Models of palliative care for culturally and linguistically diverse people in high-income nations: A scoping review

Abstract

Background:

Access to palliative care remains uneven for people described, often variably and controversially, as culturally and linguistically diverse. Terminology and definitions differ across jurisdictions, shaping how models are designed, implemented, and reported. Evidence on model design and impact for people of culturally and linguistically diverse backgrounds is limited and heterogeneous.

Aim:

To map what is known about palliative care models for adults of culturally and linguistically diverse backgrounds in high-income nations, describing model components, reported outcomes, implementation influences, and gaps.

Design:

A scoping review was conducted, guided by the JBI manual and the PRISMA-ScR checklist.

Data sources:

In May 2024, MEDLINE, CINAHL, and Scopus were searched. Eligible publications described a palliative care model for adults of culturally and linguistically diverse backgrounds in high-income nations and reported evidence of utility. Letters, commentaries, editorials, protocols, reviews, and anonymously-authored publications were excluded. No limits on date, design, numbers, outcomes, or language were applied.

Results:

Five publications met the inclusion criteria. Four shared components were identified – culturally sensitive care, family and community engagement, interdisciplinary and community-based approaches, as well as education and empowerment – with reported benefits for patients and family members. However, the evidence-base was geographically narrow, with no explicit engagement with an intersectional analytic lens.

Conclusions:

This review indicates areas of apparent consensus about core components, while underscoring conceptual and evidentiary limitations. Future research should employ theoretically-informed, structurally-oriented, and co-produced approaches that clarify definitions and examine how models address intersecting disadvantages and organisational constraints to achieve equitable, scalable palliative care.

Keywords

palliative care chronic care model ethnic and racial minorities scoping review

Key Statements

What is already known about the topic?

Access to palliative care for people from culturally and linguistically diverse backgrounds is uneven, with significant variation in terminology and definitions across jurisdictions.

Evidence on palliative care models for people from culturally and linguistically diverse backgrounds is limited, heterogeneous, and often lacks conceptual clarity.

Few studies explicitly examine how structural inequities shape the design, implementation, or effectiveness of such models.

What this paper adds?

Identifies four commonly reported components of palliative care models for adults from culturally and linguistically diverse backgrounds: culturally sensitive care; family and community engagement; interdisciplinary and community based approaches; and education and empowerment.

Demonstrates that evidence of model utility is geographically narrow and concentrated within a small number of settings.

Highlights the absence of intersectional analyses and limited engagement with system-level mechanisms that influence model adoption and effectiveness.

Implications for practice, theory, or policy?

Clarifying definitions and conceptual framings is essential to designing equitable and scalable palliative care models for diverse populations.

The field would benefit from theoretically-informed and structurally-oriented approaches that account for intersecting forms of disadvantage and organisational constraints.

Co-produced research and model development might strengthen cultural relevance, improve implementation, and enhance responsiveness to community needs.

Introduction

Palliative care is becoming increasingly important for many health systems worldwide.^1–3 Palliative care is “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering.”⁴ Its growing importance follows (at least) three reasons. First, the need for palliative care is rising,⁵ partly due to ageing populations⁶ and the rising prevalence of chronic health issues.⁷ Second, regardless of why an individual requires palliative care, limited access to it can have personal, social, and economic implications. Personally, it can compromise quality of life, generate psychological distress, as well as increase morbidity and mortality.⁸ Socially, limited access to palliative care can exacerbate the burden of care and strain personal relationships.⁹ Economically, it can warrant greater access to health and mental health services among patients and family members, adding to rising healthcare costs^10,11 – this is because service use can be inappropriate and/or untimely. Third, access to palliative care is not uniform across populations. For instance, understandings about, access to, and use of palliative care are limited among people of culturally and linguistically diverse backgrounds^12–16 – this can compromise experiences with healthcare and quality of life for patients and family members. One way to improve experiences with healthcare and quality of life might be to implement models of palliative care¹⁷ that meet the needs and preferences of people of culturally and linguistically diverse backgrounds.

