- Asch D.A.
- Hansen-Flaschen J.
- Lanken P.N.
Opinions on care at the end of life.
- Calanzani Natalia K.J.
- Higginson Irene J.
- Froman R.
- Owen S.
- 1.How, if at all, does patients' and families' cultural background influence the acceptability of ACP for seriously ill patients?
- 2.How might ACP need to be adapted to make it more cross-culturally appropriate?
- 3.What cultural factors do clinicians need to be aware of in approaching communication and planning with patients and families about EOL issues?
Design, Protocol, and Registration
- Selman L.
- McDermott E.
Ethnicity (noun) definition Oxford Dictionaries, accessed online. Available from https://en.oxforddictionaries.com/definition/ethnicity.
Information Sources and Searches
|Via OvidSP||AMED (Allied and Complementary Medicine) 1985 to March 2017|
|PsycINFO 1806 to March, Week 4, 2017|
|Embase 1974 to 2017 March 26|
|Ovid MEDLINE(R) Epub Ahead of Print, In-Process & Other Non-Indexed Citations, Ovid MEDLINE(R) Daily, Ovid MEDLINE and Versions (R)|
|Database(s)||Advance Care Planning||Cultural Factors||Acceptability|
|OvidSP: AMED, PsycINFO, Embase, Ovid MEDLINE, CINAHL, Cochrane||(exp Advance Care Planning/) or (advance care plan*.tw.) or (care plan.tw.)||(exp Ethnic Groups/ or exp cross-cultural comparison/ or exp cultural characteristics/ or exp cultural diversity/)||(exp Patient Preference/eh, px [Ethnology, Psychology]) or (exp "Patient Acceptance of Health Care"/eh, px, sn [Ethnology, Psychology, Statistics & Numerical Data]) or (exp Attitude to Death/) or ((acceptability or acceptable or uptake or engage or engagement or preference or preferences).tw.)|
|CINAHL||(MM "Advance Care Planning") OR TI ("care plan" or "advance care plan") AND AB ("care plan" or "advance care plan")||(MH "Ethnic Groups+") OR (MH "Ethnological Research") OR (MH "Culture+") OR (MH "Cultural Diversity") OR (MH "Cultural Values")||(MH "Patient Satisfaction") OR "Patient Acceptance of Health Care" OR (MH "Attitude to Death") OR (MH "Attitude to Medical Treatment") OR TI (acceptability or acceptable or uptake or engage or engagement or preference or preferences) AND AB (acceptability or acceptable or uptake or engage or engagement or preference or preferences) OR TI patient preference AND AB patient preference|
|Cochrane Library||MeSH descriptor: [Advance Care Planning] explode all trees OR advance care plan*:ti,ab,kw (Word variations have been searched) OR care plan:ti,ab,kw (Word variations have been searched)||MeSH descriptor: [Ethnic Groups] explode all trees OR MeSH descriptor: [Cross-Cultural Comparison] explode all trees OR MeSH descriptor: [Cultural Characteristics] explode all trees OR MeSH descriptor: [Cultural Diversity] explode all trees||MeSH descriptor: [Patient Preference] explode all trees OR MeSH descriptor: [Patient Acceptance of Health Care] explode all trees OR MeSH descriptor: [Attitude to Death] explode all trees OR acceptability or acceptable or uptake or engage or engagement or preference or preferences:ti,ab,kw (Word variations have been searched)|
Data Collection Process and Data Items
|No (#)||Author||Title||Country/Setting||Population||Ethnicity/Race of Patients||Methodology|
|ACP Process Studied||Main Finding Regarding Acceptability of ACP||Quality Appraisal Score; Missing Items|
|1||Balboni et al.|
|Religiousness and spiritual support among advanced cancer patients and associations with end-of-life treatment preferences and quality of life||U.S.—eight cancer centers/hospitals/PC centers/oncology departments/veteran health care centers in CT, NY, TX, MA, and NH||n = 230, advanced cancer patients with failure of first-line chemotherapy, aged ≥20 yrs, with adequate stamina to complete interview, without dementia or delirium, spoke English or Spanish, and unpaid caregiver||White 140 (61%), black 44 (19%), Hispanic 39 (17%), Asian 5 (2%), and other 2 (1%). Of 100 participants from southern institutions, 61% were nonwhite; of 130 from northeastern institutions, 22% were nonwhite (self-identified)||QUAN—survey, hospital chart review, statistical analysis (McNemar's test, linear regression, univariate models, multivariate analysis, logistic regression)||LW, DPOA, and DNR||Greater religiousness/spirituality is associated with lower levels of formal ACP completion||50; (4.2) samples not representative of the population under study and (4.4) less than 60% response rate (42% [230/538])|
