Indigenous Peoples' Experiences in Palliative and End‐of‐Life Care in Canada: A Scoping Review

ABSTRACT

Aim

This scoping review aimed to explore what is known about Indigenous peoples' experiences with palliative and end‐of‐life care in Canada.

Design

A scoping review.

Data Sources

A systematic search was performed from database inception to May 2022: CINAHL, Academic Search Complete, ERIC, Cochrane, Medline, PsychINFO, Indigenous Collections, Indigenous Peoples of North America and EMBASE. No date limitations were applied. Unpublished and grey literature was searched using the Google search engine. A search update was conducted in April 2024.

Methods

This scoping review was conducted in accordance with the Joanna Briggs Institute methodology for scoping reviews. Titles, abstracts and full text were screened for inclusion by two reviewers. Mapping and thematic analysis were used to analyse, collate and summarise extracted data.

Results

Fifty‐three sources were included in the review. While the methods, locations and context vary across the literature, common themes emerged: Disparities in Indigenous representation in palliative and end‐of‐life care literature, challenges in accessing palliative and end‐of‐life care, priorities related to palliative and end‐of‐life care and experiences specific to end of life.

Conclusions

This scoping review revealed several key insights into Indigenous peoples' experiences with palliative and end‐of‐life care.

Impact

Findings identify the need to enhance cultural safety in palliative and end‐of‐life care and support community capacity to develop and lead palliative and end‐of‐life care research and initiatives. Furthermore, findings suggest the need for palliative and end‐of‐life care initiatives that are Indigenous‐led, grounded in Indigenous research methods and distinctions‐based.

Reporting Method

We have adhered to relevant EQUATOR guidelines. We followed the PRISMA‐Scr in the reporting of this scoping review.

Patient or Public Contributions

No patient or public contribution. This study did not include patient or public involvement in its design, conduct or reporting.

Summary.

• What already is known

  • ○
    The World Health Organization identifies access to palliative care as a fundamental human right.
  • ○
    Indigenous people experience significant health disparities related to palliative and end‐of‐life care.
  • ○
    For Indigenous people worldwide, access to quality palliative and end‐of‐life care has become an increasingly pressing priority.
• What this paper contributes to the wider global community

  • ○
    This review highlights disparities in access to culturally safe palliative and end‐of‐life care for Indigenous people.
  • ○
    This paper highlights a lack of distinctions‐based palliative and end‐of‐life care literature. Of particular note, there is an absence of literature that describes Métis health and wellness in palliative and end‐of‐life care.
  • ○
    This review highlights a lack of palliative and end‐of‐life care initiatives and literature that are Indigenous‐led and grounded in Indigenous methodologies.
• Implication for practice/policy

  • ○
    This review urges healthcare providers and health systems to proactively enhance the cultural safety of palliative and end‐of‐life care provided to Indigenous people.
  • ○
    This review highlights that there is a need to support Indigenous‐led palliative and end‐of‐life care initiatives.
  • ○
    This review highlights that there is a need for tailored approaches to palliative and end‐of‐life care that recognise self‐determination and the unique identities of Indigenous nations.

1. Introduction

Indigenous people of Canada consist of three distinct groups: The First Nations, Métis and Inuit people (Government of Canada ²⁰²⁴). Access to palliative and end‐of‐life care (PEOLC) is an urgent global health priority for Indigenous peoples (Health Canada ²⁰¹⁹; Shahid et al. ²⁰¹⁸). An absence of culturally safe practices and existing health disparities have a detrimental effect on Indigenous people with life‐limiting illnesses (Schill and Caxaj 2019). The World Health Organization (2002) defines palliative care as ‘an approach that improves the quality of life of patients and their families facing the problems associated with life‐limiting illness’ (84). The term end of life refers to a person's last hours, days, weeks or months of life during which time it is medically evident that death is inevitable and cannot be avoided (Health Canada ²⁰¹⁹). Palliative care is provided before the end‐of‐life stage, through end of life, and continues afterwards, providing family and caregivers with bereavement supports (Health Canada ²⁰¹⁹). Although Canada is recognised as an international leader in palliative care, disparities in access to palliative care remain problematic for Indigenous people (Bourassa et al. 2018). To better understand the current context of Indigenous health and wellness, it is necessary to explore PEOLC from the perspectives of Indigenous people.

2. Aim

The purpose of this article is to present the findings of our scoping review, which broadly explored what is known about Indigenous peoples' experiences with PEOLC in Canada.

2.1. Authors Self Location

Self‐locating is a necessary element of accountable and ethical inquiry (Absolon and Willett 2005). We begin by introducing ourselves and our positioning within this work. Author 1: I am Métis on my mother's side and settler German on my father's side. My Métis family names include Henderson, Taylor, Monkman, Whitford, Thompson and Spence (among several others throughout history). My family left the Red River Settlement in the late 1800s and settled near Victoria Settlement on what is now known as Treaty 6 territory in Alberta, Canada. I am a Registered Nurse, and my passion lies in palliative care and community‐based initiatives that honour the hopes, vision and priorities of community. Author 2: I am a Black African woman from Cameroon. I currently reside in Edmonton, which is found in Treaty 6 Territory and within the Métis homelands and Métis Nation of Alberta Region 4. I come with a lot of respect for this land. I trained as a Registered Nurse in Cameroon and have worked as an educator and researcher for over 15 years. I am passionate about research that improves access to palliative care for underserved populations with life‐limiting conditions, especially those in resource‐limited settings. Author 3: I am of Latin American descent and to my knowledge my ancestors come from Spain, Brazil and Chile. A large part of my family on my mother's side is from Valparaiso, Chile, a historical seaport declared World Heritage Site in 2003. Chile was colonised by the Spaniards in the early 1500s and became a republic in 1810. Thus, my upbringing was influenced by colonial systems, a military dictatorship and a history of oppression of Indigenous peoples. I am a Registered Nurse in Canada with a background in health equity and palliative care. I have had Indigenous cultural training in Canada.

