Disability Rights Take Stage in Statehouses

The arguments surrounding Terri Schiavo (search) will live on in statehouse debate and new laws if an emerging coalition of disability rights activists and right-to-lifers succeed in turning the national agony over her case into a re-examination of when and how our lives come to an end.

So far, only a few legislators in a handful of states have sought significant changes to their laws, which define the fundamental elements at stake — how a person can set limits on their medical care, who gets to decide what their wishes are, what evidence is needed to prove it.

None have yet become law and the chances for most, if not all, are slim this year, with some legislatures finished and many far along in their work for this session. But both Republicans and Democrats say the arguments aren't going away.

The debate is an effort to strike a new balance between one stance that argues that medical care and morality mean life must be pursued in nearly all cases, and another stance, crafted over decades of changing views about death, that some may choose to end drastically damaged lives that depend on artificial means.

"I really wanted to make sure we gave a default for life and not for death," said Kansas state Rep. Mary Pilcher-Cook, a Republican who helped revive a measure that would give courts a greater chance to review decisions to end life-sustaining care, lessening the role of guardians or doctors. "Our most vulnerable citizens are in fact in the most danger of losing their life without any recourse."

She was joined in her effort by disability activists, many aligned with liberal causes, and Democrats in the state House. The measure stalled in the Kansas Senate, however, as the session ended for the year last Friday.

"We don't want to get into the politics of the right or the left or whomever," said Michael Donnelly at the Disability Rights Center (search) of Kansas. "This isn't about politics, this is about how we value or don't value the lives people with disabilities have."

His group had been working for years to revisit the issue, and came together with several conservative legislators to move the bill forward. Elsewhere, the National Right to Life Committee (search) has produced model legislation and is working with legislators in several states.

Legislation has also been introduced in Alabama, Hawaii, Louisiana, Minnesota and South Dakota. The Louisiana bill is called the "Human Dignity Act"; Alabama's is the "Starvation and Dehydration Prevention Act."

Many measures predate recent weeks of attention to Schiavo, though some drew their inspiration directly from the agonized public debate over the 41-year-old woman's death — like one in Missouri introduced last Thursday, the day Schiavo died.

"I was gripped by what I was watching and couldn't believe the state of Florida would let this woman die in this manner," said GOP state Rep. Cynthia Davis. Her bill would bar anyone from directing that artificial food and water be withheld or withdrawn without a specific written directive from the patient.

There's also a slew of legislation around living wills and other end-of-life issues that wouldn't further the aims of this emerging group — like a Nevada measure that would let a guardian end life-sustaining measures even if it's against a patient's known wishes, as long as it's in their best interests.

The views of medical care and ending life have shifted over the past 30 years as the country grappled with brain-damaged or coma-bound patients whose families said they shouldn't be forced to live a life they wouldn't want, starting with Karen Ann Quinlan (search) in 1975, then to Nancy Cruzan (search) in 1990 and now to Schiavo.

Critics say the medical community and society have gone too far. "When original advance directives were created, nobody contemplated that hospitals would refuse to treat ... It was usually just the opposite, doctors refusing to pull the feeding tube," said Burke Balch, director of the National Right to Life Committee's medical ethics center.

Now, he says, the presumption in the hospitals, the courts and in too much state legislation, is to go ahead and pull life-sustaining treatment when there is not enough evidence that the patient wanted it.

Doctors and bioethicists say that overwhelmingly, safeguards exist in hospitals and in courts to ensure that patients' and families' wishes and best interests are protected.

"Are they going to go out and undo all the hard work that people have done to make sure they can die without having to go to court?" said Dr. Jean Teno, associate director at Brown University's Gerontology and Health Care Research Center.

Most decisions, unlike the portrayal of critics, are made by doctors and families working together, she said. "My sense is that this approach is working."

Political agendas are hard to discount, as congressional leaders raise dire warnings against judges in Florida and Washington over their Schiavo decisions. That meshes with GOP efforts to put more conservatives in the judiciary.

But political stereotypes fell, too, with traditionally liberal leaders like Iowa Sen. Tom Harkin, the Rev. Jesse Jackson and Ralph Nader supporting Terri Schiavo's parents efforts to keep their daughter alive.

Advocates vow that the questions of civil rights and morality are going to win out.

"If there's any doubt, than life trumps death," said Donnelly, in Kansas. "I'm a quadriplegic, been that way for 28 years. I would hate for somebody else to decide my life is not worth living."