Episode Transcript
[00:00:04] Joe: Hello everybody. Welcome to this introduction to season three of the Great Ormond Street Paediatric Bioethics podcast. My name is Joe Brierley. I'm director of the Paediatric Bioethics Centre at Great Ormond Street Hospital. I'm the host of these pods. With this third season, we've attempted to focus a bit more on how clinical ethics support to childrens' medical teams, children and their parents has developed over time and focused a bit more on some of the legal issues and maybe practical issues in a more global sphere that people are thinking about in developing that support as paediatric medicine gets ever more complex. We also have some specific episodes focused at very hot, ethical topics such as organ donation and transplant in small infants, and I really hope you enjoy the season and please feedback.
They're available wherever you get your podcast from, and we'll be releasing them every two weeks. Thanks everybody.
Hello everybody. Welcome to the next Great Ormond Street Paediatric Bioethics podcast. I'm very excited to introduce our next guest all the way on the other side of the world. Fiona Miles is an intensivist to Auckland in Starship, but Fiona we're gonna go through your interest in ethics and your ICU career, but firstly, can you explain who you are, what you do, and I know you have a special thing you'd like to introduce the podcast with.
So over to you, Fiona.
[00:01:33] Fiona: Kia ora koutou katoa. Thank you very much Joe for that very nice welcome. It's a great privilege to be invited to speak with you today. I'd like to open with a Karakia, which is a Māori, really an ancient chant, which invites the ancestors into the space to create a safe space for us to speak into. And we would always open our meetings and close our meetings with this so that we feel safe to speak and that people can be truly open and honest.
So I'd like to invite the ancestors,
Whakataka te hau ki te uru
Whakataka te hau ki te tonga
Kia mākinakina ki uta
Kia mātaratara ki tai
E hī ake ana te atakura
He tio, he huka, he hau hū
Tīhei mauri ora!
What that means in English is,
Seize the winds from the West,
Seize the winds from the South.
Bring calm breezes over the sea,
Let the red tipped dawn come with a touch of frost,
A sharpened air and promise of a glorious day.
Behold, we live.
Now, I'm also aware it's nighttime in your place, but it is daytime here and it is sunny here in New Zealand.
[00:02:38] Joe: Wonderful. Thank you. That was definitely the best introduction we've ever had to this podcast. And yes, it's dark here and has been rainy and cold, which has been a strange thing for us in summer. But anyway, Fiona, this is great. But first I'd like you to tell us about yourself a bit and your interest in ethics, and then we'll come onto a bit more about Māori culture and how that's influencing your work.
[00:02:58] Fiona: Yeah. Thank you Joe. So I'm a paediatric intensive care doctor in Starship intensive care. We have one intensive care unit for New Zealand and we look after all of the sick children here. I became interested in ethics when I was at med school before the days of computers, when we had to use books. I was sitting in the library and I was supposed to be studying anatomy, and I came across Aristotle's ethics and I sat down and read it cover to cover and it made so much sense and it was so fascinating. And I think that was the first time I really decided this was something I want to explore more. And in intensive care and through my training, I'd sit in rounds and people would say that we should do things, and I used to question why we were, say, think some things we should do. And it seemed very random. So I thought I should actually educate myself a bit more. And so I went and did a diploma, professional ethics, and a postgraduate diploma in ethics. And I've just submitted a PhD fairly recently.
But I've been involved in ethics work for a long time, and really, the whole point was to give a structure to make more robust decisions because we are making really important decisions within, for Whānau families. And, I really love the deeper thinking about what we should do and what drives us.
I'm now the deputy chair on our hospital ethics committee for Auckland and on the National Ethics Advisory Committee, and I've been running sessions in our intensive care for a long time, particularly to give nurses a voice and to help people understand how we should make decisions and what sort of things we should do. Emphasising that everybody's responses are valid, and that's an objective process where we have multiple perspectives. So, I think it's always going to be important for me that everyone's voice is heard, and I think ethics helps you, it gives us ways through and it gives us a robust process I've always valued.
I think having a robust process of making sure everybody feels heard, that people really understand how and why we make decisions, and that it's not just your subjective view, but there is actually, really, a good way to help you and making sure that the multiple perspectives means that we are making really good decisions with and for our Whānau, which is really what we're here to do. Plus it's fascinating to hear different perspectives and it stops you being I guess arrogant and believing yours is the only way.
[00:05:09] Joe: Wonderful, I mean it’s a great way of summarising ethics, let alone different approaches to it. But that ability to hear other voices and give them the space in the room that's super important in everybody's work. And I guess, now I've got a really tough ask for you. So for many people here that they will be very ignorant about Māori culture and have maybe some idea of some of the sporting elements to that, but maybe no idea of the deeper, part that it might play, but also, it's a big ask, but could you introduce us a bit to Māori culture, how it works, and how particularly the ethical approach that we'll come onto has come from the Māori cultural view of the world and how it works.
