Kaitiakitanga Assisted Dying Pathway

Hinauri | Assisted Dying

Whānau experiences and perspectives of using Assisted Dying Services and engaging with assisted dying health professionals

Mana motuhake using End of Life Choice Act (2019)

Knowing about the End of Life Choice Act (2019)

Whānau found out about the End of Life Choice Act and how to access support from Assisted Dying Services through a range of different avenues:

  • Individuals who wanted an assisted death had followed the referendum:
    • People remembered voting for the End of Life Choice Act (2019)
  • Medical specialists, GPs, hospice staff provided assisted dying information:
    • Health professionals often referred people to the assisted dying service; some provided a card with the Assisted Dying Service’s Phone: 0800 223 852 and email: AssistedDying@health.govt.nz
  • News, media; tv documentaries, websites
    • Website and assisted dying roadshow
  • Personal research undertaken by person with terminal illness and whānau.
    • Internet searches for information about euthanasia (not everyone knew the term ‘assisted dying’).
  • Places of employment where whanau worked provided Inservice education.
    • Provided staff with Assisted Dying Service’s 0800 number.
  • Health professionals accessed information through tertiary education.
  • Learned about assisted dying during their studies and professional development training.

Health professionals provided assisted dying information

People who had a terminal illness and wanted an assisted death were often initiative-taking and asked about assisted dying information from a health professional or they found information via the internet’s search engines. They often spoke with a health professional before they discussed the idea with whānau they trusted to support them.

Some whānau reported health professionals were incredibly supportive of the terminally ill person or their whānau requesting information.

Manaia reflected on the support they received from a hospital doctor following her mother’s stroke:

And so, we turned up to this meeting about- to talk about next steps for Mum, and the doctor who had, admitted Mum (from ED) said before we start, ‘I need to tell you girls something, I need to tell you all something’. We’re like ‘what?’ And she said, ‘I met with [mothers name] this morning and um she told me that she just wants ‘to go to sleep.’ I’ve done the research, and I think that your mum is a candidate for assisted dying.’ (Manaia, daughter)

Similarly, Ruski recalled that their local hospice provided information to his wife about assisted dying:

The hauora people and the hospice people here in [name of rural town] sort of told her about it [assisted dying] and we spoke about it between us…. she actually ah, spoke to um, now someone from the, from the hospice at first…. they sent out ah an advocate around to interview her and um and then, they got hold of the, they organised a (assisted dying medical practitioner) doctor and there was another doctor, a female doctor that came and interviewed her. (Ruski, husband)

Te Whatu Ora/Ministry of Health 0800 number provided access to information and began the process of assisted dying assessment process. Whānau thought this part of the process was straight forward:

… she [doctor] went to Mum’s- to the hospital; spoke to Mum about it and said ‘do you still want this? Yeah?. Okay well I need to ring them but then you need to tell them what you want’. So [Manaia’s sister] made that phone call and then put Mum on the phone on… she was [on speaker phone], they put, went into a meeting room um. And then yeah ‘Mum said what she wanted [assisted death] and so that started the ball rolling literally then and there the next day. (Manaia, daughter)

When whānau asked about assisted dying while staying in hospice the doctor or nurse was able to offer the organisation number for them to contact for further information, but Tane used google:

Um I, I, um brought up about the subject of um, um… assisted dying yeah among hydration and other things that I felt were important but I, I, I addressed this… and asked, asked them like, ‘this assisted dying… we brought it in and I can’t find who to talk to and the [hospice] doctor told me the name [of assisted dying services]… but um yeah from that I, I did the Google and um and rung them. (Tane, son)

Sometimes health professionals introduced the concept of assisted dying to terminally ill people via an Advance Care Planning document. For example, Awhi said:

Oh yeah, well we did talk about it because the hospice people were like ‘can you please fill out this form? Can you get it; we’ve got no information.’ You know because, Puti [sister] was pretty spikey and told them to ‘fuck off’ all the time you know or ‘come back later.’ Yeah. But um, it was that end-of-life form [Advanced Care Planning] document she read. (Awhi, sister)

Linda’s mother asked her mother’s palliative care doctor who was also her attending medical practitioner about assisted dying– she was taken seriously and was given options and offered further information and the number for the AD doctor to begin the assessment process after being informed about AD. The whānau thought the Māori doctor handled the situation professionally and with mana:

Ah so she said to [name of GP] ‘I want to ask you about, what do I do, if I just want to go to sleep’ And he said, looked at me because he knew. And I’m looking like ‘oh holy shit’. And I just looked at him like ‘carry on [name of GP]’ and he looked at her and said ‘can you explain to me what you mean?’ And she said ‘I want to know what I can do if I just want to go to sleep?’ And he goes, and ‘what do you mean by go to sleep?’ And she said, ‘if I go to sleep and I don’t wake up again’.

And then so he, he explained the process and he printed out what was… online because ah, we explained she didn’t know how to use the internet and obviously ah, I didn’t want to be, ah advocating or being seen by anyone in the whānau or anyone, anyone that I’m pushing this on her. So this was for him to provide to her. Um. And so he said but he said that’s ah, he didn’t provide it. I asked him has anyone else in [name of rural town] taken up this opportunity? He indicated that he couldn’t really answer those types of questions um. So I rephrased the question and I said ‘is this an option in [name of rural town] that Mum could pursue for this to occur in [name of rural town] because the reason I’ve come home is for Mum to pass in [name of rural town] um she would like not to pass anywhere else, is this able to be facilitated in [name of rural town]?

And his answer was ‘I’m aware that it is but I, don’t actually facilitate that myself… there’s a service that and there’s a procedure and um so, here is the paperwork where you can look at that option.’ But he said ‘I’m happy to support any more questions you may have to, to be a connector for you in that space’. Yeah, yeah so I feel like yeah he, he did what he was meant to do. I don’t even know what the process is but I feel like he handled it really, really well.. .

So [assisted dying doctor] rang me, so [name of GP] put the contact through to [AD doctor]. He rang me and said ‘I’ve been given your number about this um, would you like to proceed?’ I said ‘Mum’s right here (her hearing wasn’t too bad); ‘Mum would you like to proceed, would you like this doctor to come and visit you at the flat, he can come?’ ‘Yes please’. So he came through one Sunday and had the first interview with Mum and it was beautiful and at that time he mentioned, because they just knocked it off you know they, they just bonded straightaway Mum was really, really open to it, very, very interested in it… Then you see another doctor. So there was a younger doctor who came. Ah that was a shorter visit but Mum loved him as well. (Linda, daughter)

The AD doctor made considerable efforts to make sure the ill person wanted to continue with the process. They also were aware that re-asking the question could be detrimental to the patients mana motuhake and the rapport established:

Then [name of AD doctor] we did an online [hui] one once um. Because what happened and he explained it and he always apologised that there’s a timeframe that- and because Mum was not getting any worse and he felt really embarrassed that he had to keep asking her because um, but he saw her and he said ‘Like ah do you still want to be part of the process? Have you thought about a date?’

