Right to stay alive: Who decides?

Terri Schiavo passed her 15th year last Friday in what doctors call an awake but unthinking state, unaware of the latest melodrama swirling around her hospital bed in Pinellas Park, Fla.

Her case has drawn international attention because her husband and parents disagree on whether to disconnect her feeding tube. But underlying the case are two ethical dilemmas that courts thought they had solved:

When does one end life-extending treatment for such patients? And who gets to decide?

Because Ms. Schiavo left no written living will or medical directive, everyone from doctors and state agencies to local judges, the United States Supreme Court, and Florida Gov. Jeb Bush have weighed in. Her husband, Michael, says she would have wanted to die a natural death. Her parents, Bob and Mary Schindler, want their daughter to continue to receive tube feeding, arguing that her condition might improve. On Friday, a judge granted Mr. Schiavo permission to have her feeding tube removed March 18. Florida Circuit Court Judge George Greer said it was time for the lengthy legal saga to end, but the parents are expected to seek new delays in other courts.

These cases don't belong in the public arena, says the Rev. John Paris, a bioethicist at Boston College and an expert on right-to-die issues. "The tabloids are making a joke of the whole thing. These are difficult, serious problems."

Every day in the US, patients and family members, after consultation with doctors and perhaps a religious adviser, quietly make difficult choices about ending life-prolonging medical care in cases deemed incurable. But changes in medical technology and other factors have turned the debate on its head, say religious scholars and ethicists.

In the 1970s and '80s, courts became involved when relatives fought for the right to end medical treatment for such patients. In 1990, the US Supreme Court heard the case of Nancy Cruzan, whose parents sought to discontinue her medically assisted tube feeding. While the court did not rule in their favor, it did establish that such action is legal as long as "clear and convincing evidence" of the patient's wishes could be determined.

Now, more and more families and religious groups are pressing hospitals to continue life-preserving medical measures long after doctors believe a medical cure or even improvement is possible.

In Houston, Wanda Hudson is seeking to have her 4-month-old son kept on mechanical ventilation and tube feeding against the wishes of his doctors, who say he is suffering and slowly suffocating, with no possibility of recovery through medical means. If the hospital wins, it will be the first time a US court has decided in favor of ending life support for a living infant, Father Paris says.

Three changes give rise to these cases, he adds: new medical technologies that keep patients alive but can't reverse the underlying disease; the general breakdown of trust in institutions and authority figures, such as hospitals and doctors; and the shift of payment for medical services from patients and family members to insurers or the government.

For children with parents diagnosed as being in a persistent vegetative state (PVS), "the value of clinging onto mother and keeping my conscience clear is very high, and the dollar cost to me is zero," Paris says. "So [I want the hospital to] keep going."

In the past, courts and ethicists have largely agreed that tube feeding is a medical treatment, and that removing it does not cause suffering. Thus it could be stopped with the consent of patients or their proxies. But Schiavo's parents and many advocacy groups argue that tube feeding constitutes basic humanitarian care that would be cruel to end. Leaders from many religious denominations, such as the Lutheran Church-Missouri Synod, and antiabortion groups agree.

"Everything in medical science advances," says Jim Sedlak, vice president of the American Life League, an anti- abortion group in Washington. "Today providing a feeding tube is a normal type of thing, it is not an extraordinary type of thing. She is alive. She is a live human being, and we have an obligation to provide any live human being with food and water."

Relatives sometimes see patients diagnosed as in PVS blink, move their eyes, or make other movements that suggest they are responding to their surroundings. Doctors say this is misleading and that no thought process is taking place.

PVS is like seeing snow on your TV set, says Arthur Caplan, chairman of the medical-ethics department at the University of Pennsylvania. "It's on, but there's no signal at all." While the case troubles some advocates for the disabled, Dr. Caplan doesn't agree. "When you get to Terri Schiavo's situation, calling her 'disabled' starts to stretch the concept because she's pretty much in-abled or un-abled," he says.

"[Schiavo] is what some people may call a 'nondead, nonperson,' " says D. Dixon Sutherland, a bioethicist, theologian, and director of the Institute of Christian Ethics at Stetson University in DeLand, Fla. "Her personhood is gone, but by medical definition, she's still alive."

Schiavo is a Roman Catholic, but even within that religious denomination opinions vary toward patients in her condition. Last year, Pope John Paul II said that patients "in a vegetative state had the right to basic sanitary assistance - food, water, and hygiene," even if there is "scarce hope of recovery." But Paris says that declaration stands "wholly against 400 years of consistent Catholic moral analysis of these issues." While bishops in states such as Massachusetts, New York, New Jersey, and Pennsylvania have embraced the pope's position, others in Washington, Oregon, Florida, Iowa, and Rhode Island have not actively taken up the cause, he says.

Right-to-life groups feel they have "a kind of religious mandate [to show] that human life on any terms is sacred and has to be preserved," says Dr. Sutherland, a biblical scholar. But he doesn't see any precedent in the Judeo-Christian tradition. "The Christian tradition has never focused on the preservation of life for life's sake in this kind of radical way," he says. "There is no mandate that we keep human bodies alive as long as medically possible, technologically possible. That is not what our obligation is as human beings to ... loved ones. And it's not our goal in life or purpose in life as Christians."