When Patients Share Their Stories, Health May Improve

By PAULINE W. CHEN, M.D. | New York Times 

A gifted artist in his early 60s, the patient was a liver transplant candidate who learned he had hepatitis B some 20 years earlier. Despite the worsening fatigue that accompanied his liver failure, he threw himself into preparing for his transplant. He read everything he could about the procedure and the postoperative care, drilled doctors with endless questions and continued to drag himself to the gym each day in the hopes of being better prepared to withstand the rigors of the operation.

The only reservation that he mentioned was the same one all the other patients had — he feared that death would come before the perfect organ.

But during one visit just before he finally got the transplant, he confessed that he had been grappling with another concern, one so overwhelming he had even considered withdrawing from the waiting list. He worried that he would not be strong enough mentally and physically to survive a transplant.

In desperation, he told me, he had contacted several patients who had already undergone a transplant. “That’s what made me believe I’d be O.K.,” he said. “You doctors have answered all of my questions, but what I really needed was to hear the stories about transplant from people like me.”

Patients and doctors have long understood the power of telling and listening to personal narratives. Whether among patients in peer support groups or between doctors and patients in the exam room or even between doctors during consultations, stories are an essential part of how we communicate, interpret experiences and incorporate new information into our lives.

Despite the ubiquitousness of storytelling in medicine, research on its effects in the clinical setting has remained relatively thin. While important, a vast majority of studies have been anecdotal , offering up neither data nor statistics but rather — you guessed it — stories to back up the authors’ claims.

Now The Annals of Internal Medicine has published the results of a provocative new trial examining the effects of storytelling on patients with high blood pressure. And it appears that at least for one group of patients, listening to personal narratives helped control high blood pressure as effectively as the addition of more medications.

Monitoring the blood pressure of nearly 300 African-American patients who lived in urban areas and had known hypertension, the researchers at three-month intervals gave half the patients videos of similar patients telling stories about their own experiences. The rest of the patients received videos of more generic and impersonal health announcements on topics like dealing with stress. While all the patients who received the storytelling DVD had better blood pressure control on average, those who started out with uncontrolled hypertension were able to achieve and maintain a drop as significant as it had been for patients in previous trials testing drug regimens.

“Telling and listening to stories is the way we make sense of our lives,” said Dr. Thomas K. Houston, lead author of the study and a researcher at the University of Massachusetts Medical School in Worcester and the Veterans Affairs medical center in Bedford, Mass. “That natural tendency may have the potential to alter behavior and improve health.”

Experts in this emerging field of narrative communication say that storytelling effectively counteracts the initial denial that can arise when a patient learns of a new diagnosis or is asked to change deeply ingrained behaviors. Patients may react to this news by thinking, “This is not directly related to me,” or “My experience is different.” Stories help break down that denial by engaging the listener, often through some degree of identification with the storyteller or one of the characters.

“The magic of stories lies in the relatedness they foster,” Dr. Houston said. “Marketers have known this for a long time, which is why you see so many stories in advertisements.”

In health care, storytelling may have its greatest impact on patients who distrust the medical system or who have difficulty understanding or acting on health information because they may find personal narratives easier to digest. Stories may also help those patients who struggle with more “silent” chronic diseases, like diabetes or high blood pressure. In these cases, stories can help patients realize the importance of addressing a disease that has few obvious or immediate symptoms. “These types of patients and diseases may be a particular ‘sweet spot’ for storytelling,” Dr. Houston noted.

This particular benefit from stories comes as welcome news not only for patients but also for doctors, who are increasingly reimbursed based on patient outcomes. “There’s only so much the doctor can do, so providers are looking for innovative ways to help their patients,” Dr. Houston said. While more research still needs to be done, the possibilities for integrating storytelling into clinical practice are numerous. In one possible situation, which is not all that dissimilar from popular dating sites, doctors and patients would be able to access Web sites that would match patients to videos of similar patients recounting their own experiences with the same disease.

Dr. Houston is currently involved in several more studies that will examine the broader use of storytelling in patient care and delineate ways in which it can best be integrated. Nonetheless, he remains certain of one thing: Sharing narratives can be a powerful tool for doctors and patients.

“Storytelling is human,” Dr. Houston said. “We learn through stories, and we use them to make sense of our lives. It’s a natural extension to think that we could use stories to improve our health.”

Join the discussion on the Well blog, “Healing Through Storytelling.”