The inevitable: death, dying and mortality 

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Welcome to Upfront About Breast Cancer. What You Don't Know Until You Do – Unlimited with Dr. Charlotte Tottman. 

Kellie [00:00:56] Welcome back to this final episode in the second series of What You Don't Know Until You Do – Unlimited with clinical psychologist Dr. Charlotte Tottman. I'm Kelly Curtain and this episode is a big one. Death, dying and mortality. Charlotte It's a conversation many fear to even think about having.  

Charlotte [00:01:18] Absolutely. And we see that a lot and I wouldn't be surprised if people are, you know, got their finger hovering across the the stop button or the pause button. But stick with us. We've got you.  

Kellie [00:01:29] So we all know that dying is inevitable, but that doesn't make it any easier. And in a cancer context, the sad reality is that more than 3000 Australian women and approximately 34 men lose their lives to breast cancer every year. So today we're going to explore why we find it confronting and what happens when people avoid talking or preparing for death and discuss some strategies that might help these important conversations get started. This episode, like the others in the Upfront series, is unscripted, and the discussion does not replace medical advice nor represent the full spectrum of experience or clinical option. Please, we ask you to pay particular attention to self-care when listening to this topic of death and dying as the content may be triggering or upsetting for some. Charlotte, what is it about death and dying that we find so uncomfortable? 

Charlotte [00:02:28] I think it's multi-factorial, which means there's a few bits to it. I mean, it's pretty big. It's the very pointy end of things. There's no coming back from it. So it's, you know, it's the end. Part of it's the fear of not being here, so that anticipatory grief around what am I going to miss and how my loved ones are going to go on without me. It's perhaps worry about the process of dying because we aren't often educated or socialised around that. And it's about all the uncertainty that surrounds the whole death and dying experience. So lots of stuff in there. I guess I want to get out on the table to begin with that I am actually comfortable in this space and I'm comfortable in an uncomfortable space, probably because of repetition. So I talk about death and dying a lot. I do because of the work that I do specialising in cancer. I do by necessity. I have to work with patients and their family members who are confronting the end of life and getting ready for that. And so a lot of what we do discuss is about helping them confront some of this stuff that we in Western culture don't do very well. So I think I'm comfortable because of repetition, and I'm also comfortable because it's familiar. We've done death in our family. I'm 58, but when my parents died, I was in my twenties and both of them died from cancer. Mum ovarian and Dad bowel, both of them after an extended period with metastatic disease. And so I know what death looks like. And I guess therefore when I say I'm not scared of it, I'm not scared of talking about it, I'm not scared of going there. And that's what we're going to do today.  

Kellie [00:04:07] You must have also had clients die. 

Charlotte [00:04:11] Absolutely. I have had lots of clients die. Yeah, that brings up a lump of emotion. And I do go to funerals, not to all clients who pass away. Some where I'm invited. Some where it's appropriate. And I warn my clients because I have a very privileged position in their life, often, you know, towards the end of life with them. And that has great significance for me.  

Kellie [00:04:34] Your observation that you have a lot of practice, that's possibly one of the obstacles that many face because you only die once. 

Charlotte [00:04:42] Correct. You only die once, and you know your loved ones only die. So exactly, we don't have a lot of practice in this space and anything that is new and unfamiliar. We've said before that anxiety rises with the unknown, the unfamiliar and the uncertain and death and dying has got all of those in spades. So, it absolutely provokes anxiety. And then we have that very common response, which is to avoid. And that would be okay if it wasn't inevitable. And that's the thing about this episode, is that, I mean, sure, we're talking about it in the cancer context, but really truthfully, it applies to all of us. At some point, we're all going to have to die. So regardless of whether it's after a cancer experience or something else, whether it's sudden or after a prolonged health event, either way, we're all going to have to confront it. 

Kellie [00:05:29] And yet, knowing that it's inevitable, it's remarkable how many people still refuse to go there.  

Charlotte [00:05:36] It's quite interesting, like sort of as a psychological phenomenon, as an observer, if you like. I do find it really fascinating and one of the things that I have observed a lot, and it used to surprise me, and it doesn't anymore, is I've talked about the small blue couch, or have I? 

Kellie [00:05:51] No, you haven't yet. Tell me about the small blue couch. 

Charlotte [00:05:54] In my consulting room in Adelaide. I have a small blue couch. And that's where my clients sit. And if they come in, you know, with a loved one, that's where they sit together. And over the years, I have many times asked my clients and their loved ones sitting on the small blue couch. So if there's obvious resistance about introducing the topic of death or confronting death and dying mortality, if I'm aware of that, I get it out on the table and I say to them something like, So do you think that if we if we do start talking about death and dying, if we do confront mortality, do you think that it might increase the chances that it happens or that it brings forward the time in which it might happen? And I used to expect the answer to that to be no, except that it isn't almost always and I'm talking people, professors of medicine, very scientifically minded people you would think probably don't have superstitions, perhaps, but they will sit and pause and think and almost always say, ‘Well, yes, I do’. And I think that's fascinating. And I think it reflects probably a range of things. Sometimes it is exactly superstition. So that sense of like, you know, almost daring the universe. 

Kellie [00:07:09] Of if you verbalise it, it will be.  

Charlotte [00:07:10] Correct. I think sometimes, particularly if it is if you're the loved one, it can feel like signalling to your partner or your family member that I'm throwing in the towel, that I'm giving up, that I'm there when I'm not sure, perhaps you are. And so, I'm not prepared to get into that space. You know, if you haven't signalled that you are, when you're faced with that sort of belief, confronting that and unpacking that can be incredibly challenging.  

Kellie [00:07:40] So when we go back to avoidance, when you avoid, you fail to plan. 

Charlotte [00:07:46] Yeah, so the avoidance is a behavioural response to the, to the emotional feeling of anxiety around death and dying. And I know this sounds like kind of a weird comparison, but I often talk about getting ready for death a bit like a pregnancy. So, when you get pregnant, I mean, sure, you have nine months to build a baby and to buy the pram and paint the nursery, but you also have nine months to get your head in the game and for your family members to kind of get emotionally and practically ready for that. So, you've kind of got that time and it's, I guess, provided by the duration of a pregnancy. Now, with death and dying, you have to choose to kind of like take that time and use that time. And what I see is that the earlier that people confront the avoidance tendency and start the preparation, the better it is for them. If you wait for it to feel comfortable, you'll never do it. So, it's not about going, I'll kick it down the road, which is what a lot of people do. I'll kick it down the road to some future point where I feel like it's going to not be quite so distressing or make me feel quite so uncomfortable. That that day won't come, it won't be comfortable. So doing it earlier isn't about a comfort issue. It's about the fact that you and your loved one, regardless of whether you are the patient or that or the partner or the carer, you will all do better if you are doing this a bit further away from the end of life. Because when you get there, things can be messy and sad and trying to then sort out the practical stuff around death and dying is a whole lot of additional stress that nobody needs.  

