Episode 30 - The importance of an Advance Care Plan

In this episode we talk about the importance of having an Advance Care Plan in place, what it is, how you go about doing one an why it is so important.

Sacha Langton- Gilks  son DD died when he was 16 from his brain tumour.  Sacha like most people felt ill prepared and ill-informed about how to prepare for the death of a loved one. The experience inspired Sacha to write a book filled with practical advice about how to navigate the unspoken waters of dealing with all that comes with making sure your loved one has a good death.

Although Sacha's book is called 'Follow the child' the book and what we discuss throughout the podcast is equally relevant what ever the aged of the person with the tumour.  In this episode we talk about the importance of having an Advance Care Plan in place, what it is, how you go about doing one an why it is so important.

You can find Sacha'a book here

You can also find information around end of life planning on our website here

You can also contact our support team on 0808 800 4000 or email support@thebraintumourcharity.org

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Transcript

Sarah: 0:38

Welcome to Let's Talk about brain tumours the podcast where we'll be talking to people who have been affected by brain tumour diagnosis, either their own diagnosis or the diagnosis of a loved one. We'll also be sharing news and updates and brain tumour charity about what we're doing to have the harm and double survival. Hello, and welcome to the podcast. This episode be the first mini series of episodes we're doing about end of life. We know this is a really difficult topic and one that unfortunately affects a lot of our community. But we try and be as open and honest as we can on this podcast so shying away from this part of the disease seems disingenuous. My guest for these episodes is Sacha Langton Guilks, he wrote a book called follow the child. Although this book includes the experiences of five parents, their child's end of life, Sacha has since worked with healthcare professionals about how to talk to people about end of life across the age ranges, much of what we're going to discuss in these episodes across the board, from adults to children. So welcome to the podcast, Sacha.

Sacha: 1:35

Hello, good morning.

Sarah: 1:36

Can you tell us a little bit about how you came to write Follow the child to start with,

Sacha: 1:40

I would never dreamt of trying to do something so difficult is to kind of give a book with a title planning and having the best end of life care for your child. I mean, it's just horrifying really, isn't it? But to be honest, I was asked. So the brain tumour charity, their research had shown that parents said they had felt they had no support, no information and felt totally isolated at their child's end of Absolutely, yeah, absolutely. life. And I remember thinking because it was after our son DD had actually died. I remember thinking, That's so true. I know that in hospital, we used to just you would hear that a family had gone home. And you knew that meant the child had died. But no one ever had the nerve to say the word die. And that what that's what was actually going on. And I knew that I had no idea at that, when it happened to us what that actually meant, what happens after that. And that silence was utterly terrifying. So I thought, if I can do this, I must at least try and cut a long story short, I ended up talking to get my husband to come, he normally doesn't want to do I suppose I better sort of briefly say that. So DD was 11 anything like that. I said, I actually really need you there. Because this is going to be so hard. I didn't think anyone would even stay in the room. And to my amazement, not only did all clinicians stay in the room, but some families were there. And I discovered afterwards that one of them was facing that in their beautiful 17 year old daughter, I managed to do it. And that family fed back afterwards via the charity that because of what I've been saying they had managed to have a beautiful death for their beautiful daughter. And I was sort of just overwhelmed really by that. And I thought, well, even if one person is helped, it's was worth it. And I think also making the comparison between you know, you wouldn't, you wouldn't have a baby without doing a birth plan. So why would we think we would have we would would try and approach a death where you want to support your loved one to the best of your ability without doing some planning. I mean, it's just that no one talks about it. That's it. So just just talking about it, we are breaking down this Mount Everest of fear. And then essentially what happened was the sort of press picked it up a bit. And then because the press picked it up a bit, I got asked if I'd write a book about it, and I thought, Oh my God, but actually and then I realised that I couldn't just talk about children with with with brain tumours or cancer, because cancer actually gets a lot more publicity than a lot of the rare children's diseases. So I reached out via the main children's palliative charity that's called together for short lives. And they connected me with four other sets of parents, and one of them was was a family in America actually, because, again, we need global work on all these issues. So and that was also really interesting as families to listen to our each our experiences, and we were in different places in the country or did different things. And because I realised, you know, this book isn't it's not a memoir about my experience as much more practical help. And it was about three years after DD had died. So I had some perspective. I don't I'm not sure I could have done it earlier, actually, because I think years one and two are so so hard the grief. But year three, I was beginning to kind of break down what happened what I misunderstood what I understood, what could have been done better, what couldn't do you know what I mean? at diagnosis, and 2007 relapsed first 2010 And then he ended up having he had a sort of a miraculous remission, which for his type of tumour was, was called on medullablastoma. That is now for different sorts of of brain cancer so you can see how much science is moving, but that led to them His consultant at Southampton consulting around the world. And they all said, if that's the case, and he's gone into remission, that's amazing do us a stem cell transplant, which happened in spring 2011. And then he, unfortunately, it didn't work. And he died during London 2012. So and when he was 16 years old, so that's a sort of zoom through what happened. And the protocol he had to do involves six weeks of radiotherapy to the brain and spine, and chemotherapy. And then 56 weeks of combined chemotherapy, 14 months, which i i Remember, miss it miss hearing my husband, he said, I thought he said 15 weeks, and he went no, 50. And I just thought everyone had lost their mind.

