Kaitiakitanga Assisted Dying Pathway

Hinauri | Challenges whānau experienced

Rangirua-Ngākaurua - Whānau felt uncertain or in two minds about assisted dying

Many bereaved whānau told us that even though they voted for the End of Life Choice Act (2019), they felt conflicted about assisted dying. Many people had questions or personal views that they put aside as their priority was to care for the person who was terminally ill who wanted an assisted death.

It was common for people to support assisted dying in principle, however, when it came to using the EoLC Act (2019) for someone in their own whānau people felt ambivalent *had mixed feelings) about it:

I would say majority of people that I’ve spoken to like family members and that, they’re all pro assisted dying. And then as you talk furthermore about it um, yeah, they’re not sure if they would actually go through with it, yeah (Ani, sister)

… 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. (Daughter of Tek)

I always supported him and what he wanted. Um I guess, yeah, I just thought I would always honour what he wanted. Sometimes I did have a few questions. Because I had, this bit of a, bit of a viewpoint which I did tell him about, but it was kind of like I thought, ‘perhaps your spirit needs to go through all that stuff, maybe that’s your purpose’. I don’t know but then that kind of changed… I don’t know, I just supported what he wanted. I guess what he wanted was the most important thing. (May, partner)

Part of protecting her mana was upholding mine. Because, I would say to her, ‘you get to go, and I have to live with it Mum.’ So, not around her choice, like these were around lots of choices that she wanted. And I would even say to my husband you know like, ‘how do I live with this? How do I live with this?’ So, so me being part of this is me finding somewhere to put it. This is very important to me that I for me to carry on, um, for me and her to carry on… (Linda, daughter)

Carlos said he ‘regretted voting for it’ when he heard his grandfather wanted an assisted death because he wanted him to live for as long as possible. Carlos’ mother, Gracie Munro said, “I think we all thought that oh why did we vote for it? I don’t want him to go!”

Whānau told us that assisted dying was “new, strange, weird and different;” it was challenging to discuss assisted dying. Whānau wanted to uphold the person’s mana motuhake despite feeling ambivalent (feeling confused or having mixed feelings). Moerangi described the anxiety she felt when her brother-in-law told his whānau about his intentions because the cultural norm would be to advocate for him:

Yeah it, I guess as, you know eye, eyes were meeting in the room and um some looks [going] around; ‘Are you, are you going to respond to that or do I need to?’ Or ‘what do we do?’ And I guess it, because I was um, a [health professional], I, I feel like people had looked to me to, to address that… Ah, so my response was ‘gulp’… I was um quite anxious about, about that even being explored as an option. Um then on top of that, I had a professional um role within my organisation who he was a patient with.

Oh my God, what are we going to do in terms of managing this as a whānau because if he really does want it [assisted death] then, there’ll be some, some fractions of our whānau who will agree with it and others who will be very, very opposed? Um. And that would require us to advocate for him. …I responded um but I, I responded in a way where I, I tried to um, tried, tried not to show how anxious that statement had made, made me. But I also wanted to, communicate to him in a way that whatever he chooses is, is, is what we will do. (Moerangi, sister-in-law)

It was difficult for whānau to grasp how unwell someone was and that the assisted death would put an end to their suffering. Whare Taonga reflected on talking to his whānau about their brother:

But I think the hard thing was that because [Mr Zion] was walking, talking, and in his mind, he was still our brother, they couldn’t understand that part. I said ‘yeah, but this is just, this is a moment for him and probably in half an hour he’ll be down again, and he’ll be in pain… you know he, he’s doing that for us. Don’t let him try and do that for us all the time, because that’s not going to look like that the next time, he tries this for us, it’s going to look worse than that.’ So that ah we, we got onto the kaupapa, and we knew a time and date. (Whare Taonga, brother)

Most people who wanted an assisted death were careful who they told. The ill person discussed the best way to tell other whānau with their close family kaitiaki. Sometimes this meant telling only specific people. Sometimes whānau chose not to involve people known to have significant mental health mamae to avoid putting additional stress on them and the whānau; Linda said, “And so she [whanaunga] was none the wiser any of this was going on and we decided to keep it that way because it always became very volatile”.

