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: 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: 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: 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: 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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