[00:05:49] Fiona: Yeah. Thank you for asking me to do this.
First of all, I'd just to acknowledge that I'm not personally Māori and to speak for Maori is something that I, do that with some hesitation but I'm certainly willing to share my understanding of it. So Māori, the Tangata Whenua of Aotearoa, of New Zealand, they're the people of the land. They're our indigenous people. And Te Ao Māori is the Māori worldview and the fundamental part of this is that we look forward to the past rather than looking forward to the future. So the past and the Tipuna or their ancestors guide us. So everything that has come before is in front of us and leads us through.
And this is based on Matangi Māori or Māori wisdom, which is gifted to us from the ancestors. Elders in Māori hold the knowledge and are revered and it's believed that there is no knowledge that's not already known. There's nothing that is truly unknown or new. All knowledge is known and it reveals itself to us when we need it.
So the Tipuna will always be there and guide us. Tikanga Māori is refers to Māori protocol or ways of doing things. And that's different for each group or Iwi in different parts of New Zealand. But there is shared concepts of what is important. So Tikanga is about privileging a Māori worldview, which upholds practices, which are ancestral and historical.
And the fundamental difference between Western ethics and Māori ethics is the focus on the collective over the individual and overarching responsibility to our communities. Western Ethics focuses on autonomy as a very sort of major tenet, but tikanga means we move away from individual autonomy and best interests of individuals, and who should decide things, to supporting the Mana or the prestige of each of and the collective benefit. So it's a wider explanation. It's very much a collective approach rather than just being about your individual autonomy. And I think that's something that's essential for us in Aotearoa.
There's some central concepts. So the most central ones are Tino Rangatiratanga, which is the right for Māori to determine their own path. So I guess that's as close as they get to autonomy. But it's not for Māori as individuals, it's for Māori as collective and anything that is good for Māori, as good for all. So it's the idea of, similar to equity, you fix equity issues for one group, you will help everybody.
It's also based on Aroha, which is compassion and empathy. Sometimes it's translated as Love. And Whanaungatanga, which is incredibly pivotally important. So Whanaungatanga is about relationships. It's about when we meet people, we don't ask what they do, which is what we might do. They will say how, who do you know? Where is your Whānau from? Where's your family from? And you try and you build a relationship before you try and do anything else. So once you've made connection and you've built a relationship, then you can trust the person. Then you can have conversations. To launch straight into conversations without making relationship first doesn't work.
Manaakitanga, welcome. Everybody should be welcomed. Collectivity, that's Kotahitanga. And really pivotally important is Wairuatanga, which is the focus on spirituality. And I think that's an aspect that is sometimes overlooked in our Western medical systems. There's a very beautiful Ted Talk YouTube talk by Moana Jackson, who's one of our Tohunga, one of our Māori scholars who gave a really good talk about Māori research ethics, and he talks about these concepts and need for honesty, humility, imagination, courage, adaptability, those sort of things.
And Te Ao Maori's beautiful has beautiful imagery, beautiful concepts, and I think it has a lot to teach our world.
[00:09:32] Joe: Excellent. That's a really good summary for us to give us an introduction maybe for many of us to that Māori culture, but also how that thinks about the worldview.
I think when we met a few weeks ago at the ESPNIC conference, we talked about the similarities with the Ubuntu, that South African approach. And there are similarities from older cultural approaches around the world rather than that western autonomy, dominant approach really to bioethics.
So I think it's really useful to speak to other people and tease that out. One of the things I find most interesting is how you've brought some of these concepts into a children's hospital, which, in 2025, where we currently are, is rather dominated by high tech treatments and what we would see in our Western canon as innovative or new treatments, developing drugs or new equipment.
That concept of there's nothing new, but it's being revealed and how that works in the hospital itself. Could you go there and maybe start talking about that a bit, Fiona?
[00:10:30] Fiona: Yes. Very happy to do that. Obviously big white institutions still have a long way to go and ours does too. But in our children's hospital, there's been a real attempt to address some of the inequity.
We know that our Māori and indigenous people are, much worse off on all aspects of health determinants socioeconomic privilege, and that's largely a result of colonization and historical trauma. Land loss, a whole lot of things that I think are, common across our Western worlds.
And there's been several attempts to address in lots of different ways. We've had a particularly inspired group of people in one of our directors of Māori Health who sadly died very young, Tony Shepherd, was very instrumental in leading this charge. And there's a whole lot of aspects we've done.
The first is to ensure that today that Māori language is heard and respected. Now Māori are very strong and very united, and keeping the language as central part of culture. In embedding Te Ao and Tikanga practices which is protocol practices into our everyday work has been a really big part of this.
