Terminally Ill Cancer Patients: A Latin 

American Survey One Decade Later 

Torres-Vigil I. 1,2 , Eisenchlas J. 3 , De Lima L. 3 , de la Rosa A. 4 , 

Torres-Yaghi Y. 5 , Bruera E. 6 

1 Graduate College of Social Work, The University of 

Houston, Houston, TX, United States, 2 The University 

of Texas M. D. Anderson Cancer Center, Department 

of Palliative Care and Rehabilitation Medicine, 

Houston, TX, United States, 3 Latin American 

Association for Palliative Care, Buenos Aires, 

Argentina, 4 MD Anderson Cancer Center, Center for 

Research on Minority Health, Houston, TX, United 

States, 5 George Washington Medical School, 

Washington, DC, United States, 6 MD Anderson 

Cancer Center, Houston, TX, United States 

Aims: To compare the attitudes and beliefs of 

palliative care physicians regarding communication 

with terminally ill cancer patients to those identified 

one decade earlier. 

Methods: Two hundred palliative care physicians 

from 16 Latin American nations were surveyed in 

2010. Results were compared to findings from a 

survey conducted in a similar, smaller sample in 2000. 

Bivariate analyses using Chi-square tests and 

correlations were conducted to compare responses 

across both time points. 

Results: Two hundred of 376 physicians completed 

the 2010 survey. Most physicians (> 92%) in both 

2010 and 2000 believed cancer patients should be 

informed of their diagnosis. However, the proportion 

of physicians reporting that at least 60% of their 

patients knew of their diagnosis increased 

significantly (52% to 75%, P= 0.014). Physician 

support for patient knowledge regarding the terminal 

stage of their illness rose over this period (P=0.029), as 

did the proportion of physicians reporting that at 

least 60% of their patients knew their terminal status 

(24% to 52%, P=0.009). Approximately twofold 

increases were also detected in the proportion of 

physicians indicating that at least 60% of patients 

(P=.022) and families (P=.018) wanted to know the 

terminal stage of illness. At both time points, the 

majority of physicians agreed that shared decisionmaking 

(SDM) would be most appropriate in their 

workplace and a trend towards increased SDM was 

detected (P=.166). Finally, physicians in 2010 were 

more likely to support autonomy and beneficence 

over justice in contrast to their previous support of 

beneficence and justice over autonomy. 

Conclusion: The findings suggest that there has 

been a significant shift towards enhanced disclosure 

in communication preferences and practices 

regarding cancer diagnosis and prognosis in Latin 

America over the past 10 years. This change in 

patterns of inclusiveness and disclosure most likely 

reflects the growth of palliative care in the region. 

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Not All Doctors See Palliative Sedation at the 

End of Life as Less Burdensome than 

Euthanasia 

van de Vathorst S. 1 , Schermer M. 2 

1 Erasmus MC, University Medical Center, Medical 

Ethics and Philosophy, Rotterdam, Netherlands, 

2 Erasmus MC, University Medical Center, Rotterdam, 

Netherlands 

Research aims: In 2009 the Dutch Medical 

Association published a new guideline for palliative 

sedation. Palliative sedation (PS) is practiced in about 

10% of all deaths in the Netherlands. However in the 

Netherlands euthanasia is also allowed under strict 

conditions. There are indications that euthanasia is 

too burdensome for some physicians, and some stop 

performing euthanasia altogether. We wanted to find 

out what the experiences of Dutch general 

practitioners are regarding the burden of providing 

palliative sedation versus euthanasia. 

Study design and methods (selection criteria, 

variables, statistics): This study is part of a large 

nation-wide study on knowledge, opinions and 

experiences of end of life treatments. We performed 

15 in depth interviews with Dutch general 

practitioners. In these open interviews they were 

asked about their experience with both euthanasia 

and palliative sedation. The issue of relative burden 

and preference for one or the other was brought up. 

All interviews were typed verbatim and analysed 

using Atlas-Ti, using the method of grounded theory. 

Results: There were great differences between 

physicians with regard to the burden experienced 

when providing palliative sedation at the end of life 

and the burden of euthanasia. For some physicians 

both acts counted as equally burdensome, others 

showed a great preference for palliative sedation. 

Those who found palliative sedation less burdensome 

often gave as a reason that sedation typically involves 

a peaceful, quiet and natural death. Those who do not 

experience less burden state that sedation involves a 

final goodbye from loved ones that is similar in 

euthanasia. 

Conclusion: Dutch general practitioners differ as to 

whether they experience palliative sedation as equally 

or as less burdensome than euthanasia. Based on the 

experiences of our respondents palliative sedation 

cannot be regarded as necessarily a less burdensome 

act for the doctor to perform at the end of life than 

euthanasia. 



Shifts in Patient Involvement in End-of-Life 

Decisions Following Legal Changes Promoting 

Patient’s Autonomy in Belgium 

Bilsen J. 1,2 , Chambaere K. 2 , Cohen J. 2 , Mortier F. 3,4 , Deliens 

L. 2,5 

1 Vrije Universiteit Brussel, Public Health, Brussel, 

Belgium, 2 Ghent University & Vrije Universiteit 

Brussel, End-of-Life Care Research Group, Brussel, 

Belgium, 3 Ghent University, Bioethics Institute 

Ghent, Ghent, Belgium, 4 Ghent University & Vrije 

Universiteit Brussel, End-of-Life Care Research Group, 

Ghent, Belgium, 5 VU University Medical Center, 

Department of Public and Occupational Health, 

EMGO Institute for Health and Care Research, 

Expertise Center for Palliative Care, Amsterdam, 

Netherlands 

Background: Patients’ participation in decisionmaking 

is integral to palliative care. In Belgium, laws 

on patient rights, palliative care and euthanasia, 

passed in 2002, all promote patient autonomy and 

self-determination. This study aims to examine 

changes in rate of patient involvement in end-of-life 

decisions before and after these legal initiatives, and 

to identify patient groups more at risk of not being 

involved. 

Method: In 2007 we repeated a postal survey, 

previously conducted in 1998, among physicians 

certifying a representative sample (n=6927) of death 

certificates in Flanders, Belgium. Physicians answered 

questions regarding end-of-life decision-making. 

Results: Response rates were 58% (2007) and 49% 

(1998). Overall rate of patient involvement in 

decisions rose from 20% in 1998 to 26% in 2007. 

Involvement went from 17% to 20% for nontreatment 

decisions, from 19% to 24% for pain 

alleviation with double effect, and from 35% to 63% 

for life-ending drug use. If not involved, 9 out of 10 

patients were deemed not competent, mostly due to 

unconsciousness or dementia. But also considerations 

such as “being in the patient’s best interest” or 

“discussion doing more harm than good” were often 

mentioned as reasons for not involving the patient. 

Mostly relatives and/or colleagues were consulted 

instead. Involvement in decision-making remained 

through the years less likely for elderly patients (80+ 

yrs), non-cancer patients and patients dying in an 

institution. 

Discussion: The legal changes in Belgium were 

followed by an only modest increase in patient 

involvement in all types of end-of-life decisions, 

suggesting several further steps are needed, such as a 

focus on physician-patient communication in 

training programs, or advance care planning 

initiatives. The found differences in involvement 

between patient groups, even for non-clinical 

characteristics such as patient age, is an indication of 

possible inequalities in end-of-life care and also needs 

to be addressed. 



The Acceptance of Euthanasia by the General 

Public in 39 European Countries 

Van Landeghem P. 1 , Cohen J. 1 , Deliens L. 1 , End-of-Life 

Care Research Group, Ghent University & Vrije Universiteit 

Brussel 

1 Vrije Universiteit Brussel, Brussels, Belgium 

Aim: Euthanasia remains a heavily debated practice 

throughout Europe. This study describes to what 

extent euthanasia is accepted by the general public in 

39 European countries. 

Method: A preliminary release of the fourth wave 

(2008) of the European Value Survey (EVS) was used, 

including 39 of the 46 participating countries 

(N=56,210). Acceptance of euthanasia, described in 

the questionnaire as “terminating the life of the 

incurable sick”, was measured on a rating scale 

ranging from 1 (“Never justified”) to 10 (“Always 

justified”). A relative frequency distribution, mean 

acceptance score (M) and standard deviation (SD) 

were calculated for each country. 

Results: The highest mean acceptance scores were 

found in Denmark (M = 7.9, SD = 0.7), Belgium (M = 

6.8, SD = 2.6), France (M = 6.7, SD = 2.8), the 

Netherlands (M = 6.6, SD = 2.8), Luxembourg (M = 

6.3, SD = 3.2) and Finland (M = 6.1, SD =2.9). 

Countries with a low score were predominantly 

situated in Southeast Europe, with the lowest found in 

Kosovo (M = 1.5, SD =1.7), followed by Cyprus (M = 

1.9, SD = 2.0) and Malta (M = 2.4, SD = 2.6). In most of 

these countries, more than half of the respondents 

indicated that euthanasia was “never justified”. 

Compared with the results from the previous EVS 

wave (2000), acceptance of euthanasia has markedly 

increased in most Western European countries (eg 

27% increase in Spain), except in Austria, Germany, 

and the Netherlands where acceptance remained 

stable. In most Eastern European countries, however, 

a decrease was found (eg 29% decrease in Ukraine). 

Conclusion: Acceptance of euthanasia tends to be 

low to moderate in a large part of Europe. A clearly 

high acceptance is found in only a small cluster of 

Western-European countries such as the 3 countries 

that have legalized euthanasia (ie the Netherlands, 

Belgium and Luxembourg), Denmark, France, Finland 

and Spain. In the latter countries an increasing 

societal pressure to legalize euthanasia may be 

expected. 


End of Life Care I 



Existential-developmental Issues across the 

Life-span in Cancer & End of Life Care 

Poppito S.R. 1 

1 City of Hope National Medical Center, Department 

of Supportive Care Medicine, Duarte, CA, United 

States 

Purpose: End of Life literature examining 

terminally-ill patients’ desire for hastened death all 

point to existential ruptures or losses in Lifemeaning/purpose, 

autonomy/control, and overall 

sense of dignity/integrity at the end of life. By tracking 

the existential-developmental crisis points that occur 

across the life-span, palliative care practitioners have a 

rich opportunity to unearth purposeful ways of 

reconciling past and present crisis points through the 

life-review and life-completion process. 

Method: A Clinical Psycho-Oncologist, with 

expertise in Existential Psychology and Palliative 

Care, will offer an overview of existential issues from a 

developmental perspective across the life span in 

cancer care. Therapeutic case vignettes from Meaning- 

Centered and Dignity-Conserving interventions with 

terminally ill cancer patients will be examined to 

highlight existential-developmental themes across 

the adult life span. Terminally ill patients 

experiencing existential distress, such as unremitting 

angst or profound guilt and despair, will be presented 

to show how EoL practitioners may track existentialdevelopmental 

issues across the life-span and help 

dying patients reconcile with life in the face of death. 

Findings: Existential-developmental dimensions of 

terminally-ill cancer patients are delineated across 

domains of: 

1. Chronological Age, 

2. Developmental Milestones, 

3. Life Events/Crisis Points (past & present), and 

4. Cancer Events/Crisis Points (past & present). 

Philosophical underpinnings of ‘existential suffering’ 

are outlined as an umbrella concept encompassing 

the myriad ways individuals experience existential 

angst, despair, isolation, and guilt across the life-span. 

Conclusions: Tracking existential-developmental 

issues across the life-span allows dying patients to 

revisit positive and negative moments in life; giving 

patients the opportunity to re-script and re-store 

certain moments that help bring meaningful closure 

to life before death. 



Patterns of Decision-making towards the End 

of Life in the Intensive Care Setting - A 

Qualitative Study 

Rumble C. 1 , Shipman C. 1 , Koffman J. 1 , Morgan M. 2 , 

Hopkins P. 3 , Noble J. 3 , Bernal W. 3 , Leonard S. 3 , Dampier 

O. 3 , Prentice W. 3 , Burman R. 3 , Higginson I.J. 1 



Kingdom, 2 King’s College London, London, United 

Kingdom, 3 King’s College Hospital, London, United 


Aim: To identify patterns in the timing, involvement 

and nature of decisions made in intensive care units 

(ICUs) towards the end of life. 

Methods: Ethnographic approach in 3 ICUs in an 

inner city hospital that comprised 

(1) semi-structured interviews with relatives of a 

purposive sample of ICU patients for whom end of life 

discussions were taking place; 

(2) direct observations of care; 

(3) assessment of medical records. 

Data were analysed through thematic content 

analysis and the ‘framework’ approach. 

Results: 24 relatives were interviewed (ages 28-80; 

variation in ethnicity and religious affiliation) 

representing 20 patients with differing diagnoses 

(ages 19-87). 8 areas of decision-making were 

identified concerning: 

(1) resuscitation status 

(2) system support 

(3) medications / fluids 

(4) interventions / monitoring 

(5) specialty involvement 

(6) aims of care 

(7) place of care 

(8) care needs. 

A common factor influencing involvement was 

patient capacity. Relatives’ preferences for 

involvement varied, but most wanted information 

about the process with no wish for greater input. 

Some types of decision were more likely to be 

influenced by relatives (e.g. place of care and some 

interventions e.g. tracheostomy) whilst others were 

more often clinician directed (e.g. resuscitation 

status). 

4 broad patterns relating to the aims of decisions 

made were revealed: 

(A) curative aim throughout 

(B) initially for active management then a shift to 

comfort care 

(C) active management decisions interspersed with 

comfort measures 

(D) comfort care throughout. All occurrences of 

differing preferences or opinions were in group C. 

Conclusions: The findings from this study identify 

that decision-making towards the end of life in ICU is 

complex and multifactorial. By understanding these 

complexities we will be better able to improve end of 


life care in this setting and enhance the potential of 

reaching agreement between all parties. 

Funding: National Institute for Health Research 



Dying Is a Transition - Between Total Pain and 

Total Serenity 

Renz M. 1 , Schuett M. 1 , Bueche D. 2 , Cerny T. 1 , Strasser F. 3 

1 Cantonal Hospital St.Gallen, Oncology, St.Gallen, 

Switzerland, 2 Cantonal Hospital St.Gallen, Oncology 

and Palliative Center, St.Gallen, Switzerland, 


Medicine, St.Gallen, Switzerland 

Background: Knowledge is scarce about dying 

patients´ inner experiences, their mode of perception, 

state of consciousness and reasons for anxiety or total 

pain. A shift in perception might explain the dying 

patient´s experiences and that dying is a special form 

of boundary experience comparable to near-death, 

intrauterine and spiritual experiences and sometimes 

expressed in the language of C.G.Jung’s archetypes. 

Aim: To explore whether phases of transition and 

associated factors can be identified in the dying process. 

Methods: Patients were referred in an inpatient pc 

unit for psychooncological care. 

Data collection applied participant observation, the 

investigator utilized 

Jungian depth psychology (e.g., symbols, apocalyptic 

images in myth and religion, dream interpretation), 

trauma and music therapy and its effects both in 

boundary situations of transition (verbal-nonverbal, 

time-timelessness, individual-archetypal), and in 

psychopathology, and acknowledged spiritual 

experiences. 

Data analysis used Interpretative Phenomenological 

Analysis of therapist´s reports, performed by two 

researchers applying constant comparison. Emerging 

themes from the pilot phase (n=80) entered the full 

study (n=600). 

Results: Our data (n=680; 21-86y, 351 F / 329 M) 

suggest that dying is a transition that involves a 

transformation of perception in 3 phases: pretransition 

(ego-centred perception), transition, posttransition 

(ego-distant perception, serenity, spiritual 

opening). 51% of pts expressed a state of serenity, 

25% confirmed the fact of transition. Anxiety, 

struggle and total pain seem to happen only in the 

first 2 stages. 

Conclusions: The study suggests that dying is a 

transition process, requiring a “whole” care beyond 

needs and symptoms, to approach anxiety, struggle, 

total pain, serenity, or the difficulty of letting go. 

Patients, family members and professional carers may 

understand dying both as physical, psychological, 

and spiritual (teleological) process. 



The Provision of Culturally Sensitive 

Palliative and End of Life Care in New 

Zealand: The Views of Health Care 

Professionals 

Bellamy G. 1 , Gott M. 1 , Schofield Z. 1 

1 University of Auckland, School of Nursing, 

Auckland, New Zealand 

Research aims: Providing appropriate palliative and 

end of life care for diverse cultural groups requires 

health care professionals to be sensitive to a variety of 

different and sometimes conflicting end of life care 

needs. This paper explores their experiences of 

working with older people regarding the barriers to, 

and facilitators of, the provision of tailored, culturally 

sensitive end of life care across a variety of care 


Study design and methods: A qualitative study 

design was adopted. Eighty health care professionals 

regularly involved in caring for older people took part 

in ten focus groups and two joint interviews. 

Participants were recruited from primary (n=12), 

secondary (n=38) and residential care (n=30) 

organisations in Auckland, New Zealand. Discussions 

were recorded and transcribed verbatim and analysed 

using the principles of thematic analysis. 

Results: Analysis identified a number of issues: 

The tensions for staff involved in balancing the end of 

life care wishes of one individual against the needs of 

others in care settings 

The physical constraints of the environment in limiting 

some culturally specific end of life care preferences for 

the individual and their family members 

The difficulties experienced by health care staff in 

relinquishing and renegotiating their caring roles to 

family members/whanau (Maori term for family) 

A need to have an awareness of how different cultural 

groups view death and dying to enable health care 

staff to provide culturally appropriate end of life care 

Conclusion: Best practice requires an understanding 

of different social and cultural aspects of life and 

death to enable health care professionals to best meet 

the needs of their patients and families. Planning and 

preparation can ensure that health care professionals 

have an understanding of, and can meet different 

cultural expectations for the provision of good end of 

life care. 



Pathway for Improving the Care of the Dying 

(PICD) in a Tertiary Referral Hospital - 

Changing the Culture in the Desert of the 

Death Deniers 

O’Connor G. 1 , Mooney C. 1 , Palliative Care Consult 

Service, Southern Health 

1 Southern Health, Supportive and Palliative Care, 

Consult Service, Clayton, Australia 

With advances in medical science dramatically 

increasing treatment options there is the risk of seeing 

death as a failure of medical management, rather than 

the inevitable outcome of incurable disease. Hence 

Palliative Care teams in general hospitals often 

operate within a death-denying environment 

reflective of the attitude of some Health Care 

providers and of the broader community. 

With 65% of Australians dying in acute hospitals the 

Supportive and Palliative Care Unit (SPCU) consult 

service is only involved with one-third of these 

patients thus the SPCU determined to import the 

principles of palliative care to improve the care of 

patients dying in general hospital wards. 

A multi-disciplinary committee developed PICD by 

adapting the Liverpool Care Pathway. 

PICD consists of a number of prompts, medical and 

nursing care plans and medication algorithms for 

common symptoms in the terminal phase as well as 

written material to help families and carers through 

the experience of a loved ones’ death. A SPCU nurse 

oversaw the pilot project for 4 months with the 

following summarised audit results. 

Pre PICD = A, Pilot Oct/Nov 07 = B 

Documentation patient is dying A 87%, B 

100% 

Discussion with family, goal is comfort care A 

87%, B 100% 

Pastoral care offered A 0%, B 70% 

Current medications assessed A 73%, B 100% 

Morphine A 93%, B 100% 

Midazolam A 67%, B 90% 

Hyoscine A 27%, B 100% 

Metoclopromide A 47%, B 100% 

Review medical management A 80%, B 100% 

Revised nursing care management A 73%, B 

95% 

Social Worker involved A 40%, B 75% 

We will discuss the pilot project in the 96 bed general 

medical wards and how we addressed the subsequent 

roll out of PICD across the network. Three years later 

PICD is in most of our wards and in our local country 

hospitals which have very limited specialist Palliative 

Care input. 

Keywords: Palliative Care, Death and Dying, 

Pathway for Improving the Care of the Dying, PICD, 

End of Life Care pathways, LCP, The Palliative 

Approach 



Increased Sense of Peace and Similar Levels of 

Pain Control and Family Distress when Dying 

at Home vs. in Hospital: Results from a 

Mortality Followback Study in Cancer 

Gomes B. 1 , Calanzani N. 1 , Hall S. 1 , Koffman J. 1 , McCrone 

P. 2 , Higginson I.J. 1 


Rehabilitation, London, United Kingdom, 2 King’s 

College London, Centre for the Economics of Mental 

Health/Section of Community Mental Health, 


Aim: To examine variations in the palliative 

outcomes associated with dying from cancer at home 

or in an institution. 

Design: Mortality followback survey. 



Setting: Four areas in London (UK), one year period 

(09/10). 

Participants: 593 bereaved relatives of cancer 

patients identified from death registrations (4-10 

mths after death). Sample stratified by death at home 

(n=188), hospital (176), hospice (194), nursing home 

(35). 

Measurements: Postal questionnaire with measures 

of palliative outcomes (POS and POS-Peace item) 

related to the patient last week of life. 

Results: Patients who died at home were more often 

at peace in the last week of life than those in hospital. 

Median in POS-Peace item [scores range 0-5, higher 

scores meaning less frequent sense of peace] was 1 

(most time) at home vs. 3 (sometimes) in hospital (p< 

.0001). 26% of those at home felt peaceful all the time 

in the last week of life (as opposed to 13% in hospital, 

p=.002). In addition, patients who died at home 

experienced lower levels of pain in the last week of life 

than those in hospital (median slight vs. moderate) 

but the difference was not significant. The last week 

was pain-free for 38% of those at home (vs. 31% in 

hospital, difference not significant). Levels of family 

distress were not significantly different (median score 

of 3 - most of the time). There were no differences in 

sense of peace, pain and family distress levels between 

home and hospice death or nursing home death 

(Mann-Whitney tests with 95% confidence). 

Discussion: Cancer patients who died at home 

experienced an increased sense of peace in the last 

week of life than those in hospital and similar to those 

in hospices and nursing homes. Pain control and 

family distress levels in the last week of life were 

similar across all settings. Despite this, only a minority 

at home achieved a peaceful and pain-free death. It is 

important to provide this for more, in London and 

other regions of Europe, in response to preferences. 

Free Communication - Life Span 



Results from a Pain Management 

Intervention in a Veterans’ Long Term Care 

Facility 

Rolls E. 1 , Johnston G.M. 2,3 

1 Capital Health, Camp Hill Veterans’ Services, Halifax, 

NS, Canada, 2 Dalhousie University, School of Health 

Administration, Halifax, NS, Canada, 3 Cancer Care 

Nova Scotia, Surveillance and Epidemiology Unit, 

Halifax, NS, Canada 

Aim: To report the impact of a pain management 

intervention in a 175 bed Veterans’ long term care 

facility. Intervention development and 

implementation was prompted by a low satisfaction 

(40%) pain management score in 2007, and an 

increase in Veterans with multiple complex chronic 

diseases. The average length of stay decreased from 22 

months in 2005 to 4 months in 2009. A palliative 

philosophy of care was needed. 

Methods: The pain management intervention was 

guided by Kotter’s collaborative change process to 

select and implement an assessment tool to be used 3 

times a day, expansion of the means for pain control, 

staff education on pain assessment and management, 

and audits of pain assessment and control 

documentation. All residents and staff were involved. 

Results: Veterans were an average of 88 years. Over 

85% have dementia or cognitive impairment. The 

Abbey scale was selected as the pain assessment tool 

since it was validated for persons with cognitive 

impairment and is relatively easy for care providers to 

incorporate into regular care. Non-pharmacological 

treatments for pain (acupuncture, massage therapy, 

music therapy, hot/cold packs, cervical collars, 

pressure reduction mattresses, physiotherapy, 

radiation) increased from 10% in March 2009 to 49% 

in August 2010. Regular orders of analgesics increased 

from 53% to 76%, and acetaminophen plain 

decreased from 93% to 49%. Other analgesics 

(acetaminophen CR, diclofenac drops, 

hydromorphone, morphine, pregabolin, codeine...) 

increased from 7% to 41%. In the fall 2009 annual 

survey, pain management satisfaction was 100%. 

Conclusions: Veteran and family satisfaction with 

pain management improved. There was greater 

diversity and use of pharmacological and nonpharmacological 

management. Pain was incorporated 

as the 5 th vital sign with pain assessment and 

documentation of both physical and spiritual pain, 

increased staff knowledge of pain, and development 

of a philosophy reflecting changing needs. 

Funding: CHSRF 

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When to Involve Hospital Palliative Care 

Team in the Care of Teenagers and Young 

Adults with Cancer - A Theoretical Analysis of 

Practice Experience 

Ayton J. 1 , Haig S. 1 , Duke S. 1,2 , Davis C.L. 1 , Cancer, 

Palliative and End of Life Care Research Gp 

1 Southampton University Hospital NHS Trust, 

Palliative Care, Southampton, United Kingdom, 

2 University of Southampton, Faculty of Health 

Sciences, Southampton, United Kingdom 

Background: There is published support for 

palliative care for teenagers and young adults (TYA) 

with cancer at the end of life but little discussion 

about the place of hospital palliative care (HPC) at 

other times of illness. 

Aims: To analyse the inter-relationship between TYA 

and HPC services to inform debate about the 

contribution and timing of palliative care for TYA 

with cancer. 

Method: Bourdieu’s theory of practice was used to 

analyse 6 cases from practice. Bourdieu describes 

practice as a structured social space in which 

relationships determine the capacity of a particular 

practice to achieve the scope intended. We analysed 

the timing and purpose of interactions by both teams 

and the impact of these on the process of care, case by 

case. 

Results: Whilst both teams have a patient care focus, 

their fields of practice differ temporally and socially. 

The TYA team’s practice is shaped by sequential 

interactions that supportively bridge pivotal 

moments in a young person’s illness. The HPC team’s 

practice is shaped by intermittent interactions, 

focused on symptom distress at any point in illness, 

and preferred place of death at the very end of life. 

These interactions can potentially be dislocated from 

the continuity provided by the TYA team.. However, 

when integrated the synergy created between teams 

provides both with access to practice that would 

otherwise be ‘out of bounds’ (TYA team to 

community palliative care services and HPT to people 

less than 18 years old). This develops the capacity of 

both teams to provide palliative care to TYA. 

Conclusion: In contrast to existing literature which 

places HPC at the end of life, our results demonstrate 

that synergistic working between TYA and HPC teams 

throughout illness increases the capacity to care well 

for TYA with cancer. This requires purposeful 

communication and understanding of each other’s 

practice, and a willingness to provide access to that 

which is traditionally considered to be outside the 

scope of the other. 



An Evidence Based Model of Palliative Care in 

Long Term Care 

Parker D. 1 , Hughes K. 1 , Jenkin P. 2 , Walker H. 3 , Greeves K. 4 , 

Tuckett A. 1 , Reymond E. 5 , Israel F. 5 , Glaetzer K. 2 

1 The University of Queensland, School of Nursing and 

Midwifery, Brisbane, Australia, 2 Southern Adelaide 

Palliative Services, Adelaide, Australia, 3 WA Cancer & 

Palliative Care Network, Perth, Australia, 4 QA Cancer 

and Palliative Care Network, Perth, Australia, 

5 Brisbane South Palliative Care Collaborative, 

Brisbane, Australia 

In Australia 7% of persons aged 65 and over live in a 

long term care (LTC). This study was a 2 year national 

project implementing an evidence based model of 

palliative care in LTC. The project was funded by the 

Australian Government Department of Health and 

Ageing under the EBPRAC program. The model of 

care included three key processes: 

1. Advance Care Planning 

2. Palliative Care Case Conferences 

3. End of Life Care pathway 

Nine LTC facilities around Australia participated and 

in each link nurses were trained to implement the 

model of care and act as champions of change within 

their LTC facility. Other staff received education on 

the model of care including monthly reviews with a 

specialist palliative care nurse. This paper reports on 

the resident outcome data. 

Data was collected on 83 residents who had died in 

the nine LTC 12 months prior to the model of care 

implementation. After education, a total of 73 

residents received the new model of care. Chart audits 

were completed on the last month of care for 

residents in both groups. There were significant 

improvements in documentation of end of life (EOL) 

wishes (55.4 vs 72.6%, c 2 = 4.94, p< 0.05), evidence 

that next of kin were involved in EOL discussions 

(71.1 vs 95.7%, c 2 = 15.85, p< 0.001), the use of 

palliative care case conferences (8.4 vs 94.5%, c 2 = 

115.21, P< 0.001) and an EOL care pathway (21.7 vs 

84.6%, c 2 = 37.65, p < 0.001). 

There was a significant improvements in pain 

assessment (41.6 v 70.3%, c2=11.66, p=0.001), 

effectiveness of non-pharmacological treatments for 

pain (23.4 v 62.5%, c2=22.09, p< 0.001), effective use 

of regular analgesia (56.7 v 64.5%, c2=0.82, p=0.37) 

and prn analgesia (62.1 v 77.6%, c2=3.47, p=0.06). 

Significant increases were also found for assessment of 

dysponea (2.4 v 44.4%, c2=18.58, p< 0.001) and the 

use of non-pharmacological strategies for dysponea 

(31.7 v 57.1%, c2=4.42, p< 0.05). An evidence based 

model of palliative care can improve the care provided 

for residents in LTC. 



Intensive Care Outreach Network (ICON) and 

End-of-Life Decisions in a Children’s Hospital 

Craig F. 1 , Schumacher K. 2 , Brierley J. 2 , Midson R. 3 

1 Great Ormond Street Hospital for Children NHS 

Trust, Palliative Care, London, United Kingdom, 

2 Great Ormond Street Hospital for Children NHS 

Trust, PICU, London, United Kingdom, 3 Great 

Ormond Street Hospital for Children NHS Trust, End 

of Life Care, London, United Kingdom 

Introduction: Children with predictably poor 

outcomes are often admitted to the Intensive Care 

Unit (PICU) even where death is a likely outcome. In 

many situations, a predictable but acute deterioration 

occurs before appropriate discussions have taken 

place with the family and in most situations there has 

been no involvement of palliative care services. Many 

bereaved parents, when later asked, feel they were not 

given options before their child deteriorated, and may 

not have opted for PICU if they had been provided 

with accurate information and alternative options of 


An intensive care outreach program was initiated, led 

by the ICU team and supported by the palliative care 

service. One of the aims of ICON was to identify 

children with predictably poor outcomes who may 

benefit from advance care planning and palliative 

care support. 

Aim: To identify the number of advance care 

planning discussions initiated by the ICON team. 

Methods: Retrospective review of the ICON database 

over a 12 month period to identify where advance 

care planning discussions had been initiated. 

Results: There were 18 referrals to ICON that led to 

advance care planning. 7 families agreed that ICU 

admission was not appropriate and 6 of these children 

died. Two families pursued ICU admission and both 

children died. A further 9 children were discharged to 

local services for longer-term care planning. 

Conclusion: ICON involvement occurs earlier than 

traditional ICU referral, enabling proactive discussion 

of the role and potential benefit of ICU management. 

This facilitates earlier consideration of likely outcome, 

the opportunity for families to consider care options 

and access to palliative care support. 



Paediatric Palliative Home Care in Lower 

Saxony, Germany by Paediatricians, Hospice 

Services and Nursing Teams 

Kremeike K. 1 , Eulitz N. 2 , Reinhardt D. 1,3 

1 Betreuungsnetz für Schwerkranke Kinder, Hannover, 

Germany, 2 University Göttingen, Palliative Care, 

Göttingen, Germany, 3 Hannover Medical School, 

Pediatric Hematology and Oncology, Hannover, 

Germany 

Background: Paedriatic palliative care requires a 

broad multidisciplinary approach. Concerning the 

home care setting in Germany, paediatricians, 

(paediatric) 

nursing services and (paediatric) hospice services are 

important providers in 

paediatric palliative care. 

Method: The objective of the study is to evaluate the 

working conditions and needs of paediatric palliative 

service providers in Lower Saxony, Germany. A survey 

was carried out among practicing paediatricians 

(n=157/ return rate n=141; 89.8%), paediatric nursing 

services for out-patients (n=22/ return rate n=14; 64%) 

and hospice services for out-patients (n= 322 / return 

rate n=134; 41.6.%). 

Results: The 141paediatricians treated 800 children 

suffering from life-limiting diseases (LLD) in 2008. 

This corresponds to the estimation of ~2500 children 

with LLD in 

Lower-Saxony. The nursing services treated 168 

children and the hospice 

services took care of 84 children in 2008. Identifying 

the most relevant 

problems, the professional groups showed significant 

differences (exception: “lack of time”). Whereas the 

physicians identified the lack of time (score 3.72), lack 

of professional exchange (3.46), high responsibility 

(3.11) and lack of special knowledge (3.09) as the most 

incriminatory problems, the nursing services 

described the additional expenses (4.08), lack of time 

(3.5), emotional stress (3.21) and the uncertain 

prognosis (2.91) as the most relevant questions 

(physician vs. others: all p< 0.03). In general a 

specialized team including 24 hour on call duty and 

the intensification of educational programs was 

emphasized. 

Conclusions: The assistance of service providers by 

paediatric palliative care specialists is essential to 

provide appropriate home care for children suffering 

from life-limiting diseases in Lower Saxony. The 

implementation of a paediatric palliative care team in 

April 2010 can meet this demand. 



Development of a New Service Model to 

Deliver End of Life Care to Elderly Patients in 

Nursing Homes 

St George M. 1 , Bunker E. 2 , Horak E. 2 , Saunders Y. 2 

1 Hillingdon Community Health, Specialist Palliative 

Care Community Team, Yiewsley, United Kingdom, 

2 The Hillingdon Hospitals Trust, Palliative Care, 

Uxbridge, United Kingdom 

Aims: The elderly population is increasing. Many will 

spend their last few years in a care home. Residents 

often have complex health care needs and cognitive 

impairment. Our aim was to develop a new and 

sustainable service model to deliver Gold Standards 

Framework endorsed, individualised, end of life care 

in all nursing homes in the borough. 

Design, methods and statistics: Each Palliative 

Clinical Nurse Specialist (CNS) was assigned 2 nursing 

homes (NH) and set up a complex intervention as 

follows: 

Weekly patient review and educational meetings with 

NH staff 

Identification of patients in the last year of life, 

including those with non-malignant diagnoses, by 

Care Home Staff, General Practitioners and Care of 

the Elderly teams, using a range of tools 

For hospital inpatients plans were completed prior to 

discharge 

Development of an individualised Advance Care Plan 

(ACP) for each patient, stating preferences with 

respect to place of care, symptom control and 

avoidance of unnecessary treatment, including acute 

admissions 

ACP sent to relevant health care providers 

Care in the last days of life delivered by NH staff with 

CNS support 

The number of patients identified, number of deaths 

and place of death were recorded before and after the 

introduction of the project. 

Results: 

Pre-project Post-project 

2007/8 2008/9 

Total Deaths 206 204 

Patients with ACP 25% 100% 

Deaths in NH 58% 96% 

Deaths in hospital 41% 4% 

[All NHs in the borough took part] 

Conclusion: The key to the success of this project 

was: the development of a competent and confident 

workforce in each NH, a good working relationship 

with staff, cross boundary working, recording advance 

care plans and sharing them with relevant providers, 

including out of hours services. Sustainability of this 

model of care is ensured by incorporating delivery of 

care in nursing homes as part of our CNS’s normal 

workload. 


Free Communication – Bereavement 



RCT of Family Therapy during Palliative Care 

and Bereavement 

Kissane D.W. 1 , Zaider T.I. 1 , Li Y. 1 , Del Gaudio F. 1 , 

Simpronio J. 1 , Bell R. 1 

1 Memorial Sloan-Kettering Cancer Center, Psychiatry 

& Behavioral Sciences, New York, NY, United States 

Aims: Family therapy delivered during palliative care 

and bereavement to families át risk´ of morbid 

bereavement outcomes, based on FRI screening 

profiles at study entry, has the potential to prevent 

depressive disorders and complicated grief. Dose of 

family therapy has needed study to better predict how 

much therapy to deliver. 

Methods: Eligible families were randomized to 

standard care or 6 or 10 sessions of a manualized 

family therapy. Fidelity of intervention delivery was 

appraised. Family members were followed through 6 

& 13 months of bereavement. Primary outcomes were 

scores on the Beck Depression Inventory & 

Complicated Grief Inventory. 

Results: Currently 145 families (465 individuals) are 

enrolled. Session by session monitoring reveals a 

significant improvement in family communication 

over time. Fidelity of therapy items include 98% 

review of the illness, 88% identification of 

transgenerational patterns of relating, 80% 

comprehensive coverage of family communication. 

Complicated grief occurred in 28% of standard care 

and 11% of therapy arm individuals at 6 months of 

bereavement. BDI depression scores reduced 

significantly in the therapy arms and was unchanged 

in standard care. 

Conclusion: Both clinical depression and 

complicated grief can be prevented by family therapy 

offered to át risk´ families met in palliative care, with 

continuity of the intervention into bereavement. This 

model of family intervention enables hospice 

programs to increase their orientation towards 

´family-centered care´. 



“Elation” and “Grief”: Stories of Personal 

Growth Amidst Stress from Parents Caring for 

a Child with a Life-limiting Illness 

Cadell S. 1 , Wilson K. 2 , Siden H. 3 , Straatman L. 4 , Davies 

B. 5 , Steele R. 6 , Liben S. 7 , Hemsworth D. 8 

1 Wilfrid Laurier University, Faculty of Social Work, 

Kitchener, ON, Canada, 2 Wilfrid Laurier University, 

Faculty of Social Work, Kichener, ON, Canada, 

3 University of British Columbia, Vancouver, BC, 

Canada, 4 Canuck Place Children’s Hospice, 

Vancouver, BC, Canada, 5 University of Victoria, 

Victoria, BC, Canada, 6 York University, Toronto, ON, 

Canada, 7 Montreal Children’s Hospital, Montreal, 

QC, Canada, 8 Nipissing University, North Bay, ON, 

Canada 

Background: This research addresses personal 

growth in parents who care for a child with a lifelimiting 

illness. Personal growth is considered to be 

the positive changes people experience as a result of 

adverse circumstances. There is a paucity of research 

to date on positive outcomes in caregiving, especially 

concerning parents. This research is unusual in that it 

examines people experiencing ongoing stressful 

circumstances rather than a single life event. 

Objective: To identify the factors that allow parent 

caregivers to survive and even grow in the face of the 

stressful circumstances of caring for a child with a lifelimiting 

illness. 

Methods: Data was collected by survey and in-depth 

interviews of parent caregivers. The survey included 

measures of stress, burden, spirituality, meaning in 

caregiving, posttraumatic growth, optimism, and selfesteem. 

Participants were recruited through children’s 

hospices and hospitals throughout Canada and the 

United States. Semi-structured, face to face interviews 

were conducted with a sub-sample of parents (N=23) 

from the quantitative phase of the study (N=273). 

Interviews lasted about 2 hours and explored 

experiences of stress and personal growth. After being 

transcribed the data was coded using the constant 

comparative method. 

Results: Results will be presented where the 

qualitative data enhances or contradicts the 

quantitative results of this study. Examples of high 

and low growth will be discussed as measured with 

the Posttraumatic Growth Inventory. 

Conclusions: This research enhances our 

understanding of personal growth in parents who are 

caring for a child with a life-limiting illness, which in 

turn enhances the practice of pediatric palliative care. 

The data illustrates how positive and negative 

experiences and emotions co-occur, not replace one 

another. The next phase of this project is to study 

personal growth over time in both parents who are 

currently caring for their children and those who are 

bereaved. 



Parents’ Journey through Death of their Child 

- Rites of Passage? 

Price J. 1 , Jordan J. 1 , Prior L. 2 , Parkes J. 1 

1 Queen’s University Belfast, Nursing and Midwifery, 

Belfast, United Kingdom, 2 Queen’s University Belfast, 

School of Sociology, Social Policy and Social Work, 

Belfast, United Kingdom 

Research aims: As numbers of children requiring 

palliative care increase, a more substantive research 

base to underpin care to include children with nonmalignant 

conditions as well as children with cancer 

is required. Aimed at redressing gaps in knowledge 

this qualitative study examined bereaved parents’ 

experiences of providing palliative care to their child. 

Study design and methods: An interpretative 

qualitative approach was used and data collected 

through in-depth interviews with mothers (n=16) and 

fathers (n=9). Through the use of Van Gennep’s ‘rites 

of passage’ framework and the application of 

narrative analysis to further unpack the identified 

themes and their inter-relationships, an explanatory 

framework of how parents’ respond to their child’s 

illness, including how they seek to care for their dying 

child was developed. 

Results: The analytically defined journey took 

parents through a series of transitions into a new 

social stage, that of bereaved parent. From the first 

sign of their child’s health deficit onwards parents 

repeatedly strove to provide, protect, preserve and 

pilot their way through emotional chaos and 

uncertainty. Throughout, the child was central, their 

care, their needs, their wishes and after death their 

memory. In adjusting to ever-changing circumstances 

parents were continually ‘doing’ for their child and 

family. Further such ‘doing’ appeared to help parents 

accommodate their emotional responses and better 

cope with the stress they faced. 

Conclusions: Journeying through the loss of a child 

is a major life changing experience for a parent and 

the enormous impact on the whole family cannot be 

understated. Health and social care professionals are 

in a unique position to journey with families, 

supporting them through help-giving, advice-giving 

and esteem enhancing activities as they adapt their 

life in response to their child’s illness and eventual 

death. This study gives new insights as to how such 

professional support can be provided. 



After the Death of a Newborn Child: A Study 

of Parental Grieving and Involvement in a 

Decision on Restriction of Intensive Care (RIC) 

Wermuth I. 1 , Schulze A. 1 

1 Center for Perinatal Medicine Grosshadern, Dr. von 

Hauner Children`s Hospital, Ludwig-Maximilian- 

University, Division of Neonatology, Munich, 

Germany 

Research aims: To obtain empiric data on parents’ 

individual experiences of death of their newborn 

infant, to identify variables influencing the grief 

reaction and to get insight in parents´ view on an 

involvement in a decision on RIC. 

Study design and methods: Parents of all infants 

who died during a 5-year-period were asked to fill out 

a standardized questionnaire and/or to participate in a 

semi-structured interview. Interviews were recorded 

and transcribed. Questionnaire comprised 242 

questions. Perinatal Grief Scale (PGS) was used as an 

outcome measure for grief intensity. Non-parametric 

statistical tests. 

Results: 50 parents (31 f, 19 m) participated. The 

interviews lasted 2.6 hrs on average. 

Grief intensity was higher (p< 0.05) for mothers vs. 

fathers. Furthermore grief reaction between mothers 

and fathers differed significantly with respect to the 



time of active grief and the perceived degree of 

negative consequences on their social relations 

(p=0.03). 

Grief intensity was not higher if there was parental 

involvement in a decision on RIC. Parents involved in 

a decision to withdraw life-sustaining therapy said 

that (i) their involvement had been the right way in 

this situation (95%) (ii) they did not regret their 

participation in the decision (92%) (iii) they had no 

feelings of guilt (85%). However 45% of these parents 

felt uncomfortable in the situation and overwhelmed 

by the decision. 

No parent regretted the decision to be present during 

their child’s death. All parents who had physical 

contact with their dying baby described this as a 

positive experience. The majority of parents who had 

no physical contact later expressed regret for this 

missed opportunity. 

Conclusion: A study of grieving is feasible and 

possibly even appreciated by parents. Grief reactions 

vary considerably. A counselling process informing 

parents about these individual differences might help 

them to anticipate potential problems and to 

recognize their need for professional help. 



A Community Based Approach to Supporting 

Bereaved Children, Young People and their 

Families - A Ten Year Retrospective 

Monroe B. 1 

1 St Christopher’s Hospice, London, United Kingdom 

Background: Many palliative care services offer 

support to the bereaved children of patients under 

their care. Limited resources and unmet need suggest 

that this support should be extended to any child 

bereaved through death in the local communities 

surrounding the service. Children’s bereavement 

services based on a public health model using a 

quality of life rationale can reach disadvantaged 

groups and seek to prevent or mitigate the potential 

negative consequences of bereavement and promote 

stress-related growth. 

Aim: This paper will describe a children’s 

bereavement service based at a London hospice which 

delivers a multi-system approach, with a wide range of 

coordinated interventions focussed on promoting the 

confidence and competence: of the individual child; 

the family; communities; other professional agencies; 

and national policy development. It is argued that 

such an approach does more to maximise possible 

benefits than a sole focus on individual outcomes 

defined only in terms of reduction in problem 

behaviours and symptoms. 

Methods: Presentation of an analysis of ten years’ 

activity data across all service offerings including 

demographics and cost and evidence from recent 

stakeholder and user surveys. 

Indicative results: Two thirds of children 

supported come from non-white British families. 65% 

have experienced the sudden and often violent death 

of someone close. 80% live in areas below halfway 

mark in Government index of multiple deprivation. 

75% of parents and carers able to report specific ways 

in which things have got better for their child. 

Conclusion: Small projects with very limited 

resources can have a significant cost effective impact if 

based on a collaborative partnership with families and 

a focus on community integration and capacity 

building. 



Supportive Group Psychotherapy for 

Relatives of Palliative Care Patients 

Fegg M. 1 , Brandstätter M. 1 , Kögler M. 1 , Hauke G. 1 , 

Rechenberg-Winter P. 1 , Borasio G.D. 2 

1 Interdisciplinary Center for Palliative Medicine (IZP), 

Munich University Hospital, Munich, Germany, 

2 University of Lausanne, Centre Hospitalier 

Universitare Vaudois, Lausanne, Switzerland 

Background: Many studies found that relatives of 

palliative care patients suffer from intense 

psychological distress. Psychotherapeutic 

interventions, however, have mainly been developed 

for cancer patients and only few programs exist for 

relatives. Based on newer developments in 

behavioural therapy (“third wave”), we have 

developed a group intervention consisting of six 

sessions (approx. 8 participants). The standardized 

program includes mindfulness meditation, meaning- 

61 

Free 

communication 

sessions

Free 

communication 

sessions 


centered interventions, acceptance-enhancing 

approaches and value-based commitments. 

Objectives: Are there positive effects on quality of 

life and psychological symptoms in the intervention 

group compared to untreated controls? 

Methods: The applicability and effectiveness of the 

group intervention were evaluated in a randomized 

controlled trial. The sessions were led by a group of 

trained psychotherapists and video-taped for 

treatment integrity. The participants were relatives of 

inpatients of two palliative care units and a radiooncology 

department. Self-report questionnaires 

included psychological symptoms (Brief Symptom 

Inventory, BSI) and a numeric rating scale on quality 

of life (QoL_NRS, 0-10). They were administered at 

baseline, pre-/post-treatment, and at a 3-month 

follow-up. 

Results: 123 relatives (51% intervention, 71% 

female, age 54.7±13.2 years, 60% partners) 

participated in the study. Preliminary results show a 

positive effect (pre/post) of the intervention on QoL 

(eta 2 =.09, p< .001), and a small, not significant effect 

on psychological distress (BSI anxiety: eta 2 =.03). 

Conclusion: Preliminary interpretation of effect 

sizes shows a positive effect of the group intervention 

on quality of life. Detailed analyses of the data will be 

presented at the conference. 

This study was supported by the Deutsche Krebshilfe 

e.V. 

Free Communication – Policy 



Can Donors Support the Generation of 

Evidence to Enhance the Provision and Access 

to Palliative Care in Low and Middle Income 

Countries? An Example of a Clinical and 

Public Health Research Strategy 

Dix O. 1 

1 The Diana, Princess of Wales Memorial Fund, Head 

of the Palliative Care Initiative, London, United 


Aims: The provision of palliative care in low and 

middle income countries is hampered by the lack of 

academic credibility and career pathways and 

evidence of need and effectiveness, with a resulting 

policy void. The role of donor agencies has not been 

fully examined and there is a lack of strategic support 

to address these fundamental barriers. Donors are 

generally not experts in the research field and are 

wary of the complexity of the process. As part of its 

overall policy scale up palliative care, this foundation 

has developed and implemented a strategic approach 

that integrates education and research into its strategy 

for palliative care advocacy. 

Design: Our foundation considered the greatest 

needs in palliative care research and how research 

could stimulate advocacy. It identified experts in the 

field, developed a strategy for research-led advocacy 

and designed a number of responsive and open calls 

for grants that met our strategic objectives. 

Results: We have given 11 research grants for 

amounts between £3,000 and £300,000 for topics 

ranging from barriers to disclosing life-threatening 

illnesses to children to the impact of introducing 

palliative care into outpatient ART clinics. All research 

is intended to provide evidence for advocacy to 

influence governments and other donors. All grants 

build research capacity in country, through North/ 

South partnerships in research and support for the 

development of research units at two leading 

universities in sub-Saharan Africa. Individual 

researchers are supported with bursaries, specific 

training, and with submitting articles and abstracts. 

Conclusion: We would encourage other donors to 

have a research programme. Ours has shown it is 

possible to do it well with expert help and to have 

impact on: career pathways in palliative care and 

institutional development as well as use the evidence 

base for lobbying and advocacy. 



Policy and Palliative Care in Africa - What 

Does the Landscape Look Like? 

Mwangi-Powell F.N. 1 , Baguma A.C. 2 , Mienies K.A. 3 

1 African Palliative Care Association, Managment and 

Policy, Kampala, Uganda, 2 African Palliative Care 

Association, Grants, Kampala, Uganda, 3 African 

Palliative Care Association, Programmes, Cape Town, 

South Africa 

Background: The African Palliative Care 

Association (APCA), through a grant funded by the 

Open Society International Palliative Care Initiative 

and Open Society Institute South Africa, conducted a 

1-year project that reviewed national legislation, 

policy documentation and implementation 

guidelines across 10 southern African countries. The 

review assessed opportunities, gaps, and gender issues 

that can be addressed or strengthened to support 

palliative care at the national level. 

Method: 

Document review tool was developed based on 

evidence from rapid appraisals in Zambia and 

Zimbabwe and information from Uganda, Kenya and 

South Africa. 

Key policy documents, guidelines and frameworks 

from the project countries were reviewed 

A country report was developed highlighting the 

findings and recommendations. 

A roundtable meeting was held in each country with 

key stakeholders to discuss the findings, 

recommendations and to brainstorm ideas for a 

country advocacy agenda 

It is evident that one of the key challenges to effective 

palliative care development across Africa is the lack of 

its integration into existing national health policies 

and strategies, thereby denying access to the majority 

of those who require palliative care. Reviewing 

national legislation and policy documents in each 

country allowed APCA to hold key discussions and 

sensitise policy makers on palliative care and gender 

issues that need to be addressed and strengthened. 

Lessons learned: There is still a lack of knowledge 

around palliative care which needs to be addressed at a 

national level but there is a willingness and acceptance 

for further integration and recommendations to be 

given to enhance access to palliative care. 

Recommendation: This was a key project to 

highlight gaps and opportunities for palliative care at 

a national level. This needs to be replicated through 

other countries to ensure access to care for those who 

need it. 



Barriers to Palliative Care and Pain 

Management in Ukraine 

Lohman D. 1 , Tymoshevska V. 2 , Shapoval K. 2 , Kotenko G. 3 , 

Druchinina A. 4 , Buchenko A. 5 

1 Human Rights Watch, New York, NY, United States, 

2 International Renaissance Foundation, Kiyv, 

Ukraine, 3 Network of PLHA, Rivne, Ukraine, 4 Network 

of PLHA, Kiyv, Ukraine, 5 Institute of Legal Analysis, 

Charkov, Ukraine 

In light of anecdotal evidence suggesting poor 

availability of opioid analgesics and failure to adhere 

to WHO pain treatment guidelines in Ukraine, our 

study sought to determine what barriers exist to the 

provision of good pain management services for 

patients suffering from moderate to severe pain. 

Research consisted of two components. We 

conducted a literature review to understand the 

context within which doctors provide pain 

management to patients. We reviewed Ukraine’s drug 

regulations, health policies, med. school textbooks 

etc. And we conducted 30 semi-structured interviews 

with healthcare workers, administrators, patients and 

their relatives in three regions to understand how 

pain management is provided in practice. 

The literature review showed that Ukraine’s drug 

control regulations significantly circumscribe the 

ability of healthcare providers to offer good pain 

management services as oral morphine is not 

registered in the country or included in the 

government’s essential medicines lists, medical 

textbooks do not teach the WHO treatment 

guidelines for cancer pain, and no treatment 

protocols for pain exist. Interviews with healthcare 

workers and patients suggest that opioid analgesics 

are not available at all in many rural areas; pain 

treatment is provided in a way that fundamentally 

deviates from WHO treatment guidelines. In 

particular, morphine is routinely given by 

intramuscular injection; dosages are often not titrated 

to the needs of the individual patient; and many 

patients are started late on morphine. 

Conclusion: The government needs to take urgent 

steps to ensure that patients in Ukraine have access to 

opioids and that healthcare workers can provide pain 

management consistent with WHO guidelines. It 

needs to establish an appropriate balance between 

prevention misuse of medications and adequate their 

availability for legitimate purposes, ensure availability 

of oral opioids, introduce instruction on modern pain 

management practices in medical schools. 



‘There’s a Specialism as Well which Makes 

Things Difficult Sometimes’: Challenges in 

Negotiating ‘Generalist’ and ‘Specialist’ 

Palliative Care Provision in England and New 

Zealand 

Gott M. 1 , Ingleton C. 2 , Seymour J. 3 , Bellamy G. 4 , Gardiner 

C. 2 

1 University of Auckland, Auckland, New Zealand, 

2 University of Sheffield, Sheffield, United Kingdom, 

3 University of Nottingham, School of Nursing, 

Nottingham, United Kingdom, 4 University of 

Auckland, School of Nursing, Auckland, United 


Background: England and New Zealand, in 

common with most developed countries, are facing 

significant challenges in ensuring adequate palliative 

care provision for ageing populations who are 

increasingly dying from conditions other than cancer. 

It is within this context that palliative care policy in 

both countries acknowledges the central role of non 

specialist-palliative care providers in palliative care 

provision. However, little is known about the nature 

of, and barriers to, ‘generalist’ palliative care 

provision. 

Aims: To explore understandings of, and the 

relationship between, ‘generalist’ and ‘specialist’ 

palliative care provision in England and New Zealand. 

Methods: Qualitative data were gathered via focus 

groups and individual interviews with 58 health 

professionals in England and 80 health professionals 

in New Zealand. Participants in both countries 

comprised ‘generalist’ and ‘specialist’ palliative care 

providers working within primary and secondary care 


Findings: Few differences between the two countries 

were identified. Only specialist palliative care 

providers used the term ‘generalist palliative care’ and 

‘generalists’ had difficulties in defining both 

‘palliative care’ and their specific role in this area. The 

view of palliative care provision as a valued 

component of the ‘generalist’ workload was 

challenged. For ‘generalists’ to assume a role in 

palliative care within acute hospital settings was seen 

as particularly difficult because of the curative focus of 

acute medical practice. Participants also identified 

that affording specialist status to palliative care may 

have inadvertently reduced generalists’ perceived 

responsibility for palliative care provision. 

Conclusion: Our findings indicate a need to further 

understand constraints upon generalist palliative care 

provision, including the unintended negative 

consequences of specialism. 

Funding: National Institute of Health Research (UK); 

University of Auckland (New Zealand). 



The International Visiting Scholars Program: 

Effectiveness of a 4-week Curriculum in 

Palliative Medicine 

Yang H.B. 1 , Moore S.Y. 1 , Lloyd L.S. 1 , Nelesen R.A. 1 , 

Whitmore S.M. 1 , Ferris F.D. 1 

1 The Institute for Palliative Medicine at San Diego 

Hospice, San Diego, CA, United States 

Background and aims: The International Visiting 

Scholars (IVS) Program was a pilot project to 

determine whether a 4-week course in palliative 

medicine (PM) would improve knowledge and skills 

in physicians from around the world. The 5 areas of 

focus were: basic PM knowledge and skills; teaching 

and presentation skills, and effective feedback; 

population-based model of palliative care; goal 

setting; and self-care/burnout avoidance. 

Study designs and methods: 21 physicians from 

14 countries participated in 1 week of didactic and 3 

weeks of bedside training in the inpatient, 

consultation, and home care settings. The 4 cohorts 

each completed online pre- and post-course 

evaluations and provided qualitative feedback. The 

objective evaluations of attitudes, concern, and 

knowledge were analyzed using the Wilcoxon Signed- 

Rank test. A ‘repeated measures with grouping factor’ 

analysis was performed to evaluate the individual 

knowledge scores by group. The Friedman test was 

used to evaluate the changes in competence at 3 time 

points. 


Results and conclusions: After the program, the 

IVS level of concern related to PM decreased 

significantly (p=.001). Their knowledge improved 

significantly (p< .001) with a 24.5% change on a 34item 

evaluation. Their self-rated competence also 

improved significantly (p< .001). There was no 

change in attitude. One comment about the program 

“It was a great experience to spend a month… with 

Collagues from all over the world where we could share our 

own experience and all learn from the others. The program 

has very clear educational goals and they are very useful.” 

Another comment, “I will say, That it was great 

experience, full of inspiration. That this programs makes 

you able to see the best part of the end of life and how you 

can contribute to that.” Overall, these results show that 

this 4-week program in PM had a significant, positive 

impact on the IVS. 

Main source of funding: National Cancer Institute 

Administrative Supplement to 5R25 CA 104990 



Dying in Europe: A Public Health Perspective 

on Palliative Care 

Hasselaar J. 1 , Engels Y. 1 , Jaspers B. 2 , Menten J. 3 , Vissers 

K. 1 , Europall 

1 Radboud University Medical Center Nijmegen, 

Nijmegen, Netherlands, 2 Malteser Hospital Bonn/ 

Rhein-Sieg, Bonn, Germany, 3 UZ Leuven 

Gasthuisberg, Leuven, Belgium 

Aims: To develop a public health perspective on 

palliative care by estimating the population in Europe 

that may benefit from a palliative care approach and 

to consider differences across European countries. 

Methods: Descriptive study. A model was 

constructed, based on the literature, to identify 

persons that may benefit from a palliative care 

approach. The model concentrated on cancer and 

other chronic disease. Publicly available disease data 

of all deaths from EU-27 countries in 2007 (some 

countries 2006) were retrieved via death certificates as 

collected by the European statistics office Eurostat. 

Future expectations were derived from the United 

Nations Population Prospect. 

Main outcome measures: It was measured to what 

extent people across European countries died from 

cancer and chronic diseases in 2007. Additionally, 

detailed specification was given of which particular 

diseases people were dying from. 

Results: Death certificates of 4,8 million deceased 

European persons were included. In 2007, over 2 

million European people died from cancer or other 

chronic diseases. Cancer counted for the majority of 

this (26.2%). Additionally, it was shown that general 

crude death rates and death rates for cancer and 

chronic diseases in particular, largely vary across 

European countries indicating different needs for 

palliative care. Also, the expected future number of 

dying people varies considerably across countries. 

Finally, data were plotted in a scatter diagram 

showing four quadrants of European countries with 

possibly different needs for public health strategies on 


Conclusions: European policy makers should take 

into account that 

(1) palliative care for non-cancer deserves more 

attention, 

(2) European countries may differ in their need for 

long and/or short term palliative care strategies 

(3) norms on palliative care provisions in Europe 

should be based on the (expected) number of dying 

people in a country. 

Free Communication – Organisation 

of Services 



Costing Palliative Care Services in Romania 

Mosoiu D. 1 , Dumitrescu M. 1 , Turitz S. 2 

1 Hospice ‘Casa Sperantei’, Brasov, Romania, 2 Open 

Society Institute, New York, NY, United States 

Aim: To develop a costing framework for homecare 

and in-patient services in order to facilitate inclusion 

of palliative care services in the public funding 

scheme. 

Method: Surveys of district insurance houses, health 

boards and palliative care providers using FOIA was 

performed to inform about actual allocation of 

resources and cost/patient. Minimum standards for 

palliative care homebased services and inpatient units 

were developed with the National Palliative Care 

Coalition and unit cost was agreed. On this basis 

costing frameworks for palliative care in home 

settings and in-patient units were developed with 

support from an international expert. The frameworks 

were refined through consultation with economists 

from district boards. Advocacy at various levels was 

carried out. 

Results: Public money was previously allocated only 

for in-patient services. The existing funding 

mechanism was per bed/patient the amount ranging 

from 90 to 420 RON. There was no uniformity in data 

collection or recording elements of cost at district 

level. The new homecare/inpatient standards 

established the core team, workload/staff categories, 

contact time with the patient/staff, minimum 

materials and medication needed, requirements for 

setting up home care and in patient services. The 

agreed unit costs were per visit and episode of care for 

home care services and bed/day for in patient. 

Frameworks to calculate these unit costs were 

developed. They included staff cost, direct cost, 

indirect cost and set up cost of palliative care as a 

developing service in our country. Unit cost was 103 

RON/visit and 325RON/bed/day. The National 

Funding Body accepted the new cost calculation and 

included funding for palliative home based services in 

the public regulations allocating 100 RON/visit. 

Conclusion: This is a major policy change achieved 

by the use of solid research grounded data. OSF, 

funder of the study, is supporting this approach in 

other countries including Moldova, Georgia and 

Ukraine. 



Evaluation of the Marie Curie Cancer Care 

‘Delivering Choice Programme’ in the United 

Kingdom: Controversies, Politics and Evidence 

Payne S. 1 , Seymour J. 2 , Ingleton C. 3 





Sheffield, Centre for Health & Social Care, Sheffield, 


Research aims: Marie Curie Cancer Care, a UK 

based charity, implemented the Delivering Choice 

Programme (DCP) in a number of areas across the UK 

starting in Lincolnshire in October 2004. A key 

objective of the DCP was to help providers and 

commissioners of palliative care to redesign services 

in order for patients to have more choice over their 

place of care and death. 

Study design: Marie Curie Cancer Care 

commissioned a four year independent formative 

mixed methods evaluation involving: surveys, 

interviews, focus groups, documentary data from 

patients, family carers, nurses, GPs, key stakeholders. 

The study design involved baseline evaluations prior 

to the DCP by 2007, and final evaluations after 

implementation of the DCP by 2009 in three areas: 

Lincolnshire, Tayside (Scotland) and Leeds. This paper 

represents a comparative analysis across all the 

evaluated sites, examining 9 complex interventions, 

drawing upon the RE-AIM framework. 

Results: The evidence will be presented in five 

categories: 

· Reach - the extent to which the DCP reached its 

intended audience 

· Effectiveness - improvements or adverse effects of the 

DCP 

· Adoption - the extent to which the DCP was taken 

up in various parts of the settings 

· Implementation - the extent to which the DCP was 

delivered as intended 

· Maintenance - the sustainability of the change 

attributable to the DCP at both individual and 

organisational levels 

Conclusions: The DCP innovations tended to focus 

on: co-ordination of care; delivery of high quality of 

care in all settings; care in the last days of life. 

Arguably, this was a necessary prioritisation of 

resources and an appropriate emphasis on some 

particularly critical shortcomings in service delivery 

which were shared across the three areas in which the 

DCP innovations were introduced. In addition, it is 

clear that because of the whole systems approach 

taken, the DCP acted as a catalyst for change, even if 

at times this was a painful and difficult process. 





Patterns of Integrated Oncology and 

Palliative Care (P-IOPC): Shared and 

Simultaneous Care of Specialist Palliative 

Care and Oncology 

Strasser F. 1 , Blum D. 1 , de Wolf-Linder S. 1 , Oberholzer R. 1 , 

Berisha L. 1 , Schmitz N. 1 , Bechtold A. 1 , Omlin A. 1 , Widmer 

C. 2 


Medicine, St.Gallen, Switzerland, 2 Cantonal Hospital 

St.Gallen, Oncology, St.Gallen, Switzerland 

Background: The integration of medical disciplines, 

such as medical oncology, and specialist palliative 

care (PC) early in the course of disease until death is 

an increasingly accepted and pursued goal. 

Outpatient clinics may provide an important 

contribution to this integration, in addition to 

inpatient PC units. Preliminiary prior data suggested 4 

P-IOPC: oncology only [W], PC only [Z], 

switch/shared care [X], simultaneous care [Y]. 

Aim: To investigate whether the P-IOPC occur also in 

the outpatient clinics. 

Methods: All in- and outpatient service (PC and 

oncology) contacts following the first outpatient PC 

clinic visit were tracked for date and type. P-IOPC 

were identified by qualitative visual analysis, refined 

by consensus, and after pilot testing in calibration 

samples. ESAS data were collected as available, 

survival data obtained from charts and GP´s. The P- 

IOP were reanalysed for outpatient visits only. ESAS 

data will be compared for the four P-IOPC and when 

switches occured. Descriptive analysis is performed. 

Results: Of 367 patients (pts), 72 (63y, 43%F, 224 

days survival) were (as previously reported) in pattern 

W, 86 (62y, 19%, 212d) in X, 66 (59y, 42%, 285) in Y, 

143 (67y, 46%, 112d) in Z. Of 83 pts (3 reclassified) of 

P-IOPC X (shared), 64 remained X (defined as AX), 18 

were AW and 1 AZ; of 66 pts of P-IOPC Y 

(simultaneous) 48 remaind Y (now AY), 14 became 

AX, and 4 AW. This data suggest that a miniority of 

pts (22/149: 15%) was classified as shared or 

simultaenous care only because of PC inpatient 

admission. Analysis of symptom burden in the 

outpatient and full sample is ongoing, including a 

larger data set (incl. one year more pts). 

Conclusion: Our data suggest that integration of 

oncology and specialist PC in the outpatient clinic 

setting is a lived reality. Further research will 

investigate reasons for shared/simultaneous care (e.g., 

physicians, pts symptom burden, specific symptoms, 

tumor type). Collaboration among centers of IOPC is 

desirable. 



Public Preferences for Place of Death: Results 

from a European Cross-national Survey 

Gomes B. 1 , Higginson I.J. 1 , Calanzani N. 1 , Cohen J. 2 , 

Deliens L. 3 , Daveson B.A. 1 , Bechinger-English D. 1 , 

Bausewein C. 1,4 , Ferreira P.L. 5,6 , Toscani F. 7 , Meñaca A. 8 , 

Gysels M. 8 , Ceulemans L. 9 , Simon S. 10 , Pasman H.R. 3 , 

Albers G. 3 , Hall S. 1 , Murtagh F. 1 , Haugen D.F. 11,12 , 

Downing J. 13 , Koffman J. 1 , Pettenati F. 7 , Finetti S. 7 , 

Antunes B. 5 , Harding R. 1 , on behalf of PRISMA 



Kingdom, 2 End-of-Life Care Research Group, Ghent 

University & Vrije Universiteit Brussel, Brussels, 

Belgium, 3 VU University Medical Center and EMGO 

Institute for Health and Care Research, Palliative Care 

Center of Expertise and Department of Public and 

Occupational Health, Amsterdam, Netherlands, 

4 Deutsche Gesellschaft fuer Palliativmedizin, Berlin, 

Germany, 5 Centre for Health Studies and Research of 

the University of Coimbra (CEISUC), Coimbra, 

Portugal, 6 University of Coimbra, Faculty of 

Economics, Coimbra, Portugal, 7 Fondazione Lino 

Maestroni -ONLUS, Cremona, Italy, 8 University of 

Barcelona, Barcelona Centre for International Health 

Research (CRESIB), Barcelona, Spain, 9 University 

Antwerp Belgium, Antwerp, Belgium, 10 Center for 

Palliative Medicine, University of Cologne, Cologne, 

Germany, 11 University of Science and Technology, 

Trondheim, Norway, 12 Haukeland University 

Hospital, Bergen, Norway, 13 Formerly African 

Palliative Care Association (APCA), Kampala, Uganda 

Aim: To examine variations in the most and least 

preferred places of death in 7 EU countries, and the 

influence of experiences (of illness, death & dying) 

and facilitating conditions (e.g. socio-demographics). 

Methods: Informed by social psychology models, we 

63 

Free 

communication 

sessions

Free 

communication 

sessions 


used a systematically developed and piloted 

questionnaire to measure public preferences and 

priorities for end of life care. We sampled households 

using random digit dialling and interviewed 9,270 

subjects aged ≥16 in Germany, England, Netherlands, 

Belgium, Portugal, Spain and Italy. We assessed 

preferences in a scenario of serious illness with < 1 

year to live. Data were analysed using descriptive & 

bivariate statistics. 

Results: Home was the most preferred place of death 

in all countries (83% in the Netherlands to 56% in 

Portugal), followed by hospices/palliative care units 

(29% in England to 8% in Belgium). The least 

preferred place of death was hospital in England, 

Belgium, the Netherlands, Spain (41, 40, 35, 29%), 

and care homes in Portugal and Italy (30 and 26%). 

No single factor influenced a preference to die at 

home across all countries. In England, home was 

more often the preferred place for younger and 

healthier people (p < .001 and .03), those 

separated/divorced and with no experience of 

family/friends’ death in the last 5 years (p=.009 and 

.02). Hospital was more often the least preferred place 

for younger people, women and those with higher 

education in the Netherlands (p=.005, .003 and .02); 

and for women in Belgium (p=.01). Preferences of 

people who reported having a serious illness did not 

differ from those without a serious illness. 

Conclusions: This is the first survey to demonstrate 

key commonalities but also considerable crossnational 

variation in EU citizens’ preferences for 

where to die, and in how they rank their preferences. 

Service planners should consider this when 

organising palliative care services, and also the way in 

which facilitating conditions affect preferences in 

their country. 



Outpatient-based vs. Hospital-based Palliative 

Care in America: A Prospective Comparison of 

Patient Needs between Service Delivery 

Locations 

Kamal A.H. 1 , Bull J. 2 , Globkpor A. 1 , Abernethy A.P. 1 , 

Carolinas Palliative Care Database Consortium 

1 Duke University Medical Center, Duke Clinical 

Cancer Research Program, Durham, NC, United 

States, 2 Four Seasons Hospice and Palliative Care, Flat 

Rock, NC, United States 

Research aims: In America, non-hospice palliative 

care is predominantly a hospital-based consultative 

model (HBPC). Outpatient-based palliative care 

(OBPC) is growing to meet the increasing palliative 

care needs of community patients. Most available 

data focuses on inpatients; we explored how this 

compares to the growing outpatient palliative care 

population. 

Methods: Standardized prospective data were 

obtained during all consultations from 5/08 to 7/10 

from 1 HBPC and 2 mixed model sites in The 

Carolinas Palliative Care Database. Comparisons 

focused on the first OBPC or HBPC consultation; 

descriptive statistics, Fisher’s exact test and chi square 

analyses were used. 

Results: 3441 patients were included (OBPC=1033; 

HBPC=2408). Groups did not differ significantly by 

age or gender. Fatigue, anorexia, and pain were the 

most common symptoms in both groups. Presence of 

any fatigue severity was significantly higher in the 

OBPC group (86% [95% CI: 84-88] vs. 69% [95% CI: 

67-72], p< 0.0001); although moderate/severe fatigue 

didn’t differ between groups. Moderate/severe 

anorexia was significantly higher in HBPC (42% [95% 

CI: 40-45] vs. 26% [95% CI: 24-29] p< 0.0001). Pain 

was more frequently reported in OBPC (51% [95% CI: 

48-54] vs. 39% [37-41] p< 0.0001), although pain 

requiring intervention didn’t differ between groups. 

Depression across all severities was significantly more 

prevalent in OBPC (p< 0.0001). Palliative 

Performance Score and quality of life were lower in 

HBPC (both p< 0.0001). Reasons for consultation 

differed greatly; OBPC referrals were more commonly 

for symptom management and psychosocial needs 

while HBPC concerned goal-setting and end-of-life 

issues (p< 0.0001). 

Conclusion: In America, there are unique symptom 

management needs and consultation goals for OBPC 

vs. HBPC. There are differing roles for these palliative 

care models; staffing expertise must be matched to 

patient populations and needs. 

Funding provided by a grant from The Duke 

Endowment. 



Palliative Care and Emergency Medicine - A 

Quantitative and Qualitative Needs 

Assessment 

Heimerl K. 1 , Feiler M. 2 , Werni M. 3,4 , Zdrahal F. 4,5 

1 University Klagenfurt, IFF-Palliative Care and 

Organizational Ethics, Vienna, Austria, 2 MA 70 

Wiener Rettung, Wien, Austria, 3 KAV - 

Wilheminenspital, Wien, Austria, 4 Österreichische 

Palliativgesellschaft, Wien, Austria, 5 Caritas der 

Erzdiözese Wien, Wien, Austria 

Aims: Within the trajectories of palliative care 

patients crises are inevitable. In these situations 

emergency physicians often are the only doctors 

available. The study aims at assessing the needs of 

emergency physicians in treatment and handling of 

palliative care patients and at contributing to better 

treatment of palliative care patients by emergency 

doctors. 

Design and methods: A questionnaire was sent to 

the entire population of emergency physicians of a 

distinct provider. The questionnaire contained 5 

closed ended quantitative questions and 3 open 

ended qualitative questions. The survey was 

administered by an emergency doctor as interviewer. 

The analysis was performed by descriptive statistics 

and by content analysis. 

Results: The respond rate was 71%, the respondents 

considered the survey as helpful. The emergency 

doctors estimated the amount of palliative care 

patients to equal approx. 5% of all missions. They 

indicated that 63,6% of palliative patients were 

admitted to hospital, 42,1% of admissions were 

performed against the conviction of the emergency 

doctor, 15,9% against the will of the patient. Among 

the reasons for admission to hospital the interviewed 

mentioned the will of the relatives as well as 

insufficient home care. The interviewed physicians 

described that they are facing major challenges when 

treating palliative care patients. 

They considered the following supportive measures as 

desirable: cooperation with palliative care team 

(88,4%), acute palliative care beds in hospital (59,4%), 

palliative care hotline (55,1%), indoor training 

(50,7%). 

Conclusions: In the treatment of palliative care 

patients that are facing a crisis in their illness 

emergency doctors play a relevant role. In order to 

fulfil the task emergency doctors need supportive 

measures. In the project good experiences have been 

made with indoor trainings for emergency doctors by 

palliative care physicians. 



Poster Discussion Sessions 

Poster discussion 

sessions 

65 

Poster Discussion 

Sessions


Sessions 



Poster Discussion I 

Abstract number: PD1.1 

Abstract type: Poster Discussion 

Giving the End-of-Life Back to People: 

Advance Care Planning in Flanders 

Keirse M. 1,2 , Mullie A. 2 , Cosyns M. 2 , De Lepeleire J. 1,2 , 

Pieters K. 2 , Hermans F. 2 , Aerts M. 2 , Dillen L. 2 , Vanden 

Berghe P. 2 

1 Katholieke Universiteit Leuven, Leuven, Belgium, 

2 Federation of Palliative Care Flanders, Wemmel, 

Belgium 

Introduction: Advance care planning (ACP) 

concerns a process of thinking and communicating 

between patient, his relatives, and caregivers about 

future care. The last decades ACP receives more and 

more attention as a mean to improve care at the end 

of life. Research indeed has shown that ACP improves 

patient and family satisfaction with care and reduces 

anxiety, depression, and stress in surviving relatives. 

Yet, in Flanders (Belgium) a generally accepted 

framework for ACP was lacking. 

Aims: Therefore the Federation of Palliative Care 

Flanders started a project to develop an evidence 

based and widely accepted ACP framework in close 

collaboration with regional networks. More 

concretely, the project aims to sensitize and educate 

the general public and professionals about the 

importance of thinking and communicating about 

preferred end-of-life care. 

Method: Based on a literature review a 

multidisciplinary workgroup developed a mission 

statement with a concrete roadmap of actions 

targeting both the general audience (GA) and 

professional caregivers (PC). 

Results: Concrete deliverables of the project are: 

1) a media campaign (GA), 

2) a brochure “Also the last journey is something you 

want to discuss together” with an introducing leaflet 

(GA), 

3) a document “Declarations of intent regarding my 

health care and end-of-life”, 

4) a training package (PC), 

5) a telephone information line, and 

6) a website. 

Discussion: The project has resulted in a general 

awareness of the importance of ACP. This is 

demonstrated by for example diverse regional projects 

implementing the general ACP framework in specific 

palliative care settings. The success of the project may 

be explained by the extensive media coverage, the 

multidisciplinary composition of the workgroup, and 

the two-track model of targeting general audience and 

professionals. Future efforts will be directed to 

regional implementation and a qualitative study 

regarding views and experiences about the ACP 

framework. 



The Impact of an Incurable Illness on 

Patients’ Personal Development 

Gorog I. 1 

1 Hospice ‘Casa Sperantei’, Medical, Brasov, Romania 

Aim: To explore personal development and specific 

needs of patients with an incurable illness. 

Methods: qualitative research including content 

analysis of illness narratives and of semi-structured 

focused interviews. The participants were hospice 

patients, who expressed their consent. 

Results: Both the 89 narratives collected during five 

years of hospice practice and the 12 semi-structured 

interviews, highlight as a common theme the effort of 

the patients to adapt to the multiple physical, 

emotional, social and spiritual consequences of the 

illness. Helplessness, dependence on others, worry of 

being a burden to loved ones, is remembered 

frequently as the heaviest burden. As the content 

analysis of narratives shows, acknowledging the 

gravity of the situation progresses in different people 

at different paces, and intuition of the end of life 

approach is expressed by fear, allusions and story of 

dreams and visions rather than by direct 

communication. Narratives of patients state a 

continuous process of maturation in most people, 

expressed by seeking solutions to put their own affairs 

in order, through valued relationships with close 

people and by the effort to understand and integrate 

life experiences. Faith is an important source for 

maintaining hope and comfort. Interviews highlight 

isolation of patients in advanced stages of illness. In 

discussions with medical personnel severely ill people 

speak less spontaneously about family matters, 

emotional and spiritual issues, compared to 

symptoms, treatments and medical interventions. 

Semi-structured interviews proved to be a useful way 

to investigate patients´ concerns related to socialemotional-spiritual 

issues. 

Conclusions: Whilst approaching end of life, 

emotional burdens and spiritual challenges are 

strongly present, though rarely expressed by patients 

in discussion with medical personnel. Specific 

methods are needed to explore these issues and for 

appropriate care. 



Needs Assessment for Palliative Care Services 

in a Tertiary Referral Hospital in Sub-Saharan 

Africa: Opportunity to Reach Out to those in 

Need of Palliative Care 

Lewington J. 1 , Namukwaya E. 2 , Limoges J. 3 , Leng M. 4 , 

Harding R. 5 


MSc Student, Dept. of Palliative Care, Policy and 

Rehabilitation, London, United Kingdom, 2 Makerere 

University College of Health Sciences, Palliative Care 

Unit, Dept. of Medicine, Kampala, Uganda, 3 Hospice 

Africa Uganda, Kampala, Uganda, 4 Makerere 

University College of Health Sciences, Dept. of 

Medicine, Kampala, Uganda, 5 King’s College London, 

Cicely Saunders Institute, Dept. of Palliative Care, 

Policy and Rehabilitation, London, United Kingdom 

Aims: To identify palliative care need in a Ugandan 

hospital to assist in service development. Objectives 

were 

(i) to determine the point prevalence of patients with 

active life limiting disease (ALLD) in a sample of 

inpatients and 

(ii) to identify need for palliative care in these 

patients. 

Methods: A survey of patient notes was completed 

on four wards. Patients with ALLD were interviewed 

using a structured questionnaire concerning physical, 

psychosocial and spiritual need. ALLD is defined as 

any disease causing symptoms and which is likely to 

cause the patient’s death. This included HIV/AIDS, 

malignancy and chronic organ failure. Inclusion 

criteria were patients 13 years and older with available 

notes. Patients with no available interpreter were 

excluded. Data were entered into SPSS for analysis. 

Results: Of 267 patient notes examined, 122 (46%) 

were found to have an active life limiting disease. The 

most prevalent diagnosis was HIV/AIDS (74/122, 

61%); then cancer (22/122, 18%), heart failure 

(11/122, 9%), renal failure (11/122, 9%), liver failure 

(3/122, 2%) and chronic obstructive pulmonary 

disease (1/122, 1%). 78/122 patients consented to be 

interviewed. The commonest reported symptoms 

were lethargy/weakness (86%), pain (69%) and cough 

(62%). Of patients with high pain scores (37/78, 47%) 

three received oral morphine. Social problems 

included limited access to food (11/78, 14%), inability 

to work (72/78, 92%) and having unaffordable 

medical expenses (39/78, 50%). All those with a faith 

(76/78) found strength in this but 33% expressed 

need for increased faith support. 

Conclusion: The prevalence of ALLD reported here 

(46%) is greater than reported in European studies 

(12-23%).This reflects the increased disease 

prevalence, presentation at a later disease stage and 

limited access to curative therapies in Sub-Saharan 

Africa. There is need for symptom control, food, 

financial assistance and spiritual support. Service 

development should be tailored to meet this need. 



Serum Concentrations of Opioids when 

Comparing Two Switching Strategies to 

Methadone for Cancer Pain 

Moksnes K. 1 , Kaasa S. 2,3 , Paulsen Ø. 4 , Rosland J.H. 5,6 , 

Spigset O. 7,8 , Dale O. 9,10 

1 Pain and Palliation Research Group, Norwegian 

University of Science and Technology (NTNU), 

Department of Circulation and Imaging, Trondhem, 

Norway, 2 Pain and Palliation Research Group, 

Norwegian University of Science and Technology, 

Department of Cancer Research and Molecular 

Medicine, Trondheim, Norway, 3 St.Olav’s Hospital, 

Department of Oncology, Trondheim, Norway, 

4 Telemark Hospital, Department of Medicine, 

Palliative Medical Unit, Skien, Norway, 5 Sunniva 

Clinic for Palliative Care, Haraldplass Deaconess 

Hospital, Bergen, Norway, 6 University of Bergen, 

Department of Surgical Science, Bergen, Norway, 

7 St.Olav’s Hospital, Department of Clinical 

Pharmacology, Trondheim, Norway, 8 Norwegian 

University of Science and Technology, Department of 

Laboratory Medicine, Children’s and Women’s 

Health, Trondheim, Norway, 9 Pain and Palliation 

Research Group, Norwegian University of Science and 

Technology, Department of Circulation and Medical 

Imaging, Trondheim, Norway, 10 St.Olav’s Hospital, 

Department of Anaesthesiology and Emergency 

Medicine, Trondheim, Norway 

Aim: Pharmacokinetic aspects of two switching 

strategies from morphine or oxycodone to 

methadone were compared; the stop and go (SAG) 

and the 3-days switch (3DS) strategy. 

Methods: 42 cancer patients on morphine or 

oxycodone with pain and/or side effects were 

randomized in this prospective, open, parallel group, 

multicenter trial. The methadone dose was calculated 

using a dose dependent conversion ratio. Trough 

serum concentrations of total methadone, Rmethadone, 

morphine, morphine 6-glucurodnide 

and oxycodone were measured day 1, 2, 3, 4, 7 and 14. 

Primary outcome was the number of patients with 

methadone concentrations in apparent steady state 

(C SS ) day 4. Secondary outcomes were exposure to 

opioids the first 3 days, interindividual variability of 

the serum concentrations of the respective opioids, 

and correlation between total methadone/Rmethadone 

and pain intensity (PI) day 3. 

Results: 35 patients received methadone (16 in the 

SAG group, 19 in the 3DS group). The median 

preswitch morphine equivalent doses were 690 

mg/day (SAG) and 1200 mg/day (3DS) (ns). 40% of 

the patients in the SAG group and 22% in 3DS group 

reached apparent C SS of total methadone 

concentration day 4 (p=0.40). The SAG group was 

significantly less exposed to morphine, M6G and 

oxycodone and significantly more exposed to total 

methadone/R-methadone the first 3 days. Methadone 

concentrations showed less variability than those of 

oxycodone and morphine. No correlation was found 

between total or R-methadone and PI. 

Conclusion: As expected, the SAG group was more 

exposed to methadone and less exposed to 

morphine/oxycodone initially than the 3DS group. 

However, the patients in the SAG group did not reach 

stable serum concentrations of methadone earlier. 

The pharmacokinetics of methadone was more 

predictable than that for morphine and oxycodone. 

Serum concentrations of total and R-methadone was 

not related to pain intensity. 



Older Patients with Advanced Heart Failure: A 

Qualitative Study on their Experience with 

Delivery of Care in Germany 

Klindtworth K. 1 , Gerlich M.G. 1 , Hager K. 2,3 , Pfisterer M. 4,5 , 

Oster P. 5,6 , Schneider N. 1,5 



Research, Hannover, Germany, 

2 Diakoniekrankenhaus Henriettenstiftung, Clinic for 

Medical Rehabilitation and Geriatrics, Hannover, 

Germany, 3 Hannover Medical School, Medical 

Teaching Unit in Geriatrics, Hannover, Germany, 

4 AGAPLESION Elisabethenstift Evangelisches 

Krankenhaus, Clinic for Geriatrics and Center for 

Palliative Medicine, Darmstadt, Germany, 5 Research 

and Study Program on Geriatrics, Robert Bosch 

Foundation, Stuttgart, Germany, 6 AGAPLESION 

Bethanien Hospital, Geriatric Center at the 

University, Heidelberg, Germany 

Research aims: Heart failure is one of the leading 

causes of death and can result in high palliative care 

needs. Little is known about the perspectives of older 

patients with advanced heart failure regarding 

delivery of care in Germany, e.g. availability and 

appropriateness of generalist and specialist services. 

The aim of this study was to explore the experience of 

old and oldest heart failure patients with medical, 

nursing and social care within the German health care 

system. 

Study design and methods: Qualitative study 

based on semi-structured face-to-face-interviews with 

25 patients. Main inclusion criteria were age ≥70 years 

and heart failure NYHA III/IV. Patients were recruited 

to reflect a range of old and very old age, sex, and 

social conditions. The interviews were audio recorded 


and fully transcribed. Qualitative descriptive analyses. 

Results: The interviews were finished in September 

2010. Mean age of the participants (14 female, 11 

male) was 85 years (71-98 years). Living conditions: 

13 alone, 5 with spouse/relatives, 3 assisted living and 

4 in nursing homes. Ongoing qualitative analyses. 

The findings as well as experience in conducting the 

interviews will be presented at the congress. 

Conclusion: The study will improve the 

understanding of the experience of older patients 

with advanced heart failure within the framework of 

the German healthcare system, and help to develop 

future models of appropriate palliative and end-of-life 

care services. The study will be continued 

(longitudinal design) up to 18 months with 

interviews every 3 months to explore changes of the 

patient perspectives over time when the disease 

progresses. 

Funding: Robert Bosch Foundation 



Wherever They May Be! An Audit of All Deaths 

in All Settings 

Groves K.E. 1 , Finnegan C. 2 

1 West Lancs, Southport & Formby Palliative Care 

Services, Queenscourt Hospice, Southport, United 

Kingdom, 2 Mersey Deanery, Liverpool, United 


Background: The End of Life (EoL) Care Strategy 

2008 suggests the terminally ill should be included on 

an EoL register, preferences for EoL care should be 

respected and integrated care pathways for the dying 

(ICP) should support all expected deaths. In 2006 a 

retrospective audit of all cancer deaths looked at 

these, but only accounted for a quarter of all deaths. 

Aim: To see how these three standards were met in 

the local area for all deaths. 

Method: May-July 2009 data was collected on local 

death, from all causes in all healthcare settings. An 

audit proforma was completed by a specialist 

palliative care services clinician, from the clinical 

records & speaking directly to health professionals 

who provided end of life care. 

Results: 560 audit forms were completed (approx 

89% deaths). 169 (30%) cancer, 242 (43%) male & 458 

(82%) over 70 years of age. 72 (13%) sudden deaths in 

apparently previously well patients, 83 (15%) 

predictable deaths after a short illness and in 15 (3%) a 

complete information was unobtainable. The 

remaining two groups were those with advanced 

disease or multiple co-morbidities. 242 (43%) 

expected death after steady decline & 148 (26%) 

unpredicted rapid decline. The results of the analysis 

showing those on an end of life register, with 

preferred place of care and whether they achieved it, 

and whether they had an integrated care of the dying 

pathway to support the death is presented here. 

Conclusions: 64% cancer & 8% non cancer, non 

sudden, deaths were on an EoL register. A preferred 

place of care (PPC) is more likely to be known for 

cancer patients but a PPC of ‘home’ is more likely to 

be met in non cancer & those living alone. 90% 

achieve PPC if patient & carer agree. An ICP is more 

likely to support dying in those where death is from 

cancer, is predicted, is outside hospital, whose dying is 

diagnosed more than 48 hours before it happens & 

where the patient is on an EoL register or known to 

specialist palliative care services. 



The Incidence and Evolution of Opioid 

Toxicity in Cancer Patients: Experiences of a 

Regional Cancer Unit 

Birch E. 1 , Noble S. 2 , Tranter B. 3 , Mitchell H. 3 , Rowlands J. 3 , 

Pease N. 3 

1 Royal Gwent Hospital, Palliative Medicine, Newport, 

United Kingdom, 2 Cardiff University, Palliative 

Medicine, Cardiff, United Kingdom, 3 Velindre 

Hospital, Palliative Medicine, Cardiff, United 


Background: Opioid toxicity is a spectrum of 

symptoms resulting from activation of receptors 

outside the ‘pain system’ and includes drowsiness, 

confusion, hallucinations and myoclonus. Its may 

contribute to psychological distress, significant 

morbidity and potentially mortality. Its prevalence 

varies from 15-50%, yet there is little published on the 

chronology of symptoms, through which an early 

warning system could be identified. The National 

Patient Safety Agency has highlighted the importance 

of safe medicines management and the recognition of 

opioid toxicity has been identified as a particular area 

of intervention. 

Aim: To investigate the prevalence of CNS opioid 

toxicity within a regional cancer centre and identify 

early warning signs that would allow a reduction in 

morbidity within the inpatient population. 

Method: A retrospective analysis of the Health Care 

Record (HCR) of all inpatients prescribed a strong 

opioid medication over a period of a month was 

undertaken looking for the presence and evolution of 

CNS symptoms. Patients with possible confounding 

reasons for CNS symptoms were excluded. 

Results: The HCR of 42 patients were examined of 

which 7 (17%) had documented opioid toxicity. The 

most common symptoms were drowsiness (14%), 

impaired cognition (9%), myoclonus (9%), 

hallucinations (7%), and respiratory depression (2%). 

No reliable pattern to the development of symptoms 

could be identified within this small cohort, however, 

newly requiring assistance with eating and drinking, 

or reduced fluid intake requiring intravenous 

hydration was common to all but one of the patients. 

Discussion: Despite the limitations of this study 

being retrospective and relying on accurate 

documentation, it suggests opioid toxicity to be a 

common occurrence in cancer inpatients and that 

early detection allows reversal of symptoms and 

improved patient care. A prospective observational 

study is being planned to further investigate early 

warning signs. 



What Influences Patients’ Decisions on 

Artificial Hydration at the End of Life? A Qmethodology 

Study 

Malia C.E. 1 , Bennett M.I. 2 

1 St Gemma’s Hospice, Leeds, United Kingdom, 

2 Lancaster University, Lancaster, United Kingdom 

Context: Artificial hydration (AH) is used to palliate 

patients with reduced fluid intake at the end of life but 

is a controversial practice. Patients’ involvement in 

decision making varies and little is known about 

patients’ understanding of the benefits and burdens 

of AH. 

Objectives: To identify the factors that patients 

consider most important when making decisions 

regarding artificial hydration (AH) at the end of life. 

Methods: Interview study using Q-sort methodology 

conducted with 20 patients with advanced disease. 

Participants in a Q-methodology study are given a 

number of statements about the topic in question. 

Respondents are asked to rank-order the statements 

according to the extent to which they agree with 

them (Q-sorting.) Completed Q sorts are subject to 

factor analysis in order to identify the number of 

natural groupings of Q sorts by virtue of their being 

similar or dissimilar to each other. People with similar 

views on a subject will share the same factor. 

Results: Several domains appear to influence a 

decision about AH: the patient’s understanding of AH, 

their philosophical position on end of life care, the 

process of discussion, and who makes the final 

decision. Patients generally based their decision on 

whether AH would improve quality of life though 

prolonging life was important for some. Hydration 

was not considered a burden. Many would want a trial 

of AH in the event that they could no longer drink. 

Patients wanted to be guided by medical opinion. All 

patients welcomed the opportunity to discuss AH. 

Conclusion: Patients view AH as an important issue 

and are keen to be involved in decision making. 

Healthcare professionals may with-hold AH at the end 

of life because they perceive it as a burden on patients 

though this view is not shared by patients. Some 

patients lack understanding regarding the likely 

benefits of AH. Research examining the impact of 

clinical information regarding AH on patients’ 

decision making is now needed. 




Poster Discussion II 



Paediatric Palliative Home Care: Experience 

of Bereaved Parents with a Hospital-based 

Liaison Team 

Pousset G. 1 , Ruysseveldt I. 1 , Imler I. 1 , Renard M. 1 , Van 

Geet C. 2 , Bilzen J. 3 

1 University Hospitals Leuven, Paediatric Palliative 

Home Care Team, Leuven, Belgium, 2 University 

Hospitals Leuven, Paediatrics, Leuven, Belgium, 3 Vrije 

Universiteit Brussel, Brussels, Belgium 

Introduction: The KITES-team of Leuven University 

Hospital, Belgium, is a hospital-based liaison team 

that originated from a pediatric hemato-oncology 

unit and provides, organises and coordinates 

palliative home care for terminally ill children, not 

limited to cancer patients, and their families. We 

aimed to evaluate the support delivered by the KITESteam. 

Methods: A retrospective cross-sectional survey was 

conducted among 124 parents of 62 children who 

died between November 2004 and November 2008 

while supported by the KITES-team. Parents were 

informed about the study design and aim and were 

only sent a questionnaire when they provided written 

informed consent to participate. 

Results: Sixty-four of 124 contacted parents 

consented to participate, of which 47 completed and 

returned the questionnaire. Most parents indicated 

that different professional caregivers were involved in 

palliative care, and that their degree of involvement 

was experienced as sufficient. Eighty percent of 

parents reported that their child died at home, 93.3% 

that their child died at the planned place and 91.1% 

reported a satisfaction score of 8/10 or better for the 

actual place of death. All parents indicated that care 

was available to them 24/7 and 80.0% thought the 

KITES-team was involved on time. Perceived quality 

of care delivered by home nurses and general 

practitioners was good or very good for 93.1% and 

85.7% of parents. For 89.7% and 87.2% of parents, the 

home nurse and the general practitioner usually or 

always paid attention to their needs. Ninety-six 

percent of parents would use the KITES- team again, 

and 90.7% gave a satisfaction-score of 8/10 or better 

for the way the end-of-life period of their child went. 

Discussion: Support as delivered by the KITES-team 

is related to high levels of satisfaction amongst 

bereaved parents, and represents a feasible model for 

pediatric palliative care that meets the principal goals 

of palliative care. 



Antibiotic Therapy within a Specialist 

Palliative Care In-patient Unit – Too Much of a 

Good Thing? 

O’Reilly V. 1 , Gleeson A. 1 

1Our Lady’s Hospice and Care Services, Dublin, 

Ireland 

Background: Infection is frequent in patients with 

life-limiting illness with significant impact upon 

quality of life. Antibiotic therapy can play a pivotal 

role on reducing symptom burden but is also 

associated with adverse effects and higher rates of 

nosocomial infection. 

Objectives: To evaluate the incidence of infection 

and decision making around its management within 

an inpatient hospice population.To determine 

current patterns of antibiotic prescribing with view to 

inform on development of a contemporary antibiotic 

policy. 

Methods: Case notes of 48 consecutive admissions 

over an 8 week period underwent retrospective review 

with extraction of relevant data pertaining to 

diagnosis and treatment of infection. Outcome 

measures included rate of completion of antibiotic 

course, documentation of symptomatic benefit 

within case-notes, death within 7 days of treatment 

discontinuation and documentation of adverse 

effects. 

Results: 48 discrete episodes were diagnosed 

amongst 62%(n=30) patients admitted with length of 

stay ranging between 2-80days.Antibiotic therapy was 

received in 91%(n=44) of instances. Empiric 

treatment was usual and oral 

monotherapy(n=32,68%) favoured over parenteral 

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route. Symptomatic benefit was documented within 

72 hours in 45%(n=20)of cases with ESAS reflecting a 

lower rate at 15%(n=7).One third(n=15) did not 

complete the prescribed course. In 35%(n=17) of 

cases, documentation around withholding or 

discontinuation of antibiotic therapy was 

evident.39%(n=19) died within 1 week of stopping 

antibiotics with home discharge achieved by 

25%(n=12). MRSA was isolated in < 1%(n =3). No 

cases of Clostridium difficile were diagnosed during 

the time frame. 

Conclusion: Rates of diagnosis of infection and 

initiation of antibiotic therapy are higher than 

reported in pre-existing literature. Benefit from 

treatment is documented less than half of instances. 

Careful evaluation and frequent review of the role of 

antibiotic therapy within this population is 

warranted. 



Sustaining Improved Palliative Care in Care 

Homes 

Stevenson B. 1 , Moyes R. 1 , Willis A. 1 , Oxenham D. 1 , Fife 

S. 2 , Lyall A. 2 , McCondichie M. 3 , Murray S. 4 

1Marie Curie Hospice, Edinburgh, United Kingdom, 

2 3 NHS Lothian, Edinburgh, United Kingdom, Archiew 

Nursing Home, Edinburgh, United Kingdom, 

4University of Edinburgh, Edinburgh, United 


Aim: To maintain the high impact of a previous 

intervention by a palliative care nurse specialist to 

improve care in 7 nursing homes in Midlothian, 

Scotland. The previous intervention comprised of 

implementing 

1) care planning from admission and ongoing 

assessment, 

2) nurse training in palliative care principles and 

3) end-of-life pathway for the last few days of life. 

Methods: Action research; two Palliative Care Nurse 

Specialists each spent one day per week working 

alongside care home staff and GPs providing support, 

training staff and monitoring progress. Data 

collection included responses to the education 

sessions. The after death data included the prior 

recording of the resident’s preferred place of death, 

resuscitation status, advanced care planning, 

anticipatory prescribing, and use of assessment tools. 

Results: After death analysis data were gathered for 

39 residents who died from January to June 2010, one 

year after the end of the initial project. 90% of 

patients died in the place of their choice with an 

advance care plan in place and information available 

to out of hour’s medical services. 50% had 

anticipatory medicines prescribed and the end of life 

pathway was still widely used. Resuscitation plans 

were completed for 87% of residents. There were no 

hospital admissions for residents who died in this 

phase of the project which should have been avoided. 

Ongoing challenges included high staff turnover and 

difficulties allocating time for the staff training. 

Conclusions: The palliative care nurse specialists 

were able to strategically support and train generalist 

staff to provide high standard end of life care to older 

people in care homes. Further work is necessary to 

assess the optimum level of input and ongoing 

support that specialist palliative care might provide so 

that end of life care in care homes in the UK can be 

reliably good. 



Advance Directives: Knowledge and Attitudes 

of Citizens of One Health Area 

Redondo Molano M.J. 1 , Cobián Prieto M. 2 , Saiz Cáceres 

F. 3 , Rivas Mateos M. 4 , Alonso Ruiz M.T. 3 , Valentín Tovar 

R. 3 , Bonino Timmermann F. 1 

1 Hospital Infanta Cristina, Palliative Care Support 

Team, Badajoz, Spain, 2 Pysicosocial Support Team La 

Caixa, Cáceres, Spain, 3 Hospital San Pedro de 

Alcáncara, Palliative Care Support Team, Cáceres, 

Spain, 4 Hospital San Pedro de Alcáncara, Pain Unit, 

Cáceres, Spain 

Research aims: Know the attitudes and knowledge 

about advance directives of the citizens of one health 

area. 

Design: Descriptive cross-sectional study using a 

specially designed questionnaire and interviews. 

Setting: Cáceres, healthcare area, Spain. 

Participans: 382 citizens of the health care of 

Cáceres. Criteria for exclusion: under 18 and disabled. 

Main measurements: Citizens were interviewed in 

a targeted manner by qualified professionals. 

Results: Answer to 100% of respondents (382). 51, 

8% were women, and mean age was 44, 77(18-97). 

23.30% knew the advance directive, compared to 

76.70% who did not know anything. 67% of those 

with knowledge about advance directives did not 

know they were regulated by law and 93% did not 

know you could choose a representative. 

43.2% had discussed advance directives in the last 

year, valued at 6.11 (0-10) attend a briefing, 7.53 (0- 

10) the importance of having a representative, 7, 76 

(0-10) that his family was informed, 8.13 (0-10) 

assessed the importance for decision making and 

family practitioners, and 3.95 (0-10) would do so in 

the next year. 

Conclusions: The participants are not informed 

about advance directives despite having 5 years 

covered by law, they want to discuss it with their 

families, are interested in information sessions, but 

they would not do it in the next year. The laws in 

force in Spain with regard to advance directives help 

the citizens and health professionals to talk openly 

about the care at the end of life. 



Report of 2 Years Experience of Humour 

Therapy as a New Concept in Palliative Care 

Kessler A. 1 , Mueller M. 2 , Wiedemann G. 3 

1 Oberschwabenklinik GmbH, Oncology, Palliative 

Care, Ravensburg, Germany, 2 Lachmuskel Klinik 

Clowns, Ravensburg, Germany, 3 Oberschwabenklinik 

GmbH, Oncology, Hematology, Palliative Care, 

Ravensburg, Germany 

Introduction: Laughter is the best medicine. In our 

experience terminally ill adult patients still appreciate 

humor as much as healthy individuals. The purpose 

of humor therapy is the improvement of general 

contentedness and well-being of patients by using 

several different humor interventions such as 

spontaenous joking, performing magic or the use of 

music instruments. Our project started in 2/2008 by 

training all staff on our palliative care unit (PCU) in 

humor techniques for use in everyday clinical practice 

and communication. The aim of our pilot study was 

to determine the feasibility of humor therapy as an 

additional offer for our terminal ill patients. 

Methods: In this prospective study all PCU team 

members were offered training by professional clowns 

in 12 teaching courses. Lessons consisted of 

interactive lectures, role plays, learning of humor 

techniques and development of patient 

questionnaire. Trained PCU members used these 

techniques as part of routine care. Additionally twice 

a month a “humor day” is held with professional 

clown performances for patients, their friends and 

family members. 

Results: 24/29 members of our team participated in 

the teaching. More than 480 patients have attended 

the performances of the clowns with only few 

refusals. Most patients taking part in the humor 

interventions either by our staff or the clinic clowns 

experienced pleasure and contentment. When 

measuring pain by visual analog scale (VAS) pain was 

less intense. Communication with depressed patients 

improved. Our study on quality of life (QoL) and 

refinement of humor techniques is ongoing. Updated 

data will be presented. Addtionally the project has 

had a positive influence on our team`s job satisfaction 

and the working atmosphere. 

Conclusions: Humor therapy is an intriguing new 

concept in palliative care. Humor techniques are 

inexpensive, can easily be learned and had high 

acceptance rates by staff and patients. Further formal 

study on humor techniques and QoL is ongoing. 



End of Life Care – What Information Do We 

Need? A Survey of Irish Primary Care Doctors 

Kiely F.G. 1 , Murphy M. 1 , O’Brien T. 1 

1Marymount Hospice, Palliative Medicine, Cork, 

Ireland 

Background: In Ireland, weekend and night 

medical cover for community based patients is 

provided by a deputising service. Doctors working in 

this service do not have direct access to patient’s 

medical records. This survey was designed to identify 

the information that is necessary to offer appropriate 

anticipated end of life care. 

Aim: 

1. To assess the views of Irish primary care doctors on 

what information is necessary to conduct an effective 

end of life care consultation. 

2. To devise a proforma to facilitate efficient transfer 

of relevant information. This form could be 

transmitted to an administrative base and available as 

required by the deputising service. 

Methods: All 380 primary care doctors who are 

providing weekend and night cover to our catchment 

population of 500,000 were surveyed. A questionnaire 

used in a similar study conducted in the Netherlands 

and based on a literature review provided a template 

for this study. A panel of experienced Irish primary 

care doctors was consulted and the questionnaire 

adapted to an Irish context. It was piloted with 30 

primary care doctors and a final version prepared and 

posted to all 380. Questions pertaining to opinions on 

the relevance of information transfer and the type of 

information considered useful were explored. 

Results: Interim analysis of the first 50 respondents 

show 90% doctors would value a structured format for 

information transfer. 52% feel lack of information 

promotes hospital admission. The most important 

information in descending order includes: 

a) Diagnosis (100%) 

b) Patient wishes regarding end of life care (91%) 

c) Anticipated problems and suggested management 

(63%) 

Data collection is ongoing and full analysis of results 

will be complete by January 2011. 

Conclusion: A structured format for information 

transfer regarding end of life care is deemed important 

by primary care doctors when working on-call at 

night and weekends. Diagnosis, patient preference 

and management plans are valued. 



Review of Referral Practices to a Specialist 

Paediatric Palliative Care Service a Tertiary 

Cancer Centre in Urban India 

Dighe M. 1 , Muckaden M. 1 , Balaji P.D. 1 

1 Tata Memorial Centre, Mumbai, India 

Aim: To present the experiences of the Pediatric 

palliative care services (PPCS) at a tertiary cancer 

centre in urban India with reference to referral and 

follow up patterns of patients. 

Methods: Data were gathered by reviewing records of 

99 consecutive patients who were registered with the 

PPCS over 12 months. 4 patients with incomplete 

records were excluded from analysis. Demography, 

referral patterns, symptom load and follow up 

patterns were studied in 95 patient data sets using the 

SPSS software to assess whether any factors 

determined time of referral. 

Results: Patients were referred from all oncology sub 

specialties after a multidisciplinary team consultation, 

56% from the pediatric solid tumor group. 

45% had metastasis at presentation to the primary 

oncology unit. Only 30% were referred to PPCS while 

they were on a disease modifying therapy. 

Symptoms were scored as follows- presence (1) or 

absence (0) of pain, fatigue, nausea, psychological 

distress, dyspnoea, anorexia, sleep disturbance, 

neurological dysfunction, loss of wellbeing Symptom 

load was determined by adding individual symptom 

scores(min 0 max 9). Median symptom score was 4 

(min 0 max 8). Pain (70%) and loss of wellbeing (75%) 

were most common. 

Median follow up duration was 39 days (mean 70 

days) including clinic (70%) home care (15%) or 

telephonically (55%). 

Simple Pearson’s correlation and linear regression 

tests were performed to assess any correlation 

between variables. Follow up duration correlated 

negatively with symptom load (r=-0.246; p=0.016) 

(F=6.006; p=0.016). Metastasis at presentation 

correlated positively with referral from Paediatric 

oncology units (r=0.269; p= 0.008) (F=7.246; 

p=0.008). There were no other significant 

correlations. 

Conclusion: Most PPCS referrals were based on 

intent to treat (palliative versus curative) rather than 

symptom load. This practice may lead to late referrals 

and inadequate symptom control. 




Exercise Programme for the Management of 

Cancer-related Fatigue in Palliative Care 

Patients. A Pilot, Randomised, Controlled 

Trial 

Pyszora A. 1 , Krajnik M. 1 , Prokop A. 1 

1 Nicolaus Copernicus University, Collegium 

Medicum, Bydgoszcz, Poland 

Research aims: Cancer-related fatigue (CRF) is a 

common and relevant symptom in palliative care 

patients, significantly decreasing patients’ quality of 

life (QOL). The management of CRF is difficult 

because it is not yet fully explained and it has a variety 

of causes. The aim of this pilot study was to evaluate 

the effect of exercise program, as an adjunct 

physiotherapy, on CRF. 

Study design and methods: The study was 

designed as a randomized controlled trial (RCT). 

Thirty advanced cancer patients receiving palliative 

care were randomly assigned to an exercise (n=15) or 

control (n=15) group. Fatigue was assessed by Brief 

Fatigue Inventory, pre and post a 2-week 

physiotherapy intervention. In addition, Handgrip 

Strength Test with the use of hydraulic dynamometer 

was performed in all the participants The exercise 

group trained three times a week. The program 

included: active, breathing and relaxation exercises. 

The controlled group did not exercise. 

Results: Exercise program caused global fatigue 

scores reduction (BFI) and it concerned both the 

severity of fatigue and the impact of fatigue on daily 

functioning. In the controlled group no significant 

changes in global fatigue scores (BFI) were observed. 

Moreover, in the exercise group the handgrip strength 

improved. None of the patients complained about 

their worse physical state due to the performed 

exercises. 

Conclusion: Physiotherapy program including: 

active, breathing and relaxation exercises, had 

beneficial effects on cancer-related fatigue in 

advanced cancer patients, who received palliative 

care. Therefore, it positively influenced their daily 

functioning. The results of the study suggest that 

physiotherapy treatment is a safe and effective 

method of CRF management. This pilot study gives 

the reasons for further randomized controlled trials 

assessing the effectiveness of physiotherapy in 

reducing cancer-related fatigue. 



How We Have Managed to Reach out to the 

Disadvantaged People who Need Palliative 

Care 

Sithole Z.M. 1 


Advocacy, Cape Town, South Africa 

Background: The HIV/AIDS pandemic has sharply 

increased the number of patients needing palliative 

care, which called for the national Hospice Palliative 

Care Association (HPCA) to strategise to meet this 

demand. This led to a strengthening of relationships 

between HPCA and relevant government and nongovernment 

organisations at local, provincial and 

national levels. 

Issues: Palliative care is an essential component of a 

comprehensive package of care for people living with 

HIV/AIDS because of the variety of symptoms they 

can experience. In communities the absence of 

palliative care places a needless burden on hospitals or 

other clinical resources. 

Research aims: One of the main activities is to 

sustain an on-going liaison with relevant government 

officials. Partnerships with state and nongovernmental 

organisations include the sharing of 

resources, capacity building, promotion of referrals 

and working with tertiary institutions to include 

palliative care in under and post-graduate training 

courses. 

Methods: To raise the awareness of palliative care the 

organisation has: 

· Influenced policy makers to promote access to 

palliative care by working with the Departments of 

Health, Correctional Services and Defence. 

· Identified and educated civil society partners to 

promote access to palliative care by working with the 

SA Nursing Council, traditional healers and Faith 

Based Organisations. 

· Influenced universities to include palliative care in 

their curricula and private health facilities to include 

palliative care in caring for patients. 

· Increased public awareness through Hospice Week 

and World Hospice and Palliative Care Day. 

Results: 

Increased awareness of the role of palliative care. 

An increase in the number of patients and families 

receiving palliative care. 

Increased referrals from public and private hospitals 

and NGOs. 

Conclusion: MOUs have been signed with 

department of health and other stake holders. 



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Abstract number: P1 

Abstract type: Poster 

Using Mobile Phone Technology to Assess 

Symptoms in Patients Receiving Palliative 

Care, the Advanced Symptom Management 

System (ASyMS©-P) 

Johnston B.M. 1 , Maguire R. 1 , Taylor A. 1 , Kearney N. 1 

1 University of Dundee, School of Nursing and 

Midwifery, Dundee, United Kingdom 

The use of telehealth can empower individuals 

experiencing life-limiting illnesses, and their carers, 

by facilitating the provision of real time 

communication between patients and health care 

providers. The ASyMS© system,developed by the 

authors, is an innovative, nurse-led initiative to 

improve patient outcomes and enable nurses to 

deliver high quality, evidence based, multiprofessional 

model of care. This study aimed to test 

the ASyMS© system for the management of 

symptoms in patients receiving palliative treatment at 

home and assess the feasibility and acceptability of 

the system within practice. 

Design & methods: The study followed a 

prospective design and incorporated a mixed 

methods approach, advocated for the evaluation of 

new technologies within healthcare. Phase 1; 

development of intervention literature review, focus 

groups; interviews with patients, carers and clinicians; 

Phase 2 ;development of assessment tool, risk alert 

system and self care advice; development of software, 

software into mobile phone; testing of system with 

patients and HCP’s in 2 areas of Scotland; to assess 

suitability of outcome measures for use in a future 

RCT, 4 standard outcome measures used; POS; Self 

care efficacy scale; state trait anxiety; FACIT-Pal. Data 

collected for 6 months. In one month of care, patients 

completed the symptom questionnaire using the 

mobile phone and the ´real time´ symptom 

information sent to the study server. The risk model 

identified symptom reports of concern. Patients 

completed outcome measures and perception 

questionnaire. Convenience sample of patients, 

HCP’s and carers interviewed. 

Results: Early results (complete Dec 2010) indicate 

ASyMS©-P is acceptable and useable to patients; 

symptom assessment is better controlled, patients 

report better communication with HCP´s. The 

symptom assessment tool in ASyMS©-P is reliable and 

valid; the alert system allows for early intervention. 

Patients and HCP’s valued content and delivery of self 

care advice. 



Validation of a Four Item Fatigue Screen (FIFS) 

in Cancer-Related Fatigue (CRF) 

Davis M.P. 1 , Seyidova-Khoshknabi D. 1 , Walsh D. 1 , 

Lagman R. 1 , Karafa M.T. 2 , Aktas A. 1 , Hauser K. 1 

1 Cleveland Clinic Taussig Cancer Institute, 

Department of Solid Tumor Oncology, Harry R. 

Horvitz Center for Palliative Medicine and Supportive 

Oncology, Cleveland, OH, United States, 2 Cleveland 

Clinic Lerner Research Institute, Department of 

Quantitative Health Sciences, Cleveland, OH, United 

States 

Background: Questionnaires for CRF are long & 

burdensome. A FIFS questionnaire was tested for the 

ability to stand in for Brief Fatigue Inventory (BFI) & 

capture changes in fatigue along with ICD10 criteria. 

Methods: Cancer patients completed BFI & FIFS in 

random order. FIFS included 4 questions: 

1. Do you have fatigue (weariness, tiredness): never, 

sometimes, usually, or always 

2. On a scale of 0-10 (0: no fatigue 10: severe fatigue) 

how would you rate your fatigue (weariness, 

tiredness) now 

3. What is the level of your fatigue (weariness, 

tiredness) now: none, mild, moderate, severe 

4. Is your fatigue (weariness, tiredness) over the last 

day: worse, the same, better ICD10 criteria were 

completed by investigators. 

1 week later, both tools were completed in opposite 

order. 65 patients were needed for 80% power for 

Pearson’s correlation of 0.7. Bonferroni corrections 

were made for multiple variables; p < 0.0035 was 

significant. 

Results: 65 completed ICD-10, BFI & FIFS day 1 & 7. 

Spearman correlation between FIFS & BFI was 0.7 

(0.52-0.88) day 1, 0.73 (0.55-0.91) day 7, 0.59 (0.38- 

0.80) for change over time. BFI score correlated with 

ICD10-1, 3, 7, 10B. Regression analysis showed BFI on 

day 7 correlated with ICD10-1, ICD10-7 & ICD10-10 

(p=0.024, 0.026, 0.045 respectively), these disappear 

when adjusted for BFI on day 1 (p=0.10, 0.99, 0.12 

respectively). For changes in BFI from day 1 to 7, only 

ICD10-5 criteria is significant (p=0.019) & drops out 

of the model when adjusting for day 1 BFI. For FIFS, 

ICD10-7 (p=0.003) & ICD10-10 (p=0.04) were 

significant & persists after adjustment for baseline 

FIFS score. Several ICD10 factors were heavily 

represented in this cohort (A, 1, 3, 8, B, C). FIFS & BFI 

correlated well in time & modestly over time. FIFS 

substituted for BFI. Certain ICD10 items better 

correlated with fatigue severity. 

Conclusions: FIFS is valid for CRF. Certain ICD-10 

items better predict fatigue severity. ICD-10 criteria 

need further validation. 



An Examination of Verbal Descriptors in 

Cancer Induced Bone Pain 

Todd A.M. 1 , McHugh G.S. 2 , Smith L.N. 3 , Colvin L.A. 4 , 

Fallon M.T. 5 , Laird B.J.A. 6 

1 University of Edinburgh, Palliative Medicine 

Research, Glasgow, United Kingdom, 2 University of 

Edinburgh, Medical School, Centre for Population 

Health Services, Edinburgh, United Kingdom, 

3 University of Glasgow, Faculty of Medicine, Nursing 

and Healthcare, Glasgow, United Kingdom, 4 Western 

General Hospital Edinburgh, Department of 

Anaesthesia, Critical Care & Pain Medicine, 

Edinburgh, United Kingdom, 5 University of 

Edinburgh, St Columba’s Hospice Chair of Palliative 

Medicine, Edinburgh, United Kingdom, 6 European 

Palliative Care Research Centre, NTNU, Clinician 

Scientist, Edinburgh, United Kingdom 

Background: Cancer Induced Bone Pain (CIBP) is a 

common cause of pain in cancer but the clinical 

diagnosis can be challenging. Traditional textbook 

teaching is that patients use particular words to 

describe CIBP such as dull or aching; however the 

verbal descriptors of CIBP have not been examined in 

a robust, systematic fashion. Accurate verbal 

descriptors may assist in the diagnosis of CIBP. The 

aim of this study is to examine verbal descriptors of 

CIBP. 

Patients and methods: A secondary analysis of 

data from two studies in CIBP. Patients had 

radiological proven bone metastases and pain at the 

corresponding site. Patients completed the McGill 

Pain Questionnaire (MPQ) and the Brief Pain 

Inventory (BPI). 

Results: Data were available on 120 patients; 61 

(50.8%) female, mean age of 63.7years (SD 12.2). 

Words from the “dullness” section of the MPQ (dull, 

sore, hurting, aching and heavy) were the most 

commonly reported; 84 (70%) patients. Patients with 

higher mean BPI scores (19 patients, mean BPI 71.6 

(SD 18.8)) tended to use descriptors from the fear 

section (fearful, frightful or terrifying) of the MPQ. 

Patients with lower mean BPI scores (25 patients, 

mean BPI 53.3 (SD 23.2)) tended to use descriptors 

from the thermal section (hot, burning, scalding or 

searing) of the MPQ. 

Conclusion: Particular descriptors (dull, sore, 

hurting, aching and heavy) are associated with CIBP. 

Patients with higher pain scores also use specific 

words (fearful, frightful or terrifying). Prospective 

studies examining descriptors of CIBP would be an 

important next step. This may allow the development 

of a comprehensive assessment tool for CIBP. 



The VOICES-SF: A New Questionnaire to 

Measure Bereaved Family Members’ 

Experience of Palliative and End of Life Care 

Hunt K. 1 , Addington-Hall J. 1 , Cancer, Palliative and End of 

Life Care Research Group 



Aims: In 2008, the Department of Health End of Life 

Care Strategy in England and Wales specified the 

development and implementation of a national 

programme of surveys of bereaved relatives as a key 

priority in relation to the development of quality and 

outcome measures. The VOICES questionnaires, first 

developed by Addington-Hall in 1995, have been 

adopted for this programme because of the evidence 

that they are provide a valid and reliable method to 

collect information on the quality of palliative and 

end of life care. The aim of this presentation is to 

report on the first component of the pilot study for 

this programme, which aimed to modify the existing 

VOICES questionnaires to make them suitable for 

their task of measuring the quality of service provision 

across care settings in the UK from the perspective of 

bereaved relatives, as well as assessing the support and 

care provided to bereaved relatives themselves before 

and after bereavement. 

Methods and results: Statistical analysis was 

undertaken on existing VOICEs databases to identify 

redundancy between questions. Discussions were 

held with palliative care user groups, NHS 

stakeholders, the DH VOICES Steering Group and 

specialist palliative care practitioners to determine 

content priorities, and ensure match with the DH EOL 

Strategy. Rigorous attention to the principle that 

question responses should be able to lead to action 

enabled a reduction from 100+ questions to 50. 

VOICES-SF was then used in a pilot survey of 1446 

deaths in Southern England (including, for the first 

time, on-line completion as an option). Cognitive 

interviews were conducted with 20 respondents. 

VOICES-SF was further revised following these 

interviews, and questionnaire analysis. 

Conclusions: VOICES-SF provides a useful measure 

of the quality of service provision at the end of life 

across care settings from the perspective of bereaved 

relatives. Advice on its use will be provided. 

Funder: The Department of Health. 



The Development and Introduction of Two 

Outcome Measures Specifically Designed for 

Use in Palliative Care Services 

Sykes N.P. 1 , Addington-Hall J. 2 , Rosanna H. 1 , Monroe B. 1 

1 St Christophers Hospice, London, United Kingdom, 

2 Southampton University, Faculty of Health Sciences, 

Southampton, United Kingdom 

Aim: Valid, reliable measurement of the outcomes 

achieved by palliative care for patients and bereaved 

relatives is challenging. Partly this is because many 

palliative care patients are too ill to cope with existing 

questionnaires. Another factor is Response Shift, 

which makes it difficult to demonstrate whether a 

move to a palliative care setting has changed the 

quality of symptom control and wellbeing. 

Action: Our service has developed two outcome 

measures specifically for use in a palliative care 

setting, either in-patient or community-based. The 

first of these (SKIPP) is a new 11 question instrument 

for use with patients. It assesses a small number of key 

palliative care outcomes and uses the principles of 

patient-generated quality of life measurement. SKIPP 

is not a measure of an underlying concept of ‘quality 

of life’ or a comprehensive inventory of palliative care 

outcomes, but is designed to detect whether and how 

the service is impacting on the lives of patients 

receiving its care, from their perspective, as from a 

single use it compares patient-identified concerns at 

two time points. The second scale is an adaptation of 

the established VOICES questionnaire, for use with 

bereaved relatives. 

Results: SKIPP was tested twice on samples of 

hospice in-patients and community services. It was 

acceptable to patients and detected change over time, 

unlike an existing scale administered alongside it. 

Conclusion: The combination of SKIPP and VOICES 

provides for the first time a validated, sensitive 

method of assessing patient and carer outcomes in 

palliative care and demonstrating the contribution 

that a service has made to the wellbeing of both these 

groups. They have been accepted as quality measures 

for the hospice by its Health Service Commissioners 

and are incorporated in the service’s electronic patient 

record. It is hoped that in time other organisations 

delivering end of life care will adopt these tools, 

offering opportunities for benchmarking. 



Use of Outcome Measures in Palliative Care in 

Africa: Results of an Online Survey 

Downing J. 1 , Simon S. 2 , Mwangi-Powell F. 3 , Benalia H. 4 , 

Higginson I. 4 , Harding R. 1 , Bausewein C. 4 , on behalf of 

Project PRISMA 

1 Formerly African Palliative Care Association, 

Kampala, Uganda, 2 Zentrum fuer Palliativmedizin, 

Universität Köln, Koln, Germany, 3 African Palliative 

Care Association, Kampala, Uganda, 4 Kings College 

London, Department of Palliative Care, Policy & 



Background: Measurement of effects & outcomes of 

end-of-life care (eolc) on patients & families is key to 

high quality care & research. Yet little is known about 

the experience of professionals using outcome 

measures (OM) in Africa where eolc research is underdeveloped 

& under-resourced. Therefore within the 

PRISMA project, an online survey was undertaken of 

those using OM in Africa. 

Study design & methods: A questionnaire was 

developed for a similar survey in Europe addressing 

the use of OM, & adapted for Africa. Invitation emails 

were sent out in Jan 2010 with a reminder in Feb 

2010. Participants were sampled through the APCA 

contacts database. 

Results: 168/422 invited contacts (40%) from 24 

countries responded, with 78% of respondents having 

used OM in clinical practice (65%), research (12%) or 

both (23%). Main reasons for not using OM were a 

lack of guidance/ training on using & analyzing OM, 

with 49% saying that they would use them if this was 

given. 40% of those using OM in clinical practice used 

the POS, & 80% used them to assess, evaluate & 

monitor change. The POS was the main tool used in 

research with the main criteria for use being whether 

it was validated in Africa, access to the tool & 

completion time. Challenges to the use of tools are 

shortage of time & resources, lack of guidance & 

training for the professionals, poor health status of 

patients & complexity of OM. Researchers also have 

problems analyzing the data of OM. The APCA 

African POS was seen to be a valuable tool for 

measuring outcomes. 

Conclusion: This was the first survey on 

professionals views on OM in Africa. It showed that a 

variety of tools are used, with the APCA African POS 

being the most frequent one. Training & support are 

needed to help professionals utilise OM in palliative 

care, however, it is clear that they have an ongoing & 

important role in palliative care in Africa. 



The Conceptual Content of Spiritual Measures 

Validated Cross-culturally in Palliative Care: 

A Model to Guide Research and Practice 

Selman L. 1 , Harding R. 1 , Speck P. 1 , Gysels M. 2 , Higginson 

I.J. 1 


Rehabilitation, London, United Kingdom, 2 University 

of Barcelona, Barcelona Centre for International 

Health Research (CRESIB), Barcelona, Spain 

Aims: To explore the concepts used to measure 

spiritual outcomes in tools validated in cross-cultural 

palliative care populations, in order to inform 

outcome measurement in this area. 

Design: Systematic review to identify spiritual 

measures validated in cross-cultural palliative care 

populations, followed by qualitative content analysis 

of identified tools. 

Methods: 8 databases were searched to identify 

relevant validation and research studies, using search 

terms in 3 categories: palliative care, spirituality, 

outcome measurement. Included tools were those 

validated in ethnically diverse advanced cancer, HIV 

or palliative care populations. 2 researchers 

independently carried out the content analysis, 

constructing and applying a thematic coding frame to 

the spiritual items in the tools before meeting to agree 

findings. 

Results: 26 tools (representing 4 families of measures 

(WHOQOL-HIV, POS, MVQOLI and MQOL) and 5 

individual tools) were identified. Tools used 35 

spiritual concepts relating to 6 themes: Beliefs, 

practices and experiences; Relationships; Spiritual 

resources; Outlook on life/ self; Outlook on death/ 

dying; and Indicators of spiritual wellbeing. The most 

prevalent concepts identified were: outlook on life, 

the future or the world (n=8 tools); meaning/ the 

search for meaning (n=7); connection to others (n=6); 

purpose/ ‘why I am here’ (n=5); feeling at peace/ at 

peace with God (n=5); life worth/ value (n=4); 

connection to God, spirit or supernatural being (n=4). 

A conceptual model of spirituality is presented on the 

basis of the content analysis. 

Conclusion: While the identified tools measure 

diverse spiritual constructs, a number of concepts 

occurred in several tools (e.g. outlook on life, the 

future or the world, meaning or the search for 

meaning, and connection to others). These concepts 

and the conceptual model developed may be relevant 

in the measurement of spiritual aspects of the 

experience of progressive, incurable illness crossculturally. 



Building Community-centred Care: 

Examination of a Palliative Care Network in 

Ontario, Canada 

Bainbridge D. 1 , Kevin B. 1 , Paul K. 2 , Ploeg J. 3 , Taniguchi 

A. 4 , Darnay J. 5 , Marshall D. 4 

1 McMaster University, Department of Clinical 

Epidemiology & Biostatistics, Hamilton, ON, Canada, 

2 University of Toronto, Department of Family & 

Community Medicine, Toronto, ON, Canada, 

3 McMaster University, School of Nursing, Hamilton, 

ON, Canada, 4 McMaster University, Department of 

Family Medicine, Division of Palliative Care, 

Hamilton, ON, Canada, 5 Hamilton, Brant, Haldimand 

and Niagara Hospice Palliative Care Network, 

Grimsby, ON, Canada 

Background: In Ontario, a palliative care network 

(PCN) has been developed in each healthcare region 

to create palliative care (PC) systems that are more 

cost-effective and responsive. However, organizing 

care across these large areas tends to marginalize 

smaller communities. We examined a PCN that used 

the Community Readiness model to identify and 

build capacity for PC in each distinct community in 

the region, with the goal of achieving an optimal 

integrated system. 

Method: We evaluated the PCN at structural 

(administration) and process (health care provider) 

levels using a theory-based approach. Validated 

survey instruments were used to capture 

administrator and provider perspectives for evidence 

of inter-professional collaboration and other 

indicators of quality PC. In-depth data collection also 

involved document review and interviews with the 

network executive and a subgroup of PC providers. 

Results: Data were collected from 80 providers and 

20 administrators. The PCN has identified natural 

community boundaries, revealing 14 distinct 

communities at different stages of development 

within the region. Despite some key features to 

efficient PC delivery lacking across the region, i.e., 

common assessment tools, our findings at process and 

structural levels were generally favourable. Relative to 

processes, we found that collaboration is valued by 

the providers, important to creating an integrated 

system of quality PC. At the structure level, 

administrators largely viewed the accomplishments of 

the PCN positively. Additional efforts were seen as 

required in ensuring the identification of patients 

requiring palliative care and support from regional 

authorities. 

Conclusions: The study PCN has taken a 

community development approach to recognize 

specific needs in each local area. Change is gradual 

but participatory. The impact on administrators and 

providers has been positive. Some issues remain that 

may negatively affect PCN functioning, thus require 

further consideration. 



“Palliative Prognostic Score, PPS”, an Useful 

Tool in Clinical Practice? 

Roca R. 1 , Virgili A. 1 , Herrero A. 1 , Llorá M. 1 , Massanet G. 1 , 

Mas de Xaxars A. 1 , Pons D. 1 , Rodriguez E. 1 , Gabarda X. 1 , 

Marcó C. 1 , Gallegos D. 1 , Aguado E. 1 , Babiá C. 1 , Condom 

M.J. 1 , Alemany C. 1 , Saviñón B. 1 

1Sta. Caterina’s Hospital, Palliative Care Unit, Girona, 

Spain 

Aims: To evaluate PPS (practical) usefulness in 

improving clinical prognosis. PPS: 30 days predictive 

survival tool, which evaluates subjective and objective 

aspects. Sample: Palliative care unit patients with 

advanced cancer. 

Methodology: Prospective, observational study. 

Consecutive sample of patients with advanced cancer 

admitted to Palliative care unit from May to 

September 2009. PPS was determined on the first day 

of the latest admission. Haematological cancer 

patients were excluded.Variables: age, gender, tumour 

site (divided in two groups, with or without astheniaanorexia 

syndrome).Tool: PPS: Including Karnofsky 

Performance Status, KPS, symptoms (anorexia, 

dyspnoea), haematological parameters (total 

leucocytes, % lymphocytes), and clinical assessment 

by the clinician. The score obtained was distributed in 

3 subgroups according to the 30-day survival 

prognosis (%): A-0-5.5=>70%, B-5.6-11=30-70%, C- 

11.1-17.5= < 30%. Statistics: Positive predictive value 

VPP, which determines prognosis accuracy PPS, 

Kaplan-Meier log-rank test to compare subgroups and 



Cox proportional hazards model. 

Results: 80 evaluated/assessed patients (34 of them 

with asthenia-anorexia syndrome). Mean age 70.2 

years (SD-13.6, range 24-97), of whom 65% were men. 

Subgroup distribution according to the PPS score: A- 

24(30%), B-34(42.5%), C-22 (27.5%). Mean overall 

survival 14 days, survival per subgroup: A-48 d., B-15 

d., C-14 d. VPP subgroup A-70.8%(CI95%=50,6-91,1), 

subgroup B-23,5%(CI95%=7,8-39,3) and subgroup C- 

4,5%(CI95%=0,0-15%). Age, gender and tumour site 

were excluded from the analysis. The only significant 

variable was inclusion in one of the three subgroups 

as per the PPS mark. Risk estimation: 3,6 (CI 96%=1,5- 

8,4) of B versus A and 11,0 (CI 95%=4,4-27,4) of C 

versus A. 

Conclusions: PPS is an easy and useful tool to 

improve clinical prognostic assess. The results 

confirm the hypothesis of this study. 



What is the Methodological Rigour in 

Palliative Care and End-of-Life Care Research 

in Long-term Care Facilities in Europe: A 


Albers G. 1 , Harding R. 2 , Pasman H.R.W. 1 , Onwuteaka- 

Philipsen B.D. 1 , Hall S. 2 , Toscani F. 3 , Ribbe M.W. 4 , 

Deliens L. 1 , On behalf of PRISMA 

1 VU Universtity Medical Center, EMGO Institute for 

Health and Care Research, Department of Public and 



Department of Palliative Care, Policy and 

Rehabilitation, London, United Kingdom, 3 Lino 

Maestroni Foundation Palliative Medicine Research 

Institute, Cremona, Italy, 4 VU University Medical 

Center, EMGO Institute for Health and Care Research, 

Department of Nursing Home Medicine, Amsterdam, 

Netherlands 

Aim: The aim of this study was to systematically 

review the literature on palliative care and end-of-life 

care research in long-term care facilities in Europe 

with respect to how the palliative or end-of-life care 

populations were described, and to determine what 

study designs and patient outcome measures were 

utilised. 

Methods: We conducted a systematic literature 

review. We searched PubMed, Embase and 

PsychINFO from 2000 up to May 2010 using search 

terms related to ‘palliative care’ and ‘end-of-life care’ 

combined with search terms related to ‘long-term 

care’. We selected articles that present studies on 

patient outcome data of palliative care or end-of-life 

care populations residing in a long-term care facility 

in Europe. 

Results: This study showed that there are only a few, 

and mainly descriptive, European studies on palliative 

care and end-of-life care research in long-term care 

facilities. Fourteen studies were included in the 

review. None of the studies described their study 

population specifically as a palliative care population 

or end-of-life care population. Retrospective and 

prospective designs were used, and many different 

measurement instruments. Most instruments were 

used as proxy ratings. Symptom (management) was 

the most frequently measured outcome. There is a 

lack of consensus on the definition of the palliative 

care population in long-term care facilities, which 

might have affected the findings of this study. This is 

due to the fact that not all studies on a population 

residing in a long-term care facility were described as a 

palliative care or terminal population and, were 

consequently not found by our search strategy. 

Conclusion: Agreement on the definition of the 

palliative care population in long-term care facilities 

and, well developed and tested measurement 

instruments are needed to improve future research in 

this field and to further develop and improve 

palliative care in long-term care facilities. 



Objective and Subjective Measures of 

Cognitive Function in Patients who Are 

Prescribed Opioids 

Isherwood R.J. 1 , Allan G. 2 , Joshi M. 3 , Colvin L. 3,4 , Fallon 

M. 4,5 

1 Beatson Oncology Centre, Palliative Medicine 

Research Team, Glasgow, United Kingdom, 

2 Strathcarron Hospice, Denny, United Kingdom, 

3 Western General Hospital Edinburgh, Department of 

Anaesthesia and Pain Medicine, Edinburgh, United 

73 


(Thursday)


(Thursday) 


Kingdom, 4 University of Edinburgh, Edinburgh, 

United Kingdom, 5 Institute of Genetics and Molecular 

Medicine, Edinburgh, United Kingdom 

Research aims: The study assesses the prevalence 

and severity of side effects of strong opioids. Patients 

are recruited who have a history of cancer or noncancer 

pain or substance misuse. 

Study design and methods: An observational 

study that recruits patients who are prescribed strong 

opioids. Patients are assessed using a series of 

validated tools over a period of months. Cognitive 

function is measured objectively using a 100-point 

scale, which has been validated for diagnosing 

dementia. Five domains of cognitive function are 

assessed - attention and orientation, memory, 

fluency, language and visuospatial scores are 

obtained. A subjective measure of cognitive function 

is provided using 16 visual analogue scales which are 

anchored by the positive and negative aspects of an 

emotion (for example alert to drowsy). 

Results: 50 patients have completed initial 

assessment (48 completed the objective assessment of 

cognitive function); 20 of these have completed 

follow-up. 54% are female. Mean age is 54.7 years 

(range 36 - 78). The majority (44) have cancer-related 

pain. Patients have significant impairment of 

cognitive function with 52% of patients scoring less 

than 88/100. (This score gives 94% sensitivity and 

89% specificity for dementia). Memory and fluency 

are the domains most affected. Possible associations 

between the total morphine equivalent daily dose, 

opioid prescribed and rate of titration of the opioid 

are explored. Possible confounding issues of social 

class (based on occupation), anxiety and depression 

and presence of brain metastases are included. 

Subjective assessment of cognitive function suggests 

patients are very aware of the impairment. 

Detailed statistics will be presented. 

Conclusion: Results show a significant impact on 

cognitive function. Patients reported an awareness of 

their cognitive impairment and it appears this is 

clinically significant. 



Methodology to Help Collegial Decisionmaking: 

Experience after 10 Years Using the 

DDE (Décision après Démarche Ethique ã: 

Decision after Ethical Approach) 

Gomas J.-M. 1 , Petrognani A. 2 , Sales E. 2 , Nectoux M. 3 

1 Hôpital Sainte-Perine, Palliative Care, Paris, France, 

2 Hôpital Sainte-Perine, Paris, France, 3 Observatoire de 

la Fin de Vie, Paris, France 

Introduction: The Décision après Démarche 

Ethique (DDE ã : decision after ethical approach) has 

been published in 2001. It is the first French-speaking 

structured methodology to help decision-making in 

cases of conflicting values. The DDE draws on the 

works by the founders of the palliative care 

movement and by the pioneers of clinical ethical 

medicine. It is a practical tool used in healthcare units, 

in acute pain services or in geriatrics in cases of ethical 

conflicts or of collegial decision-making procedures. 

Method: Interviews have been conducted with 17 

professionals who use the DDE. The interviews have 

been associated with a retrospective analysis of 50 

decisions made, documented in files and indicating 

the help brought by the DDE 

Results and discussion: The DDE is a methodology 

help: it categorizes and prioritizes questions, it 

organizes the evolution, it forces to devote time to it 

and to have a genuine discussion, it encourages to 

work in interdisciplinary ways. The number of new 

decisions that were not planned but adopted in the 

end (15%) and the number of decisions made in 

disagreement with the team head (15%) show the 

relevancy and the efficiency of the DDE. 

But this study shows that the DDE poses a problem for 

teams which have not integrated a “real teamfunctioning”: 

when there is a lack of listening and of 

mutual respect, or when the decision ends up being 

the decision of one single doctor on its own, the DDE 

can even become a pretence for team work. Moreover, 

the existence of conflicting values is not always 

spotted as doctors and medical staff refuse obstinately 

and unreasonably to miscommunicate. 

This tool does not calculate figures (unlike scales). 

Conclusion: The DDE is one of the rare published, 

practical, field-adapted tools, that offers a collegial 

decision-making methodology, including in cases of 

conflicting values. Yet this “doctor-medical staff” 

decision will remain unique, patient-oriented. 



Validation the German Version of the SAHD 

Galushko M. 1 , Walisko-Waniek J. 1 , Strupp J. 1 , Ernstmann 

N. 2 , Pfaff H. 2 , Ostgathe C. 3 , Voltz R. 1,4,5 


Palliative Medicine, Köln, Germany, 2 Department of 

Medical Sociology and Rehabilitation Sciences, 

Cologne, Germany, 3 University Hospital Erlangen, 

Division of Palliative Medicine, Erlangen, Germany, 

4 University Hospital Cologne, Center for Integrated 

Oncology (CIO), Köln/ Bonn, Germany, 5 University 

Hospital Cologne, Center for Clinical Studies, Köln, 

Germany 

Background: So far no German instrument exists to 

measure the desire for hastened death (DHD). 

Therefore the aim of this study was to validate the 

German version of the Schedule of Attitudes towards 

Hastened Death (SAHD-D). 

Methods: The SAHD was translated following 

EORTC guidelines. In eligible patients (physician´s 

view; MMST ≥ 21), the following instruments were 

used: Core data set including a symptom checklist 

(HOPE), HADS-D (Hospital Anxiety and Depression 

Scale), EORTC-QLQ-PAL15, SAHD-D as well as an 

external estimation of the DHD by the attending 

physician. A high level of DhD was defined as mean 

plus 1 SD. During the interviews field notes were 

taken and analyzed. 

Results: Of 869 admitted 92 patients could be 

included, 61 females (66%), age 40-86, mean 65. The 

SAHD-D sum score ranged 0-18, mean 5, SD 3.7. A 

high level of DhD was found in 20% (N=19). For 

discriminant validity the correlations between the 

SAHD-D and depression (r Rho =0,472***), anxiety 

(r Rho =0,224**) and clinical state (r Rho =0,178*) were low 

to moderate and significant. 

Correlations with the 9 EORTC-QLQ-PAL15 subscales 

were low (0,06 to 0,31) and significant for 5 subscales. 

For criterion validity the external estimation of the 

DHD showed a low significant correlation 

(r Rho =0,290*). 

The factor analysis of the SAHD-D identified 2 factors. 

The field notes show that patients need a 

differentiation of the SAHD items to know whether 

they refer to their general attitude, actual wishes or 

future options. 

Discussion: The validation of the SAHD-D illustrates 

good discriminant validity, demonstrating that 

depression, anxiety, physical state and DhD are 

separate constructs. The unidimensionality of the 

SAHD could not be reproduced. The criterion validity 

is insufficient. The field notes suggest the DHD can 

have different dimensions: actual wishes, general 

attitudes or options. Differences to previous studies 

may be due cultural background. A further 

differentiation of the SAHD could be also considered. 



Physician’s Intended Level of Palliative 

Sedation: Comparison with Validated 

Measurement Instruments 

Brinkkemper T. 1 , Gootjes J.R. 2 , Stam E. 3 , Swart S. 4 , Deliens 

L. 5,6 , Ribbe M. 6,7 , Zuurmond W.W. 2,6,8 , Perez R.S. 2,6,9 

1 VU University Medical Center and EMGO Institute 

for Health and Care Research, Amsterdam, 

Netherlands, 2 Hospice Kuria, Amsterdam, 

Netherlands, 3 Hospice Alkmaar, Alkmaar, 

Netherlands, 4 Erasmus MC, University Medical 

Center Rotterdam, Public Health, Rotterdam, 

Netherlands, 5 VU University Medical Center, EMGO 

Institute for Health and Care Research, Public and 


6 Center of Expertise Palliative Care, Amsterdam, 


Institute for Health and Care Research, Nursing Home 

Medicine, Amsterdam, Netherlands, 8 VU University 

Medical Center Amsterdam, Anesthesiology, 

Amsterdam, Netherlands, 9 VU University Medical 

Center and EMGO Institute for Health and Care 

Research, Anesthesiology, Amsterdam, Netherlands 

Research aims: Palliative sedation is used to 

alleviate unbearable refractory symptoms at the end 

of life, whereby different levels of sedation depth can 

be considered to achieve the required symptom relief. 

However, this proportional application of palliative 

sedation is difficult in practice. The aim of the present 

study is to compare intended levels of sedation depth 

prior to the start of sedation to outcomes of 

observation scales used for assessing depth of sedation 

validated in an intensive care unit setting. 

Methods: For twenty-eight terminally ill patients, 

intended sedation depth (categorized as somnolent, 

sopor, sub-comatose, comatose) was compared to 

values of the Minnesota Sedation Assessment Tool 

(MSAT), the Vancouver Interaction and Calmness 

Scale (VICS) and the Richmond Assessment and 

Sedation Scale (RASS) administered within one hour 

after start of sedation. Spearman’s correlation 

coefficient, Kruskal-Wallis and Mann-Whitney tests 

were used to analyse relationships between 

assessments. 

Results: No significant correlations were found 

between intended levels of sedation depth and 

sedation levels as assessed by observation scales 

(Spearman p-range 0.628-0.054). Overall, no 

significant differences were found between 

observation scale scores categorized according to 

intended sedation depth (Kruskall-Wallis p-range 

0.103-0.873). Further sub-categorisation revealed a 

significant difference in the expected direction 

between intended sedation depth categorised as 

somnolent, and deeper levels of intended sedation on 

the VICS-interaction subscale (Mann-Whitney 

p=0.033). 

Conclusion: Overall, intended level of palliative 

sedation depth did not correspond with levels of 

sedation as measured with validated observation 

scales, illustrating the difficulty of titrated 

administration of palliative sedation. We argue that 

administration of sedation under direct guidance by 

measurement instruments could be used to improve 

proportional application of palliative sedation. 



Measuring Comfort at the End of Life - 

Validation of Hospice Comfort Questionnaire 

Querido A. 1,2 , Marques R. 2,3 , Coelho Rodrigues Dixe 

M.D.A. 4 

1 Instituto Politécnico de Leiria, Escola Superior de 

Saúde, Leiria, Portugal, 2 Portuguese Catholic 

University, Lisboa, Portugal, 3 Hospital de Pulido 

Valente, Lisboa, Portugal, 4 School of Health Sciences 

Polytechnic Institute of Leiria, Health Research Unit, 

Leiria, Portugal 

Introduction: Comfort in one of the main goals of 

patients’ care at the end-of-life. More than the 

absence of pain, it has multidimensional interrelated 

properties. Comfort is an immediate experience of 

being strengthened by having the needs for relive, 

ease and transcendence met in -physical, psycho 

spiritual, social and environmental contexts (Kolcaba, 

2003). 

Aims: To analyze the psychometric properties of a 

Portuguese version of Hospice Comfort 

Questionnaire. 

Design/methods: Hospice Comfort Questionnaire 

is a 49 item, self report multidimensional scale 

measure to assess comfort in palliative patients. A 

methodological study was conducted to adapt and 

validate a Portuguese version (HCQ - PT). Steps 

included translation, back-translation, and inspection 

for lexical equivalence, content validity and cognitive 

debriefing. Reliability and Discriminant Validity was 

accessed. 

HCQ - PT consists of 3 subscales measuring types of 

comfort: relief, ease, transcendence. We applied it to a 

convenience sample of 126 patients, 57,1%males, 

mean age of 66,97 years (SD=11,90) assisted by 

Portuguese palliative care teams for a mean of 18,44 

weeks (SD=34,88). 

Results: After analysing the homogeneity of the 

items, 14 items were removed from the original scale. 

HCQ - PT remained a 35 item multidimensional scale. 

Internal consistency of each of the 3 dimensions was 

tested by Cronbach´s ń, showing reasonable 

reliability: Relief (.795); Ease (.797); Transcendence 

(.743). 

All items satisfy average inter-item Pearson correlation 

≥.20 showing convergent validity. 

Regarding discriminant validity most items meet the 

criteria for staying the subscale to which they belong. 

We also assessed the subscales correlations. All 

correlations were less than .85 (. 740 to .767) 

Conclusion: The scale structure is relevant, reliable, 

and its use is an opportunity to access palliative 

patients’ comfort and develop knowledge towards 

comfort as an outcome. 




Health Care Professionals’ Use and 

Perceptions of the Utility of a Standardized 

Symptom Assessment System for Oncology 

Patients 

Bainbridge D. 1 , Seow H. 2 , Martelli-Reid L. 3 , Pond G. 2 , 

Sussman J. 2,3 

1 McMaster University, Department of Clinical 

Epidemiology & Biostatistics, Hamilton, ON, Canada, 

2 McMaster University, Department of Oncology, 

Hamilton, ON, Canada, 3 Juravinski Cancer Centre, 

Hamilton, ON, Canada 

Purpose: Patients struggle with the physical and 

emotional pain caused by advanced cancer 

symptoms. The Edmonton Symptom Assessment 

System (ESAS) is a validated measure of symptom 

burden in palliative care that has been adopted by 

Ontario’s cancer centres to assess symptoms for 

cancer patients. This study examined the perceived 

value and barriers of ESAS among clinical teams 

towards improving patient care and the relationship 

between ESAS scores and documented clinical 

actions. 

Methods: Self-completed surveys were administered 

online to clinical teams at a large cancer centre in 

Ontario, Canada and a chart audit was completed of a 

random sample of breast and lung cancer patients 

seen in clinic (26% / 80% with advanced disease, 

respectively), stratified by four ESAS score groups each 

for pain and dyspnea. 

Results: A total of 130 nurses, oncology physicians, 

and allied health professions completed the survey. 

The majority of nurse (89%), physician (55%), and 

other (57%) providers reported referring to ESAS in 

clinic either “always” or “most of the time”. Many of 

those who either “never” or “rarely” looked at ESAS 

scores reported finding it more efficient to talk to the 

patient or do their own assessment to determine 

symptom issues. The chart audit captured clinical 

activities from 912 visits (372 breast / 276 lung cancer 

patients). A statistically significant relationship 

between higher ESAS symptom scores and resulting 

relevant actions was found for both pain and 

dyspnea. 

Conclusions: Most providers reported using the 

ESAS in clinical visits to some extent; however, 

variable uptake indicated by physicians may limit 

ESAS’ potential to improve comprehensive symptom 

control. Despite this, we found a positive relationship 

between patient reported scores and clinical actions 

suggesting appropriate symptom management 

following assessment. To encourage consistent 

uptake, a symptom assessment system needs to be 

complementary to the perceived roles of all team 

members. 



To Whom Shouldn’t We Propose Palliative 

Whole Brain Radiotherapy in Lung Cancer? 

Van de Velde F. 1 , Basset P. 2 

1 Centre Hospitalier Général, Pneumologie-Médecine 

Interne, Aix-les-Bains, France, 2 Centre Hospitalier 

Général, Unité de Soins Palliatifs, Chambéry, France 

Aims: Whole brain radiotherapy (WBRT) is a 

standard treatment for brain metastasis from lung 

cancer, with a proved effect on survival. Patients with 

low performance status can dye shortly after 

treatment, with no demonstrated benefice on quality 

of life. Prognostic factors and indexes are available, 

but not sufficient to decide which patients should not 

undergo WBRT. We will try to identify those patients, 

to understand why they are still selected for WBRT 

and try to improve the decision process. 

Method: We conducted a retrospective study on 34 

patients with lung cancer and brain metastasis, 

hospitalised from 2006 to 2010. Survival, main 

prognostic factors and 4 prognostic indexes 

(Recursing Partitioning Analysis, Graded Prognostic 

Assessment-GPA, Basic Score for Brain Metastases and 

Rades) were collected. We studied the mention of 

performance status scores in the medical letters. 

Results: Median age of the 26 patients with WBRT 

indication was 66, median ECOG (Eastern 

Cooperative Oncology Group) index was 2 and 

Karnofsky 60%. 23 patients underwent the treatment, 

3 patients died during treatment. Median survival 

after treatment was 81 days. 35% of treated patients 

died less than 1 month after treatment. ECOG 3 

patients died before, during, or less than 8 days after 

WBRT. 7% of the medical letters mentioned a 

performance status score. 

Discussion: We stress the gap between prognostic 

estimation and objective results. Prognostic scores 

seem to be relevant in the decision making process. 

Patients both ECOG 2 and in 4th group of GPA 

should probably not be selected for WBRT. Improving 

decision process implies better evaluation of patients, 

using performance status scales and prognostic scores 

like GPA. Communication between radiotherapy and 

thoracic oncologists is to improve. A Pluridisciplinary 

approach must be enhanced by including palliative 

care givers. New studies on WBRT decision making 

and on patient information are needed. 



The Psychometric Properties of Cancer Multi- 

Symptom Assessment Instruments: A 

Comprehensive Review 

Kirkova J. 1 , Walsh D. 1 , Karafa M.T. 2 , Aktas A. 1 , 

Schleckman E. 1 







States 

Introduction: Symptom assessment is an important 

outcome measure in palliative medicine. Symptom 

research requires data from valid, reliable 

instruments. We evaluated the characteristics of 

cancer multisymptom assessment instruments to 

determine their psychometric quality. 

Methods: We included all published instruments 

through 2009 that had at least one validity test and 

excluded those who only reported content validity. 

The psychometric properties of the instruments were 

summarized by 3 measurement scales: Visual 

Analogue-VAS; Numerical Rating-NRS, and Verbal 

Rating-VRS. The instruments were then ranked for 

thoroughness (number of reliability and validity tests 

done), and strength of evidence provided. We next 

classified both thoroughness and the evidence 

strength on a 4 level scale (poor, moderate, good, very 

good). The last level reflected consistent evidence 

from multiple tests and >1 study. 

Results: We analyzed 43 symptom instruments (15 

original; 28 modifications). 37 tested severity. 21 

evaluated frequency and distress. Amongst the 21 

who measured distress, 11 assessed it for each 

symptom, 5 a single question of overall distress, and 5 

an aggregate score. 4 measured duration. The overall 

evidence for VAS, VRS, and NRS measures resembled 

the thoroughness for validity, whereas that for 

reliability differed. Psychometric thoroughness and 

evidence were moderate to good. The exception was 

reliability, which was weak to good in most. The 

original MDASI had good reliability, and very good 

validity. The original ESAS, ESAS Italian, MDASI G, 

MDASI T, ASDS-2, MSAS-SF, POMS, and SDS all had 

good reliability and validity. 

Conclusions: Of the 43 instruments most had good 

validity and reliability for symptom frequency, 

severity, and distress. The MDASI had good reliability, 

and very good validity. Both the thoroughness and 

evidence were stronger for validity; typically 

moderate to good. Standardization in type, number of 

tests, and outcomes may improve instrument 

comparability. 



An Evaluaton of Spirituality in Palliative Care 

Using the EORTC QLQ-SWB38 

Ásgeirsdóttir G.H. 1,2 , Sigurbjörnsson E. 2 , Sigurðardóttir V. 1 , 

Gunnarsdóttir S. 3,4 , Vivat B. 5 , Young T. 6 

1 The National University Hospital of Iceland, 

Palliative Care Unit, Kópavogur, Iceland, 2 University 

of Iceland, Faculty of Theology and Religious Studies, 

Reykjavík, Iceland, 3 The National Hospital of Iceland, 

Dept. of Oncology, Reykjavík, Iceland, 4 University of 

Iceland, Faculty of Nursing, Reykjavík, Iceland, 

5 School of Health Sciences and Social Care, Brunel 

University, Uxbridge, Middlesex, United Kingdom, 

6 Mount Vernon Cancer Centre, Northwood, 

Middlesex, United Kingdom 

Background: Spirituality has been established as a 

critical component in palliative care. An international 

measure to assess spiritual issues is currently being 

developed by the EORTC, Quality of Life Group. The 



measure is intended to assess spiritual wellbeing 

among people receiving palliative care for cancer. 

Study design-method: Data from the pre-testing 

phase of the measure in Iceland were analyzed. The 

questionnaire, the QLQ-SWB38, contains 38 items 

that address spiritual, religious and existential issues. 

The items are set forth as statements concerning issues 

such as relationships with self and others, 

reconciliation, life-values, beliefs and perspectives. 

The response options are on a Likert scale, ranging 

from 1-4 for all items, except for a few such as spiritual 

wellbeing 1-7 and change in spiritual beliefs 1-5. The 

measure was completed by 30 individuals receiving 

palliative care at specialized palliative care units. 

Results: The mean age of the participants was 71.7 

years and the majority preferred company while 

completing the measure. Six months after 

participation 21 participants had died. Data analysis 

shows that the spiritual domain at this stage of life has 

a broad relevance. The mean scores in individual 

items were 3.57 for being able to trust others, 3.37 for 

trust in God or a supreme being, 3.47 of intercessions 

of others in prayer, 3.40 for forgiving others and 4.03 

for change in spiritual beliefs. 

Spiritual wellbeing had a mean of 5.73. Many of the 

participants used the measure as a starting point for 

further discussions. 

Conclusion: Spiritual, religious and existental issues 

are a part of the reality for people receiving palliative 

care. In spite of a life threatening disease and closeness 

to death spiritual wellbeing was rated high.The study 

stresses that spiritual care matters to general 

wellbeing. The study is a pioneer work in theological 

studies in Iceland and is important in further 

development of spiritual care. The study is self 

funded. 



Holistic Assessment of Supportive and 

Palliative Care Needs 

Ahmed N. 1 , Ahmedzai S.H. 1 , Noble B. 1 

1 The University of Sheffield, Academic Unit of 

Supportive Care, Sheffield, United Kingdom 

Background: Studies suggest that cancer and noncancer 

patients have needs that are not being fully 

met at the moment. At present, there is no widely 

used systematic, evidence-based, holistic approach to 

screening patients for supportive and palliative care 

needs. A systematic review of the literature was 

undertaken to research the evidence base. 

Aim(s): To provide an overview of holistic needs 

assessment in the fields of supportive and palliative 


Method(s): A comprehensive systematic review of 

the literature was undertaken to identify both 

published and unpublished material on holistic 

assessment in supportive and palliative care. The 

following sources were searched; electronic databases; 

grey literature sources; hand-searching of key 

journals; and contacting experts in the field. 

Results: A total of 63 papers were included in the 

review. There is overwhelming evidence to suggest 

that patients with cancer and other non-malignant 

chronic progressive illnesses can experience some 

very distressing symptoms, issues and problems, 

which can often remain unrecognised. There is little 

disagreement that routine systematic questioning is 

useful in identifying symptoms, problems and issues, 

that would otherwise not be identified by other 

means, such as during a routine consultation, or by 

using open-ended questions. The need for systematic 

questioning is essential if holistic needs are to be 

identified and addressed. Recommendations for 

holistic assessment are also presented. 

Conclusion(s): This review has presented a strong 

argument in favour of the need for a comprehensive 

holistic assessment of supportive and palliative care 

needs. There is evidence to indicate a lack of studies 

on the clinical utility of tools. Early identification of 

and monitoring of symptoms is only useful if effective 

treatment programs/systems are in place to address 

identified needs, and we must consider and evaluate 

new methods to achieve practice change. 

75 


(Thursday)


(Thursday) 




FAMCARE-2 - Translation and Cultural 

Adaptation for Use in Sweden: Backtranslation 

Relevance 

Klarare A. 1,2 , Lundh Hagelin C. 2,3 , Fürst C.J. 3,4 , Fossum 

B. 1,2 

1 Karolinska Institutet, Department of Clinical Sciences, 

Danderyds Hospital, Stockholm, Sweden, 

2 Sophiahemmet University College, Stockholm, 

Sweden, 3 Karolinska Institutet, Department of 

Oncology/Pathology, Stockholm, Sweden, 

4 Stockholms Sjukhem Foundation, Stockholm, Sweden 

Background: Cancer accounted for 13% of the 

deaths in the world in 2007. Research reports that 

depression, fatigue and mood disturbance are 

common in family caregivers. The FAMCARE scale 

has been proven as a reliable scale to measure family 

satisfaction with advanced cancer care. 

Translating an instrument into a second language 

requires researchers to go beyond the literal 

translation to a translation that captures the 

connotations of the original language. The Brislin 

model introduced in 1970 consists of translation, 

back-translation and using an expert committee to 

discuss discrepancies in translations. Back- translation 

has been regarded an essential component of 

translating instruments. It is not devoid of error 

however, and some argue that the back-translation is 

optional 

Aim: To translate and culturally adapt the FAMCARE- 

2 scale for use in Sweden and evaluate whether the 

back-translation method generates valuable insight 

motivating its use. 

Method: For the translation and cross-adaptation of 

the FAMCARE-2 instrument, the adapted Brislin 

guidelines from Guillemin, Bombardier and Beaton 

will be used. Firstly the instrument will be translated 

into Swedish, secondly back-translation to English. A 

review committee will discuss and compare the 

different translated versions. Pre-testing of the 

instrument will be performed on a small population 

using both versions of the translated instrument. A 

multi professional expert committee meeting will be 

called before the final version of the FAMCARE 

instrument is decided. The committee will analyze the 

result of the pre-testing using the two translated 

versions. The back-translation method will be 

evaluated and the final version of the instrument 

selected. 

The final results are estimated for January 2011. 

Funding is granted by the doctoral student’s employer 

at the university college. 



Validation of the Spanish Version of the Oral 

Assessment Guide (OAG) 

Carvajal A. 1 , Oroviogoicoechea C. 1 , Beortegui E. 1 , Soteras 

M. 1 , De la Hera C. 1 , Aznarez M. 1 , Aristu M. 1 , Orecilla E. 1 

1 Clinica Universidad de Navarra, Oncology 

Department, Pamplona, Spain 

Introduction: Oral care assessment is a key aspect to 

professionals when dealing with oncology and 

palliative care patients. The Oral Assessment Guide 

(OAG) (Eilers et al (1988) is an instrument designed to 

assess oral care in patients with cancer. A Spanish 

version has not been validated yet. 

Aim: Validate the Spanish version of the OAG by 

translation process and evaluation the psychometric 

properties of the scale in cancer patients. 

Methodology: The translation process was obtained 

using a reverse translation method by bilingual 

translators, a method commonly recommended by 

experts when cross-cultural studies are undertaken 

(Brislin 1970). The psychometric properties were 

evaluated in 40 patients receiving chemotherapy, 

radiotherapy or both. Patients were from the Oncohematology 

department. Reliability was studied by 

determining internal consistency (Cronbach’s Alpha). 

The concurrent validity with the Oral Mucositis 

Assessment Scale (OMAS) was also studied. To 

evaluate interrater reliability, two different nurses 

evaluate the oral cavity. The feasibility was measured 

asking to patients and nurses about the perception of 

the OAG. 

Results: There was not significant differences in the 

translation-reverse translation in the process of 

translation. The author of the OAG approved the final 

Spanish version of the questionnaire. Cronbach’s 

alpha for the translated scale was 0.6. Correlation of 

the translated version of the OAG and the OMAS was 

significant (0.458**). Intra-class correlation coefficient 

between the two nurses scores was 0.830**. Total 

value of the OAG scale was better correlated with 

patient perception of mouth situation (-0.515**) than 

the OMAS scale (-0.395*). Patients and nurses 

perception of the assessment process was positive. 

Conclusion: The translation process was carry out 

satisfactory. The Spanish version of the OAG is a valid, 

reliable and feasible instrument with adequate 

psychometric properties in cancer patients. 



Cancer Patients Needs in Multidisciplinary 

Approach in Romanian Context 

Popa C. 1 , Sporis M. 2 

1 Hospice Casa Sperantei, Social, Brasov, Romania, 

2 Hospice ‘Casa Sperantei’, Medical, Brasov, Romania 

Background: From the perspective of 

multidisciplinary holistic approach of Palliative Care 

we consider that is necessary to find out the real 

dimension of the cancer patients needs. Depending 

on the social, cultural, economical context specific for 

a community, the needs of cancer patients are 

particular. 

Aim: To establish the opportunity of starting a 

palliative care hospital team (HPCT) in the 

oncological department through the identification of 

patients’ complex needs. 

Method: The research was performed in the medical 

oncology department (50 beds) of a district hospital 

between February and May 2010. Patients were 

approached to give consent by the staff in the 

admission office. A self-applied questionnaire with 70 

items covering physical, psycho emotional, social and 

spiritual aspects was filled in by patients. The 

questionnaire was developed by Hospice “Casa 

Sperantei” in collaboration with Faculty of Sociology. 

Data were analyzed using SPSS 13.0. 

Results: From a total of 398 patients admitted in the 

department, 211 patients took part in the study 

(53.01%). Demographics: 46.9% men, 53.1% women, 

83.4% urban home, 15.6% rural home, 36.4% had 

primary education, 39.6 secondary education, 15.2% 

higher education. Physical needs: 77.7% had fatigue, 

57.3% pain, 43.1% nausea and vomiting, 37.5% 

constipation. Psycho emotional needs: 59.7% 

anxiety, 55% sadness, 50.7% insomnia. Social needs: 

70.6% decreased finance due to the illness, 55.5% 

insufficient income for buying medication, 53.4% 

insufficient income for food, 55% insufficient income 

for home maintenance. Spiritual needs: 36.5% from 

patients feel not in peace, 57.3% have not support 

from priest/ pastor. 

Conclusion: The identified needs were in all the 4 

areas, over ½ of the patients had uncovered basic 

social needs - food and shelter, needs beyond the 

resources of any HPCT. However a HPCT could 

address needs in the other domains and facilitate 

collaboration with organizations acting in the social 

field. 



Patient Expectations and Satisfaction 

Questionnaire (PESQ) as a Tool for Quick 

Assessment of Patients´ Needs 

Jarosz J. 1 , Czerwik-Kulpa M. 1,2 

1 Oncology Centre in Warsaw, Institute of Paliative 

Care, Warszawa, Poland, 2 Medical University of 

Warsaw, Institute of Medical Psychology, Warszawa, 

Poland 

The important issue for achieving the good quality of 

life in cancer patients is the problem of fit between care 

and patients’ needs and expectations. The approach 

which very well complies with the goals of palliative 

care is the “Warsaw Model” developed at the Oncology 

Centre in Warsaw in 1990, based on the authors’ own 

patient expectation questionnaire. This model stresses 

not only the need to treat symptoms but also to satisfy 

the patient’s psychological needs. The model’s 

rationale and the original questionnaire led to the 

construction of the Patient Expectation and 

Satisfaction Questionnaire (PESQ), which is 

theoretically rooted in Calman’s quality of life concept. 

Calman defines quality of life in terms of discrepancy 

between the individual’s expectations and hopes and 

their level of satisfaction. It is therefore imperative that 

we understand how patients perceive the difference 

between the ideal and the actual situation. 

The PESQ is a 24-items questionnaire measuring 9 

main areas: deciding about oneself, being informed 

about one’s health, social functioning, care about 

one’s family and relatives, being close with others, 

receiving care, silence and serenity, faith practices, 

watching TV. Each question states one need and has 

two parts - the patient evaluates the importance of 

said need and the level of its satisfaction. The results 

are used to calculate importance and satisfaction of 

needs’ areas. Then a new metric is derived: need for 

improvement, which shows how much the 

improvement in a particular aspect would influence 

the overall quality of life. 

The research has shown that PESQ is a powerful tool 

to identify patient’s important needs and improve 

their quality of life. 

PESQ proves useful in palliative care as the tool to 

quickly discover the areas that would benefit the most 

with the improvement of care. It can also be used to 

assess patients’ mental adjustment as the expectations 

named by the patient can predict the strategy and 

mental adjustment. 



Assessing Symptoms in Hematological 

Malignancies from the Patients´ Prespective: 

Feasibility of a Patients Reported Instrument 

in Clinical Research 

Cartoni C. 1 , Efficace, F. 2 , Niscola P. 3 , Brunetti G.A. 1 , 

Marini M.G. 4 , Reale L. 4 , Tendas A. 3 , Meloni E. 5 , Federico 

V. 1 , Alimena G. 6 , Mandelli F. 5 

1 Hospital Policlinico Umberto I, Hematology, Rome, 

Italy, 2 GIMEMA Foundation, Rome, Italy, 3 S. Eugenio 

Hospital, Hematology, Rome, Italy, 4 ISTUD 

Foundation, Milan, Italy, 5 Italian Association against 

Leukemias, Lymphoma and Myeloma (AIL), Roma, 

Italy, 6 University of Rome, Sapienza, Rome, Italy 

Aims: To investigate: 

i) the feasibility and sensitivity of a validated cancer 

patient-reported symptom tool (MD Anderson 

Symptom Inventory-MDASI) in patients with 

hematologic malignancies; 

ii) the pattern of symptoms prevalence of patients 

according to the phase of treatment (curative 

vs.palliative). 

Methods: Patients with hematological malignancies 

are being enrolled in a observational study assessing 

their symptoms’ burden with the MDASI, which 

consists of 19 items (i.e.13 items assessing symptom 

severity and 6 items assessing symptoms interference 

with the patient’s life). Descriptive statistics and linear 

regression analyses were used. 

Results: To date 86 patients with a mean age of 65 

years (26% in curative phase and 74% in palliative 

phase), affected by acute myeloid leukemia (42%), 

non Hodgkin lymphoma (20%) and myelodysplastic 

syndrome (10%) are evaluable. Accuracy of 

questionnaire completion was optimal with more 

than 80% of patients completing all items. The 

percentage of missing items was low ranging between 

1% to 5%. The top three moderate to severe 

symptoms in terms of prevalence were: fatigue (80%), 

dry mouth (57%) and distress (54%) in the palliative 

group, and fatigue (50%), lack of appetite (46%) and 

nausea (38%) in the curative treatment group. Except 

for lack of appetite, vomiting and nausea, all mean 

scores were statistically significant different at (P< 

0.05) between two groups. Means of symptom 

interference for those in curative and palliative phase 

of treatment were 4 (SD=2.5) and 6.6 (SD=2.5) 

respectively, indicating symptoms severity having a 

higher impact on patients’ life undergoing palliative 

treatments. 

Conclusions: The results suggest the MDASI being a 

feasible tool that can be successfully implemented in 

haematological research; it is also able to discriminate 

different profiles based on type of treatment (curative 

vs. palliative). Regardless of illness phase, fatigue is the 

most relevant symptom identified by this measure. 



Is the Intrahospital Cancer Mortality Risk 

Model a Useful Tool for a Hospital-based 

Palliative Care Team? 

Tavares F.A. 1 



Portugal 

The Bozcuk’s Intrahospital Cancer Mortality Risk 

Model (ICMRM) is recognised as a useful prognostic 


tool for a general population of solid cancer patients, 

requiring data readily available. Its meaningfulness 

for hospital-based palliative care (HBPC) patients 

remains unknown. 

Aim: To validate the ICMRM in patients on a HBPC 

program at a Portuguese teaching centre. 

Methods: During a 9-month period the model was 

prospectively applied to all admitted solid cancer 

patients followed by our team. Length of stay (LOS), 

cancer treatment status, admission setting 

(elective/emergency), and survival were compared for 

patients who died in or who were discharged. 

Results: 205 episodes were recorded (152 patients, 

59% male, median age 66, 20% colorectal cancer, 34% 

on active treatment, median survival 22days). In 60% 

of admissions the ECOG performance status (PS) was 

4. Elective (22% of) admissions were more frequently 

requested for patients with ECOG PS other than 4 (59 

vs 35%, p< 0.01). The admission setting, treatment 

status and outcome (death/ discharge) failed to 

significantly influence the LOS (median 9 days, range 

0-187). Elective patients, those under treatment or 

those discharged survived longer than respectively, 

emergency admitted (33 vs 19days, p< 0,001), 

without active treatment (187 vs 19days, p< 0.001) 

and who died in hospital (60 vs 13days, p< 0.001). 

Gender, age, treatment status and ICMRM score were 

univariate determinants of intrahospital mortality. All 

but age remained significantly and independently 

associated with the likelihood of intrahospital death 

(female RR:0.62, p=0.02; active treatment RR:0.48, 

p=0.002 and ICMRM score RR:1.2, p< 0.001). The 

ROC area of ICMRM (0.70, 95%CI 0.63-0.78) was 

lower than on Bozcuk’s study as haemoglobin value, 

duration of disease and admission setting failed to 

influence the risk of intrahospital death in our cohort. 

Conclusion: Despite slightly less accurate than 

originally described ICMRM can identify higher risk 

HBPC patients. 



Risk of Malnutrition in Frail Patients 

Gamboa Antiñolo F. 1 

1 H Valme. Universidad de Sevilla, Internal Medicine, 

Sevilla, Spain 

Introduction: Continuity of care unit (UCA) is a 

unit certified in internal medicine at the hospital area 

Valme (Sevilla. Spain). It is oriented to the fragile 

patient care and palliative care, encouraged continued 

attention to primary care. Among the aspects to 

promote safe care for this early attention to 

malnutrition and morbidity condition of the sick. 

Research aims: This paper intends to test the 

feasibility of our environment for scale MUST and 

DETERMINE as a method of screening for 

malnutrition in these patients 

Study design and methods: We analyzed the risk 

of malnutrition among patients admitted the day 

05/27/2009 in the unit beds. MUST scale consists of 3 

items and values of 0-6 the risk of malnutrition. 

DETERMINE scale is a survey of 8 simple questions. 

Results: 60 patients were admitted with a mean age of 

82. 13 patients came from nursing homes. 60% were 

dependent (Barthel under 20). 50% were diabetic. 

Pressure suffered injuries in 33%. It was not possible to 

carve or to measure properly to 80% of them being 

used to calculate arm circumference to MUST. 70% of 

patients had a MUST greater than or equal to 2 which 

implies a high risk of malnutrition. 73% of the patients 

had a value greater than 6 on the DETERMINE scale d 

which implies high risk of malnutrition. 26% of 

patients had enteral nutrition on the day of screening. 

Conclusion: The application of MUST or 

DETERMINE scale detect similar rates of patients at 

risk of malnutrition around 70%. It is necessary to 

implement nutritional screening in this population in 

a systematic way to take appropriate measures to 

improve the quality of care. 



The Image of Palliative Care among the 

General Population. Development, Testing 

and Application of a Scientific Sensible 

Measuring Instrument 

Moens K. 1 , Smits D. 1 , Grypdonck M. 2 , PRAGODI 

1 2 HUBrussels, Brussels, Belgium, UGent, Gent, 

Belgium 

Introduction: To use palliative care(PC) in a 

sensible way it’s necessary that one is well informed 

and one has a right image of PC. Research shows that 

this often doesn’t seem to be the case. This project 

study developed an instrument that can examine how 

the image of PC is correct. The first aim of the project 

was to measure the views of professionals and those of 

non-professionals. The second aim of the project was 

to realize a first application of the instrument within 

one big group of respondents. This application took 

place within all first year nursing students of the 

colleges within the Catholic University of Leuvenassociation. 

Methods: First of all, we developed well fitted and 

content valid items through the interviewing of 

palliative caregivers, non-palliative caregivers, 

potential users of PC and relatives. We interviewed 

until we reached a point of saturation. After the 

review of the items by 7 palliative care content experts 

and 2 language experts, we studied the validity and 

reliability of the items via a Q-sort procedure and a 

test-retestprocedure. After this we completed the 

items. Finally, a big survey among a group of first year 

nursing students took place. 

Results: In total we held 7 focusgroupinterviews and 

8 individual interviews. The result of the project is a 

measuring instrument with 35 items which can be 

used to examine the image of PC. Within these 35 

items there are 15 items that examine the opinion of 

potential respondents and the other 20 items gauge 

the level of knowledge concerning the Flemish 

palliative care provisions. 

Conclusion: We developed a measuring instrument 

that can be used in different ways for example within 

descriptive studies(what does a particular part of the 

population think about PC) and within the 

evaluation of information interventions( in which 

way and on which points did a situation improve). 



Nursing Assessment in Oncologia Patients 

Admitted to the Palliative Care Unit 

Sales P. 1 , Cañadas M. 1 , Diaz A. 1 , Garcia R. 1 , Ramirez D. 1 , 

Cabrera M. 1 

1 Health Corporation Parc Tauli, Palliative Care Unit, 

Sabadell, Spain 

Objectives: To describe the characteristics of 

oncologic patients on the nursing assessment at 

admission to the palliative care unit. To report the 

multidisciplinary team’s assessment of the problems 

and needs of these patients. 

Methods: The multidisciplinary team prospectively 

recorded the following information during the first 72 

hours after admission from all oncologic patients 

admitted to the unit between August 20, 2009 and 

November 20, 2009: sociodemographics, results of the 

nursing assessment (condition of the skin and oral 

mucosa, alimentation, urinary and fecal continence, 

respiration, sleep disturbances, communication, 

eyesight and hearing, the need for technical nursing 

procedures), the Barthel Activities of Daily Living 

index, and main problems. 

Results: Of the 160 patients admitted, 143 met the 

inclusion criteria; 68.5% of these were men and 51.7% 

were between 65 and 80 years old. Skin problems were 

observed in 65%; dryness of the oral mucosa was 

observed in 32.2%. Oral feeding was possible in 

69.9%. Urinary incontinence was present in 38.5% 

and fecal incontinence in 28.7%. Sleep disturbances 

were present in 43.4%, and 79.7% had subcutaneous 

catheters. On the Barthel index, 32.2% were scored as 

having mild functional dependence on admission, 

but at discharge 72% (103) were scored as having a 

high functional dependence. 

The team detected the following problems: isolated 

pain in 22.4%, pain associated to other symptoms in 

29.4%; dyspnea in 9.1%, and functional deterioration 

in 9.1%. 

Conclusions: A high percentage of patients had dry 

and/or pallid skin. Many had dry mouth. Functional 

dependency was higher at discharge. Most patients 

had intravenous and/or subcutaneous catheters. 

Isolated pain or pain associated to other symptoms 

was the main problem detected by the team. 



Nutritional Risk Status as a Predictive Factor 

for Survival in Patients with Pancreatic Cancer 

Rao N. 1,2 , Bye A. 1,2 , Bovim I.M. 3 , Iversen P.O. 4,5 , Hjermstad 

M.J. 1,6 

1 Regional Center for Excellence in Palliative Care, 

Department of Oncology, Oslo, Norway, 2 Akershus 



University College, Lillestroem, Norway, 3 Healthy 

Girls-Sport, Oslo, Norway, 4 University of Oslo, 

Department of Nutrition, Oslo, Norway, 5 Oslo 

University Hospital, Ullevaal, Department of 

Haematology, Oslo, Norway, 6 European Palliative 

Care Research Centre, St. Olavs University Hospital, 


Objectives: Cachexia, characterized by weight loss, 

low dietary intake and decreased muscle strength, has 

a negative impact on mortality in patients with 

advanced pancreatic cancer (PC). Study aim was to 

use two different definitions of cachexia and two 

methods for assessment of nutritional status and then 

examine the relationship between cachexia, 

nutritional status and survival. 

Methods: From 2006 to 2008, 39 patients 

(F:18/M:21) with newly diagnosed advanced PC were 

followed every 4 th week until death. Definitions of 

cachexia were 

(I) weight loss ≥10%, and 

(II) the presence of any two of the following three 

factors: weight loss >10%, reduced food intake (< 1500 

kcal/d) and systemic inflammation (CRP >10mg/l). 

The Subjective Global Assessment (SGA) was used to 

assess nutritional status at inclusion (SGA A=well 

nourished, B=moderately malnourished, C=severly 

malnourished). The Nutrition Risk Screening 2002 

(NRS2002) was used to screen for patients at 

nutritional risk. 

Results: Median age was 62 years (range 48-88), 

median ECOG status 1 (0-2). 17 (44%) patients had 

locally unresectable cancer, 16 (41%) metastatic, and 

six (15%) recurrent disease. Median survival was 26 (3- 

116) weeks and 32 (82%) patients died during followup. 

No significant difference in survival was found 

between the non-cachectic and cachectic patients 

with either of the two definitions. The median 

survival of the patients with SGA B (19, 48%) was 34 

weeks (95% CI; 16.9 - 51.1) compared to 22 weeks 

(95% CI; 13.7-30.3, p = 0.05) of the patients with SGA 

C (18, 46%). NRS2002 identified 31 (79%) patients as 

being at nutritional risk and with a median survival of 

22 weeks (95% CI; 16.5-27.5), while those classified as 

“not at risk” (8, 21%) had a median survival of 40 

weeks (95% CI; 32.3-47.7, p>0.05). 

Conclusion: PC patients identified as being 

malnourished or at nutritional risk by both screening 

tools, had poorer survival than those classified with 

better or adequate nutritional status. 



Responsiveness of the MOBID-2 Pain Scale 

Husebo B.S. 1,2 , Strand L.I. 1 , Moe-Nilssen R. 1 , Aarsland 

D. 3,4 

1 University of Bergen, Department of Public Health 

and Primary Health Care, Bergen, Norway, 

2 University of Bergen, Kavli Research Centre for 

Dementia, Bergen, Norway, 3 University of Bergen, 

Stavanger University Hospital, Stavanger, Norway, 

4 University of Oslo, Akershus University Hospital, 

Oslo, Norway 

Research aims: In patients with dementia, the 

assessment and treatment of pain and evaluation of 

treatment effect is challenging, caused by patients` 

lack of language and abstract thinking. Thereby, 

responsiveness of a pain scale is the prerequisite for 

evaluating the success of pain treatment. In earlier 

studies, the Mobilization-Observation-Behaviour- 

Intensity-Dementia (MOBID-2) Pain Scale 

demonstrated high internal consistency, reliability, 

and validity. In this study, it was the aim to examine 

the responsiveness of the MOBID-2 Pain Scale. 

Methods: Cluster randomized 8-week double-blind 

controlled trial with follow-up assessment 4 weeks 

after end of intervention. 18 nursing homes in 5 

municipalities in Western Norway were included and 

352 moderate to severe demented patients were 

randomized to control or individual pain treatment. 

Participants, primary caregivers and the research 

assistants responsible for data collection were blinded 

to group assignment. Patients received individual 

pain treatment with paracetamol, morphine retard, 

buprenorphine plaster, and pregabaline, 7 days a 

week for 8 weeks. Combination of drugs was possible. 

Prevalence of pain and treatment effect was assessed 

by MOBID-2 Pain Scale. The Cohen-Mansfield 

agitation inventory, Neuropsychiatric inventory - 

nursing home version, and Activities of Daily Living 

were external indicators representing the anchorbased 

approach. Paired-Samples T-Test for repeated 

measures and Independent-Samples T-Test for 

comparison between groups were used. Treatment 

effect was expressed by difference between two 

77 


(Thursday)


(Thursday) 


weighed means, along with 95% CI and P values. 

Intracluster correlation coefficient was analyzed by 

One-way analysis of variance. 

Results: The study design and preliminary results 

will be presented. 

Conclusion: Responsiveness studies are challenging, 

but possible, in observational studies using a proxy 

rater. A RCT study design with large sample size is 

recommended. 



RIMAS: A Repository of Portuguese Validated 

Patient Reported Outcomes (PRO) Intruments 

Ferreira P.L. 1,2 , Gil J. 1,3 , Cavalheiro L. 1,3 

1 Centre for Health Studies and Research of the 

University of Coimbra (CEISUC), Coimbra, Portugal, 

2 Faculty of Economics, University of Coimbra, 

Coimbra, Portugal, 3 Coimbra Higher School of Health 

Technology, Coimbra, Portugal 

Aim: RIMAS is an open access internet repository of 

health outcome instruments, fully accessible to the 

entire community of users. Its main objective is to 

facilitate information and access to PRO questionnaires 

as well as promoting their appropriate use in research, 

clinical practice, and socio-sanitary management. 

Methods: Instruments are identified by systematic 

literature reviews. The RIMAS Scientific Committee 

selects PRO instruments available in Portuguese, with 

the description of its main psychometric 

characteristics, constructs measured, target 

population, disease-specific category based on the 

ICF, and the way to administer them by researchers, 

students and health professionals. Requests were 

made for formal authorizations to reproduce and 

distribute the instruments to both authors of the 

original and the Portuguese versions. 

Results: Currently information is available on 

hundreds of PRO instruments in Portuguese, including 

generic health related quality of life measures, domain 

specific, health condition specific, signs and 

symptoms, region specific and population specific 

measures. Among the health condition and 

population measures some are, respectively, neoplasm 

and terminal and palliative care instruments. 

Conclusions: RIMAS facilitates access to potential 

users of PRO instruments in Portuguese speaking 

countries. Its impact is expected to be on the 

bibliographic search and on the elaboration of 

research projects, theses and students’ dissertations, 

to provide information to healthcare providers and 

health researchers, to contribute to the improvement 

of the collaborative relationships among schools and 

research centers, and, at last, to contribute to a wider 

and systematic use of validated health outcome 

measures, culturally adapted for Portugal. 

This project is partially funded by Pfizer Laboratories. 



Symptoms Clusters in Patients with Advanced 

Cancer 

Cristófero Yamashita C. 1,2 , Ballerini J.G. 1 , Becker F.T. 1 , 

Chiba T. 3 , Yamaguchi Kurashima A. 2 

1 Instituto do Câncer do Estado de São Paulo, São 

Paulo, Brazil, 2 Fundação Antonio Prudente, Hospital 

do Câncer A.C. Camargo, São Paulo, Brazil, 3 Instituto 

do Câncer do Estado de São Paulo, Clinica Médica/ 

Cuidados Paliativos, São Paulo, Brazil 

Introduction: For a Palliative Care (PC), adequate 

symptom control presents important quality of life. 

Different symptoms may occur in combination or 

suffer influence from each other. Clusters approach 

may target multiple symptoms simultaneously, 

resulting in therapeutic benefit. This study describes 

the symptoms of patients undergoing PC and the 

symptoms clustering. 

Method: This is a retrospective study. Review of 109 

patients referred for the PC at a tertiary cancer public 

hospital between January and May 2010. The 

Edmonton Symptom Assess Scale (ESAS) measure to 

frequency and severity of 11 symptoms including 

pain, fatigue, nausea, depression, anxiety, drowsiness, 

appetite, sense of well-being, pruritus and dyspnea. 

Variables included gender, age, diagnosis and the 

symptoms. To evaluate the clusters in patients with 

advanced cancer, a confirmatory factor analysis was 

performed. 

Results: The majority was male (58%). The mean age 

was 63, range from 28 to 90. The prevalent diagnosis 

was: Gastrointestinal (55%) and Head and Neck 

(19%). The most common symptoms were: pain 

(74%), fatigue (73%), depression (69%), anxiety and 

somnolence (62% each), anorexia (57%) malaise 

(52%), nausea (41%) and shortness of breath (37%). 

After analysis, symptoms were grouped into three 

factors: Factor 1: pain, depression, anxiety and poor 

well-being; 

Factor 2: fatigue, nausea and loss of appetite; 

Factor 3: drowsiness and shortness of breath. 

For Gastrointestinal tumors, the clusters have 

changed to 

Factor 1: fatigue, nausea, loss of appetite and poor 

well-being; 

Factor 2: pain and shortness of breath; 

Factor 3: depression, anxiety and drowsiness. 

For Head and Neck tumors, the clusters were: 

Factor 1: pain, anxiety, loss of appetite and poor wellbeing; 

Factor 2: depression and shortness of breath; 

Factor 3: fatigue, nausea and drowsiness. 

Conclusion: The treatment of one symptom may 

positively interfere in other included in the specific 

cluster improving the overall quality of life of the 

patient. 



What Does the Answer Mean? A Qualitative 

Study of how Palliative Cancer Patients 

Interpret and Respond to the Edmonton 

Symptom Assessment System (ESAS) 

Bergh I. 1 , Kvalem I.L. 2 , Aass N. 1,3 , Hjermstad M.J. 1,4 

1 Oslo University Hospital, Department of Oncology, 

Oslo, Norway, 2 University of Oslo, Department of 

Psychology, Oslo, Norway, 3 University of Oslo, 

Faculty of Medicine, Oslo, Norway, 4 European 

Palliative Care Research Centre, St. Olavs University 

Hospital, Department of Cancer Research and 

Molecular Medicine, Trondheim, Norway 

Objectives: ESAS is a widely used and well-known 

self-reporting tool for assessment of symptoms in 

palliative care (PC). Research has shown that patients 

experience difficulties in the scoring and the 

interpretation of some of the questions, which may 

lead to suboptimal treatment. 

Aims were to examine how palliative cancer patients 

interpreted and responded to the ESAS. The research 

questions were: 1. How did the patients interpret the 

different symptoms? 2. Did the response format 

influence their interpretation and their responses? 3. 

Did previous experience with the ESAS influence their 

answers? 

Methods: A convenience sample of PC inpatients 

were interviewed by means of cognitive interviewing, 

according to a standardized interview guide, 

immediately after having completed the ESAS. 

Results: Ten eligible patients declined participation. 

The sample consisted of 11 patients (W:3/M:8) with 

mixed diagnoses, range 34-95 years. The highest 

mean scores were found with tiredness (6.3) and oral 

dryness (5.7). Results showed that sources of error 

were related to how the symptoms were interpreted 

and to differences in the understanding and use of the 

response format. The depression and anxiety 

symptoms were viewed as difficult to interpret, while 

the appetite item was particularly prone to 

misunderstandings (n = 4). Contextual factors like 

mood, specific events and time of the day, influenced 

the patients’ answers. Lack of information and 

feedback from the health care providers influenced 

how the patients chose to score. Some patients stated 

that they put random scores because they did not 

understand why and how the ESAS was used. 

Conclusion: The patients’ interpretation must be 

considered in order to minimize errors. The ESAS 

should always be reviewed together with the patients 

after completion in order to improve symptom 

management, thereby strengthening the usability of 

the ESAS. 



The Correlation of Plasma Endotoxin and 

Components of Systemic Inflammatory 

Response Syndrome in Terminally Ill Cancer 

Patients 

Jung H.H. 1 , Choi Y.S. 1 

1 Korea University Guro Hospital, Family Medicine, 

Seoul, Korea, Republic of 

Research aims: Most of terminally ill cancer 

patients died of multiple organ failure (MOF) 

preceding Systemic inflammatory response 

syndrome(SIRS). Serum endotoxin known as the 

cause of multiple organ failure and shock, stimulates 

the secretion of various cytokines and acute phase 

reactants. This study will investigate the correlation 

between the endotoxin and inflammation indices by 

the degree of the systemic inflammation of terminal 

cancer patients. 

Study design and methods: Fifty-nine out of sixtysix 

terminally ill cancer patients referred to palliative 

care center, Korea University Guro Hospital from 

April 2009 to October 2009 were analyzed in this 

study. We performed correlation analysis between the 

plasma endotoxin and inflammation indices in the 

degree of the systemic inflammation. 

Results: As increasing the number of SIRS 

components, CRP were increased(r=.300, p< 0.05) 

whereas lymphocyte was decreased(r=-.332, p< 0.01). 

The plasma endotoxin and ESR do not demonstrate 

any significant correlations with the number of SIRS 

components. 

Conclusion: Lymphocyte, and CRP correlate with 

the degree of systemic inflammatory condition of 

terminally ill cancer patients. However, the plasma 

endotoxin concentration does not show the 

correlation with the states of systemic inflammation 

as well as with other inflammation indices. 



Symptom Assessment in Palliative Care 

Ribeiro A.S.C.D. 1 , Faria R.J.M. 2 

1 USF Viver Mais, General Practice, Santa Maria de 

Avioso, Portugal, 2 USF Renascer, Gondomar, Portugal 

Introduction: Skills in bedside symptom 

assessment are especially important for patients with 

advanced illness because they may be too weak to 

undergo diagnostic studies. Discussing symptoms and 

their functional impact can yield insights into 

patient´s disease and its effect on patient´s life. 

Patients with advanced illnesses have multiple 

symptoms. The importance of assessing them 

efficiently is increasingly recognized. Instruments are 

now available that assess multiple symptoms and 

provide a summary index. 

Aim: Review the utility of rating instruments in 

symptom assessment in palliative care. 

Methods: Research in Evidence Based Medicine sites 

of articles published between 2001 and 2009, written 

in English, with the keywords “symptom assessment” 

and “palliative care”. 

Results: Patient descriptions and symptom ratings 

are the primary data for symptom assessment. Asking 

patients about their symptoms requires gentleness 

and patience. Frequently encountered symptoms 

include pain, fatigue, dyspnea, nausea, dry mouth, 

edema and confusion. 

In evaluating symptoms, it’s helpful obtain the 

patient´s rating of symptom severity in a given time 

frame. Some are unable to rate their symptoms on a 

numerical scale. An alternative approach is to ask 

them for their rating of symptom distress rather than 

severity and to give categories of response. The 

amount of interference with daily activities caused by 

a symptom also can illustrate its severity. 

Instruments are available that more uniformly 

characterize symptoms. They generally ask patients to 

rate different aspects of symptoms: severity, distress, 

effects on function, etc. They’re available for 

specific/groups of symptoms, and have been tested on 

groups of patients to ensure that they are valid and 

meaningful. 

Conclusion: The use of rating instruments has 

helped deepen the understanding of symptoms. 

However, detailed instruments are not available for all 

symptoms, and patients may not be able to answer 

the multiple questions in them. 



The Most Prevalent Nursing Diagnoses Assesed 

in a Palliative Care Support Team 

Díaz Díez F. 1 , Julián Caballero M. 1 , Bonino Timmermann 

F. 1 , Ruiz Castellanos Y. 1 , Redondo Moralo M.J. 1 

1 Servicio Extemeño De Salud. Hospital Perpetuo 

Socorro, Badajoz, Spain 

Objectives: Our proposal was to know the most 

prevalent nursing diagnoses when a patient is 

included in Palliative Care Program in Badajoz Area. 

Study desgin and method: A retrospective and 

descriptive study was conducted. Data were collected 


from clinical records of patients included in Palliative 

Care Program from January to June 2010. Variables 

studied were: age, gender, disease, place where the 

patient was assessed at inclusion time (home, 

hospital). We agreed that a prevalent nursing 

diagnose is one repeated in 80% of clinical records 

reviewed. Marjory Gordon functional patterns and 

NANDA (North American Nursing Diagnosis 

Association) taxonomy Classification (2005-2006) 

were used as assessment tools. 

Results: 184 clinical records were included. 171 of 

these ones had nursing report. The average age was 

71.1 years (62.5% men and 37.1% women). We also 

extracted from the sample that the majority suffered 

oncological diseases against 7.1% non cancer 

patients. 59.7% was assessed at first in hospital, 15.2% 

in urban homes, 21.7% in rural homes and only 2% in 

nursing homes. 

We collected 342 nursing diagnoses and the most 

prevalent were: 0045 risk for damage oral mucosa 

(27,1%), 0047 risk for impaired skin integrity (16.6%), 

0011 constipation(11.98%), 0133 chronic pain 

(15.4%). 

Conclusions: We could observe the most prevalent 

diagnoses detected at inclusion time were related to 

physical impairment. We highlight the importance 

about a standardized and validated nursing work 

methodology in order to identify physical, emotional 

and social problems to ensure the best quality of care. 



Illness Marker and Phase Angle in Cancer 

Patients in Palliative Care 

Faria S.O. 1 , Rodrigues N. 2 , Locatelli A.F. 2 , Russo L. 2 , Chiba 

T. 1 , Cardenas T. 2 , Camacho-Lima S. 2 

1 São Paulo Cancer Institute, Palliative Care, São Paulo, 

Brazil, 2 São Paulo Cancer Institute, Nutrition, São 

Paulo, Brazil 

Introduction: Illness marker (IM) and Phase Angle 

(PA) are measurements obtained from 

multifrequencial bioelectrical impedance analysis 

(MBIA). It´s not very known if they play any role as 

mortality marker in several clinical conditions. 

Objective: Evaluate IM and PA measurement in 

hospitalized palliative care patients, hosted at the Sao 

Paulo Cancer Institute - ICESP, Brazil. 

Subjects/methods: Multifrequency bioelectrical 

impedance analysis (MBIA) was performed 

(QUADSCAN®, Bodystat) in all patients. Illness marker 

was obtained from the ratio between 5 kHz and 200 

KHz impedances. Phase angle was calculated directly 

from reactance (Xc) and resistance (R). PA = arctangent 

reactance/resistance x 180º/3,14. The patients 

were classified according to age, gender, nutritional 

status (Body Mass Index-BMI), NRS-2002 (Nutritional 

risk screening-2002) and Karnofsky Performance Scale 

(KPS). 

Results: Fifteen patients (60,0% male, aged 

56,1±13,9 years) were evaluated. Most of them (60%) 

were underweight (BMI= 22,58 ± 6,54kg/m²) and had 

low KPS score (52 ± 18%). Only 20% of them were not 

classified as being nutritionally at risk at hospital 

admission (NRS-2002: 3,13 ± 0,74). IM was 0,85 ±0,05 

and PA was 2,52 ± 1,40°. 

Conclusion: Palliative care cancer patients show low 

phase angle and illness marker values, which might 

have prognostic implication. More studies are 

necessary to correlate these simple measurements 

with prognostic scales. 



The Use of Palliative Outcome Scale at Acute 

Hospital in Portugal 

Fradique E. 1 

1Hospital Santa Maria, Palliative Care Unit, Lisboa, 

Portugal 

Objectives: This study aims to determine how a 

team-hospital support in palliative care can improve 

some aspects of quality of life of cancer patient followup 

is a hospital or an outpatient. 

Methods: It used the Palliative Outcome Scale (POS) 

and Edmonton Scale Assessment Symptom (ESAS) in 

two different times:before the intervention and 10 

days after .The sample consisted of 25 cancer 

patients,and the mostly was women (56%),and most 

cared for at home (76%),with caregiver effective in 

about 96% of cases. 

Results: The reason for referral to the team stands 

combination of various reasons (pain, dyspnoea, 

psychological, social support) in 48%, pain in 

32%,continuity of care in 16% and other symptoms 

in 4%.As for the Functional Level,measured by the 

Eastern Cooperative Oncologic Group (ECOG) and 

Karnofsky Performance Status Index(KI).It was no 

difference in the degree of functional capacity in two 

phases,with the sample an oscillation between grades 

2 and 3 of the ECOG.With regard to the KI,the sample 

remained approximately the average of 50%.It was as 

a result improvements in aspects related to 

symptomatic pain,appetite and depression.In other 

aspects, there were significant changes evident in the 

aspects related to the importance of life for the 

patient,the anxiety of the family and in total POS 

score reflecting an overall improvement in the general 

aspects of quality of life for the patient.In the external 

consultation the study population of 19 patients 

showed improvements in total score from the 

POS,depression,anger,the importance of life for the 

patient and family anxiety,whereas the 6 patients 

followed in hospital,only improved the appetite. 

Conclusions: It was observed some barriers:a high 

mortality of patients during the period of interview 

and a difficulty of filling of the inquiries, however 

were possible to see the improvement in some aspects 

of quality of life of cancer patients followed by a 

Intrahospital palliative care support team at Acute 

Hospital. 



Assessment of Pain and Symptoms in Dying 

and Unconscious Nursing Home Patients. A 


Sandvik R. 1 , Husebo B.S. 1,2 




Dementia, Bergen, Norway 

Research aims: In Norway, 40% of all deaths (about 

17500) occur in a nursing home (NH) every year, and 

most of them are unconscious or severe demented. A 

prerequisite for optimal pain and symptom 

management is systematically assessment of 

symptoms, like dyspnoe, nausea, death rattle or 

anxiety. This may be challenging in NH patients due 

to lack of memory, language, and abstract thinking. 

In the last years, the Edmonton Symptom Assessment 

System (ESAS), Liverpol Care Pathway (LCP), Resident 

Assessment Instrument for Palliative Care (RAI), 

Patient Outcome Scale (POS) and other relevant 

instruments are developed and implemented in 

palliative care settings, including patients with selfreport 

capacity. This review aims to investigate the 

psychometric properties of relevant instruments, 

including unconscious patients evaluated by a proxy 

rater. 

Methods: A systematic search of the PubMed and 

Cochrane databases for the period 1992-2010 was 

performed, using palliative care, dying, end-of-life 

care, assessment instruments, pain, pain assessment, 

dyspnoe, nausea, death rattle, anxiety, depression, 

mouth care, unconsciousness, dementia, proxy rater, 

ESAS, LCP, RAI, and POS as search terms. Inclusion 

criteria were: prospective studies including 

unconscious and demented patients receiving end-oflife 

care, interventions focusing on pain and 

symptom assessment and management. 

Results: Psychometric property studies of the 

existing instruments do not include unconscious and 

dying patients assessed by a proxy rater, and results 

regarding internal consistency, reliability, and 

validity are inconsistent. Some of these instruments 

seem to be extensive, time consuming, and difficult to 

use in a clinical NH setting. 

Conclusion: There is a profound dearth of rigorous 

studies evaluating instruments assessing pain and 

other symptoms in dying, unconsciousness patients. 

Further development and improvement of the 

existing instruments are needed. 


Withdrawn 



An Strategy to Identify the Suffering in a 

Clinical Practice 

Lacasta-Reverte M.A.M.A. 1 , Vilches Y.Y. 2 , Alonso A.A. 2 , 

Diez L.L. 2 , Gonzalez -Barón M. 1 



1 Hospital Universitario La Paz, Cuidados Paliativos, 

Madrid, Spain, 2 Hospital la Paz, Paliativos, Madrid, 


Introduction: The suffering is defined as a 

“complex emotional state, cognitive and negative 

behavioral characterized by the feeling that the 

individual has of being threatened in their integrity, 

due the feeling of powerlessness to face such threat 

and for the exhaustion of personal resources and 

psychosocial that would allow him to face the threat”. 

The effort degree to face the situation its 

going to depend on the joint evaluation of the 

degree of threat and the sources to face it. 

Objective: Rate the relation between effort and 

suffering to face the situation. 

Method: The correlation is evaluated between 

suffering (EVA 0-10) and effort (EVA 0-10). 

278 cancer patients undergoing chimotherapy will 

take part in this sudy. 176 women. The average (DS) 

age is 56,67 (13,44) years. 

Statistical analysis: Spearman correlation coefficient, 

Mann-Whitney test. 

Results: The 79 % of the patients reflected suferring. 

The 47% moderate/ intense. 

The 82% of the patients reflected effort to face their 

situation. The 56% moderate/intense. 

The data shows a positive correlation (p 0,001) 

moderated between effort and suffering (Spearman 

r=461). 

The people who are corcened about something are the 

ones who show the more suffering (p 0,001). The ones 

who suffer the more use strategies to face their 

situation (p 0,05). Although more suffering is 

appreciated in women it is not significant (p=0,098). 

The people who are corcened about something are the 

ones who show the more effort (p 0,001). However, 

the data show that women mark higher in effort (p 

0,05). 

Conclusions: The people who make more effort to 

face their situation present a bigger suffering. There is 

a moderated correlation between both variables. We 

could consider “ the effort a person requires to face 

their situation” like a screening strategy to detect the 

suffering in the first instance. 



Palliative Care Development in Tajuikistan 

Kurbonbekova Z. 1 , Abidjonova N. 2 

1 Open Society Institute, Public Health, Dushanbe, 

Tajikistan, 2 OSI Tajikistan, Public Health, Dushanbe, 

Tajikistan 

Annually in Tajikistan about 75 000 people extremely 

need in PC. 70 % of addressed patients to the cancer 

centers have advanced cases of diseases (3-4 stage) 

that significantly deteriorate the prognosis. The 

absence PC also intensifies this situation. The total 

number of cancer patients for 2009 - 10054, the new 

cases 2730 from them 1218 male and 1512 female. 

Died 2073 patients. 

Despite of the formal recognition by the state and the 

community the importance of this problem (medical 

and social) and establishment of palliative care 

centers, no specific steps in this area had been made 

yet. In the presence of wide network of patient care 

institutions in the Republic none of them has ward for 

palliative care for incurable people, no hospices. 

Aim: Development of PC for suffering people and 

protection of their rights of dignity through macro 

level influence with an aim to change existing 

legislation and legal information of beneficiaries. 

Methods: Conducted need assessment on PC 

provision in Tajikistan, educational trainings, 

exchange programs,conducted analysis on opioid 

availability 

Results: The l research conducted reveled, that one 

of the main obstacles for PC provision in the republic 

are the following: absence of the unified system of 

palliative care provision; lack of specialized 

institutions, departments, hospices; lack of trained 

specialists on palliative care principles; 

methodological and practical centers for capacity 

building in this field, lack of support from policy 

makers, opioids availability. 48, 3% of interviewed 

experts noted the deterioration of the situation of PC 

provision during the last years, 41, 4% mentioned 

that there is no positive changes and just 10,3% think 

that positive changes are happening. 

Conclusion: The issue of PC provision included in 

Strategy of Health for 2010-2020. Approved the 

National Program “Prevention, diagnostics and 

treatment of malignant growths in RT” for 2010- 

2015. 

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Erroneous Opioid Prescriptions 

Kane P. 1 , Mcquillan R. 1 

1 Beaumont Hospital, Palliative Care, Dublin, Ireland 

Background: Opioids are often recommended by 

the Hospital Palliative Care Teams (PCT). Opioids 

may be prescribed and/or administered incorrectly, 

due perhaps to a lack of education of healthcare 

professionals on their appropriate use. A review of 

opioid prescribing and administration was 

undertaken to ascertain the error frequency 

encountered in a tertiary referral hospital, where the 

PCT has an advisory role. 

Objective: To record the number of opioid 

prescriptions over a two week period for patients in 

whose care the PCT was involved and to note any 

errors in these prescriptions. 

Method: The PCT noted when opioids were 

prescribed and whether there was an error in drug 

dose, legibility, interval or formulation and whether 

the pharmacist had documented the error. 

Results: Sixty-six instances of opioid prescribing 

were recorded with nineteen errors (29%) noted. Of 

these, eleven (16.6% of patients) had an incorrect 

dose prescribed, eight (12%) had an incorrect dose 

interval, three (4.5%) had an incorrect formulation 

and one (1.5%) had an incorrect route of 

administration prescribed. Verbal advice was given in 

twelve (18%) instances; to nursing staff in four (6%) 

instances and to medical staff in eight (12%) 

instances, with written advice given in ten (15%) 

instances. Errors occurred with all opioid 

formulations and routes of administration, with none 

standing out as incurring more erroneous prescribing. 

The pharmacist had noted the error on the drug chart 

in 5 (7.5%) instances. 

Conclusion: Opioid errors occurred in almost a third 

of cases, putting patients at risk. More pharmacy 

resources to review drug prescriptions and more 

education of healthcare professionals are needed to 

both ensure safer prescribing and administration of 

opioids, if this high error rate is to be effectively 

reduced. A repeat audit is planned. 



Systematic Registration of Care Activities - A 

Method to Improve End-of-Life Care 

Martinsson L. 1 , Fürst C.J. 2 , Lundström S. 2 , Nathanaelsson 

L. 1 , Axelsson B. 3 

1 Umeå Universitet, Department of Radiation Sciences, 

Umeå, Sweden, 2 Stockholms Sjukhem Foundation 

and Department of Oncology-Pathology, Karolinska 

Institute, Stockholm, Sweden, 3 Umeå University and 

the FoU Unit, Östersund Hospital, Department of 

Radiation Sciences, Umeå, Östersund, Sweden 

Introduction: The Swedish Register of Palliative 

Care (SRPC) collects data from deaths in all types of 

health care units with the purpose to improve end-oflife 

care for all patients regardless of disease. Data 

collection focuses on medical and nursing activities 

during the last week of life. The aim of this study was 

to examine if merely participation in the register 

could increase end-of-life care quality over time. 

Methods: Data from the 971 health care units that 

had reported their deceased patients to the register 

during a three-year period was compared year by year 

with logistic regression. A total of 25 043 patients were 

included in this study. Subgroup analysis for the 

different health care unit types was performed. 

Results: A number of improvements were seen over 

the examined three-year period. More patients had 

been prescribed as needed medications for pain, 

nausea, anxiety and death rattle. Also, more patients 

died in their place of preference. Next of kin was more 

often informed by a doctor about the impending 

death of the patient and was also more often offered a 

follow-up appointment after the patient’s death. 

“Don’t know”-alternatives were used less frequently. 

Hospital wards without palliative specialization 

showed the least improvement. 

Conclusion: The results indicate that participation 

in the register contributed to quality improvements 

over time in end-of-life care. Palliative care of high 

quality must become a matter of course for all health 

care facilities, especially non-palliative hospital wards, 

to assure all dying patients an optimal care. 

Participating in a palliative quality register is a good 

start, but to achieve true improvements a 

complementary purposeful quality work in the units 

is also required. 

Funding: This study was funded by the Swedish 

Association of Local Authorities and Regions. 



An Evaluation of the Open Society Institute’s 

International Palliative Care Initiative 

Lynch T. 1 , Clark D. 2 , Brice K. 3 , Foley K. 4 , Callaway M. 4 



2 University of Glasgow, Dumfries Campus, School of 

Interdisciplinary Studies, Dumfries, United Kingdom, 

3 Independent Consultant, The Hague, Netherlands, 

4 Open Society Institute, International Palliative Care 

Initiative, New York, NY, United States 

Background: The Open Society Institute (OSI) 

International Palliative Care Initiative (IPCI) was 

formed in 2000, born out of the OSI Project on Death 

in America (PDIA). At the start of the initiative there 

was little systematic understanding of how palliative 

care was developing in a global context. IPCI began by 

identifying key players in countries and regions of the 

world where palliative care activity was not well 

developed and then worked with activists to promote 

global palliative care improvement. 

Aim: To describe the IPCI program since 2000, 

analysing its core components, highlighting lessons 

learned and identifying opportunities for strategic 

development. 

Method: An evaluation was organized around four 

thematic areas: 

1) professional education/training; 

2) organizational capacity building; 

3) policy development; 

4) advocacy. 

The evaluation comprised: meetings with IPCI/OSI 

staff; document review; focus group discussion; key 

informant interviews (n=72); and a workshop around 

the findings. 

Results: 

(i) Several sustainable models in the area of education 

and training have been established including resource 

training centers, ‘train the trainer’ programs, and the 

development of palliative care curricula in 

under/post-graduate medical schools; 

(ii) Capacity development has been broadened 

through IPCI support for organizations/individuals 

that have pioneered palliative care either nationally, 

regionally or globally; 

(iii) Policy relating to drug availability has been 

prioritised and palliative care has been integrated into 

the national health programs of a number of 

countries; 

(iv) Advocacy initiatives have been enhanced through 

awareness-raising activities and increased 

coordination and complimentarity between key 

palliative care players. 

Conclusion: Since 2000, IPCI has accelerated the 

development of palliative care in the regions in which 

it has been involved. In 2010, IPCI continues to be the 

only philanthropic endeavor in palliative care with a 

global reach. 



Outcome Assessment Tools in Palliative Care - 

A Review of the Literature 

Stiel S. 1 , Pastrana T. 1 , Balzer C. 2 , Elsner F. 1 , Ostgathe C. 3 , 

Radbruch L. 4,5 


Medicine, Aachen, Germany, 2 RWTH Aachen 

University, Institute of Hygiene and Environmental 

Medicine, Aachen, Germany, 3 University Hospital 

Erlangen, Divison of Palliative Medicine, Aachen, 

Germany, 4 University Hospital Bonn, Department of 

Palliative Medicine, Bonn, Germany, 5 Malteser 

Hospital Bonn/ Rhein-Sieg, Palliative Care Centre, 

NRW, Germany 

Background: As different definitions for PC have 

been used across the last 3 decades, a common 

terminology is lacking. To ensure quality of care (a) a 

consensus on outcome criteria and (b) validated and 

applicable quality assessment instruments are 

necessary. The aim of this study is to systematically 

survey the instruments for outcome assessment that 

have been used or proposed for research and clinical 

practice in PC. 

Method: A systematic literature search in electronic 

databases from 1950 - 2010 was conducted to identify 

articles describing outcome assessment in palliative 

care. Following extraction of relevant manuscripts the 

instruments were categorized in domains and target 

groups. 

Results: After deduplication and exclusion of 

irrelevant or unavailable titles 725 out of 8607 titles 

were analysed in detail. At least 528 different outcome 

instruments were applied. Four target groups were 

identified: patients, family members, staff members 

and the health care system. Fifteen patient domains 

were identified: quality of life, quality of care, 

symptoms and problems, performance status, 

psychological symptoms, decision-making and 

communication, place of death, stage of disease, 

mortality and survival, distress and wish to die, 

spirituality and personality, disease specific outcomes, 

clinical features, meaning in life, and needs. The 

majority of instruments were found only in single 

cases and a minority of instruments were validated 

and used more often. 

Conclusions: The wide scope of existing 

instruments makes consensus on a universal set of 

instruments for outcome assessment in palliative care 

difficult. To overcome this obstacle maybe an 

international expert consensus may ease the 

definition of a common set of appropriate 

instruments 

(1) to harmonize the variety of tools used in research 

and clinical practise 

(2) to alleviate comparability and 

(3) to define gaps were tools maybe missing and 

should be developed for. 



A Retrospective Audit of Formal Family 

Meetings in a Specialist Palliative Care Unit 

Clifford M. 1 , Rhatigan J. 1 , Richardson M. 1 , Moran S. 1 , 

Mulcahy L. 1 , O’ Neill B. 1 , Sheridan J. 1 , Mainstone P. 1 , 

Conroy M. 1 

1 Milford Care Centre, Limerick, Ireland 

Formal family meetings are a vitally important tool in 

facilitating good communication between staff and 

patients’ families. Therefore, it is imperative that family 

meetings are conducted effectively and efficiently and 

their outcome documented accurately. This 

retrospective audit examines the frequency with which 

family meetings are conducted, pre meeting 

preparation, documentation of the content of the 

meeting, and post meeting follow up. A family meeting 

took place during 34 out of 106 admissions (32.1%) 

over a three month period. Meetings were discussed 

and agreed beforehand with 35.3% of families and a 

mere 8.8% of patients. The patient was invited to 

attend only 11.8% of meetings. A record of preparatory 

staff meetings was lacking (5.9%). A summary of the 

discussion and decisions made during the meeting was 

recorded in 100% of cases but 14.7% of records did not 

state the purpose of the meeting. No post meeting staff 

debriefings were recorded. In only 17.6% of cases it was 

clear that feedback had been given to the patient who 

had not attended. Clearly deficits exist in both practice 

and documentation of family meetings. It is possible 

that documentation of some elements of the pre 

meeting preparatory work and post meeting follow up 

may have taken place but not been documented. A 

working group is currently collaborating with another 

specialist palliative care inpatient unit on a number of 

interventions. These include developing a proforma for 

collective documentation of family meetings 

incorporating checklists/reminders to improve 

practice; written guidelines for when and how to 

conduct a family meeting; written information for 

families prior to attending; and the development of a 

family meeting specific communication skills training 

module for staff. 



Community Based Palliative Care Pain 

Assessment, Aspirations and Reality 

Nash C. 1 , Purcell V. 1 , Mangan M. 1 , Tracey G. 1 

1 Our Lady’s Hospice and Care Services, Dublin, Ireland 

Background: The cornerstone of adequate pain 

management is a thorough patient assessment and 

frequent reassessment. Inadequate pain assessment 

prevents optimal treatment in palliative care. 

Aims and objectives: The aim of this audit was to 

illicit how Palliative Care Clinical Nurse Specialists 

(CNS) rated their pain assessment practice and to 

compare the findings to a pain assessment records 

audit. 

Method: A questionnaire was developed to ascertain 


how the CNS’s rated their pain assessment skills, their 

record keeping skills, and use of the pain assessment 

tool. There was a 76% reply rate. Following the 

questionnaire an audit was carried out on a random 

selection of healthcare records (n=26) looking at 26 

initial visits and 82 subsequent visits. 

Analysis and results: The questionnaires indicated 

that CNS’s were confident in their ability to assess 

pain. There was less confidence indicated around the 

quality of the documentation. 55% felt the available 

pain assessment tool was useful. 76% of CNSs 

indicated that they physically examine the site of pain 

and 54% ask patients to rate their pain using a NRS. 

31% CNS’s felt they record non-physical aspects of 

pain regularly where as 69% sometimes do. From the 

audit, pain assessments were more frequently 

recorded in the narrative rather than on the pain 

assessment tool. Pain assessment was recorded on 

54% of the visits with a physical assessment only 

recorded on 43% of these. It was possible to follow the 

patients’ pain journey in only 31% cases. In 14% of 

cases psychosocial and spiritual issues associated with 

the pain were recorded. There was a disparity between 

the aspirations and the audited reality. 

Recommendations: The use of an appropriate pain 

assessment tool can aid clear recording of pain 

assessment. The audit highlighted that the present 

practice is not represented in the clinical records. The 

plan is to feed back the findings to the team and amend 

the pain assessment tool to make it easier to use. 



Audit into Steroid Prescribing and 

Monitoring in a Hospice Inpatient Unit 

Setting 

Radcliffe C. 1 , Robertson M. 2 

1 West Midlands Palliative Medicine Specialty Training 

Rotation, West Midlands, United Kingdom, 2 General 

Practice Vocational Training Scheme, Warwickshire, 


Background: Steroids are frequently prescribed in 

palliative care where they can be beneficial. 

Variability in dosing regimens and input from 

multiple health care teams means that steroids may 

be prescribed at a higher dose or for a longer duration 

than intended, which has potential to cause harm. 

Aims: To assess steroid prescriptions in a hospice 

inpatient unit, determine the prophylactic measures 

taken against common steroid induced complications 

and assess whether there is a documented plan for 

ongoing steroid use. 

Method: Retrospective case note review of 100 

patients discharged from the hospice in 2010 audited 

against local clinical care guidelines. 

Results: 51 of 100 patients were prescribed steroids. 

92% of steroid prescriptions were commenced prior to 

hospice admission. The indication for steroids was 

documented in 33% at admission. The duration of 

previous steroid use was documented in 41%. GI 

protection was prescribed in 80%, while 14% had 

antifungal prophylaxis and 4% were prescribed a 

bisphosphonate. Blood sugar monitoring was 

performed on only 12% patients on steroids.Only 

21% of patients stayed on the same dose of steroids 

throughout their admission, with 47% having the 

dose reduced in the hospice. Of those patients on 

steroids, 59% died and 41% were discharged. In the 

group who were discharged, only 29% had a clear 

plan documented for future steroid use and none were 

discharged with a steroid card. 

Conclusion: Documentation of the indication for 

steroids and duration of use was poor in this audit. 

Prophylaxis against steroid induced complications 

was variable. Communication with the community 

team on discharge regarding continued steroid use 

was lacking. We suggest further education of the 

multi-disciplinary team to encourage safe prescribing 

and monitoring, the use of a prescribing proforma 

and identification of a lead prescriber. Consideration 

should also be given to the use of steroid cards and 

patient information leaflets. 



An Audit of Current Practice and Management 

of Metastatic Spinal Cord Compression at a 

Regional Cancer Centre in Ireland 

Sui J. 1 , Fleming J.S. 1 , Kehoe M. 2 

1 Waterford Regional Hospital, Palliative Medicine, 

Waterford, Ireland, 2 Waterford Regional Hospital, 

Radiation Oncology, Waterford, Ireland 

Introduction: Metastatic spinal cord compression 

(MSCC) is an oncological emergency requiring 

prompt recognition and management to preserve 

neurological function and mobility. We performed an 

audit to assess current practice and management of 

MSCC at a regional cancer centre in Ireland against 

current best practice as outlined by National Institute 

for Health and Clinical Excellence (NICE). 

Methods: Our retrospective audit identified 10 

patients from January 2009 to December 2009 with 

confirmed MSCC. Patients were excluded if they were 

not in-patients in our centre or those with impending 

spinal cord compression. 

Results: The most common primary tumours were 

prostate (30%), breast (30%) and lung (20%). Pain was 

the main presenting symptom (90%), followed by 

weakness (70%) and sensory changes (10%). 50% had 

MRI within 24 hours and only 60% underwent full 

MRI scan. Corticosteroids were started on 80% before 

MRI scan, with 90% on proton pump inhibitor and all 

had blood sugar checked. 60% received radiotherapy 

within 24 hours. Only 40% were referred to 

orthopaedics and none of these patients had been 

recommended surgery. Up 14 days following 

radiological confirmation of MSCC, we looked into 

patients’ mobility, weakness, pain control and 

discharge location. The number of patients who were 

unable to walk increased by 20% despite 80% 

improvement in pain control and 30% improvement 

in weakness. Only 50% were discharged during this 

period of study. 

Discussion: Our audit reported a number of 

variances in management compared to NICE 

guideline. These can be improved by following a ‘fast 

track’ referral pathway and regular education for 

junior doctors and primary care doctors. 



Management of Malignant Spinal Cord 

Compression in a Specialist Palliative Inpatient 

Unit 

Cronin K.A. 1 , Murphy M. 1 , O’Brien T. 1 

1 Marymount Hospice / St Patrick’s Hospital, Palliative 

Medicine, Cork, Ireland 

Objective: Malignant Spinal Cord Compression 

(MSCC) is defined as spinal cord or cauda equina 

compression by direct pressure and/or induction of 

vertebral collapse/instability by metastatic spread or 

direct extension of malignancy that threatens or 

causes neurological instability. This audit examines 

the management of suspected MSCC in a Specialist 

Palliative Care In-patient Unit comparing it to NICE 

2008 clinical guidelines for MSCC. 

Methods: A retrospective chart review of patients 

with suspected MSCC in Marymount Hospice from 

July 2007 to July 2010 was completed. Data collected 

was: demographic data, site of bone secondaries, 

neurological symptoms, pain, and signs on 

presentation and which prompted MRI, the interval 

of days before MRI completed, dose of 

dexamethasone commenced, and whether MRI 

confirmed MSCC. Treatment post confirmation of 

MSCC was collected as follows: patient information 

given, whether surgical intervention was consider, 

timing of radiotherapy, limitations placed on 

mobility, low molecular weight heparin, assessment 

of skin integrity, bladder/bowel/urinary function, and 

physiotherapy and occupational therapy input. 

Results: Twenty-five patients were investigated for 

suspected MSCC from July 2007-2010. This is an audit 

in progress and comprehensive results of this audit 

and recommendations will be available when 

completed. 



The COPE Palliative Rehabilitation Course - 

An Evolving Course for Patients with their 

Carers 

Burnett J.D. 1 , Blagbrough M.E. 1 , di Castiglione J.A. 2 , Audit 

and Quality Control 

1 Dorothy House Hospice Care, 

Physiotherapy/Occupational Therapy, Bradford on 

Avon, United Kingdom, 2 Dorothy House Hospice 

Care, Projects, Bradford-on-Avon, United Kingdom 

Palliative Rehabilitation aims to “improve the quality 

of survival so that patient lives will be as comfortable 

and productive as possible enabling them to function 

at a minimum level of dependency regardless of life 

expectancy” (Dietz, 1981) 2 years ago at Dorothy 



House we investigated the use of rehabilitation 

processes for our hospice patients. 

We have established a course aimed at maximising life 

for those with any life limiting disease, through 

education, progressive exercise and relaxation. In 

group settings we cared for more than 100 patients 

and 60 carers to date. Groups take place in hospice 

and outreach settings. 

User involvement and continuous evaluation is 

helping the course evolve. Using a multi-disciplinary 

approach (non-pharmacological intervention and 

promotion of self-help strategies) it covers exercise, 

relaxation, breathlessness, fatigue, nutrition, 

spirituality, use of complementary therapies. 

Evolution continues through evaluation of 

- The referral process 

- The assessment process 

- Appropriate patient outcome measuring tools 

- Reflective questionnaires to service users, referrers 

and facilitators. 

Results from clinical audit have shown and can fully 

demonstrate: 

- Attendance levels are variable because of our patient 

group 

- More than 50% (our standard) of patients (range 54- 

89%) improve in one or more aspects of their lives 

- Holistic factors can be measured by use of various 

tools (e.g. the Wheel of Life, Timed Get up and Go) 

- Those with rapidly progressive disease still show 

benefits in doing the course. 

- Patients report the benefit of seeing, via numerical 

data, proof of improvements No-one has reported 

disappointment if a score has diminished. 

- The course enables carers to have realistic 

expectations 

- The benefits of patients and carers attending 

together. 

Such a course is enjoyable and effective. 



Quality of End-of-Life Care in Luxemburg: An 

Evaluation of Physicians’ and Nurses’ 

Attitudes towards a Specific End-of-Life Care 

Pathway in a General Hospital 

Fogen F. 1 , Grandpierre L. 1 , Bour-Kreutz S. 1 

1 Centre Hospitalier Luxembourg, Luxembourg, 

Luxembourg 

Introduction: In 2008, a first evaluation of 

professionals’ attitudes showed several difficulties in 

end-of-life care. A specific pathway, referring to the 

Liverpool Care Pathway, has been offered in 2009 to 

professionals in our hospital. One year later, a reevaluation 

of professionals’ attitudes was done. 

Method: Clinical audit by systematic review of 91 

non-sudden death cases in the first four months of 

2010. 

Results: Our palliative care team was involved in 

82%. End-of-life situations were documented in 54%, 

using heterogeneous terms, and notified by 

physicians in 36%. The specific pathway was only 

used in 13%, but treatments have been changed in 

66% with an increase in prescriptions for analgesics 

and sedatives and a decreased use of antibiotics or 

anticoagulation. Anticipatory medication was found 

for pain (79%), dyspnoea (16%) and terminal 

confusion (42%). Infusion volume was reduced to less 

then 1000 ml per day in 70%. Nursing items like 

mobilization (16%), wound-dressing (27%) and 

every-day shower (21%) were rarely modified. 

Advance directives were not found. 

Discussion: End-of-life situations are rarely 

documented in the charts as what they are, and used 

terms risk may be misunderstood in taking decisions 

in end-of-life situations. The specific pathway was 

poorly used, but treatments are more often modified 

then in 2008. The nursing items in the current care 

plan do probably not reflect the reality, because 

specific palliative care items are actually not available. 

Informations about patients´ advance directives were 

not found. 

Conclusion: The palliative care team is well 

established in our hospital, and provides high quality, 

methodology and humanity in end-of-life care. The 

rarely used pathway shows a certain degree of 

sensitising for changing physicians’ and nurses’ 

attitudes, and the need to develop specific palliative 

end-of-life care items for the nurses care plans. The 

new law about palliative care needs to be presented 

again to professionals and patients. 

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How the Criteria Quality Has Been 

Implemented in the Palliative Care Team’s 

Daily Activity? 

Cabo Domínguez R. 1 , Bonino Timmermann F. 1 , Redondo 

Moralo M.J. 1 , Ruiz Castellano Y. 1 , Díaz Díez F. 1 , Julián 

Caballero M. 1 , Menacho Perera E. 1 , Peinado Clemens R. 1 , 

Sánchez Correas M.A. 1 

1 Servicio Extemeño de Salud, Cuidados Paliativos, 

Badajoz, Spain 

Objective: The quality group from the Regional 

Program of Palliative Care of Extremadura has 

identified the 23 minimum indicators for a support 

team, which was evaluated by the team of Badajoz. 

The aim of that reseach was to know the level of 

achievement of these indicators in our team and give 

a proposal for improvement as a conclusion. 

Materials and method: It is a descriptive and 

retrospective study. In order to achieve this objective, 

23 welfare quality indicators (divided in three groups, 

identification, evaluation and action) were monitored 

to observe degree of performance in the Palliative 

Care Support Team from Badajoz (Spain). 124 clinical 

histories from deceased patients between March and 

Jun of 2010 were studied. Results were showed in the 

team and we agreed for an improvement proposal in 

those indicators we found more difficulties. 

Results: The degree of accomplishment on each 

evaluated indicator was: Anamnesis and exploration 

100%, initial symptoms 98%, monitoring symptoms 

75%, initial pain 92%, pain re-evaluation 71%, initial 

scales 96%, initial psychological evaluation 58%, 

psychological re-evaluation 52%, initial social 

evaluation 74%, social re-evaluation 11%, familiar 

evaluation 96%, main care provider assignment 96%, 

care plan 100%, plan revision 79%, initial therapeutic 

plan 98%, therapeutic plan revision 76%, assistance 

full report 100% and multidisciplinary history 95%. 

Discussion: As proposals for improvement, the team 

considered including the place where the patient is the 

initial evaluation, pay more attention about the need of 

evaluate the patient’s emotional state using in a scale 

from 0 to 10 and include a register whether the patient 

has a living will document, in the clinical history. 



An Audit of, Audits Carried out by Doctors 

over the Last 3 Years in a Hospice, Assessing 

whether the Audit Cycle Was Continuous 

Cleminson A. 1 , O’ Brien T. 1 , Clifford M. 2 

1 Marymount Hospice / St Patrick’s Hospital, cork, 

Ireland, 2 Marymount Hospice / St Patrick’s Hospital, 

Cork, Ireland 

Background: Audit is a mandatory element of 

registrar training in Ireland. Audit is considered good 

practice as a means of evaluating current practice and 

implementing change. Recommended changes need 

to be re-audited to assess the effect of implemented 

change. As Registrars we move jobs regularly so it is 

difficult to complete the cycle. 

Objectives: The aim of this audit is to see if audits are 

being carried out and if the audit cycle is being 

completed. 

Method: This audit looked for evidence of previous 

audits being kept in the hospice as a resource for future 

audits. We then collated a list of 50 hospice doctors 

from the last 3 years. 29 had contact details and 22 

responded to telephone and text contact. Using a 

standardised spreadsheet, the data was collated. The 

information gathered included: had Doctors carried 

out an audit, was it an original audit, were 

recommendations made implemented, was the audit 

repeated, was a copy of the audit stored in the hospice. 

Results: 

Previous Audits available in the hospital: 4 

audits, in paper form none on intranet. 

Population of Doctors: of 50 doctors listed 

29(58%) doctors contact details available, 22(44%) 

responded. 

Audits: 11 audits carried out in total, 6 audits are 

ongoing, 5 are complete. All audits are initial cycle 

audits. 1 of the 5 completed audits resulted in definite 

change in practice, this was re-audited by nursing 

staff, a copy is in the hospice. One audits 

recommendations might yet be implemented and a 

copy of the audit might be available. 4 of the audits 

have not been re-audited. 

Conclusions: Audits are being carried out by 

doctors. Doctors are creating initial audits, but the 

audit cycle is not being carried out. The only re-audit 

occurred with the involvement of other specialities. 

As a result of this audit I would recommend a multi 

disciplinary committee be set up which would 

maintain a computer record of audits and co-ordinate 

audit activity ensuring audit cycle completion. 



Bleeding Risk Stratification in Palliative Care 

Patients on Warfarin for Atrial Fibrillation 

Ngo D. 1 , Lester L. 2 , McQuillian R. 1,2 

1 Beaumont Hospital, Department of Palliative 

Medicine, Dublin, Ireland, 2 St Francis Hospice, 

Dublin, Ireland 

Aims: Warfarin is of proven benefit in reducing the 

risk of stroke and Venous Thromboembolism (VTE) 

associated with atrial fibrillation (AF). The risks of 

warfarin treatment in the context of advanced 

malignancy are greater. Physician perceptions of risk 

benefit are not always reliable. Bleeding risk may be 

over or under-estimated. 

The point prevalence of patients on anticoagulation 

with Warfarin or Low Molecular Weight Heparin 

(LMWH) and Antiplatelet Agents (APA) is assessed. 

To identify patients on Warfarin for AF and assess 

bleeding risk using two validated Bleeding Risk 

Stratification Models (BRSM). 

Methods: The notes of 207 patients of a Specialist 

Palliative Care Service were reviewed. A specific data 

record sheet was developed. For patients with AF 

receiving Warfarin, two validated BRSMs, the 

Outpatients Bleeding Risk Index (OBRI, Beyth 1998) 

and the Contemporary Bleeding Risk Model (CBRM, 

Shireman 2006), were used. Patients were categorized 

into low, intermediate or high risk of bleeding. 

Results: 9/207 (4%) of patients are on Warfarin. 7/9 

for AF and 2/9 for VTE. In patients with AF, the OBRI 

and CBRM show 3/7 patients are considered low risk 

for bleeding and 4/7 intermediate risk. 

The prevalence of patients on LMWH for VTE is 7/207 

(3%). APA are used in 53/207 (26%). 3/53 patients 

receive Aspirin and Clopidogrel. There were no 

patients prescribed Warfarin or LMWH and an APA. 

Conclusion: The decision to discontinue a treatment 

can be more challenging than the decision to 

commence treatment. In patients on Warfarin, with 

advanced malignancy, the risk of significant bleeding 

and the burden to patients and their carers of 

International Normalized Ratio monitoring should be 

acknowledged. The documentation of an 

intermediate or high bleeding risk, using a validated 

stratification model, could aid decision making 

around discontinuation of Warfarin. 



Prescription of Primary Prevention 

Cardiovascular Drugs in the Last Months of 

Life 

Birch E. 1 , Pease N. 2 , Noble S. 3 

1 Royal Gwent Hospital, Palliative Medicine, Newport, 

United Kingdom, 2 Velindre Hospital, Palliative 

Medicine, Cardiff, United Kingdom, 3 Cardiff 

University, Palliative Medicine, Cardiff, United 


Background: Current palliative acre practice 

includes the rationalisation of “non essential” 

medicines as death approaches and may include 

cardiovascular primary prevention medicines such as 

statins, ACE inhibitors and antiplatelet agents . 

Appropriate cessation of such medication allows a 

reduction in the burden of polypharmacy, potential 

drug interactions and side effects for the patient. The 

Gold Standards Framework encourages primary care 

teams to identify patients as they enter the palliative 

stages of their disease and may be used as a trigger for 

rationalisation of medicines. 

Aim: To investigate the number of patients referred 

to the Hospital Specialist Palliative Care Team 

(HSPCT) for supportive and terminal care who were 

receiving primary prevention medication for 

cardiovascular risk factors (hypertension, 

hyperlipidaemia) a month prior to their death. 

Methods: The Health Care Records (HCR) for 

patients with advanced malignant disease and 

documented cardiovascular risk factors were 

retrospectively studied. Patients receiving 

cardiovascular medications for secondary prevention 

or with diabetes were excluded. 

Results: 86 patients were eligible for inclusion, of 

these 27 (31%) were still receiving primary prevention 

CVD medication. Of these 27, 56% had two or more 

primary prevention medications prescribed. As 

primary cardiovascular risk prevention; 28 (33%) 

patients were on antihypertensive medication, 14 

(16%) patients were receiving statins, and 6 (7%) 

patients had aspirin prescribed. Conclusion: Almost 

a third of patients with cardiovascular risk factors are 

still receiving primary prevention cardiovascular 

medications a month prior to their death. 

Consideration to the cessation of primary prevention 

cardiovascular drugs in those with life-limiting 

conditions should be highlighted in terms of benefit 

to and reduction in harm to the patient and also in 

terms of reduction in costs to the Health Service. 



Advanced/ Metastatic Soft Tissue Sarcoma: A 

Retrospective Evaluation of Symptomatology, 

Palliative Care Referrals and Overall Survival 

in a Tertiary Referral Centre 

Gough N. 1 , Ross J.R. 1 , Riley J. 1 , Judson I. 2 

1 Royal Marsden and Royal Brompton NHS 

Foundation Trusts, Palliative Medicine, London, 

United Kingdom, 2 Royal Marsden and Royal 

Brompton NHS Foundation Trusts, Sarcoma, London, 


Background: Soft tissue sarcomas (STS) account for 

1% of adult cancers. In the ‘inoperable’ state, 

palliative chemotherapy is the mainstay of treatment 

but results are often disappointing. Other approaches 

include active surveillance (AS - watch and wait) or 

best supportive treatment (BST). There is limited 

published data on symptom burden or quality of life 

(QoL) in these groups. 

Method/aims: A retrospective analysis of STS deaths 

in 2009. Patients were identified from an established 

STS database and data recorded from electronic/ paper 

notes. 

Results: 81 patients met inclusion/ exclusion 

criteria.At referral 27.2% had locally advanced disease, 

72.8% metastases (commonest site lung).Median 

documented symptoms increased from 2 (Range 0-5) 

before 1st chemotherapy to 3 (1-6) at BST decision. 

Pain, dyspnoea and nausea/vomiting were the 

commonest symptoms.Median OS from 1st / 2nd line 

chemotherapy was 48.6 (3.0 - 200.0) and 42.4 (1.0- 

151.0) weeks respectively. OS for those with a BST 

decision (n=48) was 3.4 (1.4-62.7) weeks and for those 

with an initial AS decision (n=12), 74.9 (6.3 - 172.3) 

weeks.88% were known to a PCT (community or 

hospital). Median time from 1st PCT referral - death: 

15.8 (0.1- 110.3) weeks.67% of patients used a WHO 

Step 3 opioid for pain started a median of 13.9 (0.3 - 

106.3) weeks before death. 30% and 15% were on 

neuropathic and dyspnoea medications 

respectively.Place of death: 40% hospice, 39% 

hospital, 20% home and 1% other. 

Conclusion: STS patients have slowly progressive 

symptoms and limited OS: the level and timing of 

PCT referrals is encouraging. The number of hospital 

deaths may be treatment related or indicate patient 

preference but a high proportion died in hospice 

reflecting high PCT referrals.The short time from BST 

decision - death may suggest decisions could be made 

sooner: earlier PCT involvement may aid this.Given 

the chemo-resistance and limited OS, recording QoL 

data may justify earlier PCT referrals and aid decision 

making. 



An Audit of a Community Based Specialist 

Palliative Care Team’s Practice in Steroid 

Management 

O Farrell T. 1 , Lacey A. 1 , Tracey G. 1 


Ireland 

Background: Steroids are frequently prescribed for 

patients with life limiting diseases to suppress 

inflammation, to treat cerebral oedema, nausea and 

vomiting, pain relief, as anticancer hormone therapy 

and as a general ´tonic´. Unfortunately the many 

undesirable effects of corticosteroids often result in 

morbidity and have a negative impact on quality of 

life. 

Aims and objectives: To identify the practices of a 

community based specialist palliative team (HCT) in 

supporting patients on steroid treatment. 

Method: A retrospective healthcare record audit was 

carried out. There were 240 patients under the care of 


the HCT during the chosen period and 60% of these 

had been prescribed steroids. A third of this cohort 

were audited (n=53). The literature was reviewed and 

an audit tool devised. 

Analysis and results: The audit reviewed the initial 

assessment and subsequent follow up, focusing on the 

recording of the patient’s past steroid history, 

indications for use, and side effects experienced. 

Steroid treatment was most frequently commenced 

by hospital teams (56%). The HCT only initiated 

treatment in 16% of the cases, yet in a third of cases 

they played an active role in managing the treatment. 

In 10% of cases it was impossible to identify who had 

initiated treatment, and in 29% of cases it wasn’t 

possible to identify why treatment had been 

commenced. Hospital teams managed the treatment 

in a third of cases and GP’s in 4%. The risk factors 

identified were audited as were the side effects 

experienced. 

Recommendations: The need was identified for 

clear unambiguous recording of the indications for 

steroid use, the plan of care and a partnership 

approach between hospital, GP and hospice. The 

introduction of a steroid card may assist in achieving 

this. Another important point identifed was that 

patient/carer education around the use of steroids was 

rarely recorded (2%). While in practice, team 

members report educating patients and their carers. 



Advance Care Planning - An Audit 

Nightingale L. 1 , Monsell M. 1 , Buxton K. 1 , Cheung C.-C. 1 

1 University College London Hospital, Palliative 

Medicine, London, United Kingdom 

Introduction: Advance care planning (ACP) allows 

patients to reflect on their values and beliefs, consider 

future treatment preferences and to document their 

wishes. The General Medical Council and Royal 

College of Physicians have published guidelines 

emphasising the importance of ACP. In end of life 

care ACP improves patient and family satisfaction, 

also helping to relieve stress and anxiety in relatives. 

Aims: To assess the degree of ACP taking place in a 

major teaching hospital prior to implementing 

education and training. 

Methods: An audit of 15 adult wards was carried out 

on 15/3/10. By asking the senior nurse in charge on 

each ward the Gold Standards Framework Surprise 

Question (“would you be surprised if this patient died 

in the next 6 months?”) about each patient, we 

selected those for whom the answer was “no”-they 

would not be surprised if the patient died. The notes 

of these patients were then audited to see if any form 

of ACP had occurred. 

Results: 23% of 438 patients were identified as being 

potentially in the last months of life using the 

‘surprise question’. Of these, 9% had a documented 

opportunity to discuss ACP, 6% had documented 

evidence of ACP having occurred, 2% had 

documented evidence of the patient’s preferences for 

place of death and 19% had a valid DNAR (Do Not 

Attempt Resuscitation) decision. In all cases, ACP was 

in the form of written documentation of a discussion 

with the patient rather than a formalised statement of 

preferences or advance decision to refuse treatment. 

Conclusions: In this audit, roughly a quarter of 

hospital inpatients were identified as being 

potentially at the end of life. However the majority of 

these had not been offered ACP. Of those who were, 

most took up the opportunity for discussion. It was 

felt that the hospital inpatient setting can be an 

appropriate place for ACP to take place, and that any 

pre-existing ACP documentation needs to be clearly 

available for review during subsequent 

admissions/follow-up. 



Medication Prescribing and Compliance of 

Administration in a Hospice Setting 

Kathuria B. 1 , Whiriskey C. 1 , O’Reilly M. 1 , Wallace E. 2 , 

Twomey F. 1 , Conroy M. 1 

1 Milford Care Centre, Palliative Medicine, Limerick, 

Ireland, 2 St. Luke’s Hospital, Palliative Medicine, 


Background: Errors in medication prescribing and 

administration can have serious and sometimes fatal 

consequences for patients. The accurate prescribing 

and administration of medications is therefore of 

utmost importance in ensuring patient safety and for 

optimising patient care. 

Objectives: 

1) To audit patients’ medication sheets in an inpatient 

hospice setting to evaluate current practices of 

medication prescribing and administration. 

2) To ensure all medications are prescribed in 

compliance with national and agreed local best 

practices of record keeping and prescription. 

Method: Twenty patients were randomly selected 

from all patients admitted to the hospice during the 

study period (1 st July-31 st December 2009). All 

medications prescribed at the time of the patient’s 

admission to the hospice were included in the audit. 

Results: Twenty medication sheets were included 

which contained 170 medication entries. All (100%) 

of medication sheets had enough information to 

identify each individual patient. Allergies/sensitivities 

were recorded on 19 (95%) of medication sheets. Out 

of these 170 entries, 131 (77%) were generic 

prescriptions only. While 169 (99%) medications 

were signed by the prescriber, only 87% of these 

signatures were clearly identifiable. Twenty-nine 

(17%) medications were not administered by nursing 

staff with no reason being documented in the 

medication sheets for the omissions. 

Conclusions: Our results highlight that staff in the 

hospice are generally good in record keeping. The 

generic prescribing of medications is safer and more 

cost effective and there is definite scope for 

improvement in this regard. Improvements in the 

design of the medication sheets have been suggested 

which we plan to incorporate into the proposed new 

medication sheets. We hope that this audit will 

continue to form part of an ongoing audit and 

continuous quality improvements. 



The Liverpool Care Pathway for the Dying 

Patient (LCP): An Audit of its Use and Impact 

on Care in the Hospice Setting 

Magee C.L. 1 , Thomas C.J. 1 

1 Countess Mountbatten House, Southampton, 


Background: The LCP is an integrated care pathway 

recognised as a best practice model by the 

Department of Health End of Life Care Strategy 2008. 

It was originally developed for the care of cancer 

patients in the acute hospital setting, but has been 

adapted for use across all care settings. It aims to 

improve care of the dying. 

Aims: To audit the use of the pathway in a hospice 

and establish whether it is being considered and 

introduced appropriately, whether prescribing 

practice is influenced by its use and whether 

documentation is adequate. 

Methods: A retrospective case note review of all 

deaths at a hospice over a 2 month period was 

undertaken. Data collected included use of the LCP in 

relation to recognition of dying, rationalisation of 

medication, anticipatory prescribing and completion 

of documentation. 

Results: 58 deaths were identified in the study period 

(52 sets of notes available). 55.8% patients were on 

the LCP at death. The median length of time on the 

LCP was 2 days (range < 1-8). Of those not on the LCP 

43.5% were recognised to be dying, but the LCP was 

not considered. 17.4% were recognised to be dying, 

but did not meet the criteria for use (version 11). 50% 

of patients on the LCP were started on it the same day 

they were recognised to be dying. 100% patients on 

the LCP had inappropriate medications discontinued 

and appropriate drugs converted to the subcutaneous 

route (64.7% and 82.4% in those not on the LCP). 

Anticipatory prescribing was improved when the LCP 

was used. Documentation was variable; spiritual 

needs, communication with GP and care after death 

were particularly poorly completed. 

Conclusions: The LCP is an important guide to the 

delivery of care in the hospice setting. There is scope 

for the LCP to be used in more patients and there is 

often a delay in initiating the LCP after recognition of 

dying. Use of the LCP improves prescribing practice at 

the end of life. Education to improve documentation 

in areas poorly completed is needed. 





A Baseline Review of Prescribing, 

Documentation and Use of Sedation in 3 

Hospice Inpatient Units 

Fleming J. 1 , Henson L. 1 , Jeyakumar J. 1 , Cawley D. 1 

1 Pilgrims Hospice, Ashford, United Kingdom 

Background: Sedation is commonly used in 

palliative medicine. It is an important component in 

symptom management especially when symptoms 

are becoming refractory or other interventions have 

been ineffective. However the use of sedation requires 

good clinical guidance as it has potential risks. A 

review to understand current practice was therefore 

carried out. 

Aim: To conduct a baseline review of the prescribing 

practices of sedative medications within a hospice 

organisation in the South East of England. 

Methods: Case note review of all inpatients admitted 

within a 1 month period in 2010. All data collected 

was by a unified data collection sheet. 

Results: 91 patients were admitted within this period 

across all 3 sites. 79% had a malignant diagnosis and 

61% died on this admission. Pain (57%) and 

dyspnoea (41%) were the most common symptoms 

identified that may have necessitated sedative 

medication. Documentation supporting the 

possibility of potential reversible causes of agitation 

varied considerably across sites. A significant 

proportion of patients were prescribed multiple “as 

needed” (PRN) sedatives with midazolam (93%), 

levomepromazine (84%) and oxazepam (81%) being 

the most commonly prescribed. The documentation 

of PRN sedative medications prescribed varied in 

terms of dosing and frequency. 204 episodes of 

sedative medication administration were identified. 

There was no reason documented for their 

administration in 40% of episodes and no response 

documented in 54%. Documentation was 

significantly better when patients were on the 

Liverpool Care Pathway. 

Conclusion: Prescribing, documentation and use of 

sedation was found to be variable and below the 

standards identified for baseline review. Blanket PRN 

prescribing of sedatives when patients are admitted is 

outdated in the current practice of palliative 

medicine. Development of guidelines on the 

administration of sedative medication aims to 

improve and inform current practice. 

Funding: None 



Audit on Death Rattle (Noisy Breathing at the 

End of Life) and Usage of Anti-secretory 

Medications in an Inpatients’ Hospice 

Subramaniam S. 1 , Uddin K. 1 , Parker G. 2 

1 Hospice in the Weald, Inpatients’ Hospice, Pembury, 

United Kingdom, 2 Hospice in the Weald, Pembury, 


Noisy breathing due to secretions is common in end of 

life care situations. Even though a recent Cochrane 

review by Wee et al (2009 review) concluded that there 

is no evidence to show any intervention was superior 

to placebo, in practice it is hard not to intervene. 

Aim: To evaluate current practice against the local 

guidelines & Association of Palliative Medicine’s 

guidelines on usage of antisecretory medications in 

end of life care. 

Methodology: Retrospective, case notes review of all 

the patients died in the author’s unit (Jan 2010- May 

2010). 

Results: Total number of patents: 73, Antisecretory 

drug needed: 24.Medication Prescribed: 66 patients, 

not prescribed: 7 patients. 

Prescribed doses: Correct doses: 39; Incorrect : 27; 

Not prescribed: 7 (not needed). 

Doses used per patient: Six patients needed 1 dose, 

seven needed 2 doses, eight needed 3 doses, two 

needed 4 doses and one patient needed 5 doses. 21/24 

had response assessed/documented. 3 patients had no 

documentation of assessment. 18/21 patients had 

documented benefit from the antisecretory drug. 

Syringe Driver: Started on 7/24 patients. 16/24 not 

started.1 patient refused. Out of these, 1 was a wrong 

dose (started on 600 mcg of glycopyronnium). 2 

patients potentially should have been started based 

on their prn doses. 2/24 patients had evidence of use 

of re-positioning. No use of suction. 

Communication with patient/family: No 

evidence of documentation of communication found 

(0/24). 

83 


(Thursday)


(Thursday) 


Prognosis from 1 st dose: 16/24 patients died 

within 24 hours. 

Prognosis from start of SD: 5/7 patients died 

within 24 hours of the start. 

Conclusion: In a majority of patients medications 

used appropriately and response assessment 

completed. However, documentation of 

communication, non-pharmacological interventions 

rate need to be improved. The authors recommended 

inclusion of regular teaching sessions to junior 

doctors to improve their awareness and to re-audit in 

two years time. 



**Error Alert!** (Inter and Intra-professional 

Differences in the Idenfication of Analgesic 

Prescription Errors - A Survey of Oncology and 

Palliative Care Patients in a Large Teaching 

Hospital) 

Ubogagu E.A. 1 

1 Imperial College London, Oncology Department, 


Prescription errors are a common cause of medication 

errors in the UK with worldwide concerns amassing 

an important public health focus. Analgesic 

prescription error was amongst the five commonest 

prescription errors identified by Ridley et al in the UK 

critical care setting. Despite vetting by healthcare 

professional groups, adverse events resulting from 

opioid-based prescription error remains a common 

source of medication-error in oncology and palliative 

care patients. 

Aim: To analyse the ability of healthcare professional 

groups (doctors, nurses and pharamcists) to correctly 

identify common analgesic prescription errors 

ranging from basic to serious adverse errors. 

Method: 4 ´survey-marked´ hospital drug charts 

were reviewed by 30 healthcare professionals: 6 

nurses, 18 doctors and 6 pharmacists in a large nonspecialist 

palliative care London teaching hospital. 

Common opioid-based analgesic errors were: basic 

error (chart 1), serious error (chart 2), sub-therapeutic 

error (chart 3) and no error (chart 4). 

Results: The absence of ‘as required’ analgesia on 

chart 1 of the survey drug chart was correctly 

identified by 27% -8 professionals (2 doctors (11%), 2 

nurses (33%), 4 pharmacists (67%) ). 60% - 18 

professionals (10 doctors (56%), 2 nurses (33%), 6 

pharmacists (100%)) spotted the ´low dose (subtherapeutic) 

as required’ error on chart 3. 30 

professionals (100%) correctly identifying the serious 

morphine error on chart 2, and the absence of 

analgesic error on chart 4. However only 70% - 21 

professionals indicated that they would cross off the 

serious morphine prescription error of 10 times the 

regular dose, identify the individual who had made 

the prescription, and complete an incident form. 

Conclusion: A co-ordinated multi-professional 

vetting system involving doctors, nurses and 

pharmacists, is necessary to minimise inter and intraprofessional 

differences in the identification of 

common analgesic prescription errors within this 

vulnerable patient group. 



The Perception of Cancer Pain Control 

Quality at District Oncologists in Republic of 

Moldova 

Pogonet V. 1 , Cernat V. 1 , Gabunia M. 1 , Monul V. 1 , Jovmir 

V. 1 , Cosciug N. 1 , Mindruta R. 1 

1 PMSI Institute of Oncology, Chisinau, Moldova, 

Republic of 

Aims: To determine the opinion of district 

oncologists about pain control level and barriers. 

Introduction: District oncologists are responsible 

for quaternary and annual reports on pain medication 

necessity, consume, requirement and ordering. 

Methods: All the oncologists in each district were 

proposed to respond in written to a questionnaire. 

Results: 

1. How would you appreciate the efficiency of pain 

treatment at your patients during 2009? 

Satisfactory71;Unsatisfactory29; Excellent0 

2. What are 3 the most important causes of under 

treatment of pain at your patients? Answers 52. 

Accessibility42; difficulties to manage strong pain and 

difficult patient condition associated to pain12; 

availability9; late patients’ and caregivers’ address to 

doctors for pain treatment solutions3; dependence3;9 

3. What are the obstacles for adequate pain treatment 

in your activity? Answers 37. 

Low diversity of free analgesics35; no obstacles16; lack 

of knowledge in pain14; lack money for non 

opioids14; absence of beds for pain treatment 5 ; 

4. What are your proposals for pain control improving 

at your patients? Answers 45. 

Sufficient delivery of pain medication 42; free access 

to pain medication and sufficient financing18; 

inpatient facilities for patients in pain+rehabilitation 

11; enhancing of education level in pain 9. 

Conclusions: District oncologists mention 

accessibility as one of the major obstacles that impede 

patients’ successful pain treatment.This is a point 

where the actual available local sources could do a 

major improvement. The frequently mentioned need 

for inpatient facilities that would address patients in 

pain seems to be a sharp problem in Moldova.Health 

care reform has to take into consideration the 

necessity of oncologists to have access to education in 

the field of cancer pain.The relatively high satisfaction 

with pain control level at their patients in a country 

with so many gaps in pain treatment need a better 

understanding of the actual basis for that optimism. 



The Impact of Organisational and Individual 

Factors on Teamwork and Patient Safety in 

Cancer Palliative Surgery: A Qualitative Study 

Barrault M. 1,2 , Gérat-Muller V. 1 , Barthelemy V. 3 , 

Colombani-Claudel S. 4 

1 Institut Bergonié Centre de Lutte Contre le Cancer, 

Unité de Psychologie Clinique, Bordeaux, France, 

2 Université Victor Segalen Bordeaux 2, EA 4139, 

Bordeaux, France, 3 Institut Bergonié Centre de Lutte 

contre le Cancer, Département de Chirurgie, 

Bordeaux, France, 4 Institut Bergonié Centre de Lutte 

contre le Cancer, Département d’Anesthésie- 

Réanimation, Bordeaux, France 

Background: Effective teamwork and 

communication is a crucial determinant of cancer 

advanced patient safety. A healthcare system that 

supports effective teamwork can improve the quality 

of patient care and reduce workload issues that cause 

burnout among healthcare professionals. 

Communication failures are often underpinned by the 

inherent differences in professional practices across 

disciplines, and the ways in which they collaborate. 

Purpose: Understanding organisational and 

individual factors that influence interdisciplinary 

communication and teamwork in cancer palliative 

surgical unit. 

Design: 1 oncologist, 1 surgeon, 1 anesthetist, 2 

nurses, and 2 psychologists was «reflecting team». 

Mixed-methods qualitative/quantitative research 

designs were used. 

Methods: Analysis of 15 clinical cases of highcomplexity 

palliative surgeries: Morbidity and 

Mortality Conferences, medical and nurses notes were 

collecting. 

Analysis of focus group with including surgeons, 

anaesthetists, and nurses from a cancer care surgery 

unit. Thems group interview were mental 

representations about palliative care in surgery and 

interprofessional communication. Reason’s model 

(1993) and the systems analysis of clinical incidents 

(Taylor-Adams & Vincent, 2004) provide the 

conceptual foundations of the investigation and 

analysis process. 

Analysis: Using a combination of inductive and 

deductive approaches, thematic content analysis was 

performed on the qualitative data set and compared 

to quantitative results. 

Results: Analysis identified causal patterns of 

interdisciplinary teamwork practices; 

interdisciplinary diversity in teams contributes to 

complex interpersonal relations, the pervasive 

influence of the organisation on team cohesion, lack 

of education about psychosocial needs of advanced 

cancer patient. This insight presents a critical first step 

towards the development teambuilding interventions 

in that would specifically address communication 

practices in cancer surgery unit. 



Patient and Family Satisfaction in Palliative 

Care 

Amendoeira J. 1 

1 Instituto Politécnico de Santarém, Escola Superior de 

Saúde de Santarém, Santarém, Portugal 

Background: The assessment of quality in health 

care is more often an urgent aim within the different 

care contexts (DGS, 2010). The unit of Palliative Care 

S.B.M, has the mission to orient itself for a full 

assistance to the person with incurable disease, 

developed and progressive, as well as to the 

family/care giver, looking forward to improve his 

quality of live, thus mobilizing technical-scientific 

knowledge, in the sense of a practice based on 

evidence (PBE) (Melnyk & Fineout-Overholt, 2005). 

The PBE is essential to emphasize the centralization of 

the person/family/care giver in the care process, 

where the professional assumes the skills to diagnose, 

plan and do the more adequate intervention, which 

himself controls and evaluates (Amendoeira, 2003). 

Object of study: To evaluate the patient’s or care 

giver satisfaction during internment, after 21days the 

internment and the satisfaction of the family who 

had patients interned over 6 months in the UPC. 

Material and method: The systematic revision of 

literature (SRL) [Pravikoff, D.S., Pierce, S.T., & Tanner, 

A. (2005)] revealed itself as a strategy more adequate 

for the understanding of the phenomena. In this 

sense we searched in the EBSCO (CINAHL 

Plus;Medline; Cochrane; Nursing and Allied Health 

Collection), submitting the following key-words: 

satisfaction, patient, palliative care, measure, family, 

phone and nursing intervention, which we crossed 

successively, using a chronologic fringe of five years 

and a set of limiters. 

Results: The SRL allowed the identification of 17 

articles that enhance to identify a set of variables, 

essentials to the elaboration of a matrix to evaluate 

the clients’ satisfaction in the UPC. The former matrix 

will be submitted by telephone to the clients 

(patient/family/care giver), between 11/2010 and 

1/2011 

Conclusions: From SRL, emerges the consistency of 

the matrix to produce data that will be analyzed in a 

comprehensive and interdisciplinary perspective, and 

presented at congress. 



Management of Hypercalcaemia in a 

Palliative Care Service 

Camilleri M. 1 

1North Shore Hospice, Palliative Care, Auckland, New 

Zealand 

Background: Management of hypercalcaemia in 

palliative care requires a comprehensive approach 

that takes into consideration many factors not least of 

which the wishes of the patient and resources 

available. Guidelines offer a consistent approach 

between palliative care teams. Review of guidelines on 

hypercalcaemia management was undertaken after 

revision of cost and use of bisphosphonates, patient 

admissions for infusions, and blood investigations. 

From this a number of discrepancies emerged 

together with an inconsistent documentation of 

symptoms and outcomes of management. 

Method: Clinical notes of patients treated for 

hypercalcaemia in the year 2008 were retrospectively 

reviewed. Management of these patients was found to 

be loosely based on the guidelines available to the 

organisation. The medical team was challenged to 

review practise, based on the list of patients treated in 

2008. In early 2009 education sessions highlighting 

pathophysiology of calcium metabolism, clinical 

features of hypercalcaemia, related pathologies, 

mechanism of bisphosphonate action and role of 

hydration were delivered. Concurrently prospective 

data from clinical notes of patients treated for 

hypercalcaemia in 2009 was gathered. 

Results: During 2008, 22 infusions of 

bisphosphonates were administered in 12 patients 

with hypercalcaemia. In parallel, guidelines, clinical 

resources and protocols from the literature were 

reviewed. In the first quarter of 2009 the in-patient 

and community teams were issued with new clinical 

guidelines Thereafter 13 infusions of bisphosphonates 

were administered in 27 patients with hypercalcaemia 

as part of the revised protocol. 

Conclusion: Management of hypercalaemia via 

these guidelines was found to be more focused on 

symptom treatment, to be pre-emptive, even 

preventative of potentially distressing situations, 

more cost effective and empowered team/patient the 

choice of management within the home. 




Registering Palliative Care Data in Developing 

Countries: A Need to Improve it in Mexico, 

Venezuela and Panama? 

Buitrago R.E. 1 , Bonilla P. 2 , Holguin-Licón M. 3 , Santana C. 4 

1 Universidad de Panamá, Farmacia Clinica, Panamá, 

Panama, 2 Hospital Nacional de Cáncer, Caracas, 

Venezuela, 3 Cepamex, Mexico, Mexico, 4 Universidad 

de Panamá, Panamá, Panama 

Provision of Palliative Care (PC) is not fully organized 

in developing countries. Differences exist among 

countries in terms of opioid prescription, training in 

PC. In order to increase resources for this activity each 

action/decision taken to provide care for patients 

needing palliative care must be registered in patient’s 

files. 

The aim of this study was to determine if each 

action/decision taken to provide care to patients 

needing palliative care was properly registered in 

three main hospitals located in Mexico, Venezuela 

and Panama. 

A descriptive study was done with a sample of patients 

with diagnosis of cervical uterine cancer in three 

hospitals (Mexico, Venezuela and Panama). Data 

evaluated included: Demographic information, 

Diagnosis, Treatment, Medicines prescribed for the 

treatment of pain (including laxatives and gastric 

mucosa protectors, rescue doses), level of pain 

measured and scale used. 

Consistently Demographic information, diagnosis 

and treatment decisions (Surgery, Radiotherapy and 

chemotherapy) were properly registered in patient’s 

file. Main differences were found in PC Provision. 

Level of pain measured and scale used, rescue dose 

prescribed, laxatives and gastric mucosa protector 

were not consistently registered in patient’s files. 

Additionally, instructions for medicines applied were 

not indicated in all cases and morphine was not 

indicated in all cases that they were required. 

If decisions taken to provide PC are not properly 

registered, resources invested to improve this 

discipline may remain limited. These results indicate 

that there is a need either in improving education of 

health care professionals and/or a need to improve 

registration processes when PC services are provided. 



National Care of the Dying Audit Hospitals 

(NCDAH) - A Useful Tool for Improving Care 

for Patients in the Last Hours or Days of Life 

Mcglinchey T.M. 1 , Mason S. 1 , Gambles M. 1 , Murphy D. 1 , 

Ellershaw J.E. 1 

1 Marie Curie Palliative Care Institute Liverpool, 

University of Liverpool, Liverpool, United Kingdom 

Producing robust, objective data that leads to 

improved care for patients remains a challenge in 

palliative care. The NCDAH, part of a Continuous 

Quality Improvement (CQI) programme in care of the 

dying aims to enhance the quality of care received. 

CQI within the NCDAH uses audit and evaluation 

against nationally adopted standards (Liverpool Care 

Pathway for the Dying Patient - LCP), comparing 

performance across different organisations. The 

NCDAH promotes development of local action plans 

to facilitate improvement in the care of patients in the 

last hours or days of life 

Aim: Illustrate the effects of NCDAH in facilitating 

real change, both at Trust level and the bedside in the 

care of dying patients 

Method: Retrospective audit cycle: organisational 

and clinical (LCP) elements of care in the last hours or 

days of life in hospitals in England (NCDAH Rounds 

1&2, 2007-2009). Regional workshops: close audit 

loop, enable shared learning and action plan for 

improvement. 

Findings: Individual hospitals received a report 

showing their performance against the standards 

(LCP) and against the national benchmark. Data 

driven Key Performance Indicators (KPI) were 

developed and distributed. Participants attended 

workshops to start the process of action planning for 

improvement; both rounds indicated the process was 

useful (94/92%), gave an opportunity to action plan 

for improvement (93/87%) and ultimately alter care 

for dying patients (97/95%). 

Conclusion: The NCDAH enabled organisations 

understand their own level of performance, 

comparative to other hospitals in similar settings. 

Results from workshops show the opportunity to 

reflect on performance in a national context is 

invaluable in promoting CQI in care of the dying. 

KPIs enabled individual hospitals translate salient 

elements of performance in the audit within their 

local Trust Board. Results informed UK government 

guidance on end of life care. Building on the success 

of Rounds 1&2 the NCDAH Round 3 will commence 

in 2011. 



Is the Pen Mightier than the Sword? 

Prescribing PRN ‘as Required’ Medication 

Cawley D. 1 , Marshall J. 1 , Dand P. 1 

1Pilgrims Hospices in the East Kent, Ashford, United 


Background: In the current healthcare climate of 

identification of risks and potential harms to 

safeguard patients and protect doctors, the hospice 

environment has come under closer scrutiny. This is 

on the back of national policy documents purporting 

good and safe clinical practice with medicines 

management and surveillance, However there is a 

paucity of evidence supporting the PRN/ ‘as required’ 

prescribing and also guidance on its’ administration 

along with the appropriate guiding documentation. 

Aim: To identify the prescribing practice of PRN 

drugs within a hospice organisation. 

Methodology: Retrospective snapshot casenote 

review of 3 hospice sites within one organisation in 

South East England. 

Results: 45 patient case notes were identified with 

the majority of patients being admitted for Symptom 

Assessment (35/45). Benzodiazepines are the most 

commonly prescribed medication (96 episodes), 

alongside opioids (90 episodes) and levomepromazine 

(52 episodes). There was inconsistent documentation 

to support ‘indication or use’ (17% (75/288)) with 

significant variations in the dosing and frequency 

intervals for most drugs. This was evident with ranges 

prescribed for opioid prescriptions (79% (71/90)) with 

large opioid dose ranges (56% had greater than 100% 

dose increment). Variability didn’t appear to follow 

drug pharmacokinetics. 

Conclusions/recommendations: Opioids and 

sedative medications are commonly prescribed with 

significant variations in dosing range and frequency. 

Within an organisational clinical governance 

framework, identification and then guidance on 

minimising the potential for error is imperative. A 

PRN ‘as required’ guideline has been developed taking 

account of the significant variations. It suggests that 

we have fixed doses or very small ranges with stated 

frequency matching the pharmacokinetics of a drug 

rather than an arbitrary fixed dosing schedule. This 

enables individualised patient prescribing that 

safeguards patients and protects health professionals. 



Survey of the Introduction of a Palliative Care 

Mobile Team in Two Regional Hospitals in 

Southern Switzerland 

Walther-Veri S. 1 , Pesenti C. 1 , Gamondi C. 1 , Sanna P. 1 , 

Neuenschwander H. 1 

1 IOSI Oncology Institute of Southern Switzerland, 

Palliative Care Service (PCS), Bellinzona, Switzerland 

Aim: To evaluate nurses and physicians’ satisfaction 

18 months after the introduction of a bi-weekly 

Palliative Care (PC) interdisciplinary mobile team in 

two regional hospitals (Faido and Acquarossa) 

included in the Ente Ospedaliero Cantonale (EOC) in 

Southern Switzerland, as an extension of an already 

existing service. 

Methods: After literature review a duly created 

questionnaire, including demographic data a mixture 

of open and closed questions, with a Six Point Likert 

rating scale, focused on 3 main areas of interest 

(Clinical consultation, Bed side teaching, Type and 

modality of consultation) was directly sent to the 

health care staff. Some open space was left for free 

comments. All data have been elaborated with a Excel 

sheet. 

Results: Of 84 mailed questionnaires, 54 returned 

completed (65.5% of response rate) and were 

analyzed. Regarding clinical advice the interviewed 

reported high degree of satisfaction in the symptom 

evaluation (46/54-Likert Scale 4-6) and in the in the 

psychosocial evaluation during the consultation 

(45/54-Likert Scale 4-6). In teaching, coaching and 

comprehensive information interviewed resulted very 

satisfied for the timeliness (50/54-Likert Scale 4-6) and 



the modality (50/54-Likert Scale 4-6) of the 

consultations. High need for further teaching in the 

use of symptom assessment tools emerged from the 

survey. The PCS has been identified as an important 

support and as a reference for debriefing in complex 

palliative care situations. 

Conclusion: Results shows that the survey was 

feasible and well accepted by the staff. Teams reported 

global positive feedback, consistent with the mobile 

team perception. Emerging points of service 

improvement are: the recognition of the mobile team 

as a key carrier of information in patients transfers 

and a tight collaboration in basic palliative care 

education. 



Bisphosphonate Usage in a Specialist 

Palliative Care In-patient Unit 

Cronin K.A. 1 , Conroy M. 1 

1Milford Care Centre, Palliative Medicine, Limerick, 

Ireland 

Objective: Bisphosphonates are given in a Specialist 

Palliative unit to treat hypercalcaemia and reduce 

skeletal events and bone pain secondary to metastatic 

bony disease. The purpose was to examine 

administration practice of bisphosphonates in the 

Specialist Palliative In-Patient Unit in the view of 

comparing it to standard practice. 

Methods: A retrospective chart review of patients 

admitted from January to March 2009 was completed 

using American Society of Clinical Oncology 

guidelines for bisphosphonate treatment . 

Examination of the patient’s chart looked at 

demographic data, the indication and duration of 

treatment, the type of bisphosphonate given, and side 

effects secondary to treatment. Blood indices 

especially Glomerular Filtrate Rate (GFR), dose 

adjustment based on GFR, timing of hydration, dental 

health, and concurrent nephrotoxic medications 

were recorded. 

Results: One hundred and six charts were reviewed 

and 20 patients received a bisphosphonate. The 

division of cancers seen were: 30% breast, 25% 

prostate, 25% other cancers, 10% GIT, 5% Multiple 

Myeloma, and 5% lung. Seventy-five percent of the 

patients had bone metastases. Reason for 

administration was emergency treatment for 

hypercalcaemia 45% (9/20), reduction of skeletal 

events 40% (8/20), bone pain10% (2/20), and 

indeterminate 5% (1/20). Zoledronic Acid was given 

85% of the time and the mean duration of treatment 

for patients receiving the drug for bone pain or 

reduction of skeletal events was 13.9 months. GFR 

and dose adjustments based on this occurred rarely. 

Pre-hydration prior to administration for 

hypercalcaemia was done in 10% (2/20) of patients. 

Questioning of dental health occurred with one 

patient and dental reviews were sought for 2of 10 

patients receiving regular bisphosphonates. 

Conclusion: Bisphosphonate administration needs 

to improve to ensure safe practice. Clinical guidelines 

and a bisphosphonate administration record have 

been developed to address this. 



An Audit on the Workings of the Cancer 

Hotline 

Begum M.N. 1 , Bhaskar A. 2 , Hornby K. 3 

1 University of Manchester, Medical School, 

Manchester, United Kingdom, 2 The Christie NHS 

Foundation Trust, Palliative Care, Critical Care, 

Manchester, United Kingdom, 3 The Christie NHS 

Foundation Trust, Oncology, Manchester, United 


It is estimated that more than one in three of the 

population will suffer the consequence of cancer. The 

cancer hospital, where the audit was conducted, 

provides services including chemotherapy, 

radiotherapy, surgery, palliative and supportive care. 

A dedicated team of specialist oncology nurses 

provide advice on the management of palliative care, 

symptom management and acute oncology problems 

to patients, carers and healthcare professionals, from 

one designated base. This is the cancer hospital 

hotline. 

The aim of the audit was to analyse each aspect of a 

hotline call, for a years worth of data, to provide a 

baseline of how the hotline is working. A total of 9013 

calls were taken. This is the first time a large scale audit 

85 


(Thursday)


(Thursday) 


like this has been conducted. The hotline nurse input 

the call details onto the computer. The data was then 

collated onto a single database and each field was 

analysed. 

It was found the majority of calls were taken during 

working hours, from the female population, whose 

mean age was 60, with queries predominantly from 

patients with breast and bowel cancer. A large 

proportion of callers rang with concerns regarding the 

side effects of the drug Capecitabine. These inquiries 

were analysed in detail. 

The hotline is essential in managing patient queries 

and adjusting their treatment due to side effects. The 

main role of the hotline is to reduce unnecessary 

hospital admissions and ensure urgent care is 

provided in a timely manner. This can be emulated in 

other cancer hospitals as the audit results demonstrate 

that without the hotline, thousands of extra patients 

would be visiting the cancer hospital each year. 

No funding was required for this audit. 



Quality Indicators Measurement in the 

Merida´s Support Palliative Care Team 

(Extremadura Regional Palliative Care 

Program (ERPCP) 

Martin Fuentes de la Rosa M.D.l.A. 1 , Hernández García 

P. 1 , Blanco Toro L. 1 , Blanco Guerrero M. 1 , González 

Cañamero P. 1 

1 Servicio Extremeño de Salud, Palliative Care Team of 

Merida, Mérida, Spain 

Background: The Palliative Care Team (PCT) 

Members motivation and participation to set up the 

quality objectives is basic to develop continuous 

improvement plans in patients and relatives 

assistance, and also to increase the professional´s 

satisfaction. 

Aim: To get the results after evaluating the quality 

indicators of the ERPCP in Mérida´s Area. 

Methods: Medical Reports of patients who left the 

ERPCP in Mérida´s Area from January 1 st to October 

21 st were evaluated.The Quality indicators in the 

ambit of attention, evaluation and action used, were 

previously developed and agreed by the Quality 

Group of the ERPCP. 

Results: 174 Medical Reports were evaluated: 

Indicators in the ambit of Attention: 70% of patients 

were seen at home and 30% in the hospital. In 94% 

the delay in the first visit was in the allowed rank. 64% 

of patients stayed more than 15 days in the ERPCP in 

Merida´s Area· 

Indicators in the ambit of Evaluation: A high 

achievement in this ambit was founded related to the 

first t visit (95-99%). But in the reappraisal the 

percentage turned into 61%. 

Indicators in the ambit of Action: The achievement in 

the first visit was estimated around 90% focusing on 

the existence of a care and therapeutic plan and 

turned into 62% in the reappraisal. A complete 

assistance report was founded just in 26% of the 

medical reports evaluated. A multidisciplinary (PhD, 

Nurse, Psychologist) medical report was completed in 

97% of the cases. 

Conclusions: After having analysed the results by 

the PCT Members (2 PhD, 2 Nurses, 1 Psychologist 

and 1 Social Worker), it is suggested the development 

of an improvement plan and also to establish the new 

objectives for 2011, so the excellence could be 

reached.The need for measurement instruments to 

know the professional´s satisfaction it is also 

suggested. Mainly in this case in which every member 

of the PCT is proportionally involved in a continuous 

improvement of quality. 



The Use of Transdermal Fentanyl Patches in 

Patients on the Liverpool Care Pathway (LCP) 

or Equivalent Tool 

Morgan H. 1 , MacPherson A. 2 , Lieth M. 3 , Waterman D. 4 , 

Twomey F. 5 , North West Audit Group 

1 Christie NHS Foundation Trust, Manchester, United 

Kingdom, 2 North West Deanery, Manchester, United 

Kingdom, 3 Royal Bolton Hospital NHS Foundation 

Trust, Bolton, United Kingdom, 4 Stockport NHS 

Foundation Trust, Manchester, United Kingdom, 

5 Central Manchester University Hospitals NHS 

Foundation Trust, Manchester, United Kingdom 

Background: 

Transdermal fentanyl available since early 1990s, 

effective in chronic cancer pain. 

Not first-line analgesic and lack of confidence in use, 

particularly at end of life. 

Various guidelines produced around use of fentanyl - 

all recommend patches continue at the end-of-life. 

Aim: To assess the use of transdermal fentanyl 

patches for pain control in patients who have been 

commenced on the Liverpool Care Pathway for the 

Dying Patient (LCP). 

Methodology: 

Retrospective, multi-centre regional case-note audit of 

patients prescribed transdermal fentanyl and started 

on LCP or equivalent tool 

Data collected 19/10/09 - 31/01/10 

Data analysed centrally and results disseminated May 

2010 

Results: 20 organisations took part and 148 

proformas were returned: 63% proformas from 

hospice setting, 25% from hospital and 10% from the 

community setting. 

Standards: 

Continue the fentanyl patch 147/148 (99%) 

Continue to change the patch as before 131 / 144 

(91%) 

Prescribe an appropriate dose of breakthrough 

analgesia 113 / 142 (79%) 

Start a syringe driver if multiple breakthrough doses 

needed 80 / 92 (87%)* 

Adjust breakthrough dose if syringe driver added 57 / 

80 (71%) + 

Adjust breakthrough dose if dose in syringe driver 

altered 21 / 32 (66%) 

Conclusion: 

Fentanyl patch continued in the majority when LCP 

started 

Most had PRN opioid prescribed, but only correct in 

79% 

Syringe driver started when indicated in 86% 

If syringe driver started, breakthrough dose correct in 

71% - falls 

If syringe driver opioid changed, breakthrough dose 

correct in 66% - falls again 

At all stages, when breakthrough dose incorrect it was 

usually too low 

Recommend that organisations ensure 

appropriate dose of PRN opioid for patients 

on the LCP and prescribed transdermal 

fentanyl, when LCP started and if regular 

additional opioid added or changed. 




Audit on Inpatient Bed Transfers of Patients 

Referred to Specialist Palliative Care in Our 

Lady of Lourdes Hospital 

Howard M. 1 

1 Our Lady of Lourdes Hospital, Palliative Care, 

Drogheda, Ireland 

Background: There had been a number of 

complaints made to our team in the period July 2009- 

Dec 2009 by patients and families who had been 

moved from bed to bed around Our Lady of Lourdes 

Hospital during their inpatient stay, and who had the 

Specialist Palliative Care service involved in their care. 

Objective: In Our Lady of Lourdes Hospital, 

Drogheda we conducted an audit on inpatient 

transfers in an acute hospital over a six month period 

on patients who had been referred to our service. 

Method: We collected data using the computerized 

inpatient management system (IPMS) on 131 patients 

with Palliative needs from July 2009 to Dec 2009 who 

had been referred to our service. Data on name, ward 

admitted to, length of stay, no of bed transfers, 

patient outcome (?RIP/?discharge), discharge 

location, place of death (single room or shared ward), 

presence of infection (eg MRSA/Cdiff), 

malignant/non-malignant diagnosis. The data was 

entered into a Microsoft Excel spreadsheet. 

Results: The ideal number of transfers for someone 

admitted to the hospital was felt to be ≤2 (i.e. bed 

transfer from Casualty/OPD to the ward, bed transfer 

from ward to single room if required). We saw 131 

patients during that period, and the average number 

of transfers was 2.8 transfers per patient. Of all 

patients seen (n=131), 19 patients had ≥5 transfers. 

The maximum number of bed transfers for any one 

patient during their stay was 19. 

Conclusions: The number of inpatient bed transfers 

for patients known to the Palliative Medicine service 

was unacceptable high in many cases over that 

period. 



Fentanyl Prescribing in an Acute Hospital 

Setting: A Review of the Current Practice 

O’Connor B. 1 , Hayes D. 1 , Murray G. 1 , Creedon B. 1 , Walls 

E. 1 , Fleming J. 1 

1 Waterford Regional Hospital, Department of 

Palliative Medicine, Waterford, Ireland 

Background: Fentanyl is a strong opioid analgesic. 

