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From:
"Edward E. Rylander, M.D." <[log in to unmask]>
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Oklahoma Center for Family Medicine Research Education and Training <[log in to unmask]>
Date:
Fri, 28 Dec 2001 00:17:04 -0600
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The Subtle Power of Compassion

JAMA   Vol. 286 No. 24, December 26, 2001

Author Information <http://jama.ama-assn.org/issues/v286n24/ffull/#aainfo>
Teresa Gilewski, MD


He stood before us and said he wasn't sure that he had anything to say that
would be worthwhile for us to hear. I suppose that some in the audience
initially wondered the same thing. As his story unfolded, however, he easily
pulled us into his world, 15 years ago, when he began his struggle against
cancer. He was a tall man with an athletic physique, so it was difficult to
imagine him 60 pounds lighter, bald, and enduring the physical and emotional
pain that came with his illness. His plans after graduation from college
were drastically changed with the discovery that he had metastatic
testicular cancer. For three years he underwent numerous chemotherapy
regimens and operations to treat the cancer and its associated
life-threatening complications. Much of that time he was hospitalized. He
was told repeatedly that his chances for survival were minimal and, with his
third recurrence, that his death was likely imminent. After his treatment
was completed, he began to live, tentatively, in three- to six-month blocks,
uncertain of his future. Yet he now stood in front of us, after having
accomplished an amazing list of feats, humbly telling us about his life as a
patient, something he rarely talked about.
This patient, whom I will call Michael, was eloquent and spoke with a sense
of humor, recalling his stories so clearly and with such deep emotion that,
at times, it was almost too painful to listen. Sometimes the inadequacy of
words was replaced with his silence and tears. In those moments, even though
we were strangers, he gave us the opportunity to feel the periphery of his
suffering and to try to understand the depth of his experiences. He spoke
about those moments that made a difference to him during that time. I was
moved by his honesty, and although ironically he never used the word
compassion in his talk, it's the essence of what he spoke about. After his
talk, I felt compelled to write about compassion, not because I have
anything profound to say or a markedly new perspective. It's simply that I
think it's easy to forget about the power of compassion when we are focused
so often on the power of science.
Michael's stories reminded me that compassion is as important as competency
and trust, in a truly meaningful interaction between patient and physician.
Years later, this patient remained obviously touched by moments of
compassion that enveloped him with a comfort from knowing that others wanted
to alleviate some of his sufferingeven if at that particular moment they
could not completely understand it. Compassion has been defined as
"benevolence, commiseration, empathy, humanness, and kindness." However, I
think that author Joseph Campbell's description of compassion as "suffering
with" is most meaningful. 1
<http://jama.ama-assn.org/issues/v286n24/ffull/#rc1r1>  It is "suffering
with" patients for a few seconds or minutes that can create a special bond.
Michael recalled an intern who often took a "few extra minutes" at the end
of the day to talk with him about different topics, usually not related to
his illness. At other times, this intern would return after rounds to
explain some medical terminology. After finishing his last cycle of
chemotherapy, Michael did not have much communication with this intern
anymore. Yet, many years later, with tears in his eyes, he remains
overwhelmed with gratitude for the compassion shown to him by this young
physician. In retrospect, though, he felt that he never adequately expressed
his thanks to that intern.
It is difficult to dissect what happens in those "few extra minutes" that
can make such a difference for a patient. Michael poignantly remembered,
"After a while, you think of yourself as a chart rather than a person. Those
'extra moments' made me forget I was a patient. I felt like a person again."
What happens in those minutes for the physician? I can't speak for the
intern, but I do recall some of my own experiences. During my medical
training, I sat one night next to my patient, five years younger than I,
whose body was ravaged by melanoma. Yet her spirit was indomitable. It was
the Christmas season and she told me that was her favorite time of year. She
said, "A year ago I was so happy and now it's Christmas againand I'm dying."
I could barely keep the tears from rolling down my face. I felt such sadness
and such disillusionmentall I could really do to help her at that moment was
to hold her hand. In some of those "extra moments" spent with patients I've
heard about unfulfilled dreams, fears, and relationships. Sometimes I forget
how much I've learned about life from these people. Perhaps the essence of
those "extra minutes" is that by "suffering with" the patient, the
patient-physician relationship is temporarily suspended and transcends to
one of human being to human being.
Michael described our medical training as a sort of boot camp where one can
become desensitized to feeling. He understood how this could happen, yet he
was so grateful when someone remained "sensitive" to his suffering. Michael
provided an unmistakable affirmation that compassion does not require
lengthy periods of time and that it can have a profoundly positive, lasting
impression, an impression the physician may never realize. At one point he
remarked that "patients aren't looking for a best friend in their physician,
but any little extra kindness means so much."
Michael's stories reminded me that the facial expressions, mannerisms, and
words of physicians can convey compassion as well as have hidden meaning for
the patient. Nuances that would normally be considered inconsequential
become unusually significant. Michael recalled an instance when in the
middle of the night two interns told him of his need for emergency surgery
and that his chances for survival were minimal. As he recounted this
experience years later, he specifically noted that these interns had tears
