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Ethical Perspectives on Advance Directives for Dementia

Four articles in the Hastings Center Report make an array of claims about  whether advance directives should or should not be used to instruct caregivers to withhold oral feeding of a person who reaches a designated stage of  dementia. I would like to advance some central ethical observations on the matter.

A life can be harmed or benefitted by its length, regardless of suffering. In making claims about the value of life in living long into dementia, we can easily miss what constitutes the object of harm: harm to a life, not merely harm in experiencing some particular time in life. It is life with temporal extension that we refer to as “ourselves,” something of a narrative whole over years of anticipation, memory, recognition. Without such extension we would not even speak of “having a life” or of “our own life.” The question, “whose life is it, anyway?” provides basic normative force for advance directives.

Without such a notion of a life, we would hardly have the sense of being persons. Thus respect for persons is at the very heart of the debate about advance directives for dementia, and it is threatened by any exclusive focus on quality of life at particular times in life.

The sheer fact of previous competence must be important. The then-self vs. now-self problem that Rebecca Dresser has prominently emphasized is a genuine problem, but as Nancy Rhoden elegantly noted in 1990, to attend only to the current noncompetent self without recognizing the wishes of the previously competent self would be to treat the person as if she had never been competent . This is deeply disrespectful. The person with deep dementia is not a never-competent person. The fact of prior competency demands that advance directives be accorded significant normative weight. Writing in the Hastings Center Report, Daniel Sulmasy is right that Norman Cantor, should he develop advanced dementia, would still be Norman Cantor, but it is precisely because he still is Norman Cantor that his prior wishes for how his life ends matter.

Medicine has limits, but so does the value of life. Sulmasy distinguishes intentionally and directly ending life through measures like withholding oral feeding, which he opposes, from “acknowledging the limits of medicine, . . . [which] is a good thing.” Legally and ethically, though, the right to refuse medical treatment is not limited to situations of terminal illness or to refusing care that would involve complication and suffering. It also includes the right to refuse medical treatment that can be effective, such as an antibiotic for pneumonia. It thus includes the right to refuse treatment even when one’s intention is precisely to end life, not merely avoid suffering and complication. As Cantor explains, it is this right that persons are allowed to extend to times of future incompetence by advance directive.

The right to refuse treatment acknowledges not only the limits of medicine but also the limits of the value of life to the person whose life it is. Pneumonia “can become the old person’s friend,”  as Sulmasy writes, and basic antibiotics for it refused. But this applies as much to situations when survival itself no longer harbors intrinsic value for a patient as it applies to situations where treatment extends unacceptable suffering. If others should not be able to define the value of life for a person when suffering is involved, why should they be able to do so for a person who may not be suffering but who says that continued survival provides no additional value to—or diminishes the value of–her life?

People who write the most assertive advance directives are often very knowledgeable about dementia. Much is made of the change of perspective when a cognitively capable person becomes mentally disabled. The disability discrimination objection is often based on the claim that before people become cognitively disabled, they do not accurately understand what their lives will be like. There is much less for them to fear than they think, the argument goes: many cognitively disabled people don’t suffer and don’t consider their lives degrading.

The point is relevant, but the problem is overgeneralization. It is precisely because of their up-close, intimate knowledge of loved ones or patients with advanced dementia, who can live for years without needing lifesaving or life-sustaining medical treatment, that some people write strong directives to withhold not only life-sustaining treatment, but also oral feeding. They know that persons with advanced dementia typically don’t suffer, but they also have a well-founded sense of how little value life likely has for someone in such a state. It does not take a lot of imagination for me at present to observe that were I to lose the ability to anticipate tomorrow and remember having survived from yesterday, to me then, continued survival would have little if any value. If others allow me to act on this observation they are in no way disrespecting me, much less calling my life in that eventual state “unworthy.” Quite the contrary. They are putting themselves in my shoes and honoring my life.    

There are many ways to interpret “comfort feeding only.” Comfort feeding is typically regarded (as by Elizabeth Chuang and Lauren Sydney Flicker in the Hastings Center Report) as providing all food and drink that gives patients some degree of pleasure or comfort, and not providing any that causes discomfort (choking, coughing, diarrhea, fluid build-up in the lungs, etc.). The focus is not on providing enough food and fluid for patients to thrive. On one interpretation, comfort feeding only is no different from comfort feeding, for in comfort feeding food or drink that causes discomfort is not offered.

On another interpretation, however, “comfort feeding only” permits or even requires more: if the food is not necessary for comfort, don’t provide it. Palliative care becomes crucial. If with proper care a patient can be kept comfortable without further feeding, no further food need be provided.

The interpretation of “comfort feeding only” has significant implications for the reach of advance directives about oral feeding. When a competent patient voluntarily decides to stop eating and drinking, palliative care is used (moistening the lips and mouth and providing drugs to control distress and delirium if needed). When patients use an advance directive to extend their legal right to voluntarily stop eating and drinking, why would the extension not carry with it the same palliative care? Now suppose that a person directs her agent and future caregivers to “provide me comfort feeding only and withhold all other food and drink.” The logic of “only” here means that food should be provided only when the patient cannot otherwise be made comfortable. It would be entirely reasonable for the agent and caregivers to interpret comfort feeding only this way, departing from the usual practice of feeding as long as the feeding does not cause discomfort.

Varying interpretations here are only another sign of the complexities of writing and following advance directives to withhold food and fluid to avoid into years of ever-deepening dementia. The same essential difficulties afflict directives to withhold medical treatment: the then-self vs. now-self problem, what constitutes a relevant change of mind, competing interpretations when directives are not completely specific, etc. Such difficulties do not lead us to dismiss directives to withhold medical treatment. They should not lead us to dismiss directives to withhold oral feeding either.

Paul T. Menzel is a professor of philosophy emeritus at Pacific Lutheran University.

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Published on: September 6, 2018
Published in: Caregiving, Chronic Conditions and End of Life Care, End of Life, ethics, Hastings Bioethics Forum

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