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Interest in living wills falls after Schiavo saga

Despite the court battle over Terri Schiavo's feeding tube, only 1 in 5 Floridians has a living will.

By MARCUS FRANKLIN
Published June 18, 2005

ST. PETERSBURG - For years now, people have pointed to the Terri Schiavo case as an example of the need to prepare instructions for end of life care.

Put in writing what medical treatment you'd want - or wouldn't want - lest you, too, become the center of a long, public and emotional legal battle involving your relatives.

As the 15-year Schiavo saga climaxed in March, tens of thousands of people scrambled to write living wills. But just how lasting a legacy has the Schiavo case left?

Two and a half months after Schiavo's death, interest in living wills has fallen significantly. During that spring, as news of the bitter legal wrangling between Schiavo's parents and her husband blared, people rushed to attorneys, hospitals and the Internet to complete living wills, those who work with such documents say.

But while that level of interest has waned, it hasn't plunged to depths seen before March, they say.

"I don't think it will return to previous levels," said Paul Malley, president of Aging with Dignity, a national advocacy group based in Tallahassee. "We have a very real example of why advance care planning is so important. Before it was so abstract. I think for years to come people will remember this case, and it will stand out as a motivator to fill out a living will."

This year, Malley said, he finally persuaded his mother in St. Petersburg to complete the forms she had put off for years. "I think it was this case," he said.

Before the Schiavo case returned to headlines in March, Aging with Dignity received about 50 to 100 requests a day for its Five Wishes living will booklet. At the height of the Schiavo spectacle that month and into April, requests skyrocketed to 6,000 a day, he said. Since March, the group has received 800,000 requests for the booklet, in which a proxy - a friend or relative - is named to make medical decisions in an emergency, he said.

Today, the group receives a few hundred requests daily.

"It's calmed down a little bit," Malley said.

Schiavo, 41, died March 31, 13 days after her feeding tube was removed after a protracted, bitter legal struggle. She had spent 15 years in what most doctors considered a persistent vegetative state.

Schiavo's husband, Michael, said she told him she would not want to be kept alive in such a state. Her parents disagreed. She left nothing in writing.

This week a Pinellas County medical examiner released autopsy results that said Schiavo suffered from profound and irreversible brain damage and could not have been helped by therapy.

Dr. Joseph Barmakian, an orthopedic surgeon who founded the U.S. Living Will Registry in Westfield, N.J., said the group's Web site got 500 visits a day before March and 30,000 to 50,000 a day in March and April. Today it gets about 2,000 a day, he said.

He said he doubts that hits will fall much lower. "There's always ethical issues about the end of life coming up," he said, referring to the current case of a brain-dead Virginia woman being kept on life support in hopes of saving her 21-week-old fetus.

The registry is a private organization that electronically stores organ donor information, emergency contact information and advance directives, which include living wills, health care surrogates and do not resuscitate orders. The registry makes the information available to health care providers nationwide 24 hours a day through an automated system.

Barmakian's own living will, for example, asks that no machines such as ventilators be used to prolong his life if he had no chance of recovery, but it also states that doctors could continue to administer antibiotics, food and water.

Five years ago, Bayfront Medical Center rabbinic chaplain Kate Fagan encouraged the hospital to start offering the Five Wishes forms to employees. It was already offering a similar service to patients, she said.

"In the months when Terri was in the news, the interest level skyrocketed," Fagan said. "There's still a higher interest than there was before, but it's certainly leveled off.

Fagan, who continues to get at least one inquiry each day about Five Wishes, estimated that a third to half of Bayfront's 2,000 employees have completed the booklet.

"Some are actually taking them home to their families," she said.

James R. Kennedy Jr., a St. Petersburg family law attorney, said interest among his clients peaked in 2000 when the initial battles over Schiavo's fate began between her husband and parents in a Pinellas courtroom. Before then, he often initiated conversations about living wills. Afterward, clients started bringing up the subject.

"After the Schiavo case, people would come in saying, "I want one of those living wills,' " Kennedy said. " "What happened to that poor lady I don't want to happen to me.'

"It's steady," he said of requests for living wills.

Karen Keaton, a St. Petersburg attorney who speaks to groups about living wills and health care surrogates, said she remains in high demand.

"I have not noticed much of a falloff," she said. "The interest has continued to increase even since her death."

But even with all that newfound interest in living wills, only about 1 in 5 Americans and 1 in 5 Floridians have written instructions for end of life care, said Malley, the Aging with Dignity president.

"Even though there was an incredible increase in interest in the last three months, there's still a long way to go," he said. "Most people still have not put their wishes in writing."

Marcus Franklin can be reached at mfranklin@sptimes.com or 727 893-8488.

www.agingwithdignity.org or call 888 594-7437

www.uslivingwillregistry.com or call 800 548-9455

[Last modified June 18, 2005, 00:45:19]