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 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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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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Narrative Medicine Monday: The Train

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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.

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Narrative Medicine Monday: Creating a Clearing

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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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Narrative Medicine Monday: What I Would Give

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Physician and poet Rafael Campo has published several collections of poetry and prose. In his poem “What I Would Give,” Campo outlines the “usual prescription” given by physician to patient: “reassurance that their lungs sound fine” or “that the mole they’ve noticed change is not a melanoma…” He instead would like to offer them “my astonishment at sudden rainfall like the whole world weeping” and “the joy I felt while staring in your eyes as you learned epidemiology.”

Campo’s poem makes me think about all that we give to patients with each interaction, each hospitalization, over decades of caring for a patient and their family. Should we reorient the standard prescription for cure? As a patient, do you get reassurance from your medical provider? Comfort? What would be the best prescription?

Writing Prompt: If you could give anything to your patients, what would you give? As a patient, what do you expect to receive from your physician? What gives you comfort? Write for 10 minutes.

You can read more about Rafael Campo and his thoughts on the intersection of poetry and medicine in this interview with Cortney Davis, whose work I’ve featured on a previous Narrative Medicine Monday.

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Narrative Medicine Monday: Out of the Straightjacket

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In recent years the importance of physician burnout, depression and the high suicide rate among physicians has become more visible. The New York Times article “Taking Care of the Physician” notes that physicians are “approximately twice the relative risk of suicide compared to people in other professions” and aren’t adequately trained to deal with many of the stressors that being a medical provider entail: “how to deal with conflict, how to deal with negotiation, how to deal with the distress of patients”. We learn the science of medicine but don’t receive enough instruction on the skills that can lead to resiliency in an emotionally grueling profession.

Dr. Michael Weinstein bravely shares his own story of severe depression, subsequent treatment and the struggle he experienced as a surgeon who desperately needed help regarding his mental illness. Weinstein’s essay “Out of the Straitjacket” in the New England Journal of Medicine reveals how he became “profoundly depressed, delirious, and hopeless. He’d lost faith in treatment and in reasons to live.” He describes the brutal hours and culture of residency training and how he went on to become a trauma surgeon, shouldering the emotional toll that intense work can take: “We often make decisions in the face of uncertainty that deeply affect our patients’ lives. When things went wrong, I frequently blamed myself.” Weinstein illustrates the failure in the medical culture to address the frequency of burnout and depression in our profession: “I didn’t know how to talk to my coresidents or faculty about medical mistakes and the accompanying self-flagellation.” He “felt trapped in [his] work and worried that [he] would expose [his] shortcomings if [he] sought a leave or disclosed [his] feelings.” How can we change the stigma associated with such a prevalent scourge on our profession, on so many who suffer from mental illness in this world?

Recent studies on physician wellness point to the fact that “it’s more effective to make changes at the level of the institution, rather than just telling the doctors to shape up in the wellness department.” So many physicians “enter medical school deeply committed to the field, they come with the desire to be empathic and compassionate, if we just create a system that nurtures what they come with then we will have less burnout and higher quality care.” How can we best change our institutions, our culture, to promote wellness in those who care for our health?

Writing Prompt: Do you or a colleague suffer from burnout or depression? How has your institution helped address this issue? How has it failed in addressing this issue? As a patient, what are your thoughts about Dr. McClafferty’s statement in the New York Times article: “If you’re my physician, I want you to be in good shape mentally, physically and emotionally, so you can be really successful at helping me”? If you’ve personally suffered from depression, what stigma did you experience? What was most helpful, from individuals or from your workplace, for recovery? Write for 10 minutes.

If you are suffering from depression or burnout, there is help:

For Physicians: AMA’s Steps Forward

For Patients and Physicians: National Suicide Prevention Lifeline

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Narrative Medicine Monday: Standardized Patient

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Artist Kerry Tribe’s latest installment at the San Francisco Museum of Modern Art, Standardized Patient, brought back memories for me of medical school. The article on Tribe’s work by Hyperallergenic describes her as “interested in memory, language and awkward connections.” The relationship between patients and doctors-in-training certainly consists of awkward connections. I remember the standardized patients we worked with to learn how to take a basic medical history, how to perform a physical exam, even how to do pelvic and rectal exams without as much fumbling and hesitation inherent in such a personal exam. All the standardized patients I encountered were professional and helpful, giving valuable feedback and helping us prepare for a new component of the medical licensing exam: that of a standardized patient interaction. For this portion of the exam we flew down to California (the closest location for those of us training in the Pacific Northwest) and stood outside nondescript doors in our short white coats, much like the medical students in the last photo of this piece. I remember feeling terrified at what this patient, this actor, might judge me on. Was I too friendly? Not personable enough? Did I make enough eye contact? Ask the right questions? Perform the right physical exam? Give the correct reassurance and explanation?

