Māori elders’ perspectives of end-of-life family care: whānau carers as knowledge holders,weavers,and navigators

Subtheme 1: protecting spiritual and cultural wellbeing

This subtheme describes the expertise enacted by and accorded to older whānau members in end-of-life whānau care. Older whānau members’ spiritual and cultural experience and knowledge of Te Ao Māori accumulated over a lifetime were central to whānau care. As one woman’s plea to her children demonstrated: ‘Never leave out your aunties and uncles. You are somebody when you have the (. . .) old people behind you. They give you dignity and can advise you’ (K05 F). With support from older relatives, whānau carers enacted the principles, values, and practices of Te Ao Māori to protect spiritual and cultural wellbeing (hauora). Another carer stressed a holistic approach to hauora: ‘[The] medical thing is alright in its place, but (. . .) you gotta have that wairua aroha (spiritual love) (. . .) to lead, guide and direct you, to know what is best’ (K15 F). She concluded that protecting the spiritual dimension of wellbeing was not only ‘just as important as the medication’ (K15 F) but came first in determining ‘what is best’ for relatives receiving care. Another kuia (older woman) also described her response to her aunt’s distress:

She would look in one corner of the room and (. . .) then the other (. . .) I would ask her what was wrong. She said, ‘They’re all around’. And I would say ‘Who’s all around you Auntie?’ ‘Oh, Mum’, her grandmother and her father and they were all there. And I said, ‘It’s all right. They haven’t come to frighten you. They’re not frightening us’. (K14F)

By insisting that the visions were ‘not frightening us’, the niece normalized the experience and confirmed the spiritual dimensions of the situation. Such spiritual and cultural guidance and support, although often the knowledge domain of older whānau, happens when whānau (of any age) are in tune with wairua.

Subtheme 2: enacting relational knowledge

Providing care for whānau in palliative care was also shaped by intimate relational knowledge whānau members had developed over time. The first layer of relational knowledge refers to whānau members’ awareness of and deference to the preferences and needs of the person in care. This relational knowledge positioned whānau as the natural first carers; as one participant noted, ‘as a whānau (. . .) we think of ourselves first to do it instead of asking outside the family’ (K01 F).

Deference to care needs was significant in the broad context of tapu (sacredness) and noa (ordinary). Because the head is tapu, certain tikanga (protocols) do not allow contact with, or passing ‘ordinary’ objects over the head or touching by others (without express consent). Carefully observing correct practices was essential when ‘old fashioned’ (K01 F) and ‘old-time’ (K02 F) Māori men insisted that ‘only his wife touches his body’ (K02 F) and ‘looks after him’ (K15 F) rather than using a nurse. In one instance, the wife bathed her husband when needed; in the other, the wife had her own bed at the hospital (K15 F).

The value and respect for kaumātua knowledge meant that whānau carers privileged the autonomy of the older person receiving care and deferred to him or her when making care decisions. As one kuia said, ‘My father (. . .) wanted to be fully aware of what was going on; he didn’t want the morphine, so we took it off him’ (K14 F). The same kuia reinforced her mother-in-law’s choice not to die at home because she thought she might frighten her young grandchildren. In contrast, another kuia supported her father’s decision to die at home without using palliative care services: ‘We took him straight from the hospital after midnight (. . .). He wanted to go home then and there because they [hospital staff] didn’t think he was going to last the night’ (K01 F). In both cases, the whānau members supported their father in the face of contrary health provider advice. These situations lead to the second layer of relational knowledge in this care role: sharing knowledge with formal service providers.

The frequency and time spent caring afforded whānau carers an intimate, first-person knowledge of their whānau member in care. One kuia said this knowledge meant ‘we may know something a little bit better than, than they [services] do (. . .) we may have another suggestion that they haven’t got’ (K05 F). Similarly, another explained the importance of challenging medical personnel when they failed to address the needs of the person in care:

Sometimes there are things that you know best, for your whānau, you know best (. . .) The doctor said, ‘You gotta use it’ and I said, ‘No (. . .) I’m not using it. Can’t you see the pain that he’s going through when you put him on that hoist?’ (K15F)

After 25 years of marriage, the wife knew how to read her husband and used her relational knowledge to challenge the care practice. Although the doctor may have been concerned about the wife lifting her husband without a hoist, she prioritized his needs.

