Narrative Medicine

Narrative Medicine Monday: May Cause

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Writer Elspeth Jensen highlights the many instructions we are confronted with when taking medications in her Bellevue Literary Review prose poem “May Cause.” Jensen’s poem accelerates throughout and hints at the absurdity of all we are told to do, not to do, of all we are advised to avoid, to look out for: “Use care when operating a vehicle, vessel, boat, until you become familiar with blurred vision, symptoms worsening, fear, or sadness.” Jensen repeats “do not” six times in this short poem. The reader, as the patient, feels the anxiety evoked by the many stipulations of being medicated.

Writing Prompt: Think of the last time you read the instructions given to you with your medication. Perhaps you still have one in your medicine cabinet. Take it out and read it in full. How many times are you told “do not?” Is anything confusing? Humorous? Did you adhere to the instructions? Why or why not? Write for ten minutes.

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Narrative Medicine Monday: On the Eve of My Mother’s Dying

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Writer Peggy Duffy’s flash nonfiction piece in the latest issue of Brevity, “On the Eve of My Mother’s Dying,” is a snapshot of her mother’s last days on hospice.

Duffy opens with the assertion that those who work in hospice “coordinate.” In my experience, both as a physician and as a family member, caring for those at the end of life, this verb rings true. The hospice people coordinate all the details of transport and durable medical equipment and adjustment of medications for comfort and, ultimately, Duffy realizes, “my mother is actively dying, and they strive to coordinate that too.”

Duffy’s father is upset they are not coaxing his wife into eating, despite her being unresponsive. The social worker explains to him “that unless my mother opens her eyes and asks for food, unless she can swallow, she cannot eat.” Duffy understandably struggles with her father’s resistance to accepting why they can’t give her mother water to drink: “Not long after I leave, he calls. Why won’t they give her water? She can’t swallow. What about on a teaspoon? You have to swallow even the tiniest amount of water. How can she survive without water? (Pause) She isn’t going to survive. I remind him she signed an advanced directive years ago when she was still lucid and knew what she was signing.”

Duffy is surprised at the stretching of time in the final days of her mother’s life: “I can’t work, can’t think, can’t sleep. I never knew dying could take so long.” If you’ve cared for a loved one on hospice, did you experience the same distortion of time as Duffy?

The piece ends with a touching, and surprising, kiss from Duffy’s mother: “Something long dormant stirs beneath my chest where my heart lies. I lay my head on her chest where her heart still beats.”

Writing Prompt: Have you had difficulty explaining any aspect of end of life care to a spouse, child or parent of a dying patient? Often loved ones have discussed clear wishes of what they would like done, and not done, when nearing the end of life. When it comes time to actually carry out actions according to these wishes though, this still can remain a painful process. Have you experienced this first hand? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: The Name of the Dog

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In The New England Journal of Medicine essay “The Name of the Dog,” physician Taimur Safder remembers a lesson learned early in residency. Safder is stumped when, “as a freshly minted doctor,” he presents “a patient who was admitted for chest pain after walking his dog” and his attending asks a curious question: “‘What was the name of his dog?'” Safder is initially perplexed as to why this question even matters, but when the attending physician takes the group to the patient’s bedside to inquire, he realizes that very question “led to a transformation I did not fully appreciate at the time: there was an actual person behind that hospital-issued gown.”

This lesson proves valuable to Safder’s medical training. Through it, he forms similar connections with patients that allow him to “have difficult discussions about [the patient’s] immigration status and what it meant for his treatment plan,” and sign a “treaty under which [Safder] would read the ‘studies’ [the patient] brought in about black cherry and milk thistle and she would start taking one new medication every 2 months.” In learning about a person beyond their identity simply as a patient, trust develops and the patient-physician relationship can grow.

While caring for a patient who eventually ends up in hospice, Safder comes to another realization: “the question that I’d been carrying around since my first day of residency could work another type of transformation: it helped my patients see the person behind the white coat.”

Writing Prompt: Has there been a question you’ve asked a patient that revealed essential information about them as a person? Have you, as a patient, been asked a question by a medical provider that may not have seemed directly medically relevant but was important to them understanding you as a person? What was the question? What did it reveal? Write for 10 minutes.

