Diversity & Equality in Health and Care Open Access

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- (2014) Volume 11, Issue 1

Ma? ori perspectives on hospice care

Elizabeth Johnston Taylor BSN MSN PhD RN1*, Shirley Simmonds BSc MPH2, Ria Earp BA MA MBA3 and Puhiwahine Tibble Dip.Tchg B Ed NZTC Dip.DA Dip.TPR4

Professor, Loma Linda University School of Nursing, Loma Linda, CA, USA; formerly Research Director, Mary Potter Hospice, Wellington, New Zealand

Research Fellow, Eru Po¯ mare Ma¯ ori Health Research Centre, University of Otago, Dunedin, New Zealand

Chief Executive Officer, Mary Potter Hospice, Wellington, New Zealand

Instructor, Te Wa¯ nanga o Raukawa, Otaki, New Zealand; formerly Ma¯ ori Liaison, Mary Potter Hospice, Wellington, New Zealand

*Corresponding Author:
Elizabeth Johnston Taylor, 1555 Linda Vista Ave, Pasadena, CA 91103–1954, USA. Tel: +1 (626) 765– 6472; email: ejtaylor@llu.edu

Received date: 3 May 2013 Accepted date: 11 October 2013

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Abstract

Ma¯ori have the right to high-quality, appropriate care in all health settings. This study aimed to determine the perceptions and preferences of Ma¯ori for end-of-life care in a hospice. A Kaupapa Ma¯ori approach to research shaped this qualitative pilot  study. Data were collected using semi-structured interviews with five elders fromMa¯ori communities and two focus groups with seven family members of Ma¯ori patients who had recently received hospice care. Thematic analysis identified (1) that participants perceived hospice as like a hospital, a place where people died, (2) what they appreciated and wanted from  ospice, such as family-centred endof- life care and respect for Ma¯ori cultural practices, (3) what they perceived as problems and barriers to receiving hospice care, and (4) their potential solutions to these problems, such as community information seminars about the breadth of hospice services. These findings have implications for how Aotearoa/New Zealand hospices can ensure appropriate care for Ma¯ori patients and their families, as  well as for clinicians and other hospice staffwho aim to provide culturally sensitive care.

Key words

end of life, family carers, hospice,Ma¯ori, New Zealand, palliative care

Introduction

Ma¯ori are indigenous to Aotearoa/New Zealand, and comprise approximately 15% of the country’s 4.4 million inhabitants (Statistics New Zealand, 2011). Disparities between Ma¯ori and non-Ma¯ori in morbidity, mortality and the quality of healthcare services received are well documented (for example, see Robson and Harris, 2007). Ma¯ori are less likely to access healthcare services in general, despite having higher levels of need (Robson and Harris, 2007). Findings from a three-year chart review (n = 1293) conducted at a hospice based in Wellington, the capital city, showed that between 2006 and 2008 only 6% of patients selfidentified as Ma¯ori, even though Ma¯ori represent 10% of the population of this region (Capital Coast District Health Board, undated). Although this chart review indicated that the length of time during which individuals received hospice services and the number of inpatient unit visits did not differ significantly by ethnicity, it was found that Ma¯ori patients were significantly younger and were more likely to die at home than non- Ma¯ori patients (Taylor et al, 2012).

Many Ma¯ori people express beliefs and practices with regard to what constitutes health and with regard to the processes of death and dying which appear quite distinct from those from other cultural backgrounds (Cram et al, 2003; Walker et al, 2008; Waldon, 2003). Specific traditional rituals at the time of death and bereavement are as unique as those from any culture. Indeed, they can vary slightly from one Ma¯ori tribe to another. Traditionally, for example,manyMa¯ori believe that it is spiritually important to die and be buried at one’s ancestral home. Bodies are typically returned to this location if the deceased did not die there. Extended family and friends gather for 3 to 5 days to mourn the deceased at the local meeting house. Those who mourn talk, and even joke or sing, to the deceased to bring closure to their relationship. Mourners may sleep in the large meeting house where the deceased person is lying. At the end of the mourning period, the deceased person is buried (Schwass, 2005).