3. Methods

3.1. Design

A scoping review methodology was used to explore what is known about Indigenous Peoples' experiences with PEOLC in Canada. Scoping reviews are a form of knowledge synthesis utilised to map existing evidence, evaluate the breadth of literature, identify knowledge gaps and analyse the research on a particular topic (Tricco et al. 2018; Khalil et al. ²⁰²¹). The findings from scoping reviews can contribute to the advancement of knowledge in a given field, inform the development of research agendas and pinpoint areas necessitating further systematic reviews (Peters‐Micah et al. ²⁰²⁰). The scoping review methodology was deemed appropriate for our inquiry question, as it enabled a comprehensive exploration of existing knowledge on the topic and facilitated the identification of knowledge gaps. This scoping review was conducted in accordance with the Joanna Briggs Institute (JBI) methodology for scoping reviews (Peters‐Micah et al. ²⁰²⁰). The PRISMA (Preferred Reporting Items for Systematic Reviews and Meta‐Analyses) flowchart was used for reporting the different phases of searching (Tricco et al. 2018). The ‘PCC’ mnemonic (population, concept and context) was used as a guide to formulate a strong and meaningful scope of inquiry in terms of population, concept and context of the review (Peters‐Micah et al. ²⁰²⁰). Using the PCC tool, the population of interest in this review is Indigenous people, the concept is their experiences with PEOLC, and the context is Canada.

3.2. Search Methods

The search strategy was developed in consultation with a University of Alberta Librarian (AV). We began this process by identifying key search terms and synonyms related to the identified population, concept and context (File S1). The final search strategy emerged through a combination of synonyms, appropriate truncation and the use of Boolean operators. The search strategies for EMBASE and Medline are presented in File S2. We searched the following databases: CINAHL, Academic Search Complete, ERIC, Cochrane, Medline, PsychINFO, Indigenous Collections, Indigenous Peoples of North America and EMBASE. Unpublished and grey literature was searched using the Google search engine, selected websites focused on Indigenous health and wellness and selected Canadian palliative care websites (File S3). Using key search terms, grey literature Google searches were limited to the first 50 results of each search as per the guidelines provided by the University of Alberta library (Dennet 2020). The initial search was conducted in May 2022. A search update was conducted in April 2024 to identify articles published after the initial search.

3.3. Inclusion and Exclusion Criteria

The inclusion and exclusion criteria were formulated to encompass both published and unpublished articles pertaining to the experiences of Indigenous people with PEOLC in Canada. Studies published in any language and using any study design were considered for inclusion. No date limits were applied. Literature that explored PEOLC experiences of both non‐Indigenous and Indigenous people jointly was excluded to avoid misrepresentation and overgeneralisation. Knowledge synthesis articles that examined Indigenous peoples' experiences with PEOLC across multiple countries, including Canada, or employed a search strategy without country‐specific limitations were included in the review. The inclusion and exclusion criteria for this scoping review and their rationale are presented in depth in File S4.

3.4. Search Outcomes

The initial search yielded 1141 search results. After duplicate citations were removed, a total of 1003 results were screened for relevant abstracts and titles. Following abstract and title screening, a total of 164 articles were retrieved for full‐text screening, resulting in 132 papers being excluded. Full text review of papers yielded 32 sources that met the inclusion criteria. Reference lists of included articles were screened, yielding an additional 4 articles. Additionally, 13 pieces of grey literature were identified. An updated search in March 2024 yielded 2 additional articles from database searches and 2 additional pieces of grey literature. In total, 53 sources met the inclusion criteria and were included in the review (Figure 1). An overview of included articles is presented in Table S1.

FIGURE 1.

Indigenous peoples' experiences in palliative and end of life care in Canada: Scoping review PRISMA diagram.

3.5. Data Abstraction

Data management began by importing article lists generated from database searches into Covidence, a web‐based systematic review manager that provides a platform for importing and independent screening of article records (Covidence 2024). Covidence tracks the collaborative screening of articles for knowledge synthesis (Covidence 2024). Using the Covidence software, articles were screened for inclusion by two reviewers (LW and NB). Data extraction was conducted by one reviewer (LW), who provided a descriptive summary of all data pertinent to the objectives of the scoping review. The data extraction chart included the author, year of publication, study concept, context (country of origin/setting), study population and sample size (where applicable), methodology, outcomes and key findings relevant to the scoping review question (Peters‐Micah et al. ²⁰²⁰). Mapping tables are in File S5.

3.6. Synthesis

The goal of synthesis in a scoping review is to describe the breadth of literature on a specific topic (Paré et al. 2015). The predominant data synthesis approaches for scoping reviews are mapping and thematic analysis (Khalil et al. 2021; Gottlieb et al. ²⁰²¹). Mapping provides a numerical analysis of the nature and extent of studies, facilitating the identification of research trends and the presence of knowledge gaps (Peters‐Micah et al. ²⁰²⁰; Gottlieb et al. ²⁰²¹). Thematic analysis serves to identify and report patterns and common themes within the collective data (Mak and Thomas 2022; Gottlieb et al. ²⁰²¹). In our scoping review, we used mapping and thematic analysis to analyse, collate and summarise extracted data. Articles were mapped in a data extraction table by location, year, participant group and methodology. Using thematic analysis, the primary author (LW) reviewed articles to extract prevalent ideas, concepts, and themes. The final themes were discussed and validated by all authors.

4. Findings

Our scoping review findings indicate that Indigenous PEOLC has been a topic of interest for over 20 years. The earliest citations identified in this review were published by the same author in 1999 (Kaufert 1999; Kaufert et al. ¹⁹⁹⁹). Most sources were published between 2001 and 2020 (39, 74%). The majority of included works focused on Indigenous PEOLC from a national or international perspective (24, 45%). The remaining sources focused mainly on Ontario (9, 17%), Ontario and Manitoba (5, 9%) and Saskatchewan (6, 11%). Other sources centred on Alberta (1, 2%), British Columbia (2, 4%), Nunavut (1, 2%), Quebec (1, 2%) and Nova Scotia (1, 2%). Included literature encompassed several types of publications, including research (25, 47%), knowledge synthesis articles (9, 17%), reports (3, 6%), resource manuals and guidelines (5, 9%), videos (5, 9%) and a course (1, 1%). Knowledge synthesis articles included three literature reviews (6%), one narrative review (2%), one integrative review (2%), one comprehensive review (2%), one meta synthesis (2%) and two scoping reviews (4%). No systematic reviews were identified. Areas of focus varied across included sources; 21 (40%) of the included publications focused specifically on end‐of‐life care, while 32 (60%) sources focused more broadly on PEOLC.