… but then him and I would chat. Like so I would call him and he would say ‘where do you think she’s at?’ And I was like ‘nah, I don’t think so’ and he said… ‘I also don’t think so’ (Linda, daughter)

Tiaki discussed assisted dying with her GP and was able to download the information pack from Ministry of Health website to get further information:

Yeah, I raised it with my GP. He’s a new GP that I didn’t know. So I had a longish appointment with him to say, um, ‘this is an option and I will be coming to you and looking for that and are you comfortable with that?’ And he said ‘yes I’ve done it. I’ve downloaded the packages and stuff like that though’.

[I]t raises some interesting questions for me [looking at all the information on assisted dying]… I mean it’s reassuring I looked up, I looked up the drugs, the combinations. And how they maintain dignity you know which I thought was really lovely. And um, so I’ve looked at that kind of stuff but then how do you choose a day? How do you choose a time? How do you choose a place? I’m like, you know the whole idea of dying at home, kind of appeals but I don’t want to mess up the house for [husband], I don’t want him to be able to, not be able to be here because he feels he just has an overwhelming of memory of me dying here. You know. I don’t know how you choose that. (Tiaki, person with serious illness)

Whānau were able to begin the assisted dying assessment process while at hospice, making it accessible to discuss options:

H]e went and stayed there [hospice] for a week for respite… Ah which is so lovely. And they’re fantastic! Yeah, um so he was there at hospice for a week. Um and I had organised um the physician, the assisted um, death physician, [name of physician] yeah to come and have a chat to him because that’s what he wanted. Wanted to have a chat, wanted to find out the information from the actual doctor and, and I thought that’s what he just wanted, he just wanted to talk to her to find out all about it (Gracie Munro, daughter)

Whānau who had high health literacy due to working in healthcare themselves or having had experience in healthcare as patients or whānau caregivers found accessing information about AD easy:

It was very easy to find the information. We, I understood the criteria and how um, how very involved it was. (Gracie Munro, daughter)

At times when health professionals were unable to offer information due to policy safeguards whānau helped inform loved ones about assisted dying.

Those who wished to hasten death often enlisted the support of close whānau to find the information and share this among the broader whānau. Sometimes, whānau used extended whānau networks to find the right information, particularly if they knew someone in the whānau was connected with a health service:

And he [Dad], yeah, he, he said to me that he would like to um, ‘get more information about it.’ So, I printed off a lot of information about it um for him. And I said, ‘here you go; this is, this is the information about it and the criteria that you need um for this to happen (Gracie Munro, daughter)

Te Iringa discussed how she was able to download the information pack about the AD procedure to start gathering information to begin the AD application:

And she [Mum] said, ‘well I’ve had this discussion already with my GP.’ I say’ okay.’ So that’s when I went into the assisted dying site… And I started gathering a lot of information to try and get the process right in my head. Um quiet, quite to me I felt it was quite daunting because it was something that was new to me for one, but also, um, now I’m a, that’s how I operate. I’m a tick the box person, I work through processes really well and I need to have good understanding and knowledge of where and how to. So, I, I’d downloaded some information, I said ‘okay Mum this is what I’ve found, and this is what I believe you have to do to you know have this, this support available to you.’ (Te Iringa, daughter)

Mere recalled how her whānau wanted to learn more about assisted dying when her nephew became unwell and wanted to be assessed:

So yeah, we, we mulled over it. We ah, wanted to learn a bit more. Couple of my cousins jumped on the internet and pulled out some information. We went over to Pita’s [nephew who wanted an assisted death] just about every night to have a kai and try and talk some more. Um not to dissuade him; just to feel right about it. I think it was just so that we were all on this journey together. (Mere, aunty).

Health Professionals cannot start the assisted dying conversation (the gag rule)

Not all the whānau we interviewed knew about the EoLC Act’s (2019) safeguard that prevents health professionals from raising the subject of assisted dying with a terminally ill person unless that person raises it with them first. Ani, who is connected to her Māori communities commented:

A lot of them had no idea; like, they didn’t realise that you have to ask your doctor. The most basic one but we didn’t know that either. They always thought that the doctor would offer it to you. (Ani, sister)

Maddie also observed, “And because when you’re in that state you don’t, you don’t know what to ask so you go to the doctor thinking they’re going to tell you everything. I didn’t even know that you had to ask to find out.”

Recommendation/solutions: Policy safeguards prohibit access to information

Whānau felt that if the EoLC Act should be transparent and information should be accessible to make informed choices and that health and palliative care services should be able to provide all the information whānau need:

Ah no definitely not [transparent]. Because for something that we’ve brought in and introduced it was all of, sounded like a bit of a hidden, hidden secret you know. If we, if we’re going to bring something in well bring it in transparently you know! I find it very amazing that we can bring it up and it come up, come up with hospice logo um I, I haven’t looked at that for a long time um and then to find out that they’re against it… when I first tried to get the information they wouldn’t share where to get [it] – ‘no well we don’t know’. It was only the doctor… she let me know, ah let me know. (Tane, son)

Misconception about assisted dying and reflections about process

Not everyone knew who to talk to about the assisted death. Most Māori whānau did not realise there was an Assisted Dying Service they could approach; as Dobby pointed out most people would speak to their GP about a health matter, especially rural whānau:

[M]any whānau put a lot of their faith in the GP… that’s the only point of you know a contact.. in terms of the medical world and what’s available… Oh, particularly for rural people absolutely. That’s all they know. They don’t know about other you know they don’t know about other um organisations that might be able to provide that information, it’s just the GP. It’s medically related. It’s kind of a shame; I can understand why it’s there but, um, it limits I think whānau knowing about, about this service. (Dobby, sister)

Ella discussed misconception of AD process and reflect on after gaining information and going through the assessment process with the doctor they felt more comfortable with the procedure.

