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On regulating death.

In January 1989 the Hastings Centers Reports Special Supplement on euthanasia carried an article by Dr. Richard Fenigsen, a Dutch cardiologist, that was scathingly critical of the law and practice of euthanasia in the Netherlands. Fenigsen alleged there was ample evidence of the practice of euthanasia without consent and that it was both "widely accepted" and "openly supported." He concluded: "Those who contends that it is possible to accept and practice |voluntary' euthanasia and not allow involuntary totally disregard the Dutch reality."

By contrast, in a following article the director of the Dutch Health Council, Henk Rigter, sought to defend the Dutch euthanasia experience. He maintained that euthanasia was regulated by "strict" guidelines which had been "precisely defined" by the courts and elaborated upon by the Royal Dutch Medical Association (KNMG) and that there was simply no evidence of the practice of involuntary euthanasia. Moreover, in a letter to the Report's editors the following November, a number of Holland's leading experts in medicine, law, and ethics asserted that Rigter's assessment was correct, berated Fenigsen's paper as "completely misplaced," and deplored its publication.

What, then, is the reality of the Dutch experience of euthanasia? Carlos F. Gomez's Regulating Death: Euthanasia and the Case of the Netherlands should help to provide a reliable answer.(1) The book presents the results of his substantial study, involving empirical research in the Netherlands. This article examines Regulating Death and attempts to determine the extent to which it provides an accurate assessment of the situation in the Netherlands.

Gomez's Critique

Eschewing the wider philosophical debate generated by euthanasia, Gomez, an American doctor, addresses the narrower issue of how permissible euthanasia would operate in practice and how it would be controlled. "How," he asks, "will we assure ourselves that the weak, the demented, the vulnerable, the stigmatized - those incapable of consent or dissent - [will] not become the unwilling subjects of such a practice? (p.xiv). He notes that although the Netherlands is often cited as a model of how euthanasia can safely be permitted, there is a dearth or research into the Dutch system and thee efficacy of its regulatory mechanisms. Seeking to remedy this deficiency, he aims "to describe and assess the practice of euthanasia in the Netherlands" and, more specifically, to consider "how the Dutch courts, legislature and professional medical organizations have responded to the need to control a practice that even its most ardent supporters concede carriers many dangers" (p.xv).

The first chapter addresses the tension between accommodating a patient's desire for euthanasia and protecting thee vulnerable. Private acts, he stresses, can have public consequences; private acts involving public institutions, such as the medical profession and the institutions in which it works, necessarily have public limits. He argues that a private claim on a public good needs a fuller justification than is contained in a simple expression of preference. "At the very least," he maintains, "we have to demonstrate that our claim does not interfere with the equally valid claims of others on the good or, alternatively, that by meeting our private claim, a public institution does not diminish or damage its ability to serve the broader needs of others" (p.10). The extent to which the Dutch have formulated a public policy that permits euthanasia while protecting both the interests of patients as a whole and thee bond of trust between doctor and patient is the subject of the following chapters.

Chapter two traces thee gradual development by the courts of the criteria for permissible euthanasia, beginning with the decision of a district in 1973 and calculating in a decision of the Supreme Court in 1984 in the Alkmaar case. Gomez points out that while the courts have held it an offense contrary to Article 293 of the Penal Code to kill a person at his request, a doctor charged under this article can successfully plead the defense of necessity (overmacht), contained in Article 40.

In the Alkmaar case, the defendant doctor was charged with killing a ninety-five-year-old patient in deteriorating health who had requested euthanasia on several occasions. The doctor, having discussed her wishes with his assistant and with her son, both of whom agreed that her request should be granted, decided that her suffering was unbearable and killed her. The Supreme Court held that the decisive criterion was whether the doctor's action would "from an objective medical perspective, be regarded as an action justified in a situation of necessity (beyond one's control)" (pp. 36-37). Similarly, the court of appeal at The Hague, to which the Supreme Court referred the case for reconsideration on the facts, held that the central question was whether the doctor had acted in accordance with "reasonable" medical opinion.

