END- OF- LIFE CARE AND MÄORI WHÄNAU RESILIENCE

Tess Moeke-Maxwell* Linda Waimarie Nikora† Ngahuia Te Awekotuku‡

Abstract

This article focuses on the cultural resources that made Mäori carers resilient when providing care to an ill family member at the end of life. Caring often took place against a backdrop of poverty, personal factors, racism and a lack of health literacy affecting access to resources. The action values of aroha and manaakitanga, compassionate giving, caring, receiving and sharing established a resilient foundation upon which whänau engaged in the illness-to- death trajectory. It served to fortify the dying and their whänau and provided a sense of belonging and a meaning- ful way of engaging with illness, dying, death and bereavement.

Keywords

caregiving, culture, palliative care, resilience, whänau

Introduction palliative care from acute to community settings places a huge responsibility on whänau to pro- Providing care to a whänau member at the end vide end-of- life care in the home setting (Gott, of life is an important contribution whänau Williams, & Moeke-Maxwell, 2014; Ministry make to each other, their communities and of Health, 2001). High incidences of chronic the nation. In , the recent shift in and degenerative diseases among Mäori and

* Research Fellow, School of Nursing, University of Auckland, Auckland, New Zealand. Email: t.moeke- [email protected] † Associate Professor, Mäori and Psychology Research Unit, University of Waikato, Hamilton, New Zealand. ‡ Professor, Mäori and Psychology Research Unit, University of Waikato, Hamilton, New Zealand. END-OF- LIFE CARE AND MÄORI WHÄNAU RESILIENCE 141 palliative care treatments that prolong life mean this capacity for adaptation and “bouncing whänau are increasingly being called upon to back” in the face of adversity. Across the life provide end- of- life care for months or years. course, the experience of resilience will vary According to the New Zealand Carers’ Strategy, (p. 152).

Anyone can fi nd themselves caring for another Resilience studies tend to explore negative person, usually a family, whänau or aiga social processes like homelessness, poor health, member, at any time. Often this can happen recessions, discrimination, limited education, unexpectedly, e.g. sometimes as the result of and their consequences, such as at-risk chil- an accident or sudden illness. Most carers see dren and youth, and diminished mental health themselves not as carers but as relatives or (Steven et al., 2011). Research on carer resil- close friends of the person who needs support. iency provides some insight into protective (Ministry of Social Development, 2008, p. 4) factors during an often critical and diffi cult time for families. A study by Giesbrecht, Wolse, Caring requires families to “balance their Crooks, and Stajduhar (2014) investigated the paid work, their caring responsibilities and socio-environmental factors that facilitated other aspects of their lives” (Ministry of Social resilience among Canadian palliative caregivers. Development, 2008, p. 4). Risk factors com- Six factors played a role in shaping family carer pound when carers are unwell themselves, are resilience: access to social networks; educa- fi nancially challenged or have other stressors. tion/knowledge/awareness; employment status; Mäori whänau carers potentially face high risk housing status; geographic location; and the factors due to socio- economic and environmen- life course stage. Giesbrecht et al. (2014) assert tal factors which can become exacerbated at the there is an increasing responsibility on families end of life and affect, for example, home death to provide palliative care in the home, “result- preferences (Gott et al., 2014). This requires an ing in some caregivers experiencing high levels ecological approach (Bronfenbrenner, 1994) of stress and burden that may ultimately surpass to understand the pressures carers face and their ability to cope” (p. 1). They conclude that to understand people in interaction with, and resilience is multi- dimensional; it is a com- infl uenced by, the physical, social and economic plex process infl uenced by numerous related environments in which they live (Windle, 2011). variables that intersect to create positive and negative experiences (p. 1). In another study on resilience and family carers of people with Whänau resilience dementia, researchers identifi ed positive factors that increased resiliency, reducing the risk of The resilience and capacity of whänau to provide higher rates of depression, anxiety and hope- care and support to its members, particularly lessness; these were the use of coping strategies, during times of adversity, has been the focus faith, social support and personal characteris- of the New Zealand Carers’ Strategy (Ministry tics (O’Dwyer, Moyle, & van Wyks, 2013). of Social Development, 2008). Windle (2011) While the above studies highlight the fl uid describes resilience within the end-of- life con- nature of resilience, we must remain aware text as that most overlook the cultural foundation and meaning-making experience of participants. the process of negotiating, managing and Writing about end- of- life care practices amongst adapting to signifi cant sources of stress or Mäori, Paratene Ngata (2005) highlights ele- trauma. Assets and resources within the indi- ments that make up a cultural framework vidual, their life and environment facilitate of care which support the well-being of the

