The End of End-of-Life Law

Abstract

“End-of-life decision-making” in the health care arena is increasingly governed by special rules that insist on legally exact, complex documentation, depend on idealized notions of patient autonomy, and may be driven by political ideology rather than concern for patients. These rules — though often well-intended — can impede rather than honor patients’ wishes, values, interests, and relationships. This article analyzes the effects of these special rules through discussion of patient stories, the empirical literature on advance care planning and patient preferences, and state surrogate decision-making statutes and living will forms. It argues that questions about medical care at the end of life should be approached like other important questions about medical care. Reducing the legal distinctions between these types of decisions can bring good legal/ethical practices in caring for patients generally to caring for them when they are dying and also bring important lessons learned from decades of end-of-life law and ethics to the care of patients at any stage of life and health. The article provides a blueprint for reform through eight general principles that should guide the law relating to all health care decisions, including those we now think of as end-of-life decisions.

Keywords: end-of-life, advance care planning, surrogate decision-making, life-sustaining treatment, life-prolonging procedures, living wills, dying, health care decisions, patient preferences, patient autonomy, pinette, artificial nutrition and hydration, futility, disability, right to know, best interests