Health and Social Care in the Community (2010) 18(5), 483–491
doi: 10.1111/j.1365-2524.2010.00922.x
Providers’ perceptions of Aboriginal palliative care in British Columbia’s rural
interior
Heather Castleden
PhD
1
, Valorie A. Crooks
PhD
2
, Neil Hanlon
PhD
3
and Nadine Schuurman
PhD
2
1
School for Resource and Environmental Studies, Kenneth C Rowe Management Building, Dalhousie University,
Halifax, NS, Canada, 2Department of Geography, Simon Fraser University, Burnaby, BC, Canada, and 3Geography
Program, University of Northern British Columbia, Prince George, BC, Canada
Correspondence
Heather Castleden
School for Resource and
Environmental Studies
Kenneth C Rowe Management
Building
6100 University Avenue
Suite 5010
Dalhousie University
Halifax, NS, Canada B3H 3J5
E-mail: heather.castleden@dal.ca
Abstract
Aboriginal Canadians experience a disproportionate burden of ill-health
and have endured a history of racism in accessing and using health care.
Meanwhile, this population is rapidly growing, resulting in an urgent
need to facilitate better quality of living and dying in many ways,
including through enhancing (cultural) access to palliative care. In this
article, we report the findings from a qualitative case study undertaken
in rural British Columbia, Canada through exploring the perceptions of
Aboriginal palliative care in a region identified as lacking in formal
palliative care services and having only a limited Aboriginal population.
Using interview data collected from 31 formal and informal palliative
care providers (May–September 2008), we thematically explore not only
the existing challenges and contradictions associated with the prioritisation and provision of Aboriginal palliative care in the region in terms of
(in)visibility but also identify the elements necessary to enhance such
care in the future. The implications for service providers in rural regions
are such that consideration of the presence of small, and not always
‘visible’, populations is necessary; while rural care providers are known
for their resilience and resourcefulness, increased opportunities for
meaningful two-way knowledge exchange with peers and consultation
with experts cannot be overlooked. Doing so will serve to enhance
culturally accessible palliative care in the region in general and for
Aboriginal peoples specifically. This analysis thus contributes to a
substantial gap in the palliative care literature concerning service
providers’ perceptions surrounding Aboriginal palliative care as well as
Aboriginal peoples’ experiences with receiving such care. Given the
growing Aboriginal population and continued health inequities, this
study serves to not only increase awareness but also create better living
and dying conditions in small but incremental ways.
Keywords: Aboriginal people, access to health care, inequalities in health
and health care, palliative care, qualitative research, rural health care
Accepted for publication 5 March 2010
Introduction
Aboriginal peoples, who include Métis, Inuit and members of First Nations (formerly referred to as Indian
Bands) in Canada, have numerous distinct cultures, yet
they share common histories of colonialism involving
marginalisation, exploitation and maltreatment (Castleª 2010 Blackwell Publishing Ltd
den et al. 2008). They also face the challenge of coping
with significant health inequities relative to the larger
Canadian population (Waldram et al. 2006) and often
lack recognition of their desire for self-determination
and autonomy in terms of how they engage in both
living and dying (National Aboriginal Health Organization 2002). At the same time, Aboriginal peoples are
483
H. Castleden et al.
now living longer and experiencing a higher incidence
of chronic and degenerative disease such as diabetes
and cancer and their related impairments (Assembly of
First Nations 2005). As a consequence, their end-of-life
stage may be protracted and require concentrated palliative support, which is often only accessible outside of
their home communities and ⁄ or in institutionalised settings such as hospitals (Kitzes & Berger 2004, Gorospe
2006).
In recent years, there has been a rapid trend towards
migration to cities and roughly 60% of Aboriginal Canadians now live in ‘non-isolated’ areas (National Aboriginal Health Organization 2002). Access to comprehensive
and appropriate palliative care in Canada is difficult in
both contexts: in rural settings, healthcare delivery is
challenged by lack of resources (Crooks & Schuurman
2008); while in urban centres, palliative care is often
divorced from the cultural norms and needs of Aboriginal peoples (Hotson et al. 2004, Allec 2005, Gorospe 2006,
National Aboriginal Health Organization 2007). Yet at
present, there is no Canadian standard for Aboriginal
palliative care. Aboriginal peoples thus access the same
set of services as do other Canadians – services that
were not designed with sensitivity to cultural differences
(Hotson et al. 2004, Allec 2005, Ellerby et al. 2006).
