Advance Care Planning in Indigenous Populations: A Scoping Review

Abstract

Background:

Advance care planning has proven to be beneficial to medical care as it elicits patient preferences at the end of life, yet Indigenous populations have low rates of participation.

Objective:

This gap map scoping review serves to assess the current literature regarding the prevalence of advance care planning and palliative care characteristics in Indigenous populations of North America and Oceania.

Design:

Articles were identified from searches performed in five databases spanning the period from 2013 to 2023.

Results:

Twenty-eight articles met the inclusion criteria, representing studies conducted in the United States (n = 15), Canada (n = 2), New Zealand (n = 7), and Australia (n = 4). The included articles varied in study design, comprising qualitative (n = 16), observational (n = 7), mixed method (qualitative and quantitative) (n = 4), and interventional (n = 1). Two major findings endorsed across studies were (1) a high frequency of family involvement in end-of-life decision making and (2) awareness of culturally unsafe end-of-life services, creating hesitancy and mistrust.

Conclusions:

These results map the gaps in the existing research literature exploring the needs and preferences of Indigenous peoples in end-of-life decisions, palliative care, and advance care planning while highlighting a paucity of known effective interventions for Indigenous people.

Keywords

advance end-of-life care Indigenous

Introduction

Advance care planning (ACP) is a process that allows patients to express their preferences for medical care when they are unable to speak for themselves. ACP is a beneficial, yet underutilized aspect of health care¹ that supports adults at any age or stage of health to ensure they receive medical care that is consistent with their values, goals, and preferences during serious illness.²

Health care providers can use ACP as a tool to facilitate patient autonomy. Patients who complete ACP are less likely to report concerns with physician communication and are more comfortable with what to expect.³ Conversely, poor quality of care at the end of life (EOL) can be attributed in part to a lack of ACP and discussions about preferences for care.⁴

Internationally, differences in terminology and the legality of ACP documentation are well known. Australia’s ACP documentation primarily takes the form of advance care directives, which are recognized under legislation (statutory) or common law (nonstatutory).^5,6 However, terminology differs by jurisdiction, and there is a lack of clarity regarding the legal standing of nonstatutory advance care directives. However, there remains growing support for standardizing and simplifying ACP and harmonizing legislation.⁶ In comparison, New Zealand’s health agency, Te Whatu Ora Health (TWOH), offers comprehensive patient-centered guides that explore EOL preferences tailored to cultural values (www.myacp.org.nz). They also offer ethnic specific guides such as Whenua ki te whenua for Māori and Tōfā Fetāla’i for Samoans. These guides include headings such as “What matters to me” and “How I make decisions” to spark discussion and expand upon personal Indigenous values.

In the United States, only about 30% of adults had an advance directive in 2017.¹ This is also true in Australia, where a retrospective medical record audit among people with chronic diseases found that only 2.8% of the records had an advanced care directive, 3.9% had an enduring guardian, and 15.4% had documented resuscitation plans.⁷ A New Zealand survey measuring different aspects of health, work, and retirement in older adults found that only 29.27% of participants had completed an enduring power of attorney document, 6.99% had completed a living will, and 3.98% had completed an advance care plan.⁸ In a nationwide survey, 81% of U.S. physician participants felt they discussed ACP with their patients too late.⁹ Having completed ACP is associated with a higher level of college education, higher socioeconomic status, older age, and a higher number of chronic illnesses.¹⁰ Compared to Whites, ethnic minorities were less likely to have completed ACP.^11,12 Common barriers cited include health literacy level, religion and spirituality, and health care system mistrust.¹³ In Indigenous populations, ACP and EOL practices such as palliative care and hospice are underutilized.¹⁴

The provision of care at EOL differs greatly between patients, each with particular needs for coping with illness.¹⁵ Therefore, it cannot be treated with a singular, universal approach. A growing literature exists about patient values and EOL preferences, particularly those influenced by cultural understandings.^16,17 Definitions of successful aging and what is perceived as a “good death” may differ between Indigenous populations and non-Indigenous populations. For example, Indigenous Australians have a strong connection to the land, so remaining “in country” is more important than life-sustaining treatment.^16,18,19 Understanding the preferences of Indigenous populations at EOL and the facilitators and barriers to pursuing ACP will contribute to improving EOL outcomes among Indigenous populations. Literature reviews have synthesized research on issues in providing palliative and end-of-life care to Indigenous communities, highlighting the importance of providing culturally tailored care at the EOL.^20–22 However, most reviews involve solely qualitative data, and little research has been done to synthesize both qualitative and quantitative research of multiple study designs among multiple Indigenous communities. Thus, this review aims to build upon this framework of knowledge and identify gaps in the current literature. The goal of this scoping review is to evaluate the existing literature about the prevalence and characteristics of ACP completion in Indigenous populations of North America and Oceania.

Methods

We performed two database searches to identify relevant articles. In search output 1, citations consisted of ACP completion in ethnic minorities overall (Supplementary Data S1). We searched PubMed and Google Scholar for articles published from September 2013 to October 2023 using search term keywords related to ACP (e.g., advance directive) and populations (e.g., ethnic minority). In search output 2, citation searches consisted of ACP completion specifically in Indigenous populations (Supplementary Data S1). We searched a wider range of databases, including PubMed, Google Scholar, PsycNet, Web of Science, and EBSCOhost, for articles published from September 2013 to October 2023 using search term keywords related to ACP and Indigenous populations (e.g., Native Hawaiian).

We exported search results into Zotero and removed duplicates. We screened titles and abstracts and, subsequently, with the remaining articles, conducted a full-text screening independently by two reviewers. We resolved disagreements by discussion and consensus. Included articles: (1) represented samples of Indigenous populations of North America and Oceania in entirety or in part; (2) were published in peer reviewed journals; (3) were published from September 2013 to October 2023; (4) addressed barriers to ACP, EOL care, palliative care, or POLST; (5) included adult participants (>18 years); and (6) were written in English. Excluded were articles that did not disaggregate data of multiple ethnic groups (Fig. 1).

FIG. 1.

PRISMA flow diagram for selection of ACP publications of Indigenous People of North America and Oceania for Review.

Using a data charting form, two reviewers independently extracted relevant information from each included article and discussed and continuously updated the table in an iterative process. We grouped studies by design type, characteristics (e.g., country of origin, aim, study methods), population (e.g., number of Indigenous participants in the total sample), and main findings. Because this review integrates evidence from multiple study designs, we employed a data-based convergent synthesis approach to combine qualitative and quantitative findings. Following the approach described by Noyes et al., all included studies were analyzed using the same methods, and the findings were integrated and presented together to address a single review question.²³ One reviewer identified recurring topics and created inductive code categories. Two reviewers then discussed the categories and independently grouped the findings by category using Microsoft Excel. From these categories, we identified five overarching themes: (1) culture and spirituality, (2) location/place of death is highly valued, (3) family support and relationships, (4) health system improvements, and (5) access to ACP resources. Following the identification of the five overarching themes, coded data within each theme were reexamined to identify patterns of convergence and divergence. Related codes were clustered to form subthemes, which reflected more granular distinctions within each broader domain. Subthemes were iteratively refined through discussion until consensus was achieved.