|2||Braun et al.|
|The physician's professional role in end-of-life decision-making: voices of racially and ethnically diverse physicians||U.S.—Texas Medical Center, Houston||n = 26, internists and specialists (doctors) who commonly treated patients in end stages of disease, purposively sampled to include ethnic minority doctors, seven racially/ethnically homogenous focus groups and moderators||Three focus groups with Caucasian patients, n = 11. Two focus groups with AA patients, n = 8. Two focus groups with Hispanic patients, n = 7 (self-identified)||QUAL—focus groups, semistructured interviews, thematic analysis using grounded theory||Doctor's EOL discussion and decision-making style and valuing of addressing patient's religious/spiritual needs||Doctors felt that patient ethnicity/race is clinically relevant to some aspects of informal ACP. Concordance/discordance of clinician' and patient' ethnicity/race was thought more important by AA than Caucasian doctors.||75; (1.4) no consideration of how findings relate to researchers' influence|
|3||Braun et al.|
|Decision-making styles of seriously ill male veterans for end-of-life care: autonomists, altruists, authorizers, absolute trusters, and avoiders||U.S.—Michael E. DeBakey VA Medical Center (MEDVAMC) in Houston, Texas||n = 44, “seriously ill” patients (lists included diagnoses in Table 2), arranged in eight racially/ethnically homogenous focus groups, purposively sampled||Two focus groups with AA patients n = 14, three focus groups with Hispanic patients n = 17, and focus groups with Caucasian patients n = 13 (self-identified)||QUAL—focus groups, inductive thematic analysis||EOL decision-making style||Five different types of EOL decision-making style (autonomists, altruists, authorizers, absolute trusters, and avoiders) influence acceptability of formal ACP. EOL decision-making style was suggested to be associated with different racial/ethnic groups (i.e., no white patients were “Avoiders”), although this relationship was not confirmed.||75; (1.4) no consideration of how findings relate to researchers' influence|
|4||Collins et al.|
|Perspectives on death, dying and advance care planning from patients receiving haemodialysis||Ireland—acute renal unit in Irish hospital||n = 50 (67% of eligible population) individuals receiving hemodialysis for more than three months||“Irish patients”—those who were not “Irish” (5% of the unit) and those who could not speak/understand English were excluded||QUAN—questionnaire and descriptive statistics||Importance of 20 wide-ranging EOL care issues (Table 5)||Most Irish dialysis patients wished to know their prognosis if they had less than six months to live (60%) and wanted honest answers from their doctors.||50; (4.2) samples representative of population under study and (4.3) validity of instrument used for measurements not known|
|5||DeSanto-Madeya et al.|
|Associations between United States acculturation and the end-of-life experience of caregivers of patients with advanced cancer||U.S.—four comprehensive cancer centers in the Northeast and two in the Southwest||n = 167 identified primary, unpaid, informal caregivers of patients with diagnosed advanced cancer, where both patient and caregiver could speak English or Spanish and neither met criteria for dementia or delirium||White n = 79, black n = 8, Asian n = 8, Hispanic n = 71, and other n = 1 (self-reported by caregiver)||QUAN—chart review and questionnaire, descriptive statistics (t-test, Pearson correlation, logistical regression)||EOL preferences and medical decision-making, physician-caregiver communication including doctor's listening and information provided||Caregivers' level of acculturation influenced their EOL preferences and EOL medical decision-making, for example, being less acculturated was associated with being more likely to perceive that doctors had provided too much information.||50; (4.2) reasons for eligible participants not participating are not addressed and (4.4) less than 60% response rate (32% [167/448])|
