A Life in Medicine

by Robert Coles

  But safe refuge from uncertainty is not our destination. Patients understand this when the tests and technology multiply, but no advantage is gained either for the instrumental value of organic function or for its intrinsic value. The physiologic knowledge gained may simply have no use. Physicians understand this when they lament what they have done to patients in “the unit,” but they do not know what else to do. Of course, the rational science of the organism may seem enough when it is sufficient to restore organic function. I do not wish to minimize the very real value of this aspect of modern medicine. But when this rational science falls short, the refuge it provides offers cold comfort.

  How should we respond to this seduction by physiology? One response would be to denigrate the role of the basic sciences in medicine. Few within medicine or society would welcome such a direction. Rational science has produced extraordinary benefits, and the yield from medical science is only beginning. The detailed analysis of the human genome, as well as the DNA of other life forms, is only one example of pursuits that will transform medicine, presumably for our benefit. It is not knowledge per se that should be suspect.

  A second response to the power of physiology could be the further subspecialization of medicine. Those intellectually oriented toward the rational science of the organism could be encouraged to focus on these skills at the exclusion of others. Those more adept at developing relationships with patients and weighing the uncertainties of human values could be encouraged to foster these skills. With appropriate collaboration, perhaps the team approach to illness will serve all a patient’s needs. To a significant extent, this is the developing nature of medical care in U.S. teaching hospitals. Intensivists, consultants, and house staff often thrive on the technical analysis and control of physiology. To attend to the other aspects of patient welfare, nurses, chaplains, social workers, and—occasionally—medical ethicists are functioning like additional consultants.

  But subspecialization is doomed to failure from the patient’s perspective. Patients certainly want physicians to be technically knowledgeable and adept, but this is not all they want.4 Patients want someone to care for them and someone to trust and confide in, and they want this most when the rational science of the organism offers the least. These two desires for competence and care cannot be compartmentalized and attended to by teams. Similarly, the physician who only enjoys the thrill of technical analysis and control will never be satisfied in routine clinical practice. There are simply not enough technical challenges, and the human demands of patients will soon overwhelm those with little interest in this fundamental aspect of medicine. The wealth of technical thrills evaporates after residency for those who are not subspecialists.

  Perhaps a better approach is to embrace complexity and uncertainty. Physiology and the rational science of the organism must be aggressively pursued, but it is crucial that science be placed in a broader perspective for physicians in training.5 Competency in the basic sciences provides the tools for care, but it cannot be synonymous with care. Months of biochemistry, histology, and microbiology in the medical school curriculum are clearly excessive and beyond the needs of the vast majority of physicians. In addition, this concentration on scientific disciplines gives a false impression of the capabilities necessary for clinical competence. Those who wish to pursue basic science in greater detail should have the opportunity to do so, but this flood of information should not be foisted on all students with the assumption that it will contribute significantly to patient care.

  The marginal value of detailed (and fleeting) knowledge of the basic sciences does not justify the cost—the lack of time to study the nature of illness (not disease) in all its diversity. An understanding of the history and the philosophy of medicine is essential to placing our work in proper perspective, as is the study of the differing cultural, ethnic, and religious views of illness and disease. Medical schools need to address basic questions: What are the goals of medicine? What are the legitimate powers of the physician in the relationship with patients, and in the promotion of social welfare? Legal issues relevant to medicine must be presented in the curriculum, and medical schools should introduce the newer disciplines of medical anthropology, risk analysis, decision theory, and health-care economics. The goal of a basic medical education must be to understand organic dysfunction in its physical, personal, and social context. This does not constitute a denigration of the traditional science curriculum, only the attempt to place it in balance with the other skills necessary for adequate patient care.

  Would such a curriculum change the nature of medicine practiced by its students? Should we make physiology less seductive, or should we seek students more immune to seduction? With some notable exceptions,6 we have been tinkering around the edges of medical education with efforts in both of these directions attempting to squeeze a few hours of “bioethics” into the curriculum and by marketing medicine to more students with majors in literature, music, and philosophy. This is progress to be sure, but incremental progress, the results of which will be impossible to measure. Bolder experiments are necessary in order to promote fundamental changes in the nature of medical education....

  Integral to this broader study of medicine is the recognition of uncertainty—the uncertainty of medical knowledge, the uncertainty of personal limitations, and the uncertainty of human values.7 The resolution of these uncertainties is not imminent, so they must be recognized and embraced as reality and as a fundamental component of our work. Uncertainty must remain an intellectual irritant if medicine is to progress. It is the flight from uncertainty to false idols—the rational science of the organism—that risks the integrity of our profession and our true value as physicians.

  NOTES

  1 R. Fox, “Training for Uncertainty,” in The Student Physician, ed. R. Merton, G. Reader, and P. Kendall (Cambridge, MA: Harvard University Press, 1957), 207–41.

