Their child and his wife - but whose life? Tragedy tears a family apart during an 11-year struggle

Posted: April 29, 2001

Bob and Mary Schindler had their guts turned inside out last week.

On Tuesday, they began bracing for the death of their daughter, Terri Schindler-Schiavo, after a court ordered the feeding tube keeping her alive disconnected.

On Thursday, they were lifted by another order, which resumed the feedings that could extend the woman's life indefinitely.

By yesterday, some uncertainty clouded their hopes.

"It's been a sleigh ride, no doubt about it," Bob Schindler, a native of Philadelphia who lived with his family in Montgomery County before moving to the Tampa Bay area 15 years ago, said yesterday. "You're confronted with your daughter's dying and there's nothing you can do about it. Then the feeding began and we were elated."

The Schindlers have pinned their latest hopes partly on a woman who called a radio talk show last week in Florida and seemingly cast doubts on comments made earlier by Schindler-Schiavo's husband, Michael Schiavo. But the woman, who had dated Schiavo in 1992, later said she might not be as helpful to the Schindlers as they hope.

It may be a blessing that 37-year-old Schindler-Schiavo - who doctors say has spent the last 11 years, two months and four days not knowing who or where she is - is unaware of the controversy around her, fueled by a deep bitterness between her parents and her husband. Since a heart attack in 1990 cut off oxygen to her brain for as long as six minutes, she has been in a persistent vegetative state.

Her husband says it is time for her to die; he insists she told him, in spontaneous moments during the early years of their marriage - after seeing a television program about life support or hearing of an incident in which a person was declared brain-dead - that she never wanted to be kept alive by heroic means.

Her parents desperately want her to live, and they accuse Michael Schiavo of being interested only in a $700,000 trust fund from a 1992 malpractice suit that he would inherit upon Schindler-Schiavo's death.

On Monday, the Schindlers seemed to finally hit a dead end when the U.S. Supreme Court declined to hear their case, letting stand a lower court ruling that sustenance could be discontinued. Schindler-Schiavo was fed liquid nutrients through a tube for what was thought to be the last time at 8 a.m. Tuesday.

Later that day, Schiavo inexplicably broke a public silence of more than a year and called a radio talk show. Cindy Shook Brashers, who was a girlfriend of Schiavo's for six months in 1992, allegedly heard it and called that station or another station to dispute Schiavo's contention that he and his wife had ever shared thoughts about living on life support.

The Schindlers tracked down Brashers, hired a private investigator to interview her, and on Thursday filed suit against Schiavo. They say Brashers' statement shows that Schiavo perjured himself last year when he testified that his wife had, on occasion, expressed a desire not to be kept on life support or be a burden to others.

It was that testimony, the Schindlers added, that influenced the judge's decision to order the feeding tube disconnected.

A new circuit court judge said he couldn't substantiate the claim but didn't want to take any chances until the matter could get a full airing; he ordered the feeding resumed.

"I think God intervened," Bob Schindler said yesterday. "I think He sat back for a while and allowed people to make decisions, but with everything that's going on, I think He said, 'OK, it's time for Me to get involved.' "

However, late Thursday, Brashers told a Florida newspaper that her words had been taken out of context; she didn't think anything she said could help the Schindlers.

Schindler and one of his lawyers, Pat Anderson, both say Brashers backtracked because she's afraid of Schiavo.

"You never really know what a witness is going to say until the witness gets under oath," Anderson said. "Sometimes there are good surprises, sometimes not-so-good surprises."

Schiavo's lawyer, George Felos, called the suit the Schindlers filed Thursday inappropriate, although by the weekend he hadn't decided what his next legal step would be.

"The order permitting the discontinuance of life support has . . . become the decision of the appellate courts," he said, "and a circuit judge has no authority that, in essence, overturns the judgment of the appellate court."

He added that Schiavo was devastated by the news.

"Imagine if you were in a death vigil with your wife and reaching toward that conclusion and then it's reinstituted," Felos said. "The heartbreak and heartache and torment - I can't even imagine how horrible that would be."

The Schindlers say they can imagine quite easily.

The Schindlers and Schiavo, who in better times lived together in Pennsylvania and Florida, have turned an emotional private matter into a glaring public right-to-die issue through an eruption of accusations, centered largely on the trust fund.

The case has drawn national headlines and has ensnared the Diocese of St. Petersburg, which Bob Schindler accused of turning its back on his cause to keep his daughter alive. It has reached the Florida Legislature, in which a lawmaker, with harsh words, last week amended a guardianship bill to include a provision that would require approval from parents before a spouse could end life-sustaining procedures.

"I would never do that to my wife - starve her to death," said Larry Crow, a Republican who introduced the measure.

It also has posed this question: At what point do you decide that a loved one will not recover from brain damage?

