Hospice, palliative care, and care experiences among Medicare beneficiaries with cancer

Palliative care (PC), including hospice, can improve quality of life by helping manage distressing symptoms. PC is underutilized among people with cancer in the United States. We studied whether (1) sociodemographics and illness burden were associated with receipt of PC, and (2) whether PC use was related to self-reported care experiences.

Using Surveillance, Epidemiology, and End Results (SEER)-Consumer Assessment of Healthcare Providers and Systems (CAHPS) data, we analyzed illness burden (using the SEER-CAHPS Illness Burden Index [SCIBI]), race/ethnicity, and self-reported care experiences in three cancer cohorts: those receiving hospice (with or without other forms of PC); PC encounters without hospice; and no PC. We included fee-for-service and Medicare Advantage beneficiaries with cancer (n = 37,025) diagnosed 2007-2017, surveyed 2007-2017, and followed up to five years post-diagnosis (through 2019). Multivariable survey-weighted logistic regression models adjusted for clinical characteristics, social determinants of health (SDoH) (dual enrollment in Medicare and Medicaid; neighborhood poverty; education; language), demographics, and clinical characteristics.

Among 37,025 Medicare beneficiaries with cancer, 11.1 % received hospice (with or without PC) and 7.4 % received PC only. Nearly 30 % of the sample died within five years of diagnosis; fewer than one-third of decedents received hospice. Factors associated with receiving hospice included increasing age, non-Hispanic ethnicity, American Indian/Alaska Native and multiracial identities, living in higher-income neighborhoods, survey-completion proxy assistance, fair/poor general health, advanced stage at diagnosis, and more illness burden. Independent predictors of PC encounters included age 75-79, female identification, no dual enrollment, no proxy assistance, and more illness burden. Differences in care experience associated with hospice or PC use were shown for two care experience measures: doctor communication scores and doctor rating scores were higher among beneficiaries who received neither hospice nor PC relative to beneficiaries who received hospice.

Variability in hospice and PC receipt across sociodemographic characteristics suggest the continued need to ensure equitable service provision. Worse doctor communication scores associated with hospice or PC encounters suggests a potential avenue for improving care experiences.