Danni Petkovic · 72 min
After losing her younger brother to a brain tumour and confronting decades of debilitating death phobia, Danni Petkovic transformed her grief into a calling, becoming an end-of-life doula, death literacy advocate, and national campaign manager who is changing the way Australians talk about dying.
Hear this story
When Danni Petkovic's younger brother Shane died of a brain tumour three years ago, something shifted. Unlike the six other deaths she had witnessed in her family since age 19, Shane's illness brought end-of-life carers who asked the hard questions: where did he want to die, what would happen to his body, what did he want his three teenage children to know about him. Those questions, uncomfortable as they were, opened a door. They let the family talk about death as something real and meaningful rather than something to avoid. For Danni, a former police officer who had spent decades battling intense death phobia, it was a turning point that led her to deliberately leave her career and retrain as an end-of-life doula.
Now Danni supports families and individuals planning their end of life, and manages Dying to Know Day, a national campaign to shift how Australians talk about death. Her work centres on a simple truth: people want to have these conversations, but they do not know how to start them or feel allowed to say the words. Without planning, families face conflict over resuscitation and burial when grief is already overwhelming. With planning, they follow someone's actual wishes. Danni helps people record messages for their children's 21st birthdays and weddings they will not attend, write emotional wills, and make advance care plans. She sits with the dying and with the grieving, offering continuity that doctors and hospitals cannot. Her grief has not disappeared, but she has learned to live with it, and in doing so, she has found her purpose.
⚠️ Content advisory: this episode discusses grief & loss, which some listeners may find distressing.
If you need support, you're not alone. Help is available: • Lifeline (24/7 crisis support): 13 11 14 · lifeline.org.au • GriefLine: 1300 845 745 · griefline.org.au
“it gave his life meaning and it gave his life legacy legs you know like I was able to know what he wanted to do once he wasn't here to do it”
“it's kind of one of those things that's still swept under the rug or considered taboo. And it's not taboo. It's actually affirming and reassuring and it actually helps lift a weight when you've talked about it”
“I was at the point where there's a thing called phobia which is intense death phobia. It's not just the normal worry. It's like intense debilitating fear and anxiety about death. And that's where I was.”
The hero, today
Danni left her career deliberately after studying and grieving deeply, choosing to become an end-of-life doula because she saw how the right questions and support during Shane's death gave his life meaning and allowed his children to know what he wanted. The difference between death and dying with support versus without is whether families argue over resuscitation and burial, or whether they already know the person's wishes and can follow a plan they made together when life was going well. Danni's death phobia lasted decades until she confronted her own mortality through Shane's illness and then by writing a letter about what death means to her, which shifted how she understands dying as part of living rather than something to deny. A doula's key role is continuity: staying alongside someone from planning through death and after, listening to their life, making phone calls, or being the bridge between family members who cannot talk to each other. Grief needs to be witnessed and the person's name needs to be said over and over, because people are already thinking about them and pretending they do not exist makes the grief more complex, not easier. Danni recommends Dying to Know Day events, Death Cafes, and Compassionate Communities as ways people can start having these conversations now, and if none exist locally, treating yourself as the someone who can create one.
Yes. Danni Petkovic is a real person who shared their own story in their own words. Kintsugi Heroes is a not-for-profit that shares first-person stories of overcoming adversity, told with the person's consent.
Kintsugi Heroes, a registered Australian not-for-profit. Every story is shared with the hero's own consent and reviewed under Kintsugi Heroes' trauma-informed content standard before it goes public.
Danni left her career deliberately after studying and grieving deeply, choosing to become an end-of-life doula because she saw how the right questions and support during Shane's death gave his life meaning and allowed his children to know what he wanted.
The difference between death and dying with support versus without is whether families argue over resuscitation and burial, or whether they already know the person's wishes and can follow a plan they made together when life was going well.
Danni's death phobia lasted decades until she confronted her own mortality through Shane's illness and then by writing a letter about what death means to her, which shifted how she understands dying as part of living rather than something to deny.
Hello Kuki listeners and uh fans of our conversations of which uh we're getting increasing numbers right which is very exciting. So um you know share um like you know or pass on if you enjoy this podcast but welcome and and as always this is the bit uh Danny where I always um um uh say the same thing basically but it's always true. I am very excited and and um enjoying a huge privilege to talk to uh somebody I'm inspired by often right particularly from recently hearing uh a beautiful story about um well basically about your purpose right and the and the the personal journey that led to some of your uh some of the important activities that you're engaged in now. So, it's Danny Petraevvic. Is that it? Danny Petkovic. Hi, Danny. Thank you so much for joining uh Kugi and for having being open to a conversation about something um that is you and I both know is should be a very comfortable and important conversation that everybody has often but isn't, you know, out there. It's not something people talk about. Um, so Danny, you you are uh the manager uh or event coordinator, director of uh dying to know day, which is um a uh a day that marks the need to talk about death and dying on a community level. And um and that is an incredible position that you've taken on. And you are a death dueler, right? somebody who cares for uh families and individuals going through the end of life process. What a fascinating and um incredibly important role you roles you have taken on. Tell us a bit about how you ended up in that space. Yes, thanks John. It's really um it's interesting hearing you repeat it back because I feel so privileged and honored to be doing this work and um it's no accident I deliberately changed careers last year um and it was after um study reflection and deep deep grief and for me uh becoming a an end of life or death doula and I also O like to use the word mortality doula because it doesn't have to be working with people who are dying. It can be working with people who are well that want to get their end of life wishes in order to not leave a mess for their family. And what that means is that sometimes I have to support them to lean into their own mortality. And I was very death phobic before uh my most recent um bereiement which was the death of my brother who was 10 years 10 10 months younger than me and um in July it'll be 3 years since he died and his sudden illness with a brain tumor and death quite quickly 6 months later was very confronting. Um the difference for me in my life until then and I had about 12 different career paths at that point um was that we had support in his death from um end of life carers, support people, duelers um but really planners to ask the questions and the right questions of what his death was going to look like, what um it meant for him and his he was a single dad to three teenage children. Um, and what that meant for the future of them and and his legacy. And for me, it was very confronting. You know, questions like, "Where do you want to die? What do you want to happen to your body after you die?" um they were they were confronting but what they did was they facilitated conversations that I