Death in the Legislature: Inventing Legal Tools for Autonomy

Introduction

These closing words of Justice Sandra Day O’Connor best express the United States Supreme Court’s desire to maintain the states’ responsibility for shaping the law of health care decision making. Indeed, since the 1976 landmark decision in New Jersey regarding Karen Quinlan, most of the formative work has occurred in state courts and legislatures. The Supreme Court prefers to see it continue there, and states have obliged by continuing a veritable legislative frenzy on the topic of health care decision making.

On one level, the law governing patient health care decision making rights is not especially intricate or vast, compared with, for example, tax law or trust and estate law. Yet, cast within the complex interplay of a patient’s personal history, technologically powerful medical care systems, and sociocultural demands, the law reflects a formidable, continuing struggle to find clearer pathways for decision making that are both respectful of personal autonomy and protective of patients’ well-being.

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