Just the Facts
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《新英格兰医药杂志》
A patient of mine died recently, and as I dutifully filled out his death certificate beneath a sputtering fluorescent light in my hospital's admitting office, I wondered about the tales we tell in medicine and what purposes they serve. In the block print and black ink required by the form, I wrote "RESPIRATORY ARREST" and then "CHRONIC OBSTRUCTIVE PULMONARY DISEASE." As I signed it, I felt how woefully inadequate was the summary I had just provided. Yet there were no blanks on the standard legal document for explaining the patient's chronic pain or for describing his faded tattoos or recounting his penchant for New York–style cheesecake — and surely for good reason: the Commonwealth of Massachusetts was interested in him purely for statistical and demographic purposes. I slipped the form unceremoniously into the appropriate folder and headed for the exit. Whether I should attend his funeral and what to say to his longtime partner, also my patient, at his next visit were my problems.
I say "problems" because we in the medical profession seldom, if ever, give much thought to what lies beyond the clearly drawn boundaries of our clinical engagement with our patients. We toil under the daunting pressures of a model for medical care that has evolved rapidly from the idealized (albeit paternalistic) domain of the humane, silver-haired Marcus Welby, M.D., to that of the harried, jargon-spouting, sleep-deprived characters on "ER." The litany of what ails us is an all-too-familiar one: the time and financial constraints imposed by managed care, the burdens of keeping up with unbridled technological advancement, the frustrations of the complex psychosocial issues raised by increasingly multicultural, non-Anglophone patients. Who has the time, or the wherewithal, for sharing stories? We need the proper ICD-9 code for osteoarthritis — or should it be shoulder pain? — not the lengthy reminiscence of an elder's glory days as a minor-league pitcher.
At the same time, we also forget, as we race through our busy days, that we actively participate in the creation of our own particular narrative about illness. Indeed, we do more than merely participate: because we still hold significant authority in the eyes of our patients and society at large, we become the unwitting stars, the central figures in the great drama of human suffering. To some observers, such as the iconoclastic literary theorist Susan Sontag, such a dominant role in defining illness is welcome; at one time stricken with cancer herself, Sontag celebrates in her writing the power of science to curb the human imagination, source of so many ill-informed and damaging myths about illness, especially cancer and AIDS. She prefers the possibility of a wholly "objective" scientific understanding of diseases — one that has the potential to yield effective treatments that might cure them — to the stale superstitious beliefs that repressed anger causes heart disease or that a passive personality can lead to the speedier demise of a patient with cancer. Her endorsement of a someday-omniscient biomedicine, with steely-minded physicians as its emissaries to the afflicted, seems all the more compelling coming, as it does, from a humanist.
Yet something keeps pulling me back to the utter deficiency of that tight-lipped death certificate, in which a whole life was encapsulated in a few lines, in "causes of death" that revealed so little at a time when it seemed that so much more needed to be told. It was at such moments that another chronicler of medicine, the American poet William Carlos Williams, felt that he could begin to fathom the elusive essence of our humanity. Williams, who was also a general internist, practiced medicine at the beginning of the 20th century, at a time of tremendous promise, when it appeared that the realization of the dream of vanquishing human suffering might truly be near at hand, with the invention of such marvels as penicillin, anesthesia, and roentgenography. Though famous for jotting down the occasional line of poetry on his prescription pads, Williams apparently always strived to maintain a separation between his twin vocations; in fact, in the many hundreds of pages of his autobiography, he devotes only a few paragraphs to a deliberate side-by-side consideration of the two. His words, however, belie an apparent assumption that the connection between language and healing was self-evident and perhaps did not need to be made explicitly, even as technology was poised to make his way of doctoring obsolete:
When they ask me, as of late they so frequently do, how I have for so many years continued an equal interest in medicine and the poem, I reply that they amount for me to nearly the same thing. Any worth-his-salt physician knows no man is "cured." . . . The cured man, I want to say, is no different from any other. It is a trivial business unless you add the zest, whatever that is, to the picture. That's how I came to find writing such a necessity, to relieve me from such a dilemma. I found that by practice, by trial and error, that to treat a man as something to which surgery, drugs and hoodoo applied was an indifferent matter; to treat him as a work of art somehow made him come alive to me.1
So perhaps the boundary between comprehension and compassion, between our level-headed biomedical explication of our patients' diseases and their own intensely personal, often imaginatively colored, stories of their illnesses is an artificial one. Perhaps, for Williams, it was necessary to explore this charged borderland not so much to distinguish between the objective and the subjective, but to keep from being entirely subsumed in his patients' collective voice, the power and relevance of which were simply unquestionable.