Although there is some evidence on the models of palliative care that are likely to benefit people of culturally and linguistically diverse backgrounds,¹⁸ five interrelated issues warrant mention. First, relevant studies tend to be nation-specific,^19,20 such as those focused on Australia,²¹ New Zealand,²² and Hong Kong.²³ Second, they typically fail to consider different forms of benefit, sometimes focused on stakeholder perspectives²⁴ or economic impact.^25–27 Third, they do not always consider how models of palliative care might be adapted for people of culturally and linguistically diverse backgrounds²⁸ – for instance, a study about an outpatient model excluded “Patients. . . unable to respond to questions in English,”²⁹ thereby limiting an understanding of whether and how people of culturally and linguistically diverse backgrounds engaged with the model. Fourth, there is limited recognition of the structural determinants that can shape who receives what care and on what terms.^30,31 While inequities in palliative care are frequently attributed to cultural and linguistic difference, structural racism, embedded in policies, institutional practices, and everyday clinical routines, can cause disparities in communication quality, symptom management, intensity of end-of-life treatment, and concordance with patient preferences, thereby challenging culturalist explanations alone.³² These inequities are (re)produced through institutional arrangements and power asymmetries in clinical encounters, where interactions with racially minoritised patients are less person-centred and often shaped by historical and ongoing racialisation, with tangible consequences for care experience and outcomes.³³ Moreover, the dominance of Western biomedical norms in palliative care, including assumptions about individual autonomy, idealised decision-making pathways, and what constitutes a “good death,” operate as tacit standards that can marginalise diverse values and family roles, reinforcing structural bias within service design and evaluation.^34,35 These structures intersect with broader socioeconomic constraints, including those tied to migration, citizenship, and geographic or policy-driven barriers to essential medications and services, further delimiting eligibility and access across populations.^33,34 Collectively, this evidence suggests that palliative care inequities are patterned by systems of power that shape models of care from conception through delivery and appraisal, underscoring the need to move beyond cultural adaptation, towards strategies that confront and transform structural drivers of inequity – examining models of care through this broader equity lens allows for a more nuanced understanding of how inequities emerge and the extent to which interventions address the structural drivers underpinning them. Fifth, relevant literature suggests incredible heterogeneity regarding what constitutes people of culturally and linguistically diverse backgrounds,^36,37 a model of care,³⁸ and outcomes associated with these models of care.³⁹ For instance, following their review of relevant literature, Pham et al.⁴⁰ concluded, “There was considerable inconsistency in how CALD [culturally and linguistically diverse] status was defined.” Correspondingly, Abdi et al.⁴¹ asked, “Is it time to retire the label ‘CALD’ in public health research and practice?” Regarding models of palliative care, Ohana et al.⁴² referred to these as “frameworks,” without explaining them, while Finn and Malhotra⁴³ described “Models of Palliative Medicine Delivery,” including inpatient, outpatient, and community-based palliative care, without defining what is (and is not) a model of palliative care.

Despite the opacity that surrounds understandings of models of care,⁴⁴ one point is apparent – they are processual. That is, a model of care is not represented by a single assessment, treatment, or intervention, but rather, it is progressive. As the Agency for Clinical Innovation⁴⁵ observed, “A ‘Model of Care’ broadly defines the way health services are delivered. . . for a person, population group or patient cohort as they progress through the stages of a condition, injury or event.”

Given inequitable access to palliative care among underserved populations, a scoping review was conducted to describe the models of palliative care for people of culturally and linguistically diverse backgrounds in high-income nations. The phrase, culturally and linguistically diverse, was purposely used to reflect discourse in Western nations, such as Australia, thereby aligning with policy and service planning^46,47 – yet it is an administratively-constructed category that aggregates populations with markedly different migration trajectories, faith traditions, socioeconomic positions, and experiences of racialisation. As such, this phrase can obscure internal diversity and inadvertently position difference as a deficit located within communities rather than within health systems. Recognising these limitations is critical for interpreting how models of care (fail to) address the needs of varied groups subsumed under this label. The focus on adults in high-income nations aided comparability. A scoping review was appropriate given the heterogeneity regarding the population and concepts of interest. Specifically, and as noted, there are no universal understandings of what constitutes: people of culturally and linguistically diverse backgrounds; a model of care; or outcomes associated with these models of care. As such, although relevant academic databases were systematically searched, a scoping review was required “to clarify working definitions and conceptual boundaries of a topic or field. . . [given the] complex or heterogeneous nature of the focus.”^48,49 Accordingly, the purpose of this scoping was “not. . . to produce a critically appraised and synthesised result/answer to a particular question. . . [but] rather. . . to provide an overview or map of the evidence”⁴⁸ – as such, this scoping review describes, rather than interrogates the evidence-base. A preliminary search of PubMed was conducted and no current review on the topic was identified.

Method

Review question

This review addressed the following question: what models of palliative care were available for adults in high-income nations of culturally and linguistically diverse backgrounds? Furthermore, the following sub-questions were addressed: what were the key components of these models; who was involved; did the models largely represent a cultural adaption, or did they serve to address structural determinants that minoritised particular people; what were the associated outcomes and impact; and what helped or hindered the models?

Review design

Guided by the JBI manual for evidence synthesis⁵⁰ as well as the preferred reporting items for systematic reviews and meta-analyses extension for scoping reviews (PRISMA-ScR) checklist,⁵¹ a protocol was published, following blind peer review.⁵² Search strategies were developed and tested to identify publications on: models of palliative care, as the concept of interest; and adults of culturally and linguistically diverse backgrounds, as the population of interest. To ensure that publications reported on studies conducted in high-income nations, as the context of interest, this criterion formed part of the screening and full-text review processes, rather than the search strategies.

Search strategy

For the purpose of this review, a model of care was defined as per the aforesaid definition of the Agency for Clinical Innovation,⁴⁵ and palliative care, as per the aforesaid definition of the World Health Organization.⁴ As such, a model of palliative care was here defined as the way palliative care services are delivered for a person, population group, or patient cohort as they progress through the stages of a life-threatening illness, to improve their quality of life and that of their families, through the prevention and relief of suffering. Given the various terms used to denote models of care, the search strategies used to identify relevant publications were necessarily expansive (see Table 1). Nevertheless, the search strategies potentially excluded relevant publications described using alternative terms, such as service redesign or framework. Given the different settings in which palliative care can be delivered, context was broadly defined to include acute, secondary, tertiary, and community-based care. The population of interest – adults of culturally and linguistically diverse backgrounds – encompassed people aged 18 years and over: who were categorised as refugees, asylum seekers, and/or immigrants from a nation where the dominant language differed from that spoken in the nation where the study was conducted; or who demonstrated four or more of the following variables,⁵³ as defined by the Australian Bureau of Statistics⁵⁴: nation of birth; father’s nation of birth; mother’s nation of birth; ancestry; religious affiliation; year of arrival to the nation in which the study was conducted; proficiency in the dominant language of the nation where the study was conducted; first language spoken, which differed from that spoken in the nation where the study was conducted; and the main language spoken at home, which differed from that spoken in the nation where the study was conducted. The context of interest – high-income nations – denoted those 80 nations defined as such by the World Bank.⁵⁵

Table 1.

