Kaitiakitanga Assisted Dying Pathway

Hina-te-Pō | Assisted Dying day and Procedure | Tikanga

Saying ‘Goodbye’ is a Good Tikanga

Like tangihanga following a natural death, whānau of all ages, including grandchildren and great grandchildren gathered to say goodbye to their loved one before the assisted dying procedure. Gracie, Carlos and Olive discussed how some whānau found it too hard to attend the assisted death. The whānau understood why some people could not attend the procedure for an assisted death; others stepped in to manaaki the tūroro on the assisted dying day:

Gracie: I think Dad just wanted like us whānau in [city] as well as his [cousin] to be there on the [AD] Day. He would have loved his sister and his ah [nephew] to be there too, but I think they found it very difficult, to actually be there for the day…There was, how many of us?
Carlos: Close to 20.
Gracie: [Nephew] was there to represent his father because his father was … too unwell to travel… it was good to have him there. And all of [name] and [name] kids you know the nieces and nephews and the children.
Olive: And their partners and children.
Gracie: Yeah, and that’s who Dad wanted to be there. (Gracie Munro, Carlos and Olive, Daughter, Grandson, Granddaughter)

Tracey, Maddie and Sarah spoke about the importance of whānau being together in the last moments of life. Maddie’s mother died naturally within hours of her assisted dying procedure taking place. Maddie was there to give her mother her blessing to leave her body (die) and then she died:

She, she waited for Maddie to let her go. Do you remember? Maddie said to her mum ‘it’s okay. I’ll be alright’ and she just, and she just went, just like that… She kind of just lingered and lingered and lingered and we thought ‘oh you know, this is just too much, it’s too hard for her’ And then Maddie just spoke out and said ‘Mum, it’s okay. I’m going to be alright’. And it was just, seconds later she [left]. (Sarah, Mother)

Whānau had to develop their own ways of sharing the assisted dying news with everyone. This could be challenging telling children or people with mental health problems and the very elderly or ill. In the following example a mother, father and grandmother discuss how they told their young grandson about their grandfather’s scheduled assisted death; being open and honest about what was happening and allowing their young son the choice NOT to attend the assisted death proved to be the right approach:

In terms of the kids, we didn’t want to lie … we didn’t want to cover up what was happening. So, we tried to talk to him [son] in a way that he would understand what was happening. …we were quite surprised at how he reacted and Carlos [husband] did it in such a lovely, lovely way he had a chat like the night before with [son] and said that we were ‘going to go and celebrate Granddad’s life with him and he physically wouldn’t be with us anymore but spiritually he would be.’

[Son] was amazing… he said he didn’t want to be in the room when it happened but then after it happened, throughout that, the rest of the afternoon we kept finding him just going and sitting with [grandfather’s tupapaku] and holding his face and [grandson] was amazing. Like and all the kids were like- I think all the kids who understood like obviously.

I think that was important to everyone of not, like hiding what was happening like, involving the kids as much as they could understand was important. (Olive, Granddaughter)

Making jokes and telling stories is a helpful tikanga – it is a Māori way of easing tension and temporarily lifting the weight of grief during bereavement. Because people having an assisted death are alert (they must be able to consent) they often had dialogue and were reported joking around with their whānau up until they died. Olive, Carlos and Gracie recalled how their father (and grandfather) made light-hearted jokes to comfort his whānau during his assisted death.

Carlos: [Assisted dying attending physician] came back with the, with the drink I think it was aye? Yeah.
Gracie: Yes, yeah.
Carlos: And Granddad’s just like ‘oh yeah, cool! Knocked it back. And then he said, ‘If I had of known it would taste like this, I bloody wouldn’t have gone through with it!!’
Gracie: He said to us, ‘yuck!’
Carlos: And everyone just laughed – it was just classic Granddad, ‘oh bloody hell’… kind of thing. He was always the guy that would [swear] like because he’s obsessed with rugby, so he’d just swear at the TV…
Gracie: The room erupted [with laughter]. (Gracie, Carlos, Daughter, son)

Ruski discussed how his wife had organised her tangihanga before her assisted death. On the day of assisted death, she took her time to give advice to their tamariki and mokopuna which provided a good laugh for the whānau before she died:

On the day it happened there was probably, four whānau who [were] around her and she was lying on the couch and then, she just ah went, went around the room picking out the ones that she wanted to give advice to and, and in the end everybody instead of crying we were all laughing because she was picking on these ones [and telling them something humorous). (Ruski, Husband)

Joking about dying was something that also happened when people were planning for their death. Sophia Loren had been declined an assisted death because although she was old and frail, she did not have a terminal condition that would end her life within the next six months. She discussed her tangihanga plans with her daughter and cousin, Hinemoa and Tutanekai. They discussed the need to celebrate Sophia’s Loren’s life with a party and made jokes about her tangihanga:

Sophia Loren: I’ve told the kids, I want no-
Tutanekai: Sad!
Sophia Loren: No crying.
Tutanekai: No sadness.
Hinemoa: No, we have to be happy, happy.
Tutanekai: We have to have parties and singing.
Sophia Loren: I want the happiest you know-
Hinemoa: And celebrate your life ae. You hear that all the time, the actual celebration.
Sophia Loren: That makes it hard, of course, I might be unhappy if I’m in my coffin, in a funeral parlour that I’m going to and see her telling jokes. I might get up!
Hinemoa: And join us.
Sophia Loren: I might get out… ‘[Hi] you two! I’d love to do that. ‘Hi! Where am I?’ Yeah. (Sophia Loren, Tutanekai, Hinemoa, Tūroro, cousin, daughter)

May explained how Tama-D made the whānau laugh on his last breath. This alleviated some mamae felt by the whānau:

He went really peaceful and he just did a snore! We all laughed… He did a big (sound of a snort) and then, and then he was gone. . .But we all laughed when he did the big snore!! (May, Partner)

Karakia and waiata are two main spiritual tikanga that support whānau when someone is approaching the ārai (veil), during the dying phase and following. Karakia can be used to open and close the sacred dying space, to set the intention of the kaupapa and to create a safe space for the tūroro who is transitioning, as well as providing spiritual protection for the whānau and others that are present in the room/space.

Waiata (songs) are religious hymns uplift and settle the mauri (energy life force) of whānau. Karakia and waiata are used to bring whānau together, connecting them strongly and protectively with the spiritual realm; it brings a spiritual connection to past, present and future generations and ancestors.

Jackie-X said that her whānau had karakia and waiata throughout Mr Zion’s assisted dying process:

We had karakia in the morning when we had all arrived, we did our morning karakia… and we were singing, and the sounds were going. But then when we run out of songs yeah, we put the sounds on so the mokos were running around through the house, giving Pāpā his last kiss… I don’t know if they really understood, but they did understand [at some level]. (Jackie-X, Sister)

Some whānau members took on tohunga (spiritual leadership) roles to support whānau pani in their tikanga during the assisted dying day. Kanga was invited to be present at his cousin’s death. He spoke about his role and how he prioritised the tikanga of his immediate whānau on the day (he did not say specific prayers said for the dying). He explained he was in their whare and went on their tikanga. However, he felt that waiata was important for lifting the heaviness and suffering in the space before and after the assisted death:

I took the organic ngāware path and just went with the flow [on the day of the assisted death]. I did ask his [cousin’s] granddaughter if she would sing some waiata… before and after. It was a beautiful process to be honest. And she sang a song which [cousin’s name] and his late wife you know, it was their courting song. . . Because it was a bit heavy you see on the, on the [way] when he passed.

There’s a certain heaviness that comes over people around. Because of their suffering from loss even though it was, they knew it was coming, when eventuality happens there’s a little bit of heaviness there. And sometimes a waiata can help lift that a little bit from their shoulders. (Kanga, Cousin)

Linda reflected on how she accommodated her mother’s wishes with music and whānau support on the day she died:

I was on one side with my two girls and Mum. We were able to talk to her; the kids played music as this happened. (Linda, Daughter)

Ruski’s wife had the support of her whānau on her assisted dying day. She had karakia performed, however, she maintained her tino rangatiratanga when whanaunga wanted to play hymn which was not what she wanted to listen to as she was dying:

[My] brother in law’s ah a layman in the Catholic church and he did a bit of a karakia and then he wanted to- he was going to start a, a hymn and she said ‘I, I don’t want that. Honey (she said to me), put my music on’. And so, we had a, we had all her music on, all that she wanted done. And so, she went out singing. (Ruski, Husband)

Carlos, Gracie and Olive also sang waiata on the assisted dying day which brought everyone together; it became an important memory for the whānau:

Carlos: Yeah, and we sung.
Gracie: We sung some waiata.
Carlos: Waiata and stuff yeah it was-
Olive: One of my favourite memories of that day was, sorry I get upset. [Name of person] who has a beautiful voice sang lots of waiata and then there was one that our son loves to sing a lot, but [person] didn’t know it and so [son] started to sing it. And then… his two cousins who are 10 started to sing it and that was, so special to have all three boys just sing this one waiata that they all knew. And no one else really knew [it] but it was, one of my most favourite memories.
Carlos: Yeah, he [Granddad] was alert, yeah. (Gracie Munro, Olive, Carlos, Daughter, Granddaughter, Grandson)

Preparing for death was a time that tūroro may have cultivated a stronger faith in their Christian beliefs or tribal wairuatanga. Linda discussed the importance of fulfilling her mother’s spiritual tikanga even though this was not Linda’s belief:

She [Mum] wanted to learn the Lord’s Prayer; she wanted to listen to hymns… So, I’m not particularly religious in the Christian sense but, her faith was her faith so we would accommodate that. (Linda, Daughter)

Jackie-X recalled the assisted dying day and the tikanga that were practiced by the whānau. These tikanga supported the whānau and tūroro during their bereavement:

After karakia we have Pai Mārire and [Mr Zion] was there, ah sitting with us, and he even asked his nephew… ‘Nephs do our karakia…’ So, he did our karakia. And of course I’m going ‘Can you put the bottles away, kei te pai.’ Everyone was ā wairua in both realms!! But the thing is it wasn’t a hākari (ceremonial feast) kind of night it was just trying to drown some sorrows, comprehend what was going on and all that kind of stuff. (Jackie-X, Sister)

Whānau fulfilled the tūroro’s wish to NOT observe spiritual tikanga if these traditional cultural practices or Christian rituals did not reflect their values or the way they lived. Being present before their death meant the tūroro could request the type of tikanga they wanted. This suggests that whānau are adapting tikanga to support their needs and contemporary ways of being Māori:

No well she [wife] didn’t want it either, she didn’t want any ah, ah, Māori hymns and that ah you know… she wanted English and so, and so she wasn’t really into her culture. (Ruski, Husband)

Manaia provided spiritual support for her mother. Her mother asked her to recite karakia and prayers before her assisted death. Manaia said this was not usual for their whānau. She felt karakia fitted the situation best:

Both when I was saying my final ‘goodbye’ to her I said, ‘would you like me to say a prayer for you?’ And she said ‘yeah, that would be nice.’ And so, I did. And then again when she was dying…. I pick and choose bits and pieces from different religions. But as I’ve learned more and more as I’ve gotten older about te ao Māori like that fits way better with my, feeling. That, that’s much more my belief and understanding. (Manaia, Daughter)

May reflected on the importance of waiata and karakia during the assisted dying procedure for the tūroro and for the whānau. When her partner had his assisted death, he asked to be adorned with taonga; he wore his mother’s korowai, and he held important taonga (pounamu) and placed around him were mere and kōhatu. May felt this helped uplift the mauri of Tama-D and also, their whānau.

Yes, so he, they came [kaumātua] and we had lots of singing, lots of praying, karakia… and he [Tama-D] wanted, he said to me ‘I want to have (because his mum was an amazing weaver and she [made] this beautiful korowai) … the korowai on when I pass… So, we had him outside. We had a marquee out there . . . And he was under there. We carried the bed out and he had the korowai… So, he had this that he held on to. . . [a] pounamu that… his mum had given him (May, Partner)

May discussed the involvement of a local kaumātua on the assisted dying day. Her partner requested the kaumātua take care of the tikanga on the assisted dying day including leading karakia and waiata.