Manaia’s mother chose not to discuss her choice to have an assisted death with extended whānau and friends, neighbours. The assisted dying doctor had cautioned her against this in case of judgemental backlash:

Nah, we didn’t discuss it with anyone. Um Mum wanted to [but] after the doctor had told us that, you know ‘there might be people opposed’ um, Mum’s concern was two of her sisters. Because they’re quite um, excitable um. So, she didn’t want them to know because she knew that they’d kick up a fuss. So, we didn’t tell anybody. (Manaia, daughter)

However, in several cases the whole whānau were told. No matter who was told, people who chose to have an assisted death gave careful consideration to this, particularly when it involved children. Tek said he chose one sibling to tell first about his terminal diagnosis and plan for an assisted death:

And [sister] was the first one in the whānau that I told. Um. Because we’d always been so close… [she] turned up one night and we had a conversation with the kids so that they were clear about what was going to happen. (Tek, person who wanted an assisted death)

The person who wanted an assisted death sought support from their whānau to uphold their wish. Linda said “we became… the inner sanctum. So, there was me, [eldest daughter] and my husband.”

Tiaki, who has a serious illness and wished to hasten her death using assisted dying services commented:

I have always been honest with my kids about all, all sorts of stuff, wisely or not. And I told them right away. Part of me wanted to go, ‘don’t tell them, keep it from them, don’t burden with them, burden them with this until I need to.’ Um but in my own research I’ve spoken to so many whānau who felt cheated by that um…

So, the whānau that I’ve spoken to in my [field of] research were often quite resentful that they felt that the meaningfulness of the last (even if it is a few years), the meaningfulness of that time was lost on them because they were in taken for granted mode and their loved one, usually their parent, knew that they shouldn’t be taking this for granted so they were kind of robbed of that opportunity to make the most of it … but I really would have preferred to not tell anybody you know. So, it was, there was a definite weighing up there, but I came down on the side of telling them. (Tiaki, person who wanted an assisted death)

Whare Taonga said his brother initially only told him and his x-wife however, once the dying date was chosen, they had to think about the best way to tell the rest of the whānau:

[H]ow we’re going to bring our family along on this, on this journey. Then decided we’d do a 7 day, let’s do it in 7 days’ time from that last appointment [with the assisted dying doctor]. 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. (Whare Taonga, brother)

An online hui (meeting) with immediate whānau was organised by Maddie’s whānau:

So, we had a, a group call. Yeah. Had a group call and a family meeting. And Mum let everyone know that she had applied for it. Um. And, just wanted to have everyone’s support behind it… And asked if she could get that from everyone. And everyone agreed and gave it. (Maddie, daughter)

Only a few people told us that everyone in the whānau knew about the assisted death from the start. Te Iringa called a whānau hui after her mother spoke to her about her wishes:

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, 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 the other medical staff there. In the GP clinic. (Te Iringa, daughter)

Jackie-X went to visit her brother who was a very private person. She thought her brother may not have wanted to let people know about his condition as his physical appearance had changed so much however, the main reason was because he was a humble and private person:

So, when we found out he [Mr Zion] was sick… anyway I went to go down for the weekend to stay with him. Maybe even before that I think he was trying to hide it because we could see he was deteriorating, his weight loss. I was asking him ‘are you alright bro? You’ve been sick for a lot.’ So, [he said] ‘oh I’ve just been slowing down,’ and his headaches had started up. [He was] Very, very private. Very quiet and private. No, he did not want any of that [telling everyone about his terminal illness]. So, when he- because he didn’t act, it took him awhile to give us permission to create this [name of social media whānau communication page] so we could communicate in regard to once we found out because he called a whānau hui. (Jackie-X, sister)

Huia made the point that because assisted dying is so new there is a lot of caution around telling people. However, as there is more exposure and experience the sense of fear of judgement and discrimination may hopefully subside:

And I think that [secrecy about assisted dying] will probably change as time goes on and people become exposed to this happening and with people around them. So even one of [Mum’s] best friends said… her son in law, his mum who she was really close to, and Mum knew her, she [said] this [assisted dying experience] happened with her last year and Mum said, ‘Oh?’ Mum was like ‘oh’ because she knew she’d died but she didn’t know [how]. And so, this friend that Mum thought might be judgy or a bit judgy was like [to my mother] ‘that’s so brave.’ And she said to [Mum] ‘I’m so proud of you.’ And…, then Mum said ‘I should have told her earlier’ sort of thing. (Huia, daughter)
But I said, ‘you didn’t know.’ And then um my daughter [name] she told one of her friends and her friend said, ‘my nana did this… 3 weeks ago, like just at New Years’. So, within the month so [daughter’s name] then suddenly had a person who she could [talk to] … She said ‘I don’t even know why I told her. I did and then it turns out that she totally got it. And so now I’ve got someone I can talk to about it.’ And I think it’s we, we kind of chose this [option not to tell people] out of respect for Mum’s privacy. (Linda, daughter)

