In an intensive care unit in rural Kentucky, a multigenerational tobacco farming family gathers around its dying patriarch, “Uncle Burley.” They’re agonizing over his condition.
Earlier, his son, Danny, and nephew, Nathan, decided to take him to the nearest hospital when they couldn’t wake him up. Burley is put on life support in the intensive care unit, having slipped into “what doctors call a coma instead of dying,” writes Wendell Berry, winner of a National Humanities Medal, in this short story, titled “Fidelity.”
The family’s distress intensifies. “Loving him, wanting to help him, they had given him over to ‘the best of medical care’ — which meant, as they now saw, that they had abandoned him.” Later, Danny kidnaps his father and takes him to a favorite spot in the woods that both men love. When police begin an investigation, readers might find themselves rooting for Burley’s family.
This clash of values is the essence of Berry’s compelling story, part of a collection of short stories by the same author. It’s also the literary choice for Johns Hopkins Medicine’s new, yearlong program, One Health Care Community One Book, which will discuss the story and its themes in meeting areas across the institution.
The kickoff event takes place on Nov. 12 at 5 p.m. in the hospital’s Chevy Chase Bank Auditorium. Mary Berry, the author’s daughter and executive director of The Berry Center, will host an “open conversation” about her father’s piece (see sidebar).
Additional talks will take place on Dec. 4 and Jan. 31 at noon.
Building on Success of AfterWards to Reduce Burnout
The upcoming book conversations are an extension of AfterWards, a program created in 2014 at Johns Hopkins Children’s Center by writer Lauren Small, a part-time assistant professor in pediatrics, and Benjamin Oldfield, who was a resident in medicine and pediatrics at the time. Small’s appointment — the first of its kind at the Children’s Center — focuses on teaching humanities and fostering patient- and family-centered care.
The novelist, who has a doctorate in comparative literature, is attuned to physicians’ stressors: Her father, brother and daughter are doctors, as is her husband, Donald Small, director of Johns Hopkins’ Division of Pediatric Oncology. Small has also written two novels.
AfterWards attempts to relieve caregiver burnout by stimulating conversations about the challenges of taking care of patients and by recalling unforgettable, touching moments in the practice of medicine.
“I loved the idea of reading and writing in the context of a medical institution,” says Small. To date, she has led more than 50 sessions of AfterWards. Each meeting consists of a discussion of a piece of literature or art with a medical theme, followed by writing based on a prompt and shared reflection. One meeting, for example, featured paintings by Frida Kahlo to open a discussion about coping with pain.
In another session, the group discussed W.H. Auden’s poem Surgical Ward in terms of what it is like to bear witness to suffering. Yet another gathering brought employees together to watch an Amy Winehouse video, in which she sings songs she wrote about her drug addiction. Along with discussing the lyrics, the group talked about how they care for patients with addictions.
The hourlong meetings take place from 5:30 to 6:30 p.m. each month at various locations around The Johns Hopkins Hospital. They include a facilitator — usually Small — as well as nurses, doctors, physical therapists, residents, social workers and students, some of whom act as guest presenters. The presenter introduces a topic or piece of art and raises questions about its content/meaning.
At the end of each session, the facilitator offers a writing prompt related to the topic covered (e.g., delivering bad news). Participants write privately but are encouraged to share reflections about their clinical experiences.
Being able to process these experiences through art, literature, music and writing can be powerful, says Small. “It’s an opportunity to hear from colleagues they don’t normally encounter. The discussions inspire empathy and reflection through storytelling — aka narrative medicine — and advance the joy of medicine mission.”
Building on the success of these small gatherings, Small is on a mission to bring the entire Johns Hopkins Medicine community together, in different venues, for a yearlong discussion of one piece of literature.
Modeled after similar programs, such as One Maryland One Book, the idea behind One Health Care Community One Book, she says, is to engage all 41,000 members of the Johns Hopkins Medicine community. “It’s AfterWards on steroids.”
Gleaning Insights About Patients and Self-Care
Among the AfterWards “regulars” is Ivor Berkowitz. The pediatric anesthesiologist says he’s been delighted by the program’s ability to reawaken his interest in what he calls “medical humanities.”
“These discussions give us a texture we can use to expand our understanding of the whole breadth of medicine — how medicine affects families and societies,” he says.
Many years ago, while visiting London, Berkowitz found himself mesmerized by a painting at the Tate Museum. The Doctor, painted in 1890 by Luke Fildes, depicts a physician observing a pale young child who is lying across a makeshift bed of two chairs as his distraught parents look on.
“I couldn’t stop thinking about it,” Berkowitz recalls. “Here’s this doctor who — to me — epitomizes what being a doctor is all about: He’s being present for the family, even as his patient’s condition turns dire. This was before the days of the ICU. The doctor looks firm, worried. He didn’t have antibiotics, IV drugs or a ventilator, but he doesn’t leave.”
On his return home, Berkowitz bought a framed print of the painting to hang in his office. “It continues to inspire me,” he says. For one AfterWards meeting, he took the painting off his wall and shared it with the group. Former pediatric residency program director Janet Serwint, who recently retired, led a lively discussion about the work. The theme was “Being Present” and the writing prompt was, “Write about a time you felt particularly present with a patient.”
But AfterWards isn’t just for seasoned employees such as Berkowitz, who have encountered many emotionally draining scenarios.
Juliet Garlow, a recent graduate of the Johns Hopkins University School of Nursing, is about to embark on her career as a labor and delivery nurse. One day last year, an email about AfterWards caught her eye. “I was looking for something like that because I had been trying to deal with the emotional impact of assisting women in labor,” she says.
After one long night working as a birth doula, Garlow came home at 4 a.m. “I was feeling overwhelmed and wanted to write about it but was too tired and couldn’t find the words, so I drew a picture,” she says. “To be able to look back at that … it’s a gift to myself.”
She shared that experience at an AfterWards meeting and led a discussion about a story in the comics anthology Graphic Reproduction, edited by Jenell Johnson. Johnson’s comic “Present/Perfect,” depicts the roller-coaster experience of infertility and unsuccessful in vitro fertilization procedures.
In the discussion that followed, everyone was invited to draw their own cartoon to capture their emotions about a particular challenge.
“It’s lovely to be with people in various roles across specialties to share personal experiences in patient care,” says Garlow. “It energized me to talk about mine. These meetings build my ability to become more empathetic and part of a larger community.”
Garlow looks forward to the upcoming One Health Care Community One Book kickoff event. “I’d read Wendell Berry as an undergrad,” she says, “but I saw him only through his writings about nature and the environment. I’m interested in seeing this other side of him.”
Berkowitz considers the One Book project a natural offshoot of AfterWards. “Bringing people together from across disciplines provides fascinating perspectives,” he says. “Art has an impact on a practitioner. It’s how I feel about nature: It provides a kind of portal to appreciate life’s beauty and challenges.”
One Health Care Community One Book is sponsored by AfterWards, The Center for Medical Humanities & Social Medicine, and the Program in Arts, Humanities & Health. Learn more at:
hopkinsmedicalhumanities.org/one-health-care-community-one-book/