Archives for posts with tag: storytelling in health care

Stethoscope

Doctor and patient in City Hospital Tuberculosis Division, 1927 (Item 2721, Engineering Department Photographic Negatives (Record Series 2613-07), Seattle Municipal Archives, from Flickr Creative Commons)

The invention of the stethoscope spelled the end of story-based medicine. That claim caught my attention when I was listening to White Coat Black Art on CBC. Dr. Brian Goldman, the show’s host, was interviewing Stanley Reiser, a medical historian.

In his 2009 book, Technological Medicine: The Changing World of Doctors and Patients, Reiser wrote, “Before stethoscopes, the coin of evaluation was words—the doctor learned about an illness from the patient’s story of the events and sensations marking its passage.”

Diagnoses were often made via letters. Patients wrote detailed descriptions of their symptoms, the remedies they had tried, and their emotional state. Not every physician was comfortable with this. Some complained of patients’ inabilities to accurately describe their illnesses. Others chided doctors for subtly guiding the narratives and missing the correct diagnosis.

In 1816 René Laennic, a 35-year-old French doctor, invented an instrument that would allow him to listen to a woman’s chest without violating her modesty. The stethoscope quickly became popular and “took the mantle of illness out of the hands of patients and placed it in the doctor’s orbit.” (Reiser)

When Dr. Goldman interviewed him for White Coat Black Art, Reiser said the stethoscope “led to a seismic shift in how doctors evaluated illness and their relationship with the patient, which changed as they became more interested in the evidence from the body and less interested in the evidence from the story.” The new technology “made doctors more interested in the physical findings of disease than in the life of the patient.”

Reiser is concerned that over-reliance on technology has lessened physicians’ openness to the patient as a whole person rather than a collection of symptoms. But there’s a movement toward storytelling in medicine, generally referred to as “narrative medicine”.

Narrative medicine is, in many ways, a return to pre-stethoscope days. Dr. Rita Charon, who coined the phrase in 2000, describes it as “medicine practised by someone who knows what to do with stories”. In “What to do with stories: The sciences of narrative medicine”, she writes, “Whether sick or well, the reader of an illness narrative is summoned by the author to join with the teller—to form community that can combat the isolation of illness.” [Canadian Family Physician August 2007 vol. 53 no. 8 1265-1267]

Illness is a lonely journey, particularly when it’s chronic or when the impact is life threatening. It’s lonely for the person who is ill and for those who are caretakers. Narrative medicine takes this into account, placing the illness in the context of a life rather than the narrow confines of symptoms.

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“I can’t tell a story,” he said. “My memory’s gone. I’m just here to listen”

The man sat on his motorized wheelchair, in a workshop on telling stories. I remember his jaunty cap and the fringe of grey hair around his ears and the back of his neck. We were at the Tulsey Town Storytelling Festival in Tulsa, Oklahoma. I was giving the group some tips on crafting a compelling tale from the flotsam and jetsam of their lives.

We did some exercises to stir their creative juices. I wanted them to leave with one good story they could wow their friends with, some gem mined from the ore of their lives. We worked at chipping away extraneous detail until only the shining core remained.

They all tried and most were eager to share their polished stones. The man in the wheelchair listened. His eyes were lively. But he couldn’t handle any of the exercises. They were tapping into the labyrinth of his short-term memory. That part of his brain was a jumble. Words dropped in and rolled off into dead ends or got lost around corners.

He dug a gem from the treasure box of his life (Photo courtesy of Sam at Photos8.com, whose work is brilliant)

Still, he laughed and nodded and sighed. I could see he was enjoying himself but was disappointed he couldn’t participate. At the end of the workshop, I learned how wrong my definition of participation had been.

He looked at me with a mischievous grin. “I love listening to stories, but I didn’t think I could ever be a storyteller. Now I know I can.” Others had stopped to talk so he ignored my startled expression and rolled away.

A story swap ended the day. That’s where anyone with a short story to tell can sign up for the chance to share a tale with the kind of receptive audience that flocks to storytelling festivals.

