Hina-te-Pō Phase 2

Dying – A Sacred Transition

Palliative Care Clinician’s Views of Assisted Dying

A Continuum of Good Palliative Care

David Brown (rural GP) discussed his role in palliative care. He believed his main role was to support people to die well, assisting them to have a good death as a medical intervention is not required in assisted dying:

I’ve witnessed that so many times in my career. That I am doing assisted dying. All I’m doing is keeping them comfortable. And yes, palliative care keeps them comfortable but often they’re unconscious; they seem to be in pain. We keep giving them lots of morphine and stuff – we don’t stop it when they go unconscious. And we are assisting them to die with chemicals slowly. (David Brown, Rural GP)

Duncan (palliative care doctor) also thought assisted dying was end of life care:

That’s how we see it here [health organisation] and we think it’s, it is an end of life care, option that has become legally available in the last couple of years and so it’s something that can be [and] that we’ve added to our, very limited toolbox. There aren’t that many tools in the palliative care toolbox and so this is an option that is available legally.

But it’s an option that we can’t talk about; legally we, we can mention everything else that’s available. But we can’t talk about this as an option even though, which, which is different to every other medical healthcare treatment in New Zealand where you do have to talk about all the different options, even if some of them aren’t in practical terms available. (Duncan, Palliative care doctor)

Passing on the Baton

Kumarahou (kai rongoā) considered Māori views of death and dying and how assisted dying aligns with this:

And, and so the important thing with, with assisted dying I think for, from anybody’s point of view, particularly from a Māori point of view is you pass on the baton. You know and, and you gracefully drop out of the race. You know now, I think the whole reason for the [EoLC] Bill… some people see assisted dying as being almost a mechanistic sort of thing you know… When we actually accept that life is, is, is a terminal condition that we really need to treasure and live it well and in actual fact graciously, well in actual fact, [face] the time has come to let it go. (Kumurahou, Rongoā practitioner)

Kaye discussed the need to protect the māuiui person who wished to hasten their death as well as those involved in the procedure and assessment, including the bereaved whānau and the assisted dying clinicians:

The protection of the people who… were chosen to be [ending their life]; they need protecting. And those who wanted to be [there] but wasn’t informed, it was because of the choice of the person. At the end of the day, it’s the choice of the person. (Kaye, Tohunga)

Pania (hospice kaitakawaenga) reported feeling shocked when one whānau she worked with had an assisted death. She understood their reasoning for keeping the assisted death private:

One whānau in particular I can think about they kept it quite small in their circle and then for others it was quite a surprise once it was… once it was over. But it was a bit of a, a shock so, I can understand that. (Pania, Hospice kaitakawaenga)

Michelle described her role of assisting a māuiui patient who was going through the assisted dying process. Michelle was not involved in the procedure but took on the role of listening to Hine during her journey:

Hine… she pretty much just gave updates during her process, and I think it was just to relay her experience of what she was experiencing through the assisted dying process. Um like things like ‘hey I haven’t heard from… and this service as well to kind of help me make the decision.

But I think she was just trying to grasp at other services who would give her the support or maybe help her with the answers and the questions that she wanted. My support really was to listen to be quite honest. It was never to enhance anything or accelerate anything in terms of, you know her assisted dying questions or you know point her where she should go, those types of things. (Michelle, Hospice nurse)

Michelle had initial concerns that Hine may not go through with the assisted death due to being anxious. But Hine was calm and certain on the day:

I’ve never been involved in assisted death before and I had no idea what I was really walking into. And Hine is probably one of the most anxious ladies I’ve met in a, in a long time; she really, she worried about everything and everybody… was always quite unsure about the decisions she was making and so I worried (well I wondered) whether she would go through with it… I wondered whether she might change her mind on the day of.

… I’ve never seen her look so sure of herself. She was calm and yeah, completely at peace with her decision. You could see that in [her] and she shared that with me but in, in her…she verbally… thanked me for my care… you know gave me a hug and… she said to me, she said ‘I’m not, I’m not scared’ she said ‘I’m doing the right [thing], I’m ready now and I’m doing the right thing.’ And she, and she, you could hear it in her voice, and she looked very sure of herself.

