Narrative Medicine

Narrative Medicine Monday: Medicine and Its Metaphors

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In this excerpt in Guernica from Eula Biss’ book On Immunity, she wonders at the different metaphors in medicine. Though paternalism is clearly fraught with issues, if it “has fallen out of favor in medicine… how we should care for other people remains a question.” Biss explains Michael Merry’s distinction between paternalism that promotes good or prevents harm, such as “in traffic laws, gun control, and environmental regulations,” and the misuse of regulations that are “often used to justify a coercive use of power.”

Biss notes the alternative that is offered, autonomy, has caused “the paternalism of doctors [to be replaced] by the consumerism of patients.” Today’s physicians see the results of this shift in their daily work, responding to patients’ requests of “tests and treatments from a menu based on [their] consumer research.” In modern medicine, the consumerist culture is such that, as Biss notes, “doctors may be tempted to give patients what we want, even when it is not good for us.”

How do we address the problems for patients and for healthcare providers with both the paternalistic and the consumerist cultures? Biss turns to the idea that a more caring framework might be the answer. When her son requires a surgery her father advises, “‘If you’re going to get medical care you’re going to have to trust someone.’” Biss notes she usually consults her father first regarding medical issues—she trusts him. But the decision point regarding her son’s medical situation was not her father’s area of expertise. She realized she had to rely on another’s advice.

Biss tries every other treatment option for her son that was suggested by other specialists or friends. She does her research. But eventually her son’s symptoms worsened: “Then his breathing, already loud, became irregular at night. I crouched next to his bed, holding my own breath during the pauses in his breathing to gauge how long he was going without air. After particularly long pauses he woke, gasping and coughing. I scheduled the surgery.”

When the day of the surgery comes, Biss “was most hopeful not that the surgery would enact a miracle, but that it would simply do no harm.” Biss then requests to remain with her son as he undergoes anesthesia, which the doctor resists: “Studies had shown, he told me, that the body language and facial expressions of anxious mothers can cause children to fear surgery and resist anesthesia.” Biss persists, and she and the anesthesiologist come to a compromise: she will hold his hand but not be in view of her son as the medicine takes effect. When he wakes from anesthesia, Biss has not been summoned to the recovery room yet and her son calls out for her in panic. The experience is traumatic for both Biss and her son. All the anesthesiologist offers is that her son won’t remember “any of this,” though Biss replies, “I will.”

Biss’ father offers a new metaphor for modern medicine, that I believe both patients and physicians can envision: Dracula. Her father argues that “‘medicine sucks the blood out of people in a lot of ways.’” There are the financial aspects for the patient, and dire emotional consequences for patients, their families, and often for healthcare providers, who are suffering from an epidemic of burnout. Biss notes that her physician father himself is “fairly skeptical of medicine,” stating that “‘most problems will get better if left alone. Those problems that do not get better if left alone are likely to kill the patient no matter what you do.’” It is a grim declaration in many ways, but perhaps the vampire metaphor puts patients and physicians on a more appropriate plane: working together to resist the anemia of compassion and trust that threaten us all, and in so doing improve the care we give and receive.

Writing Prompt: What metaphor do you think is most accurate of medicine today? Can you think of another metaphor for the difficulties encountered by patients and healthcare professionals? Have you experienced, as a patient or as a physician, the issues with paternalism or consumerism in medicine? Alternatively, what role should skepticism or comfort play in medicine? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: Complaint

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We discussed writer and physician William Carlos Williams’ “Complaint” during a poetry lecture at the first workshop of Harvard’s Media & Medicine program. I was struck by how differently those in the class, mostly clinicians, interpreted this poem.

I saw it as Williams’ manifesto for physicians. Healthcare professionals often feel a calling to their work. Though it is a challenging road, in both training and practice, there is rich meaning inherent in the work we do. Williams at first seems reluctant to move into the dark in the middle of the night, but when he arrives to the patient’s home, he is able to “shake off the cold.” He finds a “great woman / on her side in the bed.” There was discussion as to what Williams meant by “great woman.” Why do you think he used this adjective? Do you find his tone in the poem complementary or otherwise?

