Battles of terminology in bioethics

Back in 2008, Michigan voters were asked to approve the use of embryos in stem cell research. The names of the two opposing advocacy groups give a flavor for the strategic maneuvering by both sides: the opposition group called itself the Michigan Citizens Against Unrestricted Science & Experimentation and the pro-research group called itself CureMichigan.

This is of course just one example of many we can name where those on opposite sides try to influence the debate by labeling it in their favor.  (I am going to be lazy and not put quotes around the terms as I should in what follows).  Pro-choice vs pro-life. Research participants vs research subjects.  Patients vs clients (or, as in UK, service users).  And of course physician assisted suicide vs physician aid in dying (among others, the latest being simply ‘hastening death‘).  I’m trying very hard not to use the term _olitical _orrectness as that sets people off in different directions too.

Two things are certain about these battles. One, at some meeting or other in which one of the above issues is being debated, someone will insist on a certain terminology because the opposing party’s term is ‘offensive.’  Two, once the discussion about terminology starts, there is rarely a resolution, only occasional cowed acquiescence and more often many rolling of the eyes. (I must admit I have done my share of eye rolling.  I can happily report, however, that in my experience the tendency to eye roll seems to be one of temperament rather than ideology, as people on all sides seem to engage in it).

I think the following are true and widely accepted:

  1. Terms used in bioethics discussions and debates are often, or even usually, not neutral.
  2. Not all people, even on the same side of the debate, insist on terminological correctness.  This is true in assisted death debates in some places where, for example, in Belgium and Netherlands, assisted suicide and euthanasia are terms built into the laws.  In contrast, US laws permitting the practice usually reject the term assisted suicide.

The following premise may or may not be acceptable to all.

3.  An ethical issue should be something that should be resolved through, well…, reason, and not simply by asserting and manipulating power and influence.  The final terminology should be the result of a reasoned debate, not a means to wield power.

To insist on a universal use of one’s own preferred term while the debate is in progress therefore seems unreasonable (if you accept 3) since it is asking one’s opponent to adopt a position that is still being debated.  In fact, it is unclear, if you accept 3, that insisting on neutral (people who have not taken sides yet) parties using the preferred terms is a reasonable request either.

But doesn’t this ‘privilege’ the status quo position?  Not necessarily.

The most fair conclusion, it seems to me, is that we should respect the use of terms of each side’s own choosing, to the same extent that we should respect each side’s attempts to explain and persuade.  To insist that the other side, or even neutral parties, start using one’s own preferred term is to put the conclusion ahead of the premise. Or as logicians put it, it is begging the question.

Some implications:

  1. Academic journals should refrain from imposing on authors a specific terminology in an ongoing debate. It would be an unnecessary ideological intrusion to insist on a particular terminology while the debate is in progress.  For example, editors should not insist on either “research subject” or “research participant”–they should let the authors choose.
  2. It does not help to say that the other side’s terms are ‘offensive.’ This assertion is true only if the other side is wrong. But that is precisely what is being debated. Practically speaking, such a claim should be supported by an argument rather than simply insisted on; otherwise, it is a form of intellectual bullying.  Academics’ opinions and views are regarded with special weight because they are seen as objective arbiters (at least to some degree).  The duty to refrain from trying to win a debate by insisting on a more friendly terminology is therefore especially pertinent for academics.




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.

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.