The Schiavo Factor

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A few days after the death of Terri Schiavo, a group of friends in Madison, Wis., met to talk about how to control the medical care they could receive in the last stage of their lives. "I had 19 people and one dog in my living room," says Kay Heggestad, M.D., chair of the ethics committee of the Wisconsin Medical Society and a specialist in the care of the dying. "Only one person there had actually taken legal steps to ensure that his wishes are carried out. Everyone wants to know how to avoid what happened in the Schiavo case—but the answer is anything but cut-and-dried."

One reason there’s no simple answer to the question is that decisions about end-of-life care are governed by a crazy quilt of laws that vary from state to state. And the highly charged, highly public conflict over Schiavo’s care may produce still more regulations—even though families nearly always resolve questions of life support on their own. In the case of the brain-damaged Schiavo, who had no written end-of-life instructions, her relatives quarreled over whether to prolong her life in what most doctors called "a persistent vegetative state." After a protracted battle, the courts upheld the husband’s right to remove Schiavo’s feeding tube.

Much of the impetus in the states and Congress for action on end-of-life care comes from the Christian right, which wants, to paraphrase President Bush, to err always on the side of life, and from advocates for the disabled who want assurances that life support would not be withdrawn for purely financial reasons. While some states simply want to make advance directives for care more widely available, others are weighing proposals that would specify who has the right to stop nutrition and hydration when a patient has left no written preferences, and under what circumstances.

A proposed measure in Alabama, for example, would prohibit the withholding of food and water from patients like Schiavo. In Kansas, the House of Representatives hastily passed a bill that would require all guardians to obtain court approval to withdraw support if a patient left no instructions, but the proposal then stalled in the state Senate.

In Missouri—where the Nancy Cruzan case attracted national attention in the 1980s when her parents sought legal authority to remove a feeding tube after an accident left Cruzan in a persistent vegetative state—one bill would prevent anyone, in any circumstances, from withdrawing a feeding tube without an advance directive from the patient. And in Michigan, Rep. Joel Sheltrown, D-Detroit, announced his intention to introduce a bill that would bar any husband or wife who had an affair from making medical decisions for a spouse.

Dianne Bartels, associate director of the Center for Bioethics at the University of Minnesota, predicts that legislators may have second thoughts after the furor over the Schiavo case cools off. "One of the things we’ve learned from this truly sad situation," she says, "is that people don’t want the government making such personal decisions for them. Most people have a lot more confidence in their loved ones than they do in some legislator who doesn’t know them." Indeed, polls showed that more than 80 percent of Americans disapproved of Congress intervening on behalf of Schiavo’s parents to force the reinsertion of their daughter’s feeding tube.

Some states are grappling with how to resolve disputes between doctors and families over life support. Three states—Texas, California and Virginia—already have enacted so-called "futile care" laws in which doctors and hospital ethics committees who see no hope for a patient’s recovery can overturn the decisions of family members. Ironically, the Texas law was signed in 1999 by then-Gov. George W. Bush, who supported congressional action in the Schiavo case.

"These laws are partly a response to unrealistic expectations raised by medicine itself," Bartels says. "Some people, for instance, have read about stem cell research and believe that a cure for Alzheimer’s disease is just around the corner instead of decades or generations away."

The Texas law, which requires extensive consultation among relatives, doctors and the hospital’s ethics committee, says Thomas W. Mayo, associate professor at Southern Methodist University School of Law and an author of the law, was actually designed to keep people out of court. If the dispute is not resolved, however, relatives still have 10 days to find a long-term care facility that will accept the patient before the hospital can remove life support.

Just such a case was resolved in March after doctors concluded that Spiro Nikolouzos, 68, of Houston could not recover from his illness. The family disagreed and found a nursing home that would accept him and keep him on a ventilator.

In states without such laws, doctors frequently comply with the family’s wishes for fear of being sued—and court battles can ensue even if a patient has made his wishes clear in writing. Last fall in Orlando, Fla., Alice Pinette demanded that her 73-year-old husband, Hanford, remain on life support even though he had specifically rejected such measures in his living will. A judge took the hospital’s side because Pinette had left an advance directive.

The Pinette case illustrates yet another gray area of state law—the question of who has the final say when a patient’s own written wishes conflict with those of a relative. Although Pinette signed a living will in 1998 and gave his wife the legal right via a health care power of attorney to make decisions, she could not bring herself to carry out his wishes.

While many states allow people to make medical decisions for incapacitated spouses even if they provided no written directive, Wisconsin requires the appointment of a legal guardian in such instances. The guardian may be the spouse, another relative or an unrelated person. "I've seen it many times," Heggestad says, "spouses absolutely distraught upon being told they do not automatically have the right to make decisions but must go to court to establish guardianship." In most cases, she says, Wisconsin law does ultimately uphold the right of spouses to determine end-of-life care.

Whether states—and Congress—can, or should, devise one-size-fits-all legislation for such complex, personal decisions is uncertain at best. For one thing, lawmakers have little information to go on. In the early ’60s, the National Institutes of Health began conducting an annual survey describing how Americans die—but the survey was suspended in 1993 because of budget cuts.

Even experts on end-of-life issues don’t know how often disputes over care are unresolved. June Lunney, associate dean of the West Virginia University School of Nursing and lead author of a 2003 study, Describing Death in America: What We Need to Know (National Academies Press), says there are other unknowns. Patient preferences, for example, are not tracked, Lunney says, nor are the number of people who are forced to stay on life support against their expressed wishes.

"If laws are based on unsupported assumptions," Lunney says, "then they won’t meet people’s real needs."

In the end, what patients and their families do to prepare for a medical crisis is likely to matter more than legislated solutions. "There is absolutely no substitute for talking about what you really want with the person who is going to be making decisions if you can’t make them for yourself," Heggestad says. "Laws change, medicine changes, the course of an individual’s final illness is unpredictable. But if you’ve been honest and clear with the people you love, you’ve done the best you can."

Susan Jacoby is a journalist and the author of Freethinkers: A History of American Secularism (2004).