Preface‪.‬

At the time of the Karen Ann Quinlan case in 1975, the law and ethics of forgoing life-sustaining treatment were terra incognita. By 1990, the Nancy Beth Cruzan case, the federal Patient Self-Determination Act, and court rulings and statutes in all fifty states had created a widely accepted framework for decision-making near the end of life. Establishing this framework is one of the great accomplishments in bioethics. Or so goes one common story. Expanded a little, the story goes like this: Thirty years ago, awareness began to grow that the experience of dying (for the individual, for the family, and often for health caregivers) was often a horror. Sentiment began to grow behind a movement to improve end of life care, and this reform movement was based on the belief that the horror of death was avoidable because it does not reside in dying or death per se, but in a poorly managed dying. What needed to be done, the reformers saw, was to look death in the face and wrest control over dying from doctors and hospitals, with their powerful but mindless drugs and machines--virtual loose cannons that could be as burdensome for some as they were beneficial to others. If lack of control, the technological imperative, and unrelieved pain and suffering are what make dying fearful, then the key to improving end of life care is twofold: First, we should enlist the law to empower persons to dictate the terms of their own medical care at the end of life (via constitutional rights and legally authorized advance directives). Second, we should enlist medicine to improve its skill at treating pain and suffering (financing for hospice and professional education in palliative care). If we could do these two things (the reformers hoped and believed), ordinary people and their families--the intended beneficiaries of all this work would embrace the reforms with open arms, insist on making their own medical decisions at life's end, and complete advance directives. By 1990, although work remained to be done to bring this agenda to fruition, the agenda itself, at least, was settled.