Even before my own medical education, I learned an essential truth about doctoring from my parents, both physicians: that being a physician involves much more than handing out diagnoses and treatment; it involves playing a role in some of the most intimate decisions of a patient’s life. This requires a considerable amount of human delicacy and judgment, no less than medical judgment and knowledge. If there is a serious, perhaps life-threatening or life-altering condition, what should one tell the patient, and when? How should one tell the patient? Should one tell the patient? Every situation is unique, but, for the most part, patients want to know the truth, however dire it is. They want to hear it delivered with tact, though, and with a sense, if not of hope, then at least of how such life as they have left can be lived in the most dignified, fulfilling way.

Such telling assumes a whole other order of complexity when a patient has a form of dementia, for here one is intimating a sentence not only of death but of mental decline, confusion, and, finally, to some degree, loss of self.

This became particularly complicated, and tragic, with Dr. M. He had been the medical director of a hospital where I worked, and he had retired in his seventies. But a decade later, in 1982, he came back—this time as a patient with moderately advanced Alzheimer’s. He had started to have major difficulties with recent memory, and his wife described him as often confused and disoriented—and sometimes agitated and abusive. She and his doctors had hoped that admitting him to the hospital where he once worked, with surroundings and people he might find familiar, would have a calming and organizing effect on him. I myself and some of the nurses who had worked for Dr. M. were aghast when we heard of this—first that my former chief was now demented, and then that he was to be institutionalized in, of all places, the hospital he had once ruled over. It would be horribly humiliating, I thought, almost an exercise in sadism.

A year after his admission, I summarized his state in a note for his chart:

I have the melancholic task of seeing my former friend and colleague, now fallen upon such evil days. He was admitted here just a year ago, with the diagnosis . . . of Alzheimer’s disease and multi-infarct dementia. . . . The first weeks and months here were exceedingly difficult. Dr. M. showed incessant “drive” and agitation, and was put on phenothiazines and Haldol to calm him. The effect of these, even in very small doses, was to cause severe lethargy and parkinsonism—he lost weight, he fell constantly, he became cachectic, looked terminal. With the cessation of such drugs, he has regained his physical health and energy—walks and talks freely, but requires constant attendance (for he would wander off, and is erratic and unpredictable in the extreme). There is striking fluctuation in his mood and mental state—he shows “lucid moments” (or minutes), and returns to his formal, genial personality, but for most of the time is lost in severe disorientation and agitation. Undoubtedly the relation with a devoted attendant is good—and the best we can do. But, unhappily, he is driven and distraught for [much of the time]. It is difficult to know how much he “realizes,” and this fluctuates profoundly, almost from second to second. He enjoys coming to the clinic and yarning of “the old days” with [the nurses]. He seems most at home here, doing this . . . and at such times may be amazingly coherent, able to write (even write prescriptions!).

At such moments, when Dr. M. stepped into his prior role as a hospital director, the transformation was amazingly complete, even if brief. It happened so quickly that none of us quite knew how to react, how to handle this unprecedented situation. But these were rare interludes in his frenzied, driven life. In his chart, I wrote: