Abstract
In this article, we demonstrate first how the term “aggressive care,” used loosely by clinicians to denote care that can negatively impact quality of life in serious illness, is often used to inappropriately label the preferences of African American patients, and discounts, discredits, and dismisses the deeply held beliefs of African American Christians. This form of biased communication results in a higher proportion of African Americans than whites receiving care that is non-goal-concordant and contributes to the prevailing lack of trust the African American community has in our healthcare system. Second, we invite clinicians and health care centers to make the perspectives of socially marginalized groups (in this case, African American Christians) the central axis around which we find solutions to this problem. Based on this, we provide insight and understanding to clinicians caring for seriously ill African American Christian patients by sharing their beliefs, origins, and substantive importance to the African American Christian community. Third, we provide recommendations to clinicians and healthcare systems that will result in African Americans, regardless of religious affiliation, receiving equitable levels of goal-concordant care if implemented.
Key Message
Labeling care at end-of-life as “aggressive” discounts the deeply held beliefs of African American Christians. By focusing on the perspectives of this group clinicians will understand the importance of respecting their religious values. The focus on providing equitable goal-concordant care is the goal.
Similar content being viewed by others
References
Lusignani M, Giannì ML, Re LG, Buffon ML. Moral distress among nurses in medical surgical and intensive-care units. J Nurs Manag. 2017;25(6):477–85.
Peter E, Mohammed S, Simmonds A. Narratives of aggressive care knowledge time, and responsibility. Nurs Ethics. 2014;214:461–72.
Cain CL, Surbone A, Elk R. Kagawa-Singer M Culture and palliative care preferences communication meaning and mutual decision making. J Pain Symptom Manage. 2018;55(5):1408–19.
Balboni TA, Balboni M, Enzinger AC, et al. Provision of spiritual support to patients with advanced cancer by religious communities and associations with medical care at the end of life. JAMA Intern Med. 2013;173(12):1109–17.
Elk R, Emanuel L, Hauser J, Bakitas M, Levkoff S. Developing and testing the feasibility of a culturally based tele-palliative care consult based on the cultural values and preferences of southern, Rural African American and White community members: a program by and for the community. Health Equity. 2020;4(1):52–83.
Miccinesi G, Caraceni A, Garetto F, et al. The path of Cicely Saunders The “peculiar beauty” of palliative care. J Palliat Care. 2020;35(1):3–7. https://doi.org/10.1177/0825859719833659.
Ford CL, Airhihenbuwa CO. 2010 Critical race theory, race equity, and public health: toward antiracism praxis. Am J Public Health. 100;Suppl 1(Suppl 1):S30–35.
Rogers KD, Ernst R, Shulman I, Reisinger KS. Effectiveness of aggressive follow-up on Navajo infant health and medical care use. Pediatrics. 1974;53(5):721–5.
Sperling DR, Verska JJ. Rubella syndrome—cardiovascular manifestations and surgical therapy in infants. Calif Med. 1966;105(5):340.
Berlowitz DR, Ash AS, Hickey EC, Glickman M, Friedman R, Kader B. Hypertension management in patients with diabetes: the need for more aggressive therapy. Diabetes Care. 2003;26(2):355–9.
Giugliano RP, Camargo CA, Lloyd-Jones DM, et al. Elderly patients receive less aggressive medical and invasive management of unstable angina: potential impact of practice guidelines. Arch Intern Med. 1998;158(10):1113–20.
Whitmore RG, Thawani JP, Grady MS, Levine JM, Sanborn MR, Stein SC. Is aggressive treatment of traumatic brain injury cost-effective? J Neurosurg. 2012;116(5):1106–13.
Falchook AD, Dusetzina SB, Tian F, Basak R, Selvam N, Chen RC. Aggressive end-of-life care for metastatic cancer patients younger than age 65 years. JNCI. 2017;109:9.
Bylicki O, Didier M, Riviere F, Margery J, Grassin F, Chouaid C. Lung cancer and end-of-life care: a systematic review and thematic synthesis of aggressive inpatient care. BMJ Support Palliat Care. 2019;9(4):413–24. https://doi.org/10.1136/bmjspcare-2019-001770.
