Every Patient Tells a Story (7 page)
“Damn. It’s big too,” conceded Fitzgerald, shaking her head. “It’s really amazing that it didn’t announce itself more clearly. Oh well, you can’t win them all, now can you?” she said, facing the audience with a roguish smile. The audience applauded enthusiastically.
I turned to the young woman sitting next to me, still clapping. “Aren’t you disappointed that she got it wrong?” I asked. She shook her head. “No way. This is about the process—hearing the story and putting it all together.
I started off wanting to be a surgeon, but I realized that it was internal medicine that would keep me on my toes intellectually.”
The man sitting next to her leaned over and added, “I didn’t come here for the answer. I come to see the thinking.”
Getting the right diagnosis is, of course, what you always want—and will usually get on TV and in the movies. But doctors are hungry to hear how others think a case through. Translating the big, various, complicated, contradictory story of the human being who is sick into the spare, stripped-down, skeletal language of the patient in the bed, and then making that narrative reveal its conclusion—that is the essence of diagnosis. Like a great Hitchcock film, the revelation at the end is not nearly as interesting as the path that gets us there. So despite her wrong answer, it was exciting to watch Fitzgerald work her way through this complicated case. And, in the other two cases presented that afternoon, she was right. I caught up with Fitzgerald later that day. “Oh, I’m wrong a lot, but my audience seems to forgive me.” Fitzgerald laughed, then added, “It’s a form of entertainment. A lot of the appeal of internal medicine is Sherlockian—solving the case from the clues. We are detectives; we revel in the process of figuring it all out. It’s what doctors most love to do.”
The kind of story Javed Nasir told to Fitzgerald is at the very heart of that Sherlockian process. It is one of the fundamental tools of diagnosis. Doctors build a story about the patient in order to make a diagnosis. It is a story based on the patient’s story but it is freed of most of the particular details of the individual, and structured to allow the recognizable pattern of the illness to be seen. In the last chapter I looked at the process of getting the story from the patient and the final task of giving it back to the patient. Here I want to look at just what it is that doctors do with that story to make it yield the diagnosis.
Done well, the doctor’s version of the story often holds the key to recognizing the pattern of an illness, leading to a diagnosis. Much of the education doctors get in their four years of medical school and subsequent years
of apprenticeship training is focused on teaching this skill of identifying and shaping those aspects of a patient’s life and symptoms, exams and investigations that contribute to the creation of a version of the patient’s story that makes a diagnosis possible. Indeed, the ability to create this spare and impersonal version of the patient’s story is
the
essential skill in diagnosis.
It’s also one of the aspects of medicine that can seem most dehumanizing. It’s how the elegant retired schoolteacher who mesmerized three generations of her students with stories of the Roman Empire as she inspired them to master noun declensions in Latin is quickly reduced, in diagnosis-speak, to the seventy-three-year-old woman with rapidly progressive dementia in room 703.
How doctors apply general medical knowledge to the particular patient has been an area of intense interest and research for decades. Current thinking focuses on stories as the key. The basic sciences of anatomy, physiology, biology, and chemistry are linked to a patient at the bedside through very specific stories that doctors learn and eventually create. These stories, what researchers now call illness scripts, contain key characteristics of a disease to form an iconic version, an idealized model of that particular disease. For any individual disease, the illness script will be a loosely organized aggregate of information about the typical patient, about the usual symptoms and exam findings—with an emphasis on those that are unique or unusual—as well as information about the pathology and biology of the disease itself. It is the story that every doctor puts together for herself with the knowledge she gains from books and patients. The more experience a doctor has with any of these illnesses, the richer and more detailed the illness script she has of the disease becomes.
Development of a large library of these illness scripts has been the goal of medical training since long before it was described this way. When I was a student and then a resident in the 1990s, you’d hear older doctors tell you that the only bed you couldn’t learn from was your own. That’s why residency programs exist. Seeing more patients helps you learn more medicine and become a better doctor.
