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The Remmelink study: two years later.

In 1990 the Dutch government appointed a committee to investigate medical decisions concerning the end of life. The committee was chaired by Professor J. Remmelink, who was at that time the attorney general of the Dutch Supreme Court. Although the immediate motivation for this investigation was the ongoing discussion in Parliament about legalizing euthanasia, the committee was explicitly asked to do more than explore the incidence of euthanasia. In fact, it was asked by the government to investigate all kinds of medical decisions concerning the end of life. Consequently, euthanasia-related decisions such as assisted suicide and life-terminating acts without the explicit request of the patient were also studied, as were decisions not to treat and decisions to alleviate pain and other symptoms with possibly life-shortening effect. The Remmelink Committee did not perform this investigation itself but instead asked the Department of Public Health of the Erasmus University to form a fully independent research group to do the actual work. We were members of this research group.

In this article, after a short description of the main results, we will discuss the impact of our report to the Remmelink Committee on the Dutch debate about end-of-life legislation and some of the implications of the data.

Results

We have previously described details of the study design elsewhere.[1] For this article it suffices to state that there were three different substudies: interviews with physicians, questionnaires mailed to the attending physicians of deceased persons, and a prospective survey. The response rates of the substudies were 91 percent, 76 percent, and 80 percent respectively. In total we obtained information about approximately 10,000 deaths. The total number of deaths in the Netherlands is 129,000 per year.

Most of the doctors we interviewed found voluntary euthanasia or assisted suicide acceptable under special circumstances. Fifty-four percent of them had performed euthanasia or assisted suicide at some time or other, and a further 34 percent considered it conceivable that they would do so, although some of them could conceive of this only under extreme conditions. Although 12 percent of the physicians indicated that they would never perform euthanasia or assist in suicide, two-thirds of these (8 percent of the total) would refer patients requesting such help to a colleague. A final 4 percent refused to have anything to do with such requests.

We found that 2,300 cases of euthanasia (1.8% of all annual deaths) and 400 cases of assisted suicide (0.3% of all deaths) occurred in 1990. Nineteen hundred of these 2,700 cases were performed by general practitioners at home, 750 by specialists in hospitals, and approximately 20 by nursing home physicians.

In 22,500 cases (17.5%) a decision had been taken not to treat; the same number of decisions were made to alleviate pain and other symptoms even if doing so hastened the patient's death. Life-terminating acts undertaken without the patient's explicit request appeared to occur 1000 times (0.8%). As we return to it below, we will expand the description of the results for this type of act.

First, however, we must explain the study design somewhat. As is commonly known, in the Netherlands euthanasia is defined as ending a patient's life at the patient's explicit request. Our category of life-terminating acts without explicit request, then, was derived by excluding euthanasia. The category included all those cases in which there was patient involvement but in which this had not reached the stage of an explicit request. In 59 percent (600) of cases in this category there was some such patient involvement. The whole category involving no explicit request can best be characterized as concerning patients who were near death and clearly suffering grievously. The decision to end their lives was most often made within hospitals (710 times yearly), less often in general practice (270) and nursing homes (50). In two-thirds of cases opioids or sedatives had been the drugs used. The decision to hasten death was nearly always taken after consultation with the family, nurses, or one or more colleagues. In all situations in which there had been no discussion with the patient and in which no wish of the patient was known, the patients were incompetent. Recently we described some case histories, illustrating the spectrum of cases in the category.[2]

Impact

The publication of the first nationwide incidence of medical decisions concerning the end of life raised a lot of discussion. Both proponents and opponents of euthanasia claimed that their point was proven by the numbers described. We commented on some of these "dances with data" elsewhere.[3] However, in this article we will concentrate on the impact of the study on legislation with respect to euthanasia and other medical decisions concerning the end of life.

At the time the committee was formed, the legal position of the physician who had performed euthanasia (or assisted suicide) was quite clear. He or she was open to criminal prosecution, since both actions are forbidden by the Dutch Penal Code. In spite of this, most physicians performing euthanasia were not prosecuted because case law had been developing since 1973 to the effect that physicians would not be punished if they acted carefully and prudently. The basis of this law is the doctrine of "force majeure," something that compels the physician to act. He or she is confronted with conflicting duties: toward his or her patient as caregiver, and toward the law as citizen. In addition to being confronted by this conflict of duties the physician must, to remain unprosecuted, meet the following criteria for due care: (1) a voluntary request of the patient; (2) a well-informed and well-considered request; (3) a durable wish; (4) unacceptable suffering without alternatives for relief; and (5) consultation of a colleague.

In spite of this legal clarity, there were large differences in the way physicians who had performed euthanasia and notified the authorities were treated. In one district, police officers would come close to arresting the physician, while in the other, agreements between the public prosecutor and local physicians resulted in a more respectful procedure and in higher notification rates.