In this instance, as in similar cases, it was thrust into the court's hands when Schiavo sought a petition in 1998 to have the feeding tube removed. The judge agreed and was upheld by an appellate court, which wrote:

"Unless an act of God, a true miracle, were to recreate her brain, Theresa will always remain in an unconscious, reflexive state, totally dependent upon others to feed her and care for her most private needs."

The Schindlers, though, insist their daughter is responsive - laughing, crying, moaning.

"When we visit, when we walk in, she'll show no signs of any emotion," Bob Schindler said. "Then my wife will say, 'Terri, it's Mommy,' and the next thing you know, you'll see this big grin on her face, and then she'll start to laugh. Sometimes that turns into crying and sometimes sobbing. That tears my guts out, because it's almost like a plea, 'Help me, Mommy, help me.' "

Schindler says he has received calls and letters of support from others who watched relatives recover from the kind of brain damage suffered by Schindler-Schiavo.

But reactions such as hers are merely reflexive and not uncommon in a person in a persistent vegetative state, said John Hansen-Flaschen, chief of the pulmonary, allergy and critical-care division at the Hospital of the University of Pennsylvania, who spoke in general terms, not specifically about Schindler-Schiavo's situation.

"A family can come in to visit, and the noise they're making can cause blinking or the eyes to move in their direction, and they want to hope and believe that the person they love who is lying there is responding," said Hansen-Flaschen, who has a special interest in the care of patients at the end of life.

Schindler-Schiavo is not comatose. Like the 10,000 other patients across the country who remain in such a state, there is some activity around the brain stem. She has sleep and wake cycles, her eyes move toward sound, and tears form. However, the cortex, the brain's outer layer that controls cognitive thinking, is gone.

Hansen-Flaschen said that unless a person can make specific movements in response to commands, doctors conclude that there is no awareness.

*

Theresa Marie Schindler was born on Dec. 3, 1963. A month short of her 21st birthday she married Schiavo, whom she had met at Bucks County Community College. The couple went to Florida in 1986, not long after her parents moved to the Tampa Bay area.

On Feb. 25, 1990, Schindler-Schiavo, then 26, had a heart attack that doctors later said was brought on by a potassium imbalance. Her parents suspect their daughter, always conscious of her weight, had an eating disorder, possibly bulimia, that might have contributed to the attack.

She was hospitalized until that August, when she was returned to the house her parents and husband shared. In November she was taken to California for experimental treatment. She lived in nursing homes for years; for the last 12 months she has been in a hospice in Pinellas Park, near St. Petersburg.

Arguments over his wife's care led Schiavo to leave his in-laws' house in May 1992, a few months before his malpractice case went to trial. The suit resulted in a settlement of more than $1 million in January 1993. Schiavo received $300,000, and about $750,000 was set aside for Terri's care. The money would become part of his wife's estate in the event of her death and would go to Schiavo as her heir. The couple had no children.

In February 1993, Schiavo and his in-laws had a major falling out as the Schindlers tried to have him removed as their daughter's guardian.

In May 1998, he filed the petition to remove the feeding tube. The Schindlers fought it but lost at every level: trial court, the U.S. Court of Appeals for the Second Circuit, the Florida and U.S. Supreme Courts. At each step, the Schindlers maintained that Schiavo was interested only in the settlement money.

Schiavo says that is not his motivation. Lawyers for both sides say the Schindlers offered to raise $700,000 to give to Schiavo if he would stop his effort to let his wife die. He refused.

"This is not about money but about carrying out his wife's wishes," his lawyer, Felos, said. "The wife said on more than one occasion that she didn't want to be kept alive artificially."

Schiavo has also declined to seek a divorce.

"Why doesn't Michael walk away?" asked Felos. "He'd be leaving her care to her parents, who would keep her alive for decades with unwanted medical treatment. . . . It would have been a lot easier for him to walk away than to put up with this. But he thinks his wife's wishes should be carried out."

The Schindlers believe Schiavo wants the money - and his wife dead - so he can marry his current girlfriend.

Anderson, the Schindlers' lawyer, also complains that Schiavo has gotten court approval to use money from the trust fund to pay his legal bills.

"We don't think it's right that her own money, awarded by a jury for her future medical care, is being used to try to kill her," she said.

The Schindlers have acknowledged an offer from Schiavo to give the money to charity if they back off. But, based on their stormy relationship and what they contend has been duplicitous behavior, they did not believe the offer was sincere.

The District Court, in its opinion, noted that the Schindlers and Schiavo seemed incapable of agreeing on anything. But, it said, "If anything is undeniable in this case, it is that Theresa would never wish for this money to drive a wedge between the people she loves."

If so, it is a wish that has gone unfulfilled.

Ralph Vigoda's e-mail address is rvigoda@phillynews.com.

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