Kaitiakitanga Assisted Dying Pathway

Hine-te-Ao | Challenges kaitiaki (guardians) faced following an assisted death

Introduction

Whānau pani (bereaved families) took care of the person’s tūpāpaku (body), and they were involved i the tangihanga; they also carried out rituals to inter the body. However, this was a time when whānau experienced mixed emotions. They often felt proud of their loved one for fulfilling their mana motuhake as they achieved their wish to have a peaceful death. However, whānau also experienced deep grief and confusion at this time.

Some kaitiaki felt guilty for assisting (helping) the person to have an assisted death. Sometimes they expressed regret. Many people felt the need to keep silent about the assisted death. Most peoples’ grieving processes were complicated and prolonged and they did not seek or receive any support from mainstream health services. Only one whānau was offered counselling support from a hospice.

Privacy about the assisted death at tangihanga

Although several families spoke openly about the assisted death at the person’s tangihanga this was not the case for other whānau. Assisted dying was generally not mentioned at the deceased person’s tangihanga by the kai korero (speakers) nor was it communicated openly among whānau pani (bereaved families) to other whānau at the tangihanga. Kanga said his cousin’s assisted death was not discussed on the paepae (bench where speakers sit in the marae) because it was inconsistent with their normal tangihanga approach:

No, it [assisted dying] had nothing to do with, with anything we were doing because he had died. And because he had died, we apply a consistent approach, not an inconsistent approach”. (Kanga, cousin).

Most whānau pani (bereaved families) said they did not discuss the assisted death with other whānau pani who attended the tangihanga because the assisted death was private. May said:

[I]t just wasn’t talked [about]; a lot of people didn’t- most people don’t, didn’t know. It was only the close ones that were here… It wasn’t discussed, no. (May, partner)

Whānau who openly discussed assisted dying at the start of the terminally ill person’s end of life journey were more likely to agree with the person’s tangihanga arrangements following the assisted death. After Rose’s assisted death estranged family members (who were unaware of the post-death plans she had made with her sister and kaitiaki Tania) took over the tangihanga proceedings. This caused deep distress for Tania who was Rose’s primary whānau caregiver and her assisted dying kaitiaki. This highlights the need for whānau who wish to be present at the assisted death and tangihanga to become involved at the first phase on the Kaitiaki Assisted Dying Pathway; this will enable whānau members to take part in end of life discussions that include tangihanga arrangements:

And then of course suddenly [someone who arrived unexpectedly] turned it into a marae thing… and I felt, ‘whoa, whoa, whoa, who’s doing this? It’s my whare, you know I’ll decide what’s tapu in here and what’s not tapu’. So next minute bloody people are pinning sheets across up there and cordoning off the kitchen. Putting all the photos down. And… putting greenery all up on the wall and, and I’m like-…Then having people come in [my whare] that I’d never [met]…

It felt like a circus… The ones who had been absent all this time, it felt like it just became their, their parade. You know. And so, I’m organising the food and the this and that and bedding. So, of course all they’re doing is sitting there while I’m thinking, ‘well okay thanks! How many people are coming…?’ So, I’m organising beds and spaces and full on- making sure people are fed and got somewhere to sleep [here] and down there as well. (Tania, sister)

An assisted death is a legally sanctioned way of ending a terminally unwell person’s life (providing the person meets the strict criteria). At no time did the whānau who participated in the Waerea study view assisted dying as ‘suicide’ however, several whānau we interviewed said that an assisted death may be looked upon as suicide by others, including people at their marae (gathering place). Turama spoke to a respected kaumātua in her community who had reluctantly provided tikanga support to a member of their community who had had an assisted death. Turama shared his view that assisted dying is not tikanga:

[Assisted dying is] same as suicide and is not considered tikanga. Their thoughts on assisted dying and suicide is to push the tangi [funeral] process through quickly as in not having a tangi at the marae [ancestral home] and not being buried at the urupā [cemetery]. (Turama, sister)

Many whānau feared judgement or discrimination from others. Linda, whose mother had an assisted death said:

Some Māori ah don’t see that choice of end of life kindly. They don’t see that so, we didn’t take Mum to a marae. (Linda, daughter)

Dobby questioned whether someone could have a tangihanga at her marae if they had an assisted death; she reflected on an experience she observed concerning the treatment of someone who had taken their life:

… the recent old ways still prevail… there’s a certain person up here [name of region] who’s very well-known and his mokopuna committed suicide. I loved him dearly but, even at his tangi he said, ‘he doesn’t deserve to be buried here because he suicided.’ They did bury him (in the urupā) but they, he- he didn’t get the full honours so to speak. Yeah, yeah. (Dobby, sister)