It was about 2 days before he died, the date, he contacted [them]; he said to me ‘I’m going to call [kaumātua]… He was a kaumātua that lived next door to them growing up. (May, Partner)

Ruski recalled how his wife organised a hui with kaumātua before her assisted death to kōrero about her wishes for an assisted death and how this sat with their beliefs as marae kaumātua:

Oh she actually rang the, the kaumātua you know the ones for the pae and she, yeah and she spoke to them about it and they, they in their kōrero [to me] they said ‘yeah, yeah we agreed with everything she wanted,’ But you know, of course you can’t say ‘no’ to a dying person… but they, they actually just kept on their, their own kaupapa you know… That was fine as long as they said, ‘yes okay, okay cousin yes, we’ll do this, we’ll do that.’ (Ruski, Husband)

Kanga was asked by his cousin to attend the assisted death in his role as kai karakia (tohunga) or spiritual leader. Even though this was Kanga’s role he did not think it was tika (correct) to impart his tikanga onto the tūroro or whānau pani. He respected the tūroro’s wishes to have an assisted death and did not want to impose his tikanga onto the assisted death. Instead, he saw his was role to manaaki and awhi:

Well, it wasn’t my place then I thought, to exert any tikanga on my tuākana when he’s chosen which tikanga he wants to die with. And it was my place to respect his will. (Kanga, Kaumātua)

The assisted dying attending medical practitioner on the day of the assisted death became a rangatira (esteemed leader) in their own right; they prioritised their mahi and knowledge of the tūroro. Linda felt that the assisted dying attending medical practitioner supported the whānau with whanaungatanga and took on this tikanga of kaitiaki and manaaki:

Yeah, and see [name of AD doctor] … was there for Mum and you know I was always very quite clear with the whānau like [doctor] he kept us fully informed and stuff, but I knew his, his focus was his mahi with Mum. Mum was his patient.

… there’s a confidentiality aspect. I always said you know, ‘I’m going to leave this space, you come and get me when you need me.’ But obviously her [Mum’s] hearing altered that. But I reached out to him by text afterwards because I wanted to show him some awhi as well you know… To thank him and let him know we were okay and we hoped he was okay. . . And to acknowledge him as a rangatira in his mahi. . . and you know they quickly [we had] built a trust. (Linda, Daughter)

Manaia also reflected on the assisted dying procedure and the importance of the assisted dying attending medical practitioner’s āhua (character) and knowledge which supported their tikanga around death. This meant the assisted dying day although sad, was a beautiful experience for their whānau:

Really, if you’re going to die, then what better way to die? She [Mum] got to choose where she was. She got to choose who she was with. She had music playing. She had the most loving doctor and nurse. Um she was comfortable. She was looking out over her garden; it was the most beautiful blue-sky day like it couldn’t have gone better for want of a better word you know. It was, it was lovely. . .The way she died as an assisted death was actually, wonderful because it meant that she had a peaceful death. It couldn’t have been more peaceful. (Manaia, Daughter)

Linda discussed the transition of the wairua at end of life and the presence of tapu (spiritually restricted, protected) and noa (spiritually safe, unrestricted) before the assisted death:

I started to understand and learn around the concepts of tapu and noa. And understand that I could literally feel the transition into when I was in a sacred space of tapu, and when we were in that state of noa. And so, in the room with Mum [at the time Mum was preparing to have the assisted dying medication], and I thought about it, reflected on it a bit… it was that moment Mum said, ‘I’ll get on the bed aye?’ When she shifted onto that bed, in that room, we had entered our full state of tapu. (Linda, Daughter)

Linda explained ‘tapu’ and its connection to her ancestors and what she has experienced in death practices:

Ah, for me, tapu is when you’ve entered that, another realm, a realm beyond the every day. You’re in a special place where you are connecting to the realm of our Atua, to, to, to our tūpuna… so they were, they were there guiding… You know how I said the temperature changed you know like because this warm gentle hug was just around us in that space. Everything we needed provided was there, for her. (Linda, Daughter)

Hiri reflected on the last moments with their Pāpā, which were supported by waiata, stories and some waipiro (beer) and a special statement his father had for the whānau:

Pāpā’s last day. Ae, we all got into the lounge together ae, and he was in bed. . .We were singing waiata. We had short stories. My brother [name] ah finished off with a kōrero. And had a last cheers you know because he liked to drink a bit of waipiro! So, he just wanted a cup. . .Yeah, yeah, we had a little cheers you know, to send him on his way. He was trying to remember one statement to, to give to us you know, a lasting gift of, ‘I am the om and the om is with me, ae?’ Remember that?! Ah so, so he wanted to ah leave with that. (Hiri, Son)

Tania spoke about the discussion she had prior to her sister’s assisted death about what might happen after death – this helped to settle her sister’s spiritual distress. Rose expressed a fear of dying which is common for people approaching the end of life. Tania encouraged her sister Rose to revitalise her Christian faith as this helped her to prepare for dying. She also shared her own encouraging views of being cared for in death by tūpuna:

Because well, because there’s a real spiritual component about it because you know my sister, she didn’t just make this (snapping of fingers sound) because of her suffering. You know we had lots of conversations about it… ‘Will I go to heaven?’ You know. . . ‘Is this against God’s will? What if I go to hell because I’ve, I’ve chosen this? Where do I go? What’s going to happen to me?’

So, towards the last- her last day she really felt very connected to her faith…she wanted a picture of Jesus around. She felt that, as she was getting closer to [the] time she felt like she was- could feel Jesus’ presence… she felt a sense of comfort with that um. Still scared, the unknown you know, ‘what if I go into nothingness?’ And so, we had lots of conversations around that… so I shared matakite experiences that I’d had.

Like I told her, like one of the things I struggled about working at the [health institute] was I could see the gathering… I’d explain it… I say ‘Sis… I promise you absolutely with absolute [truth] and I’ve been around nursing and palliative long enough Sis, you’re absolutely not- you’ll not die alone and those you know and love, are there waiting for you’ and I says, ‘and I call it the gathering’. (Tania, Sister)

Wairua Spiritual Encounters

Some participants explained physical, emotional and spiritual changes they noticed in the tūroro at the end of life. They reflected on this as part of the natural transition from life to wairua (spirit). Linda reflected on what this looked like and felt like for her mother:

She was cool …in those last weeks she and thank God all the weight of all the crappy things that happened to her in life, lifted… so her Mum and Dad started coming to her in her sleep (and then not in her sleep). And I remember walking into her bedroom once and she was lying in her bed and she was smiling looking all around the room.

And I walked in and she looked at me like, ‘well now you’ve come and they’ve all gone’. And she said to me, ‘I spent a whole year being frightened of this and I just want you to know, that you don’t need to be frightened of a damn thing – it is beautiful. I know where I’m going. And I know who will be there. And it’s going to be great’. And I would say ‘yeah. And when it’s time Mum I’ll see, yeah.’ (Linda, Daughter)

Tania provided spiritual guidance to her sister before she died to help her reduce the burden of fear:

And I said [to sister Rose] ‘and sometimes it’s kind of like a, a sort of a glowing sort of golden sort of radiating light [I see].’ So, I say ‘so it’s like you’ve got all these people all just waiting on the other side of the veil; they’re all there.’ And I say, ‘and guess what Sis? They’re closer than you think, you know. And they’re there waiting.’

And I says… having crossed over a couple of times I said, ‘Sis, you are going to absolute love.’ I said, ‘what’s the thing you’ve loved the most – anything, name it, name it.’ She said, ‘oh well my daughter…’. I said, ‘imagine that love a thousand times… you go straight into that… and there isn’t judgements, there isn’t, there isn’t… hell.’ I said, ‘there isn’t all of that Sis… there’s absolute, love.’ …

So that’s, that’s why it was so hard because, to see her anguish at the last moment! Like I know the anguish is just part of the physicality of her mindset there, but I know once she crosses over, she goes into the bliss. (Tania, Sister

Māori see the world through shared cultural understandings and collective experiences associated with death, dying and mourning. Although end of life tikanga (customs) and death rituals can vary between iwi and whānau there are some fundamental and interconnected tikanga operating withing mourning practices. Some whānau involved in assisted dying found their mourning practices were somewhat different for an assisted death (because, assisted dying is new and different).

