Kaitiakitanga Assisted Dying Pathway
Hine-te-Pō | Phase 2
Kaitiakitanga (guardianship) on the assisted dying day
Ka tō a Tama-nui-te-rā, ka rere a Hina
Every ending brings its own rising.
Hina-te-Pō – Phase 2
Hina-te-pō, the dark moon, follows the phase of Hinauri, the waxing moon. The familiar moonlight disappears, and whānau find themselves surrounded by uncertainty. Questions echo about choices, about tikanga, about the meaning of such an ending. Yet within this darkness, the seeds of understanding begin to stir. Though unseen, transformation is taking place. The absence of light is not the end; it is the space where renewal gathers strength.
Introduction
Whānau whakamana person’s wish for an assisted death
We draw on the lived experiences of whānau we interviewed in the Waerea study to share information about their experiences of the lead up to the assisted dying day and also, the assisted dying day. Whānau were important kai manaaki (care givers) and kaitiaki (guardians) during this phase of the assisted dying journey. At every stage, whānau told us that supporting someone who had an assisted death was very different from supporting someone who died from natural causes related to a terminal condition. Whanau kaitiaki wanted to honour and support their loved person to have an assisted death. Jackie-X (sister) commented it is important, “to whakamana their wishes” at the end of life:
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… so you know if he said he wanted a tangi in an aeroplane [we would have given it to him] (Jackie-X, sister)
Upholding the person’s mana motuhake (autonomy and independence) was most important for whānau. Tek’s sister was happy her brother chose an assisted death because he would no longer be in pain and suffering:
I was just happy he had the option. I’ve been a nurse and I’ve had a lot of friends whose- you know, [I’ve] been with other people [who] have been dying, helping friend’s parents and that. And if he had the option not to suffer, to not prolong his pain or- and to be able to make his choice, then I was happy that he had that choice. (Sister of Tek)
Benefits of having an assisted death
A peaceful and ngāware (gentle) death
Whānau reflected on how peaceful the ill person’s assisted death was. They appreciated the person was no longer suffering or in pain. Hiri said, “it was good to see him [Pop] not suffering anymore, that was the main thing”. The person who had the assisted death was able to uphold their mana motuhake (autonomy and independence) and their whānau were happy they helped them achieve their wish. They also valued the Attending Medical Practitioners and Attending Nurse Practitioners who supported the whānau on the day of the procedure. Manaia commented:
[R]eally 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. 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. (Manaia, daughter).
Tama-D invited a local kaumātua to attend his assisted death; the kaumātua brought along others to support the assisted dying kaupapa. Tama-D chose to die outside his rural kainga (home) in a marque. His partner May and his closest whānau were present. May recalled:
[T]hey came [kaumātua] and we had lots of singing, lots of praying, karakia… and [Tama-D] wanted, he said to me… (because his mum was an amazing weaver) and she [made] this beautiful korowai) so, he said ‘I want the korowai on when I pass… he wanted it on as he was dying… and he wanted to be outside!
So, we had him outside. We had a marquee out there. And he was under there [outside]. We carried the bed out and he had the korowai [on]… and he held on to his stone mere… [and pounamu]his mum had given him… And one of the guys that came with the kaumātua, his son had found this [small glass kōhatu – stone] on the beach in the morning and gave it to Tama-D. And Tama-D wanted that and he held on to that. He said to me when they gave it to him, he said, ‘make sure that’s in my hand.’
Another participant shared:
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. (Waerea study participant)
Kanga found the assisted dying experience a “good tikanga” because it was empowering and dignified:
I consider myself somewhat versed in a wide range of Māori things. And as I said to my extended whānau that this [assisted dying] 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, to want of another word, I really enjoyed [cousin’s name] passing which sounds really, really, kino [bad] but, it was so ngāwari, (gentle) 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)
On the dying day the person may have been unwell and therefore, at times confused. Whānau were there to manaaki (care for) them:
But then, when the girls were helping her [Nan] get dressed to do her hair and stuff, [eldest daughter] came out. She said ‘Mum, Nan’s confused, she thinks she’s just going to a doctor’s appointment – she’s talking about ‘afterwards’. And I was like, ‘no, no, don’t worry she’s fallen in this trap before [wareware – forgetful] …” (Linda, daughter)
Many whānau told us that their loved person had a peaceful assisted death. Manaia was grateful her mother had a peaceful death:
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)
Planning and organising the dying day
Whānau supported the person with a terminal illness to prepare for their assisted death. As kaitiaki (guardians) whānau often helped the person plan and organise their dying day. This included arranging hui (meetings) with whānau, kaumātua and funeral directors. Whānau kaitiaki supported the person to carry out their death tikanga (cultural customs), while making sure everything was in place in the environment and everyone was present who needed to be there. During this time whānau were careful about who was told about the dying date and the timing of the assisted death to protect their loved one from any disruptions on the day.
