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Patients Storytelling

Many in our community tell stories of visits to their doctors and dentists, where they felt they weren’t listened too.  Research has shown that it can take as little as 11 seconds for a patient to be interrupted by a medical professional, which impacts how our stories are heard.  Very often the medical professional, which their knowledge gained from medical school, decides what is wrong without really listening to the back story. Can patients storytelling help make better doctors.

In an effort to help medical students learn how to observe, listen and appreciate a patient’s perspective Melbourne University  Faculty of Arts is offering medical students a 4 week creative writing course.

The below article was written and published for the Guardian

Paul Daley

Sun 11 Jun 2023 11.00 EDT

‘Pushed into humanity’: can learning about storytelling make better doctors?
Narrative medicine encourages doctors to engage more deeply with patients by listening to their stories

The Melbourne general practitioner Mariam Tokhi knows exactly what her friend and colleague the senior paediatric emergency physician Fiona Reilly means when she speaks of her “back pocket full of ghosts”.

Reilly is talking about those haunting memories all medical doctors harbour about their interactions with patients who are sometimes labelled “difficult” or for whom things didn’t go as they should or could have. Some survived, perhaps even flourished. Others died.

Doctors tend to evade their ghosts due to their onerous memorial weight, the expectation of stoicism freighted upon them amid the inhumane demands of the medical profession. But Reilly and Tokhi have a different strategy.

Narrative medicine encourages doctors, through writing, to engage with patients’ stories.

They write about these patients, and their shared experiences with them, as practitioners and now teachers in the University of Melbourne course on narrative medicine. Narrative medicine is a practice new to Australia whereby doctors are encouraged, through writing, to ethically engage far more deeply with their patients’ stories.

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At its core, narrative medicine aims to build greater doctor-patient empathy. By listening to and observing patients more acutely, physicians get to understand how story – experience – impacts patients diagnostically and therapeutically. Not least, narrative medicine also nurtures doctors’ creative lives, all too often suppressed by their profession’s punishing demands and overwhelming traditional emphasis on biomedicine and checklists.

In close listening, we are pushed into empathy and into humanity
“Storytelling asks us to hear about what growing up on the mission meant for the patient in bed 14 with the terrible diabetes,” Tokhi said in a speech. “To understand what leaving behind his children in Iran means for the psych patient you just admitted. To acknowledge the unspeakable brutality of childhood sexual abuse borne by the girl with pseudo-seizures. To comfort … the woman who is bleeding heavily in the corridor of the maternity ward with her threatened miscarriage.

“It is easy to be frustrated with systems and to be cynical about demanding, sick, dehumanised Mrs Smith … but in close listening, we are pushed into empathy and into humanity.”

Besides being an experienced emergency doctor, Reilly is a food and travel writer. Like Tokhi, she has studied narrative medicine at Columbia University, regarded as the global exemplar of the practice. With a master’s of fine arts in creative writing, she is now working on an essay collection about her paediatric medical work as part of a PhD in creative nonfiction and narrative medicine.

“This is the first time I have ever written about my medical work,” Reilly says. “But like every doctor I know, I carry around a back pocket full of ghosts. You know – the stories that have stayed with me, the ones that I can’t shake for whatever reason, that need to stay with me because they help inform my current practice.”

“That story of the way I deal today with the family of the child with suspected septicaemia, for example, because many years ago I lost a child patient with septicaemia who died despite our best efforts. And I’ve never forgotten her and her family. These stories don’t go away. They stay with you.

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“But by externalising them – and narrative medicine I think gives you a way of doing this sensitively and ethically, as well as creatively – that’s a real gift. To be able to take those stories out of your back pocket and actually put them down on to a page is a gift.”

Tokhi is a GP working in refugee health in Melbourne’s western suburbs. She also teaches professional practice at Melbourne University’s school of medicine. For years she has written extensively as an advocate for some of her patients and in the media about primary care at the “deep end” of the public health system.

