Narrative Medicine

Narrative Medicine Monday: Brain on Fire

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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, Writing

My Kind of People

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I’m currently in Boston at Harvard’s Writing, Publishing, and Social Media for Healthcare Professionals conference. I’ve learned so much from the speakers, agents and editors here but one of the biggest benefits has been the networking opportunities. I’m part of an online group for physician writer mothers (totally my people, I know!) and though I’ve interacted with many of them virtually, it’s been a true pleasure to get to know them in person. What an amazing group of creative women doing incredible work in medicine and writing.

As with so many conferences I’ve attended, I’m inspired to write more, submit more, fine tune my book proposal and my pitch. Most of all, I’m encouraged to finish my books-in-progress. Writing and publishing a book is a marathon endeavor. I am not a creature of patience or a natural extrovert, but this process is teaching me endurance, humility and boldness. If you’re in healthcare and a writer I highly recommend this annual conference for tips, tools and inspiration.

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Narrative Medicine

Narrative Medicine Monday: Grace and Forgiveness

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Oncologist Dr. Catriona McNeil writes about a severe adverse outcome her patient suffers in The Journal of Clinical Oncology’s “Grace and Forgiveness.”

Dr. McNeil treats her patient, Liz, who also happens to work in the same hospital, with a standard chemotherapy for breast cancer. When Liz suffers a rare but known possible complication from her chemotherapy, McNeil finds herself grappling with feelings of guilt, of responsibility. She initially wonders if she made a mistake, if there could be some other cause to her patient’s catastrophic decline: “The chemotherapy order had been checked and rechecked. Had I made a mistake? … She’d had nowhere near a cardio-toxic dose of chemotherapy. No, it couldn’t be that. Until eventually it could no longer be anything else.”

McNeil considers the early clinical studies of the chemotherapy she used, how those oncologists also might have “sat with a distraught family in a tiny room and had the same awful conversation. And yet how bland and unthreatening those little rows of text in the medical journals had seemed. How they’d sat so neatly in a small font near the bottom of the toxicity tables—cardiac death, 0.1% or thereabouts; just a handful of patients. Rare. Unlikely.”

This essay illustrates the limitations of medicine and the bias of human nature. It’s difficult to acknowledge we or our patients could suffer a detrimental complication, especially when it’s statistically rare. McNeil conveys the weight prescribing providers carry when such an event occurs. Although we all know, as patients and physicians, that there are no guarantees in medicine, it is jolting to experience what McNeil calls “the trauma of an adverse patient outcome.” Even though there “had been no malice or intent, no mistake or neglect,” McNeil still harbors guilt as she alone “had signed the chemotherapy order.”

Any treatment advised, from ibuprofen to chemotherapy, can have dire side effects. Learning to grapple with those consequences and continue to move forward with empathy for both self and the patient poses a great challenge to the medical profession.

Writing Prompt: As a patient, think of a time you’ve suffered an adverse outcome from a treatment prescribed by your physician. Even if you were well informed about the risks, benefits and alternatives, how did the experience affect you? Did it alter your opinion of your doctor or of medicine in general? If you’re a medical provider, write about a time you prescribed the best treatment available but your patient had a detrimental outcome. How did that affect you and your practice? Write for 10 minutes.

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Ramblings

Free Write Friday: Breakfast

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Growing up, sugary cereals were only allowed for special occasions in my family. If we were on vacation my parents would succumb to the pleas of their three children and buy an eight pack brick of miniature cereal boxes: Sugar Pops, Apple Jacks, Frosted Flakes. We’d line them up on the dining room table, barter and trade and bicker as siblings do. My favorite was Honey Smacks, neon cartoon frog jubilant on the front, ready to leap. I liked the caramel flavor, the bean-like shape of the kernels in my small mouth.

***

My mom would always wake with us, sit at the breakfast table no matter how early, clad in her cotton nightgown and cushioned slippers. The lone overhead light shone like a spotlight in our eat-in kitchen. I remember her stirring a pot of Cream of Wheat on the stove, my much older brother off at college, my younger brother still slumbering in his bed. I don’t remember talking much; we were both slow to articulate upon waking. The warmth of her presence, the hot cereal sweetened with a dollop of brown sugar, was the best kind of start to brave a new day.

***

In residency we’d all gather for morning sign-out to discuss the overnight events on each patient under our care. Those of us on call would grab breakfast as soon as the hospital cafeteria opened; if one was tending to a patient, writing an order, responding to a page, the other would collect their food for them. We all knew the preferences of each other, constant companions for 36 hour shifts, 3 years of working 80 hour weeks together. You get to know how a person takes their coffee, how they like their oatmeal. There were cheesy eggs, regular eggs, strips of bacon, big vats in steel containers heated under red lamps. I liked getting a plate of scrambled eggs with a scoop of white rice, a couple of soy sauce packets tucked in my scrub shirt pocket. I’d mix them all together as I joined my colleagues for pre-dawn sign-out, a makeshift comfort food after an exhaustive night of work.

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Narrative Medicine

Narrative Medicine Monday: GUTS

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I previously featured author Janet Buttenwieser’s essay, “The Colostomy Diaries,” on a Narrative Medicine Monday post. Today, I’m pleased to highlight her similarly humorous and heartfelt memoir, GUTS.

