Equity of access to palliative care: a scoping review

Abstract

Background

Palliative care (PC) has the potential to alleviate suffering and enhance quality of life for patients with serious progressive diseases; however, access to PC remains unequal across different populations.

Objective

This scoping review aimed to systematically examine the literature on: (1) the primary contributors to inequity in accessing PC; (2) the key barriers to achieving equitable access to PC; (3) the essential recommendations for addressing these issues.

Methods

The PubMed, Web of Science, and Embase databases were searched for English-language articles published since 2017. Eligibility criteria: Population- people with chronic, progressive, life-threatening, or limiting diseases. Interventions- any PC intervention, including teams, services, programs, or strategies implemented in both hospital and community settings. Outcomes- equity in access to PC. Study Design- any. The PRISMA (extension for scoping reviews) recommendations were followed.

Results

Fourteen studies were included: half originated from North America (USA, n = 5; Canada, n = 2) and the other half from Europe (UK, n = 4; Spain, n = 1) and Australia (n = 2). Most studies focused on ethnic/racial discrimination (n = 4) or geographical discrepancies (n = 4). The remaining studies addressed PC in low- or middle-income countries (n = 2), gender discrepancies (n = 1), informal caregiving (n = 1), socioeconomic inequities (n = 2), and barriers to accessing PC (n = 1). Barriers to equitable access to PC include difficulties in identifying patients nearing the end of life, the “survival imperative,” the “normalization of dying,” misconceptions, mistrust, limited information about PC and end-of-life care, and a fragmented care system. Conversely, enablers of equitable access to PC encompass proper patient evaluation and workforce education, addressing basic survival needs and social determinants of equity, and promoting intersectoral collaboration, community advocacy, and engagement.

Conclusion

Achieving equity in PC is a complex endeavor requiring strong commitment and action at both policy and governmental levels. Additionally, it calls for sustained efforts in clinical practice, workforce planning, capacity building, community engagement, and research investment to implement and assess public health approaches to PC. Future research should aim to provide more comprehensive and generalizable insights into the determinants of equitable access, as well as the enablers and barriers to PC and end-of-life care.

Introduction

Rationale

According to the World Health Organization, palliative care (PC) is a cornerstone of healthcare systems [1]. It enhances the quality of life for patients (both adults and children) and their families who are facing challenges related to life-threatening diseases [1]. PC is essential for a wide range of clinical conditions due to its holistic approach, which reduces symptom burden and, consequently, enhances the well-being of individuals and families living with serious illnesses [2].

In alignment with the United Nations’ 17 Sustainable Development Goals [3], which include promoting good health and well-being, ensuring global access to a robust PC network is crucial for guaranteeing healthy lives for individuals of all ages. In 2018, national and local governments were urged to integrate palliative care (PC) into health systems as an essential component of Universal Health Coverage [4].

Recognized as a fundamental human right, access to PC should ideally be delivered through person-centered and integrated health services tailored to individual needs, preferences, and values. Unfortunately, only approximately 14% of those in need currently receive PC [1], raising important questions about the equity of access to these vital services.

With this study, we aimed to map the literature from the past five years on equitable access to PC.

Objectives

This scoping review aimed to map the literature on: (1) the primary contributors to inequity in accessing PC; (2) the key barriers to achieving equitable access to PC; (3) the essential recommendations for addressing these issues.

Methods

This scoping review followed the recommendations of the “Joanna Briggs Institute Manual for Evidence Synthesis” [5]. This approach was selected to ensure systematic identification, selection, and mapping of the available literature relevant to our review.

This review was reported in accordance with the “Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) – extension for scoping reviews” guidelines [6]. The PRISMA checklist is provided in Supplementary File S1.

Protocol and registration

This scoping review was not registered.

Eligibility criteria

Population- people with chronic, progressive, life-threatening, or limiting diseases.

Interventions- any PC intervention, including teams, services, programs, or strategies implemented in both hospital and community settings.

Outcomes- equity in access to PC.

Study Design- any.

Exclusion Criteria- Articles focused on PC for specific diseases and those not freely available or not accessible through our Faculty’s library subscriptions.

Information sources

The PubMed, Web of Science, and Embase databases were searched. The coverage dates for the searches were until February 20, 2023, for PubMed and April 15, 2023, for both Web of Science and Embase. Original authors were not contacted to identify additional sources.

Search

Our search used free terms: (“palliative care” or “hospice care” or “end-of-life care”) and equit* and access*. The search strategy used in the PubMed database was as follows: ((“palliative care“[All Fields] OR “hospice care“[All Fields] OR “end-of-life care“[All Fields]) AND (“equit*“[All Fields] AND “access*“[All Fields])) AND ((2017:2023/2/20[pdat]) AND (english[Filter]).

The search strategy used in the Web of Science and Embase databases was as follows: (“palliative care” or “hospice care” or “end-of-life care”) (Topic) AND equit* (Topic) AND access* (Topic) AND English (Language) AND Timespan: 2017-01-01 to 2023-04-15 (Publication Date).

