Dr Kathryn Mannix has witnessed thousands of goodbyes. Here's what she’s learned

Foreign.

Thank you very much.

Right. Well, thank you for having me and for that very kind introduction. I was a palliative care doctor. I worked in palliative care in the UK for 30 years. And over that period of time, although I worked in hospices, I also worked in people's own homes with community palliative care teams, and largely for the latter part of my career as part of a liaison palliative care service. So I think the first important thing to say to everybody who's listening is palliative care isn't about dying, that you don't have to be dying to meet the palliative care team. The palliative care team are there to help restabilise and rebalance the joy of living for you, living the best way you can with whatever illness you're currently suffering from. But it is true that we meet a lot of people who are in the later stages of living and who are beginning to die from the illnesses that they have, because that's when the symptom challenges start and that's when they need us. And so it means that I spent those 30 years alongside people who were reaching the ends of their lives and could see how precious and important that time was for people, and I could see how well it can be lived at home and how difficult it can be to carry on caring for what maybe a family thought would be a week or several, and it turns into months or maybe years. So both sides of the being at home coin the joy of being in your own place, but also how hard it can be to become less able to do things and more in need of care. But also meeting people in hospital who generally. Hospital is not anybody's favorite place. It's not very private. It's difficult to have those really important conversations with the people who matter most to us. You're surrounded by people who are sick. Hospital is a really bad place for catching other illnesses that other people have brought into the hospital with them. So you come in with one problem. When you end up with several that you acquired while you were there.

Get out of hospital, how to get home, what's the escape plan. That's right. And yet we know that around half of people, despite our campaigning to improve it in Australia and In the uk, it's different in different parts of both of our countries, but there are more people dying in hospital than the number of people who would like to live that last part of their lives in hospital. And so that made me feel we. We could do better. We could do better at this and that we need to see the last part of living as a part of living and not just give it this badge. Dying, which doesn't really tell us very much about it, and it doesn't help every day to be a day to be embraced and lived through and enjoyed as much as possible. So we've stopped talking about it. It's become a little bit impolite, even, I think, to have conversations about dying. You know, mustn't say the word. And if we can't talk about it, then how can we organize ourselves for.

No, it's so interesting meeting people in hospital and, you know, they've had an illness that we know is life limiting and they've had it for a long time. And they could describe how, you know, two years ago I was driving my car and I was growing my vegetables or I was pushing a trolley around the supermarket. And this year I can hardly get out of my house. And for the last few weeks, sometimes it's a struggle even to get out of bed. So they're able to describe their own trajectory, or family can describe the trajectory of the sick person. And yet they almost stop the movie at that point and don't think about if this trajectory continues, where is it going?

Oh, you're so right. And one of the things that I come across over and over again is that people want to live for a longer time and there's nothing wrong with that. But we have to remember that if you get an extra decade on the end of your life, you don't get to repeat your 30s. You know, you're into older age and that's a completely different beast from being in midlife. So we need to think about what it is that we wish for and how will we carry ourselves in our midlife into older age. By doing the prep early on of the way we eat and the way we exercise. You know, carry a healthy, as healthy as possible body into our older age is a gift we can give ourselves.

That's right.

We are. And when I first qualified, you know, and I was a junior hospital doctor, probably a third of deaths were sudden, unexpected deaths because people were dying of heart attacks and strokes. And now because we've got such good early treatment to look after people's blood vessels and keep their diabetes under good control, people are far less likely to have heart attacks or strokes at all. But when they do, they're not of the severity or we've got treatments that can reverse. It's usually an obstructed blood vessel. We can and obstruct it quickly enough that the heart doesn't fail or the brain damage doesn't happen from those strokes. So it's great that science that medicine has progressed to stop those sudden, unanticipated, devastating bereavements for families by somebody being well one day and dead the next day. But instead we're surviving to develop usually a kind of collection of the illnesses of wearing out organs because our organs are as old as we are and you know, some of them aren't running that well by the time we're in our 80s and 90s.

