1. Euthanasia in Belgium: Law, Practice, Pitfalls and Lessons Raphael Cohen-Almagor June 28, 2015June 28, 2015June 28, 20151

2. Preliminaries: Comparative Law 2 June 28, 2015June 28, 2015June 28, 2015

3. Preliminaries: Comparative Law 3 June 28, 2015June 28, 2015June 28, 2015

4. Methodology Critical review of the literature Interviews with leading scholars and practitioners The interviews were conducted in English, usually in the interviewees’ offices. The interviews were semi-structured. I began with a list of questions 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 1 hour to 2.5. hours. After completing the first draft I sent the papers to my interviewees. June 28, 2015June 28, 2015June 28, 20154

5. Euthanasia - Definition Belgium accepted the Dutch definition: (a) “euthanasia is the intentional taking of someone’s life by another, on her 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 is recommended to give up the expression “passive euthanasia” in these cases. (d) What was sometimes called “indirect euthanasia”, forcing up the use of analgesics with a possible effect of shortening life, is also clearly distinguished from euthanasia proper. June 28, 2015June 28, 2015June 28, 20155

6. Belgian Euthanasia Law On January 20, 2001 the euthanasia commission of Belgium’s upper house, the Senate, voted in favour of proposed euthanasia legislation, which would make euthanasia no longer punishable by law, provided certain requirements are met. Nine months later, on October 25, 2001 Belgium’s Senate approved the law proposal, which was adopted on March 20, 2001 by the joint commissions of Justice and Social Affairs, by a significant majority. On May 16, 2002, after two days of heated debate, the lower house of the Belgian parliament endorsed the bill by 86 votes in favour, 51 against and with 10 abstentions. June 28, 2015June 28, 2015June 28, 20156

7. Belgium - Worrisome Data Prior the law, studies have shown that more than one in 10 deaths among the country’s 10 million people are the result of "informal" euthanasia, where doctors gave patients drugs to hasten their deaths. 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. June 28, 2015June 28, 2015June 28, 20157

8. Euthanasia v. PAS One way to address this issue of abuse is to advance physician-assisted suicide for all patients who are able to swallow oral medication. However, in Belgium and also in the Netherlands there is a tradition of doctors administering lethal drugs. In addition, there is the issue of taking responsibility. Physicians in both countries like to have control over the process. Consequently, in Belgium and the Netherlands there are relatively few cases of PAS. I suggest putting this issue on public agenda, speaking openly as people in Belgium like and appreciate about the findings and the fear of abuse, and suggest PAS as an alternative to euthanasia. June 28, 2015June 28, 2015June 28, 20158

9. The need for law In Belgium, there was/is strong support for euthanasia. The legal and social situation created confusion: Legally euthanasia was illegal; in practice it was conducted by many physicians. This is unhealthy situation. Law was needed to clarify the situation. June 28, 2015June 28, 2015June 28, 20159

10. Openness As a result of the law, in both Belgium and Holland physicians speak openly about terminating life of dying competent patients. Dutch and Belgian experts believe that while in the world “physicians have probably the same practice but it is conducted behind close doors, we believe it is better to discuss things, in order to have exchange of ideas and expertise”. June 28, 2015June 28, 2015June 28, 201510

11. Belgium - Data In September 2004, the first major study into the effect of Belgium's new legislation that permits euthanasia had found that around 20 terminally ill people a month asked doctors to help them to die. The study found that 259 acts of legal euthanasia were carried out in Belgium up until the end of 2003. The Federal Control and Evaluation Commission for Euthanasia counted an average of 17 registered cases of euthanasia per month. About 60 per cent of euthanasia cases were administered in hospitals; the rest generally took place at the patients’ homes. June 28, 2015June 28, 2015June 28, 201511

12. Belgium - Data The vast majority of people asking to be euthanized were suffering from terminal cancers. Euthanasia was more reported in Dutch speaking Flanders than in Francophone Wallonia. June 28, 2015June 28, 2015June 28, 201512

13. Belgium - Data In December 2006 the Federal National Evaluation and Control Commission for Euthanasia issued its second report, covering the period 2004-2005. Its findings echo much of the results of the first report. This report deals with 742 legal euthanasia cases, 31 per month, a significant increase compared with the 2002-2003 figures. 83% of cases involved cancer patients. 45% of cases were dealt with by the General Practitioner (GP) at the patient’s home. Only 14 percent of all euthanasia requests were written in French. 86% of the declarations were written in Flemish. June 28, 2015June 28, 2015June 28, 201513