Selection of sources of evidence

The first author assessed the titles and abstracts of the identified articles based on predefined inclusion and exclusion criteria. Subsequently, studies deemed either selected or uncertain underwent full-text analysis, which was independently conducted by both authors in accordance with the established criteria. The authors reached a consensus on the inclusion of articles through regular meetings and discussions, without employing automation tools in the process.

Data charting process

A data-charting form was created using Microsoft Excel© 16.0 (Microsoft Corp.; 2023). Both authors independently completed the form, and the most recent version is presented in Table 1.

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

Data items

Data were collected on the following variables: authors, publication year, country, study design, objectives, setting, population, and main results.

Synthesis of results

Due to variations in the results, a meta-analysis was not performed. Findings are presented in a narrative format. We synthetized the results, presenting: (1) contributors to inequity in accessing PC and end-of-life (EOL) care services; and (2) key barriers and enablers to equitable access to PC and EOL care services. Table 2 outlines the identified challenges and recommendations for enhancing equitable access to PC and EOL services. Figure 2 illustrates the main barriers and enablers to equitable access to PC and EOL care services.

Table 2 Challenges and recommendations for Enhancing Equitable Access to Palliative Care and End-of-life services

Results

Selection of sources of evidence

An initial search yielded 588 articles. After excluding 245 duplicates, we screened 343 records. From these, we excluded 306 and assessed 37 reports for eligibility. Among these, 23 were excluded due to a focus on disease-specific populations (n = 10) or a lack of relevant interventions and outcomes (n = 11). Ultimately, 14 articles met the criteria for inclusion in this scoping review. The flow diagram [7] of the study selection process is illustrated in Fig. 1.

Fig. 1

Flow diagram

Characteristics of sources of evidence

In this review, half of the studies were conducted in North America (USA, n = 5; Canada, n = 2), while the other half originated from Europe (UK, n = 4; Spain, n = 1) and Australia (n = 2). The study designs varied, including three scoping reviews, two expert opinions, and a mix of other designs such as case note reviews, cross-sectional studies, ethnographic research, national population-based observational studies, critical debates, comparative methodologies, conceptual frameworks, narrative syntheses, and document reviews.

Half of the articles focused on ethnic or racial discrimination (n = 4) or geographical disparities (n = 4). The remaining articles addressed PC in low- or middle-income countries (n = 2), gender discrepancies (n = 1), informal caregiving (n = 1), socioeconomic inequities (n = 2), and barriers to accessing PC (n = 1).

Results of individual sources of evidence

Study 1: Gardner et al. [2]

Authors investigated racial and ethnic disparities in the utilization of PC. The findings from multiple studies were inconsistent. While four studies showed no racial differences in inpatient PC consult rates, time to inpatient PC consult, or the use of outpatient PC services, three studies indicated that minority patients received fewer PC services. Among cancer patients, two studies found that African American patients received more PC services compared to white and other minority patients. Additionally, six studies explored racial differences in EOL and serious illness care without directly examining disparities in PC services, yielding inconsistent findings. A systematic review (n = 20) on EOL care for ethnic minority patients with dementia revealed that African American, Hispanic, and Asian patients received more aggressive EOL care, including artificial nutrition, hydration, and mechanical ventilation, and were less likely to have documented advance care planning. Two studies supported these disparities in advance care planning, focusing on the documentation of advance directives such as health care proxies, do-not-resuscitate orders, and living wills. Furthermore, another study examining the experience of women with metastatic breast cancer found that African American women were more likely to experience unmanaged pain, psychosocial distress, and unmet informational needs regarding their care.

Financial and insurance challenges emerged as significant barriers to accessing PC and high-quality EOL care in four studies. Among Latino community-dwelling patients with end-stage renal disease, financial problems were identified as a major source of distress and a hindrance to receiving high-quality care, affecting their ability to afford necessities such as food, transportation, and essential utilities like gas and electricity. Similarly, in a predominantly Asian patient sample, financial problems were ranked as the primary barrier to high-quality EOL care. Two studies focusing on the barriers to and experiences of EOL care among African American patients highlighted the lack of health insurance as noted by healthcare providers, while family members emphasized financial hardship and depletion of savings as significant obstacles.

Five studies explored how cultural and religious preferences might pose barriers to care for racial and ethnic minorities. For instance, Latino patients with end-stage renal disease expressed a preference for nonpharmacologic treatments due to fears of medication-related harm. They also emphasized the importance of family decision-making in EOL care, viewing it as culturally significant. This study revealed a fatalistic belief about suffering, with patients perceiving it as a punishment from God that they were meant to endure. Similar findings were observed in African American and Hispanic patients, who felt they deserved punishment and preferred life-sustaining treatments for moral reasons. This preference was particularly pronounced among African American and Hispanic women. PC providers identified faith a barrier for African American patients, believing they preferred to entrust matters to God. Interestingly, in an Asian sample, “cultural and religious barriers” were ranked as the least significant obstacles to high-quality EOL care.

Three studies identified racial and ethnic barriers to care influenced by the care setting or geographic region. A comprehensive analysis of disparities in PC within hospitals serving predominantly white, mixed, or majority minority patients revealed that stroke patients, regardless of their race or ethnicity, were less likely to receive PC in mixed or majority minority hospitals. The only two studies focusing on PC for American Indians and Alaskan Natives indicated that rural care settings lacked resources for providing culturally competent and accessible PC for this population.

