Sage Journals: Discover world-class research

Abstract

Purpose

To identify disparities in access, utilization, and quality of end-of-life (EOL) and palliative care services for American Indians and Alaska Natives (AIAN) with cancer in the US.

Methods

Systematic searches were conducted in PubMed/MEDLINE, Embase, and Scopus. English-language original research studies reporting any quantitative estimates of measures of care quality or utilization for EOL and palliative care for AIAN individuals with cancer compared to other races were included (2014-2025). Screening and data extraction were conducted by two independent reviewers and discrepancies were resolved through consensus. Findings were synthesized through iterative team discussions.

Results

Of 1693 unique records, 153 underwent full-text review, and 22 met inclusion criteria. Considerable heterogeneities were observed in EOL care outcomes and covariates included in multivariable regression models assessing disparities: Compared to White individuals, AIAN individuals with cancer had significantly lower in-home or hospice and higher medical facility deaths (9/11 studies); higher acute care use (3/4 studies); lower hospice use (2/4 studies); lower anxiolytic medication use (1/1 study); and higher receipt of any palliative treatment (3/6 studies); but no differences in late hospice initiation (0/3 studies); or aggressive treatment near the EOL period (0/6 studies).

Conclusions

AIAN individuals with cancer appear more likely to experience a medicalized death. Mechanisms underlying these disparities remain poorly understood. Future studies should provide greater clarity in analytical methods to improve interpretability of disparities measures, use more consistent measures of EOL care quality, explore within-AIAN variation such as regional, tribal, and rural–urban differences, as well as cultural implications for the delivery of appropriate EOL care.

Keywords

race and ethnicity healthcare disparities hospice palliative care symptom management native Americans AI/AN

Introduction

Throughout history, care for the dying has often involved ceremonies, music, storytelling, and rituals, aimed at helping the person and their loved ones feel more comfortable making a natural life transition.¹ End-of-life (EOL) care, defined as the medical care and support received at the time surrounding death,² is a unique experience for each individual, where the goal is providing compassionate, person-centered, and family-oriented care to reduce suffering, provide comfort, and maintain or improve quality of life.³ For individuals with serious illness such as cancer, appropriate EOL care, including hospice care and other palliative care services, improves quality of life for the patient and caregivers,^4-6 and reduces the costs associated with excessive medicalization, prolonged hospitalization, and receipt of futile aggressive treatments.^7,8 Despite these benefits, many individuals with cancer in the US continue to experience suboptimal and often value-discordant EOL care,⁹ characterized by excessive medicalization, receipt of aggressive treatments, and underuse of symptom management, palliative care, and hospice services, leading to a higher likelihood of dying in medical facilities. These patterns are especially pronounced among minoritized racial and ethnic groups.^10-18

From the 2020 Census, about 9.7 million people (∼3% of the US population) identified as American Indian and Alaska Native (AIAN).¹⁹ AIAN people are highly diverse in culture, history, and geography, representing 574 tribes and people groups recognized by the US federal government and more than 200 not recognized by the US government that may be recognized by the state in which their tribal homelands are located. Persistent health disparities, i.e. unjustified and preventable differences in health outcomes,²⁰ have been widely documented for AIAN populations.²¹ These disparities do not merely reflect individual preferences but are rooted in longstanding structural inequities in socioeconomic status, healthcare access, cultural communication barriers, historical trauma, and medical mistrust.^22-25 For instance, compared with about 10% of non-Hispanic Whites in the US, about 22% of AIANs experience poverty with rates exceeding 60% in some tribal areas and reservations.²⁶ AIAN individuals are also more likely to be uninsured (approximately 20%) and reside in rural areas.²⁶ Parallel to the socioeconomic differences, AIAN individuals with cancer often experience greater symptom burden across the illness trajectory and higher mortality rates.²⁷ Limited EOL care offered by tribal organizations may contribute to these patterns by leaving patients and families to seek such care outside, where culturally sensitive EOL care is less available.²⁸ This lack of proper EOL care can lead to more pain, financial hardship, and caregiver burden for AIAN individuals and their loved ones during an especially vulnerable period.

Healthcare disparities are not immutable. In addition to efforts addressing disparities in disease prevention, treatment, and life expectancy, policy makers and clinicians share a responsibility to work towards eliminating disparities in the quality of care that individuals receive near their end of life, as ensuring a “good death” for all is a fundamental goal of the healthcare systems.²⁸ We aimed to review the existing evidence on disparities in EOL care access and quality for AIAN populations with cancer in the US. To better understand and address EOL care in this vulnerable population, we provide policy, practice, and research recommendations based on the results of our review.

Methods

The protocol for this scoping review was developed according to Arksey and O’Malley’s framework.²⁹ We decided to conduct a scoping review to characterize the range of existing evidence, clarify key concepts, examine emerging research areas from various study designs and outcomes, map key findings, and identify knowledge gaps to guide future research.³⁰ This paper follows the Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for scoping reviews. (PRISMA-ScR).³¹

Databases and Search Strategies

PubMed/MEDLINE, Embase, and Scopus were systematically searched for any peer-reviewed studies published through February 2025, with no restrictions on the earliest year of publication. A health sciences librarian helped develop and refine the search strategies (available in Supplementary Materials). All retrieved records were uploaded to Covidence (Veritas Health Innovation, Melbourne, Australia) for screening.

Study Selection and Inclusion Criteria

After removing duplicates in Covidence, records were reviewed through a two-step process: (i) screening titles and abstracts for relevance, followed by (ii) full-text review of the selected records to evaluate eligibility based on predetermined criteria. In both steps, two authors independently reviewed and voted for inclusion of the record. Discrepancies were resolved through regular consensus meetings.

Studies were included if they met the following criteria: (i) focused on AIAN individuals with cancer; (ii) studied outcomes relevant to access, utilization, or quality of EOL care or palliative care near EOL; (iii) provided quantitative results for AIAN individuals (i.e., not aggregated with other racial/ethnic groups) compared to other races; and (iv) published as full-text original research in English, with no restrictions on publication year (the earliest included study was published in 2014). Original qualitative research studies are reported in a separate paper to allow for more in-depth analysis. Conference abstracts, reviews, commentaries, book chapters, protocols, and editorials were excluded.

Data Extraction

Data abstraction was conducted as per a pre-established form by two independent investigators and discrepancies were resolved by a third reviewer. Quality appraisal of the included studies is not recommended in the context of scoping reviews and was not conducted.²⁹

Conceptual Framework and Evidence Synthesis

Consistent with a socioecological view, access to, utilization, and quality of healthcare services are influenced by an array of complex and interconnected factors at multiple levels (i.e. individual, interpersonal, organizational, community, and policy levels).³² Understanding the influence of these multilevel factors is essential for developing targeted interventions to reduce disparities. Ecological frameworks have been frequently used in conceptualizing and reviewing evidence on health-related disparities.^33-36 Moreover, in 2019, the National Institute on Minority Health and Health Disparities (NIMHD) proposed a comprehensive framework presenting the etiological factors as well as intervention targets to reduce health disparities for populations with health disparities including minoritized racial and ethnic groups.³⁷ Data extracted from the included studies were synthesized through iterative consensus team meetings. The team used the socioecological and NIMHD framework concepts to synthesize the empirical evidence on disparities in access to, utilization, and quality of EOL and palliative care. These concepts also identified gaps in the evidence and priorities for future research, practice, and policy interventions to address the disparities and improve the EOL care quality for AIAN populations with cancer.

Results

Study Characteristics

Figure 1 shows the PRISMA diagram for study inclusion. After removing duplicates, 1693 unique records were identified. Of these, 153 articles were selected for full-text review, and 22 met the inclusion criteria for final analysis.^38-59 The included studies were published from 2014 to 2025, with the vast majority (20/22) published since 2021. Reported AIAN sample sizes varied substantially from 4³⁸ to 14,359.⁵⁴ Only two studies focused specifically on disparities in AIAN populations,^42,43 whereas the remaining studies reported AIAN estimates alongside those for other racial groups. Table 1 lists the studies included and their characteristics.

Figure 1.

Study identification and inclusion diagram

Table 1.

Characteristics of the Included Studies

Author, Year	Location/Dataset	Subjects	Sample size	Factors controlled for*	Outcome categories
Chintapalli et al. 2025³⁸	Single institution electronic health records, California 2004-2024	Patients with spinal metastatic disease	AIAN: 4 White: 453 Total: 851	Individual: Age, sex, insurance, type of surgery, tumor location, comorbidities	Palliative care utilization
Nadeem et al. 2025³⁹	CDC WONDER 2003-2020	Decedents with IHCC	Total: 101,631 Sample by race not reported	Unadjusted estimates only	Place of death
Ranganathan et al. 2025⁴⁰	National Cancer Database 2004-2018	Patients with metastatic colon cancer	Total: 179,573 White: 145,891 AIAN: 587	Individual: Age, sex, insurance, comorbidities, dx year; Organizational: Facility type; Community: Zip code-level income and education	Palliative care utilization
Kohli et al, 2025⁴¹	National Cancer Database 2004-2021	Patients with NSCLC who died within 30 days of dx	AIAN: 349 White: 102,130 Total: 119,046	Individual: Age, sex, insurance, comorbidities, dx year; Organizational: Facility type; Community: Zip code-level income and education	Aggressive treatment
Jackson et al. 2025⁴²	North Carolina Central Cancer Registry merged with insurance claims data 2003-2020	Decedents with lung cancer	AIAN: 594 White: 49,296	Individual: dx age, sex, insurance, stage at dx, histology, dx year Community: Rurality, distance to care facilities	Place of death, Aggressive treatment, Acute care utilization, hospice utilization, Late hospice initiation
Emerson et al. 2025⁴³	North Carolina Central Cancer Registry merged with insurance claims data 2003-2018	Decedents with cancer	AIAN: 1769 White: 161,516	Individual: Sex, dx age, insurance, histology, stage at dx, time from cancer dx to death; Community: Rurality, distance to care facilities	Place of death, Aggressive treatment, Acute care utilization, hospice utilization, Late hospice initiation
Jain et al. 2024⁴⁴	CDC WONDER 2003-2020	Pediatric decedents with cancer	AIAN: 1.0% Total: 36,889	Individual: Age, sex	Place of death
Fereydooni et al. 2024⁴⁵	National Cancer Database 2004-2019	Patients with stage III or IV head and neck cancer	AIAN: 685 White: 147,808 Total: 179,909	Individual: Age, sex, education, payer, household income, comorbidities, cancer subsite and stage; Organizational: Facility type; Community: Rurality, region, distance to care facilities	Aggressive treatment, palliative care utilization
Rodriguez et al. 2024⁴⁶	California cancer registry merged with California Office of Statewide Health Planning and Development patient discharge and emergency department data 2005-2018	Decedents with lung cancer	AIAN: 1045 White: 146,872	Individual: Age at death, sex, income, insurance, cancer histology and stage, comortbidities; Organizational: Facility type; Community: Rurality, census-based SES index	Place of death, Aggressive treatment, Acute care utilization
Freeman et al. 2024⁴⁷	National Cancer Database 2004-2020	Decedents with metastatic breast cancer	AIAN: 453 White: 107,768	Individual: dx age, sex, insurance, income, comorbidities, histology, molecular subtype, tumor grade, dx year; Organizational: Facility type; Community: Rurality	Palliative care utilization
Mathew et al. 2024⁴⁸	CDC WONDER 2003-2019	Decedents with ovarian cancer	Total: 237,069 White and AIAN not reported	Individual: Age, marital status, education	Place of death
Sonal et al. 2024⁴⁹	CDC WONDER 2003-2019	Decedents with colorectal cancer	AIAN: 4864 White: 711,628	Individual: Age at death, sex, marital status, education, number of causes of death (as proxy for illness severity)	Place of death
Allen et al. 2023⁵⁰	SEER Medicare 2005-2017	Decedents with pancreatic cancer	AIAN: 211 White: 53,893	Unadjusted estimates only	Supportive medication use
Gold et al. 2023⁵¹	CDC WONDER 1999-2020	Decedents with testicular cancer	AIAN: 84 White: 7643	Individual: Age, marital status, education	Place of death
Bajaj et al. 2023⁵²	CDC WONDER 2003-2019	Decedents with esophageal cancer	Total: 237,063 White: 210,132 AIAN: 1154	Individual: Age, sex, marital status, education, number of causes of death (proxy for illness severity)	Place of death
Islam et al. 2022⁵³	National Cancer Database 2004-2016	Adults with advanced NSCLC	AIAN: 2343 White: 688,189	Individual: Age, months from cancer dx to last contact or death, insurance, income, comorbidities, dx year, cancer stage; Organizational: Facility type; Community: Region	Palliative care utilization
Hussaini et al. 2022⁵⁴	CDC WONDER 2003-2019	Decedents with GI cancers	AIAN: 14,359 White: 1,871,208	Individual: year of death	Place of death
Shenker et al. 2022⁵⁵	CDC WONDER 2003-2016	Decedents with solid tumors	Total: 7,255,693 AIAN: 0.5% of total	Individual: Age, sex, education, marital status, year	Place of death
Khullar et al. 2022⁵⁶	National Cancer Database 2004-2015	Decedents with ES-SCLC >40 years who survived at least a month after dx	Total: 83,175 AIAN: NR	Individual: Age, sex, dx year, comorbidities, insurance; Organizational: Facility type; Community: distance between home and facility, region, zipcode-level income and education	Palliative care utilization
Deeb et al. 2021⁵⁷	Healthcare Cost and Utilization Project 2010-2017	Adults with metastatic cancer who died in hospital	Total: 21,335 White: 14,066 AIAN: 101	Individual: Age, sex, insurance, year; Organizational: hospital location and teaching status; Community: Census region	Aggressive treatment, Acute care utilization
Shiovitz 2015⁵⁸	SEER Medicare 2001-2007	Older adults (³65) with metastatic cancers	White: 75,871 AIAN: 388	Individual: dx year and age, sex, , comorbidities, marital status; Community: Region, zip code-level income, type of residence	Hospice utilization, Late hospice initiation
Guadagnolo 2014⁵⁹	SEER Medicare 2003-2009	Decedents with breast, cervix, colorectal, kidney, lung, pancreatic, prostate or stomach cancer	White: 181,316 AIAN: 690	Individual: Age, year, sex, marital status, cancer type, comorbidities, education; Community: Region, rurality	Hospice utilization

*In addition to race/ethnicity.

AIAN: American Indian and Alaska Native, AOR: Adjusted Odds Ratio, ARR: Absolute Risk Reduction, Dx: Diagnosis, ES-SCLC: Extensive-Stage Small Cell Lung Cancer, HR: Hazard Ratio, IHCC: Intrahepatic Cholangiocarcinoma, NCI: National Cancer Institute, NR: Not Reported, NSCLC: Non-Small Cell Lung Cancer, SCLC: Small Cell Lung Cancer, SES: Socioeconomic Status.

There was substantial heterogeneity across studies in terms of the studied cancer types, EOL care outcomes types, definitions and time frames, the effect measures used and their reported estimates, as well as the covariates adjusted for in multivariable models to evaluate disparities (Tables 1 and 2). Various secondary data sources were used to examine EOL care outcomes: 18 studies used national data, including the Healthcare Cost and Utilization Project (n = 1),⁵⁷ SEER Medicare (n = 3),^50,58,59 National Cancer Database (n = 6),^{40,41,45,47,53,56} and CDC WONDER (n = 8)^{39,44,48,49,51,52,54,55}; Three studies used state-level data from cancer registries in North Carolina (n = 2)^42,43 and California (n = 1)⁴⁶; One study used electronic health records from a large institution in California (n = 1).³⁸ White individuals served as the reference group for analyzing disparities across all studies. Two studies only presented unadjusted outcome estimates for the AIAN compared to the White reference group,^39,50 while 20 evaluated disparities using multivariable logistic regressions adjusting for covariates in multiple levels: individual level (n = 8), individual and community levels (n = 4), individual and organizational levels (n = 1), or individual, community, and organizational levels (n = 7).

Table 2.

Summary of Evidence on AIAN/White Disparities Across End-Of-Life Care Outcome Categories

Outcome category	Study (cancer type)	Outcome definition and timeframe	Effect measure and estimates (95% CI)^a	AIAN/White differences
Palliative care utilization	Chintapalli et al. 2025³⁸ (spinal metastatic disease)	Receipt of inpatient palliative care consultation	AOR 1.16 (0.12-11.58)	None
	Ranganathan et al. 2025⁴⁰ (metastatic colon cancer)	Receipt of any palliative care during cancer treatment^b	AOR 1.14 (0.90-1.44)	None
	Freeman et al. 2024⁴⁷ (metastatic breast cancer)	Receipt of any palliative care during cancer treatment^b	AOR 1.11 (0.80-1.53)	None
	Fereydooni et al. 2024⁴⁵ (stage III and IV head and neck cancer)	Receipt of any palliative care during cancer treatment^b	AOR 1.74 (1.27, 2.33)	AIAN more likely to receive palliative care, but no difference in type of palliative care
		Type of palliative care received during the last 6 months of life (interventional: chemotherapy, radiotherapy, and surgery; noninterventional: pain management)	AOR 1.20 (0.55, 2.99)
	Islam et al. 2022⁵³ (advanced NSCLC)	Receipt of any palliative care during cancer treatment^b	AOR 1.18 (1.06-1.31)	AIAN more likely to receive palliative care
	Khullar et al. 2022⁵⁶ (ES-SCLC)	Receipt of any palliative care during cancer treatment^b	HR (for not receiving) 0.92 (0.84-0.99)	AIAN more likely to receive palliative care
Aggressive treatment	Deeb et al. 2021⁵⁷ (metastatic cancers)	Systemic therapy during terminal hospitalization	AOR 1.23 (0.49-3.09)	None
	Deeb et al. 2021⁵⁷ (metastatic cancers)	Ventilation during terminal hospitalization	AOR 1.05 (0.59-1.85)	None
	Jackson et al. 2025⁴² (lung cancer)	IV chemotherapy during the last 30 days of life	ARR 1.13 (0.93-1.38)	None
	Emerson et al. 2025⁴³ (any cancer)	IV chemotherapy during the last 30 days of life	ARR 0.99 (0.85-1.14)	None
	Rodriguez et al. 2024⁴⁶ (lung cancer)	Intubabtion during the last 14 days of life	AOR 1.12 (0.88-1.42)	None
		CPR during the last 14 days of life	AOR 0.98 (0.62-1.55)	None
		Hemodialysis during the last 14 days of life	AOR 0.34 (0.11-1.06)	None
	Fereydooni et al. 2024⁴⁵ (stage III and IV head and neck cancer)	Curative treatment refusal during the last 6 months of life	AOR 0.98 (0.70, 1.33)	None
	Kohli et al. 2025⁴¹ (NSCLC)	Chemotherapy during the last 30 days of life	AOR 0.88 (0.51-1.53)	None
Use of supportive medications	Allen et al. 2023⁵⁰ (pancreatic cancer)	≥1 claims for outpatient opioid and non-opioid analgesics, muscle relaxants, antidepressants, antipsychotics, and anxiolytics in the last 12 months of life	Percentage of anxiolytics use (16.1% AIAN vs 22.3% white, P < 0.05)	Less anxiolytics use; differences in other medication groups not statistically significant findings
Hospice utilization	Emerson et al. 2025⁴³ (any cancer)	Hospice use during the last 30 days of life	ARR 1.03 (0.99-1.08)	None; within-AIAN variation by insurance and geography
	Jackson et al. 2025⁴² (lung cancer)	Hospice use during the last 30 days of life	ARR 0.97 (0.90-1.04)	None; no rural-urban difference within AIAN
	Shiovitz et al. 2015⁵⁸ (multiple cancers)	Hospice use during the last 2 years of life	AOR 0.78 (0.61-0.99)	AIAN less likely to receive hospice care
	Guadagnolo et al. 2014⁵⁹ (multiple cancers)	Hospice use during the last 6 months of life	AOR 0.74 (0.64-0.86)	AIAN less likely to receive hospice care
Place of death	Emerson et al. 2025⁴³ (any cancer)	Hospital (vs other)	ARR 0.99 (0.91-1.09)	No significant difference; significant interaction by rurality within AIAN
	Jackson et al. 2025⁴² (lung cancer)	Hospital (vs other)	ARR 1.22 (1.06-1.40)	AIAN more likely to die in hospital
	Nadeem et al. 2025³⁹ (intrahepatic cholangiocarcinoma)	Hospital (vs other)	RR 1.33 (NR)	AIAN more likely to die in hospital and less likely to die in hospice, home, or nursing home
		Hospice (vs other)	RR 0.72 (NR)
		Home (vs other)	RR 0.93 (NR)
		Nursing home (vs other)	RR 0.80 (NR)
	Jain et al. 2024⁴⁴ (pediatric cancers)	Hospital (vs other)	AOR 1.11 (0.91-1.36)	AIAN more likely to die in outpatient facility or ED, nursing facility or hospice, and less likely to die at home
		Hospice (vs other)	AOR 1.86 (1.08-3.20)
		Home (vs other)	AOR 0.64 (0.52-0.79)
		Nursing facility (vs other)	AOR 3.69 (1.61-8.45)
	Mathew et al. 2024⁴⁸ (multiple cancers)	Hospice (vs other)	AOR 0.57 (0.45-0.72)	AIAN less likely to die in hospice
		Hospital (vs other)	AOR 1.47 (1.30-1.66)	AIAN more likely to die in hospital
		Home (vs other)	AOR 0.98 (0.87-1.10)	No significant difference
		Nursing facility (vs other)	AOR 0.83 (0.69-1.01)	No significant difference
		OMF/ED (vs other)	AOR 0.86 (0.68-1.08)	No significant difference
	Rodriguez et al. 2024⁴⁶ (lung cancer)	Hospital/ED death (vs other)	AOR 1.03 (0.85-1.24)	No significant difference
	Shenker et al. 2022⁵⁵ (solid tumors)	Home or hospice (vs medical facility)	AOR 0.85 (0.82-0.87)	AIAN less likely to die at home or in hospice
	Gold et al. 2023⁵¹ (testicular cancer)	Home or hospice (vs medical facility)	AOR 0.43 (0.25-0.70)	AIAN less likely to die at home or in hospice
	Sonal et al. 2024⁴⁹ (colorectal cancer)	Home (vs hospital)	AOR 0.90 [0.84-0.96]	AIAN less likely to die in non-hospital settings
		Hospice (vs Hospital)	AOR 0.51 [0.45-0.59]
		Nursing home (vs hospital)	AOR 0.73 (0.66-0.80)
		OMF/ED (vs hospital)	AOR 0.86 (0.76-0.97)
	Bajaj et al. 2023⁵² (esophageal cancer)	Home (vs hospital)	AOR 0.88 (0.76-1.00)	AIAN less likely to die in hospice; no difference in nursing homes
		Hospice (vs hospital)	AOR 0.58 (0.45-0.75)
		Nursing home (vs hospital)	AOR 1.02 (0.85-1.24)
		OMF/ED (vs hospital)	AOR 0.91 (0.72-1.16)
	Hussaini et al. 2022⁵⁴ (gastrointestinal cancers)	Home (vs medical facility)	AOR 0.68 (NR)	AIAN less likely to die at home, hospice, or nursing homes
		Hospice (vs medical facility)	AOR 0.40 (NR)
		Nursing home (vs medical facility)	AOR 0.57 (NR)
Late hospice initiation	Emerson et al. 2025⁴³ (any cancer)	Hospice initiation within the last 3 days of life	ARR 1.02 (0.89-1.17)	None
	Jackson et al. 2025⁴² (lung cancer)	Hospice initiation in the last 3 days of life	ARR 1.02 (0.83-1.27)	None
	Shiovitz et al. 2015⁵⁸ (older adults with metastatic cancers)	Hospice initiation in the last 7 days of life	AOR 0.82 (0.56-1.19)	None
Acute care utilization	Emerson et al. 2025⁴³ (any cancer)	Hospital admission in the last 30 days of life	ARR 1.10 (1.06-1.15)	AIAN more likely to use acute care
		ICU admission in the last 30 days of life	ARR 1.21 (1.11-1.32)
		>1 ED visits in the last 30 days of life	ARR 1.31 (1.20-1.44)
	Jackson et al. 2025⁴² (lung cancer)	Hospital admission in the last 30 days of life	ARR 1.14 (1.07-1.22)	AIAN more likely to use acute care
		ICU admission in the last 30 days of life	ARR 1.24 (1.08-1.42)
		>1 ED visits in the last 30 days of life	ARR 1.27 (1.09-1.47)
	Rodriguez et al. 2024⁴⁶ (lung cancer)	Hospital admission in the last 14 days of life	AOR 1.15 (0.86-1.55)	AIAN more likely to visit ED
		ICU admission in the last 14 days of life	AOR 1.12 (0.88-1.42)
		Any ED visits in the last 14 days of life	AOR 1.58 (1.47-1.69)
	Deeb et al. 2021⁵⁷ (metastatic cancers, in-hospital deaths)	Hospital admission from ED	AOR 0.73 (0.47-1.13)	None

AIAN: American Indian and Alaska Native, AOR: Adjusted Odds Ratio, ARR: Absolute Risk Reduction, CPR: Cardiopulmonary resuscitation, ED: Emergency Department, HR: Hazard Ratio, ICU: Intensive Care Unit, NR: Not Reported, OMF: Outpatient Medical Facility.

^aReference group is White individuals in all studies.

^bDefined as any non-curative treatment, including surgery, radiotherapy, systemic therapy, and/or pain management at any time during cancer treatment.

Disparities in EOL Care Outcomes

As summarized in Table 1 and Figure 2, the most frequently examined outcomes were place of death (n = 11),^{39,42-44,46,48,49,51,52,54,55} followed by palliative care utilization (n = 6),^{38,40,45,47,53,56} aggressive treatment near the end of life (n = 6),^{41-43,45,46,57} hospice utilization (n = 4),^42,43,58,59 acute care utilization including emergency department (ED), inpatient or intensive care unit (ICU) admissions (n = 4),^42,43,46,57 late hospice initiation (n = 3),^42,43,58 and supportive medication use (n = 1).⁵⁰

Figure 2.

Distribution of studies by outcome

Place of Death

Most studies (9 out of 11) examining place of death among AIAN decedents with cancer reported statistically significant disparities compared to White counterparts. While operational definitions of the outcomes varied (as listed in Table 2), their findings consistently indicated lower likelihood of AIAN individuals with cancer dying in home or hospice facilities, and higher likelihood of hospital or other medical facility deaths. It remains unclear whether home deaths occurred with in-home care, likely reflecting patient preferences and comfort, or represented unmet palliative care needs in settings where such services are less available.

Despite being a key determinant of access to healthcare for the AIAN peoples, only two studies examined the intersection of rurality with AIAN race and their effect on place of death: (i) Emerson et al (2025)⁴³ found no significant difference in the likelihood of in-hospital death between AIAN and White decedents with cancers in North Carolina. However, this null finding masked heterogeneities by rurality. Specifically, rural AIAN decedents had a lower likelihood of in-hospital death compared with rural White decedents, whereas urban AIAN decedents had a higher likelihood of in-hospital death relative to their urban White counterparts. (ii) Jackson et al (2025)⁴² examined in-hospital deaths among decedents with lung cancer and identified significant disparities between rural AIAN and their rural White counterparts, whereas no significant difference was observed in the urban populations.

Palliative Care Utilization

Six studies evaluated disparities in palliative care utilization, defined as the receipt of any non-curative treatment for cancer. As summarized in Table 2, three^45,53,56 reported a higher likelihood of receiving palliative care among AIAN individuals compared to their White counterparts. Fereyodooni et al (2024)⁴⁵ attributed this finding to cultural acceptance of death as a natural life transition among AIAN communities. Additionally, the definition of any palliative care includes symptom management and supportive care, as well as non-curative surgery, radiotherapy, or systemic chemotherapy. This is an important distinction, especially in the context of advanced cancer where treatment intent is non-curative. Palliative care utilization defined as any non-curative treatment may not properly reflect early access to comprehensive and culturally-responsive palliative care services. Fereyodooni et al (2024)⁴⁵ were the only study that further disaggregated palliative care utilization into interventional (surgery, radiotherapy, systemic therapy) vs non-interventional (symptom management) within 6 months of death, and observed no differences between AIAN and White counterparts.

Hospice Utilization

Four studies assessed hospice use outcomes and reported mixed findings. Two recent studies from North Carolina, Emerson et al (2025)⁴³ and Jackson et al (2025)⁴² reported no statistically significant difference in hospice use during the last 6 months of life between AIAN and White decedents. In contrast, two earlier studies using national SEER-Medicare data, Shiovitz et al (2015)⁵⁸ – looking at the last 2 years of life – and Guadagnolo et al (2014)⁵⁹ – looking at the last 6 months of life – found significantly less hospice use in AIAN decedents with cancer compared to their White counterparts.

Exploring potential heterogeneities within the AIAN population in North Carolina, Jackson et al (2025)⁴² reported no significant difference between urban and rural AIAN decedents with lung cancer, while the larger study by Emerson et al (2025)⁴³ found substantial heterogeneity within the AIAN decedents with all cancers, namely higher hospice use among Medicare beneficiaries and those residing farther from major medical centers.

Aggressive Treatment Near the End of Life

Six studies evaluated disparities in the use of intensive medical interventions during the final stages of life, and none found significant disparities between AIAN individuals with cancers and their White counterparts. As shown in Table 2, how aggressive care is operationalized and the timeframes examined varied widely across studies. Although receipt of aggressive care near EOL is often associated with poorer patient and caregiver outcomes,^60-63 population-based studies using large databases are unable to determine whether patients opted for such intensive care.⁶⁴ Moreover, some forms of treatment commonly classified within aggressive care definitions, such as chemotherapy, could have been delivered with palliative intent. Future studies should examine how best to define and measure inappropriate and value-discordant aggressive care near the EOL period that more accurately reflect unmet supportive or palliative care needs, and assess whether, for the AIAN individuals, early integration of culturally-responsive palliative care services may reduce such care.

