To our knowledge, this is the first study to explore patient preferences for the content and structure of end-of-life discussions, with a focus on understanding cultural differences that could affect end-of-life decision making. We compared the preferences of 2 different ethnic and socioeconomic groups cared for in different practice settings. A variety of themes that were important to participants when describing ideal end-of-life communication were identified and we observed notable differences between the groups (see ). The results of this study serve to confirm some of the differences in cultural preferences and values found elsewhere in the medical literature. In addition, this study offers new insight into how those preferences and values may be addressed when engaging in end-of-life communication, and offers novel directions for further research aimed at enhancing communication with patients and their families.
Several key differences concerning preferred structural components of end-of-life communication were identified between the non-Hispanic white and African-American groups. The non-Hispanic white groups were more exclusive when selecting family members to participate, were more interested in consultation from specialists, and were less interested in participation from spiritual representatives. Differences were also identified in the ideal content of optimal end-of-life discussions. While both groups believed that advance directives are an important feature of end-of-life care and expressed a strong desire to follow the patient's wishes, non-Hispanic white groups expressed a preference for more information about the patient's medical condition, treatment options, and quality of life. Conversely, the African-American groups stressed the importance of spirituality and prayer in decision making, and the need for health care workers to partner with spiritual representatives to improve communication. The central role of spirituality in end-of-life decision making affirmed previous studies about the importance of faith in the healing process among African Americans.30–32
The groups expressed different underlying values that impact the process of end-of-life communication. The African-American groups expressed more concerns about trust in the physician and health care system and emphasized a need to feel respected by health care workers. African-American distrust for the predominantly non-Hispanic white medical system has been described as the legacy of decades of abuse, discrimination, and denial of care that continues with ongoing reports of disparities in the quality and access to health care.33–35
Acknowledging distrust and maintaining a respectful approach to end-of-life discussions may improve communication and facilitate decision making.
The African-American and non-Hispanic white groups expressed differing opinions about the relative importance of protecting quality of life versus the protection of life itself. Several studies support the finding that duration of life is often more valued than quality of life in African Americans.7,36,37
Practitioners may choose to discuss these topics with patients and their families to better understand the values that influence their decision-making strategies and information needs in end-of-life care. Practitioners should also consider how to best communicate when a patient's desire for information and underlying values conflict with the practitioner's perceptions of appropriate care.38
Our study is limited by the fact that we were unable to isolate the effects of ethnicity, socioeconomic status, education, or other social characteristics as indicators of communication beliefs. While the groups were assembled on the basis of the members' ethnicity, it is likely that a number of characteristics influenced the differences seen, and it is not possible to attribute differences to ethnicity alone. The results should not be used to apply stereotyped communication blueprints to patients of a specific ethnicity, socioeconomic status, or any other specific characteristics. Rather, the data generated in this study are best used to stimulate dialogue, encourage exploration of communication preferences, and foster further research. Until more is known, providers may consider exploring some of the issues described as a mechanism to better understand their patients' needs. A simplified model identifying some of the key areas that cultural diversity impacted communication preferences is presented in .
Possible concerns when engaging in end-of-life communication.
Our study highlights the need to further explore the communication preferences of patients from different social and ethnic groups. The participants in these groups represented only two ethnicities and differed significantly in socio-economic resources. Further study with these and other ethnic groups should be conducted, controlling for socio-economic status, to more fully evaluate ethnic variation in end-of-life communication preferences. Clinicians and researchers should directly ask patients and their families to describe how practitioners might improve the communication process to provide patients with the highest quality end-of-life care.