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Facilitators and Barriers for Advance Care Planning Among Ethnic and Racial Minorities in the U.S.: A Systematic Review of the Current Literature

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Abstract

Growing evidence suggests a low engagement in advance care planning (ACP) among ethnic minorities in the U.S. The purpose of this study was to synthesize findings from prior research about ACP among ethnic minorities. An extensive literature search was conducted using multiple electronic databases. After applying inclusion criteria, 26 studies were included. Four categories of facilitators and barriers to ACP were identified: (1) Socio-demographic factors, (2) health status, literacy and experiences, (3) cultural values, and (4) spirituality. Socio-demographic factors showed inconsistent findings regarding their association with ACP engagement. Worse health status and knowledge about ACP are common facilitators across ethnic minority groups, whereas mistrust toward the health care system was a barrier only for Blacks. Collectivistic cultural values influenced ACP engagement among Latinos and Asian Americans; however, spirituality/religion played an important role among Blacks. The implications for culturally competent approaches to promote ACP and future research directions are discussed.

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References

  1. Levi BH, Green MJ. Too soon to give up: re-examining the value of advance directives. Am J Bioeth. 2010;10:3–22.

    Article  PubMed  PubMed Central  Google Scholar 

  2. National Institute on Aging. Advance Care Planning Tips from the National Institute on Aging. 2014. Retrieved from https://www.nia.nih.gov/health/publication/advance-care-planning.

  3. Ko E, Berkman CS. Advance directives among Korean American older adults: knowledge, attitudes, and behavior. J Gerontol Soc Work. 2012;55:484–502.

    Article  PubMed  Google Scholar 

  4. Sudore RL, Schilinger D, Knight SJ, Fried TR. Uncertainty about advance care planning treatment preferences among diverse older adults. J Health Commun. 2010;15:159–71.

    Article  PubMed  PubMed Central  Google Scholar 

  5. Bullock K. The influence of culture on end-of-life decision making. J Soc Work End Life Palliat Care. 2011;7:83–98.

    Article  PubMed  Google Scholar 

  6. Bhopal R. Glossary of terms relating to ethnicity and race: for reflection and debate. J Epidemiol Community Health. 2004;58:441–5.

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  7. Census US. Race and ethnicity. Retrieved from https://www.census.gov/mso/www/training/pdf/race-ethnicity-onepager.pdf.

  8. AHRQ (Agency Healthc. Res. Quality). 2014 National Healthcare Quality and Disparities Report. Rockville, MD: AHRQ, US Department of Health and Human Service. 2015. http://www.ahrq.gov/sites/default/files/wysiwyg/research/findings/nhqrdr/nhqdr14/2014nhqdr.pdf.

  9. Wirth L. The problem of minority groups. The science of man in the world crisis, edited by R. Linton; 1945, p. 347. In Hacker HM, editor. Women as a minority group. Deland, Everett/Edwards; 1951.

  10. CDC (Cent. Dis. Control Prev.). Minority health: definitions. Updated Feb. 2014, CDC, Atlanta. 2014. http://www.cdc.gov/minorityhealth/populations/REMP/definitions.html.

  11. Rao JK, Anderson L, Lin F, Laux J. Completion of advance directives among U.S. consumers. Am J Prev Med. 2014;46:65–70.

    Article  PubMed  PubMed Central  Google Scholar 

  12. Kulkarni SP, Karliner LS, Auerbach AD, Pérez-Stable EJ. Physician use of advance care planning discussions in a diverse hospitalized population. J Immigr Minor Health. 2011;13:620–4.

    Article  PubMed  Google Scholar 

  13. Brinkman-Stoppelenburg A, Rietiens J, van der Heide A. The effects of advance care planning on end-of-life care: a systematic review. Palliat Med. 2014;8:1000–25.