There's a particular family and it was a family that illustrated something that I'd seen many times, but this family, they were my tipping point. So I was working in a big, busy teaching hospital and one of the things that we'd done as a palliative care team was a fantastic piece of work with our emergency department. Because people are arriving in the emergency department because families have called an ambulance or they've stuck somebody in the back of the car and driven like mad up to the hospital. And when people arrive there, some of them are so sick already that it's likely that they're going to die. And it might be that hospital treatment will save them, which means they won't die this time. But of course, we haven't cured death, it's just they won't die this time, but also some of them will die this time. And we need to be able to talk about this person being sick enough to die, having the kind of anti dying treatments, but also putting treatment in place in case we can't turn it round so that we're doing parallel care treatment to try to sort out this chest infection or heart problem or whatever it is. And also in case we can't stop dying happening, what are the important things we should be doing? Are the right people here? Is there unfinished business that needs to be attended to, those sorts of things? So we'd been doing that piece of work with our emergency department and that meant that when they had a particularly challenging situation, they would send for the palliative care team to come down and work alongside them to help sort that one out. So we'd been called down to the emergency department for an elderly man who had just been brought in by ambulance, blue flashing light with his wife, and he'd collapsed in their kitchen that morning. And the ambulance crew, the paramedics, highly skilled professionals, had been giving him cardiopulmonary resuscitation. So pressing on his sternum, on his breastbone, to squeeze his heart, to get the blood with oxygen that's in his lungs, to keep his brain alive, to keep his kidneys alive for long enough that if there's treatment for the heart problem, he's not too damaged for the treatment to work. And by the time I got there with one of my palliative care nurse colleagues, he'd had a defibrillator put on his chest that electric shock that sometimes restores the heart to beating again. And what we could see was that the heart was doing its electrical thing again, the way it should, but that that wasn't translating into squeezing of the heart muscle. This heart was just too broken to work anymore, and he was going to die sometime in the next very short few hours.

So this is part of the story, really. I got given this set of paper notes because we were just on the cusp of transition to electronic notes, this massive set of notes. And on the top it said volume three. Oh, but there's a tracer card, the very first page, that says this person's history in and out of hospital, different diagnoses. And I could see that. That he'd been in and out of hospital with increasing frequency for the last 18 months. So that's one of the things that tells us that this person's getting sicker and sicker. And each time we kind of sort them out enough to get them home, they don't manage at home for long enough before they're back in hospital again. So that's a red flag of get ready for the last phase of living, folks. And there were three men in this room with him, who I assumed were his sons, and a woman who was beside him. He was on a trolley. She was holding his hand, stroking his forehead, whispering in his ear. So we introduced ourselves. They confirmed that they were his sons. And I said, look, I can see that your dad's been really unwell and increasingly often in hospital over the last year or so. What did your dad say he would want to happen if he was ever so sick that he might die? And they. They looked at me as though I was speaking Martian. And then they said, oh, you know, we never talked about stuff like that. And then as I was kind of looking at the front of the notes, I realized this man is 97. This man is 97. And these boys who are his sons, who can't bear that their dad might be dying, they're in their 60s and.

Know, and they've never talked about it. And yet then one of them said, actually, dad did try to talk to me about it last year, and I just told him not to be so maudlin, so there's an opportunity missed. And then another one of the sons said, actually, dad wanted to talk to me about those attorney documents so that Mum wouldn't have to make all of the decisions on her own. And I Said, dad, why don't we do that to celebrate when you turn 100? So clearly this man had been trying to get his family to talk to him about, you know, he's 97. Even if he was hale and hearty, he's 97, but he's 97 with lots of bits that aren't working. And then his wife looked up from, you know, consoling her husband and said to these men, lads, you've got to let your dad go. Dad and I have been talking about this for decades. Each of us hoped we'd be the first one to die so we wouldn't be left without the other. But looks like he's won and, you know, it's time to let him go and we have to give him that dignity and that peace now. And so, you know, the decision was the right decision, of course, and we were able to get alongside that. And he was looked after in the emergency department because that was one of the things we were trying to stop people being transferred from the emergency department, dying on a corridor or in a.

