Lessons From the Dutch Experience

Lessons From the Dutch Experience

Virtually every guideline set up by the Dutch to regulate euthanasia has been modified or violated with impunity. Despite their best efforts, the Dutch have been able to get only 60 percent of their doctors to report their euthanasia cases

  • A study of assisted suicide and euthanasia in the Netherlands concluded that it is not possible to sanction and regulate euthanasia within any prescribed guidelines.
  • It is often the doctor, not the patient, who determines the choice for death.
  • Practicing euthanasia legally has encouraged doctors to make life and death decisions without consulting the patient.
  • More requests for euthanasia come from families than from patients themselves.
  • Patients are pressured to request euthanasia.
by Herbert Hendin, M.D.
Summary for Congressional Subcommittee on the Constitution:
Suicide, Assisted Suicide and Euthanasia:

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.

Th 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.


Does our need to care for people, who are terminally ill and to reduce their suffering, require us to give physicians the right to end patients' lives?

Asking this question helps make us aware that neither legalizing nor forbidding physician-assisted suicide or euthanasia addresses the much larger problem of providing humane care for those who are terminally ill.

To some degree the call for legalization is a symptom of our failure to develop a better response to the problems of dying and the fear of unbearable pain or artificial prolongation of life in intolerable circumstances.

The uninitiated are apt to assume that the seriously or terminally ill who wish to end their lives are different than those who are otherwise suicidal. The first reaction of many patients to the knowledge of serious illness and possible death, however, is terror, depression, and a wish to die. Such patients are not significantly different from patients who react to other crises in their lives with the desire to end the crisis by ending their lives.

Many patients and physicians displace anxieties about death onto the circumstances of dying; pain, dependence, loss of dignity, and the unpleasant side effects of medical treatments. Focusing on, or becoming enraged at the process, distracts from the fear of death itself.

Suicidal patients are also prone to make conditions on life: I won't live ..."without my husband,"..."if I lose my looks, power, prestige or health," or "if I am going to die soon." They are afflicted by the need to make demands on life that cannot be fulfilled. Determining the time, place, and circumstances of their death is the most dramatic expression of their need for control.

Depression, often precipitated by discovering a serious illness, exaggerates the tendency toward seeing problems in black-or-white terms. When a patient finds a doctor who shares the view that life is only worth living if certain conditions are met, the patient's rigidity is reinforced. 
Patients are not alone in their inability to tolerate situations they cannot control.

From the physician's viewpoint, Lewis Thomas has written insightfully about the sense of failure and helplessness that doctors may experience in the face of death; such feelings might explain why doctors have such difficulty discussing terminal illness with patients.

A majority of doctors avoid such discussions, while most patients would prefer frank talk. These feelings might also explain both doctors' tendency to use excessive measures to maintain life and their need to make death a physician's decision.

By deciding when patients die, by making death a medical decision, the physician preserves the illusion of mastery over the disease and the accompanying feelings of helplessness. The physician, not the illness, is responsible for the death. Assisting suicide and providing euthanasia become ways of dealing with the frustration of being unable to cure the disease.

The request for assisted suicide is also usually made with as much ambivalence as are most suicide attempts. If the doctor does not recognize that ambivalence as well as the anxiety and depression that underlie the patient's request for death, the patient may become trapped by that request and die in a state of unrecognized terror.

A few years ago, a young professional in his early thirties who had acute myelocytic leukemia was referred to me for consultation. With medical treatment, Tim was given a 25 percent chance of survival; without it, he was told, he would die in a few months.

Tim, an ambitious executive whose focus on career success had led him to neglect his relationships with his wife and family, was stunned. His immediate reaction was a desperate, angry preoccupation with suicide and a request for support in carrying it out. He was worried about becoming dependent and feared both the symptoms of his disease and the side effects of treatment.

Tim's anxieties about the painful circumstances that would surround his death were not irrational, but all his fears about dying amplified them. Once Tim and I could talk about the possibility or likelihood of his dying--what separation from his family and the destruction of his body meant to him--his desperation subsided.

He accepted medical treatment and used the remaining months of his life to become closer to his wife and parents. Two days before he died, Tim talked about what he would have missed without the opportunity for a loving parting.

If assisted suicide were legal, as an Oregon law now being contested in the courts would make it, Tim probably would have asked a doctor's help in taking his own life. Because he was mentally competent, he would have qualified for assisted suicide and would surely have found a doctor who would have agreed to his request.

I have just completed a study of assisted suicide and euthanasia in the Netherlands where both are accepted practice. Early in my work, in a film, Appointment with Death, intended to promote euthanasia, that I was shown by the Dutch Voluntary Euthanasia Society, I was reminded of Tim by seeing an example of how a physician's failure to deal with a patient's fear of death led to a premature ending of the patient's life.

