Living with the End in Mind

Kate Bowler: I remember the first time the hospital talked to me about palliative care. Frankly, I was not thrilled. Well, what I thought that they were saying was that they were giving up. I didn’t understand what palliative care doctors did or could offer. And certainly no one explained it to me. And also, if one of you did explain it to me, I’m sorry if I wasn’t listening very carefully. But I probably said something like, no, thank you. More regular treatment, please. Regular doctors with drugs and possibilities and cures would be nice. I’m Kate Bowler and this is Everything Happens. Okay. And also, if you just hear the phrase palliative care and you’re like this episode is not for me. Hold on for one second, because this conversation actually gave me like a key to something that I now use to kind of think about my life or choices as a whole. Palliative care is an actually relatively new field of medicine. And if you’re like me and had no clue what it actually means, you’re not alone. It became an official specialty in 1990. And primarily, it’s an interdisciplinary approach to relieving suffering. Sometimes that’s pain management. Sometimes that’s setting more realistic goals. Sometimes that’s navigating hard conversations on when to stop and start treatment. But it doesn’t necessarily mean that you’re dying or at least dying any more than anyone else at any time. And in fact, as my guest today says, they quite like it when you live. Specialty doctors and oncologists often go to war with your disease and thank God for that. But when side effects become too much or the idea of a cure seems too far off, palliative care doctors help bridge your specific needs and goals with available treatment options. Palliative care physicians help people navigate those small choices that we have to make a life your life comfortable. It’s customized care. And these doctors have become some of my very favorite kinds of people. And here’s the secret that they have: they know how to speak a language of uncertainty and limited agency, by which I mean our ability to choose to act within all the very real limitations that we live under. So, even if you’re not dealing with high health dramarama, I am positive that listening to the way that she thinks and speaks today is going to change how you think, too. Today’s guest is someone really special. She’s a palliative care physician who has married her specialty with cognitive behavioral therapy. It means she offers really practical steps to help people and their loved ones make sense of what limited choices they might have. She helps people navigate pain or fear. She reminds people that our bodies are doing exactly what they’re meant to do. And she offers the most comforting speech on what the end of a life looks like and what it sounds like. I thought and I’m so sorry that our beautiful guest is going to hear this and hear me saying this, but I thought I was going to hate this conversation, that it would be too scary and that knowing, say what a body goes through in final days was not information I wanted to know. But there’s something so deeply comforting about talking about limitation. It makes it so much less scary. So this conversation, this person, is a masterclass in walking right up to the edge with people in the most gentle and compassionate way.

Kate: Dr. Kathryn Mannix is a physician and psychotherapist. She has spent her career working with people who have incurable advanced illnesses, working to increase people’s quality of life as they think about all of the many ways in which we decide our own limitations. She also started the UK’s, and possibly the world’s, first cognitive behavioral therapy clinic exclusively for palliative care patients. And she is the author of books I absolutely love because they are moving and textured and gorgeous, like With the End in Mind and Listen. Kathryn, I am so grateful you are here.

Kathryn Mannix: I am so delighted to meet you. I’ve been listening to you, your voice is in my head. And what I notice is the kindness in your voice, that’s what I really like about listening to your podcast.

Kate: So when I think about death, we’ve decided that this is the horrible and awful conversation and that the most important thing is to not think about it for as long as possible. And that is the cultural memo that I received.

Kathryn: I’m not sure that’s not talking about dying is really working that well for us, is it? What do you think? As a as a strategy, as it working?

Kate: Maybe the other theory I had was like, you should just leave this. Like, don’t think about it for as long as possible. And then because I love professionals, I believe in professionals, just leave it to the professionals.

Kathryn: It’s what has happened, I think over the 20th century. We gave dying to the professionals. And I think one of the things that I really reflect on is thinking about my grandmother. She’d been one of the women who looked after people who were so sick that they were probably dying at home until they either got better or died. And that’s what women have done for centuries. And it is largely women’s work, not exclusively, but largely. And she will have recognized the approach of death and the kind of repetitive things that you see from one death to another, and then the individual things that you see because it’s this person, then that person, then another person. So by the time she was 23, she was completely familiar with what happens is we die. I was 23, I had just spent five years at medical school. I knew nothing about dying. I just spent five years being taught how to stop people from dying. Yes. Yeah. Okay. So my very first morning as a doctor. A kind of test from on high, maybe. A nurse comes running down the old fashioned Victorian ward, you know, the rows of beds facing each other, shouting, get the doctor, get the doctor! Dr. Mannix, Dr. Mannix and I, who have been a medical student, I’m looking around to see where the doctor might be. And then I realize, yikes, that’s me. And she says, Mr. So-and-so is in the bath, and he doesn’t look very well. So I get into the bathroom, by which time the nurses have managed to get the water out of the bath, but Mr. So-and-so is still in the bath and he’s very wet and he’s very dead. So I helped them to lift him out of the bath, wrapped him in towels, and we sat him on a wheelchair because we couldn’t get a stretcher into the bathroom area, it wasn’t designed that way. So we’ve got this dead man sitting in a chair wrapped in towels with an extra towel, wrapped all the way round him and round the back of the chair so that he won’t slip out of it, and his head pop forwards and his spectacles dropped off. So I put his spectacles in the pocket with my white coat and we processed back along the ward. And when we came out of the bathroom, every set of curtains around every bed was closed. And I suddenly realized that death is a secret in hospital. All these men on this warc, they all knew each other. They woke up every morning and joked about the fact that they had woken up again this morning and knew about each other’s families and each other’s woes. Everybody knew his name and suddenly they weren’t going to see him again and they weren’t going to be allowed to say goodbye, those kind of transient friendships in hospital. So day one was my, how are you going to deal with dying then, Kath? And about a week later, I found his specs in my pocket.

