Poster abstracts CONNECTING DIVERSITY

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Poster abstracts Poster abstracts 329. Adapting the Liverpool Care of the Dying Pathway for patients dying of End Stage Renal Disease: A National Pilot Claire Douglas 1 , John Ellershaw 1 , Fliss Murtagh 1, 2 , Joanna Chambers 1 , Martine Meyer 1 , Matthew Howse 1 , Alistair Chesser 1 , STEPHANIE GOMM 1 , Polly Edmonds 1 , Deborah Murphy 1 1 Marie Curie Palliative Care Insitute Liverpool, PALLIATIVE CARE SERVICES, Liverpool, United Kingdom 2 King’s College London, PALLIATIVE CARE SERVICES, London, United Kingdom Introduction In February 2005 the UK National Service Framework for Renal Services (Part 2) was produced. A significant proportion was dedicated to End of Life Care and recommendations were made that tools such as the Liverpool Care of the Dying Pathway (LCP) should be used to enhance care for the patient dying with End Stage Renal Disease (ESRD). Thus a National Steering Group was established, consisting of health professionals from Renal and Palliative Medicine. The aim was to adapt the generic LCP to accomodate patients dying of ESRD. Methods Nine pilot sites within England were nominated and a retrospective case-note audit on 20 patients who had died in each renal unit was performed. This looked at documentation of care around death. As patients with renal failure are susceptible to drug toxicity, a subgroup was formed to propose new LCP symptom control prescribing guidelines, according to current evidence and best practice. Results The goals of the generic LCP were found to be transferable for patients dying with ESRD. The most challenging area was producing safe and practical guidelines for the management of pain, as the evidence for the use of opioids in renal failure is poor. However, a consensus was reached and symptom control prescribing guidleines for the patient dying with ESRD have been produced and piloted. These guidelines will be discussed. 330. An audit of referral practice of patients with end stage renal disease to the Royal Liverpool University Hospital Palliative Care Team Alistair McKeown, Ruth Agar, Heino Hugel, John Ellershaw PMarie Curie Palliative Care Institute, Liverpool, Palliative Care, Liverpool, United Kingdom Aims This retrospective survey assessed the referral practice for patients with end stage renal failure (ESRF) from the nephrology wards to the palliative care team in a large teaching hospital in the North-West of England. In addition symptoms in this group were assessed. Methods 49 referrals with “renal” as a primary diagnosis over a two-year retrospective period were identified from computerised referral data. General and palliative care notes were reviewed by the researchers and a data collection tool designed and completed. Data was analysed with SPSS. Results Most common reasons for referral were for “placement” (38.6%) and “dying/distressed” patients (22.7%), although psychological support was also prevalent (15.9%). Renal teams discussed stopping dialysis in the majority of cases (89%), but documented preferred place of care less frequently (48.3%) and rarely achieved discharge to these locations (21.4%). There was a broad symptom complex, with fatigue and anorexia the most frequent dominating problems. Conclusion While renal teams are thorough when discussing dialysis and prognosis, there seem to be issues regarding discharge to preferred place of care. Increased usage of the LCP and regular usage of the place of care documentation from the end of life initiative may improve this situation. 331. Interface of Palliative Care and Renal Services : Impact of an Action Learning Set? Stephanie Gomm 1 , Hilary Robinson 2 , Catherine Byrne 3 , David New 4 , Susan Heatley 5 , Gill Hurst 6 1 hope hospital, Palliative Care Team, salford, United Kingdom 2 hope hospital, renal medicine, salford, United Kingdom 3 hope hospital, Palliative Care Team, salford, United Kingdom 4 hope hospital, renal medicine, salford, United Kingdom 5 central manchester and childrens teaching hospital, renal medicine, Manchester, United Kingdom 6 central manchester and childrens teaching hospital, renal medicine, Manchester, United Kingdom Aim: To assess the effect of a multi-professional action learning set on access to palliative care for renal patients/carers across Gr Manchester,UK. Method: 9 renal and palliative care practitioners and a carer met monthly using action learning to share experiences,took action and learnt from that action to meet the following objectives:?Enable renal and palliative care teams to work together to influence access to palliative care;?Enhance care for patients managed conservatively or withdrawing from dialysis;?Extend use end-of-life care tools. Results: Sharing of information:- documentation of multi-disciplinary team decisions in a supportive care register/database; use of out-of-hours hand-over forms;community patient- held records and supportive care directories.Increase profile of conservative management via local kidney patient associations. Identifying gaps in care:- use of Care of Dying Pathway in all care settings; improve communication between services by the Gold Standards Framework, and access to palliative care services. Education:- communication skills training for renal teams and renal failure management for palliative care teams. Service development:- renal conservative management clinics. Conclusion: Action learning has initiated new and enhanced existing resources for patients/carers by improving skills across the interface of renal and palliative care services. 