It was past midnight in the ED, and she was writhing on the bed, palms clutched over her abdomen. I pulled up a stool, notebook, and pen in hand. I was ready to listen to Mrs. Walker’s story. But I also felt a sense of dread rising: From a quick chart review, I knew that Mrs. Walker had 23 negative CT scans for abdominal pain within the last 18 months. Her labs and vital signs were consistently normal.
“Mrs. Walker, when did you first notice this pain?” She wasn’t sure.
“Where does it hurt the most?” Mrs. Walker moved her palms over the right side of her abdomen, then the left side. She noted that the pain was sometimes sharp and sometimes dull.
The encounter continued like this for several minutes. The ambiguity of her answers disheartened me. This is not going to be a great presentation, I thought. I quelled my irritation, uncrossing my legs and channeling empathy into the murky space between us.
Now, at the cusp of completing Columbia University’s Masters in Narrative Medicine, I know that it’s not enough to respond with patience and empathy to a patient’s disjointed story. We must fundamentally change the way we receive stories of illness.
What I would ask Mrs. Walker now, if I could:
What are you most worried about?
What has this pain stopped you from doing?
In what ways has it shrunken your world?
In what ways has it upended your sense of time?
Phenomenology, a branch of philosophy centered on the lived experience, would be invaluable to medical school curricula. Merleau-Ponty, Husserl, and others emphasized that the body is more than a familiar object; our body is the framework that structures our existence in the world. It is the point from which we perceive, think, and act. For this reason, bodily breakdown in illness can drastically alter the way we exist. For instance, illness can shrink our world (the physical inability to climb stairs), which can lead to social isolation (the inability to meet up with friends); it can make it hard to predict the future (how much longer will my oxygen tank last?) which limits the possibilities available to us. Only the patient can speak to their particular experience and the treatments that will best address how their world has broken. Phenomenologist Kay Toombs writes that an important part of healing is having the patient’s own role as knower valued: “If therapeutic intervention is concentrated solely on the dysfunction of the biological body, with little attention paid to the disturbance of lived body, [the patient] feels himself reduced to a physical object, and consequently dehumanized.” Modern medicine’s ability to gather quantitative measures of illness has unquestionably brought us far. But our fetishization of objective data over subjective ways of knowing has come at a cost.
Patients’ feelings of dismissal by providers is a rapidly growing problem. A 2019 study found that patients were interrupted after a median of 11 seconds, about as long as it takes to sing Happy Birthday, once. The same study found that patients were asked why they presented for care only 36 percent of the time (this percentage grew to 49 percent in primary care clinics and dwindled to 20 percent in specialty care settings). Which begs the question, who exactly is the clinical encounter aimed to serve? Moreover, a 2014 study found that at least 1 in 20 US adults treated in an outpatient setting are misdiagnosed. In primary care clinics, as many as 1 in 5 patients unexpectedly return for care. We aren’t very good at asking for the story. We aren’t very good at listening. Even when we ask for the story and listen, we aren’t always right. “Facts” in medicine continually change. Objective data is not static.
As we restore value to the patient’s subjective ways of knowing, we must not forget that the structure of a patient’s narrative – what they choose to share first, what they avoid saying, what they emphasize multiple times – is itself data. Yet medical education numbs us to these nuances. From the onset of medical training, we are asked to “present” the patient interview in a standardized way: Patient’s name, age, relevant past medical history, chief complaint, events leading up to presentation in chronological order, including symptom onset, location, duration, quality, alleviating/exacerbating factors, etc. As a fourth-year medical student, I have never encountered a patient whose story unfolded in this order (including physician-patients). But this is what we probe and listen for, at near exclusion. What violence does this do to the way we listen to our patients? What do we miss when we enter a clinical encounter with a template to fill?
Of today’s patient charts, Dr. Rita Charon, founder of the discipline of narrative medicine, writes: “As the free space for narrative prose diminishes in our checklisted and templated electronic medical records, our waning ability to register the aspects of care that exceed the technical may preclude our very experiencing of them, perhaps impoverishing the care overall.” Our prioritizing of the technical, or objective, leaves less time, energy, and space to address the patient’s lived experience of illness. But we need to listen for words like think and fear, and hope in the clinical encounter. And we need to record words like think and fear, and hope in our documentation. Because if we are driven to document our patients’ complexity, then we will likely listen for it too.
It’s true that restoring value to the patient’s subjective experience and documenting this knowledge won’t be enough to repair the chasm that has opened between patients and providers. This work must occur concomitantly with systemic change: For instance, with the expansion of appointment time slots in outpatient care and a dramatic decrease in the amount of superfluous documentation required of providers. Importantly, educators should give prominence to medical humanities topics, including phenomenology, in medical school. Our health depends on it.
Laila Knio is a medical student.
Image credit: Shutterstock.com