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individual and the broader whänau, thereby However, all whänau are different and members enhancing resiliency. , shared cul- may or may not share the same whakapapa tural and familial values, and a commitment and cultural values, beliefs and practices. Each to the process of caring for a loved person and whänau is made up of individuals who con- their whänau as a whole both strengthen and tribute to the overall resilience of the family as encourage a way forward. He draws attention a whole. Individual life histories refl ect highly to the strength of the whänau as a collective, specifi c gendered and ethnic subjectivities and a unifi ed group, where individuals carry the life experiences (Moeke-Maxwell, 2005, 2008) responsibility of ensuring the well-being of the which shape coping thresholds and capabilities. group is maintained. He demonstrates that Individuals exhibit varying coping abilities, so these cultural processes seek to reduce indi- that some are able to manage adversity and vidual suffering as this negatively impacts and stress more effectively; for example, the presence weakens the whänau as a whole. The cultural of early childhood attachment or trauma may imperative to release overwhelming emotions, affect personal resiliency (Steven et al., 2011). for example, is important to reduce risk of In this paper we present an aspect of the depression and anxiety associated with loss and findings of the broader Kia Ngäwari study grief. For Ngata, dying and death are a familiar (2010–2012) funded by the Health Research terrain and ancient tikanga are in place to man- Council of New Zealand. The aims of Kia age this part of the life cycle. A profound belief Ngäwari were to investigate the end- of- life in wairuatanga, the deeply fl owing beliefs and experiences of Mäori and their whänau to cultural practices involving the spiritual realm, understand their palliative care needs, cul- permeate all aspects of life and govern all stages tural requirements and bereavement. Below, of living and dying (Pere, 1991). we present and discuss those fi ndings related The definition of the term “whänau” to resilience and whänau capacity to care for employed throughout this paper is “a collective their ill and dying whänau member with dignity of people connected through a common ances- (Moeke- Maxwell, Nikora, & Te Awekotuku, tor (whakapapa) or as the result of a common 2013a, 2013b). purpose (kaupapa)” (Families Commission, 2010, p. 9). Whänau resilience is defi ned as the processes which support whänau in caring for a The Kia Ngäwari study, 2010–2012 member following news of a life- limiting illness. It is the capacity to respond productively to the The study employed a Mäori- centred eth- challenges that arise through the process of nographic research design which included caring for an ill family member throughout the face-to- face interviews with whänau, journ- living, dying and bereavement phases. Whänau aling, photo elicitation, case studies and resilience is therefore inherently relational and autoethnography (Denzin & Lincoln, 2005; is conceptualised as a capacity born out of the Moeke-Maxwell et al., 2013a, 2013b). Twenty- interrelatedness and associated cultural and seven adult men and women and their whänau social capital of a collective such as whänau situated predominantly in the Waikato and (Houkamau & Sibley, 2010). South Auckland engaged in the study. Most In a whänau- centred resilience framework were over the age of 50 and the group was the family is viewed as somewhat fl uid as new divided into two cohorts: those who were car- members are included through birth, relation- ing for someone with a life-limiting illness and ship, marriage and evolving social networks. those with historic caregiving experiences. Whänau well- being and that of its individ- Fifteen whänau had a family member with a ual members are mutually inter-dependent. current life- limiting illness while the remaining