Our man in the wheelchair motored to the front. When all eyes were on him, he said, “Until today I believed I could never be a storyteller. My short-term memory is gone. I thought I had to learn stories in order to tell them. Now I know I can dig in the treasure box of my memories.”

That man dug a gem out of the treasure box of his memories. His short story had us holding our sides with laughter. The storytellers in the audience were wide-eyed with admiration. Here was a natural spinner of tales, a weaver of words, a teller who held us spellbound.

He also had an audience. I don’t know if he found other audiences after that day. I hope so. He was a gifted storyteller.

I thought of him yesterday when I ran across the report of a study carried about by University of Missouri Researchers. Patients with mild to moderate dementia increased their social interaction and were happier, an effect that lasted for weeks after the storytelling sessions. They were using the TimeSlips Creative Storytelling program, designed to tap into the imagination of Alzheimer’s patients. TimeSlips discovered that people with mid to late stages of memory loss may no longer be able to string together a story with beginning, middle and end. But they still have a treasure box of memories, full of shining stones.

We all have a treasure box. One of the greatest gifts we can give each other is to share our shining stones.

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Friends of the Earth have created a very powerful short plea for the “men in suits” to act on what they already know to avert disaster due to climate change. Using a child as narrator and some clever visual storytelling, the video is a graphic summary of the problem and the need for urgency.

I found this through a new Twitter friend, Nick Kellet. He’s CMO and Product Strategist for HuStream, a company that “mixes human psychology video wizardry and web-based technology to redefine viewer engagement.” Browsing around their site gave me all kinds of ideas for using storytelling for promoting, informing and inspiring.

One very exciting example is a “video conversation” that features children from a school that raised $16,000 for a project called “Free the Children“. A second example is a promo video for Isagenix’s Beyond Courage personal development retreat.

There are lots more good examples on the Friends of the Earth YouTube Channel and on HuStream. Have to say I’m proud to know the latter is a company right here in my own home town of Kelowna, British Columbia.

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Having moved so many times in my adult life, I’ve rarely had the chance to really connect with “my” doctors. Some make it easier than others. They are the ones who know how to listen, who want to know the context of whatever symptoms walk through the door. They want to know my story.

A doctor who stands out in my mind took a storytelling course from me through the University of Washington’s Experimental College. During introductions, he told us why he was talking the class.

Virtual Environmental Doctor

Virtual Environmental Doctor, from Wonderlane's Flickr photostream, seems an apt visual metaphor

He led Grand Rounds at the University of Washington Medical Center. He knew talking about symptoms and treatments was not enough. He wanted students to understand no one’s health deteriorates in isolation. His goal was to tell patients’ stories in a way that would teach diagnosis as an art, not just a skill. Judging from the stories he told during the course and his intense listening when others spoke, I’d say his students had a good chance of becoming better doctors thanks to his influence.

So I was keenly interested to find the story Dr. Jack Coulehan tells on the Alaskan LitSite. He writes about his internal medicine practice in a rundown neighbourhood in Pittsburgh in the 1970s. He was a young doctor, with a scraggly beard that amused his patients. “But the thing they found most strange about me was that I spent so much time listening to their stories.”

He goes on to describe his experience as a junior faculty member at the nearby university hospital. He writes, “When students tried to tell their patients’ stories during rounds, the resident would caution them to stick to the point.”

That attitude turned the people he knew into objects. They were transformed, like the self-educated, paraplegic teetotaler who was an expert on Pittsburgh history. The medical team labeled him an “alcoholic” because of his red nose and colorful vocabulary and sedated him into a “zombie who couldn’t think straight”.

Coulehan says that medical students receive mixed messages. They take classes that focus on narrative as the heart of medical practice, then enter hospitals where they are taught that stories “may actually obscure the problem” and where the technical fix and objective data overrule patients’ narratives.