It is licenced for the management of malignant and 

non-malignant chronic pain. It is recommended that 

it is prescribed in patients who have previously 

tolerated treatment with opioid analgesics as it is 

known to cause a wide range of serious side-effects in 

opioid-naive patients, including respiratory 

depression. The Irish Medicines Board recently 

published recommendations for safe and appropriate 

use of fentanyl after conducting a review of global 

data which documented severe life-threatening 

adverse reactions and death from fentanyl overdose. 

Two contributing factors identified were dosing 

errors, and inappropriate prescribing including 

prescribing in unlicenced indications and in opioidnaive 

patients. 

Aims: 

1. Assess the appropriateness and safety of prescribing 

of fentanyl patches in acute hospital in-patients. 

2. Demonstrate if it is being prescribed and adjusted 

according to manufacturer guidelines. 

3. Conduct a brief review of staff knowledge of the 

medication they are prescribing/ administering. 

Methods: The study consists of two parts. The first 

part involves a prospective review of all patients 

prescribed fentanyl patches over a three month 

period from October to December 2010. Observations 

include the indication for prescribing fentanyl, the 

dose prescribed and its adjustment over the course of 

the admission. 

The second part involves a brief questionnaire to 

hospital staff prescribing/ administering fentanyl 

patches (medical, nursing and pharmacy). This 

consists of one question which examines their 

awareness of the morphine dose equivalent of one 

sample strength of fentanyl patch. 

Results: Awaited- study in progress. 

Conclusions: Transdermal fentanyl is a useful opioid 

agonist whose advantages include ease of 

administration. Its incorrect use can lead to clinically 

significant consequences. Ongoing education is 

critical to ensure it is prescribed appropriately and 

safely. 



A Questionnaire to Establish what Exercise 

Programmes Are Available to Palliative Care 

Patients in Ireland and the UK 

Cahill F. 1 , Mc Girr L. 1 , Mc Quillan R. 2 

1 St. Francis Hospice, Physiotherapy Department, 

Dublin, Ireland, 2 St. Francis Hospice, Dublin, Ireland 

Purpose: To establish if exercise programmes are 

available to Palliative Care (PC) patients and how they 

are structured and evaluated. 

Relevance: Physiotherapy plays a vital role in the 

rehabilitation and palliation of symptoms in PC. 

Evidence suggests that exercise programmes tailored 

to the individual are feasible and an appropriately 

adapted group exercise programme may enhance 

psychological wellbeing. 

Participants: Physiotherapists working in PC 

Methods: Questionnaire completed via an on-line 

survey provider. The link was sent out via Chartered 

Physiotherapists in Oncology and Palliative Care 

special interest group in Ireland and the UK and 

reminder was also placed in the Hospice UK Online 

newsletter. 

Results: 40 completed the survey in full. All provided 

exercise programmes to individual patients. 25 

(62.5%) organisations ran ‘group’ exercise classes of 

which there were 19 ‘general’, 7 ‘Fatigue’ and 4 

‘Respiratory’. 22 organisations reported using 

outcome measures (OM) but of these, only 11 (50%) 

used validated OM. 8 organisations reported running 

groups in conjunction with other disciplines such as 

occupational therapists or clinical nurse specialists. 

Analysis: This is a preliminary study. All respondents 

included exercise as a treatment option; no comment 

can be made on those who did not complete the 

survey. Groups run in conjunction with other 

disciplines for the palliation of symptoms such as 

dyspnoea and fatigue, appear to be well structured 

and evaluated. ‘General’ exercise groups tend to be 


un in a Hospice Day Care setting and appear less 

structured and poorly evaluated. 

Conclusion: There is evidence of exercise being used 

as a treatment option in PC. There is no consensus of 

OM in PC and they are poorly used to evaluate the 

effect of exercise in PC. Inter-disciplinary groups are 

more likely to be structured and use validated OM. 



Genome-wide Association Identifies Multiple 

Loci Modulating Opioid Therapy Response for 


Galvan A. 1 , Skorpen F. 2 , Klepstad P. 2 , Knudsen A.K. 2 , 

Fladvad T. 2 , Falvella F.S. 1 , Pigni A. 1 , Brunelli C. 1 , Caraceni 

A. 1 , Kaasa S. 2 , Dragani T.A. 1 

1 Fondazione IRCCS Istituto Nazionale Tumori, Milan, 

Italy, 2 Norwegian University of Science and 

Technology, Trondheim, Norway 

Background: We tested the hypothesis that genetic 

variations may control individual pain relief in 

response to opioid drugs in patients treated for cancer 

pain. 

Methods: We tested one million SNPs in European 

cancer patients selected in a first series for extremely 

poor (pain relief ≤40%; n=145) or good (pain relief 

≥90%; n=293) responses to opioid therapy and 

candidate SNPs identified by SNP-array were 

genotyped in a total of 1008 individual samples. 

Results: Association analysis in 1008 cancer patients 

identified 19 SNPs statistically associated with pain 

relief, with rs12948783, upstream of the RHBDF2 

gene, showing the best statistical association (P = 1.2 x 

10 -8 ). Altogether, these SNPs defined a genetic profile 

that explained 14% of the phenotypic variation in 

pain relief. Functional annotation analysis of SNPstagged 

genes suggested the involvement of genes 

acting on neurological system processes. 

Conclusions: Our results indicate that the identified 

SNP panel can modulate the response of cancer 

patients to opioid therapy and may provide a new 

tool for personalized therapy of cancer pain. 



Significant Pain Relief with Loading Dose 

Zoledronic Acid in Bone Metastases, Is Only 

Seen in Patients with Elevated Initial Serum C 

Telopeptide (CTx) 

Masfrancx D. 1 , Geurs F.J. 1 , De Koninck J. 1 , De Vos V. 1 , 

Horlait M. 1 , Deprest Y. 2 

1 Regionaal Ziekenhuis Sint Maria, Palliative Care, 

Halle, Belgium, 2 Regionaal Ziekenhuis Sint Maria, 

Clinical Biochemistry Laboratory, Halle, Belgium 

Aim: Recent publications 1,2,3 drew attention to the 

analgesic effect of loading dose of ibandronate. The 

analgesic effect of loading dose Zoledronic acid 

(ZOMETA) is not as well documented and predictive 

biochemical markers for its analgesic effect are 

enterily lacking. 

Methods: Patients with painful bone metastases 

requiring analgesics, were treated with loading dose 

zoledronic acid ( 4mg/day on 4 subsequent days). VAS 

score and analgesic consumption were evaluated . C 

telopeptide at baseline and on day 5 were evaluated. 

Patients: 24 patients were treated from 10/2009 to 

10/2010. All patients had diffuse bone metastases and 

severe pain (VAS > 4); initially even resistant to 

opioids. Median age 77 (range 66-88). Tumor types: 

prostate 4, lymphoma 2, myeloma 4, breast 2, lung 6, 

bladder 4, kidney 2. VAS evaluation was done prior to 

bisphosphonate administration and on day 4 (24 

hours after the last administration) serum CTx was 

determined at start of treatment and at day 5. 

Results: Median VAS dropped from 8/10 to 3/10 after 

administration of ZOMETA. This effect was seen 

across tumor types, and also in sites of prior 

irradiation. There were no side effects noted, nor 

subsequent renal function deterioration. Best 

analgesia was seen in patients with elevated CTx (> 

400) initially, in all these responding patients CTx 

dropped well below normal baseline (< 220).The 2 

patients with normal CTx had no analgesic effect of 

this administration nor decrease of CTx. 

Conclusion: In symptomatic bone metastases with 

significant pain, refractory to standard analgesics and 

radiotherapy, loading dose ZOMETA represents a 

simple and non toxic treatment to obtain significant 

pain relief in a very short time. Its analgesic effect is 

limited to patients with massive osteoclast activation 

cq. high initial serum CTX. 

References: 

1. Mancini I, Body JJ; JCO 2004; 22; 3587- 92 

2. Heidenreich Eur J Cancer 2003; S270-273 

3. Ohlman Supportive Care Cancer 2002,11; 396 



Effect of Morphine and Fentanyl on Adaptive 

Immune Potential 

Boland J. 1,2 , Foulds G. 2 , Ahmedzai S.H. 1 , Pockley A.G. 2 


Care, Sheffield, United Kingdom, 2 University of 

Sheffield, Immunobiology Research Unit, Sheffield, 


Opioids, such as morphine and fentanyl, are strong 

analgesic drugs that are commonly used in the 

management of moderate to severe pain, including in 

patients with cancer pain and those with severe 

infections. Although the literature is mixed, previous 

in vitro and in vivo animal studies have indicated that 

some opioids may suppress immune function, 

whereas others maybe immunostimulatory or 

immunoneutral. The immune system plays a crucial 

role in the control of cancer and infection, and so 

anything which adversely influences its functional 

capacity might thus alter the clinical outcome of 

patients. 

This study assessed the in vitro effects of morphine and 

fentanyl on a measure of adaptive immune potential 

(responsiveness of CD4 + and CD8 + to stimulation). 

CD4 + T lymphocytes are critical in coordinating the 

immune response, to ensure directed activation of 

other immune cells against harmful targets, while 

minimising host damage. CD8 + T lymphocytes play a 

key role in the killing of tumour cells and virally 

infected cells. 

Mononuclear cells were isolated from the peripheral 

blood of healthy volunteers and cultured for 3 days 

with anti-CD3 and CD28 monoclonal antibody 

coated beads in the presence or absence of 

pharmacological concentrations of morphine and 

fentanyl. Bead-triggered activation mimics the 

responses that are induced by antigen presenting 

cells. T cell activation (CD69, CD25 expression) was 

then determined using flow cytometry. 

Although bead activation induced a pronounced 

increased in the proportion of CD4 + and CD8 + T cells 

that expressed CD25 and CD69, and also the intensity 

of the expression, neither opioid had any effect on 

these parameters. Previously reported effects of 

morphine and fentanyl on the activation status of T 

cells might therefore be dependent on the 

experimental system used. Further in vitro and in vivo 

studies are therefore needed before firm assumptions 

about the immunological impact of opioid choice in 

different patient groups can be made. 


Withdrawn 



The Relationship between Systemic 

Inflammation and Severity of Symptoms in 

Patients with Advanced Cancer: A Prospective 

Study 

Haworth G. 1 , Rush R. 2 , Laird B. 1 , Fallon M. 1 

1 Saint Margaret of Scotland Hospice, Palliative 

Medicine, Glasgow, United Kingdom, 2 Queen 

Margaret University, Statistics, Edinburgh, United 


Aim: Pain, depression and fatigue and vomiting are 

common symptoms in cancer and can cause 

significant physical and psychological distress.In nonmalignant 

conditions,systemic inflammation is 

implicated in the genesis of these symptoms. The 

relationship between inflammation and these 

symptoms in cancer is less clear. The aim of this study 

was to examine the relationship of systemic 

inflammation and pain, fatigue, depression and 

nausea/vomiting in cancer. 

Methods: An observational, cross- sectional study 

was conducted in a Specialist Palliative Care Unit.All 

cancer patients admitted over a 4 month period were 

assessed. Eligible patients had inflammatory 

biomarkers of C-reactive protein(CRP) and albumin 

measured and symptoms assessed using the 

Edmonton Symptom Assessment System(ESAS). 

Bivariate statistical analysis was conducted. 

Results: 64 patients were assessed with 50 being 



eligible.Significant correlations (Spearman rho) were 

found for pain (0.343,p=0.015) and depression 

(0.357,p=0.011) with CRP. No significant correlations 

were found for fatigue (-0.020,p=0.890) and 

vomiting/nausea(0.276,p=0.052) with CRP. No 

significant correlations were found for any symptom 

and albumin. 

Conclusion: Systemic inflammation may be related 

to pain and depression in cancer. Such a relationship 

may provide a therapeutic opportunity for specific 

anti-inflammatory therapy to improve these 

symptoms. Further work to examine these 

relationships would be of interest. 



Management of Cultural Diversity at the End 

of Life: About a Case 

Garcia Navarro E.B. 1,2 , Perez Espina R. 3 , Garcia Navarro 

S. 2,4 , Ortega Galan A. 2,5 , Araujo Franco M. 6 , Diaz Santos 

M. 6 

1 Hospital Juan Ramon Jimenez, Unidad de Sueño, 

Huelva, Spain, 2 Universidad de Huelva, 

Departamento de Enfermeria, Huelva, Spain, 

3 Hospital Vazquez Diaz, Cuidados Paliativos, Huelva, 

Spain, 4 Distrito Sanitario Huelva-Costa, Coordinadora 

Cuidados Paliativos, Huelva, Spain, 5 Hospital Juan 

Ramon Jimenez, Hospital de Dia, Huelva, Spain, 

6 Fellow Research Project: The End of Life. Perception 

of Stakeholders, Huelva, Spain 

Introduction: Death is an idea built by society. 

Every culture has a coherent vision that try to explain 

and give meaning to the chaos that, at the end, death 

represents. Assistance to the dying and his relatives 

given by the health team needs a comprehensive 

knowledge of the terminal disease and its influence 

on the actors involved in the process. Therefore, 

highly relevant regain the feelings of the main 

element in that process: the dying. Coping with that 

living experience depends largely on the culture the 

person come from and the cultural weight that has 

the fact of death in it, although personal perception is 

associated with traditions and shares a single 

component related to his own experiences when 

planning the last days (Project funded by Andalusian 

government. PI 0204/2008). 

Target: Knowing and understanding the perception, 

how is the suffering of the terminally ill patient and 

how culture is crucial in the development of the 

disease. 

Methodology: Qualitative descriptive study of 

phenomenological character. 

Population under study: Ill patients from other 

cultures who are included in the process of palliative 

cares. 

Data collection and analysis: The data collection 

is performing using in depth-interviews and the 

selection of participants will be made through a 

purposive sampling. The numbers of interviews 

needed is established by the criterion of saturation of 

information and the content analysis of speeches of 

the interviews will be done according to the method 

of Taylor-Bogdan. 

Results/conclusions: People coming from other 

cultures suffer the social phenomenon of the 

difference in the final stretch of their lives due to the 

way they understand death is not consistent with 

western culture. Death is not managed through 

diversity but subject to prevailing social mores. This 

research shows the need to respect those different 

attitudes towards death, achieving, that way, cultural 

competence in the field of palliative care. 



Vitamin D Deficiency in Advanced Cancer; 

The Prevalence and its Relevance 

Stone C.A. 1 , Lawlor P.G. 2 , Healy M. 3 , Walsh J.B. 4 , Kenny 

R.A. 4 




Ottawa, ON, Canada, 3 St James Hospital, Biochemisty 

Department, Dublin, Ireland, 4 Trinity College Dublin, 

Department of Gerontology, Dublin, Ireland 

Background: Vitamin D deficiency, defined as 

serum concentrations of < 50nmol/L is common in 

healthy populations; the mean vitamin D of 33,000 

healthy subjects worldwide, included in a metaanalysis 

was 54nmol/L. Human production of the 

active form of vitamin D (1,25-hydroxyvitamin D) is 

87 


(Thursday)


(Thursday) 


influenced by exposure to UVB light, age, skin 

pigmentation, dietary intake of oily fish or its 

products and genetic variation. In addition to its role 

in bone health, vitamin D has been shown to be 

important for muscle strength and function and falls 

prevention in older persons; serum concentrations of 

90-100nmol/L are associated with optimal lower limb 

function. We describe the prevalence of vitamin D 

deficiency in patients recruited consecutively to a 

study of the risk factors for falls in patients with 


Methods: Patients admitted consecutively to a 

palliative care inpatient unit who were independently 

mobile and participated in a prospective study of the 

risk factors for falls in advanced cancer had blood 

taken for vitamin D assay. All patients had a diagnosis 

of metastatic or loco-regionally advanced cancer. 

Results: Serum vitamin D levels were determined for 

31 patients, 16 were male and 3 were taking vitamin D 

supplements. Mean serum vitamin D was 26.69(± 

19.41)nmol/L, 27/31 (87%) had vitamin D deficiency. 

There was no correlation between serum vitamin D 

concentration and age (r = 0.072, p = 0.7). 

Conclusions: The majority of participants had 

vitamin D deficiency and all had serum 

concentrations below that required for optimal 

muscle functioning. Further research is required, to 

identify the prevalence of vitamin D deficiency in 

well defined cohorts of patients with cancer, to 

identify protocols for safe and effective repletion of 

vitamin D in patients with cancer and to assess the 

clinical impact of repletion on muscle function, pain 

and falls. 

Funded by the Irish Hospice Foundation and Health 

Research Board 



Prospective Study of the Prevalence and 

Prognostic Utility of Autonomic Dysfunction 

in Ambulant Patients with Advanced Cancer 

Stone C.A. 1 , Nolan B. 1 , Kenny R.A. 2 , Lawlor P.G. 3 


Research Department, Dublin, Ireland, 2 Trinity 

College Dublin, Department of Gerontology, Dublin, 

Ireland, 3 Bruyere Continuing Care Unit, Palliative 

Care Department, Ottawa, ON, Canada 

Background: Heart rate variability(HRV) data 

obtained from ECG recording provides an index of 

autonomic function; high frequency power(HF) of 

HRV provides a marker of vagal regulation of the 

heart(VRH). Upon finding that HF of HRV was 

correlated with survival in 33 patients with 

hepatocellular cancer, median survival 11 days, 

Chiang et al (2010) postulated that HRV analysis 

shows promise as a prognostic indicator. 

Aims: 

1. Describe prevalence of non-age-related vagal 

autonomic dysfunction(VAD)in advanced cancer 

2. Identify if VAD has prognostic utility earlier in the 

disease trajectory of advanced cancer. 

Methods: Independently mobile patients with 

metastatic or loco-regionally advanced cancer 

admitted consecutively to palliative care services who 

consented to participate in a prospective study of the 

risk factors for falls in advanced cancer underwent 

classical autonomic function testing (Wieling, 

Ewing).Those with abnormal HR responses for age to 

deep breathing(DB) and active stand were defined as 

having definite VAD(Wieling). Medications 

transcribed from admission notes and verified at 

patient interview, date of death obtained from the 

electronic patient database. Influence of medications 

examined using ń 2 test and Kaplan-Meier analysis 

and log-rank test used in survival analysis. 

Results: Data from135 of 155 patients recruited were 

analysed(20 had arrhythmia or unable to manage DB 

test)52.6% male, mean age 67±12.3yrs, most 

common diagnoses bronchial(17.8%), 

breast(16.3%)and lower GI cancer(13.3%). 55.6% had 

VAD. Cardioactive drugs not associated with 

increased frequency of VAD (ń 2 =2.2 p=0.14). 34 were 

alive at time of analysis and had censored survival 

times. Median survival for definite 

VADgroup110(95%CI; 71-149) versus118days (101- 

135) respectively (ń 2 =0.35 p=0.56). 

Conclusions: 56% of ambulant patients with 

advanced cancer have disease-related autonomic 

dysfunction (AD). AD was not shown to have 

prognostic utility in ambulant patients with advanced 

cancer. 



Complicated Grief and Adaptation Process 

Acording to the Age 

Lacasta Reverte L.M.A. 1 , Vilches A.Y. 1 , Pérez - Manrique 

T. 1 , Diez-Porras L. 1 

1 Hospital Universitario La Paz, Cuidados Paliativos, 


Introduction: No extend studies have been made 

on different forms of responses depending on the age 

in the elaboration of the grief. 

Objective: This study aims to evaluate the different 

responses in the elaboration of grief depending on the 

age. 

Material and methods: Included in this study, 106 

participants in the experimental group and 65 in the 

control group. They are relatives of cancer undergoing 

chimotherapy patients derived from complicated 

grief. The average age is 58 years. The age variable 

have been categorized into 3 groups: 

< 40 years 

40-65 years and 

> 65. 

Relatives are evaluated before and after the treatment 

and there is monitoring at 6 months and one year 

after treatment. The instruments used for evaluation 

are: the hopelessness scale, depression inventory, 

Anxiety Inventory, the general health questionnaire, 

grief experiences inventory, complicated grief 

inventory, the coping questionnaire, self-esteem 

inventory, the functional-social support 

questionnaire, the perceptual adaptation scale and 

extraordinary life events scale. 

Results: The results obtained with the General Linear 

Model of repeated measures on dependent variables 

in relation to the age and belonging in the control or 

experimental group, in order to identify any 

significant differences between those participants, 

which have received psychological treatment or not, 

show significant differences (p < 0.05) in the 

evolution of the dependent variables of Depression, 

Anxiety, General Health and Level Adaptation. 

Those over 65 years differ from the other 2 groups 

because they presents lower scores than they, both 

control and experimental group. The youngest scored 

higher. Approaching the increase of age decreases the 

score. 

Conclusions: The data shows a better adaptation or 

acceptance of loss as the age increases, especially in 

the elderly persons. 


Withdrawn 



The Evolution of the Bereavement’s Myths of 

the Students during his Master Course in 

Palliative Care and their Influent Factors 

Capelas M.L. 1 , Flores R. 1 , Guedes A.F. 1 , Paiva C. 1 , 

Pingarilho M.J. 1 , Roque E. 1 


Sciences, Lisboa, Portugal 

Aim: 

• To analyse the evolution of the myths of the 

students during their Master in Palliative Care 

• To identify the influencing factors of the presence or 

evolution of the myths. 

Methods: 

• We used the Bereavement Myth’s Scale (31 item- 

Likert Scale) developed by Gastian L and Garcia L 

[Medicina Paliativa, 14 (1)] and we used one sample 

with 31 subjects. 

• We asked the students before the curricular unit 

about the grief/bereavement (T1), immediately after 

(T2) and at the final of the master course (T3). 

• We organized the professions in 4 groups 

(physicians, nurses, psychosocial that included 

psychologist and social workers and, finally, one 

group with others professions). 

Results: 

• In the different times the majority of the students 

gave the right answers, but in the T2, in one 

question (“occupy their free time is a good strategy 

to distract and soothe the bereaved person) almost a 

half subjects gave the wrong answer 

• The number the myths was decreased from the 

T1(25.2±3.3) to T2(26.5±3.1) (p< 0.05) but didn’t 

change from T2 to T3(27±2.5) (p≥0.05) 

• There was change of the answers of 3 items during 

the course (p< 0.05) 

• At the final of the course the students who work in 

palliative care services had more myths than the 

others (p< 0.05); no any other factor influenced the 

number of the myths at the end of the course. 

• The gender affected the answer in 2 items at T3 (men 

had more wrong answers); to work in palliative care 

services affected the answers in 2 items at T3 (who 

work had more wrong answers); previously 

education in PC affected 1 item at T1 (who didn’t 

have gave more wrong answers); (p< 0.05). 

Conclusions: 

• The education in Palliative Care improves the 

knowledge about the grief/bereavement and the 

students, during his course, decrease their myths 

• Work in palliative care services is less important 

than the education in PC to the improvement of the 

knowledge about the grief/bereavement 

· The education in PC is an important factor to 

decrease the bereavement’s myths. 



Grief Process Adaptation Accordint to the 

Gender and Effect of Treatment 

Lacasta-Reverte R.M.A. 1 , Vilches A.Y. 2 , Diez D.L. 3 , Sanz 

L.B. 4 , Ibarra C.C. 3 

1 Hospital Universitario la Paz, Cuidados Paliativos, 

Madrid, Spain, 2 Hospital la Paz, Paliativos, Madrid, 

Spain, 3 Hospital la Paz, Madrid, Spain, 4 H. Gregorio 

Marañon, Madrid, Spain 

Introduction: It is considered that while women 

express and share their feelings, give support and 

allowed to receive from others, men use 

intellectualization or perform tasks to face their loss, 

put aside their feelings and try to appear strong before 

others. Although these gender differences could be 

true, are just generic descriptions, so any relative 

could follow a different style preestablished in the 

grief elaboration. For this reason we differentiate 

“feminine grief” and “masculine grief.” 

Objective: Evaluate different responses in the grief 

elaboration according to the sex. 

Materials and methods: 106 participants are 

included in the experimental group and 65 in the 

control group. The experimental group was made up 

of 87 women (average age = 56.54) and 19 men 

(average age = 67.42) and the control group included 

50 women (average age = 56.93) and 15 men (average 

age = 68.125). 

All of them are relatives of cancer undergoing 

chimotherapy patients derived from complicated grief. 

Relatives are evaluated before and after the treatment 

and there is monitoring at 6 months and one year 

after treatment. The instruments used for evaluation 

are: hopelessness, depression, anxiety, general health, 

grief experience, complicated grief, confrontation, 

self-esteem, functional-social support, adaptation and 

extraordinary life events. 

Results: The results obtained with the General Linear 

Model of repeated measures on dependent variables 

in relation to the age and belonging in the control or 

experimental group, showed significant differences (p 

< 0.05) in the dependent variables of hopelessness, 

physical symptoms factor of the anxiety variable, 

mental disengagement factor of the coping strategies 

variable between gender and group. 

Conclusions: The treatment favour: 

- Further reduction of hopelessness in women than in 

men. 

- That women decrease the anxiety similar than the 

men. 

- That the men reduce mental disengagement as a 

strategy typical of this gender and women increase it. 



Religion and Bereavement - Indian Context 

Muckaden M.A. 1 , Dighe M.P. 1 , Chandorkar S.S. 1 

1 Tata Memorial Centre, Palliative Care Medicine, 

Mumbai, India 

Aims: A qualitative research study was undertaken to 

understand the role of religion in coping with 

bereavement in the Indian context. 

Methodology: The Palliative Care Unit is based in 

an urban city where patients with advanced cancer 

are referred from all over India. To understand coping 

mechanisms; 12 bereaved primary care givers were 

selected to represent 3 major religions in India- 

Hindu, Muslim and Christian. At the time of the 

bereavement visit, they were explained the purpose of 


the study. Those willing to participate were called for 

an interview at the Unit. A semi-structured interview, 

4-6 weeks after the death of their loved one, was 

conducted by the Primary Investigator with 2 staff ; 

recorded with prior permission. Informed consent 

was obtained Prompts designed by all team members, 

were used. Analysis was done with methods of 

Qualitative Research methodology. 

Results: Of the 12 interviewees 10 were Hindu, 1 

Christian and 1 Muslim. 

11/12 caregivers expressed that an abiding faith in 

God, helped them right through this most trying 

period in their lives. Indians believe that in the end- 

“God gives you the strength to walk the path and face 

the disease” Though 3 caregivers prayed for a cure till 

the end; their faith helped them accept the inevitable. 

Interestingly, 4/5 caregivers felt there is only one God, 

The rituals associated with death were performed by 

all except 2. The 10 caregivers found them comforting 

. They believed that their performance, helped the 

departed soul to move on and attain “moksha”. 

Visiting by the extended family, gave them a chance 

for ventilation. No cooking in the bereaved home 

gave a chance for others to show caring. 

Conclusions: In a systemic review published in 2004 

of all Palliative Care journals over a period of 1990- 

1999, religion and spirituality were addressed to some 

extent 18.5% of times. For Indians, over 80% of 

caregivers found religion and rituals helpful in coping 

with bereavement. 



Bereavement’s Myths in the Students at the 

End of Masters Courses (Palliative Care and 

Others): Differences and Influencing Factors 

Capelas M.L. 1 , Flores R. 1 , Guedes A.F. 1 , Paiva C. 1 , Roque 

E. 1 , Pingarilho M.J. 1 



Aim: 

• To describe the myths of the students at the end of 

their courses in Palliative Care and others 

• To analyse the differences between the Palliative 

Care’s students and other students 

• To identify the influencing factors of the presence of 

the myths 

Methods: 

• We used the Bereavement Myth’s Scale (31 item- 

Likert Scale) developed by Gastian L and Garcia L 

[Medicina Paliativa, 14 (1)] and we created two 

groups of subjects (65 Palliative Care’s students and 

50 students of other courses); 

• The scale had good reliability (Cronbach-alfa=0.835) 

and we used both the T-Test, Mann-Whitney U-Test 

and Qui-Square to analyse the differences and to 

identify the influencing factors. 

Results: 

• In all questions the majority of the students gave the 

right answer but in two items (“bereavement’s 

clothes are unfashionable and don’t help the 

bereaved person” and “just think on the positives 

things that happened in the relationship with the 

deceased is the most appropriate resolution of the 

grief”) just a half students gave the wrong answer. 

• The palliative care students had less myths than the 

other students, with p< 0.05 (27±2.5/31 and 

23±3.6/31, respectively) 

• In the palliative care’s students just the gender 

influenced the number and the type of the myths 

(p< 0.05) while in the other students no any factors 

influenced the number of the myths 

• In the total of the subjects only the gender and the 

education in Palliative Care influenced the number 

of the myths; the men had more and the PC 

students had less. (p< 0.05). 

Conclusions: 

• Although the majority of the students had few 

myths, the palliative care students and the women 

had less myths than the others. 

· The education in PC is an important factor to 

decreased the bereavement’s myths. 



Support Groups for Bereaved Young Adults - 

Lessons Learned 

Hultkvist S. 1 , Alex R. 1 , Sand L. 1 

1 Stockholms Sjukhem, Stockholm, Sweden 

At the palliative unit of Stockholms Sjukhem, Sweden 

about 500 patients die each year. Of these, about 150 

are aged 45-65 years and may have children aged 16- 

28 years. Since 2004, young adults are offered support 

groups in order to prevent future illness and help 

them to cope with their loss. So far 95 young adults 

have participated. 

Groups consist of 10 weekly sessions, each two hours. 

The group process and sharing of experiences are the 

supporting factors. Common themes have been e.g. 

memories, anger and guilt, death and continuing 

bonds, support and consolation, and thoughts about 

the future. 

Aim: To summarize what we as leaders have learned 

experiences and from evaluations. 

Method: After each meeting, group leaders write 

memos. After completing the group, participants fill 

out a simple evaluation. A report is written from these 

two sources. 

Results: Group support is a suitable form for 

supporting young adults and their recovery in grief. It 

enhances self-confidence and breaks the feeling of 

loneliness and isolation. Stories require listeners and 

this opportunity is given in the group. Lessons 

learned: 

• Regular meetings are needed to keep the group 

process alive. 

• The higher degree of recognition, the better for the 

group process. 

• A few months after the loss need to pass before 

contributions can be made to the processing and 

sharing of grief. 

• It is important to meet young adults where they are. 

They are vulnerable and need help to find the 

strength to stay, especially in the beginning. 

• The group provides physical and mental space for 

grief and grief reactions are normalized. 

• Participants help each other to create hope for the 

future. 

Scientific / theoretical evidence for the effect is still 

lacking. Now we plan to perform a systematic 

investigation to determine whether group support 

enhance psychological well-being, strengthen selfesteem 

and minimize risk for relation difficulties. 



Adaptation and Validation of the Prolonged 

Grief Disorder Assessment Instrument (PG-13) 

for Portuguese Population 

Delalibera M. 1 , Coelho A. 1 , Barbosa A. 2 

1 Hospital de Santa Maria, Lisboa, Portugal, 2 Faculdade 

de Medicina da Universidade de Lisboa, Lisboa, 

Portugal 

In palliative care, one of the important purpose is the 

counseling of families at risk of developing 

complicated grief, that like literature describes may 

affect 10-20% of the bereaved. This study aims to 

validate the Portuguese population the instrument 

PG-13 (Prolonged Grief Disorder), created by 

Prigerson et al. (2007) for diagnosis of Prolonged 

Grief, whose criteria are: the experience of lossgenerating 

intense longing and yearning for the 

deceased that extends for a period exceeding six 

months; emotional symptoms, cognitive and 

behavioral dysfunction and meaningful life social and 

occupational functioning. 

The population includes 102 caregivers of patients 

accompanied by Support Team Palliative Care, 

Hospital Santa Maria. The participants are mostly 

female (82.4%) with mean age of 58.87 (SD: 13.41) 

and range between 15 and 84 years. Most respondents 

are widowed (62.1%), and 93.2% of these people are 

mourning the loss of a spouse. The second largest 

group of subjects corresponds to married persons 

(29.5%) who lost one of the parental figures (64.3%) 

and brothers (14.3%). Deceased family members have 

an average age of 68.68 (SD: 11.50), with amplitude 

between 27 and 89 years. The gender distribution in 

the group of deceased patients are 57.8% male and 

42.2 % female. 

The internal consistency instrument is considered 

very high (.932). The results indicates that 22.5% of 

the population manifests symptoms of prolonged 

grief. There were no significant differences in terms of 

socio-demographic variables or the circumstances of 

illness and death. The analysis of the percentages 

reveal that Prolonged Grief Disorder is prevalent in 

female subjects (91.3%), widowed (68.2%) and in 

cases where the deceased was being the spouse 

(65.2%). 





Bereavement Care for Relatives by Oncology 

Nurses: Contact by Phone 

Vulperhorst J.J.M. 1 , de Nijs E.J.M. 2 , Teunissen S.C.C.M. 2 

1 University Medical Center Utrecht, Oncology, 

Utrecht, Netherlands, 2 University Medical Center 

Utrecht, Medical Oncology, Utrecht, Netherlands 

Introduction: The nursing team of the Medical 

Oncology ward, experiences a gap in supportive care 

for relatives of patients who died on the ward. 

Relatives, repeatedly, visit the ward unexpectedly 

after the death of a loved one. In contrast with 

medical oncologist’s, there is no structural offer of 

bereavement support by nurses. 

Method: An intervention for bereavement support is 

developed based on a literature search (Pubmed, 

Cinahl), and interviews in 3 different care settings in 

which bereavement support is integrated in usual 


Aims of the study: What are the needs and 

expectations of relatives in bereavement support by 

nurses; what should the support intervention consist 

of; what skills do nurses need to carry out the 

intervention? One year after implementation of the 

intervention, it is evaluated on the usability in daily 

practice for the nursing team. 

Results: The study shows that many care settings 

don’t provide structural bereavement support, while 

half of the relatives wish some kind of aftercare. Most 

relatives are satisfied with a single contact by phone to 

evaluate the period on the ward and death of the 

patient in the hospital. Relatives prefer bereavement 

follow-up after 4 weeks after the death of the patient. 

Identification of problematic grief is not possible with 

this kind of support. Basic communication skills 

developed in the education and daily practice of the 

oncology nurse are sufficient for bereavement support 

by telephone when facilitated by a checklist with the 

content and process of the ‘after-care’ contact. Results 

of the evaluation (response 83%); Nurses are very 

positive about the supportive care. They notice the 

appreciation of the family members for the extra 

attention. When needed, added information can be 

given. 

Conclusion: Telephone bereavement support by 

nurses turned out to be effective. Implementation has 

been successful. A checklist for communication seems 

to be an effective instrument. 



Improving a Bereavement Service in a 

Tertiary Cancer Centre 

Moran S.M. 1 , Coackley A. 1 , Noble A. 1 , Griffiths A. 1 , 

Foulkes M. 1 , Hampton-Mathews J. 1 , Winsborrow S. 1 , 

Nugent D. 1 

1 Clatterbridge Centre for Oncology, Crest, Wirral, 


Aim: To improve bereavement care service for all 

users in a cancer centre. 

Objective: To develop and implement a post 

bereavement service for all relatives of patients who 

have. 

Background: The Department of Health proposed 

that all NHS Trusts should provide support and advice 

to families at the time of bereavement and that all 

NHS Trusts should have a provision of sensitive, 

responsive information and support for bereaved 

families was not an ‘optional extra’ but something 

that should be foremost in the NHS services.The 

current bereavement service within the organisation 

is effective but does not offer on-going or further 

support for the bereaved. The authors are part of the 

Palliative Care Team in a large tertiary cancer centre. 

Method: The current bereavement provision within 

the organisation consists of a day-after-death follow 

up with bereaved relatives. During this period, a 

senior nurse will meet the relatives. The bereaved 

relatives are provided with written information. The 

relatives are informed about cause of death, 

registration process, funeral arrangements, relevant 

paperwork, death certificate and directions to 

registrar’s office. Following this meeting there is no 

other bereavement support offered by the 

organisation. The palliative care team within the Trust 

emphasised the importance of bereavement and 

developed a bereavement team, to redevelop and 

enhance bereavement services. For example send out 

a condolence care, list the agencies within the locality 

of the bereaved which offer bereavement support and 

counselling and also to follow this up with a phone 

89 


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call, to provide an opportunity for ongoing 

bereavement support. The education around 

bereavement care and communication skills would be 

incorporated into the palliative care team’s education 

strategy. 

Conclusions: The aim (as above) this will be 

achieved through the improvement of 

communication and specific recourses for each 

locality and the introduction of follow-up. Evaluation 

and audit will be used. 



What to Tell Children and Not to Tell. Is it 

Wise to Tell Children that their Mother or 

Father Is Dying 

Rithara S.M. 1 , Kimani G.G. 1 

1 Nairobi Hospice, Nursing, Nairobi, Kenya 

Children are growing human beings and needs to 

understand/informed what is going around them. A 

child understanding of death is influenced by age 

related developmental stages Capital Health [2006]. 

Purpose: Explore children’s understanding. 

Children often perceive that something is wrong even 

if they are not told, because routines are disrupted and 

people close to them may look and act differently. 

it has come up strongly that it is better to explore with 

the children of what they understand of death, since 

our culture forbid adults to discuss death with 

children especially if it involves parents or close 

relatives. 

Research done at the hospice, 3 out of 5 children cope 

well with the information being paced well and 

relating the situation to the previous one especially of 

death such as grandparent. 

Children who are supported, cared for and loved, with 

extra kisses, hugs and time spent together cope well 

with bad information than who are left without 

information. 

2 out of 5 don’t cope due to lack of proper support and 

the way information are given and this affect them in 

later life. Allowing children to express their feeling 

and answering questions simply and honestly has 

shown improvement. Half of patients cared for by the 

hospice team shown that their children were being 

left out of the correct information. Children need 

support and understanding especially when bereaved 

by parent to know they are cared for, understood and 

can contribute in any way. 

Conclusion: Further research on children 

understanding of parent death. 



The International Visiting Scholars Program: 

Comparison of International Physicians with 

U.S.-Trained Physicians after a Rotation in 


Yang H.B. 1 , Moore S.Y. 1 , Lloyd L.S. 1 , Nelesen R.A. 1 , 

Whitmore S.M. 1 , Ferris F.D. 1 

1 The Institute for Palliative Medicine at San Diego 


Background and aims: International medical 

graduates (IMGs) make up a large portion of 

physicians entering U.S. residencies. Palliative 

medicine (PM) is not typically part of medical school 

curriculum globally. Consequently, IMGs do not have 

the same exposure as U.S. students who have PM as 

part of their curriculum, but IMGs still need PM skills 

for patient care. The International Visiting Scholars 

(IVS) Program was a pilot project to determine 

whether a rotation in PM would lead to 

improvements in IMGs, similar to U.S. trainees. Our 

hypothesis was that knowledge and competence 

would improve to the level of U.S.-trained physicians, 

and that the level of concern would decrease 

similarly. 

Study designs and methods: 21 physicians from 

14 countries participated in a 4-week program in PM 

with 1 week didactic and 3 weeks bedside training. 

The 4 cohorts each completed online pre- and postcourse 

evaluations. These results were compared to 

U.S. resident physician and medical student data who 

also participated in a PM rotation. The objective 

evaluations of concern and knowledge were analyzed 

using the Wilcoxon Signed-Rank test. A ‘repeated 

measures with grouping factor’ analysis was 

performed to evaluate the individual knowledge 

scores by group. The Friedman test was used to 

evaluate the changes in competence. 

Results and conclusions: After the program, the 

IVS level of concern about PM topics, while starting 

higher (p< .001), dropped significantly (p< .001) to 

the same level as U.S. residents. The IVS knowledge of 

PM increased significantly (p< .001), mirroring the 

change seen in U.S. medical students. Perception of 

competence also improved significantly (p< .001), 

mirroring both the U.S. medical students and 

residents. This shows that significant change in IMGs 

to the level of U.S. medical trainees is possible through 

a 4-week educational experience in PM. 

Main source of funding: National Cancer Institute 

Administrative Supplement to 5R25 CA 104990 



Pediatric Palliative Care Education. 

“Continuous Professional Development” 

Workshops 

Bernadá M.M. 1 , Zabala C. 2 , Le Pera V. 2 , Dall’Orso P. 1,2 , 

Bellora R. 2 , Fernández G. 3 , Dallo M.D.l.A. 3 , Capercchione 

F. 3 , Carrerou R. 2 , Lores R. 2,4 , Rocha S. 2 , González E. 2 , 

Giordano A. 2 

1 Facultad de Medicina Universidad de la República, 

Pediatrics Department, Montevideo, Uruguay, 2 State 

Health Servicies Administration - Public Health 

Ministry, Pereira Rossell Hospital Center, 

Montevideo, Uruguay, 3 Facultad de Medicina 

Universidad de la República, Medical Psychology 

Department, Montevideo, Uruguay, 4 Facultad de 

Medicina Universidad de la República, Bioethic’s 

Unit, Montevideo, Uruguay 

In most of professional health studies in the country, 

there is no specific palliative care (PC) training. Not 

even in those related to Pediatrics. The American 

Academy of Pediatrics established that all 

professionals involved in pediatric assistance should 

have minimal PC competences. 

Objective: To present the pedagogic model of the 

first pediatric PC (PPC) educational meetings in the 

country. 

Methodology: In one year, five eight-hour 

workshops, “PPC introductory workshop”, were held. 

General objectives: 

a) to spread basic PC concepts and national legal 

frame 

b) to offer a reflective space to analyze theoretical and 

practical issues of children living with threatening or 

life-limiting conditions health care. 

Educational methodology: To achieve cognitive and 

attitudinal learning an interactive methodology was 

used: oral presentations, role playing and clinical case 

discussion in small interdisciplinary groups. 

Evaluation: Different pre and post test formats were 

used. A satisfaction survey with close and open 

questions was given. 

Results: 153 health professional workers participated: 

91 medical doctors; 33 nurses, 7 psychologists, 6 social 

workers, 4 students, 2 physiotherapists, and others. 

Items included in the “Satisfaction survey” were: 

bibliography, methodology, clinical cases, 

information, global time duration, group’s work 

extent, presentation extent. Most of the participants 

considered all items as “adequate” or “very adequate”. 

Most frequent answers to: 

a) “The best of the workshop was”: interdisciplinary 

discussion of clinical cases and the role playing 

b) How can we improve it?: to expand the project; to 

invite public health authorities. 

Conclusions: 

Achievements: PPC has been introduced to the 

continuous professional development agenda with 

excellent receptivity and accepted methodology. 

Challenges: Basic PPC training has to be expanded; 

new educational advanced formats for specific groups 

should be developed; educational impact should be 

evaluated. 



Developing National Competencies for 

Palliative Care Post Graduate Education in 

Switzerland 

Gamondi C. 1,2 , Hoenger C. 3 , Currat T. 4 

1 Istituto Oncologico della Svizzera Italiana (IOSI), 

Cure Palliative, Bellinzona, Switzerland, 2 Palliative ch, 

SwissEduc, Zürich, Switzerland, 3 Service de la Santé 

Publique du Canton de Vaud, Lausanne, Switzerland, 

4 Centre Hospitalier Vaudois (CHUV), Service de Soins 

Palliatifs, Lausanne, Switzerland 

Context: Until recently, the development of 

palliative care (PC) in Switzerland was the result of 

regional initiatives, without a national political 

coordination. In 2009, the Federal Office of Public 

Health issued a national strategy to coordinate the 

future development of PC. 

Aim: In this context, Palliativ ch (the national PC 

association) received the mandate to develop a 

comprehensive catalogue of competencies for the 

most frequently involved PC health professions such 

as nurses, physicians, psychologists, social workers, 

chaplains and art therapists. 

Methods: The methodology was an occupational 

analysis, inspired by the DACUM process (Developing 

a Curriculum): 10-20 PC professionals describe their 

activity in a structured way, supervised by 

international PC experts. The facilitators adapted the 

methodology allowing the participants to integrate 

reference documents (Recommendations of the 

EAPC, PC workers competencies from Québec) into 

the description of their daily practice. Participants’ 

selection criteria: profession, linguistic area, 

workplace and expertise. 

Result: 350 specific competencies organised in 20 

main domains: Physical dimension (D); Physical D, 

cross competencies; Psychological D; Social D; 

Cultural D; Spiritual D; Ethical D; Legal D; 

Anticipation; End of life; Grief; Communication; 

Relationship with the family; Interprofessional/disciplinary 

and network Teamwork; 

Consultancy; Personal and professional development; 

Training and education; Research; Quality; PC 

Development. 

Conclusion: This process led to a national consensus 

in terms of clinical practice and underlying 

philosophy. The document will be used to harmonize 

postgraduate education in PC, giving to educators and 

learners an instrument for creating a common 

language and a less jeopardized realty. This is a long 

and necessary process to transform a young discipline 

into a strong field in healthcare and to obtain 

recognition and funding. 

Main source of funding: Palliative ch 



Knowledge of Nursing Undergraduate and 

Graduate Students Concerning Palliative 

Care: The Experience of the University of São 

Paulo at Ribeirão Preto, College of Nursing 

Lima R.G. 1 , Cybis J.B. 1 , Mello D.F. 1 , Nascimento L.C. 1 , 

Nursing Research: Child and Adolescent Care 

1 University of São Paulo, Maternal-Infant and Public 

Health Nursing, Ribeirão Preto, Brazil 

Objective: To identify the knowledge of 

undergraduate and graduate nursing students 

concerning palliative care. 

Method: This is a descriptive, exploratory and field 

study. Undergraduate and graduate nursing students 

from a nursing school in the state of São Paulo, Brazil 

participated in the study. Data were obtained through 

a self-report questionnaire addressing identification 

data (gender, age, marital status and religion) and 

questions related to the definition of palliative care, 

experience with providing palliative care to patients, 

characteristics of palliative care and courses 

addressing the theme. Students attending the school 

in a predetermined day were invited to participate. 

Data were analyzed through frequency and 

percentage. A Research Ethics Committee approved 

the study. 

Results: Total of 60 subjects, 43 undergraduate 

students, four from a specialization program, and 13 

master’s and doctoral students; 58 were women and 

two were men; 42 were between 16 and 25 years of 

age; 17 between 26 and 35 and one between 36 and 45 

years old. Of these, 57 were already familiar with 

palliative care due to their participation in scientific 

events, information obtained through the media and 

scientific reading. In relation to direct care, 27% 

reported having experience in providing palliative 

care. Among the reported 172 characteristics 

regarding patients receiving palliative care, the 

following are highlighted: self-care deficit, pain, 

chronic-degenerative disease; symptoms such as 

weight loss, pallor and fatigue, and dependence on 

primary and complex care. A total of 46% individuals 

reported not having attended courses that addressed 

palliative care at undergraduate or graduate programs. 

Conclusion: The results evidenced that students 

have low knowledge on palliative care and the theme 

was not systematically addressed in the nursing 

educational process of these individuals, who 

nevertheless, deliver this kind of care during clinical 

teaching activities or at work. 




Spirituality and Spiritual Care Training in the 

Workplace: Attitudes of Doctors and Final 

Year Medical Students 

Howard M.B. 1 , Gleeson A. 2 

1 St. James’ Hospital, Palliative Care, Dublin, Ireland, 

2 Our Lady’s Hospice and Care Service, Palliative Care, 


Background: There has been an increasing interest 

in the importance of spiritual care in relation to 

healthcare delivery particularly in palliative care. 

Internationally, much progress has been made in 

developing guidelines on spiritual care delivery for 

health professionals, and it is increasingly recognized 

that spiritual care is an inherent component of 

holistic health care. Currently in the Republic of 

Ireland there are no formal guidelines on spiritual care 

delivery in health care settings. 

Objective: The principle aim of this survey was to 

ascertain the attitudes towards spirituality of doctors 

and final year medical students working and studying 

in a major teaching Hospital in Ireland. Respondents 

were questioned on the meaning of spirituality, 

importance of spirituality in professional practice, 

and attitude toward spiritual care training. 

Methods: A 4 page anonymous postal questionnaire 

was sent to doctors and final year medical students. 

The resultant quantitative data regarding attitudes 

towards spirituality in the workplace and spiritual 

care training was analysed using descriptive statistics. 

Results: We will present the results of approximately 

100 returned questionnaires, giving data on attitudes 

towards spirituality, attitudes towards spiritual care as 

part of holistic healthcare delivery, and the 

importance of spirituality in individual clinical 

practice. 



Training GPs in Writing Information 

Transfers for Out-of-Hours Palliative Care: A 

Controlled Trial 

Schweitzer B.P. 1 , Blankenstein N.H. 1 , Slort W. 1 , van der 

Horst H. 1 , Deliens L. 1 

1 VU University Medical Centre, EMGO+, Amsterdam, 

Netherlands 

Introduction: GPs provide care at home for a 

growing number of patients in need of palliative care. 

The radical change in general practice out-of-hour 

cover by the introduction of GP co-operatives 

increased the need for communication. Transfer of 

information between GPs and their out-of-hours cooperatives 

is essential to ensure continuity of care. 

We hypothesized that the number of out-of-hours 

contacts regarding palliative care in which adequate 

information was available would increase after 

training GPs in writing information transfers for their 

palliative care patients to the GP co-operative. 

Method: We performed a controlled trial. Two 

clusters were formed by dividing all GPs working in 

Amsterdam (N= 426) into two groups. All GPs in the 

experimental group were invited for a training in 

writing information transfers. 

In the control group no training was given and out-ofhours 

palliative care was provided as usual. 

We studied all first out-of-hours contacts with the GP 

co-operative of Amsterdam concerning patients in 

palliative care for the presence or absence of 

information transferred by the patient’s own GP. 

Results: Information was transferred by the GP and 

available for the locum in 179 of the 772 first 

palliative contacts (23,2%).The number of contacts in 

which information was available increased 

significantly in the experimental group after 

intervention, compared with the control group. 

The content of the transferred information was 

adequate in 82,7%. There was no significant 

difference regarding the content between the 

experimental group and the control group. 

Conclusion: Training GPs in writing information 

transfers resulted in a increase of information 

transfers to the GP co-operative. Nevertheless 

remained the number of contacts in which this 

information was present still low. Although training 

of GPs is helpful, further policies must be developed 

by GP co-operatives to improve continuity of care by 

information transfer. 



An Evaluation of a 2-day Education 

Programme in Promoting Knowledge and 

Confidence in the Practice of Palliative Care 

for Hospital Nurses 

Hutchison T. 1,2 , Mason S. 2 

1 Royal Liverpool University Hospital, Practice 

Education Facilitators, Liverpool, United Kingdom, 


Liverpool, United Kingdom 

Aim: To evaluate if hospital nurses attending a 2-day 

palliative care education programme achieve any 

increase in knowledge and confidence relating to 

palliative care in the acute clinical setting. 

Method: A 2-day programme was developed by a 

panel of Clinical Nurse Specialists and a Lecturer 

Practitioner from the Hospital Palliative Care Team. 

Longitudinal evaluation consisted of pre-test/post-test 

design, utilizing 3 questionnaires. A demographic 

questionnaire the Palliative Care Quiz for Nurses and 

a confidence questionnaire were administered before 

the programme. The PCQN and confidence 

questionnaire were completed at the end of the course 

and again 3 months later. 

Results: The programme was delivered on 3 

occasions to a total of 44 Registered Nurses. The pre 

and post questionnaires were completed by all 

participants, however the 3 month follow up 

questionnaires achieved a response rate of 54% 

(n=20). Findings demonstrate a statistically 

significant increase from baseline in knowledge 

regarding pain and symptom control on post (t=2.98, 

p< 0.005) and longitudinal follow up (t=5.7, p< 

0.000). Equally a significant increase on baseline 

confidence was also reported at post (t=-8.54, p< 

0.000) and longitudinal follow up (t=-6.0, p< 0.000). 

However, there was no measurable difference relating 

to knowledge that focussed on less tangible aspects of 

care such as beliefs and attitudes. 

Conclusion: The findings suggest that Registered 

Nurses benefited from receiving this 2-day education 

programme in terms of knowledge and self rated 

confidence regarding practice. However, a change to 

the delivery of some sessions is required to further 

impact on all components of the course. 

Demonstrating the value of education in a clinically 

focussed acute hospital environment is important 

given competing demands between clinical and 

educational priorities. 



International Palliative Care Network Poster 

Exhibition 

Bharadwaj P. 1 , Shaikh A.K. 2 , Alam U.A.T. 3 

1 Cedars- Sinai Medical Center, Los Angeles, CA, 

United States, 2 Lincoln Medical and Mental Health 

Center, New York, NY, United States, 3 Newtown 

Surgery, Great Yarmouth, United Kingdom 

Aim: To conduct an online poster exhibition. Since 

its inception, Palliative Care Network (PCN)’s aim has 

been to bridge the knowledge gap amongst palliative 

care professionals globally with the use of technology. 

Method: Participants were invited to prepare their 

poster/s on a Power Point template provided to them. 

The poster exhibition was open to participants from 

all fields of palliative care around the globe. The 

posters were submitted for evaluation by an expert 

panel. Accepted posters were posted on-line for review 

by visitors of the website. Visitors were allowed to 

comment on the posters. The website also allows 

palliative care professionals to network and foster 

collaboration. The top three posters received cash 

awards totaling $1000 and other outstanding posters 

received an honorable mention. First authors of all 

accepted posters received an e-certificate. There was 

no cost to participate. This is a volunteer driven 

initiative. The first PCN online poster exhibition was 

launched in 2009. 

Results: Thirty two posters from around the world 

comprising of various aspects of palliative care were 

displayed in the International Palliative Care Network 

Poster Exhibition 2009. A total of thirteen 

organizations, publications and institutions 

supported the exhibition by promoting it. The first 

three prizes were awarded to posters submitted from 

Australia, China and Bulgaria in the categories of 

physical therapy, research and symptom 

management respectively. Five posters received an 

honorable mention. Positive feedback was received 

on the ease of participation. One participant 



commented “the exchange of knowledge from the 

poster exhibition has changed the way palliative care 

is practiced in my country”. 

Conclusion: The PCN online poster exhibition is a 

high impact platform allowing palliative care 

professionals from around the world to share their 

work with a global audience at zero cost to them. PCN 

intends to continue this volunteer lead initiative 

annually. 



Developing the Unitary Curricula on 

Palliative Care in Nursing School for 

Romania, Moldova and Serbia 

Mitrea N. 1 

1 Hospice Casa Sperantei, Education, Brasov, Romania 

Context: Allthought there are many international 

theoretical instruments available on the subject of 

palliative care nursing education, in practice local 

initiatives are lacking in order for these instruments to 

be efectively used. Hospice Casa Sperantei identified, 

in Eastern Europe, models of palliative care nursing 

curricula in various forms and with solid differences 

in content, and concluded the need of 

standardisation of curricula content in Romania and 

neighbour countries. 

Aim: To ensure adequate, consistent and quality 

training in Palliative Care for nurses at undergraduate 

level, through design of the undergraduate Palliative 

Care nursing curricula based on the EAPC’s standards 

and development of the faculty resource book and 

CD. 

Method: Research and translation of available 

relevant resources; initial and final international 

workshops to agree on topics, objectives and format 

of the materials. The participants invited were: nurses 

educational decision-makers, palliative care trainers, 

tutors and educational authorities representing 

Romania, Moldova and Serbia. 

Results: EAPC nursing curricula was chosen as base 

for developing the curriculum; level A objectives were 

considered; 11 main topics were selected 

(Introduction in Palliative Care and Hospice 

Philosophy, Ethics, Communication, Pain, Suffering, 

Bereavement, Spirituality, Symptom management, 

Tissue Problems, Terminal stage, Interdisciplinary 

care plan); a format similar to the Help the Hospice’s 

trainer’s manual was chosen; the manual and CD 

were printed and distributed free of charge to all 

undergraduate nursing schools in Romania and 

Moldova. 

Conclusions: This is the first step to ensure proper 

education for palliative care nurses in the region and 

to make their educational competences 

internationally recognized. The project acknowledged 

the differences between curricula used for palliative 

care education at college level in Balkan region and 

put the basis for establishing common curricula. 



International Visiting Scholars Program: 

Preliminary Results of Physicians’ Qualitative 

Interviews 

Montross L.P. 1 , Yang H. 1 , Moore S. 1 , Ferris F.D. 1 

1 Institute for Palliative Medicine at the San Diego 


Background and aims: The International Visiting 

Scholars program was created with the purpose of 

bolstering palliative care skills among physicians 

across the globe. This program provided four weeks of 

residential training within the United States. 

Physicians received didactic training in palliative care 

practices, completed clinical observations, and 

practiced presentation skills as well as stress 

management techniques. Qualitative interviews 

aimed to evaluate the direct and indirect impact of the 

program. 

Study design and methods: By January 2011, all 

21 physicians will have completed semi-structured 

qualitative interviews six-to-nine months following 

the completion of the program (interviews were 

conducted October 2010 - January 2011). During the 

interviews, the physicians were asked to discuss any 

and all changes in their clinical practices, professional 

activities, presentation skills, networking activities, 

and stress management techniques as a result of the 

program. Grounded theory procedures were used to 

analyze for the common emergent themes. 

Results and conclusions: Results that will be 

91 


(Thursday)


(Thursday) 


presented include the most common topics discussed 

by physicians when describing clinical and 

professional practice changes since completing the 

training program. These results will provide 

information about the potency of such an 

international training program in regard to modifying 

physicians’ daily clinical and professional practices. 

Learning of these changes in a qualitative manner 

allows for a more detailed understanding of each 

physician’s personal perspective and can guide the 

development of additional programs in this area. 

Researchers may further benefit from utilizing this 

data for comparison when such residential programs 

are adapted for nurses, pharmacists, or other 

interdisciplinary palliative care team members. 



More Effect with Less... 

van Bommel M.J. 1 

1 Comprehensive Cancer Institute South, Palliative 

Care, Eindhoven, Netherlands 

In the South of the Netherlands we had a survey 

amongst general practitioners asking them about 

their knowledge concerning the possibility of short 

series of palliative irradiation in order to improve 

patient’s condition and quality of life. 

It revealed the lack of knowledge and the need for 

further education. 

That’s why we organized three conferences in which 

we not only discussed the knowledge needed about 

the possibility of short series of irradiation in various 

symptoms in palliative care, but also the possibility of 

telephone consultations with the radiotherapist. 

Also we reached a close collaboration between the 

radiotherapist and the palliative consultants. 

It may improve patients quality of life, because he 

needs less morfine f or paincontrol 

Vulto A, Bommel M van et al. General practitioners 

and referral for palliative radiotherapy; 

Radiother Oncol. 2009 May;91(2):267-70. Epub 2009 

Mar 25. 



What Do Junior Doctors Think about Opioid 

Treatment in Cancer Pain? 

Donea O. 1 , Lazar A. 1 , Negulescu L. 1 , Lazar F. 2 

1 Association for Mobile Palliative Care Services, 

Bucharest, Romania, 2 University of Bucharest, Faculty 

of Sociology and Social Work, Bucharest, Romania 

In Romania, Bucharest, a nongovernmental 

organization developed an educational program for 

attending physicians irrespective of their clinical 

specialty consisting in an 8 days interactive course (40 

hours). This represents a basic training in symptom 

control for cancer patients based on the European 

Association for Palliative Care curricula for 

physicians. The sessions cover communication with 

cancer patient, symptom control (pain, dyspnea, 

anorexia, cachexia, nausea and vomiting, anxiety and 

depression, delirium, constipation and diarrhea, the 

terminal cancer patient, parenteral hydration) and 

opioid legislation. Given the interest of junior doctors 

for this educational program that covered subject not 

covered by their regular training curricula, the 

organization extended the educational program to 

junior doctors whose training costs were covered by a 

pharmaceutical company.From October 2009 until 

June 2010, 110 junior doctors graduated of which 6 

were oncologists/ radiotherapists and 104 other 

specialties (geriatrics, family practitioners, lung 

physicians).Using a pretest and a posttest, we 

measured the difference in the answers that quantifies 

the change in the level of knowledge acquired during 

the course. At the beginning of the course 39,1% 

believed that there is an upper limit in morphine 

dosage for pain treatment of cancer patients and 

87,3% believed that first line opioids in chronic pain 

treatment are pentazocine and pethidine. After the 

course 91,4% answered that morphine has no 

maximum dosage if used for cancer pain treatment 

and 96% answered that morphine and fentanyl are 

the opioids of choice. These data show the need of a 

combination of basal information (no maximum 

dosage for opioids) with more profound knowledge of 

opioid prescription (the choice and management of 

opioids). These notions should be offered during their 

entire formation as physicians, integrated in the 

regular curricula, in order to obtain a proper pain 

treatment. 



Fear of Death among Medical Students and the 

Impact of End-of-Life Education (2005, 2010) 

Hegedus K. 1 , Zana Á. 1 , Konkolÿ Thege B. 1 

1 Semmelweis University, Institute of Behavioral 

Sciences, Budapest, Hungary 

Research aims: To explore the elements of fear of 

death of medical students and to compare the effects 

of end-of-life education to their attitudes to death in 

2005 and 2010. According to our hypothesis a more 

open communication about death and dying in 

society, health care and education may lead to lower 

level of fear of death among medical students in 2010 

in comparison to 2005. 

Study design and method: The Multi-dimensional 

Fear of Death Scale (MFODS) (Neimeyer and Moore, 

1994; Zana et al, 2006) was completed by 201 medical 

students before (N=93 in 2005; N=108 in 2010) and 

just after the 30-hour end-of-life training course 

(N=56 in 2005; N= 24 in 2010). (The data base of 2010 

will increase to May 2011.) The lecturers were the 

same in 2005 and 2010. 

Results: In both 2005 and 2010 medical students 

scored highest on Fear for Significant Others and Fear 

of the Dying Process factors. Fear of death is higher in 

women than in men (p< .001). Among dental 

students fear of death was higher than among medical 

students (p< .001). Contrary to our hypothesis the 

initial fear of death has not changed significantly 

between 2005 and 2010, but the positive effect of the 

courses was higher in 2010 than in 2005 (total score 

p< .001), mainly in relation to the Fear of the Dying 

Process and the Fear of Conscious Death factors. 

These factors especially can be attributed to 

improving knowledge related to palliative care of 

dying patients, emphasized more in the end-of-life 

courses in 2010. 

Conclusions: In the past centuries some elements of 

fear of death were low because of rituals and social 

care of the dying. At present these elements of fear of 

death show increased levels, but can be decreased by 

communicating openly about palliative care so 

improving the doctor-patient communication when 

working with dying patients. 



The Next Generation - The EAPC Research 

Network Junior Forum Would Like to Meet 

You 

Gretton S.K. 1 , Taubert M. 2 , Droney J. 3 , Schulz C. 1 , EAPC 

Research Network Junior Forum Working Committee 

1 St Peter’s Hospice, Palliative Medicine, Bristol, United 

Kingdom, 2 Cardiff University, Palliative Medicine, 

Cardiff, United Kingdom, 3 St Joseph’s Hospice, 

Palliative Medicine, London, United Kingdom 

Aims: The European Association for Palliative Care 

Research Network Junior Forum (Junior Forum) 

would like to present its role, ideas and expectations 

for the coming years to researchers from across the 

world, and use the Lisbon congress as a networking 

event. This poster will provide a focal point for 

existing members and interested congress delegates to 

get together and exchange ideas, projects and contact 

details. 

Design: We will outline the history, development, 

ambitions and future of the Junior Forum in a poster 

format. 

Results: The Junior Forum seeks to create a platform 

for education, communication and collaboration for 

junior researchers. Activity of the Junior Forum is 

designed to support those starting out in palliative 

care research and to provide access to a network of 

individuals who are undergoing similar experiences. 

Members from a wide range of countries have joined 

the Junior Forum and an e-mail discussion group 

amongst executive members is proving fruitful in 

strategic development for the future. Current projects 

include; 

Establishing terms of reference for membership of the 

group including roles and responsibilities of executive 

committee members; these will be made available 

online 

Dedicated Junior Forum meetings to be held at EAPC 

and EAPC Research Congresses with guest speakers 

and Question and Answer time 

An online forum for information exchange and 

feasibility to do this via EAPC Research Network 

website 

PhD, MD and MSc opportunities to be posted on 

EAPC RN JF website 

Determining ways of communicating information 

about the Junior Forum more widely, and use of social 

media to gain momentum for this movement 

Consideration for a secure EAPC RN JF webpage where 

members can post their research interests 

Generating a list/map of research experts across the 

world 

Conclusion: We would like to present ourselves at 

the Lisbon Congress and be able to reach out to new 

palliative care researchers worldwide. 

Source of funding: none declared. 



Refocusing Practice: An Evaluation of an 

Education Programme to Ensure a Common 

Foundation for Nurses and Healthcare 

Assistants in End of Life Care 

Doyle R. 1 , Chapman L.J. 1 

1 University of Liverpool, Marie Curie Palliative Care 

Institute, Liverpool, United Kingdom 

Background: A number of high profile reports at 

local and national level have identified gaps in basic 

knowledge and training for staff working with 

patients and families at the end of life. Four key areas 

for training were identified in the Department of 

Health Common Core Competencies in End of Life 

Care (2009): communication skills, assessment, 

symptom management and advanced care planning. 

In the education programme described in this paper, 

the emphasis was switched from advanced symptom 

management to encompass the basic skills required to 

care for patients and families at the end of life in an 

acute hospital environment, linked to the above 

areas. 

Aim: To assess the effectiveness of an education 

programme for generic trained nurses and healthcare 

assistants, focussing on 4 key areas. 

Method: A pre-course questionnaire was completed, 

examining confidence in managing end of life issues 

and knowledge of basic end of life care, including 

symptom control and the use of the Liverpool Care 

Pathway for the Dying Patient (LCP). A dedicated end 

of life training day linked to the set of core 

competencies for each staff group was undertaken 

and the questionnaire was then repeated 8 weeks later 

to reassess knowledge and confidence. The design of 

the questionnaire was such that staff could rate their 

own confidence levels but also answered a set of basic 

questions about symptoms and use of the LCP. This 

enabled a link to be made between perceived 

confidence levels and actual knowledge. 

Results: Pre-course questionnaires showed varying 

levels of confidence in dealing with both patients and 

their relatives at the end of life but a poor 

understanding of symptom management and 

communication related to the dying process. The 

paper will report on the comparison with the postcourse 

questionnaire. 



Capturing the Invisible: Exploring Deathbed 

Experiences in Irish Palliative Care 

MacConville U.M. 1 , McQuillan R. 2 

1 University of Bath, Centre for Death and Society, 

Bath, United Kingdom, 2 St Francis Hospice, Dublin, 

Ireland 

Background: Deathbed Experiences (DBE) is an 

umbrella term for phenomena such as deathbed 

visions in which the dying person reports seeing dead 

relatives or religious figures. DBE can have a positive 

affect, although occasionally they may induce fear. 

Although difficult to understand, there is sufficient 

evidence that these form a normal part of the dying 

experience although they are rarely discussed (Payne 

and Langley-Evans 1996). Barbato et al (1999) argue 

that it is part of the professional role of palliative care 

workers to normalise these experiences and to 

encourage patients and relatives to talk about any 

unusual event that occurs. 

Objectives: This study was conducted with members 

of the Irish Association of Palliative Care (IAPC) in 

order to record observations of DBE, the range of 

experiences and find out whether education about 

DBE would be beneficial for staff. 

Methodology: Questionnaire administered to 225 

IAPC members. Ethical permission granted April 

2010. The response rate 35%. Responses analysed 

using SPSS statistical analysis software. 

Results: DBE’s observed by respondents, or reported 


y patients or relatives, include patients having visions 

of deceased relatives (45%); 18% reporting visions of 

religious figures. Patients in a deep coma suddenly 

alert enough to say goodbye or communicate 

significantly with relatives was reported by 31% of 

respondents. 23% of patients experienced a radiant 

light. 42% of patients reported seeing people/animals 

or birds out of the corner of the eye—while frequently 

associated with drug/fever induced hallucinations, 

distinct qualities associated with DBE visions were 

identified. 76% respondents wish to receive further 

information and education about DBE. 

Conclusion: DBE appears to be a normal part of the 

dying process and can be comforting for many 

patients and relatives. Education about DBE would 

raise awareness of these experiences and help 

palliative care professionals to normalise them for 

patients and families. 



Working Alone Together! A Pilot Education 

and Support Programme for End of Life 

Facilitators 

Baldry C.R. 1 , Partington L. 2 , Betteley A. 3 



Kingdom, 2 East Cheshire Hospices Education, 

Winsford, United Kingdom, 3 Merseyside & Cheshire 

Cancer Network, Liverpool, United Kingdom 

Background: In the UK registered nurses are 

appointed as End of Life (EOL) Facilitators to work in 

either hospitals, care homes or the community setting 

and to facilitate the use of all three national End of 

Life Tools: Liverpool Care Pathway, Gold Standards 

Framework and Preferred Priorities of Care. These 

nurses generally move from a team environment to a 

‘lone worker’ role, are often unclear as to the nature 

and extent of their role, and receive little in the way of 

support and guidance. 

Aim: To provide a formal development and support 

structure using a small amount of funding from 

Merseyside and Cheshire Cancer Network. 

Method: An education and support programme for 

EOL facilitators was developed by, and rolled out as a 

pilot with, two experienced educationalists in the area 

leading the programme. After an initial brainstorming 

meeting an online survey was used to ensure the EOL 

facilitators were fully involved in shaping the pilot 

programme to meet their own needs. 15 EOL 

Facilitators took part over the first 12 months and met 

regularly to undertake formal (e.g. advanced 

communication skills) and informal (e.g. support 

group meetings) parts of the course. At the end of the 

12 month pilot a formal online survey of the EOL 

facilitators was undertaken to assess the impact of the 

programme. 

Results: The setting up, development and final shape 

of the programme is described in detail along with the 

results of the online survey feedback of the impact of 

the first 12 months programme completed by EOL 

facilitators themselves. The project was showcased at 

the first National EOL Facilitators Conference held in 

London in March 2010 and has been funded for a 

further year. 



Does ‘Opening the Gate’ Make a Difference? 

Results of the Initial Pilot of a Study Day to 

Raise Spiritual Awareness 

Baldry C.R. 1 , Groves K.E. 1 , Gaunt K. 2 

1 Terence Burgess Education Centre, Queenscourt 

Hospice, Southport, United Kingdom, 2 Mersey 

Deanery, Liverpool, United Kingdom 

Background: The spiritual care chapter of the NICE 

Supportive & Palliative Care Improving Outcomes 

Guidance 2004 states a very clear expectation that 

health professionals should be in a position to assess 

the spiritual and religious needs of patients and either 

meet these needs or facilitate others to do so. An audit 

across one cancer network in the north west of 

England showed that specialist palliative care 

professionals felt quite unprepared for this role. 

Aim: To see if a one day interactive course to raise 

awarenes of spiritual & religious needs of patients and 

families was effective in increasing staff confidence in 

this area of support. 

Method: In the process of developing a plan and 

materials for spiritual support education which could 

be rolled out across the cancer network, the one day 

course was run over a two year period as a pilot. Each 

participant was asked to complete a pre and post 

course questionnaire as well as a course evaluation. 

Results: This poster shows all the results of the 

compared pre and post course questionnaires and 

course evaluations. Many of the items suggest 

improvement from before the course to immediately 

afterwards e.g. pre course only 5% participants felt 

that they understood the nature of spiritual 

assessment very well, 31% quite well, 52% a little and 

11% not at all. After the course 57% participants 

scored the answer as very well, and 49% quite well. 

Pre course the mean visual analogue score for 

confidence in assessing spiritual needs was 3.72 and 

afterwards 6.66 (where 0 was no confidence). 

Conclusion: It appears that this course was 

successful in raising awareness and understanding of 

the nature of spiritual assessment and raises the 

confidence of participants in assessing spirituals 

needs. It remains to be seen whether the 

improvement is maintained once the participants 

return to the workplace. 



The Importance of Contexts in the Practice 

within the Development of the Skills of 

Nursing Students in the Area of Palliative Care 

Caseiro H.I. 1 



The formation students is based on the theorypractice 

articulation of knowledge acquired 

within academic context, emerged from the 

questioning of practice and study of that same 

practice.The care giving, should be ruled by technicalscientific 

accuracy, being of extreme importance the 

scientific evidence to guide the daily practice of 

Palliative Care teams in order to guarantee the quality 

of cares. Only t teams with quality contribute to a 

constructive developement of knowledge and skills of 

the student, allowing them in the action the 

integration and operationalization of the theory 

approaches they achieved. Through a in depth 

review of literature we propose to understand 

in which way curricula and 

education/learning in the initial training of 

nurses, value the theory-practice articulation 

as structuring element in the development of 

skills, and how it works in contexts.Regarding 

the results of the review of literature and of 

the knowledge of the operationalization of 

education/learning strategies, we thought of 

suggestions for the development of education 

in Palliative Care. It is also important of care 

contexts in scientific production of knowledge 

corpus, since it is the practices that allow to question 

and consequently to configure a new knowledge that 

is translated in the evolution and scientific 

recognition of the fundament of the care it self. 

Nursing education is focused in the student, in his 

development in order to be able to answer to 

professional evolution situations, structured in the 

action and when interacting with the other, within a 

social and symbolic dimension. We aim to reinforce 

the necessity of the investment in scientific training 

in this area and share our experience as teachers who 

join and monitor this training process in partnership 

with teams that enhance in the contexts the 

development of clinical learning. 



Medical Humanities and the Education of 

Doctors in the UK - A Review 

Johnson S. 1 , Johnson N. 2 

1 Hereford Hospitals NHS Trust, Palliative Care 

Department, Hereford, United Kingdom, 2 University 

of Warwick Medical School, Institute of Clinical 

Education, Coventry, United Kingdom 

Background: Medical humanities and palliative 

medicine are both concerned with the ‘whole person’ 

as their primary focus of attention. They also require 

that the whole person of the caregiver is also involved, 

encompassing the doctor as both scientist and 

humanist. If medical humanities can educate for a 

more humane doctor, it could also be a useful 

approach in undergraduate and postgraduate medical 

education. 

Aims: To understand how medical humanities are 

being included in the education of doctors in the UK 

at undergraduate and postgraduate level. To evaluate 



the evidence on how the teaching interventions 

described have an impact on medical education. 

Search strategy: Electronic databases were searched 

using a specific search strategy. Bibliographies of 

selected texts, journals and books were hand 

searched. Relevant websites were also included in the 

search. 

Selection criteria: Eligible citations for inclusion 

were those that reported on an educational 

intervention, in which defined medical humanities 

were used, where medical students or postgraduate 

medical doctors were taught. They had to be UK 

studies and English language. 

Data collection and analysis: Selected citations 

were appraised and data was analysed and synthesised 

using qualitative methods. 

Results: The search yielded 33 educational 

interventions describing undergraduate and 

postgraduate courses and university programmes. 

Thematic analysis revealed five themes comprising: 

1. Justification and motivation for medical 

humanities based educational interventions. 

2. Engagement with medical humanities based 

educational interventions 

3. Teaching methods and tutors. 

4. Outcomes and evidence of change 

5. Areas of compromise. 

Conclusions: The various ways in which medical 

humanities are being included in medical education 

in the UK and the evidence of its impact is described. 

Challenges to further evaluation and research are 

discussed. 



Get Better Results by Searching the 

Knowledge Network of Palliative Care 

Giesen-Nijenhuis C. 1 

1 Agora National Centre for Support for Palliative Care, 

Bunnik, Netherlands 

Background: Using a general search engine often 

results in getting many unwanted, random and less 

relevant hits. There is a need for a better structuring 

and for a better overview of good, available 

knowledge in the field of palliative care. 

Aims: Using the search engine of the knowledge 

network of palliative care 

(www.kennisnetwerkpalliatievezorg.nl), target groups 

can acquire access to relevant information about 

palliative care. Searching will become easier. In this 

way, knowledge about palliative care will become 

more widespread and more efficiently shared. 

Methods: Sites containing information about 

palliative care have been selected. These sites have 

been made searchable and assembled into a search 

engine. There are various user profiles available for 

patients, students and carers. Decisions about adding 

new sites and appearance order of the sources and 

changes in the links between user profiles and content 

will be taken within the knowledge network in 

consultation with experts. 

Results: 

The search engine integrates existing sources of 

knowledge into a virtual whole. It shows only those 

results from the field of palliative care. Different types 

of user have been identified. Filters enable the proper 

information to be found more quickly. [Users] 

On participating sites, users can search through the 

whole domain of palliative care using the search 

engine of the knowledge network. [Partners] 

Using the knowledge network, the use of the search 

application and profiles can be analysed resulting in 

improvements in the quality of the product. 

[Administration] 



Education (Master Course) in Palliative Care: 

Do the Different Professional Groups Have 

Different Marks? 

Capelas M.L. 1 , Flores R. 1 , Guedes A.F. 1 , Pingarilho M.J. 1 , 

Roque E. 1 , Paiva C. 1 



Aim: To analyse if there are different marks between 

the professional groups at the Master Course in 

Palliative Care. 

Methods: 

· We used the marks (0-20 values)of the students of 8 

Master Courses in Palliative Care of the Catholic 

University of Portugal 

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· We analysed/compared 8 curricular units (CU), 1 

sub-curricular unit (“pain control”) and the final mark 

· We organized the professions in 4 groups 

(physicians, nurses, psychosocial that included 

psychologist and social workers and, finally one group 

with others professions). 

Results: 

· There weren’t differences between the professional 

groups at the final mark (p≥0.05) 

· There were differences of the marks in the CU- 

Symptom Control, the CU-Pain Control and the CU- 

Spirituality Approach (p< 0.05) 

· In the CU-Symptom Control the physicians 

(17.2±1.1) and the nurses (16.7±1.6) had higher 

mark than the psychosocial group (15.6±1.6) [p< 

0.05]; we didn’t find any other differences 

· In the sub-CU-Pain Control the physicians 

(16.7±1.9) had higher mark than the nurses 

(15.9±2.1) and than the psychosocial group 

(14.6±2.3); the nurses had higher mark than the 

psychosocial group and than the others; 

· In the CU-Spirituality Approach the physicians 

(16.8±1.3) had higher mark than the “others group” 

(15.9±0.7). 

Conclusions: 

· Although that there weren’t differences on the final 

mark between the professional groups we found 

differences in three curricular units and at these the 

physicians had the highest marks 

· The Master Course in Palliative Care that we studied 

promotes equal opportunities to the success of the 

different professional groups of his students 



Supporting the Setting up of a Tertiary 

Palliative Care Service. Positive Reflections on 

Reaching out between an Established Service 

in the UK and a New and Developing One in 

Pakistan 

Midgley C.J. 1 , Hafeez H. 2 

1 Saint Francis Hospice, Palliative Medicine, Romford, 

United Kingdom, 2 Shaukat Khanum Memorial 

Cancer Hospital and Research Centre, Palliative Care, 

Lahore, Pakistan 

In 2008 a new Consultant in Internal Medicine was 

appointed to a busy cancer centre in Pakistan. He 

found himself providing predominantly palliative 

care, alongside a skilled but small palliative nurse 

team. This was recognised. He was made Consultant 

Lead for Palliative Care, and supported to enrol on a 

UK Diploma course and to do a 6 wk locum registrar 

spell in a UK hospice for professional development. 

The relationships forged led him to request continued 

connecting with the hospice Consultant, through 

SKYPE, for one hour per month, once back in 

Pakistan. This to allow reflection on complex cases, as 

he had no local Consultant to do this with. 

We started connecting 2 years ago, achieving 11 x 1 

hour sessions per year, discussing on average 2 cases 

each time. The sessions soon widened to include the 

MDT in Pakistan, and an educationalist/Nurse 

Specialist in the UK hospice. 

For Pakistan it has been so useful to discuss difficult 

symptom control and emotional challenges with an 

experienced physician, with, over time, real gains in 

patient, family and staff comfort and support. Sharing 

of working, evidenced policies has been invaluable. 

Our connection has enabled a more powerful 

lobbying to politicians regarding access to controlled 

drugs, and armoury for Consultant and team to 

pursue UK established initiatives like the Liverpool 

Care Pathway. For the UK we have learnt from the 

imaginative ways the team overcome the many 

practical challenges in Pakistan, particularly in 

support of people at home, often involving real 

engagement with families in care delivery. We have 

been impressed by the willingness of anaesthetists, 

surgeons, physicians, radiographers and ward teams 

to work together, quickly, towards best comfort care. 

It has enhanced own case management; we are more 

including of families, and understand more those we 

care for with international connections. We 

recommend this as a manageable and rewarding way 

to support international palliative care development. 



The Leadership Development Initiative: 

Preliminary Results of Physician and Mentor 

Qualitative Interviews 

Montross L.P. 1 , Moore S. 1 , Yang H. 1 , Ferris F.D. 1 



Background and aims: The Leadership 

Development Initiative was created with the purpose 

of enhancing leadership skills among international 

palliative care physicians in order to globally advance 

the field. This two-year program provides three 

residential training sessions, designates field mentors, 

and offers unique opportunities for global 

networking. Qualitative interviews performed 

immediately following each residential session aim to 

identify the physicians’ personal leadership 

development and inform future programmatic 

enhancements. 

Methods: After completion of the first residential 

session, 25 semi-structured qualitative interviews 

were completed with the program’s physicians (n=21) 

as well as the designated field mentors (n=4). During 

the interviews, the respondents were asked to discuss 

leaders they admire, their personal leadership style, 

their greatest needs, and their most prominent fears 

about the program. Utilizing grounded theory 

procedures, analyses of the common emergent 

themes were completed. 

Results: The most common themes among the 

physician participants were: 

1) admiring inspirational and organized leaders of 

strong moral character, 

2) self descriptions of compassion, resilience, and 

commitment, 

3) the need to learn time and conflict management 

skills, and 

4) fears of decreased personal time, diminished 

clinical practice, or tapering financial gains due to 

leadership pursuits. 

The most common themes emergent in the mentor 

group were: 

1) admiring mentors who had become personal 

friends over time, 

2) self descriptions of compassion and confidence in 

successfully handling challenges or conflict, and 

3) the need to connect with other program mentors. 

Conclusion: These results can help educators more 

fully understand the topics most frequently discussed 

by emerging palliative care physician leaders and 

mentors. Such results may serve as a foundation for 

the creation of additional leadership curricula in this 

area. 



Hospice Twinning - And the Role of Education 

Needham P.R. 1 , de Leeuw W. 1 , Isac V. 2 

1 Dorothy House Hospice Care, Bath, United 

Kingdom, 2 Hospice Africa UgandaAngelus, Chisinau, 

Moldova, Republic of 

Inspired by presentations on several hospice twinning 

projects during the 2007 Help the Hospices 

conference, Dorothy House Hospice (Bath, England) 

embarked on a twinning arrangement with the newly 

developing hospice team (Hospice Angelus) in 

Moldova. This was supported by the UK based charity 

Hospices of Hope. A decision from the outset was to 

focus on the provision of education. 

One of the initial concerns of the UK team was how 

best to utilise and adapt the educational skills 

acquired over the 33 years of their existence in order 

to meet the needs of the Hospice Angelus staff in their 

unique setting. 

The teaching methodologies which were employed in 

order to meet the Moldovan teams’ individual and 

joint needs, not only as practicing clinicians but also 

as future educators, were broad-ranging. These 

included case reflections following joint visits, small 

group work around realistic case scenarios, the 

development of a manual handling CDRom, the use 

of role play (with its challenges of language 

interpretation and understanding of cultural 

expectations), alongside modelling multidisciplinary 

team working. Additionally, advice was provided on 

the planning, as well as active participation in, the 

national conference for Moldovan family doctors 

organised by Hospice Angelus and held during one of 

the week long visits by Dorothy House staff. 

We will also summarise Hospice Angelus staffs’ 

evaluations of the input. 

Overall it has been extremely rewarding to see how 

both teams have gained, both personally and 

professionally, from the project. 



Rescued but Abandoned: Supportive Care for 

Cancer Survivors 

Webb P.A. 1 

1 St. George’s University of London, Faculty of Health 

and Social Care Sciences, London, United Kingdom 

Terminology can be confusing and can compromise 

high quality care being achieved. Supportive 

care/palliative care for cancer survivors is essential 

now that so many new treatments have been 

developed. However, to ´rescue´ someone with 

successful first-line cancer treatment and then to 

abandon them once they have survived is 

inexcusable. Palliative care for what has become a 

long-term condition is essential for both the patient 

and their family 

Aim: To develop and evaluate a module on cancer 

survival with postgraduate students of all disciplines 

in healthcare. 

Design: An interactive teaching model to address: 

Impact of life threat on human beings 

Human stategies for survival 

Application of philosophy and strategies to cancer 

Development of policies and practice to enable 

supportive care for cancer survivors 

Teaching was through analysis of general literature 

and addressing Problem Based Learning of real cancer 

survivors´ journeys. 

Results: Clarifying the meanings of many 

terms/labels for describing palliative and supportive 

care through literature searching,discussion and 

problem-based learning and applying this to 

individual participants´ practice, changed the 

perception of dealing with cancer survivors. 

Innovative assessment of learning through a portfolio 

of real cases and the presentation of a proposal for 

practice development consolidated learning and 

produced practice and policy development for this 

group of patients. 



An Evaluation of the Consultants with 

Another Special Interest (CWASIs) in 

Palliative Medicine Education Program 

Benson D. 1 , Munday D. 2 , Gakhal S. 2 , Barnett M. 2 , Webb 

D. 3 

1 Marie Curie Hospice, Solihull, United Kingdom, 

2 Warwick University, Warwick Medical School, 

Coventry, United Kingdom, 3 John Taylor Hospice, 

Birmingham, United Kingdom 

Introduction: Evidence suggests that care of the 

dying in UK hospitals can be poor. This may reflect a 

lack of formal undergraduate and postgraduate 

medical education in palliative care. Consultants in 

all clinical specialties should have the appropriate 

skills to deliver good palliative care and to provide 

clinical leadership and training in end of life issues for 

their junior colleagues. 

A one-year training program was developed to 

increase the palliative care skills among consultants 

working with dying patients. It was piloted with 6 

participants (2 respiratory physicians; 1 cardiologist; 1 

geriatrician; 1 intensivist) in 3 teaching hospitals. The 

programme included group discussions, mentoring 

and observation of practice by experienced palliative 

medicine specialists. 

Mixed method evaluation was undertaken. We report 

on the participant experience and educational 

outcomes. 

Method: A self-assessment tool was developed to 

measure participant confidence in physical, 

psychological and social aspects of end of life care. It 

was completed at 0, 6 and 12 months and trends in 

response were measured. 

Semi-structured interviews were undertaken at 0, 6 

and 12 months. These explored participants’ 

motivation for undertaking the programme; learning 

styles; facilitators/barriers to successful completion; 

and whether educational objectives were met. 

Thematic analysis was used to determine participants’ 

views of this model of education to their clinical 

practice. 

Results: The self-assessment tool showed increased 

confidence in all domains. Participants reported that 

the course was highly relevant to clinical practice and 


had enabled them to develop end of life care within 

their own teams. Potential areas for improvement in 

course structure were highlighted. 

Conclusions: Confidence in knowledge and skills in 

end of life care of hospital consultants can be 

enhanced through a training program. The longterm 

translation of such training into practice should be 

explored in a future study. 



Supporting Improved End of Life Care in Care 

Homes through an Innovative Model of 

Education 

Lansdell J. 1 

1 St Catherine’s Hospice, Crawley, United Kingdom 

Background: End of life care in the UK is provided 

by generalists, often in the care home sector. 

Inadequate training and support can lead to 

suboptimal end of life care in care homes. The 

development of measureable competencies supported 

by education is essential to improve care delivery. This 

relies on partnership working as a hospice model is 

not directly transferrable to the care home 

environment. 

Aim: To improve end of life care in care homes in a 

sustainable way through the development of core 

competencies supported by education. 

Method: This pilot project involved hospice staff 

working in partnership with four local care homes. 

Year one developed a competency framework within 

each individual home informed by focus groups. Year 

two analysed competencies and identified key issues 

for inclusion in a five-day training programme, 

tailored to address these issues in the broader context 

of palliative care. 15 care home staff attended the 

course, feeding back learning in their respective 

homes. The impact of the course on end of life care 

delivery was considered. Year three incorporated the 

competencies into staff appraisal systems. Senior care 

home staff were trained to assess competence, 

promoting sustainability of the project. 

Results: Engaging care home staff in the 

development of competencies and identification of 

educational need is essential to ensure a tailored, 

relevant programme. Effective measurement of 

competence is achieved through appropriate 

assessment linked to staff appraisal. Opportunities for 

sharing learning throughout the process should be 

identified at an early stage. 

Conclusion: Developing a competency framework 

demonstrates an ongoing commitment to the 

development of staff and ultimately care home 

services, when supported by a tailored package of 

education, delivered in partnership with a local 

hospice. 


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Improving Public Awareness of End of Life 

Issues with and among Older People: A Peer 

Education Approach 

Froggatt K. 1 , Capstick G. 1 , Coles O. 1 , Jacks D. 1 , Lockett S. 1 , 

McGill I. 1 , Robinson J. 1 , Ross-Mills J. 1 , Matthiesen M. 2 

1Lancaster University, Lancaster, United Kingdom, 

2Conversations for Life, Staveley, Kendal, United 


Background: Public awareness initiatives in end of 

life care are being promoted in England within 

national strategies around end of life care. Whilst 

recent activity has been undertaken nationally to 

survey public attitudes regarding dying and death, 

there are also more local initiatives being undertaken 

engaging with different sectors of the population in 

new and creative ways. Building upon previous 

projects undertaken in England, a locally based group 

of researchers and older adults has sought to develop 

further resources and skills within one locality. 

Methods: An action research framework was adopted 

for the study, with older people and an academic 

researcher working collaboratively to undertake two 

strands of work. Phase 1 entailed the development of 

a personal portfolio to record individually tailored 

information and resources pertaining to future care 

needs towards the end of life. In Phase 2, two public 

end of life workshops for older members of the 

general public and their advocates were held to raise 

the public awareness around end of life issues and 

identify future needs for information. 

Findings: The portfolio was successfully developed. 

It comprises eight sections to record personal 

information and preferences about current and future 

health and social care needs. It has been piloted and 

further amended to reflect feedback. The community 

workshops had a three part structure that addressed 

what needs to be planned for, how to begin planning 

and how to talk bout these issues with other people. 

Personal stories and facilitated table discussions were 

used to involve all participants. Thirty five people 

attended the two workshops: 22 older adults and 14 

health and social care professionals. 

Conclusions: There is interest and need for further 

work around the portfolio and public engagement. 

Future programmes of work have been identified 

within the locality building upon these experiences. 



Palliative Medicine a Specialty in Venezuela 

Bonilla P. 1 , Gonzalez T.W. 1 , Hidalgo M. 1 

1 Instituto Oncologico Dr. Luis Razetti, Palliative Care, 

Caracas, Venezuela 

Palliative care represents a complex and 

multidisciplinary area of medicine that must be 

provided by trained physicians, because the 

indication of therapeutic interventions in this field, as 

well as evaluating the risks and benefits of the latter, 

may arise against a patient at any stage of their 

disease. It can only be done properly under the 

framework of scientific knowledge and ethical 

responsibility to the discipline. 

For all these reasons it was necessary to create in 

Venezuela the specialty of palliative medicine, this is 

how a proposal was made and accepted by the 

Venezuelan Ministry of Health in January 2009 

General objective: Palliative Medicine Specialists 

formed with sufficient knowledge for an adequate 

performance in each stage of patients with advanced 

and progressive diseases, until the time of death. 

Curriculum: The degree must be completed in a two 

years period, divided into six academic periods of four 

months each. In this two years, the student must pass 

a total of 166 credits, distributed in 76 theoretical 

credits and 90 practical credits. 

At the end of the professional training program of 

Palliative Medicine, the student will be able to 

recognize, diagnose and treat all the physical 

symptoms, emotional, spiritual needs of patients and 

their families. They will also learn to use the 

equipment and care about it, develop a proper 

research, manage and administrate Palliative Care 

medical areas. 

Conclusions: Specializing in Palliative Medicine has 

created a great impact in Venezuela, allowing a greater 

number of interested medical workers to participate 

and creating high competition levels. 

Moreover, the State had been in the obligation to 

create specific job places for the new specialists which 

are recognized by the Health Ministry. 



Sexuality (SXY) in Palliative Care (PC): Are 

there Barriers to Tackle? Survey on 20 

Professional Team Members (TM) 

Grance G. 1 , Pérez M. 1 , Fernández D. 1 , D´ Urbano E. 1 , De 

Simone G. 1,2 

1 Asociación Pallium Latinoamérica, Buenos Aires, 

Argentina, 2 Universidad del Salvador, Buenos Aires, 

Argentina 

Introduction: SXY defines the meaningful 

relationships people have with themselves and 

significant others: emotional connection to others 

takes precedence over physical expressions. Studies 

show that many patients value SXY and want 

assistance in making the best of their sexual potential 

during the PC phase and disease also impacts upon 

SXY of carers in a couple relationship with a patient 

(PAT). Different barriers are mentioned in terms of 

embracing SXY, including difficulties in professional 

TM. During the last 5 years, as part of their annual 

diploma training in PC, our students had identified 



SXY as an important but difficult area to explore. 

Aim: To assess skilled TM of PC teams about their 

perspectives on SXY and competences in dealing with 

their PAT and couples´ needs on SXY. 

Materials and methods: A structured 

questionnaire with 7 questions has been asked to 20 

professional TM of PC teams involved in a master 

course (most of them doctors). Questions referred to 

how important TM consider SXY needs are for their 

PAT and couples, how often TM ask about SXY to 

them, how much competence TM consider to have 

for dealing with PAT (and couples) SXY. 

Results: It emerges that: 

a) all TM scored SXY to be high (10/20) or moderate 

(10/20) important for PAT; 

b) 12/20 of them answered that PAT seldom asked 

them about SXY needs; 

c) 14/20 of TM answered that they never (1/20) or 

seldom (13/20) asked their PAT about SXY; 

d) 19/20 of them answered that PAT couples seldom 

asked them about SXY; 

e) 9/20 of TM referred that they never (3/20) or 

seldom ( 6/20) asked PAT couples about SXY needs; 

f) all TM considered SXY to be a highly important 

(16/20) or important area (4/20) to embrace; 

g) 14/20 of TM referred they have low competence 

(13/20) or medium competence (6/20) to deal with 

SXY in PC practice. 

Conclusions: We think it is time to modify our 

educational approach on SXY to best meet 

professional needs in relation with daily practice, 

considering the complex dimensions of the concept. 



Physiotherapy in Palliative Care - A Clinical 

Handbook 

Frymark U. 1 , Hallgren L. 1 , Reisberg A.-C. 1 

1Stockholms Sjukhem Foundation, Stockholm, 

Sweden 

Background: During their working life most 

physiotherapists will meet patients in advanced stages 

of disease and at their end of life. Despite this fact a 

survey, administered to all physiotherapy education 

institutions in Sweden in 2006, showed that students 

were given no education in palliative care. To the best 

of our knowledge there was no textbook or handbook 

available on the subject. 

Aim: Our aim was to write a clinical handbook as a 

tool for both physiotherapist students and 

physiotherapists who lack experience in treating 

patients in palliative care. The handbook should also 

be accessible and useful for other professions. 

Method: Physiotherapeutic interventions that are 

commonly used within palliative care formed the 

base of a literature search conducted in the databases 

Cochrane, Medline and Pedro. Evidence was searched 

regarding interventions for the treatment of following 

symptoms: physical weakness, fatigue, pain, oedema, 

anxiety, nausea, dyspnoea. 

Result: The scientific evidence for physiotherapeutic 

interventions in late palliative care varies from strong 

to very weak. Even when the clinical evidence for 

effectiveness of an intervention is strong it is not 

always proved scientifically. A handbook of 

physiotherapy in palliative care was produced 2009 

based on our literature search and clinical 

experiences. Copies of the handbook were sent to 

physiotherapy students in all educational institutions 

in Sweden. A follow-up of palliative care education in 

physiotherapy educational institutions will be carried 

out during spring 2011. 



Introducing a Foundation Degree in Palliative 

Care into the UK: A Pilot Project between 

Hospices and Higher Education Institutions in 

Developing the Assistant Practitioner Role in 


Bass M.A. 1 , Driscoll P. 2 

1 St Nicholas Hospice Care, Education, Bury St 

Edmunds, United Kingdom, 2 University Campus 

Suffolk, School of Nursing, Midwifery and 

Interprofessional Studies, Ipswich, United Kingdom 

Background: The future of the NHS workforce in 

the UK is set to change due to economic and 

population changes. There will be a shortage of 

registered nurses from 2020, therefore investment is 

needed to develop and support a trained health care 

support worker (HCSW) role (these are not registered 

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practitioners in the UK) called the Assistant 

Practitioner (AP) Role. These undertake a 2-3 year 

Foundation Degree course to develop skills and 

knowledge along a chosen specialist pathway. The AP 

role is becoming more widespread in the UK. 

Aim: The work was started by gaining a grant jointly 

from Help the Hospices (a UK member organisation 

for hospices) and Foundation Degree Forward. This 

was given to three pilot sites only, one of which was St 

Nicholas Hospice Care, un Suffolk, UK. The money 

was given to achieve two outcomes: 

1. Introduce the AP in palliative care role to our 

hospice 

2. Produce and validate a Foundation Degree in 

Palliative Care (FDPC). 

Methods: First of all the outline of the AP role was 

discussed and decided on by the clinical managers 

group. The role was then finalised and is awaiting job 

evaluation within the hospice. This helped to lead the 

development of the FDPC. 

The project lead worked with the local university 

(University Campus Suffolk) to produce another 

specialist pathway on the already established 

Foundation Degree programme in healthcare. 

Results: The FDPC was successfully validated in 

October 2010 and will commence in January 2011. 

Our pilot was the only one of the three which 

managed this successfully within the time frame. 

Conclusion: Learning points from the project 

included: 

• Defining what the AP role would look like in 

palliative care 

• Understanding the impact on the organisation as a 

whole from workforce development 

• Recognising the importance of investing in the FD 

and AP role because of the workforce changes due to 

develop in the UK. 



The Body-mind Support Program for Cancer 

Patients - The Effects of Yoga/Stretching and 

Hand and Foot Care Classes 

Yoshida M. 1 , Morita M. 1 , Higuchi Y. 1 , Suzuki H. 1 , Oiyama 

E. 2 , Yorimori A. 1 

1 The Japanese Red Cross College of Nursing, Tokyo, 

Japan, 2 Shizuoka Cancer Center Hospital & Institute, 

Shizuoka, Japan 

Purpose: This study is part of our ongoing 

examination of the effects of a comprehensive 

support program for cancer patients. The program 

included a seminar for patients, a newsletter, a 

support cafe, a support group, a yoga and stretching 

class, and a hand and foot care class. In this study, we 

examined the effects of the yoga and stretching and 

hand and foot care class. 

Methods: Forty people registered in the program, 

which was held for a period of 1 year (June 2007 to 

June 2008). Twelve people participated in the yoga 

and stretching class, and 15 people participated in the 

hand and foot care class. Program evaluation using 

the Profile of Mood States Brief Form (POMS) and an 

original questionnaire was conducted before and after 

every session. 

Results: The yoga and stretching class comprised 20 

sessions. The hand and foot care class comprised 65 

sessions. In both the yoga and stretching and hand 

and foot care classes, POMS scores (Tension-Anxiety, 

Anger-Hostility, Vigor, Fatigue, Confusion) were 

significantly improved after the class as compared to 

before the program. Participants in both classes 

expressed a high degree of satisfaction; 93% of 

participants responded that the yoga and stretching 

class helped them to manage their stress, obtain a 

better understanding of their bodies, and feel relaxed, 

and they felt that the classes were valuable and helped 

them to heal. 

Conclusion: The present results suggest that the 

yoga and stretching and hand and foot care classes 

improved the self-esteem and healing of participants, 

and that this aspect of the comprehensive body-mind 

program was effective in supporting the active lives of 




Palliative Care in Armenia: Needs in 

Professional and Public Education 

Tadevosyan A. 1,2 , Connor S. 3 , Karapetyan H. 2 

1 Yerevan State Medical University, Public Health, 

Yerevan, Armenia, 2 Pain Control and Palliative Care 

Association, Yerevan, Armenia, 3 Worldwide Palliative 

Care Alliance, Fairfax Station, VA, United States 

Background: Although the Armenian health care 

system has been in the process of reform for twenty 

years, not much change has occurred in palliative and 

hospice care. On the way toward establishing 

palliative care services in Armenia there have been 

several barriers and obstacles including low public 

awareness, lack of professionals, absence of training 

centers, and special curriculum for physicians and 

nurses, psychologists, and social workers. 

Aim of this study is to evaluate level of public 

awareness on palliative care, how is it wanted and 

accepted publically. 

Design and methods: Expert’s group was 

interviewed to evaluate needs in palliative care, level 

of knowledge family member’s, willingness to get 

palliative care in different settings. Curricula of 

medical university, nursing colleges, departments of 

psychology and social work of different higher 

education institutions are analyzed. 

Results: Majority of population is not familiar with 

the term palliative care. After brief introduction they 

accept the idea, however disagree about setting where 

care must be provided. All experts indicate lack of care 

provided to terminally ill patients and emphasis the 

importance of professional interdisciplinary team. 

Misunderstanding and prejudice are serious obstacles 

for organization of palliative care especially for 

children. There are no any systematic programs for 

public education or for training in basics of palliative 

care for family members or other informal caregivers. 

There are no special professional programs both for 

medical specialties including physicians and nurses, 

and other related professionals. 

Conclusion: There is urgent need to develop 

programs for professional education both in medical 

(physicians and nurses) and related specialties - 

psychologists, social workers, population awareness 

rising and training programs and establishment of the 

chain of training centers for patient’s family members 

and other informal caregivers. 



New Voices in Nursing Education 

Persson C.I. 1 , Leveälahti H. 2 

1 Karolinska Institutet, Neurobiology, Care Sciences 

and Society, Huddinge, Sweden, 2 Stockholms 

Sjukhem Foundation, Research & Development Unit / 

Palliative Care, Stockholm, Sweden 

Palliative care (PC) staff today is confronted with new 

demands and responsibilities which demand 

corresponding changes in their education. The 

growing body of relevant research with a need to 

evidence-base practice calls for developing strategies 

for life-long learning. Another challenge is that 

palliative nursing education initiatives generally 

develop in academic contexts not linked to clinical 

practice settings. Inspired by presentations from St. 

Christopher’s hospice at the Vienna EAPC 2009 

conference, a 7,5 HP web-based palliative nursing 

course was designed in collaboration between a 

university and a PC facility. The course is based on a 

narrative pedagogic approach; narratives from three 

diverse perspectives— a patient perspective, a family 

perspective and a professional perspective— form the 

basis for course assignments. Narratives are a powerful 

way for students to examine their own knowledge, 

values and attitudes whilst also stimulating problemsolving 

and enabling incorporation of change in 

practice. The students reflect individually and in 

seminar-groups, with the latter allowing 

consideration and examination of students’ preunderstandings. 

The course has been held twice, 

evaluated positively with the pedagogical approach 

particularly praised by students. From an educational 

perspective, the approach has been successful as a way 

to integrate clinical practice and education. 



An Evaluation of Undergraduate Palliative 

Care Teaching at the University of Cape Town 

Barnard A.J. 1 


Town, South Africa 

Palliative Care education is a new and important 

element of undergraduate teaching in the public 

health and family medicine block during the fourth 

year of study at our University which is situated in a 

developing country. This programme aims to teach 

both an approach and a specific management plan, 

and uses a novel integrated teaching method which 

requires evaluation to establish whether it is effective 

in its goal of meeting the learning objectives. The 

need for palliative care education is well established, 

but limited opportunities on the undergraduate 

medical timetable present teaching and learning 

challenges. It is vital that every opportunity to learn 

and teach is used to the full and that the benefit of 

reflective learning translates into reflective practice 

with life-long benefit. 

A mixed method study, both qualitative and 

quantitative, examines the efficacy of the teaching 

programme at conveying the palliative care approach, 

and the application of this approach and knowledge 

after a full morning tutorial in palliative care. The 

students who agreed to participate were recruited after 

informed consent was obtained, and their anonymity 

was ensured. The protocol was approved by the 

University Research Ethics Committee. 

The presentation will describe the novel teaching 

approach from learning objectives to teaching 

techniques and assessment methods and present the 

results of an inductive qualitative analysis of the 

student assignments and reflective commentary. In 

the presentation, the voices of the students will 

explain the importance of this learning. The 

effectiveness of the teaching will be demonstrated in 

the quantitative results. 

This work is particularly important and relevant to all 

those interested in developing palliative care 

education, particularly in resource constrained 

settings, but the methods may be applied in any 

setting, especially where there is limited time in the 

curriculum for palliative care. 



Developing the First Blended Palliative Care 

Course in Romania 

Stanciulescu L. 1 , Mosoiu D. 1 , Gorog I. 1 

1 Hospice Casa Sperantei, Brasov, Romania 

Aim: To describe the steps undertaken in 

development of the first blended palliative care (PC) 

course to fit the national context. 

Method: Self completed survey of doctors and SWOT 

analysis of the potential PC course done by national 

PC trainers. 

Results: SWOT analysis shows as strong points: 

increased access for a large number of participants, 

flexibility of learning hours, the credibility in 

education of the course organizers, the CME points of 

the course, the blended form, and reduced cost. 

Weaknesses: lack of experience in online training, 

challenges in teaching attitudes and abilities on line, 

technical difficulties, managing the web platform. 

Opportunities: increased need for PC training due to 

legal changes, no other such courses on the market, 

good links with the university. Threats: internet 

access and computer skills vary in different regions 

and different age groups, administrative barriers 

(delays in releasing the certificates), unpredictable 

course enrollment. 

The doctors’ survey comprised 54 local doctors and 

148 from the country with a response rate of 54%. 

88% of respondents would like to take part in an online 

course because they need education in PC 

(41,2%), flexibility of the program (23,5%), no need 

to leave home for training (2,9%) Pain, 

communication, digestive problems, ethics, terminal 

care, neuropsychiatric problems and respiratory 

problems were of interest for over 75% of 

respondents. 

Conclusion: This is an appropriate time for starting 

such an education program in our country. There is 

interest for attending from surveyed participants and 

for the proposed subjects. 



Ethical and Moral Education as an Strategy to 

Improve Palliative Care 

Geovanini F.C.M. 1 , Paranhos G.K. 1 , Alencastro I.M.D. 1 , 

Correa C.D. 2 

1 FIOCRUZ - Fundação Oswaldo Cruz, ENSP - Escola 

Nacional de Saúde Pública, Rio de Janeiro, Brazil, 

2 Marinha do Brasil, Rio de Janeiro, Brazil 

Objective: To present reflections on the paper of 

moral and ethical education in medical graduation. 

Methods: Systematic review of the literature in an 


electronic data base (BIREME) about ethical and moral 

education during medical formation. 

Results: In the last decades emphasis was given in 

medical schools to the improvement of technicianscientific 

qualification of pupils, in detriment of 

development of ethical and moral formation. But 

medicine is not capable of, only using the technicianscientific 

resources, give account to the extended 

concept of health. Ethical conflicts, many of them 

result of the development of this scientific medicine, 

as therapeutic futility, definition of terminality and 

respect of patient´s autonomy, became frequent in 

practical medicine, revealing an unpreparedness to 

deal with these new challenges. As these subjects are 

current in palliative care, an ethical formation is 

essential for the implementation of a program in this 

area.The teaching-learning process can be an 

important canal of influence in moral behavior of 

students, improving morally desirable values and 

behaviors. As moral development improves in a 

continuous form, we must think about the role that 

professors have on the capacity of adult individuals to 

judge moral acts. The search for the development of 

individuals´ capacities to carry through independent 

judgments and moral acts, must be an assumed 

commitment for direction and teaching staff of 

graduation and posgraduate courses. Important 

aspects must be considered in the recast of education, 

such as: transversal way of teaching, the methods and 

strategies, the paper of teachers and thefoundation of 

ethics teaching and moral education. 

Conclusion: We believe that an education directed 

toward the development of the capacity of students´ 

moral judgment allied with transversal bioethics 

teaching, may contribute for the development of a 

palliative care program.This study did not receive 

financial support. 



Coordinated Regional Program of Palliative 

Education 

Hoenger C. 1 , Porchet F. 2 , Teike Lüthi F. 2 

1 Service de la Santé Publique du Canton de Vaud, 

Lausanne, Switzerland, 2 Centre Hospitalier 

Universitaire Vaudois (CHUV), Lausanne, Switzerland 

Context: One of the aims of the palliative care (PC) 

Cantonal Program (CP) of public health, Vaud 

Canton, consists of enhancing the professionals’ 

competencies. Professionals and volunteers’training 

contributes to the PC development and diffusion and 

improves the clinical practiceUndertaken measures : a 

coordinated training offer was set up since 2003, 

based on the levels of competencies defined by 

SwissEduc, the education committee of palliative ch 

(Swiss Society for Palliative Care). This offers consists 

of 

a) sensibilisation (basic) training (4 days), for 

individuals or institutions: elderly homes (EMS), 

institutions for mentally disabled persons (ESE), 

b) a regional training program for volunteers (8 days), 

c) an interdisciplinary modular training (16 days for 

physicians, nurses and pharmacists - 10 days for other 

professions), 

d) continuous training days for volunteers and ESE, 

e) intramural workshops within EMS, home care 

services (CMS) and ESEA coordination platform of PC 

trainings gathers education institutions and main 

healthcare partners. 

The different training programs, progressively set up 

since 2003, are mostly financed by the CP. 

Results: 

a) sensibilisation : 52 EMS (35%) have 1040 trained 

collaborators (TC), 8 ESE (57%) have 240 TC, 

b) 97 trained volunteers, 

c) more than 250 ressource persons trained (100% in 

CMS, 80% in EMS, 43% in ESE), 

d) 320 volunteers, 360 ESE’s collaborators, 

e) more than 500 TC pro year. 

Future projects: 

1. Specialisation training for professionals working 

within PC care settings (24 days), 

2. Sensibilisation (basic) training for CMS, 

3. Sensibilisation (basic) training for hospitals. 



Creating Confidence in Care: Impact of a Six 

Day Palliative Care Education Course for 

Hospital Nurses 

Marley K.A. 1 , Baldry C. 1 , Groves K.E. 1 

1 Queenscourt Hospice, Southport, United Kingdom 

Background: The Cancer Plan 2000 included the 

importance of keeping patients at home where that 

was their choice and educating district nurses to have 

the confidence & skills to look after them. However, 

no matter how much care is available at home, some 

patients in the last weeks and months of life will be 

admitted to hospital. This may be at the time of 

diagnosis or because of some other acute problem and 

some will die there. During this time hospital nurses 

provide the vast majority of the care they receive. To 

enable them to provide general palliative care to such 

patients they need to feel confident in their skills and 

recognise where they need to call on specialist help. 

Aims: To provide high quality palliative care 

education to hospital nurses to increase their 

knowledge, skills and confidence in dealing with 

patients with palliative care needs. 

Method: A six day palliative care course for hospital 

nurses including assessment, symptom management, 

communication skills and advance care planning. 

Participants completed pre- and postcourse 

questionnaires regarding knowledge and confidence 

in dealing with patients at the end of life. 

Results: Over 80 hospital nurses have taken part in 

the course since 2008. Confidence levels in dealing 

with patients at the end of life were higher after the 

course. Nurses felt more comfortable talking about 

death and dying and also talking to families. The 

knowledge based questions completed at the end of 

the course demonstrated consistently higher scores 

compared with the initial questionnaires. 

Discussion: These results show that courses in 

Palliative Care can increase the confidence and 

knowledge of nurses. Patients will benefit in future 

from improved communication, recognition of 

symptom control needs and active participation in 

advance care planning by hospital nurses. 



Movies and Palliative Care. A New Friendship? 

Redondo Moralo M.J. 1 , Diaz Diez F. 1 , Bonino 

Timmermann F. 1 

1 Servicio Extremeño de Salud. Support Palliative Care 

Team, Badajoz, Spain 

Objectives: Describe the experience using cinema in 

teaching palliative care tools. 

Study design and method: It is a descriptive study. 

We conducted three workshops for 65 professionals 

from Primary Care and Hospital Care about Palliative 

Care tools such as communication skills, pact of 

silence, bereavement and agony. Movies were used to 

get into the field and to work on different topics using 

as a working methodology cinema forum. It consists 

in comment films in response to small details in order 

to learn teaching objectives. 

Referring to collect the experience about learning 

through films, we used a questionnaire based on six 

main questions evaluated with Liker scale asking 

about the usefulness of the cinema in PC (Palliative 

Care), if you would change the attitude towards 

movies as teaching tool and if methodology is 

effective to acquire the skills and the utility in their 

daily practice. 

A Likert item is simply a statement which the 

respondent is asked to evaluate according to any kind 

of subjective or objective criteria; generally the level of 

agreement or disagreement is measured. Often five 

ordered response levels are used: Strongly disagree (1), 

Disagree (2), Neither agree nor disagree (3), Agree (4). 

Strongly agree (5). 

Results: Regarding the usefulness of the cinema in 

PC, 91.3% learners were strongly agree. 60.9% of 

them had five-point score about the utility in their 

daily practice against 26% were neither agree nor 

disagree. In other way, the majority of learners were 

agree or strongly agree about the methodology was 

effective to acquire the skills and finally, almost 80% 

of them would change the attitude towards films as 

teaching tool. 

Conclusions: Cinema could be an excellent teaching 

tool in order to acquire knowledge in Palliative Care. 



Nurses vs Opioid Prejudices in Cancer Pain 

Treatment 

Negulescu L. 1 , Donea O. 1 , Lazar A. 1 , Lazar F. 2 

1 Association for Mobile Palliative Care Services, 

Bucharest, Romania, 2 University of Bucharest, Faculty 

of Sociology and Social Work, Bucharest, Romania 



It is well acknowledged that nurses are important 

members of the medical team and have the closest 

relationship with the patient. In Romania, nurses lack 

specific training in dealing with oncological patients 

and their specific needs. An educational program for 

nurses working in oncology, radiotherapy and 

hematology departments was developed in Bucharest, 

between February-May 2010, as a partnership of a 

non-governmental organization with a 

pharmaceutical company. 

The training focused on supportive care for patients 

receiving anti-cancer treatments. The course was 

attended by a number of 59 nurses and consisted in 2 

interactive modules (32 hours of training).The 

training focused on topics such as communication 

with cancer patient, symptom control (pain, anxiety 

and depression, dyspnea, constipation and diarrhea, 

nausea and vomiting, the terminal cancer patient, 

delirium, parenteral hydration), nursing (pressure 

sores, fungating lesions, stoma care, skin toxicities, 

mucositis).Using a pretest and a posttest, we measured 

the difference in the answers that quantifies the 

change in the level of knowledge acquired during the 

course. 

Regarding the opioid treatment for cancer pain, at the 

beginning of the course 62,7 % believed that there is 

an upper limit in morphine dosage, 42% answered 

that the most frequent side effect is respiratory 

depression and 57% considered that the patients 

treated with morphine for pain get addicted.After the 

course 96,6% answered that morphine has no 

maximum dosage if used for cancer pain treatment, 

88,1% the most frequent side effect is constipation 

and 96,6% considered that correct pain treatment 

using morphine doesn’t lead to addiction. 

This program is an argument for specific training of 

nurses in the care of a specific population of patients. 

In the case of cancer patients, education for nurses 

should mandatory include breaking down the 

prejudices regarding the opioid treatment for cancer 




Informative and Training Program for 

Hospitals with No Specialist Palliative Care 

Teams 

Garcia-Baquero Merino M.T. 1 , Perez Cayuela P. 2 , Martínez 

Cruz M.B. 3 , Salas T. 3 , Vidaurreta R. 3 , De Andrés Colsa R. 4 

1 Coordinación Regional de Cuidados Paliativos, 

Consejeria de Sanidad de la Comunidad de Madrid, 

Madrid, Spain, 2 Area de Formación. Agencia Laín 

Entralgo, Consejería de Sanidad de la Comunidad de 

Madrid, Madrid, Spain, 3 Coordinación Regional de 

Cuidados Paliativos, Consejería de Sanidad de la 

Comunidad de Madrid, Madrid, Spain, 4 Subdirección 

de Gestión y Seguimiento de Objetivos. Dirección 

General de Hospitales, Consejería de Sanidad de la 

Comunidad de Madrid, Madrid, Spain 

Background: Palliative care is a human right and 

must be widely accessible. In care settings with no 

specialist teams, education and training can improve 

patient´s quality of care. Our region has seen a large 

increase in the number of hospitals within the last 

three years. The number of trained professionals has 

not increased. 

Aim: Dliver participative theoretical and practical 4 

hours training sessions to each of 11 hospitals aimed 

at doctors, nurses, pharmacists, psychologists and 

social workers to promote professional sensibility and 

improve knowledge in identifying, caring and 

treating patients with advanced illnesses in order to 

enhance patients´ and their families´ quality of life. 

Methodology: Six weeks prior to the first session all 

hospital chief executive officers were sent a letter 

explaining the program and asking them to 

encourage staff attendance and to choose a morning 

or afternoon session from a list within their preferred 

week of the 12 weeks allocated. All eleven CEOs 

replied and chose a representative for their hospital to 

act as a liaison. 

Results: Eleven sessions were organized and 

delivered with a total attendance of more than 500 

professionals. All planned hospitals were visited 

resulting in more than 40 palliative care teams being 

involved. Altogether close to 1000 professionals were 

involved in the program. Representatives from all 

local Palliative Care Teams were also invited and 

attended. 

During each of the 4 hours sessions the topics 

addressed were: 

Basic concepts. 

Regional Strategy for Palliative Care 

Referral criteria. Available PC teams, units, etc. Team 

97 


(Thursday)


(Thursday) 


working. 

Needs centered Palliative care: 

Level of complexity. 

Level of intervention. 

Regional and local PC coordination. 

· Specific needs for each hospital within its region. 

Two documents were drawn: The first incorporating 

all ideas, concerns and proposals from the centres´ 

attendees. The second incorporating the training 

team´s observations. 



What Are Doing Some Undeveloped Countries 

for Education in Palliative Care: The Case of 

Venezuela, Panama and Mexico 

Holguin-Licón M. 1 , Bonilla P. 2 , Buitrago R. 3 

1 Cepamex, Mexico, Mexico, 2 Hospital Nacional de 

Cáncer, Caracas, Venezuela, 3 Universidad de Panamá, 

Farmacia Clínica, Panamá, Panama 

One of the fundamental pillars for the proper 

development of palliative care is the education of a 

multidisciplinary team involved in the provision of 

comprehensive services (medical, pharmacists, 

nurses, psychologists, social workers, therapists, 

volunteers, counselors and spiritual support). 

Therefore, greatest number of hours devoted to 

education should be invested in training those 

professionals to ensure rapid growth of palliative care 

provision in undeveloped countries. 

The aim of this study was to determine the existing 

training and the diversity of courses available for 

palliative care in each subject’s country via a survey to 

get an accurate situation of education in Palliative 

Care. 

The study showed the training courses for the 

multidisciplinary team based on Palliative Care 

worldwide teaching standards and their expected 

impact in the health providing services. 



A Survey to Assess the Nature and Delivery of 

End of Life Training for Oncology Trainees in 

the West Midlands, UK 

Benson D. 1 , Wright B. 2 

1 Marie Curie Hospice, Solihull, United Kingdom, 2 St 

Richards Hospice, Worcester, United Kingdom 

Introduction: In the UK, improving education for 

all those involved in delivering end of life care has 

become a priority. Oncology specialists play a crucial 

role in providing end of life care for patients with 

advanced cancer. In 2003, a European survey 

suggested that Oncologists felt inadequately trained 

to manage certain aspects of end of life care, 

specifically those involving existential and 

psychological care. 

This pilot survey assesses the experiences of Oncology 

trainees in end of life care and the involvement of 

Palliative Care specialists in the provision of this 

training. 

Methods: Following a review of the literature, a 

questionnaire was developed and distributed to a 

convenience sample of 18 Oncology trainees working 

in the West Midlands, UK. 

Results: All respondents (n=18) received some 

training in end of life care. Palliative Care specialists 

delivered the majority of formal teaching but this was 

infrequent (annually or less for 73% of respondents). 

Most respondents received teaching in the 

management of pain (89%) and other physical 

symptoms (78%). Fewer respondents received 

training in the management of psychological (44%) 

and existential distress (17%). Teaching was usually 

delivered in a hospital setting (89%), rather than in a 

hospice (39%) or the community (6%). Only 28% of 

respondents felt they had received sufficient training 

to meet curriculum competencies in end of life care. 

Conclusions: This pilot survey suggests Oncology 

trainees in the West Midlands receive some formal 

education in end of life care but that this focuses on 

the physical, rather than the psychological and 

existential aspects of palliative care. Few trainees 

receive training in hospice and community settings, 

where the potential to gain experience in the nonphysical 

aspects of palliative care may be greater. 

A national survey to establish the educational needs 

of oncology trainees may help to better inform those 

involved in end of life care teaching in the future. 



Énd of Life Enhancement´ - A Novel 

Introduction of First Year Medical Students to 

the Concept of Quality of Life and Palliative 

Medicine 

Murtagh C. 1 , Mannion E. 1 , Flaherty G. 2 , Waldron D. 1 

1 Galway University Hospital, Galway, Ireland, 

2 National University of Ireland, Galway, Ireland 

While palliative medicine has been acknowledged as 

an important component of undergraduate medical 

training, there remains a paucity of formal education. 

To address this , we have designed and integrated a 

very successful elective Special Study Module (SSM) 

into the undergraduate medical curriculum at the 

National University of Ireland, Galway. This module 

has been developed for first year medical students and 

has been delivered for the last two years by three 

specialist palliative care physicians. The SSM has a 

number of specific objectives aimed at students 

gaining an understanding of the fundamental 

principles of palliative care, the concept of quality of 

life and the role of the palliative care team. These 

objectives are achieved over a ten week period when 

students spend 4 hours per week with the palliative 

care team. Given the limited medical knowledge of 

first year students, focus is placed on a psychosocial 

health model. Central to the module is the sequential 

measurement of patients´ quality of life by students, 

as measured by the ´Schedule for the Evaluation of 

Individual Quality of Life´, a reliable and valid 

measure of quality of life used extensively among 

palliative care patients. The module is underpinned 

by didactic teaching of the theory and principles of 

palliative care. The assessment process for the module 

involves continuous assessment, submission of a 

written assignment, and a powerpoint presentation 

summarizing their experience of the module and their 

perception of the role of the palliative care team. The 

module is the most popular among 13 SSM choices. 

An electronic questionnaire sent to students, showed 

that all students enjoyed the module, 86% would 

recommend it and all students believe it will help 

them in their future career. As doctors, we found the 

enthusiasm of working with students who select the 

specialty very fulfilling and highly recommend that 

other departments of palliative medicine embark on 

delivering such a module. 



A Combined Medical, Psychosocial and 

Nursing Program Supporting Oncological 

Patients 

Hershko H. 1 , Burko Y. 2 

1 Maccabi Health Services, Oncology District, 

Maccabim, Israel, 2 Maccabi Health Services, Social 

District Department, Rishon Lezion, Israel 

Maccabi Health Services has about 47000 oncology 

patients. Each year about 5,000 new members are 

diagnosed. The Oncological patient and his family 

need a multidisciplinary team which will accompany 

and support them in all stages of the disease from 

diagnosis to the end of life. It is our challenge to 

develop community services which will meet the 

needs of patients and their families, keep continuity 

of care and empower the teams of therapists. 

Objectives: Assuring quality for nursing and 

psychosocial care throughout all stages of the disease 

Providing treatment by a multi-professional team 

including and oncologist, nurse, social worker and a 

dietitian. Offering a variety of treatments including 

counseling, guidance, providing relevant information 

and coordinating the treatments .Empowering staff 

members by providing guidance and developing 

professional skills. 

Target audience: Oncological patients and their 

families. Multi-professional teams. 

Method: Establishing an Oncological unit at the 

different districts consisting of: a nurse and a social 

worker that will provide individual care for the 

patient and his family.Operating 4 oncological clinics 

at each district by a multi professional team. 

Operating support groups . Operating Body-Mind 

support groups . Establishing an Oncological forum 

for nurses and social workers to continue training. 

Results: 

• 60 support groups have been operating in which 

participated about 750 patients and their families. 

• 10 Empowerment teams and Body and Mind groups 

are operating in which 120 patients are taking part. 

• Oncology teams are now treating about 30% of new 

diagnosed patients compared to about 5% treated 

before initiating the program. 

Conclusions: Oncology patient care by a 

multidisciplinary team from the stage of diagnosis 

increases the patients satisfaction with the health care 

system, but most importantly improves patient´s and 

family´s ability to cope with the disease and its 

implications. 



Palliative Care and Learning Disability: A 

Practice Development Role 

Heals D. 1 

1 Dorothy House Hospice Care, Bradford on Avon, 


It is well recognised, that people with a learning 

disability have poorer health than the general 

population, increased co-morbidities with a decreased 

life expectancy and unmet health and social care 

needs. Increasingly more people with learning 

disabilities need palliative care and many people rely 

on residential carers and support staff to support them 

when they are faced with a terminal illness. Staff are 

often unprepared, anxious, lacking experience and 

confidence in their ability to do so. 

The implementation of a practice development role 

demonstrates how a variety of educational 

approaches can be used to increase the knowledge 

and confidence of these staff through exploring the 

assessment, planning and delivery of palliative care 

within the learning disability environment. Teams are 

encouraged to identify key issues through reflection 

on actual case examples and the use of diagnostic 

tools to highlight areas for service improvement. Ideas 

and strategies for service development are then 

considered and discussed with the teams and 

managers. 

The approach used may take the form of facilitating 

regular monthly sessions within the practice 

environment over a period of 6-12 months with the 

manager and a core group of staff; working directly 

with a group of managers from provider services over 

several months or working with the manager and a 

whole staff team using person-centred thinking tools. 

Cultural and organisational changes have been 

demonstrated as a result of the role with 

conversations about death and dying being more 

open between staff and individuals with a learning 

disability, individuals completing plans for their 

wishes at the end of life, bereavement policies and 

procedures are in place, and the introduction of 

psychosocial and emotional support care plans linked 

to end of life conversations. 

Managerial support is essential in supporting practice 

development and collaborative working is key in 

successful implementation of theory into practice. 



Existential Issues in Pain & Palliative Care: A 

Monthly Lecture Series to Educate and 

Support New Palliative Care Physicians in 

End-of-Life Care 

Poppito S.R. 1 

1 City of Hope National Medical Center, Department 

of Supportive Care Medicine, Duarte, CA, United 

States 

Purpose: This ‘Existential Issues in Pain & Palliative 

Care’ lecture series was developed specifically for Pain 

& Palliative Care clinical fellows at a nationally 

known American comprehensive cancer center. The 

two main goals of this course are: 

1.) to educate fellows regarding core existential 

themes that arise in terminally-ill patients struggling 

with pain and palliative care issues, and 

2.) to support fellows in caring for dying patients and 

their families in need. 

Method: A clinical psychologist, well-trained in 

existential and palliative care issues, developed this 10 

session curriculum to educate and support clinical 

fellows facing daily human suffering. The lectures 

focus on core existential-spiritual issues that arise in 

terminally-ill patients struggling with end-of-life 

concerns. Fellows attended 10 monthly sessions 

covering five ‘core existential EoL care issues’ (e.g., 

existential pain & suffering, angst, guilt, isolation, 

despair), and five ‘existential themes in clinical practice’ 

focused on meaning-making and legacy-building in 

EoL care. 

Findings: Approximately 30 Pain & Palliative Care 


clinical fellows participated in this monthly lecture 

series over a 3 year period . Fellows gained the 

theoretical knowledge and clinical insight necessary 

to identify existential pain and suffering, as well as 

support patients and families through the death and 

dying process. Fellows responded positively to this 

course, as evidenced by affirmative feedback and 

increased patient cross-referrals for end-of-life 

counseling and support. 

Conclusions: As the field of palliative care continues 

to grow and expand, it is imperative to develop core 

curriculum for new clinicians to be well-versed in the 

multi-dimensional nature of pain and suffering in EoL 

care. Educating new practitioners in the existentialspiritual 

needs of dying patients allows them to be 

well-informed and better equipped to meet the 

psycho-social needs of patients and families at the end 

of life. 



Development of a Basic Drug Kit for the Final 

Days of Life - Which Drugs Should Be 

Available Regardless of where the Patient Is 

Cared for? 

Lindqvist O. 1,2,3 , Allan S.G. 4,5 , Bükki J. 6 , Daud M.L. 7 , 

Dickman A. 8 , Lundh Hagelin C. 1,9,10 , Lundquist G. 11,12 , 

Rasmussen B.H. 3 , Sauter S. 1 , Tishelman C. 1,2 , van Zuylen 

L. 13 , Fürst C.J. 1,9 , on behalf of OPCARE9 

1 Stockholms Sjukhem Foundation, Research & 

Development Unit in Palliative Care, Stockholm, 


Learning, Informatics, Management and Ethics, 

Stockholm, Sweden, 3 Umeå University, Department 

of Nursing, Umeå, Sweden, 4 Arohanui Hospice, 

Director of Palliative Care Services, Palmerston North, 

New Zealand, 5 MidCentral Health, Oncology, 

Regional Cancer Treatment Services, Palmerston 

North, New Zealand, 6 University of Erlangen, 

Department of Palliative Medicine, Erlangen, 

Germany, 7 Pallium Latinoamérica Asociación Civil 

(NGO), Buenos Aires, Argentina, 8 Marie Curie 

Palliative Care Institute Liverpool, University of 

Liverpool, Liverpool, United Kingdom, 9 Karolinska 

Institutet, Department of Oncology-Pathology, 

Stockholm, Sweden, 10 Sophiahemmet University 

College, Stockholm, Sweden, 11 Umeå University, 

Department of Radiation Sciences - Oncology, Umeå, 

Sweden, 12 Palliative Team Västerbergslagen, County 

Council of Dalarna, Ludvika, Sweden, 13 Erasmus MC, 

Department of Medical Oncology, Rotterdam, 

Netherlands 

OPCARE9 is an EU 7 th framework project aiming to 

optimize cancer care in the last days of life by 

systematizing existing knowledge and identifying 

knowledge gaps. The 9 participating countries include 

7 in Europe, Argentina, and New Zealand. The 

Swedish group coordinates the international 

collaborative work package focusing on 

pharmacological and non-pharmacological 

alleviation of suffering in the last days of life. The aim 

of the present study was to reach consensus regarding 

recommendations about a basic drug kit for the last 

days of life for patients with cancer, intended for use 

in non-specialist settings. 

A Delphi method was used, in which a group of 

experts are asked in multiple rounds to achieve 

consensus. In the present study 135 palliative care 

clinicians in the OPCARE9 countries were invited to 

participate. 

In the 1 st Delphi Round (DR), physicians were asked 

about 1 st and 2 nd choice of generic drugs to alleviate 

anxiety, dyspnoea/breathlessness, nausea and 

vomiting, pain, respiratory tract secretions, as well as 

terminal restlessness and agitation in the last days of 

life. It was possible to suggest pharmacological 

treatment for additional symptoms. This web survey 

was answered by 97 physicians. Based on the 

responses, the 2nd DR was performed with the same 

physicians. They were asked to choose ≤ 5 essential 

drugs for symptom alleviation in the last 48 hours of 

life, which should be available even outside specialist 

palliative care settings. There was a high degree of 

consensus (>80%) among the 95 respondents 

regarding morphine, haloperidol and midazolam as 

essential drugs. There was less consensus about drugs 

for respiratory tract secretions, with between 8-29% of 

the physicians choosing 4 different generic drugs. 

Based on these DRs, we make some basic suggestions 

about an essential drug kit for the last 48 hours of life 

for broad use for non-specialised palliative care, which 

will be further elaborated and discussed at the 

conference. 



The Practice of Continuous Deep Sedation 

until Death in Belgium, the Netherlands and 

the United Kingdom: A Descriptive Study 

Anquinet L. 1 , Rietjens J.A. 1 , Seale C. 2 , Seymour J. 3 , Deliens 

L. 1,4 , van der Heide A. 5 

1 Ghent University & Vrije Universiteit Brussel, Endof-life 

Care Research Group, Jette, Belgium, 2 Queen 

Mary, University of London, Centre for Health 

Sciences, Barts and the London School of Medicine 

and Dentistry, London, United Kingdom, 3 University 

of Nottingham, School of Nursing, Nottingham, 

United Kingdom, 4 EMGO Institute for Health and 

Care Research, Department of Public and 


5 Erasmus MC, University Medical Center, 

Department of Public Health, Rotterdam, Netherlands 

Research aims: The incidence of continuous deep 

sedation until death (CDS) differs between countries: 

CDS precedes 14.5% of all deaths in Belgium (BE), 

8.1% in the Netherlands (NL) and 16.5% in the UK. 

This study compares characteristics of CDS in these 

countries in order to formulate hypotheses explaining 

these differences. 

Study design and methods: In BE and NL, a death 

certificate study was conducted in 2007 resp. 2005. 

Questionnaires about CDS and other decisions were 

sent to the certifying physicians of each death from a 

stratified sample (BE: n=6927; NL: n=6860). In UK in 

2008, questionnaires were sent to 8857 randomly 

sampled physicians asking them about the last death 

attended. 

Results: The response rate was 58% for BE, 78% for 

NL and 42% for UK. The total number of deaths 

studied was 11731 of which 1517 involved CDS. In BE 

and NL, CDS was significantly less often performed by 

general practitioners than by medical specialists. 

Patients older than 80 years received less CDS than 

patients younger than 65 years; this was statistically 

significant in BE and UK hospital deaths and NL 

home deaths. In NL, CDS was less often performed for 

cancer patients at home compared to BE and UK; and 

less often performed for patients with cardiovascular 

diseases in hospitals compared to BE and at home 

compared to UK. Sedation was less often performed 

with opioids alone in Dutch hospitals compared to BE 

and UK, and in the home setting in NL and UK, 

compared to BE. CDS had more often a duration of < 

24 hours in hospitals and at home in NL compared to 

BE and UK; this reached statistical significance only 

for NL vrs BE. 

Conclusion: Differences in the incidence of CDS in 

the three studied countries seem to be related to 

differences in its use in hospitals and the home 

setting, differences in its use for specific diagnoses, 

and an inclination in NL to perform CDS less often 

with opioids alone and more often for patients with a 

life expectancy of less than one day. 



Treating the Patient or the Disease: Hidden 

Factors Influencing Decision Making 

Griffiths D.L. 1 

1 Monash University, Nursing & Midwifery, 

Frankston, Australia 

This paper examines the important determinants that 

serve to influence the practices of nurses and medical 

practitioners when they deal with seriously ill patients 

who wish to reject invasive, ongoing treatment. The 

determinants characterise the many varied 

behaviours employed by nurses and medical 

practitioners, which both enhance and restrict their 

conduct. 

Aim: The paper identifies the key factors which serve 

to shape nurses’ and medical practitioners’ 

interactions with each other, with their patients and 

with relatives when patients decide to reject ongoing 

active treatment. 

Design: The paper emerges from a grounded theory 

study involving both junior and senior nurses and 

medical practitioners from two public hospitals in 

Australia. 

Results: Three key determinants are conceptualized 

as affecting the activities of the nurses and medical 

practitioners when dealing with patients. 1. The 

Context of Work reflects the design and manner in 

which work, including communication, occurs and 

comprises the locality, accessibility and stability of the 

workforce. 2. Beliefs and Behaviours addresses the 

ideas and values which underlie and drive the 



individual conduct of health professionals, and 

includes their perceptions of, and reactions to the 

conduct of patients and relatives. 3. Legal and Ethical 

Frameworks considers the legal principles, policies 

and ethical codes that establish expected clinical 

standards and guide practice. 

Conclusion: The determinants establish the 

overriding framework in which interactions of health 

professionals occur as they manage patient and family 

decisions to refuse therapy. If nurses and medical 

practitioners desire an expeditious and successful 

outcome for their patients, namely the right to reject 

invasive and aggressive treatment, nurses and medical 

practitioners need to be cognisant of the factors that 

affect and underpin their conduct. 

Funding: This research was undertaken as an 

unfunded PhD project. 



Culture and End-of-Life Care: A Scoping 

Exercise in Eight European Countries 

Gysels M. 1 , Evans N. 1 , Meñaca A. 1 , Andrew E. 1 , Toscani 

F. 2 , Higginson I.J. 3 , Harding R. 3 , Pool R. 1 

1 University of Barcelona, Barcelona, Spain, 2 IIstituto 

di Ricerca in Medicina Palliativa “Lino Maestroni, 

Milan, Italy, 3 King’s College London, London, United 


Aim: Cultural issues are often not addressed 

adequately in end of life (EoL) care. We explore 

cultural differences in understanding and prioritising 

EoL care and how this is reflected in research in 

different European countries. 

Methods: We scoped the literature for the European 

countries participating in the PRISMA project (UK, 

Germany, Norway, Belgium, the Netherlands, Spain, 

Italy and Portugal), carrying out electronic searches in 

13 international and country-specific databases and 

hand searches in 14 journals, bibliographies of 

relevant papers and web pages). We analysed the 

literature in its entirety and by type (reviews, original 

studies, opinion pieces) and conducted quantitative 

analyses for each country and across countries. This 

generated themes and sub-themes. 

Results: We identified 560 original studies, 290 other 

sources, and 18 reviews. The following themes 

facilitated cross-country comparison: setting, 

caregivers, communication, medical EoL decisions, 

minority ethnic groups, and knowledge, attitudes and 

values of care and death. The frequencies with which 

themes occurred varied considerably between 

countries. Sub-themes reflected issues characteristic 

for specific countries (e.g. culture-specific disclosure in 

Mediterranean countries). In contrast to other 

European countries, there is a vast literature on EoL 

care in the UK and the evidence addressing culture in 

EoL care is focused on ethnic minorities. The work 

from other European countries concentrates on 

national cultural traditions and practices in EoL care, 

and there was almost no evidence on ethnic 

minorities. 

Conclusion: This scoping review sheds light on the 

evolution of EoL care across different countries and 

the cultural norms that influence EoL care. This in 

turn informs the concept of culture and how it can be 

operationalised. The scoping exercise contributes to 

the debate about the nature and quality of evidence in 

EoL care research. 

Funding source: EU FP7 



Pragmatic Aspects of Dignity Therapy 

Implementation in a Community-based 

Hospice Setting 

Montross L.P. 1 , Winters K. 2 , Irwin S.A. 1 


Hospice, Psychiatry, San Diego, CA, United States, 

2 University of California - San Diego, San Diego, CA, 

United States 

Background: Dignity Therapy is a brief, empiricallysupported, 

individualized psychotherapy designed for 

patients at the end of life. This psychotherapy allows 

patients to create a formalized legacy transcript, and 

has been shown to heighten a sense of meaning while 

decreasing suffering and depressive symptoms in 

research samples. To date, this psychotherapy has not 

been implemented in a “real-world” communitybased 

hospice setting. This study was designed to offer 

information about the pragmatic aspects of 

implementing Dignity Therapy for patients receiving 

99 


(Thursday)


(Thursday) 


hospice care. 

Method: 27 patients completed Dignity Therapy as 

part of a clinical service newly offered at a 

community-based hospice. Referral and enrollment 

procedures as well as the logistics of therapy 

implementation were monitored. Patients’ legacy 

transcripts were also qualitatively analyzed to 

measure emergent themes. 

Results: Patients were most commonly referred by 

social workers, and on average produced Dignity 

Therapy legacy transcripts approximately 3000 

words/ 8 pages in length. The mean number of 

sessions spent with patients was four, equating to an 

average of 380 minutes of clinician time per patient. 

Qualitative analyses revealed the most commonly 

discussed topics among patients were (in rank order): 

autobiographical information, love, lessons learned in 

life, defining roles, accomplishments, character traits, 

unfinished business, hopes and dreams, catalysts, 

overcoming challenges, and guidance for others. 

Discussion: This was the first study to implement 

Dignity Therapy in a community sample, with results 

highlighting the practical aspects of treatment as well 

as the most common themes discussed by clinical 

patients at the end of life. These findings provide 

useful data for other clinicians or organizational 

leaders who are contemplating the logistics involved 

when bringing Dignity Therapy into their setting, and 

highlight what issues are on the minds of people near 

the end of life. 



Exploring the ‘Invisible’ Process of Dying 

Hockley J.M. 1 

1 St Christopher’s Hospice, Care Home Project Team, 


Background: Death and dying is a core part of 

palliative care and hospice work. However, with the 

increasing interest in symptom control and use of 

terminal sedation in cancer, understanding the 

human element of the process of dying is in danger of 

being lost. We can learn much from the naturalness of 

dying seen in frail older people dying in care homes 

where for many older people life has come to a natural 

end and death can almost be seen as a celebration of a 

life long-lived. When permitted, older people can be 

very open about death and dying and often surprise 

staff by accurately predicting their departure. As a 

result of a less medicalised model of care in care 

homes, older people can often be more engaged in the 

awareness of dying. 

Aim: This presentation will explore dying ‘from 

within’ rather than it being just a physical process. 

Methods: Narratives collected over the last 10 years 

while working with nursing home staff to develop 

quality end of life care will be used to explore the 

significance of the subjective process of dying. A 

structure by Hampe - a Lutheran theologian - will 

frame the narratives into 3 core themes: ‘exiting the 

body’, the ‘panorama of life’ and a ‘heightened 

consciousness’. 

Conclusion: As a result of the narratives dying is 

seen as an ‘active’ process rather than a passive one 

with older people. It illustrates that, just as animals 

know they are dying and take themselves off to the 

forest, so an instinct exists in human beings if those 

working with the dying are alert to it. By hearing these 

narratives many will realise that there is not only a 

physical or ‘visible’ process to dying but one that is 

more invisible. 



Awareness of Dying; It Needs Words 

Lokker M.E. 1,2 , van Zuylen L. 2 , Veerbeek L. 3 , van der Rijt 

C.C.D. 2 , van der Heide A. 1 

1 Erasmus Medical Centre, Department of Public 

Health, Rotterdam, Netherlands, 2 Erasmus Medical 

Centre, Department of Internal Oncology, Rotterdam, 

Netherlands, 3 Comprehensive Cancer Centre West, 

Leiden, Netherlands 

Introduction: The Liverpool Care Pathway for the 

Dying Patient (LCP), a template for care in the dying 

phase, has proven to enhance quality of care for the 

dying patient. Open awareness of the onset of the 

dying phase among physicians, nurses, and patients 

and their family caregivers is an important element of 

the LCP. We studied to what extent dying patients are 

aware of the imminence of death, whether such 

awareness is associated with acceptance of dying, and 

if views of physicians, nurses and caregivers on 

patients’ awareness of dying agreed. 

Methods: Physicians, nurses and family caregivers of 

475 deceased patients from three different care 

settings in the southwest-Netherlands completed 

questionnaires. The three groups were asked whether 

a patient had been aware of the imminence of death. 

Associations between the presence of such awareness 

and patient characteristics, symptoms and acceptance 

of dying were assessed using chi-square test. Interrater 

agreement (Cohen’s Kappa) on patients’ 

awareness of dying between the three response groups 

was assessed. 

Results: Physicians and nurses completed 

questionnaires about 472 patients, family caregivers 

about 280 patients (response 59%). According to 

physicians 48% of patients had been aware of the 

imminence of death, according to nurses 58% and 

according to family caregivers 62%. Inter-rater 

agreement on patients’ awareness of dying was fair 

(K= 0,276-0,325). Patients who, according to their 

family caregiver, were aware of the imminence of 

death were significantly more often in peace with 

dying and felt more often that life had been worth 

living. 

Conclusion: Being aware of dying is associated with 

acceptance of dying. Agreement between health care 

professionals and caregivers concerning patient’s 

awareness of dying is not optimal. Communication 

about the situation of a patient in the dying phase is 

an important focus of the LCP and appears to be open 

for improvement. 



Documented Advance Care Planning among 

Nursing Home Residents with Dementia in 

Belgium: Prevalence and Associated Outcomes 

Vandervoort A. 1 , Van den Block L. 1 , Van der Stichele R. 2 , 

Van der Steen J.T. 3 , Deliens L. 1,3 , End-of-Life Care Research 

Group - Ghent University & Vrije Universiteit Brussel 

1 Vrije Universiteit Brussel, Brussel, Belgium, 2 Ghent 

University, Ghent, Belgium, 3 VU University Medical 


Amsterdam, Netherlands 

Aim: Advance care planning is an important element 

of high-quality care in nursing homes, especially for 

residents suffering from dementia who are often 

incompetent for decision making at the end of life. 

The aim of this study is to describe the prevalence of 

documented advance care planning among nursing 

home residents with dementia in Flanders, Belgium 

and study associated clinical characteristics and 

outcomes. 

Method: All 594 nursing homes in Flanders were 

asked to participate in a retrospective quantitative 

study in 2006. Participating homes identified all 

residents who had died over the last two months. A 

structured questionnaire was mailed to the nurses 

closely involved in the deceased resident’s care 

regarding diagnosis of dementia and documented 

care planning i.e. advance patient directives, 

appointment of proxy decision-makers and general 

practitioner’s orders limiting treatment (GP orders). 

Results: In 345 nursing homes (58%) nurses 

identified 764 deceased residents with dementia of 

which 63% had some type of documented care plan 

i.e. advance patient directives in 3%, an appointed 

proxy decision-maker in 8% and GP orders in 59%. 

Multivariate logistic regression showed that GP orders 

were associated with receiving palliative care in the 

nursing home (OR 3.0; CI, 2.00 - 4.4). The odds of 

dying in a hospital were lower if there was a GP order 

(OR 0.53; CI, 0.31 - 0.93). 

Conclusions: While GP orders are relatively 

common among residents with dementia in Belgium, 

advance patient directives and the appointment of a 

proxy decision-maker are rather uncommon. GP 

orders appear very relevant in affecting place of death. 

Funding: VUB 



Use of Intravenous Chemotherapy and 

Radiotherapy in the Last Days of Life of 

Cancer Patients. A Population Based Study in 

Austria 

Kierner K.A. 1 , Wiesmayr M. 1 , Masel E. 1 , Watzke H. 1 

1 Medical University of Vienna, Vienna, Austria 

Background: Use of intravenous chemotherapy and 

radiotherapy at the end of life is generally regarded as 

aggressive treatment and might be indicated only 

under certain circumstances. Data exist on its use in a 

period of many weeks and months prior to death but 

little date exist on the last days of life when any 

aggressive therapy should absolutely be avoided. 

Methods: We searched a national database to 

identify all cancer patients who died during 2004- 

2008 in a hospital in Austria and had received 

intravenous chemotherapy and/or radiotherapy 

during the hospital stay they have died in. Time 

interval between day of last chemotherapy or last 

radiotherapy and day of death was calculated 

Results: The last therapy was administered in these 

patients at a median of 8 days (Q1: 3,0; Q3: 17) prior 

to death. The median for chemotherapy was 10 days, 

for radiotherapy 6 days. Taken together they showed a 

constant decrease from 9 days (2004) to 8 days (2005- 

7) and 7 days (2008). Men received either one at a 

median of 7 days prior to death while women had an 

median interval of 12 days. Men and women had a 

decrease in their interval from 2004 to 2008: men 

from 8 days to 6 days and women from 12 to 9 days. 

Chemotherapy was given to 8% of all patients in our 

sample in their last 2 days, to 11% in their last 3 days, 

to 13% in their last 4 days and to 15% in their last 5 

days. This accounts for an estimated 0.6, 0.8, 1.0 and 

1.2 % of all cancer patients in Austria. 

Conclusion: Our data show that the interval 

between aggressive therapy and end of life has been 

constantly decreasing between 2004 and 2008. 

Chemotherapy is given to roughly 0.6 % of all cancer 

patients in their last two days of life. 



Typical Crises and Needs in Patients with 

Advanced Chronic Obstructive Pulmonary 

Disease (COPD) or Lung Cancer in their Last 

Year of Life - A Literature Scoping Exercise 

Ramsenthaler C. 1,2 , Scheve C. 1,3 , Bausewein C. 1,2 , Simon 

S. 1,2,4 

1 Institute of Palliative Care, Oldenburg/Germany 

(ipac), Oldenburg, Germany, 2 King’s College London, 

Cicely Saunders Institute, Department of Palliative 


Kingdom, 3 Evangelical Hospital Oldenburg, Centre of 

Palliative Care, Oldenburg, Germany, 4 University 

Hospital Cologne, Department of Palliative Medicine, 

Cologne, Germany 

Background: Critical incidents are common in 

patients with advanced diseases. These crises 

contribute significantly to the burden of patients, 

informal caregivers and professional carers. Often 

crises result in repeated hospital admissions and 

hinder patients in their wish to stay at home. 

Currently, information necessary for the 

development of effective strategies for prevention and 

management of crises is lacking. 

Aim: To review and assess the current knowledge 

about typical crises in patients with COPD or lung 

cancer with emphasis on the patients’ and carers’ 

needs. 

Methods: Literature scoping exercise in MEDLINE, 

PsycINFO, CINAHL and the Cochrane Library using a 

search strategy of crisis or critical incident and COPD 

or lung cancer. The term crisis was preliminary 

defined as the (sudden) occurrence and escalation of a 

problematic situation necessitating external help. 

Results: Of 8,848 references retrieved, 268 studies 

were analysed in detail. In the literature, the term 

‚crisis’ is uncommon. Alternatively, the terms 

‚distress’ or ‚emergency’ are used by authors to 

describe critical incidents. Breathlessness and other 

symptoms (fatigue, pain) are highly prevalent and 

cause crises both in patients with COPD or lung 

cancer. In COPD, the acute exacerbation is the most 

important crisis bearing a high risk of hospitalisation 

and sudden death. In patients with lung cancer, 

receiving the diagnosis of lung cancer and being 

confronted with impending death are experienced as 

existential crises. Moreover, side effects of treatment 

contribute significantly to the burden of patients. 

While informal caregivers play a central role in the 

management of crises for patients, their experiences 

or needs are rarely described in the literature. 

Conclusion: Not only physical symptoms (especially 

dyspnoea) but also psycho-social problems cause 

crises in patients with advanced COPD or lung cancer 

and need to be considered in the prevention and 

management of crises. 




Involvement of Palliative Care Services 

Strongly Predicts Place of Death in Belgium 

Houttekier D. 1 , Cohen J. 1 , Van den Block L. 1 , Bossuyt N. 2 , 

Deliens L. 1,3 

1 Ghent University & Vrije Universiteit Brussel, Endof-Life 

Care Research Group, Brussels, Belgium, 

2 Scientific Institute of Public Health, Department of 

Epidemiology, Brussels, Belgium, 3 VU University 

Medical Center, Department of Public and 

Occupational Health, EMGO Institute for Health and 

Care Research and Expertise Center for Palliative Care, 


Introduction: Place of death is considered a quality 

indicator of end-of-life care and enabling people to die 

were they choose is an important aspiration of 

palliative care. This study aims to examine the 

association between involvement of palliative care 

services and place of death. 

Methods: Data about patient characteristics, use of 

general health care and involvement of palliative care 

services in non-sudden or expected deaths in all 

health care settings in 2005-06 (N=1690) were 

collected by a surveillance network of GPs in Belgium. 

Bivariate and multivariate associations between 

involvement of palliative care services and dying at 

home, in hospital, in a care home or in a palliative 

care unit were examined using Chi²-tests and Waldtests. 

Results: Palliative care services were involved in 

21.8% of deaths of those living at home, in 29.1% of 

those living in care homes and in 12.4% of deaths in 

hospital. People were more likely to die in their usual 

residence rather than in hospital if multidisciplinary 

palliative home care teams (OR:8.4,CI:4.7-15.1) or the 

palliative care reference persons of their care home 

(OR:9.4,CI:3.3-26.7) were involved. Involvement of 

multidisciplinary palliative support teams in hospitals 

was associated with lower chances of dying at home 

(OR:0.3,CI:0.1-0.9). High involvement of GPs was not 

directly associated with out-of-hospital death. 

Discussion: Involving multidisciplinary palliative 

home care teams and palliative care reference persons 

in care homes could support people in dying out-ofhospital. 

Health care policy-makers should consider 

strategies to improve involvement of palliative care 

services in all health care settings. 



Evaluation of Mentoring Workshops for 

Adult Care Social Workers and Fieldwork 

Support Assessors 

Hearn F. 1 

1 Sue Ryder, Leckhampton Court Hospice, 

Cheltenham, United Kingdom 

A recent collection of articles highlights the need for 

social work to continue to define its voice in end of 

life (EOL) care. A group of experienced specialist 

palliative care social workers have outlined a 4 level 

social care model to complement the National 

Institute for Clinical Excellence (NICE) models for 

psychological and other holistic aspects of care. This 

model is already being adopted by specialist social 

workers. This project now aims to take the model out 

to mainstream social care staff who are responsible for 

the assessment and care management of adults across 

the county, have EOL care within their remit and are 

based in either hospital or community. These staff 

work at the crucial interface with health care, notably 

in relation to Continuing Health Care. 

The key stages of the project are: 

- to engage operational managers in recognising the 

importance of supporting their staff to provide 

skilled, individualised EOL care. 

- to test a workshop model in which specialist 

palliative care social workers mentor targeted 

mainstream social care staff. 

- to evaluate the effectiveness of this model for 

enhancing the confidence and competence of social 

care staff in providing high qualty EOL care, 

particularly focusing on communication skills, 

assessment and advance care planning. 

Evaluation will be by pre and post workshop 

questionnaires, using the Evaluation Toolkit (June 

2010) designed by the University of Nottingham 

specifically for assessing the outcomes of EOL care 

learning events. Results will be analysed to measure 

effectiveness and provide a baseline to assess the 

viability of rolling out this model of mentoring 

nationally. The scheme has the potential to enhance 

the consultative role of specialist palliative care social 

workers. 

The project is being funded by the National End of 

Life Care Programme, as one of 8 pilot projects 

addressing the key objectives of the Social Care 

Framework (July 2010) and will be completed in April 

2011. 



Planning for Palliative Care: An Analysis of 

Associations between Causes of Death 

Johnston G.M. 1,2 , Lethbridge L. 3 , Fisher J. 3 , Zwaagstra A. 4 

1 Dalhousie University, School of Health 

Administration, Halifax, NS, Canada, 2 Cancer Care 

Nova Scotia, Surveillance and Epidemiology Unit, 

Halifax, NS, Canada, 3 Dalhousie University, Network 

for End of Life Studies (NELS) Interdisciplinary 

Capacity Enhancement (ICE), Halifax, NS, Canada, 

4 Capital Health, Halifax, NS, Canada 

Background: Palliative care can help persons with 

specific advanced chronic diseases. However, death 

certificates frequently report more than one cause of 

death. If persons have more than one disease 

contributing to their death, associations between 

diseases can affect functional decline and care 

requirements at end of life. 

Aim: To better understand needs at end of life by 

examining associations between causes of death on 

death certificates. 

Methods: The study population included all persons 

who died from 1998-2005 in Nova Scotia, Canada 

(N=63,431). Associations between cancer, 

Alzheimer’s, motorneuron, and chronic obstructive 

pulmonary disease (COPD), and heart, liver, and renal 

failure were estimated using logistic regression, 

controlling for sex, age and year of death. Selected 

subgroups were also examined. 

Results: Among all decedents, 21% had one cause of 

death, 27% had two, and 52% had three or more 

(mean: 2.8). Cancer was most commonly reported 

(33.0%), had a lower mean number of causes of death 

(2.4), and was negatively associated with all six other 

diseases. There were variations by cancer type. Lung 

cancer and COPD were associated (Odds Ratio 

(OR):1.4), as were colorectal cancer and liver failure 

(OR: 2.2). Alzheimer’s disease had no positive 

associations with other diseases. An association 

between Alzheimer’s and Parkinson’s disease (rather 

than all motoneuron) disappeared when age was 

controlled. Consistent with physiological processes as 

death approaches, renal and liver failure were 

positively associated (OR: 3.0). Persons dying of heart 

failure had a higher than average probability of COPD 

(OR: 1.8) and renal failure (OR: 2.6). 

Conclusions: Study findings were consistent with 

clinical knowledge and end of life disease trajectories. 

Results for narrowly defined conditions can differ 

from those for broad disease categories. Planning for 

the needs of persons at end of life can benefit from an 

understanding of relationships among diseases. 

Funding: CIHR. 



Communication about Continuous Sedation 

until Death: Physicians’ and Nurses’ 

Perspectives. A Focus Group Study 

Anquinet L. 1 , Rietjens J.A. 1 , Raus K. 2 , Mortier F. 2 , Sterckx 

S. 2 , Deliens L. 1,3 

1 Vrije Universiteit Brussel, End-of-life Care Research 

Group, Jette, Belgium, 2 Ghent University, Bioethics, 

Ghent, Belgium, 3 EMGO Institute for Health and Care 

Research, Department of Public and Occupational 

Health, Amsterdam, Netherlands 

Research aims: We studied Belgian physicians’ and 

nurses’ perspectives on the content and functions of 

communication about continuous sedation until 

death (CS). We also investigated the persons who are 

involved and the difficulties that arise in such 

communication according to physicians and nurses. 

Study design and methods: Qualitative data were 

gathered through four focus groups, two with 

physicians (n=4&n=4) and two with nurses 

(n=4&n=9). The participants were selected on the 

basis of their experience with performing CS. The 

focus groups took two hours and were recorded and 

transcribed verbatim. Afterwards, a multidisciplinary 

team of researchers coded and analyzed all emerging 

themes using constant comparison analyses. 

Results: Physicians and nurses stressed the 



importance of timely communication about CS with 

the patient, the patient’s family and the involved 

caregivers. Both physicians and nurses considered 

communication to be primarily a task of nurses. 

According to the physicians and nurses, 

communication serves several functions: exploration 

of the patient’s wishes at the end of life, information, 

preparation, adjustment of expectations and 

emotional support of the patient, the patient’s family 

and the medical team. Some nurses stated that they 

are also closely involved in advising physicians as to 

when and how CS should be performed. However, 

both physicians and nurses admitted that 

communication is sometimes poor or fails in practice 

because patients, the patient’s family and/or nurses 

are not always sufficiently involved in 

communication about CS. 

Conclusion: Timely communication about 

continuous sedation until death with the patient, the 

patient’s family and the involved caregivers is 

considered important by physicians and nurses, and 

considered to be primarily the task of the nurse. In 

practice however, timely and adequate 

communication with everyone involved sometimes 

appears to be challenging. 



A Comparison between Preferred and Actual 

Place of Care at the End of Life in Romania 

Horeica R. 1 , Ancuta C. 1 , Mosoiu D. 1 

1 Hospice Casa Sperantei, Brasov, Romania 

Aim: To establish the relationship between preferred 

and actual place of care at end of life from patients’ 

and carers’ perspectives. 

Methods: Combined methodology including a 

retrospective study of patients’ files and structured 

interviews of nurses caring for the patients using a 14 

item questionnaire. This study is a pilot study for a 

larger national survey. 

Results: We analysed 100 patients cared for in a 3 

month period. The patients’ preferred place of care at 

the end of life was 65% at home, 11% in an in-patient 

facility and 24% didn’t or couldn’t express their wish. 

60% of carers wanted to care for patients at home and 

40% preferred an in-patient facility. Actual place of 

death was at home in 75% of cases, in the hospice 

19% and in hospital 6%. Concordance between 

patients’ and carers’ wishes and actual place of death 

was 100% for those choosing inpatient services and 

77% for those choosing home care. There was no 

statistically significant difference regarding the 

number of carers available or the number of carers 

unable to be involved due to work commitments or 

old age in the two groups. 65% of carers who preferred 

the patient to be cared for at home were afraid of 

uncontrolled symptoms compared to 30% of those 

choosing in-patient care (p< 0,001). However this was 

not a reason for not keeping the patient at home at 

the end of life. The home care team had a major 

input; pain, agitation, dyspnoea, nausea and 

vomiting were totally controlled or kept at a mild 

intensity. A statistically significant difference between 

the 2 groups was the perceived inability of family 

members to cope with the nursing care or the fear of 

witnessing death - 31,7% in the home care group and 

67,5% in the in-patient group (p< 0,001). 

Conclusion: In Romania the majority of patients 

and carers prefer to be cared for at home at the end of 

life. A major barrier to achieving this is the perceived 

inability of carers to cope with basic nursing care and 

not the fear of uncontrolled symptoms. 



Physicians’ and Nurses’ Experiences with 

Continuous Palliative Sedation in the 

Netherlands 

Swart S.J. 1,2 , Brinkkemper T. 3 , Rietjens J.A. 4 , Blanker 

M.H. 5 , van Zuylen L. 4 , Ribbe M.W. 3 , Zuurmond W.W. 3,6 , 

Perez R.S. 3 , van der Heide A. 4 

1 ErasmusMC, Public Health, Rotterdam, Netherlands, 

2 Laurens Antonius IJsselmonde, Rotterdam, 

Netherlands, 3 VU University Medical Center, 

Amsterdam, Netherlands, 4 ErasmusMC, Rotterdam, 

Netherlands, 5 University Medical Centre Groningen, 

Groningen, Netherlands, 6 Hospice Kuria, Amsterdam, 

Netherlands 

Introduction: Continuous sedation until death is 

an intensively debated type of palliative sedation. For 

this far-reaching treatment, a multidisciplinary 

101 


(Thursday)


(Thursday) 


approach, including at least the physician and 

nursing disciplines, is considered important. We 

investigated how physicians and nurses experienced 

this practice, focusing on the clinical characteristics, 

the decision making process and the effect of 

continuous sedation. 

Methods: A structured questionnaire regarding their 

last patient receiving continuous sedation until death 

was sent to 1580 physicians and 576 nurses working 

in homecare, nursing homes, hospices or hospitals. 

Results: 606 Physicians (38%) and 278 nurses (48%) 

filled out the questionnaire. Of the described patients, 

75%-80% had cancer. The most frequently 

mentioned (>50%) severe symptoms were fatigue, 

pain and longing for death. Dyspnoea and pain were 

the most frequently mentioned decisive indications 

for starting continuous sedation. Patients and 

relatives were more often involved in the decisionmaking 

in nurses’ cases (76% and 90%, respectively) 

than in physicians’ cases (66% and 81%, respectively). 

Physicians more often reported that they had felt 

pressure to start continuous sedation than nurses 

(14% and 3%, respectively; p< 0.01); they reported 

less often a (co)-intention to hasten the patient’s 

death (15% and 24%, respectively; p< 0.01). 

Conclusions: Although the decisive indications for 

the use of sedation are in most cases severe physical 

symptoms, non-physical symptoms also contribute to 

the clinical picture. Physicians’ experiences differ 

from nurses’ experiences with respect to decisionmaking. 

End-of-life care can benefit from timely and 

adequate communication between physicians and 

nurses about all relevant aspects of the patients’ 

situation. 



Bispectral Index Monitoring of Palliative 

Sedation at the End-of-Life 

Bozzoni S. 1 , Zonato S. 2 , Agnelli L. 3 , Di Mauro P. 4 , Piva L. 1 

1 San Paolo Hospital, Palliative Care Unit, Milan, Italy, 

2 San Paolo Hospital, Oncology Department, Milan, 

Italy, 3 University of Milan, Medical Sciences 

department, Milan, Italy, 4 San Paolo Hospital, 

Anesthesia and Resuscitation Department, Milan, 

Italy 

Introduction: Conventional procedure in clinical 

practice at the end-of-life considers evaluating the 

degree of palliative sedation (PS) with clinical scales. 

Bispectral index (BIS) is a measure used to monitor 

depth of anesthesia by algorithmic analysis of 

electroencephalogram (EEG) and electromyography 

(EMG) traces to prevent awareness during anesthesia. 

To date, few evidences of BIS employing in PS have 

been reported. The present study was aimed at 

describing the BIS monitoring in oncologic patients 

undergoing PS in response to refractory symptoms at 

the end-of-life. 

Patients and methods: We monitored the 

symptom occurrence and BIS levels in 6 patients. 4 

cases had dyspnea, 2 had delirium. The symptoms 

control was reached with Midazolam at induction 

dose of 5 mg and mean maintenance dose of 26,7 

mg/die; combined drugs were morphine (median 

dose 80 mg/die) in all cases and haloperidol in 3. The 

consciousness status was also evaluated with Rudkin 

and Ramsay scales. 

Results: The BIS survey revealed high correlation 

between EEG and EMG values in all cases (median 

Kendall´s coefficient 0.42, range 0.23-0,74, P< 1e-5). 

Partial/complete correlation between BIS data and 

clinical scales was observed in most cases (4/6); the 

relationship between drug administration, symptom 

control and BIS suggested that symptoms could be 

treated even without precluding awareness. Through 

continuous signal acquisition BIS allowed to identify 

modulations otherwise not recognizable with clinical 

observation. Local spikes or oscillations were observed 

during survey; in the last minutes of life, we detected 

slight increases followed by sudden drops of both EEG 

and EMG signals together with abolition of synaptic 

transmission signals. 

Conclusions: Although further investigations are 

required, our data suggest that the constant objective 

assessment of consciousness status and the possibility 

to finely control the effect of drug titration could 

represent promising aspects for BIS in clinical practice. 


Withdrawn 



A Narrative Analysis of Stories of Dying with 

Motor Neurone Disease 

O’Toole S. 1 

1 University College Dublin, School of Nursing, 

Midwifery & Health Systems, Dublin, Ireland 

Background: Motor Neurone Disease (MND) is a 

complex disease with a wide range of disabling 

symptoms.Research on dying with MND has 

predominantly been bio-medical and has been 

divorced from the social, emotional, and bodily 

experience of the dying person.There are diverse and 

conflicting discourses on dying with MND arising 

from medical, social science and media sources.The 

dominant discourses are those of medicine - a 

peaceful death and the media - a terrible death 

involving choking and starvation.To date 

constructions of the moment of death with MND 

from the perspective of relatives have received little 

direct attention and this research has filled a gap in 

the knowledge of how people die with MND in this 

country by directly asking bereaved relatives to 

recount their storiesThe sociological concept that 

influences the studies theoretical understandings is 

social constructionism as although dying is an 

absolute reality, how it is understood and explained is 

a social construction(Freeman 2007, Gergen 1999). 

Aim: To gain an understanding of the dying 

experiences of people with MND from the perspective 

of individuals who witnessed the death of a relative 

with MND. 

Research question: What are the stories of dying 

with MND told by individuals who witnessed the 

death of a relative with MND? 

Methods: The approach involved the analysis of 

biographic narrative interviews with twenty one 

relatives. 

Findings: The findings describe the dying experience 

as a lengthy process resulting in a spectrum of 

experiences influenced by a range of factors not just 

the disease process.Overall, the results can increase 

understanding of dying with MND from the 

perspective of bereaved relatives and can inform 

health professionals about the experience of 

negotiating health care services for individuals with 

MND and their relatives. 

Recommendations: There is a need for the care of 

people with MND to follow the principles of palliative 

care throughout the disease trajectory. 



Distinguishing Nuances in Nonpharmacological 

Caregiving at the End of 

Life: The Example of Mouth Care 

Lindqvist O. 1,2,3 , Rasmussen B.H. 3 , Clark J.B. 4,5 , Daud 

M.L. 6 , Dickman A. 7 , Domeisen F. 8 , Fürst C.J. 1,9 , Lundh 

Hagelin C. 1,9,10 , Lundquist G. 11,12 , Miccinesi G. 13 , Sauter S. 1 , 

Tishelman C. 1,2 , on behalf of OPCARE9 

1 Stockholms Sjukhem Foundation, Research & 





of Nursing, Umeå, Sweden, 4 Arohanui Hospice, 

Education and Research Unit, Palmerston North, New 

Zealand, 5 MidCentral Health, Hospital Palliative Care 

Team, Palmerston North, New Zealand, 6 Pallium 

Latinoamérica Asociación Civil (NGO), Buenos Aires, 

Argentina, 7 Marie Curie Palliative Care Institute 

Liverpool, University of Liverpool, Liverpool, United 

Kingdom, 8 Cantonal Hospital St.Gallen, Center for 

Palliative Care, St.Gallen, Switzerland, 9 Karolinska 


Stockholm, Sweden, 10 Sophiahemmet University 

College, Stockholm, Sweden, 11 Umeå University, 

Department of Radiation Sciences - Oncology, Umeå, 

Sweden, 12 Palliative Team Västerbergslagen, County 

Council of Dalarna, Ludvika, Sweden, 13 Cancer 

Prevention and Research Institute, Clinical 

Epidemiology, Florence, Italy 

Within OPCARE9, an EU 7 th framework project 

aiming to optimize cancer care in the end-of-life, we 

conducted a scoping exercise to identify the variety of 

non-pharmacological care-giving activities (NPCA) 

performed in the last few days of life. Palliative care 

staff in each facility first brainstormed to generate a 

list of care-giving activities in spoken, rather than 

theoretical or abstract language, with as detailed 

descriptions as possible. Each list was then positioned 

in a central place, with staff asked to complement it 

with new activities for up to 3-4 weeks. 

These lists generated 985 care-giving activities from 

the 9 OPCARE countries, representing 16 different 

inpatient palliative care units/hospices, home care 

teams, and consultation teams. Approximately 80% 

were performed by nursing staff, approximately 15% 

by physicians, and the remainder performed by a 

wide range of staff. 

The largest group of activities related to Carrying out or 

abstaining from bodily care and contact. We illustrate the 

complexity, sophistication and variety in such care 

using the example of mouth care, which was 

particularly prominent in this data set. A wide 

diversity of activities were carried out, as evidenced by 

54 statements ranging from generic descriptions to 

details of different ways to clean or moisten a person’s 

mouth, lips, and tongue, to teaching family members 

to provide oral care for the individual’s comfort. 

We found notable variation in what is often considered 

a basic and trivial form of care. Bodily care for the dying 

person is often conceptualized as ‘basic care’. We argue 

here that this care for basic fundamental human needs 

close to death is instead complex and sophisticated; it is 

necessary to better distinguish nuances in nonpharmacological 

care-giving in order to acknowledge, 

respect, and further develop compassionate and 

individualized end-of-life care. 



End of Life Care in Acute Oncology: The Search 

for a Transition 

Jamal H. 1 , Wilson C. 2 

1 Mount Vernon Hospital Cancer Centre, Palliative 

Medicine, Middlesex, United Kingdom, 2 Mount 

Vernon Cancer Centre, Supportive Oncology, 

Middlesex, United Kingdom 

Background: Translating UK End of Life Care 

Strategy into cancer care is problematic if patients and 

clinicians deny the imminence of death and focus on 

life-prolonging treatment. Developments in anticancer 

treatments have resulted in patients being 

treated much later in the trajectory making it difficult 

to clearly identify the transition to end of life. 

Method: An audit of all deaths in a large UK Cancer 

Centre in 2009 was undertaken. Deceased patients’ 

medical notes were analysed retrospectively to 

identify: issues in the dying process; specialist 

palliative care involvement; a possible transition to 

end of life. 

Findings: 1253 patients were admitted to the inpatient 

wards of Mount Vernon Cancer Centre in 

2009; 34 patients (2.7%) died. 52% (n=18) had been 

diagnosed for < 6months; 82% (n=28) were 

undergoing chemotherapy treatment. All were 

admitted as emergencies: 65% had been referred by 

their GP and none had preferences of care 

documented. 61% were admitted for symptom 

management or because they might be dying; the 

remainder had complex disease and/or treatmentrelated 

problems. The majority died within 7 days of 

admission: 26% (n=9) within 48 hours. The majority 

of patients had multi-disciplinary team involvement 

and 55% had been seen by the Specialist Palliative 

Care Team. 73% of the patients were identified as 

‘dying’; 23% (n=8) were placed on the Liverpool Care 

Pathway. Five patients had complex symptom 

management needs; 26% (n=9) were noted to have 

been ‘agitated’ and/or ‘distressed’ in their final hours. 

A transition to end of life care could be retrospectively 

identified in a minority of patients who had either 

had multiple in-patient admissions in the preceding 

weeks or a rapid decline in performance status. 

Conclusion: A small number of patients died in the 

Cancer Centre in 2009. However, the majority of 

patients had presented with advanced or incurable 

disease within the preceding year, and were receiving 

chemotherapy late into the disease trajectory. 



A Paradigm Organisational Shift in End of 

Life Care: 2 London Locality Register Pilots - 

Hospital2Home and ELiPse 

Riley J. 1,2 , Cheung C.C. 3 , Millington Saunders C. 4 , Smith 

C. 1,2 , Swann D. 5 , Hough L. 1 , Francis M. 3 , Nadick J. 4 



United Kingdom, 2 Imperial College London, London, 

United Kingdom, 3 Camden, UCLH & Islington ELiPSe 

Palliative Care Team, London, United Kingdom, 

4 Richmond and Twickenham Primary Care Trust, 


London, United Kingdom, 5 St Christopher’s Hospice, 


Background: The End of Life Care (EoLC) Strategy 

advocated the development of electronic locality 

registers as a way of improving the co-ordination of 

care for people at the end of life and their families and 

carers. Two EoLC Register pilot sites were appointed in 

London; Camden PCT (ELiPSe) and The Royal 

Marsden NHS Trusts (H 2 HCR). These two pilot sites 

have worked together to develop a single solution for 

London. 

Aims: 

Primary 

Enable more patients to die in their preferred place 

Secondary 

Ensure legible record 

Share quality information contemporaneously - 

updated as the patient’s needs and wishes change 

Web-based - allow multiple legitimate providers of 

care to access single record 24/7 

Audit outcomes 

Decrease unnecessary hospital admissions 

Decrease costs 

Methods: The paper version of the form currently 

used to share information between the Out of Hours 

GPs (OOH) and the London Ambulance Service (LAS) 

has been tried and tested in paper version over the 

past 2 years. It is currently faxed to the OOH and the 

LAS where the forms are transcribed into their own 

records. The original form (datasets) has been used to 

develop the template. It is fully integrated into the 

OOH GP software that covers 95% England. Training 

modules 

Identifying patients 

Consenting of patients onto the register 

Adding patient data to the register 

Understanding of a managed care pathway for EOLC 

patients 

Discussions surrounding sensitive areas e.g. preferred 

place of death 

Clinical/information governance 

Result: The following will be available by May next 

year 

Patients’ preferences of place of death, actual place of 

death and variance 

Hospital & hospice admissions 

Preliminary costs 

Conclusion: Results of these pilots will inform the 

Department of Health regarding a National roll-out of 

EOLC registers for England. 



Recognition of Imminent Death; Do Nurses 

and Physicians Agree? 

Witkamp E. 1 , van Zuylen L. 2 , van der Rijt C. 2 , van der 

Heide A. 3 

1 Erasmus University Medical Center, Public Health and 

Medical Oncology, Rotterdam, Netherlands, 2 Erasmus 

University Medical Center, Medical Oncology, 

Rotterdam, Netherlands, 3 Erasmus University Medical 

Center, Public Health, Rotterdam, Netherlands 

In the Netherlands 35.000 patients yearly die in an 

acute hospital. Recognition of imminent death by 

physicians is known to be late, but little is known 

about recognition by nurses. 

Our aim was to investigate agreement in recognition 

of imminent death between physicians and nurses. 

For every deceased patient older than 18 years and 

admitted at one of the 18 participating hospital wards 

for at least 6 hours before death, an involved 

physician and nurse were asked to fill in a 

questionnaire on foreseeing approaching death and 

on characterizing the moment of death. 

Between June 2009 and August 2010 329 deceased 

patients were included. We analyzed questionnaires 

on 128 patients for whom we received both a nurse’s 

and a physician’s report: 59% was male, their median 

age 67 years, the median duration of their last 

admission 11 days and 44% had cancer. 

In 80% of all patients, both nurses and physicians had 

‘more or less’ foreseen the imminence of death. In 

10% it was foreseen by one of both disciplines, mostly 

by physicians. When both had foreseen dying, they 

fully agreed on the moment at which death became 

imminent in 35%, but in 20% there was a difference 

of > 24 hrs. In most of these cases, physicians had 

foreseen imminent death > 24 hrs earlier than nurses. 

Nurses more often characterized the moment of death 

as ‘completely unexpected’, ‘rather fast’, ‘rather 

sudden’ or ‘unexpected’, whereas physicians more 

often thought that death had occurred ‘expectedly’, 

‘in time’ or at an ‘appropriate’ moment. Agreement 

between nurses and physicians in using these terms 

varied from poor (k 0,06) to moderate (k 0,5). 

Conclusion: Both nurses and physicians are often 

aware of imminent death, but in 10% one of the 

disciplines is not. When foreseen by both the 

moment of awareness differs more than 24 hours in 

20%. Mostly physicians reported to have foreseen 

imminent death earlier. In providing optimal quality 

of care communication on approaching death should 

be improved. 



Patient and Caregiver Needs in the Patient 

Last Week of Life at Home 

Dobrina R. 1,2 , Vianello C. 3 , Taboga C. 4 

1 University of Udine, Nursing, Udine, Italy, 2 TPS 

Assistenza Soc Cooperativa Sociale, Trieste, Italy, 

3 O.D.O.-AVAPO, Venice, Italy, 4 Home Care Service 

ASS 4 Medio Friuli, Udine, Italy 

Studies analysing comparisons between patients and 

caregivers needs in adult cancer patients last week of 

life at home are lacking in literature. 

Objective: To explore main symptoms and needs in 

the last week of life of cancer patients and their 

caregivers at home and analyse the relationships 

between these factors. 

A descriptive design was used involving 

semistructured interviews. A total of 23 patientcaregiver 

couples were identified during the study 

period in a Italian(Venice) home care service.Of the 

23 couples interviewed, 11 patients and 11 caregivers 

were selected for they were interviewed in patients last 

week of life. Patients mean age 54 years (range 44-68) 

with women 62.5%.Caregivers mean age 50 

years(range 20-64) with women 81,8%.The interview 

contained open-ended questions such as:”What are 

your problems and needs at this moment?” and closeended 

questions such as:”How are you feeling right 

now?”.The open-ended questions were tape-recorded, 

transcribed and analyzed using grounded theory 

methods.The close-ended questions were analyzed 

using descriptive statistics. 

Results: Patients feeling well to quite well, even 

within the 72 hours before dying reported needs as 

moving more, walking or cultivating their hobbies 

having their caregivers feeling well. Patients reporting 

severe suffering had uncontrolled pain and their only 

need was to have their pain controlled. Significant 

associations were found between patient 

uncontrolled symptoms and caregivers distress and 

burden.Moreover caregivers with patient in pain 

desired patient to die soon while patients with 

distressed caregivers felt being a burden for their carer. 

Conclusions: Patient uncontrolled symptoms 

distress caregiver which in turn worsen patient quality 

of life. When patient symptoms are controlled, his 

needs remain unmet while caregiver feels good. 

Clinicians are encouraged to assess both patient and 

caregiver symptoms and needs to identify each couple 

patient-caregiver unique priorities. No funds 



Sedation in Palliative Care 

Ferraz Gonçalves J. 1 , Cordero A. 2 , Almeida A. 1 , Cruz A. 3 , 

Rocha C. 3 , Feio M. 4 , Silva P. 1 , Barbas S. 2 , Neves S. 4 

1 Instituto Português de Oncologia do Porto, Porto, 

Portugal, 2 Hospital de Santa Luzia, Elvas, Portugal, 

3 Unidade Local de Saúde de Matosinhos, Matosinhos, 

Portugal, 4 Instituto Português de Oncologia de Lisboa 

Francisco Gentil, EPE, Lisboa, Portugal 

Aim: To study the practice of sedation by Portuguese 

palliative care teams. 

Methods: The teams included in the website of the 

Portuguese Association for Palliative Care were 

invited to participate. Data from all the patients 

treated since April to June 2010 were recorded. 

Sedation was defined as the intentional 

administration of sedative drugs for symptom 

control, except insomnia, independently of the 

consciousness level reached. 

Results: From the 19 teams invited only 4 actually 

participated. The 4 teams run: 1 inpatient care service, 

3 hospital support teams, 1 home care team. During 

the study period 170 patients were treated: 160 (94%) 

cancer patients and 10 non-cancer patients. 27 (16%) 

patients were sedated: 16 intermittently, 14 

continuously; 3 of those were sedated intermittently 

and continuously. Age: median 66 years (41–91); sex: 

19 (70%) male and 8 female. There were no patients 

sedated in home care regimen. The reasons for 



intermittent sedation were: delirium, 13 (81%); 

dyspnea, 1 (6%); hemorrhage, 1; suffocation 1. The 

reasons for continuous sedation were: delirium, 6 

(43%); dyspnea, 2 (14%); delirium+dyspnea, 2; pain, 1 

(7%); pain+vomiting, 1; suffocation, 1; 

psychological/existential suffering, 1. The drugs used 

for sedation were: midazolam, 20 cases (67%); 

midazolam+haloperidol, 5 (17%); 

midazolam+morphine, 2 (7%); levomepromazine, 1 

(3%); midazolam+levomepromazine, 1; haloperidol, 

1. The doses: midazolam, median 7,3 mg (5-105); 

haloperidol, 5 mg; morphine, 25 and 36 mg; 

levomepromazine, 50 and 250 mg. 2 patients who 

had undergone intermittent sedation were discharged 

home and 1 was transferred to another institution; in 

these 3 cases the reason for sedation was delirium. 

From the patients on continuous sedation, 9 (64%) 

patients maintained oxygen, 12 (86%) hydration and 

6 (43%) alimentation. 

Conclusion: The teams that have participated in this 

study use sedation for the reasons and with the drugs 

reported by others. The rate of patients sedated seems 

also reasonable. 



Hospice vs. Hospital: Is There a Difference in 

Pharmacotherapy of Dying Cancer Patient? 

Svetlakova L. 1 , Slama O. 1 , Svetlak M. 2 , Kabelka L. 3 , 

Slamova R. 4 , Vyzula R. 1 

1 Masaryk Memorial Cancer Institute, Department of 

Oncology, Brno, Czech Republic, 2 Faculty of Medicine, 

Masaryk University, Department of Physiology, Brno, 

Czech Republic, 3 The House of Pain-Treatment with a 

Hospice of St. Joseph, Rajhrad, Czech Republic, 4 St. 

Elizabeth Hospice, Brno, Czech Republic 

Research aims: It is extended view among palliative 

care specialist that pharmacotherapy in dying cancer 

patients in oncological hospitals does not often reflect 

their specific needs. Patients are supposed to be at risk 

of over- or undertreatment. With the aim to verify 

this view we have performed the comparison of 

pharmacotherapy delivered within last day of life. 

Study design and methods: Data were collected 

on a random sample of patients who died for terminal 

cancer (i.e. non-sudden, expected death) in cancer 

center (N=54; mean age 59,9±1,7) and hospices 

(N=103; 70,8±1,7). 

Results: There was a statistically significant 

difference between cancer center and hospice in 

particular drug use. The significant difference was 

found in the use of: antibiotics (hospice 0,97% vs. 

cancer center 27,8%), anticoagulants (hospice 12,5% 

vs. cancer center 42,6%), PPI (hospice 26,2% vs. 

cancer center 64,8%), laxatives (hospice 35,9% vs. 

cancer center 7,4%), psychotropic drugs - 

antidepressant, anxiolytics, antipsychotics (hospice 

72,8% vs. cancer center 38,8%), total dose of opioids 

analgesics (hospices: median 150 mg vs. cancer center 

median 90 mg; p< 0,001). Significant difference was 

also found in the rate of parenteral hydration (hospice 

39,8% vs. cancer center 83,3%). 

Conclusion: There is a difference between hospice 

and academic cancer center in drug use in the last 24 

hours of patient´s life. Higher proportion of use of 

antidepressants and anxiolytics as well as higher 

mean doses of opioid analgesics and lower artificial 

hydration rate in hospices may be the indicators of 

appropriate comfort-oriented care of dying patients. 

The results of our study partly support the palliative 

care specialist view that pharmacotherapy of dying 

patients in acute care cancer center often does not 

reflect specific context and goals of end of life care. 

The possible consequences and interpretations of 

results will be discussed. 



Nurse Death Attitudes and Palliative Care 

Gama G. 1 , Barbosa F. 2 

1 Portuguese Catholic University, Lisboa, Portugal, 

2 University Hospital Lisbon North, Lisboa, Portugal 

Death attitudes of health professionals make a link 

between perceived death as final event and important 

aspects of daily life. 

Our aim is to assess different dimensions of death 

attitudes in nurses working in different hospital 

settings as compared with those working in palliative 

units. 

Methodology: A sample of 363 nurses from different 

hospital and palliative care units ( 86.8% female, 

103 


(Thursday)


(Thursday) 


mean age 30.3, mean years of work experience 7.67) 

were assessed by a socio-professional questionnaire 

and DAP-R (Death Attitudes Profile) 

Results: We found significant higher escape 

acceptance (p< .0001) in older nurses and higher 

religious acceptance (p< .0001) in females. These two 

acceptances were also significantly higher (p< .0001; 

p< .01) in nurses with more professional experience. 

Death fear, avoidance and escape acceptance were 

significantly higher in hematologic and oncologic 

departments (p< .01;p< .0001;p< .0002) compared 

with palliative care units. 

Conclusions: We conclude that female, older and 

more experienced nurses show higher levels of escape 

and religious acceptance and that nurses working in 

hematologic and oncologic setting show more burden 

attitudes than palliative care nurses. The implications 

from pre and pos-graduated nurse training are 

explored. 



Conflicts at the End of Life: Perceptions of 

Canadian Health Care Providers 

Archambault M.-A. 1 , Duval M. 2 , Roy-Gagnon M.-H. 3 , 

Masse H. 3 , Doucet H. 4 , Humbert N. 5 , Gauvin F. 6 , Payot 

A. 6 , Stojanovic S. 7 

1 Le Phare, Enfants et Familles, Montreal, QC, Canada, 

2 CHU Sainte-Justine, Head Chief of Hematology- 

Oncology, Montreal, QC, Canada, 3 Centre de 

Recherche du CHU Sainte-Justine, Montreal, QC, 

Canada, 4 University of Montreal and CHU Sainte- 

Justine, Bioethics, Montreal, QC, Canada, 5 CHU 

Sainte-Justine, Centre d’Excellence en Soins Palliatifs, 

Montreal, QC, Canada, 6 University of Montreal and 

CHU Sainte-Justine, Montreal, QC, Canada, 7 CHU 

Sainte-Justine and Le Phare, Enfants et Familles, 

Montreal, QC, Canada 

Objective: The goal of this study was to explore the 

perceived conflicts experienced by paediatric health 

care providers when discussing end of life and DNR 

issues. 

Methods: The study was set in an academic pediatric 

hospital, with the goal of describing perceived 

conflicts, as to the where, why, when and how they 

happened. A close-ended questionnaire was sent to 

2300 health care providers working at CHU Sainte- 

Justine (including physicians, nurses, social workers, 

respiratory therapists, psychologists, ergotherapist, 

physiotherapists, etc). 

Results: The questionnaire was answered by 946 care 

providers (41% response rate). Fifty percent of these 

providers where from the nursing staff and 20% 

where physicians. Data showed that 70% of 

responders have taken care of a child that eventually 

died, 71% of these have participated or have 

witnessed a DNR discussion/decision and 72% of this 

same group have experienced conflicts surrounding 

the discussion/decision process. Fifty eight percent of 

responders perceived that the conflict originated 

among the health care team and 32% of responders 

thought that the conflict was between a parent and 

the health care team. More than 60% of responders 

evaluated that the conflict emerged from 

fragmentation and/or discontinuity of care by the 

health care team. More than 76% of responders felt 

they were not prepared for this type of situation. Fifty 

five percent of responders felt that this type of conflict 

is one of the most important ethical issue to address in 

our institution. 

Conclusion: Conflicts around end-of life decisions 

in children are perceived as frequent and major 

ethical problem in our tertiary academic hospital. 

They are more frequent among members of the health 

care team than between the health care team and the 

patient’s family. Discontinuity of care seem to be the 

leading cause of these conflicts. Health care workers 

don’t feel well prepared to face these situations. 



Canadian Family Physicians’ Experiences 

with Conflict during End-of-Life Decision 

Making Discussions with Substitute-decision 

Makers of Dying Patients: A Report on 

Preliminary Findings 

Tan A. 1 , Manca D. 1 

1 University of Alberta, Family Medicine, Edmonton, 

AB, Canada 

Conflict with substitute-decision makers is not 

uncommon when Family Physicians/General 

Practitioners care for incompetent dying patients. 

This can have a negative impact on everyone 

involved, including the physician and the patient. 

Understanding how to best manage these situations 

may improve Family Physician/surrogate-decision 

maker relationships when these conflicts arise. This 

may ultimately improve the medical care of dying 

patients. Family Physicians may also learn ways to 

cope with this source of professional stress. Insights 

on how to deal with these situations may help shape 

future curriculum development for undergraduate 

and postgraduate medical education in bioethics and 

communication skills. To develop a better 

understanding, we used a grounded theory 

methodology to explore the experiences of Canadian 

Family Physicians who have encountered conflict 

during end-of-life discussions with a substitutedecision 

maker for an incompetent dying patient in 

hospital, hospice, clinic, or at home. In-depth, semistructured 

interviews obtained participants’ 

reflections of recent experiences of conflict with a 

substitute-decision maker. Purposeful sampling 

aimed to obtain a maximum variation in the sample 

for such factors as years in practice, gender, and type 

of clinical practice. Interviews were audio-taped and 

transcribed verbatim. The transcripts, interview field 

notes and project memos have been analyzed using 

an iterative process involving the constantcomparative 

method to identify emerging key 

themes. Preliminary findings have identified factors 

that contribute to the development of conflict in 

these end-of-life discussions. Insight has also been 

gained on how to aid in the resolution of the conflict 

through “Finding Common Ground” and its 

properties and process for doing so. Facilitating factors 

and barriers to achieving “Common Ground” have 

also been identified. 

Partially funded by a Covenant Health Research Centre 

Grant (Hospital Foundation) 



Implementation of the Liverpool Care 

Pathway for the Dying Patient (LCP-I) in the 

Hospice Setting: Development and 

Preliminary Test of the Italian LCP-I 

Programme 

Di Leo S. 1 , Bono L. 1 , Ottonelli S. 1 , Beccaro M. 1 , Costantini 

M. 1 

1 National Cancer Research Institute, Regional 

Palliative Care Network, Genoa, Italy 

Aims: This study was aimed at developing and 

preliminary testing the LCP-I programme within the 

hospice setting in Italy. 

Design and methods: According to the Medical 

Research Council Framework (MRC) for the 

Evaluation of Complex Intervention, this study was 

divided into 3 phases: 

1) scientific literature review of the LCP 

implementation process with a specific focus on the 

hospice setting. Revision and adaptation of the 

original 10-step implementation programme to the 

Italian hospice setting; 

2) development of indicators for evaluating the 

quality of the process of implementation; 

3) preliminary testing and evaluation of the LCP 

programme in a sample of Italian selected hospices 

(all hospices were already part of another study aimed 

at assessing the effectiveness of the LCP-I programme 

in hospital). 

Results: Only 1 paper on LCP in hospice was 

identified. A 7-step implementation programme 

specific for Italian hospices was developed. Two sets of 

qualitative and quantitative indicators, i.e. internal 

and external evaluation system, were identified as 

part of the quality evaluation of the implementation 

process. This programme was subsequently piloted in 

7 Italian hospices that was analyzed as case series. A 

high proportion of physicians (88%) and nurses 

(93%) attended the training phase. LCP-I 

documentation was used for 64% patients deceased in 

hospice during the experimental phase. Most LCP-I 

goals were well documented, with the exception of 

goals concerning insight into illness awareness, 

spiritual support, bowel care and information of GP 

on patient’s terminal phase and death. About 75% 

professionals evaluated positively the introduction of 

the LCP-I and over 80% agreed to maintain the LCP-I 

documentation in hospice. 

Conclusion: According to the MRC framework, this 

can be interpreted as a phase 0-1 study. Our findings 

show that the LCP-I implementation within hospices 

is feasible and evaluable, and justify the development 

of a phase II pilot study. 



Patient and Family Experiences of Care in the 

UK: A Systematic Review of Research Evidence 

between 1997 and 2010 on Patient and Family 

Experiences of Information Disclosure, 

Communication and Decision-making 

Involvement 

Hui V.K.-Y. 1 , Bailey C. 1 , Addington-Hall J. 1 , Cancer, 

Palliative & End of Life Care 



Aims: Ensuring that patients have a positive 

experience of care has been identified as one of the 

five high-level outcome domains for the NHS in 

England. To provide baseline data on contemporary 

experiences of UK end of life care, a systematic review 

was performed to identify all literature on end of life 

care experiences between 1997 and 2010 in the UK. 

Results relating to information disclosure, 

communication and decision-making involvement in 

end of life care are presented here. 

Method: Six databases - AMED, EMBASE, OVID 

MEDLINE, CINAHL, PsyInfo, BNI (1997-2007) were 

searched. Inclusion criteria were primary UK studies 

on patients’ and/or carers’ perspectives; published 

between 1997 and 2010; concerned with experiences 

of health and social care services in end of life, 

palliative, terminal or hospice care by adult patients; 

findings relate to information disclosure, 

communication and decision-making. 

Results: 25 of 4558 citations met inclusion criteria. 

Patients and carers were often given inaccurate 

information and had limited understanding of their 

or their relatives’ illness. They also reported 

inadequate information disclosure and poor access to 

information. Most patients and carers had had an end 

of life discussion. Though the discussion was helpful 

in death preparation, not all patients and carers 

welcomed it. Open, honest communication and staff 

with positive personal attributes were identified as 

two factors facilitating end of life discussion. 

Involvement in end of life care planning was low but 

patients varied greatly in their desire to be involved in 

planning their care. 

Conclusions: Findings suggest room for 

improvement in communication with patients and 

families in UK end of life care. Patients and carers 

varied in their preference for information delivery, 

amount of information disclosure, emotional 

response to end of life discussion and degree of 

involvement in care planning. 

This study is funded by the Cancer Experiences 

Collaborative. 



Palliative Emergencies and “End-of-Life” 

Decisions in Germany: A Questionnaire-based 

Multi-centre Study 

Wiese C.H.R. 1 , Lassen C.L. 1 , Bartels U.E. 2 , Ruppert D.B. 3 , 

Graf B.M. 1 , Hanekop G.G. 4 

1 University of Regensburg, Anaesthesiology, 

Regensburg, Germany, 2 University of Ulm, 

Anaesthesiology, Ulm, Germany, 3 Hospital of 

Lüneburg, Lüneburg, Germany, 4 University of 

Göttingen, Anaesthesiology, Göttingen, Germany 

Background: Outpatient palliative emergencies 

account for approximately 3% of all emergency 

applications in Germany. In those cases, it is 

important to be in tune with patients´ wishes. The 

purpose of the current investigation was to identify 

prehospital emergency physicians´ (EP) educational 

content concerning ethical and “end-of-life” 

decisions (EoLD) and their legal education concerning 

advance directives (AD). 

Methods: An anonymous self-provided survey was 

given to all 150 EPs from three areas in Germany (selfadministered 

survey; mixed methods design; fourteen 

questions). Main data were collected for four types of 

information: 

(1) demographics, 

(2) experiences with AD, 

(3) experiences with ethical and EoLD, and 

(4) influence of AD concerning therapeutically 

decisions. 

The local ethics committee approved the study. The 

study was supported by the “Kröner foundation” 

Munich, Germany. 

Results: There was a 69% response rate (n=104). 

Demographics were comparable (p>0.05). EPs 

experiences in palliative care had a statistically 


significant influence on the treatment of palliative 

emergencies [1]. Overall, 89% of the questioned EPs 

treated patients for whom there were ADs. The 

existence of an AD influenced the therapy decision in 

about 77% of all described situations. 87% of the EPs 

reported the need for defined “End-of-Life Care 

Pathways” and the definition of “palliative patient” 

and/or “palliative emergency”. 82% desired the need 

for educational training concerning “EoLD and the 

validity of ADs. 

Conclusion: In Germany, knowledge about the 

integration of palliative medical care aspects into 

emergency medical care has only been studied to a 

limited extent. The present study was able to detect 

high insecureness in dealing with ADs and EoLD in 

palliative emergencies. Our results suggest EPs need 

more education in legal questions concerning ADs 

and EoLD. 

[1] Wiese CH at al. Palliat Med 2009 



What Are the Potential Barriers to 

Implementing a Policy Concerning Do Not 

Attempt Resuscitation Orders for Palliative 

Patients within the Community? 

Seeley S.K. 1 , Munday D. 2 

1 Clifton Road Surgery, Rugby, United Kingdom, 

2 Warwick University, Medical School, Coventry, 


Aim: To identify potential barriers to implementing a 

Do Not Attempt Resuscitation policy in the 

community for palliative care patients. This is to 

inform the development of local guidelines aimed at 

preventing inappropriate resuscitation attempts in 

this group. 

Study design: A systematic review. 

Data sources: Electronic databases, grey literature 

and hand searches. 

Study selection: Studies were included that looked 

at the experience of implementing Do Not Attempt 

Resuscitation orders (DNAR)s within hospitals, 

hospices or the community within the United 

Kingdom from 1999 onwards. If no literature was 

available for any of the three settings, papers from 

abroad were included for appraisal. Both quantitative 

and qualitative studies were included. 

Data synthesis: Narrative synthesis. 

Results: 22 British papers met the criteria. 20 were 

hospital and 2 hospice based with none from the 

community. Staff found guidelines difficult to 

implement and discussed decisions with patients 

infrequently. Patients wished to be involved in 

decisions but had misconceptions about 

resuscitation. Specific DNAR forms improved clarity 

but did not reduce the rate of resuscitation attempts. 

As there was no British literature regarding the 

community, 12 studies from abroad were appraised. 

Together these showed strong support for community 

DNAR policy, but implementation was hampered by 

significant practical issues compounded by poor 

communication and education. One useful 

development was the introduction of policy allowing 

verbal DNARs. 

Conclusion: Studies from hospitals and hospices 

show that staff continue to find implementing 

DNARs difficult, in particular discussing decisions 

with patients despite patients wishing to be involved. 

Evidence from abroad shows that community DNARs 

can work well but require significant education. Local 

policy development will need to be sensitive to 

patient discussion and anticipate the need for both 

robust communication of decisions and staff 

education. 



Last 24 Hours of Life in Hospice and Home 

Care Patients: FCP*Italian Multicenter 

Prospective Study 

Zucco F.M. 1 , Guardamagna V.A. 1,2 , Piovesan C. 1 , Sardo 

V. 1 , Moroni L. 2 

1 G.Salvini Hospital Trustee, Dpt of Anesthesia, 

Intensive Care, Pain Therapy and Palliative Care, 

Garbagnate Milanese, Italy, 2 Federazione Cure 

Palliative, Abbiategrasso (MI), Italy 

Research aims: Data collection about last hours of 

life of palliative care patients (pts). 

Study design and methods: Related-symptoms, 

support to families and medical procedures were 

studied in the last 24 hours of life in palliative care pts 

enrolled by 46 Italian PC Centers. 

Prospective (same 15 days enrollment period), 

multicenter (46 Italian Palliative Care Units), 

observational study. Data collection period/patient: 5 

weeks/Hospice pts (max T5w in HO); 9 weeks/Home 

care pts (max T9w in HOCA) or until death (“Exitus” 

pts). 

Results: Patients enrolled: 397 (52% men, 48% 

women; 90% over 55 years-old; 98% cancer pts), 203 

(51%) in HOCA, 188 (47.3%) in HO and 6 in other 

assistance settings. At the end of the observation period 

(maxT5w in HO and maxT9w in HOCA) % of died pts 

was 80% in HO and 71% in HOCA. The analysis of the 

Specific Section of the “Patient Questionnaire” was 

possible in 60% of all HOCA pts enrolled and in 75% of 

HO pts. It was observed: 1) Psycho-motor agitation 

(13.9%; 18.1% HO vs 9.9% HOCA); 2) Psychological 

discomfort (8.1%); 3) Pain (7.3%; 9% HO vs 5.4% 

HOCA); 4) Other symptoms (12.3%: more in HO: 

16%). During the last 24 hours 28.2% pts were treated 

by a Palliative Sedation Protocol in 28,2 % of all died pts 

(36.7% in HO vs 20.7% in HOCA). Only a minority of 

pts were conscious of their short-term prognosis (6.9% 

vs 14.8%). Relatives of HO pts resulted to be more 

prepared to the mourning (69.7% in HO vs 54.2% in 

HOCA). 

Conclusion: During the last 24h of life not all 

patients are free of symptoms, even if assisted in a 

palliative care setting. 

*The Study was coordinated by Federazione Cure 

Palliative-FCP (www.rete-federazione-curepalliative.org), 

and granted by Ministry of Health (€ 

400.000,00) 



Exploring Nurses’ Experiences of ‘Bad’ Dying 

and Death 

Meidell L. 1,2 , Rasmussen B.H. 1,2 

1 Umeå University, Nursing, Umeå, Sweden, 

2 Axlagården Hospice, Umeå, Sweden 

Within the field of palliative care, a deeper 

understanding of factors influencing how quality of 

dying and death is evaluated is needed. Descriptions 

of ‘good’ dying are plentiful, but there is less 

understanding of what constitutes ‘bad’ dying and 

death. The aim of this study was therefore to explore 

nurses’ experiences of ‘bad’ dying and deaths. 

Licensed practical and registered nurses (n=170) 

participating in different courses in palliative care 

were asked to write a short narrative about an 

experience they had had related to ‘bad’ dying and/or 

death. These 170 stories were analyzed according to 

thematic narrative analysis. All narratives were found 

to contain one or more of the following five themes: 

1) lack of control in managing severe symptoms 

2) communication problems within the team, or 

3) between staff, patients, and family and 

4) conflicts within the family unit. 

A fifth theme generating great frustration involved 

situations in which the nurse experienced lack of 

clarity about a patient’s transition to end-of-life care, 

which led to what was perceived as meaningless 

treatments and traumatic resuscitations. Such 

situations were described as undermining the dignity 

of the dying person and her/his family. Concepts 

frequently used to describe “bad dying” included 

extreme descriptions of pain and vomiting, severe 

suffering, and an atmosphere characterized by 

anxiety, crying, pain and screaming, which lead to 

nurses feeling horror, insufficiency and 

powerlessness. Such experiences were described as 

being imprinted in the minds and hearts of the 

nurses, affecting them for years to come. In efforts to 

prevent ‘bad’ dying and deaths, it appears important 

to distinguish between factors that can be addressed 

by the health care system, e.g. deficient 

communication and severe symptoms, and those 

factors beyond our control, e.g. conflicts in the family. 

The study was funded by the Foundation for Hospice 

Care, Umeå, SE. 



IImplementing the Liverpool Care Pathway 

for the Dying Patient in the Community: 

Challenges Encountered and Solutions 

Provided 

Taminiau-Bloem E. 1 , Dekkers A. 2 , Zuylen van L. 3 , 

Schneider S. 4 

1 Comprehensive Cancer Centre Rotterdam, 

Rotterdam, Netherlands, 2 Comprehensive Cancer 



Centre Rotterdam, Palliative Care, Rotterdam, 


Center Rotterdam, Rotterdam, Netherlands, 4 Home 

Care Rotterdam, Rotterdam, Netherlands 

Aims: The Liverpool Care Pathway for the Dying 

Patient (LCP) is a multi-professional document, which 

guides healthcare professionals in providing high 

quality care for patients in the last hours and days of 

life. In the Netherlands, the LCP has been implemented 

into hospitals, nursing homes, hospices, and the 

community setting. However, actual use of the LCP in 

the community setting proves troublesome. Therefore, 

the aim of this study was to explore community nurses’ 

perceptions of the LCP, reasons for (not) using the LCP 

and educational needs.Design and methodsStructured 

questionnaires on community nurses’ perceptions and 

use of the LCP and educational needs are distributed 

amongst approximately 150 community nurses 

working for a large Home Care organisation in 

Rotterdam, the Netherlands. 

Results: Preliminary results based on data derived 

from 50 community nurses show that 42 nurses 

(84%) are familiar with and trained in using the LCP. 

Only twelve community nurses (24%) indicate to 

have used the LCP in the previous six months. On 

average community nurses rate the LCP’s 

comprehensibility a ‘7’, and consider its usefulness in 

providing patient care a ‘6’, using an evaluation scale 

ranging from 1-10. Thirty-six community nurses 

(72%) would like to use the LCP in the future. 

However, to become more skilled in using the LCP, a 

majority expresses a need to regularly discuss the LCP 

during team meetings, and for educational 

programmes on medical information about the dying 

process and on communication with the patient, 

family, and general practitioner about the LCP. 

Further results will be presented. 

Conclusion: This study increases our insight into the 

challenges encountered in implementing the LCP in 

the community. As such, our results will be of wider 

interest to health care professionals aiming to 

implement guidelines and care pathways in the 

community setting. Further suggestions to improve 

the implementation of the LCP in the community 

setting will be presented. 



What Do Terminally Ill Patients’ Oral 

Histories Tell Us about the Issues that Affect 

Treatment Choices in End of Life Care? 

Winslow M. 1 , Smith S. 1 , Noble B. 1 


Care, Sheffield, United Kingdom 

Introduction: At present most deaths in England 

occur in NHS hospitals. However research on patients’ 

preferences for place of death indicates that the 

majority would prefer to receive end of life care at 

home. Many factors may impact on choice of care 

setting at the end of life, but it is clear that during a 

patient’s terminal illness either patients or families 

preferences and expectations change to the extent 

that actual place of death does not reflect the apparent 

collective wish for end of life care at home. The 

interviews in our oral history archive are with people 

close to death and reveal issues and factors which 

determine end of life care choices. Qualitative analysis 

of the data will contribute new awareness to existing 

knowledge of how patients and families approach end 

of life. 

Aim: To determine what terminally ill patients’ oral 

histories can tell us about the issues that affect 

treatment choices in end of life care. 

Design and methods: This qualitative study will 

conduct secondary analysis of an extensive archive of 

interview data. It will entail detailed analysis of 100 

interviews with patients, collected from 2007 to the 

present. We will conduct a comprehensive systematic 

review of literature and qualitative data, approach 

analysis with modified grounded theory and use 

triangulation processes to assist in considering the 

data as a whole. 

Results: Analysis of data will identify issues 

important to patients as they approach the end of life. 

The study will shed light on personal and social 

factors that influence end of life choices. 

Conclusion: Secondary analysis of the oral history 

archive may facilitate improvement of services 

through broadening health care professionals 

awareness of patients´ feelings and needs as they 

approach death. Better understanding of the 

importance of place of death to patients and their 

carers may aid the development of appropriate 

training and support for professionals. 

105 


(Thursday)


(Thursday) 




The Experinces of Community Nurses 

Working with Terminally Ill Patients with 

Ethnic Minority Backgrounds 

Pedersen G. 1 

1 Lovisenberg Diakonale Sykehus, Hospice 

Lovisenberg, Oslo, Norway 

Research aims: The purpose of this survey was to 

give light to an area of nursing where little research is 

done, and increase knowledge and understanding 

concerning home care for terminally ill patients who 

are culturally different to the nurse. 

Study design: A qualitative approach was used, 6 

nurses were strategically chosen and semistructured 

qualitative interviews were conducted. Thematic 

analysis was used when analysing the data. 

Results/conclusion: The findings from the survey 

showed that the nurses found caring for terminally ill 

patients who are culturally different from them to be a 

demanding task. In analysing the texts 4 main topics 

emerged: 

1. Home care - knowledge of and use of services. The 

nurses 

experienced that patients with an ethnic minority 

background often have less knowledge of community 

care than ethnic Norwegian patients do, and that they 

to a lesser extent use the services available. Most 

ethnic minority patients seem to want to die in their 

own home. 

2. Communication. The nurses often experienced 

problems concerning 

communication, due to both language and cultural 

differences. If there was a need for translation, 

members of the family were often used, professional 

interpreters were seldom used. 

3. Cultural differences and differentness. Concerning 

experiences with cultural differences and 

differentness, the main topics were differences in 

approaching death and how death often is not talked 

about, and the nurses’ orientation towards 

individualism while the patient and his family have a 

collectivistic orientation. 

4. The nurse’s role in caring for patients with ethnic 

minority backgrounds. Regarding the last theme, the 

nurses found that their ‘role’ was often different when 

caring for this group of patients. The nurses felt an 

individual approach gave them the best chance to 

succeed in caring for ethnic minority patients, but 

they also saw the need for more teaching about and 

knowledge of other cultures and religions. 



Factors Associated with Prescription of Opioid 

Analgesics among Older Persons with 

Colorectal Cancer, in Two District Palliative 

Care Programs 

Fisher J. 1 , Johnston G. 2 , Urquhardt R. 3 

1 Dalhousie University, Halifax, NS, Canada, 

2 Dalhousie University, School of Health 

Administration, Halifax, NS, Canada, 3 Capital District 

Health Authority, Halifax, NS, Canada 

Background: Prescription of opioid analgesics is a 

key component of pain management among patients 

with terminal cancer. Access within the community 

to appropriate analgesics may impact whether 

patients remain in the community during the weeks 

prior to death. 

Aim: To examine factors associated with the use of 

opioids within the community among older persons 

with colorectal cancer during the 26 weeks prior to 

death. 

Methods: Data were derived from a retrospective 

cohort study of persons diagnosed with colorectal 

cancer from 2001-2005 in Nova Scotia, Canada. This 

cohort was anonymously linked to 14 large 

administrative databases. The study population 

included persons age 66+ who died from 2001-2008, 

in two health districts with established palliative care 

programs (n=657). Factors associated with at least one 

community-acquired opioid prescription were 

examined using multivariate logistic regression. 

Results: Adjusting for all covariates, male sex (OR: 

0.59); age (years) at death (OR: 0.97); diagnosis less 

than 26 weeks prior to death (OR: 0.62); and inhospital 

death (OR: 0.34) were negatively associated 

with a community-acquired opioid prescription. 

Long-term care residence (OR: 2.2); colorectal cancer 

as the cause of death (OR: 1.8); and referral to a 

palliative care program (OR: 3.2) were positively 

associated with a community-acquired opioid 

prescription. 

Conclusions: The strong positive association 

between referral to a palliative care program and the 

likelihood of an opioid prescription highlights the 

importance of these programs. The results raise 

concerns regarding the potential for unmet need 

among certain populations. Source of funding: 

Canadian Institutes of Health Research. 



Nurse Personal Growth in Hospital and 

Palliative Care Units 



2 University Hospital Lisbon North, Department of 

Liaison Psychiatry, Lisboa, Portugal 

The daily contact with death and loss can determine 

stress and burnout in nurses or it can be also an 

opportunity of personal and professional growth. 

Our aim is to evaluate the impact of different socioprofessional 

variables in the level of personal growth 

in nurses working in different hospital settings as 

compared with those working in palliative units. 


hospital and palliative care units ( 86.8% female; 

mean age 30.3; mean years of work experience 7.67) 

were assessed by a socio-professional questionnaire, 

the Portuguese validated version of the sub-scale of 

personal growth of the Hogan Grief Reaction 

Checklist ( HGRC), the DAP-R and the PIL. 

Results: We found significant higher personal 

growth score escape acceptance (p< .01) in nurses 

with a daily exposition to death and no significant 

differences with socio-demographic and nurse 

training variables except for married nurses exhibiting 

an higher personal growth (p< .02). There was a 

significant higher level of personal growth in 

palliative care nurses compared with oncologic 

departments. 

The religious acceptance dimension of the DAP-R (p< 

.002) and PIL (life purpose profile) total score (p< .0001) 

were also highly correlated with personal growth 

Conclusions: We show a strong relation between life 

purpose, religious acceptance and personal conclude 

mainly in palliative care units. 



Retrospective Study of Pharmacological 

Treatment and Administration Routes in the 

Last Days of Life in a Palliative Care Unit 

de Santiago A. 1 , Puerta M.D. 1 , Casado N. 1 , Chacon E. 1 , 

Torres E. 1 

1 Hospital Centro de Cuidados Laguna, Madrid, Spain 

Aim: To describe the most common drugs and 

administration routes used for symptom control in the 

three last days of life in an inpatient palliative care unit. 

Method: We studied retrospectively the data of 

patients who died in the inpatient palliative unit 

during a 3 month period. We collected following 

information from medical charts: demographic 

characteristics, drugs and administration routes used 

the day of death (DD) and 3 days before (3DB), and 

the presence of an explicit diagnosis of last days in the 

medical chart. All patients who died from 1 st of 

January to 31 st of March 2010 in the inpatient 

palliative unit were included, and those patients that 

came to the inpatient unit less than three days before 

dying were excluded. SPSS version 15.0 was used for 

statistical analysis. 

Results: 69 patients died in the period of study, and 6 

patients were excluded because they came to the 

inpatient unit less than three days before dying. 63 

patients were included, 62% male, median age was 

73(65-82) years. Most common tumors were 

gastrointestinal (41%), genitourinary (19%) and lung 

(13%). The median of administered drugs decreased 

significantly within the last 3 days from 8 (6-11) 3DB 

to 6 (4-9) the DD (p< 0,001); patients on opioids 

increased significantly from 57% 3DB to 86% DD (p< 

0,001), on benzodiazepines from 36% 3DB to 51% DD 

(p=0,007), on hyoscine from 36 % 3DB to 51% DD (p< 

0,002), on first step analgesics/antipyretics from 63% 

3DB to 54% D; patients on neuroleptics increased no 

significantly from 76% 3DB to 79% DD; and 

decreased significantly the patients on steroids, 

proton pump inhibitors and antibiotics. There were 

no significant changes in hydration. Subcutaneous is 

the most common route 3DB (87%) and DD (100%). 

An explicit diagnosis of last days of life was present in 

medical chart in 81% of patients. 

Conclusions: Is important to recognize the last days 

of life in order to adjust treatments and routes of 

administration to provide the best comfort to 

patients. 


Withdrawn 



A Community Services Experience of 

Improving End of Life Care in the Care Home 


Cook S. 1 , Perry F. 1 

1 Middlesbrough, Redcar & Cleveland Community 

Services, Guisborough, United Kingdom 

Background: Deaths within the acute sector were 

higher than other local areas, contributing to this 

were inappropriate admissions of care home residents 

to the acute sector at the end of life. 

Aim: A Macmillan Clinical Nurse Specialist for Care 

Homes was appointed with objectives to reduce 

inappropriate hospital admissions, reduce length of 

stay in hospital, and introduce Advance Care 

Planning in line with National Strategies. 

Method: Focus groups established for patients, staff 

and carers. Care Homes supported to sign up to the 

National Framework Programmes. Educational 

developments included a University module 

pertaining to end of life care in the care home setting 

and a website for further resources. 

Results: Initial results, an increase from 0% to 88% of 

patients being offered an Advance Care Plan within 

homes registered with the National Programme. An 

increase from 63% to 82% of patients are having their 

Preferred Place of Care recorded, an increase from 

71% to 89% of patients are dying in their Preferred 

Place of Care. The results support the reduction of 

inappropriate hospital admissions. 

Sustainability: September 2010: a further 16 care 

homes registered with the National Programme. The 

University module has been commissioned and 

running at capacity for a further two years. Care 

Homes are incorporating end of life training into new 

staff induction to ensure continuity of high quality 

care. Monthly focus group meetings continue to 

maintain enthusiasm and ongoing participation. The 

website links the care homes together in order to share 

good practice and provide support. 

Conclusion: The creation of a Clinical Nurse 

Specialist role to support care homes in implementing 

end of life care initiatives and developing appropriate 

education has been successful in improving 

confidence and care standards in local care homes. 

This has resulted in improved communication of 

residents wishes, reductions in acute hospital 

admissions and improved end of life care. 



Clinical and Marketing Teams Working in 

Partnership to Improve Access to Services 

through Profile Raising and Enhanced 

Information Giving 

Sutherland J. 1 , Frame J. 1 

1Saint Francis Hospice, Havering-atte-Bower, United 


It has long since been acknowledged that improving 

access to palliative care is dependant on improving 

understanding of hospices and the services they 

provide. Research has repeatedly shown that many 

people are fearful of hospices and wish never to need 

their services. In 2008 our marketing team carried out 

a consultation exercise to gain an understanding of 

the challenges we faced in ensuring timely access for 

all adults in our locality who have a life-limiting, 

progressive or advanced illness. 

A range of consultation methods, including key 

stakeholder focus groups and over 300 one-to-one 

interviews with the general public, meant that over 400 

local people, service users and providers were asked 

their views about the hospice and its services. Results 

indicated there were significant barriers to accessing 

services; that many did not understand the services on 

offer nor who could use them; and that there was a real 

need for literature that communicates clearly the work 

of the hospice and the range of services it provides. 

Since rebranding in 2009 our marketing and clinical 


teams have worked in partnership to raise the profile of 

our hospice through an extensive range of initiatives. 

We have also produced a comprehensive range of 

service information leaflets and clinical literature and 

have been highly successful in developing networks 

and collaborative working relationships with 

colleagues in non-cancer specialities. 

We have been able to achieve far more combining our 

marketing and clinical expertise than we could have 

achieved singularly. Our joint working and skill 

sharing has taken us to a new and better place and we 

are beginning to see a steady increase in referrals to all 

services. Some two years on we are beginning to see the 

results of our partnership working and evidence that 

we have been successful in improving access to those 

people not previously accessing our services well. 



Free Legal Aid for Palliative Care Patients in 

Georgia 

Kiknadze N. 1,2 , Ezer T. 1,2 , Hepford K. 1,2 

1 Open Society Institute, Tbilisi, Georgia, 2 Open 

Society Institute, Public Health Department, New 


Palliative care aims to improve the quality of life 

for patients and families facing life-threatening 

diseases by relieving pain and suffering through 

physical, psychosocial, and spiritual care. Dealing 

with legal issues that arise is a natural part of this 

holistic approach. Palliative care patients often face 

complicated legal questions related to the disposition 

of property, planning for children, and accessing 

social benefits. 

The Open Society Foundations set out to investigate 

the possibility of linking hospices in Georgia with 

legal partners to meet these needs. 

Design: In October 2008, the Open Society 

Foundation held an introductory session on palliative 

care for legal groups. Kordzadze Law Office 

immediately expressed interest, and every week, 

Korzadze lawyers visit the hospices and are on call to 

meet with patients. 

In 2009, the Open Society Foundations organized a 

public launch of the initiative to interest additional 

law offices. At the launch, a documentary film 

highlighted the dramatic case of one of the first 

patients benefiting from the program. Through 

Korzadze’s assistance, this cancer patient was reunited 

with her husband, who was serving a prison sentence, 

four days before her death. After the launch, two 

additional law firms volunteered to provide free legal 

services to palliative care patients. 

Results: Currently, three law firms have partnered 

with the hospices in Georgia to provide patients with 

comprehensive care, which addresses legal needs. 

Twenty-five patients have had legal issues successfully 

resolved through this project. The lawyers have further 

expanded beyond helping individual patients to 

working with the hospices on their legal matters, such 

as cooperation agreements with insurance companies. 

Conclusion: Partnerships between law firms and 

hospices to provide free legal assistance to palliative 

care patients are feasible, enabling more holistic care 

and improving patients’ quality of life. 



Roles and Gender Differences in Percepcion of 

Death 

Garcia Navarro E.B. 1,2 , Garcia Navarro S. 2,3 , Perez Espina 

R. 4 , Ortega Galan A. 2,5 , Araujo Franco M. 6 , Diaz Santos M. 6 

1 Hospital Juan Ramon Jimenez, Unidad de Sueño, 

Huelva, Spain, 2 Universidad de Huelva, 

Departamento de Enfermeria, Huelva, Spain, 3 Distrito 

Sanitario Huelva-Costa, Palliative Care Coordinator, 

Huelva, Spain, 4 Hospital Vazquez Diaz, Unidad de 

Cuidados Paliativos, Huelva, Spain, 5 Hospital Juan 

Ramon Jimenez, Hospital de Dia, Huelva, Spain, 

6 Fellow Research Project: The End of Life. Perception 

of Stakeholders, Huelva, Spain 

Introduction: Comprehensive care to ill patients 

and their relatives given by health professionals 

implies a complete knowledge of terminal illness and 

its emotional, social and spiritual impact that it has in 

all actors involved in the process. The perception of 

the main actors becomes highly important in 

planning the end of lives cares.This research wants to 

show real needs raised by patients in their disease 

process as well as differences with regard to the gender 

or culture of human beings under study. (Project 

funded by Andalusian government. PI 0204/2008) 

General target: Knowing and understanding the 

perception of terminally ill patientsSpecific target: 

Identify the needs of those people and the influence 

of gender on the perception in the final stretch of 

their process. 

Resources and method: Qualitative methodology. 

Descriptive design of phenomenological design. The 

number of the interviews made is subject to a 

saturation of the speech posed. The inclusion criteria 

applied are: -Take part in the study voluntarily -Be 

included in the Palliative cares program at home. 

Results/conclusions: Resulting categories from 

literal speeches of participants.As in the way of life, 

men and women perceive the end of it differently. 

Women are also more emotional in the final stretch of 

life worrying more about family experiences in the 

process than her feelings. In order to familiar 

planning, men are mainly concerned about economic 

situation while women worry about emotional state 

of the family. The expression of feelings promotes the 

release of anxiety at the time of death. All of that is 

influenced by gender because of men are less 

expressive than women. However the conspiracy of 

silence in families is the great evil of terminal diseases 

and that is not influenced by gender. 



The Hospital Environment for End-of-Life 

Care of Older Adults & their Families: A 


Brereton L.M. 1 , Gardiner C. 2 , Ingleton C. 2 , Barnes S. 3 , Gott 

M. 4 , Carroll C. 5 

1 University of Nottingham, Division of Nursing, 

Midwifery & Physiotherapy, Lincoln, United Kingdom, 

2 University of Sheffield, School of Nursing & 

Midwifery, Sheffield, United Kingdom, 3 University of 

Sheffield, ScHARR, Section of Public Health, Sheffield, 

United Kingdom, 4 The University of Auckland, School 

of Nursing, Auckland, New Zealand, 5 University of 

Sheffield, ScHARR, Health Economics and Decision 

Science (HEDS), Sheffield, United Kingdom 

Aims: Globally ageing populations & increases in 

chronic illness mean more patients will need 

palliative care towards the end of life in future. 

Despite policy initiatives in England to increase endof-life 

care in the community, older adults may prefer, 

& many will require, in-patient hospital care at the 

end of life. Providing appropriate environments for 

older adults needing end-of-life care is important, 

especially given concerns about hospital 

environments for this group. This study aims to 

identify the optimum physical hospital environment 

for end-of-life care of older adults & their families. 

Method: A systematic review of the literature was 

completed. Thirteen electronic databases were 

searched. Reference & citation tracking was 

performed on included papers. Inclusion criteria were: 

papers written in English focusing on the physical 

hospital environment for older adults & their families 

requiring palliative/end-of-life care. Two reviewers 

independently screened titles & abstracts & 

completed data extraction. Study quality was assessed 

using Critical Appraisal Skills Programme tools or the 

Joanna Briggs Institute NOTARI tool. 

Results: Of the 138 papers initially identified, 7 met 

the inclusion criteria. 3 more were found. Four themes 

emerged; privacy as needed; proximity (physically & 

emotionally to loved ones, home & nature); 

satisfaction with physical environment including 

hospital location, size, accessibility, cleanliness & 

homeliness: deficiencies in physical environment 

including noise, hazards, poor signposting, lack of 

waiting room space & telephone access. 

Conclusion: Little evidence exists about optimum 

physical environments for the end-oflife care of 

older adults & their families. Evidence suggests that 

physical hospital environments have an important 

impact on satisfaction & quality end-of-life care. 

Further research is required to identify and evaluate 

features of an optimum physical environment for the 

end-of-life care of older people. 



Dying with Comfort at the End of Life - Are We 

Meeting the Goals? 


M.D.A. 1 

1 School of Health Sciences Polytechnic Institute of 

Leiria, Health Research Unit, Leiria, Portugal, 




3 Hospital de Pulido Valente, Lisboa, Portugal 

Introduction: Comfort in one of the main goals of 

patients’ care at the end-of-life. It is an immediate 

experience of being strengthened by having the needs 

for relive, ease and transcendence met in physical, 

psycho spiritual, social, and environmental contexts 

(Kolcaba, 2003). It is unclear whether patients are 

comfortable while receiving palliative care, neither 

the relationship between patient comfort, clinical 

variables and family support. 

Aims: To characterize the comfort of patients in 

palliative care; to correlate patients’ comfort with 

pain, fatigue and family support. 

Design/method: This correlational study used a 

socio demographic / clinical questionnaire- numeric 

scale (0-10) to access pain intensity, fatigue and family 

support; HCQ - PT consist of 3 subscales measuring 

types of comfort (1-6): relief - state of having specific 

need met, ease - state of calm / contentment, 

transcendence - state in which one can rise above pain 

or problems. We applied it to a convenience sample of 

126 patients, 57,1% males, mean age of 66,97 years 

(SD=11,9), assisted by Portuguese palliative care teams 

for a mean of 18,4 weeks (SD=34,8). 34,1% reported 

pain (M=1,7; SD=2,8) and 62,7% fatigue (M=3,7; 

SD=3,4). Most patients (97,6%) felt family support. 

Results: Patients experiment all types of comfort. 

Relief is the one with better levels of comfort (M=4,8; 

SD=,7); Ease (M=4,7; SD=,7) and the lowest level of 

comfort was obtained in Transcendence (M=4,6; 

SD=1,0). Fatigue intensity is negative correlated with 

Ease (p< ,05) and Transcendence (p< ,001). Time of 

palliative intervention were positive correlated with 

Ease (p< ,05) and Transcendence (p< ,01). 

Conclusion: In spite of being at the end-of-life, 

patients are comfortable. The higher the fatigue, less 

ease and transcendence were felt by patients. Results 

suggested interventions over time addressed to 

improve patients’ state of calm and their ability to rise 

above their problems facing end-of-life with advanced 

illness. 



Management of Co-morbid Conditions at the 

End of Life: A Review of Existing Prescribing 

Guidelines, and an Examination of Current 

Practice in the Acute Hospital and 

Community Settings 

McLean S. 1 , Hussain I. 1 , Sheehy-Skeffington B. 1 , Bramwell 

M. 1 , O’Brannagain D. 1 , O’Gorman A. 1 

1 Our Lady of Lourdes Hospital, Drogheda, 

Department of Palliative Medicine, Drogheda, Ireland 

Background: Comorbid conditions - commonly 

cardiovascular diseases and diabetes mellitus - are 

present in over half of patients over the age of 50 

diagnosed with cancer. There is increasing 

recognition that comorbidities should be managed 

differently towards the end of life but optimal 

prescribing is unclear due to lack of evidence on how 

to minimize adverse drug reactions and interactions, 

and healthcare costs, while appropriately managing 

comorbidities at the end of life. 

Method: A systematic review of the literature was 

performed using MEDLINE (1950 - October 2010), 

using search terms: ‘palliative’, ‘prescribing’, 

‘comorbidities’, ‘end of life’, ‘cardiovascular’ and 

‘diabetes’ and the Boolean operators ‘OR’ and ‘AND.’ 

Descriptive articles and commentaries were included, 

however correspondence was excluded. Secondly, all 

patients who were referred to the palliative care 

service in our region, and who died between 1/7/2010 

and 31/8/2010, were identified. A retrospective review 

of prescribing, and of documentation of prescribing 

decisions, was performed using a chart review tool 

created specifically for this purpose. 

Results: 437 potentially relevant articles were 

identified, and a search of bibliographies identified a 

further 14 articles. Abstracts were independently 

reviewed by two authors and assessed for suitability 

for inclusion. 21 relevant articles were then reviewed 

and data were extracted using a pre-prepared 

proforma. 50 patients who fulfilled the study criteria 

were identified, in the acute hospital and community 

settings. Data are currently being analysed. 

Conclusions: No consensus guidelines currently exist 

in the literature regarding prescribing for comorbidities 

towards the end of life, although several models and 

frameworks to guide decision making have been 

proposed. Preliminary results of the review of current 

practice indicate a high prevalence of polypharmacy, 

and an ad hoc approach to discontinuing medications 

for comorbidities at the end of life. 

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“Diagnosing Dying” Delphi: Regional Testing 

Latten R.J. 1 , Williams E.M.I. 2 , Ellershaw J.E. 1 

1 Marie Curie Palliative Care Institute, University of 

Liverpool, Liverpool, United Kingdom, 2 University of 

Liverpool, Division of Public Health, Liverpool, 


Background: Recognising when patients are in the 

last hours or days of life is an important part of 

providing good care of the dying, including the use of 

End of Life care pathways, such as the Liverpool Care 

Pathway for the dying patient. However there is little 

evidence about how the dying phase is identified by 

healthcare staff. Earlier qualitative research exploring 

how hospice staff recognise the last days of life has 

given insight into factors staff appear to consider 

important. 

Aim: To check accuracy and gain consensus on 

emergent themes in diagnosing dying from the 

qualitative research. 

Method: Multi-disciplinary staff from the 2 hospices 

participating in the earlier qualitative research were 

asked to participate in a Delphi study designed 

around the qualitative themes. Web based survey 

design was used alongside traditional paper 

questionnaires. Participant experience in end of life 

care was established in combination with opinion 

and comment on questions/statements derived from 

the qualitative themes. Participants gave opinion on a 

range of factors including physical signs & symptoms, 

patient appearance and actions, functional status, the 

role of investigations and influence of depth of 

relationship with patients. 

Results: 34 hospice staff participated. 64.5% had 

over 10 years experience in their speciality. Breathing 

changes, reduced conscious state and level of fatigue 

were strongly ranked by staff as important in 

recognising dying. Patient actions, such as 

psychological withdrawal, agitation and statements 

on their own health were also rated highly. There was 

a range of opinion on the role of investigations. A 

strong relationship with patients was considered 

valuable to recognise changes in patient condition 

through the deterioration process. 

Conclusion: This stage of the Delphi process has 

helped confirm and clarify themes interpreted from 

the qualitative research. Further Delphi rounds are in 

progress seeking wider consensus on a national level. 



Exploring the Practice and Experiences of UK 

Ambulance Clinicians Attending Patients 

who Are at End of Life: An Interview Study 

Bronnert R. 1 , Munday D. 1 , Gakhal S. 1 , Pettifer A. 2 

1 University of Warwick, Warwick Medical School, 

Coventry, United Kingdom, 2 Coventry University, 

Coventry, United Kingdom 

Aims: Ambulance clinicians attend patients who are 

terminally ill in the community as emergencies or 

when transporting them between different care 

settings. Little is known about their practice or 

experiences in these situations. This study aimed to 

explore in detail ambulance clinicians’ practice, 

experiences and views about managing patients who 

they perceive to be at the end of life. 

Method: Semi structured telephone interviews were 

carried out with 10 ambulance clinicians from a 

regional ambulance trust, purposively sampled from 

responders to a questionnaire about end of life care. 

Verbatim transcripts were analysed and coded 

thematically. 

Results: Participants descriptions of the complexities 

of their work and decision-making emerged into the 

following categories: 

Delivering care - challenges: deciding if a patient 

is terminal, managing family responses, lack of access 

to skilled help, lack of support, discrepancy between 

protocols and what the clinician considers morally 

right. 

Delivering care - solutions: accessing advice from 

other professionals, support from other clinicians, 

support from ambulance control, documentation in 

the patients’ home. 

Importance of education: reporting lack of 

education, recognising the need for 

training/education, varying preferences for 

educational styles. 

Policies: encourage good practice, protect patient, 

support decision making, protect clinicians from 

litigation but lack flexibility, lack of “fit” between 

policy and ethical practice, conflict with other 

policies. 

Conclusions: Ambulance clinicians encounter 

complex practical and ethical challenges when 

attending patients at the end of life. They can also 

identify potential solutions to these dilemmas. 

Further work is necessary to fully understand their 

needs and experiences and develop strategies to 

address their difficulties. The results of this study have 

informed an education project and further work is 

planned. 



Dignified Death for Chidren in Palliative 

Care: Nurses’ Percetions from an Oncology 

Unit 

Misko M.D. 1 , Souza L.F. 1 , Bousso R.S. 1 , NIPPEL: 

Interdisciplinary Research Group on Loss and Grief 

1 University of Sao Paulo, School of Nursing, São 

Paulo, Brazil 

Objective: To explore the concept of dignified death 

for child in palliative care from the perspective of 

nurses in pediatric oncology. 

Methods: We used the Symbolic Interaction and 

narrative research as theoretical and methodological 

reference. Data were collected with twenty nurses in 

pediatric oncology unit of a public hospital in Sao 

Paulo, through semi-structured interviews. 

Results: The data analysis allowed the identification 

of five elements: Autonomy; Family Care; Humanized 

Care; To offer physical comfort and Working with and 

in the process of dying. 

Conclusions: This study helps to extend the 

understanding of this process of care and to advance 

in the postulation of a theoretical framework that 

includes the integration of knowledge and actions 

that constitute an integral care, transcending the 

attendance of clinical and biological needs. 



Transitions of Decision Making; Families´, 

Patients´ and Health Professionals’ Decision 

Making over Time in the Last Six Months of 

Life in Greece 

Anagnostou D. 1 , Wiseman T. 2 , Higginson I. 1 


Palliative Care, Policy and Rehabilitation, School of 

Medicine, London, United Kingdom, 2 King’s College 

London, Florence Nightingale, School of Nursing and 

Midwifery, London, United Kingdom 

Aim: Although it is recognised that patients 

experience transitions during their last months of life; 

little attention has been given to the transitions of 

decision-making of care during this time. This study 

explored the decision-making of care as developed 

and changed over time from the, families’, patients’ 

and health professionals’ perspective. 

Methods: A prospective, longitudinal qualitative 

approach was adopted, employing ethnography as its 

methodological framework. 90 participants (14 

patients with advanced cancer, 32 family members 

and 42 health professionals) were followed over a 

period of 18 months, while being observed and 

interviewed every time the patients were coming in 

contact with the health services. 

Results: Mostly doctors and families had the role of 

decision making of the patient’s care. Doctors based 

their decisions of care on the goals of curing or 

extending life until the end. Families adjusted their 

goals of decision-making while vacillating between 

their role as part of the health care team and as part of 

the patient’s family. Patients’ focus was more on 

surviving the relationship with the loved ones, and 

thus their decisions were supportive of their families’ 

wishes. Only near the end, they fought for preparing 

to die and performed dying rituals. The main carer’s 

attitude and family’s beliefs, the patient’s role in the 

family, the illness progress, but also the doctor’s 

attitude were some of the factors which influenced 

the changes of decision-making and its speed from 

stage to stage. 

Conclusion: Our findings suggest that decision 

making of care in Greece is mostly influenced by the 

doctors and families. It follows not only patients’ 

trajectories but also families’ trajectories and 

transitions. These aspects should be taken into 

consideration when planning for palliative care 

services in Greece. 



A Tale of 3 Cities: A Comparison of Palliative 

Care in London, Dublin and New York 

Higginson I.J. 1 , Meier D. 2 , Morrison R.S. 2 , Goh G. 1 , 

Normand C. 3 , Lawlor P. 4 , McCrone P. 5 



Kingdom, 2 Mount Sinai School of Medicine, New 

York City, NY, United States, 3 University of Dublin, 

Trinity College, Centre of Health Policy and 

Management, Dublin, Ireland, 4 University of Ottawa, 

Division of Palliative Care, Ottawa, ON, Canada, 

5 King’s College London, Institute of Psychiatry, 


Aim: Hospice and palliative care have expanded 

across the globe to meet the needs of seriously ill 

patients and their families, but are adopted in 

different forms in these countries, with little 

comparison. This analysis aimed to compare the 

development and provision of palliative care in three 

major cities. 

Methods: Analysis of published and grey literature, 

informal interviews with key stakeholders in each 

country, conference calls bringing together the 

experts in the development and provision of 

palliative care in three cities. Data entered into a 

matrix to contrast the goals, process and outcomes of 


Findings: While each country has developed a 

palliative care unique to its health system, elements 

such as the philosophy, goals and approach are 

common. However, there are major differences in 

access to care, especially by diagnosis and period of 

time in care, funding models, the extent to which care 

is advisory or a direct provision and the focus on 

home care. 

Conclusions: While the palliative care and hospice 

started from a common base they have evolved 

separately and now have many different 

interpretations in the three cities. What a patient or 

family receives in palliative and hospice care is now 

different in the three cities, suggesting that greater 

international comparison and consensus is needed. 



Developing a Primary Care Care Pathway for 

the End-of-Life (ZPNL) 

Waerenburgh C. 1,2 , Streffer M.-L. 1 , Van den Eynden B. 3,4 

1 2 University of Antwerp, Antwerp, Belgium, Netwerk 

Palliatieve Zorg Noord-West-Vlaanderen, Bruges, 

Belgium, 3Universtiy of Antwerp, Antwerp, Belgium, 

4Centre for Palliative Care, GZA, Wilrijk-Antwerp, 

Belgium 

Background: All over the world a number of 

guidelines are helping caregivers in tackling the many 

challenges while caring for palliative patients. These 

guidelines are seldom brought together in a 

comprehensive, interdisciplinary care pathway for a 

palliative patient. The ‘Liverpool Care Pathway’ is 

only applicable during the dying phase of the patient. 

Aim: This project supported by the Flemish 

Government, wants to develop and to implement a 

palliative care pathway as an instrument that 

facilitates the delivery of good palliative primary care. 

It should become at the same time a care dossier, a 

checklist as well as an evaluation tool. It intends to be 

an aid for good quality of care, for good 

communication with patient and his family, and for 

good cooperation between caregivers. The main goal 

of the developing of a primary care pathway for endof-life 

care (ZNPL) is to offer patients with a limited 

life prognosis in time the appropriate care they need 

by a professional and multidisciplinary team. 

Methodology: The Care Pathway for the Nearing 

End-of-Life (ZPNL) has been developed by a university 

research group, following a strict methodology. 

Different levels of working groups provided feedback, 

assuring a narrow cooperation with the primary care 

working field. 

Results: This palliative care pathway has been 

designed by means of a flowchart and a care dossier; 

an accompanying manual will also be available for 

the caregiver. 

The patients will be included by their general 

practitioner on the basis of the Surprise Question (SQ) 

and the Palliative Performance Scale (PPSv2). All 

patients , regardless of the kind of diagnosis, but 

having a prognosis of less than one year, should be 

included. 

Conclusions: The Care Pathway for the Nearing 


End-of-Life will allow well-structured but nevertheless 

individualized palliative-care-to-measure applicable 

earlier during the illness course of the patient. In 2011 

the implementation of this care pathway will start. 



Have We Got it Right? Pharmacological 

Treatment in the Last Days of Life in 

Oncological Patients 

Álvarez B. 1 , Elizalde M.A. 1 , Brazo L. 1 , Puigbó D. 1 

1 Serveis de Salut Integrats del Baix Empordà, Palamós 

Gent Gran, Palamós, Spain 

Objective: To review the pharmacological treatment 

of oncological patients during the last days of life. 

Method: We revised the clinical histories of 

oncological patients who died in a palliative care unit 

between 1.1 - 31.8.2010. 

Parameters analyzed: age, sex, oncological diagnosis, 

factors precipitating admission, procedence and 

medication. In admissions lasting over 1 week, 

pharmacological data was taken from the last 7 days. 

Results: Of 89 patients, 45 were admitted from an 

acute hospital ward, 8 from A&E and 36 from home. 

The most frequent pathologies were: lung (22), colon 

(14) and breast (7) cancers. The causes of admission 

were: dyspnoea (with or without respiratory infection, 

9 and 20 respectively), agonic phase (20), liver failure 

(12), uncontrolled pain (10) and intestinal 

obstruction (8), other (10). 

In those admitted ≥6 days (41 patients), 81% were 

treated with > 10 drugs, while in those admitted 1-5 

days (48 patients), 58% received ≤10 drugs. 

In 76% of patients admitted for dyspnoea, over 10 

drugs were used. In over 50% admissions of ≥6 days, 

>10 drugs were being employed 48 hours before 

death. In those admitted for agonic phase, the mean 

number of drugs used (5, range 3-8) was inferior than 

in the groups of patients admitted for other causes. 

Conclusions: Dyspnoea often precipitates admission 

in terminal oncological patients. It is difficult to 

decide whether to treat these more actively 

(antibiotics, steroids, bronchodilators, etc), which 

may explain the greater number of drugs used, or only 

for symptom control. 

If admission is prolonged, it is difficult to decide at 

which moment to withdraw medication not strictly 

necessary for symptom control. 

In the agonic phase the number of drugs employed is 

usually reduced. 

We believe that recently approved local guidelines 

and trying to priorize symptom control may both 

help a better pharmacological management of these 

patients. 


Withdrawn 



The Needs and Experiences of LGBT Patients 

and Carers at the End of Life: A Systematic 

Review of the Evidence 

Epiphaniou E. 1 , Harding R. 1 , Chidgey-Clark J. 2 


Care Policy and Rehabilitation, London, United 

Kingdom, 2 Guy’s & St Thomas’ Hospital NHS Trust, 


Background: Palliative care has set an agenda to 

reduce social exclusion and to provide palliative care 

according to need. It is unclear how best to meet the 

needs of Lesbian, Gay, Bisexual and Transgender 

(LGBT) patients and their families. 

Method: Search strategy as follows: Medline (1950present), 

PsycInfo (1806-2010), Cinahl (1982-2010) 

and ASSIA (1987-2010) were searched for primary 

data on LGBT and palliative end of life care. 

Results: Out of 4483 articles screened, 133 were 

examined. Final sample consisted of 22 papers. Most 

were conducted in the US, and majority focused on 

gay and lesbian individuals and cancer care. 

Furthermore, most studies discuss the issue of 

‘assumed heterosexism’ which impedes LGBT to receive 

information and treatment options relevant to them. 

Discussion: There is a paucity of data on the needs, 

experiences, preferences and views of LGBT and end 

of life care and more specifically on bisexual and 

transgender population. Results also highlight that 

professionals need to be knowledgeable about the 

LGBT needs and preferences during the consultation 

and thus ask about their sexuality so that relevant 

information and appropriate person-centred patient 

and family care is provided. 

Conclusion: There is a significant need to examine 

the LGBT views and experiences in end of life care and 

also train and educate professionals to improve 

communication skills and be better able to recognise 

sexual diversities. 



The Factors Influencing the Formulation of 

Clinical Prediction of Survival in Advanced 

Cancer Patients - An Exploratory Qualitative 

Study 

Thirukkumaran T. 1,2 , Thorns A. 2,3 

1 Pilgrims Hospices in the East Kent, Ashford, United 

Kingdom, 2 University of Kent, Canterbury, United 

Kingdom, 3 Pilgrims Hospices in the East Kent, 

Margate, United Kingdom 

Formulating survival prediction is one of the cardinal 

clinical skills for a clinician and is, unfortunately, a 

poorly developed skill in modern medicine. Clinical 

prediction of survival (CPS) is found to be an 

independent predictor from the literature but subject 

to a series of limitations. The accuracy of prediction in 

advanced cancer has been studied extensively for 40 

years. However, there is only a little evidence available 

to find out how physicians formulate their 

predictions and what factors they base their 

predictions on. 

Aim: This study aimed to identify the factors used to 

formulate the CPS in advanced cancer patients by 

interviewing experienced palliative physicians and to 

generate a useful hypothesis to show how CPS was 

arrived at. 

Methodology: A prospective qualitative study with 

semi-structured interviews of experienced palliative 

physicians performed through ‘purposeful random 

sampling’ strategy. Sample size (n = 10) was calculated 

by achieving the ‘saturation point’. 

Results: The rate of change in a patients’ symptom 

profile, functional status, observations over a period, 

physician’s own assessment, specific diagnosis, extent 

of disease, response to treatment were identified as the 

relevant information for CPS. The blood indices are 

usually not taken into consideration for prediction 

but the rate of changes in the general results could 

give an overview of the current disease status and 

specific tests like increasing tumour makers in spite of 

treatment and resistant hypercalcaemia could help in 

the estimation. Participants also felt some correlation 

with psychosocial, emotional wellbeing and CPS. It 

was also identified that to improve skills in CPS, 

regular practice with feedback would be required. 

Conclusion: This study identified the factors used by 

palliative physicians to formulate their prediction. 

Formulation of a detailed flowchart of CPS could be 

made from these factors and their clinical usefulness 

would be tested by further studies. 



End-of-Life Care for the Ageing in China: 

Status Quo and Prospect 

Ma K. 1,2 , Chen H. 3 

1The 3rd People’s Hospital of Kunming, Kunming 

Palliative Care Center, Kunming, China, 2Chinese Association for Life Care, Chinese Hospice and 

Geriatric Care Professional Council, Beijing, China, 

3The Open University, Milton Keynes, United 


Although, since the early 1980s, measures have been 

taken to introduce formal end-of-life care into China 

currently it only has localized and patchy provision, 

which lags far behind the growing needs of a rapidly 

aging and prevalently ailing population; the 

diminished size of families and a shrinking pool of 

informal carers. Existing models of service delivery are 

predominantly immature and partial. Major issues 

include a lack of concepts integrated and rooted in 

policies; the lack of an established specialism; 

unstandardized and unregulated practice, and the 

lack of a clear message to the public. This presentation 

will first introduce the status quo of end-of-life care 

provision in China, and then examine the major 

issues from the perspective of Chinese culture, policy, 

legislation, the health care system and subspecialty 

establishment. 

Despite the challenges, opportunities exist for 



developing unique models of end-of-life care that 

conform to the current situation in China. I will 

present lessons from a handful of good practices, such 

as the hospices established by the Li Ka Shing 

Foundation that provide home-based and free 

hospice care to poor patients and some inpatient 

palliative care departments in high-level polyclinics 

that provide relatively comprehensive palliative care. 

The Chinese Association for Life Care (CALC) was set 

up in 2006 to advance end-of-life care in China and to 

act as a nationwide regulator in the field. The current 

work of CALC in placing end-of-life care on the 

government’s health agenda, establishing the 

subspecialty, and standardizing and regulating the 

practice will be presented. 



Spirituality and Palliative Care 

Barbosa A. 1 

1 Lisbon School of Medicine, Palliative Care 

Unit/Bioethics Centre, Lisboa, Portugal 

There is a growing amount of research on spirituality 

in medicine and particularly in palliative/end-of-life 

care. The objective of this study is to identify the main 

dimensions of the construct of spirituality. 

344 publications presenting empirical and theoretical 

research were systematically researched in Medline 

under the keywords “spirituality” and “palliative 

care”. Other publications were identified by 

unsystematic data integrating reference lists and 

manual chapters. 

235 publications either qualitative or quantitative 

studies were identified and critically reviewed. The 

focus of this study lies on searching the main 

dimensions of spirituality that could be useful for the 

clinical practice and research. 

The thematic analysis was centered on conceptual 

dimensions of spirituality. Ten themes emerged from 

the content analysis: 

1) transcendence, 

2) purpose and meaning, 

3) communion and belonging, 

4) reconciliation, 

5) plenitude, 

6) serenity and comfort, 

7) hope, 

8) awareness, 

9) connection, 

10) restoration. 

We established four main dimensions integrating 

these emergent themes: 

a) Transcendence (cosmos, others, Self conexion, 

confidence); 

b) Purpose (personal and future meaning, hope); 

c) Reconciliation (acceptance and belonging, new 

relationships); 

d) Plenitude (self integration, self efficacy, self 

renovation and self restoration). 

A subtle consideration of spiritual beliefs should be 

considered as an essential component of palliative 

care assessment and should be considered as an 

essential component of palliative training and 

continuing professional development. 



Challenges in Making the Transition to 

Palliative Care for People with Dementia: An 

Exploration of the Views of Health Care 

Practitioners 

Ryan T. 1 , Gardiner C. 2 , Ingleton C. 2 , Bellamy G. 3 , Gott M. 3 

1 University of Sheffield, School of Nursing & 

Midwifery, Sheffield, United Kingdom, 2 University of 

Sheffield, Sheffield, United Kingdom, 3 University of 

Auckland, Auckland, New Zealand 

Research aims: Palliative care for people with 

dementia has been slow to develop across Europe. 

Governments have, however, promoted policyaimed 

at redressing this situation. Overriding concerns have 

focussed upon workforce development and access for 

non-cancer patients. This paper utilises the views and 

experience of health care practitioners in order to 

explore the challenges inherent in achieving 

appropriate transitions to palliative care for people 

with dementia. 

Study design & methods: A qualitative study 

design was adopted. Four focus groups were held at 

General Practices (n=28), and four focus groups (n=26) 

and four interviews (n=4) were held in acute hospitals 

and hospices in two UK cities. Participants from a 

109 


(Thursday)


(Thursday) 


range of disciplinary backgrounds were recruited to 

the study. Focus group and interview transcripts were 

recorded and transcribed verbatim. Transcripts were 

read by three of the authors and core themes were 

identified. A coding framework was developed by 

consensus. Sub-themes were then identified. 

Results: Four major themes were identified: making 

transitions; workforce readiness; continuity and 

working together. The findings suggest that there 

remain huge difficulties in enabling people with 

dementia to make appropriate transitions to palliative 

care. These problems exist in relation to a dearth of 

skills within the workforce, discontinuities in caring 

relationships, resource anxiety and poor interprofessional 

working. 

Conclusions: This paper highlights the challenges 

that people with dementia and their families face when 

attempting to access appropriate palliative care services. 

There is a need to establish skills and competences 

within generalist palliative care provision to enable 

health care practitioners to feel confident in working 

with this vulnerable group of the population and to 

ensure that continuity of care is established to assist in 

decision making at the end of life. 



The Impact of Early Review by the Hospital 

Specialist Palliative Care Team (HSPCT) of 

Patients with Life-limiting Diseases Admitted 

to the Emergency Admissions Unit (EAU) in 

the Acute Hospital Setting 

Lye P.A. 1 

1 South Devon Healthcare Foundation Trust, 

Department of Palliative Medicine, Torquay, United 


Background: The Acute Trust identified that early 

involvement of specialist teams in the EAU may result 

in improved patient outcomes. This study was to 

identify the benefits/burdens of this intervention by 

the HSPCT. The HSPCTs general referrals received 

from the acute setting consist of 78% with malignant 

disease and 22% with non-malignant disease ( Data 

2009-2010) Prior to this study referrals received 

February-July 2009 from EAU consisted of 92.6% 

malignant disease 7.4% non-malignant. 

Method: The Board Round is a verbal discussion on 

EAU led by the Acute Medical Physicians involving 

the multi disciplinary team reviewing all expected 

emergency medical admissions on the unit. A 

member of the HSPCT attends. Patients with lifelimiting 

diseases are identified and a referral to the 

HSPCT is initiated if appropriate. This information 

was collected February to July 2010. A total of 25 

patients were referred by the Board Round to the 

HSPCT during this period. 

Results: 

59% of patients reviewed had malignant disease, 41% 

non-malignant disease 

53% of patients died in the acute setting on a care of 

the dying pathway 

33% of patients were discharged routinely within 7 

days 

7% of patients were transferred to the local Hospice 

7% of patients were discharged home on a Rapid 

Discharge Pathway 

Conclusions: Percentage of referrals received by 

HSPCT for patients in the EAU with non-malignant 

disease was higher proportionally than the data 

collected prior to the commencement of the Board 

Round. 

All patients seen by the HSPCT who died in the 

hospital were on a care of the dying pathway with 

appropriate medications prescribed. 

The HSPCT worked with the medical teams to ensure 

safe and timely discharge within 7 days. 

The HSPCT facilitated appropriate transfers to the 

local Hospice. 

The HSPCT facilitated Rapid Discharge for patients 

who wished to die in their preferred place of care. 

The profile of the HSPCT has been raised during this 

study leading to increased referrals to the team 

without further resources. 



End of Life Care (EoLC) and Emergency 

Ambulance Clinicians in the UK: Reported 

Practices in Clinical Management and Views 

on Do Not Resuscitate Orders (DNAR) 

Munday D. 1 , Gakhal S. 1 , Bronnert R. 1 , Cole R. 2 , Seeley S. 3 , 

Stuart P. 4 , Pettifer A. 5 


Coventry, United Kingdom, 2 West Midlands 

Ambulance Service, Dudley, United Kingdom, 


4 Myton Hospices, Warwick, United Kingdom, 

5 Coventry University, Coventry, United Kingdom 

Aims: Emergency ambulances may be called to 

attend terminally ill patients in the community. It 

may be appropriate for such patients to remain at 

home or inappropriate for them to undergo 

cardiopulmonary resuscitation following a cardiac 

arrest. Advance care plans (ACP) and DNAR, which 

may be written by any senior clinician, can highlight 

patients’ preferences and enable appropriate decisions 

to be made. Since few studies have explored this area 

of practice, we aimed to survey ambulance clinicians’ 

experiences in EoLC and their perceptions about the 

validity of DNAR. 

Method: 200 questionnaires were distributed to 

ambulance clinicians in one large regional service, 

exploring the frequency of calls to terminally ill 

patients and opinions about the validity of DNAR. A 

scenario that presented a dying patient explored 

respondents’ opinions as to whether or not they 

would have transported him to hospital. Responses 

were analysed with SPSSv18. 

Results: 107(53.5%) responses were received. 65% 

reported attending at least 1 call for terminally ill 

patients in every 5 shifts (ie 1/week); whilst 33% 

reported attending a cardiac arrest in a terminally ill 

patient once in 10-20 shifts (ie 1-2/month). 84% 

reported that a DNAR was available for fewer than 1 in 

10 terminally ill patients. 80%, 78% and 27% 

respectively believed that a DNAR correctly written by 

a consultant, GP or palliative care nurse specialist was 

valid. In response to the scenario, 64% of respondents 

were likely to have transported the dying patient to 

hospital, falling to 14% if an ACP clearly stated the 

patient did not want admission. 

Conclusion: Ambulance personnel frequently 

attend terminally ill patients including those who 

have had a cardiac arrest. Few dying patients have a 

DNAR and there is some confusion as to their validity. 

Most respondents would respect an ACP which stated 

that a patient wanted to remain at home. Further 

research is needed to explore actual practice. 

Funder: NHS West Midlands 



Psychosocial (PS) Attention at the End of Life. 

The EAPS Experience in the South of Madrid 

Carreras Barba M. 1 , Gomez Martin P. 2 , Valls I Ballespi J. 3 

1 Fundacion Instituto San Jose. Hospitaller Order of St. 

John of God, Madrid. Subsidized by Fundación Obra 

Social “la Caixa”, EAPS, Madrid, Spain, 2 Fundacion 

Instituto San Jose. Hospitaller Order of St. John of 

God, Madrid. Subsidized by Fundación Obra Social “la 

Caixa”, Equipo de Atencion Psicosocial, Madrid, 

Spain, 3 Fundación Instituto San José, OHSJD, Director 

Medico, Madrid, Spain 

Objectives: To contribute to the improvement of the 

quality of life of patients (pts) and families suffering 

from advanced diseases, experiencing a particularly 

vulnerable situation.To support professionals who 

care for them. 

Method: To implement a PS program, both at home 

and the hospital setting lead by a clinical psychologist 

and a social worker (SW). 

Patients: From May to October 2010.Pts included: 

120; Male: 55%; Average of age: 67; Pensioner: 55,8%, 

sick leave: 12,5%, disability: 7,5%, housewife: 7,5%, 

Medium/low salary: 53%; No-external support: 58%; 

Advanced disease aetiology: oncology: 92%; Average time 

from diagnosis: 20m; Religious faith: 61%, Catholics: 

53%; patient alone: 10 %; Main carer: 87%; 

Relatives: Relatives included: 191; Female: 70,15%; 

Average of age: 52y; Relationship with pt: partner: 

36,64%, son/daughter: 42,40%, Work situation: Active: 

40,83%, pensioner: 26,70%, housewife: 10,47%, Sick 

leave: 8,37%, unemployed: 8,37%, others: 5,23%; 

Religious faith: 46%;, patient alone: 10 %Main carer: 118: 

(female 77%); partner: 53,38%, son/daughter: 30,50% 

Motive for consultation: Psicosocial 14%HTC, 11% 

HST 

Psychological: anxiety, depressive symptoms, 

associate anticipation of loss, difficulties in 

communication, conflict of interest, difficulties in 

treatment adherence. 41% HTC. 50% Hospital. 

Spiritual: existential/spiritual suffering. 

Social: Overburden, care placement at time of 

discharge from hospital, family organization, 

provision of external care support, economical 

burden. 45% HTC, 40% Hospital. 

Conclusions: The incorporation of the EAPS program, 

in the PCTs potentiates optimum and holistic attention 

to both the pt and family, providing resources, 

improving family structure and communication, offers 

interventions for anxiety, depression and overburden. 

For the pt and family, attention provided by the same 

professionals in hospital and at home favors continuity 

of the PS intervention, improvement in the 

management of the case. 



Exploring the Needs and Experiences of 

Patients and their Caregivers in Pain 

Management within the Palliative Care 

Environment 

du Toit C. 1 , Palliative Nursing Care Students-Technikon 

Pretoria 

1 Janssen Pharmaceutica, Medical and Regulatory, 

Johannesburg, South Africa 

This study aimed to develop an adaptation 

programme to enhance the quality of life of palliative 

care patients and their caregivers within patient 

support groups. The needs and experiences were 

explored, through which a number of anxieties, 

uncertainties and new demands were identified, as 

main themes.The categories were psychological and 

psychosocial. The subcategories included uncertaintyscaed, 

dying, pain, medication and insomnia. 

The research design chosen for this study was a 

qualitative design, with an exploratory, descriptive 

strategy within a phenomenological framework. The 

sample was selected from patients who received 

treatment in an eastern region of the city (n=60). 

Concepts derived from the literature search included 

stress, cognitive changes and support groups. The 

study resulted in the development of a lifestyle 

adaptation programme for the patients and their 

families with life-limiting disease. 

Consent to conduct this research study was obtained 

from the Faculty Research Committee and Ethics 

committee of Technikon Pretoria. Written informed 

consent was obtained from all participants involved 

in this study and the aim, research objectives and 

methods were explained to participants. 

Source funding: Nil received 



Analysis of the First Year of Implementation 

of Music Therapy in a Palliative Care Unit 

(PCU) 

Serra i Vila M. 1 , Dones Sánchez M. 1 , de Luis Molero V.J. 1 , 

Mesa Virella C. 1 , Valls i Ballespí J. 2 

1 Fundación Instituto San José, Palliative Care Unit, 

Madrid, Spain, 2 Fundación Instituto San José, Medical 

Director, Madrid, Spain 

Introduction: Literature into music therapy in endof-life 

care indicates how it can benefit as well as 

manage some of the needs of both the patient and 

family. Particularly in improving pain and anxiety 

perceptions, as a tool to adjust to the new situation, in 

increasing the quality of life, making possible 

communication and emotional expression through 

music, easing the flow of spiritual needs, and offering 

support to the farewell. Since November 2009 music 

therapy is developed in our PCU, helping achieve its 

main goal: offer life until the end. 

Objectives: 

- To describe the development of our music therapy 

program 

- To develop a integrated service in a holistic care team 

- To establish indicators to measure program results 

Method: 

- Descriptive qualitative study 

- Patients were referred by medical team, patient’s 

own or caregiver’s request 

- Individual or familiar interventions to meet 

participants’ needs 

- Number of participants, pathologies, objectives and 

music therapy techniques used were registered 

- Verbal and/or written evaluation by patients, 

caregivers and clinical staff 

- Population: patients, family and caregivers admitted 

in the PCU 

- Study period: Nov. 2009 - Oct. 2010 

Results: 

- Total of interventions: 533 

- Number of specific music therapy interventions: 489 

(91,74%), 85 individual and 404 in groups 

- Participants: 468 patients, 742 caregivers 


- Main developed goals: increasing relaxation, 

facilitating emotional expression, promoting 

support, helping the farewell 

- Techniques: music listening (live music), instrument 

playing and improvising, singing, song writing 

- Evaluation: 100% positive or very positive 

Conclusions: 

- There have been 489 interventions in 1 year 

- Needs addressed: facilitation of relaxation, increase 

of self-expression and communication, promotion 

of support to relatives/caregivers, facilitate farewell 

- Majority of positive evaluation by participants 

- Excellent inclusion of the program in the clinical 

team 

- More intervention with families and caregivers is 

requested 



Perceptions of Quality of Care in Agony and 

Death 

Soares C.S. 1 

1 HJLC, UCCD, Anadia, Portugal 

The issues of quality and dignity are emerging in 

assisting the patient and family in palliative care. 

The research aimed to determine the possibility of 

assigning a degree of satisfaction of family members 

who experience a process of agony and death. 

This study was undertaken in order to perceive the 

quality of care in agony and death, with the following 

objectives: know the emotional pattern of the patient, 

family and professionals facing the agony and death; 

identify how the symptoms and duration of agony 

affect the quality of life in the final days. 

We started a case study where we used a qualitative 

methodology. We used descriptive and content 

analysis to process data. 

The study ran between 2007 and 2009, on patients 

followed by the home unit and inpatient unit of a 

hospital in Portugal. The techniques used were the 

questionnaire about the satisfaction of the family 

members, the registration done by the nurses and an 

interview. 

The results indicate for an average time of agony of 41 

hours, being the shortest of 6 hours and the longest of 

109. The common symptoms were cognitive 

impairment, dyspnea, asthenia and pain. With the 

exception of one family member, all accepted the 

process of agony and death with reactions of crying 

and consolable grief. The emotional pattern of 

patients was identified by nurses as acceptance. All 

family members referred their satisfaction for the 

palliative care, and the satisfaction level was 0.96. The 

comments referred health professionals as “very 

human in their actions” and “help to die with dignity”. 

The nurses reported the need for supervision and 

emotional training. Our findings point to the need to 

monitor this process with some of the dimensions 

under consideration. As limitations of this study are 

the non-validation of a standardized registration to 

the process of agony and the impossibility to replicate 

this study in other contexts. 



Impact of New Actions of the Nurse in 

Coordinating Assistance to Patients with 

Terminal Heart Disease 

Silva C.C.B. 1 , Mendes A.F. 1 , Coleto A. 1 , Ferreira L.M. 1 , 

Palomo J.S.H. 1 , Ferreira F.G. 1 

1 Instituto do Coração da HCFMUSP, Coordenação de 

Enfermagem, São Paulo, Brazil 

In our clinical practice, we found that most patients 

with chronic degenerative diseases has focused on its 

therapeutic management of symptoms. The 

identification of these patients and follow up with 

appropriate attention on the philosophy of palliative 

care is a way to improve and to adjust the assistance. 

The nurse is a professional with key role in care 

planning, the responsibility of providing 

information, liaison with the interdisciplinary team, 

counseling and patient-family education, and build a 

bond of affection. 

The objective was to describe how the planning and 

development of nursing interventions and assistance 

to the interdisciplinary team and patients with 

terminal heart disease in the first year of visits to the 


Exploratory, descriptive, retrospective study of 

records of patients with terminal heart disease treated 

in the philosophy of palliative care in the period from 

January 2009 to January 2010. We examined the 

charts of patients attended at the end of life and notes 

the technical visits of the nurse in palliative care. 

It was found that palliative care in cardiology is a 

condition of treatment together with curative 

therapy, there are symptoms and discomforts that 

have to be brightened up. Systematic evaluations of 

pain control, dyspnea and the oxygen utilization had 

been carried through. Therefore, they need to 

approach a competent and specialized 

interdisciplinary planning. In palliative care the 

action is not driven solely by technical and scientific 

competence, but supported in diagnostic and 

therapeutic processes with the challenge of finding 

work everyday to a harmonious balance between 

reason and emotion. 



Touch-ball Method as Integrated Treatment 

in a Palliative Care Program. Our Experience 

Benanchi S. 1 , Pecci A.P. 2 , Mazzocchi B. 2 , Integrated 

Complementary Medicine 

1 Hospice ‘Roberto Ciabatti’, Dipartimento di 

Leniterapia, Grosseto, Italy, 2 Hospice ‘Roberto 

Ciabatti’, Grosseto, Italy 

The Touch-Ball method is the result of theoretical 

models and experimental results, supported by 

positive answers obtained from the body rediscover 

and its role in the building of his own personality. 

The method avails of spherical objects different for 

elasticity, dimensions, sound vibration effects and 

colors, in order to stimulate rotational variations in 

space, speed, rhythm and pressure by using the hand 

palm. 

The stimulations are exercised in a proper way, using 

the spherical objects following a trained technique, 

keeping to the different involved part of the body 

with sensitiveness granting the contact and the ability 

to follow their roundness so enriching the 

somatomental relational model. 

The body becomes the protagonist of the selfconsciousness 

in a constant reprocessing of the 

sensory-corporeal and perceptive-affective 

experiences linked to the psychic and bodily me. 

In collaboration with the Palliative Care Unit - 

Grosseto, we have started a study involving 343 

oncological patients inserted in a palliative care 

program, from 09/01 to 10/09. These pts came from 

different settings:home care, day hospice and hospice. 

343 pts enrolled, P.S. ECOG 1-2=295 pts. ECOG 3- 

4=43 pts. M = 73, F = 270. Mean age 53 years. 35% GI 

cancer; 20% lung cancer; 20% urogenital cancer; 15% 

others. 40% in patients; 60% outpatients. 

The program consisted of two “1 hour meetings” per 

week. 

Results: the quality-of-life enhancement from both 

psychological and organic point of view was 

remarkable in both samples using PGWBI instrument. 

A better pain relief has been recorded in 90% pts 

involved in the treatment (mean reduction of VAS = 

2,3 points, starting from 6.5 mean of VAS) with a 

considerable reduction of opioid drugs intake ( - 25%). 

Our intent is to reconfirm in other case studies (RCT) 

the importance and the results that Touch-Ball 

method offers as an integrated therapy in the somatic 

and emotional problems, representing too often a 

dramatic story for the oncological patients. 


Withdrawn 



Outpatient Palliative Cancer Care in the 

Health Care Delivery System at Regional Level: 

Own Experience 

Slovacek L. 1 , Priester P. 1 , Kopecký J. 1 , Slánská I. 1 , Petera J. 1 , 

Filip S. 1 

1Charles University Hospital, Hradec Králové, Czech 

Republic 

Outpatient palliative cancer care (OPCC) for Complex 

Oncology Center (COC) of Charles University Hospital 

in Hradec Králové, Czech Republic started its 

operations on January 1, 2008, following close 

cooperation with general practitioners, home health 

care agencies and hospice. OPCC provides care for 

patients with end-cancer treatment in COC. During the 

period 01/01/2008 to 01/01/2010 was way OPCC 



treated 324 cancer patients with end-cancer therapy 

(122 men, 202 women). The number of deaths in this 

period the total number was 324 194 (60%) (97 men, 

97 women). Deaths in Hospital in the 59 (30%) (35 

females, 24 males). The number of deaths in hospice 

was 15 (8%) (11 women, 4 men). The number of deaths 

in a health care facility was 6 (3%) (4 women, 2 men). 

Number of deaths in hospice were 6 (3%) (3 women, 3 

men). The number of deaths at home was 108 (55.7%) 

(44 women, 64 men). Provision of palliative care of 

cancer patients with end-cancer treatment has its 

pitfalls, which can be grouped into 5 basic points: 

1. Lack of interdisciplinary collaboration (hospital 

standard). 

2. Patients and their family members to prevent 

transmission to care non-oncologists. 

3. Lack of education and education of patients and 

their families by doctors and medical staff in 

management problems of difficult life situations 

associated with bereavement. Die with dignity in a 

civilized society should be more commonplace than 

the legalization of euthanasia. 

4. Most preterminal cancer patients and their families 

negatively evaluate the location of the patient in 

hospice. Hospice is patient and their family members 

still perceived as a place of dying and death. 

5. Lack of experience (and motivation?) Practitioners 

in the provision of general palliative care. 

Acknowledgements: Supported by the Research 

Project of the Ministry of Health of the Czech 

Republic No. 00179906 and the Specific University 

Research of Charles University in Prague No. 53251. 



Symptom Management at the End of Lifechallenges 

and Difficulties in Palliative Care 

in the Republic of Macedonia 

Veterovska Miljkovik L. 1 , Ivanovska M. 1 

1 Gerantology Institute 13 Noemvri, Hospice Sue 

Ryder, Skopje, Macedonia, the Former Yugoslav 

Republic of 

Aims: To show the difficulties, which daily hospice 

medical staff who work with terminally ill patients are 

faced with, despite the lack of appropriate 

medicaments to be applied at the end of life, religious 

reasons, mentality of the family members and non 

existing ethical and legal regulation in the country. 

Methods and statistics: More intensive 

development of palliative care in the country began 

with the opening of 2 hospices for terminally ill 

pacients. Given that the state has not yet branched 

network of palliative care, with a home palliative care 

network, duration in hospices is extended for 3-4 

weeks. Mitigating circumstance is that they operate 

within the public health organization-Gerontology 

Institute, which means that medical services for 

palliative care are covered by public health. 

Results: Most common symptoms of hospice 

treatment at the end of life are: pain, agitated 

delirium, bleeding, cardiac and renal failure, coma, 

where parenteral morphine is given. Experiences 

showed that with sufficient doses the patient can die 

in comfort and dignity. Greatest fear is of respiratory 

depression. Serious problems exist with 

breatginglessness, where most of the doctors take as 

cardiogenic pulmonary edema, which is treated with 

diuretics; antisecretolitic drogs were not to be given. 

Even bigger problem is terminally sedation, which is 

very rarely applied, and where there is no existence of 

ethical and legal regulations. 

Conclusion: Despite the fact that interventions and 

effective approaches to controlling symptoms at the 

end of life have been well documented, health care 

professionals in the country have serious obstacles. 

Common practice in medical circles during the 

curativ treatment to the patient is to hide from him 

the diagnosis of disease. This apply also to family 

members, who did not know the thruth and require 

the doctor to extend the life and account the quality 

of that life. For these reasons a large number of 

patients are dying in hospices. 



Healthcare Professionals’ and Patients’ 

Opinions about Palliative Care in a Brazilian 

Private Hospital 

Reis A.X. 1 , Gabriel T.F. 1 , Cipullo R. 1 , Pereira R.O. 2 , Maciel 

R.G. 1 

1 Complexo Hospitalar Edmundo Vasconcelos, 

Internal Medicine, São Paulo, Brazil, 2 Complexo 

111 


(Thursday)


(Thursday) 


Hospitalar Edmundo Vasconcelos, Critical Care, São 

Paulo, Brazil 

Physician’s power of therapeutic intervention has 

grown in the last century, due to the Science progress. 

However, there is no reflection about the real benefit 

to the patient. The palliative care arose in order to 

provide confort to the patients and their families 

during the end of life. 

Methods: Forty healthcare professionals who work at 

Edmundo Vasconcelos Hospitalar Complex were 

selected consecutively to take part in the study. Eighty 

patients were paired with the healthcare professionals 

randomly at the ambulatory according to age and 

gender. A questionnaire was used for all participants 

and their answers were compared. The parametric 

variables were calculated using average and standard 

deviation, and the non-parametric variables were 

studied using chi square. 

Objectives: Comparing health care professionals’ 

opinion witn other professionals’ opinion concerning 

palliative care. Comparing opinions between people 

who graduated in college and people who studied 

until high school about the end of life. 

Results: A hundred and twenty people participated 

of this research. Eighty of them were out patients and 

forty were health care professionals. The health care 

professionals chose the palliative care situations more 

frequently than the other professionals. The 

education also affected the opinions. People who 

graduated in college chose conservative procedures 

more frequently than people who have high school 

level. 

Conclusion: Health care professionals are familiar to 

critical patients, therefore this may affect their 

opinion. Moreover, education level also may affect 

people’s opinion about palliative care. 

Keywords: Palliative care, End of life, health care 

professionals’ opinion, patients’ opinion. 

Main source: Edmundo Vasconcelos Hopitalar 

Complex 



A Brazilian Model for Assistance in Palliative 

Care 

Pereira Guimaraes A.L. 1 , Matos J.A. 1 , Benevides de Oliveira 

L.P.T. 1 , Oliveira M.E.V. 1 , Grupo de Estudos da UNICA 

1 Unidade do Cancer de Alagoas, Palliative Care Unity, 

Maceio, Brazil 

The concept of palliative care originated in the hospice 

movement, with two key elements that preach: the 

effective control of pain and other symptoms and the 

psychological support of patients and their family. Was 

created in 2004 in Alagoas, northeastern Brazil, 

assistance to a low income patients with advanced 

cancer without oncology therapeutic possibility and 

users of Brazilian Public Health System, offering 

inpatient, outpatient and home care and Opioids 

Donation Program. We retrospectively reviewed 

records of patients from January 2006 to March 2010. A 

total of 129 cancer patients in palliative care only were 

including. In this analysis, 73 (56.5%) patients were 

female; regarding tumor location highlighted tumors 

of head and neck 24 (18.6%), followed by cervix uteri 

21 (16.4%), breast with 14 (10.9%) and lung 11 (8.6%). 

About 72 (55.8%) patients received some type of cancer 

treatment. The main reason for hospitalization in 97 

(75.3%) patients were poorly controlled pain, followed 

by anorexia and cachexia syndrome in 16 (12.5%). 111 

made use of opioids (86%) and 94 patients (73%) had 

infection and required the use of antibiotics. The main 

pathway for drug and hydration in 124 (96.1%) 

patients were intravenous. In our analysis, time of 

hospitalization ranged from 1 to 169 days, the patient 

can spend just one day (Day hospice) until the time 

required to their recovery and return to home, being 

then accompanied by Multidisciplinary Team on home 

visits. Palliative care then, affirm life and regard death 

as a normal process, no postpone nor prolong death, 

comes the relief of pain and other symptoms, 

integrating care, offering support, so patients can live as 

actively as possible helping families and caregivers in 

the grieving process. 



The Presence of Birds Brings Happiness to the 

Patients at the End of their Life 

Coster B. 1 , Baio V. 1 , Dumont C. 1 , Spoto A. 1 

1GHdC, IMTR, Service des Soins Palliatifs, Loverval, 

Belgium 

Caring for seriously ill patients, including those near 

end of their life requires a peaceful environment. 

Our twelve-bed unit is located in a park. 

In December 2009 the team decided to place bird 

feeders outside of the window of each room. 

Since then we have observed an interest from many 

patients and families for those little birds. 

This project helped us to focus the creativity of 

volunteers, nurses, doctors, and hospital workers... 

Each bird feeder was made with recycled materials. 

An other goal, through the interaction with the birds, 

is to communicate the palliative philosophy. That´s 

why we will organise in 2011 a sale of bird feeders 

made by carpentry students from our area. Proceeds of 

sale will be used to inprove the quality of life and the 

comfort of our patients. 

We believe that this initiative is a good way to spread 

our vision of a qualitative end of life. 



Prevalence of Advanced-terminally Ill 

Inpatients in an Acute Tertiary Care Hospital 

Zertuche T. 1 , Güell E. 1 , Fariñas O. 1 , Ramos A. 1 , Gomez- 

Batiste X. 2 , Pascual A. 1 

1 Hospital Sant Pau, Cuidados Paliativos, Barcelona, 

Spain, 2 WHO Collaborating Centre for Public Health 

Palliative Care Programmes, Barcelona, Spain 

Objective: To determine a one day prevalence of 

inpatients fulfilling terminally and advanced criteria 

within a tertiary hospital with 6 month follow up to 

identify survival. 

