Hospice Quality,Race,and Disenrollment in Hospice Enrollees With Dementia

Introduction

More than 30% of U.S. decedents die with or from dementia and almost half of the hospice recipients have dementia. ¹ At the same time, the decedent population in the United States is becoming more racially and ethnically diverse. Yet, racial and ethnic minoritized people with dementia (PWD) are less likely to enroll in hospice at end of life and those who do are more likely to experience burdensome transitions following hospice enrollment, including hospice disenrollment.^2–11 Disenrollment interrupts care continuity and limits access to interdisciplinary palliative care services at end of life. ¹² Moreover, disenrollment may signify that hospice providers are either enrolling marginally eligible individuals or are attempting to avoid paying for higher cost services that support optimal patient care.^13–20

Improving racial equity and reducing disparities in hospice is a major priority for the Centers for Medicare and Medicaid Services (CMS), the primary payor for hospice in the United States. ²¹ Bolstering evidence on the relationship between hospice quality and racial disparities in hospice disenrollment for PWD can help inform these efforts. This has become feasible since activities to measure and report hospice quality have intensified in recent years. Since 2015, hospices have been required to report quality metrics or face financial penalties, and public reporting of hospice quality began in 2018. ²²

It is not well understood if known racial disparities in disenrollment among PWD are due to sorting of minoritized groups into lower quality hospices or if disparities persist across the spectrum of hospice quality. Previous studies have found that racial minoritized individuals are more likely to receive care from lower quality health care facilities, including hospitals, nursing homes, home health, and hospice.^23–27 However, studies also show that racial and ethnic minoritized individuals tend to have worse outcomes within the same facility/provider.^28–30 In the hospice setting, Black hospice recipients had higher rates of transitions to the emergency department and hospital than White recipients within the same hospice, although they were not more likely to be enrolled in hospices with higher transition rates. ³¹

Determining whether racial and ethnic minoritized PWD are more likely to be enrolled in hospices with high rates of disenrollment—or whether disparities persist across all hospices—can help identify targets for policy or regulatory changes. The objective of our study was to characterize the association between hospice quality and racial disparities in disenrollment among PWD. Specifically, we sought to assess disparities in disenrollment between low- and high-quality hospices, as well as within hospices with similar quality ratings.

Methods

Results

Predicted probabilities of disenrollment

Fully adjusted predicted probabilities of disenrollment by race across hospice quality categories are shown in Figure 1 and Supplementary Appendix Table SA2. The predicted probability of disenrollment ranged from 16.5% (95% confidence interval [CI] 15.9–17.2) for White PWD in the highest quality hospices to 32.3% (30.8–33.9) for Black PWD in unrated hospices. Fully adjusted predicted probabilities were attenuated from the null model values, particularly for the unrated hospice category (Supplementary Appendix Table SA3). The interaction term for race and hospice quality was statistically significant (p = 0.02), with some indication that differences in disenrollment between races were higher in the lower quality and unrated hospices, but CIs were overlapping.

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FIG. 1.

Adjusted predicted probability of disenrollment by race and hospice quality. Hospice quality is assessed using the CAHPS survey for the proportion of respondents rating a hospice 9 or 10 out on a scale of 1–10, where 10 is best. Predicted probabilities are estimated using a multilevel mixed-effects model that includes a random intercept for hospice, fixed effects for hospice quality and race, an interaction term for hospice and race, and are adjusted for hospice case-mix (age, gender, insurance status, comorbidities, residence type, rurality, area deprivation, region) and hospice organizational characteristics (years in operation size, ownership, and proportion of dementia patients). AAPI, Asian and Pacific Islander; CAHPS, Consumer Assessment of Healthcare Providers and Systems.

Discussion

All people deserve access to high-quality care at end of life. ³⁸ Understanding drivers of racial disparities in hospice use patterns and care quality for the growing dementia population is a major priority for society generally and federal payors specifically. In this study of Medicare hospice recipients with dementia, our results indicate that the racial disparities in disenrollment among PWD may be driven by both sorting of racial and ethnic minoritized groups into lower quality or unrated hospices—which tend to have higher disenrollment rates—and also that disparities persist within both low- and high-quality hospices.

Our findings highlight institutionalized racism and discrimination that limits access to high-quality hospice care for racial and ethnic minoritized PWD and results in worse care quality within both high- and low-quality hospices. More research is needed to untangle how these disparities arise. One possibility is that discriminatory policies that reinforce residential segregation have resulted in geographic disparities in access to high-quality hospices. This has been shown to be the case for many other types of health outcomes and service use, and was made even more obvious by COVID-19.^39–48 However, a study of home health found that even within the same neighborhood, racial and ethnic minoritized individuals were more likely to receive care from lower quality agencies. ²⁵ Since home health and hospice clinicians visit patients in their home, the geographic forces that sort minoritized patients into hospitals and clinics in closer physical proximity to patients may be less prominent for home health and hospice.

