Increasing severity of serious illness requires individuals to prepare and make decisions to mitigate adverse consequences of their illness. In a racial and ethnically diverse sample, the current study examined preparedness for serious illness among adults in California.
Methods:
This cross-sectional study used data from the Survey of California Adults on Serious Illness and End-of-Life 2019. Participants included 542 non-Hispanic White (52%), non-Hispanic Black (28%), and Hispanic (20%) adults who reported at least one chronic medical condition that they perceived to be a serious illness. Race/ethnicity, socio-demographic factors, health status, discrimination, mistrust, and communication with provider were measured. To perform data analysis, we used logistic regression models.
Results:
Our findings revealed that 19%, 24%, and 34% of non-Hispanic White, non-Hispanic Blacks, and Hispanic believed they were not prepared if their medical condition gets worse, respectively. Over 60% indicated that their healthcare providers never engaged them in discussions of their feelings of fear, stress, or sadness related to their illnesses. Results of bivariate analyses showed that race/ethnicity was associated with serious illness preparedness. However, multivariate analysis uncovered that serious illness preparedness was only lower in the presence of medical mistrust in healthcare providers, perceived discrimination, less communication with providers, and poorer quality of self-rated health.
Conclusion:
This study draws attention to the need for healthcare systems and primary care providers to engage in effective discussions and education regarding serious illness preparedness with their patients, which can be beneficial for both individuals and family members and increase quality of care.
GreenleeK. Making our own decisions about serious illness. Public Policy Aging Report. 2014;24(3):81–85.
2.
WarshanyKSherrillCHCavanaughJIvesTJShillidayBB. Medicare annual wellness visits conducted by a pharmacist in an internal medicine clinic. Am J Health Syst Pharm. 2014;71(1):44–49.
3.
DingfieldLEKayserJB. Integrating advance care planning into practice. Chest. 2017;151(6):1387–1393.
4.
LunderUČervBKodba-ČehH. Impact of advance care planning on end-of-life management. Curr Opin Support Palliat Care. 2017;11(4):293–298.
5.
RaoJKAndersonLALinFCLauxJP. Completion of advance directives among US consumers. Am J Prevent Med. 2014;46(1):65–70.
6.
Tamayo-VelazquezM-ISimon-LordaPVillegas-PorteroR, et al.Interventions to promote the use of advance directives: an overview of systematic reviews. Patient Educ Couns. 2010;80(1):10–20.
7.
HoubenCHSpruitMAGroenenMTWoutersEFJanssenDJ. Efficacy of advance care planning: a systematic review and meta-analysis. J Am Med Dir Assoc. 2014;15(7):477–489.
8.
PatelRVSinuffTCookDJ. Influencing advance directive completion rates in non-terminally ill patients: a systematic review. J Crit Care. 2004;19(1):1–9.
9.
BravoGDuboisM-FWagneurB. Assessing the effectiveness of interventions to promote advance directives among older adults: a systematic review and multi-level analysis. Soc Sci Med. 2008;67(7):1122–1132.
10.
OultonJRhodesSMHoweCFainMJMohlerMJ. Advance directives for older adults in the emergency department: a systematic review. J Palliat Med. 2015;18(6):500–505.
11.
WilkinsonAWengerNShugarmanLR. Literature Review on Advance Directives. Department of Health and Human Services and RAND Corporation; 2007.
12.
SolisGRManceraBMShenMJ. Strategies used to facilitate the discussion of advance care planning with older adults in primary care settings: a literature review. J Am Assoc Nurse Pract. 2018;30(5):270–279.
13.
KwakJChoYILeeYSNohHRohS. Differences in advance care planning between American Indian and white older adults. Res Gerontol Nurs. 2019;12(1):34–43.
14.
KossCSBakerTA. Where there’s a will: the link between estate planning and disparities in advance care planning by white and black older adults. Res Aging. 2018;40(3):281–302.
15.
ClarkMAPersonSDGoslineAGawandeAABlockSD. Racial and ethnic differences in advance care planning: results of a statewide population-based survey. J Palliat Med. 2018;21(8):1078–1085.
