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Exploring Yamatji perceptions and use of palliative care: an ethnographic study Melanie Dembinsky
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he scope of palliative care has significantly changed since its inception in the 1960s and 1970s (Kehl, 2006). Palliative care as a specialty has ‘sought to detach itself from an exclusive focus on terminal illness by redefining itself to incorporate almost all care that is not directed at cure’ (Seale, 1998: 113). Palliative care service provision in Western Australia is oriented according to the World Health Organization (WHO) conceptualisation of palliative care (WA Cancer & Palliative Care Network, 2008). The WHO (2012) defines palliative care as ‘an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual’. McNamara et al (1994) noted a high degree of institutionalisation in the concept of the ‘good death’ in Western Australian hospice care, characterising it as lacking in spontaneity, flexibility, and individuality. Since Glaser and Strauss’s (1970) definition of a good death as calm and orderly dying framed in planned dying trajectories, major progress has been made in this area (Tong et al, 2003; Proulx and Jacelon, 2004; Kehl, 2006). In 1997, an Institute of Medicine report on end-of-life care defined a good death as one that is ‘free from avoidable distress and suffering for patients, families, and caregivers; in general accord with patients’ and families’ wishes; and reasonably consistent with clinical, cultural, and ethical standards’ (Kehl, 2006: 277). This definition of the good death informs Western Australian palliative care practice and service delivery (WA Cancer & Palliative Care Network, 2008). Despite these advances in understanding, implementation remains challenging in an aboriginal context, especially with regard to flexibility and individuality. Palliative care services are greatly underutilised by indigenous peoples in Western Australia,
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Abstract
Background: The Yamatji people comprise several Aboriginal groups living in the Midwest region of Western Australia. Palliative care remains underutilised among Aboriginal groups, but little is known about Yamatji people’s thoughts about and experiences of accessing services. Aim: As part of a broader study focusing on Yamatji’s lived experiences of breast cancer, this study analysed their perceptions and use of palliative care services. Methods: The study used grounded theory and 28 in-depth interviews with Aboriginal and non-Aboriginal health-care providers as well as Yamatji patients, carers, and families. Results: Palliative care services are underutilised by Yamatji breast cancer patients. The reasons for this include misperceptions about what palliative care entails, cultural and structural barriers to adequate service provision, and the inflexibility of institutionalised death. Conclusions: Efforts to raise awareness among Yamatji that palliative care is broader than end-of-life care would be a step in the right direction, but would not be sufficient to significantly increase uptake among Yamatji if culturally specific perceptions of death and dying are not included in the dialogue. Key words: Palliative care l Breast cancer l Aboriginal Australia l ‘Good’ death l Cultural security
despite these populations having higher mortality for various diseases, including breast cancer (WA Cancer & Palliative Care Network, 2008). This overall trend is apparent among Yamatji women in the Midwest region of the state. ‘Yamatji’ is a term from the Wadjari language referring to Aboriginal peoples of the Midwest region of Western Australia. The term is a result of the fusing of the separate social identities of several local Aboriginal groups (Berndt, 1979). Yamatji use of the word ‘country’ refers to specific geographical areas and sites that are intrinsically linked to Yamatji personhood and identity. An individual’s ‘country’ is determined through numerous factors such as their birthplace, their parents’ place of death, sites in which the individual has experienced significant life stages or events (e.g. initiation sites), and geographical areas where a large part of the
Melanie Dembinsky, Lecturer in Social Anthropology, School of Anthropology and Conservation, Marlowe Building, University of Kent, Canterbury, CT2 7NR, England Email: M.Dembinsky@ kent.ac.uk
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that palliative care as a part of breast cancer trajectories for participants was a continuous and analytically relevant theme. Therefore, the aim of the present study was to explore perceptions and use of palliative care services in Yamatji country.
WESTERN AUSTRALIA Case Study Region
100 200 km
Methods
Port Hedland
Jigalong
Newman Burringurrah Carnarvon Yulga Jinna
YAMATJI
Meekatharra
Wiluna
Cue Yalgoo Mt Magnet Mullewa Geraldton
Laverton
Leonora Kalgoorlie-Boulder
PERTH
ATSIC region Aboriginal communities
Figure 1. Yamatji land
Ethical approval
individual’s life has been spent. The intricacies are very complex and warrant a paper in their own right (Myers, 1986; Poirier, 2005; FeltonBusch, 2009). Yamatji land encompasses roughly 415 330 km² of Western Australia, with a total population of around 54 500 (Australian Bureau of Statistics, 2007) (Figure 1). The majority of the area is scarcely populated, with a few rural centres along the coastline. Among these rural towns, Geraldton is the largest and most important for Yamatji. As Prout (2009: 181) explained: ‘Geraldton is a common reference point for Aboriginal people throughout Yamatji country because of the more extensive range of public and retail services available there.’ Prior to this study, nothing had been published specifically about Yamatji use of palliative care services. Studies have examined palliative care use in Western Australia, notably McGrath et al (2007a; 2007b) and Rosenwax and McNamara (2006). These studies distinguished between indigenous and non-indigenous usage and perceptions.
Ethical approval for this research was granted by the University of Kent’s Research Ethics Committee, the Western Australian Aboriginal Health Information and Ethics Committee, Geraldton Regional Aboriginal Medical Services, and participating Yamatji communities.
Aim
The majority of participants were Yamatji women diagnosed with breast cancer, their kin carers, and family members who did not also function as carers. Additionally, five Yamatji health workers and/or indigenous programme officers of public health institutions and three
This study was part of a doctoral thesis in medical anthropology examining lived experiences of breast cancer among Yamatji women in Yamatji country. A preliminary analysis of data collected for the purpose of the thesis revealed
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The data presented here is based on long-term empirical research that began in 2010 as part of doctoral investigations into Yamatji experiences with breast cancer. As such, it is part of a broader endeavour that is ongoing even after the completion of the doctoral thesis. Using a combined methodology of grounded theory and ethnographic immersion allowed a high level of flexibility and adjustment in research trajectories. Grounded theory, as defined by Glaser and Strauss (1967: 2), is ‘the discovery of theory from data systematically obtained from social research’. Long-term ethnographic immersion, living among participants and in similar conditions, added the capacity to incorporate daily experiences of illness trajectories that surpassed medical interventions and interactions.
Recruitment Participants were recruited through Geraldton Regional Medical Services and the Indigenous Women’s Support Network. Initial contact with potential participants was made through local Yamatji women working in either of these institutions. This was necessary to follow local social etiquette and to explain the researcher’s presence in the community. Cultural mentors stood as substitute kin to vouch for the author’s character and trustworthiness, which was crucial to gaining access to participants. Once rapport had been established between the author and five key members of the Indigenous Women’s Support Network, further participants were recruited through snowball sampling.
