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Why Dementia‐Specific Advance Directives Are a Misguided Idea

The two basic forms of advance directives (ADs) are living wills (LWs), which specify specific treatment wishes should a person become terminally ill and lack decisional capacity, and durable powers of attorney for healthcare (DPAHCs) that specify who should make decisions on a person’s behalf should they lose capacity. Beginning in the 1980s, disease-specific ADs were developed for patients with cancer, human immunodeficiency virus, and renal failure. These forms never gained traction among patients or clinicians, perhaps because it is difficult to get patients to complete even general ADs or because pieces of paper do not solve the serious ethical problems particular to individual patients even when they share the same diagnosis. Disease-specific ADs are now being promoted for dementia. Although well intended, dementia-specific ADs are misguided. First, they are a form of LW and merely magnify the problems inherent in LWs. Second, they threaten to further stigmatize and promote misunderstanding of an already complex syndrome. Third, they are not the best way to promote the authentic values and real interests of patients with dementia. In light of these concerns, I suggest an alternative approach to decision making for patients in this state, emphasizing the role of the surrogate, ideally named in a DPAHC. The idea of disease-specific ADs actually leads to an absurdity: if they make sense for one disease, why not for all? Even if there were disease-specific ADs for every one of the 68,000 International Classification of Diseases-10 codes, one would still be left with the same problem. The forms cannot cover every possible scenario within any given disease state, leaving the interpreter with vague or incomplete information as the basis for judgment. Additionally, we must consider the problem of comorbidities. What if the patient has both dementia and cancer? Which disease-specific AD should take precedence? Further, to the extent that they help at all, disease-specific ADs are redundant. Many of the decisions patients care about (such as whether to receive ventilator support) are not limited to a particular disease but cut across various diseases and circumstances.