16.
CarrD.Racial and ethnic differences in advance care planning: identifying subgroup patterns and obstacles. J Aging Health. 2012;24(6):923–947.
17.
EneanyaNDWengerJBWaiteK, et al.Racial disparities in end-of-life communication and preferences among chronic kidney disease patients. Am J Nephrol. 2016;44(1):46–53.
18.
GarridoMMHarringtonSTPrigersonHG. End-of-life treatment preferences: a key to reducing ethnic/racial disparities in advance care planning?Cancer. 2014;120(24):3981–3986.
19.
HuangIANeuhausJMChiongW. Racial and ethnic differences in advance directive possession: role of demographic factors, religious affiliation, and personal health values in a national survey of older adults. J Palliat Med. 2016;19(2):149–156.
20.
JohnsonJHaydenTTrueJ, et al.The impact of faith beliefs on perceptions of end-of-life care and decision making among African American church members. J Palliat Med. 2016;19(2):143–148.
21.
KossCS. Does religiosity account for lower rates of advance care planning by older African Americans?J Gerontol Series B. 2018;73(4):687–695.
22.
PortanovaJAilshireJPerezCRahmanAEnguidanosS. Ethnic differences in advance directive completion and care preferences: what has changed in a decade?J Am Geriatr Soc. 2017;65(6):1352–1357.
23.
RhodesRLUkohaNCWilliamsKA, et al.Understanding underuse of advance care planning among a cohort of African American patients with advanced cancer: formative research that examines gaps in intent to discuss options for care. Am J Hosp Palliat Med. 2019;36(12):1057–1062.
24.
SmithAKMcCarthyEPPaulkE, et al.Racial and ethnic differences in advance care planning among patients with cancer: impact of terminal illness acknowledgment, religiousness, and treatment preferences. J Clin Oncol. 2008;26(25):4131.
25.
AhmedATWelchBTBrinjikjiW, et al.Racial disparities in screening mammography in the United States: a systematic review and meta-analysis. J Am Coll Radiol. 2017;14(2):157–165.e159.
26.
SalzTWooHStarrTDJandorfLHDuHamelKN. Ethnic disparities in colonoscopy use among colorectal cancer survivors: a systematic review. J Cancer Surv. 2012;6(4):372–378.
27.
GreenAKAvikiEMMatsoukasKPatilSKorensteinDBlinderV. Racial disparities in chemotherapy administration for early-stage breast cancer: a systematic review and meta-analysis. Breast Cancer Res Treatment. 2018;172(2):247–263.
28.
BransonCOFerreeAHohlerADSaint-HilarieM. Racial disparities in Parkinson disease: a systematic review of the literature. Adv Parkinsons Dis. 2016;5:87–96.
29.
CooperCTandyARBalamuraliTBLivingstonG. A systematic review and meta-analysis of ethnic differences in use of dementia treatment, care, and research. Am J Geriat Psych. 2010;18(3):193–203.
30.
SaadiAHimmelsteinDUWoolhandlerSMejiaNI. Racial disparities in neurologic health care access and utilization in the United States. Neurology. 2017;88(24):2268–2275.
31.
LoPrestiMADementFGoldHT. End-of-life care for people with cancer from ethnic minority groups: a systematic review. Am J Hosp Palliat Medic. 2016;33(3):291–305.
32.
WashingtonKTBickel-SwensonDStephensN. Barriers to hospice use among African Americans: a systematic review. Health Social Work. 2008;33(4):267–274.
33.
ParajuliJTarkAJaoY-LHupceyJ.Barriers to palliative and hospice care utilization in older adults with cancer: a systematic review. J Geriat Oncol. 2020;11(1):8–16.
34.
NarayanMCScafideKN. Systematic review of racial/ethnic outcome disparities in home health care. J Transcult Nurs. 2017;28(6):598–607.
35.
DongLFakeyeOAGrahamGGaskinDJ. Racial/ethnic disparities in quality of care for cardiovascular disease in ambulatory settings: a review. Med Care Res Rev. 2018;75(3):263–291.
36.
