Narrative Medicine Monday: What Patients Say, What Doctors Hear

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

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

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

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

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:

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: A View from the Edge

Dr. Rana Awdish is a critical care physician turned advocate for training in compassionate care following her incredible near death experience in her own hospital. Her essay “A View from the Edge” in the New England Journal of Medicine provides an overview of her 2008 experience as a critically ill patient cared for by her colleagues.

In her book “In Shock,” out this October by St. Martin’s Press, she outlines her harrowing near-death illness and recovery. I’m eager to read Awdish’s book and hear more about how her experience led to advocacy for “compassionate, coordinated care.” In her NEJM essay she describes how “small things would gut me. Receiving a bill for the attempted resuscitation of the baby, for example…. A trivial oversight, by a department ostensibly not involved in patient care, had the potential to bring me to my knees.” After recovering, Awdish channels her grueling patient experience into a drive to transform the way we receive and provide medical care. She contends “we need to reflect on times when our care has deviated from what we intended — when we haven’t been who we hoped to be. We have to be transparent and allow the failure to reshape us, to help us reset our intention and mold our future selves.”

Writing Prompt: Have you noted an erosion of empathy among medical providers? If so, think of a specific example and write about how you felt as the patient. If you’re a medical provider, have you ever been cared for by colleagues at your own hospital? What was it like to be on the “other side,” as a patient? Did you come away from the experience with new knowledge and empathy that you then incorporated into your own practice? Write for 10 minutes. 

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Narrative Medicine Monday: Wernicke-Korsakoff

Poet and medical student Sarah Shirley describes an evolving interaction with a patient in “Wernicke-Korsakoff.” The patient initially finds complaint with everything: “the too soft too hard bed, the lunch that came with only one spoon though clearly two spoons were required.” Shirley struggles to connect with the disgruntled patient, who clearly wants nothing to do with her as an intrusive medical student.

Throughout my medical training and career I’ve encountered patients, like in “Wernicke-Korsakoff,” where “everything is thrown back.” They were angry at their disease, angry at the medical providers, angry at the system, angry at the world. At times, I’ve been one of those patients myself. There’s no doubt health and illness affect our mood. Many of those who are suffering build a shell to cocoon themselves off from the damaging world. Often they are rightfully skeptical of a medical system that has many failings. Shirley finally breaks through to her patient in the end, after searching for the right connecting point. 

Writing Prompt: Think about a time you were sick. How did being ill affect your mood and interactions with others? Were you inclined to cling to others for support or did you find yourself “raging against the world?” Perhaps you experienced both. What about a time when you were caring for someone who was sick? Did they allow you to connect with them right away or was it a struggle? Write for 10 minutes.

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Narrative Medicine Monday: #3 In Line

Eliza Callard imagines a lung transplant in her vivid poem “#3 In Line.” She begins by describing the surgeon’s actions lifting “the sodden lungs out,” but then pauses to wonder about the patient: “Where will she be for all this?” Callard touches on the desperation following any transplant to get the foreign object to “stay, stay,” to trick a body into accepting an imported organ as one of its own. 

Writing Prompt: Imagine an organ transplant: liver, lung, kidney. Write about the transplant from several different perspectives: that of the patient, her body, the transplant surgeon, the patient who donated the organ, even the organ itself. Write for 10 minutes. 

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Narrative Medicine Monday: Bedside Rounds

John L. Wright’s poem, “Bedside Rounds,” speaks to the apprentice-like training of physicians. It is a passing on of skills from the experienced to the inexperienced, from the knowledgeable to the clinically naive. Most medical students, unless they have a background in another medical field, have little to no real experience in the hands-on component of medicine. They take years of study – biology, anatomy, pathophysiology – and translate that book smarts into skills of diagnostic touch, suturing skin, prescribing treatment. 

One method of transforming head knowledge to a practical skill set is through bedside rounds: a gaggle of medical students and resident and fellow physicians (still in training) following after an experienced attending physician. Each morning this group travels from bedside to bedside, discussing the patient’s disease, the patient’s prognosis, the patient’s progress, the patient’s treatment plan. In recent years, medical schools have worked on making this process more inclusive of the patient who, after all, is the subject of the discussion. 

Wright’s poem touches on the experience of that patient, ill and incapacitated, being talked over in a cryptic language, determinations being made about the status and plan while the patient may still be steeped in a cloud of confusion. 

Wright finds himself in a comparable situation when his landscape architect brings her intern along with her one day. As this professional passes on her skills to her protégée, discussing his yard in detail, Wright begins to feel something he hadn’t expected: “I begin to resent them—the little games they play.”

Writing Prompt: Think of a time you’ve experienced bedside rounds as a physician, as a patient or while visiting someone in the hospital. If you were the patient, how did you feel when the medical team discussed your case in front of you? Did they include you in the discussion or explain what they talked about? If you’re a medical provider, choose a memorable bedside rounding experience: running rounds for the first time, being a brand new medical student, noticing something significant with the patient’s demeanor while their case was being discussed. Write for 10 minutes.

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