Authors: Jerome Groopman
Dr. Falchuk paused. Anne Dodge saw his eyes drift away from hers. Then his focus returned, and he brought her into the examining room across the hall. The physical exam was unlike any she'd had before. She had been expecting him to concentrate on her abdomen, to poke and prod her liver and spleen, to have her take deep breaths, and to look for any areas of tenderness. Instead, he looked carefully at her skin and then at her palms. Falchuk intently inspected the creases in her hands, as though he were a fortuneteller reading her lifelines and future. Anne felt a bit perplexed but didn't ask him why he was doing this. Nor did she question why he spent such 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 a long time examining her nails, on both her hands and her feet. "Sometimes you can find clues in the skin or the lining of the mouth that point you to a diagnosis," Falchuk explained at last.
He also seemed to fix on the little loose stool that remained in her rectum. She told him she had had an early breakfast, and diarrhea before the car ride to Boston.
When the physical exam was over, he asked her to dress and return to his office. She felt tired. The energy she had mustered for the trip was waning. She steeled herself for yet another somber lecture on how she had to eat more, given her deteriorating condition.
"I'm not at all sure this is irritable bowel syndrome," Dr. Falchuk said, "or that your weight loss is only due to bulimia and anorexia nervosa."
She wasn't sure she had heard him correctly. Falchuk seemed to recognize her confusion. "There may be something else 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."
Anne felt even more confused and fought off the urge to cry. Now was not the time to break down. She needed to concentrate on what the doctor was saying. He proposed more blood tests, which were simple enough, but then suggested a procedure called an endoscopy. She listened carefully as Falchuk described how he would pass a fiberoptic instrument, essentially a flexible telescope, down her esophagus and then into her stomach and small intestine. If he saw something abnormal, he would take a biopsy. She was exhausted from endless evaluations. She'd been through so much, so many tests, so many procedures: the x-rays, the bone density assessment, the painful bone marrow biopsy for her low blood counts, and multiple spinal taps when she had meningitis. Despite his assurances that she would be sedated, she doubted whether the endoscopy was worth the trouble and discomfort. She recalled her internist's reluctance to refer her to a gastroenterologist, and wondered whether the procedure was pointless, done for the sake of doing it, or, even worse, to make money.
Dodge was about to refuse, but then Falchuk repeated emphatically that something else might account for her condition. "Given how poorly you are doing, how much weight you've lost, what's happened to your blood, your bones, and your immune system over the years, we need to be absolutely certain of everything that's wrong. It may be that your body can't digest the food you're eating, that those three thousand calories are just passing through you, and that's why you're down to eighty-two pounds."
When I met with Anne Dodge one month after her first appointment with Dr. Falchuk, she said that he'd given her the greatest Christmas present ever. She had gained nearly twelve pounds. The intense nausea, the urge to vomit, the cramps and diarrhea that followed breakfast, lunch, and dinner as she struggled to fill her stomach with cereal, bread, and pasta had all abated. The blood tests and the endoscopy showed that she had celiac disease. This is an autoimmune disorder, in essence an allergy to gluten, a primary component of many grains. Once believed to be rare, the malady, also called celiac sprue, is now recognized more frequently thanks to sophisticated diagnostic tests. Moreover, it has become clear that celiac disease is not only a childhood illness, as previously thought; symptoms may not begin until late adolescence or early adulthood, as Falchuk believed occurred in Anne Dodge's case. Yes, she suffered from an eating disorder. But her body's reaction to gluten resulted in irritation and distortion of the lining of her bowel, so nutrients were not absorbed. The more cereal and pasta she added to her diet, the more her digestive tract was damaged, and even fewer calories and essential vitamins passed into her system.
Anne Dodge told me she was both elated and a bit dazed. After fifteen years of struggling to get better, she had begun to lose hope. Now she had a new chance to restore her health. It would take time, she said, to rebuild not only her body but her mind. Maybe one day she would be, as she put it, "whole" again.
Behind Myron Falchuk's desk, a large framed photograph occupies much of the wall. A group of austerely dressed men pose, some holding derby hats, some with thick drooping mustaches like Teddy Roosevelt's; the sepia tinge of the picture and the men's appearance date it to the early 1900s. It seems out of phase with Falchuk's outgoing demeanor and stylish clothes. But it is, he says, his touchstone.
"That photograph was taken in 1913, when they opened the Brigham Hospital," Falchuk explained. "William Osler gave the first grand rounds." A smile spread across his face. "It's a copy. I didn't steal the original when I was chief resident." Osler 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 continued. "A lot of people look at a specialist like me as a technician. They come to you for a procedure. And there is no doubt that procedures are important, or that the specialized technology we have these days is vital in caring for a patient. But I believe that this technology also has taken us away from the patient's story." Falchuk paused. "And once you remove yourself from the patient's story, you no longer are truly a doctor."