In arriving at its decision to acquit the doctor, the court of appeal took into account the opinion of the KNMG as to permissibility of euthanasia. The medical association agreed with the Supreme Court that euthanasia was justified in cases of necessity, which it said, existed when the doctor and patient stood with their "backs to the wall," when they no longer saw any possibility of making the patient's suffering bearable and when the doctor was faced with a "conflict of duties" between savings life and responding to the patient's request for death (pp. 37-38).

In view of the KNMG's involvement with the court in developing the necessity defense in relation to euthanasia, it comes as no surprise that there is a close correspondence between the criteria for lawful euthanasia as developed by the courts and the guidelines for euthanasia issued by the KNMG. The association produced guidelines in a report in 1984 and also in a subsequent document - "Guidelines for Euthanasia" - drawn up in collaboration with the National Association of Nurses. The report lists five criteria for permissible euthanasia: "(1) voluntariness on the patient's part; (2) a well-considered request; (3) stability of desire; (4) unacceptable suffering; and (5) collegial consultation."

Gomez notes that the legal and medical guidelines imply that permissible euthanasia is confined to exceptional cases, when doctor and patient have their "backs to the wall." Is it, then, only rarely performed? He points out that there is a shortage of empirical research into this question but that even defenders of euthanasia such as Rigter have produced estimates of 5,000 to 10,000 cases per year. In his quest for an accurate understanding of the actual practice of euthanasia and, in particular, how closely it conforms to the legal and professional criteria, Gomez returns from the inconclusive quantitative data and proceeds in chapter three to give an account of the more qualitative approach he adopted in his research. He describes how, in January 1989, he carried out structured interviews in the Netherlands with nine separate sources of information: one terminal care team, five physicians, one nurse, a relative of a euthanized patient, and a bioethicist consulted in euthanasia cases. Using a set of ten criteria vetted by leading Dutch experts to ensure that they accurately reflected the consensus on permissible euthanasia, Gomez asked the interviewees to describe three cases of euthanasia in which they had been involved during the previous five years; the chapter proceeds to detail the twenty-six cases they described.

The penultimate chapter is an evaluation of these cases. Gomez observes: "It seems clear, from speaking with several officials and professionals, and from the clinical histories I document, that the guidelines put forth are being variously interpreted, and in some cases, they are ignored altogether" (pp. 96-97). The cases, he adds, disclosed an expansive interpretation of "unbearable suffering" and "last resort" and revealed both how thee determination of voluntariness was left to the doctors and how standards for making this determination varied considerably. Moreover, although the doctors ought to have made the case available for investigation by the prosecutor, in fewer that the percent of cases was thee prosecutor notified. Gomez concludes that "the formal, juridical level" of the regulatory scheme is "routinely bypassed"; that the informal regulatory guidelines are both unenforced and, in view of their ambiguity, probably unenforceable; and that the Dutch regulation of euthanasia suggests a greater concern with the exercise of private discretion than with public control. The fact, he continues, that the role of participant and regulator has fallen largely to the medical profession betrays not only a remarkable degree of trust in the medical profession but also an "almost cavalier attitude toward those - however many or few their numbers - who cannot challenge a decision to have euthanasia performed upon them." To the extent, he maintains, that public policy fails to protect such people, it fails altogether.

In his final chapter, Gomez underlines his criticism of Dutch public policy for creating a "private place" for euthanasia which is both spacious and poorly policed. He explains that the formal, judicial system of regulation is frustrated, first, by the widespread failure of doctors to notify the authorities and, second, even when the authorities have been notified, by the reluctance of prosecutors to prosecute and of courts to convict - a reluctance which, he remarks, is understandable, given that it is the doctor who decides what facts to report and that he is hardly likely to include anything incriminatory. The informal regulatory mechanisms are also criticized as "less than reassuring." As for consultation, for example, he notes that the doctor who cares to consult is allowed to select his own regulator, and that thee regulator's role is undefined.

