Table 4 Synthesis of output for Research Question 1

Eneanya

2016 [44]

USA – Boston, Massachusetts

Patient self-report

(structured interview)

EOL care discussions

Healthcare proxy

DNR order

Black and African American (41.4%)

White (58.6%)

Significantly more Black and African American patients had not completed a healthcare proxy form or DNR order compared to White patients (51 vs. 30%; p = .01 and 78 vs. 62%; p = .04 respectively)

There were no significant ethnic difference in rates of EOL communication with healthcare professionals; 77% of all patients reported never having a prior EOL discussion with any healthcare provider. Significantly more Black patients reported not having discussions about EOL preferences with their family members or friends compared to White patients (54 vs. 27%, p = 0.01; Table 1); this persisted after adjusting for age, education, income, study site, CCI score and hospice knowledge (adjusted OR 2.70, 95% CI 1.08–6.76; Table 3)

H

Mack

2010 [47]

USA – multiple locations

Patient self-report

(structured interview)

EOL discussions

DNR orders

Black and African American (21.4%)

White (78.6%)

White patients were significantly more likely to have DNR orders than Black and African American patients (50.4% vs 30.9%, P = .005)

There was no significant difference in rates of EOL discussions between Black and African American and White patients (35.3% and 38.4%, respectively, P = .65)

H

Pettigrew

2020 [49]

USA – multiple locations

Patient self-report

(‘Care planning for individuals with dementia’ survey)

Living will

Power of attorney

Carer:

White (87.2%)

Black and African American (9.8%)

Patient:

White (88.2%)

Black and African American (10.2%)

Amongst patients with dementia, significantly fewer Black and African American patients had “legal ACP” compared with White patients (89% vs. 73%; OR = 0.32, 95% CI (0.15, 0.71), p = .005)

However, there were no significant differences between Black and African American and White patients when legal and informal ACP were considered together (95% vs. 88%; OR = 0.37, 95% CI (0.13, 1.11), p = .08) or when considering informal ACP (80% vs. 70%; OR = 0.57, 95% CI (0.28, 1.17), p = .13)

H

Shen

2016 [51]

USA – New York

Patient self-report

(structured interview)

EOL care discussions

DNR order

Hispanic (52.1%)

White (47.9%)

The relative odds of signing a DNR order were significantly lower for Latino patients than White patients (AOR = 0.37, p = .049). Latino patients who did not have EOL discussions were the least likely to complete DNR orders

Based on multiple logistic regression models, the best fitting model (based on minimum AIC) included the main and interactive effects of Latino ethnicity and EOL discussions

No significant difference in rate of EOL conversations between Latino and White patients (34% vs. 42%, p = .349)

H

Burgio

2016 [53]

USA – Birmingham, Alabama

Deceased patient’s medical records

DNR order

Advanced directive

Black and African American (34.5%)

White (65.3%)

Black and African Americans were less likely than White patients to have a DNR order (odds ratio = 0.67 (0.55,0.84) p = 0.004), or an advanced directive (odds ratio = 0.71 (0.54,0.93) p = 0.023). In the multi-variable analyses controlling for other variables thought to be potentially related to the end points, racial differences remained significant

M

Garrido

2014 [56]

USA – Boston, Massachusetts

Patient self-report

(structured interview)

DNR order

White (72.1%)

Black and African American (15.3%)

Hispanic (12.5%)

Significantly more White patients (45%) reported having a DNR order than Black and African American or Hispanic patients (25% and 20% respectively: p < .001)

M

Grill

2021 [57]

USA – Washington

Patient self-report

(The Lyon Family Centered ACP Survey-Patient Version Revised)

Advanced directive

Healthcare Power of Attorney

African American (86.1%)

Non-African-American (11.2%)

36% of non-African Americans had completed advanced directives, compared to 12% of African Americans. 10 (40%) non-African Americans had written down thoughts about future care plans, in contrast with 58 (30.2%) African Americans

M

Kirtane

2018 [59]

USA – Washington

Electronic health records and death certificates

Living will

Healthcare power of attorney

White (84.2%)

Black and African American (4.8%)

Asian (6.4%)

