"Are They Saying It How I'm Saying It?" A Qualitative Study of Language Barriers and Disparities in Hospice Enrollment.

CONTEXT: Language barriers contribute significantly to disparities in end-of-life (EOL) care. However, the mechanisms by which these barriers impact hospice care remains underexamined. OBJECTIVES: To gain a nuanced understanding of how language barriers and interpretation contribute to disparities in hospice enrollment and hospice care for patients with limited English proficiency. METHODS: Qualitative, individual interviews were conducted with a variety of stakeholders regarding barriers to quality EOL care in diverse patient populations. Interviews were audiorecorded and transcribed verbatim. Data were coded using NVivo 11 (QSR International Pty Ltd., Melbourne, Australia). Three researchers analyzed all data related to language barriers, first individually, then in group meetings, using a grounded theory approach, until they reached consensus regarding themes. Institutional review board approval was obtained. RESULTS: Twenty-two participants included six nurses/certified nursing assistants, five physicians, three administrators, three social workers, three patient caregivers, and two chaplains, self-identifying from a variety of racial/ethnic backgrounds. Three themes emerged regarding language barriers: 1) structural barriers inhibit access to interpreters; 2) variability in accuracy of translation of EOL concepts exacerbates language barriers; and 3) interpreters' style and manner influence communication efficacy during complex conversations about prognosis, goals of care, and hospice. Our theoretical model derived from the data suggests that Theme 1 is foundational and common to other medical settings. However, Theme 2 and particularly Theme 3 appear especially critical for hospice enrollment and care. CONCLUSION: Language barriers present unique challenges in hospice care because of the nuance and compassion required for delicate goals of care and EOL conversations. Reducing disparities requires addressing each level of this multilayered barrier.

Multiple Stakeholders' Perspectives Regarding Barriers to Hospice Enrollment in Diverse Patient Populations: A Qualitative Study.

CONTEXT: Although studies show disparities in hospice care utilization, many questions remain regarding the causes of these disparities. Most studies focus on a single ethnic/racial group, and most use physician informants. None compare and contrast views of multiple stakeholders or use a systems approach within a single geographic region. OBJECTIVES: To gain an in-depth understanding of causes of hospice enrollment disparities in diverse patient populations within one state in the U.S. METHODS: We conducted in-depth, individual interviews with multiple stakeholders in hospice care for diverse communities in Rhode Island. We identified participants through purposeful and snowball sampling strategies, aiming for a maximum variation sample. Interviews were audio-recorded, transcribed verbatim, and analyzed using a multistep grounded theory approach. RESULTS: Participants, self-identifying from a wide variety of ethnic backgrounds, included physicians, nurses, social workers, chaplains, nursing assistants, administrators, and caregivers. Five themes emerged regarding patient- and provider-level barriers to hospice enrollment: 1) universal challenges of goals of care (GOC) conversations; 2) cultural norms and beliefs; 3) language barriers; 4) provider-specific challenges; and 5) trust. In minority populations, the central theme of GOC conversation challenges was intensified by the other four themes. Suggested solutions included 1) increased palliative care training; 2) "cultural interpreters" from local communities; 3) specially trained "GOC language interpreters"; 4) improved workforce diversity; and 5) community-level advocacy. CONCLUSION: The disparity in hospice enrollment among diverse patient populations is a complex and nuanced problem, involving numerous interrelated barriers. Addressing this disparity will require innovative solutions at multiple levels.