Hospices in Aotearoa/New Zealand are striving to respond to the New Zealand Palliative Care Strategy (Ministry of Health, 2001) that advocates culturally sensitive palliative care for all. A recent qualitative study of Auckland area indigenous and immigrant clinician, patient, and family perspectives on challenges to hospice services described several barriers to accessing hospice care among Asian, Pacific andMa¯ori people in northern Aotearoa/New Zealand (Frey et al, 2013). These barriers included unfamiliarity with what hospice care involves, perceptions of hospices as a place in which to die that costs a lot of money, language barriers, gatekeeping physicians who assumed that members of these groups would prefer not to use hospice services, and fear of discrimination from the predominantly white hospice clinicians (Frey et al, 2013).

These issues relating to end-of-life care are not unlike those found among other indigenous peoples, for example, in Australia, Canada, and the USA. All of these have been described as often having in common the following factors that affect end-of-life care (see, for example, O’Brien et al, 2013; Johnston et al, 2013; McGrath and Phillips, 2009; Kelly et al, 2009; Hotson et al, 2004):

• remote homes, resulting in social isolation when the patient is taken to an urban-based palliative care service

• beliefs and customs, such as spiritual connection with the land of one’s heritage, prompting the desire to die at home

• low economic status and distrust of western medical care contributing to delayed entry into a westernised healthcare system

• respect for traditional and spiritual healers and healing modalities

• the vital importance and involvement of an often large, extended family

• deference to elders in the community who can provide knowledge pertinent to end-of-life care

• holistic philosophies about how to live and die, which include a spiritual component.

Given the known health and healthcare disparities between Ma¯ori and non-Ma¯ori in Aotearoa/New Zealand, and the trend among indigenous peoples of the South Pacific and North America, it is plausible thatMa¯ori may not receive the same quality of end-oflife hospice care as non-Ma¯ori patients do. However, Ma¯ori have the right to high-quality, appropriate care in all health settings (United Nations, 2007).

With the exception of the study by Frey et al (2013) which recruited only six Ma¯ori patient or family carer participants, there is a paucity of documentation about Ma¯ori perceptions and experiences of receiving endof- life care from a hospice. A search of six databases (including CINAHL, PubMed and PsycINFO) revealed no other report of Ma¯ori patient or family perspectives. Therefore the purpose of this pilot study was to address the following questions. How do Ma¯ori perceive hospice care? What cultural practices would be desired if they were receiving care at a hospice? What aspects of hospice support are appreciated? What are the barriers to entering hospice services? What could hospices do to improve care for Ma¯ori patients?

Cultural and philosophical underpinnings

Hospices provide palliative care for those with a lifelimiting illness. Palliative care aims to ease suffering and maintain quality of life by addressing physical, psychosocial, cultural and spiritual symptoms and needs (Palliative Care Subcommittee, New Zealand Cancer Treatment Working Party, 2007). In Ma¯ori society this care is usually delivered by a multidisciplinary team, and places patient and familywha¯nau at the centre of care. The Ma¯ori te whare tapa wha¯ model of hauora (health) is based on four pillars: wairua (spiritual well-being), hinengaro (emotional and mental health), tinana (physical well-being) and wha¯nau (family, including extended family, and the wider social system) (Durie, 1985; Ministry of Health, 2012). According to this model, hauora is supported not only by disease prevention and cure but also by health promotion that recognises and builds upon existing assets, such as wha¯nau support.

Both palliative care and theMa¯ori te whare tapa wha¯ model emphasise holistic caring and value the role of wha¯nau. However, this study aimed to determine more precisely which aspects of palliative hospice care are appreciated by Ma¯ori people, and what other aspects could be improved to ensure that Ma¯ori patients receive appropriate care.

