 Hello and welcome to Pukie Ponders, the podcast where I explore big questions with brilliant people. Today's question is, why would knowing more about dying be good for us all? And I'm in conversation with Catherine Manix. Catherine Manix and I used to be a palliative care doctor for 30 years and I've retired early to try and do something useful about the public understanding of dying. And our episode question today is, why would knowing more about dying be good for us all? So do you want to jump in and make a start on that question and we'll see where we go? Right, so I think we've forgotten what ordinary dying looks like. And I think we think we haven't forgotten because we've got lots of images in our minds that we get from popular culture, from TV, from cinema, from media stories. And so we're frightened of what we think dying will be like for people who we love and for ourselves. So we tend to think of it more about being other people because we're each individually immortal in our own minds a lot of the time. And because we're frightened, we're worried about talking to each other about it. So I've had a lifetime or a career lifetime of meeting families who wished we talked about this stuff while we could. And now it's too late and we can't. And what I'd really like to do is take everybody on a path that says, why don't we do it now? Because we can. And then if we want to do it a bit more because we discovered it's not as terrible as we thought it was going to be when we talk about it. We can get it out and dust it down and do it again from time to time. And if you only ever do it once, at least everybody's aired their view. And what are the things that you think that we need to be talking about in those conversations? What are the things that do go on said that people wish they talked about when it comes to death? Well, I think the most important thing as far as I'm concerned is that people don't know what the physical process is. So they are frightened. They are afraid of having horrible symptoms, losing all of their dignity, terrifying the people that they love who will be with them at the time. And it's really interesting that people very close to dying are much more worried generally about the people who they love than they are worried about themselves. It's really interesting how that transformation happens to people as they're going through that process. So the first thing is that we're more frightened than we need to be. And if we all knew what to expect, we would be less frightened. The more I've seen it, the less frightened I am for me and my family. I've had the privilege of seeing it a lot of times, like, you know, somewhere between 10 and 15,000 people who the teams I've worked with have been looking after at the end of their lives. So I've been around the block a few times here. But as I've seen more and more, what I've realized is that there are very clear patterns. It's something we can talk about. We can talk people through while it's happening, like midwives talk us through labor. And if you know what to expect, then you can start to make realistic plans about where that could happen. You know, is it okay for that to happen in my house? Have we got the kind of facilities around us that will make it easy enough for me to be looked after once I've reached the stage where it's difficult to get out of bed anymore, for example. And also then is it okay for children to visit? People really worry about what to say to children in the family, grandchildren, siblings. And so to be able to say to people, actually, this is what we're expecting to happen. This is the sequence of events. And then close to the time to say, so those things we talked about, they've started to happen now. So when you go and visit granddad, he'd be more sleepy than usual, or whatever it is. So I think that knowledge is power really for everything, isn't it? And deaf and dying isn't any different. And I find that a really powerful analogy. And in your amazing book, which I recommend to people all the time with the end in mind, you make that analogy of death and birth both being really natural processes that we need to understand more about. And I haven't died yet, but I have given birth and definitely I found that having a very good midwife who explained to me exactly what was going to happen made it all much more manageable. Down to the point where actually I remember during the birthing process, just remembering her telling me every time that you felt that overwhelming kind of pain from a contraction, knowing that your baby was physically a tiny bit closer to being born. So I wonder, can you explain a little bit about that, the process of dying, what what actually does happen because again I found from your book, it was really reassuring understanding that and there were lots of things I hadn't understood before and it made such sense and it was so helpful. So maybe you could be kind enough just to explain it a little bit. Let's talk about that. Why don't we talk about it as though I'm your midwife for it. So what you're going to find when you get towards the end of your life is that there will probably be an illness that you will have become familiar with by then. The really important thing about the antinatal care, if you like, is that that illness is well managed and its symptoms are understood and how to manage its symptoms are understood. So for some people that's a cancer for some people that's an organ failure like their heart is getting very weary or the kidneys are not working so well, liver's shot to pieces, lung diseases, whatever it is. But the really interesting thing about the process of dying is it doesn't really matter what the illness is that brings us towards dying. The process at the very end is very similar from one person to another. So the first thing is that people are more tired. Now we've all had the experience of being so sick that we felt really tired so it's not unique to dying. We've ever had really bad flu. And we don't mean man flu here you know we mean like flu. The reason you know it's flu is you cannot get out of bed. Yeah, you don't even