Most often, we elicit a story of disease but not one of the patient who is experiencing an illness. The best stories are cut short. Mr. A’s story may not communicate that he has been homeless for months because he lost his job. Or that his daughter is getting married in a few months and that he is most concerned that he will not be able to walk her down the aisle. Both of these stories — about the illness and about the patient — are important in different ways.
When we look at the medical chart, we can read multiple notes without learning any information that tells us who our patients really are. But what if we could sit down with our patients for an hour and learn about them as people?
So I was intrigued when I heard about the My Life, My Story program started in 2013 by Eileen Ahearn and Dean Krahn, psychiatrists at the Veterans Affairs hospital in Madison, Wis. With My Life, My Story, veterans have the opportunity to tell their story through interviews. These interviews are conducted by volunteers, social work interns, medical students and staff, and others.
Each story is approximately 1,000 words long and written in the first person. Suggested interview questions include: “What has been the most significant change you’ve seen in yourself? What is most important to you? What are you most grateful for? What do you want your health-care team to know that they don’t already know?” There are no medical questions.
The interviewer writes a story, then shares it with the veteran to make sure it is accurate. The story is then stored in the VA electronic medical record; any VA provider caring for the veteran can quickly access it. The patient and family are also offered a printed copy to keep.
The Veterans Health Administration, the largest integrated health-care system in the United States and a part of VA, operates 170 medical centers and 1,063 outpatient sites. They serve 9 million veterans every year, placing VA in a position to set an example for other health-care systems. The My Life, My Story program is offered at 18 VA medical centers, and VA plans to implement the program nationally.
This provokes the question: Why don’t all hospitals have this program? The VA system is unique in that its electronic patient record system allows seamless transitions of care between providers, allowing patients’ stories to be visible to many.
However, the model is a fairly simple one to duplicate. By mobilizing community resources, our patients’ stories can be captured by community volunteers who don’t need to be skilled health-care providers. We can learn more about our patients and help them leave a legacy.
Susan Nathan, a specialist in geriatrics and palliative care, championed the program at the VA Boston Healthcare System in Massachusetts as a way for students and trainees from multiple health and social professions to really get to know a patient’s whole person rather than merely a list of medical problems.
According to Nathan, “Many veterans are surprised how good their story is when they hear it.” One family sent her a copy of the eulogy from the funeral of one of her patients: It included a My Story excerpt. Another veteran requested 12 copies to give to everyone in his immediate family.
Since Nathan spearheaded and formalized the program in April 2016 at the West Roxbury campus of the VA Boston Healthcare System, stories of 230 veterans ranging in age from 33 to 103 have been written.
At their core, stories help our patients heal emotionally and physically. They help both doctors and patients reflect on their experiences with suffering in all forms. When people tell their own stories, they often suppress their bodies’ response to stress, minimizing the production of stress hormones such as cortisol and epinephrine. At the same time, individuals may release dopamine, endorphins and oxytocin, which can help improve mood. Through these mechanisms, storytelling may reduce stress, anxiety and depression. In addition, this process reminds our patients that their stories are unique and gives them a legacy.
Furthermore, as providers, it is important for us to know whom we are taking care of. One patient Nathan interviewed, for example, had helped liberate 15,000 people from a concentration camp. By knowing more, we can be more connected and engaged with our patients. We can truly live the “patient-centered care” that we talk of. These stories humanize the person in the hospital bed and may protect against physician burnout.
Nathan told me the story of a Vietnam War-era Marine veteran she cared for in her medical center’s inpatient hospice unit. “By the time I met him, he was close to the end of his life and couldn’t communicate. I was told that he had been very stoic and that he hadn’t wanted to take pain medicine despite having severe pain. He didn’t have any visitors, there were no pictures, there was no way for me to know who he was as a person before this point,” she recounted.
Fortunately, he had done a My Life, My Story interview about six months earlier. “He talked about when he was a kid, sitting at the top of the stairs and watching his parents dance in the basement. He talked about love and loss and guilt about not being there for family and about not taking better care of himself. There was nowhere else in the chart where I could have found that information, and it helped me feel like I actually knew who I was taking care of and more connected to him.”
Although these stories cannot capture an entire life, they can capture emotions, relationships and values. All by asking a few simple questions.
DeFilippis is a resident physician in internal medicine at Brigham and Women’s Hospital in Boston and will be starting a fellowship in cardiovascular medicine this summer at New York Presbyterian Hospital — Columbia University Medical Center.