Hospice Access and Scope of Services for Undocumented Immigrants: A Clinician Survey.

Objectives: To characterize clinician experiences of hospice access and scope of services for undocumented immigrants. Background: The 10.5 million undocumented immigrants in the United States are not covered by Medicare's hospice benefit and are at high risk for being uninsured. Limited data are available regarding hospice services for this population. Setting/Subjects: Two hundred ninety-four interdisciplinary palliative care clinicians from across the United States. Measurements: Participants completed a web-based survey regarding hospice access and scope of services for undocumented immigrants in their location. We used simple frequencies to report clinician responses and chi-square analysis to evaluate associations between response and location. We performed rapid qualitative analysis of free-text responses to identify common limitations in scope of services. Results: A majority of clinicians (68%) perceived that access to hospice was limited or unavailable for undocumented immigrants in their location, and among respondents who provided data regarding hospice scope, 38% reported that services provided to undocumented immigrants were limited compared to those provided to other patients. Reports of restricted access and scope varied by region, and those in large metropolitan areas were more likely to report restricted scope of care than those in smaller towns (43% vs. 28%; p = 0.03). In our qualitative analysis of free-text responses, common limitations in hospice scope included reduced access to medications and equipment, inability to access inpatient hospice, inadequate translation services, reduced staffing, and restricted duration of services. Conclusions: Undocumented immigrants may face barriers in accessing comprehensive hospice services. Public policy changes that improve access to hospice may improve end-of-life care for undocumented immigrants.

Duke Scholars

Author Nathan Adam Boucher Sanford School of Public Policy

Author Sophia Kustas Smith School of Nursing

Author Kimberly Sherell Johnson Medicine, Geriatrics and Palliative Care