In The Birth of the Clinic, Michel Foucault wrote, “It is often thought that the clinic originated in that free garden where, by common consent, doctor and patient met, where observation took place, innocent of theories, by the unaided brightness of the gaze, where, from master to disciple, experience was transmitted beneath the level of words.”(1) Foucault spent the rest of the book obliterating that statement. And in various ways, the students of the Sophie Davis School of Biomedical Education at City College in New York are debunking the clinic logic, too. As one of their first-year requirements, they must complete a seminar in narrative medicine.
“Last summer, my colleagues and I received a small grant to run narrative medicine workshops at Sophie Davis this spring,” Sam Barrow, an adjunct instructor at Sophie Davis, explained to me. The program has three main components: seminars – which include close reading, reflective writing, and free-flowing discussions – with the first-year students; workshops with faculty and staff; and a mentoring program that trains second- to fifth-years to work with the youngest students at the college.
Sophie Davis is unique in that it offers a seven-year joint BS/MD program for students just out of high school. Currently, it’s a seven-year program, the final two years of which students spend at a partnering medical school. The program, which has been operational for more than for 40 years, has a social service requirement, to which all incoming students must agree, that upon completing their residency training, graduates work full-time as a primary care physician for two years in a health center with a designated shortage of primary care physicians. In keeping with this social service emphasis, students are immersed in the quest to make the field more compassionate and individualized by employing narrative work in their practice.
Narrative medicine, a field that solidified in the early 2000s out of the “medicine and humanities” movement that rose to prominence in the 1970s, could be thought of, most humbly, as the discipline of telling stories about illness from multiple perspectives, which culls its pedagogy from the fields of literary theory, phenomenology, philosophy, oral history and social sciences. Sounds fairly innocuous, no? At first glance, narrative medicine might appear to be a slight encroachment of the “soft” sciences upon steadfast medical empiricism – or, dare I say it, “some New Age shit.” But those involved in the field – students, teachers and allies – are proving that narrative medicine poses both a credible threat and a powerful alternative to the medical-industrial complex, which began with the corporate takeover of US health care in the late 1980s and early 1990s, and has only become more institutionalized since.
Notes From the Classroom
Harris Hall, the gothic building that houses the Sophie Davis school, has no gardens, but it is loaded up with conference tables. It is around one of these tables that I had a chance to speak with a few first- and second-year students who had already completed their narrative medicine requirement under Barrow’s instruction. Students in the first-year course are assigned readings of poetry, fiction and nonfiction – and charged with writing essays once every two weeks. Not every reading is directly related to medicine, though many are, but each has a strong narrative voice.
I polled the students on their favorite readings of the semester, which ranged widely from the poetry of Rafael Campo (“What The Body Told”) to T. Benjamin Singer’s Sublime Mutations and Atul Gawande’s “When Good Doctors Go Bad.”
Seventeen-year-old first-year MaryAnne Marshall, who grew up down the block from the Montefiore Medical Center in the Bronx, was particularly taken with Audre Lorde’s Cancer Journals. “When we read Audre Lorde, I was like ‘oh my god, I get it, she’s a black, feminist, lesbian poet,’ which to me is one of the most important things, to completely own all the components of your identity.”
Nearly all the students I talked to were involved in, or at least studying up on, medical justice issues and other intersecting social justice movements. But for 18-year-old first-year Emily Sheboy, who is the secretary for the student group Physicians for Human Rights, a love of poetry was new, and it began in Barrow’s seminar. “Before I took the class, I hated poetry,” Sheboy told me, “I hated writing poetry; I hated the word poetry. Now I write my own poetry.” This sentiment was affirmed by several students I spoke with, who said that though they were initially wary of the written and fictive elements of the class, they came to use them as tools for critical inquiry in a number of their courses, activities, and relationships.
Rita Charon, the founder of the narrative medicine movement, argues in her book Narrative Medicine: Honoring the Stories of Illness that such disciplines as poetry, literature, drama and creative nonfiction, which can seem anathema to the study of medicine, are in fact crucial to the success of the doctor-patient relationship, which in many cases is rapidly reducing to no more than a business partnership. “My hypothesis in this work,” she writes, “is that what medicine lacks today – in singularity, humility, accountability, empathy – can, in part, be provided through intensive narrative training.”(2)
“We can’t address systemic issues of injustice until we can relate to other people through moments of discomfort and vulnerability.”
