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Euthanasia in the Netherlands The Policy and Practice of Mercy Killing Raphael Cohen-Almagor.

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1 Euthanasia in the Netherlands The Policy and Practice of Mercy Killing Raphael Cohen-Almagor

2 Preliminaries: Comparative Law

3

4 Part A: Background 1. The Two Research Reports of 1990 and 1995 and Their Interpretations 1. The Two Research Reports of 1990 and 1995 and Their Interpretations 2. The Practice of Euthanasia and the Legal Framework 2. The Practice of Euthanasia and the Legal Framework

5 Part B: Fieldwork 3. The Methodology 3. The Methodology

6 Phase I: The Interviews 4. Why the Netherlands? 4. Why the Netherlands? 5. Views on the Practice of Euthanasia 5. Views on the Practice of Euthanasia

7 6. Worrisome Data “ Some of the most worrisome data in the two Dutch studies are concerned with the hastening of death without the explicit request of patients. There were 1000 cases (0.8%) without explicit and persistent request in 1990, and 900 cases (0.7%) in What is your opinion? ” “ Some of the most worrisome data in the two Dutch studies are concerned with the hastening of death without the explicit request of patients. There were 1000 cases (0.8%) without explicit and persistent request in 1990, and 900 cases (0.7%) in What is your opinion? ”

8 7. The Remmelink Contention and the British Criticism The Remmelink Commission held that actively ending life when the vital functions have started failing is indisputably normal medical practice. Is this correct? The Remmelink Commission held that actively ending life when the vital functions have started failing is indisputably normal medical practice. Is this correct? What is your opinion? What is your opinion? In its memorandum before the House of Lords, the BMA held that in regard to Holland, “ all seem to agree that the so-called rules of careful conduct (official guidelines for euthanasia) are disregarded in some cases. Breaches of rules range from the practice of involuntary euthanasia to failure to consult another practitioner before carrying out euthanasia and to certifying the cause of death as natural. ” In its memorandum before the House of Lords, the BMA held that in regard to Holland, “ all seem to agree that the so-called rules of careful conduct (official guidelines for euthanasia) are disregarded in some cases. Breaches of rules range from the practice of involuntary euthanasia to failure to consult another practitioner before carrying out euthanasia and to certifying the cause of death as natural. ” I asked my interviewees: Do you agree? I asked my interviewees: Do you agree?

9 8. Should Physicians Suggest Euthanasia to Their Patients? 8. Should Physicians Suggest Euthanasia to Their Patients?

10 9. Breaches of the Guidelines The physician practicing euthanasia is required to consult a colleague in regard to the hopeless condition of the patient. Who decides who the second doctor will be? The physician practicing euthanasia is required to consult a colleague in regard to the hopeless condition of the patient. Who decides who the second doctor will be? What happens in small rural villages where it might be difficult to find an independent colleague to consult. What happens in small rural villages where it might be difficult to find an independent colleague to consult.

11 Lack of Reporting Record-keeping and written requests of euthanasia cases have improved considerably since 1990; there are now written requests in about 60% and written record-keeping in some 85% of all cases of euthanasia. The reporting rate for euthanasia was 18% in 1990, and by 1995 it had risen to 41%. The trend is reassuring, but a situation in which less than half of all cases are reported is unacceptable from the point of view of effective control. Record-keeping and written requests of euthanasia cases have improved considerably since 1990; there are now written requests in about 60% and written record-keeping in some 85% of all cases of euthanasia. The reporting rate for euthanasia was 18% in 1990, and by 1995 it had risen to 41%. The trend is reassuring, but a situation in which less than half of all cases are reported is unacceptable from the point of view of effective control. What do you think? What do you think? How can the reporting rate be improved? How can the reporting rate be improved?

12 10. On Palliative Care and the Dutch Culture It has been argued that the policy and practice of euthanasia is the result of undeveloped palliative care. What do you think? It has been argued that the policy and practice of euthanasia is the result of undeveloped palliative care. What do you think? I also mentioned the fact that there are only a few hospices in the Netherlands. I also mentioned the fact that there are only a few hospices in the Netherlands.

13 Culture of Death Daniel Callahan argues that there is a “culture of death ” in the Netherlands. Daniel Callahan argues that there is a “culture of death ” in the Netherlands. What do you think? What do you think?

14 Culture of death I intentionally refrained from explaining the term “ culture of death. ” I wanted to see whether the interviewees have different ideas on what would constitute such a culture. I intentionally refrained from explaining the term “ culture of death. ” I wanted to see whether the interviewees have different ideas on what would constitute such a culture.

15 11. On Legislation and the Chabot Case 11. On Legislation and the Chabot Case

16 Since November 1990, prosecution is unlikely if a doctor complies with the Guidelines set out in the non-prosecution agreement between the Dutch Ministry of Justice and the Royal Dutch Medical Association. Since November 1990, prosecution is unlikely if a doctor complies with the Guidelines set out in the non-prosecution agreement between the Dutch Ministry of Justice and the Royal Dutch Medical Association. These Guidelines are based on the criteria established in court decisions relating to the conditions under which a doctor can successfully invoke the defense of necessity. These Guidelines are based on the criteria established in court decisions relating to the conditions under which a doctor can successfully invoke the defense of necessity.

