What I think you’re contributing to, is a project which is helping us to demystify or to lessen the fear around the subject of death. I think most of us have some fear at some point. I like to think I haven’t, but when my time comes, and if I’m faced with a life-limiting illness, it’s not to say that I might not wake up at 2am one morning and be running with cold sweat and fear, because I’ve slipped from my wairua space, or my protective bubble of knowing and trusting in my atua and tūpuna, into a more egoistic, worldly space of forgetting who I am for that moment.  So good on you for doing this.

Have you heard of Allan Kellehear? He’s an Australian sociologist who writes and speaks about Compassionate Communities. He’s saying, what we really need are compassionate communities, because at the moment, the model we’ve got is the palliative care model and pretty much this provides an acute service. Hospices with beds can accommodate patients for respite or to get to the nitty gritty of a tricky health issue, but they can’t support everyone. Kellehear says that what they’re trying to do in the palliative care space is to add more things on, because it’s not whole enough. So that’s where you get adding on the psychosocial, the spiritual. But he says this approach is still external to the communities that we live in. So what we really need is to strengthen our communities, which is what he calls Compassionate Communities. There is an international movement now.

There are other models out there. In my Māori Indigenous speak, I would say it’s probably going back to the pā, back to the communal, collective lifestyle and community that we used to have, where when something goes wrong, somebody comes over and shares what they have with you. There were particular tikanga (customs/rituals) and kawa (customary guidelines), around how people were cared for. So, I wonder how might compassionate communities actually look, and how can we all contribute to that approach?
If you asked me what relevance this has to Māori, I would say that, in the interviews I’ve done with people who are ill and dying, the stories that they tell me and that their whānau (extended family) tell me, fall into two camps. There are those people that were raised with their traditions, and they often have this whānau that wrap around them. They don’t have to think ‘What’s going to happen to me at the end of my life?’ or ‘Where am I going to go when I die?’ because they know that it’s taken care of, and why? Because these rituals have been in place for thousands of years, and even since colonisation, the ritual of the tangihana (rites for the dead) has changed very little. But the problem is, a lot of our whānau, because of colonialism, assimilation, urban migration, personal choice, lack of equity, all of that historical inequity reality, have ended up not being able to retain their communities, let alone their language and their rituals, and so there are a lot of whānau around that I think actually could also benefit from having a community culture of care at end-of-life.

Some whānau are really well-resourced with enough people, good health-literacy, and soldiers, as I call them – the people that actually do the grunt work such as the day-to-day caregiving and the heavy lifting, the transporting, attending health appointments, coordinating healthcare. That takes an enormous amount of resource and capability. And it doesn’t take rocket science to work out that there is, in comparison to non-Māori, poor health equity for Māori, and lots of social issues are experienced as well, for a lot of whānau.

The Financial Cost of Care was a study that Professor Merryn Gott conducted. I was a Māori researcher on it; I interviewed 11 whānau. One of the things that we found out from Māori concerns this particular phenomenon that whānau may not have enough resources, but they are still obligated through their whakapapa (genealogical ties), aroha (compassion, love, care) and manaakitanga (caring and hosting) towards their kaumātua (elderly people), to express their cultural care customs. Sometimes it meant that they were going into debt to do so. So, in one example, a kaumātua was in hospital, and his daughter knew that when a particular visitor with a lot of mana (prestige, authority) came to visit her father, her expected role within her whānau, on behalf of her father, who was a very respected and senior kaumātua, was that she would have to take the guest down to the cafeteria and manaaki him, give him something to eat and drink before his journey home. That is the correct tikanga. She was a solo mother. She had to use a credit card, for things like that. So, when the cultural imperative to care is at its greatest, our whānau are often under-resourced to provide it.

One of the spinoffs of the stress that people are under, as I have observed, is that there seem to be a lot of Māori in their 50s and 60s dying unexpectedly. So, you’re not only losing the kuia (older women) and koro (older men), you’re also losing the next generation who carry some of the tikanga. That’s distressing for me.

