Monday, June 24, 2013

Stories are 'companions' to patients in care

Sociologist Arthur Frank gave a moving account of how stories allow people with illnesses and disabilities to imagine new positive identities.

In his keynote at the International Narrative Medicine conference in London the University of Calgary professor said that following a heart attack and cancer diagnosis in the '80s: "I needed medical information and treatment but I also needed people's stories. The stories of other ill people were not readily available."

In providing a forum for patient stories, Frank said narrative medicine "amplifies voices that are scarcely more than whispers."

It then connects those voices with others experiencing the same thing, giving them credibility and power.

"When voices are brought together and shown to be saying the same things, in their different ways, then they can become a force and get people to take them seriously."

Patient stories "take care of people," he said. "They are companions in a relation of mutual care."

People are empowered to share their story through the accounts of others, he said. "Stories beget stories."

Frank spoke about the positive influence of the hospice movement in moving "care" to the foreground and treatment to the background. "We trained doctors to think of their primary task as listening to patients' stories and helping them feel comfortable." 

Frank spoke about how illness can take away our desire to live and stories "give us the courage to continue to desire things in life."

He said that storytelling is a way to externalize and examine our fears. "Your fears will destroy you unless you externalize them and that's why we tell stories."

He also spoke about how people facing illness or disability need to find their own "style or flare. Stories are how you discover the next viable you. Think of the need of someone who has just been paralyzed to have an imagination of a self he really can be."

He spoke about an author who had lost a breast to cancer but who felt happy with herself and upbeat when she showed up for her first appointment following surgery. Instead of affirming this woman's confidence, the nurse questioned why she wasn't wearing a prosthesis, noting that anything was "better than nothing."

He described this conversation as an assault on this woman's "right to define and claim [her] own body."

Frank noted that patients and health-care providers each have stories that need to be shared. "The ill don't hear about the vulnerabilities of [clinicians], and [clinicians] are running too fast to hear the hopes and fears of patients. And that is truly a pity that impairs everyone's life."

Patients adapt stories to fit their circumstances and clinicians need to be co-creators, Frank said.

He talked about an occupational therapist who was fitting a child with a mask. "'Now you look like Batman,' she said enthusiastically. She was giving Willie a style, an imagination of a self he really can be."

Clinicians need to listen to patients to understand how they are reimagining their lives given their illness or condition and "make yourself part of the story.

"Stories show how artful human beings can be in the face of suffering," he said. "Stories hold me up. They are my basis of being. They are weapons of the weak."


I recently heard David Roche speak at a PLAN event and he discussed stories and how powerful they can be. He is interested in people now because he knows they have stories to tell. I recommend looking him up: