ROSE: [00:00:00] Palliative care is about quality of life and improving people's quality of life. And there is even statistics to suggest that getting onto a palliative care program can actually extend your life. And as long as that life extension has good quality, that's the main thing. 'cause living longer is not the be all and end.

And I think that's one of the things that people tend to make the mistake when they keep on accepting treatment. Oh, you'll get another three months. But what does that three months actually look like? 

CATHERINE: Welcome to Don't Be Caught Dead, a podcast encouraging open conversations about dying and the death of a loved one.

I'm your host, Catherine Ashton, founder of Critical Info, and I'm helping to bring your stories of death. Back to life because while you may not be ready to die, at least you can be prepared.

Don't be caught dead. Acknowledges the lands of the Kulin Nations and recognizes their [00:01:00] connection to land, sea, and community. We pay our respects to their elders past, present, and emerging, and extend that respect to all Aboriginal and Torres Strait Islander and First Nation peoples around the globe.

Today I'm speaking with Rose Sexton. Rose has over 40 years of nursing experience and postgraduate qualifications in palliative care. Rose has a great passion for supporting those at end of life. She holds a deep desire to open up conversations around death, dying, and end of life issues. Believing that this contains enormous possibilities for living more fully and richly.

Rose has also had recent personal experiences providing end of life support and understands the challenges, nuances, and opportunities in this space. She has a long history in the performing arts, including music and theater, and is a firm [00:02:00] believer in its transformative power. Rose has spent the past few years holding regular workshops, courses, and events in her local area and promoting conversations around death and dying, and is a qualified and experienced advance care planner.

In 2024, the Good To Go Project was established as a way to reshape the narrative around death, dying, loss, and grief in their local region. There is now a collective of like-minded individuals who have joined Rose and her business partner Nicole, as the good to go, collective comprising of end of life, doulas, funeral directors, and various other people who all hold a passion for this cause.

Rose Lives and works in Wangaratta in Northeast Victoria, both in community palliative care and as a palliative care educator for aged care and disability support workers. Thank you so much for being with us today, [00:03:00] rose. It's a pleasure. Thank you for asking me. It's great to be here. So tell me, when you say a qualified advance care planner, what does that mean?

Well, back, 

ROSE: uh, probably about 15, no, actually 20 years ago, I think the advance care planning sort of movement started, it's an international sort of push to get people talking about the kind of medical treatments they would like or would not want, and how the kind of states they'd end up in or would not want to end up in.

So there was training around. Probably 10 years ago or more 15 years ago from the original people who sort of established it in Australia. And so I did all those trainings and that's how I got to be a qualified advanced care planner. But it's, it's basically, I've got a lot of experience talking to people about, it's not so much medical treatments.

I think we, we shy away from that these days. It's more [00:04:00] about what your values are and what matters to you, what gets you outta bed in the morning, what brings you joy and to make sure that medical treatments that are made on your behalf when you, if and you can't make them for yourself are in line with those values.

Yeah. I think that's what advance care planning is really trying to do, is to make sure that people get the care that they would choose for themselves if they had the opportunity to do that. But the statistics say that I think it's somewhere between 50 to 80% of people at some point during an illness will not have the capacity to make those decisions, particularly if it's a serious illness.

And that's when, you know, the rubber meets the road and it, it really matters. You know, you can either bring somebody back, you know, you choose to treat and, and means that they're gonna continue a living, but that, that living is vastly different to what they were doing beforehand. And they could end up, you know, with a significant functional loss, uh, you could [00:05:00] end up, uh, needing care, full-time care.

And there's a lot of people who would say that they don't want that. Yeah, so that's, that's the sort of the heart of advanced care planning is to have, and, and really it doesn't need a document at the end of it. I think that people get sort of head up about that, and I think healthcare professionals can be a little bit, what's the word?

Bossy, about getting some, getting someone to write everything down. You don't have to write it down. The most important thing you can do is think about what you want and appoint someone to speak on your behalf and then talk. To that person about what you want so that they know. Don't just go ahead and say, oh, I've appointed, you know, my third daughter, but no, I'm not gonna tell her what I want.

She's just gotta be burdened with the, the need to choose everything for me. But I haven't told her what I want. 

CATHERINE: And how, you know, because obviously the, the space that you work in, in palliative care and, and with end of life planning, [00:06:00] you would've seen many examples of when it's done well and when it's done not so well.

ROSE: Yes. Yeah. Uh, a lot of people and a lot of health professionals particularly say nurses think that it's the doctor's job, but the whole process of advanced care planning should take two to three hours over the space of, you know, three or four weeks or, you know, however long it takes. Really, it's not something that you really can rush and doctors don't have time.

They don't have those three hours to spend coming back and having a chat with people because there's very little compensation available for them. You know, in the MBS there's only, I'm not too sure of my facts here, but I think there's only one or two opportunities for doctors to actually claim that time.

CATHERINE: Is that through the Medicare rebate scheme? 

ROSE: Yeah. And which is what doctors are all about. And it's usually the GP that has to do this. You won't get a specialist doing an advanced care plan with you [00:07:00] because it's, you know, my time is worth far more than anybody could possibly pay 

CATHERINE: for it. Um, but that is the challenge of the system, isn't it?

Because when you think about like someone who, and, and I'm sure you can give better examples than what I can rose, but I'm thinking about the people that I've spoken to and, and. They generally go to their GP because they may have some sort of symptoms of, of, of what they're experiencing. The GP generally always refers them to a specialist to actually then have a, a condition diagnosed, and if that diagnosis is a life limiting illness, that can then be a challenge because, you know, in that process, at that point in time, no one's spoken to them about what their options are or their plans are at this point.

Have they? 

ROSE: Yeah. I mean that, that's the worst time to start doing your advanced care plan. The best time to do it is when there's nothing wrong with you, or you might have some vague illness, [00:08:00] you know, kicking along in the background. That might point you in the direction of what could possibly happen. Say if you've got a history of, of high blood pressure or any sort of cardiac issues, you might think, well, a stroke is possibly one thing that might happen to me.

