Earlier this week, I commented on the issue of privacy in regard to personal health information for public figures. This has emerged again with publication of Ron Reagan's biography of his father, "My Father at 100." While there may be some controversy about the accuracy of Ron's observations about the onset of his father's illness, as Dr. Lawrence Altman of the New York Times has pointed out, I do distinctly recall some odd events in press conferences during the final two years of the Reagan presidency.
Dementia, defined as a loss of mental or intellectual functions, often appears with such subtlety and progresses so slowly that its origin cannot be pinpointed. Not only that but the person who suffers from the deterioration often develops coping or cover-up mechanisms that disguise the initial losses from all but the most astute or trained examiners.
Despite Dr. Altman's comments that his own inquiries of White House physicians and staff failed to turn up evidence of Alzheimer's symptoms while the President held office, I remember several unsettling moments in those press conferences.
The president would listen intently to a reporter's question. After a momentary hesitation and initial comments in response, he would lose his way -- forget the thrust of the question -- and proceed to divert his answers to a completely unrelated issue: one that he felt more comfortable talking about and elaborate on his chosen topic. It was more than a diversionary political maneuver, it struck me at the time - it was clearly an "I am lost, help--I have no idea what that reporter asked me" situation. "I can grab a word or concept and run with it down the field," he seemed to be saying to himself, scoring one for the Gipper. This was not an isolated event but a recurring tactic.
I must admit that retrospective medicine is much safer to practice: if I know the patient's diagnosis before I begin the examination, I usually arrive at the diagnosis with amazing accuracy -- in fact, 100% accuracy. Can one ask for more? Nevertheless, I was not surprised, with my memories of those press conferences, when the public announcement of his disease state was made after he left office.
This of course takes us to a discussion of the newly emerging and apparently ever more accurate diagnostic techniques for Alzheimer's disease specifically, one radiographic and the other from spinal fluid, when to trust them, when to use them -- or in fact whether to use them at all. If there are no known effective treatments, as is the case, to arrest the progress of the disease or better yet to reverse its destructive effects, what is the point of early diagnosis?
Should one or the other prove undeniably accurate, and both do show promise with others close on their heels, one still needs to ask whether early diagnosis of an untreatable disease has value. As a research technique, yes. As a way of determining whether a hopeful drug is effective, yes. As a routine procedure, I would say no...unless it is so critical that the patient make elaborate plans for his or her life and demise.
Alzheimer's disease is generally not rapidly progressive. One could argue that there is ample time to prepare for eventualities, and for the most part that is correct. There are exceptions, and they may include cases in which there is some confusion about the proper diagnosis. But broad-based population screening is at this point premature and not the best use of resources.
I realize that I am treading on crispy territory, involving issues of rationing of care, but we need to unplug the loudspeakers that characterize our national debate about health care for a few minutes, leave aside all discussions of death panels rationing of care and similar shrill notes that contribute little to the debate or the delivery of health care
As an aside, no one in the world of medicine knows of death panels (whatever they are). At the same time, we need to acknowledge that rationing of care has long been in place in this country, courtesy of the insurance companies that determine what they will cover and what they will not cover. So one is non-news and the other is old news.
For Alzheimer's, the commonsensical and reasonable approach is to withhold the diagnostics until treatments have reached the point of effective treatments. That is not rationing but sound judgment.
Julian Fisher, MD is a Boston-based neurologist and medical information entrepreneur.
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