Providing End-of-Life Care for Developmentally Disabled Individuals Edward L. King, EdD, JD, MSN, RN-C, CHPN Carol Lynn Esposito, EdD, JD, MS, RN Lucille Sollazzo, BSN, RN
■Abstract This article provides an introduction to some critical issues that arise at the end of life for people living in New York State with disabilities and is meant for nurses and all other members of the interdisciplinary team. Basic legal and ethical guidelines for decision-making at the end of life for both the individual and the practitioner will be introduced with an emphasis on how federal law defines a developmental disability, and when it is permissible under federal and New York State law to formulate an end-of-life-care plan for a developmentally disabled individual. Knowledge of an individual’s preferences, as well as their legal and ethical rights, will help practitioners support and advocate for the disabled patient and their families. Concepts such as informed consent, mental and physical assessment, health literacy, and plans of care will also be addressed.
Introduction Technological and medical advances have extended the lives of persons with developmental disabilities longer than ever before. As people age, they can contract chronic, debilitating medical conditions that require decision-making with regard to viable treatment options. While federal law affirms and protects an individual’s right to accept or refuse treatment under the Patient Self-Determination Act of 1990 (PSDA), deciding who can provide consent for treatment for those who have compromised decisional capacity has been the subject of much debate and legislation. The decision-making process is further complicated when the patient is developmentally disabled, has never had decisional capacity, or has wishes that are not known.
In New York State, decisions regarding treatment choices for persons with developmental disabilities are further complicated by legal and ethical strategies governing the withholding or withdrawing of life-sustaining treatment. In accordance with the PSDA, standards for decision-making are premised on which decisions can best preserve patient autonomy. New York decision-making standards include: substituted judgment, the best interests of the patient, clear and convincing evidence, or some other medico-legal standard. Applicable ethical and legal principles are examined in this article to guide nurses and other professional healthcare providers faced with advocating for end-of-life care for a person with a developmental disability who has never had the capacity to provide informed consent regarding treatment.
Edward L. King is currently an Associate Professor at Hostos Community College, part of the City University of New York. Carol Lynn Esposito is currently the Director of Nursing Education and Practice at the New York State Nurses Association. Lucille Sollazzo is currently the Associate Director of Nursing Education and Practice at the New York State Nurses Association. 4
Journal of the New York State Nurses Association, Volume 45, Number 1
