Schiavo autopsy points up need for end-of-life discussions

By PATRICIA LEFEVERE and ROBERT McCLORY

If facts matter, then some certainty has been established about the case of Terri Schiavo: She was in a persistent vegetative state, she could neither see nor swallow, there was no reasonable hope for improvement, and her husband, Michael, had not abused her.

Those findings of a June autopsy, which also showed that she died of dehydration, may answer some questions, but the report has also sparked a new flurry of disputes over her treatment. The most serious and emotionally laden is the claim that her feeding tube should not have been removed and that the decision to take it out constituted euthanasia -- legal murder. That is the view not only of Schiavo’s parents but also of a considerable number of other Catholic voices, including Richard Doerflinger, deputy director of the bishops’ secretariat for pro-life activities; Fr. Frank Pavone, head of Priests for Life; and some church officials in Rome.

On the other hand, many Catholic moral theologians insist Schiavo’s treatment was not murder in any sense but was consistent with a moral tradition that goes back some 400 years. They view the ongoing objections as an attempt to overturn that tradition in favor of a position that sets preservation of physical life above every other consideration.

“Catholic teaching does not require that everything that can be done must be done,” said Franciscan Fr. Kenneth Himes, chairman of the theology department at Boston College. “The church distinguishes between ordinary and extraordinary methods of treating illness, and the basis is always the benefit to the patient versus the burden of treatment to the patient and the family.” An intervention that may restore health or improve the patient’s condition and is not financially exorbitant is considered “ordinary” and should be used, said Himes. But when dealing with a person in a confirmed, persistent vegetative state, where it is morally certain there is no possibility of restoring or improving health (due, for example, to irreparable brain damage), almost any medical intervention, even a feeding tube, is considered “extraordinary.”

“There is no obligation to insert one,” said Himes, “and the person need not be dying in order to remove one [if one has already been inserted]. The aim here is not to kill the patient but to cease a fruitless, unnecessary procedure.” According to the principle of the double effect, what is chosen is a good, he said, namely the removal of a useless intervention, not the death of the patient. “Everyone would be delighted,” said Himes, “if the person would recover after a feeding tube is removed. Though death is foreseen, it’s not the intent.” Himes admitted that the distinction employed here is a subtle one, but it has been accepted by the church for centuries in hospitals, nursing homes and hospices, virtually without objection -- until now.

Timothy O’Connell, a moral theologian at Loyola University, Chicago, concurred with Himes, but added that people in a persistent vegetative state should be considered “already in the dying state.” When they cannot function or feed themselves, “they are in the dying process,” he said. “If they can resist the process, they should be assisted, but if not, the process need not be slowed down artificially.”

The facts fail to answer one of the most contentious questions in the case: “What did Terri want?” and that question is a central one said theologian Paul Wojda of the University of St. Thomas in St. Paul, Minn.

“Was prolonged life in a permanently unconscious state of value to her?” he asked. “The courts ultimately found clear and convincing the statements of Michael Schiavo and his siblings that Terri would not want her life so prolonged. Her parents vigorously disagreed. There’s no way the autopsy can settle this issue,” Wojda said.

On March 18 Florida State Judge George Greer ordered Schiavo’s gastric feeding tube disconnected. Thirteen days later, after spending 15 years in a persistent vegetative state, Schiavo died. Medical examiners released her autopsy last month, but drew no conclusion about what caused her to suffer sudden brain damage in 1990.

“The autopsy confirms what the doctors were saying all along -- the centers of her brain responsible for conscious thought and sight were destroyed,” said Jane Thibault, clinical gerontologist and associate professor of family and geriatric medicine at the University of Louisville Medical School. Thibault has worked with a team of geriatricians who sometimes care for older patients who suffer from diseases that place them in a persistent vegetative state.

Schiavo’s parents, Bob and Mary Schindler, had spent a dozen years opposing their son-in-law’s guardianship of his wife and had sought custody of Terri. The couple still maintains their daughter had responded to their voices and touch, and doubted she was blind, their lawyer said.

The evidence

Findings in the autopsy failed to dissuade many in the pro-life and the disability communities from their belief that a disabled woman was murdered. Rather the autopsy showed what pro-life advocates already knew, said Wojda.