British Columbia (BC), Canada’s most westerly province, is home to approximately 196 000 Aboriginal peoples representing no less than 30 distinct cultural groups.
Palliative care services in the province are located
unevenly, with most team-based and specialised care
offered in larger urban centres (Cinnamon et al. 2008).
General practice physicians provide the bulk of palliative
care (Canadian Institute for Health Information 2008)
and most BC communities do have reasonable access to
non-specialised care (Pong & Pitblado 2005, Watson et al.
2005). The province’s Ministry of Health recognises that
current access to palliative care is inadequate for many
citizens and that this must be addressed (British Columbia Ministry of Health 2006). There are, in fact, calls to
enhance palliative care in general across the country
(Health Canada 2005).
Acknowledgement of the cultural, linguistic and ethnic diversity of BC’s residents has yet to translate into a
strengthened approach to palliative care. In 2006, the BC
Ministry of Health released a framework on palliative
care that prioritises administration, accessibility and
co-ordination, but neglects to mention, for example, the
specific needs of non-urban communities and has only
limited acknowledgement of the need to offer culturally
sensitive care to all citizens. Admittedly, the framework
is a starting point and not an actual blueprint for how
care should be provided; however, the lack of attentiveness to cultural sensitivity at this stage may prevent the
prioritisation of this issue into guidelines for service
484
providers. BC is not alone in this regard. Numerous
studies have pointed out challenges palliative care
administrators and providers face in either prioritising
or providing culturally sensitive care in general (Hall
et al. 1998, Gatrad & Sheikh 2002, Owens & Randhawa
2004, Kemp 2005, Thomas et al. 2008) and for Aboriginal
peoples specifically (Kaufert & Lavallee 1999, Kitzes &
Domer 2003). Research is thus needed not only to document further challenges but also to identify ‘ways ahead’
in terms of delivering more culturally sensitive palliative
care.
The study
In this article, we present the findings of a qualitative
case study examining palliative care services and provision in the rural interior of BC. The purpose is to explore
current realities, particularly the challenges of delivering
culturally sensitive and safe palliative care for Aboriginal
peoples in a rural area where they form only a small
minority of the local population. This is a much needed
contribution to the Aboriginal palliative care literature as
research has traditionally focused on care provision in
reserve communities, urban settings and places that have
sizeable Aboriginal populations (e.g. Hotson et al. 2004,
Allec 2005, Gorospe 2006). Our specific objectives are to:
(1) thematically explore the challenges inherent in prioritising and providing culturally sensitive palliative care to
the region’s Aboriginal minority population; (2) identify
elements that are necessary for further enhancing such
care; and (3) consider the implications of our findings for
service providers and administrators in the region and in
other communities that are home to small Aboriginal
populations.
Case study site overview
The West Kootenay-Boundary (WKB) region of BC is a
lightly populated and widely dispersed region of small
towns and cities. The analysis presented in this article
focuses on three such communities: Trail, Nelson and
Castlegar. These communities were selected for this
qualitative case study based upon the findings of a
detailed spatial analysis aimed at identifying regions of
rural BC that have limited access to palliative care (Cinnamon et al. 2009). Trail is the largest of the communities,
with a population of 18 131 (Statistics Canada 2002) and
participants characterised it as being a ‘blue collar, onecompany town’. It is also home to the WKB regional hospital. Nelson has a population of 9585 (Statistics Canada
2002) and is characterised as being an artistic community
where a number of holistic and alternative health therapies are practised. Finally, Castlegar is home to 7610
residents (Statistics Canada 2002) and described as the
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Providers’ perceptions of Aboriginal palliative care
‘crossroads of the Kootenays’ given its centralised location in the region. Basic health services were available in
all of the case study communities, including local access
to family doctors, nurses, pharmacists and clinics. Each
town had its own volunteer hospice society and there
were eight designated palliative care beds between them
in extended care facilities and the regional hospital, with
supported home-based care also available.