Acute Care Utilization

Three of four studies evaluating acute care utilization near the EOL period reported significantly higher use in AIAN individuals with cancer compared to their White counterparts. Emerson et al (2025)⁴³ and Jackson et al (2025)⁴² reported higher risks of hospitalization, intensive care unit (ICU) admission, and >1 emergency department (ED) visits in the last 30 days of life, and Rodriguez et al (2024)⁴⁶ identified more ED visits during the last 14 days of life among AIAN individuals with cancer compared to their White counterparts. Deeb et al (2021)⁵⁷ found no statistically significant difference in the likelihood of being admitted to the hospital from the ED among terminally hospitalized individuals with metastatic cancers.

Late Hospice Initiation

Three studies examined disparities in late hospice initiation. Whether defined as initiation within the last 3^42,43 or 7⁵⁸ days of life, no significant disparities were found for AIAN individuals with cancer compared to their White counterparts.

Use of Supportive Medications

Allen et al (2023)⁵⁰ reported fewer anxiolytic medications use in AIAN vs White individuals with pancreatic cancer. There were no significant differences for other supportive medications (opioid and non-opioid analgesics, muscle relaxants, antidepressants, and antipsychotics). In addition to the small AIAN sample size (N = 211 vs 53 893 White), these findings were based on unadjusted analyses without controlling for confounders.

Key Evidence Gaps

Despite growing number of studies in the recent years, our review revealed several important gaps in the existing evidence base on EOL care outcomes for AIAN populations:

1. Limited data availability: AIAN individuals are often aggregated with “other” race categories due to small sample sizes, limiting insights into potential disparities affecting this vulnerable population.

2. Heterogeneity in EOL care outcomes: There was substantial heterogeneity in how EOL care outcomes were defined and measured across studies, including variation in the EOL timerframes, that prevented direct comparison and meta-analysis.

3. Understudied EOL care areas: Evidence is lacking on potential disparities in outcomes such as advanced care planning and access to in-home hospice care for AIAN individuals with cancer. Similarly access to early and culturally-responsive palliative care services for AIAN individuals with cancer remains understudied. AIAN individuals with cancer tend to be at higher risks of acute care use such as emergency department visits and hospitalizations during the EOL period, yet what proportions of these events reflect unmet palliative care needs remain unexplored.

4. Methodological inconsistencies: Adjustment for covariates in multivariable regression models evaluating disparities was inconsistent, limiting interpretation and comparability across studies. Additionally, key drivers of EOL care disparities among AIAN populations remain understudied, preventing the field from moving forward from documenting disparities to identifying modifiable points of intervention aimed at mitigating them.

5. Limited evidence on the intersection of AIAN race and rurality: The only two studies investigating the intersection of rurality and AIAN race reported conflicting results,^42,43 suggesting a gap in the understanding of the complex and context-specific ways in which rurality intersects with AIAN race to influence EOL care outcomes.

6. Limited research on within-AIAN heterogeneities: Limited research exists on variations in EOL care outcomes within AIAN subpopulations such as tribes that are not federally recognized. Only two studies^42,43 explored within-group variations among AIAN populations residing within the state of North Carolina. Emerson et al (2025)⁴³ found that hospice utilization among AIAN decedents varied significantly by geographic location and insurance status, with higher use observed among those covered by Medicare and those living farther from care facilities. Jackson et al (2025)⁴² explored how race and rurality jointly influenced EOL care outcomes and reported differences in in-hospital death risk among AIAN individuals compared to their White counterparts, depending on whether they resided in urban (more likely to die in hospital) or rural (less likely to die in hospital) areas. Future studies should examine geographic disparities by Indian Health Service (IHS) region to better disentangle the within-AIAN heterogeneities. For example, in many Navajo communities, cultural preferences may favor not dying at home, which could affect observed estimates and interpretations of AIAN disparities in place-of-death outcomes.

Discussion

This scoping review aimed to synthesize the literature on disparities in EOL care for AIAN individuals with cancer, as well as gaps in evidence, research priorities, and actionable practice and policy recommendations. We identified 22 studies examining EOL care disparities affecting AIAN individuals with cancer. Studies reported disparities in places of death (9/11 studies) – with AIANs less likely to die in home or hospice and more likely to die in medical facilities compared to their White counterparts. Disparities were also reported in hospice use (2 of 4 studies reporting lower utilization among AIANs), acute care services including hospitalizations, ICU care, or frequent ED visits (3 of 4 studies reporting higher acute care use among AIANs), and supportive medication use (1 of 1 studies reporting lower use among AIANs). Significant differences were reported after accounting for clinical and sociodemographic factors, healthcare setting, community-level socioeconomic status, and rurality, highlighting inequitable EOL care experiences for AIAN individuals with cancer and their families.

AIAN peoples are remarkably diverse, with hundreds of federal, state, and unrecognized tribes, each with distinct cultural identities, geographic contexts, healthcare access, and lived experiences. Over the past centuries, AIAN communities have often experienced greater suffering from modern society’s afflictions, whether it was COVID, smallpox, tuberculosis, or alcoholism.⁶⁵ Persistent disparities exist today across the cancer care continuum, reflecting the compounded impact of historical marginalization, structural racism, socioeconomic disadvantages, and geographic isolation. These structural forces continue to shape access to timely and patient-centered care for AIAN individuals with cancer, including access to high-quality EOL care. Access to hospice and palliative care services at Indian Health Service (IHS) or Urban Indian Health Programs (UIHP) remains limited and most such care is accessed outside through Purchased/Referred Care (PRC).²⁸ Strengthening capacity for providing EOL and palliative care by IHS and UIHP facilities should be a priority. Strategies such as provider training programs, collaborating with local hospice agencies, leveraging telehealth services to better support rural residents, as well as enhancing PRC coverage and navigation for hospice and palliative care should be explored. Tribal health organizations should be supported in developing and sustaining palliative care and hospice programs that are tailored to local Indigenous cultures and practices. Examples of such programs have been successfully operating for the past decades.⁶⁶ Moreover, AIAN individuals from tribes without federal recognition must often rely on external health systems. Partnering with indigenous communities and integrating their voices and knowledge systems into the design and evaluation of EOL and palliative care programs not only ensure that these services align with their values but also shapes our knowledge base on cultural safety of such services for diverse populations.

In addition to access disparities, issues about culturally responsive EOL care for AIAN communities have been raised repeatedly in the past decades.⁶⁶ Patient-clinician cultural communication barriers may contribute to EOL outcome disparities. For example, the literature often notes a common assumption among healthcare providers that AIAN cultures universally view discussions about death as taboo,⁶⁷ which can hinder proper EOL care planning. This taboo exists for only a few tribal nations. Notably, none of the studies in our review examined disparities in goals of care conversations or advance directive completion. Addressing cultural barriers in communication is an essential, intervenable target for improving EOL care experiences and reducing outcomes disparities for minoritized groups, including AIAN patients. Strategies may include increasing AIAN representation within the palliative care workforce to foster trust and cultural alignment in care delivery.^68,69 Strengthening patient navigation services through the integration of community health workers who are more accessible as well as familiar with local values and traditions may help bridge the gap in access to culturally responsive care.⁷⁰ More broadly, in the face of diversity, practicing compassionate presence and cultural humility by clinicians can enhance patient-clinician communication regardless of race or other characteristics.^71,72 Efforts at promoting approaches rooted in cultural humility frameworks for palliative care are critical not only for AIAN communities but for ensuring person-centered care for all individuals facing serious illness.^72,73

