Hina-te-Ao Phase 3

Loss and Grief

Supporting Bereaved Whānau Through Grief After an Assisted Death

Support From Palliative Care Doctors and Assisted Dying Doctors

Duncan (palliative care doctor) reflected on the prolonged grief of whānau following an assisted death. Due to knowing (anticipating) the date of the death, the bereaved whānau may be intellectually prepared but not emotionally prepared before the assisted dying procedure because the death happens very quickly once a person has had the medications to end their life:

[There’s a slight difference [when someone dies naturally and when someone dies from an assisted death] in that ah, people have had a chance to prepare a bit more. But then the [AD] death itself happens very quickly so even though intellectually they are prepared the shock of the emotions, let’s just say the ‘intellectual brain’ is ah far ahead of the emotional brain or heart or gut or whatever you want to call it.

So that [shock] always takes a bit longer [to process]. Intellectually, they can handle it… (yeah Mum, Dad, whoever’s having the assisted death at this time), but it takes a while for the emotions to catch up [after the person has died]. (Duncan, Palliative care doctor)

Les (assisted dying attending medical practitioner) described how he was supportive of bereaved whānau; he develops an empathic (caring) relationship with them due to being involved in the assisted death:

[Y]ou do try to keep your emotions out of it of course but I find that moment of passing… you can’t help it- you make a bond with somebody as impressive as those people. Yes, there’s a wave of emotion; that does happen with me. I don’t know how much it happens with other doctors but it’s there and I just accept it’s there and I don’t display it though but it’s certainly [there]… but it means I can at least empathise with the other people around, that they’re going through something there, yeah. (Les, Assisted dying attending medical practitioner)

Eve (palliative care doctor) reported the importance of supporting bereaved whānau:

I think they’re just the same as any bereaved whānau so we will support them in exactly the same way whether they had a natural death or an assisted death (Eve, Palliative care doctor)

Supporting Staff

Michelle (hospice nurse) was asked by the whānau to stay with them after their sister’s assisted death until the funeral director arrived. Michelle was able to support and comfort the whānau due to the whanaungatanga (relationships and connection) she had formed with Hine (person who died) and the whānau:

I did not leave the property at that point; they were quite keen for me just to say until the funeral director arrived and the funeral director was on their way…maybe half an hour or 40 minutes afterwards because they were transferring her (the plan was that she would transfer into a coffin and then remain on, on the property for the night, so she wasn’t leaving. So, they were quite you know, keen to get her out into the lounge with everybody. And the room that she was in was very little, so they really wanted to get her out into the lounge. They asked if I would stay. Which, in hindsight like it was quite hard to know what to do with myself at that point.

I’d been there for several hours, yeah. And there wasn’t really like you know [a lot I could do]. Hine had passed and I, then I really did feel like I was in- invading on, on quite private grief. I think, I feel like me being there when she had her assisted death was helpful. I think it was helpful for her, and I think it was you know helpful for the family to have a friendly face and know that there was someone there that would you know kind of, explain things to them and answer any questions they had I think that held real value… but afterwards… I did nothing nursing related. I at one point, I vacuumed the floor because I needed something to do and the kids drew me pictures and, we talked a little, with, with the kids about the fact that she had died – not in depth but we talked about it. (Michelle, Hospice nurse)

Michelle (Hospice nurse) reported on the process of the bereavement follow up call to check on the whānau. However, due to the complexity of grief this call is not always wanted by whānau:

We do a bereavement call to the person who is our contact. But I’ve never followed up with Hine’s daughter… I have extended invites for her to engage with our [support team] … we have a bereavement group and we’re looking at setting up a bereavement group for assisted death because there is still quite a lot of stigmas and in the meantime, we do one on one counselling, and I’ve extended invites via a family member… I know for the sister talking about the events of the day and going back through it has been quite helpful for her… it was, it was very peaceful and she [Hine] looked peaceful and we kind of talked about that. (Michelle, Hospice nurse)

Kumarahou (kai rongoā) recalled conversations he had had with bereaved whānau who were processing their loved ones wish to hasten their death. He reflected on the role of whānau and friends to manaaki and give aroha rather than to try to influence the person with their own opinions:

And people have, said to me ‘oh they’ve just got news that one of their very dear friends has chosen assisted dying, what do we do? What do we do?’ And [I said] ‘awhi them, spend time with them’. I mean that’s the thing, it’s not for us to actually choose for someone else but if, if that’s the choice that they made, let those, those last days they have be times when they’re surrounded by love and by care and respect. (Kumarahou, Kai Rongoā)

