Belgium: Mandatory Referral for Euthanasia

Sean Murphy*

Introduction

All Documents

The Flemish Palliative Care Federation is silent on the issue of referral, but the joint statement asserts that an objecting physician must not only give patients timely notice of his position, but must "organise a smooth referral." At another point the joint statement insists that an objecting physician work together with the patient to find a willing colleague.

Belgium legalized euthanasia (not assisted suicide) in September, 2002 for persons, not necessarily terminally ill, who are in "constant and unbearable physical or mental suffering that cannot be alleviated."1 The Euthanasia Act (S. 14) provides that physicians cannot be compelled to perform euthanasia and other persons cannot be forced to assist in it. It also requires that a physician who declines to perform euthanasia must transfer the patient's medical file to a physician or person designated by the patient if requested to do so, but there is no requirement to refer or otherwise actively facilitate the procedure.

A knowledgeable professional later told a British House of Lords committee that fewer than 50% of Belgian physicians and less than 80% of the public were in favour of euthanasia when the euthanasia bill was introduced.2 Both he and another Belgian commentator attributed its introduction and swift passage not to needs expressed by patients and the medical community, but primarily to politics: a change of government and later political exigencies.3

Given these circumstances, it is not surprising that the release of a joint Policy Statement on End of Life Decisions and Euthanasia in December, 2003 was accompanied by reports that many general practitioners were unfamiliar or uncomfortable with the relatively new euthanasia law, and that a "change of attitude" was required "from many doctors."4The signatories to the joint statement were the Belgian Association of General Practitioners, the Academic Centre for General Practice at the Catholic University of Leuven and the Department of General Practice at the University of Ghent. The document made a number of claims that raised important questions about freedom of conscience among health care workers:

• euthanasia is part of palliative care;
• physicians must ensure that patients are given information that allows them to opt for euthanasia;
• physicians who object to euthanasia are obliged to refer patients for the procedure.

Thus, the Project initiated correspondence about the joint statement with the designated contact at the Belgian Association of General Practitioners.5 Unfortunately, after an initial response,6 the Association did not respond to the Project's further efforts to continue the discussion.7 The correspondence is offered in English and Dutch to encourage international dialogue on an important subject.

Frequency of euthanasia in Belgium

During the first year of legalization about 200 cases were reported8 Fifteen months after the law was passed there had been an average of about 20 cases per month, and 30 cases per month by April, 2005.9

60% of the euthanasia occurred in hospitals,10 which employ about half the people working in the health care sector.11While this suggests that the procedure may be encountered by a large number of health care workers, the only medical professionals legally authorized to perform euthanasia are physicians.

Based the figures from Table A and a monthly rate of 30 reported euthanasia cases (360 annually), each requiring the participation of at least two doctors, a Belgian doctor with a practice has less than a 1% chance of participating in euthanasia over the course of a year, rising over five years to over 4%.

It is appropriate to consider the situation of pharmacists, since they dispense the drugs required for euth 13 Based on the current euthanasia rate, each of Belgium's 11,775 pharmacists has a 3% chance of being asked to supply drugs for euthanasia during one year of practice: 30% over ten years. It is interesting to note that, though physicians are the usual focus of attention in the health care sector when euthanasia is discussed, there is a higher probability that a pharmacist will be asked to facilitate the procedure.

These estimates do not take into account factors that might increase or decrease the probability in different locations or in different kinds of medical practice or specialties, nor the possibility that the actual number of euthanasia cases may be two to five times higher than those reported. 14

"Change of attitude:" euthanasia as palliative care

The joint statement opens with the assertion that a GP's responsibilities include "[t]erminal care and all the medical decisions associated with it." Bearing in mind the loss of precision that can accompany translation, one should not read too much into this. "Terminal care" need not be understood as implying either euthanasia or assisted suicide.

The second policy position in the joint statement is unambiguously controversial:

Euthanasia is one of the possible choices in terminal care and must be framed by and embedded in total palliative care that transcends individual care.

And later:

Euthanasia can be a possible choice in terminal care, framed by and embedded in a palliative total care approach.

