Barriers to Hospice and Palliative Care Utilization Among Adolescent and Young Adult Cancer Patients Living in Poverty

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PROJECT SUMMARY Cancer is the leading illness-related cause of death for adolescents and young adults (AYAs) aged 15-39. The vast majority of these young patients die after receiving intensive measures in the last month of life. This may in part be driven by patient and family preferences, a response provoked by young lives ending too soon. However, data from privately insured AYA patients and those publicly insured by Medicaid provide compelling early evidence that poverty is a source of EOL disparities in this vulnerable population. More work is needed to establish the role of poverty in EOL care choices such as hospice and palliative care among AYA patients, and to understand the best models for EOL care delivery for AYA patients with limited socioeconomic resources. The overarching goals of this application are to answer the questions: To what extent is poverty a barrier to hospice and palliative care utilization among AYA patients? What is the optimal model for EOL care delivery for AYA patients living in poverty? The proposed study will draw on the existing robust infrastructure of the Palliative Care Research Cooperative Group (PCRC) and partner with three geographically, racially, and ethnically diverse sites with high rates of urban and rural poverty. The proposed study will: Aim 1: Examine the extent and determinants of socioeconomic disparities in use of hospice and palliative care among AYA patients at the EOL. This project will (a) develop a cohort of AYA decedents from 2013-2016 at 3 PCRC sites; (b) evaluate use of hospice and palliative care as well as location of death among cohort patients using medical records; (c) examine relationships between socioeconomic status, defined by census tract income and insurance data; race/ethnicity; use of hospice and palliative care; and location of death, adjusted for geographic hospice accessibility. Aim 2: Explore caregiver experiences and decision-making about location of EOL care and involvement of hospice and palliative care. This project will (a) identify surviving family caregivers of the cohort’s AYA decedents and (b) conduct semi-structured interviews to evaluate decision-making about use of palliative care and hospice and about location of death, including barriers to hospice/palliative care use and home death. Aim 3: Evaluate quality of care near death among AYA patients as a function of socioeconomic status and hospice and palliative care use. Investigators will use a structured questionnaire-based interview among surviving family caregivers to evaluate the quality of care near death as a function of hospice and palliative care use; socioeconomic status, defined by income, wealth, and employment data; family structure; and age. AYA patients are at risk for high use of intensive measures near death, and those living in poverty appear to be especially vulnerable to suboptimal supportive care at the EOL. This study will evaluate the nature and determinants of hospice and palliative care use among AYA patients living in poverty, as critical preliminary data for interventions designed to improve EOL care delivery in this young population.