    Article  Google Scholar 

  14. Uman L. Systematic review and meta-analyses. J Can Acad Child Adolesc Psychiatry. 2011;20:57–9.

    Article  PubMed  PubMed Central  Google Scholar 

  15. Bullock K. Promoting advance directives among African Americans: a faith-based model. J Palliat Med. 2006;9:183–95.

    Article  PubMed  Google Scholar 

  16. Huang CH, Crowther M, Allen RS, DeCoster J, Kim G, Azuero C, Ang X, Kvale E. A pilot feasibility intervention to increase advance care planning among African Americans in the deep south. J Palliat Med. 2016;19:164–73.

    Article  PubMed  Google Scholar 

  17. Lee MC, Hinderer KA, Friedmann E. Engaging Chinese American adults in advance care planning: a community-based, culturally sensitive seminar. J Gerontol Nurs. 2015;41:17–21.

    Article  PubMed  Google Scholar 

  18. Sun A, Bui Q, Tsoh JY, Gildengorin G, Chan J, Cheng J, Lai K, McPhee S, Nguyen T. Efficacy of a church-based, culturally tailored program to promote completion of advance directives among Asian Americans. J Immigr Minor Health. 2017;9:381–91.

  19. Heyman JC, Gutheil IA. Older Latinos’ attitudes toward and comfort with end-of-life planning. Health Soc Work. 2010;35:17–26.

    Article  PubMed  Google Scholar 

  20. Braun KL, Karel H, Zir A. Family response to end-of-life education: differences by ethnicity and stage of caregiving. Am J Hosp Palliat Care. 2006;23:269–76.

    Article  PubMed  Google Scholar 

  21. Carr D. Racial differences in end-of-life planning: why don’t Blacks and Latinos prepare for the inevitable? OMEGA-J Death Dying. 2011;63:1–20.

    Article  Google Scholar 

  22. Carr D. Racial and ethnic differences in advance care planning: identifying subgroup patterns and obstacles. J Aging Health. 2012;24:923–47.

    Article  PubMed  Google Scholar 

  23. Huang IA, Neuhaus JM, Chiong W. Racial and ethnic differences in advance directive possession: role of demographic factors, religious affiliation, and personal health values in a national survey of older adults. J Palliat Med. 2016;19:149–56.

    Article  PubMed  PubMed Central  Google Scholar 

  24. Kataoka-Yahiro MR, Conde FA, Wong RS, Page V, Peller B. Advance care planning among Asian Americans and Native Hawaiians receiving haemodialysis. Int J Palliat Nurs. 2010;16:32–40.

    Article  PubMed  Google Scholar 

  25. Ko E, Lee J. Completion of advance directives among Korean American and non-Hispanic white older adults. Res Aging. 2010;32:618–44.

    Article  Google Scholar 

  26. Smith AK, Davis RB, Krakauer EL. Differences in the quality of the patient–physician relationship among terminally ill African-American and White patients: impact on advance care planning and treatment preferences. J Gen Intern Med. 2007;22:1579–82.

    Article  PubMed  PubMed Central  Google Scholar 

  27. Wittenberg-Lyles E, Villagran MM, Hajek C. The impact of communication, attitudes, and acculturation on advance directives decision-making. J Ethn Cult Divers Soc Work. 2008;17:349–64.

    Article  Google Scholar 

  28. Dobbs D, Park NS, Jang Y, Meng H. Awareness and completion of advance directives in older Korean-American adults. J Am Geriatr Soc. 2015;63:565–70.

    Article  PubMed  PubMed Central  Google Scholar 

  29. Gao X, Sun F, Ko E, Kwak J, Shen HW. Knowledge of advance directive and perceptions of end-of-life care in Chinese-American elders: the role of acculturation. Palliat Support Care. 2015;13:1677–84.

    Article  PubMed  Google Scholar 

  30. Kim M, Foreman MD. Korean American adult children’s beliefs about what their parents want at the end of life. Clin Gerontol. 2011;34:305–18.

