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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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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Narrative Medicine

Narrative Medicine Monday: Titanium Seed

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Poet Judith Skillman’s “Titanium Seed,” published recently in the Journal of the American Medical Association, describes the new “part of flesh inside” that is hers “to carry through / airports, not setting off / any alarms, they assure me, / not anything other than / a placeholder for cancer.”

She depicts the experience of getting a breast ultrasound, “the technician rubbing her wand / over and up hills of black / and white.” Skillman’s poem illustrates the anxiety associated with waiting for a diagnosis, the uncertainty of the pause that occurs after an aberrancy is found but before a definitive answer is revealed.

The seed represents an alteration of Skillman’s body, this reality of the possibility of cancer she harbors in her flesh unseen. She outlines how the patient is at the mercy of the medical diagnostician, describing how she lies “between two triangle pillows – / placed like an offering / to this Demi god who may / or may not find what appeared / on his screens.”

Writing Prompt: Think of a time you had a biopsy or lab test or imaging done and had to wait for the results. Sit in that space of uncertainty. Describe the experience. Did colors return, as they did for Skillman, when she receives a benign diagnosis? How did knowing contrast with the period of waiting? Try writing about this space of waiting from both the patient and medical provider’s viewpoint. Write for 10 minutes.

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Narrative Medicine Monday: Curiosity and What Equality Really Means

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Atul Gawande’s recent commencement speech at U.C.L.A. Medical School, published in The New Yorker, begins with a story. He describes an Emergency Room encounter with a prisoner who had slit his own wrist and swallowed a razor blade. Gawande found himself caring for this person who had alienated himself from many others, who experienced many preconceived expectations, given his status, as well.

Gawande warns the graduates that “wherever you go from here, and whatever you do, you will be tested. And the test will be about your ability to hold onto your principles. The foundational principle of medicine, going back centuries, is that all lives are of equal worth.”

He asserts that there is a gap in the care that people receive, whether that disconnect be due to “lack of money, lack of connections, background, darker skin pigment, or additional X chromosome.” Have you noticed this in your own medical practice, in your own life? How did this injustice make you feel?

Do you agree with Gawande that, as medical professionals, we have a “broad vantage” of this issue? Do you also agree that “[w]e all occupy our own bubbles?” How have you seen this manifested in individuals and society as a whole?

Gawande argues that we should regard all people as having “a common core of humanity.” In order to put ourselves in others’ shoes, we need to have a certain curiosity, as Gawande does about his prisoner patient. Despite the way the patient threatens his chief resident, Gawande engages with the patient. He learns that “[i]n medicine, you see people who are troublesome in every way: the complainer, the person with the unfriendly tone, the unwitting bigot, the guy who, as they say, makes ‘poor life choices.’ People can be untrustworthy, even scary… But you will also see lots of people whom you might have written off prove generous, caring, resourceful, brilliant. You don’t have to like or trust everyone to believe their lives are worth preserving.”

In my ten years in practice, I have certainly found this to be true. I agree that, above all, remaining curious about others is the key to understanding, the “beginning of empathy.” As medical professionals, we are “given trust to see human beings at their most vulnerable and serve them.” That trust is sacred, should never be forgotten and should inform our every attempt to serve “all as equals” and cultivate “openness to people’s humanity.”

Writing Prompt: We all train, and many of us work, in hospitals. Gawande notes that hospitals “are one of the very few places left where you encounter the whole span of society.” Think of two encounters you’ve had in a hospital with people of backgrounds from different ends of a spectrum. Write about your interactions with each of them. Alternatively, think about what gives you status, or lack thereof, in society. How have you been treated by medical professionals? Do you think your experience would be different if you were a C.E.O. or a cabbie? Why or why not? Write for 10 minutes.

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Narrative Medicine Monday: Narrative Humility

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“Telling and listening become an antidote to isolation, a call for community.” – Sayantani DasGupta

Dr. Sayantani DasGupta is a leader in Narrative Medicine and faculty at Columbia University. What is narrative medicine? DasGupta explains it this way:

“Narrative Medicine is the clinical and scholarly movement to honor the central role of story in healthcare. Long before doctors had anything of use in our black bags—before diagnostic CAT scans, treatments for blood loss, or cures for tuberculosis—what we had was the ability to show up and to listen; to stand witness to birth, death, illness, suffering, joy, and everything else that life has to offer.”

In this TEDx talk at Sarah Lawrence College and in an essay in Creative Nonfiction on the same topic, she expands on the concept by describing narrative humility:

“Narrative humility means understanding that stories are not merely receptacles of facts, but that every story holds some element of the unknowable.”

DasGupta asserts that “listening to another person is an act of profound humanity; it is an act of profound humility. This is particularly true at those charged moments of illness or trauma, change or suffering.” Have you found this to be true, either as a patient or as a medical provider?