For an explanation of the te reo Ma¯ori terms that are used in this paper, see Table 1.

diversityhealthcare-Maori-terminology

Table 1 :Explanation of te reo Maori terminology

Methodology

Project design

This pilot study was shaped by the Kaupapa Ma¯ori research paradigm. The Treaty of Waitangi, the founding document of Aotearoa/New Zealand, sets out the principles of partnership, self-determination, equity, and protection for Ma¯ori (www.nzaot.com/downloads/ contribute/TheTreatyofWaitangiAFrameworkfor MaoriHealth.pdf). Kaupapa Ma¯ori applies these principles in a research setting for the benefit of Ma¯ori people, particularly the community in which the research takes place. KaupapaMa¯ori is oriented towards restoring justice, reclaiming resources and recovering histories (Smith, 1999). The Health Research Council of New Zealand mandates that any research involving Ma¯ori people must involve consultation with Ma¯ori and, in particular, Ma¯ori in the community in which the research will have an impact (Health Research Council of New Zealand, 2008). Thus Kaupapa Ma¯ori research is characterised as research byMa¯ori, forMa¯ori and with Ma¯ori (Health Research Council of New Zealand, 2008). Although the principal investigator of this pilot study (EJT) did not identify as Ma¯ori, the coinvestigators included a university-based health researcher (SS), the Chief Executive of a hospice (RE), and a Ma¯ori Liaison from the same hospice (PT), all of whom identified as Ma¯ori. This project was initiated by the Ma¯ori chief executive, who requested the hospice’s non-Ma¯oriResearchDirector to direct it. Te PouTautoko (meaning the central post supporting a meeting house), the hospice’s Ma¯ori advisory group, was consulted throughout the design and implementation of the study. This group provided affirmation for the design, suggestions about how to collect data, and recommendations about who to interview. The Ma¯ori researchers led and guided all communication and consultation with the Ma¯ori study participants and Ma¯ori community. They also ensured that appropriate protocol was adhered to at meetings and interviews.

The hospice

This study was conducted at Mary Potter Hospice (MPH), a charitable trust that serves the Wellington region of Aotearoa/New Zealand. This hospice offers free multidisciplinary palliative care, primarily in the home but also in day units and an 18-bed inpatient unit. Although there was a sense among the MPH staff that Ma¯ori hospice use was increasing, no empirical data to substantiate this observation existed.

Participants and recruitment

Participants were recruited in 2010 from two groups, namely whanau and kauma¯tua.

Wha¯nau

Wha¯nau are family members of Ma¯ori patients who had utilised the hospice service and who had died during the 6- to 18-month period prior to the study. Once they had been identified (by a computer search of hospice patient records), individuals were sent a letter of invitation and then contacted by telephone by the Ma¯ori Liaison to discuss participation. Face-toface or personal contact is preferable in Kaupapa Ma¯ori research (Smith, 1999). Given the salient role of wha¯nau support, the researchers chose to allow multiple members of one wha¯nau to participate. Opening the invitation to the wider wha¯nau was considered congruent with Ma¯ori culture.

Kauma¯ tua

Kauma¯tua were invited to take part in interviews. Kauma¯tua are male or female elders who are selected by their community for their knowledge of Ma¯ori customs and their ability to instill this knowledge in the younger generations (Barlow, 1994). Kauma¯tua may be called upon to settle disputes or to represent the community to those outside it.These elders arehonoured and shown considerable respect. The kauma¯tua, who were identified by the Ma¯ori advisory group or Ma¯ori Liaison, were approached by either the Chief Executive or the Ma¯ori Liaison. Kauma¯tua were selected not only because they could provide wisdom informed by a deep knowledge of Ma¯ori culture, but also because they could represent their communities at large. Kauma¯tua from diverse iwi (tribes) were selected. Although this was not planned, all five of them had had relatives who had received hospice care.

Ethics

The Central Regional Health and Disability Ethics Committee granted approval for the study. All of the participants (focus group members and kauma¯tua) gave their written consent after receiving information about the study. The consent document advised participants that if their participation caused distress, the hospice’s spiritual carers and counsellors would be available to them.