Search strategies.

Database (platform)	Search string
MEDLINE (OVID)
Palliative care	(“Palliative care”/or exp hospices/or exp “life support care”/or exp “terminally ill”/) or (Palliat* or hospice* or “life support care” or “terminally ill” or “advance care planning” or bereavement or “terminal care”).ti,ab. or ((dying or death or “end of life”) adj6 (imminen$ or nearing or “last day” or “last week” or “last hour” or “final day” or “final week” or “final hour” or “critical pathway*”)).ti,ab.
Model of care	(exp “delivery of health care”/or exp “community health planning”/or exp “health care reform”/or exp “decision making, organizational”/or exp “planning techniques”/or exp “health services needs and demand”/or exp “healthcare disparities”/) or (“delivery of health care” or “delivery of healthcare” or “health care delivery” or “health care delivery” or “healthcare delivery” or “community health planning” or “health care reform” or “healthcare reform” or “organisational decision making” or “organizational decision making” or “organisational decision-making” or “organizational decision-making” or “planning techniques” or “health services needs and demand” or “healthcare disparities”).ti,ab. or (model* adj3 (care or health or healthcare)).ti,ab. or (planning adj3 (health or healthcare)).ti,ab.
Culturally and linguistically diverse backgrounds	(“Cultural Characteristics”/or exp “Cultural Diversity”/or “Culturally Competent Care”/or “Emigration and Immigration”/or “Ethnic and Racial Minorities”/or Ethnicity/or Ethnology/or “Minority Groups”/or “Minority Health”/or “Transients and Migrants”/or “Racial Groups”/or Refugees/or Multilingualism/or exp “cross-cultural comparison”/or exp acculturation/) or (Cultural* or Emigration or Immigration or Ethn* or “Racial Minorit” or “Minority Group” or “Minority Health” or Transients or Migrant* or “Racial Group” or Refugees or Multilingualism or “cross-cultural comparison” or acculturat or multicultur* or transcultur* or pluralism or diaspora* or emigrant* or immigr* or “asylum seeker” or “displaced person” or “displaced people” or multilingu or bilingu* or “non English speak” or “non-English speak” or CALD or refugee* or BAME or “Black and Asia Ethnic Minorit”).ti,ab. or ((multi or bi or divers) adj2 (language* or lingu*)).ti,ab.
CINAHL (EBSCOhost) ^a
Palliative care	(MH “Palliative care”) OR (MH hospices) OR (MH “life support care+”) OR (MH “Terminally Ill Patients+”) OR ((TI Palliat* OR AB Palliat) OR (TI hospice OR AB hospice) OR (TI “life support care” OR AB “life support care”) OR (TI “terminally ill” OR AB “terminally ill”) OR (TI “advance care planning” OR AB “advance care planning”) OR (TI bereavement OR AB bereavement) OR (TI “terminal care” OR AB “terminal care”)) OR (((TI dying OR AB dying) OR (TI death OR AB death) OR (TI “end of life” OR AB “end of life”)) N6 ((TI imminen? OR AB imminen?) OR (TI nearing OR AB nearing) OR (TI “last day” OR AB “last day”) OR (TI “last week” OR AB “last week”) OR (TI “last hour” OR AB “last hour”) OR (TI “final day” OR AB “final day”) OR (TI “final week” OR AB “final week”) OR (TI “final hour” OR AB “final hour”) OR (TI “critical pathway” OR AB “critical pathway*”)))
Model of care	(MH “Health Care Delivery+”) OR (MH “Health Facility Planning+”) OR (MH “health care reform+”) OR (MH “decision making, organizational”) OR (MH “planning techniques+”) OR (MH “health services needs and demand+”) OR (MH “healthcare disparities”) OR ((TI “delivery of health care” OR AB “delivery of health care”) OR (TI “delivery of healthcare” OR AB “delivery of healthcare”) OR (TI “health care delivery” OR AB “health care delivery”) OR (TI “health care delivery” OR AB “health care delivery”) OR (TI “healthcare delivery” OR AB “healthcare delivery”) OR (TI “community health planning” OR AB “community health planning”) OR (TI “health care reform” OR AB “health care reform”) OR (TI “healthcare reform” OR AB “healthcare reform”) OR (TI “organisational decision making” OR AB “organisational