Lessons From the Dutch

According to a study undertaken by Dr Herbert Hendin and others, reports that Euthanasia in the Netherlands has not resulted in a 'slippery slope' scenario are misleading.
  • There was found an inability to regulate the process within established rules.
  • The ending of a life without the patient's consent is almost never reported.
  • Dutch investigators minimize the significance of the number of deaths without consent by explaining that the patients were incompetent.
  • There has been an erosion of medical standards in the care of terminally ill patients in the Netherlands.
  • Euthanasia has become an accepted way of dealing with serious or terminal illness in the Netherlands. 
  • Palliative care is one of the casualties, while hospice care lags behind that of other countries.
By: Herbert Hendin, MD (AFSP), Chris Rutenfrans, PhD (Dept. of Justice, The Hague), Zbigniew Zylicz, MD (Hospice Rosenhuyvel)

Dr Hendin was one of a few foreign researchers who had the opportunity to extensively study the situation in the Netherlands, discuss specific cases with leading Dutch practitioners and interview Dutch government-sponsored euthanasia researchers about their work.

The researchers all, independently, concluded that guidelines established by the Dutch for the practice of assisted suicide and euthanasia were consistently violated and could not be enforced.

For two decades, both physician-assisted suicide and euthanasia have been given legal sanction in the Netherlands. In response to domestic and international concern about their policies, the Dutch government appointed a commission that oversaw a study of the practice of physician-assisted suicide and euthanasia in 1990 (1). That study, which was largely replicated in a 1995 study, was supported by the Royal Dutch Medical Association with the promise that physicians who participated would receive immunity from prosecution for anything they revealed.

In 1996, the investigators published a report of their new findings in Dutch (2) and summarized their work in two articles in the New England Journal of Medicine (3,4), supported by an editorial in that journal (5). These reports have given a favorable interpretation to what could be seen as evidence of little or no improvement, by declaring that since matters have not grown worse, there is no evidence, {"physicians in the Netherlands are moving down a slippery slope" (3)[pp.1705]). That conclusion is misleading.

The Slippery Slope
In this context, the "slippery slope" is the gradual extension of assisted suicide to widening groups of patients,after it is legally permitted for patients designated as terminally ill. During the past two decades, the Netherlands has moved, from considering assisted suicide (preferred over euthanasia by the Dutch Voluntary Euthanasia Society), to giving legal sanction to both physician-assisted suicide and euthanasia; from euthanasia for terminally ill patients to euthanasia for those who are chronically ill; from euthanasia for physical illness to euthanasia for psychological distress; and from voluntary euthanasia to nonvoluntary and involuntary euthanasia (6-8).

According to the Royal Dutch Medical Association, it did not seem reasonable, medically, legally, or morally, to sanction only assisted suicide, thereby denying more active medical help, in the form of euthanasia, to those who could not effect their own deaths (9). Nor, could the Dutch deny assisted suicide or euthanasia to the chronically ill, who have longer to suffer than the terminally ill, or to those who have psychological pain not - associated with physical disease. To do so would be a form of discrimination. Involuntary euthanasia is not legally sanctioned by the Dutch, but it is increasingly excused as necessary to end suffering in patients not competent to choose for themselves.

Except for the legal sanction of euthanasia for mental suffering without physical illness, all of these other expansions of the indications for euthanasia had taken place by 1990 and were documented by the 1990 study.

Comparing the data from the 1990 and 1995 studies is revealing. From 1990 to 1995, the death rate from euthanasia increased from 1.9% to 2.3% of all deaths when based on interviews with 405 Dutch physicians selected from a stratified random sample. The rate increased from 1.7% to 2.4% when based on responses to a questionnaire completed by more than 4600 physicians in both years. The increase in euthanasia deaths, ranging from 21% to 40% (from 671 to 1064 deaths), would seem significant, but the investigators do not regard it as such even though they give "generational and cultural changes in patients" attitudes" as a possible explanation for the increase.(3[pp.1703]) The investigators describe the physician-assisted suicide rates as remaining constant and low although, based on the interview study, the actual number increased from 380 to 542.

Guidelines have Failed
More slippery, than the extension of euthanasia to more patients, is the inability to regulate the process within established rules. Virtually every guideline set up by the Dutch-a voluntary, well-considered, persistent request where intolerable suffering that cannot be relieved; consultation; and reporting of cases has failed to protect patients, or has been modified or violated.(10)

Many of the violations are evident from the officially sanctioned studies. For example, in the 1990 study, 50% of physicians reported that they considered it appropriate to suggest euthanasia to patients.(1[pp.101-102]) Neither the physicians nor the study's investigators seem to acknowledge how much the voluntariness of the process may be compromised by such a suggestion.(11)

Given the concerned reaction of those outside the Netherlands to physicians suggesting euthanasia, it is surprising that the investigators make no reference to it in their English language articles (3,4). The Dutch report reveals, however, that the percentage of physicians, who feel it is appropriate to suggest euthanasia to patients, has actually somewhat increased (2).

