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November 04, 2003 Volume 39 Issue 40
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OPINIONS / ETHICSOPED: Current bioethics couldn't help Terri Schiavo
The Florida woman, diagnosed with persistent vegetative state, had her feeding tube removed at the request of her husband–but against the wishes of her parents. At the 11th hour, the tube was reinstated by court order
By Colleen Clements
It had seemed likely that by the time this column was read, the case of Terri Schiavo would have come to its tragic end, both for her family and for ethics. My hopes for the continued existence of Mrs. Schiavo, who suffered from persistent vegetative state (PVS), and the relevance of ethics in U.S. society had been dashed after the Florida State Supreme Court had refused to hear arguments against Circuit Judge George Greer's decision ordering the removal of Mrs. Schiavo's stomach tube and her death by starvation on Oct.15.
Unfortunately, a Federal Court had also refused to allow the case to be transferred, blocking that avenue of appeal. Although Governor Jeb Bush's office had e-mailed me a copy of his Amicus brief to Federal Court filed that week, the Court did not consider it seriously. Gov. Bush sent me a second message on Oct. 15 regretting that his lawyers could find no legal redress, and regretting it was his duty to support the legal decision and citizens' "right" to be removed from nutrition and hydration when in the brain-damaged state of PVS.
On Oct. 19, I sent another e-mail to the governor's office, as a last plea to consider some intervention in this case. A few hours later, I was happily surprised to hear that Gov. Bush had supported the introduction of a bill in the Florida legislature to grant him the power to intervene on Mrs. Schiavo's behalf. The Florida legislature, in a rapid vote, passed the bill, declaring their intent of the previous legislation on withdrawal of food and water had been misread by the legal system. Gov. Bush then ordered that nutrition and hydration be restarted, and at the last minute Terri Schiavo's life was saved.
This has been a long, complex case raising the ethics of nutrition and hydration removal, and the dangerous standards requiring rehabilitation of patients with PVS. Mrs. Schiavo, 39, has been brain-damaged for 13 years since she collapsed in 1990 at her home in St. Petersburg, Fla. She received little rehabilitative treatment, but a feeding tube was placed, although Mrs. Schiavo can control her saliva through swallowing and does not drool. She was a candidate for oral feeding, but since such feeding takes staffing time, it is not as cost-effective as tube feeding. Tube feeding is then seen as a life-prolonging medical treatment to be removed if there is clear and convincing evidence of the patient's wishes, or if there is a family request.
In 1998, Mrs. Schiavo's husband petitioned a probate court to allow him to stop his wife's feeding, and the long legal road began. In a court trial in 2000, Mr. Schiavo testified that his wife, seeing her grandmother on a ventilator in a nursing home, had said she would not want to be a burden to anybody or to live like that. Her husband's brother also testified to that, along with a sister-in-law. The judge accepted this version—although her parents objected—and then rejected the affidavits of almost a dozen physicians who said Mrs. Schiavo is not a PVS. Instead, the judge accepted the evaluation of two neurologists who said she is a PVS, one of whom was an activist in the right-to-die movement. The lawyer for the husband is George Felos, who considered one of the criteria for personhood to be the capacity to move a spoon to one's mouth.
Felos characterized allowing Mrs. Schiavo to live as poor public policy: It seems Western legal systems have replaced the justice standard accepted since Aristotle with the cost-efficiency standard. The state courts were consistent. Judge Greer was legitimized by the Court of Appeals as the surrogate or proxy to make decisions about life-prolonging measures. It thought the trial judge had clear and convincing evidence that Mrs. Schiavo would wish to let nature take its course (a natural death) and allow her family to continue their lives. There was no hope of medical cure, they ruled, and judges could make life-and-death decisions as a result. Mrs. Schiavo's family then appealed to the Florida Supreme Court, but it refused to hear the case. Judge Greer rejected the parents' request to take their daughter home and care for her. This is a case created by the new bioethics. Can bioethics, then, be of any help here?
My regretful answer would be no, for the following reasons:
• This case followed to the letter of the law the methods in place for bioethics. There was no procedural error, although there were lots of other errors.
• Bioethics refuses to define what is "the good" for man, as classic ethics did. It assumes there can be no rational answers to the question of what is the good. That is why it focuses on regulations, committees, institutional review boards and legal procedures. But the Hippocratic tradition explicitly required that we define a good outcome for the patient. It was not the good of social resources (that argument can be used only in developing countries). It was not public policy. It was the good outcome for the patient. Nor did it matter what diagnosis or prognosis the patient had.
A persistant vegetative state, profound mental retardation, a brain-damaging genetic disease, dementia, encephalitis could not place the patient in a special group that could be terminated.
• Without traditional ethics, the definition of key terms slides away. What is medical futility? What in the world is good public policy? Who is a member of the ethical community? What respect and worth are innate in being human? Is PVS good science or a weasel word that allows us to think of patients as vegetables? What standards does a guardian have to meet? Bioethics as presently done can give arbitrary answers to these but not good arguments, because the philosophic systems from which such answers and arguments come are dismissed as culturally relative or irrational.
• The bureaucratizing of bioethics means we are silent in the face of evil and of good, that we watch the killing of certain groups of patients without their clear and written consent, without protection from conflicts of interest that guardians may have, without safety from the pressures of economic first-order decisions, without standards of expert behaviours.
Current bioethics couldn't help Terri Schiavo and her family. It only helped water down the meaning of "clear and convincing evidence" of her assumed choice. As exemplified by her case, our society and our medical profession is in need of some help from the abuses of bioethics. A few years ago, at a conference in Toronto at which I was a presenter, one of the other speakers pointed out the average person was not eagerly signing advanced directives or living wills. The numbers, he said, were "too low." I hadn't realized we had a quota until that day.
My colleague recommended we add medical futility to the bioethics argument for terminating people—in order to terminate more of them, it seemed to me was the implication. The futility/utility axis—we've come to it. No one, including the courts, cared that the U.S. Supreme Court decisions in Cruzan (requiring clear and convincing evidence for removal of care) or in Quill v. Vacco (refusing to create a constitutional right to die) had been twisted beyond the plain meaning of those decisions.
A governor felt helpless. Parents of the patient felt helpless. Physicians bureaucratically performed their ordered function. The precedent for killing patients with the unscientific and new diagnosis of PVS was almost established for the state of Florida.
My hope is that Canadian society will not copy the U.S. and go down this terrible road, cloaked ironically under the guise of ethics—but bent on the destruction of real ethics.
Colleen Clements is clinical associate professor of psychiatry at the University of Rochester, Rochester, N.Y.; clementsebooks.com.
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