narrative medicine – Page 8

(Re)Published: Dust

June 1, 2018 No Comments

“…where are the moments of joy, of beauty, of grace within this doomsday path humans are on? From where or how do we come up with reasons that make it worthwhile to continue living? To rush out of our beds to greet the day? To smile? To laugh? Well, for me, these moments would occur through the positive interactions made possible by love and respect for other people, creatures and the environment…” – Eileen R. Tabios

Thrilled to announce that my collection of vignettes about my work in Kenya, Dust, will be part of an anthology published by Paloma Press this summer. Dust originally appeared in the Spring 2016 issue of Intima. The Paloma Press editor contacted me to inquire about including it in their upcoming book, Humanity. I’m honored to be among professors, poets, ethnographers and others who have contributed to this important work. More to come when the anthology launches this summer!

Narrative Medicine

Narrative Medicine Monday: The Burnout Crisis in American Medicine

May 28, 2018 No Comments

A recent article in The Atlantic by writer and resident physician Rena Xu highlights the toll rigid regulations and decreasing autonomy takes on medical professionals. In “The Burnout Crisis in American Medicine,” Xu illustrates the causes of burnout and the consequences of a system that makes it challenging for doctors to do what they were trained to do – care for patients.

In the article, Xu tells the story of a patient admitted to the hospital for cardiac issues. She is then found to have a kidney problem that is in need of a surgical procedure. Unfortunately, the anesthesiologist who tries to book the the surgery finds that the computer system won’t let him schedule it because the patient already had a cardiac study scheduled for the following morning. A computer system issue took hours of Xu’s time, all because “doctors weren’t allowed to change the schedule.”

Xu expresses understandable frustration that her “attention had been consumed by challenges of coordination rather than actual patient care.” I’m sure every medical professional can relate. In today’s healthcare environment, much of the work we do in medicine is clerical and administrative. Xu notes that “doctors become doctors because they want to take care of patients.” Instead, many of our “challenges relate to the operations of medicine–managing a growing number of patients, coordinating care across multiple providers, documenting it all.”

I liked Xu’s analogy of a chef attempting to serve several roles in a restaurant without compromising the quality of the meals. The restaurant owners then ask her to document everything she cooks. There are a bewildering array of options for each ingredient and “she ends up spending more time documenting her preparation than actually preparing the dish. And all the while, the owners are pressuring her to produce more and produce faster.” Any physician who has worked with the ICD-10 coding system can relate.

Xu notes the looming physician shortage in coming decades as the population ages and a large swath of physicians retire: a crisis in its own right. The only remedy is to improve “the workflow of medicine so that physicians are empowered to do their job well and derive satisfaction from it.”

Patients might not realize that “burned-out doctors are more likely to make medical errors, work less efficiently, and refer their patients to other providers, increasing the overall complexity (and with it, the cost) of care.” As patients, we should be fighting for our healthcare organizations to promote a culture and systems of wellness among medical providers. The care we receive depends on it.

Writing Prompt: If you’re a physician, what is greatest stressor in your daily practice? Have you had to make “creative” work-arounds, like the anesthesiologist in Xu’s article, just to do the right thing for your patient? If you’re a patient, have you considered how your physician’s well-being might affect their ability to care for you? What systemic barriers are in the way of addressing this crisis? Write for 10 minutes.

Narrative Medicine

Narrative Medicine Monday: Mom at Bedside, Appears Calm

May 20, 2018 No Comments

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.

Narrative Medicine

Narrative Medicine Monday: The Game of Catch

May 7, 2018 No Comments

Noah Stetzer’s poem “The Game of Catch” is featured in the current issue of the Bellev ue Literary Review as well on Poetry Daily. Stetzer begins by describing an “idyllic” game of catch, then expands his narrative, including idioms and phrases the word catch might conjure up.

As the poem progresses it becomes more intimate, more ominous, a recounting of Stetzer’s own story of “catching” from another: “in my voice, catch my breath, no-it’s when small blue flame/ignites kindling; the kind of catch that’s alone in itself the thing/one avoids…” Stetzer guides the reader through his own experience of catching an illness that, though “unexpected,” also seemed “inevitable” and ultimately leaves us with the idea that this is a game we all play.

Writing Prompt: Take another word commonly used in medicine: treat, contract, mass, inject. Think of all the other ways this word is used, in idioms or otherwise. What is surprising or illustrative about the words we use in illness and health? Alternatively, think of a time you “caught” a disease from another person. Maybe it was a stranger or someone you knew intimately. Did you feel, as Stetzer did, that it was “unexpected” but also “inevitable?” Write for 10 minutes.

