Sitting in a coffee shop, I anxiously awaited one of my patients. I invited him to meet with me to read the story I wrote about what I learned within our working together over a period of more than 15 years with me as primary care provider AKA PCP and him as patient. But really, who taught whom and what? As editor and author, I am preparing to submit the manuscript for Heart Murmurs –What Patients Teach Their Doctors. All of the stories deserve permission from the patients who are described in the book; fewer than half can be reached to ask for this permission.
Some contacts were emotionally easy. There is a chapter on those whose cheery dispositions brighten our days in clinic. When I met with those patients and family members, they enjoyed that I wrote about them in this way. But what about the more challenging lessons? This was the concern as I waited that day in the coffee shop. His was a difficult story, a past experience for him, and a lasting lesson for me. I wondered if he would veto it being in the book. After arriving and some chatting, he read it. I sat there sweating. He said he loved it, and he added some ideas for changing the details that blinded the story. This is how all these meetings have gone: I am anxious and worried and our patients are gracious and grateful for the project, touched that they have taught us. And there is our respect to change what they need changed in the story telling.
Whose story is it? Of course, whether published or not, it is the perceptions (with all the bias implicit in perception) of the writer. On another level, when told it is the story of the teller and those about whom we storytellers write. In patient care, some argue that it is always the patient’s story. I am hoping to respect that view but to have a broader lens.
Reviewing stories with the individuals represented in them is an activity that adds to the relationships we have. One family member of a person who is deceased agreed with my perceptions and contributed details that were important and enriched the story. Several commented on how the story was accurate but that I left out details that were important to them. Often those had to do with what I did for them (much of which I do not remember and all of which was wonderful to hear, but not the focus of the stories). When reading a difficult narrative, several reached out to reassure me or another author. Each of the reviews went well, validating the project and our perceptions of reciprocity in these patient-doctor relationships. For me, what happened in the sharing of the stories supports my belief that this project is worthy for all, not just doctors.
Our physician authors also reviewed their narratives a year or so before publication; for many this review occurred a number of years after they wrote their stories. Older and more experienced, several commented that the revisit was a reminder of how they thought earlier in their career. They could see how they have changed as well as the characteristics that remain.
The ethics of patient protection has muddy waters. Strict rules do not quite fit. I do believe that when we meet with patients and have conversation about a written narrative, the relationship grows. The co-creation of stories can enhance relationships where patients have the agency and that makes sense to me. Doctors have written about their patients for centuries. Most of those writings, until very recently however, spoke to a culture where the patient was less of an equal partner in the physician-patient equation than what we currently believe and teach. Certainly, most of those years also preceded current privacy regulations. As recently as fifteen years ago, this subject was not routinely scrutinized. I have no idea where it will be ten years from now.
The emerging ethic about writing about our patients is not well defined. What can we say? What should we not say? Can we even do this writing? On the one hand, memoirs tell only one person’s perceptions. What should determine how a physician addresses this? In prior works, names and circumstances might be changed, but is that enough? Is there a line that is different when we are writing the story about a relationship that is defined by confidentiality?
At the same time that we ask these questions, medical education is clearly recognizing and supporting reflection by physicians. We teach it; we have reflections in our courses. Those of us attentive to this trend have also cautioned our learners, be they students or residents, about blogging and other social media outlets for sharing their reflections.
What are the answers? Others and I hope any answers encourage compassion and reflection in all of our healing professions. We hope the answers allow the story telling that is so central to our diagnostic and therapeutic work. However these ethics evolve, I hope that we can support stories being told, shared, and valued, while of course protecting the right of patients to their privacy in this very special relationship.
How do we reconcile these tensions in the best way we can?
In Heart Murmurs, the authors, including me, wrote about what they learned about themselves because of and within a relationship with a patient. We can’t tell that story without the story of the patient. I believe there is tremendous social value in this reflection and in it coming to the public domain. How then do we protect the covenant of confidentiality? Today I sit with a manuscript with over thirty authors and many stories of mine, over 80 total from all of us. Where I am settling, and I hope it is good for the mores of today, is the following:
All stories must meet several criteria:
- The value of telling the story is important to our social dialogue. The purpose of this project is one that meets this criteria for all the narratives included in the project.
- The story is told in a respectful way for each person represented. All stories, even those that have difficult circumstances, in this book are respectful, though I recognize how subjective perception is.
- If a person believes a story is about them, they should not feel embarrassed or shamed, also subjective and hard to predict in many cases.
All stories in Heart Murmurs have names and some circumstances altered, except for two where family explicitly approved using the actual name. I believe all included stories meet the above criteria. Patients of mine have read their piece and agreed to publication, or they are deceased and a family member read it and agreed to publication, or they are deceased and I could not find a family member for review, or it is a composite, or it is many years ago and I could not find the person to review the narrative.
If another physician contributor wanted to attach their name to their story one of the following criteria had to be be met:
- The author shared the narrative with their patient and the patient agreed to it being published; or
- The patient could not be found for sharing the story and the circumstances are altered for patient protection; or
- The patient is deceased and the author shared it with a family member who agreed that it can be published; or
- The patient is deceased and no family member is easily found or reachable and the story is generic enough that the identity seems reasonably protected; or
- The story is a composite and thus not attributable to one person; or
- The story is from a number of years ago and no one could be contacted and it is blinded enough so that identity seems reasonably protected from any but possibly the patient.
If one of these six criteria was not met, a story will say “anonymous” and the author can have a biographical note if they wish. For stories with an anonymous author, with circumstances changed, and with the authors being from all over the country, I believe patients’ identities are reasonably protected. Even if a person or a family member reads the book and identifies with the circumstances in a story and wonders, their identity should be protected from others. No persons should be certain it is really about them. What I also know: the lessons in every narrative in this book have been experienced in one way or another by individuals and their physicians all over our country.