Buttenwieser writes with a comfortable familiarity, weaving candor into her story of misdiagnosis, treatment and loss. I felt like I was reading the words of a dear friend; Buttenwieser is authentic and relatable. She navigates the foreign and often perplexing world of medicine as a young patient, stricken with a debilitating illness. She finds herself getting regular CT scans and under the care of a surgical resident, contemplating operative measures: “I decided right then that I liked the resident better than my regular doctor. In my growing survey of medical professionals, I’d begun to notice a trend. The younger the doctor, the more he or she listened to me. They asked questions …”

I was particularly struck by a passage where Buttenwieser describes her overhearing a paramedic relay her emergency case to the hospital where the ambulance is transporting her to. He uses the common medical term “chief complaint.” She bristles at the phrasing, stating “I feel angry at the way we patients are portrayed by the medical establishment as whiny toddlers who need a nap. Patient complains of gunshot wound to the head. Patient complains of missing limb following leg amputation.” There is phrasing that becomes commonplace during medical training, traditional wording that is passed down in the name of congruity. To an outsider, though, I can appreciate how unfeeling much of this must seem. Medical-ese leaves much to be desired in the realm of patient-centeredness.

I was privileged to meet the local author briefly at a book signing and will attend a book club this week where she will also be in attendance. I admire her writing skills as well as her contribution to an important perspective – that of a young patient. GUTS has solidified its place among my favorite narrative medicine memoirs, including In Shock, When Breath Becomes Airand On Call.

Writing Prompt: Have you encountered a certain trend among medical professionals, as did Buttenwieser? Do you agree that younger medical providers are better listeners? As a self-proclaimed rule follower, Buttenwieser finds it difficult, especially early in her bout with disease, to advocate for herself or question her initial physician’s diagnosis and treatment plan. Have you faced a similar challenge in the medical world? Write for 10 minutes.

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Ramblings

Rhythm

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I’ve been out of step, out of commission the past few weeks. I was incredibly ill over Easter weekend, had to cancel family events and it took my body a week to recover. I also was preoccupied with taking the medical board exam this week, a once in a decade test to maintain my license. My usual pattern of writing and blogging fell out of rhythm for the first time in two years.

I’m hoping to refocus, regain some footing now that I have other distractions behind me. Writing is essential to my life, my own self-care and purpose. I’ve been thinking a lot about rhythms of life, what is nourishing and essential, how different stages can be taxing in familiar ways.

Each month this year I’ve focused on a different area of personal growth. April is dedicated to the Sabbath, that sacred space of rest. I’ve always struggled with the concept of Sabbath and today’s nonstop rush of a world feeds into my tendency of devotion to productivity, to my To Do List, to my ambitions. I’m reading Wayne Muller’s “Sabbath“, which is a call to incorporating a rhythm of rest.

This may seem contrary to what I just wrote, about needing to re-establish my focus on writing, on my rigid rhythms. But I don’t think they’re actually incongruous, this need for structure, this necessity of rest. I want to avoid being legalistic about my schedule, but I also find comfort in boundaries, in a steady rhythm. Life brings so much unexpected upheaval. I don’t think it’s disingenuous to find peace in a plan that provides structure, that carves out time for that which is nourishing, which is restful.

What are your thoughts on rest? What rhythms of life do you find helpful or limiting? I will continue to explore this idea of Sabbath, but also return to my rhythms of writing in the hope that I’ll find peace both in learning to rest and in work that brings me fulfillment.

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Ramblings

Free Write Friday: Study

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She lays out her highlighters, gathers her papers. She attended a review course with peers months ago, took notes from the lectures, sitting three quarters of the way back where she always can be found. She’s sorted the lecture slides, distilled the notes into neat documents organized by medical topic. She prepares to study.

The test only comes every ten years. She last took it at the end of her twenties, freshly graduated, freshly married. Studying was familiar then, she had no distractions. Now a decade later, three children and mid-career obligations provide frequent interruptions.

She sits in front of the computer screen in the early evening after tucking her eldest into bed, bleary-eyed from a full day’s work. She answers multiple choice question after multiple choice question, has to quit quizzing by 9 p.m. and crawl into bed.

She over-highlights her notes, as she always has. Neon yellow streaks her notebook so much that it doesn’t draw the eye to the critical as it should. She’s always been wary of leaving something out, letting a tidbit go, afraid she’ll miss it later on. She records even the most basic fact in black and white in case it escapes her overburdened mind. The result is too much retained, significance lost in overabundance. So much kept, she can’t tell what’s important anymore.

Prone to anxiety but gifted with compulsion, she never liked taking tests but survived the most examined profession. She sits for it again in two weeks, the boards. She’ll present her photo ID and settle into a straight backed chair, be issued her tiny whiteboard and dry erase marker. She’ll stare at a computer for six hours, interpret electrocardiograms and select the most appropriate treatment plan from the multiple choices.

Just after lunch her mind will become boggy. She’ll have to push through the examination fatigue, conjure the will to concentrate on each each vital sign, each lab result. She’ll muster renewed energy close to the end, sensing it near. She’ll collapse at completion, simultaneously buoyed by elation, as if she’s run a marathon, as if she’s climbed a mountain. And she has, in a way. She’s deposited all that information, stuffed into the recesses of her thoroughly educated synapses into the Prometric receptacle. She’ll be done. At least for another ten years.

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