Narrative Medicine

Narrative Medicine Monday: In Search of Collateral Beauty

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Writer Kat Solomon is “In Search of Collateral Beauty” in her recent Ploughshares essay. Solomon describes being wheeled into the Neonatal Intensive Care Unit to see her premature newborn, noting that “time has slipped away” but that “now, I am a mother.” Solomon provides a vivid description of the NICU, the “little room [with] its own symphony of beeps and blips,” the “plastic isolettes and incubators.” Her baby has arrived five weeks early. The first night, untethered to any tubes or isolation, her daughter is simply monitored, Solomon told she may be released the following day.

The next morning, though, they find the situation drastically different, their baby “sleeping in an enclosed isolette with an incubator like the kind I have seen on television, and she is connected to several wires and blinking machines.” Solomon has difficulty registering the change, and reaches out to touch her daughter: “I put my hand through the sleeve in the incubator but before my fingers reach her forehead, a nurse enters behind me. ‘Don’t touch her!’ she snaps. ‘She has a long day ahead of her.'” As medical providers we often forget that this is a foreign world to our patients and their families, a point Solomon expands on throughout her piece.

Though assured otherwise, Solomon can’t shake the thought that her baby’s feeding difficulties “must have happened because I was not there—would not have happened if I had been with her.” Solomon’s irrationality is relatable. As mothers, we often, even with evidence to the contrary, blame ourselves.

The language of the NICU strikes Solomon, a writer, as rich with metaphor. She Googles preterm infants and finds that “thirty-five weekers” are called “changelings.” Solomon sees her daughter as a changeling, noting the ephemeral quality of existence: “I’ve made a life, I think, but only now do I understand that in doing so I have also made a death.”

The young NICU doctor asks Solomon and her husband to sit and she realizes that this is an ominous request: “he has bad news, like on television.” The doctor explains that their daughter needs more tests to determine how best to treat her persistently distended abdomen. Solomon asks if it will resolve on it’s own, but the doctor replies that spontaneous resolution is no longer likely.

During Solomon’s experience in the NICU, she thinks of Lorrie Moore’s story “People Like That Are the Only People Here: Canonical Babbling in Peed Onk.” Moore’s story describes a child who suddenly becomes ill and her mother’s experience in the other “country” that is pediatric oncology. Moore’s short story is insightful and even humorous, and is one of my favorites to discuss with health professionals. The mother in Moore’s story finds a way to navigate this foreign land of pediatric oncology, but not without difficult interactions with medial providers, and the system, along the way. Solomon, too, finds much in Moore’s story relatable.

Solomon has a wrenching wait while her daughter has more tests, and eventually is called with the good news that the blockage resolved. She is, of course, relieved, but also angry, “directed completely at the doctor who told us that this outcome was no longer likely.” Can you relate to her experience? For those of us saturated in the medical world, it’s easy to forget the impact our prognosis, our words, may have, the fear they may instill.

Remaining in the NICU for observation, Solomon’s daughter has a “spell” where she stops breathing and this, the nurse informs them, means five more days in the hospital. This frightening episode ends up being the last of their “trials” in the NICU, but Solomon later reflects that, similarly to the mother in Moore’s story, there is a grief inherent in the “imagined version of the way things were supposed to go, the false sense of security that bad things only happen to other people.” I think those who suffer from severe illness, or care for those who do, often feel this kind of grief. Even when things improve, we, like Solomon, know in comparison we should feel “lucky” but can’t help but can’t help but mourn the loss of a cocooning naiveté.

Writing Prompt: What comes to your mind when you hear “changeling” or “spell?” What are some of the words we use in medicine that have other meanings, and what effect might these have on the patient or their family? If you’re not in medicine, think of words that you’ve heard in the hospital or clinic that conjured a different thought or a metaphor. Alternatively, read Lorrie Moore’s “People Like That Are the Only People Here: Canonical Babbling in Peed Onk” and consider if you agree that, even with illness, “there’s a lot of collateral beauty along the way.” Write for 10 minutes.

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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 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 Monday: The Train

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I featured one of Dr. Thomas Gibbs’ other essays on my very first Narrative Medicine Monday post in 2016. Today’s piece, found in the excellent flash essay journal Brevity, highlights another experience altogether. Dr. Gibbs is an obstetrician and therefore encounters dramatic medical emergencies that can put two lives at risk simultaneously. This was the case in “The Train,” when Gibbs is paged in the early morning hours about a bleeding pregnant patient who works in his office. Gibbs tells her husband to drive the patient himself to the hospital as he knows the urgency of the situation and that the local EMTs would take longer to get her there. He treats the patient as she arrives and disaster is averted. When he goes to inform the patient’s husband in the waiting room, he finds the husband shaken. In just getting to the hospital, all of them were in danger.