Kellie [00:09:27] So when you're saying if you have the conversation earlier. With a cancer diagnosis or a terminal cancer diagnosis, there usually are weeks, more likely months, that it's going to happen. And hopefully for the most part or for a good amount of time, you can feel relatively well.  

Charlotte [00:09:54] Yeah, you can feel well, and you can look well.  

Kellie [00:09:55] Is it less confronting and easier to talk about when you are at that stage. Like you are saying before, there's that downhill slide when it's really on your doorstep.  

Charlotte [00:10:07] Yeah. And so, there's I think there's two sides of the coin there. If you're looking and feeling relatively well, there can be a real tendency to go, I don't want to spend this good time doing those scary, uncomfortable things. And, you know, maybe I'm feeling a bit optimistic that this could kind of experience might last longer than perhaps we might have thought. So, I'll kick it down the road. And if the people around you are taking information in through their eyes, as we know humans do, then they may to kind of go, ‘Oh, well, it's no rush, don't have to kind of like get ready with all that death and dying stuff. Now we'll just do that later’. The other side of the coin is that when you are in that space and you are looking and feeling well, you will be able to cognitively, emotionally and practically attend to the business of dying much better, than when you are heavily medicated or feeling the impact of advanced disease further down the track. You know, even things like making an appointment with your solicitor and going to see them or having a meeting with your family. Trying to do that when you are on heavy opiate medication and really feeling really very unwell, that's not going to be an easy task. None of this is easy or enjoyable anyway, but it's so much harder to do it when you are actually less well. 

Kellie [00:11:25] And wills and legal things are one side of it. We're very passionate and really want to sort of lift the lid on that emotional will too, about being able to express your wishes and have those important conversations. No one can take hope from you. There's nothing wrong with thinking hey I think I might, you know, defy the medics here... 

Charlotte [00:11:55] Live longer.  

Kellie [00:11:56] And let's hope you do. That you do go that extra mile. Five years. Ten years. But it really is about getting ready, getting active. And we are in a breast cancer context, but that really is for everybody.  

Charlotte [00:12:11] Yeah, for sure. A client of mine has a palliative care nurse called Jackie and I don't know Jackie personally, but I am crediting her with her excellent strategy that I've now pinched and use quite a lot. And that is Jackie's idea of having two lines when you are dealing with a confronting mortality. And her two lines are: one line is hope and the other line is getting ready. And it's like thinking about these two lines as parallel lines, and you want to have both lines active at all times. And I really like this strategy because sometimes when people just engage with hope, it means that they then don't get ready. And sometimes if all you're doing is spending your time getting ready, it can feel quite hopeless. So, I really like the fact that if you've got hope and getting ready as your two lines and maybe trying to keep the hope line fractionally in front of the getting ready line, but you've got them both active in your life. I think that's a really helpful way of being able to navigate that pretty tricky space.  

Kellie [00:13:13] Yeah.  

Charlotte [00:13:14] It's really cool. I like it because in therapy I am always working with my clients to find that balance between kind of hope and getting ready, but to actually find... it's a really nice visual image, you know, to think about two parallel lines in your mind and to think about, okay, each week, maybe each day, you know, what am I doing in the two lines space? Where's my hope? What am I doing to get ready? And it works really well for my clients.  

Kellie [00:13:41] What is it about dying that we fear so much? Is it the uncertainty?  

Charlotte [00:13:48] Well, I think a lot of it is around the uncertainty because we can't get information. We can't get good information about the experience of dying, because the only people who could tell us and I'm not trying to be stupid here, but the only people who could tell us are dead. And so, we have to work with what we can see and what others share. And I think what happens is that in the absence of information around the experience of dying, people often draw down on the experience of grief. So, the loss and the sadness that follows death is often what we then kind of link with the experience of dying. So, the idea of like ‘I'm so devastated by the loss of my dad because I miss him so much that I can't even contemplate my mother dying.’ I think the grief experience taps into that. And because as humans, we use learning a lot. If we talk about death and dying in hushed tones and we protect like things that we want people to know about in a really helpful fashion, you know, you kind of want to start at primary school age. Well, not many people have really big conversations around death and dying with primary schoolers and I'm not necessarily suggesting that, but, you know, you know what? It wouldn't be a bad thing if the concept of death and dying was more kind of, like, freely discussed. But we model our behaviour around death and dying. And then, of course, our kids are going to then follow that model and replicate it for their own children. So, we create this whole thing around death and dying, being distressing.  

Kellie [00:15:25] And scary and awful. 

Charlotte [00:15:26] And the unknown is often scary. And in an absence of information, people will fill it with their own version. I think Disney's got a lot to answer for there. On the one hand, Disney probably shows that very positive experience of death. But at the other end of the spectrum, this perhaps a very traumatic experience of death, and I'm not sure either of them are, perhaps accurate. 

Kellie[00:15:47] So what is it about the process of dying that makes it so difficult to talk about?  

Charlotte [00:15:53] I think that people fear well, I know from my work that people fear suffering, they fear pain. And the other thing, they are kind of two big, big things. The other thing I fear is being alone. And interestingly, whereas previously we might have been able to quite comfortably reassure people that there was very little chance of being alone in death, the COVID experience really did change that. A lot of people in the world would have died alone in the last few years. And so, I think that, you know, just even that now being a possibility, because there would be people now dealing with mortality who would know people who died alone, that's a very different thing than going ‘I fear it’ and having people going, it's okay, we're all going to be here. Don't worry. If you know that someone died alone, that's a whole different level of anxiety because it feels like, it really could happen. Now, I don't know that it would so much now, because having said that, there are still some pretty strict rules around it.  