But, like Reilly, she was also searching for greater meaning in her profession and was eager to find a creative structure that more fully reflected the “stories” of her patients.

Dr Mariam Tokhi says narrative medicine has made her a more effective advocate and brought a new depth of meaning to what she does.
Photograph: Ellen Smith/The Guardian

There was nothing in Australia. Only through Columbia could she find what she was looking for.

“I was grappling with some really big questions around patients’ personal stories. I felt quite comfortable about the medicine of doctoring – you know, with the science and the guidelines and the protocols. But so much of it seemed to be about more than just that,” she says.

“It seemed to be about how to really talk to someone. How do you hear what they’re trying to tell you? How do you show up for somebody’s story and for what is working for them in their life and how that affects their diabetes, or how their PTSD is playing out or what supports they have around them to engage in care around their cardiac rehabilitation?”

Narrative medicine, she says, has made her a more effective advocate and brought a new depth of meaning to what she does.

“Narrative medicine has taken me to a place where I’m writing poetry regularly and I’ve got a novel that I’m trying to chip away at,” Tokhi says. “It has also been really liberating for me in terms of processing the big and the small but also often quite heavy things that can happen in medicine.”

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Rita Charon, the founder of the narrative medicine programming at Columbia, writes about how it is assumed that health professionals “know of the centrality and privilege of storytelling in their practice”. And yet an ignorance of the importance of patient story has become a defining professional trait.

“What else do we think we are doing when we ask someone in pain about their situation? Even the junior medical student who says, ‘What brought you to the clinic today?’ and is met with the answer, ‘the M104 bus’ knows that he or she is in search of a story,” Charon writes. “And yet, there has been an odd diminishment of the status of storytelling in medicine ever since we decided we knew enough about the body by virtue of reducing it to its parts.”

That axiomatic complaint about a doctor’s “poor bedside manner” stems, in all likelihood, from their failure to actively listen to a patient’s story. The instruction of seasoned doctors and medical students in narrative medicine can help remedy this.

The University of Melbourne’s school of medicine is the first Australian medical school to embrace narrative medicine, this year offering a four-week intensive elective – titled the craft of creative writing – to its second-year medical students.

Tokhi designed the course and she co-teaches the curriculum with Reilly. It explores the craft of narrative fiction and poetry, how to more actively listen, read and observe, as well as how trainee doctors might incorporate their skills as writers into their future clinical work.

A diverse range of writers talk to the class. They include the novelist and surgeon Neela Janakiramanan, the poet and GP Janaka Malwatta and the physiotherapist and memoirist Fiona Murphy. Other writers who’ve spoken to the class include Eileen Chong, Anna Spargo-Ryan, Melanie Cheng, Maxine Beneba Clarke and the First Nations novelist and poet Tony Birch, whose participation is enabled by his position as the Boisbouvier chair in Australian literature at the University of Melbourne’s faculty of arts. The chair was established in 2015 with a $5m donation from Myriam Boisbouvier-Wylie and John Wylie.

“The creative responses produced by the medical students indicated not only a passion for writing and reading, but their obvious compassion for people,” Birch said. “They are the young people who will be caring for our health in the future. I felt privileged to share a classroom with them.”

In a narrative medicine lesson Birch gives his students a writing exercise.

Fiona Reilly and Mariam Tokhi co-teach the narrative medicine course.

He asks them to choose a simple framing device for a short narrative. To illustrate, he reads Raymond Carver’s poem, Happiness, where the narrator is viewing boys on the street outside through a window in his home.

If ever you find yourselves in a patient’s home, take a good look around, he says. To this end, he urges the trainee doctors to write about an object dear to them.

“My mother has the same teapot she’s had for 60 years,” he says. “I could buy my mother any number of new teapots and people have presented her with new teapots over the years. But she goes back to this old beaten tin teapot because she knows it is the one from which she’s offered tea to people for decades of her life.

“So, when you walk into someone’s kitchen or lounge room have a good look around you, because what’s around you will give you a great sense of that person and their life.”

