Euthanasia and assisted suicide (EAS) of psychiatric patients in the Netherlands

Although the original debates over legalization of assisted death (euthanasia or assisted suicide, or EAS) focused on the terminally ill, in some countries the practice has expanded to non-terminally ill patients, such as patients suffering from psychiatric disorders.

We recently studied 66 cases of psychiatric EAS from the Netherlands.  We examined the patients’ various psychiatric, medical, and social conditions; their histories (including treatment history, suicide attempts, treatment refusals); the physicians’ evaluation of the patients; and how the euthanasia review committees retrospectively reviewed the cases.

The study provides a relatively fine-grained, individual level picture of what is happening when patients suffering from psychiatric disorders are euthanised or given lethal doses of medications for ingestion under the Dutch system.  This is in contrast to the usual large scale population surveys connecting death registry data to physician self-reports that cannot tell us much about the practice of EAS at the individual level.

You can read the article here.  Paul Appelbaum has written an excellent editorial on the study.  You can also read coverage by New York Times and Reuters.  This issue is very much a live topic in Canada because their Parliament is currently debating how to regulate physician assisted death.  You can read a Canadian perspective on our study here.

What are the main findings?  You can of course read the paper for the numbers and the methods. But here I draw out some implications and themes.

My first surprise in doing this study was that despite the fact that the Dutch euthanasia committees (RTE) have been making anonymized case summaries of EAS patients public for years, no one (as far as we can tell) has published an in depth analysis using those documents.  I think that is significant.

The biggest surprise was that people who received EAS didn’t match the usual picture of the paradigm case of psychiatric EAS.  The debates over psychiatric EAS tend to focus on a particular picture: A patient with long history of severe treatment resistant depression who, after insightful assessment of her situation, exercises her autonomy to choose death and she receives euthanasia surrounded by a family who supports her.

But the reality is a bit more complicated.

First, there is a wide range of psychiatric conditions represented. 26% had some form of psychosis, for instance—some of them lifelong schizophrenia. Others had cognitive impairment.  There were cases of autism spectrum disorder, eating disorders, as well as an otherwise healthy woman who received EAS from ‘prolonged grief’ over her husband’s death a year prior to her EAS.

Second, in a majority of cases, what was notable in these patients was not their psychiatric conditions per se (for a psychiatrist, the patients will seem familiar) but that they tended to be persons who have reduced ability to cope—i.e., people with personality difficulties, social isolation, or feelings of loneliness.  One disappointing aspect of the reports we read was that they generally did not provide clear explanations about why a request for EAS by such patients is a rational, autonomous act rather than an act driven by psychopathology.  That is, the distinction is repeatedly invoked, but there is no further explanation than the pronouncement of the physicians.  For example, most patients had suicide attempt histories and some even attempted suicide during the clinical episode that led to their EAS. I had expected to see the physicians’ explanations for distinguishing between ‘suicidal due to a psychiatric condition’ and more ‘rational’ suicide to be more substantial than was contained in the reports.

Third, another notable finding is that the Dutch practice of psychiatric EAS seems to be more liberal than the practice Guidelines promulgated by the main Dutch psychiatric organization (which is in fact rather supportive of the practice).  For example, the actual practice (with approval by the review committee) does not have to involve any truly independent psychiatric input. But the psychiatric society’s Guidelines recommend not only an independent psychiatrist in each case but a subspecialist who is an expert on the disorder (for example, an eating disorder specialist).  That is an interesting discrepancy between the views of the Dutch psychiatric profession and how the laws are implemented.

In fact, given that the Dutch euthanasia committees generally do not have psychiatrists (or at least not until recently), it appears that the following is possible (and indeed occurs): a psychiatric patient could be euthanized without any independent expert input or oversight, and then the official review of the completed EAS is conducted with no psychiatric expert input.  That is a lot of trust in the judgment of the treating psychiatrist, or even a general practitioner.

Fourth, the Dutch system relies tremendously on physician judgment to implement fairly broad and vague rules and this is very problematic for psychiatric cases, even when experts are involved.

Now, for most terminal illnesses, we can be fairly sure what the eventual outcome for the patient is.  There’s not a lot of physician discretion involved in most situations.

But for psychiatric conditions, physicians must make tricky clinical determinations (for example, when patients refuse psychiatric treatment and instead want EAS, how should the doctor proceed?) without the help of a robust evidence base.  There is no evidence base to operationalize “unbearable suffering.” There are no prospective studies of decision-making capacity in persons seeking EAS for psychiatric reasons. And the prognosis of patients labeled as ‘treatment-resistant depression’ varies considerably, depending on the population and the kind of treatments they receive. We provide references to these points in the paper.

Thus, we found that many patients had been previously denied EAS, and even when it is granted, not infrequently there is disagreement among physicians as to whether the legal criteria (“unbearable suffering,” “hopeless” prospects, “voluntary and well-considered request,” among others) are met for EAS.  Most of the time the disagreement is not resolved before the person receives EAS–as that is not required by law (this point is presumed to be so well understood that the euthanasia review committees usually do not even comment on the disagreement). And those who are refused EAS eventually find doctors and consultants who see things differently–usually at a mobile End of Life Clinic whose sole purpose is to provide EAS.

Finally, we note in the paper–as does the editorialist Paul Appelbaum–various limitations to our study. Primarily, they are related to the nature of the source documents: case summaries drafted by the euthanasia review committees using the written reports (and rarely oral testimony) of the physicians involved.  They are not detailed medical notes, and they are certainly a form of ‘self-report’ since the physicians are describing how they complied with the law.  The limitations of such source documents should be obvious. Two observations are worth making on this. First, even with such limitations, it was not difficult to find rather concerning features of the cases (a testament to the integrity and transparency of the Dutch euthanasia committee). So despite the limitations, our study provides the most systematic and rich description of the practice of psychiatric EAS to date.  Second, to the extent that one might be tempted to discount our findings, one should realize the implication of such an assertion: despite decades of this controversial practice, there seems to be so little data to reassure us that all is well.

 

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Waiving the requirement for informed consent?

When is it permissible to waive or alter the usual rules of informed consent in human subjects research?  It is a testament to the success of the modern system of regulating research with humans that such a question will seem odd, even disturbing, to many.  Isn’t informed consent always necessary?

Actually, our current regulations do allow waivers and alterations of informed consent but it is important to know what this means.  It means waiver or alteration of the specific regulatory requirements, rather than of the general ethical concept itself.  And such waivers or alterations must meet strict criteria. The regulations state that:

An IRB may approve a consent procedure which does not include, or which alters, some or all of the elements of informed consent set forth in this section, or waive the requirements to obtain informed consent provided the IRB finds and documents that:

 (1) The research involves no more than minimal risk to the subjects;

 (2) The waiver or alteration will not adversely affect the rights and welfare of the subjects;

 (3) The research could not practicably be carried out without the waiver or alteration; and

 (4) Whenever appropriate, the subjects will be provided with additional pertinent information after participation.

Until recently, there has been relatively little discussion about how to apply these criteria. Perhaps this is because most of the time the waivers were used for medical records research which most people do not either know about or would agree to anyway. But with the increasing interest in comparative effectiveness research, there has been a steady rise in calls for allowing waivers in settings that have not usually seen such waivers, namely, randomized clinical trials.

My colleague Frank Miller and I have been somewhat skeptical of this trend.  We just published a new paper on this topic.  In it, we use the principle of respect for persons as a way interpreting these criteria for waiver or alteration of informed consent.