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From Barriers to Assets: Rethinking factors impacting advance care planning for African Americans

  • Justin J. Sanders (a1), Kimberly S. Johnson (a2), Kimberly Cannady (a3), Joanna Paladino (a4), Dee W. Ford (a5), Susan D. Block (a1) and Katherine R. Sterba (a3)...
Abstract
Objective

We aimed to explore multiple perspectives regarding barriers to and facilitators of advance care planning (ACP) among African Americans to identify similarities or differences that might have clinical implications.

Method

Qualitative study with health disparities experts (n = 5), community members (n = 9), and seriously ill African American patients and caregivers (n = 11). Using template analysis, interviews were coded to identify intrapersonal, interpersonal, and systems-level themes in accordance with a social ecological framework.

Result

Participants identified seven primary factors that influence ACP for African Americans: religion and spirituality; trust and mistrust; family relationships and experiences; patient-clinician relationships; prognostic communication, care preferences, and preparation and control. These influences echo those described in the existing literature; however, our data highlight consistent differences by group in the degree to which these factors positively or negatively affect ACP. Expert participants reinforced common themes from the literature, for example, that African Americans were not interested in prognostic information because of mistrust and religion. Seriously ill patients were more likely to express trust in their clinicians and to desire prognostic communication; they and community members expressed a desire to prepare for and control the end of life. Religious belief did not appear to negate these desires.

Significance of results

The literature on ACP in African Americans may not accurately reflect the experience of seriously ill African Americans. What are commonly understood as barriers to ACP may in fact not be. We propose reframing stereotypical barriers to ACP, such as religion and spirituality, or family, as cultural assets that should be engaged to enhance ACP. Although further research can inform best practices for engaging African American patients in ACP, findings suggest that respectful, rapport-building communication may facilitate ACP. Clinicians are encouraged to engage in early ACP using respectful and rapport building communication practices, including open-ended questions.