wouldn't have been able to and no one in my family would have been able to and it opened the doors to this possibility that we can talk about it and make it okay and it gave his life meaning and it gave his life legacy legs you know like I was able to know what he wanted to do once he wasn't here to do it And it it was the seventh death that I'd been present for in my family. Um even though I was very death phobic and had a lot of death anxiety and anxiety over my own mortality, I was that person in my family from a really young age, like from 19 that was the one that gathered everyone to create a eulogy to help facilitate the funeral plans, that was holding the hand on the deathbed. But the only time in these seven deaths that death and dying were used as those words. And the questions were deliberately asked was in my brother Shane's death. And it really changed everything for me. And in the deep grief, I I just kept coming back to this, you know, in meditating and dreaming of I can do this work and, you know, I I want to support people because it's life-changing and it's our only certainty in this human form. that we're going to die, that everybody dies, that there's an end to life. And it's kind of one of those things that's still swept under the rug or considered taboo. And it's not taboo. It's actually affirming and reassuring and it actually helps lift a weight when you've talked about it, when you've when you know what your family want if if something were to happen tomorrow. Death's not just old people. It happens every day and it happens at any age. So yeah, that's where I'm at. So managing the campaign is such a privilege. Um, you know, I really feel honored to have taken those reigns from some incredible, you know, change makers and thought leaders in the space that have gone before me. Um, to really shape death literacy in a different or or shade it in a different light here. And then you know the other work is supporting people and their families with the end of life journey. Yeah. Amazing. There's so many questions I have. Right. So I'll try not to get interfere with your wonderful sharing. But the first one is like we talk about the need for this these conversations around death and dying, right? To be more explicit, to be more candid, to be more uh pointed, right? To be more relevant and practical. Why? What what what does what happens when we have these kind of deeper, more open conversations? Beautiful question. we we confront something that's there. It's always there. It's hanging over us. And for a lot of us, we don't confront it until we're forced to. So, there's the first challenge is that we're busy going about our lives, things are great, and then we either get a diagnosis or a loved one does or someone has a sudden death. Um, you know, god forbid it's your child or it's your, you know, somebody that is out of the natural order. it's not expected and you know there's only a perception of this natural order that's not actually a thing. It's just what we've made of it. So we're going about our business and we've not thought about it. We've not lent into it. And so therefore it's it's shocking and then you know grief is very complex depending on what you've already been through. But what it does is it stops us in our tracks. It forces us to think about everything. And then when we haven't actually done that before, it it floods us with way too many thoughts and feelings and emotions. Whereas if we actually know that there's a drawer over there that's got my, you know, end of life book or my end of life box and it contains my advanced care plan. So it tells you know the authorities and you know it's uploaded to my records my doctor knows my partner knows my kids know my parents know whatever that I don't want to be resuscitated or you know I'm okay with these sort of things but I'm not okay with these other things I want to be buried I do not want to be cremated you know I want um to be as natural as possible I want to have like you know a funnal a fun party for a funeral I don't want the morbid church you know celebration that um ends with stale sandwiches. I don't know. Like that's just an example. But I think the the challenge is that when we're not talking about it as a part of life, like we go and get a license, we go and pay our taxes, we we we sign up to all the things that we have to because we're told to, but this one we're not told to. So if we don't do it then it's it's more confronting and challenging when we are forced to because of adversity or sadness or or grief and bereiement. Yeah. So if we're planned when life's going well. The other thing is if you're if you have assets, if you have a child, if you have anything that's more complex and most of us have something that you know we're leaving behind, we leave a mess. And if it is that you don't know whether your mom, dad, brother, sister, child wants to be resuscitated, if you've got a few of you in the room and there's no one decision maker that's been appointed, there's an argument because you've got different beliefs, you have different values, you have different life experiences and that's messy and ugly and you're already faced with sadness and grief. So making it as simple as possible for people so they follow your plan. You know, we plan months for a birth or a wedding. Why don't we plan for death? You know, and it's one of those things that is not joyful. Death is sad. Dying is sad and can be very messy and ugly. And you know, the last and something years we've outsourced it. So, it isn't everyday conversation for us. It's not where we lay the body in the front parlor of the house and everybody gathers and breaks bread and tells stories and grieavves together. It's very isolated and it's become taboo even though it is absolutely not taboo and it's become you know foreign for us and I think that's where the difficulty is and I think that if we lean into it and just you know get your affairs in order um as as one of a better expression then you get on with living and you don't have to think about it again you know every year or who might want to update a financial will or the legal component, but there's emotional things. Who gets your pet? Who gets your phone full of photos and, you know, your passwords to your computer and your book collection and and those little things that are not, you know, your family recipe that might you may have hung on to that's been handed down to you. There's things that sit outside a legal and financial will that have meaning to us that help create a legacy. And my kid can tell her kids, you know, if I never get to know them, that, you know, this was my favorite meal or this was my favorite thing to do and this is what I was good at and what I loved and what I shared, you know, it's meaning. Yeah. Yeah. And that's huge, you know. So um and I was interested because you you talked about being death phobic and you know you also you know talked about other traditions and cultures which deal with death differently than say our western culture you know the one you know that Australia signs up to right and I'm I'm interested is it about our own fear of death that often means we are unwilling to confront the needs and conversations with others Is that something connected? For me, it definitely was. My first um job was as a police officer and even though um I saw much of the wrong side of death and was confronted with death a lot, my own mortality was still a block for me. So, I could never go there thinking, "One day this ends, one day I'm not going to be here anymore. One day there's nothing." And then what? and one day and one day and not having a um you know a religious upbringing per se where it was you know this is what you should believe. Um it was you know open for me to make decisions about and not having anything I I really lent into lots of different philosophies and studies and really tried to unpack that and never really quite got there. Um last year I was invited to contribute to the death letter project which um the fabulous Dr. Tina Favash um who's a photographer and artist and um social worker created and it's asking people what what is death to them and what happens after you die after you die. She has a particular interest in near-death experiences and so she talks to lots of different people and when I was confronted with writing that letter, it really brought up my mortality and how much