And so, for me that was quite incredible to see her, and, and nice I guess because you just don’t, you don’t know do you? You don’t know what it will be like; is it, is it scary? [I]n theory you can think about what it will be like (in theory) or how maybe you would feel. But to go in and see someone so completely sure for me was really very reassuring. (Michelle, Hospice nurse)

David and Charlotte (funeral directors) discussed the difference between supporting a tūroro who had whānau support and families who did not have support. They spoke about a person who used their agency to bring the whānau together to be involved with the assisted dying process and procedure as a way to heal the whānau. However, another tūroro felt they had to keep their assisted dying preference a secret. David and Charlotte said this made the experience very dislocated and the sense of separation increased the mamae (emotional) pain experienced by whānau who were not involved.

Claudina (social worker) recalled a patient who wished to hasten their death and had been assessed by an assisted dying attending medical practitioner. Although the kaumātua and her did not personally support assisted dying they were able to put their feelings aside to support the tūroro. Claudina reflected on the kaumātua’s role in the procedure and how his presence and acceptance of the procedure comforted her role in the assisted death as a health professional. He also comforted the bereaved whānau:

The kaumātua came and made contact with us because yeah, we just needed to be in on that. He felt we needed to be in on that so- and that was fine because I knew the kaumātua really well so that made it really comfortable for me to go into a situation like that. Yeah, just gave me a bit of strength because you know even the kaumātua doesn’t condone it [Assisted Dying]. So, we were kind of like holding each other up! We were there for one another to support, more so to be there for, that person. (Claudina, Social Worker)

Mere-Pere (hospice kaitakawaenga) reflected on what she learned during her role in supporting a tūroro leading up to his assisted death. She felt it was important to put aside her conscientious objector beliefs and center on the tūroro’s voice. She also mentioned the importance of whānau support for the tūroro: 

Only thing I, I’ve learned a lot with that experience about just honouring the voice you know honouring the voice… I’m not talking [about the] individual voice, ‘The voice’, the collective voice of the whānau. And that was really great learning for me.  And what an amazing whānau! Amazing. You know. What an amazing man. (Mere-Pere, Hospice kaitakawaenga)

Lynne (kai rongoā) witnessed another rongoā practitioner supporting a young Māori tūroro during her AD procedure. Lynne said the kuia discussed with the tūroro what the ronogā was for and how it would support her through her transition across the ārai. Lynne’s conversation with the kuia involved discussing how the AD clinician was able to support the tūroro’s wishes to hasten death (the woman no longer wanted to continue with the rongoā). The kai rongoā acknowledged how the two approaches of health care could support her end of life care:

She was Māori yeah; she was a young girl… it was the kuia that was there that said, ‘Oh babe, this is your rongoā that’s going to make it all go away’… I spoke to the kuia afterwards because, I didn’t realise it at the time, you know I [said to the kuia] can I bring some rongoā in and… she said ‘it’s alright babe’ she said. This [assisted dying] medication had been brought in for her to take.

And ah the medical staff were saying ‘you know, just when you’re ready, take it when you’re ready.’…The doctor is helping her to pass over because she doesn’t, she doesn’t want any more [treatment]- doesn’t want to take anymore… She had been on radiation treatment; she had done her full chemo treatment. She was like next to nothing… she was in a mess… she did take it like after, after ah I’d gone. She asked for the room to be cleared out and just her mum and her dad and her nanny [where there]. (Lynne, Kai rongoā)

Kaye (tohunga) discussed the importance of awhi in transitioning through the ārai:

Awhi is much bigger – it’s the aroha as well. It’s the aroha. Unconditional [aroha] during that time of transition; it’s aroha has to shift in and up a notch into unconditional love. By the living… And that’s what brings about the peace. (Kaye, Tohunga)

Kumarahou (rongoā practitioner) saw tikanga as a practical aid in the process of death and dying:

I remember being told ‘remember if a tikanga doesn’t make sense, you’ve probably got it wrong. Remember that we are a practical people, we intend to survive’. You know so we don’t put up with nonsense you know. And, and a lot of people… they have, have said to me… and I’ll say the same thing myself…, ‘when the time comes, I’m, I’m ready to go. I’ve done my thing.’ You know and, and, and that sort of, matter of fact thing. (Kumurahou, Rongoā practitioner)

Kaye (tohunga) discussed the importance of distinguishing the transition of wairua and mauri from the body:

[Deceased] they’re mauri, they’re life force, they’re energy. They’re not, they’re not attached to a tūpāpaku. Once a person has passed, then they are divinely mauri. [The wairua] has a body…the wairua melds into the mauri force…the energy of the wairua because it [wairua] is an energy; it’s not a tangible ah avatar… It’s energy but it’s, it’s not attached to a physical presence.

