It is important that we reflect and write about the work we do with patients. As we reflect, we create a narrative that sometimes becomes a written piece. We cannot really tell our stories without including the patients because it is actually our perception of the patients and their stories. And yet, we also have a covenant of confidentiality with our patients. Beyond what HIPAA says, we live within ethical considerations that must protect our patients.
What then can we do when we write and then want to share that writing with a friend, in a blog, or for a journal submission?
When writing about patients, we must respect these ethical considerations. In an evolving set of guidelines, the best practice remains to show what we write to the person about whom we wrote. That is what I encourage writers to do whenever possible. It can be scary and it is always fruitful. You might learn more about the story, about the person, about yourself, and the bias inherent in your viewpoint. That information might lead you to add to or edit your reflection. Then what you have is a co-creation, and your patients will feel valued and respected. Alternatively, these conversations may also clarify reasons to not publish the piece.
Sometimes that sharing is not possible. Maybe it was a chance encounter, and you have no way to find and contact the person about whom you wrote. Or the person is deceased and you could not find a family member for review. Or it was many years ago. So then what?
Start with asking yourself three questions and apply them as criteria for submitting or publishing your narrative:
- Does the story have social merit? Writing for promoting your worth is not a good reason. Writing and sharing a lesson that can benefit the larger community can meet this criterion.
- Is the story respectful of the person about whom you wrote? Even difficult stories can be told in a way that is respectful to the humanity of the character.
- If persons were to read it and think maybe it was about them, would they feel shamed or embarrassed?
Then, be sure to change identifiers: gender, age, occupation, and some facts of the clinical case. The point is to change enough that the patient and their families would not recognize them, while at the same time preserving the story’s purpose and lessons. Refer to the epilogue of the book Heart Murmurs; What Patients Teach their Doctors to read more on the ethics of reflection when writing about patients.
In this digital age, it is very easy to publish. These criteria can assist us all to be more mindful when we are telling our story that actually is just as much someone else’s story. It is important that we teach about this with our learners and that we comment on other’s work where we think care is not taken.