Hina-te-Ao Phase 3

Challenges After the Assisted Death

Funeral Directors Had Limited Information About Assisted Dying

Charlotte and David (funeral directors) commented that they were not provided with information about assisted dying to support them in their role. They are used to caring for tūpāpaku and conducting all manner of tangihanga to support the whānau. They use their own initiative to enquire about whānau experiences after someone has had an assisted death:

Charlotte: No, I had no information about assisted dying but I did know my duty and what my requirements were but around assisted dying? No.

David: I haven’t seen anything come through, mind you I haven’t been keeping my eyes open for it either. But what I’ve been doing just to gather my own knowledge is actively- when we have a family gone through that process, and if it’s appropriate, I’ll ask them, ‘tell me about your experience’. (Charlotte and David, Funeral directors)

Funeral directors had to learn on the job or go searching for assisted dying information from whānau and AD clinicians who were willing to share their experiences and knowledge:

And I’ve found families are very open about it. And I’ve talked to one of the local doctors here and I’ve asked him to make a time to come and talk to our team. I did ask him about 6 months ago and I have followed up but he’s just a busy man. But the intention is he will come and talk to us and just talk us through the process. I learned a lot when Charlotte came back from her, her man [client]. (David, Funeral director)

Funeral directors discussed the limited training they had around assisted dying which they felt impacted how they could support whānau during funeral services and the care of tūpāpaku. Jedi (funeral director) reflected:

I didn’t receive any training on it [AD] because I had just started the roll but I, I understood the need for confidentiality and, and respecting you know the wishes. I think for me it was how to approach it in, in the best way. So yeah, I, I felt a bit lost about, what, what to say to the whānau… So, I don’t know, I guess I did feel a little bit uncomfortable because that was the first time I, became really aware of it yeah. (Jedi, Funeral director)

Funeral directors noticed the differences between Māori whānau regarding tangihanga protocols and burial rites and procedures. The funeral directors thought these differences were not specific to having an assisted death but possibly due to differences in traditional cultural death and dying practices. Funeral directors prioritised the tangihanga tikanga and preferences of each whānau.

Tuna said she would not be surprised if tikanga around tangihanga would be different for whānau not caused by the assisted death but due to different tikanga across whānau and hapū:

Because everyone’s tikanga is different. Is, is how, how we see it, here. It depends on what they’re wanting. (Tuna, Funeral director)

Jedi considered assisted dying as a different kind of death – a death that is different from death by natural causes. She did not anticipate any changes in tikanga during tangihanga related to a person having an assisted death. She did note that some whānau have suffered a loss of culture from colonisation and this can affect their tangihanga preferences:

I’m just thinking assisted death can be seen as sort of, well it’s a breakaway from you know just naturally dying… I understand how the, the disconnection can be when you’ve- when you’re not raised within the marae, or with it. I mean I feel that sort of myself sometimes yeah, just that disconnection.

And then with that, being disconnected to the culture and the traditions and you know including karakia. I can just see how that would happen but yeah. So, I guess our people are still you know, it’s the unknown and how do you cope with the situation because it’s not how we’re used to it [dying] happening so. Forming new ways around it. (Jedi, Funeral director)

Lana (funeral director) reported on her experiences of bereaved Māori whānau trying to navigate tangihanga following an assisted death:

[Y]ou know, some family members (the person isn’t Māori, but the family members are Māori) … and so they again are struggling with the, the whole ‘goodbye’, the whole process, the whole, yeah. Just that it’s the same struggling, I think it’s the same struggle and it’s that same embarrassment or that same, ‘how do I navigate myself through this, this [assisted death?].’ (Lana, Funeral director)

Restrictions of Confidentiality and Health Professional’s Code of Ethics

One non-Maori whānau discussed with the funeral director their shock and disproval of their mother’s choice of assisted dying. David (funeral director) reported his conversation with the bereaved whānau; from his understanding the whānau felt they should have been more involved in the caregiving of their mother at the end of her life and that they felt the EoL Act took that privilege away from them. David (funeral director) was of the belief that whānau had to be involved in decision making, highlighting the need for funeral directors to have more information and training in this area of death and dying:

I, my understanding was she’d told them it was happening, and they had no choice… And that really broke them. Because they said ‘we wanted to look after Mum; we wanted to care for her. She brought us up as kids, so we wanted to return that, but she took all of that away.’ … that really made me quite surprised.