It’s not physical. It’s a different… I’m trying to explain the difference between… the wairua is able to be attached or within to dwell within the physical body. The mauri force is within, but it’s not attached to [the body]. Because nothing happens to it when the tinana and the wairua gets sick; the mauri force is constant. Because of it being a fractal of Source, it’s ever lasting.

So, the wairua goes down and up and stuff. Like well my wairua’s not feeling too good today and that’s because the tinana is not [feeling good]; it’s attached to the tinana. Whereas the mauri force is constant and ever lasting until eternity – it’s the fractal of the source. (Kaye, Tohunga)

Anticipating death: Supporting Tūroro to Say ‘Goodbye’

Jedi and Tuna (funeral directors) discussed a conversation between a māuiui mother and her daughter about the mother’s acceptance of her death in preparation for her assisted death:

[The kuia said to her daughter] ‘I’m going to be okay, I’m going to be with your brother, on the other side and we’re going to be alright… I’m looking forward to being there, to care for him’ you know yeah. (Tuna, Māori Funeral director)

After preparing for the assisted death, Les (assisted dying attending medical practitioner) discussed the importance of allowing the whānau time to say their goodbyes.

I always you know you give them time to talk to her whānau and- but sometimes they don’t know what to say. There was a minister there as well and he was accepting of it (part of, part of the whānau). And he, he talked to me about it and, and said that you know… (I didn’t see any questioning of her need to have it from him), but I was interested that he, he was attending. (Les, Assisted dying doctor)

Jedi (funeral director) said the person who has decided to have an assisted death often arranged everything so that their whānau did not have to worry about it while they were grieving. They often discussed their tangihanga preparations with the funeral directors before they died. This was often a positive experience as Jedi thought that pre-arranging tangihanga allowed the whānau to spend more quality time together instead of worrying about tangihanga preparations: 

[S]he made her- all her arrangements and then I supported the whānau… they didn’t have to worry about taking care of those things. So, they were able to spend that quality time in the moment, you know, with the grieving process. So, I thought that was awesome. (Jedi, Funeral director)

Nui (hospice nurse) described a conversation she had with a whānau about the āhua (character) of Tama and how he organised his whānau leading up to his death date. Nui highlights the importance of whānau having a support worker willing to prioritise whānaungatanga and kōrero with them during assisted dying services:

The whānau members said to me, prior to the day like maybe the day before [he died] Tama was saying, ‘so what’s actually going to happen, when I’m, when I’m dead like, and who’s going to be in the room? I don’t want everybody staring at me…this is, this is what I want to happen… I don’t want to be alone in a cooler by myself so let’s talk about that’, you know.

[A]nd [he was] really talking about that level of detail and I think that was Tama’s vulnerability and, and able to talk to ah his closest whānau ah about those things. (Nui, Hospice nurse)

Charlotte (funeral director) reflected on who was invited to be a part of the assisted dying procedure for a tūroro she supported:

So, he wanted his family, well he only had a daughter, but he wanted his friends there too…he also wanted myself and matua, our kaumatua to be there… (Charlotte, Funeral director)

Having the assisted dying date meant whānau could take time off work and prepare for the dying date, especially for those who had to come from overseas. Duncan (Palliative care doctor) commented:

… in terms of assisted deaths people do know when it will happen, where it will happen, how it will happen to some extent so they [family] can possibly take time off work… and they come back and we find that people can’t necessarily afford to take too much time off – their jobs might be at risk.

