Skip to 0 minutes and 8 seconds Having end of life discussions Just going to speak a bit about my dad. So my dad, who died, three or four months ago when he was 88, had been ill for a long time. When I was in my teens, he had his first heart attack, bypass, emergency bypass, and really a lifetime of increasing unwellness, I suppose. In the last two years, he couldn’t really get out of a wheelchair. He was breathless, had bad aortic stenosis, had ischaemic heart disease, of course, and couldn’t really get around outside of his wheelchair. So he had a period of decompensation, complete heart block, had a pacemaker put in about six weeks before he died.
Skip to 0 minutes and 51 seconds That meant he had to be in hospital for five to six weeks, which he hated. He hated that. So then, one Sunday, me and my mom just went to the ward and just nicked him, nicked him home, basically. I could see he wasn’t going to get any better. He came home, and rapidly, over the next three weeks, his ability to get around the house just got worse and worse. From being able to go to the kitchen, to next door room, to just being around the room. So I could see this was only going to end one way. Did I talk to my dad about end of life care? He always said, Rob, I don’t want a do not resuscitate order.
Skip to 1 minute and 32 seconds He explicitly said that. But then I said, Dad, do you want to go back to hospital to have some more care? No, I never want to go back there, he said. I never want to go back there again. It was terrible. In fact, he said, it was torture, that. The quality of the medical care was great, actually, that he got. But it was obviously really horrible being alone, apart from my mum, apart from us, and my brother. So he had to resolve those in some way. And he didn’t want to go back to hospital, but he didn’t want someone not to resuscitate him.
Skip to 2 minutes and 4 seconds Over the last week of his life, he became a bit confused, agitated, and wasn’t really capable of having a fully consenting conversation, consenting to anything I think really, in the sense that we think of consent, as in weigh up the decisions and so on. His GP, who was amazing, came round and started to talk about things in general terms. If you were to get unwell, what would you like us to do? That didn’t really sort of float his boat, didn’t really get what she was getting at, which is fine. But he said, I don’t want to go back into hospital.
Skip to 2 minutes and 43 seconds And probably a few days before he died, myself and the GP had a conversation about the lack of usefulness in resuscitating him, to put it any harsher, if you like. And my brother was there, who’s a similar age, not medical. My mom was there, 82, not medical. And I don’t know whether they were reassured by me taking on that conversation. They were worried at the time that we might be denying him treatments that would otherwise work by not resuscitating him. And I said to them, we’re not. A, he doesn’t want to go back into hospital. So obviously, if we resuscitate him, he has to go back into hospital. And secondly, we’re not denying him.
Skip to 3 minutes and 33 seconds I was reassuring them, and a bit, I think, reassuring the GP that we weren’t denying him any treatments that were going to help prolong his life in a way that would be OK to him.
Skip to 3 minutes and 47 seconds Did being a doctor help or make it more difficult? I think being a medic who’s done some intensive care, critical care, I felt it was easier. But also, I’d also had 30 years in my head to prepare for this, in a way. That I’d thought about it a lot. It’s always been in the back of my mind that my dad was going to die, very likely before my mum, and before me, of course. Yes, I always had it in the back of my mind, he’s going to die. So I thought my GP coped very well with the fact I was a doctor. She sort of sought control a bit, which is great.
Skip to 4 minutes and 24 seconds With my prompting, but that’s OK, we sort of negotiated things. And I hope– I’d be interested to speak to my mum and dad about– well, my dad, too– my mother and my brother about it, actually to see how they felt. But I think it was easier for me being a doctor, because I had the medical knowledge to know actually nothing more could be done with my dad in the way that he’d want it.
Skip to 4 minutes and 53 seconds Do you have any regrets? I think I never really talked about it with dad throughout his conscious life, throughout his life, as I knew him, as my dad. He was a hospital biochemist, not a doctor. And he always said, I don’t want a Do Not Resuscitation order put on me. He actually did a degree in his 70s in medical philosophy, actually, called lies and deceit in the NHS. So he was concerned with the truth. But, of course, against that we’ve got to balance reality. So what do I think? What do I regret? I don’t regret anything about the whole incident in the general sense. I’m proud to look after my dad at home.
Skip to 5 minutes and 32 seconds It was an amazing experience, actually, an amazing experience, probably one of the most amazing experiences of my life. But I do feel a bit of difficulty that I didn’t talk about it with him. But then I also think, well, he didn’t want to have that conversation overtly. So the only time Rick and I sort of lied to him, I think, in a way, he said, is there hope. And we said, yes, there’s always hope. And that’s actually I because I knew there wasn’t hope in the sense that he meant it. As in, hope that I will recover and live. But that felt cruel and harsh, and I had to make a quick decision when I’m speaking to my dad.
Skip to 6 minutes and 9 seconds So I thought that was a kind thing to do. So I was always acting in kindness, I think, out of love for him. But yes, I’m a bit ambivalent about not talking to him. But overall I wouldn’t have done anything different, I think.
Skip to 6 minutes and 29 seconds Would an advance care plan have helped? I think it wouldn’t have changed what we did now, here and now, so then, rather, for my dad a few months ago. I think he probably would have said, I want to be resuscitated, probably. And then it would depend on my response. Would I have pushed and say, well, that would mean you have to go to hospital. How are you with that, dad? Are you OK with that? I think that what I could have done is I could have left that document there, just to have a conversation about that. Oh, dad, what do you feel about that? Do you think it was OK? Do you think it was not?
Skip to 7 minutes and 5 seconds And well, what would you like me to do so? I think it would have been useful to have that chat, I think. I think in more general terms, people have a variety of responses to that. My partner feels– she’s a vet. And she feels, she’d like to be put down, effectively, if she were not in a position to dictate what goes around her, what treatment she had. That’s a pretty extreme point of view, I think. But I don’t feel that way. I think you’ve got to change your mind, as well, at various parts of your life. So I think it’s a good thing to start off the chat. That’s what I think.
Skip to 7 minutes and 45 seconds And it’s a chat you need to have on an ongoing basis at different times. And it’s about phrasing, as well, actually in what I said to my dad, Dad, do you want to go into hospital? He said, no, I’m never going there. Well, I thought, well, then, there’s only one answer then. And I didn’t need to persuade him that he was saying no to treatments that were going to save his life, in any meaningful way that he would have liked.
Having end of life discussions
Having end of life discussions can be a challenging task. In this video, Dr Rob Stephens, a consultant anaesthetist at UCLH, discusses his experience of having end of life discussions with his father and his family.
After watching the video you might like to comment on how you feel when having these discussions with patients and their families. How do these conversations help to improve end of life care?
Following the discussion move on to the next step where we will explore how we can improve perioperative care for the elderly in general.
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