Investigating Illness Narratives

*Part II Chapter 7: Attention, Representation, and Affiliation from Rita Charon, Narrative Medicine (pgs 107-130)

*Part IV Chapter 9: Bearing Witness and 10 Bioethics from Rita Charon, Narrative Medicine: Honoring the Stories of Illness (pgs 177-218)

*Healing Narrative: Ethics and Writing about Patients, AMA Journal of Ethics

Reflecting on what you have learned about narrative medicine so far this semester, what ethical considerations must be made when we think of narrative medicine? Some examples of ideas to reflect on include: 

-ethics of practicing narrative medicine clinically with patients (i.e. how to do so equitably)

-ethics of sharing the stories of our patients and/or colleagues and/or loved ones (i.e. issues of attention, representation)

-ethics of how society tends to share certain narratives and silence others, and why this occurs

-ethics of how healthcare systems use patient narratives (i.e. for marketing, for donors)

Are there narratives that we have encountered this semester that feel less ethical than others? If so, why?

This week, we took a step back to reflect on the ethics of narrative medicine. We began with a writing prompt: Write a story about a healthcare experience that isn’t yours to tell. We talked about what makes a story yours to tell, and different writing techniques for writing a story that isn’t yours to tell.

After briefly discussing Beauchamp and Childress’ 4 Biomedical Principles of Ethics, we launched into 3 work groups to define our own policies about Consent, Patient Care, and Marketing/Fundraising. We unpacked what best practices of using stories in these different spaces might look like and created our own standard practices for ethically using stories. Topics included de-identification in narrative and the importance of obtaining patient permission, reframing stories propagated amongst healthcare professionals, and imagining patient-centered approaches to storytelling for marketing/fundraising purposes.

We returned to the same story we wrote about earlier and wrote again: Write about the same healthcare experience as a story that is yours to tell. We reflected on how different this experience felt, and how different the stories were that emerged.

After our break, we began an informal debate to illuminate different perspectives to consider with the ethics of storytelling in medicine. Students were each assigned as patients, families, clinicians, or hospitals. We discussed stories that emerged earlier in class or scenarios that people wrote about in response to the writing purpose.

I concluded class by sharing my own imperfect framework for considering the ethics of narrative medicine:

Who- who is telling the story? Who is receiving the story?

What- what is the story being told?

When- at what time is the story being told?

Where- location of storytelling, i.e. at the bedside, in elevators and stairwells, social media

How- rhetoric, tone, language used to tell story, making space for storytelling?