This study investigated the rate and predictors of intensive EOL care among black and white patients who are terminally ill. We found that black patients were three times more likely to experience intensive EOL care and approximately two times more likely to prefer this type of care than their white counterparts. Despite the disproportionate preference for intensive EOL care among black patients, white patients who preferred intensive EOL care were nearly three times more likely to receive it than black patients with the same preference.
Instability in the EOL care preferences of black patients as death approaches may be one explanation for these findings.14
Some observers have suggested that black patients may be reticent to express a preference for comfort care early in an illness given fears that clinicians may withhold treatment or give up too quickly.24
As death approaches, this fear may diminish, allowing black patients to share their desire for palliative care. Alternatively, given that the majority of white patients support a palliative approach to terminal illness, white patients who do not may be more committed to, and expressive of, their preference for intensive care than black patients with a similar inclination at baseline.
Greater attention to patient autonomy among the caregivers and clinicians of white patients may also explain why no white patients who reported either an EOL discussion or a DNR order at baseline received intensive care in the last week compared with black patients. Further investigation of the two instances in which black patients reported having a DNR order at baseline and yet received intensive EOL care in the last week of life suggested that one or more of the following factors may have played a role: a different informal caregiver than the patient's usual informal caregiver was present at the time of clinical deterioration, a lack of awareness of the DNR order by informal caregivers and/or clinicians, and placement in a facility other than the one providing the patient's primary oncology care at the time of terminal hospitalization. This suggests that social forces, beyond the immediate oncologist-patient interaction, may play a larger role in determining EOL outcomes for black patients than for white patients.
Social forces may also explain the results for EOL care conversations. The lack of association of these conversations with receipt of EOL care among black patients is not attributable to a difference in the rate of conversations in the two groups, which were equivalent. Instead, the dilution of the effect of EOL conversations on intensive EOL care among black patients may be as a result of differences in the patient-physician communication process. To counteract this, clinicians may elect to discuss black patient preferences more frequently as the illness progresses and discuss the elicited preferences with caregivers (with particular attention to extended family and friends). They might also devise plans to ensure that treatment preferences are known and documented so that they can be respected should an unanticipated medical crisis occur (eg, 911 calls, being taken to an alternative facility, caregiver fear or confusion). Knowing in greater detail the content of the EOL conversations between physicians and black patients, as well as the timing of the conversation relative to the patient's diagnosis (eg, black patients tend to be diagnosed later in the course of their illness41,42
) and differences in the events leading up to death, would further our understanding of how clinical communications influence racial differences in receipt of EOL care.
Finally, positive religious coping was expected to be of greater importance to black rather than white patients in predicting receipt of intensive EOL care. Although positive religious coping was endorsed by a significantly greater number of black patients, it was not associated with more intensive EOL care among black patients. However, this result should not be misinterpreted as suggesting that religious coping is unimportant to black patients. On the contrary, black patients had higher levels of positive religious coping relative to white patients, and this uniformly high degree of religious coping (and therefore, less variability in this study) may contribute to a lack of predictive power. In other words, positive religious coping was better able to explain why a white patient would receive intensive EOL care than a black patient because most black patients were positive religious copers. Differences in religious traditions or practices may also account for the observed differences in the effect of positive religious coping by race. Future research is needed to examine this possibility.
Further research should also investigate racial differences in levels of existential and social support–related QOL at EOL. Black patients frequently report high levels of religious affiliation and spirituality, as they did in this study.28,43,44
This finding, in conjunction with evidence that the existential domain of the McGill QOL Questionnaire is highly correlated with overall QOL near death among patients with advanced cancer,32
suggests that cultural differences in spirituality, religious coping, and social support may benefit black patients who are nearing death more than white patients. This stands in contrast to racial differences in health-related QOL generally.45
Given the relatively small sample of black patients, future research is needed to replicate these findings in a larger, more heterogeneous sample. Doing so would allow for testing of a fully adjusted model and/or interaction terms and a more complete accounting of geographic area–based effects on patient preferences and care received (eg, clustered analysis or geocoding). This study did not measure clinician awareness of the patients' preferences or provide clinicians information regarding the patients' preferences, limiting our ability to comment on these issues. However, clinician awareness of the study would likely increase, rather than decrease, interest in patient preferences and EOL care. We also do not have information regarding transfers between facilities or the role or availability of primary care physicians. Finally, participants must have agreed to participate in the study, and although participants did not significantly differ from nonparticipants with respect to measured demographic variables, it is unknown whether participants differed from nonparticipants with respect to their preferences for intensive EOL care or the care they ultimately received.
Despite these limitations, this study represents one of the most detailed, quantitative evaluations of prospective predictors of EOL care among black and white patients who are terminally ill to date. It demonstrates important influences on the receipt of intensive EOL care among white patients with advanced cancer and highlights the racially disparate effects of these variables on EOL care, reinforcing the need for future research to understand which factors are important and predictive in black patients' EOL decision nmaking to inform clinical practice, improve communication, and ensure quality EOL care.