332. Delivering effective end-of-life care for people with advanced heart failure Kirsty Boyd 1 , Allison Worth 1 , Scott Murray 1 , Marilyn Kendall 1 , Rebekah Pratt 1 , Jo Hockley 1 , Martin Denvir 2 , Dawn Arundel 3 1 University of Edinburgh, General Practice, Edinburgh, United Kingdom 2 Lothian Universities NHS Trust, Edinburgh, United Kingdom 3 Lothian Primary Care NHS Trust, Edinburgh, United Kingdom Aims of the study 1.To explore the experiences of patients with advanced heart failure and their informal carers, and assess the extent to which services meet their needs from diagnosis to death. 2.To integrate the perspectives of key professionals and formulate needs-led models of care for patients with end-stage heart failure Methods • Serial, longitudinal interviews were conducted with 30 patients with advanced heart failure (NYHA grade III/IV), their informal carers (n = 25) and professional carers (n = 39) • Four focus groups were held with professionals and patients/carers to develop recommendations about service models Results Models of care explored included heart failure nurse specialists, palliative care, primary care and geriatricianled care. Key features of effective models include: good quality relationships; continuity of care, with integrated assessment and case management; regular monitoring; supported self-management; flexible role boundaries; anticipatory care planning; carer support; and a range of psychosocial support services. Conclusion End-of-life care for people with heart failure is currently inequitable; effective care can be provided by any service. Training in chronic disease management, supported self-management and the palliative care approach is essential if generalist health professionals are to coordinate heart failure palliative care in the community. 333. ‘Equity of Access’. Provision of a Palliative Care Nurse Specialist Service for Non Malignant Disease Barbara Morgans, Karen Groves West Lancs, Southport & Formby Palliative Care Services, Southport, United Kingdom Specialist Palliative Care Services are often concerned that if they open their doors to those with non malignant disease they will be inundated with referrals and overwhelmed with work. They also fear that their knowledge and skills will not be sufficient to meet the needs of these patient groups. This poster describes the experience and achievements of a New Opportunities Fund funded Palliative Care Nurse Specialist, working across hospital and community within an Integrated Specialist Palliative Care Service, to respond to referrals for patients with non malignant disease and to build a service suitable to their needs. The three year project figures demonstrate the appropriateness and timeliness of the referrals made, the development of a manageable non malignant service within the already existing integrated service and the working relationships developed across boundaries with respiratory, cardiology and neurology specialist services and others, providing continuity of care. 334. Complementing the Community - developing a commmunity complementary therapy service for patients living with end-stage non-malignant disease Nigel Hartley, Elaine Syrett, Sally Hood ST CHRISTOPHER HOSPICE, Allied Health, London, United Kingdom Complementary therapy has proved to offer significant benefits to people affected by terminal cancer. Recognising these benefits, and it’s suitability to those affected by non-malignant end of life diseases, St Christopher’s carried out a three month review of Complementary Therapy Resources available for people living with end-stage non-malignant disease within the St Christophers catchment area. As a result of the initial findings of this review, we developed and provided a Complementary Therapy service for those living with, or affected by, non-malignant disease, as part of the St Christopher’s community outreach programme. A group of specialist palloiative care nurses provided aromatherapy, hypnotherapy, relaxation and stress management, through individual and group sessions to patients, family members and carers, who were referred into the St Christopher’s Hospice Home Care nursing team, or who were accessible via direct referral through their GP or related organisation. The service was provided within the patients home and also within GP surgeries. This presentation will outline the project, highlight the benefits of such therapies being delivered by dual qualified nurses, and also present findings from a research study carried out by Kingston University alongside the programme. 