In a healthcare system plagued with burnout, DasGupta argues that narrative humility, learning to listen well to patients, can “deepen medical practice, bringing satisfaction and joy back to an ancient profession that is so much more than a business.”

Writing Prompt: Do you agree with DasGupta that we need to “once again train clinicians to elicit, interpret, and act upon the stories of others, that we hold in equal stead multiple ways of knowing—the scientific and the storied, the informational and the relational?” Why or why not? How can we do this? If you’re a medical provider, were you taught how to listen in your training? Have you considered the concept of narrative humility? Do you think it’s possible to practice this way in today’s healthcare system? Write for 10 minutes.

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Narrative Medicine Monday: The Burnout Crisis in American Medicine

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A recent article in The Atlantic by writer and resident physician Rena Xu highlights the toll rigid regulations and decreasing autonomy takes on medical professionals.  In “The Burnout Crisis in American Medicine,” Xu illustrates the causes of burnout and the consequences of a system that makes it challenging for doctors to do what they were trained to do – care for patients.

In the article, Xu tells the story of a patient admitted to the hospital for cardiac issues. She is then found to have a kidney problem that is in need of a surgical procedure. Unfortunately, the anesthesiologist who tries to book the the surgery finds that the computer system won’t let him schedule it because the patient already had a cardiac study scheduled for the following morning. A computer system issue took hours of Xu’s time, all because “doctors weren’t allowed to change the schedule.”

Xu expresses understandable frustration that her “attention had been consumed by challenges of coordination rather than actual patient care.” I’m sure every medical professional can relate. In today’s healthcare environment, much of the work we do in medicine is clerical and administrative. Xu notes that “doctors become doctors because they want to take care of patients.” Instead, many of our “challenges relate to the operations of medicine–managing a growing number of patients, coordinating care across multiple providers, documenting it all.”

I liked Xu’s analogy of a chef attempting to serve several roles in a restaurant without compromising the quality of the meals. The restaurant owners then ask her to document everything she cooks. There are a bewildering array of options for each ingredient and “she ends up spending more time documenting her preparation than actually preparing the dish. And all the while, the owners are pressuring her to produce more and produce faster.” Any physician who has worked with the ICD-10 coding system can relate.

Xu notes the looming physician shortage in coming decades as the population ages and a large swath of physicians retire: a crisis in its own right. The only remedy is to improve “the workflow of medicine so that physicians are empowered to do their job well and derive satisfaction from it.”

Patients might not realize that “burned-out doctors are more likely to make medical errors, work less efficiently, and refer their patients to other providers, increasing the overall complexity (and with it, the cost) of care.” As patients, we should be fighting for our healthcare organizations to promote a culture and systems of wellness among medical providers. The care we receive depends on it.

Writing Prompt: If you’re a physician, what is greatest stressor in your daily practice? Have you had to make “creative” work-arounds, like the anesthesiologist in Xu’s article, just to do the right thing for your patient? If you’re a patient, have you considered how your physician’s well-being might affect their ability to care for you? What systemic barriers are in the way of addressing this crisis? Write for 10 minutes.

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Narrative Medicine Monday: Mom at Bedside, Appears Calm

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I recently attended Harvard’s Writing, Publishing and Social Media for Healthcare Professionals conference and wrote about how networking and finding “my tribe” was a meaningful part of the conference. Case in point: a friend I met there recalled my interest in narrative medicine when she went to a talk by Dr. Suzanne Koven, the Writer in Residence at Massachusetts General Hospital. Dr. Koven is an internist and writer and has spearheaded the innovative Literature & Medicine program at MGH. My friend initiated a virtual introduction and Dr. Koven kindly agreed to speak with me about her successful program at MGH.

I’m inspired by her work in bringing narrative medicine to front-line medical providers. Today I’m featuring a New England Journal of Medicine piece she wrote from a very personal experience titled “Mom at Bedside, Appears Calm.”

Koven opens the essay with the things she carries “everywhere we go… two plastic syringes, each preloaded with 5 mg of liquid Valium….” She describes how they treat her son at “the first sign of blinking or twitching,” and that “[w]hen he relaxes, so do we.”

Koven is a physician, with all of the benefits and pitfalls that entails, navigating the tumultuous waters of a loved one suffering an illness that is particularly unpredictable and unnerving, especially when it affects a child. Her son continues to seize, still without an identifiable cause, taking “40 pills a day, crushed, on spoons of Breyers cookies-and-cream ice cream. Still he blinks and shakes, shakes and drops.”

With subsequent admissions to the hospital, Koven finds that she grows “more at ease” with the other parents of ill children and that she “clings to the nurses, Jen and Sarah and Kristen and ‘the other Jen,’ as we call her.” She glances at her son’s chart one night and it reads: “Mom at bedside. Appears calm.”