It is important to recognize that current EOL-related outcomes have limitations in their ability to capture what matters most to the dying person and their loved ones.⁷⁴ For instance, it is uncertain to what extent evidence of aggressive care near the EOL, as captured from administrative data, reflects the circumstances in which care was delivered and whether it was concordant with the values of patients and their families. Future studies may consider pairing these measures with evidence of early hospice enrollment or advance care planning to assess whether discussions around EOL care decisions occurred. Moreover, despite home being regarded as the preferred place of death for the majority of Americans,⁷⁵ it is hard to generalize this to all AIANs given the geographical and cultural diversity and concerns for forgoing care in the context of historical mistrusts. In addition, the universality of preference for in-home death has been questioned for patients with burdensome EOL needs.⁶⁴ This issue is more pronounced for specific cancer populations. For instance, severe pain in patients with bone cancers and agitated delirium in patients with brain cancer are not unlikely during the days or weeks before death. In such cases, intermittent home hospice visits may not be ideal for symptom management, and inpatient hospice or skilled nursing facilities may be able to offer more comfort to the patient and their families. Recent efforts at developing more standardized, person-centered core outcome sets for EOL care have emphasized recognition and discussion about dying, continued access to care, and addressing symptoms such as pain and anxiety, among outcomes that matter the most to patients and families.⁷⁶ Such studies with a focus on or contribution from AIAN communities are needed.

To address the existing gaps in evidence, future studies on EOL care disparities should prioritize transparency in model specification and reporting, as the interpretation of race coefficients in multivariable models depends on covariates included,⁷⁷ and adjusting for mediator variables in addition to confounders can lead to overadjustment and obscuring disparities.⁷⁸ Examining mediating pathways between AIAN race and EOL outcomes would be helpful to move the field from documenting disparities toward identifying targeted interventions. Potential pathways include socioeconomic factors, geographic location, health literacy, cultural and religious values, communication barriers, and trust in the healthcare systems. For instance, many AIANs live in rural areas, and rural residents, regardless of race, have more limited access to EOL services.⁷⁹ Future research may clarify whether there is an interaction between rurality and AIAN race, for instance due to stronger cultural practices in rural areas. To better unmask within-AIAN heterogeneities, community-specific research is essential and data collection strategies such as oversampling in nationwide surveys are critical to ensure adequate representation to enable research and monitoring progress on eliminating disparities for this vulnerable population.⁸⁰

Truly comprehensive cancer care must address the complex physical, emotional, spiritual, and social needs of individuals, including the universal human need for compassion, connection, and care during difficult life transitions. As such, supporting patients and their loved ones during the EOL period is a core tenet of high-quality cancer care.⁸¹ Behind the statistics on EOL care disparities are persons with cancer and their loved ones who face avoidable pain and suffering, financial distress, and heavy caregiving demands.²⁸ Providing high quality EOL care – one that prioritizes comfort and quality of life, is patient- and family-centered, and eliminates the observed disparities – requires multilevel action across policy, health system, and community levels.⁸²

Limitations

Findings must be interpreted considering several limitations: The terms palliative care, EOL care, and hospice were used interchangeably up until about a decade ago. Although our search strategy included all three terms, some studies may have been missed due to the inconsistent usage of these terms in the literature. AIAN is frequently lumped with the “other” race category due to small sample sizes. Even a systematic review of hospice use in minoritized populations excluded AIAN findings.⁸³ Lastly, disparities research is inherently population based, and we cannot say if population-based outcomes represent the patient and family preferences for all individuals.

Conclusion

This scoping review highlights persistent disparities in EOL and palliative care among AIAN individuals with cancer in the US. AIAN populations remain underrepresented in research including research evaluating health disparities. Across included studies, our findings point to a more medicalized EOL experience for AIAN individuals with cancer compared to their White counterparts, indicated by higher rates of acute care use and death occurring in medical facilities such as hospital or emergency departments rather than in home or hospice facilities. Expanding access to hospice and palliative care services and promoting culturally safe, community-driven research and practice in EOL and palliative care is essential to move beyond documenting disparities to targeting their underlying mechanisms for AIAN communities.

Supplemental Material

Supplemental Material - End-of-Life and Palliative Care Disparities Among American Indians and Alaska Natives with Cancer: A Scoping Review

Supplemental Material for End-of-Life and Palliative Care Disparities Among American Indians and Alaska Natives with Cancer: A Scoping Review by Soroush Fariman, Joel Begay, Linda Burhansstipanov, Marc A. Emerson, Stephanie B. Wheeler, Jennifer Elston Lafata, Ronny A. Bell in American Journal of Hospice and Palliative Medicine®

Footnotes

Acknowledgments

The authors wish to thank Rebecca B Carlson, Health Sciences Librarian at the University of North Carolina at Chapel Hill, for her guidance on the methodology. We also thank Katie E Johnson and Ana I Salas with the Community Outreach and Engagement Program at the Lineberger Comprehensive Cancer Center for their assistance with research coordination. This work was presented in part as a poster at the American Society for Preventive Oncology (ASPO) 49th Annual Meeting, Philadelphia, Pennsylvania, April 6 –8, 2025.

ORCID iD

Soroush Fariman

Ethical Considerations

This study did not involve human participants and therefore did not require ethical approval or informed consent. All data were obtained from published sources.

Author Contributions

Conceptualization: SF, RAB; Data Curation: SF, JB, RAB; Formal Analysis: SF, JB, LB, MAE, JEL, SBW, RAB; Methodology: SF, JB, RAB; Project Administration: SF; Supervision: MAE, SBW, RAB; Writing – Original Draft Preparation: SF; Writing – Review & Editing: SF, JB, LB, MAE, JEL, SBW, RAB; All authors reviewed and approved the final manuscript.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported in part by the Southeastern American Indian Cancer Equity Partnership (SAICEP), the V Foundation for Cancer Research, the University Cancer Research Fund, and the National Cancer Institute (NCI) Center Core Support Grant (5-P30-CA016086) to support the UNC Lineberger Comprehensive Cancer Center.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Supplemental Material

Supplemental material for this article is available online.

References

Kaur

Coe

Rowland

, et al. Enhancing life after cancer in diverse communities. Cancer. 2012;118(21):5366-5373.

Institute of Medicine (US) Committee on Care at the End of Life . Field

Cassel

, eds. Approaching Death: Improving Care at the End of Life. Washington (DC): National Academies Press (US); 1997.

Committee on Approaching Death . Addressing key end of life issues; institute of medicine. In: Dying in America: Improving Quality and Honoring Individual Preferences near the End of Life. Washington (DC): National Academies Press (US); 2015.

Wright

Keating

Balboni

Matulonis

Block

Prigerson

. Place of death: correlations with quality of life of patients with cancer and predictors of bereaved caregivers' mental health. J Clin Oncol. 2010;28(29):4457-4464.

Teno

Shu

Casarett

Spence

Rhodes

Connor

. Timing of referral to hospice and quality of care: length of stay and bereaved family members' perceptions of the timing of hospice referral. J Pain Symptom Manage. 2007;34(2):120-125.

Carlson

Herrin

, et al. Impact of hospice disenrollment on health care use and medicare expenditures for patients with cancer. J Clin Oncol. 2010;28(28):4371-4375.

May

Normand

Cassel

, et al. Economics of palliative care for hospitalized adults with serious illness: a meta-analysis. JAMA Intern Med. 2018;178(6):820-829.

Gozalo

Miller

. Hospice enrollment and evaluation of its causal effect on hospitalization of dying nursing home patients. Health Serv Res. 2007;42(2):587-610.

