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The technological revolution of the past 30 years has made medical cures far more available than at any other time in history. Antibiotics have made previously fatal diseases, such as pneumonia and tuberculosis, routinely treatable. Highly sophisticated medical imaging renders the source of disease more easily identifiable, allowing physicians to apply timely pharmacologic and surgical therapies. Yet even as medicine cures more people, patients express growing dissatisfaction with the medical profession. Indeed, as Anne Fadiman and Dr. Bernard Lown assert, perhaps this very ability to cure creates the impersonal atmosphere in modern medicine. Doctors, bent on treating a disease, lose sight of the perapply timely pharmacologic and surgical therapies. Yet even as medicine cures more people, patients express growing dissatisfaction with the medical profession. Indeed, as Anne Fadiman and Dr. Bernard Lown assert, perhaps this very ability to cure creates the impersonal atmosphere in modern medicine. Doctors, bent on treating a disease, lose sight of the person in whom it rages.
In The Spirit Catches You and You Fall Down, Fadiman, a journalist and essayist who now edits The American Scholar, details the clash between a Hmong family and the American medical establishment in the struggle to treat a child with severe epilepsy. In 1980, Lia Lee's family emigrated to California from Laos via the refugee camps in Thailand. In their homeland, the Hmong were an isolated people who survived as subsistence farmers in the mountains, where they sustained a complex community and culture without the foundation of a written language.
Fadiman's expertly detailed and carefully worked book explores what happens to this community when confronted with America--in particular, with modern American medicine. Describing what brought her to probe this collision, Fadiman writes, "I have always felt that the action most worth watching is not at the center of things but where edges meet. I like shorelines, weather fronts, international borders. There are interesting frictions and incongruities in these places, and often, if you stand at the point of tangency, you can see both sides better than if you were in the middle of either one. This is especially true, I think, when the apposition is cultural."
What ensues is a devastating conflict between the Lees and the attending pediatricians at Merced Community Medical Center over the treatment of Lia's seizure disorder. Fadiman presents the situation meticulously: she spent years poring over every page of Lia's medical record and discussed each event with the medical caregivers as well as with Lia's parents.
The Lees, observing their daughter's shaking and twitching episodes, believed that a dab, a wicked spirit, had snatched her soul. (The title of the book is a literal translation of the Hmong term for epilepsy, quag dab peg). In Hmong culture, epilepsy is auspicious--it bestows on the sufferer entry into the realm of the spiritual world. Still, the Lees were concerned about Lia's behavior and decided to use American medicine, about which they had learned in the refugee camps, in addition to their own traditional healing methods to secure her spirit firmly in her body.
Achieving understanding between the American physicians and the Lees involved much more than overcoming the language barrier. The culture shock facing Hmong arriving in the United States is tremendous. "The customs they were expected to follow seemed so peculiar, the rules and regulations so numerous, the language so hard to learn, and the emphasis on literacy...so strong that many Hmong were overwhelmed," Fadiman writes. "Some newcomers wore pajamas as street clothes; poured water on electric stoves to extinguish them;...and hunted pigeons with crossbows in the streets of Philadelphia."
A medical resident told Fadiman, "The Hmong simply didn't have the same concepts as I did....Most of them had no concept that the organs they saw in animals were the same as in humans....They knew there was a heart, because they could feel the heartbeat, but beyond that--well, even lungs were kind of a difficult thing to get into. How would you intuit the existence of lungs if you had never seen them?"
Because Lia was often already seizing when she was brought into the hospital, time posed another barrier to achieving understanding. One resident said, "The parents seemed frightened, not terribly frightened though, not as frightened as I would have been if it was my kid....I remember feeling very anxious because they had a real sick kid and I felt a big need to explain to these people, through their relative who was a not-very-good translator, what was going on, but I felt like I had no time, because we had to put an IV in her scalp with Valium to stop the seizures, but then Lia started seizing again...."
Ultimately, the cultural divide proved too broad to bridge as the Lees and Lia's pediatricians engaged in a bitter battle over the appropriate treatment and management of her epilepsy. Although the Lees accepted the help of American medicines, they also believed the pills were responsible for making Lia sick. Unable to read or properly understand the directions on the bottles, they administered medications improperly, thereby preventing Lia's American caregivers from gaining control of her seizures, and increasing her risk of brain damage. Many years into the Lees' fight with the American medical system, a public-health nurse visited their home to check on Lia's progress. While there, he noticed ceremonial amulets on Lia's wrists and asked the Lees, through an interpreter, how their religion viewed Lia's illness. But the Lees, worn out by an often acrimonious battle, chose not to answer. Writes Fadiman, a witness to the visit, "It was as if, by a process of reverse alchemy, each party in this doomed relationship had managed to convert the other's gold into dross."
The patients' rights movement that began in the 1980s has heightened awareness within the medical community that values are not absolute. The New Pathway curriculum I have followed at Harvard Medical School, for example, has attempted to teach us both cultural sensitivity and techniques for dealing with the inevitable clashes. Hospitals have developed sophisticated procedures to mediate these complicated ethical situations. But as a medical student who has shared medical responsibility for patients' lives, I have found it excruciating to watch patients make poor choices, particularly when I believe they are not making educated decisions. This conflict is particularly raw with children, who cannot make their own choices. Doctors, steeped in the Western ideal of the supremacy of the individual, are trained to preserve life so that children can grow up and decide on their own values. This may set up a conflict with the parents. Even under the best of circumstances, resolving these conflicts is stormy and painful.