it's shifted over the years. So for me that was definitely part of the problem. Um I think it is if you haven't lent into your own mortality, how can you then have conversations that are meaningful with others about what your wishes are? if you don't ever acknowledge you're going to die and that life ends. Um I think it can be, you know, based on experiences. If you weren't allowed to go to a funeral as a child, if you saw death in a different way or there was some sort of fear instilled in you about death and dying, I think there's so many reasons why we don't lean into it. and and partially we're too busy and there's so many other things to talk about and that we're forced to confront like I said before about you know basic things like you know paying your taxes and um registering for voting and you know things that we're forced to do um we're not forced to do this so it is a choice but you know it's a choice that we often leave too late most Australians don't have advanced care planning and directives done like the percentage is something like 28%. Um, less than half of Australians have a will. Um, and you know, far less surprising. It's shocking. And far less than those two things is that none of you know the percentages like not even in double digits of how many Australians have had meaningful end of life planning conversations with their family or the people that will be left behind to make decisions or clean up the mess or you know or make your life meaningful in the way that you wanted it to be in that your legacy is this and It's, you know, it's becoming more mainstream there. There is a bit of press covering it these days, but even the word doula is really not known in Australia. In in Eastern cultures, it's absolutely um really regarded. Um sometimes in birth in Australia, it's been really known, but in death, it hasn't been. And that's, you know, a shift, whatever you want to call us. It's a support person or a planner that helps you make those decisions and record them and then let people know. As part of the role that I have with dying to know day, we run education sessions and we go into workplaces to help support people to have meaningful conversations at work. So, we educate and advocate for conversations. So if one of your colleagues ends up having a terminal diagnosis um or a lifechanging illness or they lose a family member to an illness or disease, you know, somebody dies, most of us don't know how to have that conversation at work. We spend a lot of our life at work. Um so we educate and empower workplaces to have that knowledge and to be a community that can support a colleague or your boss or your staff if that happens. Um and and then we go into community as well. So for seniors festival um we ran 10 things to know before you go in Chhatzwood and you know there was 50 people in the audience and some of the comments were incredible. They were I've never ever had these conversations with anyone, but I absolutely categorically know what I want to happen. I've just never told anyone. Yeah. Wow. If you're if you die tomorrow, the people don't know, you know? So, it's it's always life-changing for people that have never had the conversation to to do it in a fun and a an easy way that's not it's serious. Let's sit down and talk about paperwork, you know? It's it's fun. We can have a laugh. Well, I I hear um you know when you say that it's hard for us in the you know in the population to grasp you know like our impression of the work you do must be that you're oh it's very solemn and miserable all the time. Right? Are you constantly sad? But that is that the case? Right. Not at all. Not at all. Death is sad. The end of life is sad. But that's one moment in time. And yes, there's bereiement and grief that sits with you. And there's a mourning period. And you know, for me, 6 months after my brother died was the worst part of my morning. I was beside myself. I didn't know how I was going to continue. knew I didn't know how I was going to mom, how I was going to work, how I was going to exercise, be a partner, any of those things because it was so uh and it co he died in July, so it was like the Christmas period that was just yuck. But instead of instead of pretending it wasn't there or numbing myself or busying myself, um I lent into it. I did grief meditation. I did grief yoga. I did grief walks. I did grief webinars. I got a grief counselor. I went to a grief circle. I really thought I really need to understand and unpack what these feelings and emotions are and why it's so different this time. I cared for my grandfather 15 years before and when he died, I honestly thought my daughter was two and I thought I can't I can't survive and I don't know how I can be anything to her because the grief was so overwhelming. So, I knew from that one that time doesn't get rid of the grief, but what it does is it allows life to continue around you and grow around the grief. The sadness is I could be balling my eyes out about the loss of my grandpa right now if I went to certain thoughts and memories. But in those 16 years now, what's what's changed is that my life grew around that sadness and that grief and that loss. And I think that we like we find ways to continue, but it doesn't always make the meaning. So those other six didn't do the meaning that losing Shane did. Like his death shifted something in me. And so at that 6 month mark, I went, okay, I'm going to do everything I can to unpack this and to to try and feel all the feelings. And it landed me in this, hey, I've got this skill. I I went and started volunteering at Bear Cottage, which is a children's hospice in Manley, and you know, offering them the fact that I can sit with grief and death and loss, and I'm okay to have those conversations. um how can I help you make legacy with your child that you know is is cruel and heartbreaking but there is still a way to make meaning one of the great challenges of having of of processing grief from my perspective is the um you know humans try to make meaning of everything right you know we we sort of measure the world and you you it's crazy making to try and make meaning of somebody's presence time allocated, you know, like it's, you know, they're here and then they're gone. Um, and that is like indecipherable for us, right? You know, like why is it how is it, you know, justice doesn't work, fairness doesn't work, you know, there's no kind of you can't bargain away your time, right, or keep hold of it, right? It's so true. It's so true. And I think that we we have this conversation where I'm fighting cancer. I'm battling cancer. Well, you're not because that kind of alludes to an equal playing field. It's not. It's it's awful. And the reality is that the meaning we make of something is made up. So, you know, I decided that my brother's death had made me confront my own. And, you know, we're 10 months young, like ch in age. He's 10 months younger than me. So, he's the closest person other than my parents that I've known my whole life. And I couldn't not confront my own mortality. And by confronting it, I realized that meeting it head on instead of making a story about stuff, it allowed me to go, hey, what if it just ends and there's nothing? And I'm going to get on with making this life that I have now the most meaningful I can and give as much as I can to everybody I can give to and and bring it in a way that is light and fun as well as serious and sad because life is about all of the bits in between and not just the birth and the death. We were given the capacity to have all of these emotions for a purpose. they you they're useful in some way in our survival. So, you know, like using them in an effective way to get through this must be a good idea. I I just wanted to touch on, you know, how you talked about, you know, confronting your your brother's experience and and you know, uh his passing brought on to you the need for you to come to some accommodation with your mo mortality. And from my perspective, I I had a similar experience. The idea of say momento mori, right, from the stoic philosophers, right? A moment of death is about sort of almost releasing us from the the fear of death, right? When you understand that the moment of death is inevitable, you're you know, I love the way you put it. you were then free to get on with, you know, well, we need to make, you know, our legacy while we're here. Is that like