Kaitiakitanga Assisted Dying Pathway

Hina-te-Ao | Death and Healing | Tikanga

Death is a Familiar Experience

Participants discussed how death and tangihanga were familiar practices for them as Māori. Death and dying tikanga are customs they had experienced throughout their lives which made death part of life’s journey rather than something they feared.

George discussed how death and dying tikanga was learned from a young age; it was discussed openly in her whānau. There were specific people who supported the children when they had questions about death:

Yes, [death] was [spoken about] from a very young age…. So, aunty helped us see our way through and ah making decisions around death and we both lived at [name of place] by then. We were living on [name of place] and did research into deaths on [name of place]. Entertaining stories that occurred on [name of place] about people dying here with some great hilarity. (George, Person who wanted to have an assisted death)

Kanga supported whānau not to be afraid of death and not to fear talking about death:

No don’t be afraid of it. Sometimes people say I’m ‘morbid’. Because I think of it often. But not in a negative way. (Kanga, Cousin, kaumātua)

Linda felt the way assisted dying allowed for whānau to come together aligned with Māori death and dying tikanga (customs):

Ah funnily for us, because the whole wanting to be with her [Mum]… is a very Māori thing to be with them the whole time [they are dying]. And while this [AD] is new, and some might deem it as being ‘unnatural’ so, I cared for my grandmother as well and my Mum in her final stages, I don’t see this as being very different.

You know like my grandmother died in a hospital, she was medicated, family were around her. And she wanted to pass. So, it is very much the same thing. But just probably the scariest thing is just the knowing the actual date and time. (Linda, Daughter)

Māori whānau practice tangihanga (funeral customs) in different ways. ‘Tangi’ is a term that means to cry or weep and is the core word in tangihanga (a customary process to help whānau cry and weep) as well as farewell the deceased. Expressions of tangi may include wailing or subtle cries that release the sorrow and mamae (emotional pain) for the deceased.

An assisted death is anticipated (expected or known) and in some ways whānau may be more mentally prepared for the death in comparison to a sudden death. May described the crying that occurred following her partner Tama-D’s assisted death. It was not of the traditional wailing type, but the expression of sorrow was still present in the room:

But it wasn’t- it was a kind of a- it was quite ah peaceful; it wasn’t an awful crying. It was, I don’t know; everybody was crying obviously but yeah. But not in a way of it just, it was just… I know people that- like my two besties that were here, said that they were just ‘blown away at how beautiful it, beautifully it went.’ (May, Partner)

George commented on the spirituality of death and how assisted dying fits within Māori processes and tikanga. “How it becomes a, not a finality but how you take it from this world to the next world.” Kanga also supported assisted dying for helping people to die peacefully – this is important for the wairua to cross the ārai unimpeded (without any barriers):

[M]y firm belief, is, if you are uneasy before death, it will carry on afterwards in some way, shape, or form. I don’t know how. But I do know that if you die peacefully, then that’s better for you, from a Māori perspective. (Kanga, Cousin)

Assisted dying means the tūroro and whānau can anticipate the death and make tangihanga arrangements in advance. Tangihanga were well organised and protocols were put into place before the assisted dying procedure which meant whānau felt tau (peaceful); they were able to carry out the dying person’s wishes:

When we arrived [at the marae] the whānau were tau [peaceful] and that was the difference. They weren’t running, panicking ‘where’s this coming from; who’s paying, all of this, all of that?’ It was ready [tangihanga] you know. It was like a party. Invitations had gone out. The caterers had arrived. The decorations were up. Just had to wait for the person to arrive. And that’s how I put it to them.

And from then on it just went like that. We ran our own paepae (rituals where spokespeople sit on the paepae [bench] and lead the formal proceedings). My nephew and I we did our paepae and we had many visitors come through. And I explained, I repeated the story, end of life. End of life. (Whare Taonga, Brother)

Silent-Aussie (who had been approved for an assisted death in another country) thought that her tangihanga would remain the same in terms of tikanga – however, due to differences in her friends being non-Māori she thought she would have a different farewell service before she died. Silent Aussie said Māori tangihanga supported a spiritual farewell:

[W]e’ll still have that part at the end of it [at] the home where you know I would be laid out. That, I think [will be] at my daughter’s house… We haven’t really gone into it. Was going to be my place but, you know. But things have changed in a way because I’m now, put[ting] in a date, will put in a date.

