UTMB School of Public and Population Health's latest PhD graduate explores how medical practices and societal expectations shape our experiences of dying
The University of Texas Medical Branch (UTMB) School of Public and Population Health (SPPH) proudly celebrates the accomplishments of Dr. Johnna Wellesley, who recently defended her doctoral dissertation, "The Dying Shame: An analysis of sociocultural and clinical practices producing shame and stigma in medicalized death."
Dr. Wellesley's research examines how contemporary medical practices and cultural expectations create environments where dying can become a source of shame, stigma, and social isolation. Her work offers important insights for healthcare professionals, ethicists, and anyone interested in improving end-of-life care.
A Journey of Discovery
Wellesley, who entered the field of bioethics after a successful career in brand strategy, was drawn to the Institute for Bioethics & Health Humanities (BHH) within SPPH following personal experiences with loss.
"I was profoundly moved by the experience I had of my own parents dying," Wellesley explains. "Both of my parents died of cancer, and while their experiences with the disease and their deaths were very different, it revealed a significant complexity that patients and families must go through. As a result, I felt motivated to do something with my career that, for me personally, was more meaningful and authentic."
This personal connection led Wellesley to explore clinical pastoral care before pursuing a Master of Theological Studies at Duke University with a concentration in theology, medicine, and culture. Her path eventually brought her to UTMB's renowned bioethics program.
Emotional Regimes and Identity at End-of-Life
Wellesley's dissertation examines "emotional regimes" surrounding death and dying—the social scripts and expectations that govern how people express themselves during these profound life transitions.
"I argue that dying in effect can produce a real sense of social awkwardness and social rejection," says Wellesley. "It can be a disquieting isolation of the dying—and even for the grieving, who we can find difficult to be around."
Her research investigates this phenomenon across three contexts: emotional regimes arising from the medicalization of death, practices associated with cause of death determinations, and illness subjectivities of people with terminal cancer. Throughout this work, Wellesley explores how shame and stigma impact the ongoing formation of identity during the dying process.
"These are forms of shame and stigma that don't just stop when the person dies," she notes. "We are custodians of their memory and legacy, and we carry with us the stories of others. Shame can build inside of families. Certain ways of dying can become deeply embedded secrets, sites of shame and stigma."
Clinical Implications
Dr. Wellesley's research holds significant implications for clinical practice. She advocates for approaches that emphasize relationality and “shame sensitivity” in healthcare settings.
"I argue for different ways of approaching these kinds of situations," Wellesley states. "To really lean into the relationality of people and patients, which doesn’t always take traditional forms, to invite and support family members with emotional and consequential decision-making.”
Her work also highlights how institutional environments can contribute to feelings of shame or alienation. "The hospital environment itself may be very intimidating to people, perhaps those who've never needed to be in a hospital," she observes. "They might not feel welcome, seen, or respected inside of these state-of-the-art, highly technological centers that implicitly convey hope and possibility for recovery."
Endings Matter
When asked to distill her years of research into key takeaways, Dr. Wellesley offered two powerful words: "Endings matter."
"How our lives come to an end really matters," she elaborates. "It matters for patients, and it matters psychologically, for those who grieve."
Dr. Wellesley will continue her academic journey as a clinical ethics postdoctoral fellow at Weill Cornell Medicine in New York, where she will train in clinical ethics consultations while continuing her research. Her future work will explore the ethical dimensions of artificial intelligence in end-of-life contexts, including emerging technologies related to the digital afterlife industry.