End of Life Yarning: An Indigenous Perspective on Dying

SBS Odio is supported by advertising. Need a few minutes to reset? Great Minds is a podcast from SBS that guides you through different meditation styles from around the world. Listen wherever you get your podcasts. If someone is taken from their community and they pass in a hospital, there's little financial support to get them home once they're passed. Some of the other cases I've heard where lock-ons are actually in a mall for up to eight months because they just can't get back to community. Love beliefs is that if someone is not buried on a country, then their spirit will remain stuck and not be at home. Welcome to Grave Matters, a lively look at death. All of us at Grave Matters would like to acknowledge the traditional owners of the land we are recording from. We pay our respects to the Camaragal people and their elders past and present. We also acknowledge the traditional owners from all Aboriginal and Torres Strait Islander lands and other First Nations territories from which you are listening. A warning, this episode contains references to the deceased, dying, and sorry business. Please take care. Nadine J. Cohen, hello. Anthony Levin, Salom. That sounds vaguely familiar. It's the stands, it's close to Arabic, it's close to Hebrew. I like it. Salom. I love the stands. Yeah, me too. I love a stand. Including a minimum. You've got to have him in there. Not gonna say I love him. So Levin, what are we talking about today? Well, you know I like to go big or go home, right? You mostly like to go big. Okay, I'll take it. I want to get philosophical for a moment, okay? Okay. You can sing along with me. I'm good. You're good, okay? Among your many talents, people may not know. You are an aficionado of ancient Greek philosophy, correct? Yeah, tough. We can go with that. Socrates. Exactly. Anaxagoras. Just say some Greek names with me. I don't even know if it's a Plato. Plato, I was going to say like Galileo. Aristotle, I don't think Galileo's Greek. No, I don't think so either, I think he was Italian. He was like, I mean, you know, that same region. But you might know, you did refer to Socrates and you might know that right before he kicked the bucket, Uncle Socrates issued a dying wish. Shall I remind you? Yeah, definitely don't know this. Okay, he asked one of his followers, Crito, to sacrifice a rooster to ask Lepios, the god of medicine and healing. Why he did that is for another podcast. But this is the deity that gives us the modern symbol of medicine, the staff with the snake called the rounded, because he carried it around with him, happens to be the symbol of the World Health Organization. Some call him the god with the rod, not me. I'll be patient. I thought that's what some people called you. Oh, hey. But speaking of modern medicine, you are quite familiar with its deficiencies and you have had several close family members go through palliative care. Yes, I have indeed. Did any of your relatives make any dying requests like Socrates in their final weeks or days? Not at the final weeks or days. My mother was obsessed with me finishing uni. That was like, to her meant, 'cause I had had to stop going to uni several times when my father was sick and then my father died and then she was sick and then she was died. And to her, I think it symbolized like I be okay. So she like harped on this. And for years, friends of hers would call me like, "Are you finished uni yet? Are you finishing uni?" So she didn't have any like requests that were like in the immediate time, but that was like a thing that was a theme. And not necessarily for her either. No, but for her peace of mind, yeah. Yeah, that makes sense. I'm glad you finished uni. I'm glad I did too. Go to uni people, no dying, it's so much debt. What about you? Well, I funnily enough do remember that my mum did make a dying request and you helped me with her dying wish. Do you remember what it was? I do. What? I'm not sure I've ever told you the full story about it, though. Well, please. Your mother wanted to try a truffle. She had never tried a truffle. And you asked me if I could procure a truffle. You are known for your protrusion at all. I am refuge in my fine food delivery service. The problem was it was like Christmas Eve or like the day before New Year's. Like it was one of those two things. And not truffle season. So like it was a mission. And I like, I went to a bunch of places that I thought truffles might be at and they were not there. And she wanted a fresh one. Like I didn't want to just get her like a truffle infused something. And I finally, I rang this like fine food gourmet foreign importer of fine foods person. And I was like, I need a truffle. There's a dying woman like, can you get me a truffle? And he was like, we've packed it all of the, but like for catering for like it was news and Christmas. But he's like, if you can come here in the next 20 minutes, I can get you, like you can have one. I can take one out of the catering order. And like I like zoomed there. It wasn't like that far from my house. Like just got in the car and I just ran. And he gave me, it was really lovely. He gave me, he's like, what are you gonna, what is she gonna have a with? You can just eat a truffle. And I was like, I don't know. And he's like, he gave me like a beautiful bag of like fresh Italian pasta and like oil, like beautiful Spanish or Italian oil, like for free. It didn't make me pay for the truffle either. He was just like, you know, it's Christmas or it's news, or whatever it is. And then so I went home and I believe I made a pasta. Maybe, or a ring's a bell. Well, you, the truffle, I can't remember exactly, but then she lost her appetite. And she didn't try it. Oh my gosh, what a diva. What a diva. And but I never wanted to tell you like, this is the, the, the likes, the struggle I had getting. That is true. I actually did not know the backstory. And it's that time is such a blur that I just, you probably turned up with the thing and I was like, oh my god, thank you. And I was just a total wreck. Yeah, we did, like I did a car drive by the hospice. And yeah, I'm pretty sure I made pasta. And I'm pretty sure you ate the pasta. Probably I did. But yes, so yes, that was your mother's dying wish. Well, that is a great little anecdote. And thank