And so that's when you sort of, you, you make this plan and you think, okay, well if I had a stroke, I wouldn't want this outcome. You know, so don't, don't treat me if it's so dense that I'm gonna need full-time care and you'll have to put me in a nursing home. But yeah, the worst, the worst time to try and think rationally about what you want or not want is when you've just been told that you've got this life limiting illness.

'cause it, you know, your body's already in shock and your, your mind is frozen and you know, I'm, I reckon everyone should have an advanced care plan because none of us know what's coming for us. And any of us could end up in ICU at any TA stage and be lying in the bed and the doctors are turning to the family and saying, well.

What do you want us to do? What do you think they [00:09:00] would want us to do? And the family are all staring at each other saying, I don't know. We never talked about this. I don't know. And so the default, of course for the family, 95% of the time they're going to say treat, because I don't wanna be the one responsible for, you know, turning off the machines if that's not what they wanted.

So you're going to always have this overtreatment and the advanced care planning. So movement has sprung from the intensive care community, not so much the palliative care. People all think, oh, I'm not ready for that. You don't know. Everybody should have an advanced care plan. Now it's easier to say, I suppose, as when you're younger, the general sort of gist would be, oh yeah, treat, treat everything.

But in these catastrophic times, you know, accidents and things where there is a possibility that we can save them and we'll, we'll try and bring them back and then we'll just see what happens. But they might be end up like paralyzed or, you know, relegated to a wheelchair for the rest of their life. [00:10:00] Now there's a lot of people who would all be very happy with that and be still, yes, I wanna live and, and there's a lot of reasons why people would wanna live if they've got children or that sort of thing.

But again, you don't know unless you've. Ask them for yourself, and you've really thought about it yourself and say, is that limitation or that dysfunction, something that I'd be happy with, that I could tolerate? And it's different for everybody, and that's the problem. You can't just assume that, oh, well of course everybody would be happy to live in in a wheelchair or no, no one would, you know, choose that if they had the choice.

So we'll just. Make the choice for them. 

CATHERINE: And what I found when I was completing the advance care plan with my mom over Christmas, she's 86, she's in very good health. She's going to the gym three days a week. You know, she's, she's, she's really good. But the thing that I found that I really had to talk through with her is also like using terms such as communicate well.

If I can communicate, that's fine. I'm like, but [00:11:00] what does communicate mean to you? So I really had to, to break it down. So it can be quite challenging, can't it? 

ROSE: Yeah. And, and I've certainly seen some poor examples of advanced care planning usually done by someone who didn't have time or didn't really understand the brief.

And in the, particularly in Victoria, there's a, there's boxes that you fill out and one of them is what matters most to me. And I've seen things like family gardening, reading. You think that tells us nothing really. Yeah. Family. Again, 95% of people would say that family's important, but what is it about family that's important to you?

What is it about gardening? What does being able to get out in the garden mean to you? What? Why does it bring you joy? It's not because you know, it's so nebulous and so lacking in information that really doesn't tell us anything. What I tell, try and tell people is this document is the 3D version of you that stands up in the room when you [00:12:00] are in the bed and you can't speak for yourself.

Everyone's looking to this document to, to guide them as to what to do next. And if you've just put this is, you know, you've relegated yourself to all, all that matters to me is family, gardening and reading. You know, we're all, you know, we're three dimensional people. We've got all these things that we love and, and don't like.

And, you know, and I always say, look, write a a a one pager at the end of the, you know, attach that to your plan and say, this is what I've done in my life and what I've experienced and what I've seen. You know, what experiences of good dying have you seen and what, what bad deaths have you seen that make you.

Want the sort of things that you're putting in this plan sort of gives that all that background. I mean, I usually talk about my own plan, which is fairly radical. 

CATHERINE: Well, now you've got me intrigued, rose. You have to tell us Can Yes. Are you comfortable to share? 

ROSE: Yes. Yes. I've got a very low tolerance for any kind of, any sort of dysfunction.

My kids all know this and I have said [00:13:00] that, for example, if I develop dementia and I haven't been able to, you know, do anything about, about sort of exiting prior and, and I'm ending up in the only nursing home or needing all this care. I don't want any medications, don't gimme any medications, and I don't want, I certainly don't want like a, a feeding tube.

Or those kind of things. So, so no interventions, certainly no CPR and even feeding me. So, because I've worked in a nursing home for years and years, and I have seen people being kept alive for absolutely no purpose and no quality of life. We just keeping the body alive and that's all we're doing. Um, I don't want people to, you know, here's the airplane and, you know, bring the spoon to my mouth, certainly put the food in front of me.

I'm more than happy to pick at food, but I don't want to be fed because that, that is such a primal thing, you know, look at, that's just this automatic thing that you just keep on feeding the body and [00:14:00] it'll just keep on taking food. And I don't want that. I don't, I don't wanna be kept alive any longer than is necessary if that's my fate.

So you've gotta, you've gotta think about all these things and give the background and so on. My background is, I've worked in nursing for 40 years. I've seen some terrible deaths and terrible examples of people being kept alive beyond what was sort of beyond the natural order of things. You know, we've prop our bodies up with medications and injections and surgeries and treatments, and the body is trying, its best to say, I'm, I've had it, I'm done here.

Nope, no, we can stop this. We can give you another pill. And so then you end up with people in nursing homes that have like three pages of medications and all interacting with each other. And it's like, when are we going to allow ourselves to just naturally. Die. Yes. Yeah. And that's my manifesto. Yeah. 

CATHERINE: Rose, it was interesting that you mentioned [00:15:00] that when you were going into the detail about what you are comfortable with with your care.

The key thing that that sticks out for me is that you said, I had told my kids Yes. So how does one start those conversations with, with loved ones? 

ROSE: Yeah. I find this, I mean, it's not, it's not a problem for me. My kids are used to it. I could imagine. Roll their eyes. I'm sure they appreciate it. And I, I hear from a lot of people, you know, older people that I'm trying to do advanced care planning with and I say, well, you need to get your family together and start thinking about it.

