A PIECE OF MY MIND
Howard
W
E ALL KNOW THE DICTUM: A PHYSICIAN WHO CARES
for himself has a fool for a doctor. Does a simi-
lar rule apply when your child has a fever, your
mother has fatigue, or your spouse has unexplained weight
loss?
Howard is a 58-year-old psychiatrist who lives in ver-
dant Oregon. Kind, empathetic, generous, insightful, un-
complaining. Healthy. With a wonderful family and a dog
who commands a great deal of his attention. And walking
his dog was how his illness began.
The first symptom was thigh pain after the evening
walk. The pain resembled claudication, but it did not dis-
appear quickly with rest. Then the rigors started every
evening, followed by a morning respite. The trip to North
Africa suggested a tantalizing clue, but blood smears for
malaria were negative. What about the dental implant, his
love of gardening, or the travel a year ago to the Galápa-
gos? The infectious disease specialist, the neurologist, and
the rheumatologist each asserted that the illness belonged
to a specialty other than his own. A medication effect? He
was not on a statin, an obvious cause for muscle aches.
Could his growing narcotic usage reflect a psychiatric
diagnosis?
Increasingly immobilized by shaking chills, but without
fever, Howard spent a week in the community hospital. CT
scans, a PET scan, an MRI, nerve conduction, a skin biopsy
of an evolving rash, a muscle biopsy, and various blood tests
failed to reveal a diagnosis. The only abnormalities were a
slight elevation of muscle enzyme levels and a modestly el-
evated sedimentation rate. The hospitalist in charge of
Howard’s care ordered an empirical trial of prednisone, but
the diagnosis was still elusive.
As the chief of rheumatology at a major university hos-
pital, I frequently evaluate patients like Howard with com-
plex, perplexing histories. If neurologists diagnose some dis-
eases that they cannot treat, then rheumatologists treat some
diseases that we cannot diagnose. But Howard’s saga was
different in one overwhelming aspect: Howard is my younger
brother.
Like disease, being a physician in my family can be ex-
plained both genetically and environmentally. My father and
his brother, cousins, siblings, a sister-in-law, my wife, and
my children are all physicians. One brother is a neurolo-
gist, the author of three medical texts, and an expert on
muscle disease. Howard’s illness seemed to nestle some-
where between neurology and rheumatology, as if the psy-
chiatrist brother had intentionally sought a set of symp-
toms to force humility upon his siblings. Howard offered a
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reward for the correct diagnosis, but the nonphysicians in
the family were doing as well as the experts.
Consciously, at least, I was trying to avoid making deci-
sions about my brother’s care. But with diagnostic studies
having reached a seeming impasse and my brother still in-
capacitated, I began to lobby for a superior mesenteric an-
giogram to investigate the possibility of polyarteritis no-
dosa, a potentially fatal, rare disease primarily treated by
rheumatologists.
Unfortunately, all medical tests are imperfect and some
are more imperfect than others. The angiogram can be
normal, even when polyarteritis is later proved by biopsy.
And when the test result is deemed abnormal, some ele-
ment of subjectivity is often at play. Furthermore, the
treatment for polyarteritis is cyclophosphamide, a life-
saving choice if the diagnosis is correct and a potential
death sentence if the process is actually an infection
mimicking the autoimmune disease. During residency,
we jokingly called cyclophosphamide “vitamin C.” And if
cyclophosphamide is vitamin C, polyarteritis is a vitamin
C deficiency disease.
So the angiogram was done and the radiology fellow said,
“I think it’s normal”; and the senior radiologist said, “I think
it’s normal”; and they both said, “And when the chief comes
to conference tomorrow, he’s gonna read it as vasculitis.”
Both physicians had an excellent perspective on the chief
of radiology, because he did indeed conclude that the study
showed definite vasculitis. He proceeded to solicit an opin-
ion from an eminent emeritus professor, who echoed the
chief’s conclusion. While I too reviewed the angiogram, I
was less reassured when the chief indicated that his cer-
tainty was bolstered by the compelling clinical history, even
though I, as a rheumatologist, found the rigors and diurnal
fluctuation of symptoms unusual for a patient with polyar-
teritis.
There’s a well-known story about an obstetrician who
could predict the sex of the unborn with 100% accuracy with-
out sophisticated tests. To every future mother he said, “I
know that you are going to have a son. To show you how
certain I am, I will record my prediction in writing and seal
it in an envelope.” When a male child was delivered, the
parents marveled at the psychic ability of the physician. But
if a girl was born, the parents would understandably ques-
tion the physician’s predictive powers. In response he would
retrieve the sealed envelope, which always contained the
prophecy: Girl.
