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

Abstract

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 chisquare 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.

Barriers in Healthcare for Latinx Patients with Limited English Proficiency—a Narrative Review

“…Recent studies have revealed structural aspects of the American healthcare system which create challenges for Latinx patients. 35,37,38,48 Clinicians and healthcare systems need to change practice patterns that negatively affect Latinx patient trust and satisfaction. 26,49 Many of these changes focus on improving communication and time spent with patients in clinics.…”

“…In a recent survey completed by 294 palliative care physicians, 68% endorsed that limited or no hospice options exist for undocumented immigrant patients. 37 Another 2007 survey showed that undocumented status was associated with lower likelihood of a blood pressure check in the preceding 2 years, lower likelihood of cholesterol check in the past 5 years, and lower likelihood of receiving healthcare information from a doctor. 38 Cultural Traditions.…”

Too Soon or Too Late: Rethinking the Significance of Six Months When Dementia Is a Primary Diagnosis

“…Hospice has now been part of the American landscape of end‐of‐life care for more than forty years. Medicare financing based on diagnosis and prognosis makes hospice accessible to nearly everyone who meets enrollment criteria 3 . The hospice movement, scope of services, eligibility criteria, and financing mechanism were originally developed based on the needs of people with end‐stage cancer.…”

Dying with dignity: how can we deliver values-concordant end-of-life care for immigrant patients in the United States?

“…Emergency Medicaid funding for hospice and palliative care is also limited, with a survey of palliative clinicians in the US finding that hospice was limited or unavailable for over two-thirds of undocumented people in their practice. 7 The limited hospice facilities that accept undocumented immigrants are often overwhelmed with patients.…”