Diana Toubassi is at a crossroads. A family physician at Toronto Western Hospital, she has been in practice for a dozen years. In some ways, medicine gave her what she wanted. But she also knows she is not the doctor she wanted to be—can’t be the doctor she wants to be—and it bothers her.
“I was thirteen or fourteen patients into the clinic,” she says, recounting a typical day in practice. “I had a green trainee with me who hadn’t done any clinical rotations yet. We were running behind, and I felt like we were drowning in patients. I had her go and see a newborn baby who was there for their first visit. Mom was clearly overwhelmed and tearful already. Baby was jaundiced and not gaining weight.” At the same time, Toubassi says, she was seeing a woman in her eighties armed with a written list of eight issues that had to be resolved in ten minutes.
Toubassi tells her story quickly, precisely, narrating the chaos as if it were a regularly scheduled program. She seems amused as she tells it, as if the sequence of events was both hilarious and ridiculous. Slight discomfort belies her laughter, a momentary slip of the mask from sprightly to exhausted, then back.
“While I was seeing this elderly lady and my medical student was seeing the newborn baby, the nurse knocked on my door and said that the person who didn’t show at nine this morning made a mistake with her appointment time and she’s here to see you and she needs a renewal of her medication and can you still see her?”
A slight, small woman with the dawning of grey in her black, curly hair, Toubassi knows that most doctors struggle to care for the ill in a way that also cares for themselves. “You have moments like that, and you know there is just no human way, no way, that I can be in three places at the same time and give these three patients what they need from me today,” she says. “It’s not possible for me to do that and still be intact.”
Lately, Toubassi has been drawn to a discipline known as “narrative medicine,” a movement that aims to use the special qualities of storytelling as a tonic for what ails contemporary medicine.
Developed in the 1990s, narrative medicine’s most prominent proponent in North America is Rita Charon, an internist and Henry James scholar at the Columbia University Irving Medical Center in New York. At its core, Charon’s big idea is that, by studying literature and other arts, doctors can develop deeper psychological insights and sensitivities, allowing them to listen to their patients better. In parallel, it encourages physicians to write and share their stories of clinical encounters with one another. Opening up to their peers about their struggles and using a literary sensibility to do so can, according to Charon, benefit them as well as their patients: doctors need to learn to listen to themselves too.
Burnout is mounting among health care professionals in Canada. According to a 2018 survey by the Canadian Medical Association, 30 percent of physicians show signs of burnout, and 8 percent had suicidal ideation in the past twelve months. The emotional deadening that accompanies burnout likely has direct effects on patients and their care. That is part of the reason narrative medicine is catching on here in Canada, with conferences, workshops, and a few hospital programs dedicated to the subject. Among them is a pilot project Toubassi has launched at Toronto Western. Medical students are required to attend two-hour sessions in which they discuss a poem or short story, do some writing of their own based on a prompt from the instructor, then discuss what they have written.
In Toubassi’s eyes, the dominant model for addressing burnout currently adopted by the health care system, which is to foster greater psychological and emotional resilience, is misguided. Too often, she feels, the idea of resilience is misinterpreted in such a way that the mental health of medical practitioners is viewed as something they can fix by simply taking a break. The message to medical students these days is that burnout—and the lack of empathy that is a frequent symptom of it—can be mitigated by stopgaps such as bursts of exercise rather than only by a deeper change in the rhythm and practice of medicine. With mild irritation, she adopts a stentorian tone, mocking the voice of medical authority: “‘We are excusing you from clinical activity; go do yoga.’ To me, that’s an absurd approach to fostering wellness.” She thinks narrative medicine may nurture a deeper sensibility that can be integrated into a physician’s work in a way that the occasional yoga session can’t.
For those who adopt it, narrative medicine is brimming with promise. But the industrial model of modern medicine, with its fifteen-minute appointments, doctors recording information on computer screens rather than looking at their patients, and hospital rooms attended by a rotating cast of physicians, residents, and nurses, has a way of grinding down the hope of change. Will narrative medicine become just another bit of respite from a system that chews through practitioners and patients? Just another yoga?
It is late spring 2018 and Toubassi has come to Toronto’s Mount Sinai Hospital to learn more about narrative medicine as she designs her program. There are around twenty others attending an introductory atelier—mostly health professionals and a few writers, including the authors of this article, one of us a journalist and the other a poet-physician.