Sarah: 6:13

Yeah.

Sacha: 6:14

Why would you do that to a child? So yeah. And then unfortunately, because the early diagnosis campaign Headsmart didn't exist in 2007. I didn't know the symptoms. So we were effectively very late to diagnosis. And that involved 10 Extra brain operations on top of all of that, so you can imagine. And it essentially involved a very bad piece of, or very dodgy piece of brain plumbing, as the parents used to call it call it a shunt. I'm like shunt what are they talking about, you know, the difference in language between doctors and parents. So it's a shunt, and that caused so many problems, but we sort of muddled on through so that sort of medically is what we were doing. But in terms of the kind of person he was, he was a passionate environmentalist, he left all his money to the the WWF, his Jelly Bean collection to his nine year old sister followed the teachings of Buddha I was told off if I said he was Buddhist, no. So it's kind of I would then say Buddhist light, lite. But actually, that meant that he learned to meditate, which when he was having bumped operations was incredibly helpful, because you don't have any control. But that gave him some sense of control. And it also, I feel, so as my husband, he did the Buddhist sort of attitude to life, which is he would say often, life is suffering. But every second is a miracle. He would talk about not desiring things and wanting things, you know, because that was a sort of Buddhist, if you can get yourself in that space. So it meant that he accepted that he was going to die a lot sooner than my husband and I. So I'd be listening to this through gritted teeth going, I can tell you why you can put your Buddhist but for him, you know, my husband since got quite interested, you know, it was incredibly helpful that framework. And it did mean, he said, I have no regrets at the end of his life. You know, I think I hope I can say that, when I'm in that position, I hope I can behave as well as he did.

Sarah: 8:25

Not many people can say that.

Sacha: 8:27

That's right. And he also his ambitions would have a girlfriend go to university, and obviously he couldn't fulfil them. And he did speak out to the media when he was dying. So it was sort of front put front page, and then it went to international because basically, he openly said to the media, I'm kind of stuffed now. But hey, you can't win them all was what he said. And of course, that just freaked everybody out. So and then because he wanted to prevent the suffering and endless complications that he'd had on top of his treatments, including possibly his death might have been avoided if we'd known what to look out for him getting there early enough. But obviously, I can't prove that he wanted other people, other young people, anyone, anyone to avoid that suffering by being early diagnosed. So he massively talked about head smart and all the symptoms, awareness and which so we literally cut the diagnosis time by about 50%. It was quite extraordinary. So I'm so so proud of him.

Sarah: 9:26

And one of the things you talk about really well in the book is the need for advanced care planning.

Sacha: 9:32

The sort of planning bit because I said follow the child but it's I realised that not only do you not want to go through a death with your child, it's like it's like a horse refusing at the last fence. I don't want to do this. I can't do this. I'm terrified of this. Because he would say what he wasn't needed. I was basically given one thing to do after the other, you know, can I have numbers for tea? Yeah. All right, then, you know, I feel a bit sick now. Can I have some anti sickness? Okay, so, you know, I basically did what he told me he needed. You think that you should know what to do on somehow there'd be some framework that you would put on to it, but of course, everyone's different. So you end up responding to what that particular individual needs, what is important to them, and making everything you do at the end of their life. Be focused on that. So anything that was Going to what he loved doing was basically looking after his bees, animals, making delicious foods. So obviously, if he was feeling sick, he wouldn't want to eat his delicious food. And that would really make him miserable. So anti sickness, top of the pile, you're following the need. And I think, looking back, the main blocks for me is I was kind of lucky that he was like that, that I was forced to articulate and talk about it with him because he said what he wanted, I don't want to go to hospital anymore. So that means it cuts off a lot of treatments. So palliative chemotherapy was then not possible, because you need to have blood tests, you have to have scans. He's like, I don't want to play anymore. It's like, okay, right. So that's off the table, you end up tailoring to the person. But I know that because of my and my husband and in fact, any other parent, in fact, actually anyone I've ever spoken to since about this was, because nobody said at the beginning. He didn't explain that palliative care is just the care that wraps around an individual that tailors the treatment to that to them. And it's what manages their comfort. Yeah, I thought some when the palliative care nurse first came in, which was in our first month in the hospital at Southampton general in 2007. And this woman comes in it's written on her lanyard, and I'm just furious. I'm like, Why is she talking to me? You know, my son's not dying. I wouldn't speak to her. And that's what we do. Because no one had explained that. That's not what it means. They're not trying to tell me without saying the word die, that your son's dying now. Yeah, but that's what I thought it meant. So I wouldn't speak to her. And of course, I keep saying to doctors, you must explain that palliative care has got children particularly they are on palliative care, they are having their symptoms managed for their entire childhood, and then they transferred to adult care. And actually, the data now is is very clear in research for adults. If you get to palliative care and in make sure they're involved very early, you will live longer. You will feel you have you can advocate for yourself that I heard it first from Atul Gawande. He wrote that being mortal, and he I can't remember what kind of doctor is but I know that he says he wrote that book because he didn't understand what palliative care teams did. And he realised they have totally different goals. They can't cure things. Usually. They're trying to make sure that person has can live their life to the absolute max every single day and you just got you know, how's today don't know when I'm not feeling so good because I can't eat okay, what what can we do about that?