A forty-two year old man was diagnosed as HIV positive. He had no physical symptoms, but had seen others suffer with them and wanted his physician's assistance in dying. The doctor compassionately explained to him that he might live for some years symptom-free.

Over time the patient repeated his request for euthanasia and eventually his doctor acceded to it. The man was clearly depressed and overwhelmed by the news of his situation. The doctor kept establishing that the patient was persistent in his request and competent to make the decision - criteria a Dutch patient must meet - but did not address the terror that underlay it.

Consultation in the case was pro forma. A colleague of the doctor's saw the patient briefly to confirm his wishes. In many cases the consultant does not see the patient at all. With a psychologically sensitive physician looking for more than justification to respond to the request to die, more likely in a culture not so accepting of euthanasia, this man would not have needed to be put to death.

In the cases presented to me by physicians, in the Netherlands, and in cases I have reviewed in this country, I saw such examples many times over. Patients whose fear of death precipitates them into seeking assisted suicide or euthanasia may be quite different from those who are concerned that they may suffer unduly in the last days of their lives.

Whenever, as in the Netherlands, or in the recent Oregon law, now under challenge in the courts, there is legal sanction for assisted suicide for patients who are not in the last weeks of their lives, the two groups of patients become hopelessly confused. In such a situation, basically suicidal patients become the willing victims of euthanasia practitioners.

In the past decade, by making assisted suicide and euthanasia easily available, the Dutch have significantly reduced the suicide rate of those over fifty in the population. The likelihood that patients would end their own lives if euthanasia was not available to them was one of the justifications given by Dutch doctors for providing such help.

Of course, euthanasia advocates can maintain that making suicide "unnecessary" for those over fifty who are physically ill, is a benefit of legalization rather than a sign of abuse. Such an attitude depends, of course, on whether one believes that there are alternatives to assisted suicide or euthanasia, for dealing with the problems of older people who become ill.

Among an older population, physical illness of all types is common, and many, who have trouble coping with physical illness, became suicidal. In a culture accepting of euthanasia, their distress may be accepted as a legitimate reason for euthanasia. It may be more than ironic to describe euthanasia as the Dutch cure for suicide.

That seems even more true since the Dutch have recently accepted mental suffering without physical illness as justification for assisted suicide and euthanasia. How this acceptance translates into practice with a psychiatric patient is evident in a case that has received a good deal of international attention since it was this case that formally established in the Netherlands that mental suffering was sufficient justification for assisted suicide.

In the spring of 1993, a Dutch court in Assen ruled that a psychiatrist was justified in assisting in the suicide of his patient, a physically healthy but grief-stricken 50-year-old social worker mourning the death of her son who came to the psychiatrist saying she wanted death, not treatment.

I had a chance to spend about seven hours interviewing the psychiatrist involved. Without going into the details of the case which I have discussed elsewhere, it is worth noting that the psychiatrist assisted in the patient's suicide a little over two months after she came to see him, about four months after her younger son died of cancer at 20.

Discussion of the case centered around whether the psychiatrist, supported by experts, was right in his contention that the woman suffered from an understandable and untreatable grief.

Although no one should underestimate the grief of a mother who has lost a beloved child, life offers ways to cope with such grief and time alone was likely to have altered her mood.

The Dutch Supreme Court which ruled on the Assen Case in June 1994 agreed with the lower courts in affirming that mental suffering can be grounds for euthanasia, but felt that, in the absence of physical illness, a psychiatric consultant should have actually seen the patient.

Since it felt that, in all other regards, the psychiatrist had behaved responsibly, it imposed no punishment. Since the consultation can easily be obtained from a sympathetic colleague, it offers the patient little protection. The case was seen as a triumph by euthanasia advocates since it legally established mental suffering as a basis for euthanasia.

Over the past two decades, the Netherlands has moved from assisted suicide to euthanasia, from euthanasia for the terminally ill to euthanasia for the chronically ill, from euthanasia for physical illness to euthanasia for psychological distress and from voluntary euthanasia to nonvoluntary and involuntary euthanasia.

Once the Dutch accepted assisted suicide, it was not possible, legally or morally, to deny more active medical help, i.e. euthanasia to those who could not effect their own deaths. Nor could they 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 has been justified as necessitated by the need to make decisions for patients not competent to choose for themselves. 
That it is often the doctor, and not the patient, who determines the choice for death, was underlined by the documentation of "involuntary euthanasia" in the Remmelink report - the Dutch Government's commissioned study of the problem.

"Involuntary euthanasia" is a term that disturbs the Dutch. The Dutch define euthanasia as the ending of the life of one person by another at the first person's request. If life is ended without request they do not consider it to be euthanasia. The Remmelink report uses the equally troubling expression "termination of the patient without explicit request" to refer to euthanasia performed without consent on competent, partially competent, and incompetent patients.