decision making”) OR (TI “organizational decision making” OR AB “organizational decision making”) OR (TI “organisational decision-making” OR AB “organisational decision-making”) OR (TI “organizational decision-making” OR AB “organizational decision-making”) OR (TI “planning techniques” OR AB “planning techniques”) OR (TI “health services needs and demand” OR AB “health services needs and demand”) OR (TI “healthcare disparities” OR AB “healthcare disparities”)) OR ((TI model* OR AB model*) N3 ((TI care OR AB care) OR (TI health OR AB health) OR (TI healthcare OR AB healthcare))) OR ((TI planning OR AB planning) N3 ((TI health OR AB health) OR (TI healthcare OR AB healthcare)))
Culturally and linguistically diverse backgrounds	(MH Culture+) OR (MH “Cultural Diversity+”) OR (MH “Cultural Competence”) OR (MH “Emigration and Immigration+”) OR (MH Racialization) OR (MH “Ethnic Groups+”) OR (MH Ethnology) OR (MH “Minority Groups+”) OR (MH “Minority Stress”) OR (MH Migrants) OR (MH Refugees+) OR (MH Multilingualism) OR (MH “Ethnological Research”) OR (MH Acculturation) OR ((TI Cultural* OR AB Cultural) OR (TI Emigration OR AB Emigration) OR (TI Immigration OR AB Immigration) OR (TI Ethn OR AB Ethn) OR (TI “Racial Minorit” OR AB “Racial Minorit”) OR (TI “Minority Group” OR AB “Minority Group”) OR (TI “Minority Health” OR AB “Minority Health”) OR (TI Transients OR AB Transients) OR (TI Migrant OR AB Migrant) OR (TI “Racial Group” OR AB “Racial Group”) OR (TI Refugees OR AB Refugees) OR (TI Multilingualism OR AB Multilingualism) OR (TI “cross-cultural comparison” OR AB “cross-cultural comparison”) OR (TI acculturat OR AB acculturat) OR (TI multicultur OR AB multicultur) OR (TI transcultur OR AB transcultur) OR (TI pluralism OR AB pluralism) OR (TI diaspora OR AB diaspora) OR (TI emigrant OR AB emigrant) OR (TI immigr OR AB immigr) OR (TI “asylum seeker” OR AB “asylum seeker”) OR (TI “displaced person” OR AB “displaced person”) OR (TI “displaced people” OR AB “displaced people”) OR (TI multilingu OR AB multilingu) OR (TI bilingu OR AB bilingu) OR (TI “non English speak” OR AB “non English speak”) OR (TI “non-English speak” OR AB “non-English speak”) OR (TI CALD OR AB CALD) OR (TI refugee OR AB refugee) OR (TI BAME OR AB BAME) OR (TI “Black and Asia Ethnic Minorit” OR AB “Black and Asia Ethnic Minorit”)) OR (((TI multi OR AB multi) OR (TI bi OR AB bi) OR (TI divers OR AB divers)) N2 ((TI language OR AB language) OR (TI lingu OR AB lingu*)))
Scopus ^a
Palliative care	TITLE-ABS(Palliat* OR hospice* OR “life support care” OR “terminally ill” OR “advance care planning” OR bereavement OR “terminal care” OR ((dying OR death OR “end of life”) W/6 (imminen? OR nearing OR “last day” OR “last week” OR “last hour” OR “final day” OR “final week” OR “final hour” OR “critical pathway*”)))
Model of care	TITLE-ABS(“delivery of health care” OR “delivery of healthcare” OR “health care delivery” OR “health care delivery” OR “healthcare delivery” OR “community health planning” OR “health care reform” OR “healthcare reform” OR “organisational decision making” OR “organizational decision making” OR “organisational decision-making” OR “organizational decision-making” OR “planning techniques” OR “health services needs and demand” OR “healthcare disparities” OR (model* W/3 (care OR health OR healthcare)) OR (planning W/3 (health OR healthcare)))
Culturally and linguistically diverse backgrounds	TITLE-ABS(Cultural* OR Emigration OR Immigration OR Ethn* OR “Racial Minorit” OR “Minority Group” OR “Minority Health” OR Transients OR Migrant* OR “Racial Group” OR Refugees OR Multilingualism OR “cross-cultural comparison” OR acculturat OR multicultur* OR transcultur* OR pluralism OR diaspora* OR emigrant* OR immigr* OR “asylum seeker” OR “displaced person” OR “displaced people” OR multilingu OR bilingu* OR “non English speak” OR “non-English speak” OR CALD OR refugee* OR BAME OR “Black and Asia Ethnic Minorit” OR ((multi OR bi OR divers) W/2 (language* OR lingu*)))

