The One You Feed - Wisdom for Living While Navigating the Journey Towards Death with Kathryn Mannix

Episode Date: October 29, 2024

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 its 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 For full show notes, click here! Connect with the show: Follow us on YouTube: @TheOneYouFeedPod Subscribe on Apple Podcasts or Spotify Follow us on Instagram See omnystudio.com/listener for privacy information.

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. Welcome to The One You Feed. Throughout time, great thinkers have recognized the importance of the thoughts we have. Quotes like, garbage in, garbage out, or you are what you think, ring true. And yet, for many of us, our thoughts don't strengthen or empower us. We tend toward negativity, self-pity, jealousy, or fear. We see what we don't have instead of what we do.

We think things that hold us back and dampen our spirit. But it's not just about thinking. Our actions matter. It takes conscious, consistent, and creative effort to make a life worth living. This podcast is about how other people keep themselves moving in the right direction, how they feed their good wolf. I'm Jason Alexander. And I'm Peter Tilden. And together, our mission on the Really Know Really podcast is to get the true answers to life's baffling questions like why the bathroom door doesn't go all the way to the floor,

what's in the museum of failure, and does your dog truly love you? We have the answer. Go to reallynoreally.com and register to win $500, a guest spot on our podcast, or a limited edition signed Jason bobblehead. The Really No Really podcast. Follow us on the iHeartRadio app, Apple Podcasts,

or wherever you get your podcasts. Thanks for joining us. Our guest on this episode is Katherine Mannix, who 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 in teams in hospices, hospitals, and patients' own homes to deliver palliative care, optimizing quality of life as death is approaching. Catherine is qualified as a cognitive behavior therapist and started the UK or possibly even the world's first CBT clinic exclusively for palliative care patients. Today, Eric and Catherine discuss her book, With the End in Mind, Dying, Death, and Wisdom in an Age of Denial.

Hi, Catherine. Welcome to the show. Eric, hi. Thanks for inviting me. 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 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 and 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

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 wealth door and towards courage and towards being in loneliness and holding life in a way that's trusting. That's beautiful. It makes me think of the idea of avoidance, when you avoid what you fear, you strengthen it. You're subtly sending the message to yourself, I can't handle this. 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, and it 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 good denial just enough to say, is there a little bit of this that i could deal with today then you're stepping up in courage and you're stepping up 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 metaphor of the world is that worlds work in packs and that

we live in community and the people who are facing the ends of their lives sometimes tragically are alone but that's really rare and 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. And by enabling them to start a conversation that requires courage, that requires tenderness, and I've written separately about that, then we've moved 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?

So you have a wonderful story in the book about denial, but I don't want to go there just yet. Right. Okay. How do we do this? 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 think this is really interesting, because it's not that we don't think about it. It's that we don'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 perceive this conversation, or we might be watching really carefully in case this is going to be triggering for them. 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. 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, and we had to move very carefully around each other to get to the hot water boiler or the cupboard that the mug's 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 back up 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 at 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, receded the message that she can call on us if she wants support, but we're not going to 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 time and we see it also in the media so on 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 we're being careful with the language

and it's partly because we've awfulised dying itself. We understood it, recognised it, saw it frequently. Three generations ago, I'm going to say. Now it's something that we don't see. It's been medicalised, it's become a kidnap 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 recognise that it's a pattern, to recognise that it is recognisable, that the patterns of basis are similar from person to person, that if you pace our way through it, you can realise what's happening to the person we're accompanying. 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 recognizable faces and 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. 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 that's a really interesting thing. And I think it might be Ronald Reagan who was culpable in the first place of saying,

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, a battle metaphor actually is quite helpful. So we mustn't throw the baby out with the bathwater here. 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've interviewed, and I really enjoyed listening to your interview with the wonderful Eloah 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 a battle. We will simply have finished our lives lives and we have to die something. It's interesting that the battle metaphor isn't used so much for the other things that we die from. So, commonest cause of death in older people now 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 is 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. little bit surprised to be asked, but also they'll appreciate it.

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, mom, you're fine. You're fine, mom. That's a long time down the road, dad. 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 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 seventh decade, I know how to believe in it. You know, I still go out running. I'm 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 i'll come a phase perhaps when the illness or the illnesses that will eventually end our lives declare themselves when we'll start to notice that the trouble with my heart or 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 enough months 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 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, and what the noises around me should be. Some people may end up on playlists.

I'm a fan of thoughtful silence a lot of the time, so 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. 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, I'll send it to you for the show notes. It came somebody in the USA which was for Thanksgiving dinner to ask the people around the table three questions and it was their desert island that's probably not it doesn't translate across the Atlantic we have a show called Desert Island Discs the seven no it does yeah yeah it's

an American term yeah we, we get that. To a desert island, right. So they're desert island books or discs or whatever. Their 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 guess 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 end of life care questions.

And you think, if people don't even know each other's favourite 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 these questions 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 because when I think about death, the question to me would be, well, you want to be buried? You want to be cremated?