How a doctor thinks can first be discerned by how he speaks and how he listens. In addition to words spoken and heard, there is nonverbal communication, his attention to the body language of his patient as well as his own body language—his expressions, his posture, his gestures. Debra Roter, a professor of health policy and management at Johns Hopkins University, works as a team with Judith Hall, a professor of social psychology at Northeastern University. They are among the most productive and insightful researchers studying medical communication. They have analyzed thousands of videotapes and live interactions between doctors of many types—internists, gynecologists, surgeons—and patients, parsing phrases and physical movements. They also have assayed the data from other researchers. They have shown that how a doctor asks questions and how he responds to his patient's emotions are both key to what they term "patient activation and engagement." The idea, as Roter put it when we spoke, is "to wake someone up" so that the patient feels free, if not eager, to speak and participate in a dialogue. That freedom of patient speech is necessary if the doctor is to get clues about the medical enigma before him. If the patient is inhibited, or cut off prematurely, or constrained into one path of discussion, then the doctor may not be told something vital. Observers have noted that, on average, physicians interrupt patients within eighteen seconds of when they begin telling their story.
Let's apply Roter's and Hall's insights to 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, close-ended question—"What kind of abdominal pain do you have, is it sharp or dull?"—he would have implicitly revealed a preconception that Anne Dodge had irritable bowel syndrome. "If you know where you are going," Roter said of doctors' efforts to pin down a diagnosis, "then close-ended questions are the most efficient. But if you are unsure of the diagnosis, then a close-ended question serves you ill, because it immediately, perhaps irrevocably, moves you along the wrong track." The great advantage of open-ended questioning is that it maximizes the opportunity for a doctor to hear new information.
"What does it take to succeed with open-ended questions?" Roter asked rhetorically. "The doctor has to make the patient feel that he is really interested in hearing what they have to say. And when a patient tells his story, the patient gives cues and clues to what the doctor may not be thinking about."
The type of question a doctor asks is only half of a successful medical dialogue. "The physician should respond to the patient's emotions," Roter continued. Most patients are gripped by fear and anxiety; some also carry a sense of shame about their disease. But a doctor gives more than psychological relief by responding empathetically to a patient. "The patient does not want to appear stupid or waste the doctor's time," Roter said. "Even if the doctor asks the right questions, the patient may not be forthcoming because of his emotional state. The goal of a physician is to get to the story, and to do so he has to understand the patient's emotions."
Falchuk immediately discerned emotions in Anne that would inhibit her from telling her tale. He tried to put her at ease by responding sympathetically to her history. He did something else that Roter believes is essential in eliciting information: he turned her anxiety and reticence around and engaged her by indicating that he was listening actively, that he wanted to hear more. His simple interjections—"uh-huh, I'm with you, go on"—implied to Anne Dodge that what she was saying was important to him.
Judy Hall, the social psychologist, has focused further on the emotional dimension of the dialogue between doctor and patient: whether the doctor appears to like the patient and whether the patient likes the doctor. 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 actually felt about them. Much of this, of course, comes from nonverbal behavior: the physician's facial expressions, how he is seated, whether his gestures are warm and welcoming or formal and remote. "The doctor is supposed to be emotionally neutral and evenhanded with everybody," Hall said, "and we know that's not true."
Her research on rapport between doctors and patients bears on Anne Dodge's case. Hall discovered that the sickest patients are the least liked by doctors, and that very sick people sense this disaffection. Overall, doctors tend to like healthier people more. Why is this? "I am not a doctor-basher," Hall said. "Some doctors are averse to the very ill, and the reasons for this are quite forgivable." 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 welcome patients like Anne Dodge warmly. Consider: fifteen years of anorexia nervosa and bulimia, a disorder with a social stigma, a malady that is often extremely difficult to remedy. Consider also how much time and attention Anne had been given over those fifteen years by so many caregivers, without a glimmer of improvement. And by December 2004, she was only getting worse.
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. Good doctoring is a total package." This is because "most of what doctors do is talk," Hall concluded, "and the communication piece is not separable from doing quality medicine. 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. It's not a tradeoff."
Falchuk conducts an inner monologue to guide his thinking. "She told me she was eating up to three thousand calories a day. Inside myself, I asked: Should I believe you? And if I do, then why aren't you gaining weight?" That simple possibility had to be carried to its logical end: that she was actually trying, that she really was putting the cereal, bread, and pasta in her mouth, chewing, swallowing, struggling not to vomit, and still wasting away, her blood counts still falling, her bones still decomposing, her immune system still failing. "I have to give her the benefit of a doubt," Falchuk told himself.
Keeping an open mind was reflected in Falchuk's open-ended line of questioning. The more he observed Anne Dodge, and the more he listened, the more disquiet he felt. "It just seemed impossible to absolutely conclude it was all psychiatric," he said. "Everyone had written her off as some neurotic case. But my intuition told me that the picture didn't entirely fit. And once I felt that way, I began to wonder: What was missing?"
Clinical intuition is a complex sense that becomes refined over years and years of practice, of listening to literally thousands of patients' stories, examining thousands of people, and most important, remembering when you were wrong. Falchuk had done research at the National Institutes of Health on patients with malabsorption, people who couldn't extract vital nutrients and calories from the food they ate. This background was key to recognizing that Anne Dodge might be suffering not only from anorexia nervosa or bulimia but also from some form of malabsorption. He told me that Anne reminded him that he had been fooled in the past by a patient who was also losing weight rapidly. That woman carried the diagnosis of malabsorption. She said she ate heartily and had terrible cramps and diarrhea, and her many doctors believed her. After more than a month of evaluation, with numerous blood tests and an endoscopy, by chance Falchuk found a bottle of laxatives under her hospital bed that she had forgotten to hide. Nothing was wrong with her gastrointestinal tract. Something was tragically wrong with her psyche. Falchuk learned that both mind and body have to be considered, at times independently, at times through their connections.