Yes, it’s sad. I think the issues for Māori at end-of-life are quite complex, and I don’t want to paint a doomsday picture. We’ve got to keep the balance here. You can look at the digital stories on our website (www.teipuaronui.co.nz) because Manaaki’s story is one of those, and it’s a very good example. When Māori can bring their tikanga, their Māori knowledge, together with the knowledge of the Western health field, magic happens. Manaaki’s drew her whānau together to set up 24/7 care rosters. Awesome. So we’ve got that, but then we’ve got this other extreme, where there’s no one at home to care, or that person isn’t adequately resourced to do so. And I just think what is the quality of care for that kaumātua, what is the quality of life for that sole person that maybe left alone to care for them?
But then you’ve got to be careful, because if you go and talk to whānau, they will say ‘It was an absolute privilege. I would do it all again. I would go into debt again’. And that is mana, and mana is about status, authority and prestige. It’s about their mana, and it’s about them trying to whakamana or to uphold the mana of that other person who is dying. And it’s about the mana of the tūpuna, their hapu (sub-tribe) and iwi (tribe). And that is amazing and beautiful – aroha in action

I’ve found it interesting that I’ve never really found my place in palliative care, or hospice, so I’ve had to realise that this isn’t my field. So then I get interested in other things, other ways to connect with death and dying, so all this interests me.

You’re more holistic though, aren’t you? Sometimes I wonder whether palliative care is the Emperor’s clothes, because it all sounds good . . . We know that the Whare Tapa Whā model is being used within palliative care to uphold the balance of the tinana (physical), the wairua (spiritual), the hinengaro (emotional/mental) and, the whānau.  But in reality, when you start having a look at it, it all breaks down. It all becomes very ad hoc. I’m not saying some people don’t get to benefit from a well-functioning hospice with beautiful people and a well-resourced service – we hear lots of great stories about that. But there are other places where it’s not happening, or it’s arbitrary. Recently, I led a paper that was published about whānau perspectives of end-of-life for kaumātua. I’m using Whare Tapa Whā model to report what whānau thought went well. You can clearly see that what they thought went well sits under those four different domains. But it’s not systematic; mainly it seems to come down to the benevolence of individual health professionals as to whether health care is holistically balanced. That comes down to the capability of individuals. When we’re talking about bringing our heart out and helping someone through kindness or empathy or spending a bit more time with them or whatever, I don’t think these are capabilities you can teach someone really. I think they come from one’s personal spiritual self-development, and where one’s heart is at in terms of their own spiritual cultivation.

I think that’s one of the things about hospice that I find difficult. It seems to me very strange that there can be a kind of shying away from really acknowledging death and honouring the call of death. Hospice seems to me to be surrounded by a kind of hope and prettiness, and not a lot of openness to talking about death. I know it’s just a reflection of our society, but I still find it sad.

And that backs up what I think Allan Kellehear is saying when he talks about compassionate communities. I think he says palliative care services are basically still biomedical, and because the psychosocial element is lacking, we introduce it to plug the gap so to speak… so we have to keep adding on to get it right.

Wendy Duggleby and Rob MacLeod, and a whole host of authors did a meta-synthesis, a taxonomy of literature on indigenous people’s experiences of what constitutes good end-of-life care. We all were given a few research articles to read, and we did an analysis about what was the critical thing that meant the most to them at the end of life. And the commonality was preparing the spirit to die. The research says that when indigenous people use Western health services they find staff are not interested in ‘where I come from, the land I come from, who I really am. I can’t have my family here’. So, the things that matter to me as an indigenous person don’t as yet, have a home within this particular palliative care model – particularly, if they’re in a physical environment like a hospital.

You see, for Māori, the wairua (spirit) is at the top. Everything’s about wairuatanga, but then you have whaungatanga (connection, relationships) so that would be right up there too.

Something in what you’re saying resonates hugely with me. I think there’s a call to death, and we mostly ignore it. I love the idea of preparing the spirit to die.