This piece made me think of all the advice we give patients, all the instructions we get from well-meaning physicians. Sometimes this advice has unintended consequences, either because patients misinterpret what was said or the instructions weren’t communicated effectively or because of events entirely out of anyone’s control. When you read the final lines of this essay, what were your first thoughts about the situation?

Writing Prompt: Have you given or gotten advice from a physician that, when followed, caused unforeseen consequences? Consider what happened or imagine what could have happened. As a physician, how did this change your medical practice or, as a patient, your relationship with that physician? Write for 10 minutes.

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Narrative Medicine Monday: What Patients Say, What Doctors Hear

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Dr. Danielle Ofri’s latest book, What Patients Say, What Doctors Hear is a call to re-examine the way doctors and patients communicate with each other. Through fascinating patient examples and directed research, Ofri illuminates the pitfalls in the current medical system that lead to miscommunication and, ultimately, worse heath outcomes.

I was particularly struck by Ofri’s call for physicians to become better listeners, and thus “co-narrators” of a patient’s story. This term was coined by researcher Janet Bavelas, whose study shows that how physicians listen to a patient’s story in fact contributes to the shaping of that narrative. Ofri asserts that “medicine is still fundamentally a human endeavor,” that one of the most significant ways we can advance health care is by improving one of our most basic tools: communication.

I’m thrilled Dr. Ofri will be speaking to my medical group this week and I’ll be able to meet her in person. Dr. Ofri has written many books and essays important to the world of narrative medicine and is the Editor-in-Chief of the Bellevue Literary Review.

Writing Prompt: One chapter in Ofri’s book outlines a “Chief Listening Officer” who was hired by a hospital to listen to patients and translate their needs back to the hospital so they could improve care. Ofri notes the value of this, that “being listened to so attentively is a remarkably energizing experience. It makes you eager to continue engaging.” Have you ever had an interaction with a medical provider who listened to you and your story in this way? How did it make you feel? Did that experience benefit your health in any way? Write for 10 minutes.

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Narrative Medicine Monday: The Art of Translating Science

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Lise Saffran emphasizes the importance of meaning in public health communication in “The Art of Translating Science.” This conversation is imperative amidst a culture where many important topics become highly polarized and politicized. Saffran argues that it is important for scientists to not just speak more plainly, but emphasize understanding of a concept. She notes that this is more challenging today because “when it comes to politicized topics, our ability to understand is often overwhelmed by our inability to hear.”

As a primary care physician, much of what I do in my daily practice is translational work: explaining a diagnosis, a lab test result, the need for a certain medication, the risks and benefits involved in preventive screening. The goal is to ensure the patient understands the meaning of the medicine, not just the facts. As Saffran notes, “a single word may change the meaning of the whole story.” A physician is also interpreting the patient’s story, taking the narrative they provide about their illness and using this information to determine best next steps toward diagnosis and improving their health. A scientist communicating about public health issues needs to convey concepts on a much broader scale. Our ability to translate effectively will dictate our health as individuals and as a society going forward.

Writing Prompt: Think of a time when you didn’t fully understand what a physician was saying to you. Perhaps it involved a specific diagnosis or importance of a new medication prescribed or test ordered. Did you get the facts but miss the meaning? If you’re a medical provider, think about a time that you missed a significant part of a patient’s narrative. Did that lack of understanding affect their diagnosis or treatment plan? Alternatively, consider a time you read an article on a public health topic such as climate change or vaccinations. Did you understand the underlying purpose of the piece? Have you had a conversation with someone who disagrees with your viewpoint on such topics? What might have increased your ability to understand each other? Write for 10 minutes.

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Narrative Medicine Monday: Someone Else’s Pain

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Brenna Working Lemieux’s poem “Someone Else’s Pain” illustrates the struggle to understand what others are feeling, how challenging it can be to fully grasp another’s suffering. The patient experiences “some driven-screw anguish that flares” that they attempt to explain. Lemieux can only “nod or shake [her] head.”

I can relate to Lemieux; medical providers regularly face the challenge to decipher a patient’s explanation of illness or pain. I delivered babies for many years before I had my own children. After I experienced labor for the first time myself, I cringed recalling many of the comments, modeled after other medical providers, I had made to laboring patients prior to experiencing that pain myself. I had been sympathetic to their pain but could not embody empathy in the same way I could after I had gone through a similar experience. I had no reference point to the crushing agony of contractions that I would later understand. Of course, we can’t fully experience everything our patients go through. However, we can become better at listening and responding to the story they are trying to tell.

Lemieux likens listening to the patient describe their pain to the focus she had in art class, “trying in vain to capture” an image of her hand. Her poem illustrates the nuances and importance of narrative to medicine, the need to hone our listening and storytelling skills to improve the relationship between patient and physician and, ultimately, medical care as a whole.

