Narrative Medicine Monday: Locked-in Syndrome

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: The Sink

Author Kate Ristau writes about her son’s heart surgery in “The Sink.” She starts the essay remembering her mother’s farmhouse sink, then describes the simple motions she went through at her own kitchen sink the morning of her son’s surgery.

I like how Ristau uses a common utilitarian object as a focal point in this piece. She describes in detail washing her hands at the sink in the hospital waiting room. She implies that these actions grounded her – loading her dishwasher, washing her hands – during this tumultuous life event. Ristau relays the telltale sign that her son, when well at home, has actually brushed his teeth: “That’s how I know he brushed them–the splash of color sliding down the porcelain.”

The reader is thrust into the narrator’s experience waiting for her son to wake up from anesthesia. When he does, the details she provides allow the reader to enter into her experience as the mother of the young patient: “…we used words like valves, clots, stitches, glue and morphine. Complications, IVs, shots, and applesauce, along with fluid in his chest cavity and so many possible futures balanced on the edge of his hospital bed.” Ristau reflects on how her son eventually asks for something quite surprising, out of his usual character, when he is finally able to get up and out of bed. The reader gets the sense that, on the other side of this surgery, he is changed, as is Ristau.

Writing Prompt: Think of an object in your home or workplace that is also found in a doctor’s office or hospital. Consider a plate of food, a chair, a computer, a bed. Describe the experience of that object when at home versus when you or a loved one were ill. Write for 10 minutes.

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Narrative Medicine Monday: New York Lungs

In her poem, “New York Lungs,” medical student Slavena Salve Nissan writes of the intimacy of knowing a patient “underneath her skin fascia fat.”  Nissan notes how her beloved city left a mark on her patient’s lungs. She thinks about the people who loved her patient and how even they didn’t know that the patient looks “like a frida kahlo painting on the inside.”

Place is a central theme in this poem. I like the subtle imagery of the medical student and her patient breathing the same air, from the same city, in and out of their lungs. This commonality, too, connects them.  

As a medical provider, we experience intimacies with patients that are both strange and surreal. It is a great privilege that our patients allow us, for the purpose of diagnosis or treatment, to perform these intrusions: cutting into the skin, sampling cells from the cervix, looking into the ears, listening to personal stories, palpating the lymph nodes. Over time this can become routine to the medical practitioner, but I do still wonder, and hope I never lose keen curiosity, about the lives of my patients beyond the exam room. 

Writing Prompt: Reflect on the vulnerability between a patient and physician. Is it surprising that we can be so open and trusting with a near stranger? Think about such a time, perhaps a surgical procedure or mental illness or embarassing symptom, when you put your complete trust in your medical provider. What was that like? Write for 10 minutes. 

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Published: Timeline

I’ve tried to write a piece like Timeline several times. It’s simply a chronicle of my typical work day, but, in the past, I never was able to get it just right. It didn’t flow sufficiently, wasn’t a clear reflection of the exhaustion I feel at the end of the day. 

When I discovered Pulse’s “More Voices” column theme this month was “Stress and Burnout,” I felt compelled to finish this piece for submission. It was initially much longer, but I think the confines of the short word count (less than 400) was helpful in honing it to only the necessities. Previous versions of this essay were written in first person or third person. Second person, I’ve discovered, suits the purpose of the piece. My goal is to place the reader in the shoes of the primary care physician, feel the weight of her day, the exhaustion inherent in the constant churn of a general practitioner’s practice. I hope this piece provides a snapshot of a day-in-the-life of a family physician, and evokes a thoughtful reflection on the state of our health care system and the very real crisis of physician burnout. 

I’m grateful to Pulse for publishing Timeline and for their regular promotion of issues relevant to patients and medical providers through narrative medicine poetry and prose.

Writing prompt: When do you feel most stressed at work? When do you feel energized? Have you witnessed signs of burnout in your colleagues or your own medical provider? List your own timeline of a typical workday. How do you feel when you read it back? Write for 10 minutes. 

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Narrative Medicine Monday: The Last Heartbeat

Cortney Davis’ “The Last Heartbeat” explores her competing identities as daughter and nurse at her dying mother’s bedside. Davis opens the poem as she holds her mother’s hand, counting her last heartbeats, witnessing her last breath. She ends with greater questions of life and soul as she walks with a friend through a cemetery.

Writing Prompt: If you’ve been at the bedside of a loved one as they died, what do you remember most? What have you forgotten? What about at the bedside of a terminal patient? Did this experience prompt greater questions about the soul? Write for 10 minutes.

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Narrative Medicine Monday: How We Wrestle Is Who We Are

Writer Brian Doyle’s son is unexpectedly born with a heart defect. Doyle reflects, a decade later,  about his memory of this diagnosis and subsequent surgeries in “How We Wrestle Is Who We Are.” He describes the heartbreaking clarity of that time, “thinking that his operations would either work or not and he would either live or die.” Faced with the potentially catastrophic outcomes of the situation, Doyle also asks himself some difficult, honest, heartrending questions. Do you agree with Doyle’s assertion that “what we want to be is never what we are?”