MAI JOURNAL VOLUME 3, ISSUE 2, 2014 END-OF- LIFE CARE AND MÄORI WHÄNAU RESILIENCE 143 provided information about their historical to discover patterns related to the meanings and experience of providing care to a family mem- practices whänau associated with experiences ber. Most participan ts lived in urban areas; of living with dying and with whänau capacity however, just under a third lived rurally. The to care for the dying (Denzin & Lincoln, 2005; majority identifi ed strongly as Mäori and most Wiles, Rosenberg, & Kearns, 2005). More were familiar with tribal customs. Many were importantly, we tried to refl ect the experience fl uent in te reo Mäori. Older people generally of participants by drawing on those cultural grew up rurally and moved into urban settings frameworks they themselves used in their as young adults. A small group were deeply narratives and ways of seeing the world con- knowledgeable about traditional customs and sistent with kaupapa Mäori research principles rituals while others were comfortable modify- (Pütaiora Writing Group, 2010). ing traditional customs to suit contemporary circumstances or occasions and the needs of the whänau, refl ecting a more hybridised lifestyle Findings (Moeke-Maxwell, 2003, 2012). Co-morbidities, including mental health issues, were common. This section considers activities and routines Only a few participants identifi ed less with their that Kia Ngäwari study participants developed taha Mäori. Most participants were dependent to care for the ill or dying whänau member. on Government-assisted incomes, worked part- Attention is fi rst given to the contextual diffi - time or were low-income earners. culties that whänau shouldered. For example, a In the majority of cases the person with a life- daughter carer described how she coped dealing limiting illness was supported by other whänau with her own health issues. She recalled: members in an interview which lasted up to 2 hours. Sometimes, interviews were spread To be honest I’d have to say Dad’s illness over two separate days to accommodate the was my biggest stress, really from the time he health needs of the ill person. From the main took sick I was already wavering then, way cohort six adults were invited to participate in back then … Now I’m just starting to get hair a case study to capture information about their returning … well little random bits … I’ve ongoing needs and experiences of engaging with dealt with it, slapped my wig on and tattooed generalist and specialist palliative care services. some [eyebrow] lines on … At the end of the Selection was based on a range of chronic and day even when it [my hair] fell out I barely acute illnesses, gender and a mix of geographi- spent anytime feeling sorry for myself ’cause cal locations. Although repeat interviews were my dad was dying; my mum’s a cancer survi- conducted with all case study participants, vor, and I just thought “Oh well, you know several participants opted to augment data col- I’m alive, I’m not dying,” so that put things lection with photo essays and journals which into perspective pretty fast. were discussed during the interviews. All participants received a Warehouse Providing care that gave “quality to life” and voucher to acknowledge their participation “dignity to death” (World Health Organization’s and contribution, and their journeying was Quality of Life Group, 1997) was made more recorded into a narrative presented to them diffi cult depending on illness type and dura- as koha. Each whänau had the opportunity tion (some illnesses require specifi c care over a to comment, change or delete content to suit. longer period of time); the social and economic Pseudonyms assured confi dentiality. positioning of whänau; co-morbidity of per- For this paper we purposefully, critically and son with illness, their primary carer or other repeatedly interrogated participant narratives dependent whänau; whänau carer sustainability