that freedom? Is that what this is about? You know, when you when you ex is it acceptance? Is that where we go? Is it sort of acceptance and then ownership of our own mortality? That's an interesting way to phrase it. Ownership. Yeah, it's definitely an acceptance thing for me. Like I don't have to keep trying to work it out. I don't have to understand what happens next. I wasn't, you know, like I've seen enough death to kind of think there's something else. The reality is I did this course with a beautiful um lady called Zenith Varago recently and she runs death walkers and it's um about ceremony and end of life and you know when when um sitting in her weekend of training and learning it was really interesting because she's been doing this in the Northern Rivers region for about 30 years and she she runs a place called Natural Death Care And when she said, "How many of you believe there's something else?" Like everyone's hands immediately shot up. And yes, we're in a room for for death walkers, which is another word for duelers or support or planners. Um but what um what she said is in all of her time, there's like a very small percentage of people that say no. So we all believe there's something. We don't know what it is. And the ones that profess to know what it is are as bad as the ones that say there's nothing because, you know, you can't profess to know when you haven't been there. And that's and that's what I made mention of in my death letter project. Um the reflection was I don't know what there is after death. But I can't be witness to death and not think there's an energy that came from somewhere and that must go somewhere. So for me, that's enough. that's enough for me to go, okay, I've seen enough to to say, okay, I don't need to work it out. I don't need to um delve into that because that's actually for me a waste of life. Now, what what it is for me is every day living with a passion and living with a purpose that fills my cup and then allows me to fill others. And for me, that's everything. you know, I joined the police force to help people and it it took me seven years to realize that was not the job to do that. And but it it's also taken me what is that um 30 something years to then work out what that work is. And now the work is so meaningful that I don't question what's next. I just accept that I'm living each day like that. And so, you know, I might be here for another 50 years or it might be shorter. But either way, I don't have this thing hanging over my head that is pretending it's not going to happen. And I think that's it. If we pretend, it's it's fear-based. And the fear is now dissipated. It's completely gone. And I I can't really answer what it is. But I know that talking about it and leaning into it and reading about it and studying it and you know having conversations and making legacy meaning for me has changed it shifted completely. So I I was at the point where like there's a thing called phobia which is intense death phobia. It's not just the normal you know worry. It's like intense debilitating fear and anxiety about death. And that's where I was. I'd spent decades and decades trying to understand why I was so debilitated from my fear of death. And it was a a stopping like if I let it, it would control my life. It was controlling my life. It would, you know, stop me in my tracks. I couldn't breathe. I couldn't I couldn't I felt like I I couldn't survive because of this weight and this fear. and it was driving everything. So, you have really embraced a form of you've embraced a form of uh what CBT, right? You're just immersed in it now. So, yeah. Yeah. Overexosure. I don't know. Well, the it's it's incredibly, you know, interesting about like we we talk often when we're talking about death, we we naturally slip into the spiritual, but there's also really important elements of practical, which you touched on earlier. What are the things you need to do to help a family on that kind of operational sort of you know set up a good experience both from a a practical point of view but also from setting them up to navigate that that grief journey well. Yeah. Sure. Sure. I think um meeting people where they're at. So not everyone's going to be okay with saying death and dying like we are. um you know so meeting them and using language that is is what they're comfortable with whether it's their diagnosis or someone else's or it's frailty in aging then just really being present listening and hearing what they think they need in this scenario and if that is I don't know how to tell my kids I don't want to inflict pain my one job has been to protect them and look after them I don't know how to tell them. So workshopping that um offering support and guidance to walk alongside them and be with them in the room if they need on the phone whatever it is that they need in that um empowering them to know that they can do it. They they can actually have these conversations and and and that it's okay to accept help too. We spend a lot of time, particularly in our culture, of saying, "No, mate, we're right. I don't need help. I'm good." You know, um I'm I'll help you, but I I don't need it. And then when we actually need it, it's too hard. It's too hard to change that innate thing inside of us, or it's too hard to change everyone else going, "Oh, no. She never needs help. She's always got it under control." And so, it's really just tapping into those things. So, we'll start with, you know, is it the paperwork? Do you have the the necessary paperwork to make you feel comfortable about your end of life? Um, and then, you know, practical things like where do you want to die? Is it at home? Is it at a hospital? Is it at a hospice? Cuz hospitals not designed for people to die in. It's to get people better and send them off. So, we we do have a capacity problem. We do have a big problem coming in the next couple of decades with, you know, the baby boomer generation dying and us not having the population underpinning, you know, that to support it and the facilities. So, where do you want to die? Have you thought about that? Have you thought about who you want in the room? Have you thought about the things that are important? What scent? What music? What fabrics? Um, do you want your pets there? You've got a comment. What's your last meal? What's Oh, get a big one. A big one. What's What What's the last thing you want to eat? You know, and in Australia, nearly every state and territory now has um voluntary assisted dying as an option. So we're lucky that on the 28th of November 2023 that was passed in New South Wales here and people can actually if they fit the criteria apply for voluntary assisted dying and that plans it to a within a minute of when they're going to die. And so yes, I've heard some beautiful stories of people planning not just their last meal but their last days and weeks surrounded by family and nature and pets and you know the things that are important to them in life. We the expression is we die how we live. So values are really important to us. If we value certain things in life, of course they're going to be playing a part in our death. And often they're not because we haven't had the conversation. So then we get rushed to hospital and you know there's machines trying to keep us alive when that's actually not what we wanted. Um and you know so that does allow people to have some choice that wasn't there before. Um I did go to that appointment with my brother because he was eligible and we did go to that appointment but what I did notice and witness with him was that as soon as he was told that it's possible he forgot about it. He just wanted to know that he had a choice. And when you have most of your choices of every day taken away from you, you want control in any way you can. So I think it's all those meaningful things that mean something to you in life that we talk about about what end of life can look like. And if it is that you really can't go there with people, then I can be that conduit to help. I can go between family members. You know, not every family is loving and peaceful. So that's tricky, too. So, how do you navigate that when someone's dying and you need to have conversations with people that you may have not had conversations with in decades? Just because you're family doesn't mean that you're friendly. Yeah. No, that's very true for so many. What um when you think about um you