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`The Face That Changed The Nation`

Published: Mar 31, 2005

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TAMPA - Years before the Terri Schiavo case erupted into a national sensation, Dolores Mumford and her husband, Olin, who have been married 51 years, got their affairs in order.

They chose cemetery plots near their home in Town 'N Country. They drew up wills. They detailed their wishes in case they couldn't speak. They specified someone to be in charge.

Then, although such difficult matters seemed resolved, along came the Schiavo furor. It unsettled Dolores Mumford. Now she worries the government might not honor her ``living will.''

``The government should stay out of it. I don't want somebody telling me what I can or can't do in a family matter,'' she said. ``If they do this, what else will they try? Leave my courts alone. Leave my family life alone.''

Mumford, 72, is no activist. She is a lifelong, churchgoing Republican who until recent weeks considered herself a strong supporter of Gov. Jeb Bush.

``He's fallen so far in my estimation. A number of them have.''

Such shifting sentiments amid citizen anxiety over personal preparations for death and the reach of government suggest some far-reaching legacies of one of the most disturbingly poignant life-and- death cases of recent times.

The drawn-out struggle over the end of life of a severely brain damaged woman, who remained virtually unknown even to prominent Americans who spoke out or rendered judgments in a public morality play over her fate, may exert a force for years.

An escalating storm of media coverage, politics and legal sparring elevated the insurance clerk with a fondness for Danielle Steele novels from bedridden anonymity in a Pinellas Park hospice to a national symbol in a debate about the value of life and the rights of the incapacitated.

Already, many Americans have been awakened to the need to prepare clear instructions in the event they or loved ones lack the ability to speak for themselves in the medically managed twilight of life.

Her story also has galvanized conservatives and religious groups, deepening rifts already apparent in the November elections while boosting fundraising by conservative groups and resolve among Republican leaders who vow to champion a ``culture of life,'' even if it means federal intervention in the decisions of state courts and legislatures.

A Challenge For Government

The case served as a unique test of government itself - which seems to have survived the challenges. Despite extraordinary efforts by Congress and President Bush, who returned to Washington solely to give Schiavo's case another hearing in the courts, federal and state judges stood firm.

Despite the will of a majority of representatives of the people, walls between branches of government and between Washington and state governments held firm. Despite multiple appeals, judges did not waver.

``This case hasn't made any law,'' Stanford University law Professor Pamela Karlan said. ``Instead it forced a lot of people to think about making clearer to people around them what their wishes are.''

Meanwhile, maneuvering by politicians, whose motivations appeared at times a mixture of heartfelt and Machiavellian, may have long-term effects in public life.

A person's stand on the Schiavo case could become a test of candidacy or judicial nomination.

``This is arguably as big as Roe v. Wade. It's a seminal event,'' said David Stevens, a doctor who serves as executive director of the Christian Medical Association, referring to the 1973 Supreme Court decision legalizing abortion.

Stevens, a close friend of the neurologist who helped Gov. Bush in a last-ditch effort to gain custody of Schiavo so her feeding tube could be reinserted, predicts escalating skirmishes over caring for the severely incapacitated and terminally ill.

``This will resonate in judicial appointments and on the political front. People feel strongly and deeply about this. They talk about it around the water fountain. Politicians see it as a political issue. Some see medicine as the source of salvation; others have a worldview where autonomy is important to them.

``We've had the perfect storm. If you were going to write a soap opera, this is how you were going to write it: an estranged husband, a question about diagnosis, and motives about money. The soap opera became a morality play. And it's only begun.''

Shoring Up Support

Republicans are likely to use the Schiavo case to shore up support among religious conservatives and sow doubt in 2006 about the stance of Democrats such as Florida Democratic Sen. Bill Nelson, of Tallahassee.

Those tactics may prove successful - or backfire.

