Endings: The Terri Schiavo case

April 19, 2005

The Terri Schiavo case highlighted our worst fears: the loss of autonomy, the burden of care put on family members, a painful private decision splayed before the press and the public, and, most profoundly, seemingly needless suffering. Whatever else it does, the case should impel Christians to reexamine fundamental beliefs about care for the severely disabled and those at the end of life.

A key moral distinction is that between killing and allowing to die. When, for example, a dying patient refuses chemotherapy treatment that would extend a life of pain without offering real hope of recovery, he or she is allowing death to happen, not choosing it. For that reason most Christian thinkers have made a distinction between actively helping someone to die and discontinuing or foregoing medical procedures that are, to quote the Catholic Catechism, “burdensome, dangerous, extraordinary, or disproportionate to the expected outcome.” To have let Terri Schiavo die 15 years ago would not have been to kill her—her heart attack and her subsequent inability to ingest food on her own would have been the killers.

In other words, there can be grace in admitting death and in not demanding that medical science cure all ills. In Schiavo’s case, it seemed quixotic and even hubristic to insist, in the face of the bulk of the evidence, that she could recover meaningful brain function. Usually it’s the advocates of euthanasia who are accused of “playing God”; in this case, those who after 15 years looked to medicine to cure Terri Schiavo could be charged with assuming that role.

And yet, unlike a terminal cancer patient, Schiavo was not actually dying before her feeding tube was removed. With the tube in place she might have lived for many years. Disabled people especially worry that in a culture that prizes autonomy and utility above all else, the temporarily able-bodied will be all too ready to make decisions about what other kinds of lives are worth living.

The pope and several prominent Catholic leaders have recently insisted that feeding tubes must be provided to people who are, as Schiavo was, in a “persistent vegetative state.” These theologians make a distinction between “ordinary” and “extraordinary” treatment. Providing food and water, even through a tube, they say, is an ordinary form of care. Extraordinary treatment comprises painful or burdensome treatments unlikely to improve the patient’s life. From this perspective, removing Schiavo’s feeding tube was an act of murder by omission, not an act of “letting die.”

How ought Christians, who on Easter celebrated Jesus’ overcoming of death, and who depend for sustenance on the giving of bread and a cup from another’s hand, think about these things? Pastors are not strangers to the questions that the Schiavo family faced. In the vast majority of cases, such questions are resolved without fanfare, as the family weighs the medical diagnosis, the wishes of the patient, and their own sense of what is ordinary and extraordinary care. Even sharp disputes among family members can be handled in the church if there is an eye to reconciliation. The absence in this case of a community that could provide wise and gracious mediation to the family or help with their discernment, without the involvement of protesters, media and all three branches of state and federal governments, is the most lamentable part of a multilayered tragedy.