Barrow, who is herself “not just a doctor,” but also an accomplished poet, a motorcycle enthusiast and all-around activist, explained to me, “We can’t address systemic issues of injustice until we can relate to other people through moments of discomfort and vulnerability.”
Rita Charon and the Origins of Narrative Medicine
Let’s backtrack a bit from faux-gothic walls of Harris Hall to the 1970s, when new interdisciplinary fields – among them bioethics, primary care medicine, professionalism in medicine and biopsychosocial medicine – began percolating in the medical community. These disciplines could loosely be said to belong under the larger heading of “medicine and humanities,” or “medicine and literature,” which is now a part of the curriculum at just about every medical school in the country.
Such movements were the bedrock of narrative medicine, whose founder, Charon, was toying with these ideas when she first started teaching at Columbia, while she finished her MD. (At the time, Charon was also going for her doctorate in English.) At this point, literature courses had already made their way into the Columbia medical school curriculum; they had been part of that curriculum since the early 1980s. Charon recalls that her theories on narrative medicine began with “a very small elective in humanities and medicine, literature and medicine. I remember I would have students over at my house at the beginning …. Once a month, we’d read a novel; we’d talk about it.” The novels discussed often had little to do with medicine, but they offered students a space to reflect on narrative devices and socialize with like-minded colleagues. Three decades later, Charon directs the Narrative Medicine master’s program at the Columbia medical school.
In her book, Charon defines narrative medicine as “medicine practiced with the narrative competence to recognize, absorb, interpret, and be moved by the stories of illness.”(2) Narrative medicine is the field that asks health care to answer the questions “Who gets to speak, and why?” Such questions reject in their framing the abstract addition that governs today’s health-care system; their answers can only be told through further action.
Around the same time, another trend was taking hold, one that would shortly devour so much of the vital relationship between doctors and patients for the sake of a bottom line. The rise of health maintenance organizations (HMOs) over the past three decades has been unprecedented. In 1981, large insurance companies (Aetna, Kaiser, UnitedHealth and friends) covered 12 percent of Americans covered by health insurance. By 1999, that number had risen to 80 percent.
“Aetna is largely viewed as one of the most stringent managed-care companies, pushing hard for cost reductions, disputing claims and questioning out-of-network services,” wrote Milt Freudenheim for The New York Times in response to the news that Aetna had bought out Prudential HealthCare for a billion dollars.(3)
The US has the priciest health care system in the world, and nowhere near the most effective.
Now the stark reality is that insurance companies, beholden to their shareholders, decide how long a doctor can meet with a patient, what quality of medicine that patient gets, and the quality of care. “Care” includes emotional and psychological support, both for the patient and the patient’s family, certain intuitions that only come from really knowing person, and may not be readily quantified. Meanwhile, Medicare reimbursement rates are calculated, roughly, according to how many lobbyists a given field of medicine has holed up on Capitol Hill. Each of these factors contributes to the fact that the US has the priciest health care system in the world, and nowhere near the most effective.
Primary care physicians pick up the slack as well – it has been well documented that they suffer from higher-than-average rates of mental illness as well as high rates of suicide, despite having access to health care. “Health policy is set by the shareholders of private insurance companies,” Charon said. “Is that what we want our health care to be?”
Narrative Medicine, From Plot to Primary Care
In 2000, Charon became the director of the first Narrative Medicine program at the College of Physicians and Surgeons at Columbia University.
Since then, narrative medicine has become increasingly popular as a pedagogical tool and a theory of medical practice. In a 2011 study published in the journal Literature and Medicine, Lindsay Holmgren and her team conducted a search in medical journals using the keywords “narrative medicine.” The search yielded more than 7,000 related writings, with 3,000 of those hits published from 2009-2011.(4) Similar programs to the one at Columbia have cropped up in medical schools throughout the country, including Brown, the University of North Carolina, the University of Central Florida and the University of Massachusetts.
