Every Patient Tells a Story

by Lisa Sanders

  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.

  When Angoff became the dean of students, she decided to see if she could do something to prevent that transformation. And she wanted to do it right from the start, right from the very first day of school. “Students come here and they are very excited about medicine. They want to help the sick patient, and medicine is the tool that makes that possible. That’s why they are here. But medical schools don’t teach you about the patient, they teach you about the disease. I wanted to emphasize the patient right from the very first day.”

  As part of that effort, Angoff has shaped that first day at Yale Medical School to try to “vaccinate” the students against the focus on the disease and the depersonalization of the patient that is part and parcel of current medical education. To do this, she focuses on the difference between the patient’s story and the story the doctors create from it.

  So on a warm September morning, I returned to the classroom in which I had spent most of my first two years as a medical student to see what a new generation of med students is taught about the stories we hear and those we tell as doctors.

  As Angoff, a small and slender woman in her mid-fifties, stepped
onto the stage, the nervous chatter of these brand-new students quickly died. She said a few words of welcome and then outlined the events of the morning. We would hear two versions of a patient’s story, first as the patient told it and then as it might have been written up by a doctor caring for the patient in the hospital.

  The stories were to be performed by Dr. Alita Anderson. Anderson is a young black woman in her early thirties. A Yale Medical School graduate (class of 2000), Anderson spent a year interviewing patients about their experiences in the health care setting. All of the patients she interviewed were African American, most were poor; many were poorly educated as well. All had multiple encounters with a medical system that was only sometimes responsive to their needs. She now travels around the country performing the stories she collected from this often unheard population.

  Anderson gave Angoff a hug and then walked slowly across the stage. She began to sing a slow sad song in a husky alto. I couldn’t quite understand the words and I didn’t recognize the song, but it sounded like some kind of spiritual.

  Anderson settled in a lonely chair on the stage and finished the song. She sat quietly for a moment and then said in a rumbly southern voice, “In June 1967, I went to Vietnam. I was a member of the First Infantry Division. My first evening there, they sent me out on an ambush.” She didn’t have any props, nor a costume, but through her voice and expressions she became this middle-aged black man who never recovered from the battlefields and bars of his year in the Vietnam War. She portrayed this man, clearly destroyed by an almost lethal dose of post-traumatic stress disorder, drugs and liquor. It was a compelling performance.

  Anderson, still speaking as this sad middle-aged man, described a particularly difficult episode in his life. “I had been drinking. I was very loud and belligerent that night and my sister, who is probably the closest person to me, walked off and said that she was never going anywhere with me again. Afterward, I went out to the Dumpster and I threw the bottle in that Dumpster and I said that I was never going to drink anymore. I tried to stop on my own, but the next morning when the liquor store was open I was right there buying another bottle. A lot of times, people—they want off but they have no control. That is what the bondages of Satan do, using alcohol and drugs.”

  When she finished this man’s monologue, Anderson sang a reprise of the sad song that she’d started with. As she sang, a slide appeared on a screen behind her. Anderson seamlessly switched into a professional voice, with crisp diction and shorn of any accent as she read a re-creation of what a hospital admission note from any of his many hospital admissions might have read. “Chief complaint—a thirty-four-year African American male brought in by police; a question of a drug overdose.

  “The history of the presenting illness: The patient was found unresponsive and brought to ER. He was intubated in the field to protect his airway since he was actively seizing, which caused respiratory depression when he was found. In the ER, the patient was minimally responsive to pain. Per police, he had 3 grams of cocaine in pocket. He has been identified by his driver’s license as Mr. R. Johnson whose prior medical records indicate multiple past admissions for drug overdose.”

  The students sat in rapt silence throughout the hour-long performance. The contrast between the rich, detailed life portrayed by the young doctor-reporter and the spare, cold language with which it was portrayed in the imagined, but realistic, admission note could not have been stronger. Afterward the students sat in small groups discussing the morning’s event. They were moved by the patient’s story and horrified by its translation into the coolly impersonal language of medicine.

  Angoff sees this as an opportunity to demonstrate what patients see all the time: the cold and depersonalizing language and process of medicine. “I want to remind our students that there’s a real person here.” Medical students fall in love with what the doctor’s story can do, what medicine can do, she tells me. The morning’s performance is there to remind them of what a patient’s story can do and how the infatuation can look and sound to the patient they are trying to help.

  At the end of the morning Angoff said a few words to the students, summarizing what she hoped they have learned. “You’re starting out on the journey across this bridge, this education, and right now you are on the same side as your patients. And as you get halfway over the bridge you’ll find yourself changing and the language the patient had and you had is being replaced by this other language, the language of medicine. Their personal story is being replaced by the medical story. And then you find yourself on the other side of that bridge—you’re part of the medical culture. When you get there, I want you to hold on to every bit of your old self, your now self. I want you to remember these patients.”