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(small families or only one primary carer); living times the ill person relied on the rangatiratanga arrangements; low palliative care health literacy of the whänau to make good end- of- life care (Ministry of Health, 2010); and high fi nancial decisions on their behalf. Tia’s whänau put a costs associated with end-of- life care. care management plan in place for their mother. Each of the following sections addresses While her brothers provided fi nancial support, a specifi c strength, approach, or area which positively contributed to increasing whänau Ariana [sister] was in charge of making sure carer resilience: rangatiratanga; whänau kota- that her medication was [taken care of] … hitanga; aroha and manaakitanga; making she was in charge of taking Mum to the doc- meaning from illness and death; tangihanga; tor to her appointments and what have you. and spiritual and religious beliefs. Moana’s [midwife] role was everything; it was making sure that the house was well looked after for our mother’s comfort … I was sort Rangatiratanga of like a fl oater, I would sort of fl oat, but if it was anything to do with her medication Participants with a life- limiting condition were … anything to do with that it was primarily usually able to maintain their own rangatira- Ariana. (Tia) tanga until their illness progressed and prevented them from continuing. They took care of their Many whänau carers who supported the ill and own affairs and liaised with medical and health dying, particularly those with chronic health services and administered medications for as conditions, appeared to link the origin of illness long as they could. For example, Kelly highly to Mäori disenfranchisement and poverty asso- valued her independence: ciated with colonisation and socioeconomic status; historical trauma; alcoholism; obesity; Yeah I like to be independent … I don’t like and inadequate housing. A lack of fi nancial asking for help, I’d rather do it myself. I mean and material resources prevented easy access to I actually drive myself to chemo and back, to medical support and procurement of medica- radiation and back … Yeah, so my husband tion for some people. Financial factors placed says, “I’ll take you.” I says, “No you won’t, a huge burden on the sick but their love for I’ll drive.” their whänau made them determined to live. Ripeka described what fortifi ed her when she Kaumätua continued to honour their obliga- struggled with debt: tions in their communities, contributing to whänau and community life for as long as they So I helped her out [financially] but now could. Nat, a kaumätua with a serious heart I’m suffering and I feel sorry for my fam- condition, continued to provide his expertise ily, because they’re suffering too because I’m on to students. Other kaumätua engaged paying their [other family’s] loan off which is with and business participated in quite a lot. So I’m still paying that back and I familial and community matters, and offi ciated think that’s what the determination is, “Don’t at formal gatherings like tangihanga. Whänau let me die tonight ’cause I still need to carry felt it was important to support kaumätua to on working for a wee while yet ’cause I don’t continue their cultural obligations for as long want to leave that debt with my kids.” I need as possible. Eventually, the illness progressed to get myself out of that debt with my family; and life became challenging with fewer and my kids shouldn’t be taking on that burden. So fewer excursions as capacities diminished and I motivate myself to keep going. Some days I care and support became more central. At these could be in such pain but I push myself, yeah.

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Racism within the health system thwarted the Successful caregiving relationships were those rangatiratanga of several participants. Allan with a strong sense of connectedness and com- was diagnosed with cancer prior to joining the mitment within the immediate and extended case study. A self-diagnosed alcoholic and for- whänau and broader care community. mer drug user, Allan felt this was the reason staff in an urban hospital withheld pain medication from him. He believed they “stereotyped” him Aroha and manaakitanga as a current drug user. He reported experiencing severe pain and the memory of this stayed with Aroha and manaakitanga were two dominant him throughout his illness trajectory, causing action values present in whänau carer narratives. him to have ongoing anxiety about his end- Aroha was witnessed in compassionate care and of-life pain and symptom management. Allan patience within the physical and social environ- feared that pain relief would be withheld from ments, which enriched, affi rmed and bolstered him at the time of his death. trust and encouraged whänau to care for each Whänau carers strove to make life as normal other. Healing and sustenance came through the as possible for as long as possible. Whänau close emotional, spiritual and physical engage- empowered themselves by planning future ment that whänau provided. Participants often goals, attending anticipated social events and reported an ill person’s wairua being uplifted fulfi lling cultural obligations. They planned and by children and mokopuna. Children “warmed celebrated important milestones. They did not a home” with their gaiety and laughter. Seeing give in easily to death. a familiar ancestral landscape—a maunga, an urupä, a marae—had a similar healing affect. Pursuing the value of manaakitanga (see Whänau kotahitanga also Ritchie, 1992) meant it was everyone’s responsibility to share resources to support a Whänau came together to support each other caring environment for the dying as well as each when news of a life- limiting illness emerged. whänau member. Cultural and family values Several whänau provided detailed accounts of infl uenced the way practical caregiving tasks how they prioritised the needs of the ill per- were carried out; it ensured the needs of the son; they described their whänau being united unwell/dying person and their broader whänau in their efforts to shoulder the care burden. were catered for. A dedicated daughter recalled: This not only benefi ted the ill person but also supported the primary carer. Unifi ed families I have to stop everything; Mum goes into shared the spectrum of care responsibilities. hospital—I stop. These fellows [my children] When having to negotiate geographic distances, get palmed off to whoever [family] will have sometimes bridging this distance was a chal- them, and I do Mum. When Mum’s fi nished lenge to overcome. and I come home, do my dinner and then I Many whänau who provided support to take off back to Mum … When Mum gets the ill or dying often had strong positive tribal really bad, I’ll bath her. I’ll make her get out engagement. They confronted the illness adver- of her bed so I can bath her … like she’s been sity by confi dently drawing on Mäori world sick this week so she’s been in bed most of the values, beliefs and relationality to guide, sustain weekend. Yesterday I forced her to get out of and give meaning to their experiences. Strong bed to have her shower, and I could quickly unifi cation and a common goal provided the just change her sheets. best possible care and brought positive out- comes through and beyond the illness journey. A sense of connectedness and relatedness