Additionally, five studies identified barriers related to misconceptions, mistrust, and a lack of information about PC among minority patient populations. One study surveyed White, African American, and Hispanic patients, finding that those who had heard of PC were more likely to be white and possess higher education and income levels. Mistrust of the medical system was particularly pronounced in studies involving American Indians and African Americans, especially among African American males. PC providers also noted that mistrust of healthcare providers and a lack of information about PC were significant barriers to receiving high-quality EOL care in the African American community.

Six studies highlighted provider-level challenges, including communication issues, language barriers, perceived discrimination, and inadequate cultural competency training and research. Latino patients with end-stage renal disease faced language and cultural barriers, expressing a preference for discussions about serious care matters to occur in their language and cultural context. African American family members reported communication problems, while an Asian sample identified provider behaviors and communication issues as barriers to high-quality EOL care. Additionally, African American patients experienced direct discrimination, citing historical mistreatment as a significant barrier to trust. Furthermore, African American cancer patients reported feeling overlooked by providers regarding information and referrals for available outpatient palliative and supportive care services compared to white patients. Studies on provider perceptions indicated that a lack of preparation and training in cultural sensitivity was viewed as a barrier to delivering palliative and EOL care for minority populations.

Authors examined racial and ethnic disparities in the use of PC, revealing inconsistent findings across studies. While some studies reported no differences, others indicated that minority patients received fewer PC services, particularly due to financial and insurance challenges. Cultural and religious preferences, misconceptions, mistrust, and a lack of information also served as barriers for minority populations.

Provider-level challenges, including communication issues, language barriers, perceived discrimination, and insufficient cultural competency training, were identified in six studies. Overall, the research highlighted the complex challenges that influence equitable access to PC and the quality of EOL care for racial and ethnic minorities.

Study 2: Krakauer et al. [8]

Authors described how the Rwandan government fostered the development of PC. In 2005, the government initiated efforts to develop PC, conducting the first training that same year. The first hospital-based PC program launched in 2009 in Kigali, providing inpatient PC for both adults and children, along with connections to home services.

Formal training, organized by Rwanda’s Ministry of Health, began in 2012 at three government hospitals and later expanded to six district hospitals and community health centers. The Human Resources for Health Program incorporated PC training for internal medicine residents, along with clinical mentoring at major teaching hospitals. Several Rwandan healthcare professionals also participated in PC training programs in Uganda and the USA.

In 2013, standardized forms were introduced to enhance patient care and communication. That same year, the Rwanda PC and Hospice Organization was established to promote PC across the country. In 2015, the Ministry of Health officially mandated that all referral and provincial hospitals establish PC services.

The law, aligned with the World Health Organization’s concept of a balanced approach to national opioid policies, established guidelines for secure opioid supply chains. It permitted opioid prescriptions not only by all doctors in district hospitals but also by nurses in community health centers, within specific limits set by Rwanda’s Minister of Health. The law aimed to ensure universal and safe access to opioid analgesics once adequate infrastructure and training were established.

An estimate of opioid consumption at the most advanced PC hospital was submitted to and approved by the International Narcotics Control Board. To enhance accessibility, Rwanda’s Ministry of Health began importing immediate-release morphine tablets and affordable morphine powder, which were processed at a government production facility to ensure quality before distribution to hospitals. As a result, morphine consumption surged from nearly zero to over 0.85 mg/per person/per year within just one year.

Study 3: Buck et al. [9]

During the 12-month study period, the “Hospice at Home” service provided care for 321 patients, delivering a total of 1122 episodes of night care (median of two per patient, range 0–48). The majority of patients were aged 78 or older, with 46% being women and three-quarters diagnosed with cancer. One in five patients lived alone. Most patients (55%) passed away within one week of referral, while 6% died within 24 h, and 13% were referred more than a month prior to death. The primary reasons for referral included psychological support for patients and families (54%) and symptom control (52%). Approximately 91% of patients with a recorded preference died in their preferred place.

Over the study period, both the supply (care provided) and demand (care requested) for the service increased, with the supply nearly tripling from 64 to 178 episodes as the service expanded. However, unmet needs, defined as episodes of care requested but not provided, also rose. Regarding service equity, the areas most frequently served by Hospice at Home tended to have patients who were less socially deprived than the overall population within those areas. Additionally, very few patients in Fenland, the most rural and deprived area, received the service. Hospice at Home accounted for 53% of those who died at home with cancer, compared to only 11% of those who died from non-cancer conditions.

Study 4: Woods et al. [10]

Indigenous patients, on average, were approximately ten years younger than their non-Indigenous counterparts (62.8 vs. 73.0 years, p < 0.001). Additionally, the Indigenous group had a higher proportion of females (51.5% vs. 46.3%, p < 0.001) and were more likely to reside outside major cities (44.2% vs. 21.5%, p < 0.001). Both groups predominantly had cancer (77.5% for Indigenous vs. 78.5% for non-Indigenous, p = 0.58). A greater percentage of Indigenous patients initiated their care in a hospital inpatient setting (63.0% vs. 59.5%, p < 0.001) or in an ambulatory setting (2.4% vs. 1.4%, p < 0.001), whereas a relatively lower percentage began care in a community setting (34.6% vs. 39.1%, p < 0.001).

