Florida Case Spotlights the Need for Advance Directives

Living Wills

April 24, 2001 (Washington) -- The intense legal battle over the care of a 37-year-old Florida woman in a coma for 11 years may have ended on Monday when the U.S. Supreme Court refused to intervene in the case.

Michael Schiavo has been arguing that the feeding tube sustaining his wife, Terri, should be removed and that she should be allowed to die. However, her parents, Bob and Mary Schindler, say that Terri does respond to them and that she might recover.

Her recovery could be decades off -- if it comes at all. But the Schindlers say that's preferable to removing her life support system and allowing Terri to starve to death. She's been in a coma ever since she had a heart attack in 1990.

The quandary is that Michael claims Terri didn't want to be kept alive by heroic means, but she didn't prepare a document known as a living will or an advance directive that would have advised medical and legal officials how to proceed in a situation like this one. Complicating the case is Terri's medical trust fund of $700,000, which Michael stands to inherit.

Michael Williams, MD, a neurologist and co-chairman of the ethics committee at Johns Hopkins Hospital, works hard to avoid this kind of tragic conflict.

"I always expect that it's going to take more than one conversation, and the main reason for that is, because when I go in, and I have to break bad news to the family, there's naturally going to be an emotional response to that. ... I don't consider that an impediment to my job. I actually see that as a necessary part," says Williams. So far, he's never had a case get to court, although some have been brought to the hospital's ethics committee.

Actually, a federal statute enacted in 1990 requires hospitals to provide patients with general information about how they want to handle end-of-life care issues. In addition, every state has set standards for how these documents should be prepared.

"I view the advance directive not as a document written in stone. I view it as an invitation to a conversation. It's a place to start. ... I think talking about [a patient's wishes] is probably the most important thing. In particular, talking about it with physicians," says Williams, who works in the neurological intensive care unit. He says these life and death discussions come up virtually everyday.

However, Bob Arnold, MD, an internist who specializes in the ethics of doctor-patient relations at the University of Pittsburgh, says sometimes doctors themselves are reluctant to bring up these issues. "I think that the reason they're uncomfortable is that they're concerned that if they raise it, patients will give up hope, or that they won't think that the doctor's doing all they can to make them better," he says.

Not surprisingly, only an estimated 10% to 20% of patients actually enter the hospital with specific instructions drawn up for a worst-case scenario.

"I've found that people, once they talked about it, found it quite liberating, because ... it worked through some important stuff, and they were able to put it behind them as having been decided," Garey Eakes, JD, chief operating officer and director of public affairs for Partnership for Caring, tells WebMD.

His group offers guidance to people who want to plan for the day when they might not be able to make a crucial medical decision for themselves.

While it seems intimidating, preparing a living will can be something as simple as setting out your thoughts on paper, or discussing your feelings with someone close to you. More sophisticated documents include a delegation to someone who can exercise some authority on your behalf. A healthcare declaration names an individual who has legal rights to be your agent in medical decisions.

Eakes has seen firsthand what can happen when a dispute over care erupts in a family. He was co-counsel for Michelle Finn, who fought for three years to end her husband Hugh's treatment. The one-time television anchor wound up in what was an apparently irreversible coma after being involved in a car accident in 1995. Ironically, Eakes says, just before the crash, Finn had asked a lawyer to prepare an advanced directive so he wouldn't wind up in what doctors call a permanent vegetative state.

However, Finn's family insisted that their son be kept alive, and, literally at the last minute before a Virginia court allowed the removal of Hugh Finn's feeding tube, the state's governor intervened on the family's side. Ultimately, Michelle Finn prevailed and ended the treatment in 1998, which lead to Hugh's death. A bill was then passed in the Virginia legislature giving Michelle some $73,000 in compensation.

The experience, among others, caused Eakes to devote his efforts to helping others plan for end-of-life care.

"Doctors need to be sensitive for families, but also to be very conscious of learning the wishes of the patient," says Eakes.

Williams agrees. "I will tell families if I think that we're in a situation where we ought to keep going, but I try always to do that in the context of knowing as best as I can what the patient's wishes are."