you for finally telling me. In today's episode, we look at palliative care and death literacy from an indigenous perspective. We explore sorry business and the importance of dying on country. We ask, what are the barriers to accessing end of life care for Aboriginal and Torres Strait Islander people? How can we ensure that care is culturally safe? And what are the taboos around death in First Nations communities? Our guest today is sorry business consultant, Eliza Munro. Eliza is a proud mother of five and a spiritual woman from the Camilla Roy Nation who grew up on Wanarua Country. She's the managing director of a consultancy named Nihani Wanderbar and has over 20 years experience in indigenous health, including nearly a decade in palliative care education. She's passionate about enhancing culturally safe and responsive end of life care for Aboriginal and Torres Strait Islander people. And she's also a 2024 Churchill Fellow. Eliza Munro, welcome to Grave Matters. - Thanks, Anthony, for yawning with me today. - It is our absolute pleasure. - So I just want to disclaim of that. I do have imposter syndrome. I get quite nervous. So sometimes my language is not spot on, but I'll share the best that I can. But the biggest one for me is I'm not an expert in any way shape or form in anything. I've got a curious mind. So I'm never going to be an expert in one area. And even though we're talking about first nation palliative care death and dying today, and sorry business, I'm not an expert in that sense either. And I don't represent all voices, Aboriginal and Torres Strait Islander perspectives or voices. I can only speak from my perspective, what I believe in and my journey and what I've wanted to date. So any views shared today is mostly mine, but I speak generally. - Yeah, we appreciate that. And I think it's really important that people understand that you're just sharing your perspective. So Eliza, tell us a bit about yourself. Where are you from? - Okay, so I'm a good milleroy woman. So you're good milleroy for those that are not for me outside of New South Wales is Northwest New South Wales. Second biggest country, following Raradri, I grew up in Madeland though. So I'm one of a real country. So Madeland's home to me, all the families throughout. So you know, all over the place, but you're a good milleroy woman, but one of real countries is home. - Yeah. - Spiritual woman and mum of five. So one in spirit and all he are. So yeah. - And you describe yourself as a sorry business consultant, which is a term I must admit, I hadn't heard before I met you. So before we get to what you do, can you start by telling our listeners, what is sorry business? - Sorry business is the terminology that we use in our communities around practices and protocols for deaf and dying. So incorporating the lead up to someone's passing, we can incorporate that part, but we can also the actual time of passing and then the funeral practices after and the morning practices as well. So all of that can encompass sorry business, it's a death and dying for Aboriginal people. - And what does a sorry business consultant do exactly? - The term itself ends in if I can give a little bit of a background. So it's actually a made up title that I've made myself. When I came into this space, I've been doing palliative care education for quite a while, come COVID, there was some challenges there. And I thought, what can I do now, following COVID? And I was interested in desk dollar and there was a lady actually, Zanif Zago. - For Rago? - Yeah, I call it Queen of Dashies, she's beautiful soul. - Eliza is referring to a legend in the death sector named Zanif Farago, a death walker, celebrant and educator who has pioneered end of life and after death care in Australia. You may recall that we spoke about her in conversation with death tech researcher Dr. Hannah Gould in season one. - So I was looking at her training, I've been meaning to do it for quite a while. I thought that's so interesting being called a death walk. And I thought that's not really appropriate for me though, for my community. So I thought, how can I refrain that in a sense? I thought sorry business consultant because at the time, and still currently now I'm still, I'm doing more consultancy as opposed to death dollar work. So consulting for, you know, palliative care projects and organizations and services and whatnot. So, and when I say sorry business consultant, it's not palliative care consultancy. It's a bit of everything. It's all, you know, death literacy, if you know, poverty, a band's care yawning. It's anything to do with sorry business regardless of how one gets there whether it's a serious illness or not. So a bit of everything. And Eliza, when did you realize you wanted to work in this space? I think as a spiritual person, I've always been a weed even during childhood. So it's the spirituality aspect that draws me to death and dying. I've been always curious, always had a healthy obsession with death and dying for a long time. And then fueled by personal experiences, but it wasn't until I fell into an opportunity to do palliative care project work first, you know, indigenous palliative care eight years ago and it just happened to come about. I don't like to say to actually come about. I think, you know, I say a word for spirits or I was more where I was meant to be and just haven't looked back yet. And it was interesting for me coming into the palliative care space as an Aboriginal health worker because I was just amazed why had we not learned about palliative care sooner because at that stage and there's still a lot of our communities now think that palliative care is cancer and elders only. So I fell into it, but I don't like to say fell into I was guided to the position and I'm not going anywhere from the space. Yeah. I think we find that once you get into this world from everyone that we've talked to and however you come into this space and whatever nation this space you occupy, there's no out because you just, it's a calling and it is that you feel like it's where you're meant to be. You know, definitely. And I think for me, if I can add a little bit more, it's around that grief and healing for our communities as well. So when depending on how someone passes whether it's palliative or otherwise, it can affect that grieving