
In this episode, Kathryn Mannix shares the wisdom she has gained as a palliative care expert for living while navigating the journey towards death. She explains how we can approach death with greater understanding and less fear and offers insights that challenge our common perceptions about dying.
Key Takeaways:
- The importance of having open conversations about death before it’s imminent
- How the process of dying is often more peaceful than we imagine
- Why planning for end-of-life care should focus on what matters most to the individual
- The predictable patterns of dying and how understanding them can bring comfort
- Ways to support loved ones through their final days
Dr Kathryn Mannix spent her medical career working with people who have incurable, advanced illnesses. Starting in cancer care and changing career to become a pioneer of the new discipline of palliative medicine, she has worked as a palliative care consultant in teams in hospices, hospitals and in patients’ own homes, optimizing quality of life even as death is approaching. She is passionate about public education, and having qualified as a Cognitive Behaviour Therapist in 1993, she started the UK’s (possibly the world’s) first CBT clinic exclusively for palliative care patients, and devised ‘CBT First Aid’ training to enable palliative care colleagues to add new skills to their repertoire for helping patients.
Using her experience as a physician, psychotherapist, trainer and service lead, Kathryn presents stories that illustrate how we can better understand and prepare for death (our own or somebody else’s) in her bestseller ‘With The End In Mind,’ and then leads us through the art of Tender Conversations in her latest book, ‘Listen.’
Connect with Kathryn Mannix: Website | Instagram | X | Facebook
If you enjoyed this conversation with Kathryn Mannix, check out these other episodes:
How to Face Mortality and Live an Authentic Life with Alua Arthur
How to Navigate the Complexities of Caregiving with Kathy Fagan
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Episode Transcript:
Eric Zimmer 01:57
Hi, Kathryn. Welcome to the show.
Kathryn Mannix 02:00
Eric. Hi. Thanks for inviting me.
Eric Zimmer 02:02
I’m really excited to talk to you today. We’re going to be talking about a subject that is heavier than most, but not maybe as heavy as we make it out to be. I’m hoping as we go through this conversation, because we’re going to be talking about death and we’re going to be discussing your book, which is called with the end in mind. But before we do that, we’ll start like we always do with the parable. In the parable, there’s a grandparent who’s talking with their grandchild, and they say, in life, there are two wolves inside of us that are always at battle. One is a good wolf, which represents things like kindness and bravery and love, and the other is a bad wolf, which represents things like greed and hatred and fear, and the grandchild stops. They think about it for a second. They look up at their grandparent and they say, Well, which one wins? And the grandparent says, the one you feed. So I’d like to start off by asking you what that parable means to you in your life and in the work that you do. I
Kathryn Mannix 02:59
love this parable, and I’m struck by it often in my work. So in my life, I think it’s easy for us to catch ourselves out feeding the needier Wolf, and often that’s the bad wolf. That’s the wolf that comes from pesters. So sometimes it’s really important to notice that this thing that I’m doing to make myself feel better is actually feeding my fear. Is feeding my worry and concern, and it’s moving me away from being confident that taking courage and feeling the fear and doing it anyway, will, in the end, prevail, and I think if we do that cycle often enough, I hope what we do is we start to wear the footsteps past the bad world store and towards courage and towards healing and moments and holding life in a way that’s trusting, that’s
Eric Zimmer 04:00
beautiful. It makes me think of the idea of avoidance, right? When you avoid what you fear, you strengthen it. You’re subtly sending the message to yourself. I can’t handle this.
Kathryn Mannix 04:12
Yeah, right. And so in my work, of course, I meet lots of people who are maintaining their peace of mind about the fact that their death is approaching by using the really, really helpful, or is helpful technique of complete denial. So if you don’t believe the thing is true, you don’t have to feel any of the difficult emotions. And it’s almost a point of equipoise, I suppose, between the wolves, because it’s so easy to slip sideways into fear and despair in one direction, and yet, if you’re able to open the little denial just enough to say if there were little bit of this that I could deal with today, then you’re stepping up in courage and you. Are stepping out, perhaps, towards the arms of other people who are prepared to help, to hold you and to help you to face the difficult place. And so maybe one of the other things to think about with the metaphorical rules is that wolves work impacts and that we live in community, and the people who are facing years of their lives, sometimes tragically, are alone, but that’s really ran mostly. There’s a small group to an army of well wishers and supporters who confronted by the person’s denial don’t know how to be by enabling them to start a conversation that requires courage but requires tenderness, and I’ve written separately about that. Then we move them into a place where the pack is surrounding the wolf and moving them in the direction of their good wolf, their courage, they’re facing their fear. They’re having more information, because information, in the end, is the light, isn’t it, that shines into the dark place and says, Okay, that’s what it looks like, right? Okay, how do we do this?