A Piece of My Mind Section Editor: Roxanne K. Young, Associate Senior Editor.
(Reprinted) JAMA, September 2, 2009—Vol 302, No. 9 929
A PIECE OF MY MIND
Knowing this apocryphal tale, I should not have been so
surprised that the official reading of the angiogram stated,
“While there are a few suspicious vessels in this angio-
gram, we would not base a diagnosis of vasculitis solely upon
this study.” In essence, the radiologists were predicting either
a boy or a girl. Such hedging is altogether frequent in our
profession. Although diagnoses are sometimes conveyed to
the patient as indisputable, every medical pronouncement
has an element of uncertainty.
I had sent my brother to two different rheumatologists.
The community rheumatologist who was consulted is su-
perb, although it was also clear he was uncomfortable mak-
ing decisions in the midst of such a medical family. And the
university rheumatologist is extremely talented, but I am
his immediate supervisor. He saw my brother relatively early
in the illness, when an autoimmune process like polyarteri-
tis was low on the list of possible diagnoses. The junior pro-
fessor thus pronounced his confidence that Howard’s ill-
ness was not rheumatologic. As the illness evolved and the
test results accumulated, I sought my colleague’s counsel,
but he would undoubtedly feel uncomfortable disagreeing
with me.
The hospital has a food chain: the student asks the in-
tern; the intern turns to the resident; the resident relies on
the staff, who in turn consults with the chief. As the chief,
I could seek advice from my junior colleagues, medical lit-
erature, and national experts.
So I described Howard’s history to two world-renowned
vasculitis experts, who both encouraged the use of cyclo-
phosphamide, although a consultant 2000 miles away is dif-
ferent from a consultant at the bedside. Howard was re-
lieved to learn that the Harvard radiologists were convinced
that he had polyarteritis. I never told Howard that the Har-
vard physicians said that the renal vessels—that the Or-
egon doctors deemed abnormal—were judged in Massa-
chusetts to be entirely normal. Instead the Harvard physicians
made the diagnosis based on putative abnormalities of the
mesenteric artery.
I have written several essays in my life, some published,
some not. I want to write a confessional called “I’m a Killer,”
about my patients who have had fatal reactions from a medi-
cation I prescribed. In an unpublished essay, I describe the
role of a physician as being akin to waiting tables in a res-
taurant. In an idealized world, we elaborate on a menu of
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options, telling the patient of the advantages and disadvan-
tages of each dish. My father’s medical practice was far more
paternalistic: an arm around the shoulder and a bit of au-
tocratic advice. I tried the restaurant approach with my
brother, only to discover that he and his physician wife
wanted me to choose the entrée.
As I see it, medical decisions should be made dispassion-
ately. But both the physician and the patient have emo-
tions. The physician must set this emotion aside and make
a decision based on logic. And the physician must ease the
emotional stress of the patient because that anxiety can rico-
chet through the decision-making process and perturb its
logic. I knew that by making a decision for my brother, my
opinion would never be devoid of emotion, and, in a sense,
it could not be logical. But Howard was now bedridden and
in pain, unable to work after two months of searching for a
diagnosis.
Confronted with ambiguous data on which to base a life-
threatening decision involving my family, I opted for cy-
clophosphamide and watched as it coursed through my
brother’s veins. When I wrote his orders, I faced a series of
decisions beginning with whether I should take responsi-
bility for my brother in the setting of uncertainty, some con-
troversy, and definite risk. Once I made the decision to take
charge, the choice of medication and dosage was straight-
forward by comparison.
Some degree of uncertainty touches every offer of medi-
cal advice. Touching too firmly creates a barricade. For me,
surmounting the obstacle of uncertainty to provide medi-
cal care for my family was hard. Not providing medical care
for my family would have been harder still.
James T. Rosenbaum, MD
Portland, Oregon
rosenbaj@ohsu.edu
Editor’s Note: Howard has responded promptly to cyclophosphamide. He has now
received 3 cycles of this immunosuppression, discontinued narcotics, and nearly
eliminated prednisone. He works full time and plays basketball more skillfully and
more energetically than his brothers. His dog is very, very happy.
Funding/Support: The author receives funding support from the Stan and Madelle
Rosenfeld Family Trust, the Fund for Arthritis and Infectious Disease Research, and
Research to Prevent Blindness.
Additional Contributions: I am grateful to Lisa S. Rosenbaum, MD, Sandra Lewis,
MD, Jennifer L. Rosenbaum, and Joe Ensign-Lewis, who critically reviewed the
manuscript.
Dedication: This essay is dedicated to the memory of my father (and Howard’s
father), Edward E Rosenbaum, MD, who passed away May 31, 2009.
©2009 American Medical Association. All rights reserved.