Narrative Medicine

Narrative Medicine Monday: GUTS

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I previously featured author Janet Buttenwieser’s essay, “The Colostomy Diaries,” on a Narrative Medicine Monday post. Today, I’m pleased to highlight her similarly humorous and heartfelt memoir, GUTS.

Buttenwieser writes with a comfortable familiarity, weaving candor into her story of misdiagnosis, treatment and loss. I felt like I was reading the words of a dear friend; Buttenwieser is authentic and relatable. She navigates the foreign and often perplexing world of medicine as a young patient, stricken with a debilitating illness. She finds herself getting regular CT scans and under the care of a surgical resident, contemplating operative measures: “I decided right then that I liked the resident better than my regular doctor. In my growing survey of medical professionals, I’d begun to notice a trend. The younger the doctor, the more he or she listened to me. They asked questions …”

I was particularly struck by a passage where Buttenwieser describes her overhearing a paramedic relay her emergency case to the hospital where the ambulance is transporting her to. He uses the common medical term “chief complaint.” She bristles at the phrasing, stating “I feel angry at the way we patients are portrayed by the medical establishment as whiny toddlers who need a nap. Patient complains of gunshot wound to the head. Patient complains of missing limb following leg amputation.” There is phrasing that becomes commonplace during medical training, traditional wording that is passed down in the name of congruity. To an outsider, though, I can appreciate how unfeeling much of this must seem. Medical-ese leaves much to be desired in the realm of patient-centeredness.

I was privileged to meet the local author briefly at a book signing and will attend a book club this week where she will also be in attendance. I admire her writing skills as well as her contribution to an important perspective – that of a young patient. GUTS has solidified its place among my favorite narrative medicine memoirs, including In Shock, When Breath Becomes Airand On Call.

Writing Prompt: Have you encountered a certain trend among medical professionals, as did Buttenwieser? Do you agree that younger medical providers are better listeners? As a self-proclaimed rule follower, Buttenwieser finds it difficult, especially early in her bout with disease, to advocate for herself or question her initial physician’s diagnosis and treatment plan. Have you faced a similar challenge in the medical world? Write for 10 minutes.

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Narrative Medicine

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

Narrative Medicine Monday: What I Would Give

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Physician and poet Rafael Campo has published several collections of poetry and prose. In his poem “What I Would Give,” Campo outlines the “usual prescription” given by physician to patient: “reassurance that their lungs sound fine” or “that the mole they’ve noticed change is not a melanoma…” He instead would like to offer them “my astonishment at sudden rainfall like the whole world weeping” and “the joy I felt while staring in your eyes as you learned epidemiology.”

Campo’s poem makes me think about all that we give to patients with each interaction, each hospitalization, over decades of caring for a patient and their family. Should we reorient the standard prescription for cure? As a patient, do you get reassurance from your medical provider? Comfort? What would be the best prescription?

Writing Prompt: If you could give anything to your patients, what would you give? As a patient, what do you expect to receive from your physician? What gives you comfort? Write for 10 minutes.

You can read more about Rafael Campo and his thoughts on the intersection of poetry and medicine in this interview with Cortney Davis, whose work I’ve featured on a previous Narrative Medicine Monday.

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Narrative Medicine

Narrative Medicine Monday: Standardized Patient

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Artist Kerry Tribe’s latest installment at the San Francisco Museum of Modern Art, Standardized Patient, brought back memories for me of medical school. The article on Tribe’s work by Hyperallergenic describes her as “interested in memory, language and awkward connections.” The relationship between patients and doctors-in-training certainly consists of awkward connections. I remember the standardized patients we worked with to learn how to take a basic medical history, how to perform a physical exam, even how to do pelvic and rectal exams without as much fumbling and hesitation inherent in such a personal exam. All the standardized patients I encountered were professional and helpful, giving valuable feedback and helping us prepare for a new component of the medical licensing exam: that of a standardized patient interaction. For this portion of the exam we flew down to California (the closest location for those of us training in the Pacific Northwest) and stood outside nondescript doors in our short white coats, much like the medical students in the last photo of this piece. I remember feeling terrified at what this patient, this actor, might judge me on. Was I too friendly? Not personable enough? Did I make enough eye contact? Ask the right questions? Perform the right physical exam? Give the correct reassurance and explanation?

Tribe’s installment “captures the atmosphere of a hospital: that draggy kind of feeling, as though everything is tired and washed out, as if you are waiting for something.” She shows the uncertainty of physicians-in-training: “We can see the tentativeness of the prospective doctor, as they question one SP about how her boyfriend has treated her and see how the doctor tries to comfort her.” I like that Tribe captures the nuances of medical training, that “[w]atching this display of effort creates empathy for the doctors as well as the actors. Seeing the feelings of both — impatience, kindness, concern — flash across their faces, you almost forget they’re acting….”

Writing Prompt: If you’re a physician, recall a particular interaction with a standardized patient during your training. What did it feel like? What did you learn? As a patient, were you aware that your physician trained with actors as patients? Does this seem strange or is it encouraging to you? What kind of focused training on communication or empathy might be helpful for your doctor today? Write for 10 minutes.

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Narrative Medicine

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: To Seize, To Grasp

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Writer Heather Kirn Lanier describes her daughter’s seizures in “To Seize, To Grasp.” Lanier begins the flash essay outlining her infant daughter’s first seizure: “not the worst one, although it brought the biggest shock.” Lanier relays what it’s like to be thrust into the medical world and terminology of a new diagnosis: “New traumas gift new glossaries. Words become boxes into which you can pack the pain.” She achingly describes the pain of watching her child seize, unable to do anything but wait: “But of course he could only do what I could do, which was inject medicine and wait.” Lanier closes the piece with her daughter’s worst seizure, which was not the longest. What was it that made this last one so frightening for Lanier? Can you relate to grasping onto that which can be lost at any second?

Writing Prompt: Have you been suddenly thrust into the medical world because of your own illness or a loved one’s diagnosis? What was it like to learn a new vocabulary and way of interacting with the medical system? What did you find most challenging or surprising? Write for 10 minutes.

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Narrative Medicine Monday: Air Hunger

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The narrator visits her mother in the hospital in “Air Hunger,” a striking short essay found in University of Virginia’s narrative medicine journal Hospital Drive. 

Two months have passed since she last saw her mother, but in the interim the narrator notes her mother has “become a patient.” The details the writer shares give us a glimpse into how her mother’s illness has changed her over time. Her mother barely touches the lunch tray beside her hospital bed: “She picks at her food, but it’s air that she’s hungry for.” The narrator wants to ask her mom how she feels, but already knows the answer: “I can see what I see, I can hear what I hear.”

Writing Prompt: Have you witnessed a loved one’s deterioration of health over time? What was it like to see them in one light and weeks or months later note a dramatic change? Do you remember a moment when they became, either to themselves, to you or to others, “a patient?” 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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