Kellie [00:16:49] It's not even COVID. I mean, we often hear of people being surrounded by family and then everyone happens to go and get a bite to eat or leave the room and then someone dies. So, the reality is you actually can't guarantee to anybody that you're going to have exactly what you’re hoping for.  

Charlotte [00:17:08] That's right. And on that point, making promises just as a sort of a cautionary note, making promises. If you're a loved one, you know, that maybe you can't guarantee is a really tricky thing. So if you make a promise that, you know, don't worry, I'll be there, not only can you not make sure that happens, but you may then be left with regret because that promise is a rule.  

Kellie [00:17:33] And of course, you're the one left . 

Charlotte [00:17:35] You're left, you're left alive to experience that regret.  

Kellie [00:17:39] So when you're talking about pain and suffering, our last episode touched on the really important discussion around palliative care. And the benefits of seeking it early and what it actually does. And in that episode, we talked about the fact that it was very much a long game to help alleviate pain and that wasn't necessarily, end of life. In this context, when we are talking about end of life and palliative care, they can certainly assist you in not being in pain, but that does come at a cost.  Charlotte [00:18:17] For sure, yes. When clients disclosed that, one of the things that they fear is pain and suffering, and if they haven't had any experience with death and dying, and if maybe they haven't really had much medical exposure either, they might not have any understanding of what the process of helping someone, if you like, through their last weeks and hours is. What generally happens in a gradual decline over time, and that usually is weeks to days, is that with an increasing advancing disease, we have an increasing level of discomfort which then is met with an increasing amount of medication. Usually narcotics, opiates, that sort of thing, dispensed by specialist doctors within a palliative care team or palliative care setting.  

Kelle [00:19:10] And that can be at home or in hospice. 

Charlotte [00:19:12] And these are the good drugs. And what happens with these drugs is that you get with the increasing amount of medication, you get an increasing amount of sedation, so you get sleepier, but you don't just get sleepier, you become less aware. So, if you think about it in the moment, for example, most of us, gosh, I wish, are sleeping about 8 hours a night and we were awake for about 16. So, the ratios are kind of 8 to 16. What happens over time when you get towards the end of life and your pain's being managed with opiates, is that the number of hours that you are asleep increases so the 8 goes up and the number of hours that you are awake goes down. Yep. So, 8 becomes 16, becomes 20 and you might get to a point where you are really only awake a very small number of hours a day. And even when you are awake, you aren't as aware as you would be in the way that we are sitting here today. So, all of your senses are a little bit muted, so you be aware of things like people moving in the room, you'd still be able to hear. You might not be able to see in the way that we see very clearly. It might be more might be more blurry. Now, some of these I'm saying through simply through observation and I think from people who've been on high level opiates for other reasons, that it does kind of dial all of your senses down. And that's important because if we have waited to have some important conversations and to say the important things, then the chances that you as the patient will be in good shape to do that are quite low. But also, as you as the patient, you be not all that really able to engage and relate. And if your loved ones are wanting to have the meaningful, you know, this is what I want you to remember these is that these are the lessons you taught me. This is how important you are to me. If you're not really with it, then the quality of those interactions is going to be lost.  

Kellie [00:21:15] If people have very strong beliefs, for whatever reason, that they're not having this conversation. Does truth or logic have a place? Is it going to help?  

Charlotte [00:21:28] Like engaging your rational mind, sort of thing? Look, I think that we have to be really respectful in this space. And just like we can say, it's my life and I've got to live it my way is an argument to say that it's your death and you've got to do it your way. And I certainly it's not my job. It's my anybody's job to tell anyone what to do and certainly not what to do in their in their dying. But I think helping people understand and make more informed decisions rather than perhaps emotion-based decisions can be really helpful. So, if the only reason people are staying away from having the conversations earlier is because of fear of distress and a negative outcome, then helping them perhaps see it a little more flexibly and think, okay, well, even if it is going to be distressing and it very probably will. Could there be an upside to it. What's the benefit of having those tough conversations earlier. And on that point, you know, we were talking before about getting ready. In my mind that getting ready has kind of multiple types or layers, I guess. One is the thinking that you can't talk about something until you've thought about it. So, it's important to do your thinking about like how you want to die. And I've got a whole lot of stuff around that I'll come to in a minute. Then there's the talking. So, there's the conversations and they're super important because that's where you're often spreading the responsibility to the loved ones to make sure that you know what you want to happen does happen. But also, it's about making sure that they know, you know, what's important to you. And then it's the doing. So that's the behavioural stuff, which can be things like advanced care directives and wills. It can be about writing letters to loved ones or making memories like videos. It can even be something like writing your own eulogy. So, there’s a whole lot of doing stuff as well.  

Kellie [00:23:11] Which again, like so much of what we talk about in this series and the last is communication. It's about if you avoid communicating, it leaves space for assumptions.  

Charlotte [00:23:25] And it prevents us from having the good experience that might come from the conversation. What we often do, and this is how anxiety works, is it makes a prediction and its basically anxiety says if we go to that space, if we have that tough conversation, it's going to go badly. I'm going to get upset, my family's going to get upset. And we don't perhaps go beyond that and think, well, sure, I mean, yeah, I'm not going to say that it's going to be easy, but... 

Kellie [00:23:50] They’ll come out the other side.  

Charlotte [00:23:51] You'll come out the other side, you will survive that conversation. And it's very probable. I wouldn't even say possible. I'd say it's probable that there will be benefits from it. And so, by not doing it, we don't give ourselves the chance to experience the benefits.  

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Kellie [00:24:44] Okay, so let's touch on the models of death, where you want to die.  

Charlotte [00:24:51] Yes. So, we mentioned briefly in the last episode related to palliative care that, you know, you can have palliative care services at home or in a hospice. And similarly, you can choose where you'd like to die. You can die at home, or you can die in some way like a hospice. I should just reword that and say you can plan to die at home or plan to die in hospice. And just like so many things in life, plans don't always work out the way you hope. But a plan is always a good idea. It gives us increases perceptions of control, gives us a framework to work with, and something to kind of communicate to loved ones. So, everybody kind of like gets on board with the plan and perhaps has a role in the plan. So, a plan is good, but if the plan is for any reason required to change, having some flexibility in your mind is a good thing. So, dying at home is very preferable for a lot of people in Australia. Yeah, I'd probably say that in my population, in my client base, it's maybe 2 to 1. Maybe like two thirds of people would say they'd rather die at home. Now when people ask me, you know, what do I think? I've watched both models say, Mum died in a hospice and Dad died at home. Dad was a medico, so I guess, you know, we also had perhaps the advantage of lots of medical friends who supported the family through that experience, but I wouldn't say that either was one was better or worse. They were both well managed deaths.  

