Interviewer: Torrin Wilkins

Interviewee: Liz Smith

Torrin Wilkins: My name is Torrin Wilkins, the Director of Centre Think Tank, and today I am joined by Liz Smith. We will be discussing her experience of assisted dying within Australia.

Her brother, Rob Smith, was diagnosed with stage four lung cancer in October 2022. He died at the age of 39 after accessing voluntary assisted dying in the state of Queensland. Liz is from Hertfordshire and was with Rob in Queensland when he died. Thank you so much for joining me today, Liz.

Liz Smith: No problem.

Torrin Wilkins: When Rob was diagnosed with stage four lung cancer, what factors and considerations went into his decision that he would like to access an assisted death?

Liz Smith: So when Rob was diagnosed, assisted dying actually was not legal in Queensland. It had been passed into law, but it was coming into effect in January 2023. Right from his diagnosis, he knew it was something that was coming and thought it would be something that he would consider. At the same time, when he was diagnosed, he was pretty well and was hopeful that he would be in that sort of small percentage of people who live for longer and that kind of get through it or manage to keep their cancer at bay for a long time. But I think it was just in the back of his mind that it was an option if he needed something in the massive arsenal of medical treatments that comes with a diagnosis like this. This was just another piece in that.

Torrin Wilkins: And do you know how he found out about it? Because it is interesting. I have spoken to a lot of people who are some of the first to actually use the system. So, how did he find out about the system and go, “Oh, actually, that is an option I would be interested in?”

Liz Smith: He just knew about it because he had seen it in the press in the same way that so many people in this country would have never thought about assisted dying. And then they have seen it in the press over the last sort of 18 months. I think he just heard about it. He had seen it and then started looking into it. In the hospice where he died, he was only the second person who had had an assisted death in that hospice since it had come into effect that year.

Torrin Wilkins: And I suppose it must have taken a lot of emotional strength to go through a system that was relatively new in the state at the time. And so was it daunting? Or was it something that he was fairly relaxed about?

Liz Smith: He was pretty relaxed about it. I think what sometimes happens when you are a patient is that you have lots of doctors and medical professionals telling you, “You should do this and you should do this and we are going to do this and we are going to try this and let us do that.” And, with this process, it is slightly different because he was able to lead it and say, “I would like to go down this path. I would like to speak to these people.” And it was, as I said, it was just part of his treatment in the sense that when he was having these discussions, he was still looking for trials. He was still having chemotherapy and immunotherapy. And so I think he found it in a way quite reassuring to be able to do something for himself that felt right for him, and like a bit of insurance. He was not certain that he was going to do this, but knowing that he could took a weight off an otherwise extremely stressful and terrible situation in many other ways.

Torrin Wilkins: What were those final months like before Rob accessed assisted dying? So, how was it for him, but also for you as a family?

Liz Smith: Following on from his initial diagnosis, he was quite well. He climbed mountains, went to the beach, and spent time with his kids. He finished his plumbing qualification, but he carried on. He was much like a lot of people, ill after he had had chemo. He had chemo once every three weeks, was pretty ill for four, five, six days after, and then lived his life. 

But in the final months, and you hear this anecdotally as well, especially in younger people, his health deteriorated fast. So whereas he had still been living, he then started going into the hospital more frequently, really struggling to breathe, taking much more medication and stopped being able to live and was just kind of bouncing from appointment to appointment or from hospital stay to hospital stay. And that is really difficult for anyone going through that, but also trying to manage that with a young family and being unwell and having to also manage children and a family is really difficult. And I think he just started to feel really terribly unwell in a different way than he had before.

And what he found when he was in the hospital was that, understandably, doctors are trying to cure and fix things. And when you have a terminal illness like this, it is not just the cancer, it is all the other things that come on top of that and the effects of chemo and all the rest of it. So he was having multiple other health issues that doctors rightly were trying to fix, but he could not be cured.

