Wrestling with the final call
When it comes to end-of-life decisions, taking an ethical path isn't always easy
In the United States over the past 20 years, for better or for worse, something like a consensus--medical, ethical, and legal--has come to inform the handling of patients diagnosed as being in a "persistent vegetative state," or PVS. In hospitals and hospices across the nation, the families and attending physicians of such patients (ranging in various estimates from 10,000 to 35,000) typically confer, sometimes with a panel of ethicists or other physicians, to determine whether these patients should continue to receive treatment and sustenance.
If the patient's wish not to receive such care has been established in a directive or in words spoken to a family member, a decision is usually easily arrived at. Receiving no further medical treatment or tube feeding, the patient slowly dies. Cases in which there are no clear directions are more difficult, though many end with family or guardians concluding, sometimes after a few years, that keeping the patient alive is pointless. (About 85 percent of all adult PVS patients die within five years of incapacitation, though it is not clear how many do so as the result of suspended care.)
In some very few cases, though, the families disagree among themselves about whether support should be suspended. Those disputes typically end up in court. Or, in the case of Terri Schiavo, not just in state and federal courts but in state and national legislatures--and, indeed, on just about every television screen in America. But for all the emotion that it now generates, will the controversy over Schiavo's fate shatter the ethical consensus over the management of patients in a vegetative state?
Answers vary, of course, depending on what kind of expert is asked. Most physicians and bioethicists remain confident in the consensus that began to take shape with the 1976 court ruling on Karen Ann Quinlan, bolstered by subsequent court rulings dealing directly with the removal of feeding tubes. In a recent survey of 900 physicians conducted by HCD Research and the Jewish Theological Seminary's Louis Finkelstein Institute for Religious and Social Studies, 77 percent responded that it was "medically ethical" to remove Schiavo's feeding tube. Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania, believes the consensus will survive "because it has basically functioned well."
Divisions. Other ethical thinkers, including many philosophers, religious leaders, and theologians, say that the fissures run far deeper because they result not just from the peculiarities of a difficult case but from questionable assumptions about the status and care of PVS patients in general. At its crux, they say, the question is whether removing a feeding tube is simply part of suspending extraordinary medical measures that keep the patient alive or whether it is withholding basic care in a way that causes death.
To be sure, framing the question that way does not in itself produce instant moral clarity. "As I understand Jewish tradition, there is a murkiness," says Alan Mittleman, director of the Finkelstein Institute. "You are not supposed to do anything to hasten death, but, on the other hand, there is no need to do anything to artificially prolong life." At the very least, in Mittleman's view, that murkiness should give more people, and particularly more physicians, pause. "I would hope that a tragic case like this would make us more mindful of what our God and community expect of us," he says.
Many religious leaders and theologians, from Pope John Paul II to the Southern Baptist Convention's Richard Land, enjoin the faithful to reflect more on what they stipulate in their medical directives. "The law recognizes the right of a competent patient to direct the withholding or withdrawing of any intervention, including the provision of food," says Focus on the Family's James Dobson. Accepting the legality but questioning the morality of that right, he fears that "people are confused about what is morally appropriate and frightened by the prospect of being disabled."
Although there is a clear diversity of interpretation within faith traditions, the Schiavo case might make it harder for differing views to continue to coexist quite so easily. The Rev. John Paris, S.J., a Roman Catholic priest and professor of bioethics at Boston College, says that the removal of an artificial feeding tube is consistent with 400 years of Catholic teaching on the use of extraordinary means to preserve life. He says that his view is reflected in the practices of American Catholic hospitals. But other Catholics vigorously challenge Paris's claims. John Haas, president of the National Catholic Bioethics Center, points to the March 2004 comments of Pope John Paul II directed specifically at the care of PVS patients. In them, the pope instructed that "the administration of water and food, even when provided by artificial means, always represents a natural means of preserving life, not a medical act." And he elaborated that their suspension can only properly be described as "euthanasia by omission."
As for the Catholic Health Association of the United States, which represents America's 611 Catholic hospitals (more than 10 percent of all U.S. hospitals), its official statement on ethical issues raised by the Schiavo case says that decisions about suspending life-sustaining treatment "are made by assessing the potential burdens of the treatment in proportion to hoped-for benefits relative to the patient's condition and from the patient's perspective." Whether that represents a full or modified embrace of the pope's position, ethicists inside and outside the church disagree. But even someone as sanguine about the current consensus as Caplan worries that the Vatican's recent pronouncement "will put a chill on removal of tubes in Catholic hospitals."
It is not easy to say where most religious Americans stand on the Schiavo case and its ethical implications. But clearly a significant number--particularly evangelical Christians--line up firmly behind the thinking of ethicists like Gilbert Meilaender, a professor of theology at Valparaiso University and a member of the President's Council on Bioethics. "It's not clear that this is a dying patient," he says about Schiavo. "You are not letting her die; you are seeing to it that she does." But beyond the specifics of what he calls a "bad case," Meilaender is hopeful that the controversy will move the nation away from what he views as a "convenient" consensus about the removal of feeding tubes from PVS patients. If the result is an ethical uneasiness, it is preferable, he and many religiously minded ethicists hold, to a dangerous complacency.
This story appears in the April 4, 2005 print edition of U.S. News & World Report.