Study 5: Stajduhar et al. [11]

The authors identified five main barriers to accessing PC, many of which are interconnected.

Participants experiencing social disadvantages and oppression—such as poverty, inadequate housing, and racism—reported limited access to PC due to a “survival imperative.” For these individuals, basic needs like shelter and food took precedence over PC services, relegating medical appointments to a secondary status. Consequently, advance care planning and discussions about death were largely absent from their lives. A widespread lack of awareness regarding available PC services was evident among participants and community-based service providers alike. While some individuals sought formal healthcare, the system often failed to acknowledge the significant challenges these participants faced in meeting their basic survival needs. Observations revealed a gap in healthcare providers’ recognition of social care needs. Addressing deficits related to housing, food, security, income, and transportation is crucial for effective PC and ensuring quality EOL care when these fundamental issues are resolved.

Participants, accustomed to navigating social disadvantages such as poverty and homelessness, had often encountered death within their social circles and were frequently warned about the potential consequences of their lifestyles. This phenomenon represents a “normalization of dying.” When informed about their palliative trajectory, participants often did not exhibit the expected concern.

Identifying patients who were dying and could benefit from PC proved challenging in a system that heavily relies on workers outside the formal medical framework, many of whom lacked knowledge about health or PC. Consequently, referrals often led to chronically ill participants who were not expected to die soon. Even within the healthcare system, patients were not guaranteed recognition of their palliative needs. Instances of unmanaged symptoms and inhumane deaths were reported. However, recognizing and connecting participants with palliative-oriented providers—especially those attuned to social determinants of health—significantly improved access to PC. Identified patients, primarily those with cancer, experienced enhanced care that addressed their pain, provided additional support, and involved compassionate providers dedicated to their well-being.

Professional risk and safety management

Current PC policy prioritizes “home deaths,” but this approach can limit access for individuals facing structural vulnerabilities, such as homelessness. The intersection of structural and individual vulnerabilities often leads institutions and providers to view participants’ circumstances as unsafe. Consequently, safety policies may result in the discontinuation of health services, even for housed individuals, in environments deemed risky.

Participants who prefer to remain in their communities encounter significant barriers to accessing home health services due to unsafe housing conditions and societal stigma. Providers, constrained by risk management policies, experience distress and frustration, which further exacerbates these barriers to PC access and amplifies the vulnerabilities faced by these individuals.

Cracks in a fragmented care system

Structural vulnerabilities create significant gaps within the care system, leading to uncertainty about who is responsible for addressing unmet PC needs. Participants often struggle to navigate these fragmented services, which require support from multiple sources. Factors such as limited health literacy, educational background, cognitive capacity, and material resources further complicate access to care.

Navigating the maze of health and social services becomes an increasingly daunting task, particularly in the absence of informal caregiving support. The lack of continuity among care providers poses substantial challenges for individuals who have experienced stigmatization and injustice. Discontinuity in care often results in episodes of treatment that lack clear guidance or explanations, ultimately hindering access to necessary PC and support.

Study 6: Chukwusa et al.[12]

More than three-quarters of adult deaths occurred in urban areas (79.9%), with 20.1% in rural areas. Hospitals were the most common place of death in both contexts, accounting for 43.1% of deaths in rural areas and 48.4% in urban areas. Patients aged 85 and over represented the largest proportion of deaths in both rural (43.2%) and urban areas (39.7%). Cancer was responsible for 30.1% of deaths in rural areas and 30.4% in urban areas, while cardiovascular diseases accounted for 21.0% of deaths in rural areas and 21.1% in urban areas. Urban patients had better geographical access to inpatient palliative and EOL care facilities. Those who died in the hospital had shorter median drive times in both rural (9.7 min) and urban areas (4.5 min) compared to hospice deaths in rural (17.9 min) and urban areas (9 min).

In Model 1 (Hospice vs. Home), urban patients living more than 10 min away from hospices were less likely to die in a hospice (Adjusted Prevalence Ratio [APR] range: 0.50–0.83) compared to those living closer (0–10 min). In rural areas, the trend was similar, with greater effects (APR range: 0.49–0.80). In Model 2 (Hospital vs. Home), urban patients living more than 10 min away from a hospital (APR range: 0.97–0.99) were less likely to die in a hospital compared to those living closer (0–10 min). In rural areas, the trend was also similar, with greater effects (APR range: 0.79–0.98).

Study 7: Gardiner et al.[13]

The financial costs of informal caregiving for individuals nearing the EOL are substantial, encompassing work-related costs, caregiver time, and out-of-pocket expenses. In palliative and EOL care contexts, these costs increase as meeting the needs of the ill person takes precedence over financial considerations. International studies underscore the significance of these caregiving costs, which include both direct expenses (e.g., transport, food, medications) and indirect costs (e.g., employment impacts, caregiver time, caregiver health). Informal caregivers globally make substantial contributions to healthcare systems, with estimates suggesting they account for up to 70% of total healthcare expenditures.