This is the goal of euthanasia advocates like Michael Irwin, a British physician who has been struck from the role of practitioners for attempting to help a terminally ill friend commit suicide. "I think," he told a BBC interviewer, "that physician assisted suicide should be an option within good palliative care services."15

In correspondence with the Association, the Project pointed out that palliative care is widely understood as "the relief of the burden of pain and suffering caused by disease so that patients live comfortably until they die" - not causing the death of a patient - and that the proposed redefinition of 'palliative care' would have significant consequences for anyone working in the field.  The Association replied that it does not accept such a "dichotomous vision (palliative care vs. euthanasia)," but prefers a "broader" definition that takes fuller account of "the patient's perception." By way of explanation, it quoted from a statement issued by the Flemish Palliative Care Federation in September, 2003 (Federatie Palliatieve Zorg Vlaanderen - FPZV):

Palliative care and euthanasia are neither alternatives nor opposites. When a doctor is prepared to accede to the euthanasia request of a patient who continues to find life unbearable despite the best treatment, then there is no gap between the palliative care given previously by the doctor and the euthanasia he applies now; on the contrary. In such a case, euthanasia forms part of the palliative care with which the doctor and the care team surround the patient and his or her nearest. . .16

. . . in the context of a euthanasia request, carers and patients can expect the palliative teams to do more than merely inform them about potential palliative alternatives and palliative support where necessary. Carers and patients can also address themselves to the networks and teams for information and support directly related to euthanasia and the Euthanasia Act. Team doctors can take on the role of the 'other' or 'second' doctor in the euthanasia procedure.17

It appears that this statement reflects a significant shift from the earlier position of the Federation, which had originally argued that palliative consultation should precede steps taken toward euthanasia, be confined to the discussion of "possible palliative alternatives," and not include a review of a euthanasia request. One reason given for maintaining this division of responsibilities was to ensure that the public would not confuse euthanasia with palliative care.18 Given its acceptance of euthanasia as an aspect of palliative care, it seems the distinction ceased to be important.

The shift is also reflected in a broadened view of multidisciplinary collaboration. The FPVZ first emphasized this because it recognized that no single physician could provide palliative care alone, and that few had sufficient expertise in palliative medicine to adequately advise or meet the needs of the patient.19 This concern remains evident in the joint statement from the Association and universities, but to it is added a desire, twice repeated, to avoid polarization within the medical profession, possibly between those who support euthanasia and those who do not. Thus, palliative care team members are said to be available for consultation about euthanasia. It is also noteworthy that the Association and universities are collaborating with LevensEinde Informatie Forum (LEIF: Life'sEnd Information Forum20), which was described by Prof. Bart van den Eynden as a group of about 200 doctors who are promoting their availability for euthanasia.21 In sum, the multidisciplinary approach that was originally associated to the need for assistance in palliative care now includes physicians with expertise in euthanasia.

The dissolution of conceptual boundaries between euthanasia and palliative care is further illustrated by the FPZV's suggestion that a member of a palliative care team might act as the second physician in processing a euthanasia request under Belgian law.22 Paradoxically, the FPZV insists that palliative care doctors should not actually carry out euthanasia. But if euthanasia is part of palliative care, so that a palliative care physician might support a euthanasia request, it is not at all clear why palliative care physicians should not directly participate in the procedure. Indeed, the rationale offered for this division of responsibilities seems incoherent.23 Such a division can only be justified by maintaining the kind of distinction between palliative care and euthanasia denied by the FPZV statement.

Consistent with the view that euthanasia is part of a "palliative total care approach," the joint statement opposes the establishment of euthanasia teams or facilities and argues against the concept of euthanasia as a form of treatment distinct from other kinds of medical interventions. Instead, it recommends that the second physician involved in the euthanasia process  have "extensive expertise in the area of palliative total care within the framework of euthanasia decision-making,"  which is consistent with the later view of the FPZV that the second doctor might be a member of a palliative care team.