And carry a notebook, he urges. (It might sound obvious, but how many writers forget the prosaic – yet profound – observations and thoughts that come to them on public transport or in the supermarket because they don’t have pen and paper?)

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Lily McCann, a 22-year-old medical student, has done lots of creative writing in her spare time and hopes to find a place for writing in her future medical career. But she has never done a writing course.

“I thought the course would create a space for debriefing and reflection that would help me to process some of the things I had seen already as a medical student and some of the questions my experiences thus far had raised,” she says.

“I think that considering patients’ stories is so essential to thorough, holistic medical care. When you look at a patient from a narrative standpoint, you take them in as a whole person. It prevents you from processing them mindlessly as another diagnosis, another problem to be treated … narrative medicine encourages reflection in a way that deals emotionally, as well as practically, with encounters in the medical field. I think developing this skill helps you to be a better doctor and person.”

Students of the narrative medicine course are urged to carry a notebook to record observations.

Anton Lu, 21, began studying medicine because the would-be fantasy novelist’s parents told him a discouraging truth – “that authors need a day job”. The narrative medicine course seemed like a perfect way to bridge these worlds.

“I did not at all anticipate the relationship between story writing and medicine. It seems funny to say it when medicine is positively overflowing with unique stories, but we are taught to approach patients very systematically, going through the checklist of symptoms to arrive at possible diagnoses. Our assessments are timed – seven minutes – and you can’t afford 30 seconds to ask about someone’s cat, just as it is in hospital where doctors are often already working 16-hour days.”

He says the course has reminded him that the best writing explores the essence of what it means to be human. In doing so it “enters the same sphere as healthcare, wherein healthcare workers deal in life and death on a daily basis”.

Writing, he says, is a way for doctors to maintain balance; “to allow yourself to feel in the moment, but to then pour your emotions on to the page and begin sorting through them, whether that be through a self-reflective piece or in the struggles of a fictional character”.

Reilly and Tokhi insist that many medical practitioners are naturally creative thinkers and writers, as well as big readers of narrative literature. The medical profession has a rich literary history, producing some of the world’s finest writers, from Anton Chekhov to Oliver Sacks and Nawal El Saadawi.

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Reilly is an inveterate traveller who collaborates in paediatric medicine initiatives in China and Pakistan. “There was something about the combination of me being a doctor and having a creative practice that intrigued a lot of my colleagues, many of whom were secretly creative but weren’t willing to own that because they felt it made them seem less serious as clinicians.”

Tokhi says that western medicine’s patriarchal hierarchy, its overwhelming emphasis on biological science and encouragement of stoicism among practitioners discourages the emotional vulnerability central to good narrative writing.

Course participants say that considering patients’ stories is essential to thorough, holistic medical care.

“We know that suicide rates among doctors are higher than in the rest of the population,” she says. “We know that the culture of stoicism has a lot of downsides. It means that we push past our own needs, physically and emotionally, quite literally. We bury things we experience because that is what we are taught from day one …

“It’s been really beautiful to see this spirit of sharing and vulnerability. And doctors aren’t often encouraged to express vulnerability. In a consultation you’re often playing a role that needs to be a little bit authoritative. We are very much trained to conform to a type.”

Tokhi and Reilly spend a lot of time encouraging students to write in their own narrative voices – “which was a concept they found hard to understand,” Tokhi says. “But they learned that they were all individuals with something particular to bring to writing and medicine – and that it was not at odds with being a doctor to be fully and completely yourself.”

Reilly says: “Narrative medicine just has a way of opening a vein, somehow. And all this stuff just comes out that is deeply vulnerable but also very beautiful. You know, objectively, it’s very beautiful.”

And that can only make for better doctors.

• This article was amended on 14 June 2023. Rita Charon is the founder of narrative medicine programming at Columbia University, not the “director of the narrative medicine course” as an earlier version said. To clarify, Mariam Tokhi and Fiona Reilly are graduates of the narrative medicine certificate of professional achievement, not the masters degree in narrative medicine.

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