Kaitiakitanga Assisted Dying Pathway

Hinauri | Phase 1

Hinauri – Phase 1. Introduction

Whānau Kaitiakitanga - Family Guardianship

Three phases were identified on the Kaitiakitanga Assisted Dying Pathway. Each phase refers to a specific passage of time. This section provides information about Hinauri, the first phase on the Kaitiakitanga Assisted Dying Pathway. This phase refers to the passage of time following a terminal diagnosis when someone considers assisted dying and before the assisted dying day and procedure.

Whānau are kaitiaki (guardians) who provide care, protection, advocacy and support before, during and following assisted death. Included here is information based on Māori peoples’ experiences. We interviewed people in the Waerea study who wanted an assisted death as well as bereaved whānau who supported someone who met the assisted dying criteria.

The findings reveal the independent nature of people who chose to have an assisted death and the reasons they want/ed an assisted death. We also share how whānau accessed information about assisted dying, how they discussed assisted dying with their whānau. They also supported the person’s end of life planning and preparation including assisted dying and tangihanga (funeral customs).

Mana Motuhake - Ahua (character) of person who chose an assisted death

After hearing they had a terminal illness Māori adults wanted to exercise their mana motuhake (autonomy and independence) over the end of their life, and this included how they would die. They drew from their own mana (status/prestige) strengthened by their whakapapa (genealogy), to travel this pathway. Whānau described family members who chose an assisted death as “tough, stoic, independent, staunch, proud, strong, resilient and brave.” Mere recalled her nephew’s choice to have an assisted death:

I actually thought he was being really brave when he told me that he was going to go through with, with this. (Mere, aunty)

Linda discussed how her mother used her mana motuhake to seek information about assisted dying from a doctor; she thought deeply about who she wanted to tell about her decision:

So, it’s about, it’s about, it’s almost a three-hour bus [ride for Mum to see the assisted dying medical practitioner]; yeah, it’s a little van and it goes to the hospital every day from [name of rural town]. And so, she sat in that bus for three hours on the way home… and she just thought ‘do I tell them [whānau] or not? (Linda, daughter)

People who chose to have an assisted death were often very private and also very independent – they were described as “movers and shakers,” and they liked to be in control of their lives. They invited whānau to walk alongside them:

But we were only here [clinical environment] a couple of days ago trying to talk about it [assisted dying] and she’d [wife] already rung them [Assisted Dying Services]. Got the ball rolling without us even knowing. (Steven, husband)

Using the End of Life Choice Act (2019)

Individuals who had a terminal illness and who thought about having an assisted death exercised their own mana motuhake (autonomy, independence) to enquire about, and choose, an assisted death. Most people recalled voting for the End of Life Choice Act (2019) or they had read about the Act in the paper or seen it on the television.

People who had a terminal diagnosis often spoke to a health professional about their wish to have an assisted death before they spoke with their whānau. Firm decisions were only made when they felt they had sufficient information about the assisted dying criteria and process to make an informed decision. Whānau were often involved in this information gathering process.

In the first instance, the person who wanted an assisted death often shared the information with only one or two trusted whānau members. These people often became assisted dying kaitiaki. After the person with a terminal illness had more information on board or when they started their assisted dying assessment process the news was then shared more broadly with others in the whānau. Whānau kaitiaki were in a unique position because they attended the assessments and they understood the process. They often helped to share this information with other whānau members.

It was not always easy for whānau to learn that someone they loved had chosen a specific kaitiaki to help them organise the assisted death. Ella, who was her grandmother’s caregiver, recalled how upset she felt about her mother’s involvement in her grandmother’s decision to have an assisted death:

After going through it, it’s real different. Like at the start when Mum told me she was talking to the [assisted dying] doctor I got really mad because like, I had looked after Nan and then Mum just randomly came and then, quite fast [was] talking to the doctor after coming [here].