have to put the voice on when your phone work the voice just happens because you feel so wretched. What happens when we're really sick is that sleep kicks in to restore us to replenish our energy batteries. And that's the same thing that happens towards the end of life except the batteries are like those kind of leaky old mobile phone batteries now it doesn't matter how long you leave it on the charger. The charge just drains out really quickly so we sleep a lot. We wake for a while. And if our illness isn't interfering with our mind or our brain, then when we're awake we'll be us when we're awake. There'll be periods though of an experience again that we've all had which is not being quite awake yet but not being fully asleep. So that looks to people as though the person is a little bit muddled. Sometimes we need to just remind them where they are and what's going on and what day it is and who I am and those sorts of things. And then they can oh yeah yeah okay. So we shouldn't be frightened about that that's that same sleep wake in between place that a lot of us are familiar with. So as time goes by people are asleep more and wake less and progressively more tired, they stick to one room. They're not really interested in food so much anymore. Eventually it's just too much effort to get out of bed. Some people struggle to be in their clothes every day. That could be really important to some people for other people is just the thing that uses up all their energy, when they could be using their energy on other things so it is important to remind people that they've got a choice. So at the very end of somebody's life something quite interesting happens. So it'll be a period of them being asleep. And maybe it's medicine time. Maybe there's a visitor they've been looking forward to see. We go to wake them up and we can't wake them. They're not just asleep. They're actually unconscious they're in a coma. Towards the end of that period of being unconscious, they rouse enough to be only asleep and then they rouse enough to be awake again so what we now know is sometimes when they fall asleep they dip into unconsciousness from which they'll come back. So that's a really important message. First, we don't notice ourselves becoming unconscious they wake up so they had a really lovely sleep. They've got no notion that something else has happened. But the other thing is that if you feel well enough to feel tired enough to need a snooze, you're also well enough to wake up at the other side of that snooze. So lapsing into unconsciousness at the end of life doesn't feel like going to sleep. Sleep is your friend. Sleep is really important for recharging energy batteries and isn't something that we need to be fighting. And I say that very specifically because there are people who've heard. Oh, don't worry about it. You won't be awake when you die, which is technically true, but it's not because they'll be asleep, but now they're terrified to go to sleep in case they forget to breathe while they're asleep. So we've had a period of being more tired, sleeping more, being awake less, dipping into unconsciousness during some of the sleeps and then eventually the person will just be unconscious all of the time. Now, when you're unconscious, what's actually happening is your brain has switched off all the bits that generally keep you alert and working have just gone. The bit that is still working is the bit in your brainstem. So that's the very bottom of your brain just above your spinal cord that drives our breathing. So now we're not thinking about our breathing. Now we're not doing things with our breathing. We just go into automatic breathing cycles. Now, we don't need to think to breathe. We're breathing now. We're not thinking about it. Everybody is listening to us now, though, Pookie's thinking about their breathing. Right. We're thinking about our breathing a little bit because we've both got microphones by us. So we're thinking about not taking a huge gasping breath so we don't deafen everybody. And we're thinking about taking enough of a breath to get a whole sensible phrase out as we breathe out before we take the next breath. So we give breath attention, but we don't need to drive it. But once we're unconscious, there are these very primitive cycles, just reflexes of breathing that take over our breathing. And those reflexes move from being very deep breathing into being progressively more shallow breathing and then back to deep breathing and then progressively more shallow again. And they also move backwards and forwards between fast breathing and slow breathing. Now if you've never seen that before, then you would see somebody who is breathing out perhaps quite deeply. They're no longer aware of their throat at all. So they might have their vocal cords a little bit closed in their voice box. So as they breathe out, they might make a noise, a kind of noise. Now if you'd never seen that before, you might think the person was groaning. You might think the person was trying to speak. But it's really important that we know that this is part of the unconsciousness breathing process so that we don't frighten ourselves or worry what we're missing what we should be doing for this person. And other phases in that breathing cycle, it might be that it's at a fast phase, but it's quite shallow. And it could look like the person's panting. So somebody might worry that they're breathless, or it might be simply that because they're so deeply unconscious now they can't feel the back of their throat. Now normally the back of our throat is one of the most sensitive places in our body isn't it, you know, if you've got a toast crumb, or a drop of tea on the back of your throat. We will cough, we will retch, we will swallow, we'll try really hard to get that clear. And there's now lying and there's a bit of saliva maybe, or a bit of phlegm from the lungs, or maybe the fluid that people are using to keep their mouth nice and moist. Just a bit of it lying at the back of the throat, but they're breathing past it in and out, and we know what happens to air in fluid, it bubbles. So we hear the