Kaitiakitanga Assisted Dying Pathway

Hina-te-Pō | Challenges related to the assisted dying day process and procedure

Introduction

The findings from the Waerea study highlight that dying is a complex process, and assisted dying adds another layer of complexity whānau have to untangle and navigate. Assisted dying is unfamiliar to whānau; they described it as “new, weird, different, strange and surreal. Some whānau we interviewed told us they were hopeful the person would stop wanting an assisted death because they felt so uncomfortable about it. As kaitiaki, whānau monitored who got told about the date and time of the assisted death; they continued to watch and manage negative projections and judgementalism prior to and during the assisted death. Whānau experienced a state of wehenga (confusion, heightened emotions) as they felt unprepared for the assisted death.

Rising anxiety – Burdened knowing the assisted dying date

Whānau felt unprepared in the days leading up to the assisted death. Whānau we interviewed had not experienced supporting someone to have an assisted death before and this created anxiety for them. They often felt uncomfortable because they did not know what to expect. Furthermore, not everyone had experienced being with a dying person before. Some people felt the burden of knowing the date someone was scheduled to have an assisted death. Ella recalled there was increasing anxiety “during that space because we all obviously knew [the date] – Oh my God the day’s coming up.”

Linda also commented:

[I]f you know a date… it can be helpful but man it’s a weight… But then I think in old, old culture when you knew that this person was passing you know they would be weaving whāriki, they would be collecting kai, this would have all been done. When my grandmother was passing, we were preparing everything you know, you can feel them gradually leaving um. So, it was a gift but yeah, strange when it’s your first time going through this. (Linda, daughter)

There were often issues to do with the assisted dying date such as who would be told the dying date? Who would whānau deliberately not tell? Whanau feared relatives could disrupt the procedure or try to stop it. Linda wanted to protect her Mum but found it a very hard space to be in. She said…” the scariest thing is just the knowing the actual date and time.” (Linda, daughter)

Whānau often had mixed feelings about the assisted death. They were often very sensitive in the days leading up to the assisted dying day because they did not know what to expect. Feelings heightened as the dying day drew nearer. At the time people said it felt “weird”. One person said the instinct was to “save” people. However, whānau were relieved when the person had a peaceful assisted death. Despite rising anxiety and families finding the process ‘hard’, Olive said her grandfather’s death was peaceful and in hindsight, it was beautiful:

I just remember when we were driving up on Friday [to his place where his assisted death was] and we were both [Olive and husband Carlos] just kind of in the car and we were like ‘this feels so surreal.’… I [thought to myself I] know in time this is going to be a really beautiful weekend to look back on… but I still remember driving up there it was really heavy and like, not knowing what to expect. And yeah, it was all not knowing what to expect and it kind of goes against all your human instincts of wanting to save people. It feels really weird to just sit there and let something happen. But then in hindsight and looking back on it, it was a beautiful weekend like you, you couldn’t have written it anymore beautiful and anymore peaceful. And just having everyone together and lots of laughter and tears and everything. But leading up to it was, it was, was hard but just so trying to keep in mind for any other whānau, going forward that it’s hard… (Olive, Granddaughter)

Linda commented about the anxiety that can happen as the dying day approaches.

[T]he heaviest thing was knowing the date [Mum would die], and those unexpected things that pop up like in the last week, oh- you’re the person who’s got to drive them to this [assisted dying procedure] appointment. Just the not, not, not realising the process on the day. (Linda, daughter of mother who had AD)

Most people chose to die at home and therefore were able to prepare the home in the way they wanted for the assisted death. Some people chose to die in bed while others were sitting on a chair in the lounge or were in a tent. One woman wanted to have the procedure in hospital. However, the space that was provided was not ideal highlighting the need for culturally safe spaces in health facilities if this resource is needed by whanau. Ella recalls her family’s experience when her grandmother died:

And like, we got there and there wasn’t even like chairs in the waiting area. We just all had to stand there leaning against the wall… With everyone walking past with the cleaning trolleys and everything… And the elevator banged every time somebody went in it! (Ella, mokopuna)

Ella’s mother, Linda recalled:

