The Experience of Assisted Suicide in The Netherlands and in the State of Oregon in USA: What can we learn?

Michael McCabe
Issue 9, April 2003

On April 9, 2003, the New Zealand Parliament was due to debate Peter Brown's Private Member's Bill entitled "Death with Dignity." The bill's stated purpose is: to "allow persons who are terminally and/or incurably ill the opportunity of requesting assistance from a medically qualified person to end their lives in a humane and dignified way and to provide for that to occur after medical confirmation, a psychiatric assessment, counselling, and personal reflection."

There are very real dangers to society associated with the legalization of assisted suicide. This is evidenced by the fact that advocates for assisted suicide consistently highlight the need for clear safeguards to prevent potential abuse. The New Zealand Voluntary Euthanasia Society, for example, states that, "The Society's policy is that euthanasia would be resorted to only at the express wish of the individual, in carefully defined circumstances and with all possible safeguards against abuse. (Parliament would have to be satisfied as to safeguards)."

The proposed safeguards in the "Death With Dignity" bill mirror legislation in the Netherlands and the State of Oregon, United States of America where assisted suicide is legal. It is therefore insightful to review the practice of assisted suicide in these two places. Such a review clearly highlights the fact that acceptance of assisted suicide in principle has inevitably led to abuse of apparently strict criteria in practice.

The Netherlands Experience

While assisted suicide and euthanasia have been commonly practiced for some time in the Netherlands they have only been formally legalized since 2002. There are strict criteria for euthanasia and assisted suicide:

An explicit, voluntary and repeated request from the patient.
The patient is experiencing unbearable suffering. Either psychic [emotional] or 'physical' pain can be given as a cause of suffering. Terminal illness has never been a requirement for assisted suicide in the Netherlands.
There is a lack of suitable alternatives, that is, all other medical options have been exhausted.
There is consultation with at least one other colleague by the treating physician.
The death of the patient by assisted suicide must be reported to the coroner.

The 1992 Remmelink Report is an official and important source for understanding the practice of assisted suicide and euthanasia in reality because it provides a contextual and empirical analysis of this practice in the Netherlands. In their analyses of medical decisions concerning the end of life the authors clearly show that people are euthanised without their consent despite these criteria:

"In addition to euthanasia and assisted suicide there are also cases in which life is terminated without explicit request of the patient. Our best estimate is that physicians prescribe, supply or administer a drug with the explicit purpose of hastening the end of life without explicit request of the patient in somewhat more than one thousand cases annually [0.8% of all deaths]. In more than half of these cases the decision had been discussed with the patient or the patient had at some time indicated his wish to have the end of life hastened. In several hundreds of cases there was neither discussion with the patient nor a known wish for hastening the end of life." [Remmelink Report, 1992:194.]

Close reading of the Remmelink Report and later studies show that patients in this category were the medically incompetent who were unable to make their wishes known, including a high proportion of women who, as in New Zealand, tend to live longer. While this is very distressing in itself, of equal concern is the fact that in several of these cases of involuntary euthanasia no discussion was held at all prior to the action of killing the patient.

"Virtually all cases involved severely ill or terminal patients who clearly suffered seriously and were no longer able to make their wishes known. In several cases there had been no consultation with others (family or relatives, colleagues). In a small number of cases there was no consultation while this would have been possible. There was also a small number of cases where life had been shortened by more than half a year and, in the opinion of the physician, the patient clearly had not yet reached the terminal stage of his illness." [Remmelink Report, 1992: 194.]

In 1995 a further study by the same authors of the Remmelink Report revealed that one in five cases of assisted suicide occurred without the patient's explicit request and in 17% of such cases alternative treatment was clearly available. Many violations of the criteria were evident from these two studies, notable among them, the under-reporting of assisted suicide by physicians. While estimates are variously given between 30-60%, there is clear agreement that under-reporting of assisted suicide and euthanasia is a reality. Regulation has proved to be difficult if not impossible and any force the law may have is in reality muted because the regulations or criteria are not honoured in practice.

Assisted suicide or euthanasia is frequently promoted as giving patients more choice in dying but the Netherlands experience has shown that it gives doctors even more power. As physicians Kathleen Foley and Herbert Hendin note, "...legal sanction empowers physicians, not patients. Physicians often suggest death, which compromises the voluntariness of the process; do not present obvious alternatives; ignore patient ambivalence; and even end the lives of patients who have not requested them to do so. Practicing euthanasia appears to encourage physicians to think they know best who should live and who should die, an attitude that leads them to make such decisions without consulting patients." [Foley and Hendin, 2002:10.]

The practice of assisted suicide has also blocked what can be termed basic palliative care and has led to the underdevelopment of hospice in the Netherlands. Zbigniew Zylicz, one of the few palliative care physicians in the Netherlands, writes about the poor understanding of palliative care, "General practitioners in the Netherlands are well trained in most aspects of family medicine...but these physicians are generalists with only a superficial knowledge of palliative medicine. Their formal training in this field lasts no more than several hours." While six academic centers for the development of palliative care were set up in 1998, an "unintended consequence of this effort was the marginalization of small, poorly funded hospices." [Zylicz, in Foley and Hendin 2002:123.]

While there has been considerable development in palliative medicine in recent decades, and while there is increased understanding of pain and symptom management and the psychological and spiritual needs of the dying, these resources are simply not available in any coherent manner in the Netherlands. Inevitably this lack of knowledge impacts on the quality of care given by physicians, as Zylicz, somewhat poignantly, notes:

"Many physicians who choose general practice or nursing home medicine in the Netherlands begin as idealists who believe in the possibilities of care. They believe that there are always ways, if not to cure, then at least to comfort and to care. Modern medicine often makes this impossible for young physicians. They do not have enough opportunity to develop caring attitudes. The caseload in general practice is very high. Instead of the anticipatory, proactive, and preventive medicine that is the key to palliative care, they are forced to react to critical situations that could have been avoided. This means that at the end of the day knowledge that should be available is not and problems that are soluble appear not to be so. If you add to this patient's freedom of choice and the easy option of euthanasia, the choice is often quick and inevitable." [Zylicz, 142-143.]