Looking at the document, talking about it together, having like a round, a kitchen table conversation. And a lot of people say their kids don't wanna have any, have a bar of it 'cause they can't bear the thought. So it, it's tricky and that like, that's frustrating. Because really it's the only thing that we know is gonna happen.

Your parents are older, and this is the, the natural order of things is your parents will [00:16:00] die before you. Well, I mean, you don't want the op the opposite. You don't wanna die before your parent and put your parents through that. So. You know, we know we, our parents have to die. And it's just, yeah. It's, it's annoyingly frustrating for that children won't actually come to this.

And this is why I, I do what I do to try and get people talking about death and dying and to, to turn around and face it and to see that it, it's not as this big scary tiger that's chasing you and that it's something we have to face. We just have to, like, what's the alternative? You're just going to keep, stick your head in the sand and, and then be absolutely devastated and be left with questions and, oh, why didn't I wish I'd talked to my mom about this before she died, and why didn't I, you know, all these regrets and it's, it's just so unnecessary.

CATHERINE: And it's quite invalidating, isn't it? Because you are, you're saying, I don't wanna hear what your wishes and, and, and your thoughts are. 

ROSE: Yeah, that's right. And it's, yeah, it's a very selfish stance to take. For children. I mean, this is, this [00:17:00] is part of the society we live in, and again, that's why we, I do what I do.

You know, the last 120 years or so has really robbed us culturally in the west of agency over death and dying. You know, the, the advances in medical science have, you know, absolutely revolutionized the, the average age of dying. But in a way we've, well, in, in a big way, we now believe that we are all entitled to live this big fulsome life and die in our sleep when we're 85.

But that's, you know, statistically that's not correct. And so anything less than that is automatically seen as a tragedy. But it's not. It's just, this is how life is. It's sad, it's awful when someone dies, you know, apparently early. But that's the way it is. And if we're not prepared for it, we can be, you know, we can end up being sort of haunted by deaths that came too, sort of too [00:18:00] early, instead of just embracing the fact that death is a part of life.

And if we live with that knowledge every day, then we can live more fully. Because then now, now our lives are complete instead of life with this constant shadow of death. But we're always pushing it over to the side and outta the way. Let's not think about that. And it means that there's this whole area of our lives.

It's like this, this shadow in our lives that's preventing us, you know, we're constantly running away from this shadowy area, you know, don't go over there. That's too scary. And so a lot of, a lot of the time we are, we are scrambling to keep away from it. Whereas if we say, oh, death, come in, come in, let's have a chat.

Okay. I know you're there. I accept that this is part of what life is and so, you know, getting in an airplane, taking off thinking, well this could be it. Is that okay? Yes. And that, that, I mean, that's what I try and do. I actually, I was, yesterday, I was about to get a tattoo, but my [00:19:00] tattooist. I had to go to a school, a school play, and I said, you've gotta go, you've gotta do be there at those moments.

Yeah. And my tattoo is a reminder. It's a whole lot of symbolism sort of joined in together, but it's going to be a daily reminder for me that I'm gonna die. And I try and remember that every day. And because then I carry with me if I, you know, if that's the possibility that I could die today. I don't know if I go out on the roads.

Anyone who's in a car can die at any time. 

CATHERINE: The statistics are higher. And, and having been one of those statistics, I can tell you, you know, you go off to work one day, you think that's just gonna be a normal day and then your life changes completely. So it can happen, you know? Yes, I was, I was in my early forties when that happened, you know, and I, I will be very interested to see what your tattoo looks like rose, when you get it.

But it, it does remind us that Latin saying of Memento Maori, one day you will die. And it's. Something that [00:20:00] we've embraced with death. Like I know when I had my son, and that was over 21 years ago now, you know, we were asked to do a eight week course leading up to the birth. We were encouraged by the healthcare professionals to do that.

We were encouraged to write our birth plan. You know, not everyone has children, so it's crazy that we aren't as prepared in our healthcare system or in society. Yeah. To prepare for the one thing that we're all going to experience. 

ROSE: Yeah, exactly. Yeah, that's right. And we plan for everything else in our lives.

And we are taught in kindergarten to clean up after ourselves. And yet when it comes to death and dying and being dead and, and all the stuff that comes after you're dead, we seem to think that it's all just gonna magically sort itself out and we'll get exactly what we wanted or, or we don't even think about what we want, but we, we know when we're not getting what we want, when we're not getting it or we're getting something other than what we wanted.

It makes no sense. [00:21:00] Yeah. Like it, it's almost irresponsible not to have this stuff done because to leave it up to fate or whoever comes along means that you are putting that burden of decision making on them and they can sort of follow somebody for the rest of their lives. That second guessing in the guilt, you know, did they do the right thing?

And so, as I said, most of the time people will default to do everything because you know, we haven't talked about it. So I don't wanna be the one that pulls the plug. Well, you know, literally or figuratively. 

CATHERINE: And even like when our friend died unexpectedly and his two adult children, they'd never had the conversation about whether he wanted to be buried or cremated.

So, you know, even those like logistical decisions to be made after, you know, someone's died as well and let alone the administration. And I'd be interested in your thoughts in what I find when I talk to people about death, it's never actually about [00:22:00] death. It's either the lead up to the death or the impact on the loved ones after someone's died.

Mm. It is never about death itself. 'cause technically no one can talk about that that's been there, you know? That's right. Like not effectively, you know? So what I always find is it's always about the living and the choices that you want. To be, you know, whether there's someone to speak on your behalf, if you can no longer act and speak yourself, such as what you've been talking about with the advance care plan or advance care directive here in Victoria.

But you know, uh. It is never about the death itself. Is, is that what you find Rose? 

ROSE: Yes. It's, I guess because for most, most of the time when you're talking to people about this stuff, unless they are actually becoming more and more unwell, say if, if they're on the palliative care program and their, their death is sort of imminent, you know, [00:23:00] weeks or days away.