Sarah: 13:10

It's a totally different thing. And I think you're right that for most people, they see palliative care is of that square someone. That's what happens when somebody is going to die. And it terrifies them because they think that this is a way of somebody saying I'm dying or my loved ones dying, without saying exactly that without telling them is that like a sort of this is this backdoor entry. This is what they're telling me without making

Sacha: 13:34

it up on this by it. So I said that. And that's what I said, doing it like that you've got to be much more upfront and explain what palliative care can do for you. And it's not about that, please don't do. And I mean, the stat that absolutely staggered me was Atul Gawande then did it as one of the wreath lectures. And I think it was in one of the comments at the end. And I remember him saying there was this famous trial in 2010. And he and and basically the people who they did to the control group who just had the oncologist and then and these were people with like stage four lung cancer or something. And the other group got a palliative consultant with the oncologist radiotherapy as well. And the ones that had the palliative input. They lived 25% longer, that people said they felt they had a good quality of life that they are engaged with their hospices earlier. Nearly all of them didn't do the the palliative chemotherapy that was offered because it's not curing you. It's trying to trying to buy you a bit more time. But then it depends, of course, like what kind of time are you wanting? What do you like doing? So most of them didn't do it, and they live 25% longer. That just blew my mind.

Sarah: 14:42

It's incredible, isn't it? And I think more people if they understood that would probably accept that help earlier?

Sacha: 14:48

So you think so what I thought in that moment? Well, I'm like, I don't know any of this. And I'm refusing to speak to this poor nurse. He's trying to talk to me. I thought it would have meant that if I'm engaged with her if I engage with palliative care services and asked for palliative input to the multi disciplinary meeting, which is basically what you should do, and you kind of have to push because the trouble is a lot of specialist doctors don't know what the palliative care teams do. So they say things like I've had, I'm quoting a friend who tried to do this. Oh, we're not there yet. You know, in organ failure at death's door, so it's it's not time yet. It's like no, no, that's way too late. You won't have done any of the planning. Don't do that. And actually, that friend of mine is totally changed this young person's life who's in their mid 20s. And they're at work. And because they have got a palliative consultant that coordinates between all the other doctors, you know, his, he's not trying to do it or his mom. And it's just that understanding that the doctors unfortunately, try to shut the conversation down because they think that they should define hope for their patient and survival. And this, to me is the sort of nub of it. If you define hope as survival, then the doctor thinks you mustn't be clear that you really are quite close to the end of your life, right? So then, then the patient thinks, surely, if my husband or my child or I am at the end of life, the doctor would have said, right, and when they don't use you feel guilty for thinking it, and then you mustn't give up, you've got to be positive, you get all of this narrative that's constantly in the media, that you're a loser, coward who hasn't fought hard enough, you've given up and that's why you've died, which is crazy. Absolutely. We don't have cures, you know, my son's, you know that the medullablastoma, is now like four different sorts, and we don't have treatments for all the different do you know what I mean?. So it wasn't his fault. It's not your fault. Nobody ever gives up, not the patient, not the family, not the doctors, it is the disease's fault, do not allow yourself to feel guilty for one nanosecond. And that's the thing, I've realised that by narrowly defining hope, just a survival, you are closing down, being able to do the things you want, there are people you probably need to see things to things that you want to do. There's certainly practical stuff that if you don't have it around on the house, you are aiming for so much stress and crisis right at the end. And I know friends who've been in that position, and it literally has broken my heart. And that was because in those cases are two very dear friends of mine. And the husbands. Again, people think I I'm giving up and my wife doesn't want me to do that. Therefore, I'm going to say, I'm not going to discuss dying. So then the wife thinks, Well, I can't cuz he doesn't want me to. So she then feels guilty that she's wet parents think that their duty as a parent is to that protecting their child is not letting them know they're going to die. And the awful thing is when I hear nurses talking to the psychologists at some of these conferences, the nurses going What do we do the parents have literally forbidden us from talking to their child, the child is talking to us the nurses going, please, can you get mom and dad to talk about this? I want to talk about my funeral and my digital legacy. And I want this I want to have everybody in pink or not. And the parents are like, Don't you dare talk to my child. It's so hard. And so this psychologist was very interesting. She just said, you just have to try and take some time, make as many cups of tea over as many days or weeks. And you break down what they're most frightened off. Until you can reassure them that that fear we can do this. Don't worry about that. Because we can do that. And I think if you realise that your child's actually wanting to do things, I mean, I know how I'd have felt if I found out after DD died that all he'd wanted to do was meet his granny for an ice cream on the beach. And I'd refuse to allow that to happen. Because you didn't it's just such a jumble. Because you think you're protecting your child, your child's trying to protect you, your husband's trying to prop it up. And everybody goes round in this crazy thing. And it's just like,