Methods: A random weekday was chosen to identify 

inpatients in a 600 bed hospital affected with any of 

the following diagnosis: cancer, cardiac, renal or 

hepatic insufficiency, COPD, motor neuron diseases, 

Parkinson,AIDS and Alzheimer.The pediatric ward 

was excluded. Chart review and interview with 

attending physician and nurse was done to select 

advanced disease patients. Patients were included if 

they fulfilled any of the following criteria: (A) Gold 

Standard Framework Surprise Question (B) Palliative 

performance score of < 50%(C) NHO terminal criteria 

(D)Disease specific criteria of advanced chronic phase. 

Further interview and chart examination was done to 

obtain information on the population included. 

Results: Of a total of 501 inpatients, 238 had any of 

the diagnosis studied.126 (25%) patients fulfilled at 

least one criteria.Through the 6 month follow up 78 

of 126(61%) patients died, representing 15% of all 

inpatients. Of dying patients, 67% were men. 47% 

were cancer patients and 53% were non-cancer 

patients. 91%,76%,92%,and 83% fulfilled criteria A, 

B, C and D respectively. In 57% and 46% of cases did 

attending nurse and physician thought PC was 

needed. Symptoms assessed most by doctors were 

pain and dyspnea in 51 and 58%. In 43% of cases was 

a correct assessment of future discharge plans made by 

doctors. 48% (38) of patients died during that 

admission. Of the 40 patients discharged, 55% had at 

least one further admission to the hospital through 

the emergency room. General mean survival was 36 

days. 19% and 78% of cases consulted a geriatric 

support team and PC specialist respectively. 

Conclusion: There is a high prevalence of cancer and 

noncancer population in need of palliative care in an 

acute tertiary care hospital. Specific programs should 

be established to optimize dying population care. 



A First Comparison between the Consumption 

of and the Need for Opioid Analgesics at 

Country, Regional and Global Level 

Scholten W.K. 1 , Milani B. 1 


Pharmaceuitical Policies, Genève, Switzerland 

Objectives: To propose a rough but simple method 

for estimating the total population need for opioids 

for treating all various types of moderate and severe 

pain at the country, regional and global level. 

Methods: For each country, we determined the 

morbidity from cancer, HIV and injuries from official 

epidemiological data published by WHO and we 

calculated the related amount of opioids required to 

treat these patients. We also calculated the total 

amount of strong opioid consumption (expressed as 

“morphine equivalents”) in the top-20 developed 

countries and used the average as an arbitrary 

standard for adequate consumption. Using the ratio 

between consumption for the three conditions 

cancer, HIV and injuries and actual consumption 

from these top-20 countries, we extrapolated for all 

countries what their level of adequate use would be. 

Results: We were able to calculate the level of 

adequate opioid consumption for 145 countries: 

5.5 billion people live in countries with low to nonexistent 

access (83% of the world’s population); 

250 million: moderate access (4%); 

460 million people (7%): adequate access; 

430 million (7%): insufficient data available. 

In 2006, the world used 231 tonnes of morphine 

equivalents; if all countries increase their 

consumption to levels sufficient for addressing all 

moderate to severe pain adequately, the required 

amount will be 1292 tonnes, which is almost six times 

higher. 

Conclusion: Only 460 million people live in 

countries with adequate consumption levels for 

opioid analgesics. This means that the remaining 6 

billion will not be treated adequately when in pain. 

Good access to opioid analgesia is rather the 

exception than the rule. 

Source of funding: Dutch Ministry of Health, 

Welfare and Sport and other non-commercial entities 



Results of Mortality Trends in Salamanca in 

the Period between 1975 and 2007 

Sánchez Domínguez F. 1 , Sánchez Chaves M.P. 1 , Gonzalez 

Prieto M. 1 , Sánchez Sánchez N. 1 , Rodriguez Rodriguez Á. 1 , 

Canal Boyero M.J. 1 , Córdoba Martínez P.M. 1 

1 Hospital Clínico, Oncología, Salamanca, Spain 

Objective: The aim of this study is to analyze trends 

in cancer mortality in the province of Salamanca, in 

the last three decades. 

Methods: To achieve this objective, an 

epidemiologic study, descriptive and ecological, of 

patients who died in the province of Salamanca 

during the period from January 1, 1975 and December 

31, 2007. Data are from death certificates, and are 

processed by the National Statistics Institute (INE). 

Results: We compared mortality rates, age-adjusted 

to world population of 6 main tumors, by gender, 

with the following results: In men, the highest rates of 

mortality are lung cancer, followed by colorectal 

cancer, prostate and stomach. Gastric cancer suffer a 

major drop, from being the leading cause of death in 

the second half of the 70´s to the fourth cause of 

death in the first half of 2000. In women, the leading 

cause of cancer deaths still breast cancer, followed by 

colorectal cancer, gastric cancer, lung cancer and 

cancer of the cervix, endometrium. 

Conclusions: In this work, it demonstrates the 

continuing positive trend in recent years, which are 

major determinants in the reduction of lung cancer 

and other tumors associated with snuff in men. In 

women, the most relevant contribucción comes from 

the continued decline in cervical cancer and, most 

importantly, the most recent decline in mortality 

from breast cancer. Some of these declines were 

related to screening and improved diagnosis, 

although the decrease in mortality from breast cancer 

was mainly due to improved treatment. In Spain, 

there is a delay, compared with Europe, the decline in 

mortality of some tumors, probably because in Spain, 

the adoption of preventive measures such as reducing 

the consumption of snuff, the decreased alcohol 

intake, and control of obesity, have been taken later 

than in the European Union. 



The Palliative Home Care Teams Affect the 

Place of Death in Terminal Cancer Patients? 

Sánchez Domínguez F. 1 , Gonzalez Prieto M. 1 , Sánchez 

Chaves M.P. 1 , Sánchez Sánchez N. 1 , Rodriguez Rodriguez 

Á. 1 , Canal Boyero M.J. 1 , Córdoba Martínez P.M. 1 


Objective: The aim of this study is to assess the 

influence of a palliative home care team on the place 

of death for terminally ill cancer patients. 

Methods: We performed a retrospective cohort study 

of patients who died of cancer in the province of 

Salamanca, during the period from January 1, 1998 

and December 31, 2007. Patients were collected from 

the database of home palliative care units in the 

province of Salamanca, from the Documentation 

Service Complex University of Salamanca and the 

National Statistical Institute of Spain (INE). 

Results: A total 10,344 patients die from cancer in 


the province of Salamanca, which were followed by 

home-based palliative care team (HPCT) a total of 

1724 patients. 5869 died in hospital (56.5%), of which 

3,766 were male (59.16%) and 2,103 women 

(52.85%). Looking at the trend over time, we see a 

steady increase of deaths in hospital with an increase 

of 18.59% between the 1998-2002 and 2003-2007, in 

males, and 13.69% in the same period, among 

women. To analyze why home deaths/hospital, 

among patients followed and not followed by 

palliative home care units, it appears that the former 

have a higher ratio 3.62 (95% CI 3.24 to 4.05) of dying 

in home patients who do not have this track, overall, 

with a statistical significance of p< 0.001. There is a 

reason home deaths/hospital, among patients 

followed and not followed by HPCT, 9.26 higher 

(95% CI 7.95 to 10.80) in urban patients with home 

monitoring, and 2.5 higher (95% CI 2.01 to 3.10) for 

patients in rural areas followed by home care. 

Conclusions: In our study shows that for every 

patient who dies at home, with no specific home care, 

die 3.6 patients who are receiving this attention, there 

are no sex differences. If we differentiate this 

assistance areas, in urban areas the percentage 

increases to 9.26 patients treated for a domiciliary care 

unit for every patient who does not receive this 

assistance. 



Multicentre Study on the Epidemiology of 

Chronic Pain, Treatment Appropriateness 

and Satisfaction in Ambulant Cancer Patients 

in Catalonia (Spain) 

Porta-Sales J. 1 , Espinosa Rojas J. 2 , Nabal Vicuña M. 3 , 

Vallano Ferraz A. 4 , Verger Fransoy E. 5 , Planas Domingo 

J. 6 , Calsina Berna A. 7 , Beas Alba E. 2 , Gómez-Batiste X. 2 

1 Institut Català d’Oncologia, Palliative Care Service, 

L’Hospitalet de Llobregat, Spain, 2 Institut Català 

d’Oncologia, QUALY, L’Hospitalet de Llobregat, 

Spain, 3 H. U. Aranu Vilanova, Unitat Cures Palliatives, 

Lleida, Spain, 4 H.U. Bellvitge, S. Farmacologia Clínica, 

L’Hospitalet de Llobregat, Spain, 5 H. Clínic, S. 

Oncologia Radioteràpica, Barcelona, Spain, 6 H.U. El 

Mar, Dept. Cures Palliatives, Barcelona, Spain, 7 Albada 

CSS- C.S. Parc Taulí, Unitat Cures Palliatives, Sabadell, 


Aim: To describe the frequency and causes of chronic 

pain(CP), the appropriateness of its treatment and 

satisfaction in ambulant cancer patients (pts). 

Methods: Cancer pts attending out-pts clinic of 

oncology & palliat care services with pain or analgesic 

treatment for ≥ 2wks were included. Assessment 

included demographic, treatment, Brief Pain 

Inventory(BPI),Pain Management Index(PMI) and 

Pain Perception with Pain Management (PPPM). 

Results: We included 437 pts(100% sample size)from 

25 centres. Prevalence of CP was 40%.Of the 175 pts 

with CP, 126(72%) were evaluable and 49 were not 

(48 non-consent, 1 cognitive failure). Evaluable pts: 

mean age 66yrs-old, median KPS 80, males 50.8%, no 

current antitumoral treatment 43% and median time 

from diagnosis 1.4 yrs. Median duration CP was 20 

wks. The CP pathophysiology was: somatic 

40.8%,visceral 14.4%,neuropathic 2.4%,mixed 

40.8%,others 1.6%.CP was related with cancer in 

49.2% pts, treatment 11.9%, nor cancer- nor 

treatment 34.1%, unknown 4.8%; the mean average 

pain was 3.5,maximum pain 6.1 and minimum 

1.6.Overall mean CP interference was 3.9.Mean CP 

improvement was 55%. No regular analgesia in 

21.4%, analgesia prn 27%, and with strong opioids 

25.6%.The mean daily oral morphine dose 

equivalent:164.4mg. One single analgesic type was 

taking by 45.2% pts and combinations by 16.1%. 

Over 42% had rescue analgesia prescribed. The 

appropriateness of analgesic treatment (PMI)was 

56%.Satisfaction with the physician & nurse care 

75.6% pts, with respect to pain relief 61.1% pts were 

satisfied. 

Conclusions: 

1) Presence o long-lasting mild-moderate CP with low 

impact on pts; 

2) Nearly half of the sample has no regular analgesia; 

3) Moderate degree of appropriateness in analgesic 

prescription, also with respect to rescue therapy; 

4) Overall high satisfaction with care even moderate 

CP relief. 

5) There is still room for improvement in the 

ambulant care of CP in Catalunya. 

This study had been supported by a grant of the 

MaratoTV3.Fundation. 



Percentage of Terminally Ill Cancer Patients 

Served by a Dedicated Team of Palliative Care 

in the Province of Salamanca 

Sánchez Domínguez F. 1 , Sánchez Chaves M.P. 1 , Gonzalez 



1 Hospital Clínico, Oncología (Home Palliative Care 

Team), Salamanca, Spain 

Objective: Knowing the proportion of patients seen 

by a dedicated team of palliative care (both hospital 

and home) in the province of Salamanca. 






province of Salamanca, from the Documentation 


National Statistical Institute of Spain (INE). 

Results: A total 10,344 patients die from cancer in 

the province of Salamanca during the period from 

January 1, 1998 and December 31, 2007. A total 

10,344, 5869 died in hospital (56.5%), of which 3,766 

were male and 2,103 women. Of the 10,344 patients, 

2499 (24.2%) were attended by a dedicated team of 

palliative care. Of the 2499 patients, 1467 (58.7%) 

patients were treated by palliative home care team, 

774 (31%) by the hospital palliative care team, and 

258 (10.3%) by both. When we study the data by year 

of death, we observed that the percentage of patients 

seen by a specific team of palliative care is 14% in 

1998 to 38% in 2007. 

Conclusions: In our study, we found, as you progress 

through the study period, a significant increase in 

patients receiving specific attention to palliative care 

units, although still very far from the 60% is 

considered ideal. This shows that there are 

insufficient resources to perform adequate coverage. 



Factors Associated with the Patient that 

Influence the Place of Death in Cancer 

Patients with Terminal Illness 

Sánchez F. 1 , Gonzalez M. 1 , Sánchez M.P. 1 , Sánchez N. 1 , 

Rodríguez Á. 1 , Canal M.J. 1 , Córdoba P.M. 1 


Objective: The aim of this study is to analyze the 

factors associated with patient that may influence 

place of death of cancer patients in the province of 

Salamanca. 





the database were obtained from the Documentation 


National Statistical Institute of Spain (INE). Data 

collected include: leading cause of death, age, year of 

death, place of death, usual residence and sex. 

Results: We collected a total of 10,344 patients who 

died of cancer in the province of Salamanca, during 

that period. Place of residence and sex: We analyzed a 

total of 9032 valid cases. Globally, there is a reason 

home deaths / hospital, among patients from rural 

versus urban areas of 1.92 (95% CI 1.77 to 2.09). This 

ratio is 2.11, in males (95% CI, 1.89 to 2.36) and 1.56 

in women (95% CI, 1.36 to 1.79). When analyzing the 

different tumors, we found statistical significance: 

The right home deaths / hospital is positive in 

pancreatic tumors 1.28 (95% CI 1.06 to 1.55), skin 

cancer 4.34 (95% 3 09 to 6.10) and CNS tumors 1.53 

(95% CI 1.20 to 1.95), and negative in lung tumors 

0.83 (95% CI 0.75 to 0.93), urinary 0 , 72 (95% CI 

0.59-0.87), tumors of the ORL sphere 0.44 (95% CI 

0.35 to 0.57), hematological 0.32 (95% CI 0.27 to 

0.38) and liver and bile duct tumors 0.44 (95% CI 0.35 

to 0.57). 

Conclusions: The place of death of cancer patients 

depends largely on the health services available in 

your local area. Not surprisingly, contact with 

hospitals, favors the death in hospital. De Overall, 

lung tumors, urinary tract tumors, tumors of the ORL 

sphere, haematological and liver and bile duct tumors 

have a higher probability of dying in the hospital. 

This seems to be due to greater complexity in 

managing symptoms. 





Nursing Care in the Outpatient Unit of 

Palliative Care Unit of the National Institute 

of Cancer in Brazil: Working with Indicators 

Pinto C.S. 1 , Fortunato E.M. 1 , Vinhas F.R. 1 , Barbosa V.L. 1 

1 National Cancer Institute of Brazil, Outpatients Unit, 

Rio de Janeiro, Brazil 

Introduction: Indicators are variables developed by 

the need to treat information in a manner 

understandable to be analyzed and used. Indicators of 

the nursing staff are used as a tool to monitor and 

measure whether the desired results are being 

achieved. 

Objectives: This study aims to describe the 

experience in use of indicators as a tool of nursing 

services in palliative care unit of the National Cancer 

Institute of Brazil. 

Materials and methods: Data were obtained from 

general hospitals database and private database of 

nursing staff, from May to September 2010. We 

evaluated the nursing visits, procedures performed, 

wound tumor, pressure ulcers and ostomies. 

Results: There were 1970 attendances during the 

period (average 394 by month). The average number 

of new patients was 80 and mean procedures was 

1654 by month. The average number of patients with 

wounds tumor is 84.2 by month, being 58.4% (n = 

257) of head and neck and 15% (N = 66) of breast 

cancer, the stage II is the most prevalent, with 32.2% 

(N = 142). We saw that 13% (n = 59) smells grade II 

and 8.86% (n = 39) smells grade III, 48% of the odor 

decreased after the team´s approach and 14.8% 

worsened. The frequency of pressure ulcers was 1.62% 

(n = 32), being 68.7% (n = 22) in the sacral region and 

71.8% (n = 23) in stage I. When we assess the stoma of 

our patients, we observed the following results: 21.2% 

(n = 418) patients have ostomies. The incidence of 

tracheostomy in 44.7% (n = 187), followed by 

colostomy in 18.8% (n = 79), gastrostomy in 17.7% (n 

= 74) and nephrostomy in 13.6% (n = 57). 

Conclusion: We conclude that nursing care is 

indispensable when it comes to cancer patients in 

palliative care, not only by the frequency of tumors 

and ostomies, as the increasing complexity of care. 

Furthermore it is very important to use indicators, 

which give us to know the profile the population 

served by facilitating the targeting of actions to ensure 

good control of symptoms and quality of care. 



Social Profile of Outpatients in the Palliative 

Care Unit of National Cancer Institute in 

Brazil 

Pinto C.S. 1 , Lima M.H.H. 1 



Introduction: The Hospital of Cancer IV (HCIV) is 

the Palliative Care unit from the National Cancer 

Institute in Brazil. It has all the modalities of servicing 

in Palliative Care and about 1100 patients by month. 

Objectives: Our population is very heterogeneous, 

which leads to a real need to study in depth and better 

understand the profile of our patients, ensuring 

quality care. This paper aims to present the 

instrument of social assessment in our unit, created in 

May 2010, and provide an overview of the patients 

followed in our hospital. 

Materials and methods: In this study we evaluated 

the patients who began outpatient follow-up from 

July to September 2010 following the changes made 

in the instrument of social evaluation, begun in May 

2010. 

Results: We studied 98% (n = 244) of patients who 

started follow-up. We observed that 40% (n = 98) are 

married and 15.6% (n = 38) living with a partner in an 

irregular situation. Regarding schooling, 11.3% (n = 

28) were illiterate and 46.6% (n = 114) have less than 

four years of instruction. About 5.3% (n = 13) did not 

have any income and 60% have incomes below three 

minimum wages ($ 208 to $ 850). Caregivers, mostly 

family members, are assessed in situations that could 

reflect improper care. We´ve detected that 18% (n = 

44) have some complication, 39.6% (n = 17) were 

seniors and 15.3% (n = 7) were illiterate. Another 

complicating factor for the guarantee of care is that 

47% (n = 114) of patients living in other districts 

which often hinders attendance queries. 

Conclusion: When we understand the profile of our 

patients we can amend the situation, enabling better 

care, and ensure access to institutional and 

113 


(Thursday)


(Thursday) 


government subsidies, which remain preserved the 

rights of patients and their families. 



Factors Associated with Caregiver Influencing 

Place of Death in Cancer Patients with 

Terminal Illness 

Sánchez F. 1 , Gonzalez M. 1 , Sánchez N. 1 , Sánchez M.P. 1 , 




factors associated with caregiver that may influence 


Salamanca. 






province of Salamanca. Factors were included 

caregiver gender, relationship and age. 

Results: Data on a total of 1724 caregivers, of which 

228 were male (13%) and 1469 were women (85%), 27 

were from residential (2%). The average age for males 

was 72.7 ± 13 with a median of 74 and for women was 

64.5 ± 11 and a median of 66. 749 were wives (43%), 

168 husbands (10%), 539 girls (31%), 60 sons (3%), 

131 other relatives (8%), 50 caregivers recruited 

professionals (3%), and 27 were in nursing homes 

(2%). A total of 1647 valid cases, of which 228 were 

males and 1419 were women. No professional 

caregivers were collected (50 caregivers) and patients 

who had died in a nursing home (27 patients). 

Patients were separated into 5 groups, wife, husband, 

son, daughter and other relatives. Only found 

statistical significance in the group of wives and 

daughters for a died reason home/hospital of 0.55 

(95% CI 0.43 to 0.70) for wives, and 2.06 (95% 1,6 to 

2.66) for daughters. Age was associated with groups 

that had been significant relationship (wife and 

daughter). There is statistical significance in the 

sections between 45 and 74 years.The reason deaths 

home/hospital is between 2.75 (95% CI 1.11 to 6.80) 

in the period between 65 and 74, to 3.28 (95% CI 1.88 

to 5.72) for the period between 55 and 64. 

Conclusions: Patients whose sole caregiver is the 

spouse, are more likely to die in hospital compared 

with patients in whom the primary caregiver is her 

daughter. The effect of social support network of 

patients reflects the active involvement of family care 

at the end of life. 



Health-related Quality of Life and Metastatic 

Breast Cancer in a Programme of Palliative 

Cancer Care 

Slováček L. 1 , Priester P. 1 , Slováčková B. 1 , Kopecký J. 1 , 

Slánská I. 1 , Petera J. 1 , Filip S. 1 

1Charles University Hospital, Hradec Králové, Czech 

Republic 

Introduction: Quality of life term contains the 

information on an individual’s physical, 

psychological, social and spiritual condition. QOL 

evaluation is carried out by means of generic and 

specific QoL questionnaires. 

Aim: The study is evaluated the level of the healthrelated 

quality of life (HRQoL) among metastatic 

breast cancer survivors in a programme of palliative 

cancer care. 

Patients and methods: This study was prospective 

and cross-sectional. It was carried at Department of 

Clinical Oncology and Radiation Therapy of Charles 

University Hospital in Hradec Králové, Czech 

Republic. Dates were obtained during year 2008 - 

2009 among 41 metastatic breast cancer survivors in a 

programme of palliative cancer care. The mean age for 

all 41 subjects was 58 years old (aged 41 - 80 years old). 

The Czech version of generic European Quality if Life 

Questionnaire EQ-5D version was performed for 

evaluation of level of HRQoL. 

Results of study: 

1. The statistical evaluation presents very low level of 

HRQoL. The mean EQ-5D score (a dimension of QoL) 

was 55%. The mean EQ-5D VAS (a subjective health 

condition) was 59.2%. The mean EQ-5D score in 

group of healthy females was 78.4% and the mean 

EQ-5D VAS was 85% (both QoL parameters show very 

good of QoL level). 

2. The statistical evaluation not presents statistically 

significant dependence of EQ-5D score and EQ-5D 

VAS on age, smoking abuse, number of associated 

diseases and type of palliative cancer care. 

Conclusion: The results showed that subsist low 

level of HRQoL among metastatic breast cancer 

survivors. 

Acknowledgements: Supported by the Research 

Project of the Ministry of Health of the Czech 

Republic No. 00179906 and the Specific University 

Research of Charles University in Prague No. 53251. 



Continuous Sedation until Death and 

Physician Assisted Death: Are They 

Considered Morally Different? A Content 

Analysis of Opinions in the Indexed Medical 

and Nursing Literature 

Rys S. 1,2 , Deschepper R. 2 , Mortier F. 3,4 , Deliens L. 2,5 , Bilsen 

J. 1,2 

1 Vrije Universiteit Brussel, Public Health, Brussels, 

Belgium, 2 Ghent University & Vrije Universiteit 

Brussel, End-of-Life Care Research Group, Brussels, 

Belgium, 3 Ghent University, Bioethics Institute 

Ghent, Ghent, Belgium, 4 Ghent University & Vrije 

Universiteit Brussel, End-of-Life Care Research Group, 

Ghent, Belgium, 5 VU University Medical Center, 

Department of Public and Occupational Health, 

EMGO Institute for Health and Care Research, 

Expertise Center for Palliative Care, Amsterdam, 

Netherlands 

Introduction: Continuous Sedation until Death 

(CSD), the act of reducing or taking away the 

consciousness of an incurably ill patient until death, 

becomes increasingly a part of regular end-of-life care. 

It remains however a controversial topic of medicalethical 

discussions. Some argue that CSD is morally 

compa rable to physician assisted death (PAD), that it 

can be used as a form of ‘slow euthanasia’ -especially 

when artificial nutrition and hydration are withheld. 

This study wants to identify opinions in the medical 

and nursing literature that support or reject a moral 

difference between CSD and PAD. 

Methods: All editorials, comments and letters to the 

editor that discuss CSD and that are indexed in 

PubMed/MEDLINE or CINAHL were subjected to a 

qualitative content analysis. 

Results: A moral comparison between CSD and PAD 

is made in 34 of the 89 editorials, comments or letters 

that discuss CSD. Authors supporting a moral 

difference between CSD and PAD refer mainly to the 

physician’s non-life-shortening intention, the 

appropriate titration of sedative drugs or the restriction 

that CSD should be used only in imminently dying 

patients. Authors rejecting a moral difference refer 

generally to the physician’s life-shortening intention, 

the over dosage of sedative drugs or the withholding of 

artificial nutrition and hydration. 

Discussion: The arguments supporting or rejecting a 

moral difference between CSD and PAD are based on 

the same main themes, but a very different and even 

opposite appreciation of these themes concerning a 

moral difference is found. More empirical research on 

these key themes is necessary to endorse the ethical 

opinions about CSD and to clarify the concept and 

complex practice of CSD. 



Shifting the Treatment Goals from a Curative 

to a Palliative Approach: Theoretical Analysis 

of a Pivotal Concept in Palliative Care 

Jox R.J. 1 , Borasio G.D. 1 

1 Munich University Hospital, Interdisciplinary Center 

for Palliative Medicine, Munich, Germany 

Aims: Palliative care is historically and conceptually 

based on the idea to shift the goal of treatment from a 

curative and life-prolonging to a symptom-relieving 

approach. We aim to provide a theoretical analysis of 

this concept, enhancing self-understanding, 

provision of care and consultation by palliative care 


Methods: We use the methodology of analytical 

philosophy, supplemented by data from a semistructured 

interview study with 13 palliative care and 

16 critical care professionals. The interview transcripts 

were evaluated using Qualitative Content Analysis. 

Results: The concept of treatment goals marks a 

paradigm shift in medicine that traditionally focused 

on needs, indications and interventions, spurred by 

the heightened respect to patient autonomy. 

Treatment goals arise from needs and form the basis 

for indications for specific treatment measures. They 

are formulated in a dialogue between clinicians, 

patient and family. Most interview participants 

welcomed this concept, but they stated that problems 

arise when treatment goals are not transparently 

discussed, there are incompatible goals or the 

involved parties don’t share the same goals. Hints for 

discussing goals were reported to be the relapse of a 

disease, new symptoms or rising tension within the 

staff. Shifting the treatment goal is the result of a long 

deliberative process and includes priority setting of 

various specific goals. These priorities are never fixed, 

they may frequently be revised. Low priority is given 

to explicitly life-sustaining measures, but lifesustaining 

bystander effects of palliative measures 

may be welcome. Interviewees reported that the most 

frequent problems are patient or family denial, moral 

or religious ideologies, failure to identify new objects 

of hope and bad communication. 

Conclusion: The concept of shifting the treatment 

goal is a flexible and pragmatic approach that is 

welcomed by clinicians. It may also be applied in goalbased 

advance directives. 



Advanced Directives in Portugal: Palliative 

Care Professional’s Views 

Pereira S.M. 1 , Fialho R.S. 2 , Cerqueira M. 3 , Pereira A. 3 , 

Sampaio F. 3 , Fradique E. 4 

1 Universidade dos Açores (University of Azores), 

Escola Superior de Enfermagem de Angra do 

Heroísmo (Nursing School of Angra do Heroísmo), 

Angra do Heroísmo, Portugal, 2 Universidade de 

Lisboa, Faculdade de Medicina, Lisboa, Portugal, 

3 Instituto Politécnico de Viana do Castelo, Escola 

Superior de Saúde, Viana do Castelo, Portugal, 


Santa Maria, Lisboa, Portugal 

The discussion about advance directives in Portugal, 

it’s a controversial subject nowadays in our society in 

more relevant between health care professionals. 

There’s no consensus related to this matter. In fact, 

despite some professionals consider that advanced 

directives may be an important tool that will help to 

make proper decisions and to promote patients 

autonomy, other professionals consider that 

advanced directives may interfere with the human 

and relational dimension of care. 

Considering the fact that working in palliative care 

obliges to make ethical decisions and also considering 

that advanced directives might help palliative care 

teams to make better decisions, it seems relevant to 

understand the view these professionals have about 

the subject. The aims of this study are (i) to 

understand palliative care professional’s views about 

advanced directives, (ii) to identify the advantages 

that palliative care professionals consider that 

advanced directives have and (iii) to identify the 

disadvantages that palliative care professionals 

consider that advanced directives have. 

Methods: This is a Qualitative Research and we used 

an exploratory study. Our sample is an intentional 

one, compounded by professionals who work in 

Portuguese palliative care teams. Interviews will be 

realized and transcript in order to proceed to a 

grounded analysis. 

Results: Data are being presently collected. Results 

will be analysed and treated until May 2011. 

Conclusions: This study will help to understand 

palliative care professional’s views about advanced 

directives, whose legislation is being discussed at the 

present moment in Portugal. It seems that consider the 

perspective of health professionals who has a real sense 

of working in palliative care can be a key mediator in 

the process of decision making about this matter. 



News that (Dis)ilusion: Implications in 

Communication of Bad News for Cancer 

Patients 

Geovanini F.C.M. 1 , Braz M. 2 

1 FIOCRUZ, ENSP - Escola Nacional de Saúde Pública, 

Rio de Janeiro, Brazil, 2 IFF - Instituto Fernandes 

Figueiras e Fiocruz, ENSP - Escola Nacional de Saúde 

Pública, Rio de Janeiro, Brazil 

Objective: This study aims to examine from a 

physician´s perspective, the process of 

communicating cancer diagnoses, identifyng ethical 


conflicts that arise, not only in the initial phase of 

informing but also in the establishment and process 

of treatment and in the advance phases of the illness, 

as well identify the ethical issues related to the form in 

which bad news is delivered. 

Methodology: Utilizing a qualitative research 

approach, 15 semi-structured interviews of 

oncologists from the municipal of Rio de Janeiro were 

conducted. Interviewees were selected on the basis of 

the following criteria: being a clinical oncologist or 

surgeon, either male or female. Pediatric oncologists 

were excluded. 

Results: Disclosure of cancer diagnosis was 

considered a difficult task for physicians in oncological 

practice, especially when no alternative curative 

treatment was available to offer the patient. The 

difficulties are related to the stigma of the illness and 

the fantasies related to their knowledge, the difficulty 

of the professional in dealing with death, and the lack 

of specific training in graduate courses and were 

independent of sex and the period in which the doctor 

concluded graduation. Ethical conflicts were identified 

when the family calls that the diagnosis or prognosis 

of the disease is not disclosed to the patient. In the 

healing phase, the patient´s need to know the 

diagnosis, so it can cooperate with treatment became 

crucial to the revelation of truth. We identified a 

strong influence of spirituality and religiosity in the 

doctors interviewed, especially religions that ascribe a 

meaning to suffering of the individual and to support 

the idea of continuity of life after death. 

Conclusion: The advances in medical technology 

were not enough to help the oncologist at the time of 

revelation of truth to the patient, especially in 

advanced stages of disease. The autonomy of the 

patient is harmed and also the doctor-patient 

relationship. 

Financial support: Faperj 



What Are the Physicians Attitudes towards 

Advance Directives (AD) in the End of Life 

Care? A Hospitalary Survey 

Fariñas-Balaguer O. 1 , Ramos A. 1 , Tarrago E. 1 , Pascual A. 1 , 

Güell E. 1 

1Hospital Sant Pau, Palliative Care Unit, Barcelona, 


Aims: To describe the opinions and attitudes towards 

Advance Directives of physicians involved in the care 

at the end of life. 

Methods: Descriptive qualitative study. Setting: 

Urban hospital. Subjects: Physicians from different 

services. 

We organised 5 focus groups with some hospitalary 

services involved in the patient care at the end of life. 

The moderator introduces the concept of AD, and 

explains the ethics and legal frames, registration of 

the AD documents and the access to the register. An 

observer takes notes of the assistants oppinions about 

Advance Directives. The attitudes and non-verbal 

communication of the subjects and the groups were 

registered too. Finally, we deliver an anonymous 

survey to the assistants. 

Results: At the moment of abstract submission 4 

focus groups have finished with 41 assistants. Medical 

Oncology 13, Geriatricians 12, Palliative Care 4, 

Therapeutic radiology and oncology 11. 90% of 

assistants know the existence of an AD Document but 

63,4% of them do not know the content of this 

document. 

29% of the phisicians were ansked about AD by his 

patients, but only 3 doctors delivered a AD document 

to his patients. 12% of the assistants advised the 

patient in relation to AD. 

We asked to the groups about the usefulness of the AD 

in their clinical practice. 80,6% answed that AD was a 

usefull or very usefull tool for the clinical practice. 

Only 17% thought that AD was not much usefull or 

not usefull at all. 75% of phisicians detects dificulties 

in the general population for sign an AD document. 

71% believes that is important to promote the 

knowledge of AD in the general population. 

Finally only 1/3 of assistants had thougth to sign his 

own AD document. 

Conclusions: In the study the physicians have a 

positive and opened attitude towards the AD and 

believes that is usefull.There is a lack of information 

about the contents of AD and the registration of this 

documents. 



The Prosess of Developing Focus Values at a 

Hospice 

Normann A.P. 1 , Grevbo T.J. 1 

1 Lovisenberg Diaconal Hospital, Hospice Lovisenberg, 

Oslo, Norway 

The Hospice developed a new set of values for the 

institution, called focus values. 

The process was done with our own resources. 

This poster explains the methods used and the results 

that were finally agreed upon and will also present the 

survey mention below in more detail. 

A definition of the hospice was agreed upon in the 

advisory board of the Hospice: Our Hospice is a 

palliative unit based on the hospice tradition and 

exists in the tension field between the hospice 

tradition and the palliative medicine. 

First a number of different values were evaluated at a 

day conference in the advisory board of the hospice. 

These values were taken back to the staff members in a 

staff meeting and a survey was done among the 

employees. The staff had to validate the different 

values both to degree of importance for the Hospice 

and also to assess the degree of realization of the 

different values at the Hospice. Thereafter the staff 

was divided in several groups and ask to choose the 

three most important values with concretizations. 

The results were presented in a plenum session in the 

end of the meeting. From this material the advisory 

board choose the values most agreed upon and 

presented for the staff in a second staff meeting later 

on. The employees were now in groups asked to 

comment on the values chosen, to propose new 

values if they wanted and discuss how these values 

could be implemented in the daily routine work of the 

hospice. The results were again presented in a plenum 

session. 

Finally the advisory board worked out the values to be 

in focus for the next to years. 

Conclusions: The three focus values that evolved 

from this prosess were 

1. Understanding of total care 

2. Stimulation of participation from both patient and 

next of kin. 

3. Curiosity on new knowledge and professional 

development 

We experienced great enthusiasm from the employees 

in this process and a shared responsibility for 

implementing the values in the daily routine work. 



Ethical Challenges for the Staff in a 

Norwegian Nursing Home - First Results 

Bollig G. 1 , Rosland J.H. 1,2 

1 Haukeland University Hospital, University of Bergen, 

Department of Surgical Sciences, Bergen, Norway, 

2 Haraldsplass Deaconess Hospital Bergen, Sunnica 

Clinic for Palliative Care, Bergen, Norway 

Research aims: There are many ethical challenges 

in nursing homes. Aim of the present study was to 

give a spotlight description of the experiences and 

opinions of the staff of one major Norwegian nursing 

home. 

Materials and methods: The study included the 

staff of Fyllingsdalen nursing home (Fyllingsdalen 

undervisningssykehjem) one of the biggest 

Norwegian nursing homes in Bergen, Norway 

housing 188 people. First results from a questionnaire 

given to the staff are presented. The questionnaire was 

based on previous studies were mainly leaders in 

primary care and nursing homes have been 

interviewed and questioned using telephone 

interviews and a questionnaire. The results presented 

include 71 received questionnaires from staff 

members of Fyllingsdalen nursing home in Bergen. 

Results: Of the 71 participants 59 were female and 12 

male; 59 worked within a medical profession (nurses, 

nurse aids and physicians) and 12 within a nonmedical 

profession. 62 participants stated to 

experience ethical challenges or problems in their 

daily work. 6 participants did not experience ethical 

problems as a burden in everyday work whereas 53 

stated to do so in some degree and 12 to a large extent. 

63 of the 71 participants think that there is a need to 

improve systematic ethics work in their own 

workplace. Ethical challenges or problems 

encountered by nursing home staff were lack of 

resources (79%); ethical challenges in end-of-life care 

(37%), communication and professional secrecy 

(30%); patient-autonomy / decision-making capacity 



(31%); lack of professional competence (35%); use of 

restraint (35%). 

Conclusions: Many staff members experience lack of 

resources as an ethical challenge, but also other 

challenges are mentioned frequently. Systematic 

ethics work is needed. In the nursing home 

implementation of ethics working including 

education and discussion groups shall be started. 



Professional’s Wishes for the Implementation 

of Ethics Support - Are they Different between 

Primary Care and Specialised Palliative Care? 

Bollig G. 1 , Solvåg K. 2 , Sigurdardottir K. 2 , Nordstrønen Å. 2 , 

Rosland J.H. 1,2 



2 Haraldsplass Deaconess Hospital Bergen, Sunnica 

Clinic for Palliative Care, Bergen, Norway 

Research aims: Aim of the present study was to 

compare the professional’s wishes for the 

implementation of ethics support in Primary Care 

and specialised Palliative Care. In addition the 

importance of ethical problems as strain in everyday 

work was investigated. 

Materials and methods: Results from a previous 

pilot study with 52 health care personnel working in 

primary care (1) were compared to the opinions of 35 

professionals working in hospital based specialised 


Results: Most participants experienced ethical 

problems as a burden in everyday work in some 

degree (80% of participants from primary care versus 

58% from Palliative Care) or a large extent (19% 

versus 6%). A need to improve systematic ethics work 

in their workplace was stated by 96 % from primary 

care versus 94% Palliative Care. Participant’s wishes 

for measures to improve systematic ethics work were 

(primary care vs. palliative care): ethics guidelines for 

special situations (85% vs. 68%); meeting-places to 

discuss ethical challenges and problems (77% vs. 

73%); employee with special ethics competence (67% 

vs. 79%); ethics committee (33% vs. 68%); lawyer (4% 

vs. 15%). 

Conclusions: Most health care personnel want 

ethics guidelines and meeting places to discuss ethics 

and support from an employee with special ethics 

competence. An ethics committee seems to be more 

important for those working with specialised 

hospitalbased Palliative Care. Interestingly the staff in 

Palliative Care experiences ethical problems as burden 

to a lesser extent than those working in primary care 

including nursing homes. One possible explanation 

might be that Palliative Care staff is more used to talk 

about ethical challenges in their daily work. 

Literature: 1. Bollig G. Implementation of ethics 

support in nursing homes and primary care - what 

does health personnel want? (poster and lecture, 6th 

Research Congress of the European Association for 

Palliative Care in Glasgow 2010) 



Burnout in Palliative Care: An Ethical 

Perspective 

Pereira S.M. 1 , Fonseca A.M. 2 , Carvalho A.S. 3 , Teixeira 

C.M. 4 

1 Universidade dos Açores (University of Azores), 

Escola Superior de Enfermagem de Angra do 

Heroísmo (Nursing School of Angra do Heroísmo), 

Angra do Heroísmo, Portugal, 2 Catholic University of 

Portugal (Universidade Católica Portuguesa), Porto, 

Portugal, 3 Catholic University of Portugal 

(Universidade Católica Portuguesa), Institute of 

Bioethics (Instituto de Bioética), Porto, Portugal, 

4 Oporto Medical Center (Centro Hospitalar do Porto), 

Hospital de Santo António, Porto, Portugal 

Burnout refers to a loss of energy, which usually 

happens when the person feels “burned”, either in 

physical and psychological terms. A burned out person 

evidences signs of distress in his/her daily behaviour, 

and it turns to be almost impossible to function 

normally due to exhaustion. Repeated contact with 

suffering, dying and death and the need to face ethical 

challenges and dilemmas due to professional practice 

in palliative care may be stressful, demanding and a 

risk factor for burnout. Despite this fact, from a study 

conducted between September 2008 and July 2009, 

we realized that burnout levels in Portuguese nurses 

and physicians who work in palliative care teams were 

115 


(Thursday)


(Thursday) 


low. One of the main protective factors enounced 

during interviews and observations was an ethic of 

care in the relation professionals have with patients, 

relatives and also between professionals. 

Aims: 

(i) to build an ethical perspective of burnout syndrome 

in palliative care; 

(ii) to enounce the main ethical dilemmas considered 

by Portuguese physicians and nurses who work in 

palliative care; 

(iii) to reveal the ethic of care as a protective factor for 

burnout in palliative care; 

(iv) to consider the ethical principle of responsibility 

as a demand for burnout prevention. 

Results: Although burnout is commonly studied by 

psychologists, it seems clear that it has en ethical 

perspective in a triple dimension: first, due to its 

consequences, both for patients and relative as for 

professionals themselves; second, due to the ethic of 

care as one of the most relevant protective factors that 

contribute to avoid burnout; third, due to the ethical 

demand in order to develop active strategies that 

prevent burnout, which is simultaneously an 

individual, team and organizational responsibility. 

Conclusion: Our results structure an ethical view for 

burnout syndrome in palliative care, related to its risk 

and protective factors and also to the active 

prevention strategies used by palliative care teams. 



Ethical Dilemmas at the Intersection between 

Palliative Care and Emergency Medicine 

Heimerl K. 1 , Wegleitner K. 1 


Organizational Ethics, Wien, Austria 

Aims: It is the purpose of emergency medicine to save 

patients whose lives are endangered. Nevertheless 

emergency physicians are called regularly to patients 

in their homes or in nursing homes who suffer from 

palliative conditions and for whom prolonging life is 

not the goal. The paper aims at demonstrating, 

analysing and suggesting options for situations in 

palliative care, in which emergency doctors are 

involved and which constitute an ethical dilemma. 

Design and method: In our qualitative research we 

are regularly confronted with narratives of situations 

in which palliative care patients or their carers had to 

call an emergency physician. Three situations will be 

described, one in a nursing home and two situations 

that occurred in the home care setting. These 

situations will be analyzed with the help of a guidance 

that was developed by the authors and is used by the 

authors to facilitate case discussions. The guidance 

relies on the results of a prior research project on 

ethical decisions in nursing homes. It consists of the 

questions: 

1. What is the situation what are the facts? 

2. What are the emotions that are evoked by the 

situation? Who is concerned? 

3. What are the underlying paradoxes? 

4. What are the options for action? 

Results: The analysis yields a better understanding of 

the situations and its dilemmas. Very often the 

options do not consist in “a bad solution” and an 

“optimum solution” but the decision has to be made 

between “bad solutions” and “worse solutions” 

(Loewy). 

Conclusions: It can be shown that the dilemmas at 

the intersection between emergency medicine and 

palliative care cannot be resolved on an individual 

level by the physician involved. “Systemic” solutions 

on an organizational level, such as establishing 

cooperation between palliative care services and 

emergency medicine or implementing 

communication structures for decision making 

processes in nursing homes are required in order to 

successfully deal with the described situations. 



Knowledge and Attitudes of Medical Staff 

toward Advance Directives 

Saiz Cáceres F. 1 , Alonso Ruiz M.T. 1 , Cobián Prieto M. 2 , 

Rivas Mateo M. 3 , Valentín Tovar R. 1 , Redondo Moralo 

M.J. 4 

1 Hospital San Pedro de Alcáncara, Palliative Care 

Support Team, Cáceres, Spain, 2 Psycosocial Team La 

Caixa Foundation, Cáceres, Spain, 3 Hospital San 

Pedro de Alcántara, Pain Unit, Cáceres, Spain, 

4 Hospital Infanta Cristina, Palliative Care Support 

Team, Badajoz, Spain 

Research aims: To identify the knowledge and 

attitudes of medical staff toward advance directives 

(AD) in one health area. 

Methods: Design: A cross sectional, descriptive study 

by means of a self-administered questionnaire. 


Participants: Physicians of primary and specialised 

healthcare. 

Measurements and main results: A total of 

105(142) questionnaires were completed. The 

physicians staff surveyed scored their knowledge with 

a mean of 4.66 points (0 to 10 points). Only 72,4% 

knew about the legislation on AD, and only 27.6% 

had read the document. The physicians believed that 

planning and writing down one wishes about the care 

to be received was advisable (mean 8, 40). The 

physicians professionals considered AD to be a useful 

tool for health professionals (mean: 8,41) and for 

relatives (mean: 8, 38). The physicians surveyed 

would register their own AD at some point in their 

lives (mean: 8, 11). However, when the physicians 

were asked if they would do so in the next year the 

mean score dropped to 3,63. 

Conclusions: The physicians surveyed revealed a 

positive attitude toward the usefulness of AD s for 

patients’ relatives and for health professionals, as well 

as positive attitudes toward the use and respect for 

AD. Among these physicians willingness to register 

their own AD was high, but few intended to do so in 

the short term. The development and the 

implementation of AD, as any other innovation, 

should be carefully planned. If it isn’t done properly 

or it is done precipitately, it will not be understood 

neither the clients/patients nor the health 




End of Life and Interculturality 

Plassais L. 1 , Bloch-Keunebroek N. 1 , Aggoun A. 2 

1 Fondation Hopital Cognacq-Jay, Paris, France, 

2 CNRS, Paris, France 

Based on five clinical cases of muslim patients 

hospitalised in palliative care unit , we will begin to 

present the facility and its characteristics. In June 

1978, the hospital set up 58 beds dedicated to the 

patients in the final stages of terminal cancer, which 

replaces the maternity ward. This new program is 

rooted in a long history of care for the most needy, as 

well as the professional dedication of the medical 

teams. 

We will also explore the ethical and deontological 

issues posed by the patient, his family ans the 

institution´s medical team. We will develop the 

patient´s autonomy, the family´s role in the care, ans 

the triangular relationship of trust between the 

patient, the family and the carers. 

We will also talk about the patient´s wishes, or those 

of their family, to return to their country of origin and 

the necessary arrangements to the made. 

Finally, we will come to the subject of muslim views 

on approaching death. 

The conclusion will lead us to define the ethics of the 

negociation, wich is based on the clinical practice, at 

the heart of a therapeutic alliance between the 

patient, his family and the carers. 

We will focus on the hospitalised patient´s freedom in 

palliative care during the extent of development in 

this area. 



Knowledge and Attitudes of Nursing Staff 

toward Advance Directives 

Valentin Tovar R. 1 , Rivas Mateos M. 1 , Saiz Cáceres F. 2 , 

Cobián Prieto M. 1 , Alonso Ruiz M.T. 1 , Diaz Diez F. 3 

1 Hospital San Pedro de Alcáncara, Cáceres, Spain, 

2 Hospital San Pedro de Alcáncara, Palliative Care 

Support Team, Cáceres, Spain, 3 Hospital Infanta 

Cristina, Badajoz, Spain 

Research aims: To identify the knowledge and 

attitudes of nursing staff toward advance directives 

(AD) in one health area. 

Methods: Design: A cross sectional, descriptive study 

by means of a self-administered questionnaire. 


Participants: Nurses of primary and specialised 

healthcare. 

Measurements and main results: A total of 

110(194) questionnaires were completed. The nursing 

staff surveyed scored their knowledge with a mean of 

4.58 points (0 to 10 points). Only 52.7% knew about 

the legislation on AD, and only 30.9% had read the 

document. The nurses believed that planning and 

writing down one wishes about the care to be received 

was advisable (mean 8, 91). The nursing professionals 

considered AD to be a useful tool for health 

professionals (mean: 8, 31) and for relatives (mean: 8, 

79). The nurses surveyed would register their own AD 

at some point in their lives (mean: 8, 40). However, 

when the nurses were asked if they would do so in the 

next year the mean score dropped to 5.30. 

Conclusions: The nurses surveyed revealed a 

positive attitude toward the usefulness of AD s for 

patients’ relatives and for health professionals, as well 

as positive attitudes toward the use and respect for 

ADs. Among these nurses, willingness to register their 

own AD was high, but few intended to do so in the 

short term. Efforts should be made to improve nurses’ 

knowledge of AD and of the organizational process 

that allows these health professionals to introduce 

advance care planning as a specific task within 

nursing care. 

The development and the implementation of AD, as 

any other innovation, should be carefully planned. If 

it isn’t done properly or it is done precipitately, it will 

not be understood neither the clients/patients nor the 

health professionals. 



Ethics in End of Life 

Simões Â.S. 1 , Manso A.M. 1 

1 Hospital Amato Lusitano, Castelo Branco, Portugal 

In the environment of acute services, there are many 

ethical issues involved in facing the care of people 

who experience the process of death and dying. Much 

has been discussed on this theme and in particular the 

patient´s right to die with dignity, therapeutic 

obstinacy, euthanasia, autonomy and palliative care. 

In reality, what we see daily, is the application of futile 

and useless 

treatments, which leads to a slow and prolonged 

medicalized death, accompanied by suffering with 

little respect for human dignity. Given this, we 

decided to develop a descriptive, exploratory study 

using a questionnaire to health professionals in the 

service where we exercise functions. 

Objective - To learn the attitudes and problems of 

health professionals on ethical issues in end of life in 

an acute service. 

The results demonstrate the existence of difficulties in 

dealing with death often adopting attitudes of futility 

and obstinacy in treatment, insufficient or no 

information given to the ptient, poor control of 

symptoms resulting sometimes in a lonely death with 

a high degree of suffering, a clear disregard to human 

dignity. 

It is necessary to reflect on the degree of legal 

autonomy that a person has about the process of 

dying. Moving away from euthanasia, the concept of 

good death enables the person to self-determination 

and respect of the last moments of his life. The 

recognition of the autonomy of the person about 

these moments is essential to ensuring their dignity. 



The Therapeutic Alliance 

Plassais L. 1 , Fiusa T. 1 , Serrao D. 1 , Nunes D. 1 

1 Fondation Hopital Cognacq-Jay, Paris, France 

This task consists of analysing the clinical cases of two 

patients under palliative care, one in Lisbon and the 

other in Paris. 

Both the clinical cases presented challenge our pratice 

in terms of the role of our patients´ families: 

- On the one hand, in terms of possible effects on our 

therapeutic attitude 

- And on the other, in terms of influencing the 

caregiver/patient dialogue. 

The discussion focuses on nutrition and the patient´s 

understanding, or lack thereof, of the diagnosis and 

prognosis, in light of caregiver/patient, family/patient 

and caregiver conflicts. 

The idea is to discuss the attitudes of the caregivers, as 

based on their own values as well as on ethics. 

If we consider the patient´s comfort to be of greatest 

value, a therapeutic alliance becomes necessary, 

founded on ethics and anchored in humain 

companionship. An ethical viewpoint where is both 

the driving force and result. 




Ethical Considerations in Pediatric Cancer 

Mousavi S.R. 1 , Mousavi S.M. 1 , Mehdikhah Z. 1 

1 Shahid Beheshti Medical Sciences, Surgery, Tehran, 

Iran, Islamic Republic of 

Background and aim: In recent decades the 

improved treatment of childhood cancer has 

increased the proportion of children being cured. 

However, the intensive treatment required also 

implies a heavy burden for the children and their 

families. The purpose of this article is to judge the 

ethical considerations of different treatment regimens 

used for children with cancer. 

Methods: Ethical consideration is analysis based on 

the ethical model by Beauchamp and Childress. The 

assessment is based on every person, or group of 

persons, involved and is on the principles of 

autonomy, nonmaleficence, beneficence and justice. 

Results: The analysis shows that intensification of 

treatment of children with cancer is ethically justified 

from a deontological point of view. 

Conclusion: The consequences are more difficult to 

anticipate from a utilitarian perspective. 



Supportive Interventions for Caregivers of 

Dying Patients: A Novel Approach to Synthesis 

on Effectiveness 

Candy B. 1 , Jones L. 1 , Drake R. 1 , Leurent B. 1 , Tookman A. 1 , 

King M. 1 

1 Royal Free & University College Medical School, 


Context/aims: Family and friends caring for a 

patient in the terminal phase of a disease may need 

support. Despite evaluation it is unclear what types of 

interventions to provide support are more appropriate. 

The variety of interventions trialled and how each trial 

has assessed benefit makes interpretation of the 

evidence difficult. We have used a new 

methodological approach to categorise data in a 

systematic review of randomised controlled trials on 

the effectiveness of supportive interventions for family 

carers of patients in the terminal phase of a disease. 

Method: A Cochrane systematic review. We searched 

six citation databases. Key review stages were 

undertaken in duplicate. Our approach was to 

manage variety in trials by grouping into broad 

categories and pool evidence. Categories were: 

(i) trial interventions provided either directly to the 

carer or indirectly (e.g. via the patient) and 

(ii) whether outcomes related to emotional health (i.e. 

psychological distress, quality of life, or coping with 

caring), or to physical health. 

Results: 12 RCTs were identified. Nine evaluated 

direct interventions that commonly offered 

emotional support and aimed to improve coping 

skills. Three evaluated indirect interventions via 

patient support. In combined analyses of 5-8 trials of 

up to 934 participants, it was found that carers who 

received a direct intervention benefited more in 

improved emotional health than those in the control 

group. However, only for assessments of 

psychological distress was the benefit statistically 

significant (Standardised Mean Difference -0.19; 95% 

Confidence Interval -0.32, -0.06). 

Conclusion: Using this approach we could pool a 

range of differently reported evidence. We found that 

directly delivered supportive interventions may help 

buffer carers from psychological distress. Further 

research should explore in more detail areas of specific 

benefit to inform design of supportive interventions 

for carers. 



Exploring and Prioritising the Support Needs 

of Older Carers of People with Advanced 

Cancer: A Partnership Approach to Research 

Kennedy S.M. 1 , Seymour J.E. 1 , Bird L. 2 , Cox K. 2 

1 University of Nottingham, Sue Ryder Care Centre for 

Palliative and End of Life Studies, Nottingham, 

United Kingdom, 2 University of Nottingham, School 

of Nursing, Midwifery and Physiotherapy, 

Nottingham, United Kingdom 

Background: Carer breakdown often leads to crisis 

hospital admissions of the dying. To make people’s 

preference to die at home feasible, carer support must 

improve. This study aims to facilitate improvements 

in support for older carers through involving carers as 

partners in the research process. 

Method: Stage One: 34 older people (56-82 years) 

with experience of looking after someone with 

advanced cancer were recruited to attend one of five 

discussion workshops (N=29) or an interview (N=5). 

Participants discussed their experiences of care-giving 

and support, and which support services need 

improving as a priority. 

Stage Two: Fieldwork participants were invited to stay 

involved in carer-related research. 19 expressed an 

interest: of these, ten have attended a research course 

to enable them to work as research partners in 

activities that suit their skills and interests. The others 

have been invited to stay involved more informally. 

Results: Analysis reveals generally profound but 

contrasting experiences of caring for someone with 

advanced cancer and of receiving support. Highly 

valued types of support include emotional support 

and regular communication with friends, family and 

health professionals, and opportunities for breaks. 

Often, these types of support were lacking or 

unavailable to those who had largely negative 

experiences. Despite different experiences, 

participants decided collectively that as a group, 

elderly carers’ top support needs are routine health 

checks/prompt health care; tailored and timely 

practical help; assistance with form-filling, and more 

accessible and reliable (not IT-based) information. 

Conclusion: The carers’ reasons to stay involved vary. 

The research partners include people with diverse care 

experiences: for some, involvement provides a way to 

use their negative experiences to influence the 

development of better services, for others it provides a 

way to repay providers for the good support they 

received and push for improvements elsewhere. 



A Support Group Programme for Family 

Members of Persons with Life-threatening 

Illness 

Henriksson A. 1 , Andershed B. 1 , Benzein E. 2 , Ternestedt B.-M. 3 

1 Örebro University, School of Health and Medical 

Sciences, Örebro, Sweden, 2 Linneaus University, 

Växjö, Sweden, 3 Ersta Sköndal University College, 

Stockholm, Sweden 

Introduction: Patients with life-threatening illness 

often have a great need for support and practical 

assistance from their family members. Studies show 

that family members can be even more stressed than 

the patient. In an intervention family members were 

invited by the caring team to take part in a support 

group programme during ongoing palliative care. The 

group met for an hour and a half a week for six weeks, 

and each meeting had a special theme with a 

professional guest invited from the caring team. 

Aim: Two studies have been conducted aiming to: I) 

describe family members’ experiences of taking part 

in the support group programme and the subsequent 

impact on their lives and, II) describe participants’ 

experiences of content, structure and approach of the 

support group programme. 

Method: In study (I), qualitative interviews were 

chosen as the data collection method and ten people 

were interviewed after participation in the support 

group programme. The analysis was inspired by 

phenomenological method. In study (II), 29 family 

members were telephone interviewed after taking part 

in the programme. Qualitative content analyses were 

used. 

Result: By taking part in the support group family 

members experienced confirmation, insight into the 

gravity of the illness, sense of belonging created by 

similar experiences, participation in the care system, 

being able to rest, and strength to provide support for 

the patient. All together this resulted in a sense of 

safety. The programme was experienced to cover 

topics of immediate interest reflecting their lives with 

severely ill persons. The structure of the programme 

was found to be inviting, offering an opportunity to 

establish relationships with other participants and the 

caring team. The support group programme 

emphasized an open minded approach that 

contributed to a warm atmosphere. 

Conclusion: Family members experienced support 

in the support group and the participation provided 

relief in their day to day life. The results indicate the 

importance of the health professionals inviting and 

interacting with the family members of persons with 

life-threatening illness during ongoing palliative care 

and could inspire nursing staff to initiate, develop and 

deliver such interventions 





Meaning in Life in Relatives of Palliative Care 

Patients 

Brandstätter M. 1 , Kögler M. 1 , Borasio G.D. 2 , Fegg M. 1 


of Palliative Medicine, Munich, Germany, 2 University 

of Lausanne, Centre Hospitalier Universitare Vaudois, 

Lausanne, Switzerland 

Background: A life threatening illness of a relative 

poses an enormous burden on families. The 

experience of meaning in life (MIL), perceiving one’s 

life as significant and purposeful, can be jeopardized 

in such a crisis. 

Aims: To what extent do relatives of palliative 

patients experience their lives as meaningful, and 

what are relevant areas for MIL? Are there differences 

when compared to a sample of healthy adults? 

Method: Relatives of palliative care patients involved 

in a randomized-controlled trial of a 

psychotherapeutic group intervention completed the 

Schedule for Meaning in Life Evaluation (SMiLE). In 

this instrument, respondents first list individual areas 

that provide meaning to their life before rating their 

current level of importance and satisfaction with each 

area. Overall indices (range 0-100) of weighting (IoW), 

satisfaction (IoS), and weighted satisfaction (IoWS) are 

calculated. Data were compared to SMiLE data from a 

representative survey of the German population. 

Results: 105 participants (73.3% female, age 

54.5±13.7 years, 60.5% partners) completed the 

SMiLE at pre-intervention. At this point, 70.5% had 

become bereaved. Relatives named 5.1±1.6 meaning 

areas. The IoS is 67.9±19.1, the IoW is 75.2±14.3, and 

the IoWS is 68.3±19.3. All three SMiLE indices are 

significantly lower than in the German representative 

sample, however, relatives name more areas relevant 

to their MIL (all p< .001). When compared to the 

representative sample, relatives of palliative care 

patients are significantly more likely to name partner, 

friends, nature, and altruism as meaning providing 

areas, and less likely to name health (all at least p< .05 

after Bonferroni correction). 

Conclusions: Losing a loved one is a significant 

threat to a person’s experience of MIL. Loss of MIL 

concurs with maladaptation. Interventions for 

relatives targeted at meaning reconstruction during 

palliative care and bereavement are needed. 

Funded by German Cancer Aid. 



An Exploratory Test/Retest Two Group 

Comparison to Investigate the Effect of the 

Macmillan Approach to Weight Loss and 

Eating Difficulties (MAWE) on Weight- and 

Eating-related Distress in Carers of People 

with Advanced Cancer 

Hopkinson J.B. 1 , Addington-Hall J.M. 1 



Background: Up to 80% of people with cancer 

experience involuntary weight loss and difficulty 

eating. These symptoms of cancer cachexia syndrome 

can cause greater distress in carers than patients. Little 

is known about how to mitigate cachexia-related 

distress in carers. The Macmillan Weight and Eating 

Studies (2000-2008) have developed the first 

psychosocial intervention for weight- and eatingrelated 

distress in people with advanced cancer and 

their carers: The Macmillan Approach to Weight and 

Eating (MAWE). 

Research aim: To observe weight- and eatingrelated 

distress in carers of patients with advanced 

cancer supported by a nurse delivered psychosocial 

intervention, MAWE, compared to a control group 

receiving usual care. 

Methods: The study was a test/retest two group 

comparison, nested in a Phase II cluster trial of MAWE 

conducted in 2006-2007. It used mixed methods to 

compare a group of carers exposed to MAWE (n=12), 

with a control group who received usual care (n=14). 

The aim of the MAWE trial was to test feasibility, the 

acceptability of MAWE and to investigate its effect on 

patients. The nested carer study examined the effect 

of MAWE on carers using descriptive statistics and 

thematic analysis of qualitative data. 

Results: MAWE was observed to improve measures 

of weight- and eating-related distress in carers and to 

be perceived as helpful. No carer supported by MAWE, 

whereas 4/14 in the control, became more distressed 

about the patient’s weight during the study period. 

117 


(Thursday)


(Thursday) 


Analyses indicate that MAWE does not exacerbate 

weight- and eating-related distress and may help 

carers living alongside patients with cancer cachexia 

through the provision of information and support of 

self-management. 

Conclusion: The observed beneficial effects warrant 

further investigation of the potential for MAWE to 

mitigate carer cachexia-related distress. 

Funder: Macmillan Cancer Support 



Influence of Greek Families in Oncologic 

Patients: A Survey in Two Regional Hospitals 

Konstantis A. 1 , Exiara T. 1 , Risggits A. 1 , Michailidou A. 2 , 

Gidaris E. 1 , Akritidou M. 1 , Mporgi L. 1 , Papanastasiou S. 1 

1 General Hospital of Komotini, Department of 

Internal Medicine, Komotini, Greece, 2 General 

Hospital of Drama, Department of Internal Medicine, 

Drama, Greece 

Introduction/aim: An oncologic patient needs 

information on diagnosis in order to make decisions 

about the treatment plan and be prepared about the 

disease. In some cases cancer patients do not want or 

seek information about their condition beyond that 

volunteered by their physicians and in some other 

their family determines patient’s knowledge about 

the disease. The aim of this study was to investigate 

the influence of the family in oncologic patients and 

their access to information. 

Methods: 68 relatives of cancer patients and 50 

doctors of clinical specialties were interviewed 

consecutively and anonymously by physicians using 

a standardized questionnaire, during the last threemonth 

period in two regional Greek hospitals 

(General hospital of Komotini, General hospital of 

Drama). The questionnaire comprised 10 items 

regarding demographic data and management of the 

information related to oncologic patients. Answer 

options for all questions consisted of yes or no. 

Results: 59(86,76%) persons mentioned that have 

hide part of the information about disease’s progress, 

57(96,61%) answered that they try to support 

emotionally the patient with this way and 

63(92,64%) that they don’t fill confided to talk about 

the disease with the patient. 44(88%) doctors prefer to 

deliver bad news to patient’s relatives, 39(78%) allow 

family to determine patient’s knowledge about the 

disease and 21(53.84%) of them consider this to be 

wrong. 

Conclusions: The survey revealed the fact that in 

many cases the family deprives patients from the 

whole truth and decision making about the disease. 

Doctors in some cases are supporters of this wrong 

attitude. Possible solutions are: 

1. Information campaign 

2. Specialized personnel dealing with these issues 

3. Development and publication of regional 

guidelines in delivering bad news. 



‘Side by Side’ the Effect Hospice at Home 

Service upon Community Health 

Professionals 

Jack B. 1 , Groves K.E. 2 , Baldry C.R. 3 , Gaunt K. 4 , Sephton J. 3 , 

Whelan A. 1 , Whomersley S.-J. 5 

1 Evidence Based Practice Research Centre, Faculty of 

Health, Edge Hill University, Ormskirk, United 

Kingdom, 2 West Lancs, Southport & Formby 

Palliative Care Services, Queenscourt Hospice, 

Southport, United Kingdom, 3 Queenscourt Hospice, 

Southport, United Kingdom, 4 Royal Liverpool and 

Broadgreen University Hospital Trust, Liverpool, 

United Kingdom, 5 Southport and Ormskirk Hospital 

NHS Trust, Southport, United Kingdom 

Background: Promoting the choice to die at home 

is central to UK policies and strategies and supporting 

this are Hospice at Home services of which there are 

variations in service composition and intervention. 

An innovative service comprising 3 elements of: 

accompanied transfer home; multi disciplinary 

(including doctors) crisis intervention team and a 

flexible sitting service) was developed in the North 

West of England following consultation and piloted 

for 1 year. 

Aim: To investigate the perception of an innovative 

‘Hospice at Home’ service on community health care 

professionals 

Method: As part of pilot evaluation 55 Health Care 

Professionals (General Practitioners, District Nurses, 

Community Specialist Palliative Care Nurses and 

Hospital Discharge Coordinator) who had experience 

of the service participated in semi-structured 

interview, focus groups and electronic open end 

questionnaires. Interviews were digitally recorded and 

thematically analysed, open ended questionnaires 

were subject to content analysis. 

Results and discussion: All but two respondents, 

reported on the positive impact of the service on 

themselves, in being able to provide additional 

support for the patients and the families. Additionally 

the access to specialist palliative care input as well as 

advice was positively regarded as complementing the 

care they were able to provide. One GP raised the issue 

that this service could potentially result in GPs 

abdicating their responsibility for palliative care 

patients and resulting in them becoming de-skilled. 

Conclusion: This novel supplementary palliative 

care service, was found to have a positive impact on 

the health care professionals interviewed. They also 

felt that it had a helped them to support patients and 

families whose preferred place of care was home. 



Perception of Family Functioning in Families 

of Palliative Patients 

Kühne F. 1 , Krattenmacher T. 1 , Romer G. 1 , Möller B. 1 

1 University Medical Center Hamburg-Eppendorf, 

Department of Child and Adolescent Psychiatry and 

Psychotherapy, Hamburg, Germany 

Aims: In palliative situations, not only patients are 

affected by psychosocial demands and burdens, but 

the whole family system. Adolescent children in 

particular have to cope with a quantity of diverse 

demands in the family context. On one side, they are 

in a developmental phase that is characterised by 

detachment and increasing independence. On the 

other, they often help with doing the housework, 

look after younger siblings or care for the ill parent. 

Sometimes parentification affects age-appropriate 

behaviour. Therefore, the current study highlights 

family functioning in families of palliative patients: 

· How is family functioning described by well parents 

resp. adolescent children? 

· Which variables on individual and family level 

predict family functioning in those families? 

Design, methods and statistics (if applicable): 

Multicenter study including cancer families making 

use of well-established preventive counselling. Crosssectional 

data collected before the beginning of 

counselling (t1) at one of eight study centres 

throughout Germany. Family functioning is 

measured by Family Assessment device FAD. 

Predictors are mental health (HADS, SDQ), 

sociodemographic, illness- and family-related 

variables. Statistic analysis by SPSS 18, descriptively, 

via t-tests for dependent samples and regression 

analysis. 

Results: Due to ongoing data collection, data 

gathered until 31th Jan 2011 (key date) will be 

analysed. Perspectives of parents and their adolescent 

children are contrasted and predictors of family 

functioning presented. 

Conclusion: Still, the family perspective is not 

considered systematically in palliative care. Although, 

predictors for family functioning in families of 

palliative patients may affect interventions like 

preventive counselling for the whole family system. 

The study is funded by the German Cancer Aid 

(Deutsche Krebshilfe). 



Analysis of the Family Caring Potential (PCF) 

in a Palliative Care Unit 

Soler Labajos E. 1 , Limonero J.T. 2 , Viel S. 1 , Arenas O. 1 , 

Soriano D. 1 

1 Consorci Sanitari del Garraf, Palliative Care Unit - 

EAPS, Sant Pere de Ribes, Spain, 2 Universitat 

Autònoma de Barcelona, Bellaterra, Spain 

Goals: To identify characteristics of the Family 

Caring Potential (FCP) to adjust the goals of 

psicosocial intervention. 

Procedures: Observational, descriptive and 

transversal study with 42 informal caregivers - 28 

women and 14 men, aged 56,48 in average 

(TD=12,68) - of palliative patients. There measured up 

characteristics of the family (adaptability, cohesion, 

satisfaction and family stress; affective tension, lack of 

organization in tasks, unexpected events and self- 

criticism) and of the primal caregiver (perceived 

competence, self esteem, style of confrontation and 

claudication) . 

All the variables were put in a correlation matrix, in 

order to identify the statistically significative with 

family claudication, and were classified into risks and 

protection factors of the FCP. A multiple linear 

regression analysis was performed, using the stepwise 

approach, with the family claudication being the 

dependant variable and other variables with 

significant correlation with family claudication being 

the independent variables. 

Results: Family cohesion and satisfaction, self esteem 

and perceived experience of the primary caregiver are 

protective factors of the FCP. Family stress, affective 

tension, lack of organization in tasks, unexpected 

events and self-criticism are risk factors of the FCP. The 

regression analysis indicates that, the bigger the lack of 

attention and lack of organization in tasks, the bigger 

probability of claudication; the more perceived 

experience, the lower probability of suffering 

claudication. The first variable is a risk factor, while the 

second variable is a protection factor of the FCP. 

Frequency Percentage Valid Cumulative 

percentage percentage 

Cohesion Enmeshed 9 21,4 21,4 21,4 

Connected 17 40,5 40,5 61,9 

Separated 11 26,2 26,2 88.1 

Disengaged 5 11,9 11,9 100 

Flexiblity Chaotic 26 61,9 61,9 61,9 

Flexible 11 26,2 26,2 88,1 

Structured 3 7,1 7,1 95,2 

Rigid 2 4,8 4,8 100 

[Family types (Olson’s circumplex model)] 

Conclusions: It is necessary to design psicosocial 

interventions focused on increasing the perceived 

experience of the primary caregiver and also on 

organizing the informal care tasks so that family 

collaborative work satisfies all members of the system. 

It is also important to prepare the teams for 

unexpected events to minimize their impact. 



´Better Together´ Carers Programme 

Lawless S. 1 , Townshend B. 1 

1 Saint Francis Hospice, Family Support Services, 

Romford, United Kingdom 

Carers of palliative patients will often put their needs 

second to those for whom they are caring, but we 

know that their needs are great. Rapid changes in 

patients´ condition and the emotional and 

relationship changes this brings are hard, requiring 

constant adaptation and emotional resilience. 

The ´Better Together Carers Programme´ was 

developed in consultation with carers, as a structured 

weekly programme over 10 weeks, with aim to bring 

support and education to carers. Each 2 hour session 

was facilitated by two qualified, experienced Palliative 

Care Social Workers, to promote a safe and stable 

environment for carers to build relationships with 

each other and the facilitators. 

The sessions offered: 

• An informal ‘check in’ from all. Including the 

facilitators. 

• An invited speaker to give carers practical 

advice/signposting, and also tools to aid them in 

their caring role, in areas such as: 

Accessing practical supports 

Benefits advice 

Simple complementary therapy massage and 

relaxation techniques 

Nutritional advice - for patient and carer 

Creative therapies 

Managing difficult and crisis situations 

Self care 

• Social time with refreshments, allowing space to 

build relationships and peer support networks 

• An informal ‘check out’ at each session end 

The final session took the form of a candlelit supper 

for both carer and cared for person; this provided a 

positive ending to the course and also affirmed the 

value of the carer´s role. 

Evaluation showed carers had gained greater 

confidence and skills in their caring role, had 

improved knowledge of resources available and had 

set up informal ‘buddy’ systems, which had improved 

their psychological well being. They valued the 

balance between information and emotionally 

charged discussion/ sharing and social time/checking 

in and out chat, which gave opportunity and 

permission to be light hearted and sociable. For them 

it made a real difference in being able to cope and we 

feel this to be an important model to share. 




Social Intervention in an Palliative Care 

Hospital Team - The Primacy of Social 

Workers Care 

Pedro Ramos Cortês A.S. 1 , Almeida J. 1 

1 Centro Hospitalar de Lisboa Norte, EPE - HSM - 

Servic. Social - Unidade de Medicina Paliativa, Lisboa, 

Portugal 

Aims: Main objective: improving the intervention of 

social work in palliative care hospital team; specific 

objectives: validate the need of evaluation by the 

social work in a1st approach; check the patients and 

families opinions, about the appropriateness of 

continued intervention, by the same social worker 

(SW) during the period of hospitalization. 

Study design and methods: Duration: 4 months. 

Techniques: interview; database; questionnaire.In the 

1st month, the SW was present along with the doctor 

and nurse in the 1st approach to the patient, 

developing a social evaluation.That evaluation was 

done during the remaining time, also 2 issues have 

been applied to patients and families to validate the 

proposed objectives. Answers were based on a “Likert” 

scale. 

Results: The sample consisted in 20 patients, where 

the prevailing age was 60-70 years and the main 

clinical diagnosis was cancer; Major social diagnoses: 

elderly caregiver, non-use of resources; caregiver 

unavailable, inadequate income.Major social replies: 

information/guidance on rights/duties; home help 

service; referral to palliative care units.Regarding the 2 

issues mentioned above, only 19 had ability to answer 

to those questions.To 18 patients, the SW evaluation 

at the 1st consultation was considered very 

important, and important for one patient;The 

answers always pointed to the meaning of a 

continued presence by the same SW when they 

needed hospitalization.Likewise 17 families were 

interviewed and answered always very important, and 

refer again to the continuity of the same SW while 

hospitalization. 

Conclusion: The integration of SW in a full-time 

team, is very relevant, as demonstrated in this study, 

wich also wants to demonstrate the added value of 

that interaction.This study shows anticipation and 

active participation as primary promoters of quality of 

life, for patients and caregivers. 



Predicting the Hospital, Community and 

Informal Costs of Progressive Multiple 

Sclerosis 

Higginson I.J. 1 , Goh G. 1 , McCrone P. 2 



Kingdom, 2 King’s College London, Institute of 

Psychiatry, London, United Kingdom 

Little is known about the formal and informal costs of 

multiple sclerosis for those individuals who are most 

severely affected. Our aims were to describe the details 

of care costs for patients with advanced MS and seeks 

to identify cost predictors. We studied 52 people in 

the South of England who were severely affected by 

MS. Data was collected using face to face interviews, 

usually in people’s own homes using standard 

questionnaires about services used and informal care 

in the previous three months, and disability and 

palliative outcomes. All but one patient had either 

primary or secondary progressive MS. The mean EDSS 

score was 7.8; no patient had an EDSS of less than 5.5 

and the highest EDSS score was 9.5. Informal care 

costs accounted for almost half of the total costs. 

Costs were higher for those with most disability, as 

measured with the UNDS or the EDSS. Compared to 

patients with EDSS scores of 5.5-6.5, these with scores 

of 8/8.5 and 9/9.5 had significantly higher informal 

care costs (p=0.014 and 0.006 respectively). Mean 

total costs doubled between EDSS 8/8.5 and 9/9.5. 

Patients with illness durations of 11-20 years had 

significantly higher informal care costs than those 

with durations of 10 years or below (p=0.037). In 

those most severely affected by MS formal and 

informal costs rise greatly with advanced disability 

and after 10 years of illness. 



Family Conference: Assessment of Family 

Satisfaction 

Aparicio M. 1,2 , Guedes A. 1,2 , Simões A. 1,2 , Paiva C. 1,2 , Abril 

R. 1,2 , Neto I. 1 

1 Hospital da Luz, Lisbon, Portugal, 2 The Catholic 

University of Portugal (UCP), Institute of Health 

Sciences, Lisbon, Portugal 

Introduction: The Family Conference (FC) is a 

structured family intervention in palliative care (PC), 

with a plan previously agreed by the professional 

members of the health care team, which deals with 

the sharing of information and feelings. 

In the PC unit, where the research team proposes to 

do this study, we recognize the empirical importance 

of FC in the family satisfaction. However, after an 

extensive review of the literature, we have 

encountered difficulties in the evaluation of 

satisfaction. For this reason we understand the study 

in this area to be relevant and the results useful to 

improve the provided care and quality of life of both 

patients and family. 

Research objectives: 

- Characterizing the family satisfaction following 

completion of the FC 

- Characterizing the FC 

Study design and methods: This is a crosssectional, 

observational and descriptive method, by 

applying a self-administered questionnaire to all 

family members present in FC, with closed questions 

aimed at assessing their satisfaction using a Likert 

scale and an open question (candidates). This 

questionnaire will first be subject to validation by 

experts in the field of PC, undergoing a pre-test with 

10 relatives and after the necessary revision will be 

applied to a total of 100 family members. The 

technique is simple random probability. Eventually 

the data will be pies by using the SPSS statistic 

analytical as well as analysis of content to an open 

question. Data on the characteristics of the FC 

gathered in a separate document, will also be analyzed 

(duration, actors, content covered), and crossed with 

the assessment of satisfaction. 

Results: In this phase we are close to validating the 

instrument for data collection. 

Conclusion: In conducting this research work the 

team expects to be able to describe the satisfaction of 

the family against the FC to improve the excellence of 

provision of PC to the patient and family. 



Children in Need! Supporting Families with 

Children Facing Loss 

Baldry C.R. 1 , Meehan A. 1 




Background: A study day ‘Supporting children 

facing loss’ was initially aimed at teaching staff in 

local schools but now attracts participants from 

hospices, schools, colleges and pastoral workers from 

across north west UK. 

Additionally many enquiries are received from 

bereaved families & family doctors seeking help but 

there is little available locally & long waiting lists (6 

months) exist. Although individuals may address the 

needs of some children, there is no coordinated 

system between schools, families, hospice to support 

children & no responsive service for families either 

before or after bereavement. 

Aim: 

1. To assess current recognition & assessment of 

children’s needs. 

2. To review available health & schools services & 

support for children. 

Method: An online survey of Palliative Care Services 

ascertained how & when the needs of children were 

assessed & where this information was recorded. A 

retrospective audit of 40 patient records sought 

evidence of assessment of children’s needs. A 

questionnaire was circulated to all local schools 

asking what is in place for children facing loss or 

bereavement. Local area enquiries determined what 

services were currently available. 

Results: Results show a lack of consistency & 

variation in the place of recording children’s needs. It 

seems that needs of young children with ill parents 

are better recorded than those of other child relatives. 

Schools vary in their readiness for attending to the 

needs of children facing loss & there are few services 



available locally. 

Conclusion: Clearly, a responsive & coordinated 

approach to meet the needs of families with children 

facing loss is needed. A skilled coordinator could meet 

with families, children & schools, & develop a 

resource pack for use by health professionals. 

Improvement in the assessment & recording of the 

needs of children in families known to the palliative 

care service is required. 



Parkinson’s Disease and Related Neurological 

Conditions: Assessing Family Carer Burden 

Using Zarit Burden Inventory 

Saleem T.Z. 1 , Higginson I.J. 1 , Martin A. 2 , Chaudhuri R. 2 , 

Leigh N.P. 3 



College Hospital, Neurology, London, United 

Kingdom, 3 King’s College London, Clinical 

Neuroscience, London, United Kingdom 

Background: There is a recognition in the literature 

that PD and related neurological conditions can put a 

lot of strain on spouses or family carers especially in 

the advanced stages of disease. Caregiver burden 

refers to people’s emotional response to changes and 

demands of giving support to another. 

Aims: To assess carer burden of family carers looking 

after partners with advanced Parkinsonism living at 

home. 

Methods: Fifty five carers looking after patients at 

home with PD, MSA and PSP were recruited from a 

specialist neurology hospital. A range of 

questionnaires were administered face to face by 

researcher including the Zarit burden Inventory. This 

assesses the degree to which family caregivers perceive 

that their responsibilities have adverse effect on their 

lives. Each item was scored on a 5-point response 

format from 0 (never) to 4 (nearly always). The total 

individual burden score was determined by summing 

the scores from all 12 items for a score range from 0 to 

48. A higher score indicates greater carer burden. 

Results: Nearly all carers felt stressed in their caring 

role 90.9%, out of these 40% frequently. Most 81.8% 

social life suffered (41.8% frequently). Majority 87.3 % 

did not feel had time for them self (38.2 % frequently). 

Most felt strained 85.5%. Many felt they had lost 

control of their life 65.5% (27.3% frequently). Felt 

angry 80% (47.2% frequently). Many felt uncertain 

what to do, 67.3%. Over half carers health had suffered 

due to caring role, 56.4%. Many carers said they had a 

health problem themselves, 65.5%. Out of these 

29.1% said their health problem affected how they 

could look after the patient. The total mean Zarit score 

was 18.5 (S.D = 9.2) suggesting high carer burden. 

Conclusions: Families looking after people with 

advanced Parkinsonism are under a lot of stress in 

looking after their loved ones at home. Neurology and 

palliative care services could support families by 

developing interventions that help carers in their 

caring role. 



Impact of Social Networking for 

Hospitalization in Palliative Care Patients 

Buentzel H. 1 , Buentzel J. 2 

1 Municipal Hospital Nordhausen, Palliative Care 

Unit, Nordhausen, Germany, 2 Municipal Hospital 

Nordhausen, ORL, Head Neck Surgery, Nordhausen, 

Germany 

Objective: We have analyzed all patients who had 

entered the palliative care unit (PCU) regarding social 

networking, religiosity and medical diagnosis in order 

to evaluate the role of both non-medical factors for 

palliative hospitalization. 

Materials & methods: We included all in-doorpatients 

of a defined time interval. The data pool was 

retrospective filled according the patient’s individual 

data file. Religiosity was registered by the admittance 

personal during the check-in procedure of the patient. 

Social networking was estimated by the staff of PCU 

according a two dimensional model. Horizontal 

networking described the main social bindings within 

the own generation. Vertical networking described 

the main social bindings between generations. 

Results: Between 01-01-2010 and 30-09-2010 249 

patients were treated at our department. 232/249 

suffered from cancer disease (77 head neck cancer, 87 

GI cancer, 30 brain tumours, 40 urogenital cancer), 11 

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had progressive neurological diseases. We have 

treated more male patients (male : female = 59 : 31). 

The median age was 49 years (range 21-98). 14% of 

our patients had registered their membership in an 

official church (e.g. religiosity). But the patients 

demanded spiritual help by priest / psychologists 

during every third stay (31%). The more vertical social 

networking (children, parents) was registered in 30%. 

Horizontal networking (partner, friends) was seen in 

50%. 20% of our patients hadn’t had any private 

social networking. Gender-specificity was seen in 

religiosity and social networking. Male patients had 

shown less religiosity and social networking between 

the generations. 

Conclusions: Religiosity and social binding between 

the generations (vertical network) seem to be two 

gender-specific factors helping female patients in 

avoiding admittance to PCU at the end of their life. 



Family as the Unit of Care in Palliative Care 

Chaves A.R.D.M. 1 

1 Instituto Nacional de Câncer, Hospital de Câncer IV, 


Objective: This article aims to reflect on family 

participation in care for patients with advanced 

cancer experience from the Cancer Hospital, Rio de 

Janeiro. The questions about the role of caregiver in 

the care process were presented and analyzed in this 

study exposing the contributions to the debate in 

oncology and health in general and for allowing 

inserting the discussion in the broader context of 

Brazilian society. Discusses the participation of 

caregivers, mostly family members in providing care 

to patients with advanced cancer. 

Method: The methodology used was the qualitative 

and quantitative approaches - with literature review, 

participant observation and analysis of research 

conducted at the institution with the caregivers of 

patients with advanced cancer. 

Result: As a result of the research found that most 

caregivers are women, caregivers assume 

responsibility for care, even if they are suffering 

because of the possibility of losing their loved one 

sick, mainly due to the affection and solidarity to the 

patient and the moment experienced by this and his 

family. 

Conclusion: Thus, it is clear that the family should 

become a benchmark in social programs, giving it a 

new place, with higher political visibility. The family 

should be included and supported by the departments 

of public health system and incorporated as a user of 

these services across health and social programs in 

view of its primary role with patients suffering from 

chronic degenerative disease, evolving, and the 

repercussions of caring for a sick person and family. 



Care at Home: Knowledge, Challenges and 

Support Provided by Nurses to the Caregivers 

of Dependent Patients 

Marques R.M.D. 1 , Dixe M.D.A. 1 

1CHLN; Universidade Católica Portuguesa, Lisboa, 

Portugal 

Background: Caregiving demands the acquisition 

of knowledge and abilities by the family, in order to 

allow them to perform different tasks that go beyond 

the satisfaction of the AVD’s. So, health professionals, 

have an important role transmitting the proper 

information. 

Aims: Determine the level of knowledge and 

difficulties of the caregivers, as well as to know the 

support provided by nurses in domestic context. 

Methods: In this descriptive-simple study, we’ve 

applied an interview to a non-probabilistic sample of 

107 dependent sick persons caregivers, who went to 

the urgency department of a Central Hospital in 

Lisbon. 

Results: The results showed that 50.5% (54) of the 

readmitted patients were female, with an average age 

of 67.5 years (s=19) which does not meet with other 

studies reviewed. Regarding the level of dependence, 

71.0% (76) of the patients had a severe dependency 

and 29% (31) moderate. Caregivers were mostly 

women, who perceive their health as very weak, 

57.9% reported to be the sole caregiver and 61.7% 

admitted not having had previous experience in 

providing care. As to the support of nurses at home, 

68.2% of caregivers say they not receive their help at 

home. However, the vast majority of the ones who are 

visited said that they had enough knowledge about 

the provision of direct care to the dependent patient, 

illness and medication. As for the difficulties and 

needs of the caregivers, all reported difficulties in 

caring for the dependent and sick person, as well as 

they reported that they needed more information 

regarding the level of satisfaction of basic human 

needs, disease symptoms, progression and prognosis 

corroborated by Driscroll, 2000; Mendonca, Martinez 

& Milheiras, 2000; Shyu, 2000; studies. 

Conclusion: Lack of information, was the major 

difficulty referred by caregivers, which means that 

nurses have a crucial role to prepare the home return 

and the acquisition of caring knowledge. 

Keywords: Caring. Needs. Difficulties. Informal 

Caregivers 



Multidisciplinary Perspectives on 

Involvement of Family Members of 

Terminally Ill in Complementary Therapy Use 

Wenzel C. 1 , Heller A. 1 

1 Alpen-Adria-Universität Klagenfurt Graz Wien, 

Faculty of Interdisciplinary Studies (IFF), Dep. of 


Austria 

Background and aim: Complementary therapies 

are widely used in palliative and end-of-life care. 

While a number of studies focus on the effects of 

complementary therapies on terminally ill, little is 

known about how family members are involved in 

complementary therapies in palliative care. This 

paper explores interdisciplinary perspectives on how 

family members of terminally ill are involved in and 

may benefit from complementary therapies provided 

in inpatient hospices in Germany. 

Method: In an exploratory study about 

complementary therapy use in hospice and palliative 

care, qualitative interviews (n=20) with 

multidisciplinary team members as well as focus 

groups (n=6) based in six inpatient hospices in 

Germany, were conducted. These were tape-recorded, 

transcribed verbatim and analysed using grounded 

theory methods. 

Results: Multidisciplinary team members describe 

different levels of involvement of family members in 

complementary therapies at the end of life: either 

complementary therapies are accessible to family 

members in the same way as to terminally ill, or there 

direct or indirect involvement occurs. Direct 

involvement takes place mostly within body based 

therapies offered by external therapists or nurses, 

where family members are told how to touch or 

massage their loved one. In aromatherapy practice, 

mainly offered by nurses, family members are 

involved indirectly. 

Conclusion: Team members experience 

complementary therapy use of family members or 

involving them directly or indirectly in 

complementary treatments of terminally ill as 

beneficial for themselves and their dying loved ones. 

Through a positive feedback loop the effects of 

complementary therapies on family members also 

benefit the dying. Furthermore, family members 

experience complementary therapy use as a 

possibility for self-care. 

The research project is funded by the Stifterverband 

für die Deutsche Wissenschaft. 



The Concept of Quality of Life Focused on the 

Family in the Pediatric Palliative Care 

Context: A Synthesis of Current Research 

Misko M.D. 1 , Santos M.R. 1 , Silva L. 1 , Rocha M.C.P. 1 , 

Rossato L.M. 1 , Bousso R.S. 1 


Paulo, Brazil 

The quality of life (QOL) of families that have a son in 

palliative care has been an area overlooked by QOL 

researchers until recently. The purpose of this study 

was to analyze how Family Quality of Life has been 

studied in palliative care area in the last twenty years. 

A methodological systematic review was carried out 

for the period 1990 - 2010 in accord with the Joanna 

Briggs Institute guidelines on systematic reviews.The 

selected studies were analyzed based on some 

evaluation criteria used in studies about Family 

Quality of Life: concepts and domains, used 

instruments and investigated population.Papers were 

reviewed critically using a tool developed to assess 

content and reviewers recorded open-ended 

comments on the strengths and weaknesses of each 

paper. Families correlate their QOL with the quality of 

care their children receive. In this sense, the control of 

pain is a key-element and the first concern of the 

families, who must be sure that all efforts are being 

rendered to manage this symptom and decrease the 

child’s suffering. Parents of children, receiving 

palliative care, have expectations regarding the health 

team, such as: necessity of establishing a connection; 

demonstration of competence and effort; exchange of 

information; availability and possibility to maintain a 

connection with their children.Cultural and spiritual 

beliefs and the family/social relationships are 

identified by families as topics that influence the 

maintenance of their QOL.This results reiterates the 

need for a comprehensive program that incorporates 

all aspects of care and family support, in the hospital 

and at home, from diagnosis to bereavement followup. 

Results provide a baseline for further research into 

the needs of these families, which is imperative for 

developing public policies and approaches to familycentered 

supports. There is a need to develop 

empirically robust and conceptually comprehensive 

quality of life measures, particularly in the context of 




The Needs of the Informal Caregiver of a 

Palliative Patient at Home in Flanders 

Waerenburgh C. 1,2 , Streffer M.-L. 1 , Van den Eynden B. 1,3 

1 University of Antwerp, Antwerp, Belgium, 2 Netwerk 

Palliatieve Zorg Noord-West-Vlaanderen, Bruges, 

Belgium, 3 Centre for Palliative Care, GZA, Wilrijk- 

Antwerp, Belgium 

Background: For palliative patients with an 

advanced disease wishing to die at home, the 

informal care giver plays an crucial role. 

Research question: How the role of the informal 

caregiver could be optimized? 

Methodology: For this qualitative research project, 

based on grounded theory, thirteen informal 

caregivers of a patient with a life-threatening disease 

at home, were selected for a semi-structured interview 

by the coordinators of two Flemish palliative regional 

networks. The interviewers ware not involved in the 

care of the patient or caregivers. 

These interviews were recorded digitally, then 

transcribed. After the transcription, researchers wrote 

a code book, by extracting topics from the interviews, 

using NVIVO 8. By means of the code book, an overall 

analysis was made. 

Results: After diagnosis therapy follows; sometimes 

this treatment becomes futile. It can feel redemptive 

when the treating physician has the courage to stop 

the therapy. 

An open communication between doctor and 

patients but also between caregivers feels like positive. 

The caregiver wants not to repeat everything, he does 

not want to play go-between. 

Small teams with less variation of caregivers were 

experienced as less intruding within the privacy. 

A good knowledge of the medical dossier and a good 

registration in the care dossier demonstrates interest 

for patient and environment. 

Transparency and clarity of the financial facilities 

makes these more accessible. 

Informal caregivers found it important they feel safe 

by knowing where they can find answers on their 

spiritual questions like expressing deep impotence 

while confrontation with the life-threatening, the 

letting go what is going to slip away, the wrestling 

with death and dying but also the giving and 

receiving the chance to look back and make a life 

balance. 

Conclusion: The informal caregiver is a member of 

the care team. Good care for the patient also means 

good care for the caregivers. 



Not too Young for Loss. Involving Children 

and Youngsters in Palliative Care 

Ruysseveldt I. 1 , De Lust A.-M. 2 , Vanden Berghe P. 3 , Dillen 

L. 4 , Janssen M. 5 

1 University Hospital Leuven Campus Gasthuisberg, 

Palliative Homecare Team for Children, Leuven, 

Belgium, 2 Flemisch Federation of Palliative Care, 

General Management - Staff Member, Wemmel, 


Belgium, 3 Flemisch Federation of Palliative Care, 

Director, Wemmel, Belgium, 4 Flemisch Federation of 

Palliative Care, General Management - Research 

Coordinator, Wemmel, Belgium, 5 Network Palliative 

Care Limburg, Coordinator, Hasselt, Belgium 

Introduction: Clinical practice and research show 

that the involvement of children and youngsters 

during the illness and the palliative process of a loved 

one is of upmost importance. A timely and adapted 

care for this (often) forgotten group is not only of 

essential importance for their grief process, but also 

for a healthy emotional development. Yet, involving 

children in this process is still a great taboo, even 

among professional caregivers. Therefore, the 

Federation of Palliative Care Flanders started a fouryear 

project that focused on the care for children and 

youngsters when a loved one is in palliation. 

Aim: The aim is to build expertise among 

professional bedside caregivers in the psychoemotional 

support of children and youngsters who 

are confronted with the imminent death of a loved 

one. This general aim falls apart in sensitization of, 

education of, and material development for 

professional caregivers. 

Method: The project consisted of two phases. A first 

phase focused on the state of the art regarding the 

theme by means of a comprehensive literature review, 

a stocktaking of existing initiatives in Flanders and 

the Netherlands, and a needs assessment in diverse 

settings of palliative care. Based on this stocktaking a 

mission statement was developed with a concrete 

roadmap. In the second phase the following seven 

deliverables were developed: a sensitization and 

information campaign, a website, a children’s book, a 

symposium for professional caregivers, a brochure for 

parents and professional caregivers, a training 

package for professional caregivers, and workbooks 

for children and youngsters. 

Conclusion: The project has resulted and still results 

in a slow but steady change in mentality and 

awareness of the importance to involve children as 

soon as possible when someone is ill. The success may 

be explained by the bedside origin of the project, the 

multidisciplinary composition of the workgroup, and 

the inclusion of the diverse palliative settings. 



Using Family’s Responses from a 

Questionnaire to Improve Clinical Practice in 

a Hospice 

Schampi E. 1 , Fahlström M. 1 , Rasmussen B. 2 

1 Axlagarden Hospice, Umeå, Sweden, 2 Umeå 

University, Umeå, Sweden 

To evaluate and develop clinical practice at a hospice 

in Northern Sweden we continuously solicit 

information from families about their experiences 

and suggestions for improving the quality of care at 

the hospice. To collect this information, we have, 

based on literature reviews, created a questionnaire 

consisting of 21 statements addressing families’ 

experiences of the quality of care provided to the 

decedent and themselves by the hospice. In the 

questionnaire Families Experiences of Hospice Care 

(FEHC), the family members are asked to respond to 

the statements on an ordinal scale ranging from 1 

(strongly disagree) to 5 (strongly agree). At the end of 

the questionnaire there are an open - ended question 

making it possible for the family to express their 

experiences in own words. 

During year 2009, the questionnaire was, for the 

fourth time, administered to 50 family members, of 

these 43 responded, three did not and four chose not 

to participate. 

The result showed that a clear majority (n = 30) was 

very satisfied with all aspects of care covered by the 

21statements. Five family members had negative 

experiences regarding access to physicians; four 

thought that a few nurses gave an impression of 

uncertainty; three felt that opportunities for 

conversations around difficult issues were too few, 

and a son found it to be the wrong action taken when 

his mother suddenly deteriorated. Our conclusion is 

that the questionnaire is a very good tool when 

evaluating families´ experiences of care at a hospice. It 

facilitates the identification of areas in need of 

improvement and is an important help in our 

ongoing development of the good end-of-life care. 

At the EAPC-conference, we will offer an Englishlanguage 

version of the questionnaire to interested 

parties. 

The study’s main source of funding has been The 

Foundation for Hospice care, Umeå, Sweden. 



The Comfort in Palliative Care - Implications 

of Patient Comfort in Family Comfort 


M.D.A. 4 

1 Instituto Politécnico de Leiria, Escola Superior de 

Saúde, Leiria, Portugal, 2 Catholic University of 

Portugal, Lisboa, Portugal, 3 Hospital Pulido Valente, 

Lisboa, Portugal, 4 School of Health Sciences 

Polytechnic Institute of Leiria, Health Research Unit, 

Leiria, Portugal 

Introduction: The goal of palliative care is to 

promote comfort for patients and families relieving 

pain, reducing anxiety, providing calm environment 

and supporting families in the dying process, for them 

to find meaning in the experience. Comfort can be 

obtained at the level of relief - meeting comfort needs; 

Ease - state of calm / contentment, and 

Transcendence - state in which one can rise above 

pain or problems (Kolcaba, 2003). 

Concern for the comfort of the loved one is common 

to caregivers of patients in end-of-life, but the 

literature is unclear regarding the relationship 

between patient and family comfort. 

Objectives: To characterize the strength and nature 

of the relationship between comfort of palliative 

patients and their carers. 

Materials and methods: In this correlational study 

we applied the Comfort Holistic Questionnaire (HCQ 

- PT) and the Questionnaire of Holistic Comfort - 

Family (FHCQ - PT) to the dyad of patients in 

palliative care / family carers, (49 items, from 1-6). 

Lower scores = less comfort. 

The sample consisted of 27 patients /27 carers. 

Patients were mostly men (66.7%), mean age = 71.3 

years (SD=9.3), 55.6% with cancer. 8 were inpatient 

and 19 were at home. 

Results: The comfort of carers is correlated with 

patients comfort in 32 of the 49 scale items. These 

correlations are positive and statistically significant 

(p< .05; p< .01), indicating that the greater the 

patients’ comfort, the higher the carer comfort 

(Spearman’s rho>.31< .77). When Patients experience 

relief, ease and transcendence simultaneously, carers 

felt more comfortable in Psychospiritual context 

feeling more self-confident, better self-esteem and less 

depressed. In sociocultural context they have better 

personal relations and less financial worries when 

patients are comfortable. Also in environmental 

carers refer more comfortable with temperature and 

furniture. 

Conclusion: Study highlights the relation between 

patient and family comfort. 



Perspectives of Family Members on Planning 

End-of-Life Care in the Older Palliative 

Patient 

van Eechoud I.J. 1 , Piers R. 1 , Van Camp S. 1 , Grypdonck M. 2 , 

Deveugele M. 3 , Verbeke N. 4 , Van Den Noortgate N. 1 

1 Ghent University Hospital, Department of Geriatrics, 

Ghent, Belgium, 2 Ghent University, Department of 

Social Health and Nursing Sciences, Ghent, Belgium, 

3 Ghent University, Department of General Practice 

and Primary Health Care, Ghent, Belgium, 4 Ghent 

University Hospital, Department of Medical 

Oncology, Ghent, Belgium 

Aims: Advance Care Planning (ACP) is the process by 

which patients together with their physician and 

loved ones establish preferences for future care. This 

study aimed to get insight into the views and attitudes 

of family members concerning ACP of older persons 

near the end of their lives. 

Methods: Semi-structured, in-depth interviews were 

conducted with 20 family members of elderly patients 

with a limited prognosis. Interviews were transcribed 

and submitted to thematic analysis. 

Results: Up until now the analysis shows that the 

family member’s position in the ACP process of their 

loved one is a continuation of their role in the existing 

relation. For instance family members who are used to 

give the patient the freedom to make his/her own 

choices will do so in end-of-life issues too. Other 

factors influencing the position of a family member 

are: their own opinion about the benefit of ACP, trust 

in healthcare providers, acceptance of the nearing 

death of the patient and the burden of initiating 

conversations about death and dying (both for 

themselves as for the patient). 

The role a family member prefers to have in the 



process of ACP doesn’t always correspond to the way 

the patient involves the family member. In case of 

tensions there appears to be an important role to play 

for the physician. 

Conclusions: The position of family members 

regarding ACP of the patient appears to be strongly 

embedded in their relationship patterns. Their vision 

on ACP, trust in healthcare providers, acceptance of 

the nearing death of the patient and burden of 

initiating ACP are other factors of influence. 

Healthcare providers should carefully explore these 

factors and respect the long-lasting family dynamics 

in order to assure the quality of ACP. 

This study was funded by a grant from the Belgian Federal 

Public Service of Health (NKP_24). 



How Do the Patient and his/her Family Face 

Anorexia as a Terminal Disease? 

Corrales Villar S. 1 , Rodriguez Pascual N. 2 

1 Serviço Nacional de Saúde, Centro de Saúde de Borba 

ARS do Alentejo, Borba, Portugal, 2 Servicio Madrileño 

de Salud, Area 11, Centro de Salud El Reston, 

Valdemoro, Spain 

Aim: To assess the impact of the suffering caused by 

anorexia in patients with terminal disease and their 

families. 

Methodology: Reviewing the literature 2001-2010 

using MEDLINE, PubMed, Ovid Medline, EMBASE, 

Cochrane Library Elservier internet portals: SECPAL, 

UNIVADIS, FISTERRA, American Society of Cancer 

and SCWD (The Society on cachexia and Wasting 

Disorders). 

Results: 84 (eighty-four) articles were found; 55(fiftyfive) 

dealt with Pharmacotherapy; 5(five) global 

subjective evaluation; 7(seven) nutritional or psychosocial 

intervention; one about the family attitude 

towards anorexia and one another about 

communication and spiritual support. 

Most studies refer syndrome anorexia-caquexia with 

more or less depth. Cachexia often appears as a cause 

of morbidity and mortality so early therapeutic 

intervention of anorexia is required, in order to 

prolong survival and positively influence in the 

patient life quality. Therapy joint to pharmacological 

and multifactorial intervention is more effective than 

the individual one, but we still can´t find an outline 

of effective treatment. It has not been shown that 

drugs used in anorexia improve the patient life 

quality. 

Conclusion: Despite that suffering caused by 

anorexia on patients and their family is important 

and frequent; there are few studies that broach it. 

There should be more research to find out how family 

and patients face this problem. Is it different 

depending on the values of society, the cultural level 

and the place where you live? Has there been any 

change in recent years? And what can be their 

solutions? 

Keywords: Anorexia, cachexia, cancer, family. 



Social-economics Profile of the Patients with 

Advanced Cancer of the Cancer Hospital 

Chaves A.R.D.M. 1 , de Souza A.N.L. 1 , Verissimo S.M.L. 1 



Objective: Describe the social-economics profile of 

the patients that were hospitalized in the unity of 

palliative cares of the cancer hospital, Brazil, in the 

year of 2010. 

Method: The methodology applied was to 

retrospective to gather of the social data kept in the 

genogram of social profile of the hospitalized patients, 

analysis of data the software SPSS version 15.0 and 

institutional documents. We evaluated the gender, 

age, clinic of origin, civil state, degree of struction, 

previdencial/assistencial situation, local residence and 

type of assistant received to build a social-economic 

profile. 

Results: The inclusion of socials data in the data 

system of hospital allowed a sight of social reality of 

the patients registered, expressing a small part of the 

social reality that institution of health in question is 

inserted. We verify a short degree of education the 

patients that reflects the kind of profession or even 

absence of the formal works and the exclusion of the 

previdential system. 

Conclusion: The knowledge from the history of 

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palliative cares in Rio de Janeiro and from the socialeconomics 

profile of the patients allows an 

improvement in the attendance served to this user`s 

population. Reaffirm the necessity of the realization 

of continuous research, with study of population and 

publish of the results because the institution`s role as 

a formulator social policy and opinion in Brazil. 



Nursing Interventions that Promote Hope in 

Caregivers of People with Chronic and 

Advanced Illness: A Systematic Review of the 

Literature 

Marques R.M.D. 1 , Dixe M.D.A. 1 , Querido A. 1 

1CHLN; Universidade Católica Portuguesa, Lisboa, 

Portugal 

Introduction: In chronic or advanced illness, hope 

is essential, in order to deal positively with the disease 

and prepare for the death (Miller, 2007). Because of 

the proximity to patients / families, nurses are in 

strategic position to intervene in this situation (Ersek, 

2006).Caregivers have identified hope as a strategy 

that allows them to continue to go on every day, as 

well as the inner strength to achieve a better future 

and continue to take care of the patient (Duggleby & 

Williams, 2010). 

Objectives: To describe and analyze empirical 

studies that focus on nursing interventions 

systematically organized to encourage hope in 

caregivers of people with chronic and advanced 

disease. 

Methodology: This review, following the 

methodology of Cochrane Centre, was guided by the 

question: Is it possible that a systematic nursing 

intervention is capable to promote hope in caregivers 

of people with chronic and advanced diseases? We 

searched in electronic databases and libraries using 

keywords: Hope; caregiver; end-of-life; chonically ill, 

nursing strategies/ interventions. 

Results: Of the 148 identified articles, only five 

fulfilled all the criteria for inclusion / exclusion: 

“Hope in the family caregiver of terminally ill people” 

(1993), “Living with Hope Program” (2007, 2010), 

“Health-promoting conversations about hope and 

suffering” (2008), “Breaking the fourth wall: 

activating hope through participatory theatre” 

(2009). As strategies they viewed a video, 

brainstormed, had hope promoters dialogues, 

reflective diary, Handbook of hope, shared memories 

of the past and significant objects. 

Conclusion: Hope is one of the central aspects in 

nursing care; is a component of dynamic concepts 

such as: quality of life, comfort and decision making 

becoming essential to define systematic nursing 

interventions that promote hope. 

Keywords: Hope, caregivers, intervention, strategies, 

chronic disease. 



Advanced Dementia and Palliative Care: 

Distress and Burden Characteristics of 

Caregivers 

Costa-Requena G. 1 , Espinosa Val C. 1 , Cristófol R. 1 , Cañete 

J. 2 

1 Antic Hospital St Jaume and Sta Magdalena, Mataró, 

Spain, 2 Hospital of Mataró, Mataró, Spain 

Aims: The need to incorporate the palliative care 

treatment to advanced dementia patients, is 

nowadays well Known. The aim of this study is to 

assess the caregiver’s burden and distress of patient 

with advanced dementia, who need to carry out 

palliative treatment when they were admitted at the 

psychogeriatric unit. 

Design and methods: The data were collected from 

demographic and medical information about the 

patients with advanced dementia and theirs 

caregivers. The patients had diagnosed of advanced 

dementia according to Hospice enrollment criteria for 

end-stage dementia patients. The questionnaires Zarit 

Burden Interview, and the General Health Questionnaire 

(GHQ-28) were utilized to assess the caregivers. 

Results: This sample consists of the responses of 31 

primary caregivers caring for dementia patients who 

need to carry out palliative care. The type of dementia 

more prevalent was Alzheimer (51,6%). Considering 

the functional status of the patients, a great number of 

them were unable to sit indepently (51,6%), others 

were not able to walk (35,5%) whole others had loss of 

all intelligible vocabulary (22,6%). The comorbility 

associated to advanced dementia were: eating 

problems (80,6%), ulcers (32,3%), pyelonephritis 

(32,3%), febril episodes (22,6%), pneumonia (16,1%), 

septicaemia (12,9%) and albumin less than 2,5 gr/dl 

(9,7%). Caregivers were women (77.4%), the more 

frequent kinship ties between patient and caregiver 

were son/daughter (74,2%). The mean score in 

caregiver’s distress was clinically significant (GHQ-28: 

8,2; Sd:6,1), and had higher scores on caregiver’s 

burden (ZR: 47,72; Sd:13,69). 

Conclusions: Considering the higher burden related 

symptoms and psychological distress among 

caregivers. The identification and inclusion of 

patients with advanced dementia into the palliative 

care program, could improve the emotional support 

to the family into health care assistance. 



Technology Used by Children with Complex 

Needs at Home in Ireland 

Doyle C. 1 , Nicholl H. 1 , Leckey Y. 2 

1 Trinity College Dublin, School of Nursing and 

Midwifery, Dublin, Ireland, 2 Trinity College Dublin, 


Background: The number of children with complex 

needs who require care at home is increasing 

nationally and internationally (DoH&C, 2009). The 

consequence of using technology to support these 

children at home, and the implications of its 

complexity and competent use by parents, is not 

recognised. 

Aim: The aim of this baseline study was to identify 

the type of technology used by children with complex 

needs who are being cared for at home and the issues 

this raises for their carers. 

Study design and methods: A quantitative 

research design was adopted. Ethical approval was 

obtained from a University ethics committee. Data 

was gathered from a focus group with expert nurses 

providing care services through a voluntary 

organisation in Phase 1. In Phase 2 data was collected 

from families (n=178) regarding the technology used 

in care provision for children aged 4 and under 

(n=66%) and children aged five and over (n=34%). 

Data was analysed using SPSS V17. 

Results: The findings indicate that a significant 

range of equipment was used to assist the child with 

activities of living; 34% of the children used assistive 

communication; 54% had shower or bath 

adaptations; 39% of families used feeding pumps and 

36% used postural supporting equipment. Oxygen 

therapy was used by 21% of families and 26% used 

suction equipment within the home. Parents raised 

concerns about sourcing, managing and storing the 

equipment used at home. 

Conclusions and recommendations: The nature 

of the equipment used at home when caring for 

children with complex needs requires close attention 

and the challenges it raises for parents needs to be 

fully explored. These include issues related to cost, 

safe use and delays in ordering which need to be 

addressed by health professionals involved in 

supporting families providing care at home. 



Benefit beyond Medication: A Qualitative 

Study Exploring Advanced Cancer Patients’ 

Experiences of Symptom Control Clinical 

Trials 

Middlemiss T.P. 1,2 , Laird B.J. 1,3 , Fallon M.T. 1 

1 University of Edinburgh, Department of Palliative 

Medicine, Edinburgh, United Kingdom, 2 St Andrew’s 

Hospice, Airdrie, United Kingdom, 3 Norwegian 

University of Science and Technology, European 

Palliative Care Research Centre, Trondheim, Norway 

Introduction: The lack of a strong evidence base in 

palliative care is in part due to the lack of clinical 

trials. It has been suggested that conducting clinical 

trials in palliative care is unethical and may be 

burdensome for patients. There is evidence that 

patients with advanced cancer want to participate in 

clinical trials but this is based on hypothetical studies; 

no studies have been done which explore the 

experiences of patients who have actually participated 

in symptom control trials. This study examines the 

experiences of advanced cancer patients who have 

participated in symptom control trials. 

Methods: A qualitative study using a grounded 

theory approach. Patients were purposively selected 

from two double blind placebo controlled clinical 

trials of novel analgesic agents. Semi-structured 

interviews were conducted until data saturation was 

reached. The constant comparative methodology of 

grounded theory was used for data collection and 

analysis. 

Results: Key motivating factors for trial participation 

were altruism and a desire to improve symptoms. 

Central themes from data analysis highlight the 

positive impact being in a clinical trial can have for a 

patient. Patients highly regard the relationship with 

research staff, particularly the nurses. The positive 

impact of participating in a trial was the same, 

irrespective of the change in the symptom being 

studied. The risk of side effects of trial medication and 

the possibility of receiving a placebo was not a strong 

concern for patients. 

Conclusions: This is the first study that explores the 

experiences of advanced cancer patients in symptom 

control trials. Their experiences are largely positive 

with no patients expressing the view that their 

population is a vulnerable one which merits special 

consideration. 

Funding: Jointly funded by a university grant and an 

award from a specialist palliative care unit. 


Withdrawn 



Experiences with and Attitudes towards 

Advance Care Planning in the Dutch 

Population and its Determinants 

Raijmakers N.J. 1,2 , Rietjens J.A. 1 , Kouwenhoven P.S. 3 , 

Vezzoni C. 4,5 , van Thiel G.J. 3 , van Delden J.J. 3 , van der 

Heide A. 1 

1 Erasmus MC, University Medical Center, 

Department of Public Health, Rotterdam, 


Center, Department of Medical Oncology, Utrecht, 

Netherlands, 3 University Medical Center Utrecht, 

Julius Center, Utrecht, Netherlands, 4 University of 

Trento, Department of Sociology and Social Research, 

Trento, Italy, 5 University Medical Center Groningen, 

Department of Health Sciences, Metamedica, 

Groningen, Netherlands 

Introduction: Advance Care Planning (ACP) is a 

process enabling people to express wishes about their 

future health care in consultation with their 

physicians and relatives. We studied the 

characteristics of people being involved in some form 

of ACP. 

Methods: We conducted a cross-sectional survey 

among a representative panel of the Dutch 

population, age 18-95 (n=1960, response rate 78%). 

We assessed whether people had ever thought about 

end-of-life decision-making, whether they had 

discussed their preferences with relatives or 

physicians, and whether they had a written advance 

directive. Through multivariate logistic regression 

analyses, we calculated associations between ACP and 

people’s experiences, attitudes, knowledge and 

personal characteristics. 

Results: Of the respondents, 70% had ever thought 

about decision-making at the end of their lives, 41% 

had ever discussed it with their relatives and 4% with 

their physician, and 7% had documented their wishes 

in an advance directive. Factors associated with these 

aspects of advance planning were: being older than 55 

yrs of age, being female, having a fair health status, 

having a relative who had requested euthanasia, 

acceptance of euthanasia, having little trust in 

physicians following patients’ wishes at the end of 

life, having a preference for making their own health 

decisions rather than physicians doing this, being 

familiar with the term palliative care and having some 

knowledge about the Euthanasia Act. 

Conclusion: The majority of the Dutch public 

reflects about their ideas of end-of-life decisionmaking, 

but only a minority actively discusses these 

ideas with relatives; discussions with physicians and 

recording advance directives are rare. People differ in 

the extent to which they are involved in different 

forms of ACP, by their characteristics, attitudes, 

experiences and knowledge. Hence, ACP seems not 

suit everyone and should be approached broader than 

only through advance directives. 




A Study to Explore the Views and Perceptions 

of Haematologists towards Palliative Care, 

Based on their Own Clinical Experience 

Wright B. 1 , Forbes K. 1 

1 University of Bristol, Department of Palliative 

Medicine, Bristol, United Kingdom 

Background: Patients with haematological 

malignancies are referred to specialist palliative care 

(SPC) services less frequently than patients with other 

types of cancer, despite evidence demonstrating that 

their symptoms are equally distressing. As a result, the 

National Institute for Clinical Excellence has 

recommended greater integration between haematooncology 

and SPC services. To date, little is known 

about the attitudes of haematologists towards more 

collaborative care. 

Aim: This study explores the views and perceptions 

of haematologists towards palliative care, based on 

their own clinical experience, focusing on those 

factors that help or hinder referral to SPC services. 

Methods: We performed in-depth face-to-face 

interviews with a purposive sample of eight Trainee 

and Consultant Haematologists working in tertiary 

referral centres in the West Midlands, UK. All 

interviews were recorded, transcribed and 

subsequently analysed using the principles of the 

grounded theory approach. 

Results: Preliminary data analysis has revealed six 

emergent themes: continuity of relationships; 

defining limitations of treatment; overlapping roles; 

unpredictable transition; inadequate training and 

consistency in service provision. Positive attitudes 

towards specialist palliative care involvement were 

expressed by most participants. The role of SPC 

services was sometimes difficult to define, with timing 

of referral often determined by the participant’s level 

of confidence in end of life care. Almost all 

highlighted a lack of inpatient palliative care unit 

provision, resulting in negativism towards referral. 

Conclusion: While positive attitudes have been 

expressed, identified barriers to collaboration need 

further attention. Suggestions for improvement are 

focused around: improved training; mutual respect 

and understanding; clearer definition of the role of 

SPC services; consistency and flexibility in service 

provision. 



The Existential Needs of Muslim and Christian 

Cancer Patients During Palliative Care 

Boelsbjerg H.B. 1 

1 Institute of Public Health, University of Southern 

Denmark, Research Unit Health, Man and Society, 

Odense C, Denmark 

Background: Research shows that being religious 

can act as a resource in times of crisis. Cancer patients 

receiving palliative care are confronted with their own 

death, which often provokes a crisis. This condition 

might be easier to address when the cancer patient has 

a religious faith that offers explanations on suffering 

and death. Religion and religiosity can comfort the 

dying person and help the family to act supportive. 

Objectives: The ongoing PhD project focuses on the 

existential needs of Muslim and Christian cancer 

patients in palliative care. The purpose is to 

investigate which role religion and religiosity plays 

when patients are terminally ill. As part of the 

research the project aims to describe the ways these 

needs are being met. 

Method: Methodically the research starts from a 

multi perspective approach, which has shown its value 

in previous studies in the palliative area. The 

approach consists of qualitative interviews with 

patients, relatives and professionals. The interviews 

are combined with field observations in the hospitals 

and in religious settings. 

Design: Informants are found among cancer patients 

who receive palliative care. The patients have to 

define themselves as Christians or Muslims. 10-15 

patients participate in the project. The patients will be 

asked to point out a both a relative and a professional 

who support them. The interviews are supplied by 

observations, which will provide insight into the 

silent and embodied practice the patients use as 

strategies to cope with their condition. 

Perspective: The objective is to describe different 

ways to cope with existential needs through a 

religious scope and to shed light on how these needs 

are being met. Hereby the PhD project aims to 

contribute to the progress of cancer treatments and to 

support that palliative care meet the existential and 

spiritual needs of the patients. 

Funding: The Danish Cancer Foundation and 

Southern Danish University have funded the project. 



Happiness and Maslow’s Hierarchy of Need: 

Relevant to the Assessment of Patients with 

Advanced Cancer from Different Ethnic 

Groups? 

Koffman J. 1 , Morgan M. 2 , Edmonds P. 3 , Speck P. 3 , 


1 King’s College London, Palliative Care, Policy and 


College London, Department of Primary Care and 

Public Health Sciences, London, United Kingdom, 


Care, Policy and Rehabilitation, London, United 


Background: Maslow’s hierarchy of need provides a 

theoretical and practical framework to comprehend 

how human potential is achieved. This construct has 

been interpreted to include manifestations of 

happiness. To date, however, Maslow’s hierarchy has 

not been examined to understand meanings of 

happiness among palliative care patients, or whether 

this is socially patterned. 

Aims: To explore the presence and meanings of needrelated 

happiness among Black Caribbean (BC) and 

White British (WB) patients living and dying from 

advanced cancer in London. 

Methods: 26 BC and 19 WB patients with advanced 

cancer were recruited from in-patient and 

community-based palliative care teams and outpatient 

oncology and lung clinics. Semi-structured 

interviews were conducted and analysed using 

framework analysis which included strategies to 

maximize rigor. 

Results: 22 BC and 16 WB participants volunteered 

views on the meanings and associations of happiness 

in relation to their advanced cancer. The fulfilment of 

‘physiological’ needs, and particularly being free of 

distressing symptoms, was a more common theme 

among BC participants. The most common theme 

shared by both ethnic groups was associated with 

‘belonging and acceptance’, typically being 

surrounded by family and friends. More BC than WB 

participants referred to importance of ‘self 

actualisation’ needs that were associated with a deep 

connection with God, prayer and the sacred world. 

Conclusions: The findings from this study identify 

that living with advanced cancer comprises a number 

of intersecting levels of need that may contribute to 

happiness. Whilst the most basic needs warrant 

urgent attention, higher level needs also deserve 

timely consideration and action; some of which may 

incorporate a cultural element. We recommend that 

when health and social care professionals assess 

patients from different cultural backgrounds, 

opportunities be made for them to express 

information about happiness and how it can be 

realised. 



Palliative Sedation: It Is Suffering that Counts 

Weyers H. 1,2 , Van Tol D.G. 2 , Van der Vegt B. 2 , Raijmakers 

N. 3,4 , Vezzoni C. 2,5 

1 University of Groningen, Department of Legal 

Theory, Groningen, Netherlands, 2 University Medical 

Center Groningen, Department of Health Sciences, 

Metamedica / Expertise Center Ethics of Care, 

Groningen, Netherlands, 3 Erasmus MC Rotterdam, 

Department of Medical Oncology, Rotterdam, 

Netherlands, 4 Erasmus MC Rotterdam, Department of 

Public Health, Rotterdam, Netherlands, 5 University of 

Trento, Department of Sociology and Social Research, 

Trento, Italy 

Aim: How patients understand the concept palliative 

sedation and the due care criteria this treatment is 

subjected to, is hardly known. Neither is known how 

patients evaluate these requirements. In this study we 

interviewed citizens to fill this gap. 

Methods: We did an interview study among 16 

Dutch citizens. Respondents were selected from 

participants in a quantitative survey (n= 1960). For 

the interviews we selected citizens with varying 

experience and attitude in respect to end of life 

treatments. The - semi structured - interviews were 



analysed with Atlas-ti. Interviewees were asked for 

their first associations with ‘palliative sedation’, their 

experiences and their responses to a vignette. 

Results: Since in 10% of all deaths palliative sedation 

is practiced in the Netherlands, we expected citizens 

to know the concept. During the interviews it became 

clear this is often not the case. When asked to respond 

to the concept, the interviewees mentioned a 

combination of abstention and sedation, but also 

starvation, pain relief without further specification or 

nothing at all. 

Later on in the interview we presented a vignette of 

palliative sedation. The interviewees were able to 

recognize the case as palliative sedation, however it is 

not clear whether this is an interview effect. 

In relation to this case we also looked whether the 

interviewees knew that, according to the Dutch 

guideline, palliative sedation is only allowed when life 

expectancy is less than two weeks. They did not. 

Furthermore they did not think of such a limitation of 

time as important. To them it is the suffering that 

counts, not life expectancy. 

Conclusion: Palliative sedation and its requirements 

are not commonly known. Furthermore, interviewees 

do not realize that if carried out in a case of a longer 

life expectancy palliative sedation is a treatment that 

shortens live. And if they do, they seem to be 

indifferent about this effect. 



Do Croatian People Have Problem with 

Accepting Difficult and Bad News? 

Rimac M. 1 , Majurec M. 2 

1 Croatian Association for Hospice/Palliative Care, 

Zagreb, Croatia, 2 Oncology Centre for Women, 

Zagreb, Croatia 

Aims: 

1. How are people informed about palliative care and 

euthanasia? 

2.How are they prepared to accept bad news? 

3.What are their preferences about place of death? 

4. Do they ever think about their death and dying? 

Methods: The questionnaire was made according to 

the random sample of 100 people. The other group of 

100 were the doctors from Emergency center and the 

third group were 100 oncologysts from two clinics. 

We wanted to check if people´s atttitudes towards 

death are connected with their setting. 

Results: First group aged 20-75: 70% of them knew 

about palliative care and euthanasia. 30% knew about 

euthanasia, but not for palliative care.98%of them 

want to know truth about diagnosis, 2% not sure.90% 

of them think that thay will tell the truth to loving 

person, 5% are not sure, 5% think that they should 

not say the truth.Their preferences about place for 

death: 60% hospital, 30% own home, 10%other 

place. 40% sometimes think about death, 15% never, 

15% do not like to speak at all. 30% rare. The second 

group from Emergency center and group three 

oncologysts: 100% informed about palliative care and 

euthanasia.90%of them prepare to accept bad news, 

and want to know the truth. 8% not sure that thay 

want to know their bad diagnosis, 2% do not want to 

know. 90% will tell a family member about bad news, 

10% not sure.Preferences about place of 

death:physicians from Emergency center, 90% own 

home, 8%hospital ,1% hospice, 1% euthanasia. 

Oncologyst: 60% hospital, 30% home, 10% other 

place. 

Conclusion: The randomly selected poeple who 

answered to this questionaire were very interested in 

this topic. They participated gladly. Physicians from 

group 2 who visit the patients daily (but for short 

time) are very close to this topic and knew very well 

what they wanted. Oncologyst have shown resistance 

and poor will to this questionnaire and topic in 

general. They all agreed that this theme and questions 

are very hard to deal with due to their everyday 

connection with these kind of patients. 



Cultural Differences in End-of-Life Decisions 

in Countries where Euthanasia Is Legally 

Possible: What Do We (Not) Know about it? 

Deschepper R. 1 , Rietjens J. 2 , Chambaere K. 2 , Buiting H. 3 , 

Deliens L. 2,3 , End-of-Life Care Research Group Ghent 

University & Vrije Universiteit Brussel 

1 Vrije Universiteit Brussel, Medical Sociology, 

Brussels, Belgium, 2 Vrije Universiteit Brussel, Brussels, 

Belgium, 3 EMGO Institute for Health and Care 

123 


(Thursday)


(Thursday) 


Research VU University Medical Center, Amsterdam, 

Netherlands 

Introduction: Dying is a human event that 

eventually all people will experience. However, 

substantial cross-cultural differences have been 

observed in preferences on how to die. Due to the 

medico-technological evolution, patients in their last 

phase of life are often confronted with complex endof-life 

decisions (ELDs). In 3 countries (Belgium, the 

Netherlands and Luxemburg) also euthanasia is now 

one of the legally possible options. 

Aim: To explore cultural differences in end-of-life 

decisions in countries where euthanasia is legally 

possible. 

Method: Analysis of the available - published and 

unpublished - quantitative data of physicians 

reporting on representative samples of death 

certificates in Belgium and the Netherlands. 

Results: Data on Belgian deaths indicated that 

euthanasia, life-ending without request and 

continuous deep sedation are more prevalent among 

native Belgians than Belgian migrants. A comparison 

of deaths in the Brussels-Capital region revealed that 

continuous deep sedation is performed more often by 

the French-speaking physicians. Among non-Western 

migrants, intensive symptom alleviation was used less 

frequently but euthanasia was not less common. The 

practice of life-ending without request occurred much 

more among Belgian natives than among Dutch 

natives. 

Conclusion: The available data revealed both 

similarities and significant differences related to 

cultural aspects such as language and ethnicity. 

However, rather than a simple bifurcation between 

natives and foreigners, we found a much more 

complex pattern revealing also unexpected 

differences within Belgium and between Belgium and 

the Netherlands. The number of migrants in the 

available data was low and our findings elicit many 

unanswered questions. Therefore, future data 

collections should also include migrants and pay 

more attention to the complex factor of culture. 

Role of funding: This study was funded by the 

Belgian Science Policy (Project TA/00/034). 



Patients´ Needs and Expectations and the 

Cancer Coping Strategies 

Czerwik-Kulpa M. 1,2 , Jarosz J. 2 , Markowska-Gasiorowska 

A. 2 , Pozarowska E. 2 , Gorska H. 2 

1 Medical University of Warsaw, Institute of Medical 

Psychology, Warszawa, Poland, 2 Oncology Centre in 

Warsaw, Institute of Paliative Care, Warszawa, Poland 

Aim: The main goal was to identify the dependencies 

between the cancer coping strategies and patients’ 

needs and the level of their fulfillment. The research 

was meant to help the Hospital Support Team (HST) to 

provide patients with more aimed help to address the 

issues lowering their QoL. Secodary goal was to test 

Patients Expectation and Satisfaction Questionaire 

(PESQ) as a standard evaluation tool for HST. 

Methods: Anonymous research was conducted using 

the 3 parts questionnaire: Mini-MAC measuring 

coping strategies, VAS measuring actual, average and 

maximum pain last week and PESQ measuring 

patients needs, their satisfaction and the need for 

improvement. The research was performed on 

oncology ward patients that have been taken in HST’s 

care. The results were statistically examined. 

Results: The average actual pain score was 3.4, 

average maximum 7.9 and average average 5.1. 

Correlation analysis has shown the following: 

Destructive coping strategies correlated negatively 

with the need for information and deciding about self 

and positively with time spent watching TV, 

importance of receiving care and the need to be with 

relatives. Constructive coping strategies correlated 

negatively with loneliness and maximum pain. 

Conclusion: Frequent watching TV is linked to 

negative strategies. It is possible that TV substitutes 

real people what suggests loneliness as the root cause 

of negative strategies. Two most important factors 

influencing patients mental adjustment are control of 

the physical symptoms and solitude. The patients 

that feels left alone is likely to develop negative 

strategies even if the symptoms are controlled. At the 

same time uncontrolled pain greatly lessens the 

chance for positive adjustment even if the patient has 

good support. The work of HST coping both with 

symptoms and psychological issues can greatly 

improve patients quality of life. The research has 

shown that PESQ is a powerful tool to assess patients 

needs and improve their quality of life. 



A Qualitative Interview Study of Treatment 

Withdrawal in Intensive Care: Implications 

for Quality End of Life Care 

Coombs M. 1,2 , Long-Sutehall T. 1 , Addington Hall J. 1 


Sciences, Southampton, United Kingdom, 

2 Southampton University Hospital Trust, Cardiac 

Intensive Care Unit, Southampton, United Kingdom 

Research aims: To investigate end of life care decision 

making and treatment withdrawal in UK intensive 

care from the perspective of participating doctors 

and nurses, and to consider the implications for the 

provision of end of life care in this setting. 

Design: Qualitative study using semi-structured 

interviews with 13 medical staff and 13 nurses directly 

involved in the care of 17 patients who underwent 

treatment withdrawal in two intensive care units in a 

large university-affiliated English hospital. Cases were 

selected via retrospective case note review. Analysis 

applied constant comparison technique to generate 

key themes from participants’ accounts. 

Results: Patients who died in Intensive Care 

appeared to follow a three-stage end of life trajectory: 

admission with hope of recovery; transition from 

intervention to end of life care; a controlled death. 

Respondents reported clear decision making processes 

in both the first and last stages, with clear end of 

life care goals once treatment was withdrawn. The 

transition from intervention to end of life care was 

much more problematic, with the potential for conflict 

between medical teams, as well as between doctors 

and nurses. 

Conclusions: The End of Life care strategy in 

England emphasises the importance of end of life care 

for all patients regardless of setting. These findings 

demonstrate the need to focus on the transition from 

intervention to end of life care, rather than end of life 

care itself, to improve the lives of the one in five 

intensive care patients who die in this setting each 

year. 

Study funded by a National Institute for Health 

Research - Research for Patient Benefit Grant. 



The Added Value of Palliative Care in the ART 

Era 

Powell R.A. 1 , Namisango E. 1 , Kiragga A. 2 , Mpanga 

Sebuyira L. 2 , Kikule E. 3 , Downing J. 4 , Mwangi-Powell 

F.N. 1 , Simms V. 5 , Harding R. 5 

1 African Palliative Care Association (APCA), Kampala, 

Uganda, 2 Infectious Diseases Institute, Kampala, 

Uganda, 3 Mildmay International, Kampala, Uganda, 

4 Formerly of APCA, Kampala, Uganda, 5 Cicely 

Saunders Institute, King’s College, Lodon, United 


Background and aims: The advent of 

antiretroviral therapy has ostensibly diminished the 

role of palliative care (PC). This study aimed to 

determine the added value of PC in sub-Saharan 

Africa. 

Study design and methods: A prospective 

longitudinal study was conducted at two clinical sites 

in Uganda to test the null hypothesis that there would 

be no difference in care outcomes. Data were collected 

on consecutively recruited patients over 6 months 

using the MOS-HIV and the APCA African POS. 

Changes in mental and physical health over time 

were assessed using multilevel modelling. Wilcoxon 

rank sum test evaluated the association between PC 

and the APCA POS items at study completion. 

Results: 123 patients were recruited in the PC arm; 

117 in the control arm. PC was associated with a 1.1 

increase in physical health (P=0.048); and a 1.2 

increase in mental health (P=0.029) after controlling 

for baseline values. However, changes did not achieve 

clinical significance. 

On the POS, at study completion PC was associated 

with less pain (Z=2.44, P=0.01), less symptom distress 

(Z=2.30, P=0.02), better shared feelings (Z= -2.5, 

P=0.01) and feeling at peace (Z= -3.572, P< 0.001), and 

with more help and advice (Z= -3.99, P< 0.001). 

Patients at the control site were more likely to find life 

worthwhile (Z=4.38, P< 0.001). 

Conclusion: Findings detected comparative change 

in a limited number of PC areas, possibly attributable 

to the atypical, resource-abundant HIV provider in 

the control arm. The study suggests that PC could add 

further value in typical Ugandan health providers. 

This study was funded by the Diana, Princess of Wales 

Memorial Fund. 



Opening Conversations: Talking about Death 

and Dying with People with Dementia and 

their Carers 

MacConville U.M. 1 , Dillon A. 2 , Doran A. 2 , Keogh C. 3 , 

McGettrick G. 2 , O’Donnell M. 2 , White S. 2 

1 University of Bath, Centre for Death and Society, 

Bath, United Kingdom, 2 Alzheimer Society of Ireland, 

Dublin, Ireland, 3 Bloomfield Care Home, Dublin, 

Ireland 

Background: ‘Opening Conversations’ is an 

Alzheimer Society of Ireland (ASI) (parted funded by 

the Irish Hospice Foundation) initiative to develop a 

model of palliative care interventions within, and 

beyond, ASI services. 

Objectives: Clarifying appropriate palliative care 

interventions within dementia care contexts. 

Establishing, with service users and providers, the 

extent of palliative care needs in order to develop a 

model for best practice. 

Identifying awareness of illness progression and 

preparation for end-of-life care amongst people with 

dementia and their carers. 

Methodology: ASI service providers conducted 

individual interviews with people with dementia and 

their carers. Process consent protocols were developed 

and adopted for this research. 

Results: For person with dementia—uncertainty 

about diagnosis; limited awareness of change and 

illness progression and little or no legal and financial 

preparation. 

For carers—limited understanding of illness 

progression and required planning; difficult to discuss 

the illness with person with dementia; caring for a 

person with dementia can put relationships with 

spouses/children under considerable strain; uncertain 

of role in long term care settings and no preparation 

for post caring role 

For both— the timing of information was a key issue 

as was the high degree of social isolation. 

Conclusion: It is difficult to have a conversation 

about end-of-life care needs when it is already difficult 

to talk about having dementia. The stigma attached to 

dementia can lead to difficulties in discussing the 

illness and delays in ascertaining an accurate 

diagnosis—increasing social isolation. The illness 

characteristics, in particular cognitive impairment, 

gives a greater imperative to talk about illness 

progression and end of life care at an early stage in the 

illness. 



Assessing the Impact of Case Management in 

Geriatric Patients with Heart Failure at the 

End-of-Life 

Collell N. 1 , Poyato E. 2 , Lopez M. 2 , Martinez A. 3 , Doz A. 2 , 

Aroca J. 2 , Sales P. 4 

1 Health Corporation Parc Tauli, Integral Assessment 

Team Ambulatory, Sabadell, Spain, 2 Health 

Corporation Parc Tauli, Home Palliative Care, 

Sabadell, Spain, 3 Health Corporation Parc Tauli, 

Sabadell, Spain, 4 Parc Tauli Hospital, Sabadell, Spain 

Introduction: The health care management 

provides quality care in geriatric patients with heart 

failure at the end-of-his life. Nursing leadership to 

manage the process successfully, monitoring and coordination 

of patient care, with special emphasis in 

health education, and individualized self-care. 

Objective: Assess the impact of the nurse’s 

intervention and monitoring at the end of life of 

geriatric patients with advanced heart failure, 

attended by a EAIA (integral Assessment Team 

ambulatory patients with heart failure), in 2009. 

Methods: Descriptive and retrospective study of all 

patients included in the program EAIA in 2009. Those 

patients were selected by diagnosis of heart failure. All 

health stories were checked and collected a total of 

453 patients. Variables included: demographic, health 

scales, associated diseases, care, nursing activity, 

number and duration hospital admissions. 

Results: It has been collected a total of 453 patients. 

The monitoring was done by interviewing in 13 

families, 820 phone calls and 35 emails. In 32% of 

cases, there vas a bereavement follow-up. The sample 

had 58% women, over 85 years with a Barthel Index 

of 75% and Pfeiffer and 80% higher functions 

preserved. Patients followed by the team presented a 

28% decrease in admissions in the emergency 

department, 46% decrease in hospital admissions and 


60% reduction in days of stay. 

Conclusion: The impact of case management in 

elderly patients with heart failure is manifest in 

admissions in hospital, allowing the patient to spend 

the final stage of life in their environment, while 

ensuring a good quality of life. 



From Framework to Clinical Practice: The 

Evolution of the First Conservative Kidney 

Management Service for Patients with Endstage 

Renal Failure in Northern Ireland 

McAuley J. 1 , Sloan L. 2 

1 Northern Health and Social Care Trust, Hospital 

Specialist Palliative Care Team, Antrim, United 

Kingdom, 2 Northern Health and Social Care Trust, 

Renal Team, Antrim, United Kingdom 

Introduction: The prevalence of advanced kidney 

disease has steadily increased in the UK over the last 

decade. Renal replacement therapy (RRT) can 

improve survival and quality of life (QOL) for most 

patients but a significant number of frail elderly 

patients with multiple co-morbidities do not show a 

significant benefit. The annual mortality rate and 

symptom burden for these patients are very similar to 

that of patients with advanced cancer. The challenge 

is therefore to provide a high quality, effective and 

equitable service for this vulnerable patient group. 

Goal: To develop and pilot a new conservative 

management option for patients with end-stage renal 

failure living in the NHSCT. 

Method: A baseline review of case notes of 10 

patients attending the NHSCT low clearance clinic to 

identify service gaps and guide the evolution of a new 

conservative management clinic. 

Baseline results: Symptoms caused by uraemia, 

anaemia and fluid imbalance were monitored and 

managed in 100% of patients but no evidence of 

holistic assessment. There was no multi-professional 

review of patient care, 50% of patients discussed their 

goals of care with a specialist physician but prognostic 

information and advance care planning (ACP) was 

rarely documented (20%). No-one was referred to 

Community Palliative Care (CPC) but 40% were 

referred to the district nurse. 

Conclusion: A new monthly conservative kidney 

management clinic has been developed to meet the 

palliative care needs of this patient group. It allows 

multiprofessional holistic review aiming to improve 

QOL with excellent symptom control, appropriate 

end of life care and high quality information and 

support for patients and families. Quality outcomes 

will be monitored (symptom control, timely referral 

to CPC and primary care team; ACP information; 

prognostic indicators (surprise question, Patient 

Outcome Scale (renal version) and Palliative 

Performance Scale); use of ICP of dying phase (renal 

version)) and a pilot audit ongoing. 



Symptom Burden, Psychological and Spiritual 

Concerns of Patients with Progressive 

Idiopathic Fibrotic Interstitial Lung Disease 

Bajwah S. 1,2 , Higginson I.J. 2 , Ross J.R. 1,3 , Wells A.U. 3,4 , 

Birring S.S. 5 , Riley J. 1,3 


Foundation Trusts, Department of Palliative Care, 

London, United Kingdom, 2 King’s College London, 

Cicely Saunders Institute, Palliative Care and Policy, 

London, United Kingdom, 3 National Heart and Lung 

Institute, Imperial College, London, United Kingdom, 

4 Royal Brompton Hospital, Department of Respiratory 

Medicine, London, United Kingdom, 5 King’s College 

Hospital, Department of Respiratory Medicine, 


Background: Little is known about the palliative 

care needs of patients with Progressive Idiopathic 

Fibrotic Interstitial Lung Disease (PIF-ILD). As part of a 

study to develop a complex palliative intervention at 

the end of life, we retrospectively studied patients 

dying in 2 London Hospitals. 

Aims: To describe the palliative care needs and end of 

life preferences of patients with PIF-ILD. 

Methods: Two hospitals within London were 

approached to participate in the study- a world class 

referral centre with patients across London and the 

surrounding counties and a tertiary hospital which 

serves a geographical area characterised by material 

and social deprivation. Retrospective assessment of 

case notes of PIF-ILD patients who died January 2009- 

May 2010 were carried out. Demographics, palliative 

care needs, treatments and end of life preferences 

were compared. The General Practitioner was 

contacted for clarification of demographic 

information where necessary. 

Results: 45 PIF-ILD patients were identified. 12 

symptoms were documented with a mean of 3 and 

median of 3 per patient. The most common 

symptoms in the last year of life were breathlessness 

(42 (93%)), cough (27 (60%)), fatigue (13 (29%)) and 

chest pain (13 (29%)). Very few patients had 

documented depression/anxiety (10 (22%)) and none 

had documented spiritual distress. 25 patients had comorbidities 

including COPD, Heart Failure, Gastro- 

Oesophageal Reflux Disease and pulmonary 

embolism. Few patients had preferred place of care (8 

(17%)) or preferred place of death (6 (12%)) 

documented. 

Conclusion: These patients had a wide range of 

palliative care needs and a number of co-morbidities. 

There was little documentation of psychological and 

spiritual needs or end of life preferences. It is likely 

that the palliative care needs of these patients are 

greater than reported; improved assessment, 

documentation and treatment with appropriate 

access to specialist palliative care services are a 

priority. 



Symptom Burden in Non-malignant Palliative 

Medicine Patients at the End-of-Life 

Wallace E.M. 1 , Tiernan E. 1 

1 St. Vincent’s University Hospital, Palliative Medicine, 


Introduction: It is widely acknowledged that 

palliative care is appropriate for patients with nonmalignant 

conditions; however there is strong 

evidence of unmet needs, including symptom 

control, among this population. There is evidence 

that at least 20% of patients with end-stage, nonmalignant 

disease have comparable levels of 

symptom severity to cancer patients. We aimed to 

assess the symptom burden and care needs in nonmalignant 

patients referred for end-of-life care to our 

service. 

Method: We retrospectively reviewed the medical 

records of all non-malignant referrals to the specialist 

palliative medicine service (SPMS) in an acute tertiary 

referral centre from January-December 2009.Those 

discharged from hospital and those with a concurrent 

diagnosis of malignancy were excluded. Data were 

analysed using Excel. 

Results: Seventy-two patients referred to the SPMS 

with non-malignant disease died in our institution 

during the study period: 25 male (35%), 47 (65%) 

female. Mean age 77.4 years (range 21-91). Mean time 

from referral to death was 3.5 days (< 1-21). Principal 

symptom issues (n=109) prompting referral included: 

secretions/dyspnoea (n=40, 37%), pain (n=30, 

27.5%), agitation/confusion (n=24, 22%), 

nausea/vomiting (n=4, 3.5%), seizures (n=4, 3.5%) 

and low mood (n=2, 2%). Five (4.5%) patients had no 

symptoms. Fifty-five patients (76.4%) were 

subsequently commenced on a continuous 

subcutaneous syringe driver (CSCI) for symptom 

control with 12 different medications used, resulting 

in 25 different medication combinations. The average 

length of time spent on a CSCI pre death was 3.5 days 

(range < 1-17). 

Conclusion: Our results indicate that non-cancer 

patients do indeed have a large and complex 

symptom burden. This confirms that the needs of 

these patients at the end-of-life must be considered. 

Furthermore, recognition of the role of the SPMS in 

end-of-life care would allow the treatment of complex 

symptom issues in a more timely fashion. 



The Development of Guidelines for Providing 

Palliative Care to Patients with Tuberculosis 

Gwyther L. 1 , Cameron S.P. 2 

1 Hospice Palliative Care Association, Cape Town, 

South Africa, 2 Hospice Palliative Care Association, 

Patient Care, Cape Town, South Africa 

Although tuberculosis (TB) is curable, according to the 

World Health Organization it is the major cause of 

death in people infected with HIV, many of whom live 

in the developing world and are poor and 



malnourished. South Africa has the second highest 

incidence of TB worldwide, (948/100 000) and the 

problem is being exacerbated by an increasing burden 

of drug resistant TB.The Hospice Palliative Care 

Association of South Africa (HPCA) established a TB 

task team to develop Guidelines for Providing Palliative 

Care to Patients with Tuberculosis as it felt that all its 

member organizations needed to have relevant and 

accurate information to promote the provision of 

effective care and to ensure the safety of health care 

workers who are at increased risk of contracting TB 

disease,In terms of its definition, the goal of palliative 

care is to improve the quality of life for people with a 

life-threatening illness and their family members. HIV 

infected people with TB, particularly drug resistant TB, 

clearly fall into this category. Palliative care services 

play a major role in improving the quality of life of 

people with TB infection and the guidelines outline a 

framework for treating and managing TB patients with 

palliative care needs. It focuses on the four key 

elements of the national Department of Health’s TB 

policy - intensified case finding, infection control, INH 

preventive therapy (IPT), the Integration of HIV and 

TB, as well as the provision of holistic care, including 

pain and symptom control, particularly for patients 

with drug resistant TB and on facilitating coping with 

loss and grief and bereavement follow upThis 

presentation will focus on the development of the 

guidelines, which are a first in the field of palliative 

care, and their application within the context of the 

provision of palliative care to TB patients, including 

those with drug-resistant TB. 



Referral Patterns of Non-malignant Patients 

to a Specialist Palliative Medicine Service - A 

Retrospective Review 

Wallace E.M. 1 , Tiernan E. 1 

1 St. Vincent’s University Hospital, Palliative Medicine, 


Background: Specialist palliative care should be 

initiated early in the disease trajectory of patients with 

non-malignant conditions. Our perception is that 

these patients are referred late. The aim of this 

retrospective review was to examine non-malignant 

referral patterns to the specialist palliative medicine 

service (SPMS) in our institution. 

Methods: All non-malignant referrals to the SPMS in 

an acute tertiary referral centre from January- 

December 2009 were included. Data were collected 

from medical records and analysed using Excel. 

Results: Ninety-two non-cancer referrals were 

identified: 60 (65%) female, 32 (35%) male. Mean age 

76.5 years (21-92). Primary reasons for referral 

included: terminal care (n=55, 60%), symptom 

control (n=23, 25%), home care support (n=13, 14%) 

and psychological support (n=1, 1%). Mean time from 

admission to referral to the SPMS was 24.9 days (< 1- 

165). Referring teams included: respiratory (n=18, 

20%), medicine for the elderly (n=16,17.5%), surgical 

(n=15, 16.5%), gastroenterology (n=14, 15%), renal 

(n=10, 11%), cardiology (n=7, 7.5%), general internal 

medicine (n=4, 4.5%), hepatology (n=3, 3%), 

endocrinology (n=3, 3%) and rheumatology (n=2, 

2%). The Liverpool Care Pathway (LCP) was 

commenced in 39 (42%) patients. Mean time spent 

on the LCP was 2 days (< 1-8). A continuous 

subcutaneous syringe driver (CSCI) was used on 56 

patients (61%). Mean time spent on a CSCI was 2.8 

days (< 1-17). Primary outcomes included: death 

(n=72, 78%), home discharge (n=9, 10%), discharge to 

another care institution (n=6, 6.5%), discharge from 

service (n=3, 3.5%) and hospice transfer (n=2, 2%). 

Mean time from referral to the SPMS to outcome was 

4.6 days (< 1-35). 

Conclusion: The proportion of non-cancer patients 

referred to the SPMS is our institution is high. It would 

appear that these referrals are sent when patients are 

imminently dying. Further education of colleagues is 

warranted in the role of the SPMS, particularly with 

regard to early referral. 



Grief Reactions in Dementia Carers: A 

Systematic Review of the Literature 

Chan D. 1 , Livingston G. 1 , Jones L. 1 , Sampson E. 1 

1 UCL, Mental Health Sciences, London, United 


Aims & objectives: Little is known about the grief 

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process in carers of people dying with dementia. We 

conducted a systematic review of grief reactions with 

the aim of researching this subject further. We 

identified characteristics, prevalence rate, predictors 

and associations of grief reactions in dementia carers. 

Method: Electronic databases Medline, Embase and 

Cinahl+ were searched using text words and MeSH 

terms “grief”, “bereavement” AND “dementia.” 218 

abstracts were screened. We excluded all reviews, 

opinion articles, non-grief or dementia carer specific 

trials, articles validating grief rating scale, young onset 

and AIDs related dementia trials. Included were all 

primary studies in community settings including 

interventional trials. We found 31 final papers. These 

were scored independently using modified standard 

tools. 

Results: There were 17 quantitative, 11 qualitative 

and 3 mixed methods studies. 20 looked at grief 

reactions that occurred before death of the person 

with dementia; 11 studies looked at after death grief. 

Pre-death grief was characterised by carer sadness, 

anger and denial with losses for both carer and care 

recipient. There were differences in quality and type 

of emotions experienced by adult children and spouse 

carers. Placing a person with dementia into a care 

home precipitated further grief. Post death grief was 

characterised by relief after death, losses of pre-death 

grief and post death reflections. The prevalence of predeath 

grief reactions was 47-71%. Depression and 

carer burden correlated positively with pre-death 

grief. Pre and post death depression and positive 

aspects of caregiving predicted post death grief. 

Conclusion: Grief reactions in dementia carers are 

common and appear to have similar but distinct 

characteristics before and after death. Depression is 

associated with pre death grief and predicts post death 

grief. Positive aspects of caregiving also predicts post 

death grief. 



Differences between Guidelines and Actual 

Opioid and Midazolam Prescribing in 

Amyotrophic Lateral Sclerosis (ALS) - A 

Descriptive Observational Retrospective 

Study 

Núñez Olarte J.M. 1 , Conti Jiménez M. 1 , Pérez Aznar C. 1 , 

Sánchez Isac M. 1 , Cantero Sánchez N. 1 , Solano Garzón M. 1 



Our 20 year old Palliative Care Unit (PCU) has been 

involved for the last three years in the management of 

terminal Amyotrophic Lateral Sclerosis (ALS) patients. 

Research aim: To explore the validity of current 

proposed national guidelines in the management of 

terminal ALS. 

Study design and methods: All ALS patients 

attended by our PCU within March 2008 (1 st patient 

ever attended) and July 2010 (last patient attended) 

have been included, and reviewed retrospectively. 

After a specific literature search, 51 variables for the 

review were selected, and grouped in 8 categories 

(demographics 2, nature of illness 8, end of life 9, 

symptoms 11, psychological 2, ethics 10, drug 

therapy 6, team 3). No statistics have been used due to 

the expected small size of the sample. 

Results: 14 patients have been attended during the 

study period with a life span from consultation 

ranging from 1 day to 73 days. 5 patients had been on 

non-invasive mechanical ventilation (3 discontinued 

at the PCU), and 1 patient on invasive mechanical 

ventilation (discontinued at the PCU). The immediate 

cause of death was pneumonia in 7 cases, and 

respiratory failure alone in another 3 cases. Median 

equivalent daily dose of oral morphine ranged from 0 

to 90 mg/day on admission to PCU, and 0 to 

2700mg/day on day of death. Midazolam parenteral 

doses ranged from 0 to 45mg/day on admission to 

PCU, and 0 to 415mg/day on day of death. High doses 

of morphine and midazolam for symptom control 

were associated in all cases with previous exposure to 

opioids and benzodiazepines (6 cases). Only 3 out of 

the 14 patients could have been managed adequately 

with a strict application of current national protocols, 

which do not allow for large doses of these drugs. 

Conclusion: Current national guidelines are not 

valid for the management of terminal ALS. A 

significant percentage of patients will need large doses 

of opioids and sedatives, and will likely be better 

attended within a palliative care program. 




How do Danish Nurses Describe their 

Perception and Experience with Palliative 

Care and Heart Failure Patients? 

Hasselkvist B. 1 , Dreyer P. 2 

1 Regionshospitalet Randers, Randers NØ, Denmark, 

2 Aarhus University Hospital, Aarhus, Denmark 

Background: In Denmark specialist palliative care is 

mainly reserved for cancer patients. The national 

guidelines for the treatment of heart failure, gives no 

advices for palliative care except optimal medical 

treatment. Little is known about if and how palliative 

care is practiced to patients with end stage heart 

failure. 

Aim: The aim of this study is to describe nurses’ 

perception and experience with palliative care and 

heart failure patients. 

Study design and methods: In 2010, one semistructured 

focus group interview was conducted with 

5 nurses working in a cardiac clinic in a hospital 

setting. The interview was recorded, transcribed 

verbatim and analysed according to a 

phenomenological-hermeneutic method. 

Findings: Nurses are not used to explicate subjects 

concerning palliative care and heart failure patients 

and they are not used to look upon heart failure 

patients as having a terminal disease. The nurses’ 

experiences are described in the following: 

Perception of palliative care “It means something 

different in my mouth than in yours” 

To know and follow the patient: “You know them - 

don’t you?” 

The unpredictable illness trajectory and 

communication “And then they are suddenly gone!” 

Lack of Interdiciplenary Corporation: “That’s the 

frustrating part” 

Visions for palliative care: “Yet, it’s perhaps not that 

simple for us” 

Conclusion: Nurses, in this study, are highly 

interested in achieving the knowledge and skills to 

improve palliative care themselves, rather than 

leaving the patient in care of palliative teams. The 

question is, whether this improvement can be lead by 

the cardiologist themselves? Anyway, there is a need 

for improvement in communication about death and 

dying because the nurses believes that heart specialist 

leaves the patients behind with a too optimistic 

opinion of there illness. The unpredictable illness 

trajectory makes it difficult to identify the right time 

to start palliative care. 



Palliative Care for Patients with Chronic 

Disorders of Consciousness 

Jox R.J. 1 , Kühlmeyer K. 1 , Borasio G.D. 2 


for Palliative Medicine, Munich, Germany, 



Aims: Chronic disorders of consciousness (CDC) - the 

persistent vegetative state (PVS) and the minimally 

conscious state (MCS) - are disorders with an 

increasing prevalence at the intersection of 

rehabilitative medicine and palliative care (PC). We 

aim to review studies on PC of CDC patients, and to 

provide a theoretical framework for PC treatment and 

research in this patient group. 

Methods: A literature search was performed using 

the PubMed and EMBASE databases, supplemented 

by screening cross-references. The theoretical analysis 

is based on the definition of PC by the World Health 

Organization. 

Results: Most studies deal with end-of-life decision 

making. Symptom management should include the 

treatment of neurological symptoms (spasticity, 

seizures, hiccup, autonomic hyperactivity), but also 

pain, incontinence and constipation. Existing data 

suggest that PVS patients do not perceive pain, while 

MCS patients do. Whether symptoms are consciously 

perceived, how treatment effects might be monitored 

and how the drug dosages may be found are still open 

questions. Addressing psychosocial and spiritual 

needs is vital for relatives. Treating patient and 

relatives as a unit of care is a particular challenge as 

their interests are often divergent. End-of-life decision 

making is complicated by a high rate of misdiagnosis, 

the vague prognosis and the protracted course of the 

condition. There are no data on the dying phase and 

the quality of death after withdrawing artificial 

nutrition and hydration. 

Conclusion: There are numerous PC issues in CDC 

patients, and the research agenda is vast. A PC 

approach to CDC patients is warranted as these are 

life-shortening diseases with a slowly progressive 

course and a high symptom burden. Palliative care 

should be involved from the diagnosis on, as this is 

the time when symptoms are pronounced and endof-life 

decision making is relevant. The other urgent 

need for PC is at the time of shifting the treatment 

goal and in the dying phase. 



A Specific Unit for Patients Suffering from 

Chronic Disorders of Consciousness (CDOC). 

Objectives and Psychological Interventions and 

Procedures within the Multidisciplinary Team 

Elvira de la Morena M.J. 1 , Alvarez R. 1 , Vidaurreta 

Bernardino R. 1 , Bermejo Mochales E. 1 , Delgado Z. 1 , Luna 

Garrido J. 1 , Blanco Pascual E. 1 , Vals y Vallespi J. 1 , 

Grantham S.J. 1 

1 Fundación Instituto San José, Unidad de Daño 

Cerebral, Madrid, Spain 

Patient profile within the unit: The majority of 

our patients diagnosed with CDOC, are mostly in a 

Permanent Vegetative State (PVS) with a palliative 

care program, 137 patients cared for from 1999 until 

26/10/2010. 

Interdisciplinary care: Physicians, psychologists, 

neurophysiology, nurses, auxiliary nurses, social 

workers and spiritual practitioners, music therapist. 

Regular interactive interdisciplinary meetings are held 

to establish a consensus regarding guidelines of future 

action, anticipated goals and interventions. Each 

team member shares the same common professional 

objective - To provide holistic care to both the patient 

and family. 

CDOC affects the each and every family initiating an 


intense emotional strain and thus causing a severe 

imbalance which will in turn remodel the whole 

family network. Treatment for emotional injury 

suffered by relatives is paramount and therefore 

always included within the complex and 

comprehensive holistic care plans. 

Psychological intervention is fundamental as a core 

concept for the interdisciplinary team, as well as the 

evident management of physical, psychological, social 

care and spiritual needs of patient and his/her family. 

Care pathway of psychological intervention: 

1) Preadmission family interview 

2) Psychological assessment of the family structure: 

3) Initial response and perception to the condition: 

-CDOC’s family awareness and comprehension. 

-CDOC fears, worries, thoughts, hopes and wishes. 

-Measurement of the emotional circumstances. 

Identifying indicators of adaptive changes, type of 

family confrontation, risk of family retraction. 

4) Diagnosis, treatment and coordination for follow up: 

Approach to psychological diagnosis, goals and initial 

specific therapeutic techniques selection, 

reevaluation of the team’s findings and proposed 

specific intervention guidelines, referral to other 

resources, coordinated program for follow up. 

5) Attention to the grieving process. 



Characterization of the Non Oncologic 

Palliative Care Population of a Palliative Care 

Unit 

Sousa Resende T. 1 , Moreira C. 1 , Rodrigues C. 1 , Rodrigues 

C. 1 , Marques L. 1 

1 Hospital da Luz, Lisboa, Portugal 

Objectives: To identify the percentage and 

characterize the non-oncologic palliative care 

population admitted in a specialist palliative care unit 

into a Lisbon’s private hospital, between 1 March 

2007 and 28 February 2010. 

Methodology: The quantitative descriptive 

exploratory study was chosen by the researchers. The 

data was systematically collected from the 

computerized patient’s file and categorized according 

to an Excel data base created by the researchers. That 

data was statistically analyzed to generate the 

achieved results. 

Literature review: Franks (2000) divides palliative 

care in three fundamental intervention areas: 

oncologic diseases, pediatric terminal diseases and 

nonmalignant progressive diseases, being the 

highlighted in the last ones pulmonary diseases, end 

stage renal failure, cardiac failure and stroke. The 

author also asserts that the symptom prevalence 

varies according to the admission diagnosis, however, 

some symptoms, like the increasing weakness in 

patients with motor neuron disease or confusion in 

patients with dementia are of high prevalence. 

Different studies (Connil et al, 1997; Hockley et al, 

1988) claim dissimilar results, showing diverse 

symptom prevalence in patients with similar profile. 

Concerning the percentage of non oncologic 

population admitted for palliative care most studies 

are comparable, Franks (2000) states that these 

patients are one fifth of all the patients referred to 

palliative care, and Coventry (2005) concludes that 

these, in the UK, are 5% of the palliative care patients. 

However, in a former study performed by Kellar et al 

(1996) the percentage of non oncologic patients in a 

palliative care unit in the US is 55%. 

Results: The data is still under analysis, therefore the 

definite results will be presented at the oral 




Living Well with Dementia - How to Attend 

Dementia People Needs? Case Study 

Alves S. 1 , Coelho P. 2 , Sousa D. 2 , Almeida A. 2 , Alves P. 2 

1 Chelmsford Nursing Home, Dementia Unit, 

Chemsford, Essex, United Kingdom, 2 Catholic 

University of Portugal, Health Sciences Institute, 

Porto, Portugal 

Dementia is defined as a syndrome of a global and 

progressive decline in multiple areas of function, 

including decline in memory, reasoning, orientation, 

understanding, communication skills and the ability 

to carry out daily activities. Behavioral and 

psychological symptoms such as depression, 

psychosis, aggression, resisting care, hitting and 

wandering, occur at any stage of the illness and they 

are a changeling for the careers given. Dementia is a 

growing health and social issue, all shares the same 

devastating impact on those affected and their family 

careers. Dementia is a terminal disorder and can have 

a significant impact on quality of life, but people may 

live for 7-12 years after diagnosis. 

Aims: The aim of this Case study is address the needs 

of people with dementia, living in Nursing Home, and 

attend the needs of Dementia with Palliative care 

approach. 

Methods: A lady of 82 years with Alzheimer´s disease 

five years ago is admitted for symptom control by 

abdominal pain associated with constipation. 

Manifest severe dementia with marked reduction of 

vocabulary, resisting care, agitation alternating with 

periods of lethargy, insomnia, anorexia with marked 

food refusal, immobile with pressure zones at the 

sacrococcygeal level III. 

Results: Care held in the active promotion of 

comfort and dignity through interventions that 

respected the individuality of the patient, using a 

balanced management of treatment. 

Conclusion: Palliative care is the active care of 

people whose condition is not responsive to curative 

treatment. A palliative approach affirms life and 

promotes a positive attitude towards death and dying 

as a normal process. There is a very great deal that can 

be done to help people with dementia. Care that 

enhances the quality and life and dignity of the 

person with dementia is central to a palliative 

approach. 



Lower Extremity Amputation in Dementia 

Patients 

López-Muñoz M. 1 , García-García J.A. 2 , Santos-Morano J. 2 , 

Bayoll-Serradilla E. 2 , Vergara-López S. 3 , López-Alonso R. 2 

1 Valme University Hospital, Family Doctor, Seville, 

Spain, 2 Valme University Hospital, Department of 

Internal Medicine, Seville, Spain, 3 Osuna Hospital, 

Department of Internal Medicine, Seville, Spain 

Background: Amputation may be a solution in 

severe peripheral arterial disease (PAD). Lower 

extremity amputation (LEA) in advanced dementia 

patients is also a practice to improve the palliative care 

among these subjects. However, there is no 

information about patients with dementia susceptible 

to LEA. 

Objectives: The aims of this study were to describe 

LEA among patients in a palliative care unit, the 

occurrence of re-amputation and the survival of 

amputees. 

Methods: A retrospective study was conducted in a 

palliative care unit in southern Spain. All patients 

who were undergone to a LEA from September 2003 

to June 2008 were included. Patients were categorized 

according if they were diagnosed of advanced 

dementia. The survival time from the amputation was 

calculated. 

Results: One hundred and thirty-five subjects were 

amputated. Eighty-five (57%) were female and the 

median (Q1-Q3) age was 81 (74-86) years. A new 

amputation was undergone in 23 (17%) patients 

during the follow-up. Advanced dementia was 

reported in 33 (24%) of the subjects. Twenty-two 

(15%) patients underwent a metatarsal or toe 

amputation. Thirty-three (94%) and 85 (83%) subjects 

with and without dementia underwent a primary 

above-knee amputation (p=0.14). Diabetes was 

reported in 98 (66%) patients. During the study 

period, 113 (84%) individuals died. One-month, sixmonths 

and 1-year mortality was 85%, 62% and 37% 

among dementia patients and 73%, 43% and 25% in 

non-dementia group, respectively (p=0.21). Median 

(Q1-Q3) survival time were 8.8 (1.4-22.5) vs. 2.7 (0.85- 

11.7) in each group. 

Conclusions: There is a high mortality in patients 

underwent a LEA. Survival is remarkably shortened 

among non-dementia patients in the firsts months 

after a LEA. These results must be taken into account 

to improve the quality of life of advanced dementia 

subjects with symptomatic ulcer in lower extremity. 

Comparative studies between classical cures and 

amputation in non-reversal lower extremity ulcer 

should be done. 





Exploring the Transition from Curative Care 

to Palliative Care: A Systematic Review of the 

Literature 

Gardiner C. 1 , Gott M. 2 , Ingleton C. 1 , Ryan T. 1 

1 The University of Sheffield, School of Nursing and 

Midwifery, Sheffield, United Kingdom, 2 The 

University of Auckland, School of Nursing, Auckland, 

New Zealand 

Background: The UK End of Life Care Strategy 

identifies a need to better recognise patients who are 

likely to be in the final 12 months of life, and 

identifies one of the key roles of health and social care 

professionals as helping patients to come to terms 

with the transition from ‘curative care’ (with a focus 

on cure or chronic disease management), to end of life 

or palliative care. However, the transition to palliative 

care remains ill defined and under- researched. This 

paper aims to explore evidence relating to transitions 

to palliative care within a UK context. 

Methods: A systematic review of studies relating to 

the transition from curative care to palliative care was 

undertaken. Four electronic databases were searched 

for papers published between 1975 and March 2010. 

Inclusion criteria were all UK studies relating to the 

transition from curative care to palliative care in 

adults over the age of 18. 

Results: Of the 1464 articles initially identified, 12 

papers met the criteria for inclusion in the review. The 

evidence was grouped into four main themes 

(i) patient and carer experiences of transitions, 

(ii) recognition and identification of the transition 

phase, 

(iii) optimising and improving the experience of 

transitions, 

(iv) defining and conceptualising transitions. 

Conclusion: Making the transition from curative to 

palliative care can be a confusing and uncertain time 

for patients. The transition remains ill-defined and 

significant challenges exist with identifying when a 

palliative care approach is appropriate, particularly for 

patients with non-cancer diagnoses. 

Recommendations for optimising transitions include 

better recognition of the curative/palliative shift; 

comprehensive collaboration and a multidisciplinary 

approach; development of referral criteria; and 

improvements to continuity of care. Further 

refinements to the conceptual definition of 

transitions in palliative care may also be required in 

order to enhance understanding. 



Factors Influencing Access to Cancer and 

Palliative Care Services by People from 

Cultural Minority Groups: A Health 

Professional and Cultural Group Perspective 

O’Connor M. 1 , Peters L. 1 , Lee S. 1 

1 Monash University, Palliative Care Research Team, 

Frankston, Australia 

Aim: Very few Australian studies examine 

comparative usage of cancer and palliative care 

services and even less address those used by people of 

culturally and linguistically diverse (CALD) 

backgrounds. While there are policies and structures 

which address multicultural issues in the delivery of 

services, we know little about the cultural groups who 

utilise them. The aim of this study was to examine 

access to cancer and palliative care services by people 

from CALD backgrounds within an area of 

Melbourne, Australia. 

Design & methods: A mixed method was used to 

explore issues about access and use of services. The 

availability of a linked palliative care database 

provided an opportunity to compare data with the 

cancer registry to establish similarities and differences 

between the cultural groups. Individual interviews 

(n=11) with key service personnel and representatives 

of selected cultural groups provided information 

about services utilisation by these groups. Interview 

data were transcribed, examined and themes 

developed. 

Results: Findings showed that while the uptake of 

cancer services for people of CALD backgrounds is 

high, there are barriers that inhibit referral of these 

people to palliative care services when required. A 

number of issues like language and cultural practices, 

complex psycho-social problems, lack of awareness of 

palliative care and services offered were raised by all 

participants. However it remains difficult to 

accurately ascertain access levels for people from 

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CALD backgrounds and to compare whether the 

numbers referred to palliative care from cancer 

services are consistent with other population groups. 

Conclusion: This paper describes the common 

access issues that the study revealed, underscored by 

the need to recognise the individual differences of 

each person. These factors require consideration, so 

that utilisation of palliative care is “planned” with 

good outcomes, rather than a “random” occurrence 

which can result in a poor outcome. 



The Role of Prognostication in Prioritising 

Hospice Admissions 

Gough S. 1 , Khan S.A. 1 

1 Trinity Hospice, London, United Kingdom 

Background: Estimates of prognosis on hospice 

referral forms are widely used to prioritise admissions. 

However, previous research has highlighted the 

difficulty faced by clinicians attempting to 

prognosticate accurately. 

Aim: To assess accuracy of estimates of prognosis on 

referral forms to an in-patient hospice in London, UK. 

Method: A retrospective case note review of 54 

consecutive hospice admissions. 

Results: 12 case notes were excluded due to 

incomplete documentation of required information. 

Of the 42 patients included, estimated prognosis was 

documented in only 20 (48%) of referral forms despite 

the presence of a prompt. Of these, estimated 

prognosis was in the correct category of “days”, 

“weeks” or “months” in 12 cases. Therefore of the 42 

patients included in the study, only 29% had an 

accurate estimate of prognosis documented by the 

referrer. In one case, a patient with an estimated 

prognosis of “days” survived for several months, and 

another patient referred with a prognosis of “months” 

died within days of admission. The profession of the 

referrer was not associated with the accuracy of 

estimated prognosis. A greater proportion of patients 

died during their admission than expected by 

referrers. Although only 13 of the 42 admitted 

patients in the study were referred for “terminal care”, 

27 patients died during their admission. 

Conclusions: This study demonstrates the 

challenges involved in using estimated prognosis to 

prioritise hospice admissions. Since a significant 

proportion of patients admitted to hospices die 

during their admission, the ability to prognosticate 

accurately would be helpful in planning services and 

assessing need. Absence of prognostic estimates on 

referral forms may reflect reluctance amongst referrers 

to prognosticate due to the difficulty in making 

accurate estimates. When prioritising hospice 

admissions, prognostic estimates should be used in 

conjunction with assessment of clinical, psychosocial 

and spiritual needs. 



‘Allaying Fears ‘ Developing a Hospice at 

Home Service: Lessons to Share 

Baldry C.R. 1 , Jack B. 2 , Groves K.E. 3 , Birch H. 1 , Shard A. 1 

1 Queenscourt Hospice, Southport, United Kingdom, 





Southport, United Kingdom 

Background: The local hospice response to the End 

of Life Care Strategy was to develop individualised 

Hospice at Home services additional to existing 

community services. This service, comprising 3 

elements: accompanied transfer home; multi 

professional (including doctors) crisis intervention 

team and a flexible sitting service was established in 

the North West of England and piloted for 1 year. 

Pilot evaluation: The retrospective cohort study 

and stakeholder evaluation that was undertaken of 

the pilot phase, found that of the 201 patients who 

received the service 73% (132) died at home. 55 

Health Care Professionals(General Practitioners, 

District Nurses, Community Specialist Palliative Care 

Nurses and Hospital Discharge Coordinator) 

participated in semi-structured interview, focus 

groups and electronic open end questionnaires to 

identify their views on the service, its establishment 

and impact. In regard to the establishment of the 

service, the health care professionals reported that 

they had initially been fearful of the new service and 

how it could take over their role with terminally ill 

patients. However this fear was unfounded and they 

found the service to complement the care that they 

could provide. This poster describes the phases of 

planning and designing of the service, introduction 

and the pilot evaluation. Examples of good practice 

and lessons learnt will be presented 

Conclusions: This innovative model providing 

different elements of a Hospice at Home service, 

aimed to fill gaps in existing services, and provide a 

package to meet individual and local area needs. 

Initial fears and concerns of district nurses proved 

unfounded since providing the additional service did 

not supplant existing care. 



Patients Discharge to Intermediate-to-Long 

Stay Palliative Care Units Using the Palliative 

Performance Scale 

Sancho Zamora M.A. 1 , Plaza M.N. 2 , Zamora J. 2 , Cañada 

I. 1 , Díaz A. 1 , Gómez A. 1 , Rexach L. 1 

1 Hospital Universitario Ramón y Cajal, Equipo de 

Soporte de Cuidados Paliativos, Madrid, Spain, 

2 Unidad de Bioestadística Clínica. Hospital 

Universitario Ramón y Cajal, CIBER en Epidemiología 

y Salud Pública (CIBERESP), Instituto de Investigación 

Sanitaria (IRYCIS), Madrid, Spain 

Background: Recent studies have reaffirmed that 

Palliative Performance Scale (PPS) is a useful 

prognostic tool that can aid in estimating the survival 

of terminally ill palliative care patients at the time of 

initial assessment. This scale has also been used in care 

planning and resource management in palliative care. 

The aim of the present study was to estimate survival 

prediction based on the PPS at the time of discharge of 

patients who move to intermediate-to-long stay 

palliative care units from an acute care hospital and to 

evaluate the usefulness of this scale in discharge 


Study design and methods: Retrospective study of 

cancer patients assessed by a palliative care support 

team in an acute care hospital and discharged to the 

palliative care units from 01/07/08 to 31/12/09. 

Kaplan-Meier survival curves were estimated for the 

group of patients with PPS< 20% and >20% and 

compared with the log-rank test. A Cox model was 

adjusted to estimate survival probabilities at different 

times depending on the value of PPS at discharge. 

Results: 77 patients included, mean age 77 years (SD 

9.6); 42.9% female. Lung cancer was the most 

frequent (14.3%). At the time of discharge mean PPS 

was 40.9% (SD 12.6). Median survival was 4 days CI 

95% (0-9) in the PPS group ≤ 20% and 33 days CI 95% 

(19-47) in the PPS group >20% (p= 0.006). 

Conclusion: Survival of patients in the palliative care 

units was significantly different according to the PPS 

level. We elaborated a table of probabilities of death 

based on PPS at the time of discharge and the days 

after it that can be used for decision making. 



Electronic Palliative Care Summaries in 

Scottish Primary Care: Interviews with 

Patients, Carers and Health Professionals 

Campbell C. 1,2 , Hall S. 3 , Murchie P. 3,4 , Murray S.A. 1,5 

1 University of Edinburgh, Centre for Population 

Health Sciences, Edinburgh, United Kingdom, 

2 Scottish School of Primary Care Cancer Programme, 

Edinburgh, United Kingdom, 3 University of 

Aberdeen, Centre for Academic Primary Care, 

Aberdeen, United Kingdom, 4 Scottish School of 

Primary Care Cancer Programme, Aberdeen, United 

Kingdom, 5 Primary Palliative Care Research Group, 

Edinburgh, United Kingdom 

Aims: Electronic Palliative Care Summaries (ePCS) 

have been introduced in Scotland to provide out of 

hours (OOH) health professionals with information 

about medications, decisions regarding treatment, 

and other patient-specific content for patients with 

advanced illnesses in the community. The ePCS is 

sent automatically and daily from general practitioner 

(GP) records. We aimed to identify key issues around 

the introduction of this new technology and to 

identify facilitators and barriers to its use, and to 

explore patients and carer perceptions. 

Methods: Qualitative interviews (telephone or faceto-face) 

were carried out with GPs, practice and 

community nurses, and patients (and/or their carer) 

for whom an ePCS had been completed. Interviews 

were digitally recorded, transcribed and analysed 

thematically. 

Results: ePCS had growing usage amongst GPs across 

Scotland. Most GPs were using it only for cancer 

patients. All stakeholders viewed it positively. No 

interviewees had any concerns about loss of 

confidentiality. GPs believed that the experience of 

completing ePCS also had benefits for in-hours care 

such as advance care planning. OOH staff were 

generally supportive of electronic summaries as they 

felt more informed and confident when visiting 

patients in their own homes. Disadvantages raised 

include unfamiliarity with the process, limited time 

and computing skills, and reticence to engage with a 

new technology. The difficulty of GPs knowing when 

it was appropriate to broach and complete the ePCS 

was raised. 

Conclusions: Patients and professionals consider 

that ePCS has great potential. Recommendations for 

developing the effectiveness of this communication 

innovation include the completion of an ePCS for all 

patients with advanced progressive illnesses, and 

adequate training in ePCS completion and updating 

to be made available for all GPs and community 

nurses. 



National Indicator Sets for the Organisation 

of Palliative Care in the Netherlands and in 

Belgium: Differences and Similarities 

Woitha K. 1 , van Beek K. 2 , Engels Y. 1 , Vissers K. 1 


Department of Anaesthesiology, Pain and Palliative 

Medicine, Nijmegen, Netherlands, 2 University 

Hospital Leuven, Department of Radiotherapy- 

Oncology and Palliative Medicine, Leuven, Belgium 

Reseach aim: The importance of international 

comparisons of health care performance and quality 

of care is high because countries can learn from each 

other, patients and caregivers cross borders and want 

to receive high quality care. Quality indicators can be 

used to assess and compare health care. 

Although Belgium and the Netherlands share a lot of 

similarities like the same language, political system 

and geography, the organisation of health care and 

especially of palliative care is different. Both Belgium 

and the Netherlands took part in a European project 

with seven countries, in which indicators for the 

organisation of palliative care has been developed. 

Study design & methods: After an extensive 

literature search in spring 2009, a draft set of 

indicators was tested in a two-round modified Rand 

Delphi procedure in winter 2009-2010. In Belgium 

and the Netherlands three transmural, 

multiprofessional teams took part in a modified Rand 

Delphi procedure. 

Each team rated each indicator on two 9-point Likert 

scales, 1 being ‘not clear/useful at all,’ and 9 being 

‘very clear/useful.’ The analysis was done with the 

RAND/UCLA Appropriateness Method. Per country, 

the median ratings of the three teams for each 

indicator were calculated. An indicator was 

considered face-valid if the median rating was 

between 7 and 9. 

Results: In Belgium 87% of the indicators was rated 

face-valid, and in the Netherlands only 56%. There 

was an overlap of 53%. In contrast 9% of the proposed 

indicators were rated invalid in Belgium and the 

Netherlands. Differences existed in 29% of the 

indicators. Belgium and the Netherlands rated 12 

indicators valid which were not relevant for the 

international set. 

Conclusion: Although Belgium and the Netherlands 

seem to be so similar many inequalities concerning 

quality indicators in the organisation of palliative care 

exist. The advice might be not to adapt and 

internationl indicator set without having in mind the 

countrys’ own strucutres. 



Interpreting Rehabilitation in Palliative Care: 

Balancing Clinical Responsibility with 

Patient Choice 

Taylor J. 1 

1 St Christopher’s Hospice, Allied Health Professions, 


Aims: The therapy team aimed to deliver new 

strategies to promote independence and resilience for 

both in- and out-patient units to reflect the current 


new climate of survivorship. To equip the nurses at 

the bedside with rehabilitation skills to empower the 

patient would maximise mobility and function. For 

patients attending our new Anniversary Centre as day 

patients, focus would move away from solely one-toone 

sessions towards interactive group activity in a 

rehabilitation gym. 

Method: 

Inpatient service: A series of teaching sessions was 

delivered by our physiotherapists and occupational 

therapist to train nurses in basic rehabilitation skills. 

We embedded theoretical and practical educational 

components into the nurse competency framework 

by working closely with nurse managers. One 

attendance was required for a 3hr.session. 

Outpatient service: A modern concept rehabilitation 

gym was equipped to reflect contemporary fitness 

culture. A simple patient questionnaire sought views 

on session content, duration and frequency. 4 groups 

- Circuits, Pilates, Individual Goal, and Fatigue & 

Breathlessness- comprised 

achievable and realistic SMART goals, and addressed 

specific domains of rehabilitation including an 

educational element. 

Results: 

Inpatient service: Nurses maintain and maximise 

patient mobility and function, reducing their 

workload. The therapists now focus on more complex 

problems specific to their specialist skills and their role 

gains a higher profile within the M.P.team through 

better understanding. 

Outpatient service: Physiotherapy patient contacts 

increase by 9%, gym group attendances rise steadily to 

a maximum 63% increase over a 6 month period, 

with significant impact on patient resilience. 

Conclusion: All clinicians contribute to patient 

rehabilitation, and it starts at the bedside.Nurses 

support patient autonomy and seamless 

rehabilitation. Group activity raises patient morale, 

enjoyment and quality of life, while maximising 

staffing time and resources. 



Future of the Hospices in Postcomunist 

Transitional Country 

Veselska M. 1,2,3 , Dobríková P. 4,5,6 , Paceková M. 7,8 

1 DOM Bozieho Milosrdenstva, n.o., Board of 

Directors, Banska Bystrica, Slovakia, 2 Comenius 

University, Faculty of Roman Catholic Theology, 

Bratislava, Slovakia, 3 Comenius University, Faculty of 

Management, Bratislava, Slovakia, 4 Faculty of 

Healthcare and Social Work Trnava University, 

Palliative Care Unit, Trnava, Slovakia, 5 Association of 

Hospice and Palliative Care of Slovakia, Board of 

Directors, Palárikovo, Slovakia, 6 Refugium, n.o., 

Hospice, Trenńín, Slovakia, 7 DOM Bozieho 

Milosrdenstva, n.o., Hospice, Banska Bystrica, 

Slovakia, 8 Catholic University in Ruzomberok, 

Theological Faculty, Ruzomberok, Slovakia 

The presentation contains the analysis of the 

historical aspects and current situation in legislation 

and financing of existing hospices and palliative care 

units in Slovakia as the basis for finding possible 

future models of their functioning. 

Current situation in Slovakia (as it is in November 

2010) indicates that hospices are in terminal stadium 

of their existence. 

Presentation comprises financial analysis of the costs 

of hospice and palliative care services, financing 

possibilities within existing legislation and at the 

same time reaching the appropriate quality and 

standards. 

Slovakia is one of the post communist countries with 

transitional economy and health care system 

changing in the light of historical background, 

European legislation, changing domestic political 

scene and consequences of the global financial crisis. 

Still high spiritual values of old people are in contrast 

with post communist ideology with general valid 

opinion that state is financing everything. Sponsoring 

and voluntary systems are still functioning on very 

low level, especially in area of dying the elderly 

population. 

Government and state bodies as well as the public still 

do not understand importance and needs of the 

hospice and palliative care. 

The contribution is presenting pilot research study of 

the possible financing models for the hospice and 

palliative care from managerial (financial 

effectiveness and value for money), health (standards 

and quality) and psychological (ability and 

willingness to donate/pay for care) point of views. The 

authors have been working with the sample of 

stakeholders (patients, families, employees, donors, 

founders and volunteers) within various Slovak 

hospices and palliative care units to find out possible 

models of future existence of hospices in Slovakia, 

probably applicable to the other post communist 

countries. 



Is there Room for Palliative Care at an 

Intensive Care Unit (ICU)? 

Van den Eynden B. 1,2 , Vandewalle H. 1 

1 University of Antwerp, Antwerp, Belgium, 2 Centre 

for Palliative Care, GZA, Antwerp, Belgium 

Background: Despite of all efforts many critically ill 

patients admitted to and cared for at an Intensive 

Care Unit (ICU) will die in an environment that is 

designed and organised to save the life of such 

patients. 

Aim: This study researches the presence and quality 

of end-of-life care (EOLC) at an unit for Intensive 

Care. The focus was on the presence of EOLCprotocols, 

how decisions about end-of-life care are 

taken, how care around end-of-life is organised and 

what’s the nursing attitude concerning EOLC at an 

ICU. 

Methodology: It was a mixed, qualitative and 

quantitative, cross-sectional, multicentre and 

descriptive research project. Data were collected by 

means of semi-structured, in-depth interviews with 

doctors and head nurses and by means of 

questionnaires, filled in by nurses working at ICU’s. 

Results: No protocols for EOLC were present at 

ICU’s. Decisions most of the time were made by 

doctors using DNR-protocols, in which end-of-life 

care corresponded with the last two phases: the one of 

not extending therapy and the one of phasing out 

therapy. 

Other professional caregivers involved in EOLCdecisions 

were specialists and general practitioners. 

The involvement of nurses and of the family varied 

from one ICU to another, from no involvement at all 

to complete involvement. The support of the family 

was considered as an important part of EOLC and 

started most of the time before the EOLC-decision was 

taken. Nursing teams are open for the application of 

EOLC at an Intensive Care Unit but they also express 

their wish to be more involved in the process of 


Conclusion: End-of-Life Care is a very important 

topic at an intensive Care Unit. The actual 

organisation differs from one IUC to another. More 

attention is needed for the involvement of family 

members and nurses in the decision making 

concerning EOLC, and for a more appropriate 

communication between doctors and nurses. 



Retention and Destruction of Medical Records 

- A Hospice Approach 

Downs F.M. 1 , Mackay M. 1 , Ferguson L. 1 , Campbell M. 1 , 

Kelly J. 1 

1 Strathcarron Hospice, Denny, United Kingdom 

Aims: This initiative aims to comply with relevant 

legislation relating to appropriate retention and 

destruction of medical records, while recognising the 

increasing demands for retrieval and storage of 

medical records in a Hospice setting. 

Method: Current National guidance was distilled to a 

single page user-friendly checklist. In a retrospective 

pilot, templates were completed for 317 case records 

of all deaths from 1 st January until the end of May 

2010. A small clinical and administrative team was 

formed to consider refinement of the document and 

the process of implementation in routine clinical 

practice. Following an educational event to raise staff 

awareness, templates were completed for all recorded 

deaths (including community and Day Hospice 

patients) from June 2010 with review after 3 months. 

Results: Initial pilot results suggested that 12.9% of 

records required retention. The commonest reasons 

for retention were involvement in clinical trials or 

research and Procurator Fiscal referral. 

At the 3 month review, two questions were identified 

as causing dubiety and the checklist was modified 

further. 

Conclusion: Combining the skills of both 

administrative staff and clinicians has facilitated the 

implementation and refinement of the checklist 

process which has now become routine hospice 

practice. This has resulted in a more efficient system 



for retention, retrieval and destruction of medical 

records and will reduce present storage requirements 

for paper records. The principle will remain effective 

for electronic records. 



Palliative Care Networks in the Netherlands 

van Dijk M.J. 1 , Brummelhuis I. 2 , Tanghe S. 3 

1 Palliative Network DWO (on behalf of the National 

Workgroup Agora Networkcoordinators), RdGG, 

Delft, Netherlands, 2 Palliative Network Haaglanden, 

The Hague, Netherlands, 3 Palliative Network DWO 

Zeeuws Vlaanderen, Middelburg, Netherlands 

In the Netherlands, regional palliative care networks 

have been set up to improve palliative care. The 

governement finances these networks since 2003. 

There are 66 network regions in the Netherlands. 

A palliative care network is a consortium of healthcare 

providers in a given region. The aim of the networks is 

to support and coordinate that the best possible 

palliative care is provided to people at the final stage 

of their lives. Each network is supported by a network 

coordinator, who is responsible for developing the 

network and improve care support. 

A network is characterized by intensive cooperation 

and coordination of palliative care in a particular 

region by all providers. In this way the networks are 

complementary and will facilitate the transfer of 

patients from one place in accordance with their 

needs. 

In practice these networks ensure that: 

there is sufficient variety of good quality palliative 

care(so terminally ill patients have several choices) 

the care provided within the network is matched to 

the needs and difficulties of terminally ill patients and 

their families 

information about palliative care in the region is 

provided 

expertise, options for consultation and training in 

palliative care are on hand. 

In this presentation an overview will be given of the 

role of palliative care networks in the Netherlands. 



The Midas’ Touch Impact of Introduction of 

Gold Standards Framework into Acute 

Hospital Setting 

Groves K.E. 1 , Deeming E. 1 , Walker S. 2 


Services, Southport & Ormskirk NHS Trust, Southport, 



Background: The Gold Standards Framework (GSF) 

introduced to coordinate generalist palliative care in 

community. Adapted to assist care homes provide 

best possible end of life (EoL) care avoiding 

unnecessary hospital admission. Acute hospital is 

missing link in GSF. 

Aim: Part of wider programme to assess feasibility of 

introducing Acute Hospitals (GSFAH) Pilot into a 

whole hospital & assist in the development of the 

GSFAH adaptation. 

Method: Local acute trust joined first pilot GSFAH 

programme. Baseline audit, staff survey & review of 

death data was undertaken pre & post pilot. A huge 

publicity & educational programme rolled out across 

whole hospital & help of family doctors & district 

nurses in community, care home staff, & whole 

specialist palliative care services enlisted, in addition 

to support of hospital consultants, matrons & ward 

managers. 

Results: Use of Liverpool Care Pathway (LCP) 

increased by 30% during 7 month pilot compared to 

previous year. Over 150 patients identified at end of 

life & entered on GSF register which contained over 

800 patients by end of pilot. Every medical & surgical 

ward other than critical care & spinal injuries 

identified & registered GSF patients. The respiratory 

ward & lung cancer team registered vast majority, 

with stroke & gastroenterology wards coming close 

second. Gold cards were introduced for patients to 

alert health professionals to their needs. 

Conclusion: Introducing GSFAH to whole hospital 

at once was enormous undertaking. Clearly primary 

care, care homes & acute hospitals are very different & 

require different methods & materials. Positive 

benefits of scattering information & expectation 

widely were that the whole community (inside & 

outside hospital) became involved & resulted in 

129 


(Thursday)


(Thursday) 


creation of a whole area GSF (EoL) Register, 

stimulation of GSF in primary care especially where 

flagging, & recognition that, for an acute hospital, 

GSF is one of the roads on the Route to Success for End 

of Life care. 



Training GPs in Early Identification of and 

Proactive Care in Palliative Care Patients 

Thoonsen B. 1 , Engels Y. 1 , Groot M. 1 , van Weel C. 2 , Vissers 

K. 1 , van Rijswijk E. 3 

1 UMC St Radboud, Dept of Palliative Care, Nijmegen, 

Netherlands, 2 UMC St Radboud, Dept of Primary 

Care, Nijmegen, Netherlands, 3 UMC St Radboud, 

Dept of Primary Care and Dept of Palliative Care, 


Aim: General practitioners (GPs) were trained in how 

to identify palliative patients in an early phase of their 

disease trajectory and how to structure palliative care 

proactively, to improve different aspects of the quality 

of the remaining life of patients with severe chronic 

diseases such as COPD, CHF and cancer. Aim of this 

sub study is to evaluate how the GPs experienced this 

training and what they still use in clinical practice. 

Method: Sixty GPs were trained, during two training 

sessions of 2 hours each followed by two group 

coaching sessions. They were trained to use two tools. 

The first tool is a plasticized card (see figure 1) with 

indicators to identify and recognize patients with 

respectively cancer, COPD and CHF as being in a stage 

that palliative care should be considered, the so-called 

‘Radboud Indicators Palliative Care Needs’ (RADPAC). 

The second tool is on the back of the same plasticized 

card describing four different domains (1 st somatic, 2 nd 

care provision and activity of daily living, 3 td social 

context and financial domain and 4 th sense of 

meaning and psychological status) which served as a 

reminder for the structure of proactive planning 

(Proactive Palliative Care Planning Card, PPCPC). 

Experiences of the GPs are evaluated by use of semi 

structured telephone interviews and questionnaires. 

Results: Preliminary analysis revealed the GPs 

appreciated the training very much. They find it 

difficult to discuss the palliative care status with 

patients, especially in patients with COPD and CHF. 

The proactive care planning using the four domains 

worked out well for the GPs. The tool served as an 

good ágenda´ in providing and planning primary 




Who Cares? Organization of Palliative Care in 

Primary Health Care. A Qualitative Study 

Steenbakkers K. 1 , van Rijswijk E. 1 , Lucassen P. 1 , Galesloot 

C. 2 


Department of Primary and Community Care, 

Nijmegen, Netherlands, 2 Palliative Care Network 

Gelderland, Nijmegen, Netherlands 

Background: Palliative care for patients and their 

relatives is provided frequently in a primary health 

care setting. Often more than one discipline is 

involved in providing this care, for example general 

practitioners (GPs), district nurses, medical specialists 

and last but not least family carers. With multiple 

health care providers involved, cooperation and 

coordination of care are of high importance, 

especially in patients with a high level of complexity 

of necessary palliative care. 

Aim: To describe and analyze the (probable) 

problems with coordination of care from the 

perspective of patients, family carers and from the 

different health care professionals in primary care. 

Design: Qualitative study with semi structured 

interviews and focus group discussions. 

Methods: Individual semi-structured interviews with 

15 patients and their family carers receiving palliative 

care in a primary health care setting. And focus group 

discussions with GPs and district nurses of the 

involved patients. All material will be tape-recorded 

and transcribed into written text. Qualitative analysis 

by coding and categorizing text fragments will be 

done independently by two researchers using Atlas.ti. 

Results: Definitive results will be presented at the 

conference. We expect to discover themes, problems 

and possible solutions that are relevant for the 

organization of palliative care in primary health care. 

The expectation is that problems occur especially in 

the field of communication and information 

exchange, distribution of tasks and availability of 

professionals. We expect to identify several situations 

that cause problems in coordination, such as 

discharge from the hospital or change in needs for 

care. Also patient and context characteristics may play 

a part. 

Conclusion: With this study, we hope to identify 

issues within the organization of primary palliative 

care to develop further research. 

Main source of funding: Palliative Care Network 

Gelderland Zuid 



Palliative Care Services in Portugal: What Is 

our Coverage of Needs? 

Capelas M.L. 1 , Flores R. 1 , Roque E. 1 , Pingarilho M.J. 1 , 

Guedes A.F. 1 , Paiva C. 1 



Aim: To identify the degree of the coverage of needs 

of specialized palliative care services in Portugal. 

Methods: 

· We used the data by National Institute of Statistics 

and the estimates by the EAPC in your last White 

Paper; 

· We estimate the needs for 18 districts, Azores and 

Madeira. 

Results: 

· We have 5 Home Palliative Care Teams and only in 4 

districts (Faro, Lisbon, Porto, Setúbal); This represents 

a coverage of 4.7%; 

· We have 5 Hospital Palliative Care Support Teams 

and only in 4 districts (Lisbon, Portalegre, Porto, 

Setúbal); This represents a coverage of 8.2% 

· We have 241 specialized palliative care beds, but only 

185 in public institutions, and from the total only 159 

are in institutions recognized by the Portuguese 

Association for Palliative Care; This represents a 

coverage (mean) of 25.17%, of 19.32% and 16.61%, 

respectively; In 7 districts, Azores and Madeira, there 

aren’t no any specialized palliative care beds. 

Conclusions: 

· In Portugal we are too far from minimum 

requirements of a satisfactory coverage of the needs of 

palliative care services 

· Many people still lack access to palliative care service 

at the end-of-his-life 

We need a strategic plan urgently. 



‘Licence to Drive!’ Nursing Home Syringe 

Driver Loan Scheme 

Baldry C.R. 1 




Background: The UK End of Life Care Strategy (July 

2008) states that 16% of all deaths occur in care 

homes annually. Care homes consist of nursing 

homes (qualified nursing staff) and residential homes 

(unqualified staff). Locally 23% of all deaths occur in 

care homes, 36 of which are supported by education 

from a thriving palliative care LINK scheme. 

Some patients at end of life receive medication via 

continuous subcutaneous infusion (CSCI). Larger 

nursing homes often have their own syringe drivers 

but many, especially the smaller ones, do not. The 

cost of purchasing a syringe driver and providing 

annual calibration is not a priority for most homes 

especially if they are rarely used. 

District nursing teams provide input and support to 

end of life care patients in residential homes, 

including setting up and monitoring end of life drugs. 

Nursing homes employ their own qualified nursing 

staff, so do not require this input. 

Difficulties occur when nursing homes borrow a 

syringe driver from a district nursing team, depleting 

community stock and creating uncertainty in the 

confidence and competence of nursing home staff 

managing the equipment. 

Aim: Set up a nursing home syringe driver loan 

scheme, with nursing homes responsible for ensuring 

that their qualified nurses receive the relevant 

competency training before they are able to use it. 

Method: A syringe driver loan scheme, (equipment 

provided by a primary care trust and a local charity) 

Queenscourt Hospice ‘hosts’ the loan scheme, 

monitors the borrowing of equipment, and arranges 

the relevant competency training for qualified 

nursing home staff enrolled in the scheme. 

Results: During the first 12 months of the scheme, 

32 syringe drivers were borrowed by 18 nursing 

homes who had joined the scheme. Educational and 

practical issues raised, and the result of a survey 

exploring the benefits for both nursing home and 

district nursing staff are presented here. 



Extending Services and Enhancing Systems: 

Working Together to Manage Increased 

Numbers of Referrals and Better Prioritise 

According to Need 

Sutherland J. 1 , Midgley C. 1 



The national drive to improve access to palliative care 

and reach out to all patients with life limiting illness 

regardless of diagnosis has resulted in a significant 

increase in referrals to palliative care services. For 

service providers, expanding services to keep pace 

with increasing demand with limited financial 

resources is a challenge. Implementing end of life care 

strategy recommendations to ensure that access to 

specialist advice and clinical assessment is rapid and 

timely has served to intensify that challenge and 

encourage new thinking on service delivery. 

As the number of referrals to our service has grown it 

has been necessary to carry out a series of reviews of 

our referrals management, from acceptance of the 

referral through to the processing of them in each of 

the receiving departments. Our key aim has been to 

ensure that referrals are dealt with as quickly as 

possible and are prioritised appropriately according to 

need. 

Our reviews were conducted using a variety of 

methods including process mapping, audit and focus 

group work. Methods were chosen based on the size, 

needs and practice of each department. Securing 

practice changes to meet our aim has been well 

supported by the work we have progressed over the 

last six years to introduce a standardised holistic 

assessment across the organisation, in line with the 

recommendations of NICE (2004). We use an 

organisationally adapted version of the Support Team 

Assessment Schedule (STAS, 1989) as our common 

assessment tool. 

Our cancer network has yet to agree a network wide 

assessment tool, and therefore it has not been possible 

to utilise our adapted STAS tool to manage and 

prioritise initial referrals into our service. However, 

evaluation has shown that using STAS within clinical 

departments has enabled us to enhance our method 

of processing and prioritising referrals according to 

need and ensure that we are better placed to meet 

demand. 



The Provision of Culturally Competent 

Palliative Care in Glasgow 

Love B. 1 , Cook A. 1 , Husband J. 1 , Milton E. 1 

1 The Prince & Princess of Wales Hospice, Glasgow, 


Aim: To develop culturally competent palliative care 

services 

Background: Glasgow’s population consists of a 

significant number of people of South Asian origin for 

whom many barriers exist to accessing services. 

Traditional hospice services have not always been 

seen as acceptable to this population. To improve 

access to palliative care services, a strategic and 

collaborative approach within Glasgow’s minority 

ethnic communities was required. 

Methods: A steering group was established, with 

representation from the multidisciplinary team, local 

ethnic communities and community healthcare 

partnerships. Awareness raising events were delivered 

across community groups, places of worship, cultural 

events, festivals, and local media. A nurse led drop-in 

service was implemented in a Sikh Gurdwara, Hindu 

Mandir, Islamic Mosque and an independent 

community centre. The drop-in service offered 

confidential consultation on issues relating to illness, 

treatments, referrals and support to both patients and 

families. Participant feedback was obtained. Ethnicity 

data was collected and analysed on new referrals to 

hospice services. 

Results: Public engagement events within each of 

the identified religious communities attracted an 


audience of approximately 200 at each event. 

Volunteers from the minority ethnic population were 

recruited to support the promotion of the project in 

their local areas.Local minority ethnic community 

elders participated in the development of a translated 

information booklet. A small increase in referral rates 

from ethnic minority communities has been 

noted.The drop-in service was well received averaging 

4 consultations per session. 

Conclusions: Relationships with minority ethnic 

communities were strengthened raising awareness of 

palliative care services. Potential misconceptions and 

barriers were addressed.Educational initiatives 

provided an understanding of cultural needs in order 

to provide culturally competent services. 

Funding: Prince & Princess of Wales Hospice 



Protocol for Fatigue for Outpatients with 

Cancer in a Palliative Care Unit 

Molinaro M. 1 , Physiotherapy Team 

1 National Cancer Institute of Brazil, Palliative Care 

Unit (Ambulatory), Rio de Janeiro, Brazil 

Patients with Fatigue are priority, specially for 

physiotherapy approach. The aim of this study was 

help an organization of service of an interdisciplinary 

team of Palliative Care ambulatory, introducing a 

physiotherapy protocol for fatigue. 

Method: First a literature review was done and after a 

routine program, including 6 minutes walk test 

monitoring vital signs, and using Visual Analogical 

Scale (VAS) for fatigue and Karnofsky Performance 

Scale (KPS). After this a protocol was done. 

Results: After a study of outpatients with fatigue, a 

protocol was done based on VAS related, and 

observing the KPS of patients. The protocol is: VAS 

Fatigue: 1-4 (early stage, in which prevention and 

early intervention with more intensive aerobic 

exercises will be done in rhythm), VAS Fatigue: 5 - 6 

(aerobic exercises, alternating with the optimization 

of energy expenditure), VAS Fatigue: 7 to 10 (light 

exercises with few repetitions, without resiswtance, 

isometrics and walk up 6 minutes, priorizing 

ventilatory exercises and breathing training, and 

maximum optimization on energy expenditure. 

Conclusion: After this program it was noticed a 

reduction of fatigue related for patients with 60% to 

70% KPS, and maintenance of VAS Fatigue from 

patients with 40% to 50% KPS. 



Discourses about Complexity from the 

Professional Perspective in Specific Palliative 

Care Teams 

De Miguel-Sánchez C. 1 , Duro-Martínez J.C. 2 , García- 

Baquero Merino M.T. 3 , Morillo-Rodríguez E. 4 , Noguera- 

Pascual A. 5 , Nuñez-Olarte J.M. 6 , Nuñez-Portela B. 7 , Ruiz- 

López D. 8 , Research Network, Oficina Regional de 

Coordinación de Cuidados Paliativos de la Comunidad de 

Madrid 

1 Centro de Salud Espronceda, Área 7, Palliative Home 

Care Team, Madrid, Spain, 2 Agencia para la 

Formación, Investigación y Estudios Sanitarios de la 

Comunidad de Madrid ‘Pedro Laín Entralgo’, Madrid, 

Spain, 3 Oficina Regional de Coordinación de 

Cuidados Paliativos, Madrid, Spain, 4 Hospital 

Universitario de la Princesa, Palliative Support Team, 

Madrid, Spain, 5 Centro de Cuidados Laguna, Palliative 

Care Unit, Madrid, Spain, 6 Hospital General 

Universitario Gregorio Marañón, Acute Palliative Care 

Unit, Madrid, Spain, 7 Centro de Salud Goya, Área 2, 

Palliative Home Care Team, Madrid, Spain, 8 Centro de 

Salud Legazpi, Area 11, Palliative Home Care Team, 


Aims: This study is part of a National and Regional 

Stategy for Health in Palliative Care. It is a part of a 

global research project about palliative care 

complexity, as a way to evaluate the model of care and 

resource locations for palliative care. 

The main objective is to establish a research team who 

involves the largest number of possible professionals 

(research-action) and to know the perspective of the 

different actors involved in Palliative Care in a health 

care network, health administration, specific 

palliative care professionals, nonspecific 

professionals, patients and their families. 

Methods: We chose a sample of different 

representative structural levels of care in our region 

(Palliative Home Care Teams, Hospital Support 

Teams, Acute Hospitals and Units of Intermediate and 

Long Stay in Public and Hospice-like) with the specific 

objective of knowing the perspective of the different 

specific palliative care team professionals. 

6 interviews were made with a close outline to the 

team leaders, 6 interviews to the complete team and a 

focus group with professionals from Hospice-like. 

These interviews were transcribed word for word and 

were analyzed for each member of the research group. 

Finally it was made a discussion with the lead 

researcher who used the “Atlas-ti” qualitative software 

for the final analysis. 

Conclusion: 

The coordination between Palliative Home Care 

Teams and Hospital Support Teams is very difficult, so 

we need to intensify the communication between 

them. 

The psychological care to patients and their families is 

one of the main problems to solve.The definition of a 

complex patient, it is not only by the difficult 

symptom to control but also the lack of family and/or 

social support. 

The limited knowledge of health professionals and 

users about the provision of palliative care is relevant. 



Individualized Palliative Daycare Fulfil 

Patients Expectations 

Kilersjö A. 1 , Bäckström C. 1 , Ericson A. 1 , Ericson K. 1 , 

Eriksson A.-C. 1 , Henson M. 1 , Skale B. 1 

1 Kungsbacka Hospital, Kungsbacka, Sweden 

Background: Many patients, who are registered to 

the Palliative Care team in Kungsbacka, have episodes 

of hospitalization, often caused by anxiety and 

insecurity. Focusing on one´s own situation often 

results in a passive life with concerns and anxiety, 

decreased social interaction and lower activity. 

Patients need support, security, help to focus on life, 

creative activities to ease the pain and distracts from 

the serious thoughts about the end of life. Their 

families also have a great need for support. 

Method: Patients are invited to the Palliative Daycare 

activities twice a week, in which it is offered 

physiotherapy with exercise, relaxation and massage, 

creative activity with the opportunity to express 

themselves in different ways, water exercise and 

group discussions. Patients have the opportunity to 

participate in activities according to their own needs 

and activities are formed by the individuals involved. 

The activities are continuously evaluated through 

interviews. 

Results: Many express that it’s a comfort to participate 

regularly in the day activities and being able to easily 

meet the members of the Palliative Care team. Creating 

together in a group provides a spirit of community and 

is a good opportunity for conversations and to express 

emotions. Having fun together provides both 

togetherness within the group and strength to cope 

with everyday life. The support of the Palliative Daycare 

will likely reduce the need for hospitalization. 

Palliative patients are continuously in need of being 

able to receive support in their life. Conversations 

with others in the same situation give perspective on 

their own existence and the possibility of processing 

difficult and important issues. The content of the 

exercise must be varied, so that each individual can 

take part in what is suitable for him or her. It must also 

be easy to regularly change the content. The flexibility 

of the activities means that each individual´s needs 

can be met in a professional manner. 



Emergency Admissions in Palliative Care 

Patients May Not Always Be Appropriate 

Kolflaath J. 1 , Aass N. 2 , Hansen S.B. 2 , Loekken A.O. 3 , 

Hjermstad M.J. 2 

1 Ostfold Hospital, Fredrikstad, Anestesiology, 

Fredrikstad, Norway, 2 Oslo University Hospital, Oslo, 

Norway, 3 Osfold Hospital, Fredrikstad, Fredrikstad, 

Norway 

Background: Palliative care cancer patients are 

often admitted to hospital as emergency cases. This 

may not always be necessary and may conflict with 

patients’ wishes. Objectives were to examine the 

reasons for emergency admittances, treatment given 

and patients’ opinions regarding site of treatment. 

Methods: 50 emergency admissions of a total of 44 

patients (M 27/F 17) were included from 2 hospitals. 

ESAS was completed upon admission and before 



discharge. All went through a structured interview. 

Medical data were obtained from the hospital records. 

Results: Mean age was 69 (52-89). 13 patients were 

living alone. Gastro-intestinal cancer (17 patients), 

lung cancer (11) and urological cancer (7) were most 

prevalent. 50% of the emergency admissions were 

administered by a hospital doctor, 24% by a GP or the 

GP on call. All but 2 patients were admitted from 

home and 28 were discharged to go home. Mean 

length of stay was 9.2 days (1-38). 29 of the patients 

had been discharged within the past month. 5 of the 

patients died while hospitalized while 16 died within 

one month. Pain (36%), dyspnea (25%), nausea 

(12%), and poor condition (12%) were the principal 

reasons for admittance to hospitals. The highest mean 

ESAS scores were found with tiredness (6.3), appetite 

loss (5.7) and xerostomia (5.2). The mean ESAS pain 

scores were reduced by 50% from admissions to 

discharge. 22 patients went through simple 

procedures only; hydration, bladder catheterization 

and O2 therapy. 13 patients would have preferred 

treatment at home or in a nursing home, provided 

that the treatment quality was similar. 

Conclusion: Emergency admissions may represent 

stressful events for the patients and their family (offhours, 

delays, unfamiliar doctors etc). A significant 

amount of our patients needed simple procedures. 

Better primary care may reduce the need for emergency 

admissions, thereby corresponding better with the 

patients’ desires as revealed in the present study. 



Alternatives to Conventional Hospitalization 


Bayoll-Serradilla E. 1 , García-García J.A. 1 , Fernández- 

Sánchez M.L. 1 , Vega-Sánchez J. 1 , Ruiz-Acosta A. 1 , López- 

Alonso R. 1 

1 Department of Internal Medicine. Valme University 

Hospital, Seville, Spain 

Objective: To describe the alternatives to 

conventional hospitalization in a palliative care unit. 

Methods: The Palliative Care Unit of Internal 

Medicine (MIC) is a support unit for advanced cancer 

and non-cancer patients and it includes a 70-beds 

hospital and an alternative to the conventional 

hospitalization of patients such as day unit, home 

visit and phone calls. Each palliative care team is 

made up of a nurse and a doctor. In the present study, 

we analyze the activity of the palliative care team 

excluding the conventional hospitalization from 

January 2009 to September 2010 in southern Spain. 

Results: During the study period, 18397 episodes were 

collected. Of them, 12291 (67%) belong to 2494 

patients, 5696 (31%) and 420 (2%) were phone calls, 

day unit activity and home visit, respectively. Phone 

call was answered by a doctor in 55% of cases. The 

cause of phone call was a new clinical symptom in 47% 

and to comment the results of blood samples in 26%. 

After a phone call, in 2296 (19%), 4354 (35%), 33 

(0,3%) and 323 (2,6%) of the cases the patient was 

referred to our clinic, family doctor, emergency and 

hospital admission, respectively. Among outpatients 

clinic, 2210 (39%) episodes were evaluated by a nurse. 

In these subjects, blood samples was collected in 1279 

(58%) of cases, blood transfusion in 91 (4%), parenteral 

drug was administrated in 248 (13%), culture was done 

in 171 (8%) and cure of chronic ulcer or any kind of 

injury in 781 (35%) patients. Paracentesis for refractory 

ascites was done in 92 (4%) patients. 

Conclusions: Alternatives to conventional 

hospitalization facility the continuity in the 

assistance among palliative care patients and to 

prolong the stay at home during more time. It seems 

to get better the quality of life of patients with 

advanced disease. New studies will be useful to 

evaluate the cost of these units and to compare with 

conventional hospitalization. 



Specialist Palliative Care 7 Days a Week: Is it 

Effective? 

Parr P.M. 1 , Whyte D.G. 1 , Dilnot B. 1 , Renshaw J. 1 , Hill J. 1 , 

Nugent S. 1 

1 University Hospital Aintree, Specialist Palliative Care, 


Background: The National Institute for Clinical 

Excellence (NICE) guidance in 2004 for ´supportive 

and palliative care for adults with cancer´ 

recommended that “face to face assessments were 

131 


(Thursday)


(Thursday) 


available for all people with cancer at home or in 

hospital 09:00-17:00, seven days a week”. Prior to this 

the Hospital Support Team provided a 9-5, Monday - 

Friday service, with out of hours telephone advice 

available from the local specialist palliative care 

inpatient unit, and face to face assessments by a Dr in 

palliative medicine in exceptional cases. 

In order to provide this additional service, 

supplementary funding and manpower was required. 

The service commenced in September 2009 and after 

nine months an audit to evaluate its effectiveness was 

undertaken. 

Aims: To demonstrate the effectiveness of the new 

service. 

To provide an accurate report to the Palliative Care 

Integrated Clinical Network (ICN) on the progress of 

the the additional service since its introduction in 

September 2009. 

Method: A prospective audit, completed by the 

Clinical Nurse Specialist (CNS) on duty during the 

weekend or bank holiday, over 11 weekends and one 

bank holiday. A proforma was completed for every 

face to face assessment or telephone advice call during 

this period. 

Results: A total of 134 patients were included in the 

audit, including 125 (94%) face to face assessments, of 

which 109 (81%) where known to palliative care 

services and 24 (18%) were new referrals. 

50 (37%) of total referrals made by ward staff, of 

which 20 (32%) of those were made by the acute 

assessment areas. 

Of the 134 patients referred 37 (28%) died on that 

admission, 35 (26%) were discharged home, 24 (18%) 

were transferred to the local hospice, and 44 (33%) 

remained under the care of the palliative care team 

beyond the weekend. 

Conclusion: 7 day working has been felt to be 

effective and appropriately utilised. Further study is 

needed to determine its role in patient outcomes. 



‘Like Flies around a Jam Pot’: The Lived 

Experience of People Affected by Advanced 

Disease who Are Receiving Multiple Primary 

Care Services 

Hardy B. 1 , King N. 1 , Firth J. 1 , Rodriguez A. 1 

1 University of Huddersfield, School of Human and 

Health Sciences, Huddersfield, United Kingdom 

Background and aims: Patients with advanced 

disease will spend the majority of their last year of life 

within primary care, having contact with various 

services. This may include GPs, various community 

nurses, nurse specialists, Macmillan and Marie Curie 

nurses, social workers, allied health professionals and 

many others. 

This study aimed to explore the lived experience of 

patients and their lay-carers who are receiving 

multiple services within a primary care context. 

Design and methods: A phenomenological 

approach was taken. Participants were included if 

they met the Gold Standards Framework Prognostic 

Indicator Guidance for identifying advanced disease, 

or were a lay-carer for someone with this diagnosis. 

Twelve patients with varying conditions and eight 

lay-carers took part in hermeneutic interviews which 

utilised the Pictor technique. Interviews were 

recorded and transcribed verbatim. Transcripts were 

analysed using Template Analysis to thematically 

explore the text. 

Findings: Participants reported having a complex 

network of services involved. Participants were aware 

of interagency tensions and felt caught between 

services who offered conflicting advice and similar care 

provision. The value of services varied according to the 

relationships that participants formed with individual 

staff. Where strong and continuous relationships were 

formed participants would use these individuals to 

access the help they required, even when they 

identified that this may not be the ‘appropriate’ person 

to utilise. Either patients or their lay-carers would take 

on responsibility for managing and maintaining up to 

date information about the patient’s health issues and 

their service contacts to enable effective information 

sharing amongst their network of services. These 

findings have implications for both service design and 

individual clinicians when considering their 

relationships with patients and their families. 



Unpicking the Threads: Collaborative 

Working amongst Generalist and Specialist 

Nurses in the Provision of Supportive and 


King N. 1 , Melvin J. 1 , Brooks J. 1 , Wilde D. 1 

1 University of Huddersfield, School of Human and 

Health Sciences, Huddersfield, United Kingdom 

Research aims: To examining how specialist and 

generalist nurses work with each other and with other 

professionals, carers and patients in providing 

supportive and palliative care to cancer patients. 

Objectives: 

• To examine how specialist and generalist nurses 

interact to provide supportive and palliative care to 


• To compare this with services for patients with long 

term conditions. 

• To examine collaborative working between nurses, 

other health and social care providers and patients 

and carers. 

• To draw lessons for future good practice through the 

involvement of nurse participants in the 

interpretation of emerging findings. 

Study design & methods: Theoretically this 

research takes the position that professional roles and 

identities are defined through the ways in which 

individuals interact with the social world they 

inhabit. The study used a semi-structured interview 

methodology, in one geographic area in England, and 

incorporated the Pictor technique, a reflective tool we 

have developed to explore collaborative working. 

Sample 

Community nurses n=35 

Acute sector nurses n=20 

Patients n=8 

Carers n=8 

Other key stakeholders =20 

The final stage will use focus groups with participants 

to critically examine emergent findings and consider 

their implications for policy and practice. 

Results: Findings from analysis of the first phase of 

interviews (community staff) show that nursing roles 

strongly shape relationships with other professionals. 

These networks are quite consistent across conditions 

(cancer and LTCs) for Community Matrons but differ 

more for District Nurses. Further analysis of this data 

and examination of the acute staff interviews is 

ongoing. 

Conclusion: While recognising the particular 

contributions of different groups of nurses, our 

findings suggest the need for greater integration of 

nursing services, both within and across sectors. The 

major organisational changes happening in the UK 

health system can offer opportunities to move in this 

direction. 



Intersubjectives Relations Facing Pain and 

Death in a Palliative Care Team 

Vieira E.G. 1,2 , Assmann S.J. 3 , Crepaldi M.A. 4 

1 Universidade Federal de Santa Catarina, Doutorado 

Interdisciplinar de Ciencias Humanas, Florianopolis, 

Brazil, 2 Centro de Pesquisas Oncologicas CEPON, 

Fonoaudiologia, Florianopolis, Brazil, 3 Universidade 

Federal de Santa Catarina, Departamento 

Interdisciplinar de Ciencias Humanas, Florianopolis, 

Brazil, 4 Universidade Federal de Santa Catarina, 

Departamento de Psicologia, Florianopolis, Brazil 

Referring to the topic of friendship in these times, 

especially in the professional context of health care, is 

pertinent as we realize the difficulty of establishing 

interpersonal relations within the work environment, 

caused by a competitiveness and individualism that 

permeate contemporary society. Professional 

relations have been marked by an impersonal nature 

that favours a technical and instrumental rationality. 

Within this context, the general aim of this study is to 

comprehend intersubjective relations established in a 

palliative care team when confronting pain and 

death; verifying the occurrence -or not- of an 

experimentation of a new form of professional life 

and of community, such as friendship; as well as 

verifying the work continuity of the aforesaid 

spanning a period of almost twenty years. It is a study 

of a qualitative nature developed through a case 

study, which employed a couple of strategies for the 

collection and analysis of data: semi structured 

interviewing and naturalistic observation. The 

analysis of the data was based on Bardin (1977) from 

which four thematic nucleuses were inferred. 

In this study, it was ascertained that the experience of 

friendship in professional life can enable other forms 

of sociability that go beyond the specific technicalprofessional 

competence of each individual, which 

would bring a new outlook to intersubjective relations 

within the contemporary professional context; in so 

far as our existence not being doomed to simply 

becoming an unbridled personal and professional 

competition with one another, as preached by current 

ethics. On the contrary, it is encouraging knowing 

that building friendship relations and looking after 

oneself, is still possible and preferable, as only in this 

way we know how to place ourselves as human 

beings, being partners with and supportive of all other 

human beings, taking responsibility in the definition 

of what we are, what we want to be and who we want 

to coexist with. 


Withdrawn 



Emergency Oncology in a NHS District 

General Hospital: The Case for an Acute 

Palliative Care Service 

Gale S. 1 , Johnson J. 2 , Trotman I. 1 

1 Mount Vernon Hospital Cancer Centre, Northwood, 

United Kingdom, 2 Lister Hospital, Stevenage, United 


Introduction: While many acute hospitals have 

access to specialist palliative care (SPC) services it is 

unknown whether patients are referred in an 

appropriate and timely manner. This study 

investigates a cohort of patients with cancer in an 

acute general hospital to consider their mode of 

admission, symptom burden and access to SPC. 

Method: The electronic records for all patients in an 

acute NHS Hospital Trust were obtained and those 

with a diagnosis of cancer identified. Their inpatient 

stay was mapped and case records were obtained to 

ascertain clinical details of the diagnostic, treatment 

and discharge pathways. 

Results: Of the 765 hospital beds on the date of 

census, 708 (93%) were occupied and of these 103 

(14%) had cancer. Sixty-two (60%) were admitted as 

an emergency. Overall there were 62M and 41F 

average age 70 years (range 18-93) and median length 

of stay 13 days (range 1-84 days). Emergency 

admissions tended to be older (average age 72 years 

range 40-93) and have longer stays (median 19 days 

range 2-78). From case note review 14/51 (27%) were 

not known to have cancer at the time of admission. 

Seventeen died during their hospital stay, 16 were 

emergencies. 45/91 were documented as “palliative” 

but only 21 (47%) were seen by the SPC team and less 

than half (41%) of those who died were referred to 

SPC. The emergency patients were admitted with a 

wide spectrum of symptoms including, pain (45%), 

shortness of breath (27%), nausea/vomiting (22%) 

and weakness (20%). 

Conclusion: These findings show that cancer 

patients make up a large proportion of acute hospital 

inpatients and many are admitted as emergencies. 

They often have complex management problems and 

multiple symptoms. There is an apparent unmet need 

for SPC services which arguably might have a 

significant part to play in decision making, symptom 

management, discharge planning and terminal care. 

We believe there is a case for SPC to become better 

integrated as part of the acute admission team. 



Ensuring a Contribution to Sustainable 

Development and Sustainable Livelihoods 

through the Development of Palliative Care 

Service Delivery Organisations 

Wagner A. 1 

1 HPCA, Cape Town, South Africa 

The current debate on development pays specific 

attention to the concepts of capacity building , 

sustainability , organisational development , 

sustainable development and sustainable livelihoods. 

These concepts are also applicable to the development 

of palliative care services. To address this need and 

ensure high quality palliative care these important 

concepts must become the principles on which we 


develop the services. These principles are best 

achieved when included in an organisational 

sustainability framework This presentation will focus 

on the the development of sustainable palliative care 

services through a process of continuous assessments 

and development. In this process the concepts are 

used to develop sustainability guidelines that 

ultimately ensure sustainable development and 

sustainable livelihoods. There will be a discussion on 

the guidelines developed to assist capacity building , 

assessment tools used to measure initial 

organisational capacity , development plans 

implemented to address areas of need and the 

successes achieved through this process of 

development. This process can successfully be applied 

to any size organisation and the development process 

is managed by the organisation itself and not by the 

developers. Some significant successes will be 

discussed and shared. 



Palliative Care Nurses: How Do they Spend 

their Time and what Perception They Have, 

Regarding the Quality of Care 

Bragança J. 1 , Nunes L. 2 , Barbosa A. 3 

1 Faculdade de Medicina da Universidade de Lisboa, 

São Pedro do Sul, Portugal, 2 Escola Superior de Saude 

do Instituto Politécnico de Setúbal, Setúbal, Portugal, 


Lisboa, Portugal 

The present rhythm at which knowledge and health 

technologies evolve becomes, no doubt, a constant 

challenge to all professionals. It makes them be alert 

to the evolution of new care solutions in every health 

care area. 

To nursing, Palliative Care (PC) is intrinsic to its daily 

practice. To ally science and art in order to provide a 

care that sustains, supports and comforts is the 

responsibility of all nurse professionals. 

It was found one study concerning the way health 

care professionals use their time, in PC, referring to 

how specialist nurses spent their time, in one of the 

first community PC services. The results obtained 

were: 55% of their work was in direct contact with the 

patient and/or family, 20% in contact with 

medical/organizational staff and bureaucracy, 17% 

travelling and 8% in bereavement support. 

After realizing that there was no study of this kind 

performed in inpatients units the interest of doing it 

aroused. 

The methodology chosen was quantitative, a 

prospective descriptive study level I/II. The sample 

was non probabilistic, of convenience, starting from a 

population of nurses of a PC unit. 

In order to answer the research question: “In which 

interventions do PC nurses spend their time?” 

participative direct observation of the sample was 

performed, with data collection through a specific 

designed instrument. To analyze the perception 

nurses have of how they spend their time and the 

quality of their interventions, a self applied 

questionnaire will be used in all the population. 

This data is still under analysis therefore the results 

will only be presented at the time of the free 




Palliative Care Protocol Coordination 

Romero F. 1 , Serrano S.L. 2 

1 Riotinto Hospital, Trabajo Social, Minas de Riotinto, 

Spain, 2 Riotinto Hospital, Minas de Riotinto, Spain 

Introduction: Based on the Death with Dignity Act 

and the Andalusian Palliative Care Plan, we consider 

multidisciplinary approach in caring for the 

terminally ill patient. 

From this perspective, the Social Worker of Riotinto 

Hospital began this activities with the aim of 

coordinating with health and non- health 

professionals and institutions involved in the process 

of health and social care. Facilitating the expression in 

the decision-making through their wills and avoid 

situations of high vulnerability to the patient at home. 

Objectives: To provide patients and families an 

integral and comprehensive care from the time of 

diagnosis, so they can decide, with the guarantee of 

care, setting the action plan in collaboration with 

them. 

Methodology: 

+ Approach was performed in coordination with the 

Palliative Care Unit, 

district social workers, local corporations, 

independent centres, associations. 

+ Protocol in terminally ill patients and families. 

+ Coordination with associations, public institutions, 

associated institutions. 

Results: 

+The beginning of Action protocol from the “Shared 

Coordination Model”. 

+Presentation volunteer training agreement. 

Income processing priority in Residential Assisted 

Conclusions: 

+ Coordination protocol begins from patient´s 

discharge. 

+ Development strategies for coordination with other 

institutions 

+ Support and assist the patient and family 



Current Status of Palliative Care - Legal, 

Clinical, Education and Research Issues 

Rukhadze T. 1,2,3 , Alibegashvili T. 1 , Aladashvili T. 1 , 

Turkadze M. 1 , Todadze E. 3 , Sesiashvili E. 3 , Kordzaia D. 1,2 

1 Georgian National Association for Palliative Care, 

Tbilisi, Georgia, 2 Faculty of Medicine of Iv. 

Javakhishvili Tbilisi State University, Tbilisi, Georgia, 

3 Palliative Care Service at National Cancer Centre of 

Georgia, Tbilisi, Georgia 

The aim of the research is to identify the current 

status of palliative care as a sum of the legal, clinical, 

education and research issues, outline the challenges 

and the ways of its further development. 

Design: All legal, clinical, education and research 

issues in 2004-2010 underwent to analysis. 

Results: 

Legal issues:Parliament of Georgia has approved the 

amendments in Laws of Georgia supporting 

development of Palliative Care System and 

harmonizing the opioids availability, accessibility, 

prescription with International standards and 

Palliative Care (PC) recognized as non-separated part 

of Continuing Medical Aid; PC guideline was 

approved by Ministry of Health (MOH); PC is 

recognized as a subspecialty; The PC Georgian 

National Association and the Office of coordinator of 

PC prepared the PC National Plan for 2011-2015, 

which is under discussion of MOH and Health Care 

Committee of Parliament of Georgia. 

Clinical practice: Home-based and inpatient PC 

was initiated; funded by Governmental Budget and 

are implemented in Georgia; The PC programs for 

AIDS patients funded by Global Found. 

Education: PC was incorporated in the educational 

curriculas; Several editions of PC Handbooks for 

medical and nursing students are issued. 

Research: In the last years several research projects 

in PC were funded by “Open Society - Georgia 

Foundation” and Georgian National Science 

Foundation; Several papers and abstracts are 

published in International PC Journals and Congress’ 

Abstract books. 

Conclusion: The main challenges on the way of PC 

development are lack of: 

adequate information among the society as well as 

potential stakeholders and decision-makers 

knowledge among healthcare professionals 

finances 

Prospective: Increase in the educational activities 

and informational campanies in cooperation of 

international organizations and experts; To involve 

more donors and sponsors and stakeholders seem to 

be the real ways of further development of PC in 

Georgia. 



Development of Legal System and Facilities 

Concerning Hospice and Palliative Care in 

Slovakia 

Dobríková P. 1,2,3 , Križanová K. 2,4 , Veselska M. 5,6,7 

1 Faculty of Healthcare and Social Work Trnava 

University, Palliative Care Unit, Trnava, Slovakia, 

2 Association of Hospice and Palliative Care of Slovakia, 

Board of Directors, Palárikovo, Slovakia, 3 Refugium, 

n.o., Hospice, Trenńín, Slovakia, 4 National Oncology 

Institute, Palliative Care Unit, Bratislava, Slovakia, 

5 DOM Bozieho Milosrdenstva, n.o. (Hospice), Board of 

Directors, Banska Bystrica, Slovakia, 6 Comenius 

University, Faculty of Roman Catholic Theology, 

Bratislava, Slovakia, 7 Comenius University, Faculty of 

Management, Bratislava, Slovakia 



In this contribution we would like to describe actual 

and previous situation concerning of legal standards 

in Slovakia which significantly influenced the 

development of hospice and palliative care 

movement in our country. 

From the historical point of view dying during the 

communism led to isolation of dying persons into the 

hospital where they were suffering alone behind the 

white screen and the visits of their relatives were 

prohibited. After the year 1989 some civic 

associations tried to implement the hospice 

philosophy to the awareness of the public but they 

did not have any support in the legal system. The 

term hospice entered the first time into our legal 

standards in the year 2000. In this year was also 

created Association of Hospice Care of Slovakia and in 

the year 2003 this civic association changed on the 

Association of Hospice and Palliative Care of Slovakia 

which tries to support the idea of hospice and 

palliative care. Until the year 2002 Slovakia was the 

only one from the Central European countries 

without hospice and with only one palliative care unit 

in National Oncology Institute which was opened in 

1995 by Kristína Križanová, who has continually 

managed it as a head physician. Home hospice care 

teams and also free standing hospices started to 

operate from the year 2002. 

In this article we would like to inform about actual 

Slovak hospice and palliative care situation, about 

financing of the hospices and palliative care units, 

about the approach of insurance companies, legal 

standards in this area and we try to offer you also the 

real conditions in existing hospices focused on the 

services, staff and their possible education at Slovak 

universities or other institutions. We want also focuse 

on the number of volunteers because it is an idea 

which step by step naturalises in Slovakia. The older 

generation, however, generally sees volunteer in a 

negative light, probably as a result of the experiences 

that dates back to the socialism. 



Current Situation of a Palliative Care 

Development in Czech Republic 

Kabelka L. 1,2 , Slama O. 3 

1 Czech Society for Palliative Medicine, St. Joseph´s 

Hospice and Pain Centre Rajhrad, Rajhrad, Czech 

Republic, 2 Czech Society for Palliative Medicine CMA 

J.E.Purkyne, St. Joseph´s Hospice and Pain Centre 

Rajhrad, Rajhrad, Czech Republic, 3 Masaryk Memory 

Institute, Brno, Czech Republic 

There is realized a high quality palliative care in Czech 

Republic but its accessibility is not wide and for 

majority of dying people. Sociological researches 

show a paradox of the society will for dying in a 

natural patient environment (80% of respondents) 

and a real situation when ¾ of all deaths takes place in 

hospitals, nursing homes or senior houses. Since 1995 

till 2010 most of palliative care in Czech Republic was 

offered by hospices. Contemporary there are 14 

inpatient and several mobile hospices in CR 

(www.hospice.cz). Most of them offer holistic, 

multidisciplinary palliative care with specialists in 

medical, psychological, social and spiritual field. 

Palliative care in elderly is a big issue of Czech 

palliative medicine - the main discussed areas: 

• syndrome of dementia (prevalence 250 000 cases) 

• care organization in nursing homes (cca - 40% 

subfunded, mised types of diagnosis-very different 

goals of care) 

• primary care (discontinuity with hospital care, poor 

efectivity of home care servicies, only several mobile 

hospice care teams) 

• The wide discussion about nutrition, hydratation, 

personal and law ability of decision is going on 

Czech Society for Palliative Medicine prepared the 

National Strategy Plan in Palliative Medicine for the 

Advisory board of the Government of Czech Republic 

in September of 2010. The main paths and goals of 

the plan are included in our „after-Budapest 

commitment“: 

• Improve an access to QPC („I can be with my 

incurable disease in the place I want to be“) 

• Improve a continuity of care 

• Improve and extend the general and specialized 

knowledge and skills in palliative care - for doctors, 

nurses and other professionals 

• Improve a financing of care 

• Improve and change a „taboo“ of dying process 

The oral presentation will describe an actual situation 

in the spring 2011 and expected steps. 

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The Use of Technology in a Palliative Care 

Unit 

Gomes L.C. 1 , Souza J.C.D.S. 2 , Paula S. 2 , Sevilla M. 2 

1 INCA, Niteroi, Brazil, 2 INCA, Rio de Janeiro, Brazil 

When patient are defined to palliative care and their 

KPS< 50% they can choose to stay home with their 

families while a specific multidisciplinary care team is 

being responsible for them. 

Our home care service is responsible for about 200 

patient, receiving 80 new patients every month with a 

survival rate about 30 days. The team is organized in 

groups with a established area of action in order to 

improve patient/family caregivers adherence and 

offer best symptom control. 

Their first visit occur in approximately 5 days when 

patient/caregiver profile is defined , main symptom 

are identified and a therapeutic plan is made. 

In our country the distances are high and team loose a 

precious time going to patients house and back to 

unit. It was essential to create a framework to improve 

patient care and to help the management of the 

service. 

At about one year ago was made a technological 

improvement with the acquisition of a new 

informatics program and move technology . 

Nowadays is possible to access at patient home 

important information about their diagnosis, 

previous treatment, results of exams ,scale ( ESAS ) of 

symptom control and is possible to request all patient 

needs including material for tumors wound and 

pressure sore care, material of comfort, medications. 

Also is possible to request the visit of any of the 

professionals of the team , defining the ideal period of 

return and specific needs. 

As a management framework it function as an audit 

tool of the service making possible achievement of a 

gold standard care based on numbers of production 

and quality , and specific actions. 

It´s technology improving management, treatment 

and symptom control in a Palliative Care Unit. 



Audit of Admissions to Marymount Hospice 

between 12/08/10-04/10/10 

Cleminson A. 1 , O’ Brien T. 1 , Clifford M. 1 

1Marymount Hospice / St Patrick’s Hospital, Cork, 

Ireland 

Background: Hospice Drs. perceived admissions 

arrived late to the hospice, resulting in Drs. working 

overtime to complete admissions. This potentially 

had implications, for the hospice budget and moral. 

Objectives: An audit was carried out to establish: if 

patients were arriving late, if origin and mode of 

transport were affecting arrival time and how soon 

after arrival patients were admitted. 

Method: A standardized data collection sheet was 

created with an aim to record information on all the 

admissions for the duration of the audit. Drs. were to 

record information after every admission. Data 

recorded on the sheet included: date, place of origin, 

mode of transport, time of arrival, admission start and 

completion, grade of Dr and comment box. 

Results: 43 admissions, 

Day of admission: Mondays 16(36%), Tues 6(14%), 

Wed 5(12%), Thur 5(12%), Fri 9(21%), Sat /Sun 2(5%) 

Place of origin: hospital 26(60%), home 16(37%), 

nursing home 1(2%) 

Mode of transport: ambulance 28(65%), car 

15(35%) 

Time between arrival and admission start: < 

1hr 21(49%), < 2 hrs 32(74%), < 3 hours 36(84%), < 

4:15hrs 41(95%), unknown 3(7%) 

Admission start time: 2(5%) before 13:00, 14(33%) 

before 15:00, 23(53%) before 16:00, 28(65%) before 

17:00, 43(100%) before 19:00 

Admission completion: 2(5%) before 16:00, 

27(63%) before 17:15, 33(77%) before 18:00, 39(91%) 

before 19:00, 43(100%) before 20:30 

Grade of Dr: SHO 24(56%), REG 15(35%), SPR 4(9%) 

Average time between arrival and admission 

start: 1:07 hrs 

Average Admission Time: 1:57 hrs 

Conclusions: Mode of transport, and origin did not 

contribute to late arrival. Most patients did not arrive 

late. Most admissions were completed within working 

hrs. 33% of admission ran into overtime with a cost of 

18 hrs overtime, excluding weekends. Comments 

suggest delay in patients being seen related to ward 

duties lunch and not knowing patient had arrived. 

Assigning a Dr. to be contacted on patient arrival and 

prioratise admission may reduce this delay. 



Coordinating Supportive and Palliative Care 

for Patients with Lung Cancer 

Bayly J. 1,2 , Guerin M. 2 , Beattie V. 2 

1 Woodlands Hospice Charitable Trust, Liverpool, 

United Kingdom, 2 Aintree Hospitals NHS Foundation 

Trust, Liverpool, United Kingdom 

Lung Cancer is the most common cause of cancer 

death. Late presentation is significant with one year 

and five year survival rates of 28% and 8% 

respectively. Patients report high unmet physical, 

psychological and practical needs. Physical and 

psychological de-conditioning impacts on symptom 

burden, functional independence, quality of life, 

response to treatment and utilisation of health care 

resources. A cross agency multi-professional team 

(lung cancer nurse specialists, specialist palliative care 

physiotherapists, occupational therapists, Citizens 

Advice Health Outreach Officers and volunteers) has 

been established to deliver an innovative model of 

after care for patients newly diagnosed with lung 

cancer. The Lung Cancer Health & Well -Being Clinic 

uses a structured holistic assessment process to 

facilitate speedier access to supportive care 

rehabilitation services, financial and welfare advice 

and specialist palliative care. TImely referrals 

alongside Information resources and advice about 

signs and symptoms to look out for help patients 

maximise their own health & well being through 

treatment and into the post treatment phase, 

supporting self-management. Patients access future 

support via an allocated key worker. The clinic has the 

potential to replace a traditional medical follow up 

appointment and become an integral part of the lung 

cancer care pathway. Patients attending the clinic to 

date identify a range of needs including physical 

symptoms (n=18, 90%), psychological distress (n=14, 

70%) practical and financial concerns (n=11, 55%) 

and information needs regarding self-management 

and support services n=15, 75%). 8/20 patients were 

referred for specialist palliative care at the local 

hospice. 3/20 were referred to generalist therapy 

services. 11/20 had consultations with the Citizens 

Advice Health Outreach Officer. 12/20 patients 

receive on-going supported self-management in the 

lung cancer nurse led clinic. Patient reported 

outcomes are being evaluated. 



The Dynamic of a Palliative Care Team in the 

Hospital 

Flor de Lima M.T. 1 , Ferreira C. 2 , Amaro N. 2 , Borges P. 2 , 

Botelho O. 2 , Jordão A.T. 2 , Pires C. 2 , Moura M. 2 

1 Hospital Divino Espírito Santo, Palliative Care Team, 

Ponta Delgada, Portugal, 2 Hospital Divino Espírito 

Santo, Ponta Delgada, Portugal 

Aims: To describe the dynamic of a young Palliative 

Care Team and his purposes. 

Methods: From the capacities of the members (3 

Doctors - Internal Medicine, Pain Medicine, 

Rehabilitation, 2 Nurses, 1 Psychologist, 1 Social 

Worker, 1 Spiritual Assistant) and the aims of the 

team, we design: 

The activities of the team with patient and family in 

the center; The concerns of the team: organization, 

objectives, multidisciplinary help, training support, 

lifelong learning, prevention of burnout; The field of 

action, at first inside the hospital, supporting all the 

specialties and, in a second stage, handling to provide 

help to other Palliative Care Teams and the 

interrelations with the community teams, developing 

various protocols; The ultimate aim: team wellbeing, 

patient satisfaction, dying with dignity. 

Result: We present a group of seven circles where we 

represent all of our fields of actions. 

We put patients and their families or caregivers at the 

concern center of the Team’s intervention where the 

first screening, after a referral of a prior medical 

specialist, is performed by one doctor (and/or a nurse) 

to detect the patient’s main problems, to decide 

which technicians the patient will benefit. 

The team concerns of organization of their activities 

are the next circle and after the interactions within 

the hospital several specialties and with the 

community. 

Conclusion: As the aim of this team, and of the 

Regional Government, is to bring palliative care to the 

various health care centers, where there are other 

teams that will work in coordination with the 

Hospital’s Team, with this kind of organization we 

can spread the message of Palliative Care at the 

Hospital, teach other teams to organize their work, 

define protocols for the various organizations or 

institutions from the community, and be the 

reference for Palliative Care in our region. 



Madrid Integrated Palliative Care Unit: A 

Regional Organizative Assistential Model 

Garcia-Baquero Merino M.T. 1 , Dominguez Cruz A. 1 , Ruiz 

López D. 1 , Carretero Lanchas Y. 1 , Martínez Cruz M.B. 1 


Consejería de Sanidad de la Comunidad de Madrid, 


Aim: Identify the best way of coordinating end of life 

care taking into account patients, families and 


Methodology: Identifying factors to consider: ü 

Mapping of resources: patient geographical situation 

to enable timely care avoiding unnecessary journeys.ü 

Teams working across care settings.ü Improved 

information and communication within 

professionals.ü Prevention of emergency admissions 

through A&E.ü Continuity of care using local health 

care services to support the patient/ family unit 

extending palliative care culture.ü Promoting nurses´ 

role within palliative care.ü Palliative care doctor 

consulting role.ü Address the spectrum of patients 

and families´ needs; health and social care 

coordination.ü Periodic evaluation and 

documentation of needs to match level of 

intervention to need complexity.ü Specific 

volunteer´s services.ü Fluid communication between 

agents within the care unit supported by innovative 

technology. 

Result: Primary Care, Palliative Hospital Support, 

Day Care, Outpatient services, Inpatient services, 

Bereavement services, Community based, Centralized 

Out of Hours and others are the services patients need 

access to. Our model combines all of them to give 

answer to the different demands that might come up 

in at the end of life. It is an integrated model 

incorporating an established circuit to help access 

multiprofessional palliative care based on needs and 

their complexity. Professionals must now be 

encouraged to organize themselves in dynamic teams 

that are always open to change and to incorporate 

experience and knowledge in all its components. It is 

a priority to enable professionals to identify and 

evaluate palliative care needs, appropriately respond 

to them and to know when to ask for advice and refer. 

Conclusion: It was not possible to identify one 

single service capable of addressing all needs, all of the 

time. This model combines all services to address ever 

changing needs. 



Further Development of Palliative Care 

Provision in Ivano-Frankivsk Region of 

Ukraine 

Andriishyn L. 1 , Tymoshevska V. 2 , Shapoval K. 2 

1 Hospice of Ibano-Frankivsk, Ivano-Farnkivsk, 

Ukraine, 2 International Renaissance Foundation, 

Kyiv, Ukraine 

Inpatient Ivano-Frankivsk Hospice for 30 beds has 

been operating for 13 years already. Patients at 

terminal stages of oncologic diseases are admitted and 

provided care here. There are no other types or forms 

of palliative support for these patients. Our 

observations helped to identify core problems related 

to palliative care provision for the patients living in 

the region 

- Most patients are not able to get quality end-of-life 

care; 

- The patients with oncology diseases living in rural 

areas are especially vulnerable in terms of getting 

adequate care; 

- Children with incurable diseases are not provided 

with adequate palliative care; 

- Healthcare staff generally is not aware of what 

palliative care is as well as about methods and 

opportunities of the care provision from the 

perspective of the up-to-date concept. 

Therefore, in 2009 we in cooperation with the 

Healthcare Department developed our own program 


geared at broadening the access to palliative care for 

broader groups of population, especially from rural 

areas. 

The main areas of this program are aimed, primarily, 

at disseminating information on the essence, 

methods and forms of palliative care; training 

healthcare staff and volunteers; reorganizing some 

beds in the general healthcare facilities’ system as 

hospice beds. 

Thus, the program succeeded in: 

1. launching of a training and methodology center at 

our hospice already in 2009, where 103 students took 

their studies (with the support of the International 

Renaissance Foundation) 

2. starting training seminars for family doctors at the 

chair of post-graduate education at the national 

medical university since September 2009 

3. issuing an order of the Chief Healthcare 

Department in early 2010 and starting the work on 

preparing premises and opening an inpatient hospice 

for TB/HIV/AIDS patients. The creation of this hospice 

unit is supported by Network of PLWH) 

4. planning to create 2 more inter-district inpatient 

hospices in Horodenka and Dolyna districts. 



Development of Regional Plan for Improves 

Palliative Care Programme in Rural Area in 

Catalonia Spain 

Espinosa J. 1 , Gómez-Batiste X. 1 , Elias T. 2 , Caja C. 3 , 

Lasmarias C. 1 , Bullich I. 3 , Albanell N. 4 

1 Institut Català d’Oncologia, WHO Collaborating 

Centre for Palliative Care Programmes, L’Hospitalet, 

Spain, 2 Health Regional Government Alt Pirineu i Aran, 

Planning and Quality Unit, Tremp, Spain, 3 Ministry of 

Health of Catalonia, Social-Health Department, 

Barcelona, Spain, 4 Fundació Sant Hospital de la Seu 

d’Urgell, Palliative Care Unit, Seu d’Urgell, Spain 

The Catalonian Palliative care public health 

programme was proposed by the WHO in the 1990s, 

and has since been developed, to ensure the palliative 

care services. The programme has shown good results 

in terms of coverage, effectiveness, efficiency and 

satisfaction. 

During 2010 the Health Department and the 

Observatory “QUALY” of End of Life of Catalonia, are 

developing a specific Plan for improve the attention 

of end on life in special rural area, localized in the 

region of Alt Pirineo i Aran. 

Methodology: The process have 3 phases. 

Phase I: To creation of nominal group of PC’s 

professional (Doctors, nurses, psychologies, social 

worked and managers). To unite of terminology and 

the new concept about patients in situation of end of 

life (SEL) and methodology for implement a PCP. 

Phase II: Quantitative evaluation of demographic 

aspect, prevalence of people in situation of end of life 

and PC resources in the region. Qualitative evaluation 

of patient and family’s needs and areas for improve 

the PCP. 

Phase III: To make a implementation action for 

regional Health government. 

Results: 

Population: 69.598 habitants; Mortality: 10.75 / 

1.000 habitants; prevalence of PC patients: 243; total 

PC patients at year: 265. 

Resources of PC: 3 home care team, 3 PC units, and 

3 hospital support team. 

Qualitative evaluation: The region need mainly 

intervention in several area: To develop a strategy for 

identification SEL patients; to build a special PC unit 

for complexity patient; to include a PC’s professional 

into primary care services; to implement a model of 

uninterrupted and emergency service for SEL patients; 

to improve % of no-cancer patients coverage; 

coordination action plan between hospital and 

primary services; to implement specially training 

programme in PC. 

The plan was presented to health regional 

government in October 2010 and they are 

implementing the actions for the next time (2011- 

2012). 



Organisation and Funding of Palliative Care 

in the Netherlands: Needs for Improvement 

Weststrate J.C. 1 , Jansen W.J. 1,2 , Hartog den A. 1 , van Tol 

C. 1,3 , Rhebergen A. 4 

1 Palliactief (NPTN), Bunnik, Netherlands, 2 VU 

University Medical Center, Amsterdam, Netherlands, 

3 Hospice Kuria, Amsterdam, Netherlands, 4 Agora 

National Centre for Support for Palliative Care, 

Bunnik, Netherlands 

Background: During the last decade palliative care 

has developed rapidly in the Netherlands. Due to the 

Dutch healthcare system a lot of private initiatives are 

started, but also resulted in a huge variety in 

providers. Three main ways of funding palliative care 

can be distinguished. 

Aim: How to improve organisation and funding of 

palliative care from the perspective of care providers 

as well as patients? 

Method: Care providers perspective: questionnaires, 

interviews and expert panels were used to identify 

subjects that need improvement. 

Patient perspective: Questionnaires and 

interviews among patients and surviving relatives 

were used to identify bottlenecks they experienced. 

Results: 

(1) Care providers as well as patients/surviving 

relatives report a number of similar subjects: ‘transfer 

of patients’, ‘information’ and ‘accessibility of 

palliative care’. 

(2) From all responding patients/surviving relatives 

- 79% reports to be well informed about the medical 

aspects 

- 43% experienced problems in the way palliative care 

is provided; 

- 55% report a lack of attention for psychological 

support 

- 38% report a lack of attention for spiritual care 

- 25% report the additional costs of palliative care as a 

problem. 

(3) From the surviving relatives 24% report that the 

patient did not die at the preferred place of death. 

Conclusion: However local networks palliative care 

were started with the aim to improve information 

about local initiatives and to establish collaboration 

between the local providers regarding transfer of 

patients. A substantial part of the respondents report 

problems to get the right information on the right 

time and the quality of patient transfer. There is a lack 

of attention reported for the psychosocial and 

spiritual dimensions of palliative care. This can be 

caused by the absence of palliative care as a defined 

and insurable product, and the absence of 

accessibility and reimbursement of psychosocial and 

spiritual care at home. 



Building the Future Palliative Medical and 

Nursing Workforces: A Critical Review and 

Evaluation of the State-wide Initiatives 

Developed in Victoria, Australia over the Past 

2 Years 

Boughey M. 1 

1 Centre for Palliative Care, St Vincent’s Hospital 

Melbourne, Fitzroy, Australia 

The auspicing of two newly created state-wide 

training and workforce development initiatives, the 

Victorian Palliative Medicine Training Program 

(VPMPT) and the Victorian Palliative Care Nurse 

Practitioner Collaborative (VPCNPC) within the same 

palliative care education and research organisation 

has achieved considerable success over the past 2 

years. Though separately funded and independently 

developed programs, both initiatives have been 

developed in response to the need to build and 

sustain a viable specialist workforce as the future 

demands for palliative care continue to grow. The key 

elements of each program model will be presented 

and the analysis of the results of the program reviews 

and evaluations will be discussed, demonstrating 

how, at this time, both programs have managed to 

achieve many of their key objectives. A discussion of 

the important lessons learned, the effectiveness of the 

programs being managed within the one 

organisation, the future and ongoing planned 

developments and the importance of the evolving 

synergies between the programs will be highlighted. 



Developing Palliative Care Service in One of 

the Rural Regions of Moldova 

Carafizi N.- 1 , Chiose M.- 2 

1 Charity Foundation for Public Health ‘Angelus 

Moldova’, Hospice ‘Angelus’, Chisinau, Moldova, 

Republic of, 2 Association ‘Angelus Taraclia’, Hospice 

‘Angelus Taraclia’, Taraclia, Moldova, Republic of 



Taraclia is the region situated in the south of 

Moldova. It has the population of 45 786 inhabitants 

with the predomination of Gagauzian and Bulgarian 

ethnic groups. The regional center, the town of 

Taraclia, has 15 000 inhabitants. 

In accordance with the statistical data in 2008 there 

were 462 cancer patients registered in the region. Out 

of them 102 made new cases and 54 cases represented 

the 3 rd -4 th clinical stages which made 11.7% out of all 

the registered cases. 

The Association “Angelus Taraclia” was founded in 

2007 as an independent non-governmental, nonpolitical 

and not-for-profit organization. Its main goal 

was to create a new system of medico-social and 

psycho-emotional support provided to incurable 

cancer patients and their families in Taraclia region. 

Since October 2009 the Association has been 

providing palliative care service to incurable cancer 

patients and their families living in the area. It is 

provided by the hospice mobile team in patients’ 

homes, by telephone and at the office. The team 

employs a doctor, a nurse and a social worker. 

The project was run in tight collaboration, direct 

involvement and permanent monitoring by the 

Charity Foundation for Public Health “Angelus 

Moldova” which activates in palliative care domain in 

the capital of the country. The medical team of 

“Angelus Taraclia” was trained by the Foundation’s 

staff. 

During the year 92 incurable patients and their 

families got qualified palliative care and social 

assistance. The served patients were provided with 

medications, medical accessories and consumables. 

The Association as well developed and run several 

fundraising activities and charitable performances in 

order to collect money to support incurable cancer 

patients and their families and to raise public 

awareness towards palliative care in the region. 

Despite the difficulties existed in rural regions the 

project was considered by the local community and 

national experts as a successful pilot-project and 

sustainable for the region. 



An Oncology Palliative Care Unit 

Organization 

Gomes L.C. 1 , Dutra J.M. 2 , Rocha I. 2 , Oigman B. 2 , 

Nascimento I.C.L. 2 , Pereira K. 2 

1 INCA, Niteroi, Brazil, 2 INCA, Rio de Janeiro, Brazil 

In Oncologic Palliative care three main aspects are 

important in patient plan of care: 

- Prognosis while defining main symptoms and their 

control in aim to anticipate complications based on 

tumors natural history and the best symptom control. 

- Family caregivers have to be identified and trained in 

order to be capacitated to afford patient care 

(symptom control, wounds and pressure sore care) 

considering their KPS and their right to stay home 

with families considering caregiver burden. 

- Therapeutic adhesion considering polipharmacy 

and adherence to drug regimens. 

In our Service of Palliative Care, patient without 

symptom control are treated in our Palliative Care 

Unit. Patient and caregivers are treated by a specific 

palliative care multidisciplinary team. 

The use of frameworks is fundamental in each 

approach. Each patient have their prognosis made in 

their admission based on Papscore instrument and 

main symptom are identified in order to define 

therapeutic plan control. Papscore A, B and C are 

present in 20%, 23% and 15% respectively. Symptom 

control are evaluated every morning with ESAS scale 

and our prevalent symptoms are: loss of appetite 

51%,drowsy 41%, shortness of breath 35%, tired 33%, 

sadness 28%, pain 28%, anxious 20%, wellbeing 20% 

and nausea 15% . Always when pain and dyspnoea are 

identified we the goal to achieve control ( reduction 

50%intensity ) in 24h. Family caregivers are supposed 

to answer to Zarit scale, and always burden is 

identified specific social and psychological support is 

offered. 

Tumor wound and pressure sore are present in 13% 

and 11% of the patients at admission. 

When patients are supposed to leave Hospital, 

adherence of drug treatment is evaluated and always 

low adherence is identified a pharmaceutics is 

supposed to approach caregiver. 

Every week team discuss goals and fails of each case in 

order to improve care, offer best symptom control, 

reduction of communications problems and burden 

of the team. 

135 


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Assessment of European Clinical Guidelines 

Concerning Treatment of Neuropathic Pain in 

Patients with Cancer with AGREE II 

Schalkwijk A. 1 , Piano V. 1,2 , Engels Y. 1 , Verhagen C. 1 , 

Hekster Y. 1 , Burgers J. 1 , Vissers K. 1 


Nijmegen, Netherlands, 2 Hopital Pasteur, Nice, France 

Introduction: In Europe, the majority of drugs used 

for the treatment of neuropathic pain have not been 

registered for cancer patients. Clinical practice 

guidelines (CPGs) are necessary for legal prescription 

of neuropathic pain medication in this patient group. 

Until now it is unknown if guidelines with clinical 

recommendations for neuropathic pain treatment in 

cancer patients exist and how these guidelines were 

developed. The study was performed in cooperation 

with the European Federation of the IASP Chapters 

(EFIC). 

Methods: All EFIC chapters and two NeuPSIG 

members of each country were approached in order to 

obtain the most recent information about the 

existence of CPGs concerning the treatment of 

neuropathic pain in cancer patients in their country. 

The definition of a CPG is that it has got clinical 

recommendations which are based on a systematic 

review. CPGs with at least one chapter about 

neuropathic pain treatment in cancer patients were 

assessed with AGREE II. The AGREE II evaluates the 

process of practice guideline development and the 

quality of reporting. 

Results: We sent questionnaires to 26 EFIC chapters 

and to 32 NeuPSIG members. 

The overall response rate to this questionnaire was 

87%. With the help of the answers, we were able to 

collect 54 guidelines from 18 countries. Eighteen 

CPGs contain a chapter about neuropathic pain 

treatment in cancer patients but only 10 CPGs 

fulfilled the in- en exclusion criteria. Results of this 

assessment will be available in December 2010. 

Discussion: The quality of the different CPGs 

according to AGREE II shows a wide variety. A specific 

CPG for the treatment of neuropathic pain in cancer 

patients does not exist. Recommendations for 

treatment of neuropathic pain in cancer patients can 

be found in CPGs about pain in cancer and in pain or 

neuropathic pain from other populations. 



How Does Pain Interfere with Palliative 

Patients’ Hope and Quality of Life? 


M.D.A. 5 


Leiria, Health Research Unit - Nursing, Leiria, 

Portugal, 2 Catholic University of Portugal, Lisboa, 

Portugal, 3 Hospital Pulido Valente, Lisboa, Portugal, 



Leiria, Health Research Unit, Leiria, Portugal 

Introduction: Palliative care aim to control Pain 

and improve quality of life (QOL) of patients living 

with chronic advanced illness. It is not clear how pain 

interfere with QOL and ints implications in patients 

hope. 

Aims: To identify pain, quality of life and hope in 

palliative patients; to analyze the relationships among 

pain, quality of life and hope. 

Design/methods: This correlational study uses a 

socio demographic / clinical questionnaire- numeric 

scale (0-10) to access pain intensity; Portuguese 

versions of Herth Hope Index (1-4) and MGill Quality 

of Life Questionnaire - 4 dimensions: Physical, 

Psychological, Existential, Support(0-10). Lower 

scores indicate worse hope and quality of life. Patients 

were recruited from Portuguese palliative care settings 

- inpatient, day units and home care. Study was 

approved by ethical committees and informed 

consent was obtained. 126 Portuguese patients 

participate in the study, mean age of 66,97(SD=11,9), 

mostly men (57,1%), diagnosed with cancer 

(81,7%),married (69,8%)and living with their families 

(85,7%). 97,6% felt supported by family. 

Results: Pain was referred by 34,1% of the patients 

(Mean=1,78; SD=2,86). Globally scored QOL as good 

(Mean=6,75; SD=1,88). Better QOL scores were in 

Support (Mean=8,36; SD=2,16)and worse were in 

Physical dimension (Mean=5,33; SD=2,48). Patients 

reveal good hope level (Mean= 3,21; SD=,48). To 

higher levels of Pain correlates lower Physical (p< 

,001) and Psychological QOL (p< ,01), implicating 

lower total QOL (p< ,05). All QOL dimensions are 

positive correlated to hope levels (p< ,001). There is no 

significant correlation between pain intensity and 

hope. 

Conclusion: Palliative patients experienced mild 

pain, which didn’t impede them to be hopeful. 

Patients with better QOL experience higher hope 

levels. Patients experience better QOL due to support 

and have worse QOL in Physical dimension. Pain 

interferes negatively with QOL, decreasing it mostly 

Physical and Psychological. 



Prolonged-release Oxycodone/Naloxone Is 

Effective and Well Tolerated in the Treatment 

of Cancer Pain 

Nolte T. 1 

1 Schmerz- und Palliativzentrum Wiesbaden, im 

Facharztzentrum MEDICUM, Wiesbaden, Germany 

Research aims: A prolonged-release (PR) 

oxycodone/naloxone combination reduces cancer 

pain and sideeffects such as opioid induced bowel 

function related symptoms and improves Quality of 

Life (QoL). A multicentre observational study assessed 

the efficacy, tolerability and QoL of 

oxycodone/naloxone PR in daily routine. 

Study design and methods: In the 4-week 

observational study data were recorded at 3 (plus 1 

optional) assessment visits. Patients started 

oxycodone/naloxone PR treatment with the first visit. 

Analgesic efficacy of oxycodone/naloxone PR was 

measured by changes in pain intensity (Numeric 

Rating Scale: 0 -10 = no pain - worst imaginable pain); 

QoL by scoring 7 parameters (general activity, mood, 

walking ability, normal work, social contacts, sleep, 

vitality) (0 - 70 = no limitation - worst limitation) with 

the Brief Pain Inventory Short Form. Bowel function 

was documented using the Bowel Function Index 

(BFI), a questionnaire for assessing opioid induced 

constipation (0 - 100 = none - very severe). The 

occurrence of bowel dysfunction related symptoms 

(such as reduced appetite, nausea, abdominal pain) 

was recorded. At study completion, physicians and 

patients assessed efficacy and tolerability. 

Results: A subgroup of more than 600 patients 

included in the study suffered from severe or very 

severe cancer pain, pre-treated with weak opioids or 

oxycodone alone. Average pain intensity and BFI 

improved significantly. Bowel function related 

symptoms reduced, QoL improved markedly. In the 

final assessment, the majority of physicians and 

patients assessed efficacy and tolerability as “very 

good” or “good”. 

Conclusions: Oxycodone/naloxone PR proved to be 

effective and superior tolerable in patients with severe 

and very severe cancer pain, pre-treated with weak 

opioids or oxycodone alone. The strong analgesic 

efficacy combined with improved bowel function 

markedly increased quality of life. 

Funding: The study was sponsored by 

Mundipharma GmbH, Limburg/Lahn, Germany. 



Attitudes to Opiate Prescribing in Palliative 

Care: The Impact of the Harold Shipman 

Murders 

Gardiner C. 1 , Winslow M. 2 , Ingleton C. 1 , Gott M. 3 , Hughes 

P. 2 

1 The University of Sheffield, School of Nursing and 

Midwifery, Sheffield, United Kingdom, 2 The 

University of Sheffield, Academic Unit of Supportive 

Care, Sheffield, United Kingdom, 3 The University of 

Auckland, School of Nursing, Auckland, New Zealand 

Background: Opioid therapy is the cornerstone of 

management of severe chronic pain in the field of 

palliative care. Despite the availability of consensus 

based guidelines, pain is often suboptimally managed 

and underestimation and undertreatment continues 

to be a problem. Recent research has identified 

concerns relating to the appropriate prescribing of 

opiates for palliative care patients and the influence of 

the Harold Shipman murders on prescribing practice 

in the UK. The aim of this study was to explore 

attitudes to opiate prescribing and the impact of the 

Shipman murders on opiate prescribing in palliative 

care in primary and secondary care settings. 

Methods: Focus groups were held with a total of 30 

health professionals involved in providing generalist 

or specialist palliative care in primary and secondary 

care settings in the UK. Recordings were transcribed 

verbatim and analysed using the principles of 

thematic analysis. 

Results: Findings revealed significant concerns 

relating to the appropriate use of opiates in palliative 

care, particularly within primary care settings. 

Concerns included a reluctance to prescribe high 

doses of opiates, issues relating to the use of opiates to 

control dyspnoea, negative connotations of opiates 

and the negative impact of the Shipman murders on 

prescribing practice. Generalist palliative care 

providers described a reluctance to take responsibility 

for opiate management, and required significant 

input and guidance from specialist palliative care 


Conclusion: Attitudes to prescribing opiates within 

palliative care have been significantly affected by the 

Shipman murders, particularly within primary care 

settings. Improved education and more extensive 

collaboration between generalist and specialist 

providers is crucial in order to increase the confidence 

of generalists in opiate prescribing for palliative care. 



A Randomized, Double-blind, Activecontrolled, 

Double-dummy, Parallel Group 

Study to Determine the Safety and Efficacy of 

Oxycodone/Naloxone Prolonged-release 

Tablets in Subjects with Moderate to Severe, 

Chronic Cancer Pain 

Ahmedzai S.H. 1 , Kremers W. 2 , Bosse B. 2 , Hopp M. 2 , Reimer 

K. 2,3 

1 Academic Unit of Supportive Care, University of 

Sheffield, Dept. of Oncology, Sheffield, United 

Kingdom, 2 Mundipharma Research GmbH & Co. KG, 

European Medical Science, Limburg, Germany, 

3 University Witten/Herdecke, Witten, Germany 

Objectives: To show that oxycodone/naloxone 

prolonged-release tablets (OXN PR) improve 

constipation and maintain analgesia, compared with 

oxycodone prolonged-release tablets (OxyPR) in 

patients with moderate to severe cancer pain. 

Study design/ methods: A randomized, doubleblind, 

parallel group 4 week study of 185 patients 

randomised to OXN PR (n=93) or OxyPR (n=92). The 

starting dose of oxycodone PR was based on the 

subject’s prior dose of opioid and was an equivalent to 

20 - 80 mg oxycodone PR at randomisation. During 

the Double-blind Phase a titration was permitted up 

to a maximum daily dose of 120 mg oxycodone PR. 

Eligibility required cancer pain needing continuous 

opioid treatment, which had constipation induced or 

worsened by opioid therapy. Efficacy assessments 

included the Bowel Function Index (BFI) (primary 

endpoint), Brief Pain Inventory Short - Form (BPI-SF) 

(co-primary endpoint), laxative and rescue 

medication use. Quality of life (QoL) and safety 

assessments were also conducted. 

Results: After 4 weeks, mean BFI score with OXN PR 

was significantly lower than with OxyPR (LSMean 

Difference: Δ=-12.36; p< 0.001). The reduction with 

OXN PR was clinically relevant. Mean total laxative 

intake with OXN PR was 20% lower than with OxyPR 

(p=0.1685). Mean BPI scores were similar for OXN PR 

and OxyPR (3.50 vs 3.52). Average use of analgesic 

rescue medication was low and comparable for OXN 

PR and OxyPR (1.30 vs 0.97 capsules/day; p=0.2168). 

QoL was stable and comparable; constipation scores 

improved more with OXN PR than with OxyPR. 

Overall rates of adverse events (AEs) were similar for 

OXN PR and OxyPR (68.4 vs 64.1%), and rates of 

serious AEs were low and comparable (5.4 vs 3.3%). 

Constipation was an inclusion criterion and therefore 

only worsening of constipation was counted as an AE. 

Conclusions: OXN PR provides superior bowel 

function in patients with cancer pain, compared with 

OxyPR and is well tolerated, without compromising 

analgesic efficacy. 

This study was funded by Mundipharma Research 

GmbH & Co KG 

Character count: 1841 (maximum 2000 characters 

including spaces and funding statement; excluding 

title and authors) 




Are Spiritual Distress and Physical Pain Interrelated 

in Cancer: A Prospective Study 

Brabin E.T. 1 , Stirling I. 2 , Campbell S. 2 , Grant K. 2 , Sherry 

K. 2 , Laird B. 3 

1 Beatson West of Scotland Cancer Centre, Glasgow, 

United Kingdom, 2 The Ayrshire Hospice, Ayr, United 

Kingdom, 3 Western General Hospital Edinburgh & 

Beatson West of Scotland Cancer Centre, Glasgow, 


Aims: Spiritual pain is advocated as an integral 

component of the “total pain” concept. Whilst 

spiritual care is a key component of the holistic care 

purported by palliative care, the relationship between 

spiritual distress and physical symptoms is less clear. 

Spiritual pain correlates with desire for hastened 

death, hopelessness and suicidal ideation. It has been 

suggested that spiritual distress may be related to 

physical pain, but there is limited evidence to support 

this. This study examines spiritual wellbeing and its 

relationship to physical pain. 

Methods: A prospective study of cancer patients 

within a Specialist Palliative Care Unit (SPCU). 

Patients completed the Brief Pain Inventory (BPI) and 

the Functional Assessment of Chronic Illness 

Therapy- Spiritual Wellbeing Scale (FACIT-Sp-12). The 

FACIT-Sp-12 is a psychometrically sound measure of 

spiritual wellbeing in patients with cancer. It is 

divided into a Meaning/Peace subscale and a Faith 

subscale. The relationship between FACIT-Sp-12 

scores and pain was analysed. 

Results: To date 20 patients have been recruited 

however recruitment is ongoing. Preliminary results 

show that among 20 patients (median age 66) the 

median total FACIT-Sp score was 35 (IQR = 20-16) and 

median subscale scores for Meaning/Peace and Faith 

were 25 and 10 respectively. The median total score 

for BPI was 54 (IQR= 75-42). There was a significant 

inverse correlation between total BPI score and total 

FACIT score (r=-0.459, p=0.048) and between total BPI 

score and Meaning/Peace subscale score (r=-0.473, 

p=0.041). 

Conclusion: The results indicate that SPCU patients 

with increased pain have greater levels of spiritual 

distress. These findings support the biopsychosocial 

model of pain. SPCU patients with high pain scores 

should be actively screened for spiritual distress and 

offered appropriate counseling when it is identified. 



The Barriers to the Use of Oral Morphine in a 

Hospital Setting in the Developing World 

Dunn J. 1 , Leng M. 1 , Namukwaya E. 1 , Nwogu E. 2 

1 Makerere University, Palliative Care, Kampala, 

Uganda, 2 Yale University, New Haven, CT, United 

States 

Aims: The aims of this study were to determine the 

knowledge, attitudes and beliefs surrounding the use 

of oral morphine by doctors, pharmacists and 

dispensers in a hospital setting in the developing 

world and to establish the possible barriers to 

morphine use amongst the same group of 

participants. 

Study design: This study was a mixed methods 

design, carried out in two hospital settings, one a 

national referral hospital and the other a regional 

referral hospital in sub-Saharan Africa. The first part 

involved the use of a questionnaire completed by 

doctors and dispensers looking at knowledge, beliefs 

and attitudes towards morphine prescription. The 

second part involved qualitative interviews with 

doctors of all specialities and grades, and pharmacists 

and dispensers involved in dispensing morphine, 

aimed at establishing the barriers to morphine use. 

Inclusion criteria: doctors, pharmacists and dispensers 

who agreed to complete the questionnaires.For the 

qualitative interviews: purposive sampling 

interviewing doctors of all grades and specialities.All 

dispensers and pharmacists working in the hospital 

settings were approached for interview. Exclusion 

criteria: those who declined to be interviewed. 

Results: The qualitative interviews will be completed 

by the end of 2010. Results from the questionnaires 

have shown that there is good knowledge about 

morphine use with some misconceptions related to 

side effects and agreement that morphine availability 

is limited in the hospital setting which restricts it use. 

Provisional results of the qualitative interviews have 

shown that the main barriers to morphine use are 

availability and expectations that the visiting team 

from the hospice will prescribe morphine. 

Conclusion: This study suggests that the main 

barrier to morphine use in the hospital setting in the 

developing world is availability of morphine. There 

appears to be good knowledge about its use and 

willingness to prescribe and dispense oral morphine 

when available. 



Pain Treatment of Agitation in Patients with 

Dementia: A Systematic Review 

Husebo B.S. 1,2 , Ballard C. 3 , Aarsland D. 4,5 

1 University of Bergen, Public Health and Primary 

Health Care, Bergen, Norway, 2 University of Bergen, 

Kavli Research Centre for Dementia, Bergen, Norway, 

3 King’s College London, Wolfson Centre for Age- 

Related Diseases, London, United Kingdom, 

4 University of Bergen, Stavanger University Hospital, 

Stavanger, Norway, 5 University of Oslo, Akershus 

University Hospital, Oslo, Norway 

Research aims: Advancing age is associated with 

high prevalence of both dementia and pain in the end 

of life in nursing home (NH) patients. Dementia is 

frequently accompanied by distressing behavioral and 

psychological symptoms, including agitation and 

aggression. The etiology of agitation is multifactorial 

and may be challenging to differ from delirium. It has 

been suggested that un-diagnosed and untreated pain 

may contribute to agitation in people with dementia. 

If this is correct, individual pain treatment could be of 

benefit in ameliorating agitation and other behavioral 

changes in people with dementia. The objective of 

this article is to conduct a systematic review of studies 

of whether pain medication can improve agitation in 

people with dementia. 

Methods: A systematic search of the PubMed and 

Cochrane databases for the period 1992-2010 was 

performed, using dementia, agitation, aggression, 

depression, behavioral disturbances, BPSD, pain, pain 

assessment, pain treatment, pain management, and 

analgesics as search terms. Inclusion criteria were: 

prospective studies including patients with dementia, 

interventions focusing on pain reduction, inclusion 

of a control condition, and outcome measures 

including agitation or other related behavioral 

disturbances. 

Results: Only 3 controlled trials were identified; all 

were cross-over trials, including small sample sizes (< 

50). Findings were inconsistent, and although some 

correlations were reported, these did not support the 

hypothesis that pain management reduced agitation. 

Conclusion: There is a profound dearth of rigorous 

studies of the effect of pain treatment in patients with 

dementia and agitation. The available studies do not 

support the hypothesis that pain management 

reduces agitation in NH patients with dementia. 

Randomised, controlled parallel-group studies are 

needed. 



An Evaluation of Behavioural and Verbal 

Report Pain Assessment Tools in Long Term 

Care 

Kaasalainen S. 1 , Zwakhalen S. 2 , Hadjistavropoulos T. 3 , 

Verreault R. 4 , Akhtar-Danesh N. 1 

1 McMaster University, Hamilton, ON, Canada, 

2 Maastricht University, Maastricht, Netherlands, 

3 University of Regina, Regina, SK, Canada, 4 Université 

Laval, Quebec City, QC, Canada 

Aims: Pain management in long term care has been 

recognized as a serious problem worldwide, 

particularly related to the challenges of assessing pain 

in residents who have dementia. The purpose of this 

study was to conduct a psychometric evaluation of 

four pain assessment tools with long-term care 

residents. 

Design: This measurement study utilized a repeated 

measures design to examine the inter-rater reliability 

of two behavioural observation tools (i.e., PACSLAC, 

PACI), and the concurrent and construct validity of 

these two tools along with two other verbal report 

tools (i.e., Present Pain Intensity; Numerical Rating 

Scale) for use with LTC residents with and without 

dementia. A convenience sample of 353 residents 

with varying levels of cognitive impairment from four 

LTC homes was used to collect data for this study. A 

repeated measures ANOVA was used to analyze the 

pain measurements across all points in time. 

Results: The interrater reliabilities for the two 



behavioral observation tools were good, higher 

during periods of activity (PACSLAC: r=0.80, p< 0.01; 

PACI: r=0.64, p< 0.01) than rest (PACSLAC: r=0.70, p< 

0.01 ; PACI: r=0.61, p< 0.01). Concurrent validity was 

also supported for all four pain assessment tools with 

the strongest correlations between the two 

behavioural observation tools (PACSLAC & PACI; 

r=0.77, p< 0.01) during an activity period and the 

lowest between the NRS and the PACI during rest 

(r=0.55, p< 0.01). 

Conclusions: These study findings offer support for 

the use of these tools in clinical practice, particularly 

for residents in long term care. Pain assessments are 

encouraged to be completed during periods of activity 

to improve the detection of pain and the accuracy of 

the pain assessments. This study was funded by the 

Canadian Institutes of Health Research and the 

Ontario Ministry of Health and Long Term Care. 



The Pharmacokinetics of Fentanyl Pectin 

Nasal Spray Are Not Affected by Seasonal 

Allergic Rhinitis in Healthy Subjects 

Fisher T. 1 , Smith A. 1 , Knight A. 2 , Rosen J. 3 

1 Archimedes Development Limited, Albert Einstein 

Centre, Nottingham Science and Technology Park, 

Nottingham, United Kingdom, 2 Evicom, London, 

United Kingdom, 3 Archimedes Pharma Limited, 

Reading, United Kingdom 

Aim: Fentanyl pectin nasal spray (FPNS) provides 

pain relief significantly faster than placebo and 

immediate-release morphine sulphate. This rapid 

onset of effect is due primarily to the benefits of nasal 

administration. However, in practice, rhinitis may 

influence these benefits. Consequently, the 

pharmacokinetics (PK) of FPNS were evaluated in 

subjects with induced allergic rhinitis. 

Methods: Healthy subjects with seasonal allergic 

rhinitis due to ragweed or tree pollen were evaluated 

in this open-label, three-way crossover design study to 

compare the PK and safety profiles of FPNS under the 

following conditions: symptomatic rhinitis untreated 

(Active), symptomatic rhinitis treated with 

oxymetazoline (Treated) and asymptomatic 

(Reference). Rhinitis was induced in an 

environmental exposure chamber. The order of 

exposure to these conditions was randomised and 

separated by a 14-day washout period. 

Results: Of 132 subjects enrolled, 37 developed 

symptoms of moderate rhinitis following exposure to 

ragweed and 17 to tree pollen. These subjects entered 

the randomised phase of the study as two separate 

cohorts, with 17 ragweed and 11 tree pollen-exposed 

subjects completing all three arms of the study. For 

both cohorts the Reference and Active groups 

generally had similar PK parameters after FPNS 

administration. However C max , AUC t and AUC inf of 

fentanyl were generally lower and T max appeared to be 

delayed in the Treated group compared with the 

Active or Reference group. Most adverse events (AEs) 

were mild; no severe AEs were reported. 

Conclusions: The clinical efficacy of FPNS is unlikely 

to be significantly affected by untreated allergic 

rhinitis occurring in a patient with an established 

effective dose of FPNS, but it may be impaired in a 

patient with rhinitis who concomitantly uses a 

vasoconstrictive decongestant such as oxymetazoline. 




Reduction of Behavioural Disturbances by 

Pain Treatment in Nursing Home Patients 

with Dementia: Double Blind, Cluster 

Randomized Clinical Trial of Efficacy 

Husebo B.S. 1,2 , Ballard C. 3 , Sandvik R. 1 , Aarsland D. 4,5 

1 University of Bergen, Public Health and Primary 

Health Care, Bergen, Norway, 2 University of Bergen, 

Kavli Research Centre for Dementia, Bergen, Norway, 

3 King’s College London, Wolfson Centre for Age- 

Related Diseases, London, United Kingdom, 

4 University of Bergen, Stavanger University Hospital, 

Stavanger, Norway, 5 University of Oslo, Akershus 

University Hospital, Oslo, Norway 

Research aims: To test the hypothesis that 

individual pain treatment can reduce agitation in 

nursing home (NH) patients with moderate and 

severe dementia, a cluster randomized 8-week doubleblind 

controlled trial with follow-up assessment four 

weeks after end of intervention were performed. 18 

137 


(Thursday)


(Thursday) 


NHS in 5 municipalities in Western Norway were 

included. 

Study design and methods: 352 patients with 

moderate or severe dementia and significant 

behavioural disturbances were randomized to control 

or individual pain treatment. Participants, primary 

caregivers and the research assistant responsible for 

data collection were blinded to group assignment. 

Patients received individual stepwise pain treatment 7 

days the week for 8 weeks. Doses were consistent with 

the therapeutic efficacy and safety data of the drug 

manufacturer and previous research on paracetamol, 

morphine retard, buprenorphine plaster, and 

pregabaline in older patients with pain. If necessary, 

combination of the drugs was possible. The primary 

outcome was Cohen-Mansfield agitation inventory 

(CMAI). Secondary outcome measures were 

Neuropsychiatric inventory - nursing home version 

(NPI-NH), Mobilisation-Observation-Behavior- 

Intensity-Dementia-2 Pain Scale (MOBID-2), and 

Activities of Daily Living (ADL). 

Results: In the individual pain treatment group, 

significant differences of CMAI, NPI-NH and MOBID- 

2 scores were found, but not for ADL functioning. 

Conclusion: Individual pain treatment can reduce 

the severity of agitation in patients with moderate 

and severe dementia. With the exception of severe 

and dangerous symptoms, analgesics should be 

considered for this condition before initiating 

symptomatic treatment with antipsychotic drugs. 



