Memorandum by The End-of-Life Care Research
Group, Vrije Universiteit Brussels
1. THE END-OF-LIFE
CARE RESEARCH
GROUP
— The research programme of the
End-of-life Care Research Group of the Vrije Universiteit Brussel
consists of two inter-related research areas. The first is the
needs and quality of palliative terminal care (PTC). The second
is medical end-of-life decisions (ELDs) that effectively or potentially
shorten the life of patients (eg voluntary euthanasia, physician-assisted
suicide, alleviation of pain and symptoms with a potential life
shortening effect, withholding or withdrawing of life prolonging
treatment, etc).
— The programme includes clinical
and epidemiological studies involving the interdisciplinary study
of PTC and ELDs. The programme builds on a line of research on
end-of-life decisions that has been carried out over the past
six years and resulted in many publications in eg Bioethics, Palliative
Medicine and The Lancet.
— Main topics of the research
programme are medical practice at the end of life in Flanders,
Belgium; the involvement of different caregivers; the decisions
making process; and international comparative studies.
— I can provide a full CV of all
my work and publications on request.
2. THE IMPORTANCE
OF THE
END-OF-LIFE
CARE RESEARCH
GROUP
— Over the past decades, more
than ever, end-of-life care has attracted the interest of the
public, policy makers, and healthcare professionals. Many factors
have contributed to this. In all developed countries, ageing of
the population has resulted in a growing need for geriatric care
in general and specifically end-of-life care, since this groups
accounts for the vast majority of decedents. In addition there
has been a growing recognition in many countries that end of life
care is less than optimal.
— Many dying patients still experience
pain and other symptoms, considerably limiting the quality of
their remaining lifetime. Because of for example, "morphinofobia",
there are indications that all too often physicians withhold sufficient
pain medication for dying patients.[27]
— There is a sense that the health
care systems have failed to educate health care professionals
to provided the adequate services to ensure good care for the
dying.
— Moreover, the intensive discussion
about voluntary euthanasia and physician-assisted death has focused
attention on the care of the dying and the factors that might
spur a patient to request administration of drugs to hasten death.
— In Belgium, uniquely in the
world, the regulation of voluntary euthanasia and the expansion
of palliative care were intimately connected, and co-evolved synergistically.
3. TWO IMPORTANT
STUDIES FOR
THE SELECT
COMMITTEE TO
CONSIDER
— As an experienced researcher
in the area of palliative terminal care (PTC) and end of life
decisions (ELDs), I am a privileged observer of the relevant societal
and legal developments on the issue.
— For this submission there are
two research studies I have been involved in that I would like
to highlight. I attach both these research papers to this memorandum
for your attention.
4. STUDY 1: END
OF LIFE
DECISIONS IN
MEDICAL PRACTICE
IN FLANDERS,
BELGIUM: A
NATIONWIDE STUDY
(DELIENS ET
AL 2000)[28]
— This study examined death certificates
relating to about 2,000 deaths in Flanders, Belgium—before
legislation for voluntary euthanasia came into force.
— We found that the estimated
incidence of voluntary euthanasia in medical practice in Flanders
at this time was 1.1 per cent of all yearly deaths.
— We concluded from this study
that despite voluntary euthanasia being considered murder under
criminal law, it did exist.
— There is some concern about
the pressures that vulnerable people would be exposed to if voluntary
euthanasia were to be legalised. Netherlands data shows that there
is no evidence for this argument.[29]
— In addition, our study found
that voluntary euthanasia was practiced significantly more often
among higher educated patients than among lower educated ones.
This data suggests that contrary to concerns about the so called
"slippery slope", social inequalities of the traditional
sense also exist within voluntary euthanasia practice.
— The rate of termination of life
without explicit request was far higher in this study (3.2 per
cent) than in the Netherlands (0.7 per cent).[30]
— In this study we concluded that
if anything, regulation of voluntary euthanasia appears to be
associated with a reduction of ethically dubious practices of
life termination. This is perhaps because less attention is given
to those requirements of careful end of life practice in a society
with a restrictive approach than in one with an open approach
that tolerates and regulates voluntary euthanasia and physician-assisted
suicide.
5. STUDY 2: END
OF LIFE
DECISION-MAKING
IN SIX
EUROPEAN COUNTRIES:
DESCRIPTIVE STUDY
(VAN DER
HEIDE ET
AL 2003)[31]
— This study involved a European
comparison of ELDs across six countries: the Netherlands, Belgium,
Switzerland, Italy, Sweden and Denmark.
— Data showed that the Netherlands
(followed by Belgium and Switzerland) consistently had the best
communication between physicians and their patients and families
concerning ELDs. This highlights the benefits of an open and transparent
system with regards to ELDs.
— In this study, 92 per cnet of
ELDs in the Netherlands were discussed with competent patients;
followed by 78 per cent in Switzerland and 67 per cent in Belgium.
This is compared to Denmark (58 per cent), Italy (42 per cent)
and Sweden (38 per cent)—countries that have a restrictive
approach to voluntary euthanasia and physician-assisted suicide.
— Where a patient was incompetent,
85 per cent of physicians in the Netherlands. (77 per cent in
Belgium) discussed end of life decisions (including but not exclusive
to life termination without explicit request) with relatives.
This compares to only 39 per cent of cases in Sweden and Italy
and 52 per cent of cases in Denmark.
— This study also serves to show,
again, that the slippery slope has not occurred in the Netherlands.
In this study, in all countries—except the Netherlands—termination
of life without explicit request happened more frequently than
voluntary euthanasia and physician-assisted suicide.
6. TO CONCLUDE
— One of the important motivations
for legally regulating voluntary euthanasia in Belgium was the
high ratio between rates of life termination without explicit
request and voluntary euthanasia (3.2 per cent of all deaths compared
to 1.1 per cent for voluntary euthanasia).
— It is my conclusion that the
question should be not whether voluntary euthanasia is to be part
of end-of-life care (for, whether the practice is legislated for
or not, it already is), but how it is practiced and integrated
into end-of-life care.
— In Belgium, where voluntary
euthanasia now has legislation, the focus of the debate has moved
from an ethical and ideological debate towards the development
of requirements of prudent practice and of guidelines for good
medical practice at the end of life.
— Should you wish to discuss these
issues with me further, please contact me at the above postal
or email address.
August 2004
27 Deliens L Ganzini L, Vander Stichele R, The use
of drugs to hasten death. Pharmacoepidemiologu and Drug Safety
2004; 13, 113-115. Back
28
Deliens L, Mortier F, Bilson J, Cosyns M, Vander Stichele R,
Vanoverloop J, Ingels K, End-of-life decisions in medical practice
in Flanders, Belgium: A nationwide survey. The Lancet 2000;
356: 1806-1811. Back
29
Onwuteaka-Philipsen BD, van der Heide A, Koper D, Keij-Deerenberg
I, Rietjens JA, Rurup ML, Vrakking AM, Georges JJ, Muller MT,
van der Wal G, van der Maas PJ, Voluntary euthanasia and other
end-of-life decisions in the Netherlands in 1990, 1995 and 2001.
The Lancet 2003; 362: 395-399. Back
30
Onwuteaka-Philipsen BD et al Lancet 2003. Back
31
van der Heide A, Deliens L, Faisst K, Nilstun T, Norup M, Paci
E, van der Wal G, van der Maas PJ, End-of-life decision-making
in six European countries: descriptive study. The Lancet
2003; 362: 345-350. Back
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