Sarah: 19:11

it's it's a crazy thing, isn't it? Because I think people think we talk about and we start planning for end of life. That means we're giving up I remember hearing it one person sort of saying, I've written my will, but I haven't told anybody I've written my will, because that will freak them out because they think that I've accepted death I'm giving up but I'm not giving up. I'm just taking the practical steps that I need to take that make sense for me to take because at some point, we're all gonna die, you know, so we should all be having those plans in place for what happens to us, you know, and what we want to happen to our stuff.

Sacha: 19:47

I've realised that hope is not a narrow idea. It's not a narrow concept. It's wonderfully complex. So in the sense that so I was listening to a mom talking about some research that's been done at the moment about families experienced end of life and this mom was really surprised that even though this young person had accepted and knew they were going to die and DD was like this. They were planning for the future. And she this she found kind of mind blowing. And I realised now that just because you're accepting you're going to die doesn't mean that you can't have hope for the future. And I know so you've basically got to concepts that are seemingly contradictory. So you're simultaneously accepting and knowing you'll die soon, but you are planning for the future. That is normal. And I, I came across a quote from this book I'm reading at the moment. It's this amazing Ukrainian writer and, and the quote is, I've realised now that hope almost never goes together with reason. It's something quite irrational and instinctive. And I think that's the bit that plans forward. And then literally at the same time, I was reading about Bowel Babe Deborah James's, the husband writing that article, and he was talking about her rebellious hope. And so I'm quoting him for that article, she allowed herself to dream about what could happen next, one more trip to Ascot. One more mouthful of sushi, you see, so she was publicly saying, I'm going to die, I'm having palliative care dududa, but she was also doing that. So I think when you realise that you, you don't have to just go denying you're going to die as not, don't have to frame being positive, just as being in denial, you can be both and that is totally normal. And then he goes on to say that it was the most mind blowing and magical moments of our lives, some of them, of course, and I would concur with that we have some of the most extraordinary times with DD. There was one time when he someone had sent some owls and birds of prey because my son was passionate about them. And he sent this trainer who kind of helped with the Harry Potter films, he arrives in our kitchen, and he's flying owls around the kitchen. I mean, DD sister was nine, she was like, wow, you know, and it was, we had some of those mind blowing limits. And the thing is, if we'd not accepted that the we needed to, we did have time was short, you never know quite exactly how long like with a baby, you never know exactly which day it's going to show up unless your having a cesarean , but to absolutely refuse to do any planning means none of this can kind of happen. And that then you get regret, loaded onto grief and grief is hard enough. Anyway, I think I had the fear of the process of a normal death. Bunged in together with fear of the grief, how on earth am I going to cope with my child or being anymore how on earth, but those are two, they're obviously really totally related. But they are not the same thing. So you're grieving from the minute someone says that your loved one is going to die, because suddenly the life that you figured was going to happen, it's not going to happen. And that is a thing. And I didn't know it was a thing. I just thought I was being pathetic. But it's called anticipatory grief, the bereavement teams in the hospices can help you brilliantly. And there's some fabulous organisation in America called courageous, courageous parents network CPN. And they do little video clips of a psychologist talking to parents in this situation, you can watch it on your phone, they explain what it is, and how, you know, the problem is I didn't know that. So I'm thinking, Oh, my God, it's his last birthday. I can't do this. I'm you know, and then I thought, you're now sitting crying by the washing machine as usual. And you should be out enjoying his party, not wrecking the time, because you're worrying about how you're going to cope when this happens. So you need to try not to do that, because there's nothing you can do about it. So just go and enjoy the party.