Kumarahou (kai rongoā) reflected that assisted dying is a gift for whānau as long as they are able to come together collectively to support their loved one and to uphold their decision at the end of life. An assisted death can bring everyone together which is a healing opportunity in itself – a gift:

You know and, and so the thing is see, the gift of it. That if a person is in actual fact alert enough to be able to actually still communicate and that’s all part of [it] to use that as a gift. Often, I say to people at a tangi, the last gift a person gives is to bring everybody together. (Kumarahou, Kai rongoā)

Funeral Directors

Beryl (funeral director) commented that whānau should be given more support in their bereavement and healing after the assisted death particularly where there are differences of opinion and family tensions arise:

I mean the, the immediate family could have somehow been given or empowered to provide an avenue for their… all of the different facets of, of the conflict that they felt… the family conflict you know, between things that happened and the impact within, within a family. As well as… the philosophy sort of surrounding the taking of life or the, or the giving up of, of life. (Beryl, Funeral director)

Chaplain Support

Beryl (chaplain) discussed the importance of prioritising the needs of the tūroro first and then providing spiritual support to the whānau. Caring for whānau and supporting them to process their grief following being excluded from knowing about the assisted death took compassion, patience and an impartial and a non-judgemental listening ear:

[My role was] partly being able to recognise the, the common humanity and that the distress that was being exhibited – that this was not an unhealthy spirituality that was being expressed by any of the parties involved. That the emotional responses were intense. That the person who the son [who had the assisted death] had asked me to look out for had to be my priority. I wasn’t judging anybody; I was trying to provide people with some nurturing so that they could work through their own grief. (Beryl, Chaplain)

Pania (Hospice Kaitakawaenga) supported a bereaved widow in her home. She mentioned that due to being Māori the widower felt comfortable opening up her to and seeking solace in her grief:

I have experience with a lady who was grieving and she wasn’t, ah she wasn’t getting help. Or she wasn’t in a space for the help that had been offered to her. And then I went around to her house and talked to her to try [and help]. And she, she said to me… she ‘was relieved’… and she was really honest about that. She was like, it was ‘a relief’ for her to see my face… for her to let those walls down and then we had a really good kōrero and we kept the connection for a long time. (Pania, Hospice Kaitakawaenga)

Kaye contemplated the grief experienced by bereaved whānau. A sense of fear, shame and sadness can increase when whānau feel as though they need to keep assisted dying private. This is often due to the māuiui person’s need for privacy:

When it comes to death…it’s a hard basket… because emotions are in it. And emotions are horrendous to deal with. When it comes to death… it’s about shame, whakamā, fear. Because… for those who have been involved in the [AD] process, it may be dangerous for them to say they were involved in the process. Because in some whānau it might be a life for a life. And I literally mean that. And also, from a cultural perspective- matakite. And those are very real truths (Kaye, Tohunga)

Kaye (tohunga) discussed how whānau were impacted by an assisted death; she thought this was comparable to a sudden death (suicide) due to whānau not having a choice in the person’s decision making:

So, I’m seeing it from the perspective of the person, either the person who commits suicide or the person who has assisted dying. It’s the same level as doing suicide in the mind’s eye of the whānau. They’re angry, they’re furious. ‘And how, how come these people- how can they do that? And who gave you the right?’ The person did of course [have the right] (in the assisted dying) but they haven’t got anybody to hit at when the person commits suicide. But when you have assisted dying, they’ve got people remaining behind who have been a part of the act. That’s the only difference. (Kaye, Tohunga)

Beryl (chaplain) shared a story about offering pastoral care to a bereaved whānau who were not involved in their whanaunga’s assisted dying procedure. The tūroro had deliberately excluded his whānau from his decision to have an assisted death to protect them; assisted dying conflicted with their religious beliefs. Beryl’s role was to support the bereaved whānau. The tūroro’s decision to exclude the whānau hindered their healing:

This, this gentleman had been given a terminal diagnosis and had a number of questions… I mean within the 6 months [his illness] was going to result in unnecessary suffering for his family. Yes, it was cancer, it was cancer. He opted for assisted dying and it was approved. And I didn’t have anything to do with that process. But what I did have to do with was his concern for his mother… this is where I felt that I wasn’t crossing any of the protocols or boundaries that I’m restricted by in terms of my chaplaincy role. Right, and with the terms and conditions of my employment… So, I didn’t feel as though any of those boundaries were being squeezed or restricted because this gentleman is very concerned for his mum who had a, has a strong faith and he was worried about his physical health and… her ailing condition.

