Narrative Medicine

Narrative Medicine Monday: Having and Fighting Ebola

July 1, 2019 No Comments

I wrote yesterday about how I attended a summer institute in Paris that focused on health beyond borders. The final keynote speaker was Dr. Craig Spencer, who shared his work rescuing and treating migrants in the Mediterranean.

Dr. Spencer has worked extensively in global health, and in 2015 wrote an essay published in The New England Journal of Medicine about contracting Ebola when he was treating patients in Guinea. He was a clinician who became a patient, fighting for his life.

In Spencer’s piece, he outlines how the “Ebola treatment center in Guéckédou, Guinea, was the most challenging place I’ve ever worked.” Though there was no clear breach of protocol, Spencer still returned home having contracted Ebola, becoming “New York City’s first Ebola patient.” Spencer shares both the anxiety and compassion he felt in caring for patients with Ebola: “Difficult decisions were the norm: for many patients, there were no applicable algorithms or best-practice guidelines.”

Dr. Spencer shares how, back in New York, after “the suffering I’d seen, combined with exhaustion, made me feel depressed for the first time in my life.” Though immediately presenting to the hospital the moment he exhibited any sign of illness or elevated temperature, Spencer is vilified in the media, his activities upon returning home scrutinized and “highly criticized…. People excoriated me for going out in the city when I was symptomatic, but I hadn’t been symptomatic — just sad. I was labeled a fraud, a hipster, and a hero. The truth is I am none of those things. I’m just someone who answered a call for help and was lucky enough to survive.”

Spencer calls out the panic that ensued after his diagnosis, how politicians “took advantage… to try to appear presidential instead of supporting a sound, science-based public health response.” He points out that “At times of threat to our public health, we need one pragmatic response, not 50 viewpoints that shift with the proximity of the next election. Moreover, if the U.S. public policy response undermined efforts to send more volunteers to West Africa, and thus allowed the outbreak to continue longer than it might have, we would all be culpable.” Spencer notes not only the misguided response to his own infection, but also the ripple effects this policy could have had on the outbreak worldwide. His is a cautionary tale of how a response to any public health situation must be grounded in steady pragmatism and based in scientific fact. Lives depend on it.

Writing Prompt: Dr. Spencer shares how, after witnessing significant suffering through his work with Ebola patients, he felt “depressed for the first time in my life.” If you are a medical provider, have you experienced similar secondary trauma? How did this manifest? Where did you find support? Alternatively, consider that Spencer urges us to “overcome” fear. Reflect on what you are fearful of, from a public health standpoint or otherwise. Is it a rational or irrational fear? How might it be overcome? Write for 10 minutes.

Narrative Medicine

Narrative Medicine Monday: Hospital Writing Workshop

May 27, 2019 No Comments

Poet and physician Rafael Campo describes the magic that can occur in a “Hospital Writing Workshop.” Campo starts the poem at the end of his clinical workday, “arriving late, my clinic having run / past 6 again.” Campo is teaching a workshop for “students who are patients.” He notes the distinction that “for them, this isn’t academic, it’s / reality.” These are patients with cancer, with HIV, and Campo is guiding them through poetry and writing exercises to search for healing and respond in a unique way to their disease and suffering.

Campo outlines his lesson, asking the students to “describe / an object right in front of them.” Each interprets their own way, to much poignancy. One student “writes about death, / her death, as if by just imagining / the softness of its skin … she might tame it.” In the end, this poem is about the power of poetry and art for both the patient and the medical provider. It’s about how something as simple as a writing workshop can cause us to pause, “take / a good, long breath” and move through suffering to a kind of healing, to a kind of hope.

Narrative Medicine

Narrative Medicine Monday: My One, My Only

May 20, 2019 No Comments

In the latest issue of Brevity, writer Michaella Thornton explains how she answers strangers about “My One, My Only.” At the grocery store with her toddler daughter, someone will invariably ask, “Is she your only child?” Thornton understands there are things that “give us away,” like “the way I narrate our grocery trip.”