I don’t know about other cultures, but I know that in Māori culture, if somebody is unwell, the whānau will often say ‘they’re waiting for Hemi to come home, or they’re waiting for Hine to come home’. So, whānau have a knowing. It’s usually not just the person who’s dying that lets them know what’s happening, but the other side let us know too, through tohu – we get signs. In one of my studies, a participant I interviewed gave me a snippet of the last week or two of her father’s life. Her role was to act as a kaitiaki or guardian regarding who would get to see her father, who was a prestigious chief. A lot of people wanted to see him – celebrities, politicians, journalists – and her job was to relay to him who was waiting at the gate. And imagine that this is a suburban house, where they now lived, outside of their own rohe. She had a beautiful story about how the ancestors came the night before he died and knocked on the door. And her mother returned home and heard what had happened in her absence and she said, ‘They’re coming to get him, and they’re letting us know’. So, yeah, I would agree with you.
Also, when you read the Buddhist scripture about death and reincarnation, they say that actually it’s the spirit that knows when it has to go. But you know, in this western, biomedical-model society, with its focus on prolonging life, we don’t know these stories. We’ve forgotten all this wairua knowledge.

And this is where my passion is. This is where I really want to focus. This is what I want to cover, to point out. Because then we get to how death can be, which is about honouring the process and its deep simplicity, and surrendering to it.

This is why I like those life stories about the Māori whānau, the community. My Mum is an eighty-eight year old kuia (elder) who does not want a tangihanga. She doesn’t want to be buried, she wants to be cremated. She wants to go to a funeral parlour without any embalming. That’s another thing that’s changing in our culture. It’s very different, what my Mum wants. And that’s the individualism coming in (what she wants versus what our whānau need to ensure our healing processes around grieving stay intact). And I say to her ‘The tangihanga isn’t so much for you, it’s for the living, because we will grieve over three days, four days intensely. We will probably argue, but we will do it all there, and it will stay there, and it will help our process’. Now that she is getting older she seems more able to acquiesce to what the whanau feels is best for the whanau.

I suppose for me on a personal level, if we truly know who we are, if we truly know our purpose for being here, if we are bringing out our true nature to help others remember who they are, what is there to fear, because by then we’ve already processed and hopefully relinquished much of the ego, which works very hard to keep us blinded and separated from who we really are. And if we do that work in our life . . .  so I think that’s really the big story behind this . . .

One of the things that has run like a warp strand through my own life, is the motif of ‘dying’. It has been there over and over again. Growth for me has been about ‘dying’, about relinquishing my own way of doing things. It’s been about going with the nudges . . .  And I do wonder if part of the long journey of this book is so that when it comes out, it will be in its right time . . .

I agree with that. I agree, and I think it needs somebody with a humbleness like yourself, and who has done the work, personally but also in the community, to be able to say ‘Hey, there could be another way here’. A lot of people are happy to speak about compassion and empathic care and all of that. But you’re really talking about the purpose of life. You’re asking people to consider what that means to them, and not to wait until they’re dying . . .

Exactly! And when we re-imagine how death can be, then all of these things affect how we live.

Of course they do. We’ll be able to live with more authenticity, and more awareness about what we’re trying to do, and our achievements . . .

Yes, and more sense of purpose and connection.
And I think, too, our own inner world directs us, and shows us when we’re dying. If we’ve done our inner work, we know when our work in the world is done, and we can just let go!

Well it sounds good, let’s just see if it is good, when it comes!

It seems to me, one of the greatest gifts this book could bring is inspiration. Let’s say somebody has just been diagnosed, and they pick this up . . . .  you know, when Elisabeth Kubler-Ross wrote her book and it was revolutionary. This could be something similar, in a very simple way of saying, ‘Have we thought about this?’  If it was me, it could be very inspirational because it could be all the things I was thinking about but couldn’t articulate, but you’ve spelt it all out. And you’ve also highlighted the problem, the blockage.
So it’s very, very, tapu work, very spiritual work. The main thing is to get it done, get it finished.

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I would love to say it got finished, but it didn’t, which is why I have published as blog posts most of the interviews I conducted.
What this not-quite book did do, though, is inspire the writing of my other books, and I am enormously grateful to all those I interviewed for their very warm encouragement.

Thank you Tess, and all.

Tess (Ngāi Tai ki Tamaki and Ngāti Porou) is a founding member of the Te Ārai Palliative and End of Life Research Group in the School of Nursing at the University of Auckland where she is a Research Fellow. She describes herself as a qualitative Maori health researcher, with a particular interest in Maori end-of-life care and bereavement.