UgoweFEJacksonLRIIThomasKL. Racial and ethnic differences in the prevalence, management, and outcomes in patients with atrial fibrillation: a systematic review. Heart Rhythm. 2018;15(9):1337–1345.
37.
GoyalMKKuppermannNClearySDTeachSJChamberlainJM. Racial disparities in pain management of children with appendicitis in emergency departments. JAMA Pediatr. 2015;169(11):996–1002.
38.
MeghaniSHByunEGallagherRM. Time to take stock: a meta-analysis and systematic review of analgesic treatment disparities for pain in the United States. Pain Med. 2012;13(2):150–174.
39.
AndersonANHigginsCMHaardörferRHolstadMMNguyenMLTWaldrop-ValverdeD. Disparities in retention in care among adults living with HIV/AIDS: a systematic review. AIDS Behav. 2020;24(4):985–997.
40.
HaiderAHWeygandtPLBentleyJM, et al.Disparities in trauma care and outcomes in the United States: a systematic review and meta-analysis. J Trauma Acute Care Surg. 2013;74(5):1195.
41.
SchoenfeldAJTipirneniRNelsonJHCarpenterJEIwashynaTJ. The influence of race and ethnicity on complications and mortality after orthopedic surgery: a systematic review of the literature. Med Care. 2014;52(9):842–851.
42.
DriesmanAFisherNKondaSRPeanCALeuchtPEgolKA. Racial disparities in outcomes of operatively treated lower extremity fractures. Arch Orthop Trauma Surg. 2017;137(10):1335–1340.
43.
SigurdsonKMitchellBLiuJ, et al.Racial/ethnic disparities in neonatal intensive care: a systematic review. Pediatrics. 2019;144(2):e20183114.
44.
FloresG. Racial and ethnic disparities in the health and health care of children. Pediatrics. 2010;125(4):e979–e1020.
45.
Bishop-FitzpatrickLKindAJ. A scoping review of health disparities in autism spectrum disorder. J Autism Dev Dis. 2017;47(11):3380–3391.
46.
LeweyJShrankWHBowryADKilabukEBrennanTAChoudhryNK. Gender and racial disparities in adherence to statin therapy: a meta-analysis. Am Heart J. 2013;165(5):665–678.e661.
47.
GardnerDSDohertyMBatesGKoplowAJohnsonS.Racial and ethnic disparities in palliative care: a systematic scoping review. Fam Soc. 2018;99(4):301–316.
48.
GramlingRGajary-CootsECiminoJ, et al.Palliative care clinician overestimation of survival in advanced cancer: disparities and association with end-of-life care. J Pain Symp Manage. 2019;57(2):233–240.
49.
HoergerMPerryLMKorotkinBD, et al.State-level differences in personality and geographic disparities in access to palliative care: findings on openness. Am Soc Clin Oncol. 2018;36(34):57.
50.
JohnsonKS. Racial and ethnic disparities in palliative care. J Palliat Med. 2013;16(11):1329–1334.
51.
MohammedKAOsazuwa-PetersNSanfilippoKM. Sociodemographic and hospital level disparities in palliative care utilization among terminally ill patients with multiple myeloma. Blood. 2018;132(Supplement 1):3594–3594.
52.
PaulSHesterCWangSC, et al.Disparities associated with the receipt of palliative care in patients with metastatic gastric cancer. Am Soc Clin Oncol. 2019;37(4_Suppl):28.
53.
PayneR.Racially associated disparities in hospice and palliative care access: acknowledging the facts while addressing the opportunities to improve. J Palliat Med. 2016;19(2):131–133.
54.
ShreenivasAV. Racial Disparities in Palliative and Hospice Care Beliefs of Lung Cancer Patients. Icahn School of Medicine at Mount Sinai; 2018.
55.
TellaSHKommalapatiATandraPK. Disparities in the receipt of Palliative Care (PC) in metastatic renal cell carcinoma (mRCC). Am Soc Clin Oncol. 2019;37(15): Supple. e18108-e18108.
56.
