Kaitiakitanga Assisted Dying Pathway

Hinauri | Reasons Why Māori Do Not Support or Want Assisted Dying

Eleven people from the North and South Island were interviewed across six interviews for their views on why they did not want to use the EoLC Act themselves or why they did not support others to use the Act. Many whānau told us their reasons for wanting an assisted death included preserving or upholding their mana at end of life, having a dignified death, to have control over their lives, to end pain and suffering and to reduce the burden on whānau. We also wanted to give whānau an opportunity to share the reasons why they did not consider assisted dying to provide a balanced perspective.

Cultural and spiritual reasons

Whanaungatanga – It is all about caring for whānau

Choosing not to have an assisted death highlighted whanaungatanga (relationships) and protecting special whānau relationships. Bell said:

It’s [not supporting assisted dying] got nothing to do about religion. I think what it’s got to do about is family relationships. And that doesn’t necessarily- it’s not necessarily grounded in religion… And I think that’s what makes the difference between a Māori working with a Māori… it’s that relationship and that wairua between that thing and the lack of it over here [te ao Pākehā].

Whanaungatanga – Protecting whānau from suffering

Duck did not view assisted dying as part of her end of life plan. She considered the negative impact her assisted death would have on her whānau, the burden of knowing about the assisted dying date and the burden of memories they would have following the assisted death:

I don’t see this as part of my plan for me. Um it’s, for me, I would like to be with my family right through to the end. I would like my family to um, not to have the doubts and the questions after. Because then there’s bound to be ‘why?’ Always the ‘why.’ Um and for me it’s you’ve set a date that you’re going to die, your family know that date, some will look forward to that date, some will dread it. And then that date comes around every year, those memories will come back every year… my children would not be at ease with that after I have gone.

[Person’s name] would not accept that. It’s just not in her makeup. That that would happen… No, it would not offend her it would disturb her constantly. She would be reminded that she wanted to hang on to me as long as she could. But I chose to leave her, to end it with her. Because she, she would want to hang on to me as long as she could like the others. But um for me to do that to them, it’s not in their makeup to, she wouldn’t get over it. (Duck, does not support assisted dying)

Assisted death is not something to be shared outside iwi, hapū

Bessie who cared for her seriously ill mother and father commented that assisted dying is not something her whānau would want to consider but if they did this information would not be shared outside of iwi and hapū:

I just feel as though you know there’s that kind of kōrero out there that, that is in many aspects of, of te ao Māori… within our iwi, within our hapū there’d be, whakapapa information that’s shared and whakapapa information that’s not. That’s ours to hold, not theirs to know. And I think that would fall into that category. (Bessie, did not support assisted dying)

Assisting people to die versus assisted death

People we interviewed in the Waerea study acknowledged the importance of assisting people to end their pain and suffering at the end of life, but this is quite different from assisted dying. Duck recalled working with a dying patient who she assisted to die comfortably:

I got a phone call one time from a hospice doctor, to go out and give um, relief to a patient… And ah but he said, ‘be aware you may, in order to get her settled down, you may put her into sleep that she will not recover from.’ And he said, ‘be sure you have that conversation with the husband before you start settling her.’ So, I had to take the husband aside and tell him, ‘this may put her into a sleep that she cannot come out of.’ He said, ‘please put her out, do whatever you have to do, to keep her out of pain.’ And so, I stayed there with her and just kept giving her, her shots, until she settled and then she slipped away from us. (Duck, does not support assisted dying)

Duck said in her whānau interview assisted dying is more than assisting people to not have pain and suffering – it has been designed to end life:

Sarah: [E]ssentially Mum and Dad like I’m their enduring power of attorney so if anything happened to them, it’s like if they went into hospital type thing, I’d get the choice of whether or not to turn off the [life support] machine. So, in the, in essence you’ve already agreed to some level of assisted dying.