Diversity of experiences, perspectives and values vary greatly among Indigenous people and communities (Canadian Partnership Against Cancer [CPAC] ²⁰²²). While generalisations are not desirable, some common themes arose from this review that may reflect the shared experiences of Indigenous people in Canada. Thematic analysis of the included sources revealed four interconnected themes related to Indigenous peoples' experiences with PEOLC: (a) disparities in Indigenous representation in PEOLC literature; (b) challenges in accessing PEOLC; (c) priorities related to PEOLC; and (d) experiences specific to end of life. What follows is an in‐depth exploration of the themes.

4.1. Disparities in Indigenous Representation in PEOLC Literature

Our review uncovered a historical pattern of significant disparities in the representation of Indigenous people within PEOLC literature in Canada. For instance, our review revealed a lack of distinctions‐based approaches that account for the diversity of Indigenous people in Canada. The majority of included works took a pan‐Indigenous approach to exploring Indigenous PEOLC (30, 57%). 18 were focused on First Nations peoples (34%), four focused on Inuit experiences (8%) and only one focused on Métis experiences (2%). Of the sources that focused on First Nations people, most authors did not distinguish between First Nations communities (9, 50%). Of the sources that distinguished between First Nations communities, four (8%) articles focused on Cree and Ojibway people jointly, two focused on Ojibway people (4%), one on Mi'kmaq (2%), one on Anishinaabe (2%) and one on the Six Nations community (2%).

Our review also highlighted a lack of Indigenous‐led PEOLC initiatives. Most of the included articles were developed by non‐Indigenous authors (27, 51%) or were described as a collaboration between non‐Indigenous researchers and Indigenous communities (11, 30%). Collaborative efforts included community engagements and consultations, overseeing committees with Indigenous representatives, and participatory action research. Only 15 included sources were Indigenous‐led (28%). Several included works were publications resulting from two major collaborative PEOLC projects. Six (11%) articles described outcomes of the ‘Completing the Circle: End‐of‐Life Care with Aboriginal Families’ participatory action research project that took place in First Nations communities in Saskatchewan over 7 years. Eight (15%) of the included works related to the participatory action research project, Improving End‐of‐Life Care in First Nations that occurred in Ontario and Manitoba over a five‐year period.

Our review also demonstrated a significant lack of PEOLC research that leverages Indigenous research methodologies. The majority of the included articles employed Western research methodologies within an Indigenous context. Specifically, most of the research utilised Western methods such as participatory action (10, 5%), qualitative inquiry (10, 19%), quantitative techniques (2, 4%) and ethnographic approaches (2, 4%). Only one study leveraged an Indigenous research methodology (1%). Several authors of the included articles acknowledged the disparity in Indigenous representation within PEOLC literature. For instance, Koffman et al. (2023) emphasised the necessity for palliative care research grounded in decolonized methodologies that honours the diversity and distinctions of Indigenous peoples. Hanson (2010) and Koski et al. (2017) underscored the importance of employing meaningful and effective engagement methods with Indigenous communities to enhance the quality of Indigenous palliative care.

4.2. Challenges in Accessing PEOLC

The findings of our review highlighted specific challenges that Indigenous people encounter in accessing PEOLC. These challenges encompass health and access disparities, as well as culturally unsafe and discriminatory care practices. The following section delves into an exploration of these key themes.

4.2.1. Health and Access Disparities

Our review identified that Indigenous people experience significant health disparities in relation to PEOLC. For instance, Funnell et al. (2021) found that Indigenous patients were, on average, 8.8 years younger, had a higher prevalence of chronic diseases, and resided in lower‐income neighbourhoods compared to their non‐Indigenous counterparts. Furthermore, several included sources reported that Indigenous people face significant health disparities, such as late diagnoses, a higher burden of disease and shorter survival rates in comparison with the broader Canadian population (Schill and Caxaj 2019; Chan et al. ²⁰²⁰; Canadian Hospice Palliative Care [CHPCA] ²⁰⁰⁷; CPAC ²⁰²²; National Aboriginal Health Organisation [NAHO] ²⁰⁰²; Bablitz et al. ²⁰¹⁸).

Included works also highlighted that Indigenous people experience several disparities in access to PEOLC. For example, Chan et al. (2020) found that Indigenous participants experienced significant delays from the time of diagnosis to the initiation of palliative radiotherapy treatment compared to non‐Indigenous participants. Additionally, in the same study, only 43% of Indigenous participants received follow‐up care from radiation or medical oncology (Chan et al. 2020). Funnell et al. (2021) reported that, in comparison to non‐Indigenous study participants, Indigenous individuals spent more time in acute care during the last year of life, had higher rates of death in acute care settings, received fewer home care nursing and personal support care hours and were less likely to be seen by a palliative care physician.

Our review indicated that issues related to isolation, affordable housing and jurisdiction are unique barriers that impede equitable access to PEOLC for Indigenous people (NAHO ²⁰⁰²). For example, Johnston et al. (2013) highlighted that while the Canadian federal government holds responsibility for all Indigenous‐related issues and services, healthcare delivery falls under provincial jurisdiction. This incongruence in jurisdictional responsibility results in significant gaps in PEOLC funding and services for Indigenous communities (Johnston et al. 2013). As such, Indigenous people are often forced to leave their communities to access PEOLC services, which leads to challenges associated with extensive medical travel (Kelly and Minty 2007; Galloway et al. ²⁰²⁰). Several included articles revealed the substantial challenges faced by Indigenous peoples related to medical travel for PEOLC. These challenges encompass the financial burden of travel, the extensive distances required and the resultant isolation from their familial and community support networks (Caxaj et al. 2018; Funnell et al. ²⁰²⁰; Galloway et al. ²⁰²⁰; Hotson et al. ²⁰⁰⁴). Furthermore, some authors have underscored that the transition to an unfamiliar environment during a particularly vulnerable period is associated with significant psychological and emotional challenges. These include fear of being away from home, isolation from community, disconnection from language and culture and profound feelings of loneliness (Bablitz et al. 2018).