Polyglot⁵⁶ was used to translate the search strategy of title and abstract fields.

Data sources

On May 5, 2024, the search strategies were deployed via MEDLINE (using OVID), CINAHL (using EBSCOhost), and Scopus, given their relevance. Although conducted in May 2024, the search identified publications that were in press and therefore published after this date. All identified records were: exported from the databases into EndNote⁵⁷; imported into Covidence⁵⁸; and independently screened by two reviewers, guided by the inclusion criteria – discrepancies were reconciled with another reviewer. The full-text of potentially relevant records was then independently reviewed by two reviewers, guided by the inclusion criteria – the reasons for excluding full-text publications that did not meet the inclusion criteria were noted. Discrepancies were once again reconciled with another reviewer.

Inclusion criteria

Publications were eligible for inclusion if they: presented a model palliative care for adults of culturally and linguistically diverse backgrounds in high-income nations; included evidence, broadly defined, about the utility or otherwise of the model to exclude mere descriptions of a model; did not represent a narrative letter, a commentary, an editorial, a protocol, or a review of literature, given the limited methodological and empirical detail typically included about specific studies to establish the utility, feasibility, or implementation of the model of care; and were not anonymously authored. The reference lists of reviews relevant to the focus of this scoping review were screened to identify additional publications; however, no such reviews were identified. To optimise inclusiveness, publications were included irrespective of publication date, study design, participant numbers, outcome measure(s), and language – when a publication was not published in English, a free, online translation service was used to translate the publication.

Data analysis

Data from all included publications were extracted by two independent reviewers using a data extraction tool that the reviewers developed. The data included: a description of the model; the key components; what it involved; the associated outcomes and impact; and the factors that helped or hindered the model. Discrepancies were reconciled with another reviewer. The following section presents a narrative account of the findings.

Results

Characteristics of the included publications

From the 3,200 records initially identified, five publications were included in this scoping review (see Figure 1). This pattern of attrition offers insight into the current maturity and conceptual coherence of the evidence-base. Many records were excluded at the screening stage as they did not present a model palliative care for adults of culturally and linguistically diverse backgrounds in high-income nations – this perhaps reflects the heterogeneity and lack of terminological consistency in this area of research. This reduction of eligible publications highlights a relatively underdeveloped and diffuse evidence-base in which relevant research is often described using varied or ambiguous language, limiting comparability and synthesis. Consequently, the small number of included publications should be interpreted as an indicator, not only of limited empirical development in this field, but also of broader conceptual fragmentation that constrains cumulative knowledge building.

Figure 1.

PRISMA flowchart of screening and selection.⁵⁹

The five eligible publications were published from 1995 to 2022, inclusive (see Table 2). All the publications reported on studies conducted in the United States of America, with the number of participants ranging from 1 to 351. These participants largely included people with a Latin American background and migrants from Asia and the Pacific Islands who lived with a life-limiting illness. Participant ages ranged from 21 to 94 years, when indicated. All but one publication⁶⁰ included both male and female participants. The study designs reported in the publications included: a case study⁶⁰; a randomised control trial^61,62; the prospective collection of data⁶³; and a cross-sectional study.⁶⁴ The studies were conducted in hospitals,^60,61,64 patient homes,⁶³ clinics,⁶² or a combination of settings.⁶¹

Table 2.

Included publications.

Publication	Model	Model development	Theoretical or conceptual underpinnings	Participants	Sample	Participant age (years)	Gender	Context	Mechanism to address inequity	Benefits	Shortcomings
Beechem⁶⁰	Culturally-sensitive treatment plan in pre-hospice	Iterative through case conferencing	Hospice philosophy; learned helplessness	Hispanic woman	1	21	Female	Hospital	Cultural accommodation	Better family relationships; improved communication between patients and clinicians; enhanced patient wellbeing	Nil
Fischer et al.⁶¹	Apoyo con carino (support with caring)	Adaptation of a patient navigator model	Freeman’s patient navigator model	Latinos with advanced medical illness	64	Mean: 57 Range: Not indicated	Female: 42 Male: 22	Home, clinic, and hospital	Cultural adaption	Greater advance care planning; greater documentation of pain management discussions	Nil
Fernandes et al.⁶³	Home-based palliative care	Expansion of a physician home-visit programme to a structured home-based palliative care programme	World Health Organization palliative care goals; health equity orientation	Low-income, Asian and Pacific Islander migrants	46 patients 45 carers	Range: 27–94 Median: 71	Female: 26 Male: 20	Patient homes	Expanding access	Enhanced patient wellbeing; improved carer satisfaction	Nil
Fischer et al.⁶²	Apoyo con carino (support with caring)	Adaptation of a patient navigator model	Freeman’s patient navigator model	Latinos with advanced cancer	223	Mean: 58.1 Range: Not indicated	Female: 124 Male: 99	Clinics	Cultural adaption and advocacy	Enhanced patient wellbeing; greater advance care planning	Absence of an effect on pain management, hospice use, overall quality of life, or aggressiveness of care
Patel et al.⁶⁴	Supportive care	Adaptation of palliative care consultations	Not explicitly indicated	Seriously ill Hispanic patients	351	Mean: 72.16	Female: 191 Male: 160	Hospital	Cultural adaption	More conversions to a do-not-resuscitate status	Nil

Models of palliative care

The models of palliative care largely aimed to enhance culturally sensitive palliative care. Towards this aim, the publications reported on: how patient and family member cultural preferences regarding care were considered^60,64; as well as how patients and family members were supported via a model that served to: aid service navigation^60–62; promote home-based palliative care⁶³; and provide a consultation service.⁶⁴

Key components of the models

Collectively, the models depicted in the five publications involved four components. The first – culturally sensitive care – involved adapting service delivery to respect the cultural needs and preferences of each patient. For instance, Beechem⁶⁰ presented a case study, demonstrating how hospice philosophy was adapted to meet cultural needs, emphasising patient uniqueness. Similarly, Fernandes et al.⁶³ as well as Fischer et al.⁶² incorporated culturally tailored approaches, such as using native-language speakers and patient navigators to address oversights in care.

The second component – family engagement and communication – was illustrated in publications, like that authored by Beechem,⁶⁰ in which patients and family members were involved in palliative care as one unit. For instance, Patel et al.⁶⁴ described structured communication strategies to guide sensitive conversations about prognosis and goals of care.

The third component – interdisciplinary and community-based approaches – saw the involvement of different stakeholders to address patients’ and family members’ changing needs and preferences. For instance, Beechem⁶⁰ outlined a hospice model involving emotional support, pain control, and an interdisciplinary team approach; Fernandes et al.⁶³ described a model that encompassed various practitioners, including outreach workers, as well as local pastors; and Patel et al.⁶⁴ detailed team meetings and coordinated rounds, where roles were assigned based on patient needs and cultural considerations.

The fourth component – education and empowerment – was used to manage barriers as well as empower patients and family members. This was demonstrated in the publications about models that included culturally tailored messaging, home visits and educational materials.^61,62 Patient navigators, or trained laypersons, had a key role in activating patients to seek improved care and understand their options. These efforts aim to build trust, enhance understanding of palliative care, and support informed decision-making.

Who was involved

Reflecting the third component – interdisciplinary and community-based approaches – the models often involved different stakeholders. They variably included teams comprised of hospital staff, social workers, family members, physicians, nurses, case managers, psychologist pastors, interpreters, volunteers, and chaplains.^60,63,64 While two publications did not report on an interdisciplinary approach, they noted that the model they described required the involvement of patient navigators.^61,62 Despite the recognised importance of family members in palliative care,⁶⁵ only one publication explicitly recognised family members as members of the team.⁶⁰

Associated outcomes and impact

Despite the shared aim of the models – to largely enhance culturally sensitive palliative care – the publications reported on disparate outcome measures. For instance, some focused on patient experience and wellbeing at the end-of-life – these included: Beechem⁶⁰ who emphasised the importance of dying with dignity and cultural integrity, highlighting the need for care that respects personal values and identity; and Fernandes et al.⁶³ as well as Fischer et al.⁶² who assessed symptom relief and quality of life. Others considered advance care planning and decision-making.^61–63 These measures included the documentation of care preferences, discussions about pain management and changes in code status,⁶⁴ such as transitions from full code to do-not-resuscitate orders. Such indicators reflect the importance of proactive, informed decision-making in end-of-life care. Health service use was also considered, including hospice care, hospitalisation, emergency department visits, and the length of hospice stay.^61–63 Conversely, inappropriate service use was considered; specifically, “chemotherapy within 14 days of death, no hospice use, or ⩽3 days of hospice use before death.”⁶² While family members have an important role in palliative care,⁶⁵ none of the publications reported on the use of family satisfaction and involvement as an outcome measure.

The reviewed models of palliative care revealed a range of benefits, highlighting the value of culturally responsive approaches. These included better family relationships,⁶⁰ improved communication between patients and clinicians,⁶⁰ enhanced patient wellbeing,^60,62,63 improved carer satisfaction,⁶³ greater advance care planning,^61,62 greater documentation of pain management discussions,⁶¹ as well as more conversions to a do-not-resuscitate status.⁶⁴ Only one publication spoke of shortcomings associated with the model of palliative care – namely, the absence of an effect on pain management, hospice use, overall quality of life, or aggressiveness of care.⁶²

What helped or hindered the models

According to the authors of some publications, the implementation of the models of palliative care were aided by several factors. These included: context, whereby greater rapport was apparent when patients were visited at home, rather than the hospital⁶¹; as well as a team approach to home visits, rather than those by a lone provider,⁶³ and family meetings.⁶⁴

None of the publications explicitly reported on factors that hindered model implementation. For instance, they did not explicitly engage with intersectionality, generally operationalising the models of care at the interpersonal or programmatic level, with references to – for example – “staff. . . listening skills,”⁶⁰ “outreach workers who speak the commonly used native languages,”⁶³ and “a palliative care training module.”⁶⁴ Comparatively limited attention was awarded to organisational or system-level levers, such as policy or funding. Moreover, ethnicity or language difference was commonly the primary analytic axis, with limited disaggregation or analysis by socioeconomic position, migration status, gender, housing insecurity, mental health, diagnosis, or geography.^61,62 Thus, few publications assessed whether the identified components mitigated intersecting forms of disadvantage or, conversely, shifted the burden of navigating complexity back onto individuals. Where studies hinted at structural concerns (e.g., access barriers, institutional mistrust, fragmented services), these were typically described rather than evaluated within model design or outcomes frameworks.⁶⁴

Methodological limitations

While the five publications largely demonstrated the value of culturally appropriate models of palliative care, they also noted methodological limitations that potentially compromised research quality. These included low rates of participant acceptance,⁶¹ inconsistent data collection processes,⁶³ the potential for contamination in the study design,⁶² limited power to detect differences, a failure to adjust for multiple primary outcomes, and an inability to discern causality.⁶⁴

Discussion

Main findings

This scoping review described models of palliative care designed for adults of culturally and linguistically diverse backgrounds in high-income nations. Although only five publications met the inclusion criteria – all of which presented studies solely conducted in the United States of America – four components were identified across the models. These were: culturally sensitive care; family and community engagement; interdisciplinary and community-based approaches; as well as education and empowerment. While these components were sourced from studies conducted in one nation, potentially limiting their relevance to other contexts, they largely reflect those found in models of palliative care that are not specific to people of culturally and linguistically diverse backgrounds,^17,66,67 which can involve multidisciplinary teams, patient-centred care that is responsive to patients and family members, spiritual care, and patient education. Yet their application in culturally and linguistically diverse contexts reflects a tailored approach that addresses the needs of people of culturally and linguistically diverse backgrounds.

