The belly pain is so bad that Mrs. Alves*, a woman in her 40s, is worming uncomfortably on the ER stretcher. “I need an answer,” she says. I promise her that pain medicine is on the way. What I can’t promise her—despite countless tests and specialists’ opinions already on record—is the definitive answer. The diagnosis, the root cause of her symptoms, proves elusive. But her distress is real. And when there’s distress, there’s a story.
To be an emergency physician for nearly 30 years is be humbled again and again by the mysteries of the body and the humans inhabiting them. Mrs. Alves is one of an endless number of patients I’ve seen with the urgent need not just for a diagnosis or treatment of some kind, but to be heard, to have an ear turn its clinical attention to their story.
Stories are not just listened to, they’re constructed, and both tellers and listeners are part of the process. And yet, discussions around doctor/patient communication ignore this fundamental truth.
Healthcare stresses evidence-based practice, clinical decision-making informed by well-designed research studies. However, it’s less interested in scholarship that complicates this paradigm. Knowledge is tied to belief, and the greater our confidence in our beliefs, the more likely we’ll consider it knowledge. Our confidence in our beliefs, experts say, depends less on the quality of the evidence than the coherence of the story constructed in our minds.
The best evidence-informed decisions are useless, if not dangerous, unless we first get the patient’s story right.
In healthcare professionals’ training, a patient’s story is generally shorthand for a medical history—current and past symptoms, medical and surgical problems, and social history. But a medical history isn’t the same as the patient’s story. A detailed description of symptoms can still miss the deep troubles and unspoken needs plaguing a particular person at a specific moment in their life.
I was taught that my job as a doctor was to find the patient’s story—this solid, complete entity—and bring it back by listening diligently, paying attention, and being present. Important practices, but they ignore a central challenge of working with stories—they’re less like polished jewels and more like first drafts.
Patient stories, like all stories, are created out of fragments of information. Deciding which details to include and what to leave out is daunting for writers blessed with quiet and time to revise. Imagine an ER patient in that pressured moment, surrounded by loud noises and strangers, expected to describe experiences that can be complicated, frightening, and embarrassing—and not knowing which details are relevant to their problem and which aren’t.
When we’re listening in this moment and others, doctors are not just receiving information. We’re continuously sorting, prioritizing, and interpreting fragments to create an orderly and coherent narrative. We’re making micro-decisions about which details might be relevant to the problem and discounting others. And our story-making brains don’t need much to construct a believable reality.
This tendency is demonstrated in a well-known 1944 social psychology study. Researchers Fritz Heider and Marianne Simmel showed subjects a simple animated movie where a large triangle, a small triangle, and a circle moved in and out of an opening and closing rectangle. Then, they asked research subjects to describe what happened. Respondents took these inanimate shapes and described drama, bullying, jealousy, and romance. Only one person told what their eyes observed—geometric objects moving about a screen.
When I played this film for my students, they created confident, specific, and even passionate narratives: a lesbian love story with a disapproving father, a terrified mother and child escaping from an abuser, children’s playground dynamics.
They laughed uneasily, as if catching their mischievous minds in the act. They also learned how subjectivity, assumptions, and their own personal histories contribute to the construction of an apparent objective experience. I illustrated the point with my own narrative mistakes, like the one I made with an uncooperative man with severe back pain and a history of opioid use disorder. I suspected drug-seeking behavior. I thought my words respectful and unbiased, but we began to knock heads. Then, he told me about how he was in recovery, and desperate for other types of treatment to control his pain. He was finally back at work and didn’t want to lose this job. He went on to explain how he could tell from the tone my colleagues and I used that we came into the room with a story fixed in our heads. And to my shame, he was right.
For all the attention given to medical harm in hospitals, or instances where patients felt their needs went unheard by clinicians, doctors rarely examine these situations as narrative missteps.
Narrative is defined in various ways, including a report of connected events and chronology with meaning. A more expansive interpretation draws on the word itself, which is derived from the Latin narrare, which means “to tell” or “to know,” and invites us also to consider narrative’s capacity for knowledge production. Sometimes, the narrative the patient wants us to hear is what’s unsaid. But physicians are poor at picking up on these cues.
Take the older patient who presents to the ER after a fall. The physician asks about the circumstances, including why he fell, his history with falls, and possible injuries. She learns he’s not eating or drinking. He’s not getting around like he used to. He lives alone. She could stop there and move on to the physical exam. Or she could keep him talking.
Studies show that patients may cue their negative emotions or their real concerns indirectly. In this case, the man’s family lives out of state, his wife recently died, he’s been grieving, and he won’t leave the apartment that holds a lifetime of memories. He’s not eating because getting up and down the two flights of stairs is not as easy as it once was. This proud man wearing a Navy cap won’t offer up these details, but his vulnerability unspools once he’s asked.
Patients want their physicians to ask questions. Unfortunately, health providers often respond by focusing on logistical or biomedical issues. By neglecting emotional communication, we miss opportunities to express empathy.
Such behavior is often attributed to time constraints, but research shows that when we pick up on patients’ often quiet or even silent cries for help about psychological or social issues, time is often saved.
When we work with stories and recognize the different ways they are constructed and communicated, we begin to appreciate not only their power but their fragility. For patients to tell their stories, they must first overcome the vulnerability that results from admitting fears and insecurities, new frailties, and limitations. And as physicians reaching branch points in the conversation, we must be sensitive to the presence of other directions the narrative might go, and how and why we might be motivated to steer it down a particular path. Is this path safer, or clearly marked, leading to an identifiable destination?
We must be willing to interrogate our story-building process as rigorously as our research methods. What stories are we listening for, what assumptions or beliefs are we bringing into the story, and how are these value judgments influencing the stories we hear?
As I listen to Mrs. Alves crying for an answer, my first instinct is to order more labs and diagnostic imaging. Instead, I take a seat, and ask her not only to describe her pain but the experience of being in pain, and what distressed her enough to come to the ER. She tells me about the specialists who won’t call her back or dismiss her symptoms when tests come back normal. Her doctor is hard to reach. Besides, he thinks it’s all in her head. What she wants from them is what she desires from me: someone willing to listen for a few minutes, who will be curious about the pain, but more importantly, appreciate how it’s disrupted her life. Quality and compassionate patient care are only possible when the physician and patient work from the same story.
*The names in this piece have been changed.