Under-reporting continues to be a serious problem. In only 18% of cases, in 1990, had physicians reported their euthanasia cases to the authorities, as required by Dutch guidelines. To encourage more reporting of cases, a simplified notification procedure ensuring that physicians will not be prosecuted if guidelines were followed was enacted.

The investigators credit this procedural change with contributing to an increase in the cases reported to 41% percent by 1995, while acknowledging that a 59% rate of un-reported cases is still disturbingly high. The 1995 interviews with physicians revealed that in only 11% of the unreported cases was there consultation with another physician(4[pp.1708]).

Moreover, almost 20% of the physicians’ most recent un-reported cases involved ending of a life without the patient's consent (4[pp.1708]). Such cases, both the 1990 and 1995 studies revealed, were virtually never reported (l[pp.65],4[pl7lO]).

Death Without Consent
The most alarming concern, to arise from the Dutch studies, has been the documentation of cases in which patients, who have not given their consent, have their lives ended by physicians. The 1990 study revealed that in 0.8% of the deaths, more than 1000 cases in the Netherlands each year, physicians admitted they had actively caused death without the explicit consent of the patient.

The 1995 figure is 0.7% (fewer than 1000 cases), but the researchers, while pointing to the decline, concede that differences in the way this particular information was obtained, make its significance uncertain. In both studies, however, about a quarter of physicians stated that they had "terminated the lives of patients without an explicit request" from the patient to do so and a third more of the physicians could conceive of doing so.

The use of the word "explicit" is somewhat inaccurate since, in 48% of these cases, there was no request of any kind, (3[pp.1704]) and in the others, there were mainly references to patients’ earlier statements of not wanting to suffer (l[pp.5l]).

The 1990 study documented, and the 1995 study confirms, that cases classified, as "termination of the patient without explicit request", were a fraction of the nonvoluntary and involuntary euthanasia cases. International attention had centered on the 1350 cases, 1% of all Dutch deaths in 1990, in which physicians gave pain medication with the explicit intention of ending the patient's life (1[pp.73],12[pp.270]) The investigators minimized the number of patients put to death who had not requested it, by not including these 1350 patients, in that category.

By 1995, there had been an increase in the number of deaths in which physicians gave pain medication, with the explicit intention of ending the patient's life, from 1350 cases (1% of all Dutch deaths) to 1896 (1.4% of all Dutch deaths)(3[p1700]). These are comparisons that the Dutch investigators do not make (see Table).

As reported by the physicians, in the 1995 study, in more than 80% of these cases (1537 deaths), no request for death was made by the patient (3[pp.1704]).

Since researchers around the world have treated these deaths as nonvoluntary and involuntary (if the patient was competent) euthanasia, they will see this as a striking increase in the number of cases terminated without request and a refutation of the investigators’ claim that there has been perhaps a slight decrease in the number of such cases.

If one totals all the deaths that resulted from euthanasia, assisted suicide, ending the life of a patient without consent, and giving opioids with the explicit intention of ending life, the estimated number of deaths, caused by active intervention by physicians, has increased from 4813 (3.7% of all deaths) in 1990 to 6368 (4.7% of all deaths) in 1995 (Table). Based on data from the questionnaire study, this is an increase of 27% in cases in which physicians actively intervened to cause death (the interview study documents a 20% increase).

The Dutch investigators minimize the significance of the number of deaths without consent by explaining that the patients were incompetent (3[pp.1702]). But in the 1995 study, 21% of the individuals classified as "patients whose lives were ended without explicit request" were competent: in the 1990 study, 37% were competent [l (pp.l704)] We are not told what percentage of those patients' who were given pain medication intended to end their lives without discussing it with them, were competent, but analysis of the data for opioid administration indicates that it is likely to be at least 20%.

More than 4000 additional competent patients were given pain medication in amounts likely to end their lives by physicians who did not discuss the decision with them, but whose primary intention was not to end their lives (l[pp.75],3[pp.l700,l704]).

Whether the intention was to end life, or whether death was simply likely, physicians usually gave as the reason for not discussing the decisions with the patients, that they had previously had some discussion of the subject with them (3[pp.1704]).

Yet, it seems incomprehensible that a physician would terminate or put at risk the life of a competent patient on the basis of a previous discussion without checking what the patient currently felt.

