Psychiatric Euthanasia: Too Few To Matter? Not so fast

Since the publication of our study on 66 cases of psychiatric euthanasia or assisted suicide (EAS) in the Netherlands, I have heard comments from people that the issue is of minor consequence given how few cases there are.  The relative numbers are indeed low. In the Netherlands in 2014, there were a total of about 5300 EAS cases, of which psychiatric cases were 41.

Bracketing for now arguments about the importance of each individual life regardless of number, it may be useful to consider this issue from a purely quantitative standpoint. This will require some speculations about numbers but I will try to stay with what is known as much as possible, focusing on the U.S.

Using per capita rates (rather than mortality rates) as a rough guide, there would be about 950 psychiatric EAS cases per year in the US using the current Dutch rates (US is 19x more populous; reporting rate in the Netherlands is about 80% or lower).  For a large country like US, that is a small number but it does not seem inconsequential that nearly a 1000 persons per year would receive EAS for psychiatric reasons in the US.

But the problem with dismissing psychiatric EAS based on current low numbers in the Netherlands is that it ignores three things: one, the tremendous potential for growth in numbers over the years; two, the large significance–quantitatively–of each false positive in terms of person-years lost; and three, the high likelihood of false positives given the broad and vague set of criteria for eligibility that are usually used (criteria which may be much less likely to be problematic in the terminal illness setting but extremely problematic to operationalize for psychiatric disorders–that is an issue for another discussion; here I focus on the numbers only).

In the US, there are almost 43,000 completed suicides per year.  For each completed suicide, there are about 25 suicide attempts.  So there are about 1 million suicide attempts per year. Over 90% of completed suicides are in persons with some serious psychiatric disorder. Most people who request psychiatric EAS have attempted suicide in the past (often multiple times)–this does not directly  help us in estimating how many people who attempt suicide might seek EAS, but we can make a rough, conservative assumption that about 1 in 10 persons who attempt suicide  would attempt to make use of legalized EAS.

I want to make clear that I do NOT mean that in fact there will immediately be that many people asking for EAS if it is legalized.  Because both the medical culture (physicians feeling uncomfortable with the practice–as in the Netherlands where 2/3 of MDs cannot conceive of aiding in psychiatric EAS) and lay culture (only 28% of the Dutch public approve of psychiatric EAS even in the paradigmatic case of refractory depression) are opposed to psychiatric EAS, even legalization will not immediately lead to high numbers. But in a country with a broken mental health care system such as ours, we probably should not underestimate the potential for the system to flow toward the path of least resistance.

Once the practice becomes established and accepted, there could be an increasing number of persons who apply, as is happening in Belgium and the Netherlands now. This number, even conservatively measured, could reach at least 100,000 persons per year in the U.S. based on above assumptions (i.e., 10% of all suicide attempts per year).

In addition, there will be people who desire to die who would not have attempted suicide. This number is impossible to guess but if you speak with any experienced psychiatrist, suicidal ideation (without attempts) in persons with serious psychiatric conditions is common.  I would imagine that given the large number of such patients, even if a tiny fraction sought EAS, the absolute numbers would be quite sizable.  But to be conservative, we will ignore this group since it is very difficult to estimate.

Thus, it is not unreasonable to assume that eventually the number of person who may ask for psychiatric EAS in the US, were it legalized, would over the years reach into six figures per year.

Only a minority of such patients would likely meet criteria for EAS, even under a liberal regime.  A longer discussion is necessary to argue this point but there are a variety of reasons to think this:  many patients change their minds, some may not be competent to make decisions, and most commonly many will, with support and treatment over time, be able to cope better which may in turn lead to improvements in their symptoms.  Still, a sizable minority might qualify for EAS.  Suppose 20% would truly meet criteria, and 80% would not–assuming perfect application of eligibility criteria.

The application of the criteria, if similar to the ones in the Netherlands, Belgium, and the ones proposed by the recent Canadian Parliament special committee, will not be easy in the psychiatric setting (‘grievous and irremediable’ condition, competent as measured by current medical practice, etc).  The criteria from the Netherlands are:

1. The attending physician has come to the conviction that the
request from the patient is voluntary and well considered.
2. The attending physician has come to the conviction that the
suffering of the patient is unbearable and without prospect of
improvement.
3. The physician has informed the patient about his or her
situation and prospects.
4. There are no more reasonable alternatives for the patient.
5. The physician has consulted at least one other, independent
physician.
6. The physician has terminated the patient’s life or provided
assistance with suicide with due medical care and attention.

I have bolded the key substantive criteria having to do with competent decision-making, assessment of ‘unbearable suffering,’ and medical futility.  In case you are wondering if these broad criteria are further specified or operationalized to guide the physicians, the answer is no.  This is why there are disagreements in judgment.

We can explore what would happen if physicians’ judgments are 90% sensitive (pick of 9 of 10 cases of truly eligible persons) and 90% specific (eliminate 9 of 10 persons who are truly not eligible) in identifying persons who are eligible for EAS. Based on my experience conducting capacity evaluations and conducting several studies on how physicians make capacity determinations, this is a fairly optimistic estimate of physician accuracy.  Also, we already know that even in completed psychiatric EAS cases in the Netherlands, 90% reliability (i.e., agreement among physicians) is not achieved. Thus, the idea that the overall accuracy (sensitivity and specificity) can be 90% is probably too optimistic. Without reliability, we can’t have validity.  But let’s press on.

Under these assumptions, there will be about a 31% false positive rate.  As applied to our sample of 100,000 requestors, there will be 26,000 persons found to be eligible by physician judgment. But of those, 8000 will be false positives and would be incorrectly provided with EAS.

If we use instead a more realistic estimate of physician judgment accuracy–say, 80% for both, or even lower–we get the following results: if a physician says a request for psychiatric EAS meets all criteria, the chances that the person does not meet all criteria will be about 50%, i.e., a false positive rate of 50%.  For our sample of 100,000 requestors, this will result in 32,000 persons being judged to be eligible, of whom 16,000 per year would not be in fact eligible (false positives).  This would translate into about 320,000 person-years lost, using a conservative mean of 20 years lost per false positive.

For those who are skeptical of my 100,000 estimate of potential requestors of psychiatric EAS, you can instead use a lower estimate, say, of 1% of suicide attempters requesting EAS. Using that assumption, we have:

  • 3200 persons per year who would receive psychiatric EAS in US
  • 1600 of whom are false positives
  • Loss of 32,000 person-years due to false positives

Not an insignificant public health impact.

 

 

 

 

 

 

 

 

 

 

 

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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.