Sarah: 23:37

Did you find that having an advanced care plan, helpful in giving you things to focus on instead of focusing on all of those things didn't help you to start moving forward in a way of having things more ordered and thinking about the future in that way?

Sacha: 23:57

Totally. Because the thing is, I think, I realised what the planning gave me was peace of mind. So we did the planning with the clinical nurse specialist for paediatric palliative care, but also there'll be a nurse specialist for palliative care if you're an adult we asked her to come to the house, so you can do it. You can do it wherever you want. You can meet in a cafe with this person, wherever you feel comfortable. If you can have somebody there who you know, I mean, if you know that, as I didn't know that's not a that's definitely helpful. DD didn't want to be there because I'd really reassured him that we were going to have all the medical because people think palliative care is stopping treatment. No, you're doing tonnes of treatment. It's just not curative. Yeah. So again, that's the only thing you think you're giving up. You're stopping treatment just going to stand around going right or going to die. No, absolutely not. There is lots being done lots to manage the comfort of your loved one. The thing I primarily remember is the enormous feeling of relief for getting my fears off my chest, the weight of it afterwards, I realised just how much it had been oppressing me. And I think most mine are probably like everybody else's, that my child is going to be in pain, they're going to be alone. Going through the things with the nurse meant that I could make sure that those things didn't happen, so pain, and of course DD had spinal tumours, millions of them, those are painful. Millions of brain tumours all over the place, which meant that all his messages were getting muddled up. So basically, he had dementia, short term memory loss, then long term memory loss, then total memory loss. So Again, but nobody would would say that they would never say the D word of dementia. To me, it's like, well, it's not not happening just because you're not telling me Yeah, I as a parent shouldn't have to say he's obviously got dementia. So it would be helpful to have a nurse around who's used to dementia patients. We were just lucky we got someone who had done adult nursing and handled was very used to what helps with dementia is doing. But pain wise. I haven't realised you know, there are pain clinics in hospitals. So I say to friends who ring up and say my husband's in pain I say Well, if the medication is on is not working, you need to call them and you know, either you change the dose, or you can change, there's lots of medication they can try. Don't give up, don't accept what's happening. There's lots of different meds, I think we were on fentanyl. oramorph. Obviously, we'd started with the baby stuff like Neurofen and paracetamol and codeine, and then we then we packed into the big boys where you have to kind of sign for it specially. Honestly, it was like a pharmacy in here. So and I tell you what, given the amount of pain that he could have been in, he was not in pain. He was not in pain. And actually, ultimately, I asked, I didn't have the nerve to ask a doctor this until afterwards. But I remember saying to a paediatrician years later, I said, Is there any type of pain that can't be managed, and he gave me a really old look. And then I realised, it's because, of course, they can basically knock you out, they can render you basically unconscious to stop pain. So you're always in a process of sort of a trade off. So I don't want to be knocked out, because I want to see my best friend for tea, have another sushi, as Deborah James call it. So you're in a negotiation of how much pain you're prepared to be in, depending on what you want to do. Okay, yeah. So but even knowing that he could be knocked out meant that if I'd known that at the time, that would have been helpful, because that was the sort of bogeyman lurking at the bottom of my water tank. I was just like, Is there gonna be pain that I can't? I can't, yeah, we can knock him out. Totally. Do not worry. I don't think I need my Well, I certainly need to know that.

Sarah: 27:25

Did you? Like you mentioned the fact that you started this that DD wasn't involved in this care plan? In hindsight, would that be one of the things you'd have wanted him more involved in it start?

Sacha: 27:36

No, because he was too busy. He wanted to be out doing his bees and what he was worried about. A, we'd had this was, this isn't something that happens in a short, you can have as many conversations as you'd like. It's usually not one conversation, it takes time to process the shock, and have an understanding of what's likely to happen. Because that's the other thing is like, how for this type of tumour, does it normally proceed? And then what do we do to manage this? You know, I'm making it sound like it was just I think

Sarah: 28:05

that's a good point. Actually, what a care plan is, it's very individualised and that everybody who has their care plan done, it will be done with their nurse around their specific needs,

Sacha: 28:16

and timescale. So when, because you can't take it all in one go. There's just no way. And so by the time I sat down lots of it had already, I already knew what DD wanted, because it didn't come out over a month. So he had come that the night we got back from hospital where that was it, and it was the second relapse, and there were tumours everywhere. And there were no, there was no more curative treatment anywhere to be had in the world for any price. You know, DD you said am I going to die? And we all went? Yes. Yeah, that was horrific, of course. And that night, he came back and he came in about 11 o'clock at night, as I was trying to switch the lights off and went, why can't I just take a pill and die now if I'm going to die, because he knew what was coming? Because obviously he'd done it twice before and then clawed his way back. And I thought, well, that's a very good question and I would be asking the same thing.