Kate: We carry all these stories with us, don’t we? I mean, and I can think of I mean, so many things I’ve purposely blocked out because I was scared, especially being in hospital. So anything I don’t have to see, I didn’t want to see. And that makes a lot of sense to me until I think of how all the things I don’t see or don’t talk about, the volume on them just gets louder and louder and louder.

Kathryn: But that’s the thing, isn’t it, that we put all the all the scary things in that place that’s dark and we keep the lid on, so it is dark. And because there’s no information in there, there’s just fear and horror and superstition and and whispers and bad stories. Every time we take a look in, it’s so horrible that we slam the lid down again. And I think we can shine a light into the box. But the light is information and that has to be reliable information. So how do you know what information is reliable? How do you get to there? I need to say for the benefit of your listeners.

Kate: I was hoping you would because some people hear palliative care and they think it just means one thing.

Kathryn: Okay, so palliative care is the science and art of managing symptoms. And they might be physical symptoms, they might be emotional symptoms. They might be existential distress. It might be that you’re absolutely tickety boo, but your family’s falling apart around you and they need some support. Palliative care will kind of wrap you in an holistic care approach that can proceed right alongside the oncologist doing what they’re doing or the respiratory specialist doing what they’re doing. We’re partners in your care pathway, but if your illness is the kind of illness that can’t be cured, which generally it is, because the other way of getting rid of symptoms is getting rid of the illness, right? So generally, we meet people not because they’re dying, but with an illness from which probably they will die. And we’re often still associated with that care at the end of their lives. And that’s what gets us a bad rep.

Kate: Yeah.

Kathryn: Okay. But you’re not obliged to die because you’ve seen the palliative care team. And we quite like it when you don’t.

Kate: In American culture, they have this obsession with everything as possible. Everything is possible-ism takes up a lot of emotional, psychological, spiritual room. And everything is possible, of course, like, comes up against some pretty hard limits. In the case of like advanced, difficult or complicated illnesses, or problems of any kind. So it’s trying to come up with a way to describe like a limitation there without saying the thing that especially Americans fear the most, which is, well, won’t I then slip into some kind of despair or nihilism or then nothing will have meaning? And it’s funny that the opposite for a lot of people of everything is possible then became nothing is possible. And so I was trying to explain this place in between of like, because I’ve really settled on language like well we’re talking about limited agency. We can’t do everything, but we can do some things. But the difficult thing is choosing them really carefully. So when I read you and I listen to you, I think, wow, palliative care is this really unbelievable art and the wisdom around learning how to make small decisions in the midst of complicated illnesses. Does that sound right to you?

Kathryn: I think that’s really, really good because actually the big situation, and I know you know this from first hand, the big situation is so big that it boggles your mind and you can’t choose which little thing to focus on, because even if we’re going to make a journey of a thousand miles, we can only do it one step at a time. And so there’s something about choosing a direction. So I might talk to you about is your priority at the moment to live for as long as possible or to have the best possible quality of life, which might mean not having some of the more toxic treatments. So it’s a kind of trade off. Where do you sit with that tradeoff? Because once we know the direction, then we can start to make the smaller decisions about where’s your priority today? What are the treatment options right now? Thinking about the treatment options themselves as experiments. How well will this work for you? How well will you get on with this if it takes away your pain but you’re one of these people whose brain is particularly sensitive to this drug? You might find that you’re beautifully pain free, but asleep most of the time. That’s rare, but it can happen. And of the people that happens to you, some might say this is absolutely unbearable. I need my brain back. I’d rather have some pain than be not present. And other people say this is absolute bliss. I have been in pain for so long and now all my pain is gone. And actually, sometimes when somebody’s pain is gone, they just need to do a lot of sleeping to catch up with the exhaustion that they’ve had from a long period of pain. So palliative care is a series of little experiments where what we’re saying is this is what we can do, this is what we can offer, this is what you can try and we’ll keep an eye on you when you’re trying. We’ll ask you how it is for you. We’ll adjust it around you. So it isn’t that there’s one answer. It’s that there’s a variety of little possibilities.

Kate: So you get some of your control back, too.

