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End-of-Life Care Considerations for the Hispanic Patient in the United States

  • Daniela Wells MD
  • Yara Moustafa MD PhD
  • Adriana R Vasquez MD

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Background: The Hispanic population in the United States (US) is growing and is now its largest ethnic minority (1). By 2035, it is expected that nearly 1 in 4 living in the US will be Hispanic (2). While there is no truly normative identity label to use, we will use ‘Hispanic’ in this Fast Fact, and use it to refer to people from, or with close cultural/familial ties to, the Spanish-speaking countries of Central and South America, and the Caribbean. Not every person who meets this definition would label themself as “Hispanic” and patients use diverse terminologies to self-identify. This includes broad identity labels such as “Latino” (which the US Census Bureau uses synonymously with Hispanic) (3); identities related to place of origin such as “Cuban” or “Mexican American”; and indigenous identities (e.g., Zapotec). Most Hispanic individuals in the US identify as Mexican (62%); this is followed by Puerto Rican (10%), Cuban (4%), Salvadoran (4%) and Dominican (3.5%). While English proficiency varies among subgroups, about 28% percent of Hispanics state that they are not fluent in English (4).

Importance of cultural humility and responsiveness: By necessity this Fast Fact will present generalizations about Hispanic patients and families. However, the Hispanic community is incredibly diverse, and includes people from multiple races, religions, socioeconomic classes, citizenship statuses, and cultural identities. Therefore, nothing discussed here will be true of all Hispanic patients. Clinicians must always approach patients as individuals and use cultural humility and inquiry regardless of cultural background (see Fast Fact #216). If clinicians need to use ethnic identification labels with patients, they should directly ask patients what terms they prefer.

Hispanic patients and end-of-life (EOL) care: Decades of research have shown significant differences in EOL care for Hispanic patients compared to the population as a whole and white non-Hispanic people. Hispanic patients are under-represented in the hospice population, at just 6.7% (5). Hispanic patients are more likely to die full code, less likely to have discussions regarding prognosis and are far less likely to have heard about hospice care than their non-Hispanic white counterparts (6,7). Reasons for these differences are numerous and vary but likely include barriers from being un- or under-insured, poverty, racism/discrimination, and language differences (8).

Cultural considerations: Hispanic cultures tend to value collective decision-making processes. Family members may have extensive co-involvement in EOL decisions alongside the patient. It is not uncommon for Hispanic caregivers to ask to shield the patient from being informed of their terminal diagnosis, especially for older patients. Families may consider providing hope and encouragement to the patient as being more important than frank prognostic discussions (9). Some patients may choose to not receive a prognostic disclosure from their clinicians, instead designating a person they trust to discuss such manners. Paternalistic approaches to healthcare decision-making are common in Hispanic societies and it is common for Hispanic patients to prefer physician-directed decision-making (10).

Pearls for the clinician

  • Carefully explore with every Hispanic patient & family their preferences for information (especially about prognosis) and approach to decision-making (especially the roles of the clinician and family), regardless of your or the patient’s specific cultural background.
  • Welcome family presence at the bedside and at care conferences, even if the patient requests the presence of many family members. 
  • Ask about the role of religion and spirituality in the patient’s/family’s life. Offer spiritual care resources.
  • Do not assume non-native English speakers are comfortable having complex, high stakes medical discussions in English, even if they seem proficient. Some Hispanic patients will have limited experience receiving medical care in the US even if they are proficient in English and may benefit from skilled interpreters to navigate the information discussed.
  • Do not assume a patient nodding or saying they understand medical information means they do. Some patients signal understanding out of politeness and deference to an authority figure (11). Assess understanding by using ‘teach backs’ at regular intervals when discussing high stakes medical information.
  • Mistrust towards providers has been documented among underserved populations, which could significantly hinder communication and outcomes (8). Some systemic strategies that help improve access to care include recruiting community leaders, patient-led groups, and actively involving local or on-site allies to solidify networks with the community (6).

References

  1. Hispanic Health. Centers for Disease Control and Prevention, Office of Minority Health and Health Equity. (2015, May). Available at: https://www.cdc.gov/vitalsigns/hispanic-health/index.html. Accessed June 30, 2023.
  2. Nicholas Jones, Rachel Marks, Roberto Ramirez, Merarys Rios-Vargas. 2020 Census Illuminates Racial and Ethnic Composition of the Country. United States Census Bureau. Available at: https://www.census.gov/library/stories/2021/08/improved-race-ethnicity-measures-reveal-united-states-population-much-more-multiracial.html. Accessed June 20, 2023.
  3. Measuring Racial and Ethnic Diversity for the 2020 Census. United States Census Bureau. Available at:  https://www.census.gov/newsroom/blogs/random-samplings/2021/08/measuring-racial-ethnic-diversity-2020-census.html. Accessed June 23, 2023.
  4. Profile: Hispanic/Latino Americans. U.S. Department of Health and Human Services Office Minority Health. Available at: https://www.minorityhealth.hhs.gov/omh/browse.aspx?lvl=3&lvlid=64. Accessed June 30, 2023.
  5. Inclusion and Access Toolkit. Professional Development and Resource Series. October 2020. National Hospice and Palliative Care Organization. Available at: https://www.nhpco.org/wp-content/uploads/Inclusion_Access_Toolkit.pdf. Accessed June 30, 2023.
  6. Larson KL, Jewell GD, Maldonado MF, Braxton ME, Johnson LA. Call the Rezadora: aiding Latino families at the end of life. Hispanic Health Care International. 2022;20(2):147-155. doi:10.1177/15404153211028992
  7. Kawai F, Pan CX, Zaravinos J. Maw MM, Lee G. Do Hispanics prefer to be full code at the end of life? The impact of palliative care consults on clarifying code status preferences and hospice referrals in Spanish-speaking patients. Palliative & Supportive Care. 2021;19(2):193–197. https://doi.org/10.1017/S1478951520000425
  8. Bazargan M, Cobb S, Assari S. Discrimination and medical mistrust in a racially and ethnically diverse sample of California adults. Ann Fam Med. 2021; 19(1):4-15. https://doi.org/10.1370/afm.2632
  9. Barragan-Carrillo R et al. End-of-life care and advanced directives in Hispanic/Latinx patients: challenges and solutions for the practicing oncologist. The Oncologist. 2022; 27(12): 1074-80. , https://doi.org/10.1093/oncolo/oyac211
  10. Levinson W, Kao A, Kuby A, Thisted RA. Not all patients want to participate in decision-making. A national study of public preferences. J Gen Int Med.  2005; 20(6): 531-5. https://doi.org/10.1111/j.1525-1497.2005.04101.x
  11. Karliner LS, Jacobs EA, Chen AH, Mutha S. Do professional interpreters improve clinical care for patients with limited English proficiency? A systematic review of the literature. Health Ser Res.  2007; 42(2): 727-54. https://doi.org/10.1111/j.1475-6773.2006.00629.x

Conflicts of Interest: The authors have disclosed no relevant conflicts of interest.
Institutional Affiliations:  St Elizabeths Hospital, Washington, DC (DW); Mayo Clinic, Jacksonville, FL (YM, AV).
Version History:  Originally edited by Drew A Rosielle MD; first electronically published in July 2023.