know the the mo moment of death you know like people or the period leading up to the people like do they you know are they frightened are they um do you think uh they ponder on what they didn't do you know like what do they we you know is there time where they you know review some of the decisions and things they do or is something that they're looking out at. Everyone's so different. Um, and it depends on how much time they've had to plan and how well they are at, you know, there's a there's a big push about aging well now. So, we support people to be as well as they can up until death. Um, because, you know, dying has changed in Australia. It used to be um you know 60 was old and then you just died and now we have um illness and medical systems that keep us alive longer and so it's kind of bumpy at the end of life. So it depends on your condition of your quality of life and your condition at end of life. A lot of people uh will still say, "I'm I'm not ready to die, but I've accepted that this is a reality." So therefore, I went I went down to Melbourne and saw a beautiful friend who was in his 70s, and he said, "I thought I had another decade. I really did." Um, but here's all the things that, you know, we recorded something together. We talked about what he didn't want a funeral, and you don't have to have a funeral in Australia. So that's um something that a lot of people don't know. We had a beautiful memorial party and he opened his he had a beautiful collection of he was a documentary filmmaker and um beautiful journalist and writer and he opened his book collection to all of his family and friends that came to memorial to choose something that meant something to them from him. And so even after his death he had this beautiful message for us all. Um and and so it's so different for everyone. Um, I think that it's a spectrum of feelings and emotions. There's some people that are just like, I'm ready for what's next. I'm ready for the end of what this has been and the possibility. I'm ready for a rest and some bliss and some peace. You know, some people have really struggled and fought. My grandpa was 94 when he died. And he used to say to me all the time, "Oh, you know, even though we didn't use the words death and dying, he still said things like, "Oh, I just I just want to sleep. I just want a big sleep. I just want to rest now." He came to Australia as a war war refugee from Yugoslavia in 1949. And he really toiled. You know that word toil? He really toiled, you know, and and he had war nightmares in his, you know, up until he died. He still had these horrid, you know, prison camp nightmares. And for him, he was ready. His mind was still very sharp, but his body was failing and, you know, shutting down. 94 years is a long time to be a human, particularly with the hard labor that he put in. He was a farmer and worked really hard. So, he was very pragmatic. That that comes across a lot. It is what it is. My brother used that a lot. I really hate it when I hear somebody say that in another context now because it brings me back to being in his room. And I'd say, you know, what are you scared of? What are you feeling? What are you worried about? What are you And he's like, don't cry. It is what it is. There's nothing we can do. And this is what it is. And it didn't make me cry less, but it sat with me that that that could be a contentment that someone gets to where they don't know. And I like to think that there's little messages from him here and there. And you know, other people I've supported have been very much it is what it is. A beautiful man I supported recently used that line a few times with me. Um, yeah. So I think I think my mother mother tells me it is what it is every phone call. So yeah. And and do you do you feel like you can support her in her end of life wishes? And the reason I ask is because back when I was a death phobic um my grandma who was I was supporting both. She had dementia so I was supporting both of them to live on their farm so my grandpa didn't have to go into care. And she would say to me every week, I want to be buried in the pink dress. I don't want to be buried in the white dress. I know I said that last week. And then she'd say, "Don't forget the socks. You know how I hate having cold feet." And I would just shut down. Grandma, don't speak like that. That's awful. I don't want to hear that. You're being morbid. And now I kick myself because I've changed so significantly that I wish I could have those conversations. And she was lucky. were in a country town in Victoria and she was able to have these beautiful conversations with the funeral director who took took her call every week and wrote down her new wish. But not everybody has that, you know, especially in in these big cities. So like do you can you have that can you be that person with your own lived experience for your mom? I'm getting I'm getting better. It's interesting you know how many things come to mind in when you share some you know your experiences right because you know I have lived experiences you know as most people do but uh in particular some of the you know particularly tough tough things that you are talking about you know like um having the support of someone so when my wife passed away um I had to share that news with the children and um I I I was completely flumxed about what, you know, how I was going to do that, right? And it was a it was a caring uh support person at the time who was able to give me something that I could sort of, you know, bite into that at least allowed me to continue on and do something that is probably the hardest thing I've ever done in my life, right? which is to stare at your children's, you know, eyes and and tell them they're, you know, they're now without their mother. So, that was that was that that was the beginning of me understanding more about the, you know, what I needed to do, a journey I needed to take. And I can see parallels in what you're sharing. So without wanting to, you know, take over the story, I I do have questions around that like it I have that feeling of not knowing what to do, right, in that circumstance of death, right? And I wonder is that, you know, that's s was so important to me to have someone offer themselves and and and suggest and and advise and be, you know, be calm and and responsive at that time. Is that what a death duel or a a death walker or however we characterize them is that is that the number one role? I know there are practical things and there's conduits and in you know but that that level of like you you're walking this dark path with someone. Absolutely. It's it's a support. It's a friend. It's it's walking alongside them in that on that path and it's it's really me, like I said at the start, meeting them where they're at so you can actually be of help because if you come in with ideas or you're not there to fix anything. Death doesn't have a fix. You're not there to give advice. You're you're there to support. And if that is make phone calls, if that is take them to an appointment, if that is just listen to their stories, listen to their life convey the message to other people when they're not able to um it's it's something that I really feel privileged to be able to support people with. And I think yeah, we don't want to inflict pain on anyone. So how can we help be that independent person that actually supports you to get that across whether it's you know just practicing it with you so you can do it or actually being that that person the the unique thing for me that I learned before look it came to me that I've been duelering for many many years and decades before I even knew what it was. So what I now see in reflection is that the thing that the doula has that the oncologist or the neurologist or the GP doesn't have is a continuity right through or even the funeral director. So in an end of life experience where there's an illness, you're shunted between different services and they very rarely talk to each other. And so there's this constant having to repeat the story. There's a constant of people not knowing who you are and a duller is often employed for that reason because they're there from if it's you just getting your plans in order now then you come to me in you know decades and decades later say oh this has happened you know um he's here's what's happening for me and you know like for Shane's journey the oncologist was