It’s a subject that families often find too emotional to discuss. But experts say it’s an essential one to have in order to make more informed decisions on one’s final wishes. Lindy Davidson, associate dean for curriculum & instruction in the Judy Genshaft Honors College and instructor of medical humanities, has been teaching Ethics at the End of Life and Narrative Medicine for several years, among other classes. Individually, they satisfy the Honors College general education curriculum requirement for Ethical Reasoning and Civic Engagement and Arts and Humanities, respectively. Davidson’s courses typically fill rather quickly. But since COVID-19, she has noticed more students have enrolled because of a genuine interest in the subject.
“In my Narrative Medicine class this fall, several students gravitated towards end-of-life issues in their final projects. Many of them explored their personal experiences of caring for family members by producing narratives that highlight the challenges, complexities and also togetherness that often exist among family members, patients and medical caregivers,” Davidson said. “I believe the pandemic has shown us all how fragile our lives are, and it has also given young adults more time at home with older family members. Perhaps these factors have increased students’ interest in end-of-life issues.”
This topic has especially resonated with Amanda Jakuboski, a second-year biomedical sciences student. The mother of one of her good friends at USF is in a coma on a ventilator due to COVID-19.
“End-of-life isn’t something that we expect to deal with at this age, but her story has certainly put things into perspective for myself and others that it could be any of our loved ones next,” Jakuboski said. “It’s something that everyone wants to avoid, but the pandemic is a reminder that it may be closer than we could have ever imagined, and we may need to start talking about it sooner than we would have otherwise.”
Davidson says end-of-life decisions extend well beyond “do not resuscitate.” In her Ethics at the End-of-Life class, she teaches students about the reality of extreme life-saving techniques, the importance of informed surrogate decision-making and the cultural and spiritual perspectives that are often overlooked in end-of-life situations. These courses and related opportunities are part of a medical pathway program funded by a grant from the National Endowment for the Humanities.
Many of the students enrolled in Narrative Medicine aspire to medical careers. Davidson teaches them that when doctors lose sight of the patient’s story, they lose the humanity of medical practice. For their year-end project, students were required to tell a story inspired by their own personal experiences and share it in a public forum.
“I want students to see their projects as more than a graded assignment because their work is powerful and has the ability to do good. I realized a few years ago that I may be the last person to read the inspiring and time-consuming projects created by my students, so I decided to stop being an academic cul de sac,” Davidson said. “Now, I encourage my students to produce works for the public eye, and I challenge them to submit their pieces to conferences, publish them online and look for other outlets. I prefer to see myself as a conduit of their work as opposed to the final stop.”
This semester, some of the projects included the launch of a new podcast that features a physician discussing end-of-life issues, a memory book created as a guide for NICU parents whose babies are facing death and a script to guide caregivers in assisting family members who encounter difficult situations. Jakuboski wrote and illustrated a children’s book about dementia.
“Grandma’s Refrigerator Door” was inspired by her relationship with her old next-door neighbor, Sheila, who was like a grandmother to her and a regular babysitter. Sheila suffered from Alzheimer’s disease and eventually became unable to recognize the loved ones in the photos that covered her refrigerator. Jakuboski said it was important for her to write the book because too often adults fear discussing the issue with their children, which makes the process even more difficult.
“I knew this class was one I wanted to take because I am passionate about health care and hope to attend medical school in the future. As pre-med students, we often get caught up in biology and organic chemistry and we forget why we want to be doctors in the first place,” she said.
Jakuboski hopes to soon publish “Grandma’s Refrigerator Door” on digital platforms and eventually have it printed by a professional publisher.