Narrative Medicine

Narrative Medicine Monday: Ikiru

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Today’s Narrative Medicine post highlights a first: a movie. As part of preparation for this week’s Columbia Narrative Medicine Workshop, I watched a 1952 Japanese film, Ikiru. This movie, directed by Akira Kurosawa, outlines the life and death of a man with end stage cancer.

I happen to also be facilitating a Literature & Medicine gathering this week, where the topic is “Confronting Mortality.” In it, we are reading Tolstoy’s novella “The Death of Ivan Ilyich,” which similarly shows a man facing a terminal illness and wrestling with the meaning of his life and the nature of his painful death.

In Ikiru the protagonist, Mr. Watanabe, has not missed a day of work in 30 years at the same tedious government job. The narrator notes that “he’s only killing time, he’s never actually lived.”

I’m certainly not a movie critic, but several things stood out to me, looking at this film through a narrative medicine lens. First, his physicians insist on withholding the terminal nature of Mr. Watanabe’s illness, stating it’s a “mild ulcer” only, even when Watanabe begs them for the truth. This scene reminded me of a panel on cultural issues in bioethics I attended many years ago. On the panel was a bioethicist from Japan, and he explained the cultural influence of withholding the true prognosis or even diagnosis of an illness from a loved one; that a physician might deliver a terminal diagnosis to a patient’s family member rather than to the patient themself.

We get flashbacks in the movie to understand the central character more. His wife died when his son was young and he never remarried. Although they live together still, Watanabe and his son have a difficult relationship; they struggle to really communicate and Watanabe in fact is never able, despite several efforts, to actually confide his diagnosis and angst to his son.

Mr. Watanabe comes across a stranger who he asks to show him “how to live” and they gamble and dance and drink, but ultimately he finds little lasting pleasure in these endeavors.

The central character then turns to an old colleague, a young woman, trying to decipher her vitality, her zest for living. Through this interaction, he resolves to get a park built for the community. In the end he succeeds, battling the bureaucracy he was a part of himself for decades. It seems the completion of the park gives the dying man some semblance of peace, a legacy solidified, which produces the meaning he was struggling to find.

Writing Prompt: At one point in the film, Watanabe tells a colleague “I can’t afford to hate people. I haven’t got that kind of time.” What are the different ways you’ve seen patients who are terminally ill react to facing their limited time? Did they give up hate? Or something else? In Mark Doty’s poem “Brilliance” the patient initially gives up investing in anything he can’t finish. Why do you think Watanabe decided that the playground would be his last project, his last investment in what little energy and time remained? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: A Tense Moment in the Emergency Room

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Author and physician Danielle Ofri’s latest piece in The Lancet outlines “A Tense Moment in the Emergency Room.” Ofri describes the concern of an African-American medical student as a “young man stormed into the doctors’ station… and held up his toddler. ‘My baby’s choking and you guys aren’t doing anything.'” The medical student knows she is least senior of the gathered medical professionals, but she also is the “only African-American person among the white doctors” and is “acutely aware of the fraught dynamics,” given the child’s father is also African-American. She considers stepping forward to assist, even though per her estimation the child is not in imminent danger. Instead, she holds back. Ultimately, the “highest person in the medical hierarchy” asks the man to return to his room and the situation escalates.

Ofri notes what anyone who has visited or worked in a hospital is keenly aware of: the hospital is a stressful place. Given the already heightened tension, if you “[a]dd in issues of race, class, gender, power dynamics, economics, and long wait times … you have the ingredients for combustion just hankering for tinder.” The broader issue is that “racial and ethnic disparities in medical care are extensive” and “implicit or unconscious bias is still entrenched in the medical world.” How have you witnessed this issue in giving or receiving medical care yourself? Do you know if the organization you work at, or receive medical care from, is working to address implicit bias in medicine?

The medical student’s reaction to the father differed from her white colleagues: “When the father stormed into the doctors’ station, she saw fear and concern; her fellow physicians saw aggression.” These issues are complicated by the various power dynamics that exist in medicine. On one hand, the medical student wonders if she would be treated similar to the father if she were a patient there, given they are both African-American and therefore “look the same to the outside world.” However, in that situation she was both “part of the powerful group—the doctors—but as a medical student, she was singularly powerless… a medical student might just as well be part of the furniture.”