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built upon reciprocity between immediate and provided travel, organised and administered extended whänau and community provided a medications, facilitated social encounters, sense of belonging and emotional healing and assisted discussions about preferences for end- supported resources being shared. of-life care and supported their implementation. Carers supported the ill in the cultural transference of taonga and kaitiakitanga. They Kaitiakitanga—Leadership arranged and attended hui with immediate or extended whänau to oversee succession plan- Not all people who were ill or dying had a ning of responsibilities concerning whenua, large whänau to support them. The care and personal taonga and the transference of kaumä- leadership of a sole family carer demonstrated tua and kaitiaki roles. The care needs of the whänau resilience in an otherwise bleak situa- dying person became the central focus around tion. Often, the provision of daily care typically which daily living, the household and whänau fell to one main caregiver (see also Schumacher, were organised; the “primary” carer made it Stewart, Archbold, Dodd, & Dibble, 2000), happen. usually a close family member, and they too were sometimes unwell. One female carer who had her own health issues recalled how hard she Making meaning from illness and found it to make the decision to involve hospice death in her husband’s care: Whänau appeared to develop a sense of meaning It was brave [to go to hospice]. Boy I cried. It or purpose related to the illness or death experi- made me think as if I didn’t want him [hus- ence. With each successful medical intervention band], I didn’t love him, but I told him … whänau gained renewed hope for longevity but, I said, “Gee I’m tired.” He said, “Tired of similarly, with every setback came disappoint- what?” I said, “I’m tired, there’s too much ment and emotional turmoil. Participants with going on. Your family’s coming ’round, I’ve life- limiting illnesses expressed anxiety related got to feed them, plus feed our kids and then— to leaving their whänau behind when they died. we’ve got nothing to feed them on.” Some expressed their fears of the unknown and several people spoke about their fear of physical Primary carers tended to have a big picture pain at the time of death. Open communication view of their whänau members’ illnesses and skills were essential to ensure everyone was needs because they tended to intimate care, informed about new developments, care needs feeding, checking on hygiene, pain and comfort. and personal preferences for end of life. Kelly, They also took responsibility for the day- to- day who had inoperable cancer, commented that practical living needs associated with running her whänau communicated a lot: “We sit down the household. If tasks were delegated to other as a family … like they’ve always been involved whänau members, the primary carer became the with my [colostomy] bag, and they’re telling overseer coordinating domestic chores such as me [things] and every night we’ll sit around the cooking, cleaning, paying bills, mowing lawns table and we talk about things.” and gardening, and caring for family members Whänau who could make meaning from including tamariki/mokopuna, the elderly and their experiences appeared to cope better than others who were unwell. They also helped to those who felt overwhelmed by what was hap- access health care and support. They arranged pening. Enacting spiritual rituals like karakia medical and health- related appointments and supported the ill or dying in overcoming painful Work and Income (WINZ) appointments, or intrusive medical procedures, and whänau