The report revealed that in over 1,000 cases, of the 130,000 deaths in the Netherlands each year, physicians admitted they actively caused or hastened death without any request from the patient.

In about 25,000 cases, medical decisions were made at the end of life that might or were intended to end the life of the patient without consulting the patient. In nearly 20,000 of these cases, (about 80 percent), physicians gave the patient's impaired ability to communicate as their justification for not seeking consent. 

This left about 5,000 cases in which physicians made decisions that might, or were intended to, end the lives of competent patients without consulting them.

In 13% of these cases, physicians who did not communicate with competent patients, concerning decisions that might, or were intended to end their lives, gave as a reason for not doing so that they had previously had discussed the subject with the patient.

Ye,t it seems incomprehensible that a physician would terminate the life of a competent patient, on the basis of some prior discussion, without checking if the patient still felt the same way. 

A number of Dutch euthanasia advocates have admitted that practicing euthanasia with legal sanction has encouraged doctors to feel that they can make life or death decisions, without consulting patients. Many advocates privately defend the need for doctors to end the lives of competent patients, without discussion with them.

An attorney, who represents the Dutch Voluntary Euthanasia Society, gave me, as an example, a case in which a doctor had terminated the life of a nun 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. He did not argue when I asked why she should not have been permitted to die in the way she wanted.

Even when the patient requests or consents to euthanasia, in cases presented to me in the Netherlands, and in cases I have reviewed in this country, assisted suicide and euthanasia were usually the result of an interaction in which the needs and character of family, friends, and doctor, play as big as and often a bigger role than those of the patient.

In a study of euthanasia done in Dutch hospitals, doctors and nurses reported that more requests for euthanasia came from families than from patients themselves. The investigator concluded that the families, the doctors, and the nurses were involved in pressuring patients to request euthanasia.

A Dutch medical journal noted an example of a wife who no longer wished to care for her sick husband: she 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.

The Remmelink report revealed that more than half of Dutch physicians considered it appropriate to introduce the subject of euthanasia to their patients. Virtually all the medical advocates of euthanasia, that I spoke to, in the Netherlands, saw this as enabling the patient to consider an option that he or she may have felt inhibited about bringing up rather than a form of coercion.

They seemed not to recognize that the doctor was also telling the patient that his or her life was not worth living, a message that would have a powerful effect on the patient's outlook and decision. 

The Dutch experience illustrates how social sanction promotes a culture that transforms suicide into assisted suicide and euthanasia and encourages patients and doctors to see assisted suicide and euthanasia-intended as an unfortunate necessity in exceptional cases-as almost a routine way of dealing with serious or terminal illness.

Pressure for improved palliative care appears to have evaporated in the Netherlands. Discussion of care for the terminally ill is dominated by how and when to extend assisted suicide and euthanasia to increasing groups of patients.

Given the inequities in our own health care system and the inadequacies of our care of those who are terminally ill, palliative care would be an even more likely casualty of euthanasia in this country. Euthanasia will become a way for all of us to ignore the genuine needs of terminally ill people.

The public has the illusion that legalizing assisted suicide and euthanasia will give them greater autonomy. If the Dutch experience teaches us anything it is that the reverse is true.

In practice it is still the doctor who decides whether to perform euthanasia. He can suggest it, not give patients obvious alternatives, ignore patients' ambivalence, and even put to death patients who have not requested it. Euthanasia enhances the power and control of doctors, not patients.

People assume that the doctor encouraging or supporting assisted suicide is making as objective a judgment as a radiologist reading an x-ray. The decisive role of the physician's needs and values in the decision for euthanasia are not apparent to them.

Virtually every guideline set up by the Dutch to regulate euthanasia has been modified or violated with impunity. Despite their best efforts, the Dutch have been able to get only 60 percent of their doctors to report their euthanasia cases (and there is reason from the Remmelink Report to question whether all of them are reporting truthfully).

Since following the legal guidelines would free from the risk of prosecution the 40 percent of Dutch doctors who admit to not reporting their cases and the 20 percent who say that under no circumstances will they do so, it is a reasonable assumption that these doctors are not following the guidelines.

The cases presented to me and to Dr. Carlos Gomez bear this out. Dr. Gomez and I went to the Netherlands at different times, and with totally different perspectives, since he is a palliative care specialist and I am a psychiatrist.

Yet, after hearing detailed cases of euthanasia presented by Dutch physicians, we independently came to the same conclusion: that it is not possible to sanction and regulate euthanasia within any prescribed guidelines.

A supervisory system, intended to protect patients, would require an ombudsman to look at the overall situation, including the family, the patient, the doctor, and above all, the interaction among them, prior to the performance of assisted suicide or euthanasia. This would involve an intrusion into the relationship between patient and doctor that most patients would not want and most doctors would not accept.