Knowing in advance when someone is going to die gives the person and their whānau time to think about, plan and discuss the terminally ill person’s death wishes and what they want to happen; one whānau supported the person to complete an Advanced Care Planning document. A participant commented that assisted dying should be considered normal conversation that takes place at the end of a person’s life:
Just that talking about your death before it occurs is really important that your family and your closest friends know your own preferences. And that talking about things like, how you feel about saying assisted dying, should be part of that conversation. because if it needs to come up, it’s not going to come as a shock to people, when you’ve already had that conversation and they know your feelings. (Huia, daughter)
Being able to say ‘goodbye’
Whānau told us that there were a lot of benefits to having an assisted death. Knowing in advance the day someone was going to die made it possible for people to say ‘goodbye’ properly. They were able to plan and organise what would happen on the day of the assisted dying procedure. Having control over how they wanted to spend their last hours or moments was comforting for people who had a terminal illness.
“I’ve now seen it [assisted death] Um, I know how peaceful it can be. And you’ve got that time to say ‘goodbye’ to your loved ones. (Janice, friend)
Sometimes saying ‘goodbye’ meant having a last outing or a treat; Linda recalled how her mother’s mokopuna cared for her before she had the procedure:
The kids took her to town, and she had her last little shopping trip in town and brought them lollies, and it was like they were all 5 years old again. (Linda, daughter)
Linda’s mother’s mokopuna chose to have quality time with their grandmother after they were told she was scheduled to have her assisted death:
Yeah, I actually sat in [Mum’s] car with them [nieces]… and we sat in her driveway, and I told them and then they said, ‘Can we go and be with her?’ And they stayed with her all night until she fell asleep, then they stayed up all night. Then they blocked their mother’s car in so she couldn’t go to work and they told their mother. (Linda, daughter)
Just before the procedure Ruski’s wife used the time she had with her whānau to give them some last-minute advice. Ruski recalled:
And she also told me not to ‘mourn too long’ because I, I’ll be 80 soon. She went ‘you’ll be 80 soon…, don’t waste your life, the rest of your life’.
Ruski said his wife had an “audience” with her whānau before she departed – it was a humorous occasion and whānau were laughing:
… 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… like her aunty. She was in love with a [religious leader] so ah, Mere just said to her, ‘Aunty forget it… forget about that you… pick on somebody else…’ and everybody’s laughing. (Ruski, husband)
Ruski’s wife had the opportunity to give away koha (gifts) before she died. This lifted the burden off her husband to dispose of her clothing and other items:
[E]verything went smooth as… everyone who came around she gave each person… some of her clothing and things like that. … there was one, one particular one that this person couldn’t come, so she got me to [gift it]; it was a handbag, a tāniko handbag type of thing and she said ‘this has got to go to so and so… I want you to drive out there and give it to her’. Yeah, because that person wasn’t well either so, yeah… and that meant I didn’t have to deal with all her clothes and all that thing. By the time she went her wardrobe was empty you know, and she just kept the clothes that she wanted to be… cremated in. (Ruski, husband)
Knowing when someone was going to die meant whanau could plan rituals to say ‘goodbye.’ The day before Manaia’s mother died the family organised photographs to be taken with her mother and her mokopuna (grandchildren).
