Telling the stories behind Why We Revolt

The Uruguayan writer Eduardo Galeano 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 my book Why We Revolt  I make 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.

Biology and biography

At Patient Revolution we’ve assembled 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 who 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 that 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.

Stories are essential, as part of conversations, if we want to form relationships of careful and kind care.

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 clinicians see the patient in all their problematic human dimensions.

To understand the whole dimension of the problem, they must go beyond the biological and 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 aid diagnosis

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 woven through the drama of life, so that the end result is the co-creation of a programme 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 at 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.

Victor Montori is professor of medicine at Mayo Clinic in the US. Victor is co-founder of The Patient Revolution, a non-profit organisation that puts into action the ideas proposed in Why We Revolt. This blog was first published on the Mayo Clinic website.

Sign up to come to our free event with Victor ‘Where next for the Patient Revolution?’ on Wednesday 10 May.