Trust as a Central Factor in Hospice Enrollment Disparities Among Ethnic and Racial Minority Patients: A Qualitative Study of Interrelated and Compounding Factors Impacting Trust.

Abstract

Background: Disparities in end-of-life (EOL) care remain among ethnic/racial minority populations. Choosing hospice care in the United States depends on goals-of-care discussions founded on trust. While studies examine hospice enrollment disparities and others explore trust in hospice settings in general, very few explicitly examine the role of trust in hospice enrollment disparities. Objectives: To explore factors impacting trust and how these might contribute to disparities in hospice enrollment. Design: A qualitative, individual interview study, based on grounded theory. Setting/Subjects: Setting: Rhode Island, USA. Participants: Multiple stakeholders in EOL care, with diverse professional and personal backgrounds. Measurements: In-depth semistructured individual interviews were audio-recorded and transcribed as part of a broader study of hospice enrollment barriers in diverse patients. Analysis: Five researchers did a secondary data analysis, focusing on trust as the central phenomenon of interest. Researchers independently analyzed transcripts, then held iterative group analysis meetings until they reached consensus regarding themes, subthemes, and relationships. Results: Twenty-two participants included five physicians, five nurses, three social workers, two chaplains, one nursing assistant, three administrators, and three patient caregivers/family. Interviews reveal that trust is multidimensional, involving personal- and systems-level trust, and both locus and degree of trust. Factors impacting trust include: fear; communication/relationships; knowledge of hospice; religious/spiritual beliefs; language; and cultural beliefs/experiences. While some are common across groups, several are more prevalent in minority populations. These factors appear to interact in complex ways, unique to individual patients/families, compounding their impact on trust. Conclusions: While gaining patient/family trust regarding EOL decision making is challenging across all groups, minority patients often experience additional compounding factors impacting trust building. More research is needed to mitigate the negative ways these interacting factors impact trust.