Earle CC, Neville BA, Landrum MB, Souza JM, Weeks JC, Block SD, Grunfeld E, Ayanian JZ. Evaluating claims-based indicators of the intensity of end-of-life cancer care. Int J Qual Health Care. 2005;17(6):505–9. https://doi.org/10.1093/intqhc/mzi061.
Institute of Medicine (US) Committee on Quality of Health Care in America. Crossing the quality chasm: a new health system for the 21st century. Washington (DC): National Academies Press (US); 2001. PMID: 25057539.
Cutler DM. What is the US health spending problem? Health Aff. 2018;37(3):493–7.
Grudzen CR, Richardson LD, Major-Monfried H, Kandarian B, Ortiz JM, Morrison RS. Hospital administrators’ views on barriers and opportunities to delivering palliative care in the emergency department. Ann Emerg Med. 2013;61(6):654–60. https://doi.org/10.1016/j.annemergmed.2012.06.008.
Morrison RS. Better care, better bottom line for hospitals. Medscape J Med. 2008;10(12):274.
Gazaway S, Stewart M, Schumacher A. Integrating palliative care into the chronic illness continuum: a conceptual model for minority populations. J Racial Ethn Health Disparities. 2019;6(6):1078–86.
Mor V, Wagner TH, Levy C, et al. Association of expanded VA hospice care with aggressive care and cost for veterans with advanced lung cancer. JAMA Oncol. 2019;5(6):810–6.
Krikorian A, Maldonado C, Pastrana T. Patient’s perspectives on the notion of a good death: A systematic review of the literature. J Pain Symptom Manage. 2020;59(1):152–64. https://doi.org/10.1016/j.jpainsymman.2019.07.033.
Marcewicz L, Kunihiro SK, Curseen KA, Johnson K, Kavalieratos D. Application of critical race theory in palliative care research: a scoping review. J Pain Symptom Manage. 2022;63(6):e667–84. https://doi.org/10.1016/j.jpainsymman.2022.02.018.
Gillon R. Ordinary and extraordinary means. BJM (Clinical research ed). 1986;292(6515):259.
Johnson KS, Kuchibhatla M, Tulsky JA. What explains racial differences in the use of advance directives and attitudes toward hospice care? J Am Geriatr Soc. 2008;56(10):1953–8.
Barnato AE, Anthony DL, Skinner J, Gallagher PM, Fisher ES. Racial and ethnic differences in preferences for end-of-life treatment. J Gen Intern Med. 2009;24(6):695–701.
Bazargan M, Cobb S, Assari S. End-of-Life wishes among non-Hispanic Black and White middle-aged and older adults. J Racial Ethn Health Disparities. 2021;8(5):1168–77.
McKinley ED, Garrett JM, Evans AT, Danis M. Differences in end-of-life decision making among black and white ambulatory cancer patients. J Gen Intern Med. 1996;11(11):651–6.
Blackhall LJ, Frank G, Murphy ST, Michel V, Palmer JM, Azen SP. Ethnicity and attitudes towards life sustaining technology. Soc Sci Med. 1999;48(12):1779–89.
Dixon J, Karagiannidou M, Knapp M. The effectiveness of advance care planning in improving end-of-life outcomes for people with dementia and their carers: a systematic review and critical discussion. J Pain Symptom Manage. 2018;55(1):132–150. e131.
Rhodes RL, Batchelor K, Lee SC, Halm EA. Barriers to end-of-life care for African Americans from the providers’ perspective: opportunity for intervention development. Am J Hosp Palliat Care. 2015;32(2):137–43. https://doi.org/10.1177/1049909113507127.
Sanders JJ, Johnson KS, Cannady K, Paladino J, Ford DW, Block SD, Sterba KR. From barriers to assets: Rethinking factors impacting advance care planning for African Americans. Palliat Support Care. 2019;17(3):306–13. https://doi.org/10.1017/S147895151800038X.