So in the hospital, it was really distressing for him. Firstly, because of all these aggressive interventions, draining fluid from his heart, they were finding blood clots, things like that. But also in a hospital, I am sure anyone sort of, you have heard this, “Okay, you have had as much paracetamol as you can have today, so let us save this for tonight.” And I heard them say that so many times, “Let us save this, you have already had what you can have.” And so, actually, his pain was not being managed. And I think it was just really distressing, and he got to the point where he felt like he was waiting to die. He knew what was going to happen. He then became too unwell. He was thinking about trials, but he became too unwell, so he was not strong enough to travel for the trial. And it got to the point where he knew it was coming to the end.

Torrin Wilkins: Yeah, and you hear that a lot, that idea of feeling like you have sort of exhausted every option. And it was a thing that sort of has come across to me, sort of speaking to more people, is that idea that actually a lot of the time, there is this idea that people will not have tried every option or will not have tried every trial. But actually in reality, and including in Robs case, it feels like actually people try the full arsenal of things available, like they do everything that they can, and then this is more the sort of final option that they have rather than it being this sort of choice, which it does not sound like it was.

Liz Smith: No, this was not sort of a front of mind, “I have had enough.” You know, his children at the time when he died were four and six. Like he wanted to live. Everyone wanted him to live. No part of him was like, “Oh, let us just call it a day.” It just was not the case. For him, it just got to the point where it was unbearable. When he died, he died four days before his 40th birthday. If he thought he was going to make it to his 40th, he would have. He wanted to make it to his 40th. But you know, we are talking, you know, the day that he died, he did not think he was going to make it four more days. So we are not talking about cutting months and months off his life. We are talking potential days, maybe a bit more, but how bad would that have been?

Torrin Wilkins: And what level of control did Rob have over the process? And did you think he was in full control of everything that was happening? So, how easy would it have been for him to end or pause the process or to raise concerns? How easy would that have been within the system?

Liz Smith: I think it would have been really easy. So he had at one point chosen a day and then changed his mind. So from that perspective, just from that one view, actually, it felt like it was easy. And actually, he knew the guy who administered it, he had met him, he built up a rapport with him, and they had had a little joke. And this is someone he knew whom he could speak to and discuss things with. And I think he found the whole process reassuring and comforting. It was not that he did not, it was more him trying to make it happen than the process pushing him on. It was very much led by him. And, you know, obviously in any of these processes, there are mechanisms and checks in place, and so you have to go through that, and that sometimes is a bit tricky to navigate. But he and his wife, as well, at no point said this was difficult or immovable and that it was all very much at his own pace.

Torrin Wilkins: That very much lines up with a lot of what I have heard about safeguards. It is that if you are going through it and you would like to access the system, the actual safeguards and the checks often provide more of an opportunity to have discussions. And as you say, to get to know people in that process, who you are, then relying on it later. So again, it is interesting that he knew the person who then actually carried out the assisted death because a lot of the time, it can be that it is self-administered, or it may be someone with whom they do not have as much relationship. So yeah, it is really interesting to hear that he had that sort of personal connection with the person doing it as well.

Liz Smith: Yeah, and I think that was important. He made it. I think it felt that it was not just this stranger coming in and doing this, he knew him. Which I think is a bit more comforting.

Torrin Wilkins: And I know we sort of touched on this earlier, but did that access to an assisted death give him that sort of safety net or security, knowing that he had that control over the manner and the timing of his death as well?

Liz Smith: He told me himself that he was not afraid of dying. I think what people forget is that when you have a terminal illness, actually, your treatment sometimes is unbearable. It is the treatment itself. You have been through so much, and having that fear at the end of how bad this is going to get? You know, we all have access to Google. But you know, and you can imagine the things you are looking up. And so, actually, he did not have that element of fear. Did he look afraid when he was in the hospital, and the doctors coming in and out and doing all this stuff to him? Yes. But, at the end, when he was sitting in his hospice bed, he knew he was dying, and he was like, “This is not living. I am just waiting to die.” And you know, he had an extremely dark sense of humour and he was like, “Just love at the end that I can be like, *swear word* that this is my choice, I get to say the last word, goodbye, and not have to suffer anymore”, effectively unnecessarily, because it is one thing going through your treatment and suffering if you are going to come out the other end, but he knew he was not.

