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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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"If following a legal procedure will likely result in Terri dying, it will be adhered to. But if a procedure could make that outcome more difficult to attain, it will not be followed."
Read what Pat Anderson, Terri's attorney, has to say in Wesley J. Smith's latest (and possibly greatest) Weekly Standard column on Terri (no URL at this time):
What we can learn from the Schiavo case.
by Wesley J. Smith
01/19/2004, Volume 009, Issue 18
IT IS THE CALM before the storm in the Terri Schiavo case. The Florida woman, who was in the throes of a court-ordered death by dehydration last October when Florida's legislature and Governor Jeb Bush intervened, continues to receive tube-supplied food and water. But this good news may not last. In December, as her family and many supporters celebrated her 40th birthday, their joy was tempered by the knowledge that powerful cultural forces are adamant that Terri Schiavo not live to see age 41.
The Schiavo case was one of the most important stories of 2003. The big news wasn't that she was ordered dehydrated to death: Conscious and unconscious cognitively disabled people like Terri are often denied tube-supplied food and water in America's hospitals and nursing homes. What made this case remarkable was the successful public campaign mounted by Terri's parents Bob and Mary Schindler to prevent their daughter from suffering a slow and potentially agonizing death. As a result, millions of people awakened to the ugly reality that we treat helpless humans in a way that would be criminal if done to a horse.
When more than 100,000 people contacted Florida governor Jeb Bush demanding that he intervene and save Terri's life, the result was the passage of "Terri's Law," a measure that permits the governor to suspend the removal of a feeding tube from patients (a) who do not have a written advance directive instructing that they not be nourished and (b) whose families disagree with the decision to dehydrate. Bush acted and Terri's food and water were restored.
But Michael Schiavo, Terri's quasi-estranged husband--he's lived with another woman for several years and has two children with her--remains adamant that Terri die. Assisted by the American Civil Liberties Union (ACLU) and cheered on by the bioethics establishment and media, which view the case through a distorting "right to die" prism, Michael Schiavo sued to have Terri's Law declared unconstitutional. If he succeeds, Judge George Greer of Florida's Sixth Judicial Circuit will undoubtedly order Terri's feeding tube removed as he has done twice before.
As we await further court proceedings, it is a good time to take stock of the case, clear up some common misperceptions, and see whether anything can be done to prevent future Terri Schiavos.
The Myth of 19 Judges: Supporters of Terri's dehydration often argue that Terri's rights have been fully protected through extensive judicial oversight. Michael Schiavo put it this way on "Larry King Live": "Nineteen judges have come to the conclusion that this [dehydration] was Terri's wish." His attorney George Felos then added, "This case has gone from the trial court to the appellate Court to the Florida Supreme Court, to the U.S. Supreme Court, to the Federal District Court. All of those judges have looked at this case, have looked at the facts, and have found that Mike acted properly."
Well, bunk. The case has been shunted back and forth between the Sixth Judicial Circuit Court and the Florida Second District Court of Appeal, where the rulings have been repeatedly replayed like a looping audio tape. Only one trial judge and one appellate court actually reviewed the evidentiary record. Moreover, contrary to Felos's assertion, the Florida Supreme Court and the U.S. Supreme Court did not look at the facts. Rather, both declined to review the case. Refusing to rule is not the same thing at all as studying the record.
This is a crucial point because many important and highly relevant facts have never been fully litigated. For example, because the Schindlers could not afford to hire a neurologist to examine Terri at the time of the original trial, Judge Greer heard only one perspective about Terri's medical condition.
This situation has now changed. Several doctors and rehabilitation experts have signed affidavits asserting not only that Terri is conscious, but also that she could be weaned off her feeding tube with rehabilitation. Judge Greer refused to permit this evidence to be presented fully in open court, however, because to do so, he said, would be to retry the case.
But the case should be retried. A human life is at stake. And there are many other issues in addition to the heterodox expert medical opinions about Terri's condition that must be considered if justice is to prevail over mere legal procedure.
For example, Michael Schiavo was not cross-examined at the first trial about the two different stories he has told to two different courts, from which he wanted two different verdicts. When he wanted a money award from a medical malpractice jury, he presented evidence that Terri would have a normal life span, that she would need extensive and expensive rehabilitation throughout her life, and that he would provide her this care as long as he lived. (In cases such as this, the longer the patient is likely to live, the higher the award probably will be.)
Six years later, when he wanted his wife's feeding tube removed, he changed his story, contending that she told him she wouldn't want to live "on anything artificial." Surely, the credibility gap created by this 180-degree turnabout is worth considering, given that Michael's testimony and that of his brother and sister-in-law constituted the only evidence presented to Judge Greer that Terri would want to die.
There are other inconsistencies in Michael Schiavo's story: After the medical malpractice jury money was safely in the bank, he withheld antibiotics from Terri when she developed an infection. Because of this, the Schindlers sued to remove him as Terri's guardian. When Michael was questioned in a deposition about a conversation he had with a doctor about removing Terri's feeding tube, he testified, "I said [to the doctor] I couldn't do that to Terri." He also admitted that he did not want Terri to regain consciousness because he did not think it in her best interests.
There is also considerable evidence that would be presented in a new trial casting doubt on Michael's good intentions toward Terri. Several nurses who cared for Terri in the mid-1990s have come forward and signed sworn affidavits that are highly relevant to the dispute over Terri's medical condition and Michael's good faith. For example, the nurses testified in their affidavits that Terri was responsive and could even speak on occasion.