Kellie [00:26:19] And I think that's a really key point is leading back to planning, having conversations means that not only do you have a blueprint, if you like, that needs some flexibility, it avoids unintended medical intervention. Which means you're less likely to die in a hospital.  

Charlotte [00:26:47] Yeah, absolutely. If you're clear about what you want and everyone around you is clear about what you want. And that might include really, arguably should include an advance care directive, then having everyone know how you ideally want this to play out when and where you do and don't want intervention can be really important because if you're clear about there may reach a point where I don't want to be resuscitated, I don't want any ongoing care, then that may very well mean that you are left in peace and supported to die peacefully at home. Whereas if people think that, oh, you know, we want all heroic efforts and we need to get you to a hospital to deal with whatever's cropped up, it could mean that you go into hospital, and you don't come home.  

Kellie [00:27:30] And if you have not articulated anything to that, whether it be in an advanced care plan, which is a legal document, and it varies in state to state around Australia around those guidelines. But even to have had that conversation. 

Charlotte [00:27:45] Even to have thought about it.  

Kellie [00:27:45] And to have shared that with someone, it means that your medical power of attorney or those loved ones left to make those decisions under pressure. No one wants to be the one to say do it or don’t do it. Don’t resuscitate.  

Charlotte [00:28:02] And then be found to be getting it wrong. But the other thing, too, is that in bigger families or in families where not everybody lives in the same light location, there is so much more opportunity for assumption and dissent. If you've been living, you know, perhaps in different cities or different states and maybe not seeing your loved ones as frequently, it can definitely play out where someone says, Well, Mum said to me last week that she wanted to do X and someone else can say, but she said to me last Christmas that she wanted to do Y well, who's to say which one was the one. And if you're all distressed and you're facing the end of Mum's life, that's a really tricky space to navigate if there's nothing written down to clarify what Mum actually did want.  

Kellie [00:28:48] There is quite a bit of research around to show that in the grief following someone's death, if there has been that decision making and type of trauma, that it really does impact surviving family members wellbeing, but also their relationships because it's a really tough decision or set of decisions that you've got to make when it is really a pressure cooker time.  

Charlotte [00:29:14] That's right, exactly. And so, I think this is a really important thing to remember if you're the person, the patient confronting end of life and you're thinking, well, you know, doesn't much matter to me, like I trust my family, they'll figure it out, that sort of thing, or I don't want to go there. I don't want to have a teary conversation. I don't want to think about it. I want to talk about it. Thinking that it might help someone else can be a good motivator to kind of push through that and go, okay, well, even if I don't want to necessarily do it for me, I want to do it so that I relieve any possible burden on my loved ones.  

Kellie [00:29:48] Sometimes someone's desire to die at home isn't possible because you do need support to die at home. And for whatever reason, whether it's family interstate or someone with young kids. It is important to have that conversation too, because people will turn themselves inside out trying to make your wishes possible. 

Charlotte [00:30:15] Yes  

Kellie [00:30:16] But some others might not want to die at home because they don't want to pass away in the family home.  

Charlotte [00:30:22] Correct. When people when I and I have always unfortunately got a number of younger clients with young children facing end of life. And we talk about, you know, the merits of dying at home, which, you know, obviously being in your own environment and having easy access to people. And most of us have created some sort of sanctuary or nest that certainly sounds nicer than a hospital or a hospital. But I do remind people that if you have small children and again, not my job to tell people what to do ever, but if you have got small children, it is worth thinking about whether you want their time at the end of your life to be very much, you know, like an immersion experience, and that if you were somewhere else, like a hospice, it means that they can be taken home and they can be popped to bed and there is no chance that stuff is going to unfold in the family home potentially, because this stuff never seems to happen at 2:00 on a Wednesday. It seems to have always happened at 4:00 in the morning on a Saturday that I guess you reduce the chances of a distressing event or even if it's not traumatic or distressing. It's just a lot of stuff going on in the family home. So, it kind of maintains their security and stability.  

Kellie [00:31:36] There is no right or wrong is there? Because I've also heard a few people where, it's by planning ahead and having had that conversation that they've made, whether it to be to get in a a medical bed so that that medical bed disappears after someone has died. So, again, it comes back to that planning, for the variables. Some people find it really comforting.  

Charlotte [00:32:02] Yeah, absolutely. And that's one of the things that palliative care services for people at home are great with. They will actually bring in a whole lot of the the sort of hospital type equipment, so things like hospital beds, drip stands, shower chairs, they can install handrails, they'll do a whole lot of stuff that makes the home environment safe and workable for the person who is at end of life, but also for their family members to relieve the stress. And yes, absolutely, it can be the sort of thing that is comforting and soothing. One of the things that I've noted, and this is getting into some pretty, you know, icky territory, but one of the things I've noted is that it can be helpful if you're having some thoughts or conversations around dying at home to consider what happens with bodily fluids. So bodily fluids there seem to be a five, so urine, faeces, blood, vomit, pus- delightful.  

Kellie [00:32:55] That really gets in the way of that Disney death, doesn’t it? 

Charlotte [00:32:57] So not Disney. A lot of us have a very instinctive reflex disgust response to bodily fluids that's adaptive, that goes back to like our primitive response. It's designed to keep us safe. So, I don't want to go near vomit, not just because I don't like the look and smell of it, but actually there's a part of my brain going that's dangerous. Same with blood, same with urine, faeces and pus.  

Kellie [00:33:23] So are you saying, is that an involuntary response? 

Charlotte [00:33:25] Yes. 

Kellie [00:33:26] So that's fascinating because quite often you would think, oh, my gosh, this is your mother, this is your father. 

Charlotte [00:33:33] I'm meant to be okay with this stuff. 

Kellie [00:33:35] You need to step up. I didn't know, because really, because surely, I could get over myself in this instance. 