bubbling noise, a kind of rattling noise, and families sometimes think the person is drowning, they think maybe the fluid in their throat is welled up from their lungs and their lungs are full of fluid, rather than it just being a tiny little film there, that ordinarily you would just cough or swallow away. But they're so relaxed now they're so deeply unconscious that they're just not aware of it. So, understanding the breathing and understanding those funny noises, because it's the only time we would ever see somebody as unconscious as that, not in an intensive care unit. That's the only time we would ever come across those noises so why would we recognize them, we don't come across them in other places. And then this cycle of breathing will move eventually to one of its slower phases and there'll be pauses. And the pauses get longer. And then sometimes we move back into another one of the fast phases. And sometimes there's just another breath out, and we wait. And there isn't another breath in. So there's nothing special about the last breath, there's no kind of sudden rush of pain or choking or panicking or, you know, nothing like EastEnders. Very, very gentle, to the extent that lots of us who work in palliative care have walked into a room where that's recently happened and the person surrounded by their family, and nobody's noticed that the breathing has stopped. Now that's not what most people are expecting, is it? No, it's much more peaceful than perhaps we might imagine. So as a process, it's more peaceful than we would imagine. And of course, if we understand it, we need not be so frightened of it. But it's going to be sad because it's a farewell. So I don't want people to think that I'm saying, come on now, it's all marvellous, you know, dying, it's not as bad as you think. It isn't as bad as most people think, but that doesn't mean that it isn't really sad to be saying goodbye. So there's lots of emotions going on in the room as well. And I can remember sitting with my own grandmother. You know, I was a consultant in palliative care. I'd seen thousands of people die, and she was making these breathing noises. And half of my head was saying, there's my Nana making the breathing noises. And the other half of me is kind of listening in and looking at her lips and checking and is she trying to talk? Am I sure she's not uncomfortable? And that was really helpful for me to understand that it doesn't really matter how many times we've told a family that this person is not going to feel discomfort. If they need us to come and check, we just have to go and check because this is their person and they love them. And this was my Nana and I loved her. And I have to kind of tell myself, you know what this is. It's hard though, isn't it? Even when, yeah, as the expert, when it's someone in your own family, in whatever sense, you know, so my thing is mental health, when it's someone in your own family, you can't override that deeply personal response, can you? No, and people shouldn't ask us to, should they? We need to be family when we're family and not to be. I mean, my mum is a teacher and I can remember being out and about in the village where we grew up and people asking her in the supermarket about their children's reading progress or how to help them with their maths homework. And I used to feel that, you know, this is my mum's mum time. You shouldn't be taking my mum off me for the benefit of your child because this is our time. So it cuts all ways, doesn't it, for professionals, we have to be allowed to have our own experience of family time too. Kind of noises, the breathing noises. I have to say that was one part of the book that I found especially helpful because it is distressing. I've sat with a few people now when they've died and actually I've always thought maybe there's something a bit wrong with me because I kind of, I don't know, it always feels like a real privilege being at someone's bedside in those final kind of weeks and days and it's something that's never really scared me as such. But I do find that very end, but I've not understood it before. And actually once I understood what I took from your book had been that those noises which look like distress were actually a signal that someone was really, really, really calm. So kind of the opposite of what I thought I was seeing. And that, yeah, the death rattle in particular that we, you know, I don't know, it really flipped my thinking on it, I suppose, which was helpful. Yeah. And I think that's been a really interesting response to the book generally because I've had huge, huge numbers of people getting contact in really creative ways. And lots of them have said exactly that, that I was with my dear person when they were dying. And I was convinced that they were choking or drowning or distressed or in pain or trying to speak. And one, one lady said, you know, now I've read your description of it, I realized my mum had a five star Hilton death. And we know what she means, don't we? But lots of people discovering that their experience had been ordinary dying, a deeply unconscious person and just not enough explanations, not enough midwifing going on alongside them. What should we do when people are dying? How aware is someone who's dying of the people around them? Is it helpful to the person who's dying if they're accompanied or are they not very aware at that point? What's your thoughts? That's a great question. So the absolute scientific answer is we don't know that we know that people move between different levels of unconsciousness and we know that in lighter levels of unconsciousness people are quite aware of things. So to, for example, there are some dentists who use light sedation to help people who are terrified of going to the dentist, but the person is still awake enough to have a safe swallow to follow the instructions that the dentist is giving them. The thing that's nice about the injection the dentist uses is that they don't have any memory. But the whole time that person will be slightly sedated but absolutely present to what's going on, even though they don't remember it