Live or Die? Debating a Woman’s Future

Terri Schiavo

First in a series: A Life Or Death Issue; Florida woman’s fate contested

Newsday

Sunday, April 13, 2003

By Hugo Kugiya, Staff Correspondent


ST. PETERSBURG, FLA. — The last day that Terri Schiavo was able to move and talk, she kept an appointment with her hairdresser.

Well, are we a blonde or a brunette?” her friend and co-​​worker Jackie Rhodes asked on the phone after the appointment on Saturday, Feb. 24, 1990.

The topic of conversation immediately moved to a more relevant consequence of the trip to the salon. Her husband, Michael Schiavo, found the $80 cost extravagant. She and Michael argued, Terri told Jackie, who offered to come over and comfort her.

No,” said Terri, who had been crying. “I’m going to Bobby’s.”

Bobby Schindler was her younger brother, who lived in the same apartment complex near Tampa Bay. She was supposed to go out dancing that night with Bobby and another friend. But the argument had dampened her mood and sapped her energy for carousing.

For the money she spent and the trouble it invited, her hair looked about the same. A natural brunette, Terri had decided to keep it blonde.

I’m tired,” she told Bobby. “I’m going to stay and wait for Michael so we can talk.”

The couple, then both 26, never had that conversation. Terri was asleep when Michael came home from work and joined her in bed.

Sometime early Feb. 25, 1990, Terri’s heart inexplicably stopped. She stopped breathing. Michael found her on the floor outside their bedroom. He called 911, then called Bobby. The sun came up as she was taken to the hospital. She was eventually revived, but left a quadriplegic and severely brain damaged. A preponderance of doctors have diagnosed her as being in a permanent vegetative state, conscious but incapable of complex brain function. She can breathe but is fed through a tube inserted into her stomach.

Terri Schiavo is the subject of Schindler vs. Schiavo, a custody case pitting her parents against her husband, now before three judges of the Florida Second District Court of Appeal. The panel heard oral arguments April 4 and is expected to rule perhaps as early as this week whether Terri will live or die.

You’d expect these kinds of court cases to be stopping,” said Dr. Arthur Caplan, chairman of the Department of Medical Ethics at the University of Pennsylvania, “but we’re still not sure what to do when a patient isn’t terminally ill, when there is a family dispute, when the person’s young and somewhat conscious.”

Because the state and the U.S. supreme courts have declined to hear the case, the appellate court is likely the last resort for both parties, who have fought over control of Terri’s medical treatment for about 10 years.

If the appellate court upholds a lower court ruling to end artificial feeding, it would be one of the most liberal interpretations to date of right-​​to-​​die laws. Courts have rarely halted life-​​sustaining treatment over the objections of almost all of the patient’s immediate family. And there is rarely disagreement among family members about the patient’s condition, as there is in the Schiavo case.

In the last 20 years, laws regarding the termination of life-​​supporting treatment have become much more relaxed, favoring patients and families over doctors and agencies.

Today, Terri Schiavo is the longest-​​surviving patient at Woodside hospice in Pinellas Park. She is almost completely confined to her room; Michael, her legal guardian, has stopped her parents from taking her on outings, an outgrowth of the custody dispute. Her visitors are limited to her immediate family.

Her body is rigid and locks up in awkward positions. She keeps her arms drawn tightly up to her neck, her fingers curled tightly into her palms, into gnarled fists. She has not uttered a comprehensible word in more than 13 years. Years of inactivity and her liquid diet have made Terri plump, her features soft and less distinct. Her legs are stick thin. In the final irony of her life, spent mostly overweight and trying to lose pounds, she might soon die by starvation.

She is fed at night. During the day, nurses roll her over to prevent bedsores. Attendants change her sheets. Like a baby, she wears a diaper and must be changed and cleaned. Nurses give her painkillers during menstruation because they seem to stop her moaning, even though doctors do not think she is capable of feeling pain. It is mostly for the benefit of the nurses who are distressed by Terri’s moaning. Some nurses who have taken care of her say they grew fond of Terri and think of her as a friend.