|6||Frey et al.|
|Advance care planning for Maori, Pacific and Asian people: the views of New Zealand healthcare professionals||NZ—Hospitals, general practice, Maori community support services, and Pacific and Asian hospital support services||n = 40, health and social care professionals with a wide range of knowledge and experience in PC||NZ European (19), Maori ethnicity (3), or membership in a Pacific (3), Asian (5), Southeast Asian (7), or other European (3) (self-reported)||QUAL—interviews, focus groups, thematic analysis||ACP defined as “a voluntary process of discussion about future care between an individual and their [sic] care providers, irrespective of discipline”||Maori, Pacific, and Asian families/whanau in NZ are reluctant to engage in ACP conversations||50; (1.3) no consideration of how findings relate to context/setting and (1.4) no consideration of how findings relate to researchers' influence|
|7||Gabbay et al.|
|Negotiating end-of-life decision making: a comparison of Japanese and U.S. residents' approaches||U.S. + Japan—two U.S. sites in LA, California (one with predominantly poor, veteran population), and five Japanese sites in Central Honshu, Kyushu, Okinawa||n = 347 (103 internal medicine residents in U.S. and 244 general medical practice residents in Japan)||103 U.S. residents and 244 Japanese residents (ethnicity not recorded)||QUAN—nonrandomized cross-sectional questionnaire and descriptive statistics (chi-square tests and t-tests)||EOL decision-making, diagnostic and prognostic disclosures, and involvement of family||Differences were found in American and Japanese clinicians' approaches to EOL decision-making. Japanese clinicians were more likely to inform a patient's family members about diagnosis/prognosis, before the patient themselves (44%:2%, P < 0.001).||75; (3.3)—they could not fully assess for differences between sites in U.S./Japan and therefore do not control for this|
|8||Garrido et al.|
|End-of-life treatment preferences: a key to reducing ethnic/racial disparities in advance care planning?||U.S.—outpatient clinics in five states (Connecticut, Massachusetts, New Hampshire, New York, and Texas)||n = 606 patients from the five centers who had advanced cancer and spoke English or Spanish and were cognitively able to participate||Non-Latino whites n = 437, blacks n = 93, and Latinos n = 76||QUAN—nonrandomized cross-sectional baseline interviews, descriptive statistics (bivariate tests)||DNR order completion||White non-Latino patients were more likely to have a DNR order (45%) than black (25%) and Latino (20%) patients (P < 0.001). Individuals with DNR orders had lower levels of positive religious coping than those without DNR orders (30% vs. 40%; P = 0.048).||75; (3.2) as methods for measuring each preference not validated|
|9||Hopp et al.||Racial variations in end-of-life care||U.S.—older persons living in continental U.S. outside of institutional settings at onset of AHEAD study||n = 540 relatives (proxy respondents) for persons who died between 1993 and 1995; including 169 spouses, 247 children, and 124 other relatives||White n = 454 and black n = 86 (others excluded because of small sample size of respondents)||QUAN—secondary analysis of phone or in-person survey data, descriptive statistics (logistical regression modeling)||LW, DPOA, and EOL discussion including treatment preferences||Deceased AAs were 63% less likely than WAs to have had an EOL discussion before death (P < 0.001). Ethnicity/race continued to be a significant predictor of ACP uptake even after logistic regression modeling to control for sociodemographic factors.||75; (4.2) samples not representative of population under study (decedents included in this study were more likely to be older, male, and to have lower educational attainment)|
|10||Janssen et al.|