The program now directs required courses for all Columbia medical students, about 160 students per year, with narrative medicine staff. Course offerings collapse the spheres of literature, psychology and science, and include a fiction workshop with novelist Chris Adrian and a graphic novel course with New Yorker cartoonist Ben Schwartz. Students can also elect to take a month-long intensive literature course with Charon. In the past, Charon has taught Anne Michaels, William Maxwell and Denis Johnson; the curriculum changes with each cycle.
Every year, Charon and her colleagues admit a group of students to the one- or two-year masters program who run the gamut from recent college graduates taking a gap year before medical or nursing school to health professionals – doctors, nurses, social workers. Then there are several students who aren’t in medicine at all; these are the poets, playwrights, visual and performance artists.
Perhaps the strongest argument narrative medicine makes for itself is in its focus on the individual patient, as a person with specific, but also effusive, pains, pasts, and agency.
Perhaps the strongest argument narrative medicine makes for itself is in its focus on the individual patient, as a person with specific, but also effusive, pains, pasts, and agency. “I write a lot about my patients,” says Charon, “I give them what I’ve written, I say: ‘ Is this what happened last Thursday? I think it is.’ And they tell me: ‘Well, yeah, that happened, but also this happened.’ And then it leads to their representing things, and so my practice has become very narrative!” Charon, with her meticulous commitment to the subtle reaches of language, the myriad social factors that determine plot and shape the reader’s understanding of it, is not only a narrativist, she’s a Jamesian.
But are such literary devices compelling outside of an English classroom and, more to the point, are they effective? The answer to this question, no doubt to the disappointment of those who associate clinics with antiseptic sinkholes of storytelling, can only be told with more anecdotes. Charon writes in her book: “A medicine practiced with narrative competence will more ably recognize patients and diseases, convey knowledge and regard, join humbly with colleagues, and accompany patients and their families through the ordeals of illness.”(5) In defense of this point, Charon recounts many personal experiences with patients, where her narrative training positively influenced some aspect of the care she was able provide, particularly with the process of diagnosis.
In her book, for example, Charon describes an encounter with a patient, Luz (not her real name) who came into Charon’s clinic with complaints of a headache for which she prescribed the patient acetaminophen. Luz also wanted Charon to sign her disability form, which she did begrudgingly, after several visits. It was 1982, at the time Charon was a medical student herself, enrolled in a seminar on Literature and Clinical Imagination, for which she was encouraged to write in personal, rather than professional, language about her clinical practice. Charon wrote uncharitably about Luz, imaging that she was a vapid fashion model who was going to cash in her disability checks so she could move to Manhattan.
The reality of the situation was quite different. When Charon met with Luz again at a later date, after thinking about her case a great deal as a result of the narrative exercise, she “asked her [about the disability form] with great interest and regard about the situation, apologizing for having brushed her off so quickly the last time.” In the ensuing discussion, Luz told Charon that she needed the disability payments so that she could eventually move her four younger sisters, her mother, and herself to Manhattan, away from a sexually abusive father and uncle they had been living with in Yonkers. Charon put Luz in touch with social workers specializing in domestic violence, emergency centers and support groups. The women moved out of Yonkers; Charon has since provided health care to three of the sisters and the mother.
When Charon describes such processes on her frequent rounds at medical institutions throughout the country, she is invariably met with some silence and then one big question: But doctors don’t actually have the time to do that, do they? Charon used to answer this question in an accurate but somewhat conciliatory fashion, explaining that spending the extra time talking to a patient and really getting to know her saves time (and money!) down the road, with, potentially, fewer required visits, an easier time formulating the diagnosis, and so forth. A typical clinic visit with a physician is 12 to 15 minutes; stretch that by even 10 minutes and, who knows, profit margins might stretch right along with it. Sometimes, Charon used to dodge the most pressing implications of the time question by explaining that a doctor is never going to be able to spend more than a few minutes with her patient, so physicians need to be as fluent in narrative thinking as humanly possible, to make sure that time is maximally efficient.