Kathryn: Yeah. Well, you’re in charge. We are here at your service, and I think maybe medicine’s forgetting that a little bit sometimes. This is, you’re the patient while you’re in the system, we’ll wind the handle and off you go down the conveyor belt and it can feel very like that, can’it it. So to be able to say, no, hang on, stop. You can get off that conveyor belt.

Kate: That’s such a big feeling, even you saying that. That’s such a big feeling because the times where people let you get off the train at the stop you want to get off, and I don’t know. Or even sometimes I find when people describe something really difficult, but they describe it really well, I find I all of a sudden get a lot of like, not control, but like, I can get my get my hands around something that otherwise felt really scary.

Kathryn: I think that’s shining the light of information, isn’t it, into this, into the box of scary stuff. Okay, that thing that you’re frightened of, let’s just get that one out or leave it resting there. Yeah, let’s look at this one. Okay. So you’re worried about taking morphine? Tell me why you’re worried about taking morphine. Let me understand what it is that frightens you. And then let me tell you what science, what medicine, and what our experience has to bring to that, which might help you to look at it more in the round and just that single fear that you’ve got and that might help you to decide not I’m desperate to stop taking morphine, but I’m willing to give it a go and see what happens.

Kate: We’re going to take a quick break to tell you about the sponsors of this show. We’ll be right back. It was such a powerful story of a man who was so worried that as his disease progressed that he would that he would choke. And he came to you? Well, yeah, would you tell me about that?

Kathryn: So this was a really interesting man that I was actually always a little bit frightened of. He was a school head teacher. I think I called him Eric in the book.

Kate: You absolutely called him Eric.

Kathryn: And Eric had developed motor neuron disease, ALS. And he was really, really afraid of the idea of losing control, as many people are, and of being a burden to his wife, who he loved very, very deeply. And so he decided the best thing for him to do would be to find a way to kill himself that would look like an accident, so she would still get the insurance money. So he had a variety of plans, and each time he had a plan, his illness stole another step over him. And he eventually realized that he just wasn’t going to be able to manage it when the day he went out to drive his car into a bridge, he got into the car, he started the car and he realized that his legs would no longer manage the foot levers in the car to let him start and drive away.

Kate: Wow.

Kathryn: And so he ended up living his illness instead of taking his life earlier on in his illness.

Kate: What a great phrase. Living his illness. Like just like walking the path.

Kathryn: And I don’t say that he did it willingly, but the next thing was he decided, well, if I can’t control when I’m going to die, then I’ll control something else. I’ll control, I’m going to make sure the family gets the best Christmas that they’ve ever had. And then we were concerned that he wasn’t actually going to live until Christmas. So this was going to be another loss of control. So the conversation we had was, what is it that’s really important about this? And it turned out that it wasn’t the date of the 25th of December. It was the family gathering over Christmas. So we just did Christmas in October instead. And in the hospice facility where I was working at the time, the kitchen staff turned one of our lecture rooms into a banqueting restaurant for him and his family. You know, silver service, white tablecloths, table decorations, Christmas tree in the corner and all the family dressed up in their Christmas jumpers in October, they must be so hot. And they just had this wonderful end of his life Christmas party. And he sent for me after that. And I, and said you know there’s something I need to tell you and you need to listen. So I was really, really angry with you because when I first met him on a palliative care consult, he was so rude to me because what was I going to do, save his life? What have you got? Nothing. Haha. And gradually, gradually we became a team that was going to work around these difficulties so that eventually he and his family pulled off this great Christmas because he let the hospice team seed that idea to them all. You know.

Kate: There’s such like intimacy in being known, like even in that, that’s wild.

Kathryn: So what he wanted to say was, look, you know I was really cross with you because I thought that you wanted to just get in the way of me taking my own life. And that you didn’t get it. But you weren’t saying no to death. You were saying yes to life. And I get it now. And I’m really glad that I didn’t die then, because I would have missed all of this. So even though he was so much less able by that stage of his illness, he was able to look back and see the things that had been things that he was glad had happened and not just things that he regretted had happened. So, you know, when you were talking before about that space between everything and nothing, I often am thinking with people about what happens to hope. Do everything is a hope that’s pinned on cure. And do nothing is despair. But actually there’s do what you can and let your hope evolve. It’s somewhere in the middle of that continuum, isn’t it? And so what do you hope for if you can’t hope for a cure? Well, you hope for a good remission. You hope for good quality of life, mobility for as long as possible, that your intimate relationships remain intact and loving. And the people who are who matter most to you will be there for you. And gradually you begin to transfer your hopes from you to them, that they will be able to be alongside me without it being too difficult for them. As my life comes to an end, that they will grieve, but they won’t only grieve, that they’ll carry on living and loving and rejoicing in the time after I’m dead. So if you only hope for a cure, You can’t do any of the other hoping, you can’t do any of the other adjusting, and you can’t have any of the conversations about what my wishes and blessings for you are, for the life that you carry on living after I’m not in it anymore.

