Abstract and Commentary
Thomas, R., Wilson, D. M., Justice, C., Birch, S., & Sheps, S. (2008). A literature review of preferences for end-of-life care in developed countries by individuals with different cultural affiliations and ethnicity. Journal of hospice & Palliative Nursing, 10, 142-161.
Author’s Abstract
Anticipatory decision making about end-of-life care (EOL care) is predominantly a North American concept. Researchers investigated four themes: advance directives, life support, communication, and decision making. Substantial differences exist among cultural groups in the percentages with living wills/advance directives, and they are less frequent for those with family-centered decision making or with less trust in the healthcare system. African Americans prefer life support more than Asian Americans or European Americans. Cultural groups vary in their preferences about communicating terminal diagnoses. Non-English-speaking patients perceive communication as a barrier to care. Mexican Americans, Korean Americans, and Canadian First Nations emphasize family-based decision making at the end of life, and European Americans emphasize patient autonomy.
Commentary by Dana Rutledge, RN, PhD, Nursing Research Facilitator
In this systematic review
[1], authors carefully describe the procedure they used to find studies to critically appraise. They focused on studies with data concerning preferences of minority or cultural groups about EOL care. Thomas and colleagues evaluated 26 varied studies that collected data from quite heterogeneous samples (from nursing home residents to persons 50 and older who died as inpatients in one California hospital). Their content analysis of study findings led to four themes, which they describe well.
Advanced directives (ADs) were addressed primarily in US studies and focused on living wills or durable power of attorney. While many in most cultural groups were aware of ADs, several samples indicate lack of awareness in groups of Mexican Americans and the majority of some Asian Americans. Fewer persons sampled actually had an AD (0-28%) while more had a health care proxy named (but not necessarily a durable power of attorney). Attitudes towards ADs varied with groups less likely to desire an AD having strong religious believes and rituals. One international study indicated that ADs are primarily an American phenomenon although people in other countries believe they are a good idea.
Mostly in US studies, cultural group preferences for life support were gathered via descriptions of how many people actually had DNR orders along with attitudes towards DNR in different cultural groups. Findings differed across studies with one study showing that Asian Americans prefer no resuscitation and another showing that Japanese prefer DNR while Chinese do not. African Americans and Mexican American were most likely to desire life support while European Americans were least likely. Preferences of family members influenced decisions about life support and disagreements existed between some individuals and their families.
Communication about preferences for EOL care was studied in several countries. Mention was made of the “Western way” of informing people about terminal illnesses as being abrupt and even terrifying. Barriers to communication include language issues, pressures on family and caregivers, lack of choice of care options, and fear of signing documents. Facilitators include inclusion of family members in discussions and availability of medical specialists. Thus, “cultural group understandings and preferences are a major potential influence on the type of communication that occurs around EOL care issues” (p. 154).
The role of family in EOL decision making varies across cultural groups with several groups desiring family-centered decision making (African American, Mexican/Latin American, Japanese, Arab American) and others autonomous decision making (European American, German). Many groups dislike using sedation as a medical intervention since it blocks clear thinking and somnolence/confusion.
Conclusions drawn are difficult since most studies analyzed investigated cultural differences within one country (usually US) or focused on one aspect of EOL care. However, all highlight the importance of being aware of and sensitive to cultural group preferences. Those caring for persons at the EOL need to “ask pertinent questions and be willing to listen to and heed the answers” (p. 160).
References
Cook, D. J., Mulrow, C. D., & Haynes, R. B. (1999). Systematic reviews: Synthesis of best evidence for clinical decisions. Annals of Internal Medicine, 126, 376-380.
[1] Systematic review - involves the application of scientific strategies, in ways that limit bias, to the assembly, critical appraisal, and synthesis of all relevant studies that address a specific clinical question; a type of systematic review, meta-analysis uses statistical methods to combine and summarize findings from several studies; useful characteristics of a systematic review: clear reporting of information obtained using rigorous methods (Cook, Mulrow, & Haynes, 1999)
