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Right to stay alive: Who decides?

By Staff writer of The Christian Science Monitor / February 28, 2005

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.

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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."