Charlotte [00:33:44] Yes. So initially, yeah, it's really hard. I mean, lots of mothers will report they can cope with their own kids' poo but struggle to change somebody else's kid's nappy. Yeah. And so, the reason I highlight this is because when we are trying to work out with the client in the family, okay, do you want to start at home and die? You want to be home to the very end. Do you want to stay at home for a period and then go to a hospice? If that's your model, then where's the line? And often the line becomes apparent around bodily fluids. So, when I am no longer able to manage my own bodily fluids, or if you're a family member, when we're at the point where I might have to deal with my wife's bodily fluids. Now, this is big stuff. It is emotionally provocative territory, but this is the important stuff.  

Kellie [00:34:32] Because it must draw a lot of judgement.  

Charlotte [00:34:35] I think there's FONEBO, so there's that ‘fear of negative evaluation by others’ we've talked about so much in this series. That idea that I'm meant to be able to cope with anything and that somehow my coping with bodily fluids is an expression of my love.  

Kellie [00:34:52] Yeah, that's what I'm saying. And to not be able to step up to do that, there would be a lot of shame.  

Charlotte [00:34:57] Yeah, absolutely. But imagine if you've kind of like not gone there, not talked about it and some bodies then made an assumption that they're up for it or they're not, when maybe they are. I mean, they might be up for it.  

Kellie [00:35:10] I do remember in the final stages of my mother's metastatic breast cancer, and she did want to die at home. And it wasn't Disney, but it was good, and we were able to facilitate it. But I was quite taken aback, well not taken aback, but when my mother said to me, I don't want one of my sons to have to change, bathe me or any of that. Now, as her daughter, I was able to step up to do that. But it's not a conversation any of us had had. So, I think your observation and it's just brought it back to me that of course you're going to need, as you get to the end of life, all that sort of stuff is.  

Charlotte [00:35:51] It's real. It's the reality of mortality. And so, this is the big stuff that needs to be discussed or there's a benefit in discussing it for sure.  

Kellie [00:36:01] One of the, not a misconception, but unspoken areas is the actual process of when we die, like what happens. So, we talked about that, that fear of being alone and fear of being in pain, and we've addressed that. What actually, is the process?  

Charlotte [00:36:22] So as I mentioned before, the only people who know this for certain are those who've gone before us. But from an observer's point of view, and this is both because of the work I do clinically and because of what I've observed with my parents, but with other people that I've known that have passed away from cancer, is that it kind of has two models, if you like. One model is a gradual decline over time, and that is often where the medical team will advise, disclose, that we are now at a point where, you know, not only is active treatment not working, but the disease is advancing at a rate and to a degree that end of life is imminent and it might be weeks to months. And often what happens over the next few weeks is what I described before about the increasing discomfort, which is matched with increasing medication, which is matched with increasing sedation. So, you get this gradual decline in functioning over time. And usually that at some point requires someone to be in bed most of the time. So, they go from being kind of like maybe on the couch or still being out and about to being quite confined to bed and not really perhaps eating and drinking very much, tends to be that you become awake less often and then eating dries up a bit before drinking. Sometimes you might still have a drip in for fluid and for medication, but gradually all of your bodily functions slow down and start to shut down. And with the increasing sedation, you just sleep more and more and eventually you go to sleep, and you don't wake up. And there can be changes in breathing and there can be other signals that happen. I’m loathed to get too specific about that, because it can be misleading in the sense that people can then think, okay, well there's a definite kind of sequence of events, and as long as I can see those sequence of events unfolding, then I'll know what's happening. It doesn't always work that way.  

Kellie [00:38:25] It can happen really quickly to can’t it. Things can change. 

Charlotte [00:38:27] They can change really quickly, but also someone can linger for quite, quite a while. So, it's it is very variable. So we've got the slow, gradual decline over several weeks. That's one model. And the second is more like what I call an event-based model, which is where things happen very quickly and sometimes unexpectedly. And that might be because of the compromising of a major organ. So, it could be a big blockage, or it could be a big bleed. And often in those sorts of situations, there isn't much warning and there might be some pain. The pain will be short lived because the event is really quite rapid and often in that situation there might be time for medical intervention, but that it might really be that we get them to the hospital, and they've already passed away. Or they passed away then, or if they are home and everybody knows that's where they want to be, that in fact the the event takes care of itself and that brings life to an end. So, they're the kind of two models, and I just don't think we really talk about those options. And quite often people will be reassured that, you know, it's all going to be fine and, you know, it'll be a good death. And look, a lot of deaths are, but it's not a guarantee. And also, there is no certainty that just because it starts off looking like a gradual, slow decline over time, that it's going to be that it might, but it might not. So having that awareness of like, you know, again, you know, being flexible and having done the work in advance so that you're not having to deal with other stuff when these events are unfolding, is a really good thing.  

Kellie [00:40:02] What happens when still, despite the logic, you can't get some traction from your loved ones to start to plan this stuff. What do you do?  

Charlotte [00:40:15] You talk to Charlotte, or if not Charlotte, a trusted friend, or maybe your GP, or if you're a spiritual or religious person, maybe you might have an advisor in that space, like a minister or a priest. But finding somewhere to be able to get some of this stuff out and even document it, I mean, I do a lot of this with it with clients where if they haven't been able to persuade their family members to go there, that we do it, and then we've got a document that they can then use as a reference point, sometimes they can talk to that document. They can hand it over to other people. The other thing you can do is that if you are still feeling like, okay, perhaps only had one guy, you know, at trying to get my family members to talk about this stuff and I'm going to I'm not going to give up is to do what we discussed in an earlier episode, which is to give them advanced warning, to signpost it, to flag it and say, look, I'm becoming aware that there are some difficult conversations, important conversations that need to be had. How about we make a time to do that? Would that be okay with you? So, you actually ask them. Just like I've said before, you give them the opportunity to say yes or no. You have to be prepared that they might say no. In which case you go back to plan A and talk Charlotte. But you give them the chance to say no. And you make time. You give them advance warning so that they can come to that conversation already having thought about it and maybe themselves confronted some of what's to come in the conversation and you do time limit it. And the other thing that you can do, and my dad did this, you can do a positive sandwich. So, dad was 64 when he was diagnosed back cancer and he died at 67. He was diagnosed just about on the first anniversary of my first marriage, and we were living in Melbourne and  he said, like, I need to talk to you. And I had no idea that it was a health thing. I don't know what I thought it was. Anyway, hadn't occurred to me that my father could possibly be a mortal. So, he came back to Adelaide and said he loved appliances, and he had a new beta video machine, which is not like a VHS. It was before VHS and never went anywhere. Anyway, I didn't know and I'm so old. I got married in the days my first wedding was in the days before, like videography. I didn't know, but he'd had our wedding ceremony videoed the year before. And so, he said to me, like, I've got something to show you. This is so not my dad. Like, he was a gruff old bugger. But anyway, he sat us down, the whole family down, and he put this tape in and he played the footage of our wedding, which was just amazing. And, you know, everyone's in happy tears and it's all just gorgeous. And then he dropped the bomb that he'd been diagnosed with terminal bowel cancer.  

