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In America, candid, new discussion of last wishes

WASHINGTON - The end of Terri Schiavo's life won't end the arguments over the issues raised by her case, an unusual intersection of religion, politics and morality that sparked a national conversation about self-determination, the rights of one family and just how far into our lives the government should reach.

Like Karen Ann Quinlan and Nancy Cruzan before her, Schiavo's name is forever associated not with the woman she was before she suffered severe brain damage in 1990, but with the symbol she became: a martyr to some, simply a prolonged tragedy to others.

For many, however, she also was the trigger for a candid discussion with friends and loved ones about how they want their lives to end.

That - more than the political fallout or the brutal rift exposed in her family - will be Schiavo's legacy.

"People are talking about this, and they're telling each other what they think and what they would want," said James M. Hoefler, a political science professor at Dickinson College in Pennsylvania and the author of two books on end-of-life issues.

"As tragic as the case is, it's a wonderful opportunity for people to take control of their own lives and let people know what they want in ways that the state legislature can't touch," he said.

Aging with Dignity, a Florida-based organization, distributes a detailed living will form called Five Wishes. It allows people to specify who should make decisions for them, what kind of care they want, how they want to be treated and what they want loved ones to know if they become incapacitated.

The group, founded in 1996, typically gets 50 to 100 requests a day, said its president, Paul Malley. Last week, the number skyrocketed to more than 5,000. Over the past week and a half, more than 20,000 people have requested about 150,000 copies.

The National Hospice and Palliative Care Organization has received nearly 6,000 calls in the past two weeks, said Vice President Kathy Brandt.

However one feels about the political, medical and moral issues that have come to define the Schiavo case, Malley said, anyone can and should take steps to prevent what happened to Schiavo and her family from happening to them.

"That's something everybody can agree on," he said.

There is far less consensus about other aspects of the case. Opinion polls show widespread disapproval of the desperate and ultimately fruitless attempts by lawmakers to intervene, though some politicians are pushing ahead with efforts to change state and federal laws to make it more difficult to remove feeding tubes and other life-extending medical treatment, particularly when there is dispute over a patient's wishes.

In the final legal opinion issued in the drawn-out case - less than 24 hours before Schiavo died - a federal judge lashed out at President Bush and the Congress for pushing the case into federal court with a bill passed in a hurried weekend session and signed by Bush in the middle of the night.

But some conservatives are just as angry at the judges for what they see as a failure to adhere to the law, which they had hoped would result in the reinsertion of Schiavo's feeding tube and a reversal of years of state court decisions. Instead, a federal judge in Tampa, Fla., ruled that Bob and Mary Schindler, Schiavo's parents, were unlikely to prevail and refused to reinsert the tube.

The Schindlers spent seven years fighting son-in-law Michael Schiavo, who contended that his wife had made her wishes clear before the incident that left her brain-damaged that she did not want to live in a persistent vegetative state.

Again and again, the courts sided with him, despite protests, death threats and condemnation from some religious leaders.

"I think the long-term repercussions will be in the judiciary," said Paul M. Weyrich, director of the conservative Free Congress Foundation, who pressed politicians to jump into the case.

He said the way the case played out "is an indication of a federal judiciary which is so out of control that clearly something is going to have to be done."

After the flurry of activity to prolong Terri Schiavo's life, most politicians backed away from the case, saying they had done all they could. Yesterday, Bush and an assortment of lawmakers, including Senate Majority Leader Bill Frist and Sen. Mel Martinez of Florida, issued statements saying that their prayers were with the Schindler and Schiavo families and expressing hope that Terri Schiavo had found peace at last.

But House Majority Leader Tom DeLay, a Texas Republican, implied that there would be consequences for judges. "This loss happened because our legal system did not protect the people who need protection most, and that will change," he said. "The time will come for the men responsible for this to answer for their behavior."

Later, DeLay said: "We will look at an arrogant, out-of-control, unaccountable judiciary that thumbed their nose at Congress and the president."

A spokesman said DeLay was not implying that there would be an effort to impeach judges.

Hoefler said he is concerned that the furor over the Schiavo case might prompt tougher laws and make a difficult situation for families even tougher.

"I think the short-term outcome is a step backward if you think of the direction the country had been heading in as progress," Hoefler said. "It's certainly become easier and easier in the last 25 years for people to control the end of their lives. ... And it's going to get a little harder now, I think, with some of the pro-life, culture of life, forces that have really kind of congealed around this case."

That fear has prompted many of the calls to the National Hospice and Palliative Care Organization, Brandt said. The group has distributed tens of thousands of advance directives, and pleads with people to not only sign them but share the contents with others and review the document regularly.

"These are important things that we don't know when they're going to happen," she said. "We may not all live to be 80, 90, 100, and so we need to take steps now, when we're not in the middle of a crisis, when emotions are running high and there may not be the opportunity to have those conversations."

Writing a living will - and spreading the word about what it says - is the best way to guard against ending up like Terri Schiavo, Hoefler said. It's much harder for a spouse or family member to challenge the removal of life support when your wishes are well known to everyone around you, he said.

As wrenching as her case was, the spotlight it cast on the importance of living wills is a positive development, experts say.

"I think it's to the point now where people feel comfortable enough about it because it's somebody else," Hoefler said. "It's given us a reason to have a conversation that never would have happened otherwise."

Copyright © 2015, The Baltimore Sun
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