Eric Zimmer 06:12
So you have a wonderful story in the book about denial, but I don’t want to go there just yet. I kind of want to start at the beginning a little bit. You say that we all bring our own ideas and expectations with us in any encounter with the big questions, whether that’s birth, death, love, loss or transformation, we frame things through the lens that we see it. We see it mirrored to us, and we think that’s what it’s like, and you say that death has sort of fallen out of the big questions, right? You said it’s become increasingly taboo. Yeah, I
Kathryn Mannix 06:48
think this is really interesting, because it’s not that we don’t think about it, it’s that we didn’t talk about it. And the taboo is almost the thought police that if there were a third person with us now, we might now be worrying that they might be uncomfortable if we pursue this conversation, or we might be watching really carefully in case this is going to be triggering for them. So often it’s a kindness that we’re being careful with each other, and sometimes it’s an overridingness. So I remember our colleague coming back to work after the death of her father, and I bumped into her in the little hospital kitchen where we used to go to sneak a little tea break in between really busy clinics or whatever. And it was tiny. You could only fit three people in at a time when we had to move very carefully around each other to get to the hot water boiler or the cupboard at the mugs in or whatever. So I’m welcoming my colleague back and saying I was really, really sorry to hear that your dad died, and it’s great to have you back at work. And you know we’re here if you want backup, you tell us, don’t let us push it. And she said, thanks. And she left her kitchen area, and there was a third colleague hovering at the edge, somebody who worked in a slightly different discipline from us. And as our bereaved colleague left, she came into the kitchen, she hissed me, I cannot believe you said the word dead to her when her father has just died, and I’m thinking, hang on, it’s the thought police here. My bereaved colleague and I have just had a perfectly okay conversation. We’ve acknowledged her loss. We’ve used a word about the loss. I didn’t say he passed or passed away. I acknowledged that he died. She acknowledged receipted the message that she can call on us if she wants support, but we’re not going to, you know, crowd her. We’re done here. But a different person is now policing my language, a person who wasn’t engaged in that conversation. And I think we see this all the time, and we see it also in the media, so on the news, if you look out for it, in print media, in TV news, very often the announcement that somebody has passed that somebody has passed away. Now, in certain parts of society, there’s a deeper transcendental and spiritual meaning to the language of passing of passing away and passing on. But largely, we’ve grabbed onto that language to be euphemistic and gentler, but it also avoids using the language of the end of life, of the approach of death, of the doing the dying, of the being dead, of enduring, being bereaved. And so we lonely, find people by not having the courage to mention the most obvious, most difficult thing that they’re currently dealing with, and it’s partly because with the UK, with the language, and it’s partly because we powerful eyes dying itself. The understood, it recognized it, saw it frequently three generations. Years ago, I’m going to say now it’s something that we don’t see. It’s being medicalized, as you can, kidnapped into hospital, into escalating and increasingly futile medical care. So I don’t see ordinary dying happening with any regularity. We certainly don’t see it often enough to recognize that it’s a pattern. To recognize that it is recognizable that the patterns of paces are similar from person to person, that they can pace our way through it. They can realize what’s happening to the person who accompany you. Good symptom control, which isn’t rocket science, by the way, with good symptom control. The process of dying can be incredibly peaceful and comfortable enough to be bearable. And frankly, you can’t always say that about the process of giving birth, which often is, you know, it’s parallel in having recognized more phases than stages. And we can, you know, name it and accompany it. But giving birth, unless you really well, anesthetize is not a comfortable process, and dying with proper symptom management is not an uncomfortable process.
Eric Zimmer 11:12
Yeah, it goes back to what I said earlier about avoidance, right? If we avoid a topic, we can’t say death, we empower it and make it harder to say it. You also make the point that we end up saying things like, you know, you mentioned that they’ve passed, or you’ve lost someone, instead of saying died or dead, and that we’ve started to talk about the dying process in terms of warfare, saying somebody lost their battle, right? Which is a defeatist way of talking about this. Say a little bit more about that. I think
Kathryn Mannix 11:47
that’s a really interesting thing. And I think it might be Ronald Reagan who was culpable in the first place saying it, you know, declaring a war on cancer. And it was about cancer, and it’s largely cancer that the battle metaphor is used about and for some people who are having treatment for cancer, battle actually is quite helpful. So we mustn’t throw the baby out with the baffle water here, right? But for a lot of people, they are not battling cancer. They are living with cancer. Their life is not cancer. They’ve got some cancer in their body. It’s affecting their life, but it becomes everything about them, for some people in their key relationships. And the truth is that we will all die. And I know you interview that I really enjoyed listening to. You interview them, the wonderful ala wa Arthur talking about exactly this, that the fact that we’re going to die is given. We can pretend for most of our lives, and we do pretend for most of our lives, that it isn’t so. But at the end of our lives, we will not have lost in battle. We will simply have finished our lives, and we have to die something. It’s interesting that the battle metaphor isn’t used so much for the other things we die from. So communist cause of death in older people now in in high level income countries, in older people with dementia, right? Okay, and we don’t talk about losing your battle with dementia or losing your battle with heart disease, and it’s offensive to dying people to be criticized for not fighting hard enough to win the battle for what? For immortality. Did anybody win that battle yet? So we need to be more cognizant that there is language that is helpful and there’s language that is hurtful, and a really good rule of thumb is to ask people how they like to talk about it. They’ll look a little bit surprised to be asked, but also they’ll appreciate it.
