Race-Stratified Randomized Trial Examining Advance Care Planning Engagement Among Older Adults

Abstract

Advance care planning (ACP), including creation of advance care directives (ACDs), is underutilized by Black American older adults. This study aimed to evaluate the effects of a culturally sensitive ACD (Five Wishes), versus a standard state directive, on ACP engagement and value congruence scores among Black and White Americans. A race-stratified sample of 189 participants was randomized into ACD conditions. Race and condition were not independent predictors of ACP and value congruence engagement. Physician trust predicted ACP engagement and value congruence differentially. Results indicate that the use of state directives negatively impacts trust among Black Americans, which negatively impacts ACP engagement. Primary limitations include metrics of ACP/ACD completion, sample size, and demographic distribution. Findings add to the growing body of literature implying that values-driven, person-centered directives may increase engagement and reduce the disparity in ACP between Black and White Americans, promoting better quality, equitable care at the end of life.

Keywords

end of life Five Wishes healthcare engagement value congruence

Get full access to this article

View all access options for this article.

References

AARP . (2015). Caregiving in the US.

Abedi

Olulana

Avula

Chaudhary

Khan

Shahjouei

Zand

(2021). Racial, economic, and health inequality and COVID-19 infection in the United States. Journal of Racial and Ethnic Health Disparaties, 8(3), 732–742. https://doi.org/10.1007/s40615-020-00833-4

Administration for Community Living . (2017). Profile of African Americans age 65 and over. https://acl.gov/sites/default/files/Aging_and_0Disability_in_America/2017OAProfileAfAm508.pdf

Aging with Dignity . (2020). Five wishes. Retrieved September 17 from. https://fivewishes.org/five-wishes/individuals-families/individuals-and-families

Alegria

Nakash

Johnson

K. S.

Ault-Brutus

Carson

Fillbrunn

Wang

Cheng

Harris

Polo

Lincoln

Freeman

Bostdorf

Rosenbaum

Epelbaum

LaRoche

Okpokwasili-Johnson

Carrasco

Shrout

P. E.

(2018). Effectiveness of the DECIDE interventions on shared decision making and perceived quality of care in behavioral health with multicultural patients. JAMA Psychiatry, 75(4), 325–335. https://doi.org/10.1001/jamapsychiatry.2017.4585

Anderson

L. A.

Dedrick

R. F.

(1990). Development of the trust in physician scale: A measure to assess interpersonal trust in patient-physician relationships. Psychological Reports, 67(3 Pt 2), 1091–1100. https://doi.org/10.2466/pr0.1990.67.3f.1091

Armstrong

Putt

Halbert

C. H.

Grande

Schwartz

Liao

Marcus

Demeter

M. B.

Shea

J. A.

(2013). Prior experiences of racial discrimination and racial differences in health care system distrust. Medical Care, 51(2), 144–150. https://doi.org/10.1097/MLR.0b013e31827310a1

Bazargan

Bazargan-Hejazi

(2021). Disparities in palliative and hospice care and completion of advance care planning and directives among non-Hispanic blacks: A scoping review of recent literature. American Journal of Hospice & Palliative Medicine, 38(6), 688–718. https://doi.org/10.1177/1049909120966585

Berinsky

A. J.

Huber

G. A.

Lenz

G. S.

(2017). Evaluating Online Labor Markets for Experimental Research. Amazon.com’s Mechanical Turk. Political Analysis, 20(3), 351–368. https://doi.org/10.1093/pan/mpr057

10.

Birkhauer

Gaab

Kossowsky

Hasler

Krummenacher

Werner

Gerger

(2017). Trust in the health care professional and health outcome: A meta-analysis. PLoS One, 12(2), e0170988. https://doi.org/10.1371/journal.pone.0170988

11.

Boag

Suresh

Celi

L. A.

Szolovits

Ghassemi

(2018, November). Racial disparities and mistrust in end-of-life care. In Machine learning for healthcare conference (pp. 587-602). PMLR.

12.

Buhrmester

Kwang

Gosling

S. D.

(2011). Amazon’s Mechanical Turk: A new source of inexpensive, yet high-quality, data? Perspectives on Psychological Science, 6(1), 3–5.

13.

Bullock

McGraw

S. A.

Blank

Bradley

E. H.

(2005). What matters to older African Americans facing end-of-life decisions? A focus group study. Journal of Social Work in End-Of-Life & Palliative Care, 1(3), 3–19. https://doi.org/10.1300/J457v01n03_02

14.

