Euthanasia in the Netherlands and in Belgium: Law, Practice, Pitfalls and Lessons

1. Euthanasia in the Netherlands and in Belgium: Law, Practice, Pitfalls and Lessons Raphael Cohen-Almagor

2. Preliminaries: Comparative Law

3. Preliminaries: Comparative Law

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.

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.

6. Dutch Euthanasia Law • On November 28, 2000, the Dutch Lower House of parliament, by a vote of 104 for and 40 against, 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. • A year later, in April 2002, the legalization process was completed when the law was approved by the Dutch Senate.

7. 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.

8. The NetherlandsBackground • National and International criticism. • The Research Reports of 1990, 1995, 2003, 2007 and 2009 • Contrasting Interpretations • The Practice of Euthanasia and the Legal Framework

9. The Netherlands – Worrisome Data • In 2005, 0.4% of all deaths were the result of the use of lethal drugs not at the explicit request of the patient. • This percentage was not significantly different from those in previous years. • There were 1000 cases (0.8%) without explicit and persistent request in 1990, and 900 cases (0.7%) in 1995.

10. The Netherlands - Worrisome Data • In 2005, when life was ended without the explicit request of the patient, there had been discussion about the act or a previous wish of the patient for the act in 60.0% of patients, as compared with 26.5% in 2001. • In 2005, the ending of life was not discussed with patients because they were unconscious (10.4%) or incompetent owing to young age (14.4%) or because of other factors (15.3%). • Of all cases of the ending of life in 2005 without an explicit request by the patient, 80.9% had been discussed with relatives.

11. 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.

12. 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 in the Netherlands there is a tradition of doctors administering lethal drugs. • In addition, there is also 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.

13. The need for law • In both countries, 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.

14. Openness • As a result of the law, in both countries 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”.

15. The Netherlands - Data • In both 2005 and 2001, the highest rates of euthanasia or assisted suicide were found for patients aged 64 years or younger, for men, and for patients with cancer. • Furthermore, most acts of euthanasia or assisted suicide were carried out by general practitioners.* * Agnes van der Heide, Bregje D. Onwuteaka-Philipsen et al., “End of Life Practices in the Netherlands under the Euthanasia Act”, New Eng. J. of Med., Vol. 356, No. 19 (May 10, 2007): 1957-1965.

16. 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.

17. 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.

18. 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.

19. Palliative Care • Until 2000, palliative care was under-developed in both countries. • Palliation seemed to be opposed to euthanasia. • Both countries preferred to develop the practice of euthanasia.

20. 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 spoke of palliation with disdain: Why should I consult a palliative care specialist? • Since 2000, both governments dedicate more funding to palliation.

21. 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.

22. Role of Physicians • In both countries, 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.

23. Role of Physicians • In both countries, 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.

24. Reporting • In the Netherlands, all euthanasia cases need to be reported to a regional committee. • 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. • Work is similar: The Committees/Commission need to study the registered and duly completed euthanasia document received from the physician. They ascertain whether euthanasia was performed in conformity with the conditions and procedures listed in law.

25. Reporting • While in the Netherlands there are five regional committees, in Belgium there is one commission. • In the Netherlands, the names of the reviewed physicians are known to the regional committees. Members of the committees are able to summon doctors for inquiries if they feel that something in the decision-making process was flawed. • 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 they should see also the discrete part. • The Dutch system is arguably better because there is more feedback between the regional committees and physicians. • In Belgium the commission has more limited information.

26. Dutch Reporting • The reporting rate for euthanasia was 18% in 1990. • By 1995 it had risen to 41%. • In 2001, the level of reporting rose to 54%. • After the legislation, 80% reported in 2005.

27. Dutch Reporting • Official notifications increased sharply in 2009, from 2,331 in 2008 to 2,636 - a rise of 13%. • Since 2006 number of euthanasia cases has been increasing steadily, by about 10% a year. • Different interpretations.

28. Belgium - 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).

29. Palliative Sedation • One of the worrisome consequences of the Dutch law is increase in the number of patients receiving palliative sedation. • Palliative sedation involves the administration of deep sleep-inducing medication to patients who have at most two weeks to live. • There was a substantive increase in the use of palliative sedation after the introduction of the law from 8,500 to 9,600.* • * Agnes van der Heide, Bregje D. Onwuteaka-Philipsen et al., “End of Life Practices in the Netherlands under the Euthanasia Act”, New Eng. J. of Med., Vol. 356, No. 19 (May 10, 2007): 1957-1965.

30. 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.

31. 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.

32. Consultation • In both countries, 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. • In the Netherlands, the independency requirement has been compromised. • Death on Request (Dr. van Oijen). • Up until 1992, in only 5% of the cases did the family doctor seek a second opinion from a doctor whom he did not know personally.* *. G. van der Wal, J.Th.M. van Eijk, H.J.J. Leenen and C. Spreeuwenberg, “Euthanasia and Assisted Suicide. II. Do Dutch Family Doctors Act Prudently?”, Family Practice, Vol. 9, No. 2 (1992), pp. 113, 115.

33. Consultation • Another study showed, unsurprisingly, that almost all consultants regarded the request of the patient to be well-considered and persistent, conceded that there were no further alternative treatment options, and agreed with the intention to perform euthanasia or assisted suicide. • In general, the GPs did not need to change their views or plans following the consultation.* • My own study (1999) showed that the consultants often were not independent from the physician who was asking for their opinion. *. Bregje Dorien Onwuteaka-Philipsen, Consultation of Another Physician in Cases of Euthanasia and Physician-assisted Suicide (Amsterdam: Vrije Universiteit, 1999), Thesis, pp. 29, 31.

34. Consultation • Since 2000, SCEN in the Netherlands. • 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.

35. 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.

36. Newborns • In both countries, 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.* • Dutch doctors have reported 22 cases of euthanasia of severely ill babies between 1997 and 2005. * 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.

37. Newborns • The Groningen Protocol Guidelines say euthanasia is acceptable when: • the child's medical team and independent doctors agree the pain cannot be eased, • there is no prospect for improvement, and • when parents think it's best.

38. 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.

39. Suggestions for Improvement Physician-assisted suicide, not euthanasia, to ensure better control that at least in the Netherlands is lacking.

40. 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.

41. 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.

42. 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.

43. 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 OregonDeath with Dignity Actrequire this.

44. 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.

45. 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.

46. 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.

47. 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.

48. Guideline 9 • The patient can rescind at any time and in any manner. • This provision was granted under the abolished Australian Northern Territory Actand under theOregonDeath with Dignity Act. • The Belgian Euthanasia Law holds that patients can withdraw or adjust their euthanasia declaration at any time.

49. 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.

50. 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.