There exists a 4% difference in hospice use between Blacks and Whites who died in urban U.S. NHs in 2006, and when controlling for covariates, interactions, and clustering of decedents in NHs and counties, the race difference is greater (AOR = 0.81, 95% CI = 0.77-0.86). However, although Blacks had an overall lower hospice utilization rate, there were circumstances in which subgroups of Blacks used hospice at slightly higher rates than comparable subgroups of Whites, for instance, among individuals with DNR orders. On the other hand, among Blacks and Whites with CHF, Blacks used hospice at a lower rate. Also, we found substantial variation in hospice use between Blacks, including higher hospice use among Blacks with versus without DNR or DNH orders or cancer, and those in low-tier versus other NHs. Additionally, there was lower hospice use among Blacks with versus without CHF. Broadly, findings show Black NH decedents are not a homogeneous group, depending on other factors Blacks have different propensities to enroll in hospice.
An ecological framework guided this study, drawing attention to the influence of individual, NH, and county factors on hospice use, as well as the correlation of data between decedents within NHs and counties. Consistent with prior research, however, we find individual-level factors have the strongest and most direct effect on racial differences in hospice use. Still, there are also meaningful effects of NH factors, particularly death in a low-tier (largely Medicaid) NH.
At the individual level, there are some notable differences by race regarding the factors associated with hospice use or the magnitude of their effect, especially advance directives and diagnoses at death. Regarding advance directives, Blacks with DNR orders are found to be more likely to use hospice than Whites with DNR orders, and Blacks with DNR or DNH orders are more likely to utilize hospice than Blacks without these advance directives. However, Black NH residents are less likely than Whites to have advance directives (Resnick et al., 2008
), or even to have had advance directive discussions with NH staff (Rich et al., 2009
). Regarding diagnoses at death, we find Blacks and Whites with cancer utilize hospice at similar rates, but Blacks with cancer are far more likely to use hospice than Blacks without cancer. In contrast, Blacks with CHF are found to be less likely to use hospice than both Whites with CHF and Blacks without CHF. These findings are consistent with research that identifies 41.0% lower odds of hospice use among Black versus White Medicare beneficiaries with end-stage heart failure (Givens, Tija, Zhou, Emanuel, & Ash, 2010
). However, these findings vary from that of research that identifies no interaction between race and CHF in relation to hospice use among NH decedents in Florida (Kwak et al., 2008
), and this variation may be due to differences in hospice utilization among CHF sufferers in Florida compared with those nationally. However, the interaction we identify reflects a persistent racial difference in the choice of treatment for chronic terminal illnesses. As previously noted, research indicates that Blacks prefer more aggressive end-of-life treatments than Whites (Fishman et al., 2009
) and suggests racial differences in end-of-life care preferences may be due to mistrust of health care systems among Blacks (Degenholtz, Thomas, & Miller, 2003
One NH factor is found to be interactive with race in relation to hospice use: Blacks in low-tier NHs are more likely to use hospice than Blacks in other NHs. This indicates that individuals who would otherwise be at risk of receiving poor care in low-tier NHs (Mor et al., 2004
) are likely receiving better care through hospice (Miller et al., 2002
). This cross-level interaction and the significant influence that clustering of decedents in NHs has on the variability of hospice use substantiate the relevance of the ecological framework, and the appropriateness of the multilevel modeling approach, for examining racial differences in hospice use.
The clustering of decedents in counties also helps explain variation in hospice utilization, suggesting that intra-county similarities exist between individuals with regards to hospice use. However, no county factors are associated with racial differences in hospice use, suggesting that community factors have minimal influence on racial differences in hospice use in NHs, the geographic scope of influential factors is more localized or more generalized than county-level, or county variables not in our analyses are of importance.
Several implications for policy, practice, and research follow from our findings. Most broadly, by highlighting the continued lower use of hospice by Black compared with White NH decedents, our findings support recent recommendations for revising hospice eligibility criteria to allow some level of “curative” care be permitted under hospice (Fishman et al., 2009
; Landers, 2009
). Enrollment in Medicare hospice currently requires forfeiture of other Medicare Part-A benefits when they are provided for the terminal condition (including hospital and skilled nursing facility [SNF] care), and this may deter hospice use particularly among Blacks. For Blacks, forfeiture of benefits/services could be especially unattractive, given individuals’ histories and fears of undertreatment in health care (Degenholtz et al., 2003
). Accordingly, changing Medicare hospice policy to allow for simultaneous receipt of curative treatments and/or hospital and SNF care has the potential to reduce racial differences in hospice use. Examining the impact of such a change on overall hospice use, equity of use, and costs appears warranted (Landers, 2009
) and will be supported by the “Medicare Hospice Concurrent Care Demonstration Program.