And he didn’t tell her, didn’t want her involved in what was happening, what was going on. Now she had lived for many years up, near the [name of forest] and she had a very strong spirituality that was very [religious] in its expression but, but rather more attuned to the natural world. Now she didn’t know what had happened to her son until after the event. He didn’t want her to know… the woman’s daughter, his sister, was extremely angry. And I had to try and, support, those two, not so much his wife who had been part of the process.

What I found the most distressing in all of this… was the degree to which, out of the best will in the world this man had for his mother’s well-being, the, the anguish that she experienced after the event. [It] was such that if there had been a careful recognition of how things might have been handled, I believe that she would have been helped through the process a lot more holistically… The, the daughter had ah, strong Māori connections. The, the, the, the man who had opted for assisted dying, was, not really connected with his whakapapa. He acknowledged that it was there, but it had not been a part of who he was. (Beryl, Chaplain)

Beryl (chaplain) acknowledged her role in supporting bereaved whānau who are excluded from knowing about the assisted death. Due to a mother and sister not being informed about their son and brother’s assisted death until after he died, Beryl had to help them process their grief. They naturally felt angry not knowing about the assisted death until after the man had crossed the ārai. The strained relationship between sister and brother and the elderly age of the mother made the healing process much worse:

But when [sister] did find out she came to see me… [and] she confronted me because she thought that I was, I was holding knowledge that I didn’t have. And at that point we were able to sit down and speak quite freely about the manner in which he had chosen to die and the lack of information that was being made available to family. So, she was really angry about the whole process. It was very difficult for her, to, to try and work out how on earth she was going to help her mum.

So, in the end what, what we did was I spoke with the mother about the grief that she was experiencing at the death of the son without saying, that, that this had happened. I just talked about the ways in which illness can affect us spiritually, emotionally, mentally, socially. And [I] listened to the mother; my job is to listen. You know and in some ways that’s a real advantage because I wasn’t having to put forward anything that wasn’t going to be reassuring for her…

… but with that situation, with the mother at the age she was, it was about providing her with the, the solace and the comfort that her son had lived well and he had reached the end of his natural life[and] that his body had given up on him but the relationship with [him] never be broken…Because [the love] he had for her, which was real, and he was really concerned for her. And the love she had for him was something beyond time and space. And that was really how I put it. I didn’t know how else to do it. (Beryl, Chaplain)

Michelle (hospice nurse) reflected on the way people grieved differently in the whānau after an assisted death. She noted that Hine’s [deceased woman’s] sisters stayed in the room and prepared Hine’s hair after she died providing further dignity in death for her sister. And Hine’s former partner and Michelle assisted in preparing the tūpāpaku for the funeral directors. Michelle was supportive of these different grieving practices however, caring for the tūpāpaku was everyone’s priority:

Hine’s [former] partner…stayed in the room and a couple of the others; she had three other sisters who stayed in the room and they kind of were all quite supportive of each other. They, all grieved quite differently. [One sister was] quite pragmatic then she was on to the next, the next task… she kind of like was ‘okay, well we’ve got to do this and this and this and this.’

Then everybody kind of disbanded and me and the [former] partner just helped get her nice and flat and tidied up. Hair – did her hair nicely and yeah got her all tidied up and then the family just came in and took turns [with Hine] I think just to privately (or a couple of them) at the time just to sit with her. (Michelle, Hospice nurse)

Funeral Directors’ Roles After an Assisted Death

Charlie-Chan and Bella (funeral directors) discussed how upset they felt for whānau when tūpāpaku were not cared for properly (not placed in a mana enhancing position) either before or directly after the assisted death. Charlie-Chan thought it was upsetting for whānau if their loved one was not positioned in a dignified way, as rigor mortis could set in before the funeral directors arrived:

Charlie-Chan: Sometimes… they’re not very careful [assisted dying doctors] about how they put the person [position them] physically you know. Sometimes when I’ve been to these assisted deaths and the person’s passed away in quite a funny shaped chair. And the worst part [for] the whānau is the way that you have to lift them up and put them on the gurney.

Bella: Difficult isn’t it Charlie-Chan?