After someone died many kaitiaki who supported someone to have an assisted death chose very carefully who they told about it, particularly those outside the whānau:

It’s the, it’s the big elephant in the room that nobody wants to say anything and no one did when I really stop and think about it, no one said a word about it… And that is it ah, is it, I think it comes across as it’s not the norm, it’s not the way it’s done. …You know you don’t do it like that but really, if you understand their story and you see them, in their state that they’re in you understand why. (Janice, friend)

Huia said she only shared information about her mother’s assisted death if the person enquiring was sincere as she felt it is a private matter.

I don’t feel [its] private, as a sense of shame about it. But I still haven’t gone telling lots of people but, it has come up a few times and I have um I, I you know I’d say, I’d say it. And if someone came into my work that didn’t even you know- that didn’t know me, making an enquiry… saying ‘my parent is, choosing assisted dying’, I’d be really comfortable to say, ‘I totally know what you’re going through right now because, my mum, Mum did also’. Because I don’t feel like we feel that it’s a secret more that it’s private. (Huia, daughter)

Whānau wanted to protect the deceased person’s privacy to preserve their mana following death. Bereaved whānau were also mindful about sharing the information as they did not want to “influence” others about assisted dying. Some kaumātua valued their privacy and did not appreciate others knowing their personal affairs; their kaitiaki are there to ensure their wishes were carried out:

Mum was very, very private; very, very private… I tell people, ‘She left this world as quietly as she came in.’ … we kept her one night [at home] … she wanted her- just her mokopuna. She said, ‘you [all] are most welcome, but this is their journey now.’ Like ‘you [all] are adults, you know’… like all her money she willed it to them and she said, ‘is this okay with you two?’ And we were like ‘you’ve done a wonderful job of raising us’. So, it was all about her and them by that point and I understand; I am in the middle of those before me and those after me and I am just a connector and a facilitator of that journey. (Linda, daughter)

Ella questioned why people had to know about the assisted death when her grandmother was such a private person:

Oh yeah there is [stigma about assisted dying] but that’s not why I don’t tell people. I just don’t really think that people need to know. Why do, why do they need to know that?… Yeah that. And my nan was an extremely private person like, barely anyone knew that she was sick because when we went out, I used to have to spend two hours helping her look like she was fine, you know… when we had visitors, [I] used to have to quickly puff her up so that she looked normal. Because not everybody could see her like that…. Yeah, and her brothers would come, and they relied on her for assistance with whatever they’re coming for. She couldn’t look weak in that moment. (Ella, mokopuna)

Linda tried to protect her mother’s local rural community from knowing how she died despite their persistence:

So quite, quite often, and because it is a small town and you know everybody knows everybody, and people just knew Mum was sick so… [name of disease] is the thing that they get told. They don’t need to know where in their body [they were sick] …but they, they’ll often say but like, ‘where? Or how?’… [They would want to know how she died] because they knew she was in a flat like you know [they would ask], ‘was it in the flat [she died]’ or ‘was she out at back at [name of rural region]? Did you take her back up there’… and they query about her tangi. And I always say that ‘she was in the hospital; it was beautiful, it was peaceful and we were all around her. It was lovely.’ And I always say after that, I’m so glad for once she got what she wanted. (Linda, daughter)

Ella commented she would share information if it was appropriate:

If somebody approached me and said, ‘hey look like, I have a family member and I have heard that you were also a family member, 100% [I would tell them]. But somebody just coming up to me and being like, ‘oh what was that assisted dying thing like?’ – [then] it’s like what? Like, ‘why do you need to know that?’ Like, if you want the information for a… purpose then yeah cool but, you don’t need it just for gossip like you know, that’s kind of where the line is. Like I want to help people. I don’t want to just, you know, give you information just because. (Ella, mokopuna)

Once the assisted death had been completed it felt easier for some people to tell others who had been left out of the ‘need to know’ loop. Ella said “By that point there was nothing to do so we were safe” from the process being stopped or interfered with. Linda explained what happened after her mother died:

[W]hen we got Mum to [name of town] before she was cremated, I couldn’t do it anymore. I couldn’t not tell the rest of the family it just felt wrong… Yeah, and they couldn’t stop it. So, I knew my Mum got her wishes. But for me personally to not have told her siblings- just felt wrong. So, I rang my aunty who was their spiritual guide as well in [name of city] and I said, ‘Look we-‘ She got completely in shock because she thought she had to tell [others]… yeah to lift some of that burden off me she, and she asked, ‘can I tell your father?’ And I’m ‘like yes, and then he contacted my sister. And I’m not sure what anybody’s first response is because again I’m just narrowed in on there [and] then. And it was their grief and my grief. (Linda, daughter)

