Lady of Death

How A Care Navigator Helps Families Face Death With Dignity

• Robyn O'Connell • Season 2 • Episode 13

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Choice at the end of life isn’t abstract—it’s practical, emotional, and shaped by real laws, real timelines, and real families. We sit down with VAD Care Navigator Laurie Draper to walk through how voluntary assisted dying works in Victoria, what the safeguards look like, and why so many people feel a profound sense of calm simply by unlocking the option. From the first assessment to the final permit, Laurie explains the steps and the four‑to‑six week path that leads to pharmacy readiness, all while keeping palliative care in the frame.

The conversation gets candid as we explore common fears—loss of control and dignity trumps pain for most—and the reality that roughly 35% who receive the medication never use it. Family dynamics surface too; what looks like resistance often masks grief as loved ones confront the immediacy of death.

Looking ahead, we unpack proposed Victorian reforms to potentially allow patients to choose their route of administration. Through it all, Laurie's perspective is grounded: people considering VAD aren’t choosing death; they’re already dying and seeking agency over the when and how. If you value honest language, person-centred care, and practical guidance at the end of life, this conversation offers clarity without judgment.

If this resonated, follow the show, share with someone who needs it, and leave a review to help more listeners find clear, compassionate conversations about death, dignity, and choice.

Have questions about death, dying or the funeral industry? Email ask@ladyofdeath.com.au to have them answered in a future episode.

Robyn:

Welcome to season two of the Lady of Death Podcast. My name is Robyn O'Connell, otherwise known as the Lady of Death.

Robyn:

Last season we chatted to people who worked in and around the industry of death, dying, and funerals. As you would have heard in the first session of this season, as well as those types of roles, I will also be talking to those more on the peripheral of it, yet still are deeply affected by death.

Robyn:

I'd love you to follow the Ask Lady of Death page on Facebook and leave comments or questions there. Or just send me an email to the address that I will share at the end of this podcast.

Robyn:

As you know from previous episodes, I don't shy away from sensitive or divisive topics because they are often the ones that matter the most. If a particular topic doesn't align with your personal values, I completely respect your choice to skip it. My goal is simply to offer you the information you need to stay informed and hopefully offer a deeper understanding. To this end, my guest today is Laurie Draper, who is a Voluntary Assisted Dying Care Navigator.

Robyn:

Welcome, Laurie.

Laurie:

Thank you. Thanks for having me.

Robyn:

Firstly, tell us about yourself. Who do you live with, pets?

Laurie:

Um, okay, so um I'm a mum. I've got, I live with my partner and my three children. We are deep in teenager angst phase of our life.

Robyn:

Tricky times.

Laurie:

Yeah, tricky times. Um, so yeah, three children, a little rabbit called Muchacho, and that's our and my partner, and that's our little family, family life.

Robyn:

Awesome. Yeah, you are a voluntary assisted dying care navigator. What is that?

Laurie:

Yeah, it's a good question, it's a really long title. So by background, I'm a registered nurse. I've been a nurse for 20 years, and so a voluntary assisted dying care navigator, we're pretty much a catch-all for anything and everything VAD in Victoria. So we provide information and support to patients and families calling. You don't need a referral to talk to us. And so we have lots of patient input. We do lots of education to health services, aged care facilities, doctors. We assist the doctors a lot with actually completing the voluntary assisted dying training and then working with them in seeing their patients, assessing their patients, we obviously don't assess the patients ourselves, but we provide a lot of support to the doctors. And we continue that support right to the pointy end sometimes of actually being with a person when they might self-administer the medication, or being with them and with the doctor as a support for everyone, when a doctor is providing practitioner administration. So our role is very big and very varied and can kind of change day by day depending on what happens when the phone rings.

Robyn:

So you said that you're a nurse, is that the qualification you need to get into this area, or do you have different backgrounds of people that you work with?

Laurie:

So we need to be ARPRA registered or with a you know a professional health professional uh registration agency. And so most of us in the navigator service are nurses. Having said that, one of our care navigators is a psychologist by by her background. Um, and in the past we have had social workers, but there is a health qualification you know required to be in the care navigator service. Yeah.

Robyn:

Right. And who do you actually work for? Like who employs you?

Laurie:

I'm employed by Peter McCallum Cancer Centre, and we are funded as a statewide service by the Department of Health. So we're we're based at Peter Mac. They host our service, uh, but we are for anyone and everyone. We're a statewide service.

Robyn:

So tell us how people react when you tell them you work in this type of role. I'm you know, you're the sort of person that like me as a funeral celebrant, you go to a dinner party and people say, What do you do? And you tell them and they go, Oh.

Laurie:

Yeah, there's a bit of that. I still, yeah, I get a bit of oh. And it astounds me that six years in, I still get people that say, "Oh, is that a thing? Is that legal?" Lot lots of intrigue, lots of curiosity. I think. Yeah, lots of curiosity.

Robyn:

So for those who listened to the previous podcast with my chat with Liam and Toan about their dads dying, Liam's dad, uh, as I explained at the time, was my husband's best friend. And so we actually applied for VAD because he had motor neurone disease. So he was in a but we were talking very early days. It would have been 2019 I think, not long after it came in in Victoria, and it was a a really, really, really complex process. And I think that one of the things that surprised me was that how long everything took when you were doing it. N ow, I understand from as a funeral celebrant, and I've done a few people who've who've chosen VAD, and I know now that the process isn't as onerous and isn't as as as much as what it is then, but it's still very complex, isn't it? So can you explain to us kind of what the process is?