Without such intrusion before the fact, there is no law or set of guidelines that can protect patients. After euthanasia has been performed, since only the patient and the doctor may know the actual facts of the case, and since only the doctor is alive to relate them, any medical, legal, or interdisciplinary review committee will, as in the Netherlands, only know what the doctor chooses to tell them.

Legal sanction creates a permissive atmosphere that seems to foster not taking the guidelines too seriously. The notion that those American doctors - who are admittedly breaking some serious laws, in now assisting in a suicide - would follow guidelines if assisted suicide were legalized, is not borne out by the Dutch experience; nor is it likely, given the failure of American practitioners of assisted suicide to follow elementary safeguards, in cases they have published.

Patients who request euthanasia, are usually asking in the strongest way they know, for mental and physical relief from suffering. When that request is made to a caring, sensitive, and knowledgeable physician who can address their fear, relieve their suffering, and assure them that he or she will remain with them to the end, most patients no longer want to die and are grateful for the time remaining to them.

Advances in our knowledge of palliative care in the past twenty years make clear that humane care for the terminally ill does not require us to legalize assisted suicide and euthanasia. Study has shown that the more physicians know, about palliative care, the less apt they are to favor legalizing assisted suicide and euthanasia. Our challenge is to bring that knowledge and that care to all patients who are terminally ill.

Our success in meeting the challenge of providing palliative care for those who are terminally ill will do much to preserve our social humanity. If we do not provide such care, legalization of assisted suicide and euthanasia will become the simplistic answer to the problems of dying. If legalization prevails, we will lose more lives to suicide (although we will call the deaths by a different name) than can be saved by the efforts of the American Suicide Foundation and those of all the other institutions working to prevent suicide in this country.

The tragedy that will befall depressed suicidal patients will be matched by what will happen to terminally ill people, particularly older poor people. Assisted suicide and euthanasia will become routine ways of dealing with serious and terminal illness, just as they have in the Netherlands. Those without means will be under particular pressure to accept the euthanasia option. In the process, palliative care will be undercut for everyone.

Euthanasia advocates have come to see suicide as a cure for disease and a way of appropriating death's power over the human capacity for control. They have detoured what could be a constructive effort to manage the final phase of life in more varied and individualistic ways.

Our social policy must be based on a larger and more positive concern for people who are terminally ill. It must reflect an expansive determination to relieve their physical pain, to discover the nature of their fears, and to diminish suffering by providing meaningful reassurance of the life that has been lived and is still going on.

References
1. H. Hendin, and G. Klerman, "Physician-Assisted Suicide: The Dangers of Legalization," American Journal of Psychiatry, 1993 
2. H. Hendin, Suicide in America, New York: W. W. Norton, 1995. 
3. Ibid. 
4. L. Thomas, "Dying as Failure?," American Political Science Review, 1984,444:1-4. 
5. D. Hendin, Death as a Fact of Life, New York: W.W. Norton, 1973, citing H. Feifel "Physicians Consider Death," unpublished manuscript presented at 1967 meeting of the American Psychological Association. 
6. H. Hendin, "Selling Death and Dignity," Hastings Center Report, 
7. An Appointment with Death, K.A. Productions, 1993. 
8. H. Hendin, "Assisted Suicide, Euthanasia and Suicide Prevention: The Implications of the Dutch Experience," Suicide and Life-Threatening Behavior, 1995; 25:193-203. 
9. H. Hendin, "Seduced by Death: Doctors, Patients and the Dutch Cure," Issues in Law and Medicine, 1994; 10:123-168. 
10. P.J. van Der Maas, W. van Delden, and L. Pijnenborg, Euthanasia and Other Medical Decisions Concerning the End of Life, New York: Elsevier, 1992. 
11. H.W. Hilhorst, Euthanasie in het Ziekenhuis [Euthanasia in the Hospital,] Lochem: De Tijdstroom, 1983. 
12. H. Ten Have and G. Kimsma, Geneeskunde: Tussen Droom en Drama [Medical Science: Between Dream and Drama,] Kampen: R.O.K. Agora, 1985, pp. 83-84. 
13. C. Gomez, Regulating Death: Euthanasia and the Case of the Netherlands, New York: The Free Press, 1991. 
14. R.K. Portenoy, N. Coyle, K.M. Kash, F. Brescia, C. Scanlon, D. O'Hare, R.I. Misbin, J. Holland, K.M. Foley, "Determinants of the Willingness to Endorse Assisted Suicide: A Survey of Physicians, Nurses and Social Workers," unpublished manuscript, 1995. 
15. H. Hendin, Seduced by Death:Doctors, Patients, and the Dutch Cure, New York, W. W. Norton, 1996 (October).

Source http://www.house.gov/judiciary/2169.htm