And I was telling her ‘Mum like, Mum you just don’t understand yeah while [grandma’s] saying this tomorrow she’s going to wake up and say can we go to the supermarket because I feel like ice cream um’. But then after going through and realising that, it is a really long process and it’s not going to happen as soon as you talk to the doctor about it, it makes you feel a lot better um. Because you think you instantly think as soon as you’ve spoken to the doctor, because as soon as you talk to the doctor about having a headache they give you a Panadol. So, you think as soon as you talk to the doctor about assisted dying you’re going to die the next day you know… I was miseducated, I didn’t know about that …. yeah now that I know, it makes you feel a bit more comfortable. (Ella, mokopuna)

Whānau were unsure about their GP’s responsibility in finding an assisted dying doctor. However, due to the ACT policies, this is not in the GP’s jurisdiction and assisted dying doctors are not easily accessible. Even though George’s GP was supportive of her having an AD but found it difficult to connect with assisted dying services:

Well it’s hard, it’s really hard to plan and my doctor’s finding it difficult and she said that there’s only one person in [place name] that she might be able to talk to um, and that’s not helpful she said because um, that’s only one person. And she’d like to talk to more than one person. And I thought it was her responsibility to find someone else to talk to and to find facts out for me as her patient but. Obviously not enough facts there to warrant all this happening. (George, person with serious illness)

Whānau received an information pack from online and after reading about assisted dying however, they were unaware that this did not start the process but was to inform them about assisted dying. They had to call the organisation back to begin the process. Tane thought this could have been a more straightforward process:

Oh the process, so after that I was um, yeah gives you all the information and everything but um, nothing, nothing there.to .. sign any forms and send back um. I’m like I sort of anticipated there would be. And so, yeah… having all, all this paperwork and everything um, that I gave to Dad and, and, Dad, dad was like, when I think it was like well really weren’t too interested. What’s in that paperwork because Dad’s already made his mind up that’s what he’s doing. What’s the next process? And I’m, and I’m going through all the paperwork and – nothing to sign… Well to give authority to go to the next step yeah, yeah. So then I um, I yeah so then I rung them back and say ‘what’s the, what’s the story you know?!’ Yeah, yeah that was the sort of pro, process. I think that they send the paper out and expect everyone to read it and um. And yeah to go over it and see if it’s for them or not. (Tane, son)

Whānau found the waiting 4-6 weeks for the procedure was a barrier to accessing the assisted dying service, as the procedure was months away. Steven said it was going to take “Yeah, 4 to 6 weeks and I thought- we thought it was just going to be today, talk to them tomorrow you know”. His son said this was important to the family “Because she’d [dying wife and mother] already planned the tangi, she’d already planned it out like.”

Not meeting the criteria (living longer than 6 months)

AD is not available to people who do not have a palliative condition that will likely end their life in six months. This means people who have dementia, a disability, mental health or those who are old or frail who want to die cannot use the Act. Losing independence and dignity is not enough of a reason to have an assisted death according to the EoLC Act legislation. The law is clear, people must have a serious illness that will lead to death within the next six months.

Hinemoa’s mother experienced being declined an assisted death because despite being old and frail she did not have a palliative condition. Sadly, she stopped eating and drinking and died two weeks later which had a huge impact on the whānau. Her grieving daughter Hinemoa said:

I want to help others so that they don’t see their parents starve to death. It’s not cool. Yeah. And then the last 3 days of her life she couldn’t drink. And the hospice put a needle in her and morphine; we were injecting morphine into her and then they put a pump. And um yeah, she just passed away. But, it was so hard for me and my kids and my mokos [grandchildren] to see – it wasn’t cool. It wasn’t cool. It was cruel. It was very, very cruel not just to Mum but to her whānau as well. Her mana was- there was none left. (Hinemoa, daughter)

Some attending medical practitioners often met whānau for their initial assessment/interview at the hospice. A doctor declared Gracie’s father did not meet criteria on his initial assessment due to his health not being at a state of “unbearable suffering” to which the whānau agreed. This instilled the protocols and safeguards of the EoLC Act:

Okay so um, when Dad said to [physicians name] ‘yes I would like you to start the process, I would like to um, apply for assisted dying’, and she said ‘okay. well I’ll go away now that I, we, we’ve had this talk and I’ll go away and I will get everything sorted’ you know um, administratively ‘and, and check with your physician, your um respiratory specialist’. Because I think ah, the specialist had to agree that Dad had less than 6 months to live. Um so she needed to have a chat to him about that. And even her assessment of Dad and how he was [on the day].

See dad was able to walk with his walker. So, he was sort of like still quite well, and actually while he was in hospice he was just fantastic, he, he was really good in there and they were like amazed that he was doing so well. And, and so her assessment of him was that he, he was well enough and… He didn’t need it and so she declined that first one… And I can see why she did that, yeah I do totally agree with how Dad was. He wasn’t ill, he wasn’t really… (Gracie Munro, daughter)

Due to the nature of Tama-D’s life limiting illness, he initially did not met the criteria for AD during the initial assessment, due to expecting to live past the 6 month criteria. Instead of refusing his application the attending medical practitioner placed a hold on the paperwork; this meant that Tama-D did not have to rewrite his entire application and would not have to go through the assessment process again. Tama-D could still have his wish to have an assisted death and not miss out due to paperwork:

We’d actually met with [AMP] before and, oh earlier on and he said to us ‘I don’t think, that Tama-D is, I think he’s got more than 6 months’. No [he did not refuse] he said ‘what we’ll do is we’ll fill out all the paperwork’ and he said ‘we’ll, just put it on hold…’and within probably a few weeks he [Tama-D] declined and so we contacted him again and he came out again. And, he actually had talked to our GP and the oncologist and, and they said ‘oh you know it, it’s going pretty quick now it’; he was going downhill pretty quick yeah. (May, partner)

Linda reported how the AD doctor discussed the different options of the assisted dying process to her mother to provide informed care and choice, but due to her mother’s hearing difficulties and the language being used it was difficult for her to comprehend the process of the procedure highlighting the need for support for people with disabilities:

I came home… from being out and [eldest daughter] said, ‘Mum, Nan came out of the shower and asked me ‘would I help her to end her life’. Because I had had to explain so [name of assisted dying attending medical practitioner] explained the process and had to explain to Mum because she said ‘can I just have it; can I just have it [lethal medication] here in a drawer?’ They, everyone thinks this right? They think you get a box of pills, and you pop one and then you pop another one and then yeah you sit in a chair and you go to sleep and he explained it and she couldn’t quite grasp it. It could have been the hearing was going in and out and she was being polite or just it was just too much for her brain to absorb. And this is a [elderly] woman, lots of these words and concepts were just way above um, where she was able to comprehend. (Linda, daughter)

Mere and her whānau felt uncomfortable during the assessment interviews and believed the attending medical practitioner did not want them present. The language used created additional challenges for whānau in understanding both the process and whether they were welcome in the room:

I think we were there for one of the meetings. They didn’t say we couldn’t be in the room they just made it really uncomfortable to be in the room. And you sort of felt like you were um invading this space that they’d created to have this discussion. But it was clear to me that he [nephew] wanted us there you know he, he wasn’t comfortable with being um well it wasn’t the comfort.
The kōrero was is, um, yeah I wouldn’t even I, there’s a way that people talk. Where they can leave people out of conversations because they use words that aren’t common in our everyday language. Very medically based words, academic stuff you know you’re sort of sitting there and even though the tone was nice and they’re trying to be just the language you know it was sort of, and I could see you know this is a bikie fella that’s been you know, here, there, everywhere didn’t get what they were saying. I was struggling to get what they’re saying…You know I wouldn’t come into a room and talk like that. (Mere, aunty)