And I was like, ‘Oh hang on a minute. Like, I’ve been doing this for like six months and then you want to come here and tell me ‘it’s end game’. And that was annoying to me because I thought, ‘Oh yeah, Mum’s just walked in and thinks, ‘Nan can’t cope,’ even though Nan [is] actually is coping, I know my nan is coping… I didn’t think Mum had put the decision on her but like, she’s starting [the process]. (Ella, mokopuna)

Whare Taonga had the responsibility to support his brother (Mr Zion) to tell their whānau about his decision to have an assisted death. Whare Taonga’s goal was to keep Mr Zion safe first and foremost and then to ensure the entire whānau was safe. He had to prepare Mr Zion for the whānau hui (meeting):

[I told my brother], ‘You’ve made your decision and now we just have to process from here to there and how we’re… going to bring our family along on this, on this journey. And there may be some causalities but at the end of the day we have to focus; [it’s] about you. And turn their focus on to you. And I’ll deal with that.’ So, it was my job from there to talk to his tamariki [children] and bring them together around the decision… prior to that we had then decided we’d do… it in 7 days’ time from that last [assisted dying] appointment… I had 7 days to [tell everyone]. Well, I did it in two days with his kids, to bring them together.

As Mr Zion’s kaitiaki Whare Taonga set up a whānau hui (meeting); through his facilitation he enabled his whānau to understand what assisted dying was. This meant allowing his whānau to express their grief and to answer any questions they had while explaining the assisted dying process and the terminology:

… no one knew [about assisted dying] so what were they going to expect? And then you know… questions you know, they were like you know, ‘What are euthanasia?,’ and all of this… and the terminology… [I said] ‘It’s an end-of-life option… it’s a human being that’s decided to [have it] because of these reasons…[Mr Zion is in pain all the time].’ So, just kind of wrapping around some of the wording that was being used and understanding. (Whare Taonga, brother)

Decision making could involve many whānau members and hui (meetings) and korerorero (discussion) could take place over many days in different settings with different people:

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)

“Put yourself in their shoes”

Leah said the role of their whānau was, “honouring [my brother-in-law’s] life talking about assisted dying.” However, that does not mean it was always easy for whānau to support a whanaunga (relative’s) decision to have an assisted death. Individual whānau members could often have mixed feelings or experience confusion about assisted dying. It was normal for whānau to feel uncomfortable. However, despite their ambivalence (mixed feelings) whānau placed the person having an assisted death at the centre of their care and they did everything they could to support them and meet their needs.

Although assisted dying may not be what some people wished for the person they loved, they came to understand the level of pain and suffering they were in and this helped them accept their decision. Their compassion meant they were able to put the person’s wishes first:

Well, we will support Mum in what she wants to do. We’d choose the other option [natural death] but really what it’s really about [is] what Mum wants to do, it’s not our journey… Yeah, we’re here to tautoko [support] so, yeah we’d rather her just live out the days but I know personally what it’s like for her to be here at the night times and all that kind of things so you know, when it’s really tough. You can understand why you just wouldn’t want to live that way so. (Nga, daughter)

Tek’s daughter reflected:

[I]t 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… have always supported him and supported his choice. (Tek’s daughter)

Daughter Maddie commented that it is helpful to imagine being in the other person’s shoes as this helps whānau understand what the person with a terminal illness is going through and why they want an assisted death:

Be open minded and not to be so tunnel visioned. And because at the end of the day it’s not them doing it so they need to realise, and understand, the other person’s point of view. Put themselves in their shoes and see where they’re coming from because at the end of the day they always, like, ‘You’re always thinking about yourself.’ And whenever someone comes to you with something you just assume, ‘Oh nah, I don’t want to do that. But that’s because you’re not putting yourself in their shoes’. (Maddie, daughter)

Tania also commented that is helpful to remember that it is up to the person with terminal illness to choose an assisted death – that is their right:

That person’s voice is the only voice that should matter. That person’s and no one else’s voice. I don’t care who it is, it’s their journey, their final breath – them. Anyone in non-agreement, keep them the fuck out of it and far away as possible from it… it’s all about them.

Go, go to another room sort yourself out. You know what? Have these conversations when they’ve been and gone. Get your grief out of the way get your- because you know what? Their soul, their choice, their life, their body, their exit. I’m, I’m absolutely pro that. I’m very, in fact I’d be a massive advocate… (Tania, sister)

The Waerea study findings identified five main reasons Māori adults wanted to have an assisted death following the news of a terminal diagnosis.