To Be in Pain (or Not); A Computer Enables 

Outpatients to Inform their Physician 

Oldenmenger W.H. 1 , Witkamp E. 1,2 , Van der Boog 

T.H.M. 3 , Bromberg J.E.C. 4 , Huygen F.J.P.M. 5 , Van der Rijt 

C.C.D. 1 

1 Erasmus MC, Medical Oncology, Rotterdam, 

Netherlands, 2 Erasmus MC, Public Health, Rotterdam, 

Netherlands, 3 Erasmus MC, Information Technology, 

Rotterdam, Netherlands, 4 Erasmus MC, Neuro- 

Oncology, Rotterdam, Netherlands, 5 Erasmus MC, 

Pain Treatment Center, Rotterdam, Netherlands 

Aim: In the outpatient oncology clinic, patients’ pain 

intensity is poorly documented. Poor pain assessment 

has been identified as one of the major reasons for 

inadequate pain management. To improve 

outpatients’ pain management we started to make 

patients responsible for their own pain assessment by 

asking them to score their pain intensity on a 

touchscreen computer before they visited their 

physician. These scores were immediately integrated 

into the electronic medical record. In this study, we 

investigated how patients judged the initiative. 

Method: During two weeks we asked all patients with 

an appointment at the outpatient clinic, to fill in a 

questionnaire. In this questionnaire we asked patients 

how they judged the touchscreen initiative, whether 

they were able to handle the computer, why they did 

or did not fill in their scores, and if they had pain 

whether they had discussed the pain with their 

physician. 

Results: In total 471 patients responded (71%). 

Patients judged the initiative as good (68%) or 

moderate (29%); reasons given were because the 

physician could see the pain scores in advance of the 

appointment, a clear overview of the pain was 

generated and the pain treatment had improved. 4% 

of the patients did not agree because they did not 

have pain or did not see any advantage. Most patients 

(92%) were able to use the touchscreen computer 

independently. 73% reported filling in their pain 

scores every visit, because they found it useful or they 

were urgently asked to do so. Reasons why they did 

not always do so were that they did not have pain or 

that they sometimes forgot. Of the patients with 

moderate/ severe pain, 87% had discussed that pain 

with their physician. 

Conclusions: To improve pain management in the 

outpatient clinic, it is necessary to register patients’ 

pain intensity structurally. The majority of patients 

agree active participation in their own pain treatment 

whereby they are responsible for their own pain 

assessment. 



Strong Opioids Don’t Shorten the Survival 

Time in >65y. Palliative Oncological Patients 

Menten J.J. 1 , Deschutter H. 1 , Vannuffelen R. 1 , Clement P. 1 , 

Carpentier I. 1 , Research Palliative Care Leuven 

1 University Hospital, Radiotherapy-Oncology & 

Palliative Care, Leuven, Belgium 

Introduction: Health care givers fear that strong 

opioids have a life shortening effect. This study 

analyses the effect on survival time by different doses 

of opioids in palliative cancer patients above 65 years 

that died in a palliative care unit. 

Patients and methods: The inclusion criteria were 

≥65 years, far advanced cancer patients, admitted to 

our palliative care unit (PCU) up to 2- 2010 and died 

in the PCU. The medical charts of 1088 patients were 

analyzed. Demographic variablesage, disease-related 

characteristics ( tumor type, metastases, co-morbidity) 

, pain treatment (dose of opioids before, on admission 

and during hospitalization) and survival time in the 

PCU were registered. The doses of the different 

opioids were recalculated to oral morphine equivalent 

doses (OME). 

Results: The data of 1088 patients were studied: 979 

patients used opioids while 109 didn’t. Patients were 

stratified in 5 groups according to the maximum OME 

daily dose: none, < 60, 60-299, 300-599, 600-900 and 

>900 mg/day. There was no statistically significant 

difference in the patient characteristics between the 5 

patient groups. The median survival time was 10 days 

for opioid naïve patients (n = 109) and patients using 

60 - 599 mg OME /d (n = 689). The median survival 

time for patients treated with 600-900 mg/day (n =52) 

or >900 mg/d (n=82) was respectively 13.5 and 17.5 d. 

Patients with the lowest OME (< 60 mg/day - n = 144), 

opioids used in the last hours of life for symptom 

relief during the dying process, lived shortest (median 

6 d). The differences in survival time were highly 

statistically significant (p= 0,0001) 

Conclusion: This analysis contradicts any life 

shortening effect by strong opioids in probably the 

frailest cancer patient population. Doses of ≤600 mg 

OME didn’t change the survival time compared with 

opioid naïve patients, but patients with doses of 600- 

900 mg and >900 mg OME survived significantly 

longer while there was no difference in patient 

characteristics. 



An Exploratory Analysis on the Effectiveness 

of Four Strong Opioids in Patients with 


Corli O. 1 , Apolone G. 1 , Montanari M. 1 , Greco M.T. 1 , 

Villani W. 1 

1 Istituto di Ricerche Farmacologiche MARIO NEGRI, 

Milano, Italy 

Aim: This analysis, carried out in the context of a 

wider observational prospective study, tried to explore 

whether four WHO/step-III opioids (morphine, 

oxycodone, fentanyl, buprenorphine) had different 

effectiveness when using several different outcomes 

and endpoints. 

Methods: Two-hundred-fifty-eight cancer patients 

were monitored over a 3 weeks follow-up program. 

The analgesic efficacy was assessed using several 

effectiveness endpoints, such as pain intensity (PI), 

pain intensity difference (PID), proportion of nonresponders 

(NR) and full-responders (FR) subjects, 

percentage of switches and dose escalation. 

Results: Mean values of PID led to differences among 

opioids ranging from 10% to 30%. FR (PID ≥30%) 

were more frequent in buprenorphine-fentanyloxycodone 

groups than in morphine; NR (PID ≤0%) 

were variable. The percentage of switches resulted 

three times more frequent when using morphine than 

buprenorphine (24.4% vs. 8.6%). An increase of dose 

≥ 5% a day was observed in 33.3% of fentanyl patients 

vs. 15% of buprenorphine. As a whole, opioids show 

some different behaviors on the basis of the 

considered endpoints. 

Conclusions: The objectives of this study were to 

produce preliminary findings on which to design a 

further confirmative effectiveness RCT. However, the 

observed results, even if the small sample size and the 

nature itself of the study do not allow a definitive 

evaluation of the efficacy/effectiveness of the drugs, 

underline a certain degree of variability among 

opioids and address towards a correct planning of a 

comparative randomized clinical trial that is now 

underway in Italy. 



The New WHO Guidelines on Pharmacological 

Treatment of Persisting Pain in Children with 

Medical Illness: Main Issues and what Is Next? 




Objectives: The World Health Organization (WHO) 

developed guidelines for the treatment of persisting 

pain in children for health-care professionals and 

policy makers in order to remove educational barriers 

to the use of opioid analgesics. 

Methods: Recommendations were developed using 

GRADE methodology. The process consisted in 

defining the guidelines´ scope, retrieval and appraisal 

of the evidence and formulation of recommendations 

through a transparent process with experts from 

around the world. 

Results: The process resulted in the publication of 

the WHO Guidelines for Pharmacological Treatment 

of Persisting Pain in Children with Medical Illness. 

They contain clinical recommendations on 

pharmacological interventions and a health system 

recommendation. A Research Agenda recommends 

further research. 

The WHO pediatric pain treatment guidelines cover a 

wide range of types of pain beyond cancer pain. It is 

the first time that WHO recommends that all 

moderate to severe pain in children should be 

addressed. Treatment should be through a two-step 

approach: a non-opioid analgesic for mild pain and a 

strong opioid for moderate to severe pain. The latter 

should be titrated to the adequate dose. There is no 

room for the use of codeine. Investigation on efficacy 

and safety of other intermediate potency opioids is 

needed before considering their use and role in 

relieving pain in children. 

Conclusion: WHO Treatment guidelines on pain 

should enhance more adequate treatment of pain 

around the world. The WHO Guidelines on 

Pharmacological Treatment of Persisting Pain in 

Children with Medical Illness is a milestone to 

overcome educational barriers and policy barriers to 

access opioid analgesics for the pain relief. In order to 

be able to provide a meaningful update in about five 

years time, it is important that the scientific world 

invests in research on the identified knowledge gaps. 

Source of funding: US Cancer Pain Relief 

Committee, OSI and other non-commercial entities 



Prevalence, Characteristics and Management 

of Cancer Related Breakthrough Pain in Czech 

Republic (Resultes of PARMA Project) 

Slama O. 1 , Kabelka L. 2 , Lejcko J. 3 , Kozak J. 4 , Finek O. 5 , 

Duba J. 6 

1 Masaryk Memorial Cancer Institute, Brno, Czech 

Republic, 2 St Joseph Hospice, Rajhrad, Denmark, 

3 University Hospital, Pain Clinic, Plzen, Czech 

Republic, 4 University Hospital Motol, Pain Clinic, 

Prague, Czech Republic, 5 University Hospital, 

Oncology, Plzen, Czech Republic, 6 PARMA Project, 

Prague, Czech Republic 

Background: Studies conducted in different 

countries and settings have described cancer 

breakthrough pain (CBTP) prevalence ranging from 

40% to 80%. 

Aim: To describe the CBTP in out patient setting as 

for prevalence, clinical characteristics, treatment 

strategies used and patient satisfaction. 

Method: A survey among cancer patients treated by 

oncologists and palliative care and pain specialists in 

Czech Republic. Cooperating physicians distributed 

the questionary to unselected consecutive cancer 

patients in their office, who have been used for their 

pain the strong opioids. 

Results: 435 patients completed the questionary. The 

„average“ intensity.of baseline pain was 0-4/10 in 73% 

patients (group A) and 5-10/10 in 27% (group B). The 

prevalence of CBTP was 72% in groupe A, 89% in 

groupe B. The duration of the episode of CBTP was 0-15 

min in 9%, 16-30min in 18%, 31-45 min in 15%, 46-60 

min in 30% and more than 60 minutes in 28%. The 

number of CBTP episodes was 1-5 per week in 15%, 1- 2 

per day in 43%, 3-5 per day in 24%, more than 6 per 

day in 18%. The onset of pain was sudden in 24%, 

gradual within 5-15 minutes in 49% and gradual 

within more than 16 minutes in 27%. The intensity of 

CBTP was 0-4/10 in 6%, 5-6/10 in 44%, 7-8/10 in 39%, 

9-10/10 in 11%. The medication used for BCTP was oral 


morphine IR in 38%, oral NSAID in 21%, oral tramadol 

IR in 15%, parenteral morphine in 10%, transmusocal 

fentanyl in 3%, combinations in 21%. 76% of patiens 

were satisfied with the management of their CBTP 

(89% of those with BTP intensity 4-6/10, 71% of those 

with BTP intensity 7-10/10). 

Conclusion: CBTP is a very prevalent but 

heterogenous clinical phenomenon which could be 

meaningfuly assessed and managed only in context 

with the baseline pain. High proportion of patients 

was satisfied with CBTP management despite its 

prevalence and intensity. This phenomemon requires 

further research. 

The PARMA project was funded with unrestricted 

grant from NYCOMED. 



Evaluation of Pain Management 

Adequateness of Palliative Care Patients in 

Georgia 

Rukhadze T. 1,2,3 , Kordzaia D. 1,3 , Ozylkan O. 4 , Dzotsenidze 

P. 1,3 , Rukhadze M. 1 , Maglakelidze M. 2 , Alibegashvili T. 1 


Tbilisi, Georgia, 2 Palliative Care Service at National 

Cancer Centre of Georgia, Tbilisi, Georgia, 3 Faculty of 

Medicine of Iv. Javakhishvili Tbilisi State University, 

Tbilisi, Georgia, 4 Bańkent University, Adana, Turkey 

Development of Palliative Care (PC) as a system was 

started in Georgia about ten years ago. Currently 

several significant successful steps have been taken: 

Amended legislation, supporting and promoting to PC 

development has been approved; Georgian-language 

educational-methodological material in PC are 

prepared and issued; PC pilot programs were 

implemented with financial support of Governmental 

Budget; The Georgian National Association for 

Palliative Care and the Office of Coordinator of PC 

National Program were established; 

Aim: To support development of adequate pain 

management system in chronic incurable patients via 

recovering the deficit in knowledge and information: 

Reveal the barriers of adequate pain management 

caused by deficit of in knowledge and information of 

health care professionals (HCP), patients and their 

family members (FM); 

Reveal the barriers of adequate pain management 

caused by negative opinion of society toward opioids 

usage; 

Support the improvement of knowledge of HCP and 

Society in adequate pain management by preparation 

and delivery of educational-training courses and 

informational matherials; 

Methods: Resolution of objectives provided by using 

of questioning method.Elaboration of questionnaire 

performed correspondingly of international 

experience and WHO recommendations; The database 

created and analyzed. 

Results: 280 chronic incurable patients and HCP 

were interviewed. 

The educational-training and informational courses 

prepared for: 1) health care professionals; 2) patients 

and their FM and conducted in Tbilisi and Batumi (6 

and 2 courses correspondingly); 

Informational materials for society (flyers and presspapers) 

prepared and distributed; 

Conclusion: The problems of pain management of 

end-of life patients in Georgia should be caused by 

lacking of: 

1) legislative bases, 

2) list and forms of opioids and their availability, 

3) knowledge and experience of HCP and 

4) Opioidphobia of the society and HCP. 



Successful Dose Finding with Sublingual 

Fentanyl: Combined Results for 2 Open-label 

Titration Studies 

Nalamachu S.R. 1 , Howell J. 2 , Rauck R.L. 3 , Wallace M.S. 4 , 

Hassman D. 5 

1International Clinical Research Institute, Overland 

Park, KS, United States, 2ProStrakan Group, PLC, 

Clinical Development, Galashiels, United Kingdom, 

3Carolinas Pain Institute, Centre for Clinical Research, 

Winston-Salem, NC, United States, 4University of 

California, San Diego, CA, United States, 

5Comprehensive Clinical Research, Berlin, NJ, United 

States 

Background/aim: Sublingual fentanyl has been 

shown to be efficacious in the treatment of 

breakthrough pain (BTP) in patients with cancer, at a 

dose determined by individualised titration in each 

patient. The aim of this analysis was to determine the 

likelihood of identifying an effective dose of 

sublingual fentanyl tablet during initial dose-finding, 

and describe the relationship between effective dose 

and baseline opioid dose. 

Methods: Data were derived from 2 clinical trials 

(Study 1, n=131; Study 2, n=139) of sublingual 

fentanyl in patients with cancer-associated 

breakthrough pain (BTP). Both trials received IRB 

approval and comprised a 2-week titration phase and 

12-month maintenance phase. Initial dose was 100 

mcg, titrated to an effective dose (producing effective 

relief of all BTP episodes on 2 consecutive days) of 

100-800 mcg. Relationship of baseline patient 

characteristics to effective dose and titration success 

was determined using classification tree analysis with 

recursive partitioning. 

Results: 270 patients entered the titration phase. 

Mean baseline BTP opioid dose was 16.9±12.3 mg 

morphine equivalent, mean baseline around-theclock 

(ATC) opioid dose was 192.3±144.2 mg 

morphine equivalent, and mean baseline BTP/ATC 

ratio was 0.14±0.14. Across both studies, 174/270 

patients (64.4%) were successfully titrated to an 

effective dose (mean effective dose, 498.2±234.8 

mcg). Effective dose was not significantly correlated 

with either baseline pain severity or baseline ATC 

opioid dose. Success rates were higher in patients 

receiving ATC morphine equivalent doses < 425 mg/d 

compared with higher doses (69.3% vs 37.5%). 

Conclusion: Effective sublingual fentanyl dose for 

BTP dose was not significantly related to baseline pain 

severity or baseline ATC opioid dose; in accordance 

with other studies. Despite more stringent criteria 

defining an effective dose, 64.4% of patients achieved 

an effective dose of sublingual fentanyl. Study 

supported by ProStrakan and Orexo. 



Unpredictability of Doses of Intrathecal 

Fentanyl for Treatment of Cancer Pain 

Koyama Y. 1 , Koguchi K. 2 , Nishioka M. 2 , Ono K. 1 

1 Fukuyama City Hospital, Anes.Dept., Fukuyama, 

Japan, 2 Fukuyama City Hospital, Division of Palliative 

Care, Fukuyama, Japan 

Background: Intrathecal fentanyl has lower 

incidence of side effects such as nausea and itching 

than intrathecal morphine. Although relative potency 

of fentanyl is documented 75-125 to morphine, there 

are few data investigating the intrathecal potency 

compared fentanyl and morphine. 

Method: Five patients of severe pain of lower 

extremities and perineum with advanced anorectal 

cancer who need the opioid-rotation to fentanyl due 

to morphine-induced somnolence were enrolled. 

They had the catheterization intrathecally through 

the 4th lumbar interspace and administration of 

fentanyl for 24 hours continuously using the infusion 

pump. When analgesia was unsuccessful, intrathecal 

opioid was switched to morphine from fentanyl for a 

day to establish complete analgesia, followed by 

double doses of fentanyl of the previous day. 

Results: All patients could be achieved successful 

analgesia with 8 or 10mg/day of intrathecal morphine 

infusion. Relative potency of fentanyl to morphine 

(M/F ratio) revealed various value on each patient 

(Table). 

No.of Initial dose Final dose Dose of M/F 

case of fentanyl of fentanyl morphine ratio 

(mg/day) (F) (mg/day) (M) (mg/day) 

1 0.12 0.24 8 33.3 

2 0.6 3.0 10 3.33 

3 0.12 0.12 8 66.7 

4 0.6 1.2 10 8.33 

5 1.2 4.8 10 2.08 

[Table] 

Conclusion: We believe that this large variability of 

M/F ratio was produced by different solubility 

between fentanyl and morphine, and that the tip of 

catheter is very important for treatment of intractable 

cancer pain with intrathecal fentanyl. 





Challenges in Management of Cancer Pain in 

Patients Receiving Maintenance Methadone 

Therapy 

McLean S. 1 , Rowley D. 2 , O’Gorman A. 2 , Ryan K. 3 , 

McQuillan R. 3 

1 Our Lady of Lourdes Hospital, Drogheda, 

Department of Palliative Medicine, Drogheda, 

Ireland, 2 St. Francis Hospice, Community Palliative 

Care, Dublin, Ireland, 3 St. Francis Hospice, 

Department of Palliative Medicine, Dublin, Ireland 

Background: Methadone is a synthetic opioid used 

in the management of heroin addiction as 

maintenance methadone therapy (MMT). It may also 

be used as an analgesic agent. The management of 

pain in patients (pts) with cancer and who are on 

MMT may be challenging. 

Aims: We aimed to identify this cohort of pts within 

our practice; to identify pt characteristics; and to 

review the literature on the topic. 

Methods: We identified pts on MMT who were 

referred to our palliative care service from June 2006 - 

June 2010, and conducted retrospective chart reviews. 

Data were collected using a pre-prepared proforma on: 

diagnosis; prescribing patterns; difficulty in pain 

control; and outcome. 

Results: 12 pts were identified: 8 (66%) male; 4 (33%) 

female. Ages ranged from 24-62 years (mean 44 years). 

Primary diagnoses: HIV/AIDS related malignancy 

(30%) and solid malignancy (70%). 92% had 

documented pain at referral. 42% were not prescribed 

opioid analgesia at referral. Of pts prescribed opioid 

analgesia the daily oral morphine equivalent dose was 

5 - 2000mgs/day. 83% had documented difficulty in 

pain management. All pts required adjuvant agents, 

and one third required 5 or more analgesic agents. 2 

pts were documented as demonstrating ‘drug seeking 

behaviour.’ Baseline dose of MMT ranged from 30 - 

150mgs / day. Methadone was successfully used as an 

analgesic in one pt. Challenging factors identified in 

the literature are: comorbidities, e.g. benzodiazepine 

dependence, and psychiatric disorders such as 

anxiety; the pharmacology of chronic methadone use 

leading to refractoriness to analgesia from other 

opioids; and attitudes and perceptions including 

concerns regarding ‘drug seeking behaviour’. 

Conclusions: Management of pain in this cohort 

may be complex. Awareness of the pharmacological 

changes induced by MMT, and psychosocial factors 

influencing pain perception and behaviour is 

necessary. The use of methadone as an analgesic agent 

should considered. 



Adherence to a Prevention of Platinuminduced 

Polyneuropathy Using 6-month Oral 

Alpha Lipoic Acid 

Guo Y. 1 , Palmer L.J. 2 , Forman A. 3 , Fisch M. 4 

1 U T M D Anderson Cancer Center, Palliative Care and 

Rehabilitation Medicine, Houston, TX, United States, 

2 U T M D Anderson Cancer Center, Biostatistics, 

Houston, TX, United States, 3 U T M D Anderson 

Cancer Center, Neuro-oncology, Houston, TX, United 

States, 4 U T M D Anderson Cancer Center, General 

Oncology, Houston, TX, United States 

Background & aims: Platinum-containing 

chemotherapy induced peripheral neuropathy causes 

pain, and frequently becomes a dose-limiting factor 

for cancer treatment. The neurotoxicity appears to be 

irreversible; therefore prevention of neuropathy is 

necessary. Our aim is to determine if ń-lipoic acid 

(ALA, thioctic acid) can prevent peripheral 

neuropathy for patients receiving platinum. 

Methods: Adult patients were randomized to receive 

either 600 mg ALA or placebo three times a day for 24 

weeks. Neuropathy is measured by FACT/GOG-NTX 

score, and pain was measured by brief pain inventory 

(BPI). 

Results: Of two hundreds forty three patients 

randomized, 96 patients completed treatment for 24 

weeks. At baseline, the ALA (n =122) and placebo (n 

=121) groups were comparable for age (58±11, 60±11 

years old respectively, p=0.26), gender (51% and 49% 

male respectively, p=0.85), prior platinum exposure 

(p>0.99), FACT/GOG-NTX score and BPI score. At the 

24 week, only 43 evaluable patients remain in the ALA 

group, and 53 evaluable patients in the placebo group. 

Sixty five percent drop-outs were found in ALA group, 

and 56% drop-outs in placebo group (p=0.17). The 

reasons for drop-outs were: withdraw consent 

139 


(Thursday)


(Thursday) 


(57/147, 39%), refuse to take medication or noncompliant 

(35/147, 24%), lost follow-up (2/147, 3%), 

death (2/147,1%), change of chemotherapy regimen 

(8/147, 5%), physician decision (8/147, 5%), adverse 

effect (4/147, 3%), and other (31/147, 21%). 

Conclusion: Intensive schedules of oral agents may 

be particularly challenging in the symptom 

prevention setting. Strategies to gauge the preenrollment 

risk of non-adherence and monitor 

adherence is worthy of further exploration. 



Long-term Treatment Evaluation of Fentanyl 

Buccal Soluble Films in Breakthrough Cancer 

Pain Patients - An Interim Analysis 

Tagarro I. 1 

1 Meda Pharmaceuticals, Madrid, Spain 

Research aims: Long-term evaluation of a fentanyl 

buccal soluble film (Breakyl; BEMA delivery system) in 

the treatment of breakthrough cancer pain. 

Study design and methods: Open-Iabel, multidose, 

multicenter study in cancer pain patients under 

stable opioid regimen. The study comprised a titration 

period (up to 2 weeks), and an indefinite open-Iabel 

period with follow-up visits every 4 weeks, and within 

1 week of the final dose. 

Results: At the time of this analysis 220 patients had 

received at least one dose of the study drug. A total of 

56,644 pain episodes were treated in the open-Iabel 

period. The mean number of administered doses were 

328 per patient (average per patient 3/day). 

During the titration period, 3% of subjects 

discontinued because of lack of efficacy. 

The performance of study medication was rated as 

“Good,” “Very Good,” or “Excellent” in 85% of 

episodes and “Poor” in 2% of episodes. 

Of the 101 patients who responded to a preference 

questionnaire, 88% reported a pleasant taste or no 

taste associated with the films, and 94% found them 

easy to use and convenient. Of the 26 subjects who 

compared the buccal films to the buccal tablets 

(Effentora) and provided non-ambiguous responses, 

22 preferred the films and none the buccal tablets. 

And of the 27 subjects who compared the films to the 

lozenges (Actiq) and provided non-ambiguous 

responses, 23 preferred the films and none the 

lozenges. 

The safety profile was consistent with use opioids in 

cancer patients. Adverse events (AEs) attributed to 

study drug occurring with highest frequencies were 

nausea (9%), dizziness (6%), and constipation (5%). 

Only 3% of patients reported oral AE potentially 

attributable to the buccal films. 

Conclusion: Fentanyl buccal soluble films are 

effective and well tolerated in patients with 

breakthrough cancer pain. Of note is the good 

acceptability of the product by patients, and its 

excellent local tolerability. 



Massage in Cancer Patients with Pain in 

Palliative Care (Literature Review) 

Molinaro M. 1 , Ishikawa N. 1 , Fernandes P. 1 

1National Cancer Institute of Brazil, Rio de Janeiro, 

Brazil 

Pain is a frequently symptom in cancer patient and 

Massage can be a complementary therpay to relief the 

suffering and reduce the pain. The aim of this work is 

presenting a review about the benefits of massage in 

cancer patients with pain in palliative care. 

The method used was a review searching the 

following databases: Pubmed and Lilacs, and 

published in the last 10 years, and the languages 

selected for this research were: Portuguese, Italian 

English, Spanish and French. The keywords used 

were: massage, neoplasm, pain and palliative care. 

The criterias of inclusion were: original articles, 

interventionals studies, randomised or not. The 

period of ten years for researching was necessary due 

of scarcity of articles. 

Results: This strategy obtained 16 abstracts which 

were read. 6 articles were literature review, one article 

found did not mentioned patients in palliative care, 

and only 9 obeyed the criterias of selection. Different 

types of massage were found: massotherapy, 

reflexology, soft massage, aromatherapy massage. The 

Visual Analogue Scale was the most used scale for 

measuring the pain. All the articles were in English 

language. The articles about massage in patients with 

metastasis did not contra indicated the method No 

article approached children or adolescents. 

Conclusion: All the studies concluded that massage 

improved pain control, and also described others 

benefits as reductions of nausea, depression, nausea 

and anxiety. The studies showed that massage 

improves quality of life of cancer patients. This review 

was the first step to a project of research. 



Opioid Rotation from Morphine to 

Buprenorphine in Advanced Cancer Patients 

from an Inpatient Tertiary Palliative Care 

Unit Having either Poor Pain Control or 

Opiate-associated Side-effects: A Prospective, 

Non-randomized Study 

de Wolf-Linder S. 1 , Blum D. 1 , Oberholzer R. 1 , Gratwohl 

F. 1 , Buehler H. 1 , Strasser F. 1 



Aim: To assess the feasibility and safety of opioid 

rotation (OR) from morphine (MO) to buprenorphine 

(BUP) in patients from a tertiary palliatice care unit 

(PCU) with poor pain control and/or intolerable 

opioid-associated side-effects, despite state-of-the-art 

management (risk factors for poor pain control [ECS- 

CP], MO uptitration, side-effects). 

Methods: BUP was started immediately (conversion 

from MO: 1:100-20%) transdermal, sublingual or 

intravenous BUP used to titrate (up tp every 30 min). 

Pain was assessed at baseline for ECS-CP, then every 4 

hours (11-Point Numerical Rating Scale [NRS: 0=no, 

10=worst imaginable]), also symptom distress score 

(SDS: Mercadante 2005; nausea/ vomiting, 

drowsiness, confusion, constipation, dry mouth; 0 to 

3 [0 = not at all, slight, a lot and awful]). Primary 

outcome was reduction of pain scores by >33% and 

stable SDS, or stable pain and SDS reduction >33%. 

Secondary endpoints included constipation 

(#stools/day), nausea (NRS), cognitive impairment 

(short-MMSQ; Fayers 2005), opioid withdrawal 

(sweating: 4-pt NRS), symptoms (ESAS), treatments 

satisfaction (11-pt NRS), and safety. 

Results: Only 8 patients (66y, 5M/3F, various 

tumors, PPS 60) could be included, the majority of pts 

with OR in the PCU had opioids other than MO or 

combinations. MEDD was 94 (mean), 7 had risk 

factors (3 neuropathic, 6 incident, 3 

emotion/existential), HADS-A at start was 7.7, HADS- 

D 10.4; SDS 3.5 (mean), pain 5.6 (mean). 6 pts were 

responders (2 both pain & SDS [time to response 3-4 

days]; 1 pain & stable SDS [3 days]; 3 sds & stable pain 

[7 days pain, 4 hours SDS]), 2 non-responders had 

stable pain & sds (both female). 

Discussion: OR from MO to transdermal BUP in 

cancer patients referred to PCU is feasible, by offering 

for breakthrough pain both parenteral and sublingual 

BUP, and safe. A majority of referred patients to the 

PCU had another opioid than morphine or 

combinations hampering accrual. 

IIT suppported unrestricted by Grünenthal, 

Switzerland. 



Older People’s Experiences of Living with 

Chronic Pain: A Qualitative Study 

Kumar A. 1 , Allcock N. 1 

1 University of Nottingham, Sue Ryder Care Centre for 

Palliative and End of Life Studies, Nottingham, 


Background: Older people are more likely than any 

other sector of the population to experience pain and 

suffer significantly from its detrimental impact. The 

management of pain is a priority in the care of older 

people with cancer and one of the most important 

aspects of end of life care. Yet there is little published 

about the experiences and reflections of older people 

living with chronic pain. 

Aim: To learn about the experiences of living and 

coping with chronic pain from older people. 

Method: Two group interviews were convened to 

which older people with chronic pain were invited to 

share their experiences and concerns. Participants 

were contacted through self help groups via the 

Patient Liaison Committee of the British Pain Society 

and recruited on the basis they were over 60 years old 

and experiencing chronic pain. A qualitative 

approach informed by grounded theory, using semi 

structured interviews was used. The interview topics 

included: describing your pain, living with pain, 

coping with pain, treatments, and attitudes towards 

pain in older people. 

Results: Seventeen older people (14 female and 3 

male) were interviewed, with an average age of 64 

years (range 60 - 72 years). Pain impacted on 

participants’ whole life. Many adopted coping 

strategies to manage their pain but feelings of 

isolation, loneliness, distress and loss of autonomy 

were common. Concerns were expressed towards 

tolerance, dependence and unwanted side effects of 

analgesics. Some perceived that health care 

professionals had discriminatory attitudes towards 

them. 

Conclusion: The findings presented here offer a 

starting point to stimulate further debate about the 

management of pain in older people and advocate the 

support needs of older people living with chronic 

pain. Awareness of older people’s experiences of living 

and coping with pain is vital to provide practical 

references for their care and support. This study was 

funded by the British Pain Society and Help the Aged 

(now Age UK). 



Ketamine Mouthwash in the Management of 

Radiation - Induced Mucositis Pain 

Walsh J. 1 , Cooney M.C. 1 , Mainstone P. 2 , Conroy M. 3 

1 CNS Palliative Care HSE West, Limerick, Ireland, 

2 Palliative Care Consultant, Brisbane, Australia, 

3 Palliative Medicine Consultant Milford Care Centre, 

Limerick, Ireland 

Intoduction: Radiation-induced mucositis pain is a 

common toxicity for head and neck cancer patients. 

Systemic opioids are the cornerstone of treatment for 

severe mucositis pain often in combination with local 

anaesthetics, anti-inflammatories and neuropathic 

agents. 

Objectives: To describe our use of ketamine 

mouthwash in a cohort of patients with neck 

squamous cell carcinoma of head and neck and 

determine its safety and effectiveness. 

Method: A retrospective chart audit was performed 

on ten patients who received ketamine mouthwash 

for refractory mucositis pain over a 12 month period. 

All ten patients were receiving high dose radiation 

therapy (64-72Gy) for head and neck squamous cell 

carcinoma. Five patients were receiving combination 

chemoradiotherapy. 

Results: All ten (100%) patients were on regular 

mouthwashes and local anaesthetic solutions(difflam, 

benylin/maalox/lignocaine (BMX)), nine (90%) on 

opioids (morphine sulphate or oxycodone po, s/c or 

via nasogastric tube or percutaneous endoscopic 

gastrostomy). Seven (70%) were on regular 

paracetamol and four (40%) on a neuropathic agent 

(pregablin). Three patients (30%) had all four 

prescribed. Patients were commenced on ketamine 

20mgs in 10mls bioxtra mouthwash, six hourly. They 

were advised to “swish and spit”. Duration of 

treatment ranged from 13 to 36 days. The main side 

effect reported by patients was a stinging sensation 

when starting the ketamine mouthwash which 

subsided. It was deemed effective and tolerated well 

by all patients. No central nervous system adverse 

effects were reported by patients. Ketamine was 

continued for an average of 10.5 days post 

radiotherapy. 

Conclusion: Ketamine mouthwash is a useful and 

safe adjuvant treatment in the setting of radiationinduced 

mucositis pain. For the future we may trial 

starting at a lower dose of 10mgs ketamine and 

monitor its effectiveness. 



Clinical Benefit and Prognostic Factors of 

Failure to Methadone Rotation as Second Line 

Opioid in Advanced Cancer Patients: 

Preliminary Results 

Porta-Sales J. 1 , Garzón Rodriguez C. 1 , González Barboteo 

J. 1 , Serrano Bermúdez G. 1 , Vilavicencio Chávez C. 1 , López 

Romboli E. 1 , Llobera Estrany J. 1 , Tuca Rodriguez A. 1 , 

Mañas Izquierdo V. 1 , Hernández Ajenjo M. 1 , Llorens 

Torrome S. 1 , Sala Corominas R. 1 


L’Hospitalet de Llobregat, Spain 

Aim: To assess the benefit of opioid rotation (ROP) to 

Methadone (MTD) as 2on line strong opioid (OP) in 

cancer pain and to identify prognostic factors of early 


failure of MTD. To assess the benefit of ROP from 

MTD to a 3er lineOP. 

Material & methods: Prospective study in 

advanced cancer patients (pts). Pts were assessed at 

day 3,7,9,14,21 & 28 after MTDROP. Pts on MTD and 

good pain control without toxicity at day 28 will be 

considered responders (R). No R will ROP to a 3 rd OP 

and followed until day 14 th .Pain was assessed using 

BPI & toxicity using (CTCAEv3.0). 

Results: We include 56 pts(36% sample size). Mean 

age: 60 yrs-old.Men 64.3%. More frequent neoplasms 

were: digestive 27.2% & lung 25.5%. Bad prognosis 

pain features were in 96.4% pts. Previous OP before 

MTDROP was (%) fentanyl 62.5, morphine 17.9, 

Oxycodone 17.9 & Buprenorphine 1.8. Mean 

Equivalent Daily Dose Oral Morfine before ROP was 

186.6mg and Mean Equivalent Daily Dose Oral 

Methadone after ROP was 23.2 mg. Causes for ROP 

were(%): bad pain control 67.9, opioid toxicity 7.1 

and both causes concurrently 25. After ROP,% of pts 

on MTD at day 3,7,9,14,21 and 28 were 98.2, 87.5, 

80.4, 69.6, 48.2 & 35.7 respectively. Follow-up early 

losses occurred in 35.7% pts, mainly for 

administrative reasons. Nine pts failed to MTD and 6 

dropped out due other analgesic procedures. MTD Rs’ 

mean average pain improved from 5.5(day 0) to 

3.1(day 28) (p=.002), mean daily breakthrough pain 

episodes reduce from 8.6 to 1.4 (p=.001). Mean pain 

interference 6.5 vs.3.1 (p< .0001). Mean toxicity 

scores .24 vs. .26 (p=.647). About ROP to 3 rd OP, 5 pts 

did & were successful in 2. No robust predictable 

variables of MTD’s failure were identified. 

Conclusions: Although a small sample and bad 

prognosis pain sample 1/3 reached good pain control 

after 28d.This study shows a trend towards the long 

lasting benefit of MTD and the possibility to regain 

analgesia after its failure. The main limitation is the 

amount of early follow up losses. 



What Is the Key Pain Assessment Question in 

Specialist Palliative Care Units? 

Brabin E. 1 , Stirling I. 2 , Campbell S. 2 , Grant K. 2 , Sherry K. 2 , 

Laird B. 3 

1 Beatson West of Scotland Cancer Centre, Palliative 

Medicine, Glasgow, United Kingdom, 2 The Ayrshire 

Hospice, Ayr, United Kingdom, 3 Western General 

Hospital Edinburgh & Beatson West of Scotland 

Cancer Centre, Glasgow, United Kingdom 

Aims: To improve the management of pain in 

Specialist Palliative Care Units (SPCU), it is vital that 

an optimal pain assessment is done. Whilst multidimensional 

pain questionnaires, such as the Brief 

Pain Inventory (BPI), are the gold standard, such tools 

are too burdensome for routine use. It has been 

reported that “worst pain” is the most meaningful 

pain assessment question in cancer patients, but the 

validity of this in SPCU patients has not been 

examined. The aim of this study is to define the most 

meaningful pain assessment question in SPCU 


Methods: A prospective study of SPCU inpatients 

with cancer pain. All new in-patients with a cancer 

diagnosis were assessed, within 24 hours of 

admission. Pain was assessed using the BPI. An 

analysis was undertaken of the relationship between 

the components of the pain intensity scale and the 

functional interference scale. 

Results: To date 20 patients have been recruited 

however recruitment is ongoing. Preliminary results 

from 20 patients (median age 66, 70% male) show 

that median “average” pain was 5 and median 

“worst” pain was 7. BPI worst pain had the strongest 

correlation with the functional interference score of 

the BPI (r=0.503, p=0.024), followed by BPI current 

pain(r=0.497, p=0.026) and BPI average pain (r=0.393, 

p=0.09). 

Conclusion: The results indicate that ratings of 

recalled worst pain, rather than average or current 

pain, most meaningfully represent the functional 

impact of pain in SPCU patients. This is in keeping 

with previous findings from studies in oncology 

outpatients. Asking patients to recall their worst pain 

score may be a key pain assessment question in 

SPCUs. 



Efficacy and Safety of Intravenous or 

Subcutaneous Oxycodone Injection for the 

Management of Cancer Pain: An Open Trial in 

Japan 

Matoba M. 1 , Yomiya K. 2 , Takigawa C. 3 , Yoshimoto T. 4 , 

Pain & Symptom Control Research Group (SCORE-G) 

1 National Cancer Center Hospital, Palliative Medicine 

& Psycho-Oncology, Tokyo, Japan, 2 Saitama Cancer 

Center, Komuro Ina, Japan, 3 KKR Sapporo Medical 

Center, Palliative Medicine, Sapporo, Japan, 4 Chukyo 

Hospital, Palliative Medicine, Nagoya, Japan 

Aim: To investigate the efficacy and safety of 

intravenous (IV) or subcutaneous (SC) oxycodone 

injection for pain management in Japanese patients 

with cancer. 

Method: A multi-center, open-labeled, dose-titration 

study with two arms of administration route was 

conducted. 72 patients enrolled in the IV arm; 20 

patients the SC. The inclusion criteria was receiving 

scheduled potent-opioid or non-opioid analgesics 

without sufficient effect. Eligible patients were to 

receive the treatment with IV or SC oxycodone 

injection continuously for 7 days by non-randomized 

enrollment. The primary endpoint was the pain relief 

rate (PRR), i.e. the proportion of patients who 

achieved adequate pain control over a-48 hours. Pain 

control was defined as adequate when the 5 following 

criteria were all met; 

(1) unchanged dose of oxycodone, 

(2) the pain intensity under as ´ńo´´ or ´´slight´´ on 

the categoric scale, 

(3) frequency of rescue-dosing no more than twice per 

24 hr, 

(4) tolerable in all adverse events, 

(5) the unchanged dosing-regimen of analgesics or 

adjuvant analgesics. 

The frequency, severity and causality of adverse 

events were recorded throughout the study. The PRRs 

with adverse effects were compared in both arms. 

Result: 2 patients in the IV and 1 in the SC were 

excluded from efficacy evaluation: PRR was 81.4% 

(57/70) during 4.3±1.4 days in the IV arm; 73.7% 

(14/19) during 3.8±1.1 days in the SC. Nearly all of the 

adverse effects were tolerable, recovered without 

sequalae and equal to those commonly observed in 

using other potent opioids, e.g., somnolence (22.8%), 

constipation (20.7%), nausea (20.7%), and injection 

site erythema (35.0%). In the efficacy and the adverse 

events, significant differences were not found 

between each two arms. 

Conclusion: Both continuous IV and SC oxycodone 

injection provide an effective and safe analgesic effect 

for the management of cancer pain. 

This study was funded by Shionogi & Co., Ltd as the 

first trial of oxycodone injection in Japan. 



Therapeutic Value of CT-guided Percutaneous 

Cervical Cordotomy for Refractory Cancer 

Pain: A Report of Two Cases and Literature 

Review 

Matsuda Y. 1,2 , Tsuneto S. 2,3 , Okishiro N. 2,3 , Tanimukai 

H. 2,4 , Kumakura Y. 2 , Okamoto Y. 2,5 , Ohno Y. 2,6 , Inoue T. 7 , 

Nagaro T. 8 

1 Osaka University Graduate School of Medicine, 

Department of Anesthesiology & Intensive Care 

Medicine, Osaka, Japan, 2 Osaka University Hospital, 

Oncology Center, Palliative Care Team, Osaka, Japan, 


Department of Palliative Medicine, Osaka, Japan, 


Department of Psychiatry, Osaka, Japan, 5 Osaka 

University Graduate School of Pharmaceutical 

Sciences, Department of Hospital Pharmacy 

Education, Osaka, Japan, 6 Osaka University Hospital, 

Division of Nursing, Osaka, Japan, 7 Osaka University 

Graduate School of Medicine, Department of Kampo 

Medicine, Osaka, Japan, 8 Ehime University School of 

Medicine, Department of Anesthesiology & 

Resuscitology, Ehime, Japan 

Aim: Cancer patients undergoing percutaneous 

cervical cordotomy (PCC) decreased due to the risk of 

complications and advances in pharmacotherapy for 

cancer pain management. But the CT-guided PCC has 

improved the technical problems. We aimed to clarify 

the therapeutic value of CT-guided PCC in the 

management of refractory cancer pain. 

Methods: We described our experience with CTguided 

PCC in two cases of refractory cancer pain. Mr. 



A 60-year old man with malignant pleural 

mesothelioma presented with his right chest pain 

caused by vertebral body invasion and nerve root 

infiltration by the tumor. Mrs. B 70-year old woman 

with breast cancer presented with neuropathic pain 

associated with malignant brachial plexopathy in her 

right arm. They had severe pain despite systemic 

opioids, adjuvant analgesics and neuraxial opioid 

analgesia with local anesthetic. 

Results: The patients had complete relief of their 

pain in the affected side by treated with CT-guided 

PCC. Although they had mirror pain contralaterally 

after the procedure, it was transient in Mr. A. In Mrs. 

B, mirror pain persisted for long periods, but pain 

intensity was lower than that reported in the affected 

side before PCC and fentanyl and duloxetine was 

effective in treating her mirror pain. Although she 

had transient postdural puncture headache, it 

disappeared completely by epidural blood patch. 

Other adverse effects were not found. Recent 

literatures suggested that initial success rate of CTguided 

PCC were comparable to that of conventional 

fluoroscopy-guided PCC, but the complication rates 

and long-term effects appeared to be better. 

Conclusions: CT-guided PCC is one of the effective 

approaches for patients with pharmacotherapyresistant 

unilateral refractory cancer pain and may be 

safer than the conventional PCC in regard to 

complications. 



Assessing Total Pain in the Terminally Ill 

Cancer Patients in Kenyan Public Healthcare 

System 

Ali Z.V. 1 , Munyoro E.C. 2 , Gakunga R. 3 

1 Kenya Hospices and Palliative Care Association, 

Nairobi, Kenya, 2 Kenyatta National Hospital, 

Palliative Care, Nairobi, Kenya, 3 KEHPCA, Nairobi, 

Kenya 

The Kenyan healthcare system has focused mainly on 

curative approaches with little or no attention to the 

suffering of people faced with life limiting illness such 

cancer. There is need therefore to scale up palliative 

care services in order to address the suffering 

associated with cancer and improve quality of life. 

Method: 251 Patients, 236 family caregivers, 53 

Medical Caregivers, 24 Community Leaders and 8 

Spiritual Leaders participated.. The FACIT-Sp and 

ESAS tools were used for data collection. 

Findings: 35% were male and 65% were female. 

Mean age was 49 with a SD of 17. 

Female family care givers were 54% and the male were 

46%. The mean age for family care givers was 42 years 

with a SD of 11. 

Family care givers were often more educated than the 

patients. 

39% of the patients had missed medication for lack of 

money. Their mean Quality of Life was 81 and that of 

their counterparts at 89. 

Poor Wellbeing, Appetite, Pain and Fatigue were the 

most prevalent symptoms reported by the patients. 

2 Symptom Clusters emerged; Anxiety, depression, 

drowsiness and Wellbeing, Appetite, Pain and 

Fatigue. 

50% of the patients reported Severe Pain and 9% 

reported No Pain. Concerns about Opioid use included 

“addictive nature, toxicity and side effects”. Only one 

of the participating hospitals stocked morphine. 

Spiritual Pain had the highest correlation to Quality of 

Life in comparison to functional, emotional, physical 

and social wellbeing. 

90% of patients and family caregivers reported free 

communication about the illness. The data showed 

that communication or no communication with 

family on treatment options may not result in 

significant variation on quality of life of the patient. 

Recommendations: Findings may be used for 

baseline information for scaling up palliative care 

services. Service providers and policy makers can refer 

to these findings to help assess palliative care needs. 



Dying at Home: A Fact 

Rus M. 1 , Rincón C. 1 , Monleón M. 1 , Martínez Á. 1 , Fillol A. 1 , 

Catá E. 1 , Martino R. 1 

1 University Children’s Hospital Niño Jesús, Palliative 

Care Unit, Madrid, Spain 

At the present time, in most European countries, only 

a small percentage of children with incurable illness 

141 


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die at home, even if this is what most children and 

their parents would prefer. Home care requires the 

involvement of an interdisciplinary team to support 

the family through a holistic approach. It is essential 

planning and sharing strategies and objectives to 

provide the individual attention to fulfill the wishes 

of the patient and family, including the location of 

attention to death, according to physical, 

psychological, social and spiritual needs. To ensure 

continuity of care support and to choose the place of 

death, an advice by an expert pediatric palliative care 

24 hours a day, 365 days a year is needed (EAPC, 

2007). 

Objectives: To investigate the day of the week, the 

hour and the place of death of children who were 

treated by a pediatric palliative care unit. 

Design and methods: Retrospective review of 

deaths between February 2008 and October 2010. 

Results: 80 patients have died in the mentioned 

period. The average stay was 81,6 days. If we classify 

patients according to categories of the ACT/RCPCH: 

43 patients were in Group 1 (cancer), 21 in Group 3 

(neurodegenerative diseases) and 16 children 

suffering from diseases in Group 4 (cerebral palsy). 

Most of the deaths took place on working days (64%) 

although 68% of treated patients died after hours 

(3:00 p.m. to 8:00 a.m.). The locations of death for 

children were: Home 57 (71%) and Hospital 23 (29%). 

The reasons why the children died in the hospital 

were medical complications, family overload or 

autopsy. 

Conclusion: An advanced and individual care 

planning has allowed us to explore, before the child´s 

death, the viability of that happening at home and to 

provide resources where required. To be able to offer 

in home palliative care until death a 24-hours a day 

access to pediatric palliative care expertise is a 

fundamental resource. But die at home is not always 

feasible for specific reasons. 



Systematic Evaluation of Quality of Life and 

Symptoms in Advanced Cancer Patients 

between 2 and 18 Years of Age 

Sassi Presti M.S. 1 , Germ R. 1 

1 Hospital Nacional de Pediatria Juan P Garrahan, 

Palliative Care Unit, Buenos Aires, Argentina 

Objective: To assess quality of life (QL) and 

symptoms in advanced cancer patients between 2-18 

yrsTo explore the correlation between QL and 

symptoms reported by patients and parents. 

Method: Prospective, descriptive and longitudinal 

work May 2009-June 2010 Included male and female, 

in & outpatients. Excluded agonic patientsQL was 

assessed using Pediatric Quality of Life (PedsQL4) 0- 

100 scale Memorial Symptoms Assessment Scale 

(MSAS) Likert-type which assesses frequency, 

intensity and distress of physical and psychological 

symptoms. Both instruments were given monthly to 

parents and children separately according to 

ageStatistical software SPSS. 

Results: N 48 Age: median 125 months (26-216)48% 

CNS, 22% solid, 15% bone tumors15% leukemia and 

lymphoma42% died, 31% were counter referred, 23% 

are followed up, 4% left study. Follow-up median 34 

days (1-300)Score PedsQL4 patients between 5-18 yrs 

(N 26)Median, IQR Total 72 (42-82) Physical 59 (44- 

81) Psychosocial 65 (52-83)Score PedsQL4 parents (n 

45)Median, IQR Total 56 (46-71) Physical 47 (25-59) 

Psychosocial 60 (55-68)Score MSAS between 13-18 yrs 

(n 16)Median, IQR Total 0.35 (0.19-0.69) Physical 

0.49 (0.18-0.42) Psychological 0.33 (0-1.1)Global 

Distress Index (GDI) 0.44 (0-1)Score MSAS parents (n 

45)Median, IQR Total 0.66 (0.46-1.12) Physical 0.78 

(0.25-1.2) Psychological 1.05 (0.66-1.83)GDI 1.11 

(0.88-2.22). 

Conclusion: Parents reported worse overall QL than 

their children but the physical area was the worst for 

bothThere was a negative correlation between general 

QL and general score of MSAS in patients between 13- 

18 yrs (RHO -,49) and their parents (RHO -,56) 

p=0.03Physical symptoms score was the most affected 

in adolescents while in their parents was GDI. The 

most prevalent symptoms were not always the most 

distressingSymptom prevalence was the same as the 

international literatureParents perceived more 

psychological symptoms & distress than their 

children maybe because patients find difficulties in 

expressing emotions. 



Access to and Experience of Paediatric 

Palliative Care Services by Black and Minority 

Ethnic Groups 

Hemsley J. 1 

1 Great Ormond Street Hospital, Oncology Outreach 

and Palliative Care, London, United Kingdom 

Overall aim of paper Literature review to critically 

analyse the access to and experience of paediatric 

palliative care services by black and minority ethnic 

groups. 

Growing concern in the UK regarding the use of 

palliative care services by black and minority ethnic 

groups (BME) has been the focus of numerous 

research studies within the adult population (NICE 

2004). The Department of Health (2007a) and 

ACT/RCPCH (2003) recognize that BME groups may 

find it hard to access paediatric palliative care and 

related services for cultural and language reasons. The 

Association of Children’s Hospices (2004) highlights a 

commitment to working with families from all faiths, 

cultures and ethnic backgrounds, yet there is scant 

research relating to such groups in the paediatric 

population. 

Due to the lack of research literature on this subject, 

the presentation examines two data sets that focus on 

the following: 

Access to and experience of paediatric palliative care 

services by children and their families 

Access to and experience of palliative care services by 

adults and carers from BME groups 

Whilst recognising that palliative care for children 

differs from adult palliative care the presentation will 

critically explore similarities or differences that may 

exist between these groups, in a bid to extrapolate 

how BME groups access and experience paediatric 

palliative care, and explore the implications for 

nursing practice. 

The main themes include 

Patients and carers’ perspectives of paediatric 

palliative care services. 

Professionals´ perspectives of the needs of black and 

minority ethnic groups may facilitate or impede 

access to paediatric palliative care services 

Communication and information influence the 

uptake of paediatric palliative care services 

Ultimately, the literature review revealed an urgent 

need for research to explore how children and 

families from BME groups’ access and experience 

paediatric palliative care. 



Pilot Study on Cancer Treatment Accessibilty 

in Cameroon 

Menang J.N. 1 , Ngwa E. 2 

1 Cameroon Laboratory & Medicine Foundation 

Health Centre, Nursing, Yaoundé, Cameroon, 

2 DIPROLOC Clinic, Administration/Research, Buea, 

Cameroon 

Background: Characteristics of under development 

especially poverty has greatly handicapped the 

Millennium Development Goals (MDG) that targeted 

the neonatal, infant and child mortality. There are 

still very serious problems of accessing drugs for 

chronic illnesses like cancer especially in children. 

Opiods/ chemotherapeutic agents; diagnostic, 

treatment /care centres are still very rare in 

Cameroon. Cameroon lies on West Africa, described 

on the MDG goal as the region with the worst world 

children and infant mortality rate. 

Method: Touring the health units, survey 

questionnaires, national population statistics analysis. 

Results: Up to about 55% of Cameroonians live in 

poverty; therefore deprived of health amenities and 

providing any form of palliative care to chronic 

diseases like cancer, HIV/AIDS is very rare thing to 

come by in health institutions. Palliative services and 

approach like modern approach of multidisciplinary 

approach, psychosocial needs besides treatment are 

rare in many modern institutions. 40.2% of 16 

million (Cameroon population) live below the 

poverty line of one US dollar per day of which 52.1 

percent are in rural areas. 

Conclusion: Most hospitals are expensive, 

characterized by bribery and corruption and few 

available modern institutions are located but in the 

capital cities with very expensive costs; yet with few 

professionals. There is neither any national oncology 

nor palliative care society to take charge. Affording for 

opiods or chemotherapeutic agents is scarce. This has 

caused the masses to stick to unsafe traditional 

practices and care. This portrays the great challenges, 

the tasks awaiting professionals and the great need for 

partnership, funding and research. 



Challenges in the Use of Paediatric Central 

Venous Access Devices in the Community 

Wallace E.M. 1 , O’Reilly M. 1 , Twomey M. 1 

1 Our Lady’s Hospital for Sick Children, Palliative 

Medicine, Dublin, Ireland 

Background: Central venous access devices (CVADs) 

play an essential role in the care of critically ill children 

by facilitating the administration of medication, 

nutrition and blood products. This role continues at 

the end-of-life (EOL) where comfort is the priority and 

use of IV medication prevents the use of other more 

painful routes. Challenges exist in the community for 

teams providing EOL care in managing CVADs. We 

aimed to assess the experience of general practitioners 

(GPs) caring for children with CVADs in order to 

identify potential barriers to their use. 

Methods: Two hundred CVADs were inserted in 2009 

in a tertiary referral hospital. Fifty were randomly 

selected and 44 GPs were forwarded a questionnaire. 

Results: Twenty GPs (46%) responded. CVADs were 

used for a variety of indications including medication 

administration, nutrition and blood sampling. Only 

two children had a syringe driver attached to their 

CVAD at EOL. Thirteen GPs (65% of those who 

responded) had no education in management of the 

CVAD. Fourteen GPs (70%) were unaware of 

guidelines supporting their use. There was a lack of 

clarity over responsibility for the CVAD in the 

community.Challenges identified included lack of 

education, line management difficulties, infection 

risk and poor communication. GPs made a number of 

proposals to overcome these challenges. 

Conclusion: Continued use of CVADs at EOL is 

desirable from the patient and family point of view 

yet there are considerable challenges. A lack of formal 

education and support exists for GPs. Education and 

training in the use of CVADs is necessary to support 

GPs involved in providing EOL care for children in 

the community. 



Providing Family Choice in Place of 

Extubation when Death Is a Likely Outcome 

Craig F. 1 , Hemsley J. 1 , Laddie J. 1 , Brierley J. 2 

1 Great Ormond Street Hospital, Palliative Care, 

London, United Kingdom, 2 Great Ormond Street 

Hospital, PICU, London, United Kingdom 

Providing choice in place of care at the time of death is 

one of the key goals of a palliative care service. The 

Palliative Care and Intensive Care services at a tertiary 

paediatric hospital have worked closely to develop an 

out-of-hospital extubation program for children. This is 

offered to all families where continuation of ventilation 

is no longer appropriate and death is a likely outcome. 

Since the program was established, 8 families have 

chosen to transfer their child out of the hospital prior 

to withdrawal of invasive ventilation (n=7) or CPAP 

(n=1). 

Of the 8 children transferred out, 5 families chose to 

go home, 2 went to a children´s hospice (neither of 

whom had used the hospice previously) and 1 

returned to a residential care home. The children 

ranged in age from 6 weeks to 16years. 

This presentation will address: 

Development of a joint palliative and intensive care 

program 

The process of transfer and extubation 

Symptom management following extubation 

Provision of home care 



Symptoms in Advanced Phase of Childhood 

Cancer: Evaluation and Approach 

Birtar D.M. 1 , Corbu A. 1 , Luca D. 1 

1Hospice ‘Casa Sperantei’, Paediatric Dep, Brasov, 

Romania 

Aim: To evaluate the quality of symptom control in 

children with advanced cancer by: 


1. Assessing the incidence of symptoms 

2. Noting the existence of individualised care plans for 

each symptom 

3. Assesing parents perception on the contribution of 

palliative care to the symptom control and quality of 

life 

Method: Review of medical records of all children 

who died of cancer between 1996 and 2008 in the care 

of our hospice and interviews with parents after of the 

child´s death. Children included in the study had at 

least one complete evaluation of symptoms. Data 

were analysed using SPSS 13.0. 

Results: Out of 94 children who died in our care 51 

had cancer. 80% of children died at home. 

39 symptoms were identified. The data confirm a high 

prevalence of symptoms overall .The most common 

symptoms were pain (100%), lack of appetite (87%), 

asthenia (87%), constipation (72.9%), nausea (70.8%), 

dyspnoea (60%), cough(60%), irritability (66.7%) and 

anxiety (60%). Pain was controlled in 60% of our 

patients, better than dyspnoea (10%) and nausea 

(50%). Anorexia, fatigue and irritability were frequently 

rated in our survey, distressing the parents a lot. We 

found that not the same attention was given to the 

management of psycho emotional problems compared 

to the physical symptoms.Better symptom control was 

achieved in those referred earlier to palliative care. 

The parents’ survey showed that the palliative care 

team intervention had a major contribution towards 

symptom control and improvement in quality of life 

in children with advanced cancer. Parents appreciated 

that the child was able to be cared for at home most of 

the time. 

Conclusions: All children experienced substantial 

suffering in the last period of life. Pain was better 

controlled than dyspnoea and nausea.The palliative 

care interventions made it possible for the majority of 

children to die at home and contributed a lot to the 

improvement in quality of life for the children and 

their families. 



Systematic Assessment of Symptoms in 

Children with Chronic Obstructive 

Pulmonary Disease 

Sassi Presti M.S. 1 , Germ R. 1 



Introduction: Chronic Obstructive Pulmonary 

Disease (COPD) is a progressive condition that is 

characterized by the chronic and little reversible 

obstruction of the airways. In our country this 

condition appears as a pulmonary after-effect caused 

by acute lower respiratory tract infections due to 

Adenoviruses and Influenza. It is a very serious 

problem because of its high morbidity, its low life 

quality and the absence of curative treatment. In 

children the research on symptom prevalence and 

patient needs with COPD is scarce. The objective was 

to determine symptom prevalence in these patients 

and implement an early treatment. 

Method: Descriptive, prospective, transversal study 

of patients with COPD in Pneumology Department 

during 2007. From a total of 131 patients, 39 met 

severity criteria (hypoxemia at rest, continuous 

oxygen therapy, hypercapnia, pulmonary 

hypertension and weight loss). Memorial Symptoms 

Assessment Scale was applied, according to patient 

age and health care proxy was given to the family. 

This scale assesses physical and psychological 

symptoms according to intensity, frequency and 

distress. 

Results: N 39 Female 29% Male 71 %Physical 

symptoms: Cough 90%, Loss of Appetite 80% 

Drowsiness 80% Energy Loss 70%, Nausea 60%, 

Shortness of Breath 50% Headache 50% Pain 

30%Psychological symptoms: Difficulty sleeping 

85%, Body Image Distortion 70%, Sadness 65%, 

Worry 60%, Difficulty Focusing 55% 

Conclusions: We remark the number and diversity 

of detected symptoms. 50% of patients presented 9 or 

more symptoms. It was relevant that the patients 

showed a lot of psychological symptoms. The impact 

of these symptoms in chronic patients calls for 

interdisciplinary strategies Physical symptoms were 

early controlled with opioids which proves their 

benefits in this populationThe Memorial Symptoms 

Assessment Scale is useful for the evaluation in 

diseases other than cancer. 



Palliative Care in a South American 

Children´s Hospital: A History of Fourteen 

Years of Work 

Lascar E. 1 

1 Children´s Hospital Ricardo Gutierrez, Pediatric 

Palliative Care, Buenos Aires, Argentina 

To communicate the experience of the development 

of a working team of palliative care (PC) in a 

children’s hospital during 1996 to 2010. 

Method: Descriptive, activities presentation, care 

modality and team’s evolution. 

Background: PC was initially delivered within the 

Oncology Unit (1990). Wishing to cater for the 

growing demands from patients with other 

pathologies, the PC Unit was created in 1996. 

Hospital (founded in 1875) is a leading tertiary care 

pediatric institution that deals with patient referrals 

both locally and from neighboring countries. 

Results: The team’s evolution changed over time. 

Now it is composed of four pediatricians, four 

volunteers, one pharmacist, one occupational 

therapist, one anthropologist and one psychological 

supervisor. 

1996 2009 growth 

first time patients 52 184 354% 

number of consultations 418 2555 611% 

oncological disease 50% 32% 

median age 9 ys 7 ys 

reason for consultation: 1)pain 85% 55% 

2)palliative care 3) other 28% 19% 20% 25% 

Nº of hospitalized patients 351 2002 

non pharmacological (y.2001) 0 15% 

techniques (NPT) 

Nº patients receiving NPT (y.2001) 0 378 

[Care activities] 

Education program: Implemented from the 

beginning for hospital staff, residents, nurses, 

pharmacists, and also health care personnel from 

other public and private centers. 

Research: A few small clinical research projects in 

the initial phase, mostly descriptive. 

Conclusions: Work was sustained in order to 

prioritize care of patient’s needs over budget 

constraints. 

Consistent increase in the number of consults and 

first-time patients. 

Decreased relationship of oncological-non 

oncological disease. 

Slight increase in outpatient’s consultations. 

Increased queries regarding symptoms other than 


Increased opioids consumption. 

The main resouce is the team. 

Interdisciplinary team´s work makes it easier and 

improves quality of care. 



Nurse´s Difficulties in End-of-Life Care for 

Adolescent Patients 

Fujisawa Y. 1 , Nozaki-Taguchi N. 2 

1 Chiba University Hospital, Nursing Department, 

Chiba, Japan, 2 Chiba University Hospital, 

Department of Anesthesiology, Chiba, Japan 

Background: Nurses face difficulties when they care 

for adolescent patients with life-threatening illness, 

because adolescent have characteristics which differ 

from children or adults. For patient care 

improvement, it would be useful to investigate the 

nurse’s difficulties and support needs. 

Aim: To identify difficulties and support needs of 

nurses who face end-of-life care for adolescent 

patients. 

Method: The subject of this study was nurses who 

experienced care for adolescent patients, as a primary 

nurse, who died in an acute hospital from February 

2006 to September 2010. Adolescent patient was 

defined, in this study, as ages between 16 and 29. 

The study data was collected by semi-structured 

interviews and analyzed qualitatively. Questions were 

difficulties experienced in end-of-life care for 

adolescent patients, useful supports from a palliative 

care team (if they had received) and further support 

needs. 

Results: Seven nurses were interviewed. 

Nurses experienced the following difficulties: drawing 

out patient’s true desire who doesn’t speak out one’s 

mind, supporting in notification of patient’s severe 



condition to the patients and his/her family 

members, adjusting differences of opinion between 

parents, finding support for their siblings, and getting 

assistance from other stuff member. 

Useful support received from a palliative care team 

were, the assurance of their care from an expert 

aspect, offer of special knowledge, skill, and objective 

assessment. 

Following supports were considered necessary: place 

where young patients can talk with their own 

generation, support resources for family members, 

and further objective assessment for nurse’s care. 

Conclusion: Nurses face specific difficulties in care 

for adolescents. To assist nurses and improve patients 

care, palliative care team should have a detailed 

communication with the nurses and assure their care 

with objective assessment and positive feedback with 

advice of skilled care. 



Homeopathic Treatment for Restlessness and 

Anxiety in Pediatric Palliative Care 

Grasser M. 1 , Kruse S. 2 , Borasio G.D. 3 , Führer M. 1 

1 Dr. von Haunersches Kinderspital and 

Interdisciplinary Center for Palliative Care, University 

Clinics of Munich, Coordination Center for Pediatric 

Palliative Care, Munich, Germany, 2 Dr. von 

Haunersches Kinderspital, University Clinics of 

Munich, homeopathy, Munich, Germany, 



Introduction: The pediatric palliative care team in 

Munich took care of over 200 children and teenagers 

with life-threatening diseases in the last 6 years. To 

evaluate the usefulness of classical homeopathic 

therapy on restlessness, anxiety and quality of life we 

started a prospective observational trial with add-on 

homeopathic treatment. 

Methods: Classical homeopathic anamnesis is 

performed for each patient (mean duration 2.5 

hours). The correct homeopathic remedy is 

determined with the help of Synthesis ® 7.0, a 

homeopathic repertory, and a specialized software 

program, Radar ® , under the supervision of a specialist 

in homeopathic medicine. 

The caregivers receive three questionnaires before 

start of the homeopathic treatment, as well as 6 weeks 

and 3 months later: the HPS (scale for home-care), the 

SL12 (health of the caregivers) and a self-developed 

questionnaire about the symptom burden and quality 

of life (QOL) of children and caregivers. The children 

perform the KINDL (age-bound questionnaire on 

QOL for children with chronic disease) and a childorientated 

questionnaire about their disease burden. 

Results: So far, 5 patients have been included (mean 

age 8.8 yrs, 3 females). One patient died before the 

completion of the study, one patient is still ongoing. 

One girl could answer the questionnaires herself: her 

quality of life improved from 1 to 6 (scale 0-10) under 

homeopathic therapy; her restlessness was reduced 

from 8 to 0, and her sleeplessness was gone. 

The caregivers (n=3) also saw a reduction in 

restlessness (mean 7.6 to 3.3) and in anxiety (mean 

5.6 to 3.6) in the patients, as well as a small 

improvement in quality of life (mean 3.6 to 4.3). Their 

own QOL and health did not improve during the 

study. 

Conclusion: The data are too preliminary to allow 

any conclusion on the effect of add-on homeopathic 

treatment for children in palliative care. The study is 

still ongoing, and updated results will be reported. 



The ICPCN Declaration of Cape Town - Putting 

Actions to the Words 

Boucher S.J. 1 


Hillcrest, South Africa 

Aims: Understanding the inspiration behind the 

writing of the ICPCN Declaration of Cape Town. 

Learning of the benefits of networking on an 

international scale. 

Highlighting the achievements of the ICPCN to date 

to advocate for the development of palliative care 

services for children around the globe. 

The 2009 CHI 20th World Congress, held in Cape 

Town, provided a rare opportunity for delegates from 

Africa to attend a congress of this nature. Twenty-one 

nations were represented and over the three days of 

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the congress, the disparities between access and 

availability of resources in developed and developing 

countries became increasingly obvious. 

ICPCN Steering Group members prepared a statement 

calling for a commitment to mutually beneficial 

sharing and collaboration between organisations 

within developed and developing countries resulting 

in “The ICPCN Declaration of Cape Town”. 

This Declaration calls on the international children´s 

palliative care community to recognize that 

disparities exist within and between countries and 

services but states that “collectively we are a rich 

resource of knowledge, skill and judgement and we 

commit to share all that we can to achieve this joint 

vision.” 

The Declaration has since been signed by hundreds of 

people working in the field of children´s palliative 

care. However, without a plan of action to turn the 

words of the declaration into action, it has little 

meaning. 

This presentation will explore how the ICPCN has 

used this declaration as an advocacy tool to further 

the global reach of good children’s palliative care 

while calling on its members to honour their 

commitment to completing the circle of care through 

sharing and collaboration. 



Cancer Paediatric Palliative Care in Russia: A 

New Step Forward 

Vvedenskaya E. 1 , Sokolova E. 1 

1 State Medical University, Nizhny Novgorod, Russian 

Federation 

Background: Annually 4.5 thousand new cancer 

cases are registered in children and adolescents in 

Russia. The aim of the study was to take the first 

attempt to describe palliative care for children with 

cancer in Russia and perspectives for its development. 

Methods: We adopt a multimethod approach, which 

involves the synthesis of evidence from published 

literature, the Internet resources, local experts 

interviews and personal communication. Data have 

been gathered from the following sources: 

(1) published articles in peer reviewed and 

professional journals, 

(2) books and monographs, 

(3) palliative care directories, 

(4) palliative care web sites, 

(5) grey literature and conference presentations, and 

(6) the opinions of experts. 

Results: We found cancer hospice care services in 5 

cities within the country. They are represented by 

small hospices; home teams or wards in adults’ 

hospices. Generally palliative care is provided by 

specialists in diverse paediatric clinical settings. 

Currently 2 inpatient hospices for children are under 

development. There are a lot of NGOs and public 

initiatives that support medical care for and social 

well-being of children with cancer all over the 

country. In 2003, Dr. Arkagi F. Boukhny and Dr. 

Marina A. Bialik in the U.S. launched a project entitled 

Pediatric Palliative Care Initiative for Russia. The 

powerful palliative care advocacy initiative “The 

Angel’s House” was launched in Moscow with the aim 

to push forward paediatric palliative care 

development in the country. 

Conclusion: There is evidence of wide-ranging 

initiatives designed to create the organizational, 

workforce, and policy capacity for hospice-palliative 

care services for children. Activities include: 

attendance at, or organization of, key conferences; 

lobbying of policy-makers and health ministries; and 

an incipient service development, usually building on 

existing home care programs. New hospices and 

palliative care services are scheduled to start in 9 

regions. 



The Dialogic Life-death in Care Provided to 

Adolescents with Cancer 

Menossi M.J. 1 , Zorzo J.C.D.C. 1 , Lima R.A.G. 2 

1 Hospital das Clínicas da Faculdade de Medicina de 

Ribeirão Preto - Universidade de São Paulo, Pediatria, 

Ribeirão Preto, Brazil, 2 Escola de Enfermagem de 

Ribeirão Preto - Universidade de São Paulo, 

Enfermagem Materno Infantil e Saúde Pública, 

Ribeirão Preto, Brazil 

Objective: To understand the configuration of 

palliative care in the context of care delivered to 

adolescents with cancer and identify elements that 

take into consideration the complexity of the human 

condition. 

Method: This qualitative study was based on Edgar 

Morin’s concept of complexity. A total of 12 

adolescents, 14 family members and 25 health 

professionals participated in the study. Interview and 

observation were used to collect data. The discussion 

related to empirical data was guided by the dialogic 

life-death in the context of care provided to 

adolescents with cancer. 

Results: Disease disrupts daily activities and at the 

same time enable individuals to look at themselves 

and to death that becomes increasingly present. The 

experience of adolescents reveals they start to 

experiment time with urgency and confront death 

more intensely. The singular way in which adolescents 

experience time and face death may not be in tune 

with care provided by the health team, considering 

structural, organizational and affective aspects. 

Conclusion: It is in this context in which the 

dialogic life-death, evident in the human condition, 

emerges. Reflecting on the ways care is construct leads 

to the conception of palliative care. We share the 

conception proposed by the World Health 

Organization that does not restrict palliative care to a 

particular phase of the disease, rather it incorporates it 

into care that permanently connects the healing and 

palliative dimensions of care, involving the work of a 

team that accompany all the moments of diagnosis 

and treatment, establishing meaningful ties, from 

diagnosis to cure or to death, when the latter is 

inevitable. The current challenge is to find concrete 

conditions that implement this conception into daily 

practice. It implies in concomitantly considering 

aspects related to individual and collective goals, to 

the institutional context and to the health system. 



The ICPCN Is Reaching out to the World: Is 

Palliative Care for Children Reaching an 

International Tipping Point? 

Boucher S.J. 1 


Hillcrest, South Africa 

Aims: 

• To inform delegates of the work of the ICPCN 

• To encourage further networking and partnerships 

between children’s hospice and palliative care services 

Previously there was limited awareness of the status of 

palliative care for children internationally and what 

services there were tended to be isolated and 

unconnected. With seed funding from The True 

Colours Trust, the ICPCN was begun, and set out to 

tug on all the international threads to find what 

services for children there were at the end of them. 

Through focused advocacy and networking, the 

ICPCN has been able to build a clearer picture of the 

provision of palliative care for children worldwide as 

well as what training and education is available in the 

field. The ICPCN has become a trusted conduit for 

information, a central networking point and, through 

its Steering Group, newly formed Research 

Committee and its growing membership, a deep 

reservoir of knowledge and experience upon which 

the rest of the world is free to draw. 

In 2009 the ICPCN Cape Town Declaration stated that 

palliative care for children is a human right and 

signatories were asked to commit to sharing their 

knowledge and expertise in order to further grow the 

movement internationally. Through the development 

of a Guide to Children’s Hospice & Palliative Care 

Partnerships the ICPCN hopes to encourage member 

hospices to reach out to one another in the spirit of the 

declaration and bring the provision of palliative care 

for children closer to the tipping point. 

ICPCN’s informal mapping of palliative care services 

shows, that while there is still much work to be done, 

the need for children’s palliative care is becoming 

recognised as a reality worldwide and it is vital that we 

seize every opportunity we can to advocate for its 

inclusion in the healthcare policies of every country. 

It is only by reaching out to help and support one 

another that we will finally reach and move beyond 

the tipping point. 



Interdisciplinary Approach for Children with 

Osteogenesis Imperfecta from a Reference 

Hospital - Why Are We Part of this Team? 

Garcia H.O. 1 , Germ R. 1 



Introduction: The Osteogenesis Imperfecta (OI) is a 

genetic hereditary disease expressed by the fragility of 

bones. There are different types of OI with a broad 

variability in its severity. These patients have frequent 

fractures, osteopenia, and undergo alignment surgeries 

with basal pain and incidental pain episodes. The team 

that treats children with this conditon is composed by 

Growth and Development, Genetics, Orthopedics, 

Chiropractics and Palliative Care Services. A member of 

Palliative Care Unit (PCU) assesses and treats the pain 

and also teaches the parents how to treat the pain when 

spontaneous fractures occur. Some printed material is 

handed out on the use of analgesics in Pediatrics. 

Method: The interdisciplinary team has treated 216 

patients with OI since 2001. Thirty percent of these 

patients (N 66), who presented the most serious 

expressions of the disease and also needed the largest 

number of consultations, were assessed during 2007- 

2008. Interviews with parents and patients an pain 

assessment with scales according to age were 

performed. 

Results: Mean age: 8.43 years. Interdisciplinary 

follow-up average: 4.75 years. Contact with Palliative 

Care N 38 (57.6%). Follow-up N 19 (28.8%) Parents 

training: N 35 (53%). Pain during last month: N 9 

(13%) Intensity: 3-7/10 Current Pain Treatment: N 8 

(12.1%) 

Conclusions: The presence of pain and its treatment 

was higher in the most severe cases. Only 8 patients 

(12%) received analgesic treatment at the moment of 

the study. The treatment of pain allows a better 

acceptance and adaptation to the kinesthetic 

rehabilitation of these patients. The most important 

things in taking part of PCU are symptom control in 

this chronic pathology with multiple pain causes and 

also the training of the parents to treat the acute pain 

episodes. 



Palliative Care in Pediatric Oncology: 

Considerations on the State of the Art 

Lima R.G. 1 , Matos N. 1 , Nascimento L.C. 2 , Research Group 

in Nursing Care Child and Adolescent Health 


Health Nursing, Ribeirão Preto, Brazil, 2 University of 

São Paulo, Ribeirão Preto, Brazil 

Palliative care is among health care systems’ priorities. 

This study reviewed scientific publications addressing 

palliative care delivered to children with cancer. This 

bibliographic study collected data from the LILACS 

and MEDLINE databases between 1999 and 2010. The 

descriptors Hospice Care, Child and Neoplasms were 

used in English, Portuguese and Spanish. A total of 51 

studies were identified, of which 15 were selected 

according to inclusion criteria. The studies were fully 

analyzed in order to identify the central theme and the 

following indicators: source and year of publication, 

descriptors, methodological approach and final 

considerations. The results revealed 9 studies in the 

MEDLINE database and 6 in the LILACS. There were: 1 

article in each year from 1999 to 2002; 2 articles in 

2003; 1 in 2004; 3 in 2005 and 3 in 2007 and 1 in 2009 

and in 2010. In relation to the source and number of 

articles, 6 periodicals were from the United States of 

America; 3 from Brazil; 3 from Chile and Australia, 

Denmark and England had 1 periodical each. The 

following methodological approaches were used: 8 

were original studies with a predominance of 

qualitative studies; 4 reviews; 2 case studies and 1 

experience report. The main themes were: 

organization of palliative services; palliative care to the 

child with cancer and the participation of the team in 

the care to children with cancer. A common element 

among the articles was a reflection about the 

importance of including palliative care in the care to 

children with cancer, stressing its benefits; 

presentation of definitions, care strategies and training 

the team to palliative care; the need to structure 

palliative services and programs and analysis of 

palliative care as essential to improve quality of life in 

the death and dying process. There is a lack of studies 

assessing the needs of terminally ill children and those 

of their families and also the inclusion of palliative care 

since the diagnosis of pediatric cancer. 




Is Advance Care Planning (ACP) Acceptable 

and Feasible for People with Dementia? A 

Systematic Review of the Literature 

Harrison Dening K. 1 , Jones L. 2 , King M. 3 , Sampson E. 3 

1 UCL & Dementia UK, Mental Health Sciences, 

London, United Kingdom, 2 UCL Medical School, 

Marie Curie Palliative Care Research Unit, London, 

United Kingdom, 3 UCL Medical School, Mental 

Health Sciences, London, United Kingdom 

Aims: People with dementia have limited access to 

good quality palliative care. Advance care plans (ACP) 

may improve this. We aimed to review systematically 

the range of literature on ACP in dementia, including: 

issues for people with dementia, their carers or health 

care proxies and healthcare professionals; to assess the 

literature quality and highlight gaps in evidence. 

Methods: A systematic review with a broad search 

strategy refined on PubMed and translated for 

CINAHL, BNI, PsychINFO, EMBASE , AMED , 

Cochrane Library, SIGLE and CPI (searched to March 

2009). Abstracts were appraised by two researchers. 

Included articles were in English, any methodology, 

focused on people with dementia/carers, 

characteristics of study populations, settings and the 

type of ACP investigated. Articles were hand-searched 

for secondary references. Study quality was assessed 

using the SCIE Systematic Research Review framework 

and standard guidelines for quantitative studies. 

Results: Searches yielded 303 papers, 17 were 

included (one qualitative, 11 quantitative and 5 

mixed methods). Most were conducted in USA. 

Sample sizes varied greatly (n=6-745). Given the 

methodological heterogeneity of studies, data were 

not pooled for further analysis. We identified 5 

themes: cognitive impairment and mental capacity (a 

MMSE range of 18-20 is required to undertake ACP, 

below this carers became more involved); Decisions 

about life- sustaining treatment (burdened carers are 

more likely to opt for such treatments); comparisons 

with ACP in other groups (people with dementia were 

more impulsive in their decisions); family and 

professional carer attitudes (family carers attach more 

importance to ACPs and professionals are reluctant to 

discuss ACP); and a need for more education on how 

to initiate ACP discussions. 

Conclusions: The evidence on ACP in dementia is 

limited. UK government policy suggests everyone 

should engage in ACP. More evidence is needed on 

feasibility and acceptability in dementia. 



PRISMA WP6 Expert Meeting on Palliative 

Care in Long-term Care Facilities 

Albers G. 1 , Pasman H.R.W. 1 , Onwuteaka-Philipsen B.D. 1 , 

Ribbe M.W. 2 , Froggatt K. 3 , Deliens L. 1 , on behalf of 

PRISMA 

1 VU Universtity Medical Center, EMGO Institute for 

Health and Care Research, Department of Public and 

Occupational Health, Amsterdam, Netherlands, 2 VU 

Universtity Medical Center, EMGO Institute for 

Health and Care Research, Department of Nursing 

Home Medicine, Amsterdam, Netherlands, 3 Lancaster 

University, International Observatory on End of Life 

Care, School of Health and Medicine, Lancaster, 


Background: Due to the rapid ageing of the 

European population there is an increasing role of 

long-term care (LTC) facilities in palliative care for 

frail older people. More research needs to focus on 

palliative care in long-term care facilities in Europe. 

Work package (WP) 6 of project PRISMA, (Project 

Title: Reflecting the Positive diveRsities of European 

prIorities for reSearch and Measurement in EoL cAre) 

funded by the European Commission’s Seventh 

Framework Programme, is focusing on research in this 

area. 

Aim: One of the main aims of PRISMA WP6 was to 

promote and facilitate a European collaborative on 

palliative care research in long-term care facilities and 

to prioritise and develop a future research agenda. 

Methods: We organised an expert meeting on 

palliative care in long-term care facilities in 

collaboration with the ‘EAPC Taskforce - Palliative 

Care in Long-Term Care Settings for Older People’. 

Thirty public health researchers, physicians, nurses 

and ethicists from 10 different European countries 

participated in this meeting. During this meeting 

experience in research on palliative care in long-term 

care settings was shared, topics for future research 

were prioritised and research questions were 

developed. 

Results: The following topics have been identified as 

foci for future research: advance care planning, 

dignity, communication and decision-making, 

development of a validated instrument to assess pain 

and symptoms, development of quality indicators 

and an organizational model of service delivery for 

palliative care in long-term care settings. Initiatives for 

European collaboration were set and agreements on 

developing new research proposals to elaborate the 

abovementioned topics were made. 



Dying with Dementia in a Mental Health Unit 

Dixon R.E. 1 , Hardman-Smith J. 2 , Cooke C. 1 

1 LOROS, Leicester, United Kingdom, 2 University 

Hospitals Leicester, Palliative Care Team, Leicester, 


Background: More patients are dying with 

dementia, many in long-term care settings. In 

recognition of this, the National Dementia Strategy, 

launched in 2009, included a focus on end of life care. 

With numbers expected to rise dramatically, it is 

important to assess and develop services accordingly. 

Method: A retrospective audit was carried out from 

March 2008 to November 2009 on referrals from an 

80 bed specialist psychiatric unit for older people to 

the Specialist Palliative Care Team. It focused on the 

reason for referral, analgesic requirements and 

whether end of life could be predicted. 

Results: There were 26 referrals, all of whom had 

dementia. Seven had a coexisting malignancy. Most 

referrals were for pain, not eating or drinking, poor 

drug compliance and a general review of symptoms. 

At first assessment, 50% of patients were on no 

analgesia or on paracetamol. The rest were on codeine 

or low dose opiates. It was felt there was an element of 

pain in 20 patients, that was controlled with low dose 

analgesia. The most common causes of pain were 

stiffness due to arthritis, contractures and pressure 

sores. Where an opiate was required, buprenorphine 

or fentanyl patches were the drug of choice as many 

patients were unable to take oral medication and 

syringe drivers were not used on the unit. Based on 

Liverpool Care Pathway (LCP) criteria, death was 

predictable. Had the LCP been implemented on the 

unit, the palliative care team would have initiated it 

for 13 of the 14 patients who died. Although not 

measured, it was felt that many visits were for staff 

support and that staff lacked confidence in symptom 

control and recognition of impending death. 

Conclusion: The results of this audit and current 

evidence suggest that patients with dementia do not 

tend to have complex symptom needs and death is 

predictable. Staff recognise symptoms well but lack 

confidence in their interpretation and management. 

As a result, an education programme with mentoring 

and support is being implemented. 



Advance Care Planning in Terminally Ill and 

Frail Older Persons: Acceptance of Dying and 

Balancing Experiences, Trust and Control 

Van Camp S. 1 , Piers R. 1 , van Eechoud I. 1 , Grypdonck M. 2 , 

Deveugele M. 3 , Verbeke N. 4 , Van Den Noortgate N. 1 

1 Ghent University Hospital, Department of Geriatrics, 

Ghent, Belgium, 2 Ghent University, Department of 

Social Health and Nursing Sciences, Ghent, Belgium, 

3 Ghent University, Department of General Practice 

and Primary Health Care, Ghent, Belgium, 4 Ghent 

University Hospital, Department of Medical 

Oncology, Ghent, Belgium 

Objective: To get insight into the views and attitudes 

concerning advance care planning (ACP) in older 

persons near the end of their lives. 

Methods: In-depth interviews were conducted in 38 

elderly patients with limited prognosis recruited from 

a hospital, two home care services and three nursing 

homes in Flanders. Interviews were transcribed and 

submitted to thematic analysis. 

Results: The majority of elderly was willing to talk 

about death and dying. However, in some elderly 

non-acceptance of their nearing death made ACP 

conversations impossible. Most of the elderly had 

already talked about their preferences, some of them 

had even written it down. The content of these 

preferences was mostly influenced by their personal 

experiences and fears. Most seemed less interested in 



planning other end-of-life situations being outside of 

their power of imagination. Other factors 

determining if patients proceed to ACP were trust in 

familymembers/physician and the need for control. 

Conclusions and practical implications: The 

meaning a patient gives to ACP is influenced by the 

acceptance of death as a possibility, past experiences 

and personal fears, the need for control, and trust in 

the physician and/or family. Thorough 

communication exploring and understanding these 

factors is essential to assure the quality of ACP. 



Disease Trajectories in Nursing Home Patients 

Husebo B.S. 1,2 , Hylen Ranhoff A. 2,3 , Sandvik R. 4 , Omland 

G. 4 , Aarsland D. 5,6 , Gysels M. 7 , Francke A. 8 , Hertogh C. 8 , 

Ribbe M. 8 , Deliens L. 8,9 , Husebo S.B. 10 




Dementia, Bergen, Norway, 3 Diakon Hospital, Oslo, 

Norway, 4 University of Bergen, Public Health and 

Primary Health Care, Bergen, Norway, 5 University of 

Bergen, Stavanger University Hospital, Stavanger, 

Norway, 6 University of Oslo, Akershus University 

Hospital, Oslo, Norway, 7 University of Barcelona, 

Barcelona Centre for International Health Research, 

Barcelona, Spain, 8 VU University Medical Center, 

Department of Nursing Home Medicine, Amsterdam, 

Netherlands, 9 Ghent University & Vrije Universiteit 

Brussel, Department of End-of-Life Care, Brussel, 

Belgium, 10 Centre of Dignity, Red Cross Nursing 

Home, Bergen, Norway 

Research aims: About 17 500 patients die in 

Norwegian nursing homes (NH) every year, 14-27% of 

these patients have diagnoses of cancer, 75% heart 

failure, and 80% dementia. Little is known about their 

last months and days regarding medical treatment, 

needs for multi-professional care, advance directives, 

and cost-benefits. To improve our knowledge about 

patients` prognoses, how to understand and treat 

their needs, and to handle prioritization, we aim to 

compare cancer patients with heart failure in longterm 

care (LTC) patients in a prospective 2 years 

longitudinal study. 

Methods: Three separate studies will be performed: 

1. In depth semi-structured interviews will include 3 

groups of patients and relatives (each N=10) regarding 

their information, needs and wishes (qualitative 

study). 

2. Cancer (N=120) and non-cancer NH patients 

(N=220) will be examined comprehensively with 

functional measurements, and follow-up will be 

performed over a 2 years period, including end-of-life 


3. Cost-benefit analyses investigate medical treatment 

and compare 120 cancer NH patients with matched 

hospital patients. 

Paired-Samples T-Test for repeated measures and 

Independent-Samples T-Test for comparison between 

groups will be used. Intracluster correlation 

coefficient analyzes by One-way analysis of variance 

(ANOVA). 

Conclusion: We expect new scientific knowledge 

which will contribute to better services for NH 

patients. At the EAPC conference we will describe the 

comprehensive approach of the study protocol and 

stimulate further international collaboration. We 

stimulate other countries to develop a replica of this 

study in their own country, and hence, joining this 

international collaboration, based upon relevant 

experiences by an international research group 

(experts from Norway, Catalonia, Belgium, the 

Netherlands and England) resulting from a PRISMA 

expert meeting. 



The Impact of Introducing End of Life 

Pathways to Aged Care Facilities in Rural 

Australia 

Mitchell G.K. 1 , Bucetti A. 1 , Nicholson C. 2 , McDonald K. 3 

1University of Queensland, Discipline of General 

Practice, Ipswich, Australia, 2University of 

Queensland, UQ/Mater Centre for Healtcare 

Innovation, South Brisbane, Australia, 

3Murrumbidgee Division of General Practice, Leeton, 

Australia 

Background: Rural Residential Aged Care Facilities 

(RACF) care for frail people. They are under-resourced, 

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and the care available is mainly generalist care. A 

project aimed at improving palliative care skills and 

knowledge in RACFs in the Murray Valley area of 

Australia. This involved targeted education for all 

levels of care staff and general practitioners (GPs), and 

the introduction of palliative care pathways to 

participating facilities. 

Research aims: To assess the impact of introducing 

palliative care pathways and associated education to 

RACFs in rural Australia. 

Study design and methods: 

1. Before and after assessment using focus groups of 

RACF staff and the primary carers of residents. 

Thematic analysis of data. 

2. Before and after assessment of indicators of quality 

delivery of palliative care. 

Results: Seventeen aged care facilities caring for ~720 

residents participated. Care delivered before the 

intervention was judged by primary carers to be of a 

high standard, but staff members were uncertain that 

they were doing the right thing, and interactions with 

anxious relatives were challenging. There was 

improved self-reported knowledge and confidence of 

the staff. They expressed far more confidence in 

approaching advance care planning and 

communication with primary carers. Primary carers 

reported improved care. Successful introduction of 

care pathways is contingent on the pathway criteria 

suiting the aged care environment; The facility having 

qualified staff for authorised to action the pathway, 

implementation education is provided, and GPs are 

included in the implementation process. Most quality 

care indicators did not improve over the course of the 

project. Referrals to hospital were predicted by the 

trajectory of the resident’s illness rather than their 

current functional state, or the presence of a care plan. 

Conclusion: Palliative care pathways and education 

of RACF staff improve confidence in managing dying 

residents and their caregivers more appropriately. 



“Investigating the Myth that Older People Are 

Being Admitted to Hospital from Care Homes 

for End of Life Care”? A Prospective Study 

between June and September 2009 of 75 

Patients over the Age of 80 Years Admitted to 

Hospital from a Care Home 

Leach C. 1 , Wilson J. 1 , Matheson C. 1 

1 Wexham Park Hospital, Slough, United Kingdom 

Within current practice clinicians felt care home 

residents were admitted to hospital for end of life care 

that could have been managed in the care home. 

With deaths set to increase by 17% by 2030 (Gomes & 

Higginson 2008) there was a need to test this myth 

and analyse factors influencing admission for 

informed service development. The aims of the study 

were to: 

1. Establish the number and circumstances of 

admissions from care homes to Accident and 

Emergency (A&E) and the Acute Medical Unit (AMU), 

followed by detailed analysis of deaths 

2. Ascertain, via peer review with retrospective 

analysis, if with further support, a proportion of 

patients could have remained in the care home. 

All care home residents admitted to A&E and AMU 

were identified by reception staff between June and 

September 2009. The authors recorded data about 

admission from the referral letter, ambulance and 

hospital notes, onto a proforma. 75 patients were 

admitted.14 (19%) patients died; 6 could have been 

managed in the care home. These admissions may 

have been avoided by advanced care planning and 

enhanced resources for symptom control. 8 died 

needing acute trust care (all within 8 days), which is 

an appropriate use of hospital resources. 53 (71%) 

were admissions via emergency ambulance, of which 

nurses referred 90%. All deaths considered 

manageable in the care home came from this cohort. 

Critique of methodology revealed that 23 admissions 

were missed (it is only possible retrospectively to gain 

data electronically). There is no reason to suspect bias. 

It is a partial myth that care home residents are 

admitted to hospital for end of life care that could 

have been provided in the care home. Some deaths 

are the result of an acutely ill older person. Practice 

development is underway with care home staff and 

GPs to deliver advance care planning and focused end 

of life care. There is recognition of training 

requirements for management of the acutely unwell 

patient also. No funding was received. 



Palliative Care for Older People: Better 

Practices 

Hall S. 1 , Petkova H. 1 , Tsouros A.D. 2 , Costantini M. 3 , 



Rehabililtation, London, United Kingdom, 2 WHO 

Regional Office for Europe, Noncommunicable 

Diseases, Strategies and Risk Factors, Copenhagen, 

Denmark, 3 National Institute for Cancer Research, 

Regional Palliative Care Network, Genoa, Italy 

Aims: This booklet, which was facilitated by an EAPC 

taskforce, is the third of a series published by the 

World Health Organization raising awareness of the 

need for better palliative care. It aims to provide 

examples of better palliative care practices for older 

people to help those involved in planning and 

supporting care-oriented services appropriately and 

effectively. 

Methods: 177 examples of better palliative care 

practices for older people were identified from 

literature searches and from an international call for 

examples through 14 organizations, including the 

EAPC and the European Union Geriatric Medicine 

Society. 36 examples are described in the publication, 

and a further 141 will be available on our website 

(www.kcl.ac.uk/palliative). Examples were assessed for 

inclusion by an expert group. This publication takes 

both an individual person and a health systems 

approach, focusing on examples from or relevant to 

the WHO European Region. The publication is 

intended for policy-makers, decision-makers, planners 

and multidisciplinary professionals concerned with 

the care and quality of life of older people. 

Results: There are 17 sections, and examples range 

from improving palliative care for older people within 

the whole health system to specific smaller examples 

such as improving palliative care in care homes. Most 

examples await rigorous evaluation of effectiveness. 

Conclusions: It is encouraging that we found many 

examples of innovative approaches to improve 

palliative care for older people. However, since many 

of these have not been rigorously evaluated, they can 

best be described as emerging, or promising, rather 

than best practices. High-quality research is urgently 

needed on palliative care in general, and especially on 

palliative care for older people. Given the limited 

health budgets in most countries, such research needs 

to include information on the cost-effectiveness of 

treatment and services. 

Funding: The Maruzza Lefebvre D’Ovidio 

Foundation. 



Clinical and Biochemical Nutritional Status 

among Non-cancerous Elderly Patients with 

Pressure Sores 

Dziegielewska S. 1 , Wysocka E. 1 , Kudzia M. 2 , Torlinski L. 1 

1 Poznan University of Medical Sciences, Department 

of Clinical Chemistry and Laboratory Medicine, 

Poznań, Poland, 2 Home Hospice for Adults of 

Association of Volunteers of Palliative Care in 

Wielkopolska, Poznań, Poland 

Bed-bound, non-cancerous, elderly patients are at risk 

to develop pressure sores. Identification of nutritional 

problems can facilitate strategies which need to be 

employed in this patient with bed-sores at the end of 

their life. 

Aim of this study was to investigate clinical and 

nutritional status among non-cancerous elderly 

patients with different severity of pressure sores. 

Method: Newly admitted 313 elderly patients to 

Home Hospice For Adults Of Association Of 

Volunteers Of Palliative Care in Wielkopolska were 

clinically assessed and 42 of them were non-cancerous 

with pressure sores in sacral region of 10-15 cm in 

diameter. Bed-sores severity were assessed according 

to Thorrance scale. They were divided as patients with 

second (PS2) (n=11, 83±7 y.o.), third (PS3) (n=12, 

83±7 y.o.), fourth (PS4) (n=10, 78±10 y.o.) and fifth 

(PS5) (n=9, 75±15 y.o.) stage pressure sores. There was 

no one with the first stage. Feeding status was assessed 

by Mini Nutritional Assessment -Short Form (MNA- 

SF). We assessed complete blood count (CBC), 

erythrocytes sedimentation rate (ESR), plasma 

albumin (Alb), lipids and glucose (G0’) levels, as well 

as HbA 1 c (only non-diabetic patients were included). 

Results: 

1. All patients were malnourished - MNA-SF as follow: 

PS2: 4,9±2,8; PS3: 2,5±1,5; PS4: 3,4±3,0; PS5: 2,7±1,1 

and did not differ significantly. 

2. Subgroups PS2 - PS5 did not differ in age, waist 

circumference, ESR, WBC, RBC, HCT, HGB, MCV, 

RDW, MCH, MCHC, PLT, glucose and HbA 1 c levels, 

and lipid profile. 

3. The PS5 had the lowest systolic blood pressure 

(106±9 mmHg), Alb level (20,4 ±5,3g/l) and the 

highest red division width (RDW) (15,3±1,1%). 

4. The positive correlation MNA-SF&G0’ was observed 

in whole 42-persons group (R=0,54; p=0,0002) and 

from PS2 to PS4 subgroups. The positive correlation 

MNA-SF& Alb was found in PS4 subgroup only. 

Conclusions: These data suggest that protein 

deficiency is the biggest problem in elderly noncancerous 

patients with pressure sores. 



Developing End of Life Care in Care Homes 

without Nursing: An Appreciative Approach 

Campion C. 1 

1 St Christophers Hospice, London, United Kingdom 

Background: There is little support and education 

in relation to death and dying for staff in care homes 

without nursing despite these homes supporting 6.5% 

of UK deaths. The Gold Standards Framework has 

been an important model for the organisation and 

development of end of life care in nursing homes. But 

how does this model fit the residential setting? 

Aim: The aim of the project was to work alongside 

staff using an appreciative inquiry approach in 2 

residential homes in order to develop a model of 

education and support in end of life care that would 

suit the residential home setting. 

Method: A district nurse with palliative care 

experience undertook the project working 2 

days/week. Two residential care homes were chosen 

by the PCT.Two schemes were established. Firstly, an 

organisational structure consisting of a monthly 

supportive care register; those residents who were 

deteriorating rapidly were reviewed weekly/daily. 

Anticipatory care discussions were role-modelled by 

the nurse specialist with district nurses and care home 

staff. Secondly, reflective de-briefing sessions where 

each death was discussed were used as a forum for 

emotional support and teaching. A reflective diary 

was used and key challenges identified. Data were 

collected through a pre and post staff knowledge 

survey; and, a prospective audit of deaths regarding 

admissions to hospital. 

Results: Results show reduced hospital admissions 

and an increase in discussions with residents/families. 

The reflective debriefing sessions were key for staff 

education and support. Challenges included: primary 

care involvement, prescribing ‘anticipatory’ 

medication for the last days of life, and, finding an 

appropriate model for monthly register discussions. 

Conclusion: Residential homes need increased 

collaboration from primary care with increased 

support and empowerment for care staff. These 

factors are vital if the dying phase of an older person’s 

life in residential care homes is to be dignified and 

respectful. 



A Retrospective Survey of Attendance of Care 

Home Residents to the Emergency 

Department of a District General Hospital and 

Evaluation of Attendees with Life-limiting, 

Progressive Disease 

Pender N.J. 1 , Pain L.C. 1 , Carr M.E. 2 , Stirling L.C. 3 , 

Bjorndal B.E. 4 

1 London Deanery, Palliative Medicine, London, 

United Kingdom, 2 London Deanery, General Practice, 

London, United Kingdom, 3 Camden, UCLH & 

Islington ELiPSe Palliative Care Team, London, United 

Kingdom, 4 Whipps Cross University Hospital NHS 

Trust, Palliative Medicine, London, United Kingdom 

Aims: To determine the reasons for and outcomes of 

presentation of patients from care homes to the 

emergency department (ED) of an urban district 

general hospital. To evaluate attendees with lifelimiting, 

progressive disease (LLPD). 

Method: A retrospective review of case notes of 

residents of local care homes presenting to the ED of 

an urban district general hospital over a 1 month 

period. Demographic, medical and outcome of 

attendance data were collected. 

Results: 138 care home residents presented to the ED 

within the study period. 108 (78%) case notes were 


eviewed. The mean age was 82 (range 45-95). 77 

(71%) residents were transferred from residential 

homes and 31 (29%) from nursing homes. 5 (4.6%) 

attendees were reviewed by their general practitioner 

(GP) prior to hospital transfer. 52 (48%) were 

admitted to hospital, with a mean length of stay of 13 

days (range 0.5-56 days). 8 (7%) died in hospital. 

39 (36%) attendances were following a fall, 47 (44%) 

had dementia and 18 (17%) had a provisional 

diagnosis of lower respiratory tract infection (LRTI). 

62 (57%) had a LLPD. Attendees with a LLPD 

presented more frequently to the ED with poor oral 

intake (11% Vs 0%, p< 0.05, z-test), had a provisional 

diagnosis of LRTI (24% Vs 7%, p< 0.05, z-test) and 

were more likely to have documented provisional 

diagnoses (97% Vs 76%, p< 0.005, z-test). No 

statistical differences exist for likelihood of admission, 

length of stay, place of discharge or death in hospital. 

However, those who had LLPD and uncontrolled 

symptoms were more likely to have a hospital death 

(3% Vs 0%, p< 0.005, z-test). 

Conclusion: Few care home patients are reviewed by 

their GP prior to hospital transfer. Falls, dementia and 

LRTI are common features of attendances to the ED. 

Patients with LLPD more frequently present with 

poor oral intake, have LRTIs and have provisional 

diagnoses made early in admission. Those with LLPD 

and uncontrolled symptoms are more likely to die as 

inpatients. 

No funding was required for this survey. 



Palliative Care for Persons with Dementia - A 

Guidance for Person-centered an Gender 

Sensitive Communication 

Heimerl K. 1 , Eggenberger E. 1 , Reitinger E. 1 


Organizational Ethics, Wien, Austria 

Aims: This project aims at publishing a guidance on 

communication issues for health professionals 

working in any care setting where people with 

dementia might live and die. It is contracted by the 

Austrian Ministry of Health. The guidance targets at 

supporting professionals in dealing with challenging 

situations and aims to foster good communication 

practice in dementia care. 

Methods: The guidance draws on the follwing data 

that were generated in prior research projects: 

1. A systematic review that assesses the evidence of 

communication skills training for persons with 

dementia 

2. An in depth literature research on person-centered 

and gender sensitive communication 

3. A research project that yielded two case studies 

concerning methods of person centered 

communication in nursing homes 

4. Two interdisciplinary and qualitative focus groups 

in hospitals researching the question: what are major 

challenges in communicating with persons with 

dementia in acute care settings? 

Results: The guidance consists of the following 

elements: 

1. Basic communication methods, skills and attitudes 

2. Useful tools, publications and websites 

3. Gender sensitive communication and gender 

analysis 

4. Person centered communication and validation 

5. Palliative Care and end-of-life Care 

6. Organization development and evaluation 

7. Evidence for communication skills trainings 

8. Communication for different professions and 

organizations. 

Conclusion: Health care professionals in hospitals 

face major challenges while caring for persons with 

dementia. Whereas there has already been gathered 

considerable knowledge for communication with 

persons with dementia in nursing homes, there is a 

paucity of data and knowledge concerning the 

situation in hospitals, in home care and in palliative 

care settings. The guidance aims at bridging this gap 

and transferring knowledge to any setting where 

dementia care takes place. 



Gender Sensitive Hospice and Palliative Care 

Culture in the Care for the Elderly 

Reitinger E. 1 , Beyer S. 2 

1 Alpen-Adria University of Klagenfurt, IFF - Palliative 

Care and Organisational Ethics, Vienna, Austria, 

2 Hospice Austria, Vienna, Austria 

Background: Palliative care for the elderly is gaining 

importance. When taking individual needs seriously, 

gender has to be acknowledged as a relevant category. 

Gender issues so far have been underrepresented 

within the context of palliative care research for 

elderly people. 

Aims: The aim of the presented project is to unfold 

the diversity of meanings of gender in the context of 

hospice and palliative care for frail elderly. The “doing 

gender” of care situations and the complex 

interactions between individual, symbolic and 

structural gender effects are subject to the analyses. 

Methods: In following those questions we organised 

a four step process. 

1) A literature review was made and key researchers 

and experts in the field in German speaking countries 

were identified. 

2) We invited these experts, practitioners and post 

graduate students to a transdisciplinary workshop, 

where inputs and discussions were moderated. 

3) A book publication interrelated all the important 

findings. 

4) Expert interviews followed. 

Results: Findings indicate that there are basic ethical 

issues that are interrelated with care, body, touch and 

spirituality that have to be seen in discussing gender. 

Practitioners’ perspectives highlight the need to look 

closely on gender themes arising within care 

interactions. Power relations constitute an important 

aspect. Researchers discuss the interconnection of 

structures and construction of gender as well as 

certain symptoms as pain and depression. Diversity 

and organisational dimensions have to be taken into 

account. 

Conclusion: As our findings suggest gender 

sensitivity is a multidimensional process that always 

has to do with attentiveness, interaction, reflection 

and structures. “Doing gender” can involve 

appreciative and irritating interventions. In palliative 

and hospice care for the elderly gender culture and 

political dimensions always play an important role. 



Systematization of the Nursing Assistance for 

Depression in the Elderly with Palliative Care 

do Amaral J.B. 1,2 , Vasconcelos C.D.S. 3 , dos Santos 

B.M.C. 3 , Nascimento C.S.P. 3 , Britto O.A.D.S. 3 , Oliveira 

R.S. 3 , Gianezeli A.P., de Menezes M.D.R. 1 

1 Federal University of Bahia, Graduate Program in 

Nursing, School of Nursing, Salvador, Brazil, 2 Bahiana 

School of Medicine and Public Health, Nursing, 

Salvador, Brazil, 3 University Center Jorge Amado, 

Nurse, Salvador, Brazil 

With the population aging, Brazilian studies have 

demonstrated the increase in occurrence of 

psychiatric diseases, with depression as the most 

common disorder for this age group. The prevalence 

rates vary between 5% and 35% when the different 

forms and severity of depression are taken under 

consideration. When depression is portrayed in the 

elderly with palliative care we can perceive that in 

addition to this group’s peculiarities the debilitating 

and progressive course of the incurable disease entails 

a greater intensification of physical, emotional, 

psychological and social symptoms, reverberating in 

the quality of life by making the process of death full 

of suffering for the elderly and their families. Nursing 

has an important role in the care of these patients and 

for that reason, it systemizes its assistance through 

steps that are essential to meet the needs of customer 

care and family members in its multiple and complex 

dimensions. The present article aims to present the 

SAE (Nursing Care System) with palliative care to the 

elderly with depression. This is a qualitative study 

based on literature review, with data taken from 

books, articles, journals written in Portuguese and 

electronic media in the period between 2000 and 

2008. We believe that this work contributes to a 

reflection about the behavior and role of nurses in the 

nursing care for the elderly with Cerebral 

Insufficiency -Depression, emphasizing the role of the 

family in care planning. 





Level Two Palliative Care Provision: A Novel 

Sharing of Expertises 

Tracey G. 1 , O’Reilly V. 1 , Donohoe D. 1 


Ireland 

Background: The Extended Care Unit is the largest 

provider of in-patient care of the three specialities on 

campus- Care of the Elderly, Rheumatology 

Rehabilitation and Specialist Palliative Care. The 

palliative philosophy guides care, with the residents 

and their families being treated in a holistic manner 

through a multidisciplinary approach. The beds are 

categorized as 60 Nursing Home Support Scheme beds 

and 40 Level 2 Palliative Care (PC 2). 

Objective: The PC 2 categorisation recognises the 

need for continuing care amongst people with life 

limiting illness of short prognosis, when they can no 

longer be cared for at home. This group benefit from 

the expertise of healthcare professionals with 

additional training and experience in palliative care. 

Methods: In order to support and develop PC 2 care 

delivery certain steps were taken including- 

Development of an admissions policy. 

Creation of an Interdisciplinary Admissions 

Committee (IDAC) involving personnel from both 

extended and palliative care. 

Development of links and support from the specialist 

palliative care team. 

Development of clinical governance structures 

Results: Referrals are made or sanctioned as 

appropriate by a Palliative Care Consultant. The IDAC 

arrange for a suitability assessment prior to admission 

to insure that the unit can meet the person’s needs 

and expectations. Specialist palliative care support is 

provided through an SHO and the Palliative Care ANP 

on a regular basis and through integrated working 

with the extended care medical, nursing and the 

wider multidisciplinary team. 

Conclusions: The objective is to provide 

quantitative and qualitative data to represent service 

provision with a view to aid further development of 

the service. 



Oral Health in Elederly Patients of the Family 

Medicine Clinic “Dr. Ignacio Chavez” (Mexico, 

City) Associated with Health Related Quality 

of Life 

Sanchez Murguiondo M. 1 , Roman M. 1 , Davila R. 2 , 

Gonzalez Pedraza A. 2 , Holguin-Licón M. 3 , Grijalva M.G. 4 

1 ISSSTE, Oral Care, Mexico, Mexico, 2 ISSSTE, UNAM, 

Mexico, Mexico, 3 Cepamex, Mexico, Mexico, 4 ISSSTE, 

Mexico, Mexico 

The main causes for the loss of teeth in the population 

are dental cavities and periodontal illness. The quality 

of life of the elderly patients is affected due the eating 

problems and trouble in their social relations they 

present due to aletations in their teeth. We research 

oral health and the grade of edentulism of the elderly 

patients trough the use of CPOD index and the 

Kennedy classification and associate them with life 

quality, nutritional state, chronic pathologies and 

social demographic variables. We studied 102 patients 

in a convenience and non probabilistic samples. It 

was used statistic analysis with student t, anova, 

Spearman coefficent correlation and SPSS program. A 

significant relation was found between loss of teeth 

with age, hypertension and speak and pronounce 

correctly, and between nutritional state with teeth 

cavities. A deficient oral health was found. The only 

dimension of oral health related quality of life 

associated with edentulism was speak and pronounce 

properly. Edentulism was not associated with 

nutritional state. 



Changing Attitudes towards Care Homes and 

the Elderly - A Community Health Promotion 

Approach 

Hartley N.A. 1 , Goodhead A. 1 


Sonces, 2004, a large London hospice has developed 

and delivered a successful ´health promotion´ project 

with local primary and secondary schools. Children 

147 


(Thursday)


(Thursday) 


and students work alongside dying patients and their 

families, creating large pieces of artwork. As part of the 

process, evaluation results tell us that attitudes towards 

hospices, death and dying are changed. The project 

has captured imagination and has been taken up 

nationally and internationally by other hospices and 

palliative care units. This presentation follows current 

developments of the project as it is now modified and 

rolled out into care homes across London. Although 

the initial project worked alongside schools at the 

hospice, current developments link up care homes 

together with a broad range of significant community 

groups such as schools, churches, pubs and others. The 

hospice arts team and the child bereavement team 

support the care home and a chosen community 

group to carry out the four week project together once, 

with the expectation that the project will be repeated 

annually. Ongoing support is available from the 

hospice education centre in the form of four education 

and support days over the year, where participants are 

invited to come together to share experiences and 

learn further from each others projects. The 

presentation will focus on: 

Showing the results of the pilot project carried out 

with three care homes 

Fully outlining the project as it has developed 

Sharing a ´how to do it´ pack 

Sharing evaluation results as carried out as part of the 

pilot 

It is the aim of the project to further develop a health 

promotion and community responsibility philosophy 

across care homes and amongst the communities 

within which they sit. 

It is hoped that the project will capture the 

imagination of practitioners working in both hospices 

and care homes and be picked up by others as an 

exemplar of promoting healthier attitudes towards 

the end of life, and in particular the elderly. 



Pharmaceutical Cost Analysis in Palliative 

Care 

Figueirinhas Â.M. 1 , Fonseca N. 1 , Bernardo A. 1 , Almeida 

M.C. 1 

1 Hospital Residencial do Mar, Loures, Portugal 

This retrospective study aimed to evaluate the drug 

utilization and related costs during the palliative 

phase of care in Hospital Residêncial do Mar ( HRMar). 

A sample of 16 palliative patients from the national 

network of continuous care under treatment in 

HRMar in 2009 was chosen as our target population. 

We have evaluated the daily cost of drug therapy over 

a period of one year. Due to the daily cost dispersion 

in the population, three intervals of cost were 

considered to classify the population elements. This 

procedure allowed a simplification of the cost analysis 

and help in the definition of a strategy for drug total 

cost reduction. 

The study shows that the costs of medication can be 

reduced without decrease of therapeutic efficiency 

through a judicious replacement of those drugs whose 

global consumption has the most significative impact 

in the total pharmaceutical budget. 



Living Will Completion Rates Among 

Albertans, a Population Based Survey 

Wilson D. 1 , Cohen J. 2 , Hewitt J. 3 

1 University of Alberta, Nursing, Edmonton, AB, 

Canada, 2 Vrije Universiteit Brussel, End-of-Life Care 

Research Group, Brussels, Belgium, 3 University of 

Alberta, Kinesiology, Edmonton, AB, Canada 

Research aims: In Canada, living wills or advance 

directives have been legally sanctioned for over 10 

years in most provinces. Few surveys have been done 

to determine the proportion of adults who have taken 

this step for a preferred future. A 2010 telephone 

survey of a representative sample of adult Albertans 

was undertaken to gain this information; this study 

thus adds to a limited knowledge base. 

Study design and methods: The University of 

Alberta’s Population Research Laboratory added 7 

questions in their annual cross-Alberta telephone 

survey. In May-July, 1,203 Albertans were surveyed. 

This survey is carefully conducted to ensure correct 

population proportions are included for results highly 

(95%) representative of adults aged 18+. Data for the 7 

questions and socio-demographic questions were 

obtained and descriptive comparative tests 

undertaken for initial findings on advance directives. 

Results: Of all responders, 43.6% reported having a 

living will or advance directive now and another 

42.1% indicated they are planning one. Descriptive 

comparative findings illustrate some major 

differences among Albertans with regard to living will 

completion, findings that will be the focus of this 

discussion. 

Conclusion: Albertans have a surprisingly high rate 

of advance directive completion. Alberta is a young 

province with only 10-11% consistently aged 65+, so 

population aging is not an apparent factor for open 

recognition and action in preparing for the end of life. 

Other factors contributing to a high completion rate 

should be the subject of further study. Funded in part 

by a grant #HOA-80057: Timely Access and Seamless 

Transitions in Rural Palliative/End-of-Life Care, 

through the CIHR Institute of Cancer Research and 

Institute of Health Services and Policy Research to 

Allison Williams and Donna Wilson (Co-Principal 

Investigators). 



Sense and Sensitivity: CPR in the Palliative 

Care Setting 

Marley K.A. 1 , Finnegan C. 2 , Sulaivany E. 3 , Smith J. 4 , 

Groves K.E. 5 , McGlinchey T. 6 

1 Marie Curie Hospice Liverpool, Liverpool, United 

Kingdom, 2 St John’s Hospice, Wirral, United 

Kingdom, 3 St Rocco’s Hospice, Warrington, United 

Kingdom, 4 Countess of Chester Hospital, Chester, 

United Kingdom, 5 Queenscourt Hospice, Southport, 

United Kingdom, 6 Marie Curie Palliative Care 

Institute Liverpool, Liverpool, United Kingdom 

Background: The United Kingdom Resuscitation 

Council has issued guidelines about the provision of 

cardiopulmonary resuscitation (CPR) in UK 

healthcare institutions. It has also produced 

guidelines on decisions relating to CPR. All hospices 

are bound by these and are required to provide basic 

life support and have staff trained in this procedure 

although CPR may not appropriate for many of their 

patients. 

Aims: To audit the CPR policies of specialist palliative 

care units and review CPR decisions relating to CPR 

for patients seen by specialist palliative care in 

hospices, hospitals and in the community 

Method: A review of the CPR policies of Specialist 

Palliative Care Inpatient units and an audit of CPR 

decisions for patients who had received Palliative Care 

prior to death. 

Results: The majority of hospice clinical staff had 

received basic life support training in the last year 

(85% - 100%). All inpatient units had information 

about CPR in the patient information leaflet. There 

have been 3 cardiac arrests in the inpatient units in 

the last 5 years. Decisions relating to CPR were more 

likely to be discussed with families than patients. 

Conversations with relatives or patients were more 

often about the stage of disease rather than CPR. CPR 

was usually not offered due to low chance of success. 

Decisions relating to CPR were more likely to be made 

in the week before death in acute hospitals 

Discussion: Decisions relating to CPR are being 

made in accordance with national guidance in 

patients receiving Palliative care. Cardiac arrest is not 

unheard of in the hospice setting and staff should 

maintain basic life support skills. Clinically 

inappropriate treatments need not be offered to 

patients or families and discussions with patients and 

families should be sensitive and in the context of the 

stage of disease and goals of care rather than whether 

or not to attempt CPR. 



Why Are Russians Suffering More from 

Unrelieved Pain? 

Usenko O.I. 1 , Ryabova L.M. 2 , Svyatova S.V. 3 

1 Tampa General Hospital, Tampa, FL, United States, 

2 Clinical Hospital No 81, Oncology, Seversk, Russian 

Federation, 3 Clinical Hospital No 11, Novokuznetsk, 

Russian Federation 

The diagram depicting opioid consumption in the 

Russian Federation from 1992 to 2008 published by 

the Pain & Policy Studies Group looks like “the heart 

rhythm of a patent in agony”: the highest level of 

opioid consumption was during the time of the USSR 

(4.7593 ME in 1992), followed by extreme swings 

during “Perestroyka” (0.7725-2.7019-1.3700 ME in 

1995-2000-2004), and succeeded by a negative 

tendency in 2007-2008 (1.6760 and 1.6006 ME 

accordingly). 

Aim: Discover the reasons for the decreasing level of 

opioid consumption in modern Russia compared 

with the USSR. 

Method: Qualitative empirical research based on a 

review of regulations that govern opioids in Russia 

and interviews of physicians involved in cancer pain 

treatment for the past two decades who have 

witnessed the reforms of the health care system in the 

Russian Federation since the collapse of the USSR. 

Results: Russian control policies for the prescription 

of opioids have not changed remarkably. Under the 

law, since the Soviet time, terminally-ill cancer 

patients have a right to free pain medication, as 

prescribed by a physician. Currently, this regulation is 

limited by the amount of governmental financial 

support. In 2010, the support for medication by the 

national government was 17.7 US dollars per patient 

per month. For the last several years, domestic opioids 

such as Buprenorphine, Prosidolum, and specially 

blended opioids in powder form have disappeared. 

The cost of modern time-release opioids from 

Western pharmaceutical companies is prohibitively 

expensive. For example, in 2010 the cost of MST- 

Continus 10 mg No.20 was approximately 29.8 US 

Dollars, Fentanyl 12.5µh/h No.5 -76.5 US Dollars. 

Thus, physicians may prescribe only affordable, 

domestic, injectable Morphine and Promedolum to 

treat severe cancer pain. 

Conclusion: Currently, the most serious obstacles 

for adequate pain relief in Russia are an ineffective 

drug availability policy and dependence on products 

from the Western pharmaceutical industry. 



National Strategy for Palliative Care 

Development: SWOT Analysis 

Milicevic N. 1 

1 Center for Palliative Care and Palliative Medicine 

‘BELhospice’, Belgrade, Serbia 

At present palliative care in Serbia is almost nonexisting. 

For that reason the Serbian government 

adopted National Palliative Care Strategy as the part 

of National program Serbia against cancer, with 

overall objective to integrate palliative care into 

Serbian health-care system, in order to become 

inalienable element of the patients’ rights. 

Aim: To explore the circumstances which are 

favorable and unfavorable for achieving attainable 

objectives of the strategy. 

Method: SWOT analysis of recently adopted national 

strategy for palliative care development. 

Results: The facts that problem is recognized and 

strategy adopted by the Serbian government and that 

there is well developed network of home care based 

services and available beds in our hospitals are among 

the most favorable factors. On the other hand, lack of 

education in this field among professionals and poor 

understanding what palliative care is, both among 

professionals and public, are among the other 

unfavorable factors. 

Conclusion: Since the palliative care is a new 

approach for health care professionals, policy makers 

and the public in Serbia, and since there are many 

other unfavorable factors, implementation of National 

Palliative Care Strategy presents big challenge for our 

society at whole and for all of us who consider good 

quality palliative care as a basic human right. 

Keywords: Palliative care, SWOT analysis, National 

strategy 



Identification of Measures to Improve 

Palliative Care in Germany: A Nation-wide 

Delphi Study with a Public Health Approach 

Behmann M. 1 , Jünger S. 2 , Wahnschaffe K. 1 , Radbruch 

L. 3,4 , Schneider N. 1 



Research, Hannover, Germany, 2 RWTH Aachen 

University, Department of Palliative Medicine, 

Aachen, Germany, 3 University of Bonn, Department 

of Palliative Medicine, Bonn, Germany, 4 Malteser 

Hospital Bonn/Rhein-Sieg, Centre for Palliative 


Research aims: In 2009, key targets for public 

health initiatives to improve palliative care in 


Germany were defined and prioritised. The aim of this 

follow-up study is the identification of concrete 

measures to achieve these targets. 

Study designs and methods: A three-round 

Delphi study with stakeholders acting on the meso 

and macro level of the German healthcare system (e.g. 

representatives of patient organisations, health 

insurance funds, politics, medical and nursing 

associations) is undertaken. In the first Delphi round, 

participants were asked to propose up to five measures 

for each of the six key targets identified during the 

previous study, using a semi-structured questionnaire. 

The free-text answers were inductively analysed with 


Results: In total, 107 experts responded to the first 

survey round, resulting in a broad range of measures 

for each key target on the micro-, meso- and marcolevel. 

After data reduction, 37 measures were 

extracted and grouped in 6 major categories: family 

carers, qualification, quality, public relations, services, 

coordination. For example, the category “family 

carers” comprises the measures: legal advice for family 

carers; professionally conducted training for family 

carers; the right to palliative care leave; extensive 

availability of respite care; consequent integration of 

family carers in decision making procedures; further 

development of bereavement services. 

Conclusion: Since the measures were collected on a 

broad base including stakeholders from different 

relevant fields, enhanced acceptance on part of 

decision makers in the healthcare system can be 

expected. The range of measures on different levels of 

policy, health care and education presents a 

substantiated basis for the elaboration of targeted 

action plans to implement these measures. 

Prioritisation of measures in the second and third 

Delphi round will provide empirical support for 

advocacy. 

Funding: German Research Foundation 



The International Pain Policy Fellowship: 

Improving Opioid Availability and 

Accessibility 

Maurer M.A. 1 , Ryan K.M. 1 , Cleary J.F. 1 , Callaway M. 2 

1 University of Wisconsin, Pain & Policy Studies 

Group, Madison, WI, United States, 2 Open Society 

Institute, International Palliative Care Initiative, New 


Aims: The relief of severe pain, a critical component 

of palliative care, cannot be accomplished without 

improving availability and access to opioid analgesics. 

Unduly strict national drug control policies are 

recognized as a significant barrier to patient access to 

opioid analgesics. The International Pain Policy 

Fellowship (IPPF) program was developed to: 

1) empower healthcare professionals from low- and 

middle-income countries to work with their 

governments to evaluate and recommend systems 

and policy changes to make opioid analgesics 

available for patients with pain, and 

2) develop pain policy experts to address the 

enormous need for opioid availability around the 

world. The objective of this study is to describe the 

progress to date resulting from the IPPF program. 

Methods: Two cohorts of healthcare professionals 

have been awarded Fellowships, the first in 2006 and 

a second in 2008, totaling 17 Fellows from 15 

countries. All Fellows attended an initial training 

session to learn about the roles and functioning of the 

international drug control system and create a 

national Action Plan to improve opioid availability in 

their country. For the remainder of the Fellowship, 

international experts provided technical assistance to 

the Fellows to implement their national Action Plans. 

Results: Progress made by the Fellows includes: 

successful importation of oral morphine; ensuring the 

availability of opioids in at least one pharmacy per 

geographical region 24 hours a day and 7 days a week; 

and working with the Ministry of Health to change 

opioid prescribing regulations. 

Conclusion: The IPPF, with some of the world’s 

experts in opioid availability, has empowered alreadymotivated 

health professionals to work with mentors 

and colleagues, resulting in significant progress 

towards overcoming barriers to opioid availability in 

their countries. 

Acknowledgments: Fellows, Open Society 

Institute, International Palliative Care Initiative and 

Lance Armstrong Foundation. 



WHO´s Efforts to Improve Availability and 

Accessibility of Controlled Medicines, 

Including Opioid Analgesics, around the 

World 




Objectives: To present current and future activities 

by the World Health Organization´s Access to 

Controlled Medications Programme. 

Description: In 2005, the World Health Assembly 

and the United Nation´s Economic and Social Council 

adopted each a resolution recognizing that access to 

opioid analgesics is insufficient around the world. They 

requested the World Health Organization (WHO) and 

the International Narcotics Control Board (INCB) to 

investigate how to support countries in solving this 

problem. WHO developed the Access to Controlled 

Medications Programme (ACMP) in consultation with 

the INCB. Since 2007 it is managing this Programme. It 

will support countries when improving access to opioid 

analgesics and other medicines controlled under the 

international drug control conventions. 

The ACMP published treatment guidelines on 

persisting pain in children and policy guidelines (both 

early 2011). It will now develop other guidelines that 

together will cover all various types of pain and 

(together with INCB) a manual on estimating the 

need for opioids by national authorities. The ACMP 

will assist governments on reviewing the national 

policies and legislation, improving professional 

training and overcoming bias against rational medical 

use of controlled medicines. 

Conclusion: We recommend that countries work 

with the Programme as much as possible in order to 

reach adequate levels of provision of controlled 

medicines. 

Source of funding: Dutch Ministry of Health, 

Welfare and Sport and various other non-commercial 

entities. 



Developing a Network Wide Policy for the 

Prescription and Administration of Oxygen in 

Specialist Palliative Care Inpatient Settings 

Bronnert R. 1 , Radcliffe C. 1 

1 West Midlands Palliative Medicine Training Scheme, 

West Midlands, United Kingdom 

Aims: In 2009 the National Patient Safety Agency 

produced a Rapid Response Report about oxygen 

safety. By March 2010, all hospitals were required to 

action recommendations that: 

1)pulse oximetry be available in all locations using 

oxygen 

2) oxygen be prescribed in line with 2008 British 

Thoracic Society (BTS) guidelines 

3) a multi-disciplinary group be responsible for local 

policy and training. 

The local network-wide palliative care audit and 

guidelines group agreed that hospices should comply 

with these recommendations to ensure safe practice 

but felt that aspects of the BTS policy required 

clarification and amendment for a specialist palliative 

care setting. We aimed to produce a network-wide 

policy for prescription and administration of oxygen 

for inpatient palliative care settings. 

Method: Simultaneous audits of current practice in 

oxygen prescription and administration were carried 

out in two hospices. The BTS oxygen policy and local 

oxygen guidelines were reviewed. These were used to 

create a draft oxygen policy which will be piloted 

before network-wide endorsement. 

Results: The local policy discusses prescription, 

administration and monitoring of oxygen therapy and 

initiation in urgent situations. Key differences include: 

Management of patients at risk of hypercapnia in 

absence of blood gas monitoring facilities 

Clear flow charts for oxygen titration including: 

prompts about identifying patients at risk of 

hypercapnia, when titration is inappropriate because 

high flow oxygen is immediately required & 

acceptable oxygen saturation ranges 

Clarification about when it is inappropriate to 

routinely measure oxygen sats 

Conclusion: This policy for prescription and 

administration of oxygen within a hospice setting 

ensures safer care whilst maintaining the principles of 

palliative management. It shows it is possible to strike 

a balance between adopting nationally driven 



practice change and maintaining a holistic, 

individualised approach to patient care. 



Implementation of Palliative Care Clinical 

Guidelines at The National University 

Hospital of Iceland 

Jonsson J.E. 1 , Jonsdottir A. 1 , Skulason B. 1 , Olafsdottir 

K.L. 1 , Fridriksdottir N. 1 , Eyjolfsdottir S. 1 , Sigurdardottir 

V. 1,2 

1 The National University Hospital, The Palliative Care 

Consultation Team, Reykjavik, Iceland, 2 The National 

University Hospital, The Palliative Care Unit, 

Kopavogur, Iceland 

Introduction: In 2002 the World Health 

Organization changed it’s 1990 definition of palliative 

care (PC) to include all those diagnosed with a lifethreatening 

illness and not only those terminally ill. 

Since the late 90´s, guidelines on treatment decisionmaking 

at end-of-life have been in use at The National 

University Hospital in Iceland. In 2008, the board of 

the Medical and Nursing Councils entrusted the PC 

team with the revision of these guidelines. 

Method: Following a literature review the team 

translated and adapted the US PC guideline from the 

Institute for Clinical Systems Improvement. The main 

goal of the guidelines is to enable professionals to 

diagnose the need for PC, to decide on the goal of 

treatment, to assess and treat common symptoms and 

to improve communication. Approved by the 

executive board, the Icelandic guidelines were 

published on-line in 2009. The on-line version is 

interactive with direct access to online references. A 

pocket-guide was distributed to all physicians and 

nurses, and posters reflecting the guidelines were 

distributed to all wards. Informational meetings for all 

staff were arranged together with special meetings for 

consultants, head nurses and specific wards. A group 

of key-person within the hospital were established. 

The guidelines have also been included into the 

medical and nursing curriculum. 

Results: In general the guidelines have been well 

accepted and the implementation is still ongoing. The 

on-line version is accessible at the internal and 

external website of the hospital and the website of the 

Directorate of Health (DOH). In collaboration with 

the DOH an information brochure about PC for the 

public is in preparation. 

Conclusion: The next step is to assess the use of the 

new guidelines and whether there has been a change 

in practice and documentation of communication 

and treatment goals. 



Consumption of Opioid Analgetics in Croatia 

Rimac M. 1 , Majurec M. 2 

1 Center for Palliative Care and Medicine, Zagreb, 

Croatia, 2 Oncology Centre for Women, Zagreb, 

Croatia 

Aim: We want to show whether implementationion 

of palliative care into health system of Croatia can 

rationalize consumption of opioids analgetics and 

improve the quality of life of terminally ill patients 

During 2007., 2008., 2009. Consumption of drugs 

grew every years 6-7%, which of course led to more 

money spending, but not necessarily better quality of 

life. 

The given data were got from the Agency for 

Medicinal products and Medical Devices (HALMED). 

In 2009 we opbserved analgetics consumption ( 

INN):morphin, opium, hydromorphon, oksikodon, 

fentanil, buprenorfin, tramadol.Total spending of 

those analgetics are: 1.764.252,51 packages, and that 

is 9,5.mil.€ (or 12,6 mil.$). 

Outpatients consumption was 1.610.312,27 packages 

(that spent 8,9mil. €, or 11,8mil$). 

Tramadol, as neopioid narco analgetics was used the 

most (96,3% for which the money spent was 75,05%). 

Buprenorphin was spent, too, but not only for pain 

because it was also used as treatment for addiction. 

We don´t have the exact data for each group. 

But surprise was very low using of morphin as gold 

standard for pain therapy in palliative care ,just 

0,091%,of total outpatients consuming.It was just 

1.467,23 packages(60.ooo€,or80.000$). Fentanyl used 

much more:29.121,27 packages, which means 1,8 % 

of total outpatients consumption, i.e. 12,69% 

(1.35mil€ or 1,5mil˘$). 

If we show these dana in DDD/1000/day: i.e. 

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morphin: 0,003 DDD/1000/day; 

Fentanyl:0,55DDD/1000/day. 

Conclusion: 

1. We need to improve palliative care approach to 

pain therapy 

2. Maybe morphin is still a taboo in Croatia 

3. More education for health professionals 

4. National strategy and guidance to pain therapy and 




Only Months to Live: Patients and Family 

Members’ Experiences of Prognostic 

Disclosure in Lung Cancer 

Horne G. 1,2 , Seymour J. 3 , Payne S. 4 


Nottingham, United Kingdom, 2 Rowcroft Hospice, 

Torquay, United Kingdom, 3 University of 

Nottingham, Sue Ryder Care Professor of Palliative 

and End of Life Studies, Nottingham, United 

Kingdom, 4 University of Lancaster, Director of the 

International Observatory on End of Life Care, Help 

the Hospices Chair in Hospice Studies, Lancaster, 


Research aims: This paper examines the impact of 

prognostic disclosure on patients with lung cancer 

and their family members. The results were drawn 

from a larger qualitative study which sought to 

explore the experiences of patients and their family 

members about discussing preferences and wishes for 

end of life care. 

Study design and methods: The design was a 

cross-sectional qualitative interview study. 25 patients 

with advanced lung cancer (aged 48-83; Male: 18, 

Female: 7) and 23 family members mainly from lower 

socioeconomic backgrounds took part. They were 

recruited from a tertiary and local cancer centre in 

northern England. A constructivist grounded theory 

approach was used to analyse the data. 

Results: Patients reported confusion from doctors’ 

use of numbers or percentages. Patients compared 

others’ prognosis to make sense of theirs. Being given 

a prediction of time left to live was reported as waiting 

for a ‘time bomb’ to go off and when people outlived 

their prognosis family members were left ‘in limbo’. 

People did not report a revision of their prognosis over 

time. People reported shock, anger, depression and 

insomnia following disclosure of a prognosis with 

some saying that ‘knowing is harmful’. Four patients 

who had lived beyond their prognosis questioned the 

accuracy of medical science, reported loss of faith in 

their physician or hoped for more time. 

Conclusion: The disclosure of a prognosis caused 

suffering for patients and their families, taking away 

the uncertainty of death and removing any sense of 

‘normality’. Patients and family members reported 

that following disclosure they attempted to avoid 

causing each other further distress by not talking 

about death and dying. These findings question who 

benefits from the disclosure of a prognosis, clinicians 

or patients? 

Source of funding: The first author´s PhD research 

fellowship is funded by Macmillan Cancer Support 

through its Research Capacity Development 

Programme 



Dying in your Own Way. A Contribution to 

Advanced Care Planning in the Netherlands 

Jansen W.J. 1 , Donkers E.C. 2 

1 VU University Medical Center, Anesthesiology, 

Amsterdam, Netherlands, 2 Transmural Network 

Middle Holland, Gouda, Netherlands 

Talking about death and dying is often a taboo. The 

wishes of patients regarding their deaths are 

insufficiently known and/or not followed. To create 

open communication more understanding is needed 

about different opinions about death and dying. In an 

online survey, performed by Motivaction, 1570 Dutch 

people were interviewed. Based on the model of 

Mentality, it turned out that the Dutch population can 

be divided into five segments. During the project these 

five segments were the starting point for an awareness 

campaign and the development of specific products 

and service options.The five segments are:The 

proactive (18%): critical attitude, death is not a taboo; 

they think and talk about it in order to maintain 

control.The easy-going (22%): death is not 

immediately an issue; they live their lives.The social 

(33%): Seldom discuss death; they prefer to follow the 

norm for their group. They expect that all the 

necessary arrangements will be made for them.The 

faithful (12%): Death is part of life; they have a 

preconceived notion about the final stages of life.The 

rational (15%): The final stage of life is an enormous 

taboo; sickness and death do not fit in with their vision 

of a successful life.This knowledge has led to the 

development of a program focused on professional 

caregivers. The first stage is to create awareness about 

the importance of communication about the 

segmentation:- How do I recognize to which segment 

the patient in front of me belongs?- Which method of 

communication fits in best with each segment?-To 

which group do I belong myself and how does that 

influence my communication?An in-company 

training course has been developed to focus on these 

aspects as part of a team framework. A variety of 

products has been developed to support professional 

caregivers working with this segmentation.This 

project started at a regional level in the Netherlands. 

Recently a strategy has been developed to introduce 

the concept and the products to the whole country. 



How Do GPs Manage Depression in Palliative 

Care Patients? A Focus Group Study 

Warmenhoven F. 1 , van Hoogstraten E. 1 , Prins J. 2 , Vissers 

K. 3 , van Weel C. 4 , van Rijswijk E. 5 

1 UMC St Radboud, Nijmegen, Netherlands, 2 UMC St 

Radboud, Dept of Medical Psychology, Nijmegen, 

Netherlands, 3 UMC St Radboud, Dept of Palliative 

Care, Nijmegen, Netherlands, 4 UMC St Radboud, 

Dept of Primary Care, Nijmegen, Netherlands, 5 UMC 

St Radboud, Dept of Primary Care and Dept of 

Palliative Care, Nijmegen, Netherlands 

Aim: Depression is highly prevalent in palliative care 

patients. There are concerns of both under- and 

overdiagnosis and treatment. In the Netherlands 

most palliative care patients are in primary care. The 

aim of this study was to explore how general 

practictioners (GPs) perceive recognition, diagnosis 

and management of depression in patients in a 

palliative trajectory. 

Study design and methods: A focus group study 

was used to study the perception of GPs on depression 

in patients in a palliative care trajectory. Purposive 

sampling revealed a sample GPs with different 

working areas and various expertise in palliative care. 

Cyclic qualitative analysis using constant comparative 

analysis by two researchers who independently coded 

the transcripts thematically using ATLAS.ti. 

Results: Four focus groups with 22 FP’s in total (13 

men, 9 women), lasting approximately 1,5 hour were 

held from February-April 2010. After the third focus 

group saturation was reached. 

FPs describe the diagnostic and therapeutic process of 

depression in palliative care patients as a continuous 

and overlapping process, in which ‘attention’ for 

depressive complaints seems to be a key element. 

Matching the role of the FP as a continuous family 

caregiver, in this process, FPs have much attention for 

patients’ context and background variables. 

They apply criteria for depressive disorder very loosely 

and rely much more on the context of the patient and 

their clinical judgment . They do not define a specific 

method or systematic assessment. Management is 

best described as supportive and discussing emotional 

and existential problems with patients and family 

caregivers. Antidepressant drugs are seldom 

prescribed and sometimes the help of a psychologist is 

asked. The GPs identified a number of factors that 

hamper their role in the diagnostic and therapeutic 

process. 

Conclusion: In general GPs perceive no important 

problems in diagnosing and managing depression but 

state that there is room for improvement. 



Communication of Diagnosis and Prognosis to 

Serious Ill Patients: Perception and Attitudes 

of Health Professionals and Students in Spain 

Montoya R. 1 , Schmidt-Rio J. 1 , Lopez-Robles M.C. 2 , Galvez- 

Lopez R. 3 , Marti C. 1 , Campos-Calderon C. 1 

1 University of Granada, Nursing, Granada, Spain, 

2 Antequera General Hospital, Antequera, Spain, 3 San 

Cecilio General Hospital, Granada, Spain 

Background: In some countries such as Spain 

withholding the diagnosis tends to be a common 

practice, unlike other European countries. 

Methods: Non-validated ad hoc questionnaires to 

measure attitudes towards communication of 

terminal disease´s diagnosis and prognosis were 

administered to 197 healthcare professionals and 

students; 40 Health Practitioners (HP), 68 Registered 

Nurses (RN), 39 3rd year Nursing Students (NS) and 50 

Resident Medical Staff (RMS). Most were women 

(67%) between 25-35 years (34%). ANOVA analysis 

was executed. 

Results: All subjects believe that diagnosis and 

prognosis of a terminal disease should be 

communicated to the patient. RN perceive more 

clearly than other professionals that most patients are 

not informed (p=0.010). All subjects perceive that, in 

most of cases, diagnosis is disclosed to the family in 

first place, but HP believe more strongly that this 

should be the proper attitude compared with other 

professionals (p=0.034). All groups believe that 

patients want to know the diagnosis of terminal 

illness and, furthermore, that they actually know it, 

even if it has not been communicated to them 

specifically. 91.3% of the sample would like to know 

this information if they had a terminal illness 

themselves. Among the reasons for not 

communicating the diagnosis, HP and RMS 

highlighted the patient´s right not to be informed, 

while RN and NS highlighted the family opinion. 

Conclusions: In general, there is a conflict between 

what subjects perceive in their environment and what 

they think should be done. RN seem to be more 

dissatisfied with this situation than other 

professionals. All groups believe that patients want to 

know and they should know in first-hand this 

information. They also think that this knowledge 

would be beneficial to patients, if they want to be 

informed. Family attitude towards diagnosis 

disclosure, and lack of ability of the professionals to 

deal with bad news, might be the core of the problem. 



Simple Skills Secrets: Core Communication 

Skills for Generalist Staff 

Groves K.E. 1 , Baldry C. 1 , Hough J. 1 , Marley K.A. 1 

1 Queenscourt Hospice, Southport, United Kingdom 

Aims: Currently senior UK cancer clinicians, who 

frequently have to break significant news, explain 

complex treatment options or discuss end-of-life 

issues are required to undertake 3 day national 

advanced communication skills training courses. It 

has been shown that communication skills can be 

learned and also that the use of open questions 

increases the number of patient concerns elicited. 

However patients are cared for by professionals of 

varying degrees of seniority across all settings and 

these professionals may also benefit from 

communication skills training to increase confidence 

and improve patient care. 

Design: We present a simple model of 

communication training designed to maximize 

number of patient concerns elicited and facilitate a 

patient-generated plan to address these concerns. The 

simplicity of the model means it is memorable, can be 

delivered in short education sessions, and can be put 

into practice as soon as it is learned, by a variety of 

professionals from hospital and community settings. 

Results: 262 people have undertaken training in this 

communication model in sessions lasting from 1-3 

hours. The participants work in different settings: 

general practices, nursing homes, hospital, hospice 

and district nursing teams. Both clinical and 

administrative staff took part in the course. A 

qualitative analysis of the evaluations showed that 

learners rated the course highly, felt more confident 

in communication after the course and also had a 

greater understanding of the importance of open 

questions. 

Conclusion: Feedback from the training has been 

positive and many staff have been reached who 

would otherwise not have had the chance to 

undertake a longer communication skills course. Brief 

interventions have been shown to be successful in 

patient education and we propose that the same can 

translate to communication skills training for health 





The Association between Spiritual Beliefs and 

Psychological Status in Patients with Life 

Threatening Illness 

Leurent B. 1 , Jones L. 1 , Owen F. 1 , Llewellyn H. 1 , Tookman 

A. 1 , King M. 2 

1 University College London, Marie Curie Palliative 

Care Research Unit, Department of Mental Health 

Sciences, London, United Kingdom, 2 University 

College London, Department of Mental Health 

Sciences, London, United Kingdom 

A heightened awareness of death may elevate 

existential issues amongst patients receiving palliative 

care. Some research suggests religious or spiritual beliefs 

take on more significance at this time and may protect 

against anxiety and depression. However, evidence is 

mixed and suffers major methodological 

shortcomings. In particular many studies are crosssectional 

and have used measures of spiritual belief 

which conflate with psychological variables, artificially 

inflating associations. Moreover most research is US 

based and may not translate well to a more secular UK 

society. This study responds to recent NICE (2004) 

guidance and is driven by the research questions: 

(1) Does the strength of spiritual belief alter as disease 

progresses towards the end of life? 

(2) Do people with stronger spiritual beliefs 

experience less psychological distress? 

In a prospective cohort study, 170 patients (96% 

cancer) receiving specialist palliative care were seen 

three times over ten weeks (baseline, 3 wks and 10 

wks). At each appointment they answered questions 

on their strength of spiritual belief (Beliefs and Values 

Scale), levels of anxiety and depression (HADS), 

distress, somatic symptoms, and medication. At 

baseline participants also answered questions on 

social support and demography. 

Missing data were multiply imputed and the dataset 

was analysed through a generalised estimating 

equation (GEE) model. Strength of belief increased 

slightly but significantly over time, with an average 

increase of .16 points per week (95% CI: .0 to .32, 

p=.05). Belief and psychological status were unrelated 

after controlling for age, sex, duration of illness, social 

support, and medication. 

Results suggest that palliative care patients become 

marginally more spiritual towards end-of-life. The 

lack of association between beliefs and psychological 

status contradicts earlier research which supports the 

idea that beliefs mitigate anxiety and depression in 

patients with serious illness. 



Sensitive and Professional Communication 

Facilitates a Better Acceptance of Prognosis in 

Relatives of Terminal Cancer Patients: A 

Qualitative Study 

Sanz Llorente B. 1 , Cordero Pérez M.A. 1 , Lacasta Reverte 

M.A. 2 , Núñez Olarte J.M. 1 


Unidad de Cuidados Paliativos, Madrid, Spain, 

2 Hospital Universitario La Paz, Unidad de Cuidados 

Paliativos, Madrid, Spain 

Background: In order to deliver high quality care 

and empower terminally ill patients in decisionmaking, 

good quality information and 

communication are essential. Evidence suggests that 

the communication skills of healthcare professionals 

in our own country do not achieve the desired goals of 

enhancing patient and family satisfaction. 

Objectives: To determine if good quality 

information helps to a better acceptation of 

prognosis. 

Methods: 20 primary caregivers were interviewed in 

a palliative care unit using face-to-face open 

interviews, within a qualitative study addressing 

perceived quality of care. All of them had taken care of 

cancer patients hospitalized for more than 2 months. 

Results: 80% of caregivers were women. 65% were 

aged between 40 and 65 years. They all knew about 

prognosis. 58% believed that the information given to 

them had been correct, and 73% had been informed 

in a warm environment. 82% accepted the 

information given and 50% had felt anxious while 

being informed. The support from the team was the 

most valued item that helped in accepting diagnosis 

and prognosis. 40% wanted their loved one to know 

all information while 34% preferred a conspiracy of 

silence within the family. 

Discussion: We already know that the emotional 

status of caregivers is determinant in the process of 

coping and accepting prognosis and diagnosis. The 

acceptance of prognosis can be improved by accurate 

information delivered in a sensitive way, as well as by 

the support given by a well qualified and trained team. 



Training in Communication Skills and 

Management of Cancer Patients. A Survey in 

Two Regional Greek Hospitals 

Konstantis A. 1 , Exiara T. 1 , Michailidou A. 2 , Risggits A. 1 , 

Gidaris E. 1 , Pantelidis D. 1 , Mporgi L. 1 , Papanastasiou S. 1 

1 General Hospital of Komotini, Department of 

Internal Medicine, Komotini, Greece, 2 General 

Hospital of Drama, Department of Internal Medicine, 

Drama, Greece 

Introduction/aim: Cancer patients are a specific 

group that require up to a level a different approach. It 

is not only the diagnosis that determines their 

difference but also the complications and often 

treatment modifications. The aim of this study was to 

investigate the experience and training of medical 

personnel in communication skills and management 

of oncologic patients. 

Methods: 74 doctors [35 specialists(S) and 39 

residents(R)] of two regional Greek hospitals (General 

Hospital of Komotini,General Hospital of Drama) 

only of clinical specialties were included in the study. 

A brief questionnaire has been developed. The 

questionnaire comprised 5 items evaluating the type 

of education of medical personnel in 

communicational skills. Answer options for all 

questions consisted of yes or no. 

Results: Only 30(40.54%) doctors have specific 

training in communication skills [(S):15,38%during 

undergraduate studie(US) 38,46%during postgraduate 

studies(PS) and 46,15% through interviews and 

discussion with more experienced colleagues(ID)/(R): 

62,50%US 12,50%PS and 25%ID ]. 31(41.89%) 

answered that the diagnosis is the most difficult part 

in discussion with oncologic patients and their 

relatives.35(47.29%) found that the most difficult task 

is to discuss the prognosis, 5(6.75%) about remission 

and 3 (4.05%) discussing the end of active treatment 

and start of palliative care 

Conclusion: There are no high rates of specific 

training. Possible solutions to improve the current 

situation are: 

1. Development and publication of regional 

guidelines. 

2. Organization of local groups responsible for 

training in guidelines and their implementation in 

practice. 

3. Training in communicational skills during 

undergraduate studies in medical schools. 

4. Regular meetings in hospitals and interviews with 

specialized professionals in breaking bad news. 

5. Hospital-based training workshops and role/model 

groups. 



Predictors of Patients’ Use of Cancer Support 

Groups: A Longitudinal Study 

Grande G.E. 1 , Arnott J. 1 , Missing C. 1 

1 University of Manchester, School of Nursing, 

Midwifery & Social Work, Manchester, United 


Aims: Randomised controlled trials have 

demonstrated that patients benefit from participation 

in cancer support groups, but only a small minority 

join groups. The study’s aims were to investigate 

factors predicting patients’ use of support groups to 

inform potential future interventions to increase 

support group use where appropriate. 

Study design: Longitudinal study. 

Sample: 192 patients with lung, colorectal (Dukes 

C&D) (105), lung (57) or bladder cancer (30) recruited 

from oncology outpatient clinics. By 12 months 41% 

had died. 

Data collection: self completed questionnaires at 

baseline and two, six and 12 months follow up. 

Baseline data included demographic variables, 

perceived social support, perceived control and 

distress over cancer, coping strategies, views of 

support groups (questionnaire designed from 

qualitative patient interviews). Follow up data 

included health related quality of life, 

recommendations and use of support groups. 

Analysis: Univariate and multivariate logistic 

regression. 


Results: Main variables associated with inclination 

to join a group at baseline were use of other groups or 

cancer support, distress over cancer and having less 

existing support (p< 0.01). Eight (12%) of 69 patients 

had joined a group at six months. Main variables 

associated with joining were being female, poor 

quality of life at two months, distress and receiving a 

recommendation to join a group (p< 0.01). 

Conclusion: Support group users may mainly be 

those who suffer the greatest problems and distress 

and have least support, although this is unlikely to 

mean that those with less acute needs would not 

benefit. Support group use is also related to use of 

other groups and cancer support. Key to future 

intervention is the finding that recommendation 

plays a significant role in uptake, which suggests that 

recommendation by health professionals may be an 

effective way to increase support group use. 

Funder: Dimbleby Cancer Care 



Informing about the Cancer Diagnosis by 

German Physicians 

Diemer W. 1,2 , Laske C. 2,3 , Laske A. 2,3 

1 Group of Protestant Hospitals Herne/Castrop-Rauxel, 

Centre for Palliative Care, Herne, Germany, 

2 University Hospitals Greifswald, Dept. of 

Anaesthesiology, Intensive- and Palliative Care, 

Greifswald, Germany, 3 Sana Hospital Rügen, 

Bergen/Rügen, Germany 

Introduction/research aims: The law on 

specialized palliative home care (SAPV = Spezialisierte 

ambulante Palliativversorgung) was implemented as a 

right for every patient in need in April 2007. 

To assess the quality of palliative care we sent 

questionnaires to physicians. The results can help to 

implement SAPV. 

Methods: We have been sent 600 questionnaires to 

randomly selected physicians in Mecklenburg- 

Western Pomerania/Germany in April 2008 (response 

rate: 34.5%; n=207). They contained 25 questions 

about palliative care and cancer pain therapy. We 

compared the results from 2008 with those of 1999 (T- 

Test). Additionally to the survey of 2008 we 

implemented 21 questions on advance directives. 

Results: 

- „Do you inform your cancer patients about the 

diagnosis ‚cancer’?“: 61.6% always, 33.2% often, 3.2% 

rarely, 2.1% never; no significant change compared to 

1999 

- „Termination of life-sustaining or life-prolonging 

measures in cancer patients in final stage should in 

principle be decided by all parties concerned (patient, 

family and caring team (physicians, nursing staff, 

etc.).“: 82.2% agree, 10.7% indifferent, 7.1% disagree; 

no significant change (p=0.707) 

- „The wishes of the cancer patients in relation to 

therapy reduction and termination of therapy should 

definitely be considered.”: 93.9% agree, 5.1% 

indifferent, 1.0% disagree; there is a positive trend 

(p=0.077) 

- 52.3% of the physicians feel advance directives 

helpful in daily work and 12.1% of the doctors had an 

own advance directive in 2008. 

Conclusion: The information of the cancer patients 

by their physicians has not improved much in the last 

decade. More than one third of the physicians 

(38.4%) do not generally inform their patients about 

the cancer diagnosis. Nearly half of the physicians feel 

that advance directives would not be helpful in their 

daily work. Intensified training of all active physicians 

and medical students as well as a greater 

dissemination of advance directives is necessary. 




Talk about Talking - ‘Safe’ and ‘Challenging’ 

Therapeutic Talk in a UK Independent Cancer 

Support Service 

Cockshott Z. 1 , Payne S. 1 , Thomas C. 2 



2 Lancaster University, Division of Health Research, 


Background and aims: The opportunity for 

emotional talk is considered to be an important aspect 

of psychosocial care in supportive and palliative care 

settings. This abstract focuses on emotional talk as 

one aspect of the findings from a study examining 

client experiences of an Independent Cancer Support 

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Service (ICSS). The service provides counselling, 

complementary and creative therapies to people 

affected by cancer. 

Method: Interviews regarding experiences of the 

ICSS were conducted with 17 clients (cancer patients 

(11) and family (6)). Interview data were subjected to 

thematic analyses based on Grounded Theory 

principles. 

Results: The importance of an opportunity to talk 

about feelings was an almost universal factor in 

clients’ accounts of the emotional support derived 

from the ICSS. Clients receiving complementary 

therapies such as massage, reported frequently 

discussing emotional matters during these sessions, 

indicating that they valued the optional nature of 

emotional talk in such sessions. Conversely, clients 

attending peer groups or ‘talk therapies’ such as 

counselling often described talking in these sessions 

as emotionally ‘hard-work’ or ‘draining’, indicating 

that in such therapies a perceived obligation for 

emotional talk can be experienced as challenging. 

Conclusions: Clients’ accounts of talking at the ICSS 

suggest that they engage in different types of talk in 

therapy sessions, which are experienced as ‘safe’ or 

‘challenging’ depending on clients’ perceived level of 

control over the intensity of emotional expression in 

which they engage. Many clients feel most 

comfortable or ‘safe’ talking in an environment where 

they are able to control or titrate the amount of 

emotional talk taking place. We suggest that what 

might be considered as incidental talk during 

complementary therapy sessions in supportive and 

palliative care is actually vital to psychosocial support 

of these clients, and that its non-obligatory nature is 

what makes it so valuable. 



How Empowered Are Patients in Palliative 

Care? 

Ottolini L. 1 , Uez F. 1 

1 Palliative Care and Hospice Service, Trento, Italy 

The Trento Palliative Care Service assists each year 

350-400 cancer patients;it assists about 250 to 300 of 

them until their death;in about 75% of the cases, the 

death takes place at home;in 20% of the cases,in a 

hospice.In 2009, 50.7% of our patients who died,had 

undergone “active” chemotherapy treatment in the 

terminal stage of their disease (during the last three 

months of life).With reference specifically to these 

latter patients,chemotherapy was suspended,as 

follows:In 41% more than 60 days before they died;In 

26.8% from 22 to 60 days before they died;In 19.5% 

from 8 to 21 days before they died; In 12.7% in their 

last week of life. According to a recent Bristol 

University study, two-thirds of cancer patients do not 

receive the information they need when they are 

subjected to cycles of chemotherapy for palliative 

purposes.In view of the above findings, we deemed it 

useful to ascertain how many of our patients enrolled 

in palliative care treatment and receiving 

chemotherapy,had a clear awareness of the following: 

1) their situation as to the evolution of the disease and 

the meaning of their prognosis; 

2) objectives and costs (both financial and in terms of 

quality of life) of the cancer treatment to which they 

were subjected. 

In January 2010, we began a survey of all our 

patients,to be concluded in December 2010. The 

survey is based on a questionnaire that seeks to 

ascertain the following: 

1) For all patients:their degree of understanding and 

awareness about their own situation (pathology / 

prognosis); 

2) For patients undergoing chemotherapy: their 

understanding of the treatment’s objectives. 

We are currently collecting the data, however from a 

first analysis of the findings we can already infer some 

important considerations about the difficulty of 

having complete, effective communication with 

cancer patients, especially when the disease offers no 

prospect for a cure. This make real empowerment 

difficult for the patient, even when he/she is cared for 

in a palliative care setting. 



Emotional Reactions and Actions of Children 

and Adolescents against Illness Advanced 

Parents 

Rodríguez Morera A. 1 , Limonero J.T. 1 

1 Catalan Institute of Oncology, Psychooncology, 

Girona, Spain 

Research aims: Describing the emotional responses 

and thoughts of children and adolescents against 

cancer illness advanced parents and during the 

mourning. Describe the factors that may influence 

positively or negatively at any time (before, during 

and after the loss), in the welfare of the minors. Create 

protocols for preventive intervention and 

psychotherapeutic intervention tailored to our youth 

population, in order to facilitate them to face the 

losses due to illness of the father or mother. 

Study design and methods (selection criteria, 

variables, statistics): Type of study: Nonrandomized 

longitudinal descriptive study. Patients: 

Children aged between 5 and 18 years of patients with 

advanced or terminal cancer who are making control 

and/or treatment at the Catalan Institute of Oncology 

of the University Hospital of Girona Dr. Josep Trueta. 

Study population also will be the parents of these 

minors. The Control Group will consist of children 

and adolescents who have not a parent with cancer. 

Results: The results will be evaluated through SPSS, 

and analysis will be descriptive and by inferential 

statistics, taken as the value of significance p < 

0.05.Also, as a complement, there will be qualitative 

analysis of data collected from structured interviews 

done to parents and children. 

Conclusion: There is no much research on how the 

distress experienced by children and adolescents who 

are informed of the proximity of death of the father or 

mother, as well as how they face it. At each evolutive 

stage, the child needs a type of protocols to prevent 

future psychopathological disorders and complicated 

mourning. For this, much research and development 

of specific programs is needed. This research, 

implicitly, will support families in order to meet the 

needs of the child or adolescent, being itself a therapy 

tool, preventing emotional problems that can appear 

in the minor during the disease process and death of a 

parent. 



Study Circle - Dynamic Communication 

Wedenby C.V. 1 , Johansson H. 2 , Westman A.-M. 2 

1 Sahlgrenska University Hospital, Occupational 

Therapy, Gothenburg, Sweden, 2 Sahlgrenska 

University Hospital, Gothenburg, Sweden 

Aim: In the everyday work in a palliative care unit 

placed in Sahlgrenska University Hospital we found us 

struggling in our meetings with; palliative patients, 

patients’ next of kin and within the intraprofessional 

team. 

The aim was to get a common platform how to 

interact with respect, tolerance and dignity for all 

team members (kitchen staff, secretary, assistant 

nurse, nurse, occupational- and physiotherapist, 

priest, social worker in health care, medical doctor, 

senior consultant). 

Method: We decided to use study circle as a tool to 

reach our aims. Study circle is based on reading, 

reflection and discussion. We were trained to be study 

circle leaders and after that we conducted all team 

members in six study circle groups. Each group 

consists of 6-7 members and gathered six times every 

fortnight. Study circle members read articles as a 

preparation before every session. The topics where 

ethics and palliative care. All materials were retrieved 

from the Vårdalinstitutet, the Swedish Institute for 

Health Sciences, and all articles was worked up and 

written in a popular style. 

Results: A common platform was created from open 

hearted dynamic discussions and concluded with 

several question at issue, for example; interaction, 

priorities and teamwork. 

An improvement of the psychosocial working 

environment was also developed in a higher level of 

respect and tolerance. 

Conclusion: To use the study circle as a tool for 

communication was an excellent and creative way to 

reflect these severe questions. It gave us the platform 

to start the process of development in meetings and 

interaction. 



Spirituality, Hope and Mental Health in 

Breast Cancer Patients 

Fallah R. 1 , Golzari M. 1 , Dastani M. 1 , Zahirodin A. 1 , Nafici 

N. 1 , Akbari M.E. 1 

1 Cancer Research Center, Shahid Beheshti University 

of Medical Sciences, Tehran, Iran, Islamic Republic of 

Breast Cancer as the first prevalent malignant disease 

in Iranian woman affected the mental health and 

psychosocial behaviors. In the other hand the Hope 

and Spirituality will improve Quality and may even 

Quantity of life in Breast Cancer (BC) Patients. In this 

study the relation of mental health, hope and 

spirituality in BC cases are investigated. 

Patients and method: This is a cross sectional, 

correlated study which is done in 91 BC patient with 

at least 8 months after diagnosis, and age between 30- 

60 years old, the pathological stages were I-II-III and 

stage IV cases were excluded. 

The questionnaires were GHQ-28, for mantel health; 

Schneider for Hope and Spiritual experience of Mr 

Ghobari and coworkers for evaluating the Spiritual 

effect. Questionnaires were completed for all cases. 

The data were analyzed by SPSS sops software. 

Results: Mental health significantly was correlated 

with hope, anxiety and sleep disorders. also had 

negative relation with hope (P< 0.05); spirituality was 

significantly correlated with hope and mental health. 

The patients with acceptable meaning of life had 

negative relation with mental health disorders. 

Conclusion: Hope and mental health improvement 

will affect the quality and even quantity of life in BC 

patients and Should be in more Consideration in their 

management. 



Clinical Supervision Experiences. Pediatric 

Palliative Care Team, Seven Years Sharing the 

Care 

Rodio G.F. 1,2,3 , Lascar E. 1 , Nallar M. 1 , Piccone S. 1 , 

Gonzalez M. 1 , Wainer R. 1 , Steed S. 1 , Oregas del Valle A. 1 , 

Nespralejo A. 1 

1 Children Hospital ‘Ricardo Gutierrez’, Buenos Aires, 

Argentina, 2 Member of the Board of AAMyCP, Buenos 

Aires, Argentina, 3 W. Hope Medical Care, Buenos 

Aires, Argentina 

Background: The Pediatric Palliative Care Team has 

been working since 1996. Its composition has changed 

over the years. Currently, it includes: four physicians, 

four volunteers, a pharmacist, an occupational 

therapist, an anthropologist and a psychologist for 

external supervision.In 2003, an external clinical 

supervision was incorporated in order to:· Improve 

communication,· Integrate knowledge, skills and 

attitudes,· Optimize the performance of the team,· 

Prevent burnout,· Encourage self-care 

Objective: Share clinical supervision experiences of 

the PPC team at the Children’s Hospital, during 2003 - 

2010.Reflect on the benefits of supervision for the 

making of interventions, sharing feelings about the 

intensity of the task and the death of children and 

support of their families. 

Method: The whole team participates in a two-and-ahalf 

hour monthly supervision where:· Clinical cases 

and/or difficult situations are exposed· Ways of 

intervention are agreed· Resilience in the team 

members is strengthened· A space for grief and 

bereavement of the deceased patients is created. 

Results and conclusions: After 7 years of including 

clinical supervision, the PPC team referred that they: 

• Improved communications skills· Integrated 

knowledge that fostered professional and personal 

growth 

• Created new projects and educational activities 

• Optimized handling of difficult cases and delivering 

bad news 

• Developed attitudes to prevent burnout· Enhanced 

self-care in each of the members. 



Creating an Environment for Dialogue in 

Palliative Care — A Collaborative Project 

Involving Staff, Artists, Artisans, Patients and 

their Families and Carers 

Olgarsson H. 1 , Windus M.-J. 1 , Rosengren E. 2 , Damm E. 1 , 

Axtelius V. 1 , Lewenhaupt C. 1 , Fürst C.J. 1 


1 Stockholms Sjukhem Foundation, Stockholm, 

Sweden, 2 Stockholms Health Authority, Culture 

Department, Art and Crafts, Stockholm, Sweden 

Aim: To work together to create a physical setting on 

a palliative care ward that promotes dialogue in an 

environment that projects feelings of safety and 

openness. 

Background: Dialogue and communication are one 

of the cornerstones of palliative care. Respectful and 

empathetic dialogue and conversation are among the 

most important required conditions for relieving 

psychological, social and spiritual/existential 

suffering as well as alleviating physical symptoms. 

However, general or recreational areas on the ward, 

corridors and patients’ rooms are seldom designed or 

adapted for conversations of a serious nature. Artwork 

and handicrafts, while often present, rarely contribute 

towards creating an optimal palliative care 

environment. In addition, staff, patients and their 

relatives and carers differ greatly in what they perceive 

as meaningful stimulation for productive 

conversation. Certain factors such as age, background, 

ethnicity and the progress of the disease are 

significant determiners in this respect and should be 

taken into account. 

Method: Artists, artisans and staff meet regularly for 

three months on a palliative care ward. Patients and 

their relatives and carers are invited to take part in 

dialogues concerning a “meeting room” in the 

broadest sense. Art and handicrafts are produced on 

the ward and models for a“dialogue setting” are 

created collaboratively. The process is documented on 

an ongoing basis through photography, interviews 

and diary entries. 

Result: The process will be presented through 

documents, photography and quotes from interviews 

with those involved in the process. The portrayed 

meeting places will be described as models but also, it 

is hoped, created as appropriate settings for dialogues 

and meetings between individuals on the ward. 



A Booklet for Psychologist in Palliative Care 

to Evaluating Distress and Identity Crisis 

Van Lander V.L.A. 1 , SRAAP 

1 CHU Clermont-Ferrand, Centre de Soins Palliatifs, 

Cébazat, France 

Patient’s distress at the end of life is the subject of a 

growing number of studies since 1997 and of many 

works of the National Comprehensive Cancer 

Network. In 2009, Dr. Chochinov wrote that the 

appreciation of the nature of distress concerning 

death is the new challenge of palliative care. This new 

doctoral research, begun in 2009, is the first one 

taking advantage of the material obtained by 

psychologists in their usual interviews with patients 

in palliative care. Its main objective is to study distress 

with psychological concepts of identity crisis and to 

show that distress may be a sign of psychic 

development. The secondary objectives are to create a 

booklet for psychologists, to identify characteristics of 

patients monitoring and evaluated the intersubjective 

space created by the interviews. 

Methodology: This study is observational and 

multi-centric. All psychologists of palliative care 

teams in a French region received proposals to be coinvestigators 

during one year (2010) in using a 

booklet for collecting their clinical analysis. They first 

tested it with 23 patients. The final form of the 

bokklet consists of 35 items to assess after interviews 

with most often a visual analog scale. This requires 

from psychologists a position of meta-analysis: the 

patient´s mental processes and its own-transfer and 

interview’s situation. The relationship between the 

mental processes of patients and psychologists is 

studied via correlation coefficients and multivariate 

statistical techniques. The evolution of these relations 

during the interviews is measured by means of mixed 

models for repeated data, and Ancova. 

Results: 14 psychologists participate in the study. At 

mid-stage they have completed 81 booklets and 223 

questionnaires. Initial results indicate a significant 

distress to more than half of the interviews and a 

correlation between distress and identity crisis. We 

can already conclude that distress is related to the 

importance of ruptures of identity. 



Damn Pain! Intervention and Listening 

Considerations of the Psychologist Facing the 

Patient with Pain in Palliative Care 

Geovanini F.C.M. 1 

1 FIOCRUZ, ENSP - Escola Nacional de Saúde Pública, 


Specific objectives: To present and discuss the role 

of psychology in the care of patients with pain in a 

palliative care ward, highlighting the limits and 

possibilities of psychological intervention. 

Methodology: The methodology used for treatment 

as well as for its analysis and presentation, based on 

the theoretical foundations of psychoanalysis and the 

tools of psycho-oncology. We selected two patients 

undergoing psychological treatment in a palliative 

care hospital. 

The criteria for inclusion were highlighted: female 

patients with gynecological malignancy, with intense 

expression of cancer pain. Contributing to their 

selection was the fact that both brought to light a 

symbolic pain related to motherhood, however, with 

different ways within the therapeutic process of 

feeling construction and psychic expression of an 

unassimilable pain that of symbolized pain. . In 

presenting this study we add the clinical experience to 

the theoretical development, using only vignettes of 

treatments. 

Results: It was possible to comparatively analyze 

these two case studies of psychological intervention 

highlighting the benefits and limitations through the 

demand and desire of the patient in suffering. Given 

the outcome of the consultations, we analyze the 

different possibilities of coming to terms with ones´ 

sickness, ones´ pain and ultimately ones´ own death. 

Conclusion: The cry and speech are resources 

available to the individual who suffers. The call can be 

considered the most primitive feature, preceding the 

word, to express grief. In slip scream the word, we 

understand that the pain until then disorganized and 

diffuse, can become a pain, that through the symbolic 

resource, gained new meanings. In both treatments, 

we recognize the power of the word associated with 

attentive listening and available that the psychologist 

offers, can promote new and unique meanings. 



Research Methodology for Multi-site Research 

in Palliative Care - The Palliative Care Clinical 

Studies Collaborative (PaCCSC) Model 

Shelby-James T.M. 1 , Fazekas B. 2 , Hardy J. 3 , Currow D. 1 


Supportive Services, Daw Park, Australia, 

2 Repatriation General Hospital, Palliative Care, Daw 

Park, Australia, 3 Mater Health Services, Palliative Care, 

South Brisbane, Australia 

Conducting multi-site RCTs is challenging in any 

setting. RCTs in a palliative care require careful 

consideration in design and implementation to 

account for the population being studied. PaCCSC is 

conducting RCTs across 6 symptom nodes (pain, 

delirium, breathlessness, anorexia, nausea, 

constipation) that has methodology specifically 

designed for the palliative care setting. The studies are 

being conducted in 14 sites and will involve 

recruitment of more 750 participants of whom more 

than 400 have already completed. 

Methods: Protocols have been designed with short 

efficacy time points (3-7 days) and longer 

effectiveness end points including 

pharmacoeconomics. Patient reported measures are 

kept to a minimum to reduce burden. Support from 

clinical staff is vital for RCTs. All protocols have been 

designed to mirror the clinical practice of the majority 

of the services wherever possible. To avoid burdening 

clinicians with trial related activities each study has 

broad eligibility criteria provided to clinical staff to 

identify potential participants. Those referred are 

screened by research staff against more detailed 

eligibility criteria. Depending on local ethical 

approval, research staff obtain informed consent and 

collect most study related measures. 

Procedures are refined to ensure protocols are feasible 

within a clinical setting. Training including role 

playing and scripting ensure consistent between sites 

and accuracy of information during the informed 

consent process especially in response to frequently 

asked question. Regular communication between 

PaCCSC and study sites provides an opportunity to 

discuss problems and refinements to protocols as 


needed. 

Results: Each site has implemented specific 

procedures tailoring the study requirements whilst 

maintaining integrity of the protocol and meeting the 

competing demands of the clinical team 

Conclusions: By careful planning the RCTs are 

successfully underway across Australia in a diverse 

range of settings. 



Developing and Evaluating a Specialist 

Palliative Care Service for People with 

Neurodegenerative Disorders. An Application 

of the MRC Framework for the Design and the 

Evaluation of Complex Interventions 

Veronese S. 1,2 , Oliver D.J. 3 

1 Fondazione F.A.R.O. Onlus, Palliative Care, Torino, 

Italy, 2 University of Kent, Canterbury, United 

Kingdom, 3 University of Kent, Centre for Professional 

Practice, Chatham, United Kingdom 

The MRC Framework (MRC-F) for the design and 

evaluation of complex interventions to improve 

health has been proposed as a guideline for the 

development and the evaluation of new Specialist 

Palliative Care Services (SPCS). 

As a part of a PhD project this tool was used to model 

and assess a SPCS for people severely affected by 

Motor Neurone Disease (ALS/MND), Multiple 

Sclerosis (MS), Parkinson´s Disease and related 

disorders (PD´s). 

The first 3 phases of the framework were employed: 

The theory / preclinical stage included an assessment of 

the existing knowledge by a review of the literature, to 

specify a research question and to plan the 

methodology for the following steps. The phase 1 

(modelling) stage involved a specific education 

programme for the professional members of the 

forthcoming service in order to provide knowledge on 

the clinical features of the specific conditions, training 

on the use of specific equipment nut used commonly 

in cancer care palliative care settings, and to create links 

with other existing services (neurology, respiratory, 

nutritional and rehabilitation). A qualitative need 

assessment was conduced by interviewing 22 patients 

and their family carers, exploring their unmet needs 

and expectations. In parallel 3 focus groups with 

professionals involved in the care of this sample 

allowed to to have their point of view on the creation of 

the new service, to explore the existing services, collect 

information about the potential users. 

The third step consisted in an explorative 

Randomized Controlled Trial (RCT) adopting the 

waiting list procedure aimed at assessing the impact of 

the new SPCS on some Palliative Care Outcomes 

(PCO). The main results showed a clinical and 

statistical significant improvement in the Quality of 

life and physical symptoms of the patients. 

The MRC-F is an helpful tool for a SPCS development. 

A limit is its length that reduce its role in routinely 

clinical settings, but remains and advisable tool for 

research projects. 




Consensus Building on Access to Controlled 

Medicines: A Four-stage Multimethod 

Consensus Procedure 

Jünger S. 1 , Lynch T. 2 , Payne S. 2 , Greenwood A. 2 , Scholten 

W. 3 , Radbruch L. 4,5 


Medicine, Aachen, Germany, 2 Lancaster University, 

International Observatory on End of Life Care, 

Division of Health Research, Lancaster, United 

Kingdom, 3 World Health Organization, Team Leader, 

Access to Controlled Medicines, Geneva, Switzerland, 

4 University of Bonn, Department of Palliative 

Medicine, Bonn, Germany, 5 Malteser Hospital Bonn/ 

Rhein-Sieg, Centre for Palliative Medicine, Bonn, 

Germany 

Research aims: In December 2009, the EU-funded 

project ATOME (Access to Opioid Medication in 

Europe) started with the objective of improving access 

to opioids in 12 European countries. One central 

project aim is the revision of the WHO policy 

Guidelines “Achieving Balance in National Opioids 

Control Policy” (2000) which will be the basis for all 

subsequent work packages. 

Study design and methods: A panel of 30 

renowned experts from palliative care, public health 

and harm reduction was invited to a four-stage 

153 


(Thursday)


(Thursday) 


revision process. As the first step, a qualitative 

inventory of required changes was made by means of 

a structured checklist. Based on the experts’ feedback 

a draft revision of the Guidelines was prepared and 

submitted to a two-round online consensus Delphi 

process. The results of this procedure were discussed 

in a WHO advisory meeting designed to be the final 

step in the consensus process for the document. 

Results: The qualitative inventory resulted in a draft 

revision of the Guidelines meeting requirements on 

different levels such as a broader focus and more 

accurate evidence. Moreover, operationalisation of 

the Guidelines was improved by specifying measures 

(what), procedures (how) and responsibilities (who). 

The Delphi procedure provided concrete indications 

for the rewording of the Guidelines as well as the 

associated text. During the advisory meeting 

persisting controversies were systematically discussed 

for agreement of the final version of the updated 

Guidelines. 

Conclusion: The four-stage multimethod revision 

process with a multiprofessional expert panel results 

in a substantiated revision of the WHO Guidelines. 

Hereby the increasing knowledge on opioid 

medication since the first edition of the Guidelines is 

taken into account. The revised version represents a 

highly relevant instrument for policy makers to 

identify barriers - and eventually for the improvement 

- of the availability, access and affordability of opioids 

for medical use. 



Ethnography in Palliative Care Context: 

Ethical Challenges 

Pastrana T. 1,2 , Goodwin D. 1 , Thomas C. 1 , Payne S. 3 

1 Lancaster University, Division of Health Research, 

Lancaster, United Kingdom, 2 RWTH Aachen 

University, Aachen, Germany, 3 Lancaster University, 



Background: Ethnography is a well established 

method among qualitative researchers that provides 

an important contribution to the understanding of 

real world context and cultures. It focuses on the 

description and understanding of the (sub-)culture 

from the [other person´s] point of view. Therefore the 

following strategies are used to obtain on first hand 

experience (participant observation), ethnographic 

interviews and detailed field descriptions. Beside the 

ethical issues commonly associated to ethnography, 

in settings where participants are vulnerable or 

stressed raises more challenges that are underexplored. 

Aim: Aim of this paper is to discuss some ethical 

issues of doing ethnographic observations in 

palliative care context. 

Method: An ethnography was conducted in a 11-bed 

inpatient specialist palliative medicine unit in 

Germany as an visitor doctor from August to 

September 2010. Data were collected by recording 

field notes of participant observation and undertaking 

ethnographic interviews. About 184 hours participant 

observation was spent shadowing principal members 

of the staff (medical doctor, nurse, and psychologist). 

Results: Particular ethical challenges were 

encountered during the fieldwork. The most 

important issues were: 

1) management of identities, 

2) observation of embarrassing painful and distressing 

situations, 

3) management of relationships in the field, and 

4) observation of ethical conflicts in the field. 

Conclusions: The discussion will explore the 

significance of ethical issues for the researcher as well 

as the development of strategies to solve these 

conflicts. Ethical issues make the conduct of 

ethnography challenging in ways that cannot be 

foreseen or prevented. Advanced research skills as well 

as a constant ethical reflection are required. 



Geographic Themes in Palliative Care 

Research 

Stevens R.J. 1 , Ahmedzai S.H. 1 


Care, Sheffield, United Kingdom 

Background: Geographically based research 

comprises a field of academic and clinical 

development which may have relevance for palliative 

care, especially as services expand their coverage 

across Europe. 

Aims: To identify the main geographic themes in 

palliative care research; to quantify the level of 

development in each theme; and to identify gaps in 

the literature. 

Methods: A search of PubMed found a sample of 

geography-related evidence in palliative care. We 

analysed the abstracts of records found and compiled 

a list of the main themes. We examined the list of 

articles and re-assigned one or more theme to each 

record. Finally we counted the number of times each 

theme was assigned and constructed a frequency 

table. 

Results: The search found 179 articles of potential 

interest, of which 67 included geographic content. 

We identified 14 themes, listed here with frequencies : 

Geographic variations in access to, or use and 

availability of, services [44]; Problems of rural & 

remote locations [12]; Comparative studies with data 

from two or more locations [9]; Planning & provision 

of services using geographic data [8]; Place of death & 

place of care [8]; Geographical information systems 

[6]; Ethnicity & geography [5]; Atlases, gazetteers & 

directories of services [3]; Epidemiology of diseases & 

symptoms [3]; Geographies of patients, families & 

carers [3]; Telehealth & home-based care [3]; 

Geographies of professionals [1]; Managing space & 

the built environment [1]; Industrial relations, politics 

& geography [1]. 

Conclusion: A small yet significant body of 

geographical research is developing in palliative care 

across a range of different but often overlapping 

themes. We identified several themes which may be 

of interest to policymakers, commissioners and 

practitioners but have received very little attention so 

far. Geographically based research needs to be 

explored for its potential benefits to research, services 

and outcomes. 



An Investigation of the Relationship between 

Caring, Death Anxiety and Burnout among 

Palliative Care Nurses 

Nyatanga B. 1 

1 University of Worcester, Allied Health Sciences, 

Worcester, United Kingdom 

Introduction: “Death Anxiety” denotes the 

apprehension often created by human awareness of 

the possibility of death. Humans are unique in that 

they must learn to adapt to the awareness of their own 

ephemeral existence. For nurses working in palliative 

care, death is an unmistakable reality regardless of 

experience and theoretical understanding. Within the 

process of helping patients cope with death, nurses 

provide emotional and social support for the very 

phenomenon that most threatens their own 

existence. Given the universality of death anxiety, it is 

academically interesting and most challenging to 

investigate how it might interact with such other 

variables as caring and burnout. To date there are no 

studies that specifically look at the possible 

association between the three variables. 

Aim: This study investigated the relationship 

between caring, death anxiety and burnout among 

palliative care nurses. 

Methodology: A correlation survey research design 

was used to correlate scores of death anxiety with 

those of burnout. A convenience sample of 213 nurses 

completed three measurement scales on death 

anxiety, burnout and caring. Spearman’s rho 

correlation was used to establish associations between 

variables of interest, and multiple regression to 

determine predictor variables of burnout. 

Results: The results show a positive correlation 

between death anxiety and burnout. The more nurses 

felt unable to control psychological pain and other 

symptoms, the more their death anxiety and burnout 

levels increased. Caring shows as statistically 

significant predictor of burnout. Hospital nurses 

reported highest levels of death anxiety and burnout, 

whilst community nurses showed the least levels. 

Discussion: These results are consistent with 

previous studies. High levels of death anxiety and 

burnout may interfere with nurses’ ability to provide 

effective care or engage in reflective practice. 

Implications of these findings for managers, educators 

and future research are discussed. 



When Is it Acceptable for Palliative Patients 

to Participate in Clinical Trials? A Survey of 

Palliative Care Professionals 

Caulkin R. 1 , Osborne T. 1 , Lobo P. 1 , Thorns A. 1 

1 Pilgrim’s Hospices, Margate, United Kingdom 

Background: The need for good quality research in 

palliative care has been highlighted in the End of Life 

Care Strategy. However, it has historically been 

difficult to recruit palliative patients into clinical 

trials. The limited evidence available suggests 

reluctance amongst palliative care professionals to 

refer their patients to participate in research. 

Aim: To assess the attitudes of palliative care 

professionals towards clinical trials within the 

speciality, and the level of inconvenience / 

intervention they deem acceptable to their patients. 

Method: A questionnaire adapted from a similar 

Australian study was sent to 134 palliative care 

professionals working in hospice, community and 

hospital settings covering a population of 620,000 

across East Kent. Participants were asked their views 

on clinical trials in palliative patients, making use of a 

Likert [bipolar] and frequency scales. Forms were 

completed anonymously. 

Results: Ninety-seven questionnaires were returned 

(72% response rate). 57% of responders were nurses, 

20% healthcare assistants, 13% allied professionals 

and 10% doctors. 39% had previous involvement in 

research. 96% indicated they would be interested in 

referring patients for studies that were quick and easy. 

Only14% were willing to refer to studies involving 

extra tests or visits to hospital. A large proportion were 

willing to refer patients to non-pharmacological 

studies, but were less interested in referring to 

pharmacological studies, with particular reluctance if 

there was a possibility of side effects. 

Detailed analysis will be presented of both the 

quantitative and qualitative data. 

Implications for practice and future work: 

Highlighting factors that influence palliative care 

professionals in referring patients for clinical trials 

may help to identify strategies to improve future 

recruitment into palliative care research. A follow up 

questionnaire study is planned to investigate patient’s 

attitudes towards research. 



Formation of a Palliative Care Research 

Cooperative Group in the United States 

Abernethy A.P. 1,2 , Aziz N. 3 , Basch E. 4 , Bull J. 5 , Cleeland 

C.S. 6 , Currow D.C. 7,8 , Fairclough D. 9 , Hanson L. 10 , Hauser 

J. 11 , Ko D. 12 , Lloyd L. 13 , Morrison R.S. 14 , Otis-Green S. 15 , 

Pantilat S. 16 , Portenoy R.K. 17 , Ritchie C. 18 , Rocker G. 19 , 

Wheeler J.L. 1 , Zafar S.Y. 1 , Kutner J.S. 20 

1 Duke University Medical Center, 

Medicine/Oncology, Durham, NC, United States, 

2 Duke Comprehensive Cancer Center, DUMC, 

Durham, NC, United States, 3 National Institutes of 

Health, National Insitute of Nursing Research, End of 

Life, Palliative Care, and Hospice Office of Extramural 

Programs, Bethesda, MD, United States, 4 Memorial 

Sloan-Kettering Cancer Center, Health Outcomes 

Group, New York, NY, United States, 5 Four Seasons, 

Flat Rock, NC, United States, 6 MD Anderson Cancer 

Center, Department of Symptom Research, Division 

of Internal Medicine, Houston, TX, United States, 


Supportive Services, Division of Medicine, Bedford 

Park, Australia, 8 Repatriation General Hospital, 

Southern Adelaide Palliative Services, Daw Park, 

Australia, 9 Colorado School of Public Health, 

Department of Biostatistics and Informatics, Aurora, 

CO, United States, 10 University of North Carolina- 

Chapel Hill, Division of Geriatrics, Chapel Hill, NC, 

United States, 11 Northwestern University, Feinberg 

School of Medicine, Palliative Care and Home 

Hospice Program, Evanston, IL, United States, 

12 Massachusetts General Hospital, Division of General 

Internal Medicine, Boston, MA, United States, 13 San 

Diego Hospice and The Institute for Palliative 

Medicine, San Diego, CA, United States, 14 Mount Sinai 

School of Medicine, New York, NY, United States, 

15 City of Hope National Medical Center, Division of 

Nursing Research and Education, Duarte, CA, United 

States, 16 University of California - San Francisco, 

Palliative Care Program, Division of Hospital 

Medicine, Department of Medicine, San Francisco, 

CA, United States, 17 Beth Israel Medical Center, 

Department of Pain Medicine and Palliative Care, 

New York, NY, United States, 18 University of Alabama 


at Birmingham, Birmingham-Atlanta VA Geriatric 

Research Education and Clinical Center and the 

Division of Gerontology, Geriatrics, and Palliative 

Care, Birmingham, AL, United States, 19 Dalhousie 

University, Divisions of Respirology and Palliative 

Medicine, Department of Medicine, Halifax, NS, 

Canada, 20 University of Colorado, Division of General 

Internal Medicine, Department of Medicine, Denver, 

CO, United States 

Aims: Limited research capacity, small census of 

many sites, lack of standard methodologies, and poor 

infrastructure have impeded palliative care research. 

In the United States (US), experienced researchers 

have initiated a cooperative group for palliative care 

research. 

Design, methods, statistics: Steps in launching 

the Palliative Care Research Cooperative (PCRC) were: 

(1) promotion of the concept of research capacity 

(2005-10); 

(2) survey of research capacity in US hospice and 

palliative care organizations (2007); 

(3) meeting of interested investigators (January 2010); 

(4) submission of first grant application (March 2010); 

(5) funding for infrastructure and a first clinical trial 

(September 2010); 

(6) survey of >3,000 US hospice and palliative care 

providers (October 2010). 

Results: The 2010 meeting, attended by 25 persons 

from oncology, cardiology, geriatrics, general internal 

medicine, psychology, neurology, pulmonary 

medicine, social work, nursing, public health, resulted 

in: 

(1) commitment to establish the PCRC; 

(2) core principles, including close integration with 

international cooperative groups; 

(3) an approach to PCRC development; 

(4) agreement on a proof-of-concept trial; 

(5) consensus on the research question: In patients 

with life-limiting illness and limited prognosis, does 

discontinuing statin lipid-lowering medication 

reduce survival time or impact cardiovascular adverse 

events, quality of life, anxiety/depression, symptoms, 

or costs?; 

(6) timeline. The NIH/National Institute for Nursing 

Research (NINR) funded PCRC creation and the trial. 

Australian, Canadian, and European collaborators 

informed PCRC development and serve as conduits to 

international networks. 

Conclusion: There is substantial motivation and 

federal investment to advance palliative care research 

via a US cooperative group. Investigator engagement 

confirms commitment to developing an evidence 

base. PCRC alignment with international networks 

will facilitate global clinical trials. 



Development of a Palliative Care Research 

Agenda 

Leng M.E.F. 1 , Namukwaya E. 1 , Grant E. 2 , Jack B. 3 , Long 

W.S. 4 , Murray S. 5 

1 Makerere University, Palliative Care Unit, Kampala, 

Uganda, 2 University of Edinburgh, Global Health 

Academy and Primary Palliative Care Research Group, 

Edinburgh, United Kingdom, 3 Edge Hill University, 

Evidence-Based Practice Research Centre, Ormskirk, 

United Kingdom, 4 Yale University, New Haven, CT, 

United States, 5 University of Edinburgh, Primary 

Palliative Care Research Group, Edinburgh, United 


Aim: A key priority for the new palliative care unit 

(PCU) in the department of medicine at Makerere 

University, Uganda is to initiate and support research. 

A national and international faculty sought to 

develop a coherent agenda with clear goals: identify 

key areas and any gaps in research capacity, develop 

collaboration within and beyond the institution and 

link research to service development and training. 

Method: We held an inaugural forum in March 2009 

to brainstorm a palliative care research agenda. 

Stakeholders, academic colleagues and palliative care 

professionals were asked to submit and prioritise key 

areas. We then held 3 workshops to develop skills in 

data collection and analysis and the writing of 

research proposals A realistic achievable research 

agenda is now being circulated to the research 

network, Makerere University and to potential 

funders. 

Results: The research agenda aims to support, 

develop, deliver and evaluate palliative care in a 

academic African hospital setting and ensure its 

integration into the community with 3 main strands; 

1. Patient needs and perspectives; illness trajectories, 

cultural expectations and issues toward the end of life, 

holistic needs, decision making and the choice of 

place of care 

2. Staff needs and perspectives; identify the gaps in 

confidence, knowledge and skills for the delivery of 

palliative care, explore key strengths and challenges 

including beliefs, systems, culture 

3. Frameworks and models of care; identification of 

patients with palliative care needs, provision of care, 

barriers and blocks for quality and continuity of care, 

and influences on decision making. 

A grant has been awarded to develop this research 

showing the value of this approach. 

Conclusion: Identifying research priorities and 

building capacity takes time but allows for a coherent 

and longitudinal approach to develop. Collaboration 

raises credibility, adds capacity, is mutually beneficial, 

and may help develop future national research 

leaders. 



Preliminary Baseline Results from Poland of a 

Pan-European Phase IV Open-label 

Multicentre Study in Patients with 

Breakthrough Cancer Pain (BTcP) Treated 

with Fentanyl Buccal Tablet (FBT) 

Jarosz J. 1 , Stachowiak A. 2 , Schneid H. 3 

1 Centrum Onkologii-Instytut im. M. Sklodowskiej- 

Curie, Department of Palliative Medecine, Warsaw, 

Poland, 2 SPZOZ Regionalny Zespol Opieki 

Paliatywnej, Bydgoszcz, Poland, 3 Cephalon, Maisons- 

Alfort, France 

Fentanyl buccal tablet (FBT) is a rapid-onset opioid 

indicated for treating adult patients with 

breakthrough cancer pain (BTcP) receiving opioid 

maintenance therapy. FBT should be titrated to a 

successful dose that provides adequate analgesia with 

minimal adverse events. This clinical study was 

designed to evaluate the percentage of patients 

achieving a successful FBT dose, starting titration at 

100 µg or 200 µg (primary objective), in 8 European 

countries. FBT efficacy and safety were secondary 

objectives. The study included a screening period, an 

open-label randomized titration period (patients 

titrated FBT starting at 100 or 200 µg up to successful 

dose [100, 200, 400, 600, 800 µg maximum]) and an 

open-label treatment period (treating up to 8 BTcP 

episodes at the successful dose). An open-label safety 

continuation period may follow. The patient 

inclusion criteria followed the SmPC for FBT. This 

report includes preliminary baseline results of 

enrolled patients in Poland (n=90), mostly in outpatients 

(85%). The following BTcP characteristics 

were reported: 94.4% (85/90) patients had 2 to 4 

episodes/day, 81.1% (33/90) patients had an average 

time from onset to peak intensity of a BTcP episode up 

to 30 min, and 61.1% (55/90) of the patients had BTcP 

duration >30 min. The most common successful FBT 

doses were 200µg (38%) or 400µg (28%). The 

treatment was assessed as easy/convenient for treating 

BTcP by 80.3% (53/66) of the patients. In conclusion, 

these Polish preliminary data are the first BTcP 

characterization and successful dose finding with FBT 

from the largest pan European study of patients with 

BTcP. Final results from the study will provide 

information on the optimal starting dose, the safety, 

and the efficacy of FBT; it will also offer information 

on BTcP characterizations & treatments in real clinical 

practice. 



Respite in Paediatric Palliative Care: Making 

the Case for Case Study Methodology 

Ling J. 1 , McCarron M. 1 , Connaire K. 2 , Payne S. 3 , Coyne I. 1 

1 Trinity College Dublin, School of Nursing and 

Midwifery, Dublin, Ireland, 2 St Francis Hospice, 

Education Department, Dublin, Ireland, 3 Lancaster 


Care, Lancaster, United Kingdom 

Background: The complex nature of palliative care 

practice challenges researchers to seek alternative 

methodological approaches to capture the multiple 

“emic” perspectives inherent in those receiving 

palliative care and their families. Researching respite 

in children’s palliative care is one such challenge. 

Case study is “an empirical inquiry that investigates a 

contemporary phenomenon in depth and within its 

real life context, especially where the boundaries 

between phenomenon and context are not clearly 

evident” 1 . Case study methodology can be used in 


context dependent complex situations where 

multiple perspectives exist, and where other research 

methods are difficult to use. 

Aim: This presentation will focus on methodological 

challenges of conducting research with parents of 

children with life-limiting conditions. It aims to 

demonstrate how the use of case study methodology 

can help overcome challenges in palliative care 

research. 

Findings: Case study is rigorous and yet flexible, 

using a theoretical framework to guide data collection 

and analysis. It incorporates multiple differing 

perspectives (parents, healthcare professionals etc.) 

capturing both processes and outcomes. Study design 

is dynamic continuing throughout the research 

process. Data collected longitudinally with repeated 

contacts with the family enables changes to be 

tracked throughout the disease trajectory. Multiple 

data sources are incorporated including both 

quantitative and qualitative methods. The use of 

multiple case studies enhances credibility of findings. 

Conclusion: Although there are some limitations to 

using case study methodology (e.g. poor basis for 

generalisation; whether cases are representative), case 

study is ideal for answering some sensitive palliative 

care research questions including the respite needs 

and experiences of families caring for a child with a 

life-limiting condition. 

1.Yin (2009) Case study research. Design and 

methods. 4th Edition: Sage Publications, California 



Palliative Care Research in an Academic 

Center of Palliative Care in Portugal 

Barbosa A. 1 



The aim of our study is to review the main research 

areas developed by our academic center on palliative 

care in Portugal. We found the following main 

domains: needs assessment, instrument validation, 

symptom assessment, quality of life, prognostication, 

caregivers experience and attitudes, communication, 

existential and ethical problems. 

We critically discuss some difficulties in developing 

research in palliative care: health professionals more 

care than research prone, few palliative care hospital 

departments and community centers, limited number 

of beds from academic centers, ethical and practical 

issues on studying persons near death, few validated 

instruments for Portuguese population and lack of 

financial support. 

In our academic center of palliative care 57 master 

theses were discussed in the last five years using the 

following methodological modalities: quantitative 

(27); qualitative (26); triangulation research (2) and 

systematic research (2). 

We concluded that the main challenges for palliative 

care research to our center are: 

presentation/publication research findings, enlarging 

research areas, increasing coordination of different 

centers and integrating international surveys. 




Quantity, Quality and Scope of Palliative 

Oncology Literature 

Hui D. 1 , Parsons H.A. 1 , Damani S. 1 , Fulton S. 1 , Liu J. 1 , 

Evans A. 1 , De la Cruz M. 1 , Bruera E. 1 

1MD Anderson Cancer Center, Houston, TX, United 

States 

Research aims: The current state of palliative 

oncology literature is unclear. We examined and 

compared the quantity, research design, and research 

topics of palliative oncology publications in the first 6 

months of 2004 and 2009. 

Methods: We systematically searched MEDLINE, 

PsychInfo, EMBASE, ISI Web of Science, and CINAHL 

for original studies, review articles and systematic 

reviews related to “palliative care” and “cancer” 

during the first 6 months of 2004 and 2009. Two 

physicians reviewed the literature independently and 

coded the study characteristics with high inter-rater 

reliability. We summarized the publication 

characteristics using frequencies and percentages, and 

compared them using the Chi-Square test. 

Results: 535/54738 (0.98%) oncology publications 

in 2004 and 678/79502 (0.85%) in 2009 were related 

to palliative care (P=0.02). Combining the two time 

periods, a large majority of the palliative oncology 

155 


(Thursday)


(Thursday) 


literature was from North America (N=493, 41%) and 

Europe (N=477, 39%). Developing countries 

accounted for 38/1213 (3%) studies. The most 

common topics were physical symptoms (N=612, 

51%), health services research (N=156, 13%) and 

psychosocial issues (N=114, 9%). Communication, 

decision making, spirituality, education, and research 

methodologies each represented < 5% of the 

literature. The most common original study designs 

were case report/series (N=429, 51%), cross sectional 

(N=91, 11%) and qualitative studies (N=95, 11%). 

Randomized controlled trials comprised of 6% (N=47) 

of all original studies. Comparing between 2004 and 

2009, we found an increase in the proportion of 

original studies among all palliative oncology 

publications (N=344, 64% vs. N=504, 74%, P< 0.0001) 

but no significant difference in study design or 

research topic. 

Conclusions: We identified significant deficiencies 

in the quantity, quality and scope of the palliative 

oncology literature. Further effort and resources are 

necessary to improve the evidence base for this 

important field. 



How Good Is Palliative Care at Following the 

MRC New Guidance Developing and 

Evaluating Complex Interventions (MRC 

GDECI)? 

Evans C.J. 1 , Higginson I.H. 1 , Todd C. 1 , Hotopf M. 1 , 

McCrone P. 1 , Morgan M. 1 , Harding R. 1 , Grande G. 1 , 

Murray S. 1 , Lewis P. 1 , Payers P. 1 , MORECare Project 

1 King’s College London, Department Palliative Care, 

Policy and Rehabilitation, London, United Kingdom 

Aims: 

To review the implementation of effectiveness 

research methods in evaluations on models of service 

delivery in palliative care 

To identify ‘best practice’ and uncertain or 

contentions areas that require further methodological 

debate 

Study design and methods: The review used 

narrative synthesis as a method to systematically 

search for, map and synthesise findings on the 

implementation of effectiveness methods in 

evaluations on complex interventions in palliative 

care. We included systematic reviews on the 

effectiveness of specialist/generalist palliative care 

services for patients and/or their families with 

advanced progressive malignant or non-malignant 

disease, and methodological reviews on effectiveness 

methods in palliative care. The MRC GDECI informed 

the analysis framework. A quality assessment of 

included reviews examined the robustness of the 

synthesis. The synthesis compared and contrasted 

across the reviews the methodological challenges and 

solutions to implementing effectiveness methods, 

and examined best practice and areas of 

uncertainty/contention. 

Results: The synthesis included 35 systematic 

reviews on the effectiveness of service delivery models 

in palliative care, and a review on effectiveness 

methodology in palliative care. There is disparity in 

the implementation of the MRC GDECI in 

effectiveness evaluations on models of service delivery 

in palliative care. Methodological areas of evaluating 

effectiveness have received greater debate (e.g. 

outcome measurement, randomisation), while 

developing an intervention (e.g. theoretical base, 

modelling causal link) has received less attention, 

moreover best practice to implement evidence and 

influence service delivery is little discussed. 

Conclusion: The findings develop the MRC GDECI 

specifically for effectiveness research in palliative care 

(e.g. user involvement and process of consent with 

impaired capacity), and identify uncertain areas 

requiring methodological debate (e.g. evaluation 

timeliness). 



Title: Reflexology in Cancer Patients with 

Pain in Palliative Care 

Molinaro M. 1 , Fernandes P. 1 , Ishikawa N. 1 


Brazil 

The concept of Total Pain is a syndrome associated 

with physical, social, psychological and spiritual as 

factors. Reflexology is the physical act of applying 

pressure to the feet and hand with specific thumb or 

finger techniques, based on a system of zones and 

reflex areas that reflect an image of the body on the 

feet and hands with a premise that such work effects a 

physical change to the body. 

The aim of this study is to evaluate the effect of 

reflexology in cancer patients with pain in palliative 


Method: This study is a randomized control trial, 

approved by Ethics Committee and Research , 

Protocol 82/09, with adult cancer inpatients of 

National Cancer Institute of Brazil, at Paliative Care 

Unit. The criteria of inclusion were: Visual Analogue 

Scale (VAS) between 4 and 7 in order to classify the 

pain, the Karnofsky Performance Scale (KPS) more 

than 40%, which allows patients to be classified as to 

their functional impairment. The intervention group 

received reflexology and the group control received 

superficial touch, both on the foot. The Altman´s 

randomized schedule was used. 

Result: 40 patients have been attended, 20 patients 

belong to the Reflexology Group and 20 belong to the 

Superficial Touch. The mean of age was 53 years. The 

majority patients were female. The Karnofsky 

Performance Status: 20 patients had 40%, 16 had 50% 

and 4 patients had 60% of KPS. The location more 

usual of pain reported was reported in head and spine. 

The mean of pain before the Reflexology intervention 

was VAS 7.34, and after the Reflexology intervention 

was VAS 3,23. 

Conclusion: It was noticed that Reflexology is 

efficient in the pain control, and patients reported 

another benefits, like: reduction of nausea and 

anxiety and feel safe and calm. This research is not 

finish yet, and we are working on that. 



Development and Beneficial Outcomes of the 

International Collaborative OPCARE9: 

International Young Researchers Going Hand 

in Hand 

Raijmakers N. 1,2 , Bragg C. 3 , Domeisen F. 4 , Galsuhko M. 5 , 

Jorge M. 6 , Lindqvist O. 7,8,9 , Lundh Hagelin C. 10,11 , Popa 

Velea O. 12 , Schüler S. 4 , on behalf of OPCARE9 

1 Erasmus MC, Department of Public Health, 

Rotterdam, Netherlands, 2 Erasmus MC, University 

Medical Center Rotterdam, Department of Medical 

Oncology, Rotterdam, Netherlands, 3 Marie Curie 

Palliative Care Institute, Liverpool, United Kingdom, 

4 Cantonal Hospital St.Gallen, Centre of Palliative 

Care, St Gallen, Switzerland, 5 University Hosptial 

Cologne, Department of Palliative Medicine, 

Cologne, Germany, 6 Pallium Latinoamérica, Buenos 

Aires, Argentina, 7 Stockholms Sjukhem, Research & 




Medical Management Center, Stockholm, Sweden, 

9 University of Umeå, Department of Nursing, Umea, 

Sweden, 10 Sophiahemmet, University College 

Stockholm, Stockholm, Sweden, 11 Karolinska 


Stockholm, Sweden, 12 University Hospital Cologne, 

Department of Palliative Medicine, Cologne, 

Germany 

Introduction: OPCARE9 is a 3 year EU 7 th 

framework project that was launched in March 2008. 

The aim for the 9 participating countries is to optimise 

research and clinical care for cancer patients in the 

last days of life. Early in the project, it became evident 

that, besides the Project Steering Group(PSG), an 

interconnection on the operational level was helpful. 

For this reason, a group of young researchers from the 

5 primary work packages was established in October 

2008; the Scientific Project Assistants Group(SPAG). 

The objectives of SPAG were to consolidate and 

standardize research methodologies throughout the 

project, support and learn from each other, be a 

channel for fast and easy contact and to avoid 

duplication of work. The purpose is to describe what 

can be learned form the development process of 

SPAG. 

Development: At this moment SPAG consists of 3 

senior lecturers and 6 junior researchers with different 

levels of experience and professions (social scientist, 

physician, nurse and social worker). Besides the inperson 

meetings, every six months in OPCARE9, 

additional communication tools used are e-mail, a 

dedicated web-based forum for sharing documents 

and discussions, and web meetings (26 to date). 

Topics discussed were methodologies and progress 

across the collaborative, collaboration on quality 

indicators and communication with PSG. 

Also, to ensure the connection between management 

and the operational level, one SPAG member is 

serving 6 months as representative in the PSG. 

Outcomes: During 24 months of existence, a certain 

legitimacy of SPAG has been accomplished. SPAG 

resulted in an active, international collaborative 

network of young researchers, with the ambition to 

collaborate on future projects and to keep interacting 

after the end of OPCARE9. Clearly, the development 

of this structure has been an ongoing creative and 

inspiring learning process. Thus, every extensive 

collaborative should consider to empower their 

younger researchers in such way. 



Muscle Fatigue Changes Biceps brachii Muscle 

Twitch Force Properties in Healthy Controls 

but Not in Cancer Related Fatigue 

Davis M. 1 , Kisiel-Sajewicz K. 1 , Yue G. 1 , Seyidova- 

Khoshknabi D. 1 , Walsh D. 1 

1 Cleveland Clinic, Cleveland, OH, United States 

Introduction: Patients with cancer-related fatigue 

(CRF) experience greater central nervous system 

fatigue (compared to healthy controls) during a 

prolonged voluntary motor task (Yavuzsen et al. J Pain 

Symptom Manag, 38:587-96, 2009). Based on this 

finding, we hypothesized that CRF patients would 

endure less muscle fatigue indicated by fewer changes 

in twitch force properties of muscle after voluntary 

muscle fatigue. 

Method: Ten patients with advanced solid cancer 

and significant CRF and 12 age- matched healthy 

controls performed a sustained isometric elbow 

flexion contraction of the right arm at 30% maximal 

level (S30) until self-perceived exhaustion. The biceps 

brachii (BB) muscle was stimulated by applying single 

maximal-intensity electrical pulses onto skin surface 

overlying the muscle and the evoked twitch force (TF) 

was measured by a force transducer before and 

immediately after S30. Peak TF, rate of TF 

development, contraction time (CT, from initiation 

to peak of TF), and half relaxation time (HRT, from 

peak to 50% peak TF) were quantified. 

Results: Peak TF, CT, and HRT decreased 

significantly (P< 0.05) in healthy controls but these 

parameters remained the same after vs. before S30. 

Discussion: Because no voluntary muscle activation 

was involved with the electrical stimulation-evoked 

muscle contraction, the measured TF parameters were 

pure muscle responses and their changes after S30 

reflect effects of muscle fatigue. Minimal reductions in 

peak TF, CT and HRT in CRF patients suggest 

insignificant muscle fatigue in these individuals. 

Conclusion: Task failure in CRF patients is caused 

more by central fatigue and less by muscle fatigue. 



Exercise Training in Palliative Patients with 

Advanced Cancer. A Non Randomized Open 

Pilot Study in Palliative Care: Investigating 

the Effect and Feasibility of an Exercise 

Program for Palliative Patients with Cancer 

Verhagen C.A.H.V.M. 1 , van den Dungen I. 2 , Vissers 

K.C.P. 1 

1 Nijmegen University Medical Centre, Department of 

Anesthesiology, Nijmegen, Netherlands, 2 Nijmegen 

University Medical Centre, Nijmegen, Netherlands 

Background: Physical condition is the most 

important parameter of Quality Of Life (QOL) in 

patients with advanced cancer (PAC). Exercise 

programs have proven positive effects on physical and 

QOL parameters in cured cancer patients. Exercise in 

PAC has received little attention in palliative care 

research. In clinic there is a preserved policy in 

prescribing exercise in this vulnerable group. 

Research aim: To investigate the feasibility of an 

exercise program in PAC, to explore effectiveness on 

physical and QOL outcomes, as well as (physical) 

limitations during the exercise program. 

Study design and methods: A non randomized 

open pilot study. All patients attending the outpatient 

clinic of an academic hospital during the inclusion 

period (March to April 2010) without curative 

options, willing to participate in exercise pilot and 

able to walk 6 minutes were included. The program 

consisted of graded exercise adapted to individual 

limitations of the patients, comprising resistance and 

aerobic exercise, 2 weekly during 6 weeks. Outcome 

measures were feasibility outcomes, muscle strength, 

aerobic functional fitness, QOL, fatigue, physical 

functioning, social functioning, mood status and pain 


y validated tools. 

Results: 26 PAC participated, during the training 

period 9 participants dropped out because of early 

progression. After 6 weeks muscle strength and 

aerobic functional fitness increased significant (P < 

0.05). Body composition improved by a significant 

decrease in fat percentage. Quality Of Life increased 

significantly, as the social functioning, physical role 

functioning, activity level and vitality. Feasibility 

outcome measures showed positive results. 

Conclusion: Physical exercise seems to be a feasible 

way to improve physical condition and QOL even in 

palliative patients. Despite a high drop-out rate of 

35% due to disease progression statistics on intention 

to treat remained positive. Future RCT´s are needed to 

confirm the results. 



Deep Palliative Sedation in Hospice and Home 

Care: A Multicenter Prospective Italian Study* 

Zucco F.M. 1 , Sardo V. 1 , Guardamagna V.A. 1,2 , Piovesan 

C. 1 , Moroni L. 2 





Research aims: Analysis of Deep Palliative Sedation 

(DPS) in Italian Palliative Care pts. 

Study design and methods: Prospective (same 15 

days enrollment period), multicenter (46 Italian 

Palliative Care Units), observational study. Data 

collection period/patient: 5 weeks/Hospice pts (max 

T5 in HO); 9 weeks/Home care pts (max T9 in HOCA) 

or until death (“Exitus” pts). 

Results: Patients enrolled: 397 (52% m, 48% w; 90% 

>55 years-old; 98% cancer pts), 203 (51%) in HOCA, 

188 (47.3%) in HO and 6 in other assistance settings. 

At the end of study (maxT5 in HO and maxT9 in 

HOCA) died pts were 80% in HO and 71% in HOCA. 

DPS was used in 22% of all pts enrolled (respectively: 

15,8% vs 29,3 of all pts). Among DPS cohort, 64.8% 

were sedated < 48h and 80.7% < 72 hours. DPS < 24h 

was used more in HO than in HOCA (45.5% vs 

21.9%). DPS between 24-72h was used more in HOCA 

than in HO (59.4% vs 34.5%). In 10.2% of cases pts 

were deeply sedated for ≥3 and ≤7 days; 4.5% of pts for 

≥8 and ≤10 days (6.3% in HOCA vs 3.6% in HO). A 

specific method for assessing and monitoring the 

sedation level was used in 22% of HOCA pts and 33% 

of HO pts. Analysing the specific Questionnaire 

Section, in the last 24h of life, pts were sedated in 

28.2% (20.7% vs 36.7%). Drugs most commonly used 

In deeply sedated pts were: Midazolam-MDZ: 81.3% 

in HOCA vs 81.8% in HO; Strong Opioids (87.5% vs 

30.9%); Major Neuroleptics: 43.8% vs 9.1%; other 

Benzoiazepines: 12.5% vs 18.2%; Barbiturates: 3.1% 

vs 1.8%; other drugs were used in 28.1% in HOCA vs 

in 9.1% in HO. 

Conclusion: Among all pts enrolled 22% were 

treated with DPS, at lower value referring to specific 

literature. In the last 24h of life the % increases up to 

28.2% in died pts. Midazolam was the main drug used 

for DPS in Italian Palliative Care network. 

*The Study was coordinated by Federazione 

Cure Palliative-FCP (www.rete-federazionecure-palliative.org), 

and granted by Ministry 

of Health (€ 400.000,00) 



Demographic Predictors of Symptom 

Prevalence in Advanced Cancer 

Aktas A. 1 , Walsh D. 1 , Rybicki L. 2 , Schleckman E. 1 







States 

Background: Knowledge of the demographic 

predictors with the strongest impact on symptom 

prevalence can facilitate symptom management. We 

aimed to identify the dominant predictor of 

symptoms from age, gender, performance status (PS), 

and primary site in advanced cancer. 

Methods: Recursive Partitioning Analysis (RPA) 

identified the dominant predictors of 38 symptoms in 

948 consecutive patients. RPA split data into two 

categories. It assessed all possible data splits for the 

four variables and selected the one that maximized 

the prevalence difference between the two categories. 

Results: Median age was 65 (range 12-94 years); 55% 

were male; 65% had ECOG PS 3-4. Most common 

cancers: lung, genitourinary, gastrointestinal. Gender 

was not a dominant predictor for any symptom. Age 

was the dominant predictor for sleep problems, 

depression, nausea, anxiety, vomiting, headache, 

tremors, blackouts. Symptom prevalence declined with 

age. PS was the dominant predictor for pain, easy 

fatigue, weakness, anorexia, lack of energy, 

constipation, early satiety, taste changes, confusion, 

memory problems, sedation, hiccough, hallucinations, 

mucositis. Various cancer primary sites were the 

dominant predictor for dry mouth, dyspnea, weight 

loss, cough, edema, hoarseness, dizziness, dyspepsia, 

dysphagia, belching, bloating, wheezing, itching, 

diarrhea. Head/neck and pancreas cancers individually 

were both dominant predictors for dysphagia and 

belching, respectively. Only 2 symptoms (aches/pains, 

dreams) had no dominant predictor. 

Conclusions: 36 symptoms had a dominant 

demographic predictor. Age was the dominant 

predictor for 8; the influence was unidirectional. 

Gender did not predict any symptom. PS was the 

dominant predictor for 14 symptoms; the influence 

was bidirectional. Head/neck and pancreas cancers 

had clinically and statistically significant influence 

over symptom prevalence. Symptom profiles based 

on dominant demographic predictors may be present 

in advanced cancer. 



It´s More than CYP! Drug Interactions in 


Gaertner J. 1,2,3 , Ruberg K. 4,5 , Schlesiger G. 1 , Voltz R. 1,2,3 


Palliative Medicine, Cologne, Germany, 2 Center for 

Integrated Oncology Cologne Bonn, Department of 

Palliative Medicine, Cologne, Germany, 3 University 

Hospital of Cologne, Clinical Trials Center Cologne 

(BMBF 01KN0706), Cologne, Germany, 4 Kronen 

Pharmacy, Hospital and Community Pharmacy, 

Wesseling, Germany, 5 Working Group Pharmacists of 

the German Association of Palliative Care, Berlin, 

Germany 

Introduction: This study aims to identify 

substances with high or low risks of inducing drugdrug 

interactions (DDIs) and provide practical 


Material and methods: Retrospective systematic 

chart analysis of 200 consecutive inpatients. ORCA 

(OpeRational ClAssification of Drug Interactions), the 

recently developed and internationally advocated 

classification system was applied using the national 

database of the Federal Union of German Associations of 

Pharmacists (ABDA). 

Results: In 151 patients (75%), potential DDIs were 

identified. In these 151 cases 631 theoretically 

possible DDIs were reported. Relatively safe were 

lorazepam, opiods (not: methadone), non-opioids 

(not: NSAIDS), protone-pump-inhibitors, metamizole 

(dipyrone), laxatives, benzodiazepines, pregabaline 

and butylscopolamine. Substances with a high 

potential for DDIs included scopolamine, 

neuroleptics, dopamine antagonists, antihistaminics, 

NSAIDs, (Levo-) methadone, amitriptyline, 

carbamazepine and diuretics, furosemide. 

Discussion: Opioids (not: methadone), non-opioids 

(not: NSAIDS) and ko-analgesics (exept 

carbamazepine) were generally safe. Most relevant 

DDIs were associated to affects at histamine, 

acetylcholine and dopamine receptors as well as due 

to NSAID. Even in the last hours of life substances (e.g. 

anticholinergics) may produce relevant DDIs (e.g. 

agitation/delirium) that can not be monitored due to 

the patients limited ability to communicate. Since 

other substances that were not used in our patient 

population have previously been identified to be 

relevant for DDIs in other countries (e.g. phenytoin, 

vitamin k antagonists, tramadol), these were included 

with a specific remark in the practice guideline 

(red/green and ghost flags) provide in this article. 

Conclusion: In the palliative care context DDIs can 

be limited if a few facts are considered. Therefore, a 

concise synopsis of this publication is presented as a 

“flag” system and “road map”. 




Prevalence and Clinical Relevance of 

Mucocutaneous Fungal Colonization in 

Palliative Care and other Vulnerable Patient 

Populations - Preliminary Results of a 

Prospective Multifacility Survey 

Alt-Epping B. 1 , Wojak K.P. 1 , Ungermann G. 1 , Bader O. 2 , 

Jung K. 3 , Gross U. 2 , Nauck F. 1 

1 University Medical Center Göttingen, Dept. of 

Palliative Medicine, Goettingen, Germany, 

2 University Medical Center Göttingen, Institute for 

Medical Microbiology, Göttingen, Germany, 

3 University Medical Center Göttingen, Dept. of 

Medical Statistics, Goettingen, Germany 

Introduction: In a previous pilot study with 

palliative care patients we found a correlation 

between enoral symptoms like dry mouth or taste 

disturbances and enoral candidiasis, independent 

from radio- or chemotherapy related mucositis. We 

therefore hypothesized that mucocutaneous fungal 

colonization might play a role in miscellaneous 

vulnerable patient populations in terms of clinical 

relevance and symptom burden. 

Method: Five different facilities were addressed: a 

palliative care unit, an intensive care unit, a geriatric 

ward, a nursing home for the elderly, and a nursing 

home for demented patients. A control group 

consisted of 50 healthy students. We collected swab 

samples from the oral cavity, the inguinal fold and the 

interdigital area of the feet for microbiological 

analysis, reviewed clinical charts, and performed 

semiquantitative interviews and a clinical 

examination (dentistry expertise at hand). 

Results: The overall prevalence of enoral fungal 

colonization in palliative care patients (77%), 

intensive care patients (76%), geriatric patients (80%) 

and nursing home residents (83% and 86%) was 

found to be twice the prevalence than in the control 

group (38%; preliminary data). Neither the use of 

dental prostheses, nor the ability for independent 

mouth care or the use of antibiotics contributed to 

fungal colonization. Xerostomia was a leading 

symptom in palliative care (66%) but also in geriatric 

patients (45%). No differences of interdigital or 

inguinal fungal colonization were detected between 

the study groups and the control group, although dry 

skin was reported by patients and residents in 42%. 

Discussion: Mucocutaneous fungal colonization 

and infection is an epidemiologically, 

microbiologically and clinically relevant problem in 

different vulnerable patient populations. Implications 

for symptom control and individual quality of life, 

oral hygiene standards, or local or systemic empirical 

medical treatment might be manifold and are subject 

to further study. 


Withdrawn 




The Quality of Sleep in a Sample of Palliative 

Patients and its Relationship with the Main 

Symptoms 

Carralero García P. 1 , Deblas Sandoval A. 1 , Jurado Martín 

M.A. 1 , Hoyos Miranda F.R. 1 

1 Fundación CUDECA, Arroyo de la Miel - 

Benalmadena Costa, Spain 

Aims: Studying the quality of sleep with a sample of 

palliative patients who were visited by our medical 

teams. 

Assessing whether there would be some relationship 

between the most common symptoms and a poor 

sleep quality. 

Methods: Descriptive study from June to September 

2010.We included all those patients who were in our 

palliative care program and didn´t have any exclusion 

criteria: 

Age below 16 years. 

Cognitive failure and/or delirium. 

Inability to communicate effectively. 

Psychotic illness. 

We used the Pittsburgh Sleep Quality Index (PSQI) to 

study sleep quality,whereas we used the Edmonton 

Symptom Assessment System (ESAS) to assess the 

most common symptoms. 

Basic descriptive statistics were computed for the 

sociodemographic variables, the different 

components of PSQI and the ESAS. We calculated the 

157 


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biserial correlation coefficient (r pb ) between the 

variable “good and poor sleeper” (result of the PSQI) 

and all variables of the ESAS. Also we did a logistic 

regression between those variables with more 

correlation. 

Results: The sample consisted of 80 patients, 65% 

were male, the mean age was 70,41(±13,7) years, and a 

mean PPS 60,38%(±15,8). 

In our sample, the average total score on PSQI was 

9,5(±4,5), so the PSQI classified the 77,5% of the 

patients as “poor sleepers”. 

There were statistically significant correlations 

(pń0,01) between “good-poor sleeper” and pain 

(r pb =0,308), depression (r pb =0,317), drowsiness 

(r pb =0,295) and well-being (r pb =-0,24; pń0,05). 

After the logistic regression, only pain and drowsiness 

were statistically significant (pń0,05) with a Odds 

Ratio=1,425 for pain, and OR=1,314 for drowsiness. 

Conclusions: The prevalence of the bad quality sleep 

was similar to others studies in palliative care. 

Although it appears that there was relationship 

between some symptoms and “poor sleepers”, it’s true 

that the strength of association was weak. 

It’s necessary to do more research with bigger samples 

and with more balanced groups in sleep quality. 



“How Do You Feel With Psychostimulants?”. 

A Qualitative Prospective Study on the 

Patients’ Experiences with Modafinil or 

Methylphenidate 

Centeno C. 1 , Portela M.A. 1 , Arantzamendi M. 2 , Urdiroz J. 1 , 

Martínez M. 1 

1 Unidad de Medicina Paliativa, Clínica Universidad de 

Navarra, Pamplona, Spain, 2 School of Nursing, 

Universidad de Navarra, Pamplona, Spain 

Background: Psychostimulants in palliative care are 

controversial. Asthenia, depression and hypoactive 

delirium are some indications. In despite the recent 

studies including some randomized trials, definitive 

evidence is not available. It is possible that the 

patients experience with psychostimulants would be 

not well understood and the effect of these drugs 

could be out of the categories previously considered. 

Aim: To address the patients experience with 

metylphenidate and modafinil we have conducted an 

observational study. 

Method: Advanced cancer patients, receiving 

methylphenidate or modafinil for symptom control, 

and main caregivers of them, were interviewed with a 

semi-structured interview after to administrate the 

first doses of the drug (between day 1 and day 5). The 

first open questions were “do you feel any change in 

your symptoms or your general status in relation with 

the new medicine introduced?” “How do you feel 

right now?” “What it is different after?” Indication, 

doses and main characteristic of the patients and the 

disease were collected. The interviewed were written 

in the moment with quick notes and transcribed 

immediately in a chart. Content analysis will be 

carried out (following Burnard, 1991 steps) by 

external expert in qualitative analysis with researchers 

participation. 

Results: Until the date we have included 9 patients 

with asthenia, depression and one with ‘chemobrain’. 

Preliminary findings show the main domains 

influenced by psychoestimulants are vitality (“activity 

is unbelieveable now”), clear thinking, and 

cheerfulness (“yesterday I was the sadness, today I am 

other”). Effect off-on is described for several patients 

(“I have come back”, “I have new batteries, “it is 

magic coctktail””). The study is still open until to 

recruit 20 patients before the congress. Final results 

will be shown. 

Founding: University of Navarra. 



The Relationship between Symptom 

Prevalence and Severity and Cancer Primary 

Cancer Site in 796 Patients with Advanced 

Cancer 

Kirkova J. 1 , Walsh D. 1 , Aktas A. 1 , Rybicki L. 2 , Davis M.P. 1 , 








States 

Background: Knowledge of differences in symptom 

prevalence and severity between cancer primary sites 

may help understand symptom pathophysiology. We 

examined the relationship between cancer primary 

sites, symptom prevalence & severity. 

Methods: We retrospectively analyzed 38 symptoms 

in 796 consecutive advanced cancer patients. Because 

of small patient numbers for certain primary sites, we 

empirically formed 12 primary site groups (PSGs). 

Symptom prevalence & severity (mild, moderate, 

severe) were compared among 12 PSGs using Chisquare 

test. Pairwise comparisons were done to 

determine which sites differed. A p-value of < 0.05 

indicated statistically significant differences between 

at least 2 of the 12 PSGs. 

Results: Pain, fatigue, weakness, lack of energy & 

anorexia had the highest overall prevalence & did not 

differ among PSGs. The 3 most common 

neuropsychological symptoms (insomnia, 

depression, anxiety) did not vary among PSGs. 19 of 

the 38 symptoms (50%) varied significantly between 

PSGs, in either prevalence, severity, or both. 17 (45% 

of total) symptoms (belching, bloating, confusion, 

cough, dyspnea, diarrhea, dyspepsia, dysphagia, early 

satiety, edema, hiccough, nausea, pruritus, sedation, 

>10% weight loss, wheezing, vomiting) differed in 

prevalence. 14 (bloating, cough, dyspnea, dyspepsia, 

dysphagia, early satiety, edema, headache, 

hoarseness, nausea, pruritus, sedation, >10% weight 

loss, vomiting) of the 19 symptoms differed by 

severity. 12 of these varied by PSG in both prevalence 

& severity, half were gastrointestinal symptoms. 

Conclusions: Half of the 38 symptoms assessed 

varied by PSG in either prevalence, severity or both. 

Symptoms which varied by PSGs should be screened 

as markers of disease progression & included in cancer 

site-specific symptom assessment tools. The other 19 

symptoms that did not vary by PSG should also be 

evaluated in routine clinical practice to provide a 

comprehensive symptom assessment regardless of 

cancer primary site. 



The Impact of Breathlessness in Patients with 

Intrathoracic Malignancy - A Qualitative 

Study 

Wood H. 1 , Connors S. 2 , Dogan S. 1 , Peel T. 2 

1 North Tyneside General Hospital, Clinical 

Psychology, Tyne & Wear, United Kingdom, 2 North 

Tyneside General Hospital, Palliative Medicine, Tyne 

& Wear, United Kingdom 

Background: Lung cancer and mesothelioma are 

commonly associated with dyspnoea. Nonpharmacological 

breathlessness management 

programmes have been available in this trust for a 

number of years. We report the personal experiences 

of 9 patients with cancer and dyspnoea, before the 

intervention. 

Methods: All patients completing the programme in 

Northumbria were offered participation in the study. 

Each had completed primary oncological treatment 

for intrathoracic malignancy (lung cancer or 

mesothelioma). Participants completed in depth 

semi-structured interviews, which were analysed by 

interpretative phenomenological analysis (IPA). 

Interviews were continued until a saturation of 

themes was achieved. 

Results: 9 interviews were completed. 

In terms of individual experiences of the condition, its 

consequences and the breathlessness experience, 4 

major themes were identified. These are summarised as: 

i) The lung cancer journey 

This included coping with symptoms and treatment 

side effects, the psychological impact of the diagnosis, 

the illness course as a learning process, uncertainty 

and life adjustment. 

ii) The impact of the individual personality on the 

experience of dyspnoea and innate coping strategies. 

iii) The breathlessness experience 

Change, fluctuation, decline. Physical and emotional 

experiences. 

iv) Consequences of breathlessness 

These include social and functional impact, loss of 

independence and the response to a changing self. 

Conclusion: Patients with intrathoracic malignancy 

and dyspnoea experience significant changes in 

physical and emotional feelings that need addressing 

on an individual basis. 



Implementation of the Victoria Bowel 

Performance Scale 

Hawley P.H. 1,2 , Barwich D. 3 , Kirk L. 4 

1 BC Cancer Agency, Palliative Care, Vancouver, BC, 

Canada, 2 University of British Columbia, Division of 

Palliative Care, Vancouver, BC, Canada, 3 Fraser 

Health Authority, Hospice Palliative Care, Burnaby, 

BC, Canada, 4 Fraser Health Authority, Nursing, 

Surrey, BC, Canada 

Context: Lack of evidence to guide constipation 

management in Palliative Care. 

Objective: To assess the usefulness of Victoria Bowel 

Performance Scale (BPS). 

Methods: Chart reviews before and after the 

implementation of the BPS at 12 sites; 3 oncology 

pain and symptom management/palliative care 

(PSMPC) clinics, 4 palliative care units (PCUs), and 4 

residential hospices. One control PCU introduced 

new nursing assessment tools without the BPS. 

Results: The BPS was recorded at 86% of 192 postimplementation 

PSMPC clinic visits and was easy to 

use in this setting. Documentation of bowel 

performance in comparable visits improved from 44% 

to 66% and the frequency of changes to laxatives 

increased from 14% to 39% of visits (p< 0.001) . The 

BPS was considerably more difficult to implement in 

the residential sites but revealed important 

deficiencies and led to change in management. 

Conclusions: The BPS was found to be an acceptable 

and useful bowel function assessment tool, and 

improved the quality of constipation management. 

Modifications have since been made to the BPS to allow 

for the expected drop in bowel activity seen in end of 

life care, and for clarity. For optimal implementation 

considerable educational effort and appropriate 

organization of the charts are required. Duplicate 

charting should be minimized, and the rBPS score 

should be clearly linked to the laxative protocol(s) in 

use. The proportion of BPS scores ranging from -1 to +1 

is proposed as an indicator of satisfactory bowel 

management for both clinical and research purposes. 



Cut-off Points for Cancer-related Fatigue. 

Where Do We Stand? 

de Raaf J. 1,2 , de Klerk C. 2 , van der Rijt C.C.D. 1 


Netherlands, 2 Erasmus MC, Medical Psychology and 

Psychotherapy, Rotterdam, Netherlands 

Aim: Patients are usually screened for cancer-related 

fatigue (CRF) using a 0-10 numeric rating scale. For 

both research and clinical practice, cut-off points 

(CPs) are required to determine which scores 

represent clinically relevant CRF. Based on consensus, 

a score ≥4, e.g. CP4, is usually considered to indicate 

moderate to severe CRF. In this review we explore the 

available evidence about CPs for CRF. 

Methods: We performed a PubMed-search with 

(“neoplasms” [Mesh] or cancer) and (cut OR cut-off 

OR cutpoint OR fatigue severity) and (fatigue OR NRS 

OR BFI OR ESAS), limited to original studies, English 

articles and adults. 

Results: We found 10 articles about CPs for CRF. The 

studies included cancer patients in various disease 

stages. All studies used a reference questionnaire to 

calculate a CP: either an interference questionnaire 

(n=7) or a fatigue questionnaire (n=3). Reported CPs 

varied CP2-CP6, with five studies reporting CP4. Four 

studies used rating scales asking for worst fatigue 

(CP4-CP5), two for usual fatigue (CP3-CP4), three for 

fatigue (CP2-CP5) and one for tiredness (CP6). Recall 

period ranged from “right now” up to “last three 

days”. Studies determining interference-based CPs 

reported lower CPs than studies using other fatigue 

questionnaires as a reference (CP2-CP4 vs. CP3-CP6). 

Conclusion: From the literature, there is some 

evidence to use CP4 for determining clinically 

relevant CRF. However, as the reviewed studies were 

very heterogeneous, there are still some points of 

uncertainty that need to be resolved. First of all we 

should reach consensus about the most relevant 

aspect of CRF (e.g. usual fatigue, worst fatigue or 

current fatigue) and the ideal recall period. 

Furthermore, taking response shift into account, it 

should be investigated if the CP is the same in various 

stages of cancer. Finally, because we lack a golden 

standard for fatigue, we should decide if we prefer 

interference-based CPs or CPs determined using other 

well-validated questionnaires. 




Pharmacological Management of Anorexia: A 

Randomised Double Blind Multi-site Placebo 

Controlled Parallel Arm Trial of Megestrol 

Acetate and Dexamethasone in People with 

Advanced Cancer 

Currow D.C. 1 , Martin P. 2 , Abernethy A. 3 , Bauer J. 4 , 

Tattersall M. 5 , Bochner F. 6 , Jatoi A. 7 , Eckermann S. 8 , Glare 

P. 9 , Shelby-James T. 1 


Supportive Services, Daw Park, Australia, 2 Barwon 

Health, Palliative Care, Geelong, Australia, 3 Duke 

University Medical Center, Durham, NC, United 

States, 4 Wesley Research Institute, Auchenflower, 

Australia, 5 University of Sydney, Dept of Medicine, 

Sydney, Australia, 6 University of Adelaide, 

Pharmacology, Adelaide, Australia, 7 Mayo Clinic, 

Rochester, MN, United States, 8 University of 

Wollongong, Wollongong, Australia, 9 Memorial 

Sloan-Kettering Cancer Center, New York, NY, United 

States 

Background: Anorexia is a common and distressing 

problem in people with advanced cancer and other 

life-limiting illnesses. Dexamethasone is widely used 

as an appetite stimulant, and is inexpensive. 

However, there is only low level evidence for its net 

clinical benefit and there is a lack of clinical consensus 

on optimal dose/regimen/duration in this 

population. Megestrol acetate is the other established 

treatment and there is Level 1 evidence for its efficacy 

as an orexigenic agent in advanced cancer but costeffectiveness 

has not been established. 

Despite the evidence, megestrol is not currently 

prescribed extensively as an appetite stimulant to 

Australian patients with advanced cancer, mainly due 

to its cost. The results from existing studies do not 

provide sufficient evidence of the net clinical benefit, 

relative efficacy, toxicity, or cost benefit of these two 

agents in people with advanced cancer receiving 

palliative care. Such people are likely to be sicker and 

have a shorter survival than those in the previous 

studies, and the principal aims of therapy (appetite 

stimulation and quality of life vs. weight gain and 

improved function) differ. 

Aims: The primary aim is to compare megestrol 

acetate versus placebo and dexamethasone versus 

placebo for their ability to stimulate appetite. 

Secondary aims are to compare relative consequences 

of therapy and hence net clinical benefit and net 

benefit. 

Study design: Double blind, multi-site placebo 

controlled, randomized Phase III trial of 3 arms: 

megestrol acetate 480 mg/day vs. Dexamethasone 4 

mg/d vs. placebo. People with advanced cancer 

requiring palliative care and who have poor appetite 

will be eligible to participate. A sample size of 165 

people who complete 1 week of treatment is required. 

To date, 67 people have been randomised. 



Review of Red Cell Transfusions in a Specialist 

Palliative Care Setting 

Wright C. 1 , Gale S. 1 , Trotman I. 1 , Jamal H. 1 



Introduction: Red cell transfusions are used in 

palliative care to improve symptoms. Whilst there are 

national guidelines for the use of red cell transfusions, 

there is no clear guidance to support the clinical 

judgment for transfusion in the palliative care setting. 

Red cell transfusion is not without risk and has 

resource implications. We therefore set out to review 

our practice in a specialist palliative care unit. 

Methods: Patients undergoing transfusion during a 6 

month period were identified and case notes 

reviewed. Data were sought for patient demographics, 

indications, pre-transfusion Hb, evidence of 

discussion with patients re risks and benefits, number 

of units given and response to transfusion. 

Results: There were 29 transfusion episodes in 24 

patients. All patients had advanced malignant disease. 

Case notes review of 19 patients (11 m: 8 f, mean age 

73.4 years, range 49-88) who received 23 transfusions 

(49 units) showed mean pre-transfusion Hb was 

8.3g/dL (range 6.7-10.2). Target Hb levels were not set 

and haematinics were not routinely measured. The 

anaemia was normocytic in 80% of patients. Fatigue 

(17/23) was the main trigger followed by 

dizziness/faints (5), low Hb (5), dyspnoea (3) and 

other (3). Mean number of units transfused was 2.1 

(range 1-4). Blood was administered per standard 

protocol without complications. A discussion of 

transfusion risks/benefits was recorded in 9/23 

episodes. Response to transfusion was documented in 

17/23 and symptomatic benefit was recorded in 12 

(52%). Four patients died within 14 days of 

transfusion. 

Conclusion: Our findings confirm symptomatic 

improvement in about 50% of transfusion episodes 

but it is difficult to predict who will benefit or whether 

transfusing to a target Hb will improve this. A more 

structured evaluation and documentation of anaemia 

related symptoms and response to transfusion may 

help to inform future decisions, particularly in 

patients receiving transfusions repeatedly. 



Palliative Hypofractionate Irradiation of 

Elderly Patients with Breast Cancer 

Bayo Lozano E. 1 , Dominguez Rodriguez M. 1 , Muñoz 

Carmona D.M. 1 , Fernandez Cordero M.J. 1 

1 Hospital Juan Ramón Jiménez, Radiation Oncology, 

Huelva, Spain 

Purpose: The incidence of breast cancer in elderly 

patients is increasing and frequently they are 

diagnosed at advanced stages. Because of 

comorbidity, these patients often do not receive the 

standard treatment, especially radiotherapy. 

This retrospective study was undertaken to evaluate 

early and late reactions and local control of elderly 

breast cancer patients treated with adjuvant or 

palliative once-weekly hypofractionated radiotherapy 

(RT). 

Methods and materials: From May 2002 to July 

2009, 16 elderly patients (median age 77 years) with 

breast cancer were treated with adjuvant or palliative 

hypofractionated RT. The clinical stage distribution 

was as follows: stage II after breast conservative 

surgery in 43,75% and locally advanced unresectable 

tumor in 56,25%. Oestrogen receptors were present in 

87.5%, and progesterone receptors in 81.3%. RT was 

delivered once weekly in five fractions of 7 Gy to a 

total dose of 35 Gy for patients undergoing surgery. 

Patients with inoperable tumors received seven 

fractions of 7 Gy to a total dose of 49 Gy. Adjuvant 

hormonal therapy was given in 81.3% of patients. The 

median follow-up was 48 months. 

Results: All patients had some degree of early skin 

reaction, mainly grade 1 (71,4%) in the group 

receiving 35 Gy, and grade 2 (55,6%) in the group 

receiving 49 Gy. 

There were no cases of local recurrence in patients 

treated with surgery and radiotherapy. All patients 

with locally advanced tumor showed a partial 

response with a median duration of response of 27 

months. 

Conclusions: Hypofractionated RT scheme provided 

a good long-term local control and resulted in mild 

early skin reactions. We recommend this scheme of 

treatment in patients who would have difficulties 

sustaining daily treatment because of old age or 

disabling associated disease. 



Hypothyreosis - An often and Easy to Treat Comorbidity 

in Palliative Care? 

Hahnen M.-C. 1 , Maier B.-O. 1 

1 Dr. Horst Schmidt Klinik, Wiesbaden, Germany 

Several patients throughout the last years on our 

palliative care ward were diagnosed with a 

hypothyreosis as a reason for fatigue and depressive 

symptomes. 

A substitution of l-thyroxin increased the activity 

level and psychological wellbeing of a lot of patients 

which had a manifest hypothyreosis before. The 

research aim is to show that hypothyreosis is a 

common co-morbidity in palliative care which can be 

treated easily and that tsh-screening therefore is a 

reasonable laboratory test on admission to a palliative 

care ward. 

In the first part of our study we retrospectively 

analysed in how many patients between 1/1/09 and 

09/31/10 a tsh-level was measured and how often a 

hypothyreosis was diagnosed. In the second part we 

implemented a tsh-screening to our standard 

laboratory tests on admission to our ward and 

quantitatively analysed how many patients between 

08/01/10 and 04/30/11 had a hypothyreosis and to 

what reason. 


465 patients were included into the retrospective 

study. A tsh-level was measured in 7.7% of all 

patients. More than 47% of the tested patients had a 

manifest hypothyreosis. 

In the group with routine tsh-test on admission about 

60% of our patients had a tsh-test (indication for 

labaratory test had to be given). Nearly 7% had a 

hypothyreosis due to different reasons (German 

average incidence: 2%). Treatment of hypothyreosis 

could successfully improve fatigue and depressive 

symptoms in most of these patients when indicated 

to do so. Also the careful i.v.-application of l-thyroxin 

is possible in palliative care setting. 

Hypothyreosis is a common co-morbidity in palliative 

care. It may cause fatigue and depressive symptoms 

and in most cases it can be treated non-invasive with 

low-costs and with short treatment duration. A tshscreening 

is a reasonable laboratory-test in palliative 

care setting to identify a reversible method to improve 

the patients’ quality of life. 



Cognitive Assessment of Cancer Patients in 

Palliative Care: A Systematic Review 

Kurita G.P. 1,2 , Santos J. 1 , Mattos Pimenta C.A. 1 , Pain, 

Symptom Control and Palliative Care Research Group 

CNPq 

1 University of Sao Paulo, School of Nursing, Sao 

Paulo, Brazil, 2 Rigshospitalet, Multidisciplinary Pain 

Centre and Section for Acute Pain Management and 

Palliative Medicine, Copenhagen, Denmark 

Aim: Proper cognitive assessment in palliative care 

cancer patients can improve therapeutic plan and 

research. This review aimed to identify instruments 

used for cognitive assessment in this population. 

Methods: Search based on the question “What are 

the instruments used for cognitive assessment of 

cancer patients in palliative care?” MeSH terms and 

words related to neoplasm, palliative care, cognition 

and assessment composed the search strategy 

performed on Pubmed, Cinahl, Lilacs, Embase, 

Scopus, Web of Science, Psycinfo and Cochrane in 

May 2010. Articles inclusion criteria: instruments for 

objective measurement of cognitive function, 

palliative cancer patients and published in English, 

Portuguese or Spanish. Exclusion criteria: instruments 

for anxiety/depression/mental disorders/organic 

changes, case studies and reviews. Studies were 

analyzed regarding design, instruments characteristics 

and prevalence of dysfunction. 

Results: From 468 abstracts, 24 were selected. Eight 

were controlled trials (6 randomized), 15 

observational studies and 1 validation study. Twentyone 

general and specific instruments to assess one or 

more functions were applied alone or in combination. 

The Mini-mental State Examination-MMSE (15/24), 

Trail Making Test (7/24) and the Wechsler Adult 

Intelligence Scale (4/24) were the most used. 

Seventeen tools were paper/pencil tests and 2 

computerized tests; 13 captured alterations and only 

MMSE was previously validated in cancer patients. 

The prevalence of cognitive dysfunction ranged from 

7.4% to 95% and deficits in memory and fine motor 

coordination were the most captured. 

Conclusion: A wide range of cognitive dysfunction 

prevalence was observed and memory and fine motor 

coordination were the most affected. Only one 

instrument was validated to palliative care cancer 

patients and few studies were found, which weaken 

the data. Validated instruments can provide more 

accurate cognitive assessment of cancer patients in 





The Experiences of Patients with Malignant 

Ascites 

Perkins P. 1 , Day R. 1 

1 Sue Ryder Care, Gloucestershire, United Kingdom 

Research aims: To explore cancer patients’ 

experiences of living with ascites including their 

perceived quality of life before and after treatments; 

the role of semi-permanent drains and views of 

potential research in this area. 

Study design and methods: Cancer patients with 

ascites have been / are being purposively selected 

according to their experiences of ascites management 

(diuretics, paracentesis performed in hospital ward, 

radiology, hospice, semi-permanent drains). 

Consenting patients participate in tape-recorded 

159 


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interviews aided by a topic guide. Interviews are 

transcribed and anonymised. Analysis begins with 

line by line open coding followed by further analysis 

looking for themes drawing on principles of 

phenomenology. 2 of the research team (RD & PP) 

analyse interviews separately and discuss emerging 

themes which allows small changes to the topic guide 

to investigate these themes further. 

Results: Recruitment and interviews are on-going 

and 7 patients have been interviewed so far. We 

estimate that recruitment will be complete by the end 

of January with data analysis complete by the end of 

March 2011. 

Emerging themes from preliminary analysis are: 

Quality of Life - Symptoms, self-image, psychosocial 

impact. 

Paracentesis - Views on setting, staff and the 

procedure 

Role of semi-permanent drains - convenience and 

impact on self-image 

Future research - views on whether a randomised 

controlled trial is feasible and should be done 

Conclusion: These patients are providing unique 

insights into the experiences of living with ascites. 

Knowledge from this study may allow more focussed 

discussion when planning treatments for patients. It 

may also lead to improvements in patient experience 

and help plan future research. 

Main source of funding: UK medical £10,000 

research grant 


Withdrawn 



The Effects of Rikkunshito Suppository for 

Nausea and Vomit in Cancer Patients 

Okuno S. 1 , Okada N. 1 , Suda M. 1 , Tamai Y. 1 , Yamasaki K. 1 , 

Hanada R. 1 , Kawahara R. 1 

1 Nissay Hospital, Anesthesiology, Osaka, Japan 

Background: In palliative care patients, the quality 

of life is often compromised due to adverse effects 

from chemotherapy, opioids, or tumor invasion, 

which cause symptoms such as nausea, vomiting or 

anorexia. Rikkunshito (TJ-43; Tsumura & Co., Japan), 

a traditional Japanese medicine composed of eight 

herbs, has recently garnered attention in Japan for 

ameliorating upper gastrointestinal symptoms. Over 

the past few years, TJ-43 has been reported to improve 

appetite by promoting ghrelin secretion. However, TJ- 

43 is only available in oral form, thus patients with 

ingestion distress may not be able to take the drug. We 

therefore developed a suppository form of TJ-43 with 

the approval from Nissay Hospital Ethical Review 

Board. Here we report the efficacy of this suppository 

in palliative care of cancer patients. 

Methods: Six subjects (4 females, 2 males) aged 59-78 

years with malignancies affecting the liver, uterus, 

stomach, appendix, ovary and breast participated in 

the study. Patients complained of nausea (n=3), 

vomiting (n=2), and anorexia (n=1) following 

treatment with fentanyl patch (n=3), oxycodone 

(n=1), tranadol (n=1), and antiemetics such as 

betamethasone (n=3), prochlorperazine (n=1), or 

metoclopramide (n=1). TJ-43 suppositories were given 

as an adjunct at a dose of 4.5-7.5 g/day. 

Results: Digestive symptoms were significantly 

improved in four of the six patients after beginning 

TJ-43 suppositories, but two did not show any 

changes. There were no adverse effects such as anal 

pain and bleeding. 

Conclusion: TJ-43 suppositories effectively 

improved digestive symptoms in palliative care 

patients with ingestion distress. As oral 

administration is often problematic for advanced 

cancer patients with nausea and vomiting, 

suppositories may be particularly useful in palliative 




Advanced Oncology Population Description 

Romero Cotelo J. 1 , Lopez Tapia F. 1 , Romero Rodriguez Y. 1 , 

Martin Sanchez M.A. 1 , Martin de Rosales Martinez J. 1 , 

Galvez Mateos R. 1 , Ruiz Ortiz S. 1 , Bishop Hand L. 2 , 

Catedra Herreros M.D. 1 , Cepa Nogue R. 1 , Alba R. 1 , Villen 

M. 1 

1 Hospital Virgen de las Nieves, Granada, Spain, 

2 Brandeis University, Waltham, MA, United States 

Aims: To report on a sample of 3472 cancer patients 

treated in the Palliative Care Unit from January 1997 

to May 2010. 

Material and methods: In a cross-sectional study, 

patients were assessed by interview for 30-45 min in 

the presence of a family member or primary caregiver. 

Data were collected on: demographics, diagnosis, 

intensity of pain by Visual Analogue Scale (VAS), pain 

location, psycho-emotional aspects and physical 

activity level according to ECOG (Eastern Cooperative 

Oncology Group). A proprietary database (Windows, 

Mac and Unix) for FileMaker 7 was used. SPSS 15.0 

was used for data analyses. 

Results: We studied 3472 patients with advanced 

cancer (64% male); the mean age was 71.1 years. The 

most frequent diagnosis was lung cancer (22.6%) 

followed by digestive system cancer (17.3%). ECOG 3 

was the most frequent classification (40.1%), i.e., 

limitation to basic daily life activities; 79.9% were in 

pain, with a mean VAS of 7 (severe pain). The median 

survival after admission to the Palliative Care Unit 

was 100.82 days; a son/daughter was primary 

caregiver in 48.5% of cases. Primary caregivers 

reported that 30% of patients had anxious traits, 

25.8% depressive traits and 7.5% anxious-depressive 

traits. 

Conclusion and discussion: It is important to 

deliver global care encompassing all aspects affected 

by advanced disease, including physical symptoms 

and psycho-emotional, social and spiritual situations, 

in order to achieve the highest possible quality of life 

for patients and relatives, the goal of palliative care. 



Use of Methylnaltrexone in Opioid Induced 

Bowel Dysfunction 

Ahamed A. 1 , Vora V. 1 

1 Sheffield Teaching Hospitals, Palliative Medicine, 

Sheffield, United Kingdom 

Background: Opioid induced constipation is a 

significant problem for patients on opioids for cancer 

pain.Methylnaltrexone (MNTX) is a peripheral mureceptor 

antagonist that blocks the peripheral opioid 

gastroreceptors that are responsible for opioid 

induced bowel dysfunction.MNTX does not cross the 

blood brain barrier, therefore it does not block central 

opioid receptors, thus retaining central analgesic 

properties of opioids . 

Aim and method: To establish whether MNTX is 

effective in treating opioid induced bowel 

dysfunction in cancer patients.This is a prospective 

case note review of all patients who have received 

subcutaneous MNTX in a 8month period (Nov2009- 

June 2010) at Palliative Care units and the acute 

cancer hospital in a city in the United Kingdom . A 

totals number of 19 patients with a wide range of 

malignancies underwent administration of MNTX 

during this period. The average age was 72 and 

included 9 males and 10 females. The opioids and the 

laxatives taken by the patient was recorded. There was 

also an exact record of the time of administration of 

MNTX and the time of result of bowel action.The dose 

of MNTX used was 8mg subcutaneously for patients 

below 61 kg and 12 mg for patients above 61kg. 

Results: A total of 26 administrations of MNTX 

during the period from Nov 2009 to June 2010 of 

which 6 were excluded from the audit due to lack of 

record of time of effect. Of the 20 that were included, 

there were 14 successful bowel actions (70%) within 

four hours of administration of the drug (range 20- 

240 minutes).One person experienced stinging 

sensation from the subcutaneous administration. No 

other adverse effects were reported. 

Conclusions: MNTX is an effective treatment in the 

management of opioid induced bowel dysfunction 

where conventional laxatives have failed.It is well 

tolerated and has minimal adverse effects.It can be 

administered in the community and can thus avoid 

unnecessary hospital admissions. 



Taste Changes amongst Hospice Patients with 


Mahmoud F.A. 1 , Walsh D. 1 , Aktas A. 1 , Hullihen B. 1 , 





Oncology, Cleveland, OH, United States 

Background: Alterations in taste sensation may 

cause poor dietary intake and malnutrition. 

Identification of taste abnormalities can also help 

better understand eating difficulties. We evaluated 

hospice in-patients with advanced cancer about 

subjective changes in their appetite, taste sensation, 

and food preferences. We also assessed the influence 

of taste changes on dietary intake. This was 

accompanied by objective taste evaluation using 

standard chemical tests. 

Methods: We recruited 15 consecutive hospice inpatients. 

On day 1, patients were questioned about 

subjective taste changes, food preferences, and daily 

dietary intake using a structured questionnaire. A 27food 

item checklist provided food preferences based 

on the four basic taste senses. On day 2, a forced 

choice 3-stimulus drop test was performed for 

objective taste evaluation. Pearson’s correlation test 

identified the association between subjective and 

objective taste changes. 

Results: There were 7 males, 8 females; median age 

68 years (range 49-84). Changes in taste and food 

preference were common. None had received either 

radiation or chemotherapy recently. Ten reported 

subjective taste changes in response to direct 

questions. Most had weight loss and anorexia which 

suggested a possible role of taste changes in the cancer 

anorexia-cachexia syndrome. Meat aversion was 

found mostly in females. Median energy intake for all 

was 1475 kcal/d (range 224-2137). Amongst those 

with subjective taste changes most also had objective 

changes on formal testing. Subjective and objective 

taste changes correlated well. Hypogeusia for sweet 

and salt; dysgeusia for sour were common specific 

taste changes. 

Conclusions: Subjective and objective taste changes 

in advanced cancer were common. Hypogeusia for 

sweet and salt, and dysgeusia for sour were 

predominant. Awareness of individual food 

preferences helps plan diets with pleasurable meals, 

overcome anorexia, maintain adequate nutrition, and 

increase QoL. 



Is Ketamine Efficient to Terminal Symptoms 

of Advanced Cancer? 

Takigawa C. 1 

1 KKR Sapporo Medical Center, Palliative Medicine, 

Sapporo, Japan 

Aim: We occasionally have to care not only 

refractory pain but also manage the terminal 

symptoms by ketamine administration as adjuvant 

for opioid in the palliative care unit. 

The efficacy of ketamine for the terminal symptoms 

as well as refractory cancer pain are evaluated. 

Method: Patients administered ketamine for some 

terminal symptoms in the palliative care ward in KKR 

Sapporo medical center from 2009/9 to 2010/9 

followed until end of life were reviewed 

retrospectively. Patients charts were checked 

1) the age, 

2) gender, 

3) the reasons of ketamine administeration, 

4) opioid dose 

5) duration of medication, 

6) initial dose and 

7) maximum dose of ketamine. 

The effectiveness for symptoms were evaluated by a 

Japanease version of the Support Team Assessment 

Schedule (STAS-J) on the first day of administration 

and on the day after maximum dose administration. 

Adverse events were also evaluated. 

Result: In this period, there were 180 patients ended. 

46 out of 180 were administered ketamine. The 

reasons of administration on ketamine were 

refractory pain as adjuvant drug of opioid (36/46), 

sleeplessness as adjuvant of midazoram(7/46), and the 

of uncontrollable hemorrhage in the terminal stage as 

sedation (3/46). Mean duration of ketamine 

administration was 21 days, mean maximum dose 

was 90mg/day, symptom intensity decreased from 3.2 


to 0.9 by STAS-J significantly. Adverse effects were 

sleepiness, dizziness and headache. 2 patients 

discontinued PCA bolus shot, one patient ceased 

administration due to sleepiness. 

Conclusion: For some conditions in terminal cancer 

patients, ketamine is useful adjuvant but care for side 

effects. We need to verify the ketamine’s clinical usage 

in the prospective study for each symptom. 



Relaxation Therapy for Sleep Disorders in 

Palliative Care: A Randomized Study 

Pautex S. 1 , Ducloux D. 1 

1 University Hospital of Geneva, Collonge-Bellerive, 

Switzerland 

Background and objectives: Prevalence of sleep 

disorders in patients with advanced chronic 

progressive illness varies between 24 and 95%. The 

relaxation therapy, can promote sleep through 

relaxation techniques and visualization, and thus 

avoid the use of sleep medication. 

The objective of this study is to demonstrate that, if 

the somatic causes of sleep disorders are under 

control, relaxation therapy in hospital promotes sleep 

and sleep continuity. 

Design: Prospective randomized study with an 

immediate intervention group (II relaxation D3-D7) 

and a delaied intervention group (ID: sophrology: D5- 

D9), which began on 1.1.2009. The intervention 

consists of a technique of relaxation therapy of 10 

minutes recorded on a CD that the patient listen 

before falling asleep. analogue scale (VAS) between 0 

and 10: VASSS. The taking of sleeping pills was 

recorded. 

Intermediate results: 17 (II: 9; IR: 8) included 

patients (mean age 63 ± 13.5). 15 patients had cancer. 

The demographics data of two groups were similar (P> 

0.05). Sleep disorders were mainly difficulties of 

falling asleep. 10 patients had pre-existing sleep 

disorders. Physical symptoms were controlled (VAS < 

5). Respectively 10 and 7 patients had a diagnosis of 

depression and anxiety possible or probable. All 

patients except one had a sleeping pill. The VASSS ad 

inclusion was: 4.9 ± 2.7 (II: 4.4 ± 1.2; ID: 5.1 ± 3.5, P> 

0.5) The VASSS at D4 (IR-II with no relaxation therapy 

relaxation therapy) was similar in two groups: II: 3.5 ± 

2.9 and ID: 3.4 ± 0.8, P> 0.5). 5 patients in the IR group 

were evaluated until J9. No patient had decreased 

consumption of sleeping pills. 

Conclusion: The intermediate results demonstrate 

the difficulties of enrolling palliative care patients in a 

relatively simple randomized study and to assess 

patients until D 9. To date, we have not been able to 

show effectiveness of relaxation therapy on sleep 

satisfaction and a decrease of sleeping pills. Inclusion 

of patients is ongoing. 



Total Parenteral Nutrition at Home: A Casestudy 

Neves S. 1 , Lupi S. 1 , Coimbra F. 1 , Mota C. 1 , Tomé M.M. 1 , 

Feio M. 1 

1 Instituto Português de Oncologia de Lisboa Francisco 

Gentil, EPE, Unidade de Assistência Domiciliária, 


Total parenteral nutrition (TPN) has restricted 

indications in palliative care: in patients with 

gastrointestinal occlusion, a prognosis superior to 6 

months, a good quality of life, being clinically stable, 

with a Karnofsky Index > 50 and having an adequate 

intravenous access. 

In May 2008 the Medical Oncology Service requested 

home care for a 48 year-old lady with metastatic 

ovarian carcinoma, malignant intestinal occlusion 

and still on palliative chemotherapy. Needs identified 

were symptomatic control and providing TPN at 

home. 

The team, being aware of what this request involved, 

reacted with concern, were not sure if conditions were 

gathered to perform TPN at home. Also we questioned 

the benefits versus risks and our capacity to provide at 

least two home visits a day, without compromising 

the quality of medical care to the other patients. 

In the first contact with patient and caregiver they 

were very receptive to continue the TPN at home. 

The patient left the hospital on May 20 th , to celebrate 

her 49 th birthday that took place on May 21 th at her 

home. 

During the time spent at home she had the 

opportunity to organize and participate in family 

birthdays, to share children’s achievements, and to 

spend weekends alone with her husband. She assisted 

her mother on her disease process and subsequent 

death. She moved house and celebrated her 50 th 

birthday with friends and family, thus completing 

one of her goals in life. 

During the 18 months of home monitoring she was 

hospitalized once for febrile neutropenia after 

palliative chemotherapy, showing no direct 

complications related to the TPN. 

This experience allowed the team to acknowledge 

that it was possible to ensure TPN at home in a safe 

way for patients, caregivers and professionals with 

benefits to the patient / family. 



Analysis of Patients Referred to a Specialist 

Palliative Care Service with Neurological 

Conditions 

Pinheiro P.A.R. 1 , Freiherr von Hornstein W. 1 

1 Specialist Palliative Care Service Cavan & Monaghan, 

Health Service Executive Dublin North East, Cavan, 

Ireland 

Background: Seizures can present a considerable 

diagnostic challenge. They are manifestations of 

paroxysmal, bioelectric functional disturbances of the 

brain. Depending on the extent and the location of 

this pathological cerebral over activity, impairment of 

motor function, vegetative function, sensory perception 

or behaviour can occur. These impairments can have a 

considerable impact on the patient’s quality of life. To 

a varying degree they influence the family and 

caregiver’s quality of life. 

Objective: The aim of this study is to appreciate the 

clinical manifestations of seizure activity and its 

relevance in a palliative care setting. 

Method: Patients referred to a Specialist Palliative 

Care service with neurological manifestations were 

analyzed. Underlying pathological conditions 

identified were: primary and secondary brain 

tumours, dementias and cerebral infarcts/strokes both 

hemorrhagic and ischaemic. Demographic data, 

clinical symptoms and signs, reason for referral and 

medication were analyzed. 

Results: The time frame of under diagnosed or under 

treated seizure activity ranged up to 6 months. Non 

motor seizures accounted for the majority of under 

diagnosed and under treated seizure activity. The 

impact on communication abilities was in some cases 

spectacular such as to free a patient from a locked-in 

condition. Frequent adjustments to anticonvulsant 

therapy were needed due to the dynamic neurological 

manifestations in these palliative care patients. 

Conclusion: It is a challenge to diagnose seizure 

activity clinically in palliative care patients. 

Appreciation of the less noticeable manifestations of 

pathological cerebral over activity may allow the 

commencement of anticonvulsive treatment and 

improve the quality of life of those individuals, their 

families and caregivers. It is important to improve 

diagnosing seizure activity because very efficient 

treatment is available. This needs regular dose 

adjustments and close monitoring. 



Fatigue among Elderly Cancer Patients in a 

Brazilian Sample: Prevalence, Severity, Effect 

on Daily Functioning and Correlates 

Olivieri F.C.G. 1 , Chiba T. 1 

1 Instituto do Câncer do Estado de São Paulo, Clinica 

Médica/ Cuidados Paliativos, São Paulo, Brazil 

Introduction: Fatigue is a frequent complaint in 

different medical conditions. In cancer patients, 

fatigue results in lack of energy, malaise, lethargy, and 

diminished mental functioning that profoundly 

impairs quality of life. 

Research aims: This study was designed to measure 

prevalence and severity of fatigue, its effect on daily 

functioning and correlates. 

Study design and methods: A total of 25 

outpatients from Palliative Care Program of South 

American teaching hospital were interviewed 

between September 2008 and April 2009. Inclusion 

criteria were the diagnose of incurable cancer and age 

of 60 years and over. Fatigue prevalence, intensity and 

daily functioning effect were measured using the Brief 

Fatigue Inventory. Data collected from medical charts 

included diagnosis, oncologic therapy, Edmonton 


Symptom Assessment Scale, Karnofsky Performance 

Status and recent laboratory results. Statistical analysis 

were made using Spearman´s Rank Correlation and 

Correlation Test. 

Results: Abnormal fatigue was reported by 56% of 

patients. Symptom average, on a 0-10 scale, was 3.7. 

Fatigue levels were reported to interfere on General 

activities (p< 0.001), Mood (p< 0.001), Walking ability 

(p=0.002), Normal work (p=0.001), Relations with 

other people (p< 0.001) and Enjoyment of life (p< 

0.001). 

Usual level of fatigue during the past 24 hours was 

related with pain (p=0.019), nausea (p=0.023) and low 

wellbeing feeling (p=0.001). Age, cancer site, anemia, 

medications in use and other symptoms were not 

related to fatigue levels. 

Conclusion: Fatigue was highly prevalent and had 

the 2 nd higher intensity among 9 assessed symptoms 

on our sample. Fatigue interfered in all aspects of the 

patient´s life asked. Association of pain and fatigue is 

in accordance with medical literature on the subject, 

which suggests there may be an etiological 

relationship between pain and fatigue. 

Results show fatigue is an important cancer related 

symptom. 



Evaluation of an Interdisciplinary Led 

´Breathe Easy´ Programme in Palliative Care 

Prendergast S. 1 , Cahill F. 1 , Mc Quillan R. 1 

1 St. Francis Hospice, Dublin, Ireland 

Aim: The aim is to evaluate an occupational therapy 

(OT) and physiotherapy (PT) led breathlessness 

management programme. 

Background: Breathlessness is a complex symptom 

which is optimally managed by an integrated 

multidisciplinary approach. OT and PT have a 

valuable role to play in the non pharmacological 

management of breathlessness in palliative care. 

Collaborative working between the two disciplines 

lends itself to a holistic and practical approach. The 

focus of the ‘Breathe Easy’ programme is to promote 

exercise and self management of breathlessness to 

improve emotional and physical wellbeing. 

Methods: 17 patients participated in a four week 

long ‘Breathe Easy’ Programme, which was tailored to 

meet the groups’ needs. Referrals were received from 

the homecare teams, day care and outpatient services. 

Outcome measures used were the Hospital Anxiety 

and Depression scale (HADS), Chronic Respiratory 

Questionnaire (CRQ) and a six minute walk test 

(6MWT).These were administered before and after the 

programme. Qualitative data was collected using a 

feedback questionnaire. Interventions during the 

programme included activity pacing, relaxation 

strategies, breathing techniques and exercise. 

Results: Over sixteen months, 55 patients were 

referred to the ‘Breathe Easy’ programme. Only 17 

completed it. The remaining 38 did not partake due to 

unsuitability, being medically unwell, patient 

preference or death. Objectively, 58% of patients 

improved in their anxiety scores and 50% improved 

in their depression scores. 67% improved in the 

dyspnoea and fatigue domains of the CRQ. 58% of 

patients improved in their 6MWT. Qualitative data 

indicated that patients enjoyed the group and found 

the information beneficial. 

Conclusion: The combined OT and PT approach to 

the ‘Breathe Easy’ programme is effective in providing 

patients with practical skills to manage their 

dyspnoea. The authors identified that early referrals 

and patient appropriateness to the programme is a 

major challenge. 




Incidence and the Way of Appearance of 

Dyspnea at Terminally Ill Cancer Patients 

during their Stay in a Hospice Important for 

Timing of Physiotherapeutic Intervention 

Van den Broek J. 1 , Zuurmond W.W.A. 2 , Gootjes J.R.G. 1 , 

Perez R.S.G.M. 2 , Van Tol C. 1 

1 Hospice Kuria, Amsterdam, Netherlands, 2 VU 

University Medical Centre, Anesthesiology, 


Introduction: One of the most difficult to treat 

symptom by physiotherapists is dyspnea. 

Literature shows that 70% of the lung-cancer patients 

report dyspnea, for the general cancer population this 

amounts to 45%. For physical therapy, onset of 

161 


(Thursday)


(Thursday) 


treatment will be predominatly during condition 1. 

When dyspneic symptoms only appear during 

activity treatment during rest is preferred. This 

provides the opportunity for specific advice and 

breathing instructions in rest and the possibility for 

functional exercises without the influence of this 

symptom. 

For terminally ill cancer patients, it is therefore 

necessary to establish onset of dyspnea in order to 

initiate pre-emptive measures and timely treatment 

interventions. This requires assessment of dyspnea 

during activity (condition 1) and dyspnea at rest 

(condition 2). 

Method: This retrospective study will be focused on 

assessment of occurrence and timing of signs and 

symptoms of dyspnea. To that purpose, standardized 

symptom checklists collected during four years (2005 

- 2008) in a high care hospice will be evaluated. 

Standardized assessment comprised three times daily 

symptom assessment, registrations for dyspnea 

symptoms include timing (daytime, evening and 

night) and trigger (spontaneous/at rest and during 

activity). 

Results and conclusions: Of all 357 registered 

patients, 338 were primary cancer patients. 

Preliminary results for 2008 reveal 75 cancer patients, 

of which 57 with a report of dyspnea. For 29 of these 

patients the onset of dyspnea was during activity. 

Analyses for the total four years screening will be 

presented at the EAPC meeting in Lisbon. 



Interdisciplinary Intervention in a Case of 

Mycosis Fungoides 

Ibáñez del Prado C. 1 , Donis Barber L.D. 1 , Diaz Sánchez 

R. 1 , Davies A. 1 , García Raya S. 2 , Jiménez Cortés R. 2 , Saez 

Lopez S. 2 , Martínez Casares N. 2 , Jose Moreno G. 2 , Jiménez 

Noguero A. 2 , Lancho Moreno M.P. 2 , Huerta Cebrián S.A. 2 

1 Hospital Virgen de la Poveda, Palliative Care, Villa del 

Prado, Spain, 2 Hospital Virgen de la Poveda, Villa del 

Prado, Spain 

Objective: Based on a model of comprehensive 

intervention, which ensures continuity in care despite 

fluctuations in symptoms, we will describe how such 

an approach in an interdisciplinary team (physician, 

psychologist, nurse and auxiliary nurse) has resulted 

in overall symptom control, being the primary 

objective of palliative care. 

Methodology: Case study. 

Results: An application of the comprehensive 

intervention model. This involves an interdisciplinary 

patient assessment and continuous, fluid 

communication between all members of the team 

through structured daily meetings. Female patient 

aged 63 diagnosed with mycosis fungoides and 

polycystic liver and has undergone a prior renal 

transplant. During the hospitalization the patient 

presents progression in the abdominal tumor, buccal 

infiltration and multiple skin ulcers. In addition to 

this, the patient has a complex social situation, 

displays a body image disorder, demoralization 

syndrome, anxiety attacks and has difficulty in 

emotional venting. The comprehensive intervention 

included adaptation of body image, fluctuation in 

food intake and functional dependency and the 

control of pain, infection and bleeding ulcers. The 

demoralization syndrome subsided within two weeks 

with the use of cognitive restructuring, guided 

imagery and psycho-education about the process of 

the illness. Medication was adjusted according to 

comorbidity and constant fluctuation in symptoms. 

This approach ensures that all areas are addressed: 

physical, functional, psychological, social, cultural 

and transcendental. 

Conclusions: The full involvement of the 

interdisciplinary team in defining objectives and in 

the implementation of interventions favoured both 

the achievement of these interventions and the 

development of treatments. With this approach we 

can achieve patient comfort and prevent burnout in 

hospital staff. If a dignified death is the aim, this 

model of comprehensive intervention is the answer. 



Prevalence of Depressed Mood and Anxiety in 


Aktas A. 1 , Walsh D. 1 , Karafa M.T. 2 , Schleckman E. 1 







States 

Background: Prevalence of depression/anxiety 

varies in cancer. These symptoms may be inaccurately 

estimated by clinicians. We aimed to investigate the 

prevalence/severity of depressed mood/anxiety, their 

predictors, and the influence of pain/sedation on 

psychiatric morbidity. 

Methods: We surveyed 100 consecutive hospice 

patients with advanced cancer. Questions included 

mood, pain, knowledge of diagnosis/prognosis 

supplemented by visual analogue scales (VAS). VAS 

scores for mood (VASM), anxiety (VASA), pain (VASP), 

sedation (VASS) ranged from 0 (best) to 100 (worst). 

All answered a single question (Are you depressed?), 

75 completed VASM, 74 VASA, 75 VASP, 75 VASS. 50 

given BDI-1 (Beck Depression Inventory), 25 

completed. VAS scores were split into 3 categories: 0- 

39, 40-69, 70-100 (no/mild, moderate, severe). 

Results: 52% female; 15% nerves 13% depression 

history; 5% anxiety; 74% on opioids; 6% 

antidepressants, 5% anxiolytics, on admission. 

Commonest primary cancers : gastrointestinal (32%), 

respiratory (28%), genitourinary (16%). 58% knew 

diagnosis; 37% prognosis. 46% pain at interview. 23% 

depressed on single question. Median age 69 (59, 77). 

VAS scores: mood 48 (29, 62); anxiety 27 (11, 52); pain 

26 (2, 51); sedation 40 (18, 65). Median score for BDI-1 

was 11 (7, 15). Patient numbers on VAS scores (mild, 

moderate, severe) were 32, 28, 15 (mood); 45, 23, 6 

(anxiety); 47, 22, 6 (pain); 37, 23, 15 (sedation). BDI-1 

revealed 3 not depressed, 4 mild, 14 moderate, 4 

severely depressed. Completion rate 75% for all VAS; 

25% for BDI-1. Predictors of depressed mood/anxiety 

showed only history of nerves, depression, and 

anxiety associated with VASM. VASA and VASS were 

moderately correlated. 

Conclusions: Prevalence of moderate/severe 

depressed mood 60%; anxiety 40% by VAS. 

Completion rate 75% for all VAS; 50% for BDI-1. 

Consistent cut-off points as primary outcomes in 

future studies will enhance their validity, 

comparability, and clinical applicability. 



Dyspnea and Pain in Patients with Pulmonary 

Malignancies 

Yashiro E. 1 , Nozaki-Taguchi N. 1 , Nishino T. 1 

1 Chiba University, Department of Anesthesiology, 

Chiba, Japan 

Background: Dyspnea and pain have many 

common features. For example, both are the 

symptoms which distress terminally ill patients and 

are treated with the common drugs: opioids. Also, 

there seems to be some interaction between them, 

such as the augmenting effect on dyspnea by pain and 

analgesic effect by dyspnea. Survey focusing on the 

patients having both dyspnea and pain have not been 

conducted. 

Aim: The aim is to examine the clinical course of 

patients who suffered from both dyspnea and pain. 

Methods: We carried out a retrospective chart review 

of 44 patients who had been admitted to the 

department of respiratory disease and were referred to 

the palliative care team from February 2006 to June 

2010. Demographic and clinical data, the time course 

of dyspnea and pain, and the information about the 

therapeutic interventions, especially opioids (type, 

dose, purpose, adverse effect) were collected. Final 

data were obtained from 18 patients who spent their 

last days at our hospital while suffering from both 

dyspnea and pain. 

Results: Among 18 patients, pain was more 

distressing than dyspnea in one patient, dyspnea was 

more distressing than pain in 12 patients, and in the 

other 5 patients, the evaluation were difficult. Opioids 

to alleviate pain in the patient mainly suffering from 

pain were increased by 5% from the opioid dose used 

for dyspnea relief whereas opioids to alleviate dyspnea 

in the 12 patients mainly suffering from dyspnea were 

increased by 30-1000% from the opioids dose used for 

analgesia. The respiratory depression in this study, 

defined as apnea lasting for more than 10s, was 

observed in the subject whose main symptom was 


Conclusions: Dyspnea would be more devastating a 

symptom than pain in patients with terminal-stage 

intrathoracic malignancies. It was difficult to detect a 

clear-cut interaction between dyspnea and pain in 

this group of patients. Further examination would be 

necessary. 

Funds: This work was supported by MEXT KAKENHI 

22791418. 



Palliative Care Rehabilitation (PCR): 

Preliminary Results from an Innovative 

Program in Ottawa, Canada 

Chasen M. 1 , Bhargava R. 1 , Gravelle D. 1 , Pereira J. 1 

1 University of Ottawa-Elisabeth Bruyere Hospital, 

Department of Oncology, Ottawa, ON, Canada 

Background: Many patients with limited life 

expectancies may still benefit from rehabilitation. We 

have implemented a PCR Program with an 

interprofessional team. The aim is to improve quality 

of life and to keep patients more independent.The 8week 

program includes interventions to improve 

nutrition, physical functioning, psychological 

wellbeing and symptom control. 

Methods: Patients were assessed using the Patient 

Generated Subjective Global Assessment (PG-SGA), 

Distress Thermometer (DT), The Community Healthy 

Activities Model Program for Seniors(CHAMPS), the 

Edmonton Symptom Assessment Scale (ESAS), MD 

Anderson Symptom Inventory (MDASI), 

Multidimensional Fatigue Inventory (MFI-20), and 

various functional evaluations including the 6 minute 

walk test. 

Results: Thirty five patients have been assessed in 

the interdisciplinary programSince February 2010, 

thirteen patients have completed the full 

program.Thirty five patients, 19 male and 16 female 

ages 32 to 90 years, with a cancer diagnosis were 

evaluated. Initial visit values were as follows:The 

mean score(MS) PGSGA score 11. MS on distress 

thermometer 5.4. Most frequent complaints on ESAS 

(>4) were nausea, drowsiness, pain and 

tiredness.Patients spent a mean of 24 hours per week 

on light and 12.2 hours performing sedentary 

activities on MS on the MDASI were enjoyment of life 

7.0; general activity 6.75; work 6.67; walking 6.33; 

mood 6.33; relation with others 4.25.Fatigue 

measurements were: physical fatigue 16.7; general 

fatigue 16.4 and decreased activity 15.8.On the 6 

minute walk test the mean distance covered 257 

meters. Mean values of reach forward 30.8 cm; grip 

strength 24.2 Kg; time up and go 11.6 sec.Updated 

post program evaluation scores will be presented. 

Conclusions: Patients enrolled in this program are 

demonstrating early positive outcomes. Appropriate 

patient selection is important to ensure completion of 

the program. To date there is high level of satisfaction 

experience by enrolled patients. 



Delirium in Palliative Home Care Setting: A 

Retrospective Study 

Feio M. 1 , Botelho A. 1 , Neves S. 1 , Lupi S. 1 , Coimbra F. 1 , 

Mota C. 1 , Tomé M.M. 1 

1 Instituto Português de Oncologia de Lisboa Francisco 

Gentil, EPE, Unidade de Assistência Domiciliária, 


To describe delirium episodes and assess results 

achieved in the setting of palliative home care. 

Retrospective study of patients followed during 

2009.Retrieved data on identification, main 

pathology, diagnosis of delirium and its type, exams, 

treatment, identified etiological factors, outcomes. 

Fifty patients were followed, 30 (60%) women, aged 

67±13 years (34-93). 

The most common topography were 

otorhinolaringology/head and neck cancers 11 (22%); 

digestive 11 (22%) and gynaecologic malignant 

tumours 9 (18%). 32 (72%) patients had metastatic 

disease, 12 (24%) locally advanced, 2 (4%) 

haematological malignant diseases and 4 (8%) nononcological 

diseases. Eighteen (36%) patients had 20 

delirium episodes. One episode (5%) was of the 

hyperactive type, 8 (40%) hypoactive and 11 (55%) 

mixed. In 15 (75%) patients neuroleptics were used, 

haloperidol as first line in 11 (55%), levomepromazine 

in 2 (10%) and olanzapine in 2 (10%). A second 

neuroleptic was used in 5 (25%) patients. In 12 

episodes were done complementary exams. The main 

etiological factors identified were: infections 9 (45%), 

hepatic insufficiency 5 (25%), dehydration 4 (20%). In 

9 (45%) several factors were present. In 13 (65%) a 

diagnosis of terminal delirium was done. The delirium 

episodes lasted on average 10±13 days, median 4 days, 

(1-49). In 4 (20%) the delirium reverted, in 11 (55%) 


partial improvement was achieved and in 4 (20%) no 

improvement was registered (in 1 case no information 

could be obtained). Palliative sedation was used in 2 

(10%). After delirium diagnosis patients survived 

15±17 days, median 7 days, (1-56). 9 patients were 

admitted, 9 patients died at home. 

The study has the limitations of being retrospective, 

having few patients but describes the home palliative 

setting. The frequency, types, multiple etiological 

factors are similar to what as been described. The low 

reversibility might be associated with the advanced 

disease of this group of patients. 



Can “Steroid Switching” Improve Steroidinduced 

Psychosis of Advanced Cancer 

Patients? A Report of Three Cases 

Kanemura S. 1 , Okishiro N. 2 , Tsuneto S. 2 

1 Gratia Hospital, Hospice, Osaka, Japan, 2 Osaka 

University Graduate School of Medicine, Department 

of Palliative Medicine, Osaka, Japan 

Aim: To examine the effectiveness of “steroid 

switching” for treating steroid-induced psychosis (SIP) 

of advanced cancer patients. 

Methods: We experienced three advanced cancer 

patients who developed SIP. We treated SIP by 

switching from betamethasone to prednisolone. 

Results: Mr. A was a 70-year-old man with lung 

cancer and multiple bone metastases. He complained 

of back pain due to vertebral metastasis. To manage his 

back pain, we started oral betamethasone (4 mg/day) 

with transdermal fentanyl (50 mcg/hr). He developed 

delirium on the night. We stopped betamethasone on 

the next day and delirium was alleviated gradually 

after six days. We started oral prednisolone 

(20mg/day) to manage his pain again but he did not 

develop delirium.Mr. B was a 60-year-old man with 

malignant pleural mesothelioma and respiratory 

secretions. He was treated with oral prednisolone 

(10mg/day) to decrease respiratory secretions but little 

effect was seen. We switched from prednisolone (10 

mg/day) to betamethasone (2mg/day). On the 3 rd day 

after the switch, he began to develop delirium. When 

we switched from betamethasone (2 mg/day) to 

prednisolone (10mg/day), delirium was alleviated 

gradually and disappeared within several days.Mr. C 

was a 60-year-old man with pancreatic cancer and 

cancerous peritonitis. He complained of fatigue due to 

the primary disease. To manage fatigue, we started oral 

betamethasone (2 mg/day) and increased to 4mg/day. 

