Empty hospital food tray with plate and glass

The Ethics of Dementia Advance Directives for Receiving Oral Food and Water

By Beatrice Brown

Last month, Kaiser Health News (KHN) told the story of Susan Saran, a woman diagnosed with frontotemporal dementia. According to KHN, Saran consulted a lawyer and signed an advance directive for dementia after experiencing two brain hemorrhages in 2018. The document directs caregivers to withhold hand feeding and fluids at the end of life for those with advanced dementia. However, her continuing care retirement community told her that they could not honor her wishes because “the center is required by state and federal law to offer regular daily meals, with feeding assistance if necessary.” As noted by Dr. Stanley Terman, “Even when people document their choices – while they still have the ability to do so – there’s no guarantee those instructions will be honored.”

According to KHN, these dementia advance directives are “a controversial form” of voluntarily stopping eating and drinking (VSED), wherein a terminally ill patient who still retains mental capacity refuses food and water to hasten their death. VSED is considered by many to be a morally acceptable extension of a patient’s right to refuse treatment, a right codified in the landmark cases of Karen Ann Quinlan and Nancy Cruzan. The ethical question here, then, is whether the refusal of hand feeding and fluids requested in dementia advance directives is another form of VSED and is thus morally permissible, or if this refusal is ethically distinct from VSED and is perhaps morally prohibited.

Here, I wish to argue that the former interpretation, and not the latter, is the correct moral analysis of the issue. Although some may argue that VSED is morally impermissible, I set aside this debate and start with the assumption that VSED is, in fact, morally permissible to focus on the specific issue of refusing hand feeding and fluids for a patient with dementia, as this issue has been less studied. There are two key issues in determining the moral equivalence of VSED in its traditional sense and this form of “advance” VSED: 1) whether this “advance” VSED can be considered refusal of medical treatment; and 2) whether one’s current self has any authority over one’s future self in making medical decisions.

Dr. Barak Gaster, a professor of medicine at the University of Washington, told KHN that “The debate […] boils down to whether assisted feeding is ‘basic support’ or ‘a medical intervention that can be declined in advance.’” For example, in Widener Law Review, Thaddeus Mason Pope and Lindsey E. Anderson argue that hand feeding qualifies as medical treatment for several reasons: 1) hand feeding is intrusive; 2) it requires special personnel or special training; 3) it often requires special eating aids; and 4) it requires special nutritional formulations. I believe that these seem to be appropriate criteria for determining whether something should be deemed medical treatment. As such, if hand feeding is medical treatment, then it seems that refusing hand feeding is morally equivalent to VSED in this respect.

There has been extensive debate over whether advance directives should hold at all in cases of dementia. Those who believe they should not argue that the current self who is crafting the advance directive is distinct from the future self who will be affected by the advance directive, on the basis of a given view of personal identity. However, such a view disrespects the autonomy of the current self. Saran, for example, told KHN, “I am appalled that my future demented self takes precedence over my competent current self.” Additionally, such concerns of a distinction between current and future self seem to be limited not just to patients with dementia – what about patients with significant brain trauma who lose decision-making capacity but have documented their wishes for care in an advance directive, such as refusal of life-sustaining treatment? If we do not allow patients with dementia to determine the future of their care while they still retain decision-making capacity, then either we are treating them unfairly compared to patients in other medical circumstances or we should not respect advance directives for any patient. Advance directives have long been seen as an ethically appropriate way to respect the autonomy of individuals, and as such, I believe that the latter would be an inappropriate direction to go in. Thus, we should respect the advance directives for those with dementia just as we do for others, including with respect to the refusal of hand feeding and fluids.

Furthermore, perhaps there is a way to respect both the current self and the future self. For example, End of Life Choices New York developed the Advance Directive for Receiving Oral Food and Fluids in the Event of Dementia, in which there are two options, Option A and Option B. In Option A, the individual “refuses all oral assisted feedings once the patient is in an advanced stage of dementia and the ability to self-feed and make decisions has been lost.” In Option B, the individual “permits assisted oral feeding in advanced dementia but limits that provision to comfort-focused feeding that must be stopped when the patient becomes disinterested or unwilling to be fed.” Option B seems optimal for those concerned with respecting the autonomy of a future self that may be considered distinct from the current self, suggesting that perhaps an appropriate compromise from a policy perspective would be to only allow these advance directives in the form of Option B.

Although there is much ethical and legal complexity to this issue, we must begin to address how to handle the wishes of those with dementia with respect to oral feeding and fluids if we are to take individual autonomy seriously. Saran told KHN that “her situation should be viewed as a cautionary tale” and that “she wishes she’d asked more questions, insisted on answers about how exactly she would die once her dementia progressed.” Her experience is not unique, and it is imperative that all patients be made aware of their options at the end of their lives.

Beatrice Brown

Beatrice (Bea) Brown is a Research Assistant for the Program On Regulation, Therapeutics, and Law (PORTAL) within the Division of Pharmacoepidemiology and Pharmacoeconomics at Brigham and Women's Hospital. She received her Master of Bioethics (MBE) from Harvard Medical School in 2020 and her BA in Ethics, Politics, & Economics from Yale University in 2019. During the 2019-2020 academic year, Bea was a Petrie-Flom Student Fellow and wrote a research paper proposing a new argument for a constitutional right to physician-assisted death by redefining what it means to heal.

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