Editor’s Note: Harriet Hall (she/her/hers) is a pediatrics resident at the University of Virginia. Prior to medical school, she completed a masters in bioethics. She is interested in how ethics intersects with our work in pediatrics, specifically when caring for our medically complex patients.
Caring for children with medical complexity continues to be a core part of pediatric practice. It is crucial to acknowledge that our patients are more than their charts, and our medical decisions have a significant impact on their daily lives.
In an article being early released in Pediatrics this week, entitled “Understanding Complex Care Through Narrative Medicine: A Qualitative Study,” Cara Coleman, JD, MPH, from Bluebird Way Foundation and UVA Medicine INOVA Campus and colleagues used narrative medicine workshops to expand on the Entrustable Professional Activities (EPAs) central to complex care (10.1542/peds.2024-069776). Six EPAs (feeding tubes, care coordination, safety/emergency olanning, pain/irritability, goals of care, and advocacy) were reenvisioned to better encompass the patient and family experience in complex care. Of note, this study also includes an accompanying video abstract.
The authors qualitatively evaluated an educational intervention for a targeted population, all of whom were recruited from an international complex care listserv and so were already highly motivated to improve the complex care experience. Thirty-five participants completed 18 narrative medicine workshops.
Participants included:
- Family leaders
- Nurses
- Nurse practitioners
- Physicians
- Psychologists
- Social workers
Participants completed surveys that asked if learning objectives were met and compared their pre- and post-workshop definitions of each EPA.
Ninety-five percent of participants agreed or strongly agreed that learning objectives were achieved.
Surveys also revealed four significant ways in which participants’ frameworks for complex care shifted:
- Fragmented to holistic care: Aligning clinical perspectives with a common focus on the patient and family’s experience.
- Intractable to navigable complexity: Identifying resources to empower families to navigate a complex medical system.
- Transactional to relational connection: Shifting from focusing on objective measures to building relationships and common goals of care with families.
- Caring in isolation to caring in community: Acknowledging the loneliness experienced by medically complex patients and families and identifying ways build community
I recommend that you read this paper, as it includes several powerful quotes from participants that exemplify those shifts.
Pre-workshop EPA definitions largely focused on medical complexity while post-workshop definitions consistently incorporated the experience of patients and families. For example, the workshop focused on a feeding tubes EPA included a reflective writing prompt asking participants to write about a time at the kitchen table. The post-workshop definition then included “Making sure the young people are included in the traditions of the kitchen table and family mealtimes, in addition to getting safe nutrition.” After reflecting on how patients with feeding tubes experience mealtime with their families, the purview of complex care was expanded beyond their nutritional state and considered that mealtime is an opportunity for patients and families to connect over this common human experience.
This study used written reflections to encapsulate the patient/family experience, build empathy, and expand the perspectives of those involved in complex care. The more we ask how our medical decisions impact a patient’s experience in the world, the more wholly we can care and advocate for them.