|A call for high-quality advance care planning in outpatients with severe COPD or chronic heart failure||The Netherlands—one academic and five general hospitals||n = 185 outpatients with severe COPD (n = 105) or chronic heart failure (n = 80)||Dutch||QUAN—nonrandomized prospective cross-sectional survey, logistic regression analysis||Discussion of preferences for CPR or MV, prognosis of survival, dying process, and PC, according to patients and clinicians. Quality of communication.||Doctors reported greater rate of having had ACP communication than patients. Most Dutch COPD or heart failure patients were able to indicate their preferences regarding life-sustaining treatments. Doctors rarely discussed prognosis, dying, or PC.||50; (3.2) validity of survey tools used not stated and (3.4) less than 60% response rate (for patients with heart failure)|
|11||Kataoka-Yahiro et al.|
|Advance care planning among Asian Americans and Native Hawaiians receiving haemodialysis||Hawaii—four outpatient dialysis centers in the island of Oahu, Honolulu||n = 50 CKD hemodialysis patients of Asian American or Native Hawaiian ethnicity with ability to read/understand English and capacity for informed consent||62% Asian Americans, 24% Native Hawaiians, and 14% mixed Asian American + Native Hawaiian||QUAN—survey and descriptive statistics||AD, LW, and ACP (process of communication among patients, families, and health care providers addressing EOL care)||Most patients' attitudes about ACP were positive; however, less than half (40%) had completed formal ACP such as AD or LW, despite most having heard of these processes.||50; (4.2) samples not representative of understudy population and (4.3) as questionnaire tool not validated|
|12||Kurella Tamura et al.|
|Preferences for dialysis withdrawal and engagement in advance care planning within a diverse sample of dialysis patients||U.S.—University of California San Francisco Mt. Zion Hemodialysis Center and the San Francisco Veterans Affairs Medical Center Hemodialysis Center||n = 62 end-stage renal disease (ESRD) patients who were fluent in English and without an active psychiatric disorder including schizophrenia and dementia or a learning disability (about 23% of the clinic did not meet these criteria)||Black n = 23, Latino n = 7, white n = 21, Asian n = 10, (1 participant failed to complete questionnaire and was excluded) (self-reported)||QUAN—questionnaire, medical chart review, Fisher's exact test||EOL discussions, AD, DNR/DNI||Rates of engagement in informal ACP (EOL discussion) were generally higher than for formal ACP (documentation). Racial/ethnic minorities were not less likely to engage in EOL discussions: AAs were more likely to engage in EOL discussions with health care professionals than whites (70% vs. 38%) (P < 0.01).||75; (4.2) samples not representative of understudy population (only recruited English-speaking participants)|
|Racial/ethnic variation in care preferences and care outcomes among United States hospice enrollees||U.S.—657 hospice-providing agencies in the U.S.||n = 3661 Medicare hospice patients (representing 788,872 patients) (Medicare is 82% of hospice care in U.S.)||White, black, and Hispanic (as reported on charts)||QUAN—NHHCS hospice care survey statistical analysis (F-statistics, chi-squared tests, ANOVA)||AD, DNR, HC proxy||Black hospice patients were less likely to complete an AD than whites (80%:93%) (P = 0.004). Hispanic hospice patients were 3.68 times more likely to have signed a DNR order than whites (P < 0.01) and 3.67 times as likely as blacks (P < 0.001).||75; (4.3) “unique” unvalidated variable of emergent care use|
|14||Loggers et al.|
|Predictors of intensive end-of-life and hospice care in Latino and white advanced cancer patients||U.S.—eight cancer centers/hospitals/PC centers/oncology departments/veteran health care centers in five states||n = 292 stage IV cancer patients with metastatic disease refractory to first-line chemotherapy||Latino (n = 58) and white (n = 234) (self-reported)||QUAN—nonrandomized cohort study[Coping with Cancer (CWC)], statistical analysis (stratified logistical regression)||EOL discussion, DNR||Latino patients were less likely to acknowledge their condition was terminal than whites (19%:47.4%, AOR 0.18) (P = 0.0001) and less likely to have DNR orders than whites (22.4%:50.4%, AOR 0.23) (P = 0.0003). No differences in the rate of positive religious coping, EOL discussions, or preferences for life-extending care among Latino and white patients.||100|
|15||Mack et al.|