Methods

Research based on Kaupapa Ma¯ori tends to favour qualitative methods, as these are based on social interaction. Two methods were selected:

1 Wha¯nau participants were invited to take part in one of two focus groups, both of which took place in a Ma¯ori health clinic adjacent to a meeting hall (marae). These focus groups were conducted in accordance with accepted practice, with limited group size, a pre-set structure for questions and the meeting, guided by a trained facilitator, with a secondary researcher in a supportive role (Ruff et al, 2005).

2 Kauma¯tua were interviewed privately in their homes.

Both the focus groups and interviews followed Ma¯ori protocol relating to mihi (introductions), and were led by the Ma¯ori researcher, with the non-Ma¯ori principal investigator taking a secondary role. The Ma¯ori language, te reo, was encouraged if participants chose to speak it. Each participant used a number of Ma¯ori words and idioms, and one elder chose to conduct most of the interview in te reo Ma¯ori. (Translation of the occasional word or phrase was done by a Ma¯ori member of the research team after the transcription. The interview in te reo was transcribed by the Ma¯ori research team member who had conducted the interview, and was then translated by a professional language translation service.) Following each focus group, wha¯nau participants were acknowledged with kai (food), which is central to Ma¯ori gatherings, and kauma¯tua were thanked with a gift voucher for NZ$30.

The focus groups and interviews ranged from 1 to 2 hours in length and addressed the same topics (see Box 1). If the participants agreed, interviews and focus groups were audio-recorded. One kauma¯tua requested that his voice should not be recorded, but agreed that notes could be taken. The recorded focus groups and interviews were all transcribed by either a professional service or a hospice employee.

Various strategies were used to ensure the trustworthiness of the findings (Lincoln and Guba, 1985). These included prolonged in-depth engagement with participants for at least 1 hour, creating an audit trail (audio recordings or notes of data collected and documentation about the analysis process), peer debriefing with project team members during regular meetings, and obtaining validation for the findings from a nonresearch team member who was an expert in Ma¯ori perspectives on hospice care.

Analysis

An inductive thematic analysis (Patton, 2002) was completed by the two researchers who conducted the interviews. This analysis involved extracting from the transcriptions the data that were relevant to the study questions. These data were then condensed into themes, keeping with them pertinent illustrative data. The themes were clustered mostly around how hospice care was perceived, what was appreciated or desired at a hospice, possible barriers to using hospice services, and miscellaneous observations about how the Ma¯ori participants related to death and dying. Although the findings were written by the non-Ma¯ori project team leader (EJT), they were reflective of separate analyses performed by both herself and theMa¯ori co-researcher (SS). During this final stage of the analysis, these researchers discussed their respective perspectives on the data to ensure reliability and cultural sensitivity; this discussion revealed only minor discrepancies.

Findings

A total of 35 wha¯nau were identified as eligible to take part in the study. However, when the Ma¯ori Liaison attempted to contact them it was found that either they were either no longer contactable by the telephone number listed in the deceased patient’s chart, they were not Ma¯ori themselves, they did not have transport, they did not have a family member to accompany them, they were afraid to participate, or they declined to participate for an unstated reason. The Ma¯ori Liaison perceived that this was evidence of a fear of talking about death. Finally, seven wha¯nau (one man and six women, aged 34–74 years) agreed to take part in the focus groups. They were the husband, daughter, mother and wives of the deceased persons. Each individual brought a relative who also participated, sharing their own stories of living with a loved one who had received hospice care. These whanau, who represented the experiences of three hospice patients, all became study participants (n = 7). Five kauma¯tua (four women and one man, aged 62–79 years) were approached, all of whom granted interviews. They were the spouses or parents of the deceased persons.

image

Theme 1: How do Ma¯ ori people perceive hospice care?