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non-Aboriginal palliative care managers and/or nurses were included in the sample (Table 1). Owing to strict gender divisions among Yamatji and the broader focus on breast cancer experiences, only two male participants were included. The youngest participants were in their early 30s and the oldest in their late 80s (Table 2). Identifying characteristics and names have been altered to ensure anonymity and confidentiality, except for participants whose names have been mentioned in other publically available documents. Participants have been presented with the textual analysis of situations and events pertaining to their stories when requested.
Data collection The majority of the data was collected during 25 informal interviews and participant observations. These permitted easier information flow than structured interviews, although the latter were also used. Three formal interviews using questions that arose from previously gathered data were conducted with medical personnel. The interviews lasted from 30 minutes up to 3 hours, with the formal interviews being shorter. The informal, unstructured interview is akin to the Aboriginal concept of ‘yarning’. Different types of yarning have been eloquently explained by Bessarab and Ng’andu (2010) and described as social yarning, research topic yarning, therapeutic yarning, and collaborative yarning. The type most relevant to research methods is research topic yarning, the sole purpose of which is ‘to gather information through participants’ stories that are related to the research topic’ (Bessarab and Ng’andu, 2010: 40). To yarn means to communicate following certain rules. Yamatji yarn when they want to pass on information through talking:
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‘Through the social yarn certain conventions and rules are established which sets the boundaries of how the yarn will take place and demands from the researcher an accounting of who they are in the research process. Because yarns are not fixed and can be messy; they are constantly negotiated between the researcher and participant in the process of making meaning and exploring the research topic.’ (Bessarab and Ng’andu, 2010: 47)
In addition, yarning requires and sets out ‘different rules, language and protocols for conducting conversations’ (Bessarab and Ng’andu, 2010: 38). These rules are generally known by Yamatji. Yarning conveys meaning with precision because of the inclusion of tone, language, body posture,
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Table 1. Participant role and indigenous status Aboriginal
Non-Aboriginal
Total
Health professional
5
3
8
Patient
10
0
10
Kin carer
4
0
4
Kin non-carer
6
0
6
Total
25
3
28
Table 2. Participant age and gender Age
Male
Female
Total
30–40
0
5
5
40–50
1
9
10
50–60
0
5
5
60–70
1
2
3
70–80
0
3
3
>80
0
2
2
Total
2
26
28
and overall body language, while at the same time adhering to unique communication styles expressed through semantics.
Data analysis The interviews were recorded where possible, and then transcribed, coded, and analysed thematically using NVivo 9 (QSR International), a qualitative data analysis programme. Data analysis started with line-by-line reading of the transcripts to code the data into themes, and these were then sorted and stored as ‘free nodes’ using NVivo 9. When recording was not possible, notes were taken either during the interview or immediately after the interview was completed. Interview notes were also thematically analysed using the themes identified during the transcript coding process.
Findings
Yamatji perceptions of palliative care and breast cancer Yamatji strongly associate palliative care services with death and end-of-life care. This was substantiated by a Yamatji health professional: ‘... palliative care is seen as end-of-life care by the Aborigines here.’ (Participant 2)
Breast cancer is still seen as a death sentence among Yamatji. During the initial research period from 2010 to 2011, a participant’s mother received a breast cancer diagnosis. The mother started to gather her family around, with the news of her expected death travelling along kinship lines,
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being passed on from one individual to another starting with her daughters. Gathering the family was about more than just being able to say goodbye—the mother wanted to set her affairs in order. According to the daughter, her mother ‘still had so much to do and wasn’t quite ready yet’. This statement and the mother’s actions clearly indicate that the breast cancer diagnosis was equated with impending death and the need to make appropriate preparations. According to the study participants, part of this preparation pertained to the redistribution of personal possessions, as wills and other legal documents such as life insurance policies are largely absent among Yamatji. This absence of legal documentation makes it necessary to orally pass on preferences for distributing personal effects.
Use of hospital-based palliative care services Within Yamatji country, there are two main hospitals that provide hospital-based palliative care services, both of which are located in the town of Geraldton. A palliative care unit manager from one of these institutions indicated that there is low uptake of services among Yamatji: ‘We do not have a lot of Aboriginal patients at the moment, and generally. We had some over the years, but they prefer to stay at home.’ (Participant 1)
The data gathered by the researcher included reports of geographical, logistical, and cultural barriers to Yamatji accessing hospital-based palliative care services. Not being able to die ‘in country’ was the biggest issue associated with using hospital-based palliative care services: ‘... they [doctors] don’t tell us in time when the treatment is not working, and then people die alone at the hospital far away from their country without anyone they know when they die. It’s disgusting!’ (Participant 2)
The anger, frustration, and disappointment evident in this statement point to the importance of country and family. Yamatji believe that if a person dies outside of their country, their spirit is doomed to roam eternally. Consequently, the life– death–life continuum is not completed and the spirit remains in a constant state of liminality as it is unable to reunite with the ancestral essence present in country. Other statements supported the importance of dying in country:
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‘We got mom home because she wanted to die in her home country.’ (Participant 3) ‘We took mom out bush, so she could die peacefully.’ (Participant 7)
Allowing Yamatji to die in country is not just culturally secure service delivery but also a form of closure for Yamatji patients. Specific ceremonies and practices surrounding death were also mentioned by participants, as was the importance of acknowledging life–death–life as a continuum. Another example of the strong desire of Yamatji to die in country was provided by the participant who was diagnosed during the fieldwork period. The participant started to rapidly deteriorate after receiving chemotherapy, which induced persistent, volatile vomiting. She was hospitalised to control her severe side effects, yet after 3 weeks of hospitalisation she was still unable to keep any food down and started to refuse all nourishment, demanding to be discharged from hospital. The participants’ refusal to eat and demands to be discharged acquired a political dimension similar to that of a hunger strike. The participant’s actions were directed to fulfil her desire to leave the hospital and return to her country. She became very frustrated with medical personnel trying to convince her to eat and showed this through violent emotional outbursts that were construed by attending staff as her being difficult and non-compliant in her own recovery. However, her refusal to eat was part of her acceptance of death, as was her refusal to continue chemotherapy and her desire to live out the remainder of her life on her own terms. This was also a quality-of-life decision. With her acceptance and demand for agency, this participant actively entered the dying phase. The participant’s strong emotional outburst upset attending staff, especially nurses. When questioned why the participant’s actions were upsetting for them, they replied that this kind of behaviour did not belong in a hospital, which they said should be a calm and quiet place for people to recover. The emotional responses were deemed to upset this harmony and calmness and were considered unacceptable. Thus at this time there were limits on the way death and dying could be dealt with in the hospitals that have poor compatibility with Yamatji culture. Yamatji express their discontent and grieving through strong emotional displays. During the research period Yamatji women were observed wailing loudly at the death of a relative and during the funeral, pounding their chest with their fists, and even tearing at their own hair.
