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Five years after Schiavo, few make end-of-life plans

MIAMI – Five years after the court battle over allowing Terri Schiavo to die, most Americans still don’t draft the legal documents that spell out how far caregivers should go to keep them alive artificially.

Schiavo’s life and death captivated the country and fueled conversations about the necessity of the documents, known as advance directives or living wills. Even though millions witnessed a worst-case scenario, there’s no indication it had a lasting impact on getting more people to make their wishes known.

“The gap is so big,” said Paul Malley, president of Aging With Dignity, which advocates advance directives and which saw an increase in interest during the Schiavo case. “Even a significant impact from the Schiavo case doesn’t put a dent in the need that’s out there.”

The protracted family fight over keeping Schiavo alive, and her ultimate death March 31, 2005, plastered her story in headlines and prompted an immediate spike in Americans filling out advance directives. But while Schiavo’s struggle remains in the minds of many, the momentum it created for writing the instructions appears to have ebbed.

End-of-life experts estimate 20 percent to 30 percent of U.S. adults have advance directives, the same as before the Schiavo case. Even in polls of older Americans, who fill out such forms at higher rates, there is little, if any, change from 2005.

“Awareness is up,” said Kathy Brandt, a vice president of the National Hospice and Palliative Care Organization. “But I don’t know that people understand any better, and I don’t know that we’re ever going to get better than a third of Americans.”

Much of the problem with advance directives is people aren’t entirely sure what they do, or fear they’d be forced to forgo lifesaving treatment. In fact, they can be changed by the patient and would only be used in limited grave circumstances, typically in which they can no longer communicate their wishes.

Living wills spell out desires regarding the use of respirators, feeding tubes and other life-support efforts, and to what lengths a person wants to be kept alive in the face of brain damage, comas and other conditions.

Schiavo, who collapsed at her St. Petersburg home in 1990, had no such instructions in writing. Her heart stopped and she suffered what doctors said was irreversible brain damage that left her in a permanent vegetative state.

Her husband said his wife would not have wanted to live in a vegetative state; her parents wanted her kept alive. In the end, her feeding tube was ordered removed two weeks before she finally succumbed.