| Features | Winter 2007 |
Girl, Interrupted Anne Dodge had lost count of all the doctors she had seen over the past 15 years. She guessed it was close to 30. Now, two days after Christmas Anne is in her thirties, with sandy brown hair and soft blue eyes. She grew up in a small town in Massachusetts, one of four sisters. Around age 20, she found that food did not agree with her. After a meal, she would feel as if a hand were gripping her stomach and twisting it. The nausea and pain were so intense that occasionally she vomited. Her family doctor could find nothing wrong. He gave her antacids. But the symptoms continued. Anne lost her appetite and had to force herself to eat; then she’d feel sick and quietly retreat to the bathroom to regurgitate. Her general practitioner suspected what was wrong, but to be sure he referred her to a psychiatrist. The diagnosis was made: anorexia nervosa with bulimia, a disorder marked by vomiting and an aversion to food. If the condition was not corrected, she could starve to death. Over the years, Anne had seen many internists before settling on her current one, a woman who devoted her practice to patients with eating disorders. Numerous specialists had also evaluated Anne. She had been treated with four different antidepressants and had undergone weekly talk therapy. Nutritionists closely monitored her daily caloric intake. But Anne’s health continued to deteriorate, and the past year had been the most miserable of her life. Her red blood cell count and platelets had dropped to perilous levels. A bone marrow biopsy showed few developing cells. Anne also had severe osteoporosis. One endocrinologist likened her bones to those of a woman in her eighties. Other signs pointed to a failing immune system; she suffered a series of infections. That year she had been hospitalized four times in a mental health facility so she could try to gain weight under supervision. To restore her system, her internist had told Anne to consume 3,000 calories a day, mostly in easily digested carbohydrates like cereals and pasta. But the more Anne ate, the worse she felt. Not only was she seized by intense nausea and the urge to vomit, but recently she had severe intestinal cramps and diarrhea. Her doctor said she had developed irritable bowel syndrome, a disorder associated with psychological stress. By December, Anne’s weight had dropped to 82 pounds. Although she insisted she was forcing down close to 3,000 calories, her internist and her psychiatrist took the steady loss of weight as proof that Anne was not telling the truth. That December day Anne was seeing Myron Falchuk ’67, chief of clinical gastroenterology at Beth Israel Deaconess Medical Center. Falchuk had already received her medical records, and her internist had presented Anne’s irritable bowel syndrome as yet another manifestation of her deteriorating mental health. Falchuk heard in the doctor’s recitation of the case the implicit message that his role was to poke and prod Anne’s abdomen and then to reassure her that irritable bowel syndrome, while uncomfortable and annoying, should be treated as the internist had recommended. But that is exactly what Falchuk did not do. Instead, he began to question, and listen, and observe, and then to think differently about Anne’s case. And by doing so, he saved her life. tell me a story Not long after Anne’s visit to Falchuk, I met with him in his office to talk about his patient. “Anne was emaciated and looked haggard,” Falchuk told me. “Her face was creased with fatigue. And the way she sat in the waiting room—so still, her hands clasped together—I saw how timid she was.” Falchuk read her body language: This was a woman beaten down by her suffering. She would need to be drawn out, gently. Medical students learn that the evaluation of a patient should proceed in a discrete, linear way: You first take the patient’s history, then perform a physical examination, order tests, and analyze the results. You formulate hypotheses about what might be wrong, then winnow them by assigning statistical probabilities to each symptom, physical abnormality, and laboratory test. From this, you calculate the likely diagnosis. This is Bayesian analysis, a favored method of decision-making in evidence-based practice that few, if any, physicians actually use. The physical examination begins with the first visual impression in the waiting room and with the tactile feedback gained by shaking a person’s hand. Hypotheses about the diagnosis come to a doctor’s mind even before a word of the medical history is spoken. In Anne’s case, of course, the specialist had a diagnosis on the referral sheet from the internist, confirmed by the multitude of doctors’ notes in her records. Falchuk