Stories: The Journey to Utopia – Experts by Experience
From time to time, 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.
Galeano, the Uruguayan writer, tells the story of an Argentinian filmmaker’s response to a student who asks about the purpose of utopias. Utopias are like the horizon, he says, in that no matter how many steps we take, we can never reach it. He adds, “What, then, is the purpose of utopia? It is for that, for walking.” I would add that the footsteps that mark the distance covered in our journey are stories.
In October 2017, I published Why We Revolt. As its subtitle indicates, this book, makes the case that we need to turn away from industrial healthcare toward careful and kind patient care for everyone, but I could not have made that case without stories.
People often demand, “Show me the data!” as if these data will depict the true situation. I have yet to see data depict human suffering–the suffering that results from industrial healthcare, for example–with the same vividness and clarity, with the same truth, as reflected in stories. In this sense, stories are more likely to capture the human experience, the human yearning for careful and kind care for all.
At Patient Revolution –a nonprofit Mayo Clinic-spinoff–we’ve begun to assemble a Story Library –stories that patients and clinicians have sent in response to Why We Revolt, using the language proposed in the book. These are stories of incidental cruelty and accidental care, stories of efficiency without efficacy, of greed pricing people out of the care they need. These are stories of patients that appear as nothing more than a blur to their clinicians, of the burden of care that an industrial healthcare system imposes upon the lives of caregivers, by delegating completion of more medical errands,
But there are also stories of elegant care which is neither wasteful nor hasty; of clinicians appreciating patients and their situations in high definition, attending to their biology and their biography. There are stories of people working on behalf of others, of empathic connections and solidarity, and of relationships of care and love.
Clinicians can access the dysfunctions of our organs and the many ways our bodies fail, through sophisticated laboratory tests that pry open the secrets of genes and microbes that lie in our gut. But, when patients and clinicians come together to make important decisions, stories help them see the patient in all their problematic human dimensions.
To understand the whole dimension of the problem, they must go beyond the biological–consider where each person comes from, what they value, what their lives are about, and what matters to them. This knowledge is only accessed through conversation–for within these conversations are the stories that help co-create plans of care.
Stories give events a sequence, a tempo, and can help clinicians arrive at a diagnosis. It is through stories that they gain an appreciation of the life and loves their treatments are about to disrupt. It is through stories that clinicians can learn how well their care plans have weaved through the drama of life–so that the end result is the co-creation of a program of care that best fits into patients’ lives.
Industrial healthcare, with its distracting computers and its efficiency metrics that accelerate visits, leaves little time for conversation. It shouldn’t come as a surprise then, if clinicians are increasingly burned out because they see little meaning in their work; or if patients celebrate, like they’ve won the lottery, when they find a clinician who listens to their stories. With little opportunity for conversation, without the time to listen, we may perhaps arrive to the correct response for a patient’s situation, but only by accident.
Stories are essential, as part of conversations if we want to form relationships of careful and kind care–in which we try and fail, and try again. And it is through the stories we choose to share, that we will create a movement. And as we walk together toward a better horizon, our stories of care will tell how far we have come.
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: Victor M. Montori, M.D., is Professor of Medicine at Mayo Clinic. He is a practicing endocrinologist, researcher, and author, and is a recognized expert in evidence-based medicine and shared decision-making. Dr. Montori developed the concept of minimally disruptive medicine and works to advance person-centered care for patients with diabetes and other chronic conditions. He is the author of Why We Revolt – a Patient Revolution for Careful and Kind Care