afterwards. And we know from people who've had really bad head injuries, which have rendered them unconscious, and then they've recovered afterwards, that they know who visited them in hospital, for example, because they heard them while they were visiting. But we didn't really know how much that applied as people became much more unconscious towards the point of death. But the last year there was some really interesting research came out of British Columbia in Canada, where a group of people in palliative care who themselves to be dying agreed to be in a study where they would wear electrodes on their heads that were attached to a little device. I think devices getting smaller is really helping. So the device I assume was tucked under a pillow rather than being some massive machine like EEG machines, electroencephalogram machines used to be. And this machine just recorded their brainwaves and when they were awake, they had awake person brainwaves, and when they were asleep they had asleep person brainwaves and when they were unconscious, they had those very slow waves that we have when we're deeply unconscious. But what they were able to show was that when there were noises in the room, the person's brainwaves changed, even when they had the unconscious pattern in the background. So when people spoke to them, their brain responded. Now, we can't know without functional MRI scanning, which I'm not sure is the right thing to ask a dying person to do for us. Whether that was simply a kind of jump in a wakefulness, or whether they actually thought that's my cousin Jimmy and he's telling me about his new motorbike, you know, we don't know how much those people heard, but those of us who are regular attendants at deathbeds certainly see people become more settled when the right voices are in the room, or become more settled when they're told a piece of news that we know they can't possibly take in because they're completely unconscious. And then they settle after they've been told, you know, the baby's born or the sun has arrived from South Africa or whatever the news is. And we can't explain that. And this recent research from British Columbia perhaps is beginning to give us some of the explanation. So there always was a kind of folk story that hearing is preserved very close to death, but folk wisdom often is derived from, you know, millennia of observation and experience and it seems like this one has got at least some truth in it. Absolutely. And, and I think it's a lovely thing to believe, actually, as you know, if you're with someone when they're dying, it's nice to think that they might know that you're there for yourself, if not. Yeah, I think that's really true. And so something that we try to encourage people to remember is if people need communication aids if they wear hearing aids, if they wear glasses, try to remember at least when they're lying in words because it's uncomfortable to lie on a hearing aid, or it's uncomfortable to lie on the edge of your specs isn't it, to, to give them those extra things so that they will be able to hear and also remember we've got lots we've got five senses. So I lost countless of tubes of hand cream I've given to families to say, you know, why not massage some cream into into your mum's hands. I think that I think the front of your dad's legs look a bit dry why don't you massage some cream into his legs. So we've we've got touch. I ask people to think about what's what's their favorite smell. What's their favorite taste. I've seen people deeply unconscious synchronize their breathing to music in the room. Wow. So it's so there's more going on them we really know, and lots of really interesting grounds for research I think. And I think it makes so much difference when someone's dying when there is someone like yourself who is, you know, totally unafraid of that process and helps those of us who are less familiar with it to try and allow a good death. I think you know a good death is important isn't it I always remember when my grandfather was dying. He asked very very near to the end of his life if he could have some whiskey and it was in hospital. And it's one of the last conversations that we ever had. And I remember asking a consultant would this be allowed. And she said, but of course it's allowed at this stage you can have whatever he wants but only if it's a really good single malt. Remember thinking this is someone who really gets it and she allowed you know that for me is such a lovely memory actually. And, and, yeah, I don't know I think you make memories right up until the very very absolutely absolutely and one of the things that happens is we're telling the story aren't we we're living the story. So you watch people coming to visit and the new visitors are given a handover by the people who've been there about the last thing the person said the last thing they've eaten or drunk. The last time they seem to be awake. And maybe the new visitors take over and the other visitors go home for a snooze. And then there's another handover and gradually the story grows. And this is the narrative that we then use in our bereavement to make sense of that person's last part of living. And that's the thing we've been deprived of of course over the last year when families have been separated at the end of life because of infection control concerns. And it's very, very hard for people who are grieving when there's nobody to tell them the story. Really tough. And what kind of good death look like in these circumstances. What have you learned. I mean it's presumably been a really challenging year in the palliative care world because everything we ever knew has kind of gone out the window a little bit. It's been so hard for people so I haven't been at the bedside of dying people of course because I'd retired and I went back to work during last year but my work was about staff support and helping people to develop the communication skills for those heartbreaking phone calls that they were having to make all of the time from the hospital either to be breaking unwelcome news or to be brokering end of life conversations between people