Writing Prompt: What is the biggest challenge in understanding another person’s pain or illness? Have you ever tried to describe such an experience to a friend or healthcare provider? Think of a time you were on the explaining or the listening end of such a conversation. Write for 10 minutes.

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Narrative Medicine Monday: Primum Non Nocere:

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Emma Barnard is a visual artist and researcher focusing on fine art and medicine. Her latest installment, “Primum Non Nocere,” reflects the patient experience. Barnard’s work is influenced by her own interactions with the medical world as a patient and her research into this arena, including Michel Foucault’s term ‘medical gaze,’ used to “denote the dehumanizing medical separation of the patient’s body from the patient’s person or identity.”

I’m interested in Barnard’s method of creating art, where she follows a patient into the exam room and questions them right after, producing a drawing based on their response. She notes that many of the physicians are surprised at the resulting artwork: “During the consultation process patients show little emotion; it’s quite difficult to read how they really feel about the impact of the words spoken during the clinical encounter.”

Barnard also incorporates the physician and surgeon perspectives. Could you relate to her images of a physician’s experience in a busy clinic practice?  I could certainly identify with the depiction of others superseding the “self” and various demands of work and home life feeling compartmentalized. Do you agree with the neurosurgeons’ statement that as physicians we view a division between us and patients and that we have to understand this alienation “if we are to find ways to soothe it and become connected to our patients and to the essence of medicine?”

Writing Prompt: As a patient, have you ever experienced Foucault’s ‘medical gaze,’ where you perceived a provider as seeing you only as a body, rather than recognizing your personhood? What did that feel like? As a medical provider, have you ever caught yourself interacting this way with a patient? How can we work to overcome this tendency? Write for 10 minutes.

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Narrative Medicine Monday: Locked-in Syndrome

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Pakistani bioethicist Anika Khan reviews Jean-Dominique Bauby’s remarkable story in her essay “Locked-in syndrome: inside the cocoon.” In it, she describes how Bauby, an editor of a prominent magazine who suffered a debilitating stroke, lived out his days entirely paralyzed but with mental clarity completely intact. Bauby’s only method of communication, and how he eventually wrote his 1997 book The Diving Bell and the Butterfly was by blinking with his left eyelid. He used a French alphabet provided by his speech therapist to painstakingly blink his way to communication with the outer world.

Khan relays some of Bauby’s remarkable insights into living in such a state and she also reflects on how medical providers need to take a “more empathetic look at the incapacity and helplessness experienced not only by patients with locked-in syndrome, but by analogy, other patients who have no way of giving voice to their experience of sickness. Often, patients become diseases, numbers and syndromes to healthcare professionals who have repeatedly seen illness and have lost the capacity to relate to the experiences of patients.”

Writing Prompt: Have you as a patient ever felt misunderstood by your medical provider? What were you trying to relay and what was the response that revealed to you the miscommunication? Think about your visceral reaction to this encounter. As providers, what specifically have you done to combat the risk of patients becoming “diseases, numbers and syndromes?” How do you maintain this empathy while still preserving some emotional boundaries? Write for 10 minutes.

 

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Narrative Medicine Monday: Found in translation?

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Prolific writer, physician and narrative medicine pioneer Danielle Ofri writes about the assumptions we make and the significance of a shared common language in “Found in translation?,” an excerpt from her book Medicine in Translation.

Using interpreters for a medical interview is a skill learned in medical school and honed in residency. Medical providers are advised not to use family members as interpreters, as this could cause the patient to censor themselves or omit important details.   Sometimes though, given my monolinguilism, there isn’t much of a choice. I’ve needed many interpreters over the years, both on the phone and in person. There have been times, even with trained interpreters, that I’ve had the sinking suspicion that something significant was lost in translation. It may be because I ask a question, the patient and translator chat back and forth for a few minutes and in the end the interpreter relays a one sentence reply. Or simply because I realize, as Ofri points out in this piece, that the nuances and casual aspect of communication is lost when a third person enters the equation. Ofri notes her conversation with the patient through an interpreter was “polite and business-like. I asked the questions, he supplied the answers.”

Ofri makes certain assumptions about what language skills her Congolese patient might have or lack. The patient, in turn, also is surprised to learn that Ofri, a white American, speaks a language other than English. She notes how the dynamic of the visit changes after they discover they both speak Spanish. Suddenly, without an interpreter between them, they’re able to communicate on a more casual level. They each learn specific details about each other’s personal history; they “chatted happily.” 

Writing Prompt: Think of a time you’ve had to interact, either in medicine or travel, with another person who didn’t speak the same language. Did you feel like you were really communicating, getting to know the other person? What were your assumptions? If you’ve worked with a medical interpreter before, either in person or through the phone, how did this affect the interaction with the patient or physician? Were you worried something important was lost in translation? Write for 10 minutes. 

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