But even then, people tend not to want to know what that's gonna look like. It's interesting 'cause I would, I would wanna know, I mean, now with, with all of my experience, I do, I do know what to expect on the whole. But yeah, people are more, more concerned about how things are gonna look for the people that are caring for them.

You know, they, they don't wanna be a burden. I hear that a lot. I don't wanna be a burden. I'm happy to, you know, go into a nursing home when we talk about, you know, where would you like to die? And that's another thing that I'd, you know, I'd like to talk about. I don't know now or later. Yeah, 

CATHERINE: please go. We, we can go wherever you wanna go, rose.

Okay. 

ROSE: Well, I think, um, the idea of reciprocity, I talk about this quite a bit with patients that I see in community palliative care. When they say, oh, I don't wanna be a burden, I don't wanna bother, you know, oh, my family's busy enough. This concept of reciprocity where. People who have had the opportunity to care for somebody actually get so much out of it.[00:24:00] 

And so that's what I tell people. I say, look, you're doing them a favor by letting them help you and taking care of you. And I, I speak from my personal experience, taking care of my partner was a high point in my life. I know it sounds weird. I was euphoric after he died. It was quite strange, and we had talked about it.

He, he was quite open-eyed about all of this stuff. He knew what he wanted and what he didn't want. And me being a nurse, I could, I was, I was just so elated that I could give him exactly what he wanted. And I knew, you know, I, I, I brought all of my skills, everything. It felt like my whole life had been leading up to that point of taking care of him.

And it was just, yeah, it was just the most rewarding experience, or one of the most rewarding experiences of my life. So I always encourage people to think about, don't sort of shut down that idea that allowing people to care for you is a bad thing, you know? Like we, we need to encourage it. And, and [00:25:00] again, across the deathbed, you know, there's a lot of people who wanna just run screaming from the room, and they're constantly asking, how long is this gonna take?

You know, and you've gotta sort of drill down and find out why they're asking that. Sometimes it's because they can only take four days off work or, you know, they've got other things going on. And, and usually it's because being in this space, watching my parent or whoever dying is just, I'm finding this just so confronting that I can't stand it.

And so I always try and flip the script and say, look, this is. This person only gets one shot at dying, and this is like sacred time. Whatever sort of religion or spirituality that you have, it doesn't have to, you don't have to be religious to see that that dying time as truly sacred and to encourage people to sort of just be in that, be your normal selves across the bed.

You know, chatting, talking, laughing, remembering what the person who's dying, remembering funny stories [00:26:00] about them or how much they mean to that person. And then, and so it's, you're hoping that the person is, is hearing something and so they're sort of being accompanied. On that journey, they're, they're hearing all these things about themselves, who they were and what they meant to the people that they loved.

And then the other part of it is the kind of bonding that can go on around the, around the bedside between the families. You know, you don't, you don't get this kind of opportunity very often to just sit and, you know, we call it vigilant. You just sit in this space with them. It's, it's sacred time, but it's, it's also, you can't recreate anywhere else.

You know, it's unique when it, it mustn't ever be rushed through or belittled or, you know, invalidated. Hmm. 

CATHERINE: And what do you find with your experience and being with people when they are dying in their final days? What is it that people want? Hmm. Yeah. 

ROSE: Gosh, [00:27:00] that's a big question. Um, 

CATHERINE: yeah, like, is there any, any consistency?

I know that you've said that everyone is very unique and everyone's very, you know, individual in their choices and their preferences. But when we come down to our base elements and we are facing death, is there some common threads that you find? 

ROSE: Hmm. I would say, just off the top of my head, because I actually haven't thought about that, it would be making sure that the family are, are all good.

You know, people are still thinking about the people in their inner circle and worrying about them. But the, the dying process, and I use that term deliberately dying isn't just one moment in time, it's a process. And so, and the body slowly dies. It, it gradually lets go of things. It is a, a real letting go of letting go of interest in.

You know, outside world, you know, politics and whatever else in the news, and then, then sort the outer [00:28:00] circle of people. You just, you just don't have the capacity or the interest. And so your world gets smaller and smaller. You gradually lose the interest in eating and drinking and, and so everything gets sort of quite focused, uh, on, I guess your own symptoms and, you know, making sure that we've got, uh, their symptoms under control.

And then, yeah, I think most of the time people are, are concerned about how their family's going, but it, yeah, it's, it's interesting the, you don't often get those, you know, those great deathbed confessions or any, it's not like on the telly a lot of the time, 

CATHERINE: but that's, that's, that's good to know because not everyone is as connected to the dying process as what you are.

Mm-hmm. So. For someone who hasn't experienced that, they, they're not aware if there is that revelation that we see Yeah. You know, right before you take your last breath. Yeah. A lot of people don't have the privilege of [00:29:00] being in that space when someone does die. 

ROSE: No, and I, I agree that it is a privilege, it's incredibly privileged position and, and to support other people.

So I've, you know, worked in hospital and aged care for many years, and now I'm in community palliative care, which means that we support the family and then leave them to it. We are not usually present when the person dies. But yeah, it's a, it's a great privilege to support family and to empower them to do this for themselves.

A lot of people would say, oh, I wouldn't know what to do, but when the time comes, they just step up and do it. I think, um, there's been some talk about, you know, the, the basics sort of things when your life is coming to an end. Things like, you know, just saying, I love you. I'm sorry. Forgive me. Thank you.

Those kind of things become the most important things. And again, in community palliative care, you know, I'm not there all the time for those kind of conversations. I don't, I don't see what's going on between the family members, [00:30:00] but I know for myself, my own experience, that's what it came down to, is, yeah.

I love you. I'm sorry. Forgive me. Thank you. 

CATHERINE: Thanks for sharing that. Rose, can you just explain for people who are unfamiliar with palliative care is when you go into care generally in a, in a facility, when you have a life limiting illness, that's perhaps what some people traditionally think or that's where you go.

Can you talk us through what community palliative care is, what it looks like, what the differences are, just so people can get a broad understanding Yeah. Of just exactly what it is, because I think there's a lot of misconceptions. 

