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

Abstract

ContextLanguage barriers contribute significantly to disparities in end-of-life (EOL) care. However, the mechanisms by which these barriers impact hospice care remains underexamined. ObjectivesTo 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. MethodsQualitative, 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. ResultsTwenty-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. ConclusionLanguage 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.