Although Fadiman tells us she set out to present an unbiased account of Lia's story, she became a close friend of the Lees and obviously identifies with their perspective. We read of her attendance at many of their rituals and celebrations, of countless evenings in their home. And though she carefully interviewed each physician involved in Lia's care, she does not explore the medical culture with the same zeal. She never spends a day with the doctors, nor does she follow them while on-call. She never gains a sense of what it is like to hold medical responsibility for someone's life. Perhaps as a result, Fadiman can be quick to judge the physicians as insensitive. Compared to her rich, compelling insights into the Hmong, her assessments of medical culture sometimes feel stereotyped.
Despite this flaw, The Spirit Catches You and You Fall Down is a captivating account of the clash between the Lees and the American medical establishment. Provocative and exceptionally well told, the book is enlightening and important for both lay and medical people.
In The Lost Art of Healing, written from within the medical profession, professor of cardiology emeritus Bernard Lown castigates modern medicine for its emphasis on tests and technology at the expense of caring. Drawing on his own discipline, Lown describes how the advent of invasive testing to demonstrate cardiac pathology has made physicians less dependent on careful histories taken from conversations with patients--and too pressed for time to take them.
By implication, he indicts much of the rest of contemporary doctoring. He asserts that financial greed has corrupted much modern hospital medicine, resulting in excessive testing to reach diagnoses. He asserts that this system has led to increased patient dissatisfaction because medical practice ignores patients' humanity: "It seems to me that medicine has indulged in a Faustian bargain. A three-thousand-year tradition, which bonded doctor and patient in a special affinity of trust, is being traded for a new type of relationship. Healing is replaced with treating, caring is supplanted by managing, and the art of listening is taken over by technological procedures. Doctors no longer minister to a distinctive person but concern themselves with fragmented, malfunctioning biologic parts. The distressed human being is frequently absent from the transaction." (Lown is quick to add, however, that technology remains essential to treating cardiac disease effectively when used appropriately.)
Early in his book Lown establishes the importance of listening to the patient. He laments that modern medicine has lost the mind-body connection (the point that Fadiman so poignantly explores). Lown writes, "Until the late nineteenth century, the mind was regarded as inseparable from the body, but as science gained dominance, dualism began to pervade medical thinking. The mind was sundered from the body and seemed a thing apart, a spiritual rather than a scientific entity."
Through engaging patient vignettes, he emphasizes the importance of listening and of appreciating the significance of psychological factors in illness, particularly in his area of interest, sudden cardiac arrest. Lown also demonstrates the weight a doctor's words can carry by relating how a young woman with severe but medically well-controlled heart valve disease misunderstood her physician's words. The latter used the abbreviation "TS" (short for tricuspid stenosis, her particular form of valvular disease) in describing her condition to his colleagues. "[The patient] began to cry quietly," Lown writes, "as though bereft of any hope." When he asked her what she thought "TS" meant, she replied, "It means terminal situation." Although Lown reassured her that her condition was, in fact, stable, she immediately went into congestive heart failure from the valvular disease--and died.
Even during my short tenure in the medical community, I have come to appreciate the power of words. We devoted a full course in our first year of medical school to learning how to speak with and listen to our patients. We learned to see our patients as people before we were expected to develop a diagnosis and treatment plan. As a medical student, I have the luxury of time: I care for between one and four patients and can spend as long as I like with them, while the medical residents are compelled to see 10 patients in an afternoon. While reading Lown's book, I tried to look from his perspective when I interviewed my patients, to find the clinical clues he would have picked up, to hear the unspoken story he would have elicited. I looked more critically at the labs and tests we had ordered to see if they were all essential.
After demonstrating the importance of communication, Lown moves into a review of technological and pharmacological advances in cardiology. He continues to write from personal experience: he had a hand in many of the seminal discoveries of cardiology. He developed the cardiac defibrillator that jolts hearts out of irregular and malignant rhythms. He also conducted some of the most significant experiments with digitalis, the wonder-drug of cardiology that helps weak hearts pump more efficiently and helps make heartbeats more regular. Unfortunately, this section rapidly deteriorates into a curriculum vitae. The stories of each discovery are long and medically detailed. The technical language may be difficult for lay readers.
The book's final section reveals Lown's experience with dying patients. He continues to emphasize the idea that hospital medicine is too technological, that it fails to bring compassionate care to the dying. "The pornography of death derives largely from an amalgam of five factors," he writes: "a technology that makes it possible to prolong life almost indefinitely, a medical profession that has declared war against death, a hospital that has a vested interest in extending the usually futile battle, a patient who is ignorant of his or her rights and conditioned to suffer, and a public that has been led to expect only victory from the medical profession."
Lown has lived through and led many transformations in medicine over the last 50 years. But I think he offers an overly bleak view. He rails against medicine that ill serves dying patients because it is "based on reimbursement rather than on what is best for the individual patient." I prefer to believe people have their lives extended because of ambivalence--on the part of physicians, family members, and even the patients themselves--over when to let go. During my medical-school training, for the most part, I have seen good people doing their best in an imperfect system. I have yet to see anyone order an invasive test solely, or even in part, because the hospital will profit. On the contrary, in the world of managed care, there seems to be more concern to whittle down the tests and procedures to encompass only the most essential and productive.
My greater concern is that many lay readers may be put off by Lown's immodesty. The clinical vignettes that carry the book nearly all tell of patients who have been to countless other physicians who failed to listen carefully. Lown, of course, listens compassionately and intently, diagnoses the problem, and cures the tremendously grateful patient. Clearly Lown does not bring his consummate self-confidence, bordering on arrogance, into his interactions with patients, but for the reader, it can be frustrating. Yet The Lost Art of Healing remains an illuminating book for clinicians, and a challenging but compelling book for laypeople.
At a time when most public discussion of American medicine revolves around miracle drugs, technological leaps, and--above all--who pays the bills, we especially need journalists like Anne Fadiman and physicians like Bernard Lown to keep us focused on the central issues of health and care.