|Racial disparities in the outcomes of communication on medical care received near death||U.S.—eight cancer centers/hospitals/PC centers/oncology departments/veteran health care centers in five states||n = 332 advanced cancer patients who participated in and died during the CWC study||White (n = 261) and black (n = 71) (self-identified)||QUAN—nonrandomized cohort study (CWC), statistical analysis (stratified logistical regression, bivariable and multivariable)||EOL discussion regarding “wishes about care would want to receive if dying,” achievement of communication goals, DNR orders||Similar rates of EOL discussions in black and white patients (35%:38%). EOL discussions associated with achieving some communication goals among black patients, including placement of DNR orders (AOR 4.25, P = 0.04), but this did not translate into a reduction of life-prolonging care, as occurred with white patients.||100|
|16||Nakazawa et al.|
|Palliative care physicians' practices and attitudes regarding advance care planning in palliative care units in Japan: a nationwide survey||Japan—99 palliative care units (PCUs)||n = 99 doctors working in PCUs in Japan who responded to survey request||Japanese doctors/residents, ethnicity not recorded||QUAN—survey, descriptive statistics (chi-square test, Fisher's exact test)||AD: “directions recorded by competent individuals to allow them to influence treatment decisions in the event of serious illness and subsequent loss of competence.”|
ACP: “making decisions about patient's future health care by a patient in consultation with health care providers, family members, and important others, should they become incapable of medical treatment decisions.”
|86.9% of doctors agreed that “ACP is an effective way for patients to influence their medical treatment, should they lose competence”; however, many failed to implement aspects of ACP such as recommending completion of ADs and designation of health care proxies or implementing existing ADs.||50; (4.2) samples not representative of understudy population as self-selecting participants and (4.4) less than 60% response rate (49%)|
|17||Periyakoil et al.|
|No easy talk: a mixed methods study of doctor reported barriers to conducting effective end-of-life conversations with diverse patients||U.S.—two large training hospitals in California (Stanford Hospital and Clinics and the VA Palo Alto)||n = 1040 multispecialty doctors who care for seriously ill patients (n = 8 did not identify any barriers, so did not participate, n = 1032 remaining), development cohort n = 29, validation cohort n = 966||Caucasian n = 485, Latino-American n = 58, AA n = 34, Asian n = 335, and mixed ethnicity/race n = 84 (presumed self-reported in survey, although this not clearly stated)||MIXED METHODS—sequential exploratory design: survey then grounded theory analyses||EOL conversations||99.9% doctors reported barriers to conducting EOL conversations with patients, especially those of different ethnicity/race, including language, religious/spiritual beliefs, health literacy, and cultural differences in truth handling and decision-making. Doctor's ethnicity did influence their level of reported barriers (Chi-square = 12.77, DF = 4, P = 0.0125).||75; (5.3) no triangulation or consideration of divergence of qualitative/quantitative results and (1.4) no consideration of how findings relate to researchers' influence|
|18||Perry et al.|
|Peer mentoring: a culturally sensitive approach to end-of-life planning for long-term dialysis patients||U.S.—21 dialysis centers across Michigan||n = 203 dialysis patients||38% were AA||QUAN—RCT and generalized least squares estimation for multilevel binomial models||Intervention: peer mentoring on EOL decision-making—dialysis patients trained to help other patients through eight contacts over two- to four-month period, semistructured, detailed on p113 of paper||Peer mentoring intervention increased completion of ADs (P < 0.001), comfort discussing ADs (P < 0.01), and improved subjective well-being (P < 0.05) among AA patients compared with printed materials and control group. (These effects did not occur for white patients, although printed materials did decrease reported suicidal ideation in whites [P < 0.05]).||75; (2.2) no description of allocation concealment from researchers or participants|