Linda described the mamae (emotional pain) on the day of the assisted dying procedure. It was different from grief she had previously experienced:

It was weird… it’s like when you wake up for a tangi you know, you got that feeling, that real mamae feeling. But it wasn’t. You know. Like it was, but it wasn’t. Like it was day one is I guess the easiest way [to say it]. That was day zero and day one and day end I don’t know. But so, we, me and her had a conversation in the morning, ‘Mum you understand today’s the day, do you still want to? Everyone’s coming’. (Linda, Daughter)

Whanaungatanga is important throughout all phases of the assisted dying process. Whanaungatanga in the Hina-te-Pō phase on the Kaitiakitanga Assisted Dying Pathway comforted the tūroro and the whānau during the assisted dying procedure.

Death is commonly accepted as a sacred and spiritual transition for Māori. When support workers (health professionals, funeral directors, chaplains) prioritised whanaungatanga the tūroro and whānau pani felt it eased the concern and discomfort around assisted dying. This was largely due to the āhua (character) and tikanga (customary beliefs and practices) of the support worker.

Tania discussed the relationship her sister Rose had formed with her hospice nurse during the Hinauri phase; this strong connection meant the nurse was invited to attend Rose’s assisted death. The nurse unexpectedly took on the role of kaitiaki for the tūroro as she was dying:

And then what she did was, because she [Sister] was so distressed by what, she was experiencing [unprepared whānau became upset during the assisted dying procedure] she locked eyes on [hospice nurse]; she couldn’t look at anyone else in the room – she locked eyes on the hospice nurse and the hospice nurse just winked at her and Rose smiled and sort of like you know [hospice nurse] so she’s like ‘you’ve got this’ and she’s [Rose is] like ‘yeah I’ve got this.’ (Tania, Sister)

Manaia said assisted dying attending medical practitioner supported the tūroro and whānau on the assisted dying day. Manaia reflected on how the prioritisation of whanaungatanga had lasting effects on the whānau and made the day feel relaxed and more peaceful about the assisted death:

We [me and sister] just sat outside [the house] and had a cup of tea and waited in the sun, it was beautiful day. I guess, maybe [mothers’ partner] was in with Mum or [brother] I don’t know but me and [sister] was sitting outside when the doctor and nurse arrived. And they hugged us hello which was something that really sticks with me, it was so lovely. You know, so it didn’t feel formal.

It was really lovely and then they just sat with us in the sun for probably 10 minutes and had a chat and ‘how are you guys and you know, do you have any questions? And how’s Mum doing today you know? And then they popped in to see her and just have a chat, and you know made sure she was still wanting to go ahead and all of that but they just- it was so relaxed, and they were just so lovely, so lovely. (Manaia, Daughter)

Tikanga Recommendations

Assisted Dying Assessment and Procedure

Whānau, we interviewed advised whānau on the Kaitiakitanga Assisted Dying Pathway to be kind to themselves and to take care of their own health. If they do not feel that being involved in an assisted death is something they can do, then they should step away from being involved:

What I would say to other whānau who might take up this space of supporting them is you have choices too. You know. Like you know, she wasn’t bound to this. But neither are they because if they start to view it as an obligation, or a requirement… to follow it through when they’re thinking it’s not the right space for them you can step out. (Linda, Daughter)

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:

Yes, and where did all of that fit? So that was a bit of a struggle [to find information on assisted dying]. Yeah that, that was a bit of a struggle because, we, we as a whānau, couldn’t get much information … it was like [it feels like] ‘you’re not important enough to be part of, decision making – this is an individual’s choice. And we’ll talk to him.’ [that was so clearly in that whole episode when [name of nephew] was, was nearing, nearing death.

The idea that [its] being individualistic and this, the patient is the person! And the whānau? Good to have the whānau around but we’re going to talk to the patient; they haven’t sort of graduated to the idea that we’re a collective body that makes decisions as a, whānau, as a hapū, whatever the case may be. Nowhere near that yet as, as, a service. (Mere, Aunty)