Ofri contends that in the medical field we often justify our behavior in tense encounters “because we surely know that we are not racist, or sexist, or homophobic. We are good people and we have chosen to work in a profession dedicated to helping others, right? How could our actions possibly reflect bias?” Ofri calls us to seek out stories, to listen to one another. Medicine, after all, “remains an intensely human field: illness is experienced in human terms and medical care is given in human terms. We humans bring along our biases and stereotypes—that is true—but we also bring along our ability to communicate and to listen.” I know this is a skill I need to continually cultivate in my own practice. How might you listen better today?

Writing Prompt: Have you experienced a similar situation as this medical student regarding power dynamics, wether related to race, class, gender, or level of training? Think about such an event, either during your medical training or when encountering a medical professional as a patient. How did the people around you react differently? How did you react? Did your perspective of the incident change over time? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: Trying to Help

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Poet and physician Dianne Silvestri outlines practicalities near the end of life in her Hospital Drive poem, “Trying to Help.” She begins with an entreaty: “Don’t forget when I die” and from there imparts instruction. She implores the reader “Remember the penciled page … that lists all important numbers.” She both instructs, but also attempts to absolve of any guilt: “It’s okay if no one peruses / my binders, journals, and files.” In the end, there is the sincerity of a small request, that “if you resume dance lessons, / please miss me … a little.”

Silvestri’s blend of instruction and request is both practical and wrenching. The narrator is preparing their loved one for that which cannot be prepared for. Her words are both freeing and binding. They offer solace in a hopeless situation.

Writing Prompt: Have you had a loved one or a patient who reacted to dying similarly to the narrator of this poem: putting things in order, advising their loved one about practicalities? How was this received? Who do you think the narrator is trying to help? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: How Virginia Woolf Taught Me to Mourn

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Katharine Smyth explains “How Virginia Woolf Taught Me to Mourn” in her recent essay on Literary Hub. Smyth outlines how Woolf described the mourning period surrounding her mother’s death, and how that “spring of 1895 in London… may as well have been the winter of 2007 in Boston” when she was grieving her own father.

Smyth and her mother illustrate how people can react to grief differently. Her mother “saw the ringing doorbell as an interruption,” while Smyth “liked hearing from the outside world: grief is rapacious, and cards and flowers functioned as its fuel. As long as they continued to proliferate, the experience of loss was active, almost diverting. It was only when their numbers dwindled, then ceased altogether, that a kind of dullish hunger set in.” I think the same can be said of those who experience trauma. Often, others surround you during and immediately after the event, but as time progresses and active support dwindles, a loneliness takes its place.

One of Smyth’s friends “invited me to her parents’ apartment for a kind of mini sitting shiva. For several hours she and her mother listened as I talked about my father’s life; I loved that neither was cowed by death’s awkwardness.” This gift to Smyth seemed an unexpected balm. Do you think most of us succumb to death’s awkwardness? Why do you think this is a cultural norm?

Smyth notes that when the distractions end, “Above all, I disliked the passing of time, disliked the thought that every minute carried me further from my father.” She can relate to Woolf’s surreal experience in the wake of a parent’s death: “The tragedy of her mother’s death, she said, ‘was not that it made one, now and then and very intensely, unhappy. It was that it made her unreal; and us solemn, and self-conscious. We were made to act parts that we did not feel; to fumble for words that we did not know. . . . It made one hypocritical and immeshed in the conventions of sorrow.'”

Smyth identifies with Lily in Woolf’s To the Lighthouse: “her frustrations are those of the grown writer who must confront grief’s fogginess, its unreliability. ‘Why repeat this over and over again?’ she thinks angrily of her attempts to register the fact of Mrs. Ramsay’s passing.” Smyth, too, finds herself repeating, “My father is dead, I continued to say, my father is dead.”

In To the Lighthouse, Smyth discovers that Woolf conveys “her understanding that we all need some structure by which to contain and grapple with our dead.”

