Intolerable and hopeless (meaning without prospect of improvement) suffering is an eligibility criterion for euthanasia/assisted suicide in the Netherlands, Belgium, and Canada. Despite having been used as such a criterion for decades (at least in the Netherlands; shorter periods in other countries), it is still widely debated as to its meaning and applicability as an operational criterion.
One paper by Dr Lieve Thienpont and colleagues from Belgium has raised important issues regarding the criterion. In that paper, they report on a qualitative analysis of what one might call “testimonies of suffering” of over two dozen patients who requested euthanasia or physician-assisted suicide (EAS) based on psychiatric disorders.
One patient, a 52-year-old woman, is quoted:
…Moreover, the people around you cannot believe that you want to die, because you’re looking so good, so no one would allow you to die. So when I finally got the permission to die, that was a huge relief. [ … ] I have to admit that since my request to die was considered to be acceptable, I’m experiencing better moments and I’m also in doubt now. I’m still in therapy and there we discuss other available options.
The authors of the paper quote another patient — a 30-year-old woman — as an example of how a patient’s suffering is compounded by “friends, family and/or physicians neglecting or underestimating these struggles and suffering”, or “sweeping aside”(ignoring) the patient’s request for euthanasia:
Saying that someone is working, studying and experiencing a good home situation — and therefore asking what the problem is — is a commonplace platitude that undermines my readiness to open up, as you’ve noticed earlier. It’s a question that I can expect from non-therapists and which detracts from the fact that I suffer unbearably. Would that also mean that a cancer patient, who works and experiences a good home situation, can’t suffer unbearably? Work or study isn’t sufficient, as feeling at home in this world means so much more.
I think there are several things we can learn from these patients. But first some background: According to a previous paper by the same authors (Thienpont et al, BMJ Open 2015), these patients had been deemed to be suffering intolerably and also without prospect for improvement due to their conditions being treatment resistant. Thus, they met two of the crucial eligibility criteria for euthanasia in Belgium. In this paper, the authors reported that 16 percent of persons (8 out of 48) granted approval for EAS changed their minds, like the first patient described above.
The first notable point is that even though these patients were deemed to have suffering that was intolerable and irremediable, it turned out that their suffering did become bearable and, furthermore, we can identify a cause. The cause, it turns out, was not a new medication or ECT or other treatment. It was the communication to them that they qualified for EAS. Words did the work.
Second, it seems a paradox that what makes the “intolerable” suffering tolerable is, in effect, the recognition by someone else that one’s suffering is intolerable. Yet, from a psychological perspective, this is not a paradox; it is a readily recognizable phenomenon for experienced clinicians.
For some, like the patient described above, a crucial part of suffering intolerably is the sense that no one understands how one feels. Suffering is solitary. What makes it worse, and sometimes unbearable, is the aloneness associated with it. When this aloneness is ameliorated by helping a patient feel that her suffering has been understood, it has a significant therapeutic effect.
Third, we should be humble about how we use the term “intolerable”. Although it seems to imply a kind of magnitude, like a weight that is too much to bear, the metaphor is misleading. Instead, intolerability is a kind of evaluation, a judgment that a suffering person makes.
Why does this matter? An overwhelming weight seems like something that cannot be remediated without directly reducing the weight, such as changing the course of the psychiatric disorder. That implies that the only way the suffering can be reduced is by first “curing” the illness.
But intolerability as a judgment or an evaluation — or even as a construal about one’s situation — can itself be ameliorated even if the “weight” is not first lessened. It turns out that there are ways to help people judge their previously unbearable “weight” is not as unbearable as they thought. The above case describes how this can happen.
What are the implications of these points?
I think, at minimum, we need to step back and recognize how complex a concept intolerable suffering is. Regardless of where one stands on the legality of EAS, it must be recognized that this is a concept that we do not fully understand. We can try to tame this complex concept with a shallow and vacuous definition but this simply brushes aside the difficulty.
It is a puzzle how a concept that is so poorly understood can serve as an eligibility criterion for a decision as major as whether one continues to live or not.
Scott Kim is a Senior Investigator in the Department of Bioethics at the Clinical Center, National Institutes of Health. Prior to coming to the NIH, he was professor of psychiatry and co-director of the Center for Bioethics and Social Sciences in Medicine, University of Michigan. He is an adjunct professor of psychiatry at the University of Michigan and an adjunct professor of neurology at the University of Rochester. His article is printed with permission