Saying goodbye was also an opportunity for whānau to say karakia and sing waiata if that was wanted:
… 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… Yeah, 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)
Because people who were having the assisted death knew exactly the day and time of the procedure, they could tell those people they wanted to be there on the day:
She’d said ‘goodbye’ to everybody. We already knew she wanted to die. She told us in ED when she was admitted [with a stroke], ‘I don’t want to live with it, like a vegetable’. And so, Mum and [mother’s partner] had had that discussion … but she’d had a full life now. She didn’t want to fight for a life of less, less than. She chose everything and we just supported. And a lot of people said how ‘lucky’ we were, that all of us were on the same page because often there’s whānau who have one person who’s not and then they have to deal with that um. (Manaia, daughter)
Choosing where to die
Most people chose to die at home although one person chose to die in a tent on his back lawn and another chose to die in a local rural hospital; she was given permission to use the room the hospital kept tūpāpaku (bodies) in while waiting to be collected by an undertaker:
Ah, so she chose, at that very first appointment, that she would like to die in the hospital because it was not her flat. And so, she didn’t want to pass in a, a whare that was going to belong to somebody else. She didn’t think that was fair to that next person. (Linda, daughter)
Planning and preparing for tangihanga
When someone was approved to have an assisted death, they chose the day their wairua would leave and their tinana (body) would physically die. Knowing this provided them (with support from whānau) an opportunity to plan for their tūpāpaku (body) after they died.
People with a terminal illness embraced the opportunity to look after their whānau by planning and organising their tangihanga. Meeting with funeral directors, choosing caskets and arranging the burial or cremation in advance was possible. The person also confirmed what marae they would go to for their tangihanga (funeral) and the urupā they wanted to be buried in. Whānau appreciated the person contributing to the pre-organisation of their tangihanga. This helped to soften their grief. Linda commented, “Because Mum [was] organising all of that for us, that helped the grief process”.
Manaia’s whānau felt that knowing when the assisted death was going to take place meant they could arrange their mother’s funeral. They felt very prepared for her dying day; the process gave them more time to experience their grief on the day instead of being busy and distracted:
I think because we felt quite prepared around it, that probably helped. We felt like we could be quite organised. We’d organised photos for her funeral already the week before because we, we knew that it would be, it was going to be a big job and it was, it took hours – the whole afternoon. So, we wanted the weekend that Mum died and then the few days before her funeral to be, just not so stressful with having lots of jobs to do. So, we felt quite organised and, but it gave us time to be a bit more sad perhaps than busy. (Manaia, daughter)
Jackie-X also felt that knowing when her brother was going to die helped her whānau organise her brother’s tangihanga in advance. Her brother Whare Taonga helped their terminally ill brother organise his financial matters to fund his tangihanga. The whānau had time to organise the marae, kai and to notify their whānau to fly home from Australia:
And, and [my brother] was there to do all the finances because they had released his Kiwi Saver so then they could pay for the [tangihanga]. (Jackie-X, Sister)
It was helpful to involve funeral directors early in the process. Ruski recalled his wife’s mana motuhake (autonomy, independence) in planning her own tangihanga and purchasing a burial plot for her ashes:
Right ‘til the end… even on the day it- the euthanasia was performed she had an audience… Oh, she organised her tangi, she organised. She had the- you know everything. The, the undertakers. They came around and measured her up. She wanted you know ah [chose] a, a plain coffin. She was clear in what she wanted.
… she’d already organised with the, the oh ah, the chef at the marae what, what was, what types of meals she, she wanted and everything. I tell you; she invited the chef around [to] the house – I don’t know 3 or 4 days before it happened. And she said she wanted ‘butter not margarine’ and all [sorts of] stuff. She wanted fizzy drinks for the kids because they don’t serve fizzy drinks down [name of] marae normally, but they had it there that, that day.
And she even organised that… she went and purchased the ah, a plot you know at, at the, at the ah urupā. Not a, not a burial plot but for ashes, they’ve got separate areas for that… and she’s even got one for me. (Ruski, husband)
George commented that having an assisted death provided her with an opportunity to consider new death tikanga. She planned to have her whānau prepare her body in a traditional way. Normally, this takes place following death (wrapping her tūpāpaku in a kahu whakatere tūpāpaku, or indigenous flax shroud) however, she wanted this done before her assisted death. She liked the idea of being prepared and settled in this way prior to the procedure taking place. This would also reduce the after-death care required of her whānau:
Absolutely I’m laying there, ready… Then my body wasn’t going to be pummelled about (after I die); I could lay in the position that I most felt comfortable… Yes, so that was something that we thought about that I felt was really um, different. And it’s not about being different it’s about making a lot of these things um- normalising them. I think that’s what I, I’m in the business of is normalising [assisted dying]. (George, person who wanted an assisted death)
Gathering together as a whānau for the assisted death was supportive
Whānau and friends could successfully plan to be present at the assisted death because they knew when someone was going to die. Mr Zion’s whānau had one week’s notice to travel home from overseas to be with him; his immediate whānau gathered inside his small whare while many more people gathered outside. Whānau joined hands and stood around his house as Mr Zion had the assisted dying procedure. Mr Zion’s sister-in-law Leah commented on how strange dying in this way was. Being together as a whānau was supportive. She said the whānau were, “Just holding each other because it was just too much”.