In another example, a kuia commented that in the ‘20 years [my sister] looked after [our father] (. . .), he never had a bedsore [while] he was bedridden’ (K02 F). This care knowledge ensured that their father was well looked after at home and later on in hospital when ‘she was so persistent in (. . .) looking after his toiletries’ (K02 F). A koroua (older man) noted that hospital staff were impressed by the program that his youngest daughter set up: ‘The hospital said, “Gee, we should have had you working here” because it was all about getting (. . .) to work out all medication that [my wife] was to take (. . .) so there was no pain the whole time’ (K04M). Relational care expertise directly positioned whānau as primary carers.

The third layer of relational knowledge involved learning from formal sources. When whānau carers saw the need or opportunity to enhance their role by adding new knowledge to their cultural knowledge and lived experience, they were open to learning specialist care techniques. As whānau carers noted,

It’s not easy taking care of a sick person, if you want to wash him you [have] got to lift him (. . .) the palliative care they know how to turn them without hurting them. (K05F)

We as a family can only do so much. The rest is up to the nurses and the doctors and it’s good to know that they are there. (K01F)

Both carers acknowledge professional providers’ skills. Another carer commented, “I got frightened the first time my mother got physical with me and I sort of forgot, (. . .) after I calmed down I, said [to myself] (. . .) “You know how to do it. You’ve been taught how to [manage] your mother” (K06 F).

By adding formal care providers’ know-how to their own cultural and relational expertise and choosing how and when to use it, these participants developed new knowledge to better care for their whānau members. Overall, however, this theme demonstrates the importance of a lifetime lived in Te Ao Māori, which enabled whānau carers as cultural and relational knowledge holders to play a critical and leading role in end-of-life whānau care.

Subtheme 1: weaving whanaungatanga (connectedness)

To weave whanaungatanga (connectedness) and care, the whānau drew upon and replenished others’ spiritual energy (wairua) in everyday actions. Whānau members wove wairua into the collective fabric of whānau connectedness and care by gathering, attending to emotions, and sharing song (waiata) and prayer (karakia). Whānau members noted that ‘the environment became positive when we were all there together’ (K15 F) and ‘there was no (. . .) negativity within the room, because we are a caring family, and because that’s our father sitting there, grandfather, great-grandfather [koro] (. . .) everybody felt for him’ (K02 F). Participant K12 F said she felt the ‘energy of the wairua’ and ‘all those people in there are lovingly helping you’. Thus, the closeness in being together with their koro enhanced whānau ability to care.

Emotional and spiritual support for other whānau featured in these gatherings. One kuia shared: ‘At night before we had karakia [prayer], we talk about the day’s events and then before we have karakia, we ask if anyone wants to say anything and how they’re feeling’ (K01 F). She also said, ‘All the mokos [grandchildren] used to get together and have a big family thing and have (. . .) kapa haka [cultural song and dance]’ (K01 F). Another koroua mentioned his father’s older brother (tuakana) ‘bringing other whanaunga [relatives] with him and they had karakia’ (K03M). A kuia emphasized the importance of a whānau member with ‘a peaceful whakaaro [thoughtfulness] (and) good mānawa [warm heart]’ (K05 F) who could calm emotions in stressful situations. In being together, whānau drew on whānau wairua, and by talking, praying, and singing together they replenished their wairua. These elements were important, especially when facing competing needs.

Subtheme 2: weaving responses to competing needs and roles

This subtheme concerns whānau caregivers nurturing the interconnected strands of spiritual, physical, and relational wellbeing for whānau members. To maintain the holistic hauora of the whānau member in care, whānau members wove whānau wairua by ‘calling in’ and excluding whānau members at different stages of care. Sometimes, these different stages involved balancing competing care, relational, cultural, and emotional needs of whānau and the relative at the center of care. For instance, when participant K03M accidentally found out that his brother had cancer, he called on senior whānau to support younger family members caring for their dying parent, even though the younger members wanted to exclude them:

My tuakana [older brother] (. . .) got cancer and he never told anyone, not even his wife. When his family found out, he only had a few months to live. It became very emotional for them to accept what was going to happen with their father. They couldn’t act because (. . .) they became too emotionally involved; all they could think about was he was going to be gone, taken and so all they wanted to do was lock him away and tie him down (. . .). I just happened to come along one day and I said, ‘What do you mean ‘just family’?’ and I said, ‘Yeah well, we’re his family (. . .) He’s got six brothers and two sisters and where are they? I’m the only one here’. And so, I organized for his brothers and his sisters to come. (K03M)

Whānau were not able to share their wairua with each other when some members were excluded. Disharmony resulted when families ‘hug their own whānau and not let it out (. . .) don’t let others in to awhi [surround, embrace]’ (K12 F). This vignette, however, shows how the participant called in his brother’s other siblings, and wove together wider whānau care and thereby supported his brother’s children.