Euthanasia vs. palliative care

The incorporation of euthanasia into a continuum of care that no longer distinguishes between palliation and deliberately causing death is inconsistent with internationally accepted concepts. Almost 90% of 2,200 palliative caregivers polled in Europe in 1999 rejected euthanasia.24Neither euthanasia nor assisted suicide is included in the World Health Organization's definition of palliative care, which explicitly excludes hastening death:

Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care . . . intends neither to hasten nor postpone death."25

Similarly, there is no reference to euthanasia in the definition offered in the Oxford Textbook of Palliative Medicine, which describes palliative care as "the study and management of patients with active, progressive, far-advanced disease for whom the prognosis is limited and the focus of care is on the quality of life."26 The American Academy of Hospice and Palliative Medicine addressed the issues of euthanasia and assisted suicide in a formal statement that avoided judgement on the morality of the procedures but affirmed that " the appropriate response to the request for physician-assisted suicide is to increase care with the intent to relieve suffering, not to deliberately cause death."27 And, rejecting the concept of "euthanasia as the final stage of good palliative care," Canadian Professor Margaret Somerville, founding director of the McGill Centre for Medicine, Ethics and Law at McGill University, wrote that the idea "is an example of putting a 'medical cloak' on euthanasia," in order to make it seem ethically acceptable and safeguarded, that is, not open to abuse. It also confuses the moral, ethical and legal differences between euthanasia and good palliative care, in particular necessary pain relief treatment and refusals of life-prolonging treatment. Somerville points out that if euthanasia is to be practised, there are strong arguments for separating the procedure from the practice of medicine altogether.28

Somerville's comment clearly reflects an anti-euthanasia position, but it is a view shared by innumerable health care workers and arguably reflects a vision of palliative care that is closer to that articulated by the World Health Organization, "dichotomous" though it may be with respect to euthanasia.

Legalization of euthanasia or assisted suicide cannot help but affect health care workers who share Somerville's views, especially if the procedures are incorporated into "normal health care" rather than introduced as a specialty and/or provided through specialized facilities. However, the potential for conflict will be considerably greater if legalization leads to the redefinition of palliative care advocated by the Belgian universities and professional associations.

Communication and informed consent

The joint statement offers some sound suggestions about physician-patient communications:

• objecting physicians should give timely notice of their views to patients;
• professional associations should assist in developing strategies that will allow objecting physicians to deal with requests for euthanasia in a manner that is respectful of the patient and consistent with their own principles;
• end-of-life discussions should be recorded in the patient's medical file;
• an "information and communication contract" might be used to document the physician-patient understanding of end-of-life issues.

Applying the principle of "informed consent" or "informed choice," the Association would have physicians discuss "all possibilities" with a patient "so that he or she can make a well-informed choice for euthanasia."  In this context one also encounters the euthanasia-palliative care connection:

In certain situations, the physician must initiate this discussion himself to avoid a situation where less-informed patients or patients with limited communication skills are denied their right to request euthanasia. In the palliative care phase, these details are transferred to the palliative care record.

The expectation is not simply that physicians respond to patient requests for information about euthanasia, but that euthanasia be proposed as an option to every patient in what might be called "approaching end-of-life circumstances," whether or not the patient has expressed interest in it. This is rather like requiring physicians to propose abortion to every woman found to be pregnant, as if every pregnant woman ought to contemplate having an abortion and would be pleased to be reminded by her physician that it is an option.

Granted that a patient must know that euthanasia is available in order to be able to make a choice for or against it, the wording of the policy -"so that he or she can make a well-informed choice for euthanasia" and to ensure that patients are not "denied their right to request euthanasia" - seems to reflect a lack of balance. It suggests a greater interest in marketing a newly available procedure than in simply presenting information so that a patient can make a choice.

On the other hand, the wording might reflect a concern that patients may be unaware that euthanasia is available, even though the legalization of the procedure was widely publicized and accompanied by controversy. In that case, as time passes and knowledge of the legality and availability of the procedure becomes more widespread, one would find less justification for a presumption of ignorance.

It is often argued that no moral culpability can be attached to the mere provision of information to a patient. That this is not necessarily true is demonstrated by the suspension of a British doctor solely because he provided information to two 'undercover' journalists about how to obtain a kidney transplant from a live donor through the organ trade abroad. Britain's General Medical Council ruled that he had not participated in the trade, but that he had encouraged it by answering questions about it.29  It appears to have been the view of the General Medical Council that a physician should not volunteer information or offer advice that would suggest to a patient that the purchase of organs from a live donor is morally or ethically acceptable.

