Palliative Care Involvement and End-of-Life Care Intensity Among Adolescents and Young Adults with Nonmalignant Illnesses: A Population-Based Cohort Study in Ontario, Canada.

Abstract

<b><i>Background:</i></b> Adolescents and young adults (AYAs) with life-limiting illnesses face unique challenges and often receive late or no palliative care (PC). This study examines the correlation between PC involvement and the intensity of end-of-life care among AYAs with nonmalignant life-limiting illnesses. <b><i>Design:</i></b> A retrospective cohort study analyzing population-based health care data from 2010 to 2018. <b><i>Setting/Subjects:</i></b> The study population included AYAs aged 15-39 who died in Ontario, Canada, from nonmalignant life-limiting illnesses during the study period (<i>n</i> = 2313). <b><i>Measurements:</i></b> PC involvement was defined as at least one encounter with a PC provider. End-of-life (EOL) care intensity was measured using rates of emergency department visits, hospitalizations, intensive care unit admissions, and mechanical ventilation in the last 30 days of life. <b><i>Results:</i></b> Of the 2313 AYAs studied, 37.5% had at least one PC encounter during their lifetime. Specialist PC delivered ≥90 days before death was associated with lower intensity of EOL care, including fewer intensive care unit deaths (17% vs. 34% versus 31%, <i>p</i> < 0.0001) and emergency department visits (17% vs. 27% versus 21%, <i>p</i> = 0.0091) when compared to generalist PC and no PC, respectively. <b><i>Conclusions:</i></b> AYAs with nonmalignant illnesses received high EOL care intensity and had a high percentage of death in acute care settings. Specialist PC involvement was associated with improved EOL care outcomes compared with generalist and no PC.