Kate: Yeah. We have this really beautiful community at Everything Happens and people send us their stories and there’s just a lot of, a lot of sadness around, to be honest, especially men feeling like they want to rush end of life decisions because they’re scared or they haven’t ever talked about it. It’s been very humbling to see how scared and ill equipped everyone feels around that topic when they’re not really sure. Like someone who never talked about anything now has to talk about like, what, they would have to let people into feeling helpless around their grandkids. You are just like a treasure chest of stories of people who made these little fine adjustments and lived into something lovelier than maybe they could have picked for themselves.

Kathryn: Yeah, I think that’s what we observe for each person. As they do their lifting, they make their adjustments at the same time, and they end up in a place that they never would have predicted that they would have been in. And that’s partly because they don’t understand what the process their body is going to go through towards the end of life is going to be. There’s a bodily process to dying. Your body knows how to die in the same way as they supposedly process for giving birth and your body knows how to give birth.

Kate: You have this really careful description of what the body does.

Kathryn: We have bodily systems. We are animals. We’re really, really clever animals, but we’re just animals. And if you watch a guinea pig dying or you watch a cat dying or you watch a human being dying, what you see is that pattern of being unwell, losing energy, running out of energy, needing sleep to recharge energy. And we do that when we’re trying to heal as well. So anybody who’s ever been really sick with flu or something like that, you know, you get really tired, you know, when it’s real flu and not man flu because you can’t actually get out of bed.

Kate: Yeah, is man flu, just to be clear, I like man cold where you suddenly see your husband with a very small illness while you have cancer, say, like put a sweatshirt over his head and then go into a quiet place.

Kathryn: Because nobody understands how he’s suffering.

Kate: It’s really a difficult time for him.

Kathryn: That would be the one.

Kate: Okay. Just making sure that we perfect cultural fluency here.

Kathryn: We’re on the same page. So there’s there’s this physiological need for rest in order to attempt to recover. And I guess that’s what the body’s doing even during dying. It’s attempting to recover. So it’s taking the rest and we’re running out of energy, we’re running out of energy, we’re resting, resting more. We’re sleeping more. Again, for people who like their afternoon nap, this is not to sound alarm bells at all. I’m a big fan of the afternoon nap. This is a sleepiness where it’s just irresistible.

Kate: It’s because you’re saying if people want to take a nap, then that’s how they would know that, that’s not that’s not the scary kind of sleeping.

Kathryn: Absolutely. If you’re well enough to feel tired enough to want to take a nap, then you’re well enough to wake up at the other end of it. So it’s really important that people understand that there’s this process of gradually being overtaken by sleepiness to start off with, but later on by unconsciousness. And that’s different because we notice when we’re falling asleep, but we don’t notice when we lapse into unconsciousness. So at the very, very end of our lives, people are usually unconscious all of the time. So what’s happening now? Well, most of their brain is closing down. And a lot of their organs aren’t working the same way as they did. So maybe their blood pressure isn’t as strong as it was. So blood and oxygen are getting round the organs as well as they did. That’s okay, because the body’s not trying to move around and burn a lot of energy. It’s just lying, being unconscious. So the only bits of the brain that are still really working at that point are hearing and breathing. So let’s do hearing first, because that’s most that’s really recent research, just before Covid, the University of B.C. in Vancouver.

Kate: Thank you.

Kathryn: Published a paper where they had collaborated with a local hospice service and patients had really generously signed up to be part of their study. And they were wearing little sticky pads on their heads that were reading their brainwaves. And the researchers played sounds to them while they were still awake and conscious when they were first agreeing to be part of the study. And they recorded what their brainwave response was to those specific sounds. So they weren’t speech sounds so that there wouldn’t be any mix up in the research. And then as they did that journey down into unconsciousness, every now and again, the researchers would play those noises in the room and just record the brainwaves. They didn’t need to go into the room to get in the way of the family. But after the people died, they were able to analyze what was happening and not in everybody, but in a significant number of them, they could see these brain responses. The brainwaves were just the same in light, unconsciousness, in deep unconsciousness, and really close to death as they been when the person was awake in terms of their response to those sounds. Now, for generations, the wise women have said to us, keep talking, keep talking to your unconscious, beloved person. Because we see them more relaxed when the right voices are in the room. We see them start to be a little bit restless when the wrong voice comes into the room. We know the music that they like or the sacred scripture that they want to have chanted or the prayers that they want to hear, whatever is their tradition. And it’s important for them that their brain is responding in a way that relaxes them by those sounds being present. So that’s really interesting.

Kate: It’s so comforting, I imagine, when, because we lose the, if it’s such a gradual process, I imagine that’s so difficult for the living as they need, they wanted a, I imagine everyone wants a moment like, how do I know then when I get the moment to say things? When I get the moment that, where you lose control of the story that you wanted to tell. It sounds like you can keep telling it.

Kathryn: You can keep telling it. But if you want the satisfaction of somebody eyeballing you and smiling back. Why not do it, I don’t know, today.

Kate: Sure. Now. That’s good.

Kathryn: Because, you know, if it’s okay, you could do it again. Somebody wrote to me last week, she said every year, at the beginning of January, she writes love letters to every person who matters to her in her life. Every year.

Kate: What a great idea.

