Kaitiakitanga Assisted Dying Pathway

Hinauri | Whānau Tikanga During Assisted Dying
Declining Health Mamae and pōuri

People who had a terminal illness suffered greatly from emotional pain at the end of their lives. Tūroro had to think about who would be impacted by their decision to have an assisted death and what support they would need during and after their death.

Moerangi (sister-in-law) defined ‘pōuri’ in relation to the emotional state her whanaunga experienced when he wanted to ensure his children were safe and cared for before he died:

I think [pouri is to] sink, sinking into a bit of a dark, dark space. Very alone… But also carrying quite a deep burden too, I think for him. . . Unfinished business- you know what was going to happen with the kids? (Moerangi, Sister-in-law)

Tania (sister) discussed the cause of mamae in her whānau (not necessarily due to assisted dying) but in part due to the responsibility placed on the whānau caring for the tūroro when there was no access to respite:

Mamae comes from- she wanted, she was in pain and she was terrified of the breathing and when you’re nursing her 24/7 and hospice beds aren’t available! Like my other baby sister you know we’re nursing her now because there are no hospice beds. Hospice now is the place for the dying. But the imminent, immediate going to die in the next few hours, few days or so! Gone are the days when you could go to hospice and have a bit of a respite, the family. Those days are gone. Families are it now, and that’s the scary part we’re it. (Tania, Sister)

Tek, his sister and daughter spoke about the pōuri that is associated with a life limiting illness; assisted dying provides an option that can bring solace at the end of life:

Sister: The assisted dying is great, you know I’m comfortable with that and… It’s just so good that he will have the choice; they don’t have to suffer.

Daughter: Finding out about his diagnosis that was really hard; that was horrible because it was like with our mum [dying]all over again. But him telling us he was going through assisted dying, that was just kind of like yeah, that makes sense. Because like I don’t think we ever had like a conversation about the referendum. We just all separately voted ‘yes,’ because it’s yeah like he said, ‘it’s logical’.

It seems like, silly to me that it was even illegal in the first place so that was kind of a no brainer. But there was- it was, a bit hard because it was even though I voted for this and I understand why he’s making that choice, why like anyone in that situation would make that choice, it’s still hard because it’s my dad. But we, from, have always supported him and supported his choice. (Tek, sister and daughter)

Tiaki discussed the mamae of having a life limiting illness with her husband; these discussions about her end of life options are not how Tiaki would like to spend the last period of her life:

So, whenever we talk about this, it puts us into a painful future that hasn’t happened yet and I think it’s entirely possible for us to waste my last life, last bit of life dreading, feeling miserable, projecting. So, it’s hard to balance having those conversations and we know we need to do it [assisted dying]; we need to do it around the advanced care planning. (Tiaki, person who wants an assisted death)

Among other things caregiving for Māori whānau is underpinned by values of manaakitanga, kaitiakitanga, awhi and aroha. Whānau tikanga are often guided by their kaumātua. Huia reflected on her role as the kai arataki (leader); in her whānau this leadership role has always been undertaken by a female in her family. She felt her caregiving role for the assisted dying process was no different than caring for someone who died from a natural death:

Yeah, I guess that that’s what it is yeah. Not just because my parents made me. I probably already was that person and then- but I know also a lot of older siblings, friends, they are, have been that same person so…Yes we do see that in my work there’s an aunty, or a couple of aunties and the aunties have as much if not more say than the husbands say or the, the kids (depending on the age of the kids). It’s quite often the aunties that are making things happen, making the decisions or saying ‘no, no, not, not like that, that’s not how we’ll do it’. (Huia, Daughter)

Whānau created schedules to allocate caregiving roles and responsibilities to care for tūroro. Schedules meant that whānau could share the caregiving role. However, some whānau members had to take primary caregiving roles due to others having young children that needed to be cared for or spouses who were so grief stricken they were unable to provide care. They provided manaaki to the tūroro and the whānau pani:

[My sister has] got a baby who’s just turned one. So, she was off the roster for staying the nights [with Mum] because she had a little baby. So, a, a lot of it did fall to me. [Mother’s partner] went to pieces, he couldn’t… he just said, ‘I can’t, I can’t deal with this.’ Because at the time we were told that Mum might not have another 24 hours or you know. (Huia, Daughter)

Te Iringa and her whānau also took on the responsibility of caring for her mother before she died and companioning her helped the family grieve:

We were told, each whānau member ought to have a night with Mum. Every night she was in hospital somebody was with her, and you know, just listening to people’s kōrero in there; like my whānau, their kōrero and their feedback about how it was, what was their experience, what did they talk about. So, it was all of that and it was, I suppose a nice way to deal with that process in grieving, and you know, while she was still with us. (Te Iringa, daughter)

Whānau would often organise hui (meeting or discussions) about end of life care and the end of life wishes of the tūroro after they were told about the tūroro’s wish to have an assisted death. Hui would be organised with and without the tūroro; hui helped whānau to understand the tūroro’s reasons and wishes for an assisted death. When hui were without the tūroro present, opinions and emotions were openly discussed amongst whānau so as not to burden the tūroro or coerce their decisions. Whānau used hui as a way to increase their understanding, and they used the information to collectively plan and prepare for the next steps. This normally involved seeking an assisted death physician and gathering further information about the assisted death process.

Participants reflected on how hui were organised to promote discussions and kōrero about assisted dying:

And of course, our family when we like to gather, we like to socially gather with a drink. No, kai first to have our kōrero, and then we can have a drink. Oh, okay ka pai. then, [brother’s name] knew what was happening but none of us knew. And then we all sat around, and he got up he spoke again. ‘I called you fellas here to let us know that I’ve chosen… taken the choice of life… assisted dying.’ (Jackie-X, Sister)

Jackie-X reflected on how the hui meant whānau could create a plan that worked for them, as well as gather their thoughts and ask questions about the process which they would take to the assisted dying physician:

So, the plan got made Wednesday night. ‘Okay whānau we’re going to leave; the whānau are going to go back to the marae, we want to get ourselves ready and prepped into our blacks – oh get ourselves ready because the van [carrying his tupapaku) will be leaving the house Thursday. The doctor’s coming in at 11 o’clock, tomorrow morning.’… And everyone’s going ‘what’s going to happen, how does it [AD] work?’…

Then [brothers name]’s going ‘we’ll have karakia of course, karakia before the doctor arrives and while the doctor’s here, we’ll sing waiata. And we have more karakia and, we want the immediate family only inside… then the rest of us can sit out because we had marquees set up at the back of the cottage and the rest of us can sit out here and just be here for the whānau. Yeah, yep, we can do all that’.

And then so we all went home Wednesday night, still a bit [of a] stunned mullet and trying to plan the tangi and what [is] everything, who’s doing what…. (Jackie-X, sister)

Whānau hui supported whānau in their understanding of the assisted dying process, procedure and upholding the wishes of their loved one. Mere reflected on the hui that took place within her whānau and the importance of kōrero and kai to bring everyone together to support her nephew’s decision:

So yeah, we, we mulled over it. We ah wanted to learn a bit more. Couple of my cousins jumped on the internet and pulled out some information. We went over to [nephews] just about every night to have a kai and try and talk some more not to dissuade him just to feel right about it. I think it was just so that we were all, on this journey together. (Mere, Aunty)

Ngā, daughter of George, spoke about the importance of hui with whānau to support collective decision making and understanding the tūroro’s assisted dying choice:

That’s a big part because people don’t have- not all whānau have hui about what they want… And you can see that with whānau when it comes to that time and they just, they’re falling to pieces and they’ve still got to organise all the things. But it starts with the person being comfortable to talk about it.

So, you know Dad had a hui like six months beforehand; Mum’s had a hui like years before. Yeah, yeah, she had a hui with us years ago when she was travelling a lot and wanted to talk about when she travelled overseas what we should do so. Yeah, we are very lucky that our parents have been open like that with us otherwise yeah, I can imagine geez, be taumaha [seriously ill] and not to say it’s not going to be taumaha but at least we’ve been guided… (Nga, daughter of George who wants an assisted death)

Some participants thought that whānau might have differing opinions about assisted dying and there could be some differences of opinions regarding tikanga. Dobby thought that assisted dying was a great way to relieve unbearable suffering, but this option did not necessarily support Māori worldviews. The criteria upheld mana motuhake of the individual, not the collective:

I like the idea of assisted dying… to minimise or even eradicate or remove any pain that [sister] would need- would suffer unnecessarily… As long as of course the person is 100% on board…and is, is, is competent to make that informed decision then… I would support it… the only thing is of course, you know given whānau are often, you know larger numbers it can be quite a, ah, yeah a, a difficult territory to, to navigate with all the different ideas that you know – views about it; that would be difficult. (Dobby, Sister)

Maria and Pare also reflected on challenges associated with decision making in assisted dying, and how for some people if there were underlying issues or disconnections within the whānau it would be more difficult to obtain collective understanding to support this decision:

My belief is, is that I always felt that a decision like that [AD] 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 [end of life], and things are looking very difficult then whānau should be, aware…’how do you do that?’ You know but, lot of whānau we, we’re prepared for all of my uncle’s tangis, Mum and Dad’s so we were like that as a whānau because we’re not disconnected. It would be really hard if you’ve, had ah, you know, struggles and troubles. Or you know, have had abuse, have had trauma, especially if you’ve been in State care. How hard is it to go to your whānau with these very sensitive things? (Maria and Pare, Whānau community kai awhina)

For Moerangi, the hui with her whānau about assisted dying brought up mixed emotions of anxiety, whakamā and conflict. If the assisted death had gone ahead, she believed it would have created a lot of mamae for her whānau:

It is, it’s like a life, life experience kind of flashing before your eyes… And, and then, I think for some of our whānau there may have been some whakamā attached had, had it been a, a route that we’d gone down… for my particular whānau. Ah, conflict is the only word I could use. There, there would of been, there would of been conflict. (Moerangi, Sister-in-law)

Whare Taonga explained that the end of life and the assisted dying language was difficult for whānau to understand. He had to use tikanga and te reo Māori to explain it to whānau:

It took, it took a while to get that, that kōrero around to them. And then you know, amongst the tears and the understanding and then going into that next process … Oh [I brought the korero] around back to him about, about him, about ‘this ngāngara that was in him and how this ngāngara [something foreign, reptile] was eating away and there was no way of any medical advice and services that we could do to prevent that ngāngara from eating any more of our brother.’

[I said the assisted death can help] ‘releasing him of the pain that he’s in and the deterioration of his whole being’. I said ‘and that’s what we look after each other for when we’re sick to prevent all of that but now, we can’t stop that. No one’s going to be able to prevent our little brother from this ngāngara. And so, this is what’s going to happen and this is his choice’. So, I explained to them about [the] end of life option. I said, ‘he’s undertaken and has been approved [for AD] and will be taking the end of life option.’ (Whare Taonga, Brother)

Moerangi recalled how assisted dying was discussed by her whanaunga who had an incurable terminal illness and that the term ‘assisted dying’ was not used in the whānau hui. Moerangi also reflected on her concern that some members in her family would be very opposed to assisted dying and yet the family had a responsibility to advocate for him:

But yeah, he, he, he [brother-in-law] changed a great deal, and, in that moment, you know he verbalised it in a way without saying the actual words ‘assisted dying’… It was ‘oh my God, he’s just verbalised it. Oh my God what are we going to do in terms of managing this as a whānau because if he really does want it, then, there’ll be some, some fractions of our whānau who will agree with it and others who will be very, very opposed?’ And that would require us to advocate for him… in that decision. (Moerangi, Sister-in-law)

Some participants were unsure whether Māori would choose an assisted death because assisted dying does not align with Māori caregiving and dying practices; the focus is on whanaungatanga – caring for the terminally ill until their last breath:

[I don’t think many Māori would want assisted dying] because of our culture, because of our tikanga, because of our, the way we live, the way we carry on, the way we, yeah, we talk.

I actually talked about it with one of the guys this morning and he said ‘that’s just the way it is you know. It is the way it is that’s how we’ve been brought up that’s how we, we live. We eat it, we breathe it as a whānau and then to have lost, to have to live with the pain, to carry on living with the pain, to carry on seeing our moko, to our last dying breath. To be able to smell and to taste our kai, our kaimoana you know’.

My nanny when she passed you know, she couldn’t eat that much but as long as she got the kaimoana you know we, we fed her until her last dying days and we were all around her, she was surrounded by us, so yeah. (Janice, friend of someone who had an assisted death)

Janice thought that Māori who had wrap-around care from their whānau would not necessarily need or want an assisted death because their whānau would be able to offer end of life care and keep them comfortable until their last breath:

Our whānau are there to always awhi (cherish), awhi us. If you were brought up the way we were brought up, we never ever yeah… our whānau always been wrapped around us. (Janice, friend of someone who had an assisted death)

Janice discussed how assisted dying and not been a part of Māori tikanga historically, nor should it be part of our death processes now. However, she reflected if Māori were to apply and use assisted dying their whānau would still support them in their choice; because she stated that the tikanga of whanaungatanga, kaitiakitanga and awhi is a greater tikanga:

[Assisted dying] It’s not our tikanga, it’s not the way we’ve ever done it; we’ve never done it like that… to be honest even if, oh especially here [rural place] if someone Māori had turned around and got [an] assisted death oh everybody would be around, but everybody would get it hard and fast when they’ve passed. (Janice, Friend)

Whānau felt that the tikanga of upholding mana was more important than the shock or weight of the choice of an assisted death. Acknowledging the importance of mana for the tūroro and dying with dignity was important:

It wasn’t like the gravity of it, like for him [Grandfather] it was an out. But for everyone else it was a massive, like it was a massive thing, and it is a massive thing, but I think he, for him it was his control of it – he was reclaiming that control. . . So, like all the kids that kind of understand, that knew what was happening. (Olive, Granddaughter)

Carlos acknowledged how the assisted dying process afforded his grandfather’s mana to be upheld and he was able to die with dignity:

I think just his stoicism and stuff you know, like just how strong he is as a person and how, how he’s always been that to me through my life you know. I think he’s always had that, that presence…. Yeah, yeah, exactly yeah and I think ah, he you know, he’s the, yeah, he’s just always had that strength to me and he, he’s a role model for me. (Carlos, Grandson)

Janice recalled her conversation with a Pākehā friend who wanted an assisted death and how this mana wahine knew what she wanted and went for it. Janice thought assisted dying may not have aligned with Māori death and dying tikanga, but her choice aligned with her mana motuhake:

I said to her ‘do you really want to do this?’ And she goes ‘yes, I do’. You know and for us as Māori… to see that, to be present and to watch this strong wāhine that I knew that that supported me a lot… yeah for her to, to end her life like that it was, yeah it was different, it was a bit of a- it was different. (Janice, Friend)

Tiaki wanted an assisted death because she believes it supports her as a wahine Māori to die with dignity:

I mean it’s reassuring. I looked up, I looked up the drugs, the combinations. And how they maintain dignity you know which I thought was really lovely. (Tiaki, Person who wants to have an assisted death)

Te Iringa reported how her mother wanted to go ahead with an assisted death. Te Iringa then brought the whānau together to discuss her wishes and the plan for her end of life preparation. All the whānau went to the GP with their questions following the whānau hui:

[I] talked with her and I says to her ‘Mum, do you still want to go through with this?’ And she said ‘yes, I do.’ I said ‘Okay. You leave it with me and I’ll, start working through this process’. The next step was to call a whānau hui. So, oh by that time everybody in our whānau knew Mum was in hospital so they were making plans to come up anyway and come see her. So, once all our whānau got together I actually called the whānau hui.

So, once all our whānau got together I said to them ‘Oh look this is what Mum, or Nan’s, wishes were. So, we have to have this whānau hui and I’d like to document it and minute it so that I have evidence that we have discussed it.’ So, we did that. We did all of that. And then the next thing after that was to have a whānau hui with the GP. So, I, I actually brought my aunties and uncles, my mum’s siblings on board to come and tautoko as well us whānau.

So, we all had this whānau with her GP and um other medical staff there. … Yes. Yeah. So, we didn’t just have a hui with the GP and the other medical professionals, that wasn’t just the only hui we had. We had whānau hui after whānau hui just; it was my way of updating or reporting back to the whānau, but it was also about making plans and preparation. (Te Iringa, Daughter)

Whare Taonga spoke about his brother’s choice to have an assisted death, and how it was an important choice grounded in his mana and what was best for him:

And I said, ‘yeah so you understand the process of applying for the end of life?’ He goes ‘yeah, they’ll just assess mel; they’re going to send out two doctors that I’ve never met before and they’ve never met each other and I’m going to have a kōrero with them.’ ‘Okay’ I said, ‘we will, we’ll have a kōrero with them aye?’ So, we organised the appointment and then there was myself and [ex-wife] his ex-wife and they were looking after one of the mokos in the room…

I knew we were told not to talk in this [meeting] unless we were asked by the doctor. So that it didn’t look like we were intruding or any influence on what ah [Mr Zion] wanted. And ah my brother’s kōrero was very succinct. Very true to everything that he said. And had mana. And I was so proud of my brother the way he spoke. Because he took charge of his life. And there was one, one time that I knew that [is] your decision, no one else can change that decision but you. And that’s how proud I was of him to make that decision. (Whare Taonga, Brother)

Hinemoa and Tutanekai reflected on how their mother and cousin, Sophia Loren’s declining health and suffering brought forth her desire for an assisted death. Before she was assessed she received a blessing from a kapa haka group who sang her a special waiata which was written by her mother; this beautiful koha opened up a mamae (emotional pain) and she experienced deep mokemoke (loneliness, isolation) for her deceased parents and siblings:

Hinemoa: One of the first mamae that I remember for Mum in this stage [health declining] was that her mother wrote this song … Mum alluded to that previously sung [name of competition] And what they did.
Tutanekai: They won.
Hinemoa: And they won. And what they did was they offered Mum to go over there to pre-rehearsal, to a proper dress rehearsal.
Sophia Loren: And they all dressed up.
Hinemoa: To honour her yeah.
Sophia Loren: In their uniforms that they were going to have. (Hinemoa, Tutanekai and Sophia Loren)

Whānau often reflected on how their loved ones described visual and sensorial experiences that connected them with the spiritual realm before they died. Tūroro often saw ancestors and loved ones who had passed away. Sophia Loren wanted an assisted death. She discussed her experiences of communicating with her ancestors and whanaunga during her declining health. The whānau thought her wairua experiences were a tohu (sign):

Hinemoa: And the other day Mum, Mum was telling Tutanekai and I that she saw her koro in his proper Māori [gear]; he was full Māori. Mum, Mum’s koro [was] in the, in the hall there. And she was hoping to God he’d come to get her and then she saw two aunties [in spirit].
Tutanekai: Two aunts yeah.
Hinemoa: Yeah, two aunties sitting here. As clear as you are now. Mum’s explaining all this to me. And one was, I was lying here at the time. And Mum saw me lying here and said that I was talking to another cousin of ours, [name]. And then Mum saw all these ants, she actually could hear their feet – all the ants’ feet over here… that pissed her off, so she had to get the fly spray. Anyway, that’s another side issue.
Hinemoa: It’s a wairua experience. (Hinemoa, Tutanekai, Daughter and cousin)

Sophia Loren and her daughter Hinemoa spoke about their late koro who was a tohunga, and how we would visit her along with other tūpuna:

Sophia Loren: And that’s why I saw my grandfather… and he died long before I was born… We all revered him in our family… And strangely enough it was my koro [who visited], and he was a tohunga. You know he was a tohunga. And ah, my two cousins, who we all know really well. And that was [person’s name] who was my mother’s (their mother’s my and my mother’s) sisters. And we already know the [person’s name].
PI Researcher: So, you knew exactly who they were?
Hinemoa: Yeah, ‘clear as day’ Mum said.
Sophia Loren: Not, one of my sisters, not my sister who just passed away last year.
Hinemoa: You can’t pick who comes Mum.
Sophia Loren: Āe?
Hinemoa: You can’t pick who comes.
Sophia Loren: No, I said.
Hinemoa: They just come.

George describes her experience with connecting with ancestors and loved ones who have passed away. She saw this as a common wairua experience for Māori at the end of life:

It becomes quite natural when you’re, experiencing trauma that you will have these ah spiritual levels of connection so, for me with the, assisted dying I’d say there are things that will happen and they are happening now. One of those is being able to communicate with those over there and already I have. And I tell my kids about it. Been talking to those who passed in front of me now. They’re not, they’re not, humans in the, in the make-up. They’re not humans. And I’m trying to portray this picture that doesn’t involve humans, the creation of humans but there are these beings that come and go and they lead me to places, and I am in the position of calling them… asking them to wait because I got shit to do before I get in that row.

And so… this experience, is one of those things that I think happens frequently with those who are getting close to passing, passing over… I yell and I kind of [get] squeal-ish because deep down inside I can feel whatever’s happening in here [body]. I need to be in communication with the Spirit world. And I think we don’t give ourselves enough credit to be able to do that without feeling stupid.

So, I, I’ve actually said to my kids ‘just let me do it. If I yell out, they come you know’ and I really don’t need them [kids]at all. And we so we have these experiences and I think the spiritual experiences that are mine, that happen to me, are to alert me that these journeys are taking me where I need to be. (George, Person who wants to use assisted dying)

Whānau reported that alongside hospice care, palliative care and whānau caregiving practices rongoā was used as a tikanga to support oranga at the end of life:

Tutanekai: I think there is miri (massage); I think they had something I’m not sure
Hinemoa: Yeah, we do, we have that. (Tutanekai and Hinemoa, Cousin and daughter)

Whare Taonga recalled how rongoā was practiced throughout his brother’s declining health to manaaki him even though the prognosis was terminal:

Yeah, (rongoā) it continued right up until the- we got to the steps that we wanted to undertake. I was there to provide him with support, manaaki and clarity when there was no clarity with him. To provide him with that and so we went through and the specialist diagnosed him as having [name] cancer. And then from that prognosis we had to walk away and think about some of the kōrero that was given to us and then we were given to another group of people to start talking about how you know, how can we manage, how can we treat it, and is there treatment? So, I stayed with him throughout that whole journey. (Whare Taonga, Brother)

Death and dying from a Māori worldview are unique within, between and among Māori whānau. There are many reasons for these differences; for example, there are historical, regional differences and different iwi and hapu approaches to death. George reflected on her understanding of death as a natural and spiritual process:

And then some [people come] with a lot of fear and that’s the reason I talk about the spiritualness because you, you’re actually given to be very fearful of death and from a spiritual aspect that’s not, not a good thing really to be, and a lot of people are forced to be fearful. And I think, the fearfulness comes from Christianity. I think religion, those religions actually create that fear of death.

And, for me I didn’t want to be fearful of death. Because I’d been brought up with, you know, you didn’t go to the marae as a, as a kid. None of us ever went to the marae and if we did go to the marae, you had to go stay at the nani’s house until you were picked up by your parents and that’s, that’s what happened. And if you, on other occasions, after the burial you were allowed to go to the hākari and that’s the only time you had participated in that tangi. But anyway, death to me was something that was quite a natural process (George, Person who wanted an assisted death)

Hiri discussed how assisted dying had some alignment with Māori death and dying practices:

Oh, I think, I think they’re on the right track with the wairua going to… whence we came, whether we look at the Christian value God is (is something different though for me). I’m more of the spiritual [sort] yeah, I’m more inclined with a te ao, te ao Māori influence on the spiritual side. So, you know looking at our trees, our land, our whenua, our ngāhere, you know, the air that you breathe. The universe that we’re in. Te Io Matua te Kore you know that that’s the big bang theory, from way back! (Hiri, Son)

Kanga explains that for Māori death is an extension of life, not the end:

I understand that death is an extension of life. It’s just in another shape and form which we do not know what it is. But it is, I do believe that human life does continue and if I apply the Māori kōrero, for whaka whiturangi which is ‘gone to be as a star in the heavens’, then I’m reminded of the ah physics component and kōrero of a great physicist who I happen to hear speaking about the ingredients of the human blood is made up of exactly the same elements as that of the sun.

And then I think about the Māori kōrero, and then the two converge. . . So, death then has no end. . . It’s not an end. We just go back to being as elements in the sun. . . I think of death as putting life into perspective. Every day, I accept death is coming fully and unreservedly. So, what death does, it gives me a focus on life. When you, appreciate how fragile life is, then you accept that death is inevitable. And that is a natural part of the order of life. It gives life more meaning.

And it allows you to live better in terms of everyday and do things which are important and which make a difference for others I think it’s important. (Kanga, Cousin)

Select whānau often become the main support people for tūroro at the end of life. Kaitiaki became the gate keepers of the tūroro’s wishes and they help to keep them safe. Linda reported how her whānau became her mother’s main support:

Because we became the in, the inner sanctum. So, there was me, [eldest daughter] and my husband. (Linda, Daughter)

Mere spoke about her involvement supporting her nephew in his end life choice. She emphasised the importance of learning about tikanga associated with tangihanga:

I was sort of wanting to offer some guidance to, to my nephew because his connection with our whānau had been severed. He hadn’t learned the reo in his later years; just the last year before his life he became interested. He was- the, the appetite to learn those sorts of things had started to, to be, to flourish in him.

So, I was really curious because death and, and tangihanga and the process of preparing for, for death, I didn’t know a lot about from a Māori worldview. But I was really interested to try and figure out ‘well, how did we do it?’ You know our understanding of, of death now being able to talk to tūpāpaku and all of these things that we do, still today. What was the context around that was sort of what I was trying to figure out. (Mere, Aunty)

Tane said he felt he needed to support his father’s choice to have an assisted death and to be there for him at his end of life:

I mean very oh [assisted dying doctor was] very straightforward. He [assisted dying doctor] just told me what Dad had told him in regard to how he had made up his mind…. he’d told me and I was very supportive about it and said, ‘I’d do the same thing myself’… I felt that was my role to, to find out what he [Dad] wanted to do in all regards leading up to the death and after what, what his, what his sort of wishes were… (Tane, Son)

Whare Taonga reported that his brother’s immediate whānau were his unit around him during his initial decision to have an assisted death and this helped to settle his mauri:

We brought them together at [Mr Zion]’s place; so, his mother in law was still alive, and father in law… and they knew it was about, they knew it was going to be about their father because they knew he was seeing a specialist. So, some of them knew and some of them didn’t know. . . it was just that at first because they were… they were his unit around him. . . His immediate whānau. So ah, so yeah, we did that and we did it in a, in a tau (gentle way). (Whare Taonga, Brother)

Whānau caregiving practices are informed by tikanga. However, some whānau have reported that having whānau take care of them at the end of life reduces their mana.

