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Schiavo's legacy may live in debate

End-of-life issues may never be addressed the same after the unprecedented intervention in her case.

By WES ALLISON
Published March 27, 2005

WASHINGTON - As he haunted the marble corridors of the U.S. Capitol last week, Bobby Schindler often met members of the House in Statuary Hall, a grand anteroom ringed with statues of the men whose struggle against tyranny led them to build a nation of balanced powers, where liberty for all might trump the morality of the day.

Schindler, 40, a Catholic school science teacher, is good-looking and well-spoken, and many lawmakers found him persuasive. Please save my sister, he begged them. Don't let Terri die. What's the harm in letting the courts take one more look?

The legislation that followed, though ultimately unsuccessful, was extraordinary for the level of congressional involvement in one family's pain.

But polls show most Americans, including most evangelical Christians, believe the government should have stayed away. And with millions of Americans making similar end-of-life decisions every year, Terri Schiavo's greatest legacy may be forcing Americans to address the deeper, nettlesome issues that have framed her case.

Such as:

In making policy, how do we square religious conviction with scientific evidence?

How do we discuss medical ethics at a time when technology is outpacing our ability to consider the ramifications?

And when faced with a conflict between life and liberty, two founding ideals of the American promise, which one should prevail?

As soon as Gov. Jeb Bush ended his press conference at the state Capitol on Wednesday, after unsuccessfully urging the state Senate to keep Terri Schiavo alive, he huddled with his staff at the lectern, and they prayed.

In their daily e-mail updates about the case, evangelical Christian groups leading the campaign asked their supporters to pray. When news arrived on March 18 that her feeding tube had been removed, the protesters camped outside Schiavo's room at Woodside Hospice in Pinellas Park dropped to their knees to pray.

All of which made the Rev. Frederick Schmidt, an Episcopal priest and theologian at Southern Methodist University in Dallas, wonder: Why wasn't letting Schiavo die a Christian option, too?

"I think the religious right is captive to a medical, scientific description of life that equates merely to survival," said Schmidt, director of spiritual life and formation at SMU's Perkins Graduate School of Theology.

"But Christians can say no, life is broader than that . . . and to let someone go under these circumstances is perfectly appropriate."

He and other scholars say the religious, moral argument in the Schiavo case was largely one-sided. Though polls show a strong majority of mainline Protestants disapproved of Congress' actions, they and their religious leaders allowed conservative Christians to carry the debate, as they've done with embryonic stem cell research and gay marriage.

It's more than academic. Just as conservatives realized 20 years ago they could not afford to sequester themselves from public affairs, moderates risk becoming culturally and politically irrelevant if they withdraw.

Evangelical Christians "have become the moral edge in the country, because there's no one else articulating a moral religious view," said Dr. Robert Blendon, professor of health policy and political analysis at Harvard University.

"Something has happened to the moderate, mainstream Protestant church. They should be arguing this is a moral issue, and there is another side."

The dispute over Schiavo has been cast in terms of the religious versus the secular. But that's an artificial line, "because most Americans want some sort of moral religious perspective in their lives," he said.

The moral judgments that help us decide when life begins help us decide when life ends. The Catholic church teaches that life begins at conception; it used to teach that life began at quickening, some 40 days into pregnancy. Are we dead when our brain no longer functions? Or only when our heart stops?

"Science can never adjudicate the boundary between life and death," said Dr. Barbara Koenig, a medical anthropologist and former head of the Center for Biomedical Ethics at Stanford University. "That is fundamentally a social assessment."

It doesn't help that many of the terms - brain death, coma, persistent vegetative state - are largely subjective. "People think these are real states that exist in nature, and we can somehow magically measure them using machines," Koenig said. "No, no, no. It's extremely difficult."

The law Congress passed applied only to Schiavo, and experts in constitutional law and bioethics are sorting out what it might mean for future cases. At the very least, Congress' intervention has given people one more thing to consider as they make end-of-life decisions. Blendon suspects the impact will be even more wide-ranging.

"It has changed the federal-state relationship, and changed the notion of choice for the end-of-life movement," he said. "It also shows the enormous power if religious groups organize in politics and stay with it. They can get disproportionate returns from the system."

In a glass case in the Rotunda of the U.S. Capitol, between the House and the Senate, is a gold-plated copy of the Magna Carta, the document that once affirmed that even the king of England wasn't above the law. Five centuries later, it formed the basis for the American Bill of Rights, including the Fifth Amendment: "No person shall . . . be deprived of life, liberty, or property, without due process of law."

One of the most striking things about last week's congressional action was that Republican leaders were eager to get involved at all, and that the Democrats let them, analysts say.

What started as a long-shot bid by a handful of conservatives, led by Sen. Mel Martinez, R-Fla., and Rep. Dave Weldon, R-Palm Bay, ended up bringing Congress back from Easter break, with lawmakers using the floor of the House of Representatives to expound on all sorts of injustices: That Michael Schiavo never gave his wife therapy. That she was never allowed outside. That she communicates. That she had never had a brain scan.

All galling, and all wrong. Constitutional scholars quickly denounced the law. Critics saw it as a raw attempt to curry favor among evangelical Christians, who helped the GOP keep the White House and add seats in Congress last fall.

An internal memo reminded Republican Senators that "this is a great political issue," because it puts Democrats on the spot, and "the prolife base will be excited. . ."