There were different thoughts on Williams’ curious use of “perhaps” in the following lines: “She is sick, / perhaps vomiting, / perhaps laboring / to give birth to a tenth child.” These are things that, as her physician, you’d expect him to be clear about. I wonder if the use of “perhaps” is a commentary on medicine itself. Our patients could be suffering, and do, from all kinds of illness and ailments and, though not interchangeable, regardless of their disease, we owe them our attention and compassion.

Williams ends tenderly, a hope for the profession, despite a tone of distancing himself from the situation. These last lines reveal the intimacy that often occurs between healthcare providers and patients. The doctor begins in the chill of midnight, going because he is called, but ends with this moment of compassion. Can you relate to this scene, either as a patient or as a physician?

Writing Prompt: Do you think in today’s world of modern medicine patients and their doctors still connect in the same way as during Williams’ era? How is a house call different from an office visit at a clinic? What do new technologies (email, video visits, chat) offer patients and their medical providers, and how do these interactions limit that relationship? Alternatively, think about the title of this poem. Why do you think Williams called it “Complaint?” Write for 10 minutes.

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Narrative Medicine Monday: Who Heals the Healer?

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Dr. Huma Farid asks “Who Heals the Healer?” in her recent essay in JAMA, and her answer might surprise you. Farid describes weeping alongside her patient early in her obstetric training when she delivers a stillborn baby. The gravity of this experience affects Farid deeply as she reflects on human suffering, recognizing “that my work would encompass taking care of women at some of the worst times in their lives.”

As Farid progresses in her career, though, she realizes that she no longer has the same reaction, the same connection to the suffering of her patients: “My eyes dry, I wondered, when was the last time I had truly connected with a patient, empathized with her sorrow, and allowed myself to feel a sliver of her pain?”

Farid acknowledges that at that time she was also going through her own personal difficulties, and that despite this, she did her best to “remain empathetic and kind” to her patients: “I tried to give as much of myself as I could, but I felt like I had a finite, limited reserve of empathy.” Do you view empathy as a finite resource, or have you experienced a similar limited reserve to connect with your patients?

Farid’s commentary really resonated with me. It seems a simple statement to say doctors are human too, but it’s a reality we often forget. Most doctors are incredibly resilient and, even so, it only takes one personal life stressor to topple the precarious balance of mental and emotional rigors that come with being a physician in today’s healthcare environment. As Farid notes, the decline in empathy “may be driven by the demands of modern medicine and exacerbated by personal experiences.”

When I experienced my own significant personal life upheaval a few years ago, I, like Farid, “was still able to perform my clinical duties and to provide good patient care despite struggling to be empathic. However, studies have demonstrated that physician empathy improves both patient outcomes and patient satisfaction….” Ideally, for both the patient and physician’s sake, we would find ways to combat the decline in empathy that is an inherent byproduct of the current healthcare environment.

Ultimately, Farid determines that empathy “enables us to understand and connect with a patient’s perspective, an invaluable resource in an environment that has become increasingly polarized and rife with divisions.” Farid describes an interaction with a patient where she “mostly listened” and, in return, receives heartfelt thanks and hugs. Through that emotional and physical connection, Farid regains a piece of her “profoundly and imperfectly human” self. May we all find a way to move in that direction.

Writing Prompt: Farid wonders “what it meant for me that I had lost some ability to feel a patient’s pain.” If you’re a healthcare professional, have you lost some of that ability throughout your medical training or career? Think about a time you failed to have empathy for a patient’s suffering or, as a patient, that you felt your healthcare provider had little empathy for your pain. Alternatively, describe a time that your empathy has been “rekindled.” Write for 10 minutes.

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Narrative Medicine Monday: Having and Fighting Ebola

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I wrote yesterday about how I attended a summer institute in Paris that focused on health beyond borders. The final keynote speaker was Dr. Craig Spencer, who shared his work rescuing and treating migrants in the Mediterranean.

Dr. Spencer has worked extensively in global health, and in 2015 wrote an essay published in The New England Journal of Medicine about contracting Ebola when he was treating patients in Guinea. He was a clinician who became a patient, fighting for his life.

In Spencer’s piece, he outlines how the “Ebola treatment center in Guéckédou, Guinea, was the most challenging place I’ve ever worked.” Though there was no clear breach of protocol, Spencer still returned home having contracted Ebola, becoming “New York City’s first Ebola patient.” Spencer shares both the anxiety and compassion he felt in caring for patients with Ebola: “Difficult decisions were the norm: for many patients, there were no applicable algorithms or best-practice guidelines.”

Dr. Spencer shares how, back in New York, after “the suffering I’d seen, combined with exhaustion, made me feel depressed for the first time in my life.” Though immediately presenting to the hospital the moment he exhibited any sign of illness or elevated temperature, Spencer is vilified in the media, his activities upon returning home scrutinized and “highly criticized…. People excoriated me for going out in the city when I was symptomatic, but I hadn’t been symptomatic — just sad. I was labeled a fraud, a hipster, and a hero. The truth is I am none of those things. I’m just someone who answered a call for help and was lucky enough to survive.”

Spencer calls out the panic that ensued after his diagnosis, how politicians “took advantage… to try to appear presidential instead of supporting a sound, science-based public health response.” He points out that “At times of threat to our public health, we need one pragmatic response, not 50 viewpoints that shift with the proximity of the next election. Moreover, if the U.S. public policy response undermined efforts to send more volunteers to West Africa, and thus allowed the outbreak to continue longer than it might have, we would all be culpable.” Spencer notes not only the misguided response to his own infection, but also the ripple effects this policy could have had on the outbreak worldwide. His is a cautionary tale of how a response to any public health situation must be grounded in steady pragmatism and based in scientific fact. Lives depend on it.

Writing Prompt: Dr. Spencer shares how, after witnessing significant suffering through his work with Ebola patients, he felt “depressed for the first time in my life.” If you are a medical provider, have you experienced similar secondary trauma? How did this manifest? Where did you find support? Alternatively, consider that Spencer urges us to “overcome” fear. Reflect on what you are fearful of, from a public health standpoint or otherwise. Is it a rational or irrational fear? How might it be overcome? Write for 10 minutes.

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Narrative Medicine Monday: Hospital Writing Workshop

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Poet and physician Rafael Campo describes the magic that can occur in a “Hospital Writing Workshop.” Campo starts the poem at the end of his clinical workday, “arriving late, my clinic having run / past 6 again.” Campo is teaching a workshop for “students who are patients.” He notes the distinction that “for them, this isn’t academic, it’s / reality.” These are patients with cancer, with HIV, and Campo is guiding them through poetry and writing exercises to search for healing and respond in a unique way to their disease and suffering.

Campo outlines his lesson, asking the students to “describe / an object right in front of them.” Each interprets their own way, to much poignancy. One student “writes about death, / her death, as if by just imagining / the softness of its skin … she might tame it.” In the end, this poem is about the power of poetry and art for both the patient and the medical provider. It’s about how something as simple as a writing workshop can cause us to pause, “take / a good, long breath” and move through suffering to a kind of healing, to a kind of hope.

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Narrative Medicine Monday: Perchance to Think

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A couple of years ago I was driving to work when I pulled up behind a car that had a red bumper sticker with white block lettering: “THINKING IS WORK.” When I arrived at my desk that day I wrote this statement on a Post-it note in my barely legible handwriting and moved on with my busy primary care clinic day.

Since then, I’ve had little time to ponder this idea, but it’s always been there, in the back of my mind, the Post-it still pinned to my desk bulletin board. We live in an accelerated world, saturated with information at our disposal. Though I’ve noticed, in my life and in medicine, there is less and less time to access this information, to research, or just think.

Dr. Danielle Ofri’s latest piece in the New England Journal of Medicine highlights this issue. In “Perchance to Think” Ofri outlines a common problem among primary care (and I’m sure all speciality) practices – there isn’t time allotted to actually think about a case. Ofri gives the example of a patient with slightly abnormal lab tests ordered by another physician. As the primary provider, Ofri is then tasked with sorting out whether this patient has adrenal insufficiency or rheumatoid arthritis while also addressing his six known chronic conditions. Ofri notes that, for primary care physicians, “adrenal insufficiency resides in the wobbliest, farthest-flung cortical gurus I possess.” Ofri quickly realized, as her “patient stacked his 15 medications on my desk – all of which needed refills, and all of which could interfere with adrenal function” that what she really needed to give this patient the best care possible was “time to think.”