Although fatigue was alleviated, he began to feel 

rushed and behave impulsively. His symptoms were 

gradually resolved from the 2 nd day after we switched 

from betamethasone (4mg/day) to prednisolone (30 

mg/day). 

Conclusion: “Steroid switching” may improve SIP of 

advanced cancer patients. 


Withdrawn 



Nursing Diagnosis Classification System in 


Barallat Gimeno E. 1 , Palomar Naval C. 2 , Jiménez Vilchez 

A. 1 , Barberà Cortada J. 3 , Canal Sotelo J. 1 , Nabal Vicuña 

M. 1 

1 Hospital Universitario Arnau de Vilanova, Supportive 

Team UFISS CP, Lleida, Spain, 2 Hospital Universitario 

Arnau de Vilanova, Lleida, Spain, 3 Hospital Sta. Maria, 

Supportive Team UFISS CP, Lleida, Spain 

Introduction: Standardized nursing languages 

provide uniform nomenclature for diagnosis, 

interventions and outcomes of nursing process and 

have implications for competency evaluation, 

reimbursement and curriculum design. It has not 

been developed in palliative care (PC). 

Aim: To describe nursing diagnoses (ND) profile of a 

cohort of patients under PC. 

Method: we developed a form with the 37 most 

prevalent ND in PC from NANDA classification. 

Diagnoses were divided in 13 domains(Table 1). 

During 4 months we searched the presence of ND in 

every new patient. 

Variables: Socio-demographic, main illness, functional 

and cognitive situation; place of assessment and 

NANDA ND Taxonomy II (2005-2006). 

Statistics analysis: Descriptive analysis and correlation 

by Pearson correlation were developed. 

Results: N=100. Main age: 68.9 (36-87). Males 70%; 

Main illness: lung cancer in 33%; 1% non cancer 

illness. Place of assessment: 10% Emergency 

Department, 31% outpatient’s clinic, 59% inpatients 

units. Functional situation: >50% had Barthel > 60 (0- 

100). 70% no cognitive impairment (Pfeiffer 

questionnaire). Prognosis assessed by PPS ≥ 70 in 32%. 

Main number on NANDA diagnoses was 9.1/patient 

(0-21). Altered domains and NANDA diagnoses can be 

seen in table 1. Correlation between number of ND 

and functional impairment was r =-0.7. 

Conclusions: 

1) Most frequent ND profile was Bathing or hygiene 

self-care deficit, Dressing or grooming self-care deficit, 

Toileting self-care deficit, Fatigue, Activity intolerance 

and Impaired physical mobility 

2) Lower PS correlates with greater number of ND. 

DOMAINS NANDA DOMAINS NANDA 

DIAGNOSES AND DIAGNOSES AND 

FREQUENCY FREQUENCY 

1. Health 00080 (31%) 8. Sexuality 0 (0%) 

promotion 

2. Nutrition 00002 (18%) 9. Coping/ 70 (13%) 

00103 (19%) Stress 74 (27%) 

Tolerance 147 (9 %) 

148 (18%) 

3. Elimination 00011 (36%) 10. Life 66 (8%) 

00014 (14%) Principles 67 (1%) 

00015 (29%) 

00016 (25%) 

00031 (2%) 

4. Activity/Rest 00032 (37%) 11. Safety/ 45 (20%) 

00085 (42%) protection 47 (29%) 

00092 (42%) 

00093 (46%) 

00095 (41%) 

00102 (32%) 

00108 (54%) 

00109 (49% 

00110 (44%) 

5. Cognitive 00051 (15%) 12. Comfort 32 (26%) 

and perceptual 00128 (10%) 1133 (22%) 

134 (9%) 

6. Self-perception 118 (8%) 13. Growth/ 101 (10%) 

120 (15%) Development 

124 (7%) 

7. Role and 60 (36%) 

relationships 62 (30%) 

[TAble 1: altered domains and NANDA diagnoses in PC] 



Effect of Morphine for Dyspnea with Pain 

Treated by Fentanyl 

Hayashi A. 1 

1 St. Luke’s International Hospital, Pallitative Care, 

Tokyo, Japan 

Research aims: Many terminal cancer patients with 

pain treated fentanyl experience dyspnea due to lung 

lesions. We explored the effect of additional 

morphine for the terminal cancer patients who have 

dyspnea with pain treated by fentanyl. 

Study design and method: In this retrospective 

case-controlled study, we used data from electronic 

medical chart of 169 terminal cancer patients who 

admitted to our hospice. The effect of morphine for 

dyspnea with pain treated by fentanyl was evaluated 

by NRS, and analyzed by chi-squared test. 

Result: Only 8 patients experienced dyspnea with 

pain treated fentanyl, were administered additional 

morphine for control of dyspnea. Average NRS of 

dyspnea was significantly decreased by 

administration of low dose of morphine (5~30mg) 

from 7.2 to 3.4 (p< 0.05), without significant 

deteriorating of saturation of oxygen (p=0.83). 

Conclusion: Additional administration of morphine 

for the patients who have dyspnea with pain treated 

fentanyl was very effective. 



Effects of Yokukansan, a Traditional Japanese 

Medicine, on Delirium in Advanced Cancer 

Patients 

Kawahara R. 1 , Okuno S. 1 , Oyama S. 2 

1 Nissay Hospital, Anesthesiology, Osaka, Japan, 

2 Nissay Hospital, Osaka, Japan 

Background: Delirium is a neuropsychiatric 

syndrome occurring frequently in advanced cancer 

patients. Since delirium reduces the quality of life in 


those patients, its management is important in their 

supportive and palliative care. Yokukansan (TJ-54; 

Tsumura and Co. Japan), a traditional Japanese 

medicine, is used to treat a variety of symptoms 

associated with age-related neurodegenerative 

disorders without worsening their cognitive function 

and ability to perform activities of daily living. The 

aim of this study was to investigate the effects of 

yokukansan on delirium in cancer patients. 

Methods: The subjects consisted of 11 patients (9 

males, 2 females), aged 64-84 years. They were 

prescribed TJ-54 or yokukansankachinpihange (TJ-83) 

for delirium based on the DMS-IV diagnostic criteria. 

TJ-54 is composed of seven herbs and TJ-83 is 

essentially TJ-54 with two additional herbs. Ten 

patients were given TJ-54 orally (n=7) or transanally(n=4) 

at doses of 5.0 or 7.5 g/day, and one was 

given TJ-83 orally at a dose of 5.0 g/day. The severity 

of delirium was evaluated using Delirium Rating 

Scale-revised 98 (DRS), Memorial Delirium 

Assessment Scale-Japan (MDAS-J), Nurses Delirium 

Rating Scale (NDRS), and Agitation Distress Scale 

(ADS). Score values expressed with medians and 

ranges were statistically analyzed with the Wi1coxon 

signed rank test. 

Results: Clinical improvement was obtained in 10 

patients after an average of 4.8 +/- 2.3 days following 

the commencement of TJ-54 or TJ-83. The scores of 

DRS, MDAS-J, NDRS, and ADS significantly reduced 

from 21 (36-10) to 6 (36-0) (p=0.005), 16 (24-6) to 3 

(20-0) (p=0.005), 10 (14-4) to 3 (14-0) (p=0.007), and 

10 (16-4) to 3 (13-0) (p=0.008), respectively. No 

adverse effects were noted. 

Conclusion: Yokukansan has been shown to have a 

significant impact on delirium in advanced cancer 

patients. Traditional Japanese medicines could be the 

potent treatment of choice in supportive and 





Can Trazodone Improve Insomnia and 

Nightmare in Cancer Patients?: A Report of 

Two Cases 

Tanimukai H. 1,2 , Kumakura Y. 2,3 , Okishiro N. 2,3 , Matsuda 

Y. 2,4 , Okamoto Y. 2,5 , Kabeshita Y. 1 , Ohno Y. 2,6 , Tsuneto S. 2,3 


Department of Psychiatry, Suita, Japan, 2 Osaka 

University Hospital, Palliative Care Team, Oncology 

Center, Suita, Japan, 3 Osaka University Graduate 

School of Medicine, Department of Palliative 

Medicine, Suita, Japan, 4 Osaka University Graduate 

School of Medicine, Department of Anesthesiology 

and Intensive Care Medicine, Suita, Japan, 5 Osaka 

University Graduate School of Medicine, Department 

of Hospital Pharmacy Education, Suita, Japan, 6 Osaka 

University Hospital, Division of Nursing, Suita, Japan 

Aim: Cancer patients often suffer from insomnia due 

to physical symptoms, mental distress, drug related 

side effects and others. Nightmare is one of the strong 

factors interfering with maintenance of comfortable 

and satisfiable sleep and it causes the change of 

routine behavior for sleep. Though the prevalence 

and standard treatment of insomnia and nightmare 

in cancer patients have not been established, we 

aimed to treat insomnia and nightmare by trazodone 

(antidepressant) which the International Association 

for Hospice Palliative Care has recommended for 

insomnia as one of the essential drugs. 

Methods: We experienced two cancer patients whose 

nightmare disappeared after prescription of 

trazodone. Mrs. A was a 69-year old woman with 

breast cancer patient. Mrs. B was a 49-year old women 

with uterine corpus cancer. 

Results: Both patients suffered from terrible dream at 

midnight. They had uncomfortable awakening 

during sleep and hesitated to sleep again due to scary 

emotion for the terrible dreams. Though they had 

already had benzodiazepine hypnotics for insomnia, 

those medications did not appear to be effective. We 

advised the attending doctors to add on trazodone 

(12.5ń25mg per day dose) before bedtime. The next 

day of their first intake of trazodone, their dreams did 

not disappear completely but their dreams changed 

from terrible to comfortable contents. After that, the 

dream was almost disappeared at night in Mrs. A. She 

has kept having the comfortable sleep till now and 

has not had a scare emotion for sleep at night. 

Conclusions: Trazodone may be a promising drug 

for improving insomnia and nightmare of cancer 

patients. 

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AbAbstract number: P548 


Performance of PainDETECT for Identifying 

Cancer Neuropathic Pain in the European 

Palliative Care Research Collaborative 

Computerised Symptom Assessment Study 

Rayment C.S. 1 , Bennett M.I. 2 , Aass N. 3 , Hjermstad M.J. 4 , 

Kaasa S. 5 

1 ST5 Palliative Medicine, Yorkshire Postgraduate 

Deanery, Leeds, United Kingdom, 2 Lancaster 



United Kingdom, 3 The Norwegian Radium Hospital, 

Department of Clinical Cancer Research, Oslo, 

Norway, 4 Oslo University Hospital, Regional Center 

for Excellence in Palliative Care, Department of 

Oncology, Oslo, Norway, 5 Trondheim University 

Hospital, Norwegian Directorate of Health, Faculty of 

Medicine, NTNU, Trondheim, Norway 

Aims: To investigate the performance of the 

painDETECT screening tool for identifying patients 

with cancer neuropathic pain. We hypothesised that 

painDETECT would have similar psychometric 

properties in patients with cancer pain as in noncancer 


Method: 1051 patients with non-curable cancer from 

16 countries completed 71 items on symptoms and 

quality of life on touch screen computers. Pain type 

was a clinical diagnosis recorded on the Edmonton 

Classification System for Cancer Pain (ECS-CP). 

Patients completed painDETECT if they scored 1 or 

above on a numerical rating scale for pain intensity. 

We compared performance of painDETECT against 

clinical evaluation of pain type. 

Results: 670 (63.7%) patients had pain; of these 534 

(79.7%) had nociceptive pain, 113 (16.8%) had 

neuropathic pain, and 40 (6%) could not be classified 

on the ECS-CP. Median painDETECT scores for 

nociceptive and neuropathic groups were 8 and 13 

respectively, p=0.001. Sensitivity and specificity of 

painDETECT was 53% and 77% respectively; positive 

and negative predictive values were 33% and 89%. All 

6 symptom items on painDETECT were significantly 

associated with cancer neuropathic pain but items 

relating to burning, tingling/prickling and numbness 

were most strongly associated (all p< 0.001). Items 

describing radiation and fluctuating pain were not 

associated with cancer neuropathic pain. 

Conclusions: painDETECT showed inadequate 

sensitivity in identifying cancer neuropathic pain 

despite significant associations between scale items 

and pain type. This suggests that adapting cut-off 

scores or item content may be needed for future use in 

cancer pain. However, further research on 

phenotyping cancer neuropathic pain is required, 

alongside the need for consistency by clinicians in 

classification, diagnosis and assessment of cancer 




What Items of the Palliative Outcome Scale 

(POS) Are Most Useful to which Practitioners 

for Research and Clinical Practice: A 

European and African Survey 

Higginson I.J. 1 , Bausewein C. 1,2 , Benalia H. 1 , Daveson B. 1 , 

Downing J. 3 , Mwangi-Powell F.N. 3 , Harding R. 1 , on behalf 

of PRISMA 



Rehabilitation, London, United Kingdom, 2 Deutsche 

Gesellschaft für Palliativmedizin e.V., Berlin, 

Germany, 3 African Palliative Care Association, 

Kampala, Uganda 

Aim: To evaluate which outcome measures 

practitioners use, their views on which aspects are 

most important, and to determine any differences 

regarding views between practitioners according to 

background or experience. 

Methods: On line survey of professionals in Europe 

and Africa identified through national and 

international associations and known users of 

instruments in palliative care. Assessment of measures 

used and reasons for use. Those using the POS were 

asked to rate the usefulness of the 10 individual items, 

and then to rank the three most useful times. They 

were also asked how they used the open questions. 

Results: Total of 392 responses including all parts of 

Europe and Africa. Of 18 measures assessed, use in 

clinical practice was usually two to three times more 

prevalent than used for research. Most measures used 

commonly in clinical practice were also used 

commonly for research. For POS items, 59% or more 

of the respondents rated every item as at least very or 

fairly useful. The most useful was pain control, 

followed by patient anxiety, symptom control, and 

then feeling depressed. Main problems (the open 

question) was in the middle / lower end of the 

rankings - 8 th most important. 

Conclusions: Measures are often used in both 

clinical practice and research. Eliciting patients’ main 

problems was rated as less important as other aspects 

such as pain control. 

This study is part of the PRISMA project funded by the 

Framework 7 of the EC (Health-F2-2008-201655). 



Symptom Burden Index: A New Measurement 

Aktas A. 1 , Walsh D. 1 , Karafa M.T. 2 , Hullihen B. 1 







States 

Background: Prevalence, severity, and frequency 

are often assessed as separate symptom characteristics; 

distress is rarely included. Symptom burden may 

capture the combined impact of prevalence, severity 

& distress of multiple symptoms. We developed a 

symptom burden index (SBI) & assessed the relation 

of patient demographics to SBI. 

Methods: 46 symptoms were assessed in 181 

consecutive advanced cancer patients. Symptoms 

were measured for severity & distress 

(bothersome/distressful or not). Age was analyzed as 

≥65 vs < 65 yrs; ECOG PS1 vs PS2 vs PS3-4. For each 

symptom a SBI was calculated: SBI = Modified 

Symptom Severity Score (MSSS) × 10 (if Burdensome). 

MSSS was calculated as the severity score times a 

multiplier (for none 0 × 0, mild = 1 ×1, moderate 2 × 2, 

severe 3 × 4). Total SBI was the sum of all SBI. Logistic 

regression analysis measured the relationship 

between demographic factors & TSBI. The factors that 

have a univariable p-value of < 0.20 were examined 

for multivariable relationships. 

Results: Means (95%CI) & p values from univariable 

analysis were: < 65 yrs 217 (186, 248), ≥65 158 

(130,186), p=0.005; ECOG PS1 153 (121, 188); ECOG 

PS2 182 (138, 226); ECOG PS3-4 225 (190, 260), 

p=0.013; inpatient 154 (121, 187), outpatient 205 

(178, 232), p=0.019; male191 (162, 220), female 178 

(147, 209), p=0.56; white194 (169, 218), AA 144 (96, 

191); others 229 (113, 344), p=0.14. Univariable 

analysis indicated TSBI increased with age in 

outpatients & with poor performance. Cancer 

primary site groups (PSG), gender & race were not 

related to TSBI. Age, ECOG PS & patient location 

remained significant in multivariable analysis. 

Conclusions: Older age, out-patient location status, 

& poor performance were independently related to 

high TSBI. PSG, gender, & race had relationship to 

TSBI. The technique of SBI remains a research tool, 

but one with potential clinical importance. Symptom 

burden can be a clinically useful construct in 

outcomes where symptom profiles are important. 



Experiences with Patient Reported Outcome 

Measures in Palliative Care - Results from an 

International Online Survey 

Bausewein C. 1,2 , Simon S.T. 1,2 , Benalia H. 1 , Daveson B. 1 , 

Harding R. 1 , Higginson I.J. 1 , on behalf of PRISMA 



Rehabilitation, London, United Kingdom, 2 Deutsche 

Gesellschaft für Palliativmedizin e.V., Berlin, 

Germany 

Aim: To describe the use and experiences of 

professionals working in palliative care with patient 

reported outcome measures (PROMS) in clinical care, 

audit and research. 

Methods: International online survey with 

professionals (doctors, nurses and other professionals) 

in palliative care with a specially-developed 

questionnaire on general use of PROMS, reasons for 

use, advantages and disadvantages, characteristics of 

the ideal measure and ideas for the development of 

training material. Invitation of participants via 

national palliative care organisations, chairs and 

other researchers in Europe and POS- database of 

PROMS users. 

Results: 495 participants from 21 countries with a 

participation rate of 38% (495/1291) and a 

completion rate of 63% (311/495). 63% female, 

average age 46 years (SD 9), experience in palliative 

care > 5 years 65%. 73% of participants had a clinical 

background, 9% were researchers, and 19% both. 

338/495 (68%) had experience using PROMS. 80% 

used them in clinical care/audit and 42% in research. 

A wide variety of scales are used with no one being 

dominant. Better assessment of patients and 

improvement of quality of care were the most 

important advantages. Problems when using PROMS 

were lack of time and of resources, lack of guidance 

and training for professionals, patients’ physical 

status and PROM complexity. In research, additional 

challenges were data analyses and dealing with 

missing data. The respondents agreed that ideal 

PROM contains 6 - 10 questions and covers physical 

and psychosocial aspects. Future development should 

focus on translation and adaptation of existing tools, 

modular systems for PROMS and international 

collaboration. 

Conclusion: PROMS seem to be used more often 

than anticipated in clinical care. Professionals ask for 

more training and guidance on how to use PROMS. 

This study is part of the PRISMA project funded by the 

Framework 7 of the EC (Health-F2-2008-201655). 



I Have Now Died: Patient and Family Carer 

Assessment of Symptoms and Other Concerns 

in Last Year of Life with Parkinson’s and 

Related Neurological Conditions Living at 

Home 

Saleem T.Z. 1 , Higginson I.J. 1 , Martin A. 2 , Leigh N. 3 



College Hospital, Neurology, London, United 

Kingdom, 3 King’s College London, Clinical 

Neuroscience, London, United Kingdom 

Background: Hardly any prospective studies exist 

on Parkinson’s and related neurological conditions of 

MSA, PSP about their own and carers (proxy) 

assessments of symptom burden and concerns during 

last year of life. 

Aim: To examine both patients and family carer 

assessments of symptom prevalence, severity and 

other concerns during last year of life. 

Methods: Reported in another paper, longitudinal 

follow up (started June 2007) of cohort of 55 patients 

and their family carers living with advanced 

Parkinsonism. A number of assessment tools 

including palliative care POS and POS-S and quality of 

life. Patients and carers were interviewed separately at 

home on the same day. 

Results: Preliminary analysis of baseline data (up to 

10 months prior to death) of those patients who have 

so far died (n =12) and their paired family carers 

(n=12) are reported here. All patients had advanced 

disease (H& Y stage, mean = 4.7), had problems with 

mobility and needed help with self care, disease 

duration (mean = 8.1). Mean age patient = 70.1, carer 

= 67.9. Half of patients and carers were female. Mean 

number of physical symptoms measured by POS-S 

from patients perspective was 12.1 (S.D = 4.4). This 

was slightly less than reported by carers 14.2 (S.D = 

3.5). Symptoms rated as severe included fatigue 75%, 

communication difficulties 50%, Pain 42%, falls 36%, 

constipation 34% and swallowing 33%. Generally 

there was agreement between patient and carer 

ratings on symptoms present however there were 

some differences in ratings of severity. POS mean total 

score for patient own assessment was 14.6 (S.D = 8.1) 

this was slightly less than carer ratings 17.3 (S.D = 5.8). 

Conclusion: This is the first study to capture both 

patient and their carer assessments of symptom 

burden and other concerns using POS prior to death 

in Parkinsonism. Carers tended to rate symptom 

burden and other concerns similarly to patients. 

However, there were some differences in severity 

ratings on some items. 



A Systematic Review Examining Verbal 

Descriptors of Cancer Induced Bone Pain 

Todd A.M. 1 , McHugh G.S. 2 , Smith L.N. 3 , Fallon M.T. 4 , 

Laird B.J.A. 5 

1 University of Edinburgh, Palliative Medicine, 


Glasgow, United Kingdom, 2 University of Edinburgh, 

Medical School, Centre for Population Health 

Services, Edinburgh, United Kingdom, 3 University of 

Glasgow, Faculty of Medicine, Nursing and 

Healthcare, Glasgow, United Kingdom, 4 University of 

Edinburgh, St Columba’s Hospice Chair of Palliative 

Medicine, Edinburgh, United Kingdom, 5 European 

Palliative Care Research Centre, NTNU, Clinician 

Scientist, Edinburgh, United Kingdom 

Aim: Cancer Induced Bone Pain (CIBP) is the most 

common cause of pain in cancer and diagnosis can be 

challenging. Words such as dull or aching are often 

associated with CIBP. Accurate identification of verbal 

descriptors may assist in prompt diagnosis of CIBP. 

The aim of this systematic review was to examine the 

literature on verbal descriptors of CIBP. 

Methods: The following databases were searched: 

British Nursing Index (1994-2010), the Cochrane 

Database of Systematic Reviews (2010), Embase (1996- 

2010) and Medline (1996-2010). The search terms 

used were “cancer, bone, pain, descriptors, assessment 

and combinations of these”. Eligible studies had to 

examine verbal descriptors of cancer induced bone 

pain. Following abstract review, relevant articles were 

appraised using a tool developed by the Scottish 

Intercollegiate Guidelines Network (SIGN). 

Results: 52 articles were identified. Only 2 articles 

met eligibility criteria. Study one was examined 55 

patients; mean age 63.5 years. Patients completed the 

Brief Pain Inventory (BPI) and the McGill Pain 

Questionnaire (MPQ). The most common descriptors 

were annoying (42%), gnawing (38%), aching (38%) 

and nagging (38%). The patients had a median 

average pain of 4 and a median worst pain of 7 (0- 

11NRS) Study 2 examined 98 patients; median age 62 

years. Patients completed the BPI and the S-LANNS 

(Self-report Leeds Assessment of Neuropathic 

Symptoms and Signs). 17% of patients with bone pain 

had neuropathic features in their pain. Those with 

neuropathic elements had a higher worst pain of 8.3 

(SD1.7) (NRS) compared to a worst pain of 7.0 (SD 2.0) 

(NRS) in those who did not. 

Conclusion: CIBP is described as ‘dull’ or ‘aching’ 

but CIBP can feature neuropathic components 

described as ‘annoying’ and ‘gnawing’. It is evident 

that verbal descriptors of CIBP have not been 

examined in a robust, systematic fashion. Future 

studies are needed to identify verbal descriptors of 

CIBP. 



Development of a Clinical Aid for Routine 

Assessment of Symptoms and 

Multidimensional Outcomes in Palliative 

Care: Development of the POS/POS-S Score 

Card 

Antunes B. 1 , Ferreira P.L. 1 , Harding R. 2 , Higginson I. 2 

1 Centro de Estudos e Investigação em Saúde da 

Universidade de Coimbra (CEISUC), Coimbra, 

Portugal, 2 King’s College London, Cicely Saunders 

Institute, Department of Palliative Care, Policy and 


Introduction: Advanced cancer patients are 

polysymptomatic. We aimed to develop a simple, 

user-friendly clinical score card as an aid to using the 

Palliative Care Outcome Scale (POS) and the Palliative 

Care Outcome Scale - Symptoms (POS-S) in palliative 

care teams, to provide simple means to routine 

assessment and management of patients’ problems. 

Methods: A protocol of five phases was designed in 

order to develop and promote the use of the POS/POS- 

S in daily practice. 

Phase 1: investigating existing booklets and/or 

brochures to decide overall layout for the booklet and 

card. 

Phase 2: an international workshop for European 

health care professionals to gather relevant 

information for inclusion in booklet and card and 

development of a digital version. 

Phase 3: revision of booklet content by 

multiprofessional users. 

Phase 4: new format of the card for better acssess to 

information and overall evaluation by health care 

professionals and academics. 

Phase 5: production of paper final version and upload 

of digital final version. Booklet and card were printed 

and distributed in palliative care facilities in Portugal, 

as well as uploaded in english and portuguese. 

Results: After 5 phases the booklet contains 10 topics 

divided in sections and the score card is removable. 

The printed version is portable, clear and simple. The 

digital version is also versatile and allows 

downloading the entire booklet, cards and score 

sheets in PDF format. 

Discussion: We have developed a user friendly 

clinical tool to enable implementation of outcome 

measures use in routine daily practice. Other outcome 

measures might benefit from this approach of 

developing a booklet and a score card for routine 

practice. 

PRISMA is funded by the European Commission’s 

Seventh Framework Programme (contract number: 

Health-F2-2008-201655) 



Developing a Spiritual Wellbeing Measure for 

Cancer Patients Receiving Palliative Care - A 

Multi-cultural Study 

Young T.E. 1 , Vivat B. 2 , Efficace F. 3 , Arraras J. 4 , 

Sigurðardóttir V. 5 , Asgeirsdottir G.H. 5 , Bredart A. 6 , 

Constantini A. 7 , Kobayashi K. 8 , Singer S. 9 , on behalf of 

EORTC Quality of Life Group 

1 Mount Vernon Cancer Centre, Lynda Jackson 

Macmillan Centre, Northwood, United Kingdom, 

2 Brunel University, Health Sciences & Social Care, 

Brunel, United Kingdom, 3 Italian Group for Adult 

Hematologic Diseases (GIMEMA), Health Outcomes 

Research Unit, Rome, Italy, 4 Hospital of Navarre, Dept 

of Oncology, Pamplona, Spain, 5 National University 

Hosptial, The Palliative Care Unit, Reyjkavik, Iceland, 

6 Institut Curie, Psycho-Oncology Unit, Paris, France, 

7 Sapienza University of Rome, Psycho-Oncology Unit, 

Sant’Andrea Hospital, Rome, Italy, 8 Saitama 

International Medical Center, Dept of Respiratory 

Medicine, Hidaka-city, Japan, 9 Universität Leipzig, 

Dep Medical Psychology, Faculty of Medicine, 

Leipzig, Germany 

Background: Spiritual care interventions to help 

patients with advanced cancer are an important part 

of end of life care. Evaluating these will require 

validated measures which are suitable for use in a 

multicultural society. 

Aim: To develop a measure of spiritual wellbeing for 

use in patients receiving palliative care. 

Method: Following guidelines ; a literature search 

plus patient and professional interviews were used to 

identify issues. The issues were rephrased as items for 

pre-testing and pilot testing in larger samples of 

patients. Collaborators from 10 European countries 

plus Japan were involved across the stages and 

particular attention was paid to translation and 

linguistic/cultural differences from the beginning of 

the project . 

Results: 84 issues were derived from a literature 

review and interviews with 22 patients and 22 

professionals from 7 European countries including 

Austria, the Netherlands, Belgium and Croatia. 

Following pre-testing in the UK, Iceland and Italy 38 

items were pilot tested on 113 patients from UK, 

Spain, France, Germany, Iceland, Italy and Japan to 

create a final version, SWB 36. There are 4 

hypothesised domains; relationship with self, 

relationship with others, relationship with a greater 

power and existential concerns. Some cultural 

differences have been identified and an international 

field study is in preparation to validate the scale 

structure and explore these in more detail. The 

module is functional, enquiring about how patients 

utilise their beliefs rather than the substance of their 

beliefs. Administration of the instrument prompted 

many patients to discuss issues, suggesting it has 

interventional properties in addition to measurement 

properties. 

Conclusions: Involvement of collaborators from 

non-English speaking countries and a rigorous 

development process has led to a measure that is 

acceptable to patients across a range of cultures. The 

measure also acts as a tool to facilitate discussion on 

spirituality with patients. 



Are We Heading in the Same Direction? 

Doctors’ and Nurses’ Views Regarding 

Outcome Measurement in Palliative Care: 

Results from an International Online Survey 

Daveson B. 1 , Bausewein C. 1,2 , Simon S.T. 1,2 , Benalia H. 1 , 

Downing J. 3 , Harding R. 1 , Higginson I.J. 1 , on behalf of 

PRISMA 


Department of Palliative Care, Policy & Rehabilitation, 

London, United Kingdom, 2 Deutsche Gesellschaft für 

Palliativmedizin e.V., Berlin, Germany, 3 African 

Palliative Care Association, Kampala, Uganda 



Aim: To describe and compare the views of doctors 

and nurses in palliative care regarding outcome 

measurement for clinical, audit and research 

purposes. 

Methods: International online survey of those 

working in palliative care in Europe and Africa. 

Respondents were identified through national 

palliative associations and additional databases. 

Results: 196 doctors, 51% male, mean 47 years; 104 

nurses, 84% female, mean 45 years responded. 

Doctors’ most common reported reasons for not using 

tools were time constraints followed by lack of 

training. For nurses it was lack of training followed by 

time constraints. Information and guidance about 

how to use tools influenced doctors and nurses. The 

majority of all respondents reported favourable 

experiences of outcome measurement. For both, the 

three most important tool elements were: physical, 

psychological, and experiences of service. Both 

ranked patient-reported outcome measures (PROMS) 

as higher in priority than carer/staff versions. For 

clinical purposes, the main advantage for doctors was 

to understand patient/family needs (e.g. assessment); 

for nurses it was clinical decision making. In practice, 

results were documented, discussed in clinical 

meetings, and informed treatment/care. For research, 

doctors were most influenced about which tool to use 

by its comparability with national/international 

literature followed by validation in palliative care. For 

nurses, validation in palliative care was followed by 

tool access. 

Conclusion: Doctors and nurses share similar views 

and practices regarding outcome measurement. The 

need for information and guidance regarding tool use 

is important and influential, and time is a 

consideration. PROMS and measurement of various 

elements are a priority in palliative care. These 

findings can be used to inform multidisciplinary 

education and training initiatives, and decisions 

regarding tool availability and construction. 

PRISMA project funded by the FP7 of the EC Health- 

F2-2008-201655 



Zarit Burden Interview - Validating for the 

Portuguese Population in the Field of 

Domiciliary Palliative Patient Care 

Ferreira M.D.F. 1 , Pinto A. 2 , Laranjeira A. 3 , Pinto A.C. 4 , 

Rosa B. 2 , Esteves C. 1 , Pereira I. 2 , Nunes I. 2 , Miranda J. 2 , 

Fernandes P. 5 , Miguel S. 2 

1 Centro de Saúde de Odivelas, Odivelas, Portugal, 

2 Centro de Saúde de Odivelas, Nursing, Odivelas, 

Portugal, 3 Centro de Saúde de Odivelas, Family 

Medicine, Odivelas, Portugal, 4 Centro de Saúde de 

Odivelas, Psychology, Odivelas, Portugal, 5 Technical 

College of Social Work, Odivelas, Portugal 

Objective: Validating the Zarit’s scale (“Zarit Burden 

Interview”) for the Portuguese Population in the field 

of domiciliary palliative patient care. 

Methodology and sampling: Translating the 

Zarit’s scale to Portuguese and retranslating it to 

English for comparison; Applying the Delphi 

Technique to a set of clinical expert reviewers; 

Applying the scale to a sample of 104 palliative 

patients caregivers, scattered throughout the country. 

Results: The internal consistency evaluation was 

performed using the Cronbach’s Alpha, the value 

obtained was 0,884. The total of the average scores in 

the Zarit’s Scale for this group of caregivers was 37,26, 

a value pointing to moderate overload. 

Conclusion: The “Zarit Burden Interview” (overload 

scale) has good psychometric caracteristhics, reason 

to applying it in the context of domiciliary palliative 

care in the Portuguese population. 

Keywords: Domiciliary Palliative Care; Burden; 

Caregiver; Zarit Scale. 

Portuguese Association of Palliative Care / Research 

Grant Elizabeth Levy 



User-friendliness of Observation Scales 

Instruments for Assessing Sedation Depth 

Gootjes J.R. 1 , Brinkkemper T. 2 , Stam E. 3 , Rietjens J. 4 , Swart 

S. 4 , Ribbe M. 5,6 , Deliens L. 6,7 , Zuurmond W.W. 1,6,8 , Perez 

R.S. 1,2,6 

1 Hospice Kuria, Amsterdam, Netherlands, 2 VU 

University Medical Center and EMGO Institute for 

Health and Care Research, Anesthesiology, 

Amsterdam, Netherlands, 3 Hospice Alkmaar, 

Alkmaar, Netherlands, 4 Erasmus MC, University 

167 


(Friday)


(Friday) 


Medical Center, Public Health, Rotterdam, 


Institute for Health and Care Research, Nursing Home 

Medicine, Amsterdam, Netherlands, 6 Center of 

Expertise Palliative Care, Amsterdam, Netherlands, 

7 VU University Medical Center, EMGO Institute for 

Health and Care Research, Public and Occupational 

Health, Amsterdam, Netherlands, 8 VU University 

Medical Center, Anesthesiology, Amsterdam, 

Netherlands 

Research aims: Proportional administration of 

palliative sedation used to alleviate unbearable 

refractory symptoms at the end of life, may be 

improved by measuring the depth of the sedation. 

The aim of the study is to assess nurses’ opinions 

about the applicability of observational scales 

assessing the depth of sedation. 

Methods: Raters from 3 high care hospices using 

depth of sedation observation scales in a clinimetric 

study were asked to choose the easiest to use, least 

time consuming and clearest instrument out of the 

following three: the Minnesota Sedation Assessment 

Tool (MSAT), the Vancouver Interaction and 

Calmness Scale (VICS) and the Richmond Assessment 

and Sedation Scale (RASS). 

Results: Seventy-nine ratings with 25 patients under 

palliative sedation were performed by 34 raters. The 

RASS instrument was considered the easiest to be used 

in the majority of ratings (59.5%). Both the RASS 

(38,7%) and the MSAT (37,3%) received an equal 

number of votes with regard to the clarity of the 

instrument. The MSAT was considered the least time 

consuming (45,2%) in the majority of ratings. For all 

evaluations the VICS received the least number of 

votes. 

Conclusion: Both the RASS and the MSAT appear to 

be the most user friendly instruments according to 

the majority of raters, possibly due to the fact that 

both observation scales are shorter and more concise 

than the VICS. Whether this coincides with better 

performance in terms of clinimetric properties 

(validity and reliability) remains to be determined. 



Can a Score Predict a Hospitalisation in a 

Palliative Care Unit? 

Pautex S. 1 , Déramé L. 1 , Matis C. 1 , Guisado H. 1 

1 University Hospital of Geneva, Collonge-Bellerive, 

Switzerland 

Purpose and background: Hospital palliative care 

teams are often involved in coordination of care, to 

ensure that patients are in the best place of care and 

sometimes participate in the decision to transfer a 

patient to a palliative care unit (PCU). In that context, 

the Pain and Palliative Care Consultation Team 

(PPCCT) working in the department of Rehabilitation 

and Geriatric has adapted an existing list with 

different levels of rating with the admission’s criteria 

of the PCU. This checklist is systematically completed 

at each consultation that concerns the orientation of 

a patient. 

The objective is to measure whether a score can 

predict an admission in a palliative care unit and what 

criterias are most appropriate. 

Method: Prospective study with systematic inclusion 

of all consultations for orientation of a patient. The 

checklist contains among others, the diagnosis, 

assessment of symptoms, the burden of care, ethical 

issues and relatives. 

Intermediate results: 69 patients included (30M - 

39 W, mean age 81.8 ± 8.7). Most had cancer (n = 60). 

14 patients had uncontrollable pain despite the use of 

opiates, 60 patients had physical symptoms (other 

than pain) not adequately controlled, 55 patients had 

poorly controlled mental symptoms; ethical 

difficulties were named in 15 cases and 23 relatives 

were perceived as having difficulties. 54 patients were 

able to participate to the decisions and only 47 gave 

their formal agreement for a transfer. 41 patients were 

transferred to a USP, 12 patients to a long term care 

unit, 10 died in the unit and 6 patients were able to 

return home. Patients transferred to a PCU had a 

mean score on the checklist of 36.3 ± 11.3 compared 

to 27.4 ± 17.3 (P = 0.02). Taken independently, only 

the physical symptoms were associated with a transfer 

to USP (P = 0.002). 

Conclusion: The intermediate results encourage us 

to continue to use such a tool to ensure use of 

palliative care beds is the most optimal. 


Withdrawn 



Assessing Antecedent Conditions for 

Developing PC in Long Term Care: Tools and 

Key Findings 

Kelley M.L. 1 , Kaasalainen S. 2 , Brazil K. 3 , Gaudet A. 4 , 

McAnulty J. 1 

1 Lakehead University, School of Social Work, Thunder 

Bay, ON, Canada, 2 MCMaster University, School of 

Nursing, Hamilton, ON, Canada, 3 McMaster 

University, Department of Family Medicine, 

Hamilton, ON, Canada, 4 Lakehead University, Centre 

for Education and Research on Aging and Health, 

Thunder Bay, ON, Canada 

Purpose: In Canada, approximately 39% of residents 

die in long-term care (LTC) homes each year. 

However, most LTC homes lack formalized palliative 

care (PC) programs that address the holistic aspects of 

care for residents and their family members. 

LTC funding, legislative and compliance regulations 

contribute to structural challenges to providing PC in 

LTC. The broader societal culture in which dying is 

regarded as a medical event rather than accepted an 

normal life event poses further challenges. A four 

phase community capacity building model-having 

antecedent conditions, experiencing a catalyst, 

creating the team and growing the program- is being 

used as a theory of change to modify the culture of 

LTC homes and develop PC programs. 

Methods: Participatory action research 

methodologies were used to cpmplete a 

comprehensive environmental scan of the antecedent 

conditions of 4 LTC homes in Ontario, Canada. 

Results: The results illuminated existing antecedent 

conditions in each home. Improving the comfort and 

quality of care for residents at the end-of-life was a 

shared vision for change amongst all staff groups, 

however staff across all discipline did not feel 

empowered to influence organizational change. 

Teamwork and communication were challenges due 

to low staffing levels, scopes of practice and the 

professional hierarchy of staff. 

Conclusion: The success and sustainability of the PC 

programs will be influenced by the capacity of each 

organization in relation to the antecedent conditions. 

According to the model, strengthening these 

antecedent conditions is important as a foundation for 

developing a PC team. The LTC home can use the 

results to develop and prioritize educational, clinical 

and policy related interventions. Community resources 

can be engaged to help support the process and 

augment the care given to residents at the end of life. 

Funding for this program of research is provided by 

the Social Sciences and Humanities Research Council 

of Canada. 



Using the Palliative Performance Scale to 

Provide Meaningful Survival Estimates in 

Patients in NHS Grampian 

Lawton S. 1 , Linklater G. 2 , Macaulay L. 2 , Carroll D. 2 , Pang 

D. 3 

1 NHS Grampian/University of Aberdeen, Department 

of Palliative Medicine, Aberdeen, United Kingdom, 

2 NHS Grampian/University of Aberdeen, Aberdeen, 

United Kingdom, 3 University of Aberdeen, Division of 

Applied Health Sciences, Aberdeen, United Kingdom 

Background: The national action plan for palliative 

and end of life care in Scotland 1 recommends the use 

of the palliative performance scale (PPS) to assess 

palliative patients. The PPS contains 5 elements: 

ambulation, activity and evidence of disease, self-care 

ability, oral intake and conscious level. A score is 

allocated using an 11 point scale (100% = fully fit - 0% 

=death) 2 . The literature suggests that an initial 

assessment with the PPS may be used to assist in 

prognostication across different palliative groups 3 . 

The PPS has been used in a range of different palliative 

care settings, but there is no published data relating to 

a Scottish population. 

A prospective audit was undertaken to assess the 

introduction and use of the PPS in 15 different 

settings in primary and secondary care settings in the 

North-East of Scotland. 

Results: 675 patients were assessed using the PPS. 

Fifteen sites were included representing the acute 

sector, specialist palliative care, primary care settings 

and nursing homes. 

The poster presents median survival data for palliative 

patients in NHS Grampian, comparing the findings 

with published survival data 4 . 

Conclusion: The PPS does have a role in assessing 

functional status in patients with a poor prognosis, 

but survival data from palliative patients in the Northeast 

of Scotland differs from the published literature. 

References: 

1. Living and Dying Well: A National Action Plan for 

Palliative and End of life Care. (2008) Scottish 

Government, Edinburgh 

2. Anderson F, Downing M and Hill J.( 1996) Journal 

of Palliative Care 12 (1) 5-11 

3. Olajide O, Hanson L. et al (2007) Validation of the 

palliative performance scale in the acute tertiary care 

hospital setting Journal of Palliative Medicine 10 (1) 

111-117 

4. Lau F, Maida V. et al (2009) Use of the Palliative 

Performance Scale (PPS) for end-of-life 

prognostication in a palliative medicine consultation 

service Journal of Pain and Symptom Management 37 

(6) 965 - 972 



The Job Diagnostic Survey in an Inpatient 

Palliative Care: An Exploratory Study 

Trindade N. 1 , Costa Dias M.J. 2 , Feijão Rodrigues C.P. 2 , 

Pereira S.M. 2 

1 Hospital da Luz, Unidade Cuidados Continuados e 

Paliativos, Lisboa, Portugal, 2 Hospital da Luz, Lisboa, 

Portugal 

There has always been in Palliative Care a great 

concern with the satisfaction the professionals feel, 

given how physical and psychologically demanding 

this area could be for the workers. 

For managers this concern is very relevant, as it is 

necessary to constantly evaluate and adjust work 

characteristics so to prevent lack of motivation, 

decreases in quality and burnout of the professional 

caregivers. 

As such, the main purposes of this study were to 

evaluate the level of satisfaction amongst the 

professional caregivers of an Inpatient Palliative Care 

Unit, in a Lisbon private hospital; to analyze the 

personal perceptions each of the professionals had 

about the 5 core dimensions of their tasks, as it is 

possible to do with the Job Diagnostic Survey (JBS), 

being those components the Skill Variety (SV), the 

Task Identity (TI), the Task Significance (TS), the 

Autonomy (A) and the Feedback (F); and to evaluate 

the Motivating Potential Score (MDS) the analyzed 

tasks had. 

It was conducted an exploratory descriptive 

quantitative study, by applying the Portuguese 

version of the JDS, validated by Basto (1995), to 22 

nurses and 17 auxiliary personnel, all working for 

more than six months in the Unit. 

This survey was designed to be applied in any given 

job and it has already been applied in the health 

professions context in Portugal (Rebelo, Teixeira e 

Madeira, 1990; Basto, 1998; Mártires, 2007), but not in 

Palliative Care. As such, it was chosen for this study, 

because it seemed the more adequate to apply in an 

exploratory study. The results we have so far show us 

that the mean MDS is 79,81. To the core dimensions 

we have that for SV the mean is 4,5 and the mode is 5. 

For TI the mean is 4,1 and the mode is 4. For TS the 

mean is 4,9 and the mode is 5. For A the mean is 3,9 

and the mode is 4. At last, for F the mean is 4,4 and the 

mode is 4,3. We intend to discuss differences between 

the two professional categories and the relevance of 

each core dimension for each category. 



Results of the Use of the Patient-generated 

Subjective Global Assessment (PG-SGA) in a 

Palliative Care Outpatient Service in Brazil 

Faria S.O. 1 , Chiba T. 1 , Cury P. 1 , Cardenas T. 2 , Rodrigues 

N. 2 , Camacho-Lima S. 2 

1 São Paulo Cancer Institute, Palliative Care, São Paulo, 

Brazil, 2 São Paulo Cancer Institute, Nutrition, São 

Paulo, Brazil 

Introduction: Progressive nutritional deterioration 

is common in patients with cancer, specially in a 


Objective: To compare the use of different 

nutritional access tools (anthropometry X PG-SGA ) 


in patients with cancer receiving palliative care at the 

São Paulo Cancer Institute -ICESP, Brazil. 

Methods: It was performed a retrospective study. 

BMI (Body Mass Index) and PG-SGA were collected 

from medical records of all outpatients with cancer 

from june to september 2010. Nutritional status was 

classified according to World Health Organization 

(1998) - for adult patients and Pan-American Health 

Organization (2002)- for elderly subjects. 

Results: Eighty three patients (51.0% male, aged 

63.32±11.8 years) were evaluated. Most of them 

(51,8%) were classified as severely malnourished and 

32.5% as moderately (or suspected of being) 

malnourished according to PG-SGA. When classified 

by BMI, 72.2% were underweight. Among the patients 

considered normal weight/ overweight or obese by 

BMI, 56,5% were classified as severely or moderately 

(or suspected of being) malnourished by PG-SGA. The 

medium score of PG-SGA was 14,89 ±4,87. 

Conclusion: PG-SGA detected malnourished 

patients or at nutritional risk that was considered well 

nourished by BMI, characterizing an important tool 

for assessing nutritional status in palliative patients, as 

it takes account of the symptons. 



Measuring Patient Outcomes through Holistic 

Rehabilitation Processes - The Wheel of Life 

Burnett J.D. 1 , Blagbrough M.E. 1 , Needham P. 2 , di 

Castiglione J.A. 3 , Assessment and Measurement Tools 

1 Dorothy House Hospice Care, 

Physiotherapy/Occupational Therapy, Bradford on 

Avon, United Kingdom, 2 Dorothy House Hospice 

Care, Medical Directorate, Bradford on Avon, United 

Kingdom, 3 Dorothy House Hospice Care, Projects, 

Bradford on Avon, United Kingdom 

Dudas (1984) defined rehabilitation in Oncology as 

“the dynamic process directed towards the goal of 

enabling a person to function at the maximum level 

of their disease or disability in terms of their physical 

mental, emotional, social and economic potential”. 

Therefore functioning in each of these domains 

should be measured. 

As part of initiating the Dorothy House COPE 

Palliative Rehabilitation course (a 6 week course 

aimed at maximising potential through education, 

exercise and relaxation) the team investigated 

appropriate holistic outcome tools suitable for use in a 

specialist palliative care population. 

The Wheel of life (WoL) - (Mind Tools, 2006) helps 

the individual focus on different areas of their life and 

then directs attention to those aspects which might be 

improved, despite debilitating diagnoses and 

prognoses. 

The wheel, a visual tool, is divided into eight domains 

(spirituality, finance, environment, relationships, 

role, health, recreation and intellectual focus) each 

being scored on a scale (0-5). Patients plot an initial 

wheel of their current situation then, with 

standardised cues, plot a second wheel of their 

aspirations. An individual but realistic goal setting 

plan is set with a clinician using the differential 

between the two plotted wheels. It is used at the initial 

and post course assessments. The same assessor 

repeats the test for consistency. 

Results with 36 patients taken onto the rehabilitation 

courses showed 

· 32 patients completed two WoL 

· 3 patients did not complete the second 

· 24 (75%) improved their score (range +1 to +13) 

· 1 score equivocal 

· 7 (22%) scores decreased (range -0.5 to -70) 

In other processes of evaluation used alongside the 

WoL patients have volunteered qualitative evidence. 

This tool would seem to be patient friendly and an aid 

to realism. 

Therapeutic clinician/ patient relationships have also 

been achieved early on in the assessment process 

enabling cooperation and realistic planning. 



Testing the Reliability of a Prioritisation Tool 

for Inpatient Referrals to Specialist Palliative 

Care in a Busy Dublin Teaching Hospital 

Howard M. 1 , Wilkinson R. 1 , O’Hanlon M. 1 , Corcoran C. 1 , 

O’Siorain L. 1 , Kelly S. 1 

1 St. James’ Hospital, Palliative Care, Dublin, Ireland 

Background: The number of referrals for inpatient 

Specialist Palliative Care has increased significantly in 

St. James’ Hospital. In 2009 there were over 1000 

referrals to the service. With the ongoing increase in 

inpatient referrals there is an urgent need for more 

staff in the Palliative Care department. 

Objective: We developed a scoring system based on 

several patient criteria in order to prioritise our 

referrals. We sought to identify at an early stage those 

patient referrals which had a definite need for 

specialist inpatient Palliative care involvement. Our 

aim in this audit was to ensure that Palliative doctors 

and specialist nurses would assign similar scores to 

patients at different times. 

Method: In order to test the reliability, we collected 

sequential scores from 50 patients. The Palliative 

registrar/consultant would see the referral for the first 

time and assign a patient score. After this (any period 

from 1 - 10 days later) the patient would be reviewed 

by the specialist nurse and another score assigned 

using the same criteria. Scores are based on reason for 

referral, symptom control, psychosocial distress (of 

both patient and family), estimated prognosis and 

need for rapid discharge. 

Results: Allowing for changes in patient conditions 

over short periods of time (eg if patient becomes 

suddenly unwell), the scoring system we developed 

showed consistent scores between first patient review 

by doctors and follow up review by specialist nurses. 

Conclusions: The scoring system we developed 

shows consistency scores assigned between team 

members involved with the same patient over time. 



Sexuality after Cancer in Women: A Pilot 

Study from Iran 

Tahmasebi M. 1 

1 Tehran University of Medical Sciences, Cancer 

Institute, Tehran, Iran, Islamic Republic of 

Cancer or treatments greatly affect sexuality 

in women. Physical or psychological problems 

impair sexual function.Ignoring discussion 

about sexuality with patients by health care 

providers may raise their sufferings. 

The aim of this study was to explore if the 

cancer patients have received any 

information about potential sexual problems. 

The study was done through face-to-face 

interview with twenty women with cancer 

who were admitted in the oncology ward for 

chemotherapy. 

Despite the high rate of sexual complications 

in cancer patients, none of them were 

informed by health care providers. 

Sexual Problems: 

Low sexual desire 5(25%) 

Dyspareunia 10(50%) 

Vaginal dryness 11(55%) 

Vaginal bleeding 4(20%) 

Cancerophobia of the spouse 3(15%) 

Frequency of sexual problems in women with 

cancer needs more attention of health care 

providers. Effective communication and 

discussion about sexuality would be the first 

priorities for helping these patients. 



Preliminary Experience with the Use of the 

Polish Version of the Sheffield Profile for 

Assessment and Referral for Care (SPARC) - A 

New Method of Quality of Life Assessment in 


Leppert W. 1 , Stelcer B. 2 , Ahmedzai S.H. 3 , Ahmed N. 4 

1 Poznan University of Medical Sciences, Chair and 

Department of Palliative Medicine, Poznan, Poland, 

2 Poznan University of Medical Sciences, Departmet of 

Psychology, Poznan, Poland, 3 Sheffield Hallam 

University, Academic Unit of Supportive and 

Palliative Care, Sheffield, United Kingdom, 4 Sheffield 

Hallam University, Sheffield, United Kingdom 

Background: SPARC is devoted to quality of life 

(QL) assessment in patients with advanced diseases. It 

comprises 45 questions regarding communication, 

physical symptoms, psychological issues, spiritual 

and existential problems, activity, family and social 

issues, treatment and personal affairs referring to the 

last month. In addition patients may express other 

concerns and ask three questions to professionals. The 

aim of the study was to assess the usefulness of the 

Polish version of SPARC in the assessment of QL in 

patients with advanced diseases. 



Material and methods: Questionnaire survey of 

120 patients with advanced diseases: 60 advanced 

cancer patients treated at palliative care in-patient 

unit (20 patients), home hospice (20 patients) and day 

care centre (20 patients) and 60 patients with 

advanced non-malignant diseases (mostly 

neurological) treated at nursing home. 

Results: Most of the surveyed in both cancer and 

non-malignant group highly appreciated the 

possibility of using questionnaires. In spite of the fact 

that the questionnaire is quite long patients surveyed 

answered all questions asked. Cancer patients 

expressed more often their will to know more about 

disease and discuss it with professionals. Patients with 

chronic diseases expressed more often problems in 

every day activity. However, both groups 

demonstrated several problems in all dimensions. 

Conclusions: SPARC is a useful tool for assessing QL 

in both cancer patients and those with nonmalignant 

diseases. The advantage of SPARC is the 

possibility of deeper exploration of patient needs 

especially in the spiritual dimension. The tool was 

well accepted in both surveyed groups. 



Cancer Cachexia in Palliative Care: Pilot 

Evaluation of the SIPP Assessment Tool 

Blum D. 1 , Fearon K. 2 , Baracos V. 3 , Oberholzer R. 4 , deWolf- 

Linder S. 4 , Stone P. 5 , Radbruch L. 6 , Kaasa S. 7 , Strasser F. 4 , 

EPCRC 

1 KSSG, St Gallen, Switzerland, 2 The University of 

Edinburgh, Royal Infirmary, Edinburgh, United 

Kingdom, 3 University of Alberta, Alberta, AB, Canada, 

4 KSSG, St. Gallen, Switzerland, 5 St George’s University 

of London, London, United Kingdom, 6 RWTH 

Aachen, Aachen, Germany, 7 NTNU, Trondheim, 

Norway 

Background: Cancer cachexia is a multi-factorial 

syndrome defined by an ongoing loss of skeletal 

muscle mass that cannot be fully reversed by 

conventional nutritional support. Current nutritional 

assessment tools identify patients at risk for 

malnutrition, but do not guide cachexia managment. 

A common assessment and tool is needed to improve 

clinical care decisions, outcomes, and trial design. 

Aim: To evaluate SIPP a practice-guiding cachexia 

classification and assessment tool. 

Methods: Based on the consensus on definition, 

diagnosis and classification of cancer cachexia an 

assessment-tool (SIPP) was developed. The SIPP 

contains: Storage (gap of usual to current weight, WL 

duration), Intake (anorexia, early satiety, percentage of 

normal intake, secondary nutrition-impact symptoms 

S-NIS), Potential (tumor activity, C-reactive protein), 

Performance (Performance status, cachexia-related 

suffering, prognosis). Three phases (pre-cachexia, 

cachexia, refractory cachexia) are proposed. SIPP was 

pilot-tested for feasibility, content validity, interraterreliability 

of items/domains and interventions.Two 

physicians performed the SIPP (consultation/chart) 

and proposed preexisting decisions on cachexia 

interventions mutually blinded from each other. 

Results: SIPP assessment is feasible in daily practice 

in various clinical settings (inpatient-, outpatient- 

,cachexia-clinic). Preliminary data (n=10, age 46-72) 

show a high level of agreement in cachexia phases 

between the two independent researchers (DB, FS), 

specifically in refractory cachexia, where nutritional 

support is no longer indicated. Treatable S-NIS were 

equally detected. Agreement on multidimensional 

interventions (nutritional counselling, antineoplastic 

and pharmalogical therapy, physical activity, 

psychosocial, emotional support) was high. Further 

validation is ongoing. 

Conclusion: The SIPP can improve cancer cachexia 

assessment and guide cachexia management. Testing 

of the SIPP in a larger scale is planned. 



More Support to Reach the End 

Ruiz Castellano Y. 1 , Diaz Diez F. 1 , Julian Caballero M. 1 , 

Bonino Timmerman F. 1 , Redondo Moralo M.J. 1 , Cabo 

Dominguezl R. 1 , Peinado Clemens R. 1 , Cuervo Pinna 

M.A. 1 , Sanchez Correa M.A. 1 , Perera Menacho E. 1 

1 Servicio Extremeño de Salud, Equipo de Soporte de 

Cuidados Paliativo, Badajoz, Spain 

Objective: The aim of this study is to know the 

functional status and social support related to the 

patients included in Regional Palliative Care Program 

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in Badajoz Area. 

Method: It is a retrospective and descriptive study. 

The sample was collected individually and extracted 

by medical reports from July 2009 to June 2010. In 

order to know the functional status of the patients 

included in Regional Palliative Care Program, the 

Karnofsky Index was assessed and Barthel scale. 

Other data included in this study were: age, gender, 

social support (public, private, relatives) and the place 

where the patient is assessed the first time. (urban 

home, rural home, hospital, nursing homes). 

Results: 306 patients were included. 62.54% were 

men and 37.13% are women. The mean age was 71.12 

years. 12.79% had a functional status of 30 out of 100; 

31.36% had 40 points out of 100; 50.20% had 50 

points and 15.03% had 60 points. 

Related to the Barthel scale, 16.99% had a mild score; 

13.40% had a moderate score; 7.84% had serious score 

and 61.44% had severe score. 

Respected to the place where is included the patient 

the first time, 16.34% were assessed in rural homes, 

21.57% in urban homes, 57.84% were set in hospitals 

and 4.25% were admitted in nursing homes. 

The majority (73.53%) had only family support, 

13.73% had private support and 8.88% had public 

social support. 

Conclusions: When we assess the functional status 

related to the ability about how to carry out tha basic 

daily routine and keep their indepence and 

autonomy, we saw in our study that 240 patients had 

a Karnofsky score of 50 points or under that, 78.43% 

had a severe Barthel score 43.14%. 

Adding to that, 8.8% of the patients included had 

public support. 



A Proposal to Represent the Activities of a 

Multidisciplinary Team in a Case-study 

Nica I.G. 1 , Varga A.V. 1 

1 Fundatia Crestina Diakonia, Cluj-Napoca, Romania 

Aims: A graphic representation of patient needs, 

multidisciplinary palliative home care team 

intervention and the efficiency of this intervention in 

the case-study. 

Method: ‘Imaginary plant method.’ The needs of the 

patient are represented by the leaves of a plant. Time 

is represented by the length of the leaves, severity of 

the symptoms is shown by the width of the leaves, 

team intervention is shown by the little coloured dots 

on the leaves and each colour represents one 

discipline. However one discipline may cover more 

than one need. The bed is represented by the stems of 

the plant. This method was applied to the case which 

required the intervention of our multidisciplinary 

team. 

Results: Care was provided for the patient for a 

period of almost nine months and we made 201 visits 

covering 12 different needs. Application of the 

‘Imaginary plant method.’ will result in a plant which 

looks different for each patient. 

Conclusions: From this graphic it is immediately 

obvious which needs required more intervention and 

the efficiency or otherwise of the intervention on the 

specific need. It is also obvious which disciplines were 

required most and which symptoms could be 

influenced and how. The chart is also helpful in 

identifying weaknesses in the care and the need for 

education. 

Particularities: Interference between the needs 

sometimes affected one another in a way which 

became obvious later. Good interaction with family 

members helped with the work of care. 



Working with Teams, Involving with Teams, 

Listening to Teams. An Analysis for the 

Development of Quality Programs at the End 

of Life 

Garcia-Baquero Merino M.T. 1 , Gándara del Castillo A. 2 , 

Luengo R. 3 , Blasco Amaro J.A. 3 , Andrada E. 4 , Martínez 

Cruz M.B. 5 , Ruiz López D. 6 , Coordinacion Regional de 

Cuidados Paliativos. Consejería de Sanidad. Comunidad 

de Madrid. Spain 


Consejeria de Sanidad. Comunidad de Madrid, 

Madrid, Spain, 2 Unidad de Cuidados Paliativos 

Hospital Beata María Ana, Madrid, Spain, 3 ETS. Area 

de Investigación. Agencia Laín Entralgo., Consejería 

de Sanidad de la Comunidad de Madrid, Madrid, 

Spain, 4 Area de Investigación. Agencia Laín Entralgo, 


Madrid, Spain, 5 Coordinación Regional de Cuidados 

Paliativos, Consejería de Sanidad de la Comunidad de 

Madrid, Madrid, Spain, 6 Coordinación Regional de 

Cuidados Paliativos, Madrid, Spain 

Background: The importance and need to establish 

effective, efficient and high quality palliative care 

systems make on-going research on the professionals’ 

needs- as well as management tools and coordination 

resources they have access to- a relevant priority. 

Aim: The main aim of our study was to evaluate the 

analysis of the perceived needs of all professionals 

working in the different palliative care settings within 

a Spanish region in 2009. 

Methodology: We designed a questionnaire to 

assess available material and human resources. It was 

administered by a single observer. The category and 

number of patients registered, professionals’ training 

and continuous professional education and research 

activity as well as referral and networking processes 

were documented. Professionals’ perceptions relating 

to quality requirements were also evaluated through 

an open question about how to improve the 

coordination system at the regional level. Every 

professional from all the region’s 43 PC teams, 

including primary and hospital care, responded to the 

survey. 

Results: An initial session to identify issues from the 

item “how to improve the coordination”, was 

followed by brainstorming analysis to unify answers 

and subsequent discourse analysis to extract global 

dimensions and relationships within them. A total of 

10 main themes were clustered from 300 ideas. The 

most frequent and condensed themes were: 

unification of criteria, out of hours’ palliative care and 

the definition of coordination within and between 

teams. 

Conclusion: The results of this analysis helped 

define the main strategic lines established within the 

“Regional Palliative Care Plan” and provided a 

valuable way to assess all specialist teams. 



Discussion of a Linguistic versus Cultural 

Translation of a Questionnaire to Assess Taste 

and Smell Ability 

McGreevy J. 1 , Bernhardson B.-M. 1 , Orrevall Y. 1 , Pettersson 

K. 1 , Månsson Brahme E. 2 , Tishelman C. 1 

1 Karolinska Institutet, Dept. of Learning, Informatics, 

Management and Ethics, Stockholm, Sweden, 

2 Karolinska Universitetssjukhuset, Dept. of Oncology, 

Stockholm, Sweden 

An English language questionnaire, designed to assess 

taste and smell ability, has been used in research 

projects at the University of Alberta for several years. 

Collaboration has been initiated with our research 

group in Sweden, who are planning to use the same 

tool after translation into Swedish. Translation of an 

instrument from one language to another is complex 

and there is no standard guideline for this process. 

The most common method used for linguistic 

translation is a forward-backward translation. This is, 

however, not without its problems. A poorly 

translated target language version may be easy to back 

translate correctly to the source language, despite 

errors in the forward translation. 

It is even more problematic because a good linguistic 

translation does not necessarily ensure that questions 

in the source language will be understood in the same 

way in the target language. If an instrument is to be 

used in another culture it must not only be translated 

well linguistically, but also culturally adapted to 

maintain content validity. 

Achieving a balance between linguistic translation 

and cultural adaptation is not straightforward. The 

quality of the original instrument should not be 

altered during translation as this will not allow 

comparison between collaborating centres. Decisions 

regarding the phrasing of questions, to achieve 

cultural correctness whilst staying true to linguistic 

translation, require a thorough multi-step process. 

In this presentation, we will discuss the benefits and 

challenges we experienced with the translation 

process we used, geared to achieving a culturallyrelevant 

instrument which would remain comparable 

in English and Swedish. The translation process 

involved the investigation of cultural and linguistic 

equivalence using forward translation, a committee 

approach, content validity index and pretesting 

techniques. 



Methicillin-resistant Staphylococcus aureus 

(MRSA) Management in Palliative Care Units 

and Hospices in Germany: A Questionnaire 

Based Survey 

Bükki J. 1 , Klein J. 2 , But L. 2 , Montag T. 2 , Wenchel H.M. 3 , 

Voltz R. 2 , Ostgathe C. 1 

1 University Hospital Erlangen, Department of 

Palliative Medicine, Erlangen, Germany, 2 University 

Hospital Cologne, Centre for Palliative Medicine, 

Cologne, Germany, 3 University Hospital Cologne, 

Department of Medical Microbiology, Immunology 

and Hygiene, Cologne, Germany 

For palliative care and hospice settings, little is known 

about specific MRSA screening and eradication 

regimens. The question is how beneficial MRSA 

protocols are in this population and whether these 

regimens may be perceived as burdensome to 

patients, families and health care professionals. To 

obtain a first insight, a questionnaire based survey on 

MRSA management in German palliative care units 

(PCU) and hospices (HO) was performed. 

A questionnaire with 23 items (6 about basic 

infrastructural data and 17 evaluating the 

management process) was sent to 179 PCU and 181 

HO in Germany. Responses were compared using the 

Chi square test, a significant difference was assumed 

at p ≤ .05. 

In total, 229 questionnaires were returned (PCU 65%, 

HO 62%). Both PCU and HO usually have specific 

MRSA protocols (PCU 96%, HO 92%; p= .213). PCU 

significantly face more barriers in terms of lacking 

single rooms (PCU 15%, HO 3%; p= .002) and staffing 

(PCU 16%, HO 5%; p= .004). More often compared to 

hospices PCU test routinely for MRSA (PCU 32%, HO 

4%; p= .000), isolate MRSA patients (PCU 99%, HO 

76%; p= .000), actively treat MRSA colonization (PCU 

71%, HO 57%; p= .026), assess efficacy of eradication 

(PCU 97%, HO 61%; p= .000) and provide 

information on MRSA management to patients (PCU 

82%, HO 67%; p= .014) and relatives (PCU 99%, HO 

89%; p= .001). Patients´ activities are more frequently 

restricted in PCU (PCU 96%, HO 66%; p= .000). In 

PCU, patients´ quality of life is perceived more often 

as being negatively affected (PCU 83%, HO 55%; p= 

.000). 

MRSA protocols may impose significant burden to 

patients at the end of life and their relatives and 

friends, especially when being rigorously applied in a 

PCU setting (compared to the more “liberal” HO 

practice). More research on clinical outcomes 

including quality of life in different cohorts is needed 

in order to minimize useless and burdensome 

interventions and to identify subgroups that possibly 

benefit from MRSA eradication. 



Quality Management for Hospice and 

Palliative Care Services in Austria 

Pelttari L. 1 , Nemeth C. 2 

1 Dachverband Hospiz Österreich, Wien, Austria, 

2 Gesundheit Österreich GmbH, Geschäftsbereich 

ÖBIG, Vienna, Austria 

Aims: Since 2004 the types of hospice and palliative 

care services in Austria and their structural 

requirements are defined. The next step in the 

development focuses on the process quality to ensure 

sustainability. Aim of this project is a quality 

management manual assisting hospice and palliative 

care institutions in the designing and processing of 

their daily activities. 

Methods: For each of the six types of hospice and 

palliative care services (palliative care units, in patient 

hospices, day hospices, mobile palliative care teams, 

palliative care hospital support teams, volunteer 

hospice teams) a model process is developed for the 

following situations: · Start of Care·- Care - End of 

Care. These processes are developed by the joint effort 

of GÖG/ÖBIG (Austrian Federal Institute for Health 

Care)‚ Hospice Austria and the Austrian Palliative Care 

Association (OPG). All 250 hospice and palliative care 

institutions in Austria were invited to participate in 

this quality management project. 40 of them became 

partners in the project thus ensuring a meaningful 

outcome for the daily practice.A multiprofessional 

group of experts functioning as a quality board has 

developed the design of the project and monitors its 

progress. 

Results: The quality management manual for 

hospice and palliative care institutions provides 


model processes (consisting of flow charts, 

comments, model documents and key performance 

indicators for evaluation) and structural requirements 

(staffing, services provided) relevant for the daily 

practice. 

Conclusion: The field of hospice and palliative care 

in Austria is becoming an integral part of the Austrian 

health and social care system. It is now necessary to 

support quality consciousness in the daily practice. 

One of the keys to success is the involvement of all 

services working in the field of hospice and palliative 

care and the forming of a multiprofessional quality 

board with members from all over Austria.The project 

is funded by public funds. 



Unnecessary Prescriptions in Terminal 

Palliative Care Patients: A Retrospective Study 

of 108 Patients 

Debourdeau P. 1 , Vincent E. 2 , Chveztoff G. 3 , Sisoix C. 4 , 

Filbet M. 4 

1 Desgenettes, Oncology, Lyon, France, 2 Desgenettes, 

Gastroentrology, Lyon, France, 3 Leon Berard Center, 

Oncolofy, Lyon, France, 4 Lyon Sud Hospital, Palliative 

care, Lyon, France 

Background: The goal of palliative care (PC) is to 

improve physical, moral and spiritual comfort of 

patients with incurable disease. The rate of patients in 

terminal palliative care (TPC) with unnecessary 

prescriptions (UP), ie having no influence on 

symptoms of discomfort or on the underlying disease 

is poorly documented. We therefore conducted a 

retrospective mono centric study on UP in patients 

with TPC in a secondary care hospital. 

Materials and methods: Included patients were 

hospitalized in 2008 and 2009 for TPC. They had to 

meet the criteria of the French national health 

insurance. Analysis of qualitative variables was 

performed with the parametric test Chi2 and 

comparison of means with the variance analysis. 

Results: 108 patients were included with a mean age 

of 70 years and a mean stay of 15 days. Underlying 

disease was cancer (n=97), the other diseases were 

digestive (n=4), neurological (n=4) and respiratory 

(n=3). 49 patients were hospitalized for PC, 39 for a 

complication and 20 for a progression of their disease. 

5 patients had no UP and 103 patients had 348 UP. 

The most common UP was laboratory tests (n = 87), 

intravenous hydratation (n = 79), prophylaxis of 

venous thromboembolism (n = 47), cardiovascular 

drugs (n = 33), parenteral nutrition (n = 32), various 

drugs (n = 24), anti anemic drugs (n = 19), treatment 

for hypertension (n = 19) and anti-cancer drugs (n = 

8). The mean number of UP statistically decreases 

with the duration of stay: 2.98 1st week, 2.37 2nd, 

2.34 3rd and 1.85 4th and beyond. The number of UP 

was more important in patients hospitalized with a 

non-palliative intent (complication or progression of 

disease). 

Conclusions: This work shows a high rate of UP that 

is almost the same as this reported in literature. It 

emphazises the need for the validation of a data 

collection grid that could serve as a basis for a work on 

the decrease of UP in TPC. 



Hydration in the Dying Phase - An Audit of 

Attitudes and Current Practice amongst 

Healthcare Professionals 

Fradsham S. 1 , Mayland C. 2 , Hugel H. 2 , Renshaw J. 2 , Noble 

A. 3 , O Connor M. 4 , Cannell L. 4 , Mckenna E. 5 

1 Marie Curie Palliative Care Institute, Liverpool, 

United Kingdom, 2 University Hospital Aintree, 

Liverpool, United Kingdom, 3 Clatterbridge Centre for 

Oncology, Wirral, United Kingdom, 4 Royal Liverpool 

University Hospital, Liverpool, United Kingdom, 

5 Willowbrook Hospice, Liverpool, United Kingdom 

Aims: Within the framework of a regional audit 

programme, we aimed to:· 

Explore attitudes and current practice of specialist 

palliative healthcare professionals(HCPs) towards the 

management of hydration in the dying phase. 

Review and amend regional guidelines to help assist 

HCPs in their practice, with the ultimate aim of 

providing higher quality of patient care. 

Methodology: Following a comprehensive literature 

review on hydration within the dying phase, a 

questionnaire was developed and sent to all specialist 

palliative HCPs within the regional network. 

Results: 96 questionnaires were returned with 

representation from specialist palliative HCPs 

working in all care settings (Hospice, Hospital and 

Community). 

Thirst (n=72/75%) and concerns from the family 

(n=81/84.8%) were the factors most likely to influence 

the decision to start clinically-assisted hydration 

(CAH).· 

Dry mouth(n=49/51.4%) and decreased level of 

consciousness(n=40/42.2%) were the factors least 

likely to influence the decision· 

80(83.3%) respondents stated that increased risk of 

chest secretions was most likely to influence the 

decision not to start CAH despite there being no 

robust evidence to support this.· 

Discussions regarding CAH were more likely to take 

place with other HCPs than families or patients.· 

73(76%) respondents felt clearer guidance regarding 

this issue was needed. 

Conclusion: There is little evidence to guide HCPs 

on the use of CAH at the end of life. Despite this there 

are some misconceptions that are upheld and 

influence our decisions regarding this issue.The 

updated regional guidelines include: 

HCPs should ensure oral hydration is offered as part of 

basic care and adequate mouth care is given to all 

patients. 

Decisions regarding CAH should be individualised 

and include open discussion with patients, families 

and other HCPs. 

The appropriateness of a decision to give or withhold 

CAH in the dying phase should be reviewed on a daily 

basis. 



Attitudes and Experiences Regarding Errors 

in Palliative Care - A Survey 

Dietz I. 1,2 , Borasio G.D. 3 , Müller-Busch C. 4 , Plog A. 1 , 

Schneider G. 2 , Jox R.J. 1 

1University Hospital Munich, Interdisciplinary Center 


2University Witten/Herdecke, Helios Klinikum 

Wuppertal, Department of Anaesthesia I, Wuppertal, 

Germany, 3University of Lausanne, Centre Hospitalier 

Universitare Vaudois, Lausanne, Switzerland, 

4University Witten/Herdecke, Witten/Herdecke, 

Germany 

Aims: In the last years medical errors have been 

recognized as a relevant concern and increasing 

research efforts are made to improve patient safety. In 

palliative care, however, studies on errors are scant. 

Our aim was to gather pilot data concerning attitudes 

and experiences of palliative care professionals on this 

topic. 

Methods: We drafted a semi-quantitative 

questionnaire containing questions on incidence, 

kinds and severity of errors, their causes and 

consequences, and the way palliative care 

professionals handle them. They were sent to all 

palliative care units, hospices and specialized 

outpatient palliative care teams (n=168) in the region 

of Bavaria, Germany (12.5 million inhabitants). 

Results: The rate of return was 42% (n=70), most 

questionnaires were returned by nurses (50%, n=35). 

The importance of errors in palliative care was rated at 

8 (median) on a ten-point numeric rating. 77% of the 

professionals said that this issue was not part of their 

education at university or on the job training, and 

83% of the physicians indicated no or almost no 

education on the topic in their specialist training. 

66% of the respondents want more teaching on 

errors. 40% state that they commit errors at a 

moderate frequency (in 1-10/100 patients). Although 

in most teams committed errors can be reported 

openly, a system for anonymous reporting would be 

welcomed. Errors most frequently described in the 

free text fields were medication errors (mostly 

concerning analgesia and sedation) and errors in 

communication. Overtreatment, undertreatment and 

decision making were also frequently named. 

Conclusion: The data indicate that there are diverse 

types of errors in palliative care. The large proportion 

of non-medication errors, especially errors in 

communication, distinguish the perception of errors 

in palliative care from that in other disciplines. There 

is a clear need for more discussion, education, 

research and teaching on the topic. 





The Price of PODS: An Audit of Drug Wastage 

in a Specialist Palliative Care Unit 

Wheatland G. 1 , Gale S. 1 , Trotman I. 1 , Gill J. 1 , Jamal H. 1 



Introduction: One stop dispensing (OSD) and use 

of patient’s own drugs (PODs) are advocated in 

“Pharmacy in the Future - implementing the NHS 

plan”. The advantages over administration from ward 

stock include reduced drug errors, reduced dispensing 

and nursing time, improved information for patients 

and easier and more rapid access to drugs at discharge. 

However, there is a potential for wastage if 

prescriptions are altered as unused drugs cannot be 

reissued. We set out to audit the drug returns in a 

Specialist Palliative Care Unit (SPCU) with an 

established POD protocol. 

Methods: An audit of PODs returned as unwanted 

was carried out in a SPCU over a four week period. 

Medicines were grouped as those issued from our 

pharmacy, the community or other hospitals. These 

medicines were quantified and the reason for return 

recorded. 

Results: Of the drugs returned 62% were issued from 

our pharmacy as OSD, 29% were issued in the 

community and 9% from other hospitals. The total 

value of drugs returned was £1,490 of which 58% 

(£860) were issued by our pharmacy. Excluding 

controlled drugs and injections (not part of PODs) the 

cost of returns was £1207. The highest cost item 

returned was Pregabalin (42% £506). Other drugs 

included Omeprazole, Lansoprazole, Metoclopramide, 

Dexamethasone, Laxatives, Aspirin and Clopidogrel. 

Numerically Paracetamol was the commonest drug 

returned (9%). Returns were mostly because patient 

dying (72%) or drug discontinued (15%). 

Conclusion: Although there are many advantages of 

OSD some waste is inevitable. In this audit the 

annualized wastage from PODs is estimated to be 

£17,880 of which over £10,000 supplied locally may 

be savable. To achieve cost savings we recommend 

that high cost drugs (such as Pregabalin) should be 

supplied as ward stock until the dose is stabilized and 

similarly for other drugs needing titration. We also 

feel there is an important need for a specialist 

pharmacist at ward level to monitor drug supplies on 

a daily basis. 



Audit on Steroid Usage in Palliative Care 

Patients in a UK Inpatients’ Hospice (Closing 

the Loop) 

Subramaniam S. 1 , Bashyam V. 1 , Chukwujekwu A. 1 , King 

N. 1 

1 EllenorLions Hospices, Palliative Medicine, 

Gravesend, United Kingdom 

Steroids are commonly used medications in palliative 

care patients. However, there is lots of variation in 

practices in steroid usage. 

Aim: To evaluate our practice against guidelines’ 

from two local hospices and a network guidelines 

(Pan-Birmingham guidelines). Two audits conducted 

one in 2006 and a repeat audit in 2009. 

Methodology: Retrospective, case notes &drug chart 

review of all the patients in the authors’ unit (First 

audit: 49 patients admitted between Sep’05-Dec’05. 

Second: 78 patients: Nov’2008- Feb’2009). 

Results: 

First audit: Total patients: 49, On Steroids: 23 (46%). 

Started: 7, admitted on steroids: 16. Indication 

documented: 7/23.No clear plans: 16/23. Side effects: 

12 patients (Thrush: 4,Cushingoid: 3 (recorded), 

Proximal muscle weakness: 1,UTI: 2,Chest infection: 

1,Rash: 1). 

Second audit: Total number of patents: 78, Patients 

on steroids: 26, Started: 8, Admitted on steroids: 18. 

Indication documented: 6/8. No clear plans: 18/26. 

Side effects: 12 patients (Thrush: 7,Cushingoid: 1 

(recorded), Proximal muscle weakness: 2,UTI: 2,Chest 

infection: 2,Steroid induced Diabetes: 2,Nightmares: 

1). 

Both audits found that all the patients had correct 

doses prescribed for the respective indications, side 

effects monitored (urine sugar check, blood sugar 

check, anti-fungal, Proton pump inhibitors) But, there 

was no indication documented if the patients were 

admitted on steroids and no plans documented 

regarding reduction/stopping of steroids on the 

majority of patients. Also there was inconsistency in 

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the prescription of anti-fungal medications. 

Conclusion: Due to the first audit correct dosages of 

steroids and checking for the side effects were 

completely achieved. However, the documentation of 

indications and reduction plans need further 

improvement. Further plans of introduction of steroid 

card, space for steroids in the drug chart and re-audit 

in 1 year are recommended. 

(References & Guidelines will be included in the 

presentation/poster). 



The Use of Corticosteroids in Specialist 

Palliative Care: A Regional Audit 

Miller S. 1 , Regan J. 1,2 , Doherty J. 1,3 

1 Marie Curie Hospice, Belfast, United Kingdom, 

2 Belfast Health and Social Care NHS Trust, Palliative 

Medicine, Belfast, United Kingdom, 3 South Eastern 

Health and Social Care Trust, Palliative Medicine, 

Belfast, United Kingdom 

Aims: To audit the use of corticosteroids in specialist 

palliative care in the region against locally agreed best 

practice and guidelines developed by another region; 

to produce evidence based guidelines for steroid use. 

Methods: Prospective audit of all patients in the 

region receiving specialist palliative care in 

community, hospice and hospital settings over a two 

week period. Patients already on steroids and those 

newly prescribed steroids during this period were 

included in the audit. The proforma was adapted from 

a tool used in another region. A literature review was 

carried out to inform guideline development. 

Results: 252 patients received corticosteroids during 

the audit period of whom 81% were already on 

steroids. The majority of these patients were in the 

community setting. 19% had steroids initiated. The 

majority of these were hospital inpatients. In most 

cases those newly prescribed steroids were prescribed 

appropriate doses for the indication stated. Patients 

already taking steroids were on lower doses than the 

starting dose recommended for each indication, 

suggesting weaning. The majority of patients were 

prescribed proton pump inhibitors (PPIs). 31% of 

patients were co-prescribed one or more drugs known 

to increase the risk of gastrointestinal bleeding. 

Steroid-induced side effects were seen in 21% of 

patients newly commenced on steroids and in 48% of 

patients who were already on steroids. Blood sugar 

monitoring was not documented in 66% of patients. 

A steroid treatment plan was present in only 58% of 

discharged patients. 

Conclusions: Steroids, particularly dexamethasone, 

were used frequently for a variety of indications. Side 

effects were common, particularly in long term use. 

Appropriate dosing schedules were observed in the 

majority of cases. Areas for improvement were PPI 

prescription, blood glucose monitoring and postdischarge 

weaning plan, where appropriate. Regional 

evidence-based guidelines have been developed as a 

result of this work. 



Sedation Use at the End of Life - Change over 5 

Years in a Hospice 

Tredgett K. 1 

1 Saint Michaels Hospice, Herefordshire, United 


Introduction: Sedative medications are used in 

hospices to treat terminal agitation and restlessness. 

Methods: The notes of 50 consecutive patients who 

died in 2004 were reviewed. The indications for and 

doses of sedative medications administered on the last 

full day of life were calculated. This was repeated in 

2009 and comparison made in order to audit practice. 

Results: The patient groups were of similar in age, 

duration of stay and diagnosis. 

Sedative medication was commonly administered on 

the last day of life (94% 2004, 100% 2009). 

The number of patients given midazolam increased 

(76% 2004, 88.9% 2009), with median dose 

increasing (20.0mg 2004, 27.5mg 2009). 

Levomepromazine was administered more frequently 

in 2009 (47.2% v 26.0% 2004). The most commonly 

documented indication changed from nausea to 

agitation. Median dose increased (18.75mg 2004, 

50.0mg 2009). 

Haloperidol use fell (26% 2004, 8.3% 2009), with an 

‘anti-emetic’ median dose in both audits (2.5mg 2004, 

3mg 2009). It was prescribed almost exclusively for 

nausea in both audits. 

The proportion of patients receiving sedative doses 

(midazolam 20+mg, levomepromazine 25+mg) 

increased (44% 2004, 72% 2009). 

When used in combination with both drugs at 

sedative doses, the most common combination was 

midazolam and levomepromazine (2% 2004, 33.3% 

2009). 

Discussion: There has been a change in sedation 

practice, with a trend of treating more patients with 

higher doses of midazolam and levomepromazine, 

and a fall in haloperidol use. The increases are most 

marked for levomepromazine. It may be that 

haloperidol used at low, less sedating, anti-emetic 

doses, prevents or reduces agitation, reducing the 

need for high doses of midazolam or 

levomepromazine. 

The shift may in part reflect changes in the medical 

team. The similar demographic and disease 

characteristics of patients in the two audits make 

these variables an unlikely explanation. 

Further study is needed to establish the optimal 

regimen for patients. 

Funding: None. 



A Prospective Audit of Syringe Driver Use in a 

Regional Cancer Centre 

Lester L. 1,2 , Murray G. 3 , Fleming J. 1 

1 Waterford Regional Hospital, Palliative Medicine, 

Waterford, Ireland, 2 St Francis Hospice, Palliative 

Medicine, Dublin, Ireland, 3 Waterford Regional 

Hospital, Palliative Care, Waterford, Ireland 

Aims: The syringe driver is in use since the 1980’s to 

administer subcutaneous medications. Several syringe 

driver models are available. The Graseby MS16A 

Syringe Driver (GSD) is used in this Regional Cancer 

Centre (RCC). The aim of this audit is to compare the 

use of the GSD against the 2007 hospital policy. 

Methods: A prospective audit of 27 GSD in use over a 

3 month period was undertaken. A data entry sheet 

was prepared using the 2007 Hospital Policy to set 

standards. Information was gathered under 5 

headings: 

1. Documentation of Indication for use; 

2. Prescription of medications; 

3. Tracking and Storage of GSD; 

4. Set-up and 5. Monitoring of GSD. 

Results: The indication for the GSD was not 

documented in 7/30 (23%). Legibility of GSD 

medication doses and names were 27/27 and 26/27 

respectively. 62% (8/13) of the GSD, signed out to 

non-oncology wards, could not be traced. In 8/27 

(30%) of evaluations, the measurement of volume 

was incorrectly documented in millilitres (ml). A rate 

04mm/hr was set in 2/27 (7%). The GSD was not 

running to schedule in 8/27 (30%). In 11% (3/27) a 

skin site reaction was present. A silhouette cannula 

was used in 26/27. The monitoring sheet was not 

completed correctly in 30% (8/27). The 

recommended four hourly monitoring of GSD was 

not done in 37% (10/27). 

Conclusion: Documentation of the indication for a 

GSD should be available. Prescriptions adhered to 

standards. GSD monitoring sheets need to be filled 

correctly to ensure errors are identified. For a Hospital 

Palliative Care Service traceability and storage of GSD 

is important to allow ease of access and servicing. A 

better system needs to be established for this Hospital 

e.g. allowing each ward to take 

ownership/responsibility for a certain number of 

GSD. GSD set- up evaluations revealed deviation from 

standards. These deviations can be attributable to 

human error. 



Development of Quality Indicators for 

Palliative Care in Belgium 

Leemans K. 1 , Cohen J. 1 , Van den Block L. 1 , Vander Stichele 

R. 2 , Francke A.L. 3 , Deliens L. 1,3 , Research Group End-of- 

Life Care Ghent University & Vrije Universiteit Brussel 

1 Vrije Universiteit Brussel, Brussels, Belgium, 2 Ghent 

University, Gent, Belgium, 3 VU University Medical 



Aims: Evaluation of quality of palliative care is an 

important condition to optimize and improve care. 

This study aims to develop a comprehensive set of 

quality indicators to monitor the quality of palliative 

care in Flanders, Belgium. 

Methods: An extensive literature review led to the 

identification of 337 national and international 

quality indicators, divided into 9 domains and 154 

themes. In accordance with the systematic RANDmethod 

(combining scientific evidence with 

consensus among stakeholders), we organized 2 

consecutive multidisciplinary palliative care expert 

panels, a first one to identify and select the themes 

most important to palliative care, and a second one to 

assess a list of quality indicators within those selected 

themes in terms of importance and necessity. 

Results: The first panel of experts selected 57 

important themes within 9 domains: 

1) physical treatment and care, 

2) psychological, social and spiritual treatment and 

care, 

3) information, communication, planning and 

decision making with patients, 

4) with family and 

5) with other caregivers, 

6) type of care at the end of life, 

7) coordination and continuity of care, 

8) support for family, and 

9) structure of care. 

The assessment of all indicators on importance and 

necessity occurred via an assignment at home 

followed by a joint panel discussion where indicators 

could be modified or added. The second panel of 

experts withheld 57 indicators within these themes. 

For a number of domains within palliative care such 

as spiritual and social care and coordination of care, 

the existence of good quality indicators in the 

literature appears scarce. 

Conclusion: Literature review and expert panels lead 

to the selection of 57 indicators to measure quality of 

palliative care in Flanders across 9 domains of 

palliative care. This set of quality indicators now will 

be tested and evaluated in practice, in order to 

eventually implement the set safeguarding an 

adequate monitoring of the quality of end-of-life care. 



The National Primary Care Snapshot in End of 

Life Care England 2009 

Thomas K. 1 , Stobbart-Rowlands M. 1 

1 The Gold Standards Framework Centre, Shrewsbury, 


Aims: The aim of the National Primary Care 

Snapshot Audit in End of Life Care was to provide a 

national baseline assessment of provision of end of 

life care for the Department of Health’s End of Life 

Care Programme across the country. The aim was to 

assess gaps in service provision and areas requiring 

further improvement. 

Methods: The Snapshot Audit involved use of the 

GSF After Death Analysis (ADA) Audit Tool a well 

validated audit tool widely used within primary care, 

care homes and hospitals. It uses patient outcome 

data related to individual patients and provides 

assessment by the primary care team of the care 

provided. This includes questions on dying in their 

preferred place of care, hospital admissions, use of 

services, advance care plan discussions etc. Practices 

were followed up to increase compliance. 

Results: 502 GP practices provided data from over 

4,500 patients in 15 PCTs for every death over a two 

month period, leading to a 60% uptake rate. Key 

findings included only 27% of all patients’ deaths 

were included on the palliative care register, only a 

quarter of these had non-cancer and 42% of all deaths 

were deemed to be sudden or unpredictable. Each area 

was benchmarked against national data, with reports 

to each practice, PCT and the DH, with specific 

suggested recommendations for further 

improvement. 

Conclusion: This proved extremely valuable in 

providing an objective overview of the current state of 

end of life care provided by GP practices 

demonstrating key areas for further improvement. A 

conclusion were that too few patients were identified 

and included on the palliative/GSF care register, too 

few had non-cancer conditions and there were gaps in 

specific services such as out-of-hours care and 

bereavement support. Recommendations led The 

National GSF Centre to focus on earlier identification 

of patients and other specific areas requiring 

improvement. 

This study was partially funded by a grant for the DH 

End of life care programme. 




Comparison of an Independent and a 

Palliative Care Unit Associated to an 

Oncological Department 

Grebe C. 1 , Simanek R. 2 , Benold U. 2 , Geissler K. 2 , Reiner F. 1 

1 Landeskrankenhaus Vöcklabruck, Palliativstation, 

Vöcklabruck, Austria, 2 Krankenhaus Hietzing mit 

Neurologischem Zentrum Rosenhügel, 5. 

Medinzinische Abteilung mit Onkologie und 

Palliativstation, Vienna, Austria 

Aim: Limited evidence exists regarding differences in 

palliative care in different settings. Aim was to 

evaluate whether there are differences between an 

independent palliative care unit (IPU) and a palliative 

care unit associated to an oncological department 

(OPU) regarding structural and medical patient 

characteristics. 

Methods: We followed one hundred consecutive 

patients prospectively at both PU`s using a 

standardized questionnaire at time of admission and 

departure or death, respectively. The recruitment 

started at the first of September 2009. 

Variables of interest were duration of stay, percentages 

of cancer and non-cancer patients, percentage of 

deceased and discharged patients, ongoing outpatient 

palliative care, number of reuptakes, reasons for 

admission and procedures during stay. 

Results: Major structural differences between IPU 

and OPU were found in average duration of stay (11.9 

vs. 21.7 days), stay longer than 21 days (18 vs. 39%), 

percentage of non-cancer patients (20 vs. 3%), 

deceased patients during stay (42 vs. 65%), mobile 

palliative care after discharge (72 vs. 31%) and 

percentage of reuptakes (34% vs. 16%). 

The most important reasons for admission were pain 

therapy and other symptom control (e.g. dyspnoea, 

constipation, weakness, loss of appetite) at both PU`s. 

Differences regarding performed procedures between 

IPU and OPU during the stay were seen in pain 

therapy (advanced drug pain therapy 21 vs. 35%, 

interventional pain management 10 vs. 0%), 

transfusions (4 vs. 21%), implantation of Porth-a- 

Caths (2 vs. 13%), parenteral nutrition (9 vs. 27%) and 

antibiotics (20 vs. 44%). 

Conclusion: The IPU offers palliative care concepts 

also for non-cancer patients, therefore the OPU seems 

to be more specialised on oncological patients’ needs. 

Interestingly the OPU applies more supportive 

therapy (e.g. transfusion, parenteral nutriton). Both 

PU`s have to assume hospice function. 



Evaluation of European Collaborative 

Working to Optimise Research for the Care of 

Cancer Patients at the End of Life: OPCARE9 

Mason S.R. 1 , Dowson J. 1 , Gambles M. 1 , Fowler-Johnson 

S. 2 , Brooks C. 2 , Ellershaw J.E. 1,3 


University of Liverpool, Liverpool, United Kingdom, 

2 Organisation Development Services Ltd (ODS), 

Manchester, United Kingdom, 3 Royal Liverpool and 



OPCARE9 is an EU 7 th Framework funded Coordination 

and Support Action project to optimise 

care of cancer patients in the last days of life. Using a 

systematic approach, the international collaborative 

seeks to establish consensus based agreements on 

optimum care and develop novel methodologies to 

address existing gaps within the evidence base. An 

independent developmental evaluation of the 

OPCARE9 collaborative has accompanied the core 

work of the project. 

A structured methodology was developed for 

summative evaluation. Ten members of the 

collaborative were randomly selected to participate in 

a telephone interview to review whether successes 

and challenges identified in an interim evaluation 

had been respectively maintained and addressed. The 

results prompted the design of a questionnaire, 

distributed to all 58 OPCARE members (response rate 

56%). Further analysis identified key questions that 

were discussed in four focussed evaluation panels 

following the penultimate OPCARE9 colloquium. 

Preliminary results identify three key themes: 

leadership, structured collaborative working & 

communication. Core elements of success were 

identified as: inclusive, flexible and democratic 

leadership; core infrastructure & central coordination, 

early commitment of key personnel; and, 

agreement upon strategic aims across the 

collaborative. Face to face meetings (bi-annual 

colloquiums) were perceived as pivotal to driving the 

project forward; establishing supportive networks, 

creating energy and providing opportunity for 

development. Concerns regarding the IT platform for 

communication remained, but had improved 

following the interim evaluation. 

Despite the challenges of co-ordinating five primary 

workpackages with representation from 9 countries, 

members of OPCARE9 view the collaborative as built 

on robust, replicable organisational principles that 

have established an integrated research community to 

advance care for cancer patients in the last days of life. 



Rehabilitation for Patients with Lung Cancer 

Bayly J. 1,2 , Mayland C. 1,2,3 , Gaunt K. 1,2 , Nwosu A. 1,2 , Alford 

J. 4 , Jones D. 5 , Vicky S. 6 , Sutton S. 7 

1 Woodlands Hospice Charitable Trust, Liverpool, 

United Kingdom, 2 Aintree Hospitals NHS Foundation 

Trust, Liverpool, United Kingdom, 3 Marie Curie 

Palliative Care Institute Liverpool, University of 

Liverpool, Liverpool, United Kingdom, 4 Clatterbridge 

Centre for Oncology NHS Foundation Trust, Wirral, 

United Kingdom, 5 NHS Wirral, Birkenhead, United 

Kingdom, 6 Marie Curie Hospice, Liverpool, United 

Kingdom, 7 Liverpool Heart and Chest Hospital NHS 

Foundation Trust, Liverpool, United Kingdom 

Cancer rehabilitation aims to maximise patients’ 

functional ability, improve quality of life and 

facilitates adaptation to changing health status. This 

audit aims to: 

Identify multi-disciplinary team (MDT) perceptions of 

the role and nature of rehabilitation in the 

management of patients with lung cancer. 

Identify existing referral patterns and barriers to 

referral. 

Develop new regional guidelines to improve referral 

practice for rehabilitation services. 

Electronic and paper proforma were sent to all 

members of two lung cancer, two specialist palliative 

care (SPC) in-patient, and two SPC community MDTs. 

59 proforma were returned with good representation 

from medical, nursing and allied health professionals. 

Rehabilitation needs were most frequently discussed 

at SPC in-patient MDTs and least likely at lung MDTs. 

54 (92.0%) respondents perceived that patients with 

lung cancer had rehabilitation needs. 

45 (76.3%) respondents were most likely to refer at the 

palliative stage of the patients’ illness. 

Breathlessness (n=55, 93.2%), fatigue (n=55, 93.2%), 

and impaired mobility (n=55, 93.2%) were most 

commonly identified rehabilitation needs. 

Communication difficulties (n=29, 49.2%) and 

dysphagia (n=26, 44.1%) were least frequently 

identified. 

Barriers to referral included waiting lists (n=15, 

28.8%), lack of knowledge about services (n=15, 

28.8%) and perceptions that patients didn’t want 

rehabilitation (n=13, 22%). 

Although lung cancer and SPC MDTs perceive 

patients with lung cancer have rehabilitation needs, 

these needs are not always identified or addressed. 

Our recommended guidelines state: 

All patients with lung cancer should have their 

rehabilitation needs identified within a holistic 

assessment process in a planned and timely manner. 

Clear referral pathways to all rehabilitation services 

should include specific named contact points for 

physiotherapy, occupational therapy, dietetic and 

speech and language therapy services. 



Evaluation of Hospice Physiotherapy Using 

Physical Function as a Marker 

Cobbe S.C. 1 , Kennedy N. 2 

1 Milford Care Centre, Limerick, Ireland, 2 University of 

Limerick, Dept of Physiotherapy, Limerick, Ireland 

Aims: To evaluate physiotherapy practice in an Irish 

hospice. 

Methods: Retrospective chart evaluation on all 

discharges, due to death or discharge home, between 

Jan and June 2010. Patient function during 

physiotherapy was measured using the Edmonton 

Functional Assessment Tool (EFAT-2). Descriptive 

statistics and SPSS were employed. 

Results: 65% of patients were referred for 

physiotherapy, 58% (n=144) were assessed and 



treated. Of those not referred, 78% had a hospice stay 

of 4 days or less. Both rehabilitation candidates and 

purely palliative patients were referred: Mean EFAT-2 

score on referral was 11 (range 1-23, SD 5). Mean 

change between highest and lowest EFAT-2 score was 

6 (range 2-26, SD 5), showing high variability in 

function during the treatment period.The average 

physiotherapy programme lasted 16 days (range 1- 

186, SD 22) and comprised of 6 treatments (range 1- 

99, SD 10). The most common treatments were gait 

re-education (67% of patients), transfer training 

(58%) and exercise (53%). Interruptions to treatment 

were common: 33% of treatment attempts were 

unsuccessful due to unsuitability/unavailability. 

Rehabilitation activities were common: 48% of 

patients with 2 or more EFAT-2 scores made at least 

temporary functional improvements (average 

improvement 15.7%) and 46% of physiotherapy 

patients were discharged home. 52% of 

physiotherapy patients who died had treatment in 

the last week of life. 

Conclusion: There is a high referral rate to 

physiotherapy in this hospice. Physiotherapy 

involved rehabilitative and palliative interventions. 

Over half of physiotherapy patients were discharged 

home. For those who died, physiotherapists were 

involved close to death. Challenges include a highly 

changeable clinical picture, difficulty in providing 

continuous treatments and ethical issues with scoring 

sick patients. The most common physiotherapy 

treatments were physical activity interventions.There 

are implications for the education of therapists. 



A Prospective Audit of Opioid Switching in a 

Specialist Palliative Care Unit 

McWilliams K. 1 , Ross C. 1 

1 St Andrews Hospice, Airdrie, United Kingdom 

Introduction: Opioid switching is commonly used 

in palliative medicine to improve pain control and 

reduce side effects. A recent expert panel published a 2 

step guideline for opioid rotation. This involved an 

‘automatic dose reduction window’ of 25-50% 

depending on clinical judgement, followed by 15- 

30% increase or decrease according to patient 

characteristics and pain severity. 

Aim: Our aim was to assess the practice of physicians 

in a specialist palliative care unit with regard to opioid 

switching. 

Method: We prospectively audited consecutive 

opioid switches in a specialist palliative care unit, 

recording patient characteristics, opioids, doses and 

route of administration at baseline, post-switch (Day 

1) and 24 hours post switch (Day 2). 

Results: 34 consecutive opioid switches involving 24 

patients with a mean age of 62.5 years were audited. 

The most common opioid at baseline was oral 

morphine. Daily morphine equivalent (ME) doses 

ranged from 10 to 880mg, the average being 166.9mg. 

The most common opioids in use on Day 1 (postswitch) 

were sc morphine and sc oxycodone. ME at 

day 1 ranged from 10 to 640mg, with an average of 

107.5mg. At Day 2 the ME ranged from 10-880mg, 

with a mean of 162.44mg. 10/24 patients underwent 

a change in adjuvant analgesics at the time of opioid 

switch. The two most common reasons for switching 

were oral route no longer appropriate and adverse 

effects. Oral to sc of the same opioid was the most 

common type of switch. 

Conclusions: When opioid switching, most patients 

had a relative dose reduction in their opioid. This 

ranged from 9 to 75%. 8 patients had a direct 1:1 

conversion. ME on Day 2 more closely resembled that 

at Baseline than on Day1, suggesting that doses were 

reduced by too much and patients then used 

sufficient breakthrough to achieve the ME prior to 

opioid switch. Conclusions were limited by the 

concurrent changes in adjuvant analgaesics and may 

also be influenced by deteriorating clinical 

conditions. 

173 


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Importance of the Multidisciplinary Decision 

Making in Palliative Care. 7 Years of 

Experience Analysis 

Muñoz Carmona D.M. 1 , Domínguez Rodriguez M. 1 , 

Fernández Cordero M. 1 , Marquez García Salazar M. 1 



Introduction: At follow-up of cancer patients there 

is a tipping point where the active cancer treatment, 

no longer has a place, being necessary from this point 

only symptomatic palliative treatment. This is where 

lies the importance of the existence of palliative care 

units (PCU), support equipment, primary care, and 

essential for the establishment of a 

MULTIDISCIPLINARY MAKING COMMITTEE 

PALLIATIVE CARE (MMCPC), for making the right 

decisions indications for referral, timely treatment 

and appropriate follow-up. In our hospital we created 

this committee in 2003. Composed of radiation 

oncology departament and medical, palliative home 

care units. The main objective of these sessions is the 

creation of a concrete action plan and individualized 

to the problems identified and improve the quality of 

care for these patients and addressed all the problems 

from a prism bio-psycho-social. 

Material and method: We conducted a descriptive 

study with quantitative methodology, which 

included all patients referred to the various units of 

palliative care at area hospitals, with a diagnosis of 

cancer disease, after being discussed in the context of 

MMCPC from 2003 until today. Analysis of the 

variables defined in our study was performed with the 

SPSS 16. 

Results: The total number of patients included was 

391.The total number of patients with the date of 

exitus 157. The mean age of patients was 65y. The 

37.6% were females while 62.4 were male. 

Nºpatients< 65 years:120p; 65-84 y: 149p; +85y: 19p. 

The distribution of oncological diseases who were 

treated for their disease is reflected in grafic 1. The 

reason to referral PCU is described in grafic 2. 

Conclusions: We advocate the creation of such 

committees and conducting regular multidisciplinary 

meetings to address all key aspects of those patients 

having completed active cancer treatment need 

palliative care to ensure continuous quality life until 

the end of their lives. 



Where Do We Go from Here? 

Ngo D. 1 , Whyte B. 2 , Tiernan E. 3 

1 St Vincent’s University Hospital, Department of 

Pallliative Medicine, Dublin, Ireland, 2 St Vincent’s 

University Hospital, Department of Palliative 

Medicine, Dublin, Ireland, 3 St Vincent’s University 

Hospital, Dublin, Ireland 

Aim: Research shows that patients prefer to die at 

home. If not possible, hospice may be appropriate. 

Patients with uncertain prognosis or less complex 

specialist palliative care needs, but unable to be cared 

for at home, can present an even greater challenge in 

respect of appropriate place of care. Analyse outcomes 

for patients referred to the Specialist Palliative 

Medicine Service (SPMS), focusing on discharges to 

hospice or other institutional care settings. 

Methods: Retrospective review of referrals to SPMS at 

St. Vincent’s University Hospital during 2008 using 

PALCARE database. 

Results: Total referrals: 712. 328 (46%) died in 

hospital; 384 (54%) discharged - 284 (74%) home, 36 

(9.5%) hospice, 24 (6%) nursing home, 40 (10.5%) 

other hospital. Hospice transfer: 28 to Blackrock 

Hospice (median waiting time 3 days; median survival 

in hospice 6 days); 8 to Our Lady’s Hospice (median 

waiting time 6 days; median survival in hospice 12 

days). A further 24 patients died in hospital awaiting 

hospice transfer (median survival from referral to 

death 3 days). 26 patients were referred to nursing 

homes/other extended care facilities. Of these, 23 

waited more than 10 days from first review by the 

SPMS to transfer to an extended care facility (average 

51days; range 10-149), with 2 dying before transfer. 

These 23 patients occupied a cumulative total of 1184 

bed days awaiting placement. 

Conclusion: The majority of patients referred to the 

SPMS were discharged from hospital, with most going 

home. Access to hospice beds for those deemed 

appropriate for transfer was not problematic. A 

problem was identified placing patients who required 

intermediate level ongoing inpatient care. Our results 

support our pre-audit impression (based on anecdotal 

experience) which suggested that there is a significant 

deficit in level 2 or intermediate level palliative care 

beds in the community, which needs to be addressed 

as a priority. 



An Audit of Handover Information Provided 

to the London Ambulance Service (LAS) for 

Palliative Care Patients 

Smith C.F. 1,2 , Whitmore D. 3 , Hough L. 1 , Riley J. 1,2 



United Kingdom, 2 Imperial College London, London, 

United Kingdom, 3 London Ambulance Service, 


Background: Transfer of information between 

service providers is a factor that limits the provision of 

good out of hours care for palliative patients.The 

Department of Health End-of-Life Care Strategy 

advocates the development of electronic end-of-life 

care registers to improve communication between 

professionals. 8 pilot sites across the UK are 

implementing these registers, two are based in 

London. Historically, handover of information to the 

LAS has been via a fax proforma. 

Aims: To determine the quality of the handover 

information provided to the LAS 

Methods: All ‘active’ handover forms for patients 

living within Merton and Sutton Primary Care Trust 

that were received by the LAS at one time point in 

2010 were reviewed. Information was collected on 

completeness and patient demographics. 

Results: A total of 131 were analysed, representing 

120 different patients. All forms had at least one data 

field missing.The role of the professional completing 

the form was clear in 95% of cases. These were; 

clinical nurse specialist (34%), nursing home staff 

(27%), GP (25%), GP practice staff (5%) and other 

(9%). Diagnosis was complete for 96% (n=115) of 

patients. Diagnoses included; cancer (68%), dementia 

(14%), heart failure (4%), COPD (3%), other (11%). 

The consent to share information field was complete 

on 71% (n=85) of forms, and of these 65% (n=55) had 

gained the patients consent. The patient resuscitation 

status was clear on 64% (n=77) of the forms, in 94% of 

these the decisions was not for resuscitation. Only a 

minority of forms had preferred place of care 

documented (18%). 

Conclusion: The information provided to the LAS 

can be improved, most forms are missing some vital 

pieces of information. An electronic register will 

immediately improve some of the missing data. 

However, sensitive issues such as resuscitation and 

preferred place of death also require more training in 

communication skills to significantly change the 

quality of hand over information and care provided. 



A comparison Audit of Patients Dying from 

Chronic Lung Disease in Hospital and a 

Specialist Palliative Care Unit 

Lobo P. 1 , Newens P. 1 , Thorns A. 1 

1 Pilgrims Hospice, Palliative Medicine, Margate, 


Aims: To compare end of life care measures in 

patients dying from chronic lung disease as inpatients 

of an acute hospital with those in an inpatient 

hospice unit; and to evaluate the feasibility of a 

comparison between these two settings when 

assessing end of life care for this group of patients. 

Method: The audit was conducted in September 

2009. Patients with end-stage respiratory disease who 

died during an admission at either the hospice or local 

hospital were identified retrospectively from clinical 

coding records. Data pertaining to their clinical care 

were obtained by review of case records. The 

following items were compared between the care 

settings: use of the Liverpool Care Pathway (LCP); 

pharmacological therapy; investigations and 

monitoring during the last 48 hours of life; and do not 

attempt resuscitation (DNAR) decisions. 

Results: 8 patients in the hospice and 9 patients in 

the hospital were identified. Key findings included 

that in the hospice, 7 patients (88%) had a DNAR 

decision, versus 5 (56%) in the hospital. The LCP was 

used for 3 patients (38%) in the hospice versus 2 

(22%) in hospital. Opioid and anxiolytics were both 

prescribed for 100% of hospice patients. Among 

hospital patients, they were prescribed for 78% and 

67%, respectively. 

Conclusion: Comparing the two settings is feasible. 

In general, management of patient dying from 

respiratory illnesses appeared better in the hospice 

than the hospital setting. We propose that such 

patients should be identified early, enabling early 

transfer to a multidisciplinary specialist palliative care 

service or discharge home to die. When these patients 

are managed in the hospital, particular efforts are 

required to improve the prescribing of end of life 

medications and to open and honest communication. 

Educational needs of the clinical teams should be 

identified and met to achieve these 

recommendations. 



Audit of Strong Opioid Titration against Local 

Symptom Control Guidelines at a Specialist 

Palliative Care Inpatient Unit 

Pain L.C. 1 , Powles L. 1 , Martin J. 1 

1 St. Joseph’s Hospice, London, United Kingdom 

Background: Opioid drugs are commonly 

prescribed by palliative medicine physicians who are 

considered expert in their use. We audited the 

titration of strong opioids on a specialist palliative 

care inpatient unit against the unit’s own symptom 

control guidance adapted from that of a local 

specialist cancer centre. 

Aim: To assess whether doctors are titrating opioids 

in accordance with existing local symptom control 


Objectives: 

- To describe strong opioid use. 

- To examine the quality of reasoning and 

documentation of clinicians. 

Methods: We carried out a retrospective audit of the 

medical case notes & drug charts of 105 patients 

discharged from the inpatient unit. Notes were 

examined by one of two authors (LPa or LPo), a 

random sample were then reviewed by a third author 

(JM). 

Results: 61 patients (58%) were receiving strong 

opioids at the time of discharge. 44 patients were 

excluded as either the dose was not increased (n=27) 

or they were receiving opioid therapy by the 

transdermal route (n=17) which is not appropriate for 

rapid titration. Patients titrated by the oral (n=9) or 

subcutaneous (n=8) routes were mostly prescribed 

morphine (n=11), or oxycodone (n=5). The median 

number of increases in dose per patient during 

titration was 2, the dose never being increased more 

than 3 times. 21 of the 27 individual increases in dose 

followed guidelines; in 2 of the 4 incidences of 

deviance reasoning was documented and was 

appropriate in both cases. 

Conclusions: 

- Transdermal route more common than oral and 

subcutaneous combined. 

- Morphine is most commonly used 

oral/subcutaneous strong opioid. 

- Titration of analgesia not necessary for most patients 

admitted to inpatient unit; when required satisfactory 

analgesia can be rapidly achieved. 

- Symptom control guidelines followed or deviance 

explained appropriately in the majority of cases. 

- Areas for future examination: opioid titration in the 

final stages of life and use of transdermal analgesia. 



Liverpool Care Pathway at the National 

University Hospital, Reykjavik, Iceland: Audit 

for the Year 2009 

Halfdanardottir S.I. 1 , Petursdottir A.B. 2 , Gudmannsdottir 

G.D. 2 , Olafsdottir K.L. 3 , Sigurdardottir V. 4 

1 The National University Hospital, Palliative Care 

Unit, Kopavogur, Iceland, 2 The National University 

Hospital, Gerontology Palliative Care Unit, Reykjavik, 

Iceland, 3 The National University Hospital, Palliative 

Care Team, Reykjavik, Iceland, 4 The National 

University Hospital, Palliative Care Unit and Palliatve 

Care Team, Kopavogur, Iceland 

Introduction: The Liverpool Care Pathway (LCP) 

from Liverpool UK is a well know document which is 

used for the last days of life. Included are 18 objectives 

and variance documentation. Regular 4 hourly 

assessments are done for five common symptoms. 

Variance is documented if goals are not 


accomplished. Symptoms assessed and present at 

other times are also documented on the variance 

sheet. Version 11 of the pathway was implemented 

2008 in three units at the National University 

Hospital: A General Palliative Care Unit (8 bed unit), a 

Geriatric Palliative Pare Unit (9 bed unit) and an 

Oncology Unit (14 bed unit). 

Method: Audit for year 2009 included all patients on 

LCP from the three units (n=160). The LCP document 

is a part of the patients´ medical record and after 

achieving required permission the data collection 

started. Goals of care achieved both in initial 

assessment and after death section were evaluated as 

well as regular 4 and 12 hourly assessments. 

Furthermore, variance documentation was evaluated 

together with all medication given. 

Results: The LCP was most often used at the General 

Palliative Care Unit with 80% of dying patients on the 

pathway. Twenty four out of 29 goals were achieved 

in over 85% of the time. The most common 

symptoms in the last 24 hours of life were: Pain, 

agitation and respiratory tract secretions. These 

symptoms were presented with 10-20% of the 

patients at regular assessment points. A difference was 

found between units regarding severity of these 

symptoms. They were more frequent at the oncology 

unit. Regular medication for agitation was less often 

used at the oncology unit. 

Conclusion: The Liverpool Care Pathway is a 

valuable tool to guide clinical practice. The audit has 

confirmed the usefulness of the pathway regarding 

documentation during the last days of life and made 

measurable prevalence of common symptoms when 

death is approaching. Moreover regular audit gives an 

educational opportunity during feedback for units 

involved. 



Sexual Health Assessment in Palliative Care: 

An Audit of Practice 

Gaunt K.E. 1 , Latten R. 2 , Allsopp L. 3 , Roberts S. 4 , Webster 

C. 4 , Fountain A. 5 , Kendall M. 6 

1 University Hospital Aintree, Palliative Medicine, 

Liverpool, United Kingdom, 2 Marie Curie Palliative 

Care Institute, Liverpool, United Kingdom, 3 Marie 

Curie Hospice, Liverpool, United Kingdom, 

4 Liverpool Womens’ NHS Foundation Trust, 

Liverpool, United Kingdom, 5 Halton Community 

Palliative Care, Liverpool, United Kingdom, 

6 Warrington and Halton Hospitals NHS Foundation 

Trust, Runcorn, United Kingdom 

Background: The National Institute for Clinical 

Excellence (NICE) guidance in 2004 for ´supportive 

and palliative care for adults with cancer´ outlined 

the importance of recognising the sexual health needs 

of patients with cancer. The existing literature 

suggests that maintaining strong and healthy 

intimate relationships throughout cancer diagnosis 

and treatment can have positive psychological 

outcomes. This is a challenging area of assessment 

and a number of barriers to performing an effective 

sexual health assessment have been recognised. With 

this in mind, a re-audit of regional practice into the 

sexual health assessment of palliative care patients 

was carried out. 

Aims: 

1. To determine if the current standards of sexual 

health assessment for the palliative care patient were 

being met. 

2. To establish the perceived barriers to sexual health 

assessment 

3. To determiine the areas in which future training 

could be focused 

Method: An online survey was developed using the 

´surveymonkey´ software. This was distributed by 

email to healthcare professionals (hcps) working in 

the palliative care setting within the region. 

Results: 137 responses were received from hcps 

working in hospice, hospital and community 

palliative care. Of the 77% of hcps who stated they did 

assess patients´ sexual health needs, only 6% always 

assessed and 37% assessed only when the subject was 

raised by the patient. It was more common for hcps to 

assess sexual health needs at the subsequent rather 

than initial assessments. The main themes that 

emerged as barriers to assessment included 

embarrassment, lack of confidence and lack of 

training. Communication skills to aid the assessment 

process were commonly raised as an area of future 

training need. 

Conclusions: Using the results of this audit and the 

available literature, standards for future practice were 

developed. Future training in the area of sexual health 

assessment is currently being developed. 



Opioid Prescribing Errors at a District 

General/Teaching Hospital 

Leahy A.D. 1 , Littlewood C. 1 , Patrick S. 1 , Harrison S. 1 

1 St Helens and Knowsley Teaching Hospitals NHS 

Trust, Palliative Medicine, Prescot, United Kingdom 

Background: Prescribing errors as common, 

particularly opioid errors.[1] The UK National Patient 

Safety Agency issued a report following incidents 

including 5 mortalities.[2] Undue suffering due to too 

much or too little opioid from incorrect prescribing is 

unacceptable. Prescribing errors are multi-factorial 

and complex but little rigorous study of the causes of 

errors exists.[1] 

Palliative Care patients may be particularly vulnerable 

to opioid prescribing errors as they frequently are on 

opioid medications and dosages that may be 

unfamiliar to non-specialists, they move between 

different health care settings and may have several 

health care providers adjusting dosages. 

Aims: To audit prescribing errors of opioid 

medications at our hospital, to identify preventable 

remedial causes, and inform a prescribing errors 

policy 

Methods: Audited standards included local[3] and 

national guidelines.[4] 

New opioid prescription data was audited 

prospectively for a week collected by ward 

pharmacists with additional retrospective data and 

clinical assessment of risk or harm levels1 by medical 

staff. Data analysis performed by the clinical audit 

officer using Microsoft Access. 

Results (provisional): 35 out of 118 prescriptions 

had errors. 10 of these errors were rated as significant 

with potential harm from 25. Further specific error 

data to follow. 

Conclusions: To follow 

[1] Dornan, T et al; EQUIP Study, General Medical 

Council 2009 

[2] Reducing dosing errors with opioid medicines, 

NPSA/2008/RRR05, 2008. 

[3] Trust prescribing guidelines, 2010 

[4] Good Medical Practice, GMC 2006 



Anticoagulation Practice in Palliative Care 

Johnny L. 1 , Latten R. 2 , Emms H. 3 , Watt C. 4 , Farrance D. 3 , 

Ellershaw J. 5 

1 Royal Liverpool University Hospital, Palliative 

Medicine, Liverpool, United Kingdom, 2 St John’s 

Hospice, Palliative Medicine, Wirral, Liverpool, 

United Kingdom, 3 St Johns Hospice, Palliative 

Medicine, Liverpool, United Kingdom, 4 St John’s 

Hospice, Palliative Medicine, Lancaster, United 

Kingdom, 5 Marie Curie Centre for Palliative Care 

Research, Palliative Medicine, Liverpool, United 


Background: Venous-Thromboembolic events 

(VTE) are among the leading causes of death in cancer 

patients. Specific risk estimates of VTE by cancer type, 

stage and treatment are largely unknown.Further 

increases in risk can be caused by factors common in 

palliative care patients like reduced mobility. Current 

recommendations support use of Low Molecular 

Weight Heparin (LMWH) as first line management of 

cancer associated thrombosis. In the UK, the National 

Institute for Clinical Excellence published 

anticoagulation guidelines in 2010. 

Aim: A supra regional re-audit of palliative care 

network anticoagulation practice, establishing 

compliance with regional guidelines. Both treatment 

and prophylaxis of VTE was examined. 

Methods: A prospective case-note audit of patients 

receiving anticoagulation within specialist palliative 

care services in the network. Data was collected over a 

month from hospice, community and hospital 

advisory palliative care teams. Collected data included 

quality of documentation on initiation and 

monitoring of anticoagulation in line with existing 


Results: In total, 54 episodes of anticoagulation use 

were examined across the 3 palliative care settings. 

The majority of patients (98%) had cancer diagnosis 

of varying primary site. LMWH was most commonly 

used anticoagulation (74%). Documentation of 

indication for anticoagulation was 76% however 

intended duration was poorly documented. 

Documentation of full blood count and biochemistry 

pre-treatment was 64% but reduced to 26% 

subsequently. Majority of units did not have a policy 



for VTE prophylaxis. 

Conclusion: Audit findings were presented at the 

regional network audit group meeting. Specific areas 

for improvement were identified regarding 

documentation of anticoagulation duration and 

monitoring. The importance of re-weighing patients 

on LMWH was also highlighted. Regional guidelines 

were updated in light of audit findings to include 

guidance on VTE prophylaxis in palliative care 




What Do You Know? An Acute Hospital Audit 

of the Use of End of Life Tools 

Stickland A.E. 1 , Groves K.E. 1 , Deeming E. 1 , Walker S. 2 

1 West Lancs Southport and Formby Palliative Care 

Services, Palliative Care, Southport, United Kingdom, 

2 Southport and Ormskirk Hospital NHS Trust, 

Southport, United Kingdom 

Background: The Gold Standards Framework (GSF) 

is an evidence based approach which aims to improve 

care for patients nearing the end of life. Already in 

common use by primary care teams and care homes 

within the UK, recent efforts have introduced GSF 

into acute hospitals (GSFAH). The local acute hospital 

undertook one of these 6 month GSFAH pilots. 

Aims: To assess the use of end of life tools pre and 

post pilot. 

Methods: 57 staff completed a pre and post GSFAH 

questionnaire. The responses represented 12 medical 

staff, 43 nursing staff, 1 pharmacist and 1 ward clerk, 

originating from 14 different clinical areas. The results 

were analysed. 

Results: Prior to the pilot, 70% of staff had received 

training in end of life (EOL) care. 80% staff surveyed 

had experience of EOL tools. 9% stated previous use of 

GSF with 57% staff being aware of GSF. Following the 

pilot, 84% staff surveyed had had training in EOL 

care, 93% staff stated experience of EOL tools, with 

53% staff having used GSF and a further 42% being 

aware of it. The use of Preferred Priorities of Care 

(PPC) improved following the GSFAH pilot with a 

12% increase in stated use (8 % to 20%) and 12% 

increase in awareness (27% to 39%). The use of the 

Liverpool Care of the Dying Pathway (LCP) did not 

change significantly (60% vs 59%) but awareness did 

increase slightly from 22% to 29%. Reported use of 

Advance Care Planning (ACP) did not improve 

significantly (9% vs10%) but awareness increased 

from 35% to 54%. Staff use of specific tools as a trigger 

to help identify those in the last year of life increased 

from 14%to 27%. 

Conclusion: Introduction of the GSFAH and 

supporting training sessions increased reported staff 

experience of EOL tools including a significant 

increase in the use of GSF itself. Awareness of PPC, 

LCP and ACP also improved. Use of the LCP remained 

unchanged. This was already embedded as part of the 

culture and some may not have recognised the LCP in 

its local version called the Vigil. 



The Referrers’ View on Specialist Palliative 

Care Delivered at a Portuguese Acute Hospital 


Tavares F.A. 1 , Fradique E. 1 , Ramos A. 1 



Portugal 

In Portugal, in the last 5 years 8 public hospital-based 

palliative care (HBPC) programs were implemented. 

The view of referrers about the potential benefits and 

impact of those teams should complete ongoing 

research, seeking evidence on whether new services 

can lead to improved outcomes among patients and 

families. Aim To describe referrers’ perspective on 

delivery of specialist palliative care in a tertiary acute 

hospital. Methods Questionnaire surveys were sent to 

all 48 physicians who had referred patients during the 

first semester of 2010. Five topics were assessed: 

1) general satisfaction (4-point scale, covering 

dimensions such as global quality, access, technical 

skills, interpersonal manner and information-giving); 

2) ideal medical practice model for palliative care 

patients in that setting; 

3) expected specialist intervention on wards; 

4) usefulness of currently available support services 

and 

5) personal specifications. Results The participation 

175 


(Friday)


(Friday) 


rate was 31% (15/48). 

All but three responders were females. Among the 

departments, the best participation rate (64%) was 

shown in Oncology, followed by Gastroenterology 

(57%). Nine (out of 15) physicians had completed 

medical school more than 15 years ago. Except for the 

information provided about how to refer patients to 

hospice facilities (6 somewhat or very dissatisfied), 

most referrers were very satisfied with the HBPC team. 

Eight participants saw an acute palliative care unit as 

the ideal place to manage their patients. For admitted 

patients, specialist assistance was first sought to 

manage symptoms (6 physicians). One out of 3 

physicians thought that HBPC should also deliver 

inpatient psychosocial support and plan discharge. 

Seven participants considered outpatient clinics the 

most useful service actually provided. 

Conclusion: The few clinicians who completed the 

survey were satisfied with their working partnership 

and had favorable attitudes toward higher levels of 

HBPC involvement in the inpatient setting. 



Maximising Clinical Resources: An Audit of 

the Reasons why Patients Miss Appointments 

in a Primary and Secondary Lymphoedema 

Clinic 

Edgar S. 1 , Lloyd D. 1 , Mason S. 2 

1 Liverpool Marie Curie Hospice, Liverpool, United 

Kingdom, 2 Marie Curie Palliative Care Institute 

Liverpool, Liverpool, United Kingdom 

Background: An audit of the time lost in a 

lymphoedema clinic to patients that do not attend 

(DNA) or cancel appointments with less than 24 

hours was conducted between April 1 st and June 30 th 

(2009). Results identified that 32 patients that missed 

their appointment, equating as a total of 34.5 lost 

clinic hours. This highlighted the need for the 

implementation of standards to reduce the incidence 

of missed appointments. A further audit was 

conducted to evaluate newly integrated standards. 

Aim(s): To reduce the incidence of missed 

appointments; patients cancelling with less than 24 

hours notice and patients that do not attend. 

Method(s): Patients are informed of their clinic 

appointment by letter approximately one month 

prior to appointment. All patients that DNA’d or 

cancelled with less than 24 hours of their 

appointment were recorded manually and on the 

patient administration system (PAS) and were 

contacted via telephone to establish the reason for 

non-attendance. 

Results: A total of 307 patients had allocated 

appointments between July 1 st and September 30 th 

(2009) in addition to their letter they were reminded 

via telephone within five working days of their 

appointment. A number of patients (n=32) did not 

attend or cancelled with less than 24 hours notice in 

this period equating to 35 hours of clinic time lost. 

Conclusion(s): The audit identified that although 

new standards had been applied, an equivalent 

number of patients still missed their appointment and 

the total number of lost clinic hours remained the 

same. Reason for missed appointments included were 

that the patient had forgotten, administration errors, 

appointment clashes, illness and bereavement. 

Missed appointments remain a problem and new 

approaches to encourage patients to contact the 

service need to be explored in order to help the clinic 

to save money and reduce waiting times. Accordingly, 

new standards have been formulated for use within 

the clinic and will be re-audited bi-annually for 

effectiveness. 



Undertaking a Baseline Review, Establishing a 

Standard and then Re Auditing Practice in 

Relation to Medication Use in the Last Month 

of Life for Residents in Nursing Care Homes 

Kinley J. 1 , Hockley J. 1 

1 St Christophers Hospice, Care Home Project Team, 


Aim: To establish a standard that could be audited to 

optimise symptom control for nursing care homes 

residents in their last month of life. 

Method: A baseline audit was undertaken in 7 

nursing care homes in one locality. The audit 

consisted of a retrospective review of notes from 48 

deceased residents and a questionnaire to 67 

registered nurses and their managers. The 

questionnaire included a ‘last days of life’ scenario 

that captured knowledge and competency around 

decision making and setting up a syringe driver. Data 

were analysed using descriptive analysis. 

A standard was developed collaboratively alongside 

the nursing care home managers. Following a baseline 

audit, the new standard was introduced into practice. 

Care against the standard will be re-audited after 6 

months. 

Results: The baseline review revealed that a syringe 

driver to manage symptoms in the last days of life 

were used on 11 (23%) of residents. However, 8 out of 

the 11 (73%) were only used for a period of 1 ½ days 

or less. No resident without specialist palliative care 

support had an injectable medication prescribed. GPs 

made the decision to prescribe an injectable 

medication (PRN only) for three residents. The 

questionnaire highlighted a lack of nurse competence 

in the use of syringe drivers. Findings of the reaudit 

against the standard that was developed will be 

presented. 

Conclusion: The symptom control needs of older 

people in the last days of life may be more 

appropriately managed through the use of bolus 

subcutaneous medication or rectal suppositories. 



Blood Transfusion in the Palliative Care 

Setting - Documentation and Ethical 

Considerations 

Gregory A.L. 1 , Price M. 1 , Starnes G. 1 , North C. 1 , Myers L. 1 

1 St. Catherine’s Hospice, Crawley, United Kingdom 

Blood transfusions (BT) are often part of the 

management of patients with a cancer diagnosis. BT 

can improve symptoms of fatigue and breathlessness. 

Before offering BT in the palliative care setting, 

possible benefit must be weighed against potential for 

harm. Blood is becoming a rare, expensive 

commodity. A decision to carry out a BT can impact 

on preferred place of care being met. To ensure patient 

safety and quality control, there must be a clear record 

of the management of blood products from donor to 

recipient. Following a significant event analysis 

session (SEA), when the ethical aspects of BT towards 

the end of life were discussed, a retrospective audit of 

BT documentation was performed at our Hospice. 

Records of all inpatients transfused during a 3 month 

period were reviewed. 5 patients received 18 units of 

blood. The aim of the audit was to establish whether 

the hospice BT documentation, including posttransfusion 

evaluation was completed fully. We also 

wished to understand and improve our decision 

making around BT and the appropriateness and 

benefit to patients. The audit showed that paperwork 

was poorly completed at the time of a BT and there 

was poor documented evaluation of benefit post 

transfusion. All patients who received a BT died 

within 4 weeks of receiving the last unit. In response 

to the audit and SEA we have revised our guideline for 

BT and are developing a specific window on our 

electronic notes system to record data pertinent to BT. 

This will enable more effective auditing and lead to 

greater patient safety. Ethical discussion on BT at the 

end of life has been included in mandatory staff 

training. We plan to develop a tool to assess the 

impact of BT and criteria to establish the suitability of 

BT for individual patients. This requires a 

multiprofessional approach using the governance 

structure to bring about enhanced patient care within 

a hospice setting, looking at prognostic factors, 

quality of life measures and patient experience. 



The Impact of Advance Care Planning on End 

of Life Care in Nursing Homes 

Pype P.F. 1,2 , Dequidt D. 1 , Devos R. 1 , Hoste V. 1 

1 Palliative Home Care, Roeselare, Belgium, 2 University 

of Antwerp, Antwerp, Belgium 

Aim: To investigate the impact of advance care 

planning (ACP) on end of life care in elderly patients 

and their families in nursing homes and to investigate 

the obstacles and promoting factors for the 

implementation of a care model of ACP. 

Methods: A one year pilot study with a pre-post 

design in three nursing homes in Flanders, Belgium. 

Participants were all nurses, attending general 

practitioners (GP’s) and all patients and their families 

admitted during the one year period of the study. The 

intervention consisted of an educational session, a 

handbook (blueprint) of the care model and monthly 

contacts with coordinating nurses. Outcome measures: 

Primary outcome consists of a set of quality indicators 

(identification of a surrogate decision maker, ACP 

discussion with patient, medical chart notice, 

decision communication when admission to 

hospital). Secondary outcomes were focus group 

discussions with relatives, interviews with the 

coordinating nurses and measurement of the attitude 

towards death and dying amongst all nurses and GP’s 

using the multidimensional fear of death scale 

(MFODS). 

Results: Quality indicators show an overall 

significant improvement except for the transfer of 

documents during hospital admission ( data will be 

presented during the congress). Focus group 

discussions reveal appreciation for creating time and 

opportunities to have ACP discussions but a lack of 

clear communication about purpose and 

consequences of the discussions. MFODS shows 

significant change in ‘fear for others’. Interviews with 

coordinating nurses reveal obstacles and propositions 

for implementation. 

Conclusion: Using the procedural blueprint for the 

implementation of a care model for advance care 

planning in nursing homes shows an overall benefit 

on personal and institutional level. 

Practice implications: The blueprint will be 

optimized and re-implemented in a selection of 

nursing homes as a next stage of the Plan-Do-Check- 

Act quality improvement cycle. 



Flanders Study to Improve End-of-Life Care 

and Evaluation Tools (FLIECE Study). A 

Nation-wide Strategic Policy Research in 

Flanders, Belgium 

Cohen J. 1 , Deliens L. 1 , FLIECE-Consortium 


Care Research Group, Brussel, Belgium 

Aims: To promote better palliative and end-of-life 

care (EOLC) in Flanders the FLIECE project was 

conceived, with a threefold aim 

1) to assess how quality of palliative care and EOLC 

can be improved and to develop and test the 

necessary tools for this purpose, 

2) to test and improve existing evaluation tools for 

palliative care, and 

3) to evaluate societal changes in EOLC and end-oflife 

decision-making. 

Methods: A consortium of leading EOLC research 

groups from 4 universities was composed to work out 

FLIECE and solicit for funding from the agency for 

Innovation by Science and Technology. This 

presentation describes 

1) which aspects were included in the working 

program, 

2) how the strategic policy research requirements 

were met in order to get funding. 

Results: The project is constructed around the 3 

main strategic aims and contains 8 separate studies 

aimed at 

1) avoiding unnecessary hospitalization at the end of 

life, 

2) timely recognition of palliative care needs by GPs, 

3) improving EOLC communication, 

4) improving EOLC in residential care for older people, 

5) evaluation of the quality of EOLC in care homes 

and 

6) in acute geriatric wards, 

7) developing quality indicators in palliative care, and 

8) societal evaluation of EOLC and decision-making 

in Flanders. 

All studies are aimed at both obtaining scientific 

evidence and developing and delivering concrete 

products based on the evidence (eg handbooks, 

trainings, guidelines) aimed at improving EOLC in 

collaboration with relevant sectors and actors. 

An elaborate dissemination strategy was outlined to 

make sure results will reach relevant societal actors. 

The project received a 2.6 million € funding (2011- 

2014). 

Conclusions: By focusing on interventions to 

improve the quality of palliative and EOLC and on 

the testing of evaluation tools, the strategic aims of the 

FLIECE project focus directly on a combination of 

scientific research and societal dissemination of the 

results, hence, on effective scientific valorisation. 




Chemical Compatibility/Stability of 

Alfentanil with Commonly Used Supportive 

Drug Combinations Administered by 

Continuous Subcutaneous Infusions for End 

of Life Care 

Dickman A. 1 , Kean H. 2 , Rigge D. 2 , Ellershaw J. 1 , Weir P. 2 


University of Liverpool, Liverpool, United Kingdom, 

2 Quality Control North West, Stepping Hill Hospital, 

Stockport, United Kingdom 

Aim: To determine the chemical 

compatibility/stability of alfentanil combined with 10 

commonly encountered drug combinations in endof-life 


Methods: A previous study identified 10 frequently 

used combinations and representative doses of 

supportive (i.e. non-opioid) drugs. The same study 

identified typical opioid doses which were used to 

determine a dose of alfentanil. The chemical 

compatibility and stability of these mixtures with 

alfentanil hydrochloride has been studied. Analytical 

methods were developed to allow the separation of 

the individual drugs in the combination and detect 

possible degradants. The individual drug 

concentrations for each combination were monitored 

over a 24hr period. Syringes were prepared containing 

the drug combination as close to clinical practice as is 

practically possible. A McKinley T34 syringe pump 

was used to simulate infusion of the syringe 

preparation over a 24hr period. Samples were taken at 

set time points over 24hrs from the administration 

line and analysed by High Performance Liquid 

Chromatography-Diode Array Detection (HPLC- 

DAD) to obtain individual drug concentrations. 

Results: Eight combinations were identified as 

compatible. These combinations tested remained clear 

and free from visible particulate matter and the pH 

remained constant over the monitored period. Two 

combinations will require additional analysis as the 

HPLC peaks were small and difficult to distinguish. 

Conclusion: This research represents a small step 

towards providing technical information required by 

healthcare staff for the mixing of injectable medicines 

in the same syringe, as recommended by the National 

Patient Safety Agency in the UK. From our work it can 

be concluded that eight combinations of alfentanil 

and commonly used supportive drugs are chemically 

and physically stable and compatible for infusion 

over 24 hours. 



Using the Abocath versus Butterfly Needle in 

Subcutaneous Administration of Medication 

at Inpatients in a Palliative Care Unit 

Pereira C. 1 , Vilela I. 2 , Costa L. 1 , Monteiro C. 1 

1 Portuguese Oncology Institute, Palliative Care 

Service, Porto, Portugal, 2 Hospital da Ordem da 

Trindade, Porto, Portugal 

Aim: To evaluate local reactions and site duration 

comparing the use of abocath (polyurethane cannula) 

versus butterfly needle. 

Method: We drew up a clinical study with the sample 

paired with itself (matching pair). A patient was 

inserted with a butterfly needle 23G (Vygon VGreen) 

and in a parallel anatomic site an abocath 24G 

(Vasofix Right). In each administration the total in 

milliliters to be introduced was divided into two equal 

parts, administered simultaneously in the abocath / 

butterfly needle, bolus. In the syringe driver the total 

in milliliters was divided and two machines were 

placed. After the reaction / output of the device the 

study was completed. Data was collected through a 

structured questionnaire that included a scale of 

observation at the beginning of the study, each time 

there was a reaction. 

Results: The hypotheses were tested by chi square 

test with Yates correction for 95% confidence level. 

Participants were 30 patients, 19 males and 11 

females, mean age of 62.43 years. Only 20 patients 

completed the study. The reactions occurred with 

greater clarity between 3 and 4 days 15 (46.88%), 

however it was on the 3rd day that there were more 

reactions in the abocath 5 (50%) and the device that 

lasted longer was the butterfly needle, up to 8 days. 

With more events at 6-3days (30%), but it also 

presented a reaction immediately on the 1st day. The 

reactions that occurred with greater distinction, were 

accidental removal 8 (40%) and 8 (40%) blood in the 

line, respectively abocath in 6 (54.6%) and butterfly 

needle in 6 (54.6%). The other reactions consisted of 4 

(20%) in equal parts (redness, leaking, haematoma, 

obstruction of device). However redness only 

occurred in 1 (10%) of butterfly needle. 

Conclusion: In this study the differences were not 

significant, but the device that remained more days 

was the butterfly needle. 



Pharmacokinetics of Oxycodone after 

Intravenous and Subcutaneous 

Administration in Japanese Cancer Pain 

Patients 

Kokubun H. 1 , Yoshimoto T. 2 , Hojo M. 3 , Fukumura K. 4 , 

Matoba M. 5 

1 Kitasato University Hospital, Pharmacy, Sagamihara, 

Japan, 2 Chukyo Hospital, Nagoya, Japan, 3 Nagasaki 

University School of Medicine, Anesthesiology, 

Nagasaki, Japan, 4 Shionogi & Co., LTD., Clinical 

Research, Osaka, Japan, 5 National Cancer Center, 

Palliative Medicine & Psycho-Oncology, Tokyo, Japan 

Aim: Oxycodone (OXC) single injection has not 

been launched in Japan yet. We evaluated 

pharmacokinetics (PK) of OXC after intravenous (iv) 

and subcutaneous (sc) administration of newly 

developed OXC hydrochloride (HCl) injection in 

Japanese cancer pain patients. 

Methods: A multi-center open-label study was 

conducted. OXC HCl was administered intravenously 

or subcutaneously as constant infusion with dose 

titrated according to the pain intensity in cancer pain 

patients. Bolus iv administration was also conducted 

in 11 patients at the first dosing. PK parameters for 

plasma OXC and metabolites, noroxycodone and 

oxymorphone, were estimated using 

noncompartmental method. In addition, influencing 

factors for clearance in the steady state (CLss) of OXC 

after iv and sc infusion were assessed by regression 

analysis and Student´s t test. 

Results: The 11, 10 and 20 patients were evaluated 

for PK after bolus iv administration, constant iv and sc 

infusion at the first dosing, respectively, and the 69 

and 19 patients were evaluated after constant iv and 

sc infusion in the steady state, respectively. The 

estimated PK parameters of OXC were as follows: CL 

(L/hr) 36.2 ± 12.9, AUC 0-6 (ng.hr/mL) 98.25 ± 22.57, 

and t1/2z (hr) 3.28 ± 0.675 in bolus iv administration; 

CLss (L/hr) = 26.2 ± 10.8, and AUC 0-12 (ng.hr/mL) 

186.0 ± 53.77 in constant iv infusion; CLss (L/hr) = 

29.6 ± 11.0 and AUC 0-12 (ng.hr/mL) 175.4 ± 48.64 in 

constant sc infusion (mean ± SD, adjusted to 5 mg 

dose for bolus administration and 1 mg/hr infusion 

rate for infusion). CLss were significantly correlated 

with age, body weight and creatinine clearance, and 

CLss in male were significantly higher than CLss in 

female. 

Conclusion: PK of OXC were evaluated after OXC 

HCl injection in Japanese cancer pain patients for the 

first time. These results provide the important 

information for the clinical use of OXC HCl injection. 

This study was funded by Shionogi & Co., Ltd. 



Families’ Experiences of Bereavement Support 

Lindqvist E. 1 , Flodin G. 1 , Rasmussen B. 2 

1 Axlagården Hospice, Umeå, Sweden, 2 Umeå 

University, Umeå, Sweden 

Background: Previous projects at a hospice in 

northern Sweden have shown that the many family 

members felt lack of information and support after a 

relative’s death. Thus to improve the bereavement 

support for families, a new information folder and 

routines for telephone contacts were developed 

Aim: The aim of this study was to investigate families’ 

experiences of a new bereavement support system at a 

hospice in Northern Sweden Method In the spring of 

2009 a folder was designed providing information 

about grief, the practical tasks to be pursued after 

death and contact information to supportive and 

helpful persons and agencies, and a letter informing 

that a hospice nurse would call them within a month 

after the dead of their relatives. Ten family members 

were then randomly selected for a telephone 

interview. The content of the conversations were 

written down and analysed using content analysis 

Result: The telephone interviews lasted from 9 to 87 

minutes (m 36 minutes). The family members 

appreciated the information contained in the folder, 

and the phone call from the hospice nurse. It helped 



them to become ready to deal with the funeral and 

other practical tasks. All family members appreciated 

the phone call about a month after the death of their 

relatives. Content of the phone interviews related to 

the funeral, the time after death and the time at a 

hospice. Two of the family members appreciate 

repeated calls or other forms of support. 

Conclusion: All family members appreciated the 

bereavement support system and experienced it as 

helpful in dealing with the practical aspects after death 

and in moving forward in the grieving process. It was 

especially appreciated that the hospice nurse took the 

initiative for telephone contact. A more detailed 

description of the content of the bereavement folder 

will be presented at the EACP conference. 

The study was funded by the Foundation for Hospice 

Care, Umea Sweden 



The Gifts of Grief /Los Regalos del Pesar 

Sobonya N. 1 

1Shining Light Productions, Oakland, CA, United 

States 

This 90 minute workshop explores the powerful and 

mysterious nature of grief using the educational 

documentary The Gifts of Grief (Los Regalos del 

Pesar subtitled in Spanish) as a teaching tool to 

identify the physical, emotional and spiritual affects 

of grief, the resources that help us through our losses 

and to discover for ourselves the extraordinary 

opportunities our own losses may reveal. In this film, 

Isabel Allende along with six other remarkable people 

share their journeys through their personal losses 

embracing their pain, learning to live with their loss 

and now engaging in life with more compassion, 

courage and awareness. 

Objectives: 

1) To demonstrate and validate that grieving is a 

natural, healthy process from which we can not only 

recover, but be changed by in deep and profound 

ways. 

2) To identify the physical, emotional and spiritual 

affects of death and grief. 

3) For participants to identify the resources that help 

them through their losses. 

4) For participants to discover for themselves the 

possibility of true gifts emerging 

from their own losses. 



A Bereavement Service for Children, 

Adolescents and Young Adults Run by a 

Charity with Volunteers. Analysis of a Rock 

Climbing Programme for Bereaved Boys 

Freiherr von Hornstein W. 1,2 , Bilger U. 2 , Mausch M. 2 

1 Specialist Palliative Care Service Cavan & Monaghan, 

Health Service Executive Dublin North East, Cavan, 

Ireland, 2 Hospizgruppe Freiburg e. V., Freiburg im 

Breisgau, Germany 

Background: The hospice movement in the 

German university city of Freiburg (Hospizgruppe 

Freiburg e. V.) established itself as a charity of 

volunteers in 1991 looking after terminally ill patients 

and families. In August 2003 a bereavement service 

for children and adolescents with an internet 

platform was developed. Since 2005 a rock climbing 

(RC) programme for bereaved boys was initiated. 

Objective: The aim of this study is to appreciate the 

relevance in supporting the grieving process with RC 

and the importance of belonging to such a group. Can 

RC help to grief in a healthy way and prevent 

pathological bereavement? 

Method: It is an explorative study because there is 

little research done to analyse the influence of sports 

therapy in relation to bereaved boys. Interviews with 

qualitative questions were done with the bereaved 

boys. To increase the objectivity a further interview 

was done with the surviving parent. 

Results: The study showed that RC concurred a 

relevant effect especially in the initial part of the 

grieving process. It allowed diversion from the actual 

loss through creating a new protected space. On the 

other hand through the intense concentration while 

climbing the deceased person was included thus 

preventing denial. Anger and enragement could be 

canalized and controlling anxiety could be learned. 

RC particularly gratified courage, will power, 

concentration etc. It helped to achieve a rebuilding in 

self-confidence. The average length of participation 

was two years. 

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Conclusion: The results justify continuation of RC 

in a protected space where bereavement can be 

actively encountered while experiencing joyful 

moments. Those joyful moments may often cause 

offense in the bereaved families. The boys mutually 

support each other and share a common empathy 

which is enhanced by belonging to the group, thus 

preventing exclusion. Reflection and concentration 

to continue the journey, including the memory of the 

deceased, helps to keep an enthralling balance. 



Fireworks and Feelings - Reaching out 

Creatively to Young People through the Storm 

of Bereavement 

Gardner D. 1 , Sullivan P. 1 

1 Saint Francis Hospice, Family Support Services, 

Romford, United Kingdom 

Children and young people are often shielded from 

the initial trauma of a terminal diagnosis of a parent 

or significant care giver, resulting in less time to come 

to terms with an imminent death than older family 

members. This may affect their bereavement. 

Fireworks and Feelings children´s project encourages 

early, open support amongst peers. 

To enable a sharing of experiences between bereaved 

young people (aged 5-18 years), using choice and free 

expression. We brought a group of bereaved young 

people together for a day. They used creative arts as a 

medium for expression; we had a shared, social lunch 

in the middle of the day. Each chose one art work 

from the day for display in an exhibition of their 

works, later, continuing the sharing theme. 

Recruitment by invitation of recently (within 1 year) 

bereaved young people, to a day with: 

A safe environment 

Clear expectations 

A choice of artistic materials for all levels of ability 

Support and encouragement to express, with minimal 

instruction 

Group lunch around a table 

Follow up exhibition and celebration for all 

participants and families 

A positive experience of peer sharing which extended 

beyond the day with many of the young people 

swapping email address and phone numbers. Keeping 

in touch, sharing, understanding individual grief 

feelings and developing peer support enhanced well 

being and psychological health. The Exhibition 

reunited this group, and shared with family and 

friends the celebration of the special person and their 

achievement of expression. 

Involvement in the arts assists in the development of 

mental and social health and well-being. It allows 

freedom of expression and playfulness. Young people 

create social and psychological bonds and 

relationships extending beyond the art day. There is 

exploration and expression of deeper levels, without 

words, providing an alternative method for those who 

may struggle to put words to the feelings around such 

an important and significant loss. 



Narrative in Bereavement; Death and Loss 

Goodhead A.F. 1 

1 St Christopher’s Hospice, Chaplaincy and Spiritual 

Care, London, United Kingdom 

A London hospice supports 850 patients daily across 5 

ethnically and culturally diverse boroughs. In any 

year around 1650 patients die under the hospice’s 


The project assessed the content and form of narrative 

writing used by family members to describe thoughts 

and emotions and, make sense of loss around the time 

of bereavement and, twelve months after 

bereavement. 

This was an empirical study of 859 separate pieces of 

writing; 500 ‘leaves’ from a ‘tree of life’, 

predominately produced around the point of 

bereavement and 359 ‘slips’, sent to the hospice 

following an invitation to a memorial service, held 12 

months after death. The study analysed unprompted 

writing to ascertain how people facing bereavement 

and bereaved people contextualise death. 

The major themes of the analysed writings were noted 

and common ideas within these themes drawn out. 

The analysis considered the content of each piece of 

writing and the form which writing took; Continuing 

bonds, recalling the dead person in the present, 

setting the dead person in heaven, reuniting the dead 

person with deceased loved ones, hoping for reunion, 

and marking an anniversary were among the main 

themes noted. Writing is a quasi public process and 

authors, leaving their written contributions behind 

allowed others a glimpse into a private experience of 

bereavement. Common terms and language was 

utilised by writers, suggesting that a ‘folk depository’ 

of terms is available in bereavement to describe death, 

loss and the experience of bereavement. 

This research indicates that death is a social 

experience in which a dead person is mediated to 

others by those close to the deceased person. It has 

also suggested writing is a helpful means of personal 

support during bereavement and, in some way brings 

the deceased person back to the present. 

No external or internal funding 



Informal Caregivers Grief: Prospective Study 

in Families Followed in Palliative Care 

Coelho A.M. 1 , Delalibera M. 2 , Barbosa A. 3 

1 Hospital de Santa Maria, Unidade de Medicina 

Paliativa, Póvoa de Santa Íria, Portugal, 2 H. S. Maria, 

Lisboa, Portugal, 3 Universidade de Lisboa, Lisboa, 

Portugal 

Palliative care provides bereavement support to 

families of deceased patients, recognizing that 

caregivers are particularly vulnerable to experience 

intense levels of distress following the loss. It is 

expected that 10-20% of bereaved will develop 

Prolonged Grief Disorder (PGD), whose criteria are: 

intense longing and yearning for the deceased for a 

period exceeding six months; emotional, cognitive 

and behavioral symptoms; social and occupational 

impairment. The purpose of this study is to determine 

the incidence of Prolonged Grief Disorder among 

caregivers whose relatives were followed in a Palliative 

Care service. 

Method: Longitudinal, prospective, cohort study. A 

total of 73 bereaved families responded to the 

Prolonged Grief Disorder Evaluation Instrument (PG- 

13) after 6 and 12 months following the loss. 

Results: The sample is mostly female (78.1%), 

widowed (61.4%) and with mean age of 58.37 (SD: 

13.99) The incidence of PGD in the first evaluation 

(mean time of bereavement: 6.46 months) is 28.8%, 

decreasing to 15.1% in the second phase (13.93 

months). The prevalence of PGD declined 

significantly over time (x 2 = 4.20, p = 0.04). In the 

second evaluation, six bereaved individuals 

continued to meet criteria for a diagnosis of PGD, 15 

remitted and four new (incident) cases emerged. The 

high incidence of PGD in the first assessment suggests 

that this grief severity is highest on average early on 

post-loss. However, the important differences in 

values that occur after 12 months suggest time is 

important in distinguishing between those at risk for 

enduring distress and those whose grief 

symptomatology will resolve with time. Future 

research is needed to examine how each of these 

presentations influences long-term functioning 

among bereaved survivors. 



Who Searches for Support on Grief in 

Palliative Care? 

Coelho A.M. 1 , Delalibera M. 2 , Barbosa A. 3 


Paliativa, Póvoa de Santa Íria, Portugal, 2 Hospital 

Santa Maria, Lisboa, Portugal, 3 Universidade de 

Lisboa, Lisboa, Portugal 

Objective: This study intent to feature grief counsel 

in respect to the factors of population´s vulnerability 

and services adhesion. 

Methodology: In this descriptive study, we examine 

84 members of bereaved families accompanied for an 

Intra-Hospital Support Team in Palliative Care. For 

the characterization, we used an inventory of risk 

factors, developed from the literature review, which 

was filled by professional staff based on knowledge 

they have about the patients´ family. Data collection 

was occurred since January 2009. 

Results: Most of the participants were females (81%), 

with mean age of 45.8 (6-84). Adult population is 

largely widow (48.4%). Most people benefited of a 

previous intervention, at least through a counsel 

evaluation (52.3%). The majority (62.0%) of relatives 

asked for support by themselves; of these, 40.8% 

started support in the prior period of the loss and 

44.9% until 3 months after loss. Currently in 

attendance are 34.2% of bereaved, with an average of 

11.7 months of mourning (D.P.: 7.33; 1-36). During 

this time, it was granted clinical discharge to 47.6% of 

people, and 14.3% abandoned the counsel. The 

methods of intervention are individual and in group; 

this last approach was applied in 20.2% of people. 

29.8% of the bereaved were referred to psychiatric 

consultation. Counsel adhesion appears significantly 

associated with marked dependency (x2 = 5,529, p = 

0.028), the existence of psychopathological 

antecedents (x 2 = 7,075, p = 0.011), previous 

unresolved grief (x 2 = 5,531, p = 0.028) and social 

isolation (x 2 = 4,398, p = 0.050). 

Conclusion: This suggests that most part of relatives 

search for support by their own initiative in the prior 

period of loss or until 3 months after death. The 

bereaved that remain in complaince are mainly 

widows, with important personal antecedent, as well 

as the perception of lack of social support. 



Qualitative Assessment of a Group 

Intervention in Grief 

Coelho A.M. 1 , Delalibera M. 2 


Paliativa, Póvoa de Santa Íria, Portugal, 2 Hospital 

Santa Maria, Lisboa, Portugal 

The group intervention in grief is a setting of emotional 

support where participants can share their experiences, 

express their feelings and share resources in order to 

relieve suffering and adapt themselves to new 

situations. In this qualitative study, we intend to 

describe the beneficts of this experience for five 

bereaved persons who completed 14 months of 

intervention in a closed, supportive-expressive group. 

The sessions were held on a fortnightly period, 

according to the integrative model, non-directive and 

in co-therapy. The participants were selected based on 

motivation and characteristics of the grief process in 

order to create an homogeneos and specialized group. 

In the final session, they were asked to reply in writing 

to some open questions focused on the effects of this 

intervention. In respect to the group experience, they 

emphasized aspects such as the universality of grief 

feelings, motivation for self-revelation, the 

development of self-confidence and encouragement 

for the reconstruction of life. The perception of group´s 

evolution is based on greater cohesion and learning. In 

a message addressed to another bereaved person, they 

reinforce the need to accept help and to normalize their 

feelings. Finally, in their prospect of future, they 

imagine themselves with greater resilience to new 

difficulties, with the intent to enjoy the pleasures of life, 

greater tolerance and more capacity to love. In 

conclusion, according to qualitative assessment of the 

participants, the support group has therapeutic means 

due to involvement and mutual-help, that promotes 

adaptation to grief through a process of meaning 

reconstruction and personal growth. 



Thanatologic Counseling, Children with 

Leukemia and Solid Cancer 

Mortero A. 1 , Villa B. 2 , Holguin-Licón M. 2 

1 ISSSTE, Pscicology, Mexico, Mexico, 2 Cepamex, 

Mexico, Mexico 

When a child gets ill with a very important illness, it is 

important to be aware of the importance and depth of 

the feelings that arise and that the parents try to avoid 

that their children knows the truth. 

A story tale “The story of Lucecita a girl with leukemia” 

is offered as a resource to allow the child to recognize 

her illness; names it, represents it and locates it. 

The story was designed to support: the process of 

acceptance of the diagnosis and illness, to help the 

insertion of the child to the hospital environment, to 

favor the recognition of the process and treatment of 

the illness. It also sustains to unify the information in 

the space physician-family avoiding confusions and 

misunderstanding and to modify the emotionalpsychological 

state of the child and family. 

Four years after the implementation of the story, we 

learned that it is possible to guide family-child to 

make plans, receive emotional support felling that is 

not struggling alone and insolated, to may identify 

feelings related with the medical staff and to maintain 

hope and meaning of life. 



Withdrawn 



Demonstrate the Difference Impact of 

Hospital Nurse Palliative Care Education 

Hough J. 1 , Groves K.E. 1 , Baldry C. 1 

1 West Lancs, Southport and Formby Palliative Care 



Background: In this area qualified hospital nurses 

now undertake a 6 day palliative care course similar to 

the course that has been rolled out to district nurses 

for a number of years. 

Aims: The aim was to look at the skills which hospital 

nurses feel they have gained from attending this 

course and the experiences they have had in dealing 

with palliative care issues in the acute hospital setting 

subsequent to this. 

Methods: A qualitative thematic analysis of 30 case 

studies produced by participants on the course was 

undertaken. Common themes and information 

regarding the aspects of the course which appeared to 

be most beneficial for participants was sought. 

Results: Participants found that they had more 

confidence in dealing with difficult communication 

issues when they may have avoided having certain 

conversations in the past. They felt empowered in 

discussing cases with medical staff. Nurses felt they 

were now able to ask more relevant questions about 

symptom issues. With regard to the Gold Standards 

Framework, participants were able to see the benefits 

for patients of using the framework across all settings 

and not just primary care. Advanced care planning 

and discussing preferred priorities of care had tended 

to be avoided prior to the course. Staff on certain 

wards tended to think that, because their patients 

were mainly non-cancer, they had few palliative care 

needs, but became aware following the course that 

this is not true. 

Conclusion: From the results of the analysis, it 

would appear that this course is of sufficient benefit to 

qualified hospital staff to justify releasing them from 

their ward duties for 6 days for the course. 



‘You can do it!’ Training All Staff in Advance 

Care Planning Impacts on Preferred Place of 

Care 

Baldry C.R. 1 , Groves K.E. 1 




Background: The End of Life Care Strategy 2008 

recommends that patients have opportunities to be 

heard & make choices by Advance Care Planning. 

However staff lack confidence in initiating 

conversations about the future, & struggle to make such 

opportunities happen. Staff are expected to undertake 

these conversations, without fully understanding the 

processes and legalities of Advance Care Planning. 

Aims: To equip a critical mass of healthcare staff from 

all settings to understand Advance Care Planning, be 

able to open up the conversation, enable patients to 

voice their wishes and preferences, & ensure that they 

are recorded & communicated adequately. 

Method: Cancer Network funding enabled the 

development of a free, multiprofessional sessions led 

by 2 trained facilitators & designed to meet a variety 

of learning styles and preferences. Resources included 

a workbook & web based resources. 

Results: 225 healthcare professionals have 

undertaken the workshop & have a basic 

understanding of ACP. 77 were from care homes, 43 

specialist palliative care services, 176 hospital, 51 

community nurses & 11 family doctors. 

Conclusion: When rolling out new models the tried 

& tested method is to educate & employ the few to 

teach the many. The present economic climate was an 

opportunity to try something different, to reach out 

to the many with the expectation that they will all 

undertake this role wherever they work. In this way 

the culture of an organisation or community is 

changed by the expectation. Having those 

conversations is not reserved for those in specific 

positions. It will be some time before the effect of this 

work is realised & will be measured by increasing 

number of patients choosing to make their wishes 

known in advance by the available means. 

Already, recording choices has changed the 

expectations of the community where a preferred 

place of care of home has now increased to 90% of 

those asked! 



Needs Assessment: Does the Education in 

Palliative Care Improve the Knowledge about 

the Needs that Should Be Assessed? 

Capelas M.L. 1 , Flores R. 1 , Guedes A.F. 1 , Paiva C. 1 , Roque 

E. 1 , Pingarilho M.J. 1 



Aim: 

· To analyse if the education in palliative care 

improves the knowledge about the needs that should 

be assessed 

· To identify others factors that may influence the 

knowledge about the needs that should be assessed. 

Methods: 

· We created 2 groups of subjects: one with 27 

students of the Master Course in Palliative Care 

(group 1) and other group with 26 students of others 

Masters Courses (group 2) 

· We developed one list with 32 needs that should be 

assessed and we asked the subjects to choose which 

they thought that must be assessed 

· We asked the students before the curricular unit of 

the Principles and Philosophy of PC(T1), immediately 

after (T2) and at the final of the master course (T3) 

· We analysed if the education in palliative care, the 

gender, the profession and the work in palliative care 

affected the answers. 

Results: 

· From T1 to T2 the group 1 increased the number of 

the needs that they thought should be assessed 

(T1=27.8 ±6.2; T2=30.9 ±4.6)(p< 0.05) but there 

weren’t differences between T2 and T3 

· All the needs were identified by the majority of the 

subjects of the group 1 while 4 needs weren’t 

indicated by the majority of the subjects of the group 

2 

· More needs were indicated by the group 1 (29.7 ±4.6) 

than by the group 2 (21.2 ±8.7) 

· The physicians indicated more needs (31.6 ±1) than 

the nurses (23.7 ±8.4) and the psychosocial group 

indicated more needs (32 ±0) than the nurses. 

Conclusions: 

· The specialized education in palliative care seems to 

improve the knowledge about the needs that should 

be assessed in the terminal ill 

· In this study the physicians indicated more needs 

that should be assessed than the nurses and these 

indicated less needs than the psychosocial group 

· No other factor was found that influenced the 

answers. 



End of Life Care Training for Adult 

Community Nurses 

Marshall J. 1 , Wood D. 2 , Cheung C.-C. 3 , Bisset M. 3 , Hutton 

S. 3 , Stirling L.C. 3 

1 Imperial College London, Palliative Care, London, 

United Kingdom, 2 University College London 

Hospital, Adolescent Urology, London, United 

Kingdom, 3 Camden, UCLH & Islington ELiPSe 

Palliative Care Team, London, United Kingdom 

Aim: To narrow the gap between the knowledge and 

skills of specialist nurses practicing end of life care 

(EoLC) and generalist nurses. 

Method: A Clinical Nurse Specialist in Palliative Care 

delivered an educational programme in EoLC to adult 

community nurses working in an urban setting. 

The programme comprised 15 small workshops (85 

nurses) and 34 individual clinical coaching sessions 

that led to 21 joint community visits. 

Feedback was gathered on both the workshops, and 

the participant’s own progress using a self-assessment 

questionnaire following joint community visits - 

exploring confidence in communication, Gold 

Standard Framework (GSF), physical symptom 

assessment, Liverpool Care Pathway (LCP) and care in 

the last days of life. For each domain participants were 

asked to state their ability or confidence using a five 

point scale from strongly agree to strongly disagree. 

Results: Nurses initially expressed anxieties relating 

to syringe driver use, commencement of the LCP and 

limited exposure to EoLC patients. They felt that they 

lacked confidence in communication, physical 



assessment and symptom control. 

The workshops were evaluated as good or very good 

by 95% of participants, with no negative feedback. 

The self assessment questionnaire showed marked 

improvement in each of the domains following 

clinical coaching - see table 1. 

Confidence in: Strongly Agree Not Disagree Strongly 

Agree Sure Disagree 

Communication -15 +46 -26 -5 0 

GSF 0 +15 -8 -7 0 

Assessment +8 +7 -10 -5 0 

LCP +4 +3 -7 0 0 

Last days of life -10 +48 -28 -10 0 

[Table 1 - % Change in participant confidence] 

Conclusion: Some general nurses lack confidence in 

caring for patients requiring EoLC. This can be 

improved effectively with 1:1 clinical coaching and 

clinically focused teaching. Reductions in numbers 

who had high confidence before coaching may 

represent a realignment of expectations following 

coaching perhaps suggesting initial overconfidence. 



Continuous Training in Palliative Care for 

Professionals in a University Hospital 

Martínez M. 1 , Urdiroz J. 1 , Larumbe A. 1 , Carvajal A. 2 , 

Arantzamendi M. 2 , Portela Tejedor M.A. 1 , Centeno C. 1 


Navarra, Pamplona, Spain, 2 School of Nursing, 

Universidad de Navarra, Pamplona, Spain 

To integrate Palliative Care (PC) into a University 

Hospital requires extensive and continuous education 

and preparation for all participating professionals. 

The work with advanced ill patients is difficult for 

professionals and very often the lack of training in 

specific skills can difficult a good symptom control 

and prevent a good care of patients. A PC consultant 

service is not established to attend a little number of 

patients. The aim of the service is to achieve the 

excellent attention of all the PC patients in the 

hospital. That is possible with demonstrative working, 

counseling and non formal interaction with different 

professionals, and with formal processes of learning. 

To improve the training of professionals, a PC 

Consultant Team of a University Hospital started in 

2004 a continuous training program. The aim of this 

presentation is to compile the experience of training 

that our team has in one academic year (2009-2010). 

The team consists in 2 doctors, 2 nurses and 1 

psychologist. The number of training processes given 

by the team was 7. This includes a weekly 

bibliographic session, a monthly interteams session 

(training sessions for PC teams in the region), one 

annual course in PC for doctors, two for nursing staff, 

specific sessions in the continuous training program 

of oncology fellows and nurses and several other 

sessions requested by specific services or professionals 

(i.e. chaplains). We also participate in the specific 

training of oncologist fellows, completing their 

training with a 2 months rotation in our service. 

In each of those processes an accreditation by the 

local administration is required in order to certificate 

the training. 

The total number of hours given in formal processes is 

160. The number of different people attending any 

kind of session is 135. 

The satisfaction of the processes is also evaluated. We 

have obtained very good scoring in usefulness and 

quality of training given. In all the courses given the 

global satisfaction scores are above the excellence 

(scores ≥8). Overall findings revealed that 

professionals need and are receptive to a variety of 

continuing education programs. 

An important part of the work time of a PC 

Consultant Service is the training of other 

professionals, and that is part of the team impact. In 

this presentation the training program will be detailed 

with the results of satisfaction questionnaires and 

future projects in order to ameliorate the training 

process. 

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Opening the Gate Electronically! An elearning 

Course for Raising Spiritual 

Awareness 

Groves K.E. 1 , Baldry C.R. 1 , Smith B. 2 , Sumner K. 2 , Rimmer 

D. 2 

1 Terence Burgess Education Centre, Queenscourt 

Hospice, Southport, United Kingdom, 2 Edge Hill 

University, Ormskirk, United Kingdom 

Background: Following an audit of spiritual and 

religious needs assessment and care provision across 

one cancer network area in the north west of England 

in 2006 it was clear that most health professionals 

working within specialist palliative care services felt 

that they lacked confidence, and would benefit from 

further education, in spiritual support. The cancer 

network supported the development of an interactive 

learning package for staff, ‘Opening the Spiritual 

Gate’, to meet this expressed need. 

Aim: To raise awareness of the spiritual and religious 

needs of patients and families 

To help staff feel more confident in discussing and 

assessing them. 

To provide this education in a format which is easily 

accessible & available to staff 

Method: A joint project between a cancer network 

and a university technology department in the north 

west of England resulted in the conversion of the 

interactive awareness raising course of four sessions, 

originally delivered face to face (on one day or as a 

series), into an online course based on a constructivist 

learning format. 

Results: The iterative process involved in the 

conversion and the resulting course along with the 

qualitative analysis of the pilot are described in this 

poster. The results show that the online platform 

allowed participants to access the course at at time to 

suit themselves, from anywhere which had internet 

access and allowed them to learn at their own pace 

with time for reflection. 

Conclusion: Clearly e-learning does not suit 

everyone, but this project has shown that conversion 

of even a course reliant on group interaction is 

possible as long as sufficient material and activity, to 

meet all learning styles and preferences, is built in and 

the course is organised to allow small cohorts of 

people to form a learning community for its duration. 



Palliative Care Volunteering and Specific 

Competencies 

Porchet F. 1 , Burki C. 2 , Hoenger C. 2 

1 Centre Hospitalier Universitaire Vaudois (CHUV), 

Service Formation Continue, Lausanne, Switzerland, 


Lausanne, Switzerland 

Context: On the base of the catalogue for palliative 

volunteers’ competencies, elaborated in 2008 in the 

Vaud Canton, a 8 days training has been set up 

through a collaborative process between the Cantonal 

Program (CP) of public health and 8 partners 

(hospices, regional hospitals, university hospital, 

specialized institutions for mentally disabled people, 

Cancer League, Caritas) 

Training content: One day pro month, it covers 

the following topics: 1.Communication 

2.Teamworking 3.Rituals 4. Spirituality 5. Biography 

6. Bereavment 7. Issues and challenges in PC 8.PC at 

home. A large part is dedicated to the development of 

volunteer’s identity through a questioning about 

giving and receiving, doing and being, death and 

dying, boundaries 

Trainees’ characteristics: From 2009 to 2010, 97 

participants (6 groups), between 24 and 65 years old, 

from diverse sociocultural backgrounds, among 

which 50% practice a professional activity. Besides the 

training, they volunteer within institutions partners 

of the CP 

Satisfaction’s evaluation: A questionnaire 

distributed during the last day shows a high level of 

satisfaction. 70% estimate that the content meets 

their needs completely, 25% mostly and 5% partially. 

The most positive points: authenticity and listening 

capacities of the teachers, diversity of the topics, 

respect, fruitful exchanges, usefulness of the practical 

exercises 

Evaluation of the training impact on clinical 

practice: 3 months min after the end of the training, 

a questionnaire is distributed to the pc trained 

volunteers to assess the coherence between courses 

content, pedagogical methods and patients/families 

needs. This 2 nd evaluation’s results will be published 

in spring 2011 

Continuous training: The CP organizes an annual 

plenary session (about 100 participants) and 5 halfday 

workshops on different topics: breathing, 

moving, intellectual disability, childhood and severe 

illness, networking, therapeutic distance, 




Hospice Physician Home Visit 

Shoemaker L.K. 1 , Ahmed Khan M.I. 1 , Induru R.R. 1 , 

Soriano M.A. 1 , Walsh D. 1 , Russel M. 1 , Ang S.K. 1 , Karafa 

M.T. 2 , Davis M.P. 1 , Lagman R. 1 , Le Grand S. 1 , Gutgsell T. 1 , 

Aktas A. 1 , Schleckman E. 1 

1 Cleveland Clinic Taussig Cancer Institute, Department 

of Solid Tumor Oncology, Harry R. Horvitz Center for 

Palliative Medicine and Supportive Oncology, 

Cleveland, OH, United States, 2 Cleveland Clinic Lerner 

Research Institute, Department of Quantitative Health 

Sciences, Cleveland, OH, United States 

Background: Currently, literature reveals no studies 

of physician home visits (HV) in hospice. HV may 

influence quality of life and increase likelihood of 

home death. A HV team could prevent unwanted 

hospitalizations. Our study objective was to describe 

hospice physician HV. 

Methods: Data was collected on 30 consecutive 

patients between 2 - 7/2010 using a standardized 

form. Three palliative medicine fellows collected data 

prospectively on 18, 7, and 5 patients from medical 

records, hospice team, patient interview, and physical 

exam. Estimated prognosis was subjective. 

Results: Most patients were caucasian women; 

median age 67 years (range 26-96). 40% had an ECOG 

(Eastern Cooperative Oncology Group) performance 

status of 4. Estimated prognosis weeks-months. 60% 

had cancer. 78% HV occurred at home; the remainder 

in alternative living. 73% HV were requested by 

hospice case managers. The median visit was 60 

minutes (range 20-120); the median for travel 

distance and time were 20 miles and 30 minutes. HV 

reasons were: education, symptom management, 

psychosocial support, and family meeting. There were 

2 problems identified pre-visit but after HV, a median 

of 5. 1.9 symptoms (range 0-7) were managed per HV. 

93% were helpful to patient and/or family, 90% 

appropriate and 73% medically necessary. 

Conclusions: HV were time consuming and also 

considerable travel, and cost. Only two HV resulted in 

admissions. Physicians provided both education and 

symptom management. Symptom control was 

usually pain, although 27 symptoms were identified. 

Medications were important; all HV included drug 

review and 2/3 drug change. Physicians in a hospice 

team had unique responsibilities and identified 

important issues on HV. These included: medication 

review, change of medication, family emotional 

support, goals of care, resuscitation, crisis 

management, symptom crisis, actively dying. 

Physician HV are an important intervention. 



End of Life Care Education: The Experience 

and Needs of Emergency Ambulance 

Clinicians 

Gakhal S. 1 , Munday D. 1 , Cole R. 2 , Bronnert R. 1 , Seeley 

S.K. 3 , Stuart P. 4 , Pettifer A. 5 


Coventry, United Kingdom, 2 West Midlands 

Ambulance Service, Dudley, United Kingdom, 


4 Myton Hospices, Warwick, United Kingdom, 

5 Coventry University, Coventry, United Kingdom 

Aims: Ambulance personnel are often called to 

attend terminally ill patients and are involved in 

making resuscitations decisions for them, yet few 

studies have reported their experiences of this work or 

the training they have received for it. We aimed to 

explore ambulance clinicians’ previous training in 

end of life care and their self-perceived training needs 

to inform the development of an online training tool. 

Design: 200 questionnaires were distributed to 

emergency ambulance clinicians working within a 

large ambulance trust. Questions about previous 

training in end of life care and self-perceived training 

needs were included. Data was analysed using 

descriptive statistics with SPSSv18. 

Results: 107(54%) completed the questionnaires. 

76/105(71%) reported having no previous training in 

the clinical management of terminally ill patients and 

63/106(60%) had received no training in how to deal 

with do not resuscitate (DNAR) orders. Only 

58/105(54%) felt confident that they possessed the 

knowledge and skills to make the correct decisions 

regarding cardiopulmonary resuscitation (CPR) and 

69/104(65%) in their ability to provide appropriate 

clinical management to terminally ill patients. 

103/106 (96%) would welcome training in the 

management of terminally ill patients: 100/105 (94%) 

in legal and ethical issues; 86/105(80%) in appropriate 

CPR decisions, 85/105 (79%) in accessing advice from 

other health care professionals to assist in decision 

making and 78/105 (73%) in developing skills for 

communicating with patients and relatives. 

Conclusion: Few ambulance clinicians had received 

training in clinical management or resuscitation 

decisions for terminally ill patients, whilst most 

would welcome such training. A further project is 

planned to explore ambulance clinicians’ 

management and decision-making and, to develop a 

decision support tool to enable effective management 

of terminally ill patients. 

Funding: NHS West Midlands 



Sharing Innovation to Improve Access to 

Specialist Palliative Care 

Burrows L. 1 , Toland L. 1 , Godfrey S. 1 , Sen M. 1 , Miah Y. 1 



Working innovatively to modernise services and 

promote choice for patients, our hospice provides an 

enhanced telephone triage service. Developing the 

service in line with the emerging national agenda 

enabled us to adopt enhanced methods of assessing 

complex need, provide rapid access to our specialist 

services and meet increasing demand. 

The uniqueness and success of our telephone triage 

service has been of significant interest to other 

providers of palliative care. In response to the number 

of requests we received for information and facilitated 

visits to observe the service in action, we decided to 

produce a DVD and accompanying training package 

to support others in establishing a similar service. 

A working group was formed to guide the DVD 

project from the initial writing of the bid proposal to 

the marketing of the final product. The remit of the 

group was to work collaboratively with partners and 

service users to produce an informative learning tool 

to support others in setting up and delivering a 

telephone triage service. Partnership working 

involved the triage team, the wider clinical team, the 

education team, professional service users from the 

primary care team and acute sector, and patient 

service users. Filming was carried out in the hospice, 

the community, acute hospital and patients homes. 

As well as being an enjoyable teamworking venture, 

the project had many positive outcomes. Our vision 

and team development of accessible, flexible services 

that keep pace with demand was affirmed. The benefit 

of working in partnership with professional and 

patient service users to demonstrate the value of 

services provided was clearly evident; as was the role 

of education in sharing ideas and best practice. Most 

importantly, the project gave us confidence that in 

developing an educational tool to facilitate the 

sharing of our innovative service design, we would 

advance rapid access to palliative care, and improve 

outcomes and promote choice for more patients. 



Which Changes Experience Participants of an 

Interprofessional and Multidisciplinary 

Palliative Care Education (MAS Palliative 

Care)? - A Pilot Study 

Bollig G. 1,2 , Ester A. 3,4 



2 Bergen Red Cross Nursing Home, Bergen, Norway, 

3 Sunniva Clinic for Palliative Medicine, Bergen, 

Norway, 4 Doctor’s Office Hyllestad, Hyllestad, 

Norway 

Objective: Aim of the study was to investigate 

changes that participants experienced in connection 

to a masters degree in Palliative Care. 

Methods: 12 former students of an interprofessional 

Palliative Care education (MAS Palliative Care) at the 


University of Klagenfurt/IFF Vienna, Austria were 

invited to participate in a group discussion. They were 

asked which changes they experienced in connection 

to their masters degree in Palliative Care. A secretary 

took notes during the interview. Based on the notes 

categories were established by the two authors. 

Methods used were qualitative description and 


Results: The qualification which the participants 

gain during their studies led both to changes in the 

professional and private surroundings. Participants 

described the following changes as results of the 

masters degree in Palliative Care: change of 

workplace; better career opportunities at their 

workplace; increased salary; offers to work as lecturer; 

teamwork and networking becomes central; use of 

more time to reflect on professional and private 

themes; a broader view („a kind of 

multiperspectivity“); organisational structures and 

routines are questioned; increased self-confidence 

(both in private and professional life); better 

reputation, a better ability to assert oneself and 

increased public authority. 

Conclusion: The graduation in Palliative Care leads 

to both private and professional changes. Changes 

include increased career options and authority, but 

possible conflicts in the workplace too. The 

participants have an increased will to 

multidisciplinary / interprofessional cooperation , 

team-working, networking and reflect more. An 

ongoing study shall investigate the experiences of a 

higher number of graduates from universities with 

master degrees in Palliative Care using a 


The results have been presented as a 

posterpresentation in German on the 8th congress of 

the German Association for Palliative Medicine (DGP) 

2010. 



Dying, Death and the Newly Qualified Doctor 

Kane P. 1 

1 Beaumont Hospital, Palliative Care, Dublin, Ireland 

Background: Dying and death form an integral part 

of the hospital experience, yet newly qualified doctors 

are frequently poorly prepared to deal with this 

particular patient cohort. 

Objectives: To ascertain from the prospective of a 

newly qualified doctor, almost one year post 

qualification from an Irish medical school; if they felt 

that undergraduate training had prepared them for 

managing a dying patient, what training they had 

received since qualification to manage death and 

dying, their own individual experience of managing a 

dying patient and their perception of whether their 

competence had ameliorated since qualification after 

working in a hospital setting. 

Method: Thirty doctors, all eleven months post 

qualification, working in a tertiary referral centre, 

were asked to complete a questionnaire, comprising 

twenty-four questions exploring the doctor’s selfperceived 

competence and experiences regarding 

death and dying. 

Results: Eighteen questionnaires were returned. All 

respondents felt ill-prepared on qualification to 

manage dying patients, describing it as ‘awful’, ‘scary’ 

with only half of the respondents, a year later, feeling 

competent. Ten had had to diagnose dying 

themselves with many finding their first experience a 

traumatic event. The Palliative Care Team and senior 

medical colleagues offered support, with all 

respondents requesting more undergraduate training. 

Conclusion: Newly qualified doctors feel wholly 

unprepared to manage death and dying, due to a lack 

of training at both undergraduate and postgraduate 

level. Both patient and doctor suffer from this lack of 

training, reinforcing for the newly qualified doctor 

that death is seen as a medical failure, as opposed to 

recognising it as part of the normal process. It is 

imperative that adequate training be instigated both 

for undergraduates and newly qualified doctors to 

better equip them to manage this vulnerable patient 

group. 



Development and Configuration of the 

Training Offer in Palliative Care in Portugal 

Carvalho M.I. 1 

1 Universidade Lusofona de Lisboa, Ciências Sociais e 

Humanas, Lisboa, Portugal 

The concept of palliative care has been changing over 

the years along with the increase in chronic and 

terminal illnesses and scientific developments. In 

1990 the WHO emphasized the extent of this type of 

curative care and in 2002 they redefined the concept 

envisaging it as an approach that improves the quality 

of life of patients and families facing problems 

associated with diseases that are life threatening, by 

preventing, relieving any kind of suffer and by early 

identification, assessment and rigorous treatment of 

pain and other symptoms, integrating psychosocial 

and spiritual support. Being a special area with regard 

to medical procedures, nursing care and other specific 

training is required. 

This communication aims to analyze the 

development and configuration of the training offer 

in palliative care in Portugal. We opted for a 

qualitative and quantitative methodology. We 

privileged the literature search, website consultation 

and phone contacts with entities that offer training in 

this area as well as interviews with key informants. We 

built a database with the following variables: year of 

the beginning of training, organization, training 

theme, target audience, type of training, 

characteristics of training, the sector develops, 

duration and location. 

The training offer includes brief preparation in the 

workplace and especially in palliative care units. In 

recent years the training was part of the university 

context with post-graduate and master´s degrees. The 

training is integrated into public and private higher 

education but with some specificity. 

We conclude that this is a very important and 

growing area due to the paradigm shift of 

health/illness and societal transformations. The 

technology and scientific advances in health and 

investment in public policies (social and health) have 

allowed the training in this area to be ever more 

intense and specialized and improve the quality of 




Therapeutic Pact: Does the Education in 

Palliative Care Improve the Knowledge about 

Strategies to Improve That? 

Capelas M.L. 1 , Guedes A.F. 1 , Paiva C. 1 , Pingarilho M.J. 1 , 

Roque E. 1 , Flores R. 1 



Aim: 

• To analyse if the education in palliative care 

improves the knowledge about the strategies to 

promote the therapeutic pact 

• To identify factors that may influence the 

knowledge about the strategies to promote the 

therapeutic pact. 

Methods: 

• We developed one list with 8 strategies and we asked 

the subjects to choose which the strategies they 

thought should be necessaries 

• We created 2 groups of subjects: one with 27 


(group 1) to study the evolution the answers during 

the course and other group with 26 students of 

others Masters Courses (group 2) to compare the 

answers 

• In the group 1 we asked in the begin (T1) of the 

course, at the final of the classes about Principles and 

Philosophy of Palliative Care (T2) and at the end of 

the course (T3) 

• We analyse if the gender, the profession and the 

work in palliative care affected the answers. 

Results: 

• In the three times of the group 1, and in the group 2, 

only one strategy (“not be compliant”) wasn’t 

chosen for the majority of the subjects 

• The group 1 increased the number of strategies 

chose during the course with differences between T1 

and T2. (p< 0.05) 

• The group 1 chose more strategies (6.6±1.3) than the 

group 2 (5.5±1.7) 

• Jointing the two groups we only found differences 

between physicians (7.5±1) and the nurses 

(5.7±1,5)[p< 0.05]. 



Conclusions: 

• The specialized education in palliative care seems to 

improve the knowledge about the strategies to 

promote the therapeutic pact 

• In this study the physicians knew more strategies to 

promote the therapeutic pact. 



Golden Opportunity: Educating the End of 

Life Workforce across a Whole Hospital 

Groves K.E. 1 , Deeming E. 1 , Walker S. 2 





Background: Within the local acute trust where the 

Liverpool Care Pathway for the Dying had been part 

of the culture for 9 years, a programme of end of life 

education already included Advanced 

Communication Skills for all ward managers as well as 

all Cancer MDT members, the 6 day palliative care 

education programme for all band 6 and above ward 

nurses, a 2 day HCA course, and various other 

teaching. The hospital had a Rapid End of Life 

Transfer pilot project, an accompanied transfer home 

provided by hospice at home, developing recording of 

preferred place of care and Advance Care Planning 

was already being introduced. 

However the hospital has been the missing link in the 

Gold Standards Framework. Because the acute 

environment has had no understanding of the 

Framework rolled out in Primary Care 10 years ago, 

then the vocabulary of GSF is unfamiliar to hospital 

staff. Consequently patients recognised to be on the 

GSF register in primary care are unrecognised when 

they cross the hospital doorway. 

Aims: To introduce the concept of GSF to hospital 

staff, to continue the GSF pathway into and out of the 

hospital, to reduce inappropriate hospitalisation and 

empower patients who understand their GSF status. 

Methods: The entire hospital trust (as part of the 

GSFAH working group) embraced the GSF Pilot and 

was the only whole hospital to do so. The End of Life 

workforce is huge and consists of almost every clinical 

and a fair number of non clinical staff. The methods 

used for educating staff in large numbers to ensure 

that all had an overview of the GSF programme and 

the aims of the pilot project are described. 

Results: In all 551 staff from 45 wards and 

departments attended education regarding GSF. 

Conclusions: The term GSF has become part of the 

hospital vocabulary and is familiar to all staff and 

information about it is being freely transferred in 

handover. Ward clerks have become integral to the 

process of registration and administration. 



Palliative Care in Undergraduate Teaching in 

Germany: Development since 2006 and 

Current Status Report 

Hildebrandt J. 1 , Ilse B. 2 , Borasio G.D. 3 , Dietz I. 4,5 , Elsner 

F. 6 , Kopf A. 7 , Laske A. 1,8 , Nauck F. 9 , Posselt J. 10 , Wedding 

U. 11 , Alt-Epping B. 9 

1 Universität Greifswald, Greifswald, Germany, 

2 Universität Jena, Jena, Germany, 3 University of 

Lausanne, Centre Hospitalier Universitare Vaudois, 

Lausanne, Switzerland, 4 Interdisziplinäres Zentrum 

für Palliativmedizin der Universität München, 

München, Germany, 5 Zentrum für Anästhesie, 

Notfallmedizin und Schmerztherapie, HELIOS 

Klinikum Wuppertal, Universität Witten/Herdecke, 

Wuppertal, Germany, 6 Klinik für Palliativmedizin, 

Universitätsklinikum Aachen, RWTH Aachen, 

Aachen, Germany, 7 Klinik für Anaesthesiologie und 

Operative Intensivmedizin, Campus Benjamin 

Franklin, Charité - Universitätsmedizin Berlin, Berlin, 

Germany, 8 SANA Krankenhaus Rügen, Bergen auf 

Rügen, Germany, 9 Abteilung Palliativmedizin, 

Zentrum für Anaesthesiologie-, Rettungs- und 

Intensivmedizin, Universitätsmedizin Göttingen, 

Göttingen, Germany, 10 Universität Göttingen, 

Göttingen, Germany, 11 Abteilung Palliativmedizin, 

Klinik für Innere Medizin II, Universitätsklinikum 

Jena, Jena, Germany 

Introduction: In August 2009, a law was passed by 

the German Parliament introducing Palliative Care as 

a mandatory core curriculum subject for all German 

medical schools. The law has to be implemented by 

the year 2012. Our survey reports current 

181 


(Friday)


(Friday) 


developments in palliative care teaching in Germany, 

in view of the special challenge to implement it as a 

new mandatory subject. 

Methods: Since 2006 the Working Group on 

Palliative Care of the German Medical Students’ 

Association has performed biannual surveys at all 36 

German Medical Schools to collect data on current 

palliative care teaching and its planned development. 

After revision of the online questionnaire in 

cooperation with relevant medical associations, data 

were collected from June to September 2010. The 

questionnaire comprised the following categories: 

structural issues, current status and planned 

implementation of mandatory palliative care 

teaching. 

Results: The return rate was 86%(n=31, up from 

n=25 in 2006). In 2010, 24 faculties had a palliative 

care unit (2006:9). The number of faculties not 

teaching palliative care at all decreased from 8 in 2006 

to 2 in 2010. So far, 21 faculties (58%) have started the 

implementation as mandatory subject. In 7 of these, 

the planned curricula are based on the undergraduate 

teaching curricula of the German Society for Palliative 

Care and the EAPC.14 faculties intend to implement 

21-40 hours of palliative care teachings. In 18 

faculties, student representatives were included in the 

implementation. Currently, 6 professorships for adult 

Palliative Care and 2 for Pediatric Palliative Care exist 

in Germany. 

Conclusion: Our data show a notable development 

of undergraduate Palliative Care teachings in 

Germany from few and poorly standardized teachings 

in 2006 to the nationwide implementation as a 

mandatory subject in the near future. In order to 

optimize the implementation process, an open 

discussion on the subject with involvement of the 

medical students needs to be continued. 



Implementation of Palliative Care 

Educational Courses in the Curriculum of 

Medical School - The First Georgian 

Experience 

Rukhadze T. 1,2,3 , Alibegashvili T. 1 , Kezeli T. 3 , Velijanashvili 

M. 1 , Abesadze I. 1 , Kordzaia D. 1,3 


Tbilisi, Georgia, 2 Palliative Care Service at National 

Cancer Centre of Georgia, Tbilisi, Georgia, 3 Faculty of 

Medicine of Iv. Javakhishvili Tbilisi State University, 

Tbilisi, Georgia 

Development of Palliative Care (PC) as a system was 

started in Georgia about ten years ago. Currently 

several significant successful steps have been taken: 

Amended legislation, supporting and promoting to 

PC development has been approved; Georgianlanguage 

educational-methodological material in PC 

are prepared and issued; PC pilot programs were 

implemented with financial support of 

Governmental Budget;The Georgian National 

Association for Palliative Care and the Office of 

Coordinator of PC National Program were 

established; 

The aim is to identify the current intereast, status 

and role of palliative care educational courses in 

medical curicula, outline the challenges and the ways 

of its further development. Introduction of PC as a 

mandatory course in educational curricula of Medical 

Universities and medical high schools is considered as 

one of the important issues on the way of PC 

development in Georgia. About 120 medical students 

at Tbilisi State University (TSU) and over 50-at Tbilisi 

State Medical University are taking PC educational 

courses annually since 2006. 

Methods: The interviewing of 112 TSU students who 

passed the examination in PC was conducted in 2009. 

The level of their interests and motivation were 

evaluated by specially designed questionnaires. The 

respective database was created and analyzed. 

Results: The results demonstrated that the interest 

towards PC is caused by complexity of this subject, 

which is reflected in medical, social, physiological and 

spiritual approaches (66.4%). Their concern was 

confirmed by the request to implement an optional 

five-day course in Pain Management for Advanced 

Cancer Patients additionally (48%). 

Conclusion: Implementation of PC educational 

course in the curriculum of medical students can be 

considered successful.Data shows that development 

of PC teaching in medical schools will support to 

increase the awareness of society and will have a huge 

impact for advocacy and quality of life for advanced 

patients. 



Education: Adapting to a Brave New World 

Needham P.R. 1 , de Renzie Brett H. 1 , Heals D. 1 , Alsop A. 1 

1 Dorothy House Hospice Care, Bath, United Kingdom 

Aim: To reflect on the significant factors which have 

influenced the development of our education 

provision. 

Introduction: Education is recognised as a key 

component of specialist palliative care and the 

education department within our organisation has 

grown considerably over recent years. 

Last year we ran over one hundred educational events 

involving practitioners from a number of different 

health and social care agencies. 

Key findings: In response to 

the implementation of the national end of life care 

strategy; 

changes in funding sources and 

an increasing number of organisations requesting a 

variety of educational initiatives 

Our education programme has moved away from 

focussed study days held at the hospice with a core 

audience of nurses and general practitioners to more 

individually tailored events for professionals working 

within other organisations eg Out of hours medical 

and ambulance services; nursing homes, health and 

social care agencies. These are now provided in a 

number of different venues. 

The impact of this will be explored in relation to: 

preparatory work (especially in understanding the 

bigger organisational picture); 

delivery; and 

loss of autonomy 

Good communication and negotiation skills are 

required to ensure that the educational goal and 

outcomes are clear. The ability to be creative and 

flexible is also essential in order to rise to the 

challenge of meeting the needs of different 

organisations, as well as those of the individual 

participant. 

As we look to the future, with the availability of elearning 

and the as yet unknown impact of financial 

cuts, there is a need to retain a clear vision of what we 

have to offer as specialists and an appreciation of the 

driving forces, challenges and opportunities which 

will shape this. 



Evaluation of a 90-minutes Teaching Module 

for Fourth-year Medical Students on a 

Palliative Care Ward with Student-patient- 

Encounter: Results of a Qualitative Study 

Schildmann J. 1 , Braun J. 2 , Weber M. 3 

1 Ruhr University Bochum, NRW-junior Research 

Group “Medical Ethics at the End of Life: Norm and 

Empiricism”, Institute for Medical Ethics and History 

of Medicine, Bochum, Germany, 2 Department of 

Internal Medicine, District Hospital, Ruesselsheim, 

Ruesselsheim, Germany, 3 University Medical Center 

of the Johannes Gutenberg-University of Mainz, 

Interdisciplinary Palliative Care Unit, Mainz, 

Germany 

Background: Palliative medicine has been recently 

introduced as obligatory part of the teaching for 

undergraduate medical students in Germany. So far 

there is little experience with students’ expectations 

and attitudes on palliative medicine and their 

evaluation of teaching sessions which are 

implemented as obligatory courses for all students. 

Method: Evaluation was conducted by means of a 

questionnaire developped by the authors. Open ended 

questions covered students’ expectations toward the 

course prior to the teaching session, identification of 

positive and negative aspects of the course and 

perceived changes of attitudes following the teaching 

session. Free text answers were analysed by the authors 

using central principles of qualitative content analysis. 

Results: During the winter term 2007/2008, 194 

fourth-year students divided into 28 groups took part 

in the bedside-teaching. 163 students completed the 

questionnaire. 115 students were female (70,6%), 44 

male (27%). Prior to the course “insight into palliative 

medicine” with respect to aims, content and practice, 

“knowledge” and “experience and increase of confidence” 

regarding the patient-physician encounter in palliative 

medicine were identified as important expectations 

on side of the students. Following the course the 

“student-patient encounter”, the “teaching atmosphere” 

of small group teaching and “insight into palliative 

care” were identified as positive aspects. “Lack of time” 

was predominantly mentioned as negative aspect. 

Asked about perceived changes due to participation in 

the teaching session “improved understanding of 

palliative medicine”, “sensitivity towards issues of dying 

patients” and ”stimuli for reflection” on end-of-life 

issues were mentioned most frequently. 

Conclusion: The short term teaching session has 

been well received by the studens. Especially the high 

proportion of practical experience including a 

student-patient encounter meets the expectation of 

undergraduate students. 



Loss and Death in Educational Context: 

Constructing an Area of Debate with Teachers 

Kiman R.J. 1 , Fernández D. 1 , Grance G. 1 , De Simone G.G. 1 , 

DÚrbano E. 1 

1 Pallium Latinoamérica Asociación Civil (NGO), 

Education, Buenos Aires, Argentina 

Schools role as a “building culture organization” 

should involve many life events, including lifelimiting 

disease and death (LLD&D): students facing 

illness or loss present different reactions, and teachers 

should address situations when those events occur in 

a child´s life or his/her familiar world. 

Objectives: 

1) To promote learning on LLD&D at the educational 

community (teachers, parents, children); 

2) To reflect about life circle including death; 

3) To promote teachers´ competences to deal with 

LLD&D, students reactions and impact on school 

performance. 

Material and methods: During 2009, we held a 

Focus Group to define an operational plan for training 

educators in order to: select professionals to work in 

the field (pediatrician, psychologist and nurse), 

identify key schools to carry out a pilot test, design 

formats (workshop, lectures, problem-based learning). 

After this pilot phase, a definitive programme is being 

built and discussed with the Ministry of Education in 

Buenos Aires. 

Results: The pilot project was developed in 2 out of 7 

institutions, reasons for rejection: refusal to address 

the issue with children, other priorities, fear of 

parents´ opinion. One experience was performed at a 

Special School where children suffered from 

disability-chronic diseases: 70 participants attended, 

teachers declared that they didn´t have training on 

these issues, they used to act instinctively and 

reported stress in daily work. Answers were not 

influenced by age or years of experience but by 

workplace: hospital school, home or school 

headquarters. Other experience took place in a 

Teacher Training Institute, involving 60 students. 

They referred uncertainty, anxiety, opposition but 

also great interest. Age (range 18 to 25y) probably 

influenced their positions, as most of them had none 

personal experience in relation to death and dying. 

Conclusions: We find it is mandatory to achieve 

better understanding on educational practices in 

relation to death and dying. 



Project Transfer of Polish Experience in Pain 

Treatment and Home Care into Armenia 

Mardofel A. 1 , Cialkowska-Rysz A. 2 

1 Lodz Hospice Association, Łódń, Poland, 2 Medical 

University of Lodz, Palliative Medicine Unit, 

Oncology Department, Lodz, Poland 

Introduction: In Armenia there is no state 

legislation or proper medical standards for palliative 


There are 5 medical centres providing stationary 

palliative care, however, home care is not provided. 

Among painkillers representing the third group of 

analgetics morphine in ampoules is available 

(unfortunately not for home patients). Moreover, 

there is no specialist in the field of palliative care. 

Medical staff have no access to training courses in the 

field of pain treatment. 

Objective: Identification and assessment of the 

present condition of palliative care in Armenia, 

identification of barriers, assessment of options of 

home care development in Armenia. 

Material and methods: 

1. Establishing cooperation with palliative care 

organization in Armenia (Pain Control and Palliative 

Care Association); 

2. Acquiring a source of financing - a grant of the 


Polish-American Freedom Foundation for: 

Organization of 5 -day internships in home care and 

pain treatment in palliative medicine centre in March 

2010 in Lodz, Poland 

Organization of 3-day training courses for 50 persons 

in June 2010 in Yerevan 

Joint work with the Armenian partner on assessing 

the condition and identifying problems related to 

tumour pain treatment and home care development. 

Results: 3 people form Armenia participated in 5days 

internship organized in Lodz, Poland. 

6 Polish specialists visited Armenia, and 50 altogether 

participated in 2 training courses and consultations 

organized in Armenia. 

Conclusions: The way to improve the condition of 

pain treatment and to develope home care in Armenia 

is to: 

Introduce legal act governing palliative care 

functioning 

Provide financing sources 

Introduce amendments to legal regulations 

concerning painkillers application 

Organize training courses for staff working at hospices 

and staff employed in other specialization fields 

Develop a network of outpatient clinics specializing in 

tumour pain treatment. 



Introducing Complementary Therapies as a 

Nursing Skill 

Martínez Cruz M.B. 1 , Garcia-Baquero Merino M.T. 2 , 

Centenera E. 1 , Carretero Lanchas Y. 1 , Dominguez Cruz 

A. 1 , Ruiz López D. 1 



Paliativos, Consejeria de Sanidad. Comunidad de 

Madrid, Madrid, Spain 

Aim: Certain complementary therapies are already 

recognized as integral part of palliative care. 

Empowering palliative care nurses by introducing 

them to different therapies and training them in 

applying them can be very beneficial to patients. 

We considered important to evaluate the nurses’ 

perception of the potential positive clinical impact of 

these therapies on patients as well as the nurses’ 

satisfaction when using them. 

Methodology: We contacted team leaders and 

coordinators working in support teams and inpatient 

units. Two meetings with the organizing business unit 

and the trainers helped establish the need for this 

intervention and, from there, selected the best 

complementary therapies for the initial phase and 

elaborated the content of the training courses. All of 

them incorporated a specific chapter addressing the 

therapy application to the Palliative Care 

particularities. 

A training session was organized per selected therapy 

for ten attendees each. 

The therapies chosen were: Reiki (8 hours), Bach 

Flowers (16 hours) and Reflexology (32 hours). A 

chronogram was designed to delineate and time all 

necessary actions and a questionnaire was given to 

the thirty nurses on the session to evaluate training 

quality, the therapies’ effectiveness and to aid develop 

further projects. 

Results: As a result of this program which was the 

first of its class in our area, the 30 nurses trained 

appreciated the initiative and felt they gained new 

skills and knowledge. They perceived that their 

potential ability to provide these therapies would 

contribute positively to improving patient care. 

Conclusions: Palliative care nurses from our area 

welcomed the opportunity to receive training in 

complementary therapies and rated the training 

received very positively. They expressed their desire to 

be able to provide these therapies to their patients and 

also to generate and engage in projects to further 

explore the application of these therapies. 



The Perception of a Young Palliative Care 

Team about the Needs of Education 

Flor de Lima M.T. 1 , Ferreira C. 2 , Amaro N. 2 , Botelho O. 2 , 

Jordão A.T. 2 , Borges P. 2 , Pires C. 2 , Moura M. 2 

1 Hospital Divino Espírito Santo, Palliative Care Team, 

Ponta Delgada, Portugal, 2 Hospital Divino Espírito 

Santo, Ponta Delgada, Portugal 

Aims: To know how the experience influences the 

perception of needs for education of a young 

Palliative Care Team. 

Methods: We joined all the members of the team (3 

Doctors - Internal Medicine, Pain Medicine, 

Rehabilitation, 2 Nurses, 1 Psychologist, 1 Social 

Worker, 1 Spiritual Assistant) and asked about the: 

Specialty, years of practice in the specialty, specific 

courses in the field of palliative matters, number of 

hours of the courses, months of practice courses in 

palliative care. The last question was which needs of 

education they felt. 

Result: The years of experience are correlated with 

the hours of education; the younger doctor is less 

prepared in the field of palliative care (PC). All the 

team members considered important the theoretical 

courses but the need of practical stages in palliative 

care is a crucial concern (only a doctor has practice 

education). The comparison with the proposal of the 

Portuguese Association of Palliative Care (APCP) and 

the European Association of Palliative Care (EAPC) 

lead to a discussion which result was the recognition 

of the need of a better program of education, in terms 

of internal education with the discussion of the topics 

of palliative care, the elaboration of protocols and the 

attending of practical stages, in periods of two weeks, 

in other hospitals. 

Conclusion: After the discussion of the needs of 

education/formation, the coordinator is aimed to 

present to the superior hierarchic a detailed education 

and formation program, in terms of internal teaching 

and practical education of all the members of the 

team in other hospitals with palliative care teams and 

palliative care units. Another conclusion was that the 

Team can really be considered a Palliative Care Team 

because three members are pos-graduated in PC and 

three in related disciplines. 



Introduction of the Educational Programs on 

Palliative Care in the Republic of Armenia 

Krmoyan S. 1 , Roza B. 2 , Nanushyan L. 3 , Papikyan A. 4 

1 Ministry of Health of Republic of Armenia, Yerevan, 

Armenia, 2 Ministry of Health of Republic of Armenia, 

Legal Department, Yerevan, Armenia, 3 Standing 

Committee on Health Issues of the National Assembly 

of RA, Yerevan, Armenia, 4 Open Society Foundation 

Armenia, Yerevan, Armenia 

Research aims: According to official statistics, in 

Armenia the number of people suffering from cancer 

and other life-threatening incurable diseases is 

increasing every year. Nowadays the country lack of 

palliative specialists and the medical educational 

programs do not contain even palliative care 

introductory course for the neither bachelor´s nor 

master´s preparation period. The same situation is for 

postgraduate education. This situation led to the 

necessity of implementation of training and 

education of the palliative specialists. 

Study design and methods: To achieve the 

objective of the research, it has been reviewed and 

analyzed the current legislation and the medical 

educational programs, international experience in 

this field, particularly European standatds as well as 

reforms in introduction of the educational programs 

of the palliative care in many countries. 

Results: In Armenia, there is a need of recognition of 

the palliative care as a specific specialization or prespecialization.The 

next action should be the inclusion 

of the latter in tree-level higher education system, 

with the following approaches: 1) The package of the 

pallaitive care basic notions and approaches, which 

must be included in first level’s academic curricula, 2) 

second level is a postgraduate specialization, which is 

preparing palliative care specialists, 3) and the last, 

third level implies the improvement of already 

available palliative care specialists or trainings for 

related specialists. A special attention should be paid 

to the specialization of nurses. 

Conclusion: In parallel with the adoption of the 

palliative care concept, it is necessary to form 

educational programs in line with the Bologna 

principles for doctors, nurses, and considering that 

the palliative care is a multidisciplinary approach, it is 

necessary to collaborate with other educational 

institutions that prepare psychologists, social workers, 

and to carry out a campaign collaborating with cleric 

representatives. 





Are Students of Anatomy Adequately 

Prepared to Encounter Human Donor 

Remains? 

Ward S.A. 1 

1 Trinity College Dublin, Anatomy Department, 


Purpose: The purpose of this study was to discover 

how first year students of anatomy perceived their 

preparation for and experience of working with 

human donor remains in the Anatomy Department, 

Trinity College, Dublin. 

Research methodology: A sequential exploratory 

mixed methods approach was selected to help solve 

the research question. A draft questionnaire was 

designed which was revised following a student focus 

group meeting. The revised questionnaire was 

presented to 241 first year anatomy students who had 

no prior experience of working with human donor 

remains. The results from the student focus group and 

the questionnaire were analyzed and presented to a 

staff focus group for discussion. 

Results: 34% of the survey population had no prior 

knowledge they would be working with donor 

remains. Notably these students who were least well 

informed about what to expect in the anatomy room 

were those undertaking para-medical courses. 

The information students received at the introductory 

talk prepared them (76%) in some way for the first 

encounter but six months later 19% of students still 

felt unprepared for working with the donor remains. 

The challenge in designing an orientation program is 

to ensure that all students have adequate preparation. 

Conclusions: Clear and transparent information 

describing anatomy needs to be included in the 

College prospectus and on the Anatomy Department 

web site. Students required better preparation for both 

the emotional and practical aspects of dealing with 

donor remains while staff recognised the need to 

provide an open environment for discussion of 

emotional aspects of the “anatomy experience”. 

An new orientation programme was implemented 

this year (October 2010) for all first year students of 

anatomy. Topics included: Information on the donor 

programme, the first encounter with the donor body, 

reactions to seeing and handling the donor remains, 

and ways to deal with this new experience. 



Distance Only Separates the Bodies - Four Years 

of Experiences from an Online Distance 

Learning Program 

Tunedal U. 1 , Hansson A. 1 , Rydell-Karlsson M. 1 , Lundh 

Hagelin C. 1,2 

1 Sophiahemmet University College, Stockholm, 

Sweden, 2 Karolinska Institutet, Stockholm, Sweden 

Background: Distance learning is defined as 

“education based teaching in which teachers and 

students, most of the times are spatially separated”, 

while online distance learning is defined as “distance 

learning in which all or most of the training is 

conducted through the Internet”. Studies have shown 

that cooperation is beneficial from a learning 

perspective, and although Internet separates, it also 

offers ample opportunities for students and teachers 

to work and learn together. In Sweden as in many 

parts of the world, we have an increased ageing 

population placing special educational demands on 

health care professionals. For different reasons nurses 

may have difficulties to attend university courses for 

education within this field. 

Aim: A Specialist Nursing Program in Elderly Care has 

been created as a joint effort by five universities in 

Sweden. In this collaborative, each university has the 

main responsibility for one of the courses building the 

program, whereas palliative care is one. The used 

virtual environment is specifically designed for these 

educational institutions. 

Results: Experiences from four years of the virtual 

education program show that students can study 

independently of time, and despite off geographic 

locations students and teachers can collaborate. This 

allows studies to be parallel with professional work 

and nurses to pursue higher education. After 

completing the program the students become a part 

of an alumni network, which allows for further 

contact and experience exchange through the 

Internet. 

Conclusion: Online distance learning may be one 

way to meet professionals and society´s needs of 

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education in the future. This education program, 

characterized by both independence and 

collaborative elements, will be described and further 

discussed, as well as nurses’ experiences of a palliative 

care education within the field of elderly care. 



To Promote the Dignity of the Terminal Ill: 

Does the Education in Palliative Care Improve 

the Knowledge about Strategies for That? 

Capelas M.L. 1 , Flores R. 1 , Paiva C. 1 , Pingarilho M.J. 1 , 

Roque E. 1 , Guedes A.F. 1 



Aim: To analyse the impact of the education in 

palliative care in the knowledge about the strategies to 

promote the dignity of the terminal ill. 

Methods: 

• We developed one 15-item Likert-scale (cronbach 

alpha=0.898) 

• We asked 26 students at the end of Master Course in 

Palliative Care (group 1) and we asked 25 students of 

others Master Courses (group 2) to compare the 

answers. 

• We analysed if the education in palliative care, the 

gender, the age, the profession or the work in 

palliative care affected the answers. 

Results: 

• In the different groups the majority of the students 

gave the right answers 

• The number of right answers of the Group 1 (14 ±3) 

was higher than the Group 2 (12.6 ±2.9) [p< 0.05] 

• In both groups there weren’t no any factors, that 

influenced the answers. 

Conclusions: 


improve the knowledge about the strategies to 

promote the dignity of the terminal ill 

• These results seem to justify the need of palliative 

care education for every health professionals to 

promote the dignity of the terminal ill. 



Nursing Science - The Weakest Link in the 

Development of Palliative Care in Germany? 

Ewers M. 1 

1 Charité - Universitaetsmedizin Berlin, Institute of 

Health Sciences Education & Nursing Science, Berlin, 

Germany 

In Germany, like in many other developed countries, 

the need for evidence-based palliative care is 

increasingly recognized and structures for improved 

end-of-life care are developed strongly. Consequently, 

in the meantime, palliative care has become a crucial 

field for academic performance and research for 

almost all of the relevant health and social disciplines. 

However, if it is about academic discourse and 

research on palliative care in Germany there is one 

discipline mostly conspicuous by its absence: nursing. 

Aim of this presentation is to describe the current 

situation in one of the last European countries where 

nurses are still regularly educated only in form of a 

diploma vocational training and where the discipline is 

still in an early and still not competitive stage of 

academic development. Even in modern and advanced 

universities and teaching hospitals with professorships, 

institutes or research groups for palliative care nurses 

with a strong scientific educational background today 

are not regularly part of the team and included in the 

upcoming research activities. This is why questions and 

phenomena relevant to nursing today are not 

recognized and studied in a manner necessary for the 

successful participation in national and international 

scientific activities on palliative care. 

Based on literature analyses and critical evaluation of 

the situation it will be asked from a nursing and 

health sciences point of view for the consequences of 

these shortcomings for the further development of 

palliative care in Germany. In the conclusion it will be 

argued that nursing science might be the weakest link 

in the development of palliative care in this country 

and that without strengthening the discipline and its 

academic progression the current process of fostering 

evidence-based palliative care in Germany will be in 

danger of failing. 



Palliative Home Care Nursing: Guided Group 

Reflection 

Kemple M.E. 1 

1 University College Dublin, Nursing, Midwifery and 

Health Systems, Dublin, Ireland 

Aim: To develop, implement and evaluate guided 

group reflection within the Palliative Home Care 

Nursing Team. 

Guided group reflection offers palliative home care 

nurses the space, skills and knowledge needed to 

reflect on and confront their practice within a critical 

group in a safe environment. The ability to critically 

reflect on one’s palliative home care experience, 

integrate knowledge from that experience with 

knowledge already possessed in an effort to 

understand and to plan for similar future situations is 

considered one of the hallmarks of the adult learner. 

This poster describes the processes involved in an 

eighteen month project in introducing, facilitating 

and evaluating guided group reflection in a very busy 

palliative home care service. The issues that arose from 

the implementation and evaluation of guided 

reflection during this period focus on the structures 

and collaborative processes arrived at by the group of 

qualified palliative care nurses. The overall evaluation 

pointed to the use of the critical group in illuminating 

assumptions and practices within palliative home care 

and acknowledged the unpredictability of the journey 

which provided a rich source of shared learning. 



Implementing an Educational Program for 

Palliative Care in the Region of Catalonia 

Lasmarías C. 1 , Caja C. 2 , Gómez X. 1 , Espinosa J. 1 , Bullich 

I. 2 , Beas E. 1 , Martínez-Muñoz M. 1 , Gonzalez M.P. 1 , Ela S. 1 , 

Alburquerque E. 3 

1 Institut Català dÓncologia, Observatory End of Life, 

Hospitalet del Llobregat, Spain, 2 Ministry of Health of 

Catalonia, Socio-Health Director Plan, Barcelona, 

Spain, 3 Institut Català dÓncologia, Training and 

Educational Unit, Hospitalet del Llobregat, Spain 

Introduction: The education in the End of the Life 

Care (EOL) in primary care services, Socio-Health and 

hospitality care it’s one of the fundamental 

improvement areas to achieve a welfare ideal quality 

for the comfort patients with advanced and terminal 

disease (ATD) and relatives. 

The Socio-Health Director Plan stimulated the 

implementation of an Education Program (EP) 

addressed to health professionals(HP) who work with 

patients in ATD, complex symptoms and multiple 

needs, high demand and emotional impact, in nononcological 

and oncological disease. 

Aims: 

1. To improve the attitudes, knowledge and skills in 

the HP of primary care and the palliative care teams 

2. To implement an homogeneous and integral model 

of education 

Methods: 

To reach all the HP of every team a pyramidal system 

transmission of the information was established, from 

the people in charge of the different Regions of 

Catalonia and executives of the diverse sanitary 

service providers. The program was adapted to specific 

regional characteristics. 

The Observatory (OEOL) built the scientific contents 

of the EP. We reached a consensus with the 

professional experts of scientific societies involved in 

the care at the EOL. We empowered HP to disseminate 

the contents to the primary care and Palliative 

Care(PC) teams. 

We have made 3 different activities in a 3 training 

levels: 

Workshop of Awareness, Basic Course and 

Intermediate Course addressed to HP who attend 

patients with ATD. We also developed a guide to ATD 

patient’s relatives. 

Results: We mobilized all PC specific resources, 

encouraged all the involved sanitary service suppliers 

and prioritized the high need areas in PC education. 

Nowadays we have achieved around 30% coverage of 

the HP who attend patients with ATD. 

Conclusion: The welfare quality improvement 

required a planned and homogeneous education that 

provides a common language in the intervention of 

patients with ATD; it promotes the welfare quality 

improvement. 



How Are Volunteers Prepared for Work in 

Palliative/Hospice Care in Poland? 

Pawlowski L. 1 , Lichodziejewska-Niemierko M. 1 , 

Janiszewska J. 1 

1 Medical University of Gdansk, Department of 

Palliative Medicine, Gdansk, Poland 

Background: Volunteers in palliative/hospice care 

in Poland perform various activities under terms and 

conditions as described in the Act of Law of April 24 th 

2003 on Public Benefit and Volunteer Work. 

Depending on provided services (their type and 

scope), volunteers should be adequately qualified. In 

specific conditions, when volunteers work as 

professionals (eg. physicians, nurses), they have to 

fulfill relevant conditions according to legal 

provisions. Moreover, involvement of volunteers in 

direct patient care (eg. feeding, washing and cooking 

for patients) also demands additional requirements. 

Aim: The aim of the study was to review 

qualifications and education of volunteers in 

palliative/hospice care. 

Methods: Statistical analysis of the responses from a 

set of questionnaires directed for volunteers working 

in palliative/hospice care units in Poland. 

Results: 63% of volunteers perform tasks, which do 

not require specific qualifications. In contrast, 37% 

out of unpaid staff are professionals who work as 

volunteers. Prior to undertaking their duties, some 

respondents participated in theoretical training and 

some of them took part in practical training, 72% and 

42%, respectively. The most common education 

programs for volunteers in palliative/hospice care 

units include basic information about palliative care 

(79%), volunteers’ rights and duties (68%) or health 

and safety rules in hospice (64%). 

Conclusions: Voluntary service in palliative/hospice 

care in Poland consist of either volunteers, who do not 

possess specific qualifications or professionals working 

as volunteers. Most of them are prepared to their 

services during education and training. Particularly, 

hospices provide courses for candidates for volunteers 

and also for volunteers currently working in these 

units. On the other hand, professional volunteers 

donate to palliative/hospice care institutions their 

specialist knowledge and skills, which were gained 

through academic or vocational education. 



Aiming Higher: Results from the First 

International PhD in Palliative Care 

Programme 

Brearley S.G. 1 , Payne S. 1 



Aim: To report the process of developing and 

recruiting to the first international PhD in Palliative 

Care programme. 

Background: Education is a key priority for the 

EAPC; workshops and meetings in recent Congresses 

highlighted the need for increasing higher education 

and supported the development of a taught doctorate 

in palliative care. 

Method: The International Observatory on End of 

Life Care developed a PhD programme which would 

attract national and international people from across 

the discipline, including those working within 

clinical services, policy management, research, and 

education. An innovative programme was developed, 

commencing with an intensive residential week, 

followed by distance e-learning modules on health 

research methods, ethics and research governance, 

and palliative care provision and policy. The 

innovative online delivery allows teaching, 

discussion, seminars, peer review, research 

development and supervision to be undertaken in the 

student´s home environment. 

Results: The programme was launched in June 2010. 

Analysis of the 1st cohort (n=16) showed 10 UK 

students, 5 from North America and 1 from the Czech 

Republic. Their backgrounds were: medicine (n=2), 

nursing (n=5), pharmacy, social work, physiotherapy, 

public health, psychology, fundraising, the voluntary 

sector, chaplaincy, and research (one each). 5 students 

worked within university/hospice education. The age 

range was 25-59 and most were women (n=13). 

Overall the programme received 103 enquiries and 

made 18 offers of places. 2 were unable to attend due 

to lack of funding. 

Conclusions: The number of enquiries and 


egistered students demonstrates the level of interest 

in a taught PhD in Palliative Care. The success in 

recruiting a multi-disciplinary cohort supports the 

aim to develop an innovative doctoral programme 

which is of relevance to a broad range of professionals. 

Despite the programme’s popularity, funding is a 

challenge, particularly for students from resource 

poor countries. 



Advancing Palliative Care through Education 

of Health Providers and Awareness Raising: 

Example of Ukraine 

Tymoshevska V.B. 1 

1 International Renaissance Foundation, Public Health 

Program, Kyiv, Ukraine 

Aim: To analyze strategies for promoting access to 

palliative care through education of health care 

providers and awareness raising. 

Results: With over 16 medical schools or universities 

and 28 nursing schools Ukraine did not have formal 

training in palliative care that was funded by the 

government up to the 2010. All prior efforts in 

training of health providers were done with the 

financial and technical support of various donors. 

Acute need to integrate palliative care in to the formal 

training of health providers was necessary in order to 

utilize capacity that was build previously and make 

current efforts more sustainable. 

Various forms of provider educations were utilized: 

standard lectures and seminars, apprenticeship, 

bedside trainings domestically and internationally 

(Hungary, Romania and USA). Series of consecutive 

educational efforts resulted in a cohort of fourteen 

trained individuals with key decision-makers at the 

Ministerial level, opinion leaders among health 

providers and professors of medical universities. Being 

exposed to formal and informal trainings led to 

mentality shift from ‘palliative care is just symptom 

management’ to ‘palliative care is essential part of 

comprehensive health care system’. Series of personal 

meetings and advocacy activities including visits of 

international technical advisors the development and 

further approval of the formal curricular was done at 

the National Medical Academy for Post-Graduate 

Education. 

Further on, some of these leaders were able to attract 

attention of local government and gain support in 

establishing local training centers and drafting plans 

with budget for developing and promoting palliative 

care in three regions of Ukraine. 

Conclusions: It is critical to continue education and 

awareness raising among health providers and 

teaching staff of medical schools to educate in 

palliative care and promote access to palliative care 

through development of National and Local Plans 

with corresponding budget. 



Equipping Ambulance Clinicians in End of 

Life Care: Devising an Evidence Based Online 

Learning Initiative 

Pettifer A. 1 , Bronnert R. 2 , Ali I. 1 , Seeley S. 3 , Cole R. 4 

1 Coventry University, Coventry, United Kingdom, 


Coventry, United Kingdom, 3 Clifton Road Surgery, 

Rugby, United Kingdom, 4 West Midlands Ambulance 

Service, West Midlands, United Kingdom 

Aims: People approaching the end of their lives often 

live in the community with deteriorating health and 

may call the ambulance service in response to a crisis. 

Few studies investigate the experience or practice of 

ambulance personnel responding to such calls. 

Education and training in this area is limited and 

anecdotal reports suggest there may be scope to 

improve care delivered by ambulance clinicians. We 

aimed to develop an evidence-based education tool 

relevant to ambulance clinicians caring for patients at 

end of life which will enhance the end of life care they 

deliver. 

Method: A collaborative project group comprising 

higher education providers, a hospice and an 

ambulance service undertook an educational needs 

analysis. This incorporated a literature review, 

operational policy, expert opinion, self reported 

educational needs and questionnaire and interview 

studies exploring end of life care experiences/practices 

of ambulance clinicians. Desired learning outcomes 

were formulated and on-line learning selected as the 

most appropriate delivery model. 

Results: An evidence based on-line learning tool was 

developed with 4 fictitious, interactive cases. Cases 

explore management options and impact of actions 

on patients and family including 

1) Transferring patients at the end of their lives to 

hospital/hospice 

2) Sources of specialist advice/support for ambulance 

staff 

3) Advance decisions to refuse treatment 

4) Communication 

5) Do Not Attempt Resuscitate orders. 

Sources of further reading are given. A certificate can 

be downloaded after successful completion of the 

programme including multiple-choice questions. The 

tool has been delivered across one UK ambulance 

trust. Preliminary evaluation is positive. 

Conclusions: This easily administered learning tool 

delivers end of life care education to ambulance 

clinicians and equips them with knowledge to 

enhance practice and positively influence care 

delivered to patients at end of life. 

Funder: NHS West Midlands 



Palliative Care Knowledge and Skills of Junior 

Doctors: Building the Evidence 

Tyler A.J. 1 , Poolman M. 1 , Speyer F. 1 , Makin M.K. 1 

1 Betsi Cadwalader University Health Board, 

Wrexham, United Kingdom 

Background: In our team, we have first year doctors 

rotating through specialist palliative medicine. Based 

on locally identified need and the risk of potential 

longer term psychological impact, we introduced a 

support programme. Concurrently, we looked at 

wider evidence for such a programme, by reviewing 

the literature and surveying senior palliative medicine 

medical views. 

Aims: 

(1) To perform a literature review of junior doctor 

experiences of caring for patients with palliative care 

needs 

(2) To gain the views of senior palliative medicine 

doctors on the timing and delivery of palliative care 

training in our region. 

Methods: We performed a literature overview, and 

the results informed questionnaire design (web-based 

survey using an Online Survey tool). We asked senior 

doctors for their views on the general palliative care 

knowledge and skills of junior doctors, and on junior 

doctors working as part of a specialist palliative care 

team. 

Results and discussion: There is a paucity of recent 

papers on this subject, but all underscore the 

importance of palliative medicine training, and 

support the local programme. 

24 (77.4%) of the 31 senior doctors responded to the 

survey. Nine (37.5%) indicated they had junior 

doctors (in the first two years of clinical practice) in 

their teams. 

A significant percentage (60.9%) (n=14) felt that 

doctors during the first 2 years after completing 

undergraduate medical training did not have 

sufficient general palliative care knowledge and skills 

as would be expected at that level. 

When asked to consider if they agree with the view 

‘that if a junior doctor is doing a specialist palliative 

care rotation very early in their career, it may lead to 

psychological morbidity’.4 (16.7%) agreed with the 

view, whilst 16 (66.7%) did not 

We discuss the impact of the findings on our local 

programme as well as on wider palliative care 

education delivery. We propose next steps. 

This project was done as part of Dr Tyler’s academic 

rotation. 



International Research Education: Delivering 

an Advanced Introduction to Palliative Care 

Research 

Fineberg I.C. 1 , International Observatory on End of Life 

Care 


End of Life Care, School of Health and Medicine, 


Aims: Our international research education 

programme provides an advanced introduction to 

palliative care research methods. An identified 

conceptual map is used to guide the design and 



structure of the education. The primary aim of the 

programme is to create an intensive experience that 

offers a solid base of knowledge for palliative care 

research. Additional aims focus on offering an 

interdisciplinary and international context for the 

learning experience. 

Methods: The programme is taught by a team of 

instructors with expertise in numerous research 

methods. Various teaching formats are used 

throughout the programme, but an interactive 

emphasis is consistent throughout. Students are 

encouraged to discuss their own experiences and 

work-based examples in order to maximise the 

exchange of information from multiple disciplines 

and countries. Programme evaluation is conducted 

using an anonymous questionnaires gathering 

quantitative and qualitative data. 

Results: This education programme has successfully 

continued for several years, repeatedly drawing a 

multidisciplinary and international group of students. 

Programme evaluation data reveal attendee 

representation from 21 countries and 12 occupational 

groups. Program sessions are consistently rated highly 

and qualitative data offer strongly positive and 

thoughtful evaluations of the experience. 

Conclusion: Professionals and students with 

backgrounds from health care, community 

organisations, and policy programmes find this 

programme valuable. Utilisation of the conceptual 

map for organisation of the programme offers a 

cohesive educational entity. The variety and 

combination of teaching methods, programme 

content and participants creates a successful model 

for teaching palliative care research methods. 



Teacher Training: An Audit of Palliative 

Medicine Physicians’ Experience of Training 

in Teaching 

Stickland A.E. 1 , Baldry C.R. 1 , Groves K.E. 1 


Services, Palliative Care, Southport, United Kingdom 

Background: The General Medical Council expects 

trainers to contribute to the learning culture in which 

teaching occurs. Trainers should understand their role 

and the structure and purpose of the specialty training 

programme. They should receive support from a 

postgraduate medical education team. 

Aims: To audit training in teaching received by 

palliative physicians involved in teaching locally. 

Methods: Physicians from six local teaching hospices 

were invited to complete an online survey consisting 

of 17 questions enquiring about training in teaching 

and their experiences. 

Results: 30 doctors completed the online survey. The 

majority (n=27, 90%) were hospice based. All of the 

respondents were involved in teaching. Their 

teaching was targeted at consultants (n=8, 26.7%), 

hospital trainees (n=18, 60%), GPs (n=18, 60%), 

nursing staff (n=24, 80%), medical students (n=30, 

100%) and others (n=12, 40%). 15 respondents taught 

for an average of 1-2 hours per week using a variety of 

teaching methods. 19/30 (63.3%) had received formal 

training or gained educational qualifications. 15 of 

these had attended a ‘Training the Teachers’ course 

and two had completed a postgraduate certificate in 

teaching. 13/30 had received informal training at 

their place of work. 14/30 worked in environments 

using educational peer review, with eight having had 

peer review during the previous two years. 15/30 

physicians commented on their experience of 

teaching within palliative care. All of the comments 

were positive. 

Conclusions: From this audit it appears that 

teaching is enjoyed by palliative physicians and 

recognised as part of the clinical role. One third of 

those teaching have had no formal training to do so. 

Educational peer review in palliative care teaching (a 

recognised method of maintaining standards, gaining 

peer advice and support) has been undertaken by less 

than half of those teaching and less than one third 

have undertaken this in the previous two years. 

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Suffering in the Terminal Ill: Does the 

Education in Palliative Care Improve the 

Identification of the Signs? 

Capelas M.L. 1 , Flores R. 1 , Paiva C. 1 , Guedes A.F. 1 , 

Pingarilho M.J. 1 , Roque E. 1 



Aim: 

• To analyse if the education in palliative care 

improves the knowledge about the signs of suffering 

of the terminal ill 

• To identify others factors that may influence the 

knowledge about the signs of suffering of the 

terminal ill. 

Methods: 

• We created 2 groups of subjects: one with 27 


(group 1) and other group with 26 students of others 

Masters Courses (group 2) 

• We developed one list with 13 signs and we asked 

the subjects to choose which signs may indicate 

suffering of the terminal ill 

• We analysed if the education in palliative care, the 

gender, the profession and the work in palliative 

care affected the answers. 

Results: 

• The group 1 indicated more signs (11.5 ±2.3) than 

the group 2 (7.6 ±3.1) [p< 0.05] 

• We only found differences between physicians and 

nurses; the firsts indicated more signs (12.8±0.4) 

than the seconds (8.9±3.4)[p< 0.05]. 

Conclusions: 


improve the knowledge about the signs of suffering 

of the terminal ill 

• In this study the physicians indicated more signs of 

suffering than the nurses 

• No other factor was found that influenced the 

knowledge. 



Map of Care for the Process of Palliative Care 

Pérez Espina R. 1 , Ceada Camero J. 1 , Cercos Huguet A.I. 1 

1 Hospital Vázquez Díaz, AH Juan Ramón Jiménez, 

Unidad Hospitalaria de Cuidados Paliativos, Huelva, 


Introduction: The Map of palliative care for 

patients is part of an ambitious project promoted by 

the continuing education department of our hospital, 

which is intended to respond to the difficulties 

between the nurses when implementing 

individualized care plans. 

The objective was to upgrade and training skills in the 

practical application of the care map. 

Design and method: The care map is the record 

where we specify in detail the daily care that the 

patient requires to achieve the desired results in a 

period of time, allowing to individualize the care to 

the needs of each user. 

The map consists of a focused assessment according to 

Virginia Henderson, independent nursing diagnosis 

with NOC results (Nursing Outcomes Interventions) 

and NIC Interventions (Nursing Interventions 

Classification), interdependent problems with NIC 

activities, and diagnostics of autonomy, and also a 

section dedicated to graphics, catheters, diagnostic 

tests, observations and recording of prescribed 

medication. 

We used e-learning methodology using a virtual 

learning platform credited with 40 hours, including 

the implementation of the map of care in a real 

patient with the help of the assigned tutor support. 

Results: Formed 100% of the nurses at the Hospital 

Palliative Care Unit. The students resolved to 100% of 

the cases studied. Participants were passed tests for the 

evaluation of the activity, where 87.5% had achieved 

the objectives set, and had achieved a degree of 

satisfaction of 88.3% with activity. 

Conclusions and discussion: Direct training with 

tutors facilitated the development of knowledge, skills 

and attitudes in the practical implementation of the 

Map of Patient Palliative Care.The paper record 

required us to prioritize aspects of the care plan with 

the loss of information. This limitation could easily 

save the computerization of the map that we believe 

will be the next step to work. 



Program for Training in PC - Program for 

Training in Palliative Care (PC) 

Łuczak J. 1 , Kluziak M. 1 , Gorzelinska L. 1 , Kotličska A. 1 , 

Sopata M. 1 

1 Medical University of Poznan, Palliative Care 

Department, Poznan, Poland 

Aim: The aim of this study was to determine the role 

of OSI (New York) funded PC Resource &Training 

Center in providing education in PC care for trainees 

predominantly from Eastern and Central Europe. 

Method: Oral and written reports of trainees 

evaluating the training value were analysed. 

Results: In the period of 2001-2010 the ‘packages’ of 

2 weeks free of charge, hands -on training in 

interdisciplinary palliative care at ESMO designated 

Hospice ‘Palium’ in Poznan and Palliative Medicine 

Chair and Dept of Poznan University of Medical 

Sciences in cooperation with Wielkopolska 

Association of PC volunteers, Home Care Hospice for 

Adults and Children in Poznan, Hospice in Gdansk, 

Palliative Home Care team in Wroclaw, St Lazarus 

Hospice in Krakow and Hospice in Wagrowiec -were 

offered to English speaking 75 trainees ( doctors, 

nurses, psychologists ) from 20 Eastern and Central 

Europe, and also Central Asia and India . The training 

was provided in variable of PC units: pain clinic, 24hours 

per day and 7 days a week accessible home care 

for adults and children, in-patient ward, hostel for 

children/adolescents, day care centre, lymphoedema 

clinic, wound clinic and bereavement service, using 

not only physicians as teachers, but also qualified in 

PC nurses, psychologists, social workers, 

physiotherapist and volunteers. The recruitment for 

training was performed by the use of questionnaire 

available on the web of ECEPT(Eastern and Central 

Europe Palliative Care Taskforce). 

Conclusion: Participants positively evaluated 

knowledge and skill gained in to improve symptom 

control, communication, holistic care, end of life 

decision and team work despite the cross country 

cultural diversity and one of the most bothersome 

limitation difficult to force barrier - problems with 

oral morphine availability and lack of palliative care 

policy and educational programs in palliative care in 

their countries. 



Palliative Care Competency Programme One: 

Collaboratively Sustaining and Developing 

Care 

Russell S.J. 1 , Gontier J. 2 

1 Hospice of St Francis, Education and Research, 

Berkhamsted, United Kingdom, 2 Peace Hospice, 

Watford, United Kingdom 

Aim: To provide dedicated palliative care education 

to those not working or new to palliative care. The 

programme had not been delivered in this area before. 

All palliative care providers in the area collaboratively 

worked together to deliver the new programme. The 

programme was oversubscribed before it was 

advertised, not suprising to us as we knew from 

neighbouring education programmes that there was a 

demand. 

Design: 12 nurses enrolled on the programme (4 

hospices, 2 hospitals, 2 nursing home, 2 community 

nurses - 1 participant withdrew due to promotion). A 

palliative care mentor was allocated to all participants. 

The programme was 8 study days facilitated by 2 

palliative care educators, mentorship meetings, 

complementary learning opportunities, & accessing 

other teaching opportunities. Attendees completed a 

pre confidence questionnaire, individual learning 

objectives and end course 1000 word personal 

reflection. The programme covered symptom control, 

principles of care, assessment tools, palliative care 

emergencies, communication skills and advance care 

planning. 

Results: Rated 79% excellent for learning objectives 

and 84% excellent for relevance to role. End day 

evaluation provided deeper insight with themes of: 

Change in approach to palliative care. Greater 

symptom control knowledge. Relevance to role. 

Change in practice. Desire for career development (2 

participants were promoted during the 

programme).Relevance of the mentor role. All 

participants would recommend the course to their 

peers. 

Conclusion: The programme enabled participants to 

sustain and develop their palliative care confidence 

and expertise through focused learning objectives, 

systematic formal education programme, and 

mentorship support and peer networking with each 

other. It also enabled a greater understanding 

between each other of the patients/ journey through 

care. Course Two has already begun. 



An Evaluation of Palliative Care Education in 

the Specialist Training Programme in Family 

Medicine, Malta 

Abela J. 1,2 , Mallia P. 3 

1 Malta Hospice Movement, Balzan, Malta, 

2 Department of Primary Health, Floriana, Malta, 

3 Bioethics Research Programme, Department of 

Family Medicine, University of Malta, Msida, Malta 

Introduction: The Specialist Training Programme 

in Family Medicine (STPFM) was launched in Malta in 

2007. The present study aimed to evaluate the 

teaching provided in palliative care during the 

STPFM. This is the first time that education in 

palliative care is being studied locally. 

Method: A questionnaire was used and distributed to 

all GP trainees. The questionnaire consisted of four 

sections analyzing 15 topics commonly encountered 


Results: 22 (74.4%) trainees completed the 

questionnaire. All came across patients receiving 

palliative care but only 6 (27.3%) had used a syringe 

driver and only 5 (22.7%) felt involved in their care. 

In all 15 topics listed, there was a predominance of 

formal teaching during the STPFM. In general, the 

non-medical subjects scored lower scores than the 

traditional medical areas as regards confidence and 

coverage during the STPFM. A significant correlation 

between confidence and coverage (p< 0.05) was 

identified in the following topics: using a syringe 

driver, managing constipation, breaking bad news, 

teamwork, certification at end of life and ethical issues 

at end of life. A significant minority of trainees 

(40.9%) raised concerns on dealing with dying 

patients in the community. 63.3% of trainees 

responded correctly to a question on pain 

management whilst only 23.7% of trainees answered 

correctly to another question on using a syringe 

driver. The Half Day Release Programmes in palliative 

care were rated as extremely useful by 81.8% of 

trainees. 50% of trainees rated the attachment at the 

Oncology and Palliative Hospital of average 

usefulness. 90.1% of trainees rated their overall 

STPFM as good or very good. 

Conclusion: GP trainees need to be trained in 

palliative care in a manner which adequately 

addresses their future case load. Changes need to be 

made in the STPFM to address areas such as ethical 

issues in end-of-life; using a syringe driver; self-care 

and managing patients in the community. 



The “Last Aid” Course of the Austrian Red 

Cross - A New Concept of Teaching Palliative 

Care to the Public 

Bollig G. 1,2 , Wegleitner K. 2 , Völkel M. 2 , Gröschel C. 3 , Wild 

M. 3 , Gruber W. 3 , Appel E. 3 , Heller A. 2 



2 University of Klagenfurt/Graz/IFF Wien, Department 

of Palliative Care and Organisational Ethics, Wien, 

Austria, 3 Austrian Red Cross, Salzburg, Austria 

Aims: Palliative Care is a holistic approach aiming for 

best possible quality of life for patients with chronic 

life threatening diseases and their relatives. There is a 

great demand of Palliative Care all over the world 

including people of all ages. The demand is likely to 

increase because of the expected demographic 

changes. As means to introduce Palliative Care to the 

public a public knowledge approach including last aid 

courses and a chain of Palliative Care have been 

suggested (1,2). 

Methods: A working group was established in Austria 

to create a curriculum for a Last Aid course for the 

Austrian Red Cross. The working group consisted of 

educators from the Austrian Red Cross and 

experts/researchers from the field of Palliative Care. 

Based on the experts suggestions a consensus was 

reached about the contents of a Last Aid course. 

Results: The result is a curriculum for a Last Aid 

course for the public. The course shall be open to the 

public and is divided into 4 modules with 4 hours 


(total 16 teaching hours, each lasting 50 minutes). 

Participants can also choose to attend just one 

module although they shall be encouraged to visit the 

whole course. The main themes of the modules are: 

1. Care at the end of life, 

2. Advance Care planning and decision making, 

3. Symptom management, 

4. Cultural aspects of death and dying. 

Conclusions: In order to teach Palliative Care for the 

public a curriculum was designed. Instructor courses 

and evaluation of the concept will start in 2011. 

Literature: 

1. The „Chain of Palliative care“ and the „public 

knowledge approach“ - new concepts for 

introduction of Palliative Care to the public. Poster 

presentation congress of the European Association for 

Palliative Care Mai 2009 in Wien. Abstract 

2. Bollig G. Palliative Care für alte und demente 

Menschen lernen und lehren. LIT-Verlag, Zürich 

2010. 



The Challenge of Euthanasia. Theoretical and 

Practical Implementations for the Education 

in Terminal Care 

Godolt N. 1 , Jantzen A. 1 , Meyer G. 1 , Radbruch L. 2 , Lüke U. 1 

1 RWTH Aachen University, Institute for Catholic 

Theology, Aachen, Germany, 2 University of Bonn and 

Malteser Hospital Bonn, Department of Palliative 


Our research units consists of researchers in ethics, 

religious education and palliative care. Our research 

project takes part in the development of the 

curriculum for health personnel. In view of a scientific 

gap in cultural anthropology we combine a 

philosophical and a practical approach: We author a 

textbook for learners and a manual for teachers with 

lesson plans which consist of separate modules and 

enable a problem-based ethical learning in four steps. 

While talking about end-of-life care, some basic 

concepts of anthropology are obvious. We realize 

seven of these basic ideas in the textbook: Pain/Angst, 

Time/Sense, Dignity, Identity, Autonomy, Hope, 

Social relations. A coherent essay is followed by an 

ethical discussion with the main focus on the question 

of suicide or medicide. These discussions give an 

overview of the history of philosophical debates. 

Each chapter of the manual for teachers is divided in 

four parts to structure the learning process. At first an 

introduction is given to assure the possibility of 

perceiving the topic in a holistic way. Secondly, the 

interpretation of the philosophical discussion takes 

place. Thirdly, the learners are given the possibility to 

verify the adaptability of the philosophical concepts 

in prepared case studies. Finally, the learners are 

enabled to apply the outcome of the philosophical 

debate to the end-of-life care. 

For evaluation, we cooperate with several nursing’s 

training schools. The project is financed by German 

Cancer Aid. 



Maintaining the Momentum - Continuing 

Education for Established Gold Standards 

Framework Practices 

Hough J. 1 , Jones T. 1 , Groves K.E. 1 




Background: A recent cancer network audit (July 

2010) reviewed the use of the End of Life Tools in 

primary care. During the audit most of the Primary 

Care practices commented that they had little 

education in their Gold Standards Framework(GSF) 

meetings with regard to the end of life tools. However 

they were aware that there had been advances locally 

in End of Life Care with implementation of the Gold 

Standards Framework in the acute hospital and some 

care homes, and a Hospice at Home service had also 

been commenced. 

Aim: To look at the continuing education needs of 

established GSF General Practitioner (GP) practices. 

Methods: All Primary Care practices in the area were 

audited and their comments about continued 

education noted. 

Results: All the practices were offered an update on 

Palliative Care Services locally. 

Out of the 42 practices in the area, 41 practices 

responded and completed the audit over the 

telephone. 16 practices expressed an initial interest in 

having teaching and 12 practices had confirmed 

sessions. 

If practices wanted education, they were asked to 

identify their learning needs. The teaching required 

throughout the area was then discussed within the 

palliative care services, so that the teaching could be 

focused on the particular needs of individual 

practices, facilitated by a palliative care doctor and 

nurse specialist team. 

Out of the 12 practices who had teaching sessions, 7 

practices requested teaching for the whole practice 

team, 2 practices for the administrative staff and 3 

practices solely for the GP’s. 

All 12 practices wanted updates on Advance Care 

Planning, version 12 of the Liverpool Care Pathway, 

the Gold Standards Framework and the new Hospice 

at Home service. 

Conclusion: There is an ongoing need for education 

for GPs and other primary care staff and there are 

benefits to opportunistic teaching. 



Current State of Palliative Care Education in 

Armenia 

Movsisyan N. 1,2 

1 Yerevan State Medical University, Chair of 

Anesthesiology and Intensive Care, Yerevan, 

Armenia, 2 ’Muratsan’ University Hospital, Anesthesia 

Department, Yerevan, Armenia 

Background: Armenia is at the beginning of 

accepting and applying implementing palliative care 

into medical service, though there is no adequate 

background for it. Including palliative care into the 

health care system will help Armenia to comply with 

European Union standards. 

Palliative care starts long before the terminal phase, 

when highly specialized care becomes more 

important. In order to provide palliative assistance at 

earlier stages of illness, all physicians need to 

understand the basic principles of palliative care. The 

body of knowledge relates to the control of pain, and 

other symptoms accompanying life limiting illnesses. 

There are no residency curricula, no courses or 

training centers in the country for professionals to be 

trained or get certified in palliative care, at the same 

time there is a huge interest in developing the above, 

moreover some individuals also get relevant trainings 

outside of Armenia. There are different ways to certify 

medical professionals, depending on the quality of 

training; medical professionals might get a specialist 

level or subspecialist level of certification. Basic and 

intermediate level training for general practitioners 

and other specialists should be available. We suggest 

palliative care as a subspecialty, and in the future to 

develop academic undergraduate and postgraduate 

curricula, and continuing education courses in 

accordance with the EAPC (European Association for 

Palliative Care) Standards of palliative care education. 

These standards define three levels of training for 

physicians: I - basic level for general physicians, II - 

intermediate level for relevant specialists, and III - 

specialized level for palliative care specialists. 

Conclusion: Well trained and highly qualified 

physicians will allow us to integrate into the world 

community of palliative care specialists, and to have a 

significant effect on overall patient care in our 

country. 



Stand and Deliver: Meeting the Need for 

Palliative Care Education by General 

Practitioners 

Coackley A. 1,2 , Powell P. 1,3 , Littlewood C. 4 , Thompson A. 1 , 

Fountain A. 3 , Whittaker T. 1 , Tseung H. 5 , Edwards D. 1 , 

Rathbone K. 1 , Walker H. 1 , Mc Kenna E. 6 

1 Willowbrook Hospice, Palliative Medicine, Prescot, 

United Kingdom, 2 Clatterbridge Centre for Oncology, 

Palliative Medicine, Wirral, United Kingdom, 3 Halton 

and St Helens Primary Care Trust, Palliative Medicine, 

St Helens, United Kingdom, 4 St Helens and Knowsley 

Teaching Hospital NHS Trust, Palliative Medicine, 

Prescot, United Kingdom, 5 Halton and St Helens 

Primary Care Trust, General Practice, Halton, United 

Kingdom, 6 Willowbrook Hospice, Prescot, United 


Introduction: With the shift of care of patients with 

advanced illness into the community, general 

practitioners will provide the majority of care and are 



likely to see increasingly complex problems. Local 

GPs identified the need for education in palliative care 

but. providing that education in a format that is 

acceptable with good attendance can be a 

challenge.Tthe aim of the education was to offer an 

up to date, relevant and enjoyable course for doctors 

which improved knowl;edge, developed skills and 

influenced practice. 

Method of delivery: A survey was conducted 

amongst local doctors asking for opinions on the need 

for palliative care education and optimum methods of 

delivery.The resulting education course was delivered 

by doctors one evening a month for 6 months.Each 

session focused on a different aspect of symptom 

control with a seminar followed by small group 

workshops for case discussion 

Results: 42 doctors registered for the course.75% 

atttended all 6 sessions.There was evaluation of each 

session and the whole course. Results for relevance 

and appropriateness were excellent. Each session 

influenced practice for the majority of delegates and 

fully met the expectations of the participants. 

Conclusion: There remains a demand for education 

in symptom control amongst generalists working in 

the community. Traditional ways of delivering 

education can be extremely successful in terms of 

acceptability and impact. Consultation with local 

practitioners is key in delivering a successful 

education initiative. 



The Experiences of New Consultants in 


Nangati Z. 1 , Davies A.N. 2 , Arber A.A. 3 

1 St Catherine’s Hospice, Palliative Medicine, Crawley, 

United Kingdom, 2 The Royal Marsden NHS 

Foundation Trust, Palliative Medicine, Sutton, United 

Kingdom, 3 University of Surrey, Faculty of Health and 

Medical Sciences, Guildford, United Kingdom 

Background: The transition from being a specialist 

registrar (specialist trainee) to a consultant (practising 

physician) is seen as a huge leap when compared to 

that of other stages throughout one’s medical career. 

Experiences of consultants within Palliative Medicine 

are of particular interest due to the unique aspects of 

the speciality. Doctors more routinely come in 

contact with death and suffering, which is in contrast 

to the rest of the medical specialities where death can 

be seen as a failure. Aim: To find out about the 

experiences of new consultants in Palliative Medicine, 

in particular the main challenges faced when 

becoming a consultant, the support mechanisms 

accessed. To identify the best and worst aspects of the 

role and the extent to which specialist registrar 

training prepared them for the challenges and 

demands of being a consultant. 

Design and Methods: A qualitative study was 

carried out. Ten consultants who were in post for one 

to five years were interviewed. They were primarily 

based in the South East region of the United Kingdom 

(UK). The purposive sample, with characteristics 

representative of consultants in the UK, included 

females and males, full-time and part-time 

practitioners, and those working in hospices, 

hospitals and the community. 

Analysis: The transcripts from the interviews were 

subjected to thematic analysis with open-coding. 

Theoretical explanations of the findings are provided 

and hypotheses that could guide further studies. 

Results: The results provide information useful in 

ascertaining the extent to which current training 

prepares individuals for the transition to being a new 

consultant. 

Conclusion: This study provides evidence that 

determines whether current training is sufficient to 

support the transition from specialist registrar to 

consultant, useful information for trainees about to 

make the transition and forms the basis for further 

studies. 



How Many Articles in Rehabiliation 

Interventions with Palliative Care Team by 

the Internet Basis 

Abe P.K. 1 

1 Chiba Prefectural University of Health Sciences, 

Rehabilitation, Chiba, Japan 

Purpose: Rehabilitation approach has been useful 

and helpful for the cancer patients especially in 

187 


(Friday)


(Friday) 


advaenced stgage. But at this time, rehabilitation 

interventions in hospice/ Palliative care unit was now 

under development, especially in palliative care team. 

So we searched out some articles about this theme by 

internet. Because internt research is one of the most 

practical way to first step study at this field. 

Method and subjective: We searched Medline on 

last summer. We use three keywords such as cancer, 

palliative care and rehabilitation. Then we select 

articles written by English originally, taken concrete 

rehabilitaion interventions and collaborated with 


Results: Firstly we hit six-hundred and sixty two 

articles by all key words, but finally, according to our 

rules above by first selecting articles, then we select 

eight articles there finally. 

Conclusion: There were a few articles about 

rehabilitation interventions in palliative care team. 

We should make an effort to write article at the field 

for edacation. Whom deducation ? For students in 

rehabilitaion or rehabilitation of course, but for other 

team members, doctors, nurses, social workers, 

clinical ssychologist and so on. Then we could get 

more introducing and more developmento of 

rehabilitation interventions for better care of the 

advanced or far advanced cancer patients especially 

by, in and through palliative care team. 



‘I Don’t Feel Quite Right’ - An Audit of the 

Impact of Education about Neutropenic Sepsis 

Groves K.E. 1 , Bunn M. 1 




Background: Neutropenic sepsis is an oncological 

emergency, often presenting with minimal 

symptomatology, requiring prompt recognition and 

treatment. 

Aim: To see if an educational intervention has 

sufficient impact to ensure staff consider neutropenic 

sepsis and act promptly. 

Method: An educational DVD (Sussex Cancer 

Network, U.K.) presents a case scenario where 

minimal symptoms present shortly before a fatal 

outcome. 181 staff from all health care settings (53 

hospital & 57 district nurses, 47 medical students & 24 

family doctors) watched it & were surprised by the 

speed of deterioration. A free text questionnaire about 

the impact, knowledge and understanding was 

completed by 115 before and 181 after the DVD. 

Results: Only 5(4%) of the 115 who completed pre- 

DVD questionnaires claimed to have had any formal 

training in recognition or management of neutropenic 

sepsis (2 nurses & 3 doctors). Although prior to the 

DVD 58(50%) recognised the need for IV antibiotics, 

only 2(2%) stated that this should be undertaken 

urgently (both medical students). 42 (37%) stated that 

clinical signs might include raised temperature, 

51(44%) decreased neutrophil or white cell count. 

After the DVD 162(90%) of 181 who completed a post- 

DVD questionnaire mentioned the need for IV 

antibiotics within an hour of presentation. 24(13%) 

mentioned recent history of chemotherapy, 149(82%) 

reduced neutrophil or white cell count, 76(42%) rise or 

fall in temperature, 46(25%) hypotension, as 

symptoms or signs of neutropenic sepsis. 157(87%) felt 

the DVD had been a effective training tool. 

Conclusions: It is clear that we cannot assume that 

qualified clinical staff have a full understanding of the 

presentation, urgency or management of neutropenic 

sepsis. It would appear that, certainly immediately 

following the educational intervention, there is raised 

awareness of the important symptoms and signs and 

the urgency and type of management required. 



Creation of an International Training and 

Research Program in HIV-associated 

Malignancies 

Abernethy A.P. 1 , Muriuri C. 2 , Bus A. 1 , Ntabaye M. 3 , Oneko 

O. 3 , Bartlett J. 2 

1 Duke University Medical Center, Medical Oncology, 

Durham, NC, United States, 2 Duke University Medical 

Center, Durham, NC, United States, 3 Kilimanjaro 

Christian Medical Centre, Moshi, Tanzania, United 

Republic of 

Background/aims: Kilimanjaro Christian Medical 

Centre (KCMC) is located in Moshi, Tanzania, an area 

heavily impacted by HIV infection and complications 

including diverse cancers. Successful collaborations 

between KCMC and Duke University School of 

Medicine (Duke), in conjunction with existing 

research networks, have resulted in a new grant from 

the United States National Institutes of Health to 

support development of research and clinical capacity 

in HIV-associated malignancies in Africa. 

Design/methods: The new KCMC-Duke training 

and research program will build substantially on 

initial investments in HIV/AIDS and its infectious 

complications, prioritizing expansion of research in 

oncology and especially HIV-associated malignancies. 

Palliative care is integral to the care/research paradigm 

in HIV malignancies. As a first step in program 

development, program leaders explored current 

shortcomings in the KCMC research environment. 

The program was then designed to address identified 

needs through a portfolio of long-, medium-, and 

short-term trainings with a mix of formal degree and 

non-degree practicums. Workforce development for 

collaborative oncology research will target medical 

oncology, pathology, radiology, and essential 

research support personnel (e.g., oncology nurses, 

pharmacists, laboratory technologists, data 

managers); 35 Tanzanian investigators and research 

staff will be trained over a 3-year period. 

Opportunities to engage in network-sponsored and 

investigator-initiated research into HIV-associated 

malignancies will complement didactic training. 

Additionally, the grant will strengthen the KCMC 

tumor registry and referral networks for clinical 

studies. This program will partner with palliative care 

training and education efforts across Africa, to 

enhance access to and research in palliative care for 

HIV malignancies. 

Conclusion: International collaboration is building 

palliative care-relevant research capacity in Tanzania, 

focused on HIV-related cancer. 



Trainig Programmes of Hungarian Hospice 

Foundation 

Jakus N. 1 , Muszbek K. 1 , Biró E. 1 

1 Hungarian Hospice Foundation, Budapest, Hungary 

The Hungarian Hospice Foundation is the first, and 

biggest hospice institute in Hungary. Our aims are not 

only the palliative work, but the transmission of 

palliative knowledge for other professionals, and the 

familiarization of hospice philosophy. 

In this presentation I would like to show the diverse 

work, that we are doing in education. I would like to 

present the accomplishments, difficulties, and the 

challenges all of which will be introduced in our 

training activities. 

As a resource and training center the foundation 

offers courses for those professionals, and lays, who 

are interested in hospice, and wish to improve their 

knowledge, or set up a new hospice. Subjects of 

courses for professionals includes basic principles of 

palliative care, the students attend scheduled 

theoretical lectures, and take part in workshops on 

ethics, symptom management, communication, 

psychosocial issues, roles of volunteering, setting up a 

hospice system, improving public awareness. 

Beside the professional trainings, the foundation 

takes part of expanding the knowledge of the public 

in hospice philosophy by adapting the Fields of Hope 

Programme of Marie Curie Cancer Center in 2007. 

With the help of their teacher, we try to plant the 

thought of solidarity in the children, who are openminded 

for every good thing. 

We are ready to give our knowledge to proffesionals, 

but the challenge remains that the basic education in 

medical universities does not include hospicepalliative 

care, and sometimes the colleagues do not 

have the interest in this field either. We have 

deficiency in publications, therefore we shall design 

training books, and training videos in the future. 

One of our main aims is to inform the public about 

accessibility of hospice. We are trying to achieve this 

aim by continuing the Fields of Hope programme in 

which we are involving as many children and families 

as possible, as the future development of hospice 

movement and palliative care is in their hands. 



Setting Basic Education for Palliative Care 

and Complementary Therapies 

Villa B. 1 , Holguin-Licón M. 1 

1 Cepamex, Mexico, Mexico 

In Mexico, Palliative Care and Complementary 

Therapies have been implemented recently. However, 

setting standards for the services is needed as well as 

personnel trained in order to deliver them in most 

correct form. It is believed that professional in 

education in the subject, given from public 

institutions, can enhance the establishment of 

quality-normalized services. The UNAM (National 

University of México), and the IPN (National 

Polytechnic Institute) in conjunction with CEPAMEX 

(Centre for Palliative Care) and ISSSTE (Institute for 

Social and Security Services for Public Servants) 

implemented the first Diploma on Palliative Care for 

first level of attention and the first diploma in 

Complementary therapies in palliative care. 

The aim was to asses the organization process, specific 

contents, students profile as well as the evaluation 

system and certification. Students were asking to 

develop a research protocol. 

As a positive academic result of the implementation 

of the courses and the interest from health public 

services, currently three new courses have been 

initiated, including a course for pediatric palliative 




Coping Early - A Self-help Programme at the 

Outset of Life-limiting Diagnosis 

di Castiglione J.A. 1 , Williams H. 2 

1 Dorothy House Hospice Care, Projects, Bradford on 

Avon, United Kingdom, 2 The Royal United Hospital 

NHS Trust, Oncology, Bath, United Kingdom 

COPING Early in the trajectory of life-limiting illness 

is difficult when there is either a scarcity of resource or 

when specialist care is reserved for the most complex 

of scenarios. Patients often ask specialist palliative 

care clinicians “Why didn’t I know this sooner?” 

Our local cancer network identified that only 42% of 

women with metastatic breast cancer (compared to 

96% of women with a primary breast cancer 

diagnosis) felt supported and were given enough 

knowledge to cope with their active and yet palliative 

care trajectory. 

Dorothy House Hospice Care in conjunction with 

both acute and primary care providers and our local 

cancer network have developed a model of enabling 

care at diagnosis (and therefore with an attached 

prognosis) of life-limiting illness, such as when the 

news is given that a disease and its processes will 

eventually end someone’s life. Whilst this model is 

not entirely unique it is important to note that it is 

not owned by specialist palliative care and the 

hospice. 

The model, useful for any disease group(s), has 

engaged 3 care providers in collaborative working to 

ensure that this group are given the opportunity to 

- Network with their peer group, as are the 

carers/families/partners of this group 

- Enabled to gain coping strategies 

- Provided with access to information (e.g. what help 

is available and when it is applicable in their 

situations) 

- Meet the care team from all sectors. 

This model, to be piloted in April 2011, is based upon 

the learnt attributes of the positively evaluated 

Dorothy House COPE Rehabilitation programme but 

with subtle differences: 

- A new model of assessment is to be introduced 

- Outcome measurement tools will be introduced as 

self-help tools but not for professional assessment 

- It is to be evaluated against occupied bed-days and 

consultations in the acute care sector as the plan is to 

introduce patients to better community based care. 

Results will be available. 




Experiences about the Liverpool Care 

Pathway outside of a Palliative Care Unit 

Annweiler B. 1 

1 Helios Kliniken Schwerin, Palliativzentrum, 

Schwerin, Germany 

In Germany the context of the Liverpool Care 

pathway is not yet well known. This Pathway is a 

direction to manage patients and their loved ones at 

the end of life. It consists of 18 points. 

Centers of birth are expanding. Midwives are 

educated and rooms around birth are beautiful styled. 

But there is less effort in dealing with the dying 

patients and their loved ones outside a palliative care 

unit. “ We are having enough midwives to help us to 

reach this world, but nobody to educate dying.” 

(Tiziano Terzani). Nurses and doctors are often 

overburdened with necessary symptomcontrol and 

communication to the very ill and their loved ones 

about death and dying. There is no time to spend with 

these patients and often no location for dying with 

dignity. 

A survey below 120 doctors and nurses demonstrated 

the big lack of education about death and dying. 68% 

answered the questions about their knowledge and 

need of education in symptomcontrol and 

communication skills. Unfortunately lessons of 

education are visited mostly by nurses not by doctors. 

On the other hand doctors are important for decision 

finding and making. There is no final decision about 

dying without a doctor. If the Palliative Care Team is 

involved the diagnosis “dying” is clearly pointed out 

and the patient and his loved ones will be cared to the 

rules of Liverpool Care Pathway. If there is no 

Palliative Care experienced doctor, a definitely 

decision is often made very late. 

Palliative consultans are very helpful. Nevertheless we 

need more education in symptomcontrol of the 

dying. 

The implementation of the Liverpool Care Pathway in 

a big Hospital outside a palliative care unit makes 

people think about handling death and dying. The 

very ill are handled with more dignity. One talks 

about death in a big hospital. Employees call for 

palliative care for their own ill loved ones. 

Science, skills and attitude of palliative care are 

possible to experience in a big hospital. 



An Evaluation of Discharges at the End of Life 

Using the Standard Continuing Healthcare 

Application Process (CHC) or a New Fast Track 

Tool 

Jenkins D. 1 , Atkinson C. 2 

1 Royal Gwent Hospital, Aneurin Bevan Health Board, 

Palliative Medicine Department, Newport, United 

Kingdom, 2 St Anne’s Hospice, Palliative Care, 

Newport, United Kingdom 

Most terminally ill patients would prefer to die at 

home, yet many die in hospitals or hospices. The End 

of Life Care Strategy from the Department of Health 

requires that patients be enabled to die at home if 

they wish and to facilitate this, timely provision of 

care by external agencies is often needed. However, 

when CHC funding is required to support end of life 

care provision application processes are onerous, 

complicated, overly bureaucratic, and poorly reactive. 

The National Framework for CHC funding is explicit 

that patients ‘at the end of life’ should be ‘fast tracked’ 

to achieve urgent care and yet no specific fast track 

tool has been evaluated for this purpose. This work 

assesses use of both the CHC standard application 

process and a new fast track tool at end of life. 

Methods: The standard CHC application was 

evaluated over 12 months for patients being 

discharged home from a hospice with a prognosis of 

less than 8 weeks. Work intensity of the process and 

outcomes for preferred place of care were assessed. 

A fast track CHC application tool was developed for 

patients with a prognosis of 7 days or less being 

discharged from a District General Hospital (DGH) 

and outcomes for preferred place of care were 

evaluated over 18 months. 

Results: The standard CHC application was initiated 

for 45 patients in the hospice and mean survival for 

these patients was 30 days from admission. The mean 

time taken for applications was 12.26 days and 51% of 

patients died before completion. 

64 patients were discharged from the DGH using the 

fast track process. The mean survival for these patients 

was 8.84 days after discharge and 3% died before 

completion. 

Conclusion: Standard CHC application processes for 

dying patients wanting to go home are timeconsuming 

and often fail to be completed before the 

patient dies. A fast track tool can facilitate swifter 

discharge and extending its use to those with a 

prognosis of weeks may enable more patients to die in 

their preferred place of care. 



What Is Good Palliative Care for Immigrants 

with a Turkish or Moroccan Background? 

Francke A.L. 1,2 , De Graaff F. 3,4 , van den Muijsenbergh 

M.E. 5,6 , Van der Geest S. 3 

1 NIVEL, Utrecht, Netherlands, 2 VU University 

Medical Center, EMGO+, Amsterdam, Netherlands, 

3 University of Amsterdam, Medical Antropology, 

Amsterdam, Netherlands, 4 Mutant, The Hague, 

Netherlands, 5 Radboud University Nijmegen Medical 

Centre, Nijmegen, Netherlands, 6 Pharos, Utrecht, 

Netherlands 

Research aims: The aim of this study was to explore 

whether main principles of palliative care, such as 

advanced care planning and the emphasis on quality 

of life, match with the perspectives of immigrants 

with a Turkish or Moroccan background. These are 

the two largest immigrants groups in the Netherlands. 

Both groups came as immigrant workers a few decades 

ago. 

Study design and methods: We conducted 83 

qualitative interviews with patients, relatives, doctors, 

nurses and other professionals, involved in a total of 

33 cases of Turkish or Moroccan immigrants receiving 

palliative cancer care. These persons were interviewed 

about their values and norms on ‘good care’. All 

interview data were analysed qualitatively, with 

support of the programme MAXQDA. 

Results: Essential components of ‘good care’ 

expressed by Turkish and Moroccan patients with 

incurable cancer and their relatives were: maximum 

treatment and curative care until death, never having 

hope taken away, devoted care by their families, 

avoiding shameful situations, dying with a clear mind 

and being buried in the country of origin. 

These views conflict, to some extent, with main 

principles in palliative care, for example, the emphasis 

on quality of life and advanced care planning. 

Conclusion: This study shows that patients and 

families with a Turkish or Moroccan background 

often have different ideas about ‘good care’ in the 

palliative phase than their Dutch care providers. As 

many of these immigrant patients are aiming at cure 

until the end of life, ‘good palliative care’ appears to 

be a contradiction in terms for them. 



Explaining Variations in End-of-Life 

Palliative Care Policies and Practices in 

Denmark, Spain, and the Netherlands 

Hoefler J. 1,2 

1 Dickinson College, Political Science, Carlisle, PA, 

United States, 2 Carlisle Regional Medical Center, 

Biomedical Ethics Committee, Carlisle, PA, United 

States 

Tremendous strides have been made in the last two 

decades with regard to the quality of palliative care 

made available to patients at the end of life. But 

progress has not been uniform, even among countries 

in the same part of the world. 

The objective of this study is to describe, in a 

comparative context, the current status of end-of-life 

palliative care in three European countries that are, 

geographically at least, relatively close to each other: 

Denmark, Spain, and the Netherlands. The author 

will then offer some explanations for the variations in 

the status of end-of-life care among the three 

countries studied. 

This study’s findings and conclusions will be based on 

a synthesis of recently published quantitative research 

on 

(1) palliative care, 

(2) general health care, and 

(3) cultural factors in each of the three countries 

studied. 

Data will be drawn from research results published by 

EAPC, WHO, the Economist Intelligence Unit, the 

European Commission, the World Values Survey 

Association, and a variety of independent medical 



and health policy researchers who have published 

work in relevant areas in the last ten years. The study 

will also include the results of semi-structured 

interviews conducted by the author with health care 

professionals who have specialized knowledge of 

palliative care policies and practices in each of the 

three countries focused on. 

Preliminary findings suggest that socio-cultural 

factors (e.g., mean levels of empathy, religiosity, 

volunteerism, and openness to ideas from other 

countries) can help explain a great deal of the 

variation that exists in end-of-life palliative care from 

country to country. Understanding these dynamics 

may help health care professionals and policy makers 

overcome barriers to providing high quality, state-ofthe-art 

medical care to patients who suffer at the end 

of life regardless of where they may live. 



Advance Care Planning - One Size Fits All? 

Rhee J. 1 , Zwar N. 1 , Kemp L. 1 

1 University of NSW, Centre for Primary Health Care 

and Equity, Sydney, Australia 

Aims: Recent studies have explored differences in 

aims that patients, families and clinicians may have 

when engaging in Advance Care Planning (ACP) and 

the impact that this has on how ACP is facilitated but 

have rarely examined their views on the process of 

ACP. Therefore this study aimed to explore how the 

process of ACP is conceptualised by expert clinicians 

(e.g. palliative care physicians, geriatricians, nurses) 

and key stakeholder organisations (e.g. health 

departments, professional societies, consumer 

organisations) and how this impacts on how ACP is 

facilitated. 

Study design and method: Semi-structured 

interviews. Sampling was purposive and theoretical 

and continued until theoretical saturation. The 

interviews were recorded and transcribed. Transcripts 

were analysed using Grounded Theory Method 

utilising NVivo8 software. 

Results: Twenty three participants were interviewed. 

There were major differences in how the process of 

ACP was conceptualised by the participants. One was 

an individualistic model of ACP where patients were 

seen as individual units making decisions regarding 

their own future. Another was a family model that 

recognised that care was provided not only to patients 

as individuals but to family as a unit. And there was a 

partnership model that emphasised the trusting 

relationship between patients and their health 

professionals. Different views existed not only across 

different participants but also within the same 

participant. Such interpersonal and intrapersonal 

differences in views were best explained in relation to 

specific situational context of the particular scenario 

that the participant was talking about, including the 

patient’s illness characteristics, family and social 

characteristics and nature of the patient-health 

professional relationship. 

Conclusion: Our study highlights the need to avoid 

a one-size-fits-all approach to ACP by individualising 

the process of ACP according to each patient and their 

family’s context and situation. 



Continuous Palliative Sedation for Cancer and 

Non-cancer Patients 

Swart S.J. 1,2 , Rietjens J.A. 3 , van Zuylen L. 3 , Zuurmond 

W.W. 4 , Perez R.S. 4 , van der Maas P.J. 3 , van Delden J.J. 5 , 

van der Heide A. 3 

1 ErasmusMC, Public Health, Rotterdam, Netherlands, 

2 Laurens Antonius IJsselmonde, Rotterdam, 

Netherlands, 3 ErasmusMC, Rotterdam, Netherlands, 

4 VU University Medical Center, Amsterdam, 

Netherlands, 5 University Medical Centre Utrecht, 

Utrecht, Netherlands 

Research aims: Palliative care practice is often 

focused on cancer patients. Palliative sedation at the 

end of life is a palliative care intervention to address 

severe suffering in the last stage of life. Little is known 

about palliative sedation for non-cancer patients. We 

therefore studied the practice of continuous palliative 

sedation for both cancer patients and non-cancer 

patients. 

Methods: In 2008 a structured questionnaire 

regarding their last patient receiving continuous 

sedation until death, was sent to a random sample of 

1580 physicians working in general practice, nursing 

189 


(Friday)


(Friday) 


homes and hospitals. 

Results: A total of 606 physicians (38%) filled out the 

questionnaire, of whom 370 (61%) reported on their 

last case of continuous sedation (cancer n=282, 76%; 

non-cancer n=88, 24%). More often, non-cancer 

patients were older, female, and not fully competent. 

Dyspnoea (OR:2.13, CI:1.22-3.72) and psychological 

exhaustion (OR 2.64, CI:1.26-5.55) were more often a 

decisive indication for continuous sedation for these 

patients. A palliative care team was consulted less 

often for non-cancer patients (OR:0.45, CI:0.21-0.96). 

Also, preceding sedation, euthanasia was discussed 

less often with them (OR:0.42, CI:0.24-0.73), whereas 

their relatives more often initiated discussion about 

euthanasia than relatives of cancer patients (OR: 3.75, 

CI:1.26-11.20). 

Conclusion: The practice of continuous palliative 

sedation in patients dying of cancer differs from 

patients dying of other diseases. These differences 

may be related to the course of advanced non-cancer 

diseases, which is often less predictable than the 

course of advanced cancer. 



Family Matters. An Empirical Study of the 

Role of Patients´ Family Members in Medical 

Decision Making at the End of Life as 

Perceived by Physicians and Nurses in the 

Netherlands 

Kouwenhoven P.S.C. 1 , van Thiel G.J.M.W. 1 , Rietjens 

J.A.C. 2 , Raijmakers N.J.H. 2,3 , van der Heide A. 2 , van 

Delden J.J.M. 1 

1 University Medical Center Utrecht, Julius Center for 

Health Sciences and Primary Care, Utrecht, 


Center Rotterdam, Department of Public Health, 

Rotterdam, Netherlands, 3 Erasmus MC, University 

Medical Center Rotterdam, Department of Medical 

Oncology, Rotterdam, Netherlands 

Aim: In end-of-life decision-making the preferences 

of patients and family as well as the views of 

professionals are extensively described. Less is known 

about the perception of the role of family by 

professionals. We studied their experiences and 

attitudes regarding the role of family in decisions 

about palliative sedation (PS) and symptom relief with 

morphine. 

Methods: Questionnaires were sent to a random 

sample of 1955 physicians in the Netherlands, of 

whom 793 responded (40.6%). 1243 nurses 

completed an online questionnaire. We used multiple 

choice questions and vignette methodology. 

Results: 13.9% of physicians felt pressured by the 

patient’s family in their last case of PS decisionmaking. 

In 76.7% of these cases PS was performed. Of 

the nurses, 12.1% reported pressure by family 

members to increase the dosage of morphine 

administered to the last patient they provided 

palliative care to. We asked their views on a case of an 

incompetent, terminally ill patient, who was not 

suffering according to her doctor, but whose family 

stated to suffer from having to deal with her situation. 

28.7% of physicians and 41.8% of nurses found it 

morally right to start PS. 35.9% of physicians and 

48.4% of nurses thought it was legally justified. If the 

family claimed that the patient would never have 

wanted the situation herself, then 32.8% of 

physicians and 44.8% of nurses found it morally right 

and respectively 37.9% and 46.2% thought it would 

be justified by law. 

Conclusion: In certain cases, professionals might 

make end-of-life decisions because of family pressure. 

A considerable amount of professionals in this study 

think this is morally and legally right, regardless of the 

reason being family interest or perceived patient 

wishes. This is remarkable since family interest should 

not play a decisive role, according to current patientcentred 

medical ethics and Dutch law. These findings 

are reason to evaluate the actual and preferred role of 

family in end-of-life decisions. 



Study of Recent and Future Trends in Place of 

Death in Belgium Using Death Certificate 

Data: A Shift from Hospitals to Care Homes 

Houttekier D. 1 , Cohen J. 1 , Surkyn J. 2 , Deliens L. 1,3 


Care Research Group, Brussels, Belgium, 2 Vrije 

Universiteit Brussel, Interface Demography, Brussels, 

Belgium, 3 VU University Medical Center, Department 

of Public and Occupational Health, EMGO Institute 

for Health and Care Research and Expertise Center for 

Palliative Care, Amsterdam, Netherlands 

Background: Since most patients prefer out-ofhospital 

death, place of death can be considered an 

indicator of end-of-life care quality. The study of 

trends in place of death is necessary to examine causes 

of shifts, to evaluate efforts to alter place of death and 

develop future policies. This study aims to examine 

past trends and future projections of place of death. 

Methods: Analysis of death certificates (deaths ≥ 1 

year) in Belgium (Flanders and Brussels Capital 

region) 1998-2007. Trends in place of death were 

adjusted for cause of death, sociodemographic 

characteristics, environmental factors, numbers of 

hospital beds, and residential and skilled nursing beds 

in care homes. Future trends were based on age- and 

sex-specific mortality prognoses. 

Results: Hospital deaths decreased from 55.1% to 

51.7% and care home deaths rose from 18.3% to 

22.6%. The percentage of home deaths remained 

stable. The odds of dying in a care home versus 

hospital increased steadily and was 1.65 (95%CI:1.53- 

1.78) in 2007 compared to 1998. This increase could 

be attributed to the replacement of residential beds by 

skilled nursing beds. Continuation of these trends 

would result in the more than doubling of deaths in 

care homes and a decrease in deaths at home and in 

hospital by 2040. 

Conclusions: Additional end-of-life care resources in 

care homes largely explain the decrease in hospital 

deaths. Care homes will become the main locus of 

end-of-life care in the future. Governments should 

provide sufficient skilled nursing resources in care 

homes to fulfill the end-of-life care preferences and 

needs of patients. 



Preferred and Actual Involvement of 

Advanced Lung Cancer Patients and their 

Family in End-of-Life Decision-making 

Pardon K. 1 , Deschepper R. 1 , Bernheim J. 1 , Vander Stichele 

R. 1,2 , Mortier F. 1,3 , Deliens L. 1,4 


Care Research Group, Ghent & Brussels, 

Belgium, 2 Ghent University, Heymans Institute for 

Pharmacology, Ghent, Belgium, 3 Ghent University, 

Bioethics Institute Ghent, Ghent, Belgium, 4 VU 

University Medical Centre Amsterdam, Department 

of Public and Occupational Health, EMGO Institute 

for Health and Care Research, Amsterdam, 

Netherlands 

Research aims: Objective was to examine the 

involvement of the understudied population of 

advanced lung cancer patients and their families in 

end-of-life decision-making and to compare their 

actual involvement with their previously stated 

preferences for involvement. 

Methods: Patients with stage IIIb/IV non-small-cell 

lung cancer were recruited by physicians in 13 

hospitals and regularly interviewed between diagnosis 

and death. When the patient died, the specialist and 

GP were asked to fill in a questionnaire. 

Results: Eighty five patients who died within 18 

months of diagnosis were studied. An end-of-life 

decision (ELD) was made in 52 cases (61%). According 

to the treating physician, half of the competent 

patients were not involved in the end-of-life decisionmaking, 

one quarter shared the decision with the 

physician and one quarter made the decision 

themselves. In the incompetent patients, family was 

involved in half of cases. Half of the competent 

patients were involved less than they had previously 

preferred and 7% more. Almost all the incompetent 

patients had previously stated they wanted their 

family involved in case of incompetence, but half did 

not achieve this. Factors associated with actual 

involvement of the patient or family included 

younger age, a palliative treatment goal and type of 

ELD (e.g. the more life-shortening ELDs). 

Conclusion: In half of cases, advanced lung cancer 

patients - or their families in cases of incompetence - 

were not involved in end-of-life decision-making, 

despite the wishes of most of them. Physicians should 

openly discuss ELDs and involvement preferences 

with their advanced lung cancer patients. 

Funding: This study was funded by the Fund for 

Scientific Research in Flanders, the Research Council 

of the Vrije Universiteit Brussel and the AstraZeneca 

Foundation. 



Experience of Time when Living with 

Incurable Disease - A Qualitative Study 

Ellingsen S. 1 , Rosland J.H. 2 , Roxberg Å. 3 , Kristoffersen K. 4 , 

Alvsvåg H. 5 

1 Haraldsplass Deaconess University College, 

Department of Nursing and Health Care, Bergen, 

Norway, 2 Haraldsplass Deaconess Hospital, Sunniva 

Clinic for Palliative Care, Bergen, Norway, 3 Linnaeus 

University, Växjö, Sweden, 4 Agder University, 

Kristiansand, Norway, 5 Haraldsplass Deaconess 

University College, Bergen, Norway 

Background: The healthcare system’s unilateral 

focus on clock time has given motivation to explore 

the diversity of time and in particular the impact of 

time in vulnerable patients. When living with severe 

incurable disease, the diversity and impact of time 

become prominent. 

Aim: Knowledge on patients’ experiences of time 

may be helpful both in planning, organizing, 

preparing and performing treatment and care for 

patients with short life expectancy. Especially to open 

up the communication with the patient and his/her 

relatives, this knowledge is important and therefore of 

general interest. 

Theoretical frame: The philosophical and 

theoretical approach in this study is 

phenomenological. Edmund Husserl, the founder of 

modern phenomenology, has stated that 

consciousness of time is the most important area in 

phenomenology. Martin Heidegger, known as a 

master in phenomenology after Husserl, emphasizes 

the impact of our relationship to time with respect to 

being. 

Method: An unstructured open-ended in-depth 

interview has been used with support of a theme 

guide reflecting different aspects of time. The data 

consist of 26 interviews from 23 participants receiving 

palliative care. The study was carried out from April 

2009 to February 2010 in the respondent’s home or at 

different palliative care units in Hordaland County in 

Norway. 

