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Series Day 3: Seeing Signs Of Life

Woman is aware, her family says
Last in a series.

By Hugo Kugiya
Staff Writer

April 15, 2003

St. Petersburg, Fla. -- To prove to the doctor Terri Schiavo is a person, her parents brushed her hair, dressed her in a red smock and seated her in a special wheelchair that accommodated her rigid, supine body. They wedged pillows at her elbows to keep her from reflexively drawing her arms toward her body, and they placed wads of gauze in her clenched hands to keep her palms dry.

Adjusting the pillow behind Terri's head, Mary Schindler leaned over her quadriplegic daughter, then 38, and gently nibbled her cheek. She spoke to her in a high voice, the way she did to all her babies. "Hi. How do you feel? How are you, baby? How's my girl? How's my girl? Is that better? Do you feel better? Is that OK?"

On Sept. 3, 2002, Mary and Bob Schindler, Terri's father, readied their daughter for Dr. William Hammesfahr, a Clearwater neurologist who would spend three hours tugging at Terri's limbs, reading her expressions and movements, searching for evidence of the awareness the Schindlers, their other children and friends swear is still very much inside Terri's body.

The doctor began the examination by playing a recording of an up-tempo, jaunty version of "The Christmas Song," one of Terri's favorites from years earlier.

As the song started, she looked faintly confused and uncomfortable. By the end of the first verse, her expression suddenly changed into what looked like surprised recognition. She made a noise that sounded like laughter, and she seemed to smile. She tossed her head back. She listened to the rest of the song, her expression more relaxed.

These and other reactions she would have later are not those of a vegetative person, her parents said. Dr. Hammesfahr concluded the same.

In Florida, the statutory definition of a vegetative state is "a permanent and irreversible state of unconsciousness in which there is an absence of voluntary or cognitive behavior and an inability to interact purposefully with one's environment."

Several doctors who have also examined Terri have testified that she is in a permanent vegetative state and has been ever since her heart stopped 13 years ago, depriving her brain of oxygen for at least 10 minutes.

The Schindlers have grown accustomed to Terri's moans and grunts, interpreting each one and reading the flickering and widening of her eyes. They believe she is trying to communicate.

"You can tell she's trying so hard to talk," Bob Schindler said. "She's just trying so hard."

The Florida 2nd District Court of Appeals heard oral arguments April 4 from lawyers representing the Schindlers and Terri's husband, Michael Schiavo, who has tried for five years to stop the artificial feeding that keeps Terri alive. Perhaps as early as this week, three appellate court judges will decide whether to let stand a lower-court ruling allowing Michael Schiavo to remove the feeding tube.

Dr. Hammesfahr and Dr. William Maxfield, a specialist in radiology and nuclear medicine from Tampa, examined Terri in September. Both doctors, recruited by the Schindlers, testified they do not believe Terri is in a persistent vegetative state. They also testified she could be helped by various experimental therapies, including sessions in a hyperbaric chamber, oxygenating her blood under high pressure and giving her drugs that would increase blood flow to her brain.

Dr. Maxfield testified that he thought Terri once tried to sing along to the music being played, that she recognized her mother, that she focused on moving objects and reacted to lights.

Doctors solicited by Michael's lawyer rejected the other doctors' findings. They categorized Terri's reactions as reflexive but were unable to explain all of them. Some admitted there are some things beyond any doctor's ken. There are no tests to confirm a person's "inner awareness," said Dr. Peter Bambakidis, a neurologist from Cleveland.

The Schindlers have challenged Michael Schiavo's contention that Terri would not have wanted to live on a feeding tube. They have also challenged his fitness as her guardian, going so far as to accuse him of physically abusing her when they lived together. They want custody of Terri so they can control her treatment.

"After what she's been through for 13 years, she has to want to live," Mary said.

The matter of Terri Schiavo's life went on trial Jan. 24, 2000, not before a jury but before state probate court Judge George Greer. Although it was a matter of life and death, the case was legally an issue of custody and therefore a probate case. Greer ordered feeding stopped. The ruling was one of the most liberal interpretations of existing laws.

At that trial, Michael testified he and his wife talked about life support when Terri's grandmother was ill. "She said, 'If I ever have to be a burden to anybody, I don't want to live like that,'" he said.

He also testified the two watched a television documentary about people on life support. "She made the comment to me that she would never want to be like that," he said at the trial. Michael said he told Terri he felt the same way and has since written into his will instructions not to be kept on life support.

Michael's older brother, Scott Schiavo, and Michael's sister-in-law, Joan Schiavo, who is married to a different brother, also testified Terri made similar comments to them. Scott said he talked with Terri at a luncheon after a funeral for Scott's grandmother, who had spent weeks unconscious on a ventilator.

"Terri made mention at that conversation," Scott said, "that 'If I ever go like that, just let me go. Don't leave me there. I don't want to be kept alive on a machine.' Pretty much everybody at that table that was in the discussion had made the same comment."