In medical school we have time to study, to think deeply as we learn the intricacies of the human body and how to treat illness when things go wrong.

Once out in practice, though, there isn’t the luxury of that time to ponder. More and more demands are put on the physician, be it “last week’s labs to review, student notes to correct, patient calls to return, meds to renew, forms and papers spilling out of my mailbox.” Ofri eventually gives up, gives in to the time constraints of the system, and refers the patient to endocrinology to sort out the adrenal insufficiency issue.

As a primary care physician myself, this is an all too familiar dilemma. Ofri recognizes that this situation is untenable to all involved: the patient, the primary care provider, and the specialist. “In the pressurized world of contemporary outpatient medicine, there is simply no time to think. With every patient, we race to cover the bare minimum, sprinting in subsistence-level intellectual mode because that’s all that’s sustainable.”

Ofri eventually takes the time to listen to a podcast on adrenal insufficiency, addend her note and contact the patient with a more cogent plan until he’s able to see endocrinology. But this was time that isn’t usually allotted or even available in a normal physician’s busy life: “many of our patients’ conditions require — time to think, consider, revisit, reanalyze.”

Ofri laments there’s no way to code for contemplation, but asserts that giving physicians the time to think could improve efficiency. “We would save money by reducing unnecessary tests and cop-out referrals. We’d make fewer diagnostic errors and avert harms from overtesting. And allowing doctors to practice medicine at the upper end of our professional standard would make a substantial dent in the demoralization of physicians today.”

Here’s to considering a more wholistic way of practicing medicine, one that includes the intellectual rigor that attracted most physicians to medicine in the first place. After all, thinking is work.

Writing Prompt: Do you think giving physicians time to think would make a difference in efficiency? Have you experienced a case similar to Ofri’s, where if you had a little more time to research, you could manage the case yourself? As a patient, do you notice the time pressures on your physician? Describe what it’s like to experience this as a patient, as a provider. Write for 10 minutes.

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Narrative Medicine Monday: Burnout in Healthcare

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I’ve wanted to attend Columbia’s Narrative Medicine workshops for years. Life finally aligned to make that possible this past weekend as I joined professionals from different disciplines gathered to address “Burnout in Health Care: The Need for Narrative.” As a wellness champion for my physician group, this year’s topic was particularly pertinent to my work and practice.

The conference consisted of lectures from leaders in the field of narrative medicine alternating with small group breakout sessions. I was fortunate enough to have Dr. Rita Charon, who inaugurated the field of narrative medicine, facilitate two of my group’s sessions, which consisted of close reading and reflective writing and sharing. This format allows for in depth discussion with medical and humanities professionals, as well as time for introspection about how best to expand on learned concepts and practices when we return home.

Several takeaways for me:

Narrative can be used to address many issues in healthcare, burnout among them. I’ve been facilitating a Literature & Medicine program for my own physician group, and have taught narrative medicine small group sessions to resident physicians, but am inspired to do more of this work to expand the reach to medical professionals and patients. Dr. Charon encouraged us to disseminate the skills deepened through the humanities, that these are what’s missing from a health care system that has become depersonalized. Skills learned through narrative medicine can improve team cohesion, address moral injury and bias.

Writer Nellie Herman offered Viktor Frankel’s words: the primary force of an individual is to find meaning in life. Herman showed us how writing can help us find that meaning, giving shape to our experiences, our memories. Harnessing creativity can be particularly important for those of us who experience moral injury because “when we write, we externalize what is inside us.” Through writing and sharing, we’re making a commitment to something, a raw, less mediated version of events. Through this vulnerability we connect to others; though difficult, that’s what makes it valuable.

Dr. Kelley Skeff approaches burnout and narrative from a physician educator’s perspective. It is not lost on anyone who has been a medical resident or trained them that “we have trained people to take care of patients, even if it kills them. We have trained people to keep quiet.” Skeff offers us this quote from Richard Gunderman: “Professional burnout is the sum total of hundreds and thousands of tiny betrayals of purpose, each one so minute that it hardly attracts notice.” He implores us to combat the code of silence and ask ourselves and each other: What’s distressing you?