Assisted dying:

  1. Fulfilled the person’s wish for a dignified death
  2. Helped the person maintain or preserve their mana
  3. Reduced the person’s fear of anticipated pain and suffering
  4. Helped the person take back control
  5. Helped the person feel less of a burden.

Assisted dying fulfilled the person’s wish for a dignified death

The reasons people chose to have an assisted death are clarified here in more depth. Whānau said their whanaunga (relative) had the opportunity to have a dignified death because they chose an assisted death. Whānau supported their mana motuhake:

My cousin] was an extraordinary man…when I look back, he was a servant [and] leader of the highest calibre. 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. He lived a dignified life, and he died a dignified death. And as I said to my extended whānau that, ‘This experience is something absolutely new to me’… [F]or want of another word I thought it [was] a good tikanga. Very empowering for the individual. And very, dignified…

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 [older male] 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. (Kanga, cousin)

Kate made her decision to have an assisted death based on her experiences of observing others in the whānau who died suffering; she felt they had undignified deaths:

…It [my decision to have an assisted death] has a lot to do with my thinking and watching others and the pain and then the chaos it caused for the family afterwards. And then in my own experience, it’s like death is inevitable but when you have cancer it’s like it’s in your face, you have to think about it. Even if you don’t want to, even if you’re uncomfortable. You really have to think what am I going to do? And what do I want to endure? And what time do I have left to do what I want? And dying is a part of that yeah. (Kate, person who wants an assisted death)

Assisted dying helped the person maintain or preserve their mana

One reason people sought an assisted death was to maintain their mana (status, prestige). Whānau who had a life limiting illness told us that underlying the reason they wanted to have an assisted death was the preservation of their mana (holding on to mana) at end of life. Tek wanted to uphold his mana and his sister said she supported him to achieve his goal:

Tek: [I want to have an assisted death] to preserve my mana and to try and cause as little harm ah, to my whānau as I can… My understanding of [my specific serious illness] is that it can be quite painful and quite traumatic, um and quite drawn out. So, I could have spent a lot time lying in hospital bed ah either at home or somewhere else with the kids wondering ah, when I was going to die? And eventually probably getting to the stage, a stage in their minds where they wanted me to. Not because they were cruel and don’t care because they’re not. But just so that I can be released from that suffering.

Sister: I was just happy he had the option. I’ve been a nurse, and I’ve had a lot of friends… you know been with other people who have been dying, helping friend’s parents and that. And if he had the option not to suffer, to, um, not prolong his pain or, and to be able to make his choice, then um, I was happy that he had that choice. (Tek, person who wanted an assisted death and his sister]

Whare Taonga’s brother’s health was declining and he was in pain. His mana was being diminished because his physical appearance was changing rapidly:

[Brother said] I’m going to enquire about it. And um, I’m going to see what’s the process to and I said okay then I’ll be with you as well. And the process from that process, he was battling to get more pain killers, he was battling and with his nurse and everyone to get more pain killers and everything and it was, was really hurting him. And he was also deteriorating, physically deteriorating and his mokopuna were getting scared looking at him because of his ah [dis]figuration, because of his face and everything. And that hit his heart because his mokopuna was his heart. (Whare Taonga, brother)

Linda helped her mother navigate the assisted dying pathway because she wanted to uphold her mana at the end of life:

[S]o once she [Mum] opened the door [to having an assisted death] then just for myself I started looking… because I knew she wasn’t going to be able to facilitate all of this. She didn’t even know how to use a cell phone…… She said she couldn’t speak for all Māori but for her she just knew this was going to be something she wanted. She didn’t want to have to resort to other ways of doing it [taking her own life]. She didn’t, yeah. She knew that she wanted to uphold her mana. (Linda, daughter)

Whare Taonga reflected on his brother’s decision-making process. His brother Mr Zion trusted him and was able to ask him his thoughts about assisted dying. Mr Zion had thought deeply about using the EoLC Act (2019) to preserve his mana at end of life and to care for himself and his whānau. Whare Taonga was humbled by his brother’s process:

And then we were just talking and he [brother] said, ‘Oh bro, do you know about End of Life [choice Act?] And I say, ‘Yeah, absolutely. Yeah, actually I’ve read a lot about it last year….’ [Brother asked me], ‘Yeah, um what do you think about it?’ He goes ‘Oh, I’m wondering if you knew.’ And I said ‘yeah.’ And I think that sat with him, for him to think hard about it. And then we got back together again, and he goes ‘I’m going to enquire about it and um, I’m going to see what’s the process too.’ And I said ‘Okay, then I’ll be with you as well.’