Sanders JJ, Curtis JR, Tulsky JA. Achieving goal-concordant care: a conceptual model and approach to measuring serious illness communication and its impact. J Palliat Med. 2018;21(S2):S-17-S-27.
Lin JJ, Smith CB, Feder S, Bickell NA, Schulman-Green D. Patients’ and oncologists’ views on family involvement in goals of care conversations. Psycho-Oncol. 2018;27(3):1035–41.
Noah BA. The role of race in end-of-life care. J Health Care L & Pol’y. 2012;15:349.
Mack JW, Paulk ME, Viswanath K, Prigerson HG. Racial disparities in the outcomes of communication on medical care received near death. Arch Intern Med. 2010;170(17):1533–40.
Chuang E, Hope AA, Allyn K, Szalkiewicz E, Gary B, Gong MN. Gaps in provision of primary and specialty palliative care in the acute care setting by race and ethnicity. J Pain Symptom Manage. 2017;54(5):645–653. e641.
Gonzalez CM, Lypson ML, Sukhera J. Twelve tips for teaching implicit bias recognition and management. Med Teach. 2021;1–11.
Mack JW, Weeks JC, Wright AA, Block SD, Prigerson HG. End-of-life discussions, goal attainment, and distress at the end of life: predictors and outcomes of receipt of care consistent with preferences. J Clin Oncol. 2010;28(7):1203.
Loggers ET, Maciejewski PK, Paulk E, et al. Racial differences in predictors of intensive end-of-life care in patients with advanced cancer. J Clin Oncol. 2009;27(33):5559.
Johnson KS. Racial and ethnic disparities in palliative care. J Palliat Med. 2013;16(11):1329–34.
Ernecoff NC, Wessell KL, Bennett AV, Hanson LC. Measuring goal-concordant care in palliative care research. J Pain Symptom Manage. 2021;62(3):e305-e314. https://doi.org/10.1016/j.jpainsymman.2021.02.030. Epub 2021 Mar 3. PMID: 33675919; PMCID: PMC9082654.
Racism. In. Merriam Webster Dictinary. 2021.
Faith Among Black Americans. Washington, D.C. : Pew Research Center. 2021. https://www.pewforum.org/2021/02/16/religious-affiliation-and-congregations/
U.S. Religious Landscape Survey: Religious Beliefs and Practices. Washington, D.C. : Pew Research Center. 2008.
Jaiswal J, Halkitis PN. Towards a more inclusive and dynamic understanding of medical mistrust informed by science. J Behav Med. 2019;45(2):79–85.
Johnson KS, Elbert-Avila KI, Tulsky JA. The influence of spiritual beliefs and practices on the treatment preferences of African Americans: a review of the literature. J Am Geriatr Soc. 2005;53(4):711–9.
Wicher CP, Meeker MA. What influences African American end-of-life preferences? J Health Care Poor Underserved. 2012;23(1):28–58.
Gates JHL, McGee D, Holman S, Bryson C, Harris S. The Black church: this is our story, this is our song. In. Washington, DC: PBS. 2021.
Babatunde OA, Eberth JM, Felder T, et al. Social determinants of racial disparities in breast cancer mortality among black and white women. J Racial Ethn Health Disparities. 2021;8(1):147–56.
Nicholas SB, Kalantar-Zadeh K, Norris KC. Racial disparities in kidney disease outcomes. Paper presented at: Seminars in nephrology. 2013.
Wells L, Gowda A. A legacy of mistrust: African Americans and the US healthcare system. Proceedings of UCLA Health. 2020;24.
Boyd-Franklin N. Incorporating spirituality and religion into the treatment of African American clients. Couns Psychol. 2010;38(7):976–1000.
Figueroa LR, Davis B, Baker S, Bunch JB. The influence of spirituality on health care-seeking behaviors among African Americans. Abnf j. 2006;17(2):82–8.
Holt CL, Wang MQ, Clark EM, Williams BR, Schulz E. Religious involvement and physical and emotional functioning among African Americans: the mediating role of religious support. Psychol Health. 2013;28(3):267–83.