  2 J. Katz, The Silent World of Doctor and Patient (New York: Free Press, 1984), 165–206.

  3 N. Daniels, Just Health Care (New York: Cambridge University Press, 1985), 32–35.

  4 R. E. Murphy, “First Day,” Journal of the American Medical Association 261 (1989): 1509.

  5 D. C. Tosteson, “New Pathways in General Medical Education,” New England Journal of Medicine 322 (1990): 234–38; D. Bok, “Needed: A New Way to Train Doctors,” Harvard Magazine (May–June 1984): 32–43; S. H. Miles, L. W. Lane, J. Bickel et al., “Medical Ethics Education: Coming of Age,” Academic Medicine 64 (1989): 705–14; E. Pelligrino, “Educating the Humanist Physician: An Ancient Ideal Reconsidered,” Journal of the American Medical Association 227 (1974): 1288–94.

  6 Bok, “Needed”; E. G. Dimond, “The UMKC Medical Education Experiment: An Alternative Pathway to Physicianhood,” Journal of the American Medical Association 260 (1988): 956–58.

  7 L. Thomas, Late Night Thoughts on Listening to Mahler’s Ninth Symphony (New York: Bantam Books, 1984), 143–55.

  Lorrie Moore

  from PEOPLE LIKE THAT ARE THE ONLY PEOPLE HERE: CANONICAL BABBLING IN PEED ONK

  In this brief, powerful scene, a mother whose baby has been diagnosed with cancer struggles to comprehend the disease’s implications as she visits the Pediatric Oncology (“Peed Onk”) ward for the first time. The scene illuminates what people undergo in trying to become knowledgeable about incomprehensible, catastrophic illness when it affects a child.

  LORRIE MOORE is a professor of English at the University of Wisconsin, Madison. Her work has appeared in the New Yorker, the Paris Review, the New York Times, and Harper’s. She is the author of Self-Help, Anagrams, Like Life, and Who Will Run the Frog Hospital? This story is from a collection of short stories titled Birds of America.

  Take Notes. In the end, you suffer alone. But at the beginning you suffer with a whole lot of others. When your child has cancer, you are instantly whisked away to another planet: one of bald-headed little boys. Pediatric Oncology. Peed Onk. You wash your hands for thirty seconds in antibacterial soap b
efore you are allowed to enter through the swinging doors. You put paper slippers on your shoes. You keep your voice down. A whole place has been designed and decorated for your nightmare. Here is where your nightmare will occur. We’ve got a room all ready for you. We have cots. We have refrigerators. “The children are almost entirely boys,” says one of the nurses. “No one knows why. It’s been documented, but a lot of people out there still don’t realize it.” The little boys are all from sweet-sounding places—Janesville and Appleton—little heartland towns with giant landfills, agricultural runoff, paper factories, Joe McCarthy’s grave (alone a site of great toxicity, thinks the Mother. The soil should be tested).

  All the bald little boys look like brothers. They wheel their IVs up and down the single corridor of Peed Onk. Some of the lively ones, feeling good for a day, ride the lower bars of the IV while their large, cheerful mothers whiz them along the halls. Wheee!

  Theodore Deppe

  ADMISSION, CHILDREN’S UNIT

  Faced with the disturbing task of admitting into the children’s unit a boy whose back has been repeatedly and intentionally burned with a lit cigarette, a nurse contemplates the legend of Saint Lawrence teaching his disciples to recognize “the smell of sin.” This poem cautions us about having “sufficient knowledge” to glean a moral diagnosis as well as a medical one—in this case, about a way of life.

  THEODORE DEPPE works on a psychiatric unit for children; he is also a creative writing teacher in a high school for the arts and the author of Children of the Air. His work has appeared in Crazyhorse, the Kenyon Review, and other publications. Deppe received an NEA Fellowship in poetry and a poetry grant from the Connecticut Commission on the Arts.

  Later, I’d look up the story a friend told me years ago,

  how St. Lawrence taught his disciples to recognize the smell

  of sin, how they’d set off in pairs through the Roman Empire,

  separating good from evil, hoping to speed the Lord’s return.

  It must have been this scrap of legend, half-remembered,

  that moved in me last week when I stopped suddenly and,

  trying nor to stare at the woman, drew my breath in and smelled

  her, catching a scent that was there and then not there.

  She was telling me how her son set fire to his own room,

  how she’d found him fanning the flames with a pile of comics,

  and what could she do with such a child? Her hair

  was pulled back in a ponytail, her face shining and suffering,

  and what she had done, it turns out, was hold her son down

  so her boyfriend could burn him with cigarettes.

  The details didn’t, of course, come out at first, but I sensed them.

  The boy’s refusal to take off his shirt. His letting me, finally, lift

  it to his shoulders, examine the six wounds arranged in a cross,

  raised, ashy, second or third degree, I don’t know which.

  Silence in the room, and then the mother blaming

  the boyfriend, blaming the boy himself.

  I kept talking to her in a calming voice, straining for something

  I thought I smelled beneath her cheap perfume—a scent

  maddening, of course, because nameless, little top note

  of thrill followed by something—how can I describe this?

  a bass note after, or under, the other smells, as if something

  not physical had begun to rot.

  I’d like to say all this happened when I first started

  to work as a nurse, before I’d learned not to judge the parents,

  but this was last week, the mother was crying,

  I thought of handing her a box of tissues, and didn’t.