The whānau felt the doctor did not adjust their language to support the whānau understanding of the process and it made them feel upset and unheard:

Some of our whānau said to the woman that came that um ‘you should break down what you’re talking about because some of those words are hard to understand’. And she said ‘well I’m a clinician’ was her response you know… [I] remember because all of my whānau were talking about it at tea that night about how they felt kind of brushed off. Um and that was only one incident but yeah it was enough to sort of put us a little bit on edge with that. (Mere, aunty)

Moerangi reported possible barrier to her brother-in-law following through with using the Act because of the terminology and feeling whakamā to discuss assisted dying with the doctor:

But um, when it, when it came down to actually requesting it, on a more official level, ah he’d, he, he didn’t feel he could go there which, which to our relief, was the case. But, but I did feel if, if it were um, if it were what he actually wanted, so I, I do go now on reflection I do wonder, um, had, had he, changed his mind again in that moment which is absolutely possible and I hope, and that’s what I hope happened um. Or did, did he feel that the process you know the, the process of having to directly ask for assisted dying in those terms wasn’t appropriate ah wasn’t he, he couldn’t manage. It wasn’t his languaging anyway um. (Moerangi, sister-in-law)

Gracie Munro felt the initial hui about assisted dying went well and was clear and informative. The whānau felt the doctor upheld the safety of their father and his mana motuhake to have an AD ensuring this was his choice:

… that went really well and she gave us all the information and um because I was there, [grandson’s name] was there, I think it was just the four of us yeah the four of us were there and um, to begin with I think [physician’s name] thought um that we were against it. We were totally against it. And then, and then she sort of quickly realised ‘oh you’re not against it’, because she was like ‘oh [fathers name] I just need to ask if you just want to talk to me um because this is between you and me, not anyone else?’ (Gracie Munro, daughter)

Recommendations, solutions about coercion, understanding of AD, informed consent:

Whānau felt that the doctor could have been clearer and more direct to ensure the person who had a terminal illness clearly understood the assisted dying process and procedure:

And the physicians have to make sure there’s no coercion as well and do, do you understand what’s happening and do you still want this sort of thing. Well that’s going to happen on the day as well so that’s where people need to, I think really think about their medications. They want to be pain free but they’ve got to be lucid. And it’s a lot, lot for whānau to think about and I sort of feel like, if I was a physician I’d be saying to people, ‘okay, um we need to make sure that you know everything that you’re ready to go, you know what you’re doing so that when the time comes, and you feel that you want to be assessed, you’ve got all the information you need because surely it’s up to you’. (Tiaki, person with serious illness)

Choosing the date the person wished to have the assisted dying procedure was straightforward for some people.

One participant in our study commented, “Oh no she wanted it as soon as possible yeah. She was, she was actually, telling them [Attending Medical Practitioner] to you know, ‘hurry up please’ you know. She wasn’t afraid to die.”

Knowing the date could help people plan ahead and prepare. Jackie-X commented:

Ah so the day [we got told] you know we started [preparing] afterwards; I was going ‘oh good, now I can put in for annual leave because I know when my brother’s going to die – first, the assisted death’. (Jackie-X, sister)

When the chosen dying date was not appropriate given the person was not suffering enough at the time of the appointment the whānau was concerned that their mother would have felt pressured to choose a date even though she was not in a state of suffering at the time of the appointment. The doctor was able to ask questions and agreed that the date of death was not appropriate at the time. On reflection Linda and her mother were able to understand that the process centered on her mother’s well-being and she was not obligated to choose a date just because they had an appointment:

[Mum] said to [name of assisting medical practitioner] and this is [month before death date], she said ‘I’ve been thinking date in [month] might be a good date’, she just came out with this. And I saw [doctor’s] reaction like, hmm, ‘I wasn’t thinking you were going to lead into that’. And then, I’m behind him. And I said ‘Mum can you please tell [doctor] the significance of [month]…’ And I’m standing behind him looking at him, like, she’s pick, picking this date just because of an anniversary like…Like she’s not thinking, I think.

And so we, we had a conversation later and he said ;no, I didn’t get any indication Mum actually is, is, in that space’. He said ‘from what I can see she’s not in that space, she seems very well, very chipper’. You know he, he obviously knew questions to ask around ‘what she’d been doing’ …

And so we had a conversation and I was like ‘Mum, are you ready to go yet?’ And she’d be like ‘oh, but, I just thought, I just thought because the doctors told me I would only have till [8 months earlier].’… I don’t know whether she thought ‘I just want to save the inconvenience to everyone and I just thought if I pick the same date as [anniversary] will make it special?’… or ‘I don’t want yous to have to suffer another day so we’ll just combine the sad day every year’. I don’t know where it came from. (Linda, daughter)

Clarification of assisted dying date and changing dates

When Linda’s mother was unclear about the date she chose the AD doctor required consent and confirmation of the right date before progressing with any paperwork:

He [doctor] said ‘there’s an issue with the date’. And I was like ‘why?’ And he said ‘she’s written [date] and there is no, [date]’; he said she’s written a date that doesn’t exist. And he said, ‘so I don’t know and she’s sitting there [and] she couldn’t quite hear him but he said ‘I don’t know then if Mum understands what she’s written’. And I said ‘look, her calendar’s here… let’s give her the calendar and let’s just um, explain’. And I said ‘[name AD doctor] she’s trying to be tidy, she’s trying to say, end of the month, she’s, she’s very much like that’. Um and so, they chose um, well she chose he, he showed her and he said ‘so this, and so she chose [date of intended death]’. And we were, somewhere in [month before]. (Linda, daughter)

The person with a terminal illness is able to contact their attending medical practitioner if any changes happen. For example, when Tama-D decided he was not ready to have AD the doctor without hesitation pushed back the organised death day to accommodate for the patient:

Ah because he was having some quite bad pain and he said to me, ‘contact Dr.[name of doctor]’, actually he used to call him Dr. Death! ‘Contact Dr. Death and tell him I want to do it next week.’ And then when we, and I, in my mind I thought hmm, I kind of didn’t think he was ready but I think he was just sick of being in pain. And then we got to that date and the night before he, he said ‘oh no, it’s not [time], no I think I’m going to stay here a bit longer’ and he put it off a week. And then the next week he was adamant ‘yeah that was going to happen the next day.’ (May, partner)

Tania discussed how her sister changed her assisted dying date four to five times:

About, I’d say 4, 4 or 5 times…because she would like ‘oh nah, push it forward, no I’m feeling good, oh look I’m, I want to be here for the baby so you can.’… So… you can also change your mind at any time. (Tania, sister)