Sinixt (Aboriginal) people, identified as the original
inhabitants of the WKB region, were declared extinct by
Canada’s federal government in 1956, something that lingers in the collective memories of people in the region.
Despite this, people claiming Sinixt identity recently filed
a land claim to access their traditional territory through
the Canadian court system. The government’s declaration of extinction aside, people identifying as Aboriginal
do live in the WKB. According to Statistics Canada
(2006), there were 450 Aboriginal people living in Trail,
300 in Nelson and 275 in Castlegar, a total of 1025 of the
2000+ people reporting Aboriginal identity in the region
(reporting Aboriginal identity on the Canadian census
tends to under-represent actual numbers of Aboriginal
people). However, there are no local Aboriginal reserves
or treaty lands in the immediate vicinity of the WKB.
Thus, in comparison to the surrounding communities in
BC’s interior, the region has a relatively limited Aboriginal population.
Methods
The findings presented here contribute to a larger study
focused on palliative care in BC’s rural interior. The overall goal of the larger study was to examine palliative care
service provision in this region and explore the potential
for providing more regionalised care – specifically
through the creation of secondary palliative care hubs –
by determining localised barriers and facilitators to such
service delivery. In order to do this effectively, consulting
with local formal (e.g. paid health service workers) and
informal (e.g. family caregivers, pastors, volunteers) palliative care providers was a necessary step so that we
might better understand how palliative care is currently
being provided. In 2008 (May–September), we conducted one-on-one phone interviews (n = 31) with a
range of formal and informal palliative care providers in
the WKB region.
Participants were recruited using a purposeful strategy in order to maximise diversity across communities
in the WKB region and occupations. An initial group of
potential participants was contacted using networks held
within the investigative team. Calls for participants were
also placed on the electronic listserves of key associations. Further recruitment occurred through reviewing
employee listings for the regional health authority and
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health service sites (e.g. the regional hospital), through
targeted internet searches and snowball sampling. In
total, 40 people were contacted, 31 of whom ultimately
took part in the study. These participants provided a
range of palliative care services in the WKB region (see
Table 1). While many provided services in multiple communities, they identified their main community of practice to be: Nelson (n = 5); Trail (n = 11); and Castlegar
(n = 13). Two participants were providers in northern
BC who had expert knowledge of the state of rural palliative care provision throughout the province. The
research team agreed that their input would provide an
important comparative perspective between regions. On
detailed analysis, rather than contrasting to participants
in the interior, their responses were complementary and
thus integrated into the data set.
Phone interviews lasted 1.5–2 hours and were conducted by the lead author in order to enhance consistency. A semi-structured guide was used that covered:
experience with palliative care; community descriptions;
community health and healthcare priorities and challenges; community need for palliative care and existing
availability; community palliative care challenges; and
the secondary palliative care hub approach. With the
exception of a series of 21 short Likert scale questions
asked at the end of the interview about the hub
approach, the questions posed were open-ended and, as
is the nature of semi-structured interviewing, participants were also asked to share with us any other information they felt was relevant but not addressed in the
interview. Procedures for obtaining informed consent
and all other aspects of the study were reviewed and
approved by the Office of Research Ethics at Simon
Fraser University and the Interior Health Authority.
Analysis
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. To guide the
Table 1 Participants’ roles in palliative care service provision
Role ⁄ occupational group
Number
Nursing
Healthcare administrator
Hospice ⁄ palliative care volunteer
Other
Family doctor
Pastor ⁄ minister
Hospice society worker
Allied healthcare professional
Family caregiver
7
6
5
4
2
2
2
2
1
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H. Castleden et al.
coding, a meeting was held among the investigators in
order to identify issues emergent from the data set following a detailed transcript review. Five major analytic
issues were identified, one of which forms the basis of
this study. Organisational codes relevant to the analytic
issues were then determined and applied to the data set.
Upon completion of the coding, a thematic analysis was
undertaken. This resulted in the identification of three
themes – discussed in detail below – that crosscut the
present analysis. Such an approach is consistent with the
adopted analytic technique, whereby thematic analysis
involves categorising coded data based on patterns that
are evident within the data set and comparing such
themes to the study purpose and existing literature
(Aronson 1994). Interpretation of the themes was confirmed across investigators in order to enhance the rigour of the analytic process.