Preliminary result: Time, context and care are 

related. The patients feeling of security for themselves 

and their relatives determine whether the time feels 

good or bad. It is evident that our relationship to time 

is expressed by body language. The body also 

communicates a rhythm, when health worker and 

the patients have different rhythm the care can 

become an unpleasant experience. Patients, relatives 

and health workers are in different aspects of time, 

normally we are prospective, when death are 

approaching the future become uncertain, which can 

entail that it is a challenge to meet in harmony in the 

present. 



Reality Check: Can Healthcare Professionals 

Ever Provide Spiritual Care? 

Noble A. 1 , Coackley A.C. 1 , Howarth S.H. 1 , Griffiths A. 1 , 

Nurses in an Oncology Centre 

1 Clatterbridge Centre for Oncology NHS Foundation 

Trust, Wirral, United Kingdom 

Background: Spiritual care is a key element of 

palliative care. In the UK, NICE guidelines state that 

spiritual care should be offered as an integral part of 

care. Patients should have opportunities for their 

spiritual needs to be assessed and it is important for 

those assessing need to be highly attuned to the 

spiritual dimension of care. Although spiritual needs 

can be more urgent at the end of life, the results from 

the National Care of the Dying Audit (Round 2) in the 

UK show that this spiritual need is still not being met. 

Aim: The aim of this study was to explore oncology 

nurses’ understanding of spirituality, in anticipation 

of a greater understanding of this elusive area. 

Method: Using a qualitative cross-sectional design, 

inspired by a grounded theory approach, a nonprobability 

purposive sample of seven nursing staff 

took part in a focus group and individual semistructured 

interviews. The participants varied in age, 

grade and years of oncology experience. 

Results: The main findings showed the majority of 

nurses cited lack of time and not knowing what to say 

as significant barriers to giving spiritual care. The 

emotional impact on the nurse providing spiritual 

care was also identified as a burden, causing stress and 

feelings of inadequacy. Lack of education and training 

produced fear and anxiety. However, most nurses 

wished to raise spiritual awareness and to deepen their 


own awareness in this important area. 

Conclusion: Results suggest that despite the 

recognition of the importance of care in this area, 

nurses find difficulty in providing spiritual care to 

patients. Recommendations arising from the study 

include an education programme for nurses to 

increase the skills and confidence in undertaking 

spiritual assessment and enabling them to provide 

spiritual care. 



Transitions between Care Settings at the End 

of Life: Findings from the Nationwide EURO 

SENTI-MELC Study in Belgium, the 

Netherlands and Italy 

Van den Block L. 1 , Miccinesi G. 2 , Deliens L. 3 , Onwuteaka- 

Philipsen B. 4 

1 Ghent University-Vrije Universiteit Brussel, End-of- 

Life Care Research Group; and Department of General 

Practice VUB, Brussels, Belgium, 2 ISPO-Cancer 

Prevention and Research Institute, Florence, Italy, 

3 Ghent University-Vrije Universiteit Brussel, End-of- 

Life Care Research Group, Brussels, Belgium, 4 VU 

University Medical Center and EMGO Institute for 

Health and Care Research, Amsterdam, Netherlands 

Aim: While place of death has been studied in several 

European countries on a population level, little is 

known about transitions between care settings in the 

final months of life in different European countries. 

We investigate prevalence and timing of transitions 

between end-of-life care settings in Belgium, the 

Netherlands and Italy, and reasons for final 

transitions. 

Methods: The EURO SENTI-MELC study is an 

ongoing retrospective registration study via 

representative networks of GPs. In 2009, Belgian, 

Dutch and Italian GPs reported weekly all patients in 

their practice who died non-suddenly. They registered 

place of death, previous places of care for up to 3 

months before death, and duration of stay in each 

setting. 

Results: We studied 2254 patients. In Belgium (BE), 

the Netherlands (NE) and Italy (IT) respectively 58%, 

53% and 60% of patients were transferred at least 

once in the final three months of life. In all countries, 

% of hospital admissions, in particular for patients 

living at home, increased significantly closer to death. 

In case of hospital death, respectively 37%, 41% and 

37% of patients were hospitalized within the final 7 

days of life in BE, NE and IT. 

In BE and NE, “patient needed palliative 

care/treatment” was cited most often by GPs (58% and 

76% respectively) as reason for the final hospital 

transition (vs 14% in IT); “patient needed curative/lifeprolonging 

treatment” was cited most often in IT (51% 

vs 13% and 23% in BE and NE). “Patient or family 

wishes” were cited more frequently in BE (22% and 

25%) and IT (13% and 13%) than in NE (6% and 4%). 

Conclusion: While health care organisation in BE, 

NE and IT differs considerably, many patients in all 

three countries experience transitions between endof-life 

care settings. The relatively high prevalence of 

short hospital admissions in the final week of life, 

especially for patients residing at home, poses specific 

challenges for future health care. 

Fund for Scientific Research, Flander 



Who Provides Information and Care at Home 

in the Last 30 Days of Life: Opportunities for 

Primary Care in Nova Scotia, Canada 

Burge F. 1 , Lawson B. 1 , Van Aarsen K. 1 , Johnston G. 2 , 

Asada Y. 3 , Grunfeld E. 4 , Mcintyre P. 5 , Flowerdew G. 3 

1 Dalhousie University, Family Medicine, Halifax, NS, 

Canada, 2 Dalhousie University, School of Health 

Administration, Halifax, NS, Canada, 3 Dalhousie 

University, Community Health and Epidemiology, 

Halifax, NS, Canada, 4 University of Toronto, Family 

Medicine, Toronto, ON, Canada, 5 Dahousie 

University, Palliative Medicine, Halifax, NS, Canada 

Improving care at the end of life (EOL) is of increasing 

importance for Canadians. Although most Canadians 

tend to die in hospital, many receive EOL care in the 

home during the last month of life. Given the 

increasing trend to keep people in the community as 

long as possible, we wondered who was providing care. 

Objective: To describe who provides EOL 

information and care to adults spending the majority 

of their last month of life in the home. 

Method: This current population-based study is 

gathering information using a mortality follow-back 

survey of informants listed on the death certificate of 

all adults (18+ years) who died of chronic disease in 

Nova Scotia, Canada. Informants are invited to 

participate across six waves over a two year period 

(June 2009-May 2011). Questions focus on care 

preferences, care provided and by whom during the 

last 30 days of life. In this preliminary analysis we 

describe the care provided to decedents spending the 

majority of their last 30 days at home. 

Results: As of October 2010, 244 surveys were 

completed where 105 (43%) decedents spent most of 

their last 30 days at home. 50% were female, 61% 

married, mean age 74 years (SD14.5), 53% died of 

cancer and 60% had private health insurance above 

provincial coverage. While at home many did not 

receive information about what to expect as death 

drew near (39%), what to do at time of death (54%) or 

about the medications for symptom management 

(27%). When provided, a variety of doctors and 

nurses offered this information, particularly doctors 

other than a family physician and nurses. Informal 

caregivers (family, friends) provided the majority of 

help for the decedent’s pain (62%), breathing (43%) 

and anxiety/sadness needs (62%). 

Conclusions: Much of the EOL information, help 

and care provided to those at home are provided by 

the informal caregiver. There may be opportunities 

for primary healthcare to fill some of these gaps. 

Funding provided by the Canadian Institute of Health 

Research. 



Systematic Review of Research Evidence in the 

UK between 1997 and 2010 on: Preferences for 

Place of Care and Death 

Hui V.K.-Y. 1 , Bailey C. 1 , Addington-Hall J. 1 , Cancer, 

Palliative & End of Life Care 



Research aims: Enabling patients to die in their 

place of choice is an important policy issue in the UK. 

Several recent papers suggest, however, that the 

evidence underlying these policies may be more 

complex than initially thought, with, for example, 

preferences being situation-dependent. This study 

therefore aims to review the evidence related to 

preferences for place of care and place of death 

between 1997 and 2010 in the UK. 

Method: Six databases (AMED, EMBASE, OVID 

MEDLINE, CINAHL, PsyInfo, BNI (1997-2007) were 

searched. Inclusion criteria were primary studies 

based in the UK; reflecting patients’ and/or carers’ 

perspectives; published between 1997 and 2010. 

Results: Following abstract and full paper review, 19 

of 4558 citations met inclusion criteria. Preferred 

place of death differs from preferred place of care. 

Home remains the ideal place of death for many, but 

it is qualified by speculation about patients’ changing 

circumstances. Hence, patients and their carers may 

prefer to die or be cared for in a hospice, although 

some ethnic groups (particularly Chinese elders) may 

perceive hospice as repositories of ‘inauspicious’ care. 

Most participants dislike dying in a hospital, but 

many did not reject the idea of being cared for in a 

hospital. Receiving care or dying in a care home is 

very unpopular. Many studies had substantial missing 

data, so complete and more sensitive records of 

preference are needed in future studies. 

Conclusions: In the UK, home is considered to be an 

ideal but unrealistic place of care and death by many 

participants. Hospice seems to be the most popular 

alternative preferred place of care and death. Many 

participants were willing to be cared for in a hospital 

but most dislike the idea of dying there. Receiving care 

or dying in a care home were viewed negatively. 

This study is funded by the Cancer Experiences 

Collaborative. 



Preference for Dying at Home - What Is Meant 

and what Is Said 

Pleschberger S. 1 , Wenzel C. 1 , Lindner D. 1 



Austria 

Background & aims: Preferences for places of 

death have become a key issue in the wider discussion 



on good end-of-life care. Though there is some 

evidence for factors influencing death at home 

stressing the importance of social factors like stability 

of preferences for family carers and patients, little is 

known about the complex process of negotiating 

place of care and place of death throughout the 

process of care. An ethnographic study on recognizing 

and acknowledging dying in home care puts light on 

this issue and adds some insight why preferences and 

outcomes regarding place of care and death might 

differ. 

Method: We applied an ethnographic approach to 

reconstruct trajectories of 16 dying patients in a 

specialist home care service. Data were drawn from 

observations, interviews and analysis of patients’ 

records with the latter being recorded and transcribed 

verbatim. Theoretical sampling as well as several 

coding procedures supported by Atlas/ti software were 

used in analysis following a grounded theory 

approach. 

Results: We found several wishes behind a stated 

preference for dying at home which had an influence 

on the outcome: Some represented a wish to be cared 

for at home until at last, which implies that “at last” is 

something separated from this care and might take 

place somewhere else. Others referred to a wish of 

“living at home” while denying the fact of dying and 

impending death. The process of dying has to be 

separated from the fact that death is about to enter the 

home, the latter being mainly perceived as 

burdensome by family members who want to 

continue living there. 

Conclusion: It is necessary to look for unspoken 

wishes and fears behind preferences for place of death, 

what is said is often not what is meant. IF death at 

home should be possible, professionals have to 

organize ways of communicating and negotiating 

these wishes openly within the families. 

The study was funded by the Austrian Science Fund. 



Suffering and Palliative Care 

Barbosa A. 1 



Suffering is frequently cited as an important 

dimension to be assessed systematically in 

palliative/end-of-life care and research. 

A systemic review of research papers relating suffering 

and palliative care was developed using PUBMed 

database under the primary medical subjects of 

“suffering” and “palliative care”. Several bibliographic 

and conference proceedings were also reviewed. 

We found 754 publications mainly qualitative studies. 

We stabilized four main dimensions of suffering: 

1) physical; 

2) psychological (emotional and mental); 

3) relational (familiar and social); 

4) spiritual. 

From these dimensions we constructed a theoretical 

model of intervention on suffering in patients with 

untreatable and life-threatening illness as a contribute 

for a more relational centred health care intervention 

in palliative care, allowing caregivers, by means of a 

meaningful relationship, to explore all dimensions of 

suffering and prioritize and direct their interventions 

to the patient, the family and the environment. 

Normal existential anxiety vulnerabilized by 

threat/loss of the integrity and/or continuity, as it 

occurs in untreatable and life-threatening illness, can 

be degenerated in existential despair with two main 

directions related to the meaning attributed to the 

vulnerability agents: the loss meaning, developing 

demoralization syndromes with dejection or 

detachment modulations and the threat meaning, 

which can be presented by two main issues: a 

disbelief/denegation or an anxiety/turbulence 

modulation. 

All this ways of suffering expression are determined 

by physical, psychological, mental, socio-cultural, 

family and spiritual components of suffering that 

must be recognised in order to help patients and 

families, using a hope construct, to attain a state of 

existential pride before dying as the main target of 

palliative care teams. 


Withdrawn 

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Life Support Limitation: Perspectives from a 

Pediatric Palliative Care Team 

Kiman R.J. 1 , Conti Wuiloud A. 1 , Naraveckis E. 1 , Requena 

M.L. 1 

1 Hospital Nacional ‘Prof. A. Posadas’, Pediatrics, 

Buenos Aires, Argentina 

Introduction: Life support limitation (LSL) in 

children has the complexity of pediatric care. Most 

publications show Pediatric Intensive Care Units 

(PICU) view. Palliative Care offers another approach 

to LSL situations, within the planning process at 

advanced stages of incurable diseases. The request for 

LSL to Pediatric Palliative Care Team (PPCT) has 

increased. We wonder if this allowed changes in 

management of patients at the end of life. 

Objectives: Characterize the request on LSL to PPCT. 

Evaluate PPCT interventions for LSL at the end of life. 

Material and methods: We analyzed medical 

records of 49 patients seen for LSL between August 

2006 and August 2010. Analyzed categories were: age, 

gender, diagnosis based in four groups (ACT), teams 

requesting LSL, illness trajectory, presence of an acute 

event and level of intervention (Trent Hospice Audit 

Group). For patients who died during follow-up, we 

analyzed place of death, time elapsed since request 

and death, treatments at last week of life, “sedation in 

end of life” (EAPC), participants in decision making 

process and record of it. 

Results: During four years 560 patients were seen, 

generating 3161 PPCT interventions. Patients seen for 

LSL were 49, 78% during an acute event, only 34 died. 

Age ranged 2 months to 21 years, 30% under one year 

old; chronic non-progressive encephalopathy being 

most frequent. No child died at home and 60% died at 

pediatric ward. We identify cultural issues for 

suspension of nutrition and hydration. Palliative 

sedation was prescribed in children dying outside 

PICU. Family involvement in decision-making was 

greater than reported. Withholding occurred in 31 

patients, do-not-resuscitate order in 2 and active 

withdrawal as “compassionate extubation” in one 

case. 

Conclusion: This study allows us to reflect on a 

medical practice characterized by acute interventions 

in chronic conditions. We believe this necessary to 

change towards advanced care planning carried out 

by a PPCT. 



The Dying Phase: European Experts’ Views on 

Important Communication Issues in the Last 

Days of Life 

Romotzky V. 1 , Galushko M. 1 , Popa-Velea O. 1 , Ablett J. 2 , 

Tishelman C. 3 , Swart S. 4 , Voltz R. 1 , on behalf of OPCARE9 

1 University Hospital of Cologne, Department of 

Palliative Medicine, Cologne, Germany, 2 Liverpool 

Psychology Service for Cancer, Royal Liverpool & 

Broadgreen University Hospitals NHS Trust, 

Liverpool, United Kingdom, 3 Department of 


Medical Management Center, Karolinska Institutet, 

Stockholm, Sweden, 4 Department of Public Health, 

Erasmus MC Rotterdam, Rotterdam, Netherlands 

Background: Within the EU 7 th framework project 

OPCARE9, Delphi panels are one method to develop a 

knowledge base for improving care in the last days of 

life. This Delphi aimed at identifying palliative care 

experts’ views on communication issues in those last 

days. 

Method: 3 Delphi rounds were conducted to find out 

how palliative care experts across Europe understand 

psychological and psychosocial support for cancer 

patients in the last days of life and their relatives. 

Delphi #3 used questions with predetermined 

response alternatives to reach final expert consensus, 

defined as at least 75% accordance. 

Participants were asked if certain relevant 

communication issues were appropriate to address 

“for all”, “for most”, “for some” patients or relatives or 

“for nobody”. We also asked about possible 

communication barriers (from 1=totally obstructive 

to 5=not at all obstructive). 

Results: 38 experts with varied professional 

backgrounds from 10 countries participated, with a 

mean of 21 years experience in caring for the dying. 

There was a predominance of physicians and 

psychologists among respondents. 

Consensus was not reached for many items. In the 

domain “important to address for all relatives” the 

item with most accordance was “reassurance of 

availability” (65%). The item “non-verbal 

communication: focusing on feeling and perceiving 

the patient” received the most accordance (61%) in 

the domain “important to address for all patients”. 

Consensus was reached that the lack of qualification 

of staff (75%) and conflicts between staff and patients 

(75%) were obstructive barriers to communication, 

and conflicts between staff and family (72%) almost 

reaching consensus. 

Discussion: In light of these results, optimal staff 

qualification and the nature of conflicts between staff 

and patients or families are important areas for further 

research in regard to the provision of appropriate 

communication in the last day of life. 



Investing in the Physical Environment where 

End of Life Care Is Delivered: What Are the 

Benefits? 

Arthur A. 1 , Wilson E. 1 , Hale J. 2 , Forsythe A. 3 , Seymour J. 1 

1 University of Nottingham, Division of Nursing, 


Nottingham, School of the Built Environment, 

Nottingham, United Kingdom, 3 Aberystwyth 

University, Psychology, Aberystwyth, United 


Background: Little is known about how the 

physical environment affects end of life care. The 

King’s Fund Enhancing the Healing Environment 

programmes (EHE) for Environments for Care at End 

of Life was launched in 2008 involving project teams 

from 20 NHS Trusts. 

Research aim: To evaluate the King’s Fund EHE 

Programme for Environments for Care at End of Life. 

Study design and methods: A longitudinal 

qualitative case-study design was used to explore the 

impact the projects had on end of life care. Six case 

study sites were selected from the 20 projects. Projects 

at the case study sites were: the renovation of three 

mortuary viewing facilities; two centralised 

bereavement services; and a prison palliative care 

facility. Prior to building work a focus group was 

conducted at each site with team members (total 

n=29). After completion of the projects, 31 team 

members across all sites participated in individual 


Results: The incentive to alter the physical 

environment came from the perception that staff 

often had to compensate for failings in the care 

environment. Alterations to these end of life care 

environments led to changes not just in appearance 

but in the way services were organised and delivered. 

New environments meant that the deceased and 

bereaved could be cared for rather than processed. 

Although costs more than doubled from original 

estimates, this was largely due to shifts in aspiration. 

Conclusion: The King’s Fund EHE programme for 

Environments for Care at End of Life raised the profile 

of end of life care within participating Trusts by 

providing a visual focal point. Clinical staff working 

in end of life care settings are often constrained in 

what they can do to the environment if Estates 

Departments take an inflexible approach to 

procurement. Changes designed to improve care 

delivery can produce positive changes for the way in 

which the wider organisation structures and develops 

end of life care services. 



Results from a Street-survey in Kenya on 

Public Preferences and Priorities for End-of- 

Life Care 

Downing J. 1 , Gomes B. 2 , Gikaara N. 3 , Munene G. 4 , 

Daveson B. 2 , Mwangi-Powell F. 4 , Higginson I. 2 , Harding 

R. 2 , on behalf of Project PRISMA 


Kampala, Uganda, 2 Kings College London, 


Rehabilitation, London, United Kingdom, 3 Formerly 

African Palliative Care Association, Nairobi, Kenya, 

4 African Palliative Care Association, Kampala, Uganda 

Background: Local public expectations should be 

considered when developing palliative care. This is 

important in Africa to avoid an uncritical adoption of 

Western models of care. We therefore undertook a 

street survey in Kenya to explore local preferences & 

priorities for end-of-life care. 

Design & methods: Cross-sectional survey in 16 

streets in Nairobi, Kenya (Jan-Feb 2010). We 

approached every 10 th person alternating 

men/women, & included Kenyan nationals aged>18. 

Closed questions explored participants’ views in a 

scenario of serious illness with < 1 year to live. 

Questions asked about “life” & “care” priorities; 

preferences for information, decision-making, place 

of death & focus of care; concerning 

symptoms/problems; experiences of illness, death & 

dying. Descriptive, bivariate & multivariate analysis 

examined variations. 

Results: 201 Kenyans (100 women) represented 17 

tribes (45% Kikuyu). 71% lived in urban areas, 50% 

were unemployed, 80% had secondary education, 

97% were Christian. In the last 5 years, 77% had a 

relative/friend who died & 8 people (4%) had been 

diagnosed with a serious illness. 43% had cared for a 

relative/friend in the last months of life. 34% would 

not want to be told they had limited time left; 25% 

would want care to focus on extending life. Keeping a 

positive attitude & making sure relatives/friends are 

not worried were prioritised above having 

pain/discomfort relieved. The 3 most concerning 

symptoms/problems were pain, family & personal 

distress. Home was both the most (51%) & least (24%) 

preferred place to die. There were socio-demographic 

differences & regression models explained less than 

20% of variation. 

Conclusion: This is the first population-based survey 

of public views on end-of-life care in Africa. The 

survey shows what the majority wants (e.g. to be 

informed, to die at home) but also unveils 

heterogeneity & variations that are not yet fully 

understood. Psycho-social domains are of great 

importance to the general public. 



Bereaved Carer Satisfaction for Someone 

Dying in Long Term Care in Australia 

Parker D. 1 

1 University of Queensland, UQ/Blue Care Research 

and Practice Development Centre, Brisbane, Australia 

This study reports on a bereaved carer survey 

conducted in 60 Australian long term care settings 

(LTC). Bereaved carers of residents who died between 

July 2009 and December 2009 were invited to 

participate. A total of 612 invitations were sent to the 

carers and a total of 103 surveys were returned a 

response rate of 17.3%.The survey included 

demographic data on the residents and carers, 25 

questions from the Family Perceptions of Care Scale 

(FPCS) and 11 questions from the Quality of Dying in 

Long Term Care Scale (QOD-LTC). The FPCS uses a 

Likert scale ranging from very strongly disagree (1) to 

very strongly agree (7). The QOD-LTC uses a 5 point 

Likert score ranging from not at all (1) to quite a bit 

(5). 

Most residents died in LTC (83%) with the remaining 

dying in hospital and one in a palliative care unit. The 

majority of residents had been living in LTC for more 

than 12 months (46.7%), although a proportion had 

been in LTC for less than 3 months (13.3%). Overall 

carers were satisfied with the care provided with a 

FPCS mean overall score of 5.3 and subscale scores 

ranging from 5.1 to 5.9. Overall QOD-LTC score was 

3.7 and subscale scores ranged from 2.6 to 4.0. 

There were significant differences found for 

satisfaction for residents as measured by the FPCS for 

those who died in LTC (5.4) compared to those who 

died elsewhere (4.2) (t=-2.1, df=68,p=0.39), but no 

significant differences by length of stay or 

relationship of bereaved carer to the deceased. There 

were no significant differences found for satisfaction 

for residents as measured by the QOD-LTC for 

residents who died in LTC and those who died 

elsewhere and length of stay but there were significant 

differences for relationship to the bereaved carer with 

partners more satisfied than siblings, children or other 

relatives (x 2 =7.8, df=3, p=0.05). 



Dutch Physicians’ Arguments for Choosing 

the Level of Continuous Sedation until Death 

Swart S.J. 1,2 , Rietjens J.A. 3 , van Zuylen L. 3 , Perez R.S. 4 , 

Zuurmond W.W. 4 , van der Maas P.J. 3 , van Delden J.J. 5 , 

van der Heide A. 3 

1 Erasmus MC, University Medical Center, Public 

Health, Rotterdam, Netherlands, 2 Laurens Antonius 

IJsselmonde, Rotterdam, Netherlands, 3 Erasmus MC, 

University Medical Center, Rotterdam, Netherlands, 


4 VU University Medical Center, Amsterdam, 

Netherlands, 5 University Medical Centre Utrecht, 


Research aims: Palliative sedation, the intentional 

lowering of consciousness of a patient in the last 

phase of life, is regarded as an indispensable treatment 

to alleviate intolerable refractory symptoms. 

Guidelines state that the lowering of consciousness 

must be carefully titrated against the severity of 

symptoms. The aim of this study is to explore the 

arguments of physicians regarding their approach to 

continuous sedation until death. 

Methods: Fifty-four physicians were interviewed indepth 

about their last case of continuous sedation 

until death. Recordings were transcribed verbatim 

and constant comparative analyses were performed 

by four researchers independently. 

Results: Physicians described three approaches in 

choosing the level of sedation. Some physicians 

titrated medication against the severity of symptoms, 

others aimed at deep sedation from the start, and in a 

third group titration was based on external 

instructions, such as medication schemes of 

guidelines, or nurses’ or palliative care teams’ 

instructions. Physicians following the first approach 

tended to start with superficial sedation and increase 

the dosage only if symptoms were insufficiently 

controlled. They generally thought that potential 

awakening could be adequately addressed. Physicians 

following the second approach generally believed 

that refractory symptoms can only be relieved with 

deep sedation. Other arguments for following this 

approach were: prevention of patient’s awakening, 

and promises made to the patient. 

Conclusion: Physicians’ approaches to continuous 

sedation are based on severity of symptoms, depth of 

sedation or expert advice. Doubts about the potential 

of superficial sedation to relieve suffering, the risk of 

non-anticipated and undesired awakening and 

promises to the patient are arguments for an approach 

aimed at depth of sedation. Whether these arguments 

are valid and which approach contributes most to the 

patient’s quality of dying deserves further study. 



Practice Patterns and Perceptions about 

Parenteral Hydration in the Last Weeks of 

Life: A Survey of Palliative Care Physicians in 

Latin America 

Torres-Vigil I. 1,2 , Mendoza T.R. 3 , Alonso-Babarro A. 4 , De 

Lima L. 5 , Cárdenas-Turanzas M. 3 , Hernandez M. 6 , de la 

Rosa A. 6 , Bruera E. 3 

1 Graduate College of Social Work, The University of 

Houston, Houston, TX, United States, 2 The University 

of Texas M. D. Anderson Cancer Center, Department 

of Palliative Care and Rehabilitation Medicine, 

Houston, TX, United States, 3 MD Anderson Cancer 

Center, Houston, TX, United States, 4 Hospital 

Universitario La Paz, Palliative Care Unit, Madrid, 

Spain, 5 Latin American Association for Palliative Care, 

Buenos Aires, Argentina, 6 MD Anderson Cancer 

Center, Center for Research on Minority Health, 

Houston, TX, United States 

Aims: To identify the factors influencing palliative 

care physician prescribing-levels of parenteral 

hydration (PH) for patients during their last weeks of 

life. 

Methods: A representative online survey of Latin 

American palliative care physicians was conducted in 

2010. Physicians were asked to report the percentage 

of their terminally ill patients for whom they 

prescribed PH. Predictors of prescribing-levels were 

identified using logistic regression analysis. 

Results: Two hundred and thirty-eight of 320 

physicians completed the survey (74% response rate). 

Sixty percent of physicians reported prescribing PH to 

40-100% of their patients during the last weeks of life. 

Factors influencing moderate/high prescribing-levels 

were: agreeing that PH is clinically and 

psychologically efficacious (OR, 3·5, 95% CI, 1·5-8·3), 

disagreeing that withholding PH alleviates symptoms 

(OR 3·3, 95% CI, 1·3-8·1), agreeing that PH is essential 

for meeting the minimum standards of care (OR 3·2, 

95% CI 1·4- 7·5), preferring the subcutaneous route of 

PH for patient comfort and home-use (OR 2·9, 95% 

CI, 1·3-6·5), and being younger than 45 years old (OR 

2·6, 95% CI, 1·3-5·2). 

Conclusion: The strongest determinant of 

prescribing-patterns was agreement with the 

clinical/psychological efficaciousness of PH. Our 

results reflect PH prescribing-patterns and perceptions 

that substantially digress from the 

conventional/traditional hospice philosophy. These 

findings suggest that the decision to prescribe or 

withhold PH is largely based on clinical perceptions 

and that most palliative care physicians from this 

world-region are individualizing treatment decisions. 


Withdrawn 



‘What’s in a Name?’ Reflections on Definitions 

of End of Life Care by Experts in Europe and 

Beyond 

Gysels M. 1 , Evans N. 1 , Meñaca A. 1 , Andrew E. 1 , Higginson 

I. 2 , Harding R. 3 , Pool R. 1 

1 University of Barcelona, Barcelona, Spain, 2 King’s 

College London, London, United Kingdom, 3 King’s 

College London, Palliative Care, Policy and 


Aim: As the discipline of palliative care matures there 

is increasing discussion about how to define end of 

life (EoL) care, and it is clear that culture plays a 

central role in this. We explore and discuss the views 

of experts in EoL care from different countries. 

Method: A survey attached to a call for expertise on 

cultural issues in EoL care was sent to experts already 

known to the research team, or identified through the 

literature, European palliative care associations, and 

conferences targeted at palliative care professionals. 

Those who participated in the survey were asked to 

refer us to other relevant experts. The responses were 

analysed using content and discourse analysis. 

Results: We received 168 responses, mainly from 

academics (66) and clinical practitioners working in 

an academic context (39) from 19 countries in Europe 

and beyond. Most respondents said there was no 

universal definition of EoL care and only 14% offered 

a standard definition (WHO, local institution, etc.). 

29% of respondents considered the definition of EoL 

care in their country to be unclear, 3% said that EoL 

care was not separately defined in their country, and 

5% said that there was opposition to the concept for 

religious or cultural reasons. Criteria for the provision 

of EoL care differed across policy and practice. 

Respondents warned about the use of temporal 

criteria for defining EoL care as this may have 

consequences for accessing care. Ideas of what EoL 

care represents centred around 4 key areas: scope, 

timing, personhood and choice. Various culturallyspecific 

terms were identified. 

Conclusion: There is no universally agreed 

definition of EoL care in practice. There were 

common elements in the definitions, but 

disagreement about their relative weight. The values 

underlying the existing diversity could inform a new 

definition and lead to greater consensus on the remit 

of EoL care and standards for good practice. 




Discussing E-O-L (End-of-Life) Issues with 

Terminally Ill Cancer Patients and their 

Families - Our Results 

Eftimova B. 1 , Lazarova B. 2 

1 Clinical Hospital, Dep. of Anesthesia, Reanimation 

and ICU, Stip, Macedonia, the Former Yugoslav 

Republic of, 2 Clinical Hospital, Dep. of 

Pharmacoinformatic, Stip, Macedonia, the Former 

Yugoslav Republic of 

Background: Most of the literature regarding 

communication between health professionals and 

patients at the end -of-life and their families has 

focused on specific topics, like breaking bad news and 

discussing treatment decisions such as CPR and 

advanced directives. Conversation about EOL issues 

often takes place over time rather than as a single 

discusion. 

Aims: Discussing E-O-L issues are of key importance 

to terminally ill patients and their families. There is a 

lack of evidence in the literature to guide the clinical 

practice. The objective of this paper is to explore the 

optimal content and phrasing of information when 

discussing the dying process and E-O-L issues with 

terminally ill cancer patients and their families. 

Materials and methods: We conducted focus 

groups and individual interviews with 20 palliative 

care patients and their families treated in Clinical 

Hospital Stip in past twelve month. The focus groups 



and individual interviews were fully transcribed. 

Further individual interviews were conducted until no 

additional topics were rised. Participant’s narratives 

were analyzed using qualitative methodology. 

Results: Distinct content areas emerged for 

discussing E-O-L issues: treatment decisions at the E- 

O-L; potential future symptoms; preferences for place 

of death; the process of dying; what need to be done 

immediately after death; and existential issues. When 

discussing process of dying participants 

recommended-exploring the person’s fears about 

dying; describing the final days and unconscious 

period; the reduced need for food and drinks. Many 

participants identified the dilemma regarding 

whether to discuss potential complications around 

the time of death 

Conclusions: This paper provide strategies, phrases 

and words whish may inform about the process of 

dying and E-O-L issues. This will be useful especially 

for patients’ families. Further research is needed to 

determine the generalizability of these findings. 



Dignity Therapy as Part of the Holistic 

Approach in a Palliative Care Unit 

Julião M. 1,2 , Barbosa A. 2 , Oliveira F. 1 

1 Unidade de Cuidados Paliativos S. Bento Menni, 

IIHSCJ - Casa de Saúde da Idanha, Idanha, Belas, 

Portugal, 2 Faculdade de Medicina da Universidade de 

Lisboa, Centro de Bioética, Lisboa, Portugal 

Background: Loss of dignity is one of the problems 

patients face at the end of life. 

Dignity therapy (DT) is a brief supportive/existential 

therapy that has proven to enhance patients´ 

satisfaction, meaning and dignity. 

Aim: To study the satisfaction and sense of dignity in 

portuguese palliative patients after DT. 

Study design and methods: This is an 

observational study. 

Inclusion criteria: patient enrolled in the palliative 

care unit (inpatient or outpatient); age≥ 18 years old; 

absence of delirium or dementia; life expectancy< 6 

months and mini mental state> 20. 

Each eligible patient was offered DT, after written 

consent was obtained (100% of the patients). After 

dignity therapy, the patients were asked to answer 

two questions from the Dignity Therapy Patient 

Feedback, regarding satisfaction and sense of dignity. 

Twenty patients completed the study. 

Results: 95% of the patients answered they strongly 

agreed that DT was satisfactory and 85% said that it 

strongly enhanced their sense of dignity. 

Conclusion: In this preliminary study, satisfaction 

and sense of dignity are according to the published 

literature. DT showed to be easy and acceptable for 

both patients and staff. DT should have an important 

role as part of patients´ holistic approach. 



Cultural Issues and End-of-Life Care in 

Europe: Research Priorities from an 

International Meeting 

Gysels M.H. 1 , Evans N. 2 , Meñaca A. 2 , Andrew E. 2 , 

Bausewein C. 3 , Gastmans C. 4 , Gomez-Batiste X. 5 , 

Gunaratnam Y. 6 , Husebo S. 7 , Toscani F. 8 , Higginson I.J. 3 , 

Harding R. 3 , Pool R. 9 

1 University of Barcelona, Barcelona Centre for 

International Health Research (CRESIB), Barcelona, 

Spain, 2 University of Barcelona, Barcelona Centre for 

International Health Research, Barcelona, Spain, 

3 King’s College London, Palliative Care, Policy and 

Rehabilitation, London, United Kingdom, 4 Catholic 

University Leuven, Centre for Biomedical Ethics and 

Law, Leuven, Belgium, 5 Institut Català d’Oncologia, 

Centre Collaborador de l’OMS per a Programes 

Públics de Cures Palliatives / Observatori ‘Qualy’ Final 

de la Vida de Catalunya, Barcelona, Spain, 

6 Goldsmiths, University of London, London, United 

Kingdom, 7 Bergen Red Cross Nursing Home, Bergen, 

Norway, 8 Istituto di Ricerca in Medicina Palliativa 

“Lino Maestroni, Milan, Italy, 9 University of 

Barcelona, Barcelona, Spain 

Aim: The PRISMA project aims to coordinate research 

priorities and measurement to achieve best practice in 

end of life (EoL) care for cancer patients across Europe. 

Its work package on culture organised an 

international workshop to: 

1. identify research priorities for cultural issues in EoL 

cancer research, 

193 


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(Friday) 


2. assess challenges and implications of the integration 

of the culture concept in different contexts, 

3. explore future collaboration on these topics. 

Methods: A scoping exercise on culture and EoL care 

covering the eight European countries participating 

in PRISMA, and the responses to a call for expertise 

informed this workshop, which consisted of 

presentations of research priorities from country and 

disciplinary perspectives, and group discussions. 

Results: Thirty experts participated in the meeting 

and identified the following priorities for crosscultural 

research: 

1. clarifying the concept of culture and identifying 

how it can best be put to practice; 

2. developing key concepts (eg. dignity, vulnerability) 

so that they are applicable in different cultural 

settings, and evaluating whether concepts from 

bioethics are appropriate for EoL care (e.g. autonomy); 

3. understanding experiences of receiving and giving 

care at the EoL, with a focus on older people; 

4. exploring practices in, and interactions between, 

cultural, national and institutional settings; 

5. developing approaches for addressing sensitive 

issues and impaired functioning; 

6. studying the effect of culture on outcomes and of 

measurement on care. 

Conclusion: This first pan-European meeting on 

culture in EoL care started a cross-disciplinary 

dialogue on how to prioritise issues for research that 

can enhance the standard of EoL care across cultures. 

International collaboration is key to taking this 

agenda forward, ensuring that diversity is taken into 

account in the current effort to standardize EoL care. 




Implementation of Do Not Attempt 

Resuscitate Orders in a Japanese Nursing 

Home 

Asai N. 1 , Ohkuni Y. 1 , Matsunuma R. 1 , Nakashima K. 1 , 

Iwasaki T. 1 , Kaneko N. 1 

1Kameda Medical Center, Pulmonology, Kamogawa, 

Japan 

Introduction: While euthanasia is prohibited and 

illegal in Japan, social problems have occurred when 

physicians remove a mechanical ventilator on elderly 

patients based on the family’s wish. In Japan, routine 

Do Not Attempt Resuscitate (DNAR) orders are not yet 

common in many hospitals, nursing homes or other 

skilled nursing facilities. Because of the lack of 

advanced directives, physicians are often required to 

administer unnecessary and undesirable resuscitation 

procedures including mechanical ventilation for the 

elderly often resulting in poor outcomes. 

Purpose and method: This study is to investigate 

whether DNAR orders can be implemented in a 

standard nursing home in Japan. Ninety-eight 

residents who stayed more than one week between 

May 2006 and September 2006 in a 100-bed nursing 

home were evaluated. We asked all the eligible 

residents and their family members if they want to 

receive resuscitation including mechanical 

ventilation explaining the benefit and demerit 

concerning intubation and mechanical ventilation. 

Results: The residents were 54 to 101 years (mean 

83.3), 27 males and 71 females. The result was that 96 

patients (96%) did not want resuscitation and 

mechanical ventilation. The family of one resident 

requested resuscitation since they wanted the resident 

to live longer even if he was unconscious on a 

ventilator. Three residents and/or their families never 

responded regarding their wish on resuscitation. 

Conclusion: It was possible to obtain advance 

directives in a nursing home without confronting 

extraordinary troubles or complaints. In most cases, 

aged residents and their family members when given 

an informed choice, rejected the initiation of 

mechanical ventilation. Implementing advance 

directives in a nursing home has the potential to 

enhance the residents’ and their family members’ 

satisfaction by conducting medical practice which is 

consistent with their wish and thus, physicians can 

avoid unnecessary and undesirable resuscitation 

procedures. 



Tomorrow Never Comes…. Difficulties 

Diagnosing Dying 

Hough J. 1 , Groves K.E. 1 , Jack B. 2 



Kingdom, 2 Evidence Based Practice Research Centre, 

Faculty of Health, Edge Hill University, Ormskirk, 


Aims: To explore factors which influence the 

diagnosis of dying in the acute hospital setting. 

Design: This qualitative study consisted of 16 semistructured 

interviews in the acute hospital setting. All 

nursing and medical staff in the acute hospital were 

invited to attend, except for those in paediatrics, 

obstetrics and gynaecology and Accident and 

Emergency. A schedule of questions was used as a 

prompt and these were based around the use of an 

End of Life Pathway based on the Liverpool Care 

Pathway(LCP). Interviews were recorded, transcribed 

and then analysed for common themes. 

Results: Seven nurses and nine doctors were 

interviewed across all grades and disciplines. 100% of 

the doctors who participated felt that it could be 

difficult to diagnose dying and mentioned the 

importance of knowing that any deterioration is 

irreversible. It was felt by several participants that 

certain conditions make it more difficult to diagnose 

dying especially when the disease trajectory is noncancer 

e.g. extensive stroke, chronic obstructive 

airways disease and heart failure. It was also noted 

that there can be a difference of opinion between 

doctors and nurses as to the appropriate time to 

commence the end of life care pathway. The nurses 

felt that some doctors will often delay starting the end 

of life care pathway and a common response is to wait 

until tomorrow. Another perceived delay in the 

diagnosis of dying was when the doctors had no 

previous knowledge of the patient, especially when 

they were seeing a patient for the first time on-call. 

There was concern from doctors about whether junior 

doctors should be making decisions to start an end of 

life care pathway. 

Conclusions: This study reinforces findings of 

similar studies in other settings with regard to the 

diagnosis of dying and that it is more difficult in noncancer 

situations and if there is no prior experience of 

the patient. It highlights the importance of 

multiprofessional decision making in the diagnosis of 




Nurses and the Decision Making to Palliative 

Sedation 

Van den Eynden B. 1,2 , Willemen F. 1 



Background: Palliative sedation is a palliative care 

technique offering release and comfort to dying 

patients with refractory symptoms. The decision to 

palliative care is an important one, for patient, family 

and caregivers and should be taken meticulously. 

Aim: Literature and policy concerning nursing 

involvement in decision making to deep continuous 

palliative sedation (PS) know important limitations. 

Research results about when and how nurses are 

involved and their opinion and point of view about 

this should have implications and will conduct 

palliative care policy in the future. 

Methodology: A multicentre descriptive study at 

regular wards of acute hospitals in Flanders should 

give an answer on the research question. Qualitative 

research using semi-structured interviews with 

doctors and nurses was the base for drawing of a 

questionnaire. This questionnaire was only one time 

putted to nurses. 

Results: Data collection at 35 wards within 5 acute 

hospitals yield 331 completed questionnaires. 

Response rate was 72%. A huge majority of 90% 

nurses would like to be involved. Nevertheless just 

65% nurses were actually effectively involved. Again 

and again one half of the respondents were of opinion 

that nurses at the ward were involved in time and/or 

in a sufficient way. In which situations this 

involvement was realised remained obscure for 50% 

nurses. De most important task for nurses within the 

decision making process was the holistic patient 

report. The doctor in attendance and the 

communication were the most important influencing 

factors for the nursing involvement. 

Conclusion: Nursing involvement in the decision 

making for palliative sedation knows a vast room for 

amelioration. Changing of attitude, integrating and 

optimizing palliative care policy in acute hospitals 

should offer support. More research is (urgently) 

needed. 



A Kenyan Perspective on Culture in End-of- 

Life Care 

Downing J. 1 , Gysels M. 2 , Gikaara N. 3 , Mwangi-Powell F. 4 , 

Higginson I. 5 , Harding R. 5 , on behalf of Project PRISMA 


Kampala, Uganda, 2 Barcelona Centre for 

International Health Research (CRESIB), University of 

Barcelona, Barcelona, Spain, 3 Formerly African 

Palliative Care Association, Nairobi, Kenya, 4 African 

Palliative Care Association, Kampala, Uganda, 5 Kings 

College London, Department of Palliative Care, Policy 

& Rehabilitation, London, United Kingdom 

Background: Little research has been done looking 

at cultural aspects of palliative care (PC) despite 

developments in Africa over recent years. A study was 

therefore undertaken in Kenya which aimed to 

explore the meanings, concerns & cultural 

interpretations of Kenyan patients with an incurable, 

terminal illness, & their professional carers, with 

respect to end-of-life care, illness, death & dying. 

Methods: The study used guided interviews & focus 

group discussions (FGDs) & was undertaken as part of 

the PRISMA project. 14 patients, with a prognosis of < 

1 year to live, were purposively sampled from PC 

organisations & interviewed. 8 women & 6 men 

ranging in age from 36-90 years, from 4 different PC 

services across Kenya. The majority of participants 

were Christian, represented a range of tribes & 

employment status, & they all had a diagnosis of 

cancer, with some also being HIV positive. 2 FGDs 

were conducted with health professionals (9 nurses & 

5 doctors), representing 12 PC organisations across 

Kenya, with a range of 2 months to 16 years PC 

experience. Data from the interviews & FGDs was 

analysed thematically. 

Results: The results of the study fall into four 

categories: 

1. The patient’s experience of their illness, 

2. Information about how the patient’s life has been 

since they were diagnosed with a terminal illness, 

3. The patient’s coping mechanisms, & 

4. Perceptions, attitudes, priorities & interpretation of 

death & dying. 

Common themes were seen throughout including 

issues around access to care, finances (i.e. cost of 

treatment, transport, providing for their families), 

acceptance of their illness, disclosure, multiple care 

providers, the place of religion/ spirituality, the place 

of death, a ‘good’ death, support structures, the role of 

the health professional & the communities response. 

Conclusion: Culture plays & important part in the 

provision of end-of-life care in Kenya, & clear themes 

were identified which should be considered when 

designing PC programmes. 



Depression and Explicit Requests for 

Euthanasia in End-of-Life Cancer Patients in 

Primary Care in the Netherlands: A 

Longitudinal, Prospective Study 

Ruijs C.D. 1 , Kerkhof A.J. 2 , van der Wal G. 3 , Onwuteaka- 

Philipsen B.D. 3 

1 Praktijkcentrum de Greev, Utrecht, Netherlands, 2 VU 

University, EMGO Institute for Health and Care 

Research, Department of Clinical Psychology, 

Amsterdam, Netherlands, 3 VU University Medical 


Public and Occupational Health, Amsterdam, 

Netherlands 

Research aims: The impact of depression in the 

process leading to a request for euthanasia has never 

been studied in primary care. In hospital oriented 

research a positive relationship was found between 

depressed mood and requests for euthanasia. We 

don’t know if this holds for primary care as well. In 

the Netherlands most (45%) of cancer patients die 

while under the care of general practitioners (GPs) 

and in one out of ten end-of-life cancer patients’ 

death is hastened by GPs through euthanasia or 

physician assisted suicide . This study aims to assess 

the relation between major depression and depressed 


mood and requesting euthanasia in end-of-life cancer 

patients in primary care. 

Study design and methods: A longitudinal, 

prospective cohort in patients in primary care with 

incurable cancer and an estimated of no more than 

half a year. Sixty four patients were interviewed at 

base-line until death with a time interval of 2 months. 

Major depression was assessed with a SCAN diagnostic 

interview at inclusion. At inclusion and in follow-up 

the HADS was used to measure depressive mood. In 

analysis for the HADS depression subscale a cut of 

higher than 10 was used to indicate depressive mood. 

Results: In the study group one patient (that did not 

request for euthanasia) suffered from major 

depression according to the SCAN diagnostic 

interview, and 33% suffered from depressed mood 

according to the HADS depression scale. No difference 

in depressed mood was found between patients with 

or without an explicit request for euthanasia: in the 

last interview before death 40% of patients who 

requested euthanasia and 41% of patients who had 

not requested euthanasia had a score of more than 10 

on the HADS depression scale. 

Conclusion: In primary care major depression or 

depressed mood in end-of-life cancer patients are not 

related to requesting euthanasia. 

Funding: The study was funded by the Netherlands 

Organization for Scientific Research (NWO) 



Improving End of Life Decision Making: What 

Evidence Will Bring Care for the Dying a Step 

Further? A Delphi Study 

Raijmakers N.J.H. 1,2 , van Zuylen L. 2 , Caraceni A. 3 , 

Costantini M. 4 , Clark J. 5 , Lundquist G. 6 , De Simone G. 7 , 

Ellershaw J.E. 8 , van der Heide A. 1 , OPCARE9 

1 Erasmus MC, University Medical Center Rotterdam, 

Department of Public Health, Rotterdam, 


Center Rotterdam, Department of Medical Oncology, 

Rotterdam, Netherlands, 3 National Cancer Institute, 

Department of Palliative Care Pain, Therapy and 

Rehabilitation, Milan, Italy, 4 National Cancer 

Research Institute, Regional Palliative Care Network, 

Genova, Italy, 5 Arohanui Hospice, Education and 

Research Unit, Palmerston North, New Zealand, 

6 Palliative Home Care, Ludvika, Sweden, 7 Pallium 

Latinoamérica, Buenos Aires, Argentina, 8 Marie Curie 

Palliative Care Institute, Liverpool, United Kingdom 

Introduction: End of life decision making is an 

important aspect of end of life care which can have a 

significant impact on the quality of life of dying 

patients. Such decision making may involve 

withdrawing medical treatment, providing intensive 

treatment to alleviate suffering and other 

interventions. Evidence based guidance for these 

practices is limited. 

Aim: The aim of our study was to identify difficult 

issues in end-of-life decision making for which more 

evidence-based guidance might be useful. 

Methods: Experts in palliative care participated in a 

2-round Delphi survey. They identified important 

issues in end of life decision making and rated the 

usefulness of scientific evidence. Artificial hydration, 

artificial nutrition and the use of sedatives were used 

as examples for end of life decision making. Ninety 

experts were consulted from the OPCARE9 countries: 

Argentina, Germany, Italy, the Netherlands, New 

Zealand, Slovenia, Sweden, Switzerland and the UK. 

Results: In the first and second round, the response 

rate was 76% and 60%, respectively. According to the 

experts difficult topics in end of life decision making 

were medical issues, such as effects of (de)hydration or 

indications for sedatives, and communication issues, 

such as addressing patients’ and relatives’ wishes and 

informing them. According to the experts, evidence 

based guidance is most helpful in the following areas: 

optimal strategies for communication with dying 

patients and their relatives, indications for using 

sedatives and the effect of (refraining from) artificial 

hydration on quality of life. 

Conclusions: Communication with terminally ill 

patients and relatives is a challenging issue that would 

benefit from future research. Additionally, more 

evidence on indications for and effects of artificial 

hydration at the end of life is needed. These results 

serve well to prioritize future research for optimizing 

the care of the dying. 



An Exploration of Sedation Practice at the 

End of Life in a UK Hospice 

Miller B. 1 , Woodwark C. 1 , Taylor R. 1 

1 Hospice of St Francis, Berkhamsted, United Kingdom 

Aims: To understand the levels of sedative drug use, 

indications to sedate and documentation of decision 

making in a UK hospice to benchmark and question 

our practice. 

Method: A retrospective documentation survey of 

147 deaths in 2009 in a 12 bed inpatient hospice. 

Prescription charts were analysed and all entries for 

sedative drugs from admission to death were 

recorded, including prn and continuous doses in a 

syringe driver. Narrative text in patient notes was 

examined for indications and discussions about 

sedation with the team, patient and family. 

Continuous sedative doses were defined as 

midazolam 10mg or levomepromazine 25mg over 24 

hours. 

Results: On the last day of life, 80% of patients were 

on sedative doses with mean (and mode) continuous 

doses of 30mg midazolam or 50mg 

levomepromazine. 69% of patients had been on 

sedative doses for 4 days or less before death. 

Most frequent reasons for using sedative drugs were 

agitation (organic or psychological), pain (in 

combination with analgesia) and respiratory 

symptoms. 

Although team discussions (2 MDT handovers per 

day) take place and discussions with patients and 

families are routine, there was poor documentation of 

key conversations about decisions to initiate sedative 

medication and inconsistent recording of the level of 

sedation. It is recognized that the above doses (eg 

midazolam 10mg in 24 hours) may well not be deeply 

sedative in practice, but we could not always tell from 

notes the exact level of sedation in the days before 

death and whether patients were still able to 

communicate and swallow. 

Conclusions: It is now important to compare and 

contrast our data with other palliative units. 

Discussions with team, patient and family around 

unrelieved suffering and decisions to relax or 

continuously sedate will be documented more clearly. 

A tool to record actual level of sedation and 

swallowing will be introduced in line with the EAPC 

Sedation Framework 2010 to help clarify the issue of 

deep continuous sedation. 



Hope beyond Recovery: Chaplain as a 

‘Hopeful’ Presence 

Nolan S. 1 

1 Princess Alice Hospice, Psychosocial & Spiritual Care, 

Esher, United Kingdom 

Using a Grounded Theory approach, this study 

examines the experience of 19 palliative care 

chaplains in counselling dying people. 

Aim: The study aims to understand how palliative 

care chaplains work with patients at the point when it 

has been decided to cease active treatment, the point 

where they risk losing hope and falling into despair. 

Method: The study works with a broad-based 

definition of counselling and uses unstructured 

individual interviews and group work. The data 

analysis uses code-based theory building software, 

and four organic moments in the chaplain-patient 

relationship are identified, each moment being a 

discernable development in the chaplain’s being-with 

the patient: ‘evocative presence’; ‘accompanying 

presence’; ‘comforting presence’; ‘hopeful presence’. 

Result: The study constructs the four moments as a 

theory of ‘chaplain as hopeful presence’ and offers a 

description of the way in which the quality of 

presence can facilitate patients to develop ‘a hopeful 

manner’ in which hope is reconfigured into an 

attribute of being. 

Conclusion: The study concludes that chaplains and 

other palliative care staff should be aware that simply 

being-with an other - ánswering with one’s presence to 

the mortality of the living´ (Levinas) - can, in itself, be 

hope-fostering. 





How Good Is the End of Life Care of Patients 

who Die in an Acute Medical Unit? 

Morris S. 1 , Renton L. 1 , Onyekwuluje A. 2 , Hutton S. 1 , 

Stirling L.C. 1 

1 Camden, UCLH & Islington ELiPSe Palliative Care 

Team, London, United Kingdom, 2 NHS Camden 

Provider Services, London, United Kingdom 

Introduction: The End of Life Care Strategy (DOH, 

2008) emphasises the need to for optimal care at the 

end of life in all settings. Patients admitted via the 

Emergency Department at University College London 

Hospital are moved to the Acute Medical Unit (AMU) 

before being transferred to another ward within the 

Trust. 

Aim: The aim of this study was to examine the 

quality of end of life care of patients who died within 

the AMU. 

Method: Retrospective analysis of the medical and 

nursing notes of patients who died on the AMU at 

UCLH during 2009. The notes were reviewed, looking 

for evidence of, and quality of the use of the Liverpool 

Care Pathway (LCP). In cases where the LCP was not 

used, documented evidence of care meeting each of 

the goals of the LCP was sought. 

Results: 52 patients died during the study period. 34 

(65%) sets of notes were obtained for analysis. 

16 (47%) patients were male with a mean age of 77. 

The mean time from admission to death was 2.4 days. 

11 (32%) patients had cancer. 

The LCP was used in 9 (26%) cases. A ‘Do not attempt 

resuscitation’ form was completed in 28 (82%) cases. 

In 16 (48%) cases, non-essential medication was 

discontinued, and in 22 (65%), 19 (56%) and 20 

(59%) cases respectively, ‘as required’ parenteral 

analgesic, sedative and anti-secretory medication was 

prescribed. 

Evidence of communication with the patient and 

family about the patients deteriorating condition was 

found in 11 (32%) and 26 (76%) cases respectively. 

There was evidence that the spiritual needs of patients 

and families were assessed in 5 (15%) and 10 (29%) 

cases respectively, and that the patient’s General 

Practitioner was informed of the patients’ death in 3 

(9%) cases. 

Seven patients (20%) were referred to the Palliative 

Care Team. 

Conclusion: Even when the LCP is not used, there is 

evidence of good end of life care in the AMU setting. 

However, communication and spiritual care needs to 

be improved. 



Querying the Necessity of Portable Chest Xrays 

on Elderly Patients: Could they Be a 

Trigger in Diagnosing Dying? 

Doran S. 1 , Edison L. 2 , Blinman C. 3 , Husbands E. 2 

1 Gloucestershire Hospitals NHS Foundation Trust, 

Radiology, Cheltenham, United Kingdom, 


Palliative Medicine, Gloucester, United Kingdom, 


Palliative Medicine, Cheltenham, United Kingdom 

Background: Portable chest x-rays can be requested 

on frail elderly inpatients if their clinical condition 

changes. As independent clinical practitioners, 

radiographers often felt that the patient was close to 

death, obsered that the procedure was distressing for 

patients and relatives, and were themselves’ distressed 

by having to perform the test. The limited diagnostic 

accuracy of portable chest imaging is well known. 

Many possible prognostic indicators have been 

reviewed in the literature but to our knowledge, the 

request of a portable chest x-ray has not been 

considered as a red flag for considering the diagnosis 

of dying. A survey was undertaken to assess the 

numbers of patients involved and time to death. The 

influence of the x-ray on the patients management 

will then be reviewed and conclusions drawn. 

Method: 

Phase 1: All portable chest x-rays taken during July- 

August 2010 were pulled from the local register. 

Patients under the age of 65 were excluded as were 

patients on acute assessment units, intensive care, 

coronary care, in theatre or in A&E. Time to death 

from x-ray was recorded. 

Phase 2 to be completed: Patients who have died 

within 1 week of imaging will have a notes review. 

Results: 

Phase 1: 130 portable chest x-rays met the criteria. 

195 


(Friday)


(Friday) 


Nearly one quarter of all patients 23% died within 

3days of imaging. At 1 week post imaging, 35% of 

patients had died. More than half of the patients 58% 

had died within a month of imaging. 

Phase 2 ongoing at time of submission: notes review is 

underway. 

Discussion: Nearly ¼ of elderly inpatient´s who 

underwent a portable chest x-ray died within 3days of 

the examination. This suggests that requesting such 

imaging could be a useful prognostic alert sign. 

Additional review of the notes is underway to evaluate 

the impact of the test on subsequent management of 

the patient and may allow the development of clinical 

assessment pathways with a view to minimize 

unnecessary and distressing investigations at the end 

of life. 



Family Caregiver Views on Patient-centred 

Care at the End of Life 

Brazil K. 1,2 , Bainbridge D. 3 , Ploeg J. 3 , Krueger P. 4 , 

Taniguchi A. 3 , Marshall D. 3 

1 McMaster University, Clinical Epidemiology and 

Biostatistics & Division of Palliative Care, Department 

of Family Medicine, Hamilton, ON, Canada, 2 St. 

Joseph’s Health System, Hamilton, ON, Canada, 


4 University of Toronto, Toronto, ON, Canada 

Aim: The purpose of this study was to evaluate the 

patient-centredness of community palliative care 

from the perspective of family members who were 

responsible for the care of a terminally ill family 

member. 

Method: A survey questionnaire was mailed to 

families of a deceased family member who had been 

designated as palliative and had received formal home 

care services in the central west region of the Province 

of Ontario, Canada. Respondents reported on service 

use in the last four weeks of life, the Client centred 

care Questionnaire (CCCQ) was used to evaluate the 

extent to which care was patient-centred. The 

Accessibility Instrument was used to assess 

respondent perception of access to care. Descriptive 

and inferential statistics were used for data analyses. 

Results: 111 family caregivers completed the survey 

questionnaire. On average, respondents reported they 

used five services during the last four weeks of the care 

recipient’s life. When asked about program 

accessibility, care was also perceived as largely 

accessible and responsive to patients’ changing needs 

(M=4.3 [SD=1.04]). Most respondents also reported 

that they knew what service provider to contact if 

they experienced any problems concerning the care 

of their family member. However, this service 

provider was not consistent among respondents. 

Most respondents were relatively positive about the 

patient-centred care they received. There were 

however considerable differences between some items 

on the CCCQ. Respondents tended to provide more 

negative ratings concerning practical arrangement 

and the organization of care: who was coming, how 

often and when. They also rated more negatively the 

observation that service providers were quick to say 

something was possible when it was not the case. 

Bivariate analyses found no significant differences in 

CCCQ or Accessibility domain scores by caregiver age, 

care recipient age, income, education, and caregiver 

sex. 

Funding: We Care Centre, Toronto, Ontario, 

Canada 



Growing in Confidence?: Educational Needs 

Assessment in the Acute Hospital Setting 

Stickland A.E. 1 , Groves K.E. 1 , Deeming E. 1 , Walker S. 2 , 

Gallagher R.M. 3 


Services, Palliative Care, Southport, United Kingdom, 

2 Southport and Ormskirk Hospital NHS Trust, 

Southport, United Kingdom, 3 University of Liverpool, 


Background: A 6 month pilot of the Gold Standards 

Framework in Acute Hospitals, with associated 

training, was introduced in February 2010 to a UK 

hospital, following previous strong educational 

preparation. 

Aims: A pre and post pilot educational needs 

assessment was completed. This was used to deliver 

focused training and assess change post pilot. 

Methods: Staff were invited to complete 

questionnaires (164 pre/191 post). 54 completed two 

directly comparable questionnaires on a number of 

end of life (EOL) issues. Confidence levels were rated, 

on a scale of one (not confident) to ten (very 

confident). 

Results: Mean staff confidence scores in caring for 

people nearing EOL improved from 7.09 (95% CI 

6.51, 7.67) to 7.52 (95% CI 7.09, 7.95) following the 

pilot. Confidence recognising patients in the last year 

of life improved from 6.96 (95% CI 6.41, 7.52) to 7.31 

(95% CI 6.91, 7.72). Confidence in open 

communication about patient deterioration 

improved from 7.07 (95% CI 6.55, 7.59) to 7.44 (95% 

CI 6.97, 7.92). Mean confidence discussing Advance 

Care Planning (ACP) with patient (pre 6.98, post 7.02) 

and carer (pre 7, post 6.98) remained unchanged. No 

significant differences were shown in mean scores pre 

and post pilot using a paired T-test. The percentage of 

staff stating they developed plans for future care 

following ACP discussions improved from 54% to 

70%. 

Conclusions: It is clear that staff already had 

knowledge and skills from previous training 

initiatives. Confidence rating scales represent 

subjective opinion with multi-factorial influences. 

Confidence levels in having ACP discussions may 

have been negatively affected following realisation of 

what this really involves. Further ACP education is 

ongoing. 



A Comparison of Health Care Expenditure of 

Cancer Terminal Stage Care between Hospice 

and Nonhospice Patients 

Lin C.-C. 1 

1Taipei Medical University, Taipei, Taiwan, Republic 

of China 

Objective: The health policy analysis have noted the 

high cost of the care for the terminal stage patients, 

and that for the cancer patients is evenhigher. Cancer 

has become the leading cause of the death in Taiwan 

since 1982, and cancer deaths have significantly 

increased in recent years. The purpose of this study is 

to compare the expenditures of hospice and 

nonhospice cares of the terminal stage cancer 

patients. 

Methods: The population of the study included all 

the 2,813 cancerous deaths in Taiwan between 

January and December, 2005-2007. The data released 

from the National Health ResearchInstitutes for the 

inpatient expenditures by admission files were 

compared. The subjects were divided into two 

categories, the hospice and nonhospice medical costs 

in the terminal stage cancer patients. 

Results: Among the 2,813 cancer deaths, 545 of 

them chose hospice cares which made up 19.4% of 

the cases. The adjusted relationship between 

hospitalization costs and the use of hospice care. It 

can be seen from this analysis that 62.6%. The 

studydisclosed that the interval of hospice stay for the 

terminal cancerpatient is shorter, but the cost of the 

stay is cheaper, and is lesser by 27.1%. 

Conclusion: We come to the conclusion that the 

hospice care for the terminal stage cancer patient has 

cost benefit. However, the acceptance rate is low 

which makes up only 19.4% of the case. We, 

therefore, suggest that the governmentally support in 

this very aspect is essential, as well as the development 

of hospice care for the terminal stage cancer patients. 



Improving Quality of Life at the End of Life 

for People with Dementia 

Hemming L.J. 1 , Beary T. 1 , Tshuma B. 1 

1 University of Hertfordshire, Oncology and Palliative 

Care, School of Nursing and Midwifery, Hatfield, 


The publication of the End of Life Care Strategy in 

2008 by the government has turned the spotlight on 

the quality of care at the end of life for those with 

dementia. We recognised that work was needed to 

improve care in local elderly care units which had 

clients suffering with mental health conditions, 

including dementia. 

Aim: 

1. To raise awareness at of the needs of clients at the 

end of life 

2. To improve care of the dying in these units 

addressing symptoms like pain and refusal to eat and 

drink 

3. To reduce unnecessary hospital admissions from 

care units when clients were dying so that the clients 

last days and hours were spent with people who knew 

them providing the care. 

Design: Larger units who could supply 

accommodation hosted one day training session to 

which staff from neighbouring units accessed. 

Sessions were rotated across the county to facilitate 

ease of access to the learning opportunities. 

Participants wrote a letter to themselves stating one 

aspect of care they would attempt to instigate 

following their training. These letters were posted 

back to participants six weeks after the training. 

Four key areas evoked the strongest feelings and 

discussion amongst course participants: 

1. When to initiate discussion about end of life care 

preferences and wishes within the disease trajectory 

2. How to recognise and manage pain in people with 

limited verbal skills and dementia 

3. How to deal with clients refusal to eat and drink, 

and families response to this 

4. When were clients entering the dying phase 

Having undertaken the training programme over the 

last year, evaluating the impact of the training on care 

is the key focus. Feedback from course participants 

demonstrates that course content, delivery and 

structure was appropriate. Unsolicited feedback 

indicates that changes have occurred to the quality of 

care given to people with dementia at the end of life, 

there is an increase in referrals to specialist palliative 

care providers and a reduction of unnecessary 

hospital admissions. 

Funding came from the local health service provider. 



Life Purpose and Meaning in Nurses Working 

in Hospital Departments and Palliative Care 

Units 



2 University Hospital Lisbon North, Lisboa, Portugal 

Nurses facing death in their daily practice are often 

stimulated to reflect on life purpose and meaning. 

Our aim is to study how socio-professional and 

training factors contribute to nurse life purpose and 

meaning. 


hospital and palliative care units ( 86.8% female; 

mean age 30.3; mean years of work experience 7.67) 

were assessed by a socio-professional questionnaire, 

the Portuguese validated version of PIL (purpose in 

life test ) and DAP_R. 

Results: We found significant higher life purpose 

and meaning in palliative care nurses comparing with 

oncologic and hematologic departments (p< .013;p< 

.003). There were no significant differences with other 

socio-professional and training variables. We disclose 

also a high positive correlation (p< .005) with DAP-R 

neutral acceptance dimension and a negative 

correlation with DAP-R death fear (p< .01) and escape 

acceptance (p< .0001) dimensions. 

Conclusions: We show a strong relation between life 

purpose and some dimensions of death attitudes with 

different importance in oncologic and palliative care 

units that raise some educational and organizational 

strategies. 



Health Care Team-terminal Patient 

Communication at the “Laguna” Palliative- 

Care-Center Hospital 

Noguera A. 1 , Silva C.C. 2 

1 Hospital Centro de Cuidados Laguna, Madrid, Spain, 

2 University of Carabobo, Language and 

Communication; Faculty of Health Sciences, 

Valencia, Venezuela 

The purpose of this study is to describe the 

communication between the health care team and 

the terminal patients at the “Laguna” Palliative-Care- 

Center Hospital in Madrid, Spain. It is a descriptive 

research partly based on Corbin and Strauss (1998) 

Continuous and Comparative Method, carried out in 

two phases: A Descriptive and Analytical phase for 

which the Statgraphics Plus 5.1 was used. In the 

second Verbal Descriptive phase field notes were 

collected and analyzed with the Atlas/ti software. The 

population consisted of thirty eight (38) patients 


hospitalized at the “Laguna” Hospital between April 

and September 2009. The sample for the Descriptive 

and Analytical phase was non-probabilistic and 

consisted of (20) voluntary adult patients, with no 

psychological disorders, with a Karnosky index ≥30 

points and with no emotional distress that would 

prevent them from correctly comprehending the 

statements in the questionnaire. Data was collected 

through a 20-item questionnaire with a Lickert scale 

(=0.87). Results showed that 90% of the sample had 

an excellent interpersonal relationship with the 

health care team; they feel understood and respected 

by the latter; also, the patients said health care team 

members provide them with affection and genuinely 

care for them. In addition, results suggest that 

communication with the health care team works as 

an integrative element because it allows patients to 

feel protected and accepted in that hospital 

environment. Regarding the second Verbal 

Descriptive phase, emotional aspects contained in the 

interpersonal communication between the patient 

and the health care team were identified, which 

showed patients were highly pleased by the way they 

are treated. 

Keywords: Communication, Health Care Team, 

Palliative Care, Patient, Relationship, Empathy, 

Emotion. 



Factors Affecting Choice of Place of Care at the 

End of Life: A Qualitative Study in Mulago 

Hospital, Uganda 

Namukwaya E.K. 1 , Westerhuis W. 2 , Dunn J. 1 , Leng M. 1 

1 Makerere University College of Health Sciences, 

Department of Medicine, Kampala, Uganda, 

2 University of Utrecht, Utrecht, Netherlands 

Aims: To identify patient, carer and system related 

factors affecting choice of place of care at the end of 

life in the patient population in Mulago hospital, 

Kampala Uganda. 

Methods: A cross-sectional qualitative study was 

done using semi structured interviews with patients 

who were deemed to have with life limiting illness in 

Mulago Hospital and had been referred to the 

palliative care service in addition to getting other 

treatments. Eligible patients who consented to 

participate in the study were recruited sequentially 

and analysis was done on the interview transcripts 

concurrently. Recruitment continued until there was 

thematic saturation. A total of twelve patients were 

recruited. 

Results: Factors affecting the choice of place of care 

at the end of life included; patients’ symptom burden, 

uncertainty of the prognosis and goal of treatment, 

the circumstances in the patient’s home (privacy, 

being in control, children left alone, availability of 

home palliative care services, presence of spiritual, 

social psychological support ) the circumstances in 

the hospital ( pain inducing treatment, restriction of 

visitors, financial, frightening sights of dying 

patients), doctor’s recommendations and carers’ 

preference. 

Conclusion: The place of care is one of the 

determinants of the quality of life of patients with life 

limiting illnesses. Several factors drive patients’ choice 

of place of care at the end of life and not just their 

actual preference. Therefore it is important to identify 

these factors which are limiting choice and to address 

them, this may allow them achieve their preference or 

very close to it. 


Withdrawn 



Palliative Wound Care - A Call for Team Work! 

Torres M.L. 1 , Mandim M.S. 2 , Silva M. 1 , Ribeiro A.S. 1 

1 USF Viver Mais, Maia, Portugal, 2 Hospital de Pulido 

Valente, Lisboa, Portugal 

Introduction: Wounds are common as patients 

approach the end of life and chronic non-healing 

injuries may occur as a result of the deterioration of 

multiple systems that are intrinsic to the dying 

process. 

The plan of care begins with treating the wound 

cause, when possible and addressing patient-centred 

concerns. In addition to treating the cause, local 

wound care in palliative setting is often a challenge, 

and requires a comprehensive approach. 

The goal of this work is to present a systematic 

approach to chronic non-healing wounds, which often 

occur in palliative care, and emphasize the importance 

of cooperation between doctors and nurses. 

Methods: We preformed a research of articles in 

Pubmed and Medical Evidence sites, in Portuguese 

and English, from 2004 to 2010, using the key-words 

“palliative care” and “wounds and injuries”. 

Results: When dealing with a patient in palliative 

setting, it is imperative to establish a good 

communication with patient and family, and warrant 

patients’ dignity and quality of life by addressing 

psychosocial concerns (fear of dying), empowering 

patients’ independence and promoting the highest 

achievable quality of life. 

When wound healing is expected not to improve 

patient’s quality of life, then palliative care should be 

considered. Treatment of nonhealing wounds, such as 

malignant wounds, requires a systematized and 

comprehensive approach, which can be addressed by 

following the mnemonic HOPES: H (Haemorrhage 

control), O (Odor), P (Pain), E (Exudate), S (Superficial 

bacterial burden). Each on of these items should be 

addressed carefully, combining medical and nursing 

abilities, in order to achieve the best outcome. 

Conclusion: Management of wounds in palliative 

care is a challenge for health care practioners and is 

crucial for patient’s quality of life and comfort. In 

addiction to the systematized wound care, it is 

important to communicate with the patient and 

family, to ensure the focus on realistic outcomes. 



End of Life Care in the Acute Setting, Do All 

Patients Benefit? 

Englund F. 1 , Craig V. 1 , Gretton K. 1 

1 Southend Hospital University Nhs Foundation Trust, 

Palliative Care Team, Westcliff on Sea, United 


The aim of this study was to establish current end of 

life care for patients dying in a district general hospital 

and to identify appropriate development initiatives. A 

retrospective audit was undertaken over a three 

month period, 436 notes were reviewed. 

The researcher tried to evaluate whether the patient 

could have remained at home or care home with 

adequate support or whether admission was essential 

due to an acute medical event. 142 patients were 

viewed as appropriate to remain at home, with a 

further 62 patients who may have stayed there. There 

was evidence in 22 cases that advance care planning 

had taken place prior to admission and in 7 cases the 

preferred place of care was known. 

362 /436 patients had a recognisable terminal phase, 

of those 129 were commenced on the Liverpool Care 

Pathway for the end of life ( LCP). Only 66 patients 

were known to the hospital palliative care team 

(HPCT). All patients dying of a chronic life limiting 

illness had a DNR order in place. However examining 

the data according to patients’ disease groups 

identified a great variety of the end of life care they 

received. Cancer, chronic obstructive pulmonary 

disease (COPD) and dementia patients were all very 

likely to have a recognisable terminal phase. Cancer 

patients were most likely to be known to the HPCT, 

commence the LCP and have pre-emptive SC 

medication prescribed. Only small numbers of COPD 

and dementia patients were known to the HPCT, they 

were far less likely to commence the LCP and have 

pre-emptive SC medication prescribed. 

This study highlights the lack of rapid response for 

assessment and treatment for patients at home or in 

care settings necessitating admission. When advance 

care planning has taken place and PPC is known, this 

information is not shared cross boundary. Finally, 

medical notes need to provide more clarity in 

determining ceilings of treatment and parameters to 

indicate a diagnosis of dying in all chronic disease 

groups. 



Dying on the Streets in Germany - Reaching 

out to the Homeless 

Jaspers B. 1,2 , Becker M. 1 , King C. 1 , Song J. 3,4 , Nauck F. 1 

1 University of Goettingen, Department of Palliative 

Medicine, Goettingen, Germany, 2 University Clinic of 

Bonn, Centre for Palliative Medicine, Malteser 

Hospital Bonn/Rhein-Sieg, Bonn, Germany, 



3 University of Minnesota, Center for Bioethics, 

Minnesota, MN, United States, 4 University of 

Minnesota Medical School, Department of Medicine, 

Minnesota, MN, United States 

Aim: A current study explores themes and aspects 

that are of importance for homeless persons in 

Germany when it comes to dying. 

Methods: A semi-structured interview guideline was 

developed, including items from a study in this 

population on these matters undertaken in the U.S.A. 

The guideline was discussed in a focus group in 

Germany, consisting of the researchers from different 

disciplines and representatives from the main 

organisations working with and for the homeless in 

the regions of the cities of Cologne and Bonn. A 

round table with these representatives was conducted 

in order to discuss matters of proband safety and 

probable support needs after an interview covering 

highly emotional matters. Interviewers undertook 

explorative field visits. A pre-test was undertaken with 

probands in a secure environment. Qualitative 

approach with categorisation of themes and aspects 

that are important for homeless persons with regard 

to their end-of-life. Comparison to identified themes 

and aspects in the U.S.A. Software: MAXQDA, version 

2007. 

Results: Pretest with 3 over 60-year old males, living 

in a sheltered accommodation after a decades-long 

life on the streets. Important themes were place of 

death, care of the body, trust/mistrust in others and in 

the family, fear of pain and bad experiences in the 

context of other people’s death. Interestingly, the 

interviews were not perceived stressful. However, this 

may have to be seen against the new background of a 

safer living situation, as compared to living on the 

streets. A series of interviews with 12-15 homeless 

persons will be completed by February 2011. 

Conclusions: Matters of end-of-life care, fears and 

wishes of the homeless have not yet been explored in 

many countries, let alone Germany. Organisations in 

the field of work for the homeless expressed a high 

interest in the study in order to facilitate a more 

dignified death for persons living on the streets. 



Co-ordination and Support Action: A Multiprofessional 

Collaborative Project to Improve 

Care of the Dying for Cancer Patients in 

Europe and beyond 

Dowson J.K. 1 , Ellershaw J.E. 1 , Gambles M. 1 , Mason S. 1 , 

OPCARE9 


Institute, Liverpool, United Kingdom 

OPCARE9, a European collaboration to optimise 

research for the care of cancer patients in the last 

days of life, is a 3 year EU FP7 Co-ordination & 

Support Action grant (due for completion March 

2011). Through collaboratively and systematically 

evaluating the evidence for current practice across a 

range of healthcare environments and diverse 

cultures, it will interrogate the existing evidence base 

and identify knowledge gaps in order to reach 

consensus on optimum care to be delivered at this 

critical stage of the patient journey. The integration of 

knowledge and cultural diversity across 9 partner 

countries is enabled through 7 themed work 

packages.The structure of project management and 

the way in which work packages are organised is a 

unique undertaking, rarely seen in such a complex 

interdisciplinary project environment. This poster 

will demonstrate how the project is managed on a day 

to day basis by a multi-disciplinary international 

management team to ensure that project deliverables 

(outcomes) are met. Specifically, the project’s 

collaborative mechanisms, including timely, semistructured 

face to face meetings, and how ‘cross 

cutting themes’ work together with the two chosen 

project methodologies are explored, enabling 

maximal integration. Project outcomes will impact 

positively on healthcare professionals, informal carers 

and on future research agendas as the need to increase 

resource and effort in this area is well documented 

(WHO, 2004). Key resources to the wider healthcare 

environment and international research community 

include the results of systematic reviews and Delphi 

processes, a list of evaluated tools and technologies 

and European Quality Indicators against which to 

measure future care in the last days of life, other 

outcomes include the development of research 

protocols, recommendations on the future 

development of the Liverpool Care Pathway for the 

Dying patient (LCP) framework at an international 

level and other related published works. 

197 


(Friday)


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Power to the Nurses - Impact of the Liverpool 

Care Pathway for Hospital Nurses 

Hough J. 1 , Groves K.E. 1 , Jack B. 2 



Kingdom, 2 Evidence Based Practice Research Centre, 

Faculty of Health, Edge Hill University, Ormskirk, 


Aims: This study looked at the role of hospital nurses 

in the use of an end of life pathway based on the 

Liverpool Care Pathway. 

Methods: This was a qualitative study involving 

semi-structured interviews which included qualified 

nursing staff from all appropriate disciplines in the 

acute hospital setting. The interview schedule 

included questions about the participants’ 

perceptions of the impact of the use of the pathway 

on the care of patients, their carers and hospital staff. 

All interviews were transcribed and analysed for 

common themes. 

Results: In all there were 16 participants from all 

disciplines and across all grades. The nurse 

participants generally had more formal training with 

regard to the pathway than the doctors. Nurses 

perceived a problem in doctors to whom patients 

were unfamiliar, not being confident in commencing 

the pathway at weekends and at night and would 

automatically involve a more senior medical team 

member. Most nurses felt well supported and 

empowered by the pathway. This was because 

generally there was timely prescribing of ‘as required’ 

medication meaning that they were in a position to 

give symptom control as it was needed. Also the 

necessity of interventions was reviewed in a timely 

manner, in dying patients, so that they felt their care 

was appropriate and purposeful. Several nurses felt 

they needed to prompt the use of the pathway 

particularly when junior doctors were considering the 

commencement of the pathway as some were anxious 

or even ‘scared’ of it. 

Conclusion: Overall the nurses’ perception of the 

value of the use of the pathway was positive. It would 

appear nurses on the whole felt confident in their use 

of the pathway, but felt that there were barriers which 

may be overcome with further support and education 

for medical staff. 



A “Pallium” in Different Styles: A 

Methodological Study for Transcultural 

Guidelines in Palliative Care 

Fazio Tirrozzo M.G. 1 

1 Associazione Cure Palliative Bassa Val di Cecina, 

Cecina, Italy 

Aims: In few decades globalization has sensitively 

modified social structures in countries previously not 

used to migrants, turning their populations into 

multiethnic and multicultural ones. Palliative Care is 

a discipline strongly “patient and family based”, yet, 

health personnel has not often enough transcultural 

competence. Cultural accessibility is fundamental to 

achieve compliance of patients and their families: 

there is evidence of less use of Palliative Care among 

migrants, though they do not need less. Therefore, it 

is important to ensure adequate guidelines specific to 

Palliative Care on transcultural subjects. The aim of 

this Study is to design an appropriate methodology to 

redact guidelines for transcultural Palliative Care for 

each migrant national community. 

Design: 

a) The Chinese community was selected as pilot one. 

b) History of migration and demographic data were 

acquired by literature and official statistics. 

c) Key points to target needs of patients and their 

family in Palliative Care were selected: family and 

genogramme, conception of health and traditional 

medicine, food, religion, taboos, sense of privacy, 

funeral rituals, communication of 

diagnosis/prognosis, attitude towards administration 

of opioids. Literature was consulted on these topics. 

d) Available scientific literature on Palliative Care 

administrated to Chinese patients was reviewed with 

Hawker systematic method. 

e) Guidelines were redacted. 

f) Guidelines were tested on the case of a Chinese 

patient deceased in Hospice. 

Results: The Study outlined crucial cultural 

differences with native population, confirmed by the 

Hospice case, which might invalidate Palliative Care 

with Chinese patients, unless transcultural 

competence is acquired. 

Conclusion: Guidelines are necessary, however, 

with a flexible attitude, as between individuals there 

can be high variability. More research needs to be 

done and cultural mediators consulted. 



The Importance of Philosophical Approach in 

the Spiritual Care of Patients, Relatives and 

Operators in Palliative Care 

Campanello L. 1,2,3 , Cislaghi G. 1 , Sala G. 1 , Martini C. 1 , 

Caraceni A. 1 , Madera R. 2,3,4 


INT, Milano, Italy, 2 Professional School for Practical 

Philosophy, Milano, Italy, 3 SABOF, Philosophical 

Oriented Biographical Analysis Association, Milano, 

Italy, 4 Università Statale Bicocca, Philosophical 

Practice, Milano, Italy 

Introduction: The philosophical approach in 

palliative care is useful to give patients effective tools 

to manage the last days of life. The illness often 

changes the way to see oneself and life; the expression 

of value, needs, wishes facilitates a good end of life 

quality and a “good death” for patient and relatives . 

ABOF´s philosophical approach is spiritual practice 

for everyone: those who have a particular faith, or 

agnostic people, or atheist. Religiosity is embedded in 

spirituality, but it doesn’t immediately implied by it. 

Aim: This project aims at establishing a good 

relationship between patients and relatives to accept 

death and facilitate a “good leave” and to help patient 

to convey and share his spiritual needs. 

Methods: We have designed a spiritual care 

assessment form with the contribution of a 

philosopher, a chaplain and a shiatsu operator, who 

collaborate in a multidisciplinary team, as an 

instrument to share patients needs and goals of care 

and to communicate with the hospice staff. 

Results: We interviewed patients and relatives to 

individualize the best way of care and assistance to 

follow. Also we organize meetings for operators that 

help to make a conscious spiritual issues in their life, 

in order to be able to respect and recognize patient´s 

and relatives’ spiritual needs. 

Conclusion: Our job is based on the importance of 

this philosophical practice in palliative care, because 

this widened approach would offer each person a 

greater amount of possible trajectories in their 

spiritual research and practice, also by means of 

diverse narratives which are accessed through the 

language, spoken or written, said or read but also 

through the symbolic and bodily dimensions. 



Safe Prescribing at End of Life for Patients 

with End Stage Kidney Disease 

Auth-Eisernitz S. 1 , Hugel H. 1 

1 University Hospital Aintree, Palliative Medicine, 


Aim: Only little is known about symptom control in 

patients dying with end stage kidney disease. Recent 

work has shown, that the symptom burden is similar 

to cancer or end stage heart failure. Metabolites of 

Medication, especially opiods, can and may cause 

toxicity. In 2008 a LCP steering group published 

guidelines for symptom control in patients dying 

with end stage kidney disease. They stated that 

Alfentanil is safe to use as it is metabolised in the liver. 

In Uraemia induced nausea, Haloperidol in 50% dose 

reduction is the drug of choice. Midazolam is 

recommended for agitation, dose reduction is 

necessary. For respiratory tract secretions 

Glycopyrronium in reduced doses should be used 

instead of Hyoscine Hydrobromide.In order to 

introduce those new guidelines we wanted to identify 

medications used for symptom control on a renal 

ward, using existing guidelines (Liverpool care 

pathway, LCP). 

Methods: 22 patients retrospectively were included 

in this audit via case note review. All patients died 

between August 2008 and August 2009 in hospital. 

Inclusion criteria was stage 3-5 kidney disease. 

Results: 9 (41%) patients have been commenced on 

LCP. For pain Morphine was mainly used (prescribed 

for 9, given to 5 patients, 9/5). Oxycodone was used 

alternatively (4/4). Codeine has also been used in 2 

cases. Nausea was treated with Cyclizine (5/3) only 

one patient received Haloperidol. Hyoscine 

Hydrobromide has been used mainly for respiratory 

secretions (8/2) and Midazolam for agitation (9/2). 

Nothing has been prescribed or given for dyspnoea. 

Conclusions: The need of prescribing and giving 

medications for different symptoms could be 

identified on a renal ward. Due to the audit results 

Alfentanil will be introduced for pain control. For all 

other symptoms we will recommend using the usual 

medications in reduced doses. The modified version 

of the new guidelines will be introduced initially on 

one renal ward with support of a hospital based 




Enhancing End of Life Care with Dignity: 

Hospice Nursing in Romania 

Vosit-Steller J. 1 , Mitrea N. 2 

1 Simmons College, School for Health Studies, 

Department of Nursing, Boston, MA, United States, 

2 Hospice Casa Sperantei, Education, Brasov, Romania 

Aims: The purpose of this capstone project was to 

characterize the nursing actions currently practiced 

by the Romanian nurses affiliated with Hospices of 

Hope that promote dignified dying and explore the 

identified needs of the nurses to provide the patients 

with a more dignified death. 

Methods: To gather data, a survey method was used 

employing the International Classification for 

Nursing Practice (ICNP) Dignified Dying Survey 

translated into Romanian. The survey included 

demographics and questions (14 Likert scale items, 

and 3 open-ended queries). A convenience sample of 

43 hospice nurses in Romania responded. Descriptive 

statistics, t-tests and content analysis were used to 

analyze the data. Patient needs and nursing 

interventions to promote dignified dying that were 

not included in the quantitative analysis were 

captured by the open-ended questions at the end of 

the survey. 

Results: In this study, end of life nursing actions that 

contributed to dignified death in Romania and to an 

international language of palliative care nursing at the 

end of life were identified and explored. The 

characteristics and actions that promoted dignified 

dying included the hospice nurses’ use of a formal, 

iterative process of assessment and interventions that 

supported pain and symptom management, and 

spiritual comfort for patients at the end of life. The 

participants described the development of family 

centered hospice care to integrate a deep sense of 

Christian Orthodox tradition that was transformative 

for patients and families and suggested a way to 

promote dignity for patients as they approached the 

end of life. 

Conclusion: As the Romanian hospice nurses 

effectively implement recommended interventions to 

improve end of life care, the quality of life experiences 

for terminally ill Romanians will be improved. 

Enhancing global awareness of cultural and spiritual 

differences concerning end of life will facilitate 

international scholarly dialogue among nurse 

scientists. 



End of Life Care Volunteering in the U.K. - 

Developing the ‘Big Society’ 


1 St Christopher’s Hospice, London, United Kingdom, 


Volunteers are an important part of supporting userfacing 

end of life care services. This paper follows the 

progress of a major change and development 

initiative as part of the strategic direction of a large 

London Hospice. Volunteers had worked with the 

hospice in many roles since it opened. Two years ago, 

following the formation of a new training 

programme, several volunteers decided to cease their 

time with the organisation, and a new recruitment 

drive began to bring in a new, diverse and dynamic 

group of volunteers. Currently, the volunteer 

workforce reflects the patient population of the 

organisation more directly. A ‘generic’ user facing role 

has been created, with volunteers being competent 

and confident to fulfil a variety of tasks. Volunteers 

provide hospitality, information and a ‘listening ear’ 

to users visiting the hospice for a variety of reasons on 

a daily basis or within the hospice inpatient unit. Part 

of the ‘generic’ volunteer role includes a new 

development to provide planned community support 


volunteering to fill ‘gaps’ in current provision. Gaps 

include volunteers supporting users within their own 

homes, supporting users through the hospice 

discharge process, and also volunteers supporting 

people coming to the end of their lives in local care 

homes. This initiative supports the hospice’s strategic 

imperative to act as a ‘volunteer hub’ for other 

community based organisations. The results of an indepth 

action research programme exploring 

improvements in quality of both life and death will 

also be presented: 

In addition to the above, the presentation will 

outline: 

The change and development process 

The ‘generic’ volunteer role 

The hospice as ‘volunteer hub’ 

The results of the research programme 

This development will be put forward as a template 

for the development of volunteer programmes across 

all end of life care services: 



Transition to Palliative Care 

Ferraz Gonçalves J. 1 , Neves E. 1 , Costa E. 1 , Silva P. 1 , Edra 

N. 1 , Silva M. 1 , Martinho C. 1 , Cardoso J. 1 , Gonçalves J. 1 

1Instituto Português de Oncologia do Porto, Porto, 

Portugal 

Aim: Despite palliative care has been available for 

about sixteen years in our oncological centre, there 

was the impression that the referral of patients with 

advanced disease is, in many cases, late or not at all 

considered. This study aimed to clarify that 

impression. 

Methods: This was a prospective study of prevalence, 

based on the evaluation of the clinic records of 

inpatients in medical oncology and surgery services of 

our oncologic centre. The evaluation of the records 

was conducted in the second week of each month 

during six consecutive months (December 2009 to 

May 2010), by filling in a form which contained the 

demographic data of the patient, the history of the 

oncologic disease, the reason for hospitalization 

(diagnosis, surgery, chemotherapy, radiotherapy, 

treatment complications, disease progression) and the 

referral to palliative care. 

Results: 747 have been studied. The average age was 

61 years and the median 62 years; the average hospital 

stay was 12.7 days, with a median of 5 days. The main 

reasons for hospitalization were surgery (42%) and 

chemotherapy (18%). 15% of the patients were 

hospitalized for complications and 10% for disease 

progression. Men had a significantly higher period of 

hospitalization (p=0.02). Patients with treatment 

complications had also a significantly higher period 

of hospitalization (p< 0.001). 

From the 75 inpatients with disease progression and 

the 113 with complications, only 26 were referred to 

palliative care (13.7%). 

Conclusion: Although probably not all patients 

belonging to those groups of patients needed 

palliative care, the reduced rate of referrals seems to 

corroborate our initial impression that many patients 

with advanced cancer do not benefit of palliative care. 



Palliative Care in Italy: Low Tech-high Touch? 

Prospective Multicenter Study in 46 PCUnits* 

Zucco F.M. 1 , Guardamagna V.A. 1 , Piovesan C. 1 , Sardo V. 1 , 

Moroni L. 2 




Palliative, Abbiategrasso, Italy 

Research aims: Prevalence analysis of medical 

procedures (i.e: urinary catheterization, intravenous 

or subcutaneous liquid infusion, infusional pump, 

port-a-cath, skin lesions dressings, etc) in palliative 

care italian setting. 


days enrollment period), multicenter (46 PCUs), 

observational study. Data collection period/patient: 5 

weeks/Hospice pts (HO); 9 weeks/Home care pts 

(HOCA) or until death (“Exitus” pts). 

Results: Patients enrolled: 397 (52% men, 48% 

women; 90% over 55 years-old; 98% cancer pts), 203 

(51%) in HOCA, 188 (47.3%) in HO and 6 in other 

assistance settings. From initial to final observation, in 

all pts enrolled, medical procedures % increased: from 

73.4% to 83.5% in HO; from 50.2% to 60.1% at 

HOCA. In died patients cohort (Exitus pts), at final 

check, prevalence of medical procedures was higher 

than in all pts: 90.8% in Hospice pts versus 79.5% in 

Home care pts. The most used procedure was urinary 

catheterization (in all pts: from 42.6% to 56.9% in 

HO; from 16.3% to 31% in HOCA). Continuous 

liquids infusion increased from 31.9% to 44.7% in HO 

and from 19.2% to 32% in HOCA, mainly due to 

hydration purpose (from 25.9% to 38.3% of all 

enrolled pts), and palliative terminal sedation. Also 

Infusional pumps use increased (from 6.9% to 26.1% 

in hospice, from 2% to 16.7% in home care). Skin 

lesions dressings increased only in home care setting 

(from 16.1% to 22.3% in HOCA). 

Conclusion: Medical procedures are still extensively 

used in Italy, both in Hospice and Home care. 

* The Study was cohordinated by Federazione Cure 

Palliative (www.rete-federazione-cure-palliative.org), 

and granted by Ministry of Health (400.000,00 €) 



The Use and Usefulness of Religious Beliefs as a 

Coping Strategy 

Ibáñez del Prado C. 1 , Diaz Sánchez R. 1 , Davies A. 1 , Jose 

Moreno G. 1 

1 Hospital Virgen de la Poveda, Palliative Care, Villa del 

Prado, Spain 

Aims: Investigate the use and usefulness of religious 

beliefs (RB) as a coping strategy (CS) in the final phase 

of life. 

Methods: 83 admitted patients (M: 63.9% F: 36.1%) 

were asked a set of questions about their religious 

beliefs (RB); were they practicing religious believers, 

did they request a Spiritual/Faith leader (SL), did they 

use their RB as a coping strategy (CS) and did they find 

it useful. 

Results: Believers (B): 88%. Non believers (NB): 12%. 

Of the B, 33.7% requested SL, 54.4% used RB as a CS 

and it was useful for 32.15%. Practicing believers (P): 

29%. 87.5% of P requested SL, 62.5% used RB and it 

was useful for 41.7%. Non-practicing believers (NP): 

71%. 12.2% of NP requested SL, 30.6% used RB and it 

was useful for 14.3%. 

Being or not being a P and the use of RB as a CS were 

significantly correlated (chi=9.65 p= 0.002). Being a P 

and the usefulness of the CS were significantly 

correlated (chi=3.24 p=0.015). Not being a P and 

usefulness were significantly correlated (chi= 12.59 

p=0.001). Requesting a SL and the use of RB were 

significantly correlated (chi=8.88 p=0.004). 

Requesting a SL and usefulness were significantly 

correlated (chi=5.65 p=0.043). Not requesting SL and 

usefulness were significantly correlated (chi= 12.59 

p=0.001). 

Conclusions: More than half used RB as a CS and it 

was useful to one third. Results suggest that RB is a 

frequently used CS in the final phase of life, however 

its usefulness remains undetermined. A positive 

relationship can be inferred from the significant 

correlation between P and CS, suggesting that NPs do 

not use RB as a CS as much as Ps. A positive 

relationship can also be inferred from the significant 

correlation between NP and the usefulness of CS, 

suggesting that NPs report less usefulness. Results 

imply that patients who request SL use their RB as a 

CS, but the usefulness of CS can be determined. 

However, it can be inferred that those who do not 

request a SL do not report their RB as a CS useful. 



Implementing the Gold Standards 

Framework in Care Homes: The Impact on 

Achieving Choice of Place of Care and 

Preventing Crisis Hospital Admissions 

Cook R.M. 1 , Byrne S. 1 , Williams L. 1 , Baynes S. 1 , 

Greenham A. 1 

1 NHS Sutton and Merton, Community Services, 


Background: The proxy for choice in end of life care 

is home, yet for people in care homes, that itself 

becomes their home, that indicator is not measured. 

Hospital admissions from care homes in the last 6 

months of life are commonplace, many of which 

result in death. The Gold Standards Framework in 

Care Homes (GSFCH) represents a best practice 

programme which aims to maximise people’s choice 

of place of care and co-ordination between services to 

reduce unnecessary ‘crisis’ hospital admissions in the 

last 6 months of life. 



Aim: To establish the impact of the GSFCH on 

improving people’s outcomes as achieved by 

integrated care, reduced hospital admissions and 

choice of place of care. 

Design: A representative cohort of seven care homes 

involved in the GSFCH programme in SW London. 

Retrospective data collection of a purposive sample of 

five residents in each home (n=35) at baseline, midpoint 

and completion of the programme. Patient 

details were anonymised and data analysed to identify 

best practice as set out in the GSFCH 

Results: 

Identifying dying: coding patients appropriately 

increased by 52% 

Preferred place of care increased by 28% 

Hospital admissions reduced by 14% 

Hospital bed days reduced by 72% 

The use of Advance Care Plans increased by 34% 

Use of Out of Hours forms increased by 54% 

Use of Integrated Care Pathway (for last days) 

increased by 51% 

Conclusion: The GSF CH programme demonstrates 

increased choice of place of care and reductions in 

hospital bed days and admissions during the last 6 

months of life. Outcomes for people were improved 

by delivering improved person-centred and 

coordinated care. Financial savings can be made, and 

these savings could be invested to sustain and further 

develop the GSFCH programme. Further studies to 

establish generalisability of findings, including the 

economic impact, are recommended. Indicators for 

end of life care should include the choice people make 

to die in care homes. 



Parameters Estimating the Length of Survival 

in the End of Life Care 

Ebert Moltara M. 1 , Mesti T. 1 , Ivanetič M. 1 , červek M. 2 , Rajer 

M. 1 , Zavratnik B. 1 , Unk M. 1 , Tonkli A. 1 , Ravnik M. 1 , 

Horvat M. 1 , Gregorič B. 1 , Pelipenko K. 1 , Zakotnik B. 1 , 

červek J. 1 

1 Oncology Institute of Ljubljana, Medical Oncology, 

Ljubljana, Slovenia, 2 University of Ljubljana, 

Ljubljana, Slovenia 

Introduction: Appropriately timed cessation of 

chemotherapy and/or targeted therapy (ChT) is an 

important and critical decision in metastatic cancer 

patients as part of a good end-of-life care in order to 

assure the best possible quality of life and quality of 


Aim: In our previous research we have observed a 

high rate of patients (pts) who received ChT during 

last four weeks of life. Aim of this analysis was to 

identify the predictors of short survival in this group 

of pts that could assist oncologists in decision making 

about appropriate cessation of ChT. 

Material and methods: We analyzed the medical 

documentation of 112 cancer pts who died in 2009 

and have received ChT in the last four weeks of lives. 

We searched for common predictors of survival: 

functional (performance status), clinical (presence of 

fatigue, ascites, pleural effusion, peripheral edema, 

dispnea) and laboratory criteria (elevated CRP, 

leukocytosis, lymphopenia) at the time when last 

cycle of chemotherapy was prescribed. Performance 

status (PS) was recorded according to WHO scale. 

Results: 68,7% out of 112 pts had PS 2 or more 

(21,4% had PS 3). Elevated CRP was recorded in 88,4%, 

leukocytosis in 36,6% and lymphocytopenia in 38,4%. 

At least two aberrant laboratory parameters were noted 

in 68,0% cases, all tree in 11,6%. Fatigue was present in 

77,7%, ascites in 21,4%, pleural effusion in 25,9%, 

peripheral edema in 25,9%, dispnea in 30,4%. 53,7% 

of pts had at least two clinical criteria of short survival 

(9,9% had four or all five). In pts with PS 2 or more 

76,6% had at least three parameters present (clinical or 

laboratory). Body mass index was bellow 20 in 17%, 

but it was not recorded in 33,9% of pts. 

Conclusions: Despite parameters of short survival 

were present in a high proportion of our pts they were 

either not taken into account or deliberately 

neglected when prescribing futile ChT. 

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The Tools of Physiotherapy for Improving 

Quality of Life 

Ferdinandy N. 1 , Schaffer J. 2 

1Hungarian Hospice Foundation, Budapest, Hungary, 

2Hungarian Hospice-Palliative Association, Budapest, 

Hungary 

As participants of physiotherapy conferences we have 

experienced that colleagues working in palliative care 

have very different education both at basic and 

postgraduate level, and the techniques implemented 

by them are varied by areas. 

The base of the international cooperation is the 

mutual acknowledgement of each others’ work, the 

exchange of experience and the thinking together. 

In our presentation we show the Hungarian 

physiotherapist education system, the place of the 

physiotherapists in the palliative team and in the 

professional community. 

With the help of some case studies we demonstrate 

the practical techniques serving for preventive, 

curative and palliative objectives. These techniques 

are to reduce the pain of the patients participating in 

the treatment, to improve their cardio-pulmonal 

conditions, moreover to make both the self-caring 

abilities and the well-being of the patients better. All 

of the above have key role in moving the quality of 

life into a positive direction. 



Edgewalking: Volunteers’ Comments on the 

Questions of the Systematic Review for 

OPCARE9, WP5 (Volunteers) 

Smeding R.E.W. 1 


University of Liverpool, Clinical Sciences, Liverpool, 


Funded by the European 7 th Framework Coordination 

and Support Action Grant, OPCARE9 is a collaborative 

project seeking to improve care for cancer patients at 

the end of life. One of the 5 Work packages in 

OPCARE9 seeks to evaluate the roles, service delivery 

and education and training of volunteers in this 

process.A convenience sample of volunteers, from 

eight of the nine collaborating countries, was invited 

to participate in focused panel discussions and reflect 

on the findings of our Systematic Review on volunteer 

literature. Criteria for membership of the panel was 

experience of working as a volunteer within 

organizations that provide care for cancer patients at 

the end of life and capable of communicating in 

English. Volunteers were asked to provide comments 

from their own experiences to the findings from the 

systematic review analysis as to roles, service delivery 

and education/training. Volunteers were not viewed as 

speaking on behalf of their organization or 

country.The facilitation of this discussion was done by 

an external expert who has professional experience in 

evaluating the integration of volunteers within 

complex structures. The focused panel discussion was 

taped and transcribed to enable valid representation of 

the volunteers’ views.The comments and outcomes of 

this process illustrated the wide range of service 

delivery, roles and education/training— and this in 

very concrete ways— and the core of volunteering as 

experienced by this group and a vivid illustration of 

Kellehear´s (2005) proposal as to the places of 

community and death: namely that they belong 

inseparably together. Permission as to use of results 

was asked from the involved volunteers and any 

references remain country-based, non-representative. 

Comparing these results with aspects of the 

Systematic Review invites a discussion on optimal 

continuation as to the involvement of volunteers at 




Use of Midazolam in Palliative Care: 

Comparison of Daily Practice and Clinical 

Practice Guidelines 

Vincent E. 1 , Debourdeau P. 2 , Filbet M. 3 

1 Desgenettes, Gastroentrology, Lyon, France, 

2 Desgenettes, Oncology, Lyon, France, 3 Lyon Sud 

Hospital, Palliative Care, Lyon, France 

Background: Midazolam (MDZ) is a 

benzodiazepine used in anaesthesia, intensive care 

and palliative care (PC). MDZ is still the gold standard 

for sedation in terminally ill patients and guidelines 

are devoted to its use. The aim of this retrospective 

study is to analyze the uses of MDZ in a secondary care 

hospital recently involved in PC and to compare 

them with the good clinical practices. 

Materials and methods: We used the method of 

audit and a data collection grid based on the French 

recommendations. We included the prescriptions of 

MDZ made in 2009. Exclusion criteria were: use of 

MDZ for pre medication, anaesthesia or intensive care. 

Results: 59 of 64 selected patients were included. 

MDZ was used in 59 of the 130 patients (45%) 

deceased during the same period in the departments 

prescribing MDZ. 47 of 59 patients were hospitalized 

in a department with a PC activity. 84% of patients 

had cancer. The mean duration of MDZ use is 2,2 

days. Traceability of the prescription of MDZ is 

documented in 78% of cases. The justification of MDZ 

use is: sedation (61%), anxiolysis (24%), unknown 

(12%), other (3%). The mean daily doses were: 13 mg 

(1 to 50 mg) at the beginning and 19 mg (1 to 72 mg) 

at the end of treatment. Statistical analysis shows a 

significant difference in favour of departments with a 

PC activity: initial dose of MDZ = 11 vs. 20 mg; final 

dose of MDZ = 15 vs. 34 mg; presence of an evaluation 

of MDZ efficacy = 38% vs. 8%, multi disciplinary 

discussion = 35% vs. 0%; patients’ information = 31% 

vs. 0%; family’s information = 49% vs, 0%. There is no 

difference in doses of MDZ used for anxiolysis and 

sedation. Death occurred during MDZ treatment in 54 

cases (91%). 

Conclusions: MDZ seems overused with indications 

varying from mild anxiolysis to continuous sedation. 

A better utilization of MDZ could be achieved with 

guidelines implementation and with the help of PC 

interdisciplinary teams. 



Human Dignity - A Reflection on Experience 

“The Respect for Life, Dignity and Rights of 

Man Is Inherent to Nursing”ICN 

Caseiro H.I. 1 



The author suggests, a reflection framed in an 

experience lived in a Palliative Care Unit. What are we 

talking about when we refer to Human Dignity?In 

which way in the relationship we establish with the 

other, emerges in the Care the respect for the Dignity of 

the other and for our own dignity?One of the 

objectives of the Plliative Care teams is to allow that 

patients die with dignity. According to Watson the 

supreme aim of care is protection, the focus and reservation 

of humankind of the person, .. where human dignity and the 

humanism are preserved. How we operate this Care 

respecting Human Dignity in a stage where each actor 

finds himself with the finitude of human being and 

simultaneously with the greatness of life? Crossing 

the contribution of scientific evidence in a 

concrete experience, the author begins a 

thoughtful sharing about the same.The principle 

of human dignity is held in the Human Declaration of 

Rights states that All human being is born free and equal in 

dignity and rights, in the Constitution of the Portuguese 

Republic, it is assumed as a principle that supports 

individual rights, being inviolable and inherent to 

personality. The Convention of Human Rights and 

Biomedicine, states that The parts of the present 

convention will protect the dignity and the identity of all 

human being.The National Council of Ethics for the 

Sciences of Life considers human dignity is also na 

evolution concept, dynamic and broaden. One of the 

causes that people refer in a terminal phase as being 

responsible for suffering is the loss of dignity, what is 

considered not only in relation to him, but also to 

others in relation to us, reveling others dimensions that 

are joined when contextualized in human suffering.It is 

proved the need for specific training, scientific 

knowledge, accurate that enhances professionals from 

several professional areas to work in a logics of 

transdisciplinarity, guaranteeing to die with dignity, 

that is, to make this process of dying with dignity. 



Experiences from Starting a Palliative Team 

at a Local Hospital in Oslo 

Saetre L.F. 1,2 , Normann A.P. 1 

1 Hospice Lovisenberg, Oslo, Norway, 2 Lovisenberg 

Diakonale Sykehus, Oslo, Norway 

Aims: 

- Contribute to better care for the palliative patient 

and his/her family and friends 

during hospital stays 

- Increase the hospital staffs experience & skills in 

caring for the palliative patient. 

Study design and methods: Starting with one 80 

% nurse and one 20 % physician in January 2008. A 

physiotherapist was also available in the team. 

During the first months we focused on: 

- good administrative routines for registering of cases 

and patient care and handling 

- sharing information 

- visiting other palliative teams 

Success-criteria: 

- Preparing well before seeing patient and taking part 

in rounds. 

- Solid knowledge base 

- Many years experience working at Hospices 

- Focusing on the patients physical, psychological, 

social and spiritual needs - total pain management. 

- Multiprofessional approach 

- High level of communication skills. 

- Respect for the patients and the staff, especially 

concerning the needs concerning communication 

about death. 

- Awareness of questions concerning death and dying. 

- Ability to demand confidence 

- Being there, being available 

- Having time 

Results: 

- First 6 months an average of 10 per month 

2009 and 2010: Average of 15 cases per month 

We have experienced that 15 cases per month is an 

optimum when seen in 

relation to ambitious goals and available resources in 

the team. 

- Palliative team were nominated for the Annual 

Hospital Service Award in 2009, which indicates that 

our work is highly valued. 

- A semiquantitative survey will be performed and 

presented at the congress. 

Conclusion: The team have been successful in their 

work in relation to the goals. 

Regular and increasing access to patients and a good 

dialog with staff confirms thisThe Hospital 

management have noticed the team’s good work. 

Following this resources were greatly increased from 

1 st October 2010. 



Initial Experience in Organizing Palliative 

Care Assistance to Terminal Heart Disease 

Patients 

Buri C.C. 1 , Carvalho R.T. 2 , Mendes A.F. 1 , Coleto A. 1 , 

Ferreira L.M. 1 , Palomo J.S.H. 1 

1 Instituto do Coração do HCFMUSP, Coordenação de 

Enfermagem, São Paulo, Brazil, 2 Instituto do Coração 

do HCFMUSP, Coordenador do Serviço de Cuidados 

Paliativos do HCFMUSP, São Paulo, Brazil 

Longevity and lifespan as well as the growing number 

of patients suffering from chronic degenerative 

diseases brought the necessity of change in medical 

and nursing assistance. 

Objectives: To report the characteristics of cardiac 

patients during the death process and care in the end 

of life. 

Methods: Descriptive and retrospective study with 

data collecting from medical records of 11 patients 

who died in a university hospital specialized in 

Cardiology from January- to December/ 2006. 

Result: The main reason for hospitalization was 

decompensated congestive heart failure in advanced. 

The average age of patients was 84 + / -09 years. With 

respect to patient comfort related to the relief of pain 

and suffering caused by dyspnea were used opiates 

(morphine) and palliative sedation, concomitant or 

not. The use of sedative solutions occurred in 06 

patients. The analysis of the prescription of the last 

day of life revealed the use of antibiotics in 55%, futile 

medications (vitamins, erythropoietin, thyroid 

hormone, statins) in 64%, glucose tests and laboratory 

tests in 30%, 08 patients (72%) demanded Skin Care. 

With respect to documentation of physiciandiagnosed 

terminally ill, we found that it occurred in 

9 of 11 cases studied. There was no systematization of 

care given in the end of life as well in the medical 

records concerning interventions for comfort and 

suffering relief. 

Conclusion: The spread of the hospice philosophy 

in the multidisciplinary team dealing with care in the 

final phase is urgent and necessary in order to identify 

patients for hospice care. Specific training for the 

multidisciplinary team is critical for an ethical and 


technical practice, appropriate for patients with severe 

and progressive illnesses. 

Keywords: Hospice Care; Nursing; Bioethics; 

Terminal Care; Heart Failure. 



Difficulties, Strategies and Challenges in the 

Relationship of Nurses with Terminal Cancer 

Patients (the Particular Case of a Acute Care 

Hospital) 

Simões Â.S. 1 

1 Hospital Amato Lusitano, Castelo Branco, Portugal 

Cancer is the second leading cause of death in 

Portugal and their percentage of total deaths reveals a 

steady and progressive growth. 

If we consider that, in the opinion of some authors. 

80% of the Portuguese die in a hospital, concern for 

the care provided to terminally ill cancer patients is 

relevant. 

This presentation was drawn from my dissertation 

“Caring in Oncology” of the Master degree in support 

treatment and palliative care in cancer patients at the 

University of Salamanca, evaluated in 08/06/2010 

with 9.5 (from 0 to 10). 

Objective: Analyze the difficulties, strategies and 

challenges in the relationship of nurses with terminal 

cancer patients in an acute care hospital. 

To achieve this I chose a qualitative, exploratory, 

descriptive study based on the narratives of sixteen 

surveyed by semi-structured interview, conducted in 

January and February 2010 and interpreted in the 

light of the analysis of content. 

Results: “The difficulties experienced in the relation 

with cancer patients,” describes the difficulties faced 

by the nurses interviewed in relation to cancer 

patients. For this domain emerged 4 categories: 

Communication (12:33,3%), Death (9:25%), Control 

of symptoms (8:22,2%), lack of teamwork (7:19,5%.) 

“Personal strategies in the relation with cancer 

patients” describes the strategies adopted by the 

nurses in relation to the cancer patient. For this 

domain emerged 4 categories: Defenses (12:36,4%), 

Care (10:30,4%), Personal resources (6:18%), Sharing 

(5: 15.2%). 

“Challenges to improve care for cancer patients” 

shows what nurses expect to be the future of care in 

oncology and related challenges. For this domain 

emerged 4 categories: Specialized units (11, 47.9%), 

Education (6:26,1%), Organization(3:13%), Family 

Support (3:13%). 



Weaving Relationships 

Boffi L. 1 , Patients, Patients’ Families and Staff Members of 

Antea Hospice, Rome, Italy 

1 CIID_ Copenhagen Institute of Interaction Design, 

Interaction Design, Copenhagen, Denmark 

The hospice experience needs to be evaluated as a 

relationships centered care, both in the way a diverse 

equipe takes care of the terminally ill patient and 

his/her family and in the way each staff member 

needs himself/herself to receive “care” to make sense 

of somebody’s else pain and death. 

The project aims to liberate the hospice from the 

scientific burden of not being able to heal terminal 

diseases to become the platform where patients, 

families and clinical staff could build and share 

individual representations of the illness by agreeing 

on symbols that turn unbearable events and losses 

into meaningful experiences in the end-of-life 

relationships. By setting a narrative-based-medicine 

approach in the hospice, the aim is to open a 

symbolic communication among the patient, the 

family caregiver and the staff member more close to 

the patient that could lead to a better palliative care, 

both in terms of pain control and emotional quality 

of life. 

The project started with a 3 weeks infield research in a 

hospice observing, participating and meeting staff, 

families and patients. By interviewing and actively 

engaging them in the research with tasks and design 

games, deep insights were achieved on the way the 

different actors cope with the illness and the end of 

life. 

As outcome, the project solution is an alternative 

hospice journey which comprehends some new tools 

designed to support it, like sharable nesting dolls with 

symbolic little props to fill them; messaging stations at 

trees outside the hospice building that would allow 

difficult conversations, not based on face-to-face and 

real time communication; a tree shaped blanket for the 

moment of the terminal sedation as symbolic link 

through the passing. The alternative hospice journey 

and tools were tested with some nurses and a family 

member and a film with several experience 

prototyping sessions was made with them to 

document the possibilities allowed by the project in 

the end-of-life path. 



Healthcare Service Utilisation by Patients 

Receiving Specialist Palliative Care Three 

Months Prior to Death in a Rural Region of 

Ireland 

Hussain I. 1 , Sheehy-Skeffington B. 1 , McLean S. 1 , Bramwell 

M. 1 , O’Gorman A. 1 , O’Brannagain D. 1 

1 Our Lady of Lourdes Hospital, Department of 

Palliative Medicine, Drogheda, Ireland 

Background: A number of studies have shown that 

patients who are under the care of a community 

specialist palliative care (SPC) service are more likely 

to die at home or in a hospice rather than in hospital, 

when compared with patients not under the care of a 

SPC service. In the North East region of Ireland access 

to SPC services can be limited, especially in rural areas. 

There are no specialist palliative care beds in the 

region and there is no weekend home care service in 

one area of the region. At present there is currently 

limited availability of general support services, such as 

home help, for patients at home. 

Aims: This study will examine the utilisation of 

health care services by patients under the specialist 

palliative care service in a rural region of Ireland. 

Additionally, it will investigate place of death for a 

cohort of patients who died while under the care of 

the regional SPC service and compare this to a similar 

population who died in the region who were not 

under the care of this service, to assess if there is a 

difference in the rate of death at home vs in hospital. 

Methods: This is a retrospective review. Medical 

charts for all patients under the care of the specialist 

palliative care services who died in a two month 

period will be reviewed for demographic data and 

relevant information in the 3 months prior to their 

death. This information includes the number of A&E 

attendances, number of hospital admissions, length 

of time in hospital and involvement of the 

community SPC team. We will specifically look at the 

duration of involvement of the SPC team, the number 

of homecare visits, other services involved 

(Occupational Therapy, Physiotherapy, Social Worker 

etc.) and place of death. We will also examine records 

to determine the place of death for a similar cohort of 

patients who died in the region, who were not under 

the care of the SPC service. 

Results and conclusions: The study is ongoing and 

results will be presented at the congress. 



LCP in Argentina: Time to Build the Bases to 

Make a Difference 

Tripodoro V.A. 1 , Berenguer C. 2 , von Petery G. 1 , Junin M. 3 , 

de Simone G. 1 

1 Pallium Latinoamérica, Buenos Aires, Argentina, 

2 Instituto Alfredo Lanari, Buenos Aires, Argentina, 

3 Hospital Carlos B Udaondo, Buenos Aires, Argentina 

Argentina is a large South American country 

positioned at Level 4 (approaching integration) in the 

global map of PC development. However, palliative 

care (PC) services are still quite unable to reach the 

vast majority of patients who might benefit from 

them. Problems in the healthcare system may be 

attributed to: fragmentation of the system; 

inequalities in healthcare provision; inadequate legal 

framework and policies for the provision of drugs. 

Clearly, there is an enormous need to facilitate PC 

research and teaching activities. In our NGO we are 

devoted to the relief and prevention of end of life 

suffering in Argentina and other Latin American 

countries. The most important factor driving our 

mission is the existence of a large population of 

patients dying with unrelieved suffering. Our aim is to 

optimize research and education for the care of 

patients in the last days of life. The Liverpool Care 

Pathway (LCP) will be a guide for us to focus on the 

care of the dying, providing high quality end of life 

practice. Excellence in care provision is based, not 

only on its institutional framework but also on its 



cultural context. The purpose of this presentation is to 

show the process we started at two teaching hospitals 

and the NGO Home PC Program. After a retrospective 

base review audit (n 60) to establish our current status 

on the documentation of care, we translated and 

adapted the LCP to our environment. We realized the 

lack of the best practices in almost 65% of the goals of 

excellence from de LCP. These outcomes showed us 

that the LCP should reinforce the education programs 

for care of the dying and should be incorporated 

within the culture of the organization. We started 

working in a pilot implementation called PAMPA. 

Our challenge consists on the use of the LCP in our 

clinical setting, our language and our cultural context. 

This requires continuous insight, critical decision 

making and clinical skills. 



Inmigrant Patients with Social Intervention 


Vidaurreta-Bernardino R.L. 1 , Ruiz-López D. 2 , De Luis- 

Molero V.J. 1 

1 Fundación Instituto San José, OHSJD, Palliative Care 

Unit, Madrid, Spain, 2 Centro de Salud Legazpi, Area 

11, Palliative Home Care Unit, Madrid, Spain 

Introduction: We developed a study to determine 

the social dimension of immigrant patients admitted 

to our Palliative Care Unit (PCU). 

Objectives: 

To determine the percentage of immigrant patients 

who needed an intervention by Social Worker and 

their reasons. 

To describe a case report. 

Methods: 

Qualitative descriptive retrospective study. 

Inclusion criteria:Patients admitted to our PCU from 

01/01/2009 to 19/10/2010. 

Results: 

Patients admitted to PCU from 01/01/2009 to 

19/10/2010:961 patients. Patients immigrants in need 

of social intervention:23 patients (2.4% of total 

patients admitted). 

Countries:1 Argentina,1 Colombia,1 Venezuela,1 

Bulgaria,1 China,1 Philipinnes,4 Morocco,1 

Ecuador,1 Dominican Republic,4 Romania,2 

Portugal,1 Italy,1 El Salvador,1 Chile,1 Angola,1 Peru. 

Destination of the patients:17 death at the PCU 

(74%);3 moved to their country (13%);3 (13%) return 

to home. 

Case report: Lin XX, 38 years old, married.He was 

born in China and lived in Spain.His children live 

with their grandparents in China.He was moved by 

the Hospital Palliative Support Team for symptom 

control,with a prognosis of few weeks. He and his 

family did not speak Spanish.Lin had not work visa 

(illegal).He suffered from a terminal illness and was 

derived from the Hospital for pain control.We 

communicate with Lin and his family through 

pictograms,until we found one interpreter.The desire 

of Lin was to travel to China.We also recovered the 

remains of their brother who died recently (cancer 

patient).Finally he travelled to China. 

Conclusions: This is just an example of the 

multidisciplinary work that we do with our 

patients.The increasing inmigrant population in our 

country make these interventions more frequent 

every day.It is very important to solve the barrier of 

paperwork.We should always respect the desire of the 

patient and his family. 



A New Model: Approach to the End-stage of 

Cancer Patients (the Meaning of Existence 

Facing Death) 

Ocek S.O. 1 

1 Kaskaloglu Eye Hospital, Anesthesia and 

Reanimation, Izmir, Turkey 

Purpose: In order to give awareness to people and 

shape their perception.We should use narrative stories 

by adding our experience with today´s science. 

Story1-The patient with Myelofibrosis did not want to 

stay in the hospital.However, red blood cell and 

platelet suspension was supposed to be received 

periodically. He was afraid of death and also didn´t 

want the application of invasive methods, just a 

painless ending.I tried to give him comfort at his 

home.I presented him a life without pain,as he 

wished and he died in peace. 

Story 2- The doctors wanted to discharge the end - 

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stage cancer patient from the hospital. As the patient 

had a pessimistic nature her relatives prefered the 

hospital. Patient with Lung cancer has a respiratory 

distress.The tumor was around the para-aortic 

region.He had pleural metastases.Pericardial 

tamponade had been developed. This situation was 

very difficult for the patient as well as the relatives. 

Respiratory distress,sudden bleeding and pain was an 

extreme anxiety for them. Pain management and 

sedation was very difficult for this patient.I have 

added neuroleptics and hypnotic drugs.The patient 

was very nervous and anxious.After I stopped all 

drugs, I tried to connect with the patient with 

empathy.She lived 21days in comfort and in peace. 

Discussion: The patient could prefer to be taken care 

at the hospital or home environment. 

The physician or caregiver should be able to 

empathize with the patients first as human beings 

then as patients. 

Narrative methods has the opportunity of sharing 

giving significance and meaning to life facing death. 

The physician who is facing constant death has to 

configure his/her perception of death and the search 

of the meaning of existence at regular intervals with 

empathy. 

From my experience I have discovered the repetition 

of similarities within the various different 

cases.Therefore life itself is a narrative that we should 

consider to analyze in order to learn and improve our 

perception on life and death. 



The Death Bed Scene - Involving Pets and All? 

Needham P.R. 1 , Hughes O. 1 

1 Dorothy House Hospice Care, Bath, United Kingdom 

The need for a holistic assessment of our patients 

which includes a detailed family tree is 

incontrovertible. Many would include significant 

others and pets within this, to help pre and post 

bereavement work, and children are encouraged to 

participate in death bed scenes and funeral rites when 

they wish. We, as humans, can often struggle with our 

grief if there is ‘no body’. 

There are stories of the family dog maintaining a vigil 

or appearing to grieve and search for their lifelong 

companion - be it a fellow dog or their deceased 

owner. 

Positive personal experience (which is not isolated) of 

ensuring that one of my dogs had the opportunity to 

witness that her companion was dead led me to 

wonder how often it crosses our mind to raise the 

question with families about where ‘man’s best friend’ 

should be at the crucial time. 

We will demonstrate with a case example how the 

distress of all concerned can be reduced by such 

simple intervention! 



Place of Death of Cancer Patients in 

Singapore: Analysis of Data from a 

Population-based Cancer Registry 

Hong C.Y. 1 , Chow K.Y. 2 , Poulose J.V. 1 , Jin A.Z. 2 , Chee 

E.M.F. 1 , Devi A. 2 , Goh C.R. 1 

1 Duke-NUS Graduate Medical School, Lien Centre for 

Palliative Care, Singapore, Singapore, 2 Health 

Promotion Board, National Registry of Diseases 

Office, Singapore, Singapore 

Aims: This study examined the place of death for 

patients with cancer in Singapore, and determinants 

of deaths at home and in in-patient hospices, using 

data from the Singapore Cancer Registry from 2000 to 

2009. 

Methods: The Singapore Cancer Registry is a 

population-based registry started in 1968. It captures 

information on patient demographics, histological 

diagnoses, staging and treatment, and causes of death. 

Data sources include pathology and hospital records, 

notifications from health professionals and death 

records. Coverage of the cancer cases is 

comprehensive and nation-wide. Data analysis was 

carried out on an anonymised dataset for the years 

2000 to 2009 inclusive. Logistic regression analyses 

were used for adjustment of covariates of factors 

associated with places of death. 

Results: In the ten-year period, there were 52120 

cancer deaths, of which 52.9% occurred in hospitals, 

30.3% at home and 10.7% in in-patient hospices. 

Patients who were older (Odds Ratio, OR, increasing 

for increasing 10-year age groups), female (OR 1.24, 

95% Confidence Interval, CI, 1.18-1.30), Malay (OR 

2.24, CI 2.09-2.40), and whose primary cause of death 

being ‘neoplasms’ (OR 2.93, CI 2.74-3.13) were more 

likely to die at home. As for death in in-patient 

hospices, determinants were older age group, and 

primary cause of death being ‘neoplasms’ (OR 20.0, CI 

15.9-25.0). Patients belonging to the Malay or Indian 

ethnic groups were less likely to die in in-patient 

hospices (Malays: OR 0.36, CI 0.31-0.42; Indians: OR 

0.63, CI 0.52-0.77). 

Conclusions: In the ten-year period 2000-2009, four 

in ten patients with cancer died at home or in inpatient 

hospices. Knowing where cancer patients died 

and what factors determined this would be useful for 

policy formulation and the planning of services to 

care for cancer patients, especially for those who 

choose to die at home or in in-patient hospices. 

Further studies could examine the clinical and 

healthcare service determinants of place of death. 



Do Palliative Care Teams Treat the Same Type 

of Patients? 

Picaza J.M. 1 , Torrubia P. 2 , Barcons M. 3 , Bescos M. 4 , 

Busquets X. 3 , Requena A. 5 , Trujillano J.J. 6 , Nabal M. 7 

1 PADES Mataró ICS, Mataró, Spain, 2 ESAD Zaragoza 

Areas I y II, Zaragoza, Spain, 3 PADES Granollers, 

Granollers, Spain, 4 ESAD Huesca, Huesca, Spain, 

5 Unidad de Emergencias de Aragón, Huesca, Spain, 

6 Facultad de Medicina Universidad de Lleida, 

Bioestadísica y Ciencias Básicas, Lleida, Spain, 

7 Hospital Universitario Arnau de Vilanova, UFISS, 

Lleida, Spain 

Aim: To identify whether there are differences 

between two palliative care populations from two 

different regions in Spain. 

Material and method: Prospective study 

(recruitment period: 6 months and follow up until 

death or 180 days), we recorded and analysed the 

main characteristics of every palliative (PC) patient 

treated by specific PC home teams (HT) in two 

different regions in Spain. Inclusion criteria: advanced 

cancer, over 18 years and first contact with the PCHT. 

Variables: survival time, age, gender, tumour and 

stage, 10 signs and symptoms, performance status, 

cognitive situation, co-morbidity and treatment. 

Statistics: Descriptive analysis, Pearson correlation 

analysis, Ficher test, U Mann Whitney test, Chi square 

test and Survival analysis by Kaplan-Meier and log 

rank test SPSS 14.0. 

Results: 698 patients 56.2% from Aragon and 43.8% 

from Catalunya. 60.3% male with no differences 

between regions. Tumours stages and time from 

diagnosis to PC treatment were similar in both areas. 

Statistics differences showed that patients form Aragon 

were: older (Mean age 74.92 vs 72.13 p< 0.002); 

Original treating services were less often PC units (2.0 

vs 7.8 %, p< 0.05) and the number of visits were lower 

(3.46 vs 5.28 p< 0.000). Main reasons for withdrawing 

were dying and getting out of the program (91.5 vs 

82.7) and being alive (5.1 vs 13.4) p< 0.000. The only 

difference in symptoms was the presence of greater 

levels of anorexia (74,2 vs 66,7 %, p< 0,05).Performance 

Status was lower (48.83 vs 55.65 p< 0.000) and 

Charlson index higher (5.95 vs 5.58 p< 0.002). Survival 

was lower at any point of the survey p< 0.002. (Results 

from the Cox regression analysis by initial symptoms 

will be provided in the final version of the poster). 

Conclusions: Under Palliative care term there is a 

variety population that must be described properly in 

order to facilitate activity, research, quality of care and 

cost effectiveness comparative analysis. 



Why Do Palliative Care Patients Attend the 

Emergency Department? 

Gage A. 1 , Quaglia E. 2 , Carelse L. 3 , Kelly B. 4 , Cheung 

C.C. 3,5 

1 Outer North East London Community Services, 

Ilford, United Kingdom, 2 Royal Free NHS Trust, 

Palliative Care, London, United Kingdom, 3 Camden 

Provider Services, London, United Kingdom, 4 Trinity 

Hospice, London, United Kingdom, 5 University 

College London Hospital, London, United Kingdom 

Introduction: Optimal end of life care includes 

offering patients choice about their preferred place of 

care, communicating information, co-ordinating care 

and planning ahead for crises that might be 

avoidable. 

Aims: This study aimed to investigate why patients 

known to three urban community specialist palliative 

care teams attend the emergency department (ED), 

and what proportion of these attendances was 

inappropriate or potentially avoidable. 

Methods: A three-month retrospective notes review 

of palliative care patients attending the ED was carried 

out from Nov 2008. The project team was alerted of 

attendance by a)the patient/carer, b)the patient’s 

palliative care clinical nurse specialist, or c)the 

emergency/acute medical team. The clinical notes 

were reviewed to assess the reason for attendance, the 

outcome of the attendance, and whether it could 

have been prevented. 

Results: 71 patients attended the ED over the threemonth 

period; 71% had cancer. Of those with cancer, 

46% were receiving active or curative treatment. Of 

the 22 non-cancer patients, 54% had COPD; other 

diagnoses included neurodegenerative (17%), renal 

failure (8%) and heart failure (4%).The most common 

reason for attendance was uncontrolled symptoms 

(48%), of which the most common symptom was 

breathlessness (41%).84% of attendances were 

deemed to be appropriate, 6% inappropriate and 10% 

were difficult to determine. 74% of attendances were 

thought to be unavoidable, with 17% potentially 

avoidable and 9% difficult to determine.87% of 

attendances resulted in admission to a ward, 32% of 

which subsequently died. 

Conclusion: The majority of attendances were 

considered to be appropriate and unavoidable, 

generally resulting in hospital admission. However 

one third of attendances resulted in the patient dying 

in hospital. Identifying those patients earlier and 

facilitating end of life discussions may enable more 

patients to die in their place of choice. 



Do Symptoms Improve Prognostic Models? 

Picaza J.M. 1 , Barcons M. 2 , Bescos M. 3 , Busquets X. 4 , 

Requena A. 5 , Torrubia P. 6 , Trujillano J.J. 7 , Nabal M. 8 

1 PADES Mataró ICS, Mataró, Spain, 2 PADES 

Granollers, ABS Les Franqueses, Granollers, Spain, 

3 ESAD Huesca, Huesca, Spain, 4 PADES Granollers, 

Granollers, Spain, 5 Unidad de Emergencias de Aragón, 

Huesca, Spain, 6 ESAD Zaragoza, Zaragoza, Spain, 

7 Facultad de Medicina Universidad de Lleida, 

Bioestadísica y Ciencias Básicas, Lleida, Spain, 

8 Hospital Universitario Arnau de Vilanova, UFISS, 

Lleida, Spain 

Aim: To develop 4 models of death probability (DP) 

at 7-15-30 and 45 days based on symptoms detected 

by palliative care (PC) Home Care Supportive teams 

(HCST) using classification trees (CT) system. 

Material and method: Coordinate analytic 

prospective study (recruitment period: 6 months and 

follow up until death or 180 days). Inclusion criteria: 

advanced cancer patients treated by PC-HST in 

Aragon and Catalunya, over 18 years and first contact 

with the PCHT. Variables: survival time, age, gender, 

tumour and stage, 10 signs and symptoms assessed by 

a categorical scale (0-4), performance status, Cognitive 

situation, co-morbidity and treatment: Statistics: 

Descriptive analysis, Survival analysis by Kaplan- 

Meier, log rank test SPSS 14.0 and CT type CART 

(Classification and regression trees). Answer-Tree. 

Models Program with cross-validation (10 partitions) 

and ROC analysis (AUC-CI 95%-). 

Results: 698 patients 56.2% from Aragon and 43.8% 

from Catalunya. 60.3% were male with no differences 

between regions. Main Age was 73.70 (SD 12.45) 68% 

treated in urban areas Tumours stages were similar in 

both areas. Mean Performance Status by Karnofsky 

Index was 51.82 (SD 14.88). Main Charlson scale was 

5.79 (SD 2.38) Mean Survival score by TKS 11.83 (SD 

6.69). Mean survival estimation was 72.43 (SE 2.53). 

The common variables selected by the four CT were: 

Anorexia, asthenia, level of conscience, dysphagia, 

dyspnoea and the us of a subcutaneous butterfly. Each 

model developed 8 decision rules with an assignment 

rank of probability from 2.2% to a maximum of 

99.1%. Models at day 7 and 15 (used anorexia, level of 

conscience and dysphagia to predict high DP with 

AUC de 0,88(0,86-0,90) and 0,81(0,79-0,83). Models 

at day 30 y 45 selected asthenia, anorexia and level of 

conscience to predict high DP with AUC de 0,78(0,77- 

0,80) y 0,77(0,75-0,79). 

Conclusions: Anorexia, level of conscience and 

dysphagia and asthenia are useful to predict death by 

Classification and regression trees. 




Socio-demographic Characteristics of Patients 

at Palliative Care Unit 

Costa-Requena G. 1 , Cristófol R. 1 , Pirozzo H. 1 , Baqué A. 1 , 

Daer A. 1 , Joares A. 1 , Zúmel L. 1 , Cañete J. 2 

1 Antic Hospital St Jaume and Sta Magdalena, Mataró, 

Spain, 2 Hospital of Mataró, Mataró, Spain 

Aims: In the last few years a large number of 

palliative care programs have been implemented in 

Spain. The identification of socio-demographics 

characteristics of patients admitted at palliative care 

unit, can help to address the efforts to improve quality 

of palliative care practice. This study describes the up 

to date socio-demographic characteristics of the 

patients at the palliative care unit. 

Methods: This study consists of a retrospective study 

of 567 inpatients at the palliative care unit, located in 

socio-health center. The data was recollected from 

January 2006 to August of 2009. This study presents 

descriptive statistics. 

Results: The patients at the palliative care unit were 

predominantly men 375 (63%) versus 210 (37%) 

women. The median age was 80 years (range 39-102). 

About 55 (9%) patients were admitted more than 

once resulting in a total of 622 admissions. The 

patients stay in the hospital have a median duration 

of 13 days. The majority of the patients 472 (83.2%) 

had advanced cancer, other medical pathologies were 

in 95 (16.8%) patients, such as dementia, 

cardiovascular or insufficiency respiratory disease. 

The findings suggest gender differences in the 

distribution of the illness at the end of life. 

Conclusion: Demographic characteristic of the 

patients is one variable that could be taken into 

account to improve clinical activities at palliative care 

unit. 



What Are Important Treatment Aims in the 

Last Three Months of Life? 

Claessen S.J.J. 1 , Echteld M.A. 1 , Francke A.L. 1,2 , Van den 

Block L. 3 , Donker G.A. 2 , Deliens L. 1,3 

1 VU University Medical Center, Department of Public 

and Occupational Health/EMGO+ Institute, 

Amsterdam, Netherlands, 2 NIVEL, Utrecht, 

Netherlands, 3 End-of-Life Care Research Group, 

Ghent University and Vrije Universiteit Brussel, 

Ghent and Brussels, Belgium 

Research aims: Nowadays, palliative care is 

considered as a continuum from the diagnosis of a 

life-threatening illness until death. Aim of this study 

was to test the assumption of a decreasing importance 

of curative or life-prolonging treatments and 

increasing importance of palliative treatment towards 

death. 

Study design and methods: Data were acquired 

from a Dutch nationally representative surveillance 

network of sentinel general practitioners. GPs filled in a 

21-item registration form for all of their patients who 

died non-suddenly in 2009. GPs were asked 

retrospectively whether cure, life prolongation and 

comfort/palliation were important treatment aims. 

This was measured on a 5-point scale ranging from ‘not 

at all important’ to ‘very important’. This was asked for 

three time periods: months 2 and 3 before death, 2 nd to 

4 th week before death and last week before death. 

Result: The data concerned 279 patients who died 

non-suddenly at home or in a residential care home. 

55% had cancer and 45% were non-cancer patients. 

50% of the patients were aged between 65 and 84 

years. In all patients and all periods distinguished, the 

% of patients in which the palliative treatment aim 

was (very) important increased to death. GPs 

considered the palliative treatment aim (very) 

important in 73% of all patients in months 2 and 3 

before death, while this was the case in 89% in the 2 nd 

to 4 th week and in 95% in the last week before death. 

However, in 7% of these patients who all died nonsuddenly, 

cure was still considered a (very) important 

treatment aim in the last week of life. In 9% of the 

patients life prolongation was considered a (very) 

important treatment aim. 

Conclusion: Palliation is important in an increasing 

number of patients when death nears. Though cure 

and life-prolongation are in some patients with a 

foreseen death still (very) important treatment aims, 

even in the last week of life. 

Main source of funding: ZonMw-Netherlands 

Organisation for Health Research and Development 



Ambulatory in a Palliative Care Unit in Brazil 

- Working with Indicators 

Pinto C.S. 1 , Naylor C. 2 , Reis T.C. 2 


Rio de Janeiro, Brazil, 2 National Cancer Institute of 

Brazil, Rio de Janeiro, Brazil 


the Palliative Care unit from the National Cancer 

Institute in Brazil. It has all the modalities of servicing 

in Palliative Care and about 1100 patients by month. 

Objective: This paper aims to describe some 

indicators used to measure the profile of our 

outpatients. 

Materials and methods: Data were collected between 

May-September 2010. For this work, 100% (n=421) of 

the patients that beginning the follow up in our unit 

in the same period, were studied. 

Results: In the outpatient unit, the average was 

about 550 patients, including about 85 admissions a 

month. The average was: 512 medical consults, 209 

social service consults, 225 nutritious consults, 198 

psychological consults, 217 physiotherapy consults 

and 412 nursery consults. The nursery receives 

making some bandages and ostomies care, in a 

average of 1654 procedures a month. In the admitted, 

50.5% are men (n=213) and the age average is about 

56 years old. Performance Status (KPS) is equal to or 

above 60 in 60% (n=252) and 40% (n=169) of the 

patients arrive to our ambulatory unit with a KPS 

equal to or below 50. At the time of the admittance, 

44% (n=191) of patients suffer with constipation and 

30,8% (n=130) with dysphagia. By the Edmonton 

Symptom Assessment Scale (ESAS), the prevailing 

symptoms are: pain, fatigue, sadness and anxiety. The 

moderate pain reaches 34.2% (n=144) and the strong 

pain reaches 17,5% (n=74) of the studied patients. 

About the social profile: 11,2% (n=53) are illiterate, 

46,4% (n=193) have least than 4 years of study, 4,6% 

(n=19) don’t have any income and 63,6% (n=265) 

earn between 1 to 3 minimum wages ($208 to $850). 

Conclusion: Based on data presented, the team is 

able to be focused on controlling symptoms and the 

manager has the opportunity to make changes and 

the request training for that the professionals be better 

qualified for the job. 



Multicentre Study on the Epidemiology of 

Chronic Pain, Treatment Appropriateness 

and Satisfaction in Hospitalized Cancer 

Patients in Catalonia (Spain) 

Porta-Sales J. 1 , Espinosa-Rojas J. 2 , Nabal Vicuña M. 3 , 

Vallano Ferraz A. 4 , Verger Fransoy E. 5 , Planas Domingo 

J. 6 , Rodriguez D. 7 , Pascual López A. 8 , Badosa G. 9 , Beas 

Alba E. 2 , Gómez-Batiste X. 2 


L’Hospitalet de Llobregat, Spain, 2 Institut Català 

d’Oncologia, QUALY, L’Hospitalet de Llobregat, 

Spain, 3 H. U. Arnau Vilanova, Unitat Cures Palliatives, 

Lleida, Spain, 4 H. U. Arnau Vilanova U. Bellvitge, S. 

Farmacologia Clínica, L’Hospitalet de Llobregat, 

Spain, 5 H. Clínic, S.Radioterapia, Barcelona, Spain, 

6 H.U. El Mar, Dept. Cures Palliatives, Barcelona, Spain, 

7 H.U. El Mar St. Joan, Unitat Cures Palliatives, Reus, 

Spain, 8 H. StaCreu i St. Pau, Unitat Cures Palliatives, 

Barcelona, Spain, 9 Institut Català Oncologia, S. 

Oncologia Mèdica, Girona, Spain 

Aim: To describe the frequency and causes of chronic 

pain(CP), the appropriateness of its treatment and 

satisfaction in hospitalized patients (pts). 

Methods: Cancer pts admitted in oncology, 

radiotherapy, haematology & palliat care wards with 

pain or analgesic treatment for ≥ 2wks were included. 

Assessment included demographic, treatment, Brief 

Pain Inventory(BPI),Pain Management Index(PMI) 

and Pain Perception with Pain Management (PPPM). 

Results: We included 627 pts (100% sample size) 

from 34 centres. Prevalence of CP was 64.1%.Of the 

402 pts with CP, 206(51.2%) were evaluable and 196 

were not (163 non-consent, 33 cognitive failure). 

Evaluable pts: mean age 63.2yrs-old, median KPS 60, 

males 54.4%, no current antitumoral treatment 

48.1% and median time from diagnosis 9.5 months. 

Median duration CP was 6 wks. The CP 

pathophysiology was: somatic 28.1%,visceral 

22.7%,neuropathic 6.4%,mixed 38%,others 4.8%.CP 

was related with cancer in 80% pts, treatment 3.4%, 

nor cancer- nor treatment 10.7%, unknown 5.9%; the 

mean average pain (0-10) was 4,maximum pain 7 and 



minimum 1.6.Overall mean CP interference was 

4.7.Mean CP improvement was 67%. No regular 

analgesia in 4.4% pts, analgesia prn 8.2% pts, and 

with strong opioids 62.6% pts.The mean daily oral 

morphine dose equivalent:186.2mg. One single 

analgesic type was taking by 47.1% pts and 

combinations by 35.5%. Over 75% pts had rescue 

analgesia prescribed. The appropriateness of analgesic 

treatment (PMI)was 83.3%.Satisfaction with the 

physician & nurse care 88.7% pts, with respect to pain 

relief 71.6% pts were satisfied. 

Conclusions: 

1) Presence of recent CP with moderate impact; 

2) CP is greatly related to cancer progress; 

3) High degree of appropriateness in regular and 

rescue analgesic prescription; 

4) Overall high satisfaction. 

This study had been supported by a grant of the 

MaratoTV3.Fundation. 



Place of Death of Cancer Patients in the 

Province of Salamanca 

Sánchez Dominguez F. 1 , Sánchez Chaves M.P. 1 , Gonzalez 







and December 31, 2007. 

Methods: To achieve this objective, an 

epidemiologic study, descriptive and ecological, of 

patients who died in the province of Salamanca 

during the period from January 1, 1998 and December 

31, 2007.Data are from death certificates, and are 

processed by the National Statistics Institute (INE) and 

the database University Hospital of Salamanca. For 

the years 1977-1998 we used the code of the 

International Classification of Diseases, Ninth 

Revision (ICD-9), and for the years 1999-2007 the 

equivalence of ICD-10. Were collected: cause of death, 

age, year of death and sex, and patients who died in 

hospital, the admitting service. 

Results: Of the 10,347 patients dying from cancer in 

the province of Salamanca, died in hospital 5868 

(56.5%), of which 3,767 were male (59.16%) and 

2,103 women (52.85%). For years, we see a steady 

increase of deaths in hospital with an increase of 

18.59% between the 1998-2002 and 2003-2007, in 

males, and 13.69% in the same period, women . 

Service was studied where the death occurred had the 

patients dying from lung cancer, breast or ovarian 

cancer, tend to die more often in the oncology 

department, patients with CNS tumors do in the care 

unit palliative hospital, patients with prostate cancer 

do so in the internal medicine, and patients with 

colorectal and gastric cancer die in the surgery 

department. When the results were analyzed by year 

of death was progressive increase in frequency to die 

in the hospital palliative care service. 

Conclusions: It is found that age and the possibility 

of active treatment which increases the chances of 

dying in an oncology service. As you age, and 

therefore decrease the chances of treatment, this 

mortality is moved to the internal medicine and 

palliative care hospital. 



Falls in Hospitals, the Reality of a Continuing 

Care Unit and Palliative Care - UCCP 

Aparicio M. 1,2 , Dias M. 1,2 




Introduction: The WHO believes that falls are a 

challenge to the quality of care, they are an important 

cause of human suffering and in some situations are 

avoidable, and may constitute a financial loss by 

creating more costs for organizations. There are 

inherent risk factors (age, multipatologia, therapy) 

and extrinsic factors (environment, footwear). 

Organizations are concerned with the registration of 

their indicators of quality of care and since June 2008 

is required to notify the falls as an adverse event in in 

the hospital where this research work is developed. 

After ascertaining that the number of falls in the 

UCCP is superior to other inpatient units in the same 

hospital, we believe it is important to conduct further 

203 


(Friday)


(Friday) 


study. 

Aims research: Assessing the impact of falls in 

UCCP during the period July 2008 to June 2010 (24 

months). 

Study design and methods: We retrospectively 

analyzed the number of falls, number of total number 

of occupied bed days in our unit, mean age, gender, 

associated risk factors, the degree of risk across the 

Morse Scale, among other indicators. 

Results: The number of falls occurred during this 

period was 4.8 falls per 1000 days of hospitalization 

(102 falls over 24 months) and in 6.2% had injury of 

falls with severity level 3. Patients had a mean age of 

73.2 years and an average of 21 days of 

hospitalization, there are more falls in males (64% 

men, 36% women), 67.6% were high risk and almost 

all these clients were medicated with more than four 

medications mostly benzodiazepines and opiates. 

Conclusion: The number of falls per inpatient days 

recorded are similar to the value that the Patient 

Safety Observatory refers in his report of 2007 (5% for 

wards and up to 18% in special units). However, more 

research must be done to prevent falls in the units of 

continuing care and palliative care, intervening in risk 

assessment and preventive measures. 



Cancer Patients´ Use of an Accident and 

Emergency Department: A Retrospective 

Survey of Casualty Cards 

Potter J. 1 , Saunders Y. 1 , Frame K. 2 

1 The Hillingdon Hospital NHS Trust, Department of 

Palliative Care, Uxbridge, United Kingdom, 2 Michael 

Sobell House, Northwood, United Kingdom 

Aims: Care of patients with cancer requires delivery 

of high quality services in different settings. Little is 

known about how cancer patients use Accident and 

Emergency services (A&E). This study aimed to 

ascertain how many, how often, when and why 

patients with a prior diagnosis of cancer attended an 

A&E department (A&E) of a District General Hospital 

(DGH) during January and February 2007. 

Design methods and statistics: The DGH’s 

electronic database (I-Reporter) was used to identify 

all patients with a prior diagnosis of cancer who 

attended A&E during a two month period. The 

database also provided the date of each attendance. 

Casualty cards (documenting each attendance) are 

filed in date order, and these were retrieved by hand. 

Data was collected using standardised proforma and 

analysed using Excel (2003). 

Results: 88 patients attended A&E 116 times during 

the two month study period,20% of patients more 

than once. The median age of patients was 72 years 

(range 26-97). 51% were female. 81% of patients 

referred themselves, 64% attended during normal 

working hours and 48% used the ambulance service. 

Data regarding patients’ type of cancer was missing in 

28% of cases, but on casenote review it was clear that 

patients attended A&E for reasons directly related to 

their cancer in 66% of episodes. The most common 

reasons for repeat attendances were urinary problems, 

falls and pain.116 A&E attendances resulted in 46 

admissions (40%). Two patients died in A&E. 

Conclusions: 88 patients attended A&E over the 

study period, one fifth more than once. Most referred 

themselves and attended during working hours. In 

over a quarter of cases little was documented about 

these patients’ cancers although it was commonest 

cause of attendance, and for many led to hospital 

admission. Despite efforts to plan care for patients 

with cancer this study shows that some patients are 

still resorting to independently accessing A&E for 

care, where initially their cancer diagnosis is not 

always known. 



Lung Cancer Mortality in Salamanca during 

the Period 1998-2007 

Sánchez F. 1 , Sánchez M.P. 1 , Gonzalez M. 1 , Sánchez N. 1 , 



Objective: The aim of this paper is to analyze 

mortality from lung cancer in the province of 

Salamanca during the period from January 1, 1998, 

and December 31, 2007, although a review of 

mortality trends the last three decades, then compare 

the results with the events in Spain and Europe in the 

same period. With this, we try to provide a better 

understanding of trends over the last ten years, of 

patients who die from cancer in our province. 

Methods: We performed an epidemiological study, 

descriptive and ecological, of patients who died in the 

province of Salamanca during the period from 

January 1, 1998 and December 31, 2007. Data on the 

total number of people who died in Salamanca on 

cancer disease between January 1, 1998 and 

December 31, 2007, including leading cause of death, 

age, year of death and sex were obtained from 

National Statistics Institute (INE). These data are based 

on official death certificates. We analyzed ageadjusted 

rates to the European population and 

truncated rates (35-65 years), separated into two fiveyear 

periods, 1998-2002 and 2003-2007, we analyzed 

the difference between five-year periods and the% 

growth. 

Results: There is a decrease, both sexes and globally, 

in Salamanca (-13.55% in men, -9.03% in women and 

-13.08% global). By studying the truncated rates (35- 

65 years), age-standardized way, we see that there is 

only a decrease, both sexes as globally, in Salamanca (- 

15.25% in men, and -5.92% in women and -14.08% 

globally). 

Conclusions: In our study, we show, in contrast to 

previous studies, a decrease in mortality rates from 

lung cancer, both overall and truncated, women in 

the province of Salamanca, with a decrease of 9% and 

5% respectively. 



The Prevalence of Depression in Portuguese 

Palliative Patients 

Julião M. 1,2 , Barbosa A. 1 


Centro de Bioética, Lisboa, Portugal, 2 Unidade de 

Cuidados Paliativos S. Bento Menni, IIHSCJ - Casa de 

Saúde da Idanha, Idanha, Belas, Portugal 

Background: Prevalence rates of depression have 

been reported in a variety of studies assessing cancer 

and non-cancer patients. 

Objective: The aim of this study was to study the 

prevalence of depression in a Portuguese palliative 

care unit. 

Study design and methods: This is an 

observational study. Inclusion criteria: patient 

enrolled in the palliative care unit (inpatient or 

outpatient); age≥ 18 years old; absence of delirium or 

dementia; life expectancy< 6 months and mini 

mental state> 20. Each eligible patient was asked to 

complete HADS questionnaire, after written consent 

was obtained. An evaluation using the Mini 

International Neuropsychiatric Interview (MINI) was 

also made in order to be used as the gold-standard 

comparison with HADS. Demographic information, 

current treatment (palliative or other), psychiatric 

history (depression, anxiety or other illnesses), use of 

antidepressants/anxiolytics were obtained from 

medical record. A total of 20 patients completed the 


Results: The prevalence of depression (HADS versus 

MINI) was 52.6%. No significant differences were 

found regarding sex, age and treatment subgroup 

analysis. 

Conclusion: This preliminary study found a higher 

rate of depression compared with the published 

literature. A simple screening tool as HADS should be 

introduced in the daily palliative care practice to 

identify these patients and start the correct treatment, 

providing the appropriate holistic approach. 



Characteristics and Survival of Patients in a 

Palliative Care Unit According to Origin 

Díaz-Albo E. 1 , Cabrera M. 1 , Sastre P. 1 , Mantilla A. 1 , Joao- 

Lobao M. 1 , Díaz-Albo B. 1 

1San Camilo Centro Asistencial, Tres Cantos, Madrid, 


Background: Palliative Care Unit (PCU) takes care 

of advanced cancer patients mainly, discharged from 

different Services of a General Hospital as well as 

Primary Care outpatients. Criteria to refer these 

patients may differ according to origin and may 

influence the expected survival. 

Objectives: To know the origin of those patients 

referred to a PCU. To know if origin of those patients 

modify prognosis. 

Methods: Retrospective study of patients treated at 

PCU. Variables: characteristic of patients (sex, age), 

origin (Hospital vs Primary Care) and survival. 

Results: Data are available on origin and overall 

survival (until death) of 335 patients assited in the 

PCU from 01/01/2009 to 31/12/2009. Characteristics: 

50.1% male / 49.9% female, median age 77.13 years 

(range 31-100 years); Primary Care 7.9% 

(n=60)/Hospital 82.1% (n=275) (Emegency Room : 

13.5%, Surgery: 0.9%, Internal Medicine: 23.3%, 

Oncology: 13.5%). Global median survival (days) was 

31,82. Median survival was inferior for patients 

coming from Primary Care (16,20), compered with 

Hospital (22,60); (p=0,0001). 

Conclusion: Origin of patients of a CPU is associated 

with different survival. Overall survival decreases in 

patients coming from Primary Care. 



Late Recovery from Vegetative State: A 


Kuehlmeyer K. 1 , Borasio G.D. 2 , Jox R.J. 1 





Aims: Palliative care clinicians are involved in 

decision making for patients in the permanent 

vegetative state (PVS). The prognosis concerning 

recovery from this condition is essential but evidencebased 

guidelines are challenged by anecdotal reports 

on late recovery from PVS. We review the scientific 

reports on cases of late recovery from PVS, describe 

how recovery is explained and what its outcomes are. 

Methods: A Pubmed literature search was conducted 

(search terms: “recovery” AND “vegetative 

state”/“minimally conscious state”/“chronic 

disorders of consciousness”). In the analysis we 

included all articles about recovery later than three 

months after non-traumatic brain injury and later 

than 12 months after traumatic brain injury (criterion 

for permanency according to the Multi-Society Task 

Force on PVS). The published diagnoses were reevaluated 

and the outcome was classified according to 

the Glasgow outcome scale by two independent 

reviewers. 

Results: We found 30 cases matching our inclusion 

criteria. Over the last 45 years, 22 cases of late recovery 

from PVS were reported. In eight cases the patient can 

retrospectively be diagnosed as being in a minimally 

conscious state (MCS). Late recovery from PVS was 

not reported later than three years after brain injury. 

The improvement was explained by pharmacological 

interventions, rehabilitation care, a former 

misdiagnosis, favourable prognostic factors, or merely 

by an atypical course of the disease. 

Conclusion: The reliability of prognosis is crucial 

when considering withdrawal of life-sustaining 

treatment in VS patients. Late recovery from VS is 

possible, but extremely rarely reported in the 

scientific literature without a report of recovery after 

three years. We suggest a standard for reporting such 

cases, discuss the pros and cons of a disease registry 

and highlight the implications for palliative care 

clinicians. 



Cornea Donation from Patients Deceased at a 

Palliative Care Unit 

Stiel S. 1,2 , Hermel M. 2 , Radbruch L. 3,4 


Medicine, Aachen, Germany, 2 RWTH Aachen 

University, Department of Ophthalmology and 

Aachen Cornea Bank, Aachen, Germany, 3 University 

Hospital Bonn, Department of Palliative Medicine, 

Bonn, Germany, 4 Malteser Hospital Bonn/ Rhein- 

Sieg, Palliative Care Centre, Bonn, Germany 

The introduction of the German Transplantation Law 

from 1997 commits medical care units to support 

organ and tissue donation and to report potential 

organ and tissue donators to local representatives and 

check inclusion criteria and contra indications before 

gaining consent for explantation. Therefore, 

caregivers in PC are invited to establish collaborations 

with eye banks to support cornea donation. 

This analysis assesses the absolute numbers of 

deceased patients, the relative rate of potential and 

actual donators from the PCU. These data are 

compared to other departments and the total number 

of deceased patients from the University Hospital for 

the years from 2003 to 2009. 


Between 2003 and 2009 a total of 704 patients died in 

the PCU. Of these patients, 229 (32,5% of all deaths) 

were scanned positively for a potential cornea 

donation and at least for 112 (48,9% of potential 

donors) of these potential donors a relatives’ consent 

for cornea explantation could be obtained.These data 

from the PCU are comparable to the overall sample of 

deceased patients of the university hospital, where 

similar rates of potential (24,6%) and actual cornea 

donors (44,9%) were reported. 

Data clearly show that a considerable percentage of 

PC patients were able to donate corneas; however, 

organ and tissue donation is not a familiar topic in PC 

and may even lead to controversial discussions. 

Relatives of deceased PC patients did not seem to find 

this problematic, as demonstrated by similar rates of 

cornea donators in the PCU compared to other 

departments of the University Hospital.In 2008 a 

specific communication training by PC specialists was 

implemented for ophthalmic physicians who acquire 

the relatives’ consent and was intended to transfer PC 

expertise to another medical discipline and improve 

the quality of telephone calls, to reduce the burden for 

all involved persons and to increase success in 

obtaining consent.This research received no funding. 



The Importance of the Bioethical for the 

Quality of the Treatment of Palliative 

Patients 

Pinto C.S. 1 , Naylor C. 2 , Reis T.C. 2 


Rio de Janeiro, Brazil, 2 National Cancer Institute of 

Brazil, Rio de Janeiro, Brazil 


the unit of the Palliative Care of the National Institute 

of Cancer in Brazil. The Bioethical sessions moderated 

by the president of the bioethical council started in 

October 2002. At the beginning, the sessions occurred 

to solve some situation indicated as imperious by the 

team. After that we felt the need to make regular 

meetings to increase awareness and the knowledge of 

the team. The aim of this work is to introduce the 

creation of the regular sessions of the Bioethical in our 

unit to improvement of the quality of the servicing of 

the patients. 

Material and methods: Were studied all the 

sessions that ocurred since its creation in 2002 (n=60). 

Results: The average was about 6,6 sessions by year. 

The main prevailing themes were: Autonomy 26.7% 

(n=16); Bad News Communication 20% (n=12); 

Justice 16,7% (n=10); Dysthanasia 13,3% (n=8) and 

Therapeutic Futilities 11,7% (n=7). When we 

evaluated also the secondary issues, we realized that 

while not appearing so often, other relevant issues 

were also addressed during these nine years of work. 

Among these themes we can highlight: Maleficence, 

Euthanasia, Beneficence, Caregiver Issues, 

Paternalism, Suicide, Sacredness of Life, Protection 

and Team Wear. 

Conclusions: The sessions were fruitful and in 2006 

the Bioethical journey were initiated, once every two 

years and where the following subjects were boarded: 

the Non Resurrection and the Therapeutic Futilities. 

In 2006, we established the group of bioethical of the 

HCIV, formed by 4 professionals who turned into 

specialists over the subjects and today advise at 

choose and presentation of cases. Currently, the 

meeting occurs once a month, interdisciplinary and 

all the professionals that wish to attend the meeting 

are released from their care activities. With the 

possibility of discussing over a forum, increasing the 

security of the team, we observe an improvement of 

the quality of servicing of our patients from palliative 




Advance Care Planning: Reconsidering the 

Foundation of Individual Autonomy 

Robinson C.A. 1 

1 University of British Columbia Okanagan, School of 

Nursing, Kelowna, BC, Canada 

Research aims: This interpretive descriptive study 

was designed to evaluate the applicability and 

usefulness of a promising patient centered advance 

care planning (ACP) intervention. 

Study design and methods: The intervention was 

conducted with persons who were newly diagnosed 

with advanced lung cancer and a significant other 

who was influential in health care decision making. 

Nine family dyads participated (18 participants; 15 

conjoint interviews). Evaluation interviews occurred 3 

and 6 months after the intervention. The participants 

were asked about their experience of the intervention, 

and its impact on their thinking, conversations, and 

relationships. All the interviews, including the 

intervention, were audio-recorded and transcribed 

verbatim. The accounts were analyzed using the 

constant comparison method. 

Results: All dyads completed the advance care 

planning process. Although the conversations were 

difficult, the families appreciated the opportunity to 

engage in these important and intimate discussions 

and evaluated the intervention positively. While the 

researcher structured the topics of the ACP discussion, 

the family led the interactional process. The process 

that unfolded during the ACP intervention was 

deeply relational and was characterized by mutuality, 

interdependence, and shared decision making. 

Conclusions: The ethical foundation of ACP has 

been solidly rooted in individual autonomy and 

patient self-determination. However, the concept of 

individual autonomy is contested, and there have 

been many theoretical critiques as well as 

acknowledgement of the importance of family in all 

aspects of end-of-life care. Yet, the orientation to 

individual autonomy remains, which invites clinical 

tension about the appropriate role of family in ACP 

related to the notion of avoiding “undue influence.” 

The findings of this study support the adoption of a 

re-visioned ethical stance encompassing a relational 

approach to autonomy. 


Withdrawn 



Palliative Sedation in a University Hospital: 

Application of a Protocol Assisted by a 

Palliative Care Support Team 

Boceta Osuna J. 1 , Nabal Vicuña M. 2 , Martinez Peñalver 

F. 1 , Blanco Picabia A. 3 , Aguayo Canela D.M. 1 , Royo 

Aguado J.L. 1 

1 University Hospital Virgen Macarena, Internal 

Medicine, Seville, Spain, 2 University Hospital Arnau 

de Vilanova, Internal Medicine, Lérida, Spain, 

3 University Hospital Virgen Macarena, Psichiatry, 

Seville, Spain 

Introduction: Our objectives are to analyze data 

from inpatients under Palliative Sedation (PS) at our 

University Hospital in one year, not in a Palliative 

Care (PC) Unit, according to our centre´s PS protocol, 

with the intervention of a PC Support Team, and to 

detect possible abusive, non-indicated or suboptimal 

use of PS as defined in the European Association of 

Palliative Care Framework Document. 

Methods: A descriptive prospective study was carried 

out in patients attended in one year by the PC Support 

Team, between March 2008 and February 2009 

fulfilling the inclusion criteria established by the 

Andalusian PC Integrated Assistance Process, using 

assessment tools and common PC classifications and 

SPSS 14.0. A PS Protocol was previously approved by 

our Etical Committee, and it was applied when 

refractory symptoms appeared. In oncological 

patients, terminal phase (last days situation) was 

detected by Menten criteria. 

Results: From the 325 patients treated by the PC 

Support Team, PS was administered following our 

hospital protocol in 27.6% (N=90). Five PS 

consultations were studied by the Assistance Ethics 

Subcomission. 

Main reasons for sedation (more than one each) were 

dyspnea (75.5%), delirium (47.7%) and refractory 

distress (31.1%). The depth of sedation was registered 

in 80 cases (88.8%) being superficial (Ramsay I-III) in 

37.5% (N=30) and deep (Ramsay IV-VI) in 62.5% 

(N=50). When PS was applied in the terminal phase 

(49.5%), average duration was 37.1h, and it was 230 h 

in the non lasts days situation patients under PS. 

Midazolam was the first choice in 87.8% of the cases. 

Conclusions: The establishment of a PS Protocol 

with assisted application of the PC Support Team and 

the easy access to consultation with the Assistance 

Ethics Subcomission, enabled the application of PC in 

those patients admitted to other Units rather than PC 

Unit who required it, and avoided an incorrect use. 





End of Life Decisions (EOLD): Defining the 

Most Important from a Group of Experts in 


De Simone G. 1,2 , Manzini J. 1 , Tinant E. 1 , Tripodoro V. 1,2 , 

Grance G. 1,2 , Rabadán A. 1 , Gherardi C. 1 , Maglio I. 1 , Sluzky 

L. 1 , Ceschi R. 1 , Estévez A. 1 , López H. 1 , Butera J. 1 , Henry 

E. 1 , Miranda A. 1 , Löbbe V. 1 , Cullen C. 1 , Salgueiro S. 1,2 , 

Martí M. 1 

1Academia Nacional de Medicina, Consejo Académico 

de Etica en Medicina, Buenos Aires, Argentina, 

2Asociación Pallium Latinoamérica, Buenos Aires, 


Aim: The working group on EOLD was created in the 

Council of Medical Ethics - National Academy of 

Medicine in Buenos Aires, in order to promote 

education and advice to Argentinean physicians in 

relation with ethical concerns about EOL care in daily 

practice. First aim was to focus on main EOLD. 

Method: Once EOLD was defined thorough a Delphi 

process, we developed a survey on main EOLD 

reported by experts from different professions, 

making a list of those more frequently considered to 

be important. 19 experts were invited, all of them 

accepted to participate in the Delphi and/or survey. 

EOLD were defined as “those that involved a person 

whose vital functions are seriously compromised, and 

they affect (or may affect) personal dignity and 

integrity, as well as they have an impact on quality, 

place or time of dying”. 

Outcome: A total of 90 EOLD were mentioned and 

they were classified in 12 categories, following the 

criteria of OPCARE9 international project which 

includes experts from 7 countries in Europe and 2 

beyond. These categories are: withholding/refusal 

therapy (includes hydration); place of dying, 

symptom control, communication, social matters, 

organization of care, autonomy, other interventions, 

spirituality, after death, euthanasia and 

miscellaneous. When comparing six most frequent 

categories among the Argentinenan group with those 

of OPCARE9, we find that even when most of the 

decisions are similar they are ranked differently: 

withholding/refusal therapy 1st (Argentinean) and 1st 

(OPCARE), Autonomy 2nd / 7th; organization of care 

3rd / 6th; communication 4th / 4th ; place of dying 

5th / 2nd; symptom control 6th / 3rd. We suggest that 

factors like culture, medical education and resource 

availability could explain differences in priorities 

among this Argentinean perspective and other 

international perspectives like OPCARE9 project. We 

consider this survey is relevant as a base to promote 

proper education and research based on own needs 

on EOLD in the country. 



Relational Ethics and Palliative Care 

Barbosa A. 1 



Common ethical principles (beneficence, autonomy, 

justice, vulnerability, dignity, responsibility) are 

referential tools on clinical decision making. 

However, in end-of-life ethics we feel the need to 

construct a more clinical model: relational ethics. Its 

main references come from a dialogical, 

hermeneutical and pragmatic ethics based on an 

intersubjectivity perspective of human development 

which can deal with the practical rationality in 

clinical practice faced with complex but concrete 

situations. It recognizes three main focus: 

interpersonal and intrapsychic conditions of 

authenticity, a process of mutual reciprocity in order 

to allow personal growth. 

It is from the observation that the clinic relationship 

creates, in a space and a time, conditions for the 

emergence of experiential values of the patient and of 

the professionals through which you can build a 

relationship of trust (and not through a process 

merely procedural), that other ethical questionings 

emerged in this problematization area (ethics of care, 

hermeneutics, narrative ethics, responsibility ethics). 

The fundamental aspect of this new perspective is a 

shift from a point of view where the autonomy 

dominated to just be centred on problems of the 

limitation of such autonomy before losses, risks and 

threats to the integrity and dignity of the human 

being, introducing the vulnerability as a core of the 

ethical questioning, as a priority principle over other 

principles with its correlated dimension of 

205 


(Friday)


(Friday) 


responsibility. 

We describe the way this theoretical and deliberative 

proposition can be easily applied to end-of-life 

decisions exemplified with a particular case of a 

woman admitted to a medicine department of a 

general hospital. 



Discovering the Advantages and Tensions of 

Being a Palliative Care Physician and 

Researching End of Life Issues 

Swarbrick P.M. 1 , Grinyer A.E. 1 , Payne S. 1 



Aims: This paper discusses the positive and negative 

aspects of conducting qualitative, interview-based 

research for clinically trained personnel. 

Methods: A reflexive account is given of the process 

of becoming a researcher in end of life issues, for a 

physician trained in palliative medicine. The author 

describes the advantages and tensions inherent in 

conducting qualitative, in-depth interviews for 

research purposes whilst drawing on previous training 

in communication skills and consultation 

experiences. Comparisons and contrasts are drawn 

between the communication skills required of the 

clinician and of the researcher using interviews, and 

between the research interview and the clinical 

consultation. Observations are related to the findings 

of the small body of literature pertinent to the issue of 

the dual roles of clinician and researcher. 

Results: Clinicians, and particularly specialists in 

palliative care, may feel confident setting out to 

conduct interview-based research when armed with 

years of consultation skills practice. There are, 

however, potential tensions at every point of this type 

of research for clinicians. A concientious, reflexive 

and ethical approach to these tensions can place an 

extra demand on the clinical researcher, which could 

be potentially both time-consuming and emotionally 

draining. 

Conclusion: It is suggested that it is beneficial for 

clinically trained researchers to be aware of both the 

advantages and disadvantages of their training. 

Having deeply ingrained clinical competencies and 

philosophies potentially alters the research interview 

data, as can any other personal quality of the 

researcher. Data should be contextualized by these 

factors as much as possible throughout the research 

process, from inception and creation of research 

proposals, through to analysis and findings. In this 

way, the wider effects of a clinician conducting 

research can be both utilized for their advantages and 

also countered for any disadvantages. 



Euthanasia and Physician-assisted Suicide in 

Medical Students Views: A Comparison of Two 

Polish Medical Universities 

Leppert W. 1 , Gottwald L. 2 , Kazmierczak-Lukaszewicz S. 2 , 

Cialkowska-Rysz A. 2 

1 Poznan University of Medical Sciences, Chair and 

Department of Palliative Medicine, Poznan, Poland, 

2 Medical University of Lodz, Palliative Medicine 

Laboratory, Lodz, Poland 

Background: Ethical problems in the care for 

patients with advanced diseases are important issues. 

The aim of the study was the recognition of 

euthanasia and physician assisted suicide (PAS) 

definition, declared euthanasia practice and support 

for its legalization among medicine students at two 

Polish medical universities. 

Material and methods: Questionnaire survey of 

588 medical students: 353 (187 of the fifth and 166 of 

the sixth year) of Poznan and 235 of the sixth year of 

Lodz Medical Universities upon completion of 

obligatory palliative medicine classes. Students were 

provided with basic knowledge on symptom 

management, psychological, social, spiritual support 

and basic ethics. 

Results: From the surveyed 577 (98.57%) 

respondents provided their religion; there were 492 

(83.67%) catholic and 87 (14.80%) atheists. Both 

euthanasia and PAS definitions were recognized by 

468 (79.59%), one by 84 (14.29%), no one by 36 

(6.12%) respondents. Euthanasia or PAS would 

practice 69 (11.73%), would not practice 303 

(51.53%), don’t know 216 (36.73%) students; 

differences between universities significant (p < 

0.001). Support for euthanasia or PAS legalization was 

expressed by 174 (29.59%), objection by 277 

(47.11%), don’t know 137 (23.30%) students; 

differences between universities not significant (p = 

0.1). In both questions gender and religion had 

influenced the answers but place of living had not. 

The palliative medicine courses did not influence 

medical students´ attitude towards euthanasia and 

PAS. 

Conclusions: Most students were in opposition to 

euthanasia practice; more but still minority supported 

euthanasia legalization. A significant percentage of 

respondents could not answer the questions. 



What Are the Knowledges and Attitudes of 

Medical Staff in my Environment towards 

Advance Directives (AD)? 

Oliete E. 1 , Pons O. 2 , Mancheño A. 1 , Martín S. 1 , Ruiz P. 1 , 

Soriano V. 1 

1 Instituto Valenciano de Oncología, Unidad de 

Hospitalización Domiciliaria, Valencia, Spain, 2 La Fé, 

Radioterapia, Valencia, Spain 

Aims: We would like to explore the knowledge and 

attitudes of physicians of our environment towards 

advance directives. 

Methods: We performed a descriptive cross-sectional 

study by means of a self-administered, validated in 

other studies,16 item questionnaire carried out in our 

environment.A total of 107 physicians were 

interviewed.The first section contained questions of 

their knowledge about the legal form of AD and the 

other section revealed their attitudes and their 

willingness to write their own AD.In addition, were 

collected demographic data and area of current 

employment.The data gathered were analyzed using 

the software package SPSS 15.0 statistical programme 

for Windows. 

Results: Mean age (standard deviation)is 

36.58±8.7;38.9% of participants were men and 61.1% 

were women.Just 13% had at least part-time 

experience with palliative care patients.The 

physicians surveyed scored their knowledge with a 

mean of 4.18 although the 93.5% believes that it is 

duty of healthcare personnel know the scope of the 

AD.Only 59.3% knew about the legislation on AD.The 

doctors believed that planning and writing down 

one’s wishes about the care to be received was 

advisable(mean 8.64),our colleagues considered ADs 

to be a useful tool for health professionals(mean 8.42) 

and for relatives (mean 8.33).The medical staff 

surveyed would like to register their own AD (mean 

8.35),but they express with 5.23 an intention of 

concerning themselves in the next year with the 

subject of advance directives.They believe that,the 

weight information should lie on primary care 

professionals,and this should be directed to the whole 

population. 

Conclusion: The personal surveyed have a positive 

attitude towards AD for patients’ relatives and for 

healthcare professionals.They show a high 

predisposition to registry their advance directives, but 

lower to do so immediately.Efforts to strengthen this 

instrument should be welcomed and efforts must be 

done to improve the knowledge of the physicians. 



Patients Rights and End of Life: A 

Comparative Approach France-Israël 

Lévy-Soussan M.M. 1 , Azoulay D. 2 

1 Hopital Pitié Salpétrière, Palliative Care, Paris, France, 

2 Hadassah Medical Organization, Center for 

Supportive Care, Jerusalem, Israel 

Demographic and economical realities, along with 

medico-technical development constitute a common 

background for contemporary challenges of health 

system in several countries. Studying inter-country 

similarities and differences allow to get a new insight 

as well as prospective views on weakness and strength 

of patients rights in specific contexts. France and 

Israël adopted five years ago new laws on patients 

rights, especially with regards to end of life decisions. 

Analyzing the situation five years later allow to point 

out some needs and necessities still to satisfy: 

A better knowledge and understanding of the law by 

citizens and health professionals, especially with 

regards to advance directives, role of surrogates, and 

collegiality in making some medical decisions. 

Adjustment of standard reimbursement schedules by 

managed care organizations to the complex realm of 


Integration of the palliative approach within the 

practice of health professionals, including the place of 

palliative medicine in the medical schools 

curriculum, and participation of palliative 

professionals to continual training and adjustment of 

care providers. 

The ethical questions raised by the various practices 

and the implementation of laws depend on the sociocultural 

and religious contexts: value given to 

autonomy of the patient, life, survival, role of next of 

kin… These explicit or implicit values, mobilized by 

individuals and the society bear a determinant role in 

decision making process, and allow to differentiate 

reasonable medical intervention from futility, taking 

into account the distinction made by the israélian law 

between withholding (allowed) and withdrawing 

(still forbidden) treatments. 



Death at Home: The Social, Ethical and Legal 

de Oliveira T.C. 1 , de Souza A.N.L. 1 , Chaves A.R.D.M. 1 



Objective: This study aims is to present the 

socioeconomic profile of patients treated in the 

palliative care unit, who died at home and the reflect 

on the state´s role in serving citizens that choose to 

die at home. 

Method: We used qualitative and quantitative 

approaches and instruments such as documentary 

analysis and database of the institution. The study 

allowed the analysis of the social profile, a survey of 

institutions that relatives appealed at the time of 

death and the different forms of care in the 

municipalities. The profile was raised from all patients 

enrolled who died at home from january to june 

2010, total 796 deaths, 136 died at home. 

Results: The institution through internal 

standardization assists patients who die at home. Die 

at home is an option of the patient and his family. 

The Cancer Hospital provides death certificates due to 

absence of public policy at different levels of 

government that the families meets properly at the 

time of death. The State participation is realized 

through the institutions of security and / or through 

the intervention of representatives of local 

government in a welfare perspective. 

Conclusion: Death at home constitutes a major 

challenge for government levels, while Brazilian State 

should ensure citizens´ rights even at the time of the 

end of life care that may include the choice of dying at 

home surrounded by the comfort and dignity of the 

social network and family. Therefore, it is essential to 

reflect on the government duty, advancing the 

discussion on their ethical and legal aspects to ensure 

a good death for patients with advanced cancer and 

care of bereaved families. 

Parte superior do formulário 



Beyond Advance Directives: Towards 

Dialogical Advance Care Planning in Geriatric 


Hertogh C.M. 1 

1 VU University Medical Center, EMGO+ Institute, 


Introduced in the 1970’s and morally funded in the 

concept of precedent autonomy, advance directives 

(AD) were intended to govern treatment outcomes in 

the event of decisional incapacity. From the 

perspective of older people, they were welcomed as an 

instrument to support autonomy at the end of life 

and to offer a solution to the despised perspective of 

lingering on in old age and being victim to 

burdensome medical interventions in the event of 

incapacity. However, the initial enthusiasm for AD 

was soon tempered, because with experience came 

awareness of the (implementation)problems and 

since the early 1990´s a plethora of critical reviews 

and research studies has been published. The bottom 

line of these studies (predominantly performed in the 

USA, but also in the Netherlands where legal rules 

regarding AD were issued soon after and in 

accordance with their legal status in US federal law) 

seems to be that, in general, AD do not have a relevant 

influence on end of life care and decision making and 

that they sometimes create more ethical conflict than 


they pretend to resolve. The reasons for this failure are 

multiple, but an important factor is the 

predominance given to the concept of precedent 

autonomy in medical ethics. More specifically, what 

we have learned from the experience of aging and 

chronic disease is, that our anticipatory beliefs (as an 

expression of precedent autonomy) often fail to 

recognise our ability to adapt. As a rule of thumb: as 

long as our health is stable, so are our preferences. But 

with unstable health also our preferences change, 

giving rise to often impressive response shifts. These 

findings call for an alternative approach to planning 

in advance. Instead of stimulating patients to 

complete AD, health care professionals should engage 

in advance care planning as a ongoing dialogical 

process of supporting patients and their proxies to 

(regularly) (re)assess goals of care as they confront the 

challenge of a progessive illness trajectory. 



The Cinema in the Teaching of Bioethics and 

End-of-Life Care 

Manalo M.F.C. 1,2 

1 Far Eastern University-Nicanor Reyes Medical 

Foundation, Hospice & Palliative Care Service, 

Department of Community & Family Medicine, 

Quezon City, Philippines, 2 The Medical City, 

Palliative Care Unit, Cancer Center, Pasig City, 

Philippines 

Aim: The cinema feeds on stories, where the patient 

and his/her ailment play a role because illness seems 

to burst in unexpectedly, changing the course of one’s 

life. The cinema, with its powerful influence on 

intellect and the senses, is an important teaching 

instrument for helping students have a better 

understanding of the sick. It is the aim of this study to 

use film to create a framework of useful dialogues for 

generating positive attitudes regarding the care of 

terminally-ill patients, while facilitating the 

acquirement of skills that allow medical students to 

offer ethical responses to the concern and dilemmas 

encountered in end-of-life care. 

Design & method: After a series of lectures dealing 

with confidentiality, truth-telling & disclosure, and 

informed consent, the movie “Wit” was screened by 

first year medical students. The film is about a patient 

with advanced ovarian cancer with generalized 

metastasis who is subjected to aggressive treatment, 

but with little involvement of the health workers in 

matters beyond her disease, with the exception of one 

of the nurses. After the film-showing, participants 

were then asked to reflect on what they had learned in 

terms of ethics of death and dying, and end-of life care 

of advanced cancer patients. 

Results: After seeing a film that showed the lack of 

full disclosure and advance directive discussions by 

the hospital staff to a patient, failing to seek informed 

consent for tests and experimental treatment, and 

lack of empathy in breaking the bad news and 

compassion for the suffering experienced by a patient, 

medical students admitted to having a greater 

sensitivity to disease, loneliness, palliative care and 

bioethical issues related to death and dying. 

Conclusion: The cinema is an important tool for 

bioethics education to learn correct and appropriate 

attitudes in the care for the sick. The movie “Wit” is 

an effective and entertaining method of teaching 

students the bioethics of death and dying and 




Attitudes and Opinions toward Euthanasia 

and Assisted Suicide among General 

Practitioners in Badajoz (Spain) 

Cuervo Pinna M.Á. 1 , Ramos Jiménez M.A. 2 

1 SES, Palliative Care Support Team, Badajoz, Spain, 

2 SES, Badajoz, Spain 

Aims: To determine the attitude and opinions of 

General Practitioners (GP) toward Euthanasia (E) and 

Assisted Suicide (AS). 

Methods: This study used a survey of 162 GPs by 

postal means. A questionnaire was developed, 

partially based on other published and validated 

papers. The questionnaires were sent by mail to the 

total of Health Care Centers in Badajoz (242000 hab.). 

The GPs received the questionnaire with a letter 

explaining the reasons and the importance of the 

study and assuring the anonymity. The 

questionnaires contained questions concerning 

demographic data and different hypothetical 

scenarios concerning E and AS. The variables were 

analyzed by graphical methods, proportions and 

means. The chi-square test was used wether to 

evaluate the association between categorical variables. 

The Stata9 software was carried out. 

Results: From the total of 162 questionnaires , 73 

(45%) were sent back filled in. Respondent were 

mainly male (60%), married (60%), with more than 

twenty years in the clinical practice(65%) and with 

some religious beliefs. The most common aetiologies 

identified to hasten death were: Unbearable pain, feel 

such as a burden for relatives and fear about lose 

physical control. The maximum agreement was 

related to these statements: legalize E and AS would 

mean a poor development in palliative care(PC); 

increasing the analgesic doses rates in order to 

alleviate the suffering is a well-accepted medical 

practice even thought it could be accelerated the end 

of life. 

Conclusions: GPs rarely are asked to hasten death. 

The great majority of GPs consider suitable the 

increase of analgesic doses even if the end of life could 

be hastened. Legalize E would involve a poor 

development in PC. LET at the end of life is a constant 

feature. 



Hope in Palliative Care: Perspectives of Nurses 

and Doctors 

Olsman E. 1 , Leget C. 2 , Willems D. 3 

1 Academic Medical Center, University of Amsterdam, 

General Practice, Amsterdam, Netherlands, 

2 University of Tilburg, Tilburg, Netherlands, 

3 Academic Medical Center, University of Amsterdam, 


There is some anecdotal evidence that doctors and 

nurses have different perspectives on hope in 

palliative care. However, these perspectives have not 

been systematically investigated. Therefore, we will 

present how hope is interpreted by authors in the field 

of medicine and nursing sciences. 

Aiming to find articles from these disciplines, we 

selected the following databases: Medline, CINAHL, 

Embase and PsychINFO. We have searched for articles 

on hope (and related words) and articles on palliative 

care. We combined both searches and after that we 

selected articles that have been written from the 

perspective of doctors or nurses. 

One of our results is that hope from a doctor’s 

perspective is connected to professional medical 

standards which implies that physicians are obliged to 

give the patient information about diagnosis and 

prognosis, in order for the patient to make 

autonomous decisions about his future. The patient’s 

hope is true when it refers to the correct medical facts, 

or false when it deviates from medical reality. Authors 

in the field of nursing sciences, on the other hand, 

mainly concentrate on hope fostering strategies. In 

order to contribute to quality of life in palliative care, 

they try to describe effective hope fostering strategies 


In conclusion, doctors interpret hope in relation to 

their professional duty to represent medical facts, 

while nurses focus on hope fostering strategies, 

aiming to contribute to quality of life in palliative 

care. It is important to make explicit these differences 

because doctors and nurses may mean something else 

when they refer to hope. In addition, their 

interpretations of hope may carry different ethical 

implications. It is important for doctors and nurses to 

understand these differences because it improves their 

communication and as a consequence, it contributes 

to the quality of palliative care. 

Funding: ZonMw, the Netherlands Organization for 

Health Research and Development 



Palliative Care and the Pharmaceutical 

Industry - Is it All about the Money? 

Barnard A.J. 1 , Du Toit C. 2 


Town, South Africa, 2 Janssen Pharmaceutica, Medical 

Scientific Liason & Patient Advisory Service: PAIN, 

Johannesburg, South Africa 

The traditional relationship between the 

pharmaceutical industry and the medical profession 

has been fraught with challenges of patronage and 

this has possibly influenced research relationships 



and outcomes adversely. Though this is not always 

the case, healthy scepticism should prevail when 

evaluating and applying the results of researched 

funded by the industry. 

A new and exciting model of co-operation between 

the pharmaceutical industry and academic and 

clinical palliative care has developed. A pain advisory 

consultant has a mandate from the company to 

advise broadly and beyond the scope of remedies 

which that company supplies, with the goal of 

achieving better pain control, and reducing suffering 

as well as educating the medical fraternity about these 

aspects of care. 

The particular factors which have an influence on this 

process will be examined. The training, experience 

and expertise of the individuals involved will be 

described, as well as the motivation of the different 

parties to make the co-operation work. The 

relationship between the pain consultant and an 

academic palliative care practitioner will also be 

discussed, in terms of its motivation, effectiveness and 

transferability. 

This is a particularly important process to encourage 

and develop, especially in the palliative care field, 

because the vulnerability of the patients who are the 

end users of the pain relieving products to undue 

influence may be reduced if a rigorous academic 

process is interposed between the supplier and the 

user. The balance of clinical excellence, availability of 

all possible medications and other modalities of 

treatment to as wide a population as possible and 

benefit to the suppliers should be maintained and 

understood. 

This presentation will attempt to develop and 

facilitate the necessary dialogue between the 

pharmaceutical trade and palliative care providers 

from academic and clinical practice. 



Palliative Medicine - The Linkage of Ars 

Moriendi and Medical Ethics 

Brkljacic Zagrovic M. 1 , Cengic T. 2 

1 University of Rijeka, School of Medicine, Department 

of Social Sciences and Medical Humanities, Rijeka, 

Croatia, 2 University of Rijeka, School of Medicine, 

Rijeka, Croatia 

Palliative medicine and palliative care are a „new“ or 

we can better say „re -born“ branch of medicine 

dealing with optimal quality of life and death . An ars 

moriendi is needed in our societies in order to 

understand death and dying and accept the palliative 

care. Particularly important are the ethics of the 

palliative care, because they focus on aspects of the 

care aimed at the patient and critical decisionmaking. 

The decisions made in palliative medicine 

require moral, legal and medical judgements. At the 

same time, one must strike a balance between clinical 

aspects of the care and the patient´s autonomy 

regarding his wishes, beliefs, and finally decisions 

about his own medical treatment. Ethical aspects of 

decision-making cannot be separated from the 

clinical circumstances of an individual case, in the 

same way as medical decision-making cannot neglect 

the four (bio)ethical principles: beneficence, nonmaleficence, 

autonomy of the person, and justice. 



Caring for Children with Complex Needs - 

Exploring Mothers Reports of Care-giving at 

Home 

Nicholl H. 1 

1 Trinity Colleg Dublin, School of Nursing and 

Midwifery, Dublin, Ireland 

Background: Children with complex needs, 

including those requiring palliative care, are 

increasingly being cared for at home. 

Aim: The aim of the qualitative phenomenological 

study was to explore the experiences of mothers 

caring for their child with complex needs at home. 

Study design and methods: Heideggerian and 

Gadamerian approaches were used and data were 

collected seventeen mothers. Multiple interviews 

(n=48), and diary recordings (n=11 mothers), were 

analysed using an adaptation of a number of 

theoretical models. 

Results: The experiences of caring for a child with 

complex needs are framed by eight dimensions 

within three worlds or care-giving environments. 

These are an inside world of the home, an outside 

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world and a going-between world. Mothers were 

involved in care-giving which comprises of four 

components. These are - normal mothering, technical 

care-giving, pre-emptive care-giving and 

individualised care-giving. The remaining seven 

dimensions in the phenomenon of care-giving that 

emerged from the findings indicate that mothers’ 

experiences comprise paperwork and administration, 

constant observation, constant instability and 

constant communication. Additionally mothers´ 

‘knew´ of their child´s needs (‘knowingness’) while 

únknowingness´ in others, who do not fully 

understand the situation, impacted significantly on 

the mothers’ experiences throughout the child´s 

illness trajectory. The final dimension identified was 

that caring involved a ńo choice´ situation for all the 

mothers and this impacted on them and their caregiving 

responsibilities. 

Conclusions and recommendations: Service 

providers, nurses and policy makers need to fully 

understand the ongoing challenges faced by mothers 

when they deliver care to their children at home. The 

demands that care-giving places on mothers at home, 

and its consequences for them and family members, 

needs greater recognition within health and social 




Development and Testing of a Brief Psychoeducational 

Intervention for Informal 

Caregivers in Home Cancer Palliative Care 

Harding R. 1 , Epiphaniou E. 1 , Beynon T. 2 , George R. 2 , 

Robinson V. 2 , Higginson I. 3 , Tredinnick N. 2 , Pannell C. 3 

1 King’s College London, Dept. Palliative Care, Policy 

& Rehabilitation, London, United Kingdom, 2 Guy’s & 

St Thomas’ Hospital NHS Trust, London, United 



Background: Carers identify primary needs as 

information and support. Few interventions have 

been evaluated and palliative care suffers from few 

robust evaluations. Therefore, careful research-based 

approaches to development and piloting brief 

interventions are essential. 

Aims: To adapt, refine, develop and pilot a brief 

psycho-educational intervention. 

Method: 

Phase I: Modelling Intervention: semi-structured 

caregiver interviews to indentify needs, challenges, 

perceived support and views on the proposed 

intervention, content and format. 

Phase II: Pilot Intervention: two home visits 

supplemented by a follow-up phone call between the 

visits and materials. Data were collected:T1 baseline, 

T2 (3 weeks post intervention) and T3 bereavement (8 

weeks post-death). Carers completed questionnaires 

on burden, anxiety, competence, preparedness and 

rewards. Semi-structured interviews informed views 

on receipt of intervention in terms of acceptability 

and contents. 

Results: 

Phase I: among the 20 carers most were retired 

(N=10), female (N=11), mean age 55.5(SD=16.9). 

Carers revealed the need for visibility, illness 

specificity, preparation and emotional support. 

Multidisciplinary group meetings were held to 

develop and adapt the intervention following data 

from Phase 1. 

Phase II: most were retired (N=4), female (N=7), 

mean age 58 (SD = 16) currently caring for an average 

of 30 months. Preliminary results indicate worse 

rewards from caregiving, burden, mental health and 

anxiety at baseline. Most carers found the 

information included in the materials useful as they 

were relevant to their daily routines. The intervention 

was acceptable and all carers thought it was feasible 

and practical. Carers also highlighted the importance 

of having someone to ‘moan at’ and appreciated that 

the intervention met their need for visibility and 

preparation. 

Discussion: Our data support the argument that 

brief interventions are well received by informal 

carers. Final trial design is planned. CRUK the carers 

study. 



Piloting the Use of a Carer Support Needs 

Assessment Tool for Palliative Home Care: 

Using Audio Diaries to Understand the 

Challenges of Implementation in Practice 

Ewing G. 1 , Grande G. 2 , Booth G. 3 , Payne S. 4 , Todd C. 2 

1 University of Cambridge, Centre for Family Research, 

Cambridge, United Kingdom, 2 University of 

Manchester, Manchester, United Kingdom, 3 St Luke’s 

Hospice, Basildon, United Kingdom, 4 Lancaster 

University, Lancaster, United Kingdom 

Background: Family carers are crucial in enabling 

patients to be cared for at home towards the end of 

life. This can result in emotional, social, financial and 

physical costs for carers. UK government policy and 

guidelines stress carer needs should be assessed and 

addressed in end of life care (EOLC). We have 

developed an evidence-based Carer Support Needs 

Assessment Tool (CSNAT) to elicit and facilitate 

communication about carer needs. 

Aims: To pilot the implementation of the CSNAT 

and evaluate how well it integrates into routine EOLC 

practice. 

Methods: 

Setting and sample: One hospice at home (H@H) 

service in England with 40-50 referrals per month; 

patients referred a mean of 4-6 weeks before death. A 

volunteer group of nine H@H staff: six trained nurse 

co-ordinators, one RN providing respite at night and 

two health care assistants. 

Methodology: Practice tool comprises 14 CSNAT 

assessment items, prioritisation and action sections. 

Service components: induction and training for all 

staff, monitoring and review of service’s CSNAT use. 

Research components: focus groups with H@H 

volunteers on views and experiences of CSNAT use 

and reflective audio-diaries on exemplar cases. 

Results: Implementation is at mid-point, initial 

analysis ongoing. This has revealed the unique value 

of audio-diaries in capturing key data on the 

circumstances of implementation of the tool in 

practice: when it works well, challenges to be 

addressed, barriers to be overcome. These findings will 

be reported together with the methodology of 

evolving diary use. 

Conclusion: The use of audio-diaries is providing 

important insights into the challenges of 

implementing a tool for the assessment of carer 

support needs in EOLC. This understanding is vital 

not only for extending use of the tool more widely in 

practice, but also provides essential preparatory work 

for a future trial to test the effectiveness of the CSNAT 

in assessing carer needs and facilitating their support. 



Living with Breathlessness: The Experiences 

of Caregivers 

Malik F.A. 1 , Gysels M. 1 , Higginson I.J. 1 

1 Kings College London, Palliative Care, Policy & 


Background: Breathlessness is a common symptom 

in patients, but can affect their carers. Carers are 

crucial in patient support, but may have unmet needs. 

Little is known about how carers experience 

breathlessness, it’s impact on carer burden and 

differences between caring for someone with heart 

failure (HF) or lung cancer (LC). 

Aims: To describe and contrast experiences of caring 

for a breathless patient with LC or HF. To examine 

factors associated with caregiver burden. 

Methods: Cross-sectional survey of carers and 

patients with breathlessness. Participants recruited 

from two London hospitals. Inclusion criteria: 

Patients with breathlessness and their nominated 

carers. Descriptive analysis used to examine 

differences and similarities between HF and LC carers. 

Multiple regression analysis used to identify factors 

associated with caregiver burden. 

Results: 51 HF and 50 LC carers recruited (93 

pt/career dyads). Most carers were spouses (72%) and 

female (80%). Severity of patient breathlessness was 

the same across both CG groups, mean Borg = 3 

(moderate). Carer concerns were similar across 

conditions. Most carers reported severe sleep 

disturbances (nearly 70% in both groups). Nearly 20% 

of HF & 30% of LC carers reported ‘severe’ burden. LC 

carers were more concerned about time wasted on 

health appointments (Z=-2.5, p=0.01) & used denial 

more frequently than HF carers. HF carers were more 

likely to look after patients without help (c 2 =5.59, 

p=0.02). Burden was best predicted by poor quality of 

care & poor carer psychological health (R 2 =0.36, 

F=11.95, p< 0.0005). Higher levels of breathlessness 

were associated with less positive caring experiences 

(r=-0.35, p=0.01). 

Conclusions: HF carers have as much need for 

palliative care as LC carers. To improve career burden, 

interventions should focus on streamlining services to 

minimize time wasted, address practical needs, 

promote positive aspects of caring, improve coping 

skills and address sleep disturbance. 



The Needs of Family Caregivers of Children 

with Poor Prognosis Disease 

Ramos S.B. 1 

1 Centro Hospitalar de Lisboa Central - Hospital de D. 

Estefânia, Lisboa, Portugal 

The news of a bad prognostic disease in the child is 

undoubtedly one of the most dramatic situations in 

the life of a family, because a serious disease is for all 

its members a painful surprise, a hard blow to endure 

that can test the values in which the family is based, 

the solidity of the affective ties among its members, 

the union and the solidarity among all of them. It’s in 

this context of intense suffering, that the role of the 

paediatric palliative cares shows a great importance, 

because they have a supreme role in the attendance of 

these children and families. 

Facing this set of problems and acknowledging that 

taking care of a child, suffering from a serious disease 

implies to know the needs of how to support the 

family carers, we have formulated some questions. 

We have built up a study in which we have tried to 

analyse the life experiences and to identify the needs 

of supporting these family carers, as well as to identify 

the developed strategies in this process to face the 

situation. 

Considering the goals of this study and according to 

the equated set of problems, we have made a 

qualitative study, following the method of the 

grounded theory. 

A paediatric hospital in Lisbon allowed us to talk to 

the nine family carers who composed our sample. 

The instrument we used for the gathering of data was 

a semi-structured interview. 

From the analyses of the description made by the 

carers, from their lived experiences, we could identify 

the needs for support and used strategies, becoming 

essential the need of information, economic support, 

security towards the future, a flexible and working 

schedule, physical and psychological support. 

Parents adapt several strategies day by day to face the 

difficulties that their children’s disease impose, from 

adjusting the architectonical conditions and the 

materials of their own houses in order to help in the 

activity of their children, to changing their own 

project of life. 



How Can Informal Caregivers in Cancer and 

Palliative Care Be Supported? An Updated 

Systematic Literature Review of Interventions 

and their Effectiveness 

Harding R. 1 , List S. 1 , Epiphaniou E. 1 , Jones H.M. 1 


Care, Policy & Rehabilitaiton, London, United 


Background: The needs of informal carers of 

patients with cancer or advanced disease are varied, 

complex and largely unmet. 

Aim: To update a 2001 review to identify and 

appraise the available peer review evidence on the 

effectiveness of interventions to support informal 

carers patients with cancer or receiving palliative care 

(PC), and to determine the current state of science. 

Method: Articles were searched from 2001 to week 1 st 

July 2010 using Medline, PsychINFO, and CINAHL. 

Inclusion criteria were studies reporting intervention 

data for informal adult caregivers of a patient with a 

diagnosis of cancer or receiving PC. Each study was 

assessed using the Jadad Rating and the Quality 

Rating Scale of the Clinical Guidance Outcomes 

Group. 

Results: 33 studies met the inclusion criteria. The 

evidence available suggests a generally positive 

impact for different interventions: 1:1 (n=8), Dyads 

(n=4), Group (n= 9), PC/Hospice (n=6), 

Information/Training (n=3), Physical (n=2), Respite 


(n=1). 3 studies were promising in their results 

concerning effectiveness. The findings show that 

although the two technologically-based case studies 

are still at an embryonic stage, these appear to have 

potential to improve outcomes for carer support. 

Discussion: Future research requires further improved 

methods and the development of relevant and 

validated measures for the domains of carer support, 

carer burden, increasing carers’ coping-skills and 

reducing carers’ psychological distress. There is a need 

to prioritise multi-centre studies utilising RCT and 

mixed-methods, enabling robust studies with larger 

sample sizes to be reported, allowing for the possibility 

of more consistent and comparable outcome measures. 

The 4 randomised controlled trials and 6 prospective 

studies, as well as other studies cited have shown 

evidence of positive outcome measures around 

increasing coping-skills and carer support, whilst 

decreasing carer distress, burden and depression. 

Not funded. 



How Close Persons of Patients with End Stage 

Kidney Disease (ESKD) on Maximum 

Conservative Management (MCM) Deal with 

End of Life Issues: Findings from a Narrative 

Study 

Low J.T. 1 , Myers J. 1 , Burns A. 2 , Smith G. 3 , Davis S.E. 1 , 

Hopkins K. 2 , Johnston S. 2 , Jones L. 1 

1 UCL Medical School, Marie Curie Palliative Care 

Research Unit, London, United Kingdom, 2 Royal Free 

NHS Trust, London, United Kingdom, 3 Imperial 

College London, London, United Kingdom 

Background: Close persons play an important role 

in caring for elderly renal patients, though few studies 

have looked at the impact on those caring for patients 

who have elected not to have dialysis treatment but 

have opted for maximum conservative management 

(MCM). 

Aims: To explore close persons’ experiences of caring 

for patients who are receiving MCM. The focus of this 

presentation will specifically look at close persons’ 

perceptions of the future and how they tackled end of 

life issues. 

Methodology: Qualitative interviews were carried 

out with 26 purposefully sampled close persons across 

five renal centres in southeast England, using a 

narrative approach. 

Findings: Most close persons were aware of patients’ 

limited lifespan as a result of their kidney disease. 

Discussions about the future were limited, with most 

close persons taking things on a day to day basis, a 

strategy used partly as a coping mechanism and partly 

due to uncertainty about the prognosis of the disease. 

Only eight close persons had any discussions or 

arrangements with patients about their end of life 

care. These focused mainly on sorting out patient’s 

financial affairs, funeral arrangements or deciding on 

the patients’ place of death. For most close persons 

and their patients, a hospice was the preferred place of 

death as many felt a hospice environment would be 

less traumatic both physically and psychologically. 

Whilst some patients would prefer to die at home, 

close persons felt that these patients would be unable 

to remain at home if they deteriorated any further. 

Conclusion: Most close persons preferred to think of 

the future on a daily basis and services need to be 

aware of how to support both close persons and 

patients when having discussions about end of life 

care. Where disagreement exists between close 

persons and patients on preferred place of death, 

services need to be flexible to ensure that close 

persons are fully supported to enable patients to die in 

a place of their choice. 



Psychosocial Intervention in Palliative Care 

towards Families with Under-aged Children 

Manuel I.M. 1 , Langkilde L. 1 

1 Odense University Hospital, Palliative Team Fyn, 

Nyborg, Denmark 

A frequent problem for palliative patients is how to 

involve and relate to their children concerning the 

illness and impending death. This pilot study 

conducted in a palliative care setting in Denmark 

aimed to clarify patients’ needs for support towards 

involving their children in the illness process and to 

open up for a dialogue between parents and children 

in preparation for the death of the patient. 

Design: Guided family conversations were offered to 

patients referred to a palliative care team if they had 

children under age 18. Two meetings before and two 

after the death uncovered points of concern and 

focused on how to involve the child, support it in its 

grief and help it to an acceptance of the death of the 

parent. Children above 12 years were invited to 

participate in meetings. Six months following death, 

the surviving parent was sent a questionnaire 

evaluating the intervention. 

Results: All eligible families elected to participate. 

During family conversations the following primary 

concerns were identified: 

- how to support each other in the family 

- the wellbeing of the children 

- how to talk to the children and prepare them for the 

death 

- how to say goodbye and be remembered by the 

children 

The evaluation of the intervention showed that 

meetings positively changed the relationships 

between patient and child and led patients to think of 

new ways of saying goodbye not previously thought 

of. Surviving parents were likely to contact 

complementary support systems after the end of 

services from the palliative care team. 

Conclusion: Psychosocial intervention for palliative 

patients with under-aged children presents an unmet 

need in Danish palliative care. Guided family 

conversations as an integrated component of 

palliative care services are effective in promoting open 

dialogue and preparation for death and were seen to 

be helpful to both children and parents. 



Quality of Life of Patients in the Vegetative 

State as Assessed by Caregivers 

Kuehlmeyer K. 1 , Borasio G.D. 2 , Jox R.J. 1 





Aims: We aimed to examine how professional and 

family caregivers assess the quality of life (QoL) of 

patients in the vegetative state (VS). 

Methods: A mixed methods study was conducted in 

a long-term-care setting. We used a numeric rating 

scale (NRS, range 0-10) as a single item indicator for 

quality of life and performed semi-structured 

interviews on the care for VS patients. So far we 

included ten family caregivers and 13 nurses of VS 

patients in long-term care facilities. The interview 

transcripts were analyzed using qualitative content 

analysis according to Philip Mayring, assisted by the 

software MAXqda. The arithmetic means of the NRS 

in both groups were compared with a t-test. 

Results: Almost all participants (n=22) felt able to 

assess the QoL of VS patients. It was rated on average 

3.3 on the 10-point NRS and there was no difference 

between the assessment by family caregivers and 

professionals. The interviews revealed that the 

judgements were based on processes of comparison. 

Professionals judged the patients’ QoL to be low 

compared to healthy people or the patients’ 

premorbid QoL, but high compared to other PVS 

patients who, living in regular nursing homes, didn’t 

receive the same quality of care and rehabilitation. 

Family caregivers evaluated the patients’ potential for 

improvement which was based on their own 

understanding of the prognoses. This was influenced 

by their high hopes for the patients’ recovery. 

Conclusion: Family caregivers and nurses felt able to 

assess the QoL of patients in VS although VS patients 

are considered to be unaware and unable to perceive, 

have emotions or communicate. This study allows 

insights into the subjective conceptualizations of VS 

patients’ QoL by professional and family caregivers. 

We discuss the impact on caregivers’ attitudes towards 

withholding or withdrawing life-sustaining 

treatment. 



The Longest Night: The Sleep Experiences of 

Carers of Breathless Patients 




Background: Family carers are essential in 

managing patient symptoms, particularly 



breathlessness. However, little is known about the 

sleep experiences of those caring for heart failure (HF) 

and lung cancer (LC) patients. 

Aim: To describe the sleep quality of carers who look 

after breathless patients & contrast this between two 

conditions (LC and HF). 

Methods: Cross-sectional survey of carers & patients 

with breathlessness: including burden (ZBI-12 and 

positivity scale), sleep (PSQI), breathlessness (Borg 

scale) and QoL (SF-36). Participants recruited from 

two London hospitals. Inclusion criteria: patients 

with breathlessness & their nominated caregivers. 

Descriptive analysis used to measure similarities & 

highlight differences between HF and LC carers. 

Results: 51 HF and 50 LC carers recruited (93 

patient/carer dyads). Most carers were spouses (72%), 

female (80%) & lived with the patient (80%). HF 

carers were more likely to be looking after patients 

without help. Nearly three-quarters of all caregivers 

experienced severe sleep problems (global PSQI>5), 

mean global PSQI 8.0 in LC carers, 7.8 in HF carers. 

Half of all carers reported sleep disturbances. Waking 

in the night and difficulties getting to sleep were the 

most prevalent problems in both groups. Poor carer 

sleep quality was associated with increased carer 

burden on ZBI-12 (rho=0.40, p=0.01), and poorer 

carer quality of life (rho=-0.39, p< 0.0005). Both carer 

groups similarly rated patients’ breathlessness as 

moderate (3 on Borg scale=moderate) but severity of 

breathlessness was not related to carer sleep quality 

(ń 2 =0.2, p=0.8). Caregiver sleep quality was not 

related to patient sleep quality (rho=0.07, p=0.6). 

Conclusions: Sleep disturbances affected HF and LC 

carers similarly with poor sleep quality in nearly 

three-quarters of carers. Health professionals need to 

target interventions aimed at managing carers’ sleep 

disruptions at night and assess the sleep patterns of 

those experiencing more burden. 



Is Mindfulness Helpful for Relatives of 

Palliative Care Patients? 

Kögler M. 1 , Brandstätter M. 1 , Borasio G.D. 2 , Fegg M.J. 1 





Aims: Mindfulness has been described as a 

supportive practice in the grieving process. We have 

designed a psychotherapeutic group intervention for 

family caregivers of palliative care patients. 

Participants were facing the imminent or recent loss 

of a beloved one. The aim of this study was to 

investigate the relation between mindfulness, 

psychological distress and quality of life as well as if 

mindfulness was helpful for the group participants. 

Methods: In a randomized controlled trial caregivers 

were assigned to a treatment or control group. They 

filled in self-report measures on mindfulness 

(Cognitive and Affective Mindfulness Scale-Revised), 

psychological distress (Brief Symptom Inventory) and 

quality of life (Satisfaction with Life Scale) as well as 

single items (range, 0-4) on the helpfulness of 

mindfulness practice in the group intervention. 

Results: Preliminary analyses show a substantial 

negative correlation between mindfulness and 

psychological burden (r=-.60, p< .001) and a positive 

correlation with quality of life (r=.50, p< .001) (n=136) 

in all caregivers. Participants in the intervention 

(n=67) evaluated mindfulness as very helpful 

(3.13±0.88). 

Conclusion: Mindfulness training seems to be 

feasible and helpful for caregivers of palliative care 

patients. Moderating variables will have to be 

investigated in further detail (e.g., differences between 

the “dose” of mindfulness practice). Future qualitative 

interviews will show how participants understand the 

concept of mindfulness and how they integrate it into 

their daily life. 

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A Qualitative Study of the Support Needs and 

Preferences of Men Caring for People Severely 

Affected by Multiple Sclerosis 

Sibley A. 1 , Payne S. 2 , Addington-Hall J. 1 


Sciences, Southampton, United Kingdom, 2 Lancaster 

University, Division of Health Research, Lancaster, 


Aims: A recent EAPC white paper has highlighted a 

paucity of research exploring male carers´ experiences 

of undertaking a caring role, their support needs and 

preferences for support. This is particularly relevant in 

Multiple Sclerosis (MS), which is most common in 

women. Therefore, this study aimed to identify 

support needs and preferences of men caring for 

people severely affected by MS. 

Method: A purposive sample of men caring for 

people severely affected by MS was identified via MS 

nurses. Participants were interviewed at home and 

their interviews were tape-recorded and transcribed 

verbatim. Thematic analysis was undertaken to 

uncover salient issues pertinent to male carers. 

Results: 26 men were consecutively recruited and 

interviewed. 25 were caring for someone with 

secondary progressive MS and 25 were married to a 

woman with MS. Fourteen themes emerged from the 

thematic analysis. Seven of these themes highlight 

experiences of support from which support needs can 

be inferred. These include male carers´ personal 

adaptation and logistical adaptation to a caring role, 

the physical and emotional impact of caring, the loss 

of carer autonomy, the importance of financial issues, 

the need for sense-making of the caring role, and 

perceived gender issues linked to the caring role (e.g. 

health professionals´ assumptions about male carers´ 

abilities). The other seven themes describe explicitly 

expressed needs and preferences of male carers. These 

include needs for better information, continuity of 

care, maintaining normality, personal time for the 

male carer, a central and reliable source for 

information, services that acknowledge the needs of 

male carers, and a preference for therapy centres as a 

key source of support. 

Conclusions: The emergent themes highlight 

important priorities for men caring for women with 

severe MS. Similarities and differences between male 

and female carers of people with MS will be discussed. 

This study was funded by the MS Society. 



Impact of the Family Conference (FC) in Acute 

Care Palliative Medicine (ACPMU) 

Powazki R. 1 , Hauser K. 1 , Walsh D. 1 , Aktas A. 1 , Karafa 

M.T. 2 , Davis M.P. 1 , Lagman R. 1 , Le Grand S. 1 , Schleckman 

E. 1 

1 Cleveland Clinic Taussig Cancer Institute, Department 

of Solid Tumor Oncology, Harry R. Horvitz Center for 

Palliative Medicine and Supportive Oncology, 

Cleveland, OH, United States, 2 Cleveland Clinic Lerner 

Research Institute, Department of Quantitative Health 

Sciences, Cleveland, OH, United States 

Background: Over 800 patients are admitted to our 

ACPMU annually. The FC is a usual care, formal 

scheduled meetings (pre-approved by the patient) 

with the medical team & family members to identify 

medical & psychosocial needs. Our objectives were to 

describe FC characteristics, determine family 

information needs & assess distress to the patientidentified 

spokesperson (SP). 

Methods: We enrolled consecutive cancer patients & 

developed a pre- & post-FC survey of 18-questions. 

Post-FC survey had 2 open-ended questions. SP were 

given the pre- & post- FC surveys & distress 

thermometers (DT). The DT included 11-point 

numerical rating scale. Descriptive statistics reported 

percentages & means (±SD). Open-ended questions 

were analyzed qualitatively. 

Results: We screened 99 FC; 72 were analyzed. 56% 

of patients were female, mean age 66 yrs; 29% African 

American; 40% had delirium. Patients attended 79% 

FC; 60% held bedside. Mean of 4 people present; 

children (65%), spouses (56%), siblings (39%), parents 

(13%), others (32%). FC mean duration 50 ± 16 min. 

The SP categories: spouse or partner (49%), child 

(30%), another family member (17%), a parent (4%). 

67% of SP knew FC reason. Most frequent FC reason 

was hospice transition (76%). Number of issues 

discussed: 15 ± 3 (79%). Issues not sufficiently 

reviewed: Living Will 38%, resuscitation status 42%, 

DPOA for health care role 46%. FC was valuable: SP 

(97%) & physicians (96%). DT score was 5.6 ± 3.2 

before & 4.4 ± 3.3 after; average decrease was 1.1 ± 2.7; 

the median -1 (-3, 1). Children had greatest DT 

reduction; -1.71 + 2.9; -2 (-3, 0). Distress level 

increased when other family members: were included 

to understand prognosis, needed to plan post acute, 

or FC recall issues. 

Conclusions: 

1) Participation suggests FC is important 

2) 50 min. needed for appropriate decision-making 

3) Children as SP processed the FC information with 

less distress 

4) FC provides distress management, improves 

patient & family satisfaction. 



How Well Do We Know the Patient’s Family? 

Can Sociograms Be More Useful than 

Genograms in Palliative Care? 

Anagnostou D. 1 , Daveson B. 1 , Higginson I. 1 


Palliative Care, Policy and Rehabilitation, London, 


Aim: To explore the family dynamics and how these 

might influenced decision making of care and 

patient’s experience of care and illness. 

Methods: A longitudinal qualitative study was 

carried out, employing ethnography as its 

methodological framework. 14 patients and 32 family 

members were followed over a period of 18 months, 

every time they were coming in contact with the 

health services. The data was collected through 

participant observation, semi-structured interviews 

and discussions. The data was analysed using 

thematic analysis and case study analysis. 

Results: Families proved to have a vital role in 

provision of care but also decision making of care in 

the Greek context. The family dynamics, social roles 

and relationships seemed to play an important role in 

shaping the patient’s care. Sociograms were employed 

to explore those dynamics and roles. They proved to 

be more fruitful in comparison to genograms, as they 

offered the opportunity to explore more the social 

relationships and the actual roles adopted by each 

family rather than traditional roles (spouce, 

father/mother, children). As, they are not based on 

the family tree, they gave the opportunity to explore 

outside of the stereotypes of what was expected by 

those traditional roles, and instead explore the roles 

each family had created for themselves. Since 

sociograms do not rely exclusively on the relative 

connections, they offered the flexibility to include 

other people as part of the family, such as friends; 

even more the members of the health care team 

involved in the care. 

Conclusion: The sociogram can be a useful tool to 

understand the family structure and the dynamics 

among all members; it may help health care 

professionals to organise and provide more sensitive 

and appropriate care for the patients and their 

different family members, by respecting and building 

on their established ways of being. 



„Them and the Others”- The Importance of 

Social Interactions - The Impact of 

Recreational Activities on Social Isolation of 

the Patient and their Family 

Anania P. 1 

1 Hospice Casa Sperantei, Social Work, Brasov, 


Background: The social worker is an integral part of 

the palliative care team, fulfilling a number of roles 

such as the provision of information, support, 

counselling, mediator and advocate for patient and 

family’s legal rights and benefits. 

Aim: National research has shown that loneliness is a 

major problem for patients and families affected by a 

terminal illness and the purpose of this project is to 

describe social activities that promote patient and 

family integration in the community life. 

Method: For the patients and families enrolled at 

Hospice Casa Sperantei a social evaluation is done 

together with the holistic history and are identified 

the needs for inclusion in one or more forms of social 

support: periodic group meetings, celebrations, trips 

to theatre, concerts and summer camps. 

Results: In the last year the social work department 

at Hospice Casa Sperantei organised: 16 support 

groups for relatives or carers of paediatric patients, 

with an average of 20 individuals taking part in each 

group; 3 meetings were arranged for children who 

have a family member affected by a terminal illness, 

with an average of 15 participants; celebrations for 

paediatric patients, their siblings and children of adult 

patients were arranged at Christmas, Easter and 1st of 

June, with 190 children present each time; each year 

summer camps are organised for paediatric patients, 

their siblings and children of adult hospice patients, 

with 96 children taking part. 

Conclusions: After each event an assessment session 

is run with the participants involved and, according 

to the patients feed-back in regard to the multiple 

forms of social integration, the great benefit gained by 

the patients and their family members made possible 

for these activities to become a current practice 

among the hospice’s services. 



How Children Handle Life when their Mother 

or Father Is Seriously Ill and Dying 

Buchwald D. 1 , Schantz-Laursen B. 2 , Delmar C. 2 

1 Vendsyssel Hospital, Hjørring, Denmark, 2 Aalborg 

Hospital, Aarhus University Hospital, Aalborg, 

Denmark 

Aim: The aim of this study was to describe and 

understand how children handle their life when a 

mother or father is dying. 

Participants: The study includes a total of seven 

children (11-17 years), who lived with a seriously ill 

and dying parent. 

Design: The research design was phenomenological 

hermeneutic. Method used was a combination of the 

qualitative research interview and video diaries. 

The Qualitative research interview: A theme based 

interview guide was developed. The interviews were 

conducted in the children’s home. The interviews 

were tape recorded. 

The video Diary: After the interview the children 

conducted a daily camera session in which they 

shared their feelings, reflections and other matters 

relating to the day and its events with the camera. 

Data analysis: The analysis and interpretation were 

carried out during the whole research process in a 

continuous hermeneutical flow between the whole 

and the parts and between an understanding and an 

explanation. 

Findings: The analysis brought out six themes: 

Death’s waiting room. Masquerading. Inhabiting a 

world unknown to others. From care receiver to 

caregiver. Difficult emotions. Finding meaning in the 

meaningless. 

Conclusion: When children live in a family with a 

dying mother or father, they find that their home 

becomes a waiting room for death. Thoughts about 

death and fear take a prominent position in their 

lives, and if they are not given honest information 

about the disease and its prognosis, they will often be 

left alone with their thoughts. Their lives are filled 

with worries, thoughts and emotions that they are 

not accustomed to and that they do share with 

neither their parents nor their friends. They use a lot 

of energy taking care of the dying parent by 

performing several practical tasks. In order to protect 

people around them they are masquerading their true 

thoughts and emotions. 



Experience of a Primary Caregiver Support 

Program (PACUP) in a Hospital Based 

Palliative Care Unit (PCU) 

Dones M. 1 , Gil O.T. 1 , Arias M.I. 1 , Irazábal I. 1 , Aparicio 

B. 1 , Sánchez M.I. 1 , de Luis V.J. 1 , Elvira M.J. 1 , Fernández 

S. 1 , Morales G. 1 , Valls J. 2 

1 Fundación Instituto San José, Palliative Care Unit, 

Madrid, Spain, 2 Fundación Instituto San José, Medical 

Director, Madrid, Spain 

Introduction: Primary caregivers are a key part of 

the comprehensive patient care at the end of life. It is 

necessary to provide them with tools and skills that 

both enable them to participate in the process, whilst 

giving support, help and reassurance, therefore 

reducing the overwhelming burden. In response to 

these needs, the PACUP Program was initiated in the 

PCU. 

Objectives: 

- To describe the development of the PACUP Program 


- To verify whether the contents of the sessions 

respond to caregivers’ demands 

- To develop a stable structure of contents and 

schedules for the “School of Caregivers” 

- To concrete indicators in order to assess fulfilment of 

the objectives of the program 

Method: 

- Qualitative descriptive study 

- Weekly hosting sessions, with record of attendants, 

topics discussed and questions raised 

- Assessment of caregiver burden using the reduced 

Zarit scale 

- Inclusion criteria: Primary caregivers of patients 

admitted in our PCU, from 01/10/09 to 14/04/10 

Preliminary results: 

- Sessions: 23; participant caregivers: 136 

- Mean score in the reduced Zarit Scale at admission: 

20.3 

- Main topics covered: Care and Control of symptoms, 

Patients’ autonomy, Self-care, How to communicate 

with the patient, Feeding, Agony phase 

- Main topics requested: Communication skills and 

approach to answering difficult questions, Care in 

agony, Comprehensive care, feeding and symptom 

control, Care and attention of implicated children, 

Caregiver burden. 

Conclusions: 

- There have been 23 sessions, with participation of 

136 caregivers and 103 professionals 

- Mean Zarit score at admission was of 20.3 

- We have found mismatch between the main 

concerns requested by caregivers and the topics 

covered in the sessions 

- The most demanded topics for monographic 

sessions are: Comprehensive patient care, 

Communication skills and Care in agony 

- To improve the program evaluation, the need to 

include specific indicators of quality of life for 

patients and families and indicators to measure 

acquired knowledge, have been identified. 



Relatives Experience of the Care They Receive 

during a Patients’ Terminal Illness 

Corroon A.-M. 1 , Hogan M. 2 

1 University of Dublin, Trinity College, School of 

Nursing & Midwifery, Dublin, Ireland, 2 St James’s 

Hospital, Palliative Care Dept., Dublin, Ireland 

The aim of this study was to gain an understanding of 

relatives’ experience of the care they receive during a 

patients’ terminal illness within an acute Irish 

oncology setting. In palliative care, the patient and 

the family comprise the unit of care; however, nurses 

continue to afford priority to the care of the patient. 

Nurses have the greatest level of contact with the 

terminally ill patient and their relatives, thus they are 

ideally placed to effect positive change in the care 

relatives receive. 

A Hermeneutic phenomenological approach with a 

prospective design was used to follow families’ actual 

experiences and determine what made visiting a more 

positive experience. Palliative Care records were used 

to access the sample and a purposive sampling 

strategy was used to select relatives. The sample was 

confined to those over 18 years of age, who consented 

to take part and had English as their first language. 

Two unstructured interviews were carried out with a 

sample of 7 relatives. 

Relatives primarily needed to experience that the 

patient receives timely, appropriate care from staff in 

a considerate and sensitive manner. Relatives deemed 

regular communication with the nursing and medical 

teams as very important. They required nearby access 

to food, toilet and rest facilities and a comfortable 

chair to sit on at the patient’s bedside. Visiting 

relatives in hospital was considered to place a 

financial burden on families and some required 

assistance with same. 

The findings justify the need for greater resources to 

be allocated to this aspect of care; amenities need to be 

provided for relatives and nurse managers need to 

facilitate staff to provide better support. A heightened 

awareness of the experience of relatives of terminally 

ill patients is needed. The author would like to 

acknowledge funding from the Irish Hospice 

Foundation. 



The Influence of Cancer Disease on the Family 

Relationship 

Janiszewska J. 1 , Błudzieč J. 2 , Lichodziejewska - Niemierko 

M. 1 

1 Medical University of Gdańsk, Department of 

Palliative Medicine, Gdańsk, Poland, 2 INVICTA 

Clinic of The Woman’s Health, Gdańsk, Poland 

Background: For many cancer patients and their 

families the experience of cancer is an intensely 

stressful one. The purposes of this study was to 

establish the influence of cancer disease for 

communication and the relationships in family as 

well as to assess the psychosocial condition of family 

members. 

Material and methods: The study involved 90 

persons aged between 22 and 84. The studied persons 

were classified in two groups: the first group (I) 

consisted of cancer patients (n = 50); the second group 

(II) involved their family members (n=40). The 

following research instruments were used: The 

Coping Inventory for Stressful Situations (CISS), The 

Relationship Questionnaire (RQ) and a questionnaire 

covering the use of different sources, including 

individuals and family members. The questionnaire 

also incorporated validated measurements of 

psychological and health condition as well as social 

situation of patient’s family members. 

Results: Analysis of the results showed that: 

1) The cancer evokes a wide range of emotions, such 

as fear, uncertainty and anger as well as belief, hope, 

the helpfulness. This is a time of great emotional 

distress for patient and family; 

2) 27% of studied families limited their occupational 

activity; 

3) The cancer influenced on relationship and 

communication in family. The relationship in family 

got better according to about 70% studied; 

4) The cancer made better the social support and 

worsened the physical state of members of family 

patient; 

5) 75% of patients limited their household duties. 

Conclusions: The results revealed that the cancer 

disease has significant influence on family 

relationship. A diagnosis of cancer affects significantly 

occupational activity, psychosocial and somatic 

condition of patient´s family members. These results 

also show the differences between patient and his 

family in quality of life assessment. 



Home Caregivers’ Satisfaction with the 

Services Provided by a Military Hospital’s 

Home Support Program 

Al-Khashan H.I. 1 , Mishriky A.M. 1 , Selim M.E. 1 , El-Sheikh 

A.M. 1 , Saeed A.B. 2 

1 Riyadh Military Hospital, Family & Community 

Medicine, Riyadh, Saudi Arabia, 2 College of Medicine, 

King Saud University, Department of Family and 

Community Medicine, Riyadh, Saudi Arabia 

Objectives: Families’ satisfaction is essential to the 

success of home care support services. This study 

aimed to assess home caregivers’ satisfaction with 

support services and to identify the predictors of that 

satisfaction. 

Methods: The study was conducted in the Family 

and Community Medicine Department at a military 

hospital using cross-sectional design. It included 240 

participants recruited by systematic random sampling 

from the division registry. Data were collected 

through telephone calls using a designed structured 

interview form. All research ethics principles were 

followed. 

Results: The response rate was 76.25%. Most 

caregivers were patients’ sons or daughters. The 

duration of patients’ disabling illnesses varied from 

less than 1 year up to 40 years. The majority of 

caregivers agreed that the home care services team 

provided proper health support to the patients, and 

improved caregivers’ self-confidence in caring for 

their patients. Overall, on a scale of 100%, the median 

level of satisfaction was 90%, and 73.3% of caregivers 

had a satisfaction score 75% or higher. Vocational 

therapy and physiotherapy were the least satisfactory. 

Caregiver’s older age, female gender, and more 

frequent home visits were positive independent 

predictors of caregivers’ satisfaction scores. 

Conclusion: Although most caregivers are satisfied 

with the services provided by the home support 

program, there are still areas of deficiency, particularly 



in physiotherapy, vocational therapy, and social 

services. The implications are that caregivers need to 

be educated and trained in caring for their patients 

and gain self-confidence in doing so. The program 

administration should improve physiotherapy, 

vocational therapy, social services, and procedures for 

hospital referral. 



The Experiences of Relatives with the 

Provision of Palliative Sedation: A Systematic 

Review 

Bruinsma S.M. 1 , Rietjens J.A.C. 1 , van der Heide A. 1 

1 Erasmus Medical Centre, Public Health, Rotterdam, 

Netherlands 

Background: Guidelines about palliative sedation 

typically include recommendations that try to protect 

the wellbeing of relatives, stressing adequate 

provision of information and support. The aim of this 

study is to systematically review studies on the 

experiences of relatives with palliative sedation. 

Methods: PubMed was searched for publications 

about empirical studies on relatives’ experiences with 

palliative sedation. We investigated relatives’ 

involvement in the decision-making and in the 

provision of sedation, whether they received adequate 

information and support, and relatives’ emotions. 

Results: Of the 64 articles identified, 12 were 

included; eight studies were added after hand search. 

The studies (12 quantitative and eight qualitative 

studies) were conducted in nine countries; four 

studies concerned relatives’ reports about their 

experiences and 16 concerned physicians’ and nurses’ 

proxy reports. Caregivers involved relatives in the 

decision-making in 75-100% (11 studies) and in 75- 

90% the relatives received adequate information (six 

studies). Despite the fact that the majority of relatives 

were reported to be comfortable with the use of 

palliative sedation, eight studies showed that several 

relatives expressed distress before, during or after the 

use of sedation. Such distress was related to the aim of 

the sedation, the patient’s possible suffering or the 

wellbeing of the relatives themselves, and was found 

to lead to feelings of guilt, helplessness, and physical 

and emotional exhaustion. No studies reported about 

relatives’ involvement in the provision of sedation or 

on the support provided. 

Conclusion: The majority of relatives seems to be 

adequately involved in the provision of palliative 

sedation to their dying relative. However, several 

relatives experience distress due to sedation. Studies 

do not show whether or how support was provided, 

pointing to a need for further attention in practice 

and policy. 



Is there a Role for Health Education in 

Palliative Care? 

Baker N. 1 , Meystre C. 1 

1 Marie Curie Cancer Care, Marie Curie Hospice, 

Solihull, United Kingdom 

Background and aims: There is a general 

perception that health education with the aim of 

improving or maintaining health has little or no role 

to play in palliative care. However, with the scope of 

palliative care changing to include patients at earlier 

stages in their disease, opportunities to promote 

health in both patients and carers are increasing, and 

may be more important than traditionally perceived. 

There are concerns that such interventions may 

overburden individuals at an already difficult time. 

We performed a questionnaire based survey to 

evaluate the acceptability of a health education 

program within a palliative care setting. 

Method: Questionnaires were completed by 25 staff, 

15 patients and 15 carers/relatives at a UK hospice. 

Results: This pilot study suggests that health 

education may be both beneficial and acceptable. 

Patients and carers reported different, but collectively 

similar health education needs which included 

disease related advice, diet, exercise and stress 

management. Relatives worried about getting cancer 

and patients were particularly concerned about their 

family´s health. 13/15 relatives wanted more 

information about cancer genetics, although only 2 

had ever been offered such advice. All 15 patients and 

13/15 relatives supported offering cancer prevention 

advice to families and carers of palliative care patients. 

Hospice staff, however were less positive. 

211 


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(Friday) 


Conclusions: Wider surveys are needed to look at 

the views of relatives of patients at different stages of a 

life limiting illness, and to establish if these views are 

similar across larger and culturally diverse groups. 

Further qualitative studies are needed to determine 

the appropriate timing and format of any health 

education interventions. The integration of 

preventive medicine into a hospice setting would 

need to overcome a number of barriers, and in 

particular staff concerns. 



Living with Breathlessness - Burden of 

Informal Carers of Patients with 

Breathlessness in Advanced Cancer or COPD 

Schildmann E.K. 1 , Gysels M. 2,3 , Booth S. 4 , Kühnbach R. 5 , 

Higginson I.J. 2 , Bausewein C. 2 

1 Helios Klinikum Berlin Buch, Dept. of Haematology, 

Oncology and Tumour Immunology, Berlin, 

Germany, 2 King’s College London, Dept. of Palliative 

Care, Policy and Rehabilitation, Cicely Saunders 

Institute, London, United Kingdom, 3 Universitat de 


Research, Barcelona, Spain, 4 Addenbrooke´s Hospital, 

Palliative Care Team, Cambridge, United Kingdom, 

5 Munich University Hospital, Interdisciplinary Centre 


Background: Breathlessness (B) is a common 

symptom at the end of life which is distressing to 

witness. There is little research on its impact on 

informal carers. Understanding the burden of carers 

of breathless patients and its relation to the patients´ 

symptom burden is essential for planning adequate 

carer support. 

Aim: To assess the burden of carers of patients with B 

in advanced cancer or COPD in relation to patients´ 

symptom burden. 

Methods: Breathless patients with advanced cancer 

or COPD stage III/IV and their carers were recruited 

from hospital and home care sites in Munich, 

Germany. At monthly intervals over six months, 

carers completed the Burden Scale for Family 

Caregivers (BSFC, score range 0 - 84) and the Barthel 

index. The patients rated their symptoms on the Borg 

Scale, the Memorial Symptom Assessment Scale and 

the Hospital Anxiety and Depression Scale. The first 

BSFC scores available from each carer were analysed in 

relation to patients´ condition and symptoms. 

Results: Questionnaires from 50 (27 women, 23 

men) of the 73 carers were evaluable (68%). The 

median BSFC score was 21.5 (range 3 - 58.1). Only 3 

carers had “middle” and 3 carers “high” burden scores 

as defined by the BSFC. There was no difference in 

burden scores between carers of COPD and cancer 

patients, and no significant correlation between 

burden scores and patients´ B severity, global 

symptom burden, anxiety, depression or functional 

status. 

Conclusions: The comparably low median BSFC 

scores and the lack of relationships between carer 

burden and patient symptom burden should be 

interpreted with caution, as the BSFC has not been 

validated in the population investigated in this study. 

Methodological considerations and the analysis of 

free-text answers (not reported here) suggest that the 

BSFC scores underestimate the carers´ burden. The 

development of validated outcome measures and the 

evaluation of interventions to support carers are 

important areas for future research. 



Quality of Life and Social Support Family 

Caregivers 

Macková M. 1 

1 Masaryk University, Medical Faculty, Department of 

Nursing, Brno, Czech Republic 

Background: Family caregivers play a vital role in 

caring for elderly in non cancer end-oflife 

care.However needs of family caregivers are often 

underestimated. 

Method: A prospective survey of 108 family 

caregivers was undertaken assesing a quality of life 

and hypothesized predictors including social support, 

age, gender and education. The data were analysed 

using logistic regresion. 

Results: The data analysis allowed to draw up a risk 

profile of caregiver: main caregiver in family, caregiver 

and elderly live together, high or medium 

dependency of elderly, small number of persons of 

social support networks, low level of received forms of 

social support (information, emotional 

support,awards,practical assistance),overlapping with 

other long-term caring and the time-consuming 

activity(employment, child care, studies), factors of 

age, education, residence, sex and relationship to care 

recipient in the context of the overall situation of 

caring (for example: caring daughter in middle age 

with basic education,caring old husband living in 

remote community, etc. ). 

Conclusions: Well structured and adequate social 

support, which stems from the support of 

interpersonal relationships, is committed to 

improving the quality of life of family caregivers and 

thus ultimately the recipients of care. 



Professional Careers Opinion of the Loved 

Ones Understanding that the Patient Is Dying 

and the Support They Need and the Possibility 

the Careers Have to Give this Support 

Benkel I. 1,2 , Wijk H. 3 , Molander U. 1,4 

1 Sahlgrenska University Hospital, Geriatric Clinic, 

Gothenburg, Sweden, 2 University of Gothenburg, 

Geriatric Dep, Gothenburg, Sweden, 3 Sahlgrenska 

Academy, Inst of Care and Health Science, 

Gothenburg, Sweden, 4 Sahlgrenska Academy, 

Geriatric Dep, Gothenburg, Sweden 

Aim: To investigate how the professional careers 

assess the loved ones understanding of the patients 

incurable disease and their possibility to manage such 

a situation. 

Design and method: The study was conducted at a 

oncology, urology and geriatric clinic at a major 

university hospital. The study had a quantitative 

approach with a semi-structured questionnaire 

created for this issue. 343 questionnaires were 

distributed to the professionall careers, physicians, 

nurses and assistant nurses 

Results: There were 226 persons participated in the 

study (66%). 28 % was from oncology wards, 47 % 

from geriatric wards and 25 % from the urology 

wards. 

Most of them (90%) estimated that the loved ones 

often understand that the patient has an incurable 

disease. Only a few estimated that this always or rarely 

occurred. There was no difference between clinics or 

professional categories. The majority (74%) thought 

the loved ones sometimes understand that the patient 

is going to die. Nearly all of the remaining 

participants (23%) estimated that the loved ones are 

well informed. 

A majority participant (62%) estimated that the loved 

ones talk to the professional careers about the 

patients’ upcoming death. 

Most of the professional careers (82%) describes that 

they can give the support the loved ones need during 

the time the patient is treated at the hospital. The 

major support was to talk to the loved ones. 

The careers stated that the loved ones need support 

also after the patient’s death but a majority (85%) 

answered that the clinic did not have any or they did 

not know if the clinic had any follow-up. 

Conclusion: The careers estimated in this study that 

support, mostly by talks, to the loved ones was 

important both when the patient was alive but also 

after death. They also stated that they could give the 

loved ones this support while the patient was treated 

at the hospital but rarely after death. 



Description of the Social Context and Degree 

of Information in Oncologic Patients 

Admitted to the Palliative Care Unit 

Sales P. 1 , Cabrera M. 1 , Garcia R. 1 , Diaz A. 1 , Cañadas M. 1 , 

Aguilar J. 1 


Sabadell, Spain 

Objectives: To describe the social context of 

oncologic patients and the degree of information they 

have about their disease on admission to the palliative 

care unit. 

Methods: We prospectively recorded the following 

information during the first 72 hours after admission 

from all oncologic patients admitted to the unit 

between August 20, 2009 and November 20, 2009: 

sociodemographics, social/family environment (main 

caretaker, household situation), patient’s knowledge 

of their diagnosis and prognosis, what information 

they wanted to receive, who took decisions, and 

whether they had a living will. 

Results: A total of 160 patients were admitted to the 

unit; 143 met the inclusion criteria. Of these 98 

(68.5%) were men, 74 (51.7%) in the age range 65-80 

years. Of these, 101 (70.6%) lived with their spouses 

and 16 (11.2%) lived with their children; the main 

caretaker was the spouse in 82 (57.3%) cases. 

No problems were detected in the patient’s 

social/family situation in 89 (62.2%) cases, other 

dependent persons lived in the home in 15 (10.5%), 

and signs of exhaustion were detected in 13 (9.1%). 

Patients themselves were the interlocutor with the 

care team in 68 (47.6%) cases. 

At admission, 48 (33.6%) patients knew their 

diagnosis but not their prognosis, 35 (24.5%) knew 

their diagnosis and prognosis, and 14 (9.8%) were 

misinformed. 

Regarding patients desire for information, 101 

(70.6%) asked no questions and 34 (23.8%) wanted to 

be informed. 

One patient (0.7%) had a living will. 

Conclusions: Spouses are the main caretaker for 

more than half the patients. 

Patients themselves are the interlocutor with the care 

team and the decision maker in nearly half the cases. 

A third of the patients had complete information 

about their diagnosis and prognosis. 



Supporting Relatives: An Investigation into 

Obstacles and Aids to Information Exchange 

within Families Affected by Cancer 

Foster C. 1 , Scott I. 1 , Brindle L. 1 , Cotterell P. 1 , Sayers M. 2 , 

Robinson J. 2 , Payne S. 3 , Hopkinson J. 1 , Addington-Hall J. 1 


Sciences, Southampton, United Kingdom, 2 Service 

User, England, United Kingdom, 3 University of 

Lancaster, Lancaster, United Kingdom 

Provision of information for patients and relatives has 

been highlighted as an area for improvement. 

Aims: To explore relatives’ experiences of talking 

about cancer within the family and identify relatives’ 

information and support needs in relation to their 

relative’s cancer. 

Methods: 22 relatives recruited from the local 

community participated in in-depth qualitative 

interviews. Interviews were analysed using a thematic 

approach. 

Findings: Not all participants wanted detailed 

information about cancer at all times or felt able to 

cope with the patient’s (or their own) emotional 

responses. Some communication about cancer was 

generally viewed as beneficial for the family. It 

allowed relatives to support the patient´s preferences 

for care and deal with practical demands, and come to 

terms with difficult issues. Lack of information made 

relatives and partners feel that they were unable to 

offer best care to the patient. The provision of clear, 

written information and opportunities to talk with 

professionals were identified as important. 

Participants stated that they would have liked the 

opportunity to talk to someone else in a similar 

situation, to enable a mutual exchange of information 

and support. Most had not received booklets/leaflets 

from health care professionals and had to acquire 

them themselves. Information was lacking for those 

with rarer cancers and participants turned to the 

internet for information. Most felt they learnt about 

their relatives’ cancer and how to look after them as 

they went along. 

Conclusions: Relatives indicated that a lack of 

information made them feel unable to offer best care 

and support to the patient. They also indicated that 

they felt isolated and did not feel entitled to 

information and support as the patient was the 

priority. Rather than being left to find things out for 

themselves they would have liked guidance. 

Supporting families is likely to enhance the support 

available to people living with and beyond cancer. 




Caring for a Patient with Terminal Cancer at 

Home in Cyprus - The Needs of the Family 

Caregiver 

Tryphonos A.S. 1 , Bellali T. 2 

1 The Cyprus Association of Cancer Patients and 

Friends (PA.SY.KA.F.), Nicosia, Cyprus, 2 TEI 

Thesallonikis, Thesalloniki, Greece 

Purpose: This study explored the lived experience of 

families with cancer patients through the palliative 

home care services. The purpose of this study was to 

answer the question: “What were the needs of the 

caregivers at the terminal stage of the disease and how 

they have being met”? 

Method: The used methodology was descriptive 

qualitative phenomenology. With the use of semistructured 

interviews that took place between March 

2010 and May 2010, 10 caregivers of terminal stage 

cancer patients described their experience from the 

palliative home care services. The method by Colaizzi 

was used for the analysis of the interviews. 

Results: The results of this study identified 

important issues in relation to the palliative homecare 

needs of the caregivers concerning: 

a) information and practical support, 

b) psychological support, but also 

c) continuation of care. While it was found that there 

was complete satisfaction from the part of the 

caregivers in their needs for information and practical 

support, in their needs concerning psychological 

support and continuation of care, several weaknesses 

were found. 

Conclusions: Caregivers of adult cancer patients 

lived experience through palliative home care was a 

psychologically painful experience in which some of 

the caregivers needs were not satisfied, giving reason 

for improvement of the services in the specific areas. 



Asian Women - Caring as an Honour and a 

Duty 

Lund S. 1 

1 Royal Berkshire NHS Foundation Trust, Palliative and 

End of Life Care, Berkshire, United Kingdom 

Aim: To investigate the cultural perspectives of Asian 

women to inform the design of appropriate, 

acceptable and accessible palliative care services. 

Design and method: An interpretivistconstructivist 

design was employed. Focus group 

interviews were undertaken with established Asian 

women/carers’ groups, interspersed with individual 

interviews with women who were current or bereaved 

carers or who had no such experience thus providing 

effective data triangulation. To ensure cultural 

sensitivity ‘User’ representation and validation was 

employed throughout the study. In addition, a bilingual, 

female, Asian Macmillan link worker 

provided assistance with communication and cultural 

interpretation. 

Results: Five key themes were illuminated related to: 

the individual, communication, caring, culture and 

services. 

The study reinforces the complexity of culturally 

acceptable communication, including the sensitive 

negotiation of who should act as interpreter, the 

maintenance of hope and negotiation of phased 

levels of awareness. Issues relating to culture emerged 

including family honour, judgment, gender, tradition 

and religion. Contrary to traditional concern, 

practical support is indeed acceptable to different 

cultural groups and should be repeatedly offered, the 

GP being key to signposting and accessing services. 

Palliative care service providers need to recognise the 

challenge of limitations in communication which 

may lead to frustration in their ability to provide 

empathetic and holistic care. Education and 

supervision may help staff gain a sense of satisfaction 

if their own ideals derived from a Western perspective 

are not met. 

Conclusion: The results challenge the relevance and 

appropriateness of the concept of palliative care, a 

term unfamiliar to this group, in a multi cultural 

environment where patient autonomy and open 

awareness is unusual. A service model of family 

autonomy, which attends to the notion of Izzat 

(family honour), is more culturally appropriate. 



The Child´s Family Experience in Palliative 

Care at Home 

Misko M.D. 1 , Bousso R.S. 1 


Paulo, Brazil 

Palliative care at home often entails extraordinary 

parental effort. The literature 

suggests that providing palliative care in the home 

may be so demanding and disruptive of family 

functioning that it is difficult to sustain over time. This 

study explored to understand the child´s family 

experience in palliative care at home. Data were 

collected and analyzed and the methodological 

framework of the Research Narrative and Symbolic 

Interactionism as a theoretical framework. We 

interviewed 15 families of children in palliative care 

who were in attendance. The situational context of 

having a son or a daughter receiving palliative care at 

home was defined as a daily challenge. Parents 

reported developing the necessary skills to manage this 

new situation in their daily life. They maintained 

control over their lives by being continuously available 

and by supporting one another and taking complete 

responsibility for all of the childs needs. Parental 

mutuality fluctuated, especially with regard to the 

need to access palliative home care services. For the 

most part, palliative care services were incorporated 

into the family´s routine whenever parents were 

unable to control their child´s symptoms. Parents 

reported the need to develop skills to handle this new 

situation in their lives. In most cases, the objective of 

management is to preserve the quality of life of 

children, the maximum possible without physical 

suffering. To ensure a better quality of life for the child 

they are proactive in planning activities to ensure 

home care. Still, the family talks about the difficulties 

that arise in caring for their child, but not about death. 

Know the meanings that the family gives to the 

experience and quality of life allowed strengthen basic 

concepts used in different theories, work with families 

in situations of loss and grief. 



Bereavement Risk Assessment and 

Organization of Follow-up in Palliative Care 

Services at the National University Hospital, 

Kopavogur Iceland 

Asgeirsdottir G.H. 1 , Petursdottir E. 1 , Gudlaugsdottir G.J. 2 , 

Gudmundsdottir G. 1 , Hreidarsdottir I. 1 , Arngrimsdottir 

O.S. 1 , Halfdanardottir S.I. 1 , Sigurdardottir V. 3 

1 The National University Hospital, The Palliative Care 

Unit, Kopavogur, Iceland, 2 The National University 

Hospital, Palliative Home Care Team, Kopavogur, 

Iceland, 3 Landspitali, Palliative Care Unit, Kopavogur, 

Iceland 

Introduction: Bereavement follow-up has been a 

part of the service provided at the Palliative Care Unit 

(PCU) and Palliative Home Care Team (PHCT). 

Assessment of needs and support to families starts 

when the patient is admitted to the services and 

bereavement follow-up is provided throughout the 

first year. The aim is to provide support and 

information to families during their stay and prepare 

them for the death of their loved one. Furhermore to 

contact families after death to see how they are coping 

in their bereavement and provide support if needed. 

Method: Professionals have been searching for ways 

to identify individuals that are at a greater risk for 

bereavement-related distress. Specialized guidelines 

have been developed at Stockholms Sjukhem in 

Stockholm, Sweden to use to identify families that are 

at risk in the bereavement process. The guidelines 

were translated and are being implemented into the 

daily routines of the services. When admitted family 

members are invited to an inverview based on the 

Calgary Family Assessment and Intervention Model. 

The risk assessment is carried out and completed 

repeatedly during the stay. If risk factors are identified 

the multidisciplinary team outlines an intervention 

plan which is put into action. 

Results: The implementation process is ongoing and 

will be described together with an evaluation of the 

risk assessment factors. The purpose is to look at data 

collected from the period September 2010 to April 

2011. 

Conclusion: It is expected that the use of this 

assessment will be a valued contribution to the 

bereavement service with more focuse on families in 

need. 





Children´s View on Palliative Care 

Zavratnik B. 1 , Cervek J. 1 , Strancar K. 1 , Zagar T. 1 , Trontelj 

M. 2 

1 Institute of Oncology Ljubljana, Ward for Acute 

Palliative Care, Ljubljana, Slovenia, 2 University 

Medical Centre Ljubljana, Department of 

Gastroenterology, Ljubljana, Slovenia 

Aim: The main aim of this project was to see how our 

young ones (8-10 years old) see palliative care as it is 

being practiced as part of medical care. We wanted to 

see their ability of understanding the illness (cancer), 

how they experience it and for them to draw these as 

hand drawings. 

Method: After a rough division of the whole process 

of palliative care, from admission to discharge, we 

asked our volunteers to participate and they did. The 

volunteer who led a working shop at a primary school 

explained to the pupils about the cancer and the 

principle of palliative care. She also gave them an 

explanation of what we wanted them to draw. Later, 

we then digitalized these and inserted them into a 

poster, to which we added the titles and translations 

of comments from Slovene to English language. 

Results: The result is a poster, which is primarily the 

work of school children. Some of the pictures are 

clearly showing their insight view of our medical care. 

For example, a drawing which is showing us how the 

children are aware of the importance of medical care 

and that they understand that it is good for us, or a 

drawing which is showing us the importance of 

inclusion of children where a child has a chance to ask 

questions and to understand what is going on. There 

are many more details which are clearly showing 

what the children see and what is important to them. 

Conclusion: This project has shown us once again 

that children see, know and realize a lot more than 

what is believed by most people. That is one of the 

main reasons why it is important to include them in 

accompanying their loved one through the whole 

process of medical care. It is important to give them 

an experience and explain to them, what they have 

seen and witnessed as this can be an irreplaceable life 

experience for them, an experience which can make 

them grow and at the same time become aware of the 

fact that illness, as well as dying and death itself, are 

all a part of life through which everyone is or will be 

going. 



The Difficult Task of Being a Caregiver in 

Bulgaria 

Yordanov N. 1 

1 Interregional Cancer Hospital - Vratsa, Palliative 

Care, Vratsa, Bulgaria 

As home based palliative care are not well established 

in Bulgaria the major amount of care for terminally ill 

cancer patients lies on their families. We, for the first 

time in Bulgaria, interview caregivers about their and 

their patients’ needs of medical support. 

Aim: 

To find out according caregivers: 

The frequency and severity of the main symptoms 

experienced by their patients; 

How often caregivers need medical support; 

Where they ask for help when support is needed; 

Do they get support refusal and what were the reasons 

for that; 

Materials and methods: A qualitative, in-depth, 

face-to-face interview of a focus group - caregivers of 

cancer patients treated in the Interregional Cancer 

Hospital - Vratsa for the period 2008 - 2009. 

Results: 96 caregivers were interviewed. Over 75% of 

their patients experience more than one symptom, 

over 50% of patients experience these symptoms daily 

or several times in week (38%). 47% of the 

experienced symptoms caregivers assess as severe and 

higher. 42% of the caregivers feel unprepared to 

manage these symptoms. Almost all caregivers look 

for support from patients’ GPs, ER units or specialized 

cancer hospital. Caregivers (48%) consider patients’ 

GPs as not prepared to care for terminally ill cancer 

patients. 36% of the interviewed declare that GPs 

using different pretexts refuse palliative support. 54% 

of caregivers rarely or never asked for support from 

the ER units and 51% declare that are not satisfied by 

the support of the ER teams. 78% of the caregivers had 

look for support from the cancer hospital and in most 

cases 66% were satisfied the offered support. Almost 

all of the interviewed will take advantage of an open 

213 


(Friday)


(Friday) 


“hot phone line” and support the establishment of 

palliative home care teams. 

Conclusion: Being a caregiver is a difficult task. The 

development of support mechanisms for the 

caregivers will provide better care for their patients. 



Family Meeting - An Intervention Strategy 

Costa A.C. 1 , Pires A.R. 1 , Barroso R. 1 

1 Hospital Residencial do Mar, Unidade de Cuidados 

Paliativos, Bobadela, Portugal 

This communication presents the results of a 

descriptive qualitative study, describing and 

interpreting the content of the family meetings (FM) 

held at the Palliative Care Unit (PCU) between August 

2009 and August 2010. It is a characterisation study of 

the FM based on an analysis of the content of the 

parameterised report, used at these meetings. 

It is currently known that, in palliative care, in 

addition to symptom control, the greatest needs of 

patients and families is communication, this makes 

communication skills an important factor in the 

quality of care in terms of continuous interaction 

patient/family/team. 

According to specialized literature, the FM should be a 

structured form of intervention with the family and is 

useful to clarify the objectives of the care to be 

provided, to solve problems, to reach a consensus and 

offer support and advice to patients and their families. 

The documentary analysis carried out allowed us to 

describe the reality of the FM at our PCU, namely in 

the following areas: identification of the most 

frequent objectives, active problems and consensuses 

reached to build the individual care plan (key topics 

in the FM reports). 

The thematic content analysis technique was used to 

process the data, from a diverse set of categories and 

subcategories, built by simultaneously deductive and 

inductive approaches, analysing all of the FM 

conducted during the recommended time, on a total 

of 29 reports. 

Results standing out from this study: 

Most frequent objectives - validate expectations and 

provide information on the prognosis/diagnosis; 

Prevailing active problems - problems related to the 

controlling of symptoms, the worsening of the 

clinical situation, the difficulty in accepting the 

prognosis and the loss of autonomy; 

Main consensuses reached for the planning of the 

intervention are based on the following key areas - 

family support, caring for comfort and symptoms 

control. 


Withdrawn 



Caring for Patients in End of Life: The 

Perception of Portuguese Family Doctors 

Oliveira J.E. 1 , Ribeiro Pereira E.M. 2 , Sá A.B. 3 

1 Portuguese Institute of Oncology, Palliative Care 

Service, Porto, Portugal, 2 Institute of Education and 

Psychology, Minho University, Braga, Portugal, 

3 Faculty of Medicine of the University of Lisbon, 

Lisbon, Portugal 

Background: Most patients at the end of life need 

medical home care. There is scarce information on the 

experience of Portuguese family physicians caring for 

these patients. 

Objective: This study aims to understand how 

Portuguese family physicians perceive the experience 

of caring for patients and families in the end of life. 

Methods: We performed a qualitative study using 

semi-structured interviews with a sample of eight 

family physicians with experience in follow-up of 

patients in the end of life. The interviews were audio 

taped, transcribed and analysed according to the 

procedures of “grounded theory”. 

Results: Four domains emerged from the reports of 

family doctors. The intrinsic factors influencing how 

the physician deals with patients in the end of life are 

related to training in palliative care, personal 

motivation and the relationship with the patient and 

family. The extrinsic factors of influence relate to 

organizational conditions, attitudes of other 

professionals and social-familial conditions. 

Physicians characterize their experience describing 

the perception of personal performance, subjective 

appraisal and personal feelings aroused by the 

experience. The characterization of the patient and 

family experience reported by doctors refers to the 

condition of the patient, description of the 

circumstances of his death and attitudes and 

perceptions of the patient and family. 

Conclusion: The experience of caring for patients in 

the end of life is seen by family physicians as 

challenging, rewarding and determined by a complex 

system of personal conditions, training, relational, 

structural and social-familial factors. Family 

physicians can improve patient care at the end of life 

through personal training in palliative care, working 

with nurses and hospital doctors, availability of 

human resources and materials and time to do home 

visits. 



A Systematic Review of Advanced Cancer 

Patients’ Experiences of Symptom Control 

Trials 

Middlemiss T.P. 1,2 , Laird B.J. 1,3 , Fallon M.T. 1 

1 University of Edinburgh, Department of Palliative 

Medicine, Edinburgh, United Kingdom, 2 St Andrew’s 

Hospice, Airdrie, United Kingdom, 3 Norwegian 

University of Science and Technology, European 

Palliative Care Research Centre, Trondheim, Norway 

Introduction: Research in palliative care remains 

contentious. It has been argued that it may be 

unethical to conduct research in this vulnerable 

population. This has been compounded by poor 

quality research and small inclusion numbers in 

symptom control trials. High quality international 

clinical trials in advanced cancer are now taking place. 

It is not known what patients’ experiences are of 

participating in these symptom control trials. This 

systematic review examines patients’ experiences of 

symptom control trials. 

Methods: Medline and Embase were searched from 

1988 to present. Three search arms were used; ‘cancer’ 

AND ‘trial’, ‘cancer’ AND ‘research’, and ‘cancer’ AND 

‘study’. Each of these arms was then subsequently 

searched using ‘palliative’, ‘supportive’, ‘opinions’, 

‘experiences’ and ‘attitudes’. All papers’ titles were 

reviewed with potential papers reviewed in full. 

Eligible papers had to examine the experiences of 

patients with advanced cancer who had participated 

in symptom control trials. 

Results: 46735 titles were reviewed of which 43 

papers were fully examined. None of these papers met 

the inclusion criteria after appraisal. The commonest 

reasons for exclusion were either trials of 

chemotherapy agents or studies in which patients 

were asked opinions on participating in hypothetical 

research rather than actual experiences. 

Conclusions: There are no studies which examine 

the experiences of patients with advanced cancer who 

have participated in symptom control trials. Any 

belief that such patients do not want to participate in 

symptom control research has no robust evidence 

base. There is a need to explore the experiences of 

palliative patients who have taken part in clinical 

trials. This would be an important step in tailoring 

symptom control trials to meet the needs of advanced 


Funding: Jointly funded by a university grant and an 

award from a specialist palliative care unit. 



Medical End-of-Life Decisions in Belgium: A 

Review of the Literature 

Andrew E.V.W. 1 , Evans N. 1 , Meñaca A. 1 , Cohen J. 2 , 






Barcelona (CRESIB), Barcelona, Spain, 2 End-of-Life 

Care Research Group, Vrije Universiteit Brussel, 

Brussels, Belgium, 3 King’s College London, 


Rehabilitation, Cicely Saunders Institute, London, 


Background: Aging populations and development 

of life-sustaining medical technology increasingly 

force healthcare professionals to make medical endof-life 

decisions (MELDs). Norms in law and practice 

regarding MELDs are influenced by diverse cultural 

and historical contexts. Belgium is one of few places 

where active euthanasia is legal. The effect of the 

euthanasia law and other MELDs on end-of-life (EoL) 

care is a key research interest in Belgium. 

Methods: Literature review. Studies on MELDs in 

Belgium, identified from a literature scoping of 

culture and EoL care in Belgium (in 8 electronic 

databases, 5 journals, reference lists, and grey 

literature) were included. Qualitative meta-synthesis 

was used to identify cross-cutting themes. 

Results: Fifty studies (77% quantitative) were 

included. Key themes were: definitions, incidences, 

decision-making processes, roles of healthcare 

professionals, application of laws, and healthcare 

institution written ethics policies (WEPs). The types of 

MELDs were carefully categorized. Since the 

euthanasia law there has been an increase in 

continuous deep sedation, possibly life-shortening 

pain and symptom alleviation and in reported 

euthanasia but a decrease in life-ending without 

explicit request. Despite the importance of discussing 

patients’ wishes regarding the EoL, possible MELDs 

were not discussed with 20-75% of patients or their 

relatives (though euthanasia was always discussed). 

Nurses played an important role throughout the 

process of MELDs because of close relationships to 

patients. WEPs shaped how euthanasia played out in 

practice, helping ensure patients received quality 


Conclusion: These literature findings document the 

context within which MELDs occur in Belgium. 

Palliative care has developed alongside legal 

euthanasia, providing an example for the 

international community of how these seemingly 

opposing concepts can co-exist and contribute to the 

continual reassessment of best-practice for EoL care. 



Terminal Phase of Cancer Disease: Results of 

Principal Clinical and Psyco-sociologic 

Aspects Involving Patients and Caregivers 

Buda F. 1 

1 City of Udine Hospital and Geriatric Oncology, 

Postgraduate School fo Geriatry, University of Udine, 

Internal Medicine-Medical Oncology, Udine, Italy 

Cancer patients at a terminal stage of disease are 

suffering a global psychophysical situation,since in 

addition to clinical symptoms they progressively 

loose autonomy,pain involving also family 

caregivers,whose assistance effort undermines their 

social and job relationship network and their 

psychophysical balance as well. 

Scope: To evaluate in cancer patients at terminal 

stage the consciousness of global psychophysical 

status and in family caregiver consciousness of 

diagnose and prognosis, together with psycho-social 

burden connected with curative role. 

Method: From March 2007 to February 2009,by 

means of anonymous questionnaires and interviews 

made by our team,122 patients with cancer in 

terminal stage and 150 caregivers have been 

evaluated. 

Results: Among enlisted patients(aged 69.3 

±10.4)the 96% was supported by one caregiver at 

least(76% women,24% men,average age 51.4 years 

old ±11.8 years old); only for 4% of the cases, patients 

were supported by social service.Knowledge of disease 

stage was present for 41.5% of cases where 25.6% 

demonstrated consciousness of prognosis;on the 

other side the 18.4% demonstrated not to have 

consciousness of disease showing positive expectation 

about its evolution.27.2% of patients had a mood 

apparently adequate to the clinic contest,46.9% was 

in a depression and 25.9% showed anger,hostility and 

refusal.psychophysical The disease of the relative 

influenced negatively on relationship life of the 

caregiver in 74% of the cases, on familiar life in 

79.6%,on job and economic life in 52.4% and on 

psychophysical welfare in 65.8% of the cases. 

Conclusions: The results highlighted the psychosocial 

complexity of terminal patient and his 

family,where role of medical and nursing team is 

based on delicate communication and relationship 

variables and it needs a constant calibration on the 

uniqueness of each single patient and caregiver. 




Systematic Review of Reviews of End-of-Life 

Care for Minority Ethnic Groups in the UK and 

a Critical Comparison with Policy 

Recommendations from the UK End-of-Life 

Care Strategy 

Evans N. 1 , Meñaca A. 1 , Andrew E.V.W. 1 , Koffman J. 2 , 

Harding R. 2 , Higginson I. 2 , Pool R. 1 , Gysels M. 1 , on behalf 










Background: Evidence of low palliative care service 

use by minority ethnic groups in the UK has given rise 

to research into ethnicity and end-of-life (EoL) care 

and a number of reviews of the literature. 

Aim: To systematically review the reviews of the 

literature concerning minority ethnic groups and EoL 

care in the UK and assess their suitability as an 

evidence base for policy. 

Methods: Systematic review. Searches were carried 

out in thirteen electronic databases, eight journals, 

reference lists, and grey literature. Reviews were 

included if they concerned minority ethnic groups 

and EoL care in the UK. Reviews were graded for 

quality and findings were subjected to a qualitative 

meta-synthesis. 

Results: Twelve reviews, published 2001-2009, met 

the inclusion criteria. Six followed a systematic search 

procedure and were, on average, of reasonable quality. 

Qualitative meta-synthesis revealed six themes: 

structural inequality; inequality by disease group; 

referrals; place of care and death; awareness and 

communication issues; and, cultural competency. 

Reviews varied in approach and quality. Potential 

sources of bias include: the inclusion of narrative 

(non-systematic) reviews, the narrow focus of some 

reviews and publication bias. 

Conclusion: The complexity and inter-relatedness of 

factors leading to low service use was recognised and 

reflected in the reviews’ recommendations for service 

improvement. Systematic reviews were of reasonable 

methodological quality and provided a fair reflection 

of the literature for policy. Recommendations made 

in the UK End-of-Life Care Strategy were limited in 

comparison, and the Strategy’s evidence base 

concerning minority ethnic groups was very 

restricted. Future policy should be embedded strongly 

in the evidence base to reflect the current literature 

and minimise bias. 



Donation of the Cornea in the Context of 


Annweiler B. 1 

1 Helios Kliniken Schwerin, Palliativzentrum, 

Schwerin, Germany 

In Germany the explantation of the cornea is ruled of 

the “Law of Transplantation 2007”.The explantation 

is possible if the donator himself did agree. If the 

deceased person did not mention anything about 

donation of organs, a loved one has to decide.This is 

often a very difficult decision. 

In many institutions particularly in palliative care 

units the fact of donation of organs is not 

communicated to the very ill persons. They should 

not be stressed. So the loved ones are stressed just 

about the moment after death did happen. 

Why do we stress the loved ones and not the dying? 

We discussed this question in our palliative care team 

(PCT) and found out: we are angry to talk about this 

topic. 

Changement was required. 

Method: Gathering information about law and 

contraindications. 

How is an explantation operated? 

Does it really disturb the last fare well? 

How are we able to talk to the very ill about this 

difficult topic for us? 

Process: Information on the ward - flyer and 

standard form for donation of organs are available 

Assessment of a new patient - Questions about form 

for donation or advance directive, thinking about 

donation of organs. 

PCT is educated in talking to the very ill and their 

loved ones about the topic. 

Conclusion: After 3 years experience in 

communication about this difficult topic to the very 

ill and their loved ones we document about each 

patient one of the following points: 

1. Donation of the cornea - decision yes 

2. Donation of the cornea — decision no, because of… 

3. Donation of the cornea - decision no, because of the 

following contraindication 

In 2010 every 5th deceased person has been a 

donator. 

About 50% had a contraindication like metastasis of 

the brain, motor neuron disease 

or sepsis. 

In about 25 % the decision was: no. 

If loved ones had to decide, most of the time they 

decided: no. Patients themselves 

decided : no, because of fear to loose the eyelight or 

because of religious reasons or to like to get their corps 

intact. 



Diagnosing Terminality in Non-oncological 

Disease 

Expósito López A. 1 , Romaní-Costa V. 1 , Mañas Magaña 

M. 1 , Gómez Enrich N. 1 

1 Hospital Universitari Mútua Terrassa, Universitat de 

Barcelona, Geriatrics and Palliative Care Unit, 

Terrassa, Spain 

Aims: In order to improve care in patients with 

advanced chronic organ failure (ACOF), their doctor 

must be fully aware of this diagnosis. A screening 

program for these patients and raising awareness 

among their doctor have been initiated. 

Methods: Analysis of medical records of all patients 

admitted to non-surgical services in an acute care 

hospital. The Medical Guidelines for Determining 

Prognosis in Selected Non-Cancer Diseases of the 

National Hospice and Palliative Care Organization 

(NHPCO) was used to select patients with ACOF. 

Physicians whose cases met NHPCO guide specific 

criteria were interviewed. An analysis of medical 

records the day after the interview was carried out to 

assess changes in diagnosis, prognosis and therapeutic 

plan. 

Results: Patients evaluated for a week were 93. 

Eighteen (19.4%) fulfilled the 3rd general criteria and 

some specific criteria of the NHPCO: 5 for heart 

failure, 4 for pulmonary disease, and 9 for 

neurological disease. There was no reference to the 

prognosis or the limitation of therapeutic efforts in 

the records of them. Doctors of 18 cases were 

interviewed, and 14 commented on not being 

surprised if their patients died in the next six months. 

In 6 of these 14 cases, doctors said they had informed 

the family of this intuitive prognosis, but in any case 

the patient. The day after the interview, changes were 

detected in the therapeutic attitude in the history of 

10 patients (55.5%): in 7 cases the doctor noted the 

ongoing clinical diagnosis of very advanced disease 

and poor prognosis, in 5 cases an advance care plan in 

case of exacerbation was performed, and 5 changed 

the therapeutic plan prioritizing the control of 

symptoms. 

Conclusion: One out of every 5 patients admitted to 

hospital have an ACOF and is probably in his last 

months of life. 

The interview with the doctor induces reflection and 

diagnosis reorientation, hence becoming a good tool 

to improve the care of these patients. 



Head-to-Head Comparison Study of Fentanyl 

Buccal Tablet vs Immediate-release 

Oxycodone for Breakthrough pain 

management in Opioid-tolerant Chronic Pain 

Patients 

Varrassi G. 1 , Ashburn M.A. 2 , Slevin K.A. 3 , Narayana A. 4 , 

Xie F. 4 , Amores X. 5 

1 L’Aquila University, Department of Anesthesiology 

& Pain Medecine, L’Aquila, Italy, 2 Hospital of the 

University of Pennsylvania, Philadelphia, PA, United 

States, 3 University of Pennsylvania, Philadelphia, PA, 

United States, 4 Cephalon Inc, Frazer, PA, United 

States, 5 Cephalon, Maisons-Alfort, France 

Limited data exist comparing short-acting opioids to 

rapid-onset opioids for the treatment of breakthrough 

pain (BTP). This study compared fentanyl buccal 

tablet (FBT) with immediate-release oxycodone 

(OxyIR) for BTP chronic pain patients. Design: 2 



randomized, open-label titration periods and 2 

randomized, double-blind, double-dummy treatment 

periods. Opioid-tolerant adults with 1-4 BTP 

episodes/day titrated FBT and OxyIR to a successful 

dose providing adequate analgesia without 

unacceptable adverse events (AEs). FBT doses were 

200, 400, 600, 800µg & OxyIR 15, 30, 45, 60mg. 

Efficacy was evaluated by treating 10 BTP episodes 

with the successful dose for each drug. Pts rated BTP 

(pain intensity [PI], 0-10 scale) pre dose & 5-60 min 

post dose. The primary outcome was mean PI 

difference at 15 min (PID 15 ). Secondary measures: PID 

5-60 min, pain relief (PR; 0-4 scale, 5-60 min), & 

medication performance assessment (MPA; 5-level 

categorical scale) at 30 & 60 min. 320 patients 

received treatment, 183 were evaluable for efficacy. 

During titration, 60 pts discontinued while receiving 

FBT and 69 OxyIR, with similar discontinuation 

reasons. There was no linear relationship btw the 

successful dose of FBT or OxyIR & the ATC opioid 

dose. FBT was superior to OxyIR with statistically 

significant differences for primary efficacy measure 

(PID 15 0.82 vs 0.59; p< 0.0001) & most secondary 

measures (PID 5-60 min [P< 0.01], PR10-60 min [P< 

0.05], MPA [P< 0.0001]). 51% patients reported AEs, 

similar between treatments. Conclusion, the onset of 

efficacy was faster for FBT with an analgesic effect 

observed as early as 5 min & similar tolerability 

profile. (Cephalon Inc Sponsored) 



Providing Good End of Life Care in Dementia: 

The Views of Health Care Professionals 

Working in New Zealand 

Bellamy G. 1 , Ryan T. 2 , Gott M. 1 


Auckland, New Zealand, 2 University of Sheffield, 

School of Nursing and Midwifery, Sheffield, United 


Research aims: International evidence suggests that 

end of life care for individuals with dementia remains 

poor. This paper identifies key issues in the provision 

of good quality palliative and end of life care for 

people with dementia drawing upon data collected in 

New Zealand. It utilises the views and experiences of 

health care professionals to explore the barriers to, 

and the means by which optimum end of life care can 

be achieved for this increasing population. 

Study design and methods: The project explored 

how transitions to palliative care are managed; a 

specific set of questions were posed around care for 

people with dementia. A qualitative study design was 

adopted. Eighty health care professionals regularly 

involved in caring for older people took part in ten 

focus groups and two joint interviews. Participants 

were recruited from primary (n=12), secondary (n=38) 

and residential care (n=30) organisations in Auckland, 

New Zealand. Focus groups and interviews were 

recorded and transcribed verbatim and analysed using 

the principles of thematic analysis. 

Results: The presentation will focus upon a number 

of key themes, including: 

The importance of developing and maintaining an 

approach to care which acknowledges the importance 

of non-verbal forms of communication 

Strategies for ‘knowing’ the patient and advocated on 

their behalf within the context of dementia 

The role of family/whanau (Maori word for family) in 

advocating for the appropriate care and treatment of 

the person with dementia 

The importance of partnership working to achieve 

optimum care for individuals with dementia 

Conclusion: The active involvement of all parties 

and attention to their needs is central to the provision 

of good quality palliative care for patients with 

dementia. Whilst care staff can work together with 

family/whanau to advocate on behalf of the patient, it 

is important that they have a shared vision and agreed 

values to underpin care and treatment. 



Family Care Givers Assessments of Symptom 

Prevalence and Palliative Care Needs in 

Patients with Parkinson’s and Related 

Neurological Conditions Attending a 

Specialist Neurology Centre in UK 

Saleem T.Z. 1 , Higginson I.J. 2 , Martin A. 3 , Chaudhuri R. 3 , 

Leigh N. 4 


Palliative Care, Policy & Rehabilitation, London, 

215 


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United Kingdom, 2 Cicely Saunders Institute, Palliative 


Kingdom, 3 King’s College Hospital, London, United 



Background: Few patients and their family 

caregivers affected by Parkinson’s disease (PD) and 

related movement disorders (MSA ,PSP) have access to 

palliative care services. There is a paucity of studies 

using palliative care assessment tools in this 

population. 

Aims: This study sought to assess physical symptom 

prevalence and wider concerns (psychological, social, 

practical and information needs) of family caregivers 

living at home with partners with advanced 

Parkinsonism. 

Methods: Data was collected on symptoms and 

concerns of patients from the perspective of their 

family caregivers for the past two week period in face 

to face interviews at home. Standardised 

questionnaires including carer version of Palliative 

Care Outcome scale (POS) and POS-S were completed 

by family caregiver. 

Results: Fifty five (55) family caregivers were 

included, mean age 64 years, most were partners 

(husband or wife) 91% and female 56%. Caregivers 

reported a mean of 12 physical symptoms. Six 

symptoms affected more than 80%: problems using 

legs and arms, fatigue, pain, feeling sleepy and 

difficulty communicating. Whilst eight further 

symptoms: problems swallowing, difficulty sleeping, 

mouth problems, constipation, cramps, 

breathlessness, urinary problems and falls were 

reported in over 50% and under 80%. Three 

symptoms of bowel problems, poor appetite and 

hallucinations occurred in between 30% to 50%. 

Nausea, vomiting and pressure sores were reported in 

less than 30%. Over 70% said their partners had 

anxiety and depression. The mean POS score was 

moderate 14.2 (S.D = 6.2). 

Conclusions: Family caregivers are having to cope at 

home with caring for patients with advanced PD with 

high symptom burden and care needs. Assessing 

family perspective of needs of their loved ones can be 

achieved by using POS. Neurologists, PD nurse 

specialists and palliative care teams need to work 

together to improve the management of the 

symptoms burden and improve quality of life for both 

patient and families. 



Demand for Advance Directives in Patients 

with Acute Cardiac Disease 

Kierner K.A. 1 , Beke D. 2 , Masel E. 1 , Watzke H. 1 

1 Medical University of Vienna, Vienna, Austria, 2 KH 

Barmherzige Brüder Wien, Vienna, Austria 

Background: The purpose of advance directives 

(AD) is to preserve autonomy of patients at the end of 

life. We investigated attitudes towards issuing AD in 

hospitalized patients with acute cardiac disease in a 

prospective cohort study 

Materials and methods: One hundred consecutive 

patients (39 women, 61 men; age: 69.5 +/- 14.9 years) 

who were hospitalized for acute cardiac disease 

(cardiac ischemia, cardiac insufficiency, arrhythmia) 

completed the study. They were informed upon entry 

in the study about the nature of AD by the study 

physician following a standardized protocol. Their 

median New York Heart Association (NYHA) score 

was 3 (Range: 1-4). 

Results: Only 2% of patients already had an AD. 

Thirty-three percent indicated that they would want 

to make an AD while 65% did not want to issue one. 

The latter felt that issuing an AD was either not an 

important topic at the moment for them (82%), 

trusted their physician to take proper care for their 

end-of-life decisions (9%) or wanted additional 

information mainly regarding costs (9%). Four 

percent mentioned ethical reservations and 2% were 

afraid of making a wrong decision. The patient’s 

decision was not related to a specific cardiac diagnosis 

or to a number of socio-demographic variables or to 

results from the Hospital Anxiety and Depression 

Score (HADS-D) 

Conclusion: Our data reveal that prevalence of AD 

and demand for issuing an AD are very low in our 

population of patients hospitalized for acute cardiac 

disease. It is interesting to note that demand for 

issuing an AD was found to be even lower in our 

preceding study on cancer patients (10% vs 33% in 

the current study). 1 

1K.A.Kierner et al. Support Care Cancer 18:367-72, 

2010 



Palliation in Motor Neurone Disease - The 

Experience of UK Neurologists 

O’Neill C.L. 1 , Williams T.L. 2 , Peel E.T. 3 , McDermott C.J. 4 , 

Shaw P.J. 4 , Gibson G.J. 2 , Bourke S.C. 3 

1 St. Oswald’s Hospice, Newcastle-upon-Tyne, United 

Kingdom, 2 Newcastle Hospitals Trust, Newcastleupon-Tyne, 

United Kingdom, 3 North Tyneside 

General Hospital, Newcastle-upon-Tyne, United 

Kingdom, 4 Academic Neurology Unit, Royal 

Hallamshire Hospital, Sheffield, United Kingdom 

Background: Motor Neurone Disease (MND) is an 

incurable, degenerative condition that leads to death, 

usually due to respiratory failure. Evidence supports 

the use of non-invasive ventilation (NIV) in MND to 

improve symptoms, quality of life and survival. Our 

objectives were to evaluate current UK practice; to 

assess whether neurologists are accessing specialist 

palliative care (SPC) services, to determine measures 

utilised by neurologists in the palliation of advanced 

MND. 

Methods: We conducted a postal survey of the 

clinical application of NIV in MND, which was sent to 

all UK neurologists in 2009. 

Findings: 62.8% neurologists responded. Of these 

166 saw MND patients in their usual practice. Over 

the previous 12 months, 612 patients were referred for 

NIV; 444 were successfully established on NIV (72.5% 

success rate). At the end-of-life (EoL), 75% of 

neurologists access SPC services and refer 58% of their 

patients. Prior to the EoL the proportion of 

neurologists accessing SPC services (69%) and the 

proportion of patients referred (48%) was only 

slightly lower. 

At the EoL opioids were used most commonly. 

Benzodiazepines and oxygen (O 2 ) were used in almost 

half of patients. For symptomatic patients prior to EoL 

in whom NIV was inappropriate or not tolerated, O 2 , 

opioids and benzodiazepines were used. 

Pharmacological measures were used less commonly 

in symptomatic patients prior to EoL. Prior to a NIV 

trial, O 2 was used by 26% neurologists. 

Interpretation: There has been an increase in the 

number of MND patients referred for & receiving NIV. 

Palliative measures provided directly by the attending 

neurologist, include the provision of measures to 

supplement NIV or to improve symptoms in patients 

in whom NIV is inappropriate or not tolerated. A 

significant proportion of neurologists also use 

palliative measures earlier in the disease trajectory. Of 

concern, uncontrolled O 2 is being used 

inappropriately in patients prior to EoL in whom NIV 

has not yet been considered. 



Model for Advanced Home Care to Patients 

with Moderate to Severe Heart Failure 

Sundberg M.E. 1 , Söderberg A. 2 

1 ASIH, Långbro Park, Stockholm, Älvsjö, Sweden, 

2 Stockholms Lans Landsting, Langbro Park ASIH, 

Alvsjo, Sweden 

Background: Patients suffering from moderate to 

severe heart failure are often hospitalized due to 

deterioration. During end-of-life patients with heart 

failure receive much less palliative care than cancer 

patients do and they often die in the hospitals in 

acute care settings. 

Aim: To describe an organizational model for 

advanced home care to patients with moderate to 

severe heart failure. 

Method: The model has been developed by a 

multidisciplinary home care team. The model is based 

on an individualised assessment of the patientsńeeds 

for care and follow up at three levels.Level one 

involves visits once or more than once a day. Level 

two include a visit every 4 weeks and level three every 

8 weeks.The home care team is available 24 hours a 

day, 7 days a week if the patients´s heart failure status 

deteriorates. The care is flexible and planned in 

colloboration with the patient and his/her family. 

