Narrative Medicine

Narrative Medicine Monday: Disaster Relief

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Today’s Narrative Medicine Monday is a bit different. In light of recent catastrophic hurricanes in the U.S., there have been many stories about disaster relief and people stepping up to help in ways they’re not used to. One such person is Dr. Jennifer McQuade. This NPR story describes how McQuade, a melanoma oncologist, dropped off basic supplies to a shelter following hurricane Harvey and discovered the medical aid there severely lacking. She then found herself in charge of a medical shelter, enlisting the help of other physicians and medical providers via a physician moms social media group. Often in such situations we’re called upon to help each other in ways we might not imagine possible. As Texan Claudia Solis notes in the story, “There’s a kindness…. They’re your neighbor, and you have to help, and it’s beautiful.”

Writing Prompt: Have you ever found yourself in a situation where you had to provide medical care beyond your normal area of expertise? Have you ever been the recipient of such care? Describe the situation and how you felt. How did it bring you closer to the people around you? Write for 10 minutes. 

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Narrative Medicine

Narrative Medicine Monday: The Permanent

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In “The Permanent,” Amy Burke Valeras takes us back to the 1980s when perming your hair was a thing. In the first half of the poem, Valeras opens up about her struggle with her hair; I could relate. I similarly begged for an ill-advised perm the same year, the same age as the author. I like how Valeras makes her hair a central character of the poem. We battle along with her preteen self as she tries to tame the “frizzy poof.” We can understand when, two decades later, she is told she has cancer but all she can think of is: “My hair!”

Writing Prompt: Think of an every day aspect of your life, of your body, that you took for granted or had a different relationship with until you became ill. Consider level of energy during a bout with the flu, walking with a sprained ankle; maybe you have lost your hair to chemotherapy or a breast to invasive cancer. Write about your relationship with this aspect of your body before you became ill and after. How did things change? Write for 10 minutes. 

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Narrative Medicine

Narrative Medicine Monday: A View from the Edge

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Dr. Rana Awdish is a critical care physician turned advocate for training in compassionate care following her incredible near death experience in her own hospital. Her essay “A View from the Edge” in the New England Journal of Medicine provides an overview of her 2008 experience as a critically ill patient cared for by her colleagues.

In her book “In Shock,” out this October by St. Martin’s Press, she outlines her harrowing near-death illness and recovery. I’m eager to read Awdish’s book and hear more about how her experience led to advocacy for “compassionate, coordinated care.” In her NEJM essay she describes how “small things would gut me. Receiving a bill for the attempted resuscitation of the baby, for example…. A trivial oversight, by a department ostensibly not involved in patient care, had the potential to bring me to my knees.” After recovering, Awdish channels her grueling patient experience into a drive to transform the way we receive and provide medical care. She contends “we need to reflect on times when our care has deviated from what we intended — when we haven’t been who we hoped to be. We have to be transparent and allow the failure to reshape us, to help us reset our intention and mold our future selves.”

Writing Prompt: Have you noted an erosion of empathy among medical providers? If so, think of a specific example and write about how you felt as the patient. If you’re a medical provider, have you ever been cared for by colleagues at your own hospital? What was it like to be on the “other side,” as a patient? Did you come away from the experience with new knowledge and empathy that you then incorporated into your own practice? Write for 10 minutes. 

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Narrative Medicine

Narrative Medicine Monday: Wernicke-Korsakoff

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Poet and medical student Sarah Shirley describes an evolving interaction with a patient in “Wernicke-Korsakoff.” The patient initially finds complaint with everything: “the too soft too hard bed, the lunch that came with only one spoon though clearly two spoons were required.” Shirley struggles to connect with the disgruntled patient, who clearly wants nothing to do with her as an intrusive medical student.

Throughout my medical training and career I’ve encountered patients, like in “Wernicke-Korsakoff,” where “everything is thrown back.” They were angry at their disease, angry at the medical providers, angry at the system, angry at the world. At times, I’ve been one of those patients myself. There’s no doubt health and illness affect our mood. Many of those who are suffering build a shell to cocoon themselves off from the damaging world. Often they are rightfully skeptical of a medical system that has many failings. Shirley finally breaks through to her patient in the end, after searching for the right connecting point. 

Writing Prompt: Think about a time you were sick. How did being ill affect your mood and interactions with others? Were you inclined to cling to others for support or did you find yourself “raging against the world?” Perhaps you experienced both. What about a time when you were caring for someone who was sick? Did they allow you to connect with them right away or was it a struggle? Write for 10 minutes.

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Narrative Medicine Monday: #3 In Line

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Eliza Callard imagines a lung transplant in her vivid poem “#3 In Line.” She begins by describing the surgeon’s actions lifting “the sodden lungs out,” but then pauses to wonder about the patient: “Where will she be for all this?” Callard touches on the desperation following any transplant to get the foreign object to “stay, stay,” to trick a body into accepting an imported organ as one of its own. 

Writing Prompt: Imagine an organ transplant: liver, lung, kidney. Write about the transplant from several different perspectives: that of the patient, her body, the transplant surgeon, the patient who donated the organ, even the organ itself. Write for 10 minutes. 