ushered Anne into his office, his hand on her elbow, lightly guiding her to the chair that faces his desk. She looked at a stack of papers some six inches high. It was the dossier she had seen on the desks of her endocrinologists, hematologists, infectious disease physicians, psychiatrists, and nutritionists. For 15 years she had watched it grow. But then Falchuk did something that surprised Anne: He moved those records to the far side of his desk, withdrew a pen from the breast pocket of his white coat, and took a clean tablet of lined paper from his drawer. “Before we talk about why you are here today,” Falchuk said, “let’s go back to the beginning. Tell me about when you first didn’t feel good.” For a moment, she felt confused. But Falchuk offered a gentle smile. “I want to hear your story, in your own words.” Anne glanced at the clock on the wall, the steady sweep of the second hand ticking off precious time. Her internist had told her that Falchuk was a prominent specialist, that the waiting list to see him was long. But she detected no hint of rush or impatience in the doctor. His calm made it seem as though he had all the time in the world. So Anne began at the beginning, reciting the long and tortuous story of her initial symptoms, the many doctors she had seen, the tests she had undergone. As she spoke, Falchuk would nod or interject short phrases: “Uh-huh,” “I’m with you,” “Go on.” Occasionally Anne found herself losing track of the sequence of events or tests, but Falchuk did not seem concerned. Instead, he asked her about her recent attempts to gain weight. “Tell me again what happens after each meal,” he said. Anne was sure her internist had told Falchuk about the diet she had been following. But she continued. “I try to get down as much cereal in the morning as possible, and then bread and pasta at lunch and dinner.” Yet cramps and diarrhea followed nearly every meal. Anti-nausea medication had greatly reduced the frequency of her vomiting but had not helped the diarrhea. Falchuk paused. Anne saw his eyes drift away from hers. Then his focus returned, and he brought her into the examining room across the hall. There, he conducted a physical exam unlike any she’d had before. He looked carefully at her skin. He examined her palms, inspecting the creases as though he were a fortuneteller reading her lifelines. He spent a long while looking in her mouth with a flashlight, inspecting not only her tongue and palate but her gums and the glistening tissue behind her lips as well. He also spent time peering at the nails on both her hands and her feet. When the physical exam was over, he asked her to dress and return to his office. “I’m not at all sure this is irritable bowel syndrome,” he said, “or that your weight loss is due only to bulimia and anorexia nervosa. Something else may be going on that explains why you can’t restore your weight. I could be wrong, of course, but we need to be sure, given how frail you are and how much you are suffering.” Falchuk proposed more blood tests, which were simple enough, but then suggested an endoscopy. Anne felt exhausted from the endless evaluations and procedures. Despite his assurances that she would be sedated as the fiberoptic instrument was threaded into her small intestine, she doubted whether the procedure would be worth the trouble and discomfort. Anne was about to refuse, but then Falchuk repeated emphatically that something else might account for her condition. “Given how poorly you are doing, it may be that your body can’t digest the food you’re eating, that all those calories are just passing through you.” When I met with Anne one month after her first appointment with Falchuk, she said he’d given her the greatest Christmas present ever. She had gained nearly 12 pounds. The intense nausea, the urge to vomit, the cramps and diarrhea that followed each meal had all abated. The blood tests and the endoscopy had confirmed his suspicion: She had celiac disease. This autoimmune disorder—in essence an allergy to gluten, a primary component of many grains—was once believed to be rare, an illness primarily manifested during childhood. It has since become clear, though, that celiac disease symptoms may not begin until late adolescence or early adulthood, as Falchuk believed occurred in Anne’s case. Anne felt both elated and a bit dazed. After 15 years of struggling to get better, she had begun to lose hope. Now she had a new chance to restore her health. tell-tale signs Behind Myron Falchuk’s desk, a large sepia-tinged photograph occupies much of the wall. A group of austerely dressed men pose, some holding derby hats, some with thick, drooping mustaches. “That photograph was taken in 1913, when they opened the