What If It Happens In Your Family?

By Jeff Chu

The saga of Terri Schiavo has touched many Americans directly, prompting them to relive difficult decisions they've already made or can contemplate making. That the case became so celebrated, though, is a function of its atypicality. Relatives faced with a situation like Schiavo's, in which the patient has no living will, very often differ about what to do, physicians say, but rarely do the factions become so unmovable and determined to prevail as did Schiavo's husband and parents. Instead, one side usually gives in. Will the Schiavo case change that? Though Schiavo's parents were able to go to great lengths in challenging their son-in-law's decision to let Terri die, legal experts aren't convinced this will lead to many more courtroom disputes. Rather, they expect more Americans will now make their end-of-life wishes more explicit, and evidence of that is already emerging.

Dr. Gary Johanson, medical director of the Memorial Hospice and Palliative Care Center in Santa Rosa, Calif., says that when an incapacitated patient hasn't left a living will or designated someone to make his or her medical decisions, families agree on what to do anyway in about two-thirds of the cases his center sees. When relatives quarrel, he notes, it's typically over old baggage. "Maybe one person feels estranged [from the patient] and now feels guilty if they don't try everything."

When relatives disagree, compromise almost always comes when "those who wish to terminate care accede to the wishes of those who do not," says Dr. Kenneth Prager, director of the medical-ethics committee at New York--Presbyterian Hospital/Columbia University Medical Center. "People do not want to be looked at for the rest of their lives by other family members as having been responsible for the death of a loved one." Schiavo's husband Michael is unusual, Prager says, in his insistence on carrying out what he says were her wishes not to live in a vegetative state.

Who has the legal right to make decisions for an incapacitated patient varies by state (see map on page 30), but the reality of family dynamics is that those choices are often made by consensus. Health-care professionals who frequently deal with families in those situations offer two broad pieces of advice. First, "Everybody needs to hear the same thing" about the patient's prognosis, says Bruce Ambuel, a psychologist at the Medical College of Wisconsin in Milwaukee. "Otherwise you have different people hearing different things from different specialists at different times, and it just sows the seeds of conflict." Second, family members should go on a fact-finding mission to get a sense of a patient's probable desires. "Talk to as many people as possible who may know what they would have wanted, their good friends and loved ones," says Kathy Brandt, vice president of the National Hospice and Palliative Care Organization.

The Tighe family's fact-finding mission was relatively straightforward. Three years ago, Jimmy Tighe, then 48, of Cleveland, Ohio, fell down some stairs at his father's house and was knocked unconscious. The ambulance crew accidentally threaded a breathing tube into his stomach, leaving him without oxygen for the 12-minute ride to the hospital. When his brothers were told three months later that Tighe was in a persistent vegetative state, they mentally replayed conversations they had had about death four years earlier, after another brother had been shot and killed. "We all said, 'Don't put us on any life support,'" says Keith Tighe, 41. "Jimmy said it too." Still, it has taken time for the Tighes to act, as is often the case. Only in February, after Jimmy developed pneumonia, did the brothers and their father move him into a hospice and start the procedural steps required by the center before a feeding tube can be removed. In the meantime, the Tighes visit Jimmy every day.

Relatives often need time to sift through intense feelings and to say a long goodbye. Last September the family of Jill Rudolph, 41, of Toledo, Ohio, voted 5 to 3 to remove her feeding tube. She had been in a persistent vegetative state since May, when she suffered multiple strokes. Her mother Joyce Moran voted against removal. Years ago, Moran's brother-in-law had needed six months to emerge from a coma; what if Rudolph needed that time too? The family compromised, agreeing not to take immediate action. But by November, Moran had gone through an intense period of prayer, research and discussion with the doctors and her priest. On Nov. 8, doctors removed Rudolph's feeding tube but kept her on morphine. She died on Dec. 4. "My priest advised me to do the loving thing," says Moran.

Such trials can sometimes bring families closer. Marianne Svanberg, 88, a Swede, suffered a massive stroke while visiting her granddaughter Kim Gagne in Santa Rosa, Calif., in January, setting off a bitter generational row between Svanberg's daughters and granddaughters about whether to put her on a feeding tube. At one point, recalls Gagne, 40, "my mother and I had a big blowup, right there in front of the doctor." The granddaughters prevailed, and a tube was inserted, but Svanberg's condition worsened. She died on Feb. 19, leaving a family that was mournful, says Gagne, but knit tighter and united in the belief that it was right to have given Svanberg a chance to recover. "Even the aunt who was hardest on me has become a friend," Gagne says.

Then there are cases like that of an Iowa social worker who had guardianship over her mother, who was in a persistent vegetative state following a reaction to iodine. After three years, the woman and her sister agreed to remove their mother's feeding tube, but they did not inform their aunts for fear the women would try to stop them. "To this day, they don't really talk to us," says the social worker.

The burdens on a family are significantly reduced when the patient has made decisions in advance--for instance, choosing a surrogate to act on his or her behalf by filling out a durable power of attorney for health care. A living will, also known as an advance directive, helps a proxy understand the patient's wishes--and "avoids the suspicion that a family is doing something for ulterior motives," notes Prager.

A living will is not a panacea. "It's a piece of paper," says Brandt. "It can't get at all those gray areas that happen every day." It may specify that no "extraordinary measures" to prolong life be taken. But are those measures defined? Is CPR extraordinary? A feeding tube? A respirator? What's more, in an emergency, doctors are consumed with saving lives. In practice, written directives often don't come up.

Nor can a living will always trump a family's convictions. A study published last July in the Archives of Internal Medicine found that 65% of doctors surveyed said they would not necessarily follow a living will under special circumstances, such as intrafamily conflict. Prager recently consulted with the relatives of an elderly woman who had suffered a cerebral hemorrhage and was clearly going to die. Her advance directive specified that no extraordinary measures be taken to save her. But her devoutly Jewish son believed that taking his mother off a ventilator would be murder. Prager's committee, the family members, their rabbi and their doctors decided that the ventilator would extend the woman's life by a few weeks, at most. "We did not feel that her will would be significantly violated," he says. She remained on the ventilator and died soon after.

The intense coverage of Terri Schiavo's experience seems to have made many Americans think, That could be me. Jay Sekulow, chief counsel of the American Center for Law and Justice, which has worked on behalf of Schiavo's parents, doubts that their efforts will motivate more families to take conflicts to court. Instead, he says, "I think people will be much more specific in what they want their medical treatment to be." Indeed, Johanson says that at his hospice, the case is "creating fear in patients that their wishes will not be met"; many are responding by "getting things down on paper." Keith Tighe says he and his brothers have reacted to the news by getting advance directives. A TIME poll last week found that 69% of those surveyed who do not have a living will said the Schiavo case had made them think about getting one, or at least talking with their family about how they would like to be treated in their final days. --By Jeff Chu. Reported by Amanda Bower/ New York, Laura A. Locke/ San Francisco and Maggie Sieger/Chicago

If you're thinking about composing a living will, visit time.com/ schiavo for a listing of online resources to help get you started

With reporting by Reported by Amanda Bower/ New York, Laura A. Locke/ San Francisco, Maggie Sieger/Chicago