Callan

M. J.

Hyunji

Matthews

W. J.

(2016). The interrelations between social class, personal relative deprivation, and prosociality. Social Psychological and Personality Science, 8(6), 660–669. https://doi.org/10.1177/1948550616673877

15.

Caralis

P. V.

Davis

Wright

Marcial

(1993). The influence of ethnicity and race on attitudes toward advance directives, life-prolonging treatments, and euthanasia. Journal of Clinical Ethics, 4(2), 155–165.

16.

CaringInfo . (2005). Florida advance directive. National hospice and palliative care organization. Retrieved September 17 from. https://www.nhpco.org/wp-content/uploads/Florida.pdf

17.

Carr

(2011). Racial differences in end-of-life planning: Why don’t blacks and latinos prepare for the inevitable? OMEGA - Journal of Death and Dying, 63(1), 1–20. https://doi.org/10.2190/OM.63.1.a

18.

Carr

Khodyakov

(2007). End-of-life health care planing among young-old adults: An assessment of psychosocial influences. Journal of Gerontology: Social Sciences, 62B(2), S135–S141. https://doi.org/10.1093/geronb/62.2.s135

19.

Carr

Luth

(2016). End of life planning and health care. In George

L. K.

Ferraro

(Eds.), Handbook of aging and the social sciences (8th ed., pp. 375–394). Academic Press.

20.

Chen

Chu

Wang

Gao

Shen

(2025). Effects of communication, trust, and respect on shared decision-making: insights from healthcare providers in Chinese public hospitals. Front Med (Lausanne), 12, 1577276. https://doi.org/10.3389/fmed.2025.1577276

21.

DeNavas-Walt

Proctor

B. D.

(2014). Income and Poverty in the United States: 2013. U.S. Department of Commerce, U.S. Census Bureau. https://www2.census.gov/library/publications/2014/demographics/p60-249.pdf.

22.

Ender

A. M.

Uscinski

J. E.

Klofstad

Stoler

(2020). The different forms of COVID-19 misinformation and their consequences. The Harvard Kennedy School (HKS) Misinformation Review, 1(8). https://doi.org/10.37016/mr-2020-48

23.

Faul

Erdfelder

Buchner

Lang

A. G.

(2009). Statistical power analyses using g*Power 3.1: Tests for correlation and regression analyses. Behavior Research Methods, 41(4), 1149–1160. https://doi.org/10.3758/BRM.41.4.1149

24.

Gagnon

K. W.

Quinn

Walsh

J. L.

Amirkhanian

Y. A.

Kelly

J. A.

(2025). Characteristics of healthcare providers, healthcare systems, and patient strategies related to medical mistrust among Black and African Americans. BMC Primary Care, 26(1), 203. https://doi.org/10.1186/s12875-025-02900-3

25.

Gerst

Burr

J. A.

(2008). Planning for end-of-life care: Black-white differences in the completion of advance directives. Research on Aging, 30, 428–449.

26.

Haahr

(1998). RANDOM.ORG. https://www.random.org/company/

27.

Hopp

Duffy

S. A.

(2000). Racial variations in end of life care. Journal of American Geriatrics Society, 48(6), 658–663. https://doi.org/10.1111/j.1532-5415.2000.tb04724.x

28.

Howe

Kumar

Slattery

Milton

Tonkikh

Ogugu

E. G.

Bidwell

J. T.

Bell

Amadi

Agnoli

(2025). Advance care planning readiness, barriers, and facilitators among seriously ill Black older adults and their surrogates: A mixed methods study. Palliative Supportive Care, 23, Article e15. https://doi.org/10.1017/S1478951524001548

29.

Johnson

K. S.

Kuchibhatla

Tulsky

J. A.

(2008). What explains racial differences in the use of advance directives and attitudes toward hospice care? Racial differences in beliefs about end-of-life care. Journal of the American Geriatrics Society, 56(10), 1953–1958. https://doi.org/10.1111/j.1532-5415.2008.01919.x

30.

Johnson

S. S.

(2024). The urgent need to advance health equity: Past and present. American Journal of Health Promotion, 38(3), 427–447. https://doi.org/10.1177/08901171241232057

31.

Kagawa-Singer

Blackhall

L. J.

(2001). Negotiating cross-cultural issues at the end of life: You got to go where he lives. The Journal of American Medicine, 286(23), 2993–3001. https://doi.org/10.1001/jama.286.23.2993

32.