Maura Spiegel contends that “narrative language can proliferate meaning.” Spiegel used film clips to show how we can gain access to our own experience. In watching a film, we’re not called upon to respond, but we are often running our own parallel stories along with the movie. Spiegel showed clips from the movies “Moonlight,” “Ikiru,” and “Philadelphia,” and the documentary “The Waiting Room.” In that final clip we saw a young doctor run a code in the Emergency Room where a teenage boy dies. He then is tasked with telling the family the devastating news. He seeks out support from his colleagues on how to do this. Spiegel notes a quote from Jonathan Shay: “Recovery happens only in community.”

I was bolstered to hear about he the work of Craig Irvine and Dr. Deepu Gowda, who discussed how to create a culture for narrative work, both in academic institutions and in clinics. Dr. Gowda explored using narrative medicine sessions with the entire medical team (including nursing staff, administrators, physicians) and found improved teamwork, collaboration, and communication. Both suggested building a team of people interested in narrative work, be they art historians, philosophers, writers, physicians, or psychologists.

More than anything, this workshop churned up ideas and inspired methods that could be used at my own workplace to use narrative work to address burnout. I came away encouraged and connected to colleagues who are interested in the same questions and in addressing the daunting problem we face in our current health care system. Ultimately, we want to “allow voices to be heard, and address suffering, not only of patients but also of medical providers.” This work is challenging, but necessary. As Tavis Apramian noted in the final lecture of the conference, “the meaning that we draw from other people is the reason to keep going.” That it is. I hope to continue learning about this important work and am grateful for the faculty at Columbia who inspire tributaries (or rhizomes!) of narrative and creativity throughout the medical world.

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Narrative Medicine Monday: A Tense Moment in the Emergency Room

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Author and physician Danielle Ofri’s latest piece in The Lancet outlines “A Tense Moment in the Emergency Room.” Ofri describes the concern of an African-American medical student as a “young man stormed into the doctors’ station… and held up his toddler. ‘My baby’s choking and you guys aren’t doing anything.'” The medical student knows she is least senior of the gathered medical professionals, but she also is the “only African-American person among the white doctors” and is “acutely aware of the fraught dynamics,” given the child’s father is also African-American. She considers stepping forward to assist, even though per her estimation the child is not in imminent danger. Instead, she holds back. Ultimately, the “highest person in the medical hierarchy” asks the man to return to his room and the situation escalates.

Ofri notes what anyone who has visited or worked in a hospital is keenly aware of: the hospital is a stressful place. Given the already heightened tension, if you “[a]dd in issues of race, class, gender, power dynamics, economics, and long wait times … you have the ingredients for combustion just hankering for tinder.” The broader issue is that “racial and ethnic disparities in medical care are extensive” and “implicit or unconscious bias is still entrenched in the medical world.” How have you witnessed this issue in giving or receiving medical care yourself? Do you know if the organization you work at, or receive medical care from, is working to address implicit bias in medicine?

The medical student’s reaction to the father differed from her white colleagues: “When the father stormed into the doctors’ station, she saw fear and concern; her fellow physicians saw aggression.” These issues are complicated by the various power dynamics that exist in medicine. On one hand, the medical student wonders if she would be treated similar to the father if she were a patient there, given they are both African-American and therefore “look the same to the outside world.” However, in that situation she was both “part of the powerful group—the doctors—but as a medical student, she was singularly powerless… a medical student might just as well be part of the furniture.”

Ofri contends that in the medical field we often justify our behavior in tense encounters “because we surely know that we are not racist, or sexist, or homophobic. We are good people and we have chosen to work in a profession dedicated to helping others, right? How could our actions possibly reflect bias?” Ofri calls us to seek out stories, to listen to one another. Medicine, after all, “remains an intensely human field: illness is experienced in human terms and medical care is given in human terms. We humans bring along our biases and stereotypes—that is true—but we also bring along our ability to communicate and to listen.” I know this is a skill I need to continually cultivate in my own practice. How might you listen better today?

Writing Prompt: Have you experienced a similar situation as this medical student regarding power dynamics, wether related to race, class, gender, or level of training? Think about such an event, either during your medical training or when encountering a medical professional as a patient. How did the people around you react differently? How did you react? Did your perspective of the incident change over time? Write for 10 minutes.