The patient´s heart failure status is evaluated using a 

checklist, wich addresses medical needs and patient 

care status. if necessary patients get intermittent 

injections or infusions of Furosemide at 

home.Infusions using portable pumps allow patients 

the freedom to move both within and outside the 

home. Patients in need of palliative care can receive 

home care in accordance with the model until their 

death. 

Conclusion: The model has now been implemented 

and used in clinical practice during the last 3 years. 

This model of home care is feasible, patient centered 

and safe, it has improved patient and family 

satisfaction with care and reduced hospital 

costs.Patients perceive the individualized education as 

stimulating. Family member appreciate the emotional 

support from the nurses. Care available at all times 

without interruption gave both patients and family 

members feelings of safety and security. 

During interviews with the deceased patients´families, 

they expressed satisfaction with the palliative heart 

failure care provided by the home care team. 



Parkinson’S Disease, Progressive 

Supranuclear Palsy and Cortico-basal 

Degeneration - Disorders with Impications for 


Lorenzl S. 1 , Welponer H. 2 , Hensler M. 2 

1 University of Munich, Palliative Care and Neurology, 

Munich, Germany, 2 University of Munich, 

Department of Palliative Care and Neurology, 

Munich, Germany 

Context: Progressive supranuclear palsy (PSP) and 

corticobasal degeneration (CBD) are rare diseases. 

Patients with Parkinson’s disease (PD) have a higher 

number of people affected but are rarely admitted to a 

palliative care unit. Therefore, we analyzed 

prospectively the admission of patients with 

Parkinson, PSP and CBD to a palliative care unit to 

document the symptoms and treatment options. In a 

scound part we retrospectively and prospectively 

analyze the places of death of these patients and the 

symptoms in their last days of life. 

Design: Prospective evaluation of patients with PD, 

PSP and CBD admitted to our palliative care unit from 

May 2006. The secound study retrospectively (starting 

from 2005) and prospectively investigates the places 

of death and the symptom load in their last days of 

life in hospitals, nursing homes, palliative care units 

and hospices in Munich. 

Results: Within these two years 26 patients with 

Parkinsonian disorders were admitted: 20 diagnosed 

with PSP, 3 with PD and 3 with CBD. The most 

common reasons for admission were pain (n = 7), 

diarrhoea/obstipation (n = 6) and swallowing 

difficulties (n = 5). Five patients died during the time 

spent at the palliative care unit.From the secound part 

of this investigation we have preliminary results, 

which indicate that patients with PD mostly spend 

their last days of life in hospitals and nursing homes 

and PSP patients mostly in hospitals and nursing 

homes. Data of CBD patients are lacking due to the 

diagnosis often not reported. 

Conclusion: The number of PD patients admitted to 

a palliative care unit is lower as compared to PSP 

patients. This might be due to a more rapid disease 

progression in PSP and more palliative care need 

throughout the disease. Only a few PD patients are 

dying at home, most often in hospitals and nursing 

homes. Therefore, we suggest that more patients with 

PD and atypical Parkinsonian disorders should be 

admitted to palliative care units in advanced stages of 

their diseases. 



Head-to-Head Comparison Study of Fentanyl 

Buccal Tablet vs Immediate-release 

Oxycodone for the Management of 

Breakthrough Pain in Opioid-tolerant 

Patients with Chronic Pain 

Varrassi G. 1 , Ashburn M.A. 2 , Slevin K.A. 2 , Narayana A. 3 , 

Xie F. 3 , Amores X. 4 

1 University of L’Aquila, Department of 

Anesthesiology & Pain Medecine, L’Aquila, Italy, 

2 University of Pennsylvania, Philadelphia, PA, United 

States, 3 Cephalon Inc, Frazer, PA, United States, 

4 Cephalon, Maisons-Alfort, France 

This study compared the efficacy and safety of 

fentanyl buccal tablet (FBT) with immediate-release 

oxycodone (OxyIR), followed by a randomized, 12week 

open-label period comparing the effect of FBT to 

short-acting opioids. Opioid-tolerant adults with < 5 

breakthrough pain (BTP) episodes/day were enrolled. 

Design: 2 randomized, open-label titration periods 

and 2 randomized, double-blind, double-dummy 

treatment periods. FBT & OxyIR were titrated to a 

successful dose (adequate pain relief (PR) for at least 2 

of 3 BTP episodes without unacceptable adverse 


events [AEs]). Patients treated the first 10 BTP episodes 

with 1 study drug & the following 10 BTP episodes 

with the other study drug. The primary efficacy 

measure was mean pain intensity difference at 15 min 

(PID 15 ). Secondary measures: PID 5-60 min, pain relief 

(PR) 5-60 min & medication performance assessment 

(MPA; 5-level categorical scale) at 30 & 60 min. 211 

patients received treatment, 137 were evaluable for 

efficacy. PID 15 was significantly greater for FBT vs 

OxyIR (0.88 vs 0.76; P=0.0004), with statistically 

significant differences for PID from 10 min until 60 

min (P< 0.05). PR was significantly greater for FBT vs 

OxyIR from 15 to 60 min (P< 0.05). MPA was 

significantly better for FBT at 30 & 60 min (P< 0.0001). 

Including the 12-week open-label period, 62% 

patients reported AEs, similar between treatments. 

This study shows faster onset of efficacy in favor of 

FBT for the BTP treatment in chronic pain opioidtolerant 

patients; tolerability profiles were generally 

similar (Cephalon Inc Sponsored Study). 



Analysis of the Papscore as a Predictor of 

Survival in Non-cancer Patients in a Palliative 

Care Support Team: A Prospective 

Observational Study 

Pérez Aznar C. 1 , Sánchez Isac M. 1 , Recio Gállego M. 1 , 

Núñez Olarte J.M. 1 , Cantero Sánchez N. 1 , Guevara 

Méndez S. 1 , Solano Garzón N. 1 , Conti Jiménez M. 1 , 

Manchado Garabito R. 1 



Objectives: To analyse the predictive accuracy of the 

Palliative Prognostic Score (PaPscore) in non cancer 

patients referred to a palliative care hospital support 

team. 

Patients and methods: From a group of 94 

consecutive non cancer patients evaluated from 

February 2007 to August 2009 we analysed a subgroup 

of patients (49) who achieved clinical criteria of 

terminal illness and had been assessed with PaPscore. 

This score subdivided them into three specific risk 

classes that predict 30 days survival. All patients were 

followed for a year. A survival analysis was performed; 

the Kaplan-Meier method and log-rank test were used 

to compare survival distributions for patients in the 

three groups. We also compared the prognosis 

survival given by the PaPscore with the real survival. 

Results: 49 patients were included. 43 % of the 

patients were men and 57% were females. 96% of the 

patients died along the first year and 73% of them 

during the first month. The following diseases were 

assessed: Congestive Heart Failure, Dementia, 

Chronic Obstructive Pulmonary Disease, 

Amyotrophic Lateral Sclerosis, End stage Liver Disease 

and End Stage Renal Failure. Median survival was 91 

days in group A (with a 75% probability of 30 days 

survival), 11 days in group B (with a 23 % probability 

of 30 days survival), and 5 days in group C (with a 21 

% probability of 30 days survival). For a PaPscore of 

9,5 points we found a sensibility of 83%, a specificity 

of 46%, a negative predictive value of 50% and a 

positive predictive value of 81%. 

Conclusion: In the complex process of establishing 

short term prognosis in terminal ill non cancer 

patients, the PaPscore was able to subdivide them in 2 

groups. Although the results were not statistically 

significant, probably due to the small number of 

patients in group A, they seem to be clinically relevant 

for our daily practice. Further research with a larger 

sample is nowadays being completed by our group. 



Advanced Heart Failure and Palliative Care: 

Implementing the Care and Cure Model 

Bharadwaj P. 1 , Shinde A. 1 , Baraghoush A. 1 , Phan A. 1 , 

Schwarz E.R. 1 

1 Cedars- Sinai Medical Center, Los Angeles, CA, 

United States 

Background: Heart failure (HF) is a chronic 

progressive disease associated with a high morbidity 

and mortality. Around 5.8 million people in the 

United States suffer from this disease. 

Research objectives: To study the outcomes, 

benefits and impact of introducing a palliative care 

consultation service in the care of patients with 

advanced HF. 

Methods: A palliative care consultation was obtained 

by the HF team for one or more of the following: 

symptom management, advance care planning, 

clarification of goals, support to patients and families 

and end of life care/hospice referral. The experience 

was studied. 

Results: Data of the first 20 patients referred by the 

HF service at Cedars Sinai Medical Center to the 

palliative care consultation service was analyzed. 2 

patients received a successful heart transplant. 3 

patients received an LVAD as destination therapy. 

BIVAD was placed in 1 patient as a bridge to 

transplant. 4 patients had received a heart transplant 

in the past. 5 patients were identified as not being a 

candidate for a heart transplant. 2 patients were 

discharged home on hospice and 2 patients received 

end of life care in the hospital. 

Valuable feedback was reported by the HF service, 

patients and their families. The HF service observed 

that the involvement of palliative care improved 

patient care and transition, a surprising decrease in 

the use of opioids and improved efficiency of their 

service. Patients and families reported better 

symptom control and improved planning of course of 

treatment. This experience has changed the 

perception of palliative care involvement-not being 

limited solely to end of life care. 

Conclusion: Palliative care is an integral part of 

providing comprehensive care to patients with 

advanced heart failure. Its involvement should be 

independent of the prognosis or treatment goal. 

Implications for research, policy, or practice: 

Palliative care should be the standard of care in this 

patient population. 



Advance Care Planning (ACP) for Patients 

with Chronic Heart Failure (CHF): Practice by 

Cardiologists and General Practitioners in 

Belgium 

Van den Eynden B. 1,2 , Van Immerseel A. 1 , Leysen B. 1 



Background: Patients with CHF are confronted 

with an unpredictable prognosis and with a great 

tendency to have other disabilities. That is why 

doctors should ask these patients questions like 

‘Would you prefer to start or stop any therapy? In 

which circumstances would you like to die?’ 

These questions are part of ACP, an approach of 

shared decision making early in the course of 

incurable diseases. Doctors and patients try to make 

commitments about therapeutic choices in case of 

possible clinical situations. These choices are patientcentered 


Aim: ‘When and how do cardiologists and general 

practitioners in Belgium apply ACP for patients with 

CHF?’ 

Method: The researchers used semi-structured indepth-interviews, 

studying the practice of 10 general 

practitioners and of 10 cardiologists. They asked the 

doctors how many files they have of patients with 

CHF and more details about when and how they 

apply ACP with respect to those patients. They used 

an inquiry to conduct 20, often very personal, 

interviews. Those interviews were recorded on tape 

and then transcribed. 

After the transcription, both researchers wrote a code 

book, by extracting topics from the interviews. They 

wrote a common code book, combining both 

perspectives. It described the doctors’ opinions about 

every topic. By using the code book, an overall 

analysis was made. 

Results: Many barriers were identified to apply ACP 

well. Doctors are afraid to depress patients when 

talking about a bad prognosis. Some cardiologists 

always discuss ACP when considering ICD, some 

never do that. 

No doctor expressed a negative attitude towards ACP. 

Most of them want to learn more about it. 

Conclusion: This study is limited by its small scale. 

Still, it generates the hypothesis that both 

cardiologists and general practitioners will benefit of 

an ACP training, which is organized in the next phase 

of this study. 

It’s also limited to the doctors’ behavior. The opinion 

of patients can be the subject of another study. 





Enhancing Patient-professional 

Communication about End of Life Issues in 

Non-cancer Conditions: A Critical Review of 

the Literature 

Barnes S. 1 , Gardiner C. 2 , Gott M. 3 , Payne S. 4 , Small N. 5 , 

Seamark D. 6 , Halpin D. 7 

1University of Sheffield, School of Health and Related 

Research, Sheffield, United Kingdom, 2University of 

Sheffield, School of Nursing and Midwifery, Sheffield, 

United Kingdom, 3University of Auckland, School of 

Nursing, Auckland, New Zealand, 4Lancaster University, School of Health and Medicine, Lancaster, 

United Kingdom, 5University of Bradford, School of 

Health Studies, Bradford, United Kingdom, 

6Peninsular Medical School, Exeter, United Kingdom, 

7Royal Devon & Exeter Hospital, Exeter, United 


Background: The End of Life Care Strategy for 

England highlights effective communication between 

patient and professionals as key to facilitating patient 

involvement in Advanced Care Planning (ACP). The 

strategy emphasises that communication in patients 

with non-cancer life limiting conditions is likely to be 

inadequate. Research has identified that, overall, 

patients with COPD and heart failure have a poor 

understanding of their condition. The aim of this 

study was to explore existing patient-professional 

communication interventions through a critical 

appraisal of the literature, in order to inform the 

development of a communication intervention for 

patients with non-cancer conditions. 

Methods: A systematic literature review of studies 

describing communication interventions for patients 

receiving palliative/end of life care was undertaken. 

Ten electronic databases were searched for studies 

published up to Feb 2010. Inclusion criteria were all 

English language studies relating to patientprofessional 

communication interventions for 

patients with life-limiting conditions receiving 

palliative/end of life care. 

Results: Of the 755 papers initially identified, 19 met 

the criteria for inclusion in the review. A range of 

communication interventions were identified for 

both cancer and non-cancer patients. Key features of 

interventions included: enhancing professional 

communication skills; improving patient education; 

facilitating advanced care planning; eliciting patients 

preference for future care. 

Conclusion: A range of interventions were identified 

which elicited important features of a successful 

communication model. The development of a 

communication intervention for patients with noncancer 

conditions should include careful 

consideration of these features, in addition to 

consultation with service users and professional 

stakeholders. Such an intervention is needed in order 

to meet policy recommendations for improvements 

in communication. 



Pressure Ulcer in Palliative Care: Confort and 

Healing? 

Coelho P. 1 , Almeida A. 1 , Sousa D. 1 , Alves S. 2 , Borges T. 3 , 

Vales L. 4,5 , Alves P. 1,4 

1 Catholic University of Portugal, Health Sciences 

Institute, Porto, Portugal, 2 Chelmsford Nursing 

Home, Dementia Unit, Chemsford, Essex, United 

Kingdom, 3 Hospital São Teotónio, EPE, Núcleo 

Executivo da Comissão de Controlo de Infecção, 

Viseu, Portugal, 4 APTFeridas - Portuguese Wound 

Management Association, Porto, Portugal, 5 Hospital 

São João, Porto, Portugal 

Palliative care (PC) minimizes the suffering in the 

acute phase of disease and ensures at the same time 

humanized care and adequate family follow-up. 

Among other issues, raises the question of dying with 

dignity, without suffering, without the use of means 

to prolong or shorten the time to live but to provide 

peace, comfort, respect, and preferably, quality of life 

in the final moments of existence of each person. 

Pressure Ulcers(PU), cause suffering and pain to 

patients and family. 

Aims: Collect evidence about pressure ulcers in 

patients receiving palliative care, identify on the 

literature recommendations to clinical practice 

focused on prevention and treatment of PU in 

patients receiving PC. 

Methods: A systematic review was held. A sensitive 

strategy was developed, to identify the scientific 

217 


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literature on PC and PU. Some data bases were 

consulted, such as PUBMED, CINAHL, EMBASE, using 

key words: “palliative care” and “pressure ulcer”. 

Inclusive dates January 2000 to Aug 2010. Data were 

extracted by two independent researchers and 

decisions were reached by consensus. Through 

analysis, studies that broached the topic of PU in PC 

were selected. 

Results: 115 studies identified, 67 (58,3%) made 

reference to the treatment and prevention, 28 (24,3%) 

related to control of symptoms, 10.4% to quality of 

life and 7% to infection. The principal 

methodological flaws were the design of the studies 

and the sample size. 

Conclusion: Sufficient consensus exists on pressure 

ulcer management, of the 89 studies of PU and 

palliation, 59 fulfilled all the criteria for inclusion,. In 

a global and balanced management of the treatments 

should be measured risks and benefits, using 

therapeutic simplified because all decisions must be 

taken in order to avoid prolonging the suffering, but 

essentially promoting comfort and quality of life. PU 

are reflex of deterioration and part of the disease 

trajectory, should not be always the goal of treatment, 

but displaced by a greater need for comfort. 



‘To Dialyse, or Not to Dialyse - That Is the 

Question’: Treatment Dilemma for Elderly 

Patients with End-stage Kidney Disease 

(ESKD) 

Llewellyn H. 1 , Low J. 1 , Davis S. 1 , Burns A. 2 , Smith G. 3 , 

Hopkins K. 2 , Johnson S. 2 , Jones L. 1 


Care Research Unit, Department of Mental Health 

Sciences, London, United Kingdom, 2 Royal Free NHS 

Trust, London, United Kingdom, 3 Imperial College 

London, London, United Kingdom 

Dialysis treatments are widely available, but for elderly 

patients with multiple co-morbidities benefit to quality 

of life or survival is questionable. For these patients, 

conservative management (MCM) is becoming more 

widely available across the UK, wherein renal teams 

have responsibility for providing a generalist palliative 

approach with input from palliative care specialists. 

Little is known about how patients make and cope with 

the decision regarding these two options, which may 

appear on the surface as a choice between life 

extending and palliative treatment. As part of a larger 

qualitative study, semi-structured interviews explored 

decisions on care modality in 18 ESKD patients (mean 

age 85) who elected MCM. Verbatim transcripts are 

analysed thematically using a constant comparative 

approach. Negative secondhand experiences of dialysis 

were pervasive informing its perception as an arduous 

treatment giving life with one hand (prognosis) but 

taking with the other (time on machine). Given their 

age and other illnesses, patients felt too frail to endure 

the rigour of dialysis. The perceived prognostic 

uncertainty of dialysis either muddied the decision or 

made it easier for patients to reject. MCM was 

welcomed as an alternative option that did not 

radically disrupt patients’ lives. Most patients took 

ownership of the care decision, considering it a major 

responsibility and invested significant effort in the 

process. Whilst all welcomed guidance from their 

clinical teams and families, some perceived a battling 

against the cultural assumption of the preservation of 

life. In this way they felt some pressure from their 

communities, families, and occasionally healthcare 

teams for choosing a ‘non-life extending’ option. 

Overall themes reveal the complexity of perceived 

clinical and psychosocial factors involved in care 

decisions. These should be acknowledged and teams 

should be reflexive in their position as consultants and 

the perspectives they bring to patients. 



The Analysis of Some Metabolic Factors in 

Non-cancerous Patients with Pressure Sore 

due to their Gender 

Wysocka E. 1 , Dziegielewska S. 1 , Kudzia M. 2 , Jakrzewska- 

Sawičska A. 2 

1 Poznan University of Medical Sciences, Department 

of Clinical Chemistry and Laboratory Medicine, 

Poznań, Poland, 2 Home Hospice for Adults of 

Association of Volunteers of Palliative Care in 

Wielkopolska, Poznań, Poland 

Some metabolic factors may affect the homeostasis in 

bed sore patients. Anemia and serum protein 

alteration are thought to contribute the treatment of 

pressure ulcers in general. 

Aim: Was to assess some metabolic markers in 

malnourished non-cancerous patients with pressure 

sores due to their gender. 

Method: Elderly patients qualified to Home Hospice 

For Adults of Association of Volunteers of Palliative 

Care in Wielkopolska and presenting sacral pressure 

sore with 10-15 cm of diameter were included. Nondiabetic 

42 individuals (23 ♀ , 19 ♂ ) with no evidence 

of systemic inflammation were assessed severity of 

pressure ulcer due to the Torrance scale and stage 2 

(n=11: 7 ♀ , 4 ♂ ), stage 3 (n=12: 8 ♀ , 4 ♂ ), stage 4 

(n=10: 4 ♀ , 6 ♂ ), stage 5 (n=9: 4 ♀ , 5 ♂ ) were 

diagnosed. Feeding status was established by Mini 

Nutritional Assessment-Short Form (MNA-SF). Fasting 

measurements of complete blood count (CBC), 

erytrocyte sedimentation rate (ESR), plasma lipids, 

albumin (ALB), C-reactive protein (CRP), glucose and 

HbA 1 c, were performed. 

Results: 

1. Females and males did not differ in MNA-SF (3,3±2,4 

and 3,5±2,4 respectively), CBC parameters, ESR, 

HbA 1 c, HDL-chol., triglycerides, albumin and CRP. 

2. Women were older than men (84±8 vs 76±1 yrs old, 

p=0,02) in the study population. Decreased total 

cholesterol was found in males as compared with 

females (138±28 vs 157±25 mg/dl, p=0,03). 

3. Among metabolic parameters only fasting glucose 

was correlated with MNA-SF in whole group, females 

and males (R=0,54; p=0,0002, R=0,48; p=0,02, R=0,63; 

p=0,004). The positive correlation between ALB&T-C 

and ALB&HDL-C and the negative correlation 

CRP&T-C were observed in the whole group and in 

females only. 

4. The negative correlation ALB&CRP was confirmed 

in males (R=-0,55; p=0,02). 

Conclusion: In malnourished patients with pressure 

sore some metabolic markers may complete the 

clinical evaluation of individuals and different 

metabolic requirements seem to be respected 

according to gender. 



Palliative Care for Comatose Patients due to 

Intracranial Hemorrage: First Experiences 

De Koninck J. 1 , Geurs F.J. 1 , Masfrancx D. 1 , De Vos V. 1 , 

Horlait M. 1 , Schollaert G. 1 


Halle, Belgium 

Aim: There are no data on palliative care nor 

duration of stay on the palliative ward for patients 

admitted with coma due to a massive intracranial 

hemorrage . An important review mentions 

important prognostic factors (Qureshi et al., in their 

review of spontaneous intracerebral hemorrhage 

point out that a low Glasgow Coma Scale score, a 

hematoma of large volume, and the presence of 

ventricular blood on the initial computed 

tomographic (CT) scan of the brain consistently 

predict a high mortality rate 1 ) But the fate of patients 

for whom palliative care is given, is unknown² 

Methods: 16 patients + intracranial hemorrage and 

with the aforementioned three prognostic factors 

were retrospectively evaluated. 

16 patients were admitted from 1/2007 to 10/2010 at 

the palliative care ward . All patients had massive 

hemorrage, and were comatose: GCS < 5. Median age 

83 (range 74- 99) . Most patients had a spontaneous 

bleeding, 1 was due to oral anticoagulants and 3 were 

due to secondary hemorrhagic transformation of an 

ischemic stroke. 

Results: Median duration of stay was 7 days , range 1- 

13. The acceptance of palliative care was most difficult 

in patients dying within 24hours, the discussion of 

withholding life prolonging treatments too. 

Conclusion: This is the first series of admission to 

palliative care of patients with intracranial 

hemorrage. The wide range of duration of hospice 

stay and the suddenness of this disease requires 

specific strategies for acceptance and communication. 

References: 

1. Qureshi AI, Tuhrim S, Broderick JP, Batjer HH, 

Hondo H, Hanley DF. Spontaneous intracerebral 

hemorrhage. N Engl J Med 2001;344:1450-1460 

2. O’Leary; letter N Engl J Med 2001; 345:769-770 

September 6, 2001 



Palliative Care in HIV Infection 

Silva R.P. 1,2 , Lecour H. 3 

1 ULS Matosinhos, EPE, Pharmacy, Senhora da Hora, 

Portugal, 2 School of Allied Health Sciences 

Polytechnic Institute of Oporto, Pharmacy, Gaia, 

Portugal, 3 Health Sciences Institut Portuguese 

Catholic University, Porto, Portugal 

The presentation is a review of Palliative Care in 

patients with HIV infection and AIDS. This issue has 

little exposure in Portugal. The development and 

awareness of this type of care began in 2003 with the 

formation of the National Network of Continued 

Care. Moreover, the HIV/AIDS remains a public 

health problem and the implementation of Palliative 

Care in a network of integrated care for this disease 

has great potential and can improve the quality of life 

of patients, their relatives, friends and colleagues. The 

dilemmas associated with Palliative Care are 

numerous, especially those of an ethical nature, 

which is further exacerbated in AIDS patients due to 

their particularities and individual development of 

the infection in each patient. What is the main 

difference between this type of care and the one 

oriented to the patients with cancer? What are the 

characteristics and the main difficulty for these 

patients, that at large do not have the family support? 

What are the best options of treatment, and most 

important, when to start the palliative care in a 

disease that has an uncertain evolution? The best way 

seems to be a model of integrated care for HIV/AIDS, 

where Palliative Care play a very important part and it 

should begin as soon as the disclosure of the HIV 

status is made to the patient. This fact is still an utopia 

in Portugal, but without a proper revelation can never 

begin so unless there is heightened awareness, the 

situation will not improve. 



Palliative Care in Patients with Acquired 

Immunodeficiency Syndrome 

do Amaral J.B. 1,2 , de Menezes M.D.R. 3 , Vasconcelos 

C.D.S. 4 , Gianezeli A.P. 2 




Salvador, Brazil, 3 Federal University of Bahia, Post 

Graduate Program in Nursing, School of Nursing, 



This study aims to identify and analyze the scientific 

articles about the use of palliative care on people with 

Acquired Immunodeficiency Syndrome (AIDS) using 

the method of bibliographic review. Studies 

performed between 2000 and 2010, available in 

Portuguese and Spanish indexed in the Virtual Health 

Library database employing the keywords “palliative 

care”, “SIDA”, “HIV”, “AIDS” and its combinations 

were selected. The search resulted in thirteen articles, 

eight in Spanish and five in Portuguese found in the 

LILACS data base. The number of studies found 

showed a lack of expressivity in scientific production 

on the approach of palliative care on these people and 

the necessity of field research because the higher 

percentage of studies found refer to bibliographic 

reviews. AIDS is a chronic disease with an insidious 

beginning that culminates in biological and 

psychosocial limitations that advance along its 

progression. Therefore, all the attention given by the 

health professionals to the quality of life becomes a 

requirement. Palliative care consists of rigorous 

interventions structured in the development of 

assistance measures according to the needs of 

patients, justifying its implementation / execution in 

a person living with the end-stage of HIV / AIDS. 

Keywords: Palliative Care, HIV, AIDS. 



Symptom Prevalence and Control in 

Dementia Patients 

Bárrios H. 1 , Costa Correia S. 1 , Henriques C. 1 , Ferreira J. 1 

1 Hospital Residencial do Mar, Bobadela, Portugal 

Dementia prevalence is increasing worldwide and 

represents a major cause of death and disability. 

Patients and families needs are complex and 


challenging for the health care professionals. Being a 

progressive, life limiting condition, there are great 

benefits in adopting a palliative care approach since 

the beginning of the disease, with different priorities 

according to the stage of the disease. Symptom 

control is one of the major aspects of adequate 

palliation. 

The present work describes symptom prevalence and 

control in a group of dementia patients of an inpatient 

26 bed dementia unit. The unit is designed for 

global care of patients with dementia. Patients are 

admitted in all stages of the disease. Global needs are 

accessed at the time of admission (rehabilitation 

needs, palliative needs, family needs), and reevaluated 

at regular intervals. 

A retrospective study of all the patients admitted to 

the dementia unit in the period of 4/2006 to 10/2010 

was conducted. Sociodemografic variables were 

collected (age, sex, school years), length of stay, type 

and phase of dementia, symptom prevalence, 

measures implemented to symptom control and the 

result. We relate symptom prevalence with the type 

and phase of the dementia. Descriptive analysis was 

conducted. 

149 patients were analyzed (50% females), with a 

medium age of 81 years. Medium length of stay in the 

unit was 7,4 months (Median 1 month, minimum 1 

day, maximum 53 months). Most of the admissions 

had symptom control as major goal of intervention. 

Most frequent symptoms being neuropsychiatric 

symptoms, gastrointestinal symptoms (constipation, 

feeding difficulties) and pain. 

We emphasize thorough evaluation and diagnosis as a 

mean to adequate symptom control. The control of 

distressing symptoms allows maximization of 

patients quality of life and autonomy, and diminishes 

caregiver burden, which enables the return to the 

community and home care giving. 



Palliative Care within Institutions for 

Intellectually Disabled People 

Hoenger C. 1 , Probst L. 1 , Porchet F. 2 


Lausanne, Switzerland, 2 Centre Hospitalier Vaudois 

(CHUV), Lausanne, Switzerland 

Context: The aim of the cantonal program (CP) for 

palliative care development in Vaud is to offer PC 

independent of age, pathology or life setting. 

Therefore the CP cares for the needs of intellectually 

disabled people (IDP) living in specialized institutions 

(SI). A questionnaire was distributed across the 

Canton to ascertain information necessary to develop 

palliative care services including age of IDP, number 

and description of specific illnesses affecting IDP, 

number of medical and other health professional 

carers, interventions of external partners, death 

circumstances. 

Results: 1´359 IDP (0,2% of the population) live 

within 14 SI. For 43 %, a 2nd pathology is associated 

to the intellectual disability, of which 25% present a 

risk of dying rapidly (less than 12 months). In 2009, 

almost 50% of IDP were more than 50 years old and 

119 IDP died between 2004 and 2010. Their 

increasing life expectancy requires the SI to clarify 

their mandate in terms of PC. Care is delivered by 

specialised educators in IDP (bachelor’s degree) with 

very few health carers employed. Palliative care 

problems are complex and polysymptomatic: crisis 

management, total pain, digestive problems, 

neurological symptoms. 

Measures undertaken: 

1. A close collaboration between SI, health services 

and PC mobile teams to increase accessibility to PC. 

2. Various specific training programmes to develop 

SI’s professional PC competencies: PC reference 

persons basic and ongoing training, interdisciplinary 

basic training and an annual plenary session, 

institutional workshops on pain management and 

therapeutic engagement (advanced directives 

adjusted in cases of limited capacity). 

On-going and future projects: 

1. Creating a group of PC volunteers specific to SI. 

2. Clarifying collaboration between SI and home care. 

3. Clarifying rights and duties for IDP and their legal 

representatives. 

4. Identifying who should provide care: educators or 

health carers? 

5. Creating booklets for IDP about palliative care. 



Challenges Met by Volunteers who Offer 

Respite to Families of Children with Lifethreatening 

Illnesses at Home or in a 

Children’s Hospice 

Champagne M. 1 , Mongeau S. 2 

1 Université du Québec en Abitibi-Témiscamingue, 

Health Sciences, Rouyn-Noranda, QC, Canada, 

2 Université du Québec à Montréal, Social Work, 

Montreal, QC, Canada 

Problem: Respite is recognized as a fundamental 

element in paediatric palliative care. Even if it has 

been shown that volunteers can play an important 

part in offering respite to families of gravely ill 

children, very few studies have examined the 

volunteer practices concerning respite in this context. 

Objectives: 

1) Determine and compare the practices relating to 

respite offered by volunteers in two different 

environments, one being the families’ homes and the 

other, being a children’s hospice. 

2) Determine and compare the challenges that 

volunteers are faced with in both of these 

environments. 

Methodology: To meet these objectives, a 

qualitative methodology of a participative type was 

used in the context of two studies, the first dealing 

with an In-Home Respite program offered by 

volunteers to families of gravely ill children and the 

second dealing with practices concerning respite in a 

children’s hospice. The data was collected through 

semi-structured interviews with 24 volunteers. To 

analyse the gathered data, thematic analysis was used. 

Results: In both the home environment and the 

children’s hospice, the volunteer practices concerning 

respite are strongly oriented by the importance of play 

and of creation for the sick child. However, the 

children staying in the children’s hospice are often 

much more limited by important handicaps, which 

makes it necessary for the volunteers to be especially 

creative. The challenges met by the volunteers vary 

depending on where the respite is offered. It was 

nonetheless possible to group them into five main 

categories: assuming the role of volunteer, 

maintaining the right proximity, dealing with the 

limits of the volunteer’s role, allowing enough space 

for both pleasure and suffering, and maintaining a 

realistic outlook concerning the scope of the 

volunteer commitment. 

Main sources of funding: Fonds québécois de 

recherche sur la société et la culture; Social Sciences 

and Humanities Research Council of Canada. 



Psychosocial Care on Palliative Care Units 

Wasner M. 1,2 , Pfleger M. 1 


for Palliative Care, Munich, Germany, 2 University of 

Applied Science, Munich, Germany 

Background: According to the WHO definition, 

psychosocial care is an integral part of palliative care. 

It is still unclear, however, what we mean by the term 

psychosocial care and which professions provide 

it.Study objective: What are the components of 

psychosocial care on PCUs and who provides it? 

Methods: Medical directors of all PCUs in Germany 

received a questionnaire about elements of 

psychosocial care, involved team members, the 

particular role of social work, as well as key data of the 

PCU. Up to now, 72/230 medical directors returned 

the questionnaire (response rate 31%). 

Results: The most frequently named elements of 

psychosocial care are emotional support of the patient 

and relatives (91%), discharge planning (90%), 

counselling on legal requirements (86%), grief 

counselling (80%), psychological support (77%), 

mediator for the team (61%), spiritual counselling 

(53%) and coordination of volunteers (47%). Most 

PCUs in Germany have social workers (89%), spiritual 

counsellors (87%), psychologists (80%) and 

volunteers (74%) in their multidisciplinary teams. 

Medical directors hold psychologists (74%) and social 

workers (68%) as mainly responsible for psychosocial 

care, followed by physicians (66%) and nurses (53%). 

Tasks ascribed exclusively to social workers are 

common aspects of clinical social work (e.g. 86% 

named assistance with request forms, 86% 

counselling on social assistance laws). In addition, 

social workers in PCUs perform responsibilities 

together with other professions in the palliative care 



team, e.g. support for dependants (49%), arrange 

services for bereaved persons (35%) or mediation 

between caregivers and patients (39%). 

Conclusion: Psychosocial Care as an essential part of 

palliative care is implemented in German PCUs and 

social work is one key provider in this field. It is not 

solely responsible for traditional social work tasks, but 

is also entrusted with a wide range of additional 

activities within the psychosocial palliative care team. 



Co-ordination of Generalist End of Life Care in 

the UK: A Multi-site Ethnographic Study 

Mason B. 1 , Barclay S. 2 , Daveson B. 3 , Donaldson A. 1 , 

Epiphaniou E. 3 , Harding R. 3 , Higginson I. 3 , Munday D. 4 , 

Nanton V. 4 , Shipman C. 3 , Murray S.A. 1 



2 University of Cambridge, Institute of Public Health, 

Cambridge, United Kingdom, 3 King’s College 

London, Cicely Saunders Institute, London, United 

Kingdom, 4 University of Warwick Medical School, 


Background and aim: Appropriate, effective and 

timely generalist care for patients and their families 

towards the end of life is recognised as an essential 

component of high quality, equitable care. Improving 

coordination of care is one of the core objectives of 

the UK Department of Health End of Life Care 

Strategy. We aimed to identify and understand the 

contextual complexities and challenges to well coordinated 

care delivery for people towards the end of 

life in different generalist settings. 

Method: We utilised organisational ethnography in 

three care settings among staff who were not specialist 

palliative care providers; an acute receiving unit in a 

large teaching hospital, a respiratory outpatient clinic, 

and a primary care practice. The multiple methods 

protocol included shadowing , sustained, detailed 

interactions with health providers and interviews 

with patients and their carers over 9 months. The 

integrated datasets offer an understanding of how 

end-of-life care co-ordination is understood, initiated 

and conducted over time within patient trajectories 

and in the context everyday health care provision. 

Results: The ethnographies demonstrated the 

contrasting priorities and differences in approach at 

the different sites. The patient-centred, long term 

focus of primary care drives individual and team 

activity and requires flexibility and collaboration. In 

the secondary care short-term, acute setting, role 

boundaries and a clearly defined process, in which 

time constraints are paramount, may result in a less 

personalised experience for patients. 

Conclusions: Coordination of care for patients and 

their families with advanced progressive diseases 

undergoing emergency admissions or transition 

across settings is important. The level of coordination 

and the systems in place influences people’s 

experience of coordination of generalist settings. 

Further research regarding how collaboration 

influences coordination of care is required. 



The Changing Face of Palliative Medicine in 

Ireland: A Study to Explore Health Care 

Professionals´ Perceptions of the Changes that 

Have Taken Place in the Practice of Palliative 

Medicine in Ireland 

O’Siorain L. 1 , Gleeson A. 1 , Burke E. 1 


Ireland 

Background: Palliative Medicine services in Ireland 

have developed and grown significantly over the past 

10 to 15 years. Despite one quantitative study 

focusing on the physical and practical changes that 

have taken place over this time, no study has yet 

focussed on the impact of such changes. 

Aims: 

1. To explore the perceptions of health professionals 

relating to the changes that have occurred in 

Palliative Medicine in the last 10-15 years 

2. To explore their perceptions of how these changes 

might shape the future of Palliative Medicine in 

Ireland 

Methods: A list of doctors, nurses and care 

attendants that have been working in Palliative 

Medicine for at least 8 years was generated. Potential 

interviewees were contacted by letter and invited to 

219 


(Friday)


(Friday) 


participate. Depth interviews were conducted. The 

interview process continued until data saturation was 

reached. 

The data was analysed using a form of content 

thematic analysis (Burnard, 1991) in which data is 

read and re-read until categories emerge. The 

categorisation system was checked repeatedly. This 

type of analysis allows for greater transparency and 

validity. The data will finally be written up, with a 

commentary that links different examples of data. 

Results: Exploring the perceptions of health care 

professionals in relation to the changes in the practice 

of palliative medicine should provide useful insights 

into the developments within the specialty and may 

indicate a future direction. 

Conclusions: This study may lead to the recognition 

of progress that has been made, but may also 

highlight important aspects of care that may have 

been lost as the specialty develops. It will be 

important to reflect on these changes as the specialty 

looks towards a new decade. This study will provide 

evidence for this reflection. 



Nutritional Care: A Strategy of Well Being and 

Quality of Life in Advanced Cancer 

Pereira K. 1 , Benarroz M.D.O. 1 , Cardoso A.P.F.Q. 1 , da Silva 

C.H.D. 2 

1 Instituto Nacional de Câncer, Serviço de Nutrição, 

Rio de Janeiro, Brazil, 2 Instituto Nacional de Câncer, 

Divisão Técnico-Científica, Rio de Janeiro, Brazil 

Background: Advanced cancer patients may have 

anorexia and many symptoms that contribute to 

decreased food intake such as dysphasia, nausea, 

vomiting and constipation, which may worsen the 

clinical picture. The patient-tailored nutritional 

intervention, the monitoring of consumption and 

composition, volume, consistency and frequency of 

the diet are strategies to minimize the deterioration of 

the nutritional status and the life quality of the 

patient. 

Objective: Analyze the number of patients who were 

on hospital diet in a palliative institution care. 

Method: Cross sectional and retrospective study 

using nutritional data of hospitalized patients. Daily, 

all patients were evaluated by a nutritionist in order to 

verify if they may receive diet. It was analyzed the 

type of feeding - oral and enteral - and if the diet was 

for either keeping the nutritional status or patient 

satisfaction. It was considered “satisfaction diet” the 

diet with consistency liquid to pasty with the volume 

300ml/day or less. The collection period was from 

August to October 2010. For data analysis, it was 

considered the total number of nutritional procedure 

in the period. 

Results: In an amount of 3281 nutritional 

procedures, 80.7% received diet. These diets were 

divided in oral diet (65.6%), enteral nutrition (30.3%), 

only for maintain nutritional status, and satisfaction 

diet (4.1%). 

Conclusion: Anorexia is one of the most common 

symptoms of patients with advanced cancer 

therefore, nutrition is relevant to the overall 

therapeutic strategy, particularly in palliative care. 

The role of the nutritionist is to facilitate ways and 

means of nutrition, aiding in controlling symptoms, 

and promote the welfare and quality of life for 

patients and caregivers. 



Evaluation of the Patient Own Drug Scheme 

(PODS) Pilot on Side A Palliative Care 

Wright M.B. 1 , Moran S. 2 , Holmes J. 2 , Mcloughlin K. 3 , 

Whiriskey C. 1 , Mulcahy L. 2 

1 Milford Hospice, Pharmacy, Limerick, Ireland, 

2 Milford Hospice, Nursing, Limerick, Ireland, 3 Milford 

Hospice, Limerick, Ireland 

Background: The development of using Patients 

Own Drugs (“PODS”) has received increased attention 

in the medical/health sciences literature. The use of 

the scheme to promote continuity of pharmaceutical 

care across the community and inpatient interface is 

considered essential and offers advantages to both the 

health care service and the patient. Therefore it was 

decided to pilot such a system in the Specialist 

Palliative In-Patient Unit, Milford Care Centre. 

Objectives: To review medical/health sciences 

literature to assess the effectiveness of the “PODS” 

system in other organisations and compare with the 

findings of this evaluation.· To compare the timing of 

drug rounds using the “PODS” and the traditional 

drug trolley to assess any potential impact of the 

“PODS” on time management.· To determine 

pharmacy staff and Registered Nurses’ experience 

using the “PODS”.· To determine any cost 

effectiveness of the “PODS”.· To determine the impact 

of the “PODS” on the pharmacy service workload. 

Methods: An evaluation of the project was 

conducted in stages corresponding with the principal 

objectives of the study and used a mixed methods 

approach. A pilot was carried over three months. Data 

was collected under the headings: literature review, 

comparison of drug round times, cost effectiveness, 

pharmacy time and through focus group interviews 

with nursing staff and pharmacy staff, and meetings 

with doctors. 

Results: 

· Nurses could simultaneously administer medicines, 

reducing time for rounds by up to 75%. 

· The average medicine cost saved was €77.50 per 

patient. 

· Nurses experienced fewer drug errors. 

· Both nursing and pharmacy staff reported high 

levels of satisfaction. 

Conclusion: The pilot has been successful from time 

management, financial and staff satisfaction 

perspectives. 



General Practitioners Use of and Satisfaction 

with a Community Palliative Care Service 

Cosgrove B.J. 1 , Connaire K. 1 , Mcquillan R. 1 

1 St Francis Hospice, Dublin, Ireland 

Aims: To assess GP satisfaction with a specialist 

community palliative care service and explore reasons 

for non-referral if appropriate. Community palliative 

care services in Ireland provide support to patients 

with life limiting illness outside the hospital setting. 

Delivery of such support requires interaction between 

the services and General Practitioners (GPs), as the 

primary medical carers of patients. There is limited 

knowledge of how GPs make use of and their 

satisfaction with the palliative care services provided. 

Methods: A postal questionnaire, modified with 

permission from a UK study was used as the research 

tool. The service examined provides multidiscliplinary 

palliative care to an urban population of 

approximately 500,000, in a specific geographical area. 

The questionnaire was distributed to the GPs (n=314) 

working in the area served by the service and returned 

anonymously. Data analysis was undertaken using 

SPSS (Statistical Package for the Social Sciences). Fishers 

exact test was used to examine for association between 

the variables identified. A significance level of P< 0.05 

was set for all analyses. 

Results: A response rate of 37% was obtained. All 

respondents were aware of the study site service and 

the majority had referred patients over the preceding 

two years. 97% asserted they would recommend the 

service to a colleague. Less than 1 in 4 felt their 

patients with palliative care needs could be managed 

without the support of the service. Reasons for non 

referral were unrelated to the service and usually due 

to patient factors. Areas for improvement were 

highlighted by over half the respondents, such as 

increased GP participation in treatment decisions. 

Conclusions: Study findings reflected generally 

positive views of the service and its aspects among 

respondents. The majority of GPs described their role 

as working alongside the service. However areas for 

improvement in the service were highlighted and 

should be addressed. 

(Study was self funded) 



Italian Survey of General Practitioners: 

Knowledge, Opinions and Activities on Home 


Beccaro M. 1 , Lora Aprile P. 2 , Scaccabarozzi G. 3 , Cancian 

M. 2 , Costantini M. 1 


Palliative Care Network, Genoa, Italy, 2 Italian Society 

of General Practice (SIMG), Florence, Italy, 3 Italian 

Society of Palliative Care (SICP), Milan, Italy 

Aims: To exploring knowledge, opinions and 

activities of Italian General Practitioners (GP) on 

home palliative care (HPC). 

Methods: A telephone survey of 1.690 GPs, 

identified after a stratification by three geographical 

areas, was performed. Information on knowledge, 

opinions and activity of Italian GPs on HPC was 

gathered from an ad hoc questionnaire. 

Results: Valid interviews were obtained for 88% of 

the sampled GPs (n=1.489). Most of GPs interviewed 

was male, with a mean age of 53 years and 65% was 

involved in HPC assistance of 3-10 patients per year. 

Knowledge: 25% of GPs recognised a right definition 

of palliative care, 41% of the palliative care objectives, 

66% that palliative care should be provided by a 

multiprofessional team comprehensive of GP and 

60% that HPC needs an individual plan care. 

Moreover 92% of them reported that “do not exist a 

maximum dose of morphine per day for pain 

control”. Opinions: most of the of GPs strongly 

agreed that, among the activities of GPs in HPC, there 

are: to be ready available during working hours, to 

break bad news to patient and family, to collaborate 

with the multi-professional team in order to organize 

the individual care plan. Activities: most of the of GPs 

reported that, in their daily practice with end-of-life 

patients, they discontinue the drugs that are not 

useful to symptoms control and seek advice from 

palliative care physician when the symptoms are not 

controlled. 

Conclusion: This survey show an uncertainty of GPs 

on the most theoretical issues, as definition and goals 

of palliative care, but a strong willingness to the 

integration with the multidisciplinary home 

palliative care team. To further enhance the skills of 

GPs and facilitate the collaboration with home 

palliative care services, it might be useful realize ad 

hoc training projects, related to the different 

organizational dimension of home palliative care 

services in Italian regions.This work was supported by 

a grant of Wyeth and Company of Pfizer. 



Managing Palliative Care in Long Term Care 

Homes 

Kaasalainen S. 1 , Kelley M.L. 2 , Brazil K. 1 , Wickson- 

Griffiths A. 1 , McNaulty J. 2 , Sims Gould J. 3 , Arseneau L. 2 , 

Gaudet A. 2 , QPC-LTC Alliance 

1McMaster University, Hamilton, ON, Canada, 

2Lakehead University, Thunder Bay, ON, Canada, 

3University of British Columbia, Vancouver, BC, 

Canada 

Aims: As the population continues to age, more 

people will die in long term care (LTC) homes. 

Minimal research has focused on the current 

experiences of staff, LTC residents and their family 

members related to how palliative care is managed for 

this unique population as well as the inherent 

challenges in this sector. The purpose of this study 

was to explore how palliative care is currently 

managed in LTC homes. 

Methods: A qualitative descriptive design was used 

to collect data in four LTC homes in Ontario, Canada. 

Data was collected using 12 focus groups (6 with 

nurses, 6 with personal support workers) and 72 

individual interviews (10 with residents, 62 with 

family members). Data were analysed using thematic 

content analysis. 

Findings: The major themes that emerged from the 

data were all focused on the importance of ‘Talking 

About Palliative Care’. Staff, family members and 

residents spoke of their desire to manage symptoms 

for residents as residents’ health status declined. To do 

this effectively, relationships needed to be developed 

among all of them. These relationships became 

increasingly important as residents approached their 

death and all participant groups highlighted the need 

to spend more time with residents and their families 

during this time. Learning about palliative care and 

working as a team were critical to promoting quality 

care for residents and their family members. However, 

staff, residents and their family members all 

acknowledged the challenges in the current system 

that necessitated optimizing limited time and 

resources in LTC. 

Conclusions: These study findings highlight the 

limited conversations about palliative care that occur 

in LTC homes. Future interventions aimed at 

encouraging more conversations about palliative care 

among staff, residents and their family members are 

needed so that the their quality of life in LTC, can be 

improved. 




Obstacles to Continuity of Palliative Care: A 

Systematic Analysis of Interactions between 

Five Different Groups of Professional 

Caregivers 

Hladschik-Kermer B. 1 , Kaufmann H. 2 , Pichler P. 3 , Jonas 

B. 3 , Neumayr R. 4 , Tomasek J. 5 , Watzke H. 1 

1 Medical University of Vienna, Vienna, Austria, 

2 Wilhelminenspital Wien, Oncology, Vienne, Austria, 

3 CS Hospce Rennweg, Vienna, Austria, 4 Caritas der 

Erzdiözese Wien, Vienna, Austria, 5 Ärztekammer für 

Wien, Vienna, Austria 

Aim of study: Identification of obstacles which 

hamper continuity of palliative care. 

Methods: 226 members of 6 different caregivers in 

palliative care (PC) (mobile palliative teams, PC 

nurses, home care nurses, family physicians, hospital 

oncologists, palliative care physicians) were included 

in an survey based on Delphi technique. Possible 

problems for continuity of PC were first identified by 

experts for each group of caregivers and categorized 

by two external observers. A questionnaire focussing 

on items related to “Workplace” “Discharge 

management”, “Communication “and “Patients and 

their Relatives” was generated. It asked for kind, 

frequency (% of patients or situations) and relevance 

(no/ little/some/great) of problems. 

Results: 51 % of family physicians did not have 

sufficient information on location and availability of 

PC hospital beds and mobile PC services. They 

regarded that lack of information as the most relevant 

obstacle for continuity of PC. More than half of all 

oncologists stated that they did not have enough 

information on availability and tasks of mobile 

palliative care teams and on home care nurses. 

Nevertheless, they felt that that continuity of PC is 

above all hampered by low availability of PC beds. 

Team members of PC wards (nurses, physicians, social 

workers) complained also about availability of PC 

beds and attributed high importance to that problem. 

Sixty-three percent of home care nurses did not have 

sufficient contact information of PC and oncology 

words. Burnout of family care givers were rated by 

them as the most important obstacle for continuity of 

care. All members of mobile palliative care teams 

supported the view. In addition, they felt that lack of 

sufficient financial resources of family members 

greatly contributed to that. 

Conclusions: Our study reveals that professional 

caregivers regarded lack of resources and insufficient 

exchange of information as the major obstacle to 

continuity of PC. 



‘Tailor Made!’ Does the Provision of a Bespoke 

‘Hospice at Home’ Service Improve the Chance 

of Dying at Home: An Evaluation Study 

Jack B. 1 , Groves K.E. 2 , Baldry C.R. 2 , Gaunt K. 3 , Sephton J. 4 , 

Whelan A. 1 , Whomersley S.-J. 5 





Southport, United Kingdom, 3 Royal Liverpool and 


United Kingdom, 4 Queenscourt Hospice, Southport, 



Background: Promoting the choice to die at home 

is central to UK policies and strategies. Nationally, 

various models of Hospice at Home service support 

this choice. Locally a service was developed to fill gaps 

in, and work together with, existing community 

services providing a bespoke Hospice at Home Service 

outreaching from the hospice hub. 

Aim: To explore the impact of a bespoke ‘Hospice at 

Home’ service on the choice of dying at home 

Method: Retrospective cohort study and stakeholder 

evaluation during a 1 year pilot study in the North 

West of England. Data (demographic and service 

intervention) was collected on 201 service recipients. 

55 Health Care Professionals; (General Practitioners, 

District Nurses, Community Specialist Palliative Care 

Nurses and Hospital Discharge Coordinator) 

participated in semi-structured interviews, focus 

groups and electronic open end questionnaires. 

Results: Of 245 patients referred, 201 received the 

service. 184 (92%) had cancer, 36% aged over 80 

years. 57 (28%) lived alone. 181 (90%) recipients died. 

73% (132) died at home (72% (120) were patients 

with cancer), 6% (29) in the hospice, 12 (6.5%) care 

home, 1 (0.5%) in an ambulance on their way home, 

7 (4%) hospital. 51 patients lived alone, 69% (35) d ied 

at home. Health Care Professionals reported the 

impact of the different elements of the service 

(accompanied transfer home; multiprofessional 

(including doctors) crisis intervention team and a 

flexible sitting service) as being instrumental in 

helping patients to remain at home. The additional 

service supplements existing services, enables a 

speedier discharge home and supports carers to enable 

them to continue coping. 

Conclusions: This novel bespoke service provides 

different elements of a Hospice at Home service, a 

tailor made package to meet individual and local area 

needs. This service appears to be having a major 

impact on place of death and is enabling patients to 

die in their place of choice. 



Shared Care Model as a Coordination Strategy 

in Palliative Care. Two Years Experience of the 

Support Team Palliative Care Rio Tinto 

Hospital 

Serrano S.L. 1 , Camacho T.P. 2 

1 Riotinto Hospital, Palliative Care, Zalamea la Real, 

Spain, 2 Riotinto Hospital, Palliative Care, Minas de 

Riotinto, Spain 

Introduction: The coordination between different 

levels of care, desire for managers and health 

professionals has always been a pending issue in our 

health care system. Only certain specific strategies 

have been achieved partially. 

The Process Care Palliative Care 2 Edition of 2007¹ 

establishes the shared care model between the 

different levels of care as the ideal strategy for 

approaching patients in a terminal situation, whereby 

the conventional resources of Primary Care and 

Hospital Care and Advanced Palliative Care intervene, 

depending on the complexity of the patient to ensure 

proper control and monitoring. 

Methods: Retrospective descriptive study, whose aim 

is to determine the activity undertaken by the Support 

Team Palliative Care Riotinto Hospital since its 

introduction two years ago. To achieve this, we have 

developed a triangulation of data, records made by 

the team, were done in coordination with the rest of 

the structure of the northern area of health 

management and participant observation of the two 

researchers involved in the study. Our primary 

objective has been from the beginning, to facilitate 

communication between the different levels, for 

maximum optimization of resources, promoting the 

coordination of actions. 

Conclusions: The shared care model based on the 

complexity, is configured as a powerful tool for 

coordination of care, ensuring adequate care for 

terminal patients in our health care area, improving 

communication between levels (Hospital and Primary 

care teams) and optimizing resources. 



What Are the Important Issues which 

Influence Community Staff Nurses in the 

Delivery of Palliative Care? 

Corroon M. 1 , Munday D. 2 

1 NHS Coventry, Specialist Palliative Care Services, 

Coventry, United Kingdom, 2 University of Warwick, 


Aim: Community nurses have a central role in caring 

for palliative patients in their homes; providing 

nursing care, practical advice and support to patients 

and their families. Fewer senior community nurses 

resulting from recent organisational changes have led 

to less experienced nurses becoming increasingly 

involved in delivering palliative care. Few studies have 

explored the experiences of this group. This study was 

undertaken to explore the experiences of community 

staff nurses in delivering palliative care. 

Method: Semi-structured interviews with 10 

community staff nurses with 1- 10 year experience, 

working in one city in the UK were undertaken, 

recorded and transcribed verbatim. Interviews 

explored the experiences, thoughts, feelings, needs 

and concerns of participants in depth. Analysis 

employed a template method also drawing on 

existing literature and previously developed theory 

relevant to palliative care nursing. 

Results: Interviews revealed that community staff 



nurses aspire to provide high quality palliative care. A 

series of themes relating to real-life stories, situations 

and structural elements emerged including: personal 

transition to the community from training or hospital 

based practice, connecting with the patient, ‘doing 

for’ the patient and family, personal and professional 

resources available, and preservation of their own 

integrity by means of emotional management and 

reflection. However, at times participants felt they 

lacked the experience and resources to deal with 

complex situations and felt unsupported by senior 

colleagues. 

Conclusion: Community staff nurses develop skills 

for palliative care by drawing on their previous 

experience and the professional resources available to 

them. However lack of support can put both the nurse 

and patient at risk. Nurse leaders should be alert to 

staff needs and concerns, including the emotional 

effects of nursing dying patients and formal support 

mechanisms should be provided. 

Self Funded. 



Barriers and Bridges of Integrating a New 

Specialized Inpatient Palliative Care Service 

in a Tertiary University Centre: Lessons 

Learned from Basic Data 

Klein C. 1 , Hofmann S. 1 , Lang U. 1 , Sittl R. 2 , Ostgathe C. 1 

1 University Hospital of Erlangen, Department of 

Palliative Medicine, Erlangen, Germany, 2 University 

Hospital of Erlangen, Department of Pain Therapy, 

Erlangen, Germany 

Background: For a team that starts up with a new 

specialized service it can be challenging to achieve 

adequate knowledge on aims of and attitude towards 

palliative care inside and outside an institution. With 

the aim to analyse how efficient efforts to introduce 

the service were, patient characteristics during the 

first six months were analysed. 

Methods: All patients admitted in the first 6 months 

of a newly implemented palliative care unit (PCU) 

were documented in HOPE (Hospice and Palliative 

Care Evaluation). Data was exported and analysed 

descriptively. To test for changes overtime the period 

observed was dichotomised. The first 3 months were 

compared to the second 3 months. 

Results: In the first 6 months 94 patients (male 47%, 

mean 66 y) were treated on the PCU. 68% of the 

patients were admitted from different disciplines 

inside the university hospital, 9% from other 

hospitals and 23% from home. 83% of patients had a 

diagnosis of cancer. The majority of patients (60.6%) 

died on the PCU. The number of patients that died 

declined (68% vs. 53%). The patients admitted from 

outside the university hospital went home more often 

in the last three months (57% vs. 25% in the first 

three months). 

Discussion: The overall number of admissions for 

the 6 months shows that the service is well accepted. 

However, the major challenge in the first six months 

was to clarify - within and outside the institution - 

which patient may benefit from a stay on the PCU. In 

the beginning possibly only the dying patient was 

assumed to qualify for admission. Continuous 

education for the teams, integration into disease 

related board meetings and intense internal and 

external “public relation” helped to overcome some 

of the barriers. Apparently this was achieved better for 

the outpatient sector. Educational efforts on aims of 

palliative care have to be intensified. 



Access to Palliative Care Services in the 

Hospital: A Matter of Being in the Right 

Hospital Hospital Charts Study of Patients 

Potentially Benefiting from Palliative Care 

Services in a Canadian City 

Cohen J. 1 , Wilson D. 2 , Thurston A. 2 , MacLeod R. 3 , Deliens 

L. 1,4 


Care Research Group, Brussel, Belgium, 

2 University of Alberta, Edmonton, AB, Canada, 

3 University of Auckland, Auckland, New Zealand, 4 VU 

University Medical Center, Department of Public and 

Occupational Health, EMGO Institute for Health and 

Care Research, Expertise Center for Palliative Care, 


Background: Inequalities in access and increasing 

medicalization in the delivery of palliative care have 

221 


(Friday)


(Friday) 


been identified as main issues related to palliative care 

(PC) services. This study examined which patients 

who could potentially benefit from PC services 

accessed it and which ones did not, and compared 

their care characteristics. 

Methods: Select information about end-of-life care 

needs, actual care provided, and patient sociodemographic 

and diagnostic information was 

collected from hospital charts of all patients who died 

over one year (April 2008-March 2009) in two midsized 

hospitals of a large city in Canada, similar in size 

and function and run by the same administrative 

group. Only those patients who were PC candidates 

(ie recorded as non-sudden and expected deaths) were 

selected. 

Results: In hospital 1 (with a PC unit), 68% died 

having used PC services. A significantly lower 

proportion (29%) of patients dying in hospital 2 

(without a PC unit and reliant on a visiting PC team) 

was referred to PC services. This lower referral 

likelihood was found for all patient groups, even 

among cancer patients, and remained after 

controlling for patient mix in the two hospitals. 

Referral was strongly associated with having cancer 

and with younger age. While patients receiving PC 

services in both hospitals more often received 

analgesics in the days prior to death, more often had 

family present at the moment of death, and had fewer 

technologies in use as compared to those not 

receiving PC services, these differences were small or 

not significant. 

Conclusion: Referral to palliative care seems to 

depend, at least in part, on the coincidence of what 

hospital one ends up in. Developing PC units or at 

least establishing an onsite team of committed PC 

providers in every hospital could increase referrals and 

equity in referrals to PC services. The relatively low 

access for older and non-cancer patients and 

technology use in hospital PC services require further 

attention. 



The Ligurian Palliative Care Demonstration 

Project 

Beccaro M. 1 , Costantini M. 1 


Palliative Care Network, Genoa, Italy 

Background: Development and implementation of 

effective palliative care programs for patients with 

advanced and terminal disease has become an 

important public health issue. In 2007, a Ligurian 

decree defined the organizational model of the 

Regional Palliative Care Network (RPCN). The 

objective of the RPCN is to promote and ensure that 

palliative care of high quality are provided to all 

patients and families that need it. The RPCN, is 

constituted of five Local Palliative Care Networks 

(LPCN). Each LPCN is a coordinated network of 

healthcare services (community and hospital based, 

inpatient hospices), public and no-profit, dedicated to 

palliative care. A Coordination Structure, with the 

mission to technically support the LPCNs and 

developing quality improvement and educational 

programmes, was established. At 2010 the five LPCNs 

have been implemented with different degree of 

quality and coverage, skills and training of the staff 

members. 

Aims: Describing the development of the RPCN and 

analyzing the relationship between the development 

and the change in the quality of palliative care 

provided. 

Methods: The five LPCNs will be longitudinally 

evaluated through a number of structure, process and 

output indicators. A cross sectional assesment will be 

performed at the beginning of the project (baseline) 

and at the end of the project (final) in two randomly 

selected samples of deceased for cancer. The 

assesment will use the post bereavement approach, by 

interviewing the nonprofessional caregivers 2-4 

months after the patient’s death. 

Conclusion: It would be relevant, at a public health 

level, getting valid data about the impact of a regional 

palliative care program on costs and quality of care. 

An assessment of a regional palliative care program 

has been often introduced during the process of 

implementation. This project should be able to assess 

the impact of the regional program through a 

specifically designed research program. 

This work was supported by Liguria Region. 



Window of Opportunity Rapid End of Life 

Transfer Pilot 

Groves K.E. 1 , Barnard S. 2 , Deeming E. 1 , Walker S. 1 



United Kingdom, 2 North West Ambulance Service, 

Bolton, United Kingdom 

Background: When patients who realise that they 

are dying, whose preferred place of care is home, have 

months or weeks to live it doesn’t matter if discharge 

takes a couple of days to organise, but if they have 

only hours or days then hours matter. Once the 

choice has been made, the window of opportunity, 

before further deterioration prevents the transfer 

taking place, may be very short. 

Aim: To ensure that, in a local area in the northwest 

of England, a patient being transferred to die in 

another setting is able to leave the first setting within 

two hours. 

Method: Meeting the ambulance service resulted in 

arrangements for a rapid transfer within two hours 

pilot. The ambulance service provided a specific 

telephone number and promised a vehicle 

(paramedic, high dependency, on one occasion St 

John’s Ambulance) within two hours if at all possible, 

providing the ‘999’ emergency service was not 

compromised. Hospital and hospice ward staff were 

educated in the process and clearly documented 

flowchart made available to each ward. Each transfer 

was noted by both the healthcare setting ordering it 

and the ambulance service to ensure that all transfers 

were captured. 

Results: During the six month pilot, 15 rapid 

transfers were captured. Seven transfers were 

documented by both ambulance service and 

clinicains as taking place within two hours (another 

was not captured by the ambulance service but was 

documented by clinicians, therefore 8 (53% took 

place within the agreed standard. Three further 

transfers took place within 3 hours (making 73% 

within 3 hours) and another three within 4 hours. The 

final transfer took significantly more than 4 hours due 

to confusion rebooking of ambulances. 

Conclusion: A total of 53% were transferred within 

two and 93% transferred within 4 hours. It is possible, 

providing there is a well organised system in place, to 

ensure that we can meet patients’ choice to die at 

home, even when that final decision is made late in 

the day. 



A Palliative Care Day Clinic as an Effective 

Supplement of Optimizing the End-of-Life- 

Care at Home 

Hait B. 1 , Prinz-Rogosch U. 1 

1 Katharinen-Hospital Unna, Department of Palliative 

Care, Unna, Germany 

Organising the network between in- and out-patient 

structures is a crucial prerequisite for optimal 

palliative care (PC) for patients and families. At the 

same time we see the expansion of diagnostic and 

therapeutical opportunities outside the clinic as a 

possibility of using ressources in hospital more 

effectively and to fulfill the patients’ wish of a 

preferred home care. 

Our aim was to examine the efficiency of treatment in 

a PC day clinic, which we opened on top of our 

hospital PC unit and our PC ambulance.The criteria 

for patient admission to the day clinic were: 

1) need for diagnostic procedures,that cannot be done 

at home, 

2) need for special therapeutical manipulations, 

3) relief of and offering psychological assessment for 

the family. 

We analyzed 200 in- and 185 out-patients who we 

cared for last year in our PC department.47 of these 

patients came to the day clinic.Timespan of 

supervision in the day clinic: less 2 hours 8 patients, 2- 

4 hours 19 patients, 4-6 hours 16 patients, over 6 

hours 4 patients.The maximum time of stay in the 

day clinic was 12 hours. Following procedures were 

performed: 55 laboratory investigations, 21 

radiological examinations (including CT), 4 MRI, 

sonographies: thorax 19( including 12 pleura 

punctures), abdomen 24 (including 15 ascites 

punctures), 29 short infusions and 6 blood 

transfusions. 

Results: Number of patient re-admissions to the PC 

unit could be decreased by 9% compared to last year 

(without day clinic). Moreover,39% of the patients 

could remain under good sYmptom control at home 

until death, which is 14% more than last year. 

Conclusions: 

1)The extension of our department by a PC day clinic 

enabled a more efficient multi-disciplinary palliative 

offer for the out-patients. 

2) Moreover our ressources (i.e. the low bed capacity) 

could be better used for other patients. 

3) As most of the advanced ill people want to spend 

their remaining time at home, their wishes as well as 

of their families could be adressed in a better way. 



Access to Services and Support for Providers - 

A Project with Outcomes 

Harris R. 1 

1 Motor Neurone Disease Victoria, Canterbury, 

Australia 

People with ALS/MND underrepresented in palliative 

care services. Providers were reluctant to accept 

referrals. The role and responsibility of providers was 

confused, and people with ALS/MND were reluctant 

to access services. 

The aim was to establish a framework to trigger 

referral; support communication; articulate roles, and 

identify gaps in provision for people with ALS/MND 

and recommend responses. 

Data collection was a literature review and discussion 

with people living with ALS/MND, past and present 

carers, palliative care representatives, and key opinion 

leaders. Topic specific information from the literature 

review was combined with interview themes to 

construct a series of recommendations. 

Palliative care workers lacked knowledge of 

ALS/MND, and people with ALS/MND had a distorted 

understanding of palliative care. The rarity and rapid 

progression of the disease caused problems with 

coordinating care. Inpatient palliative care reported 

higher resource inputs were needed. The lack of 

appropriate respite was highlighted as a significant 

unmet need. After hours palliative care support 

offered carers and client’s peace of mind. 

Research highlighted the fear of palliative care staff in 

working with ALS/MND. The report recommended 

the development of a key worker model to promote 

early referral, support and deliver education and 

coordinate between service providers. A 

comprehensive education and support program was 

to be developed. Guidelines and a mechanism for 

supplementary funding needed to be developed. 

Funding from the Victorian Government was made 

available to fund key workers in each regional area, 

provide training and resource development, and fund 

top-up funding for inpatient core services and 

community based quality of life activities. 

Evaluation of the implemented initiatives was 

undertaken by quantitative and qualitative 

mechanism, including story collection. The outcome 

of the evaluation will be reported. 



The Implementation of Seven Day Working 

by Palliative Care Clinical Nurse Specialists in 

an Acute Hospital: A Small Change with a 

Huge Impact 

Lane J. 1 , Lloydroberts S. 1 , Gallighan N. 1 , Noble S. 1 

1 Aneurin Bevan Health Board, Palliative Care, 

Newport, United Kingdom 

Palliative patients may experience complex 

symptoms seven days a week. Traditional palliative 

services are unable to address needs outside of normal 

hours. The need to deliver a 7 day working pattern 

was driven by a national strategy in response to the 

following: 

· The majority of complaints related to care received at 

weekends, bank holidays and out of hours. 

· Staff at weekends were less experienced requiring 

more support. 

· Rapid discharge was never facilitated on weekends 

and preferred place of care not explored. 

Methods: A 7 day working pattern was implemented 

through management of change. The planning 

process included availability of specialist nurses at 

weekends and a “sweeper system” to focus on the 

assessment units. The aim was to identify patients 

needs early and facilitate discharge. A triage system 

was introduced to prioritise patients needs and 

identify education for generic staff. 


The service was evaluated through a prospective data 

collection which focussed on activity with respect to 

referrals, levels of intervention and clinical outcomes. 

Results: Benefits identified: 

1. Palliative Care Team: No more “frantic Fridays” and 

“manic Mondays.” Continuity and job satisfaction 

increased. Prescribing patterns were no longer 

influenced by day of the week. 

2. Organisation: Reduction of clinical incidents and 

complaints. 

3. Generic Staff: Feel more supported at weekends and 

their knowledge is increasing. 

4. Patient and families: Improved symptom control, 

communication, access to services and facilitation of 

rapid discharge. 

Conclusion: The implementation of seven day 

palliative care provision is achievable in the hospital 

setting and leads to improvements across all aspects of 

care. A baseline audit has supported these 

improvements and an audit is planned this year on an 

All Wales basis. A questionnaire has been devised to 

evaluate views of generic staff. Formal health economic 

analysis is planned to identify cost effectiveness. 



Regional Networks Organizative Model 

Carretero Lanchas Y. 1 , Garcia-Baquero Merino M.T. 1 , 

Martínez Cruz M.B. 1 , Dominguez Cruz A. 1 , Ruiz López 

D. 2 , Ruiz Diaz M. 1 




Paliativos, Madrid, Spain 

Aim: To establish and implement an organizative 

model incorporating the different areas of 

responsibility which conform palliative care provision 

and communication and interaction within the 

palliative care collective, other professionals and 

stakeholders. To encourage palliative care experts to 

interact and exchange ideas with other local, regional, 

national and international colleagues. To ensure our 

knowledge and skill gaps are never wider than current 

technological means. To coordinate palliative care in 

all its clinical, training and research aspects. 

Method: Identifying key professionals with specific 

interest, knowledge and skills for each area, facilitate 

and potentiate relationships among professionals. 

Establish.links between providers, units, and directive 

centres to ensure:ü Ease of access for those who need 

this type of attentionü Establishment of relevant 

circuits, protocols and guidelinesü Creation of high 

quality training programs for all stakeholdersü 

Identification of network professionals responsible for 

addressing the difficulties to access information, 

knowledge trainingü Promotion and facilitation of 

research and innovation.ü Implementation of new 

initiativesü Supervision of agreed quality indicators 

and continuous evaluation of regional strategy. 

Results and conclusion: We configured a Regional 

Observatory to monitor and regulate clinical activity, 

training and knowledge flow through the networks, 

encourage quality improvement. This platform is 

supported by means of a powerful informatic program 

specific to include Referral document, Palliative 

clinical history, Periodic multidisciplinary assessment 

document and Exit document (referral to bereavement 

program), to monior demographics, adherence to 

guidelines, compliance with best practices and the 

identification of strengths and weaknesses of the 

different team and will contribute to the development 

of educational and quality improvement initiatives. 



Trends in Palliative Care at Home: More 

Patients, Few Home Deaths 

Suija K. 1 , Suija K. 2 

1 The Estonian Cancer Society, Tartu, Estonia, 

2 University of Tartu, Tartu, Estonia 

Aims: To study 

(1) how many of cancer patients use palliative home 

care service and 

(2) how many of them die at home. 

Design, methods, and statistics: Home care 

system for cancer patients in Estonia was launched in 

1997. From 2003 the system is working across the 

country and most of the data is computerized. We 

made a retrospective study of computerized data and 

calculated the total number of cancer patients using 

palliative home care system services, the number of 

home deaths, and the number of home visits during 

seven years (2003-2009). The SPSS Base System for 

Windows 10.0 was used for data analysis. 

Results: Altogether 5616 cancer patients used the 

home care system services during seven years. The 

number of home deaths varied during the study period 

but about two thirds of the patients died at home. The 

average number of home visits per patient was 5 visits of 

physician and 11 visits of nurse. During seven years the 

number of cancer patients using the home care system 

services had increased 16%. Also the total number of 

home visits had increased but the number of visits per 

patient had stayed the same. The percentage of home 

deaths had decreased during the above mentioned 

period: being 90% in 2003 and 79% in 2009. 

Conclusion: The number of cancer patients using the 

home care services has increased during seven years. 

Illustrating the increasing need for palliative care. On 

the other hand the number of home deaths has 

decreased significantly during seven years. This may be 

associated with the changes in social system or 

individual factors. More research is needed to study 

factors associated with trends in palliative care at home. 



An Audit of Patients Discharged from the 

Community Specialist Palliative Care Services 

in 2009 and 2010, to Stablish the 

Characteristics of this Population 

Cleminson A. 1 , O’ Mahony U. 1 , Ballantine O. 1 , Connelly 

I. 1 , O’ Dowd M. 1 , Kenneally N. 1 , Rea C. 1 , O’ Leary C. 1 , O’ 

Brien T. 1 , Clifford M. 1 

1Marymount Hospice / St Patrick’s Hospital, Cork, 

Ireland 

Background: Community Palliative Care is 

provided at three levels: by nonspecialist healthcare 

professionals, those with a special interest including 

extra training and Community Specialist palliative 

Care services (SPCS) (DOHC 2001). During their 

illness patient´s needs change. It is important that 

patients can access and be discharged from 

Community SPCS according to this need. 

Objective: The aim of this audit is to gather 

information that will allow us to describe the 

characteristics of the population of patients who are 

being discharged. This knowledge will be used to 

inform further development of discharge and 

admission policies. 

Methods: All patients discharged in 2009 and 2010 

are being audited retrospectively using a standardised 

spreadsheet. The data is being collected using the 

headings below. 

Interim results year 2009; 66 patients: 

Place of care when 1st assessed: home 83%(55), 

nursing home11%(7), community hospital 6%(4). 

Who referred: hospital consultant 70% (46) GP 

30% (20). 

Primary stated reason for referral: Symptom 

control 48%(32), palliative care/homecare 17%(11), 

other 12% (8), poor social circumstance 11% (7), 

future anticipated need 8% (5), psychological support 

5% (3). 

Primary diagnosis: non-malignant 23%(15) of 

whom nuero 11%(5), cardiac 5%(3) and resp2%(1); 

malignant 77%(51) to be further categorised as: head 

and neck, lung, breast, genitourinary, GI and other. 

Stated reason for discharge: optimal level of 

symptom control maintained and achieved 38%(25), 

No further Specialist Palliative Needs 35% (25), 

documented stable disease 11%(7), moved out of 

graphical catchment area 11% (7) patient/ family 

request 6%(4). 

Re-referred within the year: 29%(19) 

Time between referral and discharge: 4- 980 

days. 

Interim conclusions: Evolving need is not unique 

to a group of diseases but is present in a variety of 

terminal illnesses. Admission/discharge policies need 

to facilitate patient movements according to their 

needs and wishes. 



Survey of the Development of the Volunteer 

Hospice Teams in Austria 

Pelttari L. 1 , Pissarek A.H. 1 , Zottele P. 1 , Baumgartner J. 2 

1 Dachverband Hospiz Österreich, Vienna, Austria, 

2 Stmk.KAGmbH, Medizinische Direktion, Graz, Austria 

Aims: The aim of this study was to monitor the 

development of the role of volunteer hospice teams in 



Austria as a contribution to the International Year of 

Volunteering 2011. 

Methods: A questionnaire was sent to all volunteer 

hospice teams in each of the 9 federal states. 97 % of 

the teams took part in this survey. 

Results: In 2009 Austria had 140 volunteer hospice 

teams with 3011 volunteers. The comparison of the 

federal states shows that the two least populated and 

smallest states have the highest percentage of 

volunteers whereas the capital city Vienna has the 

lowest. 86% of the volunteers were female, 14% male. 

The volunteers contributed overall 316 521 hours, 

63% of them in direct contact with patients and their 

families and 37% in support, e.g. supervision, 

training, help in fundraising and administration. The 

volunteer hospice teams supported 8902 patients 

(care for family members is not included in these 

numbers). Volunteers visited most of the patients at 

home (34%). Other patients they took care of were in 

palliative care units (27%), in nursing homes (22%), 

in other wards of hospitals (14%) and in inpatient 

hospices (2%) and day hospices (2%). (In Austria there 

are only two inpatient hospices and 3 day hospices.) 

All the volunteers need - and had - a solid training in 

accordance with the standards of Hospice Austria. The 

standards include 70 hours theory und 40 hours 

practise. Since 2007 Hospice Austria cooperates with 

one of the biggest banks in Austria in a project 

supporting hospice volunteer work. The growth of the 

volunteer teams in number and quality since then is 

mirroring the additional financial support. 

Conclusion: The volunteer hospice teams need 

structural and financial support in order to ensure the 

quality and sustainability of their work. The financial 

support should cover costs like training, supervision, 

refunding of travel and communication expenses. 

And: most important of all is the professional 

coordination of the teams. 



Nurse Procedures in an Outpatient Palliative 

Care Unit 

Tavares J.M. 1 , Gonçalves E.M. 1 , Couto G. 1 , Ferreira C.M. 1 , 

Caldeira A. 1 , Pires C. 1 , Moreira C. 1 , Carqueja E. 1 

1 Hospital São João, Serviço de Cuidados Paliativos, 

Porto, Portugal 

Aim: To analyse the nurse procedures in an 

outpatient Palliative Care Unit (PCU) in a University 

hospital with 2 years of existence. 

Methods: Retrospective study based in the daily 

registrations of the nursing procedures over the 

patients observed in the outpatient Palliative Care 

Unit between 1 July 2009 and 30 June 2010. The 

proceedings were categorised in 4 categories: family 

needs inventorying (identification of formal and 

informal caretakers and other social net supports), 

palliative healthcare education to the patient / family, 

primary care nurses and social centres (therapeutic 

plan, skin and oral care procedures and other), 

technical procedures (wound dressing, enemas, 

bladder catheterization, etc), therapeutic preparation 

and administration 

Results: In the analysed period 1832 nurse procedures 

were registered in 1137 external consultations done to 

the 723 patients observed (1,61 procedures per 

consultation). The main procedures were: 

- Family needs inventorying: 471; 

- Palliative healthcare education: 147 (130 to the 

patient / family; 17 to primary care nurses and social 

centres); 

- Technical procedures: 156 (115 wound dressing; 26 

enemas and bladder catheterization; 15 paracentesis) 

- Therapeutic preparation and administration: 141 (69 

in bolus, mainly subcutaneous; 30 subcutaneous 

infusions; 42 oxygen and aerosol therapy) 

Conclusions: In an interdisciplinary Palliative Care 

team nurses have a major role in the holistic 

treatment of patients and their families, intervening 

in the control of symptoms, evaluation and 

resolution of social problems and psychological and 

even spiritual support. 



Hospice as ´Hub´ - A Model for the Future 

Monroe B. 1 

1 St Christopher’s Hospice, London, United Kingdom 

Aim: Specialist/expert palliative care will always be in 

short supply. Ageing societies mean increasing 

demand in a recessionary environment with 

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diminishing financial and professional resource. This 

paper suggests that hospices have a responsibility to 

extend their reach by supporting the development of 

a competent and confident generalist workforce 

across all settings. It describes the attempt of a large 

London hospice to develop an integrated portfolio of 

service offerings over a period of 3 years, with an 

assessment of impact. 

Methods: Anaylsis of: integrated outpatient clinics 

and day care initiative; rehabilitation gym; generalist 

education and training initiatives; care home support 

programme; dementia project; extended volunteer 

programme; public education programme. 

Results: Data will be provided on service uptake, 

outcomes and costs. 

Conclusion: Scarce specialist resources work harder 

and benefit greater numbers of patients and those 

close to them when a hub model is adopted. When 

new direct care initiatives are planned by hospices, 

issues of replicability and scaleability must be 

considered. 



Evaluation of a Home Based Palliative Care 

(HBPC) Program at a Tertiary Care Hospital in 

Karachi, Pakistan 

Datoo F.S. 1 , Pir Muhammad K. 2 , Qidwai W. 3 , Essani 

R.R. 4 , Kabani M.S. 5 , Mehdi F. 1 , Ibrar M. 1 , Khan Yousufzai 

N. 1 , Damjee A. 1 

1Aga Khan University, Ambulatory Nursing Services, 

Karachi, Pakistan, 2Aga Khan University, Director 

Nursing Services, Karachi, Pakistan, 3Aga Khan 

University, Family Medicine, Karachi, Pakistan, 4Aga Khan University, Nursing Services, Karachi, Pakistan, 

5Aga Khan University, Outpatient Services, Karachi, 

Pakistan 

Palliative care is in different stages of development 

throughout the world. It’s a new concept of health 

care systems in developing countries, where limited 

resources are available to get palliative care, a need 

therefore arises to review Home Based Palliative Care 

(HBPC) Program which is first of its kind commenced 

since three years in Karachi, Pakistan. 

Objective: The study was to review the outcomes of 

HBPC program in context of the objectives 

established earlier in the program which includes 

utilization of home health services to palliative 

patients and to provide quality services to palliative 

patients. 

Methods: Retrospective study conducted to see the 

impact of last one year from August 1, 2009 to July 31, 

2010 to assess the outcome of the palliative care 

program. 

Results: Home services were mainly utilized by 

neurology & oncology patients, an approximate 138 

per month home visits were made. Patient satisfaction 

survey result showed an average of 97.3% satisfaction 

with the care & the program. 

Conclusion: The program is in demand by the 

patients. However, there is need to include more 

quality & quantitative measures to evaluate the home 

based palliative care. Moreover, there is need to 

continue monitoring and evaluation of palliative care 

& concept which is crucial to ensure effectiveness and 

efficiency of Home Based Palliative Care Program. 



Optimize Resources to Reach the Target: 

Creation of a Net to Warrant 24 Hours a Day 

Phone Medical Availability for Patients 

Treated in Home Palliative Care 

Della Corte F. 1 , Vicario F. 2 , Prino A. 2 , Candriella M. 1 , 

Lorenzoni G. 1 , Broglia R. 1 , Aprile A. 1 , Zanoni M. 1 , 

Terenteeva E. 1 , Zamponi L. 1 , Longo D. 1 , Alabiso O. 3 

1 University Amedeo Avogadro - Novara, 

Anestesiology, Resuscitation and Pain Therapy, 

Novara, Italy, 2 Maggiore Hospital, Palliative Care, 

Novara, Italy, 3 University Amedeo Avogadro - Novara, 

Medical Oncology and Palliative Care, Novara, Italy 

Background: Patients treated in home palliative 

care (PC) need to have the most possible continuity in 

care. As experienced, if do better isn’t possible, phone 

availability (PA) could be an adequate answer to 

patients needs. 

Aim: Aim is to create a net of medicin doctors (MD), 

with an appropriate know-how about PC, to create a 

24 HaD available phone service. 

Methods: In our setting, a lot of organizations 

(institutional and no-profit) are working on the field 

of PC and pain; to reach an effective result, we have 

collected all those to coordinate activity, reducing 

resources wasting. We added to an existant day-time 

PA service, funded from a no-profit society and 

performed from MD of home PC service, an overnight 

PA; this one, funded from another no-profit society, 

has been created in collaboration with anestesiology, 

resuscitation and pain therapy school of the local 

university. Before starting, MD selected had a 6 

mounths training at the home PC unit, and, after this, 

they attend continually the PC service. Coordination 

between all operators is up to the home PC service, 

and connection between they all is warranted from a 

case sheet based on the cloud-computing concept, 

that makes everyone able to acees to clinical 

information. The caregiver can phone, if needed; 

every patient has a standard emergency drug pack, 

over his therapy, for management of unexpected 

events: caregiver can administer them with the guide 

of the MD of PC. If the situation can´t be solved only 

by phone advices, the PC operator could ask for the 

intervention of territorial emergency team. 

Conclusion: The 24 HaD PA service can be 

considered an example of good collaboration between 

different services and organizations. The service has 

been effective to manage almost all questions, and 

only few cases needs to ask for other intervention. 

Besides, the union of no-profit, hospital department 

and university has to be considered a way to emprove 

PC culture diffusion, and to create new learning 

tracks. 



Audit on Deaths Known to the Community 

Palliative Service in Navan, Co. Meath, Ireland 

over a 15 Year Period: How the Service 

Developed over that Time 

Howard M. 1 , McKeown M. 2 

1 Our Lady of Lourdes Hospital, Palliative Care, 

Drogheda, Ireland, 2 Community Palliative Services, 

Navan, Ireland 

Background: In 1992 the Local Hospice movement 

in the North East sought to establish a Community 

Palliative Service in the Meath area. Handwritten 

records of all deaths of patients known to the service 

were kept on file since then. According to the Central 

Statistics Office, there was a 64% increase in the 

population of Co. Meath from 1991 until 2006. 

Objective: We set out to analyse data on 15 years of 

deaths known to the Community Palliative Services 

in Navan from 1993-2007. 

Method: Hand-written records from all deaths 

known to Community Palliative Services from 1 st 

January 1993 to 31 st December 2007 were obtained. 

The data on patient sex, age, diagnosis, place of death 

and length of involvement was analysed. 

Results: In 1993, there were 95 patients known to 

the community palliative service who died. 66% of 

these patients died at home and the average length of 

involvement of the service with these patients was 70 

days. In contrast in 2007, there were 242 patients 

known to the community palliative services in Meath 

who died that year. Of these, 43% died at home, and 

the average length of involvement with the patient 

was 124 days. 

Conclusions: There was a large increase in the 

numbers of referrals over the 15 year period, along 

with increases in non-malignant referrals, length of 

involvement and a decreasing percentage of those 

dying at home. 



Teamwork in Palliative Care 

Paiva C. 1 , Capelas M. 1 



Palliative Care is provided to patients with incurable, 

progressive and advanced diseases, incorporating 

social, spiritual and psychological support and 

symptom control, being essential that they are 

planned and delivered based on a well coordinated 

team, as teamwork is one of the four fundamental 

pillars of Palliative Care. 

Thus, it seemed relevant to conduct a literature review 

concerning this subject, so to gather and to sintethyse 

all available and important information about 

teamwork characteristics, written by the Palliative 

Care area authors. 

According to Speck (2006) there are six characteristics 

of teamwork that should be highlighted: the members 

are identified by team name, they see themselves as a 

group, have a sense of joint gains, recognize the need 

of other professional groups, communicate with each 

other and the team works as an unit. In palliative care, 

professionals adopt the interdisciplinary team model 

to increase the likelihood of good coordination of 

care, since the inter relationships between 

professionals from different areas is higher. There is a 

shared responsibility that requires “good 

documentation, effective communication skills (...) 

and professional commitment to the primary area ...” 

(Bernard et al, 2006). 

For teamwork is required a structured team with an 

identified coordinator and identification of all 

members tasks, there should be team meetings with a 

15 day maximum interval, there should be care 

protocols, there should be designed burnout 

preventive interventions, all members should have 

palliative care training, there should be an annual 

training and research plan, the patient medical file 

should be multidisciplinary, and there should be an 

improvement quality process. 

According to Randall and Downie (cit by Speck, 2006) 

the intrinsic team are the doctors and the nurses, and 

the other professionals that can be involved in care 

providing are the extrinsic team. 



Evaluating a 7-day Community Palliative Care 

Nurse Specialist (CPCNS) Service 

Carby J.H. 1 , Dawson S. 1 

1 Wigan & Leigh Hospice, Wigan, United Kingdom 

It is widely recognised that Specialist Palliative Care 

services should be available 7-days a week. However, 

expanding a service to 7-days is challenging because 

of concerns about funding, staffing, inappropriate 

utilisation and established team working practice. The 

presentation will summarise the process of 

implementation and an evaluation of the expanded 

service. 

Implementing the service involved gradual team 

acceptance of the value of 7-day working and 

subsequent empowerment, through identification of 

the most appropriate model of working. The model 

chosen was one CPCNS working a weekend in turn, 

taking their days off in lieu. The team expanded to 

provide backfill, ensuring the week day service was 

not depleted. 

The CPCNS on duty at weekends supports the Out of 

Hours Advice Line, provides proactive phone calls and 

face-to-face assessments. They receive specialist 

medical support from the Hospice Physician on-call. 

The service has been well utilised. The majority of 

advice centres on symptom control, although carer 

distress has also featured significantly. The utilisation 

of the Out of Hours Advice Line has significantly 

increased since the teams’ involvement, particularly 

by District Nurses. 

The team have embedded 7-day working into their 

practice and are positive about the expanded service. 

This is due to the evident value that patients, carers 

and healthcare professionals place on the service at 

weekends, the different type of working when alone 

at weekends and being able to take their days off in 

the week. Weekend working also facilitates the 

sharing of practice, particularly regarding the 

complex patients that are most likely to require the 

service at weekends. 

Overall, the implementation of an expanded CPCNS 

service from 5 to 7-days a week has been a success, 

bringing support to patients, carers and healthcare 

professionals and providing job satisfaction for the 

CPCNS team members. 



The Palliative Care Association Toolkit 

(PCAT) - An Online Resource for Building and 

Strengthening National Hospice and 

Palliative Care Associations Worldwide 

Klinger C. 1 , Palhus P. 2 , Connor S. 3 

1 University of Toronto, Department of Health Policy, 

Management and Evaluation, Toronto, ON, Canada, 

2 National Hospice and Palliative Care Organization, 

Inc., Research and International Development 

Division, Alexandria, VA, United States, 3 Worldwide 

Palliative Care Alliance, London, United Kingdom 

Background: Sustainability and growth of the 

international hospice and palliative care movement 


are dependent, in part, on organizational 

infrastructure development. A toolkit and repository 

of resources has been designed to build and 

strengthen national associations worldwide. 

Methods: The Palliative Care Association Toolkit 

(PCAT) is a web-based, interactive technical assistance 

tool providing information on how to establish a 

national or regional hospice and palliative care 

association and how to strengthen such an entity 

once it is up and running. Each section starts with a 

real-life vignette by association leaders and is 

connected to a Topic Library that allows for 

navigation by subject heading. A voluntary feedback 

tool is linked on the toolkit landing and conclusion 

pages, respectively to monitor usage and enhance 

content. A pilot survey - including cultural 

appropriateness checking - has been performed prior 

to going ‘live’. 

Results: Across all three parts “Starting from Scratch”, 

“You Have Formed an Association, But Now What?” 

and “Further Development of Your Association”, 

respondents rated the toolkit “mostly useful” overall 

and unanimously stated that they would recommend 

it to a colleague for information on topics covered. An 

interactive CD version is currently under development 

to facilitate better access to resources - especially in 

countries where broadband Internet access is not 

readily available or slow. 

Conclusion: Although each national association is 

unique and has its own special challenges, there are 

several similar and important milestones that are key 

to the success of any association. Communication 

and the provision of resources facilitate knowledge 

transfer and collaboration, both locally and globally. 

Further user feedback will be instrumental in 

enhancing the content and the user-friendliness of 

the tool, making it a ‘living document’. 

Funding for the project has been provided through a 

grant from The Diana, Princess of Wales Memorial 

Fund. 



Reaching out: Transferring Knowledge across 

Acute, Long Stay and Community Palliative 

Care Services 

O’Flanagan Y. 1 , Connaire K. 1 , MacCallion A. 1 , 

MacConville U.M. 2 , Ryan K. 1 , Sweeney B. 1 

1 St Francis Hospice, Dublin, Ireland, 2 University of 

Bath, Centre for Death and Society, Bath, United 


Background: A number of older people with 

advanced illness are hospitalised in the last year of life 

as their care needs cannot be met in the community. 

However, many have needs that are not sufficiently 

acute to require continued hospitalisation or admission 

to specialist palliative care units. A partnership between 

hospital, long stay and community palliative care 

services developed a shared model of care to provide a 

‘step down’ service in a geriatric long stay facility to 

address this population’s needs. 

Aims: The initiative was evaluated to describe the 

development of services and to assess the benefits and 

challenges of this model of care for future provision. 

Method: Multiple methods were utilised— 

documentary analysis; survey of relatives; interviews 

and focus group discussions with service providers. 

Results: The partnership positively benefitted 

patients, families, staff and the organisations. 

A key benefit was the transfer of knowledge and 

expertise between Palliative Care and Care of the 

Elderly. 

Care of the Elderly staff gained knowledge of 

palliative care practice which was transferred to other 

areas of the long stay facility. Their skills in 

rehabilitation benefitted the patients and enabled 

some patients to return home. Specialist palliative 

care staff have learnt from this experience and now 

apply this knowledge in their practice. 

Conclusion: The model of shared care, and the 

partnerships developed, between services and 

specialties benefitted all stakeholders in the areas of 

service provision, organisational utility and transfer of 

knowledge and expertise. Ongoing support and 

resources is needed for these benefits to be sustained. 



Methodological Approaches for Nursing 

Practice in a Palliative Care Support Team 

Julian Caballero M.M. 1 , Bonino Timmermann F. 1 , Ruiz 

Castellano Y. 1 , Diaz Diez F. 1 , Redondo Moralo M.J. 1 

1 Servicio Extremeño de Salud, Badajoz, Spain 

Objective: Describe the interventions that are carried 

out by nurses in Palliative Care Support Team in 

Badajoz. 

Study desgin and methods: Retrospective and 

descriptive study. We revised medical records from 

July 2009 to July 2010 and the monthly record about 

team daily activity. 

The variables studied were: Number of nurse visits 

related to number of total visits, telephone nurse 

counseling related to the total of telephone 

counseling, nurse coordination with other colleagues, 

teaching sessions within and outside the team, 

number of undergraduate rotating and degree 

rotating and research projects carried out by nurses. 

We established ratios for each one related to the total 

of each activity in the team. 

Results: We revised 306 medical records and we 

extract these findings: 

2452 home and hospitals nurse visits out of 2727 

visits. 

447 nurse telephone counseling compared to 1941 in 

the team. 

447 nurse coordination with other colleagues out of 

the total (2377) 

23 teaching sessions within and outside the team 

compared to 87 teaching sessions in one year. 

4 nurse undergraduate rotating compared to 12 

medical students 

3 nurse degree rotating compared to 2 medical 

students. 

2 nurse research projects compared to 3 medical 

research projects 

Conclusions: The Regional Palliative Care Program 

of Extremadura allows an interdisciplinary and 

comprehensive approach in order to ensure 

continuity of care. 



Acute Palliative Care Units (APCU): A Current 

Challenge. ICO-L´Hospitalet (Spain) 

Experience 

González-Barboteo J. 1 , Porta-Sales J. 1 , López-Rómboli E. 1 , 

Llobera-Estrany J. 1 , Villavicencio-Chaves C. 1 , Calsina- 

Berna A. 1 , Maté-Méndez J. 2 , Cimerman J. 1 , Vaquero J. 1 , 

Tuca-Rodríguez A. 1 , Llorens-Torrome S. 1 , Espinosa-Rojas 

J. 3 , Gómez-Batiste X. 3 

1 Institut Català dÓncologia, Palliative Care Service, 

L´Hospitalet de Llobregat, Spain, 2 Institut Català 

dÓncologia, Psyco-Oncology Department, 

L´Hospitalet de Llobregat, Spain, 3 Institut Català 

dÓncologia, WHO Collaborating Center for Public 

Health Palliative Care Programmes, L´Hospitalet de 

Llobregat, Spain 

Aim: Describe the cancer patients (pts) clinical 

features admitted in a APCU. 

Methods: Observational prospective study. Pts were 

included throughout 3 months. Socio-demographic 

and neoplasm data were collected; as well as, 

functional status, reason for admission and 

provenance, symptoms at pts admissions, at 3 rd and 

7 th day, prognosis, cognitive status, emotional and 

social situation, ethics considerations during the 

admission; resources used, reason for discharge and 

destination. 

Results: 106 pts were included. Mean age of 

64.6±12.5 years; 53.8% were men. Main tumors were 

digestive (19.7%) and lung (16.9%), mostly spread. 

Pain (61.3%) was the main reason for admission. 

65,1% of pts had acute problems at that time. 68.9% 

of pts came from Emergency Services. Clinical 

characteristics at admission were: functional 

status:Barthel 48.2±27.9;PPS 44±14.7%. Prognosis: 

PapScore C 12.3%. Cognitive failure 31%, Pain 

Edmonton Staging System II 74%. 51% of pts had ≥7 

symptoms: mainly pain, asthenia, anorexia and 

sadness. 43.4% reported severe emotional distress. All 

symptoms improved at the 3 rd day and continued 

controlled at day 7, except for dyspnoea, drowsiness 

and dry mouth. 57.5% of pts had ≥3 social risk factors. 

Fentanyl (35.8%) and morphine (25.5%) were the 

most used opioids. Specific clinical situations during 

the admission were: delirium (43.4%) and bowel 

obstruction (11.3%). Opioids were rotated in 37.7% of 

pts and in 34.8% of the cases palliative sedation was 



needed, mainly for delirium. 49% of pts died during 

the admission, with 12.4±9,6 days as length of stay. 

50.8% of pts had ≥3complexity criteria. 

Conclusions: In our unit, complex patients are 

treated. They are admitted for several acute and 

intense symptoms, with emotional distress and social 

risk issues, while they are in a prognosis situation: 

mainly between an oncology specific approach and 

symptom control. Despite all previously described, 

fast and on time improvement of symptoms control is 

achieved. 



Co-ordination of Generalist Care for Patients 

towards the End of Life: A Literature Review 

Mason B. 1 , Barclay S. 2 , Dale J. 3 , Daveson B. 4 , Donaldson 

A. 1 , Epiphaniou E. 4 , Harding R. 4 , Higginson I. 4 , Munday 

D. 3 , Nanton V. 3 , Shipman C. 4 , Murray S.A. 4 



2 University of Cambridge, Institute of Public Health, 

Cambridge, United Kingdom, 3 University of Warwick 

Medical School, Coventry, United Kingdom, 4 King’s 

College London, Cicely Saunders Institute, London, 


Background: Increased coordination and 

collaboration have been highlighted as improving the 

provision of health and social care for people at the 

end of life. 

Aim: To review the literature concerning 

coordination or collaboration of care to determine 

whether coordination and collaboration improves the 

quality of care delivered by generalists towards the 

end of life. 

Method: Searches in PUBMED and ISI Web of 

Knowledge for the stems “coordinat-” or “collaborat-” 

in the context of the stem “palliat-“ or the phrase 

“terminal care.” Search of Web of Knowledge for the 

categories “generalist health care” and “palliative.” 

Search of PUBMED MeSH terms “palliative care 

admin and organisation”, “terminal care admin and 

organisation” and “Cooperative Behavior.” Electronic 

searches were supplemented by hand searches of 

leading palliative care journals (2008-10). 

Results: 1672 articles initially identified as requiring 

further screening, and 55 eligible studies identified. 

Different approaches/terminology to enabling 

coordination and collaboration were identified 

including networks, integrated care pathways, 

partnerships, frameworks, programmes and 

collaboratives. Lack of coordination and/or 

collaboration was routinely identified as a barrier to 

good palliative care. 

Conclusions: Approaches to enabling coordination 

and collaboration are evident in the literature but no 

metrics to measure coordination or collaboration 

were uncovered so it is impossible to determine 

whether a particular intervention increased 

coordination or collaboration. Therefore more 

research to determine whether collaboration and 

coordination improves quality of care is needed. 

Application of management or organisational theory 

as well as robust evaluation of models of coordination 

is indicated to guide current policy 

developments, and this may be aided through 

increased conceptual clarity regarding the terms 

collaboration and coordination in this context. 



Potentially Inappropriate 

Admissions/Treatment amongst Inpatients 

with Palliative Care Needs in One New Zealand 

Hospital 

Gott M. 1 , Frey R. 1 , Bellamy G. 1 , Snow B. 2 , O’Callaghan 

A. 2 , Robinson J. 2 , Campbell T. 2 , Jull A. 1,2 , Laking G. 2,3 , 

Boyd M. 4 


Auckland, New Zealand, 2 Auckland District Health 

Board, Auckland, New Zealand, 3 University of 

Auckland, School of Medicine, New Zealand, 

4 University of Auckland, Freemasons’ Department of 

Geriatric Medicine, Auckland, New Zealand 

Background: Improving palliative care provision in 

acute hospitals has been identified as a key public 

health priority, both internationally, and within New 

Zealand. The potential to better meet patient and 

family/whanau needs at the end of life within existing 

health resources has been recognised by Auckland 

District Health Board, who are partners in this project. 

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Aims: To explore palliative care need and current 

management amongst inpatients in one acute 

hospital in New Zealand with a specific focus upon 

identifying the extent and nature of potentially 

inappropriate admissions and interventions. 

Methods: This study is being conducted in the 

following stages: 

1) focus/groups interviews with clinicians; 

2) questionnaire survey of all clinical staff; 

3) census of palliative care needs over a 2-week period 

with a focus upon identifying the extent and nature 

of potentially avoidable admissions; 

4) economic analysis of potentially avoidable 

admissions; and 

5) analysis of hospital data to identify the nature and 

extent of medical interventions received by patients 

with palliative care needs who have died in the 6 

months following the census. 

Findings: Preliminary findings from phase 1 will be 

presented. These relate to clinician views of palliative 

care management within the acute hospital setting. 

Outcomes: Findings from the study will be used to 

inform the design of new service initiatives. A study 

employing similar methods is currently being 

conducted in the UK which will enable international 

comparisons to be drawn. 

Funding: Heath Research Council of New Zealand 

and Auckland District Health Board. 



Seven Days a Week - Providing a Community 

Clinical Nurse Specialist Service: The 

Experiences of a Six Month Pilot at the Prince 

and Princess of Wales Hospice in Glasgow 

Milton L. 1 , Grady A. 1 , Cook A. 1 

1 The Prince & Princess of Wales Hospice, Glasgow, 


During a six month period the community palliative 

care CNS team piloted the provision of a seven day 

service to support urgent care for patients known to 

the Hospice. 

The aim of the service development was to improve 

continuity of care to patients and their families, and 

offer support and advice out of hours. A member of 

staff was on duty from 9am-5pm at the weekend, 

providing telephone support with an option of a 

home visit if necessary. 

Data was collected on planned and unplanned urgent 

contacts. There was an average of 5.3 urgent contacts 

per weekend (range 0 to 12). The activity, source and 

reasons for the contact and any intervention and 

immediate action taken were collated. 

A focus group of staff identified that the pilot had a 

number of benefits. These were seen to be : specialist 

symptom management seven days per week, 

supporting patient choice in place of care, emotional 

support to patients and families, and an improved 

sense of team work. 

The seven day service has now been established 

within the hospice and feedback from patients and 

their families will be sought as part of a planned 

service evaluation in the Autumn. 



Specialized Home Palliative Care (SAPV) in an 

Urban Setting 

Vyhnalek B. 1 , Heilmeier B. 1 , Beyer A. 1 , Lorenzl S. 1 , 

Schlemmer M. 1 , Borasio G.D. 2 





Background: The first contract for Specialized 

Home Palliative Care (German abbreviation: SAPV) in 

Munich was stipulated between all Bavarian health 

insurance companies and the Munich University 

Hospital on Oct. 1, 2009. Care provider is the SAPV- 

Team of the Interdisciplinary Center for Palliative 

Medicine. 

Project description: The SAPV Team consists of 2 

palliative physicians, 2 nurses, 1 social worker and 1 

administrative assistant. It provides comprehensive 

home palliative care services including 24-hour oncall 

duty. Service area is the city of Munich (1.3 

million inhabitants, currently 2 SAPV-teams under 

contract, 3 more planned). 

Results: In the first 12 months 267 requests for care 

were accepted by the team (138m, 52%). 196 patients 

were oncological (73,4%), 54 were neurological 

(20,2%; 22 of these had ALS), and 17 were internistic 

(6,4%). The average age was 69.0 years [22-100]. For 

178 patients who met the requirements, a formal 

request for reimbursement of the SAPV was submitted 

(only 3 were refused). 

The average duration of home care was 40.3 days [2- 

198]. 110 patients have died [90 (82%) at home, 19 

(17%) on a palliative care unit or a hospice, 1 (1%) in 

hospital]. The hours of work with family members 

(20.2%) outnumbered the work with patients 

(18.4%). Travel time was 22.2%, despite the urban 

setting. The highest percentage (39.3%) represented 

office work (telephone calls, correspondence, 

meetings, documentation). 

Conclusion: Most of the patients were able to die at 

home, only one died in the hospital. Family members 

required more time than patients. The high 

percentage of non-oncological patients is remarkable. 

Feed-back from the families indicates that SAPV can 

contribute considerably to removing the taboo 

associated with death and dying. 



End of Life Day Care Services for the Majority - 

The Development and Execution of a New 

Facility 



This paper tracks the change process and 

development of a new centre over a two year time 

frame within a large London hospice. The centre has 

created a new and dynamic way for users to 

collectively access day, outpatient and therapeutic 

services with little growth in human and financial 

resource. Historically, there has been much criticism 

directed towards the way in which hospices deliver 

day care services to users, describing services as ‘elite’ 

and ‘irrelevant’. 

The new centre at the hospice is open 13 hours a day, 

seven days a week and provides the following: 

A social ‘hub’ for all users 

Planned Day Care 

Drop-in 

Group-work programme 

Clinics and therapies 

Information 

Bathing facilities 

Rehabilitation Gym 

Weekend and evening social and support events 

This paper will highlight the change process, 

highlighting the successes of the new development 

with particular emphasis on change management 

techniques. As well as focusing on the centre 

development, a major piece of complex culture 

change moving Home Care Nurses to a point of 

delivering on-site clinics will be introduced, as well as 

the development of a group work programme for a 

range of users. The philosophy of ýou come to us 

when you´re able, and we´ll come to you when 

you´re not´ will be introduced. Results of an 

evaluation project which has accompanied the 

development process will be shared. This includes preand 

post change interviews with patients, carers, staff 

and volunteers, as well as comparative numerical data 

of access to services. Attendance into the centre has 

risen from 15 patients in planned day care in 2008 to 

200 patients and carers day at the current time. 

Accompanying material will be introduced in DVD 

format in order to present key changes and highlight 

successes. 

This presentation will show the possibilities for radical 

innovation in institution and established beliefs, 

ensuring that the hospice movement remains a 

‘movement with momentum’. 



Before and after: An Initial Report of Nurse 

Independent Prescribing (NIP) in a Hospicebased 

Community Palliative Care Nurse 

Specialist Team 

Dawson S. 1 

1 Wigan and Leigh Hospice, Palliativ Care Nurse 

Specialists, Wigan, United Kingdom 

NIP was developed to improve quality of health care 

delivered to patients, by providing them with a more 

responsive and efficient access to medicines. In the 

area of community based palliative care NIP is 

supported by the Department of Health (NICE 2004) 

and is considered to promote the success of palliative 

care strategies, including the establishment of seven 

days a week PCNS services and attainment of 

preferred priorities of care. Prior to implementation of 

NIP the role of the PCNSs included advising GPs on 

medication, who would then issue prescriptions if 

deemed appropriate. However, this process could be 

protracted, taking up to several days, leading to a 

delay in symptom management, and resulting in turn 

in continued unnecessary suffering for individual 

patients and distress for their families. 

While NIP is now embedded into the NHS, with 

relevant policies and supportive procedures including 

funding arrangements in, this was not the case in the 

hospice. Hence, the hospice needed to develop its 

own organisational policies and procedures that 

dovetailed with those of the PCT. 

This poster will describe the work undertaken in a 

pilot study to create an organisational structure to 

promote safe and effective NIP. It will look at barriers 

encountered and strategies used to overcome them. 

To bring about this change a pilot study was 

undertaken to ascertain whether the introduction of 

NIP would lead to more timely access to medication 

and improve the patient experience. Initial data will 

be shown to illustrate time between assessment and 

issuing of prescription. 



10 Years of Providing Palliative Care in the 

Capital of Moldova 

Carafizi N. 1 

1 Charity Foundation for Public Health ‘Angelus 

Moldova’, Hospice ‘Angelus’, Chisinau, Moldova, 

Republic of 

The Charity Foundation for Public Health “Angelus 

Moldova” was founded in 2000 as an independent 

non-governmental, non-political and not-for-profit 

organization. Its main goal was to create a new system 

of medico-social and psycho-emotional support 

provided to incurable cancer patients and their 

families. 

Since November 2001 Hospice “Angelus” has been 

operating as a part of the Foundation’s project. The 

palliative care service is provided by the hospice 

mobile team in patients’ homes, by telephone and at 

the office. Now it employs 4 doctors, 4 nurses and a 

social worker. Most of the consulted patents live in 

Chisinau, but many from rural regions of the country 

also benefit from the service. 

Since October 2008 the home based paediatric 

palliative care service has been running. It has 1 

specialized doctor, a nurse, a social worker and serves 

incurable cancer children across the country. 

All the time of activities the patients were provided 

with some necessary medications, different medical 

accessories and consumables. 

Besides the patients’ service, the Foundation also 

actively provides education in palliative care both for 

medical professionals and the general public. There 

were organized and held several educational seminars 

on volunteering program development, psychoemotional 

support for incurable patients, basic courses 

in palliative care for family doctors and nurses from 

different regions of the country, a program “Training 

for trainers”, 5 national conferences with participation 

of international experts in palliative care, 32 one-day 

seminars in all the regions of Moldova. 

Since October 2009 the Foundation has been actively 

involved in establishment, development, support and 

running of home based palliative care service for 

incurable cancer patients in three rural regions of the 

country. 

Yearly the Foundation develops and runs several 

fundraising and charitable activities in order to collect 

money to support incurable cancer patients and their 

families. 


Withdrawn 



A Palliative Unit - A Way of Increasing the 

Quality of Palliative Care 

Molander U. 1,2 , Ekholm E. 2 , Benkel I. 1,2 

1 Geriatric Medicine, Sahlgrenska School of Public 

Health and Coomunity Medicine, Gothenburg, 

Sweden, 2 Geriatric Clinic, Sahlgrenska University 

Hospital, Gothenburg, Sweden 


Aim: To improve the palliative care at the hospital, at 

nursing homes and in medical home care, through 

counselling, education and promoting collaboration, 

research and development in palliative care. 

Method: During spring the year 2010 a Palliative 

Unit was created for this purpose. The unit consists of 

a medical doctor, a nurse and a social worker. 

In order to become known, the unit started to spread 

information to key persons and other units who have 

palliative patients. This was also done by sending out 

a press release, building a website and making an 

information brochure. 

Results: Health care staff from other wards, nursing 

homes and from medical home care contacted the 

unit in order to have more information, counselling, 

wishes for education in different ways and for 

cooperation in research and development. 

The staff at the unit has given counselling, both about 

patients, skills and methods in palliative care. 

Education in form of lectures has been given in 

internal and external conferences. Several more 

occasions of education are planned for in the nearest 

future. 

In order to increase the quality of palliative care the 

staff at the unit has initiated the use of the National 

Register for palliative care in Sweden in other wards. 

The unit has own research and has established contact 

with other research units at the University. 

Cooperation takes place at different networks with 

other caregivers in different professional categories. 

Conclusion: Even though the Palliative Unit has 

only existed six months, there has been a great 

interest from many professionals and units asking for 

help with their palliative care. This interest is for all of 

the tasks that the Palliative Unit has offered. This 

shows what a great need there is for this competence 

and also how important it is when you start a new 

unit to spread information in order to reach many 

persons who can be interested in what you have to 

offer. 



Non Profit Organizations for Palliative Care 

in Italy: Multicenter FCP* investigation 

Zucco F.M. 1 , Moroni L. 2 , Guardamagna V.A. 1,2 , Piovesan 

C. 1 , Sardo V. 1 





Research aims: Investigation on the current 

organization and operating features of Italian Non 

Profit Organisations for Palliative Care (NPOs), with 

specific focus on Voluntary Associations (VA). 

Study design and methods: Retrospective 

multicenter observational survey, coordinated by 

Federazione Cure Palliative (FCP), EAPC Italian 

“Collective Member” (62 NPOs associated). 35 NPOs 

were admitted to the analysis and investigated by an 

on-line Questionnaire. NPOs in Italy, at the survey 

time, were about 200. According to the Italian law, the 

majority of Organizations admitted for the survey (21; 

60%), were officially registered as VA, providing only 

non professional health and social care activities. 

“Other NPOs” were 9 (26%), Foundations 4 (11%) and 

Social Cooperatives 1 (3%). 

Results: 74,7% of personnel was non-salaried, 36,5% 

operating continuously and 33% occasionally. 14,3% 

of NPOs has entirely non-salaried personnel. In the 

sample selected 54,3% were small size NPOs< 50 units 

(31.4% of them:1-25 units). The paid staff has a 

freelance report (10% of the operating team) or an 

employees contract (9% of all workers). All NPOs 

provided a part of Voluntary, non professional, 

palliative care activities. 94.3% of NPOs stated a 

training activity for volunteers and 74.2% for health 

and social health professional. All organize events 

(conferences, cultural and sport meetings); 42.9% 

runs self-help bereavement groups; 88,6% are active 

in information campaigns for population or in the 

schools. 42.9% of NPOs contribute to the economic 

balance of one or more Palliative Care Unit by grants. 

Conclusion: The NPOs are pivotal in growth of 

Italian PCare network, with both components, full 

(pure) Voluntary Organizations and Organizations 

accredited by the NHS, providing professional PC 

(Home, Hospice, in both). 




400.000,00) 



The Barriers to Accessing Rehabilitation for 

Patients with Primary High Grade Brain 

Tumours 

McCartney A. 1,2 , Oliver D. 1,2 , Butler C. 3 , Acreman S. 4 

1 Wisdom Hospice, Rochester, United Kingdom, 

2 University of Kent, Canterbury, United Kingdom, 

3 Pilgrims Hospices, Kent, United Kingdom, 4 Velindre 

Cancer Centre, Cardiff, United Kingdom 

Primary brain tumours account for less than 2% of 

cancer diagnoses in the UK but more people under 40 

die from brain tumours than from any other cancer. 

Despite developments in some treatment options, 

survival remains poor and patients suffer with 

considerable functional and cognitive deficits. 

Rehabilitation for patients with primary brain 

tumours produces statistically and clinically 

significant functional improvements. When 

compared, similar functional gains are made 

following rehabilitation for brain tumour patients as 

for those following stroke and traumatic brain injury. 

There have been few studies looking at access to 

rehabilitation for this group of patients as a primary 

objective. However, existing studies and clinical 

experience suggest that patients with brain tumours 

do not access rehabilitation services frequently or 

easily. 

This qualitative study addressed this through semi 

structured interviews of healthcare professionals, 

investigating their experiences of rehabilitation for 

this patient group and describing commonly 

identified barriers under key themes. The interviews 

gauged the views of eight healthcare professionals 

representing three professions in different settings, 

including hospital and community based. 

The resultant barriers fell under the themes: 

professional knowledge and behaviours; services and 

systems; and the disease and its effects. Suggested 

solutions were wide ranging and included education, 

multidisciplinary meetings and specialist clinicians to 

co-ordinate care. 

The barriers to accessing rehabilitation for this group 

of patients are complex but some of the solutions 

could be reached through education and coordination 

of services. Further research into the 

benefits of, and access to, rehabilitation for this group 

of patients is essential to ensure that patients with 

brain tumours are given opportunity to gain from the 

benefits of rehabilitation in the same way as other 

diagnoses, both cancer and non-cancer. 



Community Palliative Care in Albania 

Laska I. 1 , Prifti M. 1 , Koleci G. 1 , Rama R. 2 

1 Pain Control and Palliative Care Association, Korca, 

Albania, 2 Pain Control and Palliative Care 

Association, Tirana, Albania 

Palliative Care in Albania is offered mainly to cancer 

patients in terminal stages, thus leaving aside a 

considerable number of chronic patients that need 

palliative care. This service is very well organized in 

three regions of Albania, Tirana, Durres and Korca. 

These palliative care centers offer physical and 

psychological symptom control for cancer patients in 

terminal stages. 

The multidisciplinary teams of this centers are 

involved in the training of healthcare providers social 

workers and caregivers on palliative care as a new 

discipline and its importance in caring for terminally 

ill patients. 

New teams in other cities of Albania have started to 

offer their services as well as improving their skills 

through trainings in Albania and abroad. Palliative 

Care is now a recognized service from the doctors of 

primary healthcare services and hospital services as 

well. 

In Albania patients are diagnosed with cancer in the 

regional hospital or tertiary services. Thus patients 

diagnosed with cancer in terminal stage are referred in 

the palliative care centers by the family doctors and 

hospital specialists of regional hospitals and Oncology 

specialists. 

Palliative care services in the entire Albania are non 

governmental organizations funded by foreign 

donors. The Albanian government actually does not 

cover any of the costs of these services. 





Palliative Home Care Unit: A Project for its 

Implementation 

Soares C.S. 1 , Fernandes A.F. 2 , Ferreira A.M. 3 

1 HJLC, UCCD, Anadia, Portugal, 2 HJLC, Medecine, 

Anadia, Portugal, 3 HJLC, UCC, Anadia, Portugal 

A relevant number of problems related to the end-oflife 

of palliative patients, has been identified. 

Problems lied mainly in the difficulties of relative’s 

surveillance and in the lack of right answers by health 

institutions. 

This study concluded that is indispensable guarantee 

quality of life to patients, by means of developing 

assistance structures which meet their real needs with 

a continuous home support of 24 hours a day, 

reducing their visits to the hospital and providing 

home assistance to patients in the company of their 

relatives. 

This is a case study emerging from a reality in a 

Hospital. A Health Centre and Social Support 

Institutions were involved in health assistance. 

The objectives were planned: to know the socialfamiliar 

background of palliative patients; to develop 

surveillance strategies to the palliative patient/family 

in an end-of-life situation; to contribute to implement 

a network and partnership Intensive Home Care Unit. 

This investigation occurs during the years of 2005 and 

2006. The participants were the patients detected in 

the hospital and were followed up at home. There were 

35 patients and their families included in the study. 

With the technique of questionnaire, the investigation 

was submitted to describe and content analysis. 

The study points up, as significant results, the 

receptivity of the population related to the existence 

of a IHCU; the perception in a global analysis of a lack 

of answers on this matter from the municipality 

health institutions; the impossibility of the 

development and implementation of a IHCU not 

covering 24 hours a day; the possibility of increasing 

the range of patients who benefit from this unit; the 

necessity of improvement of other institutions 

partnership; the importance of the adequacy between 

the internal and external information and the health 

professionals involvement to the intensive care 

reality; the identification of lack of intensive, 

palliative and home care formation by all the 




Implantation of New Method of Connection 

Between Sanitary Resources to Guarantee 

Continued Assistance Care in Palliative 

Patients in Northeast of Spain (Alt Camp and 

Conca de Barberà) 

Tell R.B. 1 , Rovira G.O. 2 , Forné M.T.B. 2 , López V.R. 2 , 

Hernández Morantes O.L. 1 , Rodríguez D.M. 1 

1 Hospital Universitari Sant Joan, Oncologia, Reus, 

Spain, 2 Pius Hospital, PADES, Valls, Spain 

Introduction: The treatment of oncological 

patients is complex. However, the complexity 

increases in case of advanced disease and palliative 

care situation. This fact, suggests a growing need for 

interdisciplinary palliative care team in hospitals to 

provide patients and their families accurate support at 


The medical assistance of our patients depends on 

three different units: the domiciliary support attention 

team program (PADES) of Pius Hospital Valls, the 

interdisciplinary social sanitary functional oncology 

unit (UFISS) and the general practitioner (GP); every 

one of them develop different and specific duties. 

The main purpose of this study is to know the degree 

of acceptance and satisfaction with this method of 

work. 

Material and methods: UFISS was concerned 

about a probable inadequate information flow among 

PADES, GP and UFISS, and was conscious about the 

difficulties in the follow up of the palliative cancer 

patients. Since January 2009 we proposed a working 

method that would allow a correct feedback between 

the different teams. Twice a month, individual 

meetings are carried out with each group lead by the 

UFISS-Oncology team, follow by a posterior joint 

session. This meetings allow professionals to be 

informed about patients condition, prognosis and to 

establish an individualized monitoring plan. 

To assess the efficacy and efficiency of this method of 

work we will make a survey among professionals, 

patients and families and we will ask them to 

complete a self-questionnaire, regarding specific 

227 


(Friday)


(Friday) 


variable for each group. 

Results and conclusions: Results will be presented. 

Anyway, since this method of work has been 

implanted we have perceived a better coordination 

between professionals and better knowledge of 

patients. 



Incident Pain by Movement Assessment in 

Palliative Cancer Patients Admitted to a 

Palliative Care Unit 

Costa A.S. 1 , Gonçalves J. 2 , Ferreira M. 3 , Carneiro R. 3 , 

Monteiro C. 3 , Serviço de Cuidados Paliativos, IPO - Porto 

1 Hospital de São João, Porto, Portugal, 2 Centro 

Hospitalar do Vale do Tâmega e Sousa - Unidade Padre 

Américo, Penafiel, Portugal, 3 Instituto Português de 

Oncologia do Porto, Porto, Portugal 

Aim: Incident pain (IP) is a type of breakthrough pain 

(BHP) triggered by patients’ specific activities or due to 

external causes. Movement is a common cause of IP. 

We assessed the IP induced by movement in palliative 

cancer patients without cognitive impairment 

admitted to a palliative care unit (PCU). 

Methods: A consecutive sample of patients admitted 

to a PCU between August and September 2010 was 

selected. Patients were assessed through a 

questionnaire applied at admission and daily during 

the survey. Confused patients were excluded. Basic 

epidemiological data, ECOG performance status (PS), 

primary tumor and metastasis location, baseline 

chronic pain characteristics and analgesic therapy 

were recorded at admission. The presence and 

intensity of IP with movement were assessed. 

Results: This study included 38 patients, 45% were 

men. The median age was 63 years [33-86]. Twenty 

patients (53%) had digestive tumors and (60%) an 

ECOG PS score of ≥3; 14 patients (37%) had bone 

metastasis. Thirty three patients (87%) had pain at 

admission, with a mean pain intensity in last 24h of 3 

(±1, 9); 26 (68%) had BHP with a median intensity of 

8[2-10]. Strong opioids were used in 28 patients (74%). 

The most (88%) had partial control of the chronic 

pain. Patients were assessed for a median of 3 days [1- 

10], with total of 131 surveyed days. The cohort had 

40% of pain free days. IP was reported by 68% of 

patients, with a median intensity of 5[2-10]. Pain relief 

occurred in 63% of the days when stopping the 

movement; opioids were used in 47%, with decreased 

intensity in 80%. There was a positive correlation 

between baseline pain intensity and the IP by 

movement (ń=0,48; p< 0,01). Women, ECOG PS≥3, 

previous chronic pain, and use of opioids at baseline 

had more incidence of IP by movement (p< 0,05). 

Conclusion: IP induced by movement is frequent 

and difficult to control even in a PCU. Baseline pain 

characteristics, patients’ features and stage of disease 

affect IP intensity and control. 



Perioperative Pain Therapy for Cytoreductive 

Surgery with/without Hyperthermic 

Intraperitoneal Chemotherapy: Experience of 

a Single Tertiary Institution 

Lassen C.L. 1 , Bottler E.M. 1 , Meyer N. 1 , Glockzin G. 2 , Piso 

P. 2 , Pawlik M.T. 3 , Graf B.M. 1 , Wiese C.H.R. 1 

1 University of Regensburg, Anaesthesiology, 

Regensburg, Germany, 2 University of Regensburg, 

Surgery, Regensburg, Germany, 3 Caritas Hospital 

Regensburg, Anaesthesiology and Intensive Care 

Medicine, Regensburg, Germany 

Research aims: The perioperative anesthetic 

management of patients undergoing cytoreductive 

surgery (CRS) and hyperthermic intraperitoneal 

chemotherapy (HIPEC) for advanced cancer with 

peritoneal carcinomatosis has been previously 

reported 1 . The intention of the present study was to 

describe the perioperative pain therapy used at our 

institution for CRS with/without HIPEC. 

Study design and methods: We conducted a 

retrospective chart review of all patients who 

underwent CRS from 01/2008 until 07/2010 and were 

treated by the acute pain service (APS). We reviewed 

original patient charts as well as the electronical 

database system of the APS (MEDLINQ-Schmerzvisite) 

for demographic variables, pain values, side effects 

and additional medication. 

Results: We included 169 patients in our analysis. Of 

these patients, 163 were treated with patientcontrolled 

epidural analgesia (PCEA), 6 with patient- 

controlled intravenous analgesia (PCIA). The median 

of the duration of epidural catheter placement was 6.1 

days (range 0.7-24 days). Postoperative pain values (0- 

10) had a mean of 2.7 on the first and 2.4 on the 

second postoperative day for PCEA and 3.5 and 2.9 für 

PCIA groups respectivly. Serious adverse events such 

as epidural hematoma, infection or respiratory 

depression were not noted. Preoperatively 7 patients 

were taking opioid medication, 13 patients were 

taking non-opioid analgesics. 

Conclusion: PCEA is an effective and safe treatment 

option for patients undergoing CRS and HIPEC. In 

these patients, the quality of life is of main 

importance and correlates to pain control. Therefore 

we accept a longer duration of epidural catheter 

placement than usually recommended 2 . The 

preoperative use of analgesic medication in this study 

is lower than previously reported for patients 

scheduled for CRS 3 . 

Literature: 

1 Schmidt et al., Anaesthesia, 2008, 63, 389-395. 

2 Pogatzki-Zahn et al., Anaesthesist, 2009, 58, 914-926. 

3 McQuellon et al. Annals of Surgical Oncology 2003, 

10, 155-62. 



The Edmonton Classification System for 

Cancer Pain: Comparison of Pain 

Classification Features Across Diverse 

Palliative Care Settings in Eight Countries 

Nekolaichuk C.L. 1 , Fainsinger R.L. 1 , Aass N. 2 , Hjermstad 

M.J. 2,3 , Knudsen A.K. 3 , Klepstad P. 4 , Kaasa S. 3,5 , European 


1 University of Alberta, Division of Palliative Care 

Medicine, Department of Oncology, Edmonton, AB, 

Canada, 2 Oslo University Hospital, Regional Centre 

for Excellence in Palliative Care, South Eastern 

Norway, Oslo, Norway, 3 Norwegian University of 

Science and Technology (NTNU), European Palliative 

Care Research Centre, Department of Cancer Research 

and Molecular Medicine, Trondheim, Norway, 

4 Norwegian University of Science and Technology 

(NTNU), Intensive Care Unit, Trondheim, Norway, 

5 Trondheim University Hospital, Oncology, 


Introduction: There is no universally accepted 

system to accurately predict the complexity of cancer 

pain management. The Edmonton Classification 

System for Cancer Pain (ECS-CP) was developed from 

the original Edmonton Staging System for Cancer 

Pain (ESS) (1989) and the revised ESS (rESS) (2005). 

The primary objective of the study was to assess the 

generalizability of the ECS-CP in a diverse 

international sample. We hypothesized that the 

frequencies of pain classification features would vary 

across sites, with more acute palliative care settings 

having more complex pain features than less acute 

settings. The findings from this study are part of a 

larger recent international multicentre computerized 

symptom assessment study in advanced cancer. 

Methods: 1070 adult advanced cancer patients were 

recruited from 16 sites (palliative care inpatient and 

outpatient units, hospices, general oncology and 

medical wards) in Norway, the UK, Austria, Germany, 

Switzerland, Italy, Canada and Australia. 1051/1070 

were evaluable. A palliative care specialist completed 

the ECS-CP for each enrolled patient. Additional 

information, including pain intensity, symptom 

intensity, quality of life, performance status, cognitive 

status and patient demographics, were also collected 

using touch-sensitive computers. 

Results: 670 of 1051 evaluable patients (64%) had a 

pain syndrome (pain intensity ≥ 1). Nociceptive pain 

80%; Neuropathic pain 17%; Incident pain 61%; 

Psychological distress 32%; Addictive behavior 4%; 

Cognition normal 92%, impaired 7%, unable to 

classify 1%. Significant differences in the ECS-CP 

features between sites and countries will be presented. 

Conclusion: The ECS-CP is able to detect differences 

across diverse settings and countries. An 

internationally recognized cancer pain classification 

system would enable clinicians to better assess and 

manage cancer pain; report and compare research 

results; and allocate resources. 



Altered Thermal Thresholds in Patients who 

Are Prescribed Strong Opioids 

Isherwood R.J. 1 , Allan G. 2 , Joshi M. 3 , Colvin L. 3,4 , Fallon 

M. 4,5 









Research aims: Opioid-induced hyperalgesia (OIH) 

is increasingly being recognised as a clinically relevant 

phenomenon. This study observes patients on opioids 

over a period of months and uses validated tools to 

detect and describe the development of features 

suggestive of OIH. 

Study design and methods: Quantitative Sensory 

Testing (QST) provides a measure of calibrated force 

applied to the skin, thermal thresholds, pinprick 

sensation and the presence of wind-up. Sensation is 

tested at the site of the pain (index) and a control area. 

The Self-completed Leeds Assessment of Neuropathic 

Symptoms and Signs (SLANSS) is also used. A score of 

12 or above on the SLANSS suggests neuropathic pain. 

Results: Results from 20 patients prescribed opioids 

for cancer or non-cancer pain are presented. SLANSS 

scores were above 12 in 5 of the patients. Mean 

morphine equivalent daily dose was 266.4mg (range 

of 80 - 460mg). 

14 patients had altered thermal threshold at first 

assessment of which 12 had undergone dose titration 

in the week prior to assessment. At first assessment 13 

patients had increased sensitivity to cold (9 patients at 

the index site, 4 at both index and control sites). Two 

patients reported pain on testing for cold sensitivity. 

Eleven patients had altered heat threshold at initial 

assessment. Six patients reported increased sensitivity 

to heat (4 at index site, 2 at both index and control 

sites). Five patients had reduced sensitivity to heat. 

Six patients had a change of opioid prescription 

between assessments - change of opioid or dose or 

both. Five of the patients had a change in thermal 

thresholds at follow-up. Of the 14 patients who 

maintained their opioid prescription 10 had altered 

thermal threshold at follow-up. 

Detailed statistics will be presented. 

Conclusion: QST detects altered peripheral nerve 

function in patients who do not have clinical features 

of neuropathic pain and the findings may represent 

subclinical or emerging OIH. 



Potential Interactions of Transdermally 

Delivered Fentanyl with Inhibitors and 

Inducers of CYP 3A4-clinical and 

Pharmacokinetic Considerations 

Kotlinska-Lemieszek A. 1 , Biennert A. 2 , Grabowski T. 3 , 

Deskur-Smielecka E. 1 , Gorzelinska L. 1 , Sopata M. 1 , Baczyk 

E. 4 , Luczak J. 1 

1 Poznan University of Medical Sciences, Palliative 

Medicine Chair and Department, Poznan, Poland, 

2 Poznan University of Medical Sciences, Clinical 

Pharmacy and Biopharmacy Department, Poznan, 

Poland, 3 RAVIMED, Lajski Warsaw, Poland, 

4 University Hospital of Lord’s Transfiguration, 

Poznan, Poland 

Aims: to determine whether precipitants of CYP 3A4 

used in far advanced cancer patients treated with 

transdermal fentanyl may lead to significant 

interactions 

Methods: Patients with stable doses of transdermal 

fentanyl in whom there was the necessity to add a 

drug -inhibitor or inducer of CYP 3A4, and who gave a 

written consent, were included into the study. 

Symptoms, opioid-induced adverse-effects, drugs 

used and clinical status were evaluated. CBC, Na+, K+, 

Ca2+, albumine and creatinine level were assayed. 

Venous blood samples for fentanyl determination 

were drawn at 0, 6,12,18 and 24h before precipitant 

drug was implemented and then at 72, 78, 84, 90 and 

96 h of the study. Plasma concentrations of fentanyl 

were quantified by mass spectrometry. Data were 

analysed statistically. 

Results: Of 9 patients (aged 45-59, mean fentanyl 

TTS dose 72,2 µg/h) included in the survey 4 were 

given fluconazole, 3- dexamethasone, 1ciprofloxacin 

and another 1- carbamazepine. The 


number of drugs taken regularly by these patients 

including two studied drugs was 2 to 12 (mean 7). 

Opioid-induced adverse effects found in the patients 

were dry mouth and constipation. Their incidence 

and severity did not change after implementation of 

the concomitant drug. Steady state fentanyl 

concentration (Css) ranged between 0,273-3,823 

ng/ml and clearances (Cl) at baseline were 26,55- 

113,60 L/h. None of the concomitant drug did not 

significantly affect the mean steady state 

concentrations, area under the curve or clearance of 

fentanyl. 

Conclusion: In our group of patients precipitants of 

CYP 3A4 co-administered with transdermal fentanyl, 

did not significantly change its pharmacokinetics. 

The risk of clinically significant pharmacokinetic 

interactions of transdermal fentanyl with inhibitors 

and inducers of CYP 3A4 commonly used in far 

advanced cancer patients seems to be low. Further 

studies are awaited. 

Source of funding- Poznan University 



Characterization of Breakthrough Pain in an 

International Cohort of Cancer Patients 

Hagen N. 1 , Eliasziw M. 2 , Caraceni A. 3 , Haugen D.F. 4 , 

Kaasa S. 5,6 , Hjermstad M.J. 7 , on behalf of the European 


1 University of Calgary, Oncology, Clinical 

Neurosciences and Medicine, Calgary, AB, Canada, 

2 University of Calgary, Departments of Community 

Health Sciences / Oncology / Clinical Neurosciences, 

Calgary, AB, Canada, 3 Fondazione IRCCS Istituto 

Nazionale dei Tumori, INT, Rehabilitation and 

Palliative Care, Milan, Italy, 4 Norwegian University of 

Science and Technology (NTNU), Department of 

Cancer Research and Molecular Medicine, 

Trondheim, Norway, 5 Norwegian University of 


Care Research Centre, Dept. of Cancer Research and 

Molecular Medicine, Trondheim, Norway, 


Trondheim, Norway, 7 Oslo University Hospital, 

Regional Center for Excellence in Palliative Care, 

Department of Oncology, Oslo, Norway 

Breakthrough cancer pain (BTP) can be difficult to 

manage and is a prevalent and serious health issue. 

The objective of this study was to characterize features 

of BTP in cancer patients with advanced, incurable 

disease. 

The BTP study was part of an international project; inpatients 

and out patients from eight countries 

participated in a symptom study using a 

computerized patient assessment tool - with validated 

assessment measures. 

Among 989 evaluable patients, 301 (30%) reported 

having BTP within the 24 hours prior to answering 

the questionnaire, 393 (40%) had pain without BTP, 

and 295 reported no pain. A total of 296 BTP patients 

completed the Alberta Breakthrough Pain Assessment 

Tool. A majority (60%) reported BTP to be a brief flareup 

of their baseline pain; 58% reported having 3 or 

more episodes of BTP within the past 24 hours. Three 

most common triggers of BTP were ´walking´ (33%), 

´movement in bed´ (31%), and ´scheduled pain 

medication wearing off´ (28%). The three most 

common descriptors of BTP were áching´ (42%), 

´stabbing´ (36%), and ´tiring-exhausting´ (24%). The 

time from onset to peak intensity was under 10 

minutes for 43% of patients. More than twice as many 

BTP patients than those without BTP reported having 

severe or worse “average pain” (64% vs. 29%, p< 

0.001). The most common (51%) intervention for BTP 

was “as needed” medication and 33% achieved relief 

through scheduled pain medication. Good relief from 

BTP medication was achieved in 73% of patients and 

86% were satisfied with the effectiveness of their BTP 

medication, with onset of relief occurring (on 

average) at 27 minutes. The duration of BTP, from 

taking medication to resolution, was greater than 30 

minutes in 33% of patients. 

In conclusion, breakthrough pain is sudden, severe, 

and a highly prevalent problem in cancer patients 

with advanced, incurable disease. While many 

patients obtain relief with medications, a large 

proportion have prolonged BTP episodes despite 

analgesics. 



Improving Pain Management in Long Term 

Care: Canadian and Dutch Experiences 

Kaasalainen S. 1 , Zwakhalen S. 2 


2 Maastricht University, Maastricht, Netherlands 

Aims: Pain management in long term care (LTC) is a 

serious problem. Attention has been given to 

developing innovative ways to both assess and treat 

pain with a particular emphasis on residents who 

have dementia. The aim of this presentation is to 

provide an overview of some of the initiatives that 

have been undertaken in Canada and the 

Netherlands, both individually and jointly, related to 

improving pain management in LTC. As well, 

common barriers and facilitators to implementing 

these initiatives at the practice and policy levels will 

be discussed. 

Results: In Canada, work has focused on developing 

and evaluating innovative tools and processes to 

manage pain better in LTC. Efforts to explore and 

evaluate the emerging role of the nurse practitioner 

specifically related to pain management have been 

promising. Strategies to optimize the nurse 

practitioner role within an interdisciplinary team 

approach, as well as other dissemination strategies, 

continue to be explored. At the policy level, the 

development and implementation of provincial 

governmental regulations specific to pain 

management has recently occurred. In the 

Netherlands, supportive housing and nursing home 

care are major settings for the provision of LTC. The 

Netherlands are unique by having: 

1) formally divided institutionalised nursing home 

care into somatic and psychogeriatric wards; 

2) a multidisciplinary team including elderly care 

physicians and non-paramedics employed by the 

nursing home; both have enhanced pain management. 

Over the past decade, pain research in the Netherlands 

predominantly focused on the development and 

evaluation of observational tools for dementia 

patients, with a recent shift towards the uptake of 

strategies to assess pain in daily clinical practice. 

Conclusions: This presentation highlights some 

innovations that continue to be explored within 

Canada and the Netherlands, offering direction for 

ways to improve the way pain is managed for 

residents who live in LTC homes. 



Quality of Life in an International Cohort of 

Cancer Patients with and without 

Breakthrough Cancer Pain 

Hagen N. 1 , Eliasziw M. 2 , Caraceni A. 3 , Haugen D.F. 4 , 

Kaasa S. 5,6 , Hjermstad M.J. 7 , European Palliative Care 

Research Collaborative (EPCRC) 

1 University of Alberta, Oncology, Clinical 

Neurosciences and Medicine, Calgary, AB, Canada, 

2 University of Calgary, Departments of Community 

Health Sciences / Oncology / Clinical Neurosciences, 

Calgary, AB, Canada, 3 Fondazione IRCCS Istituto 

Nazionale dei Tumori, INT, Rehabilitation and 

Palliative Care, Milan, Italy, 4 Norwegian University of 

Science and Technology (NTNU), Department of 

Cancer Research and Molecular Medicine, 

Trondheim, Norway, 5 Norwegian University of 


Care Research Centre, Dept. of Cancer Research and 

Molecular Medicine, Trondheim, Norway, 


Trondheim, Norway, 7 Oslo University Hospital, 

Regional Center for Excellence in Palliative Care, 

Department of Oncology, Oslo, Norway 

Breakthrough pain (BTP), defined as a transitory 

increase in pain to moderate intensity or greater, can 

be difficult to manage in cancer patients. The 

objective of this study was to characterize BTP in 

relation to cancer patients’ quality of life (QoL), 

function, and symptoms. 

The BTP study was part of a large international 

project: Patients from eight countries participated in a 

symptom study using a computerized patient 

assessment tool, which used validated assessment 

measures, including the EORTC QLQ-C30 to assess 

health-related QoL. 

Among 989 evaluable patients, the mean age was 62 

years and 48% were women. Within the 24 hours 

prior to answering the questionnaire, 295 reported no 

pain, 301 reported having BTP, and 393 had pain 

without BTP. An ANOVA with orthogonal contrasts 



was used to compare group means. Cancer patients 

with pain had substantially worse scores on every 

functional and symptom scale of the EORTC QLQ- 

C30, compared to cancer patients with no pain (data 

not shown). The Table shows that BTP patients had 

consistently and significantly worse mean scores 

compared to patients with pain but not BTP. 

Measures BTP Pain BTP vs Pain 

(N = 301) without BTP without 

mean (SD) (N = 393) BTP 

mean (SD) (P-value) 

Global Health 39.3 (22.4) 46.8 (24.0)


(Friday) 




Cancer Neuropathic Pain: Prevalence and 

Associated Factors in the European Palliative 

Care Research Collaborative Computerised 

Symptom Assessment Study 

Rayment C.S. 1 , Bennett M.I. 2 , Aass N. 3 , Hjermstad M.J. 4 , 

Kaasa S. 5 

1 ST5 Palliative Medicine, Yorkshire Postgraduate 

Deanery, Leeds, United Kingdom, 2 Lancaster 



United Kingdom, 3 Department of Clinical Cancer 

Research, The Norwegian Radium Hospital, Oslo, 

Norway, 4 Oslo University Hospital, Regional Center 

for Excellence in Palliative Care, Department of 

Oncology, Oslo, Norway, 5 Norwegian Directorate of 

Health, Faculty of Medicine, NTNU, Trondheim 

University Hospital, Trondheim, Norway 

Aims: This study investigated the prevalence of cancer 

neuropathic pain and associated factors from a large 

European Symptom Assessment study. Our hypothesis 

was that compared to patients with clinician 

diagnosed nociceptive pain, patients with clinician 

diagnosed neuropathic pain have pain that causes 

more suffering and that requires more analgesia. 

Methods: 1051 patients with non-curable cancer 

from 16 countries completed 71 items on symptoms 

and quality of life on touch screen computers. 

Medical data were recorded by the physicians or taken 

from the charts. Pain type was a clinical diagnosis 

recorded on the Edmonton Classification System for 

Cancer Pain (ECS-CP). 

Results: 670 (63.7%) patients had pain; of these 534 

(79.7%) had nociceptive pain, 113 (16.8%) had 

neuropathic pain, and 40 (6%) could not be classified 

by ECS-CP. Within the whole sample, numbers of 

patients taking none, 1, 2, or 3 opioids were 26.8%, 

63.7%, 8.8% and 0.5% respectively. Patients with 

cancer neuropathic pain were significantly more 

likely to be receiving oncological treatment, suffer 

worse quality of life measured using EORTC QLQ C30 

(mean 74.4 vs 71.3), and have reduced performance 

status (mean 60 vs 67) compared to those with 

nociceptive pain. Neuropathic pain was associated 

with significantly greater use of adjuvants (44.2% vs 

25.1%), greater use of opioids (84.7% vs 71.8%), and 

was more likely to be treated with methadone or 

oxycodone. There were no differences between types 

with respect to pain intensity, breakthrough pain or 

psychological distress. 

Conclusion: Neuropathic mechanisms in cancer 

pain are associated with poorer quality of life and the 

need for more intense analgesic management. We 

found the prevalence of 17% for cancer neuropathic 

pain in this study to be lower than other published 

reports indicating the need for consistency in 

classification, diagnosis and assessment of cancer pain. 



Less Pain and Better Functioning Due to a 

Combination of a Pain Consult and Pain 

Education 

Oldenmenger W.H. 1 , Sillevis Smitt P.A. 2 , Van Montfort 

C.A. 3 , Van der Rijt C.C.D. 1 


Netherlands, 2 Erasmus MC, Neuro-Oncology, 

Rotterdam, Netherlands, 3 Erasmus MC, Biostatistics, 

Rotterdam, Netherlands 

Aim: Pain Education Programs (PEP) and a pain 

consult (PC) have been studied to overcome patient 

and professional barriers in cancer pain management. 

These interventions were only studied separately, 

with several methodological flaws. Only half of the 

studies described a significant effect on pain and none 

studied the effect on daily interference. Moreover, 

most PEP studies did not mention the adequacy of 

pain treatment. We compared PEP combined with PC 

versus standard care (SC) to study the effect on pain 

and functioning. 

Method: The RCT was set up as a 3-arm study in 

outpatients with cancer pain, to compare (1) SC, (2) PC 

by a pain specialist and (3) PC combined with PEP. PEP 

consisted of tailored pain education and weekly 

monitoring of pain and side effects. Because of slow 

accrual the design was changed in a 2-arm study that 

compared (1) to (3). The Brief Pain Inventory was used 

to measure pain and daily interference (BPI-I); 

adequacy of pain treatment was calculated using the 

Pain Management Index (PMI). The primary endpoint 

was an overall reduction in average pain intensity 

(API) over an 8-week period. Secondary endpoints 

were current pain intensity (CPI), daily interference 

and adequacy of pain treatment. 72 Patients were 

planned (α=0.029, β=0.80, one-sided t-test). 

Results: Group 1 and 3 included 37 and 35 patients, 

resp.; mean age 59 yrs (sd=11), 65% female. The 

groups were similar with respect to performance and 

underlying cancer. ń of patients with SC also got a 

pain consult. Pain reducing interventions and PMI 

did not differ between groups. The overall reduction 

in API was SC 1.13; PEP 1.95; p=0.03. The reduction in 

CPI was SC 0.67; PEP 1.50; p=0.016. The reduction in 

BPI-I was SC 0.61; PEP 1.08; p=0.01. 

Conclusion: The combined intervention 

significantly improved patients’ pain and daily 

functioning. However, as a pain consult was often 

used in SC and pain treatment was similar in the two 

groups, PEP seems the most effective intervention in 

this setting. 



Pain in Outpatients with Cancer - A Survey on 

Prevalence, Intensity and Barriers to 

Adequate Treatment in a German University 

Hospital 

Schuler U.S. 1 , Kramer M. 2 , Ruske J. 2 , Sabatowski R. 3 , 

Folprecht G. 4 , Schubert B. 5 

1 University Hospital Dresden, Palliative Care, 

Dresden, Germany, 2 University Hospital Dresden, 

Dresden, Germany, 3 University Hospital Dresden, 

University Pain Center, Dresden, Germany, 

4 University Hospital Dresden, Oncology Department, 

Dresden, Germany, 5 Hospital St. Joseph-Stift, 

Dresden, Dresden, Germany 

Aims: 

(a) Estimation of pain prevalence among cancer 

patients of an oncology outpatient clinic (OOC) in a 

German University Hospital, 

(b) identification of barriers to adequate pain 

treatment. 

Methods: In several surveys conducted on 

consecutive days in 2007 in the OOC patients were 

interviewed with a standardized? questionnaire 

(including HADS). 

Results: 350 patients were interviewed (median 62 

years, range 20-88; male/female 54/46%). In this 

population 48% suffered from pain (pain group, PG), 

either current pain (64%) or adequately treated pain 

(36%), ie, based on the total sample ~ 30% of 

respondents reported current pain. At the time of the 

interview 44 patients (12.6%) were without pain 

treatment in spite of pain. Within the PG 30% of the 

patients regarded the source of the pain to be tumorindependent.Patients 

in the PG scaled their average 

pain intensity on average to NRS 2.2 (scale 0-10), the 

maximum at 3.5. Both values were slightly higher in 

women, but women also had a higher projected limit of 

pain regarded as unbearable (5.6 vs.4.8). In 74% of the 

patients the average NRS score was ≤ 3, and 92% of the 

PG had a average score £ 5. HADS scores in the PG were 

above average as expected. Pain in the HADS showed a 

weak significant correlation with anxiety, but not with 

depression. In the subgroup with NRS ³4 only 24% 

asked for more intensified pain therapy. Reasons for the 

lack of desire for more intensive therapy (multiple 

answers on a Likert scale, “completely agree” and 

“partially agree” taken together, sum of answers > 

100%) were: Concerns about 

(a) addiction 38%, 

(b) physical side effects 67%, 

(c) mental/cognitive side effects 50%, 

(d) dislike of pills and syringes 28% and 

(e) desire to register warning signs of the body 15%. 

Conclusions: In this sample, pain plays a somewhat 

smaller role than expected. The treatment for a small 

group of patients remains to be optimized. 



Treatment Efficacy of Intrathecal Phenol 

Neurolytic Blocks for Cancer Pain 

Yo T. 1 , Morita T. 2 , Takada T. 3 

1 Seirei Mikatahara General Hospital, Seirei Hospice, 

Hamamatsu, Japan, 2 Seirei Mikatahara General 

Hospital, Department of Palliative and Supportive 

Care and Palliative Care Team, Hamamatsu, Japan, 

3 Seirei Mikatahara General Hospital, Department of 

Anesthesiology and Palliative Care Team, 

Hamamatsu, Japan 

Background: Intrathecal neurolytic phenol blocks 

can be effective analgesic strategy for refractory cancer 

pain, but there are no prospective large-scale 

intervention trials. The primary aims of this study 

were to determine the efficacy and safety of 

intrathecal neurolytic phenol blocks. 

Method: The inclusion criteria were adult cancer 

patients who required intrathecal neurolytic phenol 

block for refractory cancer pain in our institute from 

2002 to 2010. For each patient, we checked pain 

intensity on the Support Team Assessment Schedule 

(STAS) before and 1 week after the intervention and 

any adverse effects on the basis of retrospective chart 

review. Pre-post comparisons were performed with 

the paired Student’s t-test or McNamara test, where 

appropriate. 

Results: A total of 57 interventions for 40 patients 

were obtained, comprising 1.9% of all patients 

receiving specialized palliative care services during the 

study period. The main primary cancers were lung 

(35%), colonic and rectal (23%), and pleural 

malignant mesothelioma (13%). Pain location were 

thoracic and abdomen (70% in all), and leg, hip, and 

perineum (30% in all). Pain intensity measured on the 

STAS (2.65±0.6 to 1.48±0.8, P< 0.001) were 

significantly improved after interventions. Adverse 

effects occurred in 5.0% and all except one case were 

transient, one is continuous paresis of bladder and 

rectul function although this was a predictable and 

informed complication. 

Conclusion: Intrathecal phenol neurolytic blocks 

could contribute to the improvement of pain 

intensity without unpredictable serious side effects for 

highly-selected patients. 



Barriers in Pain Management in Georgia 

Abesadze I. 1 , Gvamichava R. 1 , Dzotsenidze P. 2 , Rukhadze 

T. 3 , Karbelashvili T. 1 , Kordzaia D. 4 

1 The Institute of Cancer Prevention and Palliative 

Medicine, Tbilisi, Georgia, 2 Tbilisi State Medical 

University, Tbilisi, Georgia, 3 National Cancer Center, 

Tbilisi, Georgia, 4 Georgian National Assosiation 

Palliative Care, Tbilisi, Georgia 

Research aims: Identifying barriers in Pain control. 

Study design: The survey was performed among 

physicians responsible for prescribing opioids and 

society (patients/families). Investigation was 

anonymous, there where no criteria as sex or age, only 

criteria was respondent´s connection with pain and 

its management. Total number of respondents 223 

(51 physicians, 69 patients and 103 family members). 

General questions regarding opioid accessibility were 

addressed. Physicians: 59% feels that high doses of 

opioid are not safe. 25% thinks opioids can induce 

drug dependence syndrome. 25% prefers to add 

another 1 step analgesic rather then to prescribe 

morphine. Patient/ family For pain relief 34% of 

patients addressed family doctors, 35% addressed 

oncological services and just 21% Palliative Care 

services; though in 42% of cases morphine was 

prescribed first by Palliative Care physicians. 76% 

declares that non opioid drugs weren´t effective; 42% 

- that opioids weren´t prescribed to them; 69% - that 

opioids were prescribed with delay. 61% declares 

problems in increasing the dose. 52% declares that 

pain is controlled with opioids. That indicates that in 

48% of patients opioids were prescribed inadequately. 

According to the survey 88, 5% of patients and 79% 

families declared that severe chronic pain had 

negatively impacted quality of life. Attitude About 

50% of patients/families hold opioids because of the 

fear to become drug dependence. 8% of physicians 

and 36% of patient/families think that morphine is 

the medication for last stage of cancer. In Georgia 

opioids are dispensed twice in a week from 

pharmacies located in a police station. According to 

survey, for 60% physicians and 87% of 

patients/families this rule is very uncomfortable. 

Because of that 27,5% refuses to receive opioids. 

Conclusion needs: Special education program in 

chronic pain management for family doctors / 

oncologists. Simplification of opioid dispense rules. 

Awareness/cultural change toward opioids. 




Prevalence of Neuropathic Pain Components 

in Patients with Cancer 

Schalkwijk A. 1 , Engels Y. 1 , Verhagen C. 1 , Abbink K. 1 , 

Oosterling A. 1 , Heijnen R. 1 , Van der Drift M. 1 , Van Ham 

M. 1 , Hekster Y. 1 , Vissers K. 1 



Introduction: More than 50% patients with cancer, 

independent of the stage of disease, experience pain. 

For optimal pain treatment it is important to 

differentiate between nociceptive and neuropathic 

pain. The prevalence of neuropathic pain is 7% in the 

general population and up to 40% of patients who 

visited specialized pain clinics. Time spend in 

outpatient consultation takes about 10 minutes, 

which is mainly used for direct cancer management. If 

there is time left, other topics can be discussed. So 

pain, and especially neuropathic pain, is often underdiagnosed 

and under-treated. 

Methods: All patients visiting the outpatients clinics 

of gynaecology, lung diseases and medical oncology 

received a questionnaire with the BPI, DN4 seven 

items, McGill Pain descriptors and recent medication. 

From electronic patient dossier the following data 

were collected: primary tumor, stage of disease, 

treatment, co-morbidities. According to the literature 

a DN4. 

Results: Data from the medical oncology outpatient 

clinic will be available in March 2011. Two hundred 

sixty-nine patients from gynaecology and lung 

diseases were included. Mean age was 58 (SD 15). 

Twenty-nine percent of the patients experienced 

moderate to severe pain. Most frequently mentioned 

DN4 symptoms were numbness 20% (n=51); burning 

19% (n=49) and pins and needles 18% (n=48). Fifteen 

percent (n=39) patients had DN4. 

Discussion: Until now, there is no information 

about the prevalence of neuropathic pain in a general 

outpatient population. Initial results seems to be 

lower than mentioned in the literature from specific 

cancer patient populations. Further analyses will be 

done on specific characteristics and correlation 

between treatment and neuropathic pain. 

≥ 3 is considered as neuropathic pain. SPSS 16.0 was 

used for analysis (descriptive statistics, students t-test). 

Significance level was P< 0,05.≥ 3. 



Breakthrough Cancer Pain: Patients’ 

Perceptions of Pain Characteristics and 

Current Management Strategies 

Bertram L. 1 , Stiel S. 2 , Elsner F. 2 , Radbruch L. 3,4 , Davies A. 5 , 

Nauck F. 6 , Alt-Epping B. 6 

1 HSK, Dr. Horst Schmidt Kliniken GmbH, Abteilung 

für Palliativmedizin / Innere Medizin III, Wiesbaden, 

Germany, 2 RWTH Aachen University, Department of 

Palliative Medicine, Aachen, Germany, 3 University 

Hospital Bonn, Department of Palliative Medicine, 

Bonn, Germany, 4 Malteser Hospital Bonn/Rhein-Sieg, 

Palliative Care Center, Bonn, Germany, 5 The Royal 

Marsden NHS Foundation Trust, Department of 

Palliative Medicine, Sutton, Surrey, United Kingdom, 

6 University Medical Center Göttingen, Department of 

Palliative Medicine, Göttingen, Germany 

Background: Approximately 80% of cancer patients 

receiving palliative care suffer from cancer pain, and 

again 80% of these patients report breakthrough pain. 

This study explores the patients’ perception of 

breakthrough pain, their experiences with existing 

therapeutic regimens and their expectations towards 

an ideal breakthrough pain medication. 

Method: From November 2008 to February 2010 two 

German palliative care units recruited 80 in- or 

outpatient cancer patients who completed a 

standardized questionnaire on breakthrough pain 

characteristics, analgesic medication, attitudes 

towards new treatment approaches for breakthrough 

pain, and experiences with alternative routes of drug 

administration as part of the “European survey of 

cancer patients’ experience of breakthrough pain“. 

Results: The study participants suffered from 1 - 12 

episodes of either incident (47.5%) or spontaneous 

pain (37.5%) per day which were perceived as “severe” 

in 71% of all cases. These exacerbations highly 

interfered with the patients’ general activity, mood, 

walking ability and normal work. Overall, 64% of the 

patients reported alleviation from pharmacological 

(26%) and non-pharmacological (73%) interventions. 

Subcutaneous (40%) and oral (39%) routes were used 

frequently; intranasal (1.25%) and intrapulmonary 

(1.25%) routes were used rarely. Only 64% of all 

participants stated an overall satisfaction with their 

breakthrough analgesia. 

Conclusion: The diagnosis and treatment of 

breakthrough pain seems to be conducted in a 

suboptimal manner, and standard recommendations 

on breakthrough pain relief are not consistently 

implemented. Possible causes of pain should be taken 

into account as well as multi professional treatment 

interventions and possible reluctance against 

alternative routes of administration of fast onset 

drugs. 

The study was supported by an educational grant 

from Nycomed. 



A National Survey of Breakthrough Cancer 

Pain Characteristics and Treatments 

Poulain P. 1 , Delorme C. 2 , Filbet M. 3 , Krakowski I. 4 , Serrie 

A. 5 , Ammar D. 6 , Morère J.F. 7 , Scotté F. 8 , Grangé V. 9 

1 Clinique de l’Ormeau, Palliative Care Department, 

Tarbes, France, 2 Etablisements Hospitaliers du Bessin, 

Palliative Care Department, Bayeux, France, 3 Centre 

Hospitalier Lyon Sud, Palliative Care Department, 

Pierre Bénite, France, 4 Centre Alexis Vautrin, 

Oncology Department, Vandoeuvre les Nancy, 

France, 5 Hôpital Lariboisière, Pain Center, Paris, 

France, 6 Institut Paoli Calmette, Pain Center, 

Marseille, France, 7 Hôpital Avicenne, Oncology 

Department, Bobigny, France, 8 Hôpital Europeen 

Georges Pompidou, Oncology Department, Paris, 

France, 9 Cephalon France, Maisons Alfort, France 

Breakthrough cancer pain (BTcP) is frequent in cancer 

patients (75%) and is still underrecognized and 

undertreated. This survey was aimed to evaluate BTcP 

prevalence and treatment 10 years after the initial 

survey published by Di Palma and coll 1 . 

Patients and methods: This prospective, national, 

multicenter survey was conducted from march to 

september 2010 in 45 centers treating painful cancer 

patients: Oncology, palliative care and pain centers, 

public or private. Practitioners evaluated during 1 

week all patients with severe cancer pain requiring 

opioids, using patient and observer-rated measures. 

Results: 512 patients, aged 62.1±13.3 (mean ± SD) 

were evaluated. Patients were male (52.1%), 

hospitalized (48.2%), in day care (18.1%) or 

ambulatory (33.7%). Primary cancer was mainly lung 

(27.0%), digestive (17.4%) and breast (16.4%). Cancer 

was metastatic for 83.4% of patients. Around the 

clock medication was morphine (26.1%), fentanyl 

(37.8%) or another opioïd (35.9%), and pain was 

adequately controlled for 61.1% of patients. Over a 

period of 7 days, BTcP were observed in 84.1% of 

patients. 44.4% presented 2 to 4 BTcP per day and 

22.6% more than 4 BTcP per day. Pain duration was 

less than 15 min (24.2%), from 15 to 30 minutes 

(40.7%), and more than 30 min (35.1%). Mean (SD) 

intensity of BTcP episodes was 7.1±1.7 (VAS). Only 

66.9% of patients treated BTcP with opioids: 

transmucosal (58.0%), intravenous (21.4%), oral 

(13.0%) or other (7.6%). Adequate and quick pain 

relief was achieved within 15 min for 60.8%. 59% of 

patients reported important impairment in daily life. 

Conclusion: Despite the large incidence of BTcP and 

its negative impact on quality of life, the management 

of BTcP remains inadequate and pain relief is not 

achieved after 15 min for 40% of patients. Use of 

Rapid Onset Opioïds (ROO) and both patient and 

practitioners education are needed. 

Référence bibliographique: 1 Di Palma M., Poulain P., Filbet M. 

and coll. Douleurs, 2005 ; (6, 2) : 75-80. 



The Role of Pamidronate in the Treatment of 

Cancer-induced Bone Pain in Squamous Cell 

Carcinoma of Head and Neck 

Rolski W. 1 , Kawecki A. 1 

1 Maria Skłodowska-Curie Memorial Cancer Center 

and Institute of Oncology, Head and Neck Cancer 

Department, Warsaw, Poland 

Introduction: Bone metastases infrequently occur 

in patients with squamous cell carcinoma of the head 

and neck (SCCHN) but because of severe bone pain 

and risk of skeletal related events are significant 

therapeutic problem. One of the important group of 

drugs that can inhibit development and progression 

of bone destruction and possessing analgesic effect are 



bisphosphonates. However the role of pamidronate in 

the treatment of SCCHN bone metastases was not 

explicitly determined. 

Aim of the study: The aim of the study was to assess 

the usefulness of pamidronate in treatment of bone 

pain in patients with SCCHN. 

Patients and methods: Forty one SCCHN patients 

with osteolytic bone lesions and cancer-induced bone 

pain were evaluated. All patients were treated with 

analgesics according to pain intensity. Palliative 

radiotherapy and chemotherapy received 18 (44%) 

and 11 (27%) patients, respectively. Patients were 

treated with 2-hours intravenous infusion of 60-90 

mg of pamidronate repeated every 3-4 weeks. Pain 

assessment was based on 11-point categorical Visual 

Analogue Scale (VAS) and performed after 

administration of each pamidronate dose. 

Results: Median number of pamidronate infusions 

in patients with bone pain was 6 (range, 2-31). In 

30/41 patients (73%) good analgesic effect was 

achieved (at least 2 points decrease of pain intensity 

[n=13] or decrease to less than 4 points in VAS 

[n=17]). Pamidronate was well tolerated and no 

serious adverse events were observed. Side effects were 

mild and disappeared within 1-2 days without 

treatment. 

Conclusions: Intravenous infusion of pamidronate 

combined with other analgesics and other methods of 

cancer treatment produce significant decrease of 

cancer-induced bone pain intensity in the majority of 

patients. Pamidronate treatment was effective and 

well tolerated even in case of long-term treatment. 

Additional studies to determine the best combination 

of pamidronate with other palliative therapies in 

patients with SCCHN are needed. 



The Use of Intrathecal and Epidural Analgesia 

in Patients with Severe Cancer Pain. A One 

Year Retrospective Survey 

Nordboe A. 1 , Blika T.M. 1 , Ottesen S. 1 

1 Oslo University Hospital, Ullevaal, The Palliative 

Care Unit, Dept. of Oncology, Oslo, Norway 

Introduction: 70-90% of patients with advanced 

cancer suffer from pain. In 5-15% of these cases, it 

may be difficult to obtain satisfactory pain relief with 

conventional systemic analgesics. The primary aim of 

this retrospective survey was to investigate whether 

spinal analgesia improved pain relief without causing 

intolerable side effects. Secondarily, we noted how 

many patients were able to ambulate to their homes. 

Methods: All patients receiving intrathecal or 

epidural analgesia in 2009 were registered 

chronologically with regard to cancer diagnosis, 

indication of use, pain relief and side effects, 

including impact on ambulation and complications. 

Standardized introduction of an 18 gauge epidural 

catheter was carried out, both intrathecally and 

epidurally. The catheters were tunnelled 

subcutaneously and connected via two bacterial filters 

to a CADD-system with PCA option, mostly infusing a 

mixture of bupivacaine and morphine, added or 

replaced by clonidine and fentanyl as needed. 

Results: A total of 63 catheters were introduced in 61 

patients, 42 intrathecally and 21 epidurally. The most 

frequent indications for treatment were severe 

nociceptive and neuropathic pain, limited to few 

segments caused by the primary tumour, or 

metastases from lung, breast, prostate, colonic or 

pancreatic cancer. Five patients experienced CSF 

leakage necessitating catheter replacement or 

removal. Intrathecal infection occured in one patient, 

who was successfully treated with antibiotics and did 

not require catheter removal.18 patients were 

discharged to their homes for a variable time period. 

Conclusion: The use of intrathecal and epidural 

analgesia in severe segmental nociceptive and 

neuropathic cancer pain, responding unsatisfactory 

to systemic analgesics, are safe and effective methods 

without serious side effects and complications, even 

in patients staying at home. 

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Hemibody Irradiation Technique for 

Treatment of Multiple Painful Bone 

Metastases 

Bayo Lozano E. 1 , Marquez Garcia-Salazar M. 1 , Ortega 

Rodriguez M.J. 1 , Delgado Gil M.M. 1 

1 Hospital Juan Ramon Jimenez, Radiation Oncology, 


Purpose: Bone metastases are the most important 

cause of cancer pain with consequent loss of quality of 

life for patients, which in many cases can be long 

survivors. Radiation therapy (RT) has proven to be the 

most effective treatment for metastatic bone pain 

control, but about 75% of patients needs treatment in 

other places in the space of one year. Therefore, in 

those patients with multiple painful metastases a 

wide-field technique irradiation (hemibody) would be 

indicated. 

Traditionally, hemibody technique has used standard 

field and conventional simulation, without regard to 

the homogeneity of the dose in the skeleton or dose 

reduction in critical organs. 

This paper aims to describe a methodology for widefield 

irradiation using virtual simulation and beam 

segmentation technique for treatment of multiple 

painful bone lesions. We present the results of this 

technique in pain control and toxicity in patients 

with multiple bone metastases 

Material and method: From July 2005 to May 

2010, 14 patients underwent wide-field RT with the 

technique described. Treatment fields were designed 

using a digital radiographic reconstruction from a 

virtual simulation. CT slices were acquired from the 

skull to the knees. The dose was 6 Gy for the upper 

hemibody and 8 Gy for the lower hemibody 

Results: Unlike the classical approach, this 

technique allowed for better dose distribution at the 

skeleton and locate organs at risk outside of the areas 

of high doses. All patients responded to treatment 

with a minimum reduction of VAS (Visual Analogic 

Scale) at 3 points. Only 2 patients required a new 

irradiation 6 months after hemibody RT. The acute 

toxicity was controlled with corticosteroids and 

antiemetics and did not exceed grade 2. 

Conclusions: Wide-field technique provides an 

important and lasting symptomatic relief with low 

toxicity. Adequate irradiation of the target is not 

compromised and allows the exclusion of critical 

organs of the curves of high doses improving 

tolerance. 



Pain and Anxiety Associated with Bone 

Marrow Aspirate and Biopsy: A Prospective 

Study on 152 Patients with Hematological 

Malignancies 

Cartoni C. 1 , Brunetti G.A. 1 , Tendas A. 2 , Niscola P. 2 , 

Morano S.G. 1 , Meloni E. 3 , Alimena G. 4 

1 Hospital Policlinico Umberto I, Hematology, Rome, 

Italy, 2 S. Eugenio Hospital, Hematology, Rome, Italy, 

3 Italian Association against Leukemias, Lymphoma 

and Myeloma (AIL), Roma, Italy, 4 University of Rome, 

Sapienza, Rome, Italy 

Aims: Pain is commonly reported by patients 

undergoing bone marrow aspiration and biopsy 

(BMAB), that is a distressing procedure, too. In order 

to verify a correlation between anticipatory anxiety 

and pain, those symptoms were evaluated in patients 

with hematological malignancies (HM) and 

submitted to BMAB. 

Methods: Pain and anxiety were assessed in 152 

adult HM patients with a median age of 54 yrs. BMAB 

was performed under local anesthesia with 10-20 mg 

of mepivacaine in the left and/or right posterior 

superior iliac crest. Intensity of anxiety before 

procedure and of procedure-related pain were assessed 

10 minutes before and 10 minutes after the 

procedure, respectively, with a numerical rating 

system (NRS) scale, ranging from 0 (no symptom) to 

10 (the worst). 

Results: Out of 152 patients, 34 pts. (22%) did not 

reported relevant pain. In 118 (78%) pain occurred, 

scored as mild in 63 (53%), moderate in 41 (35%) and 

severe in 14 (12%) among them, with a mean NRS 3 

value. Anxiety was experienced in 108 pts. (71%) with 

a mean anxiety NRS value of 4. By using a mean 

anxiety NRS value as cut off, all patients were divided 

into 2 groups: 81 patients low anxiety (NRS 0-4; mean 

NRS=1.22) and 71 patients with high anxiety level 

(NRS 5-10; mean NRS=6.55). Moderate to severe pain 

(NRS= > 4) occurred more frequently in patients (58%) 

with high anxiety level than those (17%) with low 

anxiety level (p< 0.001). Mean pain NRS was 1.99 and 

3.94 in low and high anxiety level group, respectively. 

Conclusions: Our study shows that 63% of patients 

reported no pain or only mild pain. Nevertheless, 37 

% of them suffered of an unacceptable moderate to 

severe BMAB-related pain and 65% of high level of 

anxiety. Of note, the degree of the anticipatory 

anxiety significantly correlated to the pain intensity 

experienced during the procedure. This finding may 

help clinicians to adopt pharmacological and nonpharmacological 

interventions in selected patients in 

order to reduce their suffering. 



Non-interventional Observational Study 

Using High Dose Controlled-release 

Oxycodone for Cancer Pain Management in 

Korea 

Koh S.J. 1 , Kim S.Y. 2 , Choi Y.S. 3 , Moon D.H. 4 , An H. 5 

1 Good Samaritan Hospital, Internal Medicine, 

Pohang, Korea, Republic of, 2 Kyunghee Univ. 

Hospital, Internal Medicine, Seoul, Korea, Republic of, 

3 Korea Univ. Guro Hospital, Family Medicine, Seoul, 

Korea, Republic of, 4 Sihwa Hospital, Internal 

Medicine, Seoul, Korea, Republic of, 5 Korea Univ., 

Biostatistics, Seoul, Korea, Republic of 

Background: Controlled-release oxycodone 

(OXYCONTIN Ò ) is commonly used for pain relief in 

cancer patients. However, there is little 

documentation about the use of high doses of this 

drug in cancer pain management. The purpose of this 

study was to investigate the clinical characteristics of 

cancer patients treated with high dose OXYCONTIN Ò 

for pain and the efficacy and safety of high dose 

OXYCONTIN Ò . 

Methods: We prospectively observed the use of 

opioids and adjuvant drugs for pain management, 

severity of pain, parameters associated with quality of 

life, and adverse effects in cancer patients treated with 

high dose OXYCONTIN Ò (≥80mg/day). Data from 

486 cancer patients on high dose OXYCONTIN Ò were 

collected from 44 hospitals during the period from 

February 2009 to March 2010. 

Results: Three hundred and nineteen patients 

treated with high dose OXYCONTIN Ò were followedup 

for 8 weeks. One hundred and fifty patients 

(47.0%) increased dose of OXYCONTIN Ò or added 

other opioids after 8 weeks, of these, 69.5% had 

uncontrolled pain, 15.3% were unable to eat, and 

6.8% had adverse effects. Twenty-eight patients 

(8.8%) switched to other opioids after 8 weeks and the 

NRS of the non-switched group and switched group 

are 4.2 and 5.3 respectively. One hundred and 

seventy-six patients (55.2%) increased their doses of 

OXYCONTIN Ò and the mean of their pain severity 

(NRS) was decreased 8 weeks later. (4.8 vs 3.7, p< 

0.0001). The quality of life index consisted of 

ambulation (4.1 vs, 2.9, p< 0.0001), daily activity (4.6 

vs 3.4, < 0.0001) and sleep (3.1 vs 2.4, p< 0.0104) were 

also improved without any change of adverse effects 

in patients who took increased doses (p=0.55). 

Conclusions: This Study suggests that the use of 

high dose OXYCONTIN Ò for cancer pain 

management is both safe and efficacious. Thus, better 

pain relief and improved quality-of-life can be 

achieved using higher doses of OXYCONTIN Ò . 



The Use of Novel T-shaped Device in 

Accelerating the Onset of Analgesia via 

Patient-controlled Intravenous Analgesia 

(PCIA) 

Oyama S. 1 , Okada N. 2 , Suda M. 2 , Tamai Y. 2 , Yamasaki 

K. 2 , Okuno S. 2 , Hanada R. 2 , Kawahara R. 2 

1 Nissay Hospital, Palliative Care Team, Osaka, Japan, 

2 Nissay Hospital, Anesthesiology, Osaka, Japan 

Background: Patient-controlled analgesia is a useful 

method for cancer pain management. However, 

patient-controlled intravenous analgesia (PCIA) has a 

slower onset of action than epidural analgesia because 

the standard method of connecting PCIA route in the 

middle of intravenous (IV) infusion creates a dead 

space between the IV canula and three-way stopcock, 

thus prolonging the onset of analgesia. We invented a 

T-shaped devise to accelerate the onset of analgesic 

effect via PCIA and examined the usefulness of this 

devise in this study. 

Methods: Unlike a three-way stopcock, the T-shaped 

devise is designed to directly connect to the IV canula 

with ease. The T-shaped devise is also made to 

connect to the infusion set and the PCIA route 

holding the medicine. In this study, we connected a 

PCIA delivery system to the T-shaped devise (type I) or 

to a three-way stopcock located in the middle of IV 

infusion (type II), and measured the time of dye 

arrival at the end of IV canula at 40 ml/hr infusion 

flow rate and at 5 ml/hr intermittent infusion rate of 

dye, as well as the space volume 3.1 ml from the threeway 

stopcock to the IV canula. The blood level curve 

was made and the peak level was calculated after 6 µg 

of intermittent fentanyl administration using 

computer simulation. 

Results: The delay in dye arrival was 3 sec in type I 

and 353 sec in type II. Peak blood level following 

fentanyl administration was 0.95 ng/ml immediately 

after its bolus injection in type I and 1.00 ng/ml 6 

minutes after in type II. 

Conclusions: The T-shaped devise may be useful in 

providing rapid relief of cancer pain by accelerating 

the onset of analgesia using PCIA. 



Are We Causing Pain? Iatrogenic Incident 

Pain Assessment in a Palliative Care Unit 

Gonçalves J. 1 , Costa A. 1 , Ferreira M. 1 , Carneiro R. 1 , 

Monteiro C. 1 , Serviço de Cuidados Paliativos do IPO-Porto 

1 Instituto Português de Oncologia do Porto, Serviço de 

Cuidados Paliativos, Porto, Portugal 

Aims: Incident pain (IP) can be triggered by external 

causes. IP related to medical and nursing procedures 

in palliative cancer patients has never been assessed. 

We evaluated IP induced by medical and nursing 

procedures in palliative cancer patients admitted to a 

palliative care unit (PCU). 

Methods: Patients admitted to a PCU were assessed 

with a questionnaire at admission and daily during an 

8 week period. Confused patients were excluded. Basic 

epidemiological data, ECOG performance status, 

primary tumor and metastasis location, baseline 

chronic pain characteristics and analgesic therapy 

were recorded at admission. The presence and 

intensity of pain were surveyed with hygienic care, 

subcutaneous/intravenous therapy, intravenous 

cannulation, blood glucose monitoring, 

paracentesis/thoracentesis and with catheters, stomas 

and wounds management. 

Results: The study included 38 patients with a mean 

age of 63±14 years; 55% were female; 53% had 

gastrointestinal tumors and 60% an ECOG 

performance status score of 3. Thirty three patients 

had pain at admission. Patients were assessed for a 

median of 3 days [1-10], with a total of 131surveyed 

days. IP with hygienic care was reported in 18% of the 

days, with a median intensity of 5.0. 

Subcutaneous/intravenous therapy administration 

was assessed for 101 days, causing pain in 40%, with a 

median intensity of 2.5. IP was reported in 8 of 20 

intravenous cannulations, with a median intensity of 

3.0. Blood glucose monitoring caused pain in 19% of 

the days (median intensity of 2.0). Catheters, stomas 

and wounds management induced IP in 35%, 20% 

and 17% evaluations, with a median intensity of 5.0, 

2.5 and 3.0, respectively. Five paracentesis and 2 

thoracentesis were performed, causing pain in the 

most (mean pain intensity of 3.0 and 6.5, 

respectively). 

Conclusion: Nursing and medical procedures may 

cause relevant IP to patients, therefore its benefits and 

harms must be always considered in a PCU. 



Palliative Radiotherapy for Bone Metastases. 

Evaluation of Treatment Response to 

Different Treatment Radiation Schedules. A 

Single Session of Radiotherapy: Comfortable, 

Practical and Effective 

Muñoz Carmona D.M. 1 , Delgado Gil M.M. 1 , Ortega 

Rodriguez M.J. 1 , Dominguez Rodríguez M. 1 



Introduction and objectives: Bone metastases are 

not only the most common cause of cancer-related 

pain, but palliative radiotherapy is prescribed most 

frequently to relieve symptoms. The objective of our 

study is to analyze the data from our series in terms of 

local pain control, level or response, total dose and 


fractionation used, median duration of response, 

reirradiation and reduced analgesic requirements. 

Methods and materials: We conducted a 

retrospective study, quantitative methodology, of all 

patients treated with palliative radiotherapy. For the 

analysis we use SPSS 16. We analyzed the effects of 

palliative radiotherapy from January 2005 to 

September 2010 on 295 patients with bone 

metastases. We evaluated patients treated with dose 

and fractionation schemes 8Gy/800 cGy, 

20Gy/400Gy, 20Gy/500Gy, 30Gy/300Gy, 

18Gy/600cGy. For the evaluation we have considered 

pain visual analog scale (VAS). We value the 

percentage of patients achieving response complete 

response (CR) and partial response (PR), as well as the 

distribution of maintenance of response over time. 

Results: 116 patients were evaluated (57% male-43% 

women). The median age is 62y. The primary tumor 

was 31% Breast ca, Lung ca 15.5%.The location of 

bone metastasis was in the spine. The most common 

dose and fractionation used were 8Gy/800cGy/1 

fraction. The % of patients who achieved response 

83%,no response 10%. The maintenance of response 

over time is 6 months in 43%. The 90% of patients did 

not need reirradiation. In 65% of patients could be 

made analgesia reduction. The VAS values at one 

month of radiotherapy were: 26% without pain, 50% 

mild pain. There were no differences in response or 

duration of responses to the various fractionations 

used. 

Conclusions: Radiation therapy is effective in 

controlling metastatic bone pain achieving a response 

rate of 83% with 8Gy/1 session. Responses have been 

achieved over 6 months in 43% of patients treated. 



Opioids in Pain Treatment in 46 PCUS: 

Prospective FCP* Italian Study 

Zucco F.M. 1 , Piovesan C. 1 , Guardamagna V.A. 1,2 , Sardo 

V. 1 , Putignani F.L. 1 , Moroni L. 2 




Palliative, Abbiategrasso, Italy 

Research aims: Monitoring Opioids treatment in 

Hospice and Palliative Home Care settings. 



PCUs), observational study. Data collection 

period/each patient: 5 weeks/Hospice pts (HO); 9 

weeks/Home Care pts (HOCA) or until death (“Exitus” 

pts). 

Results: 397 (52% men, 48% women; 90% over 55 

years-old; 98% cancer pts), 203 (51%) in HOCA, 188 

(47.3%) in HO and 6 in other assistance settings. 

Opioids were used in 84,1% of patients (Weak 

Opioids-WO: 19%; Strong Opioids-SO: 71%, Both in 

10%). SO were used in 80,8% of cases (84% in HO vs 

77.7% in HOCA). Morphine was the more frequently 

used (57,8% in HOCA vs 71,2%; Immediate Release-IR 

Morphine, parenteral or oral: 50.0% in HOCA vs 

57.1% in HO pts; Prolonged Release-PR: 7.8% in 

HOCA vs 14.1% in HO); Fentanyl (31.9% in HOCA vs 

20.9% in HO); Tramadol (28.3% vs 21.5%); 

Oxycodone (17.5% vs 9.8%); Buprenorphine (10.2% 

vs 14.7%); Codeine (7.2% vs 4.9%); Hydromorphone 

(3.6% vs 0.6%) and Methadone (0% in HOCA vs 2.5% 

in HO). Fentanyl and Buprenorphine were used 

mainly transcutaneously: Fentanyl TTS: 87.5% vs 

Transmucosal 12.5%; Buprenorphine TTS 90.3% vs 

Sublingual 9.8%). Tramadol was used mainly orally 

(61.3% of cases). Methadone, Codeine, 

Hydromorphone and Oxycodone only orally. 

“Opioid Rotation” was observed in 20,1% of all pts 

(25.8% in HO). Opioid solutions by continuous 

infusion was used in 45.2% of pts (31.9% HOCA vs 

58.9% HO), mainly by an elastomeric system (37.1%) 

or by an electromechanical infusion device (20.5%). 

Conclusion: Opioids are widely used in Palliative 

Care Units in Italy, both in Hospice and Palliative 

Home Care setting. 




400.000,00) 



Nurses´ Knowledge and Attitudes Regarding 

Cancer Pain Management in an Oncology 


Hamilton B.J. 1 

1 Saint Lukes’ Hospital, Palliative Care, Dublin, Ireland 

Background: According to the WHO it is estimated 

that approximately 9 million patients worldwide 

suffer pain due to cancer or its treatment. Yet cancer 

pain remains under recognized and under treated as 

general estimates indicate that more than 80% of 

people in pain receive inadequate pain relief. 

Approximately 33% of patients receiving treatment 

for cancer and 60-90% of patients with advanced 

cancer experience pain .The WHO has identified 

cancer pain as a major international problem and 

pain control has become a crucial element in the care 

of cancer patients. Despite this pain is still a grossly 

under treated symptom of acute and chronic illness. 

Studies have shown that countries with well 

established palliative care services score higher in 

terms of cancer pain management compared with 

countries which either have no formal palliative care 

services or recently established services. The setting 

where this researcher works is the only tertiary 

oncology centre in the Republic of Ireland at present, 

making it a unique setting to carry out this type of 

research. 

Aims: The purpose of the present study is to examine 

the knowledge and attitudes of a sample of nurses 

working in an oncology setting regarding assessment 

and pharmacological management of cancer pain. 

Method: A validated questionnaire- Nurses´ 

Knowledge and Attitudes Survey Regarding Pain 

(NKASRP, acronym) will be used in this study. 

Results: Data collection is ongoing and will be 

completed in spring 2011. 

Conclusions: The data retrieved in this research will 

be used to improve and enhance the delivery of 

optimal pain management to our cancer patients. It 

may also serve as a blueprint for future educational 

initiatives. It is also hoped that this research will give 

us some insight into how nurses in Ireland compare to 

our European and North American counterparts with 

regard to assessing and managing pain. 



ALPHA (Algorithm with the Lists for 

Palliation by Helping Analgesia) for Palliative 

Care Team: A Consistency, Multicenter, 

Preliminary Study in Japan 

Yoshimoto T. 1 , Tomiyasu S. 2 , Tamaki T. 3 , Hashizume T. 4 , 

Murakami M. 5 , Murakami S. 6 , Iwase S. 7 , Saeki T. 8 , Matoba 

M. 9 , Symptom Control Research Group (SCORE-G) 

1 Chukyo Hospital, Palliative Care Team, Nagoya, 

Japan, 2 Nagasaki Municipal Hospital, Anestheology, 

Palliative Care Team, Nagasaki, Japan, 3 Hokkido 

University Hospital, Cancer Center, Palliative Care 

Team, Sapporo, Japan, 4 Akita City Hospital, Palliative 

Care Team, Akita, Japan, 5 Iwate Prefectural Ofunato 

Hospital, Palliative Care Team, Ofunato, Japan, 

6 National Cancer Center, Palliative Medicine, Tokyo, 

Japan, 7 University of Tokyo Hospital, Palliative 

Medicine, Tokyo, Japan, 8 Hiroshima University 

Hospital, General Medicine, Hiroshima, Japan, 

9 National Cancer Center, Palliative Medicine and 

Psycho-Oncology, Tokyo, Japan 

Aim: We developed ALPHA(Algorithm with the Lists 

for Palliation by Helping Analgesia)in 2010 for 

assisting the analgesia of untrained palliative-careteams 

(PCTs), because skilled PCTs are few in Japan. 

ALPHA has an overview diagram of a single-task 

algorithm including 5 principles in WHO analgesic 

guideline on the top page; each symbol in the 

diagram has a corresponding checklist of care items to 

help PCT make a clinical decision. As a safety test 

following a trial of ALPHA we needed to investigate 

retrospectively the consistency of the items with the 

interventions of accomplished PCTs. 

Method: By using a structured sheet related to the 

algorithm with the lists in ALPHA, we audited all the 

1 st referred cases during the initial week (d1-d7) of 

trained 6 PCTs in 2009. 

Result: 539 cases (mean age:60.9) in 6 institutions 

were evaluable. During the 1 st week the rate of the 3 rd 

step of WHO analgesic ladder increased from 66.0% 

to 87.6%; the severe pain decreased from 29.1% to 

2.2%. The consistency rates of interventions were 

accounted according to the diagram; 

(1) diagnosis of non-cancer pain: 9.5%, 



(2) disease modifying care:26.1%, 

(3) using 5 principles in WHO analgesic guideline:”by 

the ladder” 29.8%,”by mouth” 36.9%,”by the 

clock”61.0%,”for the individual”57.0%(mean doseescalation-index:1.5),”attention 

to detail”57.0%, 

(4) intervention for the opioid-resistant 

pain(e.g.,neuralgia):34.5%(mean day :2.0), 

(5) psychological approach(e.g., anxiolytic care) 

:9.6%(mean day:3.2). 

Conclusion: Our multicenter survey related to 

ALPHA showed how the skilled PCTs coped with 

referred cases in poor pain control, especially make 

effective use of WHO analgesic guideline for the 1 st 

time in Japan. We speculate that a single-task design 

of ALPHA is valid because of this consistency study 

and ALPHA could visualize the appropriate 

interventions with clarity and efficiency used by 

untrained PCTs. 



Patient Acceptability of Fentanyl Sublingual 

Tablet for the Treatment of Breakthrough 

Pain in Patients with Cancer 

Howell J. 1 , Lenneras B. 2 , James L. 1 , Duberg M. 3 

1 ProStrakan Group, PLC, Clinical Development, 

Galashiels, United Kingdom, 2 Sahlgrenska Academy, 

Gotherburg, Sweden, 3 Orexo AB, Uppsala, Sweden 

Background: Transmucosal fentanyl preparations 

are a suitable choice in managing breakthrough pain 

(BTP) because of rapid absorption and quick onset of 

pain relief. Several preparations have been developed, 

including buccal effervescent, lozenge, buccal film, 

intranasal, and sublingual orally disintegrating tablet. 

Aim: To determine patient acceptability/compliance 

of fentanyl sublingual tablet (ST). 

Design: 11opioid-tolerant patients with cancer pain 

were given 3 doses (100 mcg, 200 mcg, and 400 mcg) 

of fentanyl ST on individual days separated by at least 

1 day. A questionnaire was given after each dose to 

evaluate acceptability: taste and pleasantness; nature 

and strength of any sweet, sour, bitter, or salt taste; 

tendency to gag or vomit; aftertaste; and whether the 

patient would take fentanyl ST long term. 

Results: Patients reported the taste of fentanyl ST as 

‘tasteless’ or ‘virtually tasteless and acceptable’ 85% of 

the time, ‘pleasant’ 8% of the time, and ‘unpleasant 

but acceptable’ 6% of the time. With respect to the 

nature and strength of any sweet, sour, bitter, or salt 

taste, patients reported that it was ‘tasteless’ 29% of 

the time, and the other responses primarily reflected a 

moderately sweet taste. There were no reports of a 

tendency to gag or vomit. In 60% of occasions, there 

were reports of no aftertaste; for the other 40% of 

cases, the maximum intensity of aftertaste was ‘mild’ 

and lasted 1 to 30 minutes. All 11 patients provided at 

least one response to the question on ‘taking fentanyl 

ST long term’. In total, there were 27 reports and 

100% said ‘yes’ to taking fentanyl ST long term. 

Conclusions: Most patients reported some taste 

and/or aftertaste related to fentanyl ST. The taste was 

not stronger than ‘mild’ in intensity and all patients 

reported that they would be willing to continue 

treatment long term. These results suggest that 

fentanyl ST would be acceptable to patients being 

treated for cancer-related BTP. Study supported by 

Orexo, AB. 



Evaluation of CT-guided Nerve Root Blocks 

from a Technical Standpoint 

Nakatani T. 1 , Hashimoto T. 1 , Saito Y. 1 

1 Shimane University Hospital, Anaesthesiology, 

Palliative Care Centre, Izumo, Japan 

Introduction: Physicians generally use various 

medications to reduce cancer pain in accordance with 

the WHO three-step analgesic ladder. Pain clinicians 

also use nerve blocks to relieve pain. Nerve root blocks 

by radiofrequency ablation are useful for reducing 

nociceptive impulses from cancer lesions. 

Technically, however, there are difficulties with 

block-needle insertion in a precise direction and 

reaching a nerve root without severe complications. 

Guidance employing simple X-ray has been 

necessary, but this only permits visualization of the 

block needle and bone structure. It is thought that the 

superior imaging qualities of CT will provide greater 

ease and safety as a guide for nerve root blocks. 

Aim: To evaluate the efficacy and safety of CT-guided 

nerve root block from a technical point of view. 

Methods: We retrospectively investigated CT-guided 

233 


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nerve root blocks done in our hospital. There were a 

total of 113 root blocks in 68 patients. Patients other 

than cancer patients were included. Checked data 

were as follows: The success rate of the nerve root 

blocks. Complications attributable to the treatment 

method, such as massive bleeding, infection, other 

organ puncture, or pneumothorax. Pain scores at 

nerve root stimulated by a block needle were recorded 

in 34 cases. In 5 cases, we were able to compare pain 

scores induced by CT-guided blocks with those from 

previous blocks using X-ray fluoroscopy. 

Results: All nerve root blocks were successfully 

performed with no serious complications. In the 5 

cases of score comparison, the CT-guided blocks 

tended to have lower pain-scores than the X-ray 

guided blocks. 

Conclusion: CT-guided nerve root blocks indicated a 

high success rate and few complications. We believe 

that this technique has the potential for wide clinical 

use. 



Opioid Dose and Survival of Palliative Care 

Cancer Patients: An Egyptian Experience 

Alsirafy S.A. 1 , El-Mesidi S.M. 1 , El-Sherief W.A. 1 , Galal 

K.M. 1 , Abou-Elela E.N. 1 , Aklan N.A. 1 

1 Kasr Al-Aini School of Medicine, Cairo University, 

Palliative Care Medicine Unit, Kasr Al-Aini Center of 

Clinical Oncology & Nuclear Medicine (NEMROCK), 

Cairo, Egypt 

Background and aim: Cancer pain control in 

Egypt remains largely inadequate as indicated by the 

very low opioid consumption figures. This is 

attributed to many barriers including unfounded fears 

about the use of opioids for cancer pain. One of these 

fears is that opioids, especially at higher doses, may 

shorten the survival of cancer patients. The aim of this 

study was to examine whether there is an association 

between opioid dose and survival of advanced cancer 

patients in Egypt. 

Methods: Retrospective review of the medical 

records of advanced cancer patients referred to an 

Egyptian palliative medicine unit over six months. 

Pain was managed according to the World Health 

Organization (WHO) guidelines for cancer pain 

management. The last prescribed opioid dose was the 

one taken into consideration. The opioid dose was 

expressed in milligrams of oral morphine equivalent 

per day (mg OME/d). Survival was calculated from the 

date of first referral to palliative care. 

Results: During the study period, 117 advanced 

cancer patients were eligible for analysis. Their 

median age was 53 years and the male to female ratio 

was 1:1. The commonest primary cancers were breast 

(17%), urinary bladder (14%) and lung (12%). The last 

prescribed opioid dose was ≥240 mg OME/d in 19 

(16.2%) patients, 60-< 240 mg OME/d in 39 (33.3%), < 

60 mg OME/d in 32 (27.4%) and none in 27 (23.1%). 

The median survival of patients who required ≥240 

mg OME/d was significantly longer than that of those 

who required 60-< 240 mg OME/d, < 60 mg OME/d 

and none (209, 152, 77, and 51 days, respectively; 

p=0.015). 

Conclusions: The results support that the use of 

opioids for cancer pain control following the WHO 

guidelines is not associated with shorter survival 

among Egyptian advanced cancer patients. Higher 

opioid dose was associated with longer survival, an 

observation that has been reported by others. Further 

research is needed to identify and overcome barriers 

to cancer pain control and palliative care in Egypt. 



Asking the Right Questions? Pain Assessment 

in a Regional Oncology Centre 

Horton P.G. 1 

1 Clatterbridge Centre for Oncology NHS Foundation 

Trust, Conway Ward, Wirral, United Kingdom 

Background: Patients receiving oncology 

treatments often experience complex pain requiring 

comprehensive assessment and an individualised 

management plan. Inadequate pain management can 

lead to further distressing symptoms and a reduction 

in quality of life. Research has demonstrated the 

importance of asking patients about their pain as part 

of a holistic assessment, but staff may feel 

inadequately trained to conduct the assessment. 

Aim: The aim of this audit was to assess the level of 

knowledge and confidence in assessing and managing 

pain amongst staff working at a regional Oncology 

centre in the United Kingdom. 

Method: Two questionnaires were distributed to 

doctors, Clinical Nurse Specialists and ward based 

nurses. The first explored the use of pain assessment 

tools, scoring systems, frequency of assessment, 

documentation of pain and prior learning about pain 

management. The second identified knowledge of 

policies/procedures, referrals to specialist palliative 

care, management of neuropathic pain, resources 

available for staff and non-pharmacological 

interventions. 

Results: The response rate for both questionnaires 

was 26%. Audit findings for the initial questionnaire 

identified inconsistencies in pain assessment, lack of a 

pain tool and poor documentation; fewer than half 

documented a patient’s pain score. 90% of 

respondents felt training in this area would be 

beneficial.The second questionnaire revealed that 

lack of knowledge and attitudes amongst staff 

influenced pain management practices. An MDT 

approach was considered a positive factor and a useful 

resource in pain management. 

Conclusion: The results provide a baseline of current 

practice and identify areas for education and 

development. The Trust has now introduced a 

palliative care link nurse programme and is exploring 

introduction of a pain assessment tool to establish 

pain assessment as one of the five vital signs. Audit 

findings would be used in conjunction with Quality 

in Nursing to improve patient experience. 



Trisomy 18 Referrals to a Paediatric Palliative 

Care Service: 10 Years in Review 

Hannon B.L. 1 , Jennings V. 1 , Molloy E. 2 , Twomey M. 1 , 

O’Reilly M. 1 

1 Our Lady’s Children’s Hospital, Palliative Medicine, 

Dublin, Ireland, 2 Our Lady’s Children’s Hospital & 

National Maternity Hospital, Holles Street, 

Neonatology, Dublin, Ireland 

Background: Trisomy 18 was first described in the 

1960s, independently by Edwards and Smith. It is the 

second most common autosomal trisomy in liveborn 

infants after trisomy 21. It is characterised by severe 

psychomotor and growth retardation as well as 

classical clinical features and cardiac defects. 

The median survival time is 19 days, with only 5-8% 

of children surviving their first year of life.Despite 

recognising that trisomy 18 is almost invariably 

associated with death in infancy or early childhood, 

there is a significant dearth of published information 

regarding the palliative care needs of these patients. 

Aims: The aims of this study were to assess the 

referral rate of Trisomy 18 to a Palliative Care service, 

to review the symptom burden and outcomes in 

terms of life expectancy and place of death. 

Design & methods: A retrospective chart review of 

all cases referred to our Paediatric Palliative Care 

service over a ten-year period (2001-2010). 

Results: 20 referrals were made to the service. Only 

one of the infants had a prenatal diagnosis of Trisomy 

18. All infants had classical physical characteristicsof 

Edwards syndrome, with cardiac defects present in a 

majority. 

The complex care needs of infants with Trisomy 18 

were reflected in the number of healthcare 

professionals involved, both in hospital and upon 

discharge home. 

The most common symptoms at time of referral were 

feeding problems, apnoeic episodes and 

dyspnoea/tachypnoea.Mean age at death was 64 days. 

Discussion: This is the first study to review the 

specific palliative care needs of infants born with 

Trisomy 18. 

Our data are reflective of the literature in terms of 

antenatal and delivery data; clinical features; 

symptoms and outcomes. 

A national database is needed to identify infants 

diagnosed with trisomy 18. Neonatal pathways for 

babies with Trisomy 18 should be developed to 

provide a framework for decision making and care 

planning, from diagnosis to bereavement support. 



Describing Spiritual Care (SC) within 

Pediatric Palliative Care (PPC) - An Ontologybased 

Method for Qualitative Research 

Stiehl T. 1,2 , Führer M. 1 , Borasio G.D. 3 , Kunzmann C. 4 , 

Schmidt A. 4 , Roser T.D. 1 

1 Ludwig Maximilians University, Interdisciplinary 

Center for Palliative Care, Munich, Germany, 

2 Evangelical Lutheran Church in Bavaria, Munich, 

Germany, 3 University of Lausanne, Centre Hospitalier 

Universitare Vaudois, Lausanne, Switzerland, 4 FZI 

Research Center for Information Technologies, 

Karlsruhe, Germany 

Background: SC for children and adolescents in 

PPC is an emotionally and professionally challenging 

task. Literature mainly turns to narratives to describe 

spiritual aspects in PPC that aim to develop a basic 

understanding,and also focuses on religious and 

known spiritual concepts of the death of children. 

The paper presents a methodology to use narratives of 

PPC as material for in-depth qualitative analysis. 

Data: 143 patient records form a Southern German 

PPC team are subject to thematic analysis. Within 

these records, PPC physicians, social workers and 

chaplains documented contacts with children an 

their families from 6-2004 to 8-2009. The 

documentation is divided into five parts: basic data, 

medical report, nursing, specifics (e.g. living will), 

social work. Although spiritual care is not explicitly 

addressed as a section of its own, spiritual, religious, 

and cultural aspects can be found throughout the 

records. 

First data review: Some documented expressions 

of families follow along the lines of well established 

spiritual concepts. Others show elements of a 

spirituality not easily allocated to any specific spiritual 

system; nevertheless, they support patient and family 

in case of PPC. Both types facilitate SC providers to 

easily relate to patient and family. 

Method: The study analyses these records with 

regard to spiritual iusses. It focuses on defining 

spirituality and the assessment of spiritual needs. The 

study develops a methodology based on ontology 

modelling in computer science that has previously 

been applied, e.g. to identifying and managing 

competencies in nursery care. 

All data relevant for cultural, religious, and spiritual 

aspects are collected and structured, leading to a 

comprehensive concept of spirituality in general 

within the PPC team. This ontology also helps to 

understand individual cases with a precise description 

of the spiritual situation of child, and the unit of care, 

indicating the need for individually designed spiritual 

interventions. 



Meaning in Life in Parents of Children in 

Palliative Home Care 

Antretter B. 1 , Fegg M. 2 , Kögler M. 2 , Borasio G.D. 3 , Führer 

M. 1 

1 Dr. von Haunersches Kinderspital and 

Interdisciplinary Center for Palliative Medicine, 

University Clinics of Munich, Coordination Centre 

for Pediatric Palliative Care, Munich, Germany, 


University Clinics of Munich, Munich, Germany, 



Objective: The construct of “meaning in life” (MiL) 

has become increasingly important in palliative care. 

Several meaning-focused interventions have been 

developed recently. The aim of this study was to 

investigate MiL and psychological burden in parents 

of children in palliative care (PC) and to compare the 

findings with a sample of adult patients in PC as well 

as with a representative sample of healthy Germans. 

Methods: In 2009 parents of children in specialized 

pediatric palliative home care were asked to complete 

the “Schedule for Meaning in Life Evaluation” (SMiLE). 

Respondents first list individual areas that provide 

meaning to their life before rating their current level of 

importance and satisfaction with each area. Overall 

indices of weighting (IoW, range 0-100), satisfaction 

(IoS, range 0-100), and weighted satisfaction (IoWS, 

range 0-100) are calculated. Additionally, interviews 

were performed on personal MiL and were analyzed 

qualitatively. The “Brief Symptom Inventory” (BSI) was 

used to evaluate psychological burden. 

Results: 17 parents completed the SMiLE. When 

compared to healthy individuals and PC patients, 


parents list less meaning-relevant areas (median 13 vs. 

9). They particularly list family and social 

relationship, as well as job and leisure. Parents´ IoW 

was 79.6±13.1, the IoS 75.3±16.3, and the IoWS 

76.0±17.1. In comparison, PC patients (n= 244) scored 

higher in the IoW 85.9± 9.8, but comparably in the 

IoS 73.9±18.4 and the IoWS 75.3±18.2. Healthy 

Germans (n= 977) scored higher in all indices (IoW 

85.5±12.3, IoS 82.8±14.7, IoWS 83.3±14.8). In the BSI, 

parents show a slightly increased psychological 

distress (GSI 59.2±11.1). 

Conclusions: In our study parents score in the range 

of PC patients for the IoWS and lower in all SMiLE 

indices compared to healthy individuals. The 

qualitative analysis of the interviews, the results of 

which will be presented at the congress, further 

deepened the understanding of MiL in parents caring 

for a child in PC. 



The Use of a Low Dose of Morphine in Treating 

Respiratory Distress in Children with Spinal 

Muscular Atrophy Type 1 

Renard M. 1 , Massy W. 1 , Frooninckx B. 1 , Ingelberts A. 1 , 

Dondeyne M. 1 , Ruysseveldt I. 1 

1 University Hospital Leuven Campus Gasthuisberg, 

Childrens Hospital - Peadiatric Palliative Home Care 

Team, Leuven, Belgium 

Spinal Muscular Atrophy type I (SMA type 1) is the 

most severe expression of lower motor neuron disease, 

characterized in early infancy by hypotonia, 

progressive bulbar weakness and respiratory 

impairment. Death results mostly before 24 months of 

age. Management of respiratory problems is a challenge 

but invasive and aggressive interventions are avoided. 

Research aim: We present a single center experience 

in the palliative support of these patients. The use of a 

low dose of morphine to prevent distress caused by 

hypoxia has never described. 

Study design and methods: Between 2003 and 

2010, 9 children were diagnosed with SMA type 1. 

One child was supported by BEPAP since the age of 14 

months and is still alive. All other patients were 

treated in non invasive way. Comfort care and good 

symptom control were the goals. The children died 

between the age of 6 and 21 months, seven at home 

and one in the hospital. 

Nasogastric tube feeding was started between 4 and 20 

months, antibiotics to treat infection and an 

anticholinergic agent to treat hypersalivation. 

In case of severe respiratory distress, morphine was 

started at a dose of 0,2 mg/kg/dose bid or tid, 

administered via nasogastric tube. The dose was raised 

progressively first in frequency, later in dose. If no 

comfort was attained, diazepam at a dose of 

0,1mg/kg/dose was associated. 

Results: No child experienced severe respiratory 

depression or drowsiness, neither by starting or 

raising the the morphine. Two children died of 

respiratory infection and five of progressive muscle 

weakness. Time between starting morphine and death 

ranged from 1 to 3,5 months. In none of these 

children morphine treatment accelerated death. 

Conclusion: Treating severe respiratory distress in 

children with SMA type 1 is a challenge. Low dosed 

morphine is effective and well tolerated in treating 

anxiety and distress caused by hypoxia and the feeling 

of suffocation. Starting low dose morphine did not 

accelerate the time of death in these children. 


Withdrawn 



‘Let’s Talk about Sex!’ A Study to Explore 

Sexual Needs Being Identified by Children’s 

Hospice Staff for Young People with a Life 

Threatening / Life Limiting Condition 

Koppenol C. 1 , Oliver D. 2 

1 University of Kent, Bexhill-on-Sea, United Kingdom, 

2 University of Kent, Centre for Professional Practice, 

Chatham, United Kingdom 

Introduction: An increasing group of physically 

disabled young people are exploring and expressing 

their sexual needs in residential settings like children’s 

hospices and with children’s hospice at home 

services. These needs may not always be recognised 

and addressed by the care staff. 

Aim: The aim of this research project was to explore 

experiences of Children’s Hospice staff when 

confronted with matters of sexuality and 

investigating the need for guidance on how to meet 

the sexual needs of young people with a life limiting 

or life threatening condition. The design was a 

qualitative study based on semi- structured telephone 

interviews with a cross section of Children’s Hospice 

staff across the United Kingdom to attempt a general 

perspective of the subject. 

Results: The results were that most staff expressed 

feelings of embarrassment when faced with matters of 

sexuality; however most of the nursing staff 

articulated it as their duty to address it. Nurses felt that 

they should include sexuality in their general 

assessment like any other domain explored. It was 

clear from the interviews that these discussions on the 

sexual needs in touch within the Children’s Hospices 

could lead to tensions with management of the 

institutions and within the general community. 

Conclusion: This study has shown that there is 

uncertainty amongst care staff due to lack of guidance 

and direction from the organisation’s management. 

Focussed teenage weekends and sleepovers would 

help addressing sexuality, intimacy and relationship 

in a more structured way when supervised by 

designated trained staff and volunteers and to avoid 

confrontation with other (younger) service users in 

the Hospice. It was felt that a tool to encourage 

discussion on this area of care would be helpful. At the 

national level Hospice membership organisations 

could support by raising awareness on sexuality to 

help the public understand that the sexual needs are 

part of the holistic approach of Hospice care. 



Gastrostomy Placement with an Introduction 

of Traditional Japanese Medicine in 

Neurologically Handicapped Children with 

Pathologic Gastroesophageal Reflux 

Kawahara H. 1 

1 Osaka Medical Center and Research Institute for 

Maternal and Child Health, Izumi, Japan 

Backgrounds: Neurologically handicapped (NH) 

children, such as severe cerebral palsy and multiple 

disabilities, are categorized as group-4 patients who 

should receive palliative care. They often show 

various symptoms caused by pathologic 

gastroesophageal reflux (GER). Although 

fundoplication was previously recommended in NH 

children, the usefulness of fundoplication has been 

recently questioned, because of limited efficacy and a 

high incidence of symptomatic recurrence. We have 

been performing gastrostomy placement alone 

combined with medical treatment using rikkunshito 

(TJ-43;Tsumura & Co, Japan), a traditional Japanese 

medicine, in those with pathologic GER. We herein 

report the outcomes of our treatment with traditional 

Japanese medicine. 

Materials and methods: Subjects consisted of 21 

NH patients (1-18 years) who were successfully 

nourished with nasogastric tube feeding. All 

underwent 24-hr pH monitoring before surgery to 

investigate the presence of pathologic GER, showing 

the time of esophageal acid exposure over 5 %. 

Gastrostomy placement was performed 

laparoscopically or by open surgery. 

Results: No significant operative complications were 

encountered in all. Among 19 patients who were 

followed up, no significant clinical changes were 

observed in 3 patients without reflux symptoms. A 

reduction in oronasal secretion and stridor was 

observed in 3 patients. Medical control of reflux 

symptoms was necessary in 10 patients and was 

successfully conducted in 9 using TJ-43, lansoprazole, 

and famotidine. One patient with Cockayne 

syndrome required continuous feeding via a 

gastrojejunal tube because of repeated emesis and 

intractable diarrhea. 

Conclusions: This retrospective study alludes to the 

efficacy of gastrostomy alone with medications, 

including rikkunshito and acid suppressive agents for 

the treatment of NH patients with pathologic GER. 

Traditional Japanese medicines show promise as a 

potent agent for treating pediatric patients requiring 






Counselling for Families where a Family 

Member Is Incurable Ill 

Jørgensen B.E. 1 , Mathiesen H. 1 , Neergård M.A. 1 

1 Århus University Hospital, Århus Sygehus, 

Department of Oncology, Århus C, Denmark 

Background: An important issue in palliative care is 

taking care of families where one parent has incurable 

cancer. A counselling concept, Children of 

Somatically Ill Parents, which focuses on support to 

such families has been adapted and implemented by 

our palliative team. The team also has bereavement 

support groups for children who have lost a parent, 

and it is our experience that there is a need for 

strengthening communication within families. 

Aim: The aim of this project was to explore wishes, 

needs and well being of children and parents in 

families where a parent is incurably ill. Furthermore, 

to consider if family oriented counselling gives 

helpful support to these families. 

Materials and methods: The theoretical frame of 

reference was based on a phenomenologic and 

systemic approach. In nine families three sessions 

where planned with parents, children and the whole 

family, respectively. The analysis was based on 

summaries of the sessions and a qualitative, 

descriptive approach was used. 

Results: The following main categories evolved: 

Parent-sessions: Normal everyday life 

Good moments 

Open-mindedness towards the children 

Children-sessions: 

Need of a healthy parent 

Worries about the future 

Feelings as anger, anxiety and sadness 

Problems with school 

Meaning of openness, close relationships and hobbies 

Family-sessions: 

Sharing expectations to everyday life and future 

Clarification of feelings 

Shared understanding of grief and closeness 

Conclusion: The study revealed importance of 

maintenance of everyday life in spite of feeling of loss. 

facing feelings with openness and accept in order to 

form a shared foundation for closeness and grief 

community spirit to make perspectives of the future 

more clear. 

Family oriented counselling was found useful to both 

children, parents and professionals. More research is 

needed to explore to what extent counselling prepares 

the family for the forthcoming loss. 



Pediatric Palliative Care Unit: First Two Year 

Experience 

Bernadá M.M. 1 , Dall’Orso P. 1,2 , Le Pera V. 2 , Bellora R. 2 , 

Dallo M.D.l.A. 3 , Carrerou R. 2 , Rocha S. 2 , Fernández G. 3 , 

González E. 2 , Capercchione F. 3 , Ferreira E. 2 , Guillén S. 2 , 

Fierro G. 2 

1 Facultad de Medicina Universidad de la República, 

Pediatrics Department, Montevideo, Uruguay, 2 State 

Health Servicies Administration - Public Health 

Ministry, Pereira Rossell Hospital Center, 

Montevideo, Uruguay, 3 Facultad de Medicina 

Universidad de la República, Medical Psychology 

Department, Montevideo, Uruguay 

In 2008, in the reference pediatric hospital, a Pediatric 

Palliative Care Unit (PPCU) was created. Objective: 

To present the first 2 year- experience of a PPCU. 

Methodology: Unit objectives: 

a) to improve quality of health care and quality of life 

of hospitalized children with life threatening or 

limiting conditions 

b) to improve pediatric staff palliative care (PC) 

competences. 

Human resources: interdisciplinary (mostly 

volunteer) team. Weekly meetings are held. Patients 

are discussed with a systematized clinical reasoning 

tool. Educational activities are developed. 

Results: 

Clinical work activities: interviews with patients and 

families, meetings with specialists and primary care 

physicians to define care objectives related to 

patient/family needs, procedures to assure social help. 

Population: 77 patients, medium age 3 years, disease 

group according to Himelstein: I) 4%, II) 19%, III) 7%, 

IV) 69%. 

Main physical problems: seizures (26), spasticity (9); 

respiratory infectious disease (11); swallowing 

disorders (29), constipation (6); difficulties with: 

235 


(Friday)


(Friday) 


nasogastric tubes (19), thraqueostomy (11), 

gastrostomy (12). 

Main psycosocial problems: anger, fear to death, fear 

to quality of life loss, guilt, family-staff 

communication problems, anxiety, depressive 

thinking, extreme poverty, single-parent families, lack 

of community support, lack of reference primary care 

physician. 17 patients have died, 5 at home. 

Teaching: PC was included in paediatric 

postgraduate curriculum. 5 interactive accredited 

workshops for 150 multidisciplinary pediatric health 

professionals developed. 

Conclusions: 

Achievements: interdisciplinary reference PPC team 

available; quality of care and decision making 

processes improved; PC formally introduced in 

educational agenda. 

Barriers to success: lack of official team recognition, 

lack of budget. 

Future perspectives: educational activities impact 

needs to be measured; ambulatory palliative care and 

national reference network needs to be developed. 



Children with Cancer in Palliative Care: An 

Ethnographic Study 

Lima R.G. 1 , Menossi M.J. 2 , Zorzo J.C. 2 , Research Group in 

Nursing Care Child and Adolescent Health 


Health Nursing, Ribeirão Preto, Brazil, 2 Hospital das 

Clínicas da Faculdade de Medicina de Ribeirão Preto 

da Universidade de São Paulo, Ribeirão Preto, Brazil 

The organization of health systems provides that 

palliative care is a privilege because its priority is to 

provide broad and individualized care in order to 

meet the needs of patients experiencing the death and 

dying process and also that of their caregivers. This 

study aimed to understand the experience of children 

with cancer and that of their families during the death 

and dying process based on the philosophy of 

palliative care. The interpretive anthropology and 

ethnographic method were used as theoretical 

framework. The study was carried out in a university 

hospital in the interior of São Paulo, Brazil. The 

participants were children with cancer and their 

families and data were gradually collected according 

to the drawn story technique in which children were 

asked to drawn three situations: an ill person; a family 

with an ill person; and the child her/himself with 

her/his family today. Interviews accompanied by 

genograms, ecomap and participant observation were 

used with family members. The process of collecting 

empirical material was carried out either at the 

hospital or at the participants’ households according 

to each situation. The results revealed that children 

did not perceive themselves continually ill during the 

process and participated in some important decisions 

such as: choosing the hospital where they would be 

hospitalized, practicing self-care and participating of 

leisure activities while experiencing palliative care; 

the parents sought support in religion to deal with 

suffering accrued from the imminent death of their 

children and to restructure their family and social 

lives after their children’s death. The results indicate 

the need to acknowledge children as beings capable of 

understanding the process they are experiencing, 

capable of expressing their needs, and have their 

wishes and choices met, participating in the decisionmaking 

process, and have their families included and 

supported in this stage of treatment. 



Are Children Just Small Adults? Reaching 

out… Pediatric Palliative Care 

Santos M.J. 1 , Mendes Branquinho J.C.D.C. 2 

1 Atlantida University, Sintra, Portugal, 2 São Francisco 

Xavier Hospital, NICU, Lisboa, Portugal 

The abstract aims to clarify underlying differences 

between pediatric and adult palliative care, rephrasing 

the importance of developing specific pediatric 

competencies and skills in palliative care, in order to 

best address the needs of newborns, children or 

adolescents and families facing a life limiting 

condition. 

This is a non empirical study, based on ethical 

reflection and an international bibliographic review. 

In the first part we will focus on the current situation 

of pediatric palliative care (PCC). Afterwards, we plan 

to underline some of the main differences between 

pediatric and adult palliative care. 

In several countries, PCC has developed later than 

adult palliative medicine and from pediatrics itself. 

According to the United Nations’ child rights 

convention and EAPC the professionals working in 

pediatrics should first and foremost be trained in the 

care of children and young people. 

No country has a national database identifying all 

children with life limiting conditions; which can 

explain why palliative care services currently available 

for PPC are still few, fragmented and inconsistent all 

over Europe (EAPC). 

PPC differs from adult palliative care in several 

developmental, physical, psychological, social and 

clinical aspects. PCC focuses on both child and family 

as a single subject of care. PCC is provided for longer 

periods: from diagnosis (combined with cure-oriented 

care) and through death and bereavement. PPC 

focuses on families’ quality of life. PCC considers and 

promotes a child’s development: respecting them as a 

community member. 

PCC is very different from adult palliative medicine. 

Therefore, for best addressing their developmental, 

physical, psychological, social and clinical specific 

needs, palliative care programs and teams should 

embrace pediatric specialists and promote the 

development of specific pediatric palliative care skills 

and competences. 



Monitoring the Provision of Care for Children 

with Cystic Fibrosis in a Pour Resource 

Country 

Davidescu D. 1 , Dracea L. 2 , Moise D. 3 

1 Pediatric Clinical Hospital Brasov, Respiratory 

Diseases, Brasov, Romania, 2 Transilvania University, 

Medical Faculty, Brasov, Romania, 3 Hospice Casa 

Sperantei, Pediatric In-Patient Unit, Brasov, Romania 

Background: In the 50’s the life expectancy for 

patients with cystic fibrosis (CF) was 4 or 5 years, 

sometimes patients being diagnosed after death. 

Today, because of evolved possibilities for diagnosis 

and treatment the life expectancy is situated between 

35 or 40 years. 

Aim: To lobby for development of specialized CF 

interdisciplinary teams by describing the actual 

situation in Romania for patients with CF and their 

needs. 

Method: Retrospective study reviewing the files of 

patients with CF, cared by the Clinical Pediatric 

Hospital and Hospice Casa Sperantei in Brasov, 

between 2005 and 2009 and analyzing the national 

literature in regard to the development of these 

services in Romania. The data collected and analyzed 

are: demographic data, frequency of clinical 

manifestations, types of services and the afferent costs. 

Results: In Romania there is 1 national CF 

coordinating centre in Timisoara with 5 specialized 

physicians appointed all over the country, one of 

them activating in Brasov district. Existence of a 

dedicated physician has increased the diagnosis of CF 

at a young age with number of cases growing in the 

researched period from 15 to 67. However mortality 

in early childhood (age of 5) remains high due to lack 

of proper multi-professional treatment combined 

with poverty. The costs for hospitalizing a CF patient 

are 3 times higher than the costs for the 

hospitalization of any patient with another 

respiratory problem. Compared with complex 

Palliative Care offered in home care setting, including 

all the necessary material and equipment, it is also 3 

times higher. 

Conclusions: The lack of continuity of care in 

between diagnosis and Palliative Care has direct 

impact on the survival rate. Although there is 

considerable spending for these patients, the care they 

receive at present is not addressing their needs and 

ideally there would be shifting in funding towards 

developing home care networks, with role in 

monitoring and caring for these patients. 


Withdrawn 



PEG Feeding Elderly Patients: Is it Safe? Is it 

Worthwhile? 

Fonseca J. 1 , Santos C. 1 , GENE - Grupo de Estudo de 

Nutrição Entérica 

1 Hospital Garcia de Orta, GENE - Grupo de Estudo de 

Nutrição Entérica, Almada, Portugal 

Rationale: Elderly (>65 years) dysphagic patients 

frequently need tube feeding for large periods. 

Endoscopic gastrostomy is the choice for long term (> 

30 days) enteral feeding. However, PEG placement is 

often delayed in geriatric patients for several reasons: 

(i) older patients have several comorbidities and there 

is a generalized assumption that PEG placement may 

be less safe 

(ii) families and physicians often doubt of the utility 

of a gastrostomy in elderly, assuming that life 

expectance is very short 

(iii) there is a controversy on tube feeding patients 

with Alzheimer and other causes of dementia. 

Many claim that we are tube feeding these patients 

too much and too soon. Most published data about 

PEG in older patients comes from dementia patients 

and is not centred in age criteria. The aims of our 

study were the retrospective evaluation of: 

1. Clinical data of PEG feeding elderly patients. 

2. Evolution and survival after PEG placement of PEG 

feeding elderly patients. 

Methods: From our first 377 PEG patients 

(1999/2010), we select: Group A ³ 65 years, Group B ³ 

80 years. Within each group, we analysed diagnosis, 

patient’s evolution, survival after placement, death or 

PEG removal. 

Results: Group A included 156 patients: neurological 

disease: 102; head and neck cancer: 47; others 

diseases: 7. Outcome: 70 patients are still under PEG 

feeding, 78 deceased, 6 resume oral feeding, 2 were 

lost for follow-up. Survival range from < 1 month to 8 

years (average: 15 months). 

Group B included 45 patients: neurological disease: 

34; head and neck cancer: 8; others diseases: 3. 

Outcome: 25 patients deceased, 19 are still under PEG 

feeding, 1 was lost for follow-up. No one resume oral 

feeding. Survival range from < 1 month to 4 years 

(average: 12 months). 

There were no procedure-related deaths. In both 

groups most of reduced survival cases were stroke 

patients. 

Conclusions: Our patients survived for a long time, 

proving that PEG feeding elderly patients is safe and 

worthwhile. 



Revealing the Enigma of Dying in Long Term 

Care through Death Reviews 

Molloy U.M. 1 , McQuillan R. 2 , Connaire K. 3 

1 St Francis Hospice, Nursing, Dublin, Ireland, 2 St 

Francis Hospice, Medicine, Dublin, Ireland, 3 St Francis 

Hospice, Education, Dublin, Ireland 

Background: In Ireland 20% of older people die at 

home, while most die in acute and long stay settings. 

Integration of palliative care principles and older 

person care is necessary to create a model of end of life 

care (EOLC) for older people. Death reviews were 

initiated as part of a quality improvement project 

aimed at improving end of life care in long stay 

community units. 

Aims and objectives: To evaluate EOLC delivered 

to residents in the unit or prior to transfer to the acute 

setting where death occurred within six weeks of 

transfer.To appreciate the complexity of EOLC in long 

term care. 

Description: The project nurse reviewed the 

resident’s chart, guided by Teno (1999) end of life 

tool. Permission was sought and obtained from each 

unit to participate in this quality initiative. The review 

meeting consisted of a reflection on the resident’s life 

in the community unit and care activities within the 

last forty eight hours of life. The review was facilitated 

by the project nurse and attended by all care staff A 

synopsis of documented EOLC provided the focus for 

the review. 

Evaluation: Death reviews facilitated staff to reflect 

on the strengths and limitations of the EOLC they 

provided. They provided a forum for discussion with 

regard to specific care issues, such as symptom 

management, spiritual care, family of care and the 

moment of death. They provided the opportunity to 

challenge their assumptions around EOLC. The 

review created awareness for the need for 


documentation of EOLC activities. Finally, the review 

provided a forum for expression of grief and loss staff 

encountered following the death of a resident. 

Conclusions: Death reviews have a value in long 

term care and are an opportunity for staff to value the 

care they provide as important in providing quality 

EOLC. The outcomes of the death review may 

potentially influence care planning from a resident’s 

admission to the unit. The death review may be used 

as an opportunity to focus for improving EOLC 

Practice. 



Perceived Competence among Nursing Staff 

Responsible for the Care of the Dying in Long 

Term Care Homes 

Brazil K. 1,2 , Kassalainen S. 3 , Kelley M.L. 4 , Seven P. 4 , 

McAiney C. 3 , Gaudet A. 4 

1 McMaster University, Clinical Epidemiology and 

Biostatistics and Division of Palliative Care, 

Department of Family Medicine, Hamilton, Ontario, 

ON, Canada, 2 St. Joseph’s Health System, Hamilton, 

ON, Canada, 3 McMaster University, Hamilton, ON, 

Canada, 4 Lakehead University, Thunder Bay, ON, 

Canada 

Background: Research has revealed that in long 

term care (LTC) homes there is commonly poor 

control of pain, frequent hospitalizations, inadequate 

advanced care planning and communication, and 

family dissatisfaction with care at the end of life. The 

purpose of this to study was to assess nurse’s 

knowledge and confidence in their ability to provide 

end-oflife care 

Method: Nurses in four LTC homes located in the 

province of Ontario, Canada, completed a 

questionnaire that included the Palliative Care Quiz 

for Nurses (PCQN) and the Self-Efficacy in End-of-Life 

Care Survey (S-EOLC). The contents of the PCQN 

includes; 

a) philosophy and principles of palliative care; 

b) management of pain and other symptoms; and 

c) psychosocial aspects of care. The S-EOLC assessed 

respondent confidence in; 

a) patient management, 

b) communication, and 

c) multidisciplinary teamwork. 

Results: Sixty-nine nurses (58% participant rate) 

completed the questionnaire. The mean percentage of 

correct responses across the four facilities on the 

PCQN was 60.2%. Considerable differences were 

noted between facilities on some knowledge items. 

Specifically on the management of pain and other 

symptoms. Responses for questions in the S-EOLC 

ranged from 0 (cannot do it at all) to 7 (Certainly can 

do) with responses being high across the three 

assessed domains; patient management (6.10), 

communication (5.59) and multidisciplinary 

teamwork (5.48). Variation on S-EOLC scores was also 

noted across the participating facilities. 

Conclusions: Study findings revealed site specific 

differences on both measures highlighting how 

organizational conditions influenced staff perceived 

competence on end-of-life care. The findings 

emphasized the importance of identifying 

organizational specific strategies to improve end-oflife 

care in long term care homes. 

Funding: Social Sciences and Humanities Research 

Council 



Family Satisfaction with End-of-Life Care in 

Dementia in the Netherlands and Israel 

Boogaard J.A. 1 , Van der Steen J.T. 2 , Werner P. 1 , Zisberg A. 3 

1 University of Haifa, Gerontology, Haifa, Israel, 2 Vrije 

Universiteit Amsterdam, EMGO Institute, 

Amsterdam, Netherlands, 3 University of Haifa, 

Nursing, Haifa, Israel 

Background: Family caregiver evaluations are 

helpful in assessing the quality of end-of-life (EOL) 

care in advanced dementia. The aim of this study was 

to examine and compare family satisfaction with EOL 

care in two cultural settings differing in the 

aggressiveness of care (with Israel more aggressive 

than the Netherlands). 

Methods: Participants were family caregivers of 

dementia patients in Dutch and Israeli nursing homes 

(N=372 and 181 respectively). Volicer’s End-of-Life in 

Dementia Satisfaction with Care (EOLD-SWC) and 

Barry’s Decision Satisfaction Inventory (DSI) were 

used to measure satisfaction with the decision-making 

process and with the final decision. Using these scales 

as the outcome variable, nationality was included in 

regression analyses and adjusted for possible 

differences in patient characteristics, including 

symptom burden, assessed by the End-of-Life in 

Dementia Symptom Management scale (EOLD-SM), 

and dementia severity, assessed by the Bedford 

Alzheimer Nursing Severity-Scale (BANS-S), as well as 

family caregiver characteristics (age, gender, 

educational level and relationship with the patient). 

Results: Respondents were 64% female with a mean 

age of 60 years. Adjusted analyses showed that 

nationality was unrelated to the EOLD-SWC, while 

patients’ lower symptom burden was significantly 

associated with the EOLD-SWC. Nationality was not 

related to the DSI satisfaction with the decisionmaking 

process subscale, nor was any other variable. 

The DSI satisfaction with the decision subscale 

showed significant associations with nationality and 

symptom burden, as Dutch respondents and families 

of patients with lower symptom burden reported 

more satisfaction with medical decisions. 

Conclusion: Family satisfaction with medical 

decisions was found to be better in Dutch than in 

Israeli families, whereas there were no differences 

found in other satisfaction measures. Patients’ 

symptom burden was related to families’ evaluation 

of the processes of dementia care. 



Accreditation of Care Homes Undertaking the 

Gold Standards Framework (GSF) Care Homes 

Training Programme 

Thomas K. 1 , Stobbart-Rowlands M. 1 

1 The Gold Standards Framework Centre, Shrewsbury, 


Aims: To ensure that Care Homes undertaking the 

GSF Training Programme are consistently meeting the 

required standard of care for resident approaching the 

end of life, using a validated accreditation process. 

Method: The Gold Standards Framework Training 

Programme is a one programme with six workshops 

and comprehensive resources, Good Practice Guide, 

DVDs and local facilitation. Care Homes applied for 

accreditation from various parts of the country up to 

50 per six month period. 

Use of the online After Death Analysis (ADA) Audit 

Tool for 5 patient deaths before and after training and 

in at accreditation. 

Self assessment against a check list of 20 quality 

standards that have been taught throughout the 

training programme. 

Compilation of a detailed portfolio providing 

evidence of achievements of all 20 standards. 

A visit by an independent objective GSF assessor to 

assess the more qualitative aspects of care including 

consistency of implementation, cascade to all staff, 

feedback from residents and families and impression 

of the cultural transformation of the Care Homes. 

Findings from all these area are collated and put before 

an independent panel of quality assessors supported 

by Age UK. Decisions are made by the panel and 

awards include pass, commend, or beacon, or to defer 

with recommendation for further improvement. 

Accreditation lasts for 3 years with annual appraisal 

Results: About 250 homes have currently gone 

through the GSF care homes accreditation process of 

which about 25% have been deferred. The accredited 

homes have been included on a publicly available 

database and are becoming known as centres of 

excellence. Other care homes visit the accredited 

homes and ambassadors attend GSF training 

workshops encouraging others and help to develop a 

national momentum of best practice foe all residents 

nearing the end of life. 



Drawing up a Methodology for Creating 

Geriatric Palliative Care Model Tailored to 

Georgian Reality 

Kordzaia D. 1 , Rukhadze T. 1 , Velijanashvili M. 1 , 

Dalakishvili S. 1 


Tbilisi, Georgia 

Incorporation of Palliative Care (PC) into Georgian 

National Healthcare System has been methodically 

implemented during the recent years. On April 3 rd , 

2009 National Coordinator of PC Programs, Georgian 



National Association for PC and Department of 

Gerontology and PC made a presentation to the 

Healthcare and Social Issues Committee of Parliament 

of Georgia (HSICPG) on “National Model of Palliative 

Care and Ways of its Funding”. It was resolved that 

financing of Geriatric Palliative Care National Model 

(GPCNM) will be reviewed by the government only 

upon its scientific justification. 

Aims: To determine necessary circumstances for 

creating GPCNM in Georgia. 

Study design and methods: 24 persons involved 

in the field of management and practice of Healthcare 

and Social Services have been invited, including the 

officers of the Ministry of Health and HSICPG, social 

workers, University faculties of Justice, Economics 

and Sociology, experts of Gerontology and Geriatric 

Medicine. They were given a list of matters drawn up 

by the National Board of Gerontology, related to 

health care and quality of life for older adults. The list 

included 41 components. The invited people had to 

point out the components they considered essential 

for designing GPCNM. A component was considered 

significant if it was pointed out by more than 60% of 

the participants (15 persons). 

Results: It was decided that scientifically approved 

GPCNM Geriatric Palliative Care National Model 

mainly has to be influenced by: 

Distribution of elderly population by country districts 

Structure of illnesses in elderly population 

Social-economic condition of elderly population 

Medical defiance of elderly population (insurance 

companies and federal programs)Legislative and 

Social security of elderly population 

Conclusion: Research of all above mentioned factors 

will formulate the necessary predictors for creation of 

GPCNM. 



Communication in Dementia Care. Results of 

a Systematic Review 

Eggenberger E. 1 , Heimerl K. 1 , Bennett M.I. 2 

1 University of Klagenfurt, IFF- Faculty for 

Interdisciplinary Research Vienna, Department of 

Palliative Care and Organizational Ethics, Vienna, 

Austria, 2 University of Lancaster, International 

Observatory on End of Life Care, Division of Health 

Research, Lancaster, United Kingdom 

Background: Caring for and caring about people 

with dementia requires specific communication skills 

in all possible settings in which people with dementia 

live and die. 

Aims: This review identifies all interventions to 

enhance communication in dementia care that have 

been examined. We define an intervention as 

communication skills training or educational 

program directed not only at professional but also 

family carers in any kind of setting. 

Methods: We searched nine computerised databases 

from inception to October 2009 for scientific articles 

in both English and German. We analysed the 

effectiveness of skills trainings for several patient and 

carer relevant outcomes. We examined training 

methods, content of communication incentives and 

additional organisational features. We defined 

different types of trainings. 

Results: This review includes fourteen trials 

allocating 1454 persons with dementia, 903 

professional caregivers and 612 family caregivers. 

Nine studies were randomised controlled trials, two 

were clinical controlled trials and three were before 

and after studies. The majority of studies were carried 

out in the US, two in the UK and three in Germany. In 

terms of setting, nine studies took place in nursing 

homes, whereas five studies were located in a home 

care setting. No study could be found in an acute care 

setting. Detailed results, outcome and content 

analysis will be presented at the conference. 

Conclusion: This review shows that communication 

skills training in dementia care improved the quality 

of life and wellbeing of people with dementia. 

Professional and family caregivers´ communication 

skills, competencies and knowledge increased 

significantly. However, in acute care settings as well as 

in palliative care settings training trials are highly 

required to establish a beneficial way of relating to 

people living and dying with dementia. 

237 


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Palliative Care for the Geriatric Patient in 

Europe: A Survey Describing the Services, 

Policies and Legislation and Associations in 

Geriatric Palliative Medicine 

Piers R. 1 , Pautex S. 2 , Curale V. 3 , Pfisterer M. 4 , Van Nes M.- 

C. 5 , Rexach L. 6 , Ribbe M. 7 , Van Den Noortgate N. 1 

1 Ghent University Hospital, Department of Geriatric 

Medicine, Ghent, Belgium, 2 Geneva Medical School 

and University Hospital, Division of Palliative 

Medicine, Department of Rehabilitation and 

Geriatrics, Geneva, Switzerland, 3 Galliera Hospital, 

Acute Care for Elders Unit, Department of 

Gerontology, Genoa, Italy, 4 Evangelishes 

Krankenhaus Elisabethenstift, Klinik für Geriatrie, 

Darmstadt, Germany, 5 CHR De La Citadelle, 

Department of Geriatric Medicine, Liège, Belgium, 

6 University Hospital Ramón y Cajal Madrid, Palliative 

Care Unit, Madrid, Spain, 7 VU University Medical 

Center, Amsterdam, Netherlands 

Background: Knowledge about the quality of endof-life 

care in the elderly patient in Europe is 

fragmented. The European Union Geriatric Medicine 

Society (EUGMS) Geriatric Palliative Medicine (GPM) 

Interest group set as one of its goals to better 

characterize geriatric palliative care in Europe. 

Objective: To map the existing palliative care 

structures for geriatric patients, the available policies 

and legislation and associations in geriatric palliative 

medicine in different countries of Europe. 

Method: A questionnaire was sent to the Geriatric 

and Palliative Medicine Societies of European 

countries through contact persons. The areas of 

interest were 

(1) availability of services for the management of 

geriatric patients by using vignette patients (advanced 

cancer, severe cardiac disease and severe dementia), 

(2) policies, legislation of palliative care and 

(3) associations involved in geriatric palliative 

medicine. 

Results: Out of 21 countries contacted, 19 

participated. Palliative care units and home care 

palliative consultation teams are available in most 

countries. In contrast, palliative care in longterm care 

facilities and in geriatric wards is less developed. A 

disparity was found between the available services 

and those most appropriate to take care of the 3 cases 

described in the vignettes, especially for the patients 

dying from non-malignant diseases. The survey also 

demonstrated that caregivers are not well prepared for 

caring for the elderly palliative patient at home or in 


Conclusions: One of the challenges for the years to 

come will be to develop palliative care structures 

adapted to the needs of the elderly in Europe, but also 

to improve the education of health professionals in 

this field. 



Hospice and Palliative Care in Nursing Homes 

Organisational Development and Training 

Bitschnau K. 1 , Beyer S. 1 , Pelttari-Stachl L. 1 , Pissarek A. 1 

1 Dachverband Hospiz Österreich, Wien, Austria 

Aim: Hospice Austria, the umbrella organisation of 

more than 200 Hospice and Palliative Care institutions, 

initiated a range of activities to integrate hospice and 

Palliative Care in all Austrian nursing homes. As elderly 

people are often ill and suffering from dementia when 

they move to nursing homes, expertise in palliative 

care is highly required for all carers. 

Methods and materials: Our results stem from the 

completed implementation of hospice and palliative 

care in 14 model homes and from 8 implementations 

still going on. External counselors accompany the 

organisational development process in the nursing 

homes for 18 months. A palliative representative and 

a palliative team are nominated acting as a focus 

group for palliative care in the home. We also 

developed a curriculum for palliative geriatrics. This 

curriculum uses a great variety of tools. Following the 

storyline method makes the training flexible as well as 

target oriented. 

Results: A successful implementation requires a 

combination of organisational development and 

ongoing training. Organisational development 

comprises all carers and the management. The 

training methods of the curriculum make it easy to 

meet the diverse needs of people with different 

educational backgrounds and encourage and request 

the learners’ activity. 80% of all staff - from the 

kitchen to the management - take part in it. 

Conclusion: The success and sustainability of the 

implementation of hospice and palliative care in 

nursing homes depend on the integration of all 

decision making parties (political and administrative 

level) in the roll out. A positive example is the 

advisory board bringing together such diverse groups 

like politicians, umbrella organisations in the field, 

science... At the nursing home level all staff has to be 

integrated in the process as well as the residents, their 

families/loved ones and external partners like spiritual 

caregivers and general practitioners. 



Indicators of Geriatric Palliative Care 

Kabelka L. 1 

1 Czech Society for Palliative Medicine CMA 

J.E.Purkyne, St. Joseph´s Hospice and Pain Centre 

Rajhrad, Rajhrad, Czech Republic 

Introduction: 5 years clinical experience of a 

multidisciplinary team management in a field of 

geriatric deterioration syndrome is presented with a 

suggestion in care organization, symptom 

management and communication strategies to 

patient and family. 

Methods: Hospitalization for 1 month of clinical 

observation, 1 week period monitoring of 

multidisciplinary team, supervision of the aims and 

qoals of the care in common with patient and family, 

decisions for social, long term, primary home care or 

palliative care in 1-2 months. Description of patient 

state is functional and is given with a using of 

Comprehensive geriatric assessment. The questions of 

the End-of-life care are discussed continuously - in the 

team and to the patient and family. 

Conclusion: The ageing population is a big issue of 

Czech paliative care. There are main discussed areas: 

• Syndrome of dementia (prevalence 250 000 cases) 

• care organization in nursing homes (cca - 40% 

subfunded, mised types of diagnosis = very different 

goals of care) 

• primary care (dyscontinuity with hospital care, poor 

efectivity of home care servicies, only several mobile 

hospice care teams) 

• palliative care in a social care environment 

The “diagnostic hospitalisation model” offers one of 

the solution suggestions in Czech health care system. 



Registration in Palliative Care, the Frequency 

of Sitting Service, Care Continuity, and Place 

of Death for Persons in a Swedish 

Municipality 

Wallerstedt B. 1 , Sahlberg-Blom E. 1 , Benzein E. 2,3 , 

Andershed B. 1,3 

1 Örebro University, School of Health and Medical 

Sciences, Örebro, Sweden, 2 Linneaus University, 

School of Human Sciences, Kalmar, Sweden, 3 Ersta 

Sköndal University College, Department of Palliative 

Care Research, Stockholm, Sweden 

There is a limited knowledge of the significance of an 

available palliative care and for whom such care is 

available. The aims of this study were twofold: first, to 

describe the persons in a Swedish municipality who 

were registered in palliative care, the use of sitting 

service, care continuity during the last month of life, 

and place of death; and second, to describe and 

compare the groups who received/did not receive 

sitting service. The study consecutively included 174 

inhabitants being in a palliative phase and who died 

during 2007. Data were collected retrospectively and 

analysed with various statistical methods. The 

findings showed that persons both with and without 

cancer were included in palliative care and the 

majority of them were old/very old (mean 83 years). 

Sixteen percent received sitting service. In the total 

group, 52% had no changes in the place of care during 

their last month of life, compared to those who 

received sitting service and those with cancer who 

had most changes. The most common place of death 

for all was in a nursing home, but of those who 

received sitting service, 32% died in a regular home. 

Sitting service did not affect the number of changes in 

the place of care, but significantly increased the 

possibility of dying at home. 

The result can be related to awareness in the 

municipality of the importance of implementing the 

palliative care philosophy in nursing homes and in 

home care to increase the opportunities of a dignified 

death for all. 

Keywords: Palliative care, sitting service, care 

continuity, place of death 



Palliative Care in Geriatrics: Analysis of 

Scientific Production In Brazil 

do Amaral J.B. 1,2 , de Menezes M.D.R. 1 , Vasconcelos 

C.D.S. 3 , Gianezeli A.P. 2 






The study aimed to analyze the Brazilian scientific 

production on palliative care for the elderly. 

Methodology used: research of systematic review of 

the literature in the Virtual Health Library database 

(BVS) in the period between august and october 2010. 

Keywords and its combinations of “palliative care”, 

“geriatrics,” “elderly”, gerontology” were used. 

Studies in Portuguese that were published in the last 

10 years that contemplated the selected keywords 

were selected. Data was collected with the use of a 

form containing the journal´s information; 

professional category, author´s titles and institution, 

purpose, type of work, type and research subjects, 

Brazilian region where the study was conducted. The 

process of analysis of the studies consisted of reading 

the titles, abstracts and full texts. The search resulted 

in four articles in the LILACS database. It was 

identified there is a shortage of original research 

publications that report the practice of palliative care 

for Brazilians in order to show how to deal with the 

patient and family at the final moment of life. 



Palliative Care for Persons with Dementia - 

Two Case Studies in Nursing Homes 

Heimerl K. 1 , Reitinger E. 1 , Fercher P. 1 , Erlach-Stickler G. 2 

1University Klagenfurt, IFF-Palliative Care and 

Organizational Ethics, Wien, Austria, 

2Niederösterreichische Landesakademie, Mödling, 

Austria 

Aim: The amount of persons suffering from dementia 

increases rapidly. For successful palliative care for 

people with dementia communication is of 

paramount importance. Based on the theory of 

person-centred care (Tom Kitwood) two well 

established methods of communication with persons 

with dementia (Validation® [Noami Feil] und Basale 

Stimulation® [Bienstein, Fröhlich]) were explored. The 

project aimed at answering the research question: 

What are driving and hindering factors for 

implementing the two methods of communication 

with persons with dementia in nursing homes? 

Design and methods: We chose case study research 

(Robert Yin) as research approach. Two case studies in 

two wards in nursing homes were carried out. The data 

we collected consisted primarily in qualitative data: 

non-participant observation of residents and staff, 

group discussions with staff, analysis of nursing records 

and interviews with experts were performed. Examples 

for situations in which the communication methods 

were applied in the daily routine are described as well as 

framework conditions that foster good practice in 

communication with people with dementia, such as 

flexibility in daily routine and the possibility for staff to 

participate in setting the duty plan/staff roaster. 

Results: A set of criteria of successful implementation 

for Validation and Basale Stimulation was developed. 

Based on these criteria we analysed the data and 

derived relevant aspects for successful implementation 

of methods for person-centred communication with 

persons with dementia in nursing homes. 

Conclusion: Through the case studies it can be 

demonstrated that implementation of the two 

methods of communication is not performed by 

training of staff alone. Management in nursing homes 

needs to be aware of the fact that applying Validation 

or Basale Stimulation successfully requires adequate 

organizational structures and changes the culture in 





Intervention by a Psychosocial (PS) Team 

(EAPS) into Elderly Patients (PTS) Suffering 

from Advanced Diseases. Gender Analysis 

Gomez Martin P. 1 , Carreras Barba M. 1 , Valls I Ballespi J. 1 

1 Fundacion Instituto San Jose. Hospitaller Order of St. 

John of God, Madrid. Subsidized by Fundación Obra 

Social “la Caixa”, EAPS, Madrid, Spain 

Objective: To analyze the PS intervention in pts 

>65y. Specific goals: To implement a PS program, 

both at home and the hospital setting lead by a 

clinical psychologist and a social worker (SW). 

Method: Descriptive, prospective, study. 

Analysis of the last 6 months of the PS intervention in 

adult pts, from which, we select a sample of pts aged 

65 and older. 

An initial evaluation and follow up is 

performed.Intervention is coordinated with the HCT 

within Madrid’s health area 10 and the Hosp. Pall. 

Support Team in the Getafe Hospital. 

Results: From May to October 2010, 68 pts >65y 

have been treated, representing 51% of the evaluated 

population. 24% are above 80y of age. 66% are men. 

Average age: 76y. 59% of pts had the initial 

intervention in Hospital whilst 41% at home. 

Main referral reasons: To assess and provide 

professional support: 21%; inadequate family unity: 

19%; Depression: 12%; Anxiety: 12%; Support in 

determining a suitable venue of care: PCU vs HC: 

12%, Conflict of interest: 12% 

RETIREMENT PENSION < 600€ 44% 26% 

EXTERNAL SUPPORT 89% 83% 

ONCOL. DISEASE 87% 83% 

PRESENCE RELIGIOUS BELIEFS 40% 78% 

MAIN CARER 93% 87% 

LACK OF FAMILY ORGANIZATION 16% 20% 

DEPRESSIVE SYMPTOMS 28% 19% 

ANXIETY 12% 10% 

NEED FOR SUPPORT TO CARER 20% 27% 

DECISION TAKING FOR VENUE OF CARE 16% 12% 

[GENDER ANALYSIS] 

Conclusions: The combined intervention of a 

psychologist and sw, in coordination with the PCT, 

holistically favors and forms an integral part of the 

treatment process for both the pt and family.Care of 

persons >65y represents 51% of the assignment of 

work essential for the specific development of 

protocols of intervention. 24% of the pts are older 

than 80y, with a parallel increase in the age of main 

carers, frailty and the need for support.We found 

some differences by gender. 



Treatment of Pain and other Decisions at the 

End of Life: Comparing Patients with 

Dementia and Cancer 

Bailey S.K. 1 , Chambaere K. 2 , Cohen J. 2 , Deliens L. 2,3 

1 Lakehead University, Psychology, Thunder Bay, ON, 

Canada, 2 Vrije Universiteit Brussel, End of Life Care 

Research Group, Brussels, Belgium, 3 VU University 

Medical Center Amsterdam, Amsterdam, Netherlands 

Aims: Physicians’ end-of-life decisions (ELD) in 

patients with dementia have not been extensively 

studied; however dementia can complicate 

communication and is a known risk factor for 

underdiagnosis and undertreatment of pain. We 

examined end-of-life decision-making in patients 

with any diagnosis of dementia and compared it with 

that in cancer patients. 

Methods: Physicians who certified a representative 

sample of 8627 death certificates in Brussels and 

Flanders, Belgium completed written questionnaires 

about ELDs (50 % response rate). Patients with any 

diagnosis of dementia (N=361) and with cancer and 

no dementia (N=1272) were retained for analyses, and 

younger (18-79 years) and older patients (80+) were 

compared. 

Results: Lethal drugs were less often used in patients 

with dementia than those with cancer (3.9% vs. 

7.1%), but were never preceded by an explicit request 

in dementia patients. When continuous deep 

sedation (CDS) was initiated it was significantly more 

often without the patient’s consent or request in 

patients who died with dementia than cancer, 

(younger: 73.3% vs. 29.1%; older: 53.2% vs. 23.6%). 

Intensified alleviation of pain and symptoms (APS) 

occurred less often in dementia patients than in 

patients with cancer. Physicians more often reported 

patients’ low quality of life (QoL) as reasons for the 

ELD in dementia patients; and pain more often as a 

factor in cancer patients. Despite this, reported pain 

levels in the last 24 hours did not differ significantly 

and dementia patients were significantly less likely to 

be in receipt of opiates (younger: 49.3% vs. 83.6%; 

older: 50.2% vs. 74.3%) or benzodiazepines (younger: 

17.8% vs. 43.8%; older: 19.4% vs. 30.0%) during the 

final 24 hours of life. 

Conclusion: This study indicates specific end-of-life 

decision making patterns in patients with dementia. 

Dementia represents a rapidly growing and complex 

clinical group whose end of life treatment warrants 

continued empirical attention. 



Clinical Data, Evolution and Outcome of 48 

PEG Feeding Stroke Patients 

Silva J.A. 1 , Santos C. 2 , Fonseca J. 2 

1 Hospital Garcia de Orta, Medicina 1, Almada, 

Portugal, 2 Hospital Garcia de Orta, GENE - Grupo de 

Estudo de Nutrição Entérica, Almada, Portugal 

Rationale: Long standing dysphagia is frequent after 

a stroke. It is commonly associated with malnutrition 

and aspiration. PEG placement is the choice for long 

term enteral feeding and might reduce complications 

associated with dysphagia, improving quality of life 

and survival rates. 

The aims of this retrospective study were the 

evaluation of: 

1. Clinical data, evolution and outcome of PEG 

feeding stroke patients. 

2. Location of vascular lesion and nature of the stroke: 

thrombotic, hemorrhagic or embolic. 

3. An eventual relationship of location or nature of 

the stroke with clinical outcome. 

Methods: From the clinical files of 312 PEG patients 

(1999-2009), we selected those with stroke. 

Results: In 48 patients (15.4%) PEG placement was 

due to stroke. Twenty-seven were male (56.2%). There 

were no procedure-related deaths and no major 

complications of enteral PEG feeding. 

Eleven (22.9%) were lost for follow-up, 23 (47.9%) 

died, 4 (8.3%) patients resumed oral feeding and PEG 

was removed, 12 (25%) are still PEG feed and followed 

by the enteral nutrition team. The survival ranged 

from less than one month in 7 patients (14.6%) up to 

67 months. 

Only 24 (50%) patients had documented CT or NMR: 

5 (10.4%) had no visualized vascular lesion (presumed 

thrombotic), 5 (10.4%) had hemorrhagic stroke, 4 

(8.3%) had thrombotic stroke with hemorrhagic 

transformation, 3 (6.3%) had embolic stroke. The 

most common location was the middle cerebral artery 

13 (27%) and 7 (14.5%) were at the posterior cerebral 

artery. 

We found no relationship of the clinical outcome 

with location or nature of the stroke. 

Conclusion: PEG placing and long term enteral 

feeding of stroke patients was safe, with no mortality 

or major mobility. Although some patients died early 

during the stroke episode, long term PEG feeding was 

effective allowing enteral nutrition during many 

years. Neither the location nor the nature of the stroke 

seemed to be related with the clinical outcome. 



‘Doc, how Long Do I Have if We Do Nothing’ - 

Prognosis of Supportive Care Only in Elderly 

Cancer Patients Presenting with st iv Metastic 

Disease 

De Koninck J. 1 , Geurs F.J. 1 , Masfrancx D. 1 , De Vos V. 1 , 

Horlait M. 1 , Schollaert G. 1 


Halle, Belgium 

Aim: Patients < 75 years are usually subjected to a 

trial of antitumoral therapy (chemo, radiotherapy) 

because systemic treatment offers a survival benefit. 

The survival of elderly cancer patients, unfit or 

unwilling to accept treatment, is unclear. 

Patients and methods: We conducted a 

retrospective analysis among patients over 75 years of 

age, with st iv cancer at admission for whom no 

treatment was considered. All admissions from jan 

2008 to oct 2010 at the geriatric oncology dept were 

screened for therapeutic decisions . 

40 patients were unfit for further treatment and 

received supportive care only, all were transferred to 

the palliative care dept, date of admission and death 



were noted. 

Ratio: male/female: 29/11; age range 84 (range 76-93). 

All tumor types were represented (nsclc, pancreas, 

hormone resistant prostate cancer, colon) Breast 

cancer patient were not included, as all received a trial 

of hormonal therapy. 

Results: Median survival from diagnosis to death was 

25 days,( range 5-90). 

Conclusion: 

1. Elderly patients presenting with st iv cancer have a 

dismal prognosis, median < 30 days. This information 

is important as family members frequently ask for 

prognostic details. 

2. Usually little symptom control is needed, provided 

artificial means of life prolongation, are omitted 

3. Further observations of this frequently neglected 

cancer population is needed. 



The under Estimate Role of Pharmacists in 

Palliative Care: The Case of Panama, 

Venezuela and Mexico 

Holguin-Licón M. 1 , Buitrago R. 2 , Bonilla P. 3 

1 Cepamex, Mexico, Mexico, 2 Universidad de Panamá, 

Farmacia Clínica, Panamá, Panama, 3 Hospital 

Nacional de Cáncer, Caracas, Venezuela 

The role of pharmacists in palliative care provision is 

limited in most of Latin American Countries. 

Nevertheless, the American Hospital Pharmaceutical 

Association has stated the role of pharmacists in 

hospices and palliative care settings. 

According to this statement, the key role of 

pharmacists in palliative care implies not only the 

provision and preparation of opioid formulas 

prescribed by doctors, but also they advice and 

monitoring on the use of medicines, as well as to 

counsel patients to understand their medication 

regimens and changes of them due to diverse 

symptoms. 

The objective of this study was to determine the role 

that pharmacists play in palliative care in those 

countries, and the importance of education to 

empower them as key health care providers. A 

questionnaire was applied to find out the real role that 

they were playing. 

Preliminary results indicate that there is a need to 

increase training among pharmacists in palliative care 

not only in clinical tasks but also on issues related to 

public policies to establish a proper role that those 

professionals should have in those countries. 



ATOME Update of WHO National Controlled 

Substances Policies: Significant Challenges 

that Possess Implications for the Delivery of 


Lynch T. 1 , Junger S. 2 , Radbruch L. 3 , Scholten W. 4 , 

Greenwood A. 1 , Payne S. 1 


End of Life Care, Lancaster, United Kingdom, 2 Aachen 

University, Department of Palliative Medicine, 

Aachen, Germany, 3 Malteser Hospital Bonn/ Rhein- 

Sieg, Centre for Palliative Medicine, Bonn, Germany, 

4 World Health Organization, Access to Controlled 

Medicines, Geneva, Switzerland 

Background: ATOME (Access to Opioid Medication 

in Europe) is an EU-funded project for the 

improvement of access to opioids for medical and 

scientific use in 12 European countries. An update of 

the WHO Guidelines on Achieving Balance in 

National Controlled Substances Policies is 

fundamental to the project. 

Aim: To identify significant challenges in national 

controlled substances policies that possess 

implications for the delivery of palliative care. 

Study design and methods: A panel of 30 experts 

from palliative care, public health and harm 

reduction was invited to a four-stage revision process. 

Firstly, a qualitative inventory of required changes 

was made by means of a structured checklist. Based on 

the experts’ feedback, a draft revision of the 

Guidelines was prepared and submitted to a tworound 

online consensus Delphi process. Data from 

the inventory of required changes/Delphi process 

were analysed by two independent researchers. 

Results: A number of significant challenges were 

identified: 

(i) Inappropriate, unclear, or confusing medical 

terminology; 

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(ii) Educational/training barriers that circumscribe the 

ability of both doctors and nurses to prescribe the 

necessary doses of opioids to patients; 

(iii) Fear amongst healthcare professionals and 

members of the community in relation to the 

stigmatizing and taboo status of ‘drug 

addiction/dependence’; 

(iv) A ‘Western’ focus that fails to adequately 

represent the socio-cultural context of developing 

countries; 

(v) Disproportionate socio-economic circumstances 

of individuals and countries; 

(vi) Excessively restrictive/unduly burdensome opioid 

legislation and practices. 

Conclusion: There are a number of significant 

challenges in national controlled substances policies 

that possess implications for the delivery of palliative 

care. The relevance of such policies to a plethora of 

diverse socio-cultural, economic, educational and 

health policy contexts should be fully and adequately 

considered. 



Developing a Methodology for the Calculation 

of the Demand of Hospice Beds 

Jaspers B. 1,2 , Becker M. 1 , Nauck F. 1 

1 University of Goettingen, Department of Palliative 

Medicine, Goettingen, Germany, 2 University Clinic of 

Bonn, Centre for Palliative Medicine, Malteser 

Hospital Bonn/Rhein-Sieg, Bonn, Germany 

Aim: The aim of this study was to develop a 

methodology for the calculation of the demand in a 

certain area in the form of an algorithm that can be 

used for periodic re-evaluation and assessment. 

Methods: From 04-10/2010 the following methods 

were used: strategic literature searches (including grey 

literature), expert interviews, round tables with 

representatives of the umbrella organisations, politics, 

health insurers, and with heads of all hospices in the 

region. Analysis of the available demographic and 

epidemiological data (current and prospective). 

Evaluation of a survey of the hospices in the region, 

including epidemiology and demography of patients, 

number of patients, length of stay, hospice utilisation 

etc. Further, a questionnaire seeking to gather 

information of the network of each hospice in the 

region, barriers to referral and availability, and other 

aspects was worked out by a multi-professional focus 

group, sent out after a pre-test, and evaluated. 

Results: Data from the survey of the hospices (n=59; 

response rate 78%) and network questionnaire 

(response rate 44%) enabled to compare absolute 

demographic and epidemiological data from the 

region including mortality and causes of death with 

the patients represented in hospices. Barriers to the 

availability of hospice beds were identified and 

networks assessed. Many data from official statistics 

offices needed to be reorganised and/or were only 

available on demand. An algorithm was developed 

and will be presented, including factors based on hard 

facts and identified factors that may influence the 

demand. Some will need accompanying research. 

Conclusions: An algorithm for the calculation of the 

demand of hospice beds comprises of a great number 

of items that need to be assessed for the respective 

region. Nevertheless, some aspects will be dependent 

on political decision-making, health insurance 

companies, self-conception and economic situation 

of the hospices. Respective recommendations are 

given. 



Legal Analysis of Impediments to Access to 

Opioid Analgesics for Palliative Care Patients 

in Kazakhstan 

Shakenova A. 1 , Aidarkulova A. 1 

1 Soros Foundation-Kazakhstan, Law Reform Program, 

Almaty, Kazakhstan 

The legal analysis aimed at learning about how state 

regulations on drug control policy can influence the 

availability of opioids for medical purposes, and at 

elaborating recommendations on legal regulatory 

changes to address the existing barriers. 

The Analysis focuses on the three main issues. The 

first shows us co-relation between international drug 

treaties and national laws regarding access to the 

opioids. In spite of the fact that palliative care was 

included into the Medical Code in 2009, the 

Government still concentrates on drug control 

obligations ignoring the principles of opioids 

availability for medical and scientific purposes. 

Kazakhstan is among those countries which have a 

low consumption of opioids and opioids estimated 

requirements stays the same every year. 

The second part describes the complicated multi-stage 

process of the pharmaceuticals registration and 

distribution systems. The lack of consistency in the 

major drugs lists leads to a very limited opiods’ 

availability for patients in hospitals and palliative care 

units, and even less availability for those who are in 

the outpatient settings. 

The last part of the Analysis demonstrates that one of 

the main factors impeding adequate chronic pain 

treatment within the palliative care system in the 

country is a very strictly controlled system of narcotic 

analgesics provision. Consequently, the physicians, 

when confronted with the problem of prescribing 

narcotic analgesics, have a lot of obligations to 

comply with various regulations being controlled by 

different institutions. The fear of sanctions for 

unintended violations, including those of technical 

nature, leads to a significant decrease in prescribed or 

distributed opioids. 

In conclusion, there is a set of recommendations 

which can be used by different stakeholders on their 

further work on the Access to opioid analgesics for 

palliative care patients in Kazakhstan. 



National Policy Review in 10 African 

Countries 

Mienies K.A. 1 , Baguma A. 2 , Mwangi-Powell F. 3 

1 African Palliative Care Association, Programs, 

Centurion, South Africa, 2 African Palliative Care 

Association, Grants Management, Kampala, Uganda, 


Background: The African Palliative Care 

Association (APCA), through a grant funded by the 

International Palliative Care Initiative and Open 

Society Institute South Africa, conducted a 1-year 

project that reviewed national legislation, policy 

documentation and implementation guidelines 

across 10 southern African countries. The review 

assessed opportunities, gaps, and gender issues that 

can be addressed or strengthened to support palliative 

care at the national level. 

Method: 

Document review tool was developed based on 

evidence from rapid appraisals in Zambia and 

Zimbabwe and information from Uganda, Kenya and 

South Africa. 

Key policy documents, guidelines and frameworks 

from the project countries were reviewed 

A country report was developed highlighting the 

findings and recommendations. 

A roundtable meeting was held in each country with 

key stakeholders to discuss the findings, 

recommendations and to brainstorm ideas for a 

country advocacy agenda 

Discussion: It is evident that one of the key 

challenges to effective palliative care development 

across Africa is the lack of its integration into existing 

national health policies and strategies, thereby 

denying access to the majority of those who require 

palliative care. Reviewing national legislation and 

policy documents in each country allowed APCA to 

hold key discussions and sensitise policy makers on 

palliative care and gender issues that need to be 

addressed and strengthened. 

Lessons learned: There is still a lack of knowledge 

around palliative care which needs to be addressed at 

a national level but there is a willingness and 

acceptance for further integration and 

recommendations to be given to enhance access to 


Recommendation: This was a key project to 

highlight gaps and opportunities for palliative care at 

a national level. This needs to be replicated through 

other countries to ensure access to care for those who 

need it. 



Mapping Research Activity in Latin America 

Pastrana T. 1,2,3 , De Lima L. 3 , Eisenchlas J.H. 4 , Wenk R. 3,5 

1 Lancaster University, Lancaster, United Kingdom, 

2 RWTH Aachen University, Aachen, Germany, 

3 IAHPC, Houston, TX, United States, 4 Asociacion 

Latinoamericana de Cuidados Paliativos - Continuum 

Home Care BA, Buenos Aires, Argentina, 5 Programa 

Argentino de Medicina Paliativa-Fundación FEMEBA, 

Buenos Aires, Argentina 

Research in palliative and hospice care is essential for 

the development of appropriate treatment protocols. 

However, data indicates that the vast majority of 

palliative care research is carried in developed regions. 

Important aspects of the palliative care needs of 

patients from Latin America are largely unexplored. 

This study aims to explore the palliative care research 

activity in Latin America and its visibility in the 

international palliative care literature, with a special 

focus on research studies. 

A bibliometric analysis was conducted in Medline®, 

EMBASE® and CINAHL® in July 2010. Inclusion 

criteria were when either the first author and/or the 

data collection were derived from Latin America, and 

the main issue deals with Palliative Care. Excluded 

were editorials and articles published in no scientific 

journals. All languages were included. 

The literature research identified 504 references. 86 

articles published by authors in 10 countries were 

included; the first publication was a qualitative study 

in Brazil in 1989. Most of scientific output has been 

the last 5 years. Also, the number of publications 

within the region is distributed unequally, reflecting 

the heterogeneity of the region: Brazil published more 

than half of the articles, while 30 countries have no 

publications. Mostly of the studies used quantitative 

designs, mainly cross-sectional studies. Qualitative 

studies often used interviews. Perceptions, feelings, 

attitudes, meanings about death were the most 

researched issue. 

Overall the study shows a very limited contribution of 

publications from Latin America. Reasons for the 

underrepresentation, as well as possible correction of 

this imbalance are discussed. Efforts should be made 

to increase, improve and sustain research in palliative 

care in Latin America. The development of a regional 

research agenda tailored to the needs and features of 

the region considering the health care structure and 

local resources available is essential. 



Benefits of International Volunteering in 


Leng M.E.F. 1 

1Makerere University, Palliative Care Unit, Kampala, 

Uganda 

Aims: With social entrepreneurship & awareness of 

inequalities in health care there is increasing interest 

in international volunteering. Many initiatives exist 

from formal twinning of services, international 

organisations & networks & individual links. The UK 

the government’s encourages international sharing of 

good practice and taking training to resource 

constrained settings yet managers ask the benefits of 

international links. A survey was carried out to 

explore the personal, professional & institutional 

benefits of international palliative care visits from UK 

health professional as part of advocacy to the crossparliamentary 

group on palliative care & 

development at the Scottish parliament in 2009. 

Methods: An online survey questionnaire was 

developed & circulated via personal contacts, national 

networks and international organisations. Data 

collected using a 5 point Lickert scale encompassing 

areas gleaned from personal experience & discussion 

with key experienced individuals; personal such as 

gaining a fresh perspective, cross cultural 

understanding, developing self awareness & 

humanitarian contribution, professional such as skills 

development, team working, problem solving, 

cultural sensitivity & institutional such as 

development of networks awareness of global issues 

and culturally competent services. 

Results: 43 surveys completed. Participants; doctors 

68% and nurses 24%. 68% spent 2 weeks or less with 

12% more than 1 year. Benefits according to area; 

1. Personal; 8 out of 10 scored more than 4 (good or 

excellent) 

2. Professional; 17 out of 19 scored > 4 

3. Institutional; 7 out of 12 scored > 4 though showed 

less engagement. 

Challenges included language and cross cultural 

issues. 

Conclusions: International visits can offer 

significant human resource development as well as 

the more obvious humanitarian contribution thus 

offering mutual benefit and learning. Health services 

should be encouraged to consider such links. 




Identifying Patient Preferences for Cancer 

Care in the Context of Resource Constraint: 

Choosing Health Plans all Together (CHAT) 

Abernethy A.P. 1 , Danis M. 2 , Zafar Y. 3 , Pooley P. 4 , Hudson 

L. 3 , Reed S.D. 5 , Fowler R. 3 , Taylor D. 4 

1 Duke University Medical Center, 

Medicine/Oncology, Durham, NC, United States, 

2 National Institutes of Health, Clinical Center 

Bioethics Consultation Service, Bethesda, MD, United 

States, 3 Duke University Medical Center, Medical 

Oncology, Durham, NC, United States, 4 Duke 

University, Sanford Institute of Public Policy, 

Durham, NC, United States, 5 Duke Clinical Research 

Institute, Center for Clinical and Genetic Economics, 

Durham, NC, United States 

Background: Healthcare reform in the United States 

(US) and local cost containment efforts have fueled 

discussion of how to improve financing policy for 

care at the end of life. A rational, patient-defined, 

evidence-based recommendation to inform redesign 

of the US Medicare program (national healthcare 

funding for US citizens age ≥65) is needed. Currently, 

Medicare funds hospice services for people with 

prognosis < 6 months who agree to forego curative 

treatment. 

Aims: The project goal is to allow patients and 

families living with cancer to help redefine Medicare 

reimbursement policy for advanced cancer 

management. Specific aims are to: 

(1) collect and analyze data on cancer patient and 

family member preferences for care near end of life, 

(2) use these preferences to propose changes in 

financing policy, and 

(3) estimate the cost impact of implementing these 

changes. 

Design, methods: Cancer patients and their 

caregivers (N=600 total) participate in a structured 

group decision-making exercise to construct health 

plans based on their preferences under budgetary 

constraints. Using a CHAT decision-making tool, 

participants select basic, intermediate, high, or 

advanced options from 15 benefit categories. A 

manual describes features of each benefit category. 

Health event cards, describing illness scenarios and 

consequences of coverage choices, are introduced 

twice; 4 decision cycles include group discussion and 

deliberation about participants’ values and reasons for 

choices, and allow comparison of individual and 

group choices. Data analysis will document patient 

and family preferences for care near the end of life, 

examine differences by race or between patients and 

caregivers, and determine if preferences change after 

CHAT participation. Analyses will help inform 

Medicare benefit redesign. 

Results: 70-100 CHAT sessions will be conducted; 

240 participants are expected by 12 months. 

Preliminary analysis of 8-month results will be 

presented. 

Conclusion: Forthcoming. 



Polling Albertans About Hastened Death 

Wilson D.M. 1 , Cohen J. 2 , Mohankumar D. 1 

1 University of Alberta, Nursing, Edmonton, AB, 

Canada, 2 Vrije Universiteit Brussel, End-of-Life Care 

Research Group, Brussels, Belgium 

Research aims: In Canada, assisted suicide and 

euthanasia are prohibited by the Criminal Code. A 

2010 telephone survey of a representative sample of 

adult Albertans was undertaken to determine the 

public’s views on hastened death. Few surveys in 

Canada have been undertaken; this study adds to a 

limited knowledge base. 

Study design and methods: The University of 

Alberta’s Population Research Laboratory added 7 

questions in their annual cross-Alberta telephone 

survey. In May-July, 1,203 Albertans were surveyed. 

This survey is carefully conducted to ensure correct 

population proportions are included for results highly 

(95%) representative of adults aged 18+. Data for the 7 

questions and socio-demographic questions were 

obtained and descriptive comparative tests 

undertaken for initial findings in relation to hastened 

death. 

Results: 77.3% of all responders (6.2% did not 

answer) said yes to the question: Should dying adults 

be able to get help from others to end their life early? 

Of these: 36.8% said yes, every competent adult 

should have this right; 40.6% said yes, but it should be 

allowed only in certain cases or situations, and 22.7% 

said no. Further tests revealed Albertans did not differ 

by: where they lived, past experience in caring for a 

dying person, having had a close friend/family 

member pass away, gender, marital status, ethnicity, 

income, and voting preferences. Some groups were 

not as supportive (but over 50% were in support): 

adults who had not graduated from high school, 

religious people, older adults, and people without a 

living will. 

Conclusion: Albertans are surprisingly open to 

hastened death, with further study and dialogue 

needed now to shape heath care or public policy. 

Funded in part by a grant #HOA-80057: Timely Access 

and Seamless Transitions in Rural Palliative/End-of- 

Life Care, through the CIHR Institute of Cancer 

Research and Institute of Health Services and Policy 

Research to Allison Williams and Donna Wilson (Co- 

Principal Investigators). 



DNACPR - Resuscitating Best Practice: 

Applying Policy to Practice in a Hospice 


Kemp R. 1 , Hill V. 1 , Donaldson K. 1 , Adam J. 1 , McKay J. 1 , 

Howie E. 1 , Wilson L. 1 , Brown H. 1 , Brown D. 1 

1 St Columba’s Hospice, Edinburgh, United Kingdom 

´Do Not Attempt Resuscitation’ (DNAR) has been a 

hot topic for some time. A variety of DNAR policies 

already exist and a national NHS Scotland ´Do Not 

Attempt Cardiopulmonary Resuscitation´ (DNACPR) 

policy is currently being implemented across 

Scotland. 

After adapting the regional Lothian DNAR policy for 

local use in 2006, it became clear that uncertainty 

around DNAR still existed amongst our hospice staff. 

The hospice Clinical Governance Research and Audit 

Committee recommended a policy review and 

exploration of staff knowledge and experience. 

Through an audit questionnaire, we captured the 

views and knowledge of the multi-professional team 

(n=79) with regard to the existing policy. The 

questionnaires yielded an 88% response rate. Three 

key themes emerged: understanding, uncertainty and 

education. The results of the audit, in conjunction 

with the launch of the national DNACPR policy, 

provided an ideal opportunity for the development of 

an educational programme. 

This poster outlines the processes involved in the 

practice development initiative undertaken to ensure 

that staff working in this Specialist Palliative Care 

Unit have the knowledge and skills required to 

communicate sensitively with patients and families 

and to support other professional colleagues in this 

challenging area. 



Incorporation of Legal and Human Right 

Issues in Palliative Care 

Musyoki D.K. 1 , Ali Z.M. 2 

1 Kenya Hospices and Palliative Care Association, 

Programs, Nairobi, Kenya, 2 Kenya Hospices and 

Palliative Care Association, National Coordinator, 

Nairobi, Kenya 

Aims: Palliative care aims to improve the quality of 

life for patients facing life-threatening diseases by 

relieving pain and suffering through provision of 

physical, psychosocial and spiritual care. About 29- 

74% of people who receive. 

ARVS experience pain. Access to pain relief is 

fundamental to human dignity and the rights to 

health and freedom from cruel, inhuman, and 

degrading treatment. In Kenya, despite the UN 

Convention on Narcotic Drugs, there is no effective 

policy for supply and distribution of pain medication 

and excessively strict regulations impede access. 

There are also no measures to ensure training for 

healthcare workers on pain management and 


Additionally, people living with life-threatening 

diseases, face complicated legal issues related to 

testacy and stigmatization. Addressing these issues is 

part of palliative care´s holistic approach. 

Design: KEHPCA carried out an assessment of 

human rights issues affecting palliative care patients 

in three member hospices, which confirmed gaps in 

access to pain medication and unaddressed legal 

challenges. KEHPCA submitted a proposition paper as 

part of the Kenya constitutional review process, 



connecting the provision of palliative care to the right 

to health and calling for a policy that incorporates 

palliative care into the public health system. KEHPCA 

is also working with legal advocates to create a manual 

and training program to help palliative care providers 

identify patients´ legal issues and resources to address 

them. Patients and families are simultaneously being 

educated about their rights during day care sessions at 

hospices and palliative care centers. 

Results: There is a great need for advocacy to 

empower patients and families on their rights and a 

need to also educate health care providers on 

patient´s rights. 

Conclusion: KEHPCA plans strategic continued 

advocacy on patient rights to pain medication, 

inheritance, the law of succession and wills. 



Costs of Terminal Patients who Receive 

Palliative or Usual Care in Different Hospital 

Wards 

Menten J.J. 1 , Kutten B. 2 , Keirse E. 3 , Vanden Berghe P. 3 , 

Beguin C. 4 , Desmedt M. 4 , Deveugele M. 5 , Léonard C. 6 , 

Paulus D. 6 , Simoens S. 7 , Interuniversity Research Group 

Palliative Care for the Belgian Healthcare Knowledge Center 

1 University Hospital Gasthuisberg, Radiotherapy- 

Oncology & Palliative Care, Leuven, Belgium, 

2 University Hospital Gasthuisberg, Management, 

Leuven, Belgium, 3 Federation of Palliative Care 

Flanders, Wemmel-Brussels, Belgium, 4 Catholic 

University of Louvain, Brussels, Belgium, 5 University 

of Ghent, Ghent, Belgium, 6 Belgian Healthcare 

Knowledge Center, Brussels, Belgium, 7 Catholic 

University Leuven, Leuven, Belgium 

Introduction: A multi-centre, retrospective cohort 

study compared costs of palliative or usual care (PC - 

UC) in acute wards or in palliative care units (PCU). 

Health care costs included fixed hospital costs, 

charges relating to medical fees, pharmacy and other 

charges. 

Material and methods: A retrospective, multicentre 

cohort study compared the costs in the last 30 

days of terminal patients who receive PC or UC in 

acute wards or in PCU in Belgian hospitals. The study 

enrolled hospital patients deceased in 6 monyhs after 

from 1-2007 in oncology, geriatric and cardiology 

wards and PCU. Patients with acute illness, sudden 

death and death following therapeutic complications 

were excluded. A physician (JM) and a nurse (BK) 

assessed whether the patient received PC or UC by 

examining the decision making process and based on 

their actual care in the last 30 days. The study enrolled 

a Dutch- and in French-speaking university hospital, a 

public and a catholic hospital and quantified real 

costs based on actual resource use. 

Results: Six hospitals generated a total of 146 

patients: 17 in cardiology, 42 in geriatric , 35 in 

oncology ward and 52 patients in the PCU : 89 

patients received PC and 57 patients received UC. The 

mean costs per day and per patient is: 

A = pal care in acute wards (n = 37): 283 ± 109€ 

B= usual care in acute wards (n = 57): 340 ± 143€ 

C= PCU (n = 52): 522 ± 98€ 

A to B: p =0,024 and A toC: p < 0,001 

Conclusion: The study shows that PC in a PCU was 

more expensive than PC in acute wards as a result of 

higher staffing. PC in an acute ward generated lower 

costs than UC. This underlines that timely transition 

from UC to PC in terminal patients in acute wards is 

costs saving while the quality of care is propbably 

more adapted to the needs and wishes of the patients 

and their family. These findings give an idea of the 

order of magnitude of costs, but do not represent 

exact cost data. 



The Development of the Concept of the 

Palliative Medical Care Introduction in 

Republic of Armenia 

Babayan R.- 1 , Krmoyan S. 2 , Nanushyan L. 3 , Papikyan A. 4 

1 Ministry of Health of Republic of Armenia, Legal 

Department, Yerevan, Armenia, 2 Ministry of Health of 

Republic of Armenia, Legal Advisor of Minister, 

Yerevan, Armenia, 3 Standing Committee on Health 

Issues of the National Assembly of RA, Yerevan, 

Armenia, 4 Open Society Foundation Armenia, 

Yerevan, Armenia 

Research aims: Palliative care, being the most 

important component of the current developed 

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health care system, is a new phenomenon for 

Armenia. Up to now, the common policy guidelines 

for the formation of palliative care, as a component of 

the current health care system, were not developed 

and implemented as the latter requires a complex 

strategy. Since there is a large number of oncological 

patients in the Republic who need palliative care, 

there was an urgent need for the development of a 

concept on implementation of palliative care with the 

aim to mitigate the physical and mental sufferings, to 

complete life with dignity. 

Study design and methods: To achieve the 

objective of the research, the current legislation and 

health system regulatory programs, international 

experience in this field, in particular the European 

standards as well as reforms in palliative care 

introduction in many countries have been reviewed 

and analyzed. 

Results: The palliative care concept which has been 

developed on the basis of the results of study on 

introduction of the palliative care services, includes 

the following actions: amendments of legislation and 

development of the legal framework, assesments of 

needs on health care services, on drug availability 

field, public awareness campaign. 

Conclusion: The progress of the current society 

requires strengthening of humanitarian and 

democracy ideas, recognition of the human’s life 

oneness and protection of human rights, including 

patient rights, when the main values are human 

dignity, equality, solidarity, which is enshrined in 

fundamental international documents, such as the 

Universal Declaration of Human Rights, the European 

Social Charter, etc., as well as in Constitution of the 

Republic of Armenia. Therefore the implementation 

of the palliative care services in accordance with the 

mentioned principles and values, is the most 

important issue for the Armenia, that allows to 

improve the quality of life of patients and their 

relatives. 

bstract number: P1003 


When Law Hurts: Legal and Policy Issues that 

Hinder Palliative Care Development in Africa 

- APCA’s Response 

Ddungu H. 1 , Mwangi-Powell F. 1 


Background: The enjoyment of the highest 

attainable standard of health is one of the 

fundamental rights of every human being. The 

legislative setting in any given society affects and/or 

influences this right. 

