JAMA special issue ‘Death, Dying, and End of Life’

This week’s JAMA has several articles and an editorial on various issues in end-of-life care, including assisted suicide/dying and euthanasia.  Here’s the editors’ summary of the issue.  There are excellent articles for and against assisted suicide, a commentary by a prominent Canadian doctor on recent events in Canada, a masterful summary of key end-of-life care issues by Atul Gawande (free to anyone), among others.  The issue addresses not just the assisted death controversy but puts it in a broader context of what it’s like to die in modern society, and factors that so sadly work against helping people achieve a good death in these modern health care systems.

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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%