So I kept this family in my head. I don't know why, but they just lived in my head and I'm thinking and thinking and thinking. There were so many red flags. There were so many indications that this man was in the last part of living. We can't keep having these conversations about end of life at the bedsides of dying people. We can't keep delegating that conversation to palliative care staff. By the time the palliative care team meet you, you should already have been thinking about. Of course, of course, this shouldn't be a medical conversation. This is a people conversation and somebody needs to do something about public understanding of dying. You know, this is a national, social, urgent thing. It's not about medicine. It's not about medical care and machines and intensive care units. It's about what matters most to people and what makes life worth living and where do I want to live the last part of my life and how prepared am I to put up with intrusive medical treatment to give me maybe a few extra days or hours, because it's important to me that I survive until a family event happens, or how much more would I prefer not to have all of that intrusion, even if I didn't live quite so long, to be in the place that matters to me, that makes my heart sing. So I just kept on thinking, you know, somebody. Somebody has to do something about the public understanding of dying. And I have to tell you, Melissa, it was kind of heart sync realization as it kind of dripped into my head that, you know, maybe I had enough stories and experience about the way people do live at the very end of their lives that I had a contribution to make to public understanding and be just.

Layers probably, isn't it? It's not comfortable to think about dying. It's not comfortable to think about your own death. It's possibly even more uncomfortable to think about the death of a person who matters to you, that their absence will change the way your life is. So your spouse, your parents, your children, your best friend, your very precious pet companion animal, all of those are really important bereavements. And somehow there's a kind of magical thinking that if I don't talk about it, maybe I can avoid it, or perhaps it's the other way around.

I might invite it into the room.

It's so hard, isn't it? And it's really hard to think in a balanced and reasoned way when you're in this kind of emotional storm. Which is why I think it's hardest for us to talk about the death of the people who are most precious to us. And you know, I've had these conversations with patients and their families, but I've had these conversations with my own dear friends and my own family. And it's completely different when you love the person. All of those little red flags about am I going to upset them? Am I going to make the extended family cross with me for talking about something that's going to be maybe A sad conversation, or is it going to sow misgivings in this person's mind? Do they think that I know something that they don't know? All of those things. So I think that it's nuanced and it's layered, but I also think, no. I know that when you take the lid off and start talking about dying, people are so relieved that it's been named. So although we're reluctant to start the conversation, it's a bit like taking a sticking plaster off a wound, you know, picking at the edges and then you do the rip.

And is it awkward? Is it difficult? Is it sad? Yes. Yes. It's all of those things. Is it loving? Is it important? Is it purposeful? Do you feel that you can explore things that you never realized were important? Do you feel so relieved afterwards? Yes, it's those things, too.

Oh. So those sad rooms. Those sad rooms have shocked people who suddenly are being asked, if your dad was so sick that he was dying, what would he want us to do now? And those. Those men, those boys looking at each other and thinking, we ducked this. We had the opportunity and we didn't take it. Or we could have created the opportunities and we didn't. We thought we were doing a kindness by not talking about something that made our dad sad or our mum sad. And it turns out they've quietly been chatting about it for decades, probably wanting.

That invitation, as I know you talk about. Yeah. So isn't it interesting to be alongside people who haven't had a chance to get their brains around it? And then I meet other families where they've been talking about it and there's nothing important left unsaid. And I know this is a thing that you talk about a lot, that people are left with regrets when they leave the preparations too late and that regretful outcome. We can't go back and time travel.

No, that's it. The conversations have been missed. Whereas if we love each other enough, and it is an act of love, I think we love each other enough to start these conversations early, long before there's a submission that, you know, the guy with the scythe and the hood is in the room. We can start to talk about not. Not dying, but living during the last part of life. Because my patients, when I was in palliative care practice, while they were labeled as dying, were getting up every day to live, a day to do things that mattered to them very much. Alive. Yeah. You know, they were living. And that's the really important part of this, isn't it? To think about what makes living worthwhile, even as our bodies are finding it harder and harder to do things. What's the most important thing for somebody? What brings them pleasure? What gives their life meaning? Who are their most important relationships? What is it about those relationships that they treasure? Those aren't sad conversations.