and healing journey for our communities and it's something that if we can make those experiences a little bit softer even though people are carrying a heavy heart anyway, then at least it can help that healing and grieving. We have enough trauma in our communities never alone adding other things on as opposed to complicated grief. I know that you're very passionate about death literacy and you've said that the absence of death knowledge can really intensify, sorry, business. So what does death literacy actually mean to you? What does it look like? Every education, Anthony and the Dean, for me, education is empowering in whatever form it is. And I think if we're talking about death systems in general, the imagination can run wild, even just knowing the process of where your loved one is after they've passed away and just not knowing the processes of organising funerals or where to access support all of it is combined in one. So it's a bit of everything. And I find that for our communities, when the message is coming from within because we have that lived experience, we can relate to what we're trying to share than the message is more powerful. You would not find an Aboriginal or Torres Strait a person that hasn't been affected by multiple sorry businesses, but then also the ongoing effects around whether it's paying for a funeral or organising, you would not find someone that hasn't got a story. - Yeah, I know from my work with Aboriginal communities and clients over the years, it seems to me that sorry business is sadly just such a common feature of daily life, that it's not something that happens maybe a couple of times a year. It's something that because of both the connectedness of communities across different regions and countries, and also just the amount of trauma that's going on in community, that it's the feature that people are constantly living with. Is that a sort of accurate way to characterise it? - Yeah, definitely, Anthony. I'm going sorry business in a lot of communities, and we think about the grieving cycle, in terms of models and what not, you've got communities that get to one place, and then there's more sorry business. So constantly in those cycles of grieving, but not even getting to a point where everything's been processed. And we're not practicing sorry business, some communities I should say, not all, are not practicing traditional sorry business as we used to, where the morning periods you had to stop, you had to do the processing and the rich on the ceremony, where today, depending on where you live, it's sorry business leave, bereavement leave is what, three days, and you're expected to sort of get back to work, sort of move on, get going again, and do your grieving in your own time. It's a lot different than what we used to do. And when I say that, I'm speaking generally, I'm not talking for all communities. - Are there to booze around talking about so business and death and dying in Aboriginal communities? - Yeah, no, definitely. That makes it a little bit more challenging when we're yarning death and dying and planning head or whatever that is, particularly for palliative or advanced key yarning, and sharing our wishes. There's a common belief that if we speak of death, we're manifesting and death will come sooner. And from my understanding as well, we used to celebrate death. It was a celebration we were born, we live, and we go home, that was the death life, death cycle. It wasn't until the introduction of Christianity that the concept of heaven and hell came into and I believe that's where the fear has come in. In saying that we do have a lot of religious communities or individuals within our communities where we're different beliefs, but there is a common belief that we're talking about death and dying is manifesting. It's coming closer. And if we think about it, and there's no disrespect to my cultural beliefs, but we're all edging closer, death is coming closer for all of us. - But when you say that it was something that was once celebrated, can you elaborate on that? - Yes, and from my understanding, because it's only from what I upload so far, from my understanding, yeah, we're born, we come here to learn and then we go home. They say that in a spiritual sense, the human experience is the hardest university when we come here to learn different life lessons for this lifetime. But culturally, yes, it was something that we celebrated. We were returning to dreaming, we were returning to ancestors and it was a celebration because you were going home in a sense. - You mentioned this briefly and an earlier question. Can you explain what is Advanced K Yarning? - Advanced K Yarning is just another terminology for Advanced K Yarning. So everything we, as you know, Yarning in our communities, that's all about sharing verbally connection. So Yarning is another, I'll play it on the Advanced K Yarning, but we'd like to use Advanced K Yarning. So it's the same. The sharing wishes connecting in that sense. - And how are communities navigating Advanced K Yarning when there are those cultural barriers to talking about death and dying? There seems to be attention there. - Yeah, once again, it's not all communities. That's not all individuals. That's all, it's about individual beliefs as well. So there are a lot of, there's a lot happening across our communities across Australia where there are those Yarning circles happening and people are starting to Yarn about, you know, they're sharing their wishes in that sense. And just thinking about some of these future planning is the most important thing. You'll find you won't get a lot of Aboriginal or Torres Strait Islander people that actually will complete the Advanced K Directives or other paperwork legally. But having the Yarn is the important thing and just, you know, sharing your wishes or future plans with a couple of people within communities. So it is happening, but the legal paperwork is just an added bonus. - I wonder if the absence of paperwork ever presents any challenges when a person does pass. And whether, in fact, the legal system needs to kind of accommodate the different ways in which that Yarning happens. - Yeah, no. Actually, I think there's probably instances where, you know, we think about advanced care of Yarning and substitute decision makers sometimes in our communities