When “someone asks the ‘only child’ question” at checkout, Thornton recalls the years of infertility treatments she endured: “Instead of conceiving a baby by a glacier-fed lake, we pray at the altar of reproductive medicine and lost causes.” Thornton wonders at it all, noting that the “human egg is a redwood among the rest of our sapling-sized cells. Think of the size of a period at the end of this sentence—that is the size of a human egg.”

She relays the grueling aspects of her experience with infertility treatments, the “pin-pricked stomach,” the “loneliness together” she endures with her husband. In the end, though, “as the doctors put my organs back into my body, as I throw up into a kidney-shaped pan” she is “crying over and over again to my newborn daughter, ‘I love you. I love you so much.'”

In this flash essay Thornton uses a moment with a stranger, an intrusive question many feel compelled to ask, to convey her experience with infertility, with IVF treatments, with the miracle that is her one and only child. She notes the “inadequacy of the question” strangers pose, and, in this short piece, takes us with her through “sublime sadness and joy.”

Writing Prompt: Have you had a stranger comment on the number of children you do, or don’t, have? How did you feel, what thoughts did it trigger when you received this question? Have you or someone you know struggled with infertility or are you a physician who treats this? What is it like for a patient to go through this treatment? Write for 10 minutes.

Narrative Medicine

Narrative Medicine Monday: History Taking in the Anatomy Lab

May 13, 2019 No Comments

Bethany Kette writes about “History Taking in the Anatomy Lab” in the latest issue of JAMA. Kette describes how in medicine we almost always start with the history of the patient, then move on to the physical exam. Kette notes though that “there is one time in our medical careers when we are instructed to perform the most thorough physical examination possible without learning so much as the patient’s name:” that of dissecting a cadaver in anatomy lab.

Now, fifteen years removed from that anatomy lab and ten years into my primary care medical practice, I can attest to the value of history-taking in a relationship developed over time: “It is a closeness and privilege that can provide purpose and meaning to routine acts of medical care.” Yet as medical students learning anatomy through the very intimate process of dissection, we receive very little information about our donors, only their age and cause of death.

In order to better understand the life of the woman who donated her body, Kette created the Obituary Writing Program at Georgetown. Kette developed the program with input from the Literature and Medicine Track director (how great that this is a track in a medical school!) and an obituary writer for the Washington Post. The result allows interested medical students to craft a real narrative about their donors, discover stories “that reveal a life.”

Kette interviews her donor’s son and learns that the woman was a “small-town farm girl” who graduated from Georgetown University School of Medicine: “She had literally stood in my footsteps in the same formaldehyde-scented labs in which I had spent the past year with her as my teacher.” The woman eventually retired from medicine to become a painter and was a “devout Catholic;” her faith informed her drive to help others. The medical students who participated in Kette’s program read the obituaries they had written during a ceremony at the end of the year, part of expressing gratitude to the donors themselves and to their loved ones for the gift of the donor’s bodies.

Kette’s program puts “history in its rightful place before the physical— students now interview the families of their donors before making the first cut in anatomy lab.” It also serves as a reminder to those of us well into medical practice that a person’s rich history, their life lived outside the hospital bed or exam room, is what we’re striving in medicine to help them return to, and what matters regarding their health, in the end.

Narrative Medicine

Narrative Medicine Monday: My Grandmother’s Body

May 6, 2019 1 Comment

Author Anna Leahy writes about “My Grandmother’s Body” in Sweet, an online literary journal. Leahy describes the funeral director, who arrives when called, wearing “his funeral-director suit.” The professional Leahy witnesses is experienced, noting “the stairs’ ninety-degree turn / without changing pace.” The director asks “if he might / lift her himself to carry her downstairs” and Leahy finds a kind of comfort in this. She thinks, “What a relief / to think of her last moment at home, cradled / in the man’s arms.”