So, what I’m looking at doing is doing a farewell, with all my friends to come and farewell. . . But you know. There’re some [non-Māori friends] they’re just like ‘I can’t go into there; I can’t see that [open casket’. (Silent-Aussie, Person who wants an assisted death)

Māori whānau reflected on the days following the assisted death. Most whānau observed their traditional practices, such as staying on the marae and with other whanaunga (relatives) however, only two out of 10 whānau who had an assisted death spoke about the person’s assisted death at the tangihanga, either on the paepae or among the whānau who came to pay their respects.

Jackie-X reported how her whānau stay on the marae for tangihanga. Afterwards a home was offered to the extended whānau pani who had come from out of town to be present for the tangihanga; this allowed the whānau to gather together for longer which was healing:

We stay at the marae itself so we can all stay and then my sister from [name of town] comes with my brother from [name of area] … So, we travel to [name town] and we stayed at ah the [name of home] …Because one of them’s empty and the cousin says ‘yeah yous can have it whenever yous want – we just, koha for the power te mea’ [leave some money for the power and what you use]. And we go ‘oh yeah’ so, we had it there. Beautiful day. (Jackie-X, Sister)

Tangihanga tikanga were conducted as it would with a natural death – only two whānau out of 10 people who had an assisted death mentioned assisted dying at the tangihanga. Ruski discussed how his wife was able to organise her tangihanga with kaumātua from her marae however her assisted death was not discussed during the tangihanga:

Oh, she organised her tangi, she organised- she had you, everything. The, the undertakers. They came around and measured her up. She wanted you know ah, a, a plain coffin. She was, clear in what she wanted. . . Ah no actually no, it was more you know, just the, the normal tikanga [at the tangihanga]. No mention of that [assisted dying]. And that was okay. (Ruski, Husband)

Tania reflected on tikanga employed for her sister’s tangihanga. Unfortunately, some whānau members who arrived just before her sister died took control of her tangihanga without discussing their plans with the immediate whānau who had been closely involved in the end of life care of the tūroro. The careful planning of the tūroro and her kaitiaki were overridden:

Rose [sister] would never really acknowledge the tikanga aspect of Māoridom. I was the only one in the whānau who went down that, that track. Rose, Rose really didn’t because she kind of struggled with it a little bit… and because I actually organised all of Rose’s arrangements as well because what Rose wanted also was that ah, that her funeral be kept as low cost as possible… (more money got left over for her daughter). So, I’d actually already made all the arrangements and everything. And, and that she wanted to only lie here [at home] for one night. Yeah. [ex-partner] and them wanted her to lie here for three nights but Rose was like ‘nah, one night only sis because the longer, I’m kept here the more money it’s going to cost.’

And she goes ‘I don’t want, I don’t want people that I don’t know all over me.’… so, what I’d organised was for her to be not, not embalmed. So, I’d organised through, through a parlour… we laid her out here, not embalmed… I had to go and organise a few things. Then when I got back, [ex-partner name] took over so then all the whānau… all came and [ex-partner name] family came and, and before I knew it my house was no longer mine. I wasn’t consulted or anything . . .

And then of course, suddenly [ex-partner name] turned it into a marae thing and… and I felt ‘whoa, whoa, whoa who’s doing this? It’s my whare [house] you know, I’ll decide what’s tapu in here and what’s not tapu. So next minute bloody people are pinning sheets across up there [kitchen] and …. Cordoning off the kitchen. Putting all the photos down…. Putting greenery all up on the wall… Then having people come in that I’d never [met].