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Physical limitations of the hospital space also played a part in the preference to die at home. These included the small size of the hospital rooms, which do not allow large numbers of visitors at the same time, and a lack of privacy due to the physical layout of the hospital rooms: ‘... the rooms are often too small for when family visits. They [Yamatji] have large families and prefer to sit outside in the garden during visiting hours. We only have two single rooms and having another person in the room doesn’t allow for much privacy, that’s why they also prefer the garden.’ (Participant 1)
The need for privacy can be explained by the culturally specific practice of passing on sacred information to particular family members prior to the death of the individual. The chance to remain with family was seen as being particularly important by surviving family members: ‘I got to spend the last few days with my mom. Even though she was sick, she was happier at home than in hospital and we could all stay with her and even cuddle up to her in bed and nobody would tell us off.’ (Participant 12)
Similarly, providing comfort was seen as being easier in familiar surroundings: ‘It was just so much easier to get Mom her favourite things whether that was food or just a silly jumper and we could all take turns sitting with her.’ (Participant 8)
Another culturally specific practice that inhibited Yamatji uptake of hospital-based palliative care services was the ritual cleansing of physical spaces where death has occurred. This is usually accomplished by performing a smoking ceremony through which negative energies, which would contribute to another patient’s failure to overcome a disease, are thought to be dispelled. This, of course, is highly problematic in a hospital setting that has legal sanitation and hygiene standards to adhere to.
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Use of home-based palliative care services Geographical distance was reported to be a major obstacle in providing adequate homebased palliative care services. Interview data from local medical service providers indicated that remote communities were serviced through mobile units that visited the communities once or twice a month, depending on distance. Multiple
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health-care provider participants noted that accessing people at home is difficult, especially when these homes are greatly isolated. This geographical isolation was said to often be complicated during heavy rainfall, which can flood roads and effectively block off access to these isolated homesteads. Other obstacles were also mentioned in interviews with service providers. One Yamatji healthcare worker and one palliative care coordinator stressed the lack of trained medical personnel to facilitate adequate delivery of home-based palliative care services, particularly in rural areas.
❛Yamatji strongly associate palliative care services with death and end-of-life care.❜
‘We generally need more trained staff to provide services to remote communities, but there are not enough trained nurses to go around.’ (Participant 3)
Compounding the issue of accessing home-based palliative care services was a general lack of awareness among Yamatji breast cancer patients of which organisation to contact to receive said services. ‘I have a lot of women calling me because they don’t know what services they can claim. They don’t know that they can get a bed at home or have a nurse come and change their dressing. Most of the time I tell them who to ring up and help them with the paperwork.’ (Participant 5)
Discussion
Death and dying as culturally mediated processes Rosenwax and McNamara (2006) investigated access to specialist palliative care in Western Australia and found that palliative care is mostly available to cancer patients, with limited availability to indigenous peoples. Although both indigenous and non-indigenous cancer patients receive palliative care, according to Rosenwax and McNamara’s (2006) findings, indigenous people receive it more often as in-patients rather than in the home. Indigenous people experiencing non-malignant conditions were ‘the worstserviced of any group studied, with only 16 of the 182 people who died of these conditions receiving any SPC [specialist palliative care]’ (Rosenwax and McNamara, 2006:442). Medical centres in Yamatji country are mostly located along the coastline, with in-land communities having very restricted access to medical services. Only five of the medical centres located in Yamatji country offer palliative care services, which are predominately facilitated through visiting specialists and telehealth. The specialist
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palliative care unit at Geraldton Regional Hospital provides the only continuously accessible specialist palliative care services in the region. The data showed continued misconception among Yamatji of palliative care services as purely end-of-life care. Consequently, Yamatji access palliative care services primarily for endof-life care, and they prefer home-based palliative care services primarily owing to the vital importance they place on dying in country. As Willis (1999: 434) pointed out, ‘[...] dying is a culturally mediated part of a specific way of living’, and is therefore individualistic in terms of what is seen as acceptable by the patient and their family. It is not only Yamatji who prefer to die at home: research has shown that home is the preferred place of dying for the majority of patients (Higginson and Sen-Gupta, 2000; Tang, 2003; Proulx and Jacelon, 2004; Yao et al, 2007). However, few patients fulfil this desire (Higginson and Sen-Gupta, 2000; Tang, 2003). This is due to several limiting factors such as a lack of technical expertise and personnel, limited support networks, and carer fatigue (Hale, 2005). The importance of dying in country was not the only reason why home-based care was preferred. Yao et al (2007: 498) stated that ‘familiar surroundings and relationships confirm the importance of the dying person and provide a sense of security, belonging, and continuing identity’. Being able to receive home-based care is not only about the dying person, but also about the living relatives. Gathering family members when death becomes imminent surpasses emotional comfort as there may also be a need to pass on valuable and sacred information to designated family members (McGrath, 2007). Seale (1998: 180) stated that wills and life insurance policies are often ‘indicators of the extent to which people planned for their deaths’. Kehl (2006: 281) mentioned wills and attending to legal matters as providing a sense of closure. The use of these legal documents is limited among Yamatji. Consequently, gathering family provides a sense of closure for Yamatji, something that has previously been identified as an attribute of a ‘good death’ (Kehl, 2006). Another attribute of a good death identified by Kehl (2006) was patient control. A certain degree of control is rendered to the patient in the ‘do not resuscitate’ forms and the possibility for selfdischarge. Other forms of control over the dying process can be the refusal of food and/or hydration, as demonstrated by the individual who refused to eat as part of her dying trajectory. Patients can only assert control over their dying trajectories and treatment options when they
receive the information needed to make informed decisions. As the data indicated, Yamatji are often very frustrated when it is perceived that attending physicians are not informing patients and family members when treatments are failing. Zimmermann (2007) analysed the importance of denial in service provision and uptake. Part of her argument was that the manner in which physicians do or do not tell their patients about a terminal illness is intrinsically linked to their own attitudes. For example, the physician might want the patient to uphold a level of hope or the physician themselves may be uncomfortable talking about death (Proulx and Jacelon, 2004). While this is very important, further discussion is beyond the scope of this paper. The expression of emotions and forms of grieving are culturally mediated and embedded. As described, wailing, chest pounding, and at times tearing out hair are all part of Aboriginal expressions of grief. Anthropological data from other regions and Aboriginal peoples supports these findings (Magowan, 2001; Glaskin et al, 2008; Musharbash, 2008; McCullough, 2012).
Limitations As with all qualitative research, the sample size of this study was small compared with quantitative approaches, although the strength of qualitative research lies in its potential for contextualisation. All the participants had prior experience with breast cancer, either personally or through relatives, and so their range of experience was quite narrow. In addition, the use of snowball sampling means that all of the participants were familiar with each other. Owing to the intricate social webs, this familiarity might have contributed to participants voicing concerns similar to those of their acquaintances to avoid social conflict; however, the likelihood of this is small. The participants were predominantly female as a result of the overall focus for data collection on breast cancer experiences.