Leahy’s poem is a snapshot of a moment and a man, revealing the funeral director’s practicality and reverence for his work and the relief this provides for those who love the deceased. We often reflect on the last moments right before a person dies, but Leahy’s poem, like Lisa Knopp’s “Leaving the Body,” focuses instead on those just after: the weighty finality, the people who interact with the body and the importance this holds for those still living.

Writing Prompt: Have you been near a dead body, either of a loved one or of a patient? What was the experience like? How was the body retrieved, and to where? How did you feel about how this was accomplished? Alternatively, think about your impressions of the funeral director as described by Leahy. Consider writing the scene from his point of view. Write for 10 minutes.

Narrative Medicine

Narrative Medicine Monday: Going Blind

April 22, 2019 No Comments

German poet Rainer Maria Rilke writes of a nearly-blind woman at a party in “Going Blind.” The poem provides an observation of this woman, as if we were in the room with her. At first she looks “just like the others.” As someone who works in healthcare, usually it is obvious when a patient is sick. But more often than I think we acknowledge, we can’t always tell when a person is suffering or ill. There are many diseases or ailments that might not be readily apparent at first glance.

The narrator does soon note subtle differences in the woman: “she seemed to hold her cup / a little differently as she picked it up.” Rilke focuses on the woman, as the rest of the party moves away: “I saw her. She was moving far behind”. He notices her eyes, “radiant with joy, / light played as on the surface of a pool.”

There is a turn in the poem here, where the narrator moves from seeing her smile as “almost painful” to realizing that once “some obstacle” is “overcome, / she would be beyond all walking, and would fly.” It ends on this hopeful note, the idea that this woman will persevere, and in so doing, move beyond all others and the world’s norms.

Interestingly, here is another version of Rilke’s poem, translated by Margarete Munsterberg in 1912. Reading various English translations of poetry always makes me wonder at what might be missing when we don’t read a piece in the author’s native tongue. Did you get a different sense of the themes or of the woman from reading these translations?

Writing Prompt: Think of a time when one of your senses was limited. What did it feel like to be restricted in this way? Did you note other senses altering in response? Have you observed a patient or a loved one losing their hearing, their sight, their ability to taste food? What did you notice? Alternatively, consider writing from the perspective of the woman going blind. Imagine what she sees, what she feels. Write for 10 minutes.

Narrative Medicine

Narrative Medicine Monday: Introduction to Asthma

April 15, 2019 No Comments

Poet Susan Eisenberg gives an “Introduction to Asthma” for the parent and practitioner. Her son suffers an acute asthma exacerbation, the “Cacophony rising in his lungs, / oxygen level falling”. Eisenberg lets us know that her young son “believes / he will die” but also exposes the reality that “Anyone who wants to kill me he says / would have to kill my Mom / first.” She will follow her son anywhere, even Heaven or Hell. The reader’s own breath catches on this truth, as Eisenberg hugs “his eyes in mine / and breathe for both our lives.”

Writing Prompt: Try reading Eisenberg’s poem out loud. What do you notice about her choice of words, line breaks and white space? Think of a time you or a child or friend or patient experienced an acute and sudden medical emergency, such as an asthma exacerbation. Describe what you hear, what you see. Write for 10 minutes.

Narrative Medicine

Narrative Medicine Monday: Perchance to Think

April 8, 2019 No Comments

A couple of years ago I was driving to work when I pulled up behind a car that had a red bumper sticker with white block lettering: “THINKING IS WORK.” When I arrived at my desk that day I wrote this statement on a Post-it note in my barely legible handwriting and moved on with my busy primary care clinic day.

Since then, I’ve had little time to ponder this idea, but it’s always been there, in the back of my mind, the Post-it still pinned to my desk bulletin board. We live in an accelerated world, saturated with information at our disposal. Though I’ve noticed, in my life and in medicine, there is less and less time to access this information, to research, or just think.

