Although we found important racial and ethnic differences in terminal illness acknowledgment, religiousness, and treatment preferences among patients with advanced cancer, none of these factors accounted for observed racial and ethnic differences in ACP. We found that black patients were nearly half and Hispanic patients nearly one quarter as likely as white patients to acknowledge their illness was terminal, black patients were nearly 70% more likely to consider religion very important, and black patients were three and Hispanic patients two times more likely than white patients to prefer life-prolonging care. Compared with white patients, black and Hispanic patients were 40% less likely to have an ACP. Yet this study was negative: these differences in ACP were not impacted by proposed mediators.
Previous research suggests that patients who acknowledge their terminal prognosis experience less aggressive EOL care than those who do not.33
We found that black and Hispanic patients were significantly less likely to acknowledge their terminal illness status or to want a physician to disclose their prognosis as compared with white patients. Yet terminal illness acknowledgment had no appreciable impact on racial/ethnic differences in ACP. Evidently, although racial/ethnic disparities in terminal illness acknowledgment and ACP exist, the lower rates of ACP by the minority patient groups cannot be explained by differences in understanding of life expectancy. Taken together, these findings suggest that efforts to improve ACP by informing patients of their terminal prognosis may not be sensitive to racial/ethnic differences in preferences for prognostic disclosure and acknowledgment.
Religious views within the African American community of the value or sanctity of life have been suggested as explanatory factors for differences in attitudes toward EOL care.20,34,35
Nevertheless, we did not find support for religiousness as a mediator of racial/ethnic differences in ACP. Several possible explanations exist. Our measure of religiousness was based on a single question and may not have captured differences in particular religious beliefs and values between black, Hispanic, and white participants, such as a belief in miracles, that God's power supersedes that of physicians, or that suffering is to be endured as part of a spiritual commitment.20,35-37
This measure also had only three possible response categories ranging from not at all important to very important and may have lacked sufficient variation or power to detect a difference. Therefore, future studies are warranted to confirm our findings with regard to religiousness.
A greater preference for life-sustaining treatment among African American and Hispanic patients compared with white patients has been described previously,7,8,28,38-41
although to our knowledge, this is the first study to describe differences between Hispanic and white patients with advanced cancer. We were surprised to find that treatment preferences had no appreciable impact on the observed racial and ethnic differences in ACP. These findings suggest that although important racial/ethnic differences in treatment preferences exist, they are unlikely to be major explanatory factors in racial/ethnic differences in ACP.
Several limitations should be considered when interpreting these results. Most importantly, the number of black and Hispanic patients enrolled was low (83 black and 73 Hispanic participants), and the overwhelming majority of black and Hispanic patients were recruited from Texas. The extent to which these findings generalize to other areas of the country is unclear and requires further exploration in future studies. Furthermore, as mentioned previously, our measure of religiousness was limited and may not reflect the multidimensional nature of this construct. However, use of other measures such as church attendance is also problematic, because church attendance may decrease in states of ill health.
Our overarching goal in conducting this research was to develop more culturally sensitive approaches to ACP. After establishing that racial/ethnic differences exist, searching for potential mediators is the next step in advancing the field. In light of our negative findings, future research is needed to evaluate the impact of other factors on racial/ethnic differences in ACP and EOL care. Recent scholarship has uncovered a number of other promising and potentially explanatory factors. First, several recent studies highlighted the importance of health literacy in establishing preferences for care and ACP. Volandes et al42
demonstrated that use of video images of advanced dementia improved older patients’ choices for dementia care, and in a randomized controlled trial, Sudore et al43
demonstrated the effectiveness and usefulness of an advance directive redesigned for a fifth-grade reading level. Second, mistrust is often discussed as a potential mediator of disparities.44,45
Interpersonal trust in the patient-physician relationship does not seem to mediate racial differences in ACP46
; however, the impact of distrust in the health care system on racial/ethnic differences in ACP has not been examined. Third, of great concern, implicit or unconscious racial bias has been shown to influence physician treatment of patients in hypothetical scenarios.47
However, the degree to which implicit bias influences physician attitudes and communication around ACP and EOL care is unknown.
In conclusion, we found that although black and Hispanic patients were less likely to consider themselves terminally ill and were more likely to want intensive and potentially futile treatment, these factors did not mediate the observed disparities in ACP, suggesting the need to identify other factors to promote patient-centered, culturally appropriate EOL care among black and Hispanic patients with cancer.