Social Justice and Narrative Medicine
Graduates of the master’s program have gone on to be sexual assault counselors, medical justice activists, and artists. They work in America’s prisons and with local DAs. Barrow herself once had Charon as a teacher; she graduated in the first class of Narrative Medicine master’s students in 2009.
“I went to medical school super naively from a South Asian feminist activist family, thinking of medicine as a tool for social justice,” says Sayantani DasGupta, who teaches the Narrative, Health, and Social Justice course at Columbia (she’s been Charon’s colleague since the inception of the Narrative Medicine program), as well as in the Health Advocacy Program at Sarah Lawrence. In college, DasGupta had been active in social justice campaigns on campus, focused in particular on anti-racism and gender justice work.
Then she went to medical school, and – surprise! – it was not like that. “I would be given a list of 10 things Dominican Americans believe in,” DasGupta told Truthout, “I’d be handed this list and told to memorize and that if I did I’d be competent in understanding this community. How patronizing is that?”
Like all the people I had talked to who are involved in the Narrative Medicine movement, DasGupta also is “not just a doctor.” She has written extensively on a wide range of issues, from transnational surrogacy in India to the racialization of the “obesity epidemic” in the US. And though she does very typical, wonderful academic things like write books and scholarly articles for medical journals, she is also a frequent contributor to the Racialicious and Adios Barbie blogs.
“I’m interested in examining power and hierarchy in medicine and using [narrative medicine] as an avenue to do that, linking theory and practice, academia and activism.”
“I’m interested in examining power and hierarchy in medicine and using [narrative medicine] as an avenue to do that, linking theory and practice, academia and activism …. What we’re saying is that you have to rigorously train people in their narrative theory as rigorously as you would train them in their anatomy, pharmacology, physiology.”
Toni Morrison famously said in her in acceptance speech upon receiving the Nobel Prize in literature, “That we die, that may be the meaning of life. But that we do language, that may be the measure of our lives.” It’s this sentiment that’s at the core of what narrative medicine does. In fact, it’s central to what all doctors do, whether they realize it or not. Without consultations, charts and medical education, there could be no health care.
It’s easy for stories to become strangers, though, when days are spent filing insurance claims, ensconced in the hum of phone calls and emails, meeting with sick patients in sessions that only last a few minutes, noticing all the while how time clicks by so painfully fast. It’s no wonder that record numbers of physicians are considering early retirement and experiencing burnout. (Thirty percent of primary care doctors ages 35-49 are planning on quitting their practices in the next five years, according to a 2012 Urban Institute study.) The demands of capitalism, ramped up to breakneck speeds of health production, offer an efficient distraction, prescriptions without end, which never cure. As Corey Rubin wrote a few months ago in Jacobin magazine on the dehumanizing calculations of the medical industrial complex, “In my Freudian (late Freud) moments of despair, I sometimes wonder if the madness of American capitalism isn’t one massive contrivance to avoid the sad finitude of the human condition.”(6) In a paranoid ploy to suppress madness in civilization, the practice of medicine has made death both the meaning and the measure of our lives.
Compared to the brisk pace of health-care operations these days, narrative medicine is slow. Its practitioners are building a pedagogical structure, but their organizing interests are broad, and not always within the narrative medicine community, or even in the medical community writ large.
“The potential for fairer, more progressive discussions about health care – inclusive of race, gender, sexuality, class, and quality of life – is taking root in these sorts of narrative spaces.”
“It’s not like I’m getting people to sign petitions to go to Kirstin Gillibrand,” says Charon, “but I know that this way of thinking about health care is a direct and powerful challenge to the ways of thinking about health care that are assumed.” The potential for fairer, more progressive discussions about health care – inclusive of race, gender, sexuality, class, and quality of life – is taking root in these sorts of narrative spaces.
As Justin Molina, a first-year at Sophie Davis, put it: “Doctors are putting aside patients just to get through what needs to be done. Narrative medicine breaks this cycle.” It’s 18-year-olds like this, who are not innocent of theory, who are already beginning to grow a more compassionate and effective health-care system.
6. Corey Rubin. “Death and Taxes.” Jacobin (February, 142014).