Hina-te-Pō Phase 2

Challenges with the Assisted Dying Procedure
Assisted Dying Secrecy Can Create Barriers for Health Professionals

Eve (hospice palliative care doctor) found it difficult to learn more about assisted dying; assisted dying attending medical practitioners and health professionals involved in the assisted dying process were not disclosing the process and procedure with her. She thought this was out of fear and it impacted. Not knowing the process and procedure impeded her ability to support whānau involved with assisted dying in her role as a palliative care provider:

We have, we have struggled to get the [information], and I’ve got a good relationship with the people who provide the service in the area now so it’s less of an issue.

But we have struggled with them telling us whether they’ve done it [AD] or not… Oh, I think they’re afraid of backlash and people being unkind and all of that sort of thing and…

I mean I’ve got one quite close friend who’s providing the service and he very much doesn’t want, you know, the friend group [to know] that he’s doing it. (Eve, Hospice palliative care doctor)

EoLC Act (2019) Policies not Supportive of Māori Death Tikanga

Brennan (assisted dying attending medical practitioner) was concerned about the language used within the EoLC Act policy as it limited cultural safety and competency. Brennan thought there would be a barrier for Māori as assisted dying protocols do not align with a Māori collaborative, ‘kaitiaki approach’ to death and dying caregiving practices:

The system … just a fundamental lack of understanding around the process of death in the traditional Māori world which is not all Māori… anyone who is sitting in that world and therefore having difficulty getting support from the people [whānau] beside them, might not have a lot of help – I would worry. Certainly, the practitioners almost certainly won’t know or be conscious of what they don’t know. (Brennan, Assisted dying attending medical practitioner)

Hospice Staff

Many hospice staff have found assisted dying challenging. Harriet (hospice nurse) shares her views about the new challenges they are facing in hospice that has challenged hospice’s identity and ideals:

Yeah, and we struggled I guess over the time with the kind of medicalisation of death and dying here, and what were we? That’s been quite a journey, hasn’t it…?

For me, it’s just been really influenced by the physical symptom side of dying. Really that, you know, even though that’s supposed to only be 20% of the work around Te Whare Tapa Whā, for me working here it’s probably about 80% of the work…

And because we’re [seeing] more and more complex cases, I’ve noticed in the [number of] years I’m here… what’s taking our time [is] caring for complex physical cases. And dealing with the health model and the environment… (Harriet, Hospice nurse)

Funeral Directors

Jedi and Tuna (funeral directors) recalled waiting for an assisted death to take place before picking up the tūpāpaku. Jedi reflected on the experience of knowing the date and time when the assisted death was taking place. This impacted her personally due to it being the first assisted death they had been a part of:

Yeah, it did [impact me] you know. I remember the day really clearly because it, it did impact me on a personal level as well because it was new to me. But I mean [time] o’clock was the time that she’d set.

And when I was driving around, because it was my lunchbreak, and I’m driving around and then it started to rain softly and to me that was her passing. And then I just acknowledged it you know, and then feeling wow, you know like, this person- I just felt like it was happening at that time and it, and it was so. (Jedi, Funeral director)

Tohunga were unsure whether assisted dying interfered with the natural process of death and tapu. Kaye (tohunga) was concerned about assisted dying not being aligned with Māori views of death and dying as it may upset the wairua:

[Assisted dying it interferes with the natural process from a Māori point of view…] It could be. Because they are influenced by what is going [on]; they can see what’s going on around them, even if they’re unconscious. Their mauri force is sitting above their body watching everything that’s going on and hearing everything. So yes, there is an interference for the person. Not only for the person who’s going through the transition but also for the people who are observing or being in the transition with the person.

Because when there’s any interruption in the tapuness, the sacredness of that transition, and the moment that they leave, there is a disease being created. In one way or another. If it’s bad, disease is being created definitely. And on every level of the tinana. Unbeknown sometimes by the living… those who have passed over, can also have an effect on the living.