The workshop is organized by Allan Peterkin, a psychiatrist, and Michael Roberts, a family physician and general-practice psychotherapist, both professors of medicine at the University of Toronto. Peterkin is a leader of the narrative-medicine movement in this country. A tall, blond, quick-to-chuckle man who looks much younger than his sixty-one years, he believes in the healing power of story for both patient and doctor.
“A doctor may have seen a thousand cases of congestive heart failure in a career,” Peterkin says in an interview. “But, if they’re going to connect with a patient, they need to find out what’s unique in that person’s experience, so that the patient feels heard and understood.” Narrative medicine encourages physicians to “talk about bearing witness to suffering, that their [patients’] suffering has been acknowledged.” In other words, it encourages them to listen.
In a long, bright boardroom in Mount Sinai Hospital, we analyze paintings, write poetry, and use crayons to make abstract images of our regular days. Peterkin has faith in a simple idea: when medical professionals study literature or poetry together, they realize that their interpretations may differ, and in that process, they learn something about the uniqueness of every observation and interpretation. “That teaches us a certain humility, that when you think you are on the same page with your patient because you are using the same language or terms, [it] doesn’t mean you are on the same page.”
We hear from experts and scholars on the nature of storytelling and how it can be integrated into clinical practice. But one of the core techniques of narrative-medicine training is revealed on the several occasions when we’re asked to take a few minutes and compose a story riffing off a prompt. Peterkin has authored a book about the technique that includes more than a thousand possible prompts, ranging from the open-ended to the more specific and provocative: one might invite the practitioner to write a story about informing a patient of an error, while another might suggest writing about a time when they could not meet the expectations of someone very close to them.
It quickly becomes apparent that, whatever the prompt, many of us find our minds going to troubling, even painful moments in our lives. Some participants choose not to read their spontaneously generated writings because the stories are too personal or harrowing. It wouldn’t be right for us to recount the stories of other participants here—indeed, one of the things Peterkin preaches is obtaining consent to tell the stories of patients—but we can relate those we wrote ourselves, which are in many ways typical of the group’s in their self-disclosure. One of us recounts a memory from the Middle East in which local medical staff flipped over the naked body of a slain reporter so that photojournalists could snap pictures of a gaping bullet exit wound. The other speaks of the Canadian socialized medical system’s failure to provide adequate care for his ill son and of his family’s desperate journey to Buffalo for service.
Whether or not we read our stories aloud, all of us are quickly becoming witnesses to the suffering of others. “We’re really deliberate in making it clear that it is not meant to be therapy,” Peterkin says. “You mustn’t overdisclose because this is a professional setting; these are your colleagues. You can’t take back what you’ve said. But I guess people get quite moved by some of the workshops or take it to a deeper place. And we think that’s fine. We just hope that they can observe it and manage it or discuss it in the group if something very intense happens.”
The resemblance to therapy is nonetheless undeniable. In the room, it’s impossible to ignore the intensity as the stories participants scratch in their notebooks suddenly become alive, vivified by the surprisingly intense emotions they reveal. Listeners’ faces reflect everything from joy to anguish in others’ stories: for some, tears well up. Surrounded by suffering in their professional lives, health professionals are trained not to impose their personal emotions on their patients. But nor are they often encouraged, in the workplace, to reflect openly with one another about their feelings. This may not be therapy, but it has the feel of catharsis.
In 1948, Life magazine published W. Eugene Smith’s classic photo essay “The Country Doctor,” which caught medicine at a turning point. His subject, Ernest Ceriani, tended to a rural community around the town of Kremmling, Colorado. Ceriani delivered babies, set bones, and his tiny hospital was equipped with an autoclave to sterilize instruments and an incubator for newborns.
But his black medical bag symbolized something else: Ceriani spent considerable time outside of his office and hospital, tending to people where they lived. He knew most of his patients, and they knew him. When he delivered a baby, set a bone, or syringed the wax from an old man’s ear, he was not just performing a medical procedure: he was applying his healing touch to a human being he had known before the clinical encounter and would continue to know long after. He heard their stories; he knew their stories; he was part of their stories.
Many of us still carry around an image in our heads of what a doctor should be, and it is someone like Ceriani. The image was minted at an inflection point in the history of medicine, when many doctors were still personally devoted to their patients as individuals and the state of the science meant they were also getting very good at fixing many specific things. Vaccination, antibiotics, and other new drugs led to longer and healthier lives. The country doctor was a familiar face, appearing at the door with all the power of twentieth-century science in his bag. It is an image cherished not only by many patients but by doctors too, and it continues to motivate medical-school applications today.
