Published April 4, 2005
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.
The right to have medical treatment withheld on one’s behalf was codified in a string of legal cases over the last few decades. Ideally, the individual’s wishes would be laid out in an advance directive or living will, describing in detail what kind of care a person would want under various conditions. This is procedural liberalism’s ideal of autonomy in action: The caregiver simply executes the dependent person’s prior orders, like a lawyer representing his client. But even persons without living wills still have a legal right to have their wishes respected, so long as those wishes can be discovered. Each state establishes specific criteria and procedures for adjudicating the incompetent individual’s wishes in cases where these wishes are not clear, especially when there is a dispute between family members (as in the Schiavo case) or between the family and the doctors.
Under the law of Florida, where the Schiavo case was adjudicated, the patient’s prior wishes must be demonstrated with “clear and convincing evidence”–the highest standard of legal certainty in civil cases. In cases where this standard of proof is not met, the court must “err on the side of life,” on the assumption that most people, even those who are profoundly disabled, would choose life rather than death. In other words, the state is not supposed to judge the comparative worth of different human beings, but to protect the right of individuals to decide for themselves when their lives would still have meaning. And in cases where the individual’s wishes are uncertain, the state of Florida is charged to remain neutral by not imposing death. This is the aim of procedural liberalism–and this is where things went terribly wrong in the Schiavo case.
With scant evidence, a Florida district court concluded that Terri Schiavo would clearly choose death over life in a profoundly incapacitated state. There was no living will, no advance directive, no formal instructions left by Terri Schiavo about what to do for her under such circumstances. Instead, the court relied entirely on Michael Schiavo’s recollection of a few casual conversations, on a train and watching television, in which Terri supposedly said that she wouldn’t want to live “if I ever have to be a burden to anybody” or be kept alive “on anything artificial.” This was evidence of her possible wishes, to be sure. But in light of Michael Schiavo’s own earlier statements and behavior–including his pledge to care for Terri for the rest of her days, his unwillingness to remove her feeding tube when the idea was first suggested, his shifting sense of moral obligation as he realized that Terri’s condition was probably permanent, and his romantic involvement with multiple other women–these recollections hardly constituted “clear and convincing evidence” of Terri’s wishes. In this case, the court had a legal obligation to “err on the side of life.” Instead, it chose to allow Michael Schiavo to choose death.
Part of the problem was simply judicial incompetence–especially the court’s decision, in direct violation of Florida law, to act as Terri Schiavo’s guardian at key moments of the case rather than appoint an independent guardian to represent her interests, separate from the interests of her husband and her parents. But the problem went deeper than incompetence: It also had to do with ideology–with a set of assumptions about what makes life worth living and thus worth protecting. Procedural liberalism (discerning and respecting the prior wishes of the incompetent person; preserving life when such wishes are not clear) gave way to ideological liberalism (treating incompetence itself as reasonable grounds for assuming that life is not worth living). When the district court’s decision to allow Michael Schiavo to remove the feeding tube was challenged, a Florida appeals court framed the question before it as follows:
[W]hether Theresa Marie Schindler Schiavo, not after a few weeks in a coma, but after ten years in a persistent vegetative state that has robbed her of most of her cerebrum and all but the most instinctive of neurological functions, with no hope of a medical cure but with sufficient money and strength of body to live indefinitely, would choose to continue the constant nursing care and the supporting tubes in hopes that a miracle would somehow recreate her missing brain tissue, or whether she would wish to permit a natural death process to take its course and for her family members and loved ones to be free to continue their lives. (emphasis added)
Now, one could surely read this as an effort to get inside Terri’s once competent mind. But more likely, it expresses the court’s own view of Terri’s now incompetent and incapacitated existence as a meaningless burden, a barrier to her husband’s freedom. The court’s obligation to discern objectively what Terri’s wishes were and whether they were clear–a question of fact–morphed into an inquiry as to whether she could ever get better, with the subjective assumption that life in her present condition was not meaningful life. The question became: Was she in a persistent vegetative state (PVS), and if so, can’t we assume that Terri believed death to be preferable to life in such a state?
