When Karan Shah, a pre-med bioengineering major from Providence, Rhode Island, decided to take the course Literature of Care in fall 2023, he did so with a common doctor-in-training mindset: It was, he reasoned, important to balance technical medical knowledge with empathy. A medical humanities course would round his training.
What he experienced from the course was so much more.
During the semester, his mother, a long-time cancer patient, received a terminal diagnosis. Taking Literature of Care simultaneously, he says, gave him a new perspective on the diagnosis as both a son and a future practitioner. He learned to see patients’ anxieties and support them according to their needs, yes, but he also learned how to better express his own feelings.
The course is taught by Senior Lecturer of English and History of Art Aaron Levy, who weaves in storytelling from the Penn Medicine Listening Lab and dozens of essays and artwork highlighted by Rx/Museum—both of which are humanistic representations of the practice of medicine and the patient experience. The class also collaborates with the Health Ecologies Lab, a group of scholars who research environmental and social influences on health and well-being; that lab is housed at Public Trust in partnership with the School of Social Policy & Practice (SP2). Class sessions begin by listening to a story from the Listening Lab.
The idea: to emphasize listening as an act integral to healing and repair.
“We begin with a communal act of listening, and then turn to the readings, with a respect, gratitude, and openness to perspectives that we might have been previously dismissive of,” explains Levy, referencing the work of sociologist Leah Bassel and her concept of “the politics of listening.” “Much of the work we do in literary studies involves cultivating a critical gaze toward texts and histories. In this class we’re trying to complement that critical sensibility with a more affirmative tendency.”
One goal of the course, he says, is to raise awareness of how patient care can be depersonalized—whether writing abstractly about patients in their medical records or interrupting them to save time—and the consequences of that. The subject matter discussed crosses disciplines from medical anthropology to narrative medicine, challenging students to suspend the certainty of STEM studies and appreciate the nuance and complexity often found in the humanities. Putting studies in practice, they visit Penn Medicine throughout the semester, hearing from patients, providers, and other storytellers at the Listening Lab.
“It’s not accidental that there’s been this turn toward the medical humanities at a moment when many do not feel cared for, including those who do the work of care in society,” says Levy. “It’s against this backdrop of a breakdown in social cohesion and trust, as well as the stresses and inequities of the [COVID-19] pandemic and other recent public health crises, that this course feels especially relevant to students here at Penn.”
Not just coursework; it’s personal
Shah had his final moments with his mother before the semester was over. While taking the course, he recalled patients and caregivers who described regrets about what they wish they’d said, which struck him.
“Luckily, I have not had that thought,” Shah says.
For his final project, Levy suggested Shah write a letter to his mother, keeping in mind stories like “The Aquarium,” by Aleksander Hemon and classmates’ diverse perspectives that surfaced through the course. Shah took the suggestion to heart: He drafted a letter to his mother. He ultimately gave it to her just before she passed.
“There are a lot of things you want to say to your parents, but you sometimes can’t with your [verbal] words, but that letter said everything I wanted to [say] to my mom,” he says, reflecting. “… There were many instances where we read about a terminally ill patient, and they talk about all the anxieties they’re facing, the emotions, and their last wishes if they had children, what they want for their children, and that really helped me put things down on paper and tell my mom, ‘Things are going to be OK. These are my thoughts and emotions and how you must be feeling right now, and I understand.’”
Shah keeps the letter with him, he says. He finds comfort knowing it was what she was reading before she passed away. Since graduating in May, he’s been planning to apply to medical school and study oncology.
“My mom was diagnosed when I was 11 and passed when I was 22,” he explains. "Through this long and humbling experience, I hope to use the empathy I have garnered to truly listen to the wants and needs of each patient from their perspective.”
Nor is Shah the only one to bring personal experiences to the course, deepening their understanding. Micaela Alpert, from Summit, New Jersey, is a fourth-year studying biochemistry, biophysics, and biology with a minor in anthropology, who is also submatriculating in chemistry. She was diagnosed with cancer in middle school and came to Philadelphia for care at Children’s Hospital of Philadelphia (CHOP), which inspired her interest in pediatrics. She took the Literature of Care course to see the patient experience through a different lens—and apply the lessons to her practice as a Penn MERT volunteer and prospective physician.
Alpert wrote her final paper about the role of creative arts in healing, partly inspired by her recent experiences working with a music therapist at CHOP. Twice per week, she joins to listen and perform on piano for patients and caregivers in the hospital atrium. Through this involvement, she hopes to provide an opportunity for others to process their emotions through song.
For her, the course themes underscored a key concept in medical anthropology: the distinction between “illness” and “disease.”
“A disease often references a pathological or physiological basis of a condition,” she says, “and illness is the lived experience. Dr. Levy’s course delved into the human experience beyond the disease, something that isn’t taught in my traditional STEM courses. As someone pursuing a career in medicine, I want to be mindful of integrating both of these components into the clinical care I provide.”
Armaun Rouhi, an alumnus who took the course in spring 2020 as a third-year, grew up with parents who lived with chronic illness. Taking the course, he says, helped him articulate what their experience was like and opened the door to medical humanities.
“What I did not expect was to learn how rich and how much depth there is to this field called the medical humanities—the plays, poems, novels, all about people’s experiences interacting with doctors, with the health care system, and being sick or being patients themselves,” he says. “It was very eye-opening.”
It remains, he says, an academic interest. He joined a research group at Penn after graduating, studying surgical outcomes and patient decision-making. The Literature of Care course, he says, has informed his understanding of why patients make the decisions they do and their values.
“I could easily say it was the most important course I took at Penn, in my four years,” he says. “It really prepared me the most for working with patients.”
Naomi Yu is a third-year neuroscience and cognitive science major from Long Island, New York. The course and case studies they read, she says, brought forward questions of what a physician should be expected to treat. It also brought some clarity to a relationship she forged with a nursing home resident she was paired with three years ago as part of the Penn Alzheimer’s Buddies student club, which matches students with patients living with dementia in nursing homes. She sees him every Sunday.
For her final project, she says, she decided to embark on an effort she calls “The Big Book of Ed”—a documentation of her 92-year-old buddy’s life and his resilience as a nursing home resident for 12 years. The experience brought into focus for her the idea of shared humanity.
“I think taking this class has changed my perspective on many things and is one of the rare classes that has made me a better person,” she says. “I think in some capacity every human being, and especially those looking to go into the health care field, should take a medical humanities class.”
The humanities and care
For Levy, a scholar in the English Department, his interest in medical humanities stemmed from the sort of cross-pollination between departments that’s part of being in an academic community.
Caring for one another, he says, is essential to the functioning of a democratic society and is a relevant pursuit for the humanities.
Levy also teaches the Art of Care in the spring, a first-year seminar spun from the Literature of Care but focused on similar questions, only grounding them in modern and contemporary art. The Literature of Care course, meanwhile, may have finished for the 2024-25 academic year, but will continue again in the fall. The English Department continues to explore ways to support medical humanities.
“We’re trying to uncover the hidden connections between literature and medicine,” Levy says of the course, “and to resist the tendency to view these two disciplines as diametrically opposed. Both are deeply concerned with the human condition and the experience of illness and vulnerability, as well as our shared responsibility to witness and support those amongst us who are suffering.”
