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And the doctor says, Is there anything you want? You know, your very last wish, and I see you couldn't open a bottle of semi also me on Blanc, and he's got one, and he opens it, we will have a glass of wine. No, I have, I have a bottom, and then I die. I think we can do that.
Welcome everyone. Have you thought about death? Not many people have, and by the time people are ready to talk about it, it's often too late. What happens when you begin to die? What is the end of life for palliative care? Who looks after you and what is a good death? We brought in our palliative care expert Ed, who will discuss end of life care and how dying is changing. Ed has over 25 years experience in palliative care in Western Australia, and leads Brightwater's approach to end of life care. Discussing this scary topic with us is Rob full of energy and experiences at 75 and Veena sharing her incredible 90 years of wisdom and perspective from our Brightwater community. So let's get started. So welcome back, beena and Rob and welcome to Ed.
Today, we're going to have something bit different. We're going to talk about Question and Answers around dying and palliative care, and it flows on from our previous conversation about what we think about dying. So Ed is a palliative care specialist, and he works at Brightwater, and he has lots of experience in the space. And as I was saying, we've worked together for over 30 years - so I'm only 31 - and so I thought this is an opportunity to ask him some questions I might did you want to talk about what I might just get the ball rolling? Do you want to just talk about what the difference is between all this language that everyone uses, like, we call it end of life care, some people call it palliative care. Some people say, dying, yeah. What's the difference?
So there's a couple of differences we talk about when we talk about palliative care, we talk about people that have a life limiting limit, limiting illness. So when we talk about that, it could be someone's got dementia, someone's got heart failure, someone's got a neurological disease like Huntington's disease, motor neuron disease, and of course, cancer falls into that. So from point of diagnosis and if there's no treatment to fix we know that person is on a palliative care pathway because we manage symptoms when we talk about end of life care, and there's a lot more conversation or definitions we talk about, usually the last year of someone's life and and trying to pick Those pieces up and understand when you and the last year of life is very tricky. Cancer is very easy for us to Pro to look at prognosis when people have dementia, heart failure, maybe diabetes. On top of that, we look at different parts of that person's life that is deteriorating. That adds to a big picture of when are we going to die?
Yeah, because this could we could all be end of life. Yeah, we're all end of life. Sorry, what was that? I don't want to go on that face. What phase is that, all those, I have, all of those things.
It's largely medical, medically based, in a way. Yeah, it's medically based. But what we realize medicine doesn't hold at all. No, we look at people's lives as everything you've talked about in the last couple of podcasts is what, what makes you happy? So we we talk about palliative care being about quality of life, so understanding it's just not the dying bit. The dying bit for us is the easiest bit to look after. It's the bit that we worry about, the bits that we can't really control, just stuff that makes you feel safe. We're trying to improve your quality of life the whole way through, but we need to be understanding what your quality of life should look like as things change. When you're talking about your family a little bit earlier, about podcast, families play a big part of all the king. Understanding people's spirituality, understanding what the staff here can provide is very important to us, because then we know what we can provide. You. Yeah. So when we talk about palliative care, we talk about what makes you feel safe. So did I go home the doggy? You know, not having a great day at work. I have a great day work every day. CEO lady, the dog, talking to my family, sitting in the garden makes us feel safe. Nothing to do with medicine yet, right? Yeah, and not everyone needs drugs to be kept comfortable. Sometimes it could be religion, yeah.
How do you manage families? Then, because, sorry, I jumped in because I've got lots of questions too, sure. How do you manage families? Because I imagine that your families have different expectations of what it will be like at the end of your life, and we might want different things to what you want. So how do you do that?
I think handling families and managing families and managing family dynamics as well, because we all come from different families and different backgrounds and different beliefs and different upbringings for us as nurses, doctors, care workers, OTs, physios, social workers, all the people that provide you key here, we need to understand exactly what you said earlier, what I want when I'm coming towards end of towards the end of my life, and often what we find as the clinicians or the care workers or the GPS or a specialist doctor that we just broker that conversation, because I know my mum won't talk to me about what she wants because she doesn't want to upset us. But when we talking about death and dying, it's an upsetting topic, but the more information we have as a son or resident or anyone really, more information you got about how you're going to live well and potentially how you might die, it disarms a lot of anxiety out of people, even though it's upsetting topic to talk about. So I've done I've been working power care about 30 odd years. We look at I've never had, literally, I've never had one family go to me. I wish you didn't tell me that I've upset a few people. Often, there's a couple of tissue boxes that sit in the on the table, in the middle of the table, but, but people have gone actually, what you've just said makes sense, because I've seen many deaths in my life that I can see where we're going. So we should start planning.