Findings
At the outset, it is important to emphasise that Aboriginal palliative care was not a focus of the larger study,
nor was it intended as an analytic issue. However, as
data collection began, it became clear that ‘perceptions of
culture’ was an important topic that warranted further
analysis, particularly in relation to Aboriginal peoples
and access to ⁄ use of palliative care in the WKB. We identified three major themes regarding the provision of palliative care for Aboriginal residents in the WKB: the
visibility of and access to culturally sensitive service provision; contradictions in perceptions of this provision;
and the necessary elements for providing culturally sensitive care. These themes are elaborated upon below.
Visibility ⁄ invisibility
Participants described the WKB as having a very different ethnic composition in contrast to other regions of the
province. While BC has substantial Aboriginal and
immigrant populations, participants viewed the WKB
as having a largely white population. One participant
commented:
[The region] would be mostly, I’m going to say, white
Anglo Saxon communities. There’s very few black or darker skinned, Afro-American people, very few… Oriental or
Asian people…you know, fairly mono-cultural.
Participants did, however, identify three distinct
cultural groups as having settled in the region: Russian
Dukhabors; Italians; and Portuguese. These were the
groups reported as being visible in palliative care sites.
Participants had varied responses about the presence
of Aboriginal peoples in the region, ranging from reporting that there were ‘none’ to ‘some’.
486
The original group that was here, the Sinixt, were declared
extinct. But they still exist in small numbers, and they
don’t think they’re extinct.
Clearly, the statistics reported above demonstrate the
presence of Aboriginal peoples in the WKB. Interestingly, a few participants noted that there has been an
emerging trend of ‘coming out’ among Aboriginal peoples. Long-standing racism has historically led many
Aboriginal people to avoid self-identifying in order to
avoid substandard care (Browne & Fiske 2001). One participant explained:
There is definitely a lot of Métis people, and in fact the
population of Métis people [in the region] increased by
48% since 2001 to 2006…the most obvious [reason for this]
is increased confidence and cultural pride.
However, this increase in self-identifying as Aboriginal did not seem to translate into participants having a
heightened awareness of the presence of Aboriginal peoples in the region generally, or as recipients of palliative
care services specifically.
When participants described whom they actually saw
in the palliative care beds in institutionalised settings,
they identified mainly white people.
I see mostly white faces. They may have…some other background that comes out in their speech, but white faces generally.
It was also suggested that middle-income earning
white people were the most likely to use palliative care
because it was more culturally accessible to them. Participants further suggested that cultural minorities in the
region such as Aboriginal peoples were more likely to
‘take care of their own’. This could be due to lack of awareness of local palliative care services, or due to factors
such as (un ⁄ intentional) exclusion from such provision
or being invisible to formal care providers due to being
cared for in private home spaces. Furthermore, the seeming invisibility of Aboriginal peoples specifically may, in
part, be linked to the stereotyping of physical characteristics. As one participant explained:
There’s [Aboriginal] people that are lighter skinned, and
they are... half. There’s a whole large group that are half,
intermix or whatever. So I can’t identify them.
In this instance, appearance was being relied upon as
an indicator of Aboriginal identity rather than on, for
example, the presence of local cultural events or organisations.
Contradictions
How participants approached palliating clients of different cultural backgrounds was inconsistent. Some
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Providers’ perceptions of Aboriginal palliative care
reported that service provision was delivered on an individual basis and that it ‘boils down to each individual family’. Others suggested that cultural differences were set
aside so that clients received equal access and care. One
participant went so far as to say:
When [you’re] going as a hospice worker you don’t have
any prejudice – I don’t and nobody does – about their culture and religion.
Statements from other participants, however, contradict this characterisation of care. For example:
Just recently actually there has been a patient who went in
to receive services and was racially attacked and the physician was using terminology, ‘You people are always,’ you
know just over generalized comments, and using [an] elevated voice to… ensure that they’re heard, and the patient
left with little dignity... that person has some chronic and
acute health issues, and requires regular contact with
health services, and is now feeling very, very distrustful,
and scared to… even enter the building.
