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Many more making last wishes knownARIZONA DAILY STAR
Tucson, Arizona | Published: 02.28.2006
Nearly a year has passed since the gut-wrenching saga of Terry Schiavo seized the nation's attention, but her embattled death still inspires Americans to make known their wishes about end-of-life care.
Schiavo's story inspired a national conversation about living wills and other "advance directives" that ensure individuals' last wishes will be followed by doctors, hospitals and even feuding family members.
And the conversation continues, according to local and national experts who say the number of Americans filing living wills remains much higher than before the Schiavo case began to dominate the news last year.
Tucson elder-law attorney Victoria Blair said she sees "a lot more people opting to do living wills, and Terry Schiavo comes up almost every time."
Blair has an appointment Thursday with Eva C. Otero, 54, who is disabled with severe epilepsy. Her neighbors have called 911 after finding her unconscious on the sidewalk outside her home. Co-workers have driven her home after she has suffered seizures at work.
"When I saw the story about Terry Schiavo, I thought, 'How can this be avoided?' " Otero explained. She has since talked with her grown children and her former husband, telling them she wants to die naturally, without tubes and machines keeping her alive.
Otero kept putting off the living will, she said, because it made her sad to talk about her own death. But now her attitude is: "Get it done. You don't know what's going to happen. You can't predict the future."
Connie Noirot, 52, of Tucson, chose to fill out the advance directive forms she was offered at the hospital before hip-replacement surgery in December. Noirot thinks her mother's death five years ago was easier for her family because her mother made a living will and talked freely about her wishes.
"When I filled out the hospital form, I thought if something does happen, I want it to be easy on everyone," Noirot said. "I think a legal piece of paper helps."
But Noirot's sister Cindy, a bone-marrow-transplant coordinator at University Medical Center, holds the opposite view. She underwent surgery last month after opting not to complete the advance-directive forms offered by the hospital.
"I'm not sure that piece of paper carries much weight in the end," said Cindy Noirot, 55. "I've always made sure that I've made my wishes known to my siblings and my daughter, and I think that's the most important thing.
"I still believe that if I am unable to make a choice on my own, they will come to a decision based on what they know of me and what information they have at the time."
William Colby, a Kansas attorney and the author of an upcoming book on Schiavo, "Unplugged: Reclaiming the Right to Die in America," has chosen not to make a living will.
But he gave his wife his "medical power of attorney" to make decisions on his behalf if he cannot make those decisions himself. He also has named several alternates, in case something happens to his wife.
Living wills "shore up" those who must decide when to let someone die, Colby said.
"But I want a living, breathing advocate — somebody to whom I've talked about my views and values," he added.
Schiavo died in Pinellas Park, Fla., on March 31, nearly two weeks after a state Circuit Court judge ordered the removal of the feeding tube that was keeping her alive. She was 41 when she died, nearly 15 years after a heart attack left her irreversibly brain-damaged.
Her death followed a bitter, seven-year battle between her husband, who said she would not want to be kept alive, and her parents, who wanted to keep her on life support. The fight raised ethical and legal questions that ultimately drew the attention of Congress, the White House and even the Vatican.
"There is nothing we could have done to raise awareness the way this whole unfortunate situation in Florida did," said Kathy Brandt of the National Hospice and Palliative Care Organization, a leading source of information on end-of-life care.
The organization continues to receive 10 times as many calls to its consumer help line than it received before Schiavo's story became national news, Brandt said, and more than 1 million advance-directive forms have been downloaded from its Web site over the past year.
The president of Aging With Dignity, a Florida organization that distributes the widely used Five Wishes advance-directive form, has found even college students are thinking about living wills.
"They make the connection that Terry Schiavo was 26 years old" when she suffered brain damage, Paul Malley said. "I think the Schiavo case showed in a very real way what can happen if you haven't given any instructions to your family."
The U.S. Living Will Registry has recorded more than two times the number of living wills since Schiavo died, compared with the nine years before, said Dr. Joseph Barmakian, a New Jersey orthopedic surgeon who founded the registry in 1996.
Living wills and powers of attorney are important not just for people who want no life-support measures, but also for those who want doctors to do everything possible to keep them alive, said the hospice organization's Brandt.
Despite increased awareness of the importance of advance directives — whether they are living wills, designated powers of attorney or both — a major problem still keeps people from having their wishes followed, attorney Blair said.
"People think all they have to do is fill out a living will and put it away in their safe-deposit box," she said. "But the next important step is to distribute copies of your living will to all your family members, your doctors, any hospitals you are likely to use, your place of employment, your place of worship — and, of course, anyone who may be called on to make decisions on your behalf."
People can go a step further by recording their living wills with the Living Will Registry and the Arizona Secretary of State's Advance Directive Registry. The Arizona service, started last March, has recorded nearly 4,900 living wills.
Both registries charge nothing to record the will, and they supply wallet cards that tell doctors and others how to access your advance directives.
Said Malley, of the Aging With Dignity group, "That's as close as you can get to a guarantee that your wishes will be available to anyone who might need to know them."
The number of Five Wishes advance-directive forms distributed last year by Aging With Dignity. That's up from 1 million requests for the form in 2004.
25,000
The U.S. Living Will Registry recorded 10,000 living wills in the nine years before Schiavo's death. Since then, the registry has recorded almost 25,000 additional living wills.
● Contact reporter Jane Erikson at 573-4118 or jerikson@azstarnet.com.
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