Duck: But the assisted dying is to help me so that I have no pain. So that my leaving this earth is not a, it’s not to help me leave, it’s to keep me-

Bell: Comfortable

Duck: [Free] from pain until I leave. That’s the part, the assistance. But to help me leave, no. That’s not what I want. (Duck’s whānau, do not support assisted dying)

Wairua beliefs – Listening to wairua

Most people who were interviewed for their views on why they did not want to use the Act were unfamiliar with assisted dying criteria and safeguards. Te Reo, who has a life limiting condition, reflected she was unaware of assisted dying and would not want to use the Act because she has a strong spiritual belief system and relies on her spiritual support system to guide her. Assisted dying is not part of that system:

… the thing that makes me definitely say ‘no’ [to assisted dying] is I have a really strong you know- you got to have a strong trust, a belief, and a faith. And it doesn’t have to be in God but first you got to have it in yourself. Those old people [ancestors] gave me ah, through me, listening, whakarongo, titiro, watching, listening……it’s a feeling and its a, a knowing, a prophetic feeling and knowing that um, they [tīpuna] already told me I’m ‘going to live a long life’… I can hear them talking, ‘it’s not for you’… I have such faith in them. But you’ve got to have strong faith in yourself. I’d never do that because I can hear them say, ‘it’s not for you.’ I can hear it so loud aye.

And, you know, whakamoemiti the karakia [I say]; it’s not the exactly the Christian one but it is and all denominations… because it’s all about the, the, the practice of faith and belief no matter what denomination… They already told me you know, ‘if you feel angry, you repent or you pray and you let it go. If you hold on to it, then you’re building up something inside of yourself that creates um an unwellness.’ That, that is so strong aye. (Te Reo, does not support assisted dying)

Religious beliefs – God is in charge

People felt strongly they would not want to use the Act themselves based on their religious or spiritual reasons however, some people felt that it was the choice of the individual to choose. Erana who did not want to use the Act said:

But whatever other people decide is right for then that’s pai ana (okay), there’s no judgement on my part. But I belief my faith is what dictates how I’m going to conduct myself in that period of time.

According to his religious beliefs Whakaaro Nui said:

[A]ssisted dying (“Assisted transition” or “Assisted journey”) is a, a legalised suicide… legalised murder because the word of the Lord says so. He gives and He takes [life].

A strong theme that influenced people to NOT want to use the Act was the idea that God gave life and God takes life. Whakaaro Nui said:

Of the assisted dying, I don’t believe in it because all I know… my head is telling me ‘God created us. He breathed into us the living being. And whenever He wants, He can take us’… like if I fall down on the table and hit my head on here, I could die. And yet a, a man will survive in a mangled car. Why? Why did he not die? (Whakaaro Nui, does not support assisted dying)

In his role as a senior kaumātua who sits on the paepae at his marae Whakaaro Nui commented that assisted dying brings new challenges as kaumātua have to consider the tikanga of receiving tūpāpaku that have died from an assisted death as they too need to lie in state at the marae:

… I’m looking at the afterthought of that [assisted death]. Okay, he’s [deceased’s] going to come back as [from] assisted ah dying; come down to the marae. I’ve got to love that family first and foremost regardless of what they’ve done or allowed them to do what they did. But you still got to love them. (Whakaaro Nui, does not support assisted dying)

Erana also reflected that “God tells you when you die, not man”:

I found my faith in [year]. And by chance someone from a church in [name of rural town] had a dream, about me. And she showed up at my job at 7.30 in the morning and she said, ‘I need to talk to you.’ And I said, ‘what’s going on?’ And she goes, ‘The Lord told me to come and say to you, that He tells you when you die, not man’…. And I was just, I cried. Because she- we’re not close her and I. She doesn’t know my story. And, and I knew when, when she showed up at my job, I knew it came from Him. Because I had a big cry and I said ‘Lord, like what’s going on here? Like, you just brought me through this [cancer journey] and now I have to face this. Have I not had enough already?…

[A]nd then the final thing she said that that really changed my um trajectory of how I thought about what I was going through is she said, ‘God is telling me to tell you that your story is His glory.’ And I said ‘okay.’ And, and so once I understood what’s happening here, I went ‘alright Lord.’ And then I, that’s how I braced myself. I said ‘it’s not about me anymore. It’s not about, this story, what I’m walking through, is not about me, it’s about you’re teaching others through me. And if I can do that, if I can be that vehicle for you then pai ana let’s go!’ (Erana, does not support assisted dying)

Erana had previously considered assisted dying when she was in physical pain but her religious beliefs have changed her outlook:

So, when I was younger yes, absolutely and I did consider this [assisted dying]. Um. Because it’s the idea of, being in pain for a long period of time um or being unaware. Like, if someone else is wiping my arse and I’m drooling and I’m not speaking, I can’t communicate, I’m high on drugs for long periods of time and I’m thinking months, what quality of life is that? So, that’s at one point in my life yes, I did consider it. Now that I’m older, and I have a faith, and my faith believes that, um, like God said, ‘I’ve no right to take my life. He decides when I die, not me.’

