Every Patient Tells a Story (3 page)

Still, the fear of getting it wrong is always present for both doctors and patients. As a result, there is a new and growing interest in better understanding diagnostic errors in medicine. The first-ever conference on the topic—one of the earliest signs of growing research interest—was held in Phoenix in 2008. And the AHRQ, the government agency charged with improving the quality of health care in this country, offered its first grants for research on the topic in the fall of 2007.

Research into diagnostic error, like research into the diagnosis process itself, is still a very new field. There is even difficulty in deciding what constitutes a diagnostic error. What a thoughtful patient may consider an error is not necessarily the same as that which his equally thoughtful doctor might consider an error.

For example, when a patient comes to my office with a sore throat and a fever, I might check for strep, and if it’s not present I’ll probably send him out with a diagnosis of a viral illness. But I share with all such patients what I expect to happen over the next few days—that they should start to feel better within a day or two. And if not, I tell them to call me and let me know. Because, while the odds are overwhelming that this is simply a viral syndrome, it’s not 100 percent certain. I might be wrong. The test might be wrong. It might be mono. It might be some other kind of bacterial tonsillitis. It might be cancer.

I can’t just check under the hood and see if the spark plugs need to be replaced—the way a mechanic diagnoses the funny noise your car is making. Instead, I have to listen to the engine and, based on the indirect evidence I can collect, make a thoughtful and well-informed guess as to what is
probably
going on.

If I send that patient home with a diagnosis of a viral syndrome and he doesn’t get better and has to come back, would that be a diagnostic error? I suspect the patient would think so. And certainly it wasn’t a correct diagnosis. But did I make an error? Should I have done something different?

I could have been more certain. I could have sent my patient to an Ear, Nose, and Throat specialist who could have looked down his throat with a special scope. I could have even asked for a biopsy of the red and swollen tissue to confirm my diagnosis. That would be time-consuming and painful for the patient and ridiculously expensive. But even then, the diagnosis would not have been 100 percent certain. In medicine, uncertainty is the water we swim in.

The chance of being wrong is overwhelming when dealing with something more complicated than a sore throat. Doctors—far more than the patients they care for—recognize that some error is inevitable. From the first moment a doctor sets eyes on a patient, she begins to formulate a list of possible causes of the symptoms—what’s known as a differential diagnosis. As the story emerges, that list is modified—diseases on the list disappear to be replaced by new ones that more closely adhere to the patient’s story, or exam, or sometimes test results. By the end of the encounter the doctor has a list of likely suspects.

If the doctor has worked through the problem well, there’s a very good chance that one of these possible diagnoses will be right. The rest though, by definition, will be wrong. We are regularly wrong in the pursuit of being right. It’s important to have a list of possibilities because medicine is complicated and diseases and bodies differ. We frequently have a diagnosis that we consider most likely, but we’re taught also to come up with a plan B because our patients don’t always have the most likely disease. The question we are taught to ask ourselves is, if it isn’t that, what else could it be?

As a collector of diagnostic stories, I find myself frequently asking why one doctor was able to make the diagnosis when others before her couldn’t. Where were the errors? How were they made? What can we learn?

Sometimes the problem is a lack of knowledge. This was certainly the case in Crystal Lessing’s story. She had a rare presentation of an unusual disease. One of the human limitations in medicine is that no one can know everything.

There were errors in thinking in Crystal’s case as well. Recognizing that the fundamental problem was liver failure was an essential step in Walerstein’s thinking process—a realization that eluded all of the doctors who had seen her initially.

There were also mistakes in some of the data collected from the patient. Walerstein noted that the patient’s “bloody diarrhea” consisted of a couple of episodes of bloody stools the day she came to the hospital. And Walerstein was also the first to note the enlarged and tender liver when he examined the young woman—a hint that the organ wasn’t as normal as the blood tests suggested. Abnormalities uncovered by testing were also not interpreted correctly. Crystal’s jaundice was initially attributed to the destruction of the red blood cells. Yet when further testing revealed that this red-blood-cell massacre was not the result of an abnormal immune system improperly attacking the cells, Walerstein was the first to consider other causes of red cell destruction. Research suggests that diagnostic errors—like this one nearly was—are often due to a multitude of missteps made along the way.