One of the ways doctors are taught to think about disease, one of the ways that these illness scripts get structured, is through the use of what are known as clinical pearls—observations and aphorisms containing nuggets of information about patients and likely diagnoses. This is a teaching technique that dates back to the days of Hippocrates, who published several volumes simply titled
Aphorisms
. Modern medical students are drilled on the five Fs of gallbladder disease—female, fat, forty, fertile, and fair—the characteristics of the most typical patient. They are pumped on Charcot’s triad—fever, jaundice, and right upper quadrant pain (the diagnostic trio of a gallbladder infection that is spreading to the liver).
Clinical pearls are often cleverly worded to make it easier for students to remember them. When taking care of a patient who came in with a paralyzed arm and a facial droop I was told: a stroke is only a stroke after 50 of D50—a reminder that low blood sugar (which can be treated with 50 mg of 50 percent dextrose, or D50) can cause symptoms that imitate those of a stroke. When I was seeing a patient in the ER brought in after being found in a snowbank, a patient who had no detectable heart rate or blood pressure, I was told: a man isn’t dead until he’s warm and dead. That is, in conditions of extreme hypothermia (low body temperature), vital signs may be undetectable until the body temperature is brought up to a near normal range. And in fact this patient recovered fully. These pearls are little snippets of the illness script, snippets that help doctors connect a patient to a diagnosis.
Doctors create stories about patients that are organized like these illness scripts. Using the barest most generalized recounting of the patient’s characteristics, his symptoms, his exam and test results, the doctor tries to match that story to an illness script in order to make a diagnosis, or at least build a differential. A well-constructed story might even help a doctor who has never seen a patient to come up with the right diagnosis.
Tamara Reardon is alive today because a doctor—not
her
doctor—was able to make a diagnosis based on a one-line description of her illness. Tamara was forty-four years old, a mother of four, and healthy until one day in early
spring when she woke up with a sore throat and a fever. She took some Advil, got her children off to school, and went back to bed. She was still there when the kids got home that afternoon. She roused herself enough to get them started on their homework, then returned once more to bed. Her entire body ached; she alternated between shuddering chills even under a half dozen blankets and waves of heat marked by drenching sweats. Her husband made dinner that night but she couldn’t eat. The next day she could barely drag herself out of bed to see her doctor. She still had a fever, her throat was on fire, and she had a new symptom: her jaw hurt, mostly on the right, so that talking and eating were excruciating. When the doctor had her open her mouth so he could look at her throat, it hurt so much she cried.
Tonsillitis was his diagnosis. Probably strep throat. An outbreak had roared through her household a few weeks before, so the doctor didn’t even send a culture. He simply sent her home with a prescription for an antibiotic called Biaxin. After a couple of days of antibiotics Tamara began to feel better. The fever came down and her throat was less painful, but now she noticed a lump in her neck that had her worried. She went back to her doctor. He looked down her throat. It was much easier this time—her jaw was no longer painful. Her tonsils looked fine—the fiery red color was gone and they no longer looked swollen. But across the back of her throat the doctor saw patches of white that hadn’t been there before. And her neck was swollen and tender on the right. The doctor thought the swelling was probably just a lymph node still inflamed from her recent infection, but he was a little puzzled about the white patches. He gave Tamara a week’s worth of prednisone—a steroid—to reduce the inflammation since it was bothering her. And he made an appointment for her to see an Ear, Nose, and Throat doctor about those white patches.
The steroids reduced the swelling in her neck almost immediately. And the fatigue and achy feeling she’d had since she’d first gotten sick started to ease up. Whatever she’d had, it was gone now.
The day after she’d taken her last dose of prednisone, she woke up with a fever. And the swelling on her neck was back—and even worse than it had been before she’d taken the steroids. She could hardly open her mouth.
She could not move her neck. She had an appointment with the ENT the next day, but Tamara felt too sick to wait. Her husband drove her to the emergency room and after waiting a couple of hours she was given some Darvocet (a painkiller) and advised to see her ENT the next day.
She did, but he wasn’t certain what was going on either. She had a fever and her neck was swollen and red on the right. It seemed too extensive to simply be her lymph nodes. He worried she might have an abscess hidden in her tonsils. The white patches her doctor had been worried about were gone. He looked into her throat using a tiny camera embedded at the end of a slender tube. He couldn’t find any evidence of an abscess, so he gave her a few more days of steroids and another round of antibiotics. And he got a CT of her neck.
