Sociodemographic Disparities in Access to Hospice and Palliative Care: An Integrative Review

Abstract

Background: There is growing evidence of disparities in access to hospice and palliative care services to varying degrees by sociodemographic groups. Underlying factors contributing to access issues have received little systematic attention. Objective: To synthesize current literature on disparities in access to hospice and palliative care, highlight the range of sociodemographic groups affected by these inequities, characterize the domains of access addressed, and outline implications for research, policy, and clinical practice. Design: An integrative review comprised a systematic search of PubMed, Embase, and CINAHL databases, which was conducted from inception to March 2020 for studies outlining disparities in hospice and palliative care access in the United States. Data were analyzed using critical synthesis within the context of a health care accessibility conceptual framework. Included studies were appraised on methodological quality and quality of reporting. Results: Of the articles included, 80% employed non-experimental study designs. Study measures varied, but 70% of studies described differences in outcomes by race, ethnicity, or socioeconomic status. Others revealed disparate access based on variables such as age, gender, and geographic location. Overall synthesis highlighted evidence of disparities spanning 5 domains of access: Approachability, Acceptability, Availability, Affordability, and Appropriateness; 60% of studies primarily emphasized Acceptability, Affordability, and Appropriateness. Conclusions: This integrative review highlights the need to consider various stakeholder perspectives and attitudes at the individual, provider, and system levels going forward, to target and address access issues spanning all domains.

Hospice Enrollment, Future Hospitalization, and Future Costs Among Racially and Ethnically Diverse Patients Who Received Palliative Care Consultation

“…Research is needed to understand how socioeconomic factors contribute to readmissions among PCC patients and how gaps in care following discharge or lower quality care in the community contribute. 58,61 Despite well-documented racial disparities in hospice and endof-life acute care use in the United States, 2,21-23,28,29 race and ethnicity did not predict hospice enrollment among PCC patients in our study. Medicaid status was the only variable that explained discharge to hospice.…”

“…When considering PCC's effectiveness in helping patients align future care with goals, clinicians must consider how these and other socioeconomic factors introduce barriers to achieving goals postdischarge. [58][59][60][61] Low R 2 values in our regression models also indicate variables not available in our study (e.g., health literacy, English language proficiency, access to high quality community-based care) 58,62,63 may explain differences in postdischarge outcomes. Research is needed to understand how socioeconomic factors contribute to readmissions among PCC patients and how gaps in care following discharge or lower quality care in the community contribute.…”

“…Research is needed to understand how socioeconomic factors contribute to readmissions among PCC patients and how gaps in care following discharge or lower quality care in the community contribute. 58,61…”

“…60 One study found, for example, higher social support reduced the odds of minority patient readmission or death by 65.0%. 61 To improve gaps in care and reduce readmissions post-discharge, primary palliative care services should be expanded 58,59,69-71 and culturally-sensitive PCC communication should be adopted across settings, 72-75 particularly in less affluent communities and racial minority communities less likely to have access to primary palliative care. 59,76 Systems should educate community-based clinicians in PCC communication and form community resident or patient/family boards to ensure PCC interventions reflect the values and priorities of ethnic minority patients.…”

Location of end‐of‐life care of children with cancer: A systematic review of parent experiences

“…47 As healthcare systems differ around the world, making direct comparisons between nations is thus difficult, and not necessarily appropriate. 48 The anecdotal experience of the authors, however, suggests more families of children with cancer are now utilizing freestanding children's hospices than what is currently reported in the literature. This may be due to relationships established between healthcare providers and the hospice, or because of unique facilities offered at the hospices.…”