Narrative Medicine

Narrative Medicine Monday : What Can Odd, Interesting Medical Case Studies Teach Us?

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Physician author Siddhartha Mukherjee writes in the New York Times about coming across an unusual case study recorded by the late Oliver Sacks. Sacks describes the case of a woman who had a “lifelong history of seeing people’s faces change into dragonlike faces.” Though not a neurologist, like Sacks, Mukherjee is fascinated by the case. A thorough evaluation, including neurological examination, M.R.I. scan and experimental treatments revealed no answer or resolution.

Mukherjee is puzzled by the inclusion in a prominent medical journal. He ponders: “There was no revelatory flourish of diagnostic wizardry….. It was as if Sacks lobbed the puzzle into the future for someone else to solve: In some distant time, he seemed to imply, another neurologist would read this story and find resonances with another case involving another patient and complete the circle of explanation.”

Mukherjee notes that Hippocrates, the father of medicine, himself outlined case histories that remained a mystery without a clear diagnosis. Mukherjee recognizes that medicine has changed: “But over the years, as the discipline of medicine moved concertedly from descriptive to mechanistic, from observational to explanatory and from anecdotal to statistical, the case study fell out of favor. As doctors, we began to prioritize modes of learning that depended on experiments and objectivity.”

Mukherjee seems almost melancholy about the demise of the case study and what this omission means to medicine: “I miss the acuity of the observations, the scatter plots of symptoms that cannot be put into neat boxes, the vividness of description…. I worry that unknown unknowns will go unwritten — that buried within such cases, there might have been a cosmos of inexplicable observations that might, in turn, have inspired new ways of thinking about human pathology.” What role might narrative medicine play in honing the observational and descriptive skills of medical professionals that Mukherjee notes is lacking in today’s medical world?

Writing prompt: Do you agree with Mukherjee that something is lost in devaluing the case study? If so, what is lost? Think of a patient or family member whose illness was unique and perhaps undiagnosed. Write their case study, a detailed accounting of their history of illness. Write for 10 minutes.

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Ramblings

Free Write Friday: Campsite

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I like waking up in the tent, shadows from evergreen trees looming, voices from the adjacent campsite echoing as if through a tunnel, muffled and yet amplified. I took a nap, youngest child restless the night before, waking up in her crib every couple of hours whimpering, unable to articulate what was the matter. I sang to her from just above, hanging over the opening of the the Eurovan pop top, coaxing her back to sleep. “Shhhhhh,” I pleaded, “it’s sleepy time.” She’d suck her tiny thumb dutifully, nestle her chilled toes back under the blanket and fall into a temporary slumber.

We spent the morning on the trail, a 1.2 mile hike to the falls; unambitious I thought, but the way there all uphill elicited whining and necessitated cajoling and stops for snacks of peanut butter sandwiches since I couldn’t find the jelly. We carried the toddler in the hiking backpack, secured by straps, covered by sunshade. The other two discovered perfect walking sticks, treasured for a bit, then tossed aside in search of more appealing finds.

In the evening we ride our bikes around the campground, sampling different loops with unexplored hills and towering trees. Then we settle at the amphitheater for the kids’ ranger program. Khaki-clad speakers with wide brimmed hats talk about native wildlife, the history of the park, admonish about safety and recycling. We dissect owl pellets, we search for huckleberries and signs of animals scampering in the nearby bushes.

After s’mores we sit by the fire crackling. Does it cackle? The flames burst up from the pit, leaping to their destiny, unable to reach their desired height. Instead they are confined, sequestered. I look up to see the black outline of the trees, pine needles fuzzy against the dusky sky, bluing to black. The shadows are spooky and comforting. A paradox of sensibilities.

A gaggle of preteen girls stroll by our campsite, gossiping loudly. My husband remarks, ”That will be M soon.” A troupe, a pod. That’s how she’ll survive, how she’ll thrive or shrink, the passageway to adulthood. For now, this stage, she sleeps silently in the tent as we watch the embers flicker and pop, sip drinks, read books by the rising firelight.