Kellie [00:42:56] Clearly his sense of timing wasn’t that great.  

Charlotte [00:42:58] No, he'd done it deliberately. So, this is the positive sandwich. So, he did a positive thing. Then he dropped the bomb and then he loved European food and wine and he'd cooked up a feast. And so, then we had this amazing lunch with great wine and all kind of had like a like a family celebration. And I've always remembered it because my dad didn't do emotions at all. And he thought mental health was like, I don't know, some sort of falsehood. But it was one example of where he had clearly thought of the impact this is going to have on his two daughters and his wife. And so, I quite often recommend doing a positive sandwich, like it's not going to take the horror out of dropping the bomb. But it does show to the people around you that you aren't being careless or flippant with this material, that you are aware that it's going to have big implications for that for the people you care about. And so, yeah, a positive sandwich.  

Kellie [00:43:53] Should it be done one on one or is there a benefit in doing it in a group, so you only have to do it once. I guess it depends on family dynamics. 

Charlotte [00:44:01] Yeah, depend on what's possible because not everybody's always available at the same time. I think with technology now, I mean crumbs, who'd want to think about doing this in a Zoom format. But I do like everyone hearing the same material at the same time, because what that does is that you actually get to see that everybody else was there and you see everybody else's reactions and you can't possibly then get into a pickle of like, no, but I thought she said or she said to me or I didn't get that bit of information. So, I do think together does have definite merits, but if you then go, well, the only way we're going to do it is together and then we can't do it together, so we won't do it at all. That's rigid. We want to be flexible. So, I think, you know, again, having dot points, having thought about it, written some stuff down can be incredibly helpful because then you minimise the chances that even if you do have to cover it in a in several conversations, you are still likely to cover the same content.  

Kellie [00:45:02] Which brings us to end of life preferences. So, you've touched on how to perhaps get someone to talk about it.  

Charlotte [00:45:09] Yeah. And so, I prepared a document a while ago because in discussions with clients, we'd start talking about, okay, well, like, we might talk about whether you want to die at home or in hospice and who you want to be there. And would you like to be cremated or buried? And we get into the nitty gritty and then people would be like, God, I've got to write this stuff down. And then eventually I worked out well, it might be helpful if I just make a list. So I made a list. And it's I mean, it's a pretty comprehensive list, but I'm sure there are things that aren't on it. And it's called End of Life Preferences. And we were going to put a link to it in the show notes so that if you want to find it, you'll be able to. It's not rocket science, but it is just a bit of a prompt sheet so that you don't have.  

Kellie [00:45:48] And it’s not a legal document, not by any stretch. But it might cover some of the things you might want to cover.  

Charlotte [00:45:53] Yeah. And what I say to people is if you're going to use it, it is a good idea to write down what you want. And if, if, even if you don't know what you want, sometimes thinking about it the other way round and thinking about what you don't want, that's much easier. So even if you don't know, you know, the details perhaps of your funeral service, for example, you might know what you really don't want. So, for example, I don't want a funeral and I don't want any roses, which sounds weird because I have a gardening obsession, but I just have a thing about roses at funerals and I definitely don't want Cat Stevens music playing. My husband has said he's going to do all of those things just to spite me, but they're the things I know I don't want. So even if you don't document what you do want, you can absolutely document what you don't want.  

Kellie [00:46:39] And a lot of those little things which seem like who cares whether there's roses and who cares. But in in times of distress and in the very raw stages and initial stages of grief, which is when you've taken your last breath, your preferences and knowing your wishes is going to bring some real comfort, if not massive relief to those people left behind who don't actually have to make those decisions.  

Charlotte [00:47:13] Correct. And the reality is that if you follow the fairly standard model of death and dying and your loved one's wind up talking to a funeral director or something similar, you're going to be asked a bunch of questions. So having the answers already is incredibly helpful.  

Kellie [00:47:33] At the heart of someone either fearing death or the discomfort of death. What is it? Do we fear being replaced or forgotten or both? 

Charlotte [00:47:47] The common things that people will disclose to me around the the process of dying is that they fear discomfort and being alone. And the common things that are disclosed around the idea of being dead is being forgotten or replaced. They're, like two for each. And it's interesting how it does seem to be that a lot of people are more worried about one side of the fence or the other. So, some about the process and some about the actual event of not being here anymore.  

Kellie [00:48:18] I think it's quite common, particularly when a partner is dying, that you hear of them saying, I want you to find happiness again. I hope you find love again and I want you to be happy. 

Charlotte [00:48:32] I just want you to be happy. And for a lot of people that is absolutely true. But it's also sometimes conflicted. So, I'm not going to sit here and say that people don't want their loved ones to, you know, find a way to live without them and to have happiness. But I think that they're also and I mean, I know this because I have clients say it to me is that there is a real fear around like that. You know what if my kids don't remember me, and especially for mums of of young children, you know, they can feel that real sense of I call it anticipatory grief, where it's this idea of like what they're going to lose by not being here and and not just the fact that they're not going to be there for so much of their children's lives. But the idea that maybe their children won't remember who Mummy was, but also that somebody else might take the place of them and be mummy. And that's a really hard thing to get their head around. And I think that that introduces this sort of conflicted feeling. Whereas on the one hand I want my loved ones to be happy and good, you know, good without me. And on the other hand, I can't bear to think of that and almost and I don't think this applies to children at all, but I think maybe for partners sometimes it's that feeling of like, well, if I'm if I'm going to be dead, the least you can be is miserable forever. And nobody's going to say that.  

Kellie [00:49:52] No, because and that's why they come to Dr Charlotte, because that's a really safe space that you can you actually say that because otherwise you don't look so nice if you say to your partner, actually... 