14. Palliative Care Until 2000, palliative care was under- developed in both Belgium and Holland. Palliation seemed to be opposed to euthanasia. Both countries preferred to develop the practice of euthanasia. June 28, 2015June 28, 2015June 28, 201514

15. Palliative Care Almost all the physicians I interviewed in both countries had no palliative care training. Most did not think they need such training. One head of department in Brussels spoke of palliation with disdain: Why should I consult a palliative care specialist? Since 2000, both Belgian and Dutch governments dedicate more funding to palliation. June 28, 2015June 28, 2015June 28, 201515

16. Palliative Care Most worrisome is to know that sometime when physicians administered life-shortening drugs in order to alleviate pain, they did not consult palliative care specialist or any other health care personnel.* Ganzini and colleagues reported that as a result of palliative care, some patients in Oregon changed their minds about assisted suicide.** * Veerle Provoost, Filip Cools, Johan Bilsen et al., “The Use of Drugs with a Life- shortening Effect in End-of-life Care in Neonates and Infants”, Intensive Care Med., Vol. 32 (2006), p. 136. ** Linda Ganzini, Heidi D. Nelson, Terri A. Schmidt, Dale F. Kraemer, Molly A. Delorit, Melinda A. Lee, “Physicians’ Experiences with the Oregon Death with Dignity Act”, New Eng. J. of Med., Vol. 342, No. 8 (Feb. 24, 2000), p. 563. June 28, 2015June 28, 2015June 28, 201516

17. Role of Physicians In both Belgium and Holland, physicians are not obliged to carry out euthanasia if this practice contradicts their conscience. However, they are under tremendous amount of pressure to do it. They should tell their patients their reluctance so as patients should know beforehand that they cannot expect this service from them. They constitute a small minority. They cannot serve on most prestigious committees because euthanasia is on the menu of available medical practices. June 28, 2015June 28, 2015June 28, 201517

18. Role of Physicians In both Belgium and Holland, the physician is required to devote energies in the patient and her loved ones, to consult with other specialists, to spend time and better the communication between all people concerned. June 28, 2015June 28, 2015June 28, 201518

19. Reporting In Belgium, all cases have to be fully documented in a special format and presented to a permanent monitoring committee, the National Evaluation and Control Commission for Euthanasia, established by the government in September 2002. The Commission needs to study the registered and duly completed euthanasia document received from the physician. Members ascertain whether euthanasia was performed in conformity with the conditions and procedures listed in law. June 28, 2015June 28, 2015June 28, 201519

20. Reporting In Belgium, the names of the physicians remain anonymous. The Commission as a general rule sees only the open part of the physicians’ reports. Only when there are doubts about the practice, the Commission may decide to vote whether or not members should see also the discrete part. The Commission has limited information. June 28, 2015June 28, 2015June 28, 201520

21. Reporting According to the last report (2010) approximately half (549/1040 (52.8%) of all estimated cases of euthanasia were reported to the Federal Control and Evaluation Committee. Timme Smets, Johan Bilsen, Joachim Cohen et al., “Reporting of Euthanasia in Medical Practice in Flanders, Belgium: cross sectional analysis of reported and unreported cases”, BMJ, Vol. 341 (October 5, 2010). June 28, 2015June 28, 2015June 28, 201521

22. Palliative Sedation Terminal sedation is not euthanasia, or as some people in Belgium and the Netherlands term “slow euthanasia”. Euthanasia requires the consent of the patient, while terminal sedation does not by definition requires consent. The fear of abuse is great. Experts told me that terminal sedation happens frequently in ICUs. Physicians conceive the practice as the middle approach between euthanasia and withholding treatment. It is estimated that 8% of all death cases in Belgium in 2001 were cases of terminal sedation, about 4,500 cases in Flanders alone.* * Johan Bilsen, Robert Vander Stichele, Bert Broeckaert et al., “Changes in Medical End-of-Life Practices during the Legalization Process of Euthanasia in Belgium”, Social Science and Medicine, Vol. 65, Issue 4 (2007): 803-808. June 28, 2015June 28, 2015June 28, 201522