Although some of the participants described receiving a hospice nurse’s care for their loved one at home, they all equated hospice care with the inpatient unit (IPU). A few referred to it as being like a hospital, a place where ‘they have their rules ... [and] they are in charge’, and consequently ‘you don’t have the freedom you do at home ... you are a guest there ... it isn’t your space’ (kauma¯tua participant). Several participants were aware of the hospice as a place of care for those with cancer and also for elderly people, inferring that younger people or those with terminal nonmalignant diseases may receive care elsewhere.

The hospice was most frequently perceived as a place that ‘you don’t leave alive.’ It is where one dies: ‘the last ride out’, ‘the end, doom and gloom!’ (kauma¯tua participant and wha¯nau participant, respectively). The participants stated that most Ma¯ori people whom they knew shared this perception. However, they added that their personal experiences did not support this perception, and that they now recognised the hospice as a place for respite care and symptom management. A wha¯nau participant described how she came to realise that hospice care for her loved one meant that ‘it wasn’t just the end ... there was more that could be done.’ One kauma¯tua participant went further than this, stating that hospice care could prolong life ‘at least a few days as its eases pain and suffering.’ This elder posited that wha¯nau who do not take their suffering, dying loved one to a hospice ‘are selfish to themselves and not caring about the sick.’

What aspects of hospice care do Ma¯ ori appreciate?

The participants’ views provide insights into what Ma¯ori people value. Those who had witnessed respite care for a loved one found it an extremely positive experience: ‘for my children and family if I’m at Mary Potter, leave me there. [Be]cause I do know the strain on the family’ (wha¯nau participant). Others perceived benefits of hospice care included the quietness in the IPU, which allowed the ‘spirit to settle’ (wha¯nau participant), patient care equipment for use at home, information about how to care for the patient and what was happening, counselling and ‘someone to talk to’ (wha¯nau participant), follow-up bereavement care, the presence of spiritual carers (clergy) and the availability of a chapel, a non-denominational memorial service, and the availability of and feeling comfortable with asking staff for help. One kauma¯tua participant described a visit to support someone at their death with karakia (prayer), and experienced the nurses as culturally ignorant and disrespectful. However, all of the other participants enthused about the compassion that they experienced from hospice staff. For at least one individual, the hospice IPU could create a comforting sense of community: ‘There is a sense of everybody knowing ... it’s like we’re all wha¯nau even though you are all strangers. ... I was able to go there, not just to be with [my husband], but with the people that are around, that are just sitting there, just to be part of ... if they wanted ... have a talk ... I like it in there’ (kauma¯tua participant).

What aspects of Ma¯ ori culture are desired in hospice care?

Wha¯nau-centred care was of vital importance to the participants. They appreciated being allowed to visit and stay at any time, being ‘free to come and go’ (wha¯nau participant). Wha¯nau carers wanted staff support so that they could continue to provide care such as bathing, and wished that staff would ask their permission to provide care for their loved one. Wha¯nau also emphasised the importance of letting their loved ones spend their final days at home. Elders in particular preferred to die at home. The reasons for wanting to go home for the final days of life were varied, and included the following: ‘Ma¯ori take care of their own ... it’s better, more flexible, they prefer their own space’ (kauma¯tua participant); ‘[my mum] didn’t want to die in somebody else’s bed’ (wha¯nau participant); ‘their own home is their roots, it’s everything— tu¯rangawaewae [a place where one has the right to observe one’s own protocols for behaviour, and freedom to express one’s emotions and opinions; this place is linked to kinship and genealogy]’ (wha¯nau participant). The importance attached to dying at home could create internal conflict when the wha¯nau carers became exhausted. The hospice’s respite service was welcomed both as an option when this occurred, and for those patients who did not have local wha¯nau support: ‘It takes people in to give the family a break’ (kauma¯tua participant).

What caring practices do Ma¯ ori people use?