“Terri was a severely disabled, and thus vulnerable human being, who deserved our loving concern and the protection of the law. If anything, the autopsy confirms she died of dehydration -- not a natural death -- since food and water were deliberately withheld.”

But Wojda said the autopsy might damage the right-to-life argument, at least politically. “The evidence discredits many of the factual claims that Terri’s parents and other pro-life advocates were making, and to that extent also casts doubt on the reliability of claims more central to their case,” he said.

“If they were so wrong about Terri’s physical condition, might they not also be wrong -- perhaps willfully blind -- to what her wishes were?” he asked.

The video viewed over and over by millions around the world of a dark-haired, middle-aged woman apparently tracking the movement of a balloon with her eyes was instead an automatic movement -- common to many in this condition -- and not a conscious response to stimuli, Thibault noted.

What Terri Schiavo’s parents hoped, saw or claimed was probably more a “projection,” said Sidney Callahan of the Hastings Center in Garrison, N.Y. “They read into these movements what we hope and wish ourselves,” she said.

“For a Catholic these facts will make a difference,” Callahan predicted, adding that the autopsy disclosed that Schiavo’s brain was so atrophied and its damage so irreversible that whatever one did for her would have no future benefit.

In such cases is artificial feeding to be considered care, nourishment or therapy? If it is given to “maintain the body, is this really progress in terms of human dignity?” she asked, adding that 50 years ago such maintenance was impossible.

“The church has always allowed for the withdrawal of extreme measures,” she said.

She said she hoped the autopsy findings would engage ethicists and the public around such pertinent questions as when it is permissible to withhold treatment and what constitutes “ordinary” and “extraordinary” means. Callahan will be discussing these issues with medical residents at St. Vincent’s Hospital in Lower Manhattan later in July.

For philosopher and ethicist Stephen Heaney of the University of St. Thomas in St. Paul, Catholic teaching explicitly forbids deliberately bringing about the death of any innocent person, he said, referring to the Catechism of the Catholic Church and to Pope John Paul II’s declaration on euthanasia in Evangelium Vitae.

Heaney called the removal of Schiavo’s nutrition and hydration equipment “a case of deliberate killing,” and said that no one arguing for its removal in court “made any attempt to disguise it as anything else but bringing about Schiavo’s death.”

Heaney said he thinks it would be “morally wrong” to refuse the tubes that deliver nourishment when they “benefit rather than burden” the person. Although no one has to receive nutrition and hydration by tube or by any other means if one’s body is incapable of receiving or processing the nutrition -- as when death is imminent -- “this was not the situation for Schiavo,” he said.

Confusion among Catholics

If ethicists are divided on such end-of-life matters, so too is the public. Confusion among Catholics is evident across the country said a number of biomedical ethicists and health care practitioners with whom NCR spoke or conducted e-mail interviews.

“Many Catholics are hearing: ‘No, you can’t do that; you have to live forever,’ ” said Wojda, who has been speaking to priests and laity of the St. Paul and Minneapolis archdiocese over several weeks and conducting workshops on living wills.

The theologian said he has been approached by people who were “visibly shaking,” because they have indicated in their advanced directives that they don’t want a feeding tube inserted should they lapse into a persistent vegetative state. “I assure them that there is nothing to prohibit a Catholic person in good conscience from making such a choice.” But Wojda added that not all Catholic theologians or bishops agree.

At the Center for Practical Bioethics in Kansas City, Mo., staff members raise and respond to complex ethical issues in health care, especially end-of-life concerns. The center’s clients comprise academic and health care institutions -- including Catholic hospitals -- as well as individuals.

A number of bills are expected to emerge from legislative committees in states dealing with questions raised in the Schiavo case, said Terry Rosell, a program associate at the center. Preliminary drafts indicate these bills would restrict further the withholding or withdrawal of artificial nutrition and hydration.

“That may not be good,” Rosell said. “Religious conservatives have been stirring up the faithful with stated goals of restricting the judiciary or removing from the bench certain ‘activist judges’ disinclined to do the conservative will,” he said.

Rosell said he hoped the medical findings would “diminish the tendency to pass along bad information” and to conduct “senatorial diagnosis” as happened in the Schiavo case. But with or without the autopsy, “polarization will continue” around the issue, he said.

