Supported Decision-Making and Merciful Health Care Access: Respecting Autonomy at End of Life for Individuals with Cognitive Disabilities
Supported decision-making is a relatively new, powerful, and quickly developing alternative to restrictive guardianships and other draconian surrogate decision-making arrangements for individuals with cognitive disabilities. Its power lies specifically in the protection and affirmation of their autonomy, allowing these individuals to remain central in the planning of their lives and affairs. Despite supported decision-making’s theoretical promise, it is often unclear whether and how the model interacts with other legislation presiding over how one may make crucial life choices, such as those at end of life.
This Note attempts to bridge the gap by analyzing how supported decision-making may be a valuable tool in effectuating equal access to end-of-life health care. For several reasons, individuals with disabilities are living longer and are subsequently more likely to encounter complex end-of-life treatment decisions. Unfortunately, they also face significant barriers in accessing health services. Their autonomy is often subjugated in favor of paternalistic norms, potentially rendering them ineligible for certain pain-mitigating care and forcing them to suffer needlessly at end of life. It is possible that through the use of supported decision-making, patients may be able to access pain mitigating treatment that may otherwise be unavailable to them. At the same time that supported decision making is gaining legal traction and public favor, laws like the FDA’s Expanded Access Program, otherwise called compassionate use, and state medical aid in dying legislation are promoting individual autonomy and the ethical concept of mercy by providing alternative avenues to limit suffering at end of life.
Undoubtedly, those with cognitive disabilities wishing to access medical aid in dying or compassionate use are in unique circumstances, but no individual should be forced to suffer through a terminal diagnosis without access to the health care of their choice. Although more research is needed regarding how supported decision-making agreements are commonly used and how they interact with end-of-life legislation, a continued push for expansion and revision of both supported decision-making statutes and end-of-life legislation may legitimize its application to end-of-life pain management. This would halt foreclosure of individuals’ rights to self-determination.
Recommended CitationBrenna M. Rosen, Supported Decision-Making and Merciful Health Care Access: Respecting Autonomy at End of Life for Individuals with Cognitive Disabilities, 80 Wash. & Lee L. Rev. 555 (2023).
Available at: https://scholarlycommons.law.wlu.edu/wlulr/vol80/iss1/11