Can you put a number in your experience on the number of people who are afraid of death and as opposed to those who accept it?
Yeah, so once I most probably in my lifetime, met 10% of people that were afraid of death. Lot of people afraid of the dying process. Yeah, yeah, that makes sense. So when you guys were talking about death, I think that moment of death for you is nearly a relief, but people are scared of that. Moments of that build up to it, how will would it look?
Well, if I think about it, don't be afraid of, yeah, I think about how you die. Is that where you're from? Yeah, but if I don't talk, don't think about my life is easier, yeah, and, and there's no point thinking about it, because we know we can manage it. Yeah, we can manage your symptoms. We can manage your pain. We've got all the tools of the trade. Wa actually provides outside specialists to support as well, and our staff are trained in providing end of life care. Yeah, it's become our core business.
Sorry. Do you get insight into how people relate to the afterlife. I mean, they know they're gonna die. Do they have a fear or non fear, indeed, of the afterlife?
Yeah, so that's really good question, because I don't ask, do you want CPR as my first question, or do you want this? And that what treatment I ask you, what makes you feel safe? Some people will say to me, religion, there is a God, and I'm so prepared to see my god, whoever that God is. Some people exactly like you were saying, I go to a different place. I just don't know where yet and but we always come back to, how do we get there? So people have a sense of spirituality. I won't say faith. It's a spirituality, a footy team. It could be what makes it literally is what makes you feel safe, and that's what our job is to is make you feel safe through that process.
And we've and then we got all the tools so you don't necessarily guarantee, for one of a better term, that you can stop the pain, stop some of the symptoms, you'll manage them to the best. We will all, not just our organization, but all organizations, work really hard to do that. I mean, we can't guarantee that. We can guarantee that we put all the I'm asking this not a statement, really, we put as much as we can around it to make it as comfortable and as safe as we possibly can for them.
Yeah, and it is. It's literally in my head. It's like we were talking about it this morning with some of my colleagues. It's nearly like having a baby. You have a plan A, B, you have your are going to have a natural birth, and then you might end up having a cesarean. So we look at all the backups you might need to provide that care. Good example, because we have, yeah, we have all these specialist teams that will come out from hospitals. So WA Health has provided all that free for all of us. If you're an aged care facility, we can get a specialist, doctor, specialist nurses, make sure we're all on the same pathway. That includes your family, includes your GP, includes all the nurses here.
So if I do get very sick, do I stay here or they send me to hospital? Depends.
That's the conversation. That's the advance care plan. So when we talk about wishes for the future, we talk about all those things. So we talk about what we can what we need to do is at Brightwater, is say this is all the stuff. Stuff being treatments we can provide you here. So we can give you oral antibiotics. We can give you painkillers if you're really, distressed, and we couldn't manage it. We won't want you to be distressed. Maybe Hospital is a good place to be. So if I break my arm, I will go to hospital anyway and have that managed by a GP. So we, we, we have all those clinical pathways already in our head, but we need to tell you where all those pathways lead, yeah, so you can make a decision with your family.
Nobody is now, what I'm saying is my ex went to Michaels. Is it in? Is a very good one. He wanted the last three months of his life, yeah, and he died there. He didn't went to the hospital. They had everything around him, the all the caring, really was excellent. Yeah, he didn't feel his death, although he couldn't. He lost his walk, he lost his voice, but he never went to hospital. It was there. He died there.
You can make that choice very peaceful. Six years they said to my son, he's He's, um, he's organs are closing. So literally, they said, after you want me to give him washing? And my son said, yes, when you think it's is appropriate, just give him whatever he needs to be comfortable. And he takes space, what one day and he died. Any pistols on the others?
Nothing, really, yeah, and that's the role is, that's what I like to happen to me. And that's the usual scenario we say,yeah. Most common you were going to ask.
I'll just then I might just reiterate that, or talk to Ed about that, if you were to talk about most people's kind of trajectory, the one that Venus talked about, that's the most common, isn't it, where people gradually lose consciousness, and we keep people comfortable? Yeah, so often we'll see little dips in people's health. So maybe I roll up in the hospital because I can't breathe properly, because I might have a bit of heart failure. They manage it. They give us a plan back here, and we will say we can manage all of this year. We got all the tablets.
In the meantime, the person is suffering.