brilliant he he was treating the the tumor the neurologist ologist was Australia's best neurologist at Royal Melbourne and she was treating the brain. Um, they didn't speak ever. You know, the radiologist is is looking after the treatment that he was having, but none of them spoke and they all had differing opinions on whether he should, you know, be keto, be vegetarian, eat whatever you like cuz you're going to die anyway, you know, um, exercise, don't exercise, rest, sleep, you know, like it was all so different. So what I witnessed in him having this beautiful charity called Shannon's Bridge in country Victoria who are end of life care care people they came all the way along the journey and so when we were um engaged they were there every step of the way and they actually knew who he was and treated the person and you know with as as a dueler we can help you with the funeral service the celebration the post death care as well and the rituals and the legacy and the stuff that is after death as well as in wellness and death and and that's something that's missing in our system in Australia. Yeah, it's so true. Um how important is it after you know the the initial ritual of funeral and wake etc. How important is that uh that people care in a special way that acknowledging the journey the grief journey and process from there and what happens when it's done well. I think I'm a bit of a living example of when it's done well, what you can actually then flow on to support other people and help other people and make a difference in other people's um death and life. um because you live up until you die. So, you know, the quality of life is important for a lot of people. And I think that what what I notice is that sorry, can you ask that question again? Yeah. Well, it just I was just wondering, you know, the after so so often all of that, you know, peak of activity and ritual and so on and then it just drops off and then people who are, you know, grieving are almost left alone at that point. And I just wondered how important is it for someone to, you know, to help beyond that, you know, the the the wake and the and the lasagnas that filled your fridge and after that. Yeah. My brain went firing in so many different ways. you know the the studies done you know there's fabulous people in the space Elizabeth Kubler Ross who was this amazing woman who came up with the stages of grief that has then been bastardized and used in the wrong way but um David Kesler is a guru in the space at the moment and everything that I've learned is that grief needs to be witnessed we want that person's name to be said over and over if you think oh I can't actually say their name because they'll think about it. We're already thinking about it. We're already deep in the in the perils of grief. And if you don't mention their name, you pretend they don't exist, then that's yeah, that's worse for grief. And that can create a whole complexity and grief. That's, you know, but for for me, it was like leaning into all the things that shifted things cuz I've been there before where it was like a deep dark hole, you know, where I was trying to be a mom to a 2-year-old. My grandpa, who's my favorite human on the planet, had died and I felt the biggest hole in my world that was swallowing me and I didn't know how to do anything except I had to get up every day and look after her. Now, I I think that it's important that we talk about it. It's important that we have a culture in our society that, you know, doesn't try to fix it because there's no fix that just talks about how are you today? Do you if you don't know what you need today, you know, here's how we can help. There's an app called Help Pelp. Um there's an app called Gather My Crew, and they're help is specifically for end of life, but Gather My Crew is for other circumstances in life, but they're basically where you put out what you need, and people sign up to different tasks. And it's a nice way to actually support us where um we actually can't say yes to to help um because it's not natural for us because you know it's whatever it is the reason that you can't actually say yes to help. Um so the help app the healthy end of life um program is a platform that um has been designed for exactly that reason. Um, and there's there's so many That sounds awesome. I haven't I haven't seen that before, but it it would be wonderful to recommend it. I'm interested you when you said for whatever reason, do you think it's something like, you know, we are so trained not to be willing or not to accept help or to see it as negative that we've lost the muscles for accepting help. We don't know how to do that. We we we do and we have and you know it could be um not an end of life experience where we actually need community to rally together. There's a compassionate communities movement um globally that is leaning to that. So um last year compassionate communities Australia was formed and that's really creating um community where it may already be existing or it may not but it leans itself to it. So, you know, during co we saw a lot of that. We got to know who our neighbors were. That's a community. You know, my street might be my community. My group of friends might be my community. My kids, you know, if if you've got little kids, it might be the school community. There's all these different work. You know, work is such, you know, it's I'm so passionate about getting people to have those conversations. I had somebody say to me, a question was asked about whether I was available on this day in a work sense and I said, "No, I have a grief circle then." And the the comment, the really flippant comment that came quickly back for what? And I said, "Well, my brother died." And the comment was or question was, "Wasn't that 6 months ago?" Oh my gosh, that was a knife to my heart. Like, it really was because that was when my grief was the worst. Everybody grieavves differently. For me, the 6 month mark was awful. You know, I talked to a friend who is at the moment um at the National Center for Grief and she's doing study cuz she's a beautiful um human who works at the Sydney Children's Hospital Foundation coordinating their art programs. And she was sending me all these learnings that she's had that, you know, are similar to the learnings I've had. and we're talking about how grief is um grief is so different for everybody. And one of the things she said to me this morning was um we have symbols that raise a memory of the time you spent with them. And you know she said we link objects and symbolically spending time with a loved one. And it got me thinking and I said well how crazy is this? I've just moved house recently and here's two items. and I took a photo of these two medications, supplements that my brother was taking that I couldn't throw out when I left house. So, I've brought them from country Victoria to Sydney and then I've moved house two weeks ago and I had to make a conscious decision. What do I do with these? And I said to her, this is the weird thing grief does to you. I can't throw these two half used bottles out. These were things that I was giving him every day to help with his the effects of chemo and his pain and and gut. And she said because they're symbols and so you spend time with him when you see those items and you know like grief is so unique and different. The good morning do you know the good morning girls? They like they they talk about every week they're like what did you do that was so griefy this week and you know that comes up for me how grief to hold on to these two out of date used bottles of supplements you know. So, grief line is a beautiful support people too. You know, that's an Australian um option to to get people free services as well. Sorry, you were going to say no, I was just going to say that that amazing idea. See, one of the challenges, so you know, full disclosure, I was diagnosed at one point with complicated grief, right? So, um which I find kind of hilarious, right? like I don't I haven't seen any grief that isn't complicated in some way, right? But yeah, the idea that you you're meant to run out of grief after a certain amount of time is just kind of a bit silly from the clinical side of things. But um one of the challenges I found was as a as a man right you know when you are connected you know when memories are your only contact to some to someone you love or and um and aren't