Sometimes there were only a few whānau present at the assisted death and other whānau, like Mr Zion’s, had many people attend:
(Nan’s) only thing was that it was just us four grandchildren, my mum and, um, her sister…, and that was it. That was all that was to be there… (Ella, mokopuna)
The person felt in control on the assisted dying day
Oh, the house was full… oh there’s you know, even standing outside, all the whānau were there. There was about probably about 30. Thirty people yeah. (Jackie-X, Sister)
Many whānau told us the person who was having the assisted death was able to organise in advance how they wanted to spend their final hours. They often had control over who they wanted to be present, where they wanted to die, what music they wanted played and what tikanga (customs) they wanted observed. Ruski commented that as the assisted dying attending medical practitioner prepared to give his wife the medication, she rejected religious formalities; he said, “She went out singing” to her favourite pop song, not a religious waiata:
[W]e had a brother-in-law, ah a layman in the [name] 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 ah, we had all her music on, all that she wanted done. And so, she went out singing [to name of song from the 60s].
And then you know, because the second ah injection that made, made her go unconscious, so she stopped singing then of course. But yeah, right from the, the first one (oral medication) that was like a relaxant. And that really relaxed her and she was singing away. (Ruski, husband)
Whānau manaaki (support) on the assisted dying day
Whānau played an important role in helping the person fulfil their wish to achieve their mana motuhake by having the assisted death. Whānau released people (gave them their blessing) to hasten their death. Mokopuna Ella recalled:
[W]hen my nan was making her decision at the hospital [on the day of her procedure] whether to go through with it… [the] grandchildren walked in the room and she saw us and wanted to change [the time] a little and she said, ‘Oh I’ll just do it – just give me a few more hours and I’ll do it later today’. And I said to her- just looked at her and I said, ‘It’s okay Nan’. Like, ‘You can go’, and she was instantly [‘okay’]. Like she was just holding on for us [mokopuna]… I think she just saw us and thought, ‘Oh I can hang on for a little bit longer for them’ but- (Ella, mokopuna)
The assisted death brought relief to whānau
Whānau experienced gratitude and pride in their loved person for fulfilling their mana motuhake to have an assisted death; they were relieved the person had a peaceful death and was no longer in pain and suffering. Huia’s mother had had a stroke and struggled for many weeks before she died. Huia said:
Dying was not the worst part of it; it was living with an incurable illness and suffering and going up and down when there was no hope. The fact that she’s died is like the devastating outcome of it, but it’s sort of not the worst part of it. The worst part of it is that those last months were what they were. The worst part of it isn’t that that day came around – that wasn’t the worst part of it. (Huia, daughter)
Manaia felt comforted by the support they received just before the assisted death from the assisted dying attending medical practitioner and nurse practitioner:
She had the most loving doctor and nurse… We just sat outside and had a cup of tea and waited in the sun, it was beautiful day. Um I guess, maybe [mothers’ partner] was in with Mum or [brother]… 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 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 make sure she was still wanting to go ahead and all of that… it was so relaxed, and they were just so lovely, so lovely. And then they came back out, and they were like, ‘she does want to go ahead you know, she has decided and so we’ll go and get everything set up if you’re happy with that?’ So, we were like, “yeah go on and do that’.
Wairuatanga (spirituality) helped whānau cope
Whānau also experienced fear and confusion leading up to the assisted death and some people felt a deep sense of guilt and regret after the assisted dying procedure. Whānau mentioned different things that helped them cope during the assisted death and afterwards; this included drawing on spiritual beliefs and customs. Tohu (spiritual signs) gave whānau a sense of meaning in a time of great sadness Ella and her whānau found specific tohu calming and healing at a time they were experiencing heightened grief and anxiety:
… when we went to [the room Nan died in at the hospital] there was a pigeon sitting right at the window before we went into the room. And then, when I went back out to my dad to say, ‘Nan had passed away’, then there was two pigeons… because my nan lost her son… [and] they flew away – we all saw them both fly away. So, I felt alright… My uncle had come to get her…. Yeah, and it was real significant, like first it was one [pigeon], then it was two… to fly away. (Ella, mokopuna)
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