17 The substantive requirements are as follows: The request for euthanasia or physician- assisted suicide must be made by the patient and must be free and voluntary. The request for euthanasia or physician- assisted suicide must be made by the patient and must be free and voluntary. The patient ’ s request must be well considered, durable and consistent. The patient ’ s request must be well considered, durable and consistent.

18 The patient ’ s situation must entail unbearable suffering with no prospect of improvement and no alternative to end the suffering. The patient ’ s situation must entail unbearable suffering with no prospect of improvement and no alternative to end the suffering. The patient need not be terminally ill to satisfy this requirement and the suffering need not necessarily be physical. The patient need not be terminally ill to satisfy this requirement and the suffering need not necessarily be physical. Euthanasia must be a last resort. Euthanasia must be a last resort.

19 The procedural requirements are as follows: No doctor is required to perform euthanasia, but those opposed on principle must make this position known to the patient early on and help the patient to get in touch with a colleague who has no such moral objections. No doctor is required to perform euthanasia, but those opposed on principle must make this position known to the patient early on and help the patient to get in touch with a colleague who has no such moral objections. Doctors taking part in euthanasia should preferably and whenever possible have patients administer the fatal drug themselves, rather than have a doctor apply an injection or intravenous drip. Doctors taking part in euthanasia should preferably and whenever possible have patients administer the fatal drug themselves, rather than have a doctor apply an injection or intravenous drip.

20 Procedural requirements A doctor must perform the euthanasia. A doctor must perform the euthanasia. Before the doctor assists the patient, the doctor must consult a second independent doctor who has no professional or family relationship with either the patient or doctor. Before the doctor assists the patient, the doctor must consult a second independent doctor who has no professional or family relationship with either the patient or doctor. Since the 1991 Chabot case, patients with a psychiatric disorder must be examined by at least two other doctors, one of whom must be a psychiatrist. Since the 1991 Chabot case, patients with a psychiatric disorder must be examined by at least two other doctors, one of whom must be a psychiatrist.

21 Procedural requirements The doctor must keep a full written record of the case. The doctor must keep a full written record of the case. The death must be reported to the prosecutorial authorities as a case of euthanasia or physician- assisted suicide and not as a case of death by natural causes. The death must be reported to the prosecutorial authorities as a case of euthanasia or physician- assisted suicide and not as a case of death by natural causes. Since the legalization of the new law, cases of euthanasia and PAS are reported to the regional committees instead of the prosecutorial authorities. Since the legalization of the new law, cases of euthanasia and PAS are reported to the regional committees instead of the prosecutorial authorities.

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

23 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.

24 Guideline 1 Initiation by the physician might undermine the trust between the patient and the physician, conveying to patients that the doctor is giving up on them and values their lives only to the extent of offering assistance to die. Such an offer might undermine the will to live and to explore further avenues for treatment. Initiation by the physician might undermine the trust between the patient and the physician, conveying to patients that the doctor is giving up on them and values their lives only to the extent of offering assistance to die. Such an offer might undermine the will to live and to explore further avenues for treatment.

25 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. 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. 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.

26 Guideline 2 We must also verify that the request is not the result of external influences. It should be ascertained with a signed document that the patient is ready to die now, rather than depending solely upon directives from the past. We must also verify that the request is not the result of external influences. It should be ascertained with a signed document that the patient is ready to die now, rather than depending solely upon directives from the past. The Oregon Act requires that the written request for medication to end one ’ s life be signed and dated by the patient and witnessed by at least two individuals who, in the presence of the patient, attest to the best of their knowledge and belief that the patient is capable, is acting voluntarily, and is not being coerced to sign the request. The Oregon Act requires that the written request for medication to end one ’ s life be signed and dated by the patient and witnessed by at least two individuals who, in the presence of the patient, attest to the best of their knowledge and belief that the patient is capable, is acting voluntarily, and is not being coerced to sign the request.

27 Guideline 2 The Belgian law holds that the declaration must be made in writing, in the presence of two adult witnesses - one of whom at least had no material interest in the death of the author of the declaration - dated and signed by the author, by the witnesses and, wherever applicable, by the designated trusted person(s). The Belgian law holds that the declaration must be made in writing, in the presence of two adult witnesses - one of whom at least had no material interest in the death of the author of the declaration - dated and signed by the author, by the witnesses and, wherever applicable, by the designated trusted person(s).

28 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.

29 Guideline 3 A psychiatrist ’ s assessment can confirm whether the patient is able to make a decision of such ultimate significance to the patient ’ s life and whether the decision is truly that of the patient, expressed consistently and of his/her own free will. A psychiatrist ’ s assessment can confirm whether the patient is able to make a decision of such ultimate significance to the patient ’ s life and whether the decision is truly that of the patient, expressed consistently and of his/her own free will. The Northern Territory Rights of Terminally Ill Act required that the patient meet with a qualified psychiatrist to confirm that the patient was not clinically depressed. The Northern Territory Rights of Terminally Ill Act required that the patient meet with a qualified psychiatrist to confirm that the patient was not clinically depressed.

