Hinauri Phase 1

Recommendations for Improving Access to Assisted Dying Information

Creating in-person Wānanga Within the Community

Gypsy (hospice, kaitakawaenga) thought having in-person wānanga within the community was important to increase conversations about assisted dying; this would support people accessing assisted dying information:

Yeah, absolutely because it’s that kanohi-ki-te-kanohi and that’s what we want is, ‘I want to see you, I want to hear you, we breathe the same air, we share breath.’
You know it’s all that stuff because we know that we are feeling people. (Gypsy, hospice kaitakawaenga)

Michelle (hospice nurse) recommended that whānau should talk to each other about assisted dying and to discuss each other’s feelings about it. She also suggested that whānau could be involved in the assisted dying assessments and they could ask questions to gain more understanding about assisted dying:

To just to talk to each other. Just really talk to each other. Try and see it from each other’s perspectives [at] whānau meetings, with a health professional sometimes. Like you know if they’re, if they’re particularly under hospice, like if you’ve got a community nurse that knows you well. Invite her along because some of the concerns that are really you know- a lot of the questions are, ‘oh is she going to be gasping for breath or does it hurt’…

[L]ike these are the real fears that they don’t get to ask until the day of… and by then you’re terrified and we could have had this conversation. It’s [assisted death] actually it’s really peaceful it’s not, it’s not traumatic it, it’s, I guess it is traumatic [emotionally for whānau] no but it’s peaceful it’s not [traumatic for the person having it. (Michelle, Hospice nurse)

Moana (hospital liaison coordinator) had seen a lot of raru between whānau due to differing perspectives and beliefs about assisted dying. Moana thought that a whānau wananga (without the person seeking the assisted death being present) would be the best way to support whānau understanding. Whānau could work through their emotions and beliefs before they placed their opinions onto the māuiui person. Moana thought this would centre the māuiui in their choice without being obstructed by the mamae of others:

A wananga, basically conversation…and always taking the kōrero back to the person. They’re the one in this state. They’re the one experiencing you know- their needs are different to the whānau needs so everyone’s at different areas of, of the journey. I suppose providing more resources for, for the whānau that may be going through different things at different times whatever, that is to help them get to a point that it’s actually about the person [so resources for certain parts of the process]. Because they’re the one that’s, that’s suffering physically and everything else, and, and, and the whānau are too but in another way. So, it’s acknowledging both you know ah everyone’s feelings and the stuff that comes with that. (Moana, Hospital liaison coordination)

Jedi and Tuna (funeral directors) discussed their role in planning a funeral before the assisted death with the tūroro and their whānau. Tuna reported a discussion with the whānau about them being ‘informed enough about assisted dying’. She thought the whānau lacked support regarding assisted dying options and they appeared quite stressed:

I don’t think he was fully informed, I think. And he, he’s stressed and he, this chap that I spoke to yesterday, he is stressed. He- I don’t think he’s got a lot of support, but he’s got a lot of things going on as well. So, I’m not sure, if, if he was given the accurate information or you know enough, enough information I should say, to, to help him, help him go through this part of it. (Tuna, Funeral director)

Jedi and Tuna (funeral directors) recalled the person who chose an assisted death was very private about it. Jedi was unsure whether this was due to them having a sense of shame about it or because they were a private person. Jedi acknowledge that their funeral service did not want to impose on the person’s decision:

I do remember feeling the awkwardness from particularly from [tūroro’s name] you know. I guess you know [assisted dying] it’s new… maybe there were feelings from her of shame and then the more people she’s seeing you know it’s like, I don’t know… it felt like secrecy but I kind of you know felt- I didn’t really want to- I don’t know even with myself I felt like, like should I be here? You know. Because I could feel that energy of wanting to keep things really private and, and, and, and I didn’t want to impose. (Jedi, Funeral director)

Kaye (tohunga) suggested the need for whānau to be educated to enable them to support the māuiui person’s decision to have an assisted death:

The person who’s made the decision… will know the necessary people that mean the most to them (who needs to know) to be part of the team to support… And anybody outside of that you have to have protocols… for protection. Otherwise, it’s going to get too messy. (Kaye, Tohunga)

Lana (funeral director) also suggested the need for assisted dying education and for it to be okay for whānau to have differing opinions about assisted dying. Education brings more understanding and support within the whānau and for funeral directors caring for tūpāpaku:

I’m telling you what we’re missing is that education and that understanding- the acceptance… acknowledging people! We need to acknowledge that people are going to feel different about this than the person who’s [having] assisted dying and we need to acknowledge that that’s okay that they’re not happy with that.

It’s okay that they’re angry about it; it’s okay, that they’re embarrassed by it. It’s okay that this isn’t normal because it isn’t normal without being- it’s not normal, is it? I mean we have suicide, but this is a really abnormal [way to die]. And I’ve had to spend a lot of- I mean our funeral directors, they’ve, they, they get quite not emotional but, you know they, they get a little stressed when they take that call and they write down someone’s going to die on this date at this time because even for us [it’s challenging] because we’re still humans. (Lana, Funeral director)

A rongoā practitioner felt she was not sufficiently prepared with enough information about the Assisted Dying Service to support Māori whānau with rongoā who wanted an assisted death. Lynne (kai rongoā) highlighted how rongoā is used to extend life. This reveals a gap between assisted dying and rongoā; further considerations are required for these two end-of-life care options to work collaboratively:

[M]y thing is about life and living. And, and how people can use the rongoā to help them you know to, to live their best life… so the thing is not [assisted dying but] …to get people to change their lifestyle, change the diet, get themselves into the best possible condition that they can possibly be, physically, emotionally, mentally, all of that.

Be unafraid to speak about it. Be unafraid to ask questions, be unafraid to ask the hard questions. Be unafraid to cry, be unafraid to be ah, exasperated. Be unafraid to be angry. You know. Be unafraid to come into the space that we have and just let it all go, with the view to, being able to walk out with some kind of, lightness.

Just get rid of- because once you get rid of that weight- because when you’re told that you know, when you’re told that you know ‘your mortality rate is up, that’s it’, you know. ‘You’ve got three weeks. People don’t see past three weeks. All they see is three weeks. They don’t see past it. Because the professionals have told them, ‘You only got three weeks.’ (Lynne, Kai rongoā)