Laurie:

Yeah, yeah. And 2019, uh like I joined the service in early 2020. So I wasn't there right at the beginning, but not long after. And there was just that real, we had such a lack of doctors back when it started. The law came into effect, the patients were ready, but the doctors kind of the doctors weren't, and the service wasn't. And so things took a long time simply to get to get the right doctors to see the right patients. And sometimes there were there were times where we couldn't get those doctors to see those patients because they just they didn't exist in those areas. Thankfully, things have improved since then. We've got many more trained doctors, and we are in most cases able to meet most people's needs if the time kind of allows. But the the process requires that currently in Victoria to be able to access VAD, the person needs to be assessed as eligible by two different doctors who have both done the VAD training, and one of the two doctors must be a specialist in the person's underlying illness. So if someone has cancer, one of the doctors must be an oncologist. They're then assessed independently by the two doctors against the eligibility criteria. And those are that a person needs to be an Australian citizen or permanent resident, they need to have lived in Victoria for at least the last 12 months, be over the age of 18, have full decision-making capacity around their VAD request, and have a terminal illness likely to cause death within the next six months if it's a cancer or end stage organ failure, or within the next 12 months if it's a person with a neurodegenerative condition.

Laurie:

And so the person moves through the process in seeing the first doctor for an assessment. All the assessments get uploaded through an online portal, and then there's an appointment with the second doctor. Just two independent assessments to ensure not only that a person meets all those eligibility criteria, but to understand what their reasons are behind wanting to access VAD. Not necessarily that there's right or wrong, but just trying to understand, you know, where people are coming from and ensuring that there aren't things that we could assist with, you know, ensuring that people are linked in with good palliative care and that this is not being a replacement for that. Ensuring people understand that all they're doing by going through this process is unlocking an option that they may never use. They may actually just get a great deal of relief by knowing that it's there, and that's we hear that a lot. And of course, ensuring that the person's not being coerced by anyone.

Laurie:

And so the two doctors do their assessments independent of each other. There's a third and final visit that must be spaced a minimum of nine days after the very first assessment, and that that time the person makes a final request. And it's at that point then that the doctor can apply for the permit. And the permit application turnaround time can take anywhere from sort of two to five business days. But once the permit's granted, the doctor's notified, they write the prescription with the statewide pharmacy service, and the person is notified, and it's then completely over to them if and when they ever call the pharmacy service and request that medication to be delivered to them. And we tell people to expect that that whole process from the first assessment to being in a position to call the pharmacy is likely to take about four to six weeks, depending on where you live in Victoria. (R: Right). And sometimes it can be a bit sooner, but we like to set expectations.

Robyn:

And and my understanding is that a lot of people, and I've heard this through funerals that I've done, a lot of people, it's about being able to have that choice rather than actually taking the medication. So I think it would probably for me be equal balance of the people who've actually taken it to the people who've had it but not taken it.

Laurie:

Yeah. Yeah. A lot of people do just say that to us. I don't know if I'll ever use it. I just really want to know that it's there should I need it. And we see, we see the relief that people get just knowing that it's there. It's like a weight off their shoulders. Oh, that's I can go on doing whatever it is I'm doing with however much time I've got left, but I know I've got that there as a bit of an insurance policy, really. And statistically, it's about 35% of people who have the medications available to them that don't ever use them.

Robyn:

It was really interesting when Tony was looking into it. So his own doctor had to do the training, and and he said it was 10 modules or something, and he was about halfway through. Because with MND and those things, they can't self-administer. So they have to have a medical person administer for them. There were only two specialists at that stage who were trained with MND. Hopefully that's improved by now. And it was knowing that the process at least was underway that was helpful, that being able to be in charge of your own path of doing it. And I know that's a very divisive thing, but for some people that's really, really important. And he had already chosen, he had told us who he wanted to be there when it happened, and he felt quite in control of things. However, at that point in time, and I don't know whether things have changed since then, at that point in time we requested that perhaps he could see those two doctors who specialised in it on telehealth because that was what thing. But at that point in time, we were told that we couldn't do telehealth because telehealth was a Commonwealth thing, and the Commonwealth legislation didn't cover that. And we're like going, this is crazy. Has that changed? Are they now able to do telehealth or is it still the same?

Laurie:

Unfortunately, that still stands. Yeah. So the Commonwealth Criminal Code that sits over the top, which prohibits the transmission of any information that may be seen to be inciting suicide via a carrier service. So phone, um, email, fax. It still stands. And whilst we know in Victoria and in the other states where um where there is VAD legislation that this is not suicide, it's a legal, it's a legal end-of-life option. Unfortunately, the Commonwealth Criminal Code has not made an amendment to that or a change and so, yeah, we still are unable to provide patients with telehealth consults, which is, you know, is is really tricky. Really tricky for people in regional areas where there just isn't access to specialists who have done the training. And really tricky for even people in metropolitan Melbourne who are terminally ill and actually getting out of the house is is a real challenge and for some is is impossible.