But it was only more uncomfortable because they had told Mum that it was going to be very discreet, and nobody would know and you’re going to have real privacy and then everyone’s walking past. And then it was like [the opposite] … And the other thing was like so that room is also used for tūpāpaku which family would go in and to not have chairs in the waiting area! Like it’s, it’s just not a comfortable space. So that would be something [to address] … Not just to accommodate for, for assisted dying. If this is your space for whānau to be for this very special moment while you’re waiting for the funeral director either way, make it, make it a bit more family oriented… (Linda, daughter)

Most people who wanted to hasten their life using the assisted dying service did not know that an assisted death involves the person choosing how they want the lethal medication to end their life to be administered (self-administered or administered by an assisted dying attending medical practitioner (AMP) or a nurse practitioner (ANP)). People who met the assisted dying criteria informed the AMP during their assessment whether they wanted to administer the medication themselves or whether they wanted the AMP or ANP to do it for them.

The AMP brought the medication to the place where the assisted death took place on the assisted dying day. There are four ways the medication could be administered. Only two people we interviewed chose to self-administer the medication as most people wanted the assisted dying medical practitioner to administer it. Many people were misinformed or confused about the process:

I had to explain to Mum [what the correct process was] because she said ‘Can I just have it? Can I just have it lethal medication to end my life] [here in a drawer?’ They- everyone thinks this [is] right. They think you get a box of pills, and you pop one and then you pop another one and then yeah, you sit in a chair, and you go to sleep. And he [assisted dying doctor] explained it and she couldn’t quite grasp it… Yeah, whānau do honestly have a belief that someone drops off a lunchbox [with assisted dying medication] that you can use whenever you like; just keep it. My mum said ‘can I just have it in the drawer? And just use it when I want?’
(Linda, daughter)

Whānau were often very sensitive on the day of the assisted death. The memories of the procedure are still very vivid for them despite the person dying months before they were interviewed in the Waerea study. Families were acutely aware of everything that was happening around them on the day of the procedure. Whānau did not know what the lethal medication would look like and when some people saw the needle and medication for the first time it caused anxiety.

Several whānau told us they felt unnerved seeing the large size of the syringe that contained the medication. This caused distress and a sense of shock for younger whānau members who were attending an assisted death for the first time. Linda suggested that whānau ask to see the syringe during one of the previous assisted dying assessments or they could view a photograph of the syringe and medication as this would help to prepare them:

So, [name of AD doctor] came in and he just has this really like horrible bag- like it was horrible. And so, I just think there [is] something nicer for that moment, something nicer set up for him that he can carry that equipment in. Lovely, lovely guy. And then, ah what we weren’t prepared for was the size of the syringe – like it is huge. And so, that is quite confronting. So, I think if I as the person, the contact for the family (the main contact) had maybe even been asked ‘would you like to see what the equipment looks like?’ – it does look different to standard [medication] you know. (Linda, daughter)

Ella’s mother commented her whānau were not prepared to see the size of the syringe used to administer the medication, “We just weren’t prepared to see it.” Her daughter Ella who was her Nan’s kai manaaki spoke about her distress at seeing how big the syringe was and how much medication it contained:

’d take my nan to the hospital, and they’d try like six times to get an IV in and so I was really like- I’d watch everything. I knew every kind of medicine my nan took. Yeah, I kept track of everything to do with her care. And then to see that [needle and medication] and not really know what it was- it was quite a shock. Yeah. Because he [assisted dying doctor] said it [was] like a ‘needle,’ oh, ‘injection.’ To me that’s like you know, what you get your flu jab with – it was like huge. I was like whoa!! No seeing it [syringe] made me try and leave.

But my mum stopped me because she knew it would be better for me to stay but, I saw it [afterwards in my mind] every day trying to leave… It’s like the size of my phone…. Yeah, and it’s like yellow and it’s just like whoa! No, the liquid [was a lot] [b]ecause my nan’s arm was like [thin]… And so, to see that next to the arm it’s like oh my gosh like, ‘that could kill a horse’ like you know! Like that’s so whoa- abrupt. Like they could at least put a case on it so you can’t see the fluid. (Ella, mokopuna)

Some whānau, particularly those less experienced seeing death, need assisted dying death education to prepare them for attending an assisted death. This will help to prepare them and reduce feelings of fearfulness and shock. Linda commented:

