Euthanasia policy and practice in Belgium: critical observations and suggestions for improvement.

• Author: Cohen-Almagor, Raphael

This article investigates and discusses the practice of euthanasia in Belgium. Its methodology is based on critical review of the literature supplemented by interviews I conducted in Belgium with leading scholars and practitioners in February 2003 and February 2005. The interviews were conducted in English, usually in the interviewees' offices. The interviews were semi-structured. I began with a list of twenty-four questions (see Appendix), but did not insist on answers to all of them if I saw that the interviewee preferred to speak about subjects that were not included in the original questionnaire. The length of interviews varied from one to two and a half hours.

After completing the first draft I sent the manuscript to my interviewees as well as to some leading experts for critical review and comments. The comments received were integrated into this final version of the essay. In 2008, while writing the final draft, I approached my interviewees and some other well-known experts and invited their comments and updates. Responses received by mid-January 2009 were integrated into the article.

This article provides background information about the context of euthanasia in Belgium. I then discuss the Belgian euthanasia law and concerns about the law, its practice and interpretations. Finally, I discuss the major developments and controversies since the law went into effect. Suggestions as to how to improve the Belgian law and practice of euthanasia are made, urging the Belgian legislators and medical establishment to reflect and study so as to prevent potential abuse. The Appendix contains my questionnaire.

Background

Organized action in favor of the legislation of euthanasia started in Belgium in the 1980s with the foundation of the Association beige pour le droit de mourir dans la dignite (Belgian Association for the Right to Die with Dignity) (1981) and its Flemish counterpart Vereniging voor bet recht op waardig sterven (Association for the Right to Die with Dignity) (1983). Some ten years later, the debate had reached parliament. During the parliamentary session 1995-1996 euthanasia bills were submitted to the senate by four members of parliament. Indeed, since 1995, legalization of euthanasia has been intensely debated by the media, scholars, the official Advisory Committee on Bioethics as well as by the Belgian Parliament. At that time, the Belgian Comite consultatif de Bioethique (Consultative Committee on Bioethics) was founded to advise the federal and "community" governments and parliaments on bioethical issues. This Committee was composed of thirty-five members and thirty-five substitute members; among them medical doctors, nurses, magistrates, lawyers, social scientists, moral philosophers and theologians. The very first assignment, proposed by the presidents of the Chamber and the Senate, was to give advice concerning proposed euthanasia bills. (2)

Although the members disagreed on the fundamental questions, there was complete unanimity on the following topics: (a) The Dutch definition was adopted: "euthanasia is the intentional taking of someone's life by another, on his request"; (b) It follows that this definition does not apply in the case of incompetent people; there the proposed terminology is "termination of life of incompetent people"; (c) More importantly, the act of stopping a pointless (futile) treatment is not euthanasia and it was recommended that the expression "passive euthanasia" not be used in these cases; and (d) What was sometimes called "indirect euthanasia," increasing the dosage of analgesics with a possible effect of shortening life, is also clearly distinguished from euthanasia proper. (3)

The Dutch experience was considered to be a good example to follow in Belgium. On November 28, 2000, the Dutch Lower House of parliament, by a vote of 104 to 40, approved the legalization of euthanasia. On April 10, 2001 the Dutch Upper House of parliament voted to legalize euthanasia, making the Netherlands the first and at that time only country in the world to legalize euthanasia. Forty-six members of the seventy-five seat Senate voted for the Termination of Life on Request and Assistance with Suicide Act; twenty-eight voted against; one member was not present. A year later, in April 2002, the law went into effect. (4)

Belgium debated whether to follow the euthanasia path of its Dutch neighbor. For some time, there were no formal registration and authorization procedures for end-of-life decisions in medical practice. Although euthanasia was illegal and treated as intentionally causing death under criminal law, prosecutions were unusual and, generally speaking, the practice of euthanasia was tolerated. Proposals to remove euthanasia from the criminal law had angered doctors who claimed they had not been properly consulted. Dr. Marc Moens, chairperson of the Belgian Association of Doctors Syndicates (BVAS), which comprised two thirds of the country's 40,000 doctors, argued that abolishing the law on euthanasia would do nothing to prevent abuses, but would make "the exception the rule." (5) Euthanasia is the exception. Caring for life should continue to be the rule.