Other participants also acknowledged that clients
presenting with mental health problems, a history of
substance abuse, obesity, low socioeconomic status
and ⁄ or homelessness have been subject to unequal treatment.
Interestingly, those participants who did recognise
the existing Aboriginal population presented contradictory statements about where Aboriginal people go to die
or be cared for while dying. Some participants suggested
that Aboriginal peoples did not choose to stay in the
region to die. Rather, as one participant explained:
[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.
Other participants presented opposite views, as noted
in the following:
Some who have been associated with a reserve will go
back, but most don’t.
The incongruity of these two viewpoints suggests that
much still remains to be understood about Aboriginal
peoples’ ways of receiving palliative care and dying in
the WKB region.
Participants typically resorted to making generalisations about different cultural groups when asked to discuss cultural needs in palliative care, although often
with qualifying statements. For example, in the context
of access to palliative care, access was seen as equal
but that not all groups were interested in using such
services.
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The traditional Canadian family [is] probably more receptive to palliative care services than some of your more ethnic minority groups are…they may not be as open to that
level of service when it’s offered to them... So I don’t think
there’s any denial of access. I think it’s just whether the
recipients are receptive to what’s being offered.
This statement suggests there may be a need for better understanding of the wants and needs of cultural
groups in the region.
In the specific context of Aboriginal palliative care,
generalisations and assumptions were made, as can be
seen in the following statement:
I think they’re getting more tuned to what their past spiritual practices were and so I think that’s helpful. You know,
like they now do smudging and all that sort of thing,
which I don’t think they did in the past, or certainly not
that we knew of.
First, there is a generalisation that Aboriginal peoples
smudge, that is the burning of traditional medicines (e.g.
cedar; sage; sweet grass) to cleanse, as a form of spiritual
practice; meanwhile not all Aboriginal peoples adhere to
traditional belief systems (Kelly & Minty 2007). Second,
there is an assumption that spiritual practices have not
consistently occurred in the region, whereby more reasonably – given the negative colonial policies and practices most Aboriginal peoples have experienced – these
practices have not been made visible to health service
providers (Browne & Fiske 2001). At the same time, an
important acknowledgement is made that recognises
providers have not always been aware of the cultural
needs of Aboriginal clients in the region.
Necessary elements
Participants identified several ‘necessary elements’ for
providing culturally safe Aboriginal palliative care in the
WKB region. Due to an expressed lack of awareness
regarding cultural differences in death and dying, they
spoke with some frequency about the need for training
to meet their desire for providing care with cultural competence.
Do we culturally understand the differences in the way
people approach death? I’m not sure any of us have had,
in this area, very much training or exploration of that.
Such lack of training may lead to cultural misunderstandings:
I’m sure some different cultures might be misread with
regard to managing their pain or supporting the family,
those kinds of issues.
Those participants who did have experience with palliating Aboriginal clients suggested that differences in
how both care and dying were experienced were based
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H. Castleden et al.
on differing worldviews. A participant attempted to
articulate this difference:
They are very ‘in the moment’. I don’t know if that’s a cultural thing.
The participant alludes to the possibility of experiencing life and death in a particular way, attributing it to a
cultural phenomenon, while also expressing uncertainty
in her statement about how to make sense of such difference. However, some participants did not see the need
for training in cultural sensitivity.
The [Aboriginal] people who do live here have more or
less adapted to our – for the lack of a better word – white
man’s ways. They live within the community. They have
amalgamated. They’re in the melting pot.
Alternatively, experiences of prejudice, discrimination and racism may have led many Aboriginal peoples
to suppress their Aboriginal indentity in public spaces
(Browne & Fiske 2001). This last point further reinforces
the need for training in how to provide culturally safe
palliative care to the region’s Aboriginal population,
which some participants indicated would lead to greater
access to health care for this and possibly other marginalised groups.
