The Terri Schiavo case

Terri Schiavo died on March 31, two weeks after the feeding tube that kept her alive was removed under a court order. For the last 15 years of her life, she had existed in what her doctors described as a state without conscious mental activity. Her motor functions and some reflexes continued.

Schiavo’s case became unique. Not because of her medical condition and death. Unfortunately, these cases and the wrenching choices that go with them are all too common. It is because her case was hijacked by the religious right and a sensation-seeking media.

These forces made Terri Schiavo a cause celebre, which eventually involved every level and branch of the Florida and U.S. governments.

This case has rightly been called a tragedy for Terri Schiavo, her husband and parents. But it is a tragedy that had specific causes originating in the U.S. health-care system and a society based on market forces rather than human needs.

Many disabled activists have voiced concern over Terri Schiavo and the manner of her death. They have a real fear that in a class-based, profit driven—and often bigoted—society, disabled people may be seen as disposable, especially in a climate of scarce financial resources.

Even living wills, which allow patients to specify their health-care wishes in the event they are unable to competently express themselves, are subject not only to legal challenges, but may be ignored. Severely disabled people may be pressured to agree to procedures and sign documents which do not reflect their true wishes. (Naomi Jaffe, Common Dreams Newscenter, March 28)

This reasonable concern was cynically and hypocritically manipulated by right-wing religious and political forces in order to push their own agendas—which have little to do with the rights of disabled people, or even the “right to life.”

On the weekend of March 21—following a week in which Medicaid funds were drastically slashed by $15 billion—right-wing Republican politicians pushed an unprecedented bill through Congress to override the Florida court’s decision to remove Schiavo’s feeding tube.

Senate Democrats agreed not to challenge a voice vote for a similar bill in the Senate. President George W. Bush flew back from his Texas ranch and signed the bill into law in the middle of the night.

A chorus of media outlets, including much of the mainstream media, jumped on the right-wing bandwagon, viciously attacked Schiavo’s husband Michael Schiavo, and gave an almost unchallenged forum to a parade of right-wing bigots.

The real reason for the Republican interference in personal medical decisions affecting Terri Schiavo was contained in a confidential Republican Party briefing note that was leaked to the media. According to the document, the tactical advantage of championing this issue was twofold: “the pro-life base will be excited, [and] this is a great political issue, this is a tough issue for Democrats.” (Scott Piat kowski, Rabble News Weblog, March 24)

The gambit may have overreached. The entire federal and Florida state judiciaries rebuffed the overture. And national polls showed overwhelming disapproval of Congress’s action.

Who killed Terri Schiavo?

In 1990, Terri Schiavo suffered from bulimia, an eating disorder in which the victim regurgitates food after eating in a attempt to “become thin.” Many health-care professionals believe that for women, bulimia is at least partly caused by unrealistic societal portrayals of feminine beauty pushed by big-business sexist advertising.

The bulimia and a massive daily intake of caffeine led to a chemical imbalance in Schiavo’s blood, specifically a lack of potas sium, which brought on a heart attack. Her brain was deprived of oxygen for more than five minutes and she suffered massive brain damage. (Mary Jo Malone, St. Peters burg Times, April 24, 2001)

Terri Schiavo’s husband, Michael, and her parents Bob Schindler and Mary Schindler, faced a largely uncaring, profit-driven health-care system. With only modest means, they struggled to provide for Schiavo’s care.

Michael Schiavo raised $10,000. He flew to California to try extraordinary therapies for her. He moved into the Schindler home and became a registered nurse.

Facing declining resources, Michael Schiavo and the Schindlers sued Terri Schiavo’s doctors and insurance company.

Incredibly, her doctors had failed to take even a single blood sample that could have revealed the chemical imbalance.

They won the lawsuit. But the actual award was far less than they had expected: $300,000 for Michael Schiavo’s “loss” and a $700,000 “trust fund” to take care of Terri Schiavo. This may appear to be a lot of money. But it is not a lot to care for a severely disabled young woman, with no chance of recovery, for the rest of her life.

The initial solidarity of Schiavo and
the Schindlers broke down over who should control these unexpectedly small resources. Soon the matter was in court as the Schindlers and Michael Schiavo disputed everything from Terri Schiavo’s guardianship to what her wishes for life or death would have been. (Malone, St. Petersburg Times)

Whose right to life?

During the last weeks of Terri Schiavo’s life, the media were filled with posturing right-wing ideologues striving to “save Terri’s life.” Closer examination shows that these fulminations were worse than hypocritical—they were cynical to the extreme.

In Houston, on March 15—just before President Bush rushed off to Washington, D.C., to “save Terri Schiavo’s life”— a severely disabled Black infant named Sun Hudson was removed from the ventilator on which his life depended by the Chil dren’s Hospital administration.

