Hinauri Phase 1

How Health Professionals and Support Workers Supported Tūroro and Whānau
Health professionals’ reflections on their role in Mana Motuhake and Use of the EoLC Act (2019)

Health Professionals’ Role in Supporting Mana Motuhake and Assisted Dying Decision Making

Brennan had spent time reflecting on his role as an assisted dying clinician. He thought his role was as a functionary; to judge a person’s eligibility and capacity to consent whilst upholding their mana motuhake:

I really see myself as a functionary; the whole point I have medical training and stuff (and I know what, what I’m doing); I’m qualified to assess to, to judge a person’s eligibility and capacity to consent. Aside from that, I’m a functionary for this person’s wish to take control over what life they have left.

I think the most important thing to me is that the person is getting the most quality out of the life they have left, however that looks… I don’t talk anyone out of it… it’s not my role. It’s just explaining and helping and reflecting sometimes. Often times lots of philosophical discussions [are] really, really good, I think. (Duncan, assisted dying attending medical practitioner)

David supported his patient’s choice in assisted death:

No, I felt very happy that she was making a positive choice. I think for most people it is a positive choice and it’s a huge choice for people to make but it’s a positive choice which I would always support, and I was very happy for her to you know, she was making that choice. (Duncan, Assisted dying attending medical practitioner)

Michelle (hospice nurse) reported what she thought was ‘quality of life’ for the tūroro and how using the EoL Act supported their independence:

I think for her [tūroro], her independence was really important, and she maintained that almost right to the end. And I think, for her she kind of had identified that this was when quality [of life] would be gone, when she lost that independence. That would be when she didn’t want to continue [living]. (Michelle, Hospice nurse)

Assisted Dying is Not a New Process

Kumarahou (rongoā practitioner) did not consider assisted dying was a new process of hastening death however, the context of which it belongs to as an assessment process is novel. Kumarahou gave examples of māuiui people choosing not to continue treatment for cancer or accepting to use morphine to ease the pain and suffering as other ways of hastening death:

Yeah, see the whole idea of euthanasia is not new. You know, it’s often, you’ll have for example, the doctor may say to this person… ‘your heart’s stuffed. Ah we can give you a heart transplant. You realise that in actual fact… there’s a very big chance that you won’t come out of it alive. Your choice’. [They say] ‘Yes, go ahead.’

[W]e have been faced with that choice so often. You know, so when they told me I had [name] cancer well I had a choice. Okay surgery or not?… Either way, had the option of, which way it’s going to end up you know. The, the whole difficulty is in actual fact I’m really moving forward with caution, to allow the whole idea to settle into the context of which it belongs. (Kumurahou, Rongoā practitioner)

Duncan (palliative care doctor) said a palliative care clinician’s responsibility is to make the patient feel heard and that their wishes are acknowledged:

I think it was, was important that she [[tūroro] felt heard. That she had made a request [for an assisted death] and it had been responded to. Even though they couldn’t give the full response because of how unwell she was… But we’re here to say that ‘okay, we, we acknowledge that… [so] ‘I’ve been heard, I’ve been heard by someone who actually wants to know about my suffering.’ Because it’s easy to, to dismiss people or [say]… ‘why don’t you just toughen up’ but well, it’s easy for you to say but you’re not in their shoes, you’re not feeling it. (Duncan, Palliative care doctor)

Eve (hospice palliative care doctor) reported how after a man was initially declined his application for an assisted death his health declined and then when he was reassessed his application was accepted. The man was able to have an assisted death at home with his whānau there for support. Eve thought that because he had been through the assisted dying application process before, it made it easier for him to be reassessed:

There was probably a good 12 months after that before he re-entered… the possibility of assisted dying. He actually in the end fell and broke [a bone] and wasn’t going to be operatively repaired. And he moved from hospital to home and had assisted dying at home with his whānau around… I think it was probably a good 15 months after that initial, you know consultation in here with [a broken bone], with the attending [medical] practitioner. But with the support of his whānau yeah. (Eve, Palliative care doctor)

Eve (palliative care doctor) reflected on one person’s journey where he started his assisted dying application without his whānau. Eve thought he was protecting his whānau; he was unsure whether he wanted this assisted dying option and did not want to upset his family while exploring and learning about assisted dying. Over time, he involved his whānau. Hospice palliative care staff were able to accommodate his whānau when he told them about his decision:

The first assessment, the attending medical practitioner was going to come in on site and see him here [at hospice]. But in further deeper conversation (and this conversation wasn’t had by me – this was had by one of my colleagues at the weekend), he sat down and really teased out you know what exactly he was looking for.