4.2.2. Culturally Unsafe and Discriminatory Care

Included works suggest that culturally unsafe PEOLC is a shared experience among Indigenous people (St Pierre‐Hansen et al. ²⁰¹⁰; Schill and Caxaj ²⁰¹⁹). For instance, numerous sources have revealed that Indigenous individuals accessing PEOLC within healthcare institutions are frequently subjected to standardised medical practices that diminish the significance of personal and cultural meanings (Baydala et al. 2006; St Pierre‐Hansen et al. ²⁰¹⁰; Schill and Caxaj ²⁰¹⁹). Shahid et al. (2018) found that inflexible hospital policies often restrict family members from gathering around their loved ones and from practicing essential prayers, traditions and ceremonies. Duggleby et al. (2015) highlighted that the pressure to engage in advance care planning discussions and document wishes on advanced directives frequently disrespects diverse Indigenous cultural values, beliefs and practices concerning end‐of‐life conversations and decision‐making. Overall, included sources have noted a detrimental misalignment between the values inherent in Western medicine and the cultural and spiritual practices that are vital to Indigenous peoples (Johnston et al. 2013). Furthermore, included sources point to frequent experiences of racism and discrimination in health care (Shahid et al. 2018; Chan et al. ²⁰²⁰; Funnell et al. ²⁰²¹; St Pierre‐Hansen et al. ²⁰¹⁰).

4.3. Priorities Related to PEOLC

The findings of our review highlight key priorities related to Indigenous people's experiences with PEOLC. These priorities include (a) support for local community capacity and (b) increased access to culturally safe care.

4.3.1. Support for Community Capacity

Included literature emphasised the importance of community ownership of palliative services to ensure the needs of clients, families and communities are adequately addressed (Schill and Caxaj 2019; Hanson ²⁰¹⁰). However, the literature indicates that securing the necessary human and material resources—such as training, supplies, equipment and programme funding—often poses significant challenges to achieving this goal (Castledon et al. 2010). Several authors advocate for the extension of capacity‐building initiatives to Indigenous communities to mitigate access issues and disparities in PEOLC (CPAC ²⁰²²). The included articles emphasised that providing local community funding and addressing resource shortfalls is essential for advancing PEOLC for Indigenous peoples (CHPCA ²⁰⁰⁷; Nadin et al. ²⁰¹⁸). Sources highlighted that new PEOLC initiatives and research must build upon the strengths, commitment and existing capacities of Indigenous communities (CHPCA ²⁰⁰⁷; Hordyk et al. ^2017b). Moreover, the sources underscored the importance of Indigenous communities taking an active role in leading, developing, and determining their health, housing and broader economic and social needs and priorities (Hampton 2007; Hampton et al. ²⁰⁰⁹; Kelley et al. ²⁰¹⁸). Additionally, they highlighted the necessity for Indigenous communities to oversee related research and administer programmes through their own institutions (Hampton 2007; Hampton et al. ²⁰⁰⁹; Kelley et al. ²⁰¹⁸).

Our review revealed several projects, workbooks, and resource manuals that have been developed to guide Indigenous communities in developing community‐based PEOLC programmes. For instance, the Wiisokotaatiwin Program is a programme available in Naotkamegwanning (A Great Lakes Nations in Ontario) for individuals whose wish is to be cared for at home. This programme has improved client experience and enhanced service integration by enabling many community members to receive their palliative care at home (Nadin et al. 2018). The Improving End‐of‐Life Care in First Nations (EOLFN) project was a 5‐year collaboration with First Nations communities in Manitoba and Ontario to build community‐based palliative care programmes and teams (Kelley 2010). Outcomes from this initiative included enhanced culturally relevant care, improved client experience, enhanced service integration and the ability for individuals to receive PEOLC in their home communities (Nadin et al. 2018; Kelley ²⁰¹⁰). Additionally, several workbooks, courses and resource guides have been developed for use by interested First Nations communities across Canada, which include information on resources for programme development, providing direct care, educational opportunities and how to engage with external partners (Kelley et al. 2018; Kelley ²⁰²³; Cancer Care Ontario n.d.; Fobister et al. ²⁰¹⁴; Prince ²⁰¹⁷). For instance, the Improving End‐of‐Life Care in First Nations Communities Research Team (2015) developed a workbook of research‐informed strategies for developing palliative care programmes in First Nations communities.

4.3.2. Increased Access to Culturally Safe Care

Findings from our review highlight the importance of increasing access to culturally safe PEOLC (Hampton 2007; Racine et al. ²⁰²²). Strategies for enhancing the cultural safety of PEOLC include (a) the integration of holistic perspectives in care, (b) improved communication processes and (c) healthcare provider education.

4.3.2.1. Holistic Perspectives

Several included articles highlighted the importance of holistic care to enhance culturally safe PEOLC (Duggleby et al. 2015; Hampton et al. ²⁰⁰⁹). Indigenous perspectives of holism, as described in included sources, include a broader definition of healing and caring which encompasses concepts such as balance, culture, relationships, spirituality, the role of family and community relationships and communication norms (Johnston et al. 2013). Included sources suggest that culturally safe palliative care approaches are those that empower cultural identity, knowledge and traditions (Schill and Caxaj 2019). For many First Nations, Inuit,and Métis people, dying and death move beyond a focus on the biomedical and physical processes and emphasise the persons' transition to the spirit world as a social and spiritual event to be honoured and celebrated as a collective (CPAC ²⁰²²). However, sources revealed that in healthcare settings, personal meanings of death, dying, grieving and care at end of life tend to be eclipsed by technical and rational biomedical frameworks of understanding (Baydala et al. 2006).

Several included works advocate for leveraging Indigenous teachings to guide healthcare providers in delivering holistic palliative and end‐of‐life care (PEOLC). For instance, Clark and Holtslander (2010) proposed the four directions of the Medicine Wheel as a framework for exploring assessment and intervention from a holistic perspective. Additionally, Anderson and Woticky (2018) discussed the Medicine Wheel and the Two Row Wampum teachings as Indigenous theoretical frameworks to navigate the complex space created by the interconnection of death. Included works suggest that engaging with individuals through an Indigenous holistic lens enables healthcare providers to recognise the wholeness of a person and understand health as a balance of the mind, body, and spirit. This approach encourages reciprocal relationships with individuals and their families and acknowledges the potential for self‐awareness, self‐responsibility, self‐determination and self‐healing inherent in all humans (Clark and Holtslander 2010; Anderson and Woticky ²⁰¹⁸). Some included sources also suggest that providing holistic, culturally safe care can be achieved by developing local palliative care programmes and ensuring the presence of Indigenous healthcare providers within healthcare settings (Prince and Kelley 2010; Hampton et al. ²⁰⁰⁹).