Well, so I've had a huge correspondence from people since I started sticking my head above the parapet and talking about dying in the last part of life in the public sphere. And the number of people who said, you know, how we wish we talked about it, how we wish that we'd asked, how we wish that we'd known so I've heard many people regret not having talked about it, but I've never met anybody who regretted having had the conversation. So I think maybe the first thing to say is, we will feel disinclined to start this conversation, but that disinclination shouldn't be the boss here, that we need to think about those people who feel glad that they had the conversations. We want to be them, and the only way to be them is to start the conversation. But some of the correspondence has been about, you know, I keep trying to talk to my parents about how they want to be looked after or whether or not they want to go into residential care or whatever the dilemma is. And they keep shutting me down. And somebody wrote to me and said if I could just give my dad a really good talking to, I'm sure we could sort all this out. And as I was reading the email, I could almost feel the kind of the way her dad would have been backing off because she loved him. She wanted to sort it, she wanted to make it better, but she was taking control. And I think one of the things we've got to really be aware of is letting the person keep their own control, as much as that's possible for them. So rather than going in to give somebody a really good talking to, maybe we need to turn it on its head and think about going in to give somebody a really good listening to. And the way that I have found the most useful is to remind people that our older relatives taught us to use a spoon, you know, changed our nappies, and suddenly to have us come in and start parenting them in an overbearing way. That's a role reversal that is painful for them. Whereas if we were to go into them and say, okay, dad, or okay, Auntie Mary, I have a worry that, you know, it's on my mind a lot, and I think maybe you could help me with it. You're now entering back into the relationship dynamic of you are a grown up who supports me. I may also be a grown up these days, but that's the dynamic of our relationship.

Yeah. In conversation. So I bring this request to you. You've given me powers of attorney. You've made me your substitute decision maker, whatever the jargon is, in different parts of the world. And that's a huge honor for me. But I do worry that when I get asked about some of the things that you might want if you're not well enough to tell us, I don't know enough yet to be sure. About what's the most important thing to you and what should be the priorities. So it would really help me if we could have a conversation about that sometime. Doesn't have to be now, so we're not pushing the agenda, but if we could do it sometime in the next couple of weeks, 10, 15 minutes, not a big, chunky, heavy conversation. And maybe we could do it when you come round to my house before the children come home from school, because it always cheers you up when you see the children when they come in from school. Or maybe we could have this conversation over a cup of tea and we'll have some really nice cakes that we can, you know, reward ourselves with afterwards. What's the treat? What's the exit strategy? So, please, may we have the conversation invitation? You say when control and what's the enticement? We will both promise ourselves because we recognize that this is a tender conversation, that it may be tricky. In fact, very often when you get down to it, it's less tricky than you're expecting.

The anticipation can be tricky. So can we anticipate a treat as well? And what I'm discovering is when we do that, when we offer and invite and suggest a time frame like the next couple of weeks, rather than just, you know, anytime in the next 10 years when you feel like it, very easy to avoid. And then we can nudge simply by saying, you know that conversation I'm hoping to have with you, I'm still worrying about things. I really appreciate your help with it.

Well, I think it varies. And the thing, if you think about it, like planting a seed. Yeah. And so you've given them the idea and it might be that they go away thinking, oh, thank goodness, I thought nobody was ever going to bring it up. I'm definitely going to phone her tomorrow and we'll get this sorted. Or they might think, why is she wanting to talk to me about that? I'm not sure I want to talk about those things. But now the seed's been planted, then over the next few days, there will be news items, newspaper items, plots in soap operas. Suddenly the frailty of being human and the importance of planning ahead. Now that the seed has been planted, it pops up everywhere because it's there all the time anyway, but we ignore it and so gradually that little seed grows into. Oh, you're still going on about that? Yeah. Okay, right. How about next week then? And really to set a timer and say, look, if it gets too much at any point, you say, stop, but I'm setting a timer on my phone and we're not going to do this for more than 15 minutes. Now when the timer goes off at 15 minutes, you might find the person says, oh, thank goodness, that was horrible. Never do that to me again. But more often you'll now be in a conversation that feels safe and respectful and they'll say, Gosh, is that 15 minutes already? Well, we're in the middle of this now, won't we turn that off? Let's keep talking.

Well, I think that one of the things is that we're not saying the words for the first time and that makes it slightly less difficult. But also sometimes we're going to get it wrong. But when we talk about it the next time we can talk about, do you know what? Last time I promised you that I wouldn't go such and such a place and then I put my big feet in it, didn't I? And I said that, oh, I felt so terrible since I did that to you. I'm really sorry. And by now they've processed it too and they're saying, yeah, well that was a bit awkward, wasn't it? But I've been thinking about it too, and we do really need to talk about it, don't we? So it's like the waves coming up the beach. I think we shouldn't see it as single sitting and we'll get all of the things that we want to talk about.

