Non-voluntary and involuntary euthanasia in the Netherlands: Dutch perspectives.

• Author: Cohen-Almagor, Raphael

Abstract: During the summer of 1999, twenty-eight interviews with some of the leading authorities on euthanasia policy were conducted in the Netherlands. They were asked about cases of non-voluntary (when patients are incompetent) and involuntary euthanasia (when patients are competent and made no request to die). This study reports the main findings, showing that most respondents are quite complacent with regard to breaches of the guideline that require the patient's consent as a prerequisite to performance of euthanasia.

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In November 1990, the Dutch Ministry of Justice and the Royal Dutch Medical Association set out Guidelines for the performance of euthanasia based on the criteria established in court decisions relating to the conditions under which a doctor can successfully invoke the defense of necessity. The substantive requirements are as follows:

1. The request for euthanasia or physician-assisted suicide must be made by the patient and must be free and voluntary

2. The patient's request must be well considered, durable and consistent.

   The patient's situation must entail unbearable suffering with no prospect of improvement and no alternative to end the suffering. (1) The patient need not be terminally ill to satisfy this requirement and the suffering need not necessarily be physical.

3. Euthanasia must be a last resort. (2)

   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.

   * 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. (3)

   * 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. Since the 1991 Chabot case, (4) patients with a psychiatric disorder must be examined by at least two other doctors, one of whom must be a psychiatrist.

   * 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. (5)

   In 1990, the Dutch government appointed a commission to investigate the medical practice of euthanasia. The Commission, headed by Professor Jan Remmelink, Solicitor General to the Supreme Court, was asked to conduct a comprehensive nation-wide study of "medical decisions concerning the end of life (MDEL)." The following broad forms of MDEL were studied:

   * Non-treatment decisions: withholding or withdrawing treatment in situations where treatment would probably have prolonged life;

   * Alleviation of pain and symptoms: administering opioids in such dosages that the patient's life could be shortened;

   * Euthanasia and related MDEL: the prescription, supply or administration of drugs with the explicit intention of shortening life, including euthanasia at the patient's request, assisted suicide, and life termination without explicit and persistent request. (6)

   The study was repeated in 1995, making it possible to assess for the first time whether there were harmful effects over time that might have been caused by the availability of voluntary euthanasia in the Netherlands. It is still difficult to make valid comparisons with other countries because of legal and cultural differences, and also because similar comprehensive studies are quite rare. (7)

   The two Dutch studies were said to give the best estimate of all forms of MDEL (i.e., all treatment decisions with the possibility of shortening life) in the Netherlands as approximately 39% of all deaths in 1990, and 43% in 1995. In the third category of MDEL, the studies gave the best estimate of voluntary euthanasia as 2300 persons each year (1.9% of all deaths) in 1990, (8) and 3250 persons each year (2.4%) in 1995. The estimate for physician-assisted suicide was about 0.3% in 1990 and in 1995. There were 8900 explicit requests for euthanasia or assisted suicide in the Netherlands in 1990, and 9700 in 1995. Less than 40% were actually undertaken. The most worrisome data is related to the hastening of death without the explicit request of patients. There were one thousand cases (0.8%) without explicit and persistent request in 1990, and nine hundred such cases (0.7%) in 1995. (9)

   In 1990, 30% of the general practitioners (GPs) interviewed said that they had performed a life-terminating act at some time without explicit request (as compared with 25% of specialists and 10% of nursing home physicians). (10) Life-terminating acts without explicit request were performed with older patients more, on the average, than were euthanasia or physician-assisted suicide. (11) There were still treatment alternatives in 8% of cases in which a life-terminating act was performed without explicit request of the patient. The physician did not use these alternatives when the patient indicated a desire to stop treatment because it "only would prolong suffering," or because the expected gain was not enough to make the treatment worthwhile. (12) It should be noted that the level of consultation was significantly lower in life-termination acts without patient's explicit request than in cases of euthanasia or physician-assisted suicide. A colleague was consulted in 48% of the cases (as compared with 84% in euthanasia and assisted suicide cases). Relatives were consulted in 72% of the cases (as compared with 94% in euthanasia and assisted suicide cases). In 68% of the cases, the physician felt no need for consultation because the situation was clear. (13) Van der Maas and colleagues note that this should be considered in light of the very brief period by which life was shortened. (14) In 67% of the cases, life was shortened by fewer than twenty-four hours. In 21% of the cases, life was shortened by up to one week. (15)

   About a quarter of the one thousand patients had earlier expressed a wish for voluntary euthanasia. (16) The patient was no longer competent in almost all of those cases, and death was hastened by a few hours or days. A small number of cases (approximately fifteen) involved babies who were suffering from a serious congenital disorder and were barely viable; hence the doctor's decision, in consultation with the parents, to hasten the end of life. (17)

   The Remmelink Commission regarded these cases of involuntary termination of life as "providing assistance to the dying." They were justified because the patients' suffering was unbearable, standard medical practice failed to help and, in any event, death would have occurred within a week. (18)

   The aim of this study is to explore how leading figures in the Dutch euthanasia policy and practice conceive this worrisome data. To that end, in the summer of 1999 I went to the Netherlands to visit the major centers of medical ethics as well as some research hospitals, and to speak with policymakers.

   Methodology

   Before arriving in the Netherlands, I wrote to some distinguished experts in their respective fields: medicine, psychiatry, philosophy, law, social sciences and ethics, asking to meet with them in order to discuss the Dutch policy and practice of euthanasia. Only one, Dr. Chabot, explicitly declined my request for an interview. (19)

   The interviews took place during July-August 1999, in the Netherlands. They lasted between one to three hours each. Most interviews went on for more than two hours during which I asked more or less the same series of questions. During the interviews, I took extensive notes that together comprise some two hundred dense pages. Later the interviews were typed and analyzed. (20)

   The interviews were conducted in English, usually in the interviewees' offices. Four interviews were conducted at the interviewees' private homes, and four interviews in "neutral" locations: coffee shops and restaurants. Two interviews were conducted at the office kindly made available to me at the Department of Medical Ethics, Free University of Amsterdam. To have a sample of different locations I traveled from Groningen in the north to Maastricht in the south, making extensive use of the Dutch efficient train system.

   The interviews were semi-structured. I began with a list of fifteen questions but did not insist on all of them when I saw that the interviewee preferred to speak about subjects that were not included in the original questionnaire. With a few interviewees I spoke only about their direct involvement in the practice of euthanasia. Because I was interested in the problematic aspects of the euthanasia practice, after some general questions I addressed the troublesome aspects reiterated in the Remmelink report. This line of questions disturbed some of the interviewees, who wanted to know my own opinion on the subject matter before continuing to answer my questions. Others seemed eager to bring the interview to a close.

   The Interviewees' Responses

   Hastening of Death without the Patients' Explicit Request

   The question that opened the critical line of the interviews was: "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 one thousand cases (0.8%) without explicit and persistent request in 1990, and nine hundred cases (0.7%) in 1995. What is your opinion?"

   Most of the interviewees had similar interpretations of this finding. They said that this group includes cancer patients, PVS patients, newborns with severe health problems, and patients who are suffering that would die within a matter of days or even hours. By so doing, physicians strive to alleviate the pain of very sick patients at the end of their lives. In essence, what they are saying is...