Supported Decision-Making and Merciful Health Care Access: Respecting Autonomy at End of Life for Individuals with Cognitive Disabilities

Washington and Lee Law Review Volume 80 Issue 1 Article 11 Winter 2023 Supported Decision-Making and Merciful Health Care Access: Respecting Autonomy at End of Life for Individuals with Cognitive Disabilities Brenna M. Rosen Washington and Lee University School of Law, Follow this and additional works at: https://scholarlycommons.law.wlu.edu/wlulr Part of the Disability Law Commons, Elder Law Commons, and the Health Law and Policy Commons Recommended Citation Brenna 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 (). Available at: https://scholarlycommons.law.wlu.edu/wlulr/vol80/iss1/11 This Student Notes Colloquium is brought to you for free and open access by the Washington and Lee Law Review at Washington and Lee University School of Law Scholarly Commons. It has been accepted for inclusion in Washington and Lee Law Review by an authorized editor of Washington and Lee University School of Law Scholarly Commons. For more information, please contact . Supported Decision-Making and Merciful Health Care Access: Respecting Autonomy at End of Life for Individuals with Cognitive Disabilities Brenna M. Rosen* Abstract 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 * Recipient, Washington and Lee Law Council Law Review Award; J.D. Candidate, Class of 2023, Washington & Lee University School of Law; B.A., 2016, University of Vermont. Thank you to Professor Alexandra Klein for serving as my Note advisor and for writing a comment to this Note. Your continuing support, encouragement, and contributions to the field are invaluable. Thank you to Professor Beth Belmont for your truly wonderful way of connecting the topic of supported decision-making to the W&L Law community at the Student Note Colloquium. Thank you to Amitai Heller for your comment to this Note and your thoughtful and engaging presentation at the Colloquium. Thank you again to Amitai Heller and Jess Pezley for your guidance and expertise, your powerful advocacy in the field, and for intellectually challenging me at every turn. Thank you to Ryan D’Ercole for your role in making this Note a reality and to the entire 2022 W&L Law Review Upper Board for giving me the honor of the Law Council Law Review Award. Many thanks to the current W&L Law Review editorial board for your edits, suggestions, and hard work. Finally, thank you to my family and friends for your love and support throughout this process, particularly to Brighid O’Donoghue for her citation expertise, to Rich Gilliland for his endless patience and valuable input, and to my dad, Megan, Adam, Bonnie, and Nicole for making the trip to Lexington to support this work. 555 556 80 WASH. & LEE L. REV. 555 (2023) 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. Table of Contents INTRODUCTION .................................................................. 557 I. AUTONOMY AT END OF LIFE .................................... 561 A. Medical Autonomy at End of Life .................... 563 MERCIFUL HEALTHCARE ACCESS 557 B. Recognition of Disabled Autonomy .................. 566 II. END-OF-LIFE DECISION-MAKING ............................ 568 A. Advance Directives ............................................ 570 B. Surrogate Decision-Making.............................. 574 C. Guardianship .................................................... 576 D. Supported Decision-Making ............................. 581 III. SUPPORTED DECISION-MAKING AND EQUAL ACCESS AT END OF LIFE .......................................... 587 A. Medical Aid in Dying: What Is It? ................... 588 B. Supported Decision-Making and Medical Aid in Dying ............................................................ 591 C. Expanded Access: What Is It?........................... 594 D. Supported Decision-Making and Expanded Access ................................................................ 600 CONCLUSION ...................................................................... 606 INTRODUCTION Summer 2020 marked the thirtieth anniversary of the Americans with Disabilities Act (ADA),1 coinciding with the ongoing COVID-19 crisis and related discussions regarding autonomy and end-of-life healthcare.2 The prospect of using the antiviral drug Remdesivir for the treatment of COVID-19 despite its lack of known safety or efficacy reignited ongoing debates about an individual’s “right to try” or “right to die” when faced with a terminal medical diagnosis.3 In December 2019, 1. 42 U.S.C. § 12101. 2. See Press Release, Ctrs. for Disease Control & Prevention, The 30th Anniversary of the Americans with Disabili (...truncated)