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A fate unclear, a legacy assured

The battle over Terri Schiavo ensures hers will be remembered among the most significant end-of-life cases.

By CHRIS TISCH
Published February 27, 2005


CLEARWATER - Fifteen years ago, the feeding tube that kept Nancy Cruzan alive was removed from her stomach.

Cruzan, who lay in a persistent vegetative state after suffering severe brain damage in an auto crash, died 12 days later. Her family was by her side while protesters and a crush of media waited outside the hospital.

The three-year court battle waged by Cruzan's family against the state of Missouri to remove her feeding tube established landmark law for people teetering at death's door, especially those unable to communicate their wishes. Partially because of Cruzan, those kinds of decisions are now usually left to family members.

To this day, Nancy Cruzan's is the only end-of-life case the U.S. Supreme Court has considered.

More than 1.5-million American families decide every year to withhold or withdraw medical treatment that could keep a loved one alive for days, months or years. While the Cruzan case helped establish a legal standard about end-of-life decisions, the case of Terri Schiavo has challenged that existing consensus.

The case has dragged on for seven years, more than twice the time it took to resolve the Cruzan case. It has featured intense political pressure, relentless media scrutiny, creative lawyering, religious fervor and a family torn over a wife and daughter's wishes.

For these reasons, experts say, it's likely the Schiavo case will be remembered in much the same way as those involving Cruzan and Karen Ann Quinlan, whose removal from a respirator in 1976 also is considered a landmark court decision.

"It certainly is an important case in that it has commanded an inordinate amount of attention," said Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania. "They are fighting the consensus that has been entrenched for at least a decade."

Pinellas-Pasco Circuit Judge George Greer has ordered Schiavo's feeding tube to be removed March 18. Schiavo's tube has been taken out twice before, only to be reinserted by court order both times. If a court decides the tube should remain, modern end-of-life law could be turned on its head.

"I do believe the Schiavo case will end up being precedent-setting," said David Gibbs III, the attorney for Schiavo's parents. "It is shocking how many people in conditions like Terri are finding the end of their fate."

* * *

The most significant difference between the Cruzan and Schiavo cases are the women's families. The parents and siblings of Cruzan, who was not married, supported removing her feeding tube. Schiavo's family is split. Her husband wants the tube removed, while her parents and siblings want it to remain.

Cases of families at odds about end-of-life treatment are rare. When there is strife, it mostly hinges on family members struggling with an early prognosis that becomes more clear in a matter of days, said Steven Miles, a professor for the Center for Bioethics at the University of Minnesota's department of medicine.

He said 80 percent of all family disputes over end-of-life decisions are resolved within three days. Except for rare cases, a judge doesn't get involved.

Over the past 30 years, Miles said, no more than 5,000 end-of-life cases have ended up in court. No more than 60 have gone on to an appeals court in that time. Cruzan's was the only one to go the United States Supreme Court.

"There are families everywhere in your state facing questions like this right now and the law doesn't have any great magic to help them solve it," said Bill Colby, a lawyer who represented the Cruzans and later wrote a book about the case. "In nearly all, the social compact is working. Most decisions are managed long before you get to the court system."

If there is a dispute, one side usually relents, Caplan said. Except in the Schiavo case.

"These are the most stubborn people I've seen in the battle over end-of-life care," he said. "Most people don't have the stomach for this."

* * *

In her hospital bed, Nancy Cruzan was unable to swallow, though her eyes were open and she could blink. She would sleep and moan or sigh.

Doctors told the Cruzans their daughter was in a persistent vegetative state. Brain scans showed her dead brain cells were being replaced by liquid. Doctors said she could live in that condition 30 years or more.

Four years later, the Cruzans decided the feeding tube should be removed, but had to fight the state to make it happen.

The first judge to hear the case sided with the Cruzans. But the Missouri attorney general appealed. The state Supreme Court reversed the ruling, 4-3, and said the state's duty to protect its citizens outweighed a person's right to refuse treatment.

The Cruzans took the case to the U.S. Supreme Court. By this time, it had attracted the attention of advocates for the elderly and disabled, who feared they could be killed more quickly if they lost the ability to communicate. Opponents of abortion and euthanasia also rallied to save Cruzan. The justices ruled 5-4 that the Cruzans did not have an automatic right to insist that hospital workers stop feeding Nancy. But the court also said the Cruzans could get the tube removed if they proved by "clear and convincing evidence" that she would want to die.

Though the ruling didn't allow the immediate removal of Nancy Cruzan's feeding tube, it affirmed that an incapacitated person whose wishes are clearly known can have their treatment ended.

Prompted by the case's publicity, two of Nancy Cruzan's colleagues from a school for deaf and blind children said that in talking about disabled children, Cruzan had said she would not want to be kept alive by machines.

Cruzan's doctor, who previously had wanted to continue her feeding, also changed his mind. And a court-appointed guardian for her sided with the Cruzans. Opinion polls indicated most people supported the parents' wishes. The attorney general dropped the state's opposition.

Armed with the new evidence and buoyed by the U.S. Supreme Court decision, the Cruzans again asked a judge to order the tube removed, and he agreed. Cruzan's legacy was set.

"Because of Nancy, I suspect hundreds of thousands of people can rest free, knowing that when death beckons, they can meet it face to face with dignity, free from fear of unwanted medical treatment," Joe Cruzan said that day. "I think this is quite an accomplishment for a 25-year-old kid, and I'm damned proud of her."

