As in other studies, African Americans in our sample were less likely than Whites to have an advance directive and had less favorable beliefs and attitudes about hospice.3, 4, 10, 11, 13 - 16
We identified beliefs and values among African Americans which may explain these differences, including greater preferences for life-sustaining therapies, less comfort discussing death, greater distrust of the healthcare system, and spiritual beliefs which may conflict with the goals of hospice care. None of these factors alone explained racial differences in either possession of an advance directive or attitudes toward hospice, rather these differences were explained by a combination of beliefs and values.
These findings suggest that frequently documented racial differences in approaches to end-of-life care are a proxy for a combination of shared beliefs, preferences, and values. Although some expert groups recommend the use of advance directives, and there is data supporting improvements in end-of-life care among hospice enrollees, including better management of pain and emotional needs and greater satisfaction with care, our results suggest that advance directives and hospice may not be congruent with the cultural beliefs of some older African Americans.21 - 25
This work has implications for the development of culturally-competent policies and programs which may improve end-of-life care.
In this study, African Americans were less comfortable discussing death, more likely to want life-prolonging therapies and more likely to agree that those who believe in God do not have to plan for end-of-life care; these factors partly explained the relationship between race and possession of an advance directive. Although interventions in church or community settings have increased dialogue around and comfort discussing end-of-life care, many of these programs have not increased the number of African Americans completing advance directives.10, 26
This is not surprising since they only partly address potential cultural barriers. Further, given the lack of data supporting the effectiveness of advance directives in improving end-of-life care and the cultural beliefs identified in this study and others, emphasis on the process of advance care planning rather than the completion of documents seems more likely to result in the desired outcome—opportunities for those who want to do so to express their preferences for end-of-life care should they become incapacitated.27
For African Americans, in addition to community and church-based discussions, culturally sensitive advance care planning should consider the importance of family in decision-making and the value of informal ways of expressing preferences, including oral and written instructions or even deferral of decisions to family, and greater emphasis on understanding and respecting preferences for care whatever they are and however they are expressed in the context of patients' values and goals.
Although a number of studies document lower rates of hospice enrollment among African Americans, very little has been published regarding interventions to increase access to hospice for African Americans.6, 7
African Americans in our study expressed less favorable beliefs about hospice, including the belief that “hospice care means you get no treatment”. These beliefs were partly explained by distrust of the healthcare system, preferences for life-sustaining therapies, and spiritual beliefs. Not surprisingly, issues of trust may be especially important in determining attitudes toward hospice since the hospice philosophy of care focuses on palliative rather than more traditional cure-directed therapies.
In one study, a home-based palliative care program for patients with advanced serious illness resulted in an increase in the number of African Americans hospice enrollees.28
The authors speculate that the program's success was due to the promotion of unrestricted choice in treatment modalities in the home-based palliative care program. These findings and those of this analysis emphasize the need for healthcare delivery models which support a range of values, beliefs, and preferences while ensuring access to high quality palliative and supportive care. Such programs may not only more readily accommodate patients' preferences but may also cultivate trust in the healthcare system by allowing on-going cure-directed therapies. Hospice bridge programs and open access hospice programs, both of which allow patients to receive palliative care while continuing to receive life-prolonging therapies, are examples of healthcare delivery models which may be more attractive to some older African Americans although currently data regarding their effectiveness in meeting the needs of African Americans is lacking.29, 30
Common to other successful programs designed to improve palliative care for African Americans is an emphasis on community partnerships.31, 32
These partnerships foster sensitivity to many of the cultural beliefs identified in this study by recognizing the importance of spirituality through church involvement, facilitating access to medical and nonmedical services, respecting patients' preferences, and showing sensitivity to beliefs about death and dying by focusing on family involvement and advance care planning as a process of comprehensive care.
This study has some limitations. Our sample included older adults receiving primary care at two clinic sites affiliated with one academic medical center in the southeast. These results may not be generalizable to other populations of older adults. Another concern is the response rate. Only one-third of those contacted agreed to participate and African Americans made up 2/3 of those who declined participation. Although all African Americans were contacted by an African-American interviewer, interviewer-subject race concordance did not appear to improve our response rate as noted in previous studies.33, 34
Other studies have also documented lower rates of research participation among African Americans.34, 35
. It is possible that older African Americans and Whites who participated were more similar than in the general population with respect to their comfort discussing end-of-life care and beliefs about participating in research which are thought to relate to trust in the healthcare system. If this is true, our results may underestimate the true differences that exist in the general population between the two racial groups in cultural beliefs and values related to end-of-life care. Another limitation is the absence of validated measures examining cultural differences in approaches to end-of-life care. When possible, we used or modified existing measures; however, to address our study objectives, we developed many questions based on published literature. Questions were reviewed for face validity and reliability. The differences in cultural beliefs found in our study are consistent with those reported in other studies.
We attempted to identify a common set of cultural beliefs among African Americans which may influence end-of-life care. However, individual differences in beliefs exist within any culture due to differences in socioeconomic status, age, gender, location, and experiences. These within-culture differences are evident in our results. Although there were statistically significant differences in mean survey scores between the African-American and White samples, there was a wide range of scores with some overlap among individuals in the two different racial groups (). These findings highlight the need for healthcare providers to be sensitive to cultural differences while avoiding stereotyping based on race and ethnicity.
In the absence of a one-size-fits all approach to end-of-care, one-size-fits all healthcare delivery models, programs, and policies will exclude large numbers of patients facing life-limiting illness, especially in an increasingly ethnically diverse and aging society. The challenge is for healthcare providers, researchers, and policy makers to design, test, and implement programs which accommodate a range of individual and cultural beliefs, values, and preferences.