The communication problem faced by health care workers who object to euthanasia for reasons of conscience is to avoid acting or speaking in a way that is false to their convictions about the moral nature of the act, while providing the information required by law or by prevailing ethical opinion. The patient may choose euthanasia, but a conscientious objector generally does not wish to positively contribute to that choice, for to do so would compromise his personal integrity. At the same time, an objector ought to be aware that he may positively contribute to a choice for euthanasia by alienating the patient.

Nonetheless, physician-patient communication about euthanasia in Belgium may be less complicated than analogous communication about abortion in North America. While the Belgian Law Regarding the Rights of the Patient compels physicians to inform patients about euthanasia,30 the Association explained that an objecting doctor is free to inform the patient of his moral position and to express an opinion about the moral acceptability of the patient's choice. "Thus," wrote the Association, "moral neutrality does not exist in respect of a euthanasia request."

In contrast, North American physicians who object to abortion are sometimes accused of acting unethically and being "judgmental" simply because they explain their objections to a patient. One is sometimes left with the impression that the accusers want objectors to falsify their views by presenting abortion as a morally neutral choice.31 This would nullify the objector's moral outlook in favour of their own, under the guise of 'neutrality'. Professor J. Budziszewski, an advisor to the Protection of Conscience Project, describes such 'neutrality' as "bad-faith authoritarianism... a dishonest way of advancing a moral view by pretending to have no moral view."32 It is gratifying, in this respect, to see what seems to be a more open and honest approach in Belgium.

Mandatory referral for euthanasia

As noted previously, if a patient seeking euthanasia asks an objecting physician to send his medical file to another doctor, the Belgian Euthanasia Act requires the objector to do so. However, contrary to assertions made by Prof. van den Endyn,33 the law does not require more active facilitation of the procedure. The Flemish Palliative Care Federation is silent on the issue of referral, but the joint statement asserts that an objecting physician must not only give patients timely notice of his position, but must "organise a smooth referral." At another point the joint statement insists that an objecting physician work together with the patient to find a willing colleague. The experience of the Project is that most conscientious objectors to euthanasia would refuse to do this because they would see it as active and morally culpable collaboration in the act.

When questioned about the policy of mandatory referral, the Association replied that it would be sufficient if a physician were to advise the patient of the availability of an official telephone "help-line" that provides information about accessing euthanasia services and other end-of-life information, so that the patient would not be "left in the lurch." While this seems a far less stringent requirement, the joint statement remains unchanged, and, by ceasing correspondence, the Association declined to explain which was the official position of the joint signatories: mandatory referral, as set out in the joint statement, or the "help-line" option proposed in its letter.

Autonomy, informed consent and shared decision making

"Accepting the autonomy of the patient" is the underlying principle that must inform discussion of euthanasia, according to the joint statement, which also stresses, in English, "informed consent" and "shared decision making" ["Communicatie en overleg vormen de kern van het 'informed consent', de 'shared decision making' . . ."]. This suggests that the document has been strongly influenced by North American or English sources, as yet unidentified by the Association or universities.

"Autonomy," "informed consent" and "shared decision making" have, unfortunately, become terms of art for opponents of freedom of conscience in health care, particularly with respect to contraception and abortion. For example, a medical student who was unwilling to perform abortions, prescribe oral contraceptives or refer patients for these services was given a failing grade by a preceptor who stated that he had denied "[t]he patient's right to autonomy and participation in the decision-making process." 34

Social critic and constitutional lawyer Iain Benson has criticized this one-sided view of autonomy:

There is no good reason . . . to advocate that a patient's autonomy should trump the autonomy of the professional health-care worker just because the two views conflict. What is needed . . .is an examination of how to accommodate conscience and religious views within the contemporary technocratic and often implicitly anti-religious paradigm of certain aspects of modern medicine. . . .An analytical framework of some sophistication is necessary to ensure maximal respect for and accommodation of differing views in society. . .