ROSE: There is, yeah. And we're not gonna change the name. It's not just the, the push is to do that.

So palliative care comes from the Latin word pal, which means to cloak. And so palliative care kicks in it. It can. Exist alongside treatment so you don't have to be stopped [00:31:00] treatment and be in the last days of your life to get palliative care. The one thing we would, we always wanna see as the palliative care team is early referrals.

And I think specialists and, and gps are getting better at doing that Now. We can't get too early because there's only a limit to the amount of work that we can accept, but it's great if we can get somebody on the program sort of within the last 12 months or six months of life. So we, I mean, and you know, like it's, it's very hard to predict these things.

Of course, you know, sometimes we have a general idea and, you know, statistic, we've got statistics to back us up to say, this is probably what's gonna happen based on what you've got wrong with you and what we're looking at. And so palliative care is about living well as you can for as long as you can.

And so there, there's nothing in there about death is there. So palliative care is about quality of life. And improving people's quality of life. And there is even statistics to suggest that getting onto a palliative care program can actually [00:32:00] extend your life. And as long as that life extension has good quality, that's the main thing.

'cause living longer is not the be all and end all. And I think that's one of the things that people tend to make the mistake when they keep on accepting treatment. Oh, you'll get another three months, but what does that three months actually look like? That's the question that no one asks or that people don't tend to ask 'cause they're a bit frightened to hear the answer.

Uh, you know, look, I could say, oh yeah, I might die in a week if I don't get treatment, but I, if I get treatment, I can live for another three months and say, oh, well three months is good. I, I'll spend that time, you know, three days a week getting chemo, feeling sick, having no energy, and not being able to go out or meet anybody because I'm too worried about getting infections.

I can't go traveling, I can't eat my favorite foods. I can't see all the people I love. So what's the point? Why would what? What's those three months of just suffering? Three months of suffering. And so palliative care [00:33:00] comes in. We help you with symptoms. Most PAL care teams have like a social team to support you with counseling.

There's support for social supports like allowances and getting access to your super early. If you're diagnosed with a life limiting illness, you can access your super early if you are trying to say, take a big trip or do something special, or even just pay for care or whatever you need that money for.

And we also have access to equipment, so. It's a total palliative care is holistic care. So we look at the whole person and say, what is it that is important to you? You tell us and then we'll try and make that happen. You know, we'll try and put those things in place, you know, what are you worried about?

Let's talk about death and dying. What is it? You know, we, we are the ones that are willing to go there when perhaps no one else is. 

CATHERINE: It sounds like it's a much more comprehensive service than just somewhere where do you go to [00:34:00] die? You know, at the end. 

ROSE: Yeah. And, and community palliative care supports people to die at home.

That's what community is. Just, again, statistically, apparently, I think they say about 75% of people when asked outta the blue say they would prefer to die at home, and we are achieving around 20%. So now there's, there's a whole lot of reasons why that doesn't happen. It's not just a failure of the system.

Sometimes the care needs of the person are so high that the family can't do it or that they just don't have, you know, it just doesn't work, doesn't happen. But there's a lot more that we, we like to see happen that that isn't happening at the moment. You know, and a lot of people say, oh no, I don't wanna die at home.

'cause that, I wouldn't want all those memories for that person. And sometimes that needs to be unpacked as well, because, yeah, a lot, we make a lot of assumptions. We sort of go straight trip over a whole lot of ideas without actually looking at them and saying, no, [00:35:00] actually it would be nice. I, I, you know, the family might say, well, I want to look after you at home, because it's such a, so much more personal and natural sort of process.

So much nicer to die at home than in a hospital. I mean, hospitals are the last place you wanna die, in my opinion. It's, it's great. Like they do have the capacity to do that, but it, it's not ideal. You know, you can't get all the people in the room. Uh, you can't have people coming and going. Sometimes there's COVID on, so you know, you, you've gotta wear a mask and it's all that, and you, you're governed by the staff and how busy they are.

And it's just, it's not the best place to die, in my opinion. Now about palliative care, the availability of palliative care, like as an inpatient, you know, if you've got the idea that you don't wanna die at home that you'd like to die in, in a hospice setting, those settings are pretty few and far between.

They're very hard to find. There are palliative care units, dedicated palliative care units. There's only a couple in the state. And a lot [00:36:00] of them are more geared towards sort of managing complex symptoms. You know, you might be struggling with a, an illness, life limiting illness. You might be still having treatment, but you've got this troublesome symptom or you're really unwell.

So they'll put you in a palliative care unit and you could stay there for three days, you know, two weeks or whatever it takes, and then you go home. But the idea of just sort of saying, oh no, I'd rather go to a hospice to die. That just isn't a thing that's commonly found. So for example, here, the only place we have for anywhere between Melbourne and the border in Albury is the Mercy Hospice across the border in Albury.

Right. That's, that's a very big area. And if you are wanting to go and die there, but you live in Wangaratta or you live in, or then you, all your relatives have to go up there and visit you every day. You know, just impractical to expect to be able to just be admitted to. Somewhere to die. Yeah. And, and that [00:37:00] is, that is a real difficulty, which means that we have to, we have to plan, we've gotta be aware of what's around and what what's actually possible for us instead of just.

Putting our heads in the sand and hoping it'll all work out in the end, and then finding out that, no, actually it's, I'm not getting what I wanted. So the, you know, the sooner that you can start looking at what the resources are available and knowing what's what you can do, the better you'll be. Because maybe it is that you're living here wherever you are in a rural area, but you've got lots of relatives in a more sort of urban environment like Melbourne.

So you'd say, well. I'd prefer to go there. So I will move myself down there and get connected with all the resources down there. And I've chosen a spot that, you know, like a, there, there is a, a palliative care unit that I'd like to go to when, when the time comes, 

CATHERINE: it really is all about planning, isn't it?

ROSE: Yeah. Yeah, it always is. 