The solution to this case, as with so many cases, lay in the proper use of all the tools we have at our disposal. Walerstein took a careful history, performed a thorough physical examination, and identified the important lab abnormalities. Only then was he able to connect the information about that patient with the knowledge he had to make the diagnosis. Only then did the pieces of the puzzle come together.

In telling you these stories I try to put you, the reader, in the front line, in the shoes of the doctor at the bedside—to know that feeling of uncertainty and intrigue when confronted with a patient who has a problem that just might kill him. I try to show you the mind of the physician at work as she struggles to figure out exactly what is making the patient sick. To do this I
have divided this book according to the steps we take in the evaluation of each and every patient we see. Each chapter focuses on one of the tools of our trade, how it’s supposed to work, and how errors send us astray. As physicians become more open about what we do, we make it easier for patients to understand what they can do to more fully participate in their own care.

This book has its roots in a column I have written for the past six years for the
New York Times Magazine
. The column has been my opportunity to share with general readers my personal collection of fascinating diagnostic histories. It’s a collection I began (unwittingly) to assemble years ago, while my own medical career was still in its formative stages.

I came to medical school as a second career. The first I spent in television news, mostly covering medicine, mostly for CBS. I hadn’t planned to go to medical school; it wasn’t some long deferred dream. But one day, while filming with television correspondent Dr. Bob Arnot, I watched him save an elderly woman’s life. He was supposed to be shooting a stand-up on whitewater rafting when he suddenly disappeared from the raft I was watching in the monitor. The cameraman and I searched the distance and saw him on the banks of the river, pulling an elderly woman onto the rocky shore. The cameraman refocused on this new image and I watched with fascination as Bob performed basic cardiopulmonary resuscitation (CPR) and brought the nearly drowned woman back to life.

I didn’t quit television right then and there and head off to medical school, but it planted an idea and revealed a hidden dissatisfaction with my role in TV. Television reaches millions, but touches few. Medicine reaches fewer but has the potential to transform the lives of those it touches.

So I did two years of premed at Columbia University, then applied and was accepted at the Yale School of Medicine. I completed my residency training at Yale’s Primary Care Internal Medicine program and have stayed on here to care for patients and teach new generations of doctors.

When I started medical school I thought I would be most interested in pathophysiology—the science behind what goes wrong when we get sick.
And, in fact, I loved that subject and still do. But what captured my imagination were the stories doctors told about their remarkable diagnoses—mysterious symptoms that were puzzled out and solved. These were the stories I found myself telling my husband and friends at the dinner table.

Covering medicine for as many years as I had, I thought I understood how medicine worked. But these stories revealed a new aspect of medicine—one well known to doctors but rarely discussed outside those circles. In writing my columns and now this book, I try to share a face of medicine that is both exciting and important. Exciting because the process of unraveling the mystery of a patient’s illness is a wonderful piece of detective work—complicated yet satisfying. Important because any one of us might someday be that patient. The more you know about the process, the better you will be prepared to assist and understand.

CHAPTER ONE
The Facts, and What Lies Beyond

T
he young woman was hunched over a large pink basin when Dr. Amy Hsia, a resident in her first year of training, entered the patient’s cubicle in the Emergency Department. The girl looked up at the doctor. Tears streamed down her face. “I don’t know if I can take this any longer,” twenty-two-year-old Maria Rogers sobbed. Since arriving at the emergency room early that morning, she’d already been given two medicines to stop the vomiting that had brought her there—medicines that clearly had not worked.

“I feel like I’ve spent most of the last nine months in a hospital or a doctor’s office,” Maria told the doctor quietly. And now, here she was again, back in the hospital. She’d been perfectly healthy until just after last Christmas. She’d come home from college to see her family and hang out with her friends, and as she prepared to head back to school this strange queasiness had come over her. She couldn’t eat. Any odor—especially food—made her feel as if she might vomit. But she didn’t. Not at first.