WenYJiangCKoncickiHM, et al.Trends and racial disparities of palliative care use among hospitalized patients with ESKD on dialysis. J Am Soc Nephrol. 2019;30(9):1687–1696.
57.
ArenellaC. Hospice and palliative care for African Americans: overcoming disparities. J Palliat Med. 2016;19(2):126–126.
58.
CervantezSRTennerLLSchmidtS, et al.Symptom burden and palliative referral disparities in an ambulatory South Texas cancer center. Front Oncol. 2018;8:443.
59.
EjemDBBarrettNRhodesRL, et al.Reducing disparities in the quality of palliative care for older African Americans through improved advance care planning: study design and protocol. J Palliat Med. 2019;22(S1):S–90-S–100.
60.
EvansBCUmeE.Psychosocial, cultural, and spiritual health disparities in end-of-life and palliative care: where we are and where we need to go. Nurs Outlook. 2012;60(6):370–375.
61.
GardnerDSDohertyM. Exploring palliative care disparities in racially and ethnically diverse community-dwelling older adults. Innovat Aging. 2019;3(Suppl 1):S746.
62.
DillonPJBasuA. African Americans and hospice care: a culture-centered exploration of enrollment disparities. Health Commun. 2016;31(11):1385–1394.
63.
DillonPJBasuA. Toward eliminating hospice enrollment disparities among African Americans: a qualitative study. J Health Care Poor Underserved. 2016;27(1):219–237.
64.
HainesKLJungHSZensTTurnerSWarner-HillardCAgarwalS.Barriers to hospice care in trauma patients: the disparities in end-of-life care. Am J Hosp Palliat Medic. 2018;35(8):1081–1084.
65.
ParedesAZHyerJMPalmerELustbergMBPawlikTM. Racial/ethnic disparities in hospice utilization among Medicare beneficiaries dying from pancreatic cancer. J Gastrointest Surg. 2020;25(1):155–161.
66.
RhodesRLTenoJMConnorSR. African American bereaved family members’ perceptions of the quality of hospice care: lessened disparities, but opportunities to improve remain. J Pain Symp Manag. 2007;34(5):472–479.
67.
RizzutoJAldridgeMD. Racial disparities in hospice outcomes: a race or hospice-level effect?J Am Geriatr Soc. 2018;66(2):407–413.
68.
TurkmanYEWilliamsCPJacksonBE, et al.Disparities in hospice utilization for older cancer patients living in the deep south. J Pain Sympt Manage. 2019;58(1):86–91.
69.
FrahmKABrownLMHyerK. Racial disparities in end-of-life planning and services for deceased nursing home residents. J Am Med Dir Assoc. 2012;13(9):819.e817–819.e811.
70.
KaranthSRajanSSSharmaGYamalJ-MMorganRO. Racial-ethnic disparities in end-of-life care quality among lung cancer patients: a SEER-Medicare–based study. J Thorac Oncol. 2018;13(8):1083–1093.
71.
LyonMESquiresLD’AngeloLJ, et al.FAmily-CEntered (FACE) advance care planning among African-American and non-African-American adults living with HIV in Washington, DC: a randomized controlled trial to increase documentation and health equity. J Pain Symp Manage. 2019;57(3):607–616.
72.
ZaideGBPekmezarisRNouryanCN, et al.Ethnicity, race, and advance directives in an inpatient palliative care consultation service. Palliat Support Care. 2013;11(1):5–11.
73.
WelchLCTenoJMMorV. End-of-life care in black and white: race matters for medical care of dying patients and their families. J Am Geriat Soc. 2005;53(7):1145–1153.
74.
GerstKBurrJA. Planning for end-of-life care: black-white differences in the completion of advance directives. Res Aging. 2008;30(4):428–449.
BazarganMCobbSAssariS. Discrimination and medical mistrust in a racially and ethnically diverse sample of California adults. Ann Fam Med. 2021;19(1):4–15.
GunasekaraFICarterKBlakelyT.Change in income and change in self-rated health: systematic review of studies using repeated measures to control for confounding bias. Soc Sci Med. 2011;72(2):193–201.
79.