Robyn:

And that's that was the thing because they could have taken him via ambulance, but to move him was so painful that he would have been drugged, which meant then that he didn't couldn't make logical decisions. (L: Yeah) and so therefore it just didn't happen. And and he was diagnosed uh July, August, and then he actually died in January, so it happened anyway, but uh I think you know, one of the things that that people don't realise that it's obviously if you've got something like motor neurone disease, you can't self-administer. No, and like by he by that stage he could move one hand, but barely, and certainly not to get something to his mouth.

Laurie:

Yeah.

Robyn:

So and so then the doctor, his own local doctor, uh, who'd seen him for 20 years or so, he had to do that training. And that's and he said to me, "I'm I'm trying to get it done, but it's pretty big. It's not just something that you can do overnight and send it in." And so I don't know whether he ended up finishing it or not because he was about halfway through when Tony died, but he was doing his best to, as a busy GP, to fit that in on top of things and everything. So it's

Laurie:

And it puts a lot of pressure sometimes on on the usual GP to complete the training. To I've got to do this and and also grappling with the 'okay, well, doing I might believe in VAD and and I really want to do the training. Wow, the first case I'm going to do is actually then going to be practitioner administration'. And so there's a lot of things to consider that for the doctor trying to rush through and get this done and knowing that the that their patient on the other end of this is deteriorating, it's a it's it's very tricky.

Robyn:

It is, and it's and he's also been this guy's doctor for over 20 years as well, so he knows him well. It's a tough area for doctors to to try and make that decision as to whether they they do it or not. And I've had a few conversations with my own doctor about that sort of stuff uh because of my interest in it, and she has voiced the same sort of things, you know. She said, "There's a part of me that wants to do it, and there's a part of me that goes back to the Hippocratic oath of preserve life at all times", sort of thing, you know. So she said, I 'I just', I don't know whether she's ever done it or not. I haven't asked, but it's a whole complex area, isn't it? So I was talking just before we started, and I said, I had so many questions, I don't know whether we're gonna get through them all or not because it's such a big topic to talk about. But I will come back to you and ask you, I ask everyone, what is their why? Why do you do what you do?

Laurie:

Oh, for the, I do it for the patients. I don't see how I couldn't. I don't see how if someone has a terminal illness, has a shocking diagnosis, and has a short prognosis, why they shouldn't be able to choose how that ends for them. And I have had the privilege at being with many patients at the end of their life, and what it brings to them, what it gives them in terms of for some people, it enables them to bring their family from overseas, to make sure that all the people they want there in the room are there, to ensure that they've said their goodbyes, or for everyone, there's there's something different, but I just couldn't imagine not wanting to be a part of that, to be honest. It's a privilege, a little bit like I think midwives would say being at someone's birth is a privilege. And yeah, I I just I think we have it we have a choice in some things in life, and I don't understand how for someone who wants to make that choice, why why we could stand in the way. And for those who don't want to make the choice, that's fine too.

Robyn:

Yes, that's right. That's everybody finding their own, (L: yeah), their own thing, isn't it? And I think that's what the main thing is, is choice.

Laurie:

Yeah.

Robyn:

Is is choice to know and there've certainly been a couple of instances in my life where I have faced the the possibility of not coming through the other side. And to be able to have a choice about that, I think would be very empowering to the person, even if they don't take that choice.

Laurie:

Exactly. And I always think to myself, oh, if I was in that person's position, I would totally do this. And then I think, but would you take it? I don't know. Like who who knows until you are in that spot. But I think that as healthcare professionals, we all talk about person-centered care and ensuring that the person is at the centre of all the decisions that are being made about their care and I just see this as another, as an extension of that. We offer people could have chemo, or you could have radiotherapy, or you could have nothing. And I just I just think that this is just an option, and and why why shouldn't we allow people to have it and to choose it

Robyn:

Absolutely. And I think too that we don't have, like we don't allow, and I know this is this sounds quite trite, I guess, in a way, but if you were to have a dog that was terminally ill, and you said to the vet, I want you to keep him here so I can come and pet him once a day and sit with him for an hour, I don't think you'd find a vet anywhere who would do that. And, you know, because everybody would be going, oh, that's really cruel. But when it comes to human beings, it seems to be a completely different story. I mean, so many families with broken hearts have their dog, cat, mouse, whatever it is, put to sleep because they don't want it to suffer. And yet we allow that suffering to happen to another human being. And I I think we'll come to a time where, and I I know that it's not possible at this point in time, but where people who are diagnosed with dementia, that's rapid onset dementia that's going to be .....to watch someone..... I have someone at the moment who who has dementia, and to know that she would be absolutely mortified at her behaviour, at how she presents herself, and all that sort of stuff, she would be absolutely horrified at how she's progressed in this disease. And you we just have to stand by and watch it. And I know because we've had many conversations, I've known her all my life, and so you know, we've had many conversations about different people who were in that situation, friends of hers, and all that sort of stuff. And she would just say to me, "Oh, just shoot me. Please don't let me ever get like that." And now, you know, I'm just going to see her this afternoon. Now I I sit there and I go, I just don't, it's cruel, it's absolutely cruel. But it's at what point do you go, "yes"? And what point does that happen?

Laurie:

Yeah, and I guess that's the whole ethical challenge of it. And who, if the person has lost capacity to make their decisions, then who is happy to be the person that goes, "Well, I'll be the decision maker decides that today's the day." (R: Yeah), because yeah, and so and we we get lots of well, we get quite a few inquiries for people calling, either on behalf of themselves saying, "look, I'm doing an advanced care directive", and and just like what you've said, "if I were to get dementia, I would want this. Can I do that?" And we have to let them know that actually. No, as it stands, it it wouldn't be, it's you it just wouldn't be meet the eligibility criteria.

Robyn:

It's and that's the thing, isn't it? There's no kind of like, at what point do you..... I know there will come a time when I'm going to walk in and she's not going to know me. I know that, I've been trying to prepare myself for it. I can't. Uh I'm doing really lousy at that, but a couple of times she's forgotten her son, and a couple of times she's forgotten her husband, and so has looked at me and said, "Who's the man in the photo there?" And meanwhile, I'm bawling my eyes out. And then she picked up that there was something wrong, and she started crying too, and we talked about it, but I know that time is going to come. She's she still recognises her son, but when she's trying to think of his name to tell me, I'll have to prompt her to say what it is, and and then she'll go, that's right, and she'll say to me, "I just can't remember anything", and it's so heartbreaking to to see somebody who was such a vibrant person go down that path. But the it's such a grey area that you just don't know. I mean, she was diagnosed three years ago, she could live for another 10 years, (L: yeah). Like her body, she had three falls in one day and was fine the next day, you know. Like her body is as strong as an ox, so who knows, you know, how long it's gonna go on for, but 92, you you you look at her quality of life, and I think that's a lot of this comes down to quality of life and living in pain. Living in pain is very difficult.

Laurie:

Yeah, and we do get inquiries pretty uh frequently from people, not necessarily with dementia, but with chronic pain or a long-term chronic illness that have really poor quality of life, and they just as it stands, they don't sit inside that eligibility criteria. And it can be pretty awful to explain to people that their suffering, I guess, is is not not enough to qualify for this, or you know, that that quality of life on their own unfortunately is not one of the eligibility criteria. And that that can be pretty heartbreaking for people to hear that, well, you know, someone else, someone else's illness is is deemed more appropriate for this and they can um end their suffering, but I but I can't. And so that that is a bit of a challenge, you know, it's part of our role is to sort of counsel a little bit and and speak with patients who who might not fit inside that eligibility criteria.

Robyn:

So when someone does fit, say that you know they've they've been told their prognosis isn't good and and they're going to go into palliative care type in the journey, what does that initial conversation look like when a person first expresses their interest in VAD? And and what are the steps that you take to ensure they fully understand the process?

Laurie:

Yeah, so like you referred to earlier about the Commonwealth Criminal Code, we can't really discuss specifics about VAD over the phone because that would be in a breach of the Commonwealth Criminal Code.

Robyn:

Wow ... So we need to get that changed, right?

Laurie:

So we um we can speak generally about the process, but of course, when someone's calling you to ask about how they can start a process perhaps towards ending their life, that really is a conversation that is best had in person, (R: right) You know, regardless of legal frameworks and things. And so we do a lot of home visits, or if they are patients of Peter Mac, or we might meet them when they come into the hospital. And thankfully, also a lot of the larger hospitals in Melbourne have dedicated VAD coordinators. So either if it's not us, it might be one of them, and we'll go and meet with the person wherever they are, with whoever they want there. So it's usually great for people to have a family member or a friend with them so that everyone can hear the information at the same time, everyone can ask questions, but some people want everyone to be involved, and some people don't want anyone to be involved.

Laurie:

So we're very we are not really one size fits all. We're just we go at the pace that the person wants to go to. But um, ordinarily we would probably arrange with them a visit to their home and then talk them through what the process involves with regard to practicality stuff. The appointments, and we would find out at that at that home visit. It's a really great way to have a good look at is the person actually going to be able to travel to appointments? Are they bedbound? What are the family dynamics? Are they going to be well supported in this process or you know, do they have people around them? We talk a lot about we want to ensure are they linked in with community palliative care? It's a really, it's not just a VAD visit. It's a end of what do you want your end of life to look like? And for some people who might be really close to the end of their life, that conversation might end with us saying, "look, we'll see what we can do with regards to arranging that assessment. But I think what the most important thing here is your comfort care and and and good palliative care". For some people, once we explain what VAD really is and and what the process looks like, sometimes they go, "Oh, that seems.... don't worry about it. Oh, it's not quite what I wanted." Or some people just purely want us there to give that information and to sit with that, and we might never hear from them again. Because that's all it is, is we're providing people with the information so then they can make a choice. But we'll do that visit, and then I always say at the end of the visit, "I won't do anything until you tell me to". So very differently to other nurse coordinators that people might have along their journey. We don't call and check in on people unless they specifically say, you know, sometimes at the end of a visit, they'll say, "Laurie, get the show on the road. You are you find some doctors for me, let's get this happening". And and of course, then that's what I will do as as instructed, or otherwise I will say, "here's my number, you call me whenever you like, if you like. Otherwise, it was lovely to meet you", and and I might never hear from them again. And so we very much work at the pace of what a what a person wants.

