Table 1 Characteristics of the studies included in the review (n = 14)

Gardner et al.[2]; USA; 2018

Scoping

Review

To document inequities, identify key barriers in access to and utilization of care, and suggest next steps for research and practice to reduce disparities and promote health equity among seriously ill adults.

22 articles.

-Two Major Themes: (i) Disparities in access and use of palliative and EOL care, focusing on patient consultations, referrals, and utilization of specialized PC services by race and ethnicity; and (ii) Social determinants of high-quality palliative and EOL care, examining factors that drive or impede PC access among communities of color.

-Drivers of Racial and Ethnic Differences: (a) Financial and insurance barriers, (b) cultural preferences for EOL care, (c) care setting and geographic region, (d) misconceptions and lack of information about PC, and (e) provider communication challenges and perceived discrimination.

Krakauer et al.[8]; USA; 2018

Expert

opinion

To describe Rwanda’s national PC policy.

It does not apply.

(1) Policy: The Ministry of Health has formally requested all referral and provincial hospitals to establish PC services. (2) Opioid Accessibility: Many hospitals have yet to order oral morphine. (3) Education: Training benefits patients only if trainees are supported in implementing their new PC knowledge and skills as part of their official, salaried duties. (4) Implementation: Referral and provincial hospitals across the country are actively working to comply by establishing PC services for adults and children. (5) Challenges: Significant barriers to universal access to high-quality PC include a lack of trained staff and numerous competing healthcare priorities that make it difficult to allocate staff time and funds for PC.

Buck et al.[9]; United Kingdom; 2020

Case note

review

To describe the nature and scope of a new Hospice-at-Home service and assess its equality in provision.

A total of 321 patients were supported by a Hospice-at-Home service over one year; of those with a documented diagnosis (n = 293), 75% had cancer (221/293).

(1) Demand exceeded supply: twice as many night-care episodes were requested (n = 1237) than provided (n = 613). (2) Inequalities in access to the service were linked to underlying diagnosis and socioeconomic status. (3) Among those who died at home in areas surrounding the hospice, 53% of cancer patients and 11% of non-cancer patients received Hospice-at-Home support. (4) Individuals who received Hospice-at-Home care were often more affluent than the average population within their area. (5) The service’s identified roles included: care planning and implementation, specialist EOL care assessment and advice, supporting complex patients until hospice beds became available, and providing clinical nursing care.

Woods et al.[10]; Australia; 2019

Cross-

sectional

study

To investigate equity of specialist PC service provision by characterizing and comparing Indigenous and non-Indigenous patients at the point of entry to care.

140,267 patient records, including 1465 indigenous, 133,987 non-indigenous, and 4905 with a missing identifier.

-Indigenous patients compared to non-Indigenous patients were younger (mean 62.8 versus 73.0 years, p < 0.001), had a higher proportion of females (51.5% versus 46.3%; p < 0.001), and were more likely to reside outside major cities (44.2% versus 21.5%, p < 0.001).

-Indigenous patients (especially those living outside major cities) are substantially underrepresented in care provided by services participating in the nationwide specialist PC Collaboration, likely reflecting widespread access barriers.

-Indigenous patients who are able to access these services do not disproportionately experience clinically significant impediments to initiating care.

Stajduhar et al.[11]; Canada; 2019

Ethnographic research

To identify barriers to accessing care among structurally vulnerable people at the EOL.

25 people experiencing structural vulnerability, 25 support persons, and 69 healthcare professionals.

-Five significant barriers to accessing care at the EOL were identified: (1) the survival imperative; (2) the normalization of dying; (3) the problem of identification; (4) professional risk and safety management; and (5) the cracks in a fragmented care system.

-The findings reveal inequities in accessing care at EOL and emphasize how individuals who do not fit the ‘normative’ palliative patient population, for whom PC programs and policies are currently designed, face significant access barriers.

Chukwusa et al.[12]; United Kingdom; 2019

National population-

based observational study

To understand the role of geographic access to inpatient palliative and EOL care facilities in determining the place of death and how geographic access varies by settlement type (urban and rural).

Individual data (n = 430467, aged > 25) were extracted from the Office for National Statistics death registry.

-An inverse association was found between drive time to hospice and hospice deaths (Model 1), demonstrating a dose–response relationship.

-Patients living more than 10 min away from inpatient palliative and EOL care facilities were less likely to die in these settings compared to those living closer (i.e., ≤ 10 minutes’ drive time). Specifically, in rural areas, the APR ranged from 0.49 to 0.80 in Model 1 and from 0.79 to 0.98 in Model 2. In urban areas, the APR ranged from 0.50 to 0.83 in Model 1 and from 0.98 to 0.99 in Model 2.

-The effects were more pronounced in rural areas than in urban areas.

Gardiner et al.[13]; United Kingdom; 2020

Critical

Debate

To review and criticize key evidence on the financial costs of informal caregiving, highlighting how these costs represent an equity issue in PC.

It does not apply.

