AN EXPLORATION OF CANADIAN INDIGENOUS WORLDVIEWS AND
PALLIATIVE CARE: AN INTEGRATIVE REVIEW

by

D. Alexander Lumley
B.Sc.N., Vancouver Island University

PROJECT SUBMITTED IN PARTIAL FULFILLMENT OF
THE REQUIREMENTS FOR THE DEGREE OF
MASTER OF SCIENCE
IN
NURSING
(FAMILY NURSE PRACTITIONER)

UNIVERSITY OF NORTHERN BRITISH COLUMBIA

NOVEMBER 2021

© D. Alexander Lumley, 2021

ii

Abstract

Background: Some Indigenous people suffer from a disproportionate prevalence of life limiting
conditions, with increased mortality and decreased life-expectancy compared to non-Indigenous

populations. Reduced uptake of palliative care services by Indigenous populations is concerning
and further cultural understanding is needed to improve delivery of palliative care services. This
review explores Indigenous user experiences with palliative care in Canada through the research

question: How does a worldview affect the delivery of palliative care services to Indigenous
people living with life limiting conditions?
Method: Seven primary source articles are analyzed concerned Inuit and First Nation and Metis

perspectives on palliative care. Summative themes identified including traditional and
contemporary experiences, EOL beliefs, EOL preferences, EOL communication, EOL capacity,

EOL resource and policy limitations, and recommendations for palliative care improvements.
Dialogue examples accompanying the themes are analysed with Hiebert’s Worldview Model
concerning nine worldview features including time, self-concept, space, feeling, preference,
sensation, food, beliefs, emotion and ethics, values, and judgement.

Results: some Canadian Indigenous people’s self-concept and spiritual beliefs may conflict with
western individualistic delivery of care, and serious illness conversations.

Conclusion: Culturally sensitive and competent approaches to palliative care marginally
improve care delivery for Indigenous populations, but they do not improve health equity. A
cultural safe approach to palliative care can help address health equity for Indigenous people and
lead to increased culturally accessible, accommodating, and acceptable EOL care.

Keywords: Indigenous, Aboriginal, First Nation, Metis, Inuit, worldview, palliative care, EOL.

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Table of Contents

Abstract

ii

Table of Contents

iii

List of Tables

vi

List of Figures

vii

Acknowledgements

viii

Introduction
Situating Myself
Integrative Review

1
6
8

Chapter One

Background
Indigenous People in Canada
Canadian Indigenous Health Equity
Social Determinants of Health and Palliative Care
Palliative Care
Nurse Practitioner Palliative Care
Overview of Indigenous Palliative Care
Integration of Palliative Care into Primary Healthcare

10
12
14
15
25
27
29
34

Chapter Two

Method
Literature Search Stage
Data Analysis Stage

38
39
47

Chapter Three

Findings
Traditional and Contemporary EOL Experiences
EOL Beliefs
EOL Preference
EOL Communicaiton
EOL Capacity
EOL Resource and Policy Limitations
Recommendations for Palliative Care Improvement

49
51
54

Discussion
EOL Cultural Beliefs
EOL Cultural Preference
EOL Cultural Communicaiton
EOL Capacity
EOL Resource and Policy Limitations
Recommendations for Palliative Care Improvement
Implications for Practice, Policy and Research

89
90
93
96
99
100
102
102

Chapter Four

69

75
81
83
85

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Chapter Five

Limitations

104

Conclusions

106

Footnotes

110

References

111

Appendices

123
123
129
141

Appendix 1: Data Matrix Table
Appendix 2: Theme Matrix Table
Appendix 3: Search Filters

V

List of Tables

Table 1

Database Search Results

Table 2

PRISMA Flow Diagram of Search Strategy and Article Selection.... 42

121

vi

List of Figures

Figure 1

Worldview Cognitive, Affective, and Evaluative Features

43

Figure?

Theme Findings

50

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Acknowledgements

I acknowledge I am on the territories of the Laichwiltach peoples, inclusive of the Wei
Wai Kum, We Wai Kai, and Kwiakah First Nations as I write this review.

I would like to thank Dr. Davina Banner-Lukaris and Dr. Tina Fraser for your support,
and guidance. I thank you for sharing your knowledge and challenging me to deepen my critical
thinking.

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Introduction

Canadian colonial policies of cultural genocide and assimilation, and their associated

disruption of connection to land, language, and culture, have resulted in trauma and ongoing
socioeconomic disparity and health inequity for many Indigenous1 people (Dussault & Erasmus,
1996; King, Smith & Gracey, 2009; National Inquiry into Missing and Murdered Indigenous

Women and Girls [MMIWG], 2019; Truth and Reconciliation Commission [TRC], 2015a,
Turpel-Lafond, 2020). Consequently, in Canada, some Indigenous people suffer from a
disproportionate prevalence of diabetes, hypertension, substance abuse, mental health concerns
and other life limiting conditions, with concomitant increased morbidity and mortality compared
to non-Indigenous populations (Gracey & King, 2009; Kim, 2019; King et al., 2009; Reading &

Wien, 2013).

In Canada, Aboriginal2 people compared to non-Aboriginal people at 65 years of age
have a life expectancy difference of 4.6 years for First Nations men, 6.2 years for First Nation
women, 2.7 years for Metis men, 3.8 years for Metis women, 4.9 years for Inuit men, and 5.9

years for Inuit women (Tjepkema, Bushnik, & Bougie, 2019). Furthermore, the Canadian
Indigenous population is aging and experiencing an associated increased prevalence of noncommunicable disease due to age related increased susceptibility, and the ongoing biomedical
transformation of previously fatal illnesses into chronic diseases; thereby, driving increased
demand for primary and palliative care services (Rocker, Downar, & Morrison, 2016).

In Canada, persons self-identifying as Aboriginal are predicted to increase from 1 .4
million people in 2016 to more than 2.5 million people by 2036 (Statistics Canada, 2017), with a
doubling in those aged 65 and older (First Nations Information Governance Centre [FNIGC],
2020). Thus, aging, and increased disease prevalence are increasing suffering for some

2

Indigenous people and highlights the need for culturally accessible primary health promotion,

prevention, treatment, and palliation for Indigenous people in Canada.
Indigenous palliative care deficits from the extant literature are a contemporary framing

of Indigenous health and wellness in a western scientific ontology of an objective reality, with an
epistemological foundation on the empirical paradigm and biomedical model. Stout (2012), an

academic from the school of nursing in the University of British Columbia describes this western
paradigm as “ascribed health and wellness” that is firmly positioned in a dominant colonial
pattern of oppression that has “disconnected and dislocated individuals, families, and

communities; and rendered [them] complacent, fatalistic, and unwell by past injustices” (p. 1112). Thus, health reporting for Indigenous populations is mostly a deficit-discourse structured

within the empiric paradigm of western natural sciences.
This western scientific worldview has achieved a hegemonic dominance as the only
legitimate interpreter of natural phenomena primarily due to technological achievement (Morley
& Wallis, 1978). Increasingly nursing research approaches have shifted from this preeminent

positivistic science perspective to humanistic, interpretive, and phenomenological approaches to
scientific inquiry within this western scientific worldview (Arnold & Bruce, 2005). Nursing
scholars are increasingly attempting to understand and make explicit phenomena of interest
through other epistemologies, ontologies, methodologies, and axiology’s (Arnold & Bruce,
2005). However, nursing practice is mostly situated within the biomedical approach to healthcare

and its foundational empiric paradigm remains in a privledged and dominant position (Arnold &

Bruce, 2005; Morley & Wallis, 1978; Prodan-Bhalla et al., 2016).

Applied to Indigenous health this dominant structure frames Indigenous people’s health
and wellness onto western ontology and epistemology. Thereby, perpetuating an ethnocentric

3

worldview perspective of reality and knowledge framed within a western cultural conceptual
system or worldview. Therefore, palliative care service provision from the dominant biomedical

model and concomitant deficit discourse, limits understanding of Indigenous people’s

perspectives and is contradictory with some Indigenous people’s philosophical assumptions
(Arnold & Bruce, 2005, Prodan-Bhalla et al., 2016). For some health care providers (HCPs)

differences in worldviews may lead to “frustration, domination, and oppression” resulting in
further health inequity for some Indigenous people. (Arnold & Bruce, 2005, p. 259).
Humanist dialogue from the World Health Organization (WHO) and domestically call for
the amelioration of pain and suffering associated with death and dying (Connor, 2020). The
international focus is on improving universality and accessibility of palliative care, through the
integration of palliative services into primary healthcare and community/home settings (World
Health Organization [WHO], 2021a, 2021b). Increasingly the WHO and others stress the

importance of achieving health equity gains in Indigenous health through the recognition of the
right of Indigenous people to access all available health services and the right to achieve the

same standard of health as non-Indigenous populations (United Nations [UN], 2015). Indigenous
palliative care and Indigenous health equity are thus explicitly recognizing internationally under
human rights to health (Connor, 2020; Shahid et al., 2018; UN, 2015; WHO, 2021a).

Despite this recognition and promotion of healthcare (including palliative care) as a basic
universal human right, there is ample evidence in Canada and internationally to the contrary
(Caxaj, Schill, & Janke, 2018; Schill & Caxaj, 2019; Shahid et al., 2018). In the developed

countries of Canada, the United States, New Zealand, and Australia, Indigenous people living
with life limiting conditions, experience unmet palliative healthcare needs due to problems with
accessibility, and the provision of cultural acceptable, and accommodating care delivery in

4

comparison to non-Indigenous people (Caxaj et al., 2018; Schill & Caxaj, 2019; Shahid et al.,
2018).

Renewal of primary healthcare (PHC) is promoted to improve accessibility and to
achieve health equity for socially disadvantaged and vulnerable populations (Richard et al.,
2016; Wong et al., 2011). Health equity is a social responsibility of PHC and is founded upon the

values of fairness and social justice (WHO, 2008). Healthcare planners have promoted nurse

practitioners as an “essential components of primary healthcare reform” and are proposed as a
means “to improve the publics access to high quality care at a cost savings to the system”
(Browne & Tarlier, 2008, p. 88). Browne and Tarlier (2008) further, argue that nurse

practitioners offer a value-added benefit from “the social justice aspects of the role in the context
of illness treatment, health promotion and prevention services” with less emphasis upon the
“medical-curative aspects of their role”; thereby, increasing accessibility for vulnerable and
marginalized populations and realizing improved health equity through a social justice approach
to primary practice (Browne & Tarlier, 2008, p. 87). This value-added benefit of nurse

practitioner’s is predicated upon relational inquiry and the bridging of human emotional and
spiritual factors in holistic care delivery (Prodan-Bhalla et al., 2016). Nurse practitioners can
relieve suffering associated with life limiting conditions through offering primary palliative care
in all care settings (Wheeler, 2016). Thus, nurse practitioners are well placed within the

healthcare system to facilitate accessibility, and the provision of cultural acceptable and
accommodating palliative care delivery for Indigenous and non-Indigenous populations.
Research has identified reduced uptake of palliative care services by Indigenous people in
Canada, the United States, New Zealand, and Australia, countries with similar histories of

occupation and colonization (Shahid et al., 2018). International reasons for this reduced uptake

5

have been attributed to disrespectful and racist treatment of Indigenous people and to differences

in health beliefs and cultural understanding of disease management, death, and dying between
Indigenous patients and HCPs/policy makers (Shahid et aL, 2018). A recent example of this

racist behaviour in healthcare comes from a hospital setting in Quebec, with the videotaped racist
taunts of health care workers and subsequent death of Joyce Echaquan (Turpel-Lafond, 2020).

Some cultural beliefs in relation to death, dying, palliative care and conceptualization of
health and wellness are dissonant between Indigenous and non-Indigenous perspectives (Shahid
et aL, 2018). These differences of perception between cultural groups are attributable to

differences in underlying worldviews (Sharma, 2007). People from different cultures, when

placed in the same situation are likely to have different perceptions of the situation due to
foundational assumptions and culturally mediated emphasis or suppression of culturally

important construct elements in their distinct worldview (Ingold, 2011). Conceptually,
worldviews underly shared and learned cultural beliefs, judgements, values, and assumptions
about reality, knowledge, and ethics that implicitly inform a cultural perspective on how the
world works and how we see ourselves within it (Arnold & Bruce, 2005; Robbins, Cummings, &

McGarry, 2017). Thus, the conceptual system of a worldview is mostly implicit in character
making it difficult to see (Ingold, 201 1 ; Lakoff & Johnson, 1980; Robbins et aL, 2017). In order
to understand and explain differences in worldviews, a method is needed to be able to make the

unseen conceptual system visible.

Lakoff and Johnson (1980) assert that a cultural conceptual system is “fundamentally
metaphorical in nature” and manifests in language, thoughts, and action, but is unconscious to
the individual (pg. 3). Human communication is predicated upon the same conceptual system

that manifests in how we understand experiences through language (Lakoff & Johnson, 1980).

6

Therefore, language becomes an important vehicle to reveal the implicit nature of our conceptual
system that underlies our distinct worldview. Metaphor structures language and permits us to

understand our reality from the concrete to the abstract by using meaning from one domain of

experience and extrapolate it upon another (Lakoff & Johnson, 1980; Robbins et aL, 2017).
Thus, analysis of dialogue is a means to generate further understanding of how the conceptual
system of a worldview functions or is operationalized.

The dialogue accompanying the summative themes in this review are framed according to

Hiebert’s Worldview Model (as cited in Sharma, 2007). The voiced perceptions of participants
are thus categorized into Hiebert’s dimensions of culture. Framing perception into the cognitive,

affective, and evaluative dimensions of culture; thereby, providing a means to view nine features

of a distinct worldview. These features include the cultural conceptualization of time, self¬
concept, space, feeling, preferences, sensory perception, food, beliefs, emotion, and ethics,
values, and judgement (Sharma, 2007). The idea of this approach is to enable the reader to arrive

at an understanding of some of the underlying cultural assumptions that underly the heart of a

worldview and thus allows comparison of elements between worldviews. Atleo’s (2004) ‘Theory

of Tsawalk a Nuu-chah-nulth worldview” is an explicit documented Indigenous worldview
utilized to facilitate potential understanding of some of the patterns in this review’s findings.
This method is used to make visible the affect worldviews have upon the accessibility and

cultural acceptability of palliative care service delivery to some Indigenous people in Canada.
Situating Myself

To begin this discussion, I locate myself as a learner mindful of my discipline’s
philosophical tradition and positing of an ontology of multiple subjective realities with a
humanist epistemology where understanding and meaning of phenomena is ascribed to lived

7

experience within a western scientific worldview. I am a third-generation settler of English and

Ukrainian roots with ancestors arriving in Canada in the 1890’s, and 1900’s respectfully. I am
native to Canada, bom in Regina, Saskatchewan (SK) and I am not Indigenous to the unceded
territories of the Metis nation I was born on nor the Kwak-wak-awak, Nuu-chah-nulth, and Coast
Salish tribes that I live on.

My interactions with Indigenous people are as friends, colleagues, and professional
encounters as a registered nurse and family nurse practitioner student. Indigenous health equity

and social justice are concerns of the University of Northern BC’s (UNBC) Family Nurse
Practitioner program (FNP) and driven by curiosity I have engaged in this “An Exploration of
Indigenous Peoples Worldviews and Palliative Care: An Integrative Review” process to facilitate
my own personal exploration into the scholarship to inform my nurse practitioner family

practice. I approach this project as an Indigenous ally, acknowledging the four R’s: Respect,
Relevance, Reciprocity and Responsibility. Respect for Indigenous people’s ontologies and

epistemologies. That I am open to cultural safe practice and that I respect diversity, inclusion,
and shared space. I acknowledge the differences between and within cultures. That this inquiry is
relevant to the pursuit of health equity and social justice. That I engage in the cultural relevance

of understanding and acknowledging the history and context of the communities that I work and
live in. That I engage in reciprocal relationships with Indigenous peoples and the reciprocal
sharing of knowledge. That I am responsible to not perpetuate further health inequity. That I am

responsible as a practitioner to build relationships. I offer what I have learned with humility, as I
undertake my journey of understanding and meaning making of culturally safe and trauma
informed end-of-life (EOL) care with Indigenous people.

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Integrative Review

The purpose of this integrative review is to synthesize findings from primary studies to
enhance understanding of the phenomenon of interest, critically summate past research and

arrive at conclusions that will inform research, practice, and policy (Whittemore & Knafl, 2005).
The integrative review method allows for the incorporation of multiple methodologies and

presentation of diverse perspectives to develop evidence-based nursing practice (Whittemore &
Knafl, 2005). Researchers have identified reduced uptake of palliative care services by

Indigenous people with distinct worldviews as a phenomenon of interest and in need of further
understanding of how worldviews affect palliative care service provision (Kelly & Minty, 2007 ;
Schill & Caxaj, 2019; Shahid et al., 2018). This integrative review seeks to explore the reduced

uptake of current palliative care delivery and how an understanding of distinct worldviews can
be used to inform the current palliative care delivery gap through the following research

question:

•

How does a worldview affect the delivery of palliative care services to Indigenous
people living with life limiting conditions?

In this integrative review I provide a background and context for Indigenous people in
Canada, for Canadian Indigenous health equity, for the social determinants of health, for

palliative care, for nurse practitioner palliative care, for Indigenous palliative care, and for the
integration of palliative care into primary care. I explain my theoretical framework and use of the
dual method of thematic summation and Hiebert’s Worldview model within the overall design. I
describe seven theme findings and nine worldview model features. I discuss these findings and

features within palliative care delivery in Canada and utilize Atleo’s (2004) theory of Tsawalk as
a guide to further understanding. I provide conclusions and recommendations for clinical

9

practice, policy, and research. Finally, I point out limitations in the existing research and indicate

directions for future research. Development of an understanding of how diverse worldviews
intersect with care delivery is crucial to closing the health equity Indigenous palliative care gap.
Considering increasing demand and continued health equity challenges for some Indigenous

people this review promotes greater awareness of cultural considerations of care and
progressively better quality of life in dying.

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CHAPTER ONE
Background

The Canadian federal government is responsible for the delivery of health care to groups
which fall under its jurisdiction which include Aboriginal people (Madore, 2005). The 1867
“British North America Act” defined Indian affairs as federal jurisdiction and health services as

provincial jurisdiction, thereby creating ambiguity as to who is jurisdictionally responsible for
Aboriginal health (Lavoie, 2011). Importantly, no other healthcare ambiguity exists for the other
groups that falls under the federal government’s jurisdictional responsibility. Ambiguity between

federal and provincial jurisdictional responsibilities has resulted in legislation referred to as

‘Jordan’s Principle’ (Lavoie, 2011). Jordan River Anderson was an Aboriginal child from
Manitoba’s Norway House, Cree Nation who was bom with a debilitating neuromuscular
disorder and spent his whole life in hospital due to a dispute between the federal and provincial
governments as to who was responsible for paying for his home care (Lavoie, 2011). Jordan’s

Principle states that in cases of a jurisdictional disputes for Aboriginal children the government
of first contact will pay for services and pursue cost sharing later; however, difficulties persist
with implementation of Jordan’s Principle (Lavoie, 201 1).

The federal government delivers health services through the First Nations and Inuit Health
Branch providing limited public health and prevention services to status Indians living on reserve
and Inuit living on home territories (Lavoie, 2011). Non-insured health benefits including

prescriptions, dental and vision coverage for all status Indians and Inuit, but not Metis people
(Lavoie, 2011). The federal government defers physician and hospital services for on and off

reserve Aboriginal people to their respective provincial or territorial jurisdiction (Lavoie, 201 1).

Provinces and territories are responsible for health care delivery and administration of the public

11

healthcare insurance plan for physician and hospital services in each respective jurisdiction
(Madore, 2005). The “Canada Health Act” (1984) primary objective is “...to protect, promote,

and restore the physical and mental well-being of residents of Canada and to facilitate reasonable
access to health services without financial or other barriers” (Canada, 2021). The federal
government funds the program through the Canada Health Transfer program, providing that the

provinces and territories fulfill the Canada Health Acts five criteria and two conditions: public
administration, comprehensiveness, universality, portability, accessibility, and the two conditions

of federal recognition and information (Government of Canada, 2004, 2021). The Canada Health
Act (1984) interprets reasonable access in the principle of accessibility as “the residents of a

province or territory are entitled to have access on uniform terms and conditions to insured
health care services at the setting where the services are provided and as the services are
available in that setting”; therefore, all residents of the province should have equal access to
wherever the service is being offered (Government of Canada, 2021, p. Section 12).
This principle of health equality guides most western countries healthcare systems and aims
to offer equal access to health services from the assumption that people have equal capacity to

access care (Garneau, Browne & Varcoe, 2019). Equality and fairness are important western
values operationalized in healthcare delivery that aim to treat everyone the same irrespective of
social circumstances (Garneau et al., 2019). Thus, the equality discourse in health care

perpetuates the belief that individuals have equal agency and responsibility for their social

position and behavior irrespective of their circumstances (Garneau et al., 2019). The equality in
practice ethos thus perpetuates inequity by failing to acknowledge systemic structural issues
which include the asymmetrical power difference between provider and patient, and a lack of
accounting for the systemic structural violence in marginalized peoples lives (Garneau et al.,

12

2019). Thus, health equality without the primacy of health equity and social justice does not
address the intersection of people’s health and social needs and perpetuates further injustice
(Garneau et al., 2019). An example of this equality ethos is the further traumatization of some

Indigenous people by the provision of specialty palliative care in Institutional settings (Gott et
al., 2018) for people living with trauma from their residential school and Indian hospital

experiences (Kelly & Minty, 2007).
Indigenous people in Canada

In Canada there are approximately 70 surviving Indigenous languages not including dialects,
derived from 12 language families including; Algonquian (N=143 160), Athapaskan (N=18 785),

Iroquoian (N=l 485), Salishan (N=2 870), Inuit (N=37 715), Tsimshian (N=l 725), Wakashan
(N=l 060), Siouan (N=4 605), Haida (N=135), Tlingit (N=120), Kutenai (N=l 15), and

Aboriginal language not otherwise specified (N=735) (Government of Canada, 2017a, 2017b;
McMillan & Yellowhom, 2004). In the 2016 Canadian census 228 765 people spoke an
Aboriginal language at home, which was greater than those with an Aboriginal language as a
mother tongue (Government of Canada, 2017c). This difference suggesting more people are
learning an Aboriginal language as a second language (Government of Canada, 2017b). The
cultural differences between these languages families have been likened to the differences
between “English and Arabic” (McMillan & Yellowhom, 2004, p. 5). Indigenous people’s health
and wellbeing for millennia were sustained by a balanced reciprocal relationship with their
environment from which they obtain nourishment, sustenance, medicine, and a place where
culture, knowledge, norms, and values were shared (Food and Agricultural Organization [FAO],
2019). Each Indigenous group is a uniquely evolved adaptation to their local eco-system which

informed and shaped their cultural identity through a deeply connected sense of place and group

13

belonging (Tobias & Richmond, 2014).

In 2016, there were approximately 1 670 000 individuals self-identifying as Aboriginal
people, representing 4.9% of the total Canadian population and of this total, First Nation people
represent 60%, Metis people 36% and Inuit people 4% (Organization for Economic Co-operation

and Development [OECD], 2020; Statistics Canada, 2017). There are more than 630 First Nation
communities, not including Metis communities, and 53 Inuit communities in Canada
(Government of Canada, 2009; OECD, 2020). Warry (2007) notes word choice denotes political

orientation and potential bias, thus the terms Indigenous, Aboriginal, Indian, First Nation, Metis,
Inuit and other classifications of likeness or sameness, all denote homogeneity for very
heterogenous groups and mask individual people’s self-identity and their unique characteristics
and attributes. There are very important historical, social, political, and geographic differences
between the three groups represented by Aboriginal in Canada: First Nation, Metis, and Inuit
(Government of Canada, 2009; OECD, 2020; Statistics Canada, 2017). Thus, caution is

warranted with classifications of sameness, though some similar characteristics or attributes may
be identifiable between individual groups. Many differences exist and extrapolation between

groups may or may not be accurate or appropriate.
Many Indigenous people voice a history of caregiving traditions, where end of life care and
death occurred at home with family caregivers in traditional territory (Colclough & Brown,
2019; Dembinsky, 2014; Gott et al., 2018). Some Indigenous perspectives on health and

wellbeing are described as holistic in the extant literature encompassing a view of health and
wellbeing being more than the absence of disease, with a grounding in the physical, emotional,
mental, and spiritual dimensions of the person, their family and community (Browne et al., 2009;

Prodan-Bhalla et al., 2016). For millennia EOL care occurred at home, with family caregivers,

14

and in the end, death occurred at home within the community on traditional territory (Colclough
& Brown, 2019; Dembinsky, 2014; Gott et al., 2018). Colonization has transitioned the place of

dying from home to hospital and from family caregiver to HCP; thereby, transitioning care
delivery to that of a biomedical health model of care (Prodan-Bhalla et al., 2016). The underlying

assumptions of these two worldviews are not the same (Malpas et al., 2017). The vision seen
through each lens is different, and it is this difference that influences palliative care delivery.
Canadian Indigenous health equity

The implicit argument in Indigenous health is that Indigenous health inequalities result from
the interaction of socioeconomic, cultural, and historical factors (King et al., 2009). Thus, health
inequity is differences in health status, and access to healthcare that result from unjust systematic
structural arrangements (Wong et al., 201 1). These unjust factors need meaningful remediation
to achieve health equity with non-Indigenous populations. Health equity is the absence of these

systematic remedial differences in one or more health characteristics across population groups,
constituted socially, economically, or geographically (Wong et al., 2011). Systemic Indigenous
discrimination driven by European ethnocentrism is an example of an unjust systematic
structural arrangement (Browne et al., 2012; Turpel-Lafond, 2020). Decolonization and
mitigation of structural violence (Prodan-Bhalla et aL, 2016), along with improvement in the
social determinants of health (SDOH) are proposed means to achieve greater health equity in
Indigenous populations (Reading & Wien, 2013; Reading & Halseth, 2013).
The United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP) affirms
Indigenous people’s right to healthcare and wellbeing explicitly in Article 24, Para 1 “Indigenous

peoples have the right to their traditional medicines and to maintain their health practices . ..
Indigenous individuals also have the right to access, without any discrimination, to all social and

15

health services,” and para two “Indigenous individuals have an equal right to the enjoyment of
the highest attainable standard of physical and mental health (UN, 2015, p. 18). Despite this
global proclamation of health care rights and concomitant responsibilities of nations, Indigenous

people continue to have health disparities compared to non-Indigenous people in many parts of
the world including Australia, Canada, New Zealand, and the US, all countries with a similar
history of colonialism (Shahid et aL, 2018). The “Royal Commission on Aboriginal Peoples”
(1996) notes in its opening that how Canada relates to the original historical nations of this

country “defines in a large measure its [Canada’s] sense of justice and its image in its own eyes

and before the world” (Dussault et al., 1996, p. 6). In Canada, despite efforts to provide high
quality health care, Indigenous people still have persistent social and health disparities compared
to non-Indigenous people (Kim, 2019, Reading & Wien, 2013).

Social determinants of health

The WHO attributes health inequities to the societal conditions from which “people are
bom, grow, live, work and age, referred to as the social determinants of health” (WHO, 201 1, p.
2). The SDOH is a framework to conceptualize the origins of social and health disparities

experienced by vulnerable populations and are used to explain health-related behaviors, physical
environments, and socioeconomic status (Kim, 2019; WHO, 2011). In 2018, de Leeuw argued
that the SDOH model is an improvement over the biomedical model of health, but of itself does
not fully explicate all the factors that explain Indigenous people’s health inequity; and the land or

a geography of place is an essential component that must be considered in any true

understanding of Indigenous people’s health. Likewise, Nesdole, Voigts, Lepnurm, and Roberts
(2014), argue that a First Nation derived SDOH model, is more appropriate for Indigenous

contexts due to divergent worldviews. Furthermore, they argue that the SDOH model (as

16

employed by Health Canada) is inappropriate as it does not address First Nation people’s

dispossession from cultural traditions, spirituality, and sense of purpose (Nesdole et aL, 2014).
They state that a First Nation derived model addresses all aspects of spiritual, emotional,
physical, and mental connection to nature (Nesdole et aL, 2014). In this context Indigenous

holistic health is related to relationship with land and the nature, but as a singularity not a plural
entity.
Reading & Wien (2013), and other authors, describe health disparities within Indigenous

peoples compared to non-Indigenous peoples and assert that inequalities in the SDOH are
primary barriers that perpetuate health inequity. In order to understand the relationships between
social determinants and their affect upon the physical, emotional, mental, and spiritual
dimensions of health among Indigenous peoples, Reading and Wien (2013), promote a

conceptual framework the “Integrated Life Course and Social Determinants Model of Aboriginal
Health.” A temporal ecological model linking the provenance of social determinants at proximal,
intermediate, and distal levels of influence (Reading & Wien, 2013). Distal determinants are

characterized as colonialism, racism, and self-determination, intermediate determinants as
system level influences like health care system, education system, community, environmental

stewardship, and cultural continuity, and proximal determinants as social scale direct health
related behaviours, physical environments, and socioeconomic status (Kim, 2019; Reading &
Wien, 2013). Contemporary understanding of Indigenous health inequity attributes causation to

the effects of colonization and the resulting socioeconomic marginalization that is reflected in
the SDOH (King et aL, 2009). To promote a greater understanding of Canadian Indigenous

peoples palliative care it is important to recognize the influence colonialism has upon the lives of
Indigenous people.

17

Colonialism. Canadian Indigenous people and European people have had ongoing
contact and relationships for the past 500 years and this history needs to be acknowledged and

accounted for in any true understanding of contemporary Indigenous people’s health (Browne &

Varcoe, 2006; Dussault et aL, 1996). Early relationship between Indigenous societies and

Europeans were characterized by Indigenous people’s assistance, the establishment of trading
relations, military alliances, intermarriage, and mutual cultural adaptation (Dussault et al., 1996).

Each was a distinct society with their own social, cultural, and political identities responsible for
their own internal affairs (Dussault et al., 1996) and related to each other “different but equal”
(Warry, 2007, p. 53). Concurrent issues at this early period included incidents of conflict,

population growth of non-Indigenous people, and drastic decline in Indigenous populations due
to communicable disease (Dussault et al., 1996).

Increasingly the growing European settler society disrespected Indigenous society and
dominated the political and economic aspects of Indigenous people’s life culminating with the
cultural imposition of European assimilationist policies: pacification, relocations, reserves,
residential schools, Indian hospitals, 60’s scoop, and promulgation of the 1969 white paper
(Dussault et al., 1996; TRC, 2015a). These colonial policies and practices have devastating

social and health sequela on Indigenous peoples through environment dispossession
characterized by displacement, environmental contamination, suppression of culture, loss of
livelihood, forced assimilation, resource extraction, land right disputes (Big-Canoe & Richmond,

2014; Tobias & Richmond, 2014), and the disruption of some Indigenous peoples sense of place

and identity (Gracey & King, 2009; Tobias & Richmond, 2014; Valeggia & Snodgrass, 2015).