Women are more likely to assume caregiving roles and face greater financial challenges than men. Ethnic minority groups often experience heightened financial vulnerability compared to white ethnic groups, influenced by cultural identity and socioeconomic factors. This financial strain often leads to significant life changes, such as relocating, delaying education, or deferring medical care for other family members. Employment is also impacted, as caregivers may adjust their work hours, potentially affecting career progression and earnings.

In the last five months of life, informal care costs escalate, highlighting the increasing challenges faced by caregivers in PC. Caregivers for non-cancer patients may encounter additional difficulties, as they are often ineligible for certain financial support or benefits. Socioeconomic status significantly influences the burden, with individuals from lower socioeconomic groups experiencing the most severe financial strain. The educational level also correlates strongly with income, with those holding higher educational qualifications generally earning more. Financial challenges can be particularly catastrophic for those already facing deprivation.

Employment status introduces additional equity concerns, as individuals with caregiving responsibilities typically earn less than those without. This underscores the multifaceted challenges and inequities faced by informal caregivers within the PC context.

Study 8: van steijn et al. [14]

Accessibility to specialized PC services varies across Ireland, Spain, and Switzerland. In Ireland, fewer than 10% of areas are over a 60-minute drive from a specialized PC service, with 54% of areas having access within a 30-minute drive. In Spain, 34% of the country is more than an hour’s drive from the nearest specialized PC service, and only 20% of areas have access within 30 min, primarily in provincial capitals and surrounding regions. In Switzerland, over 40% of areas are located more than 60 min from a specialized service.

In all three countries, however, the majority of the population lives within a 0–30 min drive of specialized PC services (Ireland 84%, Spain 79%, Switzerland 95%). The proportion of people living within a 30- to 60-minute drive is lower, with even fewer residing beyond a 60-minute drive: 20.19% of Spaniards, 15.31% of Irish, and 4.81% of Swiss live further than 30 min from the nearest specialized PC service. Of these, 3.19% in Spain, 1.31% in Ireland, and 0.81% in Switzerland are more than 60 min away from specialized PC services.

Study 9: Nelson et al. [15]

Although PC’s importance is well-established, evidence highlights that social, cultural, and economic factors limit access, particularly for marginalized populations. Black individuals, for example, frequently report negative experiences with healthcare systems due to systemic racism, which hinders their engagement with PC. Racial biases embedded within the system affect all socioecological levels, with providers’ practice styles, communication issues, and cultural insensitivity posing significant barriers for patients and families.

Globally, inequities in PC access are stark: around 80% of those needing PC live in low- and middle-income countries, yet only 14% have access. This disparity is worsened by limited awareness and acceptance of the PC model, unequal opioid distribution, and a severe shortage of a trained workforce to deliver PC to those in need.

Study 10: French et al. [16]

Authors identified four essential themes related to the concept of candidacy.

Identifying needs

While more visits occurred in socially deprived London boroughs, EOL care quality was perceived as lower in the most deprived areas compared to the least deprived ones. There was no evidence of class-based differences in attitudes toward hospice care. However, patients from “working class” backgrounds felt that general practitioners had less time to engage in conversation, although no socioeconomic differences in general practitioners’ PC training were found.

Taking action

Access to needed care is influenced by the capabilities of patients, families, and healthcare providers. Evidence suggests that socioeconomically disadvantaged groups may have fewer informational resources to secure care. Families play an important role, as carers’ educational qualifications—particularly holding a degree—affect PC access more significantly than household income. Navigating care effectively often depends on having a highly educated, younger care advocate. For patients and carers experiencing disadvantage, requests for care may sometimes go unheard.

Local organization

Disadvantaged social classes often assume access to a hospice bed when dying, highlighting resource scarcity. Local context plays a role, as some regions with higher social deprivation have areas located over 30 min from a hospice, revealing inconsistent accessibility across the country. The time spent under hospice care varies regionally, with longer average durations in the Midlands and South compared to the North, which is more disadvantaged.

Frequent utilization of hospital services, particularly emergency care at the EOL, is consistently associated with socioeconomic disadvantages. Patients facing financial hardships and those who paid for health services were more likely to be frequent primary care attendees in their last year of life.

Study 11: Javanparast et al. [17]

The authors identified six key themes related to equity in PC policies: identifying groups with poor access to PC, strategies to improve access, collaboration and community engagement, addressing social determinants, equity-focused research, and evidence gaps. Although some health system collaborations were noted, significant gaps remained in partnerships with non-health sectors. Community engagement was limited, and the implementation of proposed strategies for equitable access was not widely observed. Interviews revealed diverse perspectives on equity-focused PC and highlighted the need for financial investment and knowledge expansion. Enablers identified included community advocacy, education, and technology, while barriers included workforce gaps, fragmented care systems, and insufficient funding.

