Power of Legacy: Development, Implementation, and Evaluation of a Legacy-Building Program

Key Message : Development, implementation, and sustainable utilization of a multi-component legacy-building program is possible, but few well-documented examples exist. The Legacy Program was designed for diverse patients to engage in meaningful activities to assist patients and families in meaningful memory making.

Abstract: Legacy-building and memory-making are significant concepts in hospice and palliative care. Intentional legacy building at the end of life has the potential to yield important benefits for patients and their families. The Palliative Care team at The University of Kansas Health System discussed forming a program for greater than a decade, however no formal program had been established. In February 2024, two early career palliative care nurses partnered with two experienced palliative care social workers to develop the Legacy Program to fill the gap.
We initially performed a literature search related to legacy-building in collaboration with a hospital librarian. Current research regarding legacy-building is primarily concentrated to the pediatric population and lacks detail on program development, acceptability, and impact. The Legacy Program at the University of Kansas Health System provides tangible legacy-building items and physical experiences to high-risk perinatal, pediatric, adolescent, young adult (AYA), and adult patients across outpatient and inpatient settings.
In this session, we outline how our team built the program, secured funding, tracked data, and developed a referral base for the program. Through selected cases, we will illustrate key factors for patient consideration and present preliminary data on the programs impact on patients and their caregivers. Our goal is to build the evidence-base around the patient, family, and team outcomes related to legacy work and inspire those who want to develop their own legacy program.

References: 1. Foster TL, Dietrich MS, Friedman DL, Gordon JE, Gilmer MJ. National survey of children’s hospitals on legacy-making activities. J Palliat Med. 2012;15(5):573-578. doi:10.1089/jpm.2011.0447
2. Riegel M, Randall S, Buckley T. Healthcare professionals’ knowledge, skills, and role in offering and facilitating memory making during end-of-life care in the adult intensive care unit. Aust Crit Care. 2022;35(5):491-498. doi:10.1016/j.aucc.2021.08.003
3. Timóteo C, Vitorino J, Ali AM, Laranjeira C. Legacy in End-of-Life Care: A Concept Analysis. Nurs Rep. 2024;14(3):2385-2397. doi:10.3390/nursrep14030177
4. Allen RS, Hilgeman MM, Ege MA, Shuster JL, Burgio LD. Legacy activities as interventions approaching the end of life. J Palliat Med. 2008;11(7):1029-1038. doi:10.1089/jpm.2007.0294
5. Boles JC, Jones MT. Legacy perceptions and interventions for adults and children receiving palliative care: A systematic review. Palliat Med. 2021;35(3):529-551. doi:10.1177/0269216321989565