Terri’s was a workaday life. She did not harbor heady dreams, although she once hoped to be a veterinarian and wrote to TV zookeeper Joan Embry for advice. Embry’s reply was to finish college. But Terri was never more than an average student and dropped out of junior college. She was not without formidable resolve, evidenced by a dramatic weight loss. Since high school, she had lost almost 100 pounds.

Terri and Jackie were clerks at the local office for Prudential Insurance, minding the public counter where people usually came in to change beneficiaries or pay premiums. It was not a job to be mastered, just performed dutifully, which she did.

Terri’s transformation from an obese child and teenager into a slim, confident young woman could have easily remained the greatest story of her life. But the events of the coming night and the years that followed would take her story in another direction, as the subject of a high-​​profile court case.

In 1998 Michael Schiavo successfully petitioned a probate court for permission to remove the feeding tube, claiming his wife would have wanted to end her life. Her parents, Bob and Mary Schindler, challenged his decision, contending their daughter would want to live. They believe that with aggressive treatment her condition can improve. Schiavo wants to allow her the dignity of death.

We used to take her to the mall,” Mary Schindler said. “We’d take her out to get her hair done. We took her to Sunday Mass, to parties on St. Patrick’s Day and on the Fourth of July. People loved talking to her.”

It has been years since the Schindlers have been allowed to take Terri out or bring her to their home, where she would sit in a special wheelchair designed for her condition. “We opened presents together on Christmas,” her mother said. “We got her presents. We all made a big fuss over her. We had Thanksgiving dinner together. Terri was sitting around with all of us, one big family. I just want her back like that.”

Surveys indicate a majority of Americans support a basic “right to die,” a relatively new concept that has been slow to keep up with the drugs, therapies, surgeries and machines that in some cases can keep people alive indefinitely.

While Schiavo’s case will not rewrite the laws, it will likely have an impact on how they are applied.

To understand how it is that the opinions of two appellate court judges are all that stand between her and death, a few details of her personal life must also be understood.

The condition of her marriage has become a point of great dispute, viewed by some as simple and loving but by others as indifferent at best, headed for a divorce. To some, she spoke disparagingly of her husband, whom she married Nov. 10, 1984. To some she said nothing and all seemed fine. What matters, in terms of her custody, is that she stayed married to him.

In granting a spouse the power of acting as surrogate for critical medical decisions, a court presumes the relationship is loving and caring. Michael Schiavo has professed to such feelings in court.

To me, she was everything,” Michael testified in January 2000. “I was deeply in love with my wife and I still am.”

The Schindlers say they have at least as much claim to Terri’s trust and confidence and are at least as likely as Michael to know what their daughter would have wanted. Both of Terri’s siblings also said their sister would want to live.

The Schindlers are a particularly close family. When Bob and Mary decided to leave Philadelphia in 1986 and move to Florida, their grown children followed. Before moving to Florida, Terri was also close to her in-​​laws, Michael’s older brothers and their wives and girlfriends. They were part of the charm of dating Michael. These two families were a ready-​​made social club, always celebrating a holiday or birthday.

The relative weight of all these relationships, the secrets they shared and the trust implied, and to whom she was closest would become a part of the trial court’s calculations in deciding Terri Schiavo’s fate.

Pinellas County probate judge George Greer — the trial was a bench trial — also considered comments she made while watching a movie with her sister-​​in-​​law about a man in a coma hooked up to life-​​support machines. During the movie, her sister-​​in-​​law Joan Schiavo said in court, Terri “stated that if that ever happened to one of us, in our lifetime, we would not want to go through that. That we would want it stated in our will we would want the tubes and everything taken out.”

They watched the movie sometime before 1986, about 15 years before Joan testified. She did not remember the name of the movie, or know the type of machines it showed.

The judge found Joan’s testimony credible. It, along with similar testimony from Michael Schiavo, and Scott Schiavo, Michael’s older brother, was sufficient proof of her wishes not to be kept alive artificially, the judge ruled.

Applying Schiavo’s right to die has been mostly a matter of interpretation, as it has been in many other cases. The only federal standard for such cases was created in 1990, four months after Terri collapsed, when the U.S. Supreme Court found that patients have a constitutional right to refuse unwanted medical treatment, but left it up to individual states to regulate that right.

As a result, standards differ from state to state and depend on political climate and case history. Minnesota and Florida, for example, are fairly liberal. New York is considered one of the strictest. In New York, oral testimony to a patient’s wishes would never fly in court. Most other states will consider oral testimony but require a substantial amount.

In any state, the law works best when the patient is aware and lucid and can express his or her wishes. It also tends to work well when the patient, if incapacitated, has left specific, written instructions. But young, healthy people rarely consider such matters.

When there is no legal document and the patient is incapacitated, it is up to the family to decide on medical treatment. Terri presents a worst-​​case scenario in which there is no document and family members passionately disagree. And because she is young and otherwise healthy, the emotional stakes are higher.

Case history has shown that state courts tend to take a conservative approach and are loath to order a patient’s death, even when everyone in the patient’s family supports the removal of life support, and even when a patient has left written instructions not to be kept alive.

The legal system does not like to say someone’s quality of life is not worth supporting,” Caplan said. “The legal system abhors making quality-​​of-​​life judgments.”

Families who have attempted to let their loved ones die have generally faced stiff opposition from religious groups, advocates for the disabled and state officials. That is why the past court cases have always involved families fighting for the right of a patient to die, not to live. For this reason, the Schiavo case is unique and illustrates how much sentiment has changed regarding the right to die since the days of Karen Ann Quinlan.

Quinlan collapsed at age 21 in 1975 after taking alcohol and tranquilizers at a party. She emerged from a coma into a permanent, vegetative state. In 1976, her father, unopposed by other family members, petitioned the New Jersey Supreme Court to allow him to direct doctors to stop using a respirator to keep his daughter alive. The court granted his request, concluding that her right to privacy gave her the right to choose her medical destiny and that her father could make that choice on her behalf. After she was taken off the respirator, Quinlan unexpectedly began breathing on her own. Her feeding tube was not removed. She lived until 1985, when she died of pneumonia.

The next landmark in right-​​to-​​die law was Nancy Cruzan. She was 17 in 1983 when she lost control of her car. Unlike Quinlan, Cruzan could breathe on her own but needed a feeding tube. Her parents convinced a Missouri court she would not want to be kept alive in her condition, basing their assumption on a conversation conveyed to them by a former roommate. State officials challenged the decision, resulting in the first time the U.S. Supreme Court agreed to hear a right-​​to-​​die case.

By a 5 – 4 vote, the Supreme Court determined in 1990 that Cruzan had a constitutionally protected right to refuse treatment but also found her parents did not present sufficient evidence of her wishes.

When more of Cruzan’s friends testified that she had told them she would not want to be kept alive in her condition, the Missouri court allowed the feeding tube to be removed. She died 12 days later.

In between Quinlan and Schiavo, courts have entertained similar cases.

The 1991 case of Helga Wanglie, 87, was unique in that the Minnesota hospital caring for her petitioned a state court to allow it to remove her feeding tube over her husband’s objections. In July 1991, a county judge supported Wanglie’s husband, but she died that same week of natural causes.

In May of 1991, an Indiana judge allowed a religiously affiliated law center to intervene on behalf of Sue Ann Lawrence. Her parents had successfully petitioned a state court to stop artificial feeding. Feeding was resumed during the law center’s appeal. She died two months later, at age 42, before the appeal was heard.

In August 2001, the California Supreme Court unanimously ruled that the wife and daughter of a vegetative man lacked evidence that would allow them to stop artificial feeding. The family had only the memory of a conversation in which the man, Robert Wendland, said he wouldn’t want to live in a vegetative state. That was not enough to satisfy the court, but by the time it ruled Wendland had died of pneumonia.

Last month, Margaret Russell, 92, of Lynbrook, died six weeks after artificial feeding was stopped by her legal guardian. Russell left written instructions. Relatives disputed the guardian’s interpretation, but a judge refused to intervene.

All these cases indicate that courts have been cautious when it comes to granting families permission to let their loved ones die. If possible, courts avoid getting involved, preferring to let nature, families and doctors resolve a patient’s fate.

Obviously this [the Terri Schiavo] case has been a hot potato for the judiciary,” said George Felos, Michael Schiavo’s attorney. “No judge wants to be the last judge resulting in a patient’s death, so there’s a lot of buck-​​passing. This case is unusual in that the trial judge has consistently ruled in favor of the husband.”

On the night she collapsed, Terri Schiavo dressed herself for the last time, wearing sweatpants and a sweatshirt to bed. Sometime after midnight, Michael woke up, heard a thud and found his wife on the floor.

I’ve gone on with a portion of my life,” Michael Schiavo said, “but I’m still going to carry out the wishes that she wanted … I wanted Terri to come back. I wanted to get on with our lives. We had a future planned, we wanted a family … I had taken Terri to a multitude of doctors, and when you hear over and over again that you’ve done everything you can, it starts to click … once reality sets in, and you see that there’s nothing happening, then you start to think and you realize that Terri didn’t want to be like this.”

TOMORROW: A husband’s agony.

Live or Die? Debating A Woman’s Future.

Second in a series: A Husband’s Certainty; Florida man says wife wouldn’t want to live in vegetative state

Newsday

Monday, April 14, 2003

By Hugo Kugiya, Staff Correspondent


ST. PETERSBURG, FLA. — If he spoke to his wife one last time, Michael Schiavo does not remember. It was a Saturday night, the busiest of the week at the restaurant he managed in Clearwater, Agostino’s Ristorante. It was past midnight by the time he closed the restaurant and came home. His wife, Terri Schiavo was already asleep.

I came in the house,” he said. “Terri woke up. She heard me. I gave her a kiss goodnight. She gave me a kiss goodnight.”

Because they worked opposite schedules, the Schiavos often greeted and parted like this, with a groggy kiss in the late night or early morning.

The temperature was in the 30s, exceptionally cold for Florida, on the night of Feb. 24, 1990. Terri felt the cold easily. She was 26 and, at 5 feet 6 inches, weighed 110 pounds, the trimmest she had ever been. She once weighed 200. She did not lose the weight by exercising, but by adhering to a strict diet. She was very unathletic. Michael said, “She didn’t know what sports was.”

Michael had become concerned about her weight loss. When they married five years earlier, she weighed about 150 pounds. Now when she took off her clothes, “I could see her bones,” Michael said.

He let it cross his mind that she might have an eating disorder. Once after dinner she went into the bathroom, letting the water run the entire time. She told him she was just warming her hands. She was capable of eating large quantities of food, an entire pizza or a giant omelet. She seemed to guzzle iced tea, sometimes a gallon at a time. Her menstrual cycle had become irregular. But Michael said none of this had alarmed him.

She had been to doctors for a benign lump in her breast, a wart on her toe and dizzy spells. She had not become pregnant although she and Michael did not use birth control. But she seemed otherwise healthy. Nothing Michael or Terri knew at the time would have foretold what would happen that night.

In the early morning hours of Feb. 25, 1990, Terri Schiavo collapsed in the hallway outside her bedroom. As Michael remembered it, “I was getting out of bed for some reason and I heard this thud. So I ran out into the hall and I found Terri on the floor.” He called 911 and her brother, who lived in the same apartment complex. “I held her in my arms until her brother got there. I rocked her. I didn’t know what to do. I was hysterical.”

Since that night, Terri has not moved or spoken. Doctors believe she has no cognitive ability — that she cannot think or feel. Hers is a life of gray, something more than death but less than life. She breathes on her own but needs a gastric feeding tube to drink a slow and steady stream of nutrients similar to baby formula. She is fed all night as she sleeps, from 6 p.m. to 6 a.m.

Within weeks, the Florida Second District Court of Appeal will decide whether she will live or die. Michael, her guardian, wants to remove the feeding tube that keeps her alive because he says it’s what she would have wanted. A lower court has already given him permission to do so. Her parents, Bob and Mary Schindler, and her siblings want to keep her alive for more treatment and therapy. They do not believe she is in a permanent vegetative state or that she would want to end her life.

In such cases, relatives who want to keep the patient alive “are not thinking so much about the patient, but themselves,” said Dr. Larry Schneiderman, ethics consultant to the University of California, San Diego medical school. “They might have their own agenda, or they’re so terribly wrapped in grief. It takes an act of humanity to acknowledge that we all die and come to terms with this. Those are the heroic people, the compassionate people. The ones that won’t quit are just being unrealistic.”

Nonetheless, in the almost 30 years since a court first adjudicated a patient’s legal right to die, judges have rarely approved withdrawal of life support over the objections of a patient’s immediate family and the absence of a patient’s written instructions.

It is unlikely the state or U.S. Supreme Court will take the case should either party appeal again. So the coming decision is expected to end what has become a 10-​​year legal battle.

I think about her every day,” Michael said. “I see her once or twice a week. It’s heartbreaking. … Terri’s made the same sounds and motions for years. Back when I knew nothing about this, and I’m sitting there watching her, I was encouraged because you grasp for anything. Now, it’s like visiting a shell of a person.”

When paramedics brought Terri into the emergency room of Northside Hospital and Heart Institute in 1990, she appeared to have had a heart attack. Her brain had been deprived of oxygen for at least 10 minutes. Because she was so young, doctors initially suspected a drug overdose. Conversations with her family ruled it out. The cause of her collapse was never fully determined but was eventually linked to severe potassium depletion, which could have been caused by her diet, but could also have been caused

by efforts to resuscitate her. When she emerged from a coma weeks later, the damage done to her brain was obvious.

To the casual observer, she seemed then and now to be very much alive, if not coherent. Her eyes are open and at moments alert. She focuses and stares. She reacts to sounds and objects and people. She moans and wails. She appears to take joy in the sight of her mother.

Doctors cannot account for Terri’s every movement and reaction, but the medical orthodoxy is clear about its view: She is in a permanent and irreversible vegetative state, incapable of interpreting the world around her.

If the brain stem is intact,” Dr. Schneiderman said, “their eyes can drift, they react to sounds, their arms and hands move if you hurt them. These are spinal cord reflexes. What makes it so tragic is that loved ones are convinced they’re reacting to them.”

In the days after her collapse, at the urging of a lawyer friend of Michael’s, the Schindlers signed a document making Michael Terri’s sole legal guardian — a decision the Schindlers would later regret.

Six months after her collapse, the family moved Terri to her parents’ house, where Michael also had begun living. The family took turns caring for her around the clock. The care became too difficult, so they moved her back to a nursing home.

Doctors were not optimistic about Terri’s chances for improvement. They recommended an experimental surgery, and in December 1990, electrodes were implanted in Terri’s brain to stimulate dormant brain cells. When no improvement was noticed, the family moved her in July 1991 to the Sabal Palms nursing home in Largo, Fla., where she would live for the next three years.

There, Michael was Terri’s most constant companion. He kept her clenched hands dry so they would not become infected. To keep her muscles flexible, Michael and nurses moved her joints and put braces on her legs each day. He braced her head to keep it from falling forward. He brushed her teeth with great difficulty because she often bit down on the toothbrush. He suctioned the saliva and toothpaste from her mouth. He applied her makeup. About that time, Michael enrolled in nursing school, saying he

wanted to learn how to take care of Terri.

