Full Transcript
[00:00:11] Dr Monika Wieliczko: Welcome to Guide to Afterlife, your go to podcast for young widows. I'm your host, doctor Monica Velitko, a psychologist Susan your fellow widow. Each episode brings you insights from world renowned grief experts and authors discussing complex grief issues and their personal experiences of loss. My aim is to challenge the way you think, empower you to face your feelings, and help you develop resilient ways to grieve. Move beyond surviving each day MAID visit guidetoafterlife.com to take part in the grief MOT, your first aid program for grief. In today's episode, we are diving into a topic that raises profound ethical, emotional, and social questions, assisted dying. As of February 2025, the terminally ill adult's end of life bill was in the committee stage in the UK Parliament. The bill is expected to continue to be considered into spring twenty twenty five, and if passed, it would allow terminally ill adults, expected to die within six months, the legal right to end their lives under specific safeguards. For some, this represents in compassionate recognition of individual autonomy and the right to Dying with dignity. But for others, it raises concerns about potential coercion, societal attitudes towards disability, and the future of palliative care. It's a deeply personal issue, yet one that has widespread implications for how we understand death, suffering, grief, and choice. And to help us unpack the complexities of assisted dying and what happens to families and people left behind. I'm joined by Professor Susan Cadell, a leading researcher in grief and grief literacy. Susan is a professor in the School of Social Work at Renison University College affiliated with the University of Waterloo in Canada. Her research explores how we understand and navigate grief, including ways we express it, sometimes even through tattoos. She is also the cofounder of the Grief Matters, a national organization dedicated to promoting grief literacy. Together, we will be discussing the ethical and emotional dimensions of assisted dying, the impact on grieving families, and how we can foster compassionate conversations about death and autonomy. So welcome, Susan. It's so great to have you here today.
[00:03:07] Dr. Susan Cadell: Thank you. Thank you for inviting me.
[00:03:09] Dr Monika Wieliczko: Oh, it's my pleasure. And, we had the pleasure of meeting face to face at the conference in Dublin November Last Year. MAID, yes, I thought it would be so nice. I met so many interesting people at that conference in just the breadth of knowledge and just the variety of Monika. I was just blown away and thought it would be so nice to to have you here to talk about this such relevant topic right now for the whole of UK and to bring some of your research expertise into this because obviously I'm mindful that you have been studying grief for many years, but also you've got a specific interest in assisted dying MAID obviously want to hear more about that to help maybe understand a bit more about the complexity of the situation, what you found out. So if you could maybe say a little bit about yourself and what got you into the field of grief and researching grief? I'm sure there's a story there too.
[00:04:14] Dr. Susan Cadell: Absolutely. There usually is a story I find. Yeah. So I live in Canada, and my interest in grief started through necessity. In the nineties, a lot of my friends were dying of AIDS as I was, you know, getting married and giving birth. So I had this amazing experience of kind of living both ends of life at the same time MAID had really rough time because I had zero language to to talk about what I was going through MAID often felt that I was being shut down when I tried to discuss what what was happening to me. And years later, when we started talking about grief literacy, I realized that that was part of the problem in that I had no language, and the others around me had no language, and we need to do better. We need to do better around grief for ourselves and for one another. So, yeah, there's been lots of experiences in between both professionally and personally. And here in Canada in 2016, what we call MAID Medical assistance MAID dying became Medical. So it seemed natural to look into the grief experiences around that. So
[00:05:32] Dr Monika Wieliczko: Yeah. So, obviously, you've got almost a decade now of being put in place in Canada. So it's obviously one of those interesting aspects, you know, how the legal ground can shift, introduce some of those changes culturally. And I'm interested partially from my own experience of being in the position of someone who lost a a life partner due to illness that was kind of introducing this whole idea of Dying a very limited quality of life for an extended period of time MAID and not having a choice. Because assisted living was and still isn't legal in The UK as of now, which means that if you are put in a position where this isn't an option for you, you just don't have a choice. And it's quite a frightening experience, especially when severe pain is involved. And that was the case of my late husband where we were just taught we basically have no choice.