Study 12: Rosa et al. [18]

The authors analyzed country-specific narratives based on each nation’s documented PC development level. In Bangladesh, although PC services are supported in the National Operation Plan, the Ministry of Health has not prioritized their development. Infrastructure challenges impede the effective delivery of essential medicines, with PC services primarily concentrated in Dhaka, leaving rural areas as opioid deserts. Out-of-pocket expenses contribute to financial strain, and PC is absent from medical curricula. In Colombia, PC interventions are covered by the national health system, but inconsistent communication limits access, particularly outside major cities. In Egypt, PC development is hampered by lack of government recognition, knowledge gaps, and restricted opioid availability. Sudan faces stockouts, lack of representation, and government hesitancy to integrate PC. Uganda permits nurse-prescribed morphine, yet structural barriers limit access. Zambia’s lack of PC education and investment affects service provision.

Study 13: wong et al. [19]

Gender disparities in EOL care were evident across six key areas:

Living situation

Women, often widowed and living alone, had a higher prevalence of chronic diseases and pain. Lifelong gender inequities contributed to greater poverty, impacting their care options.

Symptom experience

Women consistently reported higher levels of pain, fatigue, and nausea, yet their symptoms were frequently under-treated. This under-treatment reflects societal beliefs about women and pain tolerance.

Care context

Women primarily received care from generalists, had shorter hospital stays, and were more likely to die in nursing homes. This pattern results from a combination of preferences for formal care and limited access to informal caregiving support.

Care preferences

Women were more likely to have “do not resuscitate” orders and to prefer PC over aggressive treatments, though they were less likely than men to receive early PC interventions.

Caregiving

Female caregivers bore greater burdens, often experiencing lower self-esteem and reduced financial support, highlighting societal expectations and biases regarding women as natural caregivers.

Coping strategies

Women tended to express needs more openly, communicated pain more effectively, and valued physical appearance as a form of control, whereas men were generally more stoic, independent, and focused on their partners for support.

Study 14: Marcewicz et al.[20]

Many articles discussed racial differences, particularly in topics related to quality (75%), hospice (53%), PC services (40%), and spirituality/religion (40%). Common explanations for these differences included patient choice, physician bias, and cultural barriers. While 65% of the articles approached racial differences as issues to address using principles from Critical Race Theory, 95% did not incorporate experiential narratives to form assumptions or explanatory models. Furthermore, only 11% included perspectives from people of color as data supporting these assumptions.

Synthesis of results

Contributors to inequity in accessing palliative care and end-of-life care services

The main contributors to inequity in accessing PC and EOL care services include: racial discrimination, gender discrimination, disparities among informal carers, geographic discrepancies, socioeconomic disparities, healthcare accessibility issues, and challenges in low-income countries (Table 2).

Addressing racial discrimination – key recommendations

• Understanding Diverse Backgrounds: It is essential for healthcare providers to be curious about the unique and intersecting cultural, social, and linguistic backgrounds of patients and families. This understanding fosters respect for diverse perspectives and preferences regarding health, care, and illness.

• Sensitivity to Treatment Preferences: The PC team should be attuned to the varied preferences for life-sustaining treatments and concerns about advance care planning expressed by patients and families.

• Incorporating Social and Cultural Factors: Social indicators, cultural backgrounds, linguistic preferences, care preferences, and perceptions should be included in all biopsychosocial assessments and treatment plans. This approach will help highlight the distinct needs of patients and families, facilitating better collaboration among PC team members.

Addressing gender discrimination – key recommendations

• Fostering Awareness of Personal Biases: PC professionals can play a vital role by recognizing their personal biases. By doing so, they can provide more effective support to patients and families while initiating critical care discussions that challenge and overturn unequal gendered expectations.

Addressing informal carers discrepancies – key recommendations

• Providing financial support to informal carers through benefits is a clear and effective strategy for alleviating their financial burden.

Addressing geographic discrepancies – key recommendations

• PC implementation models must be re-envisioned to reach individuals in their communities. Decentralizing inpatient palliative and EOL care services from urban centers can alleviate geographic access challenges in rural areas. This can be achieved by introducing non-institutionalized services, such as hospice-at-home programs, or by leveraging technology-enhanced care, including telehealth services and video conferencing.

Addressing socioeconomic discrepancies – key recommendations

• Health care providers need to enhance their capacity to recognize and address the impacts of social determinants of health in their delivery of PC. Building trust and respect within specific population groups is essential to this process.

• To advocate for equitable access to high-quality PC for underserved populations, PC team members must develop and advance policies that address treatment-related financial hardships and provide optimal support for individuals requiring temporary or long-term care, as well as their families and caregivers.

• There is a pressing need for more research in PC to examine and articulate structural vulnerabilities, addressing existing inequities and the underlying power structures that reinforce them.

Addressing health care accessibility – key recommendations

• A supportive policy and political environment for PC is essential for advancing equity-focused palliative and EOL care.

• Achieving equity-focused PC also necessitates meaningful community engagement and empowerment. This involves identifying and addressing social determinants of health inequity, including the non-health-related factors that contribute to poor access to and utilization of services.

Addressing difficulties in low-income countries – key recommendations

• The Ministry of Health should incorporate PC training into the curriculum for all internal medicine residents and ensure the integration of PC into the care of chronic noncommunicable diseases (e.g., in Rwanda).

• The Ministry of Health should also develop training programs for home-based care practitioners, equipping them to deliver both noncommunicable disease care and PC in home settings (e.g., in Rwanda).