The reality of the practice of assisted suicide and euthanasia in the Netherlands illustrates the logical inconsistencies involved in allowing for euthanasia in practice. The Netherlands is frequently cited as an example that there would be no abuse providing there are strict guidelines and criteria and safeguards in any legislation. This simply has not been born out in reality.

The Oregon experience

In 1997 the Supreme Court of the United States of America rejected the claim that there was a constitutional right to assisted suicide. This decision effectively returned the debate over legalization of assisted suicide to individual states. In recent years more than twelve states have rejected assisted suicide and have actually strengthened laws against assisted suicide.

The State of Oregon is the exception. Under an Oregon law, that took effect in October 1997, doctors were given the authority to provide [but not administer] a lethal prescription to a terminally ill patient as long as two physicians agreed that the patient had six months or less to live, had voluntarily chosen to die and had the mental capacity to make health related decisions. [United States of America Attorney General, John Ashcroft, has challenged this law and, if successful, will prohibit the use of drugs for assisted suicide.]

Unlike the practice in the Netherlands, the guiding belief for assisted suicide in Oregon was not pain and suffering but patient autonomy and choice. In many respects the laws governing the practice of assisted suicide in Oregon encapsulate the strongest arguments in favour of legalisation of assisted suicide, namely, compassion for the suffering patient, respect for the autonomy of the patient, and, the belief that suicide can be a rational act on the part of the patient. [Foley and Hendin, 2002:8]. Consequently it is also insightful to look at the hiatus between this rationale and the practice of assisted suicide in Oregon State.

A fundamental difficulty in establishing just how assisted suicide works in practice in Oregon is that the information collected by the state is not open to public scrutiny and neither is there provision for independent evaluation of the data that has been collected. In the five years since the legalization of assisted suicide 129 people from Oregon have ended their lives in this manner. Interestingly, these people are described as well insured, Caucasian, and well educated, compared to other Oregonians who died between 1998 and 2002. Common reasons given for people wanting to end their lives included "losing autonomy", "losing control of bodily functions", and, "a loss of independence."

Under the Oregon law, "when a terminally ill patient makes a request for assisted suicide, physicians are required to point out that palliative care and hospice care are feasible alternatives. They are not required, however, to be knowledgeable about how to relieve either physical or emotional suffering in terminally ill patients. There is no requirement in Oregon for courses in pain management, palliative care, or the evaluation of a suicidal patient for physicians wishing to practice assisted suicide or a certifying exam for physicians who believe they are already qualified." Clearly, without such knowledge the ability to present feasible alternatives is limited. [Foley and Hendin 2002: 145.]

A major cause of suffering for the terminally ill is depression. Estimates put the prevalence of depression in cancer patients alone as being between 20-40%. Such prevalence increases with higher levels of disability, pain, and progression of illness. The presence of progressive disease can both mask depression and simultaneously complicate the diagnosis of depression. Depression, in turn, can mask the spiritual, cultural, and existential causes of suffering for the terminally ill and their family. [McCabe, in Portenoy and Bruera, 1997:283.] That is why medical illness has been estimated as an important factor in 70% of all suicides over the age of 60. Most suicides and most of those who respond to terminal illness with a desire to hasten death are patients suffering from depression. [Foley and Hendin, 2002:150.]

Although a psychiatric evaluation is the standard of care for suicidal patients it is noteworthy that, in Oregon, in 2001, only three of the 21 patients who committed assisted suicide were referred to psychiatrists. Interestingly, in other states in the United States of America such practice is called malpractice because it confirms a patient's belief that their life is burdensome and is not worth living. Without a proper psychiatric evaluation it is not possible to assess if a patient has impaired judgement and is capable of making an informed decision as required by Oregon law.

Another difficulty with the Oregon legislation is that there is no provision for the selection of an independent physician to confirm the "diagnosis, prognosis, and voluntariness of the [patient's] choice." The Netherlands experience underscores the fact that such "confirmation" is more often than not likely to be given by a colleague of the primary physician and that his or her evaluation is very "likely to be pro forma." Such a reality places an additional obstacle to any transparency in the system of reporting by physicians to the Netherlands coroner or to the Oregon Health Division.

Conclusion

Although official reports on assisted suicide and euthanasia in the Netherlands and Oregon state are criticized for their lack of transparency, and for hiding more than they reveal, they are valuable nevertheless because they clearly highlight the inconsistencies that occur once physician-assisted suicide is legalized. Inevitably, over time, these inconsistencies compound and lead to even less transparency and greater silence. The so-called criteria for assisted suicide which are intended to act as a "clear safeguard" against abuse are clearly ineffective. Because the "safeguards" do not work they actually expose the terminally and incurably ill to added isolation and increase their vulnerability.

It is naïve to enact legislation in New Zealand, with similar "safeguards", and think that our experience of assisted suicide would be any different.

References:

K. Foley and H. Hendin, eds., The Case Against Assisted Suicide For the Right to End-of-Life Care. Baltimore: The Johns Hopkins University Press, 2002.

R. Portenoy and E. Bruera, eds. Topics in Palliative Care. Volume 1. New York: Oxford University Press, 1997.

P J van der Maas, et. Al., Euthanasia and other Medical Decisions Concerning the End of Life [The Remmelink Report] Amsterdam: Elsevier Science Publishers, 1992.

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Rev Michael McCabe, PhD
Director
The Nathaniel Report