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  • BIOETHICS FORUM ESSAY

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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Published on: September 3, 2018
Published in: Chronic Conditions and End of Life Care, End of Life, Hastings Bioethics Forum

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8 comments on “Avoiding Dementia, Causing Moral Distress

  1. Bonnie Steinbock on

    Terrific piece by Dena Davis. I think she’s right that the moral distress of caregivers, especially those who didn’t know the prior person who wrote the AD, poses a significant block to carrying out an AD to withhold food and water.

    Because this is a blog post, and not a full article, I wasn’t entirely sure whether Dena thinks that the moral distress of caregivers is merely a pragmatic block to the carrying out of wishes in an AD, or whether she thinks that their moral distress itself has moral weight in deciding whether to carry out the AD.

    Reply
    • Dena Davis on

      I do think it the moral distress of caregivers has some moral weight –not enough weight to override one’s right to end one’s life, but enough weight that one ought to avoid it if possible. Two strategies to do that are to end one’s life before one has to depend on others, or to make sure that one’s family and caregivers share one’s views so that they feel sadness but not moral distress.

      Reply
      • Michael Senf on

        Good point, but even if family appear to agree, when the time comes to execute the patient’s wishes, they may not be able to follow through. This is entirely understandable.

        Reply
  2. Gary Kopf on

    The ‘demented person’ is a different person at a different time from the ‘normal’ one. Why should the ‘normal’ person have this kind of control over the later ‘demented person’. This assumes the superiority and absolute control of the prior ‘normal person’ over the ‘demented person.’ The demented person does have rights, values, wishes. He does want his chocolate ice-cream. Why should the other ‘normal’ person of a different time have the right to deny him this simple pleasure, or life itself?

    Reply
    • Dena Davis on

      This is a common perspective. One might then ask, if the demented person is a different person, why she gets to keep my name and use my financial resources, why my children visit her, and so on. But on a less metaphysical level, people who think as you do need to own up to the fact that they are creating incentives to suicide for those people who fear being overtaken by demented, later selves.

      Reply
  3. Sue D. Porter on

    This essay rang true on many levels. I am with “End of Life Choices Oregon,” the only organization in Oregon that now implements the Death With Dignity Act. We get many calls from people whose lives have come to an end, but they don’t qualify for DWD because they’re not terminally ill.
    And more to the point, there are countless people who suffer dire irreversible physical or mental conditions who want to end their lives peacefully; withdrawing nutrition and liquids is their only option, and it should be supported. The idea that just because someone opens their mouth when a fork is at their lips (reflex) equates to wanting to be fed is preposterous.
    In plain language, wishes should be honored.
    (Btw, I was a visiting scholar in residence at Hastings – Jan., 2014.)

    Reply
  4. Arthur Frank on

    Thanks to Dena Davis; I agree. To me, the claim is not well stated as “precedent autonomy” (too legalistic and individualist for my taste). Rather, it’s the point made several decades ago by Ronald Dworkin that people want their lives to end in ways that affirm the values, especially relational values, they have sought to uphold throughout their lives. Davis’s point about not reducing people’s choice to a premature suicide is crucial to me. An increasing number of personal accounts support believing that medical assistance in dying avoids the family moral distress that is a risk of voluntary stopping of eating and drinking.

    Reply

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