[We need] education around [dying] like their [tūpāpaku] colour changes instantly. And I think that’s because of the medicine like other tūpāpaku don’t instantly change colour that quickly. (Linda, daughter)

Ella, who was her grandmother’s caregiver and she attended her assisted death observed:

[T]he arm that he [assisted dying doctor] put the needle in (me and Mum was sitting [there]) and then the other arm my cousin… was holding my nan’s hand on that side. And as soon as it happened, finished, I got up and went to- ran to my dad to have a sook and then when I came back in and I saw my nan’s hand on my cousin’s side it was like it was really discoloured like it looked kind of scary to me…. It was just like yellow…. It was instant… but the side Mum was on still looked absolutely fine and I’m not sure if that’s the way that the medicine went or what it was… (Ella, mokopuna)

If dying is a new experience for whānau it can add another layer of stress for those who are present when someone dies from an assisted death. For example, Ella (early 20s) was upset when her grandmother’s mouth dropped open after she died. This upset Ella greatly:

I got upset because, like, obviously this isn’t a judgement on the doctor because I [think] he did a great job, but he was busy. And he didn’t shut it [Nan’s mouth], so she was left there with her mouth open for a long time… Then that was just like quite upsetting that, yeah, I just didn’t want my nan’s mouth just hanging open like that. (Ella, mokopuna)

Several whānau chose to tell other whānau members about the assisted dying date a week or several days before the actual day to help prepare them. The timing of telling people felt challenging. There were multiple reasons for this delay however, the main reason was that assisted dying was new and different and whānau had to navigate their way through this new way of dying. Some people wanted to avoid involving others in case it caused problems, particularly for people who were known to be judgemental or have significant mental health trauma or social problems. Whānau wanted to protect people. There was a dilemma because whānau also wanted people who were going to attend the assisted death to have a choice about being present and to enable them to emotionally prepare themselves. There was also a risk when keeping the death private that others would find out afterwards and feel upset being left out. Linda told her young adults in her family a few days before the assisted death was scheduled:

Well, I just, I just kept saying [to Mum] like, ‘Can I, can I, is it time to tell them? Is it time?’ So um, so then [eldest daughter] got home and then me and [husband] had agreed regardless of what Mum’s saying, we need to tell our children because we knew… we might be the only ones [there with Mum when she dies] or, or even one of our daughters might have said, ‘I don’t want to be a part of this’. So, me and my husband had committed that at the end of the day it might only be us in that room with her. It was, if she was getting a choice we were getting a choice; everyone gets a choice… Yeah, they knew it was coming because I told them when [AD doctor] visited. (Linda, daughter)

Whānau, we interviewed told us that it was important that everyone had a choice about attending the assisted death. Assisted dying is a new and unusual way to die so consideration had to be made for tamariki, mokopuna and people who could struggle with being there. Manaia and Huia’s brother said he did not want to be present when his mother had her assisted death and the whānau accepted this. Olive’s young son also said he did not want to attend his great grandfather’s assisted death. Being present at a death may have been a concern for some people regardless of whether it was a natural death or an assisted death:

… it’s been good because you know it, it meant that she didn’t have to suffer so much… so my sons were really cool about it… I got three boys: well, they’re three young men now they’re in their fifties. But they were really cool about… And, so basically was not only my two youngest mokopuna that were here but we asked if they wanted to come and watch their nani… [die], and they didn’t want to… Yeah, they didn’t want to see their, their nani get put down sort of thing you know. Yeah. They came to the tangi, but they didn’t want to be here when the deed was actually done. (Ruski, husband)

Ruski supported his wife to activate her mana motuhake to have an assisted death and she understood why her mokopuna chose not to attend:

I was just happy that she was getting… what she wanted done… we actually ah spoke about it and she said, ‘they don’t want to come that’s fine’ you know, I know it will be hard.