It was done over the strenuous objections of his mother Wanda Hudson. (Houston Chronicle, March 17) Sun died a few minutes after the ventilator was removed.

The hospital acted under the authority of a law signed by George W. Bush when he was governor of Texas. This law allows hospitals to disregard patients’ wishes for continued treatment as long as a panel of doctors and medical ethicists declare that “there is no hope.”

The law had the endorsement of Texas Right to Life when it was signed in 1999. (Newsday.com, March 22)

According to Mario Caballero, a legal assistance fighter for the poor who represented Sun Hudson’s mother, the law discriminates against poor people. Patients are given only 10 days to either find another hospital that will accept them or file an appeal. (Houston Chronicle)

In an interview with right-wing talk show host Bill O’Reilly, Caballero re-sponded to a question about why the infant wasn’t transferred:

Caballero: Well, we tried to get a transfer to happen. Part of the problem with transferring a person from one hospital to another is that the hospitals are the ones that—they don’t take a transfer request from an individual.

O’Reilly: Right.

Caballero: It has to come from the hospital. The hospitals communicate to each other and we, we’re having an adversarial relationship with the hospital [Texas Children’s]. But the, the—I think her rights were violated. These are decisions that the mother ought to make. And what we really have here is not an ethical issue but it was a financial issue. (Newshounds Online, O’Reilly Flip-Flop, transcript of the O’Reilly Show, March 23)

Elizabeth Sjoberg, an associate general counsel with the Texas Hospital Association, helped draft the 1999 law. She says that “it added various procedures to ensure that a patient’s final wishes regarding care were carried out, while still protecting the hospital if it determined that care should be stopped for terminal or irreversibly ill patients.” (Newsday .com)

One wonders just what sort of “protection” Texas Children’s hospital needed from a six-month old infant.

Your money or your life!

In Florida, Gov. Jeb Bush intervened mightily in the Terri Schiavo case. In 2003 he went so far as to literally kidnap her from her hospice bed in order to “save her life.”

Yet advocates for the developmentally disabled are saying that Florida has enough money to drastically reduce a 15,000-person waiting list for state services—but the agency in charge of the disabled won’t spend the money! (The Terri Schiavo Story, A&E Network, March 31)

Florida activists have charged that the Florida Agency for Persons with Dis abi lities has a surplus of $30 million to $92 million, but refuses to spend it. In the meantime, at least two severely disabled people on the waiting list died recently after being removed from 24-hour care, and a third was hospitalized following a medical emergency. (Tampa Tribune, Mar. 28)

Donald L. Bartlett and James B. Steele have detailed the U.S. health-care system in their book “Critical Condition: How Health Care in America Became Big Business and Bad Medicine.”

They write: “We spend more money than anyone else in the world—and have less to show for it. We have a second-rate [insurance] system that doesn’t adequately cover half or more of the population. ... We charge the poor far more for their medical services than we do the rich. ... We have a system in such turmoil that almost everyone involved is unhappy—patients, doctors, nurses, aides, technicians. Almost everyone. But for a lucky few, the turmoil is worth a lot of money.”

One of the lucky few is Bill Frist, the Republican Majority leader of the U.S. Senate, who played a pivotal role in pushing through the bill to “save” Terri Schiavo. Perhaps because he does not practice med i cine anymore, he was able to diagnose Terri Schiavo’s condition without even examining her!

Frist is a heart surgeon and a staunch advocate of free-market medicine. He entered the Senate already a millionaire thanks to his father and brother. They founded what has become HCA, Inc.—the biggest hospital chain in the United States, with more than 200 hospitals and revenues of $21.8 billion in 2003. Over the years, HCA derived about one-third of its revenue from the federal government’s Medicaid and Medicare programs.

In addition to owning the most hospitals, HCA has another dubious distinction: The company has defrauded Medicare, Medicaid and the military’s health-care program TRICARE of more money than any other health-care provider in the United States. This is no small achievement in a field where the competition is intense.

In all, HCA paid a total of $1.7 billion to the federal government in fines, restitution, criminal judgments and to settle Medicare over billing claims. (Bartlett and Steele, p.72) It is a safe bet that this sum is tiny compared by HCA’s profits over the same period.

It is evident that capitalist politicians and their right-wing religious allies care little for anyone’s life—unless doing so will increase their profit margins. How else to explain their hypocritical posturing over Terri Schiavo while ignoring the 18,000 people within the United States who now die every year for lack of essential health care. (Joe Conason, New York Observer, March 23)

What is needed is a truly caring society that respects the rights of the disabled—and of everyone—to choose either dignified life or dignified death. What is needed is a society that puts people’s needs and lives ahead of profits and religious obscurantism and that builds the kind of solidarity among all people that, with the help of science, can lessen suffering.

Clancy is a disabled-rights activist.