Reese DJ, Ahern RE, Nair S, O’Faire JD, Warren C. Hospice access and use by African Americans: addressing cultural and institutional barriers through participatory action research. Soc Work. 1999;44(6):549–59.
Kennard CL. Undying hope J Palliat Med. 2016;19(2):129–30.
Lewis LM. Spiritual assessment in African-Americans: a review of measures of spirituality used in health research. J Relig Health. 2008;47(4):458–75.
Kagawa-Singer M, Dadia AV, Yu MC. Surbone A Cancer culture and health disparities time to chart a new course? CA Cancer J Clin. 2010;60(1):12–39.
Elk R. The first step is recognizing, acknowledging, and respecting the inequity, disrespect, and disregard our African American patients have experienced. J Palliat Med. 2016;19(2):124–5.
Zeidan A, Tiballi A, Woodward M. Di Bartolo IM Targeting implicit bias in medicine lessons from art and archaeology. West J Emerg Med. 2022;21(1):1.
Cowling WR III, Smith MC, Watson J. The power of wholeness, consciousness, and caring a dialogue on nursing science, art, and healing. ANS Adv Nurs Sci. 2008;31(1):E41–51.
Ingersoll LT, Alexander SC, Priest J, et al. Racial/ethnic differences in prognosis communication during initial inpatient palliative care consultations among people with advanced cancer. Patient Educ Couns. 2019;102(6):1098–103.
Waters CM. Understanding and supporting African Americans’ perspectives of end-of-life care planning and decision making. Qual Health Res. 2001;11(3):385–98.
Thompkins JD. Thompkins’ response to Morrison: advance directives/care planning: Clear, simple, and wrong. J Palliat Med. 2021;1-7. https://doi.org/10.1089/jpm.2020.0272; https://doi.org/10.1089/jpm.2020.0488. Accessed 24 Jan 2021.
Brinkman-Stoppelenburg A, Rietjens JA, van der Heide A. The effects of advance care planning on end-of-life care a systematic review. Palliat Med. 2014;28(8):1000–25. https://doi.org/10.1177/0269216314526272.
Elk R, Gazaway S. Engaging social justice methods to create palliative care programs that reflect the cultural values of African American patients with serious illness and their families: a path towards health equity. J Law Med Ethics. 2021;49(2):222–30. https://doi.org/10.1017/jme.2021.32.
Spencer J, Gilmore B, Lodenstein E, Portela A. A mapping and synthesis of tools for stakeholder and community engagement in quality improvement initiatives for reproductive, maternal, newborn, child and adolescent health. Health Expect. 2021;24(3):744–56. https://doi.org/10.1111/hex.13237.
Funding
Dr. Gazaway receives funding from an unnumbered Dean Scholar Award supported by the University of Alabama at Birmingham School and Nursing and the Dr. Chuang receives funding from the National Institute of Minority Health and Health Disparities (K23MD015277). The authors declare that funders had no role in the development, review, or revision of this manuscript.
Author information
Authors and Affiliations
Contributions
All authors contributed to the conception, design, editing, and framing of this article. The first draft was written collectively, and all reviews, edits, and comments were done by group. All authors read and approved of the final manuscript.
Corresponding author
Ethics declarations
Conflict of Interest
The authors declare no competing interests.
Data Availability
Not applicable.
Code Availability
Not applicable.
Ethics Approval
Not applicable.
Consent to Participate
Not applicable.
Consent for Publication
Not applicable.
Additional information
Publisher's Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Rights and permissions
Springer Nature or its licensor holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.
About this article
Cite this article
Gazaway, S., Chuang, E., Thompson, M. et al. Respecting Faith, Hope, and Miracles in African American Christian Patients at End-of-Life: Moving from Labeling Goals of Care as “Aggressive” to Providing Equitable Goal-Concordant Care. J. Racial and Ethnic Health Disparities 10, 2054–2060 (2023). https://doi.org/10.1007/s40615-022-01385-5
Received:
Revised:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s40615-022-01385-5