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Narrative Medicine Monday: An Expert in Fear

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Author Susan Gubar writes about cancer making her “An Expert in Fear” in her timely essay. She asserts that this anxiety has become more acute in the recent political climate, with debates about major changes to healthcare, Medicaid and insurance coverage in the forefront of our national discourse.

Gubar contends that cancer fears fuel other fears and that cancer patients become “experts in fear.” If you’ve dealt with cancer, has this been your experience? She also highlights the detrimental impact fear can have on our health, and that severe financial distress has been found to be a risk factor for mortality in cancer patients. Gubar feels there is no appropriate word for the dread she experiences today. It is a “fear of fear spiraling into vortexes of stunning trepidation” and has, in fact, become all-pervasive and metastatic. 

Writing Prompt: What fears do you harbor related to health and illness? Have you found that the political climate impacts that anxiety? Do you agree with Gubar that fear is pervasive in today’s world? Write for 10 minutes.

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Narrative Medicine Monday: Bedside Rounds

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John L. Wright’s poem, “Bedside Rounds,” speaks to the apprentice-like training of physicians. It is a passing on of skills from the experienced to the inexperienced, from the knowledgeable to the clinically naive. Most medical students, unless they have a background in another medical field, have little to no real experience in the hands-on component of medicine. They take years of study – biology, anatomy, pathophysiology – and translate that book smarts into skills of diagnostic touch, suturing skin, prescribing treatment. 

One method of transforming head knowledge to a practical skill set is through bedside rounds: a gaggle of medical students and resident and fellow physicians (still in training) following after an experienced attending physician. Each morning this group travels from bedside to bedside, discussing the patient’s disease, the patient’s prognosis, the patient’s progress, the patient’s treatment plan. In recent years, medical schools have worked on making this process more inclusive of the patient who, after all, is the subject of the discussion. 

Wright’s poem touches on the experience of that patient, ill and incapacitated, being talked over in a cryptic language, determinations being made about the status and plan while the patient may still be steeped in a cloud of confusion. 

Wright finds himself in a comparable situation when his landscape architect brings her intern along with her one day. As this professional passes on her skills to her protégée, discussing his yard in detail, Wright begins to feel something he hadn’t expected: “I begin to resent them—the little games they play.”

Writing Prompt: Think of a time you’ve experienced bedside rounds as a physician, as a patient or while visiting someone in the hospital. If you were the patient, how did you feel when the medical team discussed your case in front of you? Did they include you in the discussion or explain what they talked about? If you’re a medical provider, choose a memorable bedside rounding experience: running rounds for the first time, being a brand new medical student, noticing something significant with the patient’s demeanor while their case was being discussed. Write for 10 minutes.

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Narrative Medicine Monday: Architecture of Mental Illness

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This fascinating National Public Radio story by Susan Stamberg reviews an exhibition at the National Building Museum exploring the links between architecture and mental health. It outlines the history of Washington, D.C.’s St. Elizabeths Hospital, first opened in 1855 and championed by Dorothea Dix, a pioneering advocate for more humane treatment of mental health patients.

The article states that Dix “‘believed that architecture and landscape architecture would really have a role in curing people.'” Do you agree? Have you witnessed physical surroundings play a significant role, either positively or negatively, for a patient or loved one with mental illness?

Some of the photos included in Stamberg’s story conjure up a dignified 19th century hotel. Dix was a proponent of having beautifully manicured grounds and St. Elizabeths was designed specifically to have “natural light and views of the outdoors” and “heat, tall arched windows and screened sleeping porches where patients could catch summer breezes.”

Writing Prompt: Use one of the photos from Stamberg’s story as a writing prompt for a free write. Imagine you are one of the patients (or nurses) in the St. Elizabeths Hospital of the 19th century. How does the space make you feel? Alternatively, if you’ve visited or worked in a contemporary inpatient mental health facility think about the design of the place. How could it be improved on? How do you think the features affect the inpatients? Write for 10 minutes. 

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Narrative Medicine

Narrative Medicine Monday: The Colostomy Diaries

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With humor and candor, Janet Buttenwieser writes in “The Colostomy Diaries” about awaiting her gastrointestinal surgery and the aftermath that leaves her with a colostomy. 

I like Buttenwieser’s use of visual details, putting the reader in the room with her, receiving this disappointing news: “‘You’ll have to have your entire rectum and anus removed,’ my surgeon told me over the phone as I sat in my living room, an unread newspaper on the table, cherry blossoms blooming on the tree outside my window.” 

Buttenwieser faces difficulty getting the trash can she needs to dispose of her colostomy bags at work. The humiliating barriers she encounters illustrate the ridiculousness of much “beurocratic red tape.” After her surgery, she struggles with how many details to disclose about her sensitive change in physical status, even to friends. 

Buttenwieser’s candid anecdotes of everyday challenges post-surgery, such as shopping for clothes and dealing with an emergency malfunction of the colostomy bag while out with her small children, show why her new book Guts, set to be released in 2018 by Vine Leaves Press, is likely to be an entertaining and enlightening read. 

Writing Prompt: Think of a time you’ve dealt with “beurocratic red tape” in relation to a medical condition or the medical field. List all of the obstacles you encountered. Can you infuse some humor into the piece, despite the frustrating experience? 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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