Evidence and gap maps (EGMs) represent a novel approach for synthesizing and visualizing the existing evidence related to a specific research question.²⁴ EGMs are particularly valuable for identifying gaps within the current literature, as well as highlighting areas that have been extensively studied. The EGM for this review was developed using the same methodological framework as the review itself, including the formulation of a research question, conducting a comprehensive search, screening against predefined inclusion and exclusion criteria, and the systematic coding of included studies through thematic analysis. Figure 3 was produced using Evidence for Policy & Practice Information (eppi.ioe.ac.uk) (EPPI) Mapper (Version 2.4.5).

Results

Literature search results

In total, 28 citations met the inclusion and exclusion criteria (Fig. 1). The study designs were interventional (n = 1, Table 1), observational (n = 7, Table 2), qualitative (n = 16, Table 3), and mixed methods (n = 4, Table 4). Studies were conducted in the United States (n = 15), New Zealand (n = 7), Australia (n = 4), and Canada (n = 2) (Fig. 2).

FIG. 2.

Geographic distribution of ACP publications by country.

Table 1.

Included Experimental Studies (n = 1)

Author(s), year, country	Aim	Participants (% of total sample)	Methods	Findings
Curtis et al. (2023)¹⁹ USA	Evaluate a communication-priming intervention to promote goals-of-care discussions between clinicians and hospitalized older patients with serious illness	45/2512 (1.8) AIAN 13/2512 (0.05) NHPI	Randomized controlled trial	The intervention significantly improved documentation of goals-of-care discussions, with a greater effect size in racially or ethnically minoritized patients. However, within American Indian and Pacific Islander groups, there was not a significant difference between the intervention and control (American Indian p = 0.519; Pacific Islander p = 0.593)

58/2512 (2.3%) Total Indigenous participants, 45/2512 (1.8%) AIAN, and 13/2512 (0.05%) NHPI (Native Hawaiian, Pacific Islander).

Table 2.

Included Observational Studies (n = 7)

Author(s), year, country	Aim	Participants (% of total sample)	Methods	Findings
Colclough and Brown (2023)²⁰ USA	Examine attitudes and beliefs about EOL issues from individuals to establish a baseline and seek an effective way to share EOL care options	92/92 (100) AIAN	Cross-sectional survey	Most participants chose quality of life over quantity of life. Many had not thought about or talked about their preference of EOL care. An individual-centered approach may be the most appropriate and effective strategy to promote hospice information and its use
Bernardes et al. (2021)²¹ Australia	Describe the service utilization and supportive care needs of Aboriginal and Torres Strait Islander people with cancer at end of life	58/58 (100) Indigenous Australian	Cohort	Worry and anxiety were important unmet needs. Addressing worries about treatment results, finances, and generalized anxiety are outstanding priorities in this population
Bajaj et al. (2023)²² USA	Examine trends and disparities in location of death among patients with esophageal cancer	1,154/237,063 (0.5) AIAN	Observational cohort	AIAN decedents were less likely to die at home or in hospice compared to the hospital. Increases in deaths in hospice over time occurred at a slower rate for AIAN and Asian decedents compared to White
Wood et al. (2021)²³ New Zealand	Describe the enablers and barriers perceived by remote area nurses in assisting in EOL care to Aboriginal Australians on their traditional lands	14/14 providers who work with Indigenous Australians	Cross-sectional survey	Nurses understood the importance of passing away on their traditional lands and felt they needed more education about culturally appropriate EOL care and cultural awareness. Communication and acknowledgment of individual requirements, needs, wants, expectations, and limitations, and brainstorming formally and informally about these needs, could lead to fewer barriers
Freitas and Zhang (2019)²⁴ USA	Investigate the relationship between spiritual beliefs and EOL decisions in Hawai’i	26/84 (31) NHPI	Cross-sectional survey	There appeared to be no association between spirituality and resuscitation decisions in any ethnic group. NHPI participants appeared to be more spiritual compared to Asian and White participants
Kwak et al. (2018)²⁵ USA	Investigate factors associated with advance care planning in American Indian and White populations	200/636 (31) AIAN	Cross-sectional survey	Most participants had a plan for EOL care. Having an EOL plan was associated with being older, having some college education, and having more chronic conditions. AI individuals were significantly less likely to have engaged in ACP than their White peers. AI individuals were less likely to have made a plan about EOL care, completed a Durable Power of Attorney for Health Care, or completed a living will
Park and Astell (2017)²⁶ NZ	Identify barriers to obtaining an enduring power of attorney in the geriatric population	14/100 (14) NHPI 10/100 (10) Māori	Cross-sectional survey	NZ Europeans were more likely than other ethnic groups to have an enduring power of attorney (EPA). More participants had EPA for property than for welfare, and participants were either unaware or felt they did not need one. Participants thought their families or providers would automatically be able to make decisions for them. Most participants felt a personal approach via health care providers or legal professionals was the best way for discussions

1554/238047 (0.65%) Total Indigenous participants: 1446/1554 (93%) AIAN, 58/1554 (3.7%) Indigenous Australians, 40/1554 (2.5%) NHPI (Native Hawaiian, Pacific Islander), and 10/1554 (0.64%) Māori.

Table 3.

Included Qualitative Studies (n = 16)