… It felt like a circus… The ones who had been absent all this time – it felt like it just became their, their parade. You know. And so, I’m organising the food and the this and that and bedding; so of course, all they’re doing is sitting there while I’m thinking, ‘well okay thanks, how many people are coming how many things [do we need?] Whoa, whoa! So, I’m organising beds and spaces and full on, making sure people are fed and got somewhere to sleep. Oh, and it got worse because we couldn’t get near her [Rose]. (Tania, Sister)

Linda felt that her mother’s wishes to have an assisted death would not be considered by the broader whānau as ‘good tikanga’ in their rural Māori community; her mother did not want to go to the marae because she wanted to keep her assisted death private. Linda and her whānau decided to adapt their tikanga and care for their mother’s tūpāpaku at their home rather than at the marae; the funeral director gave them her full support:

She was just a blessing and for us to have a Māori [funeral director] available to navigate us through that and to navigate us in a way and [there were] no judgements of us not doing it [tangihanga] in what would be you know… some Māori ah don’t see that choice of [AD] end of life kindly. They don’t see that, so we didn’t take Mum to a marae. (Linda, Daughter)

Kanga said in his experience there were no differences between a natural death to an assisted death when it came to caring for tūpāpaku at the marae (pōwhiri, karanga, whaikōrero, pō whakamutunga, kai whakanoa and karakia) however, he did mention that assisted dying was not spoken about at the tangihanga. Kanga said there was “No, no variation in any way, shape, or form.”

Whānau, we interviewed in the Waerea study considered assisted dying to be part of good palliative care. Many doctors use medication to sedate their patients to keep them comfortable and to reduce pain and discomfort at the end of life. Tūroro and their whānau involved in assisted dying viewed assisted dying as a continuum of good palliative care and saw the assisted dying medical sedation as a treatment to permanently end their loved one’s pain and suffering. However, in some Māori communities, they believe that assisted dying is the same as suicide and is therefore not considered good tikanga. Turama asked her kaumātua about his thoughts on assisted dying.

[His thoughts] on assisted dying and suicide is to push the tangi process through quickly as in not having a tangi at the marae and not being buried at the urupā. In terms of karakia he said, ‘there is no special karakia for this; it’s just the normal karakia to help them journey into Te Ao Wairua.’ Their reasoning for a quick process is so that it is not looked upon as normal but rather to deter whānau from doing it [using AD or committing suicide]. The tikanga is that everyone should strive to live. (Turama, Sister)

Surprisingly for Turama her uncle had officiated at a tangihanga where a relative had had an assisted death, Turama said, “his cousin chose this path, and all the whānau gathered to talk him out of it,” including Turama’s uncle. However, his cousin made up his mind and stuck to his decision. Her uncle did the karakia only. Turama asked her uncle, “but what if they are in real pain and had a terminal disease?” Her uncle replied that they “were expected to keep living until they passed away naturally.” Turama went on to say “It was so interesting, so sad as well. That was hard, but I do understand that some people feel that way”. (Turama, Sister)

When considering her uncle’s comments Turama stated:

I think I may have been lucky he spoke to me about it.  It seems to me it could be one of those topics you talk about one on one. I was surprised though that even he knew someone [who had an AD], so it looks like a lot of people may just know of others who have passed by assisted dying. (Turama, Sister)

Dobby thought that the way suicide is not spoken about in Māori communities is similar to assisted dying – it is a secret:

Well, you know, the funny thing is it’s [assisted dying’s] not talked about, it’s still not talked about … It’s a kōrero that hasn’t taken place and I’m furious about that because it needs to take place… Who cares?… I said to somebody ‘well who makes these decisions?’

They said, ‘you do, you’re old enough now you make the [choice]. I thought ‘oh well’. Anyway, she didn’t approve because that hasn’t taken place that [AD] kōrero, so I don’t, I don’t. Well suicides…can be buried there because we’ve got a few of them in there. (Dobby, Sister)

Maria and Pare argue that suicide and assisted dying are stigmatised and cause barriers to tangihanga; these attitudes are steeped in colonial systems and worldviews:

Whānau if they’re staunch and strong and really have a lot of love for that person they’ll follow through in the tikanga – there’ll be none of that nonsense [not allowing the tupapaku at marae or in urupā] even though it does happen with suicide. You know especially with young ones I think people come down hard on them and they want to suddenly bring back all the old religious tikanga about… being buried…

You know it’s so mixed up that colonial you know colonisation with traditional [views]… if we don’t have our elders and people like ourselves who are in the marae who can correct or direct, redirect some of the kōrero which gets out there which is not right. (Maria and Pare, Community awhina)

