Development of palliative care and legalisation of euthanasia: antagonism or synergy?
Peter Brooks
BMJ. I had been aware of some of the work in the Netherlands, but I
hadn't realised that Belgium was so advanced in exploring these
questions:
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BMJ 2008;336:864-867 (19 April), doi:10.1136/bmj.39497.397257.AD
Analysis
Development of palliative care and legalisation of euthanasia:
antagonism or synergy?
Jan L Bernheim, medical oncologist 1,2, Reginald Deschepper,
anthropologist 1, Wim Distelmans, palliative care specialist 1,3,
Arsène Mullie, palliative care specialist 4, Johan Bilsen, health
scientist 1, Luc Deliens, medical sociologist 1,5
1 End of Life Care Research Group, Department of Medical Sociology and
Health Sciences, Vrije Universiteit Brussel, Laarbeeklaan 103, 1090
Brussels, Belgium, 2 Department of Human Ecology, Vrije Universiteit
Brussel, 3 Department of Palliative Care, Oncological Centre, AZ,
Vrije Universiteit Brussel , 4 Federation Palliative Care Flanders,
Wemmel, Belgium, 5 Department of Public and Occupational Health, EMGO
Institute, VU University Medical Centre Amsterdam, Netherlands
Correspondence to: J L Bernheim jan.be...@vub.ac.be
Debates about euthanasia often polarise opinion, but Jan Bernheim and
colleagues describe how in Belgium the two camps grew up side by side
to mutual benefit
Although palliative care and legalised euthanasia are both based on
the medical and ethical values of patient autonomy and caregiver
beneficence and non-maleficence,1 they are often viewed as
antagonistic causes. A popular perception, for instance, is that
palliative care is the province of religiously motivated people and
the advocacy of euthanasia that of agnostics or atheists.2 3 The
European Association for Palliative Care has voiced concerns that
legalising euthanasia would be the start of a slippery slope resulting
in harm to vulnerable patients such as elderly and disabled people and
that it would impede the development of palliative care by appearing
as an alternative.4 Data from the Netherlands and Belgium, where
euthanasia is legal, do not provide any evidence of a slippery slope.5
6 Here, we focus on the effect of the process of legalisation of
euthanasia on palliative care and vice versa by reviewing the
published historical, regulatory, and epidemiological evidence in
Belgium.
History
Detailed accounts of the development of euthanasia and palliative care
in Belgium are available elsewhere,7 8 9 but table 1 gives the main
milestones. Palliative care started developing in the early 1980s, at
the same time as the drive for the legalisation of euthanasia. By 1999
in Europe, Belgium was second only to the United Kingdom in per capita
number of beds for palliative care,10 in 2007 it ranked third of 52
countries in palliative care resources after Iceland and the UK and in
2002 Belgium became the second country to legalise euthanasia.11 12 13
Although the societal debate preceding the passing of the euthanasia
legislation was intense, with a few exceptions, it was not acrimonious.
8 14 15 Advocates of legalisation always supported palliative care and
never presented euthanasia as an alternative. The only claim that they
disputed was that palliative care can always prevent patients from
requesting euthanasia.(13) Proponents of euthanasia argued that,
similar to medical futility, there is also such a thing as palliative
futility. Conversely, most opponents of the legalisation of euthanasia
conceded that in some cases it is ethically acceptable. Some Catholic
palliative care workers accepted the regulation of euthanasia as a
lesser evil than clandestine life termination or palliative futility.
The euthanasia law eventually contained several concessions to
opponents, including restriction to adults with an incurable disease.
