When Patient Stories Leave the Hospital Room

There are many ways a woman reacts as she pushes out her baby. One patient couldn?t stop laughing as the baby crowned. One screamed for ten minutes (no epidural). Another only grimaced and clenched her hands. I was particularly touched by a woman who cried tears of happiness throughout.

One patient, cervix fully dilated and about to start pushing, pulled me aside. ?I want to apologize for whatever happens next,? she told me. ?I?m a really nice person, I promise. But I don?t know what I?ll do or say once the baby starts coming out.?

?Don?t apologize,? I said, and reassured her that nothing she did would change the way I thought about her. Of course, no one else would hear about it. ?It?s like Vegas here. What happens in the delivery room stays in the delivery room.? I added.

It?s a comforting thing for me to say and for a patient to hear. But is it true?

Storytelling is part of a physician?s job. A doctor creates a narrative to communicate to a medical team. The prose is precise and the language is standardized, but the team wants to know what happens, in what order, what to do about it, and why.

The desire to share, however, sometimes extends beyond the confines of clinical care. During lunch, in the hallways, and in the elevators, my classmates and I trade snippets of what happened to our patients today. We know better, but we take the risk that even if strangers catch a few word here and there, not enough can be pieced together to violate confidentiality. It is part of the ?hidden curriculum??that is, being taught one thing in the classroom and practicing another in the workplace. None of this is new or news.

A major shift occurs when two things change: 1) the medium and 2) the audience. We go online and write what we have previously shared in hushed tones over hospital meals. Our intentions are usually good: to share, to connect, to explain, to teach. But we are no longer looking our audience in the eye. We cannot see who our words reach, and we cannot see their effect. How do our responsibilities change?

I have found that the biggest challenge of writing as a medical student is the balance between confidentiality and honesty. During the first few days of medical school, I asked the higher-ups at my medical school for advice about boundaries in writing. Admitting it was a gray area that made heavy use of common sense, one of my advisers told me, ?People aren?t going to trust you enough to talk to you if they think you?ll have no restraint in writing what they say. The classroom would no longer be a safe place.?

Similarly, sometimes you meet a patient with an extraordinary story that you wish you could share, but it is too challenging to anonymize the details without losing the message. Here is where the specifics become even more confusing and peculiar. Sometimes I change identifying details (gender, age, location, temporality, or disease) or use a conglomeration of patients instead of just one. But doing this is inherently dishonest: even with a disclaimer, my story is partly fictional and it is impossible to know which part. It becomes a representation of my perception rather than reality. If I want to make a specific point, what is stopping me from tweaking a detail or two to fit my worldview? Are my quotations verbatim, or are they close enough? Do I become a screenwriter rather than a physician if I change five details? Ten? Twenty?

Additionally, different rules surface depending on the outlet or story type. One major newspaper, for example, lets you omit details but not create them. It is also possible to seek the permission of the patient to tell a story. However, giving that person discretion over what smaller details are shared may change the story on a more macro level. It seems as though honesty and confidentiality lie on two opposing ends of a seesaw, but the audience is never sure which side is up.

As an employee of my hospital, I have access to every patient?s online medical records. Each time I look up a patient, a box pops up. ?Reason for looking up this patient?? My cursor hovers over the possible options: ?Clinical care,? ?Teaching,? ?Research,? ?Admin,? ?Quality assurance??it goes on. I instinctively head for the first or the second, because it?s how I want to see myself. What I am doing is in the patient?s best interest, or in my colleagues? best interest, or in the public?s best interest.

But there is one option at the very end of the list that stands out: ?Other.? If you click ?Other,? you must explain why, on the record.

With online storytelling, I suspect there is a lot of ?Other.? But will we label it as such? Will we articulate why we need to share and who benefits from it? The rules are ambiguous enough today that I can push off the question, at least in medical records. It lingers in my mind though, as the details of what happens in Vegas slowly leak their way out.

~~~

This piece will appear in the book Establishing, Managing and Protecting Your Online Reputation: A Social Media Guide for Physicians and Medical Practices by Kevin Pho, MD and Susan Gay, in January 2013.

Images: Nmadhubala on Flickr and Tsca on Flickr

Source: http://rss.sciam.com/click.phdo?i=c5cf0701c9fb437490f897ed8057721e

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