Dementia, Autonomy, and Supported Healthcare Decision Making
68 Pages Posted: 10 Apr 2019 Last revised: 13 Apr 2020
Date Written: March 18, 2019
Healthcare providers often rely on surrogates to decide on behalf of their patients with dementia who are deemed incapable of exercising autonomy. There is a longstanding debate about the appropriate standard of surrogate healthcare decisionmaking for these patients. Many influential scholars argue that the precedent autonomy of the person with dementia should be respected, and healthcare decision-making laws generally reflect this principle. These laws direct surrogate decisionmakers to follow instructions in living wills or to decide on the basis of the wishes and values of the person before the onset of dementia. But other prominent scholars have questioned whether surrogates should instead use the best interests standard, which accounts for the current interests of the person with dementia.
This debate about decision-making standards ignores an arguably more important issue: who should be deciding? Empirical research demonstrates that persons with mild dementia retain the ability to make or participate in decisions despite their acquired cognitive impairments, and that they prefer to be actively involved in healthcare decisionmaking. However, persons with dementia are routinely marginalized in the decision-making process, which leads to a decline in their psychological wellbeing.
Based on studies of their decision-making abilities, preferences, and experiences, this Article will argue that persons with dementia should not be prevented from making their own healthcare decisions. Stated differently, persons with dementia should have the legal right to make their own healthcare decisions at the time when the decisions need to be made. Ensuring this right will require looking beyond surrogate-based healthcare decision-making law, which facilitates the exclusion of persons with dementia from decisionmaking.
Disability law in six U.S. jurisdictions provides an alternative decision-making model, known as supported decisionmaking, which empowers persons with cognitive impairments to make their own decisions and could be usefully applied to dementia. In supported decisionmaking, an adult with a disability (the “principal”) voluntarily chooses people to assist them in decisionmaking (a “supporter”) and formalizes this arrangement in a written agreement. The supporter’s role is to help the principal gather relevant information, think through the decision, and convey the decision to other people. Supported decisionmaking preserves the legal decision-making authority of a person with a disability rather than transferring such authority to a surrogate. Because supported decisionmaking accords with the preferences and interests of persons with dementia, supported decision-making laws should be widely adopted.
This novel application of supported decisionmaking to dementia also provides insight into the nature of autonomy in the larger context of late-life healthcare decisionmaking. My past research has demonstrated that autonomous decisionmaking in this context is relational, which is consistent with supported decisionmaking. This Article will further build upon this conceptualization and advance a new understanding of autonomy in healthcare decisionmaking as more closely approximating relational agency. With this revised understanding of autonomy and the adoption of supported decisionmaking, persons with dementia can remain autonomous for longer in the progression of their disease.
Keywords: dementia, autonomy, supported decision making, healthcare decision making, disability
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