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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