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2199
LISTEN TO THE PATIENT
“. . . his patients should
be his book, they will
never mislead him.”
Paracelsus, 1493–1541
Book of Tartaric Diseases
For more than 50 years, Cancer has been devoted to exploring every facet of
malignant neoplasia, from morphology to therapy, from epidemiology to biology, from historical perspective to basic science. One aspect, however, needs
emphasis, namely, the human being who bears the burden of the cancer. For
this reason and with the encouragement of the Editor, we have undertaken to
remedy this situation by directing attention to the fears and frustrations, hopes
and expectations, and feelings and thoughts of all kinds of the person who has
cancer, who is worried about it, and who is dependent wholly on physicians
specialized in its diagnosis and management. For doctors to be understanding
of the very deep needs of patients with cancer, it is requisite that they be privy
to authentic, but often unspoken, expressions of a patient’s anxieties about
physical and emotional pain, loss of control over personal destiny, and plain
dread of dying and, with that, the end of cherished relationships.
The essay that follows is by a patient with cancer who also is a physician. It is
the first in what is hoped will be a series of pieces in this journal that will
provide insight into the innermost feelings and reflections of patients with
cancer, the purpose being to enable those who are charged with care of them
to be able to care better; to care, more empathically. We hope that those who
read these lines and these essays will encourage patients to contribute something of benefit to this series.
Barrie R. Cassileth, Ph.D. Department of Integrative Medicine Memorial Sloan
Kettering Cancer Center New York, New York A. Bernard Ackerman, M.D.
Ackerman Academy of Dermatopathology New York, New York Cancer 2000;88:
2199 –200. © 2000 American Cancer Society.
Exposure
Ruth H. Lerman,
M.D.
Henry Ford Health System, Division of Geriatrics, Detroit, Michigan.
M
The author wishes to thank Barrie R. Cassileth,
Ph.D., and Rachel Remen, M.D., for their kind
assistance and her beloved husband, Mark
Sinkoff, M.D., for everything.
Address for reprints: Ruth H. Lerman, M.D., 5095
Far Ravine Court, West Bloomfield, MI 48323.
Received February 24, 2000; accepted February
24, 2000.
© 2000 American Cancer Society
y first breast carcinoma was diagnosed at age 38 years. My risk
factors were minimal and I had numerous “protective” factors.
Nonetheless, my internist-husband perceived a subtle change and mammography demonstrated branching calcifications in the suspicious area.
Biopsy revealed a 2-mm, high grade, invasive carcinoma surrounded by
several small foci of ductal carcinoma in situ (DCIS). Sections of tissue
from the mastectomy specimen contained two small foci of DCIS, but
sections from the lymph nodes showed no metastasis. There was no
further treatment. I knew that the 5-year “cure” was arbitrary, but I still
had planned to celebrate when I reached it. Instead, I was diagnosed
with a colloid carcinoma, clearly a second primary tumor, in the notably
thin, postmastectomy skin flaps 5 years to the month after the first tumor
was diagnosed. That news came 2 weeks after my father’s funeral.
As I made the rounds of many consultants, I longed for someone
to say “This is sad. It isn’t fair. It shouldn’t have happened.” I
reflected on the first patient I ever cared for. I admitted him on the
2200
CANCER May 15, 2000 / Volume 88 / Number 10
first day of my first rotation as a third-year medical
student. He was 6 years old. His parents were loving
and very concerned. I liked all three of them and was
eager to help. In a few days the diagnosis of a Stage IV
neuroblastoma was made. I was not there when the
parents were told. They asked that I see them as soon
as I returned to the floor. My sense of panic was
palpable as the nurse escorted me to the consultation
room.
“What can I do for them? What questions can I
answer that the attending did not or could not?” Their
need for comfort and support was communicated
through tearstained faces as I sat down. “I’m so sorry,” I
stammered and then I wept with them. My tears conveyed my sadness at their son’s fate. It would have been
even better to share with them my feelings that his
illness was unjust, that it should not have happened.
Years of practice in internal medicine/geriatrics
have now passed. I’ve cared for many patients
whose burden seemed more than they should have
to bear, but it took my own personal history to
heighten a sense of tragedy. My own experience
with my disease revealed to me that I needed my
physician to share my sadness and acknowledge the
injustice.
My husband has been struck by the number of
men who wait with partners, a spouse, or another in
the reception room of physicians who care for patients
with breast carcinoma. The very presence of these
men, their demeanor, and the tone of each couple’s
conversation conveyed that they perceived correctly
the seriousness of the situation, not one that is necessarily insurmountable or incurable, but nonetheless
very sad. In an oncology practice, virtually every face
in the waiting room, every name on the schedule,
represents a family that is suffering. In the months
prior to the diagnosis of my second carcinoma, I had
begun using a focused pause, a deep breath, or a
prayer before entering the examination room of my
seriously ill patients. This helped me reconnect with
the sadness and injustice of their illness. It also helped
me transfer my focus from grieving over my father’s
imminent death to caring properly for my patients.
In contrast to this increasing recognition of both
the needs of my patients and my own, most of my
medical training had encouraged me to adopt a persona of invulnerability in dealing with these all too
many daily connections with tragedy. Even as a patient, I was challenged to maintain that invulnerability. One example of this challenge is particularly poignant to me. My breasts and I were invited to attend
Tumor Board, along with my husband because he was
a member of the “doctor club.” While wearing a gown,
I saw tissue sections of my carcinoma projected and
heard the discussion about my diagnosis, treatment,
and prognosis. Two surgeons examined me as I kept
my back to the rest of the group. Uninvited, I clarified
my own goals for treatment before any of the physicians’ opinions were offered. Breasts, husband, and I
were asked to leave the room to permit uninhibited
deliberations to take place.
I accepted the offer to attend that session because
it was a rare opportunity to draw on the intellect of a
renowned group of experts. By attending personally,
by speaking up, and by being examined, I could be
certain that their opinions were based, at least in part,
on my own reality and not on some misconception. As
a physician-patient I thereby was privy to more information and had greater authority for my care than the
usual patient. Afterward I wanted more than intellectual expertise. I needed a physician to say, “That must
have been difficult. You conducted yourself well.” Or it
might have been helpful just to hear an expert physician express uncertainty by saying, “I don’t know if I
could have done that.”
Throughout my travels to offices of physicians and
to hospitals because of my disease, I have met several
physicians who through their words and manner
came across to me as unassuming and understanding.
They enabled me to express my fears and overcome
psychologic issues surrounding my disease and the
treatment of it. They encouraged me to be human, to
take time off from work for my overall well-being,
rather than to tacitly encourage the facade of maintaining an invulnerable physician persona at all costs.
Although I found something of value in every contact
I had with physicians during my visits, the encounters
I treasure most are the ones in which physicians in the
room, as I had, exposed themselves as the vulnerable
human beings that we are.
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