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Terri Schiavo’s legacy
The case of Terri Schiavo made it clear that there are no easy answers when dealing with brain-damaged patients who have not previously put in writing whether they would want to live or die in their compromised state.
Now, some state lawmakers are scrambling to find solutions.
Just as members of Congress and President Bush intervened in the final weeks of Mrs. Schiavo's life, lawmakers in at least eight states have proposed bills designed to avoid a recurrence of the seven-year end-of-life dispute among family members of the brain-damaged Florida woman, who died March 31.
"Lots of legislation has been proposed that would make it more difficult to withdraw nutrition and fluids from an incapacitated patient unless a patient has provided a written directive to that effect," said Alan Meisel, professor of law and bioethics at the University of Pittsburgh, who opposes such proposals.
It's uncertain whether any of the proposals will be enacted this year, because some state legislative sessions already are over and others end this month.
But lawmakers agree the issue will not go away anytime soon.
"Although Terri Schiavo very dramatically brought these issues to the attention of the nation, their importance did not fade or diminish with her loss," said Sen. Michael B. Enzi, Wyoming Republican and chairman of the Senate Health, Education, Labor and Pensions Committee.
The committee held a hearing last week on hospice care, legal tools for the disabled and whether any legislation might be warranted in the aftermath of Congress' Palm Sunday vote intended to clear the way to reinsert Mrs. Schiavo's feeding tube.
Dr. Michael Gauderer of Greenville, S.C., co-developer of the feeding-tube system in use today, estimates that about 279,000 Americans receive life-sustaining nourishment each year. The Brain Injury Association of America estimates that between 30,000 and 45,000 patients are attached to feeding tubes at any given time.
On the state level, a Michigan legislator is sponsoring a bill that would prohibit a married person involved in an adulterous relationship from denying food, fluids or medical treatment necessary to sustain the life of an incapacitated spouse.
Michigan Rep. Joel Sheltrown, a Democrat, said his proposal was sparked by the Schiavo case, in which Mrs. Schiavo's husband and guardian, Michael, led the fight to remove her feeding tube. Mr. Schiavo said his wife had made it clear several times before she suffered brain damage in 1990 that she would not want to be kept alive using artificial means.
Mr. Schiavo battled his wife's parents, Bob and Mary Schindler, who denied their daughter could not recover and sought to keep her alive. The Schindlers pointed out that Mr. Schiavo waited seven years to disclose his wife's purported end-of-life preference and did so only after becoming involved with another woman. He now has two children with the woman.
"While people in happier times may trust their spouse to make future medical decisions for them, situations change. People are not angels," Mr. Sheltrown said. "No one should be deprived of the right to life in a medical situation in which they cannot defend themselves."
Because Michigan law already prohibits the denial of life-sustaining treatment unless the patient has requested it, opponents and some in the press have accused Mr. Sheltrown of political grandstanding.
His measure faces an uphill battle, but Mr. Sheltrown doesn't have to worry about time constraints, as the Michigan Legislature is in session year-round.
Florida Gov. Jeb Bush, who first intervened in Mrs. Schiavo's case two years ago after state courts ordered her feeding tube removed, is considering the Michigan proposal for his state, but has not made a final decision, a spokesman said.
"We've had concerns about a possible conflict of interest that Mr. Schiavo had ... and we argued it in court," said Jacob DiPietre, the governor's press secretary.
"But we need time to let emotions and passions cool down a bit," he added. "We shouldn't legislate on the margins. We should look at things closely ... but it was definitely a concern."
Jay Sekulow, chief counsel for the American Center for Law and Justice, a public-interest law firm that specializes in constitutional law and protection of human life, said such end-of-life legislation is needed in all states.
"When a spouse [of an incapacitated patient] has another family, he can't possibly be looking out for the best interests of the patient. He has a conflict of interest," Mr. Sekulow said.
However, Kenneth W. Goodman, director of the bioethics program at the University of Miami, says the proposals are "preposterous" and "wouldn't work."
"End-of-life legislation can always be improved, but [changes] must be deliberate, incremental and cautious," he said, adding that it's a "bad idea to tinker with state or federal law" based on circumstances in one case.
"But for this weird [Schiavo] case," where her husband and parents fought over removing her tube for seven years, "we would have done just fine in Florida and everywhere else" with existing law, said Mr. Goodman, who is also co-director of the Florida Bioethics Network, a group of ethicists that consults with hospitals about end-of-life care.
Two other bills introduced in Florida that would have prohibited the withdrawal of nutrition and/or hydration from people deemed to be either incompetent or in a persistent vegetative state already have failed, the governor's office said last week.
In Alabama, legislators are considering a bill called the Starvation and Dehydration Prevention Act, which would bar removal of a feeding tube without express advance written instructions from the patient. The bill is pending in the House Judiciary Committee.
