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09/03/2018

Avoiding Dementia, Causing Moral Distress

In “Avoiding Deep Dementia,” an essay in the current issue of the Hastings Center Report, legal scholar Norman Cantor explains why he has an advance directive that calls  for voluntary stopping of eating and drinking as a means of ending his life if he develops dementia and reaches a particular state of decline. Cantor’s essay and three accompanying commentaries bring up many important points. Let me address one of them, in Rebecca Dresser’s response.

Dresser makes much of the undeniable fact that many people with dementia do not suffer, that they experience pleasure and adjust well to their new circumstances.  What is the significance of that fact, for Dresser?

She cannot be arguing that Cantor’s fears for his future are unfounded, because Cantor is quite clear that he is not primarily concerned that he would suffer if he became demented.  Rather, he is concerned about a life he considers “demeaning,” and having others’ memories of him “soiled.”  Thus, Dresser’s point that many people with dementia enjoy their lives brings no solace to Cantor.

Rather, Dresser argues that demented people who are not suffering have interests in continuing their lives, interests that ought to be respected and that should outweigh the interests people have in precedent autonomy.  After all, the person who wrote the directive, who prized independence and autonomy, no longer exists, and her wishes should not be allowed to extinguish the life of the current person, who is enjoying her life. For reasons rehearsed by many people over the years that this debate has progressed, I am not persuaded.   Nancy Rhoden, for example, has argued that Dresser’s stance treats formally competent, now demented, people in the same way as people who were never competent.

However, Dresser’s position points to a different problem, one that is empirical rather than philosophical.  As long as the demented person is enjoying her diminished life, it will be psychologically and emotionally difficult, perhaps impossible, for most people to withhold food or even simple medical interventions. Even if they believe they ought to comply with the advance directive, the moral distress is simply too great. This is especially true for current caregivers who have no experience of the prior person who wrote the directive.

The problem of moral distress is especially salient because Cantor hopes to resort to VSED to have his life cut short should he fall into dementia, and should he not speedily be delivered by pneumonia or some other life-threatening condition. As Jacquelyn Slomka wrote in a 1995 article in Archives of Internal Medicine, providing someone with food keeps them connected to the social system, reaffirms them as persons. Making sure that people are fed feels to many of us like the most basic human interaction. Many people would agree that tube feeding is a medical intervention like any other, and can be withdrawn like any other. But hand feeding feels different. Many caregivers, family members or health professionals, would be willing to withhold even something as simple as an antibiotic for pneumonia, and would also agree to honor a refusal of artificial nutrition and hydration; however, withholding of actual food and water by hand creates too much moral distress. Even if Cantor were willing to be the cause of acute moral distress, I believe that his gamble would not pay off.  Once the “original” Cantor has been displaced by a pleasantly demented Cantor who is enjoying his chocolate ice cream, the likelihood that the advance directive will be followed is pretty slim.

I share Cantor’s values, and his abhorrence of ending his life in dementia. The result of this situation is that the pleasantly demented self potentially lurking in my future is my worst enemy—a counterfeit self who soaks up my resources, burdens my family, and besmirches my memory, and who stands in the way of my most precious goal: to end my life with dignity.   Rather than “mourning” my death, as Daniel Sulmasy suggests in his response to Cantor, my friends and family will heave a deep sigh of relief, knowing that my real self expired many years earlier. Because I do not share Cantor’s confidence that a directive will be followed, I believe that pre-emptive suicide is the only way to be sure that this future self does not come to inhabit my body and frustrate my goals.

In fact, one sadly rational reason for suicide, a reason often given, is  that people do not trust that their wishes will be followed as their lives come to a close. Dresser, Sulmasy, and others ought to consider if, by refusing to respect people’s wishes, they may be extending some lives, but cutting others short.

Dena S. Davis, JD, PhD, Hastings Center Fellow, is the endowed presidential chair in health and a professor of bioethics and religion studies at Lehigh University.

 

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