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

Abstract

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.

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“…29,30 Lack of awareness about hospice care is still a significant barrier to hospice enrollment. 12,[31][32][33][34][35] This lack of understanding may be particularly important when it comes to racial disparities and hospice. 32,34,36,37 This disparity is evidenced by the fact that more than 85% of hospice enrollees are White.…”

A systems thinking framework to improve care of the terminally ill: An Australian case study

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“…As recently as 2019, researchers noted the perception by patients and their families that palliative care consultations continued to be offered too late. 10 In 2017, Back had noted the changing U.S. culture in oncology practice where palliative care peers were being engaged less as a final resort. But he argued more needed to be done.…”

Timing of palliative care: When to call for a palliative care consult

“…Definitional barriers surrounding palliative care were also identified as an important barrier to consultation, with physicians more apt to engage this service if it were termed “supportive care” rather than palliative. The most comprehensive qualitative study of barriers to palliative care utilization to our knowledge further identified five key barriers, including challenges of goals of care conversations, cultural beliefs, language barriers, provider‐specific challenges, and trust . Specialist variation also exists, with surgeons less likely to consult palliative care than physicians in other specialties …”