The Art of Narrative Medicine

by Kelly Kimball

Keisha Temple* was a patient I saw during my medicine subinternship in my fourth year of medical school. During my last week on the inpatient medicine team, I was responsible for going to the emergency department to evaluate Keisha for admission. “She's a regular and not very friendly,” my senior warned me. As I dove into Keisha's chart, I saw numerous admissions over the past 5 years. She seemed to be a very sick woman for only being 35. She had type 1 diabetes, end-stage renal disease, Hurley stage 3 hidradenitis suppurativa (HS), CHF, and numerous other conditions. All of her medical admissions were for flares of historically uncontrolled HS in the setting of missed dialysis treatments. The notes in her encounters were filled with words like “noncompliant,” “difficult,” and “opioid-seeking.” I saw her last admission was less than 2 weeks ago and that she had left AMA. I prepared myself for the encounter and headed to the emergency department.

I began the encounter optimistically: “Hi, Ms. Keisha; my name is Kelly, and I'm from the internal medicine team. How are you feeling today?” I saw a small woman crouched in the corner of the room, shaking violently. She slowly turned around to face me. She looked at me skeptically and began to speak tearfully. During my encounter with her, I could sense that something was different. This wasn't the same patient I had read about in her chart. She was soft and hurting. An evident mistrust of the medical system was apparent during the first 10 minutes of speaking to her. I asked for permission to examine her wounds. She had numerous abscesses, consistent with previous HS flares, and although she endorsed pain, that was not her main complaint. “Something is different this time. I have wounds in places I have never had them before. And they are much more painful than my abscesses.” I examined her thighs and back and saw indurated, necrotic ulcers. I presented her to my attending, highlighting my thoughts that she may have evolving calciphylaxis and that we get her to inpatient dialysis and adequately treat the pain associated with her ischemic ulcers. The rest of my team and my attending did not seem concerned. They stated that this was just another one of her “episodes” and another attempt at trying to secure opioids for pain associated with the negligence of her chronic medical condition (HS).

Over the next 2 days, Keisha could not sleep or eat due to her pain. Her necrotic lesions continued to spread, and I continued to advocate for her to receive adequate pain management. She became progressively somnolent. When she was awake, she was angry with the team and nonparticipatory. When I would round on her in the morning and check on her in the afternoon, she would reach out to me, hold my hand, and cry, “They're letting me die in pain; why can't you help me.” Our inpatient dermatology consult confirmed my initial fear: calciphylaxis. Yet, bias continued to guide the encounter, and her pain went unmanaged. During my encounters with Keisha, she told me about her kids, how her life had been ruined due to her medical conditions, and that no one wanted to help her. Her life was a constant cycle of working to support her kids, missing medical appointments due to work, inability to manage the complexities of her medical conditions, missing dialysis due to her HS pain, and then being admitted to the hospital for uremia and emergent dialysis. And—what's more—she had told her story countless times, to numerous different providers, as a cry for help.

She coded the next day and passed 30 minutes into compressions. Keisha died a miserable death, experiencing some of the worst pain imaginable. She left behind three children, all under the age of 12. I remember calling her mother after she coded to tell her that Keisha was passing. Unfortunately, her mother couldn't get there in time because she had no car and had to wait for the bus. When she arrived, she grabbed my hand and thanked me for listening to her daughter and believing in her pain. Through her burst of tears, she expressed her gratitude that I was able to hold her daughter's hand through the last few days of her life and allow her story to be heard one last time.

Keisha is a patient I will never forget. She is an example of a patient whose life was cut far too short due to numerous social determinants of health and inherent biases in our health care system. I struggled for days after her passing, wishing there was something I could have done to help her. I eventually came to terms with the fact that, as a student, sometimes all we can do for patients is listen and hold their hand, making them feel heard. Our ability to foster humanism in medicine is contingent upon our ability to practice narrative medicine. Sometimes all we have in these small, precious moments with our patients is the ability to give their narrative the center stage and advocate for them as best we can. That is the art of narrative medicine at its core: it is allowing a patient to share their story, even if they have told it a thousand times before without being heard.

*Pseudonym used to protect patient privacy.

Back to the December 2023 issue of ACP IMpact