Writing Prompt: Although not religious, Smyth finds the act of sitting shiva cathartic, finds herself “longing for ritual, for structure, for some organizing principle by which to counter the awful shapelessness of loss.” Think of your own experience of grief or loss. Can you relate to the healing benefits of structure? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: Brain Biopsy

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Pathologist and poet Dr. Srinivas Mandavilli illuminates the microscopic, and the universal, in JAMA‘s “Brain Biopsy.”

Mandavilli lets us know that in “neuroradiology they have a gift for reading the mind.” In moving a glass slide, he learns to “bow in silence and see an underworld / —an otherworld where planets improvise like nuclei.” The narrator alternates between the microscopic and the broader cosmos. Through this, Mandavilli evokes a sense that we are all part of a grander whole, even the minuscule and aberrant parts of us.

His poem ends with the relational, with a hint at the journey we travel: “While we drive on a summer evening, she rests, / her long fingers intertwine, the heft / of her dark tresses strewn carelessly like the road ahead.”

Writing Prompt: Think of the smallest and largest components of life, of existence. How are they connected? Alternatively, pull out your old histology textbook or your child’s microscope. Examine a slide and write what you see, how this observation makes you feel. Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: Hammond B3 Organ Cistern

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Poet Gabrielle Calvocoressi conveys what it feels like to experience a reprieve from wanting to kill herself in The New Yorker‘s “Hammond B3 Organ Cistern.” She begins with the wonder: “The days I don’t want to kill myself / are extraordinary. Deep bass.” Calvocoressi is nearly at a loss for words: “There should be a word for it. / The days you wake up and do not want / to slit your throat.” Clearly, though, she finds them, unflinching in her descriptions of suicidal thoughts. She wants the world to celebrate with her on the days she does not experience this urge: “Come on, Everybody. / Say it with me nice and slow / no pills no cliff no brains onthe floor“

What Calvocoressi portrays is the visceral reality that erupts for a person who knows the severity of of suicidal urges and wakes to find “I did not / want to die that day.” Calvocoressi wonders, “Why don’t we talk about it? How good it feels.” In this extraordinary poem, Calvocoressi does.

Writing Prompt: Have you suffered from a serious illness that may feel different from one day to the next, such as severe depression? What does it feel like on the “good” days, the days your illness is improved or in remission? Can you relate to Calvocoressi’s exuberance for this state, the “deep bass,” the “leaping?” Write for 10 minutes.

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Narrative Medicine Monday: The Insulin Wars

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Dr. Danielle Ofri’s opinion piece in the New York Times last week outlines “The Insulin Wars.” As a primary care physician who cares for hundreds of patients with chronic diseases, including diabetes, I could relate to Ofri’s frustration and outrage on behalf of patients and providers.

Ofri describes how her patient’s insurance company keeps changing the insulin that is preferred and therefore covered. This can be challenging for both the patient and the prescriber to keep up with, and there can be serious health consequences if there is a gap in use of this critical medication.

Ofri notes that “[b]etween 2002 and 2013, prices tripled for some insulins.” She offers several reasons that this is the case, but highlights that insurers use “pharmacy benefit managers, called P.B.M.s, to negotiate prices with manufacturers. Insurance programs represent huge markets, so manufacturers compete to offer good deals. How to offer a good deal? Jack up the list price, and then offer the P.B.M.s a ‘discount.'”

The end result for patients who can’t cover the costs of this vital medication may mean self-rationing, fluctuating blood sugar levels, and rejected prescriptions. For physicians, “it’s an endless game of catch-up.” It’s also a “colossal time-waster, as patients, pharmacists and doctors log hours upon hours calling, faxing, texting and emailing to keep up with whichever insulin is trending. It’s also dangerous, as patients can end up without a critical medication for days, sometimes weeks, waiting for these bureaucratic kinks to get ironed out.” There can be dire consequences for a diabetic patient to have short or long term uncontrolled diabetes.