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 sounds like that. You say in the book that there's usually little to fear about death and much to prepare for? I think that we fear it so much that we don't start the preparations. And it's absolutely the other way around. So first of all, the intention of the book is to decatastrophize 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 gonna 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 a 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 cared for by 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 ten how's that going to work for you all 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? And it's just meant to stop people from making assumptions and instead to have those conversations. And if you know the process, then you can work out, OK, how much of that process could I actually live just in the place that I normally enjoy living and 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 neighbors can i afford come from services i pay from what will the state provide for me lots and lots of things to think about and then that particular thing that you have said about the soundscape around us or about the way we're touched 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 who have the need to understand that and how they are to be touched people who are misphoning it 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 people in my life know your guys really know yeah and so do hundreds of thousands of podcast listeners but you see because i didn't, 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 there are these things, aren't there, of thinking about what do I need to know about this person? There's a psychiatrist in Winnipeg in Canada, Harvey Chochinoff, psychiatrist in Winnipeg in Canada, Harvey Chochinov, internationally famous for his work in palliative and end-of-life care for dignity therapy. And he has this question, what do I need to know about you as a person, in order 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 from person to person. And then those individual things,

oh, right, okay, I was going to 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, poor Catherine, lying in that room and it's completely silent inside the grave I must be terrified there, I'm going to put some cheerful music on, no

what do you need, not what do I think you need I'm Jason Alexander. And I'm Peter Tilden. And together on the Really No Really podcast, our mission is to get the true answers to life's baffling questions like why they refuse to make the bathroom door go all the way to the floor. We got the answer. Will space junk block your cell signal?

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I wanted to pause for a quick Good Wolf reminder. This one's about a habit change and a mistake I see people making. And that's really that we don't think about these new habits that we want to add in the context of our entire life, right? Habits don't happen in a vacuum. They have to fit in the life that we have. So when we just keep adding, I should do this, I should do that, I should do this, we get discouraged because we haven't really thought about what we're not going to do in order to make that happen. So it's really helpful for you to think about where is this going to fit and what in my life might I need to remove.

If you want a step-by-step guide for how you can easily build new habits that feed your good wolf, go to goodwolf.me slash change and join the free masterclass. 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. 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. You're absolutely right. What does that even mean? But that's the planning that's hard. You're absolutely right. And I think that if we think about planning as a list with tick boxes, the list would be infinite, 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 of each day? What matters most? And we can have those conversations and actually they're 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 if in the future there's some kind of medical event that makes it difficult for the person now to express their wishes, like they have a stroke, for example, instead if I'm your mother's doctor and she's had a stroke, heaven forfend, instead of saying to you, what did your mother say she would want to do about tube feeding, having a ventilator, living in a rehabilitation facility, yeah, yeah, yeah, I can say to you, explain to me what matters in this team. Because then I can talk with you about all of 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 who 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 paroxysms of panic when she lost her breath she always thought this was the time i'm 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 that 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 that means 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 to help her to walk from her living room to her bathroom at home on the level she is never going 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 over quantity. Now she wants quantity. She'll put up with any treatment 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.

Skype was the thing we all used to talk to each other about. 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 wedding hat on. You know, it's fantastic. So she comes in the next time I see her, and she's gone back to, you know, we've 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 we see her, and she's noticeably more frail, the granddaughter is pregnant. So now, right, I want to see this baby boy. 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 grannying 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, a pair of mittens or a little cardigan or whatever, out, you know, a pair of mittens or a little cardigan or whatever, she's getting her grandmother's love out of the drawer 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 we need isn't a checklist of they would definitely want this or they definitely don't want that it's which of the decisions that we can make best matches what matters most to 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 oh eric you're very sweet 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.

And 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'd 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 the dad was looked at beautifully and he died very gently but they stayed with me somebody's got to do something about public understanding of dying somebody needs to do something about public understanding of dying. Somebody needs to do something about the way Hollywood portrays dying. 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 of probably six or eight months, it dawned on me that I have many, many stories to tell about ordinary dying. Storytelling is our ancient way of giving each other insightful information. I knew that it had to be stories and I knew I wasn't going to be able to tell the stories without 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 part of my fantastic team and I miss meeting those fantastic families at that really poignant element of people's lives. And yet, this has been such a rewarding new way of working. 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 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 diagnosis of diabetic 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 II's death certificate is given by her general practitioner in Scotland as old age. So, old age is a death from a condition called frailty.

Now, we use the word frail in common parlance. It has a particular meaning in medicine. 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 can 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 a 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've 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 in sequence to unravel. And if it had only been one thing wrong, that would have been recoverable. If it 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 right 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 anaesthetic they 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 and they're hit by a car and they break their hip, that's different because they didn't have the fall. But there's something about the cumulative effects of ageing 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 Val Norell 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 be dead 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 behaviour. And we'd seen a change in her behaviour for some time. She'd been gradually delegating, always predictably started walking with a stick, had the massive

hit of her husband of, I don't know, 60 something years they'd 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 sight for about two years. But newspapers covered it as though her death was a surprise and was quite sudden. It wasn't at all. I'm Jason Alexander. And I'm Peter Tilden.