King

Hoppe

R. B.

(2013). “Best practice” for patient-centered communication: A narrative review. Journal of Graduate Medical Education, 5(3), 385–393. https://doi.org/10.4300/JGME-D-13-00072.1

33.

Klingler

der Schmitten

Marckmann

(2016). Does facilitated advance care planning reduce the costs of care near the end of life? Systematic review and ethical considerations. Palliative Medicine, 30(5), 423–433. https://doi.org/10.1177/0269216315601346

34.

Krakauer

E. L.

Crenner

Fox

(2002). Barriers to optimum end of life care for mintority patients. Journal of the American Geriatrics Society, 50(1), 182–190. https://doi.org/10.1046/j.1532-5415.2002.50027.x

35.

Kramer

B. J.

Boelk

A. Z.

Auer

(2006). Family conflict at the end of life: Lessons learned in a model program for vulnerable older adults. Journal of Palliative Medicine, 9(3), 791–801. https://doi.org/10.1089/jpm.2006.9.791

36.

Krot

Rudawska

(2016). The Role of Trust in Doctor-Patient Relationship: Qualitative Evaluation of Online Feedback from Polish Patients. Economics & Sociology, 9(3), 76–88. https://doi.org/10.14254/2071-789x.2016/9-3/7

37.

Liu Liping

Jiang

(2019). Patient-centered communication mediated the relationship between health information acquisition and patient trust in physicians: A five-year comparison in China. Health Communication, 36(2), 207–216. https://doi.org/10.1080/10410236.2019.1673948

38.

Mack

J. W.

Paulk

M. E.

Viswanath

Prigerson

H. G.

(2010). Racial disparities in the outcomes of communication on medical care received near death. Archives of Internal Medicine, 170(17), 1533–1540. https://doi.org/10.1001/archinternmed.2010.322

39.

Mansfield

C. J.

Mitchell

King

D. E.

(2002). The doctor as god's mechanic? Beliefs in the southeastern United States. Social Science Medicine, 54(3), 399–409. https://doi.org/10.1016/s0277-9536(01)00038-7

40.

Marreiros

Tonin

Vlassopoulos

Schraefel

M. C.

(2017). Now that you mention it: A survey experiment on information, inattention, and online privacy. Journal of Economics and Behavioral Organization, 140(1), 1. https://doi.org/10.1016/j.jebo.2017.03.024

41.

Mundy

L. M.

Judd

S. E.

Clay

O. J.

Howard

V. J.

Durant

R. W.

Ballard

E. E.

Crowe

(2025). Correlates of Patient Trust in Doctors: Demographic Factors and Experiences of Medical Care Discrimination. J Gen Intern Med, 40(16), 4015–4021. https://doi.org/10.1007/s11606-025-09474-x

42.

National Institute on Aging . (2022 10/31/2022). Advance care planning: Advance directives for health care. Retrieved July 14, 2025 from. https://www.nia.nih.gov/health/advance-care-planning/advance-care-planning-advance-directives-health-care

43.

Netemeyer

R. G.

Dobolyi

D. G.

Abbasi

Clifford

Taylor

(2019). Health literacy, health numeracy, and trust in doctor: Effects on key patient health outcomes. Journal of Consumer Affairs, 54(1), 3–42. https://doi.org/10.1111/joca.12267

44.

Ozawa

Sripad

(2013). How do you measure trust in the health system? A systematic review of the literature. Social Science & Medicine, 91, 10–14. https://doi.org/10.1016/j.socscimed.2013.05.005

45.

Paolacci

Chandler

Ipeirotis

P. G.

(2023). Running experiments on Amazon Mechanical Turk. Judgment and Decision Making, 5(5), 411–419. https://doi.org/10.1017/s1930297500002205

46.

Peer

Samat

Brandimarte

Acquisti

(2017). Beyond the turk: Alternative platforms for crowdsourcing behavioral research. Journal of Experimental Social Psychology, 70, 153–163. https://doi.org/10.1016/j.jesp.2017.01.006

47.

Racial and ethnic composition . (2017). Pew Research Center. Retrieved December 19 from.

48.

Russert

(2009). A study in nature: The Tuskegee experiments and the new south plantation. Journal of Medical Humanities, 30(3), 155–171.

49.

Sewell

(2015). Disaggregating ethnoracial disparities in physician trust. Social Science Research, 54, 1–20. https://doi.org/10.1016/j.ssresearch.2015.06.020

50.

