• Katherine Cicolello and Gowri Anandarajah.
• The Warren Alpert Medical School of Brown University, Providence, Rhode Island, USA.
• J Pain Symptom Manage. 2019 May 1; 57 (5): 869-879.

ContextAlthough 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.ObjectivesTo gain an in-depth understanding of causes of hospice enrollment disparities in diverse patient populations within one state in the U.S.MethodsWe 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.ResultsParticipants, 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.ConclusionThe 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.Copyright © 2019 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

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