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Narrative Medicine

Narrative Medicine Monday: Relapse

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Poet and nurse practitioner Carolyn Welch captures a summer moment in Intima‘s “Relapse.” Welch’s daughter suffers from mental illness. She begins with an acknowledgment that is familiar to anyone who loves a person with a chronic condition that remits and relapses: “Of course we knew it could happen.”

Welch’s poem is a recognition that life moves forward despite the shadow of such a recurrence threatening to disrupt: “…summer plodded on with heat and harvest– / a steady supply of peppers and tomatoes;” The garden and growth are reliable, predictable, even as Welsh speaks to her daughter who has returned to an undesirable state of illness. Welch, with heartbreak evident, realizes “the meds are off.”

Writing Prompt: Consider a chronic illness that can relapse, often unpredictably: depression, multiple sclerosis, addiction, cancer. How does it feel to be the family member, the physician, the patient for each of these conditions? Write a triptych that includes each of these perspectives. Alternatively, near the end of her poem Welch acknowledges a “nagging failure of want.” Have you felt a similar sentiment as a family member is suffering? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: The Poetry in Primary Care

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Returning from vacation as a primary care physician, as any physician, can be a daunting task. I wrote a flash essay for Pulse about the intense timeline of a typical family physician’s workday. You can imagine after being gone for a week the mountain of forms, test results, and emails that accumulate. Even when you have, as I do (many don’t), supportive partners who do their best to clean out as much of the inbox as possible, there’s a particular dread and pressure that occurs for the primary care physician returning to work. In medicine, everything is connected to a patient. A response delayed, an aberrancy missed, means damage—emotional or physical—to a very real person.

It was on such a day, back to work after a week of camping and s’mores and searching for sand dollars on a Washington coast beach with my family, that I stumbled upon a poem. Our clinic is set up with exam rooms jutting in from corridors that originate like tributaries from the hallways that line the perimeter of the building. Our offices dot the exterior hallway, windows overlooking the parking lot or other buildings in the business complex.

I was walking along this exterior hallway, brisk step between patients, stuffing my stethoscope back into my stiff white coat pocket, when I was struck by a nondescript sheet of paper tacked to the bulletin board just outside our nurses’ office. “Good Bones” caught my eye, made me pause mid-stride. There were patients to examine, lab results to respond to, phone calls to make, radiographs to interpret, but I stopped and turned and read the familiar lines.

I’ve followed poet Maggie Smith’s work for some time. I find poetry alluring and intimidating. I took Michelle Penaloza’s excellent poetry class at Hugo House last fall to overcome my perplexion, but found it would take much more investment to grasp all I wanted about the craft of poetry. Smith’s work is relatable; my contemporary, a mother, an artist, her words resonate and I instantly became a fan.

But to see her here, amidst my other vocation, my medical science workday of Pap smears and skin biopsies and asthma exacerbations, was foreign, a collision of worlds. Though I’ve written about and taught narrative medicine for several years now, though I’m aware of the benefits, to both the physician and patient, of integrating the humanities into the science of medicine, I’ve still found it challenging to be present with such art during the compressive restrictions of my primary care workday. So, Smith’s poem, tacked inconspicuously along a back hallway bulletin board, among graphs of clinic access and Medicare Five Star goals and HEDIS measures and Press Ganey patient satisfaction scores, was a welcome interruption, a surprising reminder, an appropriate intermission interjected into a hectic workday.

I asked around for several days after, attempting to determine who had posted the poem of maintaining hope amidst a broken world. Though I was told it had been up for weeks, maybe months, I never did find the culprit. That same week Glennon Doyle highlighted this very poem on her social media. For me a collision of two women I admire, I’ve never met, whose good works are far from medicine, far from my little corner of primary care amidst the jutting mountains, the emerald waters of the Pacific Northwest. But the lessons, the convictions, the challenge of poetry is relevant, maybe the most relevant to my interactions with patients, my titration of insulin regimens, my diagnoses of cancer, my prescribing of antidepressants, my listening to histories to evaluate an unintentional weight loss or a shortness of breath or an abdominal distention leaving a patient in excruciating pain.