Charlie-Chan: Particularly if it, if it’s a case where the funeral director’s not rung [to uplift the tūpāpaku] for some time and rigor mortis is setting in. It can be quite indignant because what you have to do is lay them down flat. (Charlie-Chan and Bella, Funeral directors)

Jedi and Tuna (funeral directors) discussed the cultural and spiritual protocols they provide in their service to support whānau:

[W]e always begin with hugging- hugging and kissing everyone. Yeah, I guess that that’s my approach always… and because we’re quite connected to our community people know [us] and they’ve talked about you know… We will stand back and you know [we] ask, ‘do you want to do karakia before we- you know take your loved one?’ And then we don’t rush it. (Jedi and Tuna, Funeral directors)

Charlotte (funeral director) reflected on her role was to care for the tūpāpaku and carry out the deceased person’s wishes but sometimes things did not go as planned:

Yeah, I eventually got around it [the newness of caring for someone after an assisted death] by telling myself, ‘You’re there to care for him.’ After [AD’s] taken place, that’s what I’m there for, and to carry out his wishes. And because he had a daughter, [to]… make sure that those things were in order you know, so. (Charlotte, Funeral director)

Petal (funeral director) felt awful after hearing the news that the assisted dying procedure did not go ahead because the doctor could not get a line in the man’s arm. She was shocked to get a call from the whānau not to come and uplift the tūpāpaku as the assisted death had not occurred. Petal said she did not blame the AD clinician but was surprised that these sorts of issues had not been identified earlier. Her services were used one week later:

It was terrible for us as funeral directors. I mean we were friends; I knew him… And so, it was awful… we were waiting for her to ring us say 3 o’clock in the afternoon or whatever to say, ‘it’s happened, come out and get him’. And then she had to ring and say, ‘it hasn’t happened.’ And I said, ‘you’re joking?’ And I was beside myself. There was no words that you could use to say, ‘I’m sorry to hear about that’ or whatever; it was just, it was just a void. And its [like] ‘my God how can this happen?’ I’m not saying they’re awful people by any means but it’s how you learn- is by your mistakes. But at what cost? (Petal, Funeral director)

Funeral directors are often prepared to pick up the tūpāpaku quickly after someone dies because whānau have requested that. Petal (funeral director) commented that their services were often requested a lot more quickly for an assisted death than a natural death:

I think it’s because they’ve had the [AD] preparation of knowing what’s happening so much beforehand… (and it is only a body) and in my mind it is only a shell. So, therefore the person has actually gone. So, now we have to get prepared for the burial of the person. We don’t have to go through the sitting around with a casket crying and what have you. We’ve done all that while the person was alive… not that we wanted to pick… pick him up early.

The family wanted the process to start earlier rather than [later]. Normally, if it was a Māori family or European family ah they’d say, ‘oh can we have another day?’ or ‘can we you know, have a couple of days?’ or whatever and I’d say, ‘Well, you know, just depends on what they’ve died from. If you’re wanting us to treat the body which some do, (some don’t) and we follow whichever I said. So, we’re going to have to make sure that that person’s (tūpāpaku) doesn’t deteriorate anymore. So, we’ve got to be able to put in place ah the process of, of, hygienic treatment if you’re going to want the body back home… or you’re going to want to take it to a public place which is the marae or however, whatever.

We don’t want, the family or the people… (the mourners at the funeral) to have a bad experience because you know the lid’s off the casket and you don’t want them deteriorating before your eyes…[if] it happened at 3 o’clock; we probably (9 times out of 10) we wouldn’t have gone until the next day but they wanted them gone pretty smartly. (Petal, Funeral director)

Jedi (funeral director) acknowledged that whānau who are disconnected from their Māoritanga may have different tangihanga preferences than whānau who are connected to their hapū, iwi and marae:

When they’re ahi kā I would guess… if they’re living in the suburbs, they may be more disconnected. But when they’re like- when they’ve grown up here [rural area]and, and all they know is- you know if they’re ahi kā, then, I, I would say that they are more [going to] follow the tikanga Māori. Because a lot of our people do still take their loved ones to marae. That’s still yeah quite common. (Jedi, Funeral directors)

Funeral directors often organised funeral arrangements before the assisted dying date. David (funeral director) commented that grief can become more complicated when the tūroro and their whānau have different perspectives about assisted dying. David thought the distressed emotional responses of whānau who were grieving for a family member who had an assisted death were more similar to a sudden death rather than an expected death:

[W]e looked after [someone] from the [aged care] home; we were there very quickly. The instructions from her was to be again, [be] uplifted. We were there when the doctor was there because the family- they just told us over the phone ‘look Mum’s chosen this, this [AD]. We need you… there’. That’s fine we were there. When we got there the family seemed a little bit shell shocked. And she [mother] was to go from the home into the funeral home. We washed and redressed her; she was in the casket and then she was buried all within about two hours of the assisted death.