CATHERINE: And tell me, is community palliative care the same as [00:38:00] hospice? Home hospice? 

ROSE: This is the difficulty. There's, there's lots of different terms. Um, yeah. Home hospice is usually a private enterprise, so the hospice is, there's, uh, I think it's about, well, no, I won't say there's probably three or four I think in, in Victoria, and they're usually partly privately funded.

They do get funding from the government, but they, they have like a, a source of private funds as well, and so they sort of sit a bit outside the usual system and they sort of match to their own, the beat of their own drum a little bit too. And they, they do talk about the postcode lottery in Australia of palliative care because it depends on where you live to, what you, what you get, what services are available to you, and how much care you can, you can access.

CATHERINE: It's great that you, you brought that up because it was something that when I interviewed Camilla Rowland from Palliative Care Australia, who's a CEO, when I interviewed her last year, we talked about that. But you are living in a [00:39:00] rural area in Wangaratta, in, in Northeastern Victoria. What does that look like?

What's the impact for you for palliative care there, you know, compared to perhaps what services may be available in the city? 

ROSE: Well, we've, we're a small team. There's only, like, on average, there's like two or three nurses on every day during the week. And then, you know, sometimes when we can, when we've got the capacity, we work on the weekends as well.

And so we are busy, you know, we, I don't know how many referrals we get per week, but sometimes it's pretty high. And so we are sort of struggling to keep up with going out and seeing people on the regular. Um, and then we've gotta keep juggling the patients. We do have our A books and we've gotta keep on checking in with them and making sure that they're okay.

And then there's times when we've got. Just pivot. Like one day we'll get a call and say, this person wants to go home to die and they've got, you know, last 72 hours of life or something. And so we have to just bring all of our resources into that space and [00:40:00] do a, a quick turnover of, of getting someone home and then supporting the patient, supporting the person's family, getting all the drugs ordered and talking to the gps and getting the district nurses who do in.

Rural model. Generally our team are more sort of coordinating care and the district nurses support our work by going to visit, do regular visits to people who are sort of redeemers stable or they may be sort of declining at home. And so the district nurses will do those regular visits and we just keep in touch with them on the phone and go out less regularly and see them.

CATHERINE: And so you are connected, the community palliative care model for you is connected with the local health network that is government funded? 

ROSE: Yeah. We sit with Northeast Health. 

CATHERINE: Yeah. And then I would be thinking then that your catchment area would be huge. 

ROSE: Oh, that's the thing. 

CATHERINE: Can you give us an idea for someone who's unfamiliar with that area?

Yeah. Just how large we're talking. 

ROSE: Well, our fur, the furthest one [00:41:00] away is an hour and 20 minutes. 

CATHERINE: Yeah. 

ROSE: Um. Yeah, so unfortunately we, we have the Alpine Valleys, so Bright Myrtleford and Mount Beauty, 

CATHERINE: so that's also hilly area. 

ROSE: Well, actually no, they're in the foothills. Like they're Okay. Yeah. So we don't go up the mountain.

Yeah. I think actually we do cover Falls Creek, but I've had, I think we've only had one or two people ever in Falls Creek, I guess. And man, Hotham too. It's, it's fairly rare. That we would have somebody dying in those places because they tend to be sort of more holiday sort of areas and even, and seasonal, the people who who live there don't necessarily live there permanently.

Um, but the problem with part of it is that we, we try and provide an on-call service for people. So when, when it is time that they're, they're in the last days of life and they, they need more care and the family need care. We like to provide an on-call service so that they can, uh, call on somebody if something goes wrong with the [00:42:00] medications they're giving or that they just need advice and we can't provide, uh, sort of physical on call for people down in the alpine valleys 'cause it's just too far.

It'd be pointless. Mm-hmm. Being called up and say, oh, I'll be there in, in an hour and a half. And so those people don't get that on call. They still get, the district nurses down there are fantastic, but if they, if someone in those, in those areas is supporting someone to die at home, they're on their own sort of outside of office hours.

They do have telephone support. We, we engage an on-call service to support all of our patients for 24 hours a day. But if they need someone to go out there, there's no one to do that for them. Which is, yeah. And that's just because they live too far away from where this, our service is situated. 

CATHERINE: So it seems to me rose that when you are in a rural area, it seems even more vitally important that you, you know, you, you [00:43:00] are doing your planning earlier.

You're aware of what resources are available in your local area before you even need them. 

ROSE: Yes, absolutely. And I think that, this is why I love this, the compassionate Communities model, which is my. You know, my passion now is, is to try and create or to install the install's the right word. Um, so Compassionate Communities model is something that's, again, an international movement.

It's been around for probably 15 years. I think it was created by a couple of physicians and researchers. One of them is Australian and they have this vision of a community where everyone knows what to do and everyone, you know, everyone wants to help and they know what to do, which is, again, going back to before the funeral industry in medicine took over death and dying and robbed us of agency over it.

Everyone did know what to do. You know, that we had, like, if someone dies, [00:44:00] the, the kids go out and do the knocking on the doors and say, this is what's happened. And then everybody knows, they immediately sort of galvanize into action. They know what to do. They, they know what's gonna be, oh, oh, we'll get this woman, she knows what about laying out the body.

And they'll put 'em in the front room and oh, the, the men will go up and dig the grave and other people will come along with food. And, you know, this is just a natural thing, you know, life and death. This is how it happens. It happens in the community. And we, we all just sort of, we have our roles or things we know that need doing.

We just do them. And so we've got to sort of like reverse. It's a reverse engineering. We have to reclaim this for ourselves because the tsunami's coming, I think they call it a tsunami of death, you know, peak death, they call it 

CATHERINE: the gray tsunami. 

ROSE: There's gonna be this peak death, which is. Deaths are gonna be increasing constantly over the next 20 years.

Palliative care teams can't keep up and [00:45:00] they, they neither they should. There's no need. You don't have to have a palliative care team, but you shouldn't have to because death and dying death is a, a normal part of life. It's a natural event. It is not a medical event. It's a social event. And if we can somehow empower, re-empower ourselves to take it over and say, yeah, we all know how this works.