23. Palliative Sedation There is no knowledge whether the patient's consent was sought or given. At present the Dutch and Belgian physicians do not have clear directives on this. There is no legal regulation, no public or professional scrutiny to examine to what extent the procedure is careful, and there is no knowledge whether consultation was provided This situation calls for a change. There should be clear guidelines when it is appropriate, if at all, to resort to this practice. June 28, 2015June 28, 2015June 28, 201523

24. Consultation In both Belgium and Holland, the physician practicing euthanasia is required to consult an independent colleague in regard to (a) the hopeless condition of the patient, and (b) the voluntariness of the request. Unclear to what an extent the independency requirement has been compromised. June 28, 2015June 28, 2015June 28, 201524

25. Consultation Since 2003, LEIFartsen in Belgium. In Belgium, there are no rules regarding who decides the identity of the consultant. The only rule is that the consultant needs to be independent. Probably doctors approach like-minded physicians. Unclear what happens if there is disagreement between doctors. This issue deserves attention and probing. June 28, 2015June 28, 2015June 28, 201525

26. Consultation In the Netherlands, sometimes consultancy was conducted over the phone, with only the GP. Mixed views whether this is happening today in both countries. June 28, 2015June 28, 2015June 28, 201526

27. Newborns In both Belgium and the Netherlands, administering lethal drugs to minors is against the law. Comparison between end of life decision making in Belgium and in the Netherlands shows that the practice regarding severely ill neonates and infants is rather similar. Parents and colleague physicians are more often involved in the decision making in the Netherlands.* * Astrid M. Vrakking, Agnes van der Heide, Veerle Provoost et al., “End-of-life Decision Making in Neonates and Infants: Comparison of the Netherlands and Belgium (Flanders)”, Acta Paediatrica, Vol. 96 (2007): 820-824. June 28, 2015June 28, 2015June 28, 201527

28. Newborns A 2005 survey of Flanders doctors revealed three in four were willing to shorten the life of critically ill babies. In 17 deaths high doses of painkillers were explicitly administered to end the newborn's life. Of 121 doctors questioned, 79% thought it was their “professional duty”, if necessary, to prevent unnecessary suffering by hastening death. The vast majority (88%) also accepted quality-of-life ethics. 58% supported the legal termination of life in some cases. In most cases (84 percent) of the cases the decision was made in consultation with the parents. Still, in 22 deaths parents were not consulted.* * Veerle Provoost, Filip Cools, Freddy Mortier et al., “Medical End-of-Life Decisions in Neonates and Infants in Flanders”, The Lancet, Vol. 365 (April 9, 2005): 1315-1316. June 28, 2015June 28, 2015June 28, 201528

29. June 28, 2015June 28, 2015June 28, 201529 Suggestions for Improvement Physician-assisted suicide, not euthanasia, to ensure better control. Physician-assisted suicide, not euthanasia, to ensure better control.

30. June 28, 2015June 28, 2015June 28, 201530 Guideline 1  The physician should not suggest assisted suicide to the patient. Instead, it is the patient who should have the option to ask for such assistance.

31. Guideline 2 The request for physician-assisted suicide of an adult, competent patient who suffers from an intractable, incurable and irreversible disease must be voluntary. The decision is that of the patient who asks to die without pressure, because life appears to be the worst alternative in the current situation. The patient should state this wish repeatedly over a period of time. These requirements appear in the abolished Northern Territory law in Australia, the Oregon Death with Dignity Act, as well as in the Dutch and Belgian Guidelines. June 28, 2015June 28, 2015June 28, 201531

32. June 28, 201532 Guideline 3 At times, the patient’s decision might be influenced by severe pain. The role of palliative care can be crucial. The Belgian law as well as the Oregon Death with Dignity Act require the attending physician to inform the patient of all feasible alternatives, including comfort care, hospice care and pain control.

33. Guideline 4 The patient must be informed of the situation and the prognosis for recovery or escalation of the disease, with the suffering that it may involve. There must be an exchange of information between doctors and patients. The Belgian law and the Oregon Death with Dignity Act require this. June 28, 2015June 28, 2015June 28, 201533

34. Guideline 5  It must be ensured that the patient’s decision is not a result of familial and environmental pressures.  It is the task of social workers to examine patients’ motives and to see to what extent they are affected by various external pressures. June 28, 2015June 28, 2015June 28, 201534

35. Guideline 6 The decision-making process should include a second opinion in order to verify the diagnosis and minimize the chances of misdiagnosis, as well as to allow the discovery of other medical options. A specialist, who is not dependent on the first doctor, either professionally or otherwise, should provide the second opinion. June 28, 2015June 28, 2015June 28, 201535

36. June 28, 2015June 28, 2015June 28, 201536 Guideline 7 It is advisable for the identity of the consultant to be determined by a small committee of specialists (like the Dutch SCEN), who will review the requests for physician-assisted suicide.