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Narrative Medicine Monday: What Insomniacs Do in Bed

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Donna Steiner lets us know “What Insomniacs Do in Bed” in her poem in The Healing Muse. Steiner touches on those heightened moments in the middle of the night, when the rest of the world seems muted. She admires much, including “the under-valued texture of flannel sheets” and “the capacity of our aging lungs.” She notices the absence of all sorts of things, including “of rain, of drizzle, of shower…” Steiner wonders about “germs and mites and viruses, and whether they multiply right now,” a vivid recognition of what those of us up at ungodly hours imagine.

Over the past two decades I’ve often been awake in the middle of the night, occasionally due to insomnia but more frequently because of medical work or motherhood, nursing my own babe or delivering a new life into the world in the pale hours of almost-morning. Steiner issues a call to accept the gift of repetition, that it is a “form of education.” Perhaps the most significant to the insomniac is the “merciful repetition of daybreak.”

Writing Prompt: Have you suffered from insomnia? Does Steiner’s poem resonate with you? What do you do when you’re up at night and no one else is? If you’ve been up in the middle of the night for another reason (residency, parenting), what did you notice about being awake when the rest of the world is sleeping? Write for 10 minutes.

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Narrative Medicine Monday: Disease’s Gifts

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In “Disease’s Gifts,” poet Joy Ladin muses on fear and life and death in the face of illness. Ladin outlines the paradoxes of disease: “That you can be fearless / when fear is all you have” and that “you aren’t alone in loneliness.” This poem is an encouragement, a call to overcome and accept and succeed, even though “fear inverts / the meaning of success.” Ladin’s poem resonates because it offers words of hope while acknowledging the incongruity of illness. Disease can feel like “the end of the world,” and yet, Ladin contends, we all want to believe “you will survive it.”

Writing Prompt: What gifts, if any, have you experienced through illness? What role do you think fear plays in disease? Review Ladin’s list in the second to last stanza; what do you need to live? Write for 10 minutes.

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Narrative Medicine Monday: The Narrative Messiness of Chronic Illness

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Ellen O’Connell Whittet ponders “The Narrative Messiness of Chronic Illness” in a recent piece in Ploughshares. O’Connell Whittet acknowledges that illness narratives may be challenging to show in scene and that “suffering… doesn’t always have a satisfactory ending.” Yet, she notes that illness memoirs, such as those of Paul Kalanithi, Lucy Grealy, Jean-Dominique Bauby and Porochista Khakpour can be particularly engaging, “turning the story of an ailing body into a work of art.”

Bauby, who suffers from “locked-in syndrome,” tells a grueling story without a tidy ending. O’Connell Whittet grimly concludes one tragedy of his chronic illness narrative is that he “cannot… count on getting well.”

O’Connell Whittet recognizes the importance of defining a diagnosis to Porochista Khakpour in her memoir “Sick.” When Khakpour “laments to her acupuncturist that she is still without a diagnosis, her acupuncturist asks, ‘does it need a name?’ But without a name, Khakpour cannot pinpoint the words she needs to convince us, or herself, of the extent of her suffering.” How important to suffering are the words we use to define illness? Does having a specific diagnosis validate that suffering, to ourselves or to others, in a different way?

O’Connell Whittet recognizes “Khakpour’s refusal to give us order out of illness’s chaos” and eventually determines that “[r]eading accounts of chronic illness allows us to embrace the ambiguity of the body and our experiences within it.”

Writing Prompt: Have you read a chronic illness memoir that turned a “story of an ailing body into a work of art?” Think about a particular part of that book or essay that was most enthralling or enlightening. What did you learn? How did it affect you? Did the structure mimic “illness’s chaos?” Write for 10 minutes.

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Narrative Medicine Monday: In Life’s Last Moments, Open a Window

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British physician and author Rachel Clarke advises in The New York Times that to care best for our terminally ill patients we should, “In Life’s Last Moments, Open a Window.” Dr. Clarke relays the story of a patient dying of cancer who was nonverbal but clearly in anguish. “We tried talking, listening, morphine. His agitation only grew.”

Clarke initially questions if the “sheer vitality of nature might be an affront to patients so close to the end of life — a kind of impudent abundance.” Instead she finds, as in the case of her patient with tongue cancer who merely wanted his door opened wide to the adjacent garden, many patients develop an “intense solace… in the natural world.”

It is the song of a blackbird outside her window that gives one of Clarke’s breast cancer patients perspective that even “[c]ancer is part of nature too, and that is something I have to accept, and learn to live and die with.”