ready to say goodbye to yet no one else will bring that up. Right? So you actually don't have a chance to to to to sit in those memories even if they're sad or or challenging, right? You know, how on earth do you process them? And of course, there's that idea of you do want to remember much when you spend a life with people. It's not, you know, you don't want to to forget the things that were great or fun or meaningful. You want to be able to touch them without suffering, but people won't bring them up, right? They, you know, those conversations are avoided. And often it's in it's done with um care. They want to, you know, save you grief, right? But in fact, grief is the way we process these. So, it allows you to have memories. Yeah. We're already in the pain of grief. We're already feeling it and sensing it and processing it every day. And I think um I tell people that I need to talk about him and that I need to talk about it. So then it gives them permission too. Um I have photos and little momentos in different places that every time I walk past it's a hey my bro. Um uh but but I also know that some people for that can actually and you know it can and it can actually make things much much worse in the grief process. So they need to not have it. And in the early days, I actually I think I asked my partner and my grief counselor, should I just move that photo that every morning and night I see because I am just inconsolable. Um, and I couldn't bear to. And at different times it felt different for me. Some people absolutely need it. They need to be in a clean space to grieve and just be with the thoughts in their brain and their but I'm very visual and for me that was actually it was a short time that I felt that and then I got past it and now I have a little smile and a talk you know I drive around with him in the car I have a little memorial in my car as well and um and so it's it's very different and I think that you know um my beautiful friend Rose when she said that she's um at the national um center for childhood grief you know, she she said it's inspiring to hear about the process that allows people to talk about grief. And you know, like it it's really something that is different for everybody, but I think there's a commonality that we don't want people to hurt. We don't want sadness. And with grief and death, there's no fixing. And that's the hard part because if if we as humans want to fix things and we can't fix, it means being in the silence, it means allowing whatever is there to be without changing it. That's hard, but it can be really beautiful to just sit with it. so much grow personal um you know learning in the process of of working walking through our own grief and learning about relationships both gone and future and so on. So it's you know it's not just about sadness is it? No. And you know, like I have such fond memories. I have a laugh with people about silly things and fun things and you know, I have like it was my brother's daughter's birthday yesterday. She's 20 and we had um sorry 19. And we had I'm aging her and we had a moment of laughing and you know like every now and then we'll share this photo that we know is a bit naughty because his beloved dog would climb on a table that the dog wasn't allowed. And we videoed it one time and you know we just remember him being so like you know this is really forbidden my to be on my grandma's table and you know like we we can remember things with joy and humor and love so much love you know love grief is just another expression of love even though it's painful it's just the way we the way we relate to the person that we've lost with love that you know really shapes it. I I have a um a thought about grief being not necess like we you know we we are grieving not necessarily the person who's gone right they you know often they're in a situation that is actually improved right you know like they're ready to go in some cases or you know they're certainly beyond pain now right but we grieve the time we would have had them our lives that are changed as a result of them not being in them. Would that be fair? Do you like the sense of I'm grieving that I have no more time, no more intimacy, no more moments to to develop, no more Christmases, no more birthdays, whatever it is. Is that is that something we need to accept, right? That it's actually, you know, we're the grieving parties now. It's about our life and we can change that. Yeah, I believe so. It's That's where the loss component comes in. You know, people say, "I lost my partner." And well, you didn't actually lose them in that sense, they've gone missing. You know, it's the loss of our relationship. It's the loss of it's waking up every morning and them not being there. It's birthdays, it's Christmases, it's um celebrations where there's an a real felt absence of that person and what they brought to the party in each scenario, in each setting. And I think you're absolutely right. It's it's the grief that we hold is the lack of their presence and and and those future. You know, I remember at my brother's funeral, um, helping his kids be able to deliver a little speech about him. And, you know, we coached my beautiful partner and I coached his eldest to how he was going to say the things that was so painful. But one of them was to say, "I'll walk you down the aisle for dad, for his little sister." because you know that's something that you know is in her future where he's missing and so sometimes Yeah. Wow. Sometimes as a dueler that's something that you know like I spoke to somebody yesterday and it's like can you record a message for their 21st? You're not going to be there. That's crap. But you know can we record something so there's technology now where it can sit and deliver on their birthday a message. You know, that's pretty incredible. There are other ways, of course, but there are tech platforms that can do that for you. We live in a, you know, in this AI digital age like no other, but imagine getting that message. You know, is there stuff we can write down? Is there a little video I can make with you that is saying what your 10year-old means to you right now because you're not going to be there for 11, 12, you know, forever more. Is there an advice you'd like to give that you've learned in your life that you know for their wedding, for their job where they really hate it and they don't want to do this job anymore? Like what's your advice when you're not going to be around to tell them? Like, can we can we can we make meaning of your loss in a way that is giving them something in the future that you're not going to be around to? So the grief, yes, it is about what we're lacking, but there are ways to kind of tie it back. Like I never want to stop talking about the people that, you know, I have lost in my life because that keeps them alive in my memory and yeah, makes me happy. I had um that brings up an important question. I have uh you know like I I saw um on um television at one stage a bloke who people are engaging to turn up at their funeral, right? To deliver bad news, like saying, "Oh, yo, Uncle Bill, I don't like you. Get out of my funeral." Right? you know um and I I I don't know how good that is but you know it's interesting idea about you know we can with technology now we can reach into the future which means like I always wanted to deliver a eulogy at my own funeral which I can do now through technology right of course I'm worried that people will go just typical wanting the you know the last word of course right so but uh uh I don't know exactly how um how well received it'll be. So well people are also opting to have living wakes and um and you know like having those doing their eulogy now while they're still alive with all the people around hearing what people want to say about them. Why not? You know, there's so many times where those things are said um postumously that have probably never been said in life. Like, you know, like why not? And you know what? Absolutely do it. No, you're not going to be around for them to chastise you and you won't hear them say, you know, oh, he had to have the last word. Let like have the last word. Good on you. Bring some fun to it. You'll bring a smile to people's faces. That's beautiful. Just uh on that words, uh Australians uh struggle to say things that are caring, grieve, you know, supportive or whatever in when someone at a funeral or