Okay, well, I think I would assume first of all that we were relatives or very close friends.

And that's why we'd be having that conversation. So I think I would would feel able to say to a close relative or a dear friend, whoa, that's really upset you, hasn't it? I'm so, so sorry. But we feel strongest about things that really matter, don't we? So I can see today isn't the right day. Let's just leave it. But when you're ready, I'm ready to listen. I don't want to push it. I'm just happy to listen to what matters most to you. So I don't do it wrong when it really matters and just leave it. Because very often anger is our kind of outward performance of feeling frightened. Of course.

So if we push, we're not pushing against anger. We're pushing against fear. And that's unkind. Whereas if we actually acknowledge it, you know, I could see this is really hard. I'm sorry that it's so upsetting for you. I don't want to let you down when the crunch comes. So I need to know when you're ready, but it's not today, and that's fine. Thanks for listening space. Yeah.

Well, I think that one of the things I've learned from training medical students, where we video them talking to actual volunteer patients, people are so generous, and they come up and they help us to train the medical students. And the student will be given a task of breaking some unwelcome news or talking about something that's maybe a tricky topic like sexually transmitted diseases or breaking unwelcome news about a difficult diagnosis. Something like that. And they come out of the video session, they say, oh, that's silence. When I didn't know what to say. And it just went on for hours. It was terrible. I better failed this assignment. You know, it was awful. And then they debrief with the patient, and the patient says, what? Silence. Okay. So now we watch the video and we see the silence that went on for a thousand years, which lasted about, you know, six seconds maybe. Sometimes they've been really able to hold the sentence, the silence, and it's gone on for 10 or even an astonishing 15 seconds. That person, that patient, has not noticed the silence because they were so busy in that place, thinking, comparing, making their mind up, changing their mind, wondering about this, remembering about that, bringing stuff together from their past, from the present, the things they're worrying about or wondering about for the future, that silence is incredibly busy. For them, it's processing time, and if we interrupt it, they don't do the processing that supports the conversation that we're trying to have with them. So my advice when I'm teaching people about communication skills is, first of all, two ears, one mouth. Respect that ratio. Listen more than you speak. When you've listened, check back that what you thought you heard the person say is what they thought they meant. So if I've understood you right, I think what you just told me is. And then summarize it. Because if we offer it back and they say, oh, no, no, that isn't what I meant, well, thank goodness I checked. But if it is what they meant, then what they tell us in feedback is, I felt really listened to because the person kept telling me what they'd heard, and I knew that they were paying attention and they were getting me. So silence as processing time, silence as them thinking, but also silence for you not to feel awkward. Because we do call it awkward silence, don't we? Call it a thoughtful silence and do your thinking in it as well. What else might we need to talk about? What else might I need to ask about? What are the other things I'm curious about, given what they've said to me so far? Because actually, this isn't a telling conversation. This is an asking conversation. And if you're being asked questions, you remain in charge of what you say and how you say it. So nobody's taking your power away. And if you feel that you've retained your control, you feel you've retained the power I haven't felt undermined and steamrollers into talking about stuff you didn't want to talk about, you're much less likely to resist the next invitation from that person who comes back a few weeks later to say, uncle Alfie, I really enjoyed that conversation I had with you, and I learned so much about you and what matters to you, and I feel so much better now about. If the doctors ask me what matters most so that they can, you know, tailor treatments to what matters most to you, I'm much more confident. But there was something that I didn't ask you that I wish I had, or there was something that you said said that I've been thinking about, and I realize I need to know a bit more about it. Is it okay for me to ask you about that now? And because you didn't steamroll at him last time, because you didn't take the power away last time, he's far more likely to say, okay, what is it? Even if he rolls his eyes.