4.3.2.2. Culturally Safe Communication

Included literature points to several aspects of communication that can enhance culturally safe care. For instance, Hordyk et al. (2017a, 2017b) emphasised that being able to communicate in each person's language can enhance cultural safety. In Chan et al. (2020), 75% of participants did not speak English, so the use of interpreters was seen as a crucial part of culturally safe communication at end of life. Hampton et al. (2009) found that the use of technical medical language when referring to a loved one is perceived as culturally insensitive and indicative of a lack of compassion towards family members. Additionally, Kaufert et al. (1999) suggested that healthcare providers need to consider cultural nuances of ‘telling bad news’ (revealing diagnosis and prognosis) and consider cultural avenues for conflict management regarding end‐of‐life decision‐making. Specifically, included sources suggested that there is a need within the Canadian healthcare system to develop culturally safe advance care planning information and resources for use in community and hospital settings (CVH ²⁰¹⁹). Respectful and culturally safe lines of communication and decision‐making between healthcare providers and individuals and their families must be established (Hotson et al. 2004). The literature advocates for clinicians to defer to the individual, family and community to ensure a person's wishes are being honoured at end of life (Schill and Caxaj 2019).

4.3.2.3. Healthcare Provider Education

Included works emphasise that there is a need for all healthcare providers across Canada to have cultural safety foundational training as a part of their healthcare practices and continuous learning (CPAC ²⁰²²; Russell et al. ²⁰¹⁸). Developing education through a community lens and incorporating local Elders and knowledge holders into the planning and delivery of PEOLC cultural safety training is a key component of successful and relevant cultural safety education (Schill and Caxaj 2019). Specifically, included sources suggest that healthcare providers need to learn about Indigenous cultures and respect all cultural practices in their programmes and policies (Prince et al. 2019; Hampton et al. ²⁰⁰⁹). Furthermore, the literature suggests that healthcare providers need to recognise the importance of the care they are providing for both the person facing end of life, as well as their family members and community (Hampton et al. 2009; Bourassa et al. ²⁰¹⁸). Additionally, sources emphasise the critical importance of healthcare providers developing a deeper understanding and awareness of the legacy of colonial violence, the historical and ongoing experiences of racism and oppression, intergenerational trauma, and the profound impacts these experiences have on individuals, families and communities (Hampton et al. 2009).

Our scoping review revealed some initiatives that provide PEOLC cultural safety education to healthcare providers. Several organisations have developed educational tools and videos for healthcare providers to explore PEOLC through the shared stories of several First Nations, Inuit and Métis people (CVH n.d.‐a^, n.d.‐b^, n.d.‐c; First Nations University ²⁰²²; First Nations Health Authority ²⁰¹⁸; Pallium, n.d.). The Completing the Circle project was a 7‐year project conducted with First Nations communities in Saskatchewan which involved connecting with Elders and community members to create videos and presentations that raise awareness about culturally safe end‐of‐life care among non‐Indigenous healthcare providers (Hampton et al. 2011). Additionally, in consultation with Indigenous communities across Canada, CPAC (2022) published the ‘Beginning the Journey into the Spirit World’ report which provides healthcare provides insights into Indigenous perspectives on PEOLC.

4.4. Experiences Specific to End of Life

Our scoping review findings reveal distinct experiences of Indigenous peoples specifically related to end of life, including (a) the end‐of‐life journey, (b) preferences to die at home and (c) the final hours.

4.4.1. The End‐of‐Life Journey

Our review indicates that, despite their incredible diversity, Indigenous peoples share certain common elements of spirituality and worldview when it comes to end‐of‐life matters (Duggleby et al. 2015; Anderson and Woticky ²⁰¹⁸; CPAC ²⁰²²). For instance, Anderson and Woticky (2018) highlight that the absence of the word death in most Indigenous languages underscores how differently the end‐of‐life experience is viewed by Indigenous people. Sources reveal that while the colonial view frames death through a biomedical, linear and physical lens, Indigenous people view end of life as a sacred journey (Anderson and Woticky 2018; Hampton et al. ²⁰¹⁰; Duggleby et al. ²⁰¹⁵; Baydala et al. ²⁰⁰⁶; Waban Toop ²⁰²²). For instance, in one study, death was described as completing the circle, meaning that death is not an end to life, but simply a completion of the circle of life in this current space of living (Hampton et al. 2010; Duggleby et al. ²⁰¹⁵). Included works suggest that, for many, death is perceived as the transition of the spirit from this world, rather than merely the end of the physical body (Anderson and Woticky 2018). Several sources highlight that death is seen as an important and inevitable part of the life cycle (Waban Toop ²⁰²²; Duggleby et al. ²⁰¹⁵; Hampton et al. ²⁰¹⁰). Furthermore, the end‐of‐life journey is regarded as holistic, encompassing the physical, mental, emotional and spiritual dimensions of life, with the belief that dying well is deeply interconnected with living well (Anderson and Woticky 2018; Duggleby et al. ²⁰¹⁵; Baydala et al. ²⁰⁰⁶). For instance, in one study, an Elder shared that we can prepare for death and practice dying well in every moment of life by respecting and honouring everything in deep gratitude (Baydala et al. 2006). The included sources also emphasise that death holds deeply personal meanings and that being open to listening to these stories can broaden one's understanding as part of an ongoing process of discovering meaning (Baydala et al. 2006; Hampton et al. ²⁰¹⁰).

4.4.2. Preferences to Die at Home

Included works overwhelmingly highlight that Indigenous people prefer to die at home, within their communities and surrounded by their loved ones (Canadian Virtual Hospice [CVH] ²⁰¹⁹; CPAC ²⁰²²; Fruch et al. ²⁰¹⁶; Hotson et al. ²⁰⁰⁴; Kelley ²⁰¹⁰; Nadin et al. ²⁰¹⁸; Shahid et al. ²⁰¹⁸). In their study, Galloway et al. (2020) found that Indigenous people expressed a preference for care to be provided in their homes by a family member or trusted friend. Included sources also highlight the value of care providers with strong ties to the community. However, several authors have revealed that family and community members often feel inadequately equipped with the necessary knowledge and training to provide safe and effective PEOLC to a loved one at home (Prince et al. 2019; Hampton et al. ²⁰¹⁰; Improving End‐of‐Life Care in First Nations Communities Research Team ²⁰¹⁵; Kelly et al. ²⁰⁰⁹; Kelley ²⁰²³; Nadin et al. ²⁰¹⁸). Additionally, included works highlight that for many rural Indigenous communities, PEOLC is not readily available, and there is limited awareness of the services that can be locally accessed (Castledon et al. 2010; Caxaj et al. ²⁰¹⁸; CPAC ²⁰²²; Fobister et al. ²⁰¹⁴; Fruch et al. ²⁰¹⁶; NAHO ²⁰⁰²; Prince et al. ²⁰¹⁹).