Eric Zimmer 13:53
And you mentioned that many times the elderly, the people who are closer to death, want to talk about death. They want to talk about their preparations. They want to get their affairs in order. But very often, the younger people, quite often their children, don’t they say, No, Oh, Mom, you’re fine. You’re fine, mom, or you know, that’s a long time down the road. Dad, yeah, we’ll talk about that later. And you say that you’ve seen again and again people see death in a sense, almost sneak up on them, meaning they thought they had time to do that. They thought they had time to have the meaningful conversations. They thought that there was more they would be able to do, and once the person starts entering a dying window, they are less. I don’t know if this is how you would say it less, here with us, there’s
Kathryn Mannix 14:43
an interesting thing. So the trajectory of dying is it’s slightly different in different conditions, but for most of us in our lives, there’s a period in our lives when we’re well and we’re healthy, and our life expectancy is measurable in decades. And even though I am now in my. Haven’t Bucha. You know, I still go out running slower. I don’t go as far. My times get worse, gradually, gradually. But it’s showing me that my body is slowing down at a rate of decade to decade, rather than year to year. There’ll come a phase, perhaps when the illness or the illnesses that will eventually end our life declare themselves, when we start to notice that the trouble with my heart, all my lungs, or the cancer I’ve been having treatment for, or whatever it is, is starting to limit me now, and I can notice the difference from one year to the next. And so now we’re measuring life expectancy, probably still in years, but not probably in decades. And as time goes by, that kind of failure of energy and difficulty doing things is noticeable within one year. It’s a noticeable month by month. We’re measuring now in months, perhaps in a month to make a year or so, and gradually that trajectory changes. And always, people think there’s more time than there is. So given that we’re all mortal, I think it’s really, really helpful to start talking about dying long before we need to, because our families generally are not upset that our death is imminent if we start the conversation earlier, so my family know what kind of funeral I’d like and what kind of language I’d like, and much more importantly than my funeral preferences, my living while I’m Dying, preferences, where and who the important people are, and what are the important things to have completed by then, what the noises around me should be. Some people may end up my playlists. I’m a fan of thoughtful silence. A lot of times I don’t want nursing staff that I don’t know to play their radio tunes at me while I’m in that important time of my life, you know? So these are the sorts of things for people to start to think about when they gather for a family gathering, and there’s a really lovely game. And I wish I could remember, and if I can remember us, then it’s even the show notes I came for somebody in the USA, which was a Thanksgiving dinner, to ask the people around the table three questions, and it was their desert island probably not. Doesn’t translate across the Atlantic. We have a show called Desert Island Discs, the
Eric Zimmer 17:31
seven. No, it does. Yeah, it’s an American
Kathryn Mannix 17:34
desert desert island, right? So their desert island books or discs, or whatever, they’re absolutely favorite dinner and their favorite pizza topping. Yeah, and everybody, this is the gathering of the people who are closest to us in families. They get each other’s answers, and they never get each other’s answers right. And then you turn the questions over, and the questions are those ends of my care questions? And you think, if people don’t even know each other’s paper at Pizza toppings, how are they possibly going to guess the answers to these questions? And so it’s an invitation when the family is gathered. And because it’s a little bit funny that we’ve all got this question so wrong, to just maybe take two or three of those questions and have a think about the answers, not because we need to, but because we actually, right now, thank goodness don’t need to, but it’s a gift to each other that we have. It’s interesting,
Eric Zimmer 18:33
because when I think about death, the question to me would be, well, you want to be buried, you want to be cremated. You want, and I usually say like I could care less. However, you make the point that there’s a lot of time up towards death that I may care a lot about. So for example, in my case, since I have misophonia, aversion to sounds, no one should be allowed to chew in the room where I’m dying. Eat your food in the hallway, I can’t move, and I’m just, you know, I’m tormented by by sounds like that. You say in the book that there’s usually little to fear about death and much to prepare for.
