Palliative Care Education in an Undergraduate Curriculum

Kulp

by David Kulp, 20C Interdisciplinary Studies

When I began my research just over a year ago, I hadn’t imagined my honors thesis project to be as relevant and as applicable as it is today. For many years now, I’ve developed a budding interest in pediatric critical care and palliative care, in large part due to my early exposure to mental health interventions at the end of life through my parents’ professions in healthcare. Shortly after arriving to Emory and learning further about the complexities of ethics and medical care, I developed an interest at the nexus of medicine and the humanities, focused on the delicacy of end of life decision-making in pediatrics.

Though it seems like a depressing and challenging topic to be interested in as a young adult and budding college graduate, given my parents’ vocations in pediatrics and psychiatry-oncology it was a clearly a natural and innate passion—of helping the underserved and the vulnerable through my academic and professional pursuits. As I grew through my coursework to better understand the challenges and nuances of medical care of adolescents and young adults with chronic illness, I developed an interest in integrating palliative care in an undergraduate setting. How do we foster supportive spaces to have challenging conversation about death? How do we proactively engage young adults to discuss decision-making—decision-making that will eventually no longer be theoretical, but inherently practical for themselves and their loved ones? And so, the foundation for my honors thesis project came to fruition.

Western culture proliferates the myth that conversations about palliative care and death can only occur at the end of life. Typically, such communication does not occur until it is too late—after life-limiting conditions present. However, dialogue about these difficult topics proves to be a crucial component of development in emerging adulthood (18-23-years old). Emerging adults are not immune to terminal illness, and many eventually become substituted decision-makers for their loved ones, forcing them to confront end-of-life decision-making. To decrease anxiety and fear about the end of life, the American Academy of Pediatrics and World Health Organization recommend having conversations with terminally ill children and emerging adults about decision-making as soon as they are developmentally and emotionally ready. However, despite these statistics and recommendations, end- of-life conversation is largely avoided with healthy emerging adults.

My honors project assesses the efficacy of a palliative care curriculum recently piloted for undergraduates at Emory University. Early interventions in educational settings—relying on resources typically used in advance care planning—may prove important in empowering healthy emerging adults to make well-informed decisions about their end-of-life care. While there is currently a wealth of literature showing the importance of end-of-life conversations with young adults suffering from terminal illnesses, the research—quantitative and qualitative—about communication with healthy emerging adults is lacking. This honors thesis bridges that gap by gauging both the pragmatic awareness of planning tools, and the effectiveness of an undergraduate curriculum focused on humanistic discussions about death.

With the COVID-19 crisis occurring in the United States and around the world, this thesis is remarkably, and tragically, applicable. As a child and adolescent, there was regular conversation about morbidity and mortality around the dinner table. However, these conversations were yet again once removed, in that I never had personal contact with individuals in their narratives. The dialogue, rather, involved rational and deliberative thought and analysis around the tragic deaths of their patients, of other people, in distant places. Now, that is no longer the case. These conversations are innately personal, challenging, relevant, and necessary.

The Fox Center for Humanistic Inquiry Humanities Honors Fellowship was immensely helpful in facilitating this research over the course of the spring semester. Thanks to the interdisciplinary work and mentorship of Dr. Walter Melion, Keith Anthony, Colette Barlow, and Amy Erbil, I had ample fellowship, funds, and space to further my research. The opportunity to engage with experts across the university and with fellow scholars was an unparalleled experience. I have benefitted deeply from the generosity of the FCHI. And as I near graduation, look towards graduate and professional school, and begin the next phase of my life and my research, I look forward to staying connected with the Center and the scholars who I’ve had the opportunity to connect with through it.

David Kulp is a senior majoring in Interdisciplinary Studies on the pre-medicine track, originally from Potomac, MD. His research focuses on the intersection of palliative care medicine, thanatology, and education. David aims to develop an undergraduate curriculum that focuses on the foundations of palliative care and its unique emphasis on a biopsychosocial-spiritual approach in clinical practice. Destigmatizing death through improved education in emerging adult populations may assist in their ability to act as proxy decision-makers for their loved ones and eventually themselves. An undergraduate course is ideally positioned in the life of an emerging adult to discuss future wishes and begin to catalyze a shift in the perspective of society towards the end-of-life. David was inspired to pursue this topic after studying ethics related to vulnerable pediatric populations, and particularly after interning in the Harvard Program in Neonatology at Boston Children’s Hospital on a project concerning neonatal care at the margin of viability.

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