In response, both sides brought out their best medical experts: Michael Schiavo’s doctors to quiet our consciences and assure us that Terri was already long gone, a mere ghost of her former self; the Schindlers’ doctors to tell us that she was still responsive to her environment and still might get better, even after years of not improving. Clearly, for many years, Terri’s treatment was subpar, and to this day many tests that could clarify her diagnosis have not been done. At the same time, a conservative estimate of her prospects for recovery suggests that her chances were slim, and that she would remain in her profoundly incapacitated state till the end of her days. The court finally ruled that she was indeed in a PVS, and that her feeding tube should be removed–which it was on October 15, 2003.
By then, of course, the Schiavo case had become a public drama, and the outcry at the prospect of leaving Terri to die was overwhelming. The Florida legislature sprang into action, and on October 21, 2003, it passed “Terri’s Law,” giving the governor authority to stay the court’s judgment, order the feeding tube back in, and order a review of the case by an independent guardian charged to report on Terri’s behalf. So began the next round of court fights and political battles. The ACLU joined Michael Schiavo in challenging the constitutionality of Terri’s Law. Terri’s court-appointed guardian issued a largely unhelpful report. And eventually, the Florida court overturned Terri’s Law, rejected the Schindlers’ appeals, and ordered that the feeding tube once again be removed–which it was the other day, on March 18, 2005. And despite Congress’s dramatic effort to restart the case in federal court and Gov. Jeb Bush’s continued encouragement to the Florida legislature to act again on her behalf, the most likely outcome at this writing is death by dehydration–the final triumph of Michael Schiavo’s will, and supposedly what Terri Schiavo herself would have wanted.
FOR ALL THE ATTENTION we have paid to the Schiavo case, we have asked many of the wrong questions, living as we do on the playing field of modern liberalism. We have asked whether she is really in a persistent vegetative state, instead of reflecting on what we owe people in a persistent vegetative state. We have asked what she would have wanted as a competent person imagining herself in such a condition, instead of asking what we owe the person who is now with us, a person who can no longer speak for herself, a person entrusted to the care of her family and the protection of her society.
Imagine, for example, that the Schindlers had agreed with Michael Schiavo that Terri’s time had come, that she would never have wanted to live like this, that the feeding tube keeping her alive needed to come out. Chances are, there would have been no federal case, no national story, no political controversy. Terri Schiavo would have been buried long ago, mourned by the family that decided on her behalf that death was preferable to life in her incapacitated state. Under law, such an outcome would have been unproblematic and uneventful, so long as no one had claimed that Terri Schiavo’s previous wishes were being violated. But morally, the deepest problem would remain: What do we owe those who are not dead or dying but profoundly disabled and permanently dependent? And even if such individuals made their desires clearly known while they were still competent, is it always right to follow their instructions–to be the executors of their living wills–even if it means being their willing executioners?
For some, it is an article of faith that individuals should decide for themselves how to be cared for in such cases. And no doubt one response to the Schiavo case will be a renewed call for living wills and advance directives–as if the tragedy here were that Michael Schiavo did not have written proof of Terri’s desires. But the real lesson of the Schiavo case is not that we all need living wills; it is that our dignity does not reside in our will alone, and that it is foolish to believe that the competent person I am now can establish, in advance, how I should be cared for if I become incapacitated and incompetent. The real lesson is that we are not mere creatures of the will: We still possess dignity and rights even when our capacity to make free choices is gone; and we do not possess the right to demand that others treat us as less worthy of care than we really are.
A true adherence to procedural liberalism–respecting a person’s clear wishes when they can be discovered, erring on the side of life when they cannot–would have led to a much better outcome in this case. It would have led the court to preserve Terri Schiavo’s life and deny Michael Schiavo’s request to let her die. But as we have learned, the descent from procedural liberalism’s respect for a person’s wishes to ideological liberalism’s lack of respect for incapacitated persons is relatively swift. Treating autonomy as an absolute makes a person’s dignity turn entirely on his or her capacity to act autonomously. It leads to the view that only those with the ability to express their will possess any dignity at all–everyone else is “life unworthy of life.”