Sarah: 29:06

How did you answer that?

Sacha: 29:08

Yeah, I was thinking

Sarah: 29:08

for anybody. The worst thing that somebody can say is

Sacha: 29:13

and of course, I'm like, it's illegal going through the like, House of Lords blah. You know? Basically, you're because he said, why he meant he said, Why can't my oncologist Give it to me? I said, Well, he's not allowed, you're not allowed to full stop. Somebody was up there looking out for me, because I suddenly realised he needed to be reassured about the process. So I'm like, Well, do you remember the last three times you were nearly dead? I mean, really, and he looks pretty shocked. I can't believe I actually said it, actually. But it was the right thing, you know, pretty shocked. And then he went, Well, no, I went, That's it, you are not going to know, we're going to have all medication required to make sure that you are always kept comfortable, so that you can enjoy what you liked doing, which is number one on the list. So he wanted to have a party with all his friends. And he went okay, and then he left. That's what he needed to know. So he he because he knew that he told me everything he wanted. He didn't want to waste his morning. He hasn't got many mornings left. He wants to be out with his bees and chatting to his mates on Facebook. So he left me with the nurse going through. I was I was worried about the seizures as well because because we've never had seizures before. And then she showed me this whacking great syringe and I'm like I've never done that. So she took it out of its packaging how to work it and she said, if it doesn't work, give it five minutes. If that doesn't work, you might have to call an ambulance so they would come and stabilise him. So I knew what to do if it didn't work and who to call. And I said, I don't want the ambulance to take him to hospital because he's said made me swear he won't have to go back to hospital that is literally the number one top of his needs at the top of the list. And I said, I know that if you call an ambulance to your house, they have to take them and she went, No, they don't not, if you sign this piece of paper, and I'm going to put it on the ambulance, IT system, there's a red flag on your address that they will come and they will do they will support you. But they will not take him to hospital.

Sarah: 31:12

And I'm really good to know, I want to know that they can do that that. And that's one of the good things about doing something like an advanced care plan is those the very things that you can specify, and there are processes for

Sacha: 31:27

if I didn't know, and we'd been hauled off, you could have died by the side of the A 30 What's your place of death, the side of the I cannot think and I know people this has happened to and it's just so doesn't, you know, you want I wanted calm and comfortable. I wanted no stress. And do you know what, because of being able to sort of being unable to have these conversations, we did pretty much do that. And and that's why I'm so passionate about it. So that was a massive one for me. And the other one was I didn't want anyone to come to the house, if he'd gone to heart failure and stop trying to resuscitate him in front of my other children when it would have been absolutely for him with his disease completely against his best interests. So sign that bit of paper and I was like, oh my god, the relief. So as you say you're sort of its peace of mind, the things that can go wrong. Of course, you can't cover every option like with a birth, you know, things do go wrong. And the other thing is to have the point at which he couldn't swallow. We had injectable medication here that is bound to happen at five o'clock on a Friday on a bank holiday. And then you're in real trouble. And having the right equipment, you know, we needed to commode we needed a special bed, you don't want to be trying to get that on a Friday at five

Sarah: 32:44

And the things that you need to be planning for because o'clock. the good and bad thing about this disease is there is some knowledge around how the disease progresses, how particular tumour time progresses, and what those stages are likely to be. So you can to certain degree, start planning those things in so that if you're reviewing that care plan with your healthcare team,

Sacha: 33:09

the great thing is I of course had never heard of the word until like years after DD died. And I thought they said advanced with a D on the end like I'm so advanced I couldn't. The doctor was laughing like no advanced adding before I before they have yet they have this language and then, but they don't actually explained to as long as I keep saying to them, anything with the word plan in the title when you're faced by this is really reassuring. So please say what it is that you're actually doing rather than sneaking it round me Do you know what I mean?

Sarah: 33:41

Because it's so helpfully said it's so helpful to know you've got all that you know what's coming, even though you may not want to know you may be like I don't want to face that this is going to be what's coming around the corner, actually knowing those things, and having a plan in place so that you are prepared. know who to call and know where to go know when to get those things in place. So you're ready for when you do need it. And it's not a scramble at the end, and you're not

Sacha: 34:08

scrambling and distress and pain. Oh my god, it's just you're so stressed. Because I mean, as you say, they are the worst conversations you will ever have. I mean, but I remember saying to a doctor to Why don't you talk about this only. Oh, but we didn't want to upset you more. And I'm like you can't. And actually if you don't give the information I need to support my child, my biggest fear is I'm not going to do what he needs. And I'm going to let him down at that I can't live with seriously. And then the other one is like, Oh, well, you're articulate, and you can talk about this. You want to talk about me? You mad. Nobody wants to talk about the death of the person that's most precious to them in the entire world. Are you crazy? I said I don't want to but I need to so I don't let him down. Come on, you know we can do this with death. It's