The real issue, where there is a conflict of views between people regarding involvement with a procedure or drug, is not settled by reference to one person's "autonomy" but by reference to another principle, that of "justice" (defined as "rendering a person their due…"). For it is there, in the order of justice, that competing claims must be reconciled . . . 35

The concept of "shared decision making" - oversimplified within the context of the joint statement - is inapplicable in cases of conscientious objection. There can be joint deliberation, but if, in the end, there is a fundamental disagreement about what the patient wants and the physician is willing to provide, all that remains is an agreement to disagree and a parting of ways.36

A lesson for other countries

Belgium is a small country, one of only four jurisdictions worldwide where euthanasia or assisted suicide is legal. Nonetheless, no one concerned with freedom of conscience for health care workers can afford to take lightly the fact that a professional medical organization and two universities, one of them Catholic, now advocate the incorporation of euthanasia into palliative care and demand that objecting physicians facilitate euthanasia by referral. Unchallenged, this precedent will be cited to undermine freedom of conscience in other countries, where the kind of arguments and claims found in the joint statement are already being used for that purpose.

Notes

1.    "The Belgian Act on Euthanasia of 28 May, 2002,  Unofficial translation by Dale Kidd under the supervision of Prof. Herman Nys, Centre for Biomedical Ethics and Law, Catholic University of Leuven, Belgium." (2002) 9:2-3 Ethical Perspectives at 182, s 3§1.

2.    UK, HL, Committee on Assisted Dying for the Terminally Ill Bill, Minutes of Evidence: Examination of Witnesses (13 January, 2005) [House of Lords 2005], Questions 1880-1899 at Q1881 (Professor Bart van den Eynden).  Professor Bart van den Eynden is a Professor in Palliative Care at Antwerp University and a palliative care physician responsible for a 12 bed palliative care unit and of the palliative support team covering 1,000 acute hospital beds in Antwerp. He is an alternate on Belgium's 16 member Federal Inspection and Evaluation Committee on Euthanasia.

3.    "[T]he whole movement for legislation of euthanasia in Belgium did not arise from a real caring for the suffering patient but started as a political concern and turned into an ideological debate with two opposite camps." House of Lords 2005, supra note 2, Questions 1855-1859 at Q1855 (Professor Bart van den Eynden).  See also Bert Broeckaert & Rien Janssens, "Palliative Care and Euthanasia: Belgian and Dutch Perspectives"(2002) 9:2-3 Ethical Perspectives 156 [Broeckaert-Janssens 2002].

4.    "GPs 'must change attitude' over euthanasia", Expatica (5 December, 2003).

5.    Letter from Sean Murphy, Administrator, Protection of Conscience Project to the Belgian Association of General Practitioners (23 July, 2004).

6.    Letter from the Belgian Association of General Practitioners to the Administrator, Protection of Conscience Project (24 August, 2004).

7.    Letter from Sean Murphy, Administrator, Protection of Conscience Project to the Belgian Association of General Practitioners (6 October, 2004); Letter from Sean Murphy, Administrator, Protection of Conscience Project to the Belgian Association of General Practitioners (25 April, 2005): Sent again by email on 29 September 2005.

8.    "Euthanasia for 200 in first year", Expatica (25 November, 2003).

9.    "One Belgian dies each day from euthanasia procedures", Expatica (21 April, 2005).

10.    Ibid.

11.    M Moens, "Maintenance and Improvement of quality health care: The Belgian Health Care System Revisited" (Paper delivered at the symposium on the Maintenance and Improvement of Quality Health Care, Brussels, 27 September, 2003).

12.    Ibid at Table 5.

13.    "Belgian euthanasia cases 'exceed official reports.'" Expatica (6 September, 2005) [Expatica 06-09-2005].

14.    "There are assumptions that it is the same quantity as it is in The Netherlands. It means that at least 50 per cent is not reported and maybe it is more, but because it is not reported you do not know." House of Lords 2005, supra note 2, Questions 1860-1879 at Q1866 (Professor Bart van den Eynden).  Federal Control and Evaluation Commission chief Wim Distelmans suggested that, based upon Dutch experience, the actual number of Belgian euthanasia cases each month is 150, five times the reported number. Quoted in Expatica 06-09-2005, supra note 13.

15.    "Interview of Michael Irwin", Outlook: BBC World Service (19 October, 2005).

16.    Federatie Palliatieve Zorg Vlaanderen, Omgaan met euthanasie en andere vormen van medisch begeleid sterven, Vilvoorde, Belgium: FPZV (6 September, 2003) [FPZV 2003] at point 1 (see translation).

