by Lisa Sanders
Randy tells me he was never in pain but he hated the way he became a clean slate every five minutes. He hated the worried looks he saw on the faces of those he loved. He hated the loss of a sense of who he even was.
He embraced the story that Wein put together for him. Leslie had to remind him frequently of the particulars of that story, but he remembered that he had a cancer and that curing that cancer would restore him to himself. He welcomed the surgery and never minded the pain from the incision down his chest. He even looked forward to chemotherapy. Watching the intravenous needle pierce his skin, he remembered it meant he was one step closer to getting better. I spoke with Randy several times as he faced his ordeal. His optimism never flagged. He is now disease free and his life has moved on. He returned to work five months after that strange weekend and got married the next year.
Randy’s body may have been cured by the chemotherapy, but his mind was healed by a story.
CHAPTER TWO
The Stories They Tell
At a recent conference of the American College of Physicians in Philadelphia, a friend who knew of my interest in diagnosis encouraged me to attend one lecture in particular. The title stood out from all the Updates on Cardiology and Innovations in Nephrology, Hematology, or Urology. This talk was called simply “Stump the Professor.”
When I arrived at the designated ballroom I was amazed—the place was packed with hundreds of doctors. As I picked past feet and knees to claim a rare open seat, I looked at the casually dressed, mostly middle-aged audience. There was a sense of giddy anticipation in the air, reminiscent of a college-age trek to a distant concert arena.
Finally, a tall and slender woman with a volleyball of gray curls and a broad smile strode onto the stage, nodding and smiling at her devotees. The audience exploded with applause.
This was Dr. Faith Fitzgerald, a flesh-and-blood version of TV’s Dr. House. She is the doyenne of the diagnostic dilemma. This auditorium of hundreds of doctors had come to see her take on a series of challenging cases—patients whose stories had been submitted by medical students from around the country and handpicked for this presentation because of their difficulty and complexity. The patient’s story and medical course would be presented to Fitzgerald, a bit at a time, and her job would be to figure out the diagnosis by the end. Throughout the presentation she would take the audience through her thought process, acting the modern Sherlock Holmes to her own crowd of Dr. Watsons. It was another mark of our time: diagnosis was now a form of entertainment.
After what appeared to be a completely unnecessary introduction to this crowd, Fitzgerald set her glasses halfway down her long, aquiline nose, and greeted the adoring fans. Like all good speakers, she started off with a joke—a doctor joke: “Before we get started, and just for the record,” Fitzgerald growled in her tobacco-raspy voice, “I’d like to mention—endocarditis, tuberculosis, Wegener’s granulomatosis, Kawasaki’s aortitis, Jakob-Creutzfeldt dementia, and eosinophilic gastritis.” She rushed through this list of arcane diseases and ended with a laugh. “I don’t know any of the cases I’m about to hear but there’s a darn good chance I’ve mentioned at least one case diagnosis in that list. Just so you know that I did say them.”
The crowd laughed appreciatively. In this forum, even if you don’t ultimately figure out the case, you get credit for having the final diagnosis among the diseases you considered on the way. Fitzgerald was acknowledging that the cases she would be likely to confront that day would not be the same as those doctors routinely see in daily practice. Instead they would be the “fascinomas,” the intriguing cases physicians share at the watercooler, the nurses’ station, or in hospital stairwells.
Javed Nasir, a twenty-something graduating medical student from the Uniformed Services University Medical School, walked onto the stage. He would present the first case—a patient he cared for in his third year. “Good morning, Dr. Fitzgerald.” His voice wavered slightly. He began, with what is called (by tradition) the chief complaint. “‘My wife is not acting right.’” The young man looked out at the large crowd uncertainly and then continued. “This is a seventy-three-year-old woman with a three-month history of progressive confusion, brought to the hospital by her husband.” He then detailed the patient’s symptoms in the conventional medical format.
Over the next ninety minutes these doctors watched and occasionally helped Fitzgerald work her way through Nasir’s and two other patient stories, revealing through each the internal machinery of making a diagnosis. She had never met any of these patients, had never examined them. Instead Fitzgerald made her diagnosis using a doctored-up version (quite literally) of the patient’s story. That story contained only the barest bones of the original patient’s story, stripped of all that is unique, personal, and specific, reshaped by the doctor and augmented by the physical exam findings and test results from the investigation. All this was presented in a highly structured and familiar format.