Kathryn: And she’s recently had the most significant and difficult traumatic loss of somebody very, very dear to her. But she knows that that person knew how much they meant to her because they had 20 something years of love letters. So it can be too late to say, I love you and thank you and I forgive you or I’m sorry, because those are the four last messages. But it can’t, it can never be too early.

Kate: We’re going to be right back after a break to hear from our sponsors. Don’t go anywhere. I’m back with Kathryn Mannix, palliative care doctor, who’s explaining to us the parts of our bodies that continue working until death. Here’s Kathryn.

Kathryn: Now, the other part of the brain that’s still doing its thing is the bit that drives our breathing. So its technical name is the respiratory center and lives just at the top of the spinal cord and the very bottom part of the brain back here. And in ordinary life, we don’t really think about our breathing except now, except that we’re both thinking about our breathing, right, but we don’t normally think about it. But we do manage it.

Kate: Yeah.

Kathryn: Once we’re unconscious, all of that stops and the brain just drives automatic, really primitive breathing cycles. And again, your dying guinea pig and your dying cat will do the same thing. So these cycles go from deep breaths gradually getting shallower and shallower, and then back to the beginning again, the deep breaths. And because we can’t feel the back of our throat by then, you know, that really sensitive bit where the drop of water touches it, the toast crumb, we’ll coughing and we’ll splatter and we’ll swallow, because it’s a reflex to protect our airway. And now that’s all switched off. We’re not feeling our body in deep unconsciousness. So people sometimes in that deep phase of breathing will breathe out through their voice box, through their vocal cords, and they’ll make a noise. Now, if you’ve never heard that noise before, you might think this person is groaning or trying to speak or trying to say something. And I can remember sitting beside my beloved Nana, wise woman who understood dying, when she was dying, and half of my brain is noticing that she’s doing this agonal breathing. It’s a technical term. So the doctor me is noticing that. And the granddaughter me is going, are you alright, Nana? Are you, are you trying to say something? Are you uncomfortable? Are you groaning? And then I’m having to give myself a really good talking to, you know, that this is automatic breathing. You know, she’s safe. You know, she’s so unconscious that she’s beyond discomfort now. Just get a grip on yourself.

Kate: Is that what they call the death rattle?

Kathryn: So, so, so the death rattle is a really interesting other noise. If there’s a bit of saliva at the back of your throat, or we routinely use liquids to clean the mouth, keep it moist, keep it feeling fresh, little bits of that liquid can pool at the back of your throat because if you’re lying in that position, that’s where gravity will leave it lying. So it might be a teaspoonful of fluids. It’s not in the way and we know it’s not in the way because we can hear the air moving in and out of the lungs. But when air goes through fluid, it bubbles, right. So we hear this clicking, bubbling, weird rattling noise, which is the death rattle.

Kate: I see.

Kathryn: And people say, it’s the death rattle.

Kate: It scares the crap out of people.

Kathryn: Yeah, because nobody’s ever heard it before.

Kate: Yeah.

Kathryn: Because ordinarily, if somebody was so deeply unconscious that they weren’t protecting their airway by swallowing or gagging or coughing, we would intubate them and send them to an intensive care unit to save their lives from whatever it was that had made them so unconscious. And here at the edge of life, when we know the person’s dying, unless you’re in the USA where everything is possible and therefore you’ll be intubated and ventilated, the rest of us might say, okay, we’re very close to the end of life now. And this tolerating, this fluid here, tells me that your beloved person is way beyond feeling discomfort from their body. They are not responding to that fluid in the back of their throat. So although it’s a weird noise and it makes us in the room all want to clear our own throats, right, it’s really strange, this noise is telling me that your mum, your dad, your friend is safe. Is deeply unconscious. Is doing ordinary, normal dying.

Kate: Ordinary normal dying. Oh man. We like, we have every we have every account of like, trying to describe birth. And like those 2 million years birth classes, we have so much infrastructure around learning ordinary, boring birthing.

Kathryn: But we could learn from that and we could midwife dying. So by the time somebody’s so deeply unconscious, the death rattle is starting to happen, you’re usually fairly close to the last breath, you know, within hours or a day or so, rather than, you know, sometime in the next ten minutes. People are frightened of what that’s going to be like, so should we send the children out of the room now because the awful stuff is going to start to happen now, isn’t it? Well, so what awful stuff are you expecting? Well, so on soap operas, in cinema, death is always extraordinary because it’s death as entertainment, isn’t it? What actually happens is that during one of those phases of slow breathing, usually, although not always, there will be a breath out, it just isn’t followed by another breath in. It’s simple. It’s gentle. It’s not completely predictable. It’s not what the family is expecting. And all of us who work regularly in palliative or end of life care have walked into a room where a person is dying and they’ve got all their beloved people around them, and everybody’s waiting for the Hollywood moment. And you open the door, you look in and you realize the person isn’t breathing anymore. And nobody’s noticed yet because it was so gentle that it wasn’t obvious.