Maybe an antidote to our broken healthcare system, the crux of narrative medicine, a balm for medical professionals suffering from compassion fatigue and secondary trauma and a system that increasingly squeezes the humanity out of of its providers, rests in the complex workings, the simple act of reading poetry. There’s instruction in the words, in the art of the line break, illumination of humanity in the universal themes presented. A reminder that at the heart of medicine we serve people, we are people, we are all in this together. Poetry infuses humanity back into this most human, most intimate of professions. Medicine is a science but it is also an art. For all of our sakes, maybe it’s time to embrace that pairing in an inspired, more hopeful way.

Writing Prompt: How do you talk with children about the difficult aspects of this world? Despite the brokenness observed and felt, do you try to sell your children on the world in the hopes that they would attempt to make it beautiful? Do you see poetry in medicine? Why or why not? Write for 10 minutes.

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Free Write Friday: Rocks

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One day, before the cancer resurfaced, before the papery pale skin that transformed her into a childhood memory, she told the young girl that stones with a complete circle were special. She taught her how to search for them along the rocky shore, barnacles and seaweed camouflage carpeting like a mold.

They’d stroll along the Sound, down a woodsy steeped path, down from the musty cabin, faces groundward, searching for the wishing stones. Sometimes a clear white ring signaled upward, demarcated from the the concrete grey base of an oblong rock.

Decades later she teaches her own daughter: look for the one with the ring, the sign of infinity round and round. Hold it in your hand, warm it, keep it. Or return it to the ocean; give it a new life among the rolling waters.

They like to collect the different stones, squat and oblong, granular and smooth. Such varied colors from the surface of the earth. They turn them over in their hands, so different. One small and delicate with a child’s tensile skin; the other spotted, weathered from decades of existence. They each make a wish, the girl tossing into the sea, the woman holding on, relegating her hopes to her pocket.

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Narrative Medicine

Narrative Medicine Monday: The Bright Hour

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I first came across Nina Riggs’ book, The Bright Hour, because of its comparison to another popular memoir, physician author Paul Kalanithi’s When Breath Becomes Air.

Riggs was a poet, and her writing style reflects this; short chapters with descriptive elements and a musicality to the sentences that leaves us wanting more. She is honest and funny. Diagnosed with breast cancer in her thirties, a life just hitting its stride with two young boys in tow.

In describing Atul Gawande’s book Being Mortal, Riggs illuminates the heart of her own memoir “of living and dying.” She notes the attempt “to distill what matters most to each of us in life in order to navigate our way toward the edge of it in a meaningful and satisfying way.”

Riggs navigates the world of oncology and the process of dying with candor and a clear sense of self. When her oncologist discusses her case with colleagues she bristles at the standard name for the meeting of minds: “Tumor board: the term kills me every time I hear it. You’re just saying that to freak me out, I think. What is actually a group of doctors from different specialties discussing the specifics of your case together around a table sounds like a cancer court-martial or a torture tactic.”

She takes her young sons to her radiation oncology appointment in the hopes of getting them interested in the science behind the treatment. In the waiting room, she becomes acutely aware of how, taken as a group, her fellow cancer “militia” appear: “Suddenly I am aware of so many wheelchairs. So many unsteady steppers. So many pale faces and thin wisps of hair and ghostly bodies slumped in chairs. Angry, papery skin. Half-healed wounds. Growths and disfigurements straight out of the Brothers Grimm. So many heads held up by hands.” Have you ever been entrenched in a world of medicine or illness and then suddenly seen it from an outsider’s perspective?