In trying to get her patient’s insulin switched to an acceptable alternative, Ofri discovers that the insurance company “now had no insulins on its top tier. Breaking the news to my patient was devastating.” Ofri realized that the insurance company had found a way to place the burden on physicians and patients: “Let the doctors be the ones to navigate the bureaucratic hoops and then deliver the disappointing news to our patients. Let patients be the ones to figure out how to ration their medications or do without.” This piece highlights a sobering fact too common in modern medicine: the system often gets in the way of the best interest of the patient. We can, we must, find a better way.

Writing Prompt: Have you encountered a similar issue with insulin, either as a patient or as a physician? Have you seen other vital medications involved? What frustrates you most about the situation? How does this issue affect the patient-physician relationship? Write for 10 minutes.

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Narrative Medicine Monday: Narrative Gatherings

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The first Medical Humanities Twitter Chat, or #medhumchat, happened January 2nd and was curated by Dr. Colleen Farrell, an internal medicine resident. Although I wasn’t able to fully participate (bath time for my three kids, as often is the case, was not a well-controlled event that offered much down time for a Twitter chat), I was able to go back and read the lively conversation.

Farrell notes in this follow up post the role the humanities play in helping “make sense of the seemingly senseless suffering and heartbreak I witness daily as a doctor.” This seems a common sentiment among medical providers today, as varied opportunities in narrative medicine expand.

Farrell’s blog post lists the Medical Humanities Chat readings and questions, along with a few responses from participants. It’s an interesting format to interact with medical professionals and patients from all over the world.

The next Medical Humanities Chat will be this Wednesday, January 16th at 9pm EST, on the topic of Racism & Medicine. I’m hoping, bath time willing, to be able to participate in this important discussion.

Locally, I recently attended the Northwest Narrative Medicine Collaborative‘s inaugural Seattle event, a medical moth with the theme of “My First Time.” The event sold out in just a few weeks and the stories told were varied, often humorous, and resonant with the crowd of both medical providers and the general public.

The next Seattle NW Narrative Medicine Collaborative event is yet to be announced, but I know is already in the works.

The popularity of these opportunities to share our stories, consider a narrative, process the intimate and at times wrenching role we as medical providers play in health and illness, highlights the thirst for such contemplation and conversation among increasingly burnt out physicians and frustrated patients. I find myself, ten years into my own career in primary care, seeking out such community, eager to help cultivate ways to gather and share.

I hope, wherever you are, you can find or foster similar opportunities to share your story, consider your patients’ narratives, and use the humanities as a tool for further introspection and connection.

Writing Prompt: Consider reading the pieces Dr. Farrell selected for the first #medhumchat and answer the questions posed in written form. Were your answers similar to the ones posted during the live chat? Did you gain a different perspective after reading through the conversation? Did any of your answers or reactions to the readings surprise you? Write for 10 minutes.

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Narrative Medicine Monday: Leaving the Body

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Author Lisa Knopp shows how we can be drawn to the presence of a body even following death in Hospital Drive‘s “Leaving the Body.” After her mother dies, Knopp lingers in her hospice room, asking to stay as a woman enters to wash her mother’s body and ready her “for the people who are coming to pick her up soon.”

Knopp initially wonders about “the point of bathing my mother, since her body will soon be ash.” The nurse’s aide speaks to Knopp’s mother as she wipes her face and arms. Knopp finds this “comforting, this informing my mother of what’s about to be done to her, since I can feel that something of her is still here.”

When the aides remove the woman’s gown, Knopp is filled with wonder at her mother’s naked body. “Even though she would feel shamed by my scrutiny, I want to savor and memorize the details.” This body holds memories for Knopp, the substance of a mother-child relationship, connection: “I know their shape so well: large knee bones, slightly bowing calves, like those of her mother, and thick ankles. Just below her right knee on her inner calf is a blue vein, an inch or two long that has been there as long as I can remember.”

In these moments right after her mother’s death, Knopp finds herself “starving for her physicality” and tells the aide she’d like to touch her mother. She kisses her forehead and strokes the top of her head and wonders, “What is it that I’ll be missing now that my mother’s heart has stopped beating, and she’ll soon be turned to ash?” Her mother has died, but Knopp is still drawn to her physical body, the familiarity of her mother’s form that will cease to exist. Knopp shares that her greatest regret will be that “we didn’t spend more time in each other’s physical presence” and that this final sponge bath is her “last chance to see and touch and smell my mother, flesh of my flesh, my first home.”