Kathryn Mannix 19:15
I think that we fear it so much that we don’t start the preparations. And it’s absolutely the other way around that, actually. So first of all, the intention of the book is to de catastrophize dying and re familiarize people with its predictable and relatively gentle processes. And then to start to think about, well, if that’s what’s going to happen. Now you know that it’s likely to be like that. Let’s think about where might that be able to happen. Doesn’t have to happen in the hospital. It doesn’t have to happen in an intensive care unit. You might no longer be able to manage the stairs in your home, but you might really love snuggling down in your big sofa. Or you might envisage that actually, when I get to the end of my life, I’m going to go and be careful. I’m. My daughter, really, have you discussed that with your daughter? Because the last time I looked your daughter had three dogs, two cats and five children under the age of 10. How’s that going to work for you? Or where’s the bathroom in your daughter’s house relative to the bedroom that you would use? Which of the kids won’t be able to use their own bedroom for the duration of the time that you’re living in their home? Yeah, and it’s just meant to stop people from making assumptions and instead to help us conversations. And if you know the process, then you can work out, okay, how much of that process could I actually live, just in the place that I normally enjoy living, have control over my life? What extra help might I need? Where could I get that help? Is it going to be from friends and Vegas? Can I afford come from services I hate? From what will the state privilege for me? Lots and lots of things to think about. And then that particular thing that you’ve said about the soundscape around us, or about the way we touch, or the way that we’re held, there are people for whom touch is really triggering, that they’ve had experiences in their lives that have been terrible for them, and they’ve perhaps spent a lifetime mending as best they can from that other people they have the ability to understand that and how they are to be touched, people who obviously this is an absolutely Great example of something you would never guess from having conversations with a person, although, if you’ve lived with them for long enough, though,
Eric Zimmer 21:26
people in my life know your guys really know Yeah, and so do hundreds of 1000s of podcast listeners. But
Kathryn Mannix 21:33
you see, because I didn’t know I was drinking tea with the microphone open, that’s fine, but it didn’t occur to me, and it would have occurred to me had I known so these things aren’t they? Of thinking about, what do I need to know about this person is that there’s a psychiatrist in Winnipeg in Canada, Harvey chocchinov, internationally famous for his work in palliative and ends of my care for Dignity Therapy, and he has this question, what do I need to know about you as a person? Can or does that I can give you the very best care that matches your needs? And that’s the conversation in which each of us would discuss some things that would be very, very similar for a person to person. And then those individual things with it. Oh, right, okay. I was gonna unwrap my cheese sandwich and sit next to Eric so that he didn’t feel lonely while he was waiting to go in for that scan. That’s not a good plan. I’m not going to do that now. Or, you know, for a Kathryn lying in that room and it’s completely silence like the grave. I must be terrified there. I’m going to put some cheerful music on know, what do You need? Not? What do I think you need? You?
Eric Zimmer 23:00
Hair. One of the things that I think is hard about this planning is it seems relatively straightforward to decide what you want to happen once you die. My partner, Jenny’s mother passed coming up on two years now, amazingly, from Alzheimer’s, and we took care of her for about six years, and one of the kindest things she did for us was when she was diagnosed, she took me to the funeral home, and we did all of it. It was just done. You know, we just said to the funeral home, come get her and do what she said. You know, we had like, two decisions to make. So that seems straightforward to me. What does not seem straightforward. And I’ve got an aging mother, 81 years old. And what makes the planning hard, I think, is I don’t know what’s going to happen. I understand what’s going to happen in the last weeks of her life. I understand that we’ve had Barbara Carnes on who does the sort of thing you do here. I think she’s here in the US, and so I recognize the patterns of the dying process. It’s that time before that. Is she going to have a stroke and need to be in a nursing care? Is she going to get dementia and that’s going to be a different thing? Is she going to just, I don’t know what it means to die of old age when they say that. I’m like, What does that even mean? But that’s the planning that’s hard.
Kathryn Mannix 24:21
You’re absolutely right. And I think that if we think about planning as a list with tick boxes, the list would be open, it wouldn’t it. So I think we can turn the conversation a different way. We can say, at this stage in all of our lives, what matters most to us? Where do we get our joy? What brings us peace of mind? What are the conditions that help us to feel satisfied and calm and at peace during and by the end goal each day, what matters most? And we can have those conversations. And actually, there’s delightful conversations to have, because they’re about the things that bring us joy. They’re often about the people. Whom we love, whom we’re thrilled to see or to hear, their voices if they’re far away. And that means that in the future, there’s some kind of medical event that makes it difficult for the person there to express their wishes, like they have a stroke. For example, instead of, I’m your mother’s doctor and she’s had a stroke, heaven, COVID, instead of saying to you, what did your mother say she would want to do about sheep feeding, having a ventilator, living in a rehabilitation facility? Yeah, yeah, yeah, I can say