Upon first contact Europeans looked to Indigenous peoples for food and shelter, and then

economic benefit through the fur trade (Dussault et al., 1996). Initial treaties between Indigenous

18

people and Europeans were diplomatic processes used to reach political accommodation for
peaceful co-existence, and mutual sharing of resources and lands (Dussault et al., 1996). During
the early period when Indigenous populations outnumbered Europeans in North America, treaties
between Indigenous nations and European nations were founded on a relationship of mutual
respect and nation recognition negotiated for “peace, trade, alliance, neutrality and military

support” (Dussault et al., 1996, p. 160). Once European populations began to surpass Indigenous

populations, the formation of colonial authority superseded earlier diplomatic relationships, to
one of domination with the claim of sovereign authority over all Indigenous nations (Dussault et

al., 1996). Differences arose in interpretation of treaties due to different cultural traditions,

differences in communication (oral vs written), and divergent worldviews (Dussault et al., 1996).
Colonial authority physically displaced Indigenous communities from their traditional

territories to make more land available for European settlement and denied access to traditional
territories (Dussault et al., 1996). Social and cultural displacement followed with intensive
missionary activity and the formation of schools to impose male-orientated Victorian values
while disrupting the transmission of traditional cultural knowledge between generations
(Dussault et al., 1996). Political displacement occurred through undermining traditional political

processes and the imposition of colonial-style municipal institutions (Dussault et al., 1996).
The Constitution Act, 1867, section 91(24) made “Indians, and Lands reserved for the
Indians” the responsibility of the federal government and was operationalized in the Indian Act
and subsequent policies of assimilation (Dussault et al., 1996), and cultural genocide of
Indigenous peoples (MMIWG, 2019; TRC, 2015). The practice of setting aside plots of land for
Indian settlement began with the French in 1637 and was used as a precedent by the British in
Ontario to establish “serviced settlement sites, complete with houses, bams, churches and

19

schools” to promote and adopt Christianity (Dussault et al., 1996).
After confederation the treaty processes continued through legislated dispossession
primarily in the Indian Act which removed control and management of lands and resources from
Indigenous peoples (Dussault et al., 1996). Through the legislation and policies of the Indian Act
the Government of Canada attempted to eliminate Indigenous governments, deny Indigenous
rights, abolish the treaties, and extinguish Indigenous peoples “distinct legal, social, cultural,
religious, and racial entities in Canada” (TRC, 2015a, p. 3).
The residential school system caused family separation and spiritual and cultural
dissociation during childhood and adolescence with the disruption of knowledge, norms, and
values (Kim, 2019). Seven generations of Indigenous children were removed from their families
to “extinguish their culture, language and spirit” in an effort of forced assimilation and

government policy of cultural genocide,” Justice Murray Sinclair (TRC, 2015b, p. vii). Cultural

genocide refers to the destruction of political and social institutions and structures of a group and
the practices that enable a group to be a group (TRC, 2015b). Canada has engaged in the

activities of cultural genocide by targeting Indigenous people through land appropriation, forced
movement of populations, language suppression, persecution of leaders, the banning of spiritual

practices (Ghost dance, Potlach), and seizure of culturally significant objects (TRC, 2015a).
These actions have induced extreme emotional and physical stress on Indigenous parents and
children and resulted in a significant loss of cultural identity through the loss of their native
language and practicing of cultural customs (Kim, 2019).
This colonial legacy is manifest in social marginalization, economic impoverishment,

political disadvantages, and health inequity for some Indigenous peoples (Kim, 2019). Thus, in
Canada, some Indigenous people suffer from a disproportionate increased morbidity and

20

mortality compared to non-Indigenous people which drives the need for primary and palliative
care services (Gracey & King, 2009; Kim, 2019; King et al., 2009; Reading & Wien, 2013).

Causes for reduced uptake of palliative care are attributable in part, to palliative care being
perceived as colonial in nature (Gott, et aL, 2016), and the historical provision of palliative care

in institutional settings may be traumatizing for some patients living with prior trauma from
residential schools and Indian Hospitals (Kelly & Minty, 2007).
Racism. According to Turpel-Lafond (2020), racism is defined as the belief that one
group of people are inferior based upon their cultural background or color of their skin. In racism

against Indigenous people the belief stems form European settler ethnocentrism or the belief and
feeling that settler culture and western worldview is superior to all others (Spradley & McCurdy,
2012). This ethnocentrism is manifest through judgement of Indigenous peoples’ beliefs and

behaviours rendered though a settler cultural lens (Spradley & McCurdy, 2012). Belief that
another group is inferior leads to discriminatory behaviors and prejudicial practices, and when
normalized across society become systemic racism (Turpel-Lafond, 2020). Indigenous people are
still exposed to systemic racism especially within the healthcare system, and this increases their
vulnerability to illness while reducing their capacity to respond to this illness (Reading & Wien,
2013; Turpel-Lafond, 2020). Some reduced uptake of palliative care services is attributed to

disrespectful and racist treatment of Indigenous people in healthcare (Shahid et al., 2018). Kelly
and Minty (2007) in a literature review of EOL issues for Aboriginal patients, found that

respectful interpersonal relationships with family, community, and culture where a basic

prerequisite for the delivery of culturally appropriate Indigenous palliative care.
Self-determination. Colonial control over social, political, and economic development

has reduced some Indigenous people’s self-determination and to achieve greater health and well-

21

being Indigenous people need the capacity to participate in equal political decision making, and

exercise control over their territories, economies, education, social services, and healthcare
system (Reading & Wien, 2013). Evidence suggests a relationship between individuals control

and agency, community self-determination, and health outcomes (Reading & Wien, 2013). In
Indigenous PHC and by extension primary palliative care opportunities for self-determination

include control of health service delivery, employment, education, and community development
(Harfield, et al., 2018).

Healthcare systems. Some Indigenous beliefs on health are dissonant with the western

abstract conceptualization that health is a state to be achieved versus a harmony or balance
within a holistic frame of multidimensionality of physical, spiritual, emotional, and mental health
dimensions (Reading & Wien, 2013). Dissonance between perspectives decreases the
effectiveness of the biomedical approach that focus upon the physical dimension of health to the
exclusion of all other dimensions. The healthcare system is built upon the premise of equality for
all Canadian residents and does not account for group differences in physical, political, and

social access to services (Reading & Wien, 2013). Social access to the healthcare system is
limited or denied to Indigenous peoples when services are not culturally appropriate, or services

are not offered in the user’s native language; thereby, rendering them inaccessible (Reading &
Wien, 2013). Inadequate access to PHC is associated with worse population health outcomes in

general and worse outcomes for chronic or continuing medical conditions (Wong et al., 2011).
Primary care attachment is an alleviating strategy to reduce healthcare disparity in Indigenous

populations (Reading & Wien, 2013; Turpel-Lafond, 2020; Wong et al., 2011). Nurse
practitioners are well positioned within the healthcare system to ameliorate this inaccessibility
through the practice of culturally safe longitudinal PHC (Brown & Varcoe, 2006).

22

Kelly and Minty (2007) in their literature review of EOL issues for Aboriginal patients
found acceptance of medical advice from physicians out of respect for their parallel role as that

of traditional healers. They also found the importance of truth telling and maintenance of hope as
family may have the belief that there is harm in telling their loved one the seriousness of the
diagnosis or by discussing terminal illness or death.
Education systems. Like social access to healthcare, education access is limited or

denied when culturally appropriate curriculum is underfunded or not offered; thereby, decreasing
enrolment and retention which produces an intergenerational cascade effect upon income,
employment, and overall living conditions (Reading & Wien, 2013). Evidence suggests benefit

in culturally competent curricula yet most offered programming within the education system fails
to offer Indigenous cultural content (Reading & Wien, 2013). Indigenous epistemologies are

predicated upon oral tradition knowledge dissemination (Overmars, 2010), and some
intergenerational cultural EOL practices, rituals and beliefs have been disrupted by colonial

practices.
Community. Community influences the health and well being of Indigenous people

through enabling or disabling individuals through economic development and opportunities
(Reading & Wien, 2013). Limitations in infrastructure and resource development combined with

poor education and training opportunities results in inadequate social resources within a
community and limited capacity for program development and operationalization (Reading &
Wien, 2013). Thereby, perpetuating a negative feedback loop preventing community

optimization and concomitant support of individual self actualization. Disrupting this cycle is
essential for Community development and capacity building. In palliative care the public health

approach situates the patient with life limiting illness within a community-based network of

23

friends and family with support from health system services (Prince et al. 2019). This approach
has promise to building community-based accessible and culturally appropriate and
accommodating care for some Indigenous communities (Prince et al. 2019).
Environmental stewardship. Likewise, loss of political control over traditional territory

through dispossession reduces Indigenous people’s stewardship over their traditional

environment (Reading & Wien, 2013). The lack of renumeration from natural resource
extraction and the associated contamination of fish, wildlife, land, and water through this
resource development contributes to the ill health experienced by some Indigenous communities

(Reading & Wien, 2013). Loss of fair share of revenues from resource development on
traditional territories reduces health care capacity and by extension palliative care community
capacity through limiting available community resources.
Cultural continuity. The degree of social and cultural cohesion within a community

defines the concept of cultural continuity and is propagated through intergenerational
connectedness (Reading & Wien, 2013). Research demonstrates that the degree of cultural
continuity is an important determinant of health, and a greater degree of continuity is associated
with greater health (Reading & Wien, 2013). As noted in education, oral tradition is the primary

method of Indigenous knowledge transmission and residential schools have significantly

impacted this transmission (Overmars, 2010). Kelly and Minty (2007) in their literature review
of EOL issues for Aboriginal patients found a high belief in valuing Elders for their participation
in decision making and contribution of wisdom and experience to palliative care delivery.

Health behaviors. Contemporary health promotion and prevention activities aimed at
improving health equity for Indigenous peoples often focus on the individual at the proximal
level (biomedical model

—behavioral modification and education) from a westernized way of

24

being (ontology) that separates people and non-human life, or culture and nature; and is a

perspective that is incongruent with Indigenous ways of knowing (epistemology) and being
(ontology) (Huambachano, 2018; Panelli and Tipa, 2009). The biomedical model of health is

based upon the assumptions that people are responsible for their own health behaviours and
social position within a society. This view does not account for or attempt remediation of the
SDOH that research has shown affects a person’s health and social position (Reading & Wien,
2013). Health behaviors need to be understood within a sociopolitical context in order to

mitigate the biomedical model distortions common to a deficit-based discourse. Positive care

experiences with community connection and involvement with palliative care (Kelly & Minty,
2007), and the development of community-based education programing with role modeling and
story telling offers promise in mitigating health behaviours (Overmars, 2010).

Physical environments. Reading and Wien (2013), argue that the physical environment

imposed upon Indigenous people from colonial dispossession of traditional territory and
imposition of reserve and settlement structures is a primary determinant of Indigenous people’s
health outcomes. Furthermore, the net outcomes of this structural imposition include housing
shortages leading to chronic overcrowding on reserve, and homelessness for Indigenous people
in urban settings (Reading & Wien, 2013). Food insecurity is another pervasive outcome of this

structural arrangement due to challenges in obtaining traditional and market foods (Reading &
Wien, 2013). When it comes to palliative care physical environments can enable or disable home

hospice efforts or the provision of palliative care in the patient’s own home.

De Leeuw (2018) argues that the SDOH are an improvement over the biomedical model
of health, but in of themselves due not fully explicate all the factors that explain Indigenous

people’s health inequity; and that the land or geography of place must be taken into account in

15

any true understanding of Indigenous people’s health. De Leeuw (2018), states that geography is

a discrete lens through which to understand health disparities separate and beyond the SDOH.
Furthermore, she positions “geography as a physical and material entity

—place, earth, land,

space, ecology, territory, landscape, water, ground, soil, and the like...” (de Leeuw, 2018, pp.
187-188). This physical environment is independent of being “human-centered and human

created” and separate from human being-ness that is “animate and powerful, constitutive of
human life,” and “that has eminence in Indigenous ways of knowing and being in the world” (de

Leeuw, 2018, pp. 192-193). In short, the physical and spiritual worlds have agency upon
humanity and are at the core of Indigenous ways of knowing (epistemology) and being
(ontology). Thus, the Indigenous epistemology and ontology of individual Nations must be
accounted for in the provision of culturally acceptable and accommodating palliative care. In the
next sections I will briefly review what is meant by palliative care, the role and provision of this

service by nurse practitioners, and what is documented on Indigenous palliative care in
international and domestic contexts.
Palliative care

According to Health Canada the tenn palliative care emerged in the 1970s as a medical
specialty service in hospital settings, primarily concerned with cancer patients when death is
imminent in the last six months of life (Canada, 2018; Rocker et al., 2016). Hawley (2017) in
“Barriers to Access to Palliative Care” states that palliative care was coined by a Canadian
urologist in the 1970’s to shift stigma from the tenn hospice, which historically been associated
with the destitute in francophone society. A conceptual drift occurred into a more philosophical

ethos and approach to the care of people with life limiting but incurable conditions and not
imminently dying (Cleary, 2016). The term evolved from EOL cancer care to include all people

26

living with life limiting conditions. In 2002 the WHO updated their definition as:

“An approach that improves the quality of life of patients (adults and children) and their
families who are facing problems associated with life-threatening illness. It prevents and
relieves suffering through the early identification, correct assessment and treatment of
pain and other problems, whether physical, psychosocial, or spiritual” (Connor, 2020, p.
13).

Additionally, there is a push for the integration of palliative care into usual care practices

instead of reserving palliative care for cases of treatment failure or as a replacement for usual
care (Cleary, 2016). There is a body of evidence that palliative care service implementation

improves patient symptom control and quality of life (Hawley, 2017). Palliative care services
include the serious illness conversation, goals of care and advanced planning discussions,
ongoing clarification of prognosis and treatment options, physical, psychosocial, and existential
symptom management, diagnosis and management of treatment related conditions, collaboration,

and consultation with interdisciplinary services, provision of caregiver support, and the provision

of EOL and bereavement care (Bishop, Taylor, Akyar, and Bakitas, 2021; Lewis, 2020). Nurse

practitioner strengths in palliative care service provision are in the coordination with
interdisciplinary services (Lewis, 2020) and in an empowering approach to practice through the

use of relational inquiry, health promotion, and patient involvement in self care (Williams &
Sidani, 2001). Palliative care encompasses hospice care which has historically been focused on

the last three to six months of life in residential and home hospice settings (DuBois & Reed,
2014; Hawley 2017).

In Canada palliative care is evolving from an EOL specialty palliative care service in
hospital, associated with dying cancer patients, to that of a palliative approach earlier in the
disease process with life limiting conditions (Morrison, 2018). Nationally, palliative care of
chronic illness is underdeveloped in Canada and remains inaccessible to some Indigenous and

27

non-Indigenous people (Morrison, 2018). General barriers to accessing palliative care include
knowledge deficits in both HCPs and the public as to the benefits and timing of when to access

palliative care, shortages of qualified providers, a lack of infrastructure, a lack of care delivery
models, and an inadequate evidence base (Morrison, 2018; Rocker et al., 2016). Indigenous

people’s lower accessibility to care is associated with health inequity perpetuated by systemic
structural violence and jurisdictional issues with resource allocation in rural and remote locations
(King et al., 2009). As noted in the introduction, renewal of primary care with the value-added
component of nurse practitioner practice is a documented means to improve accessibility of

vulnerable populations to primary palliative care.

Nurse practitioner palliative care

Nurse practitioners are experienced registered nurses who have undergone master level
nursing education to practice from a collaborative, patient centered, holistic approach to
autonomously diagnose medical conditions, order, and interpret diagnostic tests, prescribe
medications, perform advanced clinical procedures, and manage episodic and chronic medical

conditions (Canadian Nurses Association [CNA], 2016). It is this emphasis on a holistic

approach to the health and wellbeing of individuals, families, and communities combined with a
critical social justice perspective that makes nurse practitioners particularly well suited to
providing care to Indigenous populations (Browne et al., 2009; Prodan-Bhalla et al., 2016).
There is little scholarship on nurse practitioner palliative care practice outside of specialty

palliative care settings (Collins & Small 2019). In specialty palliative care settings Williams and
Sidani (2001) found that nurse practitioner practice reflects a “holistic, family-centered approach
to care, with an emphasis on understanding the patients’ physical, psychosocial, and educational

needs, on empowering the patient through education and involvement in self care, and on

28

promoting health” (Williams & Sidani, 2001).

In specialty care settings nurse practitioners perform various role functions including
managing medical conditions, symptom management to include psychosocial, physical, and

existential suffering, goal of care and advanced planning discussions, collaboration and
consulting with other care providers, clarification of prognosis and treatment options, providing

education to patients and their families, providing caregiver support, diagnose and manage
treatment related conditions, coordinate patient services, providing ongoing continuity of care,

advocate for patients, and the provision of end of life and bereavement care (Collins & Small,
2019; Lewis, 2020; Shea, Grossman, & Lange, 2010; Tyree, Long & Greenberg, 2005; Williams

& Sidani, 2001).

In primary care nurse practitioners provide early decision making, symptom
management, and supportive care for individuals with chronic, life limiting conditions associated

with symptom burden and functional decline (Cleary, 2016). Wheeler (2016) a nurse practitioner
in Falls Church VA asserts that nurse practitioners have the opportunity to relieve suffering in

primary practice and other settings. Furthermore, she asserts that primary palliative care is more
than just symptom management but extends into goals of care and advance planning discussions
(Wheeler, 20 1 6). She also states that symptom management goes beyond physical distress and

into the dimensions of spiritual and emotional distress. This position is like Prodan-Bhalla
assertion that the missing pieces of the medical model approach is in the relational emotional and

spiritual factors of care.
Thus, this integration of palliative care services into primary healthcare practice is

predicated upon the conceptual shift of palliative care into a complementary addition to curative
care (Cleary, 2016). Nurse practitioner integration of chronic disease management and palliative

29

care in primary healthcare improves quality of life and decreases emotional and economic
impacts at EOL (Cleary, 2016). Ferrell, et al., (2017) in an “American Society of Clinical
Oncology Clinical Practice Guideline Update” states that palliative care services have a
responsibility to patients in ensuring they have a clear understanding of their life-limiting
condition, ongoing clarification of prognosis and treatment goals, ongoing amelioration of

physical and existential symptoms, ongoing assistance in decision making, and ongoing clarity in
understanding patients wishes and preferences for care.

Evidence suggests that nurse practitioner programs have little palliative care content and
little development of palliative knowledge and practice skill (Shea et al., 2010). Tyree et al.,
(2005) used a nonexperimental descriptive design to examine the beliefs, practices, and

perceptions of nurse practitioners initiating EOL conversations (N=607) and found half of their
sample was comfortable initiating EOL conversations, and the majority believed that further
education would enhance their ability to communicate with patients and their families
concerning EOL care. Thus, there is still work to be done in the integration of nurse practitioner
PHC and palliative care service provision. I will now provide an overview of international and

domestic provision of palliative care to Indigenous populations.
Overview of Indigenous palliative care

There is little scholarship on Indigenous people’s palliative care for Canadian populations
and how these services reflect the worldviews and values of those impacted. To provide context
to this work a brief overview of the extant literature of Indigenous palliative care reviews in the

developed countries of Canada, the United States of America (US), Australia and New Zealand,
with emphasis on the US and Canadian situation is provided. The Canadian Indigenous

population and the US American Indian and Alaska Native populations share a common yet

30

distinct history of colonization and in some cases share kinship relations.
Shahid et aL, (2018) in a scoping review of developed countries with similar colonial

histories including Canada, United States, Australia, and New Zealand (N=39) identified needs,

preferences and barriers of Indigenous populations related to end of life care. Identified needs
included: the need for meaningful engagement and collaboration with communities before design
and implementation of palliative care programs; the need for service delivery improvements in
communication, policy commitment, provider capacity building, better physical environment,

and better access to services; the need for greater Indigenous community and care provider
education and training; and the need for care provider commitment and relation building to gain
the confidence of Indigenous peoples (Shahid et aL, 2018).
Caxaj et al., (2018) performed a scoping review on the same developed nations as Shahid et

aL, (2018) looking at the priorities and challenges for a palliative approach to care in rural
Indigenous populations (N=48). Challenges identified included environmental and contextual
issues, institutional barriers, and interpersonal dynamics between client/provider interactions

(Caxaj et aL, 2018). Priorities identified included: the importance of family connections

throughout the dying process, building local capacity for more relevant and culturally

appropriate palliative care, and the importance of flexibility and multi-sectorial partnerships to
address the complexity of day to day needs for patients and families (Caxaj et aL, 2018).
Schill & Caxaj, (2019) investigated culturally safe strategies for rural Indigenous palliative

care in a scoping review of developed nations (N=22). Thematic analysis results and sub themes
include symbolic or small gestures that signal a willingness to accommodate or welcome
Indigenous palliative care patients, anticipating barriers to care, deferral to client, family and
community for culturally appropriate protocols, ceremonies and rituals, shared decision making

31

with client and family, active patient and family involvement in service planning, reorientation

of power to consider the client, family and community equal partners, respectful, clear, and
culturally appropriate communication, community ownership of services, empowering cultural
identity, knowledge, and traditions, valuing Indigenous epistemologies as legitimate sources of
knowledge and expertise during the palliative care process, culturally appropriate and informed
healthcare policy that reflect cultural values, the role of the family in dying and care, inclusion of
Indigenous peoples in governance and decision making structures, and prioritization of funding

for community based palliative care services (Schill & Caxaj, 2019). Importantly, Schill and
Caxaj, (2019) conclude that culturally sensitive and culturally competent care improve palliative
care for Indigenous people, but only culturally safe care is decolonizing in nature.

Fang, Sixsmith, Sinclair & Horst, (2016) in a scoping review of culturally and spiritually
sensitive end of life care for different cultural groups in the United States identified eight themes
(N=49) including the need for culturally and spiritually sensitive palliative care, the impact of

spiritual support on quality of life for terminally ill people, the role of families in EOL decision
making, cultural factors impacting EOL decision making, EOL preferences by ethnicity and
gender, diverse needs of hospitalized patients, cultural competence and providers values
impacting healthcare decision making, and interventions to inform culturally sensitive EOL care.
They defined a cultural group “in terms of their shared stories, beliefs, values, myths and

practices shaped by history and geography” and a spiritual group as “characterized in terms of
religious, spiritual and faith-based beliefs and practices” (Fang et al., 2016, p. 2). Of note this
study identifies the barriers that contribute to the poor-quality experiences of diverse cultural and

spiritual groups and associated low uptake of palliative care services by these groups. Barriers

include cultural differences between healthcare providers and EOL patients, families, and

32

communities, underutilization of culturally sensitive models designed to improve EOLcare,

language barriers, lack of cultural awareness and spiritual diversity, family exclusion in decision
making process, personal racial and religious discrimination, and a lack of culturally and
spiritually sensitive communication (Fang et aL, 2016).
Terpstra, Lehto, & Wyatt, (2021) in a scoping review of American Indians and Alaska

Natives explored spirituality, quality of life, and end of life in this population (N=30). The
identified five thematic spiritual dimensions, the life and death journey, a belief in spirits, tribally
grounded traditions, dominant cultural religious influences, and a family focus. Quality of life
indicators identified included survivorship, optimization of holistic health, communication, and
access to appropriate resources (Terpstra et al., 2021). In the context of EOL, they found death

rituals were an important aspect of care for this population (Terpstra et al., 2021).
Kelly and Minty (2007) in a literature review (N=39) identified common themes in EOL
issues for Aboriginal patients. Themes identified include: respectful interpersonal relationships
with family, community, and culture, the priori in relationships that all people are entitled to

make their own decision free from advising, persuading or instruction which is regarded as
undesirable behaviour, valuing Elders for their participation in decision making and contribution

of wisdom and experience, acceptance of medical advice from physicians out of respect for their
parallel role as that of traditional healers, truth telling and maintenance of hope as family may
have the belief that there is harm in telling their loved one the seriousness of the diagnosis or by
discussing terminal illness or death, that interpreters need cultural as well as language
understanding and the inappropriateness of using family members as interpreters, the importance

of trust in the therapeutic relationship, the preference for immediate and extended family
members to be involved in medical decision making, and the centrality of family and community

33

in end of life decision making (Kelly & Minty, 2007). They also articulate an understanding of
traditional medicine as a set of assumptions based upon the holistic nature of a person, that views
physical and emotional health as being founded upon a balance between mind, body, spirit, and

interpersonal relationships (Kelly & Minty, 2007). Therefore, practitioners who focus on
physical problems to the exclusion of the other dimensions of an Aboriginal person may not be
as successful compared to healing practices that utilize Elder participation, traditional healers,

healing circles, or other incorporated forms of spiritual care (Kelly & Minty, 2007). Garro (as

cited by Kelly & Minty, 2007) acknowledges an Anishinaabe perspective that differentiates
between the afflictions known as Anishinaabe sickness which is attributed to bad behavior or bad
medicine and white man ’s sickness which is attributed to more recent medical conditions that
have developed since exposure to Europeans. Thus, demonstrating a parallel health belief system

for traditional medicine and western medicine (Kelly & Minty, 2007). Treatment distinctions are

that ‘Anishinaabe sickness’ can only be cured by traditional means while ‘white man’s sickness’

can be cured by physician led medical interventions (Kelly & Minty, 2007, p. 1462). It was also
noted by Kelly and Minty (2007) that not all Aboriginal patients want traditional healing and

some from a Christian tradition may take offence.
Summary of noted discrepancies in the delivery of palliative care between Indigenous and
non-Indigenous populations, in developed nations, include lack of capacity in existing services,
lack of homecare services for palliative and chronic illness support, the relocation of Elders to a
higher centre of care away from their families, communities and traditional territories, and a lack

of community-based models that incorporate the unique cultural values, traditions and languages
of Indigenous peoples. These are specific needs related to EOL care, these are also grounded in
the context of health inequities and social determinants of health.

34

Integration of palliative care into primary healthcare

The common life-limiting conditions of diabetes mellitus, hypertension, dyslipidemia,
and heart disease require ongoing care and management to mitigate symptom burden and
functional loss over time (Cleary, 2016). The increased prevalence of chronic life limiting
conditions requires ongoing primary care chronic disease medical management within the
context of an inevitable care transition due to increasing symptom burden and decreasing quality

of life associated with the disease progression (Cleary, 2016).
The integration of primary care and palliative care requires an interdisciplinary team

approach with primary care provider (PCP) providing ongoing coordination, consultation, and

collaboration with other practitioners, care teams, and health systems to integrated service
delivery (Bishop et al. 2021; Cleary, 2016; Ferrell et al. 2017). Integration is desirable at time of
new life limiting diagnosis, but due to low symptom burden at time of diagnosis and

preoccupation with disease management, it is often not realized (Hawley 2017). Family nurse
practitioners in community settings are situated within the healthcare system to provide this
transitional care from a primary focus on disease management to interventions that seek the best
quality of life for the palliative patient (Hawley 2017). Nurse practitioners have the competencies
to evaluate and diagnose medical conditions, order, and interpret diagnostic tests, prescribe
medications, order treatments, perform clinical procedures, and consult and collaborate with

other members of the interdisciplinary team (Collins & Small 2019). More importantly nurse

practitioners practice with an emphasis on inter-professional collaboration and holistic patient¬
centered nursing care; therefore, they are professionally well suited to the greater need for
relational practice approaches and the provision of coordination, consultation, and collaboration
needed in palliative care delivery (CNA, 2016; Collins & Small 2019).

35

The integration of palliative care at time of new diagnosis beginning with an early disease
course discussion is challenging in patients with low symptom burden and preoccupation of

disease control (Cleary, 2016). Cleary (2016), DuBois and Reed (2014), and Wheeler, (2016) all
recommend an incremental approach with knowing when to integrate palliative care in chronic
disease management as the first step. Initial efforts are aimed at providing psychosocial support
and education in the chronicity and incurable feature of the disease (Cleary, 2016). Early
discussion and palliative introduction are necessary prior to palliative intervention allowing for

adequate time for adjustment and accommodation (Cleary, 2016). Assessment tools and
indicators may be appropriate tools for the early identification of patients that may benefit from
the introduction of palliative care including the “Karnofsky Performance Status score” from the

US (available in MD+calc), and the “Gold Standards Framework model” from the United
Kingdom (Cleary, 2016).

After the initial identification and introduction of palliative care, advance care planning
and medical decision-making conversations are initiated and include medical orders for life

sustaining treatment [MOST] (Cleary, 2016). MOST order sets include intervention options on a
scale from more invasive to less invasive and cover preferences on care settings (Cleary, 2016).
Transition of care occurs with a greater focus upon quality of life through symptom
management, medication review and deprescribing, selective diagnostic testing, and selective

ongoing medical follow up (Cleary, 2016). Further opportunities for patient and family
engagement in care goals occurs with hospitalizations and acute exacerbations along with

opportune moments within regular care (Cleary, 2016).

Research has demonstrated discordant correlation between patients perceived health

status and actual health status perhaps due to functional adaptation to declining quality of life

36

(Cleary, 2016). Education and counselling are proposed as the means to alleviate this

discordance along with benefit versus risk discussions with each proposed palliative intervention
(Cleary, 2016). The natural course of chronic, non-cancer conditions is an up and down
progression of exacerbations alternating with symptom or functional improvement followed by
progressive decline over time. This illness course may not be immediately apparent to the patient
or family and thus challenge practitioners’ ability to initiate early palliative care discussions

(Cleary, 2016). Stigma may be associated with an early palliative care discussion due to the

prevalent association of palliative care with terminal cancer patients and loss of hope (Lewis,
2020). Some patients and providers perceive death as the worst possible outcome of illness and

may lead to a desire for heroic effort to receive every drug and treatment available to prolong

life (Shea et al., 2010).
Owens et al., (2012) studied the integration of specialty palliative care services with

primary care through a pilot study in the United States. Performed with a sample (N=49) of
predominately males (average 62 years of age) with a primary diagnosis of cancer who receiving
their primary and palliative care in a nurse practitioner directed clinic. Nurse Practitioners
assumed the role of primary care providers for palliative patients’ referral from other agencies
(Owens et aL, 2012). Nurse practitioners were responsible for the palliative symptom

management of pain, fatigue, nausea, depression, anxiety drowsiness, appetite, and dyspnea
(Owens et aL, 2012). The author concludes that a nurse practitioner directed outpatient Primary

Palliative Care Clinic decreased palliative patient utilization of emergency departments, and

improved symptom management. Owens et al’s (2012) study is significant in that it is a bridging
of the specialty palliative care nurse practitioner role into a primary care setting and integration
of the two services.

37

Aging of the Indigenous population and increasing longevity are associated with a greater

chronic disease burden and functional decline over time (Rocker et al., 2016). When these are
combined with adverse SDOH they drive the need for increased access to PHC and palliative
care services (Kelly & Minty, 2007; Turpel-Lafond, 2020). The specific needs related to EOL
care are grounded within the context of health inequities. Nurse practitioners’ relational inquiry

approach and focus on holistic and patient centred care that attends to the emotional and spiritual
aspect of EOL care are a documented means of improving accessibility for vulnerable and

marginalized populations (Browne & Tarlier, 2008; Prodan-Bhalla et al., 2016; Wheeler, 2016).

