Toward Culturally Competent Care at the End-of-Life: A Systematic Review of End-of Life Care Studies with Ethnic Minority Groups

Background and Purpose: Given the increasing proportion of minorities in the older adult population, the demand for culturally competent knowledge related to End-of Life (EOL) care has been growing. Despite increasing attention to EOL care issues in prior research, the findings tend to be fragmented. The purpose of this study was to systematically reviewing the literature on EOL care with ethnic minority groups in order to develop implications for culturally competent practice and identify further research directions in EOL care.

Method: An extensive literature search was conducted using electronic databases such as Abstracts in Social Gerontology, Academic Search Premier, AHFS Consumer Medication Information, Family & Society Studies Worldwide, Health Business FullTEXT, Health Source, Nursing/Academic Edition, MEDLINE, PsycINFO, Social Work Abstracts, and SocINDEX with full text. The following combination of terms was used as keywords: end of life, advanced care plan, hospice, palliative care, ethnic minority, and cultural competence. Three inclusion criteria were used: 1) primary evidence, 2) studies conducted in the U.S, and 3) published since 2000. Of 36 research articles identified, 22 were quantitative, 11 were qualitative, and three were mixed methods studies.

Results: Four topic domains were identified: EOL care services, EOL care attitudes, EOLdecision-making, and  preferred place of death. In EOL care services, most research focused on advanced directives and hospice care, whereas few studies discussed EOL treatment preferences. Some common findings across different ethnic minorities were identified, showing lower use of EOL care services and less positive attitudes toward EOL care compared to Whites. However, different factors affected low use and negative attitudes of EOL care among ethnic minorities. Mistrust of health care professionals and previous negative experiences with EOL services were identified as barriers for EOL care services for Blacks, whereas lack of knowledge prevented Asian Americans from using EOL care services. In the EOL decision-making process, family members played an important role for all ethnic minorities; however, spirituality/religion influenced more Latino and Black than Asian Americans. Lastly, African American and Hispanic/Latinos preferred to die in in-patient settings. However, Asian Americans showed within-group variations in their preference for place of death.

Implications: Through synthesis of the findings reported in the literature, this study suggested similarities and differences across ethnic minority groups in EOL care. Given the consistently low use of EOL care services, health care professionals need to improve accessibility of such services for ethnic minorities. It is important, however, to be aware of different barriers for each ethnic group, and to implement ethnic-specific educational programs. Moreover, given the important role of family members, it is recommended that family members be included in EOL education programs. Further research in other areas of EOL care such as preference for EOL treatments is needed to expand our understanding of EOL care needs for ethnic minorities.