And ah so, in some ways, having an assisted death can, help people be there at the time [of dying] because sometimes some of the vigils that people hold might go on for weeks in some cases because some people are just amazingly strong and so that can be a big drain on, on everybody not just physically but financially…

And people can come back from overseas and stuff because sometimes ‘oh I… can come back either before or [after] the person dies or I can come back for their tangi (funeral), but I can’t do both and that’s, that’s a real you know economic reality and so. (Duncan, Palliative Care doctor)

Michelle (hospice nurse) explained how the assisted dying clinician came to the family’s home and took a very practical approach to the procedure. She thought the assisted dying clinician was calm and did not seem too rushed to begin the procedure. They were pragmatic in explaining the different medications and the assisted dying process:

But she [assisted dying attending medical practitioner] arrived and she had her bag of stuff, and it was very task orientated. She kind of came and introduced herself… I think she asked who the people were in the room…and but, task orientated but not rushed. She wasn’t rushed. It didn’t feel like she needed to be out of there or anything like that and she kind of came and talked through what she was going to do and what it would kind of look like…

In her little box of goodies, the medications were all prepared and pre-measured… but she talked through the medications and what they were…And then, yeah and then, put the line in. And then again, said ‘I’m going to go out and, and give you guys time to talk and then when you’re ready somebody can come out and get me.’…

Hine said, ‘I’m ready now – like I don’t want any more time.’ And sent me off to go and get the doctor so I brought the doctor back and she again explained, the medications, what it would kind of look like and explained that by the end of the, you know, third dose she would of you know, passed [over] and that it would probably… (gave them an estimated timeframe of how long it would all take). (Michelle, Hospice nurse)

Michelle (hospice nurse) explained the assisted dying consent process and setting up the medication before the assisted death:

And then they [assisted dying attending medical practitioner) asked like [Hine for] consent; they talked about consent and checked with Hine that she still wanted to go through with it and explained they were going to pop in an IV line, so they put in a line.

And then they kind of said to her ‘you’ve got some time now, to say your goodbyes and you know then I’ll come back and we’ll [carry on; and she kind of said ‘I, I, I just want to get things moving’ you know. (Michelle, Hospice nurse)

Duncan (palliative care doctor) reflected on the quickness of the assisted dying procedure which even he experienced as a shock. He could empathise with bereaved whānau at feeling shocked, especially for whānau who had not seen a loved one die before:

I have to say you know with the first couple of ones that I witnessed it was slightly shocking for me as a medical practitioner who has dealt with death and dying full time for, longer than [a decade] it was just like yeah it was a bit of a shock ‘oh, oh what just happened’ And that, that’s me as a palliative care doctor let alone… as a whānau member who’s never seen someone dying. It, it can be a bit of a shock so, it is very, very quick. (Duncan, Palliative care doctor)

Les (assisted dying attending medical practitioner) discussed the importance of giving time for the whānau to overcome feeling shocked after the assisted death – due to the quick procedure. Les thought that it was importance to support whānau.

Well, I sense there’s a need for me to leave for a short time… they’re telling people [love messages], it’s, touching the person whose [died]; it’s fine to touch them (put your hand [on them], you know and you can talk. Because sometimes there’s this silence…Yeah, I don’t know [if the family are] scared but they don’t- they sort of almost need to be given permission [to feel part of it] … yeah, maybe it’s scared yeah okay. (Les, Assisted dying attending medical practitioner)

Michelle (hospice nurse) also agreed that the assisted dying procedure was quick. She reflected on this experience as causing distress and shock for the whānau and was unlike a natural death. This was because the tūroro was alert and talking up until the time of her death:

Yeah, it’s [assisted dying’s] a very short timeframe. And from when we started to when Hine [tūroro] was not responsive, it’s maybe 30 seconds… (the midazolam is such high dose that it does just really put people to sleep) and she looked like she was sleeping.

And then, yeah then the family, once the third medication was given, the family became you know obviously quite distressed and were very upset and crying and giving her hugs and things like that… but then one of the sisters just looked at me and she said ‘is it, is she dead now’ because nobody had kind of said it out loud.

And then once I said ‘yes, she is dead, that’s when they really hit… One of the sisters had a panic attack. …Um dying can be quite slow and often there’s, you know, deep breaths and maybe fluctuating lucidity and you kind of ah prepare yourself, or you know it’s coming.

