Christy A. Coe | NYSBA Journal: Beyond Being Mortal: Developmentally Disabled and End-of-Life Treatment

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By Christy A. Coe

Christy A. Coe, M.S., J.D., is a Principal Attorney on the staff of the Mental Hygiene Legal Service for the Third Judicial Department. the Mental Hygiene Legal Service, Third Judicial Department.

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In his New York Times bestselling book Being Mortal: Medicine and What Matters in the End,1 Atul Gawande, M.D., explains that at the end of life, medicine often fails the people it is supposed to help. He laments that the "waning days of our lives are given over to treatments that addle our brains and sap our bodies for a sliver's chance of benefit."2 Commentators observed that Being Mortal demonstrates the harm we do as a society by turning aging and death into a medical problem rather than a human one.3 The author himself states that his book is "[a]bout the struggle to cope with the constraints of our biology, with the limits set by genes and cells and flesh and bones."4

The complexity of the issues surrounding death and dying as artfully captured by Dr. Gawande in his book were presaged in New York State by the case of Sheila Pouliot, a person with a profound intellectual disability who never had the ability to make her own health care decisions. She could never consider the questions Dr. Gawande suggests are essential when a person is confronted with a life-threatening illness or terminal process: "What is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the tradeoffs you are willing to make and not willing to make? And what is the course of action that best serves this understanding?"5 In Sheila Pouliot's case, substituted decisions by involved family members who recognized the limits of medicine to reverse the course of an incurable disease process could not be implemented because of the constraints of the New York common law. At that time, the law did not permit a third party to decide that a patient's quality of life had declined to a point where treatment could be withheld absent a prior competent choice.6 

Seemingly little known among the legal and medical professions, and largely as a result of the courageous legacy of Sheila Pouliot, is that since 2003, there has been a law in place to address decisions regarding end-of-life care for people with developmental disabilities who never had the capacity to make known their wishes and preferences. The Health Care Decisions Act for Persons with Mental Retardation (HCDA)7 is codified at Surrogate's Court Procedure Act (SCPA) 1750-b and applies to the approximately 180,000 people in New York State with developmental disabilities. The statute protects the right of people with developmental disabilities to receive efficacious treatment when medically indicated while promoting dignity at the end of life by permitting excessively burdensome treatments to be withheld or withdrawn upon the consent of legally authorized surrogates and pursuant to statutory standards. 

Codified seven years before the 2010 Family Health Care Decisions Act (FHCDA),8 SCPA 1750-b remains a discrete health care decision-making statute for people with developmental disabilities.9 By design, the FHCDA yields to preexisting surrogate decision-making statutes and regulations that apply to people with developmental disabilities and mental illness.10 Thus, an understanding of SCPA 1750-b by lawyers and clinicians remains a timely and compelling exercise in New York State. This article provides historical context for the enactment of the HCDA and explains its essential provisions using two case studies to illustrate application of the law. The article closes with a discussion of legal and ethical principles demonstrating that HCDA has promoted fairness, justice and dignity for people with developmental disabilities.

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Reprinted with permission from: New York State Bar Association Journal, October 2016, Vol. 88, No. 8, published by the New York State Bar Association, One Elk Street, Albany, NY 12207. 


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