Chronic pain can have a devastating impact on an 

individual´s quality of life, as well as an impact to the 

care providers. Palliative care ensures relief from pain 

and other distressing symptoms, both physical and 

non-physical, as well as offering supportive systems to 

help the family cope during patient’s illness and 

bereavement. 

Methods: There are legal and policy issues that 

hinder palliative care development in Africa and 

successful practicing of palliative care requires basic 

knowledge of these medico-legal aspects. As a 

response, APCA carried out a study to identify the 

legal needs for patients and care providers in Uganda 

as well as a desktop review of legal documents, laws 

and regulations that impede and/or have the 

potential to influence effective palliative care 

provision in Kenya and Tanzania. 

Findings: We found that there are significant legal 

needs among patients with life-threatening illnesses, 

and their care providers in Uganda. Many patients, 

especially the less educated do not make wills due to 

lack of awareness and/or lack of technical knowledge 

of how to do so. 

In Kenya and Tanzania, we found that there are 

excessive legislative restrictions on the use of opioids. 

The social security sector is too weak to guarantee 

security to the terminally ill who are not sufficiently 

catered for under the available schemes. 

Conclusion: There are legislative challenges that 

hinder palliative care development as well as 

opportunities upon which it can be promoted. There 

is therefore need for policy framework and social 

security reforms with resources allocation to ensure 

access. 



The Role of Physiotherapy to Prevent Falls in 


Molinaro M. 1 , Interdisciplinary Team of National Cancer 

Institute of Brazil 

1 National Cancer Institute of Brazil, Palliative Care, 


Fall is associated with considerable mortality and 

morbidity, reducing quality of life, especially in 

elderly and cancer patients, and it should be a 

component of Health Policy. Risk factors for fall and 

prevention strategies applied to cancer patients in 

palliative care are yet unclear. Fall prevention is 

priority, and the physiotherapist must inform the 

risks to patients and caregivers and indicate exercises, 

walk aid and suggest other approaches when 

necessary. The aim of this study is to identify the fall 

risks factors and the role of Physiotherapy to prevent 

falls in Palliative Care. 

Methods: This study is a literature review searching 

the following databases: Pubmed and Lilacs, 

published in the last 10 years. The keywords used 

were: palliative care and falls. The languages selected 

were: Portuguese, English, Italian, Spanish and 

French. The criteria of inclusion were: original articles, 

interventional study, and reviews that were related to 

risk of falls in palliative care. 

Results: This strategy obtained 49 abstracts which 

were read, and only 4 obeyed the criterias of selection. 

All articles were in English language. 2 articles were a 

prospective design, and 2 articles were a review. The 

factors of risk found were: delirium, age and the use of 

neuroleptics. 2 articles showed the importance of 

exercises. Physiotherapy interventions consist of a 

several treatment modalities to decrease pain, correct 

postural change, improve mobility, enable the patient 

to follow a normal social life and prevent fracture. 

Conclusion: The major risks factors of fall identified 

in the articles were: delirium, age and the use of 

neuroleptics. The role of Physiotherapy is help the 

interdisciplinary team to identify the risks and 

prevent falls with an efficient program. After this 

review, the Physiotherapy team established a program 

strategy to prevent falls, and a screening for inpatients 

and outpatients for falls risk is now a contentious 

component. 



The Right Time for Integration of Palliative 

Care in Montenegro’s Health Care System 

Lakicevic J. 1 , Radunovic M. 1 , Radunovic M. 2 

1 Ministry of Health of Montenegro, Podgorica, 

Montenegro, 2 Clinical Center of Montenegro, Clinic 

of Ophthalmology, Podgorica, Montenegro 

Background: The health care system in Montenegro 

is organized as a public health care system. Few years 

ago, health system reform started with goals to 

improve the quality and efficiency, where also the 

position of palliative care (PC) has been addressed. 

Design: PC incorporation in our health system is 

mainly caused by aging of the population and high 

percent of morbidity and mortality due to chronic 

noncommunicable diseases. Integration of PC is in 

line with projected goals of the reform of health 

sector, which is finished in primary health care (PHC). 

It assumes the system of chosen doctors and 

supportive centers, among which are patronage 

services suitable for delivered home based palliative 

care. Hospital sector reform still is in process and 

secures capacities for PC as a result of hospital sector 

re-engineering. PC services are provided, however not 

in desired structured, comprehensive and organized 

manner. At the moment our PC is mainly focused on 

physical domain. Other aspects of support for patients 

and families are not provided. Needs assessments are 

required due to missing of accurate and reliable data. 

We are facing many dilemmas and challenges. What 

is our road map? Which model of PC to opt for 

successfully integration in health system? How to 

access to available international expertise and 

experience suitable for education and training of our 

professionals? Among recognized challenges are also 

human and financial resources, and as well intersectored 

cooperation within and out of health care 

system. Awareness regarding PC, it’s mission and 

achievements is still low. The patient’s right to have 

the best quality of life must be recognized. 

Conclusion: Integration of PC in our health care 

system could be achieved through adjacent doings 

within each domain, with devotion and commitment, 

involving government, providers, nongovernmental 

organization and our society as a whole, bearing in 

mind “we cannot always cure, but we can always care”. 



Human Rights from a Gender Perspective - A 

Rapid Assessment of Palliative Care Service 

Delivery in Zambia and Zimbabwe 

Mienies K.A. 1 , Baguma A. 2 , Mwangi-Powell F. 3 

1 African Palliative Care Association, Programs, 

Centurion, South Africa, 2 African Palliative Care 

Association, Grants Management, Kampala, Uganda, 


Background: Through rapid appraisals held in 

Zambia and Zimbabwe, the African Palliative Care 

Association (APCA) has developed mechanisms and 

tools to support its partners identify policy and gender 

impediments and human right issues that hinder 

palliative care (PC) provision to patients with lifethreatening 

illnesses across Africa. 

Method: APCA evaluated the differences between 

men, women, boys and girls and their experiences of 

PC services. Through key informant interviews and 

single- and mixed-sex focus group discussions on 

social, physical, emotional support and human rights 

issues, first-hand experiences from patients and 

health care workers on the challenges surrounding 

human rights and PC were collected 

Discussion: Men and women alike highlighted 

money and transport as the major barriers to 

accessing care. More women access the care available, 

even though they take on the burden of care for the 

family. Men still present late to health services due to 

their family responsibilities. Children, especially girls, 

take on significant responsibility for parents and 

grandparents suffering from life limiting illnesses. 

Lessons learned: Despite the significant challenges, 

it is key to create an environment that enables access 

to care. National policy and legislation documents 

need to appreciate and reflect access to PC for all and 

in turn need to be understood and implemented by 

health care workers to ensure patients know and 

understand their rights. 

Recommendation: Challenges need to be 

addressed through reviewing national legislation and 

policy documentation which can be amended to 

include and support PC service delivery to ensure that 

the people who need it most receive it. 



Heart Sink Encounters - The Emotional Strain 

of End-of-Life Care for Out-of-Hours doctors 

Nelson A. 1 , Taubert M. 2 

1 Marie Curie Cancer Care, Wales Cancer Trials Unit, 

Cardiff, United Kingdom, 2 Cardiff University, 

Velindre Hospital Palliative Care Department, Cardiff, 


Background: Palliative care in the out-of-hours 

period has been the focus of attention in many 

countries. The unpredictability of the clinical state of 

this sometimes frail patient group means that out-ofhours 

doctors may be confronted with many different 

end-of-life care situations. Patients in the out-of-hours 

period are seen by generalists who may not have any 

training in palliative care and the potential for stress 

from these sometimes emotional encounters to nonspecialists 

is not well researched. 

Objectives: We aimed to establish how prepared 

doctors who work regular out-of-hours shifts felt 

when dealing with end-of-life issues and palliative 

care patients and whether they felt they were 

emotionally equipped to do so. 

Methods: Semi-structured interviews were 

conducted with nine out-of-hours GPs. A detailed 

analysis of transcripts using Interpretative 

Phenomenological Analysis was undertaken. 

Results: A predominant theme expressed by GPs 

related to unease and even heart sink moments when 

having to deal with palliative care issues out-of-hours. 

‘Heart sink’ in this context, referred to the subjective 

experience of the clinician. Emotional ‘housekeeping’, 

i.e. looking after one-self after emotionally 

charged encounters, was felt to be a very important 

process and GPs used a range of coping mechanisms, 

including reflective time, sharing with peers, 

compartmentalisation and personal empathy to deal 

with stress. 

Conclusion: The emotional effects of palliative care 

encounters on out-of-hours general practitioners 


should not be underestimated. The isolated work 

pattern in UK out-of-hours services means that GPs 

are left to deal with problems alone. Pressed services 

may encourage a culture where discussion or debrief 

with a colleague after a palliative care encounter is not 

perceived as a practical option. This may contribute to 

work-related burnout in this group of doctors and outof-hours 

services need to be aware of this issue, when 

planning for their services. 



A Pilot Study of the Relationship between 

Acceptance and Rehabilitation Outcomes in 

Patients Receiving Specialist Palliative Care 

Low J.T. 1 , Davis S.E. 1 , Drake R. 1 , King M.B. 2 , Turner K. 3 , 

Tookman A. 4 , Jones L. 1 

1 UCL Medical School, Marie Curie Palliative Care 

Research Unit, London, United Kingdom, 2 UCL 

Medical School, Mental Health Sciences, London, 

United Kingdom, 3 Marie Curie Hospice, London, 

United Kingdom, 4 Royal Free NHS Trust, London, 


Background: Rehabilitation in palliative care aims 

to maximize physical and psychological functioning, 

but negative thoughts can hinder patients from 

attempting this approach. Acceptance and 

Commitment Therapy (ACT) is a form of talking 

psychotherapy which helps to support patients to 

manage negative emotions by improving their 

psychological flexibility. ACT has been used in many 

health related behavioural interventions, but not in 

palliative care rehabilitation. This study aimed to 

investigate the relationship between acceptance (as 

conceptualised in ACT), psychological morbidity and 

physical outcomes. 

Method: Cross-sectional study in which a 

consecutive sample of patients attending a specialist 

palliative care day therapy unit for rehabilitation 

completed 

(i) AAQ-II to measure acceptance; 

(ii) Kessler-10 to measure psychological morbidity. 

Physical function was assessed by 

(i) timed 2 minute walking test; 

(ii) a minute sit to stand test. 

Correlation statistics and multivariable regression 

analyses were used to explore the strength of 

relationship between acceptance and psychological 

morbidity and physical function with a sample of 101 

patients. 

Results: 101 patients were recruited, mainly white 

females with a mean age of 64 years. Correlation 

analysis showed a negative moderate association 

between acceptance and psychological morbidity (R=- 

0.59) and a weak positive association between 

acceptance and distance walked (R=0.21) and sit to 

stand (R=0.27). Further regression analysis identified 

that only the relationship between acceptance and 

psychological morbidity was statistically significant. 

Conclusions: The negative association between 

acceptance and psychological morbidity suggests it 

may be possible to reduce psychological morbidity by 

improving patients’ acceptance using an ACT-based 

intervention. Future work is now needed to develop an 

ACT-based intervention in palliative care rehabilitation 

and to test its acceptability and feasibility. 



Risk Communication in Patients with 

Metastatic Cancer 

Williams M. 1 , Nelson A. 2 , Byrne A. 3 

1 Nevill Hall Hospital, Aneurin Bevan Health Board, 

Palliative Medicine, Abergavenny, United Kingdom, 

2 Marie Curie Cancer Care, Cardiff, United Kingdom, 

3 Llandough Hospital, Palliative Medicine, Cardiff, 


Introduction: Communication is a critical to the 

practice of nursing and medicine. It is central to the 

doctor-patient relationship, providing information 

for families, carers and other healthcare professionals. 

Communication may involve discussing the risks of a 

particular treatment or events happening during a 

patient’s illness e.g. oncological treatments, 

developing metastatic spinal cord compression. Risk 

communication involves a shared discussion of 

information concerning a risk between the patient 

and healthcare professional, allowing improved 

comprehension, and ultimately more informed 

decision making, however it can leave doubts about 

the future for patients. Risk communication is a 

complex subject which is becoming increasingly 

important for patients and healthcare professionals. 

The knowledge in advanced cancer is limited. 

Aim: Explore what information people with 

metastatic cancer desire when confronted by a risk 

and how information should be communicated. 

Method: A qualitative study was conducted, using 

focus groups to allow exploration of patients’ ideas 

and attitudes. Data collected was analysed through a 

thematic approach. 

Results: Two focus groups were conducted. Four 

ordinate themes were found, one of which was risk 

communication. This theme discussed how the 

quantification of risk is perceived by the patient, 

aspects of individualism regarding the information 

sought, and the varying presentation styles required. 

Participants expressed varying information needs, 

individuality in the intrepretation of information, 

and therefore the need for different techniques to 

communicate a risk. 

Conclusion: The study highlights the complexity of 

risk communication (which considers benefits versus 

burdens of a situation) in a group of patients with 

metastatic cancer. It reflects the individuality needed 

when framing risk and ensuring information given is 

appropriate for the individual. This will help to 

succeed in giving information which is remembered 

and acted on. 



A Critical Review of Advance Directives in 

Germany: Attitudes, Use and Physician 

Compliance 

Evans N. 1 , Meñaca A. 1 , Andrew E.V.W. 1 , Bausewein C. 2 , 

Higginson I. 2 , Harding R. 2 , Pool R. 1 , Gysels M. 1 







Background: Compliance with patients’ wishes as 

set out in advance directives (ADs) is increasingly 

important and legislated in Europe. Recent legal 

changes in Germany make non-compliance a 

criminal offence. In light of such developments, we 

aim to assess the evidence on attitudes towards, use 

of, and physician compliance with ADs in Germany. 

Methods: Critical review. Studies on ADs, identified 

from a systematic review of culture and end-of-life 

care in Germany (in 6 electronic databases, 3 journals, 

reference lists, and grey literature), were included. A 

qualitative meta-synthesis identified cross-cutting 

themes. 

Results: Thirty-three studies (1990-2009) were 

identified (76% quantitative). Key themes were: 

awareness; utilization; compliance; and, patients’ 

desired bindingness of ADs. There was a positive trend 

between awareness and study publication date. The 

use of ADs however varied considerably (0.3-62%, 

depending on study population). The proportion of 

people who believed ADs to be important was high 

compared with use. Fears about ADs’ purpose and 

possible abuse were identified. There were 

contradictory findings regarding who patients feel 

should initiate discussion of ADs (physicians or nonphysicians). 

Difficulties faced by physicians 

informing patients about ADs and non-compliance 

were frequently reported in the literature. More 

information about patient wishes led to greater 

physician compliance. Conflicting results were 

reported regarding patient’s desired level of 

bindingness of ADs. 

Conclusion: Although there is increasing awareness 

of ADs in Germany, there remains low use, fears of 

abuse and contradictory evidence regarding their 

desired level of bindingness. Uncertainty as to who 

should initiate discussion and physician discomfort in 

talking about ADs can hamper patient-physician 

communication. Although legal changes will improve 

compliance, low awareness, fears and uncertainties 

surrounding ADs must be addressed if AD use is to 

increase. 





Talking about Bereavement and Palliative 

Care with High School Students. An Italian 

Experience 

Beccaro M. 1 , Gollo G. 1 , Di Leo S. 1 , Giordano M. 2 , Igazzini 

J. 2 , Servente V. 2 , Vignali S. 2 , Costantini M. 1 


Palliative Care Network, Genoa, Italy, 2 National 

Cancer Research Institute, Hospice Maria Chighine, 

Genoa, Italy 

Aims: Developing and preliminarily testing an 

educational package on bereavement and strategies to 

deal with it, addressed to high school students. 

Study population: 8 classes of 2 high schools in 

Genoa. 

Design and methods: Development and 

evaluation of package was conducted using the 

Medical Research Council (MRC) Framework for the 

Evaluation of Complex Interventions. The project is 

divided into: 

1) screening of the film “Gracie” (Guggenheim D, 

2007) and discussion with students on the concepts of 

bereavement and loss; 

2) a meeting per class aimed at eliciting students’ 

point of view on bereavement and strategies to deal 

with it, performed by a clinical psychologist expert on 

bereavement and palliative care and a hospice nurse; 

3) a preliminary evaluation of the package by means 

of ad hoc questionnaires. 

Statistical analysis: Descriptive and content 

analysis of the questionnaires; comparisons between 

the students answers through paired McNemar Tests. 

Results: Valid questionnaires were filled in by 89% 

and 84% of 159 students in the initial and final 

evaluation. Content analysis led to identify 6 topics 

on bereavement and 8 topics on strategies to deal with 

it. Concerning the first one, most students refer to loss 

and suffering. No significant difference was observed 

in the distribution of the topics in the initial and final 

evaluation. Concerning the second one, 

“offer/receive support”, “distraction” and 

“express/promote the expression of thoughts and 

emotions” are the most represented. The distribution 

of the topics in the show a significantly higher 

proportion of students reporting on the first (P=0.02) 

and the third (P< 0.01) of the topics above mentioned. 

Conclusions: Our findings suggest that this package 

might improve attitudes of high school students on 

strategies to deal with the loss of a loved one. 

However, before being proposed at a regional or 

national scale, the package has to be evaluated in a 

larger sample. 

This work was supported by Liguria Region. 



Moral Distress in Withholding and 

Withdrawal of Treatment 

Yong W.C. 1,2 , Lee A. 2,3 

1 Khoo Teck Puat Hospital, Geriatric Medicine, 

Singapore, Singapore, 2 Dover Park Hospice, Palliative 

Care Medicine, Singapore, Singapore, 3 Tan Tock Seng 

Hospital, Palliative Care Medicine, Singapore, 

Singapore 

Aims and methods: Moral distress is well described 

in nursing circles and is defined as “when one knows 

the right thing to do, but constraints make it 

impossible to pursue the right course of action”. It is 

often related to life prolongation and performing 

unnecessary tests on terminally ill patients. However, 

little is known of moral distress amongst doctors. In 

the culture of “cure and treatment”, we hypothesize 

that the withholding or withdrawing of treatments, 

on the contrary to what has been described amongst 

nurses, do lead to moral distress amongst doctors, 

even though ethically permissible. A questionnaire 

survey was conducted on a group of palliative care 

doctors in training, with the aims of determining: 

(1) The incidence of moral distress when withholding 

or withdrawing treatment 

(2) If the perception of moral distress differs between 

withholding and withdrawal of treatment 

(3) The impact of moral distress, if present. 

Results: 10 out of 11 trainees completed the survey. 

40% of the respondents had not experienced moral 

distress as a result of either withholding or withdrawal 

of treatment. 60% of the respondents experienced 

variable level of moral distress with both withdrawal 

and withholding of treatment. Of the 60% of 

respondents with moral distress, 50% felt a higher 

level of moral distress with withdrawal of treatment, 

243 


(Friday)


(Friday) 


33.3% felt the same level of moral distress and 16.7% 

did not respond.20% of the respondents had 

considered quitting palliative care due to moral 

distress. The commonest symptoms from moral 

distress are: fatigue, guilt, anxiety and feeling 

powerless to change one’s situation. 

Conclusion: Majority of palliative trainee doctor had 

experienced moral distress when withholding and/or 

withdrawing treatment. The distress experienced in 

withdrawal of treatment was higher than that in 

withholding of treatment. A minority had ever 

thought of quitting palliative medicine as a result and 

its impact was across all domains of suffering. 




Palliative Care in Patients with Migrational 

Background 

Hait B. 1 , Prinz-Rogosch U. 1 

1Katharinen-Hospital Unna, Palliative Care, Unna, 

Germany 

In Palliative Care (PC) we deal with extreme 

situations.Especially people with a migrational 

background are highly exposed to stress in case of 

advanced illness. Hence it’s very important to offer PC 

targeted at this group of patients. However we 

experience contacting PC team by these people more 

seldom, usually in a late stage of disease. 

Our aim was to analyze the peculiarities of PC in 

patients and families with migrational background 

and to look for tools to optimize the end-of-life-care. 

Following thoughts and conclusions are based on our 

12-year experience in PC with in- and out-patients. 25 

patients with migrational background were chosen 

and analyzed; the inclusion criteria were migrational 

background and an advanced disease. The analysis 

happened by means of interdisciplinary 

documentation, among others our manuals dealing 

with terminal care in people with other religious 

beliefs. 

Results: The reasons we have problems in 

communicating with these patients are: language 

barriers, cultural and ethnic differences, distinctions 

in traditions, prohibition of disease clarification by 

family and therefore ignorance of patient autonomy, 

finally the lack of cultural competence of 

professionals; all that act as an obstacle in creating a 

confidence base. This base, however, is a key 

requirement for the patient to be fully understood by 

caregivers. Extreme sensitivity of the team to achieve 

good communication with patient and family seems 

to be of great importance. 

Conclusions: 

1. People with migrational background portray a nonhomogenous 

group, differing even within others of 

the same background due to varying educational 

level, degree of integration and cultural discrepancies. 

Therefore a good PC can only be possible, if it is 

highly individual. 

2. Cultural competence and empathy of care givers 

enable deeper and esteemed PC, which is to be 

achieved by more precise arrangements within the 

team and recognition of social and ethnic 

peculiarities of patients and families. 



Assessment and Management of Depression in 


Torres M.L. 1 , Ribeiro A.S. 1 , Silva M.I. 1 , Pinho M.J. 1 

1 USF Viver Mais, Maia, Portugal 

Introduction: Clinicians who care for the 

terminally ill are often faced with patients who are 

experiencing psychological distress, like depression. It 

is widely misunderstood, underdiagnosed, and 

undertreated. For this, contributed the mistaken belief 

that all dying patients are “depressed”, the clinician´s 

stigma of the diagnosis of depression and the 

apprehension about possible drug interactions. 

Aim: Review the assessment and management of 

depression in patients receiving palliative care. 

Methods: Research in Evidence Based Medicine sites 

of articles published between 2001 and 2009, written 

in English, with the keywords “depression” and 

“palliative care”. 

Results: A careful diagnostic interview is the gold 

standard method for assessing whether patients are 

clinically depressed. Feelings of hopelessness, 

helplessness, worthlessness, guilt, and suicidal 

ideation are among the best indicators of clinical 

depression in terminally-ill patients. 

Major depression is a treatable condition and the first 

step is to relieve uncontrolled symptoms, particularly 


Supportive psychotherapy can be provided by the 

primary medical caregiver. This alone or an approach 

that combines it with patient and family education 

and judicious use of antidepressant medication may 

be sufficient to treat depression. During this time, 

maintaining ongoing contact with the patient 

ensures that symptoms and treatment efficacy will be 

continuously reevaluated. Among the indications for 

referral to a psychiatrist are the uncertainty to the 

diagnosis; history of a major psychiatric disorder; 

patients’s suicidal, psychotic or unresponsive to 

therapy. 

Conclusion: Depression is the most common 

mental health problem encountered in palliative 

medicine. Failure to diagnose and treat depression 

impairs the quality of life. For this reason, all the 

clinicians must understand how to deal with this 

pathology in order to improve the best management. 



Assessing the Feasibility, Acceptability and 

Potential Effectiveness of Dignity Therapy: 

Results of Two Phase II RCTs 

Hall S. 1 , Goddard C. 1 , Opio D. 2 , Speck P. 1 , Higginson I.J. 1 


Rehabililtation, London, United Kingdom, 2 Guy’s & 

St Thomas’ Hospital NHS Trust, Palliative Care, 


Introduction: The aim of these studies is to assess 

the feasibility, acceptability and potential 

effectiveness of Dignity Therapy for (i) older people in 

care homes, and (ii) patients with cancer referred to 

hospital-based palliative care teams. 

Methods: Sixty residents of care homes for older 

people and 45 patients with advanced cancer were 

randomly allocated to either Dignity Therapy or a 

standard care Control Group. Quantitative and 

qualitative outcomes were assessed in face-to-face 

interviews at one and eight week follow up (residents) 

and one and four week follow-up (cancer patients). 

The primary outcome was dignity-related distress, 

assessed using the Patient Dignity Inventory. 

Secondary outcomes included quality of life and 

depression. 5-point rating scales were used to assess 

acceptability of therapy and taking part in the study. 

Results: Dignity Therapy was acceptable to 

participants in both studies: they felt it had helped 

them, made their life more meaningful and 

purposeful, and had or would help their families. 

However, participants in the control group also 

seemed to benefit from their participation in the 

study. There were no significant differences between 

the intervention and control groups in distress or 

quality of life in either study. Recruitment was slow in 

both studies, and the intervention took longer to 

deliver than anticipated. 

Conclusions: Showing significant benefits regarding 

life being more meaningful, increasing will to live, 

and helping their families suggests that Dignity 

Therapy may be a way of enhancing the end of life 

experience for the relatively small proportion of care 

home residents and patients with advanced cancer 

who took part in these studies. Qualitative analysis of 

interviews with participants is currently underway to 

explore these findings in more depth. 

Funding: Supported by grants from The Dunhill 

Medical Trust (care home residents) and Dimbleby 

Cancer Care (patients with advanced cancer). 



Evaluation of Spiritual Assessment by Healthcare 

Professionals 

Liu K. 1 , Ryan R. 2 , Galbraith S. 2 

1 University of Cambridge, School of Clinical 

Medicine, Cambridge, United Kingdom, 

2 Addenbrooke’s Hospital, Palliative Care Service, 

Cambridge, United Kingdom 

Background: Spiritual care is an essential 

component of palliative care, as acknowledged by 

NICE and the WHO. How best to deliver this, by 

whom, and how to assess spiritual needs remain 

contested areas. 

Aim: To compare the frequency of ´spiritual´ 

questions that are asked and encountered by nonmedical 

and medical professionals, and to compare 

demand for training and support to address them. 

Method: A cross-sectional study of 22 medical and 

non-medical professionals, working in General 

Medicine, Oncology or hospice-based Palliative Care 

(including chaplain) was performed. Employees 

completed a questionnaire using a 5-point scale, to 

assess the frequency of asking or being asked nine 

questions on a spiritual theme, and the level of 

demand for training or support in addressing them. 

Scores were compared between the three specialties 

and chaplain, as well as between medical and nonmedical 

professionals in each specialty. 

Results: The average frequency of spiritual dialogue 

increased in the order: General Medicine, Oncology, 

Palliative Care, chaplain. This applied to both 

professional and patient generated questions, though 

the former occurred more frequently overall. The 

reverse order applied for demand in training and 

support. We found little difference between doctors 

and other health professionals overall, however in 

General Medicine non-medical professionals reported 

a higher frequency of spiritual dialogue than doctors. 

Conclusions: Spiritual questions were asked more 

frequently in specialties viewed as dealing with end of 

life care. The sample size did not allow statistical 

analysis between subgroups, though spiritual needs 

existed in patients from all three specialties. There is 

demand for training and support from professionals 

who feel insufficiently prepared to address patients’ 

needs, despite (or perhaps contributing to) the 

infrequent spiritual dialogue seen in General 

Medicine. This may help close the experience gap 

between medical and non-medical staff. 


Withdrawn 



Study on Emotional Distress of Old Adults 

from Palliative Care Units 

Toma S. 1 , Ciucurel C. 1 , Iconaru I.E. 1 , Georgescu L.I. 1 , 

Tudor M.I. 1 

1 University of Pitesti, Kinethotherapy, Pitesti, 


Introduction: Palliative care represents a complex, 

active and intensive treatment in order to promote 

and to maintain the best quality of life for patients 

with progressive diseases and for their carers. It 

involves multi-professional working to ensure that 

physical, psychological and spiritual special needs of 

these patients are identified and meet. 

Aim and scope: Emotional disorders and symptoms 

like depression, anxiety or panic are very frequent on 

third aged persons with chronic or terminal illness. 

Knowing the level of emotional distress of each 

beneficiary can help multidisciplinary care team in 

the process of evaluation and improvement of 

palliative care services. 

Material and methods: The research activity was 

focused on a study group including 20 individuals 

with an average age of 70 years old that were 

hospitalized in a palliative care unit. Subjects were 

asked to answer the questions of “Profile of Emotional 

Distress Questionnaire” (PED, Opris and Macavei 

2005), which is a scale with 26 items that measures 

negative and dysfunctional emotions.The study 

consisted in registration and interpretation of the 

effects of intervention activities (relaxation and 

massage therapy, active listening and pleasant 

activities) on symptoms of emotional distress. 

Results: Half of the individuals accumulated more 

than 80 points (61,5%) from total number of 130 

points, which associates with a high level of 

emotional distress. 8 persons (40%) had an average 

number of 59 points (45,3%) and only 2 subjects 

(10%) had a positive emotional state with 30 points 

(23%). Emotions like anxiety and worthless registered 

the highest score, followed by melancholy and 

depression. Final test results showed an improvement 

(25%) of emotional state and self-esteem for all the 

patients. 

Conclusions: Emotional distress management can 

be a useful tool focused on individual psychological 

needs, for improving quality of life and palliative care 

services. 




Telemedicine Communication in Home-based 

Palliative Care. Mapping the Experiences of 

those Involved 

van Gurp J.L.P. 1 , van Selm M. 2 , van Leeuwen E. 3 , Vissers 

K. 1 , Hasselaar J. 1 

1 Radboud University Medical Center Nijmegen, 


Nijmegen, Netherlands, 2 University of Amsterdam, 

Media Studies, Amsterdam, Netherlands, 3 Radboud 

University Medical Center Nijmegen, IQ Healthcare, 

Medical Ethics, Nijmegen, Netherlands 

RQ: How do participants in the practice of homebased 

palliative care (i.e. patients, informal caregivers, 

general practitioners, and members of the specialist 

palliative care team) experience the mediation of 

interpersonal communication by a multifunctional 

telemedicine-application, primarily used for weekly 

video calling with the specialist palliative care team? 

Theory: This article will focus on the specific 

application of telemedicine in the practice of homebased 

palliative care. In general, the idea is that 

telemedicine technologies will offer new possibilities 

to transfer hospital expertise to the patient´s home 

instead of transferring patients to the hospital. 

However, new telemedicine technologies will also 

transform current communication in the practice of 

home-based palliative care by amplifying certain 

elements (e.g. visual contact) but reducing others (e.g. 

physical contact). This transformation will result 

either in a more ideal form of well-informed, 

understandable, hopeful, sensitive, and open 

communication or in a rather technologized and 

medicalized communication which only obstructs 

mutual understanding. 

Methodology: An ethnographic study has been 

designed, in which we will collect data by conducting 

semi-structured interviews with patients, informal 

caregivers, general practitioners, and members of the 

specialist consultation team for palliative care and 

observing those involved while participating in 

teleconversations between home and hospital. A pilot 

study, including four patients, their informal 

caregivers, gp’s, and the consultation team, starts in 

November. 

Results: The results of this pilot study will be 

presented. 

Conclusion: We will describe the central dimensions 

of telemedicine experiences of palliative patients, 

informal and formal caregivers, general practitioners 

and medical specialists. We will discuss these 

dimensions in terms of maintaining, elaborating or 

modifying interpersonal communication in a homebased 




Emotional Response to Visual Stimuli: 

Comparison between Palliative Care Units of 

Runcorn (UK) and Granada (Spain) 

Montoya R. 1 , Schmidt-Rio J. 1 , Gomez-Chica A. 2 , Campos- 

Calderon C. 3 , Marti C. 1 , Garcia-Caro M.P. 1 

1 University of Granada, Nursing, Granada, Spain, 

2 Baza General Hospital, Baza, Spain, 3 University of 

Granada, Granada, Spain 

Background: Palliative care in the UK and Spain, 

differ quantitatively and qualitatively. These 

differences are due to the different level of palliative 

care development in both countries, as well as 

sociological aspects. These differences could influence 

emotional responses of palliative patients to daily 

stimuli. 

Aim: Show the differences in emotional response 

among terminally ill patients in Runcorn (UK) and 

Granada (Spain). 

Methods: A sample of 60 terminally ill patients (24 

UK and 36 Spain) was chosen among palliative care 

units. Weak, tired and cognitive impaired patients 

were excluded. Age (M=60.7SD=15.63) 41.7% of them 

women. 25 Pictures were selected from the 

International Affective Picture System (IAPS). These 

pictures were divided into 5 conditions, according to 

their affective value and physiological arousal. 

Patients were asked to rate each picture using the Self- 

Assessment Manikin (SAM) in the following 

dimensions: Valence (Pleasant-Unpleasant) Arousal 

(excited-relaxed) Dominance (emotional control). T 

Student test was used to analyze the data. 

Results: UK patients rated very unpleasant pictures 

as more unpleasant (p=0.01), and very pleasant 

pictures as more pleasant (p=0.07), than Spanish 

patients. On the other hand, Spanish patients rated 

neutral and mildly unpleasant pictures, as more 

exciting than English patients (p=0.01 p=0.04 

respectively). According to our data, English patients 

seem to have more emotional control than Spanish 

patients for every picture condition (p=0.000 p=0.000 

p=0.020 p=0.021 & p=0.000). 

Conclusion: These results suggest that Spanish react 

more strongly to daily stimuli than UK patients, 

although English patients rated more extremely nondaily 

stimuli. According to the reviewed studies, 

Spanish response to stimuli is associated with 

emotional impairment. Comparing to Spanish ones, 

UK patients show a higher level of emotional control 

which could be related to patient´s diagnosis and 

prognosis awareness in each country. 



Overcoming Barriers to Research in Venous 

Thromboembolism in the Palliative Care 

Setting: Introducing the Thrombosis Research 

in Advanced Disease (TRAD) Alliance 

Noble S. 1 , Hood K. 2 , Maraveyas A. 3 , Evans J. 2 , Roberts V. 2 , 

Johnson M. 4 

1 Cardiff University, Newport, United Kingdom, 

2 Cardiff University, Cardiff, United Kingdom, 3 HYMS, 

Hull, United Kingdom, 4 HYMS, York, United 


Introduction: The challenges in the treatment and 

prevention of venous thromboembolism (VTE) have 

attracted increasing clinical and academic interest 

within palliative care. Whilst the management of 

cancer associated VTE is well established in clinical 

guidelines, the research informing them excludes 

patients with poor performance status, limited 

prognosis, brain metastases, thrombocytopenia and 

bleeding. Research is needed in a representative 

population but the recruitment of such patients is 

fraught with practical, ethical and intuitional barriers. 

Methods: The Thrombosis Research in Advanced 

Disease (TRAD) Alliance has been developed to 

address some of these problems and is a joint venture 

between Cardiff University and Hull York Medical 

School, developed in partnership with Lifeblood: the 

Thrombosis Charity. Its aim is to develop a Europe 

wide Alliance of Palliative Care teams willing to 

contribute to the recruitment of patients into VTE 

studies within the palliative care environment as well 

as provide a forum for learning and dissemination of 

best practice. 

Results: To date 92 TRAD Allies from 7 countries 

have registered. Core funding has been secured to 

develop and run clinical research and two funded 

studies are currently open to recruitment. A further 

four projects are underway or awaiting funding. 

Conclusion: The management of cancer associated 

VTE in palliative care will continue to be guided by 

evidence from unrepresentative populations unless 

the necessary studies are undertaken in the advanced 

cancer setting. The TRAD Alliance provides an 

opportunity for clinicians to address these issues on a 

pan Europe basis and through collaboration and a 

shared vision will achieve its aims. 



Hand-held Dynamometry: Reliable Enough 

for Research? 

Stone C.A. 1 , Nolan B. 1 , Lawlor P.G. 2 , Kenny R.A. 3 




Ottawa, ON, Canada, 3 Trinity College Dublin, 

Department of Gerontology, Dublin, Ireland 

Introduction: Hand-held dynamometry(HHD)has 

been shown to be reliable when used to measure 

lower limb muscle strength in elderly fallers and 

hospitalised older persons, but less reliable in healthy, 

strong individuals. The aim of this study is to assess 

reliability of HHD when used to measure quadriceps 

strength in patients with advanced cancer recruited to 

a study of risk factors for falling. 

Methods: Reliability was tested on consecutive 

recruits to the falls risk factor study. Subjects were 

seated, hips and knees at 90 0 , HHD placed 10cm distal 

to tibial tuberosity. The subject was directed to try to 

straighten the leg with maximal force over 4 seconds 

against the resistance of tester. Best of 3 recorded. 

Test-retest reliability: 30 patients had repeat 

testing by the same researcher on the right (R) leg, 


after a one hour interval. 

Inter-rater reliability: 15 patients had repeat 

testing by 2 researchers on R leg after a one hour 

interval. Analysis; subject mean-vs-differences plotted 

and Kendall’s correlation coefficient calculated. If 

differences unrelated to mean, measurement 

error(ME) and 95% range calculated.Otherwise, 

geometric standard deviation (GSD) and 95% limits 

calculated from log transformed data. Intraclass 

correlation (ICC) coefficients were calculated. 

Results: 

Test-retest reliability: Mean age 60±12.5 years, 

18/30 male. Mean R leg strength 25.4±9.7lbs.Kendall’s 

tau=0.33,p=0.01. GSD=1.12(95% limits for the mean 

value calculated from GSD are 20.3-31.8lbs). ICC=0.9. 

Inter-rater reliability: Mean age 69.7±9.6 years, 

7/15 male. Mean R leg strength 28.9±7.9lbs. Kendall’s 

tau=0.18 p=0.3. ME=3.78lbs, 95% range=7.4lbs(true 

value for 95% subjects whose actual measurement was 

equal to the mean value would lie between 21.49- 

36.31. ICC=0.83. 

Conclusions: Although proportion of total variance 

due to measurement error is low, magnitude of 

measurement error is high, precluding use of HHD as 

a reliable method of quadriceps strength testing in 

patients with advanced cancer. 




The Financial Costs of Involvement Patient 

and Carers in Research Design Supportive and 

Palliative Care - Who Pays? Findings from the 

Cancer Experiences Collaborative (CECo) 

Preston N.J. 1 , Turner M. 1 , Johnson W. 2 , Lussier D. 3 , Green 

B. 3 , Kyffin M. 3 , Pedder D. 3 , McGill I. 3 , Robinson J. 3 , 

Capstick G. 3 , Jacks D. 3 , Rita H. 3 , Froggatt K. 1 


End of Life Care, Lancaster, United Kingdom, 2 St 

John’s Hospice, Lancaster, United Kingdom, 

3 Lancaster University, Research Partner Forum, 



Background: There is growing demand to involve 

patients and carers (referred to as users) in decision 

making in health service delivery. Researchers are 

now being asked to seek users´ opinions in relation to 

research design. In the UK this is often a pre-requisite 

when applying for research funding to government or 

charitable bodies. The Cancer Experiences 

Collaborative (CECo) set up and funded a research 

partner group in 2007. Twelve group members meet 

on a monthly basis principally to comment upon 

research proposals and to develop their own research. 

The users are trained in research appraisal skills. 

However, there are costs associated with this process. 

Research aim: To establish the cost of user 

involvement in developing research proposals. 

Study design: Costs were calculated for one year 

which included training, presenting at conferences, 

travel, parking, time (according to UK guidelines from 

INVOLVE) and lunch. No payments are made for 

their time preparing for the two hour meeting. 

Results: The average costs incurred for the last year 

were €6,396. These break down to: training €1,481; 

conferences €1148; travel €306; parking €163; time 

€2,599 and lunch €699. The group met 11 times, with 

the average cost of a meeting being €581. On average 

one researcher consulted the group at each meeting 

for one hour. The true cost of each consultation was 

€291. The full cost of one consultation was paid by a 

researcher who had already received funding for their 

study; CECo paid for the other consultations. 

Conclusion: The impact of user involvement in 

research has been highlighted as beneficial (Brett 

2010). However there do not seem to be any obvious 

sources of funding for researchers to use to pay for 

these consultations. CECo has so far met these costs 

but when this funding ceases it is unlikely this will 

continue. A mechanism to pay for user involvement 

in developing research needs to be identified to 

maintain high quality consultation. 

245 


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Achieving Feasibile Trial Design in Delirium 

Therapeutics Evaluation in Palliative Care 

Agar M. 1 , Draper B. 2 , Caplan G. 3 , Mark H. 4 , Shelby-James 

T.M. 5 , Rowett D. 6 , Lawlor P. 7 , Sanderson C. 8 , Plummer J. 9 , 

Eckermann S. 10 , Currow D. 11 

1 Braeside Hospital, Pallaitive Care, Prairiewood, 

Australia, 2 University of NSW, Aged Care Psychiatry, 

Sydney, Australia, 3 Prince of Wales Hospital, Post 

Acute Care Services, Syndey, Australia, 4 University of 

NsW, School of Medical Sciences, Sydney, Australia, 


Services, Adelaide, Australia, 6 Repatriation General 

Hospital, DAW PARK, Australia, 7 Our Lady’s Hospice, 

Dublin, Ireland, 8 Calvary Healthcare, Kogorah, 

Australia, 9 Flinders Medical Centre, Bedford Park, 

Australia, 10 University of Wollongong, Wollongong, 

Australia, 11 Flinders University, Department of 

Palliative and Supportive Services, DAW PARK, 

Australia 

Background: Delirium is prevalent in the palliative 

care setting and is associated with distressing 

symptomatology and poor prognosis. Trials in 

delirium therapeutics pose significant challenges; 

understanding strategies in trial design will facilitate 

research in this area. 

Results: A randomised multi-site double blind 

parallel arm placebo controlled phase III study to 

compare the effectiveness and toxicity of risperidone, 

haloperidol, and placebo with rescue midazolam in 

the management of palliative care patients with 

delirium is current underway in 9 sites in Australia. 

The study is exploring specific target symptom relief 

and includes systematic evaluation of toxicity, in 

particular extra-pyramidal toxicity and sedation. To 

date 61 people have been randomised. 

Discussion: The study is now the world’s largest RCT 

in the management of delirium (not just in palliative 

care). It will be the first study to evaluate the efficacy 

of antipsychotics to control targeted delirium 

symptoms and to also consider broader implications 

on caregiver and patient distress. The study outcomes 

have deliberately been chosen to measure outcomes 

directly translatable into clinical practice, which also 

improves clinician and family engagement in 

participation. The study period is short (72 hrs) 

reflecting the need of therapies to achieve adequate 

outcomes quickly if they are to provide benefit in the 

palliative setting. Person responsible (proxy) consent 

processes can be used successfully, and the participant 

information and consent discussions have improved 

ability to discuss delirium in lay terms and have 

identified the frequent questions families have about 

delirium and its management. Site initiation visits 

and ongoing participation in the study have 

improved confidence and awareness of clinical teams 

in relation to delirium identification and 

management; more systematic monitoring of 

response to medication (shift by shift delirium scores), 

person responsible (proxy) decision making. 



Palliative Care Patients’ Attitudes to 

Participating in Research Trials 

Jeyakumar J. 1 , Fleming J. 1 , Henson L. 1 , Thorns A. 1 

1 Pilgrims Hospice, Margate, United Kingdom 

Aims: There is reluctance to conduct research in the 

palliative population, despite evidence based 

medicine being the gold standard of clinical practice. 

The aim of this study was to assess patients’ views on 

participating in research trials and the degree of 

inconvenience they would consider acceptable. 

Study design & method: The survey, covering 3 

hospice sites, used a questionnaire adapted from one 

used to assess professional views on research at the 

same sites and was piloted on a group of patients. The 

sample consisted of admissions to the hospices, 

attendees at the day hospices and outpatient 

appointments over 1 month. 

Results: 120 patients were eligible to participate in 

the questionnaire. There was a response rate of 70% 

(84 patients). 67% of responders would be interested 

in participating in research if the trial would help 

others but would be unlikely to help themselves. 68% 

would be willing to participate in trials that may cause 

an improvement in symptoms but would be unlikely 

to change their underlying disease. A larger 

proportion would be willing to participate in trials 

that involved simple interventions, such as a 

questionnaire (76%), than in trials that involved 

complicated tests or multiple trips to hospital (18%). 

Responders who had cancer were less likely to want to 

participate in trials that involved taking extra tablets 

(29%) or having extra injections (17%) than non 

cancer responders (61% and 56% respectively). 

Conclusion: The responders to our questionnaire 

have shown that the palliative population are willing 

to participate in research trials. However, the type of 

intervention being trialled and the inconvenience to 

themselves are significant factors in determining 

whether they would participate. The next stage of the 

project is to compare the patients’ views with those of 

their professionals. 



Observing End of Life for Research Purposes: 

The Findings of a Pilot Study to Involve 

Professionals and Lay People in Key Aspects of 

Research Design 

Gambles M.A. 1 , Perkins E. 2 , Ellershaw J.E. 1 


Institute Liverpool, Liverpool, United Kingdom, 

2 University of Liverpool, Health and Community 

Care Research Unit, Liverpool, United Kingdom 

This paper identifies issues arising from pilot work 

undertaken to support a multi-site, ethnographic 

study of care delivered to patients in the last days or 

hours of their lives. The study is designed to assess the 

impact of the Liverpool Care Pathway on end of life 

care and involves non-participant observation of 

patients in two settings: Critical Care and Nursing 

Homes in England. Conducting such a study brings 

considerable ethical, moral and practical challenges 

(Lawton, 2001; Seymour, 2001) and preliminary work 

to identify the perspectives of staff and lay people was 

deemed necessary. 

Aim: The pilot study was designed to involve key 

professionals and lay people in shaping the main 

study. 

Method: The views of a range of staff working in ICU 

and Nursing Homes and those of patient/carer 

representatives were sought regarding the proposed 

research, using focus groups and telephone 

interviews. 3 focus groups of staff were undertaken in 

2 nursing homes (n=4, n=2, n=6), 2 focus groups were 

carried out with staff in 1 intensive care unit (n=4, 

n=4) and telephone interviews were conducted with 

representatives of patient groups (n=5). The 

interviews were audio-taped, transcribed verbatim 

and analysed thematically to highlight the 

challenges, barriers, and levers for success. 

Results/conclusions: A preliminary analysis has 

identified two broad themes: views on the nature of 

death and dying in public spaces; and the nature of 

the relationship between staff, patients and relatives 

at the end of life. More in-depth analysis is currently 

taking place and this paper will explore the findings 

in detail and the way in which they were incorporated 

into the design of the main study. 

This project was funded by the National Institute for 

Health Research Service Delivery and Organisation 

programme (08/1813/256).The views and opinions 

expressed therein are those of the authors and do not 

necessarily reflect those of the NIHR SDO programme 

or the Department of Health. 



Variety or Consensus? A Novel Approach to 

Eliciting Palliative Care Research Questions 

Rasmussen B.H. 1 , Lindqvist O. 1,2,3 , Fürst C.J. 2,4 , Lundh 

Hagelin C. 2,4,5 , Lundquist G. 6,7 , Sauter S. 2 , Tishelman C. 2,3 , 

on behalf of OPCARE9 

1 Umeå University, Department of Nursing, Umeå, 

Sweden, 2 Stockholms Sjukhem Foundation, Research 

& Development Unit in Palliative Care, Stockholm, 



Stockholm, Sweden, 4 Karolinska Institutet, 

Department of Oncology-Pathology, Stockholm, 

Sweden, 5 Sophiahemmet University College, 


of Radiation Sciences - Oncology, Umeå, Sweden, 

7 Palliative Team Västerbergslagen, County Council of 

Dalarna, Ludvika, Sweden 

OPCARE9 is an EU 7 th framework project with the aim 

of optimizing care of patients with cancer in the last 

days of life. The 9 participating countries include 7 in 

Europe, Argentina, and New Zealand. The goals of 

OPCARE9 are to systematize existing knowledge and 

identify knowledge gaps, leading to development of 

innovative research protocols to fill these gaps. The 

methodologies used include systematic literature 

reviews and Delphi panels. 

The Swedish team coordinates the international 

collaborative work package focusing on 

pharmacological and non-pharmacological alleviation 

of suffering. As reported elsewhere, a scoping exercise 

was conducted to identify the variety of nonpharmacological 

caregiving activities (NPCAs) carried 

out in palliative care facilities during the last days of 

life. Nearly 1000 NPCA statements were generated 

from 16 facilities in the 9 OPCARE9 countries. 

In a second phase, we contacted 53 senior researchers, 

internationally active in different fields. The aim of 

this phase was to compile research questions from 

different disciplinary perspectives, using the 

generated list of NPCAs as a basis for this. 

Alphabetized lists of the full data set of generated 

NPCAs were sent out, requesting that the researchers 

briefly browse the lists and generate three research 

questions that quickly come to mind from their 

disciplinary perspective. 

Responses were received from 32 researchers, who 

together generated over 150 research questions, from 

the perspectives of palliative medicine, nursing, 

occupational therapy, and social work, as well as 

sociology, anthropology, IT-sciences, medical history, 

art, psychology, complementary- and alternative 

therapies, informatics, etc. In this presentation we will 

discuss how the knowledge generated from these 

exercises can benefit palliative care research and 

practice. We will address benefits and risks of aiming 

to achieve variety rather than consensus, contrasting 

this approach with that of a traditional Delphi panel. 



Challenges and Opportunities in Designing 

Evaluations of Complex Service: The RE-AIM 

Framework 

Payne S. 1 , Seymour J. 2 , Ingleton C. 3 





Sheffield, Centre for Health & Social Care, Sheffield, 


Research aims: Adequate and rigorous methods are 

required to evaluate complex interventions in 

organisational service innovations when ‘real world’ 

factors make the choice of research methods 

complicated and randomised controlled trials 

inappropriate. This paper aims to assess the usefulness 

of the RE-AIM framework for end of life care service 

evaluations. 

Study design: The RE-AIM framework was 

developed in the USA to evaluate complex 

community based health care interventions. Using 

data from Marie Curie Cancer Care, a UK based 

charity, complex service reconfiguration intervention 

called the Delivering Choice Programme (DCP) which 

aimed to help providers and commissioners of 

palliative care to redesign services in order for patients 

to have more choice over their place of care and 

death; we will discuss components, strengths and 

weakness of the Framework. 

Results: We will consider the five components of RE- 

AIM : 

· Reach - the extent to which the DCP reached its 

intended audience 

· Effectiveness - improvements or adverse effects of the 

DCP 

· Adoption - the extent to which the DCP was taken 

up in various parts of the settings 

· Implementation - the extent to which the DCP was 

delivered as intended 

· Maintenance - the sustainability of the change 

attributable to the DCP at both individual and 

organisational levels. 

Conclusions: The cumulative bodies of research 

literature drawn directly from randomised control 

trials may be persuasive but there are limitations in 

the direct relevance of this evidence in specific 

practice situations, especially where complex 

interventions are the focus. The DCP evaluation 

represents a ‘real-world’ investigation of different 

types of service development and service 

reconfigurations, set against a dynamic socio-political 

context. The RE-AIM Framework offers a useful 

method to appraise these different types of evidence 

and suggest the way forward for policymakers. 




Real World Challenges - Involving Parents in 

Qualitative Research 

Nicholl H. 1 , Price J. 2 

1 Trinity College Dublin, Nursing and Midwifery, 

Dublin, Ireland, 2 Queen’s University Belfast, Nursing 

and Midwifery, Belfast, United Kingdom 

Aim: Drawing on the experiences gained from two 

separate qualitative Doctoral research studies carried 

out in Ireland the presenters will examine complex 

issues that can emerge when parents are involved in 

children’s palliative care research. Recommendations 

on how these issues can be managed will be outlined. 

Relevance to palliative care: Whilst research in 

children´s palliative care is increasing, an evidence 

base remains limited and lags behind that 

underpinning adult palliative care. Complex issues 

that can emerge when parents are involved in research 

need attention. This includes ethical considerations 

during recruitment; interview methods and skills; 

investigating potentially sensitive subjects and 

supporting participants during, and after, studies. 

Design, method and statistics: 

Study (a) used a qualitative interpretive approach to 

investigate bereaved parents (n=25) (both mothers 

and fathers) experiences of providing palliative care. 

Study (b) adopted a phenomenological approach to 

investigate care-giving by mothers (n=15) in children 

with complex needs. Both studies used in-depth 


Results: The presentation is relevant to those 

involved in palliative care research as methodological 

issues that can emerge during sensitive research with 

families will be addressed. The presentation will 

highlight the challenges that arose during two 

children’s palliative care nursing studies in Ireland. 

Recommendations on how to recruit participants and 

how best to involve, and support parents, during and 

after research interviews will be provided. 

Conclusions: Key issues that have emerged during 

qualitative research studies with parents will be fully 

explored. 



Feasibility Study of the Sheffield Profile for 

Assessment and Referral for Care (SPARC): A 

Holistic Needs Questionnaire 

Ahmed N. 1 , Hughes P. 1 , Winslow M. 1 , Bath P. 2 , Collins 

K. 3 , Noble B. 1 

1 The University of Sheffield, Academic Unit of 

Supportive Care, Sheffield, United Kingdom, 2 The 

University of Sheffield, Centre for Health Information 

Management Research (CHIMR), Information School, 

Sheffield, United Kingdom, 3 Sheffield Hallam 

University, Centre for Health and Social Care 

Research, Sheffield, United Kingdom 

Background: Previous studies suggest that cancer 

and non-cancer patients have needs that are not 

being fully met at the moment. SPARC is a 

multidimensional holistic screening tool which 

provides a profile of needs (i.e. physical, 

psychological, social, spiritual) to identify patients 

who may benefit from additional supportive or 

palliative care, regardless of diagnosis or stage of 

disease. Its aim is to identify patients who could 

benefit from additional supportive or palliative care. 

Aim(s): A feasibility study (randomised controlled 

trial) is being undertaken to establish if using SPARC 

improves care (impact on quality of life, 

interventions, consultations, and referrals within 

supportive and palliative care), and whether the 

experience is different between groups of patients. 

Method(s): The study is being carried out within inpatients, 

out-patients, day care and in community 

settings, and is being developed, piloted, evaluated, 

reported and implemented in accordance with the 

Medical Research Council framework for developing 

and evaluating complex interventions. 

Patients will be randomised to receive SPARC at 

baseline or after a period of two weeks (waiting list 

control). Care continues as normal; SPARC responses 

are communicated to the care team to ensure needs 

identified are addressed. Participants will be asked to 

complete three short research questionnaires as part 

of the study, repeated after 2 weeks, 4 weeks and 6 

weeks. A small group of participants will be invited to 

take part in interviews. 

Results: This feasibility study is exploring 

recruitment, data quality and effect-size. Interim 

results will be presented at the conference. We will 

also present methodological issues arising. 

Conclusion(s): Data generated from this feasibility 

study will guide the development of a further, larger 

definitive multicentre study. This trial is the first step 

in a process that would define the clinical utility of 

SPARC. 

Macmillan Cancer Support 



A Randomised Comparative Trial of 

Recruitment Approach in a Population-based 

Post-bereavement Survey Using the VOICES-SF 

Questionnaire 

Hunt K. 1 , Addington-Hall J. 1 , Shlomo N. 2 , Cancer, 

Palliative and End of Life Care Research Group 


Sciences, Southampton, United Kingdom, 2 University 

of Southampton, Southampton Statistical Sciences 

Research Institute, Southampton, United Kingdom 

Aim: Population-based post-bereavement surveys 

have played an important role in palliative care 

research since the 1960s. They are the only way to 

collect data on a complete population who have died. 

Changes in data protection legislation have led to 

changes in contact methods, and to reductions in 

response rates. Response rates are particularly low in 

studies where respondents are asked to request a 

questionnaire, rather than being sent one to return if 

they wish. Research ethics committees differ in 

whether they consider the latter appropriate in 

bereavement. Response rates matter in 

epidemiological studies, where the purpose is to draw 

conclusions about the population from which the 

sample is drawn. This study therefore compares these 

two contact methods in terms of response rate, 

response bias and acceptability. 

Methods: The Office of National Statistics sampled 

1446 deaths between October 2009 and April 2010 in 

two areas in Southern England. The sample was 

stratified by place of death, cause of death and sex, 

and randomly assigned to two groups. At least six 

months after the death, the first group received the 

questionnaire with the initial letter of invitation 

(single posting group) and the second group were 

issued with a letter of invitation and a response slip to 

request the questionnaire (opt in group). Both groups 

were also given the option to complete the 

questionnaire online. Two reminders were sent. 

Results: Data collection finishes in November 2010. 

Full results will be presented at the conference. 

Conclusion: The 2008 Department of Health End of 

Life Strategy in England made the development and 

implementation of a national programme of surveys 

of bereaved relatives a key priority in relation to the 

development of quality and outcome measures. The 

trial findings have important implications for the 

design of these surveys. 

Funder: The Department of Health 



Survival Prediction for Terminally Ill Cancer 

Patients: Revision of Palliative Prognostic 

Score with Incorporation of Delirium 

Scarpi E. 1 , Nanni O. 1 , Maltoni M. 2 , Miceli R. 3 , Mariani L. 3 , 

Caraceni A. 4 , Amadori D. 5 

1 Istituto Scientifico Romagnolo per lo Studio e la Cura 

dei Tumori (I.R.S.T.), Biostatistics and Clinical Trials 

Unit, Meldola, Italy, 2 Forlimpopoli Hospital and 

Istituto Scientifico Romagnolo per lo Studio e la Cura 

dei Tumori (I.R.S.T.), Palliative Care Unit, 

Forlimpopoli, Italy, 3 Fondazione IRCCS Istituto 

Nazionale dei Tumori, INT, Unit of Clinical 

Epidemiology and Trial Organization, Milan, Italy, 


INT, Palliative Care Unit (Pain Therapy- 

Rehabilitation), Milan, Italy, 5 Istituto Scientifico 

Romagnolo per lo Studio e la Cura dei Tumori 

(I.R.S.T.), Department of Medical Oncology, Meldola, 

Italy 

Background: The validated Palliative Prognostic 

(PaP) score predicts survival in terminally-ill cancer 

patients and is calculated on the basis of dyspnea, 

anorexia, Karnofsky Performance Status, clinical 

prediction of survival, total white blood count and 

lymphocyte rate. Although the impact of delirium is 

well known, it was not included in the original PaP 

score. We aimed to incorporate information on 

delirium into this score and to evaluate the effect of 

this modification in a retrospective series of 361 


terminally-ill patients. 

Methods: The main endpoint was overall survival. 

We used the ‘validation by calibration’ approach 

proposed by van Houwelingen et al. and later adapted 

by Miceli et al. to obtain a score revision with 

inclusion of a new variable. A new model is fitted 

including the original score and the new variable as 

covariates; the model parameter estimates are then 

used to calculate the partial score for the new variable 

and the revised cutoffs to define the prognostic 

categories. 

Results: The prognostic contribution of delirium was 

confirmed as statistically significant (p< 0.001) and 

the variable was incorporated into the PaP score (D- 

PaP score) accordingly. With such a revision, 30-day 

survival in the three risk groups was 83%, 50% and 

9% vs 87%, 51% and 16% obtained using the original 

PaP score. PaP and D-PaP score classifications were in 

accordance in 292 patients (80.9%). Seventeen (4.7%) 

patients were switched to a group with a less favorable 

prognosis and 52 (14.4%) were switched to a more 

favorable prognostic group. The overall prognostic 

performance of the revised score was better than that 

obtained with the original one. 

Conclusions: The revision improved the 

performance of the original PaP score, at the same 

time maintaining its key feature as a simple tool for 

survival prediction in terminally-ill cancer patients. 

This study was funded by Istituto Oncologico 

Romagnolo. 




Collaborating with Users - A Successful 

Strategy to Involve ‘Hard to Reach’ Groups in 

Palliative Care Research 

Lund S. 1 

1 Royal Berkshire NHS Foundation Trust, Palliative 

Care, Berkshire, United Kingdom 

Aim: Hard to reach groups in research studies include 

minority communities and women; consequently 

this study aimed to provide a successful strategy to 

engage their involvement throughout the whole 

research process. 

Design and method: Asian women are an example 

of ‘silent users’ of palliative support so their 

collaboration and engagement was central to this 

research. This was achieved using an Asian link 

worker as co-researcher and an Asian women’s group, 

as a research advisory group, to identify potential 

participants and to culturally guide the research 

process and data interpretation. 

Results: The adopted strategies were successful in 

engaging Asian women, in achieving a rich sample 

and in gaining a culturally sensitive understanding to 

inform research design and data interpretation. In 

terms of the research process several implications 

were raised. Achieving culturally sensitive research 

requires an understanding that researcher control and 

formalised research processes are alien to many 

people. Methods therefore need to be carefully 

considered. For example, for a focus group to be 

culturally sensitive time needs to be given to 

socialising and hospitality. It is normal for 

participants to talk over each other and change 

direction, making recording interactions problematic 

for the unprepared. Similarly individual interviews 

may be interpreted differently to that anticipated for 

example a second person being present. Consent 

procedures may cause anxiety and a particular form of 

negotiated consent ensured that control and voice 

remain the participant’s. 

Conclusion: Accessing minority groups is facilitated 

by a co researcher with a language and culture shared 

with participants in the study when this is different to 

that of the main researcher.The use of the Asian 

women, as both an advisory and ‘user’ group in an 

area where specific user representatives is small, is 

innovative and an exemplar of best practice. 

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Introducing the Patient Experience Thematic 

Group: Marie Curie Centre for Palliative Care 

Research, at the Wales Cancer Trials Unit 

Nelson A. 1 , Fowell A. 2 , Noble S. 3 , Byrne A. 3 , Finlay I. 3 

1 Marie Curie Centre for Palliative Care Research, 

School of Medicine, Cardiff University, Cardiff, 

United Kingdom, 2 Betsi Cadwalader University 

Health Board, Dept Palliative Care, Caernarfon, 

United Kingdom, 3 Cardiff University, Cardiff, United 


Healthcare interventions are provided on the basis of 

clinical evidence arising from objective, scientific 

methods ranked for credibility; at the top of the scale 

is the randomised controlled trial, such evidence 

based practice may be reinforced by large scale 

population surveys to reach a consensus to confirm 

other evidence or to shape healthcare. However, the 

opinions and needs of the patient, change as their 

disease progresses, and new meanings are attached to 

illness and experience of care within the context of 

the individual’s life. A more appropriate assessment of 

what works best for the patient, is to explore their 

perceptions at the time of, or shortly after, the 

experience in question.With regard to clinical 

trials,within the Wales Cancer Trials Unit, we have 

developed a mixed methodological approach to 

patient experience in phase III studies, which has 

provided a unique dimension to cancer trials unit 

conduct. It has already altered the approach to trials 

development and identified patient preferences that 

will inform the work to follow. 

The thematic group also aims to explore aspects of 

patient decision making in relation to the complex 

interface between oncology and palliative care. 

Research is needed into the experiences of patients 

with (possibly unmet) palliative care needs who are 

managed in the oncology setting. Specifically, the 

information and options given to patients regarding 

treatments versus quality of life tradeoffs, and 

patients’ experiences of multiple and final treatments. 

This information may lead to new insights into the 

delivery of information about ongoing treatments 

and access to palliative and supportive care.Given the 

recent evidence that palliative care improves quality 

of life and less aggresscare extends survival times[1], 

research is essential to avoid inappropriate and 

unpleasant treatments where a more appropriate 

option exists. 

[1] Temel et al. N Engl J Med 2010;363:733-42. 



Methodological Challenges in Evaluating the 

Cost-effectiveness of Service Redesign to 

Improve End-of-Life Care in NHS Healthcare 

Systems 

Round J. 1 , Jones L. 1 , Drake R. 1 , Addicot R. 2 , Dewar S. 3 , 

Agelopoulos N. 3 


Care Research Unit, London, United Kingdom, 2 The 

King’s Fund, London, United Kingdom, 3 Marie Curie 

Cancer Care, London, United Kingdom 

Data from two primary care trusts (PCTs) in England 

have been used to estimate the impact of the 

Delivering Choice Programme (DCP) interventions 

on place of death and relative costs of care in two local 

health economies in England. The DCP aims to assist 

providers of care to develop local services to enable 

palliative care patients to be cared for in the place of 

their choosing. Experts in service redesign work with 

local providers and commissioners of care to redesign 

services to enable end-of-life patients to be cared for 

and die where they choose. Changes are implemented 

across local health economies, without local control 

groups. It is therefore difficult to assess the costeffectiveness 

of the DCP. A difference in difference 

(DinD) analysis approach has been adopted, whereby 

a non-DCP health economy with similar 

characteristics to the intervention group is used as a 

comparator. A DinD analysis provides a rigorous 

approximation to a randomised controlled trial (RCT) 

where an RCT is not feasible. It assumes that similar 

societal, economic and policy changes affect both 

sites, attributing any observed difference between 

outcomes to innovations at the test site. This study is 

unique in the use of DinD analysis of interventions 

aimed at patients at the end of life. Four outcome 

measures are used in the economic evaluation - total 

hospital admissions, hospital length of stay, total 

costs and place of death. Effects estimates are limited 

by small numbers accessing new services and 

selection bias in sample population and comparator 

sites. Preliminary analysis showed the PCT data to be 

of variable quality. Ensuring maximum cleaning of 

data is essential to confidence in findings. Further 

analysis is currently being undertaken on the clean 

data-set. Results will be important in establishing 

whether programmes such as the DCP can be costeffective 

in introducing interventions that allow 

patients to spend the last period of their life in a place 

of their choosing. 



The Evolving Profession of Palliative Care 

Research Nurses Conducting Oncological 

Palliative Medicine Trials 

de Wolf-Linder S. 1 , Strasser F. 1 



Background: Conducting clinical research with 

advanced cancer patients demands concurrent 

adherence to principles of Good Clinical Practice 

(GCP) and delivering best palliative care at all times. 

There exists no network of palliative care research 

nurses where the substance of a fluctuating role 

between a palliative care nurse and a palliative 

medicine research nurse is embraced with the 

ultimate aim to improve patients care and experience 

throughout such a trial. 

Aim: 

- To set up a first research nurse meeting to address 

first topics articulated in aims: 

- To improve knowledge-sharing amongst palliative 

care research nurses 

- To discover the requirements and needs of 

developing guidelines which would lead to new 

standards in accordance with providing best 

palliative care and GCP. 

- To identify opportunities for professional 

development amongst palliative care research 

nurses. 

Method: Palliative care research nurses from 

Research centres in Europe will be invited to meet at 

the EAPC Congress in 2011 in Lisbon. Formal 

invitations with enclosed latest evidence will be sent 

out 4month before the congress, including 

confirmation and reminders. The adresses will be 

collected through the EAPC-RN and trial registry. 

The following topics will be addressed in the first 

meeting: 

- Clarification of expectations of the network group - 

constitution of the core group 

- Identification of challenges in the daily work 

planning and conducting clinical trials 

- Identification of burning issues 

- Mapping out future strategies - meetings - topics 

Expected results: It is expected that a network of 

palliative care research nurses involved in clinical trials 

may strenghten the succesful implementation and 

conductance of clinical trials. The specific challenges 

performing research with advanced, incurable cancer 

patients include issues about assessments and 

methods, regarding the caring perspective, and also 

the dual role of researcher and carer. 



How Research and Palliative Care Practice 

Can Successfully Interact: An Example from a 

Project to Develop Quality Indicators 

Leemans K. 1 , Let D. 2 , Cohen J. 1 , Paul V.B. 2 , Deliens L. 1,3 , 

Research Group End-of-Life Care Ghent University & Vrije 

Universiteit Brussel 

1 Vrije Universiteit Brussel, Brussels, Belgium, 

2 Federation of Palliative Care Flanders, Wemmel, 

Belgium, 3 VU University Medical Center, EMGO 

Institute for Health and Care Research, Amsterdam, 

Netherlands 

Aims: With the growth of palliative care, the need to 

improve care also grows and policy increasingly 

demands guidelines for quality improvement. In this 

context the End-of-Life Care Research Group (Ghent 

University & Vrije Universiteit Brussel) started to 

develop a set of quality indicators in order to 

safeguard and monitor the quality of end-of-life care. 

To be applicable and feasible, the construction of the 

set asks for an early interaction between practice and 

research. This presentation illustrates how 

collaboration between practice and research can 

successfully be set out for such a research project. 

Method and results of the collaboration: Since 

the start of the project, an interaction between the 

research group and the Federation of Palliative Care 

Flanders, the representative organization of palliative 

care in Flanders, was set out for each phase in the 

development of the indicators. First, both discussed 

the study design. Second, the experiences from the 

practice delivered through the Federation were 

important to choose the domains for the indicator set. 

Third, both discussed the outline and content of the 

expert panels. Finally, the Federation will assist in the 

operationalization of the indicator set and engage 

several institutions through the palliative networks to 

use and test the set to measure quality of palliative 

care in Flanders. 

Conclusion: The development of quality indicators 

for palliative care cannot be made by researchers in 

isolation without a close collaboration with the 

clinical practice in palliative care. It is clear that a twoway 

interaction between research and practice creates 

a profitable situation for both parties, advancing the 

research process and creating contact between 

research and the basis of palliative care in Flanders. 

Collaboration between practice and research can 

ensure that the final instrument is not only strongly 

evidence based but will be more readily accepted by 

field workers. 



Review of the Pharmacokinetic Profile of Two 

Novel Fentanyl Transmucosal Formulations: 

Fentanyl Buccal Tablet (FBT) and Intranasal 

Fentanyl Spray (INFS) 

Darwish M. 1 , Moore N. 2 

1 Cephalon Inc, Frazer, PA, United States, 2 University 

of Bordeaux, Centre of Cliniczl Investigation, 

Bordeaux, France 

Breakthrough pain (BTP), a transient exacerbation of 

pain in patients with chronic pain receiving longterm 

opioid therapy, is a common event. BTP 

episodes can vary among individuals, with onset of 

pain ranging from a few minutes to ≥30 minutes and 

duration of pain ranging from several minutes up to 2 

hours. The onset of analgesia with traditional shortacting 

opioids (approx 30-45 minutes) may be 

inadequate for many patients suffering from 

breakthrough pain. Recent advances in drug delivery 

technology have allowed for development of novel 

formulations of fentanyl that have PK profiles more 

consistent with the time course of BTP episodes &, as a 

result, these therapeutics may be more appropriate for 

the treatment of patients with BTP receiving longterm 

opioid therapy. 2 formulations which have been 

developed for the treatment of BTP are FBT (fentanyl 

buccal tablet) & INFS (intranasal fentanyl spray). Both 

are approved for treatment in patients with cancerrelated 

BTP who are receiving long-term opioid 

therapy. In separate studies, both formulations are 

highly bioavailable, reach maximum or near 

maximum concentration rapidly, & exhibit a decline 

from peak concentration that is characteristic of 

fentanyl. These shared pharmacokinetic 

characteristics result in mean drug exposure profiles 

that mimic an average BTP episode. In clinical studies, 

these formulations have also shown onset of pain 

relief within 5-15 minutes & duration of relief up to 2 

hours. There are pharmacokinetic features which 

differentiate the formulations from one another. 

Given the substantial variability of BTP experienced 

by each patient, these pharmacokinetic differences 

may provide useful information for physicians. No 

studies have been performed to directly compare the 

pharmacokinetics of these novel formulations of 

fentanyl. This review will describe the known 

pharmacokinetic profiles of FBT & INFS, from separate 

studies, to show the key differentiating characteristics 

of each medication. 



Advancing End of Life Research Methodology 

through the Formation of a Thematic Group 

Fowell A. 1 , Nelson A. 2 , Byrne A. 2 , Noble S. 2 , Johnstone R. 1 , 

Finlay I. 3 , Marie Curie Centre for Palliative Care Research 

1 Betsi Cadwalader University Health Board, Dept 

Palliative Care, Caernarfon, United Kingdom, 2 Wales 

Cancer Trials Unit, Cardiff, United Kingdom, 3 Cardiff 

University, Cardiff, United Kingdom 

A common theme in palliative care research and 

especially at the end of life, is the difficulties 


experienced in producing good quality results that 

have a beneficial effect on patient care. Though many 

guidelines exist to guide health care practitioners in 

care for people at the end of life, there is a paucity of 

good evidence on which to base this guidance. 

However, there is recognition of the need to do good 

studies in this difficult area, and there is enthusiasm 

from patients to take part. 

A research thematic group on end of life research 

methodology has been formed, within an established 

cancer trials unit, of experts in conducting research in 

difficult areas, health economists, research ethicists, 

and has already identified the areas that need 

clarification to enable quality studies to progress. 

Work has started on overcoming the consent and 

ethical barriers and as the group develops will produce 

guidance on suitable methodology and outcome 

measures. 

As well as developing the groups own research 

protocols, the group is open to reviewing and giving 

advice on protocols from other groups and looks to 

develop sustainable collaboration with interested 

parties. 



Knowledge Synthesis for Supportive and 

Palliative Care Professionals: 7 Years’ 

Experience from the National Health Service 

in UK 

Stevens R.J. 1 , Brady D. 2 , Hodson M. 3 , Boland J. 1 , 

Ahmedzai S.H. 1 


Care, Sheffield, United Kingdom, 2 St Christopher’s 

Hospice, Library, London, United Kingdom, 3 Help the 

Hospices, Hospice Information, London, United 


Background: The UK´s NHS runs an online 

collection of clinical literature and other resources 

called NHS Evidence. One of the themes is the 

Specialist Collection for Supportive and Palliative 

Care. 

Aims: To review the work on knowledge synthesis for 

supportive and palliative care professionals, 

conducted from 2004 to the present. Specific 

objectives were: to provide a history of the project’s 

achievements, limitations and milestones; to produce 

an analysis of the results of the Annual Evidence 

Updates published, together with reflection on 

methods used; and to identify lessons which could 

assist future knowledge synthesis for professionals in 

this field. 

Methods: 

1) Analysis of archive documents, project notes, 

online resources, emails and discussions with staff, to 

produce a summary history including a detailed 

timeline. 

2) Produce a review of the results of the 14 Annual 

Evidence Updates in supportive and palliative care 

which were conducted, detailing document types, 

country of origin and topics of all included resources . 

Results: This online portal has aimed to be a gateway 

to the best current evidence in supportive and 

palliative care since 2004. Its editorial team worked 

with experts and organisations to develop the first 

comprehensive taxonomy of the field and produced 

an online collection of quality-assessed materials 

accessible to professionals. Abstracts were regularly 

published at national and international conferences. 

The email discussion forum has 360 subscribers. 

Monthly summaries go to national and international 

organisations. There have been evidence updates each 

year on 4 themes: Pain; Patient and carer involvement 

in chronic disease; Gastrointestinal symptoms; 

Chronic lung disease. The evidence is appraised by a 

volunteer team of expert clinical reviewers. 

Conclusion: The specialist collection has 

demonstrated over the past 7 years the role for an 

online ‘evidence community’ in supportive and 




Is it Trade-off of Length of Stay and Medical 

Rehabilitation Needs in Palliative Care Unit? 

Abe P.K. 1 

1 Chiba Prefectural University of Health Sciences, 

Rehabilitation, Chiba, Japan 

Purpose: We have been six years experience of 

rehabilitation interventions in a palliative care unit 

(PCU) in an institute. In this period, 275 patients 

admitted, and 140 in-patients introduced medical 

rehabilitation. Then we have found out a relationship 

between length of stay (LOS) and meducal 

rehabilitation needs of the in-patient. 

Method and Subjective: Retrospective study from 

medical record of the patients who joined medical 

rehabilitation from April 2003 to March 2008. Then 

we analysed the data statistically by JUMP8 in 

Japanese version. Total subjective were 275 inpatients, 

and 140 introduced medical rehabilitation. 

Result: Total admission of the PCU increased 184% 

by first year bases. But medical rehabilitation 

decreased 23% by first year bases. There are 140 inpatients 

totally at the time, average were 23.3(SD: 

32.3). Therefore we could find out a trade-off 

relationship between numbers of rehabilitation 

patient and lengths of stay. 

Discussion: Now we have two assumptions. One is 

longer LOS means more possibility for the patient 

who was taken into rehabilitation intervention, who 

still have physical and psychological activity because 

of longer prognosis. On the contrary, good symptom 

control made longer time for home staying. Another 

is shorter LOS means the-end-of-life care oriented in 

PCU. It means that patient have little possibility of 

some activity. If so, shorter LOS we have, then we 

have more short needs of medical rehabilitation with 

in-patients at terminal stage of the illness in very short 

time spend in PCU. 

Conclusion: Longer LOS could have more possibility 

of rehabilitation intervention at PCU. On the 

contrary, Shorter LOS could mean less needs of 

rehabilitation of the in-patient at PCU. At this time, 

we subject only one institute. Although we should 

correct more data because we take them from only 

one institute which means limitation of our study. 

But this is a first data in this field of medical 

rehabilitation at PCU in Japan. 



User Involvement: Enhancing Research 

Design 

Turner M. 1 , Payne S. 1 , Froggatt K. 1 

1 Lancaster University, School of Health and Medicine, 


Aims: This paper aims to share learning from 

bringing a range of stakeholders (service providers) 

and older people together in order to develop a high 

quality research proposal to be submitted for open 

competition, peer-reviewed funding. 

Methods: Researchers at Lancaster University UK 

were commissioned by a local Primary Care Trust 

(PCT) to develop a research proposal focused on the 

transfer of information between care settings when 

older people resident in care homes are admitted 

unexpectedly to hospital and then subsequently 

discharged back to the care home. In order to develop 

the proposal a half-day workshop was held, to which 

key individuals were invited. The workshop consisted 

of a short introduction followed by two facilitated 

group discussion sessions. Feedback from each group 

discussion was shared with the other participants. 

Results: Eighteen people participated in the 

workshop; they included care home and hospital 

managers, commissioners, educators, researchers and 

service users. The workshop generated discussion 

about how information is currently transferred 

between care settings, and the barriers to effective 

transfer of information. Participants shared examples 

of documents currently in use. Suggestions were also 

made about how to focus the research. Some of the 

workshop participants continued to work on the 

proposal over the following months. The proposal 

was submitted to the funding body and an outcome is 

awaited. 

Conclusion: The process of fostering collaboration 

between different service providers (care homes, 

hospitals, primary care) and service users had many 

positive effects, including engaging service users and 

clinicians in the research process and linking 

researchers into practice. This workshop model - 

consisting of careful planning, balancing numbers 

and types of stakeholders, providing pre-workshop 

documents, identifying specific questions and 

facilitating discussions - can be used to develop high 

quality research proposals. 




Cancer Fatigue: Does Forearm Muscle Mass and 

Handgrip Correlate with Fatigue Severity? 

Davis M. 1 , Seyidova-Khoshknabi D. 2 , Kirkova J. 2 , Walsh 

D. 2 

1 The Harry R. Horvitz Center for Palliative Medicine, 

Department of Solid Tumor Oncology, Taussig 

Cancer Center,The Cleveland Clinic, Cleveland, OH, 

United States, 2 Cleveland Clinic, Cleveland, OH, 

United States 

Introduction: A “catastrophe” fatigue theory has 

muscle exhaustion and ATP depletion as the main 

mechanism which would correlate with muscle mass 

and composition. It is also hypothesized that a brain 

“central governor” controls muscle activity and that 

the human body functions as a complex system 

during exercise until a central brake prevents loss of 

homeostasis. A “central governor” fatigue theory 

places the fatigue mechanism in the subconscious 

brain which ensures homeostasis and protects muscle 

from damage. The governor “set point” may be 

altered by illness. Bioelectrical impedance (BIA) 

estimates of muscle mass are validated against MRI 

measured muscle mass. The main electron conductor 

with BIA is muscle. Muscle mass is inversely related to 

impedance (Z) and directly related to the muscle area 

(L 2 ).We hypothesized that the relationship between 

maximum handgrip strength, segmental forearm 

muscle mass (L 2 /Z) and fatigue is altered in cancerrelated 

fatigue (CRF) if fatigue is central in origin. 

Method: 20 individuals, 10 healthy controls and 10 

with CRF were studied. Data collected was: BFI, 

handgrip x 4 (dominant arm), and forearm BIA 

impedance. 

Results: The median total BFI score was 18 for 

controls and 45 for CRF. In those with CRF relative to 

healthy controls there was a poor correlation between 

BFI and forearm muscle mass, between handgrip 

strength and BFI, and handgrip strength and muscle 

mass (Figures, red, healthy controls; blue, CRF). 

Discussion: This pilot study demonstrated in those 

with CRF a poor correlation between handgrip 

strength, forearm muscle mass and fatigue severity 

which differed from healthy controls. This suggests 

that the “central governor” which controls muscle 

activation is altered in CRF and that fatigue is unlikely 

to be arising from reduced muscle mass (peripheral 

fatigue). 

Conclusion: Fatigue severity in CRF is unrelated to 

muscle mass and handgrip strength. 




Symptoms Predicting Survival in Patients 

with Advanced Cancer: A Systematic Review 

Trajkovic-Vidakovic M. 1 , de Graeff A. 1 , Westers P. 2 , Voest 

E.E. 1 , Teunissen S.C.C.M. 1 

1 University Medical Centre Utrecht, Department of 

Medical Oncology, Utrecht, Netherlands, 2 University 

Medical Centre Utrecht, Division Julius Centrum, 


Aim: To systematically review the literature regarding 

symptoms predicting survival in patients with 


Design: Medline, Embase, Cochrane and Cinahl 

databases were systematically explored from 1966 to 

January 2010 to identify all English or Dutch language 

articles analyzing associations between potential 

prognostic symptoms and actual survival time. The 

articles were reviewed for inclusion criteria and 

relevant data were extracted by two independent 

researchers. The predicting symptoms were also 

evaluated in the three stages of palliative care: diseasedirected 

palliation, symptom-oriented palliation and 

palliation in the terminal stage. The quality of 

reporting of studies was critically appraised according 

to the Strengthening the Reporting of Observational 

Studies in Epidemiology (STROBE) statement. 

Results: The search identified 2198 published papers. 

Thirty-two papers satisfied all criteria and were finally 

included. Univariate analysis revealed confusion, 

anorexia, fatigue, drowsiness, cognitive impairment, 

cachexia, dyspnea and weight loss as factors 

associated with survival in >65% of the articles 

evaluating these symptoms. This corresponds mostly 

with data from patients in the stage of symptomoriented 

palliation. Amongst patients in the stage of 

disease-directed palliation, symptoms associated with 

survival are very diffuse. Data from palliation in 

terminal stage are scarce. Sub-items of criteria 

“variables” and “statistical methods” of the STROBE 

249 


(Friday)


(Friday) 


statement are seriously underreported. At a total of 34 

STROBE items, papers published before the STROBE 

initiative reported on average 22 items and papers 

published after the initiative 25 items. 

Conclusion: Several symptoms are prognostic 

factors in patients with advanced cancer. For each of 

the three palliative stages dissimilar symptoms are 

significant. Published papers however lack in 

reporting the research. 

The author(s) indicate no potential conflicts of 

interest. 



Predictive Signs and Symptoms in Patients 

with Advanced Cancer 

Hesselmann G.M. 1 , Hooijdonk C. 2 , Nijs de E. 1 , Trajkovic- 

Vidakovic M. 2 , Graeff de A. 2 , Teunissen S. 1 , Vrehen H. 1 

1 UMC Utrecht, Utrecht Palliative Care Center / 

F02.126, Utrecht, Netherlands, 2 UMC Utrecht, 

Medical Oncology / F02.126, Utrecht, Netherlands 

Aim: Health care professionals do not always 

recognize the predictive value of signs and symptoms. 

Therefore patients may lack adjustment of care. The 

aim of this study is to analyze which signs or 

symptoms are related with survival in patients with 


Design: A retrospective cohort research was 

performed over a period of 18 months, July 2008 - 

December 2009, from the regional Palliative care 

Consultation Team Middle Netherlands(PTMN). This 

is a consultation service for healthcare professionals. 

Signs and symptoms are reported as dichotomous 

variables by the consulting professionals and are 

registered. This database is originated on a national 

registration computerized system and includes the 

estimation of life expectancy. Information on date of 

death is mostly obtained through the consulting 

professionals and the hospital administration system. 

Results: Preliminary results based on a time period of 

13 months (N= 348) show a population which 

consists of 55.2% male patients, a median age of 67.0 

year and mainly patients in a homecare setting 85.5%. 

In this study most patients had gastro-intestinal 

cancer 29.02%, lung cancer 25.57% or hematological 

cancer 12.64%. Median survival was 4.9 days. 

Estimated life expectancy was mostly too 

optimistic(p< 0.001). Significant signs and symptoms 

predicting survival are: reduced oral intake (p< 0.001), 

dysphagia (p< 0.001), dyspnea(p< 0.001), 

drowsiness(p< 0.001), agitation(p< 0.001), 

confusion(p=0.013) and ascites(p=0.008). Final 

analysis of the 18 months period will be presented. 

Conclusion: Most symptoms are in accordance with 

international literature concerning predictive 

symptoms in advanced cancer. Reduced oral intake 

and ascites, which are less obvious, are also significant. 

In addition this study shows a gap between the 

estimated life expectancy by the consulting 

professional and actual survival of the patients. 

The author(s) indicate no potential conflicts of 

interest. 



Spirituality: An Expression of Inner Strength 

and Meaning of Life in Patients with 

Advanced Cancer (ACAP) and their Caregivers 

in the Palliative Care Setting 

Delgado Guay M. 1 , Parsons H.A. 2 , Hui D. 2 , De la Cruz 

M. 1 , Govan K.B. 2 , Thorney S. 2 , Bruera E. 2 

1 The University of Texas Medical School at Houston, 

Geriatrics and Palliative Medicine, Houston, TX, 

United States, 2 MD Anderson Cancer Center, 

Rehabilitiation and Palliative Care, Houston, TX, 

United States 

Background: The way that individuals seek and 

express meaning and purpose and connectedness to 

the moment, to self, to others, to nature, and to the 

significant or sacred defines the human aspect of 

spirituality. People who face life-threatening illness 

might experience an unbalance in this connectedness 

in relationships. 

Purpose: To describe the domain involved in the 

expression of Meaning of life, Inner Strength in ACAP 

and their caregivers in the palliative care setting. 

Methods: We prospectively interviewed 42 ACAPcaregivers 

dyads in our palliative care outpatient clinic 

to assess their Meaning of life/Inner Strength. We 

analyzed the data using a qualitative focus on the 

nature of the dyad’s meaning of life/Inner Strength. 

Results: The ACAP’s median age (range) was 53y (21- 

85), 61% female, and the caregivers’ median age 

(range) was 52y (21-83), 67% female. 74% were white, 

18% African American, and 4% Hispanic. 88% were 

Christians, 4% Jewish and 4% Agnostic. All 

participants considered themselves spiritual and 

religious persons. And considered that spirituality was 

a source of strength and comfort to cope with their 

distress. ACAP expressed their inner strength/meaning 

of life in terms of the Divine [through praying, hope, 

faith, communication with God] in 76%; in terms of 

their own Value as human beings in 17%, and in terms 

of the Relationships the others (family members, 

friends, and partners) in 7%. Caregivers expressed their 

inner strength and meaning of life in terms of their 

relationship with the Divine in 62%, in terms of their 

own Value as a person in 10%, and in terms of their 

Relationships with family members, friends, and 

nature and music in 26%. 

Conclusion: Significant number of ACAP and their 

caregivers consider themselves spiritual persons. The 

nature of spirituality in terms of persons’ Inner 

strength and meaning of life is multidimensional as 

evidenced of the different domains expressed for 

these dyads. Further research is needed. 



The Presence and Severity of Side Effects of 

Strong Opioids 

Isherwood R.J. 1,2 , Allan G. 2 , Joshi M. 3 , Colvin L. 3,4 , Fallon 

M. 4,5 









Research aims: The study assesses the prevalence 

and severity of side effects of strong opioids and 

features suggestive of opioid-induced hyperalgesia. 

Patients are recruited who have a history of cancer or 

non-cancer pain or substance misuse. 

Study design and methods: This is a prospective 

observational study. Initial results are presented. The 

frequency of the side effects associated with strong 

opioids (dry mouth, myoclonus, hallucinations, 

nausea and vomiting) has been recorded using a 0 to 4 

Likert scale. Constipation has been assessed using a 

validated score. Semi-structured interviews with 

patients who have previously been opioid toxic were 

also carried out. 

Results: 50 patients who are prescribed strong 

opioids for cancer and non-cancer pain have been 

included. 54% are female, median age is 54.7 years. 

Dry mouth is the symptom most commonly reported 

in isolation. The majority of patients reported 2 or 

more symptoms using the Likert scales. 28% of 

patients had 2 or more symptoms present quite often 

or very often over the previous week. 34% had a score 

of 3 or less indicating constipation. 36% were 

prescribed morphine, 36% were prescribed 

oxycodone and 16% were prescribed transdermal 

fentanyl. 18% had had dose titration in the previous 7 

days. 20% were on a low (60mg or less) morphine 

equivalent daily dose (MEDD) and 26% were on a 

high MEDD (300mg or more). Detailed statistics 

exploring possible association between symptom 

burden and morphine equivalent daily dose, recent 

titration, duration of opioid prescription and/or 

opioid prescribed will be presented. Themes and 

quotes from the interviews will be presented. 

Conclusions: The side effects of the strong opioids 

cause a significant symptom burden. This is 

demonstrated by both the quantitative and 

qualitative data obtained. The patients’ descriptions 

of having been opioid toxic provide an illustration of 

the impact the episode has had on them. 



Thromboprophylaxis in Palliative Care 

Patients with Cancer: A Multicenter 

Prospective, Cross-sectional Analysis of 

Current Practice in Palliative Care Units 

Gartner V. 1 , Kierner K.K. 1 , Namjesky A. 2 , Kum-Taucher 

B. 3 , Henry A. 4 , Stabel C. 5 , Hammerl-Ferrari B. 6 , Watzke 

H. 1 , Austrian Palliative Care Study Group (AUPACS) 

1 Medical University of Vienna, Palliative Care, 

Vienna, Austria, 2 KH Waidhofen, Waidhofen, Austria, 

3 KH Scheibbs, Scheibbs, Austria, 4 Hopsiz Rennweg, 

Vienna, Austria, 5 KH Göttlicher Heiland, Vienna, 

Austria, 6 KH Hietzing, Vienna, Austria 

Background: Prospectively collected data on use of 

thromboprophylaxis in palliative care patients are not 

available. 

Methods: We monitored use, indication and 

contraindications to thromboprophylaxis in 134 

patients hospitalized in 21 palliative care units in 

Austria in a prospective, cross-sectional study. 

Results: Cancer was present in 86 % of patients. 

Forty-seven percent of patients were on low molecular 

weight heparin on the day of the study for primary or 

secondary thromboembolism. Thromboprophylaxis 

had been withdrawn in 18% of patients upon 

admission. Use of thromboprophylaxis was similar in 

cancer patients and in non-cancer patients (49% vs. 

42%). 

Contraindications for thromboprophylaxis were 

present in 27 % of all patients. Patients with 

contraindications were significantly more prevalent 

in the group without thromboprophylaxis compared 

to the prophylaxis group (34% vs.19 %; p< 0.05). 

Significantly more bedridden cancer patients had 

contraindication for thromboprophylaxis when 

compared with mobile cancer patients (35% vs. 14%; 

p=0.01). Low performance status was by far the most 

frequent contraindication among these patients 

(89%). Twenty-nine percent of all bedridden cancer 

patients did not receive prophylaxis despite an 

established indication and absence of 

contraindications. Eighty-seven percent of patients 

who had been involved in decision making opted for 

getting prophylaxis. 

Conclusions: Our data reveal that 

thromboprophylaxis in palliative care units is used 

only in about half of all patients with advanced 

cancer who have a clear indication for it according to 

established guidelines. This apparent deviation from 

guidelines can be partly explained by a high 

prevalence of contraindications for 

thromboprophylaxis in these patients. 



Breathlessness in Patients with Advanced 

Disease: Do Caregiver Ratings Agree with 

Patient Ratings? 




Background: Breathlessness is a common, 

distressing symptom in patients with advanced 

disease, but can also affect their carers. Carers are 

crucial in patient support, helping manage 

breathlessness and being proxies for patient views. 

However, little is known about how carer 

breathlessness ratings agree with patient ratings. 

Aim: To assess agreement between patient and 

caregiver ratings of breathlessness. 

Methods: A cross-sectional survey of caregivers and 

the patients they care for. Breathlessness measures 

include the Borg scale and POS. Participants were 

recruited from two hospitals in South London. 

Inclusion criteria: patients with breathlessness and 

their nominated caregivers. Recruitment took 

eighteen months. Intra-class co-efficient (ICC), 

weighted kappa’s and standardized differences were 

used to estimate agreement between breathlessness 

ratings. 

Results: 51 HF and 50 LC carers were recruited (93 

patient/ caregiver dyads). Most carers were spouses 

(72%), female (80%) and lived with the patient (80%). 

Severity of patient breathlessness was reported as 

‘moderate’ in both carer groups. Carer breathlessness 

ratings showed moderate levels of agreement with 

patients’ ratings on POS (weighted kappa statistic: 0.5 

in HF, 0.6 in LC dyads) and the Borg (ICC=0.49 in HF 

dyads (95% CI 0.24-0.68) and 0.53 (95% CI 0.28-0.71) 

in LC dyads. 

LC carers tended to overestimate breathlessness 


compared to patients (standardized difference d=0.5). 

HF carers showed no trend towards bias in their ratings. 

Conclusions: Carers were able to provide reasonable 

proxy assessments of breathlessness, although health 

professionals need to be aware of LC carers’ potential 

for over-estimation of breathlessness (compared to 

patient ratings). Caregiver education on symptom 

assessment and management may improve 

agreement in symptom ratings as well as improving 

the caregiver experience. 



Assessment of Self-efficacy, Anxiety, 

Symptoms Distress, and Quality of Life in 

Cancer Patients Treated with Radiotherapy 

Mystakidou K. 1 , Tsilika E. 1 , Parpa E. 1 , Gogou P. 2 , 

Panagiotou I. 1 , Vassiliou I. 3 , Gouliamos A. 2 

1 Pain Relief & Palliative Care Unit, Areteion Hospital, 

School of Medicine, University of Athens, Radiology, 

Athens, Greece, 2 Areteion Hospital, School of 

Medicine, University of Athens, Radiology, Athens, 

Greece, 3 Areteion Hospital, School of Medicine, 

University of Athens, Surgery, Athens, Greece 

Research aims: Cancer treatments aim to cure, 

prolong and maintain quality of life. The present 

study evaluates prospectively disease and treatment 

related symptoms, self-efficacy, anxiety and quality of 

life (QoL), in patients with different types of cancer 

undergoing external beam radiotherapy (RT) and 

examines the relationship of patients’ self-efficacy 

with the assessed measures, at the baseline and at the 

end of the treatment. 

Study design & methods: The sample consisted of 

90 cancer patients. Self-efficacy was assessed using the 

General Perceived Self-Efficacy (GSE), QoL was 

evaluated using the LASA questionnaire, anxiety was 

measured with the Anxiety subscale of the Hospital 

Anxiety and Depression (HAD) scale, while symptoms 

were assessed using the MD Anderson Symptom 

Inventory (MDASI). 

Results: At post-treatment, self-efficacy was reduced 

(28.86±6.42), anxiety scores were elevated 

(9.56±4.42), QoL scores were reduced (6.74±1.81) and 

symptoms distress were deteriorated (3.24±2.62). At 

post-treatment, self-efficacy was related with gender 

(p=0.015) and education (p=0.002). Also there were 

significant correlations between self-efficacy anxiety 

(r=-0535, p< 0.0005), quality of life (r=0.253, 

p=0.017), and symptoms (r=-0.234, p=0.028). 

Conclusion: Patient-related and disease-related 

factors may help healthcare workers to identify 

patients at risk for somatic and psychosocial problems 

after treatment and to plan appropriate interventions. 



How Does a Breathless Management 

Programme Help Patients with Inrtathoracic 

Malignancy? A Qualitative Study 

Peel T. 1 , Wood H. 2 , Connors S. 1 , Dogan S. 2 

1 North Tyneside General Hospital, Palliative 

Medicine, Tyne & Wear, United Kingdom, 2 North 

Tyneside General Hospital, Clinical Psychology, Tyne 

& Wear, United Kingdom 

Introduction: In a qualitative study, analysed by 

interpretative phenomenological analysis (IPA), we 

report the outcomes of a non pharmacological, 

physiotherapist led, breathlessness management 

programme in a group of 9 patients with intrathoracic 

malignancy (lung cancer or malignant pleural 

mesothelioma). 

Methods: Consecutive patients completing the 

programme were invited to be interviewed (semistructured, 

taped) by the researcher. The interviews 

were transcribed and analysed by IPA. Interviews were 

continued until a saturation of themes was observed. 

Results: 

9 patients were interviewed 

6 major themes of the effects of the programme 

emerged, they are: 

1) The experience of the programme 

Accepting a need for help, the hope and uncertainty 

about benefit, the format and individualisation of the 

programme and the role of the patient in the process 

2) Changes in coping achieved 

This includes relaxation, breathing control, 

approaching activities, pacing, action when 

breathless and the benefit of a fan 

3) The role of the physiotherapist 

Hands on, talking, feeling, caring, personal approach 

4) Difficulties encountered 

Problems with techniques in certain circumstances, 

difficulty changing habits, not using all techniques, 

self blaming 

5) Global impact of the programme 

Help with adjustment and acceptance of condition in 

general and symptoms in particular. Regaining 

control and confidence, ability to complete tasks 

6) The future 

Thoughts and feelings about finishing the 

programme, the need for ongoing help, facing the 

uncertainties of the future. 

Conclusion: Non pharmacological breathlessness 

programmes offer a wide range of benefits to different 

people, who each may benefit from different elements 

of it. 



Transfusion in Palliative Cancer Patients. 

What Is the Value of PudMed? 

Uceda Torres M.E. 1 , Rodríguez Rodríguez J.N. 2 

1 U.G.C Molino de la Vega, Huelva, Spain, 2 Hospital 

Juan Ramon Jimenez, UGC Hematología, Huelva, 


Aims: Cancer is a very well known cause of disorders 

that eventually will need a transfusion as a part of the 

treatment. As transfusion is one of the most striking 

subjects palliative units must confront, in some cases, 

literature must be consulted as an aid to clarify some 

aspects that can help in the decision of transfuse and 

manage patients. We have performed a review of the 

literature compiled in PubMed database to know the 

amount and purpose of this available information. 

Methods: The period of investigation was from 1966 

to July 2010. Searching strategy to cover a maximum 

of articles was performed using the following 

combination of key words: “Transfusion” AND 

“Cancer” AND “Palliat*”. Exclusion criteria were: 

a) Not English language; 

b) Pathologies other than cancer; 

c) Transfusion as a part of active treatment with 

chemotherapy, radiotherapy or radioactive elements, 

surgical processes, endoscopic, embolization or laser 

therapy; 

d) Not palliative patients; and 

e) Others (radiology techniques, cancer evolution, 

and miscellanea). 

Purpose of the articles was divided (according to the 

main aspect studied) into: 

a) Clinical; 

b) Ethical; 

c) Organization; 

d) Mixed. 

Results: With the search proposed a total of 174 

articles were found. Only 23 articles (13,2%) were 

finally selected for the investigation of their purpose. 

Among these 23 selected articles: 12 (52,2%) regarded 

clinical subjects; 6 (26,1%) organization ones; 4 

(17,4%) ethical aspects; and 1 (4,3%) mixed aspects. 

Conclusion: The information compiled in PubMed 

regarding transfusion in palliative cancer patients is 

scarce. Most of the articles concern clinical aspects, 

specially focused on the improvement of symptoms 

with transfusion; no clinical guides have been 

published for this group of patients. Organizational 

aspects are considered as well, mainly the possibility 

of home transfusion and costs of the different 

interventions. Finally, some articles are focused to 

transfusion as an ethical dilemma. 



Living with Breathlessness - Experiences of 

Informal Carers of Patients with 

Breathlessness in Advanced Cancer or COPD 

Schildmann E.K. 1 , Gysels M. 2,3 , Booth S. 4 , Kühnbach R. 5 , 

Higginson I.J. 2 , Bausewein C. 2 

1 Helios Klinikum Berlin Buch, Dept. of Haemotology, 

Oncology and Tumour Immunology, Berlin, 

Germany, 2 King’s College London, Dept. of Palliative 

Care, Policy and Rehabilitation, Cicely Saunders 

Institute, London, United Kingdom, 3 Universitat de 


Research, Barcelona, Spain, 4 Addenbrooke´s Hospital, 

Palliative Care Team, Cambridge, United Kingdom, 

5 Munich University Hospital, Interdisciplinary Centre 


Background: Breathlessness is known to be a 

frequent symptom at the end of life which is 

distressing to witness. There is little research on its 


impact on informal carers and the experiences of 

carers of breathless patients. This is essential for 

planning adequate support for them. 

Aim: To describe the experiences of carers of 

breathless patients and explore the factors helping 

them to cope. 

Methods: Analysis of data which have been collected 

within a prospective longitudinal study. Breathless 

patients with advanced cancer or COPD stage III/IV 

and their carers were recruited from hospital and 

home care sites in Munich, Germany. At monthly 

intervals over six months or until the patient´s death, 

carers completed questionnaires with open questions. 

The free-text answers were analysed following central 

steps of “qualitative content analysis” as described by 

Mayring. 

Results: Answers from 55 carers (29 women, 26 men) 

were available (response rate 75%). Analysis indicates 

that carers had difficult experiences such as suffering 

with the patient, fear of the future, feeling burdened, 

helplessness and dealing with changes in the patient´s 

personality. However, positive experiences including 

deepening of relationships were also described. 

Important resources that helped the carers to cope 

were social support and keeping up own interests. 

Most carers did not wish additional support. Those 

who did mentioned help with housekeeping, 

information, home nursing care and financial support. 

Conclusions: Professionals should be aware of the 

suffering and helplessness, but also positive 

experiences of carers of breathless patients. They 

should aim to support carers to keep up own interests. 

The development of validated outcome measures 

incorporating positive aspects of caring, more 

longitudinal studies into the impact of caring for 

breathless patients and the evaluation of 

interventions to support carers are important areas for 

future research. 




Physical Symptom Burden at the End of Life 

in Different Places of Death in Germany 

Escobar Pinzon L.C. 1 , Zepf K.I. 1 , Claus M. 1 , Weber M. 2 

1 University Medical Center of the Johannes 

Gutenberg University of Mainz, Institute of 

Occupational, Social and Environmental Medicine, 

Mainz, Germany, 2 University Medical Center of the 

Johannes Gutenberg University of Mainz, 

Interdisciplinary Palliative Care Unit, Mainz, 

Germany 

Research aims: Information on physical symptom 

burden of terminally-ill patients in different care 

settings, independent of the type of disease, is scarce. 

The aim of the study was to assess the physical 

symptom burden, at the end of life in Germany. We 

further wanted to investigate differences in the 

perceived burden for various places of death. 

Study design and methods: The cross-sectional 

survey was based on a random sample of 5000 

inhabitants of Rhineland-Palatinate (Germany) that 

had died between 25 May and 24 August 2008. 

Relatives of these randomly drawn deceased persons 

were interviewed by means of a written survey. In 

bivariate analyses, we determined whether patients 

dying in different places had different patterns of 

physical symptom burden. 

Results: 3832 questionnaires were delivered and 

1378 completed, leading to a response rate of 36.0%. 

People suffered from severe weakness (85.2%), 

appetite loss (73.6%), tiredness (71.9%), dyspnea 

(40.3%), pain (40.2%), constipation (20.6%), nausea 

(18.2%), problems with wound/decubitus care 

(16.5%) and vomiting (11.8%). Pain and problems 

with wound/decubitus care were significantly 

associated with place of death. Pain, nausea, vomiting 

and dyspnea were most frequent in hospitals, 

constipation in palliative care units, and weakness, 

appetite loss, tiredness and problems with 

wound/decubitus care in nursing homes. 

Conclusions: Our investigation revealed evidence 

for a high physical symptom burden of the dying in 

different places of death. This finding holds for all 

kinds of diseases, not only for cancer patients. Our 

investigation reaffirms the demand that palliative 

care should not be restricted to the comparatively 

small group of cancer patients in specialized facilities, 

but should be available for all in- and outpatients at 


Acknowledgments: This study was financially 

supported by Fresenius Kabi Germany GmbH and the 

German Pharmaceutical Industry Association (BPI). 

251 


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Impact of Targeted Therapy on Quality of Life 

in Patients with Metastatic Renal Cell 

Carcinoma and ECOG PS ≥2 

Tsimafeyeu I. 1 

1 Kidney Cancer Research Bureau, Moscow, Russian 

Federation 

Research aims: The prognosis for metastatic renal 

cell carcinoma (RCC) has improved with the 

development of novel targeted agents. However, 

targeted agents are associated with a range of 

symptoms and treatment-related adverse events 

which contribute to the burden of disease. Aim of this 

study was to evaluate quality-of-life (QoL) in 

metastatic RCC patients (pts) with unfavorable 

performance status (PS ECOG ≥2) treated with the 

targeted agents. 

Design, methods and statistics: Pts with 

metastatic RCC and PS ECOG ≥2 were eligible. QoL 

was assessed by the European Organization for 

Research and Treatment of Cancer QoL questionnaire 

QLQ-C30 initially and at weeks 4, 8 and 12. 

Results: 77 pts (median age, 60 [48-70]; male, 73%; 

clear-cell RCC, 94%) were enrolled from 11 sites in 3 

countries and received sunitinib (75%), bevacizumab 

+ IFN (12%), sorafenib (11%), tivozanib (1%), or 

bevacizumab + temsirolimus (1%). Median duration 

of treatment was 13.6 weeks (range 5 - 16.4) with 

interruptions in 31% and dose reductions in 29%. 

Mean QoL (global-quality-of-health status) decreased 

significantly from 52 to 39 (p< 0.01) during the first 4 

weeks after treatment initiation, due to a mean 

reduction in physical (from 73 to 68, p< 0.01), role 

(from 47 to 31, p< 0.01), emotional (from 65 to 51, 

p=0.08), cognitive (from 69 to 42, p< 0.0001), and 

social function (from 48 to 25, p< 0.0001). During the 

course of the study, mean QoL did not improve at 

weeks 8 (40) and 12 (37) compared to week 4 (p=0.63 

and p=0.5). No significant difference in mean QoL 

could be seen between sunitinib and other agent 

groups (p=0.65). 

Conclusion: This trial demonstrates adversely 

influence of targeted agents on overall QoL, and 

negative impact on individual symptoms in pts with 

metastatic RCC and unfavorable performance status. 



Symptoms Prevalence in Palliative Care 

Patients: Multicenter Italian Study* 

Zucco F.M. 1 , Guardamagna V.A. 1,2 , Sardo V. 1 , Piovesan 

C. 1 , Moroni L. 2 





Research aims: Data collection on symptoms (ss) in 

Palliative Care patients (pts). 



Palliative Care Units), observational study. Data 

collection period/patient: 5 week/Hospice pts (max 

T5w in HO); 9 w/Home care pts (max T9w in HOCA) 

or until death (“Exi”). 

Results: Patients enrolled: 397 (52% m, 48% f; 90% 

>55 years-old; 98% cancer pts), 203 (51%) in HOCA, 

188 (47.3%) in HO and 6 in other assistance settings. 

At the end of study (maxT5w in HO and maxT9w in 

HOCA) died pts were 80% in HO and 71% in HOCA. 

More than 50% of patients referred ≥4 ss, with a 

higher complexity at the admission time in HO (T0). 

Fatigue was the more frequent symptom (s) in all pts 

subgroup at T0, both in HO and in HOCA (79% vs 

74%) vs with a progressive reduction Exi subgroup: 

T5w 65% in HO vs T9w 52% in HOCA. The second 

more frequent symptom in all pts at T0 was Anorexia 

(60% in HO vs 49% HOCA). Dyspnea (D) was 

recorded at T0 in 39% of all HO pts vs 44% in Exi, 

with a decreasing trend: T5w: 15% all vs 18% in Exi. 

In HOCA D was recorded in 22%, both in all pts and 

in Exi. At T9w in all HOCA pts D was 18% vs 30% in 

Exi. At T0 Anxiety was recorded in 25% in HO pts and 

40% in HOCA, with a progressive reduction only 

among HO. At T0 Constipation was present in 34%, 

both in all HO and Exi pts and in 41% in all HOCA 

pts, with a progressive decreasing in both HO and 

HOCA all pts (T5w in HO 23% T9w 25% in HOCA), 

except Exi HOCA (T9w 60%). Confusion was recorded 

in 31% in HO vs 23% in HOCA; Depression was less 

frequent in HO than in HOCA pts (20% vs 30%). 

Conclusion: A large number of accompanying ss are 

registered during palliative care assistance period, 

particularly in HO pts. The intervention of PCU seems 

to be effective for most, but not all, symptoms. 




400.000,00) 



The Use of Psychotropic Drugs in a Palliative 

Care Setting 

Ferrández O. 1 , Farriols C. 2 , Planas J. 2 , Ortiz P. 1 , Mojal S. 3 , 

Sarsanedas E. 4 , Dengra J. 5 , Riera M. 6 , Ruiz A.I. 7 

1 Parc de Salut Mar, Department of Hospital Pharmacy, 

Barcelona, Spain, 2 Parc de Salut Mar, Palliative Care 

Setting, Department of Medical Oncology, Barcelona, 

Spain, 3 Parc de Salut Mar, Department of Statistics, 

Barcelona, Spain, 4 Parc de Salut Mar, Department of 

Information Management, Barcelona, Spain, 5 Parc de 

Salut Mar, Department of Admissions, Barcelona, 

Spain, 6 Parc de Salut Mar, Palliative Care Setting, 

Barcelona, Spain, 7 Parc de Salut Mar, Department of 

Psychiatry, Barcelona, Spain 

Research aim: To analyze the evolution of 

psychotropic drug prescription (prevalence and 

profile) in a Palliative Care Setting (PCS) comparing 

three periods (2002, 2006 and 2009). 

Study design and methods: Cross-sectional 

observational study performed in a PCS. A psychiatric 

program was implemented in 2003. The study 

comprised three periods: 2002, 2006 and 2009. 

Analyzed psychotropic drugs were: benzodiazepines 

(BZD), antipsychotics (AP) and antidepressants (AD). 

Data collected were percentage and profile of 

psychotropic treatments prescribed in admitted 

patients. It was based in intention to treat analysis. 

Results: 840 admitted patients were analyzed. The 

percentage of patients with psychotropic treatment 

increased mainly from 2002 (82.2%) to 2009 (90.2%) 

(p =0.006). Mean number of psychotropic drugs per 

patient increased from 2002 (1.66) to 2006 (2.16) 

(p=0.003) and to 2009 (2.35) (p< 0.001). BZD: 72.6% 

of patients were prescribed in 2002, 76.6% in 2006 

(p=0.294), 84.0% in 2009 (p=0.001); lorazepam and 

midazolam were the most prescribed, and 

lormetazepam increased significantly. AP: 26.1% in 

2002, 37.2% in 2006 (p=0.007) and 40.0% in 2009 

(p=0.001); haloperidol and risperidone were the most 

prescribed. AD: 17.8% in 2002, 28.1% in 2006 

(p=0.006) and 27.1% in 2009 (p=0.010); mirtazapine, 

citalopram and escitalopram were the most prescribed 

and other new drugs prescription was significant 

(duloxetine). 

Conclusions: Psychotropic drug prescription 

increased and the profile changed. More specific 

alternatives with less adverse effects, adjuvant 

treatment of other symptoms and easier 

administration routes might have contributed to it. 

Further studies would be performed to analyze their 

effectiveness and correlation with other symptom 

relief. 



Prevalence of Constipation (C) in Cancer 

Patients (C-PAT) under Opioid Therapy: 

Survey in Argentina 

De Simone G. 1,2,3 , Grance G. 1,4 , Contreras N. 1 , Dos Santos 

Gomes S. 1 , Carrera C. 1 , Pereyra J. 1 , Pérez M. 1,2,3 

1 Asociación Pallium Latinoamérica, Buenos Aires, 

Argentina, 2 Universidad del Salvador, Buenos Aires, 

Argentina, 3 Hospital Dr. C. Bonorino Udaondo, 

Buenos Aires, Argentina, 4 Ministerio de Salud 

Gobierno de la Ciudad de Buenos Aires, Dirección de 

Capacitación, Buenos Aires, Argentina 

Introduction: Prevalence of C in C-PAT under 

opioid therapy has been studied in centres from 

Europe, USA, Canada and Chile, while no specific 

data is available from Argentina. Studies informed 

that even a high prevalence C rate of 60-90% of C- 

PAT, it is often underdiagnosed in clinical practice. 

Aims: To describe prevalence of C (evaluated with 

Fallon C score) in a population of C-PAT who suffer 

from cancer-related pain and receive opioids; to relate 

C with daily opioid dose and performance status (PS); 

to describe C-related symptoms and patients´ 

perceptions on C and quality of life (QL). 

Methodology: A questionnaire including 17 main 

topics was performed by trained palliative care nurses 

to 200 C-PAT under opioids, who received medical 

care at Oncology and/or Palliative Care services of 12 

hospitals or 1 palliative home care programme in 

Argentina (M/F=92/108). 99 PAT (49.5%) were > 60 

years old, 102 PAT (51%) have distant metastasis. PS 

(ECOG index) was 0-1-2 in 137 PAT (68.5%) and 3-4 

in 63 PAT (31.5%). 

Results: Following Fallon C score, 112/200 C-PAT 

(56%) suffered from C. All PAT received opioid 

analgesics (73% PAT under “strong” opioids, 90% of 

them received morphine, most -67%- received ≤ 60 

mg/daily). Most PAT (71.5%) received at least one 

laxative on regular base. There was no correlation 

among prevalence and severity of constipation and 

daily oral morphine equivalent dose (p=0.76) but C 

significantly correlated with PS (p=0.005). C-related 

symptoms were abdominal distension (77%), change 

in mood and loss of appetite (55%), interference with 

daily activities (52%), anxiety (51.5%) and pain 

(42%). The impact of C on QL was measured by line 

scale from 0 to 10, it showed that C-PAT with C had 

worse QL (median=7) than those without C 

(median=5) (p=0,0001). 

Conclusion: C seems to be an important and 

frequent symtom affecting QL in C-PAT who receive 

opioid therapy in Argentina, with higher prevalence 

in those who have worse PS (ECOG 3-4). C treatment 

should be improved. 



Symptom Prevalence in Advanced Cancer: 

Age, Gender, and Performance Status 

Interactions 

Kirkova J. 1 , Walsh D. 1 , Aktas A. 1 , Rybicki L. 2 , Schleckman 

E. 1 







States 

Introduction: Multiple factors likely influence 

symptom prevalence or severity in cancer. We report 

8 symptoms whose prevalence were associated with 

more than one of the 3 demographic characteristics of 

age, gender, and performance status (PS). 

Methods: 38 symptoms were assessed in 1,000 

consecutive advanced cancer patients. The 

association of 3 demographic factors with each 

symptom was examined using logistic regression 

analysis. The prevalence of 8 symptoms were 

associated with more than one of the three. Modelbased 

prevalence estimates were calculated for 30 

groups based on combinations of age (45, 65, 85 

years), gender (female, male), and ECOG PS (0-4). 

Prevalence differences between various groups were 

calculated; values >10% were empirically classified as 

clinically relevant. 

Results: All 3 demographic factors were significantly 

associated with the prevalence of only one symptom, 

anxiety. The frequency of all 8 decreased with older 

age. Females had a higher prevalence of nausea, 

anxiety, and vomiting than males; males had more 

sleep problems. Prevalence of constipation, sedation, 

and blackouts was higher with worse PS, whereas both 

pain and anxiety became less common with worse PS. 

We observed 2 major patterns: PS had the largest 

influence on prevalence, followed by age and then 

gender. This included pain, constipation, anxiety, 

sedation, and blackouts. In the second pattern age 

had the largest influence on prevalence, followed by 

gender and then PS; this affected sleep problems, 

nausea, and vomiting. 

Conclusions: Age, gender, and PS appear to interact 

with each other and be associated with variations in the 

prevalence of 8 symptoms in advanced cancer. 2 major 

interaction patterns were noted; PS was dominant in 

one, age in the other. These 3 demographic 

characteristics should be included as important 

variables for consideration of symptom burden in 

clinical practice, in the design of symptom research 

studies, and analysis of symptom research data. 




Metabolic Control and Nutritional 

Management of Terminal-phase Cancer 

Patients from the Viewpoint of Energy 

Metabolic Dynamics of Cachexia 

Higashiguchi T. 1 

1 Fujita Health University School of Medicine, Surgery 

and Pallative Medicine, Aichi, Japan 

Research aims: Nutritional support is essential for 

cancer patients to reduce invasive treatment and 

promote recovery of damaged non-cancer tissues. Our 

department has developed and used original 

guidelines for “gear changing” based on irreversible 

nutritional disturbance and the presence of 

uncontrollable pleural effusion, ascites, and anasarca 

clinically indicative of cachexia. 

Study design and methods: In order to determine 

the metabolic dynamics in cachectic patients and the 

significance of nutritional support, resting energy 

expenditure/basal energy expenditure (REE/BEE), 

blood chemistries, physical indices, life span after 

“gear changing”, and clinical symptoms were 

investigated in 32 inpatients in the terminal phase of 

cancer for whom indirect calorimetric and other 

required data were available. 

Results: REE/BEE was significantly lower in cachectic 

patients (0.83±0.21) than in non-cachetic patients 

(1.12±0.14). Albumin level was only 2.2±0.7 g/dL when 

gear changing occurred and exhibited no significant 

change later. Transthyretin (TTR) level was not 

improved after administration of required amounts of 

protein and energy and significantly decreased later in 

cathectic patients. Physical indices were low in 

cathectic patients: BMI 18.8±2.8, percent triceps 

skinfold (%TSF) 35.8±17, and percent arm muscle 

circumference (%AMC) 75.5±4.1. The mean life span 

after gear changing was only 18.5±10.4 days. Malaise 

and dyspnea were improved just after gear changing. 

Conclusion: Gear changing in cathectic patients 

produced transient symptomatic improvement, 

suggesting that the nutritional management used was 

suitable for the metabolic dynamics in such patients. 

In addition to clinical findings, change in TTR over 

time was a useful objective indicator for gear 

changing. 

Funding for this study was provided by Fujita Health 

University School of Medicine. 



An Assessment and Comparison of Palliative 

Care Needs of Patients with Head and Neck 

Cancer at Two Cancer Centres 

Wood J. 1 , Boyce S. 1 , Jamal H. 2 , Riley J. 3 

1 Royal Marsden Hospital NHS Foundation Trust, 

London, United Kingdom, 2 Mount Vernon Hospital 

Cancer Centre, Northwood, United Kingdom, 3 Royal 

Marsden Hospital NHS Foundation Trust, Palliative 

Medicine, London, United Kingdom 

Aim: Retrospective audit of 40 patient notes to 

identify palliative care needs of patients with 

malignant head and neck disease at two cancer 

centres. 

Methods: We retrospectively reviewed the notes of 

40 consecutive patients referred from the head and 

neck teams to palliative care services at Royal Marsden 

and Mount Vernon NHS Foundation Trusts. We 

collated demographic data (age, gender, diagnosis), 

stage of disease and current treatments, and 

documented symptom prevalence (specifically pain, 

mucositis, wound issues, nutrition, nausea and 

vomiting, constipation and diarrhoea and 

psychological distress). 

Results: There were no differences between sites in 

age (mean ±SD, 54.0±12.7 vs 61.6 ±12.6 years), gender 

(Female 7 vs 6) or diagnoses (total: SCC tongue 41%, 

SCC tonsil 8%, undifferentiated nasopharyngeal ca 

8%, SCC mandible, oropharynx, larynx and neck 5% 

each). 95% of patients had received radiotherapy, 73% 

chemotherapy and 43% surgery. The aim of treatment 

was palliative 69%, curative 17%, terminal 9%, with 

5% in remission. There was equal spread across sites. 

Patients were seen in the inpatient setting 70%, 

outpatient clinic 24% and both 3%. Of the symptoms 

above, patients each described 1-5 areas of concern, 

with a median of 3 symptoms per patient. Pain was 

most frequently reported by patients (89%), followed 

by nutritional concerns (43%), constipation (38%), 

nausea (32%), vomiting (30%), psychological distress 

(24%), mucositis (16%), and diarrhoea (5%). There 

were no wound issues in this cohort but a number of 

other individual symptoms were described. 

Conclusions: This review demonstrated a high 

symptom burden in this group of patients and has led 

to development of a structured assessment tool linked 

with specific evidence based symptom control 

guidelines to assist clinicians in improving patient 

management and expedite appropriate referrals to 

other multi-professional colleagues. This tool will be 

presented with prospective evaluation of its clinical use. 



Complications Associated with Radiotherapy 

and the Role of Physiotherapy 

Frota A. 1 , Wendt A. 1 , Xavier P. 1 , Molinaro M. 2 

1 Federal Institute of Rio de Janeiro, Rio de Janeiro, 

Brazil, 2 Federal Institute of Rio de Janeiro and National 

Cancer Institute of Brazil, Rio de Janeiro, Brazil 

This article presents a literature review, made by 

students of physiotherapy, about treatment of cancer 

patients undergoing radiotherapy in palliative care. 

Although the beneficial effect of radiotherapy in 

cancer treatment, there are many acute or chronicle 

complications associated with this treatment, and 

some in advanced cancer and in palliative care, which 

may affect the quality of life (QOL) of patients. The 

aim of this study is to conduct an analysis of changes 

in skin care and side effects of radiation therapy, such 

as subcutaneous fibrosis and muscular fatigue. 

The method used was a review searching at databases 

Scielo, LILACS and Medline, and published in the years 

2008 to 2010, the language selected were Portuguese 

and English and the keywords used were: radiotherapy 

and palliative care. The criteria inclusion: original 

articles, interventional study, randomized or not about 

radiotherapy complications in palliative care. 

Results: Eight articles were found only six of them 

used for construction of the review. The usual 

complications were: Fatigue, subcutaneous fibrosis 

and psychological needs, which affects the QOL of 

patients. and wounds and radiodermatitis. The 

studies showed the improvement of physical and 

psychological aspects after exercises, and the 

orientation to family and patients, especially because 

exercises help to prevent ulcers. 

Conclusion: The role of Physiotherapy is to prevent 

fatigue and skin problems, educating family and 

patients. Exercises during treatment of radiotherapy 

and after the same can avoid fatigue and wounds 

(decubitus ulcer) especially when patients are in 

palliative care when the fatigue is more frequent, and 

patients have the skin more fragile and usually prefer 

to lay instead doing activities. 



Pilot Study about the Use of Methylnaltrexone 

in Constipation Resistant to Oral Laxatives for 

Patients under Paliative Care 

Portela M.A. 1 , Centeno C. 1 , Larumbe A. 1 , Canals J. 2 , 

Palomar C. 3 , Zuriarrain Y. 4 , Urdiroz J. 1 


Navarra, Pamplona, Spain, 2 Unidad Funcional 

interdisciplinar socio-sanitaria (UFISS), Hospital 

Universitario Arnau de Vilanova, Lérida, Spain, 

3 UFISS, Hospital Universitario Arnau de Vilanova, 

Lérida, Spain, 4 Hospital Centro de Cuidados Laguna, 


Background: Constipation is a major problem for 

patients receiving palliative care, particularly if they 

use opioids; it has been reported in 48% of these 

patients. 

Methylnaltrexone (MTNX), systemic opioid 

antagonist, has been approved at Europe for 

constipation treatment for patients with an advanced 

illness treated with opiods. Its efficacy and short-time 

tolerance has been demonstrated in two randomized 

double-blind trials. 

Objective: We have conducted a prospective study 

to assess the efficacy of MTNX. 

Method: Patients, 18 y.o. or older with advanced 

disease, who had received stable doses of opioids and 

laxatives for 3 or more days without relief of opioidinduced 

constipation were recruited. The study was 

conducted in two Spanish hospitals (Clínica 

Universidad de Navarra and Hospital Universitario 

Arnau de Vilanova). They received treatment with 

MTNX every 48 hours according to investigator´s 

criteria. Laxation in the next 4 hours after MTNX 

administration was considered as positive result. 

Results: Currently, 16 patients were recruited. The 


median time of follow-up was 16 days. 34 doses were 

used and the positive response was achieved in 62%. 

Laxation after the first dose before 24 hours was 

reported in 81%. 3 patients received a second dose 

after the first 24h without response. Adverse events 

were reported in 7 patients (4 showed abdominal pain 

and 2 diarrhea). Treatment was discontinued due to 

side effects. 

Conclusions: Our data show similar response rate 

that previously published. Response is achieved in the 

majority of cases (81%) within the first 24 hours 

showing an acceptable tolerance profile (75%) 

suggesting a better selection of patients must be 

pursued. 



Does Mirtazapine Improve Quality of Life and 

Symptoms in Advanced Cancer? 

Davis M. 1 , Kirkova J. 2 , Walsh D. 2 , Lagman R. 2 , Karafa M. 2 

1 The Harry R. Horvitz Center for Palliative Medicine, 

Department of Solid Tumor Oncology, Taussig 

Cancer Center,The Cleveland Clinic, Cleveland, OH, 

United States, 2 Cleveland Clinic, Cleveland, OH, 

United States 

Introduction: Anorexia, anxiety, fatigue, insomnia, 

nausea, weight loss, and reduced quality of life are 

common in advanced cancer. We assessed the 

benefits of mirtazapine on quality of life, and 

secondarily on anxiety, anorexia, depression, fatigue, 

insomnia and nausea in individuals with advanced 

cancer. 

Method: Cancer patients entered the study if quality 

of life (QOL) scores on the EORTC-QLQ-C30 Likert 

Scale (1-7) were 5 or less (1 poor QOL, 5 normal QOL). 

Secondary outcomes assessed by the EORTC-QLQ- 

C30 Likert Symptom Scales were anorexia, anxiety, 

depression, fatigue, insomnia, nausea and pain. 

Improvement of 1 point in QOL, and/or symptom 

score defined response. Mirtazapine doses were 15mg 

at night for 7 days, increased to 30mg if no response 

or limiting toxicity. Patients evaluable for response 

completed a minimum of 7 days of this 14 day trial. 

Toxicity was evaluable after the first dose and 

measured twice weekly by categorical scale (1-5). A 

minimum 33% response rate was needed for 

mirtazapine to be considered effective and 

appropriate for randomized trials. 

Results: 36 completed 1 week and 23 completed 2 

weeks. Only 8% had improved QOL. Of the 

symptoms, only anxiety (33%; 95% CI 21-47%) and 

insomnia (33%; 95% CI 21-47%) met response 

targets. Increased doses did not improve response.A 

significant number dropped out the first week, mainly 

due to sedation. 

Discussion: Mirtazapine did not improve QOL and 

marginally improved insomnia and 

anxiety.Mirtazapine appears to be tolerated less well 

in advanced cancer then other populations. 

Conclusion: Mirtazapine did not improve quality of 

life and marginally improved anxiety and insomnia 

in advanced cancer. 




Modafinil: How Is it Beeing Used in Paliative 

Care 

Aparicio M. 1,2 , Rei M. 1 , Valle C. 1,2 , Santos C. 1 , Neto I. 1 




Introduction: Fatigue, sleepiness and depression are 

among the most disabling symptoms for palliative 

care patients and are simultaneously the most 

difficult to control. Modafinil is a relatively new 

pshycostimulant with a better safety profile compared 

to other drugs in this group, however information 

about its use in the context of palliative care is still 

limited. 

Research aim: To characterize the use of modafinil 

in the patients admitted to a palliative care unit in a 

private hospital, between 1 st September 2009 and 30 th 

September 2010. 

Study design and methods: Retrospective and 

systematic review of all the clinical inpatients records 

with a prescription of modafinil in the defined period. 

Relevant data was collected and analyzed at 

quantitative and descriptive level. 

Main results: There were 54 episodes of 

hospitalization with a prescription of modafinil, 

corresponding to 1/6 of total episodes. The majority 

253 


(Friday)


(Friday) 


of patients had metastatic cancer disease and the 

average age was 70 years. The main reasons for 

initiating modafinil were fatigue (42.6%), sleepiness 

(25.9%) and cognitive dysfunction (11.1%). The 

maximum daily dose was 200 mg in 90% of cases. it 

took a median of 5 days to initiate and the median 

treatment duration was 8 days. 27.8% of the patients 

were discharged on modafinil but another 27.8% 

suspended for inefficiency. The two other main 

motives for suspension were worsening of general 

condition (18.5%) and manifestations of 

agitation/confusion (16.7%). 

Conclusion: The main reason for prescribing 

modafinil was fatigue. Although a significant number 

of patients went home on modafinil there was a 

similar number that discontinued treatment for 

inefficiency. These findings suggest the need for a 

prospective evaluation of the management of fatigue 

and the use of modafinil. 



Should Palliative Care Expand to Include the 

Identification and Referral of Patients´ Legal 

Problems? 

GunnClark N. 1 


Cape Town, South Africa 

Patients with life-threatening illness worry about : 

Who will inherit my property when I die or who will 

take care of my children? These worries involve a legal 

issue. Not all problems facing hospice patients are 

resolved with pain control and symptom 

management. Some patients experience a violation of 

their rights, face stigma or discrimination due to their 

illness. Legal problems can be difficult to resolve and 

unresolved problems negatively affect peace of mind 

and quality of life. 

How do patients access justice and legal assistance 

when they are bedbound at home? Would access to 

justice & access to legal assistance improve quality of 

life for patients? 

Aims: Assessment of the impact of legal capacitybuilding. 

Methods: Evaluation of a one-year pilot study 

looking at the impact of law workshops at hospice. 

External evaluator to observe workshops on such 

topics as: Inheritance & Property, the new Children´s 

Act, State financial help (social grants), school fees, 

debt management, health issues in the context of the 

SA Constitution, the Bill of Rights & National Health 

Act. Topics are also: Disclosure of HIV status, stigma, 

& patients rights. Evaluation to also focus on whether 

facilitators used information from Legal Aspects of 

Palliative Care (2009). This practical resource book was 

developed as a collaboration between palliative care 

practitioners and legal experts to guide those working 

in the field. 

Results: Assessment of law workshops by external 

independent evaluator. Assessment via observation of 

workshops, interviews with staff, and focus groups. 

Report by evaluator expected end of 2010. Report 

expected to confirm the need for legal training to 

identify and refer legal problems. 

Conclusion: Expansion of palliative skills to include 

the identification and referral of legal problems. Next 

steps: develop legal training material for all levels of 

hospice staff (clinicians, nurses, social workers, 

administrators and community workers). 

Project funder: Open Society 



Palliative Sedation: A Means to Care for the 

Palliative Patient - The Portuguese Reality 

Flores R. 1 , Capelas M.L. 2 , Pimentel F. 3 

1 Portuguese Catholic University, Lisbon Hospital Dr. 

Fernando da Fonseca, E.P.E, Lisbon, Portugal, 

2 Portuguese Catholic University, Lisbon, Portugal, 

3 University of Aveiro, Campus Universitário de 

Santiago, 3810-193 Aveiro, CEISUC and ‘Infante D. 

Pedro’ Hospital, Department of Health Sciences, 

Aveiro, Portugal 

Aim: To know: How, when and why the practice of 

palliative sedation in portuguese palliative care units? 

Methods: This study is simple, descriptive, 

quantitative and retrospective. The target population 

is characterised by patients admitted to inpatients 

palliative care units (n = 761) in 2008. 

Results: The essential structure of the phenomenon 

in this study reveals that: 

- 9.3% of the population underwent this procedure; 

- Sedation occurred on average 11 days after 

hospitalisation, with an average length of 67.2 hours 

with a median at day 8 th ; 

- The reason that conditioned the practice of sedation 

was mainly psychological distress (81.7%) followed by 

emergencies and refractory symptoms (33.8%) and in 

50.7% of the cases, there is evidence of more than one 

refractory symptom;- Additional intervention 

(psychological, social and spiritual) was neither 

regular nor systematic;- In only 15.5% the patient`s 

opinion was taken into account in the decision 

making process (verbal consent); - Sedation occurred 

in a moderate degree in 35.2% cases, it was 

continuous 81.69% of the times, primary in 91.5% of 

the cases and permanent in 87.3%; Midazolam was 

the drug most commonly used in about 83.1% of 

cases, followed by levomepromazine in 39.4% of the 

situations. Morphine was used in 66.2%; - The fact 

that no systematic records of vital parameters or use of 

assessment tools / monitoring scales of sedation was 

used, makes it impossible to establish a relationship 

between this procedure and possible complications 

that might arise from it;- 54.9% of the cases 

terminated in a pacific death with the relief of 

suffering. However, there is no information regarding 

the “quality of death” in the remaining cases. 

Conclusions: The absence or unclear records may 

lead to false interpretations, therefore this study 

reinforces the need to develop intervention protocols. 

These should clearly describe the team roles as well as 

the need to validate and monitor the different 

evaluation scales. 



Comparative Analysis of Home versus 

Hospital Care of Patients in Advanced Stages 

of the Illness 

Gimeno V. 1 , Unió I. 2 , Martinez L. 3 , Pérez C. 4 , Tejedo M.J. 1 , 

Forcano S. 1 , Agulló E. 1 , Valls A. 1 , Atencia F. 1 , Perpiñá A. 1 

1 Hospital Clínico, Unidad Hospital a Domicilio, 

Valencia, Spain, 2 Centro de Salud Serrería II, Valencia, 

Spain, 3 CARENA, Valencia, Spain, 4 Hospital de la 

Malvarrosa, Valencia, Spain 

Research aims: Study the differences in symptom 

intensity and emotional distress in advanced cancer 

patients treated in a Palliative Care Inpatient Service 

(PCIS) of a hospice compared with patients treated at 

home by a Home Palliate Care Team (HPCT). 

Study desgin and methods: Prospective 

observational study of a cohort of advanced cancer 

patients referred consecutively from the hospital’s 

acute oncology ward to PCIS and HPCT, respectively, 

for 6 months with a three-month follow-up period. 

For evaluation we used: the Edmonton Symptom 

Assessment System (ESAS) for symptoms; and the 

Hospital Anxiety and Depression (HAD) scale. 

Statistical analysis was performed with SPSS: in the 

case of normal or sufficient sample size (n> 30) 

parametric tests were applied while for insufficient 

sample size, nonparametric tests were used with a 

significance level of 0.05. 

Results: A total of 167 patients were studied: 137 

cared for by HPCT and 37 by PCIS. Three hundred and 

twelve (312) and 68 ESAS were performed in the 

HPCT and PCIS groups, respectively; average: pain 

3.72 vs 2.40 (>0.05); tiredness 5.8 vs 5.1 (>0.05); 

nausea 1.2 vs 1 (>0.05); depression 3.5 vs 3.7 (>0.05); 

anxiety 2.8 vs 2 (>0.05); drowsiness 2.6 vs 3.9 (0.002); 

appetite 4.7 vs 4.5 (>0.05); wellbeing 3 vs 1.5 (0.012); 

shortness of breath 2.7 vs 2.8 (>0.05). Insomnia 2.8 vs 

2.2 (>0.05). Meanwhile, the HAD scale was assessed 

247 times in the HPCT group and 39 in PCIS group: 

anxiety 6.43 (CL* 5.4-7.3) vs 6.45 (CL 4.2-8.6) p>0.05; 

depression 8.79 (CL 7.7-9.6) vs 9.73 (CL 6.9-12.4) p 

>0.05 . The 37 patients in the PCIS group died within 

the follow-up period, with an average stay of 17.5 

days compared to the 30.6 days corresponding to the 

104 who died at home (p = 0.006). 

Conclusion: Advanced cancer patients treated in 

their own homes by HPCT do not experience physical 

symptoms or emotional distress of greater intensity 

than patients cared for at a hospice PCIS. 

*CL=confidence level. 



A Retrospective Chart Review of Agitation in 

Terminal Cancer Patients 

Okamoto Y. 1 , Nagase M. 1 , Tsuneto S. 2 , Tanimukai H. 3 , 

Matsuda Y. 4 , Okishiro N. 2 , Kumakura Y. 2 , Ohno Y. 5 , 

Tsugane M. 1 , Takagi T. 6 , Uejima E. 1 

1 Osaka University Graduate School of Pharmaceutical 

Sciences, Department of Hospital Pharmacy 

Education, Suita, Japan, 2 Osaka University Graduate 

School of Medicine, Department of Palliative 

Medicine, Suita, Japan, 3 Osaka University Graduate 

School of Medicine, Department of Psychiatry, Suita, 

Japan, 4 Osaka University Graduate School of Medicine, 

Department of Anesthesiology and Intensive Care 

Medicine, Suita, Japan, 5 Osaka University Hospital, 

Oncology Center, Suita, Japan, 6 Osaka University 

Graduate School of Pharmaceutical Sciences, 

Pharmainformatics and Pharmacometrics, Suita, Japan 

Aim: Agitation is frequently observed in terminal 

cancer patients. It occurs suddenly and fluctuates 

quickly. The aim of this study was to understand its 

features. 

Method: We conducted a retrospective chart review 

to collect all medical records of terminal cancer 

patients who died in Osaka University Hospital from 

January 1st to December 31st in 2008. We assessed 

agitation according to the item 9 (psychomotor 

activity) of the Memorial Delirium Assessment Scale. 

Multiple comparisons and Fisher’s exact test were 

used to compare the agitation and non-agitation 

groups. 

Results: One hundred fifteen patients (64 males and 

51 females) were enrolled in this study. The mean age 

was 58.8±15.3 years old. The primary tumor sites were 

hematological origin 28, lung 14 and breast 14. 

Agitation was observed in 49 patients (42%). It 

occurred within 15days of death in 30 patients (61%). 

The causes of agitation were identified in 7 patients 

(14%). The significant risk factors were male gender, 

history of smoking, lung cancer and diabetes mellitus. 

Conclusion: We should raise awareness regarding 

terminal cancer patients with risk factor of agitation. 



Prospective Evaluation of the Frequency and 

Treatment of RLS on a Palliative Care Unit 

Hensler M. 1 , Remi J. 1 , Lorenzl S. 1 

1 University of Munich, Department of Palliative Care 

and Neurology, Munich, Germany 

Introduction: Common medical problems are 

often associated with abnormalities of sleep. Patients 

with chronic medical disorders often have fewer 

hours of sleep and less restorative sleep compared to 

healthy individuals, and this poor sleep may worsen 

the subjective symptoms of the disorder. complaints 

often due to insomnia, insufficient sleep, or restless 

legs syndrome. The frequency of RLS in patients 

suffering from malignant diseases reaches from 20 - 

46%. 

Since there are no data published related to the 

frequency of the restless legs syndrome (RLS) in 

patients in endstage malignant diseases, we aimed to 

document the frequency and treatment options of 

RLS on a palliative care unit. 

Methods: Since January 2010 we have prospectively 

examined patients in our palliative care unit after the 

RLS diagnostic criteria of the consensus conference of 

the National Institute of Health. 

Results: Until now (October 2010) we have 

examined 212 patients in our palliative care unit. 

94,1% with malignant diseases and 5,9% with nonmalignant 

diseases. 3 (1%) of this patients fulfilled the 

diagnostic criteria for RLS. Two patients received have 

been treated with transdermal rotigotine and in the 

other patient symptoms resolved upon switching 

from fentanyl patch to levomethadone. Symptoms 

were effectively treated after one day in two patients. 

However, one patient treated with rotigotine needed 

additional pallaitive sedation since symptoms of 

gerenal stress were evolving. 

Conclusion: RLS might not be a common cause of 

sleep disturbance in patients on a palliative care unit. 

However, patients who fullfill diagnostic criterea are 

treated effectively with rotigotine. The reason for the 

low frequency of RLS might be treatment with opioids 

in a significant number of patients in advanced stages 

of their diseases. 




Thromboembolic Disease in Far-advanced 

Cancer In-patients: Incidence, Complications, 

Primary Thromboprophylaxis and Patients’ 

Opinion 

Garzón C. 1 , Porta J. 1 , Mañas V. 1 , Llorens S. 1 , Serrano G. 1 

1 Institut Català Oncologia, Palliative Care, 

L’Hospitalet Llobregat, Spain 

Aims: To determine the frequency of 

thromboembolic events (TEE) in far-advanced cancer 

pts admitted in our unit and their associated 

complications and mortality. Secondary aims are to 

assess the thromboprophylaxis (TP) used during 

admission, and the patients’ information and 

acceptance of TP (heparin sc). 

Material & methods: Descriptive prospective study 

enrolling far-advanced cancer pts admitted in an acute 

palliative care unit. We recorded socio-demographic 

data. Risk factors for TED, cause of admission, and the 

existence of any TEE during admission and until 15 

days after discharge. We also recorded the use and side 

effects of TP during the study. Semi-structured 

interviews to the pts assessing knowledge and 

acceptance of primary TP were conducted. 

Results: We included 140 consecutively admitted 

patients from May to June 2010. The mean age was 65 

yrs. The most frequents cancer were digestive (43%) & 

lung (19%). Ten (7%) pts had TEE related with TED; in 

4 of them was the reason for admission, in 4 during 

admission & in 2 during the 15 days after discharge. 

Pulmonary Thromboembolism (PTE) occured in 7 pts, 

Deep Vein Thrombosis (DVT) in 4 and in 1 patient 

both. Complications associated with TP were 

minor.The factors associated with TEE were PPS≤50, 

recent ChT and abdominal-pelvic neoplasm; none 

reached statistic significance in a logistic regression 

model. The mortality Odds of the TEE group vs. no- 

TEE group was 1.68 IC (0.45-6.23). The risk associated 

with TED and the aim of TP was well known by 23% 

of patients. The majority of pts (70%) found the use of 

subcutaneous heparin little or not disturbing. 

Conclusions: The incidence found is coinsistent 

with the few previous published works. Related 

adverse effects to prophylactic heparin were few and 

mild. Mortality was higher in the group of patients 

suffering TEE. There is a great acceptance of using 

heparin sc (70%), although precise knowledge of TP is 

low (25%) in our setting. 



Methylnaltrexone Used in Opioid-induced 

Urinary Retention: 2 Cases Report 

Malagón Solana B. 1 , Perpiñá Fortea C. 2 , Ortega Morell A. 3 , 

Garcia Garcia J. 4 , Díaz Vivas E. 5 , Romero Sánchez E. 1 

1 Servicio Andaluz de Salud, Unidad Docente de 

Medicina Familiar y Comunitaria de Málaga, Torre del 

Mar, Spain, 2 Servicio Andaluz de Salud, Medicina 

Familiar y Comunitaria, Torre del Mar, Spain, 

3 Servicio Andaluz de Salud, Equipo de Soporte de 

Cuidados Paliativos, Antequera, Spain, 4 Servicio 

Andaluz de Salud, Equipo de Soporte de Cuidados 

Paliativos, Granada, Spain, 5 Boots Pharmacy & 

Health, Pharmacy, Macclesfield, United Kingdom 

Case: Male, 67; Hypertension, chronic kidney disease 

IV, Hyperlipoproteinemia, sensorimotor 

polyneurophaty; chronic lacunar stroke. 

December 2009: lung cancer with vertebral body and 

brain metastases. PCST* contacted the patient in 

January 2010. He died on March 2010. 

Principal symptoms: dry cough and dyspnea. 

Case: Male, 54, no previous diseases. 

September 2008: Esophagogastric Junction 

cancer with liver, lung and retroperitoneum 

metastases.Palliative QT* since April 2010. He died in 

July 2010. 

Principal symptom: Pain. Patient needed frequent 

increases of the doses of stronger opioid. 

Both patients discontinued medication every time 

opioid dosage increased because UR* and 

constipation appeared. Any prostate or bladder 

organic pathology were involved in the UR. Urinary 

catheter was offered; both patients refused it. 

Methylnaltrexone finally relieved the UR. 

April 2008: the FDA approved methylnaltrexone as 

the first peripheral micro-opioid-receptor antagonist 

for the treatment of opioid-induced constipation in 

advanced-illness patients receiving palliative care and 

for whom other laxative therapies failed to achieve 

adequate results. Methylnaltrexone´s mechanism of 

action suggests it could be beneficial for other 

peripheral, opioid-induced adverse effects, such as 

nausea, vomiting, UR, pruritus or postoperative ileus. 

Conclusion: UR is a peripheral opioid-induced 

adverse effect with important complications. Maybe 

we underestimated the real frequency in our patient 

because those presenting with retention often have a 

prior history of urological disorders or risk factors for 

retention of drugs (such as opioids, anticholinergics), 

constipation, poor mobility, etc. Methylnaltrexone as 

relief for this symptom could be beneficial and there is 

the need for further studies along this line. 

Urinary retention: UR; Palliative Care Support 

Team:PCST; Chemotherapy: QT 


Withdrawn 



Patients with Advanced Cancer Developing 

Delirous Symptoms in their Home 

Jespersen B.A. 1 , Jespersen T.W. 1 

1 Aarhus University Hospital, Oncology, Aarhus C, 

Denmark 

Background: Delirium is defined as a disturbance in 

consciousness with reduced ability to focus, sustain, 

or shift attention, with cognitive or perceptual 

disturbances that occur over a short period of time, 

with an organic etiology. Delirium is one of the most 

common and distressing symptoms in patients with 

advanced cancer. It is present in 26-44% of advanced 

cancer patients at the time of hospital or hospice 

admission and almost all patients with advanced 

cancer develop delirious symptoms in the last hours 

or days before death. Delirium is often 

underdiagnosed by the professionals. The aim of this 

study is to describe the time interval between delirious 

symptoms and death, place of death and admissions 

to hospital due to delirium. 

Method: Over a period of 18 months, a specialist 

palliative home care team registered all patients with 

advanced cancer developing delirious symptoms at 

home. Patients were included if they presented 1 or 

more of 5 pre-defined delirious symptoms. No 

delirium specific assessment tools were used. 

Results: 66 patients were included in the study, 41 

men and 25 women. Median age was 66 years. 13 

patients (20%) had brain metastases. 13 patients 

(20%) received antibiotics because of infection. 63 

patients (95%) were treated with opioids and 50 (76%) 

with steroids. 33 patients were admitted to hospital or 

hospice because of the delirious symptoms. 23 

patients died at home still having delirious 

symptoms, with a median duration of 6 days. Only 9 

patients recovered from the delirious episode while 

still at home. 

Conclusion: Difficulties in managing the delirious 

advanced cancer patient at home lead to 

institutionalization. Half of the patients in this study 

were admitted to either hospital or hospice due to 

delirious symptoms. In the future we must focus on 

predictors of delirium and multimodal preventive 

interventions in order to reduce the amount of stress 

and suffering for the patient and their family and 

enable the patient to stay at home. 



The Role of Physiotherapy in Palliative Care 

Treating Patients with Lymphedema 

Chaves A. 1 , Lila L. 1 , Pimenta P. 1 , Silva P. 1 , Lima R. 1 , 

Fernandes T. 1 , Molinaro M. 2 

1 Federal Institute of Rio de Janeiro, Rio de Janeiro, 

Brazil, 2 National Cancer Institute of Brazil, Rio de 

Janeiro, Brazil 

Lymphedema is a complication of some kind of 

cancers, specially breast cancer, and a type of edema 

from the abnormal fluid and protein in tissues usually 

resulting from failure of lymphatic drainage system. 

The manual lymphatic drainage (MLD) is one of the 

mainstays in physical therapy in lymphedema. In 

Palliative Care the objective of physiotherapy is not 

reduce the lymphedema, but help patient with 

problems of mobility and pain. The aim of this study 

was to score the performance and goals of 

Physiotherapy in palliative care to treat lymphedema. 

Method: Literature review conducted through 

searches of scientific articles from 2001 to 2010 at 

SCIELO, Lilacs and Pubmed databases, the keywords 

were: Physiotherapy, Palliative Care and Lymphedema. 


Result: Fifteen articles were found at all. However, 

just eleven fitted the inclusion criteria. Of these 

eleven, eight described the lymphatic drainage as a 

major physiotherapy treatments in lymphedema. 

Conclusion: It was noticed a decrease of swelling, 

but there is not a total success of healing, and it is not 

the aim in Palliative Care. Thus, no definitive results 

can be obtained. The main interventions for patients 

with no possibility of healing are painkiller methods, 

contributing effectively in the resumption of activities 

of daily living, comfort, dignity and increased support 

from other professionals to improve significantly 

quality of life. It was concluded that physiotherapy 

has a large number of useful intervention methods in 

palliative treatment in cases of lymphedema, in 

which the manual lymphatic drainage is emphasized. 



Interventional Techniques in Palliative Care 

Vilches Y. 1 , Lacasta M. 1 , Alonso A. 1 , Diez-Porres L. 1 , Fraile 

J.M. 1 , Perez-Manrique T. 1 , Ybarra C. 1 

1 Hospital Universitario La Paz, Madrid, Spain 

Introduction and goals: Invasive interventions 

(IT) are necessary to provide palliative care to patients 

with advanced diseases. The goal of this study is to 

describe IT in patients of our palliative care unit 

(PCU): 

Materials and methods: A retrospective review was 

done on the charts of all patients admitted in the PCU 

since its foundation in May 2008 until November 

2009. Mann-Withney U-test is used to explore the 

association between variables. 

Results: A total of 507 patients admitted in the PCU 

were reviewed . 45 underwent IT (8,8%).23 (51%) 

females. Median age 67,66 years (38-88). Thirty eight 

(84,44%) are oncologic patients. Six are no oncologic 

(13,6%). 

Data of technique, results, inmediate and late 

complications are shown in poster.Time from 

admission to IT application: Median of 4,6 days(1-13 

days). Thirty patients (66,6%): Discharge after 

improvement . Twelve (26,66%) died in hospital . Five 

(11%) died in less than 4 days from the IT. 26 patients 

(57%) have died after the discharge.Survival rate from 

the IT: 2,9 months (89 days) (16-330). Ten patients 

(38,4%) have died at home , 7 in PCU (26,92%), 7 at 

hospice (26,92%), 1 in Urgencies (3,84%) and 1 

patient in other hospital (3,84%)There is no 

significant difference between Barthel (p=0,23),PPS 

(p=0,62) and MMSE (p=0,71) and likelihood of 

discharge or exitus in hospital.There is significant 

difference between Papscore and likelihood of 

discharge or exitus in hospital (p=0,040). 

Conclusions: 

1.- The IT allows to solve the claim that causes 

admission in PCU in 66,6% of patients. 

2.- Time of delay is 4 days 

3.- Most complications are minor (26%). 

4.- Survival rate is near 3 months and 40% died at 

home. 

5.- Patients discharge at home had a low PapScore 

comparing with died in hospital what supports the 

usefulness of PapScore in clinical decisions. 




The Electrogastrogram and Blood Markers in 

Patients with Advanced Cancer 

Chasen M. 1 , Bhargava R. 1 

1 University of Ottawa-Elisabeth Bruyere Hospital, 

Department of Oncology, Ottawa, ON, Canada 

Objectives: Electrogastrography (EGG) is a 

technique used to record gastric myoelectrical activity 

(GMA).Our aim is to investigate: 

(i) the prevalent patterns of GMA 

(ii) the most frequent gastrointestinal symptoms 

reported on the dyspepsia symptom severity index 

(DSSI) 

(iii) EGG diagnosis and correlations with 

gastrointestinal symptoms, Ghrelin and 

inflammatory markers. 

Methods: An EGG was performed 10 min preprandial 

and 30 min postprandial after ingestion of 

500 ml water.EGG measurements were recorded by 

electrodes positioned externally on the abdominal 

wall.C-reactive protein (CRP),Ghrelin and Albumin 

were included at baseline. 

Result: There were 53 patients enrolled, median age 

60 years, range (18 - 82 years). EGG diagnoses: Mixed 

Dysrythmia (n=25), Tachygastria (n=15), Bradygastria 

255 


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(n=6), Gastric outlet obstruction (n=1)and Normal 

(n=6).47 patients with an abnormal EGG had high 

median CRP, low albumin and high Ghrelin levels 

when compared to 6 patients with a normal EGG. 

CRP[12(8-22) vs 6(5-8)]; Albumin [35(26-40) vs 

38.5(34-42)]; Ghrelin[4(2-10) vs 2.5(2-9)]. According 

to the DSSI, most frequent dysmotility like symptom 

were: 

(i) frequent burping and belching[73.6%] 

(ii) bloating [60.4%] 

(iii) feeling full after meals [69.8%]; 

(iv) inability to finish normal size meal [66 %] 

(v) abdominal distention [51%] and 

(vi) nausea after meals [50.9%]. 

The most frequent reflux and ulcer like symptom 

were: (i) regurgitation of bitter fluid [43.4%]; and 

abdominal pain before meals [39.6%]. The most 

frequent nutrition impact symptoms as recorded on 

the PGSGA in patients with an abnormal EGG 

diagnosis were: no appetite or did not feel like eating, 

nausea, vomiting and feeling full quickly. 

Conclusions: Abnormal EGG diagnosis, ghrelin, 

albumin and CRP levels are found in the majority of 

patients with advanced cancer. Further studies are 

needed to better understand the correlation of these 

abnormal serum levels and their interaction with the 

pathogenesis of abnormal electrogastrographic 

rhythm. 



Total Parental Nutrition in Palliative Care 

Patients 

Łuczak J. 1 , Gorzeličska L. 1 , Karwowska K. 2 , Sopata M. 1 , 

Kotličska A. 1 

1 Medical University of Poznan, Palliative Care 

Department, Poznan, Poland, 2 Clinical Hospital of 

Medical University in Poznan, Intensive Care 

Department, Poznan, Poland 

Aim: There is controversy regarding the use of total 

parental nutrition (TPN) in patients with advanced 

cancer. The aim of this study was to determine 

whether patients with GI-tract malignant obstruction 

or other couses which make sufficient nutrition by GI 

tract impossible, can benefit from TPN. 

Method: Between 2008 and 2010 we implemented 

TPN in 34 pts hospitalized in a palliative care unit. 

The group consists of 24 pts with GI tract obstruction, 

7 pts with other couses which made impossible 

sufficient nutrition by GI tract and 3 pts with short 

bowel syndrom due to ileostomy. Median Karnofsky´ 

score was 50 (range 30-70), ECOG 3 (range 1-4). After 

preliminary assesment and a period of adjusting 

factors as hydration and electrolyte imbalance, 

optimal composition of TPN were given to the pts via 

18-hour drip. Patients in a stable general condition 

who benefited from TPN were discharged home 

where TPN was continued. 

Results: 11 pts continued TPN at home.The median 

time of TPN on the unit was 23 days (range 2-148). 

The median time at home was 59 days (range 9-178). 

The median time between discontinuing TPN and 

death was 2.5 days (range 0-5 days). The median 

survival from start of TPN was 48 days (range 5-180). 

Adverse events that occured were as follows: 7 

episodes of the venous line sepsis, 1 episode of deep 

vein thrombosis, 1 episode of circulatory failure. 

Conclusion: The best results were obtained in 

patients with short bowel syndrom due to ileostomy. 

Their median survival was -122 days , whereas 

patients´ with GI tract obstruction only 42 days. In pts 

with bowel obstruction other factors related to its 

severe consequences play undoubtedly a role in 

shortening time of survival. In our retrospective survey 

we did not use QLQ scales in the assessment, but we 

regulary asked the pts about the will to continue or 

stop the treatment. On this base we can state that the 

majority of them considered TPN as being beneficial 

(only 2 pts asked to stop the treatment). 



Traumatic Experiences of Patients with 


Mystakidou K. 1 , Parpa E. 1 , Tsilika E. 1 , Panagiotou I. 1 , 

Roumeliotou A. 1 , Gouliamos A. 2 

1 Pain Relief & Palliative Care Unit, Areteion Hospital, 

School of Medicine, University of Athens, Radiology, 

Athens, Greece, 2 Areteion Hospital, School of 

Medicine, University of Athens, Radiology, Athens, 

Greece 

Research aims: The purpose of the study was to 

investigate posttraumatic stress disorder (PTSD) in 

advanced cancer patients and their reported 

traumatic experiences. 

Study design & methods: A descriptive analysis 

was conducted. From 195 patients participated in the 

study, 170 patients had PTSD (15.5%) while 25 (2.3%) 

patients had other anxiety disorders.The diagnoses 

were made in strict accordance with Structured 

Clinical Interview for DSM-IV Axis I disorders (SCID- 

I)-Clinician version. 

Results: The mean time since cancer diagnosis in 

months was 32.95±45.82 for patients with PTSD and 

23.19±28.16 for patients with anxiety disorders. From 

170 patients, who fulfilled PTSD criteria, 4 (2.4%) had 

panic disorder with agoraphobia, 6 (3.5%) had panic 

disorder without agoraphobia, 18 (10.6%) patients 

fulfilled criteria for generalized anxiety disorders, 20 

(11.8%) patients had anxiety disorder due to their 

cancer disease and finally, 2 (1%) patients had 

obsessive-compulsive disorder. The majority of the 

patients (66.7%) with PTSD, reported that cancer 

diagnosis was the traumatic event for them, and 

responded with intense fear, helplessness and horror. 

In addition, 10.8% reported that they have 

experienced a death of a loved one, while the rest of 

them, reported as traumatic events, other reasons 

Conclusion: The clinical importance of PTSD 

diagnosis is in great importance in advanced cancer 

patients. Death of a beloved one and cancer disease 

seemed to be the most traumatic events for patients in 

advanced stages of cancer and thus, 

psychotherapeutic treatment should be essential. 



Experience on the Use of Hickman Peritoneal 

Catheters in the Treatment of Malignant 

Ascites 

Sales P. 1 , Calsina A. 2 , Lopez M. 2 , Poyato E. 2 , Cabrera M. 2 , 

Grimau I. 1 


Sabadell, Spain, 2 Health Corporation Parc Tauli, 

Home Palliative Care, Sabadell, Spain 

Introduction: Malignant ascites appears in 15-50% 

of patients with cancer. Several pharmacological 

treatments and procedures have been used to manage 

it; as, for instance, peritoneal catheters. The aim of 

this study is to determine the prevalence of 

complications with these and their duration. 

Methods: Observational descriptive retrospective 

study. Patients included were over 18 with advanced 

cancer to whom a Hickman peritoneal catheter had 

been placed between 2003 and 2010. 

Socio-demographic and neoplasm data were 

collected, as well as functional status, placement 

(outpatient/inpatient), complications and survival. 

Results: 41 patients were included, with a mean age 

of 63 years [39-90]; 73.2% were women. The main 

tumor was ovarian (26.8%). 

61% of patients had local-regional and metastatic 

cancer, with 12 months from diagnosis as a mean [1- 

44] and Karnofsky Index of 60 (40-100). 

Symptoms before the placement were mainly 

dyspnoea (82.9%), lack of mobility (65.9%) and pain 

(53.7%). 

51% of placements were done as an inpatient. 53.7% 

of patients felt a relief in their symptoms with the 

catheter. 

48.8% of patients had one complication, 12.2% two. 

Those complications were mainly infectious (14.6% 

of patients had a local infection surrounding the area 

where the catheter was placed, 4.9% peritonitis, 7.3% 

sepsis). After the first complication the catheter was 

removed in 5 patients; from those who presented two 

complications, only once the catheter was removed. 

In the sample collected, doing the bivariate analysis, 

no predisposing factors to develop infections have 

been found 

The duration of the catheter was 24 days [2-246] and 

mean patients survival was 31.5 days [2-323]. 

Conclusions: Frequently, complications appear with 

the use of peritoneal catheters for malignant ascites, 

but those complications are mainly mild, and it does 

not involve the catheter replacement in most of cases. 



Restless Legs Syndrome in Palliative Care 

Patients with Cancer 

Satomi E. 1 , Yoshida T. 1 , Azechi M. 1 , Hirotsune H. 1 , Kusuki 

S. 1 , Aono N. 1 , Ueda J. 1 , Oike M. 1 , Matsuyama K. 1 , Inoue 

A. 1 , Tsujinaka T. 1 

1 National Hospital Organization Osaka National 

Hospital, Support Team for Cancer Patients, Osaka, 

Japan 

Background: Restless legs syndrome(RLS) is 

characterized urge to move own body especially legs 

in night and one of the factors of sleep disturbance. a 

National Institutes of Health(NIH) panel modified 

their criteria is 

1. an urge to move the limbs with or without 

sensations 

2. improvement with activity 

3. worsening at rest 

4. worsening in the evening or night 

It causes lack or disfunction of dopamine and it is 

associated to iron deficiency. Prevelence of RLS 

estimates 2~5% of general population in Japan and we 

sometimes experience palliative care cancer patients 

as well as end-stage renal failure patients. But 

unfortunately it is not still underrecognized and 

umdertreated by clinicians and RLS is sometimes 

made a wrong diagnosis as mood disorder. 

Aim: To examine RLS of palliative care cancer 

patients who received hospital palliative care support 

service. 

Methods: Retrospective reviews of cancer patients 

with RLS consulted by palliative care support teams in 

Osaka National Hospital from Nobember 2009 to 

October 2010 and examined about background, 

symptoms, laboratory data, treatment for RLS. 

Results: RLS are 3 cases among 202 cancer patients 

consulted by palliative care team (1.5%) . Male/female 

ratio is 1/2. Primary site of cancer is pancreas, breast, 

uterus and all are advanced disease clinically. All 

patients take ongoing chemotherapy with repeated 

myelosuppression. 2 cases take blood transfusion for 

severe anemia. 2 cases were considered as axiety and 

depressive state and treated by benzodiazepines 

without symptom relief before consultation. All cases 

are treated with anticonvulsant and Fe supplement 

after diagnosed RLS and restless legs got better and 

patients could sleep comfortably. One patients died 3 

weeks later of progression of primary disease and 2 

patients continue chemotherapy in out patients unit. 

Conclusion: Understanding and awareness of RLS 

among clinicians is needed to manage symptoms as 

sleep disturbance in palliative care for cancer patients. 



Indications and Benefits of Blood 

Transfusions in a Hospice Setting 

Yang G.M. 1 , Light D. 1 , Bengtson K.A. 1 

1 St Elizabeth Hospice, Ipswich, United Kingdom 

Aims: Blood transfusions are increasingly used to 

relieve symptoms such as fatigue and shortness of 

breath in the hospice setting. Few studies have looked 

into the benefits of blood transfusions in palliative 

care. The aim of this study is to look at the indications 

and benefits of blood transfusions administered in 

our hospice. 

Methods: Retrospective analysis was done on clinical 

notes of patients who received a blood transfusion in 

the hospice between 1 January and 31 July 2010. 

Results: Between 1 January and 31 July 2010, there 

were 55 blood transfusion episodes in 43 patients. 

Notes were unavailable for 1 patient, therefore data 

was collected on 54 transfusion episodes. 

The mean pre-transfusion haemoglobin was 8.2 

(range 4.2 - 9.7)g/dL. Clinical indications for 

transfusion were: fatigue (23), dyspnoea (14), 

weakness (4), listlessness (2), nausea (2) and low 

platelets (1). 22 out of 54 (40.7%) episodes were done 

for low haemoglobin alone. 

The effect of transfusion on symptoms was assessed in 

26 out of 54 (48.1%) episodes. Of these, there was 

symptomatic benefit in 14 episodes. The symptoms 

which improved were fatigue (7), general well-being 

(7), breathlessness (2) and nausea (1). There was no 

improvement in symptoms in 12 episodes. 


Out of the 43 patients, 15 (34.9%) died within 2 

weeks, none of whom had any improvement in 

symptoms following transfusion. 

Conclusion: A significant proportion of transfusion 

episodes were done for low haemoglobin alone. The 

indication for transfusions in the palliative care 

setting should be focused on symptoms. 

Assessment of symptomatic benefits following 

transfusion can be improved. Where assessed, 

symptoms which improved most frequently were 

fatigue and general well-being. 

Death occurred within 2 weeks for 15 episodes, calling 

to question the appropriateness of transfusion. If it 

was difficult to distinguish whether the symptoms 

were due to anaemia or part of the dying process, a 

trial of transfusion was probably warranted. 



Parenteral Nutrition as Symptom Control - a 

Case Report 

Simanek R. 1 , Hammerl-Ferrari B. 1 , Geissler K. 1 , Watzke 

H. 2 

1 Hietzing Hospital, 5th Medical Dept. with Oncology, 

Vienna, Austria, 2 Medical University of Vienna, Dept. 

of Internal Medicine 1, Palliative Care Unit, Vienna, 

Austria 

Aim: The role of continuous parenteral nutrition in 

patients with an incurable disease is controversial. 

Method: Case report. 

Results: In our patient (male, 82 yrs.) pancreatic 

cancer was firstly diagnosed in March 2009. After 

endoscopic retrograde cholangeopancreatography 

(ERCP) and stentimplantation, 3 cycles of 

gemcitabine and oxaliplatine were administered. 

Chemotherapeutic treatment was limited by 

occurrence of hepatic abscesses after ERCP. Peritoneal 

carcinosis has never been shown in computerized 

tomography. At time of admission at our palliative 

care department in August 2009, the patient 

presented generalized edema, ascites, weakness and 

anorexia. Weight was 70 kilograms (kg). Laboratory 

parameters showed increased inflammation 

parameters, decreased praealbumin, albumin and 

cholinesterase. After port-a-cath implantation 

parenteral antiobotic treatment and parenteral 

nutrition with a three-chamber-bag was started. 

Human-albumin was added for 2 weeks and 

spironolactone was administered. Once, an ascites 

puncture was performed. A mini-mental-stateexamination 

indicated 21 points so that 

antidementive treatment was started. All these 

measures lead to an improvement of the above 

mentioned laboratory parameters, a weight loss of 14 

kg, reduction of ascites and edema and increased 

mobility. The patient was discharged after 19 days 

and stayed at home with parenteral nutrition and 

continous antibiotic treatment until his death in 

December 2009. No episodes of fewer, edema or 

ascites occurred after discharge. 

Conclusion: In the absence of peritoneal carcinosis, 

the genesis of ascites and generalized edema might be 

caused due the inflammatory state and subsequent 

capillary leak syndrome due to hepatic abscesses on 

the one side and malnutrition and subsequent protein 

deficiency, probably hindered by dementia, on the 

other side. Continuous parenteral nutrition and 

antibiotic treatment resulted in an adequate persisting 

symptom control in our patient. 



Physiotherapy Approaches in Pressure Ulcer 

in Palliative Care (Review Article) 

Chaves A. 1 , Lila L. 1 , Pimenta P. 1 , Silva P. 1 , Lima R. 1 , 

Fernandes T. 1 , Molinaro M. 2 

1 Federal Institute of Science and Technology of Rio de 

Janeiro, Rio de Janeiro, Brazil, 2 Federal Institute of 

Science and Technology of Rio de Janeiro and 

National Cancer Institute of Brazil, Professor and 

Physiotherapist, Rio de Janeiro, Brazil 

The pressure ulcer is a localized lesion in the skin and / 

or in tissue or underlying structure, usually over a 

bony prominence, resulting from pressure alone or 

pressure combined with friction and / or shear, and 

unfortunately, is very common in developing 

countries. This study was made by students of 

Physiotherapy to learn more about pressure ulcers 

and help patients in Palliative Care. 

Objective: The aim of this study is to review the role 

of Physiotherapy to prevent and helps in pressure 

ulcers in Palliative Care. 

Method: Systematic published review articles in the 

databases and BIREME SCIELO using the keywords 

pressure ulcers, physiotherapy and palliative care. 

Inclusion criteria were: epidemiological study in 

humans has been published in English, Spanish or 

Portuguese and have been published from 2000 to 

2010. Exclusion criteria were: excluded studies in 

which the use palliative care was integrated with 

drugs. 

Results: Laser, TENS (transcutaneous electrical nerve 

stimulation) and micro-current were techniques 

found literature to improve the pressure ulcer and 

pains caused by it. It was seen that some low-power 

lasers are widely used as therapeutic techniques, in 

order to combat pain conditions and promoting 

acceleration in the healing process. The articles 

showed that TENS is used for pain control, since the 

micro-current, due to its proximity to the biological 

chain, performs work at the cellular level. The 

physiotherapists can improve the quality of life and 

help patients to avoid ulcers with exercises. 

Conclusion: Physical therapy has some techniques 

that can improve palliative care, both in symptoms 

and quality of life, and this new field, many remains 

to be explored and further research should be 

conducted. 



Physiotherapy Approaches in Management of 

Dyspnea in Palliative Care 

Molinaro M. 1 , Fernandes P. 1 


Brazil 

Dyspnea is multifactorial, with physicals and 

psychological factors associated, and a frequent 

symptom in Palliative Care, in advanced stages of 

malignant and non-malignant diseases. The aim of 

this study is to review approaches of Physiotherapy to 

help the interdisciplinary team in management of 

dyspnea, and after this review, create a physiotherapy 

program with non-pharmacological managements of 

dyspnea with patients of a Palliative Care Unit. 

Methods: Literature review of Pubmed and Lilacs, 

with the publication date from 10 years. Keywords 

used: palliative care, neoplasm, physiotherapy and 

dyspnea. Languages selected for the research: 

Portuguese, English, Spanish and French. The criterias 

of inclusion were: original articles, interventionals 

studies, and reviews that were related to cancer 

patients in palliative care. 

Results: This strategy obtained 7 abstracts wich were 

read, and the 7 obeyed the criterias of selection. All 

the articles were in English language. 4 articles were 

review. No article approached children or adolescents. 

The non-pharmacological interventions were: 

breathing retraining, relaxation techniques, activity 

pacing and psychosocial support, techniques of daily 

living, non-invasive positive pressure ventilation, 

traditional physiotherapy techniques, walking aids, 

acupuncture, fan and neuroelectrical muscle 

stimulation. 

Conclusion: It was noticed that nonpharmacological 

strategies improve quality of life of 

cancer patients in palliative care, and the 

physiotherapist can help the interdisciplinary team to 

minimize dyspnea, using these techniques. After this 

review, a protocol about non-pharmacological 

management of dyspnea (as breathing retraining, 

relaxation techniques and non-invasive positive 

pressure ventilation) has been studying to be used by 

physiotherapists of this Institute. 



257 


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Index 

Index 

12th Congress of the European Association for Palliative Care, Lisbon, Portugal, 18–21 May 2011 259 Index

Index 

Index 

A 

Aarsland D. P387,P390,P438,P31 

Aass N. P923,P548,P353,P34,P916 

Abbink K. P929 

Abe P. K. P676,P1048 

Abela J. P669 

Abernethy A. P. P492,P997, 

P678,FC14.5 

Abernethy A. P516,FC5.4 

Abesadze I. P643,P927 

Abidjonova N. P43 

Ablett J. P701 

Abou-Elela E. N. P946 

Abright C. FC2.2 

Abril R. P280 

Acreman S. P910 

Adam J. P999 

Addicot R. P1041 

Addington-Hall J. P842,P4,P1036, 

P825,P696,P190,P5,P810 

Addington-Hall J. M. P271 

Aerts M. PD1.1 

Agar M. P1029,FC5.2,FC6.2,PS2.1 

Agelopoulos N. P1041 

Aggoun A. P261 

Agnelli L. P176 

Aguado E. P9 

Aguayo Canela D.M. P785 

Aguilar J. P824 

Agulló E. P1075 

Ahamed A. P525 

Ahmed N. P1035,P20,P570 

Ahmed Khan M. I. P633 

Ahmedzai S. H. P570,P489,P1047, 

P20,P384,P87,FC6.3 

Ahmedzai S. PS20.5 

Aidarkulova A. P993 

Akbari M.E. P480 

Akhtar-Danesh N. P388 

Aklan N. A. P946 

Akritidou M. P272 

Aktas A. P550,P512,P526,P1066,P535, 

P506,P633,P811,P2,P18 

Alabiso O. P892 

Aladashvili T. P364 

Alam U.A.T. P112 

Alba R. P524 

Albanell N. P373 

Albers G. P435,P10,FC14.4 

Alburquerque E. P657 

Alemany C. P9 

Alencastro I. M.D. P146 

Alex R. P100 

Alford J. P591 

Ali I. P661 

Ali Z. M. P1000 

Ali Z. V. P411 

Alibegashvili T. P397,P643,P364 

Alimena G. P936,P25 

Al-Khashan H. I. P818 

Allan G. P11,P917,P1054 

Allan S. G. P159 

Allcock N. P405 

Allsopp L. P600 

Almeida A. P184,P326,P856 

Almeida J. P278 

Almeida M. C. P451 

Alonso A. P1084 

Alonso A. A. P42 

Alonso Ruiz M.T. P262,P260,PD2.4 

Alonso-Babarro A. P706 

Al-Sabah S. PS24.1 

Alsirafy S. A. P946 

Alsop A. P644 

Alt-Epping B. P930,P642,P508 

Alvarez R. P324 

Álvarez B. P216 

Alves P. P856,P326 

Alves S. P326,P856 

Alvsvåg H. P692 

Amadori D. P1037 

Amaro N. P649,P370 

Amendoeira J. P71 

Ammar D. P931 

Amores X. P843,P850 

An H. P937 

Anagnostou D. P212,P812 

Anania P. P813 

Ancuta C. P174 

Andershed B. P979,P269 

Andrada E. P575 

Andrew E. P712,P163,P708 

Andrew E. V.W. P1013,P839,P837, 

FC4.4,FC4.3,FC4.6 

Andrews P. L. PS22.2 

Andriishyn L. P372 

Ang S. K. P633 

Anna N. PS10.3 

Annweiler B. P840,P682 

Anquinet L. P160,P173 

Antretter B. P951 

Antunes B. P555,FC14.4,PS25.2 

Aono N. P1089 

Aparicio B. P815 

Aparicio M. P775,P280,P1072 

Apolone G. P394,FC6.1 

Appel E. P670 

Aprile A. P892 

Aquilina A. FC3.4 

Arantzamendi M. P511,P630 

Araujo Franco M. P91,P205 

Arber A. A. P675 

Archambault M.-A. P187 

Arenas O. P275 

Arias M.I. P815 

Aristu M. P22 

Arngrimsdottir O. S. P830 

Arnott J. P472,FC2.4 

Aroca J. P314 

Arraras J. P556 

Arseneau L. P872 

Arthur A. P702 

Asada Y. P695 

Asai N. P713 

Asgeirsdottir G. H. P830,P556 

Ásgeirsdóttir G.H. P19 

Ashburn M. A. P843,P850 

Assmann S. J. P358 

Atencia F. P1075 

Atkinson C. P683 

Auth-Eisernitz S. P740 

Axelsson B. P45 

Axtelius V. P482 

Ayton J. FC11.2 

Azechi M. P1089 

Aziz N. P492 

Aznarez M. P22 

Azoulay D. P791 

Azoulay E. FC3.4 

B 

Błudzień J. P817 

Babayan R. P1002 

Babiá C. P9 

Bäckström C. P352 

Baczyk E. P918 

Bader O. P508 

Badosa G. P773 

Baguma A. P1006,P994 

Baguma A. C. FC13.2 

Bailey C. P190,P696 

Bailey C. P. PS24.1 

Bailey S.K. P983 

Bainbridge D. P8,P16,P724 

Baines M. J. PL1.1 

Baio V. P236 

Bajwah S. P316 

Baker N. P820 

Balaji P.D. PD2.7 

Baldry C. P468,P149,P625 

Baldry C. R. P331,P273,P626,P346, 

P281,P874,P664, 

P121,P631,P122 

Ballantine O. P887 

Ballard C. P387,P390 

Ballerini J. G. P33 

Balzer C. P47 

Baqué A. P770 

Baracos V. P571 

Baraghoush A. P852 

Barallat Gimeno E. P541 

Barbarachild Z. PS7.1 

Barbas S. P184 

Barberà Cortada J. P541 

Barbosa A. P778,P711,P101,P362,P620, 

P621,P787,P497,P698,P221 

Barbosa F. P186,P728,P199 

Barbosa V. L. P245 

Barclay S. P866,P900 

Barcons M. P769,P767 

Barnard A. J. P797,P144 

Barnard A. PS5.3 

Barnard S. P880 

Barnes S. P854,P206 

Barnett M. P132 

Barr O. PS1.2 

Barrault M. P70 

Bárrios H. P862 

Barros Pinto A. PS25.2 

Barroso R. P833 

Bartels U. E. P191 

Barthelemy V. P70 

Bartlett J. P678 

Barwich D. P514 

Basch E. P492 

Bashyam V. P583 

Bass M. A. P140 

Basset P. P17 

Bath P. P1035 

Bauer J. P516 

Baumgartner J. P888 

Bausewein C. P557,P549,P821,P1060, 

P1013,P6,P169,P551,P712, 

ME8,FC14.4,FC4.4,PS25.2,PS8.3 

Bayly J. P369,P591 

Baynes S. P747 

Bayo Lozano E. P934,P518 

Bayoll-Serradilla E. P327,P354 

Beary T. P727 

Beas E. P657 

Beas Alba E. P773,P242 

Beattie V. P369 

Beccaro M. P189,P1014,P879,P871 

Bechinger-English D. FC14.4 

Bechtold A. FC14.3 

Becker F. T. P33 

Becker M. P735,P992 

Beguin C. P1001 

Begum M. N. P78 

Behmann M. P457 

Beke D. P846 

Bell R. FC12.1 

Bellali T. P826 

Bellamy G. P901,P844,P222,FC10.4,FC13.4 

Bellora R. P959,P106 

Benalia H. P6,P549,P557,P551,PS25.2,PS8.3 

Benanchi S. P230 

Benarroz M. D.O. P868 

Benevides de Oliveira L.P. T. P235 

Bengtson K. A. P1090 

Benito E. ME13,PS19.2 

Benkel I. P823,P908 

Bennett M. P923,P548,PD1.8,PL2.2, 

P974,PS22.3,FC8.2 

Benoit D. FC3.4 

Benold U. P589 

Benson D. P132,P154 

Benzein E. P979,P269 

Beortegui E. P22 

Berenguer C. P759 

Bergh I. P34 

Berisha L. FC14.3 

Bermejo Mochales E. P324 

Bernadá M. M. P106,P959 

Bernal W. FC10.2 

Bernardo A. P451,PS11.3 

Bernhardson B.-M. P576 

Bernheim J. P691 

Bertram L. P930 


Bescos M. P767,P769 

Betteley A. P121 

Beyer A. P903 

Beyer S. P977,P446 

Beynon T. P800 

Bharadwaj P. P852,P112 

Bhargava R. P537,P1085 

Bhaskar A. P78 

Biennert A. P918 

Bilger U. P616 

Bilsen J. P249,FC4.2,FC9.5 

Bilzen J. PD2.1 

Binnebesel J. PL3.3 

Birch E. P58,PD1.7 

Birch H. P331 

Bird L. P268 

Biró E. P679 

Birring S. S. P316 

Birtar D. M. P420 

Bishop Hand L. P524 

Bisset M. P628 

Bitschnau K. P977 

Bjorndal B. E. P444 

Blagbrough M. E. P53,P567 

Blanco Guerrero M. P79 

Blanco Pascual E. P324 

Blanco Picabia A. P785 

Blanco Toro L. P79 

Blankenburg M. PS9.2 

Blankenstein N. H. P110 

Blanker M. H. P175 

Blasco Amaro J.A. P575 

Blika T. M. P933 

Blinman C. P723 

Bloch-Keunebroek N. P261 

Blum D. P571,P404,FC14.3,FC5.6 

Boçe E. FC5.5 

Boceta Osuna J. P785 

Bochner F. P516 

Boelsbjerg H.B. P304 

Boffi L. P757 

Boland J. P87,P1047 

Bollig G. P257,P256,P637,P670 

Bonilla P. P137,P989,P153,P73 

Bonino Timmermann F. P573,P55,P37, 

P898,P150,PD2.4 

Bono L. P189 

Boogaard J. A. P969 

Booth G. P801 

Booth S. P1060,P821 

Borasio G. D. P642,P425,P807,P780, 

P950,P581,P903,P250,P323, 

P270,P809,P951,FC12.6 

Borasio G.-D. ME10 

Borges P. P649,P370 

Borges T. P856 

Bosse B. P384 

Bossuyt N. P170 

Botelho A. P538 

Botelho O. P370,P649 

Bottler E. M. P915 

Boucher S. J. P429,P426 

Boughey M. P375 

Bourke S. C. P847 

Bour-Kreutz S. P54 

Bousso R. S. P287,P211,P829 

Bovim I.M. P30 

Boyce S. P1068 

Boyd M. P901 

Bozzoni S. P176 

Brabin E. T. P385 

Brabin E. P408 

Brady D. P1047 

Bragança J. P362 

Bragg C. P502 

Bramwell M. P208,P758 

Brandstätter M. P270,P809,FC12.6 

Braun J. P645 

Braz M. P252 

Brazil K. P968,P724,P562,P872 

Brazo L. P216 

Breaden K. PS2.1 

Brearley S. G. P659 

Bredart A. P556 

Brereton L. M. P206 

Brice K. P46 

Brierley J. P419,FC11.4 

Brindle L. P825 

Brine J. FC8.2 

Brinkkemper T. P175,P559,P14 

Britto O.A. D.S. P447 

Brkljacic Zagrovic M. P798 

Broglia R. P892 

Bromberg J. E.C. P391 

Bronnert R. P460,P635,P224, 

P661,P210 

Brooks C. P590 

Brooks D. FC6.4 

Brooks J. P357 

Brown D. P999 

Brown H. P999,FC3.2 

Bruera E. P498,P706,P1053,FC9.3, 

PS18.3,PS22.1 

Bruinsma S. M. P819 

Brummelhuis I. P339 

Brunelli C. P85,FC6.1 

Brunetti G.A. P936,P25 

Bucetti A. P439 

Buchenko A. FC13.3 

Buchwald D. P814 

Buda F. P838 

Bueche D. FC10.3 

Buehler H. P404 

Buentzel H. P283 

Buentzel J. P283 

Buiting H. P308 

Buitrago R. E. P73 

Buitrago R. P989,P153 

Bükki J. P159,P577 

Bull J. P492,FC14.5 

Bullich I. P373,P657 

Bunker E. FC11.6 

Bunn M. P677 

Burge F. P695 

Burgers J. P380 

Buri C. C. P755 

Burke E. P867 

Burki C. P632 

Burko Y. P156 

Burman R. FC10.2 

Burnett J. D. P567,P53 

Burns A. P857,P805 

Burrows L. P636 

Bus A. P678 

Bush S. H. FC1.6 

Bushnaq M. A. PS6.1 

Busquets X. P769,P767 

But L. P577 

Butera J. P786 

Butler C. P910 

Buxton K. P61 

Bye A. P30 

Byrne A. P1012,P1046,P1040 

Byrne S. P747 

C 

Cabo Domínguez R. P55 

Cabo Dominguezl R. P573 

Cabrera M. P1088,P29,P824,P779 

Cachia E. FC6.3 

Cadell S. FC12.2,FC7.4 

Cahill F. P83,P532 

Caja C. P657,P373 

Calanzani N. FC10.6,FC14.4 

Caldeira A. P889 

Callaway M. P458,P46,ME5 

Calsina A. P1088 

Calsina Berna A. P242 

Calsina-Berna A. P899 

Camacho T. P. P875 

Camacho-Lima S. P566,P38 

Cameron S. P. P318 

Camilleri M. P72 

Campanello L. P739 

Campbell C. P333 

Campbell M. P338 

Index 

Campbell S. P408,P385 

Campbell T. P901 

Campion C. P443 

Campos-Calderon C. P1024,P467 

Cañada I. P332 

Cañadas M. P824,P29 

Canal M.J. P247,P244,P777 

Canal Boyero M.J. P243,P774,P240,P241 

Canal Sotelo J. P541 

Canals J. P1070 

Cancian M. P871 

Candriella M. P892 

Candy B. P267 

Cañete J. P297,P770 

Cannell L. P580 

Cantero Sánchez N. P321,P851,FC4.1 

Capelas M. L. P1074,P345,P640,P654, 

P627,P665,P96,P99, 

P127,ME3 

Capelas M. P894 

Capercchione F. P959,P106 

Caplan G. P1029 

Capstick G. P1028,P136 

Caraceni A. 

ME10,P719,P85,P739,P1037, 

P919,P921,FC6.1,PS8.2,PS15.1 

Carafizi N. P376,P906 

Carby J. H. P895 

Cardenas T. P566,P38 

Cárdenas-Turanzas M. P706 

Cardoso A.P. F.Q. P868 

Cardoso J. P743 

Carelse L. P768 

Carneiro R. P914,P939 

Carpentier I. FC6.5,P392 

Carqueja E. P889 

Carr M. E. P444 

Carralero García P. P510 

Carrera C. P1065 

Carreras Barba M. P982,P225 

Carrerou R. P106,P959 

Carretero Lanchas Y. P371,P884,P648 

Carroll C. P206 

Carroll D. P563 

Cartoni C. P936,P25 

Carvajal A. P22,P630 

Carvalho A. S. P258 

Carvalho M. I. P639 

Carvalho R. T. P755 

Casado N. P200 

Caseiro H.I. P124,P752 

Catá E. P413 

Catedra Herreros M.D. P524 

Caulkin R. P491 

Cavalheiro L. P32 

Cawley D. P65,P75 

Ceada Camero J. P666 

Cengic T. P798 

Centenera E. P648 

Centeno C. P511,P1070,P630 

Cepa Nogue R. P524 

Cercos Huguet A.I. P666 

Cernat V. P69 

Cerny T. FC10.3 

Cerqueira M. P251 

Cervek J. P831 

Cervek J. P748 

Cervek M. P748 

Ceschi R. P786 

Ceulemans L. FC14.4 

Chacon E. P200 

Chambaere K. P983,P308,FC9.5 

Champagne M. P864 

Chan D. P320 

Chan W. FC7.4 

Chandorkar S. S. P98 

Chapman L. J. P119 

Charlton S. J. PS24.1 

Chasen M. P1085,P537 

Chaudhuri R. P845,P282 

Chaves A. P1092,P1082 

Chaves A.R. D.M. P295,P792,P284 

Chee E.M.F. P766 


Index 

Index 

Chen H. P220 

Cherny N. I. PS18.1 

Cheung C.C. P768,P181 

Cheung C.-C. P61,P628 

Chiba T. P33,P531,P566,P38 

Chidgey-Clark J. P218 

Chiose M. P376 

Chochinov H. FC3.2 

Choi J.H. P922 

Choi Y.S. P35,P937 

Chow K.Y. P766 

Chukwujekwu A. P583 

Chveztoff G. P579 

Cialkowska-Rysz A. P789,P647 

Cimerman J. P899 

Cipullo R. P234 

Cislaghi G. P739 

Ciucurel C. P1021 

Claessen S.J.J. P771 

Clark D. P46 

Clark J. B. P179 

Clark J. P719 

Clark K. FC8.1 

Claus M. P1061 

Cleary J. F. P458,FC1.2 

Cleeland C. S. P492 

Clement P. P392 

Cleminson A. P887,P56,P368 

Clifford M. P48,P56,P887, 

P368,FC7.6 

Coackley A. P103,P674 

Coackley A.C. P693 

Cobbe S. C. P592 

Cobián Prieto M. P260,P262,PD2.4 

Cockshott Z. P475 

Coelho A. P101 

Coelho A. M. P622,P621,P620 

Coelho P. P326,P856 

Coelho Rodrigues Dixe M.D.A. P381,P15, 

P207,P291 

Cohen J. P453,P998,P837,P983,P1043, 

P587,P170,P690,P878,P610,F 

C14.4,FC4.6,FC9.5,FC9.6 

Cohen R. S. FC2.1 

Coimbra F. P529,P538 

Cole R. P224,P635,P661 

Coles O. P136 

Coleto A. P755,P229 

Collell N. P314 

Collinge W. B. FC7.3 

Collins K. P1035 

Colombani-Claudel S. P70 

Colvin L. A. P3 

Colvin L. P1054,P917,P11 

Condom M.J. P9 

Connaire K. P496,P967,P897,P870 

Connelly I. P887 

Connor S. P142,P896 

Connors S. P1058,P513 

Conroy M. P48,P77,P63,FC7.6,P406 

Constantini A. P556 

Conti Jiménez M. P851,P321,FC4.1 

Conti Wuiloud A. P700 

Contreras N. P1065 

Cook A. P902,P348 

Cook R. M. P747 

Cook S. P202 

Cooke C. P436 

Coombs M. P842 

Cooney M. C. P406 

Corbu A. P420 

Corcoran C. P568 

Cordero A. P184 

Cordero Pérez M. A. P470 

Córdoba P.M. P777,P244,P247 

Córdoba Martínez P.M. P243,P240, 

P774,P241 

Corli O. P394,FC6.1 

Corrales Villar S. P294 

Correa C. D. P146 

Corroon A.-M. P816 

Corroon M. P876 

Cosciug N. P69 

Cosgrave M. PS11.3 

Cosgrove B. J. P870 

Costa A.C. P833 

Costa A. P939 

Costa A. S. P914 

Costa E. P743 

Costa L. P612 

Costa Correia S. P862 

Costa Dias M.J. P564 

Costantini M. P189,P871,P719, 

P1014,P879,P441 

Costa-Requena G. P297,P770 

Coster B. P236 

Cosyns M. PD1.1 

Cotterell P. P825 

Couto G. P889 

Cox K. P268 

Coyne I. P496 

Craig F. P419,FC11.4 

Craig V. P734 

Creedon B. P82 

Crepaldi M.A. P358 

Cristófero Yamashita C. P33 

Cristófol R. P770,P297 

Cronin K. A. P77,P52 

Cruz A. P184 

Cuervo Pinna M.A. P573,P795 

Cullen C. P786 

Curale V. P976 

Curfs L. PS1.3 

Curiale V. ME1 

Currat T. P107,PS27.2 

Currow D. C. P516,P492,FC5.2, 

FC8.1,PS12.1 

Currow D. P1029,P485,FC5.4, 

FC6.2,PS2.1 

Cury P. P566 

Cybis J. B. P108 

Czerwik-Kulpa M. P309,P24 

D 

Da Silva C.H. D. P868 

Daer A. P770 

Dalakishvili S. P972 

Dale J. P900 

Dale O. PD1.4 

Dallo M.D.l.A. P959,P106 

Dall’Orso P. P106,P959 

Damani S. P498 

Damjee A. P891 

Damm E. P482 

Dampier O. FC10.2 

Dand P. P75 

Danis M. P997 

Darnay J. P8 

Darwish M. P1045 

Dastani M. P480 

Datoo F. S. P891 

Daud M. L. P159,P179 

Daveson B. P900,P866,PS20.3, 

P812,P549,P557,P703, 

P551,PS25.2,PS8.3 

Daveson B. A. FC14.4 

Davidescu D. P962 

Davies A. FC6.6,P930,P534,P745 

Davies A. N. P675 

Davies B. FC12.2 

Davila R. P449 

Davis C. L. FC11.2 

Davis M. P1071,P1050,P503,FC8.3 

Davis M. P. P512,P2,P633,P811 

Davis S. E. P1010,P805 

Davis S. P857 

Dawson S. P905,P895 

Day R. P521 

Ddungu H. P1003 

De Andrés Colsa R. P152 

De Graaff F. P684 

De Graeff A. P1051 

De Klerk C. P515 

De Koninck J. P985,P859,P86 

De la Cruz M. P498,P1053 

De la Hera C. P22 

De la Rosa A. P706,FC9.3 

De Leeuw W. P130 

De Lepeleire J. PD1.1 

De Lima L. P706,P995,FC9.3, 

PL4.4,PS16.2 

De Luis V. J. P815 

De Luis Molero V. J. P227,P761 

De Lust A.-M. P289 

De Menezes M. D.R. P447,P980,P861 

De Miguel-Sánchez C. P350 

De Nijs E. J.M. P102 

De Oliveira T.C. P792 

De Raaf J. P515 

De Renzie Brett H. P644 

De Santiago A. P200 

De Schutter H. FC6.5 

De Simone G. G. P646 

De Simone G. P1065,P138,P719, 

P786,P759 

De Souza A. N.L. P295,P792 

De Vocht H. M. FC2.6 

De Vos V. P86,P859,P985 

De Walden-Galuszko K. PS23.3 

De Wolf-Linder S. P404,P1042, 

FC14.3,FC5.6 

Deblas Sandoval A. P510 

Debourdeau P. P751,P579 

Decruyenaere J. FC3.4 

Deeming E. P603,P725,P880, 

P641,P340 

DeKeyser F. FC3.4 

Dekkers A. P195 

Del Gaudio F. FC12.1 

Delalibera M. P622,P620,P621,P101 

Delgado Z. P324 

Delgado Gil M. M. P934,P940 

Delgado Guay M. P1053 

Deliens L. P167,P771,P1043,P694,P435, 

P249,P14,P559,P983,P160, 

P691,P308,P878,P690,P170, 

P587,P10,P438,P610,P173, 

P110,FC14.4,FC4.2,FC9.6, 

FC9.5,PS20.6,PS25.2 

Della Corte F. P892 

Delmar C. P814 

Delorme C. P931 

Demoulin L. PS21.3 

Dengra J. P1064 

Deprest Y. P86 

Depuydt P. FC3.4 

Dequidt D. P608 

Déramé L. P560 

Derycke N. PS25.2 

Deschepper R. P249,P308,P691,FC4.2 

Deschutter H. P392 

Deskur-Smielecka E. P918 

Desmedt M. P1001 

Devery K. PS2.1 

Deveugele M. P1001,P292,P437 

Devi A. P766 

Devos R. P608 

Dewar S. P1041 

DeWolf-Linder S. P571 

Di Castiglione J. A. P567,P53,P681 

Di Leo S. P189,P1014 

Di Mauro P. P176 

Dias M. P775 

Díaz A. P824,P29,P332 

Díaz Díez F. P262,P573,P150, 

P898,P37,P55 

Diaz Sánchez R. P534,P745 

Diaz Santos M. P91,P205 

Díaz Vivas E. P1079 

Díaz-Albo B. P779 

Díaz-Albo E. P779 

Dickman A. P611,P159,P179 

Die Trill M. L. PS23.2 

Diemer W. P474 

Dietz I. P642,P581 

Diez D. L. P97 

Diez L. L. P42 

Diez-Porras L. P94 

Diez-Porres L. P1084 


Dighe M. P. P98 

Dighe M. PD2.7 

Dillen L. P289,PD1.1 

Dillon A. P313 

Dilnot B. P355 

Dix O. FC13.1 

Dixe M.D.A. P296,P285 

Dixon R. E. P436 

Do Amaral J. B. P447,P980,P861 

Dobríková P. P336,P365 

Dobrina R. P183 

Dodds N. G.J. PS7.2 

Dogan S. P513,P1058 

Doherty J. P584 

Domeisen F. P502,P179,FC3.5 

Dominguez Cruz A. P884,P371,P648 

Dominguez Rodriguez M. P518,P940, 

P594 

Dominica F. PS13.4 

Donaldson A. P866,P900 

Donaldson K. P999 

Dondeyne M. P952 

Donea D.O. PL4.2 

Donea O. P116,P151 

Dones M. P815 

Dones Sánchez M. P227 

Donis Barber L. D. P534 

Donker G.A. P771 

Donkers E. C. P464 

Donohoe D. P448 

Doran A. P313 

Doran S. P723 

Dos Santos B.M. C. P447 

Dos Santos Gomes S. P1065 

Doucet H. P187 

Downing J. P312,P703,P549,P557, 

P6,P716,FC14.4 

Downs F. M. P338 

Dowson J. K. P736 

Dowson J. P590 

Doyle C. P298 

Doyle R. P119 

Doz A. P314 

Dracea L. P962 

Dragani T. A. P85 

Drake R. P1041,P1010,P267 

Draper B. P1029 

Dreyer P. P322 

Driscoll P. P140 

Droney J. P118 

Druchinina A. FC13.3 

Du Toit C. P226,P797 

Duba J. P396 

Duberg M. P944 

Ducloux D. P528 

Duke S. FC11.2 

Dumitrescu M. FC14.1 

Dumont C. P236 

Dunn J. P731,P386 

D’Urbano E. P138,P646 

Duro-Martínez J. C. P350 

Dutra J. M. P377 

Duval M. P187 

Dziegielewska S. P858,P442 

Dzotsenidze P. P397,P927 

E 

Ebert Moltara M. P748 

Echteld M.A. P771 

Eckerdal G. FC9.1 

Eckermann S. P1029,P516,FC6.2 

Edgar S. P605 

Edison L. P723 

Edmonds P. P305 

Edra N. P743 

Edwards D. P674 

Efficace F. P556,P25 

Eftimova B. P709 

Eggenberger E. P445,P974 

Eisenchlas J. H. P995 

Eisenchlas J. FC9.3,PS16.4 

Ekholm E. P908 

Ela S. P657 

Elias T. P373 

Eliasziw M. P921,P919 

Elizalde M. A. P216 

Ellershaw J. P602,P611,FC3.5 

Ellershaw J. E. P736,P590,P74,P1031, 

P209,PS20.4,P719 

Ellingsen S. P692 

El-Mesidi S. M. P946 

El-Sheikh A. M. P818 

El-Sherief W. A. P946 

Elsner F. P930,P47,P642 

Elvira M.J. P815 

Elvira de la Morena M.J. P324 

Emms H. P602 

Engels Y. P380,P929,P334,P341,FC13.6, 

FC7.2,PS20.5,PS25.4,PS5.1 

Englund F. P734 

Epiphaniou E. P866,P900,P800, 

P804,P218 

Ericson A. P352 

Ericson K. P352 

Eriksson A.-C. P352 

Erlach-Stickler G. P981 

Ernstmann N. P13 

Escobar Pinzon L.C. P1061 

Espinosa J. P657,P373 

Espinosa Rojas J. P242 

Espinosa Val C. P297 

Espinosa-Rojas J. P773,P899 

Essani R. R. P891 

Ester A. P637 

Esteves C. P558 

Estévez A. P786 

Eulitz N. FC11.5 

Evans A. P498 

Evans C. J. P499 

Evans C. FC5.3 

Evans J. P1026 

Evans N. P708,P163,P712,P1013,P837, 

P839,FC4.4,FC4.6,FC4.3 

Ewers M. P655 

Ewing G. P801 

Exiara T. P272,P471 

Expósito López A. P841 

Eyjolfsdottir S. P461 

Ezer T. P204 

F 

Fahlström M. P290 

Fainsinger R. L. P916,PS12.3 

Fairclough D. P492 

Faksvåg Haugen D. PS20.2,PS25.1 

Fallah R. P480 

Fallon M. T. P836,P299,P554,P3 

Fallon M. P89,P11,P917,P1054,FC6.4 

Falvella F. S. P85 

Faria R.J. M. P36 

Faria S. O. P566,P38 

Fariñas O. P238 

Fariñas-Balaguer O. P253 

Farrance D. P602 

Farriols C. P1064 

Fazekas B. P485,FC5.4,FC6.2 

Fazio Tirrozzo M.G. P738 

Fearon K. P571 

Federico V. P25 

Fegg M. P951,P270,FC12.6 

Fegg M.J. P809 

Feijão Rodrigues C.P. P564 

Feiler M. FC14.6 

Feio M. P529,P538,P184 

Fercher P. P981 

Ferdinandy N. P749 

Ferguson L. P338 

Fernandes A. F. P912 

Fernandes P. P558,P403,P500,P1093 

Fernandes T. P1082,P1092 

Fernández D. P138,P646 

Fernández G. P106,P959 

Fernández S. P815 

Fernandez Cordero M. J. P518 

Fernández Cordero M. P594 

Fernández-Sánchez M. L. P354 

Index 

Ferrández O. P1064 

Ferraz Gonçalves J. P184,P743 

Ferreira A. M. P912 

Ferreira C. P370,P649 

Ferreira C. M. P889 

Ferreira E. P959 

Ferreira F. G. P229 

Ferreira J. P862 

Ferreira L. M. P229,P755 

Ferreira M.D.F. P558 

Ferreira M. P939,P914 

Ferreira P. L. P32,P555,FC14.4 

Ferris F. D. P105,P129,P114,FC13.5 

Fialho R. S. P251 

Fierro G. P959 

Fife S. PD2.3 

Figueirinhas Â. M. P451 

Filbet M. FC6.4,P931,P579,P751 

Filip S. P232,P248 

Fillol A. P413 

Fineberg I. C. P663,FC3.1 

Finek O. P396 

Finetti S. FC14.4 

Finlay I. P1046,P1040,PS14.2,PS26.1 

Finnegan C. P454,PD1.6 

Firth J. P356 

Firth P. H. ME6,PS10.1 

Firth P. ME12 

Fisch M. P401 

Fisher J. P172,P198 

Fisher T. P389 

Fiusa T. P264 

Fladvad T. P85 

Flaherty G. P155 

Fleming J. S. P51 

Fleming J. P586,P82,P65,P1030 

Flodin G. P614 

Flor de Lima M.T. P649,P370 

Flores R. P1074,P345,P654,P127, 

P99,P96,P665,P627,P640 

Flowerdew G. P695 

Fogen F. P54 

Foley K. P46 

Folprecht G. P925 

Fonseca A. M. P258 

Fonseca J. P984,P966 

Fonseca N. P451 

Forbes K. P303 

Forcano S. P1075 

Forman A. P401 

Forné M.T. B. P913 

Forsythe A. P702 

Fortunato E. M. P245 

Fossum B. P21 

Foster C. P825 

Foulds G. P87 

Foulkes M. P103 

Fountain A. P600,P674 

Fowell A. P1046,P1040 

Fowler R. P997 

Fowler-Johnson S. P590 

Fradique E. P39,P251,P604 

Fradsham S. P580 

Fraile J.M. P1084 

Frame J. P203 

Frame K. P776 

Francis B. FC3.1 

Francis M. P181 

Francke A. P438 

Francke A. L. P587,P684,P771 

Freiherr von Hornstein W. P616,P530 

Frey R. P901 

Fridriksdottir N. P461 

Froggatt K. P1028,P1049,P136,P435 

Frooninckx B. P952 

Frota A. P1069 

Frymark U. P139 

Führer M. P950,P425,P951 

Fujisawa Y. P424 

Fukumura K. P613 

Fulton S. P498 

Fürst C.J. P159,P179,P482,P45, 

P21,P1032,PL3.2 


Index 

Index 

G 

Gabarda X. P9 

Gabriel T. F. P234 

Gabunia M. P69 

Gaertner J. P507 

Gage A. P768 

Gakhal S. P635,P224,P210,P132 

Gakunga R. P411 

Galal K. M. P946 

Galbraith S. P1019 

Gale S. P517,P582,P360 

Galesloot C. P343 

Gallagher R. M. P725 

Gallegos D. P9 

Gallighan N. P883 

Galsuhko M. P502 

Galushko M. P13,P701,FC3.5 

Galvan A. P85 

Galvez R. FC6.4 

Galvez Mateos R. P524 

Galvez-Lopez R. P467 

Gama G. P728,P186,P199 

Gambles M. P74,P590,P736 

Gambles M. A. P1031 

Gamboa Antiñolo F. P27 

Gamondi C. P76,P107,PS27.2 

Gándara del Castillo A. P575 

Garchakova A. G. PS13.2 

Garcia H. O. P431 

Garcia R. P29,P824 

Garcia Garcia J. P1079 

Garcia Navarro E.B. P91,P205 

Garcia Navarro S. P205,P91 

García Raya S. P534 

Garcia-Baquero Merino M.T. P350,P575, 

P884,P152,P371,P648 

Garcia-Caro M. P. P1024 

García-García J. A. P354,P327 

Gardiner C. P206,P222,P328, 

P383,P854,FC13.4 

Gardner D. P617 

Garnier P.-H. FC1.4 

Gartner V. P1055 

Garzón C. P1078 

Garzón Rodriguez C. P407 

Gastmans C. P712 

Gatti A. FC6.4 

Gaudet A. P968,P872,P562 

Gaunt K. P874,P273,P591,P122 

Gaunt K. E. P600 

Gauvin F. P187 

Geijteman E. C.T. FC3.3 

Geissler K. P589,P1091 

George R. P800 

Georgescu L. I. P1021 

Geovanini F.C. M. P146,P252,P484 

Gérat-Muller V. P70 

Gerlich M. G. PD1.5 

Germ R. P414,P422,P431 

Geurs F. J. P985,P859,P86 

Gherardi C. P786 

Gianezeli A. P. P980,P861,P447 

Gibson G. J. P847 

Gidaris E. P471,P272 

Giesen-Nijenhuis C. P126 

Gikaara N. P703,P716 

Gil J. P32 

Gil O.T. P815 

Gill J. P582 

Gilson A. M. FC1.2 

Gimeno V. P1075 

Giordano A. P106 

Giordano M. P1014 

Glaetzer K. FC11.3 

Glare P. P516 

Gleeson A. PD2.2,P109,P867 

Gleeson A. B. FC8.4 

Globkpor A. FC14.5 

Glockzin G. P915 

Goddard C. P1018 

Godfrey S. P636 

Godolt N. P671 

Gogou P. P1057 

Goh C. R. P766 

Goh C. PS2.1 

Goh G. P279,P213 

Gollo G. P1014 

Golzari M. P480 

Gomas J.-M. P12 

Gomes B. P703,FC10.6,FC14.4,PS25.2 

Gomes L. C. P367,P377 

Gómez A. P332 

Gómez X. P657 

Gómez Enrich N. P841 

Gomez Martin P. P225,P982 

Gomez-Batiste X. P238,P712,PS20.5, 

P773,P242,P373,P899 

Gomez-Chica A. P1024 

Gonçalves E. M. P889 

Gonçalves J. P939,P743,P914 

Gontier J. P668 

Gonzalez M.P. P657 

Gonzalez M. P481,P247,P244,P777 

Gonzalez T. W. P137 

González E. P106,P959 

González Barboteo J. P407 

Gonzalez -Barón M. P42 

González Cañamero P. P79 

Gonzalez Pedraza A. P449 

Gonzalez Prieto M. P243,P241,P774,P240 

González-Barboteo J. P899 

Goodhead A. F. P619 

Goodhead A. P450,P904,P742 

Goodwin D. P488 

Gootjes J. R. P559,P14 

Gootjes J.R.G. P533 

Gorog I. PD1.2,P145 

Gorska H. P309 

Gorzelińska L. P1086 

Gorzelinska L. P918,P667 

Gott M. P854,P901,P206,P844,P222, 

P328,P383,FC10.4,FC13.4 

Gottwald L. P789 

Gough N. P59 

Gough S. P330 

Gouliamos A. P1057,P1087 

Govan K. B. P1053 

Gove D. PS11.3 

Grabowski T. P918 

Grady A. P902 

Graeff de A. P1052 

Graf B. M. P191,P915 

Grance G. P786,P646,P1065,P138 

Grande G. P801,P499,FC2.4 

Grande G. E. P472 

Grandpierre L. P54 

Grangé V. P931 

Grant E. P493 

Grant K. P385,P408 

Grantham S.J. P324 

Grasser M. P425 

Grassi L. PS23.4 

Gratwohl F. P404 

Gravelle D. P537 

Grebe C. P589 

Greco M.T. P394 

Green B. P1028 

Greenham A. P747 

Greenwood A. P487,P990 

Greeves K. FC11.3 

Gregoriń B. P748 

Gregory A. L. P607 

Gretton K. P734 

Gretton S. K. P118 

Grevbo T.J. P255 

Griffiths A. P693,P103 

Griffiths D. L. P162 

Grijalva M.G. P449 

Grimau I. P1088 

Grinyer A. E. P788 

Groenewoud S. PS21.2 

Groot M. P341,FC7.2,PS5.1 

Gröschel C. P670 

Gross U. P508 

Groves K. E. P641,P631,P122,P340, 

P880,P677,P603,P725,P664, 

P454,P626,P273,P331,P737, 

P714,P672,P874,P625, 

P468,P149,PD1.6 

Gruber W. P670 

Grunfeld E. P695 

Grypdonck M. P28,P437,P292 

Guardamagna V. A. P941,P193,P505, 

P909,P1063,P744 

Gudlaugsdottir G. J. P830 

Gudmannsdottir G. D. P599 

Gudmundsdottir G. P830 

Guedes A. P280 

Guedes A. F. P640,P345,P654,P627, 

P665,P96,P99,P127 

Güell E. P238,P253 

Guerin M. P369 

Guerreiro I. PS21.4 

Guevara Méndez S. P851,FC4.1 

Guillén S. P959 

Guisado H. P560 

Gunaratnam Y. P712 

Gunnarsdóttir S. P19 

GunnClark N. P1073 

Guo Y. P401 

Gutgsell T. P633 

Gvamichava R. P927 

Gwyther L. P318,PL4.1,PS14.3 

Gysels M. H. P712,FC5.3,FC8.6 

Gysels M. P163,P708,P438,P808,P802, 

P1056,P839,P837,P7,P716,P1013, 

P821,P1060,FC1.1,FC14.4,FC4.6, 

FC4.4,FC4.3,PS25.2 

H 

Hadjistavropoulos T. P388 

Hafeez H. P128 

Hagen N. P919,P921 

Hager K. PD1.5 

Hahnen M.-C. P519 

Haig S. FC11.2 

Hait B. P1016,P881 

Hale J. P702 

Halfdanardottir S. I. P830,P599 

Hall S. P1018,P441,P10, 

FC10.6,FC14.4,P333 

Hallgren L. P139 

Halpin D. P854 

Hamilton B. J. P942 

Hammerl-Ferrari B. P1055,P1091 

Hampton-Mathews J. P103 

Hanada R. P938,P523 

Hanekop G. G. P191 

Hanks G. W. PS15.1 

Hannon B. L. P949 

Hansen S. B. P353 

Hanson L. P492 

Hansson A. P652 

Harding R. P312,P499,P549,P557,P7,P716, 

P6,P1013,P866,P900,P837,P839, 

P10,P218,P551,P800,P708, 

P163,P712,P804,P703,P555, 

FC1.1,FC14.4,FC2.5,FC4.4,FC4.6, 

FC4.3,PD1.3,PS20.3,PS25.2 

Hardman-Smith J. P436 

Hardy B. P356 

Hardy J. P485,FC5.2,FC5.4,FC6.2 

Harris R. P882 

Harrison S. P601 

Harrison Dening K. P434 

Hartley N. A. P742,P904,P450 

Hartog den A. P374 

Hashimoto T. P945 

Hashizume T. P943 

Hasselaar J. P1022,FC13.6,PS20.5 

Hasselkvist B. P322 

Hassman D. P398 

Haugen D. F. P921,P919,FC14.4 

Haugen D. PS8.2 

Hauke G. FC12.6 

Hauser J. P492 

Hauser K. P811,P2 

Håvard Loge J. PS25.1 

Hawley P. H. P514 


Haworth G. P89 

Hayashi A. P542 

Hayes D. P82 

Heals D. P157,P644 

Healy M. P92 

Hearn F. P171 

Hegarty M. PS19.3,PS2.1 

Hegedus K. ME5,P117,FC2.3 

Heijnen R. P929 

Heilmeier B. P903 

Heimerl K. P445,P259,P981,P974,FC14.6 

Hekster Y. P929,P380 

Heller A. P286,P670 

Hemming L.J. P727 

Hemsley J. P415,P419 

Hemsworth D. FC12.2,FC7.4 

Henderson G. PS24.1 

Henriksson A. P269 

Henriques C. P862 

Henry A. P1055 

Henry E. P786 

Hensler M. P1077,P849 

Henson L. P65,P1030 

Henson M. P352 

Hepford K. P204 

Hermans F. PD1.1 

Hermel M. P781 

Hernandez M. P706 

Hernández Ajenjo M. P407 

Hernández García P. P79 

Hernández Morantes O.L. P913 

Herrero A. P9 

Hershko H. P156 

Hertogh C. M. P793 

Hertogh C. P438 

Hesselmann G. M. P1052 

Hewitt J. P453 

Hidalgo M. P137 

Higashiguchi T. P1067 

Higginson I. P708,P703,P800,P555, 

P839,P866,P900,P6,P716, 

P1013,P212,P812,FC4.4 

Higginson I. J. P163,P712,P279,P551, 

P1056,P802,P808,P316,P1018, 

P441,P305,P282,P837,P845,P557, 

P549,P213,P7,P553,P1060, 

P821,FC1.1,FC10.2,FC10.6, 

FC14.4,FC4.3,FC4.6,FC5.3,FC8.6, 

PS17.1,PS20.3,PS8.2,PS8.3 

Higginson I. H. P499 

Higginson I.J. PS25.2 

Higuchi Y. P141 

Hildebrandt J. P642 

Hill J. P355 

Hill V. P999 

Hirotsune H. P1089 

Hjermstad M. J. P34,P919,P921, 

P916,P923,P548,P353 

Hjermstad M.J. P30 

Hladschik-Kermer B. P873 

Hockley J. M. P165,PS11.2 

Hockley J. P606,ME1 

Hodson M. P1047 

Hoefler J. P685 

Hoenger C. P107,P863,P147,P632 

Hoengger C. PS27.2 

Hofmann S. P877 

Hogan M. P816 

Hojo M. P613 

Holguin-Licón M. P680,P153,P989, 

P449,P73,P623 

Holmerova I. PS11.3 

Holmes J. P869 

Hong C.Y. P766 

Hong S.H. P922 

Hong Y.S. P922 

Hood K. P1026 

Hooijdonk C. P1052 

Hopkins K. P805,P857 

Hopkins P. FC10.2 

Hopkinson J. P825 

Hopkinson J. B. P271 

Hopp M. P384 

Horak E. FC11.6 

Horeica R. P174 

Horlait M. P985,P859,P86 

Hornby K. P78 

Horne G. P463 

Horton P. G. P947 

Horvat M. P748 

Hoste V. P608 

Hoti V. FC3.1 

Hotopf M. P499 

Hough J. P468,P737,P714,P625,P672 

Hough L. P181,P596 

Houttekier D. P170,P690 

Howard M. P893,P568,P81 

Howard M. B. P109 

Howarth S.H. P693 

Howell J. P944,P398 

Howie E. P999 

Hoyos Miranda F.R. P510 

Hreidarsdottir I. P830 

Hudson L. P997 

Hudson P. FC7.5 

Huerta Cebrián S.A. P534 

Hugel H. P740,P580 

Hughes K. FC11.3 

Hughes O. P763 

Hughes P. P383,P1035 

Hui D. P498,P1053 

Hui V.K.-Y. P696,P190 

Hullihen B. P526,P550 

Hultkvist S. P100 

Humbert N. P187 

Hunt K. P4,P1036 

Hunter M. D. FC6.3 

Hurlow A. FC8.2 

Husband J. P348 

Husbands E. P723 

Husebo B. S. P40,P31,P387, 

P390,P438 

Husebo S. B. P438 

Husebo S. P712 

Hussain I. P208,P758 

Hutchison T. P111 

Hutton S. P722,P628 

Huygen F. J.P.M. P391 

Hylen Ranhoff A. P438 

I 

Ibáñez del Prado C. P534,P745 

Ibarra C. C. P97 

Ibrar M. P891 

Iconaru I. E. P1021 

Igazzini J. P1014 

Ilse B. P642 

Imler I. PD2.1 

Induru R. R. P633 

Ingelberts A. P952 

Ingleton C. P1033,P222,P383,P328, 

P206,FC13.4,FC14.2 

Inoue A. P1089 

Inoue T. P410 

Irazábal I. P815 

Irwin S. A. P164 

Isac V. P130 

Isherwood R. J. P11,P1054,P917 

Ishikawa N. P500,P403 

Israel F. FC11.3 

Ivanetiń M. P748 

Ivanovska M. P233 

Iversen P.O. P30 

Iwasaki T. P713 

Iwase S. P943 

J 

Jack B. P331,P273,P714,P737,P874,P493 

Jacks D. P1028,P136 

Jakrzewska-Sawińska A. P858 

Jakus N. P679 

Jamal H. P1068,P180,P582,P517 

James L. P944 

Janiszewska J. P817,P658 

Jansen S. PS11.3 

Jansen W. J. P464,P374 

Index 

Janssen M. P289 

Jantzen A. P671 

Jarosz J. P494,P24,P309 

Jaspers B. P992,P735,FC13.6,PS20.5 

Jatoi A. P516 

Jenkin P. FC11.3 

Jenkins D. P683 

Jennings V. P949 

Jensen Hjermstad M. PS25.1 

Jespersen B. A. P1081 

Jespersen T. W. P1081 

Jeyakumar J. P65,P1030 

Jiménez Cortés R. P534 

Jiménez Noguero A. P534 

Jiménez Vilchez A. P541 

Jin A.Z. P766 

Joao-Lobao M. P779 

Joares A. P770 

Johansson H. P479 

Johnny L. P602 

Johnson J. P360 

Johnson M. P1026 

Johnson N. P125 

Johnson S. P125,P857 

Johnson W. P1028 

Johnston B. M. P1,FC3.2 

Johnston G. P695,P198 

Johnston G. M. P172,FC11.1 

Johnston S. P805 

Johnstone R. P1046 

Jonas B. P873 

Jones D. P591 

Jones H. M. P804,FC2.5 

Jones L. P805,P1041,P434,P267,P1010, 

P857,P469,P320,FC3.6 

Jones T. P672 

Jong M. A.C. FC3.3 

Jonsdottir A. P461 

Jonsson J. E. P461 

Jordan J. FC12.3 

Jordão A.T. P370,P649 

Jorge M. P502 

Jørgensen B. E. P958 

Jose Moreno G. P745,P534 

Joshi M. P917,P11,P1054 

Jovmir V. P69 

Jox R. J. P323,P250,P581, 

P780,P807,PL1.2 

Judson I. P59 

Julian Caballero M.M. P898 

Julian Caballero M. P573,P55,P37 

Julião M. P711,P778 

Jull A. P901 

Jung H.H. P35 

Jung K. P508 

Jünger S. P990,P487,P457,ME5, 

ME14,PS20.1 

Junin M. P759 

Jurado Martín M.A. P510 

K 

Kaasa S. P85,P923,P548,P916,P919, 

P921,ME11,P571,FC6.1,PD1.4, 

PS12.2,PS15.1,PS20.2, 

PS25.1,PS25.2,PS8.2 

Kaasalainen S. P562,P872,P388,P920 

Kabani M. S. P891 

Kabelka L. P396,P978,P185,P366 

Kabeshita Y. P544 

Kamal A. H. FC14.5 

Kane P. P44,P638 

Kaneko N. P713 

Kanemura S. P539 

Karafa M. P1071 

Karafa M. T. P550,P18,P2,P811, 

P633,P535 

Karapetyan H. P142 

Karbelashvili T. P927 

Karlsson M. FC9.2 

Karwowska K. P1086 

Kassalainen S. P968 

Kathleen B. FC8.5 

Kathuria B. P63 


Index 

Index 

Kaufmann H. P873 

Kawahara H. P957 

Kawahara R. P938,P523,P543 

Kawecki A. P932 

Kazanjian A. FC7.4 

Kazmierczak-Lukaszewicz S. P789 

Kean H. P611 

Kearney M. PL3.1 

Kearney N. P1 

Kehoe M. P51 

Keirse E. P1001 

Keirse M. PD1.1 

Kelley M.L. P872,P562,P968 

Kelly B. P768 

Kelly E. PS24.1 

Kelly J. P338 

Kelly S. P568 

Kemp L. P686 

Kemp R. P999 

Kemple M. E. P656 

Kendall M. P600 

Kenneally N. P887 

Kennedy N. P592 

Kennedy S. M. P268 

Kenny R.A. P1027,P92,P93,FC8.5 

Keogh C. P313 

Kerkhof A. J. P717 

Kessler A. PD2.5 

Kevin B. P8 

Kezeli T. P643 

Khan S. A. P330 

Khan Yousufzai N. P891 

Kidd H. PS7.1 

Kiely F. G. PD2.6 

Kierner K. A. P168,P846 

Kierner K. K. P1055 

Kiknadze N. P204 

Kikule E. P312 

Kilersjö A. P352 

Kim C.S. P922 

Kim S.Y. P922,P922,P937 

Kiman R. J. P646,P700 

Kimani G. G. P104 

King C. P735 

King M. P469,P267,P434 

King M. B. P1010 

King N. P583,P356,P357 

Kinley J. P606 

Kiragga A. P312 

Kirk L. P514 

Kirkova J. P1071,P1050, 

P1066,P18,P512 

Kisiel-Sajewicz K. P503 

Kissane D. W. FC12.1 

Kiyange F. PS7.4 

Klarare A. P21 

Klein C. P877 

Klein J. P577 

Klepstad P. FC6.1,P916,P85 

Klindtworth K. PD1.5 

Klinger C. P896 

Klose J. ME5 

Kluziak M. P667 

Knight A. P389 

Knudsen A.K. P916,P85,FC6.1 

Ko D. P492 

Kobayashi K. P556 

Koffman J. P839,P305,FC10.2, 

FC10.6,FC14.4 

Kögler M. P951,P809,P270,FC12.6 

Koguchi K. P399 

Koh S.J. P937 

Kokubun H. P613 

Koleci G. P911 

Kolflaath J. P353 

Konkolÿ Thege B. P117 

Konstantis A. P471,P272 

Kopecký J. P248,P232 

Kopf A. P642 

Koppenol C. P955 

Kordzaia D. P927,P643,P397, 

P972,P364 

Kotenko G. FC13.3 

Kotlińska A. P667,P1086 

Kotlinska-Lemieszek A. P918 

Kouwenhoven P. S.C. P689 

Kouwenhoven P. S. P302 

Koyama Y. P399 

Kozak J. P396 

Kozak L. FC7.3 

Krajnik M. PD2.8 

Krakauer E. L. PS2.3 

Krakowiak P. PL3.3 

Krakowski I. P931 

Kramer M. P925 

Krattenmacher T. P274 

Kremeike K. FC11.5 

Kremers W. P384 

Kristoffersen K. P692 

Križanová K. P365 

Krmoyan S. P650,P1002 

Krueger P. P724 

Kruse S. P425 

Krzyzanowski D. PL3.3 

Kudzia M. P858,P442 

Kuehlmeyer K. P780,P807 

Kühlmeyer K. P323 

Kühnbach R. P821,P1060 

Kühne F. P274 

Kumakura Y. P544,P410,P1076 

Kumar A. P405 

Kum-Taucher B. P1055 

Kunzmann C. P950 

Kurbonbekova Z. P43 

Kurita G. P. P520 

Kusuki S. P1089 

Kutner J. S. P492 

Kutten B. P1001 

Kvalem I. L. P34 

Kyffin M. P1028 

L 

Lacasta M. P1084 

Lacasta Reverte L. M.A. P94 

Lacasta Reverte M. A. P470 

Lacasta-Reverte M.A. M.A. P42 

Lacasta-Reverte R. M.A. P97 

Lacey A. P60 

Laddie J. P419 

Lagman R. P633,P811,P2,P1071 

Laird B. J. P299,P836 

Laird B. P89,P385,P408 

Laird B. J.A. P554,P3 

Lakicevic J. P1005 

Laking G. P901 

Lancho Moreno M.P. P534 

Lane J. P883 

Lang U. P877 

Langkilde L. P806 

Lansdell J. P133 

Laranjeira A. P558 

Larkin P. J. FC8.4,PS19.1 

Larumbe A. P630,P1070 

Lascar E. P423,P481 

Laska I. P911 

Laske A. P474,P642 

Laske C. P474 

Lasmarías C. P373,P657 

Lassen C. L. P191,P915 

Latten R. P600,P602 

Latten R. J. P209 

Lawless S. P276 

Lawlor P. P213,P1029 

Lawlor P. G. P92,P93,P1027,FC8.5 

Lawson B. P695 

Lawton S. P563 

Lazar A. P151,P116 

Lazar F. P116,P151 

Lazarova B. P709 

Le Grand S. P811,P633 

Le Pera V. P106,P959 

Leach C. P440 

Leahy A. D. P601 

Leckey Y. P298 

Lecour H. P860 

Lee A. P1015 

Lee S. P329 

Leemans K. P587,P1043 

Leget C. P796,ME13 

Legg M. PS2.1 

Leigh N. P845,P553 

Leigh N. P. P282 

Lejcko J. P396 

Leng M. P731,P386,PD1.3 

Leng M. E.F. P996,P493 

Lenneras B. P944 

Leonard S. FC10.2 

Léonard C. P1001 

Leppert W. P789,P570,PS20.5 

Lester L. P57,P586 

Let D. P1043 

Lethbridge L. P172 

Leurent B. P267,P469 

Leveälahti H. P143 

Lévy-Soussan M. M. P791 

Lewenhaupt C. P482 

Lewington J. PD1.3 

Lewis P. P499 

Leysen B. P853 

Li Y. FC12.1 

Liben S. FC12.2 

Lichodziejewska - Niemierko M. P817,P658 

Lieth M. P80 

Light D. P1090 

Lila L. P1082,P1092 

Lima M. H.H. P246 

Lima R. P1082,P1092 

Lima R. A.G. P428 

Lima R. G. P108,P432,P960 

Limoges J. PD1.3 

Limonero J.T. P478,P275 

Lin C.-C. P726 

Lindner D. P697,FC7.1 

Lindquist O. FC3.5 

Lindqvist E. P614 

Lindqvist O. P159,P179,P1032,P502 

Ling J. P496 

Linklater G. P563 

List S. P804 

Littlewood C. P674,P601 

Liu J. P498 

Liu K. P1019 

Livingston G. P320 

Llewellyn H. P469,P857 

Llobera Estrany J. P407,P899 

Llorá M. P9 

Llorens S. P1078 

Llorens Torrome S. P407,P899 

Llorente J. PS24.1 

Lloyd D. P605 

Lloyd L. S. P105,FC13.5 

Lloyd L. P492 

Lloydroberts S. P883 

Lobb E. FC7.5 

Löbbe V. P786 

Lobo P. P597,P491 

Locatelli A.F. P38 

Lockett S. P136 

Loekken A. O. P353 

Lohman D. FC1.2,FC13.3,PS14.1 

Lokker M.E. P166 

Long W. S. P493 

Longo D. P892 

Long-Sutehall T. P842 

Lopes Ferreira P. PS25.2 

Lopez M. P1088,P314 

López H. P786 

López V. R. P913 

López Romboli E. P407 

Lopez Tapia F. P524 

López-Alonso R. P354,P327 

López-Muñoz M. P327 

Lopez-Robles M. C. P467 

López-Rómboli E. P899 

Lora Aprile P. P871 

Lorenzl S. P903,P1077,P849,FC2.2 

Lorenzoni G. P892 

Lores R. P106 

Love B. P348 


Low J. P857 

Low J. T. P1010,P805 

Luca D. P420 

Lucassen P. P343 

Luczak J. P918,P667,P1086 

Luengo R. P575 

Lüke U. P671 

Luna Garrido J. P324 

Lund S. P1038,P828 

Lundh Hagelin C. P652,P179,P159,P21, 

P502,P1032,FC3.5 

Lundquist G. P1032,P719,P159,P179 

Lundström S. P45,FC9.1 

Lupi S. P529,P538 

Lussier D. P1028 

Lux E.A. FC6.6 

Lyall A. PD2.3 

Lye P. A. P223 

Lynch L. FC6.6 

Lynch T. P990,P46,FC3.1,P487 

M 

Ma K. P220 

Macaulay L. P563 

MacCallion A. P897 

MacConville U. M. P897,P313,P120 

Maciel R. G. P234 

Mackay M. P338 

MacKinnon C. FC2.1 

Macková M. P822 

MacLeod R. P878 

MacPherson A. P80 

Madera R. P739 

Magee C. L. P64 

Maglakelidze M. P397 

Maglio I. P786 

Maguire R. P1 

Mahmoud F. A. P526 

Maia P. A. FC3.4 

Maier B.-O. P519 

Mainstone P. P406,P48 

Majurec M. P462,P307 

Makin M. K. P662 

Malagón Solana B. P1079 

Malia C. E. PD1.8 

Malik F. A. P802,P808,P1056 

Mallia P. P669 

Maltoni M. P1037 

Manalo M.F. C. P794 

Mañas V. P1078 

Mañas Izquierdo V. P407 

Mañas Magaña M. P841 

Manca D. P188 

Manchado Garabito R. P851 

Mancheño A. P790 

Mandelli F. P25 

Mandim M. S. P733 

Mangan M. P49 

Mannion E. P155 

Manso A. M. P263 

Månsson Brahme E. P576 

Mantilla A. P779 

Manuel I.M. P806 

Manzini J. P786 

Maraveyas A. P1026 

Marcó C. P9 

Marcoux I. FC1.4 

Mardofel A. P647 

Mariani L. P1037 

Marini M.G. P25 

Mark H. P1029 

Markowska-Gasiorowska A. P309 

Marley K. A. P468,P149,P454 

Marques L. P325 

Marques R. P381,P207,P15,P291 

Marques R. M.D. P285,P296 

Marquez García Salazar M. P594,P934 

Marshall D. P724,P8 

Marshall J. P628,P75 

Marston J. M. PS13.1 

Martelli-Reid L. P16 

Martenson B. PS11.3 

Marti C. P467,P1024 

Martí M. P786 

Martin A. P282,P553,P845 

Martin J. P598 

Martin P. P516 

Martín S. P790 

Martin de Rosales Martinez J. P524 

Martin Fuentes de la Rosa M.D.l.A. P79 

Martin Sanchez M.A. P524 

Martinez A. P314 

Martinez L. P1075 

Martínez Á. P413 

Martínez M. P511,P630 

Martínez Casares N. P534 

Martínez Cruz M.B. P152,P575,P371, 

P884,P648 

Martinez Peñalver F. P785 

Martínez-Muñoz M. P657 

Martinho C. P743 

Martini C. P739 

Martino R. P413 

Martinsson L. P45 

Mas de Xaxars A. P9 

Masel E. P846,P168 

Masfrancx D. P86,P859,P985 

Mason B. P900,P866 

Mason S. P605,P74,P111,P736 

Mason S. R. P590 

Massanet G. P9 

Masse H. P187 

Massy W. P952 

Maté-Méndez J. P899 

Materstvedt L.J. PS26.3 

Matheson C. P440 

Mathiesen H. P958 

Matis C. P560 

Matoba M. P409,P613,P943 

Matos J. A. P235 

Matos N. P432 

Matsuda Y. P410,P544,P1076 

Matsunuma R. P713 

Matsuyama K. P1089 

Matthiesen M. P136 

Mattos Pimenta C. A. P520 

Maurer M. A. P458,FC1.2 

Mausch M. P616 

Max A. FC3.4 

Mayland C. P591,P580 

Mazzocchi B. P230 

Mc Girr L. P83 

Mc Kenna E. P674 

Mc Quillan R. P83,P532,PS7.3 

McAiney C. P968 

McAnulty J. P562 

McAuley J. P315 

McCarron M. P496 

McCartney A. P910 

McCondichie M. PD2.3 

McConkey R. PS1.2 

McCrone P. P499,P279,P213,FC10.6 

McDermott C. J. P847 

McDonald K. P439 

McGettrick G. P313 

McGill I. P1028,P136 

Mcglinchey T. M. P74 

McGlinchey T. P454 

McGreevy J. P576 

McHugh G. S. P554,P3 

McIlfatrick S. PS1.2 

Mcintyre P. P695 

McKay J. P999 

Mckenna E. P580 

McKeown M. P893 

McLaughlin D. PS1.2 

McLean S. P758,P400,P208 

Mcloughlin K. FC7.6,P869 

Mcnamara-Goodger K. PS9.1 

McNaulty J. P872 

McPherson J. PS24.1 

McQuillan R. P400,P967,P120,P44,P870 

McQuillian R. P57 

McWilliams K. P593 

Meehan A. P281 

Meert A.-P. FC3.4 

Index 

Mehdi F. P891 

Mehdikhah Z. P265 

Meidell L. P194 

Meier D. P213 

Mello D. F. P108 

Meloni E. P25,P936 

Melvin J. P357 

Meñaca A. P1013,P837,P839,P708,P163, 

P712,FC14.4,FC4.4,FC4.6,FC4.3 

Menacho Perera E. P55 

Menang J. N. P416 

Mendes A. F. P755,P229 

Mendes Branquinho J. C.D.C. P961 

Mendoza T. R. P706 

Menossi M. J. P960 

Menossi M.J. P428 

Menten J. J. P1001,P392,FC6.5 

Menten J. FC13.6,PS20.5 

Mesa Virella C. P227 

Mesti T. P748 

Metsemakers J. PS1.3 

Meyer G. P671 

Meyer N. P915 

Meystre C. P820 

Miah Y. P636 

Miccinesi G. P179,P694 

Miceli R. P1037 

Michailidou A. P471,P272 

Michalsen A. FC3.4 

Middlemiss T. P. P836,P299 

Midgley C. P347 

Midgley C. J. P128 

Midson R. FC11.4 

Mienies K. A. P994,P1006,FC13.2 

Miguel S. P558 

Milani B. P239,P395,P459 

Milberg A. FC9.2 

Milicevic N. P456 

Miller B. P720 

Miller S. P584 

Millington Saunders C. P181 

Milton E. P348 

Milton L. P902 

Mindruta R. P69 

Miranda A. P786 

Miranda J. P558 

Mishriky A. M. P818 

Misko M. D. P211,P829,P287 

Missing C. P472,FC2.4 

Mitchell G. K. P439 

Mitchell H. PD1.7 

Mitrea N. P113,P741 

Moe-Nilssen R. P31 

Moens K. P28 

Mohankumar D. P998 

Moise D. P962 

Mojal S. P1064 

Moksnes K. PD1.4 

Molander U. P908,P823 

Molinaro M. P403,P1004,P349, 

P1092,P500,P1093, 

P1069,P1082 

Mollard J.-M. PS20.5 

Möller B. P274 

Molloy E. P949 

Molloy U. M. P967 

Mongeau S. P864 

Monleón M. P413 

Monroe B. P890,P5,FC12.5 

Monsell M. P61 

Montag T. P577 

Montanari M. P394 

Monteiro C. P939,P914,P612 

Montoya R. P1024,P467 

Montross L. P. P164,P114,P129 

Monul V. P69 

Moon D.H. P937 

Mooney C. FC10.5 

Moore N. P1045 

Moore S. P129,P114 

Moore S. Y. P105,FC13.5 

Morales G. P815 

Moran S. P869,P48 


Index 

Index 

Moran S. M. P103 

Morano S.G. P936 

Moreira C. P889,P325 

Morère J.F. P931 

Morgan H. P80 

Morgan M. P305,P499,FC10.2 

Morillo-Rodríguez E. P350 

Morita M. P141 

Morita T. P926 

Moroni L. P941,P193,P909,P505,P1063,P744 

Morris S. P722 

Morrison R. S. P492,P213 

Mortero A. P623 

Mortier F. P691,P249,P173,FC9.5 

Mosoiu D. P174,P145,FC14.1,PS10.2 

Mota C. P529,P538 

Moura M. P649,P370 

Mousa S. A. PS24.3 

Mousavi S. R. P265 

Mousavi S.M. P265 

Movsisyan N. P673 

Moyes R. PD2.3 

Mpanga Sebuyira L. P312 

Mporgi L. P272,P471 

Muckaden M. A. P98 

Muckaden M. PD2.7 

Mueller M. PD2.5 

Mulcahy L. P48,P869 

Müller-Busch C. P581 

Mullie A. PD1.1 

Munday D. P900,P866,P192,P132, 

P210,P635,P224,P876 

Munene G. P703 

Muñoz Carmona D. M. P518,P940,P594 

Munyoro E. C. P411 

Murakami M. P943 

Murakami S. P943 

Murchie P. P333 

Muriuri C. P678 

Murphy D. P74 

Murphy I. FC7.6 

Murphy M. P52,PD2.6 

Murphy R. FC7.6 

Murray G. P82,P586 

Murray S. A. P900,P866,P333,PL4.3 

Murray S. P493,P499,ME8,PD2.3,PS5.3 

Murtagh C. P155 

Murtagh F. FC14.4 

Musyoki D. K. P1000 

Muszbek K. P679,PS6.4 

Mwangi-Powell F.N. P312,P549,FC13.2, 

PS3.1,PS7.4 

Mwangi-Powell F. P1006,P994,P716, 

P6,P703,P1003 

Myers J. P805 

Myers L. P607 

Mystakidou K. P1057,P1087 

N 

Nabal M. P767,P769 

Nabal Vicuña M. P242,P773,P541,P785 

Nadick J. P181 

Nafici N. P480 

Nagaro T. P410 

Nagase M. P1076 

Nakashima K. P713 

Nakatani T. P945 

Nalamachu S. R. P398 

Nallar M. P481 

Namisango E. P312 

Namjesky A. P1055 

Namukwaya E. P493,P386,PD1.3 

Namukwaya E. K. P731 

Nangati Z. P675 

Nanni O. P1037 

Nanton V. P866,P900 

Nanushyan L. P1002,P650 

Naraveckis E. P700 

Narayana A. P850,P843 

Nascimento C. S.P. P447 

Nascimento I. C.L. P377 

Nascimento L. C. P108,P432 

Nash C. P49 

Nathanaelsson L. P45 

Nauck F. P930,P992,P735, 

P642,P508,PS6.3 

Naylor C. P782,P772 

Nectoux M. P12 

Needham P. R. P130,P763,P644 

Needham P. P567 

Neergård M. A. P958 

Negulescu L. P151,P116 

Nejmi M. PS3.3 

Nekolaichuk C. L. P916 

Nelesen R. A. P105,FC13.5 

Nelson A. P1009,P1012,P1046,P1040 

Nemeth C. P578 

Nespralejo A. P481 

Neto I. P1072,P280 

Neto I. G. PL2.1 

Neuenschwander H. P76 

Neumayr R. P873 

Neves E. P743 

Neves S. P184,P538,P529 

Newens P. P597 

Ngo D. P595,P57 

Ngwa E. P416 

Nica I. G. P574 

Nicholl H. P298,P1034,P799 

Nicholson C. P439 

Nightingale L. P61 

Nijs de E. P1052 

Niscola P. P936,P25 

Nishino T. P536 

Nishioka M. P399 

Noble A. P103,P693,P580 

Noble B. P196,P1035,P20 

Noble J. FC10.2 

Noble S. P1040,P883,P1026, 

P1046,P58,PD1.7 

Noguera A. P729 

Noguera-Pascual A. P350 

Nolan B. P93,P1027,FC8.5 

Nolan S. P721,ME13 

Nolte T. P382 

Nordboe A. P933 

Nordstrønen Å. P257 

Normand C. P213 

Normann A. P. P754,P255 

North C. P607 

Notter J. FC2.6 

Nozaki-Taguchi N. P536,P424 

Ntabaye M. P678 

Nugent D. P103 

Nugent S. P355 

Nunes D. P264 

Nunes I. P558 

Nunes L. P362 

Núñez Olarte J. M. P851,P470,P321, 

FC4.1,P350 

Nuñez-Portela B. P350 

Nwogu E. P386 

Nwosu A. P591 

Nyatanga B. P490 

O 

O’ Brien T. P368,P56,P887,FC7.6 

O Connor M. P580 

O’ Dowd M. P887 

O Farrell T. P60 

O’ Farrell G. FC7.6 

O’ Leary C. P887 

O’ Mahony U. P887 

O’ Neill B. P48 

Oberholzer R. P571,P404,FC14.3,FC5.6 

O’Brannagain D. P208,P758 

O’Brien M. FC1.2 

O’Brien T. P52,PD2.6 

O’Callaghan A. P901 

Ocek S. O. P762 

O’Connor B. P82 

O’Connor G. FC10.5 

O’Connor M. P329 

O’Donnell M. P313 

O’Flanagan Y. P897 

O’Gorman A. P758,P208,P400 

O’Hanlon M. P568 

Ohkuni Y. P713 

Ohno Y. P1076,P544,P410 

Oigman B. P377 

Oike M. P1089 

Oiyama E. P141 

Okada N. P523,P938 

Okamoto Y. P544,P410,P1076 

Okishiro N. P1076,P410,P544,P539 

Okuno S. P938,P523,P543 

Olafsdottir K. L. P461,P599 

Oldenmenger W. H. P391,P924 

Olgarsson H. P482 

Oliete E. P790 

Oliveira F. P711 

Oliveira J. E. P835 

Oliveira M.E. V. P235 

Oliveira R. S. P447 

Oliver D. P486,FC5.1,P910, 

P955,ME10 

Oliviere D. ME12 

Olivieri F. C.G. P531 

Olsman E. P796 

Omland G. P438 

Omlin A. FC14.3,FC5.6 

O’Neill C. L. P847 

Oneko O. P678 

Ono K. P399 

Onwuteaka-Philipsen B. P694 

Onwuteaka-Philipsen B. D. P435,P717,P10 

Onyekwuluje A. P722 

Oosterling A. P929 

Opio D. P1018 

Orecilla E. P22 

Oregas del Valle A. P481 

O’Reilly M. P418,P949,P63 

O’Reilly V. PD2.2,P448 

Oroviogoicoechea C. P22 

Orrevall Y. P576 

Ortega Galan A. P205,P91 

Ortega Morell A. P1079 

Ortega Rodriguez M. J. P934,P940 

Ortiz P. P1064 

Osborne T. P491 

O’Siorain L. P867,P568 

Oster P. PD1.5 

Ostgathe C. P13,P47,P577, 

P877,FC3.5,PS25.3 

Ostlund U. FC3.2 

Otis-Green S. P492 

O’Toole S. P178 

Ottesen S. P933 

Ottolini L. P477 

Ottonelli S. P189 

Owczuk R. FC3.4 

Owen F. P469 

Oxenham D. PD2.3 

Oyama S. P543,P938 

Ozylkan O. P397 

P 

Paceková M. P336 

Pain L. C. P444,P598 

Paiva C. P894,P127,P99,P96,P665,P627, 

P345,P640,P654,P280 

Palhus P. P896 

Palmer L. J. P401 

Palomar C. P1070 

Palomar Naval C. P541 

Palomo J. S.H. P229,P755 

Panagiotou I. P1057,P1087 

Pang D. P563 

Pannell C. P800 

Pantelidis D. P471 

Pantilat S. P492 

Papanastasiou S. P471,P272 

Papikyan A. P650,P1002 

Papillon B. FC1.4 

Paranhos G. K. P146 

Pardon K. P691 

Parker D. P704,FC11.3 

Parker G. P67 

Parkes J. FC12.3 


Parpa E. P1087,P1057 

Parr P. M. P355 

Parsons H. A. P498,P1053 

Partington L. P121 

Pascual A. P253,P238 

Pascual López A. P773 

Pasman H. R. FC14.4 

Pasman H.R. W. P435,P10 

Pastrana T. P995,P488,P47 

Patrick S. P601 

Paul K. P8 

Paul V.B. P1043 

Paula S. P367 

Paulsen Ø. PD1.4 

Paulus D. P1001 

Pautex S. P976,P560,P528 

Pawlik M. T. P915 

Pawlowski L. P658 

Payers P. P499 

Payne S. ME14,ME4,P1033,P810, 

P475,P801,P788,P496,P659, 

P854,P463,P488,P487,P825,P990, 

P1049,FC14.2,PS20.1,PS7.1 

Payot A. P187 

Pease N. P58,PD1.7 

Pecci A.P. P230 

Pedder D. P1028 

Pedersen G. P197 

Pedro Ramos Cortês A.S. P278 

Peel E. T. P847 

Peel T. P513,P1058 

Peinado Clemens R. P573,P55 

Pelipenko K. P748 

Pelttari L. P888,P578 

Pelttari-Stachl L. P977 

Pender N. J. P444 

Pereira A. P251 

Pereira C. P612 

Pereira I. P558 

Pereira J. P537,FC1.6,PS27.1 

Pereira K. P868,P377 

Pereira R. O. P234 

Pereira S. M. P251,P258,P564 

Pereira Guimaraes A.L. P235 

Perera Menacho E. P573 

Pereyra J. P1065 

Perez R. S. P559,P14,P175,P688,P705 

Perez R.S.G.M. P533 

Pérez C. P1075 

Pérez M. P1065,P138 

Pérez - Manrique T. P94 

Pérez Aznar C. P851,P321,FC4.1 

Perez Cayuela P. P152 

Perez Espina R. P91,P205,P666 

Perez-Manrique T. P1084 

Perkins E. P1031 

Perkins P. P521 

Perpiñá A. P1075 

Perpiñá Fortea C. P1079 

Perry F. P202 

Persson C. I. P143 

Pesenti C. P76 

Petera J. P232,P248 

Peters L. P329 

Petkova H. P441 

Petrognani A. P12 

Pettenati F. FC14.4 

Pettersson K. P576 

Pettifer A. P661,P210,P224,P635 

Petursdottir A. B. P599 

Petursdottir E. P830 

Pfaff H. P13 

Pfisterer M. P976,PD1.5 

Pfleger M. P865,FC2.1 

Phan A. P852 

Piano V. P380 

Picaza J.M. P769,P767 

Piccone S. P481 

Pichler P. P873 

Piers R. P976,P437,P292,FC3.4 

Pieters K. PD1.1 

Pigni A. P85,FC6.1 

Pimenta P. P1082,P1092 

Pimentel F. P1074 

Pingarilho M. J. P654,P640,P627,P345, 

P665,P96,P127,P99 

Pinheiro P.A. R. P530 

Pinho M. J. P1017 

Pinto A. P558 

Pinto A.C. P558 

Pinto C. S. P246,P772,P782,P245 

Piovesan C. P505,P909,P1063, 

P941,P193,P744 

Pir Muhammad K. P891 

Pires A.R. P833 

Pires C. P889,P649,P370 

Pirozzo H. P770 

Piso P. P915 

Pissarek A. P977 

Pissarek A. H. P888 

Piva L. P176 

Planas J. P1064 

Planas Domingo J. P773,P242 

Plassais L. P264,P261 

Plaza M.N. P332 

Pleschberger S. P697,FC7.1,PS4.3 

Ploeg J. P724,P8 

Plog A. P581 

Plummer J. P1029,FC6.2 

Pockley A.G. P87 

Pogonet V. P69 

Pointon B. PS11.3 

Pond G. P16 

Pons D. P9 

Pons O. P790 

Pool R. P708,P163,P712,P837,P839, 

P1013,FC4.4,FC4.6,FC4.3 

Pooley P. P997 

Poolman M. P662 

Popa C. P23,P954 

Popa Velea O. P502,FC3.5,P701 

Poppito S. R. P158,FC10.1 

Porchet F. P147,P632,P863 

Porta J. P1078 

Porta-Sales J. P242,P773,P899,P407 

Portela M.A. P1070,P511 

Portela Tejedor M.A. P630 

Portenoy R. K. P492 

Posselt J. P642 

Potter J. P776 

Poulain P. P931 

Poulose J.V. P766 

Pousset G. PD2.1 

Powazki R. P811 

Powell F.M. ME3 

Powell P. P674 

Powell R.A. P312,PS25.2 

Powles L. P598 

Poyato E. P1088,P314 

Pozarowska E. P309 

Prendergast S. P532 

Prentice W. FC10.2 

Preston N. J. P1028,FC8.2 

Price J. P1034,FC12.3 

Price M. P607 

Priester P. P248,P232 

Prifti F. FC5.5 

Prifti M. P911 

Prino A. P892 

Prins J. P465 

Prinz-Rogosch U. P1016,P881 

Prior L. FC12.3 

Probst L. P863 

Prokop A. PD2.8 

Proot I. PS1.3 

Puerta M.D. P200 

Puigbó D. P216 

Purcell V. P49 

Putignani F. L. P941 

Pype P. F. P608 

Pyszora A. PD2.8 

Q 

Qidwai W. P891 

Quaglia E. P768 

Querido A. P207,P15,P381,P291,P296 

Index 

R 

Rabadán A. P786 

Radbruch L. P781,P487,P990,P457, 

P930,P47,P671,P571, 

ME5,PS20.1,PS8.2 

Radcliffe C. P50,P460 

Radunovic M. P1005,P1005 

Raijmakers N. P306,P502,FC3.5 

Raijmakers N. J. P302 

Raijmakers N. J.H. P689,P719 

Rajer M. P748 

Rama R. P911,FC5.5 

Ramirez D. P29 

Ramos A. P238,P253,P604 

Ramos S. B. P803 

Ramos Jiménez M.A. P795 

Ramsenthaler C. P169 

Rao N. P30 

Rasmussen B. H. P194,P159,P179,P1032 

Rasmussen B. P614,P290 

Rathbone K. P674 

Rauck R. L. P398 

Raus K. P173, 

Ravnik M. P748 

Rayment C. S. P548,P923 

Rea C. P887 

Reale C. FC6.6 

Reale L. P25 

Rechenberg-Winter P. FC12.6 

Recio Gállego M. P851,FC4.1 

Redondo Molano M.J. PD2.4 

Redondo Moralo M.J. P573,P55,P37, 

P260,P150,P898 

Reed S. D. P997 

Regan J. P584 

Rei M. P1072 

Reigada C. PS10.3 

Reimer K. P384 

Reiner F. P589 

Reinhardt D. FC11.5 

Reis A. X. P234 

Reis T. C. P782,P772 

Reisberg A.-C. P139 

Reitinger E. P445,P446,P981 

Reitsma N. FC7.2 

Remi J. P1077 

Renard M. P952,PD2.1 

Renshaw J. P355,P580 

Renton L. P722 

Renz M. FC10.3 

Renzenbrink I. PS6.2 

Requena A. P767,P769 

Requena M. L. P700 

Revnic J. FC6.6 

Rexach L. P976,P332 

Reymond E. FC11.3 

Reyners A. FC3.4 

Rhatigan J. P48,FC7.6 

Rhebergen A. P374 

Rhee J. P686 

Ribbe M. P976,P438,P559,P14 

Ribbe M. W. P175,P10,P435 

Ribeiro A. S. P1017,P733 

Ribeiro A.S. C.D. P36 

Ribeiro E. PS10.3 

Ribeiro Pereira E. M. P835 

Richardson M. P48,FC7.6 

Ricou B. FC3.4 

Riera M. P1064 

Rietjens J. P559,P308, 

Rietjens J. A. P160,P302,P175, 

P688,P705,P173 

Rietjens J. A.C. P819,P689 

Rigge D. P611 

Rijswijk E. V. FC7.2 

Riley J. P59,P596,P181,P1068,P316 

Rimac M. P462,P307 

Rimmer D. P631 

Rincón C. P413 

Risggits A. P471,P272 

Rita H. P1028 

Ritchie C. P492 

Rithara S. M. P104 


Index 

Index 

Rivas Mateo M. P260 

Rivas Mateos M. P262,PD2.4 

Rivero G. PS24.1 

Roberts S. P600 

Roberts V. P1026 

Robertson M. P50 

Robinson C.A. P783 

Robinson J. P901,P1028,P136,P825 

Robinson V. P800 

Roca R. P9 

Rocafort Gil J. PS16.1 

Rocha C. P184 

Rocha I. P377 

Rocha M.C. P. P287 

Rocha S. P106,P959 

Rochedreux A. FC1.4 

Rocker G. P492 

Rodio G. F. P481 

Rodrigues C. P325,P325 

Rodrigues L. F. PS16.3 

Rodrigues N. P38,P566 

Rodriguez A. P356 

Rodriguez D. P773 

Rodriguez E. P9 

Rodríguez Á. P244,P777,P247 

Rodríguez D. M. P913 

Rodríguez Morera A. P478 

Rodriguez Pascual N. P294 

Rodriguez Rodriguez Á. P241,P240, 

P774,P243 

Rodríguez Rodríguez J.N. P1059 

Roh S.Y. P922 

Rolls E. FC11.1 

Rolski W. P932 

Roman M. P449 

Romaní-Costa V. P841 

Romer G. P274 

Romero F. P363 

Romero Cotelo J. P524 

Romero Rodriguez Y. P524 

Romero Sánchez E. P1079 

Romotzky V. P701,FC3.5 

Roque E. P640,P654,P345,P127, 

P99,P96,P665,P627 

Rosa B. P558 

Rosanna H. P5 

Rosen J. P389 

Rosengren E. P482 

Roser T. D. P950,FC2.1 

Roser T. ME13 

Rosethorne E. M. PS24.1 

Rosland J. H. PD1.4 

Rosland J.H. P692,P257,P256 

Ross C. P593 

Ross J. R. P59,P316 

Rossato L. M. P287 

Ross-Mills J. P136 

Roumeliotou A. P1087 

Round J. P1041 

Rovira G. O. P913 

Rowett D. P1029,FC6.2 

Rowlands J. PD1.7 

Rowley D. P400 

Roxberg Å. P692 

Roy-Gagnon M.-H. P187 

Royo Aguado J.L. P785 

Roza B. P650 

Ruberg K. P507 

Rubulotta F. FC3.4 

Ruijs C. D. P717 

Ruiz A.I. P1064 

Ruiz P. P790 

Ruiz Castellano Y. P898,P573,P55 

Ruiz Castellanos Y. P37 

Ruiz Diaz M. P884 

Ruiz López D. P884,P371,P575,P648 

Ruiz Ortiz S. P524 

Ruiz-Acosta A. P354 

Ruiz-López D. P350,P761 

Rukhadze M. P397 

Rukhadze T. P397,P643,P364, 

P972,P927 

Rumble C. FC10.2 

Ruppert D. B. P191 

Rus M. P413 

Rush R. P89 

Ruske J. P925 

Russel M. P633 

Russell S. J. P668 

Russo L. P38 

Ruysseveldt I. P289,P952,PD2.1 

Ryabova L. M. P455 

Ryan K. P897,P400 

Ryan K. M. P458,FC1.2 

Ryan R. P1019 

Ryan T. P844,P328,P222 

Rybicki L. P1066,P506,P512 

Rydell-Karlsson M. P652 

Rys S. P249 

S 

Sá A. B. P835 

Sabatowski R. P925 

Sacerdote P. PS24.2 

Saeed A. B. P818 

Saeki T. P943 

Saetre L. F. P754 

Saez Lopez S. P534 

Sahlberg-Blom E. P979 

Saito Y. P945 

Saiz Cáceres F. P262,P260,PD2.4 

Sala G. P739 

Sala Corominas R. P407 

Salas T. P152 

Saleem T. Z. P845,P553,P282 

Sales E. P12 

Sales P. P314,P1088,P29,P824 

Salgueiro S. P786 

Sampaio F. P251 

Sampson E. P320,P434 

Sampson E. L. FC3.6 

Sánchez F. P777,P247,P244 

Sánchez M.I. P815 

Sánchez M.P. P777,P247,P244 

Sánchez N. P244,P247,P777 

Sánchez Chaves M.P. P243,P241,P774,P240 

Sanchez Correa M.A. P573 

Sánchez Correas M.A. P55 

Sánchez Dominguez F. P774,P240, 

P241,P243 

Sánchez Isac M. P851,P321,FC4.1 

Sanchez Murguiondo M. P449 

Sánchez Sánchez N. P243,P241,P240,P774 

Sancho Zamora M.A. P332 

Sand L. P100 

Sanderson C. P1029 

Sandvik R. P40,P438,P390 

Sanger G. J. PS22.2 

Sanna P. P76 

Santana C. P73 

Santos C. P984,P966,P1072 

Santos J. P520 

Santos M. R. P287 

Santos M.J. P961 

Santos-Morano J. P327 

Sanz L. B. P97 

Sanz Llorente B. P470 

Sardo V. P744,P941,P193, 

P909,P505,P1063 

Sarsanedas E. P1064 

Sassi Presti M. S. P414,P422 

Sastre P. P779 

Satomi E. P1089 

Saunders Y. P776,FC11.6 

Sauter S. P159,P179,P1032 

Saviñón B. P9 

Sayers M. P825 

Scaccabarozzi G. P871 

Scarpi E. P1037 

Schaefer M. PS24.3 

Schaffer J. P749 

Schalkwijk A. P929,P380 

Schampi E. P290 

Schantz-Laursen B. P814 

Schell M. PS13.3 

Schermer M. FC9.4 

Scheve C. P169 

Schildmann E. K. P1060,P821 

Schildmann J. P645 

Schleckman E. P18,P506,P1066,P535, 

P526,P633,P811,P512 

Schlemmer M. P903 

Schlesiger G. P507 

Schmidt A. P950 

Schmidt-Rio J. P1024,P467 

Schmitz N. FC14.3 

Schneid H. P494 

Schneider G. P581 

Schneider N. P457,PD1.5,PS5.2 

Schneider S. P195 

Schofield Z. FC10.4 

Schollaert G. P859,P985 

Scholten W. K. P459,P395,P239 

Scholten W. P990,P487,ME4, 

PS20.1,PS8.1 

Schrauwen W. FC3.4 

Schubert B. P925 

Schuett M. FC10.3 

Schuler U. S. P925 

Schüler S. P502 

Schulz C. P118 

Schulze A. FC12.4 

Schumacher K. FC11.4 

Schwarz E. R. P852 

Schweitzer B. P. P110 

Scott I. P825 

Scotté F. P931 

Seale C. P160 

Seamark D. P854 

Seeley S. K. P192,P635 

Seeley S. P661,P224 

Selim M. E. P818 

Selman L. P7,FC1.1 

Selvarajah D. FC6.3 

Sen M. P636 

Seow H. P16 

Sephton J. P874,P273 

Serra i Vila M. P227 

Serrano G. P1078 

Serrano S. L. P875,P363 

Serrano Bermúdez G. P407 

Serrao D. P264 

Serrie A. P931 

Servente V. P1014 

Sesiashvili E. P364 

Seven P. P968 

Sevilla M. P367 

Seyidova-Khoshknabi D. P2,P503, 

P1050,FC8.3 

Seymour J. P702,P463,P160,P1033, 

FC13.4,FC14.2 

Seymour J. E. P268 

Shaikh A. K. P112 

Shakenova A. P993 

Shapoval K. P372,FC13.3 

Shard A. P331 

Shaw P. J. P847 

Shaw R. PS2.1 

Sheehy-Skeffington B. P758,P208 

Shelby-James T. M. P1029,P485,FC5.4 

Shelby-James T. P516,FC5.2,FC6.2 

Sheridan J. P48,FC7.6 

Sherry K. P385,P408 

Shin S.W. P922 

Shinde A. P852 

Shipman C. P900,P866,FC10.2 

Shlomo N. P1036 

Shoemaker L. K. P633 

Shulla M. FC5.5 

Sibley A. P810 

Siden H. FC12.2 

Siegert R. FC1.1 

Sigurbjörnsson E. P19 

Sigurdardottir K. P257 

Sigurdardottir V. P599,P461,P830, 

P19,P556 

Sillevis Smitt P. A. P924 

Silva C. C.B. P229 

Silva C. C. P729 


Silva J. A. P984 

Silva L. P287 

Silva M. P743,P733 

Silva M. I. P1017 

Silva P. P743,P184,P1092,P1082 

Silva R. P. P860 

Simader R. ME9,PS17.3 

Simanek R. P1091,P589 

Simms V. P312 

Simoens S. P1001 

Simões A. P280 

Simões Â. S. P756,P263 

Simon S. T. P551,P557,PS8.3 

Simon S. P6,P169,FC14.4 

Simpronio J. FC12.1 

Sims Gould J. P872 

Singer S. P556 

Sisoix C. P579 

Sithole Z. M. PD2.9 

Sitte T. FC6.4 

Sittl R. P877 

Skale B. P352 

Skorpen F. P85 

Skulason B. P461 

Slama O. P185,P366,P396 

Slamova R. P185 

Slánská I. P248,P232 

Slevin K. A. P850,P843 

Sloan L. P315 

Slocum-Gori S. FC7.4 

Slort W. P110 

Slováńek L. P248 

Slováńková B. P248 

Slovacek L. P232 

Sluzky L. P786 

Small N. P854 

Smeding R. E.W. P750 

Smith A. P389 

Smith B. P631 

Smith C. F. P596 

Smith C. P181 

Smith G. P857,P805 

Smith J. P454,FC8.1 

Smith L. N. P3,P554 

Smith S. P196 

Smits D. P28 

Smorenburg C. H. FC3.3 

Snow B. P901 

Snowden J. FC6.3 

Soares C. S. P912,P228 

Sobonya N. P615 

Söderberg A. P848 

Sohn C.H. P922 

Sokolova E. P427 

Solano Garzón M. P321,P851,FC4.1 

Soler Labajos E. P275 

Solvåg K. P257 

Song H.S. P922 

Song J. P735 

Sopata M. P918,P667,P1086 

Soriano D. P275 

Soriano M. A. P633 

Soriano V. P790 

Soteras M. P22 

Sousa D. P856,P326 

Sousa Resende T. P325 

Souza J. C.D.S. P367 

Souza L. F. P211 

Sparr S. PS11.3 

Speck P. P7,P1018,P305,FC1.1 

Speyer F. P662 

Spigset O. PD1.4 

Sporis M. P23,P954 

Spoto A. P236 

Spruyt O. FC6.2 

St George M. FC11.6 

Stabel C. P1055 

Stachowiak A. P494 

Stam E. P14,P559 

Stanciulescu L. P145 

Starnes G. P607 

Steed S. P481 

Steele R. FC12.2 

Steenbakkers K. P343 

Stelcer B. P570 

Stengel K. FC3.1 

Sterckx S. P173,FC4.2 

Stevens R. J. P1047,P489 

Stevenson B. PD2.3 

Stickland A. E. P664,P725,P603 

Stiehl T. P950 

Stiel S. P781,P47,P930 

Stirling I. P408,P385 

Stirling L.C. P628,P722,P444 

Stobbart-Rowlands M. P588,P970 

Stojanovic S. P187 

Stone C. A. P92,P1027,P93,FC8.5 

Stone P. P571,PS15.2,PS18.2 

Straatman L. FC12.2 

Strancar K. P831 

Strand L. I. P31 

Strang P. FC9.2 

Strasser F. ME11,P571,P404,P1042, 

FC10.3,FC14.3,FC5.6,PS25.1 

Streffer M.-L. P288,P214 

Strupp J. P13 

Stuart P. P224,P635 

Subramaniam S. P67,P583 

Suda M. P523,P938 

Sui J. P51 

Suija K. P886,P886 

Sulaivany E. P454 

Sullivan P. P617 

Sumner K. P631 

Sundberg M. E. P848 

Surkyn J. P690 

Sussman J. P16 

Sutherland J. P347,P203 

Sutton S. P591 

Suzuki H. P141 

Svetlak M. P185 

Svetlakova L. P185 

Svyatova S. V. P455 

Swann D. P181 

Swarbrick P. M. P788 

Swart S. P701,P559,P14 

Swart S. J. P688,P175,P705 

Sweeney B. P897 

Swetenham K. PS2.1 

Sykes N. P. P5 

T 

Taboga C. P183 

Tadevosyan A. P142 

Tagarro I. P402 

Tahmasebi M. P569 

Takada T. P926 

Takagi T. P1076 

Takigawa C. P527,P409 

Tamai Y. P938,P523 

Tamaki T. P943 

Taminiau-Bloem E. P195 

Tan A. P188 

Tanghe S. P339 

Taniguchi A. P724,P8 

Tanimukai H. P544,P410,P1076 

Tarrago E. P253 

Tattersall M. P516 

Taubert M. P118,P1009 

Tavares F. A. P604,P26,FC1.5 

Tavares J. M. P889 

Taylor A. P1 

Taylor D. P997 

Taylor J. P335,PS17.3 

Taylor J. M. ME9 

Taylor R. P720 

Teike Lüthi F. P147 

Teixeira C. M. P258 

Tejedo M.J. P1075 

Tell R. B. P913 

Tendas A. P25,P936 

Terenteeva E. P892 

Ternestedt B.-M. P269 

Teunissen S. C.C.M. P102,P1051 

Teunissen S. P1052 

Thirukkumaran T. P219 

Index 

Thomas C. P488,P475 

Thomas C. J. P64 

Thomas K. P588,P970 

Thomas L. FC1.2 

Thompson A. P674 

Thoonsen B. P341,FC7.2,PS5.1 

Thorney S. P1053 

Thorns A. P491,P1030,P597,P219 

Thurston A. P878 

Tiernan E. P317,P319,P595 

Tietze A.-L. PS9.2 

Tinant E. P786 

Tishelman C. P576,P1032,P701, 

P179,P159 

Todadze E. P364 

Todd A. M. P554,P3 

Todd C. P801,P499 

Toland L. P636 

Toma S. P1021 

Tomasek J. P873 

Tomé M. M. P538,P529 

Tomiyasu S. P943 

Tonkli A. P748 

Tookman A. P469,P1010,P267 

Torlinski L. P442 

Torres E. P200 

Torres L. FC6.6 

Torres M. L. P733,P1017 

Torres-Vigil I. P706,FC9.3 

Torres-Yaghi Y. FC9.3 

Torrubia P. P769,P767 

Toscani F. P10,P163,P712,FC14.4, 

FC4.3,PS25.2 

Townshend B. P276 

Tracey G. P49,P60,P448 

Trajkovic- Vidakovic M. P1051,P1052 

Tranter B. PD1.7 

Trauer T. FC7.5 

Travado L. ME14,PS23.1 

Tredgett K. P585 

Tredinnick N. P800 

Trindade N. P564 

Tripodoro V. A. P759 

Tripodoro V. P786 

Trontelj M. P831 

Trotman I. P582,P517,P360 

Trujillano J.J. P769,P767 

Tryphonos A. S. P826 

Trzaska D. K. PS12.4 

Tseung H. P674 

Tshuma B. P727 

Tsilika E. P1057,P1087 

Tsimafeyeu I. P1062 

Tsouros A. D. P441 

Tsugane M. P1076 

Tsujinaka T. P1089 

Tsuneto S. P1076,P410,P544,P539 

Tuca Rodríguez A. P407,P899 

Tuckett A. FC11.3 

Tudor M. I. P1021 

Tudose C. PS11.3 

Tuffrey-Wijne I. PS1.1,PS1.3 

Tunedal U. P652 

Turitz S. FC14.1 

Turkadze M. P364 

Turner K. P1010 

Turner M. P1028,P1049,FC3.1,PS7.1 

Twomey F. P63,P80 

Twomey M. P949,P418 

Tyler A. J. P662 

Tymoshevska V. P372,FC13.3 

Tymoshevska V. B. P660 

U 

Ubogagu E. A. P68 

Uceda Torres M.E. P1059 

Uddin K. P67 

Ueda J. P1089 

Uejima E. P1076 

Uez F. P477 

Ungermann G. P508 

Unió I. P1075 

Unk M. P748 


Index 

Index 

Urdiroz J. P511,P630,P1070 

Urquhardt R. P198 

Usenko O. I. P455 

V 

Valentín Tovar R. P260,P262,PD2.4 

Vales L. P856 

Vallano Ferraz A. P242,P773 

Valle C. P1072 

Valls A. P1075 

Valls J. P815 

Valls I Ballespi J. P982,P225,P227 

Vals y Vallespi J. P324 

Van Aarsen K. P695 

Van Beek K. P334 

Van Bommel M. J. P115 

Van Camp S. P292,P437 

Van de Vathorst S. FC9.4 

Van de Velde F. P17 

Van de Wiel H. FC2.6 

Van Delden J. J. P302,P688,P705 

Van Delden J. J.M. P689 

Van den Block L. P167,P771,P694, 

P587,P170,PS20.6 

Van den Broek J. P533 

Van den Dungen I. P504 

Van den Eynden B. P288,P214,P853, 

P337,P715 

Van den Muijsenbergh M. E. P684 

Van Den Noortgate N. P437,P976, 

P292,FC3.4 

Van der Boog T. H.M. P391 

Van der Drift M. P929 

Van der Geest S. P684 

Van der Heide A. P166,FC3.3,P160,P175, 

P719,P688,P302,P819, 

P705,P689,P182 

Van der Horst H. P110 

Van der Maas P. J. P688,P705 

Van der Rijt C.C.D. P515,P391,P924,P166 

Van der Rijt C. P182 

Van der Steen J.T. P167 

Van der Steen J. T. P969,PS4.2 

Van der Stichele R. P167 

Van der Vegt B. J. FC4.5 

Van der Vegt B. P306 

Van der Wal G. P717 

Van Dijk M.J. P339 

Van Eechoud I. P437 

Van Eechoud I.J. P292 

Van Geet C. PD2.1 

Van Gurp J. L.P. P1022 

Van Ham M. P929 

Van Hoogstraten E. P465 

Van Immerseel A. P853 

Van Landeghem P. FC9.6 

Van Lander V.L. A. P483 

Van Leeuwen E. P1022 

Van Montfort C. A. P924 

Van Nes M.-C. P976 

Van Rijswijk E. P465,P341,P343,PS5.1 

Van Schrojenstein PS1.3 

Lantman-de Valk H. 

Van Selm M. P1022 

Van Thiel G. J. P302 

Van Thiel G. J.M.W. P689 

Van Tol C. P374,P533 

Van Tol D. G. P306,FC4.5 

Van Weel C. P341,P465,PS5.1 

Van Zuylen L. P166,FC3.3,P159,P175, 

P719,P688,P182,P705 

Vanden Berghe P. P289,P1001,PD1.1,PS25.2 

Vander Stichele R. P691,P587 

Vandervoort A. P167 

Vandewalle H. P337 

Vannuffelen R. P392 

Vaquero J. P899 

Varga A. V. P574 

Varrassi G. P850,P843 

Vasconcelos C. D.S. P447,P861,P980 

Vassiliou I. P1057 

Veerbeek L. P166 

Vega-Sánchez J. P354 

Velijanashvili M. P643,P972 

Verbeke N. P437,P292 

Vergara-López S. P327 

Verger Fransoy E. P242,P773 

Verhagen C. P929,P380 

Verhagen C.A.H.V.M. P504 

Verhagen S. FC7.2 

Verissimo S.M. L. P295 

Veronese S. P486,FC5.1 

Verreault R. P388 

Veselska M. P336,P365 

Veterovska Miljkovik L. P233 

Vezzoni C. P302,P306,FC4.5 

Viallard M.-L. PS2.2 

Vianello C. P183 

Vicario F. P892 

Vicky S. P591 

Vidaurreta R. P152 

Vidaurreta Bernardino R. P324 

Vidaurreta-Bernardino R. L. P761 

Vieira E. G. P358 

Viel S. P275 

Vignali S. P1014 

Vilavicencio Chávez C. P407 

Vilches A. Y. P97,P94 

Vilches Y. Y. P42 

Vilches Y. P1084 

Vilela I. P612 

Villa B. P680,P623 

Villani W. P394 

Villavicencio-Chaves C. P899 

Villen M. P524 

Vincent E. P751,P579 

Vinhas F. R. P245 

Virgili A. P9 

Vissers K. C.P. P504 

Vissers K. P465,P334,P341,P1022,P380, 

P929,FC13.6,FC7.2,PS5.1 

Vissers K. C. PS20.5 

Vivat B. P19,P556,FC1.3 

Voest E.E. P1051 

Volicer L. PS11.1 

Völkel M. P670 

Voltz R. P13,P577,P701,P507, 

PS8.4,ME10 

Von Petery G. P759 

Vora V. P525 

Vosit-Steller J. P741 

Vrehen H. P1052 

Vulperhorst J. J.M. P102 

Vvedenskaya E. ME5,P427 

Vyhnalek B. P903 

Vyzula R. P185 

W 

Waerenburgh C. P288,P214 

Wagemans A. PS1.3 

Wagner A. P361 

Wahnschaffe K. P457 

Wainer R. P481 

Waldron D. P155 

Walisko-Waniek J. P13 

Walker H. P674,FC11.3 

Walker S. P725,P603,P880,P641,P340 

Wallace E. M. P418,P317,P319 

Wallace E. P63,FC7.6 

Wallace M. S. P398 

Wallerstedt B. P979 

Walls E. P82 

Walsh D. P18,P633,P1066,P526,P506, 

P535,P2,P811,P512,P550, 

P1050,P1071,P503,FC8.3 

Walsh J.B. P92 

Walsh J. P406 

Walther-Veri S. P76 

Wang X. FC3.1 

Ward S. A. P651 

Warmenhoven F. P465 

Wasner M. P865,FC2.1 

Waterman D. P80 

Watt C. P602 

Watzke H. P1091,P1055,P168,P873,P846 

Webb D. P132 

Webb P. A. P131 

Weber M. P1061,P645 

Webster C. P600 

Wedding U. P642 

Wedenby C. V. P479 

Weel C. V. FC7.2 

Wegleitner K. P259,P670 

Weir P. P611 

Wells A. U. P316 

Welponer H. P849 

Wenchel H.M. P577 

Wendt A. P1069 

Wenk R. P995 

Wenzel C. P286,P697,FC7.1 

Wermuth I. FC12.4 

Werner P. P969 

Werni M. FC14.6 

Westerhuis W. P731 

Westers P. P1051 

Westman A.-M. P479 

Weststrate J. C. P374 

Weyers H. P306,FC4.5 

Wheatland G. P582 

Wheeler J. L. P492 

Whelan A. P874,P273 

Whiriskey C. P869,P63 

White P. T. PS17.2 

White S. P313 

Whitmore D. P596 

Whitmore S. M. P105,FC13.5 

Whittaker T. P674 

Whomersley S.-J. P273,P874 

Whyte B. P595 

Whyte D.G. P355 

Wickson-Griffiths A. P872 

Widmer C. FC14.3 

Wiedemann G. PD2.5 

Wiese C. H.R. P191,P915 

Wiesmayr M. P168 

Wijk H. P823 

Wild M. P670 

Wilde D. P357 

Wilkinson I. D. FC6.3 

Wilkinson R. P568 

Willemen F. P715 

Willems D. P796 

Williams A. FC7.5 

Williams E.M.I. P209 

Williams H. P681 

Williams L. P747 

Williams M. P1012 

Williams T. L. P847 

Willis A. PD2.3 

Wilson C. P180 

Wilson D. P878,P453 

Wilson D. M. P998 

Wilson E. P702 

Wilson J. P440 

Wilson K. FC12.2 

Wilson L. P999 

Windus M.-J. P482 

Winsborrow S. P103 

Winslow M. P383,P1035,P196 

Winters K. P164 

Wiseman T. P212 

Witkamp E. P182,P391 

Wodarg W. PS21.1 

Woitha K. P334 

Wojak K.P. P508 

Wood C. PS13.3 

Wood D. P628 

Wood H. P1058,P513 

Wood J. P1068 

Woodwark C. P720 

Wright B. P154,P303 

Wright C. P517 

Wright M. B. P869 

Wysocka E. P858,P442 

X 

Xavier P. P1069 

Xie F. P850,P843 

Y 


Yamaguchi Kurashima A. P33 

Yamasaki K. P938,P523 

Yang G. M. P1090 

Yang H. P129,P114 

Yang H. B. P105,FC13.5 

Yashiro E. P536 

Ybarra C. P1084 

Yim C.Y. P922 

Yo T. P926 

Yomiya K. P409 

Yong W.C. P1015 

Yordanov N. P832 

Yorimori A. P141 

Yoshida M. P141 

Yoshida T. P1089 

Yoshimoto T. P409,P613,P943 

Young T. E. P556 

Young T. P19 

Yue G. P503,FC8.3 

Z 

Zabala C. P106 

Zafar S. Y. P492 

Zafar Y. P997 

Zagar T. P831 

Zahirodin A. P480 

Zaider T. I. FC12.1 

Zakotnik B. P748 

Zamora J. P332 

Zamponi L. P892 

Zana A. FC2.3 

Zana Á. P117 

Zana K. FC2.3 

Zanoni M. P892 

Zavratnik B. P831,P748 

Zdrahal F. FC14.6 

Zepf K.I. P1061 

Zernikow B. PS9.2 

Zertuche T. P238 

Zisberg A. P969 

Zonato S. P176 

Zorzo J. C.D.C. P428 

Zorzo J. C. P960 

Zottele P. P888 

Zucco F. M. P744,P505,P909, 

P1063,P941,P193 

Zúmel L. P770 

Zuriarrain Y. P1070 

Zuurmond W. W. P688,P175, 

P705,P559,P14 

Zuurmond W.W.A. P533 

Zuylen van L. P195 

Zwaagstra A. P172 

Zwakhalen S. P388,P920 

Zwar N. P686 

Index 


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