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: Going Solo

Nurse and writer Amanda Anderson describes the final moments of caring for a patient in the ICU in “Going Solo“.

Anderson opens the piece noting that she decides to scrub the patient’s teeth clean. Why do you think she’s determined to complete this simple act?

The author comments that this passing feels different than others because she doesn’t also have the patient’s family to nurse through the process. Her actions are per protocol, “governed only by a set of instructions:
1.  Administer pain dose once, prior to extubation.
2.  Extubate patient.
3.  Administer pain dose every three minutes for respiratory rate greater than twenty,
or obvious signs of pain, as needed.
4.  Notify house staff at time of asystole.”

How do you feel when you read through the protocol that Anderson follows? How do you think she feels and how does she convey that through her writing?

I appreciate Anderson’s candidness in immersing us in her thought process. She plays jazz for him, then realizes, what if he hates jazz? As medical providers, we only get a snippet of a patient’s life. If you’re a medical provider, have you ever wondered about a specific patient’s life outside of the hospital? How could that information inform their care? As a patient, what do you wish your medical providers knew about who you are?

Writing prompt: As a medical provider, think about a protocol you follow, a procedure or list of instructions you adhere to in a certain situation to provide care. List the steps. Now consider an unwritten protocol, such as a nurse in caring for family members throughout their loved one’s death in an ICU. List the steps. How do they compare? Alternatively, think about an encounter you’ve had in the medical world: a ten minute doctor’s office visit, visiting a friend who is hospitalized, getting or giving an immunization. Imagine the broader life of the person who was giving or getting that medical care. Consider their life narrative. Write for 10 minutes.

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Narrative Medicine Monday: The Heroism of Incremental Care

As a primary care physician myself, I found Atul Gawande’s new article “The Heroism of Incremental Care” encouraging and empowering. The New Yorker piece highlights the importance of longitudinal care between a patient and their primary care provider.

When Gawande visits a headache clinic in Massachusetts, the physician there tells him she starts by listening to the patient: “You ask them to tell the story of their headache and then you stay very quiet for a long time.” What have you found is the most important component of a physician-patient encounter? If you are a provider, do you feel you’re always able to listen to the patient’s full story? If you’re a patient, do you feel listened to when you see your doctor?

When Gawande visits the primary care clinic in Boston, he’s told the reason primary care is important to bettering patient health is due to the “relationship”. Do you agree? Have you had a relationship with a primary care provider that has invariably improved your health over the years? If you are a primary care provider, has this been your experience with patients?

Writing Prompt: Gawande writes of the clinic he visits: “At any given moment, someone there might be suturing a laceration, lancing an abscess, aspirating a gouty joint, biopsying a suspicious skin lesion, managing a bipolar-disorder crisis, assessing a geriatric patient who had taken a fall, placing an intrauterine contraceptive device, or stabilizing a patient who’d had an asthma attack.” Think about the last time you saw your primary care provider. Write about that visit in the present tense, then project a decade or two into the future. Imagine how that visit, and many others like it, might have made a difference to your health decades from now. Write for 10 minutes.

 

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Narrative Medicine Monday: You Will Feel A Pinch

With a title like “You Will Feel A Pinch“, I couldn’t help but read Marylyn Grigas’ poem in the Bellevue Literary Review. Whenever I’m doing an injection with a numbing medication for a procedure, I say exactly this: “You will feel a pinch, then a burn.” This is just how she begins.

There are so many phrases that I use automatically and repetitively with patients on a daily basis. Leaving the room for the patient to change for a physical exam, I inform: “The gown opens in the back, the paper drape unfolds over your legs.” Performing a Pap smear and gynecologic exam, I explain I’m going to “use my other hand to feel your uterus and ovaries and make sure I don’t feel any masses or anything abnormal.” I listen to the lungs on the back and ask the patient to “take deep breaths through your mouth”, then as I move to auscultate the lub-dub of the heart on the chest I ask them to “breathe normally.” I once had a patient laugh and reply, “What does that mean?” These phrases come out of our mouths, rote habit, without thought as to what a patient, who might be hearing those words for the first time, might perceive. 

After much trial and error you discover what tends to work to communicate with patients in a way they can understand. You begin to anticipate the questions they’ll ask, such as if the gown opens in the back or the front, and preempt with answers. But I think over time, over years, it becomes such second nature that the words fall out without pausing to think about the meaning.

Two years ago I had a skin lesion on my back that was bothering me and I asked my doctor to “burn” it off with liquid nitrogen. This type of so-called cryotherapy is a treatment I perform on others regularly. I always warn “this may sting” and have had incredibly varied responses, ranging from people barely flinching to  crying out in pain. When my own turn came I was acutely surprised at how painful it was, much more than just a “sting”, both during the application and for several days after. I developed a new empathy for the recipients of my cryotherapy treatment going forward. I shudder when I think of all the coaching phrases confidently uttered to my patients in labor a decade before I experienced labor pains myself. 

Why do you think Grigas opens her poem with this oft used warning? What does this phrase seem to make her think of? How does her poem evolve and what do you think it’s about?

Writing Prompt: Think about something you say regularly to patients, almost automatically. Unpack the phrase. Imagine yourself in the patient’s position hearing this for the first time and write from their perspective. What other things might come to mind when a patient hears this phrase? If you’re not a medical professional, can you think of sentences you’ve heard from doctors or nurses that were confusing or funny or easily misunderstood? Write about this for 10 minutes. 

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