Author(s), year, country	Aim	Participants (% of total sample)	Methods	Findings
Potiki et al. (2023)²⁷ New Zealand	Report the cultural factors that might encourage New Zealand Māori who engage in mental health services to make greater use of psychiatric advance directives in their care	Thirty-seven/38 (97.4) Māori	Hui (meetings)	It would not be appropriate to place a Māori lens over the existing psychiatric advance directive instrument, whānau should be included in decision making and the creation of psychiatric advance directives, all mental health service providers have an obligation to understand the importance of correct acknowledgments, and having access to alternative therapies was important
Soltoff et al. (2022)²⁸ USA	Explore factors influencing palliative care access and delivery on reservation land in the Great Plains to inform the development of culturally tailored PC services for AIs	38/38 (100) Providers working with AIAN populations	Interviews	Four themes emerged (health care system operations, geography, workforce elements, and historical trauma and racism) that emphasize the importance of addressing the time and cost of travel for seriously ill patients, addressing home health and hospice availability on reservations, and improving trust in the medical system
Anderson et al. (2022)²⁹ USA	Explore the experiences and beliefs of Nephrology and palliative care providers of one tribal community with respect to engaging patients and family members in palliative care	8/8 (100) Providers working with AIAN populations	Interviews	Five themes included providers’ stereotypes, patients’ mistrust of providers, patients’ EOL preferences, available community resources, and patients’ family dynamics. Providers used stereotypical language when discussing AI patient and family behavior. They described how these personal characteristics were barriers for accessing EOL resources
Soltoff et al. (2022)³⁰ USA	Identify facilitators of implementation and barriers to sustainability associated with the development of palliative care programs designed for AI/ANs across the US	12/12 (100) Providers working with AIAN populations	Interviews	Facilitators of implementation include high tension for change and respecting cultural values. Barriers to sustainability include a lack of administrative leadership support. AI/AN-focused PC programs should be congruent with community needs
Lillie et al. (2020)³¹ USA	Develop a culturally-sensitive intervention on ACP for Native American and Alaska Native populations	23/35 (66) AIAN	Interviews	Major suggestions to adapt ACP interventions to AI/AN populations included removing jargon, including opportunities to discuss the importance of culture in health care decisions, asking patients who they want to be involved in ACP communications, and including the option of open-ended responses
Okamoto et al. (2020)³² USA	To explore EOL and PC practices and examine generational differences among Marshallese populations	19/19 (100) NHPI	Interviews	There were differences in EOL treatment preferences between younger and older Marshallese participants. Participants emphasized the desire for a pain-free death, but younger participants preferred more rigorous life-sustaining treatment. Participants from the RMI preferred dying at home in the RMI, but younger participants from Hawai’i preferred dying in the hospital so they could receive treatment
Moeke-Maxwell et al. (2020)³³ New Zealand	Evaluate the Whare Tapa Whā health model as a framework to guide EOL care of people of advanced age	19/58 (33) Māori	Interviews	Both Māori and non-Māori families addressed the need for EOL care across four domains: Whānau (social), Hinengaro (emotional/mental), Wairua (spiritual), and Tinana (physical)
Dennis and Washington (2018)³⁴ USA	Investigate conflicts between Western and AI/AN views of end-of-life care	20/20 (100) AIAN	Interviews	Common barriers identified were a limited need for formal planning, the importance of funeral and burial planning, and the desire for a peaceful death. An overall openness to discussions about ACP among participants was also reported
Isaacson (2018)³⁵ USA	Explore perspectives and potential barriers for Native American populations to receive EOL care	8/8 (100) AIAN	Interviews	Identified barriers such as lack of interpreters, access to traditional healing practices, and compassion from health care providers
Simpson et al. (2016)³⁶ New Zealand	Explores the effectiveness of palliative care brochures in aligning with Māori models of well-being and communication	15/17 (88) Māori	Focus groups	Brochures containing Māori imagery and symbols were highly ranked among participants. Implementing Māori cultural values and te reo Māori (Māori language) was also well received by participants. Suggestions included using more images of younger people and identifiably Māori families, respecting spiritual practices, and limiting medical jargon. Participants also preferred face-to-face communication over brochures and suggested using videos as an alternative
Goff et al. (2015)³⁷ USA	Explore recommendations for how dialysis teams should discuss ACP	4/22 (18) AIAN 1/22 (5) NHPI	Interviews	No participants reported previously discussing EOL goals with their nephrologist, but most were open to future discussions. Having negative experiences with dialysis makes ACP discussions challenging. Participants expressed that a perceived power differential between providers and older AI patients may present challenges to ACP discussions, as they may rely on the provider’s judgment for making ACP decisions on their behalf
Sinclair et al. (2014)³⁸ Australia	Understand Noongar perspectives on recent ACP legislation, to develop culturally appropriate information materials, and to raise community awareness regarding ACP	18/18 (100) Indigenous Australian	Interviews	Cultural factors in EOL discussions included the importance of dying in country, being surrounded by family, and death being a taboo discussion topic. It was also acknowledged that death and EOL planning are becoming more acceptable since funeral planning discussions are normalized. Some participants trusted their families to make decisions on their behalf, while others with complicated family situations preferred a more formalized approach
Dembinsky (2014)³⁹ Australia	Explore perceptions and use of palliative care services in Yamatji country	25/28 (89) Indigenous Australians	Interviews	There is a low uptake of hospital-based PC services by Yamatji, and services are strongly equated with death. Participants expressed preferences for dying at home in country and a large space to be surrounded by family and conduct traditional practices
Frey et al. (2014)⁴⁰ New Zealand	Explore the views of palliative care providers regarding the challenges to ACP and the methods to increase knowledge about ACP	3/40 (8) NHPI 3/40 (8) Māori	Interviews	Conflicts over ACP decisions may occur even if wishes are already documented due to collective cultural values. ACP discussions with PI families may include people beyond the nuclear family, and large families may present logistical issues for getting everyone involved in discussions. Providers described how PI patients want to do everything possible for their loved ones (i.e., full code). Fear of hastening the possibility of death was a challenge to discussing ACP
Bray and Goodyear-Smith (2013)⁴¹ New Zealand	Explore the perspectives of patients and caregivers on hospice-provided services	5/18 (28) NHPI 3/18 (17) Māori	Interviews	Friendliness and cultural awareness of staff can influence perspectives on hospice services. There was a lack of knowledge about hospice services among patients. Cultural factors like perceptions of hospice and differing ideas of treatment between Western and traditional medicine may be a barrier to pursuing services. Participants suggested making information more accessible through churches and community groups and providing translations
Frey et al. (2013)⁴² New Zealand	Identify barriers to the use of hospice services for Māori, Pacific and Asian patients	18/52 (35) NHPI	Interviews	Cultural differences between health providers and the communities they serve present challenges to EOL decisions. Patients and their families were not aware of the services available and reported limited access to information, leading to misinformation and misunderstandings about the nature of PC. Challenges to accessing information also included language and interpretation barriers. PI patients may be reluctant to utilize interpreters for discussing death. Financial worry was cited as a challenge to utilizing hospice services and health care in general

221/431 Total Indigenous participants (51%): 77/221 (35%) Māori, 55/221 AIAN (25%), 46/221 (21%) NHPI (Native Hawaiian, Pacific Islander), and 43/221 (19%) Indigenous Australian, RMI (Republic of the Marshall Islands).

Table 4.