And, in the process of that he, he said actually, ‘I think I would like my whānau here for the initial assessment’. So, and one of his grandchildren is a [health professional]. So, you know he had, had a, you know, people that you know that, that may have been interested in this journey that he was taking, and he was then very comfortable for his whānau to come in and be part of that initial assessment.

And I think it was just sitting down and talking a lot more to him about you know… I’ve spoken to my colleague about what he said, and I’ve looked at you know what he’d written in the notes. And it was just exploring his[man’s] fears around involving the whānau really; just sort of sitting talking about that a lot more and him able to move past that point you know.

It’s about accepting that this is a, a treatment choice for some patients. And the whānau, you know, need to hear what those treatment choices are, you know. And also, just he wasn’t really fixated on it at that point in time. You know he wasn’t even really sure that it was something he was going to pursue. (Eve, Hospice palliative care doctor).

The man’s whānau told the palliative care doctor that they felt well informed after having attended the assisted dying assessment.

So, what they said to us after that initial meeting with the first [assisted dying medical practitioner], was that they felt well informed. That they understood the process, and I really feel that he very much understood he had a choice and that choice you know, was not set in concrete, it could change at any time, it could come and go. And it did come and go yeah. (Eve, Palliative care doctor)

Mere-Pere (hospice kaitakawaenga) explained her relationship with a tūroro who had wished to hasten his death. She said he had chosen to spend time in the hospice to give his whānau a break and to meet new people in the service; she supported him:

He came in a few times, yes, he did and loved it. And really, he, he came in because he wanted to give the whānau a break, but he was also really, really loved just having his time, not on his own, it was two, two-fold… Yeah, yeah and, and different people – meeting different people. So, I you know, would visit him in over in [name of hospice], yeah, he came in. (Mere-Pere, Hospice Kaitakawaenga)

Whanaungatanga (relationships and establishing connection)

Brennan, (assisted dying attending medical practitioner), reported the importance of establishing rapport in planning for end of life and assisted dying:

… of course, you, you can’t not do it without developing a rapport… Yeah, shouldn’t just sit down there and [act] like an accountant or something. (Brennan, Assisted dying medical practitioner)

David Brown reported how at his GP service he does not have a nurse and will therefore be more involved with his patients. He noted the importance of his role in whanaungatanga and being a support for his patients; however, he was aware of the restrictions of the EoL Act (2019) and would wait for whānau to ask about assisted dying when discussing end of life planning:

As I don’t have a nurse here, so it’s just me. It means I get far more involved with my patients because I’m doing everything, you know. I do all the [name] treatments, I’m talking to my patients and chatting to them and getting to know [them] whilst I’m doing those treatments. So, it’s, it’s a very different level of service that I provide which obviously people appreciate because it’s a personal service.

You know [patient’s name] had my phone number; she would message me and, so it was. It’s that commitment I had for all of my patients. And in that respect, bearing in mind there are restrictions on how the subject of end of life is brought up. So, legally that’s not my role to discuss it [assisted dying] or instigate the discussion.

But, for me I’m very open to [it] and obviously wait for the patient to bring that up, which [patient’s name] did. And she was very, very open and black and white about her wishes. But for me, it, it’s not to do with my beliefs and what I believe about the rights and wrongs of end of life or my spiritual or own personal beliefs are irrelevant to the individual sitting in front of me and I respect that person’s wishes. (David Brown, Rural GP)

Michelle (hospice nurse) thought that establishing rapport was mandatory when working with māuiui people to gain their trust:

I think she [tūroro] was a bit nervous about hospice maybe. But she also really worried that there were people that were sicker than her and so if we went to the home, she was taking somebody else’s time. Which was not true! She really needed our support as well but, I think it was just about building rapport.