In the next chapter I will describe the methods employed in this review to bring into the light the
implicit features of worldview and the approach to analysis, to better view the impact
worldviews have upon palliative care delivery to Indigenous populations in Canada.

38

CHAPTER TWO
Method

This work is informed by the integrative review methodology as delineated by
Whittemore and Knafl’s (2005) adaptation of Cooper’s (1998), five phases: 1) problem
formulation, 2) literature search , 3) data evaluation, 4) data analysis, and 5) presentation. The

problem formulation stage is concerned with identifying the problem that the review is
addressing and to delineate the purpose of the review (Whittemore & Knafl, 2005). The literature

search phase is concerned with including all the relevant literature on the problem to find the
greatest number of eligible primary studies (Whittemore & Knafl, 2005). The data evaluation
stage is concerned with evaluating the quality of the primary sources depending upon the sample

frame and the use of quality criteria instrument (Whittemore & Knafl, 2005). The data analysis
stage is concerned with a complete and unbiased interpretation of the primary studies and a novel

synthesis of the evidence executed through a systematic analytic method (Whittemore & Knafl,
2005). The presentation stage is concerned with the display of a “logical chain of evidence” to

relate primary source evidence to review conclusions with the ultimate goal being to “contribute
to a new understand of the phenomenon of concern” (Whittemore & Knafl, 2005, p. 552).

This integrative review’s overall perspective is guided by constructivism, or the belief in

multiple realities constructed within the context of time and place (Gray et aL, 2017).

Constructivism is an important theoretical consideration in this review that contrasts with the one
objective reality of empirical medical practice. Thus, creating space to consider other views on
reality and their impact on Indigenous palliative care and nurse practitioner primary palliative
care delivery. The review is grounded in the concept of critical social justice to examine the

sociopolitical, economic, and historic power dynamics underlying Indigenous health inequity,

39

and an exploration of the social pathways influencing individuals and families that sustain these
health inequities (Browne & Tarlier, 2008; Tarlier & Browne, 201 1). Analysis methods used in

qualitative research are used to assist in the analysis of the literature (detailed in Appendix One
Primary Source Data Matrix), providing an in-depth focus on the unexplored phenomenon of
Indigenous people’s worldviews and perspectives within palliative care. This approach is used to

explore the voiced perspectives of Indigenous people, their families, communities and health
care providers in the usage and delivery of palliative care in Canada.

Literature search stage

Whittemore and Knafl (2005) articulate that an explicit, well-defined search strategy is

required to find all relevant primary literature on a topic to enhance the rigour and accuracy of
the research results. This strategy must enable a comprehensive search of the extant literature to
identify the “maximum number of eligible primary sources” published to date (Whittemore &
Knafl, 2005, p. 548). I have used a three-pronged search strategy 1) explicit database protocol
search; 2) ancestral search pattern from the reference list of papers found; 3) knowledge of

sources from previous searches (Greenhalgh & Peacock’s, 2005). My rationale for this strategy
is to find relevant published literature on Indigenous worldviews or perceptions of death, dying,
EOL care, and palliative care pertinent to the research question.

The databases Academic Search complete (EBSCO) CINAHL (EBSCO), APA
PsycArticles (EBSCO), Medline (EBSCO), and PubMed Central were searched for all articles
through April 2021. The protocol-based process consists of three searches of each database (VI,
V2, V3) with keyword and key-term search joined by Boolean connectors to form string sets,

diagramed in Table One. Database subject headings required specific adjustment to nearest
meaning or allied topic depending upon database. The ancestral search pattern is employed in

40

searching the references of references to discover distal sources from articles meeting inclusion

criteria (Greenhalgh & Peacock, 2005). Finally, relevant sources identified through personal
knowledge, peer networking, or incidental discovery will also be considered for inclusion
(Greenhalgh & Peacock, 2005).

Inclusion criteria are studies containing an Indigenous population, in a Canadian
geographical context, palliative care topic and worldview or perception on palliative care, and/or

other surrogate terms in the subject line, title, abstract or all text. Perception on palliative care as
delineated by dialogue from participants was an important inclusion criterion. Studies lacking in
these primary components are excluded in addition to studies judged to be not in alignment with
the research question (detailed on a case-by-case basis). Other search parameters are peer
reviewed academic journals, English language only and no date limitations, all to provide the
greatest depth of primary source articles. Abstracts and discussion or opinion pieces are excluded

by either search parameter or hand inspection of articles to concentrate on published primary
studies.
Articles were examined by the writer for inclusion and exclusion criteria and displayed in
table two. In total forty articles met initial inclusion criteria and were further evaluated for full
text inclusion and exclusion criteria with seven articles meeting the criteria for inclusion

displayed in Table Two. No previous integrative review on worldviews and Indigenous people’s

palliative care was encountered as a singular entity. A three-pronged stratagem consisting of a
defined search protocol, the use of snowball search technique, and application of personal
knowledge and social networks was utilized to find seven articles included in this review.
Limitations include no articles were encountered concerning Metis palliative care and no articles

encountered exclusively on worldview and palliative care or EOL care.

41

As highlighted by Whittemore and Knafl, (2005) a meaningful appraisal of the methods

of incorporated quantitative, qualitative, and mixed method primary studies needs to be included

in an integrative review. In this review the Critical Appraisal Skills Program (CASP)
questionnaire (qualitative checklist), is utilized to evaluate the quality of the selected sample of
empirical sources (Bartlett et al., 2018; Brice, 2018; Langendam, Kuijpers, de Beer, and Kremer,
2010). Data matrix tables are a means to facilitate data analysis through reduction, display and

comparison and are used to provide an overview of the context of the seven primary sources in
Appendix One, Primary Source Data Matrix. Data matrix fields detail author(s), year, study
purpose, design, sample, location, CASP appraisal, thematic findings, and recommendations.

Data analysis stage
Data from the primary sources consisted of researcher, patient, family, community, and

HCP statements were extracted from the results/fmding sections of the primary source and
compiled into a list as detailed in Appendix Two Theme Data Matrix. Statements were reduced
to single concept and one or more ideas. A constant comparison method was utilized to compare

it line for line and organize it into similar concepts/ideas. Clusters of like statements were

categorized into themes in an iterative and summative manner to view patterns and relationships
in the data. Hiebert’s Worldview Model (as cited by Sharma, 2007) provides a scaffold to

categorize dialogue into the cognition, affective, and evaluative dimensions of culture as detailed
in Figure One, A Model of a Worldview. Theme and worldview features analyses are detailed in

Chapter three findings in order to map the relationships between the integrative review findings
and worldview model features; thereby, making visible worldview impacts on Indigenous

palliative care delivery.

42

Table 2. Flow diagram of search strategy and article selection

Identifcao
Screnig
Eligblity

Include
From: Moher D, Liberati A, Tetzlaff J, Altman DG, The PRISMA Group (2009). Preferred Reporting /terns for Systematic Reviews and Afeta-^nalyses: The PRISMA
Statement. PLoS Med 6(7): e!000097. doi: 1 0. 1 371/1000097

For more information, visit www.prisma-statement.org.

43

Sample dialogue is categorized according to Hiebert’s Worldview Model into nine worldview
features of culture diagramed in Figure One.
Figure 1: Worldview Cognitive, Affective, and Evaluative Features

Cognitive Dimension
Time
Self-concept
Space

The cognitive domain of culture is represented by cultural conceptualization of time, self¬

concept, and space (Shanna, 2007). The affective dimension of culture is represented by cultural

conceptualization of feeling, preference, sense perception and food (Sharma, 2007). The
evaluative dimension of culture is represented by cultural conceptualization beliefs, emotion, and

44

ethics, values, and judgements in accordance with Hiebert’s Worldview Model (Sharma, 2007).

Model of a worldview. Our worldview is the distinct lens through which we see and

perceive reality (Sharma, 2012). Perception is our sensory experience of reality and is our
cognitive, affective, and evaluative judgement of the experience from our own conceptual

standpoint (Sharma, 2012). People believe that the world they see is the same as they see it
(Sharma, 2012). No two people in the same situation experience it in the same way, and thus

have different perceptions of their experience, which ultimately relates to their worldview.
Sharma (2012) conceptualizes social institutions as being socially constructed through reciprocal

habitualized activities where a group member, follows group rules, and performs shared habitual
actions, that creates a social institution. Furthermore, Sharma (2012), argues that social reality is

constructed through the process of interaction and understanding with others because of an

“enterprise of persons in a relationship” construed from a historical and cultural foundation
(Sharma, 2012, p. 88). This social reality is construed through

“The process of construction, there would be interaction between and among two or more
persons, there would be an object or event we engage with, there would be persons or
ideas that inform us, there would be power over and power resistance,” (Sharma, 2012, p.
88).
Thus, the cultural encounter constructs social reality and is predicated upon relationships,

“assumptions about reality, and a voice or an action and reaction or response on one’s voice or
action” (Sharma, 2012, p. 88). Sharma (2012) theorizes that the concepts of us and them or other

are determined based on a person’s worldview where “similar worldviews indicate nearer to us
than them” (pg. 88).

The anthropologist Paul Hiebert (1985) has proposed a worldview model that tries to

explain the theory and configuration underlying the concept of culture (as cited by Sharma,
2012). Culture is defined as a “system of meanings about the nature of experience that are shared

45

by a people” and are transmitted from one generation to another (Robbins et al., 2017, p. 9-10);

and by Hiebert as an “ascribed system of beliefs, values, norms, and behaviours” (Sharma, 2012,
p. 83). Hiebert (1985) (as cited by Sharma 2012), groups the basic assumptions of reality into

three dimensions of culture: the cognitive, affective, and evaluative dimensions. In Hiebert’s
model culture has different levels or depths from surface to core.

In this description surface refers to that which is visible like cultural products, behaviour
patterns, rituals, signs, et cetra, while below the surface refers to beliefs, myths, rituals, dramas,

and songs, and at the core lie implicit and unseen structures like worldview, categories, and
cognitive patterns of thought (Sharma, 2012, p. 89). The concept of a worldview has many
definitions depending upon contextual usage from philosophical, historical, and anthropological
domains (Sharma, 2012). This integrative review is concerned with the anthropological

conceptualization of a worldview as a set of assumptions and presuppositions through which one
can view the world (Sharma, 2012, p. 82).

The cognitive dimension of culture. In Hiebert’s Worldview Model the cognitive

dimension refers to the shared knowledge of the cultural group (Sharma, 2012). Cultural
knowledge contains the assumptions and beliefs that are used to perceive the world and
understand reality (Shanna, 2012). Cultural cognitive assumptions are concerned with the

conceptualization of time, self-concept, and space (Sharma, 2012). The cognitive dimension of
reality also refers to our existential assumptions that are reflected in a cultural cognitive pattern

or epistemology (Sharma, 2012). This refers to the conceptual content of a culture (knowledge)
or way of knowing (epistemology) of a community, group, and society (Sharma, 2012). Shared
knowledge provides the cognitive patterns and existential assumptions and beliefs that people
use to explain reality (Sharma, 2012). Epistemology is concerned with how people explain

46

reality based upon their perceptions of this reality (Sharma, 2012). This explanation of reality is

based upon individual perception which is also a process of selection, codification, and

interpretation (Sharma, 2012). Cognitive assumptions are also concerned with the
conceptualization of time. For instance, in a western mechanistic worldview time has a start and
end and can be divided into even aliquots; foundationally situated on the assumptions of
progress, evolution, and the future (Sharma, 2012). Other worldviews emphasize time as cyclical

in a never-ending cycle of repeating birth, death, and rebirth (Sharma, 2012). The cognitive
domain is also concerned with the assumption of self-concept and the conceptualization of space
within a culture (Sharma, 2012). Perception of self or self-concept is framed within the culture or

“ to pose themselves within the culture” (Sharma, 2012, p. 85). In a western worldview self is the
“core of individual identity” (Sharma, 2012, p. 85). Space can be sacred or impure and “good

fortune or misfortune” (Sharma, 2012, p. 85). In the western worldview there is the belief that

happiness is achievable through planning and hard work (Sharma, 2012).
The affective dimension of culture. Hiebert’s affective dimension of reality is concerned
with cultural assumptions on expressed feeling, preference, sensation perception and food
(Sharma, 2012). Demonstrated in a person’s state of mental and psychological disposition

associated with feelings, thoughts, and behaviors (Sharma, 2012). Affective assumptions are
concerned with cultural attitudes, conceptualization of beauty, like, dislike, joy, sorrow, pain et
cetra (Shanna, 2012). Feeling, preference, sensation perception and food comprise affective

assumptions on the perceptions of like, dislike, attitudes, ideas of beauty, joy, sorrow, pain,
smell, taste, and others (Sharma, 2012). Cultural manifestations are in clothing fashion, beauty

standards, food, furniture, furnishings, and houses (Sharma, 2012). Assumptions on emotional

expression underly social behaviour and relationships and can be aggressive and argumentative

47

in one culture versus self-controlled and tolerant in another (Sharma, 2012). Perceptions of
smell, taste and look are different between all peoples and are interpreted from the affective

assumptions of their culture (Sharma, 2012).
The evaluative dimension of culture. Hiebert’s evaluative dimension of culture is

concerned with the evaluation of cognitive beliefs, judgement of the emotional expression of

people, and the moral determination of right and wrong (Sharma, 2012). Evaluative assumptions
provide guidelines for people to judge truth and error, right and wrong, like and dislike, moral
and immoral, gentle, and rough, cultured, and uncultured, wise, and foolish, fair, and ugly, et
cetra (Sharma, 2012). Each distinct culture has one main value which is divided into three types:

evaluation of cognitive beliefs, evaluation of emotional expression, and the evaluation of ethics
(Sharma, 2012). The evaluation of cognitive beliefs is how we determine whether something is
true or false or right or wrong; while evaluation of human emotional expression determines our

perceptions of what is beautiful or ugly and whom we should love or hate (Sharma, 2012).
Emotional expression is communicated in voice tone, facial expression, and gestures (Shanna,
2012). Finally, evaluation of ethics underpins our judgement, values, and detenninations of

moral and immoral (Shanna, 2012). Each culture has its own ethical code and defines some acts

as righteous while others are unethical or immoral (Shanna, 2012). These evaluative assumptions
shape our desires and dislikes, what we hold to be moral behaviour and are manifestations of our
culture’s priorities (Shanna, 2012). Evaluative assumptions construct our social reality through
interactions with others and produce socially constructed knowledge through the “subjectively
meaningful conduct of peoples lives” manifest in social beliefs, shared values, and social norms
(Shanna, 2012, p. 87).

48

The Theory of Tsawalk. Richard Atleo (2004) in “Tsawalk: A Nuu-chah-nulth
Worldview” writes on an Indigenous philosophy, Heshook-ish tsawalk a Nuu-chah-nulth

perspective on reality that the physical and metaphysical world is one. The theory of Tsawalk or
everything is one is based upon traditional assumptions found in Nuu-chah-nulth origin stories

and these provide an alternative interpretation on the nature of existence than those of western
evolution-based origin stories (Atleo, 2004). Atleo questions the western assumption that
knowledge acquisition can only be acquired through scientific reason and the worldview

perspective that assumes experience is only empirical in nature and that all other experiences are
secondary (Atleo, 2004). From a traditional Nuu-chah-nulth worldview, the theory of Tsa-walk
assumes a “spiritual primacy to existence” where the physical world is perceived as a reflection

of the creator (Atleo, 2004, p. xvi). Atleo’s (2004) theory of Tsa-walk will be used to highlight
some aspects of worldview differences. The theory of Tsawalk provides “an orientation to life

and reality” before colonialism and though it is specific to the Nuu-chah-nulth worldview and
cannot be generalized to all Indigenous people’s worldviews; however, it provides an explicit

view to contrast western perspectives to illuminate the differences and similarities.
In the next chapter I will provide my analyses of this reviews integrative theme findings
and feature findings to view the impact of worldviews on Indigenous palliative care delivery as
documented from the seven primary sources.

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CHAPTER THREE

Findings

The Seven primary source studies grouped their results and findings into themes with
supporting statements and dialogue from study participants which this review organized into

themes by concept and idea similarity through line for line comparison into Inuit, First Nation
and Metis cultural group perspectives. This integrative review is focused upon the presentation

of these theme findings and associated feature findings to understand the affect worldviews have
upon palliative care delivery to the Indigenous populations reflected in the seven primary
sources. The review findings are categorized into themes, using a constant comparison method to

compare researcher statements line by line from the result/finding sections of the primary source

and categorize into 1) traditional and contemporary EOL experiences, 2) EOL beliefs, 3) EOL

preferences 4) EOL communication, 5) EOL capacity, 6) EOL resource and policy limitations,
and 8) recommendations for palliative care improvement, diagramed in Figure 2, Theme
Findings. The detailed statements making up the foundational data of the themes are diagramed
in Appendix two Primary Theme Data Matrix. No primary study on palliative care exclusive for

Metis people was encountered and no Indigenous participant identified as being Metis; however,
in Saskatchewan a participant speaks of First Nation and Metis people “We ask you to listen to

the following First Nations and Metis men and women to help you develop further insights into
the meaning of dying” (Hampton et al., 2010, p. 9). Therefore, these two cultural groups are

presented together and are unable to be separated. The term Aboriginal is used by all seven
primary sources and these review findings use the term Aboriginal when referring to primary
source to follow the same naming convention.

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Figure 2. Theme Findings

51

Hiebert’s worldview model, referred to as the worldview model is used to frame dialogue

examples from patient, family, community, and HCPs into the cognitive, affective, and
evaluative dimensions of culture (Figure 2), to make visible features of a worldview. Cognitive
dimension features include the cultural conceptualization of time, self-concept, and space.
Affective dimension features explore the cultural conceptualization of feelings, preferences,
sensory perception, and cultural importance of food. Evaluative dimension features explore

cultural cognitive beliefs, emotional judgement, and cultural ethics and values, and judgement on
right and wrong. This scaffolding of dialogue within the worldview model helps to make visible
some assumptions on worldviews between groups. This model provides a means to view the

features of a worldview to support thematic findings. The model features are inserted within the
thematic findings where appropriate. Following this section is the discussion on the key findings
and worldview model features and their impacts upon the delivery of palliative care to
Indigenous people in Canada.
Traditional and contemporary EOL experience
Inuit traditional EOL experience. Inuit family and community participants, in Inuvik,

voice an oral history of caregiving traditions where the sick and elderly were collectively cared

for by family and extended family (clans) who shared social responsibilities (Hordyk,
Macdonald, & Brassard, 2017). When clan size and clan wellbeing permitted, nomadic

caregivers would temporarily settle in location and provide care to the sick and dying (Hordyk et
al., 2017). During the final stage of dying, family and friends gather, both adults and children,

and may engage in song, conversation, silence, games, prayer, storytelling, laughter, sharing of
food, and assistance with the activities of daily living (Hordyk et al., 2017). The continuity of

traditional Inuit health care practices was impacted by disease epidemics decimating clans,

52

federal government policies of forced settlement into sedentary villages, forced displacement to

hospitals in the south (often without repatriation), and forced attendance at residential schools;
consequently, disrupting the intergenerational transfer of traditional cultural knowledge and

creation of intergenerational trauma from these colonial practices (Hordyk et al., 2017). Many
Inuit people now live with the memory of these experiences and the traumatic disruption of their
traditional lives (Hordyk et al., 2017).
Inuit contemporary EOL experience. Community informants in Nunavik state that “pre-

Christian grief and burial traditions” were once practiced, but European missionary influences
have influenced these practices and participants state that they are “no longer present in
communities” (Hordyk et al., 2017, p. 650). Inuit-trained Anglican pastors are now present in
most communities, and they perform funeral services in the European missionary tradition with

hymns, prayers, and scriptures (Hordyk et aL, 2017). HCPs and community members in Nunavik
acknowledge the decline of traditional practice of family members caring for their dying relative
at home, in the home community (Hordyk et aL, 2017). These contemporary changes to

traditional EOL practices are attributed to five main factors: exceeding the capacity of some
families to provide care, social media and television usage decreases informal social contact and
reduces collective social adhesion, interruption of intergenerational knowledge transmission and
the loss of how to support or prepare for the dying process, intergenerational trauma from
colonial practices triggered by witnessing the dying process, and employment with fixed hours
and travel commitments interfering with family member reorganization to provide care (Hordyk
et aL, 2017). Thus, for some Inuit people the location of care has progressively transitioned from

home settings to institutional settings and from family caregivers to HCPs (Hordyk et aL, 2017).

HCPs and community informants in Nunavik express concern with this transition of care and that

53

for some families the unseen impacts of colonialism that “reside in the collective memories of
families” may be aggravated by residual colonial practices in health service delivery (Hordyk et
al., 2017, p. 651).

First Nation and Metis traditional EOL experience. Community informants in

Saskatchewan describe a time when the whole community came together to support the dying
person and their family (Hampton et al., 2010). The family would prepare themselves and their

dying family member for the journey to the spirit world (Hampton et aL, 2010). Community

participants state that each First Nation has its own specific protocol or practices to be observed
at the passing of one of their members, and this knowledge is considered sacred and is passed

down through the generations (Hampton et al., 2010). Traditional protocols could include the
singing of a farewell song and prescribe ritual practices like feasting and fire keeping (Hampton
et aL, 2010). Researchers in Hampton et al’s (2010) study states that the language used by their

community informants in Saskatchewan reflect “their Christian believe system”, but they note
that informants are also traditional knowledge keepers who practice the “traditional protocols of

their First Nation” (Hampton et aL, 2010, p. 9).
First Nation contemporary EOL experience. Community members in Northern

Manitoba reported that most elderly patients prefer to die at home, but they acknowledge that
medical care is better in the city; however, they state that some younger patients may not accept

palliative care as an option (Hotson et aL, 2004). Family member participants in Northern
Ontario report that some dying First Nation people prefer to die in hospital while others prefer to

die at home (Kelly et aL, 2009). Community participants acknowledge in Saskatchewan and
Northern Manitoba that everyone has unique needs in dying and differences should be respected
(Hampton et aL, 2010; Hotson et aL, 2004).

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Cultural EOL beliefs

Findings for Indigenous EOL beliefs include identity to cultural group, land, and culture,
western and traditional spiritual beliefs and practices, cultural values, and the importance of

traditional food and medicine.
Inuit cultural EOL beliefs. Findings for Inuit cultural EOL beliefs include a strong
sense of Inuit cultural identity, Inuit spirituality, Inuit cultural values of respect and trust, Inuit
sense of place, and the Inuit cultural importance of traditional food. The studies of Galloway et

al., (2020), Vincent, Rice, Chan, and Grassau, (2019), and Hordyk et al., (2017) make no explicit

reference to participant worldviews in their results. Worldview features displayed in the dialogue
include Inuit conceptualization of time, self-concept, preference, pain perception, beliefs,
emotional display, and ethics.
Inuit beliefs on cultural identity. Cultural characteristics are described by family and

community participants in Nunavut and Nunavik. Family participants described the behaviour of
dying family member during their illness and EOL care. Galloway et al., 2020, Vincent et al.,
2019, and Hordyk et al., (2017) patient, family and HCP participants describe Inuit cultural

findings of independence, stoic suffering, and an ethos of caregiving in EOL.
These findings are exemplified in the following dialogue statements. For stoic suffering
in Nunavut, example 1) “Some Elders believe that this is a private experience and sometimes
symptoms they just are to be suffered through, and sometimes people are reluctant to ask for help
with symptom management,” participant 13, (Vincent et aL, 2019, p. e 1 66). For the characteristic

of independence in Nunavik, example 2) “There is a belief that you have to take care of your
family. What is in the home stays home and shouldn’t really be going out. So even though they
[family members] are ‘burning out,’ they don’t reach out for help,” family member, (Hordyk et

55

al., 2017, p. 650). For the characteristic of independence in Nunavut, example 3) “and then two
years later my mom got sick. And, of course, she didn’t tell us either. It’s just the way Inuit

people are. You don’t bring your problems to somebody else to burden them with,” participant
ten, (Galloway et al., 2020, p. 7). In example 4) “... just you know we scrunch our noses to say

‘no’ or we raise our eyebrows to say other things, like we need more,” participant six, (Galloway
et aL, 2020, p. 9). In this example a family participant explained that Inuit non-verbal

communications and local gestures might not be appropriately interpreted by HCPs who were
not familiar with the culture. These statements reveal how the Inuit participants view aspects of

their cultural identity through some inherent Inuit characteristics. Inuit explicit preferences
indicate a positive regard for identity to the Inuit cultural group, orientation to family, and a

preference for the other to be connected to the group.
Inuit worldview features. When these dialogue examples are framed within the

worldview model self-concept, preference, perception of pain and emotional display are focused

upon. In the first statement from Vincent et al’s 2019 study participant thirteen voices a cultural

belief that illness is a private family matter and should not be outside the family or by extension
outside the group, and thus emphasises the cultural concept of us versus them. Furthermore, the
statement indicates that pain should be suffered through and by extension not displayed to

others. This statement also has an inner cultural orientation to family, community, and Inuit
culture. The second example from Hordyk et al’s 2017 study amplifies this idea of us and other
and acknowledges the stress this imposes upon EOL care, in that families feel “burnt out” or

emotionally and physically overextended. Again, by extension that independence is a self¬
concept, family obligation to the dying person is ethically right, and limited emotional public

display are Inuit cultural features. In the third statement from Galloway et al’s 2020 study,

56

participant ten voices that her mother didn’t want to burden family, and she relates this to a trait
of independence in Inuit cultural self-concept. In the fourth example also from Galloway et al’s
2020 study, participant six, further emphasizes this cultural orientation, in expressing that those
not from the culture would not understand this insider cultural communication. Thus, Inuit

participants in these dialogue examples reveal cultural orientation to family, community, and
Inuit culture as innate and acknowledge that this causes difficulties with others or those not from
their cultural group.
Inuit beliefs on spirituality. Cultural beliefs on spirituality are described by family and

community participants in Nunavut and Nunavik. Research findings mostly describe Christian

spiritual beliefs around EOL. European missionaries are attributed to influencing beliefs
concerning death and the afterlife, funeral preparation, burial, and “beliefs concerning whether
or not to communicate terminal diagnoses” (Hordyk et al., 2017, p. 650). Importantly Hordyk et

al., (2017) attributes the reluctance of families to have serious illness discussions to underlying

missionary influences, without further elaboration. Spirituality is important to most Inuit patients
and families (Hordyk et al., 2017). In Nunavik a nurse respondent comments on spirituality in
Inuit palliative care, example 1) “the first thing you need to treat is to treat the person spiritually
and mentally instead of with pills,” nurse, (Hordyk et al., 2017, p. 651). Caregiving is recognised

as an important Inuit characteristic (Hordyk et al., 2017). A community participant in Nunavik
describes this Inuit ethic of caregiving with the following, example 2) “The Inuit practice (of
caregiving) is very strong. If you care for that person and the passing of life, your heart is going
to be peaceful. If you don’t care for the person, your heart is going to suffer,” Inuit Elder,

(Hordyk et al., 2017, p. 649). Thus, spirituality in caregiving are important considerations when
working with most Inuit people.

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Inuit worldview features. When these dialogue examples are framed within the model

the following features emerge concerning emotion, and values and judgement. In the first

example from Hordyk et al’s 2017 study, a non-Inuit HCP observes from an etic or outside
perspective on the Inuit culture that spirituality and emotional aspects of care take precedence
over medical management. Thus, indicating that for most Inuit the affective dimension of culture

takes precedence over the cognitive and evaluative dimensions of culture. This is a different
worldview stance than western views that hold the cognitive dimension of culture as being

preeminent (Sharma, 2007). In the second example also from Hordyk et al’s 2017 study, an
insider perspective is presented, with an Elder acknowledges a cultural ethos of caring during

EOL with spiritual overtures that conveys an evaluative judgement on a cultural duty to care.
This statement implies that family and community members have a duty to care to those within
the group, or that the alternative is spiritual and emotional suffering in the caregiver. In these

features from the worldview model, the emotional feature takes precedence over physical or

empiric cultural features. In other words emotional affect is an important cultural feature of an
Inuit worldview. These statements reveal how the Inuit participants and non-Inuit HCPs view

spiritual beliefs and related cultural conceptualization of emotion, values, and ethical judgement
inherent in Inuit culture.
Inuit values of respect and trust. Respect is identified as an important cultural value

(Galloway et al., 2020, Hordyk et al., 2017). Both Galloway et al., (2020) and Hordyk et al.,
(2017) found that the Inuit value respect for their Elders and respect for their culture. Example 1)

“Because we do respect the elders and they are about to journey on to the next life,” participant
three, (Galloway et al., 2020, p. 8). In this example a family member comments on the cultural

value of respect and uses the metaphor of death as a journey. Family informants in Nunavik also

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emphasis the importance of trust in their relationships with HCP’s. Trust that has been built by
progressive interaction of HCPs working with patients and families (Hordyk et al., 2017).
Inuit worldview features. In example one from Galloway et al’s 2020 study, this
statement is concerned with the Inuit conceptualizing of time as being part of a cycle. Inuit

participants speak of time as both a closed linear conceptualization associated with discrete
periods, and time as an open concept in a cycle that never ends. In example one the metaphor of

death as a journey and movement onwards is used to describe the travel between this world and
the spirit world. This characterization of time makes explicit a belief in the concept of time being
cyclic and by extension within the circle of life metaphor. In another supporting example, “and
financially ... that’s a thing, you don’t know how long you’re going to be down there for, and I
ended up having to drop out of school because um I just didn’t know how long she ... I had with
her,’’ participant six, (Galloway et al., 2020, p. 6). Participant six makes reference to western

conceptualization of time as a linear concept with discrete measurable periods characterized by a
beginning and end (Shanna, 2012). In Vincent et aL, (2019), study, non-Inuit HCPs describe
time as a linear, discreetly measurable commodity in alignment with western concepts of

progress, evolution, and the future (Shanna, 2012). Thus, in the primary source findings, time
conceptualization emerges as a feature of some Inuit people’s worldview and the concept of
time, being both linear and cyclical in nature.

Inuit beliefs on a sense of place and on traditional food. Galloway et aL, (2020) and

Hordyk et aL, (2017) note the importance of an Inuit sense of place and value of traditional food

from the land. Some of Galloway et al’s (2020,) participants note that being on the land is very
important to the wellbeing of Nunavut Inuit patients and their family caregivers. Example 1)

I had one of my cousins bring me my ATV and we went up ... I just love the mountains
and everything up there, so I climbed up that mountain halfway and I just sat there for a

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good hour, soaking it all in. The air. The openness. The view. I could see for miles to the
ocean, to the islands. It was up in land from where my grandparents used to camp.
Participant 10 (Galloway et al., 2020, p. 8)

Inuit worldview features. Example one from Galloway et al’s 2020 study, is concerned

with the features of feeling, belief, and values. Family informants in Galloway et al’s (2020)
study express a love for being out on the land and connection to ancestors. The participant uses
an up and down orientation metaphor both as a literal spatial reference up that mountain and as a

spatial connection to ancestors “up in land from where my grandparents used to camp”
(Galloway et al., 2020, p. 8, Lakoff and Johnson 1980). The cognitive belief is in a sense of place
and sense of belonging and connection to home territory, community, and connection with
ancestors. The evaluative cultural value in this example is respect.