So, we had everything prebooked. I got to the cemetery, I carried her across; it was only the immediate family- so sons, daughters and grandchildren. We placed her in the grave, and they had a wee sort of committal type service. And I stood back, and I looked and I thought ‘I haven’t seen this sort of grief for an elderly lady.’ She was older and expected to die. In this sort of scenario where [there is] someone older and would be expected to die I said ‘… this looks more like [grief for an unexpected or] a sudden death’ you know! The grandkids were absolutely besides themselves.

And I went over to one of the sons and I said, ‘can you tell me how you guys are going? Can you tell me a little bit about [it]?’ And he just shook his head and said, ‘we shouldn’t be here; Mum shouldn’t be in the grave’. And I said, ‘tell me a little bit more because my understanding could be different’. And he said, ‘Mum chose it, but we didn’t get any say’. And he said, ‘if it was our choice’ (and all the children were agreeing) ‘we didn’t want her to die this way, we wanted to be there and care for her…’ (David, Funeral director)

Nui (Hospice nurse) explained how five Māori kaimahi in the service came together to. whakawātea the hospice room after a tūroro left the premises to have his assisted death elsewhere. They sang waiata, karakia and performed cleansing rituals to clear the hospice space highlighting the significance of tikanga and kawa after death:

[O]n the day that Tama [tūroro] left, to go and be with whānau, to have his assisted dying I reached out to our [Māori kaimahi] rōpū in the chapel and then yeah there was demand on all of us for our time but that, that was really significant… We went into his room and did karakia. And one of our wāhine blessed the room and… that is also linking to you know if, if we’re thinking about, that is within our collective that is our strength into wānanga, and that very much came through from mahi a atua. So, I knew, we can’t be alone, today, we need to come together and acknowledge this and so we all hugged and, and, and really sharing that and that awareness that was really beautiful. (Nui, Hospice nurse)

Gypsy (hospice kai whakahaere) reflected on contemporary ways whānau apply whakawātea during tangihanga:

I think we have a lot of self-appointed mātauranga Māori, rangatahi Māori around who kind of disregard what our older people [want]… there’s this thing about what they think is right and wrong and I was never brought up with the right or wrong. I was always brought up with ‘it just is.’ There’s no right or wrong – we’re always on a continuum to learn more and do better. So, yeah that right or wrong concept is, is, is a challenge to understand but definitely a younger generation can be quite critical of our older ones, maybe who don’t speak as much reo as them now or, we have this thing about putting water at the doorway, you know.

And when I grew up water was never put at a doorway. Because we always, knew that these were our loved ones, and they were never going to do anything to us. But as the [name of region] trend has come down water has become very significant in doorways. And I, I feel like our younger generation have adopted that as well. Whereas my generation and above, water was not necessary…, until the very end, ‘til they’ve been gone in the urupā and then we washed as we left the, the, the urupā. (Gypsy, Hospice kai whakawaenga)

Funeral directors discussed how they followed the same whakanoa processes following an assisted death. Charlotte recalled:

When I transferred him [tūpāpaku] from home, I brought him into our care. [I] cared for him. He was for cremation. I transferred him to the crematorium; can’t remember which one. When I transferred his ashes back into our care, I called the kaumātua and then I put the ashes into our viewing room. So, we have a viewing room where whānau meet.

And then… matua [name] came through and both him and I went into the room, and we had karakia. Before he left our building we spoke; matua [name] spoke to me about how it was going to go today (when he was picking the daughter up and where they were going)… he left the room, him and I had karakia, you know, for our deceased [and] for the travels out there, for the day. (Charlotte, Funeral director)

Funeral directors support clients who wish to gift their parts of their bodies to enable others the gift of life (or donate their whole tūpāpaku to science) following an assisted death. Charilie-Chan (funeral director) recalled a tūroro who had been approved to donate her body to a medical team after her assisted death. Charlie-Chan said this was organised by the tūroro before she died. It involved a multidisciplinary team working together including the assisted dying attending medical practitioner, clinicians and the funeral directors:

She made all the arrangements. She prepaid [her funeral]; she told me after all that, that she was donating her body to science. And that had already been approved by …medical team. I went down there when she passed away. I was there… within a short period of time. I had to call in the funeral directors to take care of her, that would assess her finally to whether she was acceptable for medical science (of her body) and she was. And they took care of her thereafter. (Charlie-Chan, Funeral director)