Studies have shown that more than one in ten deaths among the country's ten million people is the result of "informal" euthanasia, where doctors gave patients drugs to hasten their deaths. (6) A study conducted in Flanders (the Dutch-Flemish speaking part of Belgium) in 1998 showed that despite lack of legislation permitting euthanasia, end-of-life decisions were common among general practitioners in Flanders, and that the frequency of deaths preceded by an end-of-life decision was similar to that in the Netherlands. In Flanders, where sixty percent of the population resides, more than five percent of all deaths in general practice (an estimated 1200 cases) resulted from the use of drugs with the explicit intention of shortening the patient's life. (7) The rate of administration of lethal drugs to patients without their explicit request was according to one research paper 3.2 percent (8) and according to another published article, stemming from the same study, 3.8 percent, three times more frequent than euthanasia. (9) That is, more than three in 100 deaths in Belgium's northern Flemish region every year were the result of lethal injection without the patient's request. (10) Luc Deliens, medical sociologist and one of the authors of this study, said that countries that lack euthanasia law have more cases of ending life without patients' request than real euthanasia cases (on explicit request of the patient). (11) This is, of course, a contested argument that needs to be backed by concrete evidence that Deliens did not produce. At the same time, Deliens and colleagues wrote in an accompanying paper on the use of drugs for euthanasia that their study results indicated an inconsistent, poorly documented and substandard medical approach to euthanasia in Flanders. (12) Interestingly, among the twenty-five observed euthanasia cases in the study, three physicians reported an explicit request by the patient and, at the same time, the patient's incompetence. (13) Confusion among physicians was present in the end-of-life decision-making process. I will return to this disturbing phenomenon of ending patients' lives without their unequivocal request later on.

The Flanders study also showed that the incidence of euthanasia and physician-assisted suicide (PAS) was 1.5 percent. (14) In Belgium, unlike the Netherlands, the law only regulates euthanasia. It does not regulate PAS. In most cases euthanasia and PAS were discussed with relatives and non-staff members, and in just under half with other physicians or nurses. (15) The decision was not discussed with the patient in three out of four decisions at the end of life. (16) In general, the patient was perceived by the physician as competent. For all deaths preceded by an end-of-life decision, the time by which life was shortened was estimated by the physician as less than one day in just under a quarter of cases, with nearly 80 percent by less than a week. End-of-life decisions made without previous discussion with the patient or a previously stated wish were made in about two-thirds to three-quarters of all categories apart from euthanasia. The percentage of end-of-life decisions explicitly requested by close relatives varied. The patient's life was ended without request and by the withdrawal or withholding of treatment mainly among incompetent patients. (17) A colleague was consulted in one in four end-of-life decisions. (18) Discussion with colleagues took place more often in these cases than for patients who received opioids with a potential life shortening effect. (19)

Between 1998 and 2001, there was a substantial decrease in the number of euthanasia cases. Luc Deliens argued that physicians became much more aware of needs of patients at the end of life, and the different possibilities that were opened for treatment, including palliative care. Deliens thought physicians and nurses were receiving better training; there was "improved attitude" towards patients; more equality in the relationships between physicians and patients; better communication between physicians and patients, making the patient as comfortable as is possible. He thought that decisionmaking at the end of life was becoming more ethical. (20)

Wim Distelmans is a cancer specialist and professor of palliative medicine at Brussles Free University. He is one of the pioneers in Belgium for the recognition of palliative care and fought for the right to euthanasia. Distelmans was president of the Federation Palliative Care Flanders and currently is President of the National Evaluation and Control Commission for Euthanasia. He contributed another point of view, that the number of euthanasia cases might be temporarily reduced because of the number of physicians that had been prosecuted for "murder" (Distelmans'...