Racial Disparities in Health Beliefs and Advance Care Planning Among Patients Receiving Maintenance Dialysis



      Among people receiving maintenance dialysis, little is known about racial disparities in the occurrence of prognostic discussions, beliefs about future health, and completion of advance care planning (ACP) documents.


      We examined whether Black patients receiving maintenance dialysis differ from White patients in prognostic discussions, beliefs about future health, and completion of ACP-related documents.


      We surveyed adult patients receiving maintenance dialysis from seven dialysis units in Cleveland, Ohio, and hospitalized patients at a tertiary care hospital in Cleveland. Of the 450 patients who were asked to participate in the study, 423 (94%) agreed. We restricted the current secondary analyses to include only Black (n=285) and White (n=114) patients. The survey assessed patients’ knowledge of their kidney disease, attitudes toward chronic kidney disease (CKD) treatment, preferences for end-of-life (EoL) care, the patient-reported occurrence of prognostic discussions, experiences with kidney therapy decision making, sentiments of dialysis regret, beliefs about health over the next 12 months, and advance care planning. We used stepwise logistic regression to determine if race was associated with the occurrence of prognostic discussions, beliefs about future health, and completion of an ACP-related document, while controlling for potential confounders.


      We found no significant difference in the frequency of prognostic discussions between Black (11.9%) versus White patients (7%) (P=0.15). However, Black patients (19%) had lower odds of believing that their health would worsen over the next 12 months (OR 0.22, CI 0.12, 0.44) and reporting completion of any ACP-related document (OR 0.5, CI 0.32, 0.81) compared to White patients


      Racial differences exist in beliefs about future health and completion of ACP-related documents. Systemic efforts to investigate differences in health beliefs and address racial disparities in the completion of ACP-related documents are needed.

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        • United States Renal Data System
        2018 USRDS annual data report: Epidemiology of kidney disease in the United States.
        National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD2018
      1. United States Renal Data System Chapter 12: End -of-life care for patients with End Stage Renal Disease, 2000-2014. 2017.

        • McMahan RD
        • Tellez I
        • Sudore RL.
        Deconstructing the complexities of advance care planning outcomes: what do we know and where do we go? A scoping review.
        J Am Geriatr Soc. 2020;
        • Davison SN.
        End-of-life care preferences and needs: perceptions of patients with chronic kidney disease.
        Clin J Am Soc Nephrol. 2010; 5: 195-204
        • Saeed F
        • Sardar MA
        • Davison SN
        • Murad H
        • Duberstein PR
        • Quill TE.
        Patients' perspectives on dialysis decision-making and end-of-life care.
        Clin Nephrol. 2019; 91: 294-300
        • Wachterman MW
        • Marcantonio ER
        • Davis RB
        • et al.
        Relationship between the prognostic expectations of seriously ill patients undergoing hemodialysis and their nephrologists.
        JAMA Intern Med. 2013; 173: 1206-1214
        • O'Hare AM
        • Kurella Tamura M
        • Lavallee DC
        • et al.
        Assessment of self-reported prognostic expectations of people undergoing dialysis: United States renal data system study of treatment preferences (USTATE).
        JAMA Intern Med. 2019;
        • Temel JS
        • Greer JA
        • Admane S
        • et al.
        Longitudinal perceptions of prognosis and goals of therapy in patients with metastatic non-small-cell lung cancer: results of a randomized study of early palliative care.
        J Clin Oncol. 2011; 29: 2319-2326
        • Institute of Medicine
        Dying in America: improving quality and honoring individual preferences near end-of-life.
        The National Academies Press, 2014
        • Moss AH.
        Revised dialysis clinical practice guideline promotes more informed decision-making.
        Clin J Am Soc Nephrol. 2010; 5: 2380-2383
        • Xue JL
        • Eggers PW
        • Agodoa LY
        • Foley RN
        • Collins AJ.
        Longitudinal study of racial and ethnic differences in developing end-stage renal disease among aged medicare beneficiaries.
        J Am Soc Nephrol. 2007; 18: 1299-1306
      2. Centers for Disease Control and Prevention. Chronic kidney disease surveillance system website. Accessed June 24, 2019.