So we would open all of our meetings as I did this morning with a Karakia, and we would close. Some meetings will open with waiata, which is singing and we get everybody to sing the Māori waiata. And that's, incredibly uplifting and puts you in a good frame for that. We introduce ourselves with pepeha, which is where you do an acknowledgement to, for Māori, it's their mountain, it's their river, it's their lake, the places that they come from so that you can connect with your Whanaungatanga, and make your relationships. If you're not Māori, there are different versions of pepeha are where you talk about your ancestry, but that's about making sure that people know who you are. So that's, an important part of a formal process. We often are having meetings with large whanau. We will have 60 people in the room sometime, and we will follow a formal tikanga process, which is offering Karakia, ensuring everybody is introduced and being open about different ideas. In PICU, one of the really innovative things that's happened is we have a Ringa Atawhai team, which it's, the idea is to have a culturally responsive team. And we have a specialist nurse, social worker, a cultural specialist, an allied health specialist, and a mental health specialist. And they look, after our Māori whānau. Ringa Atawhai means hands of kindness or nurturing hand of support. The idea that this is a, it's a Mokopuna centric, whānau focused, whānau is family, and whānau led model of care. And what the Ringa Atawhai team has been doing for the last year since they were introduced in March last 2024 they've been guiding our Māori patients and our team to help care and their knowledge and approaches has a positive effect on all of us. So there's a much greater sense of collectivity, a big focus on empathy and caring and reminding us that equity for one is equity for all. So it's helped improve our understanding of Māori processes. Actually, it makes us feel like we are far more effective on our work. We've also had other things across the hospital, the UK medical mediation team have been running our skills teaching and we've adapted that in part to ensure anything that comes into New Zealand needs to be adapted to make sure it's culturally appropriate to our setting.
So we've adapted that to our Te Ao Māori principles and all of our policies go through, a critical Te Tiriti o Waitangi, Tiriti is one of the founding documents between the Māori and British government. And we need to make sure that is giving Māori final voice and ensuring that is true.
[00:13:57] Joe: I can see the generic approach there, you bring into meetings and the culture and being responsive and how teams are set up. But can I take you to the bedside? So how was this influential in, I don’t know, let's move it away from the ICU and some of the hardest decisions might be about either the ones we face are about, young people's decisions about chemotherapy or deciding about parental nutrition in children with severe brain injury.
Some of the hardest are about rare disease, innovative therapies and trying something that might not have a very strong evidence base. So that's the things we might encounter in our ethics meetings in our hospital. How would that interface with decisions by the bedside, the kind of the Māori cultural aspects you've talked about?
What does it mean to the clinician and the family and the child by the bedside?
[00:14:48] Fiona: I think the central principles in modern medicine really are very no different from ancient principles. Hypocrisy emphasised that we, cure sometimes heal often, and console always, and it's easy in our busyness to move away from that. And I think we have always needed trust, compassion, empathy, fairness, those are principles that we all need. And our families want us to be honest. They want to trust us. They want us to be good at what we do, and they wanna know that we really care for them. And Te Ao Māori Principles centre these, that is what it's all about, it's all about Manaakitanga and about caring and about trusting the ancestors will lead us. So it's a reminder. It takes us back to that Wairuatanga. It means we acknowledge the trauma people have gone through the things that people bring to their situations, and it means that we take a step back and try and understand rather than going into fix without actually an understanding.
And part of that is for us to check our own bias thinking, why do we respond like this? And I guess, we know that if a family's very stressed at the bedside and we know that if you're a young Māori Dad who fires off, then you're more likely to have a security call than if you're a older white man. And that is really from bias. So I think Te Ao Māori principles are that about hierarchies about making sure that we are really getting to terms with what is going on with our whānau, but also to understand that there are some things that we don't understand. That people have very strong beliefs and that their reasons for not wanting certain treatments may be tied up with Te Ao Māori principles or to do with something that has happened before that we may not understand. And so it's that culture of humility and awareness. And I think that when there is an openness, as you start to become more open and start to get a little bit of an idea of what these concepts are about and you embrace them, then you relax into it. So you're not trying to force people into situations. And I think a lot of our ethical dilemmas or the situations that come to us in our ethics committees arise because of tensions where people have not really listened or not really understood.
[00:16:50] Joe: Yeah, I'd echo that. Maybe it's a podcast in ethics about some challenges as you'd expect. So in my head I can see that this is a single, massively important culture with lots of backdrops to maybe empire and how people were treated and that awful stuff that we're learning more about. But I try and always take things into a, maybe my own world, which is easier in that we work in a very diverse city with many cultures. And so one of the things I did want to talk to you about is what's it like for someone who's not from that culture? Do you ever get any opposition. Why are you talking about this with my child? That's not part of who I am. And I wonder how that challenge operates and also not necessarily just families and children, but maybe other clinicians who say this is not my world. This is not what I do. And how would it look to have different cultures coming at the same time. It's one of the things that I think we sometimes, not struggle with, but find, quite enriching and we learn a lot about different cultures, but we can't adapt them into different frameworks with different children in some ways, you're seeking some sort of moral, not truth, but a way that we think is reasonable to treat everybody. A lot of things you said were very attractive about how that culture can be used to develop our improved ethical understanding for everybody really. But I wonder, do you have any tension at all between those who don't see that as their way forward?