[00:06:36] Dr. Susan Cadell: That's one of the interesting things about the Canadian experience is that the situation that we're in comes about from legal challenges. That there were very brave individuals who took our government basically at various levels to court, made it all the way to the supreme court, to decriminalize assistance in dying. So, essentially, our top court told the government that it had to be de decriminalized within a certain time frame. So it's very different from what I understand is happening in The UK currently, but it was very interesting at the time to watch those court cases to listen to the experiences of people who are advocating, for themselves MAID then others advocating for them after they died. And I had an amazing experience in 2015. There's this time period where the court had ordered it, but it hadn't been decriminalized at the government level. And we had a federal election at that point, and I participated in that as a candidate, and I got to go door to door and knock on people's doors and talk to them about what was on their mind politically. And that was very much on a lot of people's minds, And it was an incredible experience. But at that point, the legislation, we knew it was coming. We knew it was gonna be decriminalized, but we didn't know what it was gonna look like. So it was just super interesting to be talking to people about that, and people care deeply one way or the other about this. Mhmm. So there's lots of passion on both sides for sure.
[00:08:20] Dr Monika Wieliczko: Mhmm. Yes. And I think it's there are obviously real concerns, and and that that's understandable of what it means and how that's gonna be obviously dealt with in a practical manner because, obviously, we don't want to end up in a position where we can end up opening door to situations which can be very difficult to track down or there are some kind of serious implications that come with this kind of bill. But as you're saying, it's important to open up this debate, but think also about what happens afterwards because this is what your research talks about. And I wonder whether you could say a bit more about that, what you've been researching MAID also what are the findings?
[00:09:08] Dr. Susan Cadell: So I have the incredible fortune of working a lot with Mary Ellen Medical, who's an anthropologist, and David Wright, who is a nursing professor, MAID they're both academics. And we talk all things grief a lot. And they had worked a fair amount in terms of medical Assistance Dying or MAID and the, you know, the ethics of in. And they had written about nurses' experiences of talking about MAID and things like that. So when we started talking about grief, what we were all hearing was that the grief of after an assisted death was different than grief after any other kind of death. And we Dying sort of of the bent of we societally overpathologize grief, we sort of questioned that. And being good academics, we started looking to see what literature there was, what scholarly works there were in places like The Netherlands where it's existed for decades. Mhmm. And we couldn't find a lot. I mean, there's a lot about grief coming out of Belgium and The Netherlands, but we couldn't find anything specifically about what they call euthanasia. So we thought, well, let's talk to people MAID launched a project, got a little bit of funding, and started having conversations with folks. So one of the particularities about Canada is that we're a very large, sparsely populated. So we were only looking at the experiences of brief after MAID in Ontario and Quebec, two of the provinces in the country, because we know that the whole process of MAID is enacted differently in different provinces because it's a federal law, but each province then kind of puts it into practice differently. We knew the situation well in Ontario and Quebec in terms of how it rolls out, and we didn't wanna get involved in talking to folks where we weren't so familiar with the process. In part, even a decade later, there's still a lot of misunderstanding about MAID and and how it works and how it can be dealt with. So Yeah. We were only looking at Ontario and Quebec, two of the provinces in which the three of us are were at the time located. We spoke to upwards of 20 people, and COVID happened in the middle. We paused, then everybody got used to working online. So the majority of our interviews were done online. But we really wanted to unpack with people their experiences of grief because we are aware of research happening about the experiences of family members about accessing MAID MAID speaking to other researchers knowing that grief was coming up in that, but they weren't specifically going in to talk about the grief experience. And yet we were also hearing social service providers saying things like, well, you have to separate out people who are grieving a MAID death from people who are grieving a different kind of death because the grief is different, and they have to have that space. And in just all felt too categorical that we couldn't be so sure about that without knowing a little bit more. Mhmm. So that's basically what we set out to do was talk to people about their experiences and to see how different it is. And there are differences. There are fewer differences than that those sort of categorical remarks that lead you to believe. So
[00:12:51] Dr Monika Wieliczko: Well, but that's usually the case in all forms of grief that we think that we're so different or special in our circumstances. But when you actually start talking to someone who've lost, I don't know, a parent or a child, You know, