By Joel N. Shurkin
Terri Schiavo, 41, died this morning at her nursing home in Florida. She died 13 days after her feeding tube was removed and one day after her parents lost yet another futile legal manuever to have the tube replaced. An autopsy is scheduled.
What is usually a private matter amongst family members, became a major news event when the family split over her treatment. Her husband, Michael, wanted life support removed so she could die; her parents wanted her to be maintained on life support despite the fact she had virtually no chance of even a partial recovery.
She became the political symbol of craven and in some cases, hypocritical politicians and of social conservatives from the anti-abortion fringe. Her parents became the tools of extremists ranging from the demented Randall Terry to quacks making diagnosis from videotapes so they could get on television. By the time of her death, Congress had challenged the separate powers concept of the American constitution by intervening, and extremists were threatening the independence of the judiciary, even insisting that the governor of Florida send troops to rescue her, contrary to the rulings of both state and federal courts, essentially a coup. In the meantime, she served as the fulcrum for a serious and important debate on how to treat people who lie at the cusp between life and death. Thoughtful people were forced to confront their definitions of mortality, of the existence of a soul, and the powers of government. We owe her for that.
She knew none of this. Ms. Schiavo had been in a persistent vegetative state (PVS) for 15 years.
What that condition means, has been the topic of fervent debate, usually by people who have no clue what a persistent vegetative state is. Extremists have used those misconceptions and ignorance as weapons in their battles to enforce their religious views on everyone else.
The news networks--especially the cable networks--have been running a video tape for weeks that may be responsible for many of the misconceptions. It is a question of confusing coma with PVS. Had she been in a coma, we wouldn’t be paying much attention.
The tape, edited down from hours, shows her moving, seemingly smiling and reacting to stimuli from her family. Her eyes move, parts of her limbs tremble. It is not hard to assume, looking at the tape, that Terri Schiavo is in there somewhere. She probably isn’t.
"It confuses people who look at her," says Dr. Tom Raffin, the Colleen and Robert Haas Professor Emeritus of Medicine/Bioethics, Division of Pulmonary and Critical Care, and director emeritus of the Stanford University Center for Biomedical Ethics at Stanford University. "She does these things, but that doesn’t mean she can think."
There is a huge difference between a person in a coma and a person in a persistent vegetative state, Dr. Raffin says. A person in a coma is "locked in." If they recover--and many do--they may have cognition. Until then, they are unconscious, unmoving. Their brain has essentially shut down.
A person in PVS is not locked in.
"Their eyes are wandering and it looks as if something is going on, but nothing is," he said. "It is common for loved ones to think there is contact even when there isn’t. The patient reverts to primitive reflexes, the reptilian part of the brain. They can track people with their eyes without cognition. She [Ms. Schiavo] does those things. That doesn’t mean she thinks. She will have reflexes, be startled, but there is no cognition going on."
Brain scans show remarkably slowing brain waves, he said. Scans of Ms. Schiavo's brain also show the middle section almost scooped out, with the brain matter replaced with fluids. Any communication between her brain and her body is likely in one direction, the reflexive motions.
A person with PVS looks exactly as Ms. Schiavo does.
Her chances of recovery are "as close as you can get to zero," and any doctor who says she can recover with rehabilitation is "a liar."
Dr. Raffin said that if he were judge and there was evidence she was not in a PVS, he would not let them remove the feeding tube. But she clearly is.
The rulings by the Florida courts, which seem to so enrage a vocal minority of the population, are perfectly consistent with the law and precedent.
Two doctors in California were charged with homicide several years ago for withdrawing life support. A nurse complained to the district attorney. Charges were eventually dropped. There are cases in which doctors have refused family instructions to pull the plug, fearing malpractice suits, although they are very unlikely if the family wants the procedure.
In the "Baby Jane Doe" case in New York, a case with some parallels to the Schiavo case, parents of a severely retarded and crippled child born with spina bifuda refused to permit surgery that would have kept her alive, although still severely retarded and crippled. New York courts ruled in their favor. But an anti-abortionist doctor from Vermont took them to federal court to force the surgery, claiming the parents had no right to decide if the baby should die. Encouraged by the Reagan administration, he asked a federal court to intervene and order the procedures.
"These people have no right to be here at this time in our lives," the father said.
"What the parents want is not a factor here," the lawyer said.
The court ruled it was, and the surgery was never performed.
In the Karen Ann Quinlan case in New Jersey (1975), the courts ruled that without a directive from the patient herself, the family (she was unmarried), the doctor and the hospital’s ethics committee had the right to decide her fate. The respirator was turned off, but Ms. Quinlan lived another 10 years in a PVS before dying.
New Jersey courts and many others have ruled that what the patient wants, trumps all other considerations, and those desires "are not to be decided by societal standards or reasonableness or normalcy[emphasis added]. Rather, it is the patient’s preference--formed by his or her unique personal experiences--that should control." If the patient can’t decide, members of the family or whoever the physician thinks most appropriate decides. In most cases, that would be the spouse.
The Schiavo case fits well within that ruling law.
What did she want? According to the testimony of her husband, substantiated by others, she did not want to live as a vegetable. The judge believed the testimony--that she was in a PVS and she did not want to persist in that state--and ruled, as almost very other court would rule, that the husband has the right to decide, and if he says she should be taken off life support, that’s what should happen.
Dr. Raffin has seen this all before.
"It’s a very tragic situation," he said. "You have parents and siblings who want her alive. It’s not unusual.
These situations happen every day in hospitals, and no one says anything. It only becomes the lead story on CNN and Fox News when others get involved for reason that go well beyond the welfare of the patient.
"If I were King Solomon, I would say to Michael [Schiavo], why don't you divorce her and let her family decide. But things are too polarized by now for that to happen."
Ms. Schiavo likely felt no pain.
She was long since gone elsewhere and is, one hopes, at peace.