“We Are Here to Assist All Individuals Who Need Hospice Services”: Hospices’ Perspectives on Improving Access and Inclusion for Racial/Ethnic Minorities

Abstract

Background: Racial/ethnic minority populations in the United States are less likely to utilize hospice services nearing their end of life, potentially diminishing their quality of care while also increasing medical costs. Objective: Explore the minority hospice utilization gap from the hospice perspective by examining perceived barriers and facilitators as well as practices and policies. Method: Qualitative surveys were conducted with 41 hospices across the United States. Qualitative data analysis included performing a limited content analysis, including the identification of themes and representative quotations. Results: Commonly reported barriers to hospice care for racial/ethnic minorities included culture/beliefs, mistrust of the medical system, and language barriers. A major theme pertaining to successful minority hospice enrollment was an inclusive culture that provided language services, staff cultural training, and a diverse staff. Another major theme was the importance of community outreach activities that extended beyond the medical community and forming relationships with churches, racial/ethnic minority community leaders, and Native American reservations. Conclusion: The importance of incorporating a culture of inclusivity by forming committees, providing language services, and offering culturally competent care emerged in this qualitative study. Building strong external relationships with community groups such as churches is a strategy used to increase racial/ethnic minority utilization of hospice.

Disparities in Palliative and Hospice Care and Completion of Advance Care Planning and Directives Among Non-Hispanic Blacks: A Scoping Review of Recent Literature

“…26,63,71,78,92,121,219 Such initiatives deployed in faith-based settings would likely increase minority participation in end-of-life and advance care planning. 249,250 The finding that frequency of religious service attendance is positively associated with completion of an advance directive is exciting news for advocates promoting advance care planning in non-Hispanic Black communities. In order to promote advance directives among non-Hispanic Black communities, multifaceted church-based investigational interventions are needed that include 1) minority health care providers, 2) church leaders, 3) community advocates and leaders, 4) family members who have experienced losing loved ones with or without an advance directive, and 5) legal counselors.…”

“… 26 , 63 , 71 , 78 , 92 , 121 , 219 Such initiatives deployed in faith-based settings would likely increase minority participation in end-of-life and advance care planning. 249 , 250 …”

Hospice Response to COVID-19: Promoting Sustainable Inclusion Strategies for Racial and Ethnic Minorities

“…Historically, utilization of hospice care has been lower among racial/ ethnic minority groups, and closing that gap in older adult hospice utilization could save Centers for Medicare & Medicaid Services nearly 270 USD million per year (Hughes & Vernon, 2019). Some hospices have been working to address the disparities in utilization through strategies such as outreach with the community and religious groups, staff cultural training, and providing extensive language services (Hughes & Vernon, 2020).…”

“…Research shows there is a strong reliance on church and spiritual leaders for end-of-life care decisions, particularly for African Americans (Rhodes et al, 2015). In a survey of 41 hospices nationwide, fostering relationships with community partners and religious organizations was a dominant strategy for hospices aiming to increase racial/ethnic minority group utilization (Hughes & Vernon, 2020). During the COVID-19 pandemic, pastors across the country have been overwhelmed with higher illness and death rates among their congregation (Sanchez, 2020).…”

US hospices’ approach to racial/ethnic minority inclusion: a qualitative study

“…We build on recent exploratory research that suggests that within hospices, incorporating a culture of inclusivity through forming committees, engaging in outreach education programmes, providing adequate language services, and offering culturally competent care can lead to improved quality and/or utilisation for racial/ethnic minority groups. 11 To our knowledge, our study is the first to examine these strategies in detail to help understand specific actions that hospices find effective as well as any related costs and benefits of inclusionary strategies by hospices for racial/ethnic minority groups.…”