Her parents visited about once a month, said a nurse, Diane Gomes, who cared for Terri at Palm Gardens nursing home in Largo almost every day from 1994 to 1996. But Michael, Gomes remembered, “was there every day,” eight hours a day.

In 1992, Michael sued the doctors who cared for Terri before her collapse. He claimed she might have had an eating disorder, and that had the doctors tested her, they would have detected the potassium imbalance. One doctor settled. Another chose to go to trial. At the trial, in November 1992, Michael spoke optimistically. “I see myself hopefully finishing school and taking care of my wife,” he said. “I want to bring my wife home.”

His lawyers asked for $12 million for Terri’s treatment and care, on the presumption that she would live another 51 years, and $4 million to compensate Michael for the loss of his wife. The jury found the doctor only partly responsible. In the end, the trial and the settlement netted Terri about $700,000 and Michael $300,000.

Michael and the Schindlers would soon become adversaries. On Valentine’s Day 1993, they argued about the money. Michael said the Schindlers demanded a share of his award. The Schindlers say Michael refused to spend the money on Terri’s treatment. In any case, they never spoke to each other again.

After the argument, Michael took away the Schindlers’ privileges to view Terri’s medical records. He said he did it out of spite and later regretted it. Three years later, he would restore their access. The Schindlers unsuccessfully sued to remove Michael as Terri’s guardian.

In the summer of 1993, Terri developed a urinary tract infection. Doctors suggested Michael not treat the infection, and he agreed, he said. It was the first sign that Michael had given up some hope.

He also revealed for the first time to doctors — and the Schindlers were informed — that Terri had told him more than once that she would not want to be kept alive artificially, that the two had promised they would never allow each other to live hooked up to a machine.

When her parents objected, Michael ordered the infection treated.

His visits became less frequent, twice, maybe three times a week. He stayed about an hour at a time. He helped wash Terri’s hair and get her dressed.

By 1995, Michael was in love with and living with another woman, whom he had been seeing for about two years. They would eventually have a child, even though Michael stayed legally married to Terri.

In 1997, Michael’s mother died from cancer. The following year, Michael petitioned the court for permission to stop artificial feeding. In April 2000, after a probate judge approved the removal of the feeding tube, Michael moved Terri to a Woodside hospice. By then, he had finished nursing school and had started working as a respiratory therapist, the legacy of the years he spent caring for Terri.

Only after his mother’s death did Michael gain the emotional strength to end Terri’s life,” his lawyer George Felos said.

If the Florida appellate court permits Michael to stop feeding his wife, she will probably die within weeks. For patients already close to death, dehydration and starvation can be a relatively pleasant way to die, doctors say.

Terri’s eyes will become dry and bloodshot. Her face will become thin. In the final days, her body will begin shutting down. Her heart will beat faster as her blood volume drops from lack of water. Blood pressure will drop and her hands and feet will become cold and mottled. She will no longer urinate and her kidneys will fail as toxins build up in her body. An infection might set in. Before she dies, she might have seizures or fall into a coma. Eventually, for the second time in her life, her heart will stop.

TOMORROW: Her parents’ struggle.

Live Or Die? Debating A Woman’s Future

Last in a series: Seeing Signs Of Life; Woman is aware, her family says

Newsday

Tuesday, April 15, 2003

By Hugo Kugiya, Staff Correspondent


 

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.”

Terri Schiavo 1963 – 2005

Case setting another benchmark; Some experts say it created a more liberal standard for application of right-​​to-​​die laws

Newsday

Friday, April 1, 2005

By Hugo Kugiya, Special Correspondent

Hers was a life of ordinary contours and expectations. But the contentious death of Terri Schiavo became something for history books yesterday when she got the death her husband said she had a right to.

