Ep 23 - Can We Talk? Opening Up Conversations About Dying

We often find when someone is dying they or their family struggle to talk about it. People may be reluctant to start a conversation or they may want to talk but just don't know how. This interview with Dr Kathryn Mannix shares some stories from her own experiences and offers ways to initiate a conversation, or perhaps a way to be comfortable with letting that conversation go. 

 Dr. Kathryn Mannix is a palliative care physician from the UK dedicated to supporting public understanding and discussion of dying. Kathryn is also the author of two books - 'With the End in Mind' and 'Listen, How to Find the Words for Tender Conversations'. 

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Transcript

Episode 23 - Can we talk?– Opening Up Conversations About Dying

Kia Ora and welcome to The Ending Life Well Podcast. This podcast series for carers focuses on advice and practical solutions for carers who have been thrown into the deep end looking after a loved family member or friend in their last days, weeks, or months of life. 

Our episode today is Can we talk?– Opening Up Conversations About Dying

Denise

Hi, I'm Denise van Aalst, a senior palliative care nurse and educator at Otago community hospice. Today I'll be talking with Dr. Kathryn Mannix, a palliative care physician from the UK, dedicated to supporting public understanding and discussion of dying. Kathryn is also the author of two books – ‘With the End in Mind’ and ‘Listen, How to Find Words for Tender Conversations’. Kathryn, thank you so much for joining us today.

Kathryn 

Thank you so much for inviting me. 

Denise

Kathryn we often find people with a life limiting illness and their family members can be struggling to talk about this together. Perhaps that they're trying to protect each other by not talking about this really big topic, or perhaps one of them finds it just too hard to talk about. What are your thoughts around that? What's underlying this?

Kathryn 

Gosh, it's such a common thing, isn't it? And it's the thing that's about us loving each other and trying not to upset each other, and trying to remain cheerful in front of each other. It's almost as though we don't want to add the burden of our sorrow or anxiety about what's happening to the burden that everybody's already bearing.  Of course, what happens then is everybody carries their own sorrows. Everybody worries about everybody else's sorrows. Everybody wonders whether other people are dealing with it better than them or differently from them, or are they talking about it more? Are they talking about it less? If they don't talk about it is because they haven't understood? Or is it because they're kind of pretending things are better than they are? So there's all these kind of mind games going on? So I think that not talking to each other about it usually is rooted in kindness and love and concern for each other. And yet, actually, it makes it harder.

Denise

It's a false kindness in a way, isn't it? Because I agree, I understand what you're saying that we think if we bring it up, we're going to make it harder. And that's a little bit like after someone's dying, that I won't mention the person who's died’s name because I don't want to cause them grief. Well, they haven't forgotten.

Kathryn 

I think it's exactly that. And also, because the truth is that we all cope with difficult things in different ways. If we just think right now about our own families, everybody in my family would cope with something like this in a slightly different way. And yet, I also know that if we were to open up a conversation, some people would join in more willingly than others. But the conversation that just says, “Guys, can we just spread the cards on the table here and talk about what's happening, what our concerns are, how we're going to lean in, how we'll look after each other, as well as looking after mum, dad, brother, sister, nephew, niece, whoever it is. Let's just think about how, how we'll deal with this as a family. And let's think about how often we'll do this again, of just checking in with each other”. One of the things that was interesting for me after With The End In Mind came out, I got a huge correspondence from families, different individuals saying, okay, you've convinced me we need to talk about this stuff. But I don't know how to do that. Or I'm worried that the family will be cross with me, or what if they don't really want to know. So, there's all this kind of walking on eggshells going on. And then other letters from people saying, I am trying desperately to talk to my family about the fact that I am terminally ill, or 97 and a half. And they keep closing me down. And you know, I want to know that they know what I want. And somehow, they keep changing the subject or saying, ‘Oh, don't be maudlin’. Or ‘Can’t we talk about something nicer?’ So we end up with the sick person in this pretend bubble of everything's fine. And that is a really lonely place for them. And you and I know that because we meet those people. They talk to us and it's an enormous relief that they ask us all of their questions about their illness and how to talk to their families. And ‘when I'm dying, I'm worried about this’. Their families will be absolutely astonished that they are thinking about dying, but they are. And they're doing that in a lonely way because they can't talk to their families about it.