Shi

Barnes

D. E.

Boscardin

You

J. J.

Heyland

D. K.

Volow

A. M.

Howard

Sudore

R. L.

(2019). Brief English and Spanish survey detects change in response to advance care planning interventions. Journal of Pain and Symptom Management, 58(6), 1068–1074.e5. https://doi.org/10.1016/j.jpainsymman.2019.09.004

51.

Song

M. K.

Hanson

L. C.

(2009). Relationships between psychosocial spiritual well-being and end-of-life preferenes and values in African American dialysis patients. Journal of Pain and Symptom Management, 38(3), 372–380. https://doi.org/10.1016/j.jpainsymman.2008.11.007

52.

Souvatzi

Katsikidou

Arvaniti

Plakias

Tsiakiri

Samakouri

(2024). Trust in healthcare, medical mistrust, and health outcomes in times of health crisis: A narrative review. Societies, 14(12), 269. https://doi.org/10.3390/soc14120269

53.

Sudore

R. L.

Heyland

D. K.

Barnes

D. E.

Howard

Fassbender

Robinson

C. A.

Boscardin

You

J. J.

(2017a). Measuring advance care planning: Optimizing the advance care planning engagement survey. J Pain Symptom Manage, 53(4), 669–681 e668. https://doi.org/10.1016/j.jpainsymman.2016.10.367

54.

Sudore

R. L.

Knight

Stewart

McMahan

Barnes

Fuez

(2014). Development and validation of a questionnaire to detect behavior change in multiple advance care planning behaviors. Journal of Pain and Symptom Management, 47(2), 459–460. https://doi.org/10.1016/j.jpainsymman.2013.12.217

55.

Sudore

R. L.

Lum

H. D.

You

J. J.

Hanson

L. C.

Meier

D. E.

Pantilat

S. Z.

Matlock

D. D.

Rietjens

J. A. C.

Korfage

I. J.

Ritchie

C. S.

Kutner

J. S.

Heyland

D. K.

Thomas

McMahan

R. D.

(2017b). Defining advance care planning for adults: A consensus definition from a multidisciplinary Delphi panel. Journal of Pain and Symptom Management, 53(5), 821–832. https://doi.org/10.1016/j.jpainsymman.2016.12.331

56.

Sudore

R. L.

Stewart

A. L.

Knight

S. J.

McMahan

R. D.

Feuz

Miao

Barnes

D. E.

(2013). Development and validation of a questionnaire to detect behavior change in multiple advance care planning behaviors. PLoS One, 8(9), Article e72465. https://doi.org/10.1371/journal.pone.0072465

57.

Thom

D. H.

Hall

M. A.

Pawlson

L. G.

(2004). Measuring patients’ trust in physicians when assessing quality of care. Health affairs (Project. Hope), 23(4), 124–132.

58.

Torke

A. M.

Garas

N. S.

Sexson

Branch

W. T.

(2005). Medical care at the end of life: Views of African American patients in an urban hospital. Journal of Palliative Medicine, 8(3), 593–602. https://doi.org/10.1089/jpm.2005.8.593

59.

Turner

A. M.

Engelsma

Taylor

J. O.

Sharma

R. K.

Demiris

(2020). Recruiting older adult participants through crowdsourcing platforms: Mechanical turk versus prolific academic. In AMIA annual symposium proceedings archive (pp. 1230–1238). AMIA Symposium.

60.

Wilk

A. S.

Platt

J. E.

(2016). Measuring physicians’ trust: A scoping review with implications for public policy. Soc Sci Med, 165, 75–81. https://doi.org/10.1016/j.socscimed.2016.07.039

61.

Jin

Wang

(2022). The Relationship Between the Physician-Patient Relationship, Physician Empathy, and Patient Trust. J Gen Intern Med, 37(6), 1388–1393. https://doi.org/10.1007/s11606-021-07008-9

62.

Wunsch

Guerra

Barnato

A. E.

Angus

D. C.

Guoha

LindeZwirble

W. T.

(2010). Three-year outcomes for medicare beneficiaries who survive intensive care. JAMA, 303(9), 849–856. https://doi.org/10.1001/jama.2010.216

63.

Zwingmann

Baile

W. F.

Schmier

J. W.

Bernhard

Keller

(2017). Effects of patient-centered communication on anxiety, negative affect, and trust in physician in delivering a cancer diagnosis: A randomized, experimental study. Cancer, 123(16), 3167–3175. https://doi.org/10.1002/cncr.30694