The reaction of most opponents was cautious acceptance,7
acknowledgment of the legal and ethical clarity it brought, and a wish
to further refine the regulations.16
Joint development
One of the reasons for the overall lack of acrimony was that the two
movements developed side by side with shared workers. Two of the
founders of Belgium’s first palliative care organisation, Continuing
Care Community, were advocates of the legalisation of euthanasia
(Karel Roelants and JLB). The organisation resulted from joint efforts
of British expatriates and staff at the Université Libre de Bruxelles
and Vrije Universiteit Brussel, whose faculties had been instrumental
in changes such as the promotion of contraception, the legalisation of
abortion, and innovations in assisted reproduction.17 18 Several early
palliative care workers were also active in the two Belgian right to
die societies. The model they proposed was encapsulated by the term
integral palliative care, in which euthanasia is considered as another
option at the end of a palliative care pathway and the patient’s
preferences come first.19 20
From the late 1980s, the medical and paramedical curriculum at Vrije
University included palliative care and euthanasia and students were
assigned to attend ward rounds in the St Jan hospice. Conversely,
Catholic hospitals occasionally referred patients who requested
euthanasia to the Vrije University hospital. The first two chairs of
the Flemish Palliative Care Federation were staff at Vrije University,
one of whom (WD) was a vocal advocate of the legalisation of
euthanasia. Also the first palliative care day care centre in Belgium
was created by university staff who were advocates of legalised
euthanasia.21 LEIFartsen (Life End Information Forum), the network of
volunteer doctors who give advice to colleagues who receive euthanasia
requests, was created by the palliative care department of Vrije
University with the support of the Flemish right to die society. All
LEIF physicians and nurses are trained in palliative care.22 Thus
right from the start shared staff have ensured connection between
palliative care and euthanasia and urged linking of their objectives.
As the societal debate about euthanasia grew, so did provisions for
palliative care.
Legislative concomitance
Parliament passed the euthanasia law in 2002 after it rejected several
amendments aiming to extend or restrict the law. It stipulated that
patients requesting euthanasia must be informed of the possibilities
of palliative care, but did not require a palliative care team to be
consulted before euthanasia, as the Flemish Palliative Care Federation
had wanted.23 The law was passed together with an act positing "the
right to palliative care," perfecting the organisation of palliative
care and doubling its public funding. Every hospital had to have a
palliative care team, and palliative home care was to be available
nationwide.
Parliament also created a Control and Evaluation Commission to which
euthanasia cases must be reported and specified that four of its 16
members be palliative care workers (the others including doctors,
ethicists and lawyers).24 The then president of the Flemish Palliative
Care Federation (WD) was appointed its first co-chair.
Professional response
A few months after the passing of the euthanasia law, the Belgian
Medical Disciplinary Board issued joint guidelines for euthanasia and
palliative care.25 The guidelines broadly endorsed the law and
emphasised the recourse to palliative care before carrying out
euthanasia. The Flemish Scientific Association of General
Practitioners took a similar position.26
The Flemish Palliative Care Federation, intent on avoiding a schism
between palliative care workers, adopted an explicitly pluralistic
stance. It stated: "The view of the patient must be determining" and
that "Palliative care and euthanasia are neither alternatives nor
antagonistic. . . . Euthanasia may . . . be part of palliative
care . . . Caregivers are fully entitled to ethical limitations, but
they must be expected to state these limitations candidly, clearly and
above all in due time."27 Thus, the federation was the first
professional palliative organisation anywhere to acknowledge integral
palliative care, a term also adopted by the Flemish Scientific
Association of General Practitioners.26 In 2006 the federation issued
a typology of medical end of life decisions with a possible or certain
life shortening effect, which included a clear description of the
medical acts and conditions for a good death with euthanasia. The
common conceptual framework further reduces the risk of disagreements
due to semantic differences.
No health professional organisation explicitly opposed the euthanasia
law in Belgium. The ethics committee of the national Caritas network
of Catholic healthcare institutions (which runs over 70% of Belgian
hospitals) drafted a guideline for the application of the euthanasia
law.28 The only substantial differences from the law are a restriction
to terminally ill patients and mandatory consultation with the local
palliative care team.29
Epidemiological data
One more indication of the importance of palliative care in Belgium as
euthanasia received more prominence is that between 2001 and 2005 it
had by far the highest per capita participation in conferences of the
European Association for Palliative Care, even though none took place
in Belgium (figure).30 Further data have come from epidemiological
studies.