” This demonstration will allow patients who are eligible for hospice to receive all other Medicare services simultaneously with hospice care (Congressional Research Service, 2010
Because hospice care in NHs has been associated with higher quality end-of-life care, such as better pain management (Miller et al., 2002
), it may follow that lower use of hospice by Black NH residents results in their receipt of a lower quality of care. However, whether hospice use similarly affects quality outcomes for Black and White NH residents has not been empirically tested. Accordingly, research comparing quality of care outcomes between Black and White hospice users could be an important next step.
Our findings of racial differences in hospice utilization associated with decedents’ diagnoses also have practice and research implications. Given the low likelihood of hospice use among Blacks with CHF, targeted hospice outreach to Blacks with CHF and other chronic terminal diseases also could help level racial differences in hospice use. Because Blacks with cancer are highly likely to utilize hospice, educational outreach efforts highlighting that hospice is for all terminally diagnosed Medicare beneficiaries and not just those with cancer could be helpful. Research examining facilitators and barriers of hospice use among Blacks with CHF also would be informative.
Our findings on the greater positive association between DNR and DNH orders and hospice use for Black versus White NH residents suggest that physicians and NH staff engaging in discussion about advance directives with NH residents might support racial equality in hospice use (Rich et al., 2009
). Considering our findings, concerns are raised regarding certain changes occurring in NH care planning, particularly the national transition from MDS 2.0 to MDS 3.0, which entails the elimination of advance directive items. To the extent that removing these items from the MDS detracts from explicit discussion of advance directives between NH staff and residents, this change could have deleterious effects on advance care planning and hospice use among NH residents. Longitudinal research on advance care planning and hospice use among NH residents before and after implementation of MDS 3.0 could address these concerns.
We also found Blacks in low-tier versus other NHs were more likely to use hospice. Future research could examine the dynamics of hospice use in low-tier NHs to clarify the meaning of this finding. Potentially low-tier NHs engage hospice as a supplemental form of staffing, given their limited resources (Banaszak-Holl, Zinn, & Mor, 1996
). Such a strategy could result in higher hospice use among Blacks because low-tier NHs disproportionately serve Blacks (Mor et al., 2004
). Alternatively, low-tier NHs might have higher proportions of Black staff than upper-tier NHs, and Black residents might be better informed about hospice (and/or advance directives) by Black staff. Examination of these possibilities would be a valuable contribution to the literature.
Limitations of this cross-sectional study are acknowledged. Though we identified numerous associations between individual, NH, and county factors and hospice use, causality could not be identified. Longitudinal study of racial differences in hospice use is advised. Additionally, analyses relied on categorization of individuals’ races as Black or White, which obscures potential differences in hospice use between native-born and foreign-born Blacks, and ignores other racial/ethnic groups. Identifying factors that influence hospice use among all groups is important for supporting equitable end-of-life care. Also, we found substantial differences in hospice use between states. We controlled for state-level differences in calculating national findings, but did not examine the differences explicitly. Comparison of racial differences in hospice use across states could inform state policies for supporting racially equitable care. Furthermore, our data set was relatively rich, but several measures of interest were unavailable. The MDS includes no data on religious affiliation, but religion could be related to racial differences in care preferences. In some Christian views held among many African Americans, pain and suffering are essential aspects of spiritual commitment, but these beliefs contrast with hospice and palliative care philosophies (Crawley et al., 2000
). A potentially important NH-level measure unavailable is the aggregate race of staff (e.g., percent of White staff). Racial differences between NH residents and staff are associated with various forms of racist behavior, and staff often avoid racist residents (Berdes & Eckert, 2001
). Therefore, patterns of hospice referral might differ between NHs where residents and staff are racially similar versus racially dissimilar. To our knowledge, we examined all relevant county variables. However, examining variations in the geographic scope of decedent clustering, such as zip-code or state-level clustering, could be valuable. Finally, as a test between models, the AIC does not provide information for concluding whether a given model is a good fit for the data, but does permit identification of which tested model fits the data best. Unfortunately, the trade off in using our sophisticated multilevel model is that traditional tests of model fit cannot be applied.
This study makes several important contributions to the existing literature on racial differences in hospice use. It presents national data about hospice use among NH decedents, thus renewing attention to variations in end-of-life care and showing that racial differences in end-of-life care continue to exist nationally. By merging multiple data files, our analyses account for individual, facility, and community factors. This contribution is particularly important because few prior studies of racial differences in hospice use take into account NH-level factors; however, for NH decedents—who are a fourth of Medicare hospice users (Miller et al., 2010
)—we found some NH characteristics to have a significant association with hospice use. Increasing hospice enrollment is a national priority with potentially substantial implications for quality of care and life and health care costs. Policy and practice initiatives aiming to increase hospice use among minority groups can be informed by our findings.