First Nation and Metis EOL beliefs. Findings for First Nation and Metis cultural beliefs

include First Nation and Metis cultural identity, expressed worldviews, spirituality, a sense of

place, cultural value of respect, the cultural importance of traditional medicine, food, and healers.
First Nation and Metis cultural identity. Cultural identity characteristics are described

by family and community participants in Saskatchewan and British Columbia. Community

participants in Saskatchewan describe their feelings and sense of duty or obligation to a dying
community member as being an important cultural aspect of care. Example 1,
It evokes special responsibilities and obligations that the living feel they have toward
those who are about to enter the spirit world. We hope this video will give health care
providers some insights into those feelings, and that you will find ways to respect those
traditions. (Hampton et al., 2010, p. 9)
Furthermore, Participants in this study describe feelings and understanding from the heart is

culturally more important than physical aspects of care. Example 2),

Help us to feel. Help us and listen to us as the First Nations people as we talk from our
heart rather than from our minds. And we may talk like simple, uneducated individuals,
but we’re not. We’re very articulate, deeply spiritual, intelligent people. But we don’t talk

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from here we talk from our heart. Especially if there’s a loved one laying there dying.
And we want then to hear that. Elder Art, (Hampton et al., 2010, p. 11)
HCP respondents in Castleden et al’s (2010) study recommended efforts to “(re)connect dying

Aboriginal peoples with their homelands” as this is of great importance to Aboriginal people
(Castleden et al., 2010, p. 489). Example 3),

“A person [who] is getting sick and they know where they’re from. . .but they don’t really
want to go to that place, because they don’t have any connections, they don’t know
anyone. They don’t really want to go there to die, but they’d like a connection. That soil
can be used in ceremony and the medicine of that soil can be taken advantage of,”
(Castleden et al., 2010, p. 489).
This statement makes an observation by an HCP that for some First Nation and Metis people
reconnection to cultural and spiritual sense of identity is important to dying Aboriginal people.

First Nation and Metis worldview features. When these three dialogue examples are
framed within the worldview model different elements of culture concerning self-concept,
feeling, emotion, and ethics come into focus. Statement one from Hampton et al’s 2010 study,

speaks of responsibility, obligation, and feelings. Obligation and responsibility are evaluative
statements on cultural ethics, values, and judgements. In example two is a statement on feeling

and emotion and their cultural importance. This statement prioritizes the affective aspect of
culture as taking precedence over the cognitive or evaluative dimensions of culture. Hampton et
al’s (2010) explicit need “to talk from the heart” is similar Kelly et al’s (2009) findings that
Aboriginal participants want physicians to communicate respectfully with words of
encouragement. In the Castleden et al., (2010) dialogue example the ethnic identity of this HCP

is not stated but appears to be an emic evaluative cultural judgement statement based on the

phrase medicine of that soil This statement medicine of that soil denotes a traditional Indigenous
conceptualization of medicine having spiritual and physical properties (Kelly and Minty 2007).
Importantly for some First Nation and Metis people identity is integral with connection to the

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group, home territory and culture. These findings indicate a greater valuation of feeling during

the EOL process over cognitive and evaluative dimensions of culture and by extension a need for
greater emphasis on psychosocial supports with existential and emotional symptoms.

First Nation and Metis worldview findings. Explicit statements on worldview emerged
from the First Nation and Metis primary source findings for British Columbia and Saskatchewan.
An HCP informant in British Columbia state that differences in how care and dying were

experienced were due to differences in worldviews even though she could not articulate what
these differences in worldviews were (Castleden et al., 2010). In Saskatchewan community
informants expressed their traditional cultural beliefs that spiritual knowledge is present at birth,

that life is a circle, and death is not the end of life but the completion of the circle in this world
(Hampton et al., 2010). In Hampton et al., (2010) and Kelly et al., (2009) studies, Aboriginal

participants describe a cultural preference for palliative care to occur in home communities, and
a need to gather people and “come together as a community” when an Aboriginal person is dying
(Hampton et aL, 2010, p. 9). Community participants in this study explain that in their traditional

worldview extended family and community come to be with the dying person to give them

energy for the journey and to support the bereaved family (Hampton et al., 2010). Participants

express that the family must have an energy release to allow the dying loved one to journey to
the other side (Hampton et al., 2010). Thus, these examples demonstrate a sense of moral
responsibility and moral duty to the dying person, and the need for family and community to
fulfill this obligation. Furthermore, fulfilment of this moral responsibility comes into conflict
with western delivery of palliative care when family members are limited from gathering at the
bedside and practicing traditional First Nation protocols in death and dying (Hampton et al.,
2010; Hotson, MacDonald, & Martin, 2004; Kelly et al., 2009). This perspective differs from the

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western perspective reflected in some health institution policies that a dying person needs to rest,

and visitors need to be limited in duration of time and number of visitors (Hampton et aL, 2010;

Hotson et al., 2004; Kelly et al., 2009). This explicit difference in giving energy versus rest and
quite demonstrates two very distinct worldview assumptions; however, with the western

viewpoint paramount in healthcare, the system is structured in preference to the western view.
Furthermore, experiences of colonialism and forced institutional environments for many

Aboriginal peoples may make hospital and long-term residential care settings a traumatizing

environment to receive care in (Castleden et al., 2010).
These community informants further explained the cultural belief that because
Aboriginal persons accept death as a natural part of life, they will prepare their family for their
loss and ask them to not grieve too hard. Example 1 )
“Like my dad knew he was going to go, my mother also. And he said, “I want all of you
her. It’s not going to be very long now.” My mother said, “in three days. . .1 want to hear,
I want to talk to all of you.” So we knew. He told us,” Elder Richard, (Hampton et al.,
2010, p. 10).
Furthermore, they state that if a dying person is concerned about the welfare of their loved ones

in this world, then they may be held back from going to the next world (Hampton et al., 2010).

Example 2, “If you cry. He said in Cree, you’re going to hold me back, you’re going to hold me
back when I’m going,” Elder Richard, (Hampton et al., 2010, p. 10). The phrase ‘don’t cry’ is
meant to prevent family and community members from spiritually holding back their family

member from taking the journey into the next world (Hampton et al., 2010). Example 3,
“When my dad died, he had us there and my mother and we, he talked to us you know he
talked and he said Don’t cry, don’t cry, ‘he said, ‘I’m going back to where God is,’ And
then that gives you a good feeling. You know don’t cry, I’m going to go to a better
place,” Elder Isabel, (Hampton et aL, 2010, p. 10).

—

First Nation and Metis worldview features. Some First Nation participants expressed

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traditional worldview beliefs that when framed within the model are concerned with beliefs,
emotion, and ethics and values. First Nation Elders in Hampton et al’s (2010) study express the

evaluative cultural belief that in their traditional worldview the family and community come
together to give energy to the dying person for their journey to the spirit world. Furthermore, by

extension that there is a moral Aboriginal imperative to do so. Inuit participants express that
family and community have a duty and obligations to the dying person, but they do not elaborate
upon the underlying belief despite practicing a similar “community coming together” as some

First Nations in Saskatchewan. However, this belief of family gathering to give energy to the
dying person contradicts western notions that a dying patient should rest with no more than one
or two visitors at a time (Hampton et al., 2010).

First Nation and Metis spirituality. Cultural beliefs on spirituality are described by

family, community and HCP participants in Northern Ontario, Northern Manitoba,
Saskatchewan, and British Columbia. Though the language used by some Elders reflects the

influence of their Christian belief system they describe traditional protocols that are still in
practice while others are no longer practiced (Hampton et al., 2010). Hotson et al., (2004) in
Northern Manitoba, found that HCPs state that western religion played a larger role in the
communities that they worked in, and they acknowledged that there were traditional beliefs
concerning death and dying but were unable to articulate what those beliefs were. Kelly et al.,
(2009) in Northern Ontario found that spiritual care is important to most families. Dialogue

Example 1 ) “she brought communion every Sunday and the traditional people would come in
and do that too,” Elder (pp. 393e-4-5). In Hampton et al’s (2010) study, a community participant,
describes death as being part of life for Aboriginal people. Example 2) “I think the important
thing for the health care providers to know is that for Aboriginal people death is part of life, it’s

64

part of living. And it’s as necessary as birth” (Hampton et al., 2010, p. 9). Furthermore,

community participants in Saskatchewan express a belief that the spirit of the dying person was

released from their body at the precise moment of death and that the life force now free to move
on (Hampton et al., 2010). Example 3)

“We came from somewhere and we’ll go somewhere. That life force, that life energy,
doesn’t just dissipate. It just moves on. And when a body can no longer sustain that life
force, then that’s what happens. And many times the body is too broken or diseased or ill
to maintain that life force, so it has no choice but to go on. And I think that’s an
important thing to remember and an important thing for people to know. It’s the circle of
life, it’s on the medicine wheel, and it continues,” Elder Betty (Hampton et al., 2010, p.
H).

Community informants in Hampton et al’s (2020) study, acknowledge the importance of
traditional protocols for death and dying, and they also acknowledge the importance of
respecting the unique needs and differences between persons at EOL(Hampton et al., 2010).

Example 6)
“Everybody would have their own way of doing things. Everyone would have their own
journey. And it’s never going to look the same. It’s not like takin the number 1 to Regina,
you know, and you’re going to see certain things along the way and encounter certain
things along the way. Everyone. . .because the Creator make us so unique that even that
way of going is unique. So there’s not one way of doing it. Everyone will have their own
way,” Elder Betty (Hampton et al., 2010, p. 12).
Castleton et al., (2010) found in British Columbia that HCP perspectives on Aboriginal

spirituality were contradictory and were composed of assumptions and generalizations. The
generalization that all Aboriginal people smudge and the assumption that most Aboriginal people
do not practice traditional beliefs (Castleden et al., 2010). Some HCP respondents acknowledge
that providers are not aware of the cultural needs of Aboriginal patients in the West Kootenay

Area of British Columbia (Castleden et al., 2010). From these participants descriptions,

spirituality is important to most of the surveyed respondents with both a traditional and Christian
belief system that culturally emphasised respect for the dying person and family in EOL care.

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First Nation and Metis worldview features. When these dialogue examples are framed

within the model the following features emerge, conceptualization on time, ethics, values, and
judgement. In the second dialogue statement from Hampton et al’s 2010 study, time is

conceptualized as being part of an implicit circle of life metaphor and as part of a cycle of death
and birth. In the third example the community participant makes an explicit metaphorical

reference to the circle of life, and medicine wheel and by extension death is a journey that

conceptualize time as a cycle that never ends. Hampton et al., (2010), documents the voiced
conceptualization of time as both linear with discrete periods characterized by a beginning and
end, and time as cyclical that never ends. Kelly et al’s (2009) study documents that Northern

Ontario community participants express the cyclic concept of time as, “I think everybody should

be educated on the circle of life” (Kelly et al., 2009, p. 395e5). Kelly et al’s (2009) findings also
makes reference to time as linear with discrete periods, “The doctor told me that [my spouse] had
6 months to a year, and she didn’t even last a month” (Kelly et al., 2009, p. 395e3). In this

example time is mechanistic and linear measured in months and years (Sharma, 2012). In
Castleden et al., (2010), the perspective of non-Aboriginal HCPs in British Columbia, documents

time as linear and make no reference to time as cyclical. Thus, these examples demonstrate that

for some First Nation and Metis people the worldview feature of time conceptualization is
different from western conceptualizations.
In the second example of dialogue from Hampton et al’s 2010 study, the modeling
suggests both an evaluative dimension cultural belief statement on traditional spirituality, an

evaluative cultural dimension statement on the value of reciprocity, and an evaluative cultural
dimension judgement statement on spiritual connection between worlds. Example three and

example six from Hampton et al’s 2010 study, also makes evaluative dimension statements on

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the value of respect in that everyone has a unique need in EOL, and all needs should be

respected. Thus, from the dialogue some First Nation and Metis people worldview features
include a cultural value for traditional spirituality, reciprocity, spiritual connection, and respect.
First Nation and Metis sense of place and importance of traditional medicine, food,
and healers. Castleden et al., (2010) reports that Aboriginal respondents and HCPs who were

actively involved with Aboriginal care recommended that Aboriginal patients have access to

traditional medicine and traditional food. In Kelly et al., (2009) study, family and community

participants express on orientation to community and home as the preferred place for care and
dying. Example 1) “Now that I know I’m dying; I want to go home and see my children and my
grandchildren. I haven’t seen them in a long time” (Kelly et al., 2009, p. 395e5). Hotson et al.,
(2004) community participants expressed a similar view that most or all community members

would prefer to die in community to be near family and friends. Community members in
Saskatchewan believe that a dying person could benefit from both western medicine and

traditional Aboriginal healers (Hampton et al., 2010). Example 2) “Ask them to come in, Elders.
Priests. Spiritual leaders, women who are very strong in their medicine. You know, they’re out
there, waiting to be called,” Elder Art (Hampton et al., 2010). Example 3) “Well I think it’s

better to be worked on both ways with a doctor and with the Indian culture, you know?” Elder
Lena, (Hampton et al., 2010, p. 11). Hampton et aL, (2010) note that it is more spiritually and

emotionally healing to offer foods that bring comfort to the dying person rather than medically
restrictive diets (Hampton et al., 2010). Kelly et al., (2004) report participants expressed
satisfaction with the hospital practice of providing tea and cookies and noted that culturally
sharing tea is a “common social discourse” (p. 395e5). Thus these Aboriginal practices have
different assumptions then the ones that western HCP operate from in the provision of medical

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diets designed to restrict a dietary element be it fluids, sodium, fat, or protein.
First Nation and Metis worldview features. When these dialogue examples are

framed within the model the following features emerge, conceptualization of space, preference,
feeling, and importance of traditional food. In the first example from Kelley et al’s 2009 study,

participants express a desire to die at home and the conceptualization that this space is of great
value. Attached to this statement is the orientation to family through the expressed desire to see
children and grandchildren. Thus, this statement is framed in both a cognitive dimension

conceptualization on space, self-concept, and an affective dimension statement on feeling “go
home and see my children” (Kelly et al., 2009, p. 395e5). In the second example from Hampton
et al’s 2010 study, the statement relates to an evaluative dimension statement on the cultural

value of traditional medicine, traditional healers, and traditional food as being integral to cultural
knowing.
First Nation and Metis importance of respect. First Nation and Metis Elders informants
in Saskatchewan express great respect and appreciation for death and the enactment of their

traditional protocols and use of sacred knowledge passed down intergenerationally (Hampton et
al., 2010). In Saskatchewan a community participant expresses the belief that Aboriginal

behaviour influences spiritual outcomes. Example 1)
“Our belief is that what we do here affects them over there and what they do over there
affects us here. So we want to keep that communication open and well between the two
worlds. So how we conduct ourselves here when they pass on is an important thing. To
be respectful of that person and to be respectful of everybody around you. Everybody
goes through that journey differently. Everybody mourns differently. Just because
someone doesn’t mourn the way you do doesn’t mean to say it’s wrong. It’s just their
way. Now we have rooms in hospitals where you can go. We have a room now where we
can go and do ceremony in Saskatoon and Regina...but not right in the rooms where the
patients are. I know a lot of hospitals, yet we can’t bum sweet grass,” (Hampton et al.,
2010, p. 9).

Aboriginal family members in Kelly et al., (2009) study comment upon respect in dying.

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Example 2) “I guess it’s all part of our culture with respecting a dying person” and “principle of
the health care system has to be respect

—respect for the differences we have” (Kelly et al., 2009,

p. 395e3.

First Nation and Metis worldview features. When these dialogue examples are framed

within the model the following features emerge conceptualization of space and an evaluative
belief in spiritual connection between worlds. In Hampton et al’s 2010 study, in example one the
Elder participant expresses a cultural belief in the interconnection of the secular and spiritual
worlds and the important correlation of correct behaviour. This belief may also relate to the
reluctance of some Aboriginal participants to engage in serious illness conversations. This

participant also notes the importance of space and more importantly the ability to perform ritual
and respect in the space of the dying person. In Kelley et al’s 2009 study, in example two further

emphasis is placed upon the cultural importance of respect in general and in particular for respect
of differences. Thus, this evaluative dimension features on cultural beliefs concerning behaviour,
and cultural value of respect, combined with the cognitive dimension feature of space utilization

are dissonant with hospital policy limitations.
Healthcare providers beliefs on Aboriginal palliative care. In the West Kootenay

Region of British Columbia HCPs identified mostly “white people” in institutionalized palliative

care settings (Castleden et al., 2010, p. 486). Importantly, HCPs acknowledge that more white,
middle-income people use palliative care because it was more culturally accessible and imply
that standard palliative care services are culturally inaccessible to Aboriginal people (Castleden

et aL, 2010). Many HCPs in the West Kootenay region felt that Aboriginal people were absent

from formal palliative care settings due to a lack of awareness of palliative services, or due to

exclusion from said services, or due to being cared for in private home settings (Castleden et al.,

69

2010).

HCPs in the West Kootenay region felt that cultural access was equal but that not all
groups had interest in using palliative care services (Castleden et al., 2010). Some HCPs in the

West Kootenay region believed that cultural differences were set aside and that patients had
equal access to palliative care services (Castleden et al., 2010). Some HCPs in the West

Kootenay region felt that palliative care services were delivered on an individual basis depending
upon the family (Castleden et aL, 2010). While some HCPs in the West Kootenay region

acknowledged that some marginalized populations have been subject to unequal and
discriminatory treatment (Castleden et al., 2010).

HCPs in the West Kootenay region generalized about different cultural groups when
discussing “cultural needs in palliative care” (Castleden et aL, 2010, p. 487). HCPs in the West

Kootenay region made generalizations and assumptions about Aboriginal people within the
context of palliative care (Castleden et al., 2010). Some HCPs in the West Kootenay region

generalized that all Aboriginal peoples smudge or bum traditional medicines containing sweet

grass, or sage as a cleansing spiritual practice (Castleden et al., 2010). Many HCPs in the West
Kootenay region generalized that most Aboriginal peoples do not practice traditional spiritual
practices (Castleden et al., 2010).

Cultural EOL preferences
Inuit EOL preferences. Findings for cultural EOL preferences include location of care,

patient preference for family caregivers, and preferences for HCP to be from the community.
Inuit preference for location of care. Galloway et al., 2020, Vincent et al., 2019, and

Hordyk et aL, 2017 all found most Inuit patients prefer to die at home. Hordyk et aL, (2017)

found in Nunavik that many family members and HCP participants report that most persons wish

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to die in their homes, in their home communities, surrounded by their friends and families.

Example 1)

“I’m sick again. I want to be able to die at my house. I don’t want to be stuck in the
hospital, being fed by, and trying to be kept [alive] by, equipment. I know I’m going. We
are all going to die. So, I would like to die at my house. Daughter’s account of father’s
words,” (Hordyk et al., 2017, p. 650).
Galloway et al., (2020, p. 6), participants in Nunavut expressed that their family members

wanted to die at home in their home communities. Example 1) “[My parents] they just wanted to
go home and be home and be with family and die at home.” Furthermore, Galloway et al.,
(2020) found family participants consistently expressed a preference for EOL to be in home

communities and at home if possible. Example 2)

“She wanted to stay home. We kept her home . .. She did not want to be in the hospital in
Yellowknife because that is not where her family is. I have six aunts and uncles in the
community. She wanted to be with her kids and her grandkids and - and her great
grandkids - we just didn’t want her gone,” participant four, (Galloway et al., 2020, p. 6).
Vincent et al., (2019) in Nunavut found that HCPs also described that Inuit patients want to

die at home. Example 3)
“Culturally speaking, the Elders want to die where they lived. They want to be with the
family when they pass on, and a lot of the Elders [we have seen] recently have been
refusing to go to Ottawa because they know there’s a chance if they go down, they’re not
coming back; and if they’re told that a lot of them will refuse to go to Ottawa because
they want to die on their own terms, in the community,” Interview 1 (Vincent et aL, 2019,
p.el67).
Vincent et al., (2019) HCP participants describe the importance of community to Inuit patients

and family and note that patients have a strong desire to receive medical care in their home
communities. Example 4)
“What I’ve witnessed is just a very strong desire by the patients and their families to want
to be cared for at home ... as they do want to live and die in their home surroundings and
environment with their families present,” Interview two, (Vincent et al., 2019, p. el 66).

Vincent et al., (2019) HCP participants noted contradictorily that not everyone is

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comfortable with palliative care at home. Example 5)
“So, there are certain patients that definitely feel more comfortable being in a hospital
setting, where others would much rather be at home, and that’s something I would say
really differentiates palliative care here from a lot of other places,” Interview thirteen,
(Vincent et al., 2019, p. el66).

HCPs in Nunavik report that the location of palliative care is dependent upon several factors

including: the potential medical complications and capacity of family and community resources
to deal with these, the presence of a formal palliative care plan for the patient, the presence of

adequate health care personnel and involved family members to provide direct care, the
availability of beds in the community health care center or hospital, and the ability and desire of
the patient to tolerate transport back to their community (Hordyk et al., 2017). Thus, Galloway et
al., (2020), Vincent et al., (2019), and Hordyk et al., (2017) all found that most Inuit patients

have a preference for EOL care in home communities and a preference to die in their own
homes.
Inuit worldview features. When these dialogue examples are framed within the model

the features of self-concept, feelings, preferences emerge. In example one from Hordyk et al’s
2017 study, the participant expresses a preference to die at home both as a self-concept and

preference. Self-concept in the orientation to home and family and expressed preferences for care
at home and not in hospital. In example two from Galloway et al’s 2020 study, a similar pattern
of family orientation and preference not to be in hospital emerges. In the third example from
Vincent et al’s 2019 study, an HCP describes an Inuit characteristic of independence with the

phrase on their own terms and a preference for care in community. In the fourth and fifth
examples also from Vincent et al’s 2019 study, again an HCP describes Inuit preference to
receive care at home and to die at home, and the contradiction that some Inuit prefer to be cared

for in hospital. Thus, these dialogue examples convey an Inuit sense of self-concept orientated to

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family, community and culture, independence as an Inuit cultural characteristic and cultural

preferences for care.
Inuit preferences for family caregivers. Galloway et al., (2020) in Nunavut found

patients expressed preferences for family members to provide care. Hordyk et aL, (2017) reports

that family members of dying Nunavik Inuit patients often provide direct patient care alongside
nurse and physician bedside care. In Vincent et aL, (2019) study HCPs report on the role of

family in EOL Care. Example 1) “I think family tends to be a very important thing and lots of

people want their families around and the families want to be around, so that kind of supportive
family environment,” interview thirteen (Vincent et al., 2019, p. el 66). Thus, Galloway et al.,
(2020), Vincent et aL, (2019), and Hordyk et aL, (2017) all found that most Inuit patients have a

preference for family members to provide EOL care, and family members expressed a preference
to provide care to their dying family members.

Inuit worldview features. In example one HCPs express the Inuit preference for family

caregivers and the worldview feature of self-concept with an orientation to family, community,
and culture.
Inuit preferences for HCP that come from the community. Galloway et aL, (2019)

family participants express a positive regard for Inuit homecare workers work ethic, closeness to
the culture, and closeness to the family due to time spent with the family in community. Example
1),

“The homecare workers, ... they are some of the hardest workers ... people in town. And
I think that because they’re primarily from [town] they knew the language - they know
the language, they know the family history. They tried to make it as comfortable as
possible for my [Grandmother] ... They were very close to us because they had spent
quite a bit of time with our family,” Participant 4 (Galloway et aL, 2020, p. 8).
They also found that Inuit participants in their study had a preference that HCPs utilize cultural

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resources within the community as a necessary prerequisite for working with Inuit people

(Galloway et al., 2020; Hordyk et al., 2017).
Inuit worldview feature. When this dialogue example is framed within the worldview

model the following features concerning , self-concept, cognitive beliefs and the value of

relationships emerges. In example one, from Galloway et al’s 2020 study, HCPs express the Inuit

preference for family caregivers and the worldview feature of self-concept with an orientation to
family, community, and culture. In the second example the family perspective uses a close and

far metaphor to delineate us and them and the closeness of the other. Preference is expressed and
the cognitive belief that HCP caregivers need to be culturally closer to the family than the other.

Participant four, voices that language, recognition of history, and cultural closeness leads to
acceptable and accommodating palliative care: furthermore, describing the importance of
relationship to the patient and family in providing this care.
First Nation and Metis EOL preferences. Findings for cultural EOL preferences

include location of care, preference for family caregivers, and a preference to care for family.
First Nation and Metis preferences for location of care. Hampton et al., (2010) in

Saskatchewan and Kelly et al., (2009) in Northern Ontario found an expressed cultural

preference for EOL care to occur in home communities. Kelly et al., (2009) family participants
report some Aboriginal patients prefer to die at home while others prefer to be in hospital.

Example 1 ) “Other elders I have worked with, they have asked to go home, and they wanted to
die at home,” family member, (Kelly et al., 2009, p. 395e5). Kelly et al., (2009) family

participants voiced that family and relatives often had to travel far from the north for attendance
after death and had noted difficulties with arranging to have dying loved ones travel back to their
home communities. Hotson et al., (2004), in Northern Manitoba, reports that community

74

informants felt that most elderly members of their community would prefer to die at home with
some contradictions. Example 2)

“The only reason someone wouldn’t want to die at home sic [are] so they don’t bother
their families. Also, some spiritual beliefs sic [are] that dying at home would leave part of
the {dying person’s] spirit behind, which would be negative for the family,” Aboriginal
leader (Hotson et al., 2004, p. 31).
The Hotson et al., 2004 study is the only primary source that reported the idea that dying at home
would leave part of a person’s spirit at home. Hotson et al., (2004) noted that unwillingness to
relocate and fear of unfamiliar environments were factors in patient decision making to remain at
home or travel to southern referral centres. Hotson et al’s (2004) community informants state

that some people may refuse to go to a larger center and may choose not to accept treatment and
this should be respected.
Castleden et al., (2010) study reported that some HCPs expressed a belief that Aboriginal

people return to home territories to die. Example 3)
“[Aboriginal people] go back where they came from... I’ve seen it happen a couple of
times where the services become increasingly difficult to access, and they just they return
to the place familiar to them. . .we don’t keep them here... But there’s definitely a pattern
in this community where [Aboriginal] people leave the community,” HCP participant
(Castleden et al., 2010, p. 487).
Importantly the HCPs in Castleden et al’s (2010, p. 487) study note that Aboriginal people
leave the West Kootenay Region communities when “services become increasingly

difficult to access.” Thus, Hampton et al., (2010), Hotson et al., (2004), Kelly et al., (2009)
and Castleden et al., (2010) all found expressed preferences for location of care, but for

different reasons and different degrees of palliative care accessibility.
First Nation and Metis worldview feature. When this dialogue example is framed
within the worldview model the following features concerning preference and cultural

belief. In the first examples from Kelley et al’s 2009 study, participants express a

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preference to die at home while in the second this belief is contradicted due to a different

cultural spiritual belief. In example three from Castleden et al’s 2010 study, HCPs
comment on the same phenomenon of Aboriginal people preference to die at home. By

inference these are also statements on self-concept orientation to family, community, and
culture.
First Nation and Metis preferences for family involvement in care. In
Saskatchewan, Hampton et al’s 2010 study found community informants note the

responsibility of family towards their dying family member. Example 1 )

“I believe that the family have that right and privilege to prepare themselves and the
person that’s going to leave for another world. To go into another world. And I think
Indian families in the traditional way believe that when they gather together at the
deathbed and they’re praying, they’re praying in their own way,” Elder Isabel, (Hampton
et al., 2010, p. 10).
First Nation and Metis worldview feature. When this dialogue example is framed within

the worldview model the following features concerning ethics, values and judgement emerges. In
this example from Hampton et al’s 2010 study, community participants speak of responsibility,
privilege, and prayer. This is a cultural ethical perspective on responsibility (or what is right) to
family and community and a cultural self-concept orientation to family, community, and culture.
EOL communication
Inuit EOL communication. Findings include language customs, cultural
communication, cultural value of trust in communication, importance of medical interpreters,

and palliative care conversations. Communication difficulties are encountered when families felt

that patient concerns where not listened to or responded to appropriately by providers, when

diagnostic or treatment information was conveyed by phone, when family members were not
given accurate information concerning their loved one’s diagnosis or care, when providers in

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southern hospitals used medical jargon, when family members were used as translators, and
when southern providers relied upon unqualified translators (Galloway et aL, 2020; Hordyk et
al., 2017; Vincent et al., 2019).

Inuit language customs. In Nunavik, Inuktitut is spoken by 95% of residents with

English as a common second language for those under 40, and there is some French language
fluency (Hordyk et al., 2017). HCPs mostly speak French with some English speakers (Hordyk
et aL, 2017). Most healthcare professionals in Nunavik are non-Inuit and come from southern
centers (Hordyk et aL, 2017). These professionals are locally designated Qallunaat (white

people) as non-Inuit medical staff living in the Canadian north (Hordyk et aL, 2017). Hordyk et

aL, (2017) note nurses often feel unprepared for the cultural and social realities of the north and
most had minimal knowledge and training on “cultural communication norms and local

traditions” (651). HCP express varying degrees of acceptance in northern communities, but
express that they remain outsiders irrespective of the amount of time they spend in country

(Hordyk et aL, 2017). Family members also expressed concern with a lack of accurate
information being given to them about the patient’s diagnosis and treatment and frustration with

HCP use of medical jargon (Galloway et aL, 2020).
Inuit cultural communication. Galloway et aL, (2020) found family participants expressed

concern that Inuit forms of non-verbal communication may be misinterpreted by HCPs not
familiar with local dialects and Inuit gestures. Specifically that non-Inuit HCPs outside the

culture do not understand Inuit mannerisms to the detriment of their care; consequently, other
family members expressed concern that HCPs didn’t listen or respond to Inuit patients’

description of symptoms (Galloway et aL, 2020). Particularly the assessment of pain was
described by family members as inadequate and that HCP often mistook a failure to request pain

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medications or rate pain high on pain scales as an absence of severe pain (Galloway et al., 2020).
My mom ... I would say she was on um pain of nine, but she would downplay that pain.
She would - she would be like crunched up like holding her stomach and she’s like
‘mmm’ and she wouldn’t let me - she wouldn’t let me press the button to get pain
medication until she was like - she was crying of pain. Participant 6 (Galloway et aL,
2020, p. 7)

Here family members perceive the patient’s pain, but stoic attitudes from their dying family
member prevent them from asking for pain medication until the situation becomes unbearable.
Inuit worldview features. This dialogue suggests an affective cultural dimension feature

of sensory perception. There is an implied tension here of HCP (other) inability to perceive non¬
verbal cultural communication and at the same time stoicism (or other factor) in the patient
prevents asking for pain medication. Family members perceive this as cultural dissonance

between provider and patient. There is no mention in the voiced dialogue as to whether previous
healthcare encounters have influenced this provider patient dynamic.
Inuit cultural value of trust in communication. The issue of trust emerged as a finding
in Hordyk et al’s 2017 study especially due to the sociocultural history of institutional care in

Nunavik and the lack of cultural training in HCPs. Nurses new to Nunavik were often

inexperienced with cultural modes of communication and needed to learn by trial and error
which sometimes led to errors in communication and a breakdown of trust in the care

relationship (Hordyk et al., 2017).
Inuit importance of medical interpreters. Galloway et al., (2020), Vincent et al., (2019),
and Hordyk et aL, (2017) all found participants reporting on the critical use of medical

interpreters in the delivery of effective palliative care, and the need for greater palliative care
training of medical interpreters. In Galloway et al’s (2020) study, family members noted the

importance of translation services for care delivery and expressed concern that southern HCPs

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sometimes used unqualified translators. Hordyk et al., (2017) report a shortage of interpreters
and like Vincent et al’s findings they deem interpreters as critical for EOL conversations with
Inuit patients and their families (Hordyk et al., 2017). Interesting that HCPs and interpreters in
Hordyk et al’s (2017) study report a lack of interpreter training in palliative care and a lack of
training in how to collaboratively work together with HCPs. While Galloway et aL, (2020)
reports on the cultural complications of using family members as interpreters to deliver

distressing information to patients with HCPs being unaware of the cultural implications. Vincent
et aL, 2019 and Galloway et al., 2020 family and HCP participants expressed difficulties with

family members being pulled into care as translators for patients receiving difficult or

complicated medical information: “... there are families out there who are unilingual. And the
kid or the partner will go down as the escort but that does not necessarily mean that they have all
the Inuktitut words to translate these medical terms,” participant six, (Galloway et al., 2020, p.
7). Using family members as interpreters was found to not be a culturally safe practice, and

potentially harmful to the HCP patient-family relationship (Galloway et aL, 2020; Hordyk et aL,
2017; Kelly et aL, 2009; Vincent et aL, 2019). Vincent et aL, 2019 HCP participants note the

particular barrier of not having Inuktitut interpreters available and the effect this has upon the
goals of care and advance planning conversations (Vincent et aL, 2019).
Inuit palliative care conversations. HCPs in the study sample voice frustration with EOL

conversations with Inuit patients and their families; furthermore, they express difficulties with
goals of care and advance planning conversations using family members as translators (Vincent
et aL, 2019). Vincent et aL, (2019) HCPs noted that different cultural expectations surrounding

death and dying led to barriers in care, especially concerning a “reluctance or conscious decision
by patients and families to not discuss goals of care or end of life care planning” (p. el 66).