MAI JOURNAL VOLUME 3, ISSUE 2, 2014 END-OF- LIFE CARE AND MÄORI WHÄNAU RESILIENCE 147 were more likely, in the face of adversity, to a previous positive experience of using hospice maintain a positive outlook and hope for the services refl ected on why she chose hospice to future following death. For example, a kaumä- help her and her whänau care for her dying tua whose wife died found a way of being with husband: her through prayer, which he found comforted his grief. He commented: I didn’t have the facilities here [at home] either, and I know that’s what [he], I know But it was hard the fi rst two months, it was he would have been thinking that … “I don’t hard for me because we were so close and I want to die at home.” … Not that he said it, didn’t think I’d ever let her go, because man not that he said it. But I know, knowing [him], … ’cause I got a son and [daughter] living he wouldn’t have wanted to die at home. here. When they’ve both gone to work, oh I feel it, but not now, I don’t. Because I think Occasionally, when the illness progressed it’s because I talk to her every night; it’s just beyond the capability of the whänau to pro- looking at her photo, something for me with vide care at home, important decisions had to her, while they’re all sleeping. [Daughter] be made. Sharon, who was aware of hospice, starts work at 11 o’clock at night … and then recalled supporting her adult nephew. He had I say, “I’m going to have my pray” so I have managed to maintain his personal independence a pray with her [wife], so I think that’s one for a long time with support from his dedicated way I’m getting over it. and caring whänau. But the time came when he needed more intense support and eventually his As stated earlier, planning ahead and goal set- need for 24- hour care became diffi cult for the ting helped whänau prepare. Whänau discussed whänau to continue to balance alongside work their hopes for their futures. Moving to a new and other commitments. Although home was location, planning new career pathways or the preferred place of death, Sharon prompted encouraging children and mokopuna to follow her nephew to reconsider accessing hospice their dreams helped to ease suffering. Self-care in-patient support when she recognised that plans included whänau taking time out to par- they could no longer manage home-based care. ticipate in other activities that gave meaning Meaning-making is not just about fi nding pur- to life; for example, engaging in sport. Often it pose and hope in the end-of- life process, but was the little things like celebrating Christmas also about the dying considering the stress and or birthdays that people looked forward to needs of those around them. and provided the incentive to stay positive and united. Accessing appropriate palliative care support and resources to assist whänau carers Tangihanga was an essential component that strengthened their resilience. Caring often took place over Most whänau had suffi cient cultural knowl- many months or years. Whänau familiar with edge and engagement with their hapü that they palliative care services (Ministry of Health, could plan tangihanga, burials or cremation, 2010) or who had prior experience of caring and unveilings. This was a major strength as could identify and access support and resources it increased resilience both prior to death and as needed. Knowing when and where to ask post- death as families knew what was expected for help, and who to ask help from, reduced of them. Whänau drew from Mäori death cus- stress on whänau. Good problem-solving skills toms to bring dignity to the dying and their ensured whänau could access support and family. The majority of individuals discussed resources as required. A participant who had and planned tangihanga and memorialising