we can have cultural spokesperson's, which is different to the legal spokesperson. But that's not recognised within Australian law. So there's some work to be done. There's been a couple of cases previously around different end of law. But, yeah, it does make it a little bit challenging when the systems aren't built for us. They're not built for Aboriginal and Torres Strait of peoples. And everything's so black and white, if I can say. In a sense, it's only, you know, some things there's room for movement, but not a lot. - And when you go into community to set up a Yarning Circle or deliver a workshop about dying, what are you hoping to achieve? - Most of the workshops currently around palleted care. The most benefit for those workshops is actually just dispelling the myths of what palleted care is 'cause there's still a lot of that misunderstanding of what it is so that there's barriers to access. palleted care of the word itself can be beautiful for anyone. But then when we think of palleted care for Aboriginal or Torres Strait of peoples, we just think end of life. We think that that person, they're passing immediately, that basically, but we know that that's not the case. So it's just Yarning about those sort of different myths that they can go back into community. And when we're talking in a professional sense, all our health workers and professionals that are working go into community and share the knowledge with their families. So it all beneficial in that sense. - I've heard one of your colleagues in the palleted sector, Kelly Clark, say that the word palleted is really not used in some communities. And yet it's something that first nations people have been doing for thousands of years in your own way. So if they're not relating to that word and they're not using it. And in fact, there is some fear or mistrust around what it means. How are people talking about it in a way that's comfortable? And where does that conversation tend to lead? - Yes, so different terminologies for different community. So it's not the one terminology that fits all communities. So some people may say returning to dreaming, they're finishing up. I like to use returning to spirit journey. All that person, you know, is returning to spirit because for me, it speaks to the spirituality of it, but also that's ultimately what it is. - I mean, to be fair, I think palleted of care, the word is scary for anyone, really, unless you've been through that with someone else. You know, I don't think it's a term that many people know, but once they do know, it's terrifying, and it is. It's a terrifying thing. It's very reasonable to be scared of the word and scared of what it means. - And especially something that we have been doing for thousands of years, and I often wonder, I'm trying to find out who had that role in our communities traditionally. So what was that name? Was it our healers that done that work and supported those that were passing? We had a role for everything else. We had a law and medicine men's in our healers. So who was that person? So I'm still trying to find that out. And I'm often asking when I have an opportunity, because there would have been somebody that done that traditionally within our communities, whether it was a collective of peoples or whether it was one, even with the birthing, if I can go to the other end of life, we had our Aboriginal and Torres Strait and Midwives that done all that birthing, whether it was under the trees or in the caves. So everyone had a role. So there would have had to be someone that played that role within our communities. - I'm really interested to know whether those roles might have been separated or whether a person in community might have performed both those roles, both the birth and death midwifery. - Yeah, generally it was women's business to do the birthing. So I wanted to, yeah, if that was a separation of gender roles as it probably was very highly likely, but I wanted to Anthony, I'll have to let you know when I find out. - I don't know if you can answer this, but because you've been talking about returning to spirit and returning to dreaming, I wonder if you can explain to our listeners, what does that mean for you? - For me personally, I see it as that I fulfilled my soul contract for this lifetime and that I am returning back to spirit to recover, rejoice, debrief and all those things that we do and then prepare to come back for my next lifetime. So that's what it means for me for a spiritual sense that it's the end of this lifetime and I've fulfilled all my soul contracts and obligations. And I've noticed there's a beautiful proverb at the end of your email signature which touches on the theme that you just mentioned. It says, we're just visitors to this time, this place, we're just passing through. Our purpose here is to observe, to learn, to grow and to love and then we return home. How might a belief in returning to spirit or returning to dreaming affect a person's attitude towards their own death or the dying process? - That's a very individual thing and when we're talking about beliefs, whether it's spiritual or religious and in the context of passing and returning, to dreamy or returning to spirit or finishing up. For me personally, I do like to share a lot of stories and reflect back to myself. For me, it will give me comfort. But for others, it could, depending on, you know, their beliefs in a religious sense and make it's a comfort or it may give them fear. Or it's all in the individuals, you know, life experiences and what they believe in. We can't say what it is and isn't for anybody else. - If I can share another beautiful terminology, I think is Wala Wani. So Wala Wani is, if I'm saying correct, Derek would, Derek in New South Wales, I think it's a South Coast. And it means safe journey home. We had a Aboriginal and Torres Strait on a palliative kick conference recently in Brisbane and it was titled Wala Wani and safe journey home. And I have beautiful Zah. - Hmm. - So we've talked a little bit about this already and obviously there is a long history of mistrust among Aboriginal communities towards government. To what extent do you think that plays a role in the willingness of people to access end of life care from mainstream services? - Just generally, if you think of the hospital system's segregation