Included literature emphasises that individuals, families, and caregivers need to comprehensive information on the options that are available to them and need access to education and resources on how to support a dying family member at home (Prince et al. 2019; Hotson et al. ²⁰⁰⁴). Our review revealed several resources that support communities and families to provide PEOCL to their loved ones. For instance, Cancer Care Ontario (n.d.) developed a tool kit which provides a First Nations, Inuit and Métis definition of palliative care, resources intended to help Indigenous families and communities develop capacity in palliative care, information to support decision‐making and planning at end of life and information to help caregivers care for their loved ones at home. Prince (2017) developed a resource manual that provides Indigenous healthcare providers, family and community members practical guidance and support on caring for people at the end of life. Fobister et al. (2014) developed a resource guide to support Indigenous people and their caregivers in rural and remote communities. In addition to caregiver and community education, included sources emphasise that Indigenous communities require enhanced resources such as home care services and intensive case management for clients with complex care needs, including timely access to equipment and medication when life expectancy is short (Improving End‐of‐Life Care in First Nations Communities Research Team ²⁰¹⁵).

4.4.3. The Final Hours

Several included sources emphasise that family presence at the time of death is important to many Indigenous people and communities (Kelly and Minty 2007). In one study, Elders shared that community gathering is an essential part of preparing for death when an Indigenous person is dying (Hampton et al. 2010). When possible, during the last hours of life, homes are often filled with an array of visitors, including family and friends (Hordyk et al. ^2017a). However, sources highlight that many Indigenous people are transferred to urban tertiary care facilities for end‐of‐life care, where they are isolated from the support of family and traditional practices surrounding death (Bablitz et al. 2018; Hampton et al. ²⁰⁰⁹; Russell et al. ²⁰¹⁸). In these situations, family members often have limited access to their loved ones who are at the end of life (Hordyk et al. ^2017a). Several authors suggest that when a person with a life‐limiting illness is in a healthcare facility, it is essential to support family visits and provide a sufficiently large spaces to accommodate extended family members at any time (Bablitz et al. 2018; Duggleby et al. ²⁰¹⁵). Furthermore, policies that limit the number of visitors, visiting hours, and lengths of visits need to be reconsidered (Hampton et al. 2010; Bablitz et al. ²⁰¹⁸). Additionally, once an Indigenous person has passed away, there are often cultural values that need to be considered (Kelly and Minty 2007). For instance, traditions and practices related to the care of a person's body after death vary by community and family (Kelly and Minty 2007). Ultimately, efforts that uphold and respect the wishes of individuals and their family in the last hours and into death need to be at the forefront of end‐of‐life care (Kaufert et al. 1999; Hordyk et al. ^2017a; Duggleby et al. ²⁰¹⁵). Additionally, the included works emphasise that a dying person can benefit from care provided through both Western and traditional lenses. Therefore, it is imperative that both options be made available to patients and their families (Hampton et al. 2010; CPAC ²⁰²²; Anderson and Woticky ²⁰¹⁸; Galloway et al. ²⁰²⁰).

5. Discussion

There have been several studies, articles, tools and reports developed over the past 20 years that focus on Indigenous experiences with PEOLC. This review identified 53 sources that address Indigenous PELOC. Although the methods, locations and context vary across the literature, there are common themes that have repeated over time, which include: disparities in Indigenous representation in PEOLC literature, challenges in accessing PEOLC, priorities related to PEOLC and experiences specific to end of life.

The findings from our review closely align with those highlighted in other reviews (CVH ²⁰¹⁹; Caxaj et al. ²⁰¹⁸; Duggleby et al. ²⁰¹⁵; Kelly and Minty ²⁰⁰⁷; Koffman et al. ²⁰²³; Racine et al. ²⁰²²; Schill and Caxaj ²⁰¹⁹; Shahid et al. ²⁰¹⁸). Consistent across all reviews is the recognition of significant diversity in perspectives and experiences regarding death and dying, barriers to accessing care, the importance of family and community in care and decision‐making and the necessity of enhancing cultural safety in care provision (CVH ²⁰¹⁹; Caxaj et al. ²⁰¹⁸; Duggleby et al. ²⁰¹⁵; Kelly and Minty ²⁰⁰⁷; Koffman et al. ²⁰²³; Racine et al. ²⁰²²; Schill and Caxaj ²⁰¹⁹; Shahid et al. ²⁰¹⁸). Moreover, the findings of this review are consistent with those of Caxaj et al. (2018), who emphasise the importance of recognising the strengths and diversity of communities when designing and implementing palliative care initiatives. Similarly, there is alignment with Racine et al. (2022), Schill and Caxaj (2019), and Shahid et al. (2018) in their acknowledgment of the need for health organisations to establish community partnerships and strengthen community capacity to deliver palliative care programmes effectively. What sets this scoping review apart, however, is its identification of disparities in Indigenous representation within the PEOLC literature. Specifically, this review highlights a lack of Indigenous‐led and distinctions‐based approaches, as well as research guided by Indigenous methodologies.

The findings from our review shed light on Indigenous Peoples' experiences with PEOLC within Canada. While the overarching themes identified in our review may be echoed in PEOLC research about other cultures and populations, the manifestation of these themes in the lived experiences of Indigenous people is distinct. Indigenous people in Canada have unique lived experiences that are deeply influenced by historic and ongoing experiences of colonial violence, cultural assimilation and racism and discrimination in all Canadian systems (Truth and Reconciliation Commission of Canada [TRCC] ²⁰¹⁵). As such, solutions for enhancing the quality of PEOLC for Indigenous people in Canada are also unique to Indigenous people.