Tania said her sister Rose only wanted certain people to be present at her assisted death however, on the day other whānau members arrived and took over and this created difficulties for Rose and her whānau kaitiaki:

We also knew that Rose had decided she only wanted a certain amount of people there because she didn’t want a big scene… [W]hat prompted me to share [in the Waerea study] was is that you, you have an idea of how you believe it’s [assisted death’s] going to go, but what you can’t plan for is other voices that come in at the last minute. And what should have been a, a peaceful process ended up being a- [problem] (Tania, sister)

On the day of her assisted death Tania observed her sister had become “quite stressed” and she asked her:

‘Sis what’s going on?’ She was like, ‘Oh um, now everyone wants to be in the room.’ And when I said ‘Sis, this isn’t about everyone, this is about you…. What you want? What you need? This is your journey, your process, what you want?’ And she was like, ‘I don’t know because now you know, [family member] and [family member] want to be there… (Tania, sister)

Sadly, Rose was put under enormous stress at the time of her assisted death because whānau who turned up unexpectedly were unprepared for the process and did not cope with what was happening:

She (Rose) should have had a comfortable passing. She was at peace; she was saying her ‘bye-byes.’ There was a, there was a warmth to her face. There was a warmth, a comfort, and an acceptance you know; there was an acceptance to it, so much so she was thanking all the people in her life. For the life she lived. And instead, her last moment was trying to pacify her [relative]. (Tania, sister)

One of the main challenges experienced by whānau during the assisted dying procedure was how suddenly the person died. Whānau did not feel prepared for how quick the death was. On the day of the procedure the person was conscious; some people were walking around, some were talking, joking, offering advice, singing, having whisky or sharing a joke. Whānau joined them in this space (walking alongside them). There was often laughter, tears, sometimes karakia or singing… and then suddenly, after the medication had been administered the person was gone. Death felt sudden and unexpected. Whānau felt unprepared and they became very emotional:

[F]or Māori… if you are there and you actually see it [assisted death] you then get it… you actually get it straight off the mark its- there’s no asking any more questions; that person’s gone. Just like that. We, all kind of were just in shock because it had happened so fast. It would have been well under five minutes, probably more like three minutes and that’s how fast it happened yeah.

We stood there and we had a shot of alcohol. And kind of just looked at each other still shocked – horrored [sic] after having a bit of a gas about it…and just all dumbfounded, with what just happened… It was so bizarre – the mixed emotions was just fucking nuts.
Then afterwards the whole three of us were just standing there ‘like what the fuck?’ Just, I just didn’t know what to say. I just said, ‘What the fuck; just happened?’ And [daughter of person who died] looked at me and goes, ‘I know right?’ And [son of person who died] goes, ‘Shit, shit, that was fast’. I said, ‘Wow, that was so fast. That was just so fast.’ We just, I think we prepared ourselves… we thought we prepared ourselves for it, that this is going to happen. We knew it was going to happen, but when it happened – we weren’t prepared. (Janice, friend)

Whānau relied on their own resources to prepare themselves for the assisted death. At the time of the Waerea study interviews there was little local information available for whānau to read or listen to that could support them. Despite, feeling as though they were prepared some whānau were shocked following the assisted death:
One family who was supported by their local hospital to have the assisted death highlighted that the space the hospital provided was not appropriate for the purpose of an assisted death and this placed a burden on the whānau:

That room was horrible… Yeah, and the lights, like at first, we thought ‘oh you know Nan’s giving us a message through the light [flickering]’ and then the whole time they’re just blinking on and off and on and off. And it’s just hot; like you already feel sick and then the lights are going on and off… they have sensory lights, so somebody has to move for it to turn on. And none of us are moving – we’re all stiff like anything because we’re just freaking out and the lights are going on and off. (Ella, mokopuna)

Being with someone who is dying can often be a very emotional and stressful event in our lives, regardless of if they die from an accident or illness. Because assisted dying is new and unknown it can present an additional layer of complexity for whānau to navigate. Ella commented that her mother was under a lot of stress just before her grandmother died. No doubt this was an accumulation of many things including navigating the assisted dying pathway especially leading up to the dying day phase:

I don’t know if Mum knows this, but she was having like mind blanks where she would just forget like a whole block of time because obviously, she was the person not leading all this [assisted dying process], but the main person [kaitiaki] of it all, so she was taking all the trauma (I guess) on… (Ella, mokopuna)

Ella’s mother Linda commented on how fatigued she had become caring for her mother and navigating and supporting her wish to have an assisted death. She commented, “they [kaitiaki] shouldn’t really be doing it alone”. Her daughter Ella noticed her mother’s fatigue and memory loss when she was the sole kaitiaki for her grandmother’s assisted death confirming:

Their family really needs to be there for them. Because I mean she [kaitiaki] could have burned the house down if nobody had of been watching her too. (Ella, mokopuna)

Whānau often had concerns about how certain family members would cope during the assisted dying procedure. They were afraid that someone could interrupt the medication administration process. Linda was concerned that someone might try to prevent the assisted death from taking place for her mother. Her mother was concerned that a family member who had a history of mental illness could become upset during the procedure if they were present.