He maintains that on the "core issues" of the euthanasia controversy, namely, "how to control the practice, how to keep it from being used on those who do not want it, how to provide for public accountability," the Dutch response has proved "inadequate." He ends by questioning whether it is defensible to regard the killing of a patient by his doctor as essentially a private matter. Recalling the theme of his first chapter - that the profession of medicine is a public enterprise - he observes that a claim to euthanasia is a private claim on a public good. The prohibitions against killing patients are part of the public aspect of medicine and respect the vulnerability of patients. Any argument that doctors should now partricipate in euthanasia must establish, he contends, that he news role will not corrupt the profession so that it becomes a danger to those who do not want to die, and he adds that attempts to protect the vulnerable in the Netherlands have been, at best, "halfhearted and ineffective."

Gomez's report of the vagueness of the legal and medical criteria for permissible euthanasia and the lack of effective safeguards to ensure compliance with them contrasts markedly with the account given by Rigter, which was endorsed by a number of leading Dutch experts. How accurate is Gomez's account and how persuasive his analysis?

A Critique of Gomez

Gomez's account of the Dutch experience is largely accurate and his analysis is searching, cogent, and persuasive Indeed, there are five ways in which it could have been even more so.(2)

First, his analysis of jurisprudential developments could have been deeper. He could, for example, have explored the implications of the Supreme Court's ruling in the Alkmaar case that the decisive criterion of legality is whether the doctor has acted in accordance with "responsible medical opinion" tested by "prevailing standards of medical ethics."(3) Does this ruling not indicate that the existence of necessity is to be determined primarily by criteria fashioned by the medical profession rather than by the courts? If so, in view of thee fact that there can be disparate bodies of "responsible" medical opinion and that medical opinion can change over time, does the ruling not imply that the current criteria are essentially provisional? Interestingly, the ruling has been criticized even by Dutch supporters of euthanasia such as H.J.J. Leenen, a health lawyer, who has observed: "By referring to medical ethics the Supreme Court left the problem of the criteria for the acceptability of euthanasia on request in essence unsolved. Moreover, the reference is useless because of the... disagreement within the profession upon ethics."(4)

Gomez omits an important decision of the Supreme Court in October 1986, a decision that does little to allay concern over a slide to euthanasia without request. Whereas in the Alkmaar case the court held that the defense of necessity in the sense of "conflict of duties" was available to a doctor charged under Article 293, in its decision of 1988 the courts went further and accepted that the defense of necessity in the sense of "psychological compulsion" experienced by the doctor was also available. As a learned law professor notes in his commentary appended to the report of the case, the court "permits an appeal to psychological compulsion [psychische overmacht] a chance of success."(5) This decision appears to indicate that the court has already accepted in principle that neither a request by the patient nor unbearable suffering on his part is a prerequisite for the operation of the necessity defense, as a defendant's plea that he was overborne by psychological pressure is, logically, dependent on neither.

Secondly, although Gomez notes that in the vast majority of euthanasia cases doctors certify death by natural causes, he does not convey the full gravity of this impropriety. He could have pointed out that falsely entering death by natural causes was condemned in the 1984 KNMG report as an improper practice that should be discontinued,(6) that it was confirmed by the court of appeal in 1987 to be a criminal offense.(7) and that the proper procedure is for the doctor to notify the local medical examiner, who will examine the body and then inform the prosecutor, who will in turn ask the police to investigate. Gomez could also have revealed that reported cases for the years 1987-90 amounted to only 122, 181, 336, and 454 respectively and that only one case was prosecuted to trail.(8)

In September 1991 a government committee on euthanasia chaired by Attorney General J. Remmelink reported that its survey of doctors indicated there were 2,300 cases of euthanasia and 400 of assisted suicide in 1990. Further, it was the doctor's intention (either "explicit" or "secondary") to hasten death in a further 16,850 cases, either by withdrawing or withholding treatment (8,750 cases) or by administering opioids (8,100 cases). As there were only 454 notifications in 1990, the vast majority of cases were illegally and dishonestly certified as natural deaths.(9)