(1) The financial costs of informal caregiving at the EOL can be significant, encompassing caregiver time costs, out-of-pocket expenses, and employment-related costs. (2) The financial burden is associated with a range of negative outcomes for both patients and caregivers. (3) Evidence indicates that the financial costs of caregiving are not distributed equitably. (4) Sources of inequity mirror those influencing access to specialist PC, including diagnosis (cancer vs. non-cancer), socioeconomic status, gender, cultural and ethnic identity, and employment status.

van Steijn et al.[14]; Spain; 2021

Comparative methodology

To shed light on equity in access to PC, this study compares the driving times of populations to specialized PC services.

Populations from Ireland, Spain and Switzerland.

-The percentage of the population living less than thirty minutes away from the nearest PC provider varies among Ireland (84%), Spain (79%), and Switzerland (95%).

-The percentages of the population living more than an hour away from services were 1.87% in Spain, 0.58% in Ireland, and 0.51% in Switzerland.

Nelson et al.[15]; USA; 2021

Conceptual Framework.

To outline a modified conceptual framework that supports researchers, clinicians, and staff in evaluating priorities to ensure individualized patient needs are addressed from a position of equity.

It does not apply.

(1) PC can improve quality of life, but access to this relief from suffering is not equally reflected across populations. (2) Racial biases are inherently learned and embedded within the system that PC operates in; meaning biases can be experienced at any level of the socioecological spectrum. (3) When developing effective PC programs for diverse populations, both locally and globally, it is imperative to address these differences, as each has ramifications for providers, patients, and families.

French et al.[16]; United Kingdom; 2021

Narrative synthesis

To explore the extent to which socioeconomic position is associated with access to palliative and EOL care in the UK and to investigate how factors related to socioeconomic position influence access to care.

29 articles.

-The synthesis generated four main themes, within which concepts of candidacy were evident: identifying needs; taking action; local conditions; and receiving care.

-Socioeconomically disadvantaged populations are more likely to receive hospital-based care at the EOL, and that there is a lack of evidence regarding access to and use of services that may be providing generalist PC in the community.

Javanparast et al.[17]; Australia; 2022

Document

review

To examine the extent to which Australian federal and South Australian PC policies and initiatives incorporate equity, and to identify evidence gaps and research priorities that can inform equity-oriented policies and practices.

25 federal and South Australian documents were analyzed, along with key informant perspectives

gathered through interviews (N = not revealed).

(1) The authors found incremental progress in considering equity in Australian PC policies over the past few years. (2) Six key themes emerged: Identifying population groups experiencing poor access to PC; Strategies to improve access including increased awareness of PC; Intersectoral collaboration and community engagement; Actions to address the social determinants of equity in PC; Equity-focused research and evaluation; and Evidence gaps and research priorities in equity and PC. (3) Strategies to address systemic barriers, as well as social, political and cultural determinants of inequity, were less evident in policy documents. (4) There was little evidence of actions to engage and empower communities. (5) Findings about evidence gaps and research priorities for equity-focused PC primarily stemmed from interview data, covering areas such as death and dying, care models, economic analyses, workforce and education, and access to PC.

Rosa et al.[18]; USA; 2022

Expert

opinion

To shed light on the inequities in access to PC services or essential PC medicines in low- and middle-income countries.

PC experts in Bangladesh, Colombia, Egypt, Sudan, Uganda, and Zambia.

(1) There is an urgent need for evidence-based advocacy focusing on significant barriers such as urban/rural context, cancer-centeredness, service delivery gaps, opioid formulary limitations, public policy, and education deficits. (2) Advocacy is situated within the context of an emerging global health narrative that designates PC provision as an ethical obligation of all health systems. (3) PC evaluation and indicator data should assess the extent to which practitioners in low- and middle-income countries lead and participate in global and regional advocacy. (4) Investment in transnational advocacy initiatives, research on PC access and cost-effective models in low- and middle-income countries, and capacity building for a global community of practice is necessary to capture the attention of policymakers at all levels of health system governance.

Wong et al.[19]; Canada; 2023

Scoping

review

To examine and evaluate the literature on gender disparities in EOL care and explore relevant themes that could inform future research and practice.

15 articles.

(1) Most studies were of poor to moderate quality. (2) Six major themes were identified: living situation, symptom experience, care context, care preferences, caregiving, and coping strategies. (3) Significant gender disparities exist in EOL care. (4) PC professionals can play a pivotal role in addressing these disparities by building awareness of personal biases and using that awareness to support patients and families, educate future medical professionals, and initiate important care discussions that can overturn unequal gendered expectations.

Marcewicz et al.[20]; USA; 2022

Scoping

review

To examine portrayals of race and racial differences in outcomes in the PC literature, a framework using critical race theory was created to aid in this examination.

57 articles.

(1) Articles specifically describing racial differences were prevalent in the topic areas of quality (75%), hospice (53%), PC services (40%) and spirituality/religion (40%). (2) The top three reasons posited for racial differences were patient preference (26%), physician bias (23%), and cultural barriers (21%). (3) Using the “Critical Race Theory” framework, 65% of articles suggested that racial differences were issues that needed correction, while only a small percentage provided narrative (5%) or data on the perspectives of people of color (11%) to support their assumptions about these differences.