|19||Phipps et al.|
|Approaching the end of life: attitudes, preferences, and behaviors of African-American and white patients and their family caregivers||U.S.—patients from cancer centers, tumor registries, or recruited through oncologists/doctors||n = 68 patients with stage III-B or IV lung or stage IV colon cancer and n = 68 patient-designated family caregivers (of 159 eligible) (of 198 identified but 38 died before time of contact)||AA n = 38 and white n = 30||MIXED METHODS—interviews and medical records review, statistical analysis and coding of qualitative data||LW, completion of an HC proxy directive, DPOA for health care and EOL discussions||White patients were more likely than AA patients to have completed formal ACP including DPOA (34%:8%, P = 0.01) and LW (41%:11%, P = 0.004).||75; (5.3) no triangulation or consideration of divergence of qualitative/quantitative results and (4.4) less than 60% response rate (42% 68/159)|
|20||Sharma et al.|
|Documentation of information and care planning for patients with advanced cancer: associations with patient characteristics and utilization of hospital care||U.S.—Johns Hopkins Hospital and Sidney Kimmel Comprehensive Cancer Center, Baltimore||n = 238 deceased patients with advanced cancer, primarily Medicaid, who died between two and 15 months after diagnosis and had at least three hospital visits||White n = 151, black n = 76, and other n = 11||QUAN—retrospective cross-sectional hospital chart review, descriptive statistics (multivariate logistic regression, chi-squared tests, ANOVA)||AD, DPOA, DNR order, hospice discussion, and hospice referral||Rates of ACP documentation were generally low. Black patients had a higher odds of hospice discussion than white patients in the multivariate analysis (AOR 2.11; 95% CI 1.18 to 3.76) (P = 0.01).||75; (3.1) participants not recruited in a way that minimizes selection bias (all from one specialist cancer hospital, so not representative of other settings)|
|21||Smith et al.|
|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||U.S.—patients recruited through local physicians in six sites||n = 803 terminally ill patients||AA (n = 115) and white (n = 688) (no distinction between Hispanic or non-Hispanic) (self-reported)||QUAN—nonrandomized cross-sectional analysis of Commonwealth–Cummings Project data (nationwide survey), bivariable sequential statistical analysis||ACP defined as “the patient reporting on one or more of the following: a living will, a health care proxy, or having talked with family or physician about plans for end-of-life care” (i.e., LW, HC proxy, or EOL discussion)||AAs were less likely than whites to have an ACP (ARR = 0.66, 95% CI = 0.52–0.84) (P < 0.001). AAs' ratings of the quality of their patient-doctor relationships were found to be poorer than those of WAs for several measures, but the difference was not statistically significant for level of trust in doctors.||50; (3.1) participants not recruited in a way that minimizes selection bias (recruited through doctors who may be more likely to recruit patients with whom they had good relationship) and (3.2) poor validity of tool used (questions about doctor-patient relationship were skewed toward “agree”)|
|22||Smith et al.|
|Racial and ethnic differences in advance care planning among patients with cancer: impact of terminal illness acknowledgment, religiousness, and treatment preferences||U.S.—eight cancer centers/hospitals/PC centers/oncology departments/veteran health care centers in five states||n = 449 patients with advanced cancer (clinician's estimate that the patient would live less than six months and failure of first-line chemotherapy) and had an unpaid caregiver||312 non-Hispanic white, 75 non-Hispanic black, and 62 Hispanic patients (self-identified)||QUAN—nonrandomized cross-sectional CWC study, statistical analysis (chi-square test, Fisher's exact test, modified Poisson approach)||ACP defined as “patient's report of LW or DPOA/HC proxy), completed DNR order (not measured in above study), or having discussed wishes for EOL care with their physician” (i.e., LW, DPOA/HC proxy, DNR order, EOL discussion)||Compared with whites, blacks and Hispanics were less likely to have an ACP (W 80%; B 47%; and H 47%). Compared with whites, blacks and Hispanics were more likely to consider religion very important (W 44%; B 88%; and H 73%) (P < 0.001). Although black and Hispanic patients were less likely to consider themselves terminally ill, this factor did not explain observed disparities in ACP.||75; (3.2)—unknown validity of measurements used (e.g., religiousness scale)|
