Every Patient Tells a Story: Using Narrative Medicine to Cure Disease

Mikkael Sekeres, MD, MS
Director of the Leukemia Program at the Cleveland Clinic in Cleveland, Ohio
Danielle Ofri, MD, PhD
Associate Professor, New York University School of Medicine, New York, NY

As part of the Education Program at the 2018 ASH annual meeting, three physician-writers will offer their take on the intersection of storytelling, writing, and medicine – asking why doctors should care about the narrative, how the patient narrative informs treatment decisions, and how writing can be a tool for advocacy and change.

Here, session chair Mikkael Sekeres, MD, MS (Editor-in-Chief of ASH Clinical News), and speaker Danielle Ofri, MD, PhD, discuss the importance of patient stories and using narrative to enhance the doctor-patient relationship.

Why should doctors care about the narrative of clinical encounters?

Dr. Ofri: The patient’s story is the primary clinical data in the medical encounter. From the stories, we get the most important information for clinical diagnoses. But, beyond that, the narrative places the patient’s illness in context. So, a 30-year-old soccer player’s pneumonia isn’t the same as a 77-year-old artist’s pneumonia.

To be effective clinicians, both in the diagnosis and treatment of our patients’ illnesses, we need to understand their narratives. Then, even beyond that, it is the narrative that makes the medical experience interesting, for both patient and doctors. Without the narrative, we could just have a computer making the diagnosis from a checklist provided by the patient.

Dr. Sekeres: All of medicine is based on storytelling. A patient comes to us and tells us a story of illness; we listen to that story and compare it with other stories we’ve heard to determine a diagnosis. We may call on consultants to help, so we tell them stories about what is occurring with our patient and why we need their help. They then tell us a story about what they feel is transpiring with our patient. We write those stories in the medical record. So, medicine is narrative. We’re proficient storytellers, but often, we don’t take the time to reflect on those stories and how important storytelling is to us.

What do you think are the challenges that make it difficult for clinicians to engage in narrative medicine?

Dr. Ofri: The biggest challenges are the time constraints and the overwhelming tide of documentation brought on by the electronic health record (EHR) system. What was once a human interaction has become a data-entry exercise. To restore the doctor-patient relationship, we need to allow the human connection to occur.

Dr. Sekeres: More interaction with EHRs and billing practices means less time to be creative with our storytelling – both in and outside of the EHR. The default mode of working in the EHR is to cut and paste from previous notes. That introduces more errors in storytelling and discourages clinicians from adding texture to the story. We should be encouraging clinicians to use the EHRs to capture the patient’s story in a real way, rather than using them to meet a billing level.

And, we even have less time to listen to a story. In an exam room, many doctors stare at their computer rather than looking at the person sitting 2 feet away who is telling the story. If 90 percent of communication is nonverbal, like reading body language and facial expressions, then we are losing that from our relationship with patients by staring at an EHR on our screens.

What is the benefit, for both patients and physicians, of engaging in narrative medicine?

 Dr. Sekeres: When we write, we organize facts in a different way than how we may have just heard them. In writing down the story, we may realize, “Gee, one aspect of this story doesn’t flow to the other… Maybe I need to get more information to make that connection.” It may point us to deficiencies in a story that we might not have considered previously.

Writing stories hones our craft as physicians. If I’m engaging in narrative medicine, I’m asking, “I know what my experience was, but how is my patient thinking about what happened?” That means that the next time I go into an interaction with that patient, or even with a different patient who has a similar story, I’m going to carry that perspective with me and I’m going to practice more empathy. That’s going to make me a better doctor. So, the better the storytelling, the better the care we provide; the more complete the story, the better doctors we become.

Dr. Ofri: I think medical journals recognize the importance of the narrative, and that’s why they publish physicians’ stories and poems. These have much more in common with how we live our lives as doctors than the results of a big mega-trial, no matter how clinically relevant the data are. I always laugh at the term “hospitalist,” because we are taking care of patients, not hospitals. Stories and poems speak to the experience of the human connection.

Dr. Sekeres: These creative pieces are often the most read within a journal, and I think that is because the stories and poems reflect our commonality of experience. People may not be able to appreciate that through the staid narrative of a research study. If I see a research article in Blood from an internationally renowned leukemia doctor, I may read that article and say, “That’s research that I’d never be able to do.” But, if I read an essay from a cancer specialist about how hard it is at the end of a day of seeing patients to tuck those emotions away, go home, and face your family, that’s something I can relate to.

Dr. Ofri, can you give readers a preview of what will you be sharing with attendees in your presentation?

Dr. Ofri: We often think of patient communication, or “bedside manner,” as a kindly afterthought in medicine. Actually, the doctor-patient conversation is the single most powerful tool in medicine. Both doctors and patients need to put communication at the top of their expectation lists, so I will be sharing some simple steps we can take to improve communication.