Future directions There is a great need for future research in the area of Australian Aboriginal perceptions of palliative care. It has generally been acknowledged throughout Western Australia that palliative care is greatly underutilised and that this is often due to misconceptions of what palliative care entails. A next step could be to evaluate whether a change in perceptions and attitudes among Western Australian Aboriginal peoples is visible after educational interventions. More research is also necessary in the area of home-based palliative care services. There is a great need for
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evaluation of service use by Australian Aboriginal people throughout Western Australia.
Conclusion Underutilisation of palliative care services among Yamatji women with breast cancer results from misperceptions about what palliative care entails, institutionalisation of death, cultural and structural barriers to adequate service provision, and active entering into the dying phase. Education and outreach programmes aiming to eradicate Yamatji misperceptions of palliative care services would be a beginning, but alone they would not be sufficient to increase Yamatji use of palliative care services. Although a clearer understanding of what palliative care services entail and when they should be accessed would help Yamatji to no longer view palliative care as solely pertaining to end-of-life care, it would not remove cultural and/or structural barriers. Hospital-based services would still remain mainly accessible to Yamatji and inadequate or inappropriate to their needs. Expanding and strengthening home-based palliative care services throughout Yamatji country with consideration of the current culturespecific barriers to utilisation should greatly enhance Yamatji uptake of palliative care services if combined with education programmes. I● JPN Acknowledgments The author is indebted to the Yamatji participants and community, as well as to palliative care service providers in Yamatji country for their full support of the study. The author also thanks reviewers of the first draft for their helpful comments and several members of staff of the School of Anthropology and Conservation of the University of Kent for their continued support. An oral presentation of the paper was given at the Society of Medical Anthropology meeting in Tarragona, Spain, in 2013.
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Declaration of interests This work had no external sources of funding. The author has no conflicts of interest to declare. Australian Bureau of Statistics (2007) Census of Population and Housing Indigenous Profile, Geraldton (Indigenous) Region – WA, Cat. No. 2002.0. Australian Bureau of Statistics, Canberra Berndt R (1979) Traditional aboriginal life in Western Australia: as it was and is. In: Berndt R, Berndt C, eds. Aborigines of the West: Their Past and Their Present. University of Western Australia Press, Perth: 3–27 Bessarab D, Ng’andu B (2010) Yarning about yarning as a legitimate method in indigenous research. Int J Crit Indigenous Stud 3(1): 37–50 Felton-Busch C (2009) Birthing on country: an elusive ideal? Contemp Nurse 33(2): 161–2 Glaser BG, Strauss AL (1967) The Discovery of Grounded Theory: Strategies for Qualitative Research. Aldine Publishing Company, Chicago Glaser BG, Strauss AL (1970) Anguish: A Case History of a Dying Trajectory. Sociology Press, Mill Valley, Ca Glaskin K, Tonkinson M, Musharbash Y, Burbank V, eds (2008) Mortality, Mourning and Mortuary Practices in Indigenous Australia. Ashgate, Farham
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Hale J (2005) Palliative Care in Western Australia. Final Report December 2005. www.healthnetworks.health. wa.gov.au/cancer/docs/pall%20care%20report%20final. Pdf (accessed 28 July 2014) Higginson IJ, Sen-Gupta GJ (2000) Place of care in advanced cancer: a qualitative systematic literature review of patient preferences. J Palliat Med 3(3): 287–300 Kehl K (2006) Moving toward peace: an analysis of the concept of a good death. Am J Hosp Palliat Care 23(4): 277–86 Magowan F (2001) Crying to remember: reproducing personhood and community. In: Attwood B, Magowan F, eds. Telling Stories: Indigenous History and Memory in Australia and New Zealand. Allen and Unwin, Sydney: 41–60 McCullough M (2012) Entangled bodies: structural violence, well-being and humor in australian indigenous health. Anthropology News 53(3): 9–10 McGrath P (2007) ‘I don’t want to be in that big city; this is my country here’: research findings on Aboriginal peoples’ preference to die at home. Aust J Rural Health 15(4): 264–8 McGrath P, Holewa H, Kail-Buckley S (2007a) “They should come out here ...”: research findings on lack of local palliative care services for Australian aboriginal people. Am J Hosp Palliat Care 24(2): 105–13 McGrath P, Holewa H, McGrath Z (2007b) Practical problems for Aboriginal palliative care service provision in rural and remote areas: equipment, power and travel issues. Collegian 14(3): 21–6 McNamara B, Waddell C, Colvin M (1994) The institutionalization of the good death. Soc Sci Med 39(11): 1501–8 Musharbash Y (2008) Yuendumu Everyday: Contemporary Life in Remote Aboriginal Australia. Aboriginal Studies Press, Canberra Myers FR (1986) Pintupi Country, Pintupi Self: Sentiment, Place, and Politics Among Western Desert Aborigines. Smithsonian Institution Press, Washington DC Poirier S (2005) A World of Relationships: Itineraries, Dreams, and Events in The Australian Western Desert. University of Toronto Press, Toronto Proulx K, Jacelon C (2004) Dying with dignity: the good patient versus the good death. Am J Hosp Palliat Care 21(2): 116–20 Prout S (2009) Security and belonging: reconceptualising aboriginal spatial mobilities in Yamatji country, Western Australia. Mobilities 4(2): 177–202 Rosenwax LK, McNamara BA (2006) Who receives specialist palliative care in Western Australia - and who misses out. Palliat Med 20(4): 439–45 Seale C (1998) Constructing Death: The Sociology of Dying And Bereavement. Cambridge University Press, Cambridge, England Tang ST (2003) When death is imminent: where terminally ill patients with cancer prefer to die and why. Cancer Nurs 26(3): 245–51 Tong E, McGraw SA, Dobihal E, Baggish R, Cherlin E, Bradley EH (2003) What is a good death? Minority and non-minority perspectives. J Palliat Care 19(3): 168–75 WA Cancer & Palliative Care Network (2008) Rural Palliative Care Model In Western Australia. www.Healthnetworks.Health.Wa.Gov.Au/modelsofcare/docs/rural_palliative_model_of_care.Pdf (accessed 28 July 2014) Willis J (1999) Dying in country: implications of culture in the delivery of palliative care in indigenous Australian communities. Anthropol Med 6(9): 423–36 World Health Organization (2012) WHO definition of palliative care. www.Who.Int/cancer/palliative/definition/en/ (accessed 28 July 2014) Yao CA, Hu WY, Lai YF, Cheng SY, Chen CY, Chiu TY (2007) Does dying at home influence the good death of terminal cancer patients? J Pain Symptom Manage 34(5): 497–504 Zimmermann C (2007) Death denial: obstacle or instrument for palliative care? An analysis of clinical literature. Sociol Health Illn 29(2): 297–314
❛Underutilisation of palliative care services among Yamatji ... results from misperceptions about what palliative care entails, institutionalisation of death, cultural and structural barriers to adequate service provision, and active entering into the dying phase.❜
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Exploring Yamatji perceptions and use of palliative care: an ethnographic study Melanie Dembinsky