These large differences in the treatment of physicians were unacceptable to the Royal Dutch Medical Association, which made a uniform notification procedure a condition for supporting the Remmelink study. As the study would have been nearly impossible without the support and recommendation of the association, the Minister of justice in 1990 agreed upon this uniform procedure. It is as follows: (1) the physician does not issue a declaration of natural death; (2) he or she informs the local medical examiner by means of an extensive questionnaire; (3) the medical examiner then reports to the public prosecutor; (4) the public prosecutor decides whether prosecution must be started.

In September 1991 the Remmelink Committee published its report. In November of the same year, the government stated its position on future legislation. Its proposal was to amend the Burial Act to include the four-step notification procedure for cases of euthanasia and assisted suicide. In this way the notification procedure was given statutory authority--which of course puts it on a firmer basis than an agreement between the Minister of justice and the Dutch medical association. The proposal is mainly procedural in character; the Penal Code itself will not be changed. This means that performing euthanasia and assisting suicide remain criminal under the Penal Code. The proposal was sent to Parliament in April 1992 and accepted in February 1993. At present it is pending before the Senate, which will probably discuss the proposal during the last months of 1993.

The effect of the uniform notification procedure has become clear by now. It came into effect in the beginning of 1991, shortly after the gathering of data for our study ended. In that year physicians were still sitting on the fence and reported only 591 cases of euthanasia or assisted suicide out of a total of approximately 2,700 cases. In 1992, however, 1,323 cases were reported. This amounts to 49 percent of cases, assuming that the incidence of euthanasia and assisted suicide has remained constant since 1990. In retrospect, with respect to legislation the acceptance of the uniform notification procedure has probably been the most important change the Remmelink report has brought about, even though it all happened before a single interview had taken place.

Clearly, the outcome of the Remmelink report had little to do with the design of the notification procedure: that was decided upon just before the study really took off. The range of acts covered by the procedure, however, was strongly influenced by the data the study produced. The incidence of voluntary euthanasia and assisted suicide did not really shock many people. What did shock them were the 1,000 cases where death was hastened without explicit request.

In responding to the Remmelink report the Dutch government stated that cases where explicit request was lacking should be reported in the same way as the euthanasia and assisted suicide cases, but that they should be treated differently by the district attorney. Legally speaking, there is no question that these cases should be seen as anything but murder, although the possibility that a court will accept an appeal to force majeure in circumstances of exceptional suffering cannot be rided out. The fact that Dutch law, by way of case law, has come to tolerate euthanasia and assisted suicide by no means implies that it will tolerate life-terminating acts without explicit request of the patient. This, however, is often overlooked in the publicity the changes in the law have drawn abroad.

In our opinion, however, the proposal to extend the notification procedure to include cases without explicit request might create the false impression that these life-terminating acts can be as legitimate as euthanasia and assisted suicide. Also, it is very uncertain that the proposal will produce the effect desired. A stricter prosecution policy for life-terminating acts without explicit request of the patient will deter physicians from reporting them, while a less stringent policy will obscure the legal difference between euthanasia and acts terminating life without explicit request. However, it is not easy to develop a satisfactory alternative.

Implication

The cases where explicit request is lacking created a new dimension in the Dutch euthanasia debate. Since the middle of the 1980s, this debate had been focused on euthanasia and assisted suicide with the explicit request of the patient as a central feature. In part this had been a deliberate narrowing of the discussion because it was felt that consensus was most likely to be achieved for these cases. The Dutch even changed their definition of euthanasia to include only the cases in which there was an explicit request of the patient. Thus, a feature that might possibly justify the procedure was turned into a necessary condition for performing it.

The description of the cases involving life-terminating acts without the patient's explicit request has broadened the discussion again. But what does their appearance in the Remmelink report mean? Does it prove that the Dutch are skiing down a slippery slope? For many years, Dutch commentators limited themselves to cases in which euthanasia was requested; cases where there was no explicit request became known only recently through the Remmelink report. Thus the impression may have arisen that the Dutch began by hastening the end of life on request and ended up with life-terminating acts that the patient had not explicitly requested.

This, however, is not necessarily true. First of all, we simply do not know whether unrequested life-terminating acts occurred less or more often in the past. To demonstrate a slippery slope one would need to show that something changed after introducing a certain practice, and for this at least two investigations would be required. Unfortunately, there is no ten- or twenty-year-old equivalent to our study.

In spite of the lack of older studies, we have an indication that Dutch doctors are not becoming more permissive with respect to euthanasia. At interview we asked the physicians whether their opinion concerning euthanasia had changed over the years. All physicians who had changed their opinion (39%) were asked to elaborate. Their answers suggest that doctors who start with strong value-laden opinions either in favor of or against euthanasia gradually move toward a more moderate position. This happens mostly in reaction to personal experience with dying patients. Most of those who had become more restrictive were still prepared to perform euthanasia, but only if they completely agreed with the patient's wish. Nearly all who had become more permissive could now conceive of situations in which they would be prepared to perform euthanasia or at least to refer a patient to a colleague. This confirms the overall picture, described above, that most doctors are prepared to perform euthanasia, but only if certain conditions are met. We conclude that no empirical data can be marshalled to support the slippery slope argument against the Dutch.

But is it not true that once one accepts euthanasia and assisted suicide, the principle of universalizability forces one to accept termination of life without explicit request, at least in some circumstances, as well?[4] In our view the answer to this question must be affirmative.

To understand Dutch euthanasia practice it is essential to know that the request of the patient is not the only basis for the physician's decision. No patient is guaranteed euthanasia, and no physician is obliged to comply with a request for it. Apart from the request there must always be the doctor's conviction that euthanasia is the only acceptable way out of the suffering. In our opinion this is an important safeguard if the practice of euthanasia is to be a responsible one. The importance of the physician's conviction is reflected in our data: physicians rejected two-thirds of all explicit requests for euthanasia or assisted suicide. The reasons were mostly that the physician saw alternatives or had objections in the particular case. Our conclusion is that doctors themselves are responsible moral agents, not simply instruments of the patient's will. Euthanasia, therefore, is always based on both autonomy and beneficence. Although we think that both the autonomous wish and the suffering are necessary conditions for performing euthanasia, we can conceive of situations which no one would want to live through. In such cases of extreme suffering, life might justifiably be terminated without the patient's explicit request.

There is a last point that we would like to make concerning the acceptability of euthanasia. In the March-April 1992 issue of the Report, Daniel Callahan warned against a form of medicine that tried to relieve all suffering, including that which comes from "anguish or despair at the human condition."[5] We agree completely. Medicine cannot turn life into an everlasting state of happiness, and it should not strive to do so.

In spite of this, we think that sometimes illness and dying come with a kind of suffering that leaves no room for anything else. That kind of suffering absorbs virtually all the energy left in the patient and reduces human life to pointless surviving. In such cases the relief of suffering by means of euthanasia can be part of good medicine. Euthanasia in those cases is not a swift answer to old questions like, Why must I die? or, Why in pain? It is an answer to an individual who no longer has the energy even to deal with these questions.

Future

A last topic of this article is the question, Where do we go from here? We think that there are several epidemiological reasons to presume a rise in the frequency of medical decisions concerning the end of life in Western countries. There is a demographic shift toward older populations, with an increasing proportion of cancer deaths. Also, there is a growing use of life-prolonging technologies. We do not think, however, that this means that the incidence of all medical decisions concerning the end of life will rise. With more possibilities for an open discussion between doctor and patient and growing readiness (and skill) of physicians to discuss end-of-life decisions, there might be a drop in the incidence of medical decisions concerning the end of life made without patient involvement, including life-terminating acts that have not been explicitly requested by the patient.

The Netherlands has been closely watched with respect to initiatives taken regarding euthanasia. However, we do not think that the Dutch experience is easily transferable to other countries with a different social structure and different legal and health care systems. Therefore, we hope that other countries will emulate the Dutch by performing nationwide studies on medical decisions concerning the end of life. Such decisions are, after all, a part of modern medicine, and we had better openly discuss them.

References

[1.] Paul J. van der Maas et al.,"Euthanasia and Other Medical Decisions Concerning the End of Life," Lancet 338 (1991): 669-74; and Paul J. van der Maas, Johannes J. M. van Delden, and Loes Pijnenborg, Medical Decisions Concerning the End of Life (Amsterdam: Elsevier Science Publishers, 1992). [2.] Loes Pijnenborg et al., "Life-Terminating Acts without Explicit Request of the Patient," Lancet 341 (1993): 1196-99. [3.] Johannes J. M. van Delden, Loes Pijnenborg, and Paul J. van der Maas, "Dances with Data," Bioethics 7 (1993): 323-29. [4.] Wibren van der Burg correctly claims that there are different logical versions of the slippery slope argument, one of which is derived from the principle of universalizability. See Wibren van der Burg, "The Slippery Slope Argument," Ethics 102 (1991): 42-65. [5.] Daniel Callahan, "When Self-Determination Runs Amok," Hastings Center Report 22, no. 2 (1992): 52-55, at 55.
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Title Annotation:assisted suicide
Author:Delden, Johannes J.M. van; Pijnenborg, Loes; Maas, Paul J. van der
Publication:The Hastings Center Report
Date:Nov 1, 1993
Words:2928
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