In March 2017, Ms. Coleman’s daughter Justice Hope, who was medically complex and had multiple disabilities, died at age 11. She was the sunshine in the lives of many and communicated using a thousand smiles.
Family Connections with Pediatrics
When my daughter was first born and the list of diagnoses and all that they meant, including all of the care they would require, grew long, I quickly saw how she as a person was overshadowed. In a busy and short clinic visit, her medical needs were the focus.
I searched for the right way and time to share about her first smile. I looked for a way to have the visit slow down so the doctor could see her smile. When it did happen, and the story of a life outside the walls of the clinic room connected us all, it was magical.
In this month’s Pediatrics, Dr. Nina Hu from Columbia University has written a Pediatrics Perspectives article (10.1542/peds.2022-060880) that looks at all the stories in healthcare that we tell each other and that we write about in the electronic health record (EHR).
As her guide, Hu cites this definition: “Narrative humility acknowledges that our patients’ stories are not objects that we can comprehend or master, but rather dynamic entities that we can approach and engage with, while simultaneously remaining open to their ambiguity and contradiction, and engaging in constant self-evaluation and self-critique about issues such as our own role in the story, our expectations of the story, our responsibilities to the story, and our identifications with the story” (emphasis added).1
Doctors may not often describe themselves as writers, but much of their day is spent writing notes about patients, signing orders, and so much more. Similarly, much of their day is spent listening to, sharing, and telling stories. This article raises questions and examines how we tell a story, how we hear it, how it is recorded, read, used, and acted upon.
Hu weaves in how different aspects of law, technology, and policy enter into clinical exchanges each day, both helping and hindering the ability to listen, share, and reflect on stories. Examples include:
- “Open notes”—a federal requirement to give patients and proxies full access to all electronic health information
- Changes in practices about the words we use and how we use them, such as person- or identity-first language (for instance, talking about the “the 7-year-old with asthma” instead of “the 7-year-old asthmatic”)
- Inviting patients and families to co-create in the EHR by uploading photos and illness narratives
What can you do with this article?
Read it. See and hear your child, yourself, and your child’s doctor in it. Share it as a two-way open conversation. Enjoy the stories, the relationships, and the care that will result.
References
- DasGupta S. Narrative humility. Lancet. 2008;371(9617):980-981.