Torrin Wilkins: And dignity is a reason that many people speak about when talking about assisted dying, but for Rob, there also seems to have been two other emotions. The disease would have robbed him of that joy, and how his children were able to remember him in his final month. Can you tell me a bit about joy and memory and why those things are so important to his experience?

Liz Smith: Yeah, he had had a friend whose wife had died from breast cancer, and her son was young at the time, and it got to the point where her son could not visit her anymore. It was too distressing for everyone. And it just went on and on and on. So for that child, knowing his mum was still alive, that is really distressing in many ways. And I think his children were so young when he died that I hope the memories of him are preserved. And do I think this was the main driver for him? Absolutely not.

But his children will not remember; they will remember who he was, this big six-foot-six rugby-playing fun dad. Hopefully, they will not remember hospitals and hospices and someone essentially fading away, which you hear so much. And that is also for young children, really, really confused that they are not gone, but you cannot see them. And it is also really distressing for the adults. And also for him, as he got sicker and sicker? Having his children visit was really difficult because he did not have the energy to engage with them. Certainly, I hope that is what they will remember. They will remember who he was, like we all do.

And what I hear from a lot of people with family members whose loved ones have had bad deaths is that on top of the tragedy of the death and losing that person, there is a layer of trauma of having to watch something horrific and not being able to help. And, you know, what happened in our family was terrible, but at least we do not have that on top of it.

Torrin Wilkins: And it is interesting because sometimes it is almost that element of choice about how you would like to be remembered. And often I feel like it is framed in some American reports as almost a burden, which seems to be the word that comes up a lot in the debate around it, but part of it is, do I get to have that choice about how I am remembered and, you know, what the last memories people have of me? Which I think is a really interesting side of that debate that does not really come out much.

Liz Smith: Yeah. And his self is preserved in that way. And the day he died, he had lunch, and we had a glass of champagne. His friends came over that weekend to have pizza and a beer and all that kind of stuff. But he was able to do those things for short periods. And then over, say, 48 hours, he was unable to walk. So it was just deteriorating so quickly. And I expect he could feel himself going and sort of becoming less himself. He was obsessed with food. It would have devastated him if he could not eat. And he still could.

Torrin Wilkins: Yeah, it sounds like it is those things that people themselves, because often and I have spoken to other people who have been in that situation of having a loved one accessing assisted dying, it is sometimes those smaller things that we do not often think about. I know one person I discussed how, with her husband, it was being able to eat his favourite kind of ice cream. It is something that you take for granted on an ordinary day-to-day level, but to that person, especially when you are in that situation, it means everything.

Liz Smith: Yeah, all the things that still make you yourself. And so many tiny things. And when you are a patient, you spend your day with people treating you like a patient, “Have you had this?”, asking you medical questions. And you can lose a sense of self, and it is actually really nice for him that he did not.

Torrin Wilkins: And so finally, looking back on all of your experience, if you could tell politicians and the public in the UK one thing about assisted dying or the system in Australia, what would it be?

Liz Smith: Someone asked me recently, did he sit you down and tell you all if he was going to do it? And I was like, no, this felt completely natural and normal and the right thing for him and his family. And it will not be for everyone.

And so I think what I would say is that having the choice and the option is the most important thing. And for so many people, they will never use this. I looked at the data for Queensland, and it is less than half of the people who apply actually go through with it. And it is not because they do not qualify, it is just because they do not do it for one reason or another. But knowing they can, I think, makes a massive difference. People facing the end of their life have enough to be afraid of, and they do not need to be afraid of that as well.

Torrin Wilkins: Well, thank you so much for joining me today and for sharing all your experience.

Note on interview transcripts:

All interviewees gave informed consent for their quotes to be used within the publication and for their interviews to be published separately. They also had the opportunity to review, approve, and suggest edits to the final transcript before publication to ensure clarity. These interviews have also been edited for grammar by the interviewer. This written version of the interview is the final and definitive version.