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The Terri Schiavo Case

Documents alone might not ensure final wishes

By LISA GREENE, Times Staff Writer
Published October 22, 2003

[Times photo: Bill Serne]
Pat Anderson, attorney for the parents of Terri Schiavo, talks to Schiavo supporters on Tuesday. Experts say the Schiavo case is an example of what can happen when people don't clearly communicate their end-of-life wishes.

Medical ethics expert Ray Moseley always has a question for his audience when he speaks about making the decisions on how your life will end.

How many of you, he asks, know someone who had a living will that wasn't honored?

"Invariably, 25, 35, even 50 percent of the hands will shoot up," he said. "It's not an uncommon situation."

His survey is far from scientific. But Moseley, associate professor of bioethics at the University of Florida College of Medicine, said it shows another point.

"There is a growing public perception that advance directives are often not honored," he said.

That perception is often true, say Moseley and other experts. Too often, people leave vague wishes. They don't talk to family members. They fill out a form, lock it in a safe deposit box, and forget about it.

But Moseley and others also said there are steps to ensure your final wishes are carried out.

"We make every effort possible to honor the person's directive if the language is clear and the person's intent is clear," said Tim McMahon, director of cancer services and a member of the ethics committee at Morton Plant Hospital.

Most of the problems stem from a simple source: failure to communicate.

"Our main message is, it's not enough to just fill out a document," said Paul Malley, president of Aging with Dignity, a Tallahassee advocacy group.

It was a message officials - including Gov. Jeb Bush and Senate President Jim King - were spreading Tuesday. Both men urged Floridians to write living wills. King, a Jacksonville Republican, even distributed forms on the Senate floor, asking his colleagues to pass them on to constituents.

Malley said that in the past five days, his group has received more than 2,000 requests for copies of Five Wishes, its living will form, used by 500 hospitals. Project GRACE, co-founded by a Tampa Bay cardiologist, also has a living will form. Experts said both forms ask specific questions that make it easier for doctors to follow.

Largo resident Darryl Kohn is among those worrying about their final days. Kohn, 57, has had five strokes. He has end-stage liver disease, so severe he said a transplant likely won't help. He's on disability and in constant pain.

"I want to die when death comes, without intervention," he said. "I don't want to be brought back so I can suffer more."

Kohn has told his doctor, his pastor and his family members. He's filled out forms and had his doctor sign an order that he doesn't want to be resuscitated. But he's afraid that's not enough. He's frustrated from calling hospitals to ask about their policies and has considered consulting a lawyer.

But the steps Kohn has taken are exactly the advice given by Dr. Ronald Schonwetter, chief medical officer of Lifepath Hospice and professor and director of geriatric medicine at the University of South Florida.

"The critical things are communicating to two sets of people," Schonwetter said. "One is your health care profession. The second group is your loved ones or health care proxy."

A woman once called Malley from the emergency room. Her mother was there, critically ill, and the daughter had just learned that her mother had designated her as her health care surrogate. The problem: the women had never talked about it. The daughter didn't know what to do.

McMahon still remembers his own crisis from a Texas hospital where he also served on the ethics committee. A woman there became critically ill and went on a ventilator. Her two sons, thousands of miles away, hadn't spoken to each other in 10 years, and to their mother for longer. One wanted to do everything to save his mother's life. The other was convinced she would want the ventilator removed.

The hospital had to get both men to fly to Texas and meet with the 15-member committee before they could resolve the conflict. In the end, McMahon said, the brothers put aside their differences and sat beside their mother's bed as the ventilator was turned off.

"If people are able to complete an advance directive, and have these discussions while they're extremely healthy...it helps everybody to honor what that person would have wanted," McMahon said. "Unfortunately, we don't have those conversations enough."

- For more information: www.agingwithdignity.org or www.p-grace.org Staff Writer Steve Bousquet contributed to this report.


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