The participants identified a range of tikanga Ma¯ori (cultural practices) (see Box 2). Speaking te reo Ma¯ori (Ma¯ori language) to those who spoke te reo ‘got through’ and ‘settled’ them (wha¯nau participant). Te reo ‘language is important ... it’s much nicer and much softer in your own language’ (kauma¯tua participant). This same participant recommended that nurses learn some te reo, especially greetings and farewells, and the everyday terms such as the words for eating, toileting and bathing.

Other tikanga reflected Ma¯ori beliefs about people, places and conditions being either tapu (sacred or restricted) or noa (unrestricted or ordinary). For example, when a person died, the room and the body of the deceased became tapu. Sprinkling water provided spiritual cleansing, and karakia [prayer] was used to mark the transition of the person from one state to the other. When visitors arrived to view the deceased person, they washed their hands when entering and leaving the room. Karakia and sprinkling of water in the hospice room after the deceased person had been removed was regarded as essential before that room could be used again. Other examples concerned the use of linen, care of personal valuables, disposal of body tissue, and types of food and drink. One family was displeased with the lack of privacy afforded them when they accompanied their deceased loved one from the IPU room to the undertaker’s room, which is regarded as a very sacred moment.

Several kauma¯tua recognised the requisite of institutional support of tikanga Ma¯ori practices if they were to occur. Policies supporting tikanga Ma¯ori, staff cultural training, and the employment of Ma¯ori staff who are respected and in leadership positions were seen as contributing to positive hospice experiences for Ma¯ori people. The lack of staff knowledge was evident in one poignant negative experience: ‘We did our karakia [in this case sung] and we were strong, but the nurses were just a nuisance with their applauding and wandering around. They didn’t realise that tikanga Ma¯ori was taking place’ (kauma¯tua participant).

What are the barriers to accessing or receiving hospice care?

Many of the problems that the participants encountered with hospice care were also considered to be reasons that discouragedMa¯ori people from accessing hospice services. The most frequent and salient response to queries about these barriers was the perception of hospice care as the ‘end of the line’ (wha¯nau participant). One kauma¯tua participant believed that the denial of death prevented people from learning about and using hospice care. The other major reason thought to prevent Ma¯ori people from using hospice care was the cultural imperative around ‘caring for our own’ (wha¯nau participant). There is a perception among many Ma¯ori that ‘there are no options given to wha¯nau who want to look after their own’ (kauma¯tua participant). Elders in particular do not want to leave their own space, and the grandchildren they may have raised, in order to enter an institution likened to a hospital. The struggle to care for one’s own was sometimes intensified by this imperative. Those who accepted respite care in the IPU for their loved one recognised that they ‘just couldn’t do any more’, and stated that receiving respite care at the hospice was ‘a release’ (wha¯nau participant).

Other problems or barriers to receiving hospice care included difficulties with transportation and parking, and wishing that the hospice was closer to the pa¯ (Ma¯ori settlement), particularly if one was ‘the only brown face’ (kauma¯tua participant), as the presence of other Ma¯ori people allowed one to feel more comfortable and understood. Medical jargon and the lack of open communication were not helpful: ‘I got really annoyed about [the staff] giving people false hope when the truth is they’re going to die’ (wha¯nau participant). An additional issue was the lack of privacy: ‘We went in there and there were two or three [patients] in the room. ... Here we were going to look at my nephew, to weep for him, and to say ‘The time has come for you to leave, but your path is clear before you.’ How could we weep? How could we show our grief in that room when others were there?’ (kauma¯tua participant).

image

These factors led participants to offer the following specific suggestions about how to counteract these challenges:

• offering better support for tikanga, such as providing a place for kauma¯tua to carry out cultural practices, and training staff about tikanga

• offering better support for whanau, such as providing facilities for kai preparation, childcare for visiting young children, a laundry service, encouraging the family to appoint a spokesperson to interface on their behalf with clinicians, and addressing transportation and parking limitations

• improving the environment, moving closer to the pa¯, and making the hospice more like a marae [Ma¯ori meeting house]

• counteracting misperceptions of hospice care by providing information seminars within the Ma¯ori community and advertisements about hospice care, encouraging Ma¯ori patients and wha¯nau to share their positive stories of receiving hospice care, and changing the term ‘hospice.’