Denise

I remember when I worked in the inpatient unit, I had an elderly gentleman admitted one day and his wife came with him. And he needed a bit of a freshen up. And this couple had been married for 60 years. And they didn't have any children. So it was just the two of them really, loveliest people. And so I took his wife down to our family area to have a cup of tea while I gave her husband a freshen up. And as I took her down, she said to me, “Look, don't tell my husband he’s dying”. She said “I know he is and I'll be fine. But she said, there's no point him worrying about it. So I don't want him told that he’s dying”. And I was like “Okay, well, if he doesn't bring it up, I won't. But if he asks me, how about I come and get you and we'll see what happens from there” I said “because I can't lie to him”. And she was okay with that. And so I go back, and I'm giving her lovely husband a freshen up and he says to me “don't tell my wife, I'm dying”. He said “I know that I am. And she'll be fine” he said “but there's no point in her worrying about it before it happens”. And I said, “Uh huh, I think we need to talk”. And so once he was freshened up, I went and got his wife. And I talked to them both. I said, “you’ve both told me that you don't want to talk about this, that you think the other person doesn't know. And I think that you need to talk. And so I'm going to go out and leave you with some space on your own to talk about this, and I’m going to shut the door. And none of us will come in and intrude until you open the door and let us know you're ready”. And I think it was half an hour, maybe even an hour and the door opened. And there’d certainly been some tears shed. But there was an openness and a comfort now, because they didn't have a lot of people around them. But now they were being open and honest with each other about what was happening. And it's one of my fond memories of feeling like I did the right thing that time. They just needed to know that it was okay to talk.

Kathryn 

Yeah. And we see it over and over, don't we? There’s a story in With The End In Mind about an elderly couple. I went to visit at home, actually to do a nausea consultation, because that was my specialist interest. He opened the front door and took me into the front room, and he was obviously keeping house beautifully, everything was so spic and span, and explain that I wasn't to tell her anything that was going to upset her because he wanted to take the burden and not cause her any worry. And then he took me upstairs to meet her. And he got himself a stool from the bathroom so that he could sit in the room as well, keep an eye on me. And  I'd had a very similar conversation to the conversation you'd had, that I can't tell a lie, “but please come with me. So that, you know, “if she does ask anything you can hear exactly what's going on and you can support her if we do have to talk about anything that's a little bit more difficult than I'm expecting. Because really, I'm here to talk about her nausea”. Try and make it feel safe for him. And she immediately sent him downstairs to make the doctor a cup of tea,  “where are your  manners, that's terrible. The doctors come all the way to visit us and you haven't made her a cup of tea”. And he was hardly out the door when she turned to me to say “I don't know what to do. You know, I don't know how to tell him”. And when I said “tell him what?” she said, “Well, I'm dying aren’t I? And, you know, I don't think he realises. He keeps trying to make me eat”. But the thing that was interesting for me about them was they did have children, but one of their children had died in a coal mining accident. They lived in a coal mining area in the north of England. And she was explaining to me about how they had leant in together as a couple to support each other. It was the worst thing that had happened to them ever in their marriage, in their lives. And they only got through it by working as a team. So she was crying, talking about that when he came back and he thought that I'd said something and upset her and she kind of gave him short shrift and told him to sit down and stop being so silly. I'm talking about Kevin, the son. You know by then I was able to say “Look you're dealing with a really difficult thing now. And you both know about it. And yet you're not doing the leaning in that you would normally do”. And when he says, “I don't know what you're talking about”, she's said “Oh you do Joe, you know, that I’m dying. We need to be able to deal with this”. So a bit like you, I kind of tiptoed out of the room, left them with the tea tray. I told the story of Nelly and Joe, almost as a symbolic story of all of the families I've met, who have kept secrets.

Denise

I agree. And in those families that are able to talk, they have so much more joy in their living. You know that the Hospice New Zealand motto is, you know, Living Every Moment. It's about living until you die rather than about a long drawn out dying. And it seems to me that the families who are able to talk about this actually get to do more of that living. 

Kathryn 

Absolutely right. And one of the concerns that came up in the correspondence that I had, I noticed how many people worried that if we start to talk about this, will it mean, we can't ever talk about anything nice, again? Will every conversation be about this? But what they've discovered is that because you're not having that awkward conversation, where you're trying really hard not to go into any of the difficult places. Now you can if you need to. Or, you know, somebody said to me in the middle of a conversation about how the grandchildren were doing in school or something like that, with the radio on the background. Her mum suddenly said to her, “Oh, this song here, I want this at my funeral”. And then they went back to talking about the grandchildren and the school play and the transport arrangements. So once the lid is off the box, it's okay, your normal life goes on. And this is part of it. It's not a separate compartment that everybody's avoiding,