I thought my understanding was actually the whole family had to know and be on board and things like that. And that’s when I went ‘oh maybe, I don’t know as much as I, I thought or, some of the information coming through media and things is different to what actually [is happening]. And he said it was only about two weeks from first conversation to, to [AD] completion. (David, Funeral Director)

Beryl (funeral director) reflected on how hard it was to support bereaved whānau whilst having the knowledge that they were excluded from knowing about, or being involved in the assisted death of a close whānau member:

No, it was really hard. It was really, really hard because… I was in possession of the knowledge of the way that he had chosen [AD]. I was being- I was restricted by the, the, the confines of, of the, the, the protocols around hosp, the hospital chaplaincy policies. So, I really had to think about how am I going to offer this… woman, pastoral care ah in a way that’s going to, to give her some solace in the loss and the grief of her son? And I’ve had lots of, lots of, experience in helping people who are in acute grief, and I just fell back into that skill- skillset. (Beryl, Funeral director)

A hospice kaitakawaenga felt upset that one of their patients – whom they had offered manaaki and aroha during their time in palliative care, had had an assisted death without their knowledge. Grace Huia (hospice kaitakawaenga) found out that the assisted death had taken place after the man’s tangihanga. She said she felt hurt by not having this knowledge. It is likely this was due to the palliative care service not supporting assisted dying and the restrictions the hospice staff were under around discussing assisted dying with tūroro and whānau:

After the funeral! it was [nurse] that told me… I was a wee bit hurt. Staff didn’t tell me. This is, this is what’s happening in [name of rural town]. (Grace Huia, Hospice Kaitakawaenga)

Kaye (tohunga) considered the families’ need for privacy about assisted dying and that they do not refer to assisted dying as a ‘secret.’ She said there is a difference between secrecy and privacy; health professionals’ confidentiality of assisted dying is related to privacy whereas ‘secrecy’ is linked to something supernatural like, witchcraft:

Well privacy, it comes under the safety net of health, isn’t it? Whereas a secret is, is, is, kind of witchcraft stuff… Secrets, suspicions…Whereas privacy makes it official and comfortable like’ oh there’s some law there’. (Kaye, Tohunga)

Lana (funeral director) support’s Kaye’s (tohunga) perspective about the difference between privacy and secrecy exclaiming, ‘assisted dying is a private matter’ sounds better to families than saying ‘assisted dying is a secret.’:

‘Private’s’ a new word for ‘secret’…it sounds better saying it’s ‘private’, than saying ‘secret’.

There were several reasons whānau did not support assisted dying being recorded on the death certificate including stigma, shame, disagreement with AD choice, religious beliefs and family disputes.

Lana (funeral director) had several experiences as a funeral director regarding whānau not wanting assisted dying recorded as the cause of death on the death certificate. Although her experience is mainly involving non-Māori Lana felt that bereaved whānau and support workers involved in the process were often marginalised for being involved in AD:

You know I’ve had feedback from families saying, ‘I went to the bank, and the young teller went ‘ohhh, oh so she did one of them [AD], did she? She’s one of those.’ So, there’s stigma for people who are [having AD] … and remembering the [AD] end of life choice is the person who’s dying choice – it’s not the family’s choice.

So, a lot of the time the family are not in agreeance with what the person needs to do but then we allow this person to die and that’s their choice but, we forget, there’s all of that- that’s left behind. So, we have people that are stressed about going to the lawyer because they’re an old traditional family and they don’t want the lawyer to know that their family did this – in their mind [the] wrong thing of assisted dying.

Some people are really religious; they think you don’t go to heaven if you [had an] assisted death because you’re choosing to end your life. So [Government officials] they backtracked on that [recording AD on the death certificate] but didn’t’ tell us until after it was all pushed through. And so, I was pretty disappointed in that because again I think that’s a huge part that needs to be talked to…

Because some people [whānau] don’t want to talk about it; they don’t want to say it. They’ll ring up and go ‘my loved one is um, um- we’re going to need you on Thursday.’ And they don’t even want to say, ‘assisted dying’. So, you’re literally trying to tease out of them [assisted dying] … because they don’t want to say the words because for them it’s uncomfortable and they don’t want to be judged because it wasn’t their decision, but they’ve got to make the calls. Some of the people who are going to [have an] assisted death make the calls but a lot of family do all, all that. (Lana, Funeral director)

Whānau were often shocked to see ‘assisted death’ on the death certificate of their loved one. Families are responsible for respecting the wishes of the deceased whilst supporting their grieving whānau.

The reality of the wish of the person [who has the assisted death] is shocking them [whānau]. That, that’s what’s having the impact. Just like the whānau when somebody commits suicide, at the same level. Because it was taken out of their hands. The choice of the way of doing it [dying] and, and the timing had nothing to do with them. The whānau are angry. So, I’m seeing it from the perspective of the person, either the person who commits suicide or the person who has assisted dying. (Kaye, Tohunga)\