These suggestions were offered in the hope that other Ma¯ori people would similarly come to benefit from hospice care.

The participants all recognised that their culture was changing in terms of how it perceived end-of-life care should be. It was acknowledged that some individuals, especially older people, were more observant of tikangaMa¯ori, while others were less aware of their culture’s beliefs and practices with regard to end-oflife care. For example, some might want rongoa¯, mirimiri or karakia, while others might not.

Discussion

This small study presents the perceptions held by some Ma¯ori wha¯nau about hospice care. The findings demonstrate how the holistic Ma¯ori framework for well being is compatible with the perceptions of and preferences for end-of-life care for Ma¯ori patients and wha¯nau (Ministry of Health, 2012). The physical and mental health of the individual, their spiritual well-being and spiritual realities were all of concern to Ma¯ori people. Central to the quest for hauora is wha¯nau ora, family well-being, and support for and by members of the wider family. Encompassing these perspectives is tikanga Ma¯ori (Ma¯ori cultural practices). Indeed, these findings demonstrate how many practices, such as te reoMa¯ori, mihi, waiata and uses of kai, continue to be highly valued in the culture and are therefore vital to culturally sensitive care at the end of life (Barlow, 1994).

All of the participants identified various barriers that could prevent Ma¯ori people from using hospice services, and these were similar to the findings of Frey et al (2013) and Bray and Goodyear-Smith (2013). However, positive personal encounters with the hospice changed their perceptions. Patients could enter and leave the IPU, which meant that more could be done to help. Respite care allowed families to have a break but still remain as involved as they wished. Hospice clinicians generally showed them compassion and respect. These factors, taken together, led most of the participants to endorse hospice care.

Hospices could provide better support with end-oflife care for Ma¯ori people. Marketing hospices as resources that support wha¯nau as they care for their loved one with a terminal illness at home or within the hospice would help to address negative perceptions of hospice care (Bray and Goodyear-Smith, 2013). There was also a need to counteract misperceptions of hospice care as shortening life, and to make it clear that hospice care could ease unnecessary distress, and potentially prolong life (Temel et al, 2010).

The participants recognised that their culture was changing and that therewas a diversity ofMa¯ori beliefs and practices. Given the extraordinarily dynamic nature of Ma¯ori culture, it is important to continue to study how best to support Ma¯ori people at the end of life, and to exercise flexibility. Clinicians must be prepared to cater for diverse expressions and experiences of Ma¯ori culture and incorporate tikanga Ma¯ori practices with sensitivity.

Study limitations

This study has some limitations that will affect the extent to which the findings can be generalised. It was a very small study, with only 12 participants from the Wellington region, so it cannot be assumed that the perceptions held by these participants are reflective of all Maori patients and wha¯nau. The perspectives of Ma¯ori people from the south end of the North Island or other regions of the country were not included. In addition, the study focused on those who had experienced hospice care at one particular hospice, and the results are therefore inevitably specific to this particular service.

Conclusion

This exploration of the perspectives of Ma¯ori people about end-of-life care in a hospice shows how one indigenous people’s knowledge and praxis in this regard interfaces with a Eurocentric approach to care. Although the concept of hospice care reflects a western paradigm, these findings suggest that there are aspects of holistic hospice care that could be readily aligned with the Ma¯ori hauora framework and used by palliative care professionals to provide culturally safe care.

ACKNOWLEDGEMENTS

The authors are grateful to the New Zealand Health Research Council for funding this Ma¯ori Seeding Grant, as well as Mary Potter Hospice’s Maori advisory group Te Pou Tautoko, the wha¯nau and kauma¯tua who shared their personal knowledge for this study, and Katherine Reweti-Russell, Project Facilitator, Ma¯ori Health Development Group, Capital and Coast District Health Board, Wellington, New Zealand.

References