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Translators comment upon the culturally inappropriateness of using a family member to have a
serious illness conversation with a dying family member (Vincent et al., 2019). Vincent et al.,
found HCP participants noted that when helping patients and families with life-limiting illness
make goals of care treatment decisions, their desire for possible transfer out of community for
further investigations or treatments must be evaluated as part of their plan of care. HCPs initiate

palliative care planning when there are no interventions to halt the progression of the terminal
illness or when patients refuse medical interventions and request to go home (Hordyk et al.,
2017).

First Nation and Metis EOL communication. Findings include language customs,

cultural communication, importance of medical interpreters, and palliative care conversations.
First Nation and Metis language customs. In Northern Ontario family members

expressed a need for physicians to communicate directly and respectfully with the patient and
family and to use words of encouragement without instilling false hope (Kelly et al., 2009).
Kelly et al., (2009) found culture beliefs impacted family communication and decision making.

Example 1) “It’s always the elder we go to, in our family anyways, and in most other families
that I know,” family member, (Kelly et al., 2009, p. 395e3).

First Nation and Metis worldview features. This first dialogue example suggests an

affective cultural dimension feature of self-concept, preferences, and values. Self-concept in the
orientation and deference to Elders. Preferences for a cultural method of decision making to
involve the Elders, and a judgement statement on this being right for this family.
First Nation and Metis EOL communication. A Castleden et al., (2010) HCP participant

noted that a lack of cultural training may precipitate cultural misunderstandings in misreading

pain and family support. Example 1) I’m sure some different cultures might be misread with

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regard to managing their pain or supporting the family, those kinds of issues,” Castleden et al.,
2010, p. 487). Kelly et al., (2009) comments upon the need to assess non-verbal cues in pain
management for Aboriginal patients.

First Nation and Metis worldview features. This first dialogue suggests an affective

cultural dimension feature of sensory perception. Family members perceive a cultural dissonance
between provider and patient in the misinterpretation or lack of interpretation of non-verbal pain

cues.
First Nation and Metis importance of medical interpreters. Kelly et al., (2009) found

that interpreters are a key element in communication with Aboriginal patients and that they
played a role in palliative care beyond just language translation (Kelly et aL, 2009). “ Most of the
elders cannot express what they need .... The only people that can really talk to the patient ... are
the interpreters,” (community member) (Kelly et al., 2009, p. 395e4). Subsequently, family
members expressed concern with care practices when interpreters were not available (Kelly et
al., 2009).

First Nation and Metis palliative care conversations. These difficulties in HCP

communication to family were encountered when physicians deliver bad news directly to

patients and due to privacy legislation, they give vague information to the family on the medical
details of the patient. Cultural beliefs that bad news may be self-fulfilling and harmful to the

patient limits the use of goals of care and advance planning conversations (Kelly et aL, 2009).
Vincent et al., (2019) HCPs noted that different cultural expectations surrounding death and

dying led to barriers in care, especially concerning a “reluctance or conscious decision by

patients and families to not discuss goals of care or end of life care planning” (p. el 66).

In Vincent et al., (2019) study HCPs express frustration with implementing the medical

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interventions of goal of care conversation and advance care conversation. Example 1) “[the]
conscious decision to not talk about it [goals of care and EOL care planning] is probably the
biggest barrier that I’ve encountered,” interview thirteen, and example 2) “when it comes to

clinical conversations like code status and EOL planning, you know it’s impossible to do it if
you can’t speak the language,” interview five, (Vincent et al., 2019, p. el 66). Galloway et al.,
(2020) Inuit participants comment upon communication and the inappropriateness of using

family members as translators for goals of care and care planning conversations. While Hordyk
et aL, (2017) participants comment upon communication errors between HCPs and Inuit.

Furthermore, both studies indicate a cultural issue with the difficult conversations of goals of
care and palliative care planning while Vincent et al’s (2019) findings expose the tension and

frustration of HCP trying to implement difficult conversations with a non-culturally receptive
clientele. This demonstrates an explicit difference in cultural values and distinct difference in
worldview that may affect palliative care outcomes.
First Nation and Metis worldview features. This first dialogue infers the worldview

feature of a cognitive cultural belief that is different from the HCP’s belief as to the essential
nature of the goals of care and advance planning conversations.

EOL capacity
Inuit EOL capacity. Findings include referrals and medical travel, and home and

community support.
Inuit EOL capacity referrals and medical travel. In the far North, patents with treatment

needs beyond local facilities are air transferred to acute and long-term centers in Montreal for
Nunavik (Hordyk et aL, 2017), and for Nunavut the referral hospitals are in Edmonton,
Winnipeg, and Ottawa (Galloway et al., 2020; Vincent et al., 2019). Patients and family

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members describe their challenges with travel for diagnosis and treatment to southern hospitals
and the difficulties encountered by their family escorts (Galloway et aL, 2020). Families describe
the burdens associated with medical travel to include childcare, missing work, time away from
home, and the financial costs of travel and lodging (Galloway et al., 2020).

Inuit home and community supports. For Inuit patients who had been hospitalized and

required ongoing medical interventions, arrangements are made for medical palliative care
protocols to be enacted in home communities if there is capacity (Hordyk et al., 2017). Hordyk et
al., (2017) also report that some Inuit Elders refuse treatment in distant hospitals in preference to

die in community, surrounded by family and friends. Families are provided beds and other
materials while sometimes extra nurses are flown in when family and community resources are
overextended (Hordyk et al., 2017). In Nunavik community informants state that EOL

responsibilities for “food preparation, house cleaning, mortician services and funeral
preparations” are shared amongst family members, members of faith organizations, or by the
patients or family friends (Hordyk et al., 2017, p. 649). Community informants report that
community hunters, the local Cooperative store and other stores supply food and food baskets
“during and after the death of a family member” (Hordyk et al., 2017, p. 650). Persons who had
deteriorated in hospital and are unable to travel home, and persons who do not have family and
community supports insitu are unable to be accommodated due to the resource limitations
(Hordyk et al., 2017).
First Nation and Metis EOL capacity. Findings include home and community supports.

First Nation and Metis home and community supports. Community informants in

Northern Ontario and Northern Manitoba describe the supports needed to palliate a patient at
home. Some Aboriginal community participants in Northern Manitoba noted that a “hospital bed,

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a wheelchair, a ramp, running water, a commode, a fan, or air conditioning, a washer/dryer,

adequate heating, and the services of a homemaker” were required to provide home-based
palliative care (Hotson et al., 2004, p. 34). Amenities not always available to all residents of
reserves and remote communities (Reading and Wien, 2013). In Hotson et al., (2004) study,

community participants state that the role of community and family members in home palliative
care is personal support, emotional support, spiritual support, the provision of housekeeping,

cooking and food preparation services, and personal care with feeding and grooming. The role of

HCPs is to provide physical pain control and home visits, and the role of the band council is to
provide financial assistance to the family (Hotson et al., 2004).
EOL resource and policy limitations
Inuit resource and policy limitations. HCPs note resource limitations affect the delivery

of palliative care in the communities that they work in. Resource and policy limitations affecting
EOL care delivery include resource limitations, and collaborative and coordinated EOL care.

Inuit resource limitations. Limited availability of beds in the community health care

center or regional hospitals combined with HCPs inexperience and lack of training with

palliative care were identified as barriers to care (Galloway et aL, 2020; Hordyk et al., 2017;
Vincent et al., 2019). Vincent et al., (2019) found that in Nunavut, HCP participants expressed

challenges with limited resources effecting their ability to provide palliative care in remote
northern communities (Vincent et al., 2019). Family and community participants notes the
limited availability of screening and diagnostic services and expressed a desire for greater

services in community or in the territory (Galloway et al., 2020). Furthermore, in Nunavik, HCP
participants noted that human resource limitations affected local and regional capacity and most
Northern HCPs reported chronic understafifing of facilities and high staff turnover rates (Hordyk

84

et al., 2017). In remote locations most HCPs have a preponderance for emergency and pediatric

skill and knowledge sets and variable palliative care skill and knowledge (Hordyk et aL, 2017).
Inuit collaborative and coordinated of EOL care. The coordination and collaboration of

palliative care between local contexts and distance tertiary care centers was a noted concern for
Inuit patients in Galloway et al., (2020), Vincent et al., (2019), and Hordyk et al., (2017) studies.
First Nation and Metis resource and policy limitations. Resource and policy

limitations affecting EOL care delivery include resource limitations, and coordinated EOL care,
physical spaces, and hospital restrictions.
The First Nation and Metis resource limitations. In Winnipeg, palliative care specialist

participants in Hotson et al’s (2004) study, identified concerns with limited resources and
jurisdictional issues. Castleden et al., (2010) note that culturally sensitive care practices need

dedicated resources to implement and sustain, and HCP participants in their study explained that
they make do with their current resources, but new resources are needed to enhancing palliative

care for Aboriginal people in the West Kootenay region.
First Nation and Metis importance of hospital physical spaces. HCPs in Kelly et al.,
(2009) study state that Aboriginal EOL care involves the whole family and community, so the

facility space needs to be large enough to accommodate a large group. Example 1) “Especially in

our culture, towards the end you need more people. We want not just the family, but friends there
too. Not just immediate family,” community member, (Kelly et al., 2009, p. 395e5). Family

members acknowledged that hospital staff were also involved with EOL care, and they were

grateful for their care (Kelly et aL, 2009). Importantly, Kelly et aL, (2009), made the crosscultural comparison of Aboriginal EOL care practices with those of western cultural practices to

conceptualize Aboriginal palliative care as the combining of a wake with palliative care and the

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necessity of having enough physical space to accommodate this practice (Kelly et al., 2009).
First Nation and Metis worldview features. In example one the dialogue refers to the

cultural conceptualization of space. That the space around a dying family member needs to be
physically large enough to support the number of family and community members needed in
supporting the patient.
First Nation and Metis hospital restrictions. In the hospital setting, some community

participants describe difficulties in gathering their relatives around an Aboriginal person dying in
hospital and express trouble with institutional policy that restricts spiritual practices like
smudging and singing (Hampton et al., 2010). Furthermore, community informants in
Saskatchewan report that “many elders have experienced disrespectful and racist treatment by

health care providers” (Hampton et al., 2010, p. 10).
Recommendations for palliative care improvement
Inuit palliative care improvement. Various participants in Galloway et al., (2020),

Vincent (2019), and Hordyk et al., (2017) report on ways to improve palliative care for Inuit

people. Participants in Galloway et al’s (2020) study believe care can be improved by HCPs if
they would ask families about their traditional Inuit ways of coping with illness and dying in the
community. Participants in Hordyk et al’s (2017) study belief families would benefit from
education on disease progression, care provision, and the dying process. They also recognize the
need for more respite services for families and psychosocial and bereavement supports to family
members (Hordyk et al., 2017). The need for Health care institutions to provide more palliative
and psychosocial support, more facilities, increased staffing, and specialized palliative care
training for interpreters (Hordyk et al., 2017). Vincent et aL, (2019) participants identified that
by building on existing community resources and programs as a viable means to improve the

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quality of Inuit palliative care. They suggest a need for greater continuity of care between health
care providers in remote places, standardization of palliative care practices, and access to a

specialist palliative care physicians familiar with the northern context of care (Vincent et aL,
2019). HCP participants in Vincent et al’s (2019) study felt that the multidisciplinary palliative

care team would benefit from additional education in goals of care discussion, advance care

planning, palliative approach to care, and more understanding in the sociocultural history of the

Nunavummiut to provide culturally sensitive care. Other HCP note the importance of providing
culturally sensitive palliative care by respecting Inuit patient’s wishes and goals of care without

preconceived notions about Inuit rituals or culture (Vincent et al., 2019).
First Nation and Metis palliative care improvement. Elders in Hampton et al’s (2010)

study recommend non-Aboriginal HCPs should ask for assistance from traditional healers and
recruit Elders or ministers to assist families. They also expressed that HCPs should show feeling
and compassion to Aboriginal persons at end of life (Hampton et al., 2010). HCP need education
“to work effectively with Aboriginal patients that are dying” (Hampton et aL, 2010, p. 10).
“I believe that they need to be taught compassion, compassion when they’re training.
Maybe they do, but not in a natural way, not in a way that the Creator would want us to
care. Of course, a lot of them are different religions, but I think that they should respect
Aboriginal people and Indian people when they have the sick in the hospitals. And if they
have to pray in their own way, we can get elders to come in and pray for somebody that’s
dying. And you don’t have to understand what they’re saying. You know, even if they
bum sweet grass and smudge somebody, it’s still ...it was still done long ago. I can’t see
why it can’t be done in the hospital when our Indian people are dying,” Elder Isabel,
(Hampton et aL, 2010, p. 10).

Hospitals should provide family rooms that are large enough to accommodate large numbers of
extended family (Hampton et aL, 2010). Kelly et aL, (2009) note that because Aboriginal EOL
care involves the whole family and community facilities need to be large enough to

accommodate the dying process. “She would name names and then we would call them, and they

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would come down. We would have 20 people in the room and that was really hard because there
was no room for us all. She wanted us there all the time (family member) (Kelly et aL, 2009, p.
395e5). Castleden et al (2010) HCP participants identified the following elements as necessary

for effective Aboriginal palliative care in the West Kootenay region to include an appropriate
physical location and care space, near natural surroundings, large enough for the practice of

ceremonial activities while receiving care, access to traditional foods and medicine, and
reconnection with home territories (Castleden et al., 2010). Castleden et al., (2010) conclude that
increasing cultural safety training may lead to greater access to health care for Aboriginal groups
and new resources were needed to enhance palliative care in the West Kootenay region.
Palliative care cultural consults. Some Aboriginal participants in Galloway et al’s (2020)

and Hampton et al’s (2010) studies voice a belief that palliative care for Aboriginal people could
be improved if HCPs would consult families about their traditional way of coping with illness
and dying, and non-Aboriginal HCPs should ask for assistance from traditional healers, elders,

or ministers.
Palliative care improvement education and training. Some Aboriginal participants voice a

belief that families would benefit from public education on disease progression, care provision,
and the dying process (Hordyk et al’s 2017) while others believed that HCPs need more cultural
education in death and dying in order to deliver appropriate care to dying Aboriginal people
(Hampton et al., 2010). HCP participants in Vincent et al’s (2019) study felt that the

multidisciplinary palliative care team would benefit from additional education in goals of care
discussion, advance care planning, palliative approach to care, and more understanding in the

sociocultural history of the Nunavummiut to provide culturally sensitive care.
Palliative care improvement facility and institutional supports. Some patient and family

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participants expressed the need for health care institutions to provide more palliative and
psychosocial support, more facilities, increased staffing, and specialized palliative care training

for interpreters (Hordyk et al., 2017).
Palliative care improvement community capacities. HCPs also voiced the need for greater

collaboration in continuity of care amongst HCPs, greater standardization of palliative care

practices, and the need for remote access to a specialist palliative care service (Vincent et aL,
2019).

In the next chapter I will discuss some of the implications these findings and features have
upon the provision of palliative care for some Indigenous people in Canada and how nurse

practitioners can bridge some of the cultural gaps present in medical model delivery of palliative
care.

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CHAPTER FOUR
Discussion

The thematic findings of this integrative review are like the thematic findings found in
the extant literature on Indigenous palliative care in the developed countries of Canada, the

United States of America, Australia, and New Zealand as previously described in an Overview of
Indigenous palliative care. The international reviews focus upon the identified needs,

preferences, and barriers to Indigenous palliative care (Shahid et al., 2018), while also examining
palliative approaches and challenges with implementing culturally safe palliative care delivery
(Caxaj et al., 2018). Despite the great diversity of Indigenous communities in Canada,

similarities in themes were observed in the sample studies. The similar themes in Canadian
studies are contextual factors of EOL care capacity, EOL resource and policy limitations, and

cultural factors including EOL beliefs, EOL preferences, and EOL communication. Followed by
the recommendations for Indigenous palliative care improvement.
Much of the extant literature makes reference to cultural differences and expectations of
care, with few explicit explanations of the underlying worldviews. The voiced perceptions of

Indigenous study participants thus hold the key to further understanding cultural assumptions
that underly distinct worldviews. Hiebert’s Worldview Model provides an empiric framework to

make visible some of the implicit assumptions of a worldview. These cultural features of a
distinct worldview can then be observed and compared between cultures. Atleo (2004) presents
“The Theory of Tsawalk a Nuu-chah-nulth worldview” as an explicit translation of a traditional
First Nation tribal worldview that is useful in this review to hypothesizing potential explanations

of observed patterns. Thus, this integrative review can contribute to existing literature by making
more explicit the effect worldviews have upon palliative care delivery for Indigenous people in

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Canada. These findings are situated within the Canadian context and can be used to inform and
improve palliative care delivery in practice and policy development. These findings can inform
the approaches and practices of HCPs working with Indigenous clients. Contextual factors of
resources and sociogeographic context influence accessibility and capacity of palliative care

services for Indigenous people and have policy implications.
Worldviews provides answers to fundamental epistemological questions like those

proposed by Justice Murray Sinclair: Where have I come from? Where am I going? Who am I?
Why am I here? (Sharma, 2012; Sinclair, 2019). Our worldview provides us with reassurance

that we live in one world and validates our sense that the world we see is the way we see it
(Sharma, 2012). Worldview crisis occurs when there is a gap between our experiences of reality

and our worldview (Sharma, 2012). Some Indigenous people experience worldview crisis in

palliative care when expectations and preferences for EOL care do not match western delivery of
this care. Diversity exists amongst the Indigenous study sample and no one way of knowing or
being can be generalized for all Indigenous people in Canada. In the next section this

conceptualization of worldviews is applied to the Canadian themes of EOL beliefs, EOL

preferences, EOL communication, EOL capacity, EOL resources and policy limitations, and
recommendations for palliative care improvement found from the seven primary source articles
and discussed within and between the Inuit and First Nation cultural groups.

EOL beliefs
EOL beliefs on cultural identity, spirituality, family, and community. Most Inuit and

First Nation participants have a strong self-concept orientation to family, community, and culture
(Galloway et al., 2020; Hordyk et al., 2017; Vincent et al., 2019). Participants acknowledge a

preference for care from others who are closer to the respective Inuit and First Nation cultural

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groups (Galloway et al., 2020: Hampton et al., 2010). Acceptance to the group by HCPs is

achieved gradually over time, with a focus on relationship building and repeat positive
interactions with the patient, family, and community. This is a characteristic of practice that is

often thwarted by resource and policy limitations that see chronic understaffmg and frequent
non-Aboriginal HCP rotation in and out of communities (Galloway et al., 2019: Hordyk et al.,
2017). Other Aboriginal participants voice experiences of cultural misunderstanding with HCPs

impacting the care of their loved one and therefore, a preference that HCPs utilize cultural
resources within the community as a prerequisite for working with Inuit people. These resources

could be Elders, cultural training, or translators, or other culturally knowledgeable HCPs. Thus,
these results demonstrate that Inuit and First Nation people want and need more culturally
accessible, acceptable, and accommodating palliative care services in their communities.

Many Aboriginal people profess a need for community at EOL, (Galloway et al., 2020;
Hordyk et al., 2017; Hotson et al., 2004, Kelly et al., 2009; Vincent et al., 2019), while other
First Nations consider this a spiritual need (Hampton et al., 2010). In Saskatchewan, First Nation
and Metis Elder informants explain that in their worldview, family and community come to be
with the dying person “to give energy to the person and to the grieving loved ones” (Hampton et
al., 2010, p. 10). These perspectives are explicit worldview features in the cognitive and

evaluative dimension of culture concerning self-concept and cognitive cultural beliefs

respectfully. Self-concept and by extension cultural identity demonstrate an overarching
orientation to family and extended family living with other families in community. Atleo writes
that community is a natural phenomenon of being and in Nuu-chah-nulth culture,

interdependence with neighbors is a traditional community strength that is predicated upon
“work, perseverance, and endurance” (Atleo, 2004, p. 12). Thus, care in community is an

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essential element of culturally acceptable and accommodating palliative care with many
Indigenous people in Canada.

The worldview features of self-concept, cultural beliefs, and cultural preferences for care
can conflict with the delivery of palliative care in some communities in Canada. Medical travel
to higher level of medical care in the healthcare system, removes the patient from local contexts

and challenges the notion of culturally safe palliative care. Especially when that care is
institutionally based for clients who have been previously institutionally traumatized by

residential schools and Indian Hospitals (Castleden et al., 2010; Hordyk et al., 2017). Hordyk et
al., 2017 in Nunavik and Castleden et al., 2010 in British Columbia both note that due to

previous trauma with institutional settings some Aboriginal people may be further traumatized
by institutional care delivery. This is like Gott et al’s (2018) study findings in New Zealand that
some Indigenous people may perceive specialist palliative care as a colonial byproduct. These
statements are also linked to Kelley et al’s (2009) finding that some younger members of the

community would not support palliative care as an option of care. Though the rational for not
accepting palliative care was not elaborated upon in Kelley et al’s (2009) study, and the reason

for not accepting palliative care in this subpopulation is therefore, unknown. Thus, palliating a

patient outside of their home community and in an institutional setting, may not be a culturally

safe practice (Castleden et al., 2010; Galloway et al., 2020; Hordyk et al., 2017; Vincent et aL,
2019). Lending further weight to the argument that culturally accessible, acceptable, and

accommodating palliative care is home and community situated.
The current conceptualization of Indigenous palliative care in Canada is orientated
towards specialty palliative care delivery contrary to the WHO’s promotion of an integrated

palliative care and primary care approach. Galloway et al., (2020), Vincent et al., (2019), and

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Hordyk et al., (2017) document that for the Inuit, implementation of palliative care occurs when

curative care has failed. For some First Nation people in Kelly et al., (2009) and Hotson et aL,
(2004) studies document that palliative care begins when the patient refuses medical care to go

home. These findings are contrary to the WHO’s and other’s recommendations to initiate

palliative care at time of life limiting diagnosis (Bishop et al. 2021; Collins and Small 2019;
Ferrell et al. 2017; Hawley 2017). These differences in worldview assumptions on evaluative and
cognitive dimension of culture affect Indigenous perception of what is culturally accessible and

acceptable as EOL care. Failure to provide accommodating palliative care services can lead to
less-than-optimal Indigenous patient outcomes and increased suffering.
Thus, EOL beliefs for some Indigenous people suggest the need for holistic person-

centred care that takes into consideration individual beliefs that affect the perception of care
delivery. Nurse practitioner holistic and relational inquiry approaches (Prodan-Bhallat et al.,
2016), can help bridge these gaps in western provision of palliative care and Indigenous

expectations of this care. Furthermore, the value-added aspect of relational practice that attends
to the social justice aspect of Indigenous health care (Brown & Tarlier, 2008) can help mitigate

the health equity issues surrounding Indigenous palliative care.
EOL preferences

Preference for care at home by family. Most Aboriginal patients, families, and

community members expressed a preference for EOL care in community, with the help of family
and community members, and a preference to die at home (Castleden et al., 2010; Galloway et
al., 2020; Hotson et aL, 2004; Hordyk et al., 2017; Kelly et al., 2009; Vincent et al., 2019).

However, contradictions were found by Castleden et aL, (2010), and Hotson et aL, (2004) that
some First Nation and Metis patients preferred palliative care in hospital. Despite these

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preferences for EOL care, many HCPs in Hotson et al’s (2004) study in Northern Manitoba felt

that few Aboriginal patients die at home and most felt that death from life limiting conditions has
been removed from most northern communities (Hotson et al., 2004). Hordyk et al., (2017)
found similar findings in EOL care in Nunavik, that despite preferences for family care in
community, EOL processes had progressively transitioned to southern hospital settings. As noted

in the previous paragraph this transition of care to hospital and other institutional settings out of
home communities is not culturally safe care for some Aboriginal people.
Sense of place and importance of traditional food and medicine. Galloway et al., (2020)

noted the importance of being on the land and consuming traditional foods from the land to the
wellbeing of Nunavut Inuit patients and their family caregivers. This finding is like Hampton et
al., (2010), Castleden et al., (2010), and Kelly et al., (2009) findings on the need First Nation and

Metis people have for traditional food for spiritual, emotional, and physical wellbeing. HCP

respondents in Castleden et al’s (2010) study recommended the symbolic giving of soil from
home territories to “(re)connect dying Aboriginal peoples with their homelands” (Castleden et
al., 2010, p. 489). Galloway et al., (2020) and Hordyk et al., (2017) also noted the importance of

an Inuit sense of place. Internationally Shahid et al., (2018) found that reconnection with home

territory was an Indigenous expressed preference for care. This is consistent and related with
Schill and Caxaj (2019) international findings that highlight the importance of traditional food

for the wellbeing of Indigenous patients. These findings are influenced by the affective
dimensions of culture in the worldview features of feelings, preferences, importance of food, and
in the cognitive dimensions of culture in spatiality and self-concept. Acknowledgement of

differences in the cognitive and affective dimensions of culture influence Aboriginal sense of

place and support resilience of Indigenous people at end-of-life. Or in other words

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acknowledgement of what is culturally important to Aboriginal people is a prerequisite of care.
When these differences conflict with western assumptions of care delivery, problems can occur

especially within the context of western cultural preeminence of the medical model.

This influence is further amplified in the affective dimension of culture concerning
feelings. Family perspectives in the Galloway et al’s (2020) study express a love for being out on

the land and connection to ancestors while using an up and down metaphor both as a literal

spatial reference up that mountain and as a spatial connection to ancestors “up in land from
where my grandparents used to camp” (Galloway et aL, 2020, p. 8). Inuit explicit cultural

preferences indicate an integral orientation on belonging to the Inuit cultural group and a
preference for the other to be connected to the group. In the affective dimension of culture sense
of place is intimately linked with the cultural importance of food. Both Inuit and First Nation

people feel that traditional food has spiritual and emotional healing properties more appropriate
to end of life than medically restrictive diets (Hampton et al., 2010; Hordyk et aL, 2017; Kelly et
al., 2009). These Indigenous people’s practices are founded on different affective assumptions

then the assumptions that western HCPs operate from in the provision of medical diets designed
to restrict a dietary element be it fluid, sodium, fat, or protein. These patterns also indicating a

greater influence of affective dimensions of reality versus western cognitive dimensions of

reality. Atleo (2004) writes that love and respect are core Nuu-cha-nulth relational values
described as “an experience of the heart, of one’s soul of being with one’s own, with the warmth

of belonging in community,” (Atleo, 2004, p. 15).

Preferences for palliative care delivery strongly suggest that for some Indigenous people
as documented from the seven primary source studies, institutionalized palliative care is not

culturally safe care (Kelley & Minty, 2007). Nurse practitioner training in community

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assessment, health promotion and community capacity building (McKenzie, Neiger, &

Thackeray 2017) demonstrates the necessary skills for the development and implementation of

home hospice programs (Wheeler, 2016).
EOL communication
Cultural communication in EOL. Aboriginal cultural preferences and norms of

communication can conflict with HCPs direct manner of communication or get down to business
mode of communication in busy clinic settings. First Nation and Metis expressed preferences are
to “talk from the heart” and not from the head. This cultural communication preference suggests

feeling (affective) is more important than the cognitive or reasoning domains of reality. Thus,
this cultural orientation, suggests that the affective dimension of reality may have greater
influence over cognitive or evaluative though patterns. This observation is concurrent with

Atleo’s (2004) theory of Tsa-walk that human cognition is not the primary source of truth and
the highest form of consciousness occurs “in the realm of creation’s spiritual source” (Atleo,
2004, p. xvi) This influence is different from the dominant western orientation to cognitive and

evaluative dimension of reality (Atleo, 2004; Sharma, 2012). Thus, this cultural communication

norm or receptivity to how information is presented, conflicts with western HCPs medical mode

of communication.
Inuit informants’ express discomfort with family members serving as interpreters to

convey distressing information to patients and the concurrent finding by Vincent et al., (2019)
that patients and families to not discuss goals of care or end of life care planning. Hordyk et al
(20 1 7) states that Missionary influence affect “beliefs concerning whether or not to

communicate terminal diagnoses”, but without further elaboration (Hordyk et aL, 2017, p. 650).
Kelly et al’s (2009) findings offer a different explanation from a First Nation informant in

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Northern Ontario that if First Nation people talk about bad things then these things will happen;
therefore, the traditional view is to not speak of illness (Kelly et aL, 2009). This latter view is

like the findings of Colclough, (2017) and Colclough and Brown (2014, 2019) who examined
Native American beliefs on death taboo, EOL decision making and talking about EOL. Atleo
(2004) describes a traditional belief that because the physical world and the spirit world are

intimately connected, an indirect manner of conversation is employed when talking about

important things. This stems from the cognitive cultural belief that all life is interconnected from
a common origin and all beings have spirits that can communicate with one another (Atleo,
2004). Conversing indirectly is then like a code to prevent spirits from understanding the

meaning of human conversation and communicating in the spirit world to warn an intended
hunting target (Atleo, 2004). This is an explicit worldview perspective that once an action has
been agreed upon it is not directly discussed lest it be discovered and thwarted. This presents an
intriguingly similar explanation to other findings that for some Aboriginal people if illness or
death is spoken about then it will come about or happen (Kelly et aL, 2009; Kelly and Minty,
2007).