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he scope of palliative care has significantly changed since its inception in the 1960s and 1970s (Kehl, 2006). Palliative care as a specialty has ‘sought to detach itself from an exclusive focus on terminal illness by redefining itself to incorporate almost all care that is not directed at cure’ (Seale, 1998: 113). Palliative care service provision in Western Australia is oriented according to the World Health Organization (WHO) conceptualisation of palliative care (WA Cancer & Palliative Care Network, 2008). The WHO (2012) defines palliative care as ‘an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual’. McNamara et al (1994) noted a high degree of institutionalisation in the concept of the ‘good death’ in Western Australian hospice care, characterising it as lacking in spontaneity, flexibility, and individuality. Since Glaser and Strauss’s (1970) definition of a good death as calm and orderly dying framed in planned dying trajectories, major progress has been made in this area (Tong et al, 2003; Proulx and Jacelon, 2004; Kehl, 2006). In 1997, an Institute of Medicine report on end-of-life care defined a good death as one that is ‘free from avoidable distress and suffering for patients, families, and caregivers; in general accord with patients’ and families’ wishes; and reasonably consistent with clinical, cultural, and ethical standards’ (Kehl, 2006: 277). This definition of the good death informs Western Australian palliative care practice and service delivery (WA Cancer & Palliative Care Network, 2008). Despite these advances in understanding, implementation remains challenging in an aboriginal context, especially with regard to flexibility and individuality. Palliative care services are greatly underutilised by indigenous peoples in Western Australia,
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Abstract
Background: The Yamatji people comprise several Aboriginal groups living in the Midwest region of Western Australia. Palliative care remains underutilised among Aboriginal groups, but little is known about Yamatji people’s thoughts about and experiences of accessing services. Aim: As part of a broader study focusing on Yamatji’s lived experiences of breast cancer, this study analysed their perceptions and use of palliative care services. Methods: The study used grounded theory and 28 in-depth interviews with Aboriginal and non-Aboriginal health-care providers as well as Yamatji patients, carers, and families. Results: Palliative care services are underutilised by Yamatji breast cancer patients. The reasons for this include misperceptions about what palliative care entails, cultural and structural barriers to adequate service provision, and the inflexibility of institutionalised death. Conclusions: Efforts to raise awareness among Yamatji that palliative care is broader than end-of-life care would be a step in the right direction, but would not be sufficient to significantly increase uptake among Yamatji if culturally specific perceptions of death and dying are not included in the dialogue. Key words: Palliative care l Breast cancer l Aboriginal Australia l ‘Good’ death l Cultural security
despite these populations having higher mortality for various diseases, including breast cancer (WA Cancer & Palliative Care Network, 2008). This overall trend is apparent among Yamatji women in the Midwest region of the state. ‘Yamatji’ is a term from the Wadjari language referring to Aboriginal peoples of the Midwest region of Western Australia. The term is a result of the fusing of the separate social identities of several local Aboriginal groups (Berndt, 1979). Yamatji use of the word ‘country’ refers to specific geographical areas and sites that are intrinsically linked to Yamatji personhood and identity. An individual’s ‘country’ is determined through numerous factors such as their birthplace, their parents’ place of death, sites in which the individual has experienced significant life stages or events (e.g. initiation sites), and geographical areas where a large part of the
Melanie Dembinsky, Lecturer in Social Anthropology, School of Anthropology and Conservation, Marlowe Building, University of Kent, Canterbury, CT2 7NR, England Email: M.Dembinsky@ kent.ac.uk
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that palliative care as a part of breast cancer trajectories for participants was a continuous and analytically relevant theme. Therefore, the aim of the present study was to explore perceptions and use of palliative care services in Yamatji country.
WESTERN AUSTRALIA Case Study Region
100 200 km
Methods
Port Hedland
Jigalong
Newman Burringurrah Carnarvon Yulga Jinna
YAMATJI
Meekatharra
Wiluna
Cue Yalgoo Mt Magnet Mullewa Geraldton
Laverton
Leonora Kalgoorlie-Boulder
PERTH
ATSIC region Aboriginal communities
Figure 1. Yamatji land
Ethical approval
individual’s life has been spent. The intricacies are very complex and warrant a paper in their own right (Myers, 1986; Poirier, 2005; FeltonBusch, 2009). Yamatji land encompasses roughly 415 330 km² of Western Australia, with a total population of around 54 500 (Australian Bureau of Statistics, 2007) (Figure 1). The majority of the area is scarcely populated, with a few rural centres along the coastline. Among these rural towns, Geraldton is the largest and most important for Yamatji. As Prout (2009: 181) explained: ‘Geraldton is a common reference point for Aboriginal people throughout Yamatji country because of the more extensive range of public and retail services available there.’ Prior to this study, nothing had been published specifically about Yamatji use of palliative care services. Studies have examined palliative care use in Western Australia, notably McGrath et al (2007a; 2007b) and Rosenwax and McNamara (2006). These studies distinguished between indigenous and non-indigenous usage and perceptions.
Ethical approval for this research was granted by the University of Kent’s Research Ethics Committee, the Western Australian Aboriginal Health Information and Ethics Committee, Geraldton Regional Aboriginal Medical Services, and participating Yamatji communities.
Aim
The majority of participants were Yamatji women diagnosed with breast cancer, their kin carers, and family members who did not also function as carers. Additionally, five Yamatji health workers and/or indigenous programme officers of public health institutions and three
This study was part of a doctoral thesis in medical anthropology examining lived experiences of breast cancer among Yamatji women in Yamatji country. A preliminary analysis of data collected for the purpose of the thesis revealed
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The data presented here is based on long-term empirical research that began in 2010 as part of doctoral investigations into Yamatji experiences with breast cancer. As such, it is part of a broader endeavour that is ongoing even after the completion of the doctoral thesis. Using a combined methodology of grounded theory and ethnographic immersion allowed a high level of flexibility and adjustment in research trajectories. Grounded theory, as defined by Glaser and Strauss (1967: 2), is ‘the discovery of theory from data systematically obtained from social research’. Long-term ethnographic immersion, living among participants and in similar conditions, added the capacity to incorporate daily experiences of illness trajectories that surpassed medical interventions and interactions.
Recruitment Participants were recruited through Geraldton Regional Medical Services and the Indigenous Women’s Support Network. Initial contact with potential participants was made through local Yamatji women working in either of these institutions. This was necessary to follow local social etiquette and to explain the researcher’s presence in the community. Cultural mentors stood as substitute kin to vouch for the author’s character and trustworthiness, which was crucial to gaining access to participants. Once rapport had been established between the author and five key members of the Indigenous Women’s Support Network, further participants were recruited through snowball sampling.