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preferences in advance with whänau soon after discussed prior to death and where agreement diagnosis. Tangihanga was familiar; most knew had been made between the dying person and what had to be done and how to go about it their whänau. However, not all participants (Nikora, Masters-Awatere, & Te Awekotuku, desired traditional tangihanga or unveilings. 2012). A daughter relied on cultural customs Returning to Allan’s story, Allan did not have after her mother died unexpectedly: a strong sense of being Mäori, nor did he indi- cate attachment to his tribal family or land. He I wanted her [at the homestead] because her wanted to be cremated and his ashes placed brothers and sisters didn’t have the chance to with his maternal Päkehä grandparents in an spend any time with [her] plus we’ve got a urban cemetery because they “had been good huge whänau … The following morning we to him”. Individuals who did not have a strong took her to [name of marae] before moving emotional attachment to being Mäori, and over to [name of marae] where the rest of the those who had strong religious beliefs opted tangi was held. for more Christian or Westernised funeral observances. When the values and beliefs of Pre-death discussions included where people the individual differed to those of their whänau, wanted to lie in state; this was a sensitive topic the individual’s funeral preferences tended to if the person belonged to more than one tribal be upheld. group or affi liated with more than one marae. Some whänau did not meticulously plan the details of their funerals prior to the person Spiritual and religious beliefs dying as their customary rituals were so fi rmly embedded they had confi dence their broader Wairuatanga was a key cultural strength that family would organise their tangi appropriately. most individuals and their whänau drew from Sometimes affi liations were stronger with one to bolster and guide them through this diffi cult side of a person’s whakapapa or with a spouse’s time in life. Wairuatanga took the form of tra- whänau. For some, the desire to lie in state ditional cultural beliefs, religious practices or at a spouse’s marae or to be buried in their more secular new age spiritual variations, or urupä to be closer to the deceased spouse and occasionally, a mixture of all of these. Whänau their tamariki or mokopuna was stronger than placed great importance on spiritual life and it the desire to return to their tribal homelands. was a central component in whänau- centred The expense of tangihanga and negotiating care. Spirituality appeared to be a critical fac- long distances prevented some people pursu- tor in coping with the challenges associated ing this option. The families in our study were with diagnosis, ongoing and often numerous more likely to shoulder all or the majority of treatment cycles, the dying process, tangihanga, the costs, making tangihanga unaffordable unveilings and bereavement. Spiritual belief for some unless they had funeral insurance. systems bolstered whänau resilience by fortify- Satisfying death rituals appeared to provide a ing relationships, increasing morale, infl uencing sense of healing for whänau pani. When death meaning-making, strengthening identity and came, despite some whänau having more urban uplifting the mauri of ill and dying individuals inspired tangihanga, whänau still observed a and whänau. Spiritual practices were used to range of tikanga and kawa refl ecting the iwi- guide, protect, cleanse, clear, fortify, console specifi c customs and rituals of the deceased and and heal. Engaging in spiritual practices pro- their whänau. vided solutions to pressing issues and eased Tangihanga outcomes were satisfactory depression and anxiety. for participants when planning had been fully Karakia appeared most helpful in

MAI JOURNAL VOLUME 3, ISSUE 2, 2014 END-OF- LIFE CARE AND MÄORI WHÄNAU RESILIENCE 149 strengthening families. Karakia accompanied health and palliative care services, some felt daily and customary rituals and were employed isolated and drained by the increasing physi- as a normal part of whänau life, particularly cal, fi nancial and emotional demands that the among kaumätua participants. Karakia were approach of death brings. Hospital admis- used to assist whänau at challenging times. sion or the involvement of hospice or other They were considered healing and helped to services were sometimes viewed as failing the ease suffering as an illness progressed. They ill or dying person. Compassion fatigue was supported whänau’s ability to cope, especially clearly apparent in their narratives. In contrast with receiving bad news or during a death and and consistent with the work of Ngata (2005) through bereavement. Karakia carried hope and Hutcherson, Seppala, and Gross (2008), for the future, which was an essential element those carers with the support of immediate that helped to uplift the mauri of individuals and broader whänau members had a deeper and whänau. and wider well of resource to draw from and Tohu or symbolic occurrences varied signifi - their care was clearly patterned by Mäori cul- cantly and whänau attached profound meaning tural action values of rangatiratanga, aroha, to these experiences. A participant said her manaakitanga, kotahitanga, kaitiakitanga and father’s behaviour presented a helpful tohu wairuatanga. When situated in a cultural web which prepared the whänau for his death: “Well of support, these whänau carers and the dying I thought a week before he died I didn’t think person faced adversity with the strength of it was a good sign like for Mäori anyway, he whänau leadership; open communication; prior was talking to a couple of his dead mates … knowledge and planning; a willingness to work We knew then …” Tohu provided symbolic together and take complementary roles; a unity evidence of the metaphysical realm and helped of purpose; and a connectedness to each other whänau contextualise what was happening and the universe through strong beliefs about in their lives. Critical life changes and transi- spirituality and the afterlife. Being driven by tions often brought new tohu which had to the action values of aroha and manaakitanga be analysed and contextualised. Tohu were means compassionate giving, caring, receiving relational—they provided a means of commu- and sharing are set to prevail. Culture provided nication between God(s), tüpuna and in some whänau with a sense of belonging and a way of cases, the deceased. engaging with illness, dying, death and bereave- ment (Dein, 2006). Reid (2005, p. 47) asserts that Mäori live Discussion in a changing world, illuminating that it is our right to evolve and to change. She asserts the The study aims were to investigate the end-of- Mäori way or perspective of dying, death and life experiences of Mäori and their whänau to bereavement is “plural, it’s diverse, it’s multiple, understand their palliative care needs, cultural it’s fl exible, and it’s changeable”. Our study requirements and bereavement. This study is revealed diversity between and within whänau. unique in that it provides a window on an Some whänau closely observed kawa and more intimate stage in life usually reserved for close traditional cultural customs, while others were whänau, health professionals, and spiritual or less observant in this regard. However, cultural religious advisers. These were private and some- values, beliefs or customs prevailed to some times trying moments demanding personal and extent within all whänau and fortifi ed their collective resilience. Some whänau carers were ability to provide care. alone and without others to share the burden Colonialism has been linked to lower lev- of care. Without knowledge or familiarity of els of cultural effi cacy (Houkamau & Sibley,

