Let’s consider Jill L, a well-dressed woman who comes to a busy, inner-city ER late one Saturday night with vague symptoms that include chest pain and shortness of breath. She’s easily the best-dressed and best-smelling person in the entire ER, and that includes the staff. The young ER doc isn’t that concerned about anything serious at first, but something doesn’t sit right, and he returns several times to clarify her symptoms. He’s left with little to latch onto except chest pain and shortness of breath, so that’s where he goes.
Could this be a possible heart attack? It’s unlikely. She’s in her mid-thirties with no cardiac risk factors. Maybe a blood clot shot to her lung? The workup stretches through the night, and yet she sleeps undeterred by the tumult around her. When daylight comes, and he apologizes for being unable to find an explanation for her symptoms, she knuckles sleep from her eyes, offers a smile, and says how much she appreciates his efforts.
The young ER doc is diligent, courteous, and devoid of any imagination. He never thinks to ask why? Why did this impeccably dressed woman change obvious evening plans to come to this ER at this time of night for what sounds like vague concerns, when there is nothing vague about her? Her eye-catching diamond ring and wedding band didn’t spark questions. Sleeping alongside these grumpy, snoring strangers on an uncomfortable stretcher seemed preferable to curling up at home in her comfortable bed with her spouse or partner, who isn’t here.
If he’d asked, she might have told him the real reason for her visit—hours earlier, before all the testing. For years, she’d endured physical and emotional abuse from her husband, and she’d finally, finally had enough.
The doctor who rushed to find the answer rather than acknowledge the nagging uncertainty, who chased her symptoms but failed to engage with the landscape of her story, was a young me at the start of my medical career.
Not-knowing asks that physicians think more like artists, those who are experts in the practice of uncertainty, and focus more on process.
In his book A Fortunate Man, a portrait of a country doctor in rural England, John Berger writes: “Landscapes can be deceptive. Sometimes a landscape seems to be less a setting for the life of its inhabitants than a curtain behind which their struggles, achievements, and accidents take place.”
Berger challenges our common understanding of landscapes. He provokes the reader to consider how we navigate these physical and emotional spaces, this magnificent, mysterious, and sometimes treacherous terrain hidden from others or unrecognizable as a space that requires attention. I believe these challenges aren’t commonly addressed in medical training, because they require a critical concept that one might consider antithetical to medical practice— “not-knowing.”
I borrowed this notion of “not-knowing” from the writer Donald Barthelme’s essay of the same name. In this essay, Barthelme describes the act of writing, and the creative arts in general, as a process of dealing with not-knowing. The writer is someone who, when embarking upon a messy task, doesn’t know what to do. Problems are crucial to not knowing, and not-knowing is crucial to art. Embracing problems is not only critical to the creative process, Barthelme states, but the seriousness of the artist is defined by the seriousness of the problems they take on.
Working with patient stories is a creative investigation. It requires a sensitivity to what’s missing in the landscape or what’s hidden. From the position of “not-knowing” we remain open when symptoms don’t make sense and find comfort in that openness. It sounds counterintuitive, but we need more not-knowing because medicine has an uncertainty problem. In 1989, Dr. Jerome Kassirer, former editor of the New England Journal of Medicine, wrote, “Absolute certainty in diagnosis is unattainable, no matter how much information we gather, how many observations we make and how many tests we perform.”
Uncertainty is a cognitive challenge that’s felt in the body, and it doesn’t feel good. Personally, uncertainty can feel like anything from a mild allergic reaction to a panic attack. A quick fix for the discomfort that comes with uncertainty is certainty—or at least its pretense. Under the pressures of clinical practice, our instinct is to reach for more data, which usually means more diagnostic testing. Today, medicine doesn’t suffer for a lack of knowledge. Researchers do an impressive job of generating data. One study reported that seventy-five clinical trials and eleven systematic reviews are published every day. But such abundance poses challenges, including keeping up, making sense of it all, and separating the signal from the noise.