We know what to do, we know where to find the resources, and we know how to support somebody. We know how to talk to people who are nearing the end of life, and we know how to support the person who's supporting that person. We know how to talk to them after the person's died. We know how to manage funerals and home funerals, and it's just talked about and everybody is comfortable or, you know, to a very, to a greater or lesser degree, just accepting that this is, this is what life looks like.

And that's why I see the end of life doula role as in some ways we are sort of pioneers of this. The old ways, bringing everybody with, you know, [00:46:00] teaching and empowering the community to, to say, you know, you've got this, we can do this ourselves. We don't have to always defer to the medical world or always outsource our afterlife options to a funeral director.

You know, there's, there's a lot more options out there than you, than you would think. And you can do it all yourself if you want. You don't have to have a funeral director. And you know, what choices are you making about your body after dis you know, your body disposal options. Everyone thinks, oh, well it's cremation or burial.

I think I'll take cremation because it's better for the environment, which is incorrect most of the time in Australia anyway, it's worse than traditional burial, which usually is a surprise to people and that there's options like natural burial, there's even now water cremation available. And what is most exciting for me, and I hope I live long enough for it to be established in Australia is what they call natural [00:47:00] organic reduction or, you know, colloquially known as human composting.

Now it's, it's legal in some places in the US and there's plenty of people on the ground in Australia trying to make that happen in Australia. And I, I really hope that that comes into being, because that's what I would prefer. It's the most natural. It, it actually gives back to the environment rather than every, every other option is sort of above the line in terms of the drain on the environment, but natural organic reduction actually sort of goes below the line and, and starts to give back.

CATHERINE: And I think at the moment there's a petition for New South Wales to interest for, for trials. Yeah. At the moment. That's so, so yes. It's certainly gaining momentum here in Australia. 

ROSE: Yes. And 

CATHERINE: it's interesting that you talk about that. I always refer to even our architecture in Australia being a testament to when funerals were in the, the power of the people [00:48:00] at home because that's the whole reason why we had a, a parlor in the front of our house because that was the room that you laid the body out in.

Yeah. And, and everyone would come and pay their respects. Yeah. And for me, I remember. That it was the most formal room in the house. And as a grandchild, I was never really allowed in there, except for on special occasions. Yeah. And it was where my grandparents kept their lollies, uh, yeah. In a, in a glass jar.

So, so that's what I remember it for. But, but yeah, even our architecture talks to a time when we, we did funerals within the home, and it seems, again, it comes back to, you know, knowing people's choices. So again, it comes back a full circle to where we started Rose about having conversations. 

ROSE: Yeah, absolutely.

And, and. A lot of the time people are carrying around these unexplored biases. And if we, unless we sit down and actually talk about it, we don't [00:49:00] actually know for ourselves if we don't have the opportunity to think about it or we don't take the time to think about this stuff. It's sort of like, oh God, I never thought of that.

Oh yeah, that's interesting. Ah, and, and you discover these things as you start to talk about them, but if you never get the opportunity to talk about them, then it's just, it's all left as this sort of murky, you know, I don't wanna, I don't wanna think about it. 

CATHERINE: And so, can you tell me, you know, how did the Good To Go project get together and what sort of work are you doing within the community up there?

ROSE: Yeah, so last year, uh, Nicole and I wanted to put on like a, a, a good to go festival we call it, which would comprise of, you know, a series of talks and information sessions, a couple of film screenings and some death cafes. So some events to sort of, to raise the profile of this death and dying and sort of get people talking about it.

And to sort of [00:50:00] have like a, it was over the space of a a month and it was sort of, I think sometimes you sort of gotta get, do a lot of things in a short space of time to, to sort of, to get attention, get people's attention. And we got some funding from the Murray Primary Healthcare Network, which was just fantastic there.

It was so good to get that money 'cause it enabled us to hire venues and everything that Nicole and I did was all voluntary, but it was, it was just great to have money to sort of put on different events that we wanted to do. So we learned quite a bit from that. The first one was our, our audience was much older than we expected and that July and August really isn't the time to be doing something like that 

CATHERINE: because it's cold.

It's a bit cold. 

ROSE: Yes. I was thinking, oh, it'll lead up to, you know, dying to know day. It'll be really great. But it's sort of, yeah, I realized it just, it's not the, the right time to be trying to get people out. But from that, we had a little bit of money left over. And then Nicole being who she is, she's an [00:51:00] amazing connector.

CATHERINE: And do you wanna tell us a little bit about Nicole? 'cause she's unable to join us today on the call, but she founded End Stage matters with you, didn't she? Yes. Yeah. 

ROSE: Back in 2017 or 18, I think. And so she and I have been sort of working together on this work for the last six, seven years. And we both, you know, she's, she's run a death cafe in, in Beechworth for the last three years.

I run one in Wangaratta that I started this year, which is great. And so she knew a few people and so she was sort of saying, oh, well let's get them onto the team and let's help. So I think, you know, the more people working together as a team, the better. So we had about, uh, seven or eight people last year that we'd sort of.

Discovered from various sources and Nicole had picked up and, you know, travels who are all passionate about this as you know, the the way we are. And then ever since then, we've just been gradually adding and now I think we've got about 18 or 19 people in the collective, which was what our original vision That's amazing was for end stage matters was to create like a doula hub.

[00:52:00] Because I think it's good for doulas to work together so that there's a team of people that can provide various services and supports for people. Because a lot of the time doulas have different focus. So mine, you know, I've got all this nursing background and even though as if I was in there as a doula, I wouldn't be providing any nursing or medical advice or anything.

I've still got that, that experience. But whereas other people have a more of an interest in say, getting advanced care plans or wheels and things. Sort it out and help and supporting you that way. Other people might say, well, I, I just wanna sort of sit vigil with people when they're nearing the end of life.