Charlotte [00:50:04] You need to be miserable, and I don't want you to move on and I want you to just, you know, have a hangdog expression and be crying in your beer for the rest of your life. Yeah. I mean, no one's actually going to. Well, probably not no one, but it's not likely that people are going to say that or feel comfortable about saying that. And it does set up again the FONEBO the fear of judgement, you know, that idea of like, you know, I'm a bad person, you know, even in death and this is the Disney stuff, you know, that sense of like, I have to be gracious in dying, I have to say that I want my husband to move on when I might be feeling sick to the stomach with the idea that he may move on.  

Kellie [00:50:42] Yeah. So, what do you do with that, if that is the reality, even if it's an unspoken reality?  

Charlotte [00:50:51] You acknowledge it to yourself, and you maybe share it with someone like me. We don't want to be, you know, a Pollyanna about this stuff and go, oh, let's put that on a poster. That's a really tricky thing. But I think it is. It's about letting yourself off the hook, self-compassion and saying, you know what, if I've got conflicted emotions in this space and we talked before about conflicted emotions and the fact that humans don't like conflicted emotions. We like simple. We like just one thing at a time. So, if I've got both, I genuinely want no distress for my family, but I also so badly do not want to be forgotten and replaced. I've got those two things clashing in my brain. It's uncomfortable. It's cognitive dissonance. It's about going, That's okay, you're a human being. And if that's how it feels, that's real for you. And you don't have to apologise for that. And it doesn't make you a bad person. It is about self-compassion and letting yourself off the hook.  

Kellie [00:51:41] So what are the ways, we do know ways people seek to not be forgotten. They leave videos or they particularly with young children, they might write them letters. You hear of people making birthday cards for a number of years and things like that. Is there a tipping point between doing something nice like that so that you're not forgotten, and you want them to feel like you're still with them. 

Charlotte [00:52:08] And like they still matter.  

Kellie [00:52:09] ...versus letting them move on. 

Charlotte [00:52:12] Yeah, for sure. I mean, I think as with everything, you know, everything in moderation, finding the balance a lot of the time that when we do the memory making in advance of dying, it is certainly partly about those who are going to be living beyond, you know, when the person dies. But it's also about soothing the person who is going to die and feeling like, okay, I am I am expressing my love. I am making sure that they know that they matter. And as ever, there are no rules with this sort of thing. If you as the person who's dying, if you get to the point where this stuff feels like a burden, that's a good signal not to do it, because then it stops being like authentic and starts being something like it's a should, it's a rule.

Kellie [00:52:57] And I do know from listening to people that when someone says to a person who is terminal, possibly with time to go. Oh, you should, you should write a card for, for the next 20 birthdays and make sure you've got a gift for them for when they turn 21 and when they get their license and when they get married and when they have their first baby. That's enormous pressure. It also takes a lot of time.  

Charlotte [00:53:26] It takes a lot of time; it takes a lot of money.  

Kellie [00:53:28] Yeah, but it's also like, particularly if someone has a young child, how do you know they're even going to have a child? How do you know they're even going to get married? And where's the balance? Is that something that you encourage people to do or is there no right, no wrong?  

Charlotte [00:53:45] There's no right and wrong. But I think that it's a question of degree and often, often it will be limited by other factors. So, it will be limited potentially by how much time and energy and money you might have. So, there might be some natural limits that get imposed. I think that if it has purpose and meaning for you and it's filling up your cup at the end of your life, then I'm not going to say don't do it. But I think it is also, you know, the wise mind to go, okay, well, what you know, what's the likely use of these, the utility and you know, how much benefit and what assumptions am I building in here.  

Kellie [00:54:20] And it's exhausting.  

Charlotte [00:54:21] Yeah, it can be.  

Kellie [00:54:21] Really spending all that time making something for a future time. It is sort of taking the time that you’ve got left.  

Charlotte [00:54:29] And for some people that might have value and for other people maybe not. I have a couple of really nice things that I suggest.  So, one is a’ how to’ book is something that my late mother-in-law did. She did half of it before she unexpectedly died, and the half that she did was excellent. The other half not so much. It's a book. It can be any size. But what I suggest is getting a book, it's about the size of a paperback and something you can fit in your handbag. It's something you write in with a pen like old school. And it's just like your IP, your intellectual property. So as a mum, most of us have a very large amount of IP, and it might be things like how to cook pavlova or how to pay a bill, or how to call the electrician to get the smoke alarm fixed. It could be anything. And when clients start to do this, they discover that they have so much more IP than they ever imagined and quite enjoy putting it down in a book, because I think the thing that I really like about this is it's so individual. Like my IP is not going to be same as your IP or anybody else's. And so, when you have this left behind, it's like your person's brain in a book, their life experience in a book, and people can use it for all sorts of things. It can be, you know, little, you know, wisdom tales, you know, remember this, but a lot of it is how to do things. So, I really like the ‘how to’ book and I quite like a letter.  Maybe if you're not going to do anything else, maybe just one letter. And not necessarily, I mean, it can be anything. But I think some of the clients that I've seen do just magnificent work in death and dying have been around the lessons they'd like their children to know, you know, passing on wisdom. Because honestly, as you get older, it's about all you’ve got. And I love that. I love the idea of being able to kind of like, you know, share my learning and don’t do as I do, learn from my mistakes. I really love that.  

Kellie [00:56:24] And so much of it can be little practical, simple things that actually inject your own humour.  

Charlotte [00:56:31] Yeah, that's right. Exactly.  

Kellie [00:56:32] Because it doesn't need to be all sad. There can be some real joy. 

Charlotte [00:56:36] It can be amazing, and it creates a connection and, and it's that thing of passing on, you know, so it's like the IP doesn't die with the person. It's like all of those wonderful, and it might relate to, you know, even things within the family that turn into traditions and rituals, pieces of information, you know, like if I like collecting blue and white china, that maybe my granddaughter goes on to collect blue and white china, you know, that sort of thing. So, I think the ‘how to’ book is a winner. And I think letters are lovely passing on wisdom and sometimes a lot of clients who might buy a special like a token, you know, for daughters it might be like a locket or a bracelet or something that a photograph or maybe something that ashes can be kept in later. There are all sorts of ways to do those things. And I think, you know, it can give comfort, that idea that there's going to be a physical reminder, like something that might be around someone's neck or on someone's wrist, you know, a lot where they can always be just have that feeling of connection back to the person who's passed away.  