Narrative Medicine

Narrative Medicine Monday: Brain on Fire

April 30, 2018 No Comments

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.

Narrative Medicine, Writing

My Kind of People

April 27, 2018 No Comments

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.

Narrative Medicine

Narrative Medicine Monday: Grace and Forgiveness

April 22, 2018 No Comments

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.

Narrative Medicine

Narrative Medicine Monday: GUTS

April 16, 2018 No Comments

I previously featured author Janet Buttenwie ser’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.

Narrative Medicine

Narrative Medicine Monday: The Train

March 26, 2018 No Comments

I featured one of Dr. Thomas Gibbs’ other essays on my very first Narrative Medicine Monday post in 2016. Today’s piece, found in the excellent flash essay journal Brevity, highlights another experience altogether. Dr. Gibbs is an obstetrician and therefore encounters dramatic medical emergencies that can put two lives at risk simultaneously. This was the case in “The Train,” when Gibbs is paged in the early morning hours about a bleeding pregnant patient who works in his office. Gibbs tells her husband to drive the patient himself to the hospital as he knows the urgency of the situation and that the local EMTs would take longer to get her there. He treats the patient as she arrives and disaster is averted. When he goes to inform the patient’s husband in the waiting room, he finds the husband shaken. In just getting to the hospital, all of them were in danger.

This piece made me think of all the advice we give patients, all the instructions we get from well-meaning physicians. Sometimes this advice has unintended consequences, either because patients misinterpret what was said or the instructions weren’t communicated effectively or because of events entirely out of anyone’s control. When you read the final lines of this essay, what were your first thoughts about the situation?

Writing Prompt: Have you given or gotten advice from a physician that, when followed, caused unforeseen consequences? Consider what happened or imagine what could have happened. As a physician, how did this change your medical practice or, as a patient, your relationship with that physician? Write for 10 minutes.

Narrative Medicine

Narrative Medicine Monday: Creating a Clearing

March 19, 2018 No Comments

In “Creating a Clearing,” storyteller Lance Weiler interviews the originator of Narrative Medicine, Columbia University’s Rita Charon. Charon describes how she ended up in medicine and primary care and the origins of the field of Narrative Medicine. She felt she was missing something as a physician from her formal medical training at Harvard. So instead she sought out the English Department: “I figured they were the ones on campus who knew something about listening to stories…” Her time there led to a PhD and, in her words, it taught her “how to be a doctor.”

Charon points out that we are all patients. What do you think of her idea that “we do not have to divide ourselves into mind on one side and body on the other or body on one side and self or personhood on the other, but instead we are all mortals inextricably bound to our bodies, our health, our frailties, our eventual mortality. This is how it is within that element that we don’t become ourselves, but [we] are ourselves”? Do you feel that the medical system tends to separate our bodies from our minds, from our personhood?

Charon explains how Narrative Medicine has grown over the years and now attracts all kinds of people in fields of health care, art, history and beyond. She states that the field of Narrative Medicine has “created a clearing,” a safe space for patients and clinicians and artists to “show people how to listen with great attention and respect.”

Charon describes how we’re traditionally trained as physicians to address a patient’s problem. Western Medicine is a disease model, focused on diagnosing, preventing or treating a problem. Charon takes a different approach. She first listens, focusing on what is important to the patient. I like how Charon begins: “I will be your doctor. I need to know a lot about your body, your health, your life. Tell me what you think I should know about your situation.”

She notes that both sides suffer from the typical patient-physician encounter: “[patients] come in armed with their list of questions that they’ve written down so as not to forget any in their precious twelve minutes, which is all they’re allotted. The clinician, on his or her side, is already looking at the wristwatch aware that there’s another three people in the waiting room waiting for what’s going to amount to the same brusk, impersonal, divided attention. So nobody’s getting what they want or need or desire or can benefit from.” Does this sound familiar to you? Are you hopeful, as is Charon, that if patients and clinicians lead on medical reform we can find a better way? What would that look like?

Writing Prompt: What skills do you find most helpful to listen to another person’s story? What would it be like as a patient to have a doctor ask you: “Tell me what you think I should know about your situation”? How would that question change the conversation? Think about what aspect of your training was most pivotal to teaching you how to be a doctor/nurse/physical therapist, etc. Are you surprised that for Charon it was her studies in English? Write for 10 minutes.

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