was a real thing in Australia, we talk about truth telling a lot of people, don't know that we had a white Australian policy. And in hospitals, we actually had the black wards, what were known as black wards. Where Aboriginal and Torres Strait people were looked after by, you know, black nurses, Aboriginal trained nurses and we had our own blankets, we had our own knives and forks and they were standing with blacks only. So if you think about the history there, you know, plays a big role. We've got a multicultural community within Australia and there's still a lot of learnings there as well. It's not intentional, but there's a lot of that unconscious bias in cultural stereotyping that's happening in our hospital systems. And then you wonder why people discharge against medical advice. - And how do you think that legacy affects access to palliative care? - There's still a lot of fear of what that looks like. The system, once again, is not built for us. If we're thinking is something is so sacred, is returning to spirit, you know, palliative care and someone passing. Some of those practices are not practical within a clinical sort of setting with alarms and, you know, small spaces for limited visitors. If you think of all those sort of elements, they're not appropriate for our sense. We're big, big communities, we're big moms, you know, big families and when someone's passing, it's respectful to their part of that process. Even if it's just coming to, you know, pay respects, say goodbye, sit down, have a laugh. The amount of people coming in, some of the hospital staff, they're aware of this. They hear this in their training, but they're not prepared as much. It's still something where sometimes you have to advocate for flexibility around what that looks like in that setting. - Yeah, I mean, I can imagine things like visiting hours are really appropriate as a sort of structure for the way that people in community might want to do things when someone's nearing the end of life. - Yes, visiting hours, you know, people are traveling into state, they could be traveling from anywhere and if they rock up, it's very cocky in the morning. And not saying that, you know, palliative gutter want to say they're not flexible at all, palliative care staff, but they definitely are, but it's just, sometimes if it's multiple people's, it can be, you know, a little bit challenging and you've got other patients within, you know, that are doing their sacred business in their returning disparate journey as well. So it's just being mindful of all those that are around. - Eliza's comments about navigating hospice care as an indigenous person pointed to a broad attention in palliative environments. They're often designed to be these quiet, solemn spaces. So how can we reconcile the needs of communities with large families who want to visit loved ones at the end of life, but who also need a place to yarn, perform rituals, or even celebrate? - I'm thinking about, for example, the stark difference between, say, the very state and somber Jewish funeral at the Hevary Kedisha, which we're both very accustomed to, and the minion afterwards in the evening, which is often more raucous and a lot of talking, and after the prayers are done, you know, it's a very different atmosphere. So even from our own cultural experience, we're sort of familiar with what it's like when you've got a huge amount of people. That was certainly the case when my maternal grandmother passed away last year, like it was just masses of people - I had to stand like three houses down. - You were up there, yeah, I don't. - It was, you know, it's building under the trees. I think our world entirely is made up of small spaces in general that aren't necessarily fit for the type of gatherings that certain cultures want her need to have. - And that might outdo our community in a ding, we don't have to stand three houses down. (laughing) - Yeah, and I guess the point is, we can relate to that sense of, you know, that sometimes the systems don't fit what you need to mourn the passing of the person. - Yeah, a couple of points in that too. I wanted to say even the funeral process itself. Why can't it be a celebration? You know, yes, we're gonna miss our loved one, but I think we can come back and remember and celebrate their life and who they were and their journey for this, you know, this time. - And I think that like what we've discovered throughout this show is that that is more and more something that many communities want and are practicing in different ways, whether it's even through living weeks with the person before they pass, you know, before they finish up, and more celebratory and non-religious or non-inforced systems, I think. But I imagine that like for us, the burial and the timeline is it pushes against certain regulations in the main system. I'm not sure if you can actually talk to this, but is there tension there as well in terms of where the body goes? - So returning to country is the important, you know, culturally for our people and also spiritually as well. The police is that if someone is not buried on country, then their spirit will remain stuck and not be at home. So there's a bit of, there's a belief around that. So a lot of people tend to take their love on time. Premations are currently on the rise in some of our communities due to the financial cost. It can be really challenging for families when they're taken away from community or country because some people are living off country. We've got to remember that people move around. We don't always stay, you know, where we're from. If someone is taken from their community and they pass in a hospital, there's little financial support to get them home. So some of the way that families are navigating that is opting for cremation, which is traditionally not something that we do within our communities as well, but it certainly is on the rise in some communities due to financial cost. - Research suggests an average funeral can cost between $4,000 and $15,000. On top of this, there can be other expenses like travel, catering and accommodation. Sometimes those costs are compounded by funeral insurance. In fact, in 2017, the Banking Royal Commission found there were systemic roots in the funeral industry and indigenous people living in regional and remote areas