    Article  Google Scholar 

  31. Kelley AS, Wenger NS, Sarkisian CA. Opiniones: end-of-life care preferences and planning of older Latinos. J Am Geriatr Soc 2010; 58:1016–109.

    Article  Google Scholar 

  32. Van Dorn RA, Swanson JW, Swartz MS. Preferences for psychiatric advance directives among Latinos: views on advance care planning for mental health. Psychiatr Serv. 2009;60:1383–5.

    Article  PubMed  PubMed Central  Google Scholar 

  33. Bito S, Matsumura S, Singer MK, Meredith LS, Fukuhara S, Wenger NS. Acculturation and end-of-life decision making: comparison of Japanese and Japanese-American focus groups. Bioethics. 2007;21:251–62.

    Article  PubMed  Google Scholar 

  34. Kwak J, Salmon JR. Attitudes and preferences of Korean-American older adults and caregivers on end-of-life care. J Am Geriatr Soc. 2007;55:1867–72.

    Article  PubMed  Google Scholar 

  35. Gutheil IA, Heyman JC. “They don’t want to hear us” Hispanic elders and adult children speak about end-of-life planning. J Soc Work End Life Palliat Care. 2006;2:55–70.

    Article  PubMed  Google Scholar 

  36. Boucher NA. Faith, family, filiality, and fate Dominican and Puerto Rican elders’ perspectives on end-of-life decisions. J Appl Gerontol. 2017;36:351-72.

  37. Carrion IV, Nedjat-Haiem FR, Martinez-Tyson D, Castañeda H. Advance care planning among Colombian, Mexican, and Puerto Rican women with a cancer diagnosis. Support Care Cancer. 2013;21(5):1233–9.

    Article  PubMed  Google Scholar 

  38. Cohen MJ, McCannon JB, Edgman-Levitan S, Kormos WA. Exploring attitudes toward advance care directives in two diverse settings. J Palliat Med. 2010;13:1427–32.

    Article  PubMed  Google Scholar 

  39. Snistveit B, Oliver S, Vojtkova M. Narrative approaches to systematic review and synthesis of evidence for international development policy and practice. J Dev Effect. 2012;4:409–29.

    Article  Google Scholar 

  40. Ashton C, Haidet P, Paterniti D, Collins T, Gordon H, O’Malley K, Petersen P et al. Racial and ethnic disparities in the use of health services. J Gen Intern Med. 2003;18:152–246.

    Article  Google Scholar 

  41. Mead EL, Doorenbos AZ, Javid SH, Haozous EA, Alvord LA, Flum DR, Morris AM. Shared decision-making for cancer care among racial and ethnic minorities: a systematic review. Am J Public Health. 2013;103:e15–29.

    Article  PubMed  PubMed Central  Google Scholar 

  42. Hong M, Casado B, Harrington D. Psychometric validation of the Korean version of the Lubben Social Network Scale. Clin Geronol. 2011;34:319–34.

    Article  Google Scholar 

  43. Shelton RC, Winkel G, Davis CN, Roberts N, Valdimarsdottir H, Hall S, Thompson H. Validation of the group-based medical mistrust scale among urban Black men. J Gen Intern Med. 2010;25:549–55.

    Article  PubMed  PubMed Central  Google Scholar 

  44. Casado BL, Lee S, Hong M, Hong S. The experience of family caregivers of older Korean Americans with dementia symptoms. Clin Gerontol. 2015;38:32–48.

    Article  Google Scholar 

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Correspondence to Michin Hong.

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Hong, M., Yi, EH., Johnson, K.J. et al. Facilitators and Barriers for Advance Care Planning Among Ethnic and Racial Minorities in the U.S.: A Systematic Review of the Current Literature. J Immigrant Minority Health 20, 1277–1287 (2018). https://doi.org/10.1007/s10903-017-0670-9

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  • DOI: https://doi.org/10.1007/s10903-017-0670-9

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