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Experts say living will ineffective; more important to choose healthcare surrogate

April 3, 2006

by Diane C. Lade
South Florida Sun-Sentinel

Reprinted from South Florida Sun-Sentinel

Those on both sides of the contentious right-to-die debate agree there was one bright spot in the tragic events surrounding Terri Schiavo's death one year ago last Friday: It prompted thousands to draft living wills detailing the care they would want if they could not speak for themselves.

But some experts now say living wills, for years touted as the way for patients to retain control and avoid painful end-of-life family feuds, on their own offer little protection.

Far more important, they say, is to also draft documents naming a spouse, trusted friend or -relative as a health-care surrogate -- the person who can make medical decisions on your behalf if you're incapacitated. And ongoing dialogue between patients, their families and doctors about their final wishes will do far more to ensure those desires are followed, they say, than a living will drafted years ago and stuck into a safety deposit box.

University of Miami bioethics professor Ken Goodman increasingly hears about hospitals erring on the side of over-treatment and life support when family squabbles about end-of-life care or vague living wills arise. "They are afraid if the conflict gets too hot, they'll be 'Schiavoed,'" said Goodman, president of the Florida bioethics network.

Still, Goodman thinks people are better off with living wills than without them as long as they recognize the limitations, especially if writing them encourages old-fashioned conversation about a tough topic --death. The Evans family discovered the discussions they had as their mother, Grace Evans of Pittsburgh, prepared her living will turned out to be more helpful than the will itself.

Evan Evans of Fort Lauderdale had taken several Five Wishes living will forms from the Florida-based Aging with Dignity organization to his mother's birthday celebration last April, a month after Schiavo's death. The 12-page document covers spiritual and personal end-of-life choices, as well as medical ones, "and we ended up feeling very clear about what she wanted," Evans said.

That clarity was invaluable when Grace Evans, 80, had a massive heart attack while undergoing surgery several months later. When the family showed her doctor the will, "he said it didn't mean anything to him and it wasn't a legal document," Evans said.

But what did matter was that the doctor could confer with Evans and his two siblings, and they all told the doctor that being disconnected from life support was what their mother wanted. Numerous studies over the past several years have shown that living wills alone don't help close family members, yet alone doctors, predict and understand a relative's end-of-life wishes. "The living will has failed, and it's time to say so," wrote University of Michigan researchers in an article published in The Hastings Center Report bioethics journal.

A recent report issued by the prestigious President's Council on Bioethics called living wills a "limited and flawed instrument," and it warned that patients and their families "should not be mislead or encouraged to think otherwise." Dr. Paul McHugh, a council member and psychiatry professor at Johns Hopkins University in Baltimore, is even more blunt.

"I think living wills are ridiculous and I don't encourage them," he said. "Doctors don't follow them because they don't speak to the situation patients often are in."

Yet appointing a health-care surrogate is "almost always sensible," the bioethics report said -- and far more important than making a living will. Many elder-law attorneys agree.

"Doctors want to talk to a human being and get some guidance, no matter what is written in a document," said Scott Solkoff, a Boynton Beach board-certified elder-law attorney on statewide legal public policy committee.

Oregon physicians were so frustrated by living wills not being honored during the 1990s that they created a new instrument that put the patient's desires expressed in the will into a medical document. It's called a Physicians Order for Life-Sustaining Treatment, or POLST. It's now being used in six states and considered by several others, including Florida.

POLSTs usually are used when a patient has a year or less to live. The doctor goes over the form with the patient, or with the surrogate if the patient can't communicate, and asks about specific treatments. Does the patient want a feeding tube or to be resuscitated? Pain medication to remain comfortable?

The doctor then completes and signs the document, making it a physician's order that is easily recognized by health-care officials "Think of the POLST as the action form for your end-of-life wish list," said state Rep. Ed Homan, R-Tampa, an orthopedic surgeon. He is sponsoring a bill (HB 1017) creating a voluntary POLST procedure and form.

The living will and the lesser-known health-care surrogate designation are known as advance medical directives, or documents designed to let people retain control over their health-care decisions. Schiavo was 26 when her heart stopped, cutting off oxygen to her brain. Like most people her age, she had no advanced directives. She remained in a persistent vegetative state for 15 years while her husband and her parents battled bitterly through the courts about disconnecting her from her feeding tube.

Aging with Dignity credits Schiavo for the fact that the organization distributed 2 million forms nationwide in 2005 -- more than double the previous year. Interest remains high, said president Paul Malley, with 500,000 forms given in the first three months of this year.

Still, it is estimated only 16 to 20 percent of the American population has living wills, most of them senior citizens. "We still have a lot of work to do," Malley said.

Reprinted from South Florida Sun-Sentinel

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