Table 2.
Author (Year) | Study design (evidence quality) |
Population delineation (sample size) |
Socio-demographic profile of participants |
End-of-life related measures |
Elements of access addressed |
Access disparities identified by demographic |
|||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Approachability | Acceptability | Availability | Affordability | Appropriateness | Key findings | Age | Sex/ Gender |
Race/ Ethnicity |
Education | SES/ Insurance |
Disease/ Severity |
Other | |||||
Quantitative Studies | |||||||||||||||||
Andrews, et al (2014)19 | Cross-sectional (III, C) | – Young muscular dystrophy patients (2) – Family caregivers (32) |
– 28% Hispanic caregivers – 6% of caregivers spoke better Spanish than English – 88% female caregivers |
– Disease severity – Service utilization |
– | – | – | ✓ | ✓ | – Disease severity, per capita income, family history associated with service utilization – Race/ethnicity and level of acculturation not significantly associated with service utilization |
– | – | – | – | ✓ | ✓ | ✓ |
Brown, et al (2018)8 | Retrospective cohort analysis (III, B) | – Patients who died from chronic illness (22,068) | – 82% White, 6% Asian, 6% Black, 2% Hispanic, 2% Native American – 57% Male, 43% Female – 27% had a 4-year college education or higher |
*Within the last 30 days of life: – Intensive care unit admission – Use of mechanical ventilation – Receipt of CPR |
– | – | – | ✓ | ✓ | – Race/ethnicity, SES, and lower income significantly associated with all 3 types of high-intensity care in last 30 days of life – Lower levels of education significantly associated with mechanical ventilation and ICU care in last 30 days of life – Racial/ethnic minority groups more likely to be admitted to ICU and receive mechanical ventilation than white non-Hispanics |
– | – | ✓ | ✓ | ✓ | – | – |
Gidwani-Marszowski, et al (2018)20 | Retrospective cohort analysis (III, C) | – Veteran patients who died of solid tumors (87,251) | – 87% White – 99% Male – 52% Medicare-reliant, 46% VA-reliant |
*Within the last 30 days of life: – Quality of care – Chemotherapy use – Intensive care unit/hospital admission or death in the hospital – Number of days in the hospital |
– | – | ✓ | ✓ | ✓ | – Medicare-reliant patients had more intensive (lower quality) EOL care than VA-reliant patients in terms of chemotherapy, hospital and ICU admissions, number of days in the hospital and death in the hospital – Race, urbanicity associated with more ED visits and hospitalizations |
– | – | ✓ | – | ✓ | – | ✓ |
Givens, et al (2010)21 | Retrospective cohort analysis (III, B) | Heart failure patients (98,258) | – 88% White, 9% Black, 1% Hispanic – 39% Male – 76% had median income <$45,000 |
– Hospice entry | – | ✓ | ✓ | – | – | – Blacks/Hispanics used hospice less for any diagnosis than Whites after adjusting for income, illness severity, and urbanicity – For heart failure, Hispanics had longest median duration (19 days), followed by Blacks (14 days), and Whites (13 days) – Comorbidity burden, advanced age, ED visits/hospitalizations, and local hospice density significantly associated with hospice utilization |
✓ | – | ✓ | – | – | ✓ | ✓ |
Haines, et al (2018)22 | Retrospective analysis (III, B) | Adult trauma patients (2,966,444) | *Among those discharged to hospice: – 89% White – 52% Female – 71% Medicare reliant |
– Disposition to hospice – Hospital LOS |
– | ✓ | – | ✓ | ✓ | – Blacks, Hispanics, and Asians significantly less likely to receive hospice than Whites – Age, gender, and type of disease significantly associated with disposition to hospice – Medicare patients transferred to hospice sooner than uninsured patients who had longer hospital LOS |
✓ | ✓ | ✓ | – | ✓ | ✓ | – |
Hoerger, et al (2019)23 | Descriptive (III, B) | States (50) | *At the state-level, on average: – 69% White – 50.6% Female – $56,406 Median income |
– PC access – Personality (Openness) |
– | ✓ | ✓ | ✓ | – | – Greater PC access in states where residents were older, White, had higher SES, and were politically liberal – States with higher levels of openness had greater PC access |