who were too weary to hold a telephone by their ear and their families who wanted to talk to them. And the thing that distressed the staff that I talked to more than being with so many people who were dying when they shouldn't have been was they were dying when they shouldn't have been and the right people weren't there. And, you know, the huge amount of compassion and sorrow, the same message over and over again from everybody who was supporting them and everybody got involved in supporting them. Healthcare students from all the disciplines. People whose wards had closed because COVID was too much of a risk in the hospital coming to work on the wards had people with COVID. We had senior surgeons behaving as junior doctors in the intensive care unit because they couldn't be consultant intensivist but they could take the blood specimens and they could help to turn people onto their tummies to help with their breathing. We had receptionists taking food orders so that we could get refreshments in that the person liked the kindness has been absolutely astonishing. One of the things that I think has been helpful for people is for a long time now intensive care units have realized that patients who've been in intensive care for a long time have fragmented memories of what happened to them. They've been doing this sleeping waking unconsciousness thing and they've kind of taken snapshots of reality in between periods of either being too sick to be awake or being sedated so that they would tolerate having their breathing tube. And so when they wake up they've got this kind of mad jigsaw of half memories that they can't quite assemble into the story of what happened to them. Michael Rosen's new book describes this absolutely brilliantly but he also describes the diaries that I see use keep where they almost written as letters to the patient say this morning I did this for you this morning I spoke to this person about you. This is the message they left for you. This is what happened to you this afternoon. And he's included parts of his ICU diary in his new book. But during COVID a lot of places have taken those diaries from ICUs and they put them in the general wards as well. So that families have access to the story. But if the person has survived, they've got their story and they can make sense of it. But if the person hasn't survived that story is recorded there now there's a bit of a problem because it's part of the hospital record, which belongs to the patient and the hospital but not the family. It does mean that they can go in and somebody would be able to say to them this is what happened day by day. And you know when there's a pause in the action it might be that we'll have time for people to copy those diaries and let families have them. I would like that to happen. It's like a really important thing that might provide people with at least some answers to those questions that they might have it's it's such a such a difficult thing and many people I've spoken to have been you know really distraught when a loved one is very unwell and you feel unable to be there. So are there things that you've learned about how we can support the living when someone is dying in the in, you know during these COVID times. So those diaries sound like they're quite important are there other things because I think it's not just about the person who's dying it's about the people. Yeah, you're you're absolutely right so in the same way that dying people worry about the people who love them. And so actually being able to the hospitals where I work they invested in tablets very quickly so that every single ward had a ward tablet that would could be cleaned according to a proper protocol as it moved between patients between beds because not everybody has a smartphone. And so virtual visiting was able to happen. We were able to make sure that people had contact with their families. We had, you know children singing nursery rhymes to their grandparents and people being able to tell them they're, you know what's happening at home of course nobody had any news that was the other thing because we were in lockdown. So, actually people were at home. There was no distraction they were locked in their houses they were allowed out for exercise or to go to the shops. So it was such a peculiar time to then be carrying that sorrow and concern at the same time really really difficult. So supporting those people one, one of the things that has happened is that the regular phone calls meant that particular staff got to know particular families, and in some places they did that very deliberately. So in Rachel Clark's new book which is about pandemic breathtaking, she describes a particular medical student, who's the kind of go between for for this patient, and the patient's family. And there's a continuity then of it being that person hearing the messages being able to put them in context being able to go back and update the patient you know that thing we talked about yesterday. So the main news is, and that's enabled it again the bits of information to sit in the narrative. And I think having different people giving you information day by day, if they don't understand the story, they can't give it to you in the context of the story that it sits in. So I think that's been one of the really important things we could learn from that that if we are ever in that situation again, having consistent messages for messengers for particular families is a really useful thing to do. Sounds really important I mean so much in life seems to come down to really good sort of open and honest communication doesn't it when we talk more we learn more and we're more able to help each other. And I wonder what, what are your thoughts about how, you know when and how we should be talking to children and families about death and dying because one of the things that you said from the beginning of this conversation was how you're trying to make people think differently about death and dying and I wonder how soon is too soon to start talking about those things when should we have these conversations what should they look like. I don't