Dr. Danielle Ofri’s latest piece in the New England Journal of Medicine highlights this issue. In “Perchance to Think” Ofri outlines a common problem among primary care (and I’m sure all speciality) practices – there isn’t time allotted to actually think about a case. Ofri gives the example of a patient with slightly abnormal lab tests ordered by another physician. As the primary provider, Ofri is then tasked with sorting out whether this patient has adrenal insufficiency or rheumatoid arthritis while also addressing his six known chronic conditions. Ofri notes that, for primary care physicians, “adrenal insufficiency resides in the wobbliest, farthest-flung cortical gurus I possess.” Ofri quickly realized, as her “patient stacked his 15 medications on my desk – all of which needed refills, and all of which could interfere with adrenal function” that what she really needed to give this patient the best care possible was “time to think.”

In medical school we have time to study, to think deeply as we learn the intricacies of the human body and how to treat illness when things go wrong.

Once out in practice, though, there isn’t the luxury of that time to ponder. More and more demands are put on the physician, be it “last week’s labs to review, student notes to correct, patient calls to return, meds to renew, forms and papers spilling out of my mailbox.” Ofri eventually gives up, gives in to the time constraints of the system, and refers the patient to endocrinology to sort out the adrenal insufficiency issue.

As a primary care physician myself, this is an all too familiar dilemma. Ofri recognizes that this situation is untenable to all involved: the patient, the primary care provider, and the specialist. “In the pressurized world of contemporary outpatient medicine, there is simply no time to think. With every patient, we race to cover the bare minimum, sprinting in subsistence-level intellectual mode because that’s all that’s sustainable.”

Ofri eventually takes the time to listen to a podcast on adrenal insufficiency, addend her note and contact the patient with a more cogent plan until he’s able to see endocrinology. But this was time that isn’t usually allotted or even available in a normal physician’s busy life: “many of our patients’ conditions require — time to think, consider, revisit, reanalyze.”

Ofri laments there’s no way to code for contemplation, but asserts that giving physicians the time to think could improve efficiency. “We would save money by reducing unnecessary tests and cop-out referrals. We’d make fewer diagnostic errors and avert harms from overtesting. And allowing doctors to practice medicine at the upper end of our professional standard would make a substantial dent in the demoralization of physicians today.”

Here’s to considering a more wholistic way of practicing medicine, one that includes the intellectual rigor that attracted most physicians to medicine in the first place. After all, thinking is work.

Writing Prompt: Do you think giving physicians time to think would make a difference in efficiency? Have you experienced a case similar to Ofri’s, where if you had a little more time to research, you could manage the case yourself? As a patient, do you notice the time pressures on your physician? Describe what it’s like to experience this as a patient, as a provider. Write for 10 minutes.

Narrative Medicine, Writing

Narrative Medicine Monday: The Fall of Icarus & Musee des Beaux Arts

March 18, 2019 No Comments

I’m just finishing up a wonderful poetry course taught by Michelle Penaloza, and recently explored ekphrastic poetry. These are poems written in response to a piece of art. She had us read two different poems written about Brueghel’s “Landscape with the Fall of Icarus.”

I found the poem by W.H. Auden relates to medicine and illness in a way, a commentary on how suffering exists in the world while the rest of life goes on. Auden observes how well the “old Masters” understood suffering, “how it takes place / While someone else is eating or opening a window or just walking dully along.” For people who are struggling with illness, especially chronic illness, this normalcy and indifference of the rest of the world can seem almost as an affront. When dealing with a difficult diagnosis, it can be painful to see the world advance as it always has, even though it must. In Icarus’ case, Auden notes that “the expensive delicate ship that must have seen / Something amazing … / Had somewhere to get to and sailed calmly on.”

Writing Prompt: Consider writing your own ekphrastic poem or free write in response to Breughel’s “The Fall of Icarus.” What do you notice about the painting and how might you expand on its meaning? If you’re a medical provider, have you seen others suffering but, for whatever reason, had to move “calmly on?” Do you think medical training or the medical system contributes to this type of response? If so, how? As a patient, have you experienced an illness or suffering while the rest of the world goes on, unaware? How did that make you feel? Write for 10 minutes.