whatever, it seems to be always a difficulty. What What's the best thing to say to someone just in that moment when you're offering some form of support or condolence? Do you have a fa do you have something that works for you? Uh I like to ask what your favorite memories are. what uh what you liked about them uh what they were good at and really just try and elicit things about if I didn't know the person in life then really elicit from the people that I'm supporting what it was that was the meaning in that relationship and really trying to uncover who they are and photos are very good at doing that like we all have you know beautiful um slideshows of photos at funerals now and I love that component. Um the the the music and the photos because it tells a snapshot. It shows a snapshot and I think that it is very hard to get those down often because the grief is so intense. The loss is so fresh and that's when you have to do it. Um, but even something like if they were here in the room now, what would you say to them? And you know, just trying to capture that because Yeah. Right. that puts you in a little bit of a different frame of mind if you're able to go there that's really raw and honest and real and then that can be translated into a story that people are going to relate to. People love stories. They do. and they can and you know they find something about themselves in that story. They can relate on a human level because that's our commonality. You know, we all have we're all emotive beings and we're all going to die and like pretending it's not going to happen is, you know, is a bit crazy actually. Yeah. Talking about death and pretending it's not going to happen doesn't make you immortal. So, you know, um I have to say, uh you know, talk people loving stories. Um and, uh you know, we're finishing on a note that says, you know, what this story will be relevant to everybody who listens and everybody they know, right? It's a story we all have to shape at some point in our lives, right? So, um I and I think I feel like today you've certainly created so much uh insight and so so much um momentum for people to to start to explore that. Is there something you would recommend them do? You mentioned the the mccclissics and the you know national center for childhood grief and um you know what would you recommend people do to to further explore what we've uh encouraged them to think about today? I would recommend August 8 is dying to know day. I'd recommend looking in your local community if there is a dying to know day event because we are national. We have hundreds of events all around Australia, every state. Um, that's a really easy way to go to something that is delivered in a way that is pal palatable for the masses. So, that's one thing. Um there's a movement called the death cafe movement where people go to a cafe or uh a building and you know the commonality is cake, coffee or tea and talking about death and dying. There's no agenda. It's just a nice way to come together as community. Joining a compassionate communities movement if there's not one. Creating one in your area. Um, people want connection, you know, more than ever in this digital age, people want human connection. Um, I think looking at how if if there's not an event, you know, are you prepared to create one? Are you prepared to jump onto Compassionate Communities Australia and find out who can support you to create a gathering? We held one in Terry Hills recently that was called Who's Got My Back and it's was an full day potluck just bring a plate to share and we just no agenda really and just had a beautiful day talking about what different experiences brought people there and how talking about death and dying means you know different things to people but they want to have that outlet. they want people to speak to that all the research points to people want to talk about it but they feel like they don't have anyone to talk about it. So creating those communities and I think just getting comfortable with your own mortality as part of dying to know we have um a final checklist on our website. We have a template for an emotional will a template for letters so you can write letters to the people. I have something called a departure box. It's um just a box of things that I pop in for different people in my life. Like my daughter, if I wasn't here tomorrow, that's a box that is there for things that are meaningful for me to give her. Um just little things that are meaning that have meaning to you. And if it's journaling, if it's, you know, getting onto one of these websites and creating your digital legacy and, you know, recordings that you want told after you're not here to tell them, creating your advanced care plan. Like, it shouldn't be up to paramedics and family and, you know, doctors in an emergency room to fight over whether you should be resuscitated, whether you should have a feeding tube. you know, yes, they're confronting questions, but not as confronting as being faced in, you know, the worst grief of your life, making these hard decisions. Um, Advanced Care Planning Australia is a beautiful resource. They It's National Palative Care Week this week, which means, you know, looking at um what palative care is, and it's it's not an ugly word. It's there to support everyone at end of life. It's our human right to have it. You don't need to be actively dying to have it. You know, at first sign of diagnosis, palative care love to hear from you to know that you're in their area and that you may be needing support. You can die at home. The government has released um funds for that from the 1st of July. Um $25,000 for people to be supported to die at home. It does take a bit of a village approach to actually have that support in the dying process. But there's so much available out there. We live in a world where we have this computer in our pocket. You know, go on there and put it in and find out what's available in your area. And if it's not there and you think it should create it, you know, I I spent years supporting the rough sleeping community in Sydney, in the city, in the CBD, out west, and on the Northshore and Northern Beaches. And one of the things that the founder of our movement which was blanket patrol and Sydney Street Kitchen, he used to say this regularly. It was his birthday yesterday too. And he used to say if you think if you think something should be done, no, if you think there should be something done, then remember you are that someone, you know, like just just have a go. Like we don't need a qualification or a piece of paper to be a good human and to offer support and help to people and to lean into what it means to be prepared ourselves. Beautiful. Thank you so much Danny. you have really first of all for sharing your um your rel you know personal story of grief and and death and uh for you know offering so much um resourceful uh thoughts and uh insights for uh all of us to take away. So it's been wonderful. I look forward to our next chat. Yeah, I really appreciate you asking me to um come on and talk these good things and you know, I appreciate your time and your curiosity in this space too. It's really appreciated. No worries. We'll love your work and uh um and have a a wonderful week. Cheers. Thank you. Thank you for listening to this episode of Kugi Heroes. Thank you to Colin Lily for permission to use Broken as our theme music for this series. If you enjoyed this conversation, share the podcast with a friend and let us know by leaving a rating and review on Apple Podcasts, Spotify, or wherever you get your podcasts. If you'd like to support Kugiheroes and the stories we share, head to kugiheroes.com.au AU and follow the instructions to make a taxdeductible donation. Thank you for listening and we'll see you next time.
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A doula's key role is continuity: staying alongside someone from planning through death and after, listening to their life, making phone calls, or being the bridge between family members who cannot talk to each other.
This conversation includes a career change after three years of grief, seven deaths, but only one with real conversation, the questions that changed everything, why australians avoid talking about death, planning a death versus cleaning up the mess and from death phobic to sitting with the dying.
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