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Harriet S.MeyerMD, Contributing EditorDavid H.MorseMS, Journal Review EditorRobertHoganMD, adviser for new media
In recent years essays and books by physicians about their own illnesses have appeared with increasing frequency, and at least one (The Doctor, 1991, based on A Taste of My Own Medicine, by Ed Rosenbaum) has found its way to the screen. A common theme among them has been that of self-discovery and the development of new empathy with patients. In One Hundred Days: My Unexpected Journey From Doctor to Patient, David Biro, in a popular metaphor of our day, has raised the bar—and raised it a considerable distance.
In the mid-1990s, Dr Biro, then 31 years old, had just completed his dermatology specialty training, was preparing to take the specialty board examinations, had just entered the dermatology practice of his father, and was also enjoying the excitement of a clinical teaching appointment at the Downstate Medical Center in Brooklyn. In the midst of this busy and satisfying life, with no antecedent history of trauma or illness of any kind, he suddenly experienced unilateral loss of vision. Within a day the visual loss was demonstrated to be secondary to a central retinal vein thrombosis. Initial laboratory studies showed a moderate pancytopenia, which led to a diagnosis of paroxysmal nocturnal hemoglobinuria. The establishment of that diagnosis, an uncommon but potentially life threatening illness, was not entirely smooth and first introduced the now-patient physician to the turmoil and conflicts of dealing with a serious illness, uncommon and of uncertain etiology.
Expert consultation about management was obtained and, perhaps inevitably, the patient was faced with conflicting opinions from equally esteemed physicians. Among the more illuminating passages in this well-written book are those describing Biro's torment when confronted with the choice between a possibly curative but dangerous therapy (allogeneic marrow transplantation) and more conservative management in which the illness, rather than the treatment, poses the larger threat. The author chose marrow transplantation. (The book's title refers to the anticipated hospitalization and isolation that was the practice at the institution where he received his care.) Although less firmly established at the time, this approach now is more in favor, particularly for patients whose presenting pathology is that of thrombotic disease.
The largest portion of the book deals with the enormously stressful experience of the patient undergoing allogeneic marrow transplantation. The blessing of loving family and supportive friends was diluted by the patient's own professional insights (not always correct) and the many professional friends, each of whom had their own view of his management. The author's experiences are portrayed with candor, honesty, and often poetic language. In fact, Biro had interrupted his medical school training to earn a doctoral degree in literature at Oxford, and his facility with language and metaphor are a pleasure.
Nowhere have I read a better popular depiction of a complex medical procedure. The importance to patient comfort of those who might otherwise be considered lesser players in this drama is generously described. The aide who transports the patient to radiation therapy, the "Rinser" who supplies mouth care when the buccal mucosa is breached by the chemotherapy, the nursing staff—all are openly and honestly depicted. The physicians' strengths (and failings), the patient's physical pain and emotional despair, the period of prolonged isolation are all faithfully and vividly rendered. Intrafamily tensions are shared and sensitively portrayed.
My only caveat is minor. Anyone who has been seriously ill understands the importance of believing that one's physicians and institutions providing care are fine professionals and excellent organizations. The narrative is sprinkled with references to the world renowned physicians and the superiority of the institutions at which the author sought and obtained care. Happily, similar care is available in many places throughout the nation and world, and experienced and scientific care is available from a number of physician-scientists similarly distributed. That said, the courage of the patient and his honesty and skill in describing the terrifying aspects of the illness and the treatment make this story instructive for both the lay and professional audience. The book, published some four years following the marrow transplantation, is testimony to the success of the treatment and a tribute to patient, family, and all the caregivers involved.
Doctor to Patient: One Hundred Days: My Unexpected Journey From Doctor to Patient. JAMA. 2000;284(16):2120–2121. doi:10.1001/jama.284.16.2120-JBK1025-4-1
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