Reflecting Siouta et al.’s⁶⁸ observations, the models represented in this review demonstrated a commitment to individualised care, attending to physical, emotional, social, and spiritual dimensions. This was demonstrated by the use of native language speakers,^61,62 strategies to accommodate cultural needs and nuances,⁶⁰ the use of local pastors,⁶³ as well as culturally tailored material and messaging.^61,62 Importantly, these components helped to mitigate the barriers known to hinder timely access to palliative care among people of culturally and linguistically diverse backgrounds – these barriers can include language and communication challenges, limited health literacy, and differing cultural beliefs about death and dying.⁶⁷ As such, the models largely supported equitable palliative care for people of culturally and linguistically diverse backgrounds.

The five publications described models of care that drew on various organisational approaches to palliative care.³⁹ These included multidisciplinary models involving diverse stakeholders,^60,63,64 integrated care models,^60,64 and culturally safe practices.^61–63 This diversity suggests that no single organisational model adequately addresses the needs of people of culturally and linguistically diverse backgrounds. Instead, a hybrid model, incorporating elements from multiple organisational frameworks, might be better suited to meeting their palliative care needs.

Given the diverse palliative care approaches presented in this review, it is important to distinguish incremental practice adaptations from system-level changes. Practice-level adjustments, such as more flexible approaches to communication, service navigation, or family involvement, might improve care experiences within specific encounters. Yet the review suggests that such adaptations are insufficient in isolation. Structural inequities are embedded within organisational arrangements, funding models, referral pathways, and policy frameworks that shape who can access palliative care and when. Meaningful progress towards equity, therefore, requires coordinated system-level reforms to support, rather than rely on clinician capacity to adapt their practice.

While the five publications are informative, two limitations of the evidence-base are noteworthy. First is the limited explicit engagement with intersectional perspectives. Although the publications acknowledged multiple, overlapping determinants, such as limited English proficiency, low health literacy, poverty, functional status, and immigration-linked barriers,^60–64 these intersections were not explicitly theorised as interlocking systems of power and oppression shaping access, experience, and outcomes of palliative care. Intersectionality, originating in Black feminist legal scholarship,^69,70 urges analysis beyond single-axis categories – such as culture or language – to examine how social locations – such as ethnicity, gender, class, immigration status, and disability, among others – mutually constitute vulnerability and privilege through broader structures – such as racism, sexism, xenophobia, and economic policy, among others. In public health, intersectionality has been advanced as a critical framework precisely because conventional approaches, however well-intended, often silo minoritised peoples, obscuring how identities and structures interact to produce inequities.⁷¹

The second limitation is the limited expressed critique of culturally sensitive care. Culturally sensitive care has been critiqued for its primary focus on clinician knowledge and behaviours, often without sufficient attention to the structural determinants of inequity in healthcare.⁷² Cultural competence frameworks can inadvertently essentialise culture or locate responsibility for inequitable care at the level of individual interaction, rather than within broader contexts.⁷³ The findings should therefore be interpreted as highlighting how participants’ experiences are shaped by intersecting cultural, structural, and systemic factors. Greater attention to structural competency, institutional responsibility, and power relations in healthcare systems might be required to meaningfully address these disparities.

What this study adds

This review contributes to the evidence supporting culturally appropriate palliative care. It highlights the tangible benefits that these models can offer to people of culturally and linguistically diverse backgrounds who require palliative care and their family members. These benefits include strengthened family relationships,⁶⁰ more effective communication between patients and clinicians,⁶⁰ enhanced patient wellbeing,^60,62,63 increased carer satisfaction,⁶³ improved engagement in advance care planning,^61,62 better documentation of pain management discussions,⁶¹ and a higher incidence of transitions to do-not-resuscitate status.⁶⁴

Despite the aforesaid promising outcomes, there remains a need for consensus on which benefits are most critical and how they should be measured. If culturally appropriate models of palliative care are to be institutionalised within established palliative care services, the associated benefits must be clearly articulated to strengthen the business case to service managers and planners. Establishing clear and consistent outcome indicators will be essential to evaluate and refine models of care that are tailored to people of culturally and linguistically diverse backgrounds.

Furthermore, this scoping review underscores the importance of developing a shared language around both cultural and linguistic diversity and models of care, as the absence of universal terminology poses a barrier to research and implementation. While this review adopted a broad definition of cultural and linguistic diversity, many of the publications that were screened provided insufficient detail on the people involved in the study, resulting in their exclusion. Consider, for instance, a study that involved “White” people, “African American”, people and “Other” people, who were not defined.⁷⁴ Similarly, despite the inclusive way that a model of care was defined,⁴⁵ many publications were excluded from this review because they focused on a single assessment, treatment, or intervention. One publication, for instance, reported on the assessment of the palliative care needs of the Mayotte population,⁷⁵ while another reported on an intervention for people requiring palliative care.⁷⁴ Given these observations, and as others have noted, it would be helpful for future research to clearly define cultural and linguistic diversity^36,40 as well as models of care.^38,44

Strengths and limitations

The strengths of this scoping review are threefold. First, by focusing on an under-researched area – namely, the intersection of palliative care and cultural diversity in high-income nations – the findings illuminate disparities in care access, quality, and outcomes for people of culturally and linguistically diverse backgrounds. Second, because the review was guided by the JBI manual for evidence synthesis⁵⁰ as well as the PRISMA-ScR checklist,⁵¹ it is methodologically robust. Third, the broad inclusion criteria, comprehensive search criteria, and use of different databases served to comprehensively map the evidence.