And together on the Really No Really podcast, our mission is to get the true answers to life's baffling questions like why they refuse to make the bathroom door go all the way to the floor. We got the answer. Will space junk block your cell signal? The astronaut who almost drowned during a spacewalk gives us the answer. We talk with the scientist who figured out if your dog truly loves you and the one bringing back the woolly mammoth.

Plus, does Tom cruise really do his own stunts his stuntman reveals the answer and you never know who's going to drop by mr brian kranson is with us how are you hello my friend wayne knight about jurassic park wayne knight welcome to really no really sir bless you all hello newman and you never know when howie mendel might just stop by to talk about judging. Really? That's the opening? Really, no really. Yeah, really. No really. Go to reallynoreally.com.

And register to win $500, a guest spot on our podcast, or a limited edition signed Jason bobblehead. It's called Really, No Really, and you can find it on the iHeartRadio app, on Apple Podcasts, or wherever you get your podcasts. 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 Ginny'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. So what we're talking about now is that very last part of living. There's a variety of routes of getting to there. Maybe the frail person whose paper boat just unfolds over the previous week after looking okay-ish 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 who matter most to them, the state of their own selves, and often kind of retrospect about their lives and what it's all been about, and have they been doing the reckoning? Have they lived their lives according to their standards? And that might be the standards of a faith or a religion,

or people, 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. And people who really have no appetite left because their gut is starting to just close down. It's not doing digestion effectively anymore. So if they try and eat that meal that their daughter has slaved for an hour

to make, it's just going to sit like a lump and they kind of feel uncomfortable. And it's so hard. But we see families try to persuade people to eat. 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. And it sounds like you're saying that's not really the experience

that it seems like they're having. No, 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. But very often their taste buds will still appreciate just tiny tastes of things that they've always 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 elderflower, cordial, and vanilla custard, proper vanilla custard. Okay? That's my teaspoon. That's my tiny taste. Something for pleasure. I think I want Mikey's late night slice pizza with a little bit of crushed red pepper on it and Ginny's banana cream pie. 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, are they? No, those are going to be different events.

So gradually the body is showing us that it's changing less appetite less energy and the energy failure is a really interesting bit because the bit that replenishes lost energy now isn't eating and drinking it's sleep how 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 and i'm 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 it will recharge their batteries they'll have a bit of energy to do something 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 it's almost like a mobile phone with one of those old batteries that didn't used to hold its charge, a bit 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, where you go deeply asleep and your alarm goes to waking you because it's work time. Or particularly it happens when you know you've 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 and you realize oh no no i was dreaming but there's a fire where's the fire engine what's going on 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 enough 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 real in your head, which is the dream about the fire engines. And we call this muddledness delirium, 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 awake. 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 demeanor stays calm It doesn't wind at all up. 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, 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 you that dying doesn't cause discomfort the illness that we'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 waken later on, they come back up from deep unconsciousness through sleep back to being awake again. And we say, oh, we couldn't wake you at all. And they say, oh, you must have tried hard enough. So being unconscious is not something that we realize is happening to us,

which is the cleaners in the lane, I suppose, isn't it? So towards the very end of people's lives, they're not awake, but 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 of 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 it's still doing. One is it can still hear sound. I don't know 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. And we observe that people often look more rested when the right voices are in 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 the rhythm of music being played in the room. So it'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 deeply unconscious and the nurses are still talking to them, that's why. And then the other part of the brain that's still working is the part that controls our breathing that is now doing something that we normally never see which is instead of kind of breathing that you and i are doing where we're not really thinking about our breathing

except now we're talking about of course we are now thinking about our breathing we're managing our breathing so we're both sneaking into, 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 phrase 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 forwards between very deep breathing that can be sighing, it can be coming out through the vocal cords so there's a kind of 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 part 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 bed 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 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 been two or three people in the room the whole time, it's the one 30-second interval where everybody got called away at once, but 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 a 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 voice is in the room, and within minutes, their breathing is just very gently slowed down and stopped. Because there's nothing special about the last breath. It's not Hollywood. During one of the periods of slow breathing, usually shallow breathing,

they'll be a breath out, just have another breath in afterwards. So people don't suddenly sit up and you know tell 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 but, 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 the last life. It seems to be possible to wait for the warning. It seems to be possible to wait until the room is empty,

to be able to wait until important news is broken, until the right person has arrived. But not everybody can wait. And sometimes people have 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 dad's favourite 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 as a deathbed. Well, 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 oneufeed.net slash join. Catherine, 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.

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And I'm Peter Tilden. And together, our mission on the Really Know Really podcast is to get the true answers to life's baffling questions like why the bathroom door doesn't go all the way to the floor, what's in the museum of failure, and does your dog truly love you? We have the answer. Go to reallyknowreally.com and register to win $500, a guest spot on our podcast

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