Kellie [00:57:37] There’s sadness, you know, death is not fair really, especially when it comes to people who get cancer.  

Charlotte [00:57:46] Absolutely. And so often it does feel tragic and unfair. And there can be a real sense of injustice, which is a form of anger. So, it definitely can bring out big, fat emotions and not all of them positive. When we talk about sadness, it's a funny thing because just then when I said anger, you know, my brain automatically goes negative, but with sadness. I sort of feel like in a grief and loss, death and dying context, oh, gosh, you know, so I sense a naff, but it's kind of beautiful. Like it's the sadness is about love. Love and grief are mirror images. And so, you know, the reason that it's that we feel so sad about someone dying is because we really, really care. We really, really love them. And that's pretty fab.  

Kellie [00:58:27] I think Winnie the Pooh has a quote that says How lucky I am to have loved something so much that makes it hard to say goodbye. Yeah, yeah, well, or something like that. So it is, a reflection of love. What's the difference between wanting to change something and accepting?  

Charlotte [00:58:48] It's interesting you ask, because I have reflected on, you know, have I ever felt like in therapy with someone that we've ever got to a point of total acceptance of of imminent death. And I don't think we have. Just my personal opinion, but I'm not sure we meant to. I think there's meant to always be a part of us that's resisting, that's going. You know what, I'm not that chuffed about the idea of my life ending, especially if it's ending well sooner than I ever thought it would. So, I don't think that, you know, therapy and confronting death and dying, having the tough conversations, doing the work that needs to be done in advance of dying. I don't think that that's, from my perspective, done with the intent of getting to the point of hundred per cent acceptance. That's not what this is about, but it is about making it a smoother, less distressing, less stressful experience for both the person who's dying and their loved ones. Having said that, what we're really talking about in doing all of this is it's not a changed model. It's not about trying to make it go away or fix it or stop it. It's about making room for it.  

Kellie [00:59:54] And that's what acceptance is, is it?  

Charlotte [00:59:56] Yeah, accepting that we can't stop it, we can't control it, that it is inevitable.  

Kellie [01:00:01] I know you spoke about your blue couch. And when people sit on it and the amount of people that still express their belief or their superstition, that if they talk about death, it will make it happen quicker. At BCNA we aren’t afraid to talk about death and dying. And and one of BCNA’s really important roles is to support people in that effort. And it leads me to think of a wonderful woman, Jules Domigan, who did a podcast with Upfront. She had metastatic breast cancer, and she was gracious enough and actually really passionate about trying to educate her loved ones, but also so that others would benefit from her thoughts on preparing for death. And one of the beautiful lines that she said was that she wanted her family and friends to know that talking about death and dying would not make it happen one second sooner and not talking about it would not make it happen one second later. 

Charlotte [01:01:12] Exactly. I mean, wouldn't it be wonderful if all we had to do to stop someone dying was not talk about dying. Wouldn't that be great. But it doesn't work like that. It's just like anything. I mean, avoidance doesn't make stuff go away, kicks it down the road. And death is one of those things where it absolutely will be sitting there waiting for you. You got to confront it sometime.  

Kellie [01:01:34] And it's sad. And if there was ever an upside, and actually there is no upside to dying, but there is good in being able to say goodbye.  

Charlotte [01:01:47] Yeah, absolutely. I mean, the idea, and I certainly have had clients where, oh, perhaps sometimes through circumstances outside everyone's control, but sometimes through not confronting this stuff, that the goodbyes missed. And that does leave regret and it does increase distress. And that's the sort of stuff that is within your control. Well, likely to be more in your control.  

Kellie [01:02:12] All right. So, I want to take back what I said about no upside. I think what I meant was there's no happy ending. I know from my experience with my mother that I wanted her to die because I wanted her to no longer be in pain or she had no quality of life. But I didn't want her dead. I didn't want her out of my life.  

Charlotte [01:02:34] Exactly. It's so complicated. And those two things, I think we wrap them up in the same language. But they are actually different, aren't they? Like the dying, and they're not being here. They are inextricably linked because you can't have one without the other. But feeling differently about both bits of it, it's a human thing.  

Kellie [01:02:53] It all comes back to those conversations being so important, and in many ways it's an act of love.  

Charlotte [01:03:02] It is an absolute act of love. And that's a really good way to put it, because if you're looking for a motivator, if you're looking for a reason to push through the distress and the discomfort, thinking about it from that perspective, that this is going to be something that is a reflection of how much I love the person who's dying or how much I the person who is dying love my loved ones.  

Kellie [01:03:24] Thank you, Dr. Charlotte. And if you're still listening, thank you for sticking with us to the end of this episode. It's big.  

Charlotte [01:03:34] It's big. And it's I think, you know, we know it's uncomfortable, but if you have stuck with us, then you're in good territory and you're ready to do some of that confronting stuff because hopefully what you've been able to experience is that you can be in and around this topic and nothing terrible happens.  

Kellie [01:03:54] And if it's helped you, it might also help someone else. So please feel free to share this episode. And of course, if you'd like more information on this topic or any part of your breast cancer experience, BCNA has many resources, including the peer-to-peer online network. You can find it all at bcna.org.au. The theme music for our podcast is by the late Tara Simmons. Tara was passionate about creating breast cancer awareness right up until the disease claimed her life. And we're thankful to her family for allowing us to use her music. Thanks also to our podcast sponsor, Sussan, for making Series two possible. And that is the last episode in this series of What You Don't Know Until You Do Unlimited with Dr. Charlotte Tottman, but we are not done yet. Coming up next, Charlotte and I debrief and recap the season. That's next.  

Voiceover [01:04:55] Looking for practical information to help you make decisions about your diagnosis. Whether diseases early or metastatic breast cancer. BCNA’s My Journey features articles, webcasts, videos and podcasts about breast cancer during treatment and beyond to help you, your friends and family as you progress through your journey. It also features a symptom tracker to help you manage the changing symptoms you may encounter during your own breast cancer experience. My Journey, download the app or sign up online at myjourney.org.au.  

This podcast is proudly brought to you by Sussan. Our theme music is by the late Tara Simmons. Breast Cancer Network Australia acknowledges the traditional owners of the land and we pay our respects to the Elders past, present and emerging. This episode is produced on Wurundjeri Land of the Kulin Nation. 

Click here to read Charlotte Tottman’s end of life preferences discussion prompts.