The Stories We Tell
Stories are at the heart of who we are as people. In medicine, patients tell their doctors the story of how their symptoms started and how they have progressed. They tell the story of how they feel now. We document this story in a note from the encounter that we call the “history and physical.” Some patients are great historians. They eloquently tell their story, with all the fitting details. They developed the “classic symptoms” of the disease, which were brought on by the right things. You wheeze and cough when you go out into the cold, when you are near smoke, when you exercise, but you feel normal in between episodes – you have asthma! To paraphrase Anton Chekhov’s directive for good writing: if you put a gun on the mantle in the first part of the story, it had better go off in the second, else it ought not to have been there in the first place. For these patients who are “great historians,” every “gun” placed in the beginning goes off by the end. There are no red herrings, no false foreshadowing.
But sometimes, often, the story is not so straightforward. I remember seeing a 55-year-old woman who had a history of asthma. She had presented to her primary care doctor complaining of wheezing and shortness of breath. He had given her inhalers for treatment of her asthma. They did nothing for her. He gave her different inhalers. They didn’t help either. He did what he was supposed to – he sent her to me, a pulmonologist, someone who specializes in lung diseases.
I asked her to tell me her story again. In medical school, we are taught to ask “open ended” questions to help the patient tell their story. The interaction is supposed to be a tale whose relevant details are filled out with a few questions, not the interrogation and interruptions that are typical of modern doctor-patient interactions. Not the standard history forms full of check boxes the patient fills out prior to the visit or talking to the medical assistant. Listening to the patient’s story is the most important part of what we do as doctors. We don’t just take a history and record what we hear. We shape the words into a narrative of a disease. As this woman was talking, she looked breathless and ill. She was thin, she sat on the chair leaning forward, speaking only a few words between breaths.
The most important part of the physical exam is what we glean before we utter a word. This part of the exam informs us of the reliability of the narrator and the severity of illness. It provides a context for the rest of the story. She did have a history of asthma for many years, she confirmed. Before the past six months, though, she hadn’t even used inhalers every day. The shortness of breath and wheezing she was currently experiencing was much worse than anything she had during asthma episodes before. During those episodes she could tell her breathing improved after a single puff, while this time she didn’t notice any difference with any of the inhalers.
She felt short of breath all the time: the episodes didn’t resolve to a point where she felt normal in-between. She was short of breath just walking to the bathroom, she told me. Framed this way, even a lay person could tell that the story wasn’t fitting quite right for asthma. There were too many things that didn’t add up. But if not asthma, then what? Or if it is asthma, why is it not responding to the treatments now?
Once patients tell us their narrative, we ask more questions. The problem with most of our patients’ stories, is that the patients don’t know what will happen in the second act. Without an omniscient narrator, it’s difficult to follow Chekhov’s directive of good writing. This is where we come in as doctors: to tell them what the second act will be. They do not know what part of their story is the gun over the fireplace and what part is simply the distracting vase on the mantelpiece. It is our job to help them figure that out. There are lots of potential guns and as we ask more questions precisely so that we can figure out which one is the most likely to go off.
Shortness of breath, and wheezing for that matter, is a fairly nonspecific symptom. We hone in on which possible diagnoses deserve our consideration. Someone who appears ill and is not responding to asthma medications may well have other, more serious diagnoses. Could she have congestive heart failure with fluid backing up in her lungs? A chronic lung infection? Some kind of cancer – either spread to her lung or coming from the lung? I didn’t know, I’d have to ask her.
She said she felt more short of breath lying flat. She was now sleeping on three pillows, this was new in the last few months. She woke up at night short of breath. She didn’t have swelling in her feet and hadn’t gained any weight. Some of these symptoms fit for congestive heart failure and some didn’t, and why would a 55-year-old woman with no prior heart history have congestive heart failure anyway?
She coughed occasionally, but didn’t cough anything up. She didn’t have fevers or chills. But she did have night sweats and had lost about twenty pounds in the past month. No one else at home was sick. And yes, as a matter of fact someone had given her antibiotics over the past six months for her symptoms, and no, it didn’t make a lick of a difference. Her story didn’t seem to fit with infection either.
The night sweats and the 20-pound weight loss were a red flag. Yes, she didn’t have an appetite, she felt weak and tired, her disease had been progressing. If cancer, then where? No, she hadn’t had a colonoscopy but she had no change in her bowel habits, no blood or constipation. She hadn’t had a mammogram this past year, but all previous mammograms were normal and she hadn’t felt any breast masses or any other swelling or lumps anywhere else. And yes, she had smoked for about twenty years, one pack per day, and quit about ten years ago after a bad case of bronchitis.
As we progress with the exam and review prior studies, we narrow our differential diagnosis and pinpoint what tests we think would help us most in figuring it out. She was wheezing, it’s true, but only on the left, and she didn’t have good breath sounds on that side. The right side had no wheezing, the asymmetry of symptoms further moved us away from the asthma diagnosis. She didn’t have swelling of her legs or hands, no palpable lymph nodes. I deferred a breast and rectal exam. People aren’t used to undressing for their lung doctors, though it was a decision that came with a small chance of missing a breast or a rectal mass – two common types of cancer.
She needed a chest X-ray, I thought. Lung mass, metastatic cancer, fluid and even pneumonia or other inflammatory problems would be visible there, whereas a chest X-ray ought to be normal in asthma.
In the end, her X-ray showed complete collapse of her left lung and the space was full of fluid. She had the fluid drained and it confirmed a diagnosis of lung cancer, stage IV, meaning it had spread to the lining of the lung and the pleural fluid, the fluid around the lung. She didn’t have a long time to live, but we could treat the lung mass that was obstructing her airways and causing lung collapse and severe shortness of breath. We could tell her that it wasn’t that she was anxious or not using the inhalers correctly, or going crazy. She had cancer. Oh, and probably asthma as well based on what she said previously, but asthma wasn’t the cause of her symptoms now.
This kind of re-evaluation happens all the time. It happens because the doctor is no more omniscient than the patient in knowing what the second act will bring. It might seem scary, but nothing we do in medicine is 100% certain. Even the most definitive of the medical tests, a biopsy, doesn’t always give us an answer. It can often be consistent (or not) with a diagnosis rather than being diagnostic, or pathognomonic of something specific. In the broad settings – the primary care office, the emergency room – we ask enough questions to come up with something reasonably likely, to reasonably exclude emergent or lethal problems. Then we give it our best shot at treatment.
When someone doesn’t respond to our treatment, we need to consider whether the diagnosis is correct, or whether the disease is resistant to treatment. It is the question of whether we have the diagnosis right, that is hardest to answer. Often we assume we have the diagnosis right and we have a “quick question” for our friend, the specialist, to see how to treat a resistant/refractory case of asthma. But it is the re-taking of the history that usually yields the answers. The quick question is easy to answer, but alas, it is often the wrong question. In the interval, the patient’s story has changed too. She now has thought of different things that might be important and new symptoms have developed. Things she assumed were irrelevant before seem more bothersome now. It doesn’t seem like it’s asthma to her either at this point.
This is why the re-taking of the history is crucial. It is through the listening to a story, with fresh eyes, and systematic evaluation of other possibilities, that we can re-shape the narrative. This is how we turn the focus back to right gun on the mantle, the one we now know will go off.