And ah my brother’s kōrero was very succinct, very true to everything that he said. And he had mana. And um, I was so proud of my brother, the way he spoke. Because he took charge of his life… (shared with wider whānau later)… There were a lot of tears but I, I think it’s the way… we spoke about it and [whānau] had that understanding of, ah why, why he’s made this decision. And it was about ‘You fellas and then about him; but it was about ‘you fellas mostly and it’s about your tamariki mostly.’ And ah dignity and mana. (Whare Taonga, brother)

Te Iringa provided a good description of why her mother wanted to have an assisted death (sadly, this was at the early stage of the Act’s implementation and the referral to be assessed took long and her coherence diminished during this time – she was declined her wish). Te Iringa said her mother’s wish to maintain her mana at the end of life meant she wanted to have mental capacity and die peacefully:

And, she had heard about- she followed that, that [EoLC Act] legislation. She followed that right up until, November when it was passed in parliament. And she knew at that point, ‘okay, we’re going to do this.’ But she knew prior to that, that that’s what she wanted. She wanted [it] just so that her kids and her mokos [grandchildren] would not see her [diminished]. Would still see her as that strong wāhine… that we’ve all seen her as, throughout our upbringing, and the mokos upbringing. She, she wanted us to see her and leave us in that form.

So, when my mum first indicated to me about her thoughts around that, she said ‘I, I want to do that, I want to do that.’ And I said what, ‘What do you mean, you want to do that?’ She said, ‘I want to go peacefully like that. And I want me to have all my marbles, when, when it does- when it’s, when the time comes. Have all my marbles and my wits about me. So that I can peacefully go with a smile.’ (Te Iringa, daughter)

Assisted dying reduced the person’s fear of anticipated pain and suffering

One of the main reasons people wanted an assisted death was to end their pain and suffering. George said she wanted an assisted death, “Simply because I don’t believe, and I still don’t believe, that we have to live, in pain.” Kate commented on her decision to have an assisted death, “It would be being able to be pain free um because with [type of] cancer, it’s quite painful.” An assisted death puts an end to pain and suffering. Turama commented on her sister’s wish to have an assisted death:

But that she, she just wants to go on her own time that you know um. She doesn’t want to be in the pain, and she doesn’t want to you know, be disabled or unable to walk. (Turama, sister)

The driving force behind Dobby’s exploration into assisted dying on behalf of her sister, was to reduce her suffering at the end of her life:

My motivation to investigate this [assisted dying] was to, to minimise or even eradicate or remove any pain that [sister’s name] would need would suffer unnecessarily, that’s what my motivation was. (Dobby, sister)

Mere’s nephew also wanted to prevent pain and suffering, “So, he’d looked it up and he’d made a decision that, he didn’t want to suffer the way other whānau members had suffered in a similar, with a similar condition.” (Mere, aunty)

Jackie X said it was her brother’s choice to have an assisted death because he was in pain:

It was his [choice]] solely. He wasn’t influenced by his wife; he wasn’t influenced by the kids… And he [brother] goes ‘Oh, I’ll tell you why [I chose assisted dying], ‘I’m in pain myself. I’m in pain looking at every one of you looking at me’… Exactly that [we wanted] to whakamana [uphold] their wishes. Personally… if it eases, the suffering I have no problems with it at all. I think that me and [sisters name] as well and, [brothers name] is a bit of a closed book about, thing, emotions.

… but we’re really grateful to be in a place where we had the choice… and that we would have a choice if it was us. And I think the overpowering part was that it was [for] the love of our brother. This is what he chose, and we love each other. (Jackie X, sister and Leah, sister-in-law).