We'll manage the suffering. Yeah, with it, because we're managing your Yeah, managing your breathing. We're managing pain as we go and where your ex got to was that last weeks of life, often we will pick up that deterioration many, many months before. Are you losing a bit of weight? Why? We maybe need to give you more supplements? Yes. Maybe you need to do a blood test, because your kidneys maybe not working, yeah,
but he couldn't even swallow anything. Yeah, so he was getting to that terminal phase of life. So that's when we talk about, we talk about what we try to do here is look at that deterioration and see what we can fix. Because it's all if we can make you feel better, that's good quality of life. If you if we can't fix it, and there's no doctor or hospital in the world that can help, then we'll talk about all those medications to keep you comfortable, and that's the term, what you call terminal phase, yeah.
That's what they like, yeah. So I break my home and we can do that, yeah. And most this podcast goes all over the place, and most providers and carers and hospitals will be able to do that, but because that's the most common course in certainly, what I was going to say was, I've been in care for about six years, yeah, and in that time I got figures, but I've known of several people who have died in care, in care homes, and. And all concern have been happy with the fact the family and whatever, there was no no need to take and taking them to hospital would have been an extra trauma. They're happy where they are. They know they're gonna die, yeah? And they died facility, yeah, or the staff in whichever facilities is, know them well, yeah, often, yeah. That helps all of all of those things, but that's your choice.
But they are special places where they really accept people. That is on the last week of them,
that's right. So they're called hospices, generally, yes, and I know it's worked in those and that Jen, I think that's generally for people who are coming from home, not necessarily already living in a place like a residential aged care. Is that right? Maybe?
Yeah, and hospices will look at patients, clients, anyone from home with very bad symptoms. So if we couldn't manage pain, they will go to a specialist unit. So they call them palliative care units. Now they moved them from hospices to palliative care units by virtue that they do a lot of clinical interventions. So use a lot of drugs. Specialist overview, as soon as you're patched up or tuned up for a better way, they kick you out. Yeah, so, but that's like hospital. So it's a hospital system.
That's what that looks like. Yeah, most patients or clients or anyone that works, anyone that living in an aged care facility, 90% could actually dive, generally, very comfortably in any facility, in person, yeah, can I just sort of a quick story about I have a dream about dying. I was a long term alcoholic. Managed it very well. My only suffering is internal organ damage and lack of balance, but I drank up to three bottles of wine a day for many years, a day, and I have a dream some type, and it two or three times. In care, I'm in my room. I'm in bed. The room is of a certain size. Somebody comes in to tell me I'm going to die. And then the room fills up slowly with people, and there's a guy at the end of the bed, and he's a doctor. He's in a white overall, and he's got an a stethoscope around his around his neck. And by this time, there are more people in the room than the room can handle. It's expanded. A lot of these people, I don't know. They're not, not read as his friends. I just don't know. They're just a crowd of people who have come to watch me die. And the doctor says, Is there anything you want? You know, your very last wish, and I see you couldn't open a bottle of semi also me on Blanc, could you? And he's got one, and he opens it, and we will have a glass of wine.
No, I have, I have a bottom, and then I die. I think we can mention I don't mean I am allowed to drink, but I don't drink by my own by my own decision. I haven't consumed alcohol were over six years, and that's my decision. Never have and never will again, but that is the dream I want. That last wish to be a bottle of semi or so me or long can I tell you that we could do that in the fridge? Something that happened. I had an operation. I had many operations, also one of them. And while I was in operating room, I had, I saw that I was dying, and the day was a tunnel, the dark, and at the end there was a light, and that light was like an X, and was the corners were coming smaller and smaller both sides. And I would die when that dot disappears, right, when the energy disappears. And then I woke up, and then I asked my doctor, who break me? I said, Doctor, did I had any situation that I was my life was depending on the operation that I was? He said, No, well, but I had a sensation that life was, that I was theater, no underwear.
Did it scare you? Yeah, Did it scare you?
You frightened? I couldn't really scared me. I knew I was gonna die. Oh, sorry. Everyone was coming into my mouth. When it was going like this, I had that light coming through, and then I said, when that thought disappeared, did I die? As I couldn't talk, because the energy was going through, well, it's another it's a nice kind of feel, sensation to think that that might be what it's like. It was just like that. I might on that note, because it's quite a nice way to finish to think about what our last thought might be, your last glass of wine, last breath. Yeah, I think I don't know what mine will be, but I'll have a think about that over the weekend. I am only 60, so thank you Veena. Thank you Rob And special thanks to Ed, who may be here other times. Yes, see you we'll see you next time on I'm too old for this, which is brought to you by Brightwater, creating communities where people thrive, connect and belong. If you'd like to get in touch, contact details are in our show notes.