Sophia Loren spoke with her daughter Hinemoa and cousin Tutanekai about the mamae she felt being cared for by Hinemoa; Sophia Loren felt she lost dignity because her daughter had to provide her personal cares and she was a very private person. Sophia Loren was concerned that her whānau had lost work incomes for taking time off to help her:

Hinemoa: And Mum struggles with that. That hurts her, her, her mana having me to have to shower her and dry her it’s something that she would rather not happen.
Sophia Loren: And she puts my pads on all the time. Ah, nobody else would do that.
Hinemoa: Everybody would do it in a heartbeat, but you wouldn’t allow it.
Sophia Loren: Oh, she gets no money you know she has to work for her family. (Hinemoa, Sophia Lorena, Daughter and mother)

Hinemoa’s mother’s mana felt diminished. She did not want to be cared for by whānau at the end of her life:

Mum is- she was really proud. They’re extremely private and she’d only let me shower her and she hated that. She absolutely hated me showering, having to have me in there showering her. (Hinemoa, Daughter)

Tūroro who wanted an assisted death were described by their whānau as independent, determined, intelligent, stoic, brave and often a person of high status and importance in the whānau; they had often cared for others. Organising tangihanga and making sure tikanga was upheld was of the utmost importance for tūroro.

Steven, Harris and Potiki (husband and sons) said their wife and mother prepared kai for her own tangihanga. She bought and stored food and had frozen food so the whānau did not have to worry about catering for her tangihanga after she died. Their wife/mother prepared kai for all whānau tangihanga and she observed this tikanga for her own tangihanga to remove stress from her whānau:

Steven: … She needs to be in control, that’s why she’s, finding it so hard to give up [living]. I mean she’s already thought [of] the process for the tangi so, I, I’ve got a little music room and half of it’s got food in it.
Potiki: It’s all ready to go.
Steven: Freezer’s full of food for it. She’s organised a pig and a cow.
Harris: Lunches and dinners.
Steven: Yeah, she’s the one that would be doing it all. Whenever there was a tangi was always, was always us in the kitchen. Nobody else, more or less. (Steven, Potiki, Harris, Husband and sons)

Initially, Mr Zion’s grandmother stepped in to take over the role of preparing the tangihanga kai and hākari duties, however, Whare Taonga felt the whānau needed to hold off and have a hui first with Mr Zion to ensure his wishes were being prioritised. Tikanga in tangihanga and hui is important in all death and dying practices:

We had one of their grandmother organised kai… and they’d brought some ah ina, ina and I said ‘oh taiho [wait]’… I want to have this kōrero first because you know it’s important we do this… because it would upset him [brother] if he couldn’t be in the same room. (Whare Taonga, Brother)

Tiaki discussed how she was unsure whether there were specific tikanga around choosing a date for the assisted dying procedure which made it difficult for her to plan:

It’s less about picking the time and date and more about whether there’s any ritual around it. Because ritual would demand certain things of them. Of, of anybody really. (Tiaki, Person who wants an assisted death)

Whanaungatanga is an important value for tūroro and their whānau to feel supported by health professionals. To feel safe, caregiving should be aligned with Māori whānau death and dying tikanga. Tania thought the nurse practitioner that cared for her sister Rose prioritised whanaungatanga which supported trust, comfort and rapport at the end of life:

She [hospice nurse] already had a very strong connection with, with Rose and with us. Because when she’d come, we’d have meetings. (Tania, Sister)

Tikanga Recommendations

Cultural safety
Whānau recommended that the Assisted Dying Service should support cultural safety and competency in administrating the End of Life Choice Act (2019) by providing cultural support if needed by whānau. Ani suggested that tikanga were necessary for whānau pani who may be estranged from their cultural knowledge and tikanga practices. The need for cultural support could be discussed during the assisted dying assessments:

I kind of assumed that within… an assisted death we know the timeframe so we can [prepare for tikanga]. Because I know there’s been a few deaths in our whānau, natural deaths, or sudden deaths, and we haven’t been able to get someone, or somebody hasn’t got there quick enough to say a karakia and that’s been devasting. You know so I ah, just kind of assumed that with an assisted death we know the rough time [someone will die] and that tikanga would be in place. (Ani, Sister)

The assisted dying clinical pathway supports whānau to uphold their tikanga during an assisted death. Assisted dying attending practitioners and attending nurse practitioners support whānau to carry out their tikanga (they often leave the room before they administer the medication to give whānau time to be together, to say their final words and to have karakia, waiata and other forms of cultural expression), however, not all whānau have retained knowledge of their death customs and not all have access to cultural support.