  When the Romans crucified Lawrence, according to the story

  even the church won’t stand behind anymore, he asked Jesus

  to forgive him for judging others when his own sin was so large.

  He wept on the cross because he smelled his own soul

  and knew he was lost. Only when the soldiers lifted him down

  did they find rose petals, clutched in his fists,

  a new species exuding a fragrance never before smelled on earth.

  The boy got up, sullen, wordless, brought his mother

  Kleenex from my desk, pressed his head into her side.

  Bunched the bottom of her sweatshirt in both hands

  as if anchoring himself to her. Glared at me.

  It took four of us to pry the boy from his mother’s arms.

  Terry Tempest Williams

  THE VILLAGE WATCHMAN

  As she tells the story of her institutionalized Uncle Alan, Terry Tempest Williams reflects on being knowledgeable about the multidimensional nature of a word often used in medicine: “normal.” Alan’s surprising answer to Williams’s question, “What is it really like to be inside your body?” highlights the revelatory power of engagement.

  TERRY TEMPEST WILLIAMS writes about the natural landscape and her Mormon faith. She is the author of An Unspoken Hunger, from which this essay is taken; Refuge, the story of her mother’s battle with ovarian cancer; and, most recently, Leap. The recipient of a Lannan Literary Fellowship and a Guggenheim Fellowship, she lives with her husband, Brooke Williams, in Grand County, Utah.

  Stories carved in cedar rise from the deep woods of Sitka. These totem poles are foreign to me, this vertical lineage of clans; Eagle, Raven, Wolf, and Salmon. The Tlingit craftsmen create a genealogy of the earth, a reminder of mentors, that we come into this world in need of proper instruction. I sit on the soft floor of this Alaskan forest and feel the presence of Other.

  The totem before me is called “Wolf Pole” by locals. The Village Watchman sits on top of Wolf’s head with his knees drawn to his chest, his hands holding them tight against his body. He wears a red-and-black-striped hat. His eyes are direct, deep-set, painted blue. The expression on his face reminds me of a man I loved, a man who was born into this world feet first.

  “Breech—” my mother told me of her brother’s birth. “Alan was born feet first. As a result, his brain was denied oxygen. He is special.”

  As a child, this information impressed me. I remember thinking fish live underwater. Maybe Alan had gills, maybe he didn’t need a face-first gulp of air like the rest of us. His sweet breath of initiation came in time, slowly moving up through the soles of his tiny webbed feet. The amniotic sea he had floated in for nine months delivered him with a fluid memory. He knew something. Other.

  Wolf, who resides in the center of this totem, holds the tail of Salmon with his feet. The tongue of Wolf hangs down, blood-red, as do his front paws, black. Salmon, a sockeye, is poised downriver—a swish of a tail and he could be gone, but the clasp of Wolf is strong.

  There is a story of a boy who was kidnapped from his village by the Salmon People. He was taken from his family to learn the ways of water. When he returned many years later to his home, he was recognized by his own as a Holy Man privy to the mysteries of the unseen world. Twenty years after my uncle’s death, I wonder if Alan could have been that boy.

  But our culture tells a different story, more alien than those of Tlingit or Haida. My culture calls people of sole-births retarded, handicapped, mentally disabled or challenged. We see them for who they are not, rather than for who they are.

  My grandmother, Lettie Romney Dixon, wrote in her journal, “It wasn’t until Alan was sixteen months old that a busy doctor cruelly broke the news to us. Others may have suspected our son’s limitations, but to those of us who loved him so unquestionably, lightning struck without warning. I hugged my sorrow to myself. I felt abandoned and lost. I wouldn’t accept the verdict. Then we started the trips to a multitude of doctors. Most of them were kind and explained that our child was like a car without brakes, like an electric wire without insulation. They gave us no hope for a normal life.”

  Normal. Latin: normalis; norma, a rule; conforming with or constituting an ac
cepted standard, model, or pattern, especially corresponding to the median or average of a large group in type, appearance, achievement, function, or development.

  Alan was not normal. He was unique; one and only; single; sole; unusual; extraordinary; rare. His emotions were not measured, his curiosity not bridled. In a sense, he was wild like a mustang in the desert and, like most wild horses, he was eventually rounded up.

  He was unpredictable. He created his own rules, and they changed from moment to moment. Alan was twelve years old, hyperactive, mischievous, easily frustrated, and unable to learn in traditional ways. The situation was intensified by his seizures. Suddenly, without warning, he would stiffen like a rake, fall forward and crash to the ground, hitting his head. My grandparents could not keep him home any longer. They needed professional guidance and help. In 1957 they reluctantly placed their youngest child in an institution for handicapped children called the American Fork Training School. My grandmother’s heart broke for the second time.

  Once again, from her journal: “Many a night my pillow is wet from tears of sorrow and senseless dreamings of ‘if things had only been different,’ or wondering if he is tucked in snug and warm, if he is well and happy, if the wind still bothers him. . . .”

  The wind may have continued to bother Alan, certainly the conditions he was living under were less than ideal, but as a family there was much about his private life we never knew. What we did know was that Alan had an enormous capacity for adaptation. We had no choice but to follow him.