Receiving patient and community stories with thoughtful attention can help serve the aims of equity in healthcare.
When was the last time you wanted to tell more of a story but didn’t get the chance? We’re living in a moment of increased awareness of the ways systemic inequalities inflect healthcare. With a background in literature, I know the transformational capacity of listening to stories as it relates to a patient’s health.
However, the potential for change doesn’t reside in the story alone, but also in our reception of the story. If we don’t “read” a story carefully or receive it well, the story’s calls for change may not be noticed or answered. In fact, it may mean it’s dismissed. Could the rest of your untold story have meant something vital for your life or your health?
Learning to see the rest of the story in healthcare
Reflecting on the ways gaining narrative skills can lead to systemic change, I’m reminded of the first series of the first narrative medicine workshops I held with an interprofessional healthcare education program dedicated to under-resourced communities. Narrative medicine is defined by Dr. Rita Charon as “clinical practice fortified by knowledge of what to do with stories.” In our first workshops, I introduced narrative medicine methods and literary tools in the context of a conversation about social determinants of health (SDOH) and Adverse Childhood Event (ACE) scores.
In this early work together, we also discussed the book “The Deepest Well: Healing the Long-Term Effects of Childhood Trauma and Adversity” by former California Surgeon General, Dr. Nadine Burke Harris. In the book, Burke Harris recounts her experiences implementing ACEs scoring broadly in her Bay Area integrative pediatric practice. ACE scores are a one through 10 measure of a child’s exposure to toxic stress that predict health outcomes across the lifespan. Notably, with appropriate intervention and continuity of care, the chances of negative outcomes based in ACE scores can be mitigated. In this compelling study, Burke Harris documents her growing understanding of the connectedness between underlying stressors in a child’s life and in life of the family, and in turn how both of these might indicate community health needs, challenges, and disparities.
“When I looked at my patients with high ACE scores, I couldn’t help but think that if I treated just the asthma or the obesity or the behavior problem, I was a really poor student of history. We know from the research that the life expectancy of individuals with ACE scores of six or more is 20 years shorter than it is for people with no ACES. To treat the root of the problem I had to look at both stories my patients’ symptoms were telling me: the story on the surface and the story underneath.”
Tracing the stories of these traumas provides pathways of healing for children, families, and communities.
Thinking about “story” provides a structure to guide listening
Seeing the story underneath a patient’s toxic stressors isn’t only understanding history, but also understanding how a person’s world coalesces in terms of narrative. In narrative medicine, we use the term “nested narratives” to think through the many levels of story that unfold to make the story before us. Burke Harris evinces the value of this kind of attention repeatedly through her focus on the nuances of patients’ lived experiences as they correlate to ACE scores and diagnoses like eczema and asthma. She thus shows her ability to be a deft analyst of stories in addition to being a savvy historian.
It was extraordinary for me to be present with those students in nursing, medicine, public health, dentistry, and community health workers. This diverse group worked together to reflect on ways individual patient needs may mirror community needs and to think through the ways arts-based strategies and the tools of literary analysis might make them more alert to “reading” the details of patient stories. More, our early work with ACEs energized ongoing narrative workshops at the students’ requests.
One of the most powerful lessons I see health professions students taking away from these workshops is the idea that every member of our interprofessional conversation can view the same piece of art, poetry, or film, and draw conclusions based on different ways of viewing. Sometimes these are shared and we learn how to look with a fresh perspective and check our assumptions. Sharing diverse interpretive skills with professionals of different hierarchical standings in a noncompetitive setting allows for appreciation of different viewpoints. It also teaches us that it can take a team to get to the heart of a story.
Narrative competence for equity and ethics
It’s clear that the scholars I work with understand the concept of narrative competence, which Drs. Rita Charon and Craig Irvine describe as “the fundamental human skill of recognizing, absorbing, interpreting, and being moved to action by the stories of others.” Charon and Irvine also explain that the ability to draw on narrative competencies in order to act in medicine is where narrative medicine meets bioethics: to be ethically “moved to action” in a decision for a patient requires being accountable to the details of their story. For this, we need narrative skills, and it helps to practice them in community. This may also be a productive means to work towards the AAMC’s recently published “Diversity, Equity, and Inclusion Competencies Across the Learning Continuum.”
Further, the AAMC’s recent guidance “Advancing Health Equity: Guide to Language, Narrative and Concepts” emphasizes the connection between narrative and equity in a section titled “Why Narratives Matter,” stating that “narratives are embedded in the structure of the health care system, and in the ways in which we think about patients, families, communities and neighborhoods we serve—and even ourselves.” Dedication to the careful untangling of all the narrative threads that compose those systems takes attention to time, voice, mood, setting, motion, and metaphor in a framework of social justice with a dedication to connecting meaningfully with our collaborators. All of these factors are core components of literary analysis in the practice of narrative medicine.
Thus, the need to study the holistic story of patients’ lives as they relate to SDOH is not unlike the need to respond to the systemic failures, limitations, and injustices addressed by diversity, equity and inclusion (DEI) initiatives. Further, narrative medicine offers the tools and structure necessary to support rigorous and compassionate DEI work.
How to start your narrative practice:
1. Attend a narrative medicine workshop and participate.
Many workshops are now offered via Zoom and are an excellent opportunity to try out the practice and to get a sense of how you might start a group tailored to your setting.
2. Learn more about the theory of narrative medicine.
Reading chapters in “The Principles and Practice of Narrative Medicine” by Rita Choron et al.
3. Start small.
Narrative medicine doesn’t have to begin with a large group. Even a short poem sent out in a group email with a reflective writing prompt can provide colleagues the opportunity to share interpretations. Look for starting points.
4. Make time for the arts in your DEI processes.
Not only do art and literature provide the opportunity for group connection and reading, but they are also valuable tools for learning about the communities you serve.
This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.