in their eyes. On some level, their compassion and their sadness about his
situation made an impact on him. He also recalled his familiarity with the
gait of the attending physician as he walked down the hall, so that when it
changed from a fairly fast clip to a slower one, Michael felt this
"foreshadowed" bad news, and he was right. When the physician spoke to his
family outside his room in whispers, this also fueled feelings of anxiety
and fear. At one point he expanded on the words used to describe the size of
a tumor in his lung. One physician characterized it as the size of a quarter
and another as the size of a half dollar. This prompted Michael to spend an
inordinate amount of time measuring the size of these coins in an attempt to
determine the meaning behind these different descriptions.
Michael's emphasis on the meaning of words and mannerisms was jarring, since
these are often not a particular focus of physicians. During a busy day,
these specific elements of communication have not always received my
attention, and yet they can leave a lasting impression on a patient. I felt
a certain sense of comfort knowing that Michael did not interpret the tears
shed by the interns as a sign of weakness. On the contrary, he viewed it as
a sign of their compassion and humanness and felt that it did not detract
from their ability as physicians. I have cried for patients in private, yet
on occasion, when the sadness is overwhelming, I've shed tears with a
patient or with family members. Although it always seemed right at the
moment, in retrospect I've wondered how it was perceived.
Michael's stories reminded me that despite their own anguish, patients can
also offer compassion to others. Author Jean-Dominique Bauby poignantly
described patients as "those castaways on the shores of loneliness." 2
<http://jama.ama-assn.org/issues/v286n24/ffull/#rc1r2>  Physicians are often
aware of the despair that accompanies illness, yet do not always understand
what this really means for the patient. During the millions of moments of
loneliness when Michael was tired of fighting, lying in his bed, short of
breath, on oxygen, aware that his chance of survival was minimal, he told of
searching for reasons to continue his difficult struggle for life. He
thought very hard about finding the ultimate purpose for his lifesomething
that he could dream about and hold on to. However, while he was focusing on
these issues, other patients would sometimes turn to him for comfort.
Michael recalled one patient who became his friend. They would discuss their
lives, their illnesses, their hopes for the future. This patient often
visited him, hoping for a chance to talk. Sometimes Michael would respond
and other times he didn't feel like talking. The other patient would leave,
trying to hide his disappointment. One day Michael returned for treatment
and learned that his friend had died suddenly and unexpectedly. Michael's
regret over missing several opportunities to be compassionate toward this
other patient was apparent in his voice. It made me think of the many
similar opportunities that I had also missed.
Michael's insights reminded me that we are all a heartbeat away from our own
"unexpected" death. Michael said that eventually he accepted death and
learned to "embrace" it as part of life, but it wasn't easy. He recalled an
episode as a boxer, when in the heat of the moment after a fight, he hugged
his opponent and told him, "Wow. Wasn't that something." Now he uses the
intensity of that experience to describe his views about death. He said that
he will be sad when death comes for the final round, but will greet it like
an old friend, look back on his life, and say, "Wow. Wasn't that something."
Although Michael didn't discuss it, I wonder whether his or anyone's true
acceptance of mortality and subsequent passion for life involves an element
of compassion for oneself. Perhaps we need to empathize with our own fears
or, in other words, "suffer with" ourselves every once in a while, to really
appreciate this temporary stateof lifethat we find ourselves in.
Michael's stories and thoughts reminded me that compassion is an integral
part of medicine. The power of compassion is subtle. It may never be
acknowledged by the recipient. It may never be rewarded by a promotion or
public recognition. Sometimes it comes across in a few words or a smile or a
kind glance or a few extra minutes of time. Yet its effect can last a
lifetime. Compassion is intertwined with the science of medicine in that the
ultimate purpose of both is alleviation of suffering. Yet it's accomplished
in different ways. Science is measured but compassion is felt. The
opportunity for compassion presents itself every day in every outpatient
clinic, in every patient room, and in every hospital hallway. Many of these
opportunities may be lost because the value of compassion is not always
recognized.
Yet Michael reminded me that compassion is of valuethat it is a powerful
element of the patient-physician interaction. Without it something is
missing. Perhaps it is because compassion brings us to the core of our
humanity. Michael inspired me to reexamine my responsibilities as a
physician and as a human being. He taught me because I listened.
I need to listen more often.




AUTHOR INFORMATION
JOC80004

Teresa Gilewski, MD
New York, NY

Acknowledgment: I gratefully acknowledge several colleagues, especially
Joseph Simone, MD, for their helpful critiques of this essay. I am most
grateful to the patient in this article, for allowing me to tell part of his
story. His extraordinary honesty and courage provided us with a unique
opportunity to better understand the value of compassion in medicine. On
behalf of those who were privileged to listen to him, I offer our deep
admiration and appreciation.



REFERENCES




1. <http://jama.ama-assn.org/issues/v286n24/ffull/#rrc1r1>  Campbell J,
Moyers B. The Power of Myth. New York, NY: Bantam Doubleday Dell Publishing
Group; 1988:201.

2. <http://jama.ama-assn.org/issues/v286n24/ffull/#rrc1r2>  Bauby J. The
Diving Bell and the Butterfly. New York, NY: Vintage Books, Random House
Inc; 1997:29.




Edward E. Rylander, M.D.
Diplomat American Board of Family Practice.
Diplomat American Board of Palliative Medicine.



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