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

Background — 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.

Design — A retrospective cohort study analyzing population-based health care data from 2010 to 2018.
Setting/Subjects: The study population included AYAs aged 15–39 who died in Ontario, Canada, from nonmalignant life-limiting illnesses during the study period (n = 2313).

Measurements — 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.

Results — 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%, p < 0.0001) and emergency department visits (17% vs. 27% versus 21%, p = 0.0091) when compared to generalist PC and no PC, respectively.

Conclusions — 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.