It helped whānau when they had a good understanding of why the person chose the assisted death, especially when they knew it would end pain and suffering. Although the relative or friend who supported someone to have an assisted death may not have agreed with assisted dying themselves it helped ease their ambivalence (mixed feelings) when they understood the reason the person had requested it:

You know you don’t do it like that [i.e. not normal to die by AD] but really, if you understand their story and you see them, in their state that they’re in you understand why. Yeah, yeah if you see what they went through. Yeah, then you will understand why they, they chose that. (Janice, friend)

Assisted dying is new and some whānau said it was a “different and strange way of dying”. Because of this, whānau thought very carefully about telling their tamariki (children) and mokopuna (grandchildren) who would be attending the assisted dying day and procedure. Parents and grandparents found their own ways to explain to their tamariki and mokopuna why the person chose to have an assisted death. Daughter Linda recalled:

I told the kids that ‘she [Nan] just ah doesn’t have the same coping mechanisms that other people have’. This is how I’ve had to explain it to the kids…” (Linda, daughter)

Olive (mokopuna) said it was important that she and her husband were honest with their son who was old enough to understand his grandfather would be dying soon:

One thing that was important for us in terms of the kids, we wanted [name of son], our eldest to- we didn’t want to lie to him what was happening, we didn’t want to cover up what was happening. So, we tried to talk to him in a way that he would understand what was happening. And I think like because he’s such a sensitive kid, 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’. And um [son] was amazing. Like he didn’t, he said ‘he didn’t want to be in the room when it [assisted dying procedure] happened’. But then, after it happened, throughout that, the rest of the afternoon we kept finding him just going and sitting with [grandfather’s tūpāpaku] and holding his face and [son] was amazing like. And all the kids were like- I think all the kids who understood like obviously [young cousins name] couldn’t understand but, all the kids [understood]. 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, mokopuna)

Moerangi reflected that whānau have the cultural responsibility to manaaki (care) for the person at the end of their life, including looking after the children… some people have unfinished business they need to attend to before they cross the ārai (veil) and their whanau are there to help them:

[Brother-in-law had] unfinished business- you know, ‘what was going to happen with the kids um…[they] depended on him a great deal as well? … it was a journey of you know we had cultural responsibilities of course to him as a whānau um. Responsibilities to his children. Ah and then, expectations and obligations from the extended whānau as well. And responsibilities back to them of course. (Moerangi, sister-in-law)

Whānau placed the person having an assisted death at the centre and they did everything they could to support them and meet their needs. However, it was normal for whānau who supported someone to have an assisted death to feel uncomfortable about assisted dying. It may not be what they personally wished for the person they loved but at the end of the day, they came to understand the level of pain and suffering the person was in, and so were able to put their wishes first:

I think there’s a couple that, that will be against it [assisted dying] but will ultimately go with what, what Dad would choose to do; they’d voice that they didn’t want it to happen, but they would ultimately also support. The others would just be not wanting the end to come sooner than it has to. (Ani, daughter)

Well, we will support Mum in what she wants to… do. Um we’d choose the other option [die naturally] 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 um 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. (Ngā, daughter)

Some people met with opposition over their choice to have an assisted death because they felt as though the person was giving up on living. Ruski’s wife spent time justifying to her whānau why she chose assisted dying:

Yeah, so and she, she [wife’s favourite sister] came around in the end… that we had a couple [against it] but my wife talked her sister around, one of her sisters. Yeah, she [sister] was saying oh ‘fight it, fight it’ and my wife is saying ‘well I can’t. It’s too late.’ (Ruski, husband)

It took careful navigation to ensure everyone was taken care of when the family was informed about the assisted death. Whare Taonga had his own way of caring for his whānau when he told them about his brother’s terminal condition and his wish to seek an assisted death:

[I said] about this ‘ngāngara that was in him’ and how ‘this ngāngara 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…. 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 end of life option. I said, ‘he’s undertaken and has been approved and will be taking the end of life option’…. and I said, and we have a date and a time when this is going to happen. And it was like, oh the faces of my brothers and sisters, especially my oldest brother…

Yeah, couldn’t understand all of that he just nah, nah, nah, nah and [he] just walked away. And then it had to take [Mr Zion] to go around and awhi him. Which made me quite furious that he was the older brother you know. And I said ‘well, it is what it is. What do you want to do? You can’t change his life; you can’t change his path. Look at it [him]; he’s smiling. He’s that’s the best I’ve seen him since he’s been sick. Let’s continue his journey that he wants to lay down.’ I said that’s all we can do, is be the brothers and sisters we always have been to our brother’ you know. (Whare Taonga, brother)

Gracie Munro’s father wondered why his whānau were upset when he told them he wanted an assisted death. It was a “massive thing” for his whanau to experience as they were trying to cope with news of his terminal illness and death and on top of that they heard he was going to die sooner from having an assisted death. Gracie Munro said her father was surprised at the reaction of his whānau at his choice to have an assisted death, “What’s the problem… Why is everyone so upset? And you guys should be okay with it too” was his attitude because for him, assisted dying offered a way of gaining back control at a time he felt like he was losing control over his body and his normal lifestyle.

