Hostname: page-component-8448b6f56d-jr42d Total loading time: 0 Render date: 2024-04-18T04:13:37.547Z Has data issue: false hasContentIssue false
  • English
  • Français

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

Published online by Cambridge University Press:  05 June 2018

Justin J. Sanders Open the ORCID record for Justin J. Sanders [Opens in a new window] ,
Kimberly S. Johnson ,
Kimberly Cannady ,
Joanna Paladino ,
Dee W. Ford ,
Susan D. Block  and
Katherine R. Sterba
Justin J. Sanders*
Affiliation:
Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA
Kimberly S. Johnson
Affiliation:
Department of Medicine, Duke University School of Medicine, Durham, NC
Kimberly Cannady
Affiliation:
Department of Public Health Sciences, Medical University of South Carolina, Charleston, SC
Joanna Paladino
Affiliation:
Department of Medicine, Brigham and Women's Hospital, Boston, MA
Dee W. Ford
Affiliation:
Department of Medicine, Medical University of South Carolina, Charleston, SC
Susan D. Block
Affiliation:
Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA
Katherine R. Sterba
Affiliation:
Department of Public Health Sciences, Medical University of South Carolina, Charleston, SC
*
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
Get access Rights & Permissions [Opens in a new window]

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.

Keywords

Advance care planningAfrican Americanscommunicationserious illnessqualitative
Type
Original Article
Information
Palliative & Supportive Care , Volume 17 , Issue 3 , June 2019 , pp. 306 - 313
Copyright
Copyright © Cambridge University Press 2018 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Ahalt, C et al. (2012) “Knowing is better”: preferences of diverse older adults for discussing prognosis. Journal of General Internal Medicine 27(5), 568–575.10.1007/s11606-011-1933-0Google Scholar
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), 1109–1117.10.1001/jamainternmed.2013.903Google Scholar
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), 555–560.10.1200/JCO.2006.07.9046Google Scholar
Billings, JA and Bernacki, R. (2014) Strategic targeting of advance care planning interventions: the Goldilocks phenomenon. JAMA Internal Medicine 174(4), 620–624.10.1001/jamainternmed.2013.14384Google Scholar
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), 267–274.10.1007/s11606-007-0487-7Google Scholar
Bullock, K (2006) Promoting advance directives among African Americans: a faith-based model. Journal of Palliative Medicine 9(1), 183–195.10.1089/jpm.2006.9.183Google Scholar
Carr, D (2011) Racial differences in end-of-life planning: Why don't Blacks and Latinos prepare for the inevitable? Omega (Westport) 63(1), 1–20.10.2190/OM.63.1.aGoogle Scholar
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), 116–121.10.1177/1049909111410559Google Scholar
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), 1528–1533.10.1513/AnnalsATS.201504-253OCGoogle Scholar
Crabtree, BF and Miller, WL (1992) Doing qualitative research. Newbury Park, CA: Sage Publications.Google Scholar
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), 1457–1462.10.1016/S0027-9684(15)31547-9Google Scholar
Detering, KM et al. (2010) The impact of advance care planning on end of life care in elderly patients: Randomised controlled trial. BMJ 340, c1345.10.1136/bmj.c1345Google Scholar
Dupree, CY (2000) The attitudes of black Americans toward advance directives. Journal of Transcultural Nursing 11(1), 12–18.10.1177/104365960001100104Google Scholar
Ford, D et al. (2010) Factors associated with illness perception among critically ill patients and surrogates. Chest 138(1), 59–67.10.1378/chest.09-2124Google Scholar
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), 428–449.10.1177/0164027508316618Google Scholar
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), 493–501.10.1001/archinternmed.2008.616Google Scholar
Hauser, JM et al. (1997) Minority populations and advance directives: Insights from a focus group methodology. Cambridge Quarterly of Healthcare Ethics 6(1), 58–71.10.1017/S0963180100007611Google Scholar
