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. Evolving Views of End of Life and Disability In the years since the 1976 case of Karen Ann Quinlan, much greater weight has been given, both in law and the culture at large, to informed consent; to the experiences, views, and needs of patients and families in the medical encounter; to respect for patient autonomy and family decision-making; and to the quality, not merely the preservation, of an individual's life. These beliefs have meshed well with the efforts of feminists and other marginalized groups to equalize the power relations between doctor and patient, and they have also supported twenty-first century cultural norms of self-fulfillment, self-determination, and control over one's destiny. These ideals should have promoted an alliance between end of life reform, the emerging scholarship of disability studies, and the movement for disability rights and equality. Unfortunately, many scholars and practicing health care professionals have failed to grasp crucial insights of disability scholars or activists. Despite the common cause of disability scholars and activists with those in the end of life movement around maximizing self-determination and giving more respect and authority to patients in their encounters with medicine, the end of life movement has sharply differed with disability theorists and activists in understanding how illness and impairment affect quality of life. Thanks to the sustained efforts of scholars, clinicians, and grassroots citizen groups like Compassion in Dying, both clinical practice and case law recognize that ill or dying patients and their intimates often are concerned about their experiences and relationships during whatever time they have left to live, not merely with how long they might be maintained by medications, feeding tubes, and breathing machines. Disability activist and lobbying groups such as Not Dead Yet or Americans Disabled for Attendant Programs Today (ADAPT) also espouse the goals of creating and maintaining opportunities for ill, disabled, or dying people to enjoy fulfilling, meaningful relationships, activities, and experiences for however much time they will live. Compassion in Dying and Not Dead Yet differ in their policy and practice goals for two reasons: they focus on different kinds of paradigm cases, and they have profoundly different understandings of how illness and disability affect life's meaning and rewards. …