were at risk of being sold funeral insurance policies which offered very little value. We asked Eliza to tell us what supports are in place to ensure that remains can be laid to rest on country. - There are some programs within our government systems that will help people get back home. But it varies depending on the jurisdictions and which state or territory. So there are some supports available, but there's not too many. The cost is still mostly on the family. But in a recent story of the me with the financial cost of a loved one to be taken from the hospital mortuary to home has proved quite significant. It's been a couple of weeks since that person has passed and you can imagine when we think about the funeral process and when someone actually has a funeral, it sort of allows the beginning of that actual morning period if we're thinking of it in that sense. And if you've got a halt on that because someone, you know, financially our communities are looking for that money to get someone from A to B or returning to country, the halt on that grieving is significant and then the stress of getting your finances together and then the impact of people spiritually thinking, oh, you know, they're loved one and where they are. It's enormous. So there's not too many supports around, but there are so. - We in Jewish culture, we bury like ASAP, like sometimes within 24 hours because the religion believes that the soul can't rest until the body's in the ground. And so we try and hasten that period. It's the same in Islam. And I often see people who wait two, three weeks for a funeral or for whatever reason, people are coming back from overseas and want to be there or whatever the reason is. And it makes me really anxious for everyone. But I also agree with you completely often say to people like that grief is suspended until that's done. Like you cannot start a healthy bereavement. You know, I don't want to say cannot, but in general. - Tata. - And it's harder because you've got this thing to do and it's not finished, it's not closed. You need that closure of either ashes gathering or just cremation of the body being in the ground before everyone can move on. - And then it's like the beginning, yes, we're grieving before, you know, the after-feet of process. But once again, like you said, it's sort of, it's like the formal approval where you can actually start that sort of morning period. Some of the other cases I've heard where like ones are actually in a more fraught to eight months in the hospital mortgages because they just can't get back to community or where the hospital social workers are chasing families and sort of trying to help assist theirs. - Yeah. - Having worked in and out of these systems for some time now. What could Western medical models and Western palliative models learn from indigenous models of end-of-life care? - If we're looking at the palliative care model definition as it is, it incorporates, you know, supporting the families well and it's a holistic model in a sense. So that very much fits with our ways of being and doing and knowing anyway. And if I'm thinking, you know, the social-emotional well-being well which was developed by you know, Ani Pat and Tempton's Schultz and I apologize because there was other people's on it. But those sort of models fit really well with the mainstream, I should say, all the palliative care definitions. - The social-emotional well-being model of care often depicted as a wheel was created by a group of indigenous academics in 2014. It's now widely used in policy and health settings by Aboriginal controlled health organizations, peak bodies and other health agencies. - So within that, I would say incorporating community when we think of the tradition, what the definition of, you know, palliative care, it doesn't incorporate family but for us, it's community. And I think if we look at those compassionate community models which are, you know, coming into play now, it's incorporating all of that. So I think that's probably where, you know, it could change a little bit. - Is that something that you've seen change within the time that you've been doing this kind of work? Because I definitely understand that since I kind of first had contact with palliative and death and dying services 20 years ago, now 22 years ago now, it definitely wasn't as holistic and wasn't as family centered and wasn't as emotion centered. It was getting there and it wasn't terrible, but it was much more clinical and just about the admin of death and the pain management of death. - Yeah, there's definitely been a shift in terms of first nation palliative care, where there's now more funding being put into our space. There's also more Aboriginal and Torres Strait and the health workers and the dedicated roles of palliative care, which wasn't previously. There was people around probably 14 years ago in palliative care roles, but it was rare. But now it's more common. And even with the prison systems, could you imagine the journey for that person to be isolated in a sense and passing within and then the family, not being able to be with, I think there is, there's room for measure, but it would be a different experience. And I'm only imagining it, but I'm just thinking it would definitely be a lot different than, you know, say a hospital or a hospital passing a home. - Yeah, absolutely. And there's very limited beds as well in the prison hospital system. So it's not always possible. The aged and frail unit, for example, is pretty small in New South Wales. So it's not always possible to move into a bed to get the kind of care that you need when you need it. So that's a real challenge in terms of the custodial environment. - There's many challenges of working in this space, obviously. How do you maintain your own well-being and your own spirit in all of this work? - I think once again, it just comes back to that spiritual strength and knowing that I, what I'm doing is I work for spirit and I'm honoring my soul contract because I definitely don't want to come back and do this lifetime again and do the lessons and the challenges that I've had. So I just want to, you know, fulfill my contract and this is part of my contract when I talk about soul contract is sharing spiritual knowledge in terms of death and dying. But also, I hope that in some places, it