think there is a too soon to be honest there's such a wonderful array of children's books to help us grown ups to find a way to talk to children who are just curious. Aren't they hasn't got all the layers for children. So one of the things I think that's really important is that we talk about dying and we look for opportunities to talk about dying from before it feels awkward. So that's really why they're still learning words and you know every time we go out for a walk they'll be a deadly for dead flower dead beetle. And you know I can remember being out with a friend and our, our tinies and me saying because you know that's the way I roll look there's a dead beetle. And her going, Oh, you're not going to pick it up are you don't know we're not going to do. We're going to do curiosity, we're going to do, we're not we're not going to put our layer of additional adult complexity onto this, this is a dead beetle, how many legs is it got. What color is the other side of it, has it got feelers, I don't even know the names of the anatomy bits. But what's really interesting about this beetle is it isn't doing anything. Because it's completely still. So no it isn't just asleep. It's much more interesting than being just asleep, it's dead. Okay what's dead. Okay well that's a million dollar question isn't it, but it stopped being alive now it's finished being alive now it will never be alive again. So what's happening to the dead leaves so we find a leaf skeleton so so it's gradually disappearing. And actually what's happening is, it's gradually turning back into soil. So all the little bits of this leaf that aren't there have gone back into the soil and Beatles a bit more solid than a leaf, but it will do the same thing and gradually it will turn back into soil. So let's just leave the beetle there to carry on turning back into soil and we'll go to the shops and we don't, you know, not every conversation has to be about death but regular conversations about important stuff become very helpful. But one of my parents in laws cats. My, that then probably two year old three year old son saying is mini going to die soon. What makes you ask that is as well because all of her bones are sticking out. She's turning back into a Skellington. Isn't she Skellington. She was right mini was a very old cat and all her bones are sticking out and yeah she wasn't long for this world. And clearly it was her ninth life because she died at the end of it. But he, you know he was drawing his conclusions from what he'd seen about other things and he knew that after we die. He turned back into soil and the last bit that's left is a skeleton. So he kind of put two and two together and he's actually got four by the wrong route. But it's the cat going to die soon yes. And, you know, subsequently to be able to say, do people look like Skellington's before they die as well mummy. Well, some people do look a bit like Skellington's before they die but a lot of us don't. Why do you think we get less good at that as we get older, because that's been my experience to when I'm teaching school staff mainly but other people too about how to support grieving children. One of the key bits of advice I seem to find myself giving is, well just kind of step back and give them space and allow the process to happen because actually particularly little children or children with with special needs. Generally they're pretty good at grieving, as long as we don't interrupt it and we, you know, provide space for curiosity but as adults we're not necessarily so good at that are we. Interesting isn't it it's part of buttoned down emotions generally I think isn't it that somehow thoughts equals good emotions equals definitely not in public. We're the same with a lot of our strong emotions are strong joys and excitements as much as our sorrows and our anxieties aren't we, we try to keep everything very even and there's kind of public face and there's there's there are things that it's okay to to demonstrate and then other things where it looks like you've lost yourself control, which of course sometimes we have, and that losing our self control is seen as a bad. So we shouldn't be too joyous we shouldn't be whooping around with excitement in the office when we've just got a really great results or whatever it is. And neither should we be in tears in the corner or quaking with fear, but actually that's the human condition and why can't we just be human with each other. So I think we've got all sorts of boo to boo beliefs about the expression of strong emotion. And then we police each other to make sure that I don't say something to you that triggers you into experiencing a strong emotion because that's bad for you to feel an emotion so strong, and it's bad of me to have done that to you. And it's all nonsense. Isn't it all complete nonsense. And I'm thinking of an occasion when one of my colleagues came back to work after bereavement leave. And it was the first time we bumped into each other because I was part time and I come back to work halfway through the week that this person had come back to work. So the first time I saw them was in, you know, it's proper NHS staff kitchen it's about the size of a postage stamp and we've got three people in there trying to make coffee. And I said I was just I was just so sorry to hear about your dad really really sorry to hear your dad died. And it's lovely to have you back but you know, look after yourself and shout out if there's anything we can do. We're at work what else can I say. Anyway she went off with a coffee and then the other colleague who was in the kitchen with us. Can't believe you said the word dead, or died to Carol. Carol Carol was fine with it, you know, my conversation was with Carol it wasn't with this other person. But here's the thought police now, saying, Oh, it's sometimes it's not okay to say those things. It's not all right to mention death to recently bereaved people, because you might in some way destabilize them. And actually, if we can say, I'm really sorry to hear that your person died. And if you want to talk about them, when we get a chance, I'd love