Despite the strengths of this scoping review, four methodological limitations warrant acknowledgement. First, the terminological and definitional choices likely shaped the search yield and synthesis. While relevant terms, such as “model of care” (and its variants), were prioritised to enhance clarity and comparability, these can be applied inconsistently across jurisdictions, disciplines, and publication databases; therefore, relevant publications describing similar practices using different terms or definitions might not have been retrieved. Consequently, the findings should be interpreted as mapping a subset of the evidence-base, rather than the full spectrum of models of palliative care for culturally and linguistically diverse people in high-income nations. Second, although culture- and language-responsive strategies were reported, the review did not explicitly apply an intersectional analytic lens. The included publications and synthesis foregrounded ethnicity and language while offering limited disaggregation by socioeconomic position, migration status, gendered caring roles, disability and mental health, housing insecurity, diagnosis, or geography. This single-axis emphasis risks over-attributing inequities to cultural and linguistic factors and under-specifying structural drivers. Third, English translations of non-English records could not be independently verified, introducing potential misinterpretation. Fourth, journal interest in positive outcomes⁷⁶ might bias the findings reported in this review and, by extension, the conclusions drawn here. Collectively, these choices and constraints indicate that the review best supports cautious, bounded inferences about the components commonly reported in the models of care, while underscoring the need for future research that: uses clearer, standardised descriptors; examines organisational and system-level levers alongside interpersonal and programmatic elements; and integrates intersectionality to illuminate how palliative care models operate for people positioned at multiple, intersecting margins.

Conclusion

This scoping review identified four core components across palliative care models for people of culturally and linguistically diverse backgrounds – namely: culturally sensitive care; family and community engagement; interdisciplinary and community-based approaches; and education and empowerment. These components can offer meaningful benefits to patients and their family members. Yet the limited number of publications – all originating from the United States of America – highlights a significant gap in the global evidence-base. The evidence was situated within a specific organisational, funding, and policy context that shaped how palliative care was accessed and delivered. Thus, the four aforesaid components might not readily translate to systems of universal health coverage – unlike that of the United States of America.⁷⁷ As such, careful adaptation to local health system structures, policy environments, and population needs is, therefore, essential when considering their application elsewhere. Moreover, the identified publications tended to operationalise the models of care primarily at the interpersonal or programmatic level, focusing on communication skills, navigation support, or culturally tailored information, rather than on the broader organisational or structural factors that can shape access and equity in palliative care.

A notable gap in the evidence-base concerns the absence of an explicit intersectional analytic lens. The publications largely framed inequity through a single axis of culture or language, with limited consideration of how ethnicity interacts with socioeconomic position, housing insecurity, or geography. This can have important implications for how models of care are interpreted: identifying more models, without interrogating how they redistribute power or remove systemic barriers, is unlikely to meaningfully alter entrenched inequities.

Future research in this field would benefit from adopting theoretically-informed and explicitly intersectional approaches that examine how multiple forms of marginalisation can shape patient experiences and outcomes. There is also a need for structurally-oriented studies that evaluate system-level determinants of equity, such as policy or funding, alongside patient-level outcomes. Co-produced research involving communities, carers, clinicians, and service leaders might help to ensure that models of care are responsive to local contexts and better positioned for sustainable implementation. Comparative and realist approaches might further illuminate the mechanisms through which interventions work, for whom, and in which settings, advancing current understandings of how culturally and structurally responsive care can be embedded within mainstream services.

Finally, the absence of universal terminology for cultural and linguistic diversity and models of care remains a barrier to synthesising and advancing this field. Clarifying definitions and developing consistent descriptors will facilitate more robust evidence generation and allow clearer mapping of “What works for whom, where, why, for what, and when.”⁷⁸ Strengthening the conceptual and structural foundations of future research is required to institutionalise equitable, culturally appropriate palliative care within health systems, internationally.

Footnotes

Acknowledgements

The authors acknowledge the assistance of the Palliative Care Research Collaboration.

ORCID iD

Ann Dadich

Ethical considerations

As a scoping review, the approval of a human research ethics committee was not required.

Author contributions

AD and CL conceived and led the review. AD, CL and JE developed the protocol. AD, CL, GR and CO screened the records. All authors contributed to the full-text review. GR and CO extracted the data. AD wrote the Introduction and Method sections. AD, GR and CO synthesised the extracted data and reported on the findings. CL and AD wrote the Discussion section. All authors reviewed and approved the final version of the manuscript.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: the review formed part of the Palliative Care Research Collaboration, funded by The Hospital Research Foundation Palliative Care (THRF Group Grant 2021-S-01-PallCare-QA25288); and CO is supported by a University of Adelaide scholarship.

Declaration of conflicting interests

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

Data availability statement

The data can be sourced from the included publications.

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