335. Changing Perspectives: From Care of incurably ill to chronically ill - Experience form Northern Kerala, India. Anil Paleri Institute of Palliative Medicine, Palliaitve Care, Calicut, India, India Palliative care teams may not be able to stay away from caring for chronically ill along with incurably ill when there is community participation, as its priorities will reflect in the program and issues are similar. 2 examples are discussed. 1: Participation by a Local Self Government Institution (LSGI) in palliative care programme. In Kerala the responsibility of health is with LSGIs so they could take decisions locally. In Kizhuparamba Panchayath (a LSGI), with a population of 15000, 23 have cancer, 16 are bedridden, 8 have psychiatric illnesses, 8 on antituberculosis therapy & 30 have chronic diseases. The LSGI has evolved a long term care and palliative care program for them. 2: Community Psychiatry Program: Stigma, poor social support and compliance etc. make care of psychiatric patients difficult. Palliative care initiatives in Malappuram District responded to this by having a community psychiatry program. Volunteers are trained to follow up and support these patients. Now there are regular psychiatry OPDs in 9 places, home care and rehabilitation programs. 180 patients are cared for of which 7 are rehabilitated. The examples show that with active community participation the scope of palliative care may be widened to include other chronically ill. Governments can be made to participate in the process when the community has the power to decide for them selves. 336. Improving end of life care for patients considered unsuitable for admission to the ICU: is there a role for the Integrated Care Pathway for the Dying Patient? Alison Roberts 1 , Valerie O’Donnell 1 , Mark Pugh 2 , Richard Swindell 3 1 Lancashire Teaching Hospitals NHS Trust, Palliative Care, Preston, United Kingdom 2 Lancashire Teaching Hospitals NHS Trust, Anaesthesiology & Critical care, Preston, United Kingdom 3 Christie Hospital, Statistics, Manchester, United Kingdom Aims To evaluate whether quality of end of life care, in this patient group, can be improved by the use of the Integrated Care Pathway for the Dying Patient (ICP). Methods A prospective controlled trial comparing care of patients placed on the ICP with those who were not. All patients at the Royal Preston Hospital considered unsuitable for ICU admission, as they were unlikely to survive, were potentially eligible. Using the ICP as a gold-standard, notes were reviewed and family satisfaction with end of life care was rated using a questionnaire which was sent to the patient’s next-of-kin 4 to 6 weeks after death. 126 10th Congress of the European Association for Palliative Care, Budapest, Hungary, 7–9 June 2007
Poster abstracts Results Nineteen patients were eligible, all within the control group. Seven (39%) questionnaires were returned. The median survival following ICU review was 13 (1-126) hours. Patients often had several co-morbidities. High levels of intervention continued in the majority of patients with poor anticipatory prescribing of PRN subcutaneous medications. High levels of satisfaction were reported by respondents for all aspects of care. Discussion regarding the terminal nature of their family member’s illness was less satisfactory. Conclusion This study has been thought provoking, despite not entirely fulfilling the original aim. Although respondents reported high levels of satisfaction with care, the median survival and high levels of intervention suggest the potential for further improvement in care through the introduction of the ICP. 337. Improving end of life care for chronic heart failure patients: let’s hope it’ll get better, when I know in my heart of hearts it won’t? Richard Harding 1 , Lucy Selman 1 , Teresa Beynon 2 , Fiona Hodson 2 , Elaine Coady 2 , Caroline Hazeledene 2 , Irene Higginson 1 1 King’s College London, Department of Palliative care, Policy and Rehabilitation, London, United Kingdom 2 Guy’s and St. Thomas’ NHS Foundation Trust, London, United Kingdom AIM Chronic heart failure (CHF) has high mortality and symptom burden, but scant evidence to guide clinical practice. This study aimed to determine the problems/preferences of CHF patients/families to improve end-of-life CHF care. METHOD Semistructured qualitative interviews with 20 patients (NYHA functional classification III-IV); 11 family carers; 6 palliative clinicians & 6 cardiology clinicians. Transcripts imported into NVIVO & coded line-by-line, coding frame reviewed by research team. RESULTS Patients’ left ventricular ejection fraction range 22.5-50 (mean 34%, SD=8.3). Patients & families reported a wide range of end-of-life preferences, primarily determined by age and functional/cognitive status. None had discussed these with clinicians, and none aware of future care modality choices. Patients & carers reported fear and anxiety, and were uninformed of the implications of diagnosis. Only 2 carers had discussed end-of-life preferences with the patient. Cardiac staff confirmed they rarely raise such issues with patients. Disease-specific barriers (e.g. uncertainty and public perception of the benign nature of CHF) and specialismspecific barriers (Cardiology focus on curative approaches and need for communication training) to improving end-of-life care were identified. CONCLUSION The integrated data provides 3 recommendations to improve care in line with policy directives: sensitive provision of information & discussion of end-of-life; mutual education of cardiology/palliative staff; mutually agreed palliative care referral criteria. 