I think maybe one of the worries is how do you even get into the conversation in the first place, isn't it? It's a double threshold, I think. You've got this idea in your head, I need to talk to my partner, my parent, my kids, my friend about my illness, or about their illness. And I'm almost anxious about how I even mention it. But it always feels as though I need to mention it, talk about it, get it sorted out and finish it all in a single conversation. So one of the things that I found really helpful is to suggest to people that you don't actually have to do anything other than say “Please, may we talk about this at some point?” Because otherwise, you kind of screw all your courage to the mast, say “Right, today, today, I'm ready, I'm going to do it”. But today mightn’t be the right day for them. But to be able to say, “look, you know, I've been going to the doctor's and you know, things aren't going really well. And I'd really like an opportunity to just get you up to date with everything that's going on”. Or, “Mum , I know that the doctor has been talking to you. And I know that you've asked me to be your representative, if you're ever not able to talk about things for yourself. So it would really help me if we could talk about that sometime. We don't, we don't need to do it right now. Because you need to be ready to do it too. But sometime in the next couple of weeks, could we just take half an hour to sit down, a cup of coffee, just talk it through?” So the step one is the invitation. And the invitation means I am prepared to, I don't want to spring it on you, I want you to be prepared as well, and I've said it now. So now I'm not tiptoeing about, not mentioning it the next time. We both know what we're sitting down to talk about. And that is a game changer. So just the idea that you can issue an invitation and leave it there. And now we've said it.

Denise

And so that's those first steps isn't it, you've got that starting point. And Kathryn, I really loved in your second book, Listen, you phrase this as ‘tender conversations’. And when I first heard that I thought it was just a softening because we so often phrase it in our heads, don't we, as a difficult conversation, I’ve got to have this difficult conversation. So we go in, we're on edge, where we're tense, we're going in, feeling challenged perhaps, before we even start. But when you talk about it  being ‘tender conversations’, and you relate this to if somebody's got a, a tender, abdomen, if something is painful, and you’re probing it gently, and you ask permission, so you don't just go, stab, stab, stab at the tender spot, you actually give them an opportunity to say, I need to look at this, I'd like to look at this. Is that okay? And I feel like, if I'm going into a conversation with that viewpoint of it being that tender conversation, I'm going in much more gently and much less on edge than if I'm going into a ‘difficult conversation’.

Kathryn 

Yeah, I think that's absolutely true. And I think for good clinicians, also, the same thing applies, that we need to have sufficient tenderness that we will be vulnerable during those conversations. And that that's okay, rather than coming in with all of our armour on ready to fight it. And so I started calling them tender conversations really as a kind of knee jerk, anti challenging conversations or anti difficult conversations, turn of phrase, but it's turned out to become a far richer metaphor, the longer I've used it, the more I've been able to see that it's about being aware of the presence of pain, just like a tender tummy and the idea that we would just be gentle, but can't ignore. And the other thing I think, is that if we are trying to be helpful, by fixing things, then we're just going to trip ourselves up. Every fix that we can think of, the other person also could have thought of by now surely. This is an intelligent person, they'd be doing that by now, if it was going to help. So the idea that we can come in and say, ‘I really want to help and support you, but I need you to tell me how to do that’. So that we're curious, we're bringing questions. Somebody wrote to me and said “If I could just give my dad are really good talking to, we could sort this out”. And it's almost the opposite of that, isn't it? It's if you sit down and give your dad a really good listening to, you’ll know, what is going on, and what your role in supporting him might be. 

Denise

I love that. That was one of your stories was about Eloise who was in New Zealand, and mum and dad were in the UK and she got a phone call from her mum, about her dad driving her nuts and all the things he was doing. And Eloise acknowledges that earlier, you know, she had felt mum needed just a really good talking to about dad. In actual fact, she had really taken on board some of understanding that she needed to listen. And in fact, what mum needed was exactly that, not a good talking to, but a good listening to. And it was around asking questions rather than telling her things. And you do that beautifully. And can you perhaps explain that a little bit Kathryn? What are the kinds of questions we can ask to draw somebody out rather than going in and saying, “I need to talk to you, you’re dying and we need to talk about it”? What are some of the ways we can ask questions to help bring them to that same point? 

Kathryn 

One of the things that I'm really keen for people to think about is that it isn't that there's a script, there isn't a perfect question. And in a way, the only question you can really rehearse is your first question. Because all of the other questions that we're going to ask are questions that are responses to the answer that the person gives us to our first question. So if our first question is something like ‘Look you know, how much I absolutely am devoted to you. And I want to try and be the best helper I can be for you. Explain to me, first of all, what's going on, what it's like for you? How are things right now? And what do you think I might need to know, to be able to help you?’ And now the ball is in their court, you're absolutely trusting them to decide what to say to you. And so as they say things, our next questions are about checking out. ‘So you'd like me to do this? And you'd prefer if we didn't do that. And when my brother handles things in that sort of a way, you'd be finding that little bit hard. So you'd rather I didn't do it that kind of a way? Do you want me to talk to him? Or is that something you'd prefer to talk to him about yourself? Or I know, you know, he, he loves you, and he's doing that irritating thing for a very loving reason. Do you just want to tolerate it the way it is, because you understand him? You know, don't let me make it worse for you. Help me to know where the boundaries are. Help me to know, what will be the helpful actions. Right now do you want a bit of help? Or a lot of help? How will I know when you want more help? How will we know when we need to have a conversation like this again?’ 

So we're starting not by coming in to say “Right listen mum, we can see that, you know, stuff isn't getting done around the house like it needs to be”. So in the story of Eloise who's actually down at the ferry terminal in Auckland. She's talking to her mum back in the UK, her dad has dementia, she's tried to talk to mum about getting a grip on the situation with dad and how bad his memory is the last time she was home. And mum's taken it really, really badly. But she's learned from that. And so now what she's doing is asking mum to tell her the story. And she's using questions, almost to give mum stepping stones to put the story on to. “So, what is it you've noticed about dad recently? And is it all of the time or just some of the time? And what is it about that that worries you most? And have you got any theories about what's causing that to happen?” So mum is being very gently led through. He's more forgetful, didn't recognize me. Last week, he thought I was somebody from his office. It's worse at nighttime. In fact, this phone call has happened in the middle of the British night. Because dad's internal clock has gone wrong. And he's out trying to sort out things in his greenhouse in his pyjamas, in the UK winter. Mums really worried that he's going to get cold. But actually, that's not the worst thing. And Eloise could have just talked about dad getting cold, giving him a jumper, getting him back in the house. And instead by asking questions about wider things, she ended up having her first proper conversation with her mum, about the fact that dad's whole way of being and his memory are changing. That these are the early stages of noticeable dementia now, and they're going to need to talk to each other, again and again about this. But now they're in a place where they've understood. And that's the other really important thing about these conversations, isn't it Denise, that it's not a kind of once and for all conversation. She's had a beginning of a conversation with her mum, and she's going to be able to pick it up and put it down over time. And gradually they'll be able to work together on it. So that's the other important thing that we always leave it open to be picked up again. 

Denise

Yes, because once you once you've opened that conversation from then on, it's a little easier to pick up isn’t it? You know, ‘how have things been since we last spoke?’, you know ‘what's changed for you?’ And so it's already easier to have those following conversations. So, and I think you've given us some wonderful ideas Kathryn, of just those gentle first opening sentences, which are loving enquiry, rather than a ‘you must’.

Kathryn 

It's very, very easy to fall into parenting upwards. And completely disempowering our parents or aunts and uncles and grandparents, you know, older adults for whom we have a great regard and possibly some responsibility in their aging. So, helping them to stay in their role as our advisors and guardians, you know, the person who taught you to use a spoon as as one of my aunts once said to me. “Don't talk to me like that. I taught you to use a spoon”. Yeah. Okay. That's really important too, that we're not going in and taking over. We're offering support, but we're also saying tell me how best to help you.

Denise

Kathryn, there was another story you shared about Sally who appeared to be in denial about her illness. And when you talked with her family, you know several of them are sort of thinking she just doesn't know that she's dying. But her mum says “she knows, she just doesn't want to talk about it”. And I think that's something that we often see, and I, I've even seen other health professionals say to me, “Oh this patient's in denial”, and when I've met with them and spent time with them, I'm thinking, well, that's what I consider, I’ve called it a healthy denial. They know very well, that they're dying. They're just choosing not to focus on that. And they've sorted things. And often, I find those people have got plans in place. So now they're focusing on the living. And I guess, you know, what's your thoughts? I mean, Sally’s, I loved her brother Andy’s analogy about, he obviously does rock climbing, and he says that if I worry about falling, which would probably kill me, then that's all my focus would be. Instead, I have to focus on each, each step, where my hand is, where my feet are, the grips. I'm focusing on all of those bits so that I enjoy the climb. And I thought it was such a wonderful analogy.

Kathryn 

Yeah, we helped that whole family to be able to move out of a ‘We need to be saying goodbye’. She couldn't bear the idea of saying goodbye. And so I think it's probably important to talk a little bit about denial. Denial is either choosing voluntarily or subconsciously. So you don't really realise that you've chosen to not believe that things are as bad as they are. And some people just spend some of their time in a place where it isn't happening. And while it isn't happening, you don't have to do any of the worrying, or any of the sadness, because it isn't happening. So it's a really, really good emotional coping strategy. So Sally was really interesting, because she did a kind of partial denial thing where she would say, “Well, look, I'm not silly. I know I've got cancer. But the reason I'm so sick at the moment is because I've got an infection in my wound. And once that's better, I'll feel better. And then we can plan our holidays and start our family”. And she was thinking of the names for, for the children that she was going to have, in her long and happy life that she wanted to believe could happen for her. So I think she was probably doing a thing that my friends in Canada, the Waiting Room Revolution people who again, I really advocate family carers going to look at their website, they call that walking two roads. So there's the realism road, where you understand how serious the illness is, the rate at which it's progressing, where you are along the pathway and all the rest of it. And then there's a more optimistic road, a road that says, Oh, well, you know, it might be that bad for some people, but I'm going to be one of the lucky ones, or I'm still in a much earlier phase than that or something that means that I can just relax and not take on the full burden of the meaning of the illness for now. And to be able to get through, sometimes we need to go to the place where the burden is lower. And sometimes to be able to plan, we need to go to the place where we're absolutely dealing with reality. And each place has its merits. So I love the idea of walking two roads. And Sally was almost entirely on the things are better than everybody thinks road. And so the family joined her there. The night she was dying they joined her on that road. They knew they couldn't say goodbye. But they went back through all of their old family holiday photo albums. And they reminisced about all the things she'd done as she was a child, what a joy she'd been to them. You know how important she was as their daughter, for her husband as his wife. Really saying those things that we see are important to people, the’ thank yous’, the ‘I’m sorrys’, the ‘oh, don't worry about that. I forgave you that long ago’, whatever it is. The ‘I love yous’. The only thing they couldn't say was goodbye. But they did the life review, the life appreciation, that was so important for Sally, and yet allowed her to stay on the road that says, I'm going to beat this thing. And she was still saying, “I'm going to beat this thing” 20 minutes before she finally lapsed into unconsciousness before she died. So her family were able to take their cue from her. And yet also able to say the things that were in their hearts that they would have regretted forever, if they hadn't said, how much they loved her, how much they appreciated her, hadn't sorted out any things that they worried about – ‘did I hurt you when I said that, or did that?’ All of that work was done over that previous 24 hours without anybody mentioning dying.

Denise

I loved that her family were able to meet her where she needed to be met. And, and I think that's also an important understanding isn't it, that sometimes we might feel I need to talk about this, my loved one is dying, and they won't talk about it, and I need to. But actually, I might have to talk about that with someone else. I can't necessarily force that on them. But that that story is a wonderful role model for exactly what you've just said, how we can still share those memories. And we can say goodbye in every way except the words goodbye. You know we’ve still done all of those other important things, because that's what they've needed from us. 

Kathryn 

Yeah, and I think the other thing that they did, even though again it wasn't made explicit, was a really important task of helping each other at a difficult time, which was that they were each other's companions in that distress, that they didn't try to solve it. They didn't try to say, ‘Oh, come on, Sally, we need to talk about this properly’. They simply went with the emotions that were in the room and looked after each other. And something I think we want to do a lot in families is fix it for each other. And there are some things that just can't be fixed. They can only be carried. And they can be carried by somebody kind of heaving it over their shoulder on their own, in a lonely way. Or we can be their supporter by letting them tell us all that sorrow, all that pain. And just say, Oh, that's so hard. I'm so sorry. It's so hard for you. I can hear your pain. I wish it was different. I'm not going to abandon you, doesn't matter how distressed you are. I love you. I'm here. Here's a tissue. Do you want me to make a cup of tea? Let's just sit here in this place that is so sad because your person is so sick. Let's just sit here and weep together. This is a safe place to feel those really, really big emotions. And I'm not going to tell you to just get a grip. I'm going to say yeah, it's absolutely legitimate to feel as afraid, as angry, as sad as you feel now. And I'm just going to sit here with you until it's, until this moment has washed over a bit and you start to feel just a little bit less terrible.

Denise

That's a wonderful description of just being with somebody isn’t it? Just being with someone listening, letting them know, they’re truly heard is of such great value.

Kathryn 

It is. And yet we feel very helpless when we're doing that. You know, we're sitting there thinking I could be doing this with them, I could be doing that for them, maybe I should be cheering them up, maybe I should go and do some shopping, maybe I should change the subject, and maybe tell them a joke. No. It's so, so important when somebody has got such a huge emotion, sometimes they're a little bit afraid of how big their emotions might feel, to just say, Yeah, I can sit here in this place with you, and you can feel that stuff. And I can't make it better for you. But I won't abandon you. It's so so precious. And everybody who's had that kind of generous attention from another person talks about it for years afterwards, the thing that helped me most was when my friend, when my colleague, when a lady that I'd never met before on the bus, just let me talk about it.

Denise

It's such a valuable thing as a human to be truly heard. Not, not just our voice, but who we are, as a person being heard and safely held by the person with them. And it can be very challenging to be the holder, but also immensely rewarding, you know, if we can suppress that urge to do, and to fix. Actually, we also will walk away from that interaction, feeling a sense of peace and achievement. And that, we will know that we have done the right thing by that person.

Kathryn 

You're so right. And one of the things that I've learned down the years is, it doesn't matter how many years you've been doing this, you still feel as the person is telling you their tale of woe, you feel all that helpfulness all that desire to fix or soothe, you could feel it bubbling up from inside you. And the thing is not that you shouldn't be feeling that urge, it's that you need to notice it and park it and resist it. And just stay in the listening mode. And you know, 30 something years practice in, I still feel the urge every time. I'm better at resisting it in some situations than I am in others. So when my kids are distressed, that is the hardest, it is so hard not to leap to fix for them. 

Denise

Yes. I would agree completely and I think sometimes we can go into a conversation prepared for it knowing this is somebody who is grieving, and we can go in a little bit prepared. But sometimes it catches us unawares. And it's reassuring to me to hear you say with all your experience that still that bubbles up that urge to fix, to offer answers. And I like that expression of parking it, you know, not necessarily trying to suppress it, but park it, put it to one side for now. Because those things might be useful later. 

Kathryn 

But it's funny almost to notice it in ourselves, as you know, really experienced practitioners who know that the leap to fix is actually the leap in the wrong direction. And hey ho, here we are doing it. So that's that's kind of to encourage listeners that, you know, it's okay to make mistakes also. So I will offer an idea and then I'll say, “Oh, look at me trying to fix it. And it's way more broken than that. I'm sorry. Pretend I didn't say that. Tell me again, how you feeling?” Because it's okay to make mistakes in these conversations. That's the other thing. That generally these are conversations between people who are very fond of each other. If it's a family, then you will have been looking after each other and bumping into each other for a lifetime. So you can carry on looking after each other and bumping into each other during this as well. Just make sure that you know each time you you take a step that you feel is a bit of a misstep just to say ‘Oh, that sounded a lot better in my head. That just landed really badly. I'm so sorry’. Just that awareness, I think is really helpful because we're trying to help each other. We'll mainly get it right. But we'll sometimes get it a bit wrong. And that’s ok.

Denise

And that is okay, isn't it because in the middle of all of this, when we're trying to support somebody we care about. And it might be that I'm caring for my friend who's dying, it might be that I'm caring for my friend who's caring for someone she loves who's dying. And I'm not always going to get that right. And that's okay, because we're human too. And we have patterns of things that we have done with this person, and it will be easy to fall into those patterns of that relationship when this is exactly what you just said, ‘oh, that didn't come out quite right. Can we start again?’ 

Kathryn 

And then that's the other thing isn’t it. We're all human beings. We're all doing our best. Most of the time, our best is alrightish. Sometimes it's fantastic. But sometimes, oh, it's just wrong. And it's okay to be able to own it and say, ‘Do you know, that wasn't, that wasn't the best thing. I'm sorry I said that, or I'm sorry I did that. It was well intended, but it hasn't really helped. Let's have another think about it’.

Denise

And Kathryn, one of the other ones. And we touched on this a little bit earlier. You shared a story about Gerry who was an elderly gentleman who was now unwell. And it turned out that his family didn't know what he wanted. And they acknowledged that. One son said, “Oh, dad tried to talk to me about this, but I shut it down. I told him not to be maudlin” and another son said, “Oh actually, he asked me about being his attorney, about speaking for him if he couldn't speak for himself. And I told him not to worry about it”. And now they were both feeling really guilty because they didn't know what dad wanted. And fortunately, Gerry's wife did, and was very clear about what Gerry wanted. But that’s the value of these conversations in advance, isn't it making a bit of a plan? Before someone's even terribly unwell? 