Bentley Lipscomb, state director of AARP, suspects that while polls showed some 60 percent of the public objecting to government intervention, that number would be 70 percent of higher or higher among people 60 or older. These people ``don't want to be a burden on their families,'' he said. In Florida, such attitudes could spell trouble for the GOP.

``If these politicians think they will obtain more votes with their latest move, they have just lost mine,'' Lurita L. Soprano, a Roman Catholic from Spring Hill, said in a post on the Tribune's online publication, TBO.com, during final skirmishing over Schiavo. ``I voted for George W., Jeb and [U.S. Sen. Mel] Martinez, R-Orlando, but I will never vote for them again.''

Echoes of the Schiavo skirmishes also could be heard in the governor's race. U.S. Rep. Jim Davis, D-Tampa, took a highly visible stand against congressional attempts to sustain Schiavo's legal case. Though launching a race for governor, he felt too strongly about Congress' ``abuse of power'' to be cautious, he said.

Advocates for the disabled, meanwhile, hope they can be heard through the ideological noise.

``It's very obvious that people who identify with religious and pro-life groups were driving this thing and will now drive harder,'' said Diane Coleman, president of Not Dead Yet, a disability rights group in Forest Park, Ill. ``Both of the extremes want it to be a culture war - the right to die versus the right to live - but they're wrong. This should be about disability rights.''

Coleman hopes the attention given the Schiavo case will lead to hearings in Congress on giving government and society more oversight on guardians who may not act in the best interests of the incapacitated. ``Euthanasia is the ultimate form of discrimination,'' she said.

Other people think the Schiavo case opens for public debate perplexing questions about sustaining human life that may not be worth living - or is always worth saving.

Where Medicine Stands

Huge medical advances enable doctors to prolong lives, even when patients are in pain or so brain damaged they are unlikely to have much of a life.

The independent Institute of Medicine in 2002 urged health care practitioners to improve care of the dying and chronically ill. Many hospitals still do not offer end-of-life services and palliative care.

The American Medical Association has noted, in a formal policy statement, that ``some technologies have resulted in merely prolonging the suffering of dying patients.'' The AMA has urged society to address ``the needs of people suffering during the terminal phase'' of life.

Some argue, as have Schiavo's parents and siblings, that vulnerable people who cannot speak for themselves are entitled to whatever medical science can do to keep them alive.

U.S. Rep. Tom DeLay, Republican leader in Congress, said: ``God has brought ... us ... Terri Schiavo to elevate the visibility of what is going on in America, that Americans would be so barbaric as to pull a feeding tube out of a person that is lucid and starve them to death.''

As baby boomers age, debates such as this may be the legacy of Schiavo.

Hers hardly was the first life- and-death case to make headlines. Many Americans grapple with such difficulties every day. Every year, at least 1.5 million families decide to withhold or withdraw medical treatment.

Yet the Schiavo feud - tracked globally by round-the- clock cable television, a deluge of specialized TV channels and Web sites, many with an ideological bent, and spurred on by the effect of interest group lobbying and grass-roots e-mail campaigns - seems to have awakened many Americans to the need for ``living wills.''

``I'd never worried about it before,'' said Tony R. Williams, a retired airline cargo handler now living in Lutz.

Williams and his wife, married for 45 years, had a living will, but the furor over Schiavo sent them scrambling back to the document to make sure it spelled out never having a feeding tube foisted on them.

``I want to make sure it covers all possibilities,'' said Williams. ``If it's not in there, I'm going to change it [to] where it covers that feeding tube. I'm calling my lawyer.''

In Schiavo's final days, organizations such as Aging With Dignity and Living Will Registry fielded tens of thousands of requests for living will templates.

Near the end, Bobby Schindler, her brother, spoke of Terri's legacy. Hers was ``the face that changed the nation'' by forcing Americans to grapple with the difficulties of the disabled - and their own deaths, he said. ``If my sister does die, I think it's done a lot of good for a lot of people. It puts mortality on their doorstep.''



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