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A rush to write final wishes

Alan Meadoff knew two years ago when he was diagnosed with prostate cancer how he wanted to go in the end.

No feeding tube. No life support. No assisted-living facility or nursing home. The retired furniture designer in Jamestown, N.C., wrote it all down in a living will.

The document gave him peace of mind - until the legal battle over brain-damaged Terri Schiavo grew more heated and Meadoff began worrying that his instructions weren't specific enough. He designated two new proxies to represent him and spelled out that no one - not friends, not doctors, not the government - was to interfere with his wishes.

"I went back through my living will and revised it," says Meadoff, 61, who recently learned that his cancer has spread to his lungs. "God forbid I ever get to the point where Schiavo is, but I don't want to sit, drooling on my leg in a nursing home. God forbid the government intercede in something like that. ... They should make it mandatory around the country that people should have a living will."

Alarmed at the bitter Schiavo battle, which has pitted her husband against her parents, and legislators against judges, over whether the brain-damaged woman should continue to be fed through a tube and kept alive, many people are rushing to make sure that their end-of-life wishes are in writing and known to loved ones. They're contacting lawyers, discussing the matter with relatives and downloading forms from the Internet that can be used to detail what measures should - and should not - be taken in the event that they become incapacitated.

Meadoff, for example, requested 25 copies of a living will from the Tallahassee-based group Aging With Dignity - one for himself and the others to give to patients and friends at the cancer hospice where he volunteers.

Making abstract real

Only 1 in 5 Americans has created advance medical directives, documents that spell out a person's health care choices in a living will and appoint a decision-maker on his or her behalf.

But experts say the Schiavo case, in which the Florida woman has remained in a vegetative state for 15 years as her family fights over her life, could jolt more Americans into documenting their final wishes.

"Regardless of what people think is right or wrong in the Schiavo case, they all agree that this is not the way a decision should go," says Paul Malley, president of Aging With Dignity, a nonprofit that offers a living will to callers. "This case is taking an issue that's very abstract, death and dying, and making it more real. That's why people are responding to it."

Aging With Dignity has received thousands of calls and e-mails a day since the Schiavo case went back to court in recent weeks from people requesting copies of its living will, also known as an advance directive. Similarly, the U.S. Living Will Directory in Westfield, N.J., has seen the number of visitors to its Web site rocket from 500 to 600 daily to more than 5,000 per day over the past two weeks.

The Maryland attorney general's office has seen a jump in the number of callers and e-mailers who are requesting copies of living wills, and more people are downloading the document from the state's Web site.

"Anybody, any reasonable person, who looks at what happened to Terri Schiavo's husband, parents and siblings, would want to do everything to prevent that from happening to their own family," says Jack Schwartz, a Maryland assistant attorney general.

Some hospitals and health care providers in Maryland say they, too, have seen an increase in interest: On Monday, six families picked up paperwork to create advance directives at the spiritual care division at St. Joseph Medical Center in Towson, for example, about the same number that typically show up in one week.

"There's a lot of old people here that need it," said Wallace Childs, a 69-year-old former trial lawyer from Towson, who picked up forms at St. Joseph's during a heart checkup yesterday. "A lot of times, if you fill the thing out and you get it all signed, sealed and delivered, that helps them 100 percent."

Childs, who never bothered to create advance directives in 1999 when he underwent multiple coronary bypass surgery, was spurred into action this week after watching the TV coverage of the Schiavo case. He picked up advance directive forms for himself and his 82-year-old wife, who has multiple sclerosis, and planned to photocopy the document to take door-to-door in his apartment building.

Experts say that while a majority of Americans know how they want to be treated in an end-of-life situation, few take the necessary step of putting it into writing. Few want to consider their death or the chance of an unexpected accident taking away their ability to make decisions for themselves. Or they avoid creating a living will because of the mistaken belief that they have to consult with and pay an attorney to draw one up. In reality, it can be as simple as filling out a form and having two witnesses sign off on it.

"There's no doubt that if there were an advance directive in Terri Schiavo's case, none of this would be on television right now. We wouldn't be talking about it," said Joseph Barmakian, president and founder of the U.S. Living Will Registry.

But, for many, it takes a deeply personal experience to spur them into action.

Michael H. Davis, a Baltimore attorney, said he has prepared several living wills over the years for his clients. But it took losing his older brother to congestive heart failure in January to make him prepare one for himself.

"My brother became very sick and was unconscious for six months," Davis said. "My brother and I had discussed how he wanted to deal with that situation, but I never told anyone what he wanted. We were very close, but the fact was, I didn't have a document signed by him. We were fortunate that his death came as a result of the progression of the disease and there was never a time when we had to make a decision.

"That situation, and that situation alone, made me make a decision to get it done and get it done now," Davis said. "I don't consider myself high-risk. I'm not dying. I'm capable of speaking for myself. That's why I always put it off."

New proxies

For Thomas Scilipoti, the deaths of his wife last April and of several friends in recent years - and now the Schiavo case - have weighed heavily on his mind. Just recently, his attorney, Alan F. Deanehan, called him to update his living will, which had named his wife, Concetta, as his No. 1 proxy.

In revising his directive, Scilipoti named his three children as his new proxies. "I told them I'm 74, and I've got a front-row seat now," said Scilipoti, a Fells Point photographer. "I've told them I do not want to be on life support. No feeding tubes. I have specified to be cremated, and I want my ashes to be placed in my wife's crypt. You never know when a car accident, a robbery or anything might happen to get you into that position. That's not for me."

As Terri Schiavo's husband learned, and as experts warn, just talking about it is not enough. Without legal documentation, life-and-death issues can end up in court if there is disagreement on treatment.

In some cases, even having a living will is not enough.

That is why many experts recommend taking these three steps to avoid future problems:

  • Discuss with family members your philosophy on end-of-life treatment.
  • Designate two or three proxies who agree on how to uphold your last wishes and will make medical decisions on your behalf.
  • Spell out exactly what kind of treatment or aid you want to receive in case of terminal illness or brain damage. For example, with medical advances today, some people might want to clarify how long they would like to remain on a respirator while doctors try different treatments. Copies of the directive should be kept in the home and distributed to all the proxies, the family doctor and nearby hospitals. Organizations like the Living Will Registry will also keep directives on file to share with health care professionals nationwide 24 hours a day. Michael Gordon, a Baltimore attorney, said he recently sent out 300-plus letters urging his clients to draw up advance directives. Ruth Sullivan, a director of patient advocacy at Shore Health System, said she distributes about 30,000 advance directive forms a year to people who visit her two hospitals in Easton and Cambridge. "The last thing you want to be faced with is the fact that you might not survive," Sullivan said. "That's why most people shrug it off. It's a lot to think about. ... But when people call me and say, 'My parents are getting older, they'd like to make a living will,' I always tell them, 'Well, here's five copies. Don't just do it for them. Do one for yourself, too.' "'You could go at any moment.'" Sun staff writer Erika Niedowski and researcher Shelia Jackson contributed to this article.
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