Writing Prompt: Consider a time when a loved one or patient was gravely ill. What thoughts and questions did you wrestle with? Consider writing a letter, as if to a friend or to yourself, about your struggle. Write for 10 minutes.

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Published: Nine Lives


I’m thrilled to announce my essay “Fired” appears in a new book, Nine Lives: A Life in Ten Minutes Anthologyforthcoming from Chop Suey Books Books in June. Valley Haggard, of Life in 10 Minutes, is the mastermind and editor behind this exciting project. I can’t wait to get my hands on this compilation! You can purchase your own copy of Nine Lives, which is made up of short essays that follow the “ages and stages of life” online on June 14 from Chop Suey Books.

My piece that appears in this book highlights a moment I shared with my grandpa “Gar” during the last days of his life. In honor of Narrative Medicine Monday and this short personal piece, today’s writing prompt will focus on hospice.

Writing Prompt: Have you spent time with someone on hospice or near the end of their life? What do you remember the most? What have you forgotten? If you’re a medical provider, how does caring for someone as a medical professional compare with caring for a loved one at the end of life? If the experience was overwhelming, try focusing on the details: a glance, a thought, a smell, an item, a phrase. Write for 10 minutes. 

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Narrative Medicine Monday: Found in translation?

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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Narrative Medicine Monday: Falling Fifth

Anesthesiologist and poet Audrey Schafer aruges that anesthesiology is actually an incredibly intimate medical specialty. In her poem, “Falling Fifth: The Neurosurgery Patient and the Anesthesiologist,” she tells NPR’s Sara Wong that her speciality is incorrectly viewed as more “knob-and-dial oriented than people-oriented.” Her poem outlines a poignant moment between her and a patient, hugging over “wires, bandages, the spaghetti of tubes, the upright side rail” in the sterility of the OR.

I think of the specialties that seemingly don’t interact as much with patients: radiology, pathology. I can see a familiarity that goes beyond even my most personal interactions with patients as a primary care physician. Radiologists see beyond a person’s skin, through their muscles, bones and vital organs. Pathologists meet a patient on a microscopic tissue level. I like how Schafer displays the connectedness between the anesthesiologist and patient: the physician serves as a trusted guide out of and back into consciousness. 

Writing Prompt: Have you ever had anesthesia? What was your experience both going under and coming out of a conscious state? Alternatively, are you in a medical speciality or type of profession that doesn’t traditionally interact much with people? Is there a component of your daily work that’s surprisingly intimate or keeps you connected to others? Write for 10 minutes. 

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Narrative Medicine Monday: The Evidence-Based Metaphor

Medical student Brit Trogen argues that metaphor is not only an important tool in doctor-patient communication but that physicians should be trained to use the most effective metaphors to deliver medical information. Her recent article “The Evidence-Based Metaphor,” uses the example of the medical student’s simulated patient encounter, where actors portray patients and then provide feedback to aspiring physicians about their communication skills. All medical students go through rigorous testing to ensure they can manage the science of medicine, but the more nuanced communication skills required to be an effective clinician can be more difficult to both train and test. Trogen wonders what if there were a way to help guide young physicians toward better communication with their patients, thereby improving the health and well-being of those they’re tasked to care for.

Trogen notes that time pressures are evident for physicians in today’s medical system: “With appointment times creeping ever shorter, a physician may have only moments to explain a complicated scientific concept to his or her patient in a way that is both clear and memorable.” I struggle with this every day in my own practice; many of these concepts take years of study to understand fully. How can they best be distilled down so patients can make a truly informed decision?

I appreciate Trogen’s idea to promote “evidence-based communication” just like we adhere to the values of evidence-based medicine. This is the idea that the treatments we prescribe, the screening modalities we suggest, the procedures we perform be based on research-driven facts, substantiated studies that show that this plan is the best course of action for most. Instead of basing medical care on a whim, it’s based on evidence. Research-based evidence could also have a role in how best to convey information to patients effectively in a time limited way. 

Do you agree with Trogen that physicians would be more effective if equipped with better communication tools, rather than just scientific knowledge? What do you think about her statement that “knowledge is important, but not always sufficient?” As a primary care physician, much of my day is spent helping patients brainstorm how they can remember to take their medications, what changes could be made in their lifestyle to add in some exercise or improve their diet, why they should consider a colonoscopy or cutting back on alcohol or get certain screening tests based on family history. I know I’ve honed some of my own communication skills over my years in practice, but I would welcome a way to reach each patient, if possible, in a more effective and proven way. 

Writing Prompt: Do you recall a physician using a metaphor to describe a treatment plan, disease process or other medical process? Was it helpful? Write about the experience. If you’re a medical provider, think of something you often counsel patients about. Try brainstorming metaphors or consider writing a complete fable on this topic. Alternatively, think about a doctor-patient interaction that hinged on very good (or very poor) communication. Describe the encounter and the benefit or consequences. Write for 10 minutes.

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