It became apparent during a whānau hui that Gracie Munro’s whānau had mixed feelings about her father’s intended assisted death. Both Gracie Munro and her son Carlos agreed “It was the grief” that made considering the assisted death difficult. They accepted the assisted death however, as mokopuna Olive explained, they were struggling with their own grief:

[H]e [grandfather] was kind of confused (not confused) but wondering why everyone was so upset. And we’re like because… ‘we love you and we don’t want you to go through with this.’ It wasn’t like the gravity of it. Like for him 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, mokopuna)

Alongside all of the normal end of life caregiving obligations (driving people to appointments, helping with things at home, providing personal cares and administering medications, helping to support land succession, for example), trusted whānau often acted as communication go-betweens helping to tell other whānau about the health condition and the person’s intention to have an assisted death. Telling whānau about assisted dying was a huge process. Most people who wanted an assisted death only told immediate whānau. Assisted dying was generally thought to be a private matter. Sometimes keeping the assisted death private was to with practical matters:

I said to them [immediate family] ‘you need to keep this to yourselves please. Please don’t tell your friends yet because I haven’t told your uncles and aunties, my brothers, and sisters.’ I said, ‘you were first, so you need to give me ‘til Saturday, midday Saturday if you want to share it with your in laws and your immediate, extended whānau.’ (Whare Taonga, brother)

There may have been people the ill person did not wish to know; sometimes they were afraid someone might try to talk them out of it or say something judgemental. Ani, whose brother wanted an assisted death said, “I don’t know; I kind of feel it’s a mixture of both [secrecy and privacy]. Like secrecy because they don’t want people to talk them out of it”.

Another reason for not telling people was to protect specific people from becoming overwhelmed on the day of the procedure, particularly if they could become overly emotional.

It was important for whānau who wanted the assisted death to have people around them that they trusted and felt safe with. Te Iringa explained, “The only reason I didn’t say anything about it was because Mum didn’t want anyone to say anything about it. Now, it’s Mum’s wishes [that matter] so I’m like ‘well.’”

Kate said she hadn’t told whānau about her decision to have an assisted death. She would not discuss her plans with specific whānau members who she felt would not support her:

Yeah, and I think a lot of it [not telling whānau] has to do with people not being open to listening. So, I don’t want to sort of like waste my time and yeah, and like we just don’t talk about those views… I think that also has influenced my decision to not have certain family around you know because it’s- I don’t trust them. I don’t feel safe around them. That’s what it comes down to. (Kate, person who wanted to have an assisted death)

When Linda’s mother wanted an assisted death Linda said, “[W]e weren’t feeding information out. We kept it [private] because I didn’t understand the process and at any time Mum might have said “I don’t want to do it”.

Whānau commented that the person who wanted an assisted death may have feared telling extended whānau, friends, neighbours, work colleagues and others about the assisted death because they were afraid of negative feedback. When Linda’s mother wanted an assisted death the assisted dying medical practitioner explained:

[T]he doctor pointed out that there’s still a lot of controversy around it. Just like there is around abortion and COVID and vaccinations and you know he said, ‘there’ll always be people who oppose’. So, he kind of, warned us about that and said, ‘it’s entirely up to you whether you tell people, or don’t tell people. But if you tell people, you might come up against these you know’. (Linda, daughter)

Assisted dying is new and some whānau told us they felt uncomfortable and confused when they were first told about it:

She [sister] just happened to- we were just talking and she just happened to mention something [about assisted dying] and it just sort of went over my head. You know, I didn’t think twice about it. I sort of- it sort of jolted me a little bit and then I thought ‘What, what did she just say?’ And I just let it slide. (Turama, sister)

Well indirectly he [cousin] got me involved… But the next time I saw him he also mentioned it [assisted dying] to me too. Oh, but I was a little bit flippant about it because I didn’t want him to be speaking about that. I wanted him to focus on living. You know it was my way of trying to, ah keep that conversation at a distance… I took the organic ngāware path. And just went with the flow. (Kanga, cousin).

