Alumna publishes first-of-its-kind study on death literacy in the U.S.

Karen Nelson, PhD, RN, an alumna of the UCLA Joe C. Wen School of Nursing’s PhD program, has published her dissertation work in OMEGA – Journal of Death and Dying. 

The first-of-its-kind to measure death literacy in the U.S., the study leverages the Death Literacy Index (DLI), a survey tool designed to assess a person’s knowledge and skills in understanding and acting upon end-of-life and death care options. The study found that while there was general awareness of support resources and access to emotional support, significant gaps in practical caregiving skills and factual knowledge of end-of-life care was present. 

Dr. Nelson’s findings provide a road map for planning community-based interventions to improve end-of-life care, as well as a benchmark for evaluation.

“Death and dying are experiences that touch every family, yet many people feel unprepared to navigate them,” said Dr. Nelson. “Strengthening death literacy through community education can help normalize conversations about end-of-life care and build greater confidence in supporting loved ones.”

Dr. Nelson presented her findings in the Netherlands at the 3^rd International Death Literacies Symposium and in San Marcos at the Shiley Haynes Institute for Palliative Care National Symposium for Academic Palliative Care Education and Research. As a consultant in end-of-life care, Dr. Nelson’s work includes implementing the Last Aid curriculum in the U.S. and developing community capacity for improved death literacy.

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