  CHAPTER THREE

  A Vanishing Art

  Here’s a story I read not long ago in the New England Journal of Medicine:

  A man in his fifties comes to an emergency room with excruciating chest pain. A medical student is told to check the blood pressure in both arms. He checks the closer arm and calls out the blood pressure. He moves to the other side of the patient but is unable to find a blood pressure. Worried that this is due to his inexperience rather than a true physical finding, he says nothing. No one notices. Overnight the patient is rushed to the operating room for repair of a tear in the aorta, the vessel that carries blood out of the heart to the rest of the body. He dies on the operating table.

  A difference in blood pressure between arms or the loss of blood pressure in one arm is strong evidence of this kind of tear, known as a dissecting aortic aneurysm. The student’s failure to speak up about his inability to read the blood pressure on one side of the patient’s body prevented the discovery of this evidence.

  Here’s another story—this one from a colleague of mine:

  A middle-aged woman comes to the hospital with a fever and difficulty breathing. She’d been treated for pneumonia a week earlier. In the hospital she’s started on powerful intravenous antibiotics. The following day she complains of pain in her back and weakness in her legs. She has a history of chronic back pain and her doctors give her painkillers. They do not examine her. When her fever spikes and her white blood cell count soars, the team gets a CT scan of the chest, looking for something in her lungs that would account for a worsening infection. What they find instead is an abscess on her spinal cord. She is rushed to surgery.

  Had the team examined her, they would have found a loss of sensation and reflexes, which would have alerted them to the presence of the spinal cord lesion.

  This story was recently presented at Grand Rounds, a high-profile weekly lecture for physicians, at Yale:

  A man has a heart attack and is rushed to the hospital, where the blocked coronary artery is reopened. In the ICU, his blood pressure begins to drop; he complains of feeling cold and nauseated. The doctors order intravenous fluids to bring up his dangerously low blood pressure. They do not examine him. When, after several hours, his blood pressure continues to drop, the cardiologist is called and she rushes back. When she examines him she sees that his heart is beating rapidly but is barely audible. The veins in his neck are distended and throbbing. She immediately recognizes these as signs that the man has bled into the sac around his heart—a condition known as tamponade. It is a well-known complication of the procedure she’d done just hours before. She rushes him back to the OR and begins draining the blood, which by now completely fills the sac, preventing the heart from beating. Despite her efforts, the man dies on the table. Had the doctors in the ICU examined the patient, rather than paying attention only to the monitors tracking his vital signs, they would have been able to diagnose this potentially reversible complication.

  This is another kind of story doctors tell one another in hospital hallways and stairwells—cautionary tales from the pages of our best journals, cases presented at the weekly Grand Rounds or Morbidity and Mortality Conferences, where medical errors are traditionally discussed. These are the tragic stories of patients
who worsen and sometimes die because clues that could have and should have been picked up with a simple physical examination were overlooked or ignored. We repeat them to one another as lessons learned—a prayer and talisman. We tell them with sympathy because we fear that any one of us might have been that doctor, that resident, that medical student.

  These anecdotes reveal a truth already accepted by most doctors: the physical exam—once our most reliable tool in understanding and diagnosing a sick patient—is dead.

  It wasn’t a sudden or unanticipated death. The death of the physical exam has been regularly and carefully discussed and documented in hospital hallways and auditoriums and in the pages of medical journals for over twenty years. Editorials and essays have posed once unthinkable questions like: “Physical diagnosis in the 1990s: Art or artifact?” or “Has medicine outgrown physical diagnosis?” and “Must doctors examine patients?” And finally in 2006, the flat announcement of the long-anticipated death was carried in the pages of the New England Journal of Medicine. In “The Demise of the Physical Exam,” Sandeep Jauhar tells the story of that inexperienced medical student—himself—who couldn’t find a blood pressure on a man with chest pain and an aortic dissection who dies as a result. It is the tasty opening anecdote in an obituary—not for the patient but for this once valued part of being a doctor.

  The physical exam was once the centerpiece of diagnosis. The patient’s story and a careful examination would usually suggest a diagnosis, and then tests, when available, could be used to confirm the finding. These days, when confronted with a sick patient, doctors often skip the exam altogether, instead shunting the patient directly to diagnostic imaging or the lab, where doctors can cast a wide net in search of something they might have found more quickly had they but looked. Sometimes a cursory physical examination is attempted but with few expectations as physicians, instead, eagerly await results of a test they hope will tell them the diagnosis.