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.

This story is partly true, and some of the reformers' vision has been realized. Today people have much more control of their medical care at the end of life, the technological imperative has been bridled to some extent, and palliative care is taken more seriously in the medical mainstream. Over 700,000 people who die each year receive hospice services for at least a short period of time before death; and roughly three-quarters of all deaths in hospitals now come after some explicit decision has been made to forgo the use of some type of potentially life-prolonging intervention. Many people are fortunate enough to die with pain kept to a minimum, surrounded by the people they love, in a setting attentive to their spiritual, emotional, and physical needs. That is progress.

But while the story is partly true, it is altogether too facile and simplistic. What progress has been made is now in danger of being undone. The framework of principles for legitimate decision-making at the end of life built by the courts, the legislatures, and in the professional and ethical literature has not been embraced—indeed, it has been rejected, at least in large part—by increasingly powerful and vocal minorities; and political support for this framework, as well as its intellectual justification, seems to be eroding. This is a critical problem. It points to flaws in both our concepts and our institutions. Important assumptions—about autonomy, quality of life, trust, family dynamics, and the motivations of professionals and laypeople—need to be rethought. Our systems of decision-making and care delivery near the end of life need to be redesigned.

The topic of end of life care came into its own during the 1990s. The decade began with the Cruzan case, the Supreme Court's first landmark ruling on end of life care, in which the Court affirmed the constitutional right to refuse life-sustaining medical treatment. This was quickly followed by passage of the federal Patient Self-Determination Act, and of durable power of attorney for health...