Riggs ushers the reader into her new world as breast cancer patient. In a particularly striking scene following her mastectomy, she goes to pick out a breast form from the local expert, Alethia. “‘Welcome!’ She says. ‘Let’s find you a breast!’ She tells me that according to my insurance, I get to pick out six bras and a breast form…. The one she picks comes in a fancy square box with gold embossed writing: Nearly Me.” As Riggs’ contemporary, I could see the grave levity in the situation; Riggs is a master at sharing her experience, heartache and humor alike.

In the end, this is a memoir of a young woman who is dying. She acknowledges this and realizes that, near the end, there is a metamorphosis of light: “The term ‘bright spot’ takes on a whole new meaning, more like the opposite of silver lining: danger, bone pain, progression. More radiation. More pain medicine. More tests. Strange topsy-turvy cancer stuff: With scans, you long for a darkened screen…. Not one lit room to be found… not one single birthday candle awaiting its wish. No sign of life, no sign of anything about to begin.”

Writing Prompt: If you’ve read Kalanithi’s When Breath Becomes Air or Atul Gawande’s Being Mortal, how does their approach to writing about dying compare with The Bright Hour? Riggs comments on a kinship with the “Feeling Pretty Poorlies” she meets during her radiation treatment but because of HIPPA privacy regulations, never knows if they finished treatment or if it was “something else” that caused them to disappear. Did you ever participate in a treatment where you saw the same people regularly? Did you wonder about them after that time ended? Think about the privacy rules set in place to protect patients’ privacy. What are the benefits? Do you see any drawbacks? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: Lessons in Medicine, Mortality, and Reflexive Verbs

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I “met” Dr. Robin Schoenthaler through an online group of physician writers. Schoenthaler has been universally encouraging to our growing community of novice and accomplished writers and offers practical and helpful advice. Her kind of wisdom and support is so needed in both the literary and medical worlds.

This article by Schoenthaler, published in the New England Journal of Medicine, describes her use of Spanish during her medical training in Southern California. Schoenthaler learned much of the language from her patients, notably a “young woman named Julia Gonzalez” who, admitted with acute myeloid leukemia, taught the young Schoenthaler “considerably more than Spanish nouns and verbs.” After several rounds of chemotherapy, Julia improves and is discharged. This, along with Schoenthaler’s progress in Spanish, bolsters the young doctor.

Schoenthaler recalls that in medical school she fell in love with, “of all things, reflexive verbs. I loved the concept of a verb that made the self the objects.” Schoenthaler found that reflexive verbs gave her what seemed to be a “kinder, gentler way of speaking to patients in those early, awkward days of training. It felt so much more graceful to say to a stranger, ‘You can redress yourself’ rather than ‘Put your clothes back on.'” I too remember the awkwardness, in words and in deeds, of being a new physician. So much is foreign; the medical jargon and culture, the intimacy of illness and body each patient entrusts us with.

Schoenthaler finds that trying to discuss a topic as challenging as cancer tests her Spanish language skills. Near the end of medical school she attends a language immersion school in Mexico and her Spanish improves dramatically. When she returns, her patient Julia is readmitted with a grave prognosis. Distraught, she calls her mentor and he advises: “‘Now, you concentrate solely on her comfort.'” The new doctor translates his words into Spanish, “with its reflexive verb: ‘Ahora nos concentramos en su comodidad’ (Now we concentrate ourselves on her comfort). We, ourselves, all of us.”

Schoenthaler makes it their mission, instead of a cure, to provide comfort for Julia in her last days: “I held her hand and rubbed her wrists and used my reflexive verbs. We were both speaking a foreign language.” After Julia dies, Schoenthaler calls Julia’s mother, using the Spanish words she’s learned to convey the worst of all news: “‘Se murio’ — ‘She herself has died.'” The mother’s response needs no translation.

Writing Prompt: When you were first starting to care for patients, what words or phrases seemed most awkward? As a patient, have you had medical providers use phrasing that seemed detached or confusing? If you speak multiple languages, think about the different ways sentences are formed. What gets lost or jumbled in translation? Alternatively, think about a time you had to tell a patient’s loved one they died. What words did you use? Write for 10 minutes.

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