Narrative Medicine Monday: Hospital

Poet and essayist Marianne Boruch illuminates a scene from a “Hospital.” Her poem provides a contrast of what an outsider might experience and the reality of those who work in such a place. She notes that “It seems / as if the end of the world / has never happened in here.” For patients and their loved ones, their worst day, their worst moment, often occurs in the confines of the hospital.

The narrator expects more, a kind of signal, of “smoke” or “dizzy flaring” but instead she waits, watching people go by as if on a conveyor. She sees “them pass, the surgical folk– / nurses, doctors, the guy who hangs up / the blood drop–ready for lunch…” They are going about their day, their work. She catches them at “the end of a joke,” but misses the punch line. Instead, it is lost in “their brief laughter.”

Boruch’s reflection reminds me of Mary Oliver’s lines in Wild Geese: “Tell me about despair, yours, and I will tell you mine. / Meanwhile the world goes on.” Boruch’s poem reveals the dichotomy of a hospital: while some can be devastated, others go about their day, wearing their designated uniform of “a cheerful green or pale blue.”

When I have been a patient, or the loved one waiting for word, the usually familiar hospital is completely transformed from how it exists for me as a physician. Boruch captures these parallel worlds in her poem, and gives the reader space for reflection on their disconnect.

Writing Prompt: Think of the last time you were in a hospital as a patient, as a visitor, as a medical professional. What did you observe? How did your experience differ based on the reason why you were there? Write for 10 minutes.

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Narrative Medicine Monday: What I Learned Photographing Death

Caroline Catlin shares her riveting story of how photographing those with terminal illness gave her perspective about her own cancer diagnosis in the New York Times’ What I Learned Photographing Death.”

Catlin volunteers with Soulumination, a nonprofit organization that documents moments between critically ill individuals and their families, including the end of a child’s life. As I also live in Washington State, I had heard of this remarkable organization and the unique and thoughtful service they provide. Catlin’s piece, though, also reveals the perspective of these volunteer photographers. As Catlin describes, her role is to enter a room “ready to capture the way that love honors the dying. Witnessing these small moments helps me come to terms with my own mortality.” Her experience echoes that of many who work in the medical field. She too is a kind of caregiver for these families, wielding a camera rather than a stethoscope.

This young writer and photographer describes how in October she herself became a patient, eventually being diagnosed with malignant brain cancer. Catlin highlights how, since her diagnosis, she’s bonded with the people she’s photographing in a new way, including a teenager who shared mutual baldness: “The fact that I am sick and young has helped me form new connections with the people I am photographing.”

Catlin describes photographing the birth and death of a baby who was born with a condition that wasn’t survivable. She writes with heartbreaking clarity how “[h]e was perfect, but he did not cry,” how she captured “[h]is arm…gentle across his mother’s face — I clicked the shutter to save this gesture.”

Catlin is clear on her purpose in doing this difficult work: “When I am in those rooms, I am present with the sole goal of finding the moments within grief that feel the most gentle and human.” She also has discovered moments that speak to her own confrontation with mortality, such as when a child cries over the loss of his sister, then goes on to play near her body. She recognizes the resilience that exists in this world, that her friends and family “will also continue to live on if I die too soon.”

In the end, Catlin’s revelation is that “grief is centered not in pain but in love.” This is the lesson that she shares with us, the encouragement that “in our most horrific of moments we are met with small pricks of bright light, piercing and strong.”

Writing Prompt: In this piece, Catlin expresses how her work with Soulumination gave insight into her own experience with cancer and facing mortality. If you’re a medical provider, what has your work revealed to you about your own mortality? Alternatively, think about a time you stepped into another person’s story, during a particularly challenging time, either as a friend or family member or stranger. What did you learn from walking alongside that person, listening or observing? Write for 10 minutes.

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Narrative Medicine Monday: What almost dying taught me about living

Writer and speaker Suleika Jaouad urges us to rethink the binary nature of health and illness in her TED talk “What almost dying taught me about living.”

Jaouad, diagnosed with leukemia herself at the young age of 22, questions the narrative of cancer survivor as a hero’s journey. She recalls that “the hardest part of my cancer experience began once the cancer was gone. That heroic journey of the survivor… it’s a myth. It isn’t just untrue, it’s dangerous, because it erases the very real challenges of recovery.”

Jaouad finds herself discharged from the hospital and struggling with reentry to life. She had spent all of her energy just trying to survive, and now needs to find a new way of living amidst expectations of constant gratitude and labels of heroism. 

Her assertion is that often the most challenging aspect of a jarring interruption to life occurs after the inciting event or episode, in her case, cancer, has resolved. It is the attempt in weeks, months, years after to readjust to the daily act of living that can be the most grueling. She notes that “we talk about reentry in the context of war and incarceration. But we don’t talk about it as much in the context of other kinds of traumatic experiences, like an illness.” Jaouad urges us instead to accept that there is a spectrum of health and illness, and we should “find ways to live in the in-between place, managing whatever body and mind we currently have.”

Through writing a column about her experience fighting cancer and reentry into the world of the well, Jaouad begins getting letters from a vast array of people who relate to her story, her inspiration that “you can be held hostage by the worst thing that’s ever happened to you and allow it to hijack your remaining days, or you can find a way forward.”

Jaouad herself seems to find a way forward by sharing her story and connecting with others. Her struggle certainly resonates with me and my own recent life interruption. This concept of the nonbinary nature of well and unwell is also important for medical providers to consider. As primary care physicians, we are the ones who not only deliver a life altering diagnosis, but also who continue to care for patients long after their bodies recover or continue on with a chronic disease. I’m looking forward to reading Jaouad’s book on this topic, Between Two Kingdoms, out next year.

In the end, Jaouad concludes that we need to “stop seeing our health as binary, between sick and healthy, well and unwell, whole and broken; to stop thinking that there’s some beautiful, perfect state of wellness to strive for; and to quit living in a state of constant dissatisfaction until we reach it.”

Writing Prompt: Jaouad assures us that every single one of us will have our life interrupted, either by illness or “some other heartbreak or trauma.” Think of a a time your life has been interrupted. What was the hardest aspect for you? What was your experience of “reentry?” Alternatively, think about the concepts of health and illness. What do these words mean to you, either as a patient or as a medical provider? Write for 10 minutes.

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Narrative Medicine Monday: Having and Fighting Ebola

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.

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Narrative Medicine Monday: Hospital Writing Workshop

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.

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Narrative Medicine Monday: My One, My Only

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.

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Narrative Medicine Monday: My Grandmother’s Body

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.

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Narrative Medicine Monday: Perchance to Think

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.

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

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.

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Narrative Medicine Monday: Burnout in Healthcare

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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