But most of that has changed. Sophisticated imaging techniques such as PET scans and MRIs have surpassed the stethoscope and thermometer. Specialists and subspecialists have crowded out generalists like Ceriani. The scale of modern medicine has become less human and individual. The practice of committing every clinical interaction with a patient to a computer dominates American medical care and is creeping north of the border. Electronic health records, or EHRs, require physicians and other medical professionals to follow preordained scripts, which often keeps physicians’ eyes on screens rather than on patients as they fill out forms that are then kept in digital databases.
“I think that injures the patient, but it also injures the doctor in terms of the connection, the mindful presence, the being with the patient,” Peterkin says. “The eye for detail is something physicians always had before technology. The way the patient was sitting, their habitus, their facial expression, whether they were making eye contact, that was all vital information that some doctors don’t use anymore.”
What physicians call rounds—visiting patients in their hospital beds—is gradually being replaced with a few minutes spent in a boardroom, analyzing data, with the patient nowhere in sight. Yet the shift doesn’t necessarily ease doctors’ burnout. There is also little benefit to patients: one recent American study found that only in about a third of studied encounters did doctors try to find out what their patients’ concerns were during appointments, and even when they did, most doctors interrupted the patient after just eleven seconds on average. And other studies have shown that, left to their own devices, patients don’t run out the clock: they take an average of less than a minute to tell their stories.
The difference between the kind of listening espoused by narrative medicine and that used in modern clinical medicine is vast, advocates of the former say, but if you watched both kinds happen right in front of you, you might not be able to detect it. For example, in a regular clinic, patient Jones might have ten minutes to answer some rapid-fire questions before leaving with a prescription. In a clinic run by someone attuned to narrative-medicine practice, Jones’s doctor might perform the same quick data dredge, but they would also be paying close attention to how Jones said the words and what the words might mean when considered one by one or phrase by phrase, taking the patient’s history beyond a symptom-based search for positive or negative answers and into a larger field of meaning.
To be more concrete, say patient Jones has chest pain and ends up in the emergency department, where two doctors interview her. At the end of that process, the traditional doctor may describe Jones to their colleagues as “a thirty-nine-year-old with central chest pain described as a ‘tightness’ radiating to the left arm, associated with shortness of breath, nausea (no vomiting), and diaphoresis.” This kind of approach is, at bottom, a technical one—like the work of a mechanic when the body, a biological machine, is broken. The doctor attuned to narrative needs the same ability to master information, but also takes the time to elicit details like the fact that Jones is a high-school chemistry teacher who is frustrated that she didn’t get to do a fun experiment with her grade eleven students today because of her condition. For that doctor, the job is more than having information about the broken part, it’s about using the metonymy of personal (and medically useless) detail in order to better connect with and treat a patient.
If the latter sounds somewhat counter to your experiences in doctors’ offices, you’re not alone. Even medical students recognize that narrative medicine goes against the grain of their training. Some resist what they regard as a waste of the precious time necessary to master a vast corpus of medical knowledge. Who cares about an experiment with kids when this woman’s having chest pain? some might ask. You never know, the narrative-trained doctor answers; hearing about Jones’s life allows them to learn something that may be irrelevant in a clinical sense but is nevertheless meaningful because it helps them understand their patient. And, because Jones is being recognized as a person and not just as the bearer of a disease, she may be more likely to understand and accept the advice she is given.
“The big thrust in medical education in the last decades or so is evidence-based, which is really all about the generalities of disease,” Peterkin says. “You’re looking for common factors. I think that the remedy that poetry and narrative and even visual narrative bring is that they are about what is unique and particular. We make the distinction between disease and illness: illness is the lived experience of that disease, and that is going to be different for each person.”
Narrative medicine is part of a broader movement called the health humanities, which aims to integrate appreciation for the arts into the education of doctors and other health professionals. The radical idea is that students, in the course of their training—and later physicians, nurses, physiotherapists, and occupational therapists, in their practices—should pause from exclusively reading textbooks and medical journals to read great literature, ponder poetry, develop a capacity to analyze the visual arts, and even dance. In doing so, they would be trying to achieve a better mental balance while also developing listening skills that allow their patients’ stories to find space and flourish.
As she studies her own pilot project, Toubassi is getting feedback from her medical residents: she has heard some say they are no longer alone with their fears. Peterkin cites the work of University of Toronto psychologist and professor Keith Oatley, who suggests that engagement with literary fiction and other narrative art forms increases levels of empathy. An American study found that, when medical students are exposed to the arts in their programs, they show positive characteristics such as empathy and have lower burnout, which is good for patients and for a health system that invests heavily in practitioners’ careers. Yet, anecdotally, some physicians say it is difficult to integrate narrative medicine into a system designed around short appointments and elaborate record-keeping.
