Advance Directives for Refusing Life-Sustaining Treatment in Dementia

Abstract

Aid-in-dying laws in the United States have two important restrictions. First, only patients who are terminally ill, defined as having a prognosis of six months or less to live, qualify. Second, at the time the patients take the lethal medication, they must be competent to make medical decisions. This means that an advance directive requesting aid in dying for a later time when the patient lacks decision-making capacity would be invalid. However, many people are more concerned about avoiding living into severe dementia for years—a time when they will lack decision-making capacity—than they are about preventing suffering or the loss of dignity or autonomy for a few months at the end of life. Gillian Bennett is an example of someone determined not to live into severe dementia. She opted for preemptive suicide in 2014, explaining why in a letter she posted online: “Every day I lose bits of myself, and it’s obvious that I am heading toward the state that all dementia patients eventually get to: not knowing who I am and requiring full-time care.”. A major problem with Bennett’s solution, however, is that the individual is likely thereby to be giving up some “good time.” A legal alternative to preemptive suicide is to create an advance directive stating the circumstances under which one wants not to receive any lifesaving or life-sustaining treatment, even the most basic and noninvasive. This option is our focus in this paper: how to create effective advance directives to avoid living into severe dementia. To be relevant to progressive dementia, the directive would need to state what kinds of care should be withheld and when. At the same time, advance directives for severe dementia face serious challenges. Before addressing these, we review the normative force of directives themselves.