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non-Aboriginal palliative care managers and/or nurses were included in the sample (Table 1). Owing to strict gender divisions among Yamatji and the broader focus on breast cancer experiences, only two male participants were included. The youngest participants were in their early 30s and the oldest in their late 80s (Table 2). Identifying characteristics and names have been altered to ensure anonymity and confidentiality, except for participants whose names have been mentioned in other publically available documents. Participants have been presented with the textual analysis of situations and events pertaining to their stories when requested.
Data collection The majority of the data was collected during 25 informal interviews and participant observations. These permitted easier information flow than structured interviews, although the latter were also used. Three formal interviews using questions that arose from previously gathered data were conducted with medical personnel. The interviews lasted from 30 minutes up to 3 hours, with the formal interviews being shorter. The informal, unstructured interview is akin to the Aboriginal concept of ‘yarning’. Different types of yarning have been eloquently explained by Bessarab and Ng’andu (2010) and described as social yarning, research topic yarning, therapeutic yarning, and collaborative yarning. The type most relevant to research methods is research topic yarning, the sole purpose of which is ‘to gather information through participants’ stories that are related to the research topic’ (Bessarab and Ng’andu, 2010: 40). To yarn means to communicate following certain rules. Yamatji yarn when they want to pass on information through talking:
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‘Through the social yarn certain conventions and rules are established which sets the boundaries of how the yarn will take place and demands from the researcher an accounting of who they are in the research process. Because yarns are not fixed and can be messy; they are constantly negotiated between the researcher and participant in the process of making meaning and exploring the research topic.’ (Bessarab and Ng’andu, 2010: 47)
In addition, yarning requires and sets out ‘different rules, language and protocols for conducting conversations’ (Bessarab and Ng’andu, 2010: 38). These rules are generally known by Yamatji. Yarning conveys meaning with precision because of the inclusion of tone, language, body posture,
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Table 1. Participant role and indigenous status Aboriginal
Non-Aboriginal
Total
Health professional
5
3
8
Patient
10
0
10
Kin carer
4
0
4
Kin non-carer
6
0
6
Total
25
3
28
Table 2. Participant age and gender Age
Male
Female
Total
30–40
0
5
5
40–50
1
9
10
50–60
0
5
5
60–70
1
2
3
70–80
0
3
3
>80
0
2
2
Total
2
26
28
and overall body language, while at the same time adhering to unique communication styles expressed through semantics.
Data analysis The interviews were recorded where possible, and then transcribed, coded, and analysed thematically using NVivo 9 (QSR International), a qualitative data analysis programme. Data analysis started with line-by-line reading of the transcripts to code the data into themes, and these were then sorted and stored as ‘free nodes’ using NVivo 9. When recording was not possible, notes were taken either during the interview or immediately after the interview was completed. Interview notes were also thematically analysed using the themes identified during the transcript coding process.
Findings
Yamatji perceptions of palliative care and breast cancer Yamatji strongly associate palliative care services with death and end-of-life care. This was substantiated by a Yamatji health professional: ‘... palliative care is seen as end-of-life care by the Aborigines here.’ (Participant 2)
Breast cancer is still seen as a death sentence among Yamatji. During the initial research period from 2010 to 2011, a participant’s mother received a breast cancer diagnosis. The mother started to gather her family around, with the news of her expected death travelling along kinship lines,
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being passed on from one individual to another starting with her daughters. Gathering the family was about more than just being able to say goodbye—the mother wanted to set her affairs in order. According to the daughter, her mother ‘still had so much to do and wasn’t quite ready yet’. This statement and the mother’s actions clearly indicate that the breast cancer diagnosis was equated with impending death and the need to make appropriate preparations. According to the study participants, part of this preparation pertained to the redistribution of personal possessions, as wills and other legal documents such as life insurance policies are largely absent among Yamatji. This absence of legal documentation makes it necessary to orally pass on preferences for distributing personal effects.
Use of hospital-based palliative care services Within Yamatji country, there are two main hospitals that provide hospital-based palliative care services, both of which are located in the town of Geraldton. A palliative care unit manager from one of these institutions indicated that there is low uptake of services among Yamatji: ‘We do not have a lot of Aboriginal patients at the moment, and generally. We had some over the years, but they prefer to stay at home.’ (Participant 1)
The data gathered by the researcher included reports of geographical, logistical, and cultural barriers to Yamatji accessing hospital-based palliative care services. Not being able to die ‘in country’ was the biggest issue associated with using hospital-based palliative care services: ‘... they [doctors] don’t tell us in time when the treatment is not working, and then people die alone at the hospital far away from their country without anyone they know when they die. It’s disgusting!’ (Participant 2)
The anger, frustration, and disappointment evident in this statement point to the importance of country and family. Yamatji believe that if a person dies outside of their country, their spirit is doomed to roam eternally. Consequently, the life– death–life continuum is not completed and the spirit remains in a constant state of liminality as it is unable to reunite with the ancestral essence present in country. Other statements supported the importance of dying in country:
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‘We got mom home because she wanted to die in her home country.’ (Participant 3) ‘We took mom out bush, so she could die peacefully.’ (Participant 7)
Allowing Yamatji to die in country is not just culturally secure service delivery but also a form of closure for Yamatji patients. Specific ceremonies and practices surrounding death were also mentioned by participants, as was the importance of acknowledging life–death–life as a continuum. Another example of the strong desire of Yamatji to die in country was provided by the participant who was diagnosed during the fieldwork period. The participant started to rapidly deteriorate after receiving chemotherapy, which induced persistent, volatile vomiting. She was hospitalised to control her severe side effects, yet after 3 weeks of hospitalisation she was still unable to keep any food down and started to refuse all nourishment, demanding to be discharged from hospital. The participants’ refusal to eat and demands to be discharged acquired a political dimension similar to that of a hunger strike. The participant’s actions were directed to fulfil her desire to leave the hospital and return to her country. She became very frustrated with medical personnel trying to convince her to eat and showed this through violent emotional outbursts that were construed by attending staff as her being difficult and non-compliant in her own recovery. However, her refusal to eat was part of her acceptance of death, as was her refusal to continue chemotherapy and her desire to live out the remainder of her life on her own terms. This was also a quality-of-life decision. With her acceptance and demand for agency, this participant actively entered the dying phase. The participant’s strong emotional outburst upset attending staff, especially nurses. When questioned why the participant’s actions were upsetting for them, they replied that this kind of behaviour did not belong in a hospital, which they said should be a calm and quiet place for people to recover. The emotional responses were deemed to upset this harmony and calmness and were considered unacceptable. Thus at this time there were limits on the way death and dying could be dealt with in the hospitals that have poor compatibility with Yamatji culture. Yamatji express their discontent and grieving through strong emotional displays. During the research period Yamatji women were observed wailing loudly at the death of a relative and during the funeral, pounding their chest with their fists, and even tearing at their own hair.