Narrative Medicine

Narrative Medicine Monday: Burnout in Healthcare

March 11, 2019 No Comments

I’ve wanted to attend Columbia’s Narrative Medicine workshops for years. Life finally aligned to make that possible this past weekend as I joined professionals from different disciplines gathered to address “Burnout in Health Care: The Need for Narrative.” As a wellness champion for my physician group, this year’s topic was particularly pertinent to my work and practice.

The conference consisted of lectures from leaders in the field of narrative medicine alternating with small group breakout sessions. I was fortunate enough to have Dr. Rita Charon, who inaugurated the field of narrative medicine, facilitate two of my group’s sessions, which consisted of close reading and reflective writing and sharing. This format allows for in depth discussion with medical and humanities professionals, as well as time for introspection about how best to expand on learned concepts and practices when we return home.

Several takeaways for me:

Narrative can be used to address many issues in healthcare, burnout among them. I’ve been facilitating a Literature & Medicine program for my own physician group, and have taught narrative medicine small group sessions to resident physicians, but am inspired to do more of this work to expand the reach to medical professionals and patients. Dr. Charon encouraged us to disseminate the skills deepened through the humanities, that these are what’s missing from a health care system that has become depersonalized. Skills learned through narrative medicine can improve team cohesion, address moral injury and bias.

Writer Nellie Herman offered Viktor Frankel’s words: the primary force of an individual is to find meaning in life. Herman showed us how writing can help us find that meaning, giving shape to our experiences, our memories. Harnessing creativity can be particularly important for those of us who experience moral injury because “when we write, we externalize what is inside us.” Through writing and sharing, we’re making a commitment to something, a raw, less mediated version of events. Through this vulnerability we connect to others; though difficult, that’s what makes it valuable.

Dr. Kelley Skeff approaches burnout and narrative from a physician educator’s perspective. It is not lost on anyone who has been a medical resident or trained them that “we have trained people to take care of patients, even if it kills them. We have trained people to keep quiet.” Skeff offers us this quote from Richard Gunderman: “Professional burnout is the sum total of hundreds and thousands of tiny betrayals of purpose, each one so minute that it hardly attracts notice.” He implores us to combat the code of silence and ask ourselves and each other: What’s distressing you?

Maura Spiegel contends that “narrative language can proliferate meaning.” Spiegel used film clips to show how we can gain access to our own experience. In watching a film, we’re not called upon to respond, but we are often running our own parallel stories along with the movie. Spiegel showed clips from the movies “Moonlight,” “Ikiru,” and “Philadelphia,” and the documentary “The Waiting Room.” In that final clip we saw a young doctor run a code in the Emergency Room where a teenage boy dies. He then is tasked with telling the family the devastating news. He seeks out support from his colleagues on how to do this. Spiegel notes a quote from Jonathan Shay: “Recovery happens only in community.”

I was bolstered to hear about he the work of Craig Irvine and Dr. Deepu Gowda, who discussed how to create a culture for narrative work, both in academic institutions and in clinics. Dr. Gowda explored using narrative medicine sessions with the entire medical team (including nursing staff, administrators, physicians) and found improved teamwork, collaboration, and communication. Both suggested building a team of people interested in narrative work, be they art historians, philosophers, writers, physicians, or psychologists.

More than anything, this workshop churned up ideas and inspired methods that could be used at my own workplace to use narrative work to address burnout. I came away encouraged and connected to colleagues who are interested in the same questions and in addressing the daunting problem we face in our current health care system. Ultimately, we want to “allow voices to be heard, and address suffering, not only of patients but also of medical providers.” This work is challenging, but necessary. As Tavis Apramian noted in the final lecture of the conference, “the meaning that we draw from other people is the reason to keep going.” That it is. I hope to continue learning about this important work and am grateful for the faculty at Columbia who inspire tributaries (or rhizomes!) of narrative and creativity throughout the medical world.

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