Difficulties and burdens choosing the assisted dying date

Whānau reflected that it was not easy for the person who was choosing the date they would have the assisted death. Sometimes there were practical issues choosing the date someone wanted to die on:

Yeah but it wasn’t until [physicians name] was there and she said so [fathers name] you’ve decided on a date? And dad said, yes [physicians name], I’ve decided on [month]. And I’m thinking he’s going to say his birthday. And then he says, the [another date]. I’m like…that’s [sons name] birthday. He looked at me and said ‘too bad!’ And I’m like going ‘oh my god that’s going to crush him’… and then he said ‘oh’ and then he sort of sat back ‘oh, oh no okay. [He chose another date] and then [sister] pipes up my sister, and says ‘that’s my birthday!’ [So] we all had a bit of a giggle about that! And he said, ‘okay let’s make it my birthday!’ (Gracie Munro, daughter)

Person’s change of mind on ADP

It was not always easy choosing an assisted death. Even if people who had a terminal illness wanted it, they may not have chosen it because they believed it would negatively impact someone in their whānau.

Awhi’s sister may have considered using her mana motuhake to have an assisted death but she felt this option was not appropriate for her because her son had mental health problems; she believed he would not cope with her decision:

While she [sister] was in the hospice like I said, ‘oh um, um, [person’s name] partner’s chose, um, assisted dying.’ She was like ‘oh fuck really is he sick?’ I was like ‘yeah.’ And I go ‘but he’s like walking around normal as at the moment’… we talked about it and that’s when she went, ‘I couldn’t, I can’t… I so want to, but I couldn’t do it because’ um, her son… Well, she figured that he would know that she left him and that she hadn’t tried hard enough to stay here and that it wasn’t out of her control to leave… we’d talked; me and Puti we talked about it; I was like ‘you know that’s there aye?’ And she was like ‘oh fuck I do, but you know under different circumstances. (Awhi, sister)

Another participant in the Waerea study who had wanted to have an assisted death changed her mind and had a natural death because her son felt uncomfortable with her decision and asked her not to go ahead with it. George’s love for her son overrode her wish to have an assisted death and she chose a natural death.

Delay in decision-making and starting AD application

Whānau we interviewed shared with us that some family members had told their whānau they wanted an assisted death. However, because the person felt well they delayed actively starting the process by telling a health professional or contacting Assisted Dying Services to get the ball rolling. Unfortunately, their health declined very quickly and then it was either too late to be assessed to have an assisted death. Several people died before the assisted dying day and procedure.

Whānau manaaki - Counselling support - hospice

Some whānau were offered counselling about AD and were given enough information about assisted dying to understand the process and procedure:

[T]hey [hospice] offered counselling and all that at hospice; yes she [wife] actually ah, spoke to um, now someone from the, from the hospice at first. Then ah, and then ah they sent, they sent out ah an advocate around to interview her and um and then, they got hold of the, they organised a Doctor and there was another doctor, a female doctor that came and interviewed her.

Counselling support during assessment:

The assisted dying attending medical practitioner offered Gracie Munro’s whānau emotional support and also support to her father which allowed whānau to listen and understand each other – the doctor offered safeguards as a health professional and facilitated conversation between whānau:

So, she, she just real, I think it was through the hosp, I think it’s what dad had actually said to the hospice people he says oh I’ve got a doctor coming in to talk to me about assisted dying, and of course he realised that they weren’t really keen on it you know because that’s not their philosophy, their philosophy, philosophy was not ah for assisted dying. And um, and I think that’s when he realised and he says oh and I don’t think my daughter wants it to happen either. Or, or my family.

And, and that’s what he said to [physicians name] because he said to [physicians name] um, ‘oh yes my um, my family are not keen on this’. And then [grandsons name] piped up and says ‘who is not keen on this Granddad? Who is not keen on this?’ And he says ‘oh well Gracie for one thing’ and I’m like… ‘I’m okay with it Dad’, the reason why I’m asking you about it is because you keep saying that you want to do this because you’re a burden on us.

And that’s where the um, where he didn’t quite get it. That, ‘you can’t be using that [as a reason] you know because that’s not a great reason to, to be leaving this planet, this world’. And he’s, he was like ‘oh’ and, and I could see he was brushing that off again and then [physicians name] said, ‘[fathers name], I hear what Gracie is saying, do you hear her?’ And I think that’s for the first time he realised, ‘oh, so it’s I’m not a burden. Oh my god! It’s taken this long for you to realise it!’ (Gracie Munro, daughter)

Support after not meeting criteria

Gracie Munro’s father did not meet the assisted dying criteria in first assessment. This sent him into “deep depression”. The doctor offered support and organised a counsellor to support his mental health.

I think because, because he yeah it [AD] was something that he really wanted like, but then he sort of thought about it and thought ‘Oh, I should have acted sicker’ [during assessment] or something like that. And I’m like ‘No Dad.’ He said ‘okay’…. So after that so, 2 weeks he stopped eating; he was really grumpy… I think she was a psychologist from hospice came to visit him on the Thursday, and, and their meeting went really well, you know that was really good.

Gracie Munro’s father blamed himself for not passing the criteria for an assisted death and he stopped eating however, he benefited from seeing a psychologist referred by the local hospice:

I was in there for part of it um. And then I left, left them to it. Just so they could sort of you know have a chance [to talk] together. And um, and then he says ‘you know that was a good meeting’. I said ‘Dad you know with your eating [I says] it’s like you’re starving yourself.’ And he, he sort of looked at me he said ‘oh, oh okay’. And then that weekend he started eating. He just- it lifted you know his, everything just lifted and he said, ‘oh yeah, oh I’m really hungry!’ (Gracie Munro, daughter)

Carlos [Gracie Munro’s son] also commented on the positive impact a local hospice kai rongoā (who did massage) had “who would miri, do mirimiri on him [grandfather] which was fantastic; he loved that yeah, that was awesome” and a psychologist also helped his grandfather following being declined for an assisted death:

I remember you telling me [Mum] about that um yeah the psychologist came and um, how you just said ‘it was really good’ because I remember you on the phone saying how ‘over the moon you were’ that he was, he was like you know ‘in a good place’ and he um he, ‘he was really positive’ and, yeah ‘eating more’ and all that kind of thing and yeah. And it was a huge thing I think just, just chatting to someone. (Carlos, mokopuna)

Health professionals offered companionship at end of life and in palliative care

Linda’s mother used palliative care services before she decided to have and assisted death. Her mother was diagnosed with 3 months to live. The family found the Māori GP’s āhua was beautiful and he offered support at this time for the whānau:

I took Mum to a GP’s appointment one time we had a beautiful um, ah Māori tāne um doctor who’s from [name of rural town]. Mum knows his family and he’d returned home so she would always want him…and because she was in palliative care straightaway from the time of that diagnosis she was in palliative care, she was given 3 months. (Linda, daughter)

Whānau often provided support by attending two separate assisted dying assessments that were conducted by two assisted dying services’ practitioners on different days. The first meeting was with the attending medical practitioner, and the second meeting was with a different doctor who assessed the person on a different day to confirm the first doctor’s decision regarding eligibility. Whānau may also have attended a third assessment by a psychiatrist if a person had to have their mental capacity to choose an assisted death assessed. The terminally ill person had to be of sound mind and able to consent (verbally say “yes”) to an assisted death during the assessments. Whānau kaitiaki were usually present at these assessments.