she explain to me what math isn’t seen, because then I can talk with you about all the treatment options we have, and what we can do is we can wrap the treatment options that are most likely to match what matters most to her. We can wrap those around the care that we give her. So it might be, for example, I have I looked after a lovely, very elderly lady with terrible respiratory disease. It was on oxygen at home, and part of my work was to be a cognitive behavior therapist. And originally, I’d seen her because she used to get para systems of panic when she lost her breath. She always thought this was the time going to die, and she learned to use cognitive therapy skills to manage her panic. She was gorgeous, and I loved her, and she came to my clinic one day, and she always had this attitude that doesn’t really matter how long I live now and I’m aged, it’s the quality of my living what matters most to me. And that’s an important question. Is it quality or is it length of time? What would you be prepared to put up with, to eke out extra time compared with what you wouldn’t be prepared to put up with, because it’s the quality of living the most. And she said, you know, what a wonderful thing is going to happen. My granddaughter in Australia is going to get married, and I want to go to the wedding. And I knew that this woman who was using oxygen just soon, helped her to walk from her living room to her bathroom at home, on the level, she is never going to, you know, to tolerate flying at 32,000 feet that that is not a possibility. So how are we going to bring the joy of the wedding into her life when she can’t be in Australia for the wedding? But the important part for our discussion here is she’s changed the parameters of what she wanted. It’s not a once and for all decision. She was wanting quality of quantity. Now she wants quantity. She put up with any treatments to be still alive when the wedding happens. So she is still alive when the wedding happens. And this is, I can’t remember now, the 20 early teens, long before COVID, wrong. Skype was the thing we all used to talk to each other. So she Skyped into this wedding. It’s stupid. O’clock in the morning in England. She’s got her lovely clothes on. She’s got her grandma’s and wedding hat on. You know? It’s fantastic. So she comes in the next time I see her, and she’s gone back to had the wedding. I’m going back now to it doesn’t matter how long I survive. I just want good quality of life. And so it’s flipped. And then the next time I see her, and she’s noticeably more frail, the granddaughter is pregnant. So now, right? I want to, I want to see this baby born now, actually, she clearly now she’s deteriorating month by month, we can see that she isn’t going to live long enough to meet this baby. But again, what can we do to bring the joy of that and the knowledge of that and the grannying of that, or the great granny of that, into her heart and soul of life and into her family’s life? So she gets knitting, and she’s knitting Fast and Furious for the time that she’s still able to so there’s this bunch of baby clothes going to be posted halfway around the world to this great grandchild that she’s never going to meet. But every time her granddaughter takes out, you know, pair of mittens or middle cardigan or whatever. She’s getting her grandmother’s love out of the draw at the same time, her grandmother’s investment in her and in her child who she’s never going to meet. So if we’re honest about the conversations, and if we focus the conversations on what matters most, we can use those as the stepping stones for the incidents that actually happen that we can’t prepare for in detail. But once they happen, once an illness declares itself, once there’s a critical treatment decision about, do we do this or do we do that? And the person’s not well enough to say, the information you need isn’t it checklist or pay would definitely want this, or them definitely not want that. It’s which of the decisions that we can make best matches what matters most to
Eric Zimmer 29:50
this person. That makes a lot of sense. And can I request you to be my palliative care doctor? Now? Can I make that request? I. Oh,
Kathryn Mannix 30:00
Eric, you’re very sweet. And sadly, I stopped work to do this work, I took early retirement some time ago now, to do something about public understanding of dying. There was a particular incident. I talked about it in the book of meeting a family with a very, very elderly dad with masses of medical notes for people who are listening to us. My hands are maybe 12 inches apart. Just so many things wrong with him in his 90s. Had they had none of these conversations, and he was blue lighted into hospital having CPR almost dead, and we had to have that conversation, and they had no preparatory conversations at all, and I don’t know how many dozens or more times I’ve met families like that, but this was the family that broke me. This was the family where afterwards, I mean, we gathered things together, and that dad was looked at beautifully, and he died very gently, but they stay with me. Somebody’s got to do something about public understanding of dying. Somebody’s need to do something about the way Hollywood portray thing. Somebody needs to do something about the fact that the newspapers pick up the rare, the unusual, the difficult. They’re true, but they’re the exceptions. And now, because we don’t understand dying, we grasp those exceptions and think that’s the normal and gradually over the course, I would say, probably six or eight months, it dawned on me that I have many, many stories to tell about ordinary lying. Storytelling is our ancient way of giving each other insights and I knew that it had to be stories, and I knew I wasn’t going to be able to tell stories without even some discernment time. So I stepped out of medical practice to make the space to think about how that could happen. And I miss being heart of my fantastic team, and I miss meeting those fantastic families at that really poignant time in people’s lives. And yet this has been such a rewarding new way of working.