Robyn:

But what happens when you have like, you know, as a funeral celebrant, often families within families they have very differing opinions about what should happen in a funeral. And I would imagine that that would be a similar thing in what you're doing. How do you manage that? How do you....

Laurie:

Yeah, it can be a little bit tricky at times. I have been pretty fortunate. Like I can't think right off the top of my head of a, you know, a terrible kind of scenario with family dynamics, but I know that we have had them. And I just very much try and keep everything towards the person. So it's not that we won't perhaps acknowledge that there might be a son or daughter sitting there looking very uncomfortable, and sometimes we'll call that out. And I might say, "I can tell this is really difficult conversation" before, like "this is a big deal, yeah?". And often what we find is when there is a family member or someone close to the person who's really finding it all very difficult, it's not necessarily the VAD that they're finding very difficult once we unpack it a little bit. It's that because we're talking about VAD, we're talking about dying. And so what they thought might have been, oh yeah, mum's not doing well, and at some point we're going to have to think about when she might die. Maybe in the living room talking about making appointments, permits, what might happen if you took the medication. And so often it really is that VAD's not the problem. (R: Yes). Mum dying is actually what I'm really distressed about. (R: Yes. Yeah). And so, yeah, we keep everything towards the person, but of course, if there's someone in the room that you can tell is really not on board, you know, calling it out a little bit, "this is really tricky, like this is a really terrible time for you guys". And then seeing what comes back from that. (R: Yeah), and all always reassuring people as well, that this is a process that, as you said earlier, it does take a bit of time. So at that first visit when we meet people, we go, it's like nothing's going to happen this week. We can work through this over, you know, it will take about four weeks. Okay. So and even then, they may never choose to take the medication. And so we've got that time to sort of work with people and provide them with a bit of support if that's if that's what's required around the sort of the VAD process. But a lot of the time it's actually just the fact that hey, now we're talking about something that's that's here.

Robyn:

Yeah. And and we don't do death well in Australia overall.

Laurie:

No, and when you started off saying about your friend, well, I think you said something to me earlier about being actually being told they were dying. (R: Yes). And lots of people don't get told that they're dying. Yeah. Clinicians feel really uncomfortable telling people that they're dying. And it's the same sort of with prognosis when when we say to patients, has the doctor talked to you about what they think your likely life expectancy might be? "Oh no, no, they always say how long's the piece of string" or you know, things like you know, things like that. And um, yeah, it it's it's yeah, it's interesting to me how much clinicians feel really uncomfortable just actually saying "I'm really sorry, but you are you're dying". (R: Yes). But how actually people really value it. Sometimes when people meet with us, because I actually say dying or died, I rarely say passed away. Um and people just sometimes go, "oh thank goodness, we can actually just talk about like real practical", you know, not everyone, some people are still really confronted and that's fine, but a lot of people have just been waiting for someone to that they can feel safe to talk to about, "hey, the treatment's not working. I want to talk to someone about dying" because often family members don't want to talk about it yet because maybe there's some still some hope. And sometimes the doctors don't want to talk about it yet because maybe they've got another treatment or a clinical trial, and the person's exhausted and goes, "just let me talk about what might happen when it's all over."

Robyn:

It's really interesting people talking about dying. So I run a company called Last Farewell, and I actually help people put all their stuff to make sure that they've got a will, that make sure they've got an advanced care directive, make sure that they've got a power of attorney, choosing a funeral director, talking about how their funeral, what their funeral actually looks like, and all that sort of stuff. And there's there's kind of almost like two different uh aspects. So I'll talk to children who who will say, uh, "Mum and Dad just won't talk about it because they just say, we'll be gone, it's your problem, don't worry about it". Or I talk to the parents who say, I keep broaching it with my children, but they keep saying, "I don't want to think about you dying."

Laurie:

Yeah.

Robyn:

And so you've got these two different camps of people who who both really in some ways want the same thing, but don't want the same thing, you know. And I always say to them, "look, it's like if you were getting married in a week. Would you want someone to choose where you got married, who did the ceremony, who spoke at it, you know, what you had afterwards, even to the clothes that you'd wear and the flowers that you'd have in a week. Would you want that?" No. But that's the pressure that you're putting on the person that you love the most, who is the most upset.

Laurie:

Yeah.

Robyn:

You're putting that pressure on them to think about what they think you might like. Whereas if you've got it all written down, they can just go, this is what he wanted, or this is what she wanted.

Laurie:

Yeah.

Robyn:

But it's it's having that conversation because we still don't know. And it's interesting because when people have someone die, they go, Oh gosh, I'm never gonna speak about that way to somebody who's just had their person die again because now I know how it feels. But it's a bit like a car accident. You witness a car accident for the next five kms, you're gonna be really careful driving, and then after that you go back to normal.

Laurie:

Yeah, you forget.