Importantly, HCPs in Vincent et al’s 2019 study acknowledge this difficulty with EOL
goal planning and advance care conversations and propose that the solution is more education for
Inuit families, HCPs, and translators. This approach does not acknowledge that there are
fundamentally different understandings of why illness is not spoken about with some Aboriginal

people; therefore, pushing further education on goals of care and advance planning conversations
is to perpetuate the cultural dominance of the non-Aboriginal HCPs. Goals of care and advance
planning are an important element of palliative care, further research is needed in alternate
means and ways to implement with Aboriginal epistemologies and ontologies.

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Some HCPs in this study sample comment on the importance of not having bias towards

Aboriginal culture and ritual by respecting patient goals of care and wishes for care at EOL
(Castleden et al., 2010; Galloway et al., 2020; Hordyk et al., 2017; Hotson et al., 2004; Kelly et

al., 2009; Vincent et al., 2019). In the West Kootenays region of BC, Castleden et al., (2010)

found some HCP participants voice the invisibility of Aboriginal peoples in palliative contexts
due to stereotyping of physical characteristics and the use of appearance as the indicator of
Aboriginal identity (Castleden et al., 2010, p. 486). Furthermore, many Aboriginal participants

and some non-Aboriginal HCP’s voiced experiencing or witnessing disrespectful and racist
treatment by HCPs. Some of Hampton et al’s (2010) Elder participants report commonly

experiencing disrespectful and racist treatment by HCPs. These observations are concordant with
Arnold and Bruce’s 2005 finding that for HCPs differences in worldviews may lead to provider
frustration, cultural domination, and oppressive behavior which perpetuates health inequity.

Shahid et al., (2018) also found for developed countries a reduced uptake of palliative care

services due to disrespectful and racist treatment of Indigenous people and due to differences in
health beliefs and cultural understanding. These findings are similar to those from the Truth and
Reconciliation Commission of Canada (2015), The National Inquiry into Missing and Murdered
Indigenous Women and Girls (2019), and those from the “In Plain Sight Addressing Indigenous-

specific Racism and Discrimination in B.C. Health Care” (2020) report on discriminatory health

care practices.
Many HCP participants in British Columbia voiced inconsistent cultural approaches to
palliative care with some suggesting that cultural differences were cast aside to provide equal
access and care (Castleden et aL, 2010). This equality of care is a western value as noted in

Chapter One, Background (Canada, 2021), that perpetuates an equality discourse that

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individuals have equal agency and responsibility for their social position and behavior

irrespective of their circumstances; thereby, perpetuating health inequity for Indigenous people
(Garneau et al., 2019). While other HCP participants contradicted this view of equality and felt

that vulnerable clients presenting with mental health issues, substance use issues, obesity,
socioeconomic issues, and homelessness were subject to unequal and discriminatory care
(Castleden et al., 2010). These findings are not concordant with Indigenous palliative care and

Indigenous health equity recognition under human rights to health (Connor, 2020; Shahid et al.,
2018; United Nations, 2015; World Health Organization, 2021a). Thus, gains in accessibility and

culturally acceptable and accommodating palliative care are predicated on achieving primary
health equity gains. Nurse practitioner delivery of primary palliative care with emphasis on
relational practice and attention to the social justice aspect of care provision is a means to help
alleviate health inequity for some vulnerable and marginalized populations (Browne & Tarlier,
2008).

EOL capacity

Indigenous patient, family and community participants and non-Indigenous HCPs

respondents acknowledge policy, facility, and human resources limitations in the healthcare
system, and limitations in family-community capacities to provide or support EOL care. A lack

of formal education and training of HCPs in palliative care approaches and assessment was
identified as a barrier to care by both HCPs and participant family and community members
(Castleden et al., 2010; Galloway et al., 2020; Hordyk et al., 2017; Vincent et al., 2019). A lack

of formal palliative care training was also found by Shea et al., (2010) that nurse practitioner
programs have little palliative care content and little development of palliative practice skill and

knowledge. Furthermore, jurisdictional disputes between institutions, agencies, and levels of

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government impede implementation of palliative care improvements (Hotson et al., 2004; Kelly
et aL, 2009; Lavoie, 2011; Vincent et al., 2019). All together these findings are concordant in

Shahid et al’s (2018) international findings for the need for service delivery improvements in

policy commitment, better physical environment, and better access to services. Increasingly
nurse practitioners are making their way into policy decision making tables and have the

potential to influence the delivery of primary palliative care to Indigenous populations.
EOL resource and policy limitations

Palliative care resource limitations influence cultural safety practices and problems arise
when Indigenous palliative patients are dislocated from home community contexts to where the
needed service is provided under the reasonable equal access provision of Canadian Medicare.
This dislocation is due to the limited resources and consequent limited capacity of home
communities to deal with medical complexity due to the rural and remote context (Hordyk et al.,
2017). Some Indigenous patients may perceive this displacement from home to institutional care

as being like the displacement of Indigenous people to residential schools and Indian hospitals
(Castleden et al., 2010; Kelly & Minty, 2007). These actions may retraumatize some Indigenous

people and may further perpetuate loss of cultural identity through the inhibition of practicing
spiritual EOL protocols and through physical disconnection from home territory and community
(Castleden et al., 2010; Kim, 2019).

Some HCPs note that to deliver culturally sensitive and competent care dedicated

resources are needed to implement and sustain such practices (Castleden et aL, 2010; Galloway
et aL, 2020; Hordyk et aL, 2017; Vincent et aL, 2019). Schill and Caxaj (2019) identify the

strength of a cultural competence approach is to challenge non-Indigenous HCPs on assumptions

of universality from a cultural and historical perspective; however, as they point out this

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approach does not acknowledge HCPs power and privilege, western institutional norms, nor does

it factor in historical oppression or resistance. Like the argument that equality perpetuates
inequity for some marginalized populations Schill and Caxaj (2019) make the argument that a
culturally competent approach may enforce stereotyping, essentialization, and perpetuate

palliative care stigmatization. In other words culturally sensitive and culturally competent
approaches maintain the provision of health care from a western cultural preeminence, only
culturally safe delivery with structural change can deliver culturally accessible, acceptable, and
accommodating palliative care services.
Policy limitations conflict with some Indigenous worldviews in the cognitive dimension

of culture where diverse conceptualization of time, space, and self-identity may affect care. In
the affective dimensions of culture some EOL beliefs conflict with western palliative care
delivery. First Nation and Metis perspectives in Hampton et al’s (2010) study demonstrated
differences between Indigenous and hospital policy conceptualizations of ritual or sacred spaces
which cause problems with Indigenous EOL protocols or rituals. These protocols and rituals are

the physical manifestation of the underlying affective cultural beliefs on death and dying. Some

of these cognitive beliefs conflict with western ideals that the dying patient should rest in quiet
and may cause problems with hospital policies on visitors and practices like smudging and
singing (Hampton et aL, 2010). Thus, dislocation to distant care centers undermines the cognitive
dimensions of culture and its underlying assumptions on family, community and their role in
death and dying. Increasing home hospice programs (Wheeler, 2016) and greater accessibility to
PHC (Wong et al., 2011), through nurse practitioner trauma informed practice are potential
means to alleviate the problems inherent in medical model palliative care delivery to Indigenous

populations.

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Recommendations for improvement to palliative care delivery

All seven primary care studies comment upon measures to improve the delivery of
palliative care to Indigenous patients. Many Indigenous participants and non-Indigenous HCPs
voice the need to build capacity amongst existing community resources and programs to improve
the quality of palliative care delivery. These goals are concordant with the WHO statements on
improving universality and accessibility of palliative care services through the integration of

palliative services into primary healthcare and community/home settings (World Health
Organization, 2021a, 2021b).
Implications for practice, policy, and research
Practice implications. The seven primary studies make recommendations for HCP

practice improvements for palliative care for Indigenous populations. Due to the heterogenous

cultural groups represented by the label Indigenous in Canada and the findings that there is no
one size fits all approach caution is needed in any meaningful generalizations. Many of these

studies recommend a culturally sensitive and culturally competent approach to care where the

HCPs knowledge of cultural practices are used to make western care practices more
accommodating to Indigenous clients. However, Schill and Caxaj (2019), conclude that such an

approach is not culturally safe care for a population traumatized by their experiences with
colonization and cultural genocide. Nurse practitioner holistic and trauma informed practice in
PHC is a means to establishing longitudinal care for some vulnerable and marginalized

populations and by extension may be a more effective means for relationship building that is

very important in Indigenous health delivery. Cultural education into the specific practices and
history of the community one works in (Hordyk et al., 2017) is a needed adjunct to nurse

practitioner holistic and relational practice.

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Findings to improve Indigenous palliative care in Canada at the practice level include

HCP should ask for cultural assistance from families, traditional healers, Elders, or ministers
where appropriate (Galloway et al., 2020; Hampton et al., 2010), increasing cultural safety
training for HCP to promote greater access to health care for Indigenous groups (Castleden et aL,
2010), public education on disease progression, care provision, and the dying process (Hordyk et

aL, 2017), importance of building upon existing community resources and programs (Vincent et
al., 2019), importance of respecting patient’s wishes and goals of care without preconceived

notions about culture (Vincent et aL, 2019).
Policy implications. Findings to improve Indigenous palliative care in Canada from the

policy level include physical environment improvements with an appropriate physical location
and care space, near natural surroundings, large enough for the practice of ceremonial activities
while receiving care, access to traditional foods and medicine, and reconnection with home
territories (Castleden et aL, 2010). Hospitals need to provide family rooms that are large enough
to accommodate large numbers of extended family (Hampton et aL, 2010; Kelly et aL, 2009),

more respite services for families and psychosocial and bereavement supports to family members
(Hordyk et aL, 2017), more facilities, increased staffing for existing facilities, and specialized

palliative care training for interpreters (Hordyk et aL, 2017), greater continuity of care between
health care providers in remote places, standardization of palliative care practices, and access to
a specialist palliative care physicians familiar with the northern context of care (Vincent et aL,
2019), multidisciplinary palliative care team could benefit from additional education in goals of

care discussion, advance care planning, palliative approach to care, and more understanding in
the sociocultural history of communities (Castleden et aL, 2010: Hordyk et aL, 2017; Vincent et

aL, 2019).

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Research implications. There is a lack of published empirical data on the subject of

worldviews and palliative care. Further research is needed into specific cultural groups on their
beliefs concerning death, dying and palliative care from a culturally safe lens. To be

operationalized research findings need to be tailored to specific communities and diversity in

preferences, beliefs and practices exist and understanding the particular population that one is
serving is necessary to promote further trauma informed and culturally safe practice.
Limitations

This integrative review contributes to this knowledge gap related to Indigenous palliative
care in Canada and has several limitations. Dialogue analysis has occurred on samples and not

raw dialogue of the seven primary studies. Data overlap between First Nation and Metis

participants and potentially masks the specific experiences of Metis people concerning palliative
care and thus hiding the specific voices of Metis people. Another limitation is in the perspectives

of HCPs were concerned with the delivery of palliative care for Indigenous people and there are

no personal voiced comments upon their personal perceptions of palliative care for their own
family members as a cultural comparison. The findings of this integrative review describe the
themes of traditional and contemporary experiences, EOL beliefs, EOL preferences, EOL
communication, EOL resource and policy limitations, and recommendations for palliative care

improvements. Analysis of the voiced perceptions of Indigenous patients, their families, their
communities, and their non-Indigenous HCP are framed within Hiebert’s Model of a Worldview

and attempt make explicit some of the differences in worldviews between Indigenous and nonIndigenous groups. Further research is needed to continue to close the knowledge gap on this

important aspect of care for Indigenous people through understanding the voiced experiences of
other First Nations.

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In the next chapter I will discuss my conclusions concerning worldviews and the provision
of Indigenous palliative care in Canada and how nurse practitioners can bridge some of the
cultural gaps present in medical model delivery of palliative care.

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CHAPTER FIVE
Conclusion

Senator Murray Sinclair has proposed four questions to facilitate cultural understanding

between Indigenous and non-Indigenous peoples: Where have I come from? Where am I going?
Who am I? Why am I here? (Sinclair, 2019). Differences in our personal and collective answers
to Senator Sinclair’s questions highlight the differences in worldview assumptions that underly

culturally informed beliefs and behaviors of Canadian Indigenous and non-Indigenous people.

There is a diversity of worldviews encountered in this review which should not be a surprising
considering that each Indigenous group is a uniquely evolved adaptation to their local eco¬
system which informed and shaped their cultural identity through a deeply connected sense of

place and group belonging (Tobias & Richmond, 2014). This unique adaptation and deep sense
of place and group belonging has been damaged by Canadian colonial policies of cultural
genocide and assimilation, and their contemporary structural remnants which result in ongoing
trauma and health inequity for some Indigenous people (Dussault et al., 1996; King et aL, 2009;

MMIWG, 2019; TRC, 2015a; Turpel-Lafond, 2020).

Thematic findings from this integrative review include traditional and contemporary EOL

experiences, EOL beliefs, EOL preferences, EOL communication, EOL capacity, EOL resource
and policy limitations and recommendations for palliative care improvement, found from the

seven primary source articles and discussed within the Inuit and First Nation and Metis cultural
groups. Culturally appropriate palliative care for Indigenous people can be determined through
individual patient, family, and community assessment as to preferred cultural practices
concerning death and dying and capacity for care. Thus, there is no one generalizable perspective
amongst the 683 First Nation and Inuit communities in Canada (Government of Canada, 2009;

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OECD, 2020); however, this macroscopic overview may help identify areas of cultural concern

in the delivery of palliative care to Indigenous people in Canada.
Worldview insights into palliative care include many Indigenous people’s self-concept

orientation is to family, community and culture which can conflict with western individualistic
delivery of care, many Indigenous people have a worldview orientation to the spiritual

dimensions of reality, and this may conflict with palliative care serious illness conversation
which may cause palliative care planning and communication difficulties. Recommendations to

push more goals of care and advance planning discussion education on HCP and patients and
families is a culturally unsafe practice. Most importantly culturally sensitive, and culturally
competent approaches to palliative care may marginally improve care delivery for Indigenous

populations, but they do not improve health equity. This insight into the cultural encounter
between patients, families, communities and the other of HCPs impact the perception of the care.
A cultural safe approach to palliative care can help address health equity for Indigenous people
and lead to increased culturally acceptable and accommodating EOL care for Indigenous people
(Schill & Caxaj, 2019).

Paramount to these findings is the need to address Indigenous people’s health equity

concerns and the realization that delivery of health care from the existing western equality
approach can perpetuates further health inequity for some Indigenous people (Blanchet Garneau
et aL, 2019). Non-Indigenous HCPs note that acceptable and accommodating palliative care

occurs when there is an individualized palliative care plan, executed by adequately educated and
trained health care personnel and involved family members, who are supported by local
community institutions and physical environments (Galloway et al., 2020; Hordyk et al., 2017;
Kelly et al., 2009; Vincent et aL, 2019). Nurse practitioners are professionally situated to assume

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the advanced collaborative role that is necessary in the coordination of the interdisciplinary

palliative care team from a longitudinal primary care setting. Furthermore, nurse practitioners are
professionally suited to the role of building EOL capacity amongst existing community resources

and programs to improve the quality of palliative care delivery for Indigenous people in Canada.

Most importantly nurse practitioner relational inquiry and concern with the social justice aspect
of health care delivery may help address health equity concerns (Browne & Earlier, 2008:
Prodan-Bhallat et al., 2016).
A summary of other recommendations include increased family and community

education on disease progression, care provision, and the dying process, increased provider
education in the goals of care discussion, advance care planning, palliative approach to care, and
Indigenous sociocultural history, provision of cultural referrals for non-Indigenous HCPs to ask

for assistance from traditional healers and the recruitment of Elders or ministers to assist
families, establishment of an appropriate physical location and care space, in close proximity to

home surroundings, a large enough care space for ceremonial activities while receiving care,

access to traditional foods and medicine, connection with home territories, health care
institutions to provide more palliative and psychosocial support, more facilities, with increased
staffing, and specialized palliative care training for interpreters, and the need for greater
collaboration and continuity of care amongst HCPs, with greater standardization of palliative

care practices, and the need for remote access to a specialist palliative care service (Castleden et
al., 2010; Galloway et al., 2020; Hampton et al., 2010; Hordyk et al., 2017; Hotson et al., 2004;

Kelly et al., 2009; Vincent et al., 2019).
The strength of this review is in a structured cross comparison of both thematic and a

Worldview model analysis to garner insights from the primary sources to further understanding

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of worldview affects upon the delivery of palliative care with Indigenous populations. This
integrative review contributes to the gap in palliative care literature concerning worldview

perspectives and their affect upon palliative care services. This review adds to the scholarship

that describes and explains the affect worldviews have upon the delivery of palliative care to
Indigenous populations in Canada. Similar identified themes and greater understanding of some

of the cultural differences underlying challenges in palliative care can be used to develop more
culturally appropriate palliative care for Indigenous people in Canada. This work highlights the

opportunities available for nurse practitioners to further develop the practices necessary to
support diverse worldviews and the provision of accessible, acceptable, and accommodating

palliative care to Indigenous populations.

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Footnotes

Indigenous1 Indigenous meaning “originating in an area” according to Wayne Warry (2007)
denotes people’s spiritual connection to the land, primordial sense of cultural identity.

Aboriginal2 Canadian Constitution, Section 35(2) 1982 defines Aboriginal as Status Indians,
Inuit, and Metis peoples. Indian is a colonial term, now replaced by Indigenous preference for
First Nations referring to non-Inuit, non-Metis Aboriginal people. The term Status Indian is a
federal government construct of the Indian Act 1876, inherited from the British treaty Indian
delineating which Indigenous person falls under the jurisdiction of the act (Warry, 2007).

Ill

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121

Table 1.

Database Search Results
Database
APA PSYCH

Search
version

Terms

Terms

Terms

Terms

Target
Hits

Minus

Total

VI

Set 1
+Title

Set 2 +
Abstract

Set 3 +
Abstract

Set 4 +
Text

9

1 book

5

1984-2020

2 population
1 duplicate

English
Peer reviewed

V2

Set 1 +
No
selection

Set 5 +
Title

V3

Palliative
care
major
concept

Indigenous
population
major
concept

72, 056

38, 847

Set 3 +
No
selection

Set 4 +
No
selection

3

0

3

40

5 books

35

CINAHL

VI

Set 2 +
Text

Set 3 +
Abstract

Set 4 +
Text

30

30

Academic
journals

Set 1 +
title

V2

Set 1 +
Title

Set 5 +
Text

Set 3 +
Abstract

Set 4 +
text

11

11

V3

Palliative
care
major
concept

Indigenous
population
major
concept

10

10

51,999

17,438

Set 1 +
Title

Set 2 +
Text

Peer reviewed
English

Academic
Search
Complete

VI

Set 3 +
Abstract

Set 4 +
text

62

2 book reviews

V2

1999-2021
V3

MEDLINE
EBSCO

49

2 newspapers

Scholarly peer
reviewed
English

9 magazines

VI

Set 1 +
Title

Set 5 +
Text

Palliative
care
major
concept

Indigenous
population
major
concept

35, 293

27,212

Set 1 +
Title

Set 2 +
Text

Set 3 +
Abstract

Set 3 +
Abstract

Set 4 +
text

Set 4 +
Text

34

3 magazines

29

2 book reviews

2

2

45

45

122
Academic
Journals

V2

English

V3

Set 1 +
Title

Set 5 +
Text

Palliative

major
concept

Indigenous
population
major
concept

60, 780

29, 700

Set 1 +
Title

Set 2 +
Abstract

care

Peer reviewed
2004-2019

Set 3 +
Abstract

Set 4 +

17

17

12

12

Set 3 +
Abstract

9

9

text

PUBMED
Central

VI

All academic
articles

V2

Set 5 +
Title

Set 1 +
Abstract

Set 3 +
Abstract

3

3

All English

V3

Mesh
Major

Set 2 +
Abstract

Set 3 +
Abstract

11

11

All peer
reviewed

term

palliative
Total
298

Total 24

Total
274

123

Appendix 1
Primary Source Data Matrix
Qualitative Matrix:

Primary Source Data Matrix

Date:

29 April 2021

Article 1
Galloway, T., Horlick, S., Cherba, M., Cole, M., Woodgate, R. L., and Healey Akearok, G. (2020). Perspectives
of Nunavut patients and families on their cancer and end of life care experiences. International Journal of
Circumpolar Health, 79(\), 1766319. mnh. https://doi.org/10.1080/22423982.202Q 1766319
Author(s)
Findings/Recommendatio
Purpose
CASP
Location
Design/Sample
Apprais
ns
year
al
1. Yes,
1) Limited availability of
Qualitative design Nunavut
Galloway,
Goal: “to gather
Horlick,
screening and diagnostic
perspectives from Summative
communities yes, Yes
Cherba,
2. Yes,
services
content analysis
in both the
patients and
Cole,
N-10 adults (3
Yes
families
Kitikmeot
Woodgate, about the
2) Difficulties associated
men and 7
and Kivalliq 3. Yes
Akearok,
4. Yes,
challenges they
regions of
women)
with extensive medical
2020.
Nunavut
faced during their (Galloway et al.,
travel
yes, No
care journeys and 2020, p. 4).
5. Yes,
3) Preference for care in
to explore how
yes, yes,
“Text was coded
yes, yes,
existing services
community
might be shaped
according to units
yes, No
of meaning
4) preference for family
or enhanced to
6. a)No,
(words and
b) No,
better support
involvement in care
phrases), first
their needs.”,
Yes
within data for
7. Yes,
(Galloway et al.,
5) challenges with
No, yes.
2020, p. 3).
each participant
communication
and subsequently
8. Yes,
across participant
yes, yes,
6) challenges with
“We broadened
our focus to
yes, can’t culturally appropriate care
categories. We
tell, Yes
discuss care of
located consistent
9.Yes,
patients who were words and forms
7) role of the land in
of expression that
yes, yes,
experiencing the
healing
Yes
dying process”
conveyed both
8) Value of service
10. Yes,
(Galloway et al.,
meaning in and of
2020, p. 3).
No, Yes
themselves and
providers with strong ties
larger themes
to the community
= 28 yes
identified as
= 6 No
important to the
interview subjects
= 1 can’t
tell
through their
repetition or
emphasis within
the data as a
whole” (Galloway
et al., 2020, p. 4).
Article 2
Vincent, D., Rice, J., Chan, J., and Grassau, P. (2019). Provision of comprehensive, culturally competent
palliative care in the Qikiqtaaluk region of Nunavut: Health care provider’s perspectives. Canadian Family
Physician, 65(4), e!63-el69.
'

124
Author(s)

Purpose

Design/Sample

Location

“To explore
health care
provider’s
perspectives on
the provision of
palliative care in
the Qikiqtaaluk
region of
Nunavut, further
examining their
understanding of
and experiences
with providing
palliative care
services to
Indigenous
patients”
(Vincent et al.,
2019, p. e!65).

N=13 (7
physicians, 6

the
Qikiqtaaluk
region of
Nunavut,

year
Vincent,
Rice,
Chan,

Grassau,
2019.

RNs)

“An exploratory,

qualitative
research approach
(Vincent et al.,
2019, p. el65).
Drawing on a
constructivist
paradigm that
emphasizes the
importance of
engaging directly
with participants
to further
examine what
they know about
how they
understand, and
how they make
meaning of their
experiences”
Vincent et al.,
2019, p. el65).
Thematic analysis
identified
patterns, themes,
and subthemes
within the data
(Vincent et al.,
2019, p. e!66).

CASP
Apprais
al
l.Yes,
yes, yes.
2.Yes,
yes.
3. Yes.
4. Yes,
yes, No
5. Yes,
yes, yes,
yes, can’t
tell, yes,
Yes
6. No,
no, can’t
tell.
7. Yes,
yes, yes.
8. Yes,
yes, yes,
yes, can’t
tell, No
9. Yes,
yes, yes,
yes.
10. Yes,
yes, Yes

Findings

1) Respecting Inuit culture,
end-of-life care planning,
and the role of family

2) Recognize the
importance of the northern
community (sense of
home).

3) Being aware of the
limited health care

resources.
4) Recognize the critical
role of medical interpreters.
5) Improving the quality of

palliative care programs
and resources, as well as
health care provider
training in palliative care
and Inuit end-of-life-care.

= 28 yes
= 4 No
= 3 can’t
tell

Article 3
Hordyk, S. R., Macdonald, M. E., and Brassard, P. (2017). End-of-Life Care in Nunavik, Quebec: Inuit
Experiences, Current Realities, and Ways Forward. Journal of Palliative Medicine, 20(6), 647-655. CINAHL
Complete, https://doi.org/10.1089/jpm.2016.0256
Author(s)
Findings/Recommendatio
Location
Design/Sample
Purpose
CASP
year
Apprais
ns
al
1) Then and now:
l.Yes,
Nunavik
“To better
Hordyk,
N-103
yes, yes.
Contextual factors in Inuit
Nurses 25
Macdonald understand the
, Brassard, factors shaping
2. Yes,
Interpreters 16
EOL caregiving values and
CLSC/hospital
yes.
EOL care in
traditions
2017.
3. Yes
Nunavik to
administrations
2) Sociogeographic
4. Yes,
13
support the
yes, No.
development of a
Social services 12
locations of care
5. Yes,
sustainable model Physicians 7
and associated challenges
of care” (Hordyk
yes, yes,
Spiritual advisors
3) EOL care in home and
5
yes, yes,
et al., 2017, p.
647).
Child educators 5
yes, No.
community contexts
Local
6. No,
governances 6
yes, yes.

125
grief counselors 6
Wellness workers
4
Community/famil
y3
Family workers 2
“Using focused
ethnography, we
conducted
participant
observations and
informal and
semistructured
Interviews”
(Hordyk et al.,
2017, p. 647)

7. Can’t
tell, No,

4) EOL care in local
institutions

Yes
8. Yes,
yes, yes,
yes, can’t
tell, No.
9. Yes,
yes, yes,
Yes
10. Yes,
No, yes.

= 27 yes
= 6 No
= 2

5) EOL care in southern

institutions
6) Sociocultural factors in

care and associated
challenges
7) The importance of trust
between patients and care
providers
8) Development of
sustainable EOL care

can’t tell

Article 4
Hampton, M., Baydala, A., Bourassa, C., McKay-McNabb, K., Placsko, C., Goodwill, K., McKenna, B.,
McNabb, P., and Boekelder, R. (2010). Completing the circle: Elders speak about end-of-life care with
aboriginal families in Canada. Journal of Palliative Care, 26( 1 ), 6-14.
Author(s)
Location
Design/Sample
Findings/Recommendatio
Purpose
CASP
Apprais
ns
year
al
“What would you Purposive
1) realization
Hampton,
Saska tchewa 1. Yes,
yes, yes.
n
Baydala,
sampling
like non¬
Bourassa,
Canada
2. Yes,
Aboriginal health 5 Elders from 5
2) Gathering of
care providers to
yes.
McKayculturally diverse
McNabb,
3) community
3. Yes
know when
First Nations
Placsko,
4. Yes,
providing end -of- (Hampton et al.,
Care and comfort/transition
2010, p. 8)
Goodwill,
yes, No.
life-care for
McKenna,
4) Moments after death
5. Yes,
Aboriginal
McNabb,
families?
“Narrative
yes, yes,
and
yes, can’t 5) Grief, wake, funeral
analyses of the
(Hampton et al.,
Boekelder, 2010, p. 6).
tell, yes,
key informant
2010.
6) Message to health care
No.
video interviews
providers
6. No,
to identify holistic
themes”
yes, can’t
tell.
(Hampton et al.,
2010, p. 8)
7. Yes,
No, Yes
8. Yes,
yes, yes,
yes, can’t
tell, No.
9. Yes,
yes, yes,
No.
10. Yes,
No, Yes
= 25 yes
= 7 No
= 3
can’t tell

126

Article 5
Castleden, H., Crooks, V. A., Hanlon, N., and Schuurman, N. (2010). Provider’s perceptions of Aboriginal
palliative care in British Columbia’s rural interior. Health and Social Care in the Community, 18(5), 483-491.
https://doi.org/ 1 0. 1 1 11 /j. 1365-2524.20 1 0.00922 .x
Author(s)
Design/ Sample
Findings/Recommendatio
Purpose
CASP
Location

year
Castleden,
Crooks,
Hanlon,
Schuurman
,2010.

“To explore
current realities,

particularly the
challenges of
delivering
culturally
sensitive and safe
palliative care for
Aboriginal
peoples in a rural
area” (Castleden
et al., 2010, p.
484)

Qualitative case
study
Thematic
exploration

N=31
Nelson (n=5).
Trail (n=l 1),
Castlegar (n=l 3)

Rural British
Columbia
Trail, Nelson
and
Castlegar

“Interviews were
digitally recorded
and transcribed
verbatim.
All transcripts
were entered into
NVivo 8_
(qualitative data
management
software,
Doncaster,
Victoria,
Australia) and
thematic coding
ensued”
(Castleden et al.,
2010, p. 485).

Apprais
al
1. Yes,
yes, yes.
2. Yes,
yes.
3.Yes.
4,Yes,
yes, No.
5. Yes,
yes, yes,
yes, yes,
yes, No.
6. No,
No, Yes
7. Yes,
yes, No.
8. Yes,
yes, yes,
yes, can’t
tell, No.
9. Yes,
yes, yes,
yes.
10. Yes,
No, yes.

ns

Three themes
1) The visibility of and
access to culturally
sensitive service provision;
2) contradictions in
perceptions of this
provision;
3) and the necessary
elements for providing
culturally sensitive
Care (Castleden et al.,
2010, p. 486).

= 27 yes
= 7 No
= 1
can’t tell

Article 6
Kelly, L., Linkewich, B., Cromarty, H., St Pierre-Hansen, N., Antone, I., and Giles, C. (2009). Palliative care of
First Nations people: A qualitative study of bereaved family members. Canadian Family Physician Medecin de
Famille Canadien, 55(4), 394-395.e7. PubMed. https://pubmed.ncbi.nlm.nih.gov/19366951
Author(s)

year
Kelly,
Linkewich,

Cromarty,
St PierreHanson,
Antone,
Giles 2009.

Purpose/Objecti
ve

Design/ Sample

Location

“OBJECTIVE To
understand crosscultural hospital¬
based EOL care
from the
perspective of
bereaved
First Nations
family members”

“Phenomenologic
al approach using
qualitative in¬
depth interviews”
(Kelly et al.,
2009, p. 394)

Rural
Northern
Ontario

N=10 recently
bereaved

CASP
Apprais
al
1. Yes,
yes, Yes
2. Yes,

Yes
3. Yes.
4,Yes,
yes, No.
5. Yes,
yes, yes,

Findings/Recommendatio
ns

“First Nations family
members described
palliative care as a
community and extended
family experience.
They expressed the need
for rooms and services that
reflect this, including space

127
(Kelly et al.,
2009, p. 394).