Janice said her friend was also in pain and this influenced her decision to have an assisted death:

She was a [health professional]. And she yeah, she ended up with cancer and was in pain a lot of pain … and she applied for assisted death to help her to carry on her journey yeah, and so she wanted to end her life. And that’s the way she chose. Everything was lined up. She knew what she wanted, she knew what she was doing; she was clear on that right to the bitter end. (Janice, friend)

Ruski recalled his wife’s decision to have an assisted death was influenced by the knowledge that her condition would become worse:

You know each one will have their own thing but, it’s basically it’s the person who, who’s dying needs to make all the decisions you know. I don’t think, I don’t think we’ve the right to do, make any of this, those sort of decisions for her. I didn’t want to be, seen as forcing her to do it or anything like that. I just said, ‘well okay babe, that’s what you want, that’s what you, that’s what you can, you can have [that].’ Well, the, the, the news that you know, it was, the pain was only going to get worse and worse. (Ruski, husband)

Janice who supported her friend who was in a lot of pain before she died agreed with her friend’s decision to have an assisted death:

I’ve now seen it [assisted death] Um, I know how peaceful it can be. Um and you’ve got that time to say goodbye to your loved ones. But I also get the side that she was in pain I get that. Because it was inevitable, the inevitable was going to happen. But why, why turn around and live the rest of your days like that in pain? Couldn’t move, she couldn’t get out of bed, she couldn’t move and she, there was one thing she really, really wanted us all to say is to share it. To share her experience. (Janice, friend)

Assisted dying helped the person take back control

Many people who wanted an assisted death had seen, or cared for others in the whānau, who had a terminal illness. They saw them suffering and in pain. When they received a terminal diagnosis, they anticipated the pain they would suffer and they believed they would have an undignified death, like their relative. They wanted to die before their mana became too diminished. Sometimes this meant dying before they were unable to walk or talk or their physical appearance changed too much. They wanted control over the timing of their death. Kate, who had a terminal diagnosis said:

I’ve recently been diagnosed with [name of] cancer. So that brought about questions of quality of life and how did I want to live my life. Um, I’ve had experience with palliative care with both my grandmothers and my mum who I saw pass away ah quite shockingly and painfully. One of my grandmothers like died slowly over 3 months; she ended up with bedsores… I knew that she would have wanted to have chosen this (this is before the end-of-life assisted dying laws came about). (Kate, person who wants an assisted death)

Assisted dying provides people with the option to take control of when they die, and how they die. Whānau wanted a peaceful, painless death for their terminally ill family member and they wanted their grieving whānau to be cared for in the process. When everything else is failing them, choosing to have an assisted death is one thing they can control. Steven said his wife was proactive in asking health professionals about assisted dying:

I think she asked ah, ah hospice nurses I think when they’d come over first. Oh, she’s asked about every medical person that’s come over. (Steven, husband)

Olive commented assisted dying gave her husband’s grandfather a sense of control:

It wasn’t like the gravity of it like for him [father-in-law] 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. (Olive, granddaughter)

Suffering can be prolonged causing anguish to the person with a terminal illness and also their whānau who observe them suffering. Having a sense of control over suffering was important:

Well, the thing is that she [Mum] wanted to die by then. So, every time she was told she- we were told she was going to die, we were like really sad but also like, ‘Okay, good.’ That’s weird, but you know not good, but she, she knew.

We were told, when she was admitted to ED, we were told right then and then ‘she’s not going to survive this, this is not survivable.’ So that was half an hour into her being brought into ED. So, we went through that initial shock process of you know, what the!

And then, we reconciled that I suppose. And so, because she had no movement basically, she had nothing on her left side at all. And then even her right side because she was in hospital so long started to atrophy so she’d slide down her bed and end up- like one time [name of sister] walked in and she was jammed against her rail. And just, stuck… and it was hot, it was summer; she couldn’t get a drink.

We’d turn up and she’d be like ‘can I have a drink?’ She couldn’t find her call button because the nurses never put it anywhere for her to actually reach it. (Manaia, daughter)

Huia reflected on her mother’s constant suffering leading her to take control of how she would die:

She [Mum] as we left the hospital in the evening, she’d quite often say along the lines of, ‘I’ll say goodbye now because I probably won’t be here tomorrow.’ And we’d look at her go and ‘I think you will Mum, because you, you’re not going to die tonight. Your eyes are bright you know, your skin’s [nice]’…she was fading away but not very quickly.

