- The Quest to Reform End of Life Care:Rethinking Assumptions and Setting New Directions
The United States Supreme Court decision in the case of Nancy Beth Cruzan, Cruzan v. Director, Missouri Department of Health, was a landmark in law concerning decision-making near the end of life, but it was not the end of social controversy. The Court established the constitutional right to refuse medical treatment—even life-prolonging medical treatment—but it did not settle the moral question of how and when this legal right should be exercised, nor did it lessen the gap between the theory of how end of life decisions should be made and the practice of how such decisions actually are made at the bedside.
Twenty-five years after Cruzan, end of life care is a nexus of cultural and political conflict. The mass media's aggressive pursuit of discord, coupled with various interest groups' use of the Internet to amplify divergent points of view, fuel the polarization of the issue. Sifting out accurate, responsible medical information and opinion from unfounded or exaggerated claims has become exceedingly difficult. Although conflict and rhetoric ran high in the 1980s as the Cruzan case moved through the courts, that episode seems almost calm compared to the spectacle unleashed in 2005 by the sad case of Terri Schiavo.
In this essay we aim to synthesize and discuss many of the insights and arguments contained in the preceding papers. We also draw a series of lessons—"recommendations" seems too precise and definitive a word for the current state of play in this field—about where the movement to reform end of life care should head.
Before turning to specifics, one general observation is in order about the type of discourse that should be the norm in the end of life care reform movement. Advocacy must ground its ethical arguments in the best and most objective understanding of medical facts available. It is also essential that this movement remain dynamic, flexible, and open to new ideas and to conversation with new voices. Reasoned discourse, pragmatic improvement, and respect for civil rights and human dignity must be the hallmarks of end of life care reform in the years ahead.
How Far Have We Come?
Between the Quinlan decision in 1976 and the Cruzan decision in 1990, something like a consensus emerged, at least in the law. But end of life decision-making remains far from ideal. Many people die today while still in pursuit of unrealistic, futile hopes for cure; many deaths leave surviving family members and loved ones feeling regret as well as grief and loss. Dying becomes the object of conflict, within families or between family and health professionals. People die, not in the familiar surroundings of home or a good nursing facility, but in an ambulance, emergency room, or intensive care unit. Equally troubling is the fact that many people still die in severe pain—not because pain cannot be treated or managed (that is very rare), but due to lack of physician training, unnecessary regulatory red tape, and financial barriers to access to hospice and palliative care services.
What has gone wrong and continues to go wrong? Three themes in answer to this question resonate in the essays collected here. [End Page S52] For one thing, most people would prefer not to stare death in the face—at least not their own. Consider people with a life-limiting illness who retain decision-making capacity. Some of them resist enrolling in a hospice program until very late, for it requires that they forgo nonpalliative (curative) treatments, and it feels like giving up hope. (For their part, doctors don't really know when to recommend hospice enrollment, and they don't want to feel as though they are abandoning their patients.) Some don't execute an advance directive, or, if they do, they have not talked to their health care proxy (or the rest of their family) about their wishes and values in enough detail to provide useful guidance. Then there are those critically and terminally ill people who have lost decision-making capacity; even more uncertainty and trouble arise in their cases. A...