Included Mixed Method Studies (n = 4)

Author(s), year, country	Aim	Participants (% of total sample)	Methods	Findings
Beddard-Huber et al. (2021)⁴³ Canada	Identify a strategy to improve a clinical tool to be more culturally safe for First Nations Peoples in BC and all First Nations and Indigenous Peoples and other cultures	35/96 (36.46) First Nations	Surveys and sharing circles	80% of nurses stated conversation guides “needed the Indigenous perspective.” Community members validated nurses’ feedback, except that they did not feel that holding a guide would deter from the empathic relationship. Community members validated the findings from the nurses, which included being direct when asking questions, including family in the conversation, establishing a trusting relationship with the patient, asking for permission, and scheduling time for storytelling
Colclough and Brown (2019)⁴⁴ USA	Investigate perspectives of death and EOL care among the Blackfeet population	102/102 (100) AIAN	Surveys and interviews	EOL discussions do not culturally violate the traditional beliefs of the Blackfeet Nation, and most (76%) of respondents agreed dying is a normal part of life. Participants reported fear of death and the negative emotions surrounding it as the cause of taboo
Kelley et al. (2018)⁴⁵ Canada	Explore Indigenous understandings of palliative care and develop interventions for First Nations communities	279/279 (100) First Nations	Surveys, focus groups, and interviews	Participants expressed preferences for dying at home and being cared for by their family and community at EOL. They reported lack of committed relationships with health care providers as a barrier. They also cited lack of access to PC programs, lack of medical supplies, and lack of education about PC as barriers
Pentaris (2018)⁴⁶ USA	Explore differences in perspectives on death among genders in Hawai’i	65/65 (100) NHPI	Interview and survey	Both men and women would prefer to be told if they are dying by a physician or a family member. Men were less likely to be open to discussions about death compared to women

481/542 (88%) Total Indigenous participants: 314/481 (65%) First Nations, 102/481 (21%) AIAN, and 65/481 (14%) NHPI (Native Hawaiian, Pacific Islander).

Based on the evidence gap map, the most frequently reported findings were family support and relationships (n = 20), followed by culturally unsafe services creating hesitancy and mistrust (n = 16), access to ACP resources (n = 16), and lack of funding and resources for EOL programs (n = 15) (Fig. 3). By country, the United States reported family support and relationships the most, New Zealand reported culturally unsafe services create hesitancy and mistrust the most, and Australia reported location/place of death being highly valued, family support and relationships, and lack of funding for programs the most. It was difficult to determine which findings were most frequent in Canada since only two studies were included.

FIG. 3.

Thematic gap map of ACP in Indigenous populations of North America and Oceania.

Prevalence of ACP completion

Indigenous populations had less frequent ACP completion than other ethnic groups, as reported in four studies. In a cross-sectional survey, American Indians were significantly less likely to have engaged in ACP compared to Whites.³¹ In another survey, in New Zealand’s Counties Manukau Health, Europeans were more likely to have an enduring power of attorney than other ethnic groups (including Māori and other Pacific Islanders).³² Among Blackfoot Indians in the United States, most (78%) did not have an advance directive in place and only about one-third thought of their EOL medical care preferences or had talked to their family about these preferences, according to a cross-sectional survey.²⁶ In a cohort study in Australia, only a small portion of Indigenous Australians with cancer received palliative care, despite most of them dying in a hospital.²⁷

Challenges to ACP completion

Culture and Spirituality

ACP as a taboo discussion topic

Twelve articles described ACP and discussions about death and dying as taboo, which was identified as a barrier in engaging with these discussions in the health care setting. These articles were predominantly qualitative, with interviews being the most common method. This theme was described by Indigenous participants from all four countries, as well as health care providers who worked with American Indian patients. This theme often came up in how participants described their communication with health care providers. For example, Frey et al. described a “shyness” driven by cultural norms in Māori and other Pacific Islander patients that prevents them from asking for help, as well as being reluctant to speak to providers from different cultural backgrounds.⁴⁷

Multiple reasons were cited for this taboo. While Blackfoot peoples in the United States had individual differences, Colclough and Brown reported that the majority pointed out a fear of death.⁴⁸ Negative life events like sickness and death can break the living spirit, so talking about death and EOL is difficult due to loss and its associated emotions.⁴⁸ Other reasons were not wanting to “give up” on their elders (e.g., providers mentioned Polynesian families prefer full code because they feel an obligation to do everything possible to care for their elders⁴⁶) and not “jinxing” death (e.g., Native Hawaiians suggested their will to live can slow down their death, and they can sense that their death is imminent).⁴⁹

However, EOL discussions were not always taboo topics. A study of Blackfoot Elders in the United States found most respondents strongly agreed that dying is a normal part of life, and discussions about care among families were not against tribal tradition. These discussions were necessary to provide care and combat feelings of powerlessness and should take place in a culturally comfortable environment.⁴⁸ Ojibwe Elders in the United States had a similar perspective, with almost all being open to discussions about death.⁴⁰ A lack of formal planning did not necessarily indicate a resistance to ACP.⁴⁰ EOL care discussions are also becoming more normalized in Indigenous communities. Sinclair et al. reported that discussions about death among Indigenous Australians were taboo in the past, yet funeral and burial planning discussions have led to more overall acceptance.⁴⁴

Spirituality may influence EOL decision making

Eleven articles discussed spirituality as playing a significant role in EOL decisions. Indigenous participants from all four countries emphasized the central role of spirituality in EOL care, influencing cultural practices, family experiences, and ACP decisions. As an example, Dembinsky et al. recognized the importance of specific ceremonies and practices surrounding death and acknowledged the cycle of life–death–life as a continuum in the belief system of Indigenous Australians.⁴⁵ In Māori communities, Moeke-Maxwell et al. discuss the importance of the Wairua (spiritual) domain, which includes the delivery of cultural and spiritual health care and the ability of patients to conduct spiritual customs at EOL.³⁹ Attending to these spiritual needs brought comfort to their families.³⁹ This is also true for constructing informational materials such as brochures, as described by Simpson et al.⁴² Participants highly valued spiritual imagery and recognized the importance of spirituality in EOL discussions.⁴²

The role of spirituality also has some impact on ACP decisions. Dennis and Washington found that leaving decisions up to Creator and trusting that things will “work out” results in people finding little need for making formal plans.⁴⁰ There was also a belief that the Creator would show signs that death is imminent, so people would know when they would die rather than viewing death as a sudden or unexpected event.⁴⁰ However, participants acknowledged the importance of planning for after-death to ensure implementation of their cultural and spiritual wishes.⁴⁰ In surveys measuring the spirituality of Native Hawaiians, they were found to have higher levels of spiritual and religious beliefs than Caucasian participants; however, Freitas and Zhang noted there was no association between spirituality and resuscitation decisions.³⁰

Location (Place) of Death Is Highly Valued

The location (place) of dying was cited by 14 articles as being an important factor in EOL planning (Fig. 3). Across these studies, preferences around place of death were closely tied to cultural values, family presence, and connection to home and land. According to Dembinsky et al., a major concern among Yamatji is not being able to die “in country.”⁴⁵ This is also discussed by Sinclair et al., where discussions revealed a desire to be buried in their home country, surrounded by family.⁴⁴

Multiple articles also reported wishes to die at home, surrounded by family. Kelley et al. reported that most (87%) respondents preferred to receive palliative care (PC) at home in their First Nations communities.⁵⁰ Pentaris discussed how all Native Hawaiian participants desired a natural death at home.⁴⁹ Māori and Polynesian patients were recognized by providers for having a strong need for having a large space to be surrounded by family.^39,51 Ojibwe elders in a United States study by Dennis and Washington desired a peaceful death at home and expressed that some medical interventions were not compatible with a peaceful death.⁴⁰ Blackfoot Indians in the United States also desired a peaceful and painless death at home, but they wanted some type of hospital treatment when dying.²⁶ Interestingly, Okamoto et al. found that among Marshallese participants, participants (both from the U.S. and the Republic of the Marshall Islands) were more concerned with the burial of the body being at home than with the location where the death occurred.³⁸