Although this is done as a kind of entertainment, a kind of brain-teaser for the audience full of doctors, it’s a simulacrum of what doctors do at the bedside. The kind of stripped-down and highly structured story on which this exercise depends is one of the most important tools doctors have for translating the abstract knowledge of the body—gleaned from cadavers, test tubes, and books—into a diagnosis of the patient before them. It is a familiar exercise to doctors because we are the authors of these stories for our own patients and audience for other doctors seeking help with theirs.
Nasir continued with his patient’s story, explaining that she had been in her usual state of health until a few months earlier, when she became increasingly forgetful. First, she began to have trouble finding the right words when she spoke. Her husband got really scared when she started to get lost driving even in her own neighborhood. At the time of her admission she was having difficulty with the most basic daily activities; she could no longer cook or even dress herself without his help. She was unwilling even to leave the house without him.
Fitzgerald is an internist, and a dean of medicine and humanities at the University of California at Davis. As the medical student told this patient’s story of rapidly worsening confusion she paced up and down the stage. Her long black coat flapped behind her, revealing slim black pants and black turtleneck—her usual attire.
An old hand at this format, she was clearly enjoying the challenge and the crowd—a mixture of old hands and novice trainees. Fitzgerald has been a regular feature at conferences like this one for more than a decade.
“On physical exam, the patient is a thin, frail woman who appeared timid and fearful,” Nasir continued.
“Timid and fearful?” Fitzgerald asked. (In the movie version, she might puff on her calabash about now.) “Hmmm. That could be part of her confusion or could be her personality. Did you get a sense of what she was like before all this?” The student shook his head. “Well, it would certainly be hard to feel confident in a world that you suddenly don’t understand.”
The rest of the physical exam was unremarkable, the medical student told her.
Fitzgerald stopped pacing. “By that I guess you mean that it was normal?” she asked.
Nasir nodded. “Even the neurological exam—completely normal?” Again he nodded. Fitzgerald was silent as she considered the story so far.
“Would you like to order some tests?” the student prompted. In this structured performance the doctor can ask for any test and if the patient had the test that data will be shared.
“Sure.” She quickly called out tests she’d like to order and the results were provided. A spinal tap was normal, there was no elevated white blood cell count, her liver and kidneys were working fine.
“So basically what you’re telling me is that we have here a woman with a rapidly progressive dementia but a completely normal physical exam otherwise and no sign of infection or laboratory abnormalities?” Fitzgerald asked. She then turned to the audience. “I am not at all offended if people shout out the answer at any t
ime,” she called out to the audience. “Anyone? Well, at least it’s not obvious to anyone else out there either.”
It certainly wasn’t obvious to me. As Fitzgerald considered the data available on the patient, she started to describe how she was thinking about what she’d heard. “At this point I like to develop some kind of structure on which to hang my ideas. To help me put together a thorough differential diagnosis, I often just start with the different areas of medicine. So, could this be some kind of congenital disease that causes dementia—like early Alzheimer’s? Maybe. Or could this be infectious? Did she have a life of adventure that would put her at risk for some colorful, sexually transmitted diseases like syphilis or HIV?”
As she reviewed her thinking, she developed a list of possible causes of these symptoms. Voices called out from the audience offering additional diseases to add to the differential. “Parkinson’s dementia” a man called from the end of my row. “Jakob-Creutzfeldt” (mad cow disease) offered a woman in front.
“Get a head CT,” called out still another voice.
“Hmmm—a head CT.” Fitzgerald considered the suggestion. “This lady has no neurological findings—right?” She turns to Nasir, who again nods his confirmation. “No weakness, no seizures, no tremor—nothing except confusion. Given that, I don’t think a CT scan will show me much. In my hospital it’s almost impossible for a patient with mental status changes to come through the ER without getting a head CT. And yet the odds are that hers will be normal, so …” She paused thoughtfully. “I say we skip it.”
Once the case had been presented completely, it was time for Fitzgerald to make her diagnosis. She went through her differential. “Well, common things being common, this would most likely be multi-infarct dementia or maybe Alzheimer’s. But this is stump-the-professor time and so it’s never the common thing. Hmmmm.” She turned to the audience. “Can I talk to a really old doctor?” Chuckles from the audience were followed by a few more suggestions.
“Any other ideas?” Fitzgerald conceded. “Okay, I give up. Let’s hear it.”
“Maybe you should have gotten the head CT after all,” quipped the medical student, pleased that he actually stumped the professor. He projected the final slide onto the large screens at the front of the room. An image from a CT scan of the head revealed a huge, white, irregularly shaped circle bulging into and distorting the familiar spaghetti swirls of the brain. It was a brain tumor.
“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 percen
t 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.