End-of-Life Intensity for Adolescents and Young Adults With Cancer: A Californian Population-Based Study That Shows Disparities

Abstract

Purpose: Cancer is the leading cause of nonaccidental death among adolescents and young adults (AYAs). High-intensity end-of-life care is expensive and may not be consistent with patient goals. However, the intensity of end-of-life care for AYA decedents with cancer—especially the effect of care received at specialty versus nonspecialty centers—remains understudied. Methods: We conducted a retrospective, population-based analysis with the California administrative discharge database that is linked to death certificates. The cohort included Californians age 15 to 39 years who died between 2000 and 2011 with cancer. Intense end-of-life interventions included readmission, admission to an intensive care unit, intubation in the last month of life, and in-hospital death. Specialty centers were defined as Children’s Oncology Group centers and National Cancer Institute–designated comprehensive cancer centers. Results: Of the 12,938 AYA cancer decedents, 59% received at least one intense end-of-life care intervention, and 30% received two or more. Patients treated at nonspecialty centers were more likely than those at specialty-care centers to receive two or more intense interventions (odds ratio [OR], 1.46; 95% CI, 1.32 to 1.62). Sociodemographic and clinical factors associated with two or more intense interventions included minority race/ethnicity (Black [OR, 1.35, 95% CI, 1.17 to 1.56]; Hispanic [OR, 1.24; 95% CI, 1.12 to 1.36]; non-Hispanic white: reference), younger age (15 to 21 years [OR, 1.36; 95% CI, 1.19 to 1.56; 22 to 29 years [OR,1.26; 95% CI,1.14 to 1.39]; ≥ 30 years: reference), and hematologic malignancies (OR, 1.53; 95% CI, 1.41 to 1.66; solid tumors: reference). Conclusion: Thirty percent of AYA cancer decedents received two or more high-intensity end-of-life interventions. In addition to sociodemographic and clinical characteristics, hospitalization in a nonspecialty center was associated with high-intensity end-of-life care. Additional research is needed to determine if these disparities are consistent with patient preference.