The Medicare hospice benefit and similar benefits of other insurers were designed to ensure that patients in the last six months of life have access to high-quality palliative care. However, African-American patients are less likely to utilize hospice than white patients. This study suggests that disparities in hospice utilization among patients with cancer may be the result of cancer treatment preferences among African American patients that make them ineligible despite greater perceived needs for hospice care. In particular, this study offers three main insights into these disparities in hospice access.
First, we found that African-American patients with cancer are more likely than white patients to want aggressive cancer treatment. This difference in preferences persists after adjusting for clinical and demographic characteristics. This result is important because although other studies have observed racial differences in preferences for life-sustaining technologies,26-29
they have not examined preferences for cancer treatment. Preferences for aggressive cancer care, as well as other aggressive technologies, could be linked to medical distrust, quality of care, or to communication issues between patients and providers.
Second, we found that African-American patients with cancer had greater perceived needs for specific hospice services compared to white patients. This difference appears to be independent of clinical characteristics (e.g. symptom burden, performance status) that are associated with greater needs. Furthermore, African American patients whose treatment preferences would have excluded them from hospice had greater perceived needs than did white patients who would have been eligible.
Third, we found that that the greater perceived need for hospice services among African Americans was attributable largely to differences in self-reported finances. That is, the observed differences in perceived needs between African American and white patients may reflect financial resources since those reporting the fewest financial resources also report the greatest need for services. This finding is consistent with other studies suggesting that the mechanisms driving health disparities include not only cultural differences associated with race but also economic characteristics that may be fundamentally unrelated to race.36, 68, 69
Thus, these economics factors should be further explored to understand why poorer patients want more services. For instance, it is possible that wealthier patients have more resources for care at the end of life, and use these resources to obtain services outside of hospice. If so, then wealthier patients may be better able to avoid the “terrible choice” requiring that they forgo treatment in order to receive hospice benefits. However, this is not known.
Together, these findings suggest that the hospice eligibility criteria of Medicare and other insurers requiring patients to give up cancer treatment contribute to racial disparities in hospice utilization. Moreover, these criteria do not select those patients with the greatest needs for hospice services. To the degree that this eligibility requirement prevents hospice utilization by those patients with the greatest needs, it fails to fulfill its purpose and should be reconsidered. It is also unfair: other Medicare-supported services do not require that patients forgo one treatment in order to get another.70
Instead, this study suggests that hospice access could be made fairer by using eligibility criteria that are more directly need-based. For instance, eligibility might be better determined by assessing needs for specific hospice services such as pain or symptom management. This would make eligibility for hospice similar to eligibility for the Medicare Home Care Benefit, which is perhaps the closest Medicare program.70
This study has several limitations. First, the results reported here are based on patients' self-reported needs for hospice services, but it is possible that these patients could not adequately appreciate how the services described here could benefit them.63
However, patients arguably are the best judges of their own needs, even if those assessments are imperfect.
Second, this study assessed only five hospice services. It is possible that the finding of greater perceived needs reported here by African-American patients would not be found for other services that hospice provides (e.g. delivery of medications or durable medical equipment). Although this is possible, there is no reason to believe that the pattern observed for the five services described here are unique.
Third, this study did not assess actual choices about hospice enrollment, which may be influenced by factors like the availability of family members who can assist with home care. A patient without adequate informal caregiving support and supervision at home may be less likely to enroll. Therefore, further research is needed to define which patient characteristics, such as the availability of family support, influence actual choices about hospice enrollment.
For 25 years, hospice services have been restricted to patients in the last six months of life who are willing to give up curative treatment.18
Although this restriction was intended to control costs, it has substantially reduced access to hospice for many patients who have needs for hospice services, and a disproportionate number of these patients are African American. This eligibility criterion should be reconsidered, and needs-based criteria should be considered in order to make hospice eligibility criteria both fairer and more consistent with eligibility criteria for other health insurance benefits.70