The Magazine

How Liberalism Failed Terri Schiavo

From the April 4, 2005 issue: The question is not only what she would have wanted, but what we owe her.

Apr 4, 2005, Vol. 10, No. 27 • By ERIC COHEN
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THE STORY OF TERRI SCHIAVO is both peculiar in its details and paradigmatic in its meaning. The legal twists, political turns, and central characters are so odd that one hesitates to draw any broader conclusions. But the Schiavo case is also a tragic example of the moral and legal confusions that govern how we care for those who cannot speak for themselves, especially those whose lives might seem less than fully human. And so we have a responsibility to confront what has happened and why--especially if we are to understand our moral obligation as caregivers for incapacitated persons, and our civic obligation to protect those who lack the capacity to express their will but are still human, still living, and still deserving of equal protection under the law.

In February 1990, a sudden loss of oxygen to the brain left Theresa Marie Schiavo in a coma and eventually in a profoundly incapacitated state. Terri's husband, Michael Schiavo, took care of her, working alongside Terri's parents. He took her to numerous doctors; he pursued experimental treatments; he sought at least some modest restoration of her self-awareness. In November 1992, he testified at a malpractice hearing that he would care for Terri for the rest of her life, that he "wouldn't trade her for the world," that he was going to nursing school to become a better caregiver. He explicitly reaffirmed his marriage vow, "through sickness, in health."

But the lonely husband eventually began seeing other women. His frustration with his wife's lack of improvement seemed to grow. When Terri suffered a urinary tract infection in the summer of 1993, he decided to cease all treatment, believing that her time to die had come, that this was what Terri would have wanted. But Terri's caregivers refused to let her die, and Michael Schiavo relented--for the time being. Not all Terri's doctors, however, saw their medical obligation in the same way; one physician declared that Terri had basically been dead for years, and told Michael that he should remove her feeding tube. Michael responded that he "couldn't do that to Terri," that he could never leave his wife to die of dehydration. But at some point, his heart changed. He decided that it was time for her final exit and his new beginning. He decided that his own wishes--for children, for a new family, for new love unclouded by old obligations--were also her wishes. He decided that she had a right to die and that he had a right to let her die.

Terri's parents, Robert and Mary Schindler, objected. They claimed that their son-in-law was no longer a fit guardian; that he was motivated by the money he would inherit at Terri's death; that Terri could improve with more love and better care. And so a long legal drama ensued, making its way through the Florida court system, centered on two sets of questions: First, what would Terri Schiavo have wanted? Would she want to die rather than live in a profoundly incapacitated condition? Was Michael Schiavo's decision to remove her feeding tube an act of fidelity to his wife's prior wishes or an act of betrayal of the woman entrusted to his care? Second, what was Terri Schiavo's precise medical condition? Did she have any hope of recovery or improvement? If her condition was unalterable--the persistence of sleeping and waking, the inscrutable moans, the uncontrolled movement of her bladder, the apparent absence of any self-awareness--was her life still meaningful?

THE FIRST QUESTION--what would Terri Schiavo have wanted?--is the central question of modern liberalism when it comes to caring for those who cannot speak for themselves. It is the autonomy question, the self-determination question, the right to privacy question. At its best, the liberal autonomy regime protects the disabled from having other people's wishes wrongly imposed on them--whether in the form of over-treatment or under-treatment. And it affirms the "liberty interest" of those who no longer possess the capacity to act freely, by allowing the past self to speak for the present one. In legal terms, this is called the "substituted judgment" standard: We must do what the incompetent patient would have wanted; we must pretend that she could pass judgment on the worth of the person she is now, according to the interests and values of the person she once was.