Our review indicates significant implications for Indigenous PEOLC at both national and international levels. Similar to Canada, many countries around the world continue to grapple with the enduring impacts of historical and systemic discrimination, as well as human rights violations, against Indigenous peoples. These injustices have contributed to shared global patterns of social and health disparities, which extend into PEOLC (United Nations ²⁰⁰⁷; Shahid et al. ²⁰¹⁸). The World Health Organization (2025) identifies access to palliative care as a fundamental human right, emphasising that the global demand for such care will continue to rise alongside an aging population and increasing rates of chronic illness. For Indigenous peoples worldwide, access to quality PEOLC has become an increasingly pressing priority (Shahid et al. 2018). Therefore, it is imperative to explore and implement solutions aimed at improving the quality of PEOLC for Indigenous communities within both national and international frameworks. Specifically, these solutions include enhancing access to culturally safe PEOLC and addressing the notable gaps in Indigenous PEOLC research and initiatives. What follows is a discussion on these implications for practice.

5.1. Increased Access to Care That Is Culturally Safe

Our review reveals that Indigenous people need access to culturally safe PEOLC. The term cultural safety was first described in the 1990s by Dr. Irihapeti Ramsden and Māori nurses (Ramsden 2015). Cultural safety is ‘an outcome based on respectful engagement, which recognizes and strives to address power imbalances inherent in the health and social services system’ (Richardson and Murphy 2018, 9). The need for culturally safe care is underpinned by an extensive history of colonial violence against Indigenous People in Canada. For hundreds of years, colonial policies, such as the Indian Act and the residential school system, aimed to assimilate Indigenous peoples by prohibiting their cultural practices and languages (TRCC ²⁰¹²). These restrictions were enforced over many generations, leading to severe punishment for those who did not comply, and significant Intergenerational trauma (TRCC ²⁰¹⁵). To this day, Indigenous people in Canada report ongoing experiences of racism and discrimination in health care (National Collaborating Centre for Indigenous Health ²⁰²²). As such, is essential to provide culturally safe PEOLC that prevents the continued harm of Indigenous people.

Culturally safe care necessitates that individuals and their families have access to culturally congruent practices, supports and traditional services upon request (CPAC ²⁰²²; Hotson et al. ²⁰⁰⁴). Establishing culturally safe strategies consistently involves several key components, such as: supporting each person in engaging in cultural and spiritual practices; facilitating the involvement of patients and their families in care planning; ensuring family presence; providing access to a preferred location of care, such as at home or within the community; and promoting community ownership of services (Schill and Caxaj 2019; TRCC ²⁰¹⁵).

Indigenous cultural safety education for healthcare providers is a crucial strategy for enhancing the provision of culturally safe care (Churchill et al. 2017; TRCC ²⁰¹⁵). Healthcare providers should be well‐versed in the legacy of colonial harm and its impact on Indigenous peoples in Canada (TRCC ²⁰¹⁵). Furthermore, they should be educated to respect and value Indigenous health and healing practices and to appreciate the diversity of distinct Indigenous worldviews that shape care (Schill and Caxaj 2019; TRCC ²⁰¹⁵). Cultural safety education necessitates that healthcare providers engage in self‐reflection, critically examining their own biases, attitudes, assumptions, stereotypes and prejudices that may contribute to a lower quality of healthcare for Indigenous peoples (Curtis et al. 2019).

Cultural safety must be integrated into all levels of the healthcare system, necessitating the establishment of meaningful relationships between organisations and systems, as well as between individuals, families and healthcare providers (CHPCA ²⁰⁰⁷). To enhance culturally safe PEOLC, system‐level support is required for accountability and organisational transformation (Churchill et al. 2017). Future endeavours demand increased commitment from healthcare leadership, system‐wide involvement, the establishment of a more diverse workforce and the inclusion of Indigenous ways of knowing in health programme and facility planning (Johnston et al. 2013; Richardson and Murphy ²⁰¹⁸).

5.2. PEOLC Research and Health Initiatives

An essential step in providing quality PEOLC to Indigenous peoples is ensuring that palliative care research, programmes and initiatives are conducted in a manner that is congruent with Indigenous worldviews and experiences (Webber‐Pillwax ¹⁹⁹⁹; Peltier ²⁰¹⁸; Tuck and Yang ²⁰¹²). Findings from our review highlight the need for PEOLC initiatives that are Indigenous‐led, grounded in Indigenous research methodologies and distinctions‐based. What follows is a discussion of these implications for future Indigenous PEOLC research and initiatives.

5.2.1. Indigenous Led Initiatives

Our review reveals the need for PEOLC initiatives that are Indigenous led. Most of the literature included in our review was led by non‐Indigenous authors, researchers or organisations. While findings from these sources can provide some insight into Indigenous PEOLC, there are significant risks associated with initiatives that are not Indigenous led. These risks include misrepresentation, misinterpretation and the development of culturally irrelevant deliverables and outcomes (Ermine et al. 2004). Self‐determination is a primary principle of Indigenous ethical protocols in research (Hayward et al. 2021; UN ²⁰⁰⁷). Moving beyond community engagement and participation action, Indigenous‐led initiatives play a fundamental role in promoting reconciliation and community well‐being (Lambert 2014; Grande ²⁰¹⁵; TRCC ²⁰¹⁵). The results, outcomes and outputs of respectful Indigenous‐led initiatives will inform policy‐making and drive change within communities, organisations and governments. These initiatives will mitigate intercultural conflict, build trust, enhance social capacity and develop practical skills among Indigenous leaders and community members (TRCC ²⁰¹⁵).

Indigenous communities also need to be actively involved in leading and developing initiatives that address their health, social needs and priorities that are tailored to their unique visions, hopes, culture and context (UN ²⁰⁰⁷; Nadin et al. ²⁰¹⁸). A significant component of supporting community‐led endeavours is the necessity for government and health organisations to provide adequate funding to local communities for the development and sustainability of programmes (TRCC ²⁰¹⁵). Funding that supports ongoing programme sustainability is particularly important (Kelley et al. 2018).

