Where Do You End, and I Begin? How Relationships Confound Advance Directives in the Care of Persons Living with Dementia

Philosophers and clinicians struggle with how to determine the validity of an advance directive to guide the care of a person living with dementia. Although Walsh (2020) highlights this important and enduring issue in bioethics that animates this struggle—the challenging gap between theoretical ethical and philosophical research on the one side, and clinical practices and research on the other—the principles she proposes to guide and improve the interpretation of advance directives don’t entirely bridge this gap.

One of the key problems seems to be a muddled idea of retention of values in general, and autonomy (as a moral value) in particular. Medical guidelines and practices, and intricate theoretical accounts share an assumption. Patient autonomy is interpreted as something solely situated in the patient, and the patient alone, and mustn’t be interfered with. Under this assumption, advance directives, as documents safeguarding the autonomous choices of competent agents, are problematic. Like some clever prankster, they set up a conflict in the interpretation of the very autonomy they are meant to protect: what ought we to do when respect for the autonomy of patient P prescribes that we both respect Will Number 1 (W1) and Will Number 2 (W2) when W1 and W2 are mutually exclusive? This conflict becomes painfully clear in cases where P’s W1 is expressed in an advance directive as, say, “do not continue to feed me if I’m not able to feed myself,” and W2 is P’s expressed will to live to eat, enjoying ice cream but refusing to eat broccoli. In the end, we seem stuck on a question: “Which person do we listen to, the ‘then self’ or the ‘now self?’”