After someone dies whānau are required to produce a death certificate to verify the person’s death. Many whānau we interviewed did not want ‘assisted death’ recorded on the death certificate and most did not know this was a legal requirement. Whānau considered this a breach of the person’s privacy as it could reduce the person’s mana after death if people knew. They were concerned about protecting the privacy of the person who had had the assisted death. Whānau did not want their loved person’s method of dying to be open to the public as they feared the deceased would be discriminated against:

[Name of AD doctor] as soon as he just said, okay, I just need to go and do the paperwork. We had made sure through the process with [name of funeral director] and from hearing other people to make sure we had the death certificate before, and everything filled out because Mum wanted to be cremated. And so obviously you need to know the cause of death and there’s going to be no comeback. Again, this was me wanting to fulfil her wishes as quietly and as quickly as possible…

Mum was on the pension, and you have the council [to] phone, power [company]… I would um screenshot it [death certificate] and cross that out [‘assisted death’] because why do you [organisations] need to know the cause? You just need to know the date she’s died and that she has died and that it’s [deceased’s name] … I’m like ‘no’ because people can use this information against her so I’m going to cross out anything that doesn’t need to be there…

So, there was a balance, there is a balancing act where we, we know that she is a pioneer. You know in choices she has made; she is a pioneer for our people, but her privacy. So, she would like for people to know this is an option and you can do it. Which she would not like people talking about, her experience. (Linda, daughter)

Ella recalled her distress when she had to produce her grandmother’s death certificate:

[We] had to go to one specific place, and they said, ‘Oh can we please have a death certificate?’… it says really clearly like ‘assisted dying’ or whatever it is on the death certificate. And I was just like really disheartened by that because I don’t know that was her [Nan’s] choice… and not everybody need- needs to know that. It’s actually cancer that kill- killed her. Not a [needle]. And we have a really, really small town. And I don’t need everybody in [name of rural village] knowing my nan chose it, chose that.

Oh, so we had to take her death certificate somewhere [MSD] and we knew the counter person … That moment was for us, not for everybody else… And we knew the person’s family and like- town gossips. And so, it was just disheartening… because Mum asked, ‘can we cross out the way she had passed away?’ And the lady said ‘no you can’t you know, change what’s on a death certificate’ which is fine. But it was just like, ‘oh man now it’s going to start because 1) we didn’t need everyone knowing but 2) we didn’t need to be approached in town getting asked questions.

Because the way we had done Nan’s send-off was very private, we didn’t need people coming up and we were already feeling yucky like, ‘oh is this what your Mum did?’ Like, we didn’t need, need extra stress… If they question that we don’t know where we would go in that moment, how we would shut that down and we don’t want to be those people being aggressive or, yeah, yeah. (Ella, granddaughter)

Whānau expressed deep grief complicated by the assisted dying experience. There was little to no trust in healthcare services to provide support to grieving whānau as assisted dying was a new way of dying in New Zealand. Managing personal grief was not easy for whānau, especially those who had a kaitiaki role to care for and protect the ill person before they died. Grief was often submerged, silent and complex and peoples’ mauri (energy life force) was negatively impacted. Whānau expressed feeling sad, depressed, anxious and at times distressed. Grieving before, during and following death is difficult at any time however, assisted dying added another layer of complexity for whānau to process:

He (uncle) did [find it difficult]. It was hard for him to sort of get his head around it yeah. Um he said, ‘you know I see him [my dad], I talk to him and I speak to him, and it’s just hard for me to understand that.’
… He understood it [his wish to have an assisted death] in the end that he [my dad] needed to have this control. That, that control that he wanted that control to be able to do that’. And he understood it and he accepted it but, I think it was just the grieving and the grieving for everyone I think it’s- it’s such a huge process for all, all of us yeah. (Gracie Munro, daughter)

Protecting the person’s mana by keeping the assisted death private also added its toll on whānau. Ella said, “my nan chose to have dig- dignity, leave it at that. Why does everyone need to know, know that? It’s not really something people need to know.” (Ella, mokopuna)
Taking care of the deceased person’s mana continued after the person died as their whānau kaitiaki wished to protect them from any form of discrimination related to the assisted death:

