Telling Patient Stories: When Advocacy Becomes Exploitation

A common feature of my medical education so far has been the use of clinical cases and patient stories to contextualize, synthesize and very often sensationalize some of the basic science material we are learning. Cases seem to be a staple in the way that physicians talk about their work and their experiences; cases are used not only to teach, but to argue, to share. We spend a significant amount of time learning how to construct case narratives and the way that we do this becomes an integral part of how we learn the language of doctorhood.

Being interested in how physicians engage in political advocacy and social change, something that is becoming more evident to me is that cases are not just swapped and shared between medical professionals, or between professionals and trainees, but are often used as a way to argue for particular policy changes, or to illustrate gaps in service. A case about a patient with a substance abuse problem making frequent visits to the ER could be used to talk about harm reduction; stories about uninsured patients are used to talk about coverage and access. The use of patient stories for this purpose is understood – and to some degree rightly so – as bringing attention to overlooked experiences and voices. In more dramatic fashion I was at a talk recently by a physician turned television writer who urged those with patient stories to turn ‘private stories public’, to use experiences with patients as a way to impart larger public health lessons.

I commend physicians who use stories in this way for trying to engage politically and socially, and for using the particular roles that they play to do so. What I’m finding harder to grasp is when physicians decided that these were their stories to share in the first place, rather than those of the actual patients that these experiences happened to. At what point does it become acceptable to share private details about someone’s life and medical history in order to prove a point or teach a lesson? At what point does advocacy on behalf of a particular marginalized group become exploitation of that group’s lived experiences and struggles?

These questions are strongly linked to larger discussions of allyship (some of which I’ve touched on here), but I think there is particular need to think about the way that physicians engage in this because of the incredibly intimate experiences they are allowed access to and because of their particular social power. People listen to doctors and people share things with doctors, in a way that is frighteningly unquestioning. Doctors then have the responsibility to use that knowledge and that access in a way that is respectful of the hardship the person endured in living it, and to me that means using it in a way that does not divorce the story or the case from the person that it has actually happened to. While obviously laws around confidentiality exist and should exist to protect patient identities and privacy, from the cases I have heard so far there are many ways in which details about patient experience could be much better brought into case narratives that almost exclusively highlight the biomedical dimensions of a patient’s story.

This responsibility demands even more from physicians who treat patients with marginalized and oppressed identities. Here, doctors are being given access to stories and experiences that are questioned and undermined at both individual and institutional levels, if they even reach the ears of dominant groups and those in power. When they bring those stories to senate chambers and academic journals and lecture halls, they might be bringing much-needed attention to issues and crises being overlooked, but they are also doing so in spaces and in ways that are still inaccessible to the people that are actually being affected. A physician taking these stories and using them doesn’t for me do anything to work against the silencing of oppressed people: still no one is listening to them speak, only hearing selected pieces of their lives filtered through the lens of a physician, and imbued with the particular social privilege and importance that that brings. Said another way, it’s hard for me to see whether people are listening to these stories because they’ve decided they’re worth listening to, or because it’s a doctor who’s saying them: the former would be a real shift, the latter just another reinforcing of existing structures of power. To me the more effective use of a doctor’s social leverage would be for the physician to bring that person’s story into wider spaces and to influential listeners, but to force open those spaces and make room for patients living those stories to tell them themselves.

Something we’ve been told again and again is the importance of listening to the patient. We need to hear the patient’s needs and concerns and structure our care around what we hear. And that’s the role that a physician can continue to play when it comes to engaging with patient narratives, particularly those from marginalized and oppressed communities: physicians don’t need to be telling these stories, they need to be modelling what it means to actually listen.