Narrative Medicine Monday: Mom at Bedside, Appears Calm

I recently attended Harvard’s Writing, Publishing and Social Media for Healthcare Professionals conference and wrote about how networking and finding “my tribe” was a meaningful part of the conference. Case in point: a friend I met there recalled my interest in narrative medicine when she went to a talk by Dr. Suzanne Koven, the Writer in Residence at Massachusetts General Hospital. Dr. Koven is an internist and writer and has spearheaded the innovative Literature & Medicine program at MGH. My friend initiated a virtual introduction and Dr. Koven kindly agreed to speak with me about her successful program at MGH.

I’m inspired by her work in bringing narrative medicine to front-line medical providers. Today I’m featuring a New England Journal of Medicine piece she wrote from a very personal experience titled “Mom at Bedside, Appears Calm.”

Koven opens the essay with the things she carries “everywhere we go… two plastic syringes, each preloaded with 5 mg of liquid Valium….” She describes how they treat her son at “the first sign of blinking or twitching,” and that “[w]hen he relaxes, so do we.”

Koven is a physician, with all of the benefits and pitfalls that entails, navigating the tumultuous waters of a loved one suffering an illness that is particularly unpredictable and unnerving, especially when it affects a child. Her son continues to seize, still without an identifiable cause, taking “40 pills a day, crushed, on spoons of Breyers cookies-and-cream ice cream. Still he blinks and shakes, shakes and drops.”

With subsequent admissions to the hospital, Koven finds that she grows “more at ease” with the other parents of ill children and that she “clings to the nurses, Jen and Sarah and Kristen and ‘the other Jen,’ as we call her.” She glances at her son’s chart one night and it reads: “Mom at bedside. Appears calm.”

Though her son is eventually diagnosed and treated effectively, grows into adulthood and no longer suffers seizures, this period of unpredictable anxiety still haunts her: “occasionally my terror will snap to life again…. A siren sounds…. I still stop to see which way the ambulance is heading.”

Writing Prompt: Nowadays much of the medical record, including a physician’s progress note, is available right away to the patient via an online portal. Have you read a phrase or comment in your medical record that gave you pause, caused reflection? Did the comment align with how you felt in that moment, how you were perceived by the physician or nurse? If you’re a doctor, how would you answer the question Koven received: “Is it easier or hard to have a sick child when [you’re a] doctor?” Write for 10 minutes.

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Narrative Medicine Monday: Brain on Fire

Susannah Cahalan’s gripping book Brain on Firerecounts her sudden descent into psychosis and her parents’ frantic search for the cause. (Fair warning that this post contains spoilers to this real-life medical mystery.) Cahalan, a successful young New York City journalist, notes small changes at first: mild numbness, forgetfulness, nagging insecurities.

After Cahalan suffers an overt seizure, she is further evaluated by a top neurologist. He is convinced, after her MRI, exam and blood work all come back normal, that her symptoms are due to alcohol withdrawal, despite no history of heavy alcohol or illicit drug use.

I was struck by the glaring assumptions made by her physician; the details of her narrative were lost on him and the opportunity for detecting her rare diagnosis was missed. Cahalan later in the book asserts the misdiagnosis was a “by-product of a defective system that forces neurologists to spend five minutes with X number of patients a day to maintain their bottom line. It’s a bad system. Dr. Bailey is not the exception to the rule. He is the rule.”

I couldn’t agree more with Cahalan. Our system as it currently stands requires physicians to see more patients in less time, respond to more emails, make more phone calls and review more lab results, often at the end of a nonstop 10 hour day. It’s no wonder details of a patient’s narrative are missed. There’s no space to think deeply about a case, delve into the specific details that may provide a vital clue.

As Cahalan’s mental fitness deteriorates and her paranoia heightens, her mother insists she be admitted to the hospital and her neurologist acquiesces, finding a bed with 24-hour EEG monitoring at New York University Langone Medical Center.

Cahalan doesn’t retain many memories of the month she was hospitalized but does piece them together for the reader, using video obtained while being monitored for seizure activity, hospital notes and the recollections of her family and friends. Through these she paints heartbreaking snapshots of a young vibrant woman’s loss of function and reality.

Cahalan eventually comes under the care of a physician who finds time to listen to her story, every detail from the beginning. His diligence connects her to the proper clinician and results in her correct diagnosis and treatment. Cahalan’s account made me think of Dr. Danielle Ofri’s book What Patients Say, What Doctors Hear. The details of her story were so imperative to discerning, even suspecting, the correct diagnosis. Hers is a cautionary tale that reiterates the need for system reform if we want our doctors to have the time to put their extensive training to use and get it right.

Writing Prompt: After Cahalan recovers, she notes that she has difficulty distinguishing “fact from fiction.” She muses on memories lost and formed and struggles with the fear that she could, at any time, relapse. The experience causes her to reframe the brain as vulnerable. Do you think of the brain as fragile? Why or why not? Do you agree with Cahalan that a primary defect in the medical system is one that forces providers to see so many patients to “maintain their bottom line”? Think of a time this affected you as a patient. If you’re a provider, think of a time a diagnosis was delayed or missed because of systemic pressures resulting in a missed piece of a patient’s narrative. 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: 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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