Brigham Hospital,” Falchuk explained. “William Osler gave the first grand rounds.” This great icon of modern medicine was acutely sensitive to the power and importance of words, and his writings greatly influenced Falchuk. “Osler essentially said that if you listen to the patient, he is telling you the diagnosis,” Falchuk said. “Once you remove yourself from the patient’s story, you no longer are truly a doctor.” How doctors think can first be discerned by how they speak and how they listen. Nonverbal communication—the body language of both patient and doctor—plays a role as well. Debra Roter, a professor in the Department of Health, Behavior and Society at the Johns Hopkins Bloomberg School of Public Health, and Judith Hall, a professor of psychology at Northeastern University, have together analyzed thousands of videotapes and live interactions between doctors and patients, parsing phrases and physical movements. The two researchers have found that the ways in which doctors ask questions and their responses to their patients’ emotions are key to what they term “patient activation and engagement.” The idea, Roter explained to me, is to encourage patients to feel free, if not eager, to participate in a dialogue. If the patient is inhibited, or cut off prematurely, or constrained into one path of discussion, then the doctor may not learn something vital. Observers have noted that, on average, physicians interrupt within 18 seconds of when a patient begins telling his or her story. Roter’s and Hall’s insights can illuminate the case of Anne Dodge. Falchuk began their conversation with a general, open-ended question about when she first began to feel ill. “The way a doctor asks a question,” Roter said, “structures the patient’s answers.” Had Falchuk asked a specific question—“What kind of abdominal pain do you have, sharp or dull?”—he would have revealed a preconception that Anne had irritable bowel syndrome. “If you are unsure of the diagnosis,” Roter says, “then a close-ended question serves you ill, because it immediately, perhaps irrevocably, moves you along the wrong track.” The type of question a doctor asks is only half of a successful medical dialogue. Most patients are gripped by fear and anxiety; some also carry a sense of shame about their disease. “Even if the doctor asks the right questions,” Roter said, “the patient may not be forthcoming because of his emotional state. The goal of physicians is to get to the story, and to do so they must understand the patient’s emotions.” In addition, Roter says, “Doctors have to convey an interest in hearing what the patients have to say. When a patient tells his story, he gives cues and clues to what the doctor may not be thinking about.” Hall has focused further on the emotional dimension: whether the doctor and patient like each other. She discovered that those feelings are hardly secret on either side of the table. In studies of primary care physicians and surgeons, patients knew remarkably accurately how the doctor felt about them. Much of this, of course, comes from nonverbal behavior: the physician’s facial expressions, posture, and warmth of gesture. Hall discovered that the sickest patients are the least liked by doctors, and that patients sense this disaffection. Overall, doctors tend to like healthier people more. Why is this? Many doctors have deep feelings of failure when dealing with diseases that resist even the best therapy; in such cases they become frustrated, because all their hard work seems in vain. So they stop trying. In fact, few physicians would welcome patients like Anne Dodge warmly. Consider how much time and attention caregivers had given Anne over those 15 years, without a glimmer of improvement. Roter and Hall also studied the effect a doctor’s bedside manner has on successful diagnosis and treatment. “We tend to remember the extremes,” Hall said, “the genius surgeon with an autistic bedside manner, or the kindly GP who is not terribly competent. But the good stuff goes together—good doctoring generally requires both. You need information to get at the diagnosis, and the best way to get that information is by establishing rapport with the patient. Competency is not separable from communication skills.” make no mistake The more Falchuk observed Anne, and the more he listened, the more disquiet he felt. “It just seemed impossible to absolutely conclude it was all psychiatric,” he said. “My intuition told me that the picture didn’t entirely fit. I began to wonder: What was missing?” When Falchuk told me that the picture didn’t fit, his words were more than mere metaphor. Doctors frame patients all the time using shorthand: “I’m sending you a case of diabetes and renal failure,” or “I have a