Thursday, June 02, 2005

Just about normal

Terri Schaivo Paul McHugh tells us of a patient in a similar state to Terri, reminding us that PVS is distinctly not the same thing as brain death. For the expansion of that term we have to thank the Cult of the Self:
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. From his specific studies, he had discerned general principles (including organ resistance to hormonal action, a concept prefiguring the receptor revolution in endocrinology), and he made leaders of his students by teaching them how to employ biological science in investigating the pathogenesis of human diseases. In a relatively brief academic career, he had changed the face of American academic medicine and pointed the way to the future. So we were pleased to care for him. But this did not ease the task before me upon visiting his bedside each morning as I searched for something interesting to say to my jaded interns. Soon enough 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. Looking at the man lying before them, they thought they had ample reason to doubt the applicability of my ideas to this case. A particularly bold intern challenged me one morning: "Enough of that, show us that he can respond." I knew perfectly well that I was being baited over a matter where I was unsure of my ground, but I moved briskly from the records cart to the bed, shook the patient by the shoulder, and asked in a sharp voice: Dr. A, what's the serum calcium in pseudopseudohypoparathyroidism? 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 sentence 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. Somehow, deep inside that body and damaged brain, he was there and our job was to help him. 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.
McHugh also reminds us not to buy the argument from the cheerleaders, that "the heirs to Goldwater and Reagan seemed to forget how they came to control the values debate in America in the first place: not by interfering in the moral choices of families but by promising to stop government from doing exactly that." To that, McHugh's rejoinder is worth repeating:
Many a hidden assumption lurks in that statement, not least concerning the (assumed) wishes of the dying woman herself. It is worth reminding ourselves, moreover, that she succumbed in the end by being deprived of food and water by order of the courts which is to say, by order of government.
Interesting isn't it, that the "there's no such thing as normal" people use a very narrow definition of that term to starve a person to death over two weeks. She's not like us, and we wouldn't want to be her, so... McHugh's brief analysis of how we got here is most interesting:
Hospital administrators are generally pleased with bioethicists and the rationalizations they provide for ceasing care of the helpless and the disabled. By the same token, [bioethicists] presence is generally shunned by doctors and nurses, whose medical and moral vocabulary draws from different sources, and whose training and experience have disposed them in a different direction. To most doctors and nurses, in any case, the idea that one can control the manner and pace of oneĆ¢€™s dying is largely a fantasy. They have seen what they have seen, and what they know is that at the crucial moments in this process, no document on earth can substitute for the one-on-one judgment, fallible as it may ultimately be, of a sensible, humane, and experienced physician.
The Cult of the Self takes on Expertise. Stay tuned.

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