Conflict and Consensus at the End of Life

It is hard to die in America. A process that should shield patients as they disengage from life instead leads with increasing frequency to conflict and media attention and provides an opportunity for third parties with political or self-serving agendas to feather their particular ideological and personal nests. For a few years after Quinlan (and before Wendland, Baby K, and Schiavo), it seemed as if a tentative consensus had been reached that death is not always the worst outcome. Families received support in their attempts to avoid a protracted dying for loved ones. Ethically and legally cognizable elements in end of life decisions included: the agreement of physicians about the prognosis of unlikely recovery; prior wishes of the patient related to medical treatment and quality of life; and matters of suffering. Clearly some patients and family wanted "everything done to maintain life," but if pain control were assured, many chose less invasive, more comforting interventions. But consensus is hard to achieve, and even harder to maintain, in a dichotomized society. Recent developments illustrate the truth of this proposition.

The medical-ethical climate is clearly changing and, in prominent cases, families are now demanding continued support for patients long after the patient has lost relational ability and conscious appreciation of surroundings. Moreover, these sorts of decisions appear to be part of a new political and moral agenda that sees the "right to life" as applying both to the beginning and to the end of existence. Rather than reaching a more finely honed consensus about the values and practices that undergird end of life care, conflict has come to dominate the discussion. The consequences are serious for patients, health care providers, family members, and society. Moreover, the economic costs of these ethical challenges will have a serious effect on allocation of resources in a population with an ever-increasing number of persons who are not medically insured.

Whatever consensus once existed in end of life care was based on the assumption that death is not always the worst medical option for a terminally ill, suffering, or insensate patient. But defining the worst and the best is never simple. Everyone is ambivalent about death: both the family members who confront this most singular and terrifying event, and the physicians, nurses, and others who regularly witness it. In end of life narratives, major confrontations about death often build on a history of small prior skirmishes. Increasingly, private conflict is playing out not in patient rooms and hospital corridors, but rather in the nation's courts and legislatures. Conflict about death and dying is one of the new arenas for exhibiting the political, social, and moral cleavages in American society.

Conflict is endemic in American society. We thrive on it and encourage it. We litigate civil disagreements that would have no place in the courts of other nations. The founding fathers disagreed about the underlying principles of the statehood. A largely two-party system has regularly magnified political, economic, and religious differences in pursuit of politically viable territory. Democracy is messy and unkempt; it provides a platform for voices that challenge expert opinion and insist on the integrity and wisdom of their dissenting positions. And our once emerging but apparently now declining consensus about the end of life—forged in courts and state legislatures, supported by model legislation, and regulated by departments of health—is in danger of being entirely undercut by politics and the needs of the infotainment industry.

A Family Illness, by Robert Pope By permission of the Robert Pope Foundation.

The brief period of consensus on death and dying facilitated the wide dissemination of "brain death" as an acceptable alternative to the prior understanding of death as the "irreversible cessation of cardiac and respiratory function." This change supported the development of organ donation by deceased persons. Consensus has also permitted the honing of standards for withdrawing and withholding life-sustaining care and has fostered the authority of health care agents to act on their judgment that the best interest of the patient lies in death. The growth of palliative care...