Several whānau spoke about their concerns for the welfare of the attending medical practitioner and the Nurse Practitioner on the assisted dying day. Linda spoke to the assisted dying medical practitioner about this as she was also concerned for his welfare. A decision was made by her whānau not to include a relative on the day of the procedure to protect them from experiencing any undue stress:

I mentioned that in that space I was very worried about [name of assisted dying medical practitioner] and you know my one of my first conversations with him was ‘what if somebody acts to stop this? What if someone verbally or physically starts to act to stop this?’ And I wasn’t sure who it could be… But [name of relative] was a particular concern for Mum. Mum asked for [them] not to be contacted… just because of previous behaviour but, even if Mum was dying at home very naturally, [name of relative] could have been like that. Even if Mum was watching TV [name of sister] could have been like that. So, I don’t think it would have just been isolated to ah this assisted dying process. I just think family are probably just generally aware of the ones who might be more at risk of, of reacting badly. And that was more around both of them too, you know, I didn’t want to have to remove my sister from the room.

Most whānau who attended the assisted death felt they were not informed enough about the assisted dying procedure and what would happen. Often it was only the whānau kaitiaki (person or people who walked closely alongside the person with a serious illness) who knew about the specific details of the assisted death. But sometimes, even these people felt as though they did not have enough awareness of what the process would be like.

Most whānau only met the attending medical practitioner on day of assisted death. This meant that they did not have as much information about the assisted dying process and procedure as they wanted. Ella, her sister, and cousins only met the assisted dying doctor at the hospital on the day their grandmother died and so they did not have the opportunity to find out more about the procedure and everything it involved. Ella’s cousin relied searched for information on the internet which was unhelpful:

That’s what happened to my cousin, like I mean I had… little bit of information before that because I’m nosey and I ask my mum all heaps of questions. But for them [cousins], their mum doesn’t share anything… And that’s why she [cousin] went on YouTube [to find information] because nobody would tell her. She went to YouTube and then that was just way worse than being told in person. [They did not have] prior information or anything like that. (Ella, mokopuna)

The information Ella’s cousin found on the internet about assisted dying was incorrect and this caused the mokopuna to become more distressed on the day their grandmother died. Ella shared her story:

But don’t Google it. It’s really traumatic! Like I didn’t but the day before my nan passed away then my cousin did and she told me about it and it’s so traumatising. Like [I] remember then sitting with Nan… I was like, ‘oh my God these things are going to happen,’ that my cousin had found on the internet. And it’s like, don’t, don’t, don’t research it on the internet because it tells you things that don’t happen at all.

it was like called ‘gold fishing; or, ‘gold fish necking’ or something where they like they gulp and they make funny noises… but my sister then got real nervous that, that was going to happen and so she started turning the music up really loud so nobody else could hear it but my nan was actually just snoring… Um but I, I don’t want to go researching again!!… She (cousin) watched a whole video on somebody doing it.

But she [cousin] was just trying to prepare herself which [was] good on her for like trying to because she wasn’t sure if she was going to be in the room with my nan when my nan was doing it.

So, she was trying to figure out like what to expect because nobody had told us at all, what to expect… she just felt the need to tell me and then I was like ‘wowsers,’ So, then I told my sister and then yeah. Just… And then I was so shocked I told my sister. But then it ended up being my sister who was the one that kind of freaked out about it at the time. But yeah, so it was just like, don’t Google it… or if you’re going to Google it, don’t watch a whole video of it happening, happening to someone…

[I] just think too that maybe means that people need to be educated more before it happens to their family member. Because we didn’t know what at all to expect. Like I didn’t know that the needle was going to be as huge as it was um. (Ella, mokopuna)