doesn't take the fear out of death. It definitely does for me, but hopefully if I can share a little bit of that with people along the way because I, in any spaces, I'll always bring in the spirituality, depending on whatever I talk about. But in this space, that's what gives me strength. Just knowing that whatever I'm doing is being supported and guided by my ancestors than and my guides and those around me. - So Liza, you're a 2024 Churchill Fellow and congratulations, by the way. What's the focus of your research and how might it help First Nations people? - The focus is culturally safe and life care and to improve deaf literacy for First Nations communities. Not only looking at the palliative care journey, but everything else that comes with its own business, you know, current assistance, organ donation is another thing that I'm passionate about because it's something that we don't talk about but we should be. So all of those sort of systems, you've got grief and loss, you know, healings, spirituality, everything and anything to do for that, sorry, business journey, whether it's before, palliative, you know, during. And then, you know, at the time, funeral practice is funeral poverty and after and beyond. So I'm so excited to be just talking all day every day, talking about this and dying. - What countries are you going through? - Torres Strait Islands first. Torres Strait Island, if people say I'm a minority within a minority, but I want to make sure that I'm being busy with any perspectives and if I'm able to gather some knowledge, make sure that it goes into reports and recommendations with Zealand. So to connect with the moldy, some island Pacific Islander to see they, I feel they do death quite well, or they manage to keep their practices. So it's going to be really interesting to connect over in New Zealand and then off to Canada. A couple of different places in Canada, three different areas for diversity and then three different areas in the US and visiting two reservations at this stage, which reservations, if people aren't familiar, the same as communities for us here in Australia. So very excited about that. - At the heart of Eliza's research is the idea that indigenous people around the world share both a history and a connection which ties them together as spiritual brothers and sisters. So it makes sense to look at what countries like Canada are doing to integrate healing practices into mainstream health care systems. And on that front, Eliza says Australia has a fair way to go. - Because that's what's missing for our communities. If we think, brief a loss and we're thinking, sorry business, it's all connected to healing. And if we're not in a place where we're able to vulnerably share our experiences when we're talking about death and dying or sorry business, then it prevents us also from planning ahead and sharing in another sense, also pointing out as to do that. So it's all about healing. Everything comes back to healing for me as well. So and it's that spiritual healing. And that's what seems to be missing for some of our communities here. - What would you like people to say at your funeral? ♪ It's a funeral ♪ - Probably that I'm a bit of a nutter. And for just for people to bring that in. And I think I don't want my family or whoever does my eulogy 'cause I haven't planned that as yet to probably say all these good things. And when I'm not perfect, bring some of the not good things, you hear a few news and you hear people go, oh, such and such was a good person. Yeah, they may have been a good person, but they weren't perfect either. And if I'm saying they go, I don't know about that, but I want my family to be truthful in that sense. But also share some of those times when I was just made them laugh. You know, bring some of that in 'cause not everyone knows. It depends, you hear me comes in, but not everyone gets to see that kind of side of you. - That's very true. Okay, so if I can be a bit cheeky, what are they gonna say about you that falls into the category of a shizzaburger? - I'll probably break in people all the time. My kids have got a few stories to tell you. When anything happens, they go, oh, yeah, they know Strogoy, I bet you that's mom, you know? And I love doing it to the younger fella now, just for the shock of him. - Oh, yeah. - I'll ring him and tell him, oh, I call them mom jokes, but they're dry. So I'll ring him just to tell him a joke and then I'll see you later some, but it's just really quick and sweet. But this could be it, you know, what a clock in the morning. If he's still up, he'll answer, but he and his wife, I'll beat you, that's my ring and just to tell us a joke there enough for you. So just silly things like that, you know? There's been a few things, but don't worry, I've got a few little things planned for my own few. - That's amazing. I love a good prank and I love the idea of pranking the mourners at your feet. - Yeah, or punking them. I want to know what they are, but maybe the big reveal is not for now. - My mind is now racing with what I can do. - Hopefully that's a long, long time going, but you'd both probably live with the gentleman of the Bluetooth in his coffin in Ireland. It was, yeah, and was, you know, I think I'm not going to go that drastic, but I mean, I think not drastically go to bed. That's, I've got something else to play and I'll wait, say that's drastic, but. - Okay, okay. I can see you being a trickster in the afterlife as well with that energy. - A little bit, but then probably not so much, 'cause I actually, even as a spiritual person, when someone returns, I'm a bit windy to actually when my brother passed. I was, you know, crappin' it for months because I thought, oh, this fella's gonna get me back from childhood, you know, just pranking him all the time. So I was actually quite windy. He did end up getting me back, but, yeah, it was, I was prepared, I think. So, yeah, probably not as much. I won't be juggling out in the hallway and going, surprise, you know, I think it'll be really subtle about that. - I'll be unwalking. - Not on the door or, you know, just moving the keys or something, really subtle, you know. - I'm, I'm definitely into that. - I mean, I love a good poltergeist, but I don't know. I think I prefer jumping out to the moving the keys 'cause the moving the