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Volume 1, Issue 2
Summer 2005:

Letting Go: What Terri Schiavo's Ordeal Teaches Us

Gerald W. Neuberg, MD

Cell 2 Soul. 2005 Summer; 1(2):a16

As a physician, I know that end-of-life decisions as difficult as the case of Terri Schiavo are made every day, based on the medical situation, patient wishes, and the law. New York protects incapacitated persons by requiring "clear and convincing" written or verbal evidence of a patient's wishes before feeding is withheld, and by requiring either clear evidence or proxy power before more advanced forms of life support are withdrawn. Most disputes are resolved privately, as they should be, with rare intractable cases properly left to the courts.

Was Terri vegetative or was she minimally conscious? I don't know, but the limited signs of wakefulness that we saw on videotape do not prove awareness. According to neurologists, such signs can be seen in vegetative patients, even if their EEGs show the brain wave pattern of unconsciousness.

The more important question is: Which condition is worse? That's not obvious. Do people in either state want artificial feeding? Most say they would want life support while there is reasonable hope of meaningful recovery, but not in the event of terminal illness, permanent unconsciousness, or severe and irreversible brain damage.

Is tube feeding an extraordinary form of support? No. It is not as burdensome as CPR, respirators, dialysis, or even drug treatment, so it is usually the last form of medical technology to be withheld or withdrawn.

Is there any downside of tube feeding? Yes. It prolongs the dying process artificially and thereby allows moribund patients to experience an unnatural degree of physical deterioration and pain before the inevitable occurs.

What were Terri's wishes and what were the family's motives? Outsiders can't judge. Of course, if there is reasonable doubt about a patient's wishes or prognosis, we should err on the side of preserving life, as was done in Terri's case prior to the final court decision.

Do we need a law to require feeding in cases without written directives? No, the clear evidence standard that we have in New York is protective enough. Written directives are too hard to come by, especially among underprivileged groups.

Did Terri try to speak at the 11th hour? That's unlikely after 15 years. Doctors don't know everything, but we do know that families of brain-damaged patients can be fooled by their wishfulness into seeing things that more objective observers do not. A tragic exception is the "locked-in" syndrome, an unusual type of stroke in which patients are completely paralyzed but remain alert, and can communicate by blinking. I have seen a case in which the family recognized this before the doctors and nurses did, but soon it could be demonstrated easily to anyone. Not so in the Schiavo case.

I certainly sympathize with the Schindlers' anguish and their inability to accept a grave diagnosis and to let go, though ordinarily acceptance does come after some time and compassionate counseling by physicians, nurses, clergy and friends. It was hard to imagine any medical reason to expect Terri to recover after so long. Whoever said otherwise did a terrible disservice to her parents, who may never feel they did enough for her, despite having taken her case through every branch of government.

I also sympathize with Michael Schiavo, who gave Terri more than enough time to recover, and I believe most of us would want our survivors to get on with life. Why didn't he simply let the Schindlers take custody, and avoid turning her misfortune into such a cruel spectacle? I wish I knew. Maybe he was sincere about her wishes. Was it suspicious that he changed his mind after so long? Not really. Families hold on to hope until the prognosis becomes more clear to them, sometimes long after their doctors and nurses have found the patient's illness to be irreversible.

It's time to let Terri go, and for each of us to protect our families by appointing a proxy and talking about what we would want, if, Heaven forbid, we found ourselves in Terri's situation.

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