Why patient stories matter in medical decision-making

An excerpt from Narrative Medicine: Harnessing the Power of Storytelling through Essays.

I work for an organization that manages the medical and mental health needs of children and adults who are severely and persistently ill. Typical diagnoses in the population I serve include intellectual/developmental disorder, autism spectrum disorder, disruptive mood dysregulation disorder, bipolar disorder, schizophrenia, substance use disorder, and many other conditions that impact mood, cognition, reality testing, conduct, and impulse control.

A major part of my time as a physician advisor involves listening to stories about patients and determining whether their services are medically necessary and beneficial. Are their medications the right ones? Is their mental health care being coordinated with their physical health care? Do they need to be in the hospital, or would a less intensive level of care be just as good – for example, a residential treatment facility, an assisted living facility, or possibly a group home? Do they have a support system to prevent relapse and readmission to the hospital?

The teams I work with understand that I want to hear the clinical information in the form of a story. I want to hear about the patient as though they were the story – their problems, current and past treatment, personal and family history, and successes and failures. What course of therapy has been helpful, or not? Who are they upset with? Why are they hopeless and despondent? Who abused them, and what was the nature of the abuse? What do their “voices” tell them? How did they become homeless?

Occasionally, instead of being told a story, I listen to a team member reading verbatim from the patient’s medical record. The person relating the story is one of the company’s utilization managers. The story is an accumulation of facts, an austere recital of the patient’s progress notes. There are many time gaps in the history, and the chronology of events is jumbled. It’s up to me to try and piece the puzzle together, to understand the patient’s story. Usually, the best I can do is speculate about missing vital information, and I’m left with an incomplete story.

It’s difficult to make the best recommendations when the presentation – the story of the patient – is built on a foundation of inadequate information. It’s like trying to decipher a cell phone conversation with intermittent dropouts, or playing the piano with sheet music that is faded or partially stained. I can’t read the music. The notes (or phone content) must be interpolated. The problem is, in medicine, crucial decisions should not revolve around guesswork.

When I hear a patient’s story that is incomplete or lacking in certain details, I often tell a story in response. The story calls forth all sorts of hypothetical scenarios based on my practice days, such as, if the patient hasn’t improved with “X,” I would recommend “Y,” or, if they have not had a trial of drug A, I would consider starting them on it, and so on. I am quite fond of telling stories, and our team rounds have become a source of delight for me and other team members, enriched by patients’ stories and sometimes the ones we tell about ourselves.

There are differences between telling a story and hearing one, although both are beneficial in different ways. The act of storytelling can be a form of catharsis, allowing patients to express their feelings, experiences, fears, or hopes. This can be particularly therapeutic for people who have undergone traumatic experiences or those dealing with emotional distress. Storytelling can help patients make sense of their experiences, gain perspective, and find meaning in their narrative. It can also build their self-esteem and confidence as they articulate their own stories.

On the other hand, listening to a story can provide comfort, inspiration, or insight. It can help patients feel understood and less alone in their experiences. Hearing a story can foster empathy, as listeners place themselves in the shoes of the storyteller. It can also provide learning opportunities, as individuals gain insights from others’ experiences and perspectives.

In the context of narrative medicine, both telling and hearing stories are crucial. Health care providers listen to patients’ stories to understand their experiences and perspectives better, which can inform their approach to care. At the same time, patients telling their stories can feel empowered and heard, contributing to their healing process.

The phrase “stories heard and stories told” emphasizes the reciprocal nature of storytelling. We both consume and contribute to the rich tapestry of narratives that shape our lives and connect us to one another, regardless of the setting in which they occur. Whether we’re listening to someone else’s story or sharing our own, storytelling is a fundamental part of human communication, culture, and connection.

Arthur Lazarus is a former Doximity Fellow, a member of the editorial board of the American Association for Physician Leadership, and an adjunct professor of psychiatry at the Lewis Katz School of Medicine at Temple University in Philadelphia, PA. He is the author of several books on narrative medicine, including Medicine on Fire: A Narrative Travelogue and Narrative Medicine: Harnessing the Power of Storytelling through Essays.

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