The paradox and complexity of intolerable suffering

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 period in other countries), it is still widely debated as to its meaning and applicability as an operational criterion.

A recent paper raises (again) some important issues regarding this criterion.  In that paper by Dr. Thienpont and her colleagues from Belgium, they report on a qualitative analysis of what one might call ‘testimonies of suffering’ of over two dozen patients who requested EAS based on psychiatric disorders.

One patient is quoted as follows:

‘…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.’ (woman, 52 years old)

The authors of the paper quote another patient, 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.’ (woman, 30 years old, after consultation)

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 that paper, the authors reported that 16% (8 of 48) of persons 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, such as 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.




Heterodox Academy

I recently joined an organization called Heterodox Academy.  The website describes it as:

Heterodox Academy is an association of professors and graduate student affiliates who have come together to express their support for increasing viewpoint diversity—particularly political and ideological diversity—in universities.

The membership is ideologically and politically diverse, yet united by the above mission.  I doubt if I’ll ever post anything on their site, but it is refreshing to see that academics from different political perspectives coming together to uphold a vision higher than just advocating one’s own views.

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.)

The smartest voice in health news is a non-profit website that “evaluates health care journalism, advertising, marketing, public relations and other messages that may influence consumers and provides criteria that consumers can use to evaluate these messages themselves.”  Since it is independent and serves the public interest in an arena that is dominated by very powerful interested parties–some of whom are more open about serving their own (and their stockholders’) interests and others who are less open about their conflicts of interest (grouped all together:  pharmaceutical and device industries; health insurers; health providers; hospitals; and academic research centers)–they have to rely on foundations and private donations.  So if you are in the giving mood, I recommend this excellent website.  (FYI, I have no connection whatsoever with this website, except I learn a lot from it.)

Rilke and bioethics

My colleague Ray De Vries used a poem by Rainer Maria Rilke in a recent talk.  The translation is by Anita Barrows and Joanna Macy and can be found here.

Orpheus, do you hear
the new sound
droning and roaring?
Many now exult in it.

Though the Machine
insists on our praise,
who can listen
with all this noise?

See, it rolls over everything,
weakening us
and taking our place.

Since its strength is of our making,
why can’t it serve
and not possess us?

Sonnets to Orpheus I, 18

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.