Sarah: 34:56

and I think you're right it takes away the stress of it. just But also it takes away some of the guilt the inevitable guilt that happens when anybody dies you know, regardless of who it is or what they die off the people that are left behind always question second guessed, did they do enough? Did they do the right thing? Did they? You know should I've done this? Should I have done that? Whereas if you've got all of these things planned in advance, you you know that you've done the best that you could have done and it removes a lot of that if only I'd known about this If only I'd known about that. Why didn't I you know, because there's nothing worse than after somebody's died, people telling you all these things that you could have done, or that you should have done? Or did you ask this or you hear other people talking in bereavement groups or whatever, and you're like, I didn't last that I didn't know you could do that I didn't. On top of you the grief, you're feeling, you're now having this load of kind of guilt thrown. But of all the things you didn't know, and that you didn't do, and that

Sacha: 35:56

he was, and I think, and so I describe it's like, it's like, if you don't do the planning, it's like putting a massive payment on your credit card. Not having asked what the what the interest payments are going to be, and then you're going to have to pay, and it's going to be just colossal. I mean, so it's as you say, it's that. And mind you I did get sort of because of course I did exactly that I should have I should have gotten to the hospital earlier, I should have done this. And I'm a psychologist at one of the the conferences thing. You've got to get to know good enough, you did the best you could with the information you had on that day. I know you've got other information now. But don't beat yourself up. It's not your fault. It's the disease's fault do you want I mean, absolutely. So as you say, it's sort of the whole I love the way the I came across this American nurse who calls it the advanced care planning process, name it to tame it. I thought that was utterly brilliant. And I just thought that was such a sort of constructive way of approaching and also the, the other things that that I can't because we would have liked to have donated organs DD would have loved it he was mad on, I know it sounds this sounds very strange. He was mad on the environment. So of course, he was passionate about recycling, I was always making me recycle all the stuff we took hospital and he check however drugged up or in pain Have you have you taken that drinks bottle home so he we can recycle job. So he for him to have recycled his organs to help another child, he would have loved that. But of course, unfortunately, if you had a lot if you have chemotherapy and cancer, you can't. But I discovered afterwards from another mother, whose child had done even more treatment and him that you they donated their daughter's corneas to another child, and that gives them huge pride. You know, as I say, you're sort of things that give meaning to your child's death and life. I thought I didn't know that, you know. But the thing is, again, if you haven't had these conversations, you can't suddenly decide to do that. The day after they've died. You have to tell your team, they have to make preparations. So that that will actually practically work. Yeah,

Sarah: 38:02

and we hear that from from people who don't know about brain donation, because, you know, because they think of organs. But brain donation is so vital for fighting brain tumours, understanding, you know, the disease progression and standing the disease to find those cures. But like you said, It's no good waiting a week after you need to have that in place. Although it's and it's one of those conversations that nobody wants to have with anybody, no one wants to say, Would you be prepared to do this, but actually, anybody who's gone through this wants to do whatever they can to find a cure so that nobody else ever has to go through this.

Sacha: 38:39

And funnily enough, that it was just coming. We were just before that was possible, I would be prepared to make a very good bet that my son DD, he would have done that, because he was mad on science that he would have donated his brain. And in fact, funnily enough, I know the mother of the first child that did that, because she had read my book because I, when I was writing the book, it was possible I knew about the brain banks, I knew you. And I remember thinking, Oh, my God DD would have done this. And she contacted me because she had got my book and read it and donated their child's but and of course for them, because it was a DIPG that there's no cure. It's like for them that is massive, you know, so I know it's like, sounds so gruesome, but it but it's not. It's not well, not from from our perspective as parents, it's not no.

Sarah: 39:21

Yeah, absolutely. And I think the thing about the advanced care plan, as well as it's not just about medical stuff is that you can put lots of other things in it about how you're going to live. Because knowing that, say for example, your loved one on their bucket list, they've got things to do. Part of the advanced care plan is how are you going to be able to do that it's enabling us to what medications Gee, what equipment you can read, and you can need specialist equipment to be able to go to that place or so it's enabling somebody to live a really good life it's almost like dying well, isn't it is, you know, you're dying. But there's still all this living that you've got to do before you want to do before that actually happens. So how can we make living as well as dying as good as possible?