Copyright
Corresponding author
Author for correspondence: Justin J. Sanders, M.D., M.Sc., Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, 450 Brookline Avenue, LW670, Boston, MA 02215. E-mail: Justin_sanders@dfci.harvard.edu
References
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Ahalt, C et al. (2012) “Knowing is better”: preferences of diverse older adults for discussing prognosis. Journal of General Internal Medicine 27(5), 568575.
Balboni, TA et al. (2013) Provision of spiritual support to patients with advanced cancer by religious communities and associations with medical care at the end of life. JAMA Internal Medicine 173(12), 11091117.
Balboni, TA et al. (2007) Religiousness and spiritual support among advanced cancer patients and associations with end-of-life treatment preferences and quality of life. Journal of Clinical Oncology 25(5), 555560.
Billings, JA and Bernacki, R. (2014) Strategic targeting of advance care planning interventions: the Goldilocks phenomenon. JAMA Internal Medicine 174(4), 620624.
Braun, UK et al. (2008) Voices of African American, Caucasian, and Hispanic surrogates on the burdens of end-of-life decision making. Journal of General Internal Medicine 23(3), 267274.
Bullock, K (2006) Promoting advance directives among African Americans: a faith-based model. Journal of Palliative Medicine 9(1), 183195.
Carr, D (2011) Racial differences in end-of-life planning: Why don't Blacks and Latinos prepare for the inevitable? Omega (Westport) 63(1), 120.
Carrion, IV, Park, NS and Lee, BS (2012) Hospice use among African Americans, Asians, Hispanics, and Whites: Implications for practice. American Journal of Hospice & Palliative Medicine 29(2), 116121.
Chiarchiaro, J et al. (2015) Prior advance care planning is associated with less decisional conflict among surrogates for critically ill patients. Annals of the American Thoracic Society 12(10), 15281533.
Crabtree, BF and Miller, WL (1992) Doing qualitative research. Newbury Park, CA: Sage Publications.
Daaleman, TP et al. (2008) An exploratory study of advance care planning in seriously ill African-American elders. Journal of the National Medical Association 100(12), 14571462.
Detering, KM et al. (2010) The impact of advance care planning on end of life care in elderly patients: Randomised controlled trial. BMJ 340, c1345.
Dupree, CY (2000) The attitudes of black Americans toward advance directives. Journal of Transcultural Nursing 11(1), 1218.
Ford, D et al. (2010) Factors associated with illness perception among critically ill patients and surrogates. Chest 138(1), 5967.
Gerst, K and Burr, JA (2008) Planning for end-of-life care - Black-white differences in the completion of advance directives. Research on Aging 30(4), 428449.
Hanchate, A et al. (2009) Racial and ethnic differences in end-of-life costs: Why do minorities cost more than whites? Archives of Internal Medicine 169(5), 493501.
Hauser, JM et al. (1997) Minority populations and advance directives: Insights from a focus group methodology. Cambridge Quarterly of Healthcare Ethics 6(1), 5871.
Hwang, SS et al. (2003) Knowledge and attitudes toward end-of-life care in veterans with symptomatic metastatic cancer. Palliative and Supportive Care 1(3), 221230.
Institute of Medicine (2015) Dying in America: Improving quality and honoring individual preferences near the end of life. Washington, DC: The National Academies Press.
Johnson, KS et al. (2008a) Racial differences in hospice revocation to pursue aggressive care. Archives of Internal Medicine 168(2), 218224.
Johnson, KS, Kuchibhatla, M and Tulsky, AA (2008b) What explains racial differences in the use of advance directives and attitudes toward hospice care? Journal of the American Geriatric Society 56(10), 19531958.
Johnson, RW et al. (2010) Differences in level of care at the end of life according to race. American Journal of Critical Care 19(4), 335343; quiz 344.
Kagawa-Singer, M and Blackhall, LJ (2001) Negotiating cross-cultural issues at the end of life: “You got to go where he lives.” JAMA 286(23), 29933001.
Loggers, ET et al. (2009) Racial differences in predictors of intensive end-of-life care in patients with advanced cancer. Journal of Clinical Oncology 27(33), 55595564.
Mack, JW et al. (2010a) Racial disparities in the outcomes of communication on medical care received near death. Archives of Internal Medicine 170(17), 15331540.
Mack, JW et al. (2010b) End-of-life discussions, goal attainment, and distress at the end of life: Predictors and outcomes of receipt of care consistent with preferences. Journal of Clinical Oncology 28(7), 12031208.
McLeroy, KR et al. (1988) An ecological perspective on health promotion programs. Health Education Quarterly 15(4), 351377.
Medvene, LJ et al. (2003) Promoting signing of advance directives in faith communities. Journal of General Internal Medicine 18(11), 914920.
Morgan, DL et al. (2013) Introducing dyadic interviews as a method for collecting qualitative data. Qualitative Health Research 23(9), 12761284.
Narasimhan, D et al. (2014) Advanced directives (AD) implementation is difficult near to end-of-life: Efforts must be directed while healthy and with capacity. Journal of the American Geriatric Society 62, S195.
Nath, SB et al. (2008) A place called LIFE: Exploring the advance care planning of African-American PACE enrollees. Social Work in Health Care 47(3), 277292.
Polak, L and Green, J (2016) Using joint interviews to add analytic value. Qualitative Health Research 26(12), 16381648.
Rhodes, RL et al. (2015) Barriers to end-of-life care for African Americans from the providers' perspective: Opportunity for intervention development. American Journal of Hospice & Palliative Care 32(2), 137143.
Ruggles, S (1994) The origins of African-American family structure. American Sociological Review 59(February), 136151.
Sanders, JJ, Robinson, MT and Block, SD (2016) Factors impacting advance care planning among African Americans: Results of a systematic integrated review. Journal of Palliative Medicine 19(2), 202227.
Smith, AK, Davis, RB and Krakauer, EL (2007) 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. Journal of General Internal Medicine 22(11), 15791582.
Smith, AK, Williams, BA and Lo, B (2011) Discussing overall prognosis with the very elderly. New England Journal of Medicine 365(23), 21492151.
Sobel, M (1979) Trabelin' on: The slave journey to an Afro-Baptist faith. Westport, CT: Greenwood Press.
Sudore, RL et al. (2017) Defining advance care planning for adults: A consensus definition from a multidisciplinary Delphi panel. Journal of Pain and Symptom Management 53(5), 821832.
Tay, K et al. (2017) Cultural influences upon advance care planning in a family-centric society. Palliative and Supportive Care 15(6), 665674.
Tucker, RT (1994). Patient Self-Determination Act: An African American perspective. Cambridge Quarterly of Healthcare Ethics 3(3), 417419.
Volandes, AE et al. (2007) Using video images of dementia in advance care planning. Archives of Internal Medicine 167(8), 828833.
Waters, CM (2001) Understanding and supporting African Americans' perspectives of end-of-life care planning and decision making. Qualitative Health Research 11(3), 385398.
Wenger, NS et al. (2001) End-of-life discussions and preferences among persons with HIV. JAMA 285(22), 28802887.
Williams, SW et al. (2008) Communication, decision making, and cancer: What African Americans want physicians to know. Journal of Palliative Medicine 11(9), 12211226.
Wright, AA et al. (2008) Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 300(14), 16651673.
Zapka, JG et al. (2006) Care at the end of life: Focus on communication and race. Journal of Aging and Health 18(6), 791813.
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Palliative & Supportive Care
  • ISSN: 1478-9515
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