President Bush lauded it for advancing the American "culture of life," a victory for morality.

Elizabeth Foley, an expert in bioethics and constitutional law at Florida International University in Miami, has studied the court record, and she questions whether Michael Schiavo met the state's legal standard for proving his wife would rather be dead.

But once the state court ruled, she says, the law and the separation of powers should have applied. When the founders wrote the Bill of Rights, they wanted protection from both the tyranny of the majority and the waves of religious persecution that periodically rocked Europe and the colonies, Foley said.

"Is it okay for the government to act solely on the basis that it thinks an act is immoral?" Foley said. "And I think that question has clearly been answered in the constitution, in the form of no.

"For the government to act to restrict liberty, you have to have something more than moral disapproval."

Even the people Congress hoped to please are uncomfortable with its reach. A CBS News poll released Wednesday found that two-thirds of evangelical Christians and conservatives opposed the Schiavo law. Other polls have reflected similar results.

The lesson is that holding moral reservations about an individual case doesn't necessarily translate into a desire for congressional action.

Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania, has received 3,000 e-mails about the case in the past week. At first they overwhelmingly favored feeding Schiavo. But as people began absorbing what Congress had done, the mood changed.

"When you have people on the floor of Congress saying the judge is wicked, that the Florida courts don't know what they're doing, that Michael Schiavo is a fiend - instead of being ethical, it starts to sound coercive," Caplan said. "It almost starts to sound bullying."

Tom Palmer, a senior fellow at the Cato Institute, a libertarian think-tank in Washington, said the Schiavo law is part of a larger trend toward what he calls a results-oriented approach to policy. It's akin to the proposed constitutional ban on gay marriage and President Bush's education policy, No Child Left Behind, which has expanded federal control of local schools.

In those cases, Republican leaders ignored their philosophy of reducing the scope of federal control because "they didn't like that many of the states, from their perspective, were getting it wrong," Palmer said.

"I think I am willing to have states do things even when they get it wrong, because the principle of federalism is more important than getting it right or wrong on one particular case," Palmer said. "But I think many people in politics don't feel that way anymore, and I find that unsettling."

The video images of Terri Schiavo showed it: eyes blinking, head lolling, wrists curled, the occasional smile. But is she awake, or gone forever?

The Schiavo story has unfolded against the backdrop of unprecedented medical advances, along with an increase in the difficult end-of-life decisions that come with living longer.

As Jessica Berg walked back to her office after giving a lecture at Case Western Reserve University's medical school on Wednesday, she passed clumps of students debating the Schiavo case. She's a vegetable, brain dead for 15 years. She recognizes her family and could recover. Let her die. Let her live.

"It's almost like there are two separate cases going on here," said Berg, an associate professor of both law and bioethics.

Not surprising, given the divergence of opinion about what is fact.

"What is a persistent vegetative state? Is it a coma? I heard people wake up from coma. What does it mean, that she won't get any better? Why not? We hear all the time about new treatments. . . . Maybe we haven't tried the right thing.

"All of these things challenge our ability to even have the discussion about ethics," Berg said.

Caplan, the Pennsylvania bioethicist, said the Schiavo case underscores a common contradiction in the way people think about medicine: They have great faith in its power to heal, yet that faith often turns to mistrust when medicine fails.

"It's sort of around, you hear it: "I don't know if I can trust these doctors, don't miracles happen?' " Caplan said.

Divining truth will only get harder as science creeps closer to the cellular beginning of life, and as medicine pushes us further from death.

Now, an estimated 1.5-million families decide to withhold or withdraw life-sustaining treatment each year. Last year, nearly 1-million people died in hospice care.

While family disagreements aren't rare, families rarely ask government to step in. Maybe a handful of cases a year reach a court, Berg said. She can count on one hand the number that have drawn the attention of elected state officials. And the number that made it to Congress?

One.

Will it be the last?

The conventional wisdom here, the one thing everybody can seem to agree on, is that the tragedy of Terri Schiavo will motivate Americans to get a living will, to put their wishes in writing. Lawyers already report a flood of requests for advanced directives. Sen. Bill Nelson, D-Fla., wants Congress to require driver's license offices to offer them, just like organ donor and voter registration forms.

But there is another lesson here, too. A living will isn't a panacea. The decisions are still hard. It is impossible to plan for every circumstance. People change their minds. You never know what God might do.

In Schiavo's case, the courts repeatedly affirmed Michael Schiavo's position, that his wife would not have wanted to live this way. But her parents' doubt and their supporters' discomfort with the finality of the decision were enough to move Congress.

Koenig, the Stanford bioethicist, said the American medical system's dogged determination to keep patients alive makes this tougher.

When dawn finally breaks on a world without Terri Schiavo, when the protesters roll up their signs and Woodside Hospice once again belongs to the dying, society still will be left to ponder: In a culture of life, how should we handle the inevitability of death?

"This is a really uniquely American problem, the idea that it's appropriate to sort of stop every death from happening for as long as possible. We sort of have this idea that we keep pushing, pushing, pushing, and only at the last minute do we stop," Koenig said.

We just aren't very good at stopping. "Face it. When you have to decide, do you want to die, or not want to die, what are people going to choose?"

[Last modified March 27, 2005, 00:35:15]