Terry Schindler Schiavo
Terry Schiavo, aged 39, has had her feedings stopped by court order. It is not clear how long it will take her to die; it has been six days so far. She suffered brain damage after a heart attack in 1990.
[Update: Governor Jeb Bush of Florida managed to get the state legislature to pass a bill to resume Terry's feedings. This bill, in turn, will be challenged in court.]
Her husband, who has long since started a new life with another woman whom he has not married, but with whom he has one child and is expecting another, has sought to "end all treatment" of his wife, and "allow her to die" as he says she would have wished. Her parents claim that she is responsive, albeit severely disabled, and they have some hope that some therapy might actually improve her condition, if only marginally.
Michael Schiavo claims, with some support from physicians, that his wife is in a "persistent vegetative state." The text book definition includes: there are periods of wakefulness (unlike a coma), but no real consciousness (hence no pain) and no response to the environment.
All such cases remind me of our daughter, who is now 15. One of the specialists who treated her in Minnesota, shortly after her birth, spoke to us once about the Nancy Curzon case. [Oops. Check spelling below] He said that in his considerable experience, including work in intensive care, with accident victims and dying patients, he had probably never seen a true case of PVS. (He certainly didn't think our daughter was such a case, although her awareness is obviously quite limited). With Curzon being moved to Minnesota in order to stop her feeding, he was worried that PVS was being used as a diagnosis that would allow someone to be killed. He was also worried that Minnesota might become a dumping ground for such cases.[Update: it was Christine Busalacchi, also from Missouri, whose father intended to move her to Minnesota in order to discontinue feedings. There may have been even more doubt in her case than in Curzan's that she was in a "persistent vegetative state," and there was evidence that she could actually be fed by mouth. Nevertheless, all feedings were stopped and she died--in Missouri.]
Update: The Nancy Cruzan case went to the U.S. Supreme Court in 1990. Summary from the PBS Frontline transcript: "TIM O'BRIEN, ABC News: The Supreme Court ruled today the Cruzans had no Constitutional right to remove their daughter's feeding tube, rather states have the right to insist on clear and convincing evidence it's what the victim would want. Chief Justice William Rehnquist said the parents' wishes were outweighed by the state's interest in the preservation and protection of human life and the state's right to guard against potential abuse."
Based on the U.S. Supreme Court decision, a Missouri court could grant the legal guardian the right to end Nancy's feedings, provided there was "clear and convincing evidence of the patient's wishes." Several people testified that Nancy would not have wanted to live as she was, and the right to cease feeding (and hydration) was granted.
It took Nancy 12 or 13 days to die, in December of 1990, after her feeding tube was disconnected. She died in Missouri, her home state, not Minnesota. Another web site points out: "The case concerns artificially administered (via feeding tube) nutrition and hydration, not life-sustaining medication or artificial breathing support. Medical ethicists often regard turning off nutrition/hydration as more questionable step than turning off a ventilator, say, because patients can sometimes breathe without aid from a machine, but no one can survive without food and fluids."
Karen Anne Quindlan continued to breathe after the ventilator was turned off. Her case was decided by the New Jersey Supreme Court in 1976 (the U.S. Supreme Court refused an appeal), which said Karen's right to privacy in making decisions on medical care extended to her legal guardian when she was unable to speak. "Karen Quinlan's parents did remove her from the respirator thinking this would allow her to die. However, she did not die. In fact she lived in a persistive vegetative state until 1985, when she died of pneumonia."
It seems only human to wish that such cases never arose, and when they do, to wish for them to end quickly.
I have found an article by Chris Borthwick (I've never heard of him before) that says the PVS diagnosis was always murky at best: how does one prove lack of consciousness? and there has been an effort to make it even murkier, while making it available to more patients or families: someone can be diagnosed this way either if they are unlikely ever to have true consciousness, or if they are most likely to be severely disabled.
I think there is a strong public sense that too many people are kept alive by modern medicine; it is like Frankenstein, etc. It is certainly possible that many benefits could flow if some apparently ethical way could be found of killing people who would otherwise require long, difficult and expensive care. One point Borthwick makes is that it helps the case for abortion on demand to point out that there are human beings who have no consciousness, are not sentient, and feel no pain, of whom it would be wrong to say they have a "right to life."
"The difficulty is that the Multi-Society Task Force is not willing to admit to the public - are perhaps not prepared to admit to themselves - that these benefits may have attached costs. They would seem to believe, perhaps rightly, that if they concede any considerable degree of uncertainty in the situation of PVS patients they will not be permitted to bring these benefits about. This means that any such gains - the reassurance of families, the status of physicians, the arguments of ethicists, the reform of hospital budgeting - are effective only because they are founded on lies. The truth is that none of these benefits can be obtained without taking a high risk that some people who are or will become conscious and aware will be treated as if they were irretrevably insentient."
One patient who was diagnosed as PVS, and who had indeed said in her healthy days that people should not be kept alive when they are severely disabled, eventually recovered full consciousness, and even the ability to speak. She then said she had changed her mind--we shouldn't be too quick to end the lives of people who can't speak for themselves. One expert then went to the trouble of saying that even a patient who speaks clearly and lucidly might still be an example of PVS. As Borthwick says, this is beautifully Monty Python.
My wife and I have long since given up any hope that our daughter's condition is going to improve. Nevertheless, it has always been clear that she responds to pain or discomfort (less so to pleasure), and when she is comfortable she seems clearly aware of her surroundings, and even curious about them. Reports suggest that Terri Schiavo shows even more awareness than that.
It seems to me that the people going to great lengths to ensure that she dies (probably painfully) are thinking of ending their own discomfort at least as much as hers.
Update: Dahlia Lithwick says in Slate that U.S. law is clear: a patient can refuse any treatment, and leave a living will for situations where the patient is unable to speak. A legal guardian has the same right as the patient him/herself to refuse treatment. Letting someone else override the legal guardian simply raises more issues as to who has medical competence, etc.
"The only issue on the table is who best knows what you'd have wanted for yourself. The courts must conduct a thorough inquiry to that end--is this guardian fit? Is he in fact expressing the patient's wishes for herself? Is her medical condition indeed irreversible? In this [Schiavo]case, the courts have done all this. Medical experts have spoken. Michael Schiavo was not given this decision cavalierly. It was given him as his wife's partner and caretaker, someone she took until death do us part."
My question: doesn't it make a difference if the diagnosis of persistent vegetative state is always murky?
Update: Thank you, Mickey Kaus, for strongly suggesting that there are probably decent and intelligent people on both sides of this debate. Kaus complains about an NPR broadcast that suggested all the good people are on the "husband's side," not the "anti-death" side.
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