Robyn:

So five years later, and that person is kind of like their grief has changed, they don't act the same with someone else again. And you kind of like go, but you've been there and done that. So I just wish we had more education, which was one of the reasons that I wrote that book, because I wanted people to teach their children about death before someone they loved died. (L: Yeah). Because they they just wait until someone dies, and then this poor child is so overcome with emotion, and they've got to learn about the practicalities of having a funeral, having a viewing, doing all that sort of stuff. So I just wish that we did we did death better in Australia. I looked at Tony's wife and I looked at my best friend. So my best friend's husband died three months later, and I watched my best friend who is Australian go through the grief process, and I watched Tony's wife, who's Vietnamese, who had very strong traditions to follow. (L: Yeah). And how much better that grief journey was. And it was through what I learned from helping both of those after their spouses died that I thought if people did a lot more preparation, it would make it so much easier on the person who left who's left behind and starting Last Farewell. But it's a new area, and people are like really wary. Like, I don't I don't know whether I really want to do this or not. So I go, that's okay, just think about it and at least have the conversation. If you don't want to talk to me, at least have the conversation with the person that you love to tell them at least whether you want to be buried or cremated, right? That's that's a simple thing.

Laurie:

Bare minimum

Robyn:

But they don't. A lot of people, when I ask people, "okay, so does your wife want to be buried or cremated?" They go, "I don't know. We've never had that conversation". And I'm like, "How long have you been married?" " Oh, 45 years! But it's yeah, it it goes off. So let's let's get back on track here because I've just taken us off track a little bit. So what in your experience, what are the most common fears or concerns that patients express?

Laurie:

It's usually that loss, loss of control, loss of dignity. It's rarely about concern about physical symptoms that will be unable to be managed. The vast majority of people just say to us that they don't want to lose the ability to make their own choices and they don't want to lose the ability to care for themselves. So for some people that can be "I do not want.... if I can't toil et myself", (R: yes). Like it's it's (R: That's where my mind went). Yeah, yeah. And everyone's got their own point, and sometimes people get to that point that they've said is their trigger, and then they're still not ready to take it. So that's that's that's fine. But it we've we find that rarely when people are saying 'this is what I want', rarely is it that they're concerned that their pain won't be managed, or you know, sometimes it is, and and of course that we do our very best, and and the palliative care services do as well, to reassure people that they will have their symptoms very well managed, which is not to try and talk them out of it, but just to reassure them that this is not a either/ or. But yeah, most of the time it's just "I want to have, I want to have this as an option. I want it as an option". Yeah. "I'm worried that I might, I'm worried that I'm going to deteriorate and be sometimes people say just be a body in a bed". (R: Right) and "I'm scared that that might linger on for days and days". Sometimes people refer to an experience they've had. Like it's really common for people to say, "when my mum died, this happened and I don't want that to happen to me". And it might be a historical thing that has stayed with them about they, I don't know,

Robyn:

They saw how difficult it was for the family. (L: Yeah), and they want to alleviate that.

Laurie:

Yeah, and and people do often say, I don't want to be a burden, and of course, then their family members say "just stop that. Don't be ridiculous because you're absolutely not, um, and you won't be when you're dying, we will care for you and and do whatever you need". But yeah, most of the time people just are saying they the reason behind it is they want to have that choice, they want to have that option. Yeah, and for a lot of people, as I said, they might never use it, and they just want to know that it was there.

Robyn:

Have you ever had an instance where you felt like somebody was being coerced or influenced to go down that track?

Laurie:

I actually haven't. I've had the opposite, where it's it's more common for family members in our experience to be saying, "Oh, do you really have to do this?" Do you know? Yeah, so um I haven't had an experience where I've felt that someone was being coerced. And I know amongst our team that we that that's not something that we've really experienced ever, or if you know, in the last five years that I've been doing it, it might have been extremely rare, but but we've seen the other side. Yeah.

Robyn:

That's really that's really interesting. And you know, from the point of view of the family, you totally get their side coming from we love you and we want to see you through this and we'll do everything, but it's a I'm very big, even after someone's died, I'm very big on dignity in death. (L: Yeah). That's my my thing. You know, I want the funeral director, I work with funeral directors who I know and trust will absolutely let that person, even if it's a direct cremation, that person will go. I want to go with my my hair done and my nails polished, and because that's just me, right? And so I try to work with people who will reflect that for everybody. Dignity in death, I think, is one of the most important things that we can have. And if VAD is the right thing for somebody to retain that dignity, because I'm the yeah, I'm definitely the person who says I don't want anyone to toilet me. Thanks very much. So uh yeah. Do you have a percentage of people who actually do use the medication compared to not or not?

Laurie:

So yeah, so it's the the VAD review board release all of the data every year. So publicly, that's available, and it's been consistently about 35% of everyone who has the medications available to them who have not taken.

Robyn:

I'll probably put that back in. Yeah, 65% of people do go ahead with it, go through with it. That's that's that's interesting. I think that's increased because I don't think it was that high before.