After going through the process and being informed by the assisted dying medical practitioner Linda’s whānau felt they understood the process and their concerns were minimised:

I think sometimes people think because you’ve started the discussion, you’re going to do it next week or you’re going to do it hastily or um it’s not the case um. After going through the process with the two doctors there is, there’s a lot that happens to make sure you really understand. (Linda, daughter)

Once they were engaged with assisted dying services whānau felt informed and they understood the assessment process; they were aware of the protocols and safeguards the health professionals had to follow. The whānau were directed to the correct people to begin the assessment:

There was a social worker there and you know the nurse manager, different, there was 8 of us I think in the room and then [name of doctor] sort of talked us through what we’d have, she said ‘I can’t do anything further but this is who you ring.’ That was my job. So then I rang the [assisted dying service’s] place the next day and found out, about what is assisted dying and what happens and got talked through it all. I had to go to the hospital that afternoon and, talked to Mum about it and see… is this right and what she wants?

And then I had to ring the assisted dying lady [person’s name]. Um and, she put her on speaker and she had to get a verbal permission from Mum to go ahead and provide further information; and she said ‘basically this is the getting, this is doing paperwork, this is- nothing’s happening, you’re not committed to anything. This is just getting you in the system as a family making an enquiry but you’re the family, you’re the person and it’s about you.’

So we were lucky that Mum could speak. So she asked her a couple of questions and Mum could say you know ‘yes, no’, you know sort of very slurry but understandable enough. And then it kind of went from there I guess um quickly and slowly. . . so the first doctor, so we got everything in the system with the um assisted dying people. And then they made um a, appointment I guess by phone for the first doctor to ring me. So that was one of our local doctors here. Um he rang me at work and went through it all because by then I’m down as Mum’s facilitator; I don’t know whatever they call me. I was Mum’s contact person because Mum was verbal but you really had to talk to her in person.

So he went through a whole process with me about what happens and was very clear about how it all happens. And then um, came to meet us at the hospital just a day or two later….

We had booked a room, took Mum in there and we were all there, us, us siblings (not all our partners and people) and [mothers partners name], and he [assisted dying medical practitioner] went through it all with Mum and said, ‘I have to fill out this paperwork and then a second doctor is going to need to come and meet you and have pretty much this exact same meeting and that doctor has to then also approve of my paperwork and submit his own or her own paperwork’. (Huia, daughter)

Ella (mokopuna) commented that knowing the timing of her grandmother’s assisted death made the process more difficult for her:

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

And I was like, oh hang on a minute like I’ve been doing this for like 6 months and then you want to come here and tell me it’s end game. . . . you know like although [nana] didn’t, she always push, pushed that boundary of, what a granddaughter should be doing like I mean I was shopping with her for her coffins and things like that but, she did know that was past the point of what a granddaughter should be doing, talking to a doctor about assisted dying um. So, I knew that Mum hadn’t pushed the decision on her. (Ella, mokopuna)

The assisted dying medical practitioner explained to Linda’s mother and the whānau that the process of AD after assessment is not going to happen ‘in a days’ time. He outlined the timeframe allowing whānau to prepare the space, time and people involved. The whānau thought this offered time for them to prepare themselves for the procedure:

[S]o, he explained that it takes about a week from when you, she’d make the decision for the medication to come from where it comes and for him to do his process and then to come to her to do it in [name of rural town] and also he had to book the hospital room for us the hospital was willing to accommodate that for us and they had a special space. So, um. So that was one of the things to keep reminding her that ‘Mum you have to allow [name of AD doctors] a week, you can’t just say tomorrow’s the day.’ So we were on a video conference once and she said and it was like, [month before death date].

The assisted dying medical practitioner (AMP) would check on Linda’s mother and her whānau; they told the whānau when they would begin processing the assisted dying paperwork and when the process would commence, based on Linda’s mother’s state of decline:

[S]o we got to about [two months prior]. And [name AMP doctor] rang me and he said ‘oh we’d have to start the process’ and I was like ‘what does that involve?’ And then he said ‘no, don’t worry it’s just paperwork, but how is Mum going?’ And I was like oh, she’s pretty good. Then she had some- it [pain] started to get quite bad in [month before date] and he came. And she wrote down on a piece of paper while they were chatting she just picked up [pen]; she always had a notepad because of her hearing and we used whiteboards and things. She picked up a piece of paper, she wrote something down and she handed it to him. And I was in the room because I’d become the deaf translator somehow. And um he looked at me. And I said ‘what has she written?’ And he said ‘she’s written a date’. And I said ‘okay, I’m going to leave yous alone’, and I went in the room and I cried. (Linda, daughter)

Ruski and his whānau felt supported by the assisted dying medical practitioners – he reflected on their āhua and knowledge about assisted dying and how they took the time with his wife and whānau to make sure they understood. They answered questions they may have had:

Really nice people and they really told us, we sat here for over an hour with both doctors. You know they didn’t come at the same time, different days. But yeah we spent at least an hour with them and they just explained everything and Dr [name] was really good. Even the whānau met him that day and they were all impressed with him. (Ruski, husband)

Assisted dying doctors pointed out to the person with a serious illness and their whānau that they may experience discrimination from people who did not support the EoLC Act. Whānau found this helpful:

It was very interesting, that, um the 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’. (Manaia, daughter)

Well-informed and clear understanding of the process and procedure

Tania said the attending medical practitioners made the criteria and safeguards very clear:

Oh no they were very clear and they made it very clear, you couldn’t be more clear. So I think that’s why it was so painful because it was very clear, each step, they will first give you this [first medication] that will make this happen and the second one will be this will make that happen and then the third one will be this.