The ability to welcome uncertainty as a place of unfolding possibility is a critical part of doctoring.
So majestic are these mountains of information, the limitations are not immediately apparent. The problem isn’t uncertainty, per se, but the clinician’s relationship to it. As we saw with Jill L, more data doesn’t promise more certainty if it’s in the service of the wrong questions. Even the best data gleaned from studying populations of patients is helpful only once I’ve defined the problem for which this data applies.
It can be the wrong tool for providers unprepared for the complexity, ambiguity, instability, and value conflicts that are often the source of real anxieties in medical practice. A strict focus on data can even be dangerous if it blinds us to other lines of inquiry, and distracts us from wading into other forms of data buried in stories. Taking this path into stories never encountered before can be a source of discomfort, too. It doesn’t promise answers, but it’s often the only chance for us to discover the very thing we didn’t know we were looking for.
Barthelme writes about how problems present opportunities to push our thinking into unanticipated directions; without problems, there would be no invention. With Jill L, I felt stuck, which produced a boxed-in panic because being stuck in medicine can imply failure. This message was drilled into me early in my medical training. A fourth-year medical student shared this bit of wisdom at the beginning of my third-year clerkships that he learned from his previous year on the wards: “You can be wrong, but never in doubt.”
Through the lens of not-knowing, we have permission to be stuck. We welcome being stuck. It might be the only clue that we’re onto something, our inner alarm system quietly screaming for us to pay attention.
Developing comfort with uncertainty is hard when physicians are incentivized for having the answers, not for owning up to what they don’t know. Outcome metrics don’t reward physicians for not-knowing. However, when there’s a disconnect between the stories we tell and stories people experience, and a patient’s deepest troubles are often found between the lines, in the silences and oblique language that signals evasion, fear, or mistrust, the ability to sit with uncertainty must be encouraged and valued.
I wasn’t comfortable admitting my confusion to Jill L, to confess all that I didn’t know. How did I change my focus and learn about the real reason for Jill L’s visit? I didn’t. She took pity on me, or so I believe. In the morning, before discharging her home, I asked whether there was anyone we might call to come to get her. She made a passing comment about not wanting to contact her husband. Even I picked up on that elliptical phrasing—what she wasn’t saying but wanted me to hear. She swung the door wide open as far as it could go, and all I had to do was curl into a ball of shame and roll inside.
Not-knowing begins with a solid foundation of medical knowledge. Without that, it’s hard to know what you don’t know.
Not-knowing should not be confused with ignorance. It’s not lack of knowledge or poor application of knowledge. I should know the correct antibiotics for treating hospital-acquired pneumonia. I better have a ruptured aortic aneurysm in the forefront of my mind when considering an older patient with the sudden onset of abdominal pain. Not-knowing begins with a solid foundation of medical knowledge. Without that, it’s hard to know what you don’t know.
Not knowing is a muscle that can become stronger and stabilized only through training and interrogation of our thinking process, starting with the decisions we make even before we think we’re making decisions. For example, why do we choose specific details in a patient’s story to focus on—like chest pain and difficulty breathing in Jill L’s case— and not others? The story I created about Jill L was very different from the one she was telling.
A richly documented history of symptoms and past medical problems can still miss the troubles and needs plaguing a particular person at a moment in their lives. Listening to a story is a different exercise than listening to a patient’s symptoms. It requires many of the same muscles as creative writing. When writing stories, you move into what Eudora Welty calls “open spaces.” You’re aware of characters, the choices they have to make, and how the stakes can amplify very quickly. You’re also sensitive to the narrative directions not taken. The elements that don’t belong or make sense. The dialogue that takes you by surprise. By thinking this way with Welty’s open spaces, the physician can resist the urge to impose the wrong structure, a false ending, or yield a quick judgment.
