Development of palliative care and legalisation of euthanasia: antagonism or synergy?BMJ 2008; 336 doi: http://dx.doi.org/10.1136/bmj.39497.397257.AD (Published 17 April 2008) Cite this as: BMJ 2008;336:864
- Jan L Bernheim, medical oncologist 12,
- Reginald Deschepper, anthropologist 1,
- Wim Distelmans, palliative care specialist 13,
- Arsène Mullie, palliative care specialist 4,
- Johan Bilsen, health scientist 1,
- Luc Deliens, medical sociologist 15
- 1End of Life Care Research Group, Department of Medical Sociology and Health Sciences, Vrije Universiteit Brussel, Laarbeeklaan 103, 1090 Brussels, Belgium
- 2Department of Human Ecology, Vrije Universiteit Brussel
- 3Department of Palliative Care, Oncological Centre, AZ, Vrije Universiteit Brussel
- 4Federation Palliative Care Flanders, Wemmel, Belgium
- 5Department of Public and Occupational Health, EMGO Institute, VU University Medical Centre Amsterdam, Netherlands
- Correspondence to: J L Bernheim
- Accepted 3 January 2008
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.
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
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.
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.
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
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
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.
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.