IdlerELBenyaminiY. Self-rated health and mortality: a review of twenty-seven community studies. J Health Soc Behav. 1997;38(1):21–37.
80.
MavaddatNParkerRASandersonSMantJKinmonthAL. Relationship of self-rated health with fatal and non-fatal outcomes in cardiovascular disease: a systematic review and meta-analysis. PLoS One. 2014;9(7):e103509.
81.
MoorISpallekJRichterM. Explaining socioeconomic inequalities in self-rated health: a systematic review of the relative contribution of material, psychosocial and behavioural factors. J Epidem Commun Health. 2017;71(6):565–575.
82.
HerbstsomerRAStahlST. Cross-cultural experiences of hospice and palliative care services: a thematic analysis. Omega. 2020:0030222820904205.
83.
ElliottAMAlexanderSCMescherCAMohanDBarnatoAE. Differences in physicians’ verbal and nonverbal communication with black and white patients at the end of life. J Pain Sympt Manag. 2016;51(1):1–8.
84.
BullockK.Promoting advance directives among African Americans: a faith-based model. J Palliat Med. 2006;9(1):183–195.
85.
HongMYiEHJohnsonKJAdamekME. Facilitators and barriers for advance care planning among ethnic and racial minorities in the U.S.: a systematic review of the current literature. J Imm Minor Health. 2018;20(5):1277–1287.
86.
SteinGLBerkmanCO’MahonySGodfreyDJavierNMMaingiS.Experiences of lesbian, gay, bisexual, and transgender patients and families in hospice and palliative care: perspectives of the palliative care team. J Palliat Med. 2020;23(6):817–824.
87.
RosenblattPC. Racism and black-white relationships in end-of-life care in the United States: a speculative analysis. Illness Crisis Loss. 2009;17(2):113–124.
88.
BarnesCMuellerKFawcettLWagnerB.Living and dying in a disparate health care system: rationale and strategies for cultural humility in palliative and hospice care physical therapy. Rehabilitat Oncol. 2020;38(1):30–38.
89.
RogersREagleTFSheetzA, et al.The relationship between childhood obesity, low socioeconomic status, and race/ethnicity: lessons from Massachusetts. Child Obes. 2015;11(6):691–695.
90.
IcelandJ. Racial and ethnic inequality in poverty and affluence, 1959-2015. Populat Res Poli Rev. 2019;38(5):615–654.
91.
ShenMJPetersonEBCostas-MuñizR, et al.The effects of race and racial concordance on patient-physician communication: a systematic review of the literature. J Rac Ethn Health Dis. 2018;5(1):117–140.
92.
MelhadoLBushyA.Exploring uncertainty in advance care planning in African Americans: does low health literacy influence decision making preference at end of life. Am J Hosp Palliat Med. 2011;28(7):495–500.
93.
OrlovicMSmithKMossialosE.Racial and ethnic differences in end-of-life care in the United States: evidence from the Health and Retirement Study (HRS). SSM Populat Health. 2019;7:100331.
94.
SandersJJRobinsonMTBlockSD. Factors impacting advance care planning among African Americans: results of a systematic integrated review. J Palliat Med. 2016;19(2):202–227.
95.
FischerSMSauaiaAMinS-JKutnerJ. Advance directive discussions: lost in translation or lost opportunities?J Palliat Med. 2012;15(1):86–92.
96.
WatersCM. Understanding and supporting African Americans’ perspectives of end-of-life care planning and decision making. Qual Health Res. 2001;11(3):385–398.
97.
KaplanLMSudoreRLCuervoIABaintoDOlsenPKushelM. Barriers and solutions to advance care planning among homeless-experienced older adults. J Palliat Med. 2020;23(10):1300–1306.
98.
JohnsonSButowPKerridgeITattersallM. Advance care planning for cancer patients: a systematic review of perceptions and experiences of patients, families, and healthcare providers. Psychooncology. 2016;25(4):362–386.
99.
AlRuthiaYSalesIAlmalagH, et al.The relationship between health-related quality of life and trust in primary care physicians among patients with diabetes. Clin Epidemiol. 2020;12:143.
100.