Instead, however, of formal procedures being tightened in view of consistently widespread noncompliance, they have been relaxed even further. In 1990 the Minister of Justice directed prosecutors that they were no longer to ask the police to investigate euthanasia cases unless there was some reason to suspect that there had not been compliance with the criteria. One senior prosecutor informed me that this directive required prosecutors to lower their professional standards below even the absolute minimum, and that the inquiry conducted by the medical examiner was "just a chat between doctors and no inquiry at all." He added that the directive, which had been issued against thee advice of the chief prosecutors, had been welcomed by the medical profession, who saw it as an indication of the minister's agreement with them that decisions about euthanasia should be made by doctors rather than by lawyers. The reason commonly advanced by doctors (including Gomez's interviewees) for not reporting euthanasia is to spare the patient's family a police investigation. However, even though such investigations are no longer the norm, notifications for the first seven months of 1991 came to no more than 415.(10) All this offers little support to Rigter's claim that if the situation in the Netherlands is at all unique, "it is perhaps in the wish of physicians to subject their actions to public scrutiny."(11)

Third, it is doubtful whether the case histories Gomez cites contribute greatly to his thesis that the Dutch regulatory mechanism are inadequate. As he himself observes, there are doubts about the reliability and representativeness of these cases and his evaluation of them often founders upon a lack of sufficient detail (pp. 112-13). Moreover, he concedes that most fall within the "broadest limits" stipulated by the KNMG (p. 119).

He would, perhaps have done better to devote more attention to a closer scrutiny of the criteria themselves, both as set out by the courts and the KNMG, and as interpreted in practice by doctors. Had he done so, he might, for example, have discovered that the important criterion of consultation turns out on closer inspection to be less of a safeguard than even he suggests, for it is doubtful whether it is legally required at all. He might, moreover, have highlighted more effectively the elasticity of the criterion, that the patient's request must be entirely voluntary. Although the KNMG guidelines state that the request must be entirely voluntary. Although the KNMG guidelines state that the request must not be entirely voluntary. Although the KNMG guidelines state that the request must not be the result of pressure by others, they do not prevent the doctor from strongly recommending euthanasia. Moreover, although they state that a request for euthanasia on the ground of being a nuisance to family should be an occasion to discuss alternatives, they by no means rule out euthanasia in such a case. One of Holland's leading practitioners of euthanasia told me that he would be put in a very difficult situation if a patient told him that he really felt a nuisance to his relatives because they wanted to enjoy his estate. Asked if he would rule out euthanasia in such a case, he replied: "I ... think in the end I wouldn't because that kind of influence - these children wanting the money now - is the same kind of power from the past that. . . shaped us all. The same thing goes for religion... education... the kind of family he was raised in, all kinds of influences from the past that we can't put aside."[12]

Further, the results of a survey of general practitioners by the medical examiner Gerrit van der Wal that appeared in the KNMG journal in February 1991 do little to allay concern over variable interpretation and application of the criteria. This survey revealed that the interval between the first request for euthanasia and its performance was no more than a day in 13 percent of cases; no more than a week in another 35 percent; and between a week and a fortnight in a further 17 percent. Further, the interval between the last request for euthanasia and its performance was, in three out of five cases, no more than a day. Moreover, in 22 percent of cases there was, contrary to the guidelines, only a single request was between an hour and a week. Finally, in almost two-thirds of cases the request was purely oral.[13]

The survey's findings in relation to consultation are no less revealing; "One quarter of the general practitioners said they had not had consultation prior to euthanasia/assisted suicide . . . More serious is the finding that 12 percent ... manifestly had no form of discussion with any other caregivers either." When consultation did occur, the second opinion was in most cases a colleague rather than an independent doctor; the second doctor already knew the patient in about 60 percent of cases, and he reduced his opinion to writing in about only a quarter of cases. Finally, fewer than half the GPs consulted the patient's requests for euthanasia. Van de Wal concludes that "a substantial proportion of general practitioners is not(yet) operating in accordance with current procedural precautionary requirements."[14]