to hear about them. I think of a better thing to say to a bereaved person then give them chance to say that person's name and tell their fantastic stories about that person, leaving the ball in their court to pick it up so we shouldn't be insisting, but we certainly should be inviting. And I think we fall over ourselves, don't we, and sometimes for want of getting it, you know, we worry about getting it wrong so sometimes we, we don't say or do any of the things that perhaps we should. I always think it's better to have a clumsy and awkward conversation than not to have one but I don't know if that's right. So who is it who says stay awkward and brave or Brené Brown, stay awkward and brave. Yeah, and she's absolutely right. And people recognize that we're doing our best and it's hamfisted. But so many people who are bereaved talk about the loneliness of nobody getting in touch because they're so frightened to say the wrong thing. They say nothing people crossing the road to avoid them. How, how heartbreaking. And I guess that that's particularly true if it's a death that was unexpected or when things haven't happened in the wrong in the right order so you lose a child for example presumably that's a time when we need to create as much space as possible for someone to talk about that if they want to but we'd feel perhaps most awkward in doing so. So certainly I know in schools I've had parents talking about their own self consciousness of my child who was in this child's class, having their next birthday, moving up to the next class, adding a friend to the group that this child is now absent from, and wondering whether it's okay to talk to the bereaved parents about the life that's going on for children of the same age. And, and of course, it isn't it isn't, but it's far lonelier to not be hearing anything than to be hearing the latest news but also then being able to reminisce about the time when their child was part of that group. Yeah. What, what are the conversations that you think we should all have so that we are kind of ready for a good end of life I remember when my grandfather the one who had the taste for whiskey. When he went into a nursing home, actually it turned out very close to the end of his life we thought he probably had another 10 years of time. One of the first things they did with me was sit me and him down to go through his wishes and I remember at the time feeling quite affronted and thinking well we're nowhere near that why are we having this conversation it feels completely inappropriate. And then a matter of weeks later thinking, thank heavens they have those conversations with me I know exactly what I need to do and exactly what he wanted. And yeah that for me was an important learning moment but it wouldn't have happened if it hadn't been facilitated by really skilled staff and so I wonder what your advice is to families about what you know when as a mum when should I have those conversations with my children, for example. So, the Chinese adage when's the best time to plant a tree. The answer is 10 years ago. When's the second best time to plant a tree today. So, let's not wait, let's not wait till we wish we'd done it. Let's start early and let's think about the things that are important so these don't have to be dreary conversations. The point about dying is it stops your life and it stops your opportunity to do the things that matter to you. So there's this finite time in which we can do what matters to us and experience the things that are important for us. So those are the conversations to have that's where this conversation takes off. What matters to you what gives you a life meaning where does your pleasure come from what's the best thing that's ever happened to you granddad. What a great conversation. And once we have thought through for ourselves what really matters to us and told our important people that then even if we are then overtaken by some kind of medical event where now we can't give an account of ourselves. We haven't got round to appointing people with powers of attorney, and we haven't written advanced decisions to refuse treatment and all the kind of different complicated forms that we could fill in to help to be asked what how to be asked to help to make a decision, which is usually a medical decision where the person who's making the decision therefore is the prescriber of the treatment has to now make a best interest decision that's the way the Mental Capacity Act works. We can't say what they want. Nobody else in British law has the right to speak for the patient unless they've been legally appointed as their person with power of attorney. So, the doctor, or if it's a social, like a care decision social worker has to make a best interest decision. One of the reasons of that includes trying to work out what matters most to this person, what they would say, if we could just kind of sit them up and get them to have 10 sensible minutes with us. And we find that out from talking to the people who know them best family, friends, often care home staff we've looked after people for a long time. We're not asking them to make the decision. We're asking them to be the representatives of the opinion of the person about whom we're trying to make the decision. So, what matters most to your granddad? Well, what matters to him is the football, a single malt, being able to see trees and sky and hear birds. Okay, right. So the decision is, are we going to send him to hospital on the off chance that some very complicated treatment might make him better? Or are we going to keep him here where we think he won't get better, but he's allowed to have his family around him and we can open the door and he can see a tree and there are birds singing. Medically, I can offer him all these treatments, but actually, ethically, I think what we're deciding here is if he could sit up and tell us, he would want to be here with you with that tree. And not in the hospital, in a place that's confusing and muddling for him now because it's harder and harder than it used to be for him to understand the world. And then have treatment that is unlikely