Stories and medical records

Tim Senior is a GP at the Tharawal Aboriginal Corporation, Airds, Australia.

Are you sitting comfortably? Then I’ll begin. The world of general practice is made up of narratives that are both present and absent at the same time. We are taught to sift through our patients’ stories looking for the golden nuggets — crushing chest pain, headaches, sore throats — that might indicate pathology. Even as experience teaches us the importance of understanding the specific stories our patients bring us, our medical records and funding encourages us to strip away stories and keep only the codable. Our guidelines encourage us to use standardised tools to score symptoms and keep them safely away from any stories. Essentially our medical records can become descriptions of our patients with all the emotions wiped away.

Our patients know this intuitively, even if they can’t put words to it. Standardised questionnaires never seem to remain standardised in the asking.

‘Over the last 2 weeks, how often have you been feeling tired, or had little energy?’

‘Well, I had to help Ed with the kids on Tuesday, then the buses were cancelled … ’

When patients say, ‘The doctor didn’t listen’, there’s always an unspoken ‘… to my story’ afterwards.

While GPs all know the importance of patients’ stories, this is a strange secret, in that it’s other people who don’t want to know. We’ll never get funded for being experts in understanding and reframing patient narratives, we are only ever funded for biomedical management of chronic diseases and keeping people out of hospitals.

From the outside, the crucial information is correct diagnoses, drug treatments, measurements, and allergies. There’s no room for stories in the smartwatch or app. Can patient stories survive extraction into medical records, or summarisation by the large language models of artificial intelligence?

I think we may have mistaken information for stories, and we can see this if we think about a shared electronic medical record. One of the supposed conveniences of a shared electronic medical record is that patients won’t have to keep repeating their story across different services.

If the record is working really well, I can see, maybe, that my patient has depression, is on sertraline, and maybe scored 17 on a Patient Health Questionnaire (PHQ-9). I still know next to nothing about this patient. Who have they got around them? What activities did they love doing and would like to get back to? Are they being bullied at work? What would people from the same cultural background say is the way through this?

On its own a diagnosis is useless information. Cecil G Helman’s anthropological folk model of general practice¹ reminds us that patients want a coherent story constructed around their diagnosis: ‘What has happened? Why has it happened?’

Patients want to be seen and heard as people in their context, and GPs want to understand patients as people. Without the specifics of their stories they are reduced to the stereotypes of case scenarios.

So we’re in a situation where we understand the importance of patient narratives, but if we talk about this in these terms to policymakers and even some of our specialist colleagues, we’ll be dismissed as chin-stroking hippies, unable to do proper medicine. Our patients won’t care about stories, except they’ll know when we’ve heard theirs properly, and especially when we’ve made therapeutic use of stories.

No wonder we’re not sitting too comfortably.

Reference
1. Helman CG. Disease versus illness in general practice. J R Coll Gen Pract 1981; 31(230): 548–552.

Featured photo by S O C I A L . C U T on Unsplash.