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Narrative Medicine Monday: The Insulin Wars

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Dr. Danielle Ofri’s opinion piece in the New York Times last week outlines “The Insulin Wars.” As a primary care physician who cares for hundreds of patients with chronic diseases, including diabetes, I could relate to Ofri’s frustration and outrage on behalf of patients and providers.

Ofri describes how her patient’s insurance company keeps changing the insulin that is preferred and therefore covered. This can be challenging for both the patient and the prescriber to keep up with, and there can be serious health consequences if there is a gap in use of this critical medication.

Ofri notes that “[b]etween 2002 and 2013, prices tripled for some insulins.” She offers several reasons that this is the case, but highlights that insurers use “pharmacy benefit managers, called P.B.M.s, to negotiate prices with manufacturers. Insurance programs represent huge markets, so manufacturers compete to offer good deals. How to offer a good deal? Jack up the list price, and then offer the P.B.M.s a ‘discount.'”

The end result for patients who can’t cover the costs of this vital medication may mean self-rationing, fluctuating blood sugar levels, and rejected prescriptions. For physicians, “it’s an endless game of catch-up.” It’s also a “colossal time-waster, as patients, pharmacists and doctors log hours upon hours calling, faxing, texting and emailing to keep up with whichever insulin is trending. It’s also dangerous, as patients can end up without a critical medication for days, sometimes weeks, waiting for these bureaucratic kinks to get ironed out.” There can be dire consequences for a diabetic patient to have short or long term uncontrolled diabetes.

In trying to get her patient’s insulin switched to an acceptable alternative, Ofri discovers that the insurance company “now had no insulins on its top tier. Breaking the news to my patient was devastating.” Ofri realized that the insurance company had found a way to place the burden on physicians and patients: “Let the doctors be the ones to navigate the bureaucratic hoops and then deliver the disappointing news to our patients. Let patients be the ones to figure out how to ration their medications or do without.” This piece highlights a sobering fact too common in modern medicine: the system often gets in the way of the best interest of the patient. We can, we must, find a better way.

Writing Prompt: Have you encountered a similar issue with insulin, either as a patient or as a physician? Have you seen other vital medications involved? What frustrates you most about the situation? How does this issue affect the patient-physician relationship? Write for 10 minutes.

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Narrative Medicine Monday: Narrative Gatherings

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The first Medical Humanities Twitter Chat, or #medhumchat, happened January 2nd and was curated by Dr. Colleen Farrell, an internal medicine resident. Although I wasn’t able to fully participate (bath time for my three kids, as often is the case, was not a well-controlled event that offered much down time for a Twitter chat), I was able to go back and read the lively conversation.

Farrell notes in this follow up post the role the humanities play in helping “make sense of the seemingly senseless suffering and heartbreak I witness daily as a doctor.” This seems a common sentiment among medical providers today, as varied opportunities in narrative medicine expand.

Farrell’s blog post lists the Medical Humanities Chat readings and questions, along with a few responses from participants. It’s an interesting format to interact with medical professionals and patients from all over the world.

The next Medical Humanities Chat will be this Wednesday, January 16th at 9pm EST, on the topic of Racism & Medicine. I’m hoping, bath time willing, to be able to participate in this important discussion.

Locally, I recently attended the Northwest Narrative Medicine Collaborative‘s inaugural Seattle event, a medical moth with the theme of “My First Time.” The event sold out in just a few weeks and the stories told were varied, often humorous, and resonant with the crowd of both medical providers and the general public.

The next Seattle NW Narrative Medicine Collaborative event is yet to be announced, but I know is already in the works.

The popularity of these opportunities to share our stories, consider a narrative, process the intimate and at times wrenching role we as medical providers play in health and illness, highlights the thirst for such contemplation and conversation among increasingly burnt out physicians and frustrated patients. I find myself, ten years into my own career in primary care, seeking out such community, eager to help cultivate ways to gather and share.

I hope, wherever you are, you can find or foster similar opportunities to share your story, consider your patients’ narratives, and use the humanities as a tool for further introspection and connection.

Writing Prompt: Consider reading the pieces Dr. Farrell selected for the first #medhumchat and answer the questions posed in written form. Were your answers similar to the ones posted during the live chat? Did you gain a different perspective after reading through the conversation? Did any of your answers or reactions to the readings surprise you? Write for 10 minutes.

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