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2010), yet carers and whänau in this study understanding of resiliency to inform policy and strove for autonomy and self-determination in structural developments. the face of adversity (Moeke-Maxwell et al., This paper contributes to an understanding 2013a, 2013b). Whänau coped despite the myr- of resilience associated with Mäori whänau pro- iad of medical, economic, social, structural and viding end-of- life care. Rangatiratanga, aroha, systemic issues faced. Social inequity, racism, manaakitanga, kotahitanga, kaitiakitanga and low palliative care health literacy (Ministry of wairuatanga highlighted Mäori values and cus- Health, 2010), whänau demographics (smaller toms underpinning agency and perseverance families to provide care) and structural barriers during a critical part of the life phase. Culture increased carer burden and the risk of depres- plays a vital role in guiding, strengthening and sion and anxiety. Our study shows that the sustaining whänau during the illness-to- dying economic and material ramifi cations of colo- journey (Dein, 2006). However, further explo- nialism impact on Mäori hugely at the end of ration of risks and cultural strength factors are life, directly infl uencing the ability of whänau needed to ensure Mäori have equitable access to identify and access much needed resources to end- of- life and palliative care resources and and palliative care support. Generally, only support to strengthen resilience among whänau whänau who had a family member with a ter- carers. This is likely to support whänau with tiary qualification or employment within a increasing carer demands in the future. health or related fi eld were well placed to iden- The whänau who participated in this study tify and access much needed statutory support, remind us that it is how we care that ulti- palliative care and resources. Knowledge of the mately matters at the end of life. Culturally health system, or previous use of specialist pal- informed care practices bring quality of life to liative care services, increased the likelihood of the dying and dignity to death. But whänau some whänau accessing palliative care support resilience would be helped exponentially by and resources. When combined, these things having equitable access to palliative health strengthened whänau to provide the best care, care services, psychosocial resources and statu- frequently under diffi cult circumstances. tory entitlements, highlighting that resilience is New Zealand’s health care system could multi- dimensional, contextual and relational. strengthen resilience among whänau carers by developing equitable end-of- life and palliative care services and improving their palliative care Glossary information dissemination and communication competencies to improve Mäori palliative care aiga Samoan term for family health literacy (Kidd et al., 2014; Ministry aroha love, care, concern, of Health, 2010; Rauawaawa Kaumätua compassion Charitable Trust Research Project Team, 2014). hui gathering or meeting Conducting further research to identify the risks iwi tribe and resilience factors associated with end-of- life kaitiaki spiritual guardian caregiving could positively infl uence end-of- life kaitiakitanga practice of spiritual care. Cherry et al. (2013) state that “factors guardianship associated with carers’ resilience are not yet karakia prayers, invocations, fully understood” (p. 251). This study involved incantations, chants 27 whänau and used a broad lens of enquiry kaumätua older men and women into Mäori end- of-life experiences: therefore, kaupapa Mäori ideology a larger study dedicated to traditional caregiv- Mäori ing customs would provide a greater depth of kawa protocols, ceremony

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