I also think there are some really good ways we can ask questions that again, give the person power at the same time as giving us the information we might need if we're to be their advocates. What are the few examples? So some things like, okay, so I wonder. So I wonder is always a great start. Because it's not, I'm telling you, I wonder. I wonder how much you've already thought about this. And so somebody said, I've never thought about it. And I wish we weren't thinking about it now. That's a different tone of conversation from, well, do you know what? Actually, I've been thinking about this for quite a long time. You know that woman in the emergency department? Boys, your dad and I have been talking about this for decades. Yeah. So I wonder how much you've already thought about this. I wonder whether you've got particular things that when you think about towards the end of your life, would be the things that matter most to you, that you want to make sure that I and the rest of us get right for you. What are the things that you really hope will happen? How do you really hope you'll be able to live? What will that be like? What will be the good things about that for you? So these are all questions about what will be good, what will be okay, what will matter? And if we couldn't do it quite like that, then what would be the things that we should bear in mind so it's as close as possible to what you want? I also ask patients, and I haven't tried this in my family, but I guess it will work in families as well, that most people I have conversations like this with have a kind of best hope and a worst dread. And I'd be really interested to know what your worst dread is and what your best hope is so that when the time comes that we're trying to sort things out, we can help it to be the least like your worst dread and the closest we can keep.

It's a really great way of helping people to think about their best hope. So I ask about worst dreads first, because that's the kind of downbeat bit of the conversation. And then remind them that I wanted also to know about your best hopes because, you know, I can hear how that thing that you're worrying about, I can understand why that would be your worst Dread. Okay, let's think about your best hope. Let's think about what's the direction we're going to try to move towards for you and to hold that always in front of us, that this is the thing that matters, this is your best hope. This is the most important thing in your life. And very often when you talk to people about that, their best hopes are not about themselves. It's really interesting. It's about how my family will be and how I'll be remembered and whether or not it's going to be a burden for people and how I can cause the least distress to everybody and be the most supportive to them, even though I'm the sick person.

So it's fascinating how much our relationships come into these conversations. So it's not a practical list of, well, dad, how do you feel about living in a nursing home? Yeah, it's much more, you know, if you can't live in this house anymore, despite all the help we want to give you, what do you think the options could be? What have you already thought about and how would you like it to be? What's the least worst option? What's the worst, worst option?

Many times you've seen that.

Oh, such a fantastic question. So I have to start by telling you that the shorthand for that relative from afar who's not on the same page as everybody else in the UK is the daughter from Australia.

It's the daughter from Australia, it's the daughter from Australia. And the thing is, because she's so far away, we don't want to worry her because it's hard, it's sad. We love her and so she's not abreast of all of these conversations. So the conversation has been had with a doctor that as Mum's health deteriorates, for example, cardiopulmonary resuscitation, CPR won't be an appropriate treatment for her anymore. She's going to be protected by having a Do not attempt CPR certificate in her notes and she will carry it with her and that she doesn't want to be admitted to hospital. But, you know, if she absolutely had to, she'd agree, but not to go to an intensive care unit. No longer fit enough to get off a ventilator if she were to be put on a ventilator. So we won't start. So we're starting to put kind of ceilings of intervention in place in her care plan parameters.

Now they're not ceilings of care. We never stop caring. And in fact, I often think that this very last phase of life sometimes is the most intensively caring that we do. But what we're not doing is intervening with difficult, burdensome treatments. So we're minimizing distress, we're maximizing autonomy and comfort, but we're also trying to help the person to be in the place where they want to be and to be with the person, the people they want to be with. And one of the people they're going to want to be with is that daughter from Australia. So she arrives and she finds that Mum is at home and actually she's so sick. Surely she should be in hospital. Surely she should be in an intensive care unit. Yes. And she hasn't been part of this decision making process that's allowed the rest of the family to understand what's going on. So my appeal to our listeners is that we think when we're having these conversations about not just the people who were in the room and party to the conversations, but the people who need to understand not just the decisions that have been made, but the reasons, the reasoning behind those being the decisions that we reached so they're not completely poleaxed and confused by not enough treatment happening. For example, when they arrive from afar and think, you know, you obviously haven't noticed how sick Mum is. Maybe I'm seeing it more easily because I don't see her very often. Maybe it's crept up on you because you're seeing her more often. These are all things that I've heard at bedsides from families where there are local family and family from further away. And it's true, in fact, that sometimes it is family from further away who notice a difference.

