Everyone has a story to tell. In medicine, obviously, the stories patients tell—of their symptoms, of their family medical history, of their life circumstances—offer critical context that helps doctors provide compassionate, effective care and treatment.
These stories also help patients make sense of their illness or disease and its effects on their lives and the lives of their loved ones—effects that can be difficult to discuss because they touch on fraught issues like the limitations of living with a chronic condition, losing one’s independence, and mortality itself. Vermont Fellow Jacob Reibel is facilitating those difficult conversations with patients and their families in the Burlington area, and recording them for posterity to help people better understand the impact of chronic illness on patients, their families, and their caretakers.
“Chronic illness can teach us how to set priorities and find meaning in our lives, and I hope my project will inspire other medical students and practitioners to listen closely to the stories of their patients, get to know them, and learn from what they are experiencing,” says Reibel, a medical student at the University of Vermont (UVM). “I also hope it will continue to encourage patients to share their stories with the people around them and normalize the human experience of illness. It is hard to know in advance how one person’s story will affect or resonate with others, but there is no doubt it will open new dialog.”
Indeed, for one woman being treated for breast cancer, participating in Reibel’s project provided a window into just how strong and capable her son is—which was no doubt a great comfort given her uncertain future.
“Her son had just finished his first semester of college and they sat down with me to record a conversation on his second day of winter break,” says Reibel. “Caring for a mother with a serious illness makes an adolescent grow up quickly, and I saw the affectionate way that she watched him as he spoke, attentively listening to him articulate his experience of their journey together. After the interview, his mother wrote to me, ‘I was so pleased to see that my son can truly handle what comes his way, because he has.’”
The seeds of Reibel’s project were sown by Virginia Fry, the director of the Hospice and Palliative Care Council of Vermont and the bereavement coordinator for Central VT Home Health & Hospice. Fry works with children in palliative care or who have terminally ill family members, helping them cope through creative expression such as drawing, telling stories, or clay sculpture. Reibel was inspired by a lecture Fry gave in which she shared the story of a young child in palliative care who wrote a direct, moving letter to medical providers to help them understand her experience and what she wanted at the end of her life.
Reibel conceived a project modeled on NPR’s StoryCorps, which collects and shares “humanity’s stories” in order to foster connection and understanding among people in a diverse world. Like StoryCorps, Reibel facilitated conversations between a pair of participants with an existing relationship—for instance, a parent and child or domestic partners. Initially, he planned to focus only on collecting the stories of pediatric palliative care patients and their families or caregivers at the UVM Children’s Hospital, but later expanded the project to include people of all ages. You can hear portions of the conversations and interviews Reibel has recorded on the website he created for his project.
Reibel says the stories he has heard while working on his project have made an impression on him that he will carry into his practice as a physician.
“They will remind me that every person’s experience of illness is unique, but that all of our stories share common themes that connect us,” he says. “A serious diagnosis is very disruptive but can create a new perspective from which to think about life. When I care for my patients, I will listen closely to be sure I understand their priorities before we make medical decisions together.”
Reibel says he is grateful for the opportunity the Fellowship gave him to meet like-minded people putting their passion into action to improve the lives of others.
“I’m bowled over by how motivated and encouraging all of the other Fellows are from across the medical, law, and engineering schools of Vermont and New Hampshire,” Reibel says. “Although our interests are broad, we share a common goal to engage and help the community, and it has been invigorating to share ideas and collaborate together. The Schweitzer Fellowship attracts people who have passion—and a mission.”