Aboriginal family
members
“Semi-structured
interviews were
conducted,
audiotaped, and
transcribed. Data
were analyzed
using
crystallization and
immersion
techniques.
Triangulation and
member-checking
methods were
used
to ensure
trustworthiness”
(Kelly et al.,
2009, p. 394).

yes, can’t
tell, yes,

No.
6. No,
no, can’t
tell
7. Yes,

yes, yes.
8. Yes,
yes, yes,
yes, can’t
tell, No.
9. Yes,
yes, yes,
Yes
10. Yes,
yes, Yes

= 27 yes
= 5 No
= 3
can’t tell

to accommodate a larger
number of visitors than is
usual in Western society.

Informants described the
importance of
communication strategies
that involve respectful
directness.
They acknowledged that
all hospital employees had
roles in the care of their
loved ones.

Participants generally
described them
relatives’ relationships with
nurses and the care the
nurses provided as positive
experiences” (Kelly et al.,
2009, p. 394).

Article 7 (Hotson et al.. 2004)
Hotson, K. E., MacDonald, S. M., and Martin, B. D. (2004). Understanding Death and Dying in Select First
Nations Communities in Northern Manitoba: Issues of Culture and Remote Service Delivery in Palliative Care.
International Journal of Circumpolar Health, 63(1), 25-38. https://doi.org/10.3402/ijch.v63.32708
Findings/Recommendatio
Author(s)
Design/Sample
Purpose
CASP
Location
Apprais
ns
year
al
Hotson,
Culturally sensitive care:
Remote
“To delineate and “44 in-depth
1. Yes,
Aboriginal people living in
Communitie yes, yes.
MacDonal describe the local semi-structured
d, Martin,
s and
2. Yes,
remote communities would
interviews were
palliative care
2004.
services available conducted with a
Winnipeg
prefer to die at home.
Yes
3. Yes.
representational
to residents of
4. Yes,
patients need access to
remote Aboriginal sample of key
yes, No.
family supports and
communities in
informants
5. Yes,
including
northern
traditional services if
yes, yes,
Aboriginal people
Manitoba; to
requested.
resident in remote
yes, can’t
identify attitudes
communities,
Geographic care
tell, yes,
and beliefs about
death, dying and
community
1). patient-specific care
No.
palliative care in
plans be created for use
Elders and
6. No,
no, can’t
these
in the remote community.
religious leaders,
communities; and doctors, nurses,
2). lines of communication
tell.
and allied health
between remote health care
to explore
7. No,
No, Yes
providers and urban
care
obstacles related
8. Yes,
providers working
specialists.
to palliative care
yes, yes,
in First Nations
3).health care providers
service delivery
Communities, as
from the
yes, can’t and family caregivers be
well as specialist
properly trained to fill their
perspectives of
tell. No.
9. Yes,
respective roles.
culture and
service providers
yes, yes,
in Winnipeg.
geographic
4) and appropriate
guidelines and resources be
No.
isolation” (Hotson Thematic
10. Yes,
available in the community
qualitative
et al., 2004, p.
analysis was done
25).
No, Yes
to support this type of

128
on the data
collected. Data
collected from
interviews with
northern
physicians and
nurses was coded
and analyzed”
(Hotson et al.,
2004, p. 25).

= 23 yes
= 9 No
= 3
can’t tell

care” (Hotson et al., 2004,
p. 25).

129

Appendix 2
Theme Data Matrix
Theme #1 Traditional and contemporary EOL experience
Inuit perspective
1. Inuit family and community participants in Inuvik voice an oral history of caregiving traditions where the
sick and elderly were collectively cared for by family and extended family (clans) who shared social
responsibilities (Hordyk et al., 2017).
2. When clan size and clan wellbeing permitted, nomadic caregivers would temporarily settle in location and
provide care to the sick and dying (Hordyk et al., 2017).
3. Researchers report found that at end of life the “homes are filled with family and friends of all ages”
(Hordyk et al., 2017, p. 649).
4. participants report “that as adults and children are present, this accompaniment may include conversation,
song, silence, prayer, games, storytelling, laughter, sharing of food, and assistance with the activities of
daily life” (Hordyk et al., 2017, p. 649).
5. The continuity of traditional Inuit health care practices was impacted by disease epidemics decimating
clans, federal government policies of forced settlement into sedentary villages, forced displacement to
higher levels of care in the south (often without repatriation), and forced attendance at residential schools;
consequently, disrupting the intergenerational transfer of traditional cultural knowledge (Hordyk et al.,
2017).
6. Participants, both Inuit and Qallunaat, expressed concern regarding the unseen impact of colonial practices
that resided in the collective memories of families and how traces of these practices remained in service
delivery (Hordyk et al., 2017, p. 651).
First Nation and Metis perspective
1. Community informants in SK describe a time when the whole community came together to support the
dying person and their family (Hampton et al., 2010).
2. The family would prepare themselves and the dying person for a journey to the spirit world (Hampton et
al., 2010).

3.

Each nation has its own specific protocols or practices to be observed at the passing of one of their
members, this knowledge was passed down through generations (Hampton et al., 2010).

Contemporary EOL experience
Inuit perspective
1 . In Hordyk et al’s (2017) study, they report that Nunavik has 14 communities divided into two coastal
regions with seven communities each with a health clinic staffed with a minimum of two nurses.
Communities of 900 persons or more have a physician while other physicians are flown in monthly and
specialists come four times per year (Hordyk et al., 2017).
2. Researchers report that “each community has an Inuit-trained Christian pastor who conducts fimeral
services rooted in European missionary traditions, including hymns, prayers, scriptures, and burial (Hordyk
et al., 2017, p. 650).
3. Researchers report that “this influence is present in the prayers and scripture reading accompanying
patients at the EOL, beliefs concerning whether or not to communicate terminal diagnoses, beliefs about
death and the afterlife, and funeral preparation” (Hordyk et al., 2017, p. 650).
4. HCPs report in Nunavik that the location of end-of-life care is dependent by whether there are beds
available in Nunavik’s in-patient health centers, whether the patient can tolerate air transportation back to
their community, the potential medical complications of the patient and the family and community capacity
to deal with these, whether there is an established palliative care protocol insitu, and whether there are
enough family members and HCPs available in the community to provide palliative care (Hordyk et al.,
2017, p. 651).
5. Families were provided with the beds and other physical materials necessary to provide care (Hordyk et al.,
2017, p. 650).
Care transition

130
HCPs and “family members described how in certain communities; family-based caregiving practices were
declining (Hordyk et al., 2017, p. 650).
7. (1) some families who wanted to provide EOL care became overwhelmed by the daily expectations related
to care-time demands combined with lack of emotional reserves and physical
8. (2) The introduction of television and Internet resulted in reduced informal social interactions upon which
the collective approach to EOL care had been founded (Hordyk et al., 2017, p. 650).
9. (3) Knowledge concerning EOL care was not always successfully transmitted from one generation to the
next, leaving family members uncertain as to how to prepare for or to support the dying process (Hordyk et
al., 2017, p. 650).
10. (4) Intergenerational trauma rooted in colonial practices resulted in social suffering, which manifested
through substance abuse, suicide, accidental deaths, or child abuse and neglect (Hordyk et al., 2017, p.

6.

650).

11. (5) Increased formal employment opportunities with fixed hours and travel commitments meant that family
members could not always reorganize themselves to provide care as they had in the past (Hordyk et al.,
2017, p. 650).
12. HCPs report that usually a patient will attend a local health clinic where a nurse or physician “will conduct
an initial assessment” and then “if further evaluation or treatment is needed, they will be referred to their
coastal in-patient health center or if needed, to Montreal” (Hordyk et al., 2017, p. 651).
13. Researchers report that for palliative patients with complex treatment needs beyond what can be
accommodated in Nunavik “they are flown to acute and long-term care centers” in the south (Hordyk et al.,
2017, p. 651).
First Nation and Metis perspective
1. Community informants state that spiritual care is important to most families (Kelly et al., 2009).
2. Western religion played a significant role in the community in which they worked (Hotson et al., 2004, p.
33).
3. Community informants in SK report that preparing for death means to come together as a community to
support the dying person (Hampton et al., 2010).
4. Community informants in SK report that in preparing for death means there is a “need to gather
community” to support the dying person (Hampton et al., 2010, p. 9).
5. Researchers report that “each community expressed itself spiritually in different ways, many of the customs
are community-based and require the presence of all the patients’ friends and relatives” (Hotson et al.,
2004, p. 33).
6. Community informants in SK report that traditional end-of-life protocols were important, but differences
among people “and their unique needs at the end of life” needed to be respected (Hampton et al., 2010, p.
12)
7. Majority of community members in Northern Manitoba state that they would prefer to die in their home
community, even though they admit that medical care would be better in urban areas (Hotson et al., 2004).
8. Some community informants in Northern Manitoba felt that some people may not want to go to a large
center and may choose not to accept medical treatment from the local nursing station and that physicians
should accept this (Hotson et al., 2004).
9. Community informants in SK report that every person has unique needs at the end of life (Hampton et al.,
2010).
10. Family participants report that they were mostly “comfortable with the symptom control their family
members received and almost always had positive comments about the care” (Kelly et al., 2009, p. 395.e4).
11. Many Aboriginal people stated that they “do not believe in , or follow, traditional ways” (Hotson et al.,
2004, p. 33).
12. HCPs in Northern Manitoba acknowledge that Western religion had an influential role in the community
that they worked in (Hotson et al., 2004)
Cultural safety
13. Despite this demand, very few health care providers believed that patients currently tended to die at home
(Hotson et al., 2004, p. 31).
14. Most health care providers also felt that death from chronic illness has been progressively removed from
northern communities over the past few decades (Hotson et al., 2004, p. 31).

131
15. Researchers remark that in the provision of culturally safe care Hospitals and long-term residential care
units may provide more harm than benefit for Aboriginal Canadians considering the “colonial legacy of
institutional settings” (Castleden et al., 2010, p. 487).

Theme #2 EOL beliefs
Inuit perspective
Self-concept
1. Family members report that their loved ones “maintain a strong sense of independence throughout their
illness” (Galloway et al., 2020, p. 7).
Spirituality
1 6. Community informants “stated that pre-Christian grief and burial traditions were evidenced in
archeological sites, although were no longer present in communities” (Hordyk et al., 2017, p. 650).
17. Researchers report that “European missionary influences have had a significant impact on religious
practices and rituals” (Hordyk et al., 2017, p. 650).
Sense of place
2. Families state that “being on the land” is very important to them (Galloway et al., 2020, p. 8).
3. HCPs described the importance of community for Inuit patients and their families.
Cultural safety
4. Participants stated that when family members had not received adequate psychosocial care, the dying
process of loved ones aggravated these memories (Hordyk et al., 2017, p. 650).
5. HCPs remark on the importance of providing culturally sensitive palliative care to patients in Nunavik by
respecting their individual goals of care and wishes for end-of-life care (Vincent et al., 2019).
6. HCPs remark on the importance of providing culturally sensitive palliative care to patients in Nunavik by
not having “preconceived notions about Inuit culture or rituals” (Vincent et al., 2019, p. el66).
Location of care
7. Community members “tell stories of elders who died in the community without requiring medical
intervention and who refused treatment rather than be placed in a hospital center away from home”
(Hordyk et al., 2017, p. 650).
8. HCPs report that some patients receiving referral care choose to remain at home rather than go back ‘for
treatment in southern referral hospitals” (Galloway et al., 2020, p. 6)
Food
9. Families state that “traditional foods harvested from the land” are very important “to the well-being of both
patients and family members caring for their loved ones” (Galloway et al., 2020, p. 8).
Respect
10. Families report satisfaction with HCPs who “have served many years in the community” and were
therefore highly knowledgeable about the language, customs, families, and community ways” (Galloway et
al., 2020, p. 8).
First Nation and Metis perspective
Self-concept
1. Community informants in SK report that “care and comfort of the heart and spirit take precedence at the
end of life” (Hampton et al., 2010, p. 11).
2. Community informants in SK report that a “heart connection” is important in the relationship between HCP
and family members (Hampton et al., 2010, p. 11).
Traditional medicine, food, healers
3. Community informants in SK report that dying Aboriginal people can benefit from “both western
physicians and traditional Aboriginal healers” (Hampton et al., 2010, p. 11).
4. Community informants in SK report that it is “more spiritually and emotionally healing” to offering “foods
that bring comfort to the dying person than restrictive diets meant to prolong the life of that person”
(Hampton et al., 2010, p. 11).
5. Half of the HCPs believed that an Aboriginal patient would be able to access traditional medicines, healers,
and cultural ceremonies if they returned to their home communities (Hotson et al., 2004).
Location of care
6. Few HCP in the Northern Manitoba region believed that patients usually die at home (Hotson et al., 2004).

132
Most HCPs in Northern Manitoba believed that death from life limiting illness has been removed from
most northern communities (Hotson et al., 2004).
8. Some HCPs in the West Kootenay region believed that Aboriginal people left the region to die (Castleden
et al., 2010).
9. Many HCPs in the West Kootenay region felt that Aboriginal people mostly ‘take care of their own’ when
it came to end-of-life care (Castleden et al., 2010, p. 486).
10. HCPs felt that the ideal location for receiving palliative care should ultimately be determined by the
patient’s preference, either to die in the home or in an institutional setting and that this would be the best
care (Castleden et al., 2010).
11. Most HCPs believed that palliative care should occur in a home-like environment, like a freestanding
hospice house (Castleden et al., 2010).
Worldview
12. Community informants in SK state that the idea of completing the circle was culturally important to them
and that death did not signify the end-of-life but more the completion of the journey of life and that it
continued after death (Hampton et al., 2010).
13. Community informants in SK stated that in their traditional world view many people give energy to the
dying person and to their grieving family (Hampton et al., 2010).
14. Worldview perspective that many people from the family and community were needed to give the dying
person “energy” and the peace to make the journey to the spirit world without difficulties (Hampton et al.,
2010).
15. Community informants in SK state that their perspective is different from the western perspective, that
visitors to the dying should be limited so that the “dying person can conserve energy” (Hampton et al.,
2010, p. 10).
16. An HCP explained that life and death is experienced in a particular way attributable to cultural
phenomenon but was uncertain about what to make of this difference (Castleden et al., 2010).
17. HCPs with experience palliating Aboriginal patients felt that there were differences in how care and dying
were experienced do to differing worldviews (Castleden et al., 2010).
18. Most HCPs believed that there were traditional beliefs in the community about death, but few knew what
those beliefs were (Hotson et al., 2004).
19. Few HCPs were aware of traditional practices concerning death and dying in the community they worked
in (Hotson et al., 2004).
20. Community informants in SK state that many Aboriginal people “accept death as a natural part of life”, and
therefore some prepare their families for their loss and ask them “not to grieve too hard” (Hampton et al.,
2010, p. 10).
21. Community informants in SK state that the meaning of “don’t cry” is that the dying Aboriginal person
needs to be free to take the journey to the next world (Hampton et al., 2010).
22. Community informants in SK state that the meaning of “don’t cry is not to “prohibit the expression of
grief’ but more to facilitate the release of energy that their loved one needs to have to “take the journey to
the other side in peace”
23. Community informants in SK report that if a dying person is “concerned about the welfare of their loved
ones on this plane they held back from taking that journey” (Hampton et al., 2010, p. 10).
24. Researchers report that “some patients gave specific instructions to the family” (Kelly et al., 2009, p.
395.e4).
Spirituality
25. Researchers report that the language used by community informants in SK is a reflection “of their Christian
believe system”; however they also are knowledge keepers and “practice the traditional protocols of their
First Nation” (Hampton et al., 2010, p. 9
26. Researchers report that Aboriginal end-of-life practices “combines the Western practice of a wake and EOL
care” (Kelly et al., 2009, p. 395.e5).
27. HCPs reported that spirituality was different for each community and person (Hotson et al., 2004).
28. Community informants in SK stated that their traditional cultural beliefs that “life is a circle and spiritual
knowledge about the end of life is present from birth” (Hampton et al., 2010, p. 9).

7.

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29. Community informants in SK state “dying Aboriginal persons often know when they are about to take the
journey and the tell their loved ones about it” (Hampton et al., 2010, p. 10).
30. Researchers report that community informants in SK are elders in their communities and “hold sacred
information passed down through generations” (Hampton et al., 2010, p. 9).
31. Community informants in SK report that “the moment after an Aboriginal person passes from his or her
corporeal state is very sacred” (Hampton et al., 2010, p. 11).
32. Community informants in SK report that the spirit is “released at the moment of death, and the life force
continued on” for an Aboriginal person (Hampton et al., 2010, p. 1 1).
33. Community informants in SK report that the specific prayers of “traditional protocols (specific practices)
within each First Nation” are to help the dying person “to take the next step of their journey in peace”
(Hampton et al., 2010, p. 11).
34. Community informants in SK report that the specific prayers of “traditional protocols (specific practices)
within each First Nation” are to help the dying person “to take the next step of their journey in peace”
(Hampton et al., 2010, p. 11).
35. Community informants in SK state that there are cultural protocols for each First Nation community to
follow during bereavement (Hampton et al., 2010).
36. Community informants in SK report that praying, and singing are often synonymous at end-of-life (Kelly et
al., 2009
37. Community informants in SK report on the cultural importance of “finding and sharing a proper farewell
song” (Hampton et al., 2010, p. 12).
38. Community informants in SK report that this practice of a farewell song is no longer practiced (Hampton et
al., 2010).

Respect
39. Community informants stated that respect for a patient’s wishes was important in the patient/physician
relationship (Hotson et al., 2004).
HCP beliefs on Aboriginal palliative care
1 . HCPs in the West Kootenay region felt that cultural access was equal but that not all groups had interest in
using palliative care services (Castleden et al., 2010).
2. Some HCPs in the West Kootenay region believed that cultural differences were set aside and that patients
had equal access to palliative care services (Castleden et al., 2010)
3. Some HCPs in the West Kootenay region acknowledged that some marginalized populations have been
subject to unequal and discriminatory treatment (Castleden et al., 2010).
4. Some HCPs in the West Kootenay region felt that palliative care services were delivered on an individual
basis depending upon the family (Castleden et al., 2010).
5. More white, middle-income people use palliative care because it was more culturally accessible (Castleden
etal., 2010).
6. Most HCPs in the West Kootenay region mainly identified white people in institutionalized palliative care
settings (Castleden et al., 2010)
7. Many HCPs in the West Kootenay region felt that Aboriginal people were absent from formal palliative
care due to a lack of awareness of services, or due to exclusion from said services, or due to being cared for
in private home settings (Castleden et al., 2010).
8. HCPs report variable response to palliative care and some families found it very stressful while others did
not (Kelly et al., 2009).
9. HCPs in the West Kootenay region generalized about different cultural groups when discussing “cultural
needs in palliative care” (Castleden et al., 2010, p. 487).
10. HCPs in the West Kootenay region made generalizations and assumptions about Aboriginal people within
the context of palliative care (Castleden et al., 2010).
11. Some HCPs in the West Kootenay region generalized that all Aboriginal peoples smudge or bum
traditional medicines containing sweet grass, or sage as a cleansing spiritual practice (Castleden et al.,
2010).

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12. Some HCPs in the West Kootenay region generalized that most Aboriginal peoples do not practice
traditional spiritual practices (Castleden et al., 2010.
13. Some HCPs in the West Kootenay region relied upon appearance as an indicator of Aboriginal identity as
opposed to other indicators like cultural events and Aboriginal organizations (Castleden et al., 2010).
14. Researchers conclude that some HCPs in the West Kootenay region use stereotyping of physical
characteristics and appearance as a measure of Aboriginality (Castleden et al., 2010).
15. Some HCPs in the West Kootenay region acknowledges that they are not aware of the cultural needs of
Aboriginal people in the area (Castleden et al., 2010).
16. Researchers found that there is a need for better understanding of the wants and needs of cultural groups in
the West Kootenay region (Castleden et al., 2010).
17. Some HCPs in the West Kootenay region acknowledge a social trend of ‘coming out’ of Aboriginal
identity (Castleden et al., 2010
18. Researchers note that HCPs in the West Kootenay region reporting of more people identifying as
Aboriginal did not seem to translate into more Aboriginal people being seen in palliative care (Castleden et
al., 2010.
19. Many HCPs in the West Kootenay region felt the region had a mostly white population (Castleden et al.,
2010).
20. Some HCPs in the West Kootenay region felt that there were some Aboriginal people in the area to others
feeling that there were no Aboriginal people in the region (Castleden et al., 2010)
21. Researchers report that the local First Nation the Sinixt people have been officially declared extinct, but
they still exist and don’t consider themselves extinct (Castleden et al., 2010).
22. Researchers report that in the West Kootenay region statistics demonstrate the presence of Aboriginal
peoples in the area despite some HCPs assertions that there were none (Castleden et al., 2010).
23. Some HCPs in the West Kootenay region did not see the need for any training in cultural sensitivity
(Castleden et al., 2010).
HCP incongruence
24. Researchers found inconsistencies with the palliative HCP approach to care of patients with different
cultural backgrounds (Castleden et al., 2010).
25. Researcher report that due to incongruity of HCPs perceptions on Aboriginal palliative care and dying in
the West Kootenay region that much was unknown about how Aboriginal people received and perceived
these services (Castleden et al., 2010).
Theme #3 EOL preferences
Inuit perspective
1 . Family members state “that dying patients usually wish to die at home in their community” (Hordyk et al.,
2017, p. 649).
2. Patients expressed a preference for care to be provided by family members, (Galloway et al., 2020, p. 6)
3. family members in turn expressed a preference to be involved in the care of their loved ones (Galloway et
al., 2020, p. 6)
4. Family members may also work alongside of nurses and physicians to provide direct care (Hordyk et al.,
2017, p. 649).
5. Aboriginal family members identified that they valued experience in a physician (Kelly et al., 2009.
Location of care
6. Participants described a strong desire by patients to receive medical care at home or in their home
communities (Vincent et al., 2019, p. el 66).
7. Family members and healthcare providers reported that most persons wished to die in their home
communities, surrounded by families and friends (Hordyk et al., 2017, p. 650).
8. Family participants want more cancer screening and more diagnostic services offered closer to home
(Galloway et al., 2020).

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9.

Patient “preference for care services to be located in their home communities, whenever possible within
their own homes” (Galloway et al., 2020, p. 6).

10.
First Nation and Metis perspective
11. “Families expressed a need for flexibility in removal of the remains of their loved ones after passing”
(Kelly et al., 2009, p. 395.e5).
12. Family informants identified that often “personal, or family time” was needed at the passing of their loved
one and time was needed for “relatives traveling from the north to arrive” (Kelly et al., 2009, p. 395.e5).
Location of care
13. Community informants in Northern Manitoba identified patient decision-making factors to remain home to
include “an unwillingness to relocate self and family, fears of an unfamiliar environment, and the expressed
need to be near family and friends” (Hotson et al., 2004).
14. One community member in Northern Manito stated that only elderly patients would prefer to die in the
community, and younger patients might not accept palliative care as a care option (Hotson et al., 2004).
15. Researchers note that sharing tea in Northern Aboriginal contexts “is a part of common social discourse”
(Kelly et al., 2009, p. 395.e5).
HCPs perspective
16. For those who required medical intervention, had been hospitalized, and wished to receive care or die at
home, wishes were accommodated where possible (Hordyk et al., 2017, p. 650).
17. HCP report that persons where not repatriated to home communities when they had deteriorated to such a
degree that a return home was not feasible, or when there was not “adequate family and community care in
place” (Hordyk et al., 2017, p. 650).
1 8. Arrangements were made by home care social workers, nurse, and physicians for dying patients to return
home with an explicit palliative care protocol (Hordyk et al., 2017, p. 650).

Theme #4 EOL communication
Inuit perspective
1. Researchers found that “Communication challenges also impacted how care unfolded (Hordyk et al., 2017,
p. 651).
2. Family members report “multiple instances where news about a family member’s diagnosis or treatment
was conveyed to them back home over the telephone” (Galloway et al., 2020, p. 7).
3. Family members expressed frustration over staff use of medical jargon in southern hospitals (Galloway et
al., 2020, p. 7).
4. Researchers found that “licensed healthcare providers whose primary language is French, although many
speak some English” (Hordyk et al., 2017, p. 650).
Trust
5. In light of the sociocultural and historical context in which institutional care is provided in Nunavik, and
the minimal cultural training offered to healthcare providers, it is not surprising that trust emerged as
central in our findings (Hordyk et al., 2017, p. 65 1).
6. Prior trust relationships with family members were key to success in EOL care decision making (Hordyk et
al., 2017, p. 652).
7. Participants stated consequently, errors in communication were made, often unintentional and
unrecognized, which potentially led to breakdown in trust” (Hordyk et al., 2017, p. 652).
8. This mistrust surfaced in several conversations with family members for whom the physician’s intent
concerning the prescribing of morphine had come into question; the physician’s choice to prescribe
morphine at the EOL was interpreted as hastening—if not actually causing—the death of the patients
(Hordyk et al., 2017, p. 652).
9. Examples of Qallunaat social workers arriving uninvited to the home of a grieving family, of an interpreter
required to work when a family member had died, of country food not permitted in health center premises,
of community members not given space to wash the body of the deceased or, these and other breakdowns
in communication were described as avoidable with adequate training (Hordyk et al., 2017, p. 652).

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10. Patients and family members described the importance of health-care providers giving accurate information
to family members about their loved one’s diagnosis and care (Galloway et al., 2020, p. 7).
11. These accounts contrasted with successful experiences with family meetings concerning EOL care; for
example, by physicians who had worked with the same patient over several months, by spiritual care
advisors whose role consisted of building trust, and by home care providers who saw their patients over
time (Hordyk et al., 2017, p. 652).
Translator services
12. Family members frequently described being in the difficult situation of serving as a translator for a family
member receiving difficult or complicated information about diagnosis or treatment (Galloway et al., 2020,
P-7).
13. Many patients and family members emphasised the importance of reliable translation services for effective
health-care delivery (Galloway et al., 2020, p. 7).
14. Family members expressed concern that on occasion southern health-care providers may rely on
unqualified translators (Galloway et al., 2020, p. 7).
15. “Interpreters stated that this additional “informal” expectation could be fatiguing as they were regularly
intervening to avert potential errors, which could have significant effects on patient-provider relationships”
(Hordyk et al., 2017, p. 651).
Cultural communication
16. Researchers report that culture “played a role in family communication and decision making” (Kelly et al.,
2009, p. 395.e4).
17. Family members report “that care providers mistook failure to request pain medication, or to rate pain
highly, as absence of severe pain” (Galloway et al., 2020, p. 7).
18. One family member reported “examples of Inuit forms of non-verbal communication that might not be
properly interpreted by caregivers who lack awareness of local dialect or gestures (Galloway et al., 2020, p.
8).
19. Some Inuit participants describe when health service providers failed to listen or respond appropriately to
patients’ descriptions of symptoms, resulting in negative outcomes for patients (Galloway et al., 2020, p.
6).
First Nation and Metis perspective
20. Aboriginal family members identified “the need for physicians to communicate directly” and respectfully
with families “and take the time” to talk with the family (Kelly et al., 2009, p. 395.e3).
21. Aboriginal family members identified that they wanted words of encouragement in communication with
families (Kelly et al., 2009).
22. Aboriginal family members identified that “they did not want false hope’ in physician to family
communication (Kelly et al., 2009, p. 395.e3).
Translator services
23. Aboriginal family members expressed “concern when interpreters were not available” (Kelly et al., 2009, p.
395.e4).

HCPs perspective
24. New nurses were inexperienced with cultural communication models and local daily traditions and needed
to learn them by trial and error from their mistakes (Hordyk et al., 2017).
25. HCPs report “a reluctance or conscious decision by patients and families to not discuss goals of care or
end-of-life care planning” (Vincent et al., 2019, p. el 66).
26. Researchers report that “ for other families not speaking of illnesses was the tradition” (Kelly et al., 2009,
p. 395.e4).
27. Researchers report difficulties in getting answers to advance care planning survey questions (Kelly et al.,
2009.
28. HCPs in Nunavik describe multiple issues with supporting patients and their families with goals of care
treatment decisions in life-limiting illnesses (Vincent et al., 2019).
Cultural communication
29. Many HCPs acknowledged the important “role of family and extended family in Inuit culture” for decision
making and end-of-life support (Vincent et al., 2019, p. e!66).

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30. HCPs in the West Kootenay region felt that a lack of formal Aboriginal cultural training could lead to
cultural misunderstandings that effect palliative care delivery (Castleden et al., 2010).
Example of cultural miscommunication
31. Hordyk et al., 2017 report on the example of a newly arrived HCP who advised the family that the removal
of life support was in the best interest of the patient, but the family perceived it as being in the physician’s
best interest (Hordyk et al., 2017).
Example of culturally appropriate care
32. A nurse, with previous Indigenous community experience, felt finally welcome in the homes of patients,
once she waited until families were ready to receive her, and was active in the community advocating for
more services , and her visible hard work resulted in public acts of appreciation by families (Hordyk et al.,
2017).
Translator services
33. HCPs in Nunavik describe the important role of Inuit interpreters in the multidisciplinary palliative care
team (Vincent et al., 2019).
34. HCPs also reported “that Inuit medical interpreters were often uncomfortable discussing advance care
planning, including recommendations against cardiopulmonary resuscitation and end-of-life care planning
(Vincent et al., 2019, p. el67).
35. HCPs reported that “Interpreter services were needed for the affectively laden and informationally loaded
EOL care conversations with Inuit patients and families” (Hordyk et al., 2017, p. 651).

Theme #5 EOL capacity
Inuit perspective
Community palliative care capacity
1 . Community informants in Nunavik report that at end-of-life responsibilities are shared amongst family
members, faith-based organizations and community members close to the patient or family for “food
preparation, housecleaning, mortician services and funeral preparations” family (Hordyk et al., 2017, p.
649).

2. Community informants in Nunavik report that at end-of-life community hunters supply food (Hordyk et
al., 2017).

3.

Community informants in Nunavik report that at end-of-life and the local Co-op and other community
stores supply food and food baskets “during and after the death of a family member” (Hordyk et al., 2017,
p.650).
Health system palliative care capacity
1. Researchers report that in Nunavik there are two in-patient centers with two palliative care beds, but often
additional beds are needed for palliative care (Hordyk et al., 2017).
2. Researchers in Nunavik report that due to chronic bed shortages in Montreal often patients are repatriated
to their local in-patient centers which are often overcrowded (Hordyk et al., 2017, p. 651).
3. Researchers report on the role of liaison nurses, pivot nurses, interpreters, and social workers as navigators
for Inuit in the healthcare system in southern referral centers (Hordyk et al., 2017).
1 . Increasing comorbidities requiring more complex care, are increasing the time and care burden (Hordyk et
al., 2017).
2. Nursing heavy burden of physical and emotional care with patients and families (Hordyk et al., 2017).
3. Nurses often feel pushed to their limits with the provision of physical and emotional care (Hordyk et al.,
2017).
4. Extra nurses were flown into communities when personnel resources were already overextended or when
home care nurses were not on site (Hordyk et al., 2017, p. 650).
First Nation and Metis perspective
Community palliative care capacity
1 . Community informants in Northern Manitoba report the roles of community and family members include
personal support (emotional support), partners in prayer (spiritual support), homemaking services, cooking
and food preparation services, personal care with grooming and feeding (Hotson et al., 2004).