In British Columbia a new program is trying to address this, by training volunteers to influence a health system that too often talks “about” rather than “with” them. Patient Voices Network has launched with a large and hopeful intention: “We expect that as experts in their own lives, patients can provide health system administrators and care providers with important information about [how] to best serve them and involve them in their own care as partners.”

One of the things volunteers have asked for is training in storytelling. They understand intuitively that change happens when we hear, understand, and honour each others’ stories. Perhaps through their influence there will be many more doctors like Dr. Coulehan and the doctor who came through my class many years ago.

[Have you had a doctor who really heard your stories? Taught physicians to tell stories? Share your experiences in the "comments" section below.]

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Regular readers of Story Route and those of you who are Facebook friends will likely recognize A Storied Career. It’s Kathy Hansen’s “Blog to explore traditional and postmodern forms/uses of storytelling”. Even in the middle of a cross-country move, Kathy continues to post provocative and fascinating entries on a dizzyingly wide array of storytelling topics.

So when she asked if I would participate in her Q&A series, I was honored. She sent a list of questions to choose from, all of them well crafted and designed to set my mind racing.

I’ve excerpted a few excerpts below. The whole Q&A is available on A Storied Career. While you’re there download the e-book she created with her first forty online interviews: Storied Careers: 40+ Story Practitioners Talk about Applied Storytelling

Here are the excerpts:

Can you elaborate on how you applied your experience as a performance storyteller to your new career [as a community developer]?

The realization was not instantaneous. For the first while, I had the usual worries: Someone would find out I was actually a storyteller masquerading as a community developer. Then it would be game up.

What happened instead was that I began to insert stories into presentations and to use storytelling techniques to prepare reports. It wasn’t long before I was seen as a storytelling community developer. Or was it a community organizing storyteller?

How did you initially become involved with story/storytelling/narrative?

Storytelling became the underpinning of everything I did. When I look back on the unexpected twists and turns of my professional life, I feel extraordinarily lucky. Storytelling allowed me to be happily employed, doing what I loved. Initially, I thought that meant performing and workshops. When that morphed into the world of community development, I realized I’d found my niche and have been happy in that ever since.

To what extent and in what ways do you feel these venues [Web 2.0 and social media] are storytelling media?

The various social media are a means of entering the world of story from different points. We can assume an avatar and jump into Second Life. We can try out a new story and test it on Twitter or Facebook. We can blog a different perspective and see who responds, and how. We can invent our professional persona on LinkedIn.

To me, it’s all part of the larger arena of storytelling. If we don’t fall into the trap of becoming an observer, if we actually engage and become creative contributors, we can experiment with creating new stories.

What’s your favorite story about a transformation that came about through a story or storytelling act?

Although I know many instances of transformation through a story or storytelling act, I keep coming back to two I had the honour of witnessing. Both were published in The Healing Heart~Communities and are on my Catching Courage blog.

As a transplant from the US, what similarities and differences do you observe in the storytelling environment between the two neighbor nations?

John Ralston Saul may have the answer in his extraordinary book, A Fair Country. He points out that one of the major differences between the US and Canada is the latter’s Métis roots (which he also says we ignore at our peril). Saul writes that the first European arrivals had an egalitarian relationship with the First Nations people who were already here, a relationship destroyed by latter settlers, who brought cultural genocide.

Read the whole interview on A Storied Career.

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Electronic medical records (EMR) are a boon to doctors. They gather all information about patients in one convenient place, easily accessed when someone presents a new set of symptoms or some variation of the old. As the patient’s story unfolds, her doctor can scroll through the appropriate records, underpinning the narrative with knowledge of previous illnesses or injuries or stresses.

Doctor and patient

Doctor and patient in City Hospital Tuberculosis Division, 1927. Item 2721, Engineering Department Photographic Negatives (Record Series 2613-07), Seattle Municipal Archives.

The problem in the U.S. is that those records have to be coded for insurers, reducing everything to medications, tests, diagnoses. The narrative becomes fractured, the interwoven story of the patient lost.

