Patient Stories Capture the Immeasurable

May 13, 2019

Patient-doctor narrative matters, says Lisa Rosenbaum, M.D., a cardiologist with Brigham and Women's Hospital in Boston. She shared her insights on patient narratives last month at LUPUS 2019 in San Francisco where she gave the keynote address. Learn more in this Q&A. 

Patient-doctor narratives matter, says Lisa Rosenbaum, M.D., a cardiologist with Brigham and Women's Hospital in Boston. “The essence of being a doctor is to know the stories of your patients well enough to be able to help them in a way that is meaningful to you both. The way that stories are told about medicine often leads to solutions that move us away from the stories of our patients,” she said.

Like her grandfather, Dr. Rosenbaum is both a physician and storyteller. “He wanted to write a book with me and he kept sending me stories that were about his patients, but I never wrote my half of the book. The stories didn’t seem to have a cohesive theme and I couldn’t figure out how to put them together. But then, as I went through my medical training and started practicing medicine, I began to realize that it wasn’t about what any one story meant. For him, understanding these stories is what made medicine meaningful. It was important to him to capture these stories in writing before he died,” she said.

Dr. Rosenbaum shared her insights on patient narratives last month at LUPUS 2019 in San Francisco where she gave the keynote address. In this Q&A with Rheumatology Network she addresses the importance of the patient narrative.

Q:  Why is the patient story noteworthy?

Today, we are so focused on metrics as a way to capture the value of medicine. We measure outcomes, patient satisfaction, hospital stays and whether they are readmitted. In my talk at LUPUS 2019, one of the points of the talk is that stories capture the immeasurable-who people are, and what actually matters to them over time. So, to the extent that we are pushed to focus only on what we can count, we can lose the essence of those stories.

Q:  When you’re talking about storytelling, you’re talking about both the physician and patient?

Yes, filling in the patient’s story is critical to diagnosing them and helping them figure out what their best treatment will be, but I also think that becoming a part of that story is what often makes doctoring meaningful to physicians.

Of course, the other side of this is how storytelling can lead us astray. As we try to make our healthcare system better, one of our biggest challenges is to try to capture what’s wrong in a way that reflects the many complexities and tradeoffs inherent in healthcare delivery. Telling a good story that grabs people’s attention often requires oversimplification.

There’s always an appetite for stories about things gone wrong-greed, fraud, medical error. It’s easy to extrapolate from the few bad stories to make broad generalizations about medicine. Some doctors behave poorly, but most don’t. We see a lot of the negative stories, but there’s so much good that happens in medicine. It’s important to tell those stories too.

Q:  What do you think can start to turn this around?

Well I think there are obvious changes that many others have pointed out:  Less paperwork and electronic health records geared toward communication rather than billing. But if I could change only one thing, it would be time. We need more time with patients. For any physician, it’s very hard to get to know somebody in a 15-minute visit. If we don’t address time constraints, it’s hard to imagine anything getting much better.

To learn more about Dr. Rosenbaum’s writing, follow her in the New England Journal of Medicine where she serves as a national correspondent.