However, its sponsor, Republican state Rep. Dick Brewbaker, said he is not sure if the legislation is broad enough, because it would "apply only where there are disputes between family members." He said he may withdraw the bill and "write a better one" for introduction next year.
A similar measure, called the Nutrition and Hydration Presumptive Act, has been introduced in the Minnesota state Senate, according to Rachel Tanner, policy analyst for the Health Policy Tracking Service. The bill is pending before the Health and Family Security Committee.
In Louisiana, state Sen. James David Cain, a Republican, has introduced a bill that would stipulate that food and water could be withheld only if a person directed such action in a living will, or if food and water could hasten death or cause extreme discomfort.
"No one won in Florida, and I wanted to find out if this could happen in Louisiana. ... We found out it definitely could because our law dealing with living wills is vague," Mr. Cain said.
"We presumed people don't want to be starved to death," he added. While acknowledging his bill has generated some opposition, Mr. Cain said, "We go into session April 25, and I really think the bill will pass."
A bill introduced in Kentucky would have banned withholding nutrition and hydration from patients incapable of making such a decision or those who do not have an advance directive clarifying their wishes, but the state's legislative session ended before lawmakers took any action on the proposal.
Three similar bills introduced in the Hawaii Legislature also stalled, as did one in Kansas that would have reduced the role of guardians and doctors by giving courts a greater chance to review decisions to end life-sustaining care.
Mr. Goodman, the Florida bioethicist, called these proposals an "emotional response to a medical problem."
He said he objects to lawmakers "singling out one of thousands of medical treatments" for special laws.
But, Burke J. Balch, director of the National Right to Life Committee's Robert Powell Center for Medical Ethics, said such end-of-life legislation is necessary "because it creates a presumption of treatment" for patients who cannot make their own health care decisions.
Too often, "health care providers just assume that if you have a living will or other advance directive, you don't want treatment," he said.
All 50 states already have laws permitting people to write a living will or an advance directive, which spells out whether extraordinary means should be used to keep them alive if they become incapacitated.
"Two-thirds of states have legislation that prescribes who has legal decision-making authority when [an incompetent] patient hasn't left an advanced directive," the University of Pittsburgh's Mr. Meisel said. "So we just need similar statutes in the other third of the states."
Political considerations may be one reason lawmakers are moving cautiously with end-of-life legislation.
Most major polls indicated public opposition to congressional and White House involvement in the Schiavo case, and many Americans supported the decisions of state and federal courts either to remove or not reinstate Mrs. Schiavo's feeding tube.
A poll by Time found that seven in 10 Americans opposed legislation passed by Congress and signed by President Bush that allowed the Schiavo case to be heard in federal court. Two-thirds of the respondents in the poll taken March 22-24 thought the action had more to do with politics than moral values.
Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania, said he does not anticipate any major Schiavo-inspired legislation from Congress.
"Members of Congress looked at the polls and ran away," he said.
Despite the polls, both House and Senate members say there likely will be legislation introduced as a result of the Schiavo case, though it is still in the discussion stage.
Rep. Dave Weldon, Florida Republican, a practicing physician who led the Schiavo effort in the House, said he is "in discussions with various members about various options."
One option, suggested by Sen. Bill Nelson, Florida Democrat, would be to require Medicare recipients to have living wills, Mr. Weldon said. Medicare covers the elderly and disabled.
But Mr. Weldon and other Republicans, such as House Judiciary Committee Chairman F. James Sensenbrenner Jr., Wisconsin Republican, would prefer that the Senate simply pass the bill the House passed March 16.
That bill allowed a federal court review for Mrs. Schiavo's case, and would do so for similar cases involving incapacitated people whose wishes are in dispute. The Senate instead passed a narrower bill that applied only to Mrs. Schiavo, and the House reluctantly followed suit, in the interest of saving her life.
In the Senate, Sen. Tom Harkin, Iowa Democrat, who is active in disability issues, is working on crafting legislation to give disabled people whose wishes aren't documented access to court review before life is ended. Mr. Harkin doesn't agree with the House-passed bill because he said it could override a person's living will.
House Republicans also might seek to rebuke the courts, a House Republican aide said.
Many Republicans, including House Majority Leader Tom DeLay of Texas, thought the federal courts ignored the intent of their legislation by refusing to give Mrs. Schiavo's case a full review and by refusing to reinsert her feeding tube while the legal proceedings played out. The House Judiciary Committee is reviewing options and will report back to the full Republican Conference, the aide said.
Sen. Sam Brownback, Kansas Republican, said legislation aimed at the courts' actions probably will be the first to move on Capitol Hill.
"That's the one people are most upset about," he said. "Courts should protect the innocent."
Amy Fagan in Washington contributed to this report.
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