That night the ENT went to a meeting of his local medical society. He ran into an old friend, Dr. Michael Simms, a specialist in infectious disease. As they made their way to their seats, the ENT thought of this baffling case. “Hey Mike, let me run something by you. I’ve got a forty-four-year-old woman with a history of tonsillitis who now has fever, jaw pain, and swelling on the right side of her neck. I got a CT scan and there’s no abscess, just a clot in the jugular vein. Do you know what this is?” Simms looked at his friend. He ticked through the facts the ENT had related: “She had a recent case of tonsillitis, and now has fever and pain in the right side of her neck and a clot in her jugular vein?” The ENT nodded. “I think she has Lemierre’s disease,” Simms told him, instantly.
Dr. André Lemierre, a physician in Paris, first described this disease in 1936. It’s rare, and seen most often in adolescents and young adults. Lemierre wrote up several cases of this illness, which begins with a fever and tonsillitis and progresses to a painful and often swollen neck as the infection moves into the jugular vein. Once there, the bacteria induce the formation of blood clots, which then shower the rest of the body with tiny bits of infected tissue.
Before the discovery of penicillin the disease was usually fatal. The widespread use of penicillin to treat all severe sore throats during the 1960s and 1970s virtually wiped out the disease. But over the past twenty years, Lemierre’s
has staged something of a comeback—an unintended consequence of a more cautious use of antibiotics and the development of new drugs—like Biaxin, which is what Tamara was given—that are easier to take but far less effective than penicillin against this potentially deadly infection.
Simms saw Tamara the next day. Since starting the medications she felt much better—hardly sick at all—so she was surprised when Simms recommended that she go to the hospital that very day. She went, and just in time. The infection had already moved into her lungs. She had a rocky course, and ended up spending nearly two months in the hospital—but she survived.
With only a couple of sentences, and a handful of facts about the case, Michael Simms was able to diagnose this woman he had never seen, a patient whose diagnosis had already been missed by two primary care doctors and a doctor specializing in diseases of the head and neck. That is the power of these little stories.
Clearly, knowledge is an important part of this. Simms was able to make this diagnosis because he knew this disease. It’s rare, so it’s likely that the patient’s primary care doctor and the ER doctor had never heard of it. But the ENT knew about this disease. When Simms mentioned Lemierre’s, he’d recognized it. But somehow he hadn’t been able to connect the knowledge of the disease with its classic clinical presentation. Somehow he hadn’t created a story or illness script for this entity. Maybe he’d never seen it before either. I doubt he’ll miss it again.
Doctors are constantly adding to the number and richness of the illness scripts in their heads. Every patient contributes. Lectures can too. Most speakers start off with a classic patient story before presenting their research on a disease or topic. Medical journals often present difficult cases in their pages. Like those presented to Fitzgerald, these cases teach doctors about a particular disease, and about the construction of the story that can help the doctor link the patient to the diagnosis.
These stripped-down stories, while useful to the diagnostic process, bear little resemblance to the stories a patient tells the doctor. Doctors strip away
the personal and specific to make their version of the story and in doing so sometimes forget that the reason we do this is to help the person in the bed. That person is more than their disease, but sometimes that seems to get forgotten. When doctors confuse the story they have created about the patient’s disease with the patient himself, this contributes to a sense that medicine is cold and unfeeling and indifferent to the suffering of patients—the opposite of what medicine should be.
Dr. Nancy Angoff is the dean of students at Yale Medical School. She watches over the one hundred students of each class as they wend their way from student to doctor. She’s concerned that medical education spends too much time on focusing the students’ attention on the disease and not enough time on the patient. She cringes when she overhears a student refer to a patient by his disease and location, or when the discussion of a cool diagnosis overlooks the potentially tragic consequences for the person with the diagnosis. She worries that the doctors they will become will forget how to talk to the patient, to listen to the patient, to feel for the patient. For years she worried that in the excitement of mastering the language and culture of medicine they might lose the empathy that brought them to medical school in the first place.