Eric Zimmer 32:10
So I have a couple questions of curiosity, I think, maybe more than anything else, but I’m going to indulge myself here. When we say someone dies of old age? What do we mean? Just something critical gave out, but it didn’t have a diagnosed disease before it gave out. That’s such a great
Kathryn Mannix 32:29
question. And around the world, I don’t know, it’s not always legal for a doctor to say that a person died of old age. Sometimes they’re required to give a medical diagnosis. In Britain, it is legal in England and Wales, which is our area of jurisdiction, to give a diverse old age, provided it’s given by a doctor who’s known the person for a considerable amount of time. And so the queen, Queen Elizabeth, the second death certificate, is given by her general practitioner insult them as old age. So old age is a death from a condition called frailty. Now they use the word frail in common parts. It has a particular meaning in this and it’s usually that this person who may be aged or who may be young and just unfortunate, has collected enough mini diagnoses, enough things, not long enough with them to kill them, but the accumulation of those things now is a burden on their energy and on their well being. And I have a colleague who describes this a little bit like paper boats. You get a piece of paper and you do those special Origami Folds that we can all do to amuse a small child, and you end up with a tiny little paper boat, and it’s got crisp folds, and it’s got flat paper, and it sits up, and you can stick it on a bathtub, or you stick it on the river nearby, and it sits up and it’s crisp and it’s clean, and it looks great as soon as it touches the water. As soon as our little bit of water gets over the lip into it, it’s weakened. And gradually the weakness spreads through it, and maybe there’s a big ripple. Maybe you put it on the sea on a calm day, and then somebody throws a pebble in nearby, and a big splash lands on it, and it disintegrates. So it has a sense of looking whole, looking complete, and looking strong. If you try to tear an origami folded paper boat, it’s really hard to tear it, but when it’s on the water, it’s completely vulnerable, and the water is life, and it’s the next thing that comes along is the pebble that throws the water onto the little paper boat, and whichever is the weakest link now disintegrates and allows the other. Things all is sequenced to unravel. And if it had only been one thing wrong, that would have been recoverable. Had only been two maybe three things wrong, it could have been recoverable. But there are so many little bits of us not quite working well anymore that we’re not well enough to recover. And so it’s interesting to notice that over the age of 80, if a person falls over and breaks their hip, their life expectancy on the day they break their hip is shorter than if they’d been diagnosed with lung cancer on that day. And it’s not because they’ve broken their hip, it’s because they fell and they couldn’t write themselves and they couldn’t catch themselves as they went down, and it’s because of the way they landed. And that’s all about the muscle strength and their bone strength and their coordination. And once they’ve suffered the injury, it’s about the way their blood clots or doesn’t clot. It’s about whether their lungs are strong enough to be able to sustain them for the anesthetic they’ll need for the operation to correct the fracture or replace the hip joint. It’s all of those tiny little things that mitigate against them. So if a person is striding out across the road in the hip like a car when they break their hip, that’s different, because they didn’t have the fall. But there’s something about the cumulative effects of aging in the body, where the whole thing holds together until there’s something that happens, and then it just can’t work any longer. So it’s really interesting. There are photographs of the Queen at Balmoral seeing off the old Prime Minister and welcoming the new prime minister. And when it was announced that she was going to accept the resignation and receive the new prime minister at Balmoral, when that was announced, I said to my husband, she’s going to do 10th in six weeks because she can’t risk going back to London. She hasn’t got the energy to go to London and get back again. This is an absolute sea change in her behavior, and we’d seen a change in her behavior for some time. She’d been gradually delegating, always predictably started walking with a sick had the massive hit of her husband of out of Illinois, 60 something years they’ve been married, but then she started to delegate at the last minute to send apologies for things that she was actually fully expected at. So you can see that the rate of change in the predictability is starting to shift. And then she didn’t go back to London for the change of Prime Ministers. And for those of us who’d been watching, the queen had been dying in clear site for about two years, but newspapers covered it as though the death was a Surprise and was quite sudden it wasn’t at all you
Eric Zimmer 38:17
that leads us into The idea that there is a predictable pattern. We’ve talked about it a little bit, but I’m wondering if you could walk us through in just a little bit more detail what the predictable pattern of dying looks like. I found this really helpful when Jenny’s mom passed from Alzheimer’s. Even though Alzheimer’s is different than other things, the actual dying process was exactly as people sort of laid it out to be. And it was really helpful to know, oh, here’s what’s happening, and then this is going to happen. And so I’d love to give listeners that information. Okay,
Kathryn Mannix 38:54
so what we’re talking about now is that very last part of living, the variety of roots, of getting to there. Maybe the frail person whose paper boat just unfolds over the previous week after looking okayish for a long time, maybe somebody who’s been gradually struggling more and more with heart problems, lung problems, a cancer diagnosis that seemed really well held by treatment until relatively recently, that has now escaped whatever it is, but we’re now talking about the end game. I suppose this is the equivalent of giving birth rather than what the pregnancy was like beforehand. So when we’re down to the last few weeks and days of life, there are some consistent things that we see. We see that people lose interest in the outside world. They become more and more focused on the people investing those to them, the state of their own selves, and often the kind of retrospect about their lives and what it’s all been about and have they are doing the reckoning how. They live their lives according to their standards, and that might be the standards of a faith or religious legal environmentalism, whatever the thing that matters to them, the things that matter to them, we see people losing interest in food, and that’s really hard for families, because we show people we love them by feeding them. All around the world, we do this. People who really have no appetite left because their gut is starting to feed just slow down. It’s not doing digestion effectively anymore. So if they try and eat that meal that their daughter has laid for now to make it’s just going to sit like a lump, and they kind of feel uncomfortable and so hard, but we see families trying to sway people to eat.