Knopp recalls all of the beautifully mundane things she and her mother chatted about on the phone, though they rarely discussed her cancer or the grander questions Knopp yearned to ask her dying mother. The loss Knopp highlights in her essay isn’t so much about the flesh itself, but more about her experience of her mother that was contained in that body: her “voice, words, thoughts, laughter, and silences.”

Knopp reflects on the waning importance of physicality in our modern world, how the dean of her college encourages faculty to have more screen time and less face time with students, how so many interactions with friends are via social media and not in person.

At the end of the essay, Knopp combs out her mother’s hair, braids it with care and cuts a lock of hair as a token. Knopp is unsure what she will do with the lock of hair, but the gesture seems satisfying in the moment, keeping “more than just memories of her body” before they wheel her away.

Writing Prompt: If you’ve been present with a dead body, either a loved one or a patient, what did you experience while in that space? Was it difficult? Healing? Both? Did you feel drawn to touch the body, as Knopp did? What are your thoughts about Knopp’s observation that we spend significantly less time face-to-face? How do you think spending less time in the physical presence of others might affect us? Write for 10 minutes.

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Narrative Medicine Monday: Intern

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I’ve written about physician and author Dr. Sayantani DasGupta’s concept of narrative humility before. The first piece I read of DasGupta’s was in Lee Gutkind’s 2010 collection, Becoming a Doctor. Her essay, “Intern,” is a compelling snapshot of a brand new physician.

DasGupta writes the piece in third person and reveals the things that she “hoarded.” The essay is reminiscent of Tim O’Brien’s classic “The Things They Carried.” I relate to DasGupta immediately, the hoarding of “Xeroxed protocols and carefully transcribed antibiotic regimen[s].” DasGupta brilliantly captures the unsure medical intern, who “hoards” in order to feel prepared for anything in a very unpredictable new profession where lives are at stake.

In describing the things hoarded, DasGupta outlines the life of the intern. She notes the importance of keeping “bottles of chemical developer” to look for occult blood in stool. They were always “impossible to find when you needed them” and “there was nothing worse than standing in a patient’s room with a gloved finger full of excrement and nowhere to put it.”

As the essay progresses, DasGupta’s hoarding becomes more figurative. She “hoarded her patients—especially the usually healthy infants,” who, she admits, during a hard night’s call provide an escape “just to hold and rock a baby.”

DasGupta describes hoarding her senses, “taste, primarily, because she found herself so empty” and the hand cream she rubbed on as a ritual, because “[s]he missed the feeling of her own skin.” She hints at how a career in medicine becomes all consuming, that “no matter how much she bathed, or how expensive her soap, her nose seemed filled with the smells of the hospital, the sick, and her own stale and sticky body.”

She is sincere about the toll arduous medical training takes on her sense of self, her physicality, her sexuality: “despite all the pain, she often found herself yearning—aching—to be touched.” DasGupta reveals the challenges to her own marriage during this intense time of training and that, as an intern, there is little space to think of anything else but the work: “In that stillness, she allowed herself to consider—would he wait until the end of internship to leave her? For the rest of the day and night, there would be no more time for such thoughts….”

Of course, DasGupta speaks of sleep and time, the difficulties of each as an intern working all hours of day and night, the pressures unceasing: “She hoarded sleep when she could get it, in the darkened backs of lecture halls, on the cheap, scratchy couches in the residents’ lounge….”

Ultimately, DasGupta’s essay reveals the inner dialogue of a new physician’s arduous first year, gives a glimpse of the challenges to those outside of medicine, and evokes memories for those of us who lived through it.

Writing Prompt: If you’re a physician, think back to your intern year or your first year of medical school. What did you hoard? Make a list. If you’re not in the medical profession, think of when you first started a new job — what did you gather around you to make you more confident, better prepared? Write for 10 minutes.

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