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Physical limitations of the hospital space also played a part in the preference to die at home. These included the small size of the hospital rooms, which do not allow large numbers of visitors at the same time, and a lack of privacy due to the physical layout of the hospital rooms: ‘... the rooms are often too small for when family visits. They [Yamatji] have large families and prefer to sit outside in the garden during visiting hours. We only have two single rooms and having another person in the room doesn’t allow for much privacy, that’s why they also prefer the garden.’ (Participant 1)
The need for privacy can be explained by the culturally specific practice of passing on sacred information to particular family members prior to the death of the individual. The chance to remain with family was seen as being particularly important by surviving family members: ‘I got to spend the last few days with my mom. Even though she was sick, she was happier at home than in hospital and we could all stay with her and even cuddle up to her in bed and nobody would tell us off.’ (Participant 12)
Similarly, providing comfort was seen as being easier in familiar surroundings: ‘It was just so much easier to get Mom her favourite things whether that was food or just a silly jumper and we could all take turns sitting with her.’ (Participant 8)
Another culturally specific practice that inhibited Yamatji uptake of hospital-based palliative care services was the ritual cleansing of physical spaces where death has occurred. This is usually accomplished by performing a smoking ceremony through which negative energies, which would contribute to another patient’s failure to overcome a disease, are thought to be dispelled. This, of course, is highly problematic in a hospital setting that has legal sanitation and hygiene standards to adhere to.
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Use of home-based palliative care services Geographical distance was reported to be a major obstacle in providing adequate homebased palliative care services. Interview data from local medical service providers indicated that remote communities were serviced through mobile units that visited the communities once or twice a month, depending on distance. Multiple
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health-care provider participants noted that accessing people at home is difficult, especially when these homes are greatly isolated. This geographical isolation was said to often be complicated during heavy rainfall, which can flood roads and effectively block off access to these isolated homesteads. Other obstacles were also mentioned in interviews with service providers. One Yamatji healthcare worker and one palliative care coordinator stressed the lack of trained medical personnel to facilitate adequate delivery of home-based palliative care services, particularly in rural areas.
❛Yamatji strongly associate palliative care services with death and end-of-life care.❜
‘We generally need more trained staff to provide services to remote communities, but there are not enough trained nurses to go around.’ (Participant 3)
Compounding the issue of accessing home-based palliative care services was a general lack of awareness among Yamatji breast cancer patients of which organisation to contact to receive said services. ‘I have a lot of women calling me because they don’t know what services they can claim. They don’t know that they can get a bed at home or have a nurse come and change their dressing. Most of the time I tell them who to ring up and help them with the paperwork.’ (Participant 5)
Discussion
Death and dying as culturally mediated processes Rosenwax and McNamara (2006) investigated access to specialist palliative care in Western Australia and found that palliative care is mostly available to cancer patients, with limited availability to indigenous peoples. Although both indigenous and non-indigenous cancer patients receive palliative care, according to Rosenwax and McNamara’s (2006) findings, indigenous people receive it more often as in-patients rather than in the home. Indigenous people experiencing non-malignant conditions were ‘the worstserviced of any group studied, with only 16 of the 182 people who died of these conditions receiving any SPC [specialist palliative care]’ (Rosenwax and McNamara, 2006:442). Medical centres in Yamatji country are mostly located along the coastline, with in-land communities having very restricted access to medical services. Only five of the medical centres located in Yamatji country offer palliative care services, which are predominately facilitated through visiting specialists and telehealth. The specialist
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palliative care unit at Geraldton Regional Hospital provides the only continuously accessible specialist palliative care services in the region. The data showed continued misconception among Yamatji of palliative care services as purely end-of-life care. Consequently, Yamatji access palliative care services primarily for endof-life care, and they prefer home-based palliative care services primarily owing to the vital importance they place on dying in country. As Willis (1999: 434) pointed out, ‘[...] dying is a culturally mediated part of a specific way of living’, and is therefore individualistic in terms of what is seen as acceptable by the patient and their family. It is not only Yamatji who prefer to die at home: research has shown that home is the preferred place of dying for the majority of patients (Higginson and Sen-Gupta, 2000; Tang, 2003; Proulx and Jacelon, 2004; Yao et al, 2007). However, few patients fulfil this desire (Higginson and Sen-Gupta, 2000; Tang, 2003). This is due to several limiting factors such as a lack of technical expertise and personnel, limited support networks, and carer fatigue (Hale, 2005). The importance of dying in country was not the only reason why home-based care was preferred. Yao et al (2007: 498) stated that ‘familiar surroundings and relationships confirm the importance of the dying person and provide a sense of security, belonging, and continuing identity’. Being able to receive home-based care is not only about the dying person, but also about the living relatives. Gathering family members when death becomes imminent surpasses emotional comfort as there may also be a need to pass on valuable and sacred information to designated family members (McGrath, 2007). Seale (1998: 180) stated that wills and life insurance policies are often ‘indicators of the extent to which people planned for their deaths’. Kehl (2006: 281) mentioned wills and attending to legal matters as providing a sense of closure. The use of these legal documents is limited among Yamatji. Consequently, gathering family provides a sense of closure for Yamatji, something that has previously been identified as an attribute of a ‘good death’ (Kehl, 2006). Another attribute of a good death identified by Kehl (2006) was patient control. A certain degree of control is rendered to the patient in the ‘do not resuscitate’ forms and the possibility for selfdischarge. Other forms of control over the dying process can be the refusal of food and/or hydration, as demonstrated by the individual who refused to eat as part of her dying trajectory. Patients can only assert control over their dying trajectories and treatment options when they
receive the information needed to make informed decisions. As the data indicated, Yamatji are often very frustrated when it is perceived that attending physicians are not informing patients and family members when treatments are failing. Zimmermann (2007) analysed the importance of denial in service provision and uptake. Part of her argument was that the manner in which physicians do or do not tell their patients about a terminal illness is intrinsically linked to their own attitudes. For example, the physician might want the patient to uphold a level of hope or the physician themselves may be uncomfortable talking about death (Proulx and Jacelon, 2004). While this is very important, further discussion is beyond the scope of this paper. The expression of emotions and forms of grieving are culturally mediated and embedded. As described, wailing, chest pounding, and at times tearing out hair are all part of Aboriginal expressions of grief. Anthropological data from other regions and Aboriginal peoples supports these findings (Magowan, 2001; Glaskin et al, 2008; Musharbash, 2008; McCullough, 2012).
Limitations As with all qualitative research, the sample size of this study was small compared with quantitative approaches, although the strength of qualitative research lies in its potential for contextualisation. All the participants had prior experience with breast cancer, either personally or through relatives, and so their range of experience was quite narrow. In addition, the use of snowball sampling means that all of the participants were familiar with each other. Owing to the intricate social webs, this familiarity might have contributed to participants voicing concerns similar to those of their acquaintances to avoid social conflict; however, the likelihood of this is small. The participants were predominantly female as a result of the overall focus for data collection on breast cancer experiences.
