Narrative Medicine

Narrative Medicine Monday: The Oncologist

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Poet Carole Stone writes about “The Oncologist” in the Bellevue Literary Review. Stone starts with the questionnaire she receives: “Do you have an appetite? No. / Are you anxious? Yes.” I think of all the questionnaires we hand out to patients to save time, to make sure we get vital history, to screen for other issues that might not be readily apparent just by looking at the reason the patient came in. As a primary care physician, I can’t tell you how many times I’ve seen a patient for knee pain or seasonal allergies or a Pap smear, who actually wants to discuss their depression or panic attacks or fear of developing the same chronic illness as their cousin.

In Stone’s brief poem, though, she reveals the multitude that is assumed, that is missed, by these questionnaires and by the rote interventions that follow. Stone shares her inner dialogue when the woman suggests counseling and a writing group: “I imagine an unsharpened pencil, / and a blank page, / tell her, no.”

In the end, the patient and the oncologist miss a connection. Stone asks herself “Is this denial?” But verbalizes only that she has “nothing to say.” In modern medicine’s pressured office visits, sometimes the most important communication, how the patient is really feeling, what they are thinking, the opportunity to get to know a person beyond their disease, gets lost in all that goes unsaid between patient and doctor.

Writing Prompt: Stone declines the woman’s offer to try counseling or a writing group, commenting on her “stranger’s eyes.” Have you encountered a similar situation with a medical professional where they felt like a stranger? What is the balance of intimacy and intrusion when caring for someone who is gravely ill, has cancer or a debilitating chronic disease? Consider writing about a medical questionnaire you received and what it did and did not reveal. Alternatively, try writing about this exchange from both the patient and the oncologist’s point of view. 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: Grace and Forgiveness

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Oncologist Dr. Catriona McNeil writes about a severe adverse outcome her patient suffers in The Journal of Clinical Oncology’s “Grace and Forgiveness.”

Dr. McNeil treats her patient, Liz, who also happens to work in the same hospital, with a standard chemotherapy for breast cancer. When Liz suffers a rare but known possible complication from her chemotherapy, McNeil finds herself grappling with feelings of guilt, of responsibility. She initially wonders if she made a mistake, if there could be some other cause to her patient’s catastrophic decline: “The chemotherapy order had been checked and rechecked. Had I made a mistake? … She’d had nowhere near a cardio-toxic dose of chemotherapy. No, it couldn’t be that. Until eventually it could no longer be anything else.”

McNeil considers the early clinical studies of the chemotherapy she used, how those oncologists also might have “sat with a distraught family in a tiny room and had the same awful conversation. And yet how bland and unthreatening those little rows of text in the medical journals had seemed. How they’d sat so neatly in a small font near the bottom of the toxicity tables—cardiac death, 0.1% or thereabouts; just a handful of patients. Rare. Unlikely.”

This essay illustrates the limitations of medicine and the bias of human nature. It’s difficult to acknowledge we or our patients could suffer a detrimental complication, especially when it’s statistically rare. McNeil conveys the weight prescribing providers carry when such an event occurs. Although we all know, as patients and physicians, that there are no guarantees in medicine, it is jolting to experience what McNeil calls “the trauma of an adverse patient outcome.” Even though there “had been no malice or intent, no mistake or neglect,” McNeil still harbors guilt as she alone “had signed the chemotherapy order.”

Any treatment advised, from ibuprofen to chemotherapy, can have dire side effects. Learning to grapple with those consequences and continue to move forward with empathy for both self and the patient poses a great challenge to the medical profession.

Writing Prompt: As a patient, think of a time you’ve suffered an adverse outcome from a treatment prescribed by your physician. Even if you were well informed about the risks, benefits and alternatives, how did the experience affect you? Did it alter your opinion of your doctor or of medicine in general? If you’re a medical provider, write about a time you prescribed the best treatment available but your patient had a detrimental outcome. How did that affect you and your practice? Write for 10 minutes.

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