Participants were asked to describe the ideal location
for receiving palliative care. Typically, their responses
indicated that death should occur in a place determined
by the client, whether that was in the person’s home or
an institutional setting, and that this is a necessary element for providing the best care possible. Based on their
experiences, most described a home-like environment as
being idyllic, and a freestanding hospice house as being
their vision for palliative care in the region. When thinking about the ideal palliative care scenario for Aboriginal
clients, one participant noted that it would be:
[V]ery important that palliative areas are physically nonthreatening or [as] least institutionalized as possible just
because of the residential school experience…and to end
your life in a building that may look like that could…
really trigger some emotional stuff.
Considering the necessary elements for providing
culturally safe Aboriginal palliative care, this comment
serves as a reminder that hospitals and long-term residential care units run the risk of presenting more damage than benefit in light of the colonial legacy of
institutional settings for Aboriginal Canadians.
Participants often explained that they had to make do
with whatever existing resources they had available in
order to accommodate Aboriginal peoples (and people
from other cultural minorities) into their practice. They
were, however, able to make suggestions about how best
to allocate new resources dedicated to enhancing Aborig-
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inal palliative care in the region. One suggestion was to
make more of an effort to (re)connect dying Aboriginal
peoples with their homelands. While many Aboriginal
peoples no longer reside in their traditional territories,
having a connection to one’s homeland remains innately
important (Castleden et al. 2009b). It was explained:
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.
Here, the suggestion was to present Aboriginal palliative care clients with soil from their home territory. Participants who were either Aboriginal themselves or were
actively involved with the region’s Aboriginal population identified a number of similar necessary elements in
their visions for Aboriginal palliative care. These
included having an appropriate physical location and
care space, being in close proximity to natural surroundings, being able to practice ceremonial activities while
receiving care, having access to traditional foods and the
use of traditional medicines. Clearly offering culturally
sensitive care practices such as those described requires
dedicated resources and thus serves as a necessary element to providing Aboriginal palliative care in the
region.
Discussion
Recent studies indicate that the under-utilisation of
health services by cultural minorities is often due to cultural and conceptual differences in how health is understood and achieved, as well as systemic barriers, which
are embedded within service systems (Mulvihill et al.
2001, Fung & Wong 2007). It is thus likely that these factors also affect Aboriginal peoples’ use of palliative care
in BC’s interior. Research suggests that attention must be
given to overcoming barriers and understanding differences in useful ways in order to facilitate equitable access
to health services. For example, having minority representation among health professionals, linguistically
accessible health education materials, language interpretation and cultural competence training for healthcare
providers are recommended interventions (Beach et al.
2005, Price et al. 2005, Gozu et al. 2007).
From the data, four ‘necessary elements’, which can
serve as interventions to enhance the provision of palliative care for Aboriginal clients, are identified: (1) allocating resources to establish strategies such as culturally
specific practices (e.g. smudging) that will facilitate experiencing a good death; (2) providing culturally safe care
that supports people in claiming and embracing their
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Providers’ perceptions of Aboriginal palliative care
Aboriginal identity at end-of-life; (3) giving care in
spaces that do not re-institutionalise Aboriginal people;
and (4) offering training to formal and informal service
providers regarding cultural practices in death and
dying. These necessary elements build upon and contribute to the vision for palliative care set out by the National
Aboriginal Health Organization (2002, 2007).
The findings point to the fact that both the region’s
‘rurality’ and the presence of a marginal Aboriginal population are highly relevant to how participants discussed
palliative care. The few studies of Aboriginal palliative
care practices have largely taken place ‘on reserve’ where
Aboriginal peoples share a common cultural identity or
in urban settings where they are often removed from
their cultural norms and needs. The WKB region thus
presents an atypical case. There are individuals with
Aboriginal identity in the region, but the relative homogeneity of the white population renders cultural differences invisible at times – when a Métis person does not
‘look Aboriginal’ – and visible at other times – when
someone’s cultural practices do not fit the norm. This situation presents numerous challenges for formal and
informal palliative care providers alike, who must be
attuned to the importance of unique and different cultural practices while at the same time must avoid generalisations or assumptions about individual needs or
desires.
