A Bear in the Woods

Abstract

In medicine, we learn what questions to ask to best diagnose our patients. The My Life, My Story program helps participants learn what questions to ask to better empathize with patients.

I still marvel at the fact that, as part of my daily job, I get to walk into the room of a new patient, drag over a padded chair, sit at their bedside, and ask them about their life. Rarely do we waste time with awkward small talk. Within minutes, I am asking about their struggle with opioid use, their multiple previous heart infections, their missing kidney, or their new cancer diagnosis. And they answer me without hesitation. Few questions are too personal—I have asked countless questions about patients’ bowel movements and have received the most amazingly detailed answers.

There is power in this unique role of physician, in the trust that we both inspire in and expect from our patients. They tell us stories, often painful or embarrassing ones. They confide in us. And our job is to ask the questions that will help us care for them. For example, I know what specific questions to ask a patient about her chest pain to determine whether she needs a scope of her esophagus, a computed tomography (CT) scan of her lungs, or a cardiac stress test. Learning these questions, like learning the appropriate antibiotics to start for a skin infection, is part of becoming a doctor. It is how we practice medicine—we use questions to diagnose and determine how to treat disease.

But what about the questions whose answers allow us to better empathize with a patient? We all know that we need to empathize, and we learn phrases for how to do that blindly: “that must be so hard,” “it sounds like this has been challenging,” and “I can’t imagine what you’re going through.” But practicing true empathy is deeper and more complicated than that. I first encountered this concept in medical school when I read an essay by Leslie Jamison. ¹ She writes,

Empathy isn’t just listening, it’s asking the questions whose answers need to be listened to. Empathy requires inquiry as much as imagination. Empathy requires knowing you know nothing. Empathy means acknowledging a horizon of context that extends perpetually beyond what you can see: an old woman’s gonorrhea is connected to her guilt is connected to her marriage is connected to her children is connected to the days when she was a child. All this is connected to her domestically stifled mother, in turn, and to her parents’ unbroken marriage; maybe everything traces its roots to her very first period, how it shamed and thrilled her.

Empathy requires a kind of compassionate curiosity, a desire to know more and go beyond the HPI to get a window into a life story, to spend the extra few minutes discovering the intricacies of the person, not just the patient, who sits in front of you. However, it was not until I started participating in the My Life, My Story program as a resident that I actually understood how to put this beautiful and crucial perspective into practice. My Life, My Story started in the Veterans Affairs (VA) system, and I am part of a group of residents, medical students, and attendings working to bring it to Brigham and Women’s Hospital in Boston, MA. The program involves having a volunteer or member of the care team sit at the bedside and interview a patient about their life story, specifically focusing on the nonmedical aspects of who they are and what is important to them. The interviewer then writes the story in first-person and eventually uploads it to the medical chart. Early research on the impact of implementing the My Life, My Story program with trainees shows that participants better perceive patients as “whole people” and improve on patient-centered care competencies such as demonstrating empathy and active listening. ²

I have now completed 10 such stories, and each one has reinforced my belief that Jamison is right about empathy, illness, and humanity. These aspects of our lives are more connected than I could ever have dreamed. By asking the seemingly unconnected questions, I learn more about the very illnesses I am trying to treat.

I interviewed a woman 2 days before her bone marrow transplant. During the interview, she spent a long time listing the hobbies she loved. We spent a while talking about gardening. Eventually she confided that, with her upcoming need for immunosuppression, she would not be able to garden for a year. We moved on to other topics, but when I asked at the end of the interview for any advice she would like to pass on, she recommended that people take advantage of their free time and do everything they can, while they can. I could have asked her all my “review of systems” questions about mouth sores, abdominal pain, and burning with urination, and I would never have discovered this acute loss of warm dirt and sprouting seeds and would never have thought about what a “get well” bouquet from the gift shop could possibly stir in her.

Another woman I admitted with chest pain seemed dejected. During her My Life, My Story interview, she took me through her weekly activities, which were squeezed into the free moments between thrice-weekly dialysis sessions and her postdialysis exhaustion. She listed the places she had visited all over the world before her kidneys stopped working, including multiple trips to sunny Bahamian beaches and crowded restaurants in Montreal. I realized that her sadness had little to do with her current admission and everything to do with her loss of freedom for the past few decades. She identified herself as a traveler but lamented that she now traveled mostly to and from appointments. Fixing her chest pain was not going to cure her sadness—she dreamed of new kidneys and of taking a cruise.

I interviewed a man who had a new diagnosis of end-stage cancer, and none of his doctors could get him to talk about how he felt about it. We all described him as stoic. But during his interview, he told us an entirely unprompted story about coming across a bear in the woods. He said he was initially hiding behind a tree, but then decided the best course of action would be to emerge slowly and stare the bear down. He told us that we have to confront bears head-on, that it was the best way to deal with them, and that running away would have resulted in his assured destruction. The interview was also the only time he cried during his whole hospitalization. While I am not sure an expert in wilderness survival would make the same recommendation he did, I was not listening for advice on surviving bear encounters. I was reaching through his history and the moments he found important to learn something deeper; I was standing beside him in those woods, listening to him tell me that he wanted to confront his cancer head-on. That to him, running away from his diagnosis would ensure his death.

What good is our unique privilege to ask intimate questions if we cannot get to know the richness of our patients’ lives? How can we treat a person if we do not know them as a person? When we ask the same scripted questions over and over, we forget that our patients’ experiences while wearing these spotted hospital gowns are part of a web of stories that stretches across years and locations. It should be a part of our daily work to travel with them to these memories as we explore our patient’s illness and its impact on their life. As we do the human work of doctoring—as we empathize.

I am both a better doctor and a better human for participating in the My Life, My Story program. Like Jamison recommends, I am learning to “acknowledge a horizon of context that extends perpetually beyond what [I] can see.” Now, when I walk into the room of a new patient, I wonder about their childhood, how they spent their summers growing up, how they met their partner, how many kids they have, and what values they hope to pass on to them. I wonder how their illness impacts their routine, their sense of self. I wonder if they are coming face to face with their own bear in the woods, and what they are planning to do next.