The Experts by Experience series features columns—Knowledge Translation–by guest authors who underscore the need for building an engaging, collaborative health care culture. Knowledge Translation columnists include health care leaders, clinicians, researchers, and marketing and communication professionals who translate the importance of integrating first-hand experiences of patients and caregivers, in ways that are meaningful and relevant, to engage and expand the dialogue on patient experience.
“We tell ourselves stories in order to live.”
As our tools of medicine and technology have exponentially increased to include electronic medical records, codes for specific illnesses, and metrics of quality that are often procedure-based, what have we gained and what have we lost? We have gained miraculous biomedical methods for treatment of disease and trauma and an ability to increase the lifespan for many. But, I believe we have lost the context of health and illness that were woven together from the stories of the experience of living with chronic illness as well as the context of witnessing and the human experience of suffering and healing.
If we, as health care practitioners, don’t have insight into the stories that the patient brings and shares, the care we recommend may be clinically correct, but most likely will not be appropriate for the individual.
Stories help us gain context. In health care, we use metrics to determine quality, yet context is something that our current metrics do not include. Without context, we do not have a complete picture of meaning, understanding, values, strengths, and challenges that the experience of illness has on an individual. Eliciting a narrative is a tool that can be taught and practiced in health care, just as we train our practitioners in the use of biomedical tools. Weiner and Schwartz have described the strategic use of narrative process as “contextualizing care.” Their research suggests inclusion of narratives within health care encounters not only provides more appropriate care, but also delivers lower health care costs as a result.
In the Pain Research, Education and Policy Program at Tufts University School of Medicine (where I am a faculty member), a required skill for all our graduate students is learning to elicit a pain narrative as part of a patient encounter. What both the practitioner and patient gain in this collaboration is greater than what can be achieved by only using quantitative pain assessment tools. The pain narrative in the program is derived from the explanatory model (Kleinman) and allows for open-ended responses that elicit a glimpse into the individual’s pain and suffering that isn't possible in a 1-10 numerical response.
Too often, fear creates resistance. There’s the fear of practitioners worrying that eliciting narratives will take an inordinate amount of time, and they will be overwhelmed with what to “do” with the information in the patient stories. There’s the fear among patients that their stories will not be respected, seen as relevant or heard with compassion. If both practitioner and patient understand that this process may result in better, more cost-effective, targeted, relationship-centered care, these fears dissipate.
So, how might we begin to prioritize the importance of patient stories to health care? Start by incorporating the three C’s—curiosity, context, collaboration—as a means of allowing a narrative to unfold.
Practitioners can try prompts such as, “Tell me what you think I need to know about you,” or “What should I have asked but didn’t,” and then simply listen, without note-taking or data entry. Be curious. Be respectful. By listening, you are being invited into the story.
For patients, try to add context during your clinical visit, by offering a bit of insight into you as a person, not focused entirely on your disease. This helps to position yourself as a collaborator of care versus a passive recipient, allowing your practitioner to understand what matters to you everyday. Here are some examples:
“It’s really important to me to be able to cook for my family.”
“I have always been very active, running 5K races until a few years ago, and it’s challenging not to be able to do that.”
We can all work with the 3 C’s—curiosity, context, and collaboration—by expanding our shared experience with the larger world. Co-design and co-creation of projects between patient-focused organizations and health care institutions promote, amplify, and prioritize the social elements of stories and narratives. Online communities provide ways in which stories are heard and shared peer to peer. Personal blogs, artistic expressions such as music or visual art allow individuals to attach context and meaning to the human experience to share with others. The social aspect of telling and listening to stories is important to regain or maintain our connection with the world especially in times of illness.
As we explore and nurture the elements of eliciting narratives—curiosity, context, and collaboration—we will begin to understand, with greater clarity, that stories do matter in health care.
Experts by Experience is a collaboration between Inspire and Mayo Clinic Connect, online support communities for patients and caregivers. By sharing their stories, patients and caregivers awaken, inform, and strengthen the capacity to partner in their care. The stories also help clinicians and non-medical professionals in health care implement patient-informed practices in their interactions and communications, by uncovering opportunities for quality improvement. The series showcases the value of shared experiences and features contributors from around the globe.
About the author: Pamela Katz Ressler, MS, RN, HNB-BC is the founder of Stress Resources in Concord, MA, a firm specializing in building resilience for individuals and organizations. Additionally, she is an adjunct clinical assistant professor of Public Health and Community Medicine in the Pain, Research, Education and Policy program at Tufts University School of Medicine. Ms. Ressler’s research has included one of the largest studies on patient blogging, Communicating the Experience of Chronic Pain and Illness through Blogging and she was also one of the creators of The Narrative Playbook: The Strategic Use of Story to Improve Care, Healing and Health You can find her on Twitter at @pamressler