Writing in the April 22, 2010 issue of The New York Times, Dr. Pauline Chen quotes Dr. C. T. Lin, a practicing internist and chief medical information officer for the University of Colorado Hospital in Denver: “Physicians think in stories. How can you possibly point and click your way through a patient’s 10-year history?”

Speech recognition software may ease the problem, allowing physicians to dictate patient histories in a way that returns narratives to their records.

Reading the article, I reflect on the seven-minute billing blocks that have become standard practice in British Columbia health care. I value the universal system that has allowed me a long freelance career unshadowed by the threat of loss of medical insurance. But I wonder if the pressure on patients to spill their stories quickly and on doctors to diagnose in pieces doesn’t add to patients’ stress and decrease the chance of accurate diagnosis.

Wellness, as opposed to our western focus on sickness, is a matter of balance and wholeness. Our stories are essential to that. The labyrinth of American insurance requirements and the forced brevity of our B.C. patient-care system both disrupt our narratives. And if our doctors cannot really hear our stories, they can only treat our symptoms, not assist us to recover balance and wholeness.

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Eye-catching logo for the Our Stories conference

Our Stories conference logo

Without a doubt, the best organizational storytelling conference I’ve ever participated in was the Our Stories conference in 2007. Sponsored by Vancouver (Canada) Coastal Health, it drew an enthusiastic audience of 230 health professionals.

The conference co-sponsors were AHIP, the Aboriginal Health Initiative Program, and the Sharon Martin Community Health Fund. AHIP’s co-sponsorship and the focus on storytelling were what attracted a large contingent of First Nations and Métis participants.

That added richness and depth. Roughly half the participants came from cultural traditions that honor stories and storytelling. Their presence gave non-indigenous attendees the freedom to set aside, at least for two days, some of their (and their bosses’) worries about whether or not a storytelling conference could be justified in fiscal and temporal terms.

Graphic notes

Session notes were recorded graphically

The intent of Our Stories was “to build community capacity by supporting all stakeholders to:

  • Explore how stories can be used in reporting, funding applications, and communications with others.
  • Brainstorm cost effective ways to integrate storytelling into current or planned projects and programs.
  • Explore the use of spoken word, art, photography, videography, popular theatre and more to capture stories of change.”

It isn’t possible to capture ambience. Nor can a Web site show the joy of sharing discoveries and enthusiasm with other conference participants. But the Our Stories Web site has plenty of discoveries, food for thought, and even delight. On it you’ll find videos of the plenary sessions, PDFs of the presentations (including brief notes for my own, in the Foundations section), exercises, and graphic-recording images.

Story graphic

This graphic wove through the conference

Aline LaFlamme, a Métis woman who emceed the conference, beautifully summarized why the conference had a profound impact on all of us who came. Scroll down this page of the Our Stories site to see the video of her closing remarks. [There's a photograph of this beautiful and accomplished woman here.]

I transcribed the excerpt below, but do watch the video, which is powerfully moving. [Scroll down to near the bottom of the page and click on the video link below "Closing Remarks by Aline LaFlamme, Conference MC.]

I can’t really say enough about the importance of what has happened here.
Since contact between the people of this land and European people,
people of this land have always, always, always tried to speak
about the importance of storytelling.

It’s the way people were taught
from generation to generation to generation.
It was an inherent part of community. …

And we know that rich way of being in the world
and of sharing and building relationship
and of building a sense of self
was often ignored and invalidated and trampled.

So our voices and our ways of using our voices
that include spirit and heart were largely cast aside.…

It’s very significant to me that a large funder
and many, many, many other funders
and many people from all four directions
have come together
because all of us come from rich storytelling traditions.
If we go back to when we were more connected
to the land of our ancestors,
all of us come from rich storytelling communities and nations.
All of us do.…

And so, we’ve lived in this industrial world for a long time,
and in this industrial world we’ve largely cast off
many of those aspects of ourselves,
and we’ve come to kind of worship the intellectual ability,
the ability to quantify everything,
and we lost so much in doing that.

