A Tale of 2 Experiences: Navigating End-of-Life Care With a History of Incarceration.

Abstract

Background: The adverse health effects of incarceration are well-documented, affecting individuals throughout their life course. However, the influence of a history of incarceration on end-of-life (EOL) experiences remains unexplored. This study aims to examine how prior incarceration affects individuals' experiences and care needs as they approach the EOL.

Methods: Leveraging the Health and Retirement Study, we conducted secondary analyses on 1 710 individuals who participated between 2012 and 2018. Through retrospective cohort analysis, we explored the association between incarceration history and EOL care, focusing on pain and symptom burden.

Results: Analyses showed that individuals with a history of incarceration experienced significantly higher levels of pain (65% reported "moderate" or "severe" pain) compared to nonincarcerated individuals (50%; adjusted odds ratio = 1.45, 95% confidence interval [CI]: 1.22-1.71, p < .001). Additionally, the symptom burden index revealed that formerly incarcerated individuals had a higher average symptom score (2.8 vs 2.1; β = 0.7, 95% CI: 0.5-0.9, p < .001), indicating a greater range of symptoms in their final year of life. These disparities persisted after adjusting for demographic, health, and socioeconomic variables.

Conclusions: This study reveals that a history of incarceration significantly affects EOL experiences, with formerly incarcerated individuals facing higher levels of pain and a greater symptom burden compared to nonincarcerated individuals. This underscores the need for tailored palliative care to address the unique needs of this vulnerable population. This research highlights a critical area for intervention and calls for healthcare systems to adapt their practices to better serve those with incarceration histories.