5.2.2. Indigenous Research Methodologies

Our review findings suggest the need for more Indigenous PEOCL research that is grounded in Indigenous research methodologies. Only one (2%) of the included research studies used an Indigenous research methodology. The remaining studies applied Western research methodologies in an Indigenous context. The risks of using Western research methods in Indigenous inquiry are misrepresentation and the generation of culturally irrelevant or potentially harmful findings and outcomes (Clark and Holtslander 2010; Ermine et al. ²⁰⁰⁴). At the heart of this recognition is the need to challenge colonial ways of acquiring knowledge, particularly knowledge that is collected, analysed, published and taught through a Western lens about the ‘other’, the ‘colonised’, the ‘vulnerable’ Indigenous people of Canada (Hyett et al. 2019). A significant issue with Western research approaches is that many of them focus on damage‐centred aspects of Indigenous life as identified by external researchers, which perpetuates harmful representations of Indigenous communities (Wilson 2008; Tuck ²⁰⁰⁹). Damage‐centred research further marginalises and colonises Indigenous people by positioning them as subjects that need to be managed and transformed (Tuck 2009; Ermine et al. ²⁰⁰⁴). Furthermore, Western research methods establish the researcher as the ‘authority’, someone who conducts research on Indigenous people rather than for and with Indigenous people (Lambert 2014; Wilson ²⁰⁰⁸).

Alternatively, Indigenous research methodologies offer a culturally relevant approach to Indigenous inquiry because they are grounded in Indigenous ontology and epistemology (Archibald et al. 2019; Hart ²⁰¹⁰). A strong Indigenous research methodology affords the celebration of the uniqueness and glory of Indigenous cultures, while allowing for the critical examination of culturally relevant topics (Wilson 2008). Indigenous research methods offer a vision for restoring respect, balance and spirit to the end‐of‐life journey (Anderson and Woticky 2018). As such, the use of Indigenous methodologies is key to the decolonisation of PEOLC Indigenous research imperatives.

5.2.3. Distinctions‐Based PEOLC Initiatives

Our review findings highlight the need for distinctions‐based PEOLC initiatives. Most of the included sources in our review were pan‐Indigenous or focused on a small number of First Nations communities. There were limited sources that focused on PEOLC from the perspective of Inuit people and only one (2%) that was Métis specific. Furthermore, most included works took a generalised national or international lens on Indigenous people's experiences with PEOLC. The remaining studies were focussed mostly on Ontario, Manitoba and Saskatchewan. There were few sources that focused on Alberta, British Columbia, the Northwest Territories and the Eastern Provinces. These findings raise questions about adequate representation of Indigenous perspectives of PEOLC across Canada.

Indigenous people are incredibly diverse in their cultures, values, beliefs, world views and experiences (National Collaborating Center for Indigenous Health [NCCIH] ²⁰¹⁴). Distinction‐based approaches honour this diversity of identities, cultures, languages, customs, practices, rights and legal traditions of First Nations, Inuit and the Métis people, and their institutions and governance structures (UN ²⁰⁰⁷). By approaching palliative and end‐of‐life care (PEOLC) from the perspectives of distinct Nations, progress can be made in enhancing the quality of PEOLC provided to individuals and communities (Johnston et al. 2013). Future PEOLC initiatives that address the needs of specific Indigenous communities must be at the forefront of all efforts to improve PEOLC for Indigenous people in Canada. Furthermore, there is an urgent need for the collection of health data that accounts for the distinct experiences of First Nations, Inuit and Métis peoples (NCCIH ²⁰¹⁴).

Specifically, our review reveals a need for Métis‐specific PEOLC research and initiatives. Métis‐specific needs and priorities are largely excluded from health literature or represented only through a Pan‐Indigenous lens, which contributes to considerable underrepresentation and misrepresentation of Métis people (Lavallée 2023; La Vallee et al. ²⁰¹⁷). Métis people have a unique culture and history, making them distinct from First Nations and Inuit peoples. Métis people also have unique health needs and priorities, which require a focused attention (Métis National Council, n.d.). It is therefore crucial to create and implement culturally relevant Métis‐specific PEOLC programmes and research that address the unique needs of Métis people. To create effective health programmes for Métis individuals and to better advocate for the community's health and wellness needs, it is essential to first gain a comprehensive understanding of their health experiences (Métis Nation of Alberta ²⁰²³). Specifically, there is a need for deeper understanding of Métis experiences related to PEOLC (Métis National Council, n.d.; Métis Nation of Alberta ²⁰²³).

6. Limitations

A potential limitation of scoping reviews is the failure to conduct an exhaustive search (Peters‐Micah et al. ²⁰²⁰). To mitigate this limitation, a protocol that outlines the inclusion and exclusion criteria, objectives, concepts and methods was established prior to conducting our scoping review (Gottlieb et al. 2021). Additionally, unlike systematic reviews, scoping reviews do not tend to involve quality appraisal (Mak and Thomas 2022). There is a danger that the existence of studies rather than the quality of studies is used to draw conclusions (Peters‐Micah et al. ²⁰²⁰). Consequently, scoping reviews are not usually used as a final output to inform policy and practice due to the potential for bias (Peters‐Micah et al. ²⁰²⁰). Despite these limitations, the findings from this scoping review shed light on relevant components of Indigenous peoples' experiences with PEOLC.

7. Conclusion

Our scoping review explored Indigenous people's experiences with PEOLC in Canada. Our review has uncovered distinctive insights that can provide significant guidance for future initiatives in PEOLC. A key finding of this review is the identification of disparities in Indigenous representation within PEOLC literature. Implications for future PEOLC initiatives focused on Indigenous health and wellness include the necessity for enhanced efforts to increase cultural safety within PEOLC, as well as support for Indigenous community capacity to develop and lead PEOLC research and initiatives. Furthermore, the findings suggest the need for PEOLC initiatives that are Indigenous‐led, grounded in Indigenous research methodologies and distinctions‐based.

Author Contributions

Conception and design: L.W., A.S.S. Acquisition, analysis or interpretation of data: L.W., N.B., A.S.S. Drafting the original manuscript: L.W., A.S.S. Critically reviewing the manuscript: A.S.S., N.B. All authors agree to be accountable for all aspects of the work. L.W., A.S.S. and N.B. made substantial contributions to conception and design, or acquisition of data, or analysis and interpretation of data, involved in drafting the manuscript or revising it critically for important intellectual content; given final approval of the version to be published. Each author should have participated sufficiently in the work to take public responsibility for appropriate portions of the content and agreed to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Conflicts of Interest

The authors declare no conflicts of interest.

Supporting information

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Table S1.

Data Availability Statement

Data openly available in a public repository that issues datasets with DOIs.