Jewish World Review March 6, 2006 / 6 Adar, 5766
An age of arrogance
"Declare the past, diagnose the present, foretell the future; practice these acts. As to diseases, make a habit of two things — to help, or at least to do no harm." — Hippocrates, "Epidemics"
The most revealing obituary in the paper the other day was that of a 44-year-old man many must have thought as good as dead for almost a decade — since December of 1995.
That's when a burning roof collapsed over the head of the Buffalo, N.Y., firefighter, leaving him blind, brain-damaged, largely mute and completely unaware of his surroundings. Or so it must have seemed from the outside looking in. Doctors held out little hope of his ever regaining consciousness, for Donald Herbert of Rescue Company 1, 2nd Platoon, had been deprived of oxygen for several crucial minutes.
This father of four had fallen into a years-long stupor. Some — not all — might have called it a case of PVS, or Persistent Vegetative State, which is always an inexact diagnosis. Indeed, it's less a medical syndrome than a misleading label.
Because, on April 30 of last year, the vegetable spoke. Indeed, he rattled on for 14 hours, much to the astonishment and delight of doctors, nurses, family, fellow firefighters and surely everybody else who'd heard about his case.
The patient had been treated with drugs normally used for Parkinson's patients, and which have led to dramatic, if short-term, recoveries in other cases. Until the weekend before he died, firefighter Herbert continued to speak and interact with others, though never to the extent of his original awakening.
Many of us have heard of PVS before, notably in Terri Schiavo's media-saturated, legally complicated, medically contested, personally agonizing, politically polarizing, just-plain-awful case and scandal.
Vocabulary is always the crucial ground on which these life-and-death issues are fought, and, as a label, Persistent Vegetative State is a good example of how the terms in which a debate is conducted shape its outcome. This one tends to dehumanize the patient, even de-animalize him.
Paul McHugh, university distinguished service professor of psychiatry at Johns Hopkins, has explained, in Commentary magazine, the origin — and effect — of the term Persistent Vegetative State in judicious language, as befits a physician and professor:
"It is perhaps because such patients display so lowered a state of vigilance that, in striving to define their condition, neurologists lighted upon a metaphor contrasting vegetation with animation. I remember teasing the admirable clinician who first coined this term that I had seen many patients but few carrots sleeping, waking, grunting or flinching from pain. Although the term 'vegetative' does distinguish what is lost from what remains in such a patient's capacities, it can also have the unfortunate effect of suggesting that there is something less worthy about those in this condition."
Dr. McHugh tells the remarkable story of one patient — "a man in his late 50s who, after a botched brain operation, had been left in an apathetic state not too different from Terri Schiavo's. Like her, he gave little evidence of awareness, responding mostly with groans and grimaces and moving little if at all. He had been in that state for several years when I took over on the ward; ultimately, he would live 13 years in this condition . . . .
"We young physicians felt honored to be caring for this man, who was of our fraternity. Prior to his injury, indeed, he had been quite simply the foremost clinical scientist in America. Among his many achievements, he had illuminated the functions of the parathyroid glands and so enlarged scientific knowledge of calcium metabolism, the dynamics of bone construction, and diseases of the bone like osteoporosis and osteomalacia."
As the resident neurologist, a younger Dr. McHugh had the unenviable challenge of finding something new to say about such unchanging cases as he took young interns with him on his daily rounds. "Soon enough," he remembers, "they began to grumble that I was repeating myself as I would note dutifully that, although Dr. A's apathetic state was profound and unchanging, occasionally such a patient might, if startled, give out a coherent response revealing some human consciousness."
One day, when one of the brasher interns challenged him on the point ("Enough of that, show us he can respond . . . ") Dr. McHugh shook the patient and asked him sharply: "Dr. A, what's the serium calcium in pseudopseudohypoparathyroidism?"
It worked. To quote Dr. McHugh, "For the first time in my experience with him, he glanced up at me and, loudly enough for all the interns to hear, said: 'It's just about normal.' A full and complete answer had emerged from a man whom none of us had ever heard speak before. His answer was correct — as he should know, having discovered and named the condition I asked him about. Subsequently, in all the months we cared for him, he would never utter another word. But what a difference that moment had made to all of us. We matured that day not only in matters of the mind but in matters of the heart. If we had ever had misgivings before, we would never again doubt the value of caring for people like him. And we didn't give a fig that his EEG was grossly abnormal."
What a piece of work is man! How noble in reason, how infinite in faculties!
But what if that distinguished doctor and scientist had never responded? What if the heroic firefighter had never awakened from his coma? Would that have made either of them less worthy of care? Would it have made it any more justifiable for any of us — doctor, judge, distant commentator — to say, yes, let them die?
Would any of us know what dreams were being dreamed, what memories relived, what delights rehearsed, what nightmares endured, within such a mind — a mind we do not know quite as much about as we may pretend?
When Terri Schiavo was denied food and water by order of the court, it took her 13 long, slow, agonizing days to die of dehydration. Thirteen days. It would have been kinder to shoot her. But that would have been against the law, and we know the law is just.
Funny how, long after you've forgotten everything else about some big story, one detail will stick in your mind. Have you ever sat by the bedside of a dying patient — a father or mother, perhaps, or someone else you loved — and given the patient a little chipped ice? And seen the relief and inaudible thank you in the drug-dimmed eyes? After all the futile treatments and the succession of helpless doctors, when grief has come even before the death, you sit there with a little cracked ice for the patient's parched mouth and throat, and think . . . At last I can do this one little thing right. I'm not totally useless.
However much or little the ice might help your patient, it does wonders for the caregiver. You suddenly realize why people go into nursing. Can there be any greater satisfaction than this?
But when the law decreed that Terri Schiavo was to be given no food or water, it meant no food or water. That's what the court, the sheriff's deputies, the whole clanking machinery of the law was there for — to see that the severe decree was carried out. That's what the new art and science of bioethics at the dawn of the 21st century had come down to in the end: No cracked ice for Terri Schiavo.
The doctors and nurses who had cared for her for years were now forbidden to give her even a single chip. That's the detail that has stayed with me.
What arrogance to decree that, because we deem another's life not worth living, it must be ended. But that is the spirit, or spiritlessness, of the age.
How far we have come from poor, backward, modest Hippocrates, who advised us: First do no harm. Ah, but how much more we have learned since his time. How much more advanced we are now! Yes, and how much we have forgotten. As knowledge has expanded, wisdom has shrunk.
Recommended reading: "Annihilating Terri Schiavo," by Paul McHugh, Commentary, June 2005. And "Buffalo Firefighter Who Awoke From Decade-Long Coma Succumbs to Injury," Firehouse.com, Feb. 22, 2006.
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