Assumptions and Attitudes Don’t Survive Cancer

Abigail Zuger M.D. in The New York Times:

BookDoctors who become ill have written about the emotional whiplash of the experience so often that the “had I but known” theme has grown a little old. Two new books bring some welcome variation: Many other professionals spend their workdays focused on the body, and even those who don’t actually perform hands-on care may find precious assumptions demolished by serious illness. Ethicists are medicine’s theoreticians; some are primarily scholars, while others head right onto hospital wards as a combination of critic, coach and umpire. They come to know the terminology of illness and the perils of treatment very well, and because insoluble clinical problems are their daily fodder, they have rehearsed the standard “if this ever happens to me” scenario as often as anyone. Still, nothing prepares anyone for the horizontal experience, as seven medical ethicists discovered when they or a spouse received a diagnosis of cancer. They were so collectively shaken that they formed a discussion group, and then, like good academics, turned the proceedings into a book.

Rebecca Dresser, editor of “Malignant,” is a professor of law and medical ethics at Washington University in St. Louis and a survivor of oral cancer. As an ethicist, she has a firm professional commitment to patient autonomy, the doctrine of “it’s your body and you alone decide what happens to it”. As a patient, she got herself into serious trouble wielding that autonomy: Unable to eat or drink, she firmly refused a feeding tube until she almost starved to death. Finally, her caretakers strong-armed her into changing her mind, and she eventually made a full and grateful recovery.

As director of the bioethics program at the University of Wisconsin, Dr. Norman Fost regularly deplores our national pastime of wasteful and unnecessary medical testing. Yet as a patient, he writes, he has personally benefited enormously from just such testing, with not one, not two but three separate serious illnesses diagnosed with entirely unwarranted tests, leaving him with a bad case of what he calls “hypocrite’s guilt.”

More here.