In recent months thousands of people have downloaded the guidelines for advanced directives that appear on the center’s Web site. But people ought to go beyond the paperwork and “have that caring conversation” with loved ones and caregivers while there is still the time to do so, Rosell said.

The optimal situation for family and caregivers is having a person who can say what he or she wants. Working with advanced directives written by the patient prior to his or her incapacitation is likewise of great value, he said.

In cases where neither of these avenues is open, Rosell said judgments about care should be based on one’s knowledge of the person and in keeping with his or her values.

Finally, he suggested applying the Golden Rule and asking: “What would reasonable people think should be done or what would I want done if I were in a similar condition? Maybe all we have left is the ethic of reciprocity or the Golden Rule,” said Rosell, an ordained American Baptist minister and an associate professor of pastoral theology -- ethics and ministry praxis -- at Central Baptist Theological Seminary in Kansas City, Kan.

Rosell noted that several hundred people have been given “the Golden Rule” test, including many of his family members and students. Despite professing vehement support for the continuation of life supports in the case of patients in a persistent vegetative state, Rosell said he has yet to find a single person who has volunteered to have tubes and a respirator attached to themselves in order to prolong their life were they to become permanently incapacitated with no prospects of improvement.

Rosell hopes to practice what he preaches. “As a Christian I lived my life and will die with regret that I have not sufficiently shared my resources,” he said. So out of a sense of “distributive justice,” he does not want his caregivers to expand services beyond those that will keep him comfortable in the last stages of his life.

Rosell and other ethicists pointed to the example of Pope John Paul who in the final week of his life chose to die at home without any infusions for his heart or the use of a heart pump or ventilator.

In her gerontology practice, Thibault has seen patients who were “detained from union with God” because of the needs of the caregivers. She recalled a woman who wanted to keep alive her 80-year-old husband, who was in a vegetative state, because she was dependent on his pension, which would stop at his death.

Thibault thought the issue of keeping a loved one alive at any cost will become “significant as baby boomers age.” But she also noted that sometimes people need a little more time to hold on to their loved one to come to terms with their loss, especially if the cause of brain death has been sudden -- as opposed to death by dementia.

A real danger, she warned, is the specter of a person who is permanently disabled or both physically and mentally incapacitated being treated as if they were in a persistent vegetative state. That is one of the reasons why the disability community joined ranks with many in the pro-life, Catholic and Evangelical communities in the Schiavo case.

A resurrected life

People with permanent disability or mental incapacitation, whose brains are not dead, who have some recognition of their own existence and have some capacity for experiencing pleasure -- even if slight -- and who are not terminally ill do not live in a vegetative state as Schiavo did, she said.

One of the principles of our faith is that we are living into a resurrected life, Callahan said. Christians hold: “This isn’t all there is.” That belief should help us say “no excessive clinging to physical life when there’s nothing else there,” she said.

The “sense of animus” that the Schiavo case has generated in political, religious, medical and even family circles is a result of the anger and bitterness over euthanasia, Callahan said.

The whole discussion of end-of-life care has been complicated by a speech given by Pope John Paul II in March 2004 at a congress sponsored by the World Federation of Catholic Medical Associations. In it he said feeding tubes should be considered always an “ordinary means” of preserving life and therefore always morally required regardless of their ability to improve health. Clearly, the pope was using “ordinary” in a far different sense than it is understood in the Catholic tradition, but his words stirred pro-lifers. Doerflinger, among others, said here was a clear, indisputable moral teaching at the highest level of the church, overturning the traditional one.

Fr. Himes of Boston College disagreed. “The speech was given to a specialized audience on a specialized occasion,” he said, “and there has been no follow-up on it in Rome since. It has little or no doctrinal weight.” Nevertheless, in view of the controversy surrounding the entire Schiavo affair, Himes predicted the issue of end-of-life and persistent-vegetative-state treatments will come up for a clarification by the Congregation for the Doctrine of the Faith in the near future.

The Catholic moral tradition in end-of-life matters has proven “amazingly helpful” in the past, moral theologian O’Connell said. If occasional comments seem to contradict it, “they should be sorted through,” he noted, “but it would be unwise to overturn this wise tradition.”

Patricia Lefevere of New Jersey and Robert McClory of Chicago are longtime contributors to NCR.

National Catholic Reporter, July 1, 2005