Trends in place of death in adolescents and young adults dying from cancer in the US, 2003-2019.

Abstract

12029 Background: Adolescents and Young Adults (AYAs) face unique social challenges in navigating care at end-of-life (EOL). Place of Death (PoD) is an important determinant of patient and caregiver preference, access to home-based supportive care, and cost of caregiving at EOL. We sought to describe disparities in PoD in AYAs who died from cancer between 2003-2019. Methods: We used deidentified death certificate data via the CDC Wonder database. We included decedents aged 15-44 years with an underlying cause of death from cancer (through ICD codes) from 2003-2019. We stratified findings by age, race/ethnicity, sex, cancer site, and urban/rural metro status. We classified PoD as (1) medical facility (2) nursing home (3) home, or (4) hospice facility. Odds ratios (OR) for the association between PoD and geographic region were calculated using multinomial regression, adjusting for year of death. Results: We included 301,886 AYA deaths from cancer (53.9% female, 15.6% non-Hispanic Black, 18.4% Hispanic, 15.6% rural, 28.6% breast, 19.9% colorectal, 18.4% lung, 16.9% brain, 16.2% leukemia). From 2003-2019, deaths in a medical facility reduced from 11,579 (52.7%) to 7,952 (49.5%), home from 8,630 (39.3%) to 6032 (37.5%), and in a hospice facility increased from 152 (0.7%) to 2,245 (14.0%). Compared with older adults (>45), AYAs were 42% and 37% less likely to die at home or in a hospice facility than a medical facility. Within AYAs, similar trends were noted for Hispanic and non-Hispanic Blacks when compared to non-Hispanic Whites, and rural residents when compared to urban residents. AYAs with leukemia were most likely to die in a medical facility and least likely in hospice, brain cancer most likely to die at home or in a nursing facility, while colorectal and breast cancers had equal uptake of hospice. Conclusions: AYAs have lower hospice uptake at EOL with notable sociodemographic, geographic and disease-site specific variation. These data likely reflect complex treatment planning and care access/preference at EOL. Dying at home may be unattainable for AYAs, unless they are able to afford help or have family who are willing to be caregivers. Future work investigating whether the offerings of hospice meet the basic care needs of AYA with cancer at EOL is necessary. [Table: see text]