Laurie:

In uh, so no, it's always been about 30, 35 percent. (R: Oh, has it? Okay), yeah, yeah, yeah. So yeah, and so sometimes that can be uh the majority of time that's just because people just went, "I had it there, I was very comfortable, never used it". Sometimes it's there, and we do sort of explain to people sometimes people have it and they've got the opportunity, I guess. So they're awake and alert, they're well enough to take it, but they're not ready. And maybe they were never going to be ready, you know. (R: Yes), but that window can sometimes close really quickly of having the ability to take it or deteriorating really rapidly, that now they actually can't communicate to their family, I'd like you to get the kit, or you know, to the doctor, I would like, you know, self-administration. And what we find is that when that window does close, often it's the families that can be quite distressed by that, you know, because now mum or or dad is unconscious. (R: Yes). They're going, this is what they didn't want to happen. This is the whole reason they that they requested VAD. And so that can be a little bit of a challenge to just sort of explain that they had a window of time where taking VAD, where they had the opportunity to take it and they weren't ready. And now they have are slipping away. But they are very peaceful, they knew that their wishes were honoured, that they asked for VAD, that they got their assessments, they were heard, and they had that option. And what they wanted was a comfortable death. And so now VAD's off the table, but palliative care will do their very best to ensure that the that the comfortable death is what they is what they receive.

Robyn:

Yeah. So so, in saying that, how many like uh can you give me kind of like a percentage of people who want someone like you to be there? Is it a small percentage or is it

Laurie:

Oh, it's really hard to say, and the reason that it's a bit tricky to say is because, as I said earlier, there are sort of hospital-based coordinators as well. So I can't sort of speak on how often they might attend at a self-administration or or whatever. It's variable. I couldn't give you a percent, to be honest. It's not something I do every day, or it's not something I do every week, but between our service, we we might attend a death or maybe a couple of times a month. But yeah, I'm sorry, it's it's one of those things that pops up and then it doesn't. It's a little bit like when when I used to be a ward nurse. Sometimes you might get three MET calls in one shift, and then you wouldn't, or you'd go through a week of everyone was being really unwell and requiring ICU, and then you might not have a MET call for a month. (R: Yes). Or yeah, so uh it's it's it's variable. And what we try to do a lot is upskill, upskill the usual care team. So the more we give education to nursing staff, to aged care facilities, the more they might be able to support that patient when they self-administer, which takes away the whole need for the VAD service and just normalizes VAD as an appropriate end-of-life option. So it may be that sometimes people take the medication in hospital and we might know about it and we'll say, of course, if you need anything, but the ward staff will say, we've got it, we can manage it, it's fine. A lot of the palliative care services are not quite ready out in the communities to necessarily have their staff support the person as they take it at home, but they're very happy to provide all the care before and all the usual care after. (R: Right). So it's just a personal choice. I'm sorry, I can't give you a percentage.

Robyn:

No, it just that was just curiosity on my part. We've come a long way, but what changes would you still like to see happen?

Laurie:

Well, it's a very um timely question because um there were 13 recommendations put to Victorian Parliament just earlier this week, which were in the Lower House approved or voted for. And so for some of them, removal of the gag clause, I guess, is really I think is paramount. So right now in Victoria, it's illegal for health practitioners to raise or suggest VAD to their patients. And so for a lot of people, that's the barrier. You don't know what you don't know unless someone's really well educated or reads the news or someone's told them, they might not know that's even VAD even exists. So removing that, like some of the other states don't have that, and they've shown that it's very safe. It just allows a health practitioner to suggest VAD within an appropriate end-of-life conversation. It doesn't mean that every doctor's going to be saying you want VAD. And it's only it obviously relies on the doctor feeling comfortable enough to have that conversation, but at least it allows that option for when doctors are saying to someone, look, our active treatment is no longer working. What we can do is offer palliative care, VAD, maybe something you might want to look at, etc. So that would be um, I think one of the number ones. There's an extra step in the pathway for patients currently working through VAD who have a neurodegenerative condition, and it requires an extra letter from another neurologist, and they are hoping to remove that extra step, and that would be really helpful because that can sometimes make the time it takes to get through the process even longer. These are just really practical things, but currently it's very strict on a person must have Australian citizenship or permanent residency to be able to access VAD, and we've actually found that there's quite a few people who legitimately live here that don't fit in that category. So people from New Zealand, for example, who don't have a permanent residency visa, or people from the UK who came as £10 POMs on the on the boat. And so they have um recommended getting in line with what New South Wales Act has, which is that a person must be an Australian citizen, permanent resident, or can demonstrate they've lived here for the last three years consistently. So things like that will that will allow people who they're legitimately living here, but allow them access. So they're probably some of the ones I've I know that there is a also going to be potentially the option of patients to choose their route of administration. Currently in Victoria, the default is that it's a self-administered medication with practitioner administration available if a person can't. However, some of the states have the option for a person to choose, and um, and that is one of the recommendations as well. Which I have in a patient-centered approach, that's really great because it gives more options. In a in a practical workforce approach, I I worry a little bit, especially in the in the start, about having available practitioners to be able to administer the medications. Um, because not all VAD practitioners at the moment are happy to are comfortable to actually administer the medication.

Robyn:

So, what about you now? I think I think just going back to that, uh, I think I signed a petition in regard to that, and I was like, absolutely, all of those things were just so important. So I and I know that petition, I can't remember when it was, but it wasn't that long ago. So obviously that was about that. Uh how about you now? Uh, how do you personally feel about VAD if you were faced with a terminal diagnosis?

Laurie:

I mean, I think I would I'd want to go through the process. I'd want to be assessed, I'd want to have the option. Would I take it?

Robyn:

Who knows?

Laurie:

Nobody knows, right? But I would I would absolutely uh yeah, I would I would want the option for sure.

Robyn:

So, what is the one thing you would wish more people understood about the choice to pursue VAD?