Future directions There is a great need for future research in the area of Australian Aboriginal perceptions of palliative care. It has generally been acknowledged throughout Western Australia that palliative care is greatly underutilised and that this is often due to misconceptions of what palliative care entails. A next step could be to evaluate whether a change in perceptions and attitudes among Western Australian Aboriginal peoples is visible after educational interventions. More research is also necessary in the area of home-based palliative care services. There is a great need for
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evaluation of service use by Australian Aboriginal people throughout Western Australia.
Conclusion Underutilisation of palliative care services among Yamatji women with breast cancer results from misperceptions about what palliative care entails, institutionalisation of death, cultural and structural barriers to adequate service provision, and active entering into the dying phase. Education and outreach programmes aiming to eradicate Yamatji misperceptions of palliative care services would be a beginning, but alone they would not be sufficient to increase Yamatji use of palliative care services. Although a clearer understanding of what palliative care services entail and when they should be accessed would help Yamatji to no longer view palliative care as solely pertaining to end-of-life care, it would not remove cultural and/or structural barriers. Hospital-based services would still remain mainly accessible to Yamatji and inadequate or inappropriate to their needs. Expanding and strengthening home-based palliative care services throughout Yamatji country with consideration of the current culturespecific barriers to utilisation should greatly enhance Yamatji uptake of palliative care services if combined with education programmes. I● JPN Acknowledgments The author is indebted to the Yamatji participants and community, as well as to palliative care service providers in Yamatji country for their full support of the study. The author also thanks reviewers of the first draft for their helpful comments and several members of staff of the School of Anthropology and Conservation of the University of Kent for their continued support. An oral presentation of the paper was given at the Society of Medical Anthropology meeting in Tarragona, Spain, in 2013.
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Declaration of interests This work had no external sources of funding. The author has no conflicts of interest to declare. Australian Bureau of Statistics (2007) Census of Population and Housing Indigenous Profile, Geraldton (Indigenous) Region – WA, Cat. No. 2002.0. Australian Bureau of Statistics, Canberra Berndt R (1979) Traditional aboriginal life in Western Australia: as it was and is. In: Berndt R, Berndt C, eds. Aborigines of the West: Their Past and Their Present. University of Western Australia Press, Perth: 3–27 Bessarab D, Ng’andu B (2010) Yarning about yarning as a legitimate method in indigenous research. Int J Crit Indigenous Stud 3(1): 37–50 Felton-Busch C (2009) Birthing on country: an elusive ideal? Contemp Nurse 33(2): 161–2 Glaser BG, Strauss AL (1967) The Discovery of Grounded Theory: Strategies for Qualitative Research. Aldine Publishing Company, Chicago Glaser BG, Strauss AL (1970) Anguish: A Case History of a Dying Trajectory. Sociology Press, Mill Valley, Ca Glaskin K, Tonkinson M, Musharbash Y, Burbank V, eds (2008) Mortality, Mourning and Mortuary Practices in Indigenous Australia. Ashgate, Farham
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Hale J (2005) Palliative Care in Western Australia. Final Report December 2005. www.healthnetworks.health. wa.gov.au/cancer/docs/pall%20care%20report%20final. Pdf (accessed 28 July 2014) Higginson IJ, Sen-Gupta GJ (2000) Place of care in advanced cancer: a qualitative systematic literature review of patient preferences. J Palliat Med 3(3): 287–300 Kehl K (2006) Moving toward peace: an analysis of the concept of a good death. Am J Hosp Palliat Care 23(4): 277–86 Magowan F (2001) Crying to remember: reproducing personhood and community. In: Attwood B, Magowan F, eds. Telling Stories: Indigenous History and Memory in Australia and New Zealand. Allen and Unwin, Sydney: 41–60 McCullough M (2012) Entangled bodies: structural violence, well-being and humor in australian indigenous health. Anthropology News 53(3): 9–10 McGrath P (2007) ‘I don’t want to be in that big city; this is my country here’: research findings on Aboriginal peoples’ preference to die at home. Aust J Rural Health 15(4): 264–8 McGrath P, Holewa H, Kail-Buckley S (2007a) “They should come out here ...”: research findings on lack of local palliative care services for Australian aboriginal people. Am J Hosp Palliat Care 24(2): 105–13 McGrath P, Holewa H, McGrath Z (2007b) Practical problems for Aboriginal palliative care service provision in rural and remote areas: equipment, power and travel issues. Collegian 14(3): 21–6 McNamara B, Waddell C, Colvin M (1994) The institutionalization of the good death. Soc Sci Med 39(11): 1501–8 Musharbash Y (2008) Yuendumu Everyday: Contemporary Life in Remote Aboriginal Australia. Aboriginal Studies Press, Canberra Myers FR (1986) Pintupi Country, Pintupi Self: Sentiment, Place, and Politics Among Western Desert Aborigines. Smithsonian Institution Press, Washington DC Poirier S (2005) A World of Relationships: Itineraries, Dreams, and Events in The Australian Western Desert. University of Toronto Press, Toronto Proulx K, Jacelon C (2004) Dying with dignity: the good patient versus the good death. Am J Hosp Palliat Care 21(2): 116–20 Prout S (2009) Security and belonging: reconceptualising aboriginal spatial mobilities in Yamatji country, Western Australia. Mobilities 4(2): 177–202 Rosenwax LK, McNamara BA (2006) Who receives specialist palliative care in Western Australia - and who misses out. Palliat Med 20(4): 439–45 Seale C (1998) Constructing Death: The Sociology of Dying And Bereavement. Cambridge University Press, Cambridge, England Tang ST (2003) When death is imminent: where terminally ill patients with cancer prefer to die and why. Cancer Nurs 26(3): 245–51 Tong E, McGraw SA, Dobihal E, Baggish R, Cherlin E, Bradley EH (2003) What is a good death? Minority and non-minority perspectives. J Palliat Care 19(3): 168–75 WA Cancer & Palliative Care Network (2008) Rural Palliative Care Model In Western Australia. www.Healthnetworks.Health.Wa.Gov.Au/modelsofcare/docs/rural_palliative_model_of_care.Pdf (accessed 28 July 2014) Willis J (1999) Dying in country: implications of culture in the delivery of palliative care in indigenous Australian communities. Anthropol Med 6(9): 423–36 World Health Organization (2012) WHO definition of palliative care. www.Who.Int/cancer/palliative/definition/en/ (accessed 28 July 2014) Yao CA, Hu WY, Lai YF, Cheng SY, Chen CY, Chiu TY (2007) Does dying at home influence the good death of terminal cancer patients? J Pain Symptom Manage 34(5): 497–504 Zimmermann C (2007) Death denial: obstacle or instrument for palliative care? An analysis of clinical literature. Sociol Health Illn 29(2): 297–314
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