End-of-Life Decisions: What If It Happens In Your Family?

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.