Kate: Yeah, I like how you can grasp, you do this really nice thing. You’re so nice. You’re like, Hey, everyone, you did it, you were here. How would you, how do you say it? I don’t want to say congratulations, but you’re so nice to people.

Kathryn: Well so, I learned a really lovely phrase from a community nurse. I watched her, all of my bedside presence I’ve learned from nurses and they are so graceful at this. But this community nurse said to this big family, there were people everywhere. And she just said, look at the gorgeous, loving space you’ve created around your mum. You’re doing a great job. This is fantastic. And you could see people kind of preening a little bit, oh the nurse thinks we’re doing really, really well. And the other thing that I learned from this is to go into the room and to comment on how well the patient looks. And it’s unusual to comment on how well a dying person looks. But actually to say, oh so your mom looks really comfortable right now. How long has she looked as comfortable as this? And you can see them go, wait, what? Oh yeah, she, she does look comfortable. And what we’re doing is drawing their attention away from their pain and this sorrow to the fact that even though we wish this wasn’t happening , what is happening for mum is okay. And so they are starting to build their story. It’s making sure that people are noticing the good alongside the bad. And when we sad and when we’re anxious, we have mental filters and we tend to see only the things that align with sad and anxious feelings. So we’re trying to help people to look beyond that. And to put some of the good things into their story as well.

Kate: There can be unnecessary suffering when people aren’t able to be honest. It sounds like one of the through lines listening to you is that honesty can relieve us from some pain or some bad storytelling. Like you had this lovely older couple that you met. Right when you went in, she’s the patient, she’s not doing very well. He’s the caregiver, he’s not doing very well. Both of them are miserable. Tell me about that couple.

Kathryn: So that’s Nellie and Joe, isn’t it? I was invited out to see this lady at home because she was so nauseous and vomiting that she couldn’t actually sit in the car to come see me in my clinic at the hospice. And nausea and vomiting was my special research interest when I was a proper doctor in the olden days. I was invited into the house by Joe, who took me, with his finger on his lips, into the front downstairs parlor, which was so beautifully tidy, not a patient in sight, to swear me to silence. That Nellie didn’t know what was wrong with her, it would kill her if I told her. I absolutely must not let her know that she had cancer. So that’s a bit awkward.

Kate: Ethically complicated.

Kathryn: And it’s a situation that we meet lots. Because it’s always based in love. It’s always based in kindness and concern. It’s not like I want the power to tell her, it’s please help me to protect her, don’t tell her. So I struck a bargain with him, I said, Look, I can’t, I can’t tell her a lie. But why don’t you come with me so that you can hear the conversation? And if she asks me, I’ll answer her questions and you’ll be there to look after her.

Kate: That’s nice.

Kathryn: And if she doesn’t, I’m not going to force anything on her that she doesn’t want to know. Okay, so he still wasn’t terribly sure, but he took me up the stairs, and there’s Nellie sitting in her bed. She’s a gorgeous, white haired, elderly lady with a great big swollen tummy, like a like a beach ball. And Nellie just says to him, have you given the doctor a cup of tea? And he looks really askance. And you know, we know who’s in charge of this house.

Kate: I can’t wait for you to leave this room, sir.

Kathryn: So she sends him down the stairs to make a cup of tea. And as soon as we could hear him going round the bend in the stairs, she says to me, I don’t know what to do. I don’t, I don’t know what to tell him. I don’t know how to tell him. And I’m thinking, okay, so tell him what? I’m dying with cancer and I don’t think he knows. So now I’m in this predicament, and, I think, what am I going to do now? And just as I’m trying to work out what to do, Joe appears at the door. He’s got his tray, teapot, teaspoons, china cups. So he puts that on the perching stool. And I see, Nellie look at this tray, and she says, where are the biscuits? Go and get the doctor some biscuits. So he gets dispatched again. So he’s creaking his arthritic way down the stairs and back into the kitchen, which gives us a bit of time, right? And I think, well, this is a couple who have know each other for a long time. They’ll have resources as a couple. This won’t be the first storm they’ve weathered. Maybe they always do things separately. I don’t know. So I said to her, you know, tell me about how you deal with difficult things as a couple. What’s the most difficult thing you’ve ever dealt with? And she then looked out the window, out of the window to the pit head, and the pit was closed by now, the coal mine. And she told me there been an explosion down the mine and their son had been killed and she didn’t know how they’d got through it. And it was only by leaning in, looking after each other, working together as a team. So she’s all teary eyed when he arrives with the biscuits. He looks at her, looks at me, I can see him going bright red. I think oh god, this is it, he’s going to throw me out the window. Are you upsetting my wife? And then she says, no, Joe, she’s not upsetting me. Sit down. Listen. I’m dying. And he says, who told you? Who told you? She said, they told me at the hospital. And he said, I didn’t know you knew. And then she said, I didn’t know you knew. And I just thought, I’m never going to get a cup of tea out of this. So they didn’t need me, you know, I can come back another day and do the nausea stuff. They actually needed to do that stuff and they didn’t need me as a spectator or as a mediator at that point. So I left them with the tea tray and went back downstairs. But it’s helping people to just get back in touch with their resilience and their coping mechanisms that they’ve always used. Somehow, when a person’s dying, we seem to think we’ve got to treat them differently from how we treat them when they’re still themselves, but not dying. So he wouldn’t have been trying to protect her. He couldn’t protect her from the fact that their son had died and they were in it together and that’s what got them through. So reminding them, yeah, we can do hard things and this is how we do things.