So that was kind of devastating for her because every day she’d talk about, she was ‘ready to go now.’ Once it, once it was um, something that could happen [assisted dying], that’s what she wanted. Once, the idea was there that was- it could be a possibility and she’d be allowed, that’s what she wanted. (Huia, daughter)

The best quality of life at the end of life meant the ill person was in control of when they died:

I think it’s not about wanting to do it, it’s about being able to or having the opportunity to access that as an option like that whole, control over something. (Ani, sister)

Tiaki commented that she desires that level of being able to control her situation when her health condition becomes worse:

My expectations are that once I am- assuming that I become solidly symptomatic and the chemo isn’t either working or has stopped working or is intolerable that um- that I will start that process with them [assisted dying service]…. And that’s what, that’s what the assisted dying process has the potential to do. Is allow me to have that level of control that says, I’m still going to look like me. Because the physical changes in those last couple of weeks are horrendous. (Tiaki, person who wants an assisted death)

Manaia highlighted that knowing her mother was going to have an assisted death also gave their whānau a sense of control over what was happening:

It wasn’t you know, it [assisted dying] was a known. Sometimes fear of the unknown is… is scary especially when it comes to death, but it was known, we knew. So, every day we could work towards that, closer and closer; there was a deadline and, oh well a deadline sounds horrible like that. Um but you know there was a date, and we knew that that date might change or she might change her mind. And then that was okay as well.

Whatever happened, happened but she was 100% in control and that’s what the beauty of the assisted dying process is that they have to be in control. They know what’s going on. If they don’t know what’s going on then they don’t qualify, so she 100% knew what was going on. (Manaia, daughter)

Assisted dying helped the person feel less of a burden

The decision to have an assisted death was influenced by the wish to protect whānau from the burden of end of life care however, whānau did not agree with this because families shared that caring for someone at end of life was an honour and a privilege. Carlos said:

I think everyone just wanted- um obviously we wanted him to stay and it was just a lot of convincing him that he wasn’t a burden on any of us. (Carlos, mokopuna)

Furthermore, Tek who had a terminal illness said:

I want to not be a burden. I want to not- I want my whānau to have their last memory as somebody who had agency. Not as somebody who was powerless… That’s, that’s where you really lose agency when you’ve got health professionals who don’t know you, don’t know your whānau, don’t know your values, instructing you on what needs to happen next. (Tek, person who wanted and assisted death)

May recalled her partner’s situation:

He [partner] didn’t want to suffer and he didn’t want- he didn’t want whānau to see him that way. And he’d seen his Mum… ‘I don’t want to put that burden onto people and I don’t want to have that pain’. You know. Yeah, so he kind of had- was quite adamant from the beginning. So that was what he wanted. [May, partner]

Whānau supported their loved person to do whatever they needed to do to maintain hope at the end of life. This may have included supporting them to seek curative treatments or, clinical treatments, to extend their lives. It may have included providing palliative care; holistic care of hinengaro (mind), tinana (body) and wairua (spirit). May said, “He [partner] never did anything by halves… we did no kind of mainstream treatments; we did all alternative treatments.”

Manaakitanga (care) and kaitiakitanga (guardianship) included whānau providing end of life care. Ruski nursed his wife at home through her illness up until her assisted death:

Oh, like all, all the way through I, I, I nursed her right through to the end I was, I was her sole caregiver. She didn’t want anyone else. And I didn’t want- I wanted to do it anyway. So, but she was easy to nurse you know she could ah toilet herself and everything so there was no, no problem there it was just giving her the morphine and that yeah. (Ruski, husband)

It was challenging providing end of life care to someone they loved but the obligation to care was a priority and whānau stepped up and did the best they could. Ruski recalled:

… she [wife] just kept me going you know. She just said you know I’ve ‘got to be strong for her.’ So, I just tried to do my very best and whatever she wanted. And, and in the end, she was just living on coffee, and I had to go and get her you know, a takeaway coffee. Every morning at 6 it opened… so I’d be there at 6 getting her a coffee and then a little piece of chocolate that’s all she’d eat yeah… Yeah, first thing in the morning I had to go and get her, her breakfast virtually that’s what her breakfast [was]. And it was um like a cap, cappuccino, and a small piece of dark chocolate (Ruski, husband).