And so to me there’s huge significance
and huge healing between us as people,
for the people of this land and all the people that have come,
to say storytelling has great importance,
storytelling is valid,
and we’re going to promote it,
and we’re going to include it.

It’s a huge healing.

When our dear one spoke about residential school earlier,
and I know how many of our relatives
had blocks of wood put in their mouths and tied there
so they could not have a voice,
when I come to a conference that’s about telling stories,
it’s really casting off those blocks of wood
and those rags that held the wood in place.…

And if we can connect back to those good traditions,
it means we can go forward,
and we can bring this forward
to our children and our grandchildren.…

~Aline LaFlamme

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A few months into a new job as Food and Health Project Manager for Interior Health (the health authority that serves British Columbia’s southeast region), I was asked to lead a storytelling workshop at the Population Health conference.

The invitation was not totally out of the blue. Storytelling had been part of my community development work in northern B.C.

I figured a three-hour workshop would be easy, though the audience might be skeptical of the value of storytelling in a health context. I was well prepared until, a week before the conference, the terms changed.

The organizers had shifted their thinking. Storytelling would no longer be a sideshow. It would be the main attraction.

Two and a half days with administrators, managers, front-line staff…that’s an enormous investment of resources. It had to be worthwhile.

Naramata Centre

Naramata Centre, setting for the workshop

I had used a narrative approach in all my community development work. I had promoted storytelling as an essential part of any non-profit’s bag of tools. What I hadn’t done was preach the storytelling gospel to management and staff of a bureaucracy with 18,000 employees. I felt like a very small frog in an ocean-sized pool.

We started the first session sitting in a large circle. I looked at all my new colleagues and wondered if I could pull it off.

Introductions began. One of the first to speak was Dr. Paul Hasselback, the Chief Medical Health Officer. Whatever he said would help set the tone for the event.

I was nervous. If he were skeptical of the value of storytelling, others might be less inclined to set aside any doubts they had brought with them.

I needn’t have worried. A year before, he had participated in an invitational conference in in Montréal. Sponsored by the Canadian Health Services Research Foundation, the focus of the conference had been…storytelling. [Details below.]

Dr. Hasselback talked about storytelling in the context of research, evaluation, and policy direction. He said we needed to be better at translating our work for a lay audience. We needed to tell better stories.

I don’t know if the whole room relaxed, but I certainly did. This group of overly busy people had just been given permission to become storytellers. I had no doubt I was the right person to plant seeds in the soil Dr. Hasselback had loosened for me.

The evaluations were glowing, but I was most pleased by a direct and immediate result. Two days after the conference, one of the attendees opened a meeting with a story. This wasn’t just any meeting. It was a meeting called to deal with a particularly volatile issue. Staff came ready to pounce.

Naramata Centre waterfront

Beach at the Naramata Centre in British Columbia

The story, a metaphor for the controversy at hand, poured oil on the proverbial troubled waters. The temperature of the room dropped from boiling to warm. An explosive situation was defused.

Over the next few years, I had many opportunities to embed storytelling in the corporate culture of the health authority. I know I would have done it anyway, however the initial workshop had turned out. Storytelling has been part of my work since before I even knew what to call it.

But it made a difference to everything that came afterward that my new colleagues “got” it and gave me permission to share it.

***********

In March 2003 the annual conference of the Canadian Health Services Research Foundation brought together “150 managers, policy makers, and health services researchers to understand the use and abuse of stories, but also to enhance their ability to effectively use stories and anecdotes to bring research to life and encourage evidence-based decisions.”

The conference report, “Once Upon a Time…The Use and Abuse of Storytelling and Anecdote in the Health Sector”, is organized in four sections:

  1. The Abuse of Stories and Anecdotes in the Health System
  2. Stories and Anecdotes in Health Services Research, Management, and Policy
  3. Characteristics of Effective Stories in the Health Sector
  4. Towards Evidence-Based Stories
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