Kate: One of the most common questions I hear or I get, even though I know the one I get and I’m not equipped to answer. I know other people are very good at these questions. Like they’ll say, how do you, you know, especially for people who are very sick, who are parents of young kids there’s a lot of, how do you, how do you make choices around end of life issues when all the choices are bad? And you had this young mom who, I really, really liked your problem solving with her because some of it was as simple as, like, oh lovey those jeans are, they look awesome. And I can tell that you really want to still care about your body and that is absolutely allowed. And also they’re seriously digging into your stomach. We need to not wear those pants any more. I really liked the like letting people be like, don’t I still want to feel attractive? And you got to this like really constructive place with this mom about what she that helped her make a couple choices.

Kathryn: Every now and again in medicine, you realize that your patient and you have stepped over a line somewhere and you’ve become friends. And she was one of the people that that happened to me with. And every time it happens, I go I’m never, I’m never doing that again. I’m just never doing that again. And the problem is you can’t decide that it’s not going to happen because you discover that it has happened and it’s too late.

Kate: Well, crap, I love you.

Kathryn: Ronnie came for a pain consult to the clinic. And she was beautiful. Little bit younger than me. Could have been my very, very beautiful youngest sister, that kind of feel in the dynamic. With the highest heels, the tightest trousers. She did look absolutely lovely and her pain was because she had a pelvis full of tumor and the tumor was pressing on the nerves that come round your bottom and down your legs. And I needed to be able to look at her tummy and examine her tummy. So she needed somehow to peel her way out of those trousers. And the reason they were so tight was that the tumor in her pelvis was starting to interfere with the blood return from her legs as well. So her legs had extra fluid trapped under the skin. So you could see the lines of the seams of her jeans on the skin of her legs when she took those trousers off. You could see the zipper mark over the bottom of her tummy. And my concern was that the pain is because of pressure on the nerves. And, of course, the trousers were almost like a suit of armor that were pressing on even more. But she had a decision to make. Maybe looser trousers would also be less pain in her legs and she was so horrified at the idea of elasticated waist trousers. Because that’s letting your standards go. And if I left my, let my standards go, I’ve got nothing left. And suddenly you realize it’s not about the trousers, stupid. It’s, it’s about, there’s something really deep under here about not losing control. And so this was really a kind of cognitive therapy, first aide conversation. What is it about the idea of losing control that feels so difficult? And you just don’t know where the persons’ going to go. And she said, well, because it means I’m going to die. And of course, that’s not the end of the conversation for us in palliative care. That’s the beginning of the conversation. Okay, so what is it about the idea that you’re going to die that is interfering with your mind so much? What is the awfulness underneath that? And I’ve asked that question, I think probably to thousands of people. And always I’m blown away by the answer because you never see where it’s going. She had a sense that if when I die, I’ll be abandoning my children. And you almost think, well, that’s got to be the worst thing. But I need to ask the next question, what is it about that idea? And she said, I’ve got this picture of them completely alone in the school playground and they’re crying. And I didn’t know what to do with that. And she just suddenly wept. And I’m filling up. And I could hear that that was awful, but I wasn’t sure it was yet the bottom. So as I’m giving her tissues and saying that I can see that this really, really hurts and I’m sorry that hurts so much, but I want to understand so that I can support you. Is there something else underneath that? What’s the worst part of that? And she said, there’s nobody to tell my daughter about periods. And that’s was, for her, the epitome of-

Kate: I’ve left you without a mom.

Kathryn: Yes, I’ve left you motherless. And. Wow, so that was just the that was the bottom of her pit of despair. So we were able to do a really amazing piece of work of thinking about how important it was that she could think about her children being motherless so that she could put the bereavement support materials together for them now, that they would find comfort in after she died. And at that time in my career, throughout my career, in fact, I saw myself as somebody who’s very comfortable at a deathbed. Put me at a death bed, I will sculpt the room. I will make sure that everybody’s found their place and found their comfort zone. The minute that person has died and now you’re doing bereavement, I, I got nothing. I feel helpless. I feel hopeless. I don’t know how to be. I don’t know what to do with that. So where a lot of doctors feel like that about talking about dying. I’m, I’m great till the last breath. But after that, I enter this zone of all these people have is pain. And I have nothing to offer that can assuage that pain. So I have avoided, and certainly at that time in my career had managed successfully to avoid, people doing bereavement preparatory work.

Kate: And it sounds like one of the differences, one has a one has a concrete ending and then the other doesn’t. The grief can kind of just, it just goes on.

