Boudewijn Chabot: an unlikely critic of Dutch euthanasia practice?

Dr. Boudewijn Chabot is well-known as the doctor in the famous Dutch court case that effectively made psychiatric euthanasia legally permissible in that country.  He recently published an opinion piece which is highly critical of the recent trends in Dutch euthanasia practice involving persons with dementia and chronic psychiatric illnesses. You can find an English translation here.

In his article, Dr. Chabot targets several entities in making the main charge that the Dutch euthanasia laws which require certain conditions be met (such as unbearable suffering that has no prospect of improvement) are no longer functioning as intended due to toothless enforcement.

First, he is highly critical of the End of Life Clinic which now provides the majority of psychiatric euthanasias in that country.  This clinic’s mission is to provide euthanasia for those patients whose requests have been declined by their doctors.  It is a system of mobile clinics, affiliated with the country’s main right to die organization.

Second, he criticizes the Dutch euthanasia review committees for essentially rubber stamping approvals.

Third, he criticizes the researchers who conduct the federally mandated evaluation of the law’s impact every five years.  He essentially accuses them of whitewashing unacceptable practices, while claiming to uphold the criteria in the law.

“What is astonishing is that in the third evaluation of the law, the researchers still keep up the smoke screen around ‘unbearable suffering without prospect of improvement’.”

He ends with: “I don’t see how we can get the genie back in the bottle. It would already mean a lot if we’d acknowledge he’s out.”

What makes this essay unusual is that it is by a prominent Dutch figure in the history of the country’s development of euthanasia practice. Of course, similar concerns have been raised by numerous external critics.  (See for example, an article my colleague Trudo Lemmens and I wrote, raising concerns about the attempts to legalize psychiatric euthanasia in Canada.)

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Euthanasia on demand for ‘completed life’?

The NL Times reports on a proposal by the current Dutch government:

“The Dutch government wants to adjust the Euthanasia Act so that people who aren’t sick, but feel that their life is completed, can end their lives with assisted suicide. This will only be allowed under “strict and rigorous criteria”, the government wrote to parliament. The majority of parliamentarians support the plan.”

There is an op-ed in today’s Chicago Tribune by Willem Lemmens (Belgian philosopher), Art Caplan (American bioethicist), and Trudo Lemmens (Canadian lawyer-bioethicist) discussing what such a proposal signals, and the potential consequences of implementing euthanasia on demand.

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.

 

 

 

 

 

 

 

 

 

 

 

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.

 

Unbearable suffering

A physician in the Netherlands must be convinced that a patient is experiencing “unbearable suffering” if the patient is to be eligible for euthanasia or assisted suicide.  Similar provision exists in Belgian law.

I am aware of only one comprehensive attempt to review this criterion, by Dees et al in 2010, published in Psycho-oncology.  They reviewed papers that addressed the issue of suffering in the context of request for assisted death, and found 55 papers; 20 were papers about definitions, and 35 were empirical studies (mostly qualitative studies of patients, relatives, and health professionals).

Some key quotes from their article:

“Compared with other legal requirements, unbearable suffering is difficult to assess.  Unbearable suffering has not yet been defined adequately.”  Note that this is written in 2010, and the Dutch law was made effective in 2002, preceded by decades of de facto legal practice with similar requirements.  Thus, the authors are pointing out that a practice has been in existence that allows medically assisted or induced death and one of the main criteria for allowing such a practice has not yet been defined adequately.

After their comprehensive review, the authors report that their research shows:  “No agreed upon definition of unbearable suffering in end-of-life situations materialized.”  A point they repeatedly emphasize in their results is that there is little overlap in the way suffering in the context of EAS request is understood among three groups: patients themselves, their relatives, and physicians.  In fact, the results of their review lead them to ask:

“how do treating physicians come to an understanding of the severity of suffering in individual cases in the absence of an agreed-upon definition?”(p 349)

“… it is obvious that further research into suffering in the context of requests for EAS [euthanasia and assisted suicide] is necessary.”(p 350)

The authors propose their own definition of US in context of EAS:

“Unbearable suffering in the context of a request for EAS is a profoundly personal experience of an actual or perceived impending threat to the integrity or life of the person, which has a significant duration and a central place in the person’s mind.”

Is this an improvement?  It reaffirms the subjective component repeatedly emphasized by the euthanasia review committees.  It incorporates the concept of integrity that Cassell has used to explain the nature of suffering.  But it does not help much in helping a physician decide (and for policy purposes) what is unbearable suffering.  Is unbearability wholly subjective?

The same authors also conducted a qualitative study themselves, interviewing 31 persons who had requested EAS.

“Without hopelessness, there is no perception of unbearable suffering.”

People who state they suffer “continuously” are only those with psychiatric disorders.

They found predominance of existential (or spiritual, one might say) and ‘psycho-emotional’ themes as biggest contributors to patients’s perceptions of unbearable suffering.

One might speculate from the above that there are two types of people who request death due to “unbearable suffering.”  First, there may be those whose philosophical or worldview stance leads them to feel that their current life is not what they want.  The results above seem to indicate that this is a smaller group.  The more common type is the person who has a limited coping capacity for a variety of reasons–the two most likely being some type of psychiatric disorder and the lack of social support (or lack of perceived social support).  Is it possible that the law has in mind the first group, but the people who are actually affected by the law is the second group?

To put it more starkly, the law may be designed to respect the robust libertarian (who feel strong enough to emphasize their independence from others) but ends up applying to the disenfranchised and lonely who would benefit from more connection and support from others.

 

God, mammon, and euthanasia

What distinguishes those countries that have legalized euthanasia/assisted suicide (the official terms used in the Netherlands) or assisted death/aid-in-dying (terms preferred by others; I use ‘EAD’ for euthanasia and assisted death as a compromise here) from those that have not?

The following countries have either had or currently have jurisdictions that have legalized euthanasia and assisted death (EAS):

  • The Netherlands
  • Belgium
  • Luxembourg
  • Colombia
  • Australia (briefly)
  • United States (in a few states)
  • Switzerland
  • Canada

Except for Colombia, the rest are wealthy Western countries. In fact, 7 of the 14 (50%) wealthiest Western countries (per capita wealth) have legalized assisted death at some point.  The 15th wealthiest Western nation (depending on the source) is UK, a country with a strong assisted death movement.

The remaining 7 of top 15 wealthiest Western countries have not legalized assisted death, and they consist of Germany (not surprising given its history), heavily Catholic countries (Ireland, Austria), and the Scandinavian countries (despite their secular, progressive reputation, surprisingly conservative on this issue).

The strong relationship between per capita wealth and permissive policies regarding assisted death is striking.

Many frame this issue as one between the religious and the non-religious. At least from a demographic perspective, this seems not to be the case. The proportion of a population who believe there is a God does not seem to correlate well with EAD legal status.  The following are proportion of persons who believe there is a God in the EAD legal countries (% saying yes to “You believe there is a God” in a 2010 Eurobarometer survey–so I’m limiting my examples below to countries with data from the survey):

  • The Netherlands 28%
  • Belgium 37%
  • Luxembourg 46%
  • Switzerland 44%

The following are some countries that have not legalized EAD and their proportion of population who believe there is a God:

  • Czech Republic 16%
  • Estonia 18%
  • France 27%
  • Sweden 18%
  • Norway 22%