Family Support and Relationships

The role of family and the community is highly valued in EOL care, and decision making was a recurring theme in 20 articles, making it the most frequently mentioned theme overall (Fig. 3). These articles consistently highlighted a shared emphasis on collective care, family presence, and relational decision making at the EOL. Although cultural and spiritual beliefs varied among Indigenous peoples, there was still a shared importance of caring for dying community members.⁵⁰ In one study, Pentaris reported that Native Hawaiians appeared to experience death and grieving collectively.⁴⁹ Moeke-Maxwell et al. found that family involvement in health care planning initiatives, decisions about physical care, and having the space to gather near their loved ones satisfied the Tinana domain in the Te Whare Tapa Whā model of well-being, making it an essential component to providing care.³⁹ All Māori participants in Potiki et al. emphasized that involving families in the decision-making process is essential, describing the concepts of whakawhanaungatanga (establishing and building relationships) and manaakitanga (respect, generosity, and care for others).³³ The importance of family involvement was also observed by health care providers who work with Indigenous patients. For example, in Canada, nurses described holding a conversation without family present as culturally unsafe in First Nations communities.⁵²

High family involvement in EOL care among Indigenous peoples may result in a decreased need for ACP. Sinclair et al. reported that Indigenous Australians have a sense of trust in their family to make medical decisions on their behalf, so there was no need for formal documentation.⁴⁴ However, Sinclair et al. also found that Indigenous Australians with complicated family relationships prefer more formal planning in their care.⁴⁴ Similarly, Goff et al. described how differing types of patient-family/friend interactions could potentially affect ACP discussions.⁴³

With the high involvement of families in EOL care, conflicts among family members over goals of care can create hesitancy to engage with planning. Frey et al. reported that patients withhold wishes from their families to preserve harmony.⁴⁶ Instead, they defer to the judgment of health care providers.⁴⁶ Isaacson reported that the eldest child is typically designated as the primary spokesperson for the elder, but may not always represent their true wishes.⁴¹ Participants in this study also recognized that changing the designated spokesperson through formal planning can ensure wishes are followed through.⁴¹

Health System Improvements

Perceptions held by health service providers

Perceptions of Indigenous people by health care providers create a barrier to EOL care engagement, as reported by 10 articles (Fig. 3). These perceptions often reflect stereotypes and assumptions that negatively shape provider–patient interactions and limit engagement in EOL care. Anderson et al. reported the use of stereotypical language to describe American Indian attitudes toward PC, such as fatalistic and nihilistic.³⁵ Some attributed the lack of engagement in PC to the patient’s shortcomings, like not wanting help, being noncompliant, difficult to reach, or being overall uninterested.³⁵ They also describe families as being disjointed and high emotion, making their care challenging.³⁵ Some had the misperception that American Indian patients have access to many health resources since their tribe pays for everything.³⁵ These harmful perceptions can be a barrier to information provision and lead to providers playing a “gatekeeper role” in planning engagement.⁴⁷

Relationships between patients, their families, and staff were repeatedly identified in 10 articles. Beddard-Huber et al., Kelley et al., and Sinclair et al. discussed the importance of establishing a relationship between the provider and patient before beginning the conversation due to the difficulty of EOL discussions.^44,50,52 According to Moeke-Maxwell et al., relationships between health care professionals and patients fall into the domains of whānau (social well-being) and hinengaro (mental and emotional well-being) in the Te Whare Tapa Whā model of well-being.³⁹ Māori participants valued connections with staff, providers taking an interest and having empathy, and shared ties with the local community.³⁹ These values were also shared by Māori participants in another study, who explained that whakawhanaungatanga (establishing and building relationships) helps to address mistrust and willingness to ask for help.⁴⁷ Without these relationships, patients are less likely to discuss their goals of care with providers. In interviews conducted at a dialysis center by Goff et al., patients and their caregivers desired more connection with their nephrologist and staff, and a lack of rapport with staff is likely to impact their ACP decisions.⁴³

Culturally unsafe services create hesitancy and mistrust

Incompatibility between Western health care systems and Indigenous EOL practices may create barriers to care, as described in 16 articles. These challenges often arise when Western health care practices fail to reflect Indigenous cultural values, histories, and lived experiences. Dembinsky et al. describe how Australian hospitals did not accommodate Yamatji culture at the EOL.⁴⁵ For example, physical limitations of hospital space prevented families from gathering, behaviors such as crying, wailing, or not eating were frowned upon by providers, and there was a lack of privacy for passing on sacred information, which is an important practice at EOL.⁴⁵

Racism, medical mistrust, and generational trauma in Indigenous patients play a role in pursuing health care. Mistrust of health care due to historical trauma in American Indian patients was found to negatively impact the ability to build relationships with providers and hold effective discussions.³⁴ This mistrust was further reinforced by ongoing poor continuity of care and racism.³⁴ Some health care providers also acknowledged the negative impacts of history and the lack of cultural sensitivity education on providing EOL care to American Indian patients.³⁵ Perceived power differentials between doctors and patients were also cited as a potential threat to trust in American Indian patients.⁴³

Provision of information may not be culturally appropriate. For example, when assessing the ability of PC brochures to meet Māori cultural needs, participants pointed out a lack of local landscapes, a lack of Māori people, a lack of younger generations, a lack of understanding of cultural values by brochure authors, and images that conflicted with the values being expressed in the text.⁴² It was also recognized that it is not sufficient to simply place an Indigenous lens over a non-Indigenous practice. In examining a psychiatric advance directive instrument, Potiki et al. reported that participants acknowledged the instrument might be useful, but simply putting a Māori lens over it without a deeper understanding would lack the cultural considerations that would make it effective.³³ As one participant explained, “It’s a good concept, but why do we still have to justify ourselves being Māori to a Pākehā system?”³³

Lack of funding and resources for EOL programs

Fifteen of the included articles frequently mentioned a lack of funding and resources in PC, hospice, and other EOL areas of care. These studies consistently pointed to systemic and structural constraints that limit access to timely and adequate EOL care for Indigenous populations. Challenges such as resource gaps, staffing shortages, a lack of services, and a lack of support for families make it difficult to provide quality care at EOL.^34,35,50 These challenges are pronounced in rural areas. Soltoff et al. noted issues with the availability of hospice and home health services for patients living on reservations.²⁶ Three other studies also described similar challenges, with travel issues like transportation, money, and gas being significant challenges.^29,34,41,45 Three studies specifically described challenges with EOL care with the Indian Health Service.^34,35,41 Kelley et al. paint a similar picture for health care systems in First Nations communities,⁵⁰ and Potiki et al. describe this issue in Māori communities as well, with systemic shortcomings and a lack of Māori leadership being the cause of fragmented services.³³

