"Just Act Normally": How Culture Gives Birth to Policy

I have a rendezvous with Death.

Where were you in 1986? I was in graduate school in Scotland, never suspecting where that doctorate in English literature would lead me. At The Hastings Center—then really in Hastings—Susan Wolf, the associate for law, was editing a book called Guidelines on the Termination of Life-Sustaining Treatment and the Care of the Dying. It was, in bioethics terms, a blockbuster. (The fabled last copy—as in, don't lose it, it's our last copy—is sitting on my desk.) It informed health policy and was widely cited in scholarly and professional literature and case law—most notably by Justice Sandra Day O'Connor in her 1990 concurring opinion in Cruzan.

The Guidelines was a consensus document born of an extraordinary team of over one hundred clinicians, scholars, and health care leaders. (Not surprisingly, the book includes a "dissents" section. Surprisingly, it's just two pages long.) Even in the long history of the Center, this one was, and continues to be, special. A unique resource designed for clinicians caring for critically and terminally ill patients, it spawned a generation of clinical practice guidelines that acknowledged ethical concerns. Issues flagged as "special problems" in the concluding section of the Guidelines—accommodating religious beliefs, determining quality of life, decision-making capacity and competence—continue to be debated in these pages, on ethics committees, and at the bedside: What counts as a "belief" that must be accommodated? Who decides what "quality of life" means with respect to another person's life? How can we honor a person's right to make decisions while protecting that person at the end of life?

Fast forward twenty years. Dying is still with us—no surprise there—as are its ethical dilemmas. So many "ethical" conflicts may be better described as being human in the face of the imminent loss of a loved one. The "web" is George Eliot's metaphor in Middlemarch for the fragile, sticky links between people. The original Guidelines acknowledged both the autonomous individual and the web that links her to others, seeking to draw clinicians' attention to decisions that should involve the patient and be ethically grounded. A report published by the Center shortly after the Guidelines project reflected this growing awareness of autonomy as, paradoxically, relational: "Autonomy is not some a priori property of persons abstractly conceived. It is an achievement of selves who are socially embedded and physically embodied."

Blockbusters tend to have sequels. Twenty years after Guidelines 1, thanks to the generous support of two private foundations, we are gearing up for our sequel, entitled Guidelines on End-of-Life Care. Guidelines 2 will maintain the familiar format—clear, succinct guidelines followed by extensive commentary—but will have new sections on futility, diversity, palliative care, surrogacy, and institutional policies, as well as updated clinical, legal, and policy information and discussions reflecting two decades of medical and technological advances, historic cases and rulings, and public debates. We anticipate that Guidelines 2 will be published, circulated, and consulted primarily as an electronic document and that we will use the Center's Web site to keep our audience posted on the project. George Eliot was right: it's all about the Web.