AlpersLM.Distrust and patients in intercultural healthcare: a qualitative interview study. Nurs Eth. 2018;25(3):313–323.
101.
BerryLLParishJTJanakiramanR, et al.Patients’ commitment to their primary physician and why it matters. Ann Fam Med. 2008;6(1):6–13.
102.
AbelWMEfirdJT. The association between trust in health care providers and medication adherence among Black women with hypertension. Front Public Health. 2013;1:66.
103.
CuffeeYLHargravesJLRosalM, et al.Reported racial discrimination, trust in physicians, and medication adherence among inner-city African Americans with hypertension. Am J Publ Health. 2013;103(11):e55–e62.
104.
ArmstrongKPuttMHalbertCH, et al.Prior experiences of racial discrimination and racial differences in health care system distrust. Med Care. 2013;51(2):144.
105.
BenkertRPetersRMClarkRKeves-FosterK. Effects of perceived racism, cultural mistrust and trust in providers on satisfaction with care. J Natl Med Assoc. 2006;98(9):1532–1540.
106.
McLennanVEJBoddyJHMDalyMGChenowethLM. Relinquishing or taking control? Community perspectives on barriers and opportunities in advance care planning. Aust Health Rev. 2015;39(5):528–532.
107.
SandersJJJohnsonKSCannadyK, et al.From barriers to assets: rethinking factors impacting advance care planning for African Americans. Pall Supp Care. 2019;17(3):306–313.
108.
GreerTMBrondoloEBrownP. Systemic racism moderates effects of provider racial biases on adherence to hypertension treatment for African Americans. Health Psychol. 2014;33(1):35.
109.
PeekMENunez-SmithMDrumMLewisTT. Adapting the everyday discrimination scale to medical settings: reliability and validity testing in a sample of African American patients. Ethnic Dis. 2011;21(4):502.
110.
ShaversVLFaganPJonesD, et al.The state of research on racial/ethnic discrimination in the receipt of health care. Am J Pub Health. 2012;102(5):953–966.
111.
AgomDANeillSAllenS, et al.Construction of meanings during life-limiting illnesses and its impacts on palliative care: ethnographic study in an African context. Psycho Oncol. 2019;28(11):2201–2209.
112.
Dionne-OdomJNEjemDWellsR, et al.How family caregivers of persons with advanced cancer assist with upstream healthcare decision-making: a qualitative study. PLoS One. 2019;14(3):e0212967.
113.
López-CevallosDFHarveySMWarrenJT. Medical mistrust, perceived discrimination, and satisfaction with health care among young-adult rural Latinos. J Rural Health. 2014;30(4):344–351.
114.
MattocksKMGibertCFiellinD, et al.Mistrust and endorsement of human immunodeficiency virus conspiracy theories among human immunodeficiency virus-infected African American veterans. Mil Med. 2017;182(11):e2073–e2079.
115.
BirkhäuerJGaabJKossowskyJ, et al.Trust in the health care professional and health outcome: a meta-analysis. PLoS One. 2017;12(2):e0170988.
116.
SchoenthalerAMontagueEBaier ManwellLBrownRSchwartzMDLinzerM. Patient–physician racial/ethnic concordance and blood pressure control: the role of trust and medication adherence. Ethnic Health. 2014;19(5):565–578.
117.
HaywoodCLanzkronSBediakoS, et al.Perceived discrimination, patient trust, and adherence to medical recommendations among persons with sickle cell disease. J Gener Int Med. 2014;29(12):1657–1662.
118.
AlRuthiaYAlmalagHSalesI, et al.The relationship between trust in primary care physicians and medication knowledge among diabetic patients. Res Soc Administrat Phar. 2019;15(6):656–661.
119.
Van LeuvenK. Advance care planning in healthy older adults. Californ J Health Promot. 2011;9(2):6–14.
120.
StruckBDBrownEAMadisonS. Advance care planning in the outpatient geriatric medicine setting. Prim Care. 2017;44(3):511–518.
121.
de CaprariisPJRuckerBLyonC. Discussing advance care planning and directives in the general population. South Med J. 2017;110(9):563–568.