338. MANAGING ADVANCED MOTORNEURONE DISEASE (MND) AT HOME NURIA ARRARAS 1 , MARTA LLOBERA 1 , EVA BARALLAT 1 , RAMONA GONZALEZ 1 , CONCEPCIO TAMARIT 1 , JUDIT PUIG 1 , ANGELS RAMOS 1 , JAUME CANAL 2 1 Hospital Santa Maria, PADES, Lleida, Spain 2 Hospital Jaume d’Urgell, Unitat de Cures Pal.liatives, Balaguer, Spain Introduction Terminal MND patients can be looked after at home if there is a good relationship between primary health care, home care teams and relatives.We describe the interdisciplinary daily working with MND patients by two home care teams. Methods Retrospective and descriptive study. Data were obtained from medical records over a period of one year. We study the following items:1. Social and demographical:Age,gender,diagnosis,distance from home to the health centre. 2. Time from diagnosis. 3. length of follow up. 4. Most prevalent symptoms. 5. Number of visits carried out by each team member. 6. Reason of discharge. 7. Scales: Barthel, Pfeiffer, Karnoffsky. 8. Emotional impact on caregivers evaluated with a categorical scale. Results 27 patients were included . 10 m/17 f.Age from 46 to 78 years.14 patients were diagnosed less than 12 months before first visit. Main symptoms:dysphagia (20), neuropathic pain (15), shortness of breath (15), weakness (24), depression (18). discharge: Death (9), acute hospital (4), nursing home (1), long term unit (4), symptom controlled (4), other (3). Main caregiver: wife/husband (12), brother/brother-in-law (10), others (5). Mean of emotional impact among caregivers 7,67/10. Discussion Admission on the home care programme was not related to the time from diagnosis but of the functional impairment, symptoms and caregivers burnout. Symptom control in terminal MND patients did no differ from oncological terminal patients. MND patients with longer survival receive more specific attention, mainly from physioteraphist 339. A Network Approach to the Formulation of Guidelines for the Management of End-Stage Respiratory Disease Jennifer Smith 1 , Clare Littlewood 2 1 Countess of Chester Hospital, Palliative Care Team, Chester, United Kingdom 2 St Helens and Knowsley Hospitals, Palliative Care Team, Prescot, United Kingdom Aim Patients with end-stage respiratory disease frequently have uncontrolled symptoms and unmet needs.The holistic approach has much to offer.Within Merseyside and Cheshire respiratory medicine,specialist palliative care and primary care have worked collaboratively to improve palliative care (PC) provision. Methodology A “think-tank” event was held,attended by medical and nursing staff from primary and secondary care,patient and carer representatives and managers,to identify PC services of possible benefit to patients with end-stage respiratory disease and effective models of service delivery.This highlighted the need to develop symptom control and referral guidance for appropriate patients and to formulate a regional directory of PC services available for them.Difficulties introducing the concepts of palliative and terminal care to patients and carers and determining prognosis were acknowledged.The need for a joint educational event was identified.A working party with representation from both specialities and primary care was set up to realise the work identified. Results Symptom control and referral guidelines and a regional service directory have been developed.A joint education event was held and was very well received. Conclusion A further educational event and development of information leaflets for patients and carers introducing the concept of PC are planned. 340. The attitudes of critical care staff towards end-of-life care guidance: A survey questionnaire Laura Chapman, Maureen Gambles, Kate Richardson, Tamsin McGlinchey, Deborah Murphy Marie Curie Palliative Care Institute Liverpool, Palliative Care, Liverpool, United Kingdom Staff working in Intensive Care units (ITU) are frequently exposed to dying patients, but this is not reflected in the protocols and guidance available to them. For this reason the Liverpool Care Pathway for the Dying Patient (LCP) was amended through a process of action research for use on ITU, and implemented following an education programme. Aim To assess the attitudes of ITU staff towards the ITU LCP. Method A validated survey questionnaire was distributed to 100 ITU staff of all disciplines and grades. The questionnaire had been developed for use on health care professionals using any integrated care pathways. Responses to statements were recorded on a Likert scale, where 1 = strongly disagree and 5 = strongly agree. The dimensions examined included whether the LCP had a positive effect on clinical practise, its role as a risk management tool and the appropriateness of the format. Results The view of the LCP was positive in all dimensions, with similar scores to those given by hospice nurses completing the same questionnaire. Conclusion The LCP is transferable to an ITU environment, and is seen as positive tool by ITU staff. The questionnaire has also highlighted areas of educational need which can be addressed. 