Clarke shuns the idea that end of life care needs to equate to a “dark and dismal place.” Instead, she contends that what should dominate hospice “is not proximity to death but the best bits of living.”

Writing Prompt: Clarke’s patient Diane notes that cancer is a part of nature. What are the implications of this statement for you as a medical provider, as a patient, as a loved one? When you’ve been ill, have you found solace in nature? Write for 10 minutes.

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Narrative Medicine Monday: Vicious

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Tim Cunningham gives us a glimpse of Abdul, a teenage Rohingya refugee he encounters in a Bangladesh camp, in Intima‘s “Vicious.” Cunningham notes that his “belly was swollen like the rice fields” and “[t]hough described by many as non-literate because he had no official access to school, he could read the Quran with ease. His recitation of its Surahs was exquisite.”

When Cunningham meets Abdul in clinic, his pain is “everywhere,” as if “[h]is genocide had shifted internally, an annihilation of his once-healthy cells.” Abdul had lost his appetite entirely, did not “miss dahl and rice, mangos and bananas, though he knew that he should. ”

Cunningham imagines where he might transfer Abdul, had he the resources: “They would have diagnostics for his hepatomegaly and cachexia. They would have 24-hour staff, teams of nurses and physicians to treat and listen his life-story. The providers would all speak Rohingya. These thoughts were but daydreams. For extraordinary diseases, with extraordinary measures and extraordinary means, there are ways to treat illness.  If you are Rohingya, there is nothing.”

Cunningham’s prose elicits a visceral response to his patient’s physical and emotional trials, but it is Abdul’s word of response to a difficult intravenous stick that give both Cunningham and the reader pause: “Vicious.”

Writing Prompt: If you’re a medical provider, are there certain assumptions you make about a group of patients you see? How did you feel when Abdul repeatedly says “vicious?” What do you think that word might mean to him? What does it mean to you? Have you worked in a resource-poor setting or with a marginalized group of patients before? Recall an encounter with a patient. Write for 10 minutes.

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Narrative Medicine Monday: Preparation

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Abigail Lin’s poem “Preparation” in the Journal of the American Medical Association begins with a heartbeat as the focus of a medical student’s studies. She notes “we studied valves as if they were pipes: / what makes them rust, or clog.” There’s a note of bravado as the student starts their journey in medicine: they “marveled… as if we had built it ourselves.”

The humility comes later, realizing the fallacy in believing that “we could learn the architecture of grief / simply by examining blueprints.”

I remember marveling at the intricacies of design in my college introductory biology courses. I had in mind that I wanted to be a physician, but one of my most surprising revelations was learning about botany. I was amazed by the specificity of design in plants, the complex workings of how they grow, receive nourishment from the sun, from the rain; how they give back to the earth.

Lin’s poem is a caution to new medical providers. Much of our learning is in the machinery of the patient, the inner workings of the body. So much more is involved in treating the patient, not merely the disease.

Writing Prompt: If you are a medical provider, recall when you first started studying medicine. Were you naive, as Lin’s poem asserts? Is there something you’ve studied that you’ve marveled at? Did you learn a more nuanced appreciation as you progressed in your career? Recall an instance that contributed to that maturity. Write for 10 minutes.

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Narrative Medicine Monday: And Still We Believed

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Emergency physician Dr. Rebekah Mannix relays the story of her teenage goddaughter who developed vomiting and eventually a dire diagnosis of metastatic cancer in JAMA’s “And Still We Believed.”

Mannix finds herself researching experimental treatments, hoping for a “miracle,” but unable to find any in the medical world: “We did not comprehend that someone so healthy and vibrant…could succumb.” Even after the patient was transferred to comfort measures only, Mannix admits she “still wasn’t ‘there’ yet.” “Even as I knew she would die, I believed she wouldn’t.”

Mannix speaks to the idea that even as physicians, as scientists, we “know better” but still our humanity takes precedence over logic and understanding. There is a lesson here for medical providers. Patients may comprehend what we tell them, but they might not always believe it: “Even as they sit holding the hand of a loved one on a morphine drip–whose organs have shut down, whose words have ceased–they still may not believe death will come.”

Writing Prompt: Have you ever experienced a dire diagnosis for your yourself or a loved one and not believed it? If you’re a physician, how can we best navigate supporting a patient or their family when, despite clear evidence to the contrary, they “still believe.” Write for 10 minutes.

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