Kathryn 

I think it would be lovely for families to celebrate, maybe not the zero birthdays where we want to really party, maybe the zero plus one. So 61, 71, 81 by sitting down and having a family meeting that says, aren't you fantastic? You’re, 86 or you’re 81. Absolutely wonderful. We all love you to bits. But you know, you're not going to last forever. What are the things you need us to know about in case we’re ever asked what you would want. So there are some circumstances in which you could just talk for yourself, obviously. But if you got hit by a bus, if you had a stroke, and it took your speech away, when you're dead, and we're arguing about a funeral, you're not going to tell us very much at that point. So what are the things that are important? Have you got any special requests, any things you want us to remember about? And they feel like heavily charged or we're talking about dying kinds of conversations. So my suggestion is, we don't make them about dying. We make them about what matters most to the person. What matters most to you dad? Tell us the things that really make life worth living for you. Because then if you're ever in the situation that Gerry was in, unconscious on a hospital trolley having just been brought in by the paramedics, having had CPR in the ambulance. If I say to the family as I did, look, what did your dad say he might want if he was ever so sick that it looked like he might die, and they just went, Oh, we never talked about that. To be able to say, look what matters most to your dad, which is what his wife was able to tell us, meant then we could think about what the medical options were at this point for him, and apply the ones that were going to kind of wrap around his values and the things that mattered most to him. What his wife was able to say was, “he's been ready to die for a long time now. He's actually a little bit surprised that he's still alive. We argue with each other at nighttime about whether it's better if he dies first or I die first but clearly, he's just about to beat me now, isn't he? And you know, neither of us wanted to be left the widow. But I'm going to have to deal with that. We've been talking about it for a long time. He said he didn't want to spend a long time in hospital, he didn't want to have a lot of medical interventions, he didn't want to cause a fuss”. Well, okay, we can do that. Probably, he's not well enough to get him back in an ambulance and get him back into your house. But we can try and create a home like space here. And the most important parts of home are you. So good, thanks, we understand what matters most to him, we can help you to make it the best it can be. Because you've had those conversations. 

So, I would love to invite all families to have ‘what matters most’ conversations at really important transitions. So, when you leave school, when you start your first job, when you get your first tenancy so that you're paying rent regularly, or you get your first mortgage or buy your first home. When you take up residence with another significant person as your spouse or your life partner. All those significant points in our lives, let's have ‘what matters to me’ conversations, and they are lovely conversations. What matters to me is people I love. It's the great outdoors, it's being able to get up a mountain, it's being able to go on a good long tramp with at least three overnight stays on the way, it's being able to see my dog. Everybody's got things that matter to them. And mostly, that's not about being in hospital. Of course, sometimes what matters is, thinking of an elderly lady I looked after once who had really severe lung disease, she was already on oxygen at home. And she wanted to try to get to granddaughter's wedding in Australia. I knew that this woman wasn't going to be able to fly. So we spent some time thinking about, well, what matters to you most about that? Well, it's that she knows that I love her and I want to be involved in it in some way. So this is before the pandemic, when Skype was the way we communicated online. So they Skyped her into the wedding. She dressed up, she put her hat on. She sent a photo of her wedding to her granddaughter who gave it to the florist so that her bouquet could be based on her granny's bouquet. So she found ways of being involved. And then the next time I saw her, instead of living long enough to get to the wedding, she's “okay, It's not about how long I live now. It's only about the quality of my life. I just want to enjoy living. The wedding was lovely, they sent me wedding cake”. So now rather than living the longest life, it was living the most comfortable life. But of course, that also is a work in progress, because the next time I saw her, the granddaughter was pregnant. So now she wanted to live long enough to meet this baby. And I knew that that was really, really unlikely. So again, we have to think of what can you do that matters most? Well what matters most is that this baby is going to be in the world and that it knows that I knew about him or her, that I was excited. So she knitted. And she knitted blankets and booties and hats and sent them all out to Australia. So she had died before the baby was born. But she had knitted all of her love into these garments. And so she was able to plan ahead for not being there, but for her love still being there. 

Denise

Kathryn, I love what you said just a little bit ago about that, you know, those ‘what matters to me’ conversations, and I love the idea of having those key points, long before anybody is unwell. So that when somebody then becomes unwell, or eventually becomes elderly, it's not well, now you're nearly dying, we need to talk about it. Actually, it's been a discussion we've been having all along. 

Kathryn 

I think it's a wonderful thing to do. And of course, the other thing is it changes over time. So, when we're when we're young, and footloose and fancy free, what matters to us is very different from when we’re in the thick of family life with small children and worrying about the bills and things like that, which is very different from in retirement. And if we've had children, they are young adults, and all of the things that are going on for them. So it's not that it's a once and for all conversation. It's constantly changing through our lives.

