End of Story?

Pat Murphy examines the case of spoon-feeding Ms. Bentley from a clinical ethics perspective.

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The headlines say it all.

In the past weeks, various Canadian news sources (here and here) have featured versions of the story of Margot Bentley, an 82-year-old woman with advanced Alzheimer’s disease living at Maplewood House care home in Abbotsford, British Columbia. Ms. Bentley’s family, publicly represented by her daughter, Katherine Hammond, says their mother is being force-fed against her will; that health care providers are violating her wishes and ignoring her desire to die with dignity. An advance directive, completed in 1991, features prominently as the touchstone for Ms. Bentley’s values and expressed preferences.

As someone working in clinical ethics, I am both fascinated and frustrated by such media accounts.  I must confess I sometimes  register the same feelings of fascination and frustration about other, more professionally-familiar accounts –  patients’ health records, consultants’ notes, verbal reviews of systems presented at the bedside, ethics case studies, etc. I am often wary about what has been constructed, camouflaged and/or missed in these ‘tellings’.  Have some questions or considerations been unacknowledged or discounted?

SoldiersDeathTo some, the question, “What’s going on here?” in Ms. Bentley’s situation, is a no-brainer.  The right thing to do, the right reason to do it, the right people to do it and the right way to do it are all obvious.  With choices made and conclusions drawn, all that remains is to get on with things; end of story.

I remain convinced that the headlines do not, and cannot, say it all. Public discourse about such profound questions of human welfare and relationship are short-changed by sound bytes and slogans (e.g. “death with dignity”) that say both too little and say too much.

Ethical considerations embedded in the “What’s going on here?” are richly layered and unsettling.  Are there further questions that might give us pause when considering what counts as good practice in the care of a conscious, but incapable, person who is profoundly diminished as a result of the progression of her underlying fatal pathology, Alzheimer’s disease. In moral terms, might something entirely different be going on than what has been captured in the headlines?

Given that there are often competing accounts of what is actually happening in situations similar to Ms. Bentley’s, it is essential to ask the question, “What is happening clinically?”  What is the moral weight of that assessment? In the course of a chronic, life-limiting illness, such as Alzheimer’s dementia, what is the moral meaning of having reached a point; what bright line signals that “now” is the time to change the course of care? Does that “point” turn solely on a clinical assessment of signs that the person is actively dying; that death will occur regardless of the interventions pursued?  Is a determination of the imminence of death an important threshold to observe when entertaining actions we might take, or refrain from, in the care of another – particularly when that other is not capable of negotiating what ought to happen “now”?  Clinically, can we appreciate a difference between dying that is underway and inevitable, and, dying that has been induced (Callahan 1993)? Is the patho-physiological point more compelling (i.e. death is happening here) than other assessments (e.g. “She is not here anymore.”)?

Is force-feeding the only moral evaluation available to describe feeding in this circumstance or might something entirely different be going on?  Is force being attributed solely to how the oral feeding is achieved?   Is prompting, for example,  stroking the cheek of someone who is  able to safely take food by mouth, force?  In sorting out thresholds between what one ought to do, and what one ought to refrain from doing, does the person’s ability to effectively make use of the food and water received in this way, count for anything from an ethical perspective?  While setting aside means to circumvent the effects of an underlying pathology (e.g. tube-feeding in the absence of a gag reflex), if feeding by mouth can be achieved in the absence of frank and enduring resistance, might it be seen as a measure to avoid the harm associated with feelings of hunger and thirst a conscious person would inevitably experience?

For some, the assessment of force at play in this circumstance is linked most importantly to the notion of being forced against one’s will; the harm attached to having one’s self-defining interests interpreted by others and/or summarily set aside. Despite the surface appeal of advance directives, is a past expression of choice sufficient to direct what ought to happen “now”?  As a practical matter, how is the person’s will to be discerned when it is expressed in highly idiosyncratic language?  What of nuance? Might we actually trap ourselves and others when a literal interpretation of an advance directive would actually undermine important interests? Does the strategy of “pre-commitment” (Dresser 2003) require us to be studiously blind to discernible interests of a person in the “here and now”?

Finally, what is the place of those whose actions are necessary to realize the directions or choices articulated in an advance directive?  Is the scenario complete, so to speak, if attention is paid only to the chooser and/or those who represent the chooser? Is something important lost, if due consideration is not paid to other “actors” (e.g. bedside care providers; facility administrators, etc.)? What of their ethical evaluation of the requested choice? If, in this circumstance, the discontinuation of oral feeding is understood to be a harm – both neglecting to provide basic care to a vulnerable person and an act that induces clinical dying rather than merely allowing death – on what grounds would they be compelled to cooperate?  Is choice the only morally serious argument (Mol 2008)?

Headlines may say it all, but, that “all” may not be adequate in the world of clinical ethics; a world that requires both the cultivation of habits of thinking and exquisite attention to relationship.  Might it be that headlines appeal to us because they encrypt ethical conclusions and save us from unavoidably strenuous moral work?

Pat Murphy is a Clinical Ethicist with Health Care Ethics Service at St. Boniface General Hospital in Winnipeg, Canada.

See our previous post WITHHOLDING “THE NECESSARIES OF LIFE”?

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