An illustration given by the attorney for the Dutch Voluntary Euthanasia Society of why it was often necessary for physicians to end the lives of competent patients without their consent, was the case of a nun whose physician ended her life a few days before she would have died because she was in excruciating pain but her religious convictions did not permit her to ask for death (8[pp.97]).

In another case, a Dutch patient with disseminated breast cancer, who had said she did not want euthanasia, had her life ended because in the physician’s words, "It could have taken another week before she died. I just needed this bed" (13).

Interactive Decisions
Since the government-sanctioned Dutch studies in 1990 and 1995 are primarily numerical and categorical, they do not examine the interactions between physicians, patients, and families that determines the decision for euthanasia. We need to look elsewhere for a fuller picture. Other studies conducted in the Netherlands have indicated how voluntariness is compromised, alternatives are not presented, and the criterion of unrelievable suffering is bypassed (8,10,12,13). A few examples help to illustrate our concerns.

A wife who no longer wished to care for her sick husband, gave him a choice between euthanasia and admission to a home for the chronically ill. The man, afraid of being left to the mercy of strangers in an unfamiliar place, chose to be killed; the doctor, although aware of the coercion, ended the man's life"(14).

A healthy, 50-year-old woman, who lost her son recently to cancer, became depressed, refused treatment for her depression, and said she would accept help only in dying, was assisted in suicide by her psychiatrist within four months of her son’s death. Her refusal of treatment was considered by her physician and the Dutch courts to make her suffering unrelievable (15).

Another Dutch physician, who was filmed ending the life of a patient recently diagnosed with amyotrophic lateral sclerosis, says of the patient, "I can give him the finest wheelchair there is, but in the end, it is only a stopgap. He's going to die and he knows it" (16,17). That death may be years away, but a physician with this attitude may not be able to present alternatives to this patient.

From our point of view there has been an erosion of medical standards in the care of terminally ill patients in the Netherlands. The 1990 and 1995 studies document that 59% of Dutch physicians do not report their cases of assisted suicide and euthanasia, more than 50% feel free to suggest euthanasia to their patients, and about 25% admit to ending patients’ lives without their consent. How is it that the Dutch researchers are so sanguine about their data?

Political considerations have admittedly influenced the studies and their conclusions. Why were physicians not challenged when they offered implausible explanations for ending fully competent patients’ lives without consulting them?

The investigators have explained that securing and retaining the cooperation of the Royal Dutch Medical Association and the participating physicians demanded that the physicians and policies not be challenged (8[p77-78]). In addition, the researchers draw conclusions that exceed their evidence.

The 1990 and 1995 studies accepted physicians’ assertions that their patients had received the best possible care and that there was no alternative to euthanasia. These statements are not supported by any objective data. Indeed, studies have demonstrated the inadequacy of training of physicians in palliative care in the Netherlands (18,19).

Since the statements of the responding physicians were accepted by the investigators without challenge, there was no exploration of possible alternatives to euthanasia (20).

Both the 1990 and 1995 studies are flawed for all of the above reasons. When cases are classified and counted so as to minimize disturbing findings, when implausible explanations are accepted without challenge, and when conclusions that might offend are not stated, there is need for more objective and inclusive exploration and analysis.

That exploration and analysis will have to include a realization that notification by physicians of all euthanasia cases would not by itself diminish euthanasia abuse in the Netherlands. Nor could better counting and classifying cases do the job without exploring the interactive decision-making process that is at the heart of euthanasia and is not addressed in the Dutch research.

Dutch efforts at regulating assisted suicide and euthanasia have served as a model for proposed statutes in the United States and other countries (21). Yet, the Dutch experience indicates that these practices defy adequate regulation.

Given legal sanction, euthanasia, intended originally for the exceptional case, has become an accepted way of dealing with serious or terminal illness in the Netherlands. In the process, palliative care is one of the casualties, while hospice care lags behind that of other countries (18,19,22).

For the Dutch, accepting the option of euthanasia seems to be costing them the opportunity to take advantage of the developments in palliative care of the past decade. For other countries, knowledge of these developments still remains to be disseminated and implemented. We should accept that challenge and avoid making the Dutch mistake.

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  16. 'Death on Request' was first shown in the Netherlands on the Ikon Television Network in 1994. Segment shown in the United States with English voice-over on Prime Time Live on ABC, December 8, 1994.
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Printed and Published in the United States of America by the American Medical Association

Appeared in: Journal of the American Medical Association, June 4, 1997-Vol 277, No. 21.
Reprints: Herbert Hendin, MD, , 120 Wall St, New York, NY 10005)