Whare Taonga explained the importance of his brother’s āhua which was prioritised in the kōrero at his tangihanga, despite whether anyone had resistance to assisted dying. There was an absence of kaumātua at his brother’s tangihanga:

We did the 2-day tangihanga yeah. . .The āhua was about the man [brother], about his life, about his stories, his humour, his ways. And it was always you know, I, I was the one that put that story in and then everybody filled it with stories and there was a lot of laughter and there was a lot of [love]… we didn’t come across any you know, any resistance of [AD] again though there… was a noticeable non-presence of kaumātua that I would have thought would have been around. (Whare Taonga, Brother)

Jackie-X and Leah felt proud of their whānau for how they handled the tangihanga process for their brother. They did not have any concerns about his assisted death and prioritised and felt fully able to whakamana their brother’s end of life wishes. They then discussed his assisted death at his tangihanga and supported other whānau to increase their knowledge about this new assisted dying end of life option:

Jackie-X: [T]hey [whānau] come in [to tangihanga]; they knew it was his tangi and then when they come away, I think then they had that kōrero [about assisted dying]. Oh, what happened was the cousin got up to speak on the actual day. And he spoke directly to, well whānau [saying] ‘this is one of these unique tangihanga… the cousin has chosen to do this because…’ and he spoke to the whole lot and everyone was like, wow and admiration, I think. And now that they know there’s an option because, look at our whānau, we’ve done it. We’ve come together to do it, we’ve supported it.
Leah: Sooner you can accept that then the tangi will roll you know. And it forces you to accept the inevitable. (Jackie-X and Leah, Sister and sister-in-law)

Whare Taonga said kaumātua offered to take over the tikanga at the nehu (burial) however, the whānau pani wanted to take on these role and responsibilities to whakamana the āhua of their loved one:

And one of their kaumātua come over; he comes over to sit at the paepae for the nehu day and he said, ‘oh so what’s happening?’ And I said, ‘well I’m doing karakia, my nephew is doing the mihimihi and then we’re opening the floor.’ And he goes ‘oh do you want me to do it?’ And I said… ‘Oh no, no, I said no we’ve got it, we’re good.’ We want to talk about my brother. And we want to talk to him, and with the whānau, and we don’t want it to be spoken as a generic tangihanga about you know, because you don’t really know him that well, you only know our family. So that’s why we wanted it like that. And we kept it. (Whare Taonga, Brother)

Traditionally tūpāpaku are laid in their coffin or bed for the duration of the tangihanga; whānau pani and friends can say their goodbyes. Silent Aussie discussed how her tūpāpaku would be laid out but she feared her pākehā friends who are not comfortable with this tikanga.

I don’t have to be sort of laid out. Alright, I think my son and daughter will do it but it’s just for them – it’s not going to be [for] the whole [lot] you know. My friends[are] coming through, and I think really when I think about it, I think they would be shocked to see a body just lying there you know. Pākehā don’t quite understand it… So, what I’m looking at doing is doing a farewell, with all my friends to come and farewell. (Silent Aussie, Person having an assisted death)

George discussed her plans for tangihanga with her whānau and how she would like her tūpāpaku to be cared for:

I talked about the entertainment of bringing people in for the night before. And then taking the [AD] treatment. One of the things that we discussed was ah me being wrapped in the [Māori woven death shroud] prior to me taking [assisted dying medication]. (George, Person having assisted death)

Tania reflected on caring for her sister’s tūpāpaku:

She died in winter… because she wasn’t embalmed, we had to keep the temperature at the right temperature so that she didn’t decompose or anything. . . And she looked beautiful. So, and then not only that to keep costs down, I helped wash and dress her and [ex-partner name] helped me as well. So, we washed her, dressed her and laid her out here. (Tania, Sister)

Whānau discussed how the person’s wishes were honoured regarding where they wanted to be buried. Traditionally tūpāpaku would be buried in a whānau urupā (ancestral burial ground) but the wishes of the person were upheld if they chose a different location.

Some whānau were surprised by the requests made by their loved ones before their death. Whare Taonga discussed how his brother preferred to be buried with his mokopuna rather than at the urupā. Whānau were able to honour the mana motuhake of the tūroro:

He decided on that; he didn’t want a minister. He told us where he wants to get buried which wasn’t a place that we were all thinking to go to [name of town] but he wanted… be buried next to his mokopuna out near the [name of place]. So, we just said ‘well we know what he wants, let’s do what he wants.’