And then, I came back to [name of rural town] and then I didn’t talk about it at all and then, one day we were just in the car, and I just told him. That that’s what had happened, that’s, that’s how she had died. And I told him like a few things, but I haven’t really told, told anyone. 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 [assisted dying] 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… for me to carry on… (Linda, daughter)

Being involved in her grandmother’s assisted death was a huge shock for Ella who has a completely different mind-set, and it changed her whole perspective on life:

[W]hen people come up to you… and they’re crying because they’ve got to go put their pet down – you have no emotion at all because you’re like ‘I’ve had to put a person down. I’ve sat there and watched a person basically be put down, that’s the same procedure that your cat’s going to [have]. Like I don’t really give a shit about your cat!’ Like, that’s how you feel, like you get this weird [feeling] like, yeah… Or people start telling you a problem, their problems, and normally you’d be like ‘oh that’s so sad’ but you’re just like, ‘man that’s nothing like, honestly, I’ve had to sit in a room and watch this [assisted death] like.’… emotions change towards, towards so many different situations…. your whole mindset, and how you approach everything emotionally changes. (Ella, mokopuna)

At the time whānau took part in a Waerea study interview many people were still experiencing complicated and prolonged grief following the person’s assisted death:

I think [grief and healing] it’s quite individual to the person. Like I know how I am and how I feel. But for other people like, yeah, I know other people that have had whānau do it, find it really hard. Like they’ve said to me, ‘I still can’t get over it. I still, I still think I still dream about it all the time and I, didn’t want them to do it but they did it and I had to accept that that was their wishes’.

(Waerea study participant)

When someone dies their death impacts our oranga (wellbeing), hinengaro (mind-emotions), tinana (body), wairua (spirit), whānau (family) and te taiao (environment). Because assisted dying is new there are new things to navigate. As we have said already, due to the need for privacy many whānau felt unable to share their mamae (emotional pain) with extended whānau, friends, colleagues and their community. Their grief was often intense and long lasting. Many kaitiaki experienced some form of shock, distress and many felt a sense of guilt or regrets (some felt that they had helped to hasten the death because they supported the person). For example, initially May experienced guilt because she felt as though she should have talked her partner Tama-D out of having an assisted death. However, she processed it and realised it was what he wanted. Tama-D had unbearable suffering, especially in the last few days of life:

But I felt like, oh perhaps I should have talked him out of it? Perhaps I should have, I should, should, should, should of done this; maybe he could have been here’. But when I- once I kind of processed it all and realised that it wasn’t about me and it was what he wanted and, and it was, I mean he was suffering so much in those last few days it was awful. It was terrible. And I wouldn’t of wanted to see him suffer any more. But I think yeah… it was a little bit hard for me to process. I went through [it]and then I kind of came out the other side thinking [differently] (May, partner)

After her mother died Huia’s aunties who had been excluded from the process found out about the assisted death and were upset, they had not been told or included; Huia said, “the two sisters have found out – very hurt.” Huia said her mother’s partner told her aunties:

And I said [to Mum’s partner] ‘why did you tell them? Mum didn’t want them to know for this very reason! Anyway, that all sort of blew up… they have realised now that Mum felt like she had to make that choice for herself and that was the best thing and that… [I told them] ‘don’t even come here with your judging. You can judge Mum between the two of you [sisters]… but don’t-we don’t want to have a conversation with you about it being wrong or not the choice you’d make – of course it’s not. You’re not in this position but one day you might be’ and so, so, anyway but that was after [Mum died]. So, Mum had no knowledge of any of that. It was a month or so later. (Huia, daughter)

There were reasons specific whānau were excluded from being present at the assisted death. Manaia explained, her mother left out her sisters because they were known to be judgemental people

But of course, they are also her [mother’s] sisters and they loved her and so I said to him [stepfather] it’s hard because they are hurt. They have hurt feelings because Mum didn’t want them to know and none of us told them. And they felt like that we should have’. So, they’re hurt by the, the choice that they weren’t trustworthy enough. So, I think that’s a bit of a different thing. Also, they don’t really approve but, I think you have to temper that with the fact that if something really big happened with one of my siblings, and everyone thought, oh let’s not tell Huia because she’s too judgy or she won’t agree or approve’, I’d be quite hurt. So, I said, “I think we need to just take these, these words [they have said knowing] are also from a place of real hurt’. (Manaia, daughter)

