EAPC - ipac

400 EAPC Abstracts
In addition to the support that EAPC provides with these projects for the
advocacy work of national palliative care associations and for health care
professionals in palliative care EAPC needs to raise the support of the
institutions of the European treaties, the Council of Europe, the European
Commission and the European Parlament to secure the future of palliative
care in Europe. The development of palliative care needs a strong and
ongoing commitment from decision makers in the European institutions
and other national or European stakeholders!
3 Invited Lecture
Plenary Session 1
Translational pain research – From molecular biology to the clinic
Authors: Frank Skorpen Head of Molecular Biology Section of Pain and
Palliation Research Group, Faculty of Medicine, Norwegian University of
Science and Technology NORWAY
The aim of this lecture is to give an overview of the current evidence for a
relationship between polymorphisms in human genes and variability in opioid
analgesia and side effects among patients treated for moderate or severe
pain. Participants will learn how new knowledge from molecular biology
and genetics can help us understand how the individual’s genotype affects
the outcome of opioid treatment. They will also learn about challenges and
opportunities for genetic research in palliative care, and what have to be
overcome before “genetic profiling” can be used as a supplementary tool
for decision-making in the treatment of severe pain. Control of pain and
related symptoms is paramount to clinical success in caring for patients
with advanced cancer and other terminal illnesses. Opioids are the mainstay
of therapy for moderate to severe cancer pain at the end of life, with oral
morphine being recommended by the World Health Organization and the
European Association for Palliative Care as the conventional opioid of
choice. However, in spite of expert recommendations, careful dose escalation
and “optimization” of the management regime, successful opioid treatment
is not attained in a substantial minority of patients. Unpleasant side
effects are usually inevitable, and although side effects may be controllable,
they can not easily be predicted. The integration of molecular genetics
approaches into the study of complex health phenomena is an increasingly
important and available strategy for researchers across the health science
disciplines. In recent years, research investigating the relationship between
the genetic variability among individuals and susceptibility to disease, clinical
symptoms or treatment responses has grown exponentially. With an
estimated number of at least ten millions, single nucleotide polymorphisms
(SNPs) account for about 90% of all molecular differences in the human
DNA sequence. Although many SNPs have no effect on cell function, others
can have a major impact on how humans respond to disease, environmental
exposures, drugs and other therapies, including sensitivity to opioid
therapy. For example, polymorphisms in the µ-opioid receptor gene
(OPRM1) are primary candidate sources of clinical variability in opioid
therapy. Powerful analytical tools now make it possible to screen patients
for their allelic status at very high resolution. However, for genetic information
to be clinically useful, the genotype to phenotype correlations need to
be based on properly measured and well defined end points. The lack of
international standards for the assessment of subjective symptoms and classification
of patients stands out as a major obstacle for the translation of
genetic research into real opioid therapy improvements in palliative care.
4 Plenary presentation
Plenary Session 1
Paying to Die: The Economic Burden of Care Faced by Patients
and Their Caregivers
Authors: Konrad Fassbender Department of Oncology, Health Services
Centre University of Alberta, Grey Nuns Community Hospital CANADA
Carolina Aguilar Department of Clinical Epidemiology & Biostatistics,
McMaster University, Hamilton CANADA
Carleen Brenneis Regional Palliative Care Program, Capital Health
Edmonton CANADA
Robin Fainsinger Department of Oncology, University of Alberta
Edmonton CANADA
Background: Palliative care programs require participation of non-paid caregivers.
The economic burden associated with this paradigm shift however is
unknown. Methods: Prospective questionnaire measuring health care
resource utilization by adult palliative care patients (prognosis between 2 and
24 weeks) between Feb 2004 and June 2007, in Canada. Primary caregivers
were interviewed at baseline and every two weeks thereafter. Resource use,
out-of-pocket expenses and time related losses were measured and valued
according to established guidelines for economic evaluation. Results: A total
of 301 caregiver-patient diads comprised 13.0% of the eligible palliative care
population. Patients averaged 66.2 years of age, of which 55.1% were male.
On average, patients were followed for 64.6 days at baseline (mean=34.3min)
and interviewed a further 2.74 times (mean=8.8min). Patients received care
from an average 1.82 individuals (max=7) providing a total of 91.6hrs of care
per week (or 64.9hrs/caregiver/week). Caregivers’ non-work activities were
severely limited: 69.3% reduction in time spent performing domestic work,
46.3% personal care and 73.2% leisure. More than half of caregivers participated
in the workforce: employed (35.0%) or temporarily absent from their
work (19.5%). One in seven patients (14.3%) receives care from at least one
caregiver experiencing work losses (mean = 17.3 hrs/wk/patient). Assuming
an average wage rate of $23.90 (16.18 EUR), caregiver time related losses are
estimated at $40,329 (27 302 EUR) per patient and exceed the direct medical
and out of-pocket costs. Discussion: Time related costs attributable to the care
of each dying patient are equivalent to the annual wages of a caregiver and
therefore impose a significant burden to families and employers. Inadequate
financial support of dying patients and their families by governments will
jeopardize both the health and economic benefits associated with the continued
growth of palliative care programs.
5 Plenary presentation
Plenary Session 1
Use of advance directives in dementia: the patient’s perspective
Authors: Marike E. de Boer Department of Nursing Home Medicine
Institute for Research in Extramural Medicine NETHERLANDS
Cees Jonker Institute for Research in Extramural Medicine, VU University
Medical Centre Amsterdam NETHERLANDS
Rose-Marie Dröes Department of Psychiatry/Alzheimer Centre, VU
University Medical Centre Amsterdam NETHERLANDS
Cees M.P.M. Hertogh Institute for Research in Extramural Medicine, VU
University Medical Centre Amsterdam NETHERLANDS
Jan A. Eefsting Institute for Research in Extramural Medicine, VU
University Medical Centre Amsterdam NETHERLANDS
Background: Advance directives enable people to manage their future by
expressing their wishes with regard to (end-of-life) care. It is generally
assumed that, if diagnosed in the early stages, people with dementia still
have the necessary capacities to write an advance directive. However, it is
never explored what people with (early) dementia think and expect of the
future and what their views are on advance care planning. Methods: In depth
interviews among elderly people with early stage Alzheimer’s disease (AD)
(n=24) and additional interviews with partners/proxies (n=24) were carried
out and analysed, following the principles of grounded theory. Results:
Results show that most elderly people with (early) AD tend to live by the day
and refrain from thinking about the future. Only a few mention that disclosure
of the diagnosis and information on advance directives, causes them to
start thinking about the future and advance care planning. Those that already
had an advance directive prior to the diagnosis are often not aware of the
existence of the document and its content, which makes it difficult to elicit
their views. Conclusions: Our findings raise questions regarding the relevance
given to advance directives by people with early AD. If advance directives
are considered of importance for people with dementia to exercise their
right to self-determination with regard to advance care planning their