Tania explained how some of her whānau buried her sister’s ashes, despite some issues with other whānau members. This allowed for their sister to be safe with her deceased mother and allowed some healing for the whānau:

[W]e’ve actually already had a ceremony her ashes; she’s now safely buried with our mother… we went to the urupā, had the ceremony, did a karakia… (Tania, Sister)

Turama commented that today many people adapt their burial choices and sometimes contemporary adaptations of tikanga are necessary. These changes may mean death and dying practices have to adapt too:

I talk often to people here about cremation because you know Māori have that view that you shouldn’t be cremated and even my own family. And my dad was cremated and they were not happy with that and my belief is – his choice. You know that’s what he wants… a lot of our tūpuna from [name of rohe] were cremated …. and so, you know where [people] get the idea that it’s not tikanga I don’t know… I’m like, well it wasn’t tikanga to have a wooden coffin either, so you know, where do we draw the line? (Turama, Sister)

Upholding the wishes of the tūroro after someone has died is a most important tikanga for whānau. For Mr Zion’s whānau felt proud sharing his courage to have an assisted death:

Leah: Our role was “honouring his life talking about assisted dying.”

Jackie-X: Exactly that, to whakamana their wishes. (Jackie-X and Leach, Sister and Sister-in-law).

Linda recalled her mother’s wish was to maintain her mana after her assisted death. Linda made sure her wishes were upheld:

She said she couldn’t speak for all Māori but for her she just knew this was going to be something she wanted. She didn’t want to have to resort to other ways of doing it. She didn’t, yeah. She knew that she wanted to uphold her mana. (Linda, Daughter)

Jackie-X commented on how her whānau upheld their brother’s wishes of an assisted death highlighting the importance of aroha as a value that underpinned the tikanga they followed after Mr Zion died:

And I think the overpowering part was that it was the love of our brother. This is what he chose, and we love each other. And we were never that whānau; so, you know if he said he wanted a tangi in an aeroplane. . . Exactly that – to whakamana their wishes. (Jackie-X, Sister)

Some whānau experienced tohu after the death of their whanaunga (relatives). These tohu supported healing for whānau and could be understood as the deceased’s wairua (spirit) communicating with them beyond the ārai (veil).

Whare Taonga reported how four weeks after his brother died, he experienced a tohu from a pīwakawaka (fantail); this was a sign that his whanaunga was communicating with him beyond te ārai:

After his tangi [short form of funeral] and everything and I was back home. I was doing some mahi and a manu came in; it was a fantail. And it came through because I’ve got big back sliding doors that just open up… And pīwakawaka come in and I was sat at my computer and it come in and [stood] at the desk and I looked at him… and then it took off. And I said ‘okay [Mr Zion], I’ll get it sorted.’ Picked up the phone, [to his ex-wife], ‘get the kids together, I’m coming down this weekend. I think my brother’s been tapping me.’ So, you know came down with the will and I read them the will… So that was the part to settle. And then I kept some of the pūtea for his unveiling. (Whare Taonga, Brother)

Linda explained how tohu showed up for her daughter after her mother died and her daughter found them very comforting:

You know [daughter’s name] speaks of the pigeons coming; you know we had every tohu around us. (Linda, Daughter)

Tania reflected on communication from her sister after her death. Tania saw this as a wairua message:

I went up to my sister’s [place]; stayed up – got, got my other sister, but my other sisters were exhausted. Got them back here. Made sure they were all comfortable with that. Went and slept there. And then the next day something weird happened. I got a text from my sister [who died] which is impossible (my messenger went off and it was like, ‘okay you’re dead = that shouldn’t have come through…’ I don’t know how it come through…I would say it was a wairua message. (Tania, Sister)

Manaia asked her mother to send buttons to her once she had crossed the ārai as a way of communicating with her:

So, I told Mum, asked mum, if she could send buttons and beads and so, she does. She sends buttons and beads… very spiritual. I did say a prayer for her as she passed. She asked, me to do. But as a family we wouldn’t normally pray. (Manaia, Daughter)