Financial concerns of patients also pose a barrier to pursuing EOL care and planning. Health care providers noted that limited financial resources create a reluctance to engage in PC.³⁵ In a survey by Colclough and Brown, more than half (57%) of participants expressed an interest in receiving hospice care, but many (42%) felt they could not afford it.²⁶ While not directly related to ACP, financial burdens of the funeral and burial process were also a cause of tension in EOL planning, further contributing to a reluctance to have discussions.⁴⁴

Access to ACP Resources

Limited understanding of the services available at EOL among patients was reported as a barrier in 16 articles (Fig. 3). Participants often had a limited understanding of PC versus hospice, a limited understanding of what services were available to them, and an unawareness of how these practices can be adjusted to meet cultural and spiritual needs.^35,45,47,51 Multiple studies reported a general openness to discussions about ACP, but participants did not pursue it because they were unaware or had not previously given it much thought.^{31,40,43,44,50}

Health literacy was reported to be a barrier to accessing information about EOL planning and care in five articles. Together, these articles suggest that limited awareness, health literacy challenges, and language barriers restrict engagement with ACP. In the PC brochures presented in a study by Simpson et al., Māori participants did not appreciate the use of jargon and wordy sentences.³⁴ This was shared by participants in Beddard-Huber et al., where both nurses and community members identified wording as an issue in interventions, and more direct, plain language was needed.⁴¹

Language barriers were also a significant challenge in providing care in seven articles. The translation and interpretation of discussions were barriers to holding conversations about ACP for both providers and patients.^32,35,46,47 There was also a reported reluctance to use interpreters for discussing death, and the availability of interpreters was of concern.^41,47

Interventions

Several studies explored strategies aimed at improving engagement in end-of-life planning, focusing on both provider-facing tools and community-based approaches. These interventions were designed to support more effective communication, documentation, and access to information.

Conversation guides for health care providers were explored as a potential method for improving documentation in two articles. In a randomized controlled trial evaluating a communication-priming intervention in the United States, the intervention led to a significant increase in the documentation of goals of care discussions, with greater effects seen among patients of ethnic minority populations.²⁵ However, no significant differences were found between intervention and control groups within American Indian or Pacific Islander participant groups (American Indian p = 0.519, Pacific Islander p = 0.593).²⁵ In a study evaluating the effectiveness of the Serious Illness Conversation Guide in First Nations and Indigenous Peoples in British Columbia, some nurses felt that holding a conversation guide might come off as impersonal and disrespectful to Indigenous patients, but community members did not feel it would deter them from maintaining an empathetic relationship.⁵² Their suggestions for improving this tool included being direct with asking questions, asking permission before beginning discussions, and adjusting terminology following the patient’s health literacy.⁵²

To improve the accessibility of information about planning, outreach events were recommended to engage with the community in seven articles. Participants in the study by Sinclair et al. appreciated being able to receive information about ACP from a person they are familiar with in a comfortable and relaxed environment, like a community event.⁴⁴ Although face-to-face communication is preferred by most, it may not always be possible, so brochures and videos may suffice as an alternative.⁴² Technology was also suggested as a way to reach younger generations.⁴⁴

Discussion

This scoping review synthesizes current knowledge on ACP in populations Indigenous to North America and Oceania. Studies incorporated perspectives of patients, their families, and providers from the United States, Canada, New Zealand, and Australia. This topic was explored more frequently in the United States, which had more articles compared to New Zealand, Australia, and Canada. We found a paucity of EOL research involving Indigenous groups in Canada, with only two articles meeting the inclusion criteria. The included articles were diverse in study design but were predominantly qualitative. There is a need for more intervention designs or experimental research about ACP and for evaluating potential intervention programs within Indigenous communities.

Although Indigenous communities are known to be diverse, the literature review identified common needs and preferences. Our findings suggest Indigenous peoples have specific EOL preferences and are generally open to discussions about ACP, but there needs to be systemic changes for ACP interventions to be developed and implemented widely. Improving cultural competence in EOL care is one of the biggest areas of improvement discussed in the included articles. One proposed method is increased training of providers on how to provide culturally competent care. Education on topics such as the impact of the cultural history of an Indigenous population, cultural awareness in EOL care, and more training in EOL care overall were mentioned as areas of improvement.^29,34,41,50 Translating resources and documents and connecting them with cultural values was suggested as a way of addressing concerns about cultural safety in potential interventions. According to Potiki et al., providers must understand and respect the language, especially with people’s names.³³ Isaacson also emphasized the need for more interpreters and for workers within the Indian Health Service to learn the language to provide effective care to elders.⁴¹ Simpson et al. found that community members endorsed the use of te reo, Māori language, and Māori images in symbols in PC brochures to connect with cultural identity needs.⁴² Formal planning has the potential to be a helpful tool to ensure wishes are carried out, yet engagement continues to be low. There was also a call for providing culturally competent care by including family in the process, interpreting documents, and integrating the community in developing interventions for improving engagement. It is also not enough to put an Indigenous graphic image over a non-Indigenous tool; it needs to be redefined from within the community so that it can address and meet their specific needs.

Despite growing attention to EOL care and ACP among Indigenous populations, several gaps remain. Most studies are qualitative with small samples, and there is a lack of larger studies with appropriate representation to ensure that thematic saturation has been appropriately established. In addition, existing studies are cross-sectional glimpses at the underlying issues that intersect with EOL care. Longitudinal research studies have the potential to identify and differentiate between phenomena such as temporal trends, demographic cohort effects, or the influence of community-based and/or health system initiatives to provide more generalizable insights.⁵³ Many Indigenous communities, particularly those in rural or underrepresented regions, also have limited representation in the literature.^53,54 Finally, there is insufficient evaluation of culturally adapted health systems or community-based interventions, including conversation guides, educational materials, community-based outreach, or community health worker-facilitated programs to improve engagement in ACP.^37,53–56

Limitations

This review offers an Indigenous perspective on EOL planning; however, there are several limitations to consider. These populations are underrepresented in research involving ACP, so the scope of this review is limited to what has been published. There are also a few studies that aggregate data (e.g., grouped into API or “other”), which makes it difficult to generalize the findings of each article to these populations.

This review also incorporates multiple Indigenous populations from multiple countries. Although they share similar histories of colonization and marginalization, each group has its own unique experiences. Not all beliefs about death are shared between communities, and even individuals within communities have conflicting beliefs. Each country has its laws and policies regarding ACP and EOL planning, as well as its systems for addressing the health of its Indigenous populations. Each process has its respective differences, but incorporating multiple processes will help to paint a larger picture of Indigenous experiences and existing barriers to the EOL process.