341. Comparisons of the nature and outcomes of referrals to a hospital specialist palliative care team between patients with cancer and noncancer diagnoses. Ruth Flockton, Kate Richardson, Maureen Gambles, John Ellershaw Marie Curie Palliative Care Institute, Liverpool, Liverpool, United Kingdom Aim This project reviews the nature of referrals to a specialist palliative care team in a teaching hospital. We have compared the referrals between patients with a malignant disease and those with a non-malignant disease from 2001 to 2006. Method Data is collected regarding diagnosis, reason for referral, symptoms reported and the outcome of the episode of care. Comparisons have been made between the two patient groups. Results There were 2672 referrals over five years. 16% of referrals had a non-malignant disease. 26.5% of patients with a cancer diagnosis were referred at the time of diagnosis of their illness compared to 16.4% of those with a non-cancer diagnosis. Patients with malignant diseases were most commonly referred for pain control (28.7%). Patients with non-malignant disease were most commonly referred for management of the dying phase (46.8% compared to 12.7% of those with cancer). Patients with a non-cancer diagnosis were more likely to die in hospital (61.3%) than those with a cancer diagnosis (32.7%) and less likely to be transferred to the hospice (3.2% compared to 17.5%). Conclusion This review shows there is a difference in the type of referrals to the palliative care team for patients with cancer and non-cancer diagnoses. There is a role for education of general healthcare providers about the role of specialist palliative care in the management of patients with a non-cancer diagnosis. 342. A study of British Heart FoundationHeart Failure nurse and their current Palliative Care skills and knowledge Deborah O’Hanlon Trinity Hospice, Palliative Care, London, United Kingdom In 2003 NICE guidance recognised the complexity of the needs of heart failure patients and recommended that patients and their carers have access to professionals with palliative care skills within their own heart failure teams. The WHO in 2004 further supported this and suggested that it would be unrealistic to expect the current palliative care workforce to further expand and meet the needs of this increasing patient’s population. Aim.The aim of this study was to explore the palliative care and symptom control knowledge currently held by British Heart Foundation Heart Failure Clinical Nurse Specialist’s in the UK. Identifying gaps in knowledge and educational needs for both the field of palliative care and heart failure were key outcomes.Method.The identified sample was contacted via email informing them of the study. The BHF also informed their nurses of the research and the need for their participation.All were then posted (via first class postage) a survey with a SAE for returning completed to researcher, with the deadline date specified as two weeks.They were then recontacted via email two weeks after the survey was posted, reminding them to return ASAP and were then re-sent the survey.Response rate was 65%.Conclusion.BHF heart failure nurses felt it is their role to provide palliative care to their patients but lack the communication skills, symptom control knowledge, confidence and support to be able to do this effectively. 343. Letter on future care Helen Herz Calvary Health Care Sydney, Palliative Care, Sydney, Australia Motor Neurone Disease (MND) is a relentlessly progressive neuromuscular disease for which there remains no cure. It presents in varying ways, robbing people of the ability to speak or swallow, or of the ability to walk or to breathe independently. cognitive changes may develop. MND progresses and death is usually due to respiratory failure or aspiration pneumonia. It presents a predictable although patient-specific course for which planning is possible. A disease-specific individualised advance directive or ‘letter on future care’ has been in use by the multidisciplnary MND service at Calvary since 2001. It value is as a tool to facilitate discussions on planning future care. The process for discussion was adapted from Oliver et al PalliativeCare in Amyotrophic Lateral Sclerosis however, the end product, the ‘letter on future care’ is not known to be in use elsewhere. The study aims to determine whether the ‘letter’ helps in planning and preparing for death and whether it assists the carer during the bereavement phase. Semi-structured interviews will be held in February/March with two groups of 17 former carers where the person with MND has died. All carers participated in discussions on future care. In one group a ‘letter’ was produced. The interviews will be audiotaped, transcribed and coded using standard qualitative research methods. Themes will be elicited. Characteristic quotes will be identified. Poster abstracts 10th Congress of the European Association for Palliative Care, Budapest, Hungary, 7–9 June 2007 127
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