Whether racial minoritized PWD are enrolling in lower quality hospices in the same geographic region or neighborhood requires further inquiry. If that is the case, it will be important to determine whether selective enrollment is due to hospice organizational factors (e.g., targeted outreach by low-quality providers to minoritized groups, especially those with dementia), community provider factors (e.g., referral patterns from clinicians), or patient factors (e.g., limited access to information about hospice quality). Previous research has shown that for-profit and lower quality hospices served higher proportions of racial and ethnic minoritized groups and patients with dementia, and similar incentives for expanded enrollment may be at play for lower quality hospices. ⁴⁹

More research is needed to understand why racial and ethnic minoritized PWD have higher disenrollment rates than White PWD in both low- and high-quality hospices. Some possible explanations include implicit and explicit bias from staff who lack adequate training in culturally responsive care.^50–52 Supporting this hypothesis is previous research showing that Black and Hispanic patients report lower scores on getting emotional and religious support within the same hospice. ²³ A historical legacy of racism in health care may result in racial and ethnic minoritized groups being more hesitant about the hospice eligibility requirement to forgo disease-directed treatments, leading to revocation and hospitalization in the face of a health crisis. ⁵³

The Hospice Quality Reporting Program (HQRP) is relatively new and continues to evolve. ²¹ Our findings add to prior evidence for both strengths and weaknesses of the current version of the HQRP and specifically the CAHPS survey.^54–57 Although differences in disenrollment between hospice quality categories were not large, the fact that disenrollment increased as hospice quality decreased indicates that the CAHPS survey may assess the hospice organization's ability to support patients and families through the end-of-life period. On the contrary, the publicly reported measure, which does not stratify by race, might miss the nuance when it comes to the experience of racial and minoritized patients. It was also notable that disenrollment was substantially higher in the unrated hospices, which accounted for one-third of all hospice providers and care received by almost 10% of individuals in our sample. Providers and consumers going to the Care Compare website will have limited information about these hospices, some of which may have the most concerning practices of disenrollment. This may further exacerbate inequities for disadvantaged groups, who may already experience difficulties accessing web-based Care Compare data. ⁵⁸

Our findings have policy implications for addressing racial disparities in disenrollment from hospice for PWD. At the policy level, regulators can try to increase access to high-quality hospices for racial and ethnic minoritized PWD through financial incentives for serving more racial and ethnic minoritized individuals.^59,60 This may also allow hospices to provide more disease-directed treatments for patients concurrently with palliative treatments, which may enable continued enrollment. At the same time, they could enhance scrutiny on practices in lower quality hospices through increased audits. As the HQRP continues to evolve, policymakers should be ensuring that equity is a component of measurement and there are no unintended consequences of worsened racial disparities, as has been found for nursing homes. ⁶¹ Policymakers can also require that hospice organizations invest in efforts to provide equitable care, such as by mandating clinician training in culturally responsive care.

This study has limitations. The CAHPS survey has low response rates and may be subject to selection bias. However, the publicly reported values are already adjusted for response percentile for the hospice provider. ³² The RTI race measure is based on an algorithm rather than self-report, which is considered the gold standard for assessing race and ethnicity. In addition, race categories are broad and there are no options for mixed race. However, the RTI measure has been shown to have adequate accuracy for assessing race and is considered a better alternative to the other race measure available in Medicare data. ⁶² Finally, we used the CAHPS data reported in 2018, which are based on hospice survey results from 2016 to 2018, while patient data included enrollments between 2012 and 2017, and so, it is possible that the quality of the hospice was different than when patients received care.

In conclusion, hospice disenrollment decreases continuity of care and deprives seriously ill individuals of access to holistic and interdisciplinary palliative care when they are at their most vulnerable. It is unjust that racial and ethnic minoritized PWD are more likely to be disenrolled than White PWD. While higher disenrollment rates may be, in part, due to sorting of racial and ethnic minoritized PWD into lower quality and unrated hospices, we found a higher probability of disenrollment for racially minoritized PWD in both low- and high-quality hospices. Policy interventions should be aimed at increasing access to high-quality hospices for racial and ethnic minoritized PWD, and also ensuring that investments are made in improving care equity across all hospices.