Even its advocates would like to see more evidence for the value of narrative and the broader humanities curriculum in medicine. Peterkin remarks half-jokingly, “No one ever asks the bioethicists to prove what they do.” It is a frustration for him that, in an era of evidence-based medicine, the primacy of statistics can elbow the humanities out of medical-school budgets.
The humanities compete for time and space in an already overcrowded medical curriculum. An hour when medical students are engaged in self-reflection, in the study of literature or the arts, is an hour when they could be learning about the kidney, or cancer, or a new kind of medical test. Nonetheless, in an attempt by the medical establishment to counter public perceptions of physicians as unfeeling, all seventeen of Canada’s medical schools now have an element of medical humanities, at least in first year, and more than half of them weave the humanities throughout their entire programs. Some medical schools, including the University of Toronto’s, require students to maintain a “reflective portfolio” in which they are expected to process their encounters with patients and their own emotions and behaviour as emerging physicians.
At the University of Toronto, medical students themselves have taken the lead in assembling a “companion curriculum” that links case studies and coursework to readings capturing the vulnerability of patients as well as physicians. Students doing rotations in dermatology will find an article by physician-writer Atul Gawande about a TV reporter afflicted with career-limiting chronic blushing. First-year students will discover Sylvia Plath’s “Three Women: A Poem for Three Voices,” a snippet of which reads:
Today the colleges are drunk with spring.
My black gown is a little funeral:
It shows I am serious.
The books I carry wedge into my side.
I had an old wound once, but it is healing.
I had a dream of an island, red with cries.
It was a dream, and did not mean a thing.
A student will not learn how to perform an open hysterectomy by studying lines like this. But, to paraphrase American poet-physician William Carlos Williams, who is quoted frequently in the companion curriculum: you can’t get the news from poems, but men die miserably every day from lack of what is found there. Listening to some of the people in the narrative-medicine workshop, you get a sense of discontent from lack of what is found in poems. For them, medicine is losing its humanity.
The advocates of narrative medicine claim the approach can translate directly into benefits for patients. Peterkin’s colleague, Michael Roberts, describes a patient he calls “Henry” who suffered excruciating pain. Managing the side-effects of increasing doses of opioids and the risks of addiction became a daunting problem. Roberts says he decided to share with Henry a poem called “Wild Geese” by Mary Oliver, which reads in part:
You do not have to be good.
You do not have to walk on your knees
for a hundred miles through the desert, repenting.
You only have to let the soft animal of your body
love what it loves.
Tell me about your despair, yours, and I will tell you mine.
He says that Henry began writing his own poems after that and has since been able to manage his pain with less powerful opioids. When challenged about whether this creative outlet was really responsible for the improvement in Henry’s health, Roberts holds firm, maintaining that poetic expression is “a better means to deal with the suffering aspect of pain.” But that, again, is anecdote, not evidence. Depending what philosophical side you’re on—humanistic or evidence-based—anecdote either matters or is intellectually half-baked.
One thing the workshop clearly does is disturb the placid waters of professional demeanour. Toward the end of the four days, the exercises move beyond reading, writing, and talking, to something more physical. For people who deal all day with the bodies of others, health professionals can be remarkably Cartesian, ignoring their own physical responses to the challenges and strain of their days.
L. J. Nelles, a psychotherapist and acting teacher, divides the atelier group in two. We face one another in pairs across a drab group-therapy room in the hospital’s department of psychiatry and mental-health services. One side is instructed to walk slowly toward their stationary partners on the other side until the partners give the signal to stop. In most cases, the signal comes when the pairs are about a metre apart. Perhaps due to miscommunication, Toubassi, whose professionalism is not enough to hide a natural shyness, ends up nose-to-nose.
“The instruction was to stay at wherever you are for the next minute,” Toubassi later recalled. “We both stood there in extreme discomfort. I contemplated whether I should step back—maybe she didn’t intend for me to be this close—you go through all of the mental exercises. And, when it was over, she explained that it had been an error, that she never intended for me to get as close as I did, and that it was uncomfortable for her also. Which caused tremendous guilt, of course. I felt like I had violated her personal space. It was disconcerting.”