Maddie, Tracy and Sarah kōrero about the loss of their sister and daughter and feel her presence daily:

“She’s here with us… She knows this [AD research] is a good thing.” (Maddie, Daughter)

Linda discussed the importance of tikanga around practical health and that tikanga can be changed and can adapt over time:

I have learned since that lots of tikanga is just around practical health and safety aspects and times have changed so maybe you can shift that tikanga. It’s [tikanga is] not- it’s not albeit law of our Atua and they’re not going to get struck down by lightening. (Linda, Daughter)

Part of protecting her [Mum’s] mana was upholding mine. Because, I would say to her, ‘you get to go, and I have to live with it Mum.’ So, not around her choice, like these were around lots of choices that she wanted. And I would even say to my husband you know like, ‘how do I live with this? How do I live with this?’ So, so me being part of this [AD research] is me finding somewhere to put it. This is very important to me that… for me to carry on… for her to carry on, and to… maintain our beautiful relationship and this is a piece of, a final piece of this journey that she took is to put it somewhere and she was very much into if she could help someone.

Tikanga Recommendations

Tikanga can be Flexible

Maria and Pare reflected on their experiences of learning tikanga around tangihanga. Maria mentioned how Pare’s kuia would acknowledge when it was necessary for tikanga to be adapted but it was always done safely. This highlights that whānau can adapt their tikanga to suit assisted dying:

Maria: … in… the world of te ao Māori when Pare’s mother used to teach us stuff and it wasn’t quite normal to, to do certain things she’d always find a way, to make us safe. … we call it ‘breaking the rules’, but we would always be made safe by doing what we
Pare: Needed or wanted.
Maria: Needed to do or wanted to do. So, I mean whatever she did, water whatever that she used. And I look at today’s Māori, and you know educated – some of us are not steeped in the traditional ways. But I can think that we can always find a way to make it right, to make it normal. (Maria and Pare, Community kai awhina)

Kanga described his cousin’s assisted death as a good tikanga and aligned with a te ao Māori perspective of being mana enhancing: Whānau want to feel more welcome on the assisted dying journey. Having access to information and support during the assisted dying assessment could help them to feel more included in every part of the process. Mere’s whānau struggled with the assisted dying attending medical practitioner prioritising the tūroro over the collective presence and voice of the whānau:

I consider myself somewhat versed in a wide range of Māori things. And as I said to my extended whānau that this experience is something absolutely new to me. I and I really, for want of another word, I thought it, a good tikanga. Very empowering for the individual. And very, dignified. Ah I, I really… want of another word. I really enjoyed [cousin’s name] passing which sounds really, really, kino but, it was so ngāware, so mana enhancing for him, and for his whānau, and I think that’s important.

They were allowed the opportunity to farewell their most beloved koroua in a way and manner of their choosing. You know they weren’t constrained by the hospital or machinery. It was at home, it was in a place where they’re comfortable, where he’s comfortable, where they decide and it’s all about choice. And they could express that choice as freely as they wanted to in their own home. And that’s what I think was powerful about that experience for me. (Kanga, Cousin)

Maria and Pare highlighted the importance of discussing end of life options at tangihanga to remove whakamā around assisted dying:

[B]ecause [Māori] we’re very- we have a whole tikanga you know… very strong values around tangihanga. I think it’s absolutely appropriate to kōrero about options and or discuss and it. It’s because we haven’t; it’s not been a big part of our lives, I think. You know it’s never been an option that we’re not [aware of] until we hear [AD] and people may initially feel, I think some stigma or negative shame you know, whakamā [and] be too whakamā to kōrero… My belief is, is that I always felt that a decision like that is, it’s a decision of the whānau.

There’s an aspect there that whānau may help the decision ah you know for that individual. And I personally felt quite strongly about not doing that because I didn’t understand the framework around it or the tikanga around it. It’s a whole other matter if it’s done in a way that’s respectful and, and has a lot of you know – upholds the mana of the whānau and that person. Then that’s something we should you know I suppose in that situation (where you’re getting to 6 months, and things are looking very difficult) then whānau should be aware… (Pare, Community kai awhina)