In the following story Whare Taonga shares how is brother invited him to become his kaitiaki on the assisted dying pathway, commenting that the process happened quite quickly and he was so very proud of his brother for having the strength to make this choice:

… And he [my brother] goes ‘I’m going to apply for it [assisted dying]. And I said, ‘Yeah? So, you understand the process of applying for the end of life?’ He goes, ‘Yeah they’ll just assess me; they’re going to send out two doctors [on different days] 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’ll have a kōrero with them aye?’ So, we organised the appointment and then there was myself and his ex-wife and they were looking after one of the mokos in the room. And I knew we were told not to talk in this [hui] unless we were asked by the doctor so that it didn’t look like we were intruding or [had] 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’s your decision, no one else can change that decision but you’. And that’s how proud I was of him to make that decision.
And in the second interview too with the second doctor we had hardly gone through 20 minutes of the interview and the doctor said to me, ‘Look I’m going to say right now that as far as I’m concerned you qualify for this process’. I haven’t read the report from the other doctor, so I don’t know what his ah advice was to you but um it won’t take me long to find out. And then actually if you want me to I can make a phone call? And we said, ‘Oh could you do that?’ Because everything was happening, emotions were high.

So, he made a phone call to the other physician and then he comes back and goes, ‘Well he’s approved it – I’ve approved it.’ So, and we, [brother and me] and we’re looking at each other, and [brother] goes, ‘So what happens next?’ And he [medical practitioner] goes, ‘Well when you would like the process to take- when would you like it to take place? And we were, ‘Oh we make a date?’ And you know we didn’t know all that part…

… And then he [medical practitioner] goes, ‘Well it only takes- by the time we do the authority papers and by the time we organise the drug to be brought for us, depends if you’re going to take it um intravenously [or] want to take it orally um and then by the time we get it, it takes about a couple of days and then we can administer’. So, we just had to back it up a, a little bit and we said to him [doctor]’can we um have a kōrero and then come back to you?’ And he goes ‘yeah.’ So, I then became the full um the advisor [kaitiaki] with them, the doctors yeah… We left and I, I said to my brother I said, ‘How are you feeling about that?’ He goes, ‘Wow, I did it, I think I, I did it, didn’t I?’ I said, ‘You did it alright. You’ve done it…’

Whānau kaitiaki supported the decision-making wishes of their whanaunga (relative) who had a terminal illness because they prioritised their mana motuhake (autonomy and independence):

I guess you know each one will have their own thing but, it’s basically it’s the person who, who’s dying needs to make all the decisions you know. I don’t think, I don’t think we’ve the right to do- make any of this, those sort of decisions for her. I didn’t want to be seen as forcing her to do it [assisted dying] or anything like that. I just said, ‘Well okay Babe, that’s what you want, that’s what you, that’s what you can, you can have.’ (Ruski, husband)

From the moment whānau heard that someone they loved was considering an assisted death they wanted to manaaki (care for) them on their journey. Mere, who was involved in her nephew’s assisted dying assessments commented, “We were all on this journey together.”

At first, whānau experienced a wave of shock and they felt distressed following news of a terminal diagnosis. Pōuritanga (sadness) began the moment whānau became aware of their loved person’s terminal illness and it continued until after they died and beyond. Grief was often intense at first; sometimes it could ease a little and then it could return in full force, depending on what was happening. Huia shared her story:

They have a specialist on call from the stroke unit. So, she was instantly available and she’s one of the really senior ladies up there [hospital] – she was great. And she’s part of the palliative care team as well…. and so, for us fortunately she was there that day. But she looked at Mum’s scan and said ‘this is a really big stroke; it’s a bleeding stroke it’s still occurring. You need to get your brother, and you need to find your brother and tell him to come up here because she might not get through the next few hours, so you need to come and say what you need to say.’

Oh my God it’s the most shocking Tuesday there ever was. And so, we, we, tracked [brothers name] down and he got up there and then you know she was taken to um upstairs to ICU. She stayed in there for a week, 6 nights. And then um, we kept being told that there was no hope from this, this was bad. Um. She wasn’t really speaking or, or anything. (Huia, daughter)