        • Barnato AE
        • Chang CH
        • Lave JR
        • Angus DC.
        The paradox of end-of-life hospital treatment intensity among Black patients: a retrospective cohort study.
        J Palliat Med. 2018; 21 (01): 69-77
        • Cohen LL.
        Racial/ethnic disparities in hospice care: a systematic review.
        J Palliat Med. 2008; 11: 763-768
        • Orlovic M
        • Smith K
        • Mossialos E.
        Racial and ethnic differences in end-of-life care in the United States: evidence from the health and retirement study (HRS).
        SSM Popul Health. 2019; 7100331
        • Foley RN
        • Sexton DJ
        • Drawz P
        • Ishani A
        • Reule S.
        Race, ethnicity, and end-of-life care in dialysis patients in the United States.
        J Am Soc Nephrol. 2018; 29: 2387-2399
        • Bailey ZD
        • Krieger N
        • Agénor M
        • et al.
        Structural racism and health inequities in the USA: evidence and interventions.
        Lancet. 2017; 389 (04 08): 1453-1463
        • Laury ER
        • MacKenzie-Greenle M
        • Meghani S.
        Advance care planning outcomes in African Americans: an empirical look at the trust variable.
        J Palliat Med. 2019; 22: 442-451
        • Ashana DC
        • D'Arcangelo N
        • Gazarian PK
        • et al.
        Don't talk to them about goals of care": understanding disparities in advance care planning.
        J Gerontol A Biol Sci Med Sci. 2021;
        • Eneanya ND
        • Boulware LE
        • Tsai J
        • et al.
        Health inequities and the inappropriate use of race in nephrology.
        Nat Rev Nephrol. 2022; 18: 84-94
        • Eggly S
        • Hamel LM
        • Penner LA
        • Albrecht TL
        Health disparities.
        in: Wittenberg - Lyles E Goldsmith J Ferrell B Ragan S Glaichen M Smith T Textbook of palliative care communication. Oxford University Press, Oxford, UK2015: 111-118
        • Cooper LA
        • Roter DL
        • Johnson RL
        • et al.
        Patient-centered communication, ratings of care, and concordance of patient and physician race.
        Ann Intern Med. 2003; 139: 907-915
        • Eggly S
        • Harper FW
        • Penner LA
        • et al.
        Variation in question asking during cancer clinical interactions: a potential source of disparities in access to information.
        Patient Educ Couns. 2011; 82: 63-68
        • Johnson RL
        • Roter D
        • Powe NR
        • Cooper LA.
        Patient race/ethnicity and quality of patient-physician communication during medical visits.
        Am J Public Health. 2004; 94 (Not in File): 2084-2090
        • Siminoff LA
        • Graham GC
        • Gordon NH.
        Cancer communication patterns and the influence of patient characteristics: disparities in information-giving and affective behaviors.
        Patient Educ Couns. 2006; 62: 355-360
        • Carr D.
        Racial differences in end-of-life planning: why don't Blacks and Latinos prepare for the inevitable?.
        Omega (Westport). 2011; 63: 1-20
        • Carr D.
        Racial and ethnic differences in advance care planning: identifying subgroup patterns and obstacles.
        J Aging Health. 2012; 24: 923-947
        • Huskamp HA
        • Keating NL
        • Malin JL
        • et al.
        Discussions with physicians about hospice among patients with metastatic lung cancer.
        Arch Intern Med. 2009; 169: 954-962
        • Rubin D.B.
        Multiple imputation for nonresponse in surveys  (Vol. 81).
        John Wiley & Sons, 2004
        • Kucirka LM
        • Grams ME
        • Lessler J
        • et al.
        Association of race and age with survival among patients undergoing dialysis.
        JAMA. 2011; 306: 620-626
        • Wesselman H
        • Ford CG
        • Leyva Y
        • et al.
        Social determinants of health and race disparities in kidney transplant.
        Clin J Am Soc Nephrol. 2021; 16: 262-274
        • Agunbiade A
        • Dasgupta A
        • Ward MM.
        Racial/ethnic differences in dialysis discontinuation and survival after hospitalization for serious conditions among patients on maintenance dialysis.
        J Am Soc Nephrol. 2020; 31: 149-160
        • Unruh M
        • Miskulin D
        • Yan G
        • et al.
        Racial differences in health-related quality of life among hemodialysis patients.
        Kidney Int. 2004; 65: 1482-1491
        • Eneanya ND
        • Tiako MJN
        • Novick TK
        • Norton JM
        • Cervantes L.
        Disparities in mental health and well-being among black and latinx patients with kidney disease.