So it's really important that we remember to be mutually responsible to each other and for each other's mutual understanding. Which again means who's the kind of information holder in a complicated family? It's really helpful if there's a person who is the holder of all of the information. And what's the information cascade mechanism look like? So I come from quite a big family, and if one of us had to make all the phone calls, it would take them days. Whereas if we have a cascade tree where I and my siblings will each inform our kids, who are the grandchildren of our elderly parents, for example, everybody is transmitting information, but we've got an agreed script. This is the information that all the grandchildren need to be given. And then some of those grandchildren work in caring professions, in nursing, in medicine. They might have some extra questions to come back with. That's fine, let's answer those. But let's start off by giving everybody the flavor of what everybody needs to know right now.

Yeah. There is a recognizable bodily process that is our bodies getting ready to die. And we're familiar with other processes, aren't we? So we think about pregnancy is a recognizable process. Labor is a recognizable process. Digestion is a recognizable process. Dying is just another one of those. So one of the things that we notice towards the very end of somebody's life, and it's interesting that it doesn't really matter what the illness or illnesses are, or whether it's even just extreme old age. The thing that we notice is weariness, exhaustion, and increased need for sleep. And sleep is the kind of battery recharge for that exhaustion. So I think it's important we say here that this is not your afternoon nap brigade, because I'm a fan of the afternoon nap myself. So this kind of sleeping is not a kind of planned nap. It's the person who just cannot stay awake despite wanting to, and who falls asleep and has another snooze. And then when they wake up, they've got a bit more energy for a while. And then it's almost like you can watch the dial fading on their energy. And again, they need another sleep. And then they've got a bit of an energy recharge for a while. And as time goes by, what we find is that people are sleeping more and more and for longer and longer and they're awake for shorter and shorter times, and that's normal and that's okay. And we have to plan the things that are important for communication or for pleasure for when they're awake. And it's a bit unpredictable and so that can be a little bit hard sometimes. The other thing that can happen, and it's really important that families understand it so that they don't feel bewildered by it and frightened by it, is that there can be overlaps between the periods of being asleep and being awake where the person isn't properly asleep, but they're not properly awake either. And it's a kind of awake dreaming state that we've all had. Boy, I've never really thought about it. You know, when you've been really, really deeply asleep and you've set an alarm and the alarm goes off and you're in a deep, deep sleep and in your dream the dream starts to include a noise. So there's the burglar alarm goes off, or there's a fire alarm ringing somewhere. And in the dream you've got to solve whatever this thing is. And then gradually as you become more and more awake, you realize that, oh, no, it's not a fire alarm, it's not a burglar alarm, it's a noise that's in the real world, it's not in the dream. Oh, it's my alarm. And now I can turn the alarm off. But you've had sometimes many seconds, sometimes only a few seconds of being in that sleep wake state where things from your subconscious and things from the real world have got muddled up with each other. And we call that state delirium. And it can be caused by having a very high temperature. It can be caused by chemical imbalances in the blood, which are not uncommon towards the very end of life. It can be caused by some medicines, but very often it can just be caused by this dipping in and out of sleep and not quite fully waking in between times. Now, if we see that happening and we meet it by smiling and by talking in a gentle voice, then the not quite asleep, not quite awake person reads the body language of the warm tone of voice and the smile. And as things are okay and I'm safe and you look like everything's okay with you, so things around here must be okay. Yeah. Whereas if you start to say, mum, Mum, no, there's definitely no spiders in the room, Mum. What? Do you stop being so silly? Oh, no, no, no. They hear the agitation, they hear the contradiction between your experience and their experience. They can't make sense of it. And so what was just a little bit, bit weird now becomes frightening and disappointing for everybody.

That's absolutely right. And there's great research from Canada that shows that even deeply unconscious people approaching death, their brains still respond to sound. Now, we don't know whether they understand the voices and the words that are being spoken in the room.

When you think about midwife helping a pregnant person to be ready for delivery, for labour, they have lessons for months, the weeks before, so that when you're having delivery day, you're not learning stuff for the first time.

Yeah.

Well, you've heard it all before. Your birth partner has heard it all before. You know that there's a process. You know that there might need to be a plan B and a plan C. But we're signing up for plan A to start.