… what’s changed my mind is I don’t want to 1) put that responsibility on somebody else, that they’ve taken my life. And 2) I’m trying to take control aren’t I, of the Lord? If I’m trying to kill myself, I’m trying to take control of the Lord. Everything happens in His perfect timing, whether I understand it or not, whether I like it or not. So, I trust that. I trust that and I will surrender that control to him, you know. And I might not understand in the moment why I’m still here, on drugs or whatever but it must, it must be a ripple effect for somebody else in my whānau who has to learn something at that time. So that’s okay. (Erana, does not support assisted dying)

Bessie observed that her father who she cared for in his older age may be open to having an assisted death in the future, but she could only see this pathway open up if her mother died first:

I don’t think Mum would. And I don’t think Dad would this side of Mum being alive… But Dad’s state of misery, he has said before you know, ‘I shot my beloved dog in this state.’ You know. Um. And ‘why should people, why should we have to carry on suffering?’ So, he has made that statement. I don’t think he would have thought beyond that, but I think, if Mum- I’m concerned for Dad because he has said, um, ‘I don’t know how much longer I can walk.’ This is just in the last few days. ‘I don’t know how much longer I can walk, I don’t know how I can stand up, I don’t know how I can lie down, this pain is intolerable’ (Bessie, does not support assisted dying)

Bessie made the point that ordinarily some people, like her father may not wish to use the Act because it could contradict their religious values and beliefs, however she commented that there comes a time when people are in extraordinary pain and can no longer cope. Experiencing intolerable suffering opens up a new possibility for people to change their minds about assisted dying:

And we haven’t gone into that conversation ‘okay Dad well what happens next when you can’t walk? When you can’t take yourself to the toilet, when you can’t manage those things?’ that I know he wouldn’t want me managing for him. But neither would he want to be away from Mum. So, I don’t know what our next step is. And how we manage Dad in the not very long term you know…. I went in the other morning…and he just looked mis- I said, ‘Dad, are you okay?’ And he shouted at me, he said, ‘fucking not okay, what do you bloody think I’m like?’

And in the same breath he said, ‘I’m so sorry darling, I’m so sorry I said that to you.’ I said ‘dad, shout at it… address the pain; I know that wasn’t at me. ‘You tell the pain what you think, tell it where to go, tell it to fuck off if you want to. Let it out dad.’ Yeah, and I’ve never heard my father use those words in my life. And so that kind of gives a picture of I could imagine that dad could get to a point, where if maybe Mum wasn’t there, he could say ‘I’m done, help me. Help me with this.’ And none of, I don’t think any of us would, would argue with that.

It’s intolerable suffering. But, and how, how do you watch some, I take him for appointments sometimes like, he had to go and have an um, a scan done or an ECG or something and, to get him, I took him in, in a wheelchair. And he could get himself up out of the wheelchair with pain but then to get up onto a hard surface of the bed and he was just groaning and crying and, and they were trying to help him and pull him and he’d say leave me alone, I need to do it on my, I need to get myself there. And he’s trying to move his body in such a way, that the pain’s minimised. And I just had to step, I had to step out the door and just sobbed and sobbed, it’s just awful. (Bessie, does not support assisted dying)

Toni supported the legalisation of the Act, “I voted yes for assisted dying” because they value the idea of mana motuhake. However, they also believe there is a natural order or timing to death. However, if Toni became ill, they may reconsider using the Act:

I like choice. I like people being able to have the choice. It’s probably not an option I would choose for myself. But I understand that in you know, for some people it may be a viable choice. Um. Personally, I wouldn’t… and that’s me saying that as a healthy person. You know that could change if I something happened to me. But um, yeah, I just think when it’s your time it’s your time…Yeah and I don’t want to rob my family of that time you know. (Toni, does not support assisted dying)

Bessie did not agree with the assisted dying criteria that requires a person to consent or assent on the day of the assisted dying procedure as she felt if a person had consented previously that they wanted to have the assisted death and then lapsed into unconsciousness it should still be legal to have it:

… if you’re unconscious or so… Ah for me that would be the time when I would say ‘okay up until now this has been what you wanted, why wouldn’t I allow you at this point to carry on?’ (Bessie, does not support assisted dying)