Fourth, as concern for the protection of the incompetent features largely in Gomez's critique, he could have mentioned that the State Commission on Euthanasia, which reported in 1985, recommended that the termination of incompetent patients be legalized, provided they had irreversibly lost consciousness and treatment had been suspended as pointless,[15] and that the KNMG discussion paper on handicapped neonates condoned their termination.[16] Such omissions are all the more surprising in view of the fact that one of his case histories involves the termination of an incompetent adult and another of a handicapped neonate.

Some evidence of the incidence of euthanasia without request has been provided by the Remmelink Committee, which reported that in about 1,000 cases in 1990 doctors intentionally accelerated death without a specific request from the patient (although in about half there had been some discussion with the patient or the patient had previously expressed a desire that death should be hastened). Further, in the 8,750 cases in which doctors intended to accelerate death by withholding or withdrawing treatment and in almost 5,000 of the 8,100 cases in which they intended to kill by administering opioids, the patient had not requested the hastening of death. In short , doctors stated that in 1990 they sought to accelerate death in some 20,000 cases, in almost three-quarters of which there had been no request by the patient.[17]

Finally, Gomez remarks that throughout his research he was "plagued with the sense that something other than an argument from autonomy was at work" and that he sensed some felt that certain patients were better off dead (p.137). It is unfortunate that he did not pursue this feeling and seek to ascertain, first, what his interviewees' ethical premises were, and second, whether they did not logically lead beyond voluntary euthanasia to non-voluntary and even involuntary euthanasia. Could he not, moreover, by pointing to the widespread support for euthanasia without request, particularly in relation to handicapped neonates and the permanently comatose, have made out a persuasive case that many Dutch advocates of voluntary euthanasia have in fact embraced a principle that certain lives are not worth living and that it is ethical to terminate them?

A Critique of the Netherlands

Although Gomez's critique would have been all the more incisive if honed in the five ways suggested above, the book's shortcomings should not be allowed to overshadow its achievements. Its account of the Dutch euthanasia experience is the most comprehensive and objective I have yet encountered, and its thesis that the regulatory mechanisms in the Netherlands are inadequate to protect the vulnerable and to prevent euthanasia without request is well-substantiated, measured, and convincing.

It could, of course be, argued that although euthanasia without request may be practiced in the Netherlands, it is also carried out in jurisdictions where euthanasia is unlawful, such as the US and the UK, and that the legalization of voluntary euthanasia without request. Is there not, as a spokesman for the KNMG put it to me, a choice between, on the one hand, prohibiting euthanasia and not knowing how often it is carried out and, on the other, legalizing it and knowing how most of it is carried out? The KNMG, he explained, wanted it to be controlled, and if it were prohibited it could not be controlled.[18]

But as the evidence marshaled by Gomez and others clearly indicates, all that is known with certainly is that euthanasia in the Netherlands is being practiced on a scale vastly exceeding the "known" (truthfully reported and recorded) cases. There is little sense in which it can be said, in any of its forms, to be under control. As even a supported of legalized euthanasia such as Professor Leenen has observed, not only is there an "almost total lack of control on the administration of euthanasia," but the "present legal situation makes any adequate control of the practice of euthanasia virtually impossible."[19]


