Discussion
African Americans have a higher incidence of cancer and higher cancer death rates than do their white counterparts yet comprise only 8.7% of the hospice population. The purpose of this review was to identify the barriers preventing AAs from using hospice . A preference for aggressive care, lack of knowledge of hospice, lack of a diverse hospice staff, religious factors, mistrust of the healthcare system, and access were identified as barriers to use contributing to this end-of-life healthcare disparity. It does not appear that any one individual factor is responsible for lower hospice rates as most studies discovered multiple barriers. Instead, barriers are probably multifactorial and include a mixture of cultural preferences, spirituality, and historical perspectives.
Hospice decreases pain, improves patient and family satisfaction, decreases spiritual distress, offers enhanced bereavement services, and may prolong life in those with cancer. Most of the articles reviewed document the disparities between AA and other ethnic groups in using hospice and that AAs use hospice services significantly less than do whites. In contrast, Keating et al found that there were no significant differences among races in the rate of hospice use. This finding may be a result of sample demographics as AAs made up only 10% of the sample and the study may not have had enough power to detect these differences.
African Americans' preference for more aggressive care at the end of life was supported and seems to have spiritual and historical roots. A strong faith in God and His will appear to guide end-of-life decisions and make AAs less likely to cease curative treatment. However, the idea of aggressive therapy seems in paradox with the concept of God's will by choosing therapies that may only prolong the inevitable. For example, if God's will is for an individual to have a diagnosis of cancer and die of their disease, aggressive interventions seem to interrupt or postpone God's will. Mistreatment and discrimination may also play a part in the choice to pursue more aggressive treatment to avoid what is perceived as a lack of medical treatment when curative therapies are withdrawn with hospice enrollment. A preference for aggressive care may also be supported by the fact that AAs with cancer are more likely to die in a hospital than at home (P = .0002). Bruera et al found that AA oncology patients are 1.5 times more likely to die in a hospital than white oncology patients (P < .0001). Mor and Hiris' study also supports these findings as they also discovered that AAs with cancer were significantly more likely to die in a hospital (P < .5).
Multiple articles suggest that lack of knowledge about hospice and the services provided is a barrier to its use. African Americans' exposure to hospice was found to be less than that of other ethnicities and may help explain why it is used less. Interestingly, Rhodes et al found that oncology patients of all ethnicities were significantly more likely to be informed about hospice services. One could argue that oncologists are informing patients about options but are not timely in making referrals.
Of the studies that addressed diversity of hospice staff, they all agreed that lack of diversity in staff adversely affects hospice use by AAs. In a review of O'Mahony et al, a lack of diversity of hospice staff (different religion) was also discovered as a possible barrier, which supports this review's findings. According to the Hospice and Palliative Nurses Association, only 5% of its members are AAs.
African Americans' trust in the healthcare system has been cited as a barrier to hospice use. However, different sources on this topic are in conflict. Three of the articles reviewed that mentioned trust found that AAs had a lack of trust in healthcare providers, their motives, and willingness to treat them equitably. One article cited that participants saw an improvement in patient-provider relationships, whereas another did not find any trust issues among its participants. O'Mahony et al and Fishman et al also agree that a barrier is mistrust of the healthcare system, causing AAs to opt for more aggressive care because of fear of being denied treatment.
The issue of access to hospice is unresolved. Haas et al found that socioeconomic status was not found to be barrier to hospice and is similar to the findings in Cohen's systematic review, which found that AAs used hospice less even when controlling for socioeconomic factors and educational level. This contradicts some of the findings of O'Mahony et al, which cited lack of access to services (socioeconomic) as a possible barrier.
There are limitations to this review. Only three articles had a primary focus on oncology patients. In addition, four of the articles included cancer as a diagnosis at end of life, but it was not the sole diagnosis evaluated. An additional limitation is the assumption that dying AA oncology patients who do not enroll into hospice are not experiencing good deaths. Perhaps they have family, friends, and community support systems that help achieve the same goals that hospice aims to provide. This warrants further exploration.
More research is needed to address interventions to reduce or eliminate these barriers and measure whether they are successful in decreasing the disparities in hospice use. In addition, more research is needed to assess the satisfaction and quality of end-of-life care of AAs who do not use hospice.