Or, I'm a really good, I'm a, I've got counseling skills and I can help you with, with that. So if we had a doula hub, then it means that people can go in with their particular skillset and and meet that person where they, where they need them. And also, you know, if I'm busy or I'm working or something, then and they need a doula, then someone else can go out.

And we also had [00:53:00] the idea of having on our, not so much on our books, but people who we could recommend, so like physios or, oh, here's a good gp, or, you know, or whatever it is that, that people are trying to access. We could be that, that hub, that one stop shop, but we both ended up with fairly busy jobs. And so that side of things didn't eventuate.

But now with the Good to Go collective, it's feeling like this is got momentum and that we're all sort of really keen on pushing forward. Our tagline, which is reshaping the narrative around death, dying grief and loss. So this year we have decided to just offer different events through the year instead of just all concentrating in one particular spot on the calendar.

So yeah, we, we had the Good To Go Expo in two different venues in at the end of May, and we have regular death cafes around the area. We've got a website, which is, I'll push it now G two G, so that the letter [00:54:00] G, the number two, and the letter g project.com au. So, and 

CATHERINE: we'll include that link in the show notes as well.

Yeah. So people can go through that. 

ROSE: Yeah. 

CATHERINE: But it sounds like a, a very good model when you work as a collective, especially in a rural area, with some of the challenges that you were talking through earlier with resourcing and distance and Yeah. And it sounds like it's just a very practical way in which to ensure that none of you burn out and you support each other.

ROSE: Uh, yeah. And I think just the idea of the doula, it is gaining. Momentum. It's difficult because it's not funded by anything, so people have to pay, you know, the full price. You can't claim it on in any sort of health insurance or, and the government isn't recognizing doulas as yet, even in the packages and things, which is disappointing because statistically they say that for someone dying at home or even, you know, with approaching end of life at home, they will spend as the most an hour out of every day with [00:55:00] some kind of health professional.

And the rest of the time you're on your own. Either with your family or on your own. And that's as much as the, the formal supports can offer you, really. And so what are you doing with the rest of that time? And given sort of how, how poorly we understand death and dying really and, and the lack of literacy around that.

I think death doulas provide this great. Service in the, in the gaps there for people. You know, there's a lot of people wandering around not, not knowing what they can access and, and not having anyone to talk to and feeling unsupported. 

CATHERINE: And it is challenging. Even speaking, you know, from, from my experience when our friend died to find everything is a real challenge and you're also generally suffering some sort of trauma if it's unexpected or, you know, even if you've been diagnosed with a life limiting illness, you're not in the head space to actually navigate a healthcare system.

And then if you have the added [00:56:00] challenge of being in a, a rural area Yeah, yeah. It, it can be quite complicated. And so I, I really appreciate you talking through that sort of challenge and the fact that doulas aren't recognized at the moment because obviously that's a space that, as with we. Age, with our age, our gray tsunami and all those baby boomers end up getting older and needing care.

It will actually be their children and their loved ones that will be responsible for providing that care. And that example really gave us a snapshot of what we can expect to see coming and what our roles might be moving forward. Yeah, 

ROSE: yeah. And we know how challenging it is, you know, for this so-called sandwich generation.

Even now, you know, struggling. You know, I would say probably Nicole's right in the middle of that. Now her partner's mother has just died, but she's been in, in care with dementia for several years. And so, you know, there's the burden of, oh, not that much burden, but it's, there's the, you know, having to sort [00:57:00] of care for her and support her and now her own parents.

Uh, requiring a bit of support and Nicole's the one that's sort of having to step into the breach and she's got children who are having children of their own. And so she's sort of being pulled and that's part of the reason why she's not here today, is that yeah, she's busy trying to juggle all those things.

So she's a living example of the, the pressures that is the sandwich generation is under. 

CATHERINE: And I think that's a, a really good example. And thanks for, for using, you know, that example. I'm sure Nicole won't mind. And given the fact that that is what we are facing and it's the statistics that it, it is in the process of shifting there.

Now how can we start conversations with our loved ones about this? Whether it's the, the person who, such as myself with a, a mother who's 86 and a son who's 21, how can we, we start, 'cause I'm referred to what is the sandwich generation being stuck in between those two. Mm-hmm. So, so how. [00:58:00] How do we have conversations with our loved ones?

How do we initiate them, rose? 

ROSE: I think if you always put it in terms of it being a, a loving act, whatever you're doing, whatever you're trying to do is coming from love and concern. Whether it be a child talking like a grown child, talking to their elderly parents about wanting to sort of know what their wishes are and saying, I, I do, I'm saying this because I love you and I don't wanna make the wrong decision.

Whether, and if it's the parents trying to talk to their grown children saying, I wanna give you this gift. I don't want you to end up being in a place where you, you don't know what to say or do you know what, what would happen if you had to speak for me? What would you say? You know, and saying, I'm, I'm trying to do this out of love.

And yeah. And, and I guess referencing, you know, the worst case scenario. What's the worst thing that can happen if we. If we don't do this, and, and you know, if you have to, you [00:59:00] can push that, that barrow and say, you know, there's awful, awful situations where people have been left with having to live with the burden of the decision they had to make for the rest of their lives.

And when you carry that kind of guilt or burden around with you, it makes you even more afraid of your own death or, yeah. Sort of, it, it just messes with you. 

CATHERINE: Yeah. The ripple effect is, is quite significant, isn't it? Yeah. Yeah. It really is. All because we're too scared to have a conversation. Yeah. 

ROSE: About the only, the only thing we know is gonna happen.

CATHERINE: Yeah. Yeah. Look, I, I can't thank you enough for being with us today, rose. And please give my very best, Nicole I'll, I'll, and we will make sure that we, we pop those links so people can certainly find the support that they need, at least around the Wangaratta Northeast Victoria area. But thank you so much for, for spending [01:00:00] time with us today and giving us a, a few hints on how we can actually have conversations.

ROSE: That's an absolute pleasure. You know, I could talk about this stuff all day. No drama for me. I love it. 

CATHERINE: Well, thank you, rose. I really appreciate it. Oh, thanks, Catherine.

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