And the person who is pass-, trying to pass, because the, the tūpuna who have come back in spirit and wairua to bring this person home, to take this person home to Hawaiki with them all they want to do is protect that person who’s in transition. Because they are there to take them safely across. Now if… the tapu is being upset or distorted in any way they, they are protectors; they come [and] they kick in as the protectors of, of the tinana that is a vulnerable state.

That [tinana] has no way of expressing or, or, or letting ah the living know its needs or his or her needs or their needs. And so, they ripple, cause ripples in the wairua within the room and even within people or it doesn’t even have to be in the room (they could do I mean they are wairua); they can be everywhere and anywhere. (Kaye, Tohunga)

Kaye (tohunga) felt one whānau she knew was not prepared for the assisted death which brought up raru in the room where the assisted death took place on the day of the procedure. She recommended that whānau who will be involved in an assisted death need to be educated so that on the day the māuiui person can have their wish to hasten death in a supportive environment:

Not prepared! So, my suggestion is that everybody is notified; part of the assisted programme must have conditions. That everyone who’s going to be in the room has been a part of the process throughout so that they have been prepared for the moment of the, of the assisted dying happening.

And that, that is able to be done peacefully, not traumatically. Trauma brought in. If people choose not to be there for that time for whatever reason, then they must be [well informed about the procedure]; that everybody is clearly, that there’s a protocol.

And that if they don’t heed the protocol, then they’re not going to be in that process – they can’t be in the process [they will not be able to] enable the person to be given their true wish of their way of dying. (Kaye, Tohunga)

Mere-Pere (hospice kaitakawaenga) explained how she and a kaumātua were unable to be present at the death of the tūroro for different reasons, but she also wondered if it was a wairua protection for them:

Well, so we had our you know ongoing visits and that and then he ended up at [hospital name]; he was in and out of [hospital name] quite a bit but he had broken his hip. And that was just it for him and of course… I didn’t get to visit him in hospital because I had COVID and he was going home to have the assisted dying. Matua [name] couldn’t get there. And then I wondered… ‘is that the wairua keeping us, I wouldn’t say ‘safe’, well maybe safe or something?’

What was the wairua’s involvement there with us both because one of us would have gone (and not necessarily been there because we’re conscientious objectors so I couldn’t have been present), but I could have gone after to the house or could have gone before to see him, before the [day] when he had I the… assisted dying. And so yeah it was just interesting how both of us were called away, me having Covid and Matua [being called away]. (Mere-Pere, Hospice kaitakawaenga)

Kumarahou (kai ronogā) discussed people feeling divorced from wairuatanga (spirituality), specifically surrounding death. He thought this lack of awareness was due to knowledge about death and wairua not being passed down inter-generationally due to urbanisation which increased peoples’ fear around death:

Lots of people are because they’ve not had the chance to learn. Because they’ve been divorced from the, the environment in which that knowledge is passed on… the thing is see, we listen to our headphones.

You know we are so, so electronically connected, you know … a lot of people are afraid to be quiet. You know. And, and, and that’s why so often and, people don’t understand. Like I talk a lot, I say ‘I might drop dead tomorrow.’

And everyone thinks ‘oh!’ I say, well it’s perfectly natural. (Kumurahou, Kai ronogā)

Kaye (tohunga) thought people had not learned about these spiritual distinctions and that the views of Māori around death and dying had been simplified over time:

There’s been a reason why we were not- never told the real truth about mauri. Like mauri, we’ve been instructed if you want… like I have a mauri. I’ve laid a mauri in this room to stay here as a constant, to protect it and be here as a life force of me, it’s a part of me within this room to keep things safe, my taonga safe and the, and the visitors that come now into this space, safe.

And at such a level that nothing outside of my highest good, my highest good, because it’s me, this whare… There’s a mauri force much bigger than this area that protects it. But people aren’t being told that…

They’ve shrunk; they’ve deliberately shrunk it down to wairua. To shut out the true power that we hold within the cells and the true essence of who we are. [Mauri] is the vehicle. Interconnected. It has to be attached to a tinana. The mauri force has to be attached to the tinana. (Kaye, Tohunga)