✓ | – | ✓ | – | ✓ | – | ✓ |
Hui, et al (2012)24 | Retrospective case-control (III, B) | Patients who died of advanced cancer (816) | *Of patients who had a PC referral: – 58% White, 22% Black, 14% Hispanic, 5% Asian, 1% Other – 53% Female – 64% had a college education or higher |
– PC consults and referrals | – | ✓ | ✓ | – | ✓ | – Patients with PC consults were younger, female, and more likely to be married – Patients with GYN, breast, and GI cancers were more likely to have PC access – Majority of patients had an average of 20 medical team encounters prior to PC referral and/or did not see PC at all before death |
✓ | ✓ | – | – | – | ✓ | ✓ |
Kumar, et al (2012)25 | Cross-sectional (III, B) | Cancer patients (313) | – 77% White, 18% Black, 2% Asian, 2% Hispanic, 1% Native American – 72% had a college education or higher |
– Use of SPCS (counseling, cancer support group, cancer rehabilitation, and PC consult) | – | ✓ | – | ✓ | – | – Most commonly used SPCS was counseling (30%); least common were PC consultation (8%) and cancer rehabilitation (4%) – SPCS users were more likely to be female and have a higher level of education – Type of cancer was significantly associated with SPCS use |
– | ✓ | – | ✓ | – | ✓ | – |
Lee, et al (2013)26 | Descriptive (III, C) | Pancreatic cancer patients (1,008) | – 15% Black – 65.3% Male |
– Surgery and adjuvant therapy use for locoregional disease – Chemotherapy use for distant disease |
– | – | – | – | ✓ | – Race was not significantly associated with surgical resection, adjuvant therapy/chemotherapy use – Severity of disease was significantly associated with surgical outcomes |
– | – | – | – | – | ✓ | – |
Okafor, et al (2016)27 | Retrospective analysis (III, B) | Patients with metastatic malignancies of the colon (217,055) | *Among White patients: – 48% Female – 58% Medicare reliant; 6% Medicaid reliant *Among Black patients: – 40% Female – 54% Medicare reliant; 21% Medicaid reliant |
– Colorectal stent utilization – Hospital LOS |
– | – | – | ✓ | – | – Medicare was the most common payer for the procedures across all races; Blacks incurred the highest average total charges ($156,876) – Higher SES was significantly associated with greater utilization – Lower SES was significantly associated with greater hospital LOS and charges |
– | – | ✓ | – | ✓ | – | ✓ |
Sharma, et al (2015)28 | Retrospective analysis (III, B) | Metastatic cancer patients (6,288) | – 69% White, 19% Black, 6% Hispanic, 7% Other *Of patients reliant on Medicaid: – 20% Hispanic, 17% Black, 3% White |
– Receipt of inpatient PC consultation | – | – | ✓ | – | ✓ | – Black/lower SES patients were significantly more likely than Whites to have an inpatient PC consult and to be referred to hospice – Advanced illness and increased frequency of hospitalizations were significantly associated with greater odds of having an inpatient PC consult |
– | – | ✓ | – | ✓ | ✓ | – |
Silveira, et al (2011)29 | Observational (III, B) | U.S. counties (3,140) | *At the county level, on average: – 9% Black, 6% Hispanic – 51% had a high-school education |
– Hospice program availability | – | – | ✓ | ✓ | – | – Hospice availability was significantly associated with urbanicity – Population size, median household income, race, and certificate of need – positively predicted hospice count per county – Area, ethnicity, education, and age negatively predicted hospice count per county |
✓ | – | ✓ | ✓ | ✓ | – | ✓ |
Singh, et al (2017)30 | Retrospective observational (III, B) | Stroke patients (395,411) | – 69% White – 52% Female *Of patients who had a PC encounter – 7% White, 5% Hispanic, 4% Black |
– PC encounter – Death during hospitalization |
– | ✓ | ✓ | – | ✓ | – Age, sex, and race were significantly associated with PC use – PC encounters were significantly associated with large, urban teaching, and non-profit hospitals |
✓ | ✓ | ✓ | – | – | – | ✓ |
Stewart, et al (2016)31 | Descriptive (III, B) | Hepatocellular cancer patients (33,270) | – 38% White, 26% Hispanic, 8% Chinese, 8% Black, 6% Vietnamese, 4% Filipino, 3% Korean, 1% American Indian/Alaska Native | – Receipt of surgical treatment – Cause-specific and all-cause mortality |