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2. Community informants in Northern Manitoba report the roles of the physicians and nurses is patient
physical pain control and home visits (Hotson et al., 2004).
3. Community informants in Northern Manitoba report that financial assistance was the role of the Band
Council (Hotson et al., 2004).
Community informants in Northern Manitoba state that the supplies necessary to provide palliative care at
home include “a hospital bed, a wheelchair, a ramp, running water, a commode, a fan, or air conditioning, a
washer/dryer, adequate heating, and the services of a homemaker” (Hotson et al., 2004, p. 34).
Human resource limitations
4. HCPs make do with whatever existing resources they had available in order to accommodate Aboriginal
peoples (Castleden et al., 2010).
5. Historically limited home care programs on reserves in Northern Manitoba (Hotson et al., 2004).
Winnipeg Palliative care specialists identified historical jurisdictional and limited resources issues (Hotson
et al., 2004).
5. HCPs in Norther Manitoba felt that conflicts occur between the wishes of patients and their family
members mainly due to care-giver burnout (Hotson et al., 2004).

4.

Theme #6 Resource and Policy Limitations
Inuit perspective
5. EOL care planning is set into motion if the treating physician declares there are no interventions to reduce
or halt the imminent and terminal progression of the illness, or if the patient refuses medical interventions
(e.g., a patient who chooses to return to their community rather than seek cancer treatments or kidney
dialysis) (Hordyk et al., 2017, p. 651).
First Nation and Metis perspective
Policy limitation
6. clear policies do not exist with regards to palliative care Northern Manitoba (Hotson et al., 2004)
7. Winnipeg palliative care facilities initiate discharge planning but historically have not had repatriation
policies to return patients to their home communities (Hotson et al., 2004).
8. Historically (FNIHB) mission statement has not been interpreted to include palliative care (Hotson et al.,
2004).

9. Historically FNIHB palliative care has not been included Northern Manitoba (Hotson et al., 2004).
10. Health authority developed palliative care programs (specialty) (Hotson et al., 2004).
1 1. Community informants in SK report that “many elders have experienced disrespectful and racist treatment
by health care providers” (Hampton et al., 2010, p. 10).
12. Community members state that they and their families have experienced difficulties with policy restrictions
when trying to gather around and visit community members dying in hospital (Hampton et al., 2010, p. 9).
13. Community members take issue with hospital policies that restrict the diet of dying individuals in order to
attempt to prolong their life (Hampton et al., 2010).
14. Community members in SK felt restricted when trying to practice spiritual traditions and cultural rituals
like smudging (Hampton et al., 2010).
Resource issues
Inuit perspective
Palliative medical travel
5. Family members report medical “travel for diagnosis and treatment” out of the territory often with “lengthy
stays for patients” and their family members in southern referral hospitals” (Galloway et al., 2020, p. 6).
6. Families report that medical travel-imposed burdens upon them through “childcare, missing paid work,
time away from family, and the financial costs of travel” with only some of it reimbursed through health
insurance benefits (Galloway et al., 2020, p. 6).
7. Families report that patients are often rotated between home, territory in-patient hospitals and southern
referral centers (Hordyk et al., 2017).
Education/training
6. HCPs had variety of previous training and education in palliative care with no on the job formal palliative
education and training and no formal Inuit culture or end-of-life training (Vincent et al., 2019.

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HCPs are provided with only two days of formal training in Inuit culture and life in an Arctic context
(Hordyk et al., 2017).
8. Training provided idealized Nunavik and the Inuit which was different from the actual social conditions
encountered by HCPs (Hordyk et al., 2017).
9. Formal onsite training concentrated upon the provision of acute medical care (Hordyk et al., 2017).
10. HCPs are mostly non-Inuit from urban southern centers (Hordyk et al., 2017).
1 1. Irrespective of the time spent in the North, HCPs felt that they were “outsiders” (Hordyk et al., 2017, p.

7.

651).

12. Many HCPs felt unprepared for the cultural and social realities of working with the Inuit in Nunavik
(Hordyk et al., 2017).
13. Nursing has high staff turnover rates and chronic understaffing which effect patient care (Hordyk et al.,
2017).
14. Many nurses in Nunavik remain for one or two years or less, contributing to the high staff turnover rate
(Hordyk et al., 2017).
15. Limited availability of Inuktitut interpreters not available at the QGH in Iqaluit, HCPs rely on other HCPs
and most often patients’ family members (Vincent et al., 2019.
16. Nurses acknowledge that due to a lack of mental health services, and informal, and formal family supports,
they were expected to respond to emotional suffering (Hordyk et al., 2017).
First Nation and Metis perspective
Resource limitations
17. Limited resources restrict provision of palliative care and is a concern of most remote Northern
communities (Vincent et al., 2019).
Theme #9 EOL recommendations

Inuit perspective
1 . Participants agreed that both Inuit and Qallunaat had the combined expertise, knowledge, and resources
necessary to develop a program attentive to the increasing numbers of patients requiring EOL care (Hordyk
et al., 2017, p. 652).
2. Participants suggested care could be improved if caregivers asked families about traditional Inuit ways of
coping with illness and dying in the community (Galloway et al., 2020, p. 8).
3. Ideas for quality improvement included the need for better continuity of care by health care providers for
palliative care patients in remote communities (Vincent et al., 2019, pp. el 67- 1 68).
4. Respite services were singled out as needed for families, and it was suggested they could be provided
through collaborative efforts of municipalities and health centers (Hordyk et al., 2017, p. 652).
5. Key also were resources allocated for communities to provide culturally informed psychosocial and
bereavement supports to their members, many of whom were suffering under the weight of unresolved
grief related to histories of traumatic experience in their families (Hordyk et al., 2017, p. 652).
Education/training
6. In family contexts, recommendations centered on education concerning disease progression, care
provision, and the dying process (Hordyk et al., 2017, p. 652).
7. In terms of institutional care, emphasis was placed on palliative care training (including psychosocial
support), facilities, increased staff, and specialized training for interpreters (Hordyk et al., 2017, p. 652).
8. HCPs in Nunavik recommendations to improve Inuit palliative care include standardized palliative care
guidelines, formal palliative care training for providers, and greater cultural end-of-life training for
providers (Vincent et al., 2019).
9. HCPs in Nunavik recommend greater access to specialist palliative care practitioners who are familiar with
local community palliative care programs and resources as a means of supporting HCPs (Vincent et al.,
2019).
10. HCPs in Nunavik identified the need for education of Inuit interpreters in the palliative care ethos, goals of
care and advance care planning conversations (Vincent et al., 2019).
11. HCPs in Nunavik believe that the palliative multidisciplinary team could benefit with more training and
education in goals of care discussions, advance care planning, palliative approach to care, and cultural
sensitivity training in Inuit sociocultural background (Vincent et al., 2019).

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First Nation and Metis perspective
12. Community informants in SK state that HCP should show “feeling and compassion” at end-of-life and they
should “bring in Aboriginal elders or ministers to assist families” (Hampton et al., 2010, p. 11).
13. Community informants in SK state that non-Aboriginal HCPs should “ask for assistance from traditional
Aboriginal healers” and “if they do not know where to go for this, they should ask for assistance”
(Hampton et al., 2010, p. 11).
Education/training
14. Community informants in SK state that “HCPs need education to work effectively with Aboriginal persons
who are dying” (Hampton et al., 2010, p. 10).
Policy
15. Community informants in SK state that hospitals can offer support to the dying Aboriginal person by
allowing “family members to bring in traditional food that will give comforts to the dying person”
(Hampton et al., 2010, p. 11).
16. Researchers report that a solution to hospital policy restrictions with Aboriginal visitors is “to provide
family with rooms than can accommodate large numbers of extended family” (Hampton et al., 2010, p. 9).
17. Researchers report that since Aboriginal palliative care involves extended family and community members
the physical space for palliation needs to comfortably accommodate large groups of people groups (Kelly et
al., 2009).
18. HCPs and community members both believe that providers and community members would be willing to
participate in more palliative care in Northern Manitoba (Hotson et al., 2004).
19. Some HCPs in the West Kootenay region recommended (re)connect dying Aboriginal peoples with their
homelands as a means of improving Aboriginal Palliative care in the region (Castleden et al., 2010).
20. Some HCPs in the West Kootenay region recommended giving Aboriginal people soil from their home
territory as a symbolic (re)connection with home territory (Castleden et al., 2010).
21. Researchers note that culturally sensitive care requires dedicated resources as an element of Aboriginal
palliative care improvement (Castleden et al., 2010).
22. HCPs in Northern Manitoba felt that introducing standard medical management protocols would help
facilitate Aboriginal palliative care in northern contexts (Hotson et al., 2004).
23. HCPs in Northern Manitoba felt that closer connection to Cancer Care Manitoba and other palliative
organizations would facilitate improved palliative care for Aboriginal populations (Hotson et al., 2004).
24. HCP identified important elements for Aboriginal palliative care in the West Kootenay region include
physical location near natural settings, policy change to allow Aboriginal people to practice ceremonial
activities while receiving palliative care and facilitated access to traditional foods and medicine (Castleden
et al., 2010).
25. HCPs in Nunavik recommended that to improve upon the quality of palliative care services efforts should
be directed at building upon existing palliative community programs and capacities (Vincent et al., 2019).
Education/training
26. HCPs in the West Kootenay region frequently expressed a need for more training to provide culturally
competent palliative care (Castleden et al., 2010).

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Appendix 3
Search filters for subject, population, geographical context, and topic
Set 1 : Topic or Subject qualifier— Title
Palliative or palliation or end of life or terminal or hospice or dying or “life limiting”
Set 2: Population qualifier—Abstract, text
Indigenous or Aboriginal or native or Indian or Amerindian or Inuit or Eskimo or Metis or Esquimau or "Premiere
Nation" or "First Nation" or "First Nations" or “First People” or “First peoples” or Autochtone* or Athapaskan or
Saulteaux or Wakashan or Salish or Cree or Dene or Gwitchin or Blackfoot or Anishinaabe or Assiniboine or
Chippewas or Algonquin or Algonquian or Mohawk or Ojibwa or Cayuga or Montagnais or Maliseet or Naskapi or
Micmac or Beothuk or Inuvialuktun or Inuvialuit or Innu or transcultural or Shamanism or shaman or “traditional
healer” or “traditional medicine” or “medicine man” or “medicine woman”
Set 3: Geography Qualifier— Abstract
Canada or “British Columbia” or “Columbie Britannique” or Alberta or Saskatchewan or Manitoba or Ontario or
Quebec or “New Brunswick” or “Nouveau Brunswick” or “Nova Scotia” or “Nouvelle Ecosse” or Newfoundland or
Labrador or “Northwest Territories” or “Yukon Territory” or Yukon or Nunavut
Set 4:—Text
worldview or paradigm or perception or values or beliefs or experience* or “culture perspectives” or “cultural
perception” or “preferences on palliative care” or “indigenous perspective” or “aboriginal perspective” or “First
Nation perspective” or “First people* perspective” or “Indigenous assumptions” or “aboriginal assumptions” or
“western perspectives” or “western assumptions” or cultur* N2 (perspective or view or perception or preference*or
assumption*) or (Indigenous or aboriginal or First Nation* or First people*) N2 (world* or perspective* or view or
perception or preference* or assumption*) or “ways of knowing”
Set 5: All Canadian Nation names
Duneza or Dunne-za or Dakelh or Babine or Wet'suwet'en or Haida or Sto:lo or Staulo or Stahlo or Fraser River
Indians or Coast Salish or Kaska or Ktunaxa or Kootenay or Kwakwaka'wakw or Gitxsan or Gwich'in or Gwitich'in
or Gitksan or Gwitchin or Gwichin or Kutchin or Tsimshian or Musqueam or St'at'imc or In-SHUCK-ch or Lil'wat
or Lillooet or Nisga'a or Nuu-chah-nulth or Nootka or Nuxalk or Sekani or Wuikinuxv or Secwepemc or Sinixt or
Skwxwu7mesh or Tagish or Tahitan or Tahltan or Haisla or Nicola or Kitimat or Beaver or Okanagan or Sechelth
or Carrier or Tsilhqot'in or Cowichan or Chilcotin or Nlaka'pamux or Tlingit or Tsetsaut or Oweekeno or Kwakiutl
or Heiltsuk or Bella Bella or Saulteaux or Bella Coola or Shuswap or Squamish or Stl'atl'imx or Stl'atl'imc or
Stlatliumh or Slatemuk or Dane-zaa or Tsattine or Tutchone or Tuchone or Akisq'nuk or Esdilagh or Acho Dene
Koe or Dene-tha or Adams Lake or Ahousaht or Aitchelitz or Beecher Bay or Blueberry River or Tsleil-Waututh or
Burrard or Cacli'p or Canim Lake or Canoe Creek or Dog Creek or Cheam or Chawathil or Aishihi or Chehalis or
Chemainus or Cheslatta or Comox or Da'naxda'xw or Ditidaht or Doig River or Dzawada'enuxw or Ehattesaht or
Esketemc or Esquimalt or Gitanmaax or Gitanyow or Gitsegukla or Gitwangak or Gitxaala or Glen Vowell or
Gwa'sala or Gwawaenuk or Hagwilget or Halalt or Halq'emeylem or Hesquiaht or Homalco or Hupacasath or
Hul'quimi'num or Ka:'yu:'k'fh or Che'k'tles7et'h or Katzie or Kispiox or Kitselas or Kitsumlamun or Klahoos or
Kluskus or Lhoosk'uz or K'omoks or Kwadacha or Kwaw-kwaw-a-pilt or Kwiakah or Kwicksutaineuk or
Kwikwentlem or Lakahahmen or Lax-kw'alaams or Leq'a:mel or Lheidli-T'enneh or Lhatko or Lyackson or Malahat
or Mamalilikulla or Matsqui or Metalakatla or Moricetown or Mowachaht or Muchalaht or Musqueam or Nadleh or
Nak'azdli or 'Namgis or Sununeymuxw or Nanoos or Nazko or Nee-Tahi-Buhn or Neskonlith or Nisga'a or Nisgaa
or Nooaitch or N'quatqua or Nuxalk or Ostlq'emeylem or Pacheedath or Pauquachin or Penelakut or Qayqayt or
Quatsino or Saik'uz or Samahquam or Scowlitz or Semiahmoo or Shackan or Shxwha:y or Shw'ow'hamel or
Simpcw or Siska or Skatin or Skawahlook or Skin Tyee or Skowkale or Skuppah or Skwah or Sliammon or
Soowahilie or Spallumcheen or Squiala or Stellat'en or Taku River or T'it'qet or Tla-o-qui-aht or Tlatlasikwala or
Tl'azt'en or Tl'etinqox-t'in or Tlowitsis or Toosey or Toquaht or Tsartlip or Tsawataineuk or Tsawout or Tsay Keh
Dene or Tseshaht or Tseycum or Tsi Del Del or Ts'kw'aylaxw or Tsleil-Waututh or T'souke or Tzeachten or
Uchcklesaht or Ulkatcho or We Wai Kai or Cape Mudge or Wuikinuxv or Xaxli'p or Yaakweakwioose or Yekooche
or Aakom Kiyii or “Alexis Cardinal River” or “Alexis Elk River” or “Alexis Nakota Sioux” or “Allison Bay” or
“Assineau River” or Atikameg or “Athabasca Chipweyan” or “Beaver First Nation” or “Beaver Lake Cree” or

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Bearspaw or “Beaver Ranch” or “Bigstone Cree” or “Bistcho Lake” or “Blood Tribe” or “Cadotte Lake” or
“Carajou Settlement” or Chateh or Chiniki or “Chipewyan Prairie” or “Cold Lake First Nations” or “Dene Tha” or
“Desmarais Settlement” or “Dog Head” or Driftpile or “East Prairie” or “Elizabeth Settlement” or Enilda or Enoch
Cree or “Duncans First Nation” or Ermineskin or “Fort Chipewyan” or “Frog Lake” or “Garden Creek” or
“Goodfish Lake” or “Gregoire Lake” or Grouard or Heart Lake or Hobbema or Hokedhe or Horse Lake or Janvier
Health or Jere Ghalil or “Jean Dor” or “John Dor” or Kainai or Kainaa or Kapaweno or “Kee Tas Kee Now” or
Kehewin or “Ki Tue” or Kapaweno or Kikino or Kinuso or “Jackfish Point” or “Little Buffalo” or “Little Red River
Cree” or “Loon Prairie” or “Louis Bull” or “Lubicon Lake Indian Nation” or “Maggie Willier” or Makaoo or
Maskwacis or “Meander Health” or Mikisew or Nakota or Nakoda or “Namur Lake” or OChiese or “Old Fort” or
“Paddle Prairie” or “Paul Band” or “Paul First Nation” or “Peace Point” or “Peavine Settlement” or Peigan or
“Peerless Lake” or “Peerless Trout” or Piikani or Pikuni or Pikani or Puskiakiwenin or “Red Earth Creek” or
“Saddle Lake” or “Samson Cree” or Sarcee or “Sawridge Band” or Siksika or Siksikawa or Sao-kitapiiksi or
“Stoney First Nation” or “Stoney Tribe” or “St Isadora” or “Sturgeon Lake Cree” or Tasttine or Tallcree or “Tall
Cree” or Thabacha or Thebathi or “Tsuu Tina” or “Tsu Tue” or “Tsu Kadhe” or Unipouheos or Utikoomak or
Wabasca or “Wesley Band” or ahtahkakoop or Asimakaniseekan or “Amisk Lake First Nation” or “Assiniboine
First Nation” or Beardy or “Big River First Nation” or “Birch Portage” or “Bittern Lake” or “Budd's Point” or
Mamawetan or “Carry the Kettle” or “Canoe Lake” or “Carrot River” or “Chicken First Nation” or “Kelsey Trail
Health” or “Sunrise Health” or “Prince Albert Parkland Health” or “Day Star” or “Dipper Rapids” or “Eagles Lake
First Nation” or “Elak Dase” or “English River First Nation” or “Prairie North Health” or “Fishing Lake First
Nation” or “Flying Dust First Nation” or “Fond du Lac” or “Four Portages” or “Fox Point First Nation” or
“Athabasca Health Authority” or “Gordon First Nation” or “Grandmother's Bay” or “Hatchet Lake” or “Hay First
Nation” or “Ils a la Crosse” or “James Smith First Nation” or “Joseph Bighead” or Kawacatoose or Kahkewistahaw
or “Key First Nation” or Kinistin or Kinookimaw or Kitsakie or “Knee Lake First Nation” or “La Loche First
Nation” or “La Plonge” or “Lac La Hache” or “Lac La Ronge” or “Little Black Bear” or “Little Bone First Nation”
or “Little Hills First Nation” or “Little Pine First Nation” or “Little Red River” or “Lucky Man” or Makaoo or
Makaw or “Meadow Lake First Nation” or Ministikwan or Minoahchak or “Mirond Lake” or Mistawasis or
“Montreal Lake First Nation” or “Moosomin First Nation” or “Morin Lake” or “Mosquito-Grizzley Bear's” or
Muscowpetung or “Muskeg Lake First Nation” or “Muskeg River First Nation” or Muskoday or Muskowekwan or
Nekaneet or “New Thunderchild” or “Cypress Health” or “Ocean Man” or Ochapowace or Okanese or Okemasis or
“Old Fort First Nation” or “One Arrow” or “Onion Lake” or Opawakoscikan or Pasqua or Peepeekisis or “Pelican
Lake First Nation” or “Pelican Narrows First Nation* or “Peter Ballantyne” or “Peter Pond First Nation” or
“Pheasant Rump” or Piapot or “Potato River” or “Poundmaker First Nation” or “Primeau Lake First Nation” or
“Red Earth First Nation” or “Red Pheasant” or Sakimay or Seekaskootch or Shesheep or “Standing Buffalo” or
Starblanket or “Tumor Lake” or Wahpeton or Wapachewanak or Wa-Pii or Moos-Toosis or Waterhen or “Willow
Bunch” or Witchekan or “Wood Mountain” or Yellowquill or “Yellow Quill” or Opaskawayak or “Little
Saskatchewan” or “Fisher River Cree” or Peguis or Sagkeeng or “Roseau River” or “Norway House” or
Sapotaweyak or “Wuskwi Siphik” or Skownan or “Dauphin River” or Pinaymootang or Kinonjeoshtegon or O-ChiChak-Ko-Sipi or Tootinaowaziibeeng or “Lake Manitoba” or Keeseekoowenin or Waywayseecappo or Birdtail
Sioux or Canupawakpa or “Dakota Tipi” or “Brokenhead Ojibway” or “Northlands Nursing Station” or “Lac
Brochet” or “Sayisi Cree” or “Tadoule Lake” or Brochet or O-Pipon-Na-Piwin or “South Indian Lake” or “Mathias
Colomb” or Pukatawagan or Tataskweyak or “York Landing” or Nisichawayasihk or “Nelson House” or
Shamattawa or Bunibonibec or “Manto Sipi” or “God's River” or “God's Lake” or “Red Sucker Lake” or “St
Theresa Poin”t or Wasagamack or Pauingassi or “Berens River Bloodvein” or “Sandy Bay” or “Long Plan” or
“Sioux Valley” or “Fox Lake” or “War Lake” or “Pine Creek” or “Lake St Martin” or “Hollow Water” or “Little
Black River” or “Rolling River” or “Dakota Plains” or “Swan Lake” or “Oxford House” or “Cross Lake” or “Split
Lake” or “Barren Lands” or “Garden Hill” or “Poplar River” or “Little Grand Rapids” or Aamjiwnaang or
Pikwakanagan or Animbiigoo or Zaagi?igan or Anishinaabek or “Wauzhushk Onigum” or Naongashiing or
Anishnabekwe or Anishnawbe or "ARMSTRONG SETTLEMENT" or Aroland or ASSABASKA or
"Atikameksheng Anishnawbek" or Attawapiskat or "Aundeck-Omni-Kaning" or Batchewana or "Bearfoot
Onondaga" or "Biinjitiwabik Zaaging" or Bimose or "Bingwi Neyaashi" or Bkejwanong or "chapleau cree" ordokis
or Eabametoong or "Fox Lake Cree" or Ginoogaming or "Kasabonika Lake" or Kashechewan or
KABAPIKOTAWANGAG or Keewaytinook or Kee?Way?Win or "Kiashke Zaaging" or Kitchenuhmaykoosib or
Konadaha Seneca or Koocheching or Magnetawan or Matachewan or Mattagami or "MacDowell Lake" or
M?Chigeeng or Mishkeegogamang or Missanabie or Mitaanjigaming or Stanjikoming or Mocreebec or Mohawks or
Akwesasne or Gibson or "Moose Cree" or Naicatchewenin or Namaygoosisagagun or Naotkamegwanning or
Neskantaga or Nibinamik or Nigigoonsiminikaaning or Nipissing or OBADJIWAN or Obashkaandagaang or

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"Washagamis Bay" or Ochiichagwe Bibigo?ining or Onigaming or Parmachene or Sabaskong or Sagamok or
“Oneida Nation” or Shawanaga or Sheguiandah or Sheshegwaning or “Taykwa Tagamou” or Temagami or
Wabaseemoong or Wabauskang or "Wabigoon Lake" or Wahgoshig or Wahnapitae or "Wahta Mohawks" or
Wapekeka or Wasauksing or “Wauzhushk Onigum” or Wawakepewin or Webequie or Weenusk or Wikwemikong
or Ardoch or Algonquin or Beausoleil or "big grassy" or "Iskatewizaagegan 39 Independent" or beaverhouse or
"brunswick house" or "buffalo point" or caldwell or "cat lake" or Couchiching or "Curve Lake" or "deer lake" or
delaware or "duck lake" or "Eagle Lake" or Thames or "Fort William" or "Garden River" or "Grassy Narrows" or
Hiawatha or “Henvey Inlet” or Homepayne or "Gull Bay" or "King Fisher" or “Lac Mille” or “Lac Croix” or "Long
Lake" or Magnetawan or "Marten Falls" or "Martin Falls" or Mississauga or "New Credit" or "Moose Deer Point" or
Munsee?Delaware or "Muskrat Dam" or "North Caribou Lake" or "North Spirit Lake" or “Northwest Angle” or
“Sioux Narrows” or “Pays Plat” or “Pic Mobert” or "Red Rock" or "Sachigo Lake" or "Sandy Lake" or "Savant
Lake" or Saugeen or “Seine River” or “Serpent River” or "Shoal Lake" or “Stony Point” or “Stoney Point” or
"Grand River Territory" or "Slate Falls" or “Whitefish River” or Whitesand or "Whitewater Lake" or "Wunnumin
Lake" or Abenaki or Abenakis or Abitibiwinni or Akwesasne or Atikamek or "Barriere Lake" or Betsiamite or
Cacouna or Chisasibi or Coucoucache or "Eagle Village" or Eastmain or Essipit* or Ekuanitshit* or Gespeg or
Gesgapegiag or Huron-Wendat or "Huronne Wendat" or Essipit or Inuk or Kahnawake or Kahnawa?ke or
Kanesatake or Kawawachikamach* or Kebaowek or Kipawa or Kitcisakik or “Kitigan Zibi” or "Lac Romanic" or
"Lac John" or "Lac Simon" or Listuguj or "Long Point First" or Maliotenam or Maliseet or Malecite or Mamit
Innuat or Mamuitun or Manawan or Mashteuiatsh or Matimekush or Matimekosh or Mawiomi or Migmaw or “Mig
Maw” or Mi?gmawei or Mingan or Mistissini or Montagnais or Naskapi or Natashquan or Nemiscau or Nemaska or
Obedjiwan or Odanak or Opitciwa or dopitciwa or Ouje?Bougoumou or Pakuashipi or Pessamit or Pikogan or
"Rapid Lake" or Schefferville or Sept-Iles or Takuaikan or "Uashat Mak" or "Mani-Utenam" or Temiscaming or
Timiskaming or Ungava or Uashat or "Unamen Shipu" or Waban-Aki or Waskaganish or Waswanipi or Wemindji
or Wemotaci or Wendat or Wendake or Whapmagoostui or Wolinak or Kitcisakik or "Pakua Shipu" or "Pakua
Shipi" or Winneway or “Big Hole Tract” or Metepenagiag or “Eel Ground First Nation” or Buctouche or
Esgenoopetitj or “Burnt Church” or “Devon Reserve” or “St Mary's First Nation” or “Eel River Reserve” or “Eel
River Bar” or “Fort Folly Indian Point Reserve” or “Indian Island First Nation” or “Indian Ranch Reserve” or
Kingsclear or “St John River Valley Tribal Council” or Oromocto or Pabineau or Pokemouche or Mawiw or “Red
Bank Reserve” or Richibucto or “St Basile” or Madawaska or Soegao or Tabusintac or Tobique or Wolastoqiyik or
“Woodstock First Nation” or “Pictou Landing” or “Bear River” or “Boat Harbour” or “Annapolis Royal” or
Antigonish or Baddeck or Cheticamp or “Cape Bretan” or “Neil's Harbour” or “Glace Bay” or Tatmagouche or
“Sheet Harbour” or “Cambridge Reserve” or “Annapolis Valley First Nation” or “Chapel Island First Nation” or
“Cole Harbour” or Eskasoni or “Fisher's Grant” or “Franklin Manor” or Paq'tnkek or Glooscap or “Acadia First
Nation” or “Gold River Reserve” or “Horton Reserve” or “Shubenacadie First Nation” or “Indian Brook Reserve” or
Wagmatcook or Waycobah or “Millbrook First Nation” or Malagawatch or “Medway River” or Membertou or
Merigomish or Musquodoboit or “New Ross Reserve” or “Pennal Reserve” or Pomquet or Poonhook or “Sheet
Harbour” or “St Croix Reserve” or “Summerside Reserve” or “Sydney Reserve” or “Truro Reserve” or We'koqma'q
or Wycocomagh or “Wildcat Reserve” or “Yarmouth Reserve” or Aklavik or “Banks Island” or Behchoko or “Rae
Edzo” or “Colville Lake” or “De Cho” or Deline or Denendeh or “Fort Good Hope” or “Fort Liard” or “Fort
McPherson” or “Fort McPherson” or “Fort Providence” or “Fort Providence” or “Fort Simpson” or “Fort Smith” or
Gameti or “Hay River” or Inuvik or “Jean Marie River” or Lutselk'e or “Norman Wells” or Paulatuk or “Sachs
Harbour” or “Trout Lake” or Tsiigehtchic or Tuktoyaktuk or Tulita or Tulit'a or Ulukhaktok or “Victoria Island” or
Whati or “Wha Ti” or Wrigley or “Hare Nation) or “Hare people” or Slavey or Chipewyan or Tlicho or Dogrib or
Yellowknives or Dene or Sahtu or Inuvaluit or Inuinnaqtun or “Goose Bay” or Sheshiatshiu or Nain or Rigolet or
Hopedale or Utshimasset or “Davis Inlet” or “Conne River” or Postville or Makkovik or “Lake Melville” or
Urahimassit or Kaska or Kaskas or Tlingit or Dene or Gwich'in or Gwichin or Gwitchin or Kutchin or Sahtu or
Tlicho or “Tli Cho” or Nunavut or Nunavut or “Alert Bay” or “Alexandra Fiord” or Amadjuak or “Aquiatulavik
Point” or “Arctic Bay” or Arviat or “Baffin Island” or “Baker Lake” or “Bathurst Inlet” or “Belcher Islands” or
“Bylot Island” or “Cambridge Bay” or “Cape Dorset” or “Cape Dyer” or “Cape Smith” or “Charlton Depot” or
“Chesterfield Inlet” or “Clyde River” or “Coral Harbour” or “Craig Harbour” or “Dundas Harbor” or “Ellesmere
Island” or Ennadai or “Eskimo Point” or “Fort Conger” or “Fort Hope” or “Fort Ross” or “Gjoa Haven” or “Grise
Fiord” or “Hall Beach” or “Hazen Camp” or Igloolik or Ikaluit or Iqaluit or Isachsen or Kekerten or Kimmirut or
“King William Island” or Kipisa or Kitikmeot or Kivalliq or Kivitoo or Kugaaruk or Kugluktuk or “Maguse River”
or Nanasivik or “Nottingham Island” or Nuwata or Padlei or “Padloping Island” or Pangnirtung or “Perry Island” or
“Pond Inlet” or “Port Burwell” or Qoloqtaaluk or Qikiqtarjuaq or “Rankin Inlet” or “Read Island” or “Repuilse Bay”

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or “Resolute Bay” or “Resolution Island” or Sanikiluak or Taloyoak or “Tanquary Camp” or Tavani or “Thom Bay”
or Umingmaktok or “Victoria Island” or “Wager Bay” or “Whale Cove” (Campbell, Dorgan, and Tjosvold 2014).