|23||Song et al.|
|Randomized controlled trial of SPIRIT: an effective approach to preparing African-American dialysis patients and families for end of life||U.S.—six outpatient dialysis clinics in Western Pennsylvania||n = 58 dyads: AAs with end-stage renal disease and their chosen surrogate decision-makers||All AA, n = 58||MIXED METHODS—sequential explanatory design: RCT, surveys, interviews. Statistical analysis (Fisher's exact test, Mann-Whitney U) and thematic analysis qualitative data.||Intervention: Sharing Patients' Illness Representations to Increase Trust (SPIRIT) involving identifying and exploring concerns, creating conditions for discussion and conceptual change about death/dying, introducing replacement information, encouraging future discussions, assessing need for additional support||SPIRIT intervention was well received by both patients and surrogates. SPIRIT was found to increase quality of communication scores reported by patients: intervention vs. control at T2 (one week) (U = 283.50, P = 0.03) and T3 (three months) (U = 165.00, p < 0.01) and by surrogates: intervention vs. control at T2 (U = 95.00, P < 0.01) and T3 (U = 139.00, P = 0.03).||50; (5.3) no triangulation or consideration of divergence of qualitative/quantitative results and (1.3) no consideration of how context/settings could influence findings and (1.4) no consideration of how findings relate to researchers' influence and (2.3) outcome data completed below 80% (54% participants agreed to be included in follow-up data)|
|24||True et al.|
|Treatment preferences and advance care planning at end of life: the role of ethnicity and spiritual coping in cancer patients||U.S.—patients from cancer centers, tumor registries, or recruited through oncologists/doctors||n = 68 patients with an advanced stage of lung or colon cancer||AA n = 38 and white n = 30 (self-defined)||QUAN—nonrandomized cross-sectional secondary analysis of medical records and survey data using coding and statistics (Fisher's exact test)||LW||AAs more likely than whites to report belief in divine intervention (rs = 0.27, P = 0.02) or that their fate was in the hands of higher power (rs = 0.25, P = 0.04). Patients who reported divine intervention belief less likely to have a LW (P = 0.007).||50; (3.2) unknown validity of measurements used and (3.4) less than 60% response rate (42% [68/159])|
|25||Walczak et al.|
|A question prompt list for patients with advanced cancer in the final year of life: Development and cross-cultural evaluation||Australia + U.S.—one U.S. and two Australian treatment centers||n = 34 oncology patients with advanced cancer (LE < 12 months as assessed by doctor) and n = 13 health professionals treating patients||Patients: Australia n = 15, U.S. n = 19. Health care professionals: Australia n = 7, U.S. n = 6||QUAL—interviews, focus groups, and questionnaires, coding and thematic analysis||Intervention: question prompt list (QPL)—booklet containing categorized lists of useful questions patients can ask their clinician||Both the U.S. and Australian versions of the QPL intervention were well accepted and endorsed by patients and health care professionals. Differences in Australian + U.S. approaches to EOL and prognosis discussions emerged in the interviews.||50; (1.3) no consideration of how findings relate to context and (1.4) no consideration of how findings relate to researchers' influence|
|26||Wallace et al.|
