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

Abstract

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. To gain an in-depth understanding of causes of hospice enrollment disparities in diverse patient populations within one state in the U.S. 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. 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. 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.