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.
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.
Writer Catherine Harnett presents us with Magda in her opening paragraphs, a woman who wears “scarlet velvet shoes with bows, so ladylike” and “sends thank you notes to hostesses the next day.” Magda takes a cab to visit her husband, Conrad, who “cannot place her, though she seems familiar.” Magda notes that with this persona “she can talk with ease about The War, how hard it is to live without silk and chocolate.” Magda and Conrad have tea together and as she leaves she recalls the other roles she’s played. There is a melancholy sweetness to Magda’s character play. She has found a way to have satisfying interactions with her husband despite his progressive and painful memory loss. Her husband has, in fact, disappeared and Magda fills the void with her elaborate personas.
Writing Prompt: What do you think of Magda’s approach to meeting with her husband, who no longer remembers her? Is she taking on the different personas more for his benefit or for hers? Have you had a loved one who has forgotten who you were? How did it feel? If not, imagine someone close to you suddenly didn’t remember your life together. Write for 10 minutes.
Aaron E. Carroll provides a straightforward explanation as to why getting the flu shot is imperative to a healthy community. In his New York Times article “Still Not Convinced You Need a Flu Shot?” he notes we may be passing on the virus without realizing it, to people much more vulnerable than ourselves: “You can infect others a day before you show any symptoms, and up to a week after becoming sick. Children can pass along the virus for even longer than that.”
Carroll points out our lack of concern about the flu virus, so familiar every winter, is illogical: “Because the flu is so common, we tend to minimize its importance. Consider the contrast with how the United States responded to Ebola a few years ago. We had a handful of infections, almost none of them contracted here. One person died. Yet some states considered travel bans, and others started quarantining people.” He argues that we should be much more concerned about the flu, noting that influenza is the “only cause of death in the top 10 that could be significantly reduced by a vaccine. Lowering risks of heart disease, cancer or Alzheimer’s are much, much harder to do.” We have a way to decrease the morbidity and mortality from a common illness yet we choose not to harness that opportunity.
By looking at the history of the varicella vaccination, Carroll illustrates the benefit we gain through herd immunity and the ethical consideration of getting immunized even if you yourself are not at high risk. He notes that babies were dying from chicken pox prior to implementation of the vaccine, but “as rates of vaccination rose, the rates of death from varicella were low…. But more significant, from 2004 through 2007, not one child younger than 1 year old died in the United States from chickenpox. What was amazing about this finding was that we don’t vaccinate children that young for chickenpox — therefore, those babies’ deaths were not prevented because they were vaccinated. Their deaths were prevented because we vaccinated their older siblings.”
In a previous Narrative Medicine Monday post, I highlighted a New York Times article written by Dr. Danielle Ofri that I’ve used when teaching narrative medicine courses to medical professionals. It illustrates the challenge of communication between physicians and patients and why there often is a disconnect. How can we improve the dialogue to better inform the public and, ultimately, save lives?
Writing Prompt: Do you get your flu shot every year? Why or why not? Do you feel that you understand the reasoning for immunizations? What information might help you better understand? If you’re a medical provider, have you struggled to convey such information to patients? Think of such a time and write for 10 minutes.
Writer and nurse Catherine Klatzer organizes it all in her poem “Order.” I like that it is written in second person, puts the reader in the space of the patient who is “so civilized / so well-behaved.” I can relate to the narrator, finding comfort in gathering forms and ensuring everything is in order, even in documenting the pain. I can sense the absurd tension in deciding if the papers should be sequenced in chronological or reverse chronological order. The poem hints that there is a kind of respite, however ill-conceived, in controlling what we can control even when there exists an “an impossible rupture.”
Writing Prompt: Have you ever felt that “something is tearing, ripping open” yet you moved forward with assembling order to your life, to your medical records? How is ordering what is tangible helpful when we are bombarded by the chaos of illness? Alternatively, consider medical records. If you’re a provider, what is different about working with electronic records versus paper charts? As a patient, how do you compile your medical records? Are they neat and organized? Is there a sense of confusion or comfort when you read them? Write for 10 minutes.
Lise Saffran emphasizes the importance of meaning in public health communication in “The Art of Translating Science.” This conversation is imperative amidst a culture where many important topics become highly polarized and politicized. Saffran argues that it is important for scientists to not just speak more plainly, but emphasize understanding of a concept. She notes that this is more challenging today because “when it comes to politicized topics, our ability to understand is often overwhelmed by our inability to hear.”
As a primary care physician, much of what I do in my daily practice is translational work: explaining a diagnosis, a lab test result, the need for a certain medication, the risks and benefits involved in preventive screening. The goal is to ensure the patient understands the meaning of the medicine, not just the facts. As Saffran notes, “a single word may change the meaning of the whole story.” A physician is also interpreting the patient’s story, taking the narrative they provide about their illness and using this information to determine best next steps toward diagnosis and improving their health. A scientist communicating about public health issues needs to convey concepts on a much broader scale. Our ability to translate effectively will dictate our health as individuals and as a society going forward.
