Bronwynne Evans, PhD, RN, FAAN and David W. Coon, PhD, College of Nursing & Health Innovation, Arizona State University
|TIPS FOR SUPPORTING ETHNICALLY, RACIALLY, AND CULTURALLY DIVERSE PATENTS AND FAMILIES AT THE END OF LIFE
Ethnic and racial groups that share a sense of history, tradition, identity, languages, and dialects exist within cultures that are comprised of behavior patterns, symbols, and values that differentiate them from other groups. An individual's sense of racial and ethnic identity, however, can fluctuate across the lifespan according to a variety of factors, including socioeconomic status and setting. As a result, ethnic and racial groups are not monolithic. In fact, there may often be more intra-group, than inter-group, variation.
Ethnicity, race, and culture are often omitted in discussions about end of life (EOL) issues. Including them can be challenging because of the aforementioned intra-group variations, which makes it difficult to characterize these differences in EOL perceptions into tidy boxes.
Nevertheless, as a "shorthand" measure for clinicians, we can compare the general, overall current knowledge about the EOL perceptions of four groups (African Americans, Hispanic/Latino Americans, Asian Americans, and Native Americans (Table 1). It is notable, however, that little quality research is available about perceptions of some aspects of EOL issues in these groups, so some cells in Table 2 indicate a lack of available data or lack of applicability.
|Table 1. Perceptions Regarding Key EOL Issues in Four American Groups|
|Ethnic/Racial/Cultural Group||Family-Centered Decision Making||Non-Disclosure of Illness to Others||Preferred Caregiver||
Advanced Directives (Compared to Anglos)
Desire for Aggressive Treatment
|African American||Yes||Yes||Family||Less likely||Yes|
|Hispanic/Latino American||Yes||Yes||Family||Less likely||Yes|
|Asian American||Yes||Yes||Family||Less likely||Varies with acculturation|
|Native American||Yes||Yes||Family||Less likely||Traditional treatment|
|Table 2. Comparison of Perceptions: Caregiver Stress/Benefits, Religious Faith, and Suffering|
|Group||Caregiver Stress||Benefits of Caregiving||Emphasis on Religious Faith||View of Suffering|
Yes, but less than Anglos
|Yes||More than Anglos or Hispanic/Latinos||God's plan|
Yes, but less than Anglos
|Asian Americans||Yes; similar to Anglos||Yes||No data available||No data available|
|Native Americans||Yes; similar to Anglos||Yes||Traditional ceremonies||No data available|
Perceptions of End-of-Life Issues
Like many underserved populations, the four major ethnic/racial/cultural minority groups discussed here tend to prefer family-centered collective decision-making and that family members provide care for aging family. They are less likely than Anglos (non-Hispanic Whites) to complete advance directives.
Hispanic/Latinos fall between Anglos and African Americans in their attitudes toward aggressive treatments such as life support.
Asian American families may not disclose a terminal illness because they believe that talking about death may cause it, and their preferences for aggressive treatment vary with acculturation. They are less knowledgeable about advance directives, and are less likely to complete them than Anglos.
While tribal communities vary, Native American families also tend to avoid discussions of death and dying but will provide tribal support of patients and families at the EOL. They will also normalize death as part of the life cycle, and incorporate traditional knowledge and ceremonies into the EOL through home and community-based care.
Perceptions of the Health Care System
Trust in the health care system is often low for African American and Hispanic/Latinos, and this lack of trust may extend to poor quality patient-clinician relationships. Fear of denial of treatment or experimentation during routine care stems from a long history of societal discrimination, health disparities, and unpleasant experiences such as inadequate pain management or stereotyping. Successful patient-clinician communication about EOL treatment and caregiver needs is thought to rest on racial and ethnic concordance with clinicians, but many individuals from ethnic or racial minorities have little or no experience with clinicians of their own background.
Additionally, the Hispanic/Latino experience is affected by acculturation, with less acculturated families preferring more aggressive services.
Similar to African Americans and Hispanic/Latinos, Native Americans fear being denied treatment, particularly in certain regions of the country, and may have little contact with ethnically or racially concordant clinicians. In addition, aggressive treatment varies with acculturation in Asian Americans.
All four groups report experiencing communication problems with clinicians based on language and/or culture. In general, underserved patients and families with limited English proficiency achieve better clinical outcomes and greater patient satisfaction when professional interpreters are used to promote accurate communication.
Caregiving, Religious Faith, and Suffering
African Americans may emphasize faith and spirituality more than Hispanic/Latinos or Anglos, and they may view suffering as an act of faith or part of God's plan. Like African Americans, Hispanic/Latinos report family caregiving as less stressful and more satisfying than do Anglos, using religious activities, often a part of daily life, as a coping strategy. Asian Americans and Native Americans, while accepting the stressful role of caregiving, also acknowledge greater rewards than Anglo counterparts (Table 2).
What to Do?
When discussing EOL issues with patients of different backgrounds, reflect on your own biases that may affect your interactions. Learn about cultural practices and beliefs of your patient population, elicit the perceptions and needs of individual patients, and avoid generalized assumptions.
Use certified interpreters when interacting with patients who are not proficient in your language. It is not appropriate to use relatives, especially minors, or those who might benefit financially from a person's death, as interpreters in EOL discussions.
Finally, be sure to explain complex EOL issues in simple terms so that patients and families can make informed decisions about EOL care. Other suggestions about what to do are shown in the "Tips."
References and Resources
- Johnson K. Racial and ethnic disparities in palliative care: NIA White Paper. J Palliative Med, 2013; 16(11): 1329-1334.
- Kwak J, et al Current research findings on end-of-life decision making among racially or ethnically diverse groups. Gerontologist; 2005:45:634-41.
- Mack JW, et al. Racial disparities in the outcomes of communication on medical care received near death. Arch Intern Med. 2010; 170(17), 1533-40.
- Silva M, Genoff M, Zaballa A, et al . Interpreting at the end of life: A systematic review of the impact of interpreters on the delivery of palliative care services to cancer patients with limited English proficiency. J Pain Symptom Manage. 2016;51(3):569-80.
- Smith AK., McCarthy EP, et al Racial and ethnic differences in advance care planning among patients with cancer: impact of terminal illness acknowledgment, religiousness, and treatment preferences. J Clin Oncol. 2008; 26(25), 4131-4137.