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Your Choice, Your Peace of Mind


Schiavo case increases interest in living wills

Living wills, which lay out people's end-of-life decisions, could help families avoid what has happened to Terri Schiavo, experts say.

By: Connie Prater
Oct. 27, 2003


The dispute over Terri Schiavo's feeding tube has divided a Florida family, but the saga has had a beneficial side effect: People across the state and nation are talking about and, more important, writing in living wills instructions for their own final days.

'We're hearing from so many people who . . . see how heartbreaking it could be for a family and ask, `How can I prevent something like this from ever happening to me?' '' said Paul Malley, president of Aging With Dignity, a private, nonprofit group that offers $5 copies of a kind of living will called Five Wishes

As of Friday, the Tallahassee-based group had handled requests for 20,000 copies of the 12-page will since Oct. 16 -- a huge increase from the 200 copies requested during an average week. Some people are ordering the wills to give as Christmas presents. Companies are requesting them for their employees.

"If there's anything good that can come of this tragedy, it is this," Malley said of Schiavo's case. "She is teaching us a lot."

A living will tells doctors and family members whether patients want to be kept alive on respirators or feeding tubes. Chapter 765 of the Florida Statutes spells out the powers and provisions of the document. You do not need a lawyer to draft one, and it does not have to be notarized, although it must be signed by two witnesses who are not relatives. When patients check into hospitals for surgery or other procedures, they get a form free.

Since its introduction in 1996, more than three million copies of the Five Wishes form have been shipped nationwide. Malley said the form spells out in simple terms patients' wishes in five key areas: who will speak for them if they can't, whether they want life-prolonging measures taken, their physical and emotional needs during the final days, and any final messages to loved ones.

Estimates are that only about 30 percent of Floridians have either written instructions on what they want if they are incapacitated or have designated surrogates to make medical decisions for them, said William Allen of the University of Florida's Program on Medical Ethics, Law and Humanity.

"The problem is everybody thinks, `It's a good idea and I need to get around to that,' but they don't -- especially younger people," Allen said.

SCHIAVO DISPUTE

Had Schiavo created a living will, the 13-year court battle over her fate could have been avoided, experts say. Her husband, Michael, has testified that Schiavo told him years ago that she didn't want to be kept alive artificially. Her parents dispute this, but there is nothing in writing.

Doctors and legal experts are emphatic about such a document's importance.

"If you don't want your loved ones fighting at your deathbed, make sure they all know what you want and what you don't want," said Ken Goodman, director of the University of Miami ethics program and co-director of the Florida Bioethics Network, the group that helped draft the state law governing living wills.

A heart attack in 1990 left Schiavo with brain damage at 26. She has been fed water and nutrients through a tube in her stomach. Although her parents and the doctors they hired say Schiavo responds to them with facial gestures, most doctors have said she is in a persistent vegetative state and will never recover.

The case "is showing everybody else what we need to do," said Miami attorney Paul Stokes, who specializes in wills, trusts and estates. He said the Schiavo case has made him pay more attention to living wills for his clients.

His advice: Put your wishes in writing. "Then send a copy to your doctor, to the hospital -- it's no good in your top drawer -- make photocopies and give them to your friends and relatives."

Schiavo's case prompted 85-year-old Evelyn Lyons of Deerfield Beach to dig into a drawer -- where she had kept a blank copy of Five Wishes for nearly a year.

"I suppose I was just postponing something that I didn't want to be confronted with," said Lyons, a widow with daughters in Coral Springs and Pennsylvania. She told them that "under no circumstances do I want them to keep me on, no heroic measures. If they're told that there's no chance that I'll recover, they're to let me go."

Because of Schiavo, some doctors, too, are rethinking how they talk to patients about planning ahead. Traditionally, only those close to death from cancer or other terminal illnesses are counseled about living wills.

MORE DISCUSSION

But a debilitating heart attack or crippling car accident can happen at any time, and some doctors say they will now discuss the wills with all patients. ''We don't talk about it, and we should,'' said Dr. Ben Reiter, a family physician in Plantation, who said brochures on living wills are available for his patients.

Doctors also urge families to talk about how to prepare so a crisis doesn't create a family feud.

"Have a conversation about who you want to speak for you when you cannot speak," said UM's Goodman. "Have conversations with that person about what you want and don't want. Make sure everybody in the family knows who that is. Don't tell one son and not the other."

Shirley and Anthony Garofalo of Zephyrhills ordered copies of Five Wishes last week -- prompted by reports about Schiavo.

"That's a terrible, terrible situation for poor Terri," said Shirley Garofalo, 67, a retired minister. "If only she could open up her eyes and mouth long enough to tell people what she wanted."

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