The next day, on the drive back up to school, she’d suddenly broken into a cold sweat and had to pull over to vomit. And once she got started, it seemed like she would never stop. “I don’t know how I made it to school because it seems like I had to get out of the car to throw up every few minutes.”

Back at school she spent the first few days of the semester in bed. Once she was back in class her friends joked that she was just trying to get rid of
the extra pounds from the holidays. But she felt fine and she wasn’t going to worry about it.

Until it happened again. And again. And again.

The attacks were always the same. She’d get that queasy feeling for a few hours, and then the vomiting would start and wouldn’t let up for days. There was never any fever or diarrhea; no cramps or even any real pain. She tried everything she could find in the drugstore: Tums, Pepcid, Pepto-Bismol, Prilosec, Maalox. Nothing helped. Knowing that another attack could start at any moment, without warning, gnawed insistently in the back of her mind.

She went to the infirmary with each attack. The doctor there would get a pregnancy test and when it was negative, as it always was, he’d give her some intravenous fluids, a few doses of Compazine (a medicine to control nausea), and, after a day or two, send her back to the dorm. Halfway through the semester she withdrew from school and came home.

Maria went to see her regular doctor. He was stumped. So he sent her to a gastroenterologist, who ordered an upper endoscopy, a colonoscopy, a barium swallow, a CT scan of her abdomen, and another of her brain. She’d had her blood tested for liver disease, kidney disease, and a handful of strange inherited diseases she’d never heard of. Nothing was abnormal.

Another specialist thought these might be abdominal migraines. Migraine headaches are caused by abnormal blood flow to the brain. Less commonly, the same kind of abnormal blood flow to the gut can cause nausea and vomiting—a gastrointestinal equivalent of a migraine headache. That doctor gave Maria a medicine to prevent these abdominal “headaches” and another one to take if an attack came anyway. When those didn’t help, he tried another regimen. When that one failed, she didn’t go back.

The weird thing was, she told Hsia, the only time she felt even close to normal during these attacks was when she was standing in a hot shower. Couldn’t be a cold shower; even a warm shower didn’t quite do it. But if she could stand under a stream of water that was as hot as she could tolerate, the vomiting would stop and the nausea would slowly recede. A couple of times she had come to the hospital only because she’d run out of hot water at home.

Recently, a friend suggested that maybe this was a food allergy, so she gave up just about everything but ginger ale and saltines. And that seemed to work—for a while. But two days ago she’d woken up with that same bilious feeling. She’d been vomiting nonstop since yesterday.

Maria Rogers was a small woman, a little overweight with a mass of long brown hair now pinned back in a barrette. Her olive skin was clear though pale. Her eyes were puffy from crying and fatigue. She looked sick, and was clearly distressed, Hsia thought, but not chronically ill.

How often did she get these bouts of nausea? she asked the girl. Maybe once a month, she told her. Are they linked to your periods? Hsia offered hopefully. The girl grimaced and shook her head. Are they more common just after you eat? Or when you’re hungry? Or tired? Or stressed? No, no, no, and no. She had no other medical problems, took no medicines. She was a social smoker—a pack of cigarettes might last a week, sometimes more. She drank—mostly beer, mostly on the weekends when she went out with her friends.

Her mother had been an alcoholic and died several years earlier. After leaving college she had been living with her father and sister but a few months ago moved into a nearby apartment with some friends. She had no pets, had not traveled within the past year. Had never been exposed to any toxins as far as she knew. Hsia examined her quickly. The gurgling noises of the abdominal exam were quieter than normal and her belly was mildly tender, but both findings could simply be due to the vomiting. There was no sign of an inflamed gallbladder. No evidence of an enlarged liver or spleen. The rest of the exam was completely unremarkable. “As I walked out that door,” Hsia explained to me, “I knew I was missing something but I had no idea what it was. Or even what to look for.”