Recognizing Death While Affirming Life: Can End of Life Reform Uphold a Disabled Person's Interest in Continued Life‪?‬

Early in 2005, a real-life drama and two acclaimed films engaged the nation in discussions of issues that had been a staple of the end of life field for over twenty-five years. Terri Schiavo's medical condition resembled that of Nancy Cruzan, whose family had succeeded in convincing the United States Supreme Court to remove her feeding tube. Hollywood's Million Dollar Baby and Spain's The Sea Inside reminded many of the Broadway play and movie, Whose Life Is It Anyway, in which a sculptor, like the boxer and the diver of the contemporary films, chose death over life with disability. The powerful reactions to these motion pictures, the controversy over the Schiavo case, and, in Boston, a public dispute between a leading hospital and a patient's family over the withdrawal of life support, underscore our urgent need to reform how Americans deal with life-prolonging or life-ending decisions. Sometimes the media, the public, and professionals in end of life treatment and policy frame the debate in terms of "quality of life" versus "sanctity of life," but this casting oversimplifies the story and neglects critiques from people who share many values espoused by the end of life movement but nonetheless oppose some views that pervade the field. A sensitive decision-making process and sound conclusions demand weighing several factors: what gives life meaning and value for a particular individual; what circumstances or setting would permit the ill, disabled, or dying patient to derive comfort and fulfillment in existing relationships, experiences, or activities; whether a presumed decision-maker should ever be replaced by another person in the patient's life; and whether any factors other than patient and family preferences should influence life-ending decisions.