Narrative Medicine

Narrative Medicine Monday: Curiosity and What Equality Really Means

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Atul Gawande’s recent commencement speech at U.C.L.A. Medical School, published in The New Yorker, begins with a story. He describes an Emergency Room encounter with a prisoner who had slit his own wrist and swallowed a razor blade. Gawande found himself caring for this person who had alienated himself from many others, who experienced many preconceived expectations, given his status, as well.

Gawande warns the graduates that “wherever you go from here, and whatever you do, you will be tested. And the test will be about your ability to hold onto your principles. The foundational principle of medicine, going back centuries, is that all lives are of equal worth.”

He asserts that there is a gap in the care that people receive, whether that disconnect be due to “lack of money, lack of connections, background, darker skin pigment, or additional X chromosome.” Have you noticed this in your own medical practice, in your own life? How did this injustice make you feel?

Do you agree with Gawande that, as medical professionals, we have a “broad vantage” of this issue? Do you also agree that “[w]e all occupy our own bubbles?” How have you seen this manifested in individuals and society as a whole?

Gawande argues that we should regard all people as having “a common core of humanity.” In order to put ourselves in others’ shoes, we need to have a certain curiosity, as Gawande does about his prisoner patient. Despite the way the patient threatens his chief resident, Gawande engages with the patient. He learns that “[i]n medicine, you see people who are troublesome in every way: the complainer, the person with the unfriendly tone, the unwitting bigot, the guy who, as they say, makes ‘poor life choices.’ People can be untrustworthy, even scary… But you will also see lots of people whom you might have written off prove generous, caring, resourceful, brilliant. You don’t have to like or trust everyone to believe their lives are worth preserving.”

In my ten years in practice, I have certainly found this to be true. I agree that, above all, remaining curious about others is the key to understanding, the “beginning of empathy.” As medical professionals, we are “given trust to see human beings at their most vulnerable and serve them.” That trust is sacred, should never be forgotten and should inform our every attempt to serve “all as equals” and cultivate “openness to people’s humanity.”

Writing Prompt: We all train, and many of us work, in hospitals. Gawande notes that hospitals “are one of the very few places left where you encounter the whole span of society.” Think of two encounters you’ve had in a hospital with people of backgrounds from different ends of a spectrum. Write about your interactions with each of them. Alternatively, think about what gives you status, or lack thereof, in society. How have you been treated by medical professionals? Do you think your experience would be different if you were a C.E.O. or a cabbie? Why or why not? Write for 10 minutes.

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Narrative Medicine Monday: The Burnout Crisis in American Medicine

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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.

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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: In Shock

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Although I’ve never met her, author and critical care physician Rana Awdish on some level feels familiar. Not only are we both part of a supportive online group of physician-writers, but I just finished reading her wrenching memoir, “In Shock: My Journey from Death to Recovery and the Redemptive Power of Hope.” Awdish’s gripping account of her near-death experience, subsequent hospitalization in her own ICU and revelations about the shortcomings in both support for and education of medical providers in the realm of empathy are illuminating. Her book is infused with challenge and hope and a call to transform the way we train physicians and care for patients.

Awdish is thrust from the world of providing medicine into that of receiving it – a patient under her own colleagues’ care. The contrast of these positions of power and vulnerability are striking and Awdish describes the jarring experience and her own enlightenment as she pivots between these two roles. She shares with the reader her revelations regarding how we provide medical care to those in crisis and inspires us to find a better way.

I was particularly convicted by Awdish’s insight into how medical training encourages physicians to suppress many of our emotions. She traces this ideal back to the father of modern medicine, Sir William Osler, who encouraged “‘aequanimitas.’ Osler regarded this trait as the premier quality of a physician. It represented an imperturbability that was described as manifesting in ‘coolness and presence of mind under all circumstances, calmness amid storm, clearness of judgment in moments of grave peril.'”

Awdish asserts that as physicians “we aren’t trained to see our patients. We are trained to see pathology. We are taught to forage with scalpels and forceps for an elusive diagnosis buried within obfuscating tissues. We excavate alongside our mentors in delicate, deliberate layers, test by test, attempting to unearth disease. The true relationship is forged between the doctor and the disease.” Do you agree with Awdish’s assessment? Why or why not?

If you’re a physician, if you’re a patient: read this book. Discuss it with your colleagues, mull over it with your book club. The questions Awdish raises, the challenges she poses are vital to improving the way we care for each other in our most acute times of need.

Writing Prompt: If you’re a physician, did you learn to develop “aequanimitas” through your training? Did you feel this trait was a requirement, overtly stated or otherwise, to be a “good physician?” Have you yourself ever been a patient feeling, like Awdish, “powerless in a way that is impossible to imagine, from a privileged position of wholeness and well-being?” Awdish lists biting phrases that were directly said to her or that she overheard when she was a patient. Have you experienced similarly painful words from a medical provider? Have you said such words to a patient before? Try writing from both the patient and the medical provider’s perspectives. Write for 10 minutes.