17.    Ibid at point 7.

18.    Broeckaert-Janssens 2002, supra note 3.

19.    Ibid.

20.   LevensEinde InformatieForum (website).

21.    House of Lords 2005, supra note 2, Questions 1860-1879 at Q1862 (Professor Bart van den Eynden).

22.    Here, again, the statement differs from the earlier position of the Federation, as described in Broeckaert-Janssens 2002, supra note 2. The FPVZ had successfully argued that the role of the second physician in the euthanasia process be expanded from simply confirming the incurability of the patient's illness to confirming that the patient's mental or physical suffering cannot be alleviated, but had not suggested that a member of the palliative team would act as the second physician processing a euthanasia request.

23.    The Federation argues that direct participation would completely contradict "the emphasis we wish to place on the continuity of the healthcare and emancipatory concern incorporated into the organisation of Flemish palliative care: the basic principle that organised palliative care exists to inform and to support and not to act in the place of normal healthcare." The "emancipatory concern" appears to be the desire to avoid "pseudo-choices" for euthanasia: decisions that are not actually freely made because the patient has been given no clear palliative alternative and is thus constrained in his choices. If so, it is not clear how this relates to what follows.

24.    Rien Janssens et al, "Palliative Care in Europe. Towards a more comprehensive understanding" (2001) 8:1 European Journal of Palliative Care 20. Cited in Broeckaert-Janssens 2002, supra note 2.

25.    World Health Organization (WHO), WHO Definition of Palliative Care, Geneva: WHO (2003).

26.    D Doyle, G Hanks & N MacDonald, Oxford Textbook of Palliative Medicine (Oxford: University Press, 1993. Quoted in CAPCManual: How to Establish A Palliative Care Program, ed by CF von Gunten et al (New York, NY: Center to Advance Palliative Care, 2001; Center for Palliative Studies, San Diego Hospice, San Diego, CA; The Department of Pain Medicine and Palliative Care, Beth Israel Medical Center, New York, NY, 2001).

27.    American Academy of Hospice and Palliative Medicine, Comprehensive End-of-Life Care and Physician-Assisted Suicide, Glenview, IL: AAHPM (25 June, 1997).

28.    Margaret Somerville, Death Talk: The Case against Euthanasia and Physician Assisted Suicide (Montreal: McGill-Queen's University Press, 2001) at 124, quoting T. Quill,"The Case for Euthanasia," "Searching for the 'Soul' of Euthanasia," 11th International Congress on Care of the Terminally Ill, Montreal, 1996.

29.    "Organ Trade GP suspended", BBC News (15 October, 2002). See also Owen Dyer, "Organ trafficking prompts UK review of payments for donors", (2002) 325:7370 BMJ 924.

30.    Wet betreffende de rechten van de patiënt, Art.8.§ 2 (see translation).

31.    Sean Murphy, "Planned Parenthood and "Anti-Choice" Rhetoric" (19 August, 2004), Protection of Conscience Project News (website).

32.    Jay Budziszewski, "Handling Issues of Conscience" (1999) 3:2 The Newman Rambler.

33.    House of Lords 2005, supra note 2, Questions 1860-1879 at Q1861 (Professor Bart van den Eynden).

34.    Document quoted in Project Report 2004-01 (Restricted circulation)

35.    Iain T Benson, "Autonomy", "Justice" and the Legal Requirement to Accommodate the Conscience and Religious Beliefs of Professionals in Health Care (2001) Protection of Conscience Project (website).

36.    C Charles, A Gafni & T Whelan"Shared decision making in the medical encounter: what does it mean? (or, it takes at least two to tango)." (1997) 44:5 Social Science and Medicine 44, 681-692. In a later paper on the same subject, the authors stated: "If a physician cannot, in good conscience, endorse the patient's preference, then there is no agreement on the decision to implement even though the deliberation process was shared . . . patients face constraints in that their preferences . . . can only be implemented if a physician agrees to do so. On the other hand . . . A patient turned down by one physician can make the same treatment request to another . . . A refusal from the first physician does not preclude her from receiving the desired services from the second." Cathy Charles, Amiram Gafni & Tim Whelan,"Shared decision-making in the physician-patient encounter: revisiting the shared treatment decision-making model." (1999) 49:5 Social Science and Medicine 651-661.