Here at home, surrounded by the tabernacle of my books, the night sky filling with stars whose names I have not cared enough to study, I wonder what it would have been like to have shared more of myself with my recently deceased patient. Harold, as I'll call him, would always respond to my terse admonitions about his continued smoking with the promise of a private lesson in how to appreciate a good cigar; then he'd chuckle at what he considered the irony of having to educate a Cuban in such a fundamental epicurean matter. If our discussion turned to his elevated cholesterol level, he'd respond with a new recipe for cheesecake — one topped with cherries, another marbled with fudge, another he disdainfully considered "low-fat" that substituted Neufchatel ("if you can stand the stuff") for real Philadelphia-brand cream cheese, in endless variations on an atheroma-inducing theme. He wasn't at all embarrassed about discussing his sex life, and after congratulating me once for raising the issue so matter-of-factly, he proceeded to expound on some of the finer points of gay sexuality, punctuated by long draws on his albuterol inhaler — a lively discussion that culminated in a pseudo-demure request for a prescription for Viagra.
Often, behind the screens of my frequent typing on the computer keyboard and my beleaguered sense of self-importance, I had the uncanny sense that I was listening to an utterly familiar song being sung in a language I had once known but no longer recognized. I also remember the word "professionalism" flashing urgently through my mind. A new buzzword in medical-education circles, however undefined it might be, it seemed to come in very handy in fortifying the barrier between me and Harold. I suppose I feared that what was usually neatly contained in a few lines under the heading "Social History" would somehow spill across the entire medical record — while his pain, perhaps, with its flimsy diagnosis of "myofascial pain syndrome" scared me more than anything else. Sometimes I could hear him moaning softly in the waiting area as I finished up with the preceding patient; in the cramped space of the exam room, I felt its brute presence pushing against me as I gingerly skirted past the wheelchair and the large club-like cane that helped him get around. I would always conscientiously ask him to rate the severity of his pain, pointing to my chart with its abstract grimaces, smiley faces, and 1-to-10 scale. He would say, his wheezing almost always audible, that the pain couldn't possibly fit into my neat scheme of things. The gabapentin and oxycodone helped to blunt it, but what he really craved was human contact, release from the growing isolation into which the pain seemed to have banished him. Almost all his friends had abandoned him, he said, disappointed by his inability to keep up with their activities, weary of hearing about his slow, relentless deterioration.
Surely, I thought, no matter how lonely he was, it would be unprofessional for me to accept his invitation to come to his home for dinner some night. Inappropriate for me to accept his gift of Cohibas ("Don't ask me how I got them, OK?") or the 10-lb deluxe cherry cheesecake that arrived express-shipped from New York City during one holiday season. Beyond the call of duty, even as I charted his approaching death, to comfort him with an embrace, to share with him at least a story of my own.
Now, staring at a nameless star among so many through my window, I wonder what might have happened — what terrible intimacies we might have revealed, what awful words and unimaginable pains spoken and confronted, in what new ways we might have felt alive — had I only dared.
Source Information
(Identifying details about the patient have been changed to protect his privacy.)
From Beth Israel Deaconess Medical Center and Harvard Medical School, Boston.
References
Williams WC. The autobiography of William Carlos Williams. New York: New Directions, 1967.(Rafael Campo, M.D.)
I say "problems" because we in the medical profession seldom, if ever, give much thought to what lies beyond the clearly drawn boundaries of our clinical engagement with our patients. We toil under the daunting pressures of a model for medical care that has evolved rapidly from the idealized (albeit paternalistic) domain of the humane, silver-haired Marcus Welby, M.D., to that of the harried, jargon-spouting, sleep-deprived characters on "ER." The litany of what ails us is an all-too-familiar one: the time and financial constraints imposed by managed care, the burdens of keeping up with unbridled technological advancement, the frustrations of the complex psychosocial issues raised by increasingly multicultural, non-Anglophone patients. Who has the time, or the wherewithal, for sharing stories? We need the proper ICD-9 code for osteoarthritis — or should it be shoulder pain? — not the lengthy reminiscence of an elder's glory days as a minor-league pitcher.
At the same time, we also forget, as we race through our busy days, that we actively participate in the creation of our own particular narrative about illness. Indeed, we do more than merely participate: because we still hold significant authority in the eyes of our patients and society at large, we become the unwitting stars, the central figures in the great drama of human suffering. To some observers, such as the iconoclastic literary theorist Susan Sontag, such a dominant role in defining illness is welcome; at one time stricken with cancer herself, Sontag celebrates in her writing the power of science to curb the human imagination, source of so many ill-informed and damaging myths about illness, especially cancer and AIDS. She prefers the possibility of a wholly "objective" scientific understanding of diseases — one that has the potential to yield effective treatments that might cure them — to the stale superstitious beliefs that repressed anger causes heart disease or that a passive personality can lead to the speedier demise of a patient with cancer. Her endorsement of a someday-omniscient biomedicine, with steely-minded physicians as its emissaries to the afflicted, seems all the more compelling coming, as it does, from a humanist.