So, after that I kept on visiting her kind of every second week because she needed [that]; symptomatically her pain wasn’t well controlled either and during that time she was seeing the [assisted dying doctors] and had her first and her second assessment and, and was approved, for assisted dying. (Michelle, Hospice doctor)

Nui (hospice nurse) commented on how a Māori cultural liaison staff member was supportive of a person’s end of life preparations through actioning whanaungatanga. Nui witnessed the whanaungatanga between the patient and the Māori cultural liaison staff member and how the transmission of knowledge, whakapapa and mana was supportive to the tūroro in the assisted dying assessment process:

I think after his assisted dying assessments, perhaps he’d had one and in between the next one he had cultural liaison support and a lot of whakapapa exchange. Which I think our Māori liaison said that his depth of knowledge about his whakapapa was really beautiful and he had taught our beautiful Māori liaison [person’s name], things about that whakapapa line. So, that was just so beautiful. (Nui, Hospice nurse)

Assisted Dying Doctors Facilitated Whānau Assisted Dying Meetings

Eve (palliative care doctor) reported a tūroro saying they were grateful their whānau were involved in their assessment process:

He’d been seen by a counsellor as well to talk about it [assisted dying] as well. And ah he wanted [to] have his first assessment here on site [hospice]. And initially, he thought he wanted to have it without the whānau involved… He was grateful that he had involved his whānau or grateful that we had sat and had that conversation about involving his whānau yeah… (Eve, Palliative care doctor)

David Brown reported on his involvement with his patients wish to hasten their death. He said initial conversations were between him and his patient which then progressed to inviting whānau into the conversation:

For me it was a matter of having that conversation with her [patient] here. Which is what we had. That was some months before she committed to it- it was just a discussion about [assisted dying] … the future and what her wishes would be.

And she frequently said she had ‘no fear of dying’ and it was just how she wanted to do it. And of course, at that point when we discussed it, that was an option that she brought up. That was going to be there if need be but, at that time we were still treating her and we were ever hopeful that treatment was helping her and extending her life in as positive a way as possible.

We then had, when she got iller, when she was at home not able to come, obviously it became more evident that she would want to be going down that path. So, we had another discussion with her at her home and her mum was there and was very supportive… And, and [patients name] made it clear she had, had that discussion with her whānau. So, then it was really a matter of me supporting her [with referral] and I haven’t gone through the qualifications to do the assisted dying. (David Brown, Rural G.P.)

Health Professionals Were Facilitators in Whānau Hui About Assisted Dying

Michelle (hospice nurse) discussed with the māuiui person their reason for wanting an assisted death. She became a facilitator during her whānau meeting to understand how her wants and needs at the end of life would be met, whilst prioritising safety and care at home:

Earlier on, when we first talked about her reasons for wanting assisted dying, she talked a lot about not being a burden, on her whānau. That was one of her main reasons for wanting assisted dying and we had a family meeting, and the family came round and they probably… (I’m a bit of a bully) made them talk about what they actually wanted, and it turned out you know the sisters were really prepared to care of her as things changed. And eventually, she was becoming quite weak and unsafe at home, so she did end up moving in with her sister and then remaining there permanently. (Michelle, Hospice nurse)

Health Professionals Offered Patients and Whānau Information About Assisted Dying

Moana (Hospital liaison co-ordinator) reported her role in supporting the whānau meant gathering assisted dying information for the whānau. She commented that the process is difficult to navigate due to the lack of information about assisted dying:

You know so it’s just understanding the system from the inside out that’s basically what I have … just making sure that you had all the information that you need…to each part of the process in that kōrero. Understanding the process of that whole, whole programme. Like it’s disjointed, pretty much like yeah, it’s just, there’s just not enough information. (Moana, Hospital liaison co-ordinator)

Harriet (hospice nurse) found it interesting having to navigate caring for her patients at end of life within a service that was considered by staff to be a conscientious objector of assisted dying; thus, hospice staff felt they could not offer in-depth information about assisted dying. Harriet took it upon herself to offer tūroro the Ministry of Health’s free phone number for assisted dying if patients asked her about it:

So, what I’ve found interesting when I came here the [EoLC] Act was fairly new. But hospice used those words ‘conscientious objectors’…So, it was just never talked about, never mentioned, from our side. And a few sprinklings of patients would mention it, bring it up. And so, when I came here, I found that everyone had a little card; so, if any patient brought it up you just… gave them the card – the 0800 number where they could get information from the Ministry of Health – the number for SKENZ. (Harriet, Hospice nurse)

Hospice Staff Supported Patients who Explored the Assisted Dying Option with and Without Whānau Present

Moana (Hospital liaison co-ordinator) discussed the importance of whānau who are able to understand the assisted dying assessment process. Their role is to hold the wishes for the māuiui person and have kōrero with the assisted dying clinicians about their wish to hasten death; this was a collective whānau process. However, if whānau required her support then she would step in:

[How I can help] understanding the [AD] system and knowing where to direct them… knowing what questions to ask when they’re in a space like with the consultant. Or making sure that they’ve got certain whānau members that are able to take care of certain things in that kōrero. The whānau were able to hold their own which is what you want whānau to do. But we’re there if they need anything – if they hit a snag in the process, then if they make contact, then I’ll make sure to find that information. (Moana, Hospital liaison co-ordinator)

Health Professionals Keep Tūroro Comfortable

Mere-Pere (hospice kai takawaenga) prioritised the comfort of the tūroro at end of life. She felt she had gained a good connection with the tūroro through shared humour. Mere-Pere said she initially felt surprised that he had chosen to have an assisted death on his birthday:

I was surprised and then I thought, ‘well why would I be surprised?’ Could they [whānau] not celebrate his birthday and his, his, his death on the same day? Why am I surprised by that? … every time I would go, because he had a sense of humour, he would say, time is ticking!’ You know! We’d have big laughs and I did say to him ‘if you need to use colloquial street language [swearing] feel free to do so’…because he would go to say a swear word and then hold back. Because I, I didn’t want him to feel restricted that he couldn’t just be himself… but he was such a gentleman and I said, ‘if you feel… you need to get it out Matua just go for it.’ (Mere-Pere, Hospice kaitakawaenga)

Chaplain’s Role in Supporting Tūroro Around Assisted Dying

Beryl (Chaplain) understood that even though assisted dying was not supported in the hospice service her role as a chaplain did not deter her from entering pastoral conversations around end of life even if this meant discussing assisted dying with tūroro and whānau.

As far as chaplaincy is concerned there is a very clear understanding that in hospital chaplaincy if we’re ever asked about the, the pros and cons of ah assisted dying, then we are required to refer the patient to, back to their GP. That doesn’t prevent us from entering into pastoral conversations with people if need be and that was the way in which I became familiar with some of the quandaries, some of the pitfall’s, some of the soul searching that always accompanies this kind of this kind of end of life. (Beryl, Chaplain)

Beryl (Chaplain) considered the reasons why a Māori man did not want to tell his whānau about his intended assisted death:

[T]he sister – philosophically totally opposed! Funnily enough, I think, the mother would have been more readily able to process what, how, when, where, and why than the sister. But that’s pure, personal opinion. It was just the interactions that I had… those subliminal signals that you get. (Beryl, Chaplain)

Assisted dying doctor’s felt supported with assisted dying processes

Brennan felt the SCENZ (assisted dying clinical team) supported his decision to work in the area of assisted dying:

Yeah, from the [assisted dying] service itself honestly they’re really good, they’re really supportive in my experience of wanting to, wanting the best for, for people like, they’ve, they work hard, like they’ll email me back in like 15, 20 minutes on a frigging Sunday like because that’s usually the only timeframe on the weekends I can see people in. So, I’m like driving out at like and you know at night on a Sunday or something and like it will be like I get back at 9.30 and [person’s name] or someone will email me back, yeah that’s cool and I’m like… [person’s name]’ do you ever stop? Do you turn your email off?’ (Brennan, Assisted dying attending medical practitioner)

Chaplain’s Role in Maintaining Confidentiality

Beryl (Chaplain) discussed the protocols of confidentiality for chaplains when someone has an assisted death. She also considered the impact that assisted dying had on herself and the whānau due to a lack of support because of confidentiality policies:

[We] carry this load in chaplaincy which is, which is bound by the burden of confidentiality, and we bring a lot of this home… I’m probably atypical… because that, that’s my area, my area of activity and it certainly impacts on, on the whānau, on the family just as much as it would on the person who is actually undertaking that [assisted dying] process. (Beryl, Chaplain)

Supporting Whanau to Change or Extend the Dying Date

Michelle (hospice nurse) mentioned how the tūroro she was caring for was able to complete a straightforward assisted dying assessment process and she was able to make changes to her dying date:

During that time, she [tūroro] was seeing the doctors and had her first and her second assessment and, and was approved, for assisted dying. And she booked her first date… And then, we got to the first date things were actually going quite well so she put the date off again and that happened a few times, she moved her date. (Michelle, hospice nurse)

Supporting Someone Declined Assisted Dying

Eve (palliative care doctor) discussed the importance of involving a multidisciplinary team member during assisted dying assessments. Her hospice team were able to support a māuiui (ill) person after they did not meet the criteria for an assisted death. She shared how they coped with the declined application:

He was alright with that [declined assessment]. He was alright… He talked to our nursing staff about that, not me personally. Ah as I say, it’s a, you know as you know hospice is an MDT [Multi-Disciplinary Team] thing and it’s whoever around and at the time you know…. And I think that points to the skill of the attending medical practitioner that she could walk him through why he wasn’t qualifying at the moment and… leave him feeling like he had been heard. Um you know, he’d been- you know, the distress he was feeling had been heard. That we [hospice] were going to continue to support him, walk alongside him. And that if the situation changed, she could come back. (Eve, Palliative care doctor)

Duncan discussed the importance of acknowledging the patients’ needs and experiences even though they may not meet the criteria for assisted dying:

There’s been other patients where, where it’s, the same thing has happened; ah ‘oh I don’t think you, you’re well enough to go through with this but we’ll, we’ll make the request anyway.’ And the [assisted dying] assessors came and they understood they said, ‘no, we don’t think she’s well enough either but it’s important that we, we go through everything as we would with anyone else because they want to feel that they’ve, they’ve asked for something which was not easy to ask for. And we’re talking about stuff, which is really, can be really hard for New Zealanders in general to talk about death and dying and assisted dying; but they have, been responded to. They have been acknowledged… their fears or their suffering has been acknowledged. (Duncan, Palliative care doctor)

Negative Experiences for Tūroro Choosing Assisted Dying Date

Claudina (social worker) recalled how one whānau did not agree with the choice of their relative’s assisted death. They retaliated with hurtful name calling. She thought that those who conscientiously objected to assisted dying could feel conflicted because of their religious beliefs:

And lots of stuff you know [family were] calling them ‘bastards’ and everything like that you know….And plus you know the belief that the Atua [Gods] will turn their back on them is you know- they’ll be just in a place of purgatory or whatever you call it in the Christian world, I don’t know. But [said their wairua] would never rest and, the ‘tūpuna would turn their backs’ and all that kind of stuff, yeah, yeah. (Claudina, Social worker)

Nui (hospice nurse) reported on the mana (power, status, prestige) of Tama in his decision to have an assisted death and involve his whānau in the assessment process. Nui commented on the grief she thought the whānau experienced due to the prospect of Tama’s imminent assisted dying and because of his life limiting illness:

[Tama] had real, mana regarding his decision. And what that meant to me is, right up until he left was left in the ambulance, he had expressed what he wanted. He had done the process; he had had ah kōrero with whānau. And they too seemed to want to honour his, his choice.

And, and I really think [his choice] that it was around the pain of the disease and the symptoms, that had made Tama decide, ‘I’m making a choice’. I think, ah, for a whānau… but, one in particular, their awareness of this about to happen gave them I think some additional emotional distress. But I think they recognised that they were grieving regarding Tama’s imminent death whether it was death through his choice of assisted dying or death through disease. (Nui, hospice nurse)

Kumarahou (rongoā practitioner) discussed how the wairua of the person knows when it is time to die. He reflected on the idea of life and death, and modern medicine prolonging this process. He considered how over time, elderly people greet death willingly:

Accepting death: [I]t’s a question of, of how do you look on death? You know, I keep [hearing] people say, ‘oh I’ve got terminal illness.’ And they say, ‘what’s yours called?’ It’s called ‘life’. You know that, that in actual fact life is a gift; it’s only given for a time, so it’s something to be celebrated and, and let’s not be too regretful that one day it will end.

You know one of the great tragedies of modern health is that all these people are trying to prolong life for the sake of prolonging life because, I think [there’s] a great fear of the unknown… But you know to the old people time and time again, I’ve seen them and they decide when they’re going to die, and then they just fade into death.

Example of no treatment: One very highly respected person who was diagnosed with cancer and with early stages, well you know [it] wasn’t, at the stage where it was sort of significantly affecting him. He knew that he was unwell. And he said ‘oh thank you, I’m ready to go now. I, I’ll have no treatment.’ And a lot of the family were very, very upset with him… he said ‘oh, no, no I know I’m going to die sooner or later so I, I, I’m happy to go now’.

Example of morphine: You know and, and, and the thing is and that’s why I say in actual fact like often you know, you’ve got suffering heavily; you know the choice is ‘do you accept morphine?’ And the doctor will say ‘ah, you realise if you start taking it this time, it’s going to shorten your life?’ And they ‘say, yes I realise that and please give it to me.’ You know, so we’ve been doing it [supporting people to die sooner] for an awful, awful long time you know. (Kumurahou, rongoā practitioner)