Sacha: 40:05

That's so funny, because I actually wrote out the psychologist I keep talking about it's called Dr. Jan Aldrich, and she wrote this book called Living with a seriously ill child. And she quotes a young man so he must have been his late teens I think, and his mother the next the morning after he died found he'd written this poem and and the last line was, don't wait until you're dead. Get a life.

Sarah: 40:27

Yeah.

Sacha: 40:27

It's like, you know, and I read the obituary about a six year old little boy in America and and he had been able to talk he talked very clearly about so you do sort of assume that a young child wouldn't be able to very clearly about what he wanted his parents started to jot things down. And and he'd said, I want five bouncy castles because I'm five at my funeral. And I would flaming arrow going to thoughts, if you've watched some movie where some mythical thing I thought, you know, you know, people sort of think that, as I say that children in many ways, wiser than we are. And I think that's why I was able to do what I did was because DD had a wisdom that frankly, I didn't, you know, and I learned a lot from him and other young people in his situation. And I do know that it's that probably the most valuable thing I can say is that I thought I couldn't do it. But I realised that a people have to know you're not alone. You know, if I can do it, you can do it. You know, I'm not a healthcare professional in any way. And I'd have another mother had been in situation we were both with, with her little boy was six with the same cancer. And I thought, if she can do it, I can do it. And I remember her saying to me, Look, the death was okay, they stopped suffering. The grief isn't the grief is horrendous but then that's a different thing that you can be helped with. And I thought she can do it, I can do it. Then I'm saying, if I can do it, you can do it. Voiced your fears to somebody you trust. Don't try and keep it to yourself. Talk about it. And as I say, live in the moment, don't worry about how you're going to cope when that person is dead, because you'll spoil the time you've got left and I did learn that. So

Sarah: 42:09

if somebody was listening to this episode now, what would be the first step? If somebody's saying, actually we don't have an advanced care plan? What would be the next step that you would tell them to do? What would what would they their first step be?

Sacha: 42:25

Funny? I know it's fear is fear is the massive one. And it's just paralysing, and you can't think and you've got you're so distressed and emotional. That it is I know that I couldn't think straight that you know, for sure. So which is why you need to be able to call somebody and we had a phone number. I mean, I think as you say, the number at Southampton, general way you I would have a nurse that knew us that would then find out who could help.

Sarah: 42:55

That would really be your clinical nurse specialist or your health care.

Sacha: 42:58

Yeah. And, you know, and basically getting the palliative care team involved, as soon as possible. I mean, just immediately, so get, you'd ring the hospital, you'd ring their consult, you know, you during your during the clinical nurse specialist, I know that was my first point of call. And you would need the palliative clinical nurse specialist and or a consultant depending on what's going on. Because they're used to this, they know how this proceeds and what you will need in the house. And they'll have your notes, they'll know who your loved one is so you know what I'm saying?

Sarah: 43:33

What if a CNS was would say, Oh, you're not at that stage yet. You don't need to worry about an advanced care plan yet. Can somebody still say actually, we, you know, we really want to put one in place, you know, we think

Sacha: 43:45

I totally do it, you can't do it too early. As far as I'm concerned, you know that, because once you've done the plan A you can change your mind, you know, if you suddenly totally change your mind, you just put the plan behind your back, you don't have to tell anyone who turns up what you've decided. So it's not set in stone, you can change your mind. And it is constantly adaptive, you know, you change it as things change. Those teams, as I say, will know what to do and get the right stuff to you. There's also the point where it's part of the advanced care plan, sort of what treatments you want to refuse. And hopefully, it does depend if the person's conscious or not. If they're conscious, that's okay. Because they can say, I don't want you to do that to me. Yeah. And because this is important to me. The problem is if they're not conscious, and then I'm afraid, whatever, however much the family knows, the doctor legally has the responsibility. So that's another reason why the advanced care plan is so important cuz it's written down.

Sarah: 44:46

absalutely. Yeah.

Sacha: 44:48

So as I say, if the person's not conscious, that's very difficult. So, you know, hopefully you would have a discussion with the team and it would still end up being what they wanted. But I legally that is situation. It's not written down, the doctor is in charge.

Sarah: 45:02

So it's really important is that having an advanced care plan isn't an end of life. It doesn't mean that life is stopping. It just means we're making plans to have a good life at the end, you know, to live well while you can. Yeah, exactly. All the things in place to do that. And that's a good place for us to wrap up. So the next podcast episode we're going to do is focusing on the next stage so I'd like to thank Sacha for joining us for this episode. We hope you've enjoyed today's episode. Don't forget to subscribe to the podcast so you'll never miss an episode. If you'd like more information, you can visit our website at brain tumour charity.org or email our support team at support at the brain tumour charity.org. And finally, before you go, if you enjoyed this podcast, please can leave us a review on iTunes wherever you get your podcasts so we can reach more people and raise more awareness