I don’t know it doesn’t make sense because you know an assisted death is coming too right you know that…But I wonder if you can’t, you can’t kind of connect the two because people are awake and talking to you and then they’re gone… I think you can support them but also be completely shocked by what you’ve just, just watched. (Michelle, Hospice nurse)

Appropriate Places and Spaces for Assisted Dying

Jedi and Tuna (funeral directors) reflected on collecting a tūpāpaku from a hospital ward after an assisted death. They discussed what they thought was an appropriate room in the hospital for an assisted death. Tuna thought rooms which were separated from populated areas and close to the chapel in the hospital ward were best for privacy for the bereaved whānau:

I actually think that that room was the best room for it. Because, because it’s away… it’s away from the ward. We have had to go and do removals on the ward, and we go in with our trolleys and we say ‘ah, would you like to go and close the doors?’

Whereas this [room where the person had the assisted death], it’s by the lifts … Yeah it, it’s I think it’s called the chapel, I think that’s what it’s called. That’s the better place. (Tuna, Funeral director)

Preparing the Room

Cultural liaison hospice staff and Māori nurses prepared the hospital room with adornments of taonga to prepare the space to suit the needs of a man at the end of life:

Particularly one of our Māori nurses, ah, she… really nurtured his [Tama’s] need to have perhaps, ah representations of taonga within his, his room which he and the whānau found really beneficial… One [taonga] in particular I think, was, manifested here [at hospice].

And it, (that taonga) was to do with whakapapa yeah. And so, I did some raranga (weaving) with one of the whānau and had kōrero while we were doing it. And that whānau member had been really distressed when they’d come in because they knew, I think, just the build up to the day.

And it was just so beautiful to have kōrero in that lovely rhythm of [raranga] and I actually wove a kupenga and I wove it around a paua shell… And, and I gave it as a koha to the whānau member and said you know ‘you could have this for Dad, or you may want to keep it – you know just follow the wairua.’

And then another whānau member joined us and, and it was really beautiful feeling, the wairua that was around us. Because we were drawing on visually, rhythmically, the kupu, the reo, the whānaungatanga; ah it was really beautiful. (Nui, Hospice nurse)

Nui (hospice nurse) reflected on the significance of whakawaatea (energy clearing rituals) and tikanga practices after death for the kaimahi, tūroro and whānau:

Five of us came together… we did two waiata and karakia and hugs. Really beautiful and actually I also did… even in the MDT, on his, on our patient sheets I did… designs like [painted tāniko] …without even thinking and I, I got a piece of pounamu that another staff member had collected from the beach here in [name of town].

And she had given me a little group of them and so I took one of those and gave it to Tama’s son… so you know linking pounamu, linking harakeke, linking paua, linking whakapapa, reo just waiata āe that coming together and that, that really helped so much that day. And then, I texted the whānau member and told them, ‘We have done karakia together and waiata for your rangatira. His room has been blessed to whakawātea.’ (Nui, Hospice nurse)

Funeral directors took time to kōrero with bereaved whānau about their experience. David (Funeral Director) recalled a conversation he had with a widowed husband regarding his wife’s choice to have an assisted death, but she died before the dying date:

I did have one Māori whānau that we- that I looked after and as we’re driving out to the, to the funeral her husband is from [name of island]. Yeah. And we’re driving out to the funeral it’s just him and I in the hearse. She was a young, [a] young mum and she’d had sort of ah late teenage, early 20-year-old children. And he just said, he said ‘today was going to be the day’.

And I said…’what do you mean?’ He said, ‘you know if, if she hadn’t of died before, she said she was booked in for the assisted death’, or she had booked in for assisted dying. This guy he’s matter of fact you know, black and white, black and white. I said, ‘oh’, I said ‘that’s, that’s a big thing to come to’. He said ‘yeah’, he said ‘she just got sick of having people have to change her nappy and the indignity around it she was in hospice care at that time’. (David, Funeral director)

Jedi and Tuna (funeral directors) recalled a conversation with a bereaved whānau member who had experienced an assisted dying procedure. Tuna reflected on how experiences of assisted dying are is different for each whānau. This whānau thought death was part of life’s journey for but not the final time they would see each other:

I spoke to the brother who I know, and he said, we had him, we had him out in the yard, and it was mean, it was mean. He just looked at us all and he said, ‘I’ll see you’ fellas later.’ You know. So, it, it’s different how things, things are for different people yeah. (Jedi, Funeral director)