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NEW END-OF-LIFE LAWS ADVOCATED

Conservatives and disability advocates want to make sure rules are in place to guarantee that a battle such as the one over Terri Schiavo won't happen again

The rule of law left Terri Schiavo dead.

And that's why social conservatives and advocates for the disabled want to change the law.

In the wake of Schiavo's death and in the shadow of Pope John Paul II's struggle for life, moves are afoot in Washington and in some states to revisit the law as it regards end-of-life decisions -- even though many doctors and lawyers say changes are not needed.

"Obviously there's some reaction against it, but I think that as time goes on Congress will carefully consider appropriate action," said Burke Balch, director of the Robert Powell Center for Medical Ethics at the National Right to Life Committee.

Even liberals concede that Congress may get involved.

"I think we should look into this and very possibly legislate," said Rep. Barney Frank, D-Mass., on ABC's "This Week with George Stephanopoulos."

Bills proposed by Rep. Dave Weldon, R-Fla., and Sen. Tom Harkin, D-Iowa, would be the likely starting points. Those bills would give the family of any incapacitated person the right that Congress gave Schiavo's two weeks ago: the right to appeal to the federal courts for relief.

Balch acknowledged, though, that Weldon's bill might have to be revised, given that the federal courts refused to intervene in the Schiavo case.

Others have suggested federal legislation that would bar the removal of feeding tubes or other life support when families are in conflict over the future of an incapacitated person. Disability-rights activists argue that Congress should review that possibility and others to make sure that cases like Schiavo's never happen again.

"What we're hoping for is an open discussion about what, if any, safeguards will there be on the behavior of guardians who may feel that the person they are guarding would be better off dead," said Diane Coleman, president of Not Dead Yet, one of 26 disability-rights groups nationwide that opposed the court-ordered removal of Schiavo's feeding tube.

That review needs to take place at the state level, too, Coleman said. She said New York is one of only two states requiring "clear and convincing evidence" that a person in a persistent vegetative state would want to be denied food and water.

Despite Coleman's call for such a review, several medical professionals and lawyers said they were generally happy with New York and federal -- law as it regards end-of-life decisions.

"My sense is that the law is working quite well for those who understand it and take advantage of it," said David W. Wilson, a Buffalo attorney who has worked on such issues for two decades. "The problem is, many people don't have the documents they need (regarding end-of-life decisions), and don't even know they should have them."

Many experts say everyone over the age of 18 should have a health care proxy -- someone legally appointed to make end-of-life decisions and a "living will" that spells out one's intentions in case he or she becomes terminally incapacitated.

They said individual initiative getting those documents drawn up should be enough to prevent anyone from ending up like Schiavo: helplessly caught between family members who disagreed about her wishes.

"I think the health care proxy law is a good law," said Mary Ann Jezewski, associate dean of research at the University at Buffalo School of Nursing. "It gives a lot of power to the proxy, and the health care provider must follow the proxy."

The trouble is, studies show that fewer than 20 percent of people have appointed a health care proxy, said Dr. Patricia Bomba, vice president and medical director/geriatrics at Univera Health Care.

It costs less that $250 to draw up the legal documents to appoint a proxy and draw up a living will, Wilson said. Yet if someone becomes incapacitated without those documents, State Supreme Court must appoint a guardian which can cost up to $6,000 in legal expenses while risking family conflicts like the one surrounding Schiavo.

That being the case, several doctors and lawyers said people should get those documents drawn up and that Congress should steer clear of the issue.

"I don't think it's really the place of the federal government to get involved in these situations," Bomba said. "I think the American people have spoken to the fact that these are family matters."

Indeed, a CBS News-New York Times poll found that 82 percent of those surveyed thought Congress should have stayed out of the Schiavo matter.

Of the Buffalo area's three House members and two senators, only one -- Rep. Brian M. Higgins, D-Buffalo -- responded to requests for comment on the politics of the issue.

Higgins voted for giving Schiavo's parents the right to appeal to the federal courts to try to save her life. He said he couldn't, in good conscience, vote otherwise in a life-or-death matter.

"At the time, with that human tragedy being played out, I thought the federal legislation at least provided an additional review," he said.

At the same time, Higgins said the congressional action was a Republican attempt to force Democrats into a tough vote.

"I think it was a cynical ploy to entrap some Democratic members like me who have competitive districts," Higgins said. "It was highly, highly politicized. But people think these kinds of decisions should be made by individuals, not Congress."

e-mail: jzremski@buffnews.com

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