Whānau felt supported by the AD doctor who initially declined their father, then checked-in and saw his health decline and was able to follow through with protocol leading to two assessments and him meeting criteria:

And then, um, [physicians name] rang me three weeks after she declined him [Dad] she said ‘look Munro, I’m going to go away, for a couple of weeks, but when I come back, I’ll give you a call to see how your dad is doing’. And I, I mentioned that to Dad I said ‘Dad, do you want [physicians name] to call back?’ He said ‘yes, yes I want [physicians name] to call back’. I said ‘okay that’s fine; so she um, when she did call back, um she said ‘how’s he doing?’ And I said ‘not good… he’s, he’s on oxygen full time now. And he’s lost a lot of weight.’
And she said ‘I’ll come and see him. If he wants me to?’… and he agreed for [physicians name] to come and see him. And she was there for about 10 minutes I think and she said ‘oh [fathers name], I’m, I’m going to um, agree to your assisted dying… you know it’s just been in such a short amount of time since that first ah visit’ with her. And she said ‘that was, that’s just so incredible you know from what you were before, you were quite a robust man! To now you’re [not well] yeah’. (Gracie Munro, daughter)

During their assisted dying assessment people were asked how they wanted the lethal medication administered. Most people chose to have the medication administered by the attending medical practitioner. This involved a high level of trust in the service and the medically trained practitioner. Linda recalled her mother trusted the attending medical practitioner so much it helped her choose him to administer the lethal medication:

[Y]ou know they [Mum and assisted dying medical practitioner] quickly built a trust and um, so, that brought me to why Mum chose the intravenous option, okay.” (Linda, daughter)

Whānau appreciated it when the assisted dying medical practitioner developed a good rapport with the person who was having the assisted death and the person could uphold their mana in the way they wanted to:

Um, um so him and Mum really, really bonded and, 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. She didn’t, yeah. She knew that she wanted to uphold her mana. (Linda, daughter)

Attitudes and actions of staff and conscientious objection

Several people we interviewed in the Waerea study spoke about the negative comments the person who wanted an assisted death received from health professionals. Tane reflected on his dissatisfaction and views when a hospital doctor negatively commented on his father’s wish to have an assisted death:

And it’s been brought in [End of Life Choice Act, 2019] and um they [health professionals] shouldn’t be advocating for, for it, or against it. They, they are professionals and should be sitting in um middle ground as everybody else has, has to be. That, that’s what it is. We don’t have any, any choice um as professionals; they shouldn’t be giving ah um, their, their personal views and, and the, the, the public health system’s personal views. (Tane, son)

Tiaki who had a serious illness commented that she received pushback from her doctor when she said she would seek an assisted death when her illness progressed. This had a huge impact on Tiaki who said her trust in her doctor decreased:

[T]hat is one of the first things I said to my oncologist [I wanted an assisted death] um and she immediately said ‘well I won’t be helping with that, that’s a conflict of interest’. In the moment it was a really silencing thing for her to say – that she didn’t explore it. She was horrified I think. I think I basically withdrew from her following her um, kind of statement. That for her, it was a conflict of interest to engage with me about how I was going to die. (Tiaki, person with terminal illness)

Linda reflected on her experience feeling as though a health professional did not support her mother’s choice to have an assisted death:

[B]ut he [GP] was very professional in that I’m connecting Mum to what she wanted [AD] but I didn’t get the vibe that he was, um [okay with AD]. I just stayed in my lane [thinking] ‘this is not your choice. This is not my choice. I’m not endorsing this [AD]. But I’m advocating for my mother’s right to her choice to live her life the way she wants.

Because as far as I’m concerned… you’re not making that choice in death, you’re making that choice in life – that is her freedom, her right to have that choice.” (Linda, daughter)

Manaia commented that it was not always easy supporting their mother to have an assisted death because they were aware there were health professionals who may not have approved of her mother’s decision:

You know like every time we, had a meeting we went into a meeting room, with Mum… and then Mum commented, she told us at that time that um, one of the nurses had said to her ‘you’re having a lot of meetings?’ And Mum said to the nurse ‘don’t be so nosey’. So, you know she- we couldn’t speak of it in her room in case one of the nurses was opposed, or you know- so we didn’t. Or we talked very quietly. (Manaia, daughter)

Moerangi discussed concerns about the hospice and staff causing barriers for whānau seeking the service:

I think because of the fear around um, it being conflated for the organisation condoning, condoning and supporting assisted dying. And if any of our, our hospice staff were present, um, that that in turn says that we, we support the Act (Moerangi, sister in law)

Several whānau had negative experiences from health professionals who had negative perceptions of assisted dying that influenced how they interacted with whānau. May experienced a lack of support from a hospice nurse who made comments to try and change her partner’s mind about AD:

It was just this one particular nurse and, and a few comments she made to me when I’d walk her out to the car. She’d say ‘we’ll work on him;, things like that hmm.. Which I did put a complaint in actually to hospice about it. Because it was yeah, she said ‘we’ll work on him he won’t, he won’t do it, we’ll work on him’. And I was just like ‘oh?’ (May, partner)

Issues advocating for loved one but hampered by EoLC Act’s policy and safeguards:

Whānau are in an uncomfortable position as they have to manage navigating negative attitudes about assisted dying from clinicians when seeking support for a family member’s assessment:

How whānau can manage ah can manage the perception from clinicians, where if we have to go in and advocate for our loved one that this is what they want? How we can manage the perception that we may be, a coercing whānau um that we may be um, and I’ve, I’ve you know I’ve had, had this in my [health] professional role I’ve had um, families say that they ‘my mum has, my mum has told me that she wants to die and she wants this and that. But she wants me to ask.’ And as we know under the legislation that, that can’t, can’t um start any, any um, any of the process officially. (Moerangi, sister in law)

In terms of assisted dying giving people control, Tiaki pointed out that health professionals are the ones that really have control over who gets to have an assisted death and thought this was an issue with the legislation:

And then at the subsequent appointment (where I think she’d had time to reflect on what she said), she said ‘when the time’s right I can refer you to someone’. So, I don’t know how she was going to decide when the time was right. And one of the things I struggle with in the legislation, is the idea of suffering. Who gets to define what that suffering means and I get the strong sense that the oncologist is setting herself up to be the person who defines when my suffering becomes unbearable. (Tiaki, person with serious illness)

Recommendations and solutions: More support from health professionals to help people make decisions about assisted dying

Whānau felt as though there was not enough support from health professionals to support making decisions about assisted dying.
Tracy (mother) and Sarah (sister) discussed their experiences about her daughter wanting an assisted death but could not find health professionals to talk to:

Tracy: [There should have been more support from health professionals for] the assisted dying yeah, but and, and just supporting her [terminally ill daughter] with that and so that she wasn’t getting all panicked and stuff. And that there was none, none of that even when they knew that’s the path [assisted dying] she wanted to go down. They could have helped-
Sarah: Supported her, supported her a bit more. See [name of my deceased sister] was a person that um, she was very certain of things. She knew what she was doing. And it came to the, that, that part at the end there when all the uncertainty was there and she, she had no answers. She couldn’t get the help that she wanted or, or somebody to come in and just talk, talk to her you know (Tracy, mother & Sarah, sister)

