2003-04-14 From: Newsday, NY,US
Seeking Right to Death
http://www.newsday.com/news/nationworld/ny-usschi0414.story Fla. man says wife wouldn't want to live in vegetative state
By Hugo Kugiya
Staff Correspondent
April 14, 2003
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 partially 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.
http://www.evelynmartens.ca/en-newsday-030414.html