– | ✓ | – | ✓ | ✓ | – Age, race, gender, and SES were significantly associated with odds of receiving surgical treatment – Lower mortality was significantly associated with younger age, female gender, earlier stage disease, higher SES, and later time period of diagnosis |
✓ | ✓ | ✓ | – | ✓ | ✓ | – |
Watanabe-Galloway, et al (2014)32 | Descriptive (III, B) | Patients who died from colorectal cancer (34,975) | *Non-Hispanic White: – 91% of rural beneficiaries, 91% of micropolitan beneficiaries, and 83% of metropolitan beneficiaries *Female sex: – 52% of rural beneficiaries, 51% of micropolitan beneficiaries, and 53% of metropolitan beneficiaries |
– ER visits, inpatient hospital admissions, and number of ICU days in the last 3 months of life – Proportion of people who used hospice – Proportion of people who enrolled in hospice less than 3 days before death, among those who ever used hospice |
– | ✓ | ✓ | ✓ | ✓ | – Older age and female sex were significantly associated with fewer ER visits and hospitalizations, greater hospice use – Race/ethnicity, lower SES, and rurality were significantly associated with less hospice use, greater use of ED, inpatient care, and ICU in last 3 months of life |
✓ | ✓ | ✓ | – | ✓ | – | ✓ |
Worster, et al (2018)33 | Retrospective analysis (III, C) | Patients referred to PC services (3,207) | – 65% White, 27% Black, 3% Hispanic, 3% Asian/Pacific Islander, 1% Other – 52% Female |
– Time to inpatient PC consult – Disposition to hospice – Hospital LOS |
– | ✓ | – | – | ✓ | – Race was not a significant – predictor of time to PC consult, hospice enrollment, or increased hospital LOS |
– | – | – | – | – | ✓ | – |
Qualitative Studies | |||||||||||||||||
Isaacson, et al (2015)34 | Qualitative (III, B) | Health Care Providers (7) | – 57% Native American/Alaska Indian, 43% non-Native | – Perspectives on PC specific to Native Americans – Availability of PC on reservations |
✓ | ✓ | ✓ | ✓ | – | – Cited lack of funding, and infrastructure as main challenges for implementing PC widely – Both Native and non-Native providers noted misconceptions regarding PC/hospice as a barrier to patient engagement |
– | – | – | – | – | – | ✓ |
Johnston, et al (2019)35 | Qualitative (III, B) | Multiple stakeholders (Patients, caregivers, providers, CHWs) (24) | – 13% Black patients – 4% caregivers – 46% providers – 13% CHWs |
– Views and attitudes toward patient navigation and PC use for Blacks with advanced malignancies | ✓ | ✓ | – | – | ✓ | – Stated CHWs help bridge barriers in PC to enhance patient-centered care in a culturally sensitive manner – Inconsistent messaging and branding is a significant barrier to PC use |
– | – | ✓ | – | – | – | ✓ |
Kavalieratos, et al (2014)36 | Qualitative (III, B) | Primary care, cardiology, and palliative care providers (18) | – 67% Physicians – 33% Non-physician providers |
– Perceived factors that impede PC referral and access for heart failure patients | – | – | ✓ | – | – | – Unpredictable trajectory of heart failure can prevent patients from seeking out PC services – Providers had limited knowledge regarding PC and its use in heart failure |
– | – | – | ✓ | – | ✓ | – |
Mixed Methods Study | |||||||||||||||||
Periyakoil, et al (2016)37 | Mixed- methods (III, A) | Patients and families (387) | – 37% White, 51% Asian American, 12% Black – 67% Female – 64% had a college education or higher |
– Barriers to quality EOL care | ✓ | ✓ | – | ✓ | – | – 61% reported barriers to EOL care for persons in their culture/ethnicity – Common barriers noted were finances, communication, and beliefs – Patients with no formal education found financial challenges most difficult, followed by communication barriers between doctors and patients |
✓ | ✓ | – | ✓ | ✓ | – | ✓ |
CPR = Cardiopulmonary resuscitation; PC = Palliative Care; LOS = Length of stay; CHW = Community health worker; EOL = End of life; SPCS = Supportive and palliative care services.