|Physician cultural sensitivity in African American advance care planning: a pilot study||U.S.—three major teaching hospitals in NY||n = 183 convenience sample of all physicians in attendance at medicine grand rounds on one specified day||White (n = 92), Asian (n = 48), and black Americans (n = 8) and non-U.S.–born black (n = 21)||QUAN—nonrandomized cross-sectional questionnaire and statistics (Student's t-test, chi-squared test)||Clinician knowledge and perceptions of AA patient preferences, cultural competence (measured by awareness of differences between ethnic groups in AD completion rates, knowledge of ACP, trust in clinicians)||72% of doctors agreed that different racial/ethnic groups have distinct attitudes toward ADs. 58% acknowledged lack of familiarity with end-of-life preferences of AA patients, although this was more commonly reported among white doctors than black doctors. 88% of U.S.-born black doctors (7/8), vs. 35% of white doctors (32/91), and 26% (5/19) of non-U.S.–born black doctors, perceived that the Tuskegee experiment has impacted AA medical decision-making (P = 0.014).||50; (3.1) participants not recruited in a way that minimizes selection bias (recruited from grand round participants, to ensure high response rate, however, limited generalizability) and (3.3) differences between groups being compared not accounted for (small groups, so multivariable analysis for potential confounders, e.g., level of training, not possible)|
|27||Zaide et al.||Ethnicity, race, and advance directives in an inpatient palliative care consultation service||U.S.—Long Island Jewish (LIJ) Medical Center, an academic tertiary hospital in New Hyde Park, New York||n = 400 patients who took part in a PCC at LIJ during the nine-month study period where chart had complete documentations of AD variables (533 total, 133 did not have full data recorded)||White n = 187, AA n = 142, and Asian n = 44||QUAN—nonrandomized cross-sectional hospital chart review, descriptive statistics (t-test, Mann-Whitney test, chi-squared test, Fisher's exact test, Bonferroni-adjusted pairwise comparisons)||Intervention: PCC with multidisciplinary team to develop a plan of care including pain/symptom relief, establishing goals of care, integration of psychological and spiritual aspects of the patient and family experience and offering support to the family during the patient's illness and the bereavement period. Outcomes: completion of AD defined as DNR or DNI||White patients completed more ADs than did nonwhite (AA, Asian, and Hispanic) patients before the intervention (25.67% vs. 12.68%) (P = 0.021). Further analysis showed AAs differed from white patients in the likelihood of AD execution rates pre-PCC, but not post-PCC. PCC intervention significantly reduced differences between white patients and AAs in completing ADs.||75; (3.4) outcome data below 80% (75% [400/533])|
Risk of Bias
Study Selection and Characteristics
PRISMA 2009 flow diagram template.
- Brunnhuber K.N.
- Stephen N.
- Meier D.E.
- Weissman D.E.
- Woodcock J.
Risk of Bias
How, If at All, Does Patients' and Families' Cultural Background Influence the Acceptability of ACP for Seriously Ill Patients?
“Uh, I don't have anything in writing, because when I ask my sisters' that's just like printing it in gold, stacking it in gold. They're going to do it.”42
“You don't have no say. The doctors have no say. Only the master has a say. So, you just wait on it.”42
Comfort Discussing Death
“certain groups feel that honesty and frankness is not good for the emotional outlook”
“some cultures approach (conversations about) death as something to be avoided at all costs.”55
“(to them) it's like hastening that possibility of their death” (Focus group with Maori patients)
“shows that we don't have faith that this person's going to live.” (Focus group with Pacific patients)
Patient Attitudes and Additional Factors
How Might ACP Need to Be Adapted to Make It More Cross-Culturally Appropriate?
Recommendations for a Focus on Communication in ACP
What Cultural Factors Do Clinicians Need to Be Aware of in Approaching Communication and Planning with Patients and Families About EOL Issues?
Clinician Training and Education in Cultural Competence
Department of Health and Human Services Office of Minority Health.
Delivering better care at end of life - The next steps.
Disclosures and Acknowledgments
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