to be particularly beneficial for him, but for sure will stop the things that matter most from happening to him because the things that matter most are you, the tree, the single malt and the football results. We can have those conversations, can't we, of what matters most and their joyful conversations and we should start them early. We should do them as rights of passage so maybe you have a really important what matters most conversation when you move from first school to high school. When you get your first job or when you go into further education. When you buy a house, or when you set up a partnership with another human being. When you get a job, when you change jobs, every birthday with a zero in it. I don't know you can make up the rules, but it's something that we need to keep doing and keep doing and keep doing because what matters most to us as a journey isn't it changes. You know, children didn't matter to me till I had children. Nothing will ever matter more to me now than those people who I didn't even know when I was having a what matters to me conversation when I was 30. It's an ongoing conversation about what matters. And the thing that we hear people saying around deathbeds, they had the same things as well as they're saying the things that really matter. Thank you. Often it's I'm sorry. I wish I'd done x y and said better. And also that thing that you know that time we fell out I don't want you to worry about that anymore. And at that time we fell out. I still think you're rotten about it, because that happens to. But largely it's about reconciliation is about making peace it's about restoring relationships and I love you over and over again. That's what people say to each other even people never use the L word before, find ways of telling people that they love them, when it really matters at the end of their life. It's a duty to only be whispering that into the ear of an unconscious person where you're not quite sure whether they can hear it when you could tell them today. And if they really like it you could tell them again some other time as well as often as you like between now and when they're not here anymore. So I think those are the conversations to have and they're positive, loving, lovely conversations. One of the greatest gifts that a friend ever gave me was when same grandfather was dying. He, I had the power of attorney and had agreed for him to be on the palliative care pathway, but he was still kind of you know somewhat somewhat there and in and out and I remember just at that point it felt so awful to sign. And you know to agree yes he's dying basically and having to make that decision. And I went to my car and I called my best friend and I cried and I cried down the phone to him. And I told him all these things and he just went what are you doing sitting in the car telling me this go and tell him. And I did. And he was so right just everything you want to say he's still listening he's still there some of the time. And it was, it was, I don't know I just needed someone to take me in hand and tell me that and I think we need that sometimes don't we, we need those people to. When we, when we are in an emotionally fraught place it's really hard for us to think straight isn't it it's really discombobulating and to have somebody who's a step back to be able to say, tomorrow you'll wish that you had done this and sometimes that's a really great test of how to behave in a day in a week in a month in a year. What will I wish I had done, what will I wish I had said to it. Thanks for you your book that I love so much, and particularly I think for anyone listening to this the audio version is just incredible. And I've recommended it hugely and I know that you made some video content that goes with it's been watched literally millions of times so you've definitely had a huge impact with that what what's next I know you're working on the next one I don't know how much you're able to say about one. Okay, because it's nearly ready to go and in fact, terrifyingly I noticed that actually there's a write up about it and the cover on waterstones websites are clearly the cat is no longer in the bag. So it's a book about tender conversations about that conversation that we've all got inside us that we know we need to have but we're just a little bit anxious about starting it or what words to use or how you're going to respond to me if I try to have that conversation with you. It's from my experience in medicine and in cognitive therapy but also just you know from being a human. So it's not all end of life related although it's again it's lots of stories like with the end in mind. And it's called listen. Because actually that is the key really to that tender conversation. We think that we need to get somebody really good talking to. But actually what we really need is to give somebody really good listening to. So this is a book about how can you find a way to trigger the things that that person needs to be able to tell us how do we find the questions how do we find the words that allow that communication to open up. Wow. Like I really can't wait to read it I'm very excited about it. I'm sure you're yeah be excited to see how it how it kind of lands in the world as well and I hope it will have you know if it has a fraction of the impact that with the end in mind had then it will be an incredible thing. What thought would you like to end with Catherine. I would love people who are listening to us to think of three really important things that they'd like to tell to somebody very particular that they feel maybe a little bit awkward about saying the things that they will wish they had said if tomorrow they get the really difficult news that that person isn't going to ever be able to talk or listen to them again. And I'd like them to use maybe this month to find a way to tell them, write it down, send a text or picture actually have a face to face conversation if we're allowed to do that by then. Just don't keep it in you. It's, it's all born out of trying to understand each other trying to build bridges between each other. Go and stand on your bridge.