Those comments are reflected in surveys that show most people say they would prefer death to a life on machines.

Advocates for the rights of disabled people are particularly troubled by the implications of such surveys, which they see as society making presumptions about the quality of a disabled person's life. Rus Cooper-Dowda, a disabled writer familiar with the Schiavo case, said people might give different answers if they actually were incapacitated.

"When somebody says 'I'd rather be dead,' it's disabled-life bias," she said. "... What they're expressing is a fear of change, not a wish to die. If you insist on a really great death or a full recovery, you're discounting the experience of a huge number of Americans living with a disability."

Patients have the right to refuse such treatment, the U.S. Supreme Court ruled in 1990. But when a patient is unable to speak or does not leave written instructions, state courts require evidence of a patient's wishes. Standards of proof differ from state to state, but have become more liberal over the years.

To counter the claims of Schiavo and his family, Terri's parents and siblings testified they never heard Terri express a wish to die rather than live on life support.

One of Terri's childhood friends, Diane Meyer, testified that Terri once uncharacteristically lost her temper when Meyer told a joke about Karen Quinlan. "What is the state vegetable of New Jersey?" Meyer asked Terri in the summer of 1982. The punch line was "Karen Ann Quinlan."

"She said the joke wasn't funny and did not approve of what was going on in the Quinlan case," Meyer testified, referring to the legal battle to remove the woman from life support. "I remember one of the things she said is, 'How did they know she would want this?'"

To undermine Michael's credibility, Terri's close friend Jackie Rhodes testified that Terri often spoke about divorcing Michael and described him as mentally abusive.

Terri's sister Suzanne and brother Bobby also said their sister wanted to divorce Michael, and that she spoke of it only days before she collapsed. Bobby said Terri wept as she told him, "Bobby, I am miserable, I am so unhappy. I want to get a divorce."

In June 1998, soon after Michael asked the court for permission to remove Terri's feeding tube, the court appointed Richard Pearse as Terri's guardian ad litem. His job was to investigate the facts of Terri's case and represent her interests in court.

At the 2000 trial, Pearse concluded that he had not found clear and convincing evidence that Terri would have rejected life support.

Pearse said he was troubled by the fact that Michael waited until 1998 to petition to remove the feeding tube, even though he claims to have known her wishes all along, and that he waited until he won a malpractice suit based on a professed desire to take care of her into old age. As her husband, Michael would inherit what is left of her malpractice award, originally $700,000, which is held in a trust fund administered by the court. Accounting of the fund is sealed. But Michael's lawyer, George Felos, said most of it has been spent on legal fees associated with the custody dispute.

Pearse also said he did not find Joan and Scott Schiavo's testimony credible.

Greer ruled in Michael's favor. Appeals by the Schindlers failed. A state appeals court upheld Greer's decision; the Florida and U.S. supreme courts declined to hear the case. And on April 24, 2001, hospice staff stopped feeding her. But two days later Pinellas County civil court Judge Frank Quesada ordered that feeding be resumed when evidence suddenly surfaced suggesting that Michael never really knew what Terri's wishes were.

The Schindlers had contacted a woman Michael dated in 1991 who told them Michael had confessed to her he did not know what Terri would want. Although the woman refused to sign an affidavit, it bought the Schindlers some time. And with it, they found Trudy Capone.

A former co-worker of Michael's, Capone signed an affidavit on May 9, 2001, stating "Michael confided in me all the time about Terri ... He said to me many times that he had no idea what her wishes were."

The case has since bounced back and forth between the appellate court and Greer's probate court with no change in his original order. In their most serious accusation, the Schindlers submitted an affidavit last November by a nurse, Eleanor Dreschsel, who had recently discovered records of a total-body bone scan done on Terri one year after her collapse. The report showed ossification, or natural healing, of several fractures in her spine, femur, ribs and ankles, the possible result, she wrote, of "possible trauma."

The Schindlers now allege that the bone scan shows that Schiavo might have physically abused Terri before she collapsed and could have played a role in her condition. The Schindlers, who have long wanted Michael to divorce Terri, said they will pursue the allegations in civil court because the statute of limitations on such a crime has expired.

"I have no empathy towards them [the Schindlers] anymore," said Michael Schiavo, "not after what they put me through, not after the lies, the accusations. ... Why should I divorce her? Why is that an answer? I married Terri and I'm going to carry out her wishes."

The Schindlers said Michael has, in effect, ensured Terri's death by taking away their ability to make medical decisions for their daughter.

"I walked in her room last week," said Terri's sister Suzanne Carr, "and she went nuts. She cries half the time she sees us. You just can't discount all this behavior. If you let her go, you'd have to let all the disabled and elderly go, too. ... I know she could never be the same, but she could be helped. She could be better. She could be amongst the living again."

Copyright © 2004, Newsday, Inc.