Laurie:

I think what I wish people understood was that that's all it is. It's a choice, that it's voluntary.

Robyn:

Yes.

Laurie:

Um, that for people wanting to access it, they're not choosing to die. They're dying and they're just choosing to have a bit of agency about perhaps the matter or the time or the day in which that occurs. Yeah. I think that it's voluntary and it's it's just allowing people to have a choice.

Robyn:

How do you stay emotionally resilient and maintain a healthy work life balance in this field?

Laurie:

Well, we have a really great team. So we have a really great team. We're small, but we um support each other, you know, really well. We have lots of informal debriefs, we have formal clinical supervision with a clinical psychologist once a month. Yes. Which is great. And really, I I don't find the work any more, I guess, emotionally draining than perhaps in my cancer nursing days, for example, when I did look after people who were dying. Obviously, it's it's it's hard work, but it's it's rewarding work. I had a family member say to me only this week after after their mum died, and she said, "the last two and a half years since mum's been diagnosed have been awful, but today was the best part of it".

Robyn:

Oh, isn't that great?

Laurie:

And I was like, you know, it's it's hard work for me, but it's it's rewarding in a sense that they felt that the gift of her being able to choose how she went out was meant so much to them that you know it's it's a it's a rewarding job. As I say it's not hard, and we have lots of debriefs and we have a little bit of a dark sense of humour at times because if you don't laugh, you might cry.

Robyn:

Absolutely, and that's true of all of us who work in the death, dying, and funeral industries. So, and that's a perfect way to go to our next segue.

Robyn:

To wrap up our sessions, as a big fan of the actors studio, I'm going to take a leaf from their book and ask a series of questions to each of our guests. So, what is your favourite word and why?

Laurie:

Oh my favourite word. Oh God. I'm failing miserably. I don't know what my favourite word is. Outrageous. Maybe outrageous.

Robyn:

Does that reflect who you are?

Laurie:

I don't know if I'm that outrageous, but I think I'm sometimes probably a bit of a drama queen, so I might just say, Oh, that is outrageous behaviour. And probably stops me from saying that someone's been completely ridiculous. I might just say that was outrageous behaviour.

Robyn:

What is the thing you're most grateful for in your life?

Laurie:

Oh my family and my friends and my health.

Robyn:

Health is a really big thing, isn't it? Excellent. If you could work in any other role rather than what you do now, what would it be?

Laurie:

Oh, well, I would love to be like this is like a you know, pie in the sky. Yeah. I'd love to be paid to just like travel and maybe write about what amazing resorts are like around the world. I think that's all.

Robyn:

A travel writer that's an occupation of travel writer!

Laurie:

I'm not a writer at all, but I enjoy traveling.

Robyn:

That would help, but you know, this is this is fantasy, it's not reality.

Robyn:

What sound do you love the most?

Laurie:

Oh, do you know what? Sometimes the sound of silence.

Robyn:

Yes, that is not an unusual answer.

Laurie:

I talk all day at work, which I'm quite happy to talk, actually. I'm a I'm a talker, but um so you know, I we constantly are just talking with people all day, and it is emotionally, you know, it's it's great, but it can be emotionally draining. And then I come home to three children. So um, so you know, at the end of the the night, a little bit of silence is is wonderful.

Robyn:

If you could have dinner with one person, living or dead, who would it be?

Laurie:

I don't know why I'm struggling so much with these questions. Who would it be? One person.

Robyn:

It could be a famous person, could be somebody from history, it could be gosh.

Laurie:

I did not prepare for these questions, did I? No, you weren't meant to prepare. Oh gosh. You're gonna have to cut all of this thinking time out.

Robyn:

That's all right, that's fine.

Laurie:

I was gone a complete blank. Okay, let me rephrase it to another way. Yeah, I know. Who who is the person that you would admire the most? (L: I'm fully going blank), that's right, we'll skip it. What do you think is the most important lesson you've learned in your life so far? To not be judgmental, to just be kind and not judge other people's circumstances, situations, you never know what someone else is going through.

Robyn:

That's right. And directly from the actor's studio, if there is a heaven, what would you want God to say to you when you're met at the pearly gates?

Laurie:

Or um, what would I want him to say? "Thank God you're here". no " Here's I've had the champagne chilling for you".

Robyn:

Excellent.

Robyn:

Thank you so much for your time, Laurie, as we wrap up this podcast. Thank you for clearly outlining the complexities of VAD. Your insight has been invaluable. It has certainly given me a greater understanding. I personally appreciate the courage that it takes for both the individual choosing VAD and the professionals like yourself who support them. Thank you so much for your time.

Laurie:

Thanks so much. Thank you. It's been a great chat.

Robyn:

If you have a question you'd like to ask or any other topic about death that you'd like to learn about, please drop an email to ask@ladyofdeath.com.au and we will look at possibly doing a podcast of the questions that you've always wanted to know but never knew where to go to ask, or were game enough for that matter.

Robyn:

This is Robyn O'Connell, the Lady of Death, whose philosophy is 'for everyone to embrace life fully, yet be prepared for its natural end, ensuring that when that time comes, it's not just an ending, but a true and authentic representation of the unique life you lived'.

Robyn:

Thanks, talk to you next time.