Um, so yeah having some people and they don’t need to be necessarily trained experts… I’ve had counselling that has supported me. Um in this instance I haven’t chosen because this is so new, I’m not sure that there would be counsellors that have enough awareness of whānau who traverse this space, particularly Māori. So, in other countries they have other people but don’t have that um maybe that Indigenous lens on it because not many Indigenous people as far as I’m aware take this opportunity up because of their beliefs. Um so I wasn’t confident that someone could navigate me through that well. Because my main thing is to uphold our mana through this process… (Linda, daughter)

There were many things whānau felt helped soften and support their grieving process. Whānau we interviewed in the Waerea study often described the person who chose to have an assisted death as a trail blazer. A non-Maori person who had an assisted death wanted her Māori friend to tell others there was another way to end pain and suffering:

She wanted people to know there’s another way; it’s not just you have to suffer. You don’t have to suffer there is another way and… she wanted people to know. (Janice, friend)

Whānau said they felt proud of the person who had the assisted death; they valued their initiative, bravery, and leadership in being an assisted dying trailblazer. They felt good about supporting the person to fulfil their wish and uphold their mana motuhake.

Being together as whānau at the assisted death and walking alongside the ill or dying person afterwards, fulfilling their cultural obligations, helped healing. After their whanaunga (relative) died whānau drew on their Māori values and tikanga and these helped to strengthen them; they provided structure during a challenging time. Only one person we interviewed was given enough time off work by their employer, which they found very supportive for their healing process.

Only one person benefitted from receiving support from a health professional following her mother’s death; counselling was needed to support her with accumulative stress and exhaustion:

So, the counselling was good but also grief counselling. I think my perspective was if it had been someone on my level [who died] a husband, a sister, or a child – someone that wasn’t the natural order of things you know whereas a parent is more the natural order of things, I suspect you process grief quite differently. And I think that that would need a whole different set of grief counselling whereas for a parent, it’s awful, but it is the right, the correct order of things.  (Manaia, daughter)

Whānau had different spiritual beliefs and ways of staying connected to their loved person after they died and these continued bonds helped them in their grieving. Kanga shared his belief that “[death, it’s not an end. We just go back to being as elements in the sun.” Manaia recalled:

So, I told Mum, asked Mum if she could send buttons and beads (after she died) and so, she does. She sends buttons and beads… I’m very spiritual. I did say a prayer for her as she passed. She asked me to do [it]. But as a family we wouldn’t normally pray. (Manaia, daughter)

Mokopuna Ella reflected that it helped her spiritually to see two manu (pigeons) at the window and then they flew away after her grandmother died. Also, she recalled her nan gifted each of her whānau who were closely connected to her with a spiritual koha:

She left us each something. It’s really strange like we both got new jobs as soon as she passed away. Oh, my sister got a job… so, but I got a cool opportunity. My mum ended up getting a real cool job she wanted. My dad moved home, and he got him a whare over there- like everything is, just afterwards, just been okay. So, it’s just like, I don’t really feel like I need to you know, go to counselling or anything. (Ella, mokopuna)

New healing approaches are needed to support bereaved whānau before, during and following an assisted death. This includes assisted dying bereavement education and training for health clinicians and Māori kai rongoā (natural healers) and spiritual leaders. It also means preparing whanau for death, regardless of whether it’s from natural causes or an assisted death:

I think of death as putting life into perspective. Every day I accept death is coming fully and unreservedly. So, what death does, it gives me a focus on life. When you, appreciate how fragile life is, then you accept that death is inevitable. And that is a natural part of the order of life. It gives life more meaning. And it allows you to live better in terms of everyday and do things which are important and which make a difference for others. I think it’s important. (Kanga, cousin)

Only one whānau member accessed counselling to support her stress and exhaustion after her mother’s death. However, others could have benefited from loss and grief support (rongoā healing, counselling, spiritual healing), however, most were not offered it. Some people did not think healthcare professionals had enough experience or training yet to work with assisted dying bereavement:

[I]n this instance I haven’t chosen [counselling] because this is so new, I’m not sure that there would be counsellors that have enough awareness of whānau who traverse this space, particularly Māori. So, in other countries they have other people; but [they] don’t have that maybe that Indigenous lens on it because not many Indigenous people as far as I’m aware take this [assisted dying option]… Um so yeah having some people [to help] and they don’t need to be necessarily trained experts. (Linda, daughter).

Manaia recommended whānau should have access to support groups and counsellors to help them process their grief; she believes the Assisted Dying Service should provide this as part of its role:

I think a support group, and I think [the] assisted dying [service] themselves the service themselves, should have counsellors that reach out to the family or the whānau and say, ‘we realise that your whānau member has just chosen this way of dying, we offer a grief support’… Either meetings or one on one. (Manaia, daughter)