37. Guideline 8 Some time prior to the performance of physician- assisted suicide, a doctor and a psychiatrist are required to visit and examine the patient so as to verify that this is the genuine wish of a person of sound mind who is not being coerced or influenced by a third party. The conversation between the doctors and the patient should be held without the presence of family members in the room in order to avoid familial pressure. A date for the procedure is then agreed upon. June 28, 2015June 28, 2015June 28, 201537

38. 38June 28, 2015June 28, 2015June 28, 2015 Guideline 9 The patient can rescind at any time and in any manner. This provision was granted under the abolished Australian Northern Territory Act and under the Oregon Death with Dignity Act. The Belgian Euthanasia Law holds that patients can withdraw or adjust their euthanasia declaration at any time.

39. Guideline 10 Physician-assisted suicide may be performed only by a doctor and in the presence of another doctor. The decision-making team should include at least two doctors and a lawyer, who will examine the legal aspects involved. Insisting on this protocol would serve as a safety valve against possible abuse. Perhaps a public representative should also be present during the entire procedure, including the decision-making process and the performance of the act. June 28, 2015June 28, 2015June 28, 201539

40. Guideline 11  Physician-assisted suicide may be conducted in one of three ways, all of them discussed openly and decided upon by the physician and the patient together: (1) oral medication; (2) self- administered, lethal intravenous infusion; (3) self-administered lethal injection.  Oral medication may be difficult or impossible for many patients to ingest because of nausea or other side effects of their illnesses. In the event that oral medication is provided and the dying process is lingering on for long hours, the physician is allowed to administer a lethal injection. June 28, 2015June 28, 2015June 28, 201540

41. Guideline 12 Doctors may not demand a special fee for the performance of assisted suicide. The motive for physician-assisted suicide is humane, so there must be no financial incentive and no special payment that might cause commercialization and promotion of such procedures. June 28, 2015June 28, 2015June 28, 201541

42. June 28, 2015June 28, 2015June 28, 201542 Guideline 13 There must be extensive documentation in the patient’s medical file, including the following: diagnosis and prognosis of the disease by the attending and the consulting physicians; attempted treatments; the patient’s reasons for seeking physician-assisted suicide; the patient’s request in writing or documented on a video recording; documentation of conversations with the patient; the physician’s offer to the patient to rescind his or her request; documentation of discussions with the patient’s loved ones; and a psychological report confirming the patient’s condition. There must be extensive documentation in the patient’s medical file, including the following: diagnosis and prognosis of the disease by the attending and the consulting physicians; attempted treatments; the patient’s reasons for seeking physician-assisted suicide; the patient’s request in writing or documented on a video recording; documentation of conversations with the patient; the physician’s offer to the patient to rescind his or her request; documentation of discussions with the patient’s loved ones; and a psychological report confirming the patient’s condition.

43. Guideline 14 Pharmacists should also be required to report all prescriptions for lethal medication, thus providing a further check on physicians’ reporting. This is not the case now in both Belgium and Holland. 43 June 28, 2015June 28, 2015June 28, 2015

44. 44 Guideline 15 Doctors must not be coerced into taking actions that contradict their conscience or their understanding of their role. This was provided under the Northern Territory Act.

45. Guideline 16 The local medical association should establish a committee, whose role will be not only to investigate the underlying facts that were reported but also to investigate whether there are “mercy” cases that were not reported and/or that did not comply with the Guidelines. June 28, 2015June 28, 2015June 28, 201545

46. Guideline 17 Licensing sanctions will be taken to punish those health care professionals who violated the Guidelines, failed to consult or to file reports, engaged in involuntary euthanasia without the patient’s consent or with patients lacking proper decision-making capacity. Physicians who failed to comply with the above Guidelines will be charged and procedures to sanction them will be brought by the Disciplinary Tribunal of the Medical Association. Sanctions should be significant. June 28, 2015June 28, 2015June 28, 201546

47. Thank you June 28, 2015June 28, 2015June 28, 201547