The Legacy of Terry Schiavo

TERRI SCHIAVO IS DEAD. But her death by dehydration last week need not be in vain. Great good can still come from the harsh, two week ordeal she—and to a lesser extent, we—were forced to undergo by court order.

Terri’s story generated a torrent of compassion. (The root meaning of compassion is to “suffer with,” which is precisely what her legions of supporters did.) Hundreds of thousands of people who had never participated before in a major public event engaged untiringly in advocating for the sanctity and equal moral worth of the life of Terri Schiavo. And these many supporters were not, as the mainstream media took great glee in portraying, limited to the Randall Terry brand of religious activist or to orthodox Catholics. To the contrary, notables of the secular and religious left—Ralph Nader, Jesse Jackson, Nat Hentoff—joined in solidarity with their usual conservative opponents, such as President George W. Bush, Senator Bill Frist, and Rush Limbaugh, to declare that Terri should live.

This suggests that deep political divisions can be overcome, at least for a time, in pursuit of a public morality that was sorely missing in the Terri Schiavo saga. Indeed, if Terri’s supporters channel their passion into productive democratic reform, we can almost surely prevent future such miscarriages of justice.

What would such reforms look like? While great care should be taken in this important matter, here are a few initial suggestions:

• First, as it is the law of the land to prevent discrimination against disabled people via the Americans with Disabilities Act (ADA), then surely these protections should apply explicitly where they are needed most desperately, in medical situations where discrimination can have lethal consequences. Obviously, legislation would have to be carefully worded to prevent overreaching and unintended consequences. But disabled people need to be able to enter hospitals and other medical institutions secure in the knowledge that the law requires their lives be just as valued and protected as those of patients who are not disabled. As matters stand now, some disabled people fear hospitalization precisely because they worry that their lives will be judged as being of insufficient quality to be sustained. The Terri Schiavo case exacerbates those fears.
• States need to review their laws of informed consent and refusal of medical treatment to ensure that casual conversations—the basis for Terri’s death order—are never again deemed to be the legal equivalent of a well-thought-out, written advance medical directive. We don’t permit the property of the deceased to be distributed based on their oral statements; surely human lives deserve as much protection.
• If people don’t want feeding tubes if they become profoundly incapacitated, the law permits them to refuse such care. That isn’t going to change. But if that is their desire, they have the responsibility to make sure that such wishes are put in a legally binding document. Absent that, the law should require the courts in contested cases to give every reasonable benefit of the doubt to sustaining life and not causing death by dehydration.
• Along these lines, our laws should be more nuanced. When people claim they would want the “plug pulled,” many are worrying about being tethered to beeping machines in sterile intensive care units, not expressing a desire to be slowly dehydrated to death over 10-14 days. In the face of this potential misapprehension, we should create a distinction in law between food and water supplied through a tube and other forms of medical care. Withholding a respirator or antibiotics can lead to uncertain results. Take away anyone’s food and water and they will die.
• Judge George Greer’s embrace of Michael Schiavo’s legal status as “husband” to Terri in the face of the pronounced personal and financial conflicts of interest he faced in making her life and death decisions may not require an explicit change of law. But surely we have every right to demand that judges remain acutely sensitive to changes in circumstances that often emerge over time in situations faced by families like Terri’s. Why Judge Greer did not think it a matter of grave import that Michael had two children with another woman, even as he petitioned the court to hasten the day when death would part him from his wedded wife, will always be a source of bitter wonder to Terri’s supporters.

As Terri’s family made clear in their dignified public statement after her death, it would dishonor her memory for her supporters to indulge in hatred. Michael Schiavo, George Felos, and Judge George Greer aren’t worth the psychic cost. How much better to honor Terri’s memory by enacting a series of legal reforms that rededicate our society to standing for the equal moral worth and unwavering legal protection of the most weak and vulnerable among us.