Kathryn: It’s you carry it, don’t you? There isn’t a way around it. And when you start to go through it, you realize that you’re going to be going through it forever now, there won’t ever be a day when that person isn’t missing anymore. So onnie said to me, look, doing that bereavement work. You know, I’ve got all the photographs of the kids and I know where they were and what they were doing, and I know I need to put labels on them all. It’s going to make me so miserable to do that. I know what I’ll do, I’ll bring the biscuit tin that’s full of photographs here with me, and we can do my cognitive therapy and pain and stuff and then will use the other half of my appointment for you to support me while I do the bereavement preparation work. And it was the most difficult piece of work I have every had to do. But I’m glad that I did it and I’m glad that she trusted me to do it. So she was able to engineer her way through that by saying, these really difficult thoughts are true. My children will not have me as they growing up. I am going to die. They will be bereaved. Is that thought helpful or is that thought not helpful? And the answer is it’s both. That thought is helpful while it helps me to do the preparatory work for them. That thought was really unhelpful if I’m trying to do mummy cuddle time or bath time or talking about how did you get on at school today time? That’s an intrusive thought that just distorts and undermines my joy in the moment with you. So she learned to trick, which was to postpone the unpleasant thought. So when it came tapping on the shoulder, she’d say, yeah, I know you’re there, and I know it’s true. And I know I need to deal with you. This is not your time right now.

Kate: Wait your turn.

Kathryn: Yeah, it’s not your turn. And so she had a worry book. This is another really great technique. So every time her thought monster gave her another thing to worry about, instead of worrying about it, because worry is our way of making sure we don’t forget to deal with something. If you get a little worry book, you just write it down and say okay, gotcha, thanks. Bye. You can go now because I’ve captured it. And next time I have worry time, which is my appointment with myself once a week to sit down and look at my list of things that I musn’t forget to worry about. Sometimes when you look at the list, you can see three of them that actually, I was obviously having a really bad day that day because they are just not worth worrying about. Just cross those ones right out. And that still leaves me with a few. So which couple shall I tackle today? And so it moves us from being at the mercy of all difficult thoughts. To being the person who’s choosing when and how to think about those difficult thoughts.

Kate: Yeah. Kathryn, you’ve genuinely given me better language and more peace about some really difficult thoughts. And I know you do that for other people. But it is, it’s embarrassing how much I like you. It’s really, it’s lovely. It’s lovely what you do. And thank you so much for having this conversation with me.

Kathryn: Thank you so much for inviting me. I’ve loved meeting you.

Kate: Okay. How are we all doing after that one? But it’s oddly beautiful, right? That it’s never too early to tell people how much you love them. That in dying, your body is doing exactly what it was made to do and that we go to such great lengths to protect the people we love. And that the truth isn’t as scary as we might have thought. Yeah, so that’s a lot to chew over. But before I leave you, I thought maybe this might be an especially good time to bless the crap out of you and me. And this one is from The Lives We Actually Have, a book of blessings, and it’s called A Blessing for Those Who Keep Watch Over the Sick. Sometimes love isn’t enough. It can’t save them. Save us. Save the life we had together. We are finite. And so much is out of our control. So bless the ones with the courage to walk all the way to the edge. Who peer over the cliff, who feel the updraft of the abyss. And who will do it all over again tomorrow. Blessed are the hospital room organizers and question-askers. And the more ice chips please gatherers. The absolutely yes, this hardback chair is perfectly comfortable sleepers. The over-the-top prayers and weekly infusion companion-ers. Blessed are the cool cloth bringers and the wake-up-to-get-the-meds alarmists and the I don’t mind taking you to the bathroom carriers. Guarding others from their own humiliation. Blessed are the ones who stand unblinking into the truth. No matter how terrifying, no matter how life-altering, no matter how inconvenient or unbecoming, no matter how much it costs them. Because this is the kind of love that sticks. Blessed are the handholders and truth carriers. They will walk us to the end before they have to let go.

Kate: Did someone come to mind as you heard today’s conversation? It is its very own love language to say, hey, I thought of you when I heard this today. We love when you share your favorite episodes with your friends and we want to hear from you. What is your gentle wisdom for handling some of life’s most difficult truths? Leave us a voicemail at (919) 322-8731. And hey, because podcasts are very weird, they require that you submit reviews to the algorithmic overlords or else no one will see our show. That’s a very indirect way of saying, hey, do you mind leaving us to review or subscribing on Spotify or Apple Podcasts? It would make a big difference. And thank you so much to our team and our partners for all the ways that they make this work possible. To Lilly Endowment, the Duke Endowment and Duke Divinity School. It supports all of our projects. This podcast reflects a great host of smart and kind people. Thank you so much to Jessica Richie, Harriet Putman, Keith Weston, Baiz Hoen, Gwen Heginbotham, Brenda Thompson, Iris Greene, Hailie Durrett, Anne Herring, Hope Anderson, Kristen Balzer and Katherine Smith. Because I would be nothing without you. Next week, we have a great conversation lined up. Sign up at katebowler.com/newsletter so you won’t miss an episode. I will talk to you next week, my loves. This is Everything Happens with me, Kate Bowler.