Key barriers and enablers to equitable access to palliative care and end-of-life care services

Access to PC and EOL care services is critical for improving the quality of life for patients with serious illnesses and their families. However, numerous barriers hinder equitable access, while certain enablers can facilitate it.

Main barriers to equitable access

• a) Identification of patients who are dying:

One significant challenge in providing equitable access to PC and EOL care is accurately identifying patients who are nearing the EOL. Clinicians may struggle with recognizing the signs that indicate a patient requires palliative interventions, leading to delays in care. This misidentification can prevent patients from receiving timely and appropriate support, ultimately affecting their quality of life and EOL experience.

• b) The ‘survival imperative’:

The prevailing attitude in healthcare often emphasizes prolonging life at all costs. This “survival imperative” can overshadow the need for PC, as providers may focus more on curative treatments rather than addressing the suffering associated with terminal illnesses. This mindset can lead to inadequate referrals to PC services, leaving many patients without essential support during critical times.

• c) The ‘normalization of dying’:

In many societies, dying is seen as a natural part of life, leading to a reluctance to discuss or address death and dying openly. This normalization can result in underutilization of PC services, as patients and families may not seek assistance until they are well into the dying process. The cultural stigma surrounding discussions of death may hinder proactive engagement with PC options.

• d) Misconceptions, mistrust, and lack of information:

Many individuals may harbor misconceptions about PC, believing it is only for those who are imminently dying or that it signifies the abandonment of curative treatment. Additionally, a lack of trust in the healthcare system—particularly among marginalized populations—can lead to hesitance in seeking PC services. Mistrust may stem from historical injustices or systemic biases, further compounding the barriers to equitable access. Moreover, insufficient information about the benefits and availability of PC can deter patients and families from utilizing these essential services.

• e) Fragmented care system:

A fragmented care system can impede the continuity and coordination of care that patients require at the EOL. Poor communication between healthcare providers, inadequate integration of services, and inconsistent care pathways can lead to gaps in service delivery. This fragmentation can result in patients falling through the cracks and not receiving the comprehensive support they need.

Main enablers for equitable access

• a) Adequate patient evaluation:

Implementing thorough and systematic patient evaluations can facilitate timely identification of those who may benefit from PC and EOL services. Effective assessment tools and protocols can help clinicians recognize the needs of patients more accurately, ensuring that appropriate care options are presented early in the disease trajectory.

• b) Workforce education:

Educating healthcare providers about the importance and benefits of PC is crucial for improving access. Training programs that emphasize the holistic nature of PC, symptom management, and communication skills can empower clinicians to initiate conversations about EOL options with their patients. An informed workforce can also help combat misconceptions and biases surrounding PC.

• c) Addressing deficits in basic survival needs and social determinants of equity:

Ensuring that patients’ basic survival needs—such as access to food, shelter, and transportation—are met can significantly influence their ability to access PC services. Addressing social determinants of health, including economic stability, education, and social support, can help create a more equitable environment for accessing palliative and EOL care.

• d) Fostering intersectoral collaboration:

Collaboration between healthcare sectors, community organizations, and social services is essential for enhancing access to PC and EOL care. Building partnerships can facilitate resource sharing, improve care coordination, and address the various barriers that patients face in accessing services. Intersectoral efforts can also strengthen community advocacy initiatives, ensuring that the needs of underserved populations are met.

• e) Community advocacy and engagement:

Engaging communities in advocacy efforts can promote awareness and understanding of PC services. Community-led initiatives can empower individuals to seek care and challenge systemic barriers. Advocates can also play a crucial role in informing policymakers about the need for equitable access and advocating for changes in public health policies that prioritize PC and EOL services.

The key barriers and enablers to equitable access to PC and EOL care services are illustrated in Fig. 2.

Fig. 2

Barriers and enablers to equitable access to Palliative Care and End-of-Life services

Discussion

Summary of evidence

In this scoping review, we included 14 articles. Our findings indicate that ethnic/racial discrimination (n = 4) and geographical discrepancies (n = 4) are the primary contributors to inequities in accessing PC and EOL care services. Additional factors influencing equity in PC access included socioeconomic disparities (n = 2), gender inequities (n = 1), and challenges faced by informal carers (n = 1). Two articles addressed inequities in low- or middle-income countries, while one specifically focused on barriers to accessing PC services. Notably, half of the included articles originated from North America.

Several barriers impede high-quality PC for racial and ethnic minority adults, including provider-level obstacles such as communication challenges and perceptions of discrimination based on race or ethnicity. This suggests that a significant proportion of racial and ethnic minorities may experience subpar quality in their PC services [21].

When we consider the White experience as the ‘norm,’ it is essential to acknowledge the differences that exist among racial groups and actively seek input from individuals within these communities. Disparities in hospice enrollment among diverse patient populations present a complex issue that involves numerous interrelated barriers [22].

Clinicians often overlook the life experiences and historical inequities faced by minority patients [23], and racial biases can manifest at any level within the PC system.

In the context of various challenges such as homelessness, severe mental illness, substance use, and trauma, there is a pressing need for new and innovative approaches to care. These approaches should consider the social determinants of health and the factors influencing access to care.