Because assisted dying is new, and it is a medically induced death, not all whānau may feel confident prioritising their customs while navigating the assisted dying procedure. It may feel strange or difficult to observe spiritual rituals when the tūroro is so alert. Importantly, some tūroro may not want to observe any tribal or spiritual tikanga before, during or following death. There are kaumātua who are tohunga in the wairua space, but they do not support or want to encourage assisted dying:

I mean matua [name] he’s our kai karakia for everything and he does this often I think, he goes to the hospitals, he does karakia. But I’ve never spoken to him about you know, the tikanga [for assisted dying]. I’m just not sure if it was a topic I wanted to bring up but I do feel that they are not burdened, but they take on a lot- of.

0h, you know it’s quite taumaha and like even the police, there’ll be an accident nearby – the police drop in, … [they] don’t even you know [say] ‘hello matua [name] we need you, there’s been a death on the road.’ And he goes straightaway, him and whaea [name]. They go straightaway, they see what they see, some of it’s not pretty and they do what needs to be done in terms of karakia and karanga. (Turama, Sister)

What Tikanga Should be used at an Assisted Death?

Mere thought that if whānau were made aware of the Assisted Dying Service and had more time to process the procedure and assessment that they would be able to organise their tikanga for the death and tangihanga. Some whānau felt there was not enough time to prepare for the assisted dying procedure because they were still grappling with coming to terms with their whanaunga having an assisted death, and everything that entailed. Trying to understand what an assisted death was took all their attention and no time was left for planning what tikanga would be appropriate for an assisted death:

I think… had we been given more information we probably would of been able to kōrero better as a whānau to just really absorb what that was. And not only that to put in place some tikanga of our own that… wasn’t there – it just wasn’t there… if he [nephew] had of lived to the point of the [assisted dying] date … and they would of turned up, we would have been a mess you know.

[We]wouldn’t know whether we would karakia, we wouldn’t know whether we would waiata or have any form of a pōwhiri of some sort for these ones [assisted dying attending medical practitioners] that are coming to do the deed. None of that was even talked about because we were still trying to come to terms with what it was. So, there was no opportunity for us to make sure that whatever, huarahi [pathway] we had chosen to see this part out, there wasn’t the opportunity to do that, to plan for it. (Mere, Aunty)

Moerangi thought assisted dying resources could support whānau in their decision making and tikanga:

If there are resources available you know… resources that are, that are, that, that we can engage with as whānau we don’t need clinicians to, to help us do that but with resources that explain to us that those kind of challenges and, and the fact that what we may be living with afterwards, after that decision and how we, how we might approach, trying to come back to some sort of sense of kotahitanga (unity) afterwards. (Moerangi, Sister-in-law)

Whānau would like to see wānanga to discuss assisted dying in safe environments to enable tūroro and whānau to learn about assisted dying and to ask questions.

Having a space where people have chosen to be there because they want to learn and you create a very beautiful space. Open with karakia to set your intention, close it down so everyone’s tau as you leave but yeah, have and have the experts there to answer their questions. But speak to them about it [AD] to just help, enable them to make their choices. (Linda, Daughter)

Mere also commented on the need to have safe places for whānau to korero about assisted dying in a safe environment led by experts in Māori assisted dying experiences; marae wānanga would be the most obvious venue:

We, we need to have safe places that we can have these sorts of kōrero, and those safe places are those places that we can talk about things… we’re doing this now on marae we’re talking about donating body parts and sexual abuse and just these things that we might not of spoken about so freely before. This is one of those kōrero that we should be able to have in the sanctity of the marae.

And we need those people who hold the information to be able to give it to us in a way that makes it safe… I’m not sure that, when you follow such a very strict clinical well let me put it this way, when you’ve got medical staff that are not culturally competent then why are we expecting them to do this sort of thing when they’re just not capable of it? So, who, who is it then – where? What do we do? What do we do? Do we train up these people? Do we train more of our people to take these roles? I’m not, I’m not quite sure what the kaupapa is. (Mere, Aunty)