Pacific (0.5%)

Hispanic (1.7%)

Minority other (2.3%)

Non-White ethnicity was associated with a lower rate of advance care planning overall (odds ratio = 0.60 (0.43 – 0.82), p < .01), and advanced care planning more than 30 days before death (odds ratio = 0.59 (0.42 – 0.83), p < .01). However, rates of advance care planning within the last 30 days of life were roughly equal for the two racial groups

M

Phipps

2003 [62]

USA—Philadelphia

Patient self-report (structured interview)

Advanced directive

Healthcare power of attorney

Patients:

African American (55.8%)

White (44.2%)

White patients were significantly more likely to have a power of attorney (34% v 8%, P <  = .01) and advanced directive (41% v 11%, P = .004) than African American patients

M

Sharma

2011 [64]

USA – Chicago, Illinois

Medical chart review

DNR order

Advanced directive

Power of attorney

White (63%)

Black (32%)

Other (5%)

Black and African American patients were significantly more likely to have a power of attorney (OR = 0.41 (0.15 – 1.14), p = .01)

No significant differences were found between Black and African American and White patients for DNR order (OR = 1.21 (0.68, 2.16) p = .51) or advanced directive (OR = 0.76 (0.36 – 1.58), p = 0.46)

Compared to White patients, Black patients had higher odds of having a discussion about hospice (AOR 2.11; 95% CI 1.18–3.76) and being referred to hospice (AOR 2.18; 95% CI 1.21–3.93)

M

Smith

2007 [65]

USA – Boston, Massachusetts

Patient self-report (survey)

Living will

Health care proxy

EOL discussions

Black and African American (14.3%)

White (85.7%)

Significantly fewer Black and African American patients had at least 1 type of ACP than White patients (47% vs. 79.5%, p < .001) (adjusted relative risk [aRR] = 0.66, 95%CI = 0.52–0.84)

Black and African American patients were significantly less likely than White patients to have a living will (14.9% vs. 54.9%, p < .001), or a health care proxy (22.1% vs. 51.3%, p < .001)

M

Smith

2008 [15]

USA – Boston, Massachusetts

Patient self-report (structured interview)

Living will

DNR order

EOL discussions

White (69.4%)

Black (16.7%)

Hispanic (13.8%)

29% of patients discussed plans for EOL care with their physician, which did not differ by race/ethnicity. However Black and African American patients were 41% less likely, and Hispanic patients 40% less likely than White patients to have an ACP (aRR, black vs. white patients, 0.59 [95% CI, 0.46 to 0.77]; Hispanic vs. white patients, 0.60 [95% CI, 0.45 to 0.82])

M

Taylor

2015 [66]

USA – Houston, Texas

Medical chart review

Living will

Medical power of attorney

White (60%)

Black and African American (16%)

Asian (4%)

Hispanic (20%)

Non-White patients were significantly less likely to have formal ACP documentation (24% vs. 76%, p = .009). This remained even if they were enrolled in hospice (12% vs. 31%, p = .007). 67% of non-white patients did not have a medical power of attorney or a living will, compared to 24% of white patients; once enrolled in hospice this disparity corrected to 31% of non-white patients compared with 12% of white patients

M

Zaide

2012 [68]

USA – New York

Review of medical charts

Advanced directive

White (47%)

Black and African American (35%)

Asian (11%)

Hispanic (7%)

Black and African American patients (p = .0005) and Hispanic patients (p = .0042) were significantly less likely than White patients to have an advanced directive pre-palliative care consultation (PCC), but not post-PCC. Hispanics differed from whites in the overall rate of AD completion, irrespective of the timing (14.8% completed pre-PCC, 11.1% completed post-PCC, 74.1% never completed an AD – versus whites where 25.7% completed pre-PCC, 33.7% post-PCC, and 40.6% never)

M

Omondi

2017 [73]

Kenya – Nairobi

Review of medical records

Self-report (survey)

Advanced directive

African (69.9%)

Asian (22.2%)

Caucasian (6%)

Other (2%)

41.2% of terminally ill patients had completed AD. There was no statistically significant difference by ethnicity in advanced directive completion rate (p = .377)

M