The affidavit of Carla Sauer Iyer, RN, is especially damaging to Michael's case. She testified that Michael refused medical recommendations that Terri be given therapy, insisting that "Terri should not get any rehab, that there should be no range of motion [therapy], whatever, or anything else. . . . One time I put a wash cloth in Terri's hand to keep her fingers from curling together, and Michael saw it and made me take it out, saying that was therapy."
Even more disturbing, Iyer has stated under penalty of perjury:
Throughout my time at Palm Gardens [Terri's former nursing home], Michael Schiavo was focused on Terri's death. Michael would say, "When is she going to die?" "Has she died yet?" and "When is that bitch going to die?"
Of course, Iyer's accusation should not be accepted at face value and should be tested by rigorous cross-examination. But so too should Schiavo's version of his disputes with care providers. He admits clashing with Terri's nurses, but claims he was angry because they were not providing her with good enough care.
These matters are sufficiently serious to warrant a thorough airing in a full-blown trial. This should be uncontroversial. After all, if Terri were a condemned murderer facing execution and factual matters of this import and relevance had not been adequately addressed in the original proceeding, the ACLU would never stop suing. Yet, even though Terri's case is just as much a death case as any murder proceeding, the ACLU wants Terri to die.
Unfortunately, the judges of the Sixth Judicial Circuit are not eager to face new facts. Indeed, Judge Greer's Sixth Judicial Circuit colleague, W. Douglas Baird, has now refused to permit Governor Bush's attorneys to conduct any factual discovery in the lawsuit over the constitutionality of Terri's Law.
This is to stack travesty upon travesty. Despite the general legal rule that laws are to be presumed valid when being challenged constitutionally, Baird instead declared Terri's Law "presumptively unconstitutional" before Governor Bush had even filed pleadings in the case. Such a statement at least presents a sufficient appearance of bias to require Baird be removed. Instead, the looping tape brought the controversy back to the Second District Court of Appeal, which true to form refused to order that Baird be disqualified. And now, even though Judge Baird has been transferred to a criminal court, he has nonetheless held on to the Schiavo case.
The Missing Guardians ad Litem: "I have never seen anything like the Terri Schiavo litigation," the Schindlers' attorney Pat Anderson told me recently. "I call it the 'Rule of Terri's Case.' If following a legal procedure will likely result in Terri dying, it will be adhered to. But if a procedure could make that outcome more difficult to attain, it will not be followed. It's the most frustrating experience of my legal career."
Bitter words from a lawyer who has, so far, lost her case? I don't think so. Consider the fact that Terri does not currently have a guardian ad litem who would be duty-bound to look out for her interests. This, despite a Florida statutory requirement that an ad litem be appointed whenever a conflict of interest may arise between a guardian and a ward, as it clearly has between Michael and Terri.
Terri once had a guardian ad litem, attorney Richard L. Pearse Jr. of Clearwater, Florida. But after opining before the trial that Terri's dehydration should not be permitted and further urging that she continue to be represented by a guardian ad litem, he was dismissed from the case and no replacement has ever been appointed. When the Schindlers appealed, the Second District Court of Appeal brushed their concerns aside, ruling in essence that Judge Greer could serve both as Terri's advocate and as a neutral arbiter of her fate. As a consequence, Terri was sentenced to die without having an unbiased, zealous advocate acting solely on her behalf.
The same pattern has now occurred under Terri's Law, which explicitly requires a guardian ad litem be appointed for a patient whose dehydration has been suspended by the governor. Accordingly, David A. Demers, chief judge of the Sixth Judicial Circuit, appointed health law professor Jay Wolfson to represent Terri and ordered him to review the case and report back to the court and to the governor within 30 days. Wolfson filed a 38-page report on December 1, 2003. While accepting Judge Greer's ruling that Terri is in a persistent vegetative state, he recommended that Terri be given a swallow test--she has not had one since 1992--opining that if she "has a reasonable hope of regaining any swallowing function," her feeding tube should not be removed. Wolfson also expressed his belief that "due process requires that the ward's interests continue to be represented in all further proceedings herein" by a guardian ad litem or "other appropriate fiduciary."
Judge Demers was having none of that. He thanked Wolfson for his report and dismissed him from further service. Thus, Terri is yet again being denied an advocate to call her own.
The Lack of a Legal Presumption for Life: The Terri Schiavo case shows the acute dangers posed to the most weak and vulnerable among us by the so-called right to die. We are now a society that too often gives the benefit of the doubt to death in cases such as Terri's. Terri's Law was merely a stopgap measure.
A more thorough and well-thought-out law is clearly needed. Such legislation has been filed in Florida. Senate Bill 692, to be considered in the 2004 session, would create an explicit legal presumption in favor of providing tube-supplied food and fluids to cognitively disabled patients. But this general rule would not be ironclad. The presumption would not apply for patients who had signed a written advance medical directive instructing that the tube-supplied sustenance be withheld if it "would not contribute to sustaining the incompetent person's life or provide comfort to the incompetent person."
Such a common sense law would strike a proper balance between the right to make our own medical decisions and the right to life of our most vulnerable citizens. It would also go far in preventing bitter intra-family litigation such as the Schiavo case that has roiled the nation in recent years. A just and compassionate society should accept no less.
Wesley J. Smith is a senior fellow at the Discovery Institute, an attorney for the International Task Force on Euthanasia and Assisted Suicide, and a special consultant to the Center for Bioethics and Culture.