[00:18:18] Fiona: Yeah, look, there's always challenges and it isn't always easy and we do get it wrong and families are all different. So we need different approaches. In our Māori community, everybody is different, and sometimes what people want just is simply not possible.
In terms of the tensions, yes, we have racism in our country as all countries do. And at the moment is not exactly supporting that. The important thing for us in New Zealand is that Māori, Tangata Whenua, they're people and we have obligations under our Treaty of Waitangi to our Māori whānau. So that does make the situation different from other groups, and also different from your setting in the UK and Europe. However, I think a lot of the tensions arise from fear that somehow if we prioritise Māori, then they will be missing out. And I think that's about white privilege and white fragility. We do want to connect with all of our patients and with all different groups and we want to learn from them and all the groups are different. And I think one of the things about the Te Ao Māori concepts is that they are fairly universal concepts. The need for us to be truly human goes across all groups. We need to be guiding people and I think that means we need to be actively leading a lot of the time, particularly in intensive care, but we need to be really honest about what works and what's possible. And we need to have trust in our families and the central concepts of, actually wanting what's good for everybody wanting to really connect at both a spiritual level and wanting to create relationships. Those are not specifically unique to Te Ao Māori, but Te Ao Māori just actually puts them as the priority over autonomy and things, which we do. So the the emphasis is different. Once you start thinking in these terms and being open to that sort of more holistic approach, that's gonna work across all groups. And I had an interchange with one of my colleagues on email who actually then came down and talked to me and he said I do the best for all of my patients and, I don't think I do a bad job for one group, and why should I do this? And I said it's not about doing, poorly, it's about actually having that self-awareness that we do need to be open to different cultural ways of doing things. If we are feeling challenged by this, we need to question where that comes from. What is making us feel challenged? And one of the really nice things about Te Ao Māori is that it you feel very held. The culture holds you. Concepts are very collective. Everybody is included in this, in its best sense.
So when you are part of that, you realise it's not all on you. You are not the only one making decisions. You're doing it with people, you're doing it together, and you feel very connected to people. And that goes across all cultures. Everybody wants to feel connected and wants to feel supported and wants to feel cared for, and to know that you are really putting what they need in every sense forward. So it means you are more curious, you are more open. But yes, we definitely have racial tensions and that's often from the people with the greatest privilege. And that's that's about education and it's about us educating in a way where people see the value.
So for our families that come and meet our Ringa Atawhai team, or part of our Ringa Atawhai team, they comment on how supported they feel. And I think that you've gotta show value. And there will be challenges. And certainly that's in recent times with changes in political world, political climate, that's become a real tension and our family's really struggled from that. So it's not easy, but it's the start. And, one of the things that Tony, my dear friend said to me, said, you can't be an uptight white girl in a hurry. You have to plant the seed and the seed will lead and the Te Pū will guide you. And that's really what we're doing, isn't it? And I think that's what we doing in all the times.
[00:21:55] Joe: Very nice. Very nice. Yeah. That's a very nice response to that. Fiona, that's been a fascinating run through a very big area and a really nice introduction for many people.
Many of our listeners won't have heard very much about Māori culture and I think some really good generalisable ideas there, which I think is super helpful. But it's just for me to say thank you so much for joining us and I know it's early in the morning there and late in the evening here. That's one of the great things about being on the other side of the world. But thank you so much. Was there a final thing you'd like to say at the end of the podcast?
[00:22:28] Fiona: Yes. So having opened, invited the, to join us, we need to let them go again. So we need to close with the, also . Thank you also for giving me the opportunity to do this.
It's something that I feel very strongly about and I really appreciate this opportunity.
Unuhia, unuhia!
Unuhia ki te uru tapu nui!
Kia wātea, kia māmā, te ngākau, te tinana, te wairua i te ara takatā.
Koia rā e Rongo, whakairia ake ki runga.
Kia tina! Tina!
Hui e! Tāiki E!
And that means:
Draw on, draw on! Draw on the supreme sacredness to clear, to free our heart, the body and soul our pathway, prepared low. There is peace suspended, high above manifest. Draw together, affirm.
[00:23:10] Joe: Thank you so much. This has been the Great Ormond Street Paediatric Bioethics podcast. I'm Joe Brierley, your host.
My guest has been Fiona Miles. Thank you very much. See you next time.
[00:23:20] Fiona: Thanks.
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