Looking back, I recognize how much of my conversation with Jill L was subtext, and I hadn’t paid attention to was between the lines, the gaps in her story. Not only didn’t I know where to look, I wasn’t savvy enough to realize there was a curtain behind which I had to look. Patients don’t always share their grave concerns directly. They’ll tell stories and expect physicians to probe and pick up on their feelings of fear, anger, or anxiety and ask them questions.
Story isn’t the vehicle toward a diagnosis, it’s the destination. And when a patient’s story becomes unwieldy or doesn’t point to an obvious solution, it’s easy enough to engage with patients at the level of story. “I understand, you have chest pain, your stomach hurts, your feet tingle, you’re weak and tired, you have headaches and body aches, you have a rash that went away, your stomach is bloated, and your urine smells strange. Take me through your day today, and what you were doing and what exactly was bothering you that made you say enough, I have to go to the ER.”
Narrative is an “invitation to problem finding, not a lesson in problem solving,” says the narrative scholar Jerome Bruner. “It is deeply about plight, about the road rather than about the inn to which it leads.”
Story is about trouble. Something has gone awry. And isn’t that why people are so interested in stories about illness? What’s gone awry isn’t only our bodies. There are other threats in play: our identity, our relationship with our bodies, our conception of ourselves, and our relationships with others. A common thread that runs through various unrelated complaints is a patient’s fear of losing control. Story provides a landscape where they can express and validate their experiences.
For all the pronouncements about technological innovation disrupting and transforming medicine, I believe the platform of story—patients telling stories to physicians and physicians telling stories back to patients—is a powerful tool for dealing with a critical challenge in medicine—working through uncertainty. Without story at its core, medicine can’t practice responsible, evidence-based care.
Without story at its core, medicine can’t practice responsible, evidence-based care.
So how do we cultivate a physician’s comfort with uncertainty? In practical terms, not-knowing asks that physicians think more like artists, those who are experts in the practice of uncertainty, and focus more on process. Making art reflects our beliefs and how we think about the world. Whatever is produced represents an accounting of our mind at work. Process receives less attention in medicine than outcomes. Outcome measurements are important, but I fear that the emphasis on results has diminished the value of other practices foundational to medicine but harder to quantify.
We’d like believe we’re savvy to what’s going on in our minds, that our decisions are a linear string of conscious thoughts. However, my impressions and beliefs often appear out of the dark quiet, a product of insecurities as much as reason. I must recognize when there are curtains and find methods for throwing them back.
Barthelme writes about the purposes of art, but he speaks to our work in medicine, too: that art is a true account of the activity of the mind; art thinks ever of the world; and art’s project, ultimately, is to better the world. This is a difficult task, but taking on this challenge appeals to the seriousness of the artist in all of us, especially when we’re wearing a white coat.
When I was caring for Jill L, I was aware of the prevalence of interpersonal violence (IPV), how it permeates all socio-economic classes. Screening for IPV wasn’t standard back then, but I knew many victims present with vague complaints, that they often visit a healthcare setting multiple times before their troubles come to light. I was well aware that a significant percentage of victims won’t come forward on their own, but will open up when asked directly by clinicians. My problem wasn’t “knowing” but “not-knowing”: failing to recognize the landscape and the importance of traveling it.
Imagination is necessary to understand another human, not only what’s going on in their story but also what could or should be. My growth as a physician has been, and continues to be, interwoven with my growth as a writer. Writing isn’t a linear process. It often requires detours and tangents to discover what you’re writing about. I’m inspired by creative artists like the poet Mark Doty, who describes uncertainty as a good thing, how in “in any process of inquiry, our uncertainty is our ally.” The ability to welcome uncertainty as a place of unfolding possibility is a critical part of doctoring, too. Sometimes, the questions we ask attest to our clinical acumen as much as if not more than the answers we offer.
Excerpted from Tornado of Life: A Doctor’s Journey Through Constraints and Creativity in the ER by Dr. Jay Baruch. Copyright © 2022. Available from MIT Press.