Denise

One other thing that I picked up from one of your books that I thought was really lovely, was when you spoke about In-Between-Ness, the place between knowing and not knowing, and how not knowing seems kind and we touched earlier on this about it seems kinder to not bring something up. But it's it's false, because being in that in-between is very lonely. And it's very unsafe. And I was thinking it would also be very, very tiring. Because you would constantly be on alert when you're living in between. 

Kathryn 

So the story is about a colleague of mine, a very talented cognitive therapist, as well as a person working in a respiratory clinic, whose mum was clearly approaching the end of her life. And who, whose big sister could not bear it and was trying to Big Sister everybody into not discussing it, not worrying mum. Every time she came to visit, it was ‘oh, you're looking great mum. Ooh you're absolutely marvellous’. And my colleague needed to somehow allow a conversation to happen where there was a different possibility. And part of the difficulty was he was the resident carer. So usually when his sister came, it was to give him respite. And he would go out for the day, or go away for a weekend. So he wasn't there when sister had these terribly cheerful conversations with their mum. And so he was able to broker and model a conversation when his sister was there. So that as mum said “Oh, well, you know, I feel things aren't so great at the moment” and the sister was leaping into fixing and cheering up and he was able to sit down and put his hand on her hand where she was sitting beside mum's bed and just “So you feel things aren't going so well mum?” And now Mum is invited to talk about what's really going on for her. And the sister is absolutely astonished that mum was completely aware that her heart failure is progressing, that she's likely to die before very long, and wonders why mum’s never mentioned it to her. And Mum is saying “well, because I thought that you needed me to be cheerful”. And so now, because the three of them have been there, everybody knows what everybody knows. And I think that it's where we came in, isn't it, Denise, that all of these difficulties in family conversations are about how much we love each other, about how much we're trying to protect each other, about how much we're trying not to be a cause of sorrow or pain or worry to each other. And yet, the pretending is such an effort. And the loneliness, of not being able to say how we really feel is a real thing.

Denise

But actually, if we talk about it, it doesn't make it worse. It makes it easier. And it's about just doing all that we're doing with love and with kindness and having those conversations with that at the heart will ease it.

Kathryn 

I think also is possibly helpful for people to think about, we're talking about an ideal situation, not every family is ideal. Not everybody in every family gets on really well. That each of us as individuals have many things happening for us, not just this one thing that somebody might want to talk about. And so sometimes we have to be able to say ‘you know what this is big, this is important, and I haven't got the energy this needs today. I’m not the right person for this. And we all need to think about in our family groups where there's a person who is the principal carer. Doesn't matter how much we all say we're going to share it, there will be a person who does the equivalent of the person who carries the burden of household planning, in a very balanced house with young adult children and two adults at the head of the family all leaning in and helping, but one person carries the kind of domestic load of being the planner. In the same way when it's somebody in a family who's sick and needing a lot of care and additional attention. It doesn't matter how much everybody is trying to keep the rota and all the rest of it. There'll be one person. And if you think about the family that you're in, when you're listening, you'll know who that person is. Who's carrying something a little bit extra than everybody else in the organisation of it or being the person who lives the closest and has to respond to crises or being the person’s resident, no matter how much we're coming along and giving them respite. It's their home and their life that has been taken over by this situation. We have to really think about asking them how best to help. Because sometimes they feel a little bit ‘controlly’. And they've become ‘controlly’, because loss of control is too scary. The only way they can manage it is to know where the edges are and keep it all under control. So telling them to relax is not a helpful intervention, asking them what you could do for them so that they could relax a little bit might be the way forward.

Denise

Really good advice, and it comes back again doesn't it ‘ask not tell’.

Kathryn 

 ‘Working with not doing to’ 

Denise

Kathryn, thank you so much for your time today. I know that this will be valuable for in particular the family carers, who might be listening, but to anyone who might listen as well to this, whether it's a health professional or perhaps even a patient, you know that there's going to be things in here that is just going to make opening up those conversations a little bit easier. So I thank you for joining us today.

Kathryn 

Well, thank you for inviting me. And I do hope that it's going to be useful for people who are listening. Thanks, Denise.

Denise

And for those who are listening, Katherine's books I will mention again. With The End In Mind, and Listen, How To Find The Words For Tender Conversations. They're both valuable books that are available in many places, and possibly in your local library, the website Kathryn mentioned also The Waiting Room Revolution is a wonderful resource for patients and carers looking at the end of life. And I thank you, listeners for joining us today as well. This podcast was brought to you by Otago Community Hospice with support from Hospice New Zealand. If you found today's discussion helpful, check out our other episodes of Ending Life Well, a podcast series for carers. And you can find more resources for caring for a person who's dying at otagohospice.co.nz/education.