Eric Zimmer 40:47
Can I ask a question about that part of it? Yeah, because that stopping eating is kind of a common thing, and the worry that I’ve had when I’ve been around somebody dying is that they’re starving. And I mean the psychological condition of feeling like you’re starving, yeah, and it sounds like you’re saying that’s not really the experience that it seems like they’re having no
Kathryn Mannix 41:10
it’s fascinating. What seems to happen is that they have a failure of hunger, and they no longer desire to eat. And when you face them with a meal, they can look at it. They can see it’s beautifully presented, and maybe it smells delicious, but just I already feel as I’ve eaten, I just don’t want that. So the wisdom that I give to families is go for the volume of a teaspoon, tiny tastes that are just for pleasure, because people don’t in the main die because they’re not eating. They’re not eating because they’re dying. And it’s one of the signs that the process is evolving. So very often, their taste buds will still appreciate just tiny taste of things that they’ve all those loved. So just in case you happen to be in town when it’s my turn, it’s going to be baked rhubarb, please, no ginger on it, but lots of sugar or elder flour, cordial and vanilla custard, proper, vanilla custard. Okay, that’s my teaspoon. That’s my tiny taste. Something for pleasure.
Eric Zimmer 42:17
I think I want Mikey’s late night, sliced pizza with a little bit of crushed red pepper on it and Ginny’s banana cream pie.
Kathryn Mannix 42:24
Okay, so that’s clear. So you’re allowed two teaspoons then, because that’s very specific, and they’re not going to taste together on the same spoon, very good. No, those
Eric Zimmer 42:31
are going to be different events. So
Kathryn Mannix 42:33
gradually, the body is showing us that it’s changing less appetite, less energy, and the energy failure is the really interesting bit, because the bit that replenishes lost energy now isn’t eating and drinking, it’s sleep. Fascinating. Who knew? So you will see that the person will drop off to sleep. Now, for people who are listening to us, who like their afternoon nap, mine one of those. I’m not talking about the nap that you’ve planned and you’re looking forward to. This is a kind of nodding off in the middle of a conversation that is just irresistible. And the person will sleep for a while, they’ll wake up, they will recharge their batteries, they’ll have a bit of energy to do something for a while, and then they’ll fall back to sleep again, so that it’s almost like, you know, a mobile phone with one of those old batteries that didn’t used to hold its charge of it like that. And as time goes by, the periods of time spent sleeping last longer, and the periods of time awake that they buy last shorter. And also, it’s important for people not to be frightened by a thing that isn’t uncommon, which is people getting a little bit stuck between sleep and awake, which has happened to all of us really deeply asleep, and your alarm goes to waiting you can work time, or particularly, it happens when you know you only got an early flight, and you set your alarm so you don’t miss it, so you’re waking at a different time from usual, and in your dream, the noise, that’s real, that’s the alarm, becomes a feature of the dream. So you start to dream about fire engines, and there’s a fire somewhere. And then as you wake in, you realize, oh, I was dreaming, but there’s a fire. Where’s the fire engine? What’s going on here? There’s a fire engine in my room, and then you waken in there to say, No, this is my alarm. I can turn it off. But there’s that moment of being trapped between the things that are real in the room, the noise and the things that are not really in your head, which is the dream about the fire engines. And we call this muddledness dindirium, and there are lots of causes for it towards the end of life, but very commonly it’s just being a bit stuck between sleep and wake. And if it frightens the family and they start to be agitated, then the agitation communicates itself to the person, so they then think there’s something to be frightened about. So they then become agitated. Too. So being able to say, Oh, Dad, you’re kind of talking to people in your dreams here. That’s okay. It’s fine. It’s lovely to see them, isn’t it. We’ll have another cup of tea. Your voice stays calm. Your de Nina stays calm. It doesn’t wind his father. So as time goes by, we find the person is sleeping more. They’re awake less, and very often that might mean now that they can’t wake up at times when they would have been taking medications for you know, some people have symptoms like pain or breathlessness. A lot of people towards the very end of their lives have no symptoms at all. And it’s really important to say that dying doesn’t cause discomfort. The illness that they’re dying from might cause discomfort. Towards the very end of somebody’s life, they’re not just asleep anymore. They’re actually dipping in and out of unconsciousness. They don’t know they’ve been unconscious, but we might notice it because a visitor came, or it was medicine time, and we couldn’t waken them. And when they wake up later on, they come back up from deep unconsciousness through sleep, back to being awake again. And we say, Oh, we couldn’t awaken you at all. And they say, Oh, you listen to tried hard enough. So being unconscious is not something that we realize is happening to us, which is the clues in the name, I suppose, isn’t it? So towards the very end of people’s lives, they’re not awake, that they’re not asleep, they are unconscious, and it’s really important people understand that, because otherwise they’re afraid to go to sleep a time, and sleep is your most important ally for keeping you as well as you can be under the circumstances when the brain lapses into complete unconsciousness, there are only two things instantly. One is it can still hear sound. I don’t think whether it still responds to it. With misophonia, that’s an interesting thing to speculate about, but we know that people do still hear sound. How we observe that people often look more rested when the right voices of the room, or get a little bit agitated when the wrong voice is in the room, and we’ve seen people synchronizing their breathing to deliver the music being played in the room. So that’s really interesting, that in this state of deep unconsciousness, hearing is probably still connected to our emotion system