[1.] Carlos F. Gomez, Regulating Death: Euthanasia and the Case of the Netherlands (New York: The Free Press, 1991). [2.] My critique of Gomez draws on my own research in the Netherlands, published as "The Law and Practice of Euthanasia in the Netherlands," Law Quarterly Review, January 1992. [3.] J.K.M. Gevers, "Legal Developments Concerning Active Euthanasia on Request in the Netherlands," Biothics 1 (1987): 159. similarly, another translation on the relevant passage in the judgment, nader zou hebben onderzocht of naar verantwoord medisch inzicht, getoetst aan in de medische ethiek geldende normen (Nederlandse Jurisprudentie, no. 106 [1985], p. 453) states that the question was whether, "according to well-considered medical judgment and in accordance with medico-ethical norms," there was a situation of necessity. This and other translations in this paper are unless the contrary is apparent, by Hub Zwart of the Insituut voor Gezondheidsethiek, Maastricht, for whose assistance I am most grateful. [4.] H.J.J. Leenen, "Euthanasia, Assistance to Suicide and the Law: Developments in the Netherlands," Health Policy 8(1987): 201. [5.] Netherlandse jurisprudentie, 607 (1987): 2129. See also "The High Court of the Hague, Case No. 79065, October 21, 1986," ed. and trans. Barry A. Bostrom and Walter Lagerwey, Issues in Law & Medicine 3 (1988): 445. [6.] Quotations from the report - "Standpunt inzake euthanasie," Medisch Contact 39 (1984): 990--are taken from a KNMG translation entitled "Vision on Euthansia," which states that it has been updated to take account of developments in law and politics up to the end of 1986. [7.] "Court of the Hague (Penal Chamber) April 2, 1987," ed. and trans. Barry A. Bostrom and Walter Lagerway, Issues in Law & Medicine 3 (1988): 451. [8.] Javerslaag Openbaar Ministerie, 1990, p. 59. [9.] Richard Fenigsen, "The Netherlands: First Reactions to the Report of the Committee Reactions to the Report of the Committee on Euthanasia" (unpublished summary of Medische beslissingen rondt net levenseinde: Rapport van de Commissie onderzoek medische praktijk inzake euthanasie [The Hague: Sdu Uitgeverij Plantijnstraat, 1991], pp. 1-2). See also Paul J. van der Maas et al., "Euthanasia and Other Medical Decisions Concerning the End of Life," Lancet 338 (1991): 669; and K. F. Gunning, "Euthanasia," Lancet 338 (1991): 1010. [10.] Personal communication, Dutch Ministry of Justice, 6 September 1991. [11.] Henk Rigter, "Euthanasia in the Netherlands: Distinguishing Facts from Fiction," Special Supplement, Hastings Center Report 19, no. 1 (1989): 31-32. [12.] Interview, Dr. Herbert Cohen, 26 July 1989. [13.] G. van der Wal et al., "Euthanasie en hulp bij zelfdoding" [Euthanasia and medically assisted suicide], Medisch Contact 46, no. 7 (1991): 2121-14. The translation I have used of van der Wal's survey is by the Hemlock Society. [14.] G. van der Wal et al., "Toesting in geval van euthanasie of hulp bij zelfdoding" [Determining cases of euthanasia or assisted suicide], Medisch Contact 46, no. 8 (1991): 239-41. [15.] "Final Report of the Netherlands State Commission on Euthanasia: An English Summary," Bioethics 1 (1987): 168. [16.] Discussienota inzake levensbeeindigend handelen bij wilsonbekwame patienten, deel 1: zwaar-defecte pasgeborenen [Discussion paper regarding termination of treatment for incompetent patients, part 1: severely impaired neonates] (1988). [17.] Fenigsen, "The Netherlands," pp. 1-2; van der Maas et al., "Euthanasia," pp. 671-72; Gunning, "Euthanasia," p. 1010. [18.] Interview, Dr. Martens, 11 July 1989. [19.] "Legal Aspects of Euthanasia, Assistance to Suicide and Terminating the Medical Treatment of Incompetent Patients" (paper delivered at a conference on euthanasia, Insituut voor Gezondheidsethiek, Maastricht, 24 December 1990).
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Title Annotation:Dying Well? A Colloquy on Euthanasia and Assisted Suicide
Author:Keown, John
Publication:The Hastings Center Report
Date:Mar 1, 1992
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