During the tumultuous final weeks in the life of Terri Schiavo, the young woman who died in a Florida hospice in April, press reports in the nation's media typically focused on the bitter conflicts among members of her family over her treatment, disagreements among consultants over her state of consciousness, and the increasingly intense arguments in legislatures and the courts over her guardianship. Since her death, the case and the story of her death and dying have been mined for their bearing on our ongoing culture wars and for the debate over the place of "values" in our politics. In particular, the seeming failure of the Republican leadership to rally legislative support in favor of keeping her alive has been seized upon as evidence of the Right's overreaching, and as a lesson in the ironies of ideology. In the words of a writer in the New York Times Magazine, "the heirs to Goldwater and Reagan seemed to forget how they came to control the values debate in America in the first place: not by interfering in the moral choices of families but by promising to stop government from doing exactly that."
Many a hidden assumption lurks in that statement, not least concerning the (assumed) wishes of the dying woman herself. It is worth reminding ourselves, moreover, that she succumbed in the end by being deprived of food and water by order of the courts-which is to say, by order of government. But in what follows I want to concentrate on another, neglected aspect of this entire dismal episode.
Conspicuously missing from the chorus of voices arguing over the meaning and implications of the Schiavo case have been the views of a class of people with a uniquely relevant body of experience and insight: namely, the doctors and nurses who customarily provide care to patients like Terri Schiavo. As a result, few people appear to have grasped that the way she died was most unusual. That, instead, it has been widely understood to be not only a proper but also a perfectly commonsensical way to die, a way approved of by most doctors and nurses, can only be explained by a deep change that has taken place over the last decades in our thinking about how to care for the helpless and the disabled among us.
Let us begin with the published facts. In 1990, when Terri Schiavo was in her mid-twenties, she suffered a cardiac arrest that produced a severe cerebral anoxic injury-anoxia being an abnormally low amount of oxygen in the body's tissues-and coma. From this coma she emerged gradually, settling for the next fifteen years into an impaired state of consciousness. She could swallow, breathe, sleep, and awaken without assistance, and could react to sudden sounds with a glance, or to pain by grimacing or groaning. But she was apathetic to inner needs and external events. She was mute, mostly immobile, incontinent, psychologically blank.
For the last several years, Terri Schiavo was being treated in a hospice for terminally ill people. There she received basic nursing care for her bodily needs-she was bathed and turned on schedule-while nutritious fluids were supplied through a tube that had been inserted through her abdomen into her stomach during her earlier treatment for injury. Because of her immobility and apathy, she gradually developed muscle contractions that twisted her limbs and body into a fixed contorted posture. She suffered frequent bedsores, and, with poor oral hygiene, her teeth rotted. In this state she was sustained by the regular attention of a devoted staff and family, being financially supported by money her husband Michael had gained for her through a malpractice suit.
And so she would have remained-alive and physically stable, giving off a few signals that were possibly reflexive but were believed by some members of the hospice staff and her family to represent modest signs of awareness of her surroundings-until, within a period of years, an infection, a blood clot, or a cardio-respiratory difficulty would bring her life to an end. …