Conclusion

Based on the citations identified in this scoping review, there are several influences in ACP discussions and planning for the EOL in Indigenous populations. These include the role of culture and spirituality, family support and relationships, health care facilitators, and access to ACP resources. ACP interventions that recognize factors identified as important by patients, family members, and health care providers may have the potential to increase ACP documentation and ultimately improve EOL care and experiences among Indigenous populations.

Footnotes

Author Disclosure Statement

No competing financial interests exist.

Funding Information

The following funded grants was received for this article: National Institutes of Health (NIH), The National Institute of Nursing Research (NINR); 5R01NR018400.

Supplemental Material

References

1. Yadav

, Gabler

, Cooney

, et al. Approximately one in three U.S. adults completes any type of advance directive for end-of-life care. Health Aff (Millwood) 2017;36(7):1244–1251; doi: 10.1377/hlthaff.2017.0175

2. Sudore

, Lum

, You

, et al. Defining advance care planning for adults: A consensus definition from a multidisciplinary Delphi panel. J Pain Symptom Manage 2017;53(5):821–832.e1; doi: 10.1016/j.jpainsymman.2016.12.331

3. Teno

, Gruneir

, Schwartz

, et al. Association between advance directives and quality of end-of-life care: A national study. J Am Geriatr Soc 2007;55(2):189–194; doi: 10.1111/j.1532-5415.2007.01045.x

4. Ouslander

, Naharci

, Engstrom

, et al. Root cause analyses of transfers of skilled nursing facility patients to acute hospitals: Lessons learned for reducing unnecessary hospitalizations. J Am Med Dir Assoc 2016;17(3):256–262; doi: 10.1016/j.jamda.2015.11.018

5. Neller

, Feeney

, Willmott

, et al. Australian Indigenous people and treatment decision-making at end-of-life. Alternative Law Journal 2024;49(2):104–113; doi: 10.1177/1037969X241255172

6. Detering

, Buck

, Ruseckaite

, et al. Prevalence and correlates of advance care directives among older Australians accessing health and residential aged care services: Multicentre audit study. BMJ Open 2019;9(1):e025255; doi: 10.1136/bmjopen-2018-025255

7. Jeong

, Barrett

, Ohr

, et al. Prevalence of advance care planning practices among people with chronic diseases in hospital and community settings: A retrospective medical record audit. BMC Health Serv Res 2021;21(1):303; doi: 10.1186/s12913-021-06265-y

8. Brown

. The Uptake of Advance Care Planning by Older Adults in New Zealand . Massey University; 2018. Available from: https://mro.massey.ac.nz/server/api/core/bitstreams/707733dc-e441-4418-9485-8008acab9c32/content

9. Ufere

, Donlan

, Waldman

, et al. Barriers to use of palliative care and advance care planning discussions for patients with end-stage liver disease. Clin Gastroenterol Hepatol 2019;17(12):2592–2599; doi: 10.1016/j.cgh.2019.03.022

10.

10. Barwise

, Juhn

, Wi

, et al. An individual housing-based socioeconomic status measure predicts advance care planning and nursing home utilization. Am J Hosp Palliat Care 2019;36(5):362–369; doi: 10.1177/1049909118812431

11.

11. Clark

, Person

, Gosline

, et al. Racial and ethnic differences in advance care planning: Results of a statewide population-based survey. J Palliat Med 2018;21(8):1078–1085; doi: 10.1089/jpm.2017.0374

12.

12. Harrison

, Adrion

, Ritchie

, et al. Low completion and disparities in advance care planning activities among older Medicare beneficiaries. JAMA Intern Med 2016;176(12):1872–1875; doi: 10.1001/jamainternmed.2016.6751

13.

13. de Vries

, Banister

, Dening

, Ochieng

. Advance care planning for older people: The influence of ethnicity, religiosity, spirituality and health literacy. Nurs Ethics 2019;26(7–8):1946–1954; doi: 10.1177/0969733019833130

14.

14.National Hospice and Palliative Care Organization. Hospice Facts & Figures.2023. Available from: https://www.nhpco.org/hospice-care-overview/hospice-facts-figures/ [Last accessed: January 6, 2024].

15.

15. Mularski

, Dy

, Shugarman

, et al. A systematic review of measures of end-of-life care and its outcomes. Health Serv Res 2007;42(5):1848–1870; doi: 10.1111/j.1475-6773.2007.00721.x

16.

16. Waran

, Wallace

, Dodson-Jauncey

. Failing to plan is planning to fail: Advance care directives and the Aboriginal people of the Top End. Med J Aust 2017;206(9):377; doi: 10.5694/mja16.00843

17.

17. Hong

, Yi

, Johnson

, Adamek

. Facilitators and barriers for advance care planning among ethnic and racial minorities in the U.S.: A systematic review of the current literature. J Immigr Minor Health 2018;20(5):1277–1287; doi: 10.1007/s10903-017-0670-9

18.

18. Waran

, O’Connor

, Zubair

, May

. “Finishing up” on country: Challenges and compromises. Intern Med J 2016;46(9):1108–1111; doi: 10.1111/imj.13186

19.

19. McGrath

, Holewa

. Seven principles for indigenous palliative care service delivery: Research findings from Australia. Austral-Asian Journal of Cancer 2006;5(3):179–187.

20.

20. Isaacson

, Lynch

. Culturally relevant palliative and end-of-life care for U.S. indigenous populations: An integrative review. J Transcult Nurs 2018;29(2):180–191; doi: 10.1177/1043659617720980

21.

21. Duggleby

, Kuchera

, MacLeod

, et al. Indigenous people’s experiences at the end of life. Palliat Support Care 2015;13(6):1721–1733; doi: 10.1017/S147895151500070X

22.

22. Kelly

, Minty

. End-of-life issues for aboriginal patients: A literature review. Can Fam Physician 2007;53(9):1459–1465.

23.

23. Noyes

, Booth

, Moore

, et al. Synthesising quantitative and qualitative evidence to inform guidelines on complex interventions: Clarifying the purposes, designs and outlining some methods. BMJ Glob Health 2019;4(Suppl 1):e000893; doi: 10.1136/bmjgh-2018-000893

24.

24. White

, Albers

, Gaarder

, et al. Guidance for producing a Campbell evidence and gap map. Campbell Syst Rev 2020;16(4):e1125; doi: 10.1002/cl2.1125

25.

25. Curtis

, Lee

, Brumback

, et al. Intervention to promote communication about goals of care for hospitalized patients with serious illness: A randomized clinical trial. JAMA 2023;329(23):2028–2037; doi: 10.1001/jama.2023.8812

26.

26. Colclough

, Brown

. Attitudes and beliefs of end-of-life care among blackfeet Indians. Am J Hosp Palliat Care 2023;40(7):727–736; doi: 10.1177/10499091221119141

27.