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Narrative Medicine Monday: Baptism by Fire

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Pediatric Intensivist Gwen Erkonen’s fast-paced essay “Baptism by Fire” was recently highlighted in one of my favorite online creative nonfiction journals, Hippocampus Magazine. The piece begins with Erkonen sitting in Grand Rounds, a newly minted attending physician. Erkonen deftly describes the apprehension and weight of responsibility all physicians experience when, after a decade of training, they are finally in charge: “Four years of medical school, three years of pediatric residency, and three more years as a pediatric critical care fellow. My time as a medical apprentice is done. I no longer have an attending physician to help me with my decision-making. I am solely responsible for my patients.”

Erkonen’s pager calls her to an excruciating emergency: a toddler with extensive life-threatening burns. The reader is thrust into the dire situation with her as she assumes care of the critical patient, running the resuscitation efforts of the medical team and communicating with the young girl’s mother in the waiting room.

Erkonen not only relays her own inner turmoil during this first challenge of her new career, she also conveys her keen observations of the other participants. The surgery resident she first meets in the trauma bay “looks cool and in control with his hands folded across his chest and a broad-based stance, but I can tell from his shaking voice he’s not sure what to do.” Erkonen’s details describing the patient’s devastated young mother gives us insight that the family’s narrative is multi-layered and tragic even before this catastrophic event: “She starts to sob, and buries her head in the older lady’s chest. Then I notice that she has a disposable Bic lighter in her hand. She keeps flicking it so that flames jump from the spark wheel…. I notice that her hands are dirty. Not from the fire but because she hasn’t showered in several days.”

Most any physician can empathize with Erkonen’s inner dialogue. Years of training doesn’t negate the adrenaline-infused uncertainty when you first encounter the incredible weight of trying to save another’s life: “Feeling like an idiot, I nonetheless plow forward.” Erkonen is unflinchingly honest in her description of the events and her vivid details leave the reader breathless, exhausted and empathetic, as if we were watching them unfold on a medical drama, yet responsible along with her.

Writing Prompt: Think of a time when you were in a new position that held intense responsibility. Maybe it was your first week as an attending physician or a new job managing a large part of your workplace. Maybe it was your first hours as a new parent. Describe your own inner dialogue and your perception of others you interacted with during that time. Alternatively, try re-writing Erkonen’s essay from the point of view of the surgical resident, the burn nurse, the patient’s mother, the priest, the trauma surgeon. Write for 10 minutes.

 

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Narrative Medicine Monday: Feeding Tube

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In “Feeding Tube” author Susan Kelly-DeWitt relays a memory of paper birds that a patient’s family hung over the hospital bed “—wild tropical birds, macaws and toucans, parrots and cockatoo.” The visual that Kelly-DeWitt provides is vivid. The reader comes away feeling that humanity reigns over the mechanical devices that tend to dominate the hospital landscape.

I remember very little about the physical details of the critical care hospital room where I participated in my first code as a medical student. I do remember sitting by the resident physician as he wrote his note in the patient’s chart at the nurses’ station just after the man had died. I looked across the desk into the patient’s glass-walled room, my eyes fixed on an elaborate dream catcher hung carefully, just over his bed.

Writing Prompt: The hospital can sometimes feel a like a sterile, mechanical place. Think of a moment or an item, like Kelly-DeWitt’s paper birds, that struck you as out of place or particularly telling about a certain patient, their family and their life. Write for 10 minutes.

 

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Narrative Medicine Monday: The Dilemma Doctors Face

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The spotlight has recently been on the opioid epidemic ravaging our country. As a primary care physician, I’m acutely aware of this issue and the challenges it poses to individuals, medical providers and the public health system as a whole. NPR’s The Takeaway recently did a program on understanding this crisis and approached it from many angles. Dr. Danielle Ofri wrote short a piece in Glamour magazine that gives a primary care physician’s perspective. In “The Dilemma Doctors Face,” Ofri notes that chronic pain is very real but differs from other chronic disease in that there is no definitive test or measurement for pain, it is subjective. “Chronic pain is real. It can ruin people’s lives. But the anvil of addiction and death can’t be ignored.” Ofri asserts that one challenge is that a system that doesn’t often pay for other ways of treating pain, such as physical therapy, acupuncture and massage, makes it easier for the medical provider to “just write a prescription.” Can you relate?

Writing Prompt: Have you or a loved one struggled with chronic pain? What were the challenges you faced when trying to find appropriate treatment? Have you or a loved one struggled with opioid addiction? What was the first sign that this had become an issue? If you prescribe opioid pain medications, how do you approach counseling patients about the risks and benefits of taking these medications? What are some of the challenges you’ve faced in having this discussion? Write for 10 minutes.

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Narrative Medicine Monday: Lithium and the Absence of Desire

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Virginia Chase Sutton’s wrenching poem “Lithium and the Absence of Desire” warns of what may be lost in taking a necessary medication. She deftly describes the world before starting lithium and the reader is entranced along with her, “dozing in light and soaked color.” Despite side effects causing a graying of her world, the author dutifully takes “the medication as prescribed.” Written in second person, the reader is drawn into her longing for what she has lost and together we collectively struggle in vain: “Strain all you will but you have given desire away.”

Writing Prompt: This poem describes a negative, even devastating, side effect of a medication, yet the writer recognizes there was “No choice since you must take the pills.” Have you experienced a minor or life-altering side effect from a medication? Describe life before and after starting the medication. Did you keep taking the medication as prescribed, or did you search for a different treatment? Write for 10 minutes.

 

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Narrative Medicine Monday: Locked-in Syndrome

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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

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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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