This is what ideological liberalism now seems to believe–whether in regard to early human embryos, or late-stage dementia patients, or fetuses with Down syndrome. And in the end, the Schiavo case is just one more act in modern liberalism’s betrayal of the vulnerable people it once claimed to speak for. Instead of sympathizing with Terri Schiavo–a disabled woman, abandoned by her husband, seen by many as a burden on society–modern liberalism now sympathizes with Michael Schiavo, a healthy man seeking freedom from the burden of his disabled wife and self-fulfillment in the arms of another. And while one would think that divorce was the obvious solution, this was more than Michael Schiavo apparently could bear, since it would require a definitive act of betrayal instead of a supposed demonstration of loyalty to Terri’s wishes.
PERHAPS WE CAN FASHION better laws or better procedures to ensure that vulnerable persons get the care they deserve. But even truly loving caregivers will face hard decisions–decisions best left in their hands, not turned over to the state. And in reality, most decisions will be made at the bedside, where the reach of the law will always be limited, and usually should be. Moreover, the autonomy regime, at its best, prevents the worst abuses–like involuntary euthanasia, where doctors or public officials decide whose life is worth living. But the autonomy regime, even at its best, is deeply inadequate. It is based on a failure to recognize that the human condition involves both giving and needing care, and not always being morally free to decide our own fate.
In the end, the only alternative is a renewed understanding of both the family and human equality–two things ideological liberalism has now abandoned and modern conservatism now defends. Living in a family means accepting the burdens of caring for those bound to us in ties of fidelity–whether parent for child, child for parent, or spouse for spouse. The human answer to our dependency is not living wills but loving surrogates. And for those who believe in human equality, this means treating even the profoundly disabled–people like Terri Schiavo, who are not dead and are not dying–as deserving of at least basic care, so long as the care itself is not the cause of additional suffering. Of course, this does not mean that keeping our loved ones alive is our only goal. But neither can we treat a person’s life as a disease in need of a cure, or aim at death as a means of ending suffering–even if a loved one asks us to do so.
Perhaps we should not be surprised at the immovable desire of Terri’s parents to keep her alive and the willingness of Terri’s husband to let her go. Parental love and spousal love take shape in fundamentally different ways. Parents first know their children as helpless beings, totally dependent on their care. Husbands first know their wives as attractive, autonomous beings who both give and receive love, and who enter into marriage as willing partners. But to marry means pledging one’s fidelity despite the uncertainties of fortune. The beautiful wife may become disfigured, the wished-for mother may prove to be infertile, the young woman teeming with life may be plunged into a persistent vegetative state. Marriage often demands heroism, and we can hardly condemn those who fall short of it. But we can surely fault those, like Michael Schiavo, who claim to speak in the name of loved ones they have abandoned, and insist that letting them die is what they desire or deserve.
To question whether Michael Schiavo has his wife’s best interests at heart is not to make this case ethically or humanly easy. The decision to continue feeding a person in a profoundly incapacitated state is always wrenching. We must at least wonder whether ensuring years or decades with a feeding tube, with no self-control, and with virtually no possibility of improvement is not love but torture, not respect for life but forced degradation. We, too, must tremble when we demand that people like Terri be fed. But in the end, the obligation to feed should win out, because the living humanity of the disabled person is undeniably real.
On March 18, 2005, the day her feeding tube was removed, Terri Schiavo was not dead or dying. She was a profoundly disabled person in need of constant care. And despite the hopes of her parents, it was unlikely that her medical condition would improve, even with the best possible care administered by those with her best interests at heart. But even in her incapacitated state, Terri Schiavo was still a human being, a member of the Schindler family and the human family. As such, she was still worthy of protection and care, even if some of those closest to her wished to deny it.
—Eric Cohen is editor of The New Atlantis and resident scholar at the Ethics and Public Policy Center.
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