Although this challenge is not unique to the region,
the way it plays out in this particular place is clearly
informed by the presence of a minority and heterogeneous – in that they do not share a common identity or
live on the same reserve – Aboriginal population. Interestingly, the rurality of the location can offer ways to provide culturally safe and sensitive care that may not be
available in more populated urban centres. For example,
care providers in the WKB region are in a position to
draw upon the strengths of rural communities, which in
Canada are often described as ‘tight-knit’ and as places
where neighbours care for one another. Furthermore, the
lack of specialists practicing in the region may result in
clients receiving palliative care from longer-term healthcare providers who may have a better sense of their personal and cultural histories thus enhancing the
continuity of care provided. However, this is not to say
that physical and social barriers to accessing quality palliative care are absent (Castleden et al. 2010).
Where Aboriginal palliative care should take place,
and by whom, are particularly important concerns in the
context of Aboriginal peoples’ interactions with the
Canadian healthcare system, given the legacy of mistrust
resulting from the colonial encounter. Considering the
similarity of colonial histories in Australia and New Zealand (Anderson et al. 2006, Smylie et al. 2006), there is
value in linking with research in these regions (see, for
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example, McGrath et al. 2006, 2007, McGrath & Phillips
2008). If, as the participants in this study indicate,
Aboriginal peoples take care of their own, then perhaps
creating a model that, in essence, forces inclusivity is not
the appropriate solution. Rather providers and policymakers should seek direction from representatives from
these cultural groups about how ⁄ if there is something
that could be done differently from current practices of
service delivery.
Implications for service providers
Palliative care service providers in the region must more
actively consider the presence of a small and not always
‘visible’ Aboriginal population. Such a challenge is not
uncommon for rural care providers, whose practice often
requires them to become ‘expert generalists’. But while
providers in rural settings often pride themselves on
their resiliency and resourcefulness, most would also call
for much greater administrative support and opportunities to consult with peers and other health providers
when faced with challenging or unfamiliar circumstances. In the context of this paper, this may include
providing formal opportunities to dialogue across collegial and professional groups about strategies for enhancing culturally accessible palliative care in the region in
general, and for Aboriginal peoples specifically. With
respect to offering training for service providers regarding cultural practices in death and dying, developing
capacity and recruiting formal and informal Aboriginal
palliative care providers is a logical extension to facilitate
culturally safe spaces and culturally competent care. A
recently published report on Aboriginal-focused palliative care in rural BC suggests there is strong interest from
Aboriginal communities to do so (Castleden et al. 2009a).
The presence of regional health boards in BC provides a potential platform from which to organise efforts
to enhance capacity, through the provision of planning
meetings, conferences, networking opportunities and
educational sessions emphasising cultural issues in
delivering palliative care. Such initiatives could connect
rural and small town providers with those from elsewhere in the region and beyond who have particular
expertise that is needed locally, including with regard to
caring for Aboriginal peoples. Ideally, a regional
approach to cultural capacity building would acknowledge the skill and dedication of local palliative care providers, and provide a forum for a meaningful two-way
exchange between generalists and specialists.
Conclusion
In this article, we have explored formal and informal
palliative care service providers’ perceptions of culture
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differences in a rural Canadian setting that is regarded
as lacking in cultural diversity. Specifically, we examined their experiences with delivering palliative care to
Aboriginal peoples who form only a small minority of
the regional population. We found that the visibility of
and access to culturally sensitive service provision led
to contradictions in perceptions of this care. We subsequently identified a number of necessary elements for
providing palliative care that were sensitive to the histories and cultures of Aboriginal peoples. This analysis
begins to address a substantial gap in the palliative
care literature concerning Aboriginal peoples’ experiences with receiving such care. That people with
Aboriginal identity experience significant health disparities in contrast to other Canadians (Health Canada
2008) and that they are the fastest growing population
in Canada (Abele 2004) suggests an imperative to
engage in such studies in order to create better living
and dying conditions for the descendants of Canada’s
original inhabitants.
Acknowledgements
We are thankful for the time that participants gave
us and for their contribution to the study. Thanks
are also given to the editors and reviewers for their
constructive comments. This study is funded by a
research grant from the BC Medical Services Foundation and a team-building grant from the BC Rural &
Remote Health Research Network. HC was funded
by a postdoctoral fellowship from the Network Environments for Aboriginal Research BC during the
study period and NS by career awards from the
Canadian Institutes of Health Research and Michael
Smith Foundation for Health Research.
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