People who experienced discrimination felt doctors in hospitals discussing conscientious objection was unprofessional and unethical:

So, there was two doctors and a nurse, I think a trainee doctor and a nurse and the um doctor was like well um- we’re totally, we’re against um assisted dying, ‘we don’t, we don’t, we don’t support it, at all’. And um, very, very direct and so I, I’ve let him know, well um…I said ‘well that’s, that’s your opinion mate you know you can keep your [opinion]; you don’t have to share your opinions’. I was a bit, bit shocked I thought it was very, very unprofessional.
And it’s [EoLC Act’s] been brought in and um they shouldn’t be advocating for, for it, or against it. They, they are professionals and should be sitting in um, middle ground as everybody else has, has to be. That, that’s what it is. We don’t have any, any choice um as professionals they shouldn’t be giving ah um, their, their personal views and, and the, the, the public health systems personal views. (Tane, son)

George was enrolled with her palliative care team and asked for more information about assisted dying but was told to discuss this with her GP as this was not aligned with their policy and philosophy. She felt this was detrimental to the experience of end of life care if hospice cannot support this:

They were very lovely about it. The lead said that um, ‘what the hospice and what the palliative care is about and that they promote you know good living, healthy living’. So if I was wanting um assisted death then I must go to my GP and the GP to look for someone to help me….I think it’s a cop out in one sense because, that’s your first connection to passing over and then they have this response is oh go down another track to, bring in those people…Quite divided I think. (George, person with serious illness)

Tania’s sister had to have three assessments instead of two assessments due to her first AD doctor deciding they were unfit to continue with the assisted death due to the emotional toll it took on them:

Three [assessments were needed] because the doctor, it had to be done again because the first doctor couldn’t do it because he apparently got too affected by it… Yeah he pulled out of doing it. Yeah. (Tania, sister)

The concern for Tania and her sister was the good whanaungatanga that was formed with the second assisted dying doctor who also ended up being away during the time Tania’s sister Rose was to have the procedure. Thus she had to seek a third doctor whom was not so focused on rapport building as the other two doctors had been:

He couldn’t do it. Because he had gone away. Or something. I can’t remember why he couldn’t do it. So the first doctor she really had a good rapport with, she absolutely loved him. The second doctor he was just as wonderful um and she felt a connection with him because they were both [great]; every doctor that turned up were absolutely very, very compassionate and caring and then the third one she got was an intensivist. Um. Not as I wouldn’t say she was as, as, gentle as the other two. She was little bit more pragmatic. I think. (Tania, sister)

In the early stages of the End of Life Choice Act’s implementation not all health professionals were aware of the process for referring their patients to the Assisted Dying Services and this caused delays and distress. Despite one woman asking her GP to begin the process to have an assessment this was delayed.

Te Iringa was very upset that it took so long for her mother to be assessed due to her GP not being educated in AD Act and not following up with the Ministry of Health quickly enough. By the time the assisted dying medical practitioner came to do the assessment it was too late, and she was deemed incompetent to consent:

I got a phone call from Ministry of Health. I got a phone call from ah the, um, the second GP or the second medical professional that was coming in to arrange a time to come and see Mum. I said to them over the phone I said, ’look, happy for you to come in but I think it’s too late. Mum’s, Mum is you know, [dying]. And mum was going through so much pain that we had to put her [on] morphine.

At that time mum was too late, she was incapacitated to make- she was incompetent to make that decision and even talk. But they still came in and did the assessment… and it was 2 day before she passed… Yeah they deemed her incompetent. Yeah. Um. And I knew that before they even did the assessment. I said ‘look, it’s probably a waste of time but you do what you have to do.’… the last words I said to my mum, um, and that was after that assessment had taken place, I was really upset, I cried and cried and cried. I sat there with Mum and I just said ‘Sorry Mum, I’m so sorry. But this is not going to happen.’ (Te Iringa, daughter)

Some whānau had to initiate their own applications due to doctors not being educated in assisted dying, causing barriers to access and delaying assessment and process.

Huia pointed out that in some areas there are not many assisted dying practitioners, “There aren’t a lot of doctors in this town that are part of the service so there is sometimes a delay in availability”.

The end of life journey is often challenging and assisted dying adds another layer of complexity. Tane said there is a need for more support across the last phase of life as not all whānau know about palliative care:

Need more professional support: We’re not born caregivers and you can’t- it’s not something you can fake your way through. And when you’re doing it, is um a lot different and people it’s you! Professionals are professionals for a reason. (Tane, son)

Maddie said her whānau needed more support from well informed health professionals to help their family member when she wanted an assisted death:

Just doctors, kind of not going that one step further and helping. Or referring her to someone that could help. Those last three months where she went into a full panic and going ringing people in [name of state], in [name of another country], looking at flights to go to [name of country]. She was trying to do anything to live longer… To just live longer (Maddie, sister)

Recommendation and solutions: Need for case workers to support assisted dying applications

As her mother’s kaitiaki it was Te Iringa’s cultural responsibility to help her mother fulfil her mana motuhake to have an assisted death however, due to a lack of knowledge from health professionals this task was obstructed. She felt she lost precious time being with her mother before she died because of this:

It was, it was a huge responsibility. You know the most valuable lesson I learned out of that is that I shouldn’t of been that person…It should have been somebody outside of our immediate whānau…Well it robbed me of time with my Mum. Yeah. (Te Iringa, daughter)

Whānau discussed the need for a liaison person to support the person with serious illness during the assisted dying assessment process; this was not necessarily a whānau member:

Yeah just, somebody I guess once you choose the end of life thing, dying thing um, somebody to assist you through it and talk to about everything… Without having to, because she [ill daughter] wouldn’t want to talk to us about these things because she knows that it will break our hearts so. Yeah a non-family member yeah.. (Tracy, mother)

And I think just being crystal clear about how everything works um. And just having someone that they can talk to about their own concerns. (Maddie, daughter)

Whānau felt alone when they need to uphold the wishes of their loved person. The secrecy surrounding assisted dying meant they had to complete the assisted dying application alone and walk the pathway alone:

Well it makes you feel alone. You know. Yeah it makes you-, because the, you know the, the people actually doing assisted dying um, you know they get [to] fly in, fly out. ‘Here’s the paperwork, do an assessment, talk [to] a person – they come down’. They’re not, they’re not a supportive thing. And, and you know when it, when it does, become like, you know [for] Dad – the biggest fucking thing going on in the world, assisted dying, assisted dying [and] you’re the only one fucking dealing with it… it becomes apparent pretty quick, well it doesn’t seem that fucking normal really, the assisted dying… And it has you really, really questioning it. (Tane, son)