drug addict here in the ER with fever and a cough from pneumonia.” Often a doctor chooses the correct frame and all the clinical data fit neatly within it. But a self-aware physician knows that accepting the frame as given can be a serious error. “It’s like DNA evidence at a crime,” Falchuk explained. “The patient was saying ‘I told you, I’m innocent.’” Here is the art of medicine, the sensitivity to language and emotion that makes for a superior clinician. Intellect and intuition, careful attention to detail, active listening, and psychological insight all coalesced on that December day. Falchuk had asked himself, “What might I be missing in this case? And what would be the worst thing that could be missed?” What if he had not asked himself those questions? Then Anne, her boyfriend, or a family member could have asked them. But patients and their loved ones lack the doctor’s training and experience. In Anne’s case, it was Falchuk who asked simple but ultimately lifesaving questions, and to answer them he needed to go further. And for Anne to assent to more blood tests and an invasive procedure, she had to trust not only his skill but also his sincerity and motivations. This is the other dimension of Roter’s and Hall’s studies: how language, spoken and unspoken, can give information essential to a correct diagnosis and persuade a patient to comply with a doctor’s advice. “Compliance” can smack of paternalism, casting patients as passive players who do what the all-powerful physician tells them. But without trust and a sense of mutual liking, Anne probably would have deflected Falchuk’s suggestions of more blood tests and an endoscopy. She would have been “noncompliant,” in pejorative clinical parlance. And she would still be struggling to persuade her doctors that she was eating thousands of calories a day while wasting away. No doctor is right all the time. Every physician, even the most brilliant, makes a misdiagnosis or chooses the wrong therapy. This is not a matter of a “medical mistake,” such as prescribing the wrong dose or viewing an x-ray backward. Misdiagnoses provide a window into the medical mind. They reveal why doctors fail to question their assumptions, why their thinking is sometimes closed or skewed, why they overlook the gaps in their knowledge. Experts studying misguided care have recently concluded that most errors can be attributed to flaws in physician thinking, not technical mistakes. In one study of misdiagnoses that caused serious harm to patients, some 80 percent could be accounted for by a cascade of cognitive errors, placing a patient into a narrow frame and ignoring information that contradicted a fixed notion. Another study found that inadequate medical knowledge was the reason for error in only four of a hundred incorrect diagnoses. The doctors stumbled because they fell into cognitive traps. Such errors produce a distressingly high rate of misdiagnosis. As many as 15 percent of all diagnoses are inaccurate, according to a 1995 report in which doctors assessed written descriptions of patients’ symptoms and examined actors simulating patients with various diseases. These findings match classic research, based on autopsies, which shows that 10 to 15 percent of all diagnoses are wrong. The skewing of physicians’ thinking leads to poor care. What is remarkable is that so few patients understand the effect of a physician’s negativity on their medical care and change doctors because of it. Rather, they often blame themselves for complaining and taxing the doctor’s patience. Patients may be able to resolve the problem with candor. But when I asked other physicians what they would do if they, as patients, perceived a negative attitude from their doctor, each one flatly said he or she would find another doctor. As for Anne Dodge, she’s alive because she found another doctor—one who listened. Jerome Groopman is the Dina and Raphael Recanati Professor of Medicine at Harvard Medical School and chief of experimental medicine at Beth Israel Deaconess Medical Center. This essay is excerpted from How Doctors Think, published by Houghton Mifflin Company. Copyright © 2007 by Jerome Groopman. Reprinted by permission of Houghton Mifflin Company. All rights reserved. To protect her privacy, the name and certain identifying characteristics of the patient have been changed. Photo: Matthieu Spohn/Photoalto/Veer |
2004, on a surprisingly mild morning, she was driving into Boston to see yet another physician. Her primary care doctor had opposed the trip, arguing that Anne’s problems were so long-standing and so well defined that this consultation would be useless. But her boyfriend had stubbornly insisted. 
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