        Semin Nephrol. 2021; 41: 563-573
        • McDermott E
        • Selman LE.
        Cultural factors influencing advance care planning in progressive, incurable disease: a systematic review with narrative synthesis.
        J Pain Symptom Manage. 2018; 56: 613-636
        • Bazargan M
        • Bazargan-Hejazi S.
        Disparities in palliative and hospice care and completion of advance care planning and directives among Non-Hispanic Blacks: a Scoping Review of Recent Literature.
        Am J Hosp Palliat Care. 2021; 38: 688-718
        • Ralf Schwarzer
        Optimism, vulnerability, and self-beliefs as health-related cognitions: a systematic overview.
        Psychology & Health. 1994; 9: 161-180
        • Kurella Tamura M
        • Goldstein MK
        • Pérez-Stable EJ
        Preferences for dialysis withdrawal and engagement in advance care planning within a diverse sample of dialysis patients.
        Nephrol Dial Transplant. 2010; 25: 237-242
        • Collins JW
        • Zoucha R
        • Lockhart JS
        • Mixer SJ.
        Cultural aspects of end-of-life advance care planning for African Americans: An ethnonursing study.
        J Transcult Nurs. 2020; 1043659620960788
        • Eneanya ND
        • Wenger JB
        • Waite K
        • et al.
        Racial disparities in end-of-life communication and preferences among chronic kidney disease patients.
        Am J Nephrol. 2016; 44: 46-53
        • Sudore RL
        • Lum HD
        • You JJ
        • et al.
        Defining advance care planning for adults: a consensus definition from a multidisciplinary Delphi panel.
        J Pain Symptom Manage. 2017; 53: 821-832.e1
        • Laidsaar-Powell R
        • Butow P
        • Boyle F
        • Juraskova I.
        Managing challenging interactions with family caregivers in the cancer setting: Guidelines for clinicians (TRIO Guidelines-2).
        Patient Educ Couns. 2018; 101: 983-994
        • Kim-Godwin YS
        • Clarke PN
        • Barton L.
        A model for the delivery of culturally competent community care.
        J Adv Nurs. 2001; 35: 918-925
        • Quill TE
        • Abernethy AP.
        Generalist plus specialist palliative care–creating a more sustainable model.
        N Engl J Med. 2013; 368: 1173-1175
        • Lorenz KA
        • Lynn J
        • Dy SM
        • et al.
        Evidence for improving palliative care at the end of life: a systematic review.
        Ann Intern Med. 2008; 148: 147-159
        • Holley JL
        • Davison SN.
        Advance care planning in CKD: clinical and research opportunities.
        Am J Kidney Dis. 2014; 63: 739-740
        • Holley JL
        • Hines SC
        • Glover JJ
        • et al.
        Failure of advance care planning to elicit patients' preferences for withdrawal from dialysis.
        Am J Kidney Dis. 1999; 33: 688-693
        • Perry E
        • Buck C
        • Newsome J
        • et al.
        Dialysis staff influence patients in formulating their advance directives.
        Am J Kidney Dis. 1995; 25: 262-268
        • Houston TK
        • Allison JJ
        • Sussman M
        • et al.
        Culturally appropriate storytelling to improve blood pressure: a randomized trial.
        Ann Intern Med. 2011; 154: 77-84
        • Perry E
        • Swartz J
        • Brown S
        • et al.
        Peer mentoring: a culturally sensitive approach to end-of-life planning for long-term dialysis patients.
        Am J Kidney Dis. 2005; 46: 111-119
        • Cervantes L
        • Chonchol M
        • Hasnain-Wynia R
        • et al.
        Peer navigator intervention for Latinos on hemodialysis: a single-arm clinical trial.
        J Palliat Med. 2019; 22: 838-843
        • Patel MI
        • Kapphahn K
        • Dewland M
        • et al.
        Effect of a community health worker intervention on acute care use, advance care planning, and patient-reported outcomes among adults with advanced stages of cancer: a randomized clinical trial.
        JAMA Oncol. 2022; 8: 1139-1148
        • Sun A
        • Bui Q
        • Tsoh JY
        • et al.
        Efficacy of a church-based, culturally tailored program to promote completion of advance directives among Asian Americans.
        J Immigr Minor Health. 2017; 19: 381-391
        • Fahner JC
        • Beunders AJM
        • van der Heide A
        • et al.
        Interventions guiding advance care planning conversations: a systematic review.
        J Am Med Dir Assoc. 2019; 20: 227-248
      3. United States Census Bureau. 2021. accessed 11/21/2022.