Writing Prompt: Think of a time when you didn’t fully understand what a physician was saying to you. Perhaps it involved a specific diagnosis or importance of a new medication prescribed or test ordered. Did you get the facts but miss the meaning? If you’re a medical provider, think about a time that you missed a significant part of a patient’s narrative. Did that lack of understanding affect their diagnosis or treatment plan? Alternatively, consider a time you read an article on a public health topic such as climate change or vaccinations. Did you understand the underlying purpose of the piece? Have you had a conversation with someone who disagrees with your viewpoint on such topics? What might have increased your ability to understand each other? Write for 10 minutes.
Poet Nellie Hill illuminates the process of learning anatomy in her Bellevue Literary Review poem, “Anatomy Lesson.” She notes that to “understand the heart you’ve got to memorize…” I remember searching for ways to memorize, as one professor put it, the “firehose” of information required as a new medical student. Anatomy is especially daunting, with all the blood vessels, nerves, muscle origins and insertions. Dissecting cadavers in anatomy lab is a rite of passage for every medical student, but we also drew pictures, color-coded organ systems, made up songs and stories to help us remember the essential information that is the human body. Hill starts with memorization, but takes the reader on a journey down the “snake path” of the body “to where thoughts become memories or dreams.” I like the imagery of “anatomy stacked like a ladder from your toes” and how Hill hints that the functional organ itself may also hold an intangible purpose.
Writing Prompt: Think about when you first learned anatomy. Even if you’re not in the healthcare field and never took a more intensive course in the subject, we all learn about basic bones and organs as children. Did learning about anatomy help you to see the body, and your own body, differently? When was the last time you thought about anatomy? What are your thoughts on how the physical body or certain organs might be connected to a greater or hidden purpose (acupressure points, the mind-body connection)? Write for ten minutes.
Brenna Working Lemieux’s poem “Someone Else’s Pain” illustrates the struggle to understand what others are feeling, how challenging it can be to fully grasp another’s suffering. The patient experiences “some driven-screw anguish that flares” that they attempt to explain. Lemieux can only “nod or shake [her] head.”
I can relate to Lemieux; medical providers regularly face the challenge to decipher a patient’s explanation of illness or pain. I delivered babies for many years before I had my own children. After I experienced labor for the first time myself, I cringed recalling many of the comments, modeled after other medical providers, I had made to laboring patients prior to experiencing that pain myself. I had been sympathetic to their pain but could not embody empathy in the same way I could after I had gone through a similar experience. I had no reference point to the crushing agony of contractions that I would later understand. Of course, we can’t fully experience everything our patients go through. However, we can become better at listening and responding to the story they are trying to tell.
Lemieux likens listening to the patient describe their pain to the focus she had in art class, “trying in vain to capture” an image of her hand. Her poem illustrates the nuances and importance of narrative to medicine, the need to hone our listening and storytelling skills to improve the relationship between patient and physician and, ultimately, medical care as a whole.
Writing Prompt: What is the biggest challenge in understanding another person’s pain or illness? Have you ever tried to describe such an experience to a friend or healthcare provider? Think of a time you were on the explaining or the listening end of such a conversation. Write for 10 minutes.
In Cheryl Strayed’s essay “Heroin/e” she writes about our ways of facing death, dying, grief and the will to live. Strayed loses her mother to cancer and suffers her own descent into addiction. Strayed’s love for her mother is evident and the loss she feels is acute. When her mother first learns of her diagnosis, Strayed recounts them silently entering the restroom, “Each of us locked in separate stalls, weeping. We didn’t say a word.” Strayed describes the numbing of pain and the warping of time for each of them: “The days of my mother’s death, the morphine days, and those that followed, the heroin days, lasted only weeks, months–but each day was an eternity, one stacked up on the other, a cold clarity inside of a deep haze.”
Writing Prompt: What does it feel like, in a physical sense, to suffer from addiction? From grief? Do you think addiction and grief are linked? Why or why not? Think of your own experience or a time you’ve witnessed this in a patient. Write for 10 minutes.
Poet Rachel Hadas describes how those near the end of life grow distant before they pass in “The Second Floor.” She begins with a dream, consisting of “a harried pilgrim to a shrine.” She states that “[a]s quickly on their short legs toddlers move, / tall parents lumbering in slow pursuit, / so they speed onwards, people whom we love.” I like the unexpected juxtaposition of the unsteady toddler at the beginning of life to the dying loved one at the end. She paints an image of Sam and his daughter cradled together in “[s]leep and love, the quick, the nearly dead.”
Writing Prompt: Do you agree with Hadas’ assertion that the terminally ill are “somehow out of reach well before the grave?” Why or why not? What role do dreams play in our processing of ill or dying loved ones? Have you experienced such a dream? Write for 10 minutes.