Although the case of the 41-​​year-​​old Florida woman did far less than previous landmark cases to shape laws regarding the termination of medical treatment, it likely will be remembered as the most problematic, most visible, most far-​​reaching and most dramatic of them all.

We might ask 10 years from now, ‘What was that all about?’” said Dr. Art Caplan, director of the Center for Bioethics at the University of Pennsylvania School of Medicine. “The case tapped into the American ambiguity between technology and religion.”

As Schiavo’s family fought over her treatment, as artificial feeding was halted, as she withered and finally succumbed, she got the attention of most of the nation and much of the world. A state legislature, a governor, the president, Congress and even the Vatican acted or spoke on her behalf — despite poll after poll showing that a majority of Americans thought she should be allowed to die without government interference.

National landmark cases

The amount of attention she received did not compare to that given Karen Ann Quinlan and Nancy Cruzan, two young women at the center of the nation’s other landmark cases. Those cases set up the laws that were applied to Schiavo.

This case will not make any difference in the laws,” said Dr. Steve Miles, a professor of medicine at the Center for Biomedical Ethics at the University of Minnesota. “Fundamentally, the Schiavo case was political exercise. It was a show.”

The cases of Quinlan and Cruzan pitted family against state. The Schiavo case pitted family against family.

Similarities and differences

What set apart Schiavo from all other cases was the family disagreement, not just about her course of treatment, but about her condition. The disagreements are almost without precedent. Our system for deciding medical treatment works well, most legal and medical experts said, except when families cannot agree.

Quinlan’s father successfully petitioned the New Jersey Supreme Court in 1976 to take his vegetative daughter off a respirator. Unexpectedly, she began to breathe on her own. She lived on a feeding tube for another nine years before dying of pneumonia.

Cruzan died in 1990 after a Missouri court allowed her parents to halt artificial feeding. But her parents had to go to the U.S. Supreme Court, arguing for her right to die, and procure the testimony of just about everyone their daughter knew to show she would not have wanted artificial feeding.

Like Schiavo, Quinlan and Cruzan were young when they became incapacitated, Quinlan from an overdose of alcohol and tranquilizers, Cruzan from a car accident. What set apart Schiavo was the depth of the family dispute.

Until Schiavo, courts have been reluctant to allow the end of medical treatment even when a patient’s entire family is in agreement. For that reason, Schiavo set a new benchmark, creating a much more liberal standard for the application of right-​​to-​​die law. Her case was the ultimate test, and not one that will likely be duplicated any time soon.

Lessons in Schiavo case

Schiavo is the rare case where the dynamics break down so much,” said Bill Colby, the attorney who represented Cruzan’s parents before the Supreme Court. “The law doesn’t have a way to measure life. The law can only go so far. The system worked. But to watch the rule of law work was not to watch a straight line.”

Cases in which death results from the withdrawal of medical treatment are routine. But they usually occur to the elderly and ill, with the family’s understanding and consensus. Most end with conversations between relatives and physicians or the hospital ethics committee. Very few end up in court.

The fallout from Schiavo’s death will be seen for months and years, Caplan said. The story, he said, “will be replayed when we talk about the death of the pope, when we talk about Oregon’s physician-​​assisted suicide law. Some state laws will be proposed that will get some traction.”

Legislators will discuss making feeding tubes mandatory, Caplan suggested, or setting standards for those making medical decisions for family members and restricting treatment without a family consensus. Existing laws — which say that everyone has the right to refuse medical treatment, including a feeding tube, and that a loved one can speak for an incapacitated patient — will “be pushed,” Caplan said, but will probably hold.

The lessons of Schiavo, Caplan said, will likely come up in cases of [underage] children on life support, an area where there is far less understanding and agreement.

Colby said Schiavo’s death amounts to a watershed moment. “A much larger percentage of society will put their wishes in writing and talk about them with their loved ones,” he said.