Should a
doctor replace an accustomed identity with a meaningless “reality”?
Letting patients perform roles that are
familiar from their earlier lives may help them inhabit an accustomed and
well-rehearsed identity.
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:
He is always “on the
go,” and for much of the time seems to imagine he is still a doctor here; will
speak to other patients not as a fellow patient but as a doctor would, and will
look through their charts unless stopped.
On one occasion, he
saw his own chart, said “Charles M.—that’s me,” opened it, saw “Alzheimer’s
disease,” and said, “God help me!” and wept.
Sometimes he calls
out, “I want to die. . . . Let me die.”
Sometimes he fails to
recognize Dr. Schwartz, sometimes he fondly calls him “Walter.” And I had a
very similar experience this morning: when he was brought into [my office], he
was very agitated and driven, would not sit down, let me talk with him [or]
examine him. A few minutes later, by chance, when I passed him in the corridor,
he instantly recognized me (having forgotten, I think, that he had seen me a
few minutes before), called me by name, said, “He’s the best,” and asked me to
help him.
Mr. Q. was
another patient, less demented than Dr. M., who resided in a nursing home, run
by the Little Sisters of the Poor, where I often worked. He had been employed
for many years as the janitor at a boarding school and now found himself
in a somewhat similar place: an institutional building with institutional
furniture and a great many people coming and going, especially in the daytime,
some in authority, and dressed accordingly, others under their guidance; there
was also a strict curriculum, with fixed mealtimes and fixed times for getting
up and for going to bed. So perhaps it was not entirely unexpected that
Mr. Q. should imagine that he was still a janitor, still at a school
(albeit a school that had undergone some puzzling changes). And if the pupils
were elderly or sometimes bedridden, and the staff wore the white habits of a
religious order, these were mere details—he never bothered with administrative
matters.
He had his job:
checking the windows and doors to make sure they were securely locked at night,
inspecting the laundry and boiler rooms to make sure all was functioning
smoothly. He would check the kitchen to make sure all the gas rings were turned
off and no perishable food had been left unrefrigerated. The sisters who
ran the home, though perceiving his confusion and delusion, respected and even
reinforced the identity of this somewhat demented resident, who, they felt,
might fall apart if it were taken away. So they assisted him in his janitorial
role, giving him keys to certain closets and encouraging him to lock up at
night before he retired. He wore a bunch of keys jangling at his waist—the
insignia of his office, his official identity. And, though he slowly became
more and more demented over the years, he seemed to be organized and held
together in a remarkable way by his role, the varied tasks of checking,
cleaning, and maintenance that he performed throughout the day. When
Mr. Q. died, of a sudden heart attack, he did so without perhaps ever
realizing that he had been anything but a janitor with a lifetime of loyal work
behind him.
Should we have told
Mr. Q. that he was no longer a janitor but a declining and demented
patient in a nursing home? Should we have taken away his accustomed and
well-rehearsed identity and replaced it with a “reality” that, though real to
us, would have been meaningless to him? It seemed not only pointless but cruel
to do so—and might well have hastened his decline. ♦
This article appears
in the print edition of the March 4, 2019, issue, with the headline “Telling.”
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