Wang

S-Y

Hall

Pollack

, et al. Trends in end-of-life cancer care in the Medicare program. J Geriatr Oncol. 2016;7(2):116-125.

10.

Ornstein

Roth

Huang

, et al. Evaluation of racial disparities in hospice use and end-of-life treatment intensity in the REGARDS cohort. JAMA Netw Open. 2020;3(8):e2014639.

11.

Brown

Engelberg

Sharma

, et al. Race/ethnicity, socioeconomic status, and healthcare intensity at the end of life. J Palliat Med. 2018;21(9):1308-1316.

12.

Miesfeldt

Murray

Lucas

Chang

C-H

Goodman

Morden

. Association of age, gender, and race with intensity of end-of-life care for Medicare beneficiaries with cancer. J Palliat Med. 2012;15(5):548-554.

13.

Smith

Earle

McCarthy

. Racial and ethnic differences in end‐of‐life care in fee‐for‐service Medicare beneficiaries with advanced cancer. J Am Geriatr Soc. 2009;57(1):153-158.

14.

Fishman

O'Dwyer

Henderson

Asch

Casarett

. Race, treatment preferences, and hospice enrollment: eligibility criteria may exclude patients with the greatest needs for care. Cancer. 2009;115(3):689-697.

15.

Yang

Goldin

Nova

Malhotra

Cantor

Tsui

. Racial disparities in health care utilization at the end of life among New Jersey Medicaid beneficiaries with advanced cancer. JCO Oncol Pract. 2020;16(6):e538-e548.

16.

Barnato

Chang

C-CH

Saynina

Garber

. Influence of race on inpatient treatment intensity at the end of life. J Gen Intern Med. 2007;22:338-345.

17.

Wasp

Alam

Brooks

, et al. End‐of‐life quality metrics among medicare decedents at minority‐serving cancer centers: a retrospective study. Cancer Med. 2020;9(5):1911-1921.

18.

Estrada

Agarwal

Stone

. Racial/ethnic disparities in nursing home end-of-life care: a systematic review. J Am Med Dir Assoc. 2021;22(2):279-290. e1.

19.

US census bureau. https://www.census.gov/library/stories/2023/10/2020-census-dhc-a-aian-population.html. Updated October 03, 2023. Accessed 7/3, 2025.

20.

Nelson

. Unequal treatment: confronting racial and ethnic disparities in health care. J Natl Med Assoc. 2002;94(8):666-668.

21.

Espey

Jim

Cobb

, et al. Leading causes of death and all-cause mortality in American Indians and Alaska Natives. Am J Public Health. 2014;104(S3):S303-S311.

22.

Brave Heart

MYH

Chase

. Historical trauma among Indigenous peoples of the Americas: concepts, research, and clinical considerations. In: DuranBrave

, eds. Heart MYH, eds. Wounds of History: Repair and Resilience in the Transgenerational Transmission of Trauma. Lanham, MD: Rowman & Littlefield; 2016:270-287.

23.

King

Smith

Gracey

. Indigenous health part 2: the underlying causes of the health gap. The lancet. 2009;374(9683):76-85.

24.

Gone

Hartmann

Pomerville

Wendt

Klem

Burrage

. The impact of historical trauma on health outcomes for indigenous populations in the USA and Canada: a systematic review. Am Psychol. 2019;74(1):20-35.

25.

Christensen

Damon

. Social determinants of health and response to disease associated with health outcomes of American Indian and Alaska native patients. JAMA Netw Open. 2022;5(3):e224827.

26.

Singh

Lee

Kim

Williams

. Social determinants of health among American Indians and Alaska Natives and tribal communities: comparison with other major racial and ethnic groups in the United States, 1990–2022. Int J MCH AIDS. 2024;13:e010.

27.

Kratzer

Jemal

Miller

, et al. Cancer statistics for American Indian and Alaska Native individuals, 2022: including increasing disparities in early onset colorectal cancer. CA Cancer J Clin. 2023;73(2):120-146.

28.

Wachterman

Sommers

. Dying poor in the US—Disparities in end-of-life care. JAMA. 2021;325(5):423-424.

29.

Arksey

O'malley

. Scoping studies: towards a methodological framework. Int J Soc Res Methodol. 2005;8(1):19-32.

30.

Munn

Peters

Stern

Tufanaru

McArthur

Aromataris

. Systematic review or scoping review? Guidance for authors when choosing between a systematic or scoping review approach. BMC Med Res Methodol. 2018;18:1-7.

31.

Tricco

Lillie

Zarin

, et al. PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation. Ann Intern Med. 2018;169(7):467-473.

32.

McLeroy

Bibeau

Steckler

Glanz

. An ecological perspective on health promotion programs. Health Educ Q. 1988;15(4):351-377.

33.

Chan

Loke

. The socio-ecological model approach to understanding barriers and facilitators to the accessing of health services by sex workers: a systematic review. AIDS Behav. 2017;21:2412-2438.

34.

Dixon

Piervil

Eastman

Ross

. A social-ecological review of the rural versus urban obesity disparity. Health Behavior and Policy Review. 2019;6(4):378-394.

35.

Schminkey

Liu

Annan

Sawin

. Contributors to health inequities in rural Latinas of childbearing age: an integrative review using an ecological framework. Sage Open. 2019;9(1):2158244018823077.

36.

Ridgeway

Wang

Rutten

LJF

, et al. Conceptualising paediatric health disparities: a metanarrative systematic review and unified conceptual framework. BMJ Open. 2017;7(8):e015456.

37.

Alvidrez

Castille

Laude-Sharp

Rosario

Tabor

. The national institute on minority health and health disparities research framework. Am J Public Health. 2019;109(S1):S16-S20.

38.

Chintapalli

Fernando Viegas de Moraes Leme

Desai

. Racial, ethnic and language-related disparities in palliative care utilization in spinal metastatic disease. Am J Hosp Palliat Care. 2025;0(0):10499091251333076. doi:10.1177/10499091251333076

39.

Nadeem

Khan

Raja

, et al. Temporal trends in mortality location among patients with intrahepatic cholangiocarcinoma in the USA: a retrospective observational analysis of national Center for health statistics mortality data. JGH Open. 2025;9(5):e70182.

40.

Ranganathan

Hammond

Jain

, et al. Palliative treatment disparities in metastatic colon cancer: US retrospective cohort study with disaggregated ethnic groups. BMJ Support Palliat Care. 2025. doi:10.1136/spcare-2025-005478

41.

Kohli

Wang

Garg

, et al. Disparities in receipt of chemotherapy at the end of life among patients with NSCLC. J Gen Intern Med. 2025;40:1-3.

42.

Jackson

Baggett

Spees

, et al. Evaluation of end-of-life quality care between American Indian and white North Carolina decedents diagnosed with lung cancer, 2003-2020. JCO Oncol Pract . 2025. OP-24-00580.

43.

Emerson

Spees

Jackson

, et al. End-Of-Life Care Quality for American Indians with Cancer. JNCI: Journal of the National Cancer Institute; 2025:djaf007.

44.

Jain

Mathew

Jain

, et al. Trends in location of death for individuals with pediatric cancer. JAMA Pediatr. 2024;178(11):1221-1223.

45.

Fereydooni

Valdez

Williams

Malik

Mehra

Judson

. Predisposing, enabling, and need factors driving palliative care use in head and neck cancer. Otolaryngol Head Neck Surg. 2024;171(4):1069-1082.

46.

Rodriguez

Popat

Rosas

Patel

. Racial and ethnic disparities in intensity of care at the end of life for patients with lung cancer: a 13-year population-based study. J Clin Oncol. 2024;42(14):1646-1654.

47.

Freeman

Omoleye

Zhao

Huo

. Palliative care use trends, racial/ethnic disparities, and overall survival differences among patients with metastatic breast cancer. J Palliat Med. 2024;27(6):763-775.

48.

Mathew

Jain

Patel

Hammond

Dee

Chino

. Trends in Location of death for individuals with ovarian Cancer in the United States. Obstet Gynecol. 2022;10:1097.

49.

Sonal

Jain

Bajaj

, et al. Trends and determinants of location of death due to colorectal cancer in the United States: a nationwide study. Ann Surg Oncol. 2024;31(3):1447-1454.

50.

Allen

Awunti

Guo

, et al. Unraveling racial disparities in supportive care medication use among end-of-life pancreatic cancer patients: focus on pain management and psychiatric therapies. Cancer Epidemiol Biomarkers Prev. 2023;32(12):1675-1682.

51.

Gold

Ghosh

Goldberg

Chino

Efstathiou

Kamran

. Disparities in testicular cancer incidence, mortality, and place of death trends from 1999 to 2020: a comprehensive cohort study. Cancer Rep. 2023;6(10):e1880.

52.

Bajaj

Jain

Potter

Dee

Yang

C-FJ

. Racial and ethnic disparities in end-of-life care for patients with oesophageal cancer: death trends over time. Lancet Reg Health Am. 2023;17:100401.

53.

Islam

Braithwaite

Zhang

Guo

Tailor

Akinyemiju

. Racial and ethnic inequities of palliative care use among advanced non‐small cell lung cancer patients in the US. Cancer Med. 2023;12(7):8567-8580.

54.

Hussaini

Blackford

Arora

Sedhom

Beg

Gupta

. Rural–urban disparities in mortality and place of death for gastrointestinal cancer in the United States from 2003 to 2019. Gastroenterology. 2022;163(6):1676-1678. e5.

55.

Shenker

Elizabeth McLaughlin

Chino

. Disparities in place of death for patients with primary brain tumors and brain metastases in the USA. Support Care Cancer. 2022;30(8):6795-6805.

56.

Khullar

Plascak

Habib

Nagengast

Parikh

. Extensive stage small cell lung cancer (ES-SCLC) and palliative care disparities: a national cancer database study. BMJ Support Palliat Care. 2022;14(e3):e2694-e2699.

57.

Deeb

Chino

Diamond

, et al. Disparities in care management during terminal hospitalization among adults with metastatic cancer from 2010 to 2017. JAMA Netw Open. 2021;4(9):e2125328.

58.

Shiovitz

Bansal

Burnett-Hartman

, et al. Cancer-directed therapy and hospice care for metastatic cancer in American Indians and Alaska natives. Cancer Epidemiol Biomarkers Prev. 2015;24(7):1138-1143.

59.

Guadagnolo

Huo

Buchholz

Petereit

. Disparities in hospice utilization among American Indian Medicare beneficiaries dying of cancer. Ethn Dis. 2014;24(4):393-398.

60.

Malhotra

Bundoc

Chaudhry

Teo

Ozdemir

Finkelstein

COMPASS study group . A prospective cohort study assessing aggressive interventions at the end-of-life among patients with solid metastatic cancer. BMC Palliat Care. 2022;21(1):73.

61.

Park

Douglas

Boveington-Molter

Lipson

. Aggressive end-of-life care and caregiver satisfaction for patients with advanced cancer. West J Nurs Res. 2024;46(1):19-25.

62.

Obermeyer

Makar

Abujaber

Dominici

Block

Cutler

. Association between the Medicare hospice benefit and health care utilization and costs for patients with poor-prognosis cancer. JAMA. 2014;312(18):1888-1896.

63.

Temel

Greer

Muzikansky

, et al. Early palliative care for patients with metastatic non–small-cell lung cancer. N Engl J Med. 2010;363(8):733-742.

64.

Wachterman

Luth

Semco

Weissman

. Where Americans die—is there really “no place like home”. N Engl J Med. 2022;386(11):1008-1010.

65.

Jones

. The persistence of American Indian health disparities. Am J Public Health. 2006;96(12):2122-2134.

66.

Isaacson

Lynch

. Culturally relevant palliative and end-of-life care for US indigenous populations: an integrative review. J Transcult Nurs. 2018;29(2):180-191.

67.

Marr

Neale

Wolfe

Kitzes

. Confronting myths: the Native American experience in an academic inpatient palliative care consultation program. J Palliat Med. 2012;15(1):71-76.

68.

Cohen

Gabriel

Terrell

. The case for diversity in the health care workforce. Health Aff. 2002;21(5):90-102.

69.

Fariman

Ahmadi

Trogdon

Coombs

Elston Lafata

. Association of patient-provider race/ethnicity concordance and patient-reported shared decision making among US adults: a national study, 2015–2021. J Gen Intern Med. 2025:1-11. https://doi.org/10.1007/s11606-025-10052-4

70.

Soltoff

Purvis

Ravicz

, et al. Factors influencing palliative care access and delivery for great plains American Indians. J Pain Symptom Manage. 2022;64(3):276-286.

71.

Woodrell

Patel

Wilder

Sundaram

Chung

Ufere

. Cultural humility and end‐of‐life communication with people with advanced liver disease. Clin Liver Dis. 2022;20(3):81-85.

72.

Singh

Haghayegh

Shah

, et al. A qualitative exploration of allied health providers’ perspectives on cultural humility in palliative and end-of-life care. BMC Palliat Care. 2023;22(1):92.

73.

Hira

Palnati

Bhakta

. Understanding the influence of culture on End-of-Life, palliative, and hospice care: a narrative review. Cureus. 2025;17(7):e87960.

74.

Hoare

Antunes

Kelly

Barclay

. End-of-life care quality measures: beyond place of death. BMJ Support Palliat Care. 2022;14(e1):e613-e621.

75.

Barnato

Anthony

Skinner

Gallagher

Fisher

. Racial and ethnic differences in preferences for end-of-life treatment. J Gen Intern Med. 2009;24(6):695-701.

76.

Zambrano

Egloff

Gonzalez-Jaramillo

, et al. A core outcome set for best care for the dying person: results of an international Delphi study and consensus meeting. Palliat Med. 2025;39(1):163-175.

77.

VanderWeele

Robinson

. On the causal interpretation of race in regressions adjusting for confounding and mediating variables. Epidemiology. 2014;25(4):473-484.

78.

van Zwieten

Tennant

Kelly-Irving

Blyth

Teixeira-Pinto

Khalatbari-Soltani

. Avoiding overadjustment bias in social epidemiology through appropriate covariate selection: a primer. J Clin Epidemiol. 2022;149:127-136.

79.

Virnig

Moscovice

Durham

Casey

. Do rural elders have limited access to Medicare hospice services? J Am Geriatr Soc. 2004;52(5):731-735.

80.

Bauer

Plescia

. Addressing disparities in the health of American Indian and Alaska Native people: the importance of improved public health data. Am J Public Health. 2014;104:S255-S257.

81.

Meghani

Hinds

. Policy brief: the institute of Medicine report dying in America: improving quality and honoring individual preferences near the end of life. Nurs Outlook. 2015;63(1):51-59.

82.

Chuang

Georgia

Nymeyer

Williams

. A decade of studying drivers of disparities in end-of-life care for Black Americans: using the NIMHD framework for health disparities research to map the path ahead. J Pain Symptom Manage. 2022;64(1):e43-e52.

83.

Cohen

. Racial/ethnic disparities in hospice care: a systematic review. J Palliat Med. 2008;11(5):763-768.

Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

0.00 MB

0.02 MB