Reflecting on this later, Nelles says that what Toubassi had described does not surprise her. “Part of the objective is to build an awareness of what happens to me when I am uncomfortable and how can I stay in that uncomfortable place and regulate myself. Is it possible to do that, or am I shutting down when I am uncomfortable?” The exercise is designed to help practitioners deal with difficult encounters. Nelles explains that she does not count it as a success if the exercise was disconcerting to Toubassi, but “what might be successful was her knowing in the future: ‘I need to really be sure that I am not allowing myself to go beyond my own internal boundaries.’”
And that is close to what Toubassi did, in fact, take away. “If I were in the same situation again, I would not stand there for the whole minute,” she says. “I would say, ‘This is too much; I’m going to step away.’”
Perhaps, if doctors were better able to manage their own boundaries, partly through workshops like this, they might not be so prone to burnout. Perhaps, if they didn’t feel the need to be perfect, or to never show weakness, or to continue to be a good soldier in impossible conditions, maybe they could better tolerate the frustrations of their patients. “A lot of doctors are taught to be very stoical about their own needs and sensations and then they impose that on their patients,” says Peterkin. “They don’t like patients who complain. But why not complain if you are in pain or you don’t like what you are getting?”
In the final session of the workshop, we are once again given paper, coloured pencils, and other art supplies. This time, we are invited to convey our impressions of the entire atelier. One person draws a monochrome hospital bed with a colourful cityscape pictured through a window and a word list beside it: “robin lark tomato bluebell potter potted alone . . . ” Another pictures knitting needles working a colourful rectangle and connected to skeins of different coloured wool marked “communication skills,” “family follow-up,” “doctor and patient relationship,” and so on. Others are pure abstraction. There is a sense, in the room, that the participants have found common cause, sympathetic brethren, and perhaps techniques they plan to deploy when they return to their hospitals and clinics. Palpable also is an air of apprehension, the knowledge that, from the moment they go back to work, they will be like missionaries in a foreign land, proselytizing a strange, disruptive faith.
If her clinic life sounds impossible, Diana Toubassi’s home life doesn’t offer much relief. She has two boys, ages seven and five. “I’m primarily responsible for school drop-offs and pickups, dinners every day,” she says. “My husband is an internist. When he’s on service, it’s equivalent to being a single parent. The past week in particular made me want to bend the laws of physics.” Her mother had just been admitted to the hospital with encephalitis—an inflammation of the brain. Yet the clinic remains insatiable and demanding: “Even if your patients are loving and empathic, they deserve to have a physician who cares about their needs first.”
Although narrative medicine has begun to command a small purchase in our health care system, it remains no more than a fledgling, struggling to take flight. It is the province of practitioners who, despite the mighty forces of modern industrial-scale medicine, still remember the human values that drew them into the health professions. It is a place of sanctuary and restoration for some of those experiencing burnout who worry that, in the epic struggle for the mastery of disease, their patients have somehow been neglected. It aims to bring a rounded humanity back to health care—but that is a Sisyphean labour.
“There are many like me, including those at the resident and trainee stages,” Toubassi says. In her case, narrative medicine isn’t enough to fix burnout and the impossible physics of the clinic, but the atelier “helped [me] see a new way forward. I don’t know yet which path to take, but I know how to find out which path to take, and that is to take more time to think and reflect and write.” She intends to find a place for her own need for story. As a younger woman, she says, she wrote a lot of “self-reflective poetry.” She wonders aloud if her “life right now might have turned out to be more in line with my personality and constitution,” which is “introverted and reflective—more so than medicine allows us to be.”
She is thinking about changing her practice one day, perhaps leaving the “clinic treadmill” and moving into home-based palliative care, where the emphasis is much more clearly on the patients and their stories rather than on the disease.
“I also can’t imagine myself doing what I’m doing now for another thirty years,” she says, her humorously conspiratorial demeanour shifting into a kind of weariness. “You realize that, if I’m working this hard to meet a particular standard at work, the consequence of that is I have nothing left over for my kids. It’s not one specific encounter. It’s the realization over time that it’s taking a toll . . . I’m not sure I’m willing to permanently pay.”
Her story reflects the crisis modern medicine faces in its “workforce”—individual people, many suffering from burnout, struggling to meet the demands of caring for other human beings in a system of mass-produced medical care. Bringing the discipline back to the human values that it has lost is a vaulting ambition. But, unlike yoga or mindfulness or exercise or a hundred other ways for health professionals to survive and overcome the rigours of their practices, narrative medicine holds the promise of changing health care itself—in small, incremental, but ultimately human ways.