27. Bernardes

, Beesley

, Shahid

, et al. End-of-life care for Aboriginal and Torres Strait Islander people with cancer: An exploratory study of service utilisation and unmet supportive care needs. Support Care Cancer 2021;29(4):2073–2082; doi: 10.1007/s00520-020-05714-4

28.

28. Bajaj

, Jain

, Potter

, et al. Racial and ethnic disparities in end-of-life care for patients with oesophageal cancer: Death trends over time. Lancet Reg Health Am 2023;17:100401; doi: 10.1016/j.lana.2022.100401

29.

29. Wood

, Forsyth

, Dawson

. Remote area nurses’ perceptions of the enablers and barriers for delivering end-of-life care in remote Australia to Aboriginal people who choose to pass away on their traditional lands. Rural Remote Health 2021;21(3):6485; doi: 10.22605/RRH6485

30.

30. Freitas

, Zhang

. Exploration of patients’ spiritual/religious beliefs and resuscitation decisions. Hawaii J Health Soc Welf 2019;78(7):216–222.

31.

31. Kwak

, Cho

, Lee

, et al. Differences in advance care planning between American Indian and white older adults. Res Gerontol Nurs 2019;12(1):34–43; doi: 10.3928/19404921-20181212-02

32.

32. Park

, Astell

. Prevalence of enduring power of attorney and barriers towards it in community geriatric population in Counties Manukau Health. N Z Med J 2017;130(1453):35–45.

33.

33. Potiki

, Tawaroa

, Casey

, et al. Cultural influences on the creation and use of psychiatric advance directives. Psychiatr Serv 2023;74(12):1299–1302.

34.

34. Soltoff

, Purvis

, Ravicz

, et al. Factors influencing palliative care access and delivery for great plains American Indians. J Pain Symptom Manage 2022;64(3):276–286; doi: 10.1016/j.jpainsymman.2022.05.011

35.

35. Anderson

, Twiggs

, Goins

, et al. Nephrology and palliative care providers’ beliefs in engaging American Indian patients in palliative care conversations. J Palliat Med 2022;25(12):1810–1817; doi: 10.1089/jpm.2021.0612

36.

36. Soltoff

, Isaacson

, Stoltenberg

, et al. Utilizing the consolidated framework for implementation research to explore palliative care program implementation for American Indian and Alaska Natives throughout the United States. J Palliat Med 2022;25(4):643–649; doi: 10.1089/jpm.2021.0451

37.

37. Lillie

, Dirks

, Curtis

, et al. Culturally adapting an advance care planning communication intervention with American Indian and Alaska native people in primary care. J Transcult Nurs 2020;31(2):178–187.

38.

38. Okamoto

, Riklon

, Masaki

, et al. Evolving palliative care practices among Marshall Islanders in Hawai’i: Generational comparisons. Hawaii J Health Soc Welf 2020;79(6 (Suppl 2)):82–88.

39.

39. Moeke-Maxwell

, Collier

, Wiles

, et al. Bereaved families’ perspectives of end-of-life care. Towards a bicultural Whare Tapa Whā Older person’s palliative care model. J Cross Cult Gerontol 2020;35(2):177–193; doi: 10.1007/s10823-020-09397-6

40.

40. Dennis

, Washington

. “Just Let Me Go”: End-of-Life planning among Ojibwe Elders. Gerontologist 2018;58(2):300–307.

41.

41. Isaacson

. Addressing palliative and end-of-life care needs with Native American elders. Int J Palliat Nurs 2018;24(4):160–168.

42.

42. Simpson

, Berryman

, Oetzel

, et al. A cultural analysis of New Zealand palliative care brochures. Health Promot Int 2016;31(4):839–848; doi: 10.1093/heapro/dav067

43.

43. Goff

, Eneanya

, Feinberg

, et al. Advance care planning: A qualitative study of dialysis patients and families. Clin J Am Soc Nephrol 2015;10(3):390–400; doi: 10.2215/CJN.07490714

44.

44. Sinclair

, Williams

, Knight

, Auret

. A public health approach to promoting advance care planning to Aboriginal people in regional communities. Aust J Rural Health 2014;22(1):23–28; doi: 10.1111/ajr.12079

45.

45. Dembinsky

. Exploring Yamatji perceptions and use of palliative care: An ethnographic study. Int J Palliat Nurs 2014;20(8):387–393; doi: 10.12968/ijpn.2014.20.8.387

46.

46. Frey

, Raphael

, Bellamy

, Gott

. Advance care planning for Māori, Pacific and Asian people: The views of New Zealand healthcare professionals. Health Soc Care Community 2014;22(3):290–299; doi: 10.1111/hsc.12081

47.

47. Frey

, Gott

, Raphael

, et al. “Where do I go from here”? A cultural perspective on challenges to the use of hospice services. Health Soc Care Community 2013;21(5):519–529; doi: 10.1111/hsc.12038

48.

48. Colclough

, Brown

. Moving toward openness: Blackfeet Indians’ perception changes regarding talking about end of life. Am J Hosp Palliat Care 2019;36(4):282–289; doi: 10.1177/1049909118818255

49.

49. Pentaris

. The Cultural Context of Dying: Hawai’ian Death Conceptions and The Gender Divide. Asia Pacific Journal of Multidisciplinary Research 2018;6(4).

50.

50. Kelley

, Prince

, Nadin

, et al. Developing palliative care programs in Indigenous communities using participatory action research: A Canadian application of the public health approach to palliative care. Ann Palliat Med 2018;7(Suppl 2):S52–S72; doi: 10.21037/apm.2018.03.06

51.

51. Bray

, Goodyear-Smith

. Patient and family perceptions of hospice services:’I knew they weren’t like hospitals.’ Journal of Primary Health Care 2013;5(3):206–213.

52.

52. Beddard-Huber

, Gaspard

, Yue

. Adaptations to the serious illness conversation guide to be more culturally safe. Int J Indig Health 2021;16(1):38–53.

53.

53. McMahan

, Tellez

, Sudore

. Deconstructing the complexities of advance care planning outcomes: What do we know and where do we go? a scoping review. J Am Geriatr Soc 2021;69(1):234–244; doi: 10.1111/jgs.16801

54.

54. Hughes

, Cottle

, Gremillion

. A community approach to palliative care: Embracing indigenous concepts and practices in a hospice setting. Journal of Systemic Therapies 2013;32(1):56–69; doi: 10.1521/jsyt.2013.32.1.56

55.

55. Barrera

, Castro

, Strycker

, Toobert

. Cultural adaptations of behavioral health interventions: A progress report. J Consult Clin Psychol. 2013;81(2):196–205; doi: 10.1037/a0027085

56.

56. Patel

, Kapphahn

, Dewland

, et al. Effect of a community health worker intervention on acute care use, advance care planning, and patient-reported outcomes among adults with advanced stages of cancer: A randomized clinical trial. JAMA Oncol. 2022;8(8):1139–1148; doi: 10.1001/jamaoncol.2022.1997

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