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), 221–230.10.1017/S1478951503030396Google Scholar
Institute of Medicine (2015) Dying in America: Improving quality and honoring individual preferences near the end of life. Washington, DC: The National Academies Press.Google Scholar
Johnson, KS et al. (2008a) Racial differences in hospice revocation to pursue aggressive care. Archives of Internal Medicine 168(2), 218–224.10.1001/archinternmed.2007.36Google Scholar
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), 1953–1958.10.1111/j.1532-5415.2008.01919.xGoogle Scholar
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), 335–343; quiz 344.10.4037/ajcc2010161Google Scholar
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), 2993–3001.10.1001/jama.286.23.2993Google Scholar
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), 5559–5564.10.1200/JCO.2009.22.4733Google Scholar
Mack, JW et al. (2010a) Racial disparities in the outcomes of communication on medical care received near death. Archives of Internal Medicine 170(17), 1533–1540.10.1001/archinternmed.2010.322Google Scholar
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), 1203–1208.10.1200/JCO.2009.25.4672Google Scholar
McLeroy, KR et al. (1988) An ecological perspective on health promotion programs. Health Education Quarterly 15(4), 351–377.Google Scholar
Medvene, LJ et al. (2003) Promoting signing of advance directives in faith communities. Journal of General Internal Medicine 18(11), 914–920.10.1046/j.1525-1497.2003.20351.xGoogle Scholar
Morgan, DL et al. (2013) Introducing dyadic interviews as a method for collecting qualitative data. Qualitative Health Research 23(9), 1276–1284.10.1177/1049732313501889Google Scholar
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.Google Scholar
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), 277–292.10.1080/00981380801985432Google Scholar
Polak, L and Green, J (2016) Using joint interviews to add analytic value. Qualitative Health Research 26(12), 1638–1648.Google Scholar
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), 137–143.10.1177/1049909113507127Google Scholar
Ruggles, S (1994) The origins of African-American family structure. American Sociological Review 59(February), 136–151.10.2307/2096137Google Scholar
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), 202–227.10.1089/jpm.2015.0325Google Scholar
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), 1579–1582.Google Scholar
Smith, AK, Williams, BA and Lo, B (2011) Discussing overall prognosis with the very elderly. New England Journal of Medicine 365(23), 2149–2151.10.1056/NEJMp1109990Google Scholar
Sobel, M (1979) Trabelin' on: The slave journey to an Afro-Baptist faith. Westport, CT: Greenwood Press.Google Scholar
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), 821–832.10.1016/j.jpainsymman.2016.12.331Google Scholar
Tay, K et al. (2017) Cultural influences upon advance care planning in a family-centric society. Palliative and Supportive Care 15(6), 665–674.Google Scholar
Tucker, RT (1994). Patient Self-Determination Act: An African American perspective. Cambridge Quarterly of Healthcare Ethics 3(3), 417–419.Google Scholar
Volandes, AE et al. (2007) Using video images of dementia in advance care planning. Archives of Internal Medicine 167(8), 828–833.10.1001/archinte.167.8.828Google Scholar
Waters, CM (2001) Understanding and supporting African Americans' perspectives of end-of-life care planning and decision making. Qualitative Health Research 11(3), 385–398.Google Scholar
Wenger, NS et al. (2001) End-of-life discussions and preferences among persons with HIV. JAMA 285(22), 2880–2887.10.1001/jama.285.22.2880Google Scholar
Williams, SW et al. (2008) Communication, decision making, and cancer: What African Americans want physicians to know. Journal of Palliative Medicine 11(9), 1221–1226.10.1089/jpm.2008.0057Google Scholar
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), 1665–1673.10.1001/jama.300.14.1665Google Scholar
Zapka, JG et al. (2006) Care at the end of life: Focus on communication and race. Journal of Aging and Health 18(6), 791–813.10.1177/0898264306293614Google Scholar