Yet something keeps pulling me back to the utter deficiency of that tight-lipped death certificate, in which a whole life was encapsulated in a few lines, in "causes of death" that revealed so little at a time when it seemed that so much more needed to be told. It was at such moments that another chronicler of medicine, the American poet William Carlos Williams, felt that he could begin to fathom the elusive essence of our humanity. Williams, who was also a general internist, practiced medicine at the beginning of the 20th century, at a time of tremendous promise, when it appeared that the realization of the dream of vanquishing human suffering might truly be near at hand, with the invention of such marvels as penicillin, anesthesia, and roentgenography. Though famous for jotting down the occasional line of poetry on his prescription pads, Williams apparently always strived to maintain a separation between his twin vocations; in fact, in the many hundreds of pages of his autobiography, he devotes only a few paragraphs to a deliberate side-by-side consideration of the two. His words, however, belie an apparent assumption that the connection between language and healing was self-evident and perhaps did not need to be made explicitly, even as technology was poised to make his way of doctoring obsolete:
When they ask me, as of late they so frequently do, how I have for so many years continued an equal interest in medicine and the poem, I reply that they amount for me to nearly the same thing. Any worth-his-salt physician knows no man is "cured." . . . The cured man, I want to say, is no different from any other. It is a trivial business unless you add the zest, whatever that is, to the picture. That's how I came to find writing such a necessity, to relieve me from such a dilemma. I found that by practice, by trial and error, that to treat a man as something to which surgery, drugs and hoodoo applied was an indifferent matter; to treat him as a work of art somehow made him come alive to me.1
So perhaps the boundary between comprehension and compassion, between our level-headed biomedical explication of our patients' diseases and their own intensely personal, often imaginatively colored, stories of their illnesses is an artificial one. Perhaps, for Williams, it was necessary to explore this charged borderland not so much to distinguish between the objective and the subjective, but to keep from being entirely subsumed in his patients' collective voice, the power and relevance of which were simply unquestionable.
Here at home, surrounded by the tabernacle of my books, the night sky filling with stars whose names I have not cared enough to study, I wonder what it would have been like to have shared more of myself with my recently deceased patient. Harold, as I'll call him, would always respond to my terse admonitions about his continued smoking with the promise of a private lesson in how to appreciate a good cigar; then he'd chuckle at what he considered the irony of having to educate a Cuban in such a fundamental epicurean matter. If our discussion turned to his elevated cholesterol level, he'd respond with a new recipe for cheesecake — one topped with cherries, another marbled with fudge, another he disdainfully considered "low-fat" that substituted Neufchatel ("if you can stand the stuff") for real Philadelphia-brand cream cheese, in endless variations on an atheroma-inducing theme. He wasn't at all embarrassed about discussing his sex life, and after congratulating me once for raising the issue so matter-of-factly, he proceeded to expound on some of the finer points of gay sexuality, punctuated by long draws on his albuterol inhaler — a lively discussion that culminated in a pseudo-demure request for a prescription for Viagra.
Often, behind the screens of my frequent typing on the computer keyboard and my beleaguered sense of self-importance, I had the uncanny sense that I was listening to an utterly familiar song being sung in a language I had once known but no longer recognized. I also remember the word "professionalism" flashing urgently through my mind. A new buzzword in medical-education circles, however undefined it might be, it seemed to come in very handy in fortifying the barrier between me and Harold. I suppose I feared that what was usually neatly contained in a few lines under the heading "Social History" would somehow spill across the entire medical record — while his pain, perhaps, with its flimsy diagnosis of "myofascial pain syndrome" scared me more than anything else. Sometimes I could hear him moaning softly in the waiting area as I finished up with the preceding patient; in the cramped space of the exam room, I felt its brute presence pushing against me as I gingerly skirted past the wheelchair and the large club-like cane that helped him get around. I would always conscientiously ask him to rate the severity of his pain, pointing to my chart with its abstract grimaces, smiley faces, and 1-to-10 scale. He would say, his wheezing almost always audible, that the pain couldn't possibly fit into my neat scheme of things. The gabapentin and oxycodone helped to blunt it, but what he really craved was human contact, release from the growing isolation into which the pain seemed to have banished him. Almost all his friends had abandoned him, he said, disappointed by his inability to keep up with their activities, weary of hearing about his slow, relentless deterioration.
Surely, I thought, no matter how lonely he was, it would be unprofessional for me to accept his invitation to come to his home for dinner some night. Inappropriate for me to accept his gift of Cohibas ("Don't ask me how I got them, OK?") or the 10-lb deluxe cherry cheesecake that arrived express-shipped from New York City during one holiday season. Beyond the call of duty, even as I charted his approaching death, to comfort him with an embrace, to share with him at least a story of my own.
Now, staring at a nameless star among so many through my window, I wonder what might have happened — what terrible intimacies we might have revealed, what awful words and unimaginable pains spoken and confronted, in what new ways we might have felt alive — had I only dared.
Source Information
(Identifying details about the patient have been changed to protect his privacy.)
From Beth Israel Deaconess Medical Center and Harvard Medical School, Boston.
References
Williams WC. The autobiography of William Carlos Williams. New York: New Directions, 1967.(Rafael Campo, M.D.)