Significant geographic variation exists in access to PC services [24]. Geographic access is a crucial factor in determining the place of death, with differing impacts in rural and urban areas.

Patients in both rural and urban settings who live more than 10 min away from hospices are less likely to die in hospice care compared to those within a 10-minute drive. Additionally, rurality is associated with an increased likelihood of dying at home [25].

Socioeconomically disadvantaged populations are more likely to receive hospital-based care at the EOL, and there is a lack of evidence regarding access to and utilization of services that could provide generalist PC in the community [26].

The costs of caring at the EOL are substantial, encompassing direct costs, carer time costs, and expenses related to employment. For individuals with limited financial resources, this often leads to relocation, food insecurity, or significant debt [27].

Gender disparities in EOL care are significant and can be mitigated by the involvement of PC professionals. The concept of providing more EOL care in the community may place an additional burden on women, who are often expected to take on caregiving responsibilities [28]. Furthermore, persistent inequities in pay and working conditions contribute to women having fewer financial resources compared to men.

Low- and middle-income countries face numerous challenges in providing PC and EOL care, including insufficient training and education for health professionals, limited access to opioids and essential medications for pain and symptom management, and difficulties in engaging decision-makers to prioritize PC policies. To promote the provision of PC in these countries, there is a need for knowledge and resource sharing among public officials and practitioners from high-income countries with established PC services. This collaboration should be guided by a commitment to global equity, considering local cultures, as the optimal application of PC may vary depending on the context [29]. Training efforts will only be effective if trainees have the opportunity to implement their new PC expertise as part of their official duties.

Despite facing less-than-ideal conditions, individuals who are structurally vulnerable deserve the highest quality of care at the EOL. PC providers must pay close attention to their lived realities, understanding how structural vulnerability and subsequent marginalization are amplified throughout a person’s life [30].

The main barriers to equitable access to PC include challenges in identifying patients who are dying, the “survival imperative,” and the “normalization of dying,” along with misconceptions, mistrust, and a lack of information about PC and EOL care, as well as a fragmented care system. Enablers for equitable access to PC involve adequate patient evaluation, workforce education, addressing basic survival needs and social determinants of equity, and fostering intersectoral collaboration, community advocacy, and engagement.[17].

Policymakers at all levels must heed the voices of PC advocates, recognizing the potential for measurable and sustained change in both the quantity and quality of PC services for patients, families, and communities. Advocacy efforts should focus on increasing educational resources in medical, nursing, social work, spiritual care, and pharmacy schools, ensuring the integration of PC content into curricula across disciplines, and guaranteeing that all health professionals graduate with generalist PC skills [18].

Strategies proposed to enhance equity for priority population groups include raising awareness and understanding of PC services, implementing flexible models of PC, employing members of diverse communities in distinct roles to provide PC, increasing funding and resources, enhancing care providers’ capabilities, and improving research and evaluation.[17].

As PC gains prioritization in health education, training community health workers and other dedicated individuals as PC assistants becomes a viable option to broaden service access and meet the holistic needs of patients experiencing health-related suffering and at the EOL.[18].

Strategic planning at institutional, local, regional, national, and international levels should involve all members of the PC team. This inclusive approach ensures that PC priorities are integrated across health and social care services to address individual and population health needs. It is also crucial for tackling challenges such as staff shortages, inadequate facilities, lack of equipment and medications, and insufficient education and training.[31].

Limitations

Our study has several limitations.

A limitation of this review is our restrictive search strategy, which included only the free terms “palliative care,” “hospice care,” “end-of-life care,” “equit*,” and “access*.” By not incorporating additional terms such as “diversity,” “inequality,” “inclusiveness,” or “inclusion,” we may have missed relevant literature addressing other aspects of equitable access to PC.

We did not perform backward citation searching (i.e., examining the reference lists of articles retrieved from the databases). As a result, some relevant literature on equity in accessing PC may not have been identified.

An additional limitation is our exclusion of studies focusing on specific disease sites. While intended to broaden the scope of our review, this approach may have limited insights into disease-specific challenges and nuances in PC access, potentially overlooking valuable findings relevant to equitable access for distinct patient populations.

The included studies employed varied methods, making comparisons and generalization challenging. The diverse range of countries with distinct healthcare systems, individual, cultural, ethical, and governmental values posed further challenges for comparisons and conclusions. Furthermore, the majority of articles were from North America, limiting the generalizability of the results.

Another limitation of this review is the absence of a critical appraisal of the included articles, which may affect the strength and reliability of our conclusions. Without a detailed quality assessment, our findings should be interpreted with caution, as the potential for bias within individual studies may influence the overall results and implications.

Conclusions

This scoping review identified ethnic/racial discrimination, geographical, and socioeconomic discrepancies as the primary contributors to inequity in accessing PC and EOL care services.

Future research should strive for more comprehensive and generalizable insights into the determinants of equitable access, considering contexts beyond the USA and the UK.

Achieving equity in PC is a complex and multifaceted endeavor that necessitates commitment and action at policy and governmental levels, as well as in clinical practice, workforce planning, capacity building, community engagement, and research investment. These efforts are essential for implementing and evaluating public health approaches to PC.