Yeah. So here, at the very end of life, beyond that kind of sleeping waking period, most people lapse into full unconsciousness. So not asleep now, if you're well enough to feel tired enough to need a sleep, you're well enough to wake up again afterwards. Because I meet people who've been told you won't be awake when you're dying, so now they're frightened to go to sleep. Okay. It's not the same as going to sleep. Unconsciousness comes on us without us noticing. Unconscious, we're not conscious of it. And the unconscious brain, as you said, can still hear. And the only other thing it's still doing is regulating breathing. And so we breathe in an unusual way when we're deeply unconscious. And because most of us never see this, because if you're so sick or you're so injured in an accident, for example, that you're deeply unconscious, you'll usually be in intensive care with a tube in your airway, with a machine breathing for you. So the end of life is the only time we see this breathing. And it's cycles of deep breaths that gradually get more and more shallow and then back to the beginning again. And cycles of fast breathing that gradually gets slower and slower and slower and then with pauses. And so you can imagine that as these cycles pass each other, there can be periods where the breathing is fast, but it's shallow. So it looks snatched, it looks like it's hard work. It looks like the person might be really working hard to breathe. And if you've never seen it before, you might think this person you love is struggling and is very breathless. In fact, they're deeply unconscious. Or it could be slow breathing, breathing out through a throat that you can't feel anymore, so you don't know that your breath is coming out through your voice box and it makes a noise. Or if you've never heard that before, why would you think this person wasn't groaning or sighing or trying to speak? So again, the midwives of Dying need to help prepare people to know that these are the kind of strange breathing patterns and sounds that they'll hear from a person who's deeply, safely unconscious. They're doing the normal process of dying. They're doing it absolutely beautifully. Their body knows what to do. This is safe. This is okay. It's sad because it's goodbye. But this person is not suffering. And usually during one of the slow phases, often when it's shallow and slow, there'll be a breath out that doesn't have another breath in after it turns out that was the last breath. Well, you never see a last breath like that in Hollywood. People wake up and they say something important that changes the whole plot of the movie. In real life, that isn't what happens. It's very, very gentle. To the extent that very often those of us who work in palliative care can walk into a room where a family's been sitting all around in vigil around their person who's dying. And you look at the bed and you think that person has stopped breathing. And the family haven't noticed yet because the kind of shuddering Hollywood moment head tilt thing that they're waiting for, it was a gentle death. So if we know that these sounds tell us that the brain is gradually turning itself off, if we know that that means this person is deeply unconscious and completely safe, we can console each other with that understanding. One of the first things that happened after I published my first book with the end in mind, which describes this dying process in some detail. And I felt guilty, really, to have told patients stories because I didn't have their permission. And of course they were dead, so I couldn't get their permission. But. But I wanted to tell the truth by telling real stories so that people could understand it and kind of observe it with me. So I'm still feeling kind of anxious that I've broken confidence when I got a message through Facebook. Now, in those days, I just had a mum's Facebook account, which is the way that I knew my teenagers weren't dead, you know, that's all I used it for. And I didn't know that there was this way of requesting to send a message to a person that you weren't otherwise contacted with. So this person sent me a message request and I clicked it and this message came up that said, my mum died eight years ago. I sat with her as she was dying. Her breathing made the most terrible noises. I've never heard anything like it in my life. And I couldn't get the noises out of my head afterwards. And after two years, my GP diagnosed post traumatic stress disorder and sent me for psychotherapy. And I've been having psychotherapy for five years. And yesterday I read your story in which your boss explained the process of dying to a patient in your hospice. And this is one of the early stories in the book. And I recognized what had happened to my mum and I understood for the first time that she'd been completely safe, completely unconscious, and all the suffering in that room was mine. And last night I slept through the night for the first time in eight years. I ought to be able to tell this story without crying by now, but that was the moment in which I thought, you know what? None of those people whose stories I've told would resent this. This was the absolute purpose of writing the book. This is the absolute purpose of campaigning and talking about what happens in this process of dying. Because it's so consoling to understand it and observe it in real time and understand what those breathings changes are, or in our bereavement, to look back and say, oh, that's what happened, that's why it was like that. And that was the first message. But that must have been just before Christmas in 2017. And since then, you know, maybe thousands of messages now all saying, this makes sense to me, this is what I saw. Why didn't anybody explain to me? And so we need to be humans, not healthcare professionals, human beings who understand dying, who can remind each other of the process, who can say, yeah, this is normal, this is okay, this is safe. And who also therefore can say, oh, that's not normal, that's not okay. That looks uncomfortable. This process should not be uncomfortable. That needs sorting out so that people do get good symptom management right up to their last breath.

Thank you, Melissa.