and our sense of calm. So you will see nurses talking to people dying people, people who have head injuries or strokes and Deep Field cultures, and the nurses are still talking to them. That’s why. And then the other part of the brain that’s still working is part that controls our breathing, and it’s now doing something that we’d normally never see, which is, instead of kind of breathing that you and I are doing, where we’re not really thinking about start reading, except now we’re talking about, of course, we are now thinking about our breathing. We’re managing our breathing so we’re both thinking into microphones, so we’re being aware of not taking big, hissy, sucky breaths as we do that, we’re taking sufficient breath to speak a particular length of praise before we pause, take a breath and say the next phrase, and people who are listening to us are properly managing their breathing so their breath sounds aren’t obscuring our voices coming into their ears. So during normal life, we take breathing for granted. We don’t really think about it, but we do manage it. Now in deep unconsciousness, the brain does primitive reflex breathing cycles, and they look and sound peculiar. They go backwards and falls between very deep breathing, that can be sighing, it can be coming out through the vocal cords, so there’s room noise, and faster but shallower breathing, which can look as though the person is breathless. So if you’ve never seen that before, then you need somebody who has seen it before to say to you, you know this breathing is completely normal, your dear person is deeply unconscious. This breathing tells me that they’re beyond feeling distress from symptoms in their body. They’re completely safe. They’re dying, but they’re safe, and that this is hard of ordinary dying, and it’s the last part. So once the breathing is changing like this, then we might be down to the final hours. Sometimes it’s days, sometimes it’s really short. So this is the time if you want to be alongside the person to sit down. Bring yourself a book. Bring yourself a newspaper. Bring your slippers with you. Be a good visitor. So at home in our houses, we don’t normally sit locked tight next to the person, eyeball to eyeball, looking at them, stroking them. Not in my house, we kind of ignore each other in a loving kind of way most of the time. So. How do you help families to feel peaceful around the death as you remind them that actually here we are, they can hear you. So why not chat to each other? Think about some of the funny things that have happened in the past. Think of some of the important things that happened in the past. Just tell them they’re safe, that they’re loved. They’re doing okay. You’re doing a great job of creating the safe space that this person can leave their life from. What’s really fascinating is how often, despite the fact that this family’s had a Rota, there’d be two or three people in the room the whole time. It’s the 1/32 interval where everybody got called away at once that the person stops breathing. Why does that happen? We just don’t understand it. But it does seem to happen more often than can happen by chance. Sometimes the person carries on doing this terminal breathing for a very long time, and then the person they’ve been waiting to arrive from around the world. They arrive, their voices in the room, and within minutes, everything is just very gently, slow, because there’s nothing special about the last breath. It’s not Hollywood. During one of the periods of slow breathing, usually shallow breathing, there’ll be a breath out just now, another breath in afterwards. So people don’t suddenly sit up and, you know, tend the family secrets or whatever. It’s much, much more gentle than that. There are occasional times when a person will rally unexpectedly for a few hours to a day, very closely before death that again, let’s not leave those important conversations waiting for that time. That’s called the rally, because it doesn’t happen to most people. Let’s have the important conversations first. So we seem to have a little bit more control than we can understand about the moment of dynasty. It seems to be possible to wait for the morning. It seems to be possible to wait till the room is empty, to be able to wait until the important news is broken, until the right person has arrived. But not everybody can wait. And sometimes you’ve dashed around the world only to arrive and it’s just a few minutes too late, but usually the family have said, you know, Susie’s on her way, dad, and just knowing that Susie’s on her way has been a helpful part of the consolation at that time. So there isn’t a right way or a wrong way of doing this. I’ve seen families sitting around beds, telling jokes, ribbing each other the way they always have, reminding each other of childhood fights that their dad told them off about while dad’s peacefully dying. I’ve seen families singing souls. I’ve seen families using whatever other sacred scriptures of their tradition because that’s the way their dad would have wanted it, or that’s what their family tradition is. I’ve seen families who just sit in silence, maybe with her favorite show tunes in the background. There isn’t a right and wrong way of doing it, but always, there’s a sense of something very powerful is happening in that room, that there’s a huge amount of love in that room. Also, of course, the difficult things are also in that room. No family is perfect. Every family’s got those times that were difficult. They haven’t gone away either. And so coming back to our wolves, we can feed that anger into the Bad Wolf, or we can say, Okay, this has lasted long enough. We can let that anger go and we can feed the Good Wolf even the SED Well,
Eric Zimmer 53:36
I think that is a beautiful place to wrap up. That was a very nice ending on your part, you and I are going to continue to talk a little bit in the post show conversation. I want to talk about palliative care, because palliative care is more than just hospice care, and I want to explore that. I think this is a really useful thing for people to know about. Listeners, if you’d like access to the post show conversation, ad free episodes and the chance to support something that matters to you. Go to one you feed.net/join Kathryn. Thank you so much for coming on. I’ve really enjoyed this conversation. Heavy as it is, it’s been a treat. Thanks so much for inviting me. You
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