keys or the knock on the door. I'd be, did I, was it real? Did it happen, you know? - Yeah. - Less of pranking more just terrifying people. (laughing) - And finally, Eliza, if you were on your deathbed, what would you confess? - I'd be saying to my crew, do you remember that time when this happened, you know, was a prank or something similar and that was actually marked, you know. So I was thinking, it was probably around something like that that I would let them in. - Hmm, okay. - I'd have to think of your specific event because there's too many, but. - Well, Eliza took a moment to reflect on her maternal mischiefs. Anthony decided it was his turn to step boldly into the confession booth. - I mean, it's sort of hard when you might want to share something with someone who's passed much sooner than you and my mother's passed. So I always think of the time when my sister and I were mucking around at home and we knocked one of the paintings off the wall and it broke and we knew we were going to be in real trouble if we told her, like she could be very fiery and strict. And so instead of telling her, we just make shifted a kind of fix and we hung it back on the wall. We just hoped for the best and we just never told her and it stayed on the wall, no dramas and she never noticed. - She never knew. - That's amazing. - So I would tell her probably that mum, I broke the painting, the one that Grandma did. I'm really sorry. Yeah, that would be one of mine. - Yeah, no, that's a good one. So when I'm thinking of just childhood stuff, you know, when I don't know if you wanted to wear a school back in the day, we had this beautiful gas heater that was attached to the wall and mum was so predictable. If you said you were sick, the first thing would be should feel you're worried, you know, see if you've got a temperature. So she'd always cold morning, she'd have the gas heater on, you know, warming up the house ready for everyone to get up. So you sneak out, put your face in front of the heater for a little bit, warm up the fire, you know, and then go in and go, oh, I'm feeling a bit sick. Can I stay home from school today, you know? And the first thing she would do, put her hand on your fire, then you'd be all warmed up because you were just in front of the heater, so I think I had confessed that to her now and she does, yeah, she's not surprised. - Finally, the time had come for Nadine to ride the confession booth of truth. - Before my mum's passing, knowing that she was passing, I actually did confess like a bunch of teenage shenanigans of like being fined for drinking and hide pockets instead. - Oh, yeah. - All the raves I went to in high school. My mum was just like, yeah, like, obviously, you weren't that good at hiding stuff. I mean, you were up to no good. - You were naughty. - I was very naughty. And I'm with you. I was very naughty teenage also, yeah. Thinking now, there's probably quite a few different confessions there as well, yeah. - Well, thanks so much, Eliza, for joining us on Grave Matters. It's been a pleasure talking to you and hearing about some of your shenanigans and all the excellent work you're doing in this sector. So thank you. - You know, thank you. It's a collective effort from all of us. And there's a lot of colleagues in the space that are doing beautiful things as well for our communities, not only in palliative care, but just generally so. Shout out to everyone that you know, just soldiers on them and works in the space. - Absolutely. - And thank you to our true allies as well that, you know, stand with us and are working in our communities in a true sense, which anyone hearts. - Nadine, what are you left pondering after our chat with Eliza? - I think like I'm mainly thinking about that tension that we discussed between keeping a quiet and respectful space in a communal palliative care environment, like a hospital or a hospice, and people wanting to be rowdy and have multiple people and respecting that that's also okay, but how do we engineer places and spaces that can accommodate both? - Can they go together? - I don't know. But I would like to think, I mean, you know, from hospice, like experience at the hospice, the Sacred Heart Hospice in Darlinghurst, you know, they have a great sense of humor there, like there's a lot of joy and happiness and laughter, but in a very respectful way. So yeah, I'm gonna be thinking about that a bit, I think. - That's a really interesting idea. Yeah, I am thinking about the legacy of racism that remains in the health system that Eliza spoke about, and its impact on access to end of life care for indigenous people. And I'm thinking about how it sounds like that might be slowly changing, especially with the creation of Aboriginal health workers and identified roles in the system, but really, it's work for everyone to be culturally competent to create safe environments. So that's what I'm thinking about, and I hope that it keeps moving in that direction. - Yeah, I think so too. So thanks again to Eliza Munro. In our next episode, we met educator and podcaster Alex Campbell to talk about true crime, not getting fired, and helping a group of high school students solve a 30-year-old murder mystery. - We have to get over this misconception that 16-year-olds and 17-year-olds don't know what murder is. That they are not totally confronted with this every day of their lives. Go play any video game that's big amongst teenagers, listen to their music, watch their TV shows, watch their TikTok, and you will see that they're inundated with various types of crime, murders, killing, suicides, like it's there. - If this episode has raised issues for you and you'd like to seek mental health support, you can contact Beyond Blue on 1-300-22-4636, or visit beyondblue.org.au. Also, Embrace Multicultural Mental Health supports people from culturally and linguistically diverse backgrounds. Visit Embracementalhealth.org.au. For 24/7 crisis support, call Lifeline on 13-11-14. Or in an emergency, please call triple zero. - Grave Matters is an SPS podcast written and hosted by me, Anthony Levin, Nadine J. Cohen, and produced by Jeremy Wilmot. The SPS team is Joel Supple, Max Cosford, Bernadette Fungnam-Wyen, and Philip Solomon. If you'd like to get in touch, email [email protected]. 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