30 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 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. The Belgian law and the Oregon Death with Dignity Act require this.

31 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.

32 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. 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. A specialist, who is not dependent on the first doctor, either professionally or otherwise, should provide the second opinion.

33 Guideline 6 The Oregon Death with Dignity Act requires that a consulting physician shall examine the patient and his/her relevant medical records and subsequently confirm, in writing, the attending physician ’ s diagnosis that “ the patient is suffering from a terminal disease. ” Furthermore, the consulting physician must verify that the patient is capable, is acting voluntarily, and has made an informed decision. The Oregon Death with Dignity Act requires that a consulting physician shall examine the patient and his/her relevant medical records and subsequently confirm, in writing, the attending physician ’ s diagnosis that “ the patient is suffering from a terminal disease. ” Furthermore, the consulting physician must verify that the patient is capable, is acting voluntarily, and has made an informed decision.

34 Guideline 6 The Dutch Guidelines require that the physician consult a colleague. The Dutch Guidelines require that the physician consult a colleague. The Belgian law requires that the physician consults with an independent and competent colleague. The Belgian law requires that the physician consults with an independent and competent colleague. The Northern Territory Rights of Terminally Ill Act required that a physician who specialized in treating terminal illness examine the patient. The Northern Territory Rights of Terminally Ill Act required that a physician who specialized in treating terminal illness examine the patient.

35 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.

36 Guideline 7 This is in order to avoid the possibility of arranging deals between doctors.

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. 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.

38 Guideline 8 The patient ’ s loved ones will be notified so that they can be present right until the performance of the act, making the day an intimate, family occasion. The patient ’ s loved ones will be notified so that they can be present right until the performance of the act, making the day an intimate, family occasion. This Guideline is somewhat similar to the guidelines of the Swiss EXIT protocol. This Guideline is somewhat similar to the guidelines of the Swiss EXIT protocol.

39 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.

40 Guideline 10 Physician-assisted suicide may be performed only by a doctor and in the presence of another doctor. 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. 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.

41 Guideline 10 The doctor performing the assisted suicide should be the one who knows the patient best, having been involved in the patient ’ s treatment, taken part in the consultations, and verified through the help of social workers, nurses and psychologists that euthanasia is the true wish of the patient. The doctor performing the assisted suicide should be the one who knows the patient best, having been involved in the patient ’ s treatment, taken part in the consultations, and verified through the help of social workers, nurses and psychologists that euthanasia is the true wish of the patient.

42 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.

43 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. 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.

44 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.

45 Guideline 13 This meticulous documentation is meant to prevent exploitation of any kind -- personal, medical, or institutional. Each report should be examined by a coroner following completion of the physician- assisted suicide. This meticulous documentation is meant to prevent exploitation of any kind -- personal, medical, or institutional. Each report should be examined by a coroner following completion of the physician- assisted suicide. Some of these documents are required by the Dutch, Belgian and the Oregon laws. Some of these documents are required by the Dutch, Belgian and the Oregon laws.

46 Guideline 13 Each report should be examined by a coroner following completion of the physician-assisted suicide. Each report should be examined by a coroner following completion of the physician-assisted suicide.

47 Guideline 14 Pharmacists should also be required to report all prescriptions for lethal medication, thus providing a further check on physicians ’ reporting. Pharmacists should also be required to report all prescriptions for lethal medication, thus providing a further check on physicians ’ reporting.

48 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.

49 Guideline 15 The Belgian law requires: No physician is bound to perform euthanasia. No one is bound to participate in euthanasia. If the physician who receives a request refuses to perform euthanasia, s/he must inform in due time the patient or the trusted person, and specify his/her reasons. In case his/her refusal is based on a medical consideration, this consideration must be entered into the patient's medical record.

50 Guideline 15 Belgian law further requires that the physician who refuses to act upon to a request for euthanasia must, at the wish of the patient or the trusted person, transfer the patient's medical record to the physician designated by the patient or by the trusted person.

51 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. 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.

52 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. 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. 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.

53 Guideline 17 The maximum penalty for violation of the Guidelines will be the revoking of the physician ’ s medical license. The maximum penalty for violation of the Guidelines will be the revoking of the physician ’ s medical license. In the event that this penalty proves insufficient in deterring potential abusers, there will be room to consider further penalties, including heavy fines and prison sentences. In the event that this penalty proves insufficient in deterring potential abusers, there will be room to consider further penalties, including heavy fines and prison sentences.

54 Guideline 17 In the Netherlands and Belgium special review commissions were established. In the Netherlands and Belgium special review commissions were established. All cases of euthanasia and PAS should be reported to these commissions. All cases of euthanasia and PAS should be reported to these commissions.

55 Thank you


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