Tribe’s installment “captures the atmosphere of a hospital: that draggy kind of feeling, as though everything is tired and washed out, as if you are waiting for something.” She shows the uncertainty of physicians-in-training: “We can see the tentativeness of the prospective doctor, as they question one SP about how her boyfriend has treated her and see how the doctor tries to comfort her.” I like that Tribe captures the nuances of medical training, that “[w]atching this display of effort creates empathy for the doctors as well as the actors. Seeing the feelings of both — impatience, kindness, concern — flash across their faces, you almost forget they’re acting….”

Writing Prompt: If you’re a physician, recall a particular interaction with a standardized patient during your training. What did it feel like? What did you learn? As a patient, were you aware that your physician trained with actors as patients? Does this seem strange or is it encouraging to you? What kind of focused training on communication or empathy might be helpful for your doctor today? Write for 10 minutes.

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Narrative Medicine Monday: Of Mothers and Monkeys

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Caitlin Kuehn’s essay “Of Mothers and Monkeys” draws parallels between her research work with macaque monkeys and her mother receiving treatment for breast cancer in the same hospital. As her mother starts chemotherapy, Kuehn “rotate[s] between the animal ward and the human ward.”

Kuehn wrestles with the ethical ambiguity faced in animal research. Thinking of her own mother’s reaction to chemotherapy, she darts off to her work in the research lab, wondering “what animal first shared with my mother that sudden fear of a throat closing in… I realize that I—as a student, with very little power but a whole lot of responsibility—am complicit in a moral choice I have still not taken the time to make. Some days it is hard to remind myself that medical research has a purpose. Some days it is as clear as cancer. Some days I just do not know.”

When Kuehn’s mother needs injections to help boost her immune system after suffering from a serious sepsis infection, though Kuehn “could do a subcutaneous injection in the dark,” she becomes “shatteringly nervous” whenever she has to give her mother injections; the familiar activity takes on a different tone.

Kuehn’s mother begins to rely on her to answer medical questions, but Kuehn’s scientific expertise is limited to “what I have learned in my undergraduate science classes, or here at the lab. All of it applicable only to non-human mammals, or else too theoretical to be of any use for as intimate a need as this. I have no good answers.” I was struck by the fact that often, even for those of us who have extensive medical knowledge and training, we still lack “good answers” to those questions posed by suffering loved ones.

Kuehn has a strong reaction when her mother declares that she’s fighting her cancer for Kuehn and her sister: “She’s pushed her will to persevere off onto my sister and me. It’s too much pressure to be somebody else’s reason.” Have you ever been somebody else’s reason for fighting for survival? Did you have the same reaction as Kuehn to that kind of pressure?

Writing Prompt: At one point Kuehn responds to Domingo’s convulsions in the same comforting way she does when her own mother’s throat begins to swell during her chemotherapy: You’re going to be okay.  When a patient or loved one has been faced with a particularly challenging moment of illness, is there a mantra you’ve repeated to them? To yourself? Did it help? Write about the situation. Alternatively, reflect on Kuehn’s statement that “death is a condition of life.” Write for 10 minutes.

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Narrative Medicine Monday: What Patients Say, What Doctors Hear

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Dr. Danielle Ofri’s latest book, What Patients Say, What Doctors Hear is a call to re-examine the way doctors and patients communicate with each other. Through fascinating patient examples and directed research, Ofri illuminates the pitfalls in the current medical system that lead to miscommunication and, ultimately, worse heath outcomes.

I was particularly struck by Ofri’s call for physicians to become better listeners, and thus “co-narrators” of a patient’s story. This term was coined by researcher Janet Bavelas, whose study shows that how physicians listen to a patient’s story in fact contributes to the shaping of that narrative. Ofri asserts that “medicine is still fundamentally a human endeavor,” that one of the most significant ways we can advance health care is by improving one of our most basic tools: communication.

I’m thrilled Dr. Ofri will be speaking to my medical group this week and I’ll be able to meet her in person. Dr. Ofri has written many books and essays important to the world of narrative medicine and is the Editor-in-Chief of the Bellevue Literary Review.

Writing Prompt: One chapter in Ofri’s book outlines a “Chief Listening Officer” who was hired by a hospital to listen to patients and translate their needs back to the hospital so they could improve care. Ofri notes the value of this, that “being listened to so attentively is a remarkably energizing experience. It makes you eager to continue engaging.” Have you ever had an interaction with a medical provider who listened to you and your story in this way? How did it make you feel? Did that experience benefit your health in any way? Write for 10 minutes.

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