Though her son is eventually diagnosed and treated effectively, grows into adulthood and no longer suffers seizures, this period of unpredictable anxiety still haunts her: “occasionally my terror will snap to life again…. A siren sounds…. I still stop to see which way the ambulance is heading.”

Writing Prompt: Nowadays much of the medical record, including a physician’s progress note, is available right away to the patient via an online portal. Have you read a phrase or comment in your medical record that gave you pause, caused reflection? Did the comment align with how you felt in that moment, how you were perceived by the physician or nurse? If you’re a doctor, how would you answer the question Koven received: “Is it easier or hard to have a sick child when [you’re a] doctor?” Write for 10 minutes.

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Narrative Medicine Monday: The Game of Catch

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Noah Stetzer’s poem “The Game of Catch” is featured in the current issue of the Bellevue Literary Review as well on Poetry Daily. Stetzer begins by describing an “idyllic” game of catch, then expands his narrative, including idioms and phrases the word catch might conjure up.

As the poem progresses it becomes more intimate, more ominous, a recounting of Stetzer’s own story of “catching” from another: “in my voice, catch my breath, no-it’s when small blue flame/ignites kindling; the kind of catch that’s alone in itself the thing/one avoids…” Stetzer guides the reader through his own experience of catching an illness that, though “unexpected,” also seemed “inevitable” and ultimately leaves us with the idea that this is a game we all play.

Writing Prompt: Take another word commonly used in medicine: treat, contract, mass, inject. Think of all the other ways this word is used, in idioms or otherwise. What is surprising or illustrative about the words we use in illness and health? Alternatively, think of a time you “caught” a disease from another person. Maybe it was a stranger or someone you knew intimately. Did you feel, as Stetzer did, that it was “unexpected” but also “inevitable?” Write for 10 minutes.

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Narrative Medicine Monday: Brain on Fire

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Susannah Cahalan’s gripping book Brain on Firerecounts her sudden descent into psychosis and her parents’ frantic search for the cause. (Fair warning that this post contains spoilers to this real-life medical mystery.) Cahalan, a successful young New York City journalist, notes small changes at first: mild numbness, forgetfulness, nagging insecurities.

After Cahalan suffers an overt seizure, she is further evaluated by a top neurologist. He is convinced, after her MRI, exam and blood work all come back normal, that her symptoms are due to alcohol withdrawal, despite no history of heavy alcohol or illicit drug use.

I was struck by the glaring assumptions made by her physician; the details of her narrative were lost on him and the opportunity for detecting her rare diagnosis was missed. Cahalan later in the book asserts the misdiagnosis was a “by-product of a defective system that forces neurologists to spend five minutes with X number of patients a day to maintain their bottom line. It’s a bad system. Dr. Bailey is not the exception to the rule. He is the rule.”

I couldn’t agree more with Cahalan. Our system as it currently stands requires physicians to see more patients in less time, respond to more emails, make more phone calls and review more lab results, often at the end of a nonstop 10 hour day. It’s no wonder details of a patient’s narrative are missed. There’s no space to think deeply about a case, delve into the specific details that may provide a vital clue.

As Cahalan’s mental fitness deteriorates and her paranoia heightens, her mother insists she be admitted to the hospital and her neurologist acquiesces, finding a bed with 24-hour EEG monitoring at New York University Langone Medical Center.

Cahalan doesn’t retain many memories of the month she was hospitalized but does piece them together for the reader, using video obtained while being monitored for seizure activity, hospital notes and the recollections of her family and friends. Through these she paints heartbreaking snapshots of a young vibrant woman’s loss of function and reality.

Cahalan eventually comes under the care of a physician who finds time to listen to her story, every detail from the beginning. His diligence connects her to the proper clinician and results in her correct diagnosis and treatment. Cahalan’s account made me think of Dr. Danielle Ofri’s book What Patients Say, What Doctors Hear. The details of her story were so imperative to discerning, even suspecting, the correct diagnosis. Hers is a cautionary tale that reiterates the need for system reform if we want our doctors to have the time to put their extensive training to use and get it right.

Writing Prompt: After Cahalan recovers, she notes that she has difficulty distinguishing “fact from fiction.” She muses on memories lost and formed and struggles with the fear that she could, at any time, relapse. The experience causes her to reframe the brain as vulnerable. Do you think of the brain as fragile? Why or why not? Do you agree with Cahalan that a primary defect in the medical system is one that forces providers to see so many patients to “maintain their bottom line”? Think of a time this affected you as a patient. If you’re a provider, think of a time a diagnosis was delayed or missed because of systemic pressures resulting in a missed piece of a patient’s narrative. Write for 10 minutes.

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