In the 1998 Belgian population based death certificate study on
medical end of life decisions with a possible life shortening effect,
the odds ratio for doctors who had been trained in palliative care
whohonoured a patient’s request for euthanasia compared with their
untrained colleagues was 2.07 (95% confidence interval 0.82 to
5.22;table 2).31
A similar study of end of life decisions was conducted in 2001, after
a vigorous societal debate about the legalisation of euthanasia and
further expansion of palliative care.6 32 The overall incidence of end
of life decisions did not change between 1998 (39.3%) and 2001
(38.4%), but the incidence of voluntary euthanasia substantially
decreased (from 1.1% to 0.3%) as did the administering of drugs with
the explicit intention to shorten survival without the patient’s
explicit request (from 3.2% to 1.5%), and symptom control with a life
shortening effect (from 5.3% to 2.8%). End of life decisions were more
frequently discussed with the patients, their relatives, and nurses.
Thus during the developments culminating in the legalisation of
euthanasia, Belgian doctors increasingly observed the tenets of
palliative care.6
Discussion
Within Belgium we found few professional stances contending that
palliative care and legalisation of euthanasia are antagonistic,14 no
slippery slope effects,6 and no evidence for the concern of the
European Association for Palliative Care that the drive to legalise
euthanasia would interfere with the development of palliative care.4
Rather, there were many indications of reciprocity and synergistic
evolution.
Regulatory and professional organisations implicitly or explicitly
endorsed or accepted the concept of integral palliative care,25 26 27
which recognises the right of patients to decide that further
conventional palliative care is futile and to request and obtain
physician assisted death. A substantial proportion of Belgian care
givers seem to consider euthanasia as a medical act that, with due
prudence, is in line with their commitment to palliative care.33 Thus,
the process of legalisation of euthanasia was ethically,
professionally, politically, and financially linked to the development
of palliative care.
The fact that Belgium is among the countries with the most developed
provisions for palliative care (although there is still substantial
need for improvement), and the second country to legalise euthanasia
seems to be neither paradoxical nor fortuitous. Shared workers and
political reciprocity in a country which has institutionalised
cultural, religious, philosophical, and ethical pluralism contributed
to positive feedbacks between both developments. Beyond that, the
societal debates made clear that most values of palliative care
workers and advocates of euthanasia are shared.1 19 If Belgium’s
experience applies elsewhere, advocates of the legalisation of
euthanasia have every reason to promote palliative care, and activists
for palliative care need not oppose the legalisation of euthanasia.
Summary points
Palliative care and legalisation of euthanasia are widely viewed as
antagonistic societal developments and causes
Belgium was the second country to legalise euthanasia but also has
among the best developed palliative care
Advocates for legalisation of euthanasia worked in palliative care and
vice versa
Adequate palliative care made the legalisation of euthanasia ethically
and politically acceptable
The development of palliative care and the process of legalisation of
euthanasia can be mutually reinforcing
This study is dedicated to the memory of Henk Pelser (Amsterdam) and
Yvon Kenis (Brussels), humanist physicians. We thank Carlos Centeno-
Cortes, Heidi Blumhuber, Etienne De Groot, Ruddy Verbinnen, and Léon
Favyts for historical information. Johan Vanoverloop did the
statistical calculations. We thank Dina Declerck, Paul Schotsmans, and
Bert Vanderhaeghen for critical comments and Jane R Mayes for
corrections in the manuscript.
Contributors and sources: JLB and WD were actors in both the
palliative care and legalisation of euthanasia movements and explicit
promoters of the synergy idea. AM is the head of the regional
palliative care network of Bruge and president of the Flemish
Palliative Care Federation. The article is based on historical
records, epidemiological studies, regulatory guidelines, scientific
and lay press publications by advocates and opponents of the
legalisation of euthanasia, and personal experience of the clinicians.
We presented our data and arguments at various national and
international scientific and professional palliative care meetings
including the International Association of Bioethics and the European
Association for Palliative Care. JLB took the initiative for this
paper, wrote it, and consulted the other authors to improve it. RD,
JB, LD provided much of the epidemiological data. JLB is the
guarantor.
Funding: Supported by Grant No HOA2, Vrije Universiteit Brussel.
Competing interests: None declared.
Provenance and peer review: Not commissioned; externally peer
reviewed.
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