The decision ensured that even people who didn't have living wills could be removed from feeding tubes if friends or loved ones could testify about statements they made. Ultimately it would be up to the person's family, not the government.

The Cruzan case established that feeding tubes were akin to other treatments like ventilators, which overrode the emotion people often associated with starving a patient. It also established that there was no difference between withholding treatment and removing it.

Nancy's parents considered the decision a victory, even as they mourned her death. Right-to-life protesters called the Cruzans murderers. They stormed the hospital in an effort to reinsert the tube. Nineteen people were arrested.

Nancy Cruzan died of dehydration on Dec. 26, 1990.

The case took a terrible toll on the Cruzans. Six years later, Joe Cruzan hanged himself from his carport. Joyce Cruzan was diagnosed with cancer in 1998. She refused chemotherapy and died a few months later.

Nancy Cruzan's grave marker reads like this:

Born: July 20, 1957.

Departed: January 11, 1983.

At Peace: December 26, 1990.

* * *

The first time Terri Schiavo's name appeared in the St. Petersburg Times, the headline stated: "Beach Party to aid comatose woman."

The Nov. 8, 1990, article came eight months after Terri collapsed in her home from a potassium deficiency. It chronicled how Terri's husband, Michael, and her parents, Bob and Mary Schindler, were raising money to pay for experimental treatments.

But in 1993, a rift formed between Michael and his in-laws over Terri's treatment. Stories vary as to the details, but Michael began efforts to have Terri's feeding tube removed in 1998. Because spouses are generally given the right to decide for their husband or wife, Michael was appointed guardian.

Though Terri Schiavo could move her eyes and make sounds, doctors said the movements were simply reflex. The Schindlers said their daughter was responding. Michael Schiavo said he could detect nothing.

He and other members of his family said they had heard Terri Schiavo say she wouldn't want to be kept alive by a machine. The Schindlers said they had never heard their daughter make such a remark.

After a trial in 2000, Judge Greer found there was clear and convincing evidence that Terri Schiavo wouldn't want to be kept alive artificially. He ordered the tube removed.

The Schindlers began their appeals and new motions that so far have extended the case five years. George Felos, Michael Schiavo's attorney, has called many of the legal actions "frivolous motions" that subvert Terri's wishes.

Through it all the media's interest in Schiavo's plight has not waned. Video images of Terri Schiavo, which show her eyes and mouth moving, have been compelling news nationwide.

"I think it shocked the conscience of a nation," Gibbs said.

Michael Schiavo, who has generally avoided the press, has at times been cast as a money-hungry villain only after the money his wife received in a settlement and who has a new life with a girlfriend.

The idea of a potentially malevolent family member is a new twist in the end-of-life argument, said Laurie Zoloth, a professor of Medical Ethics and Humanities at Northwestern University's Feinberg School of Medicine.

"There's something about the extraordinary tragedy of those relationships that is captivating," Zoloth said. "A plausible argument can be made for every single position in this case. And that's why it's hard."

The publicity surrounding the Schiavo case has attracted many of the same groups that protested outside Nancy Cruzan's hospital room in 1990.

"And then it cycles from there," Caplan said. "There are politics at every step when you have national visibility."

The politicization of the case may have reached its apex when the state Legislature passed "Terri's Law," which let Gov. Jeb Bush order doctors to reinsert Schiavo's feeding tube after it was removed. No one was surprised when the state Supreme Court ruled the law unconstitutional.

Zoloth said the Schiavo case also is unfolding in a nation whose values may have shifted since Quinlan and Cruzan. That includes definitions of family and, especially of late, the place of religion in public life. Many of the protesters rallying to save Schiavo see removing the tube as wrongly usurping a duty that belongs solely to God.

And last year Pope John Paul II said health care providers are morally obligated to provide food and water to patients in persistent vegetative states. He did not specifically mention Schiavo, but Caplan says it seems obvious he was referring to her. On Thursday, a Vatican cardinal spoke out specifically against removing Schiavo's feeding tube. Some attribute the case's longevity to creative lawyering on the part of the Schindlers' attorneys, who have consistently filed new motions and appeals to delay the tube removal. The most recent motion cites a study that found brain activity in brain-damaged patients, even though those patients have less severe brain damage than Terri Schiavo.

Gibbs said the case is much like a death penalty defense, where lawyers will use any method possible to keep their client alive - often delaying execution for more than a decade.

"You will see some aggressive advocacy in those cases because it's a life and death issue," Gibbs said.

But in his most recent order to remove the tube, Greer noted he will not entertain the Schindlers' motions forever.

So, most bioethicists and attorneys say the end is near for Terri Schiavo.

And despite the fight by the Schindlers, some say the consensus created by Cruzan will endure.

"I think it ratifies the wisdom of the existing course that was established in Cruzan and Quinlan," Miles said. "This (Schiavo) is an anomaly. The law usually works. The Supreme Court has declined to set aside the Cruzan framework."

If anything bridges that gap between Cruzan and Schiavo, it is the message both cases have delivered about the importance of telling loved ones about one's wishes and creating a living will.

"This should be an absolute call for everyone to have the serious discussion of what they would want for themselves if they were in this situation," Zoloth said. "If this case led to clarity and serious discussions and confrontations in mortality and finality across the state, that would be an extraordinary legacy. Because few families have the ability to touch that many lives as this family has to touch."

[Last modified February 27, 2005, 00:14:06]


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