Some whānau we interviewed were interested in exploring assisted dying as an option but then did not go ahead with it. Some people thought about it, obtained information and made a decision not to move ahead. Sometimes this meant considering the views of others who may not have been supportive:

I guess I was just making enquiries at that time and um, but it, I soon realised it was not ah going to eventuate because number one the reason was that [sisters name] believed she was going to live ah a lot longer and there were and the um, you know the um, opposition from, from my other sister would have made it impossible. It was never going to work, and I wasn’t going to take that on, on top of everything else. (Dobbie, sister)

Telling close whānau about the date helped to include and prepare them. It gave people of looking after themselves as they had the option of choosing if they wanted to be present and participate on the day or not. But it was the timing of telling people that was challenging. Sometime people were only told days before the procedure. Linda’s mother asked her not to tell people the date she was going to die:

I just kept saying like ‘can I, can I, is it time to tell them? Is it time?’ So um, so then [eldest daughter] got home and then me and [husband] had agreed regardless of what Mum’s saying we need to tell our children because we knew we might be it – we might be the only ones. Or, or even one of our daughters might have said ‘I don’t want to be a part of this’.

So, me and my husband had committed that at the end of the day it might only be us in that room with her. It was, if she was getting a choice we were getting a choice, everyone gets a choice… And that’s a hard conversation to have to say to them ‘I’m so sorry to tell you, that Nan has chosen this Friday’. Yeah, they knew it was coming because I told them when [AD doctor] visited. I think it was, I think it was the Tuesday [before the assisted death on Friday]. (Linda, daughter)

Linda commented it was a burden for whānau knowing the date someone they loved was going to die; she experienced the “Burden of knowing the date of AD but not telling siblings because they could try to stop it.” Linda wanted to protect her mother but found it very hard space to be in saying, “But just probably the scariest thing is just the knowing the actual date and time. Yeah.”

Knowing the date someone was going to die often played on peoples’ minds:

Yeah, and so, and so [eldest daughter] … for her end of year she’d decided with her boyfriend a trip to [name of country] that was going to happen like a, a week before oh, like 2 weeks before this date. And so, I think it was maybe a month before and I thought ‘oh my god – for a month… I know the date my mum’s going to die’. So, I told my husband.

He was there, he was there for that weekend, and he came back to the flat. And I asked her [Mum] is it okay to tell [husband] when he comes?’ And this is how I knew Mum knew exactly what she had chosen because, I worried ‘did she understand?’ Like after she picked a date that didn’t exist, does Mum understand because she was taking morphine’. But I knew she understood because we sat down together at the table… and we had a cup of tea and we talked about it, the three of us. And about some of her wishes, wishes that [husband] could support us with (Linda, daughter)

Whānau kaitiaki were not only protective of their own family when thinking ahead to the assisted death; they were also thinking about the safety of the assisted dying attending medical practitioner. Whānau may have worried that there might be trouble on the day of the assisted death (this is discussed in more depth in Hine-te-pō – Phase 2):

I mentioned that in that space I was very worried about [name of AD doctor] and you know my one of my first conversations with him was ‘what if somebody acts to stop this? What if someone verbally or physically starts to act to stop this?’ And I wasn’t sure who it could be… [name of sister] was a particular concern for Mum. Mum asked for her not to be contacted. Um.

And just because of previous behaviour um but, even if mum was dying at home very naturally, [name of sister] could have been like that even if mum was watching TV, [name of sister] could have been like that. So, I don’t think it would have just been isolated to um, ah this assisted dying process. I just think family are probably just generally aware of the ones who might be more at risk of, of reacting badly… (Linda, daughter)

Most whānau had not heard assisted dying being discussed in their communities. Discussing assisted dying in a safe environment will help whānau, hapū and iwi to increase their understanding about assisted dying. This will help to reduce fear and hopefully negative judgement and discrimination against whānau who choose to use the Act. Ani explained:

I’ve been around a lot of Māori communities, [community] run events, you know things lately and over the last year and no one has spoken about it. I think, until I bring the conversation up and then, then I’m getting, then I get the questions. …But um yeah, the amount of people that have no idea, all they know about was there was a referendum and you know that’s basically the, the max, the limits of their knowledge on it. And they a lot of people I, I’ve spoken to have said that ‘that needs to be talked about more’. We need to lift the um secrecy, the shame of it kind of thing, and like needing, people to come in and educate. (Ani, sister)

A lack of understanding about assisted dying might have been the reason one iwi refused whānau who tried to preorder marquees for the tangihanga. The iwi declined the order because the person had not died yet. The assisted death was scheduled the following week. Jackie-X said:

[S]o we went to [name of iwi] for the marquees because they provide marquees for tangi if need be… they wouldn’t in this instance… because he [brother] hadn’t passed”. (Jackie-X, sister)