In some situations, whānau members had to exclude other whānau to protect the wellbeing (hauora) and wairua of the relative in care. In one instance, senior whānau members worked hard to manage whānau needs in the face of end-of-life wishes of their mother:

Our mother said, ‘No more singing, no more talking’, so we had to stop the whānau from coming in. They didn’t like that; there was a lot of kōrero kino [disagreement] saying that we (. . .) didn’t want them to see their grandmother. But we had to explain things nicely to them (. . .) you know, we’re all emotion[al]. . . but we stood, stood our ground and (. . .) it had a calming effect. (K05F)

In this case, the needs of her mother took priority over the needs of younger whānau members and the wairua of the situation was maintained. Although everyone was emotional, this kuia and her whānau drew on their respect for their mother and their standing (mana) within the whānau to ensure their mother’s needs came first. This situation highlights both the whānau tensions and stress when meeting their loved one’s needs and the role of kaumātua in speaking respectfully to whānau so that emotions are not further heightened by what is happening. The whānau were asked to respect their grandmother and her wishes, and to leave the disagreement (kōrero kino) behind.

Central to these situations, however, was upholding the mana of the person in care by respecting their standing within the whānau. The first situation offered an example of respecting whānau relationships, and the second, of respecting the wishes of the person in care. Although both cases could have resulted in diminishing the standing of the different whānau members, including the person in care, the outcomes were such that the mana of all was upheld as the whānau members came to accept new roles in a changing situation.

When dealing with competing needs within the whānau, parents, aunties, and uncles exercised their respective positions, cultural and relational rights, and responsibilities. Even so, some whānau found it hard to let in others who could support them with the care role.

Subtheme 3: weaving together practical whānau support

The third subtheme focuses on how whānau integrated and coordinated various types of support. Integrating practical support required whānau to coordinate contributions and ‘all work together’ (K05 F) to maintain the care space. It was generally accepted that ‘it’s your whānau, you just do it’ (K12 F) and ‘family is the first that you call on to help’ (K05). Whānau coordinated who was present in the primary care space and there were ‘advantages of having a big family’ with ‘tak[ing] it in shifts’ (K01 F). Participant K02 F explained how it worked: ‘We always had someone there, if it wasn’t us, it was my brother, if it wasn’t him, it was my nephew’.

Weaving together practical support also involved whānau offering material, informational, and financial support. For instance, instead of hospital food, ‘we always got our food brought in from our families’ (K02 F). In addition, whānau kept ‘a basket of fruit for the kids (. . .) we’d organize that ourselves, for anybody that came so that nobody would go hungry’ (K12 F). Whānau also shared information about services: ‘My cousin [helped] by printing out each area [if] we need any help’ (K01 F). When K18 F’s mother was dying, ‘my husband reconnected [her] phone so that we could have access to the telephone’.

Financial support was often crucial. Some whānau talked about challenges in looking after extended whānau as well as their partner, parent, or other relative receiving palliative care. Koroua K09M’s situation was not unusual:

A lot of my family came home to stay at home waiting for [my wife] to pass away thinking it was only going to be a couple of days and they stayed right through that whole four weeks. And you know, feeding family—it was real hard.

Likewise, participant K05 F observed that ‘sometimes our families they don’t even have the means. They’re already bogged down in bills’. In these situations, ‘whānau helped. We needed the bit of money too and that was what our whanaunga [relatives] offered us, the support and sometimes a little bit of money and kai [food]’ (K03M). Care was a call (karanga) to bring whānau together in close and challenging situations where all contributions to support the whānau member in care and whānau involved in caring were important.

Subtheme 1: communicating in Te Ao Māori and medical/palliative care worlds

This subtheme captures the communication challenges faced by whānau, who had to manage the, often incommensurate, cultural divides between Māori and medical-palliative care worlds. Several participants noted their ability in managing the divide. For instance, participant K05 F explained, ‘I can look at things from a Pākehā [European New Zealander] view, and I can look at things from a Māori view, because, first of all I’m Māori’. Here the kuia acknowledges the dominant system while proclaiming Māori as her primary worldview. Other participants also valued Māori perspectives that needed to be respected and mobilized within palliative care provision. As participant K18 F said, ‘I think we are unique in being able to do that and to teach Pākehā a thing or two about palliative care from a Māori perspective’.

The inability of most formal care providers to navigate both cultures meant that it was usually up to whānau to overcome cultural divides. Participant K0 F5 implied that medical-palliative care professionals did not always show respect for whānau decision-making processes and values, when she said: ‘They need to have a consideration for the whānau, what we like, what we desire, and our culture (. . .) because it’s important to be working with us’. Participant K14F mentioned,

I’ve found the foreign nurses are better to work with. They can relate to us, whereas our own tauiwi [European New Zealanders], they don’t know how (. . .) Some have been good, but you only need one and it throws you out and then the whānau get angry and they wonder why.

She followed up with a poignant example where a doctor’s lack of respect for the whānau’s decision to maintain life support failed to acknowledge their mana and ignored the tapu of the whānau member in care:

[The doctor] said, ‘If he was to have a heart attack, did we want to revive him?’ I said ‘Yes’, because we wanted to keep him for as long as we could. And she said, ‘He could come back as a vegetable’ and I said, ‘Well, that’s our problem. It’s not yours, it’s ours (. . .) Well, you’re playing with our wairua when you’re doing that’. (K14F)

Together, the participants’ experiences illustrate everyday challenges that whānau carers faced in communicating values and principles of Māori worldviews within medical-palliative care worlds. In so doing, participants’ comments highlight the apparent inability of healthcare professionals to appreciate Māori worldviews.

Subtheme 2: negotiating access to medical/palliative care services

This subtheme shows how whānau need to communicate across culturally distinctive care worlds shaped how they negotiated access to palliative care services. Several participants (e.g. K02 F, K03M, K05 F, K09M, K11 F) alluded to cultural discomfort and direct racism experienced as whānau carers and users of the dominant health system. Against a backdrop of stereotyping, whānau carers’ access to and experience of the system was frequently negative. K03M offers his perception of an interaction with a Pākehā health professional that illustrates the prevalence of the negative framing of Māori men’s health:

I thought I should go and get checked out, well I mean I’m overweight (. . .) the Pākehā [European New Zealander] [thinks] ‘Here’s a Maori, he’s overweight, he’s over 60 and he’s a smoker and he’s a male. You know, there’s no hope for you boy’.

This comment illustrates the effect of living within a dominant non-Māori culture where prevailing descriptions of Māori and Māori health are negative. Such prior experiences with the health system help to explain participant K02 F’s response after her husband was diagnosed with cancer: ‘because I was in a Pākehā environment, there’s no help for me anywhere’. Her perception was that the Pākehā health system, being non-Māori, could not meet her needs.

Yet, even with the burden of confronting dominant culture perceptions, some whānau carers were not afraid to ask questions, advocate for the whānau member receiving care, and control care quality and cultural appropriateness. Questioning often occurred at the beginning of a terminal diagnosis. Participant K06 described, ‘constantly asking questions (. . .) we are very good at asking questions, we want to know. You got to ask questions so you can make life easier for the carer and our Mum’. Likewise, Participant K02 F insisted that when interacting with nursing or other staff, ‘if you don’t get any satisfaction, we go through the doctor’. Here, the whānau used the dominant culture care system’s hierarchy to escalate their requests.

The care role also involved advocating for the relative in care when whānau perceived that care decisions were inadequate. For example, participant K16 F described a situation: ‘we had a change of doctor [who said] ‘Oh no, we’re not gonna operate’. So we had the big haka [in this context, a protest or “noisy fuss” ⁵³ ] again (. . .) everyone ignored her again, the nursing staff ignored her’. In another, the medical team sent K02 F’s father home to die, and a week later, he was trying to speak:

My sister and brother-in-law (. . .) took a photo of him on a camera, a movie of him wanting to eat and they took this camera up to the hospital and showed this doctor, and that’s when he said, ‘Bring him back. We’ll put in a butterfly [needle left in the vein for intravenous medication]’. Those sorts of things you [have] got to do yourself.

In another example, participant K06 F’s whānau also had to ‘push’ for hospital care, because whenever they took her to hospital, she ‘had to leave again’. When the whānau finally took her to the Emergency Department, ‘from there they took her up to the ward, they assessed her and then next minute they’re telling us she needs to go to another ward, that she’s not going to last too long’.

Finally, whānau attempted to control the cultural appropriateness and quality of care, because ‘each death is an individual situation and (. . .) [if] family can be in control of their loved one’s leaving, that makes a big difference’ (K04M). When the medical team confirmed that further treatment could not ‘fix’ the underlying renal condition, participant K14 F decided that ‘We are taking our father home now’, despite the doctor ‘storming out’. Controlling care also encompassed physical care. When participant K02 F’s whānau returned to the hospital, they found that ‘he was still dirty, and we blew them up. (. . .) when our father is dirty you clean him straight away, not two hours later’.

The subtheme highlights whānau experiences of negotiating for culturally appropriate quality care within a Pākehā health system. The situations illustrate the cultural motivations and values and communication efforts of Māori whānau carers.