WASHINGTON—Congress should step into right-to-die controversies such as the Terri Schiavo case only rarely, but sometimes intervention could be warranted, a leading advocate for people with mental disabilities told senators Wednesday.
Federal intervention could be justified when the patient has left neither clear advance orders nor other "reliable ... and convincing expressions" of autonomy, according to H. Rutherford Turnbull, co-founder and co-director of the Beach Center on Disability at the University of Kansas.
Congress also should intervene when the disagreement between family members over a terminally ill relative is irreconcilable or when the patient isn't near death but would die if treatment were withheld, Turnbull told the Senate Health, Education, Labor and Pensions Committee.
Those circumstances mirror the ones surrounding the emotionally searing and politically charged debate over Schiavo's death March 31, 13 days after her feeding tube was removed at her husband's request and over her parents' objections, with the approval of Florida state courts. Doctors had testified that she'd been in a "persistent vegetative state" since suffering irreversible brain damage 15 years before. Her husband maintained that she'd previously told him she wouldn't want to live by artificial means.
Days after Schiavo's feeding tube was removed, Congress passed a law, which President Bush signed, strictly tailored to move her case from Florida courts to federal ones. Republicans led the effort.
A series of federal courts, including the U.S. Supreme Court, all ruled against overturning the state court's ruling and ordering the feeding tube reinserted.
Turnbull, whose 37-year-old son has had severe mental disabilities since birth, said before the hearing that his concerns were for "people who are not sufficiently competent to always make decisions on their own behalf."
He was part of a panel of national experts who testified Wednesday on issues related to brain damage at Congress' first inquiry since Schiavo's death. The panel took no action.
"Terri Schiavo very dramatically brought these issues to the attention of the nation, and their importance did not diminish with her loss," said Sen. Michael Enzi, R-Wyo., the panel's chairman. "We as a nation all need to focus on what actions are appropriate under the tragic circumstance in which someone cannot direct his or her own health care."
Congress' intervention sparked a public backlash, with majorities reaching more than 80 percent telling pollsters they didn't think Congress or President Bush had any business getting involved in the case.
The remaining bitterness spilled into Wednesday's hearing.
"All of us who followed the tragedy of Terri Schiavo have asked ourselves what we would do if she were part of our family," said Sen. Edward Kennedy of Massachusetts, the committee's ranking Democrat.
"But one thing is sure: Families facing these painful decisions deserve better than political theatrics from the United States Congress. Republican leaders abused their positions of power to play politics with Terri Schiavo's life," Kennedy said.
Sen. Richard Burr, R-N.C., who arrived late and missed the experts' testimony, said he thought such criticism was unfair. He said he was disappointed that the courts didn't permit further lifesaving steps for Schiavo. "We should set a precedent that you don't stop," he said. "You don't go over it like a speed bump."
Several experts said the controversy had made the public more conscious of the need to plan for such situations.
"Most families spend more time planning for their annual summer vacation than they do for a health-care emergency," said J. Donald Schumacher, the president and chief executive officer of the National Hospice and Palliative Care Organization.
He said less than 20 percent of Americans had taken steps to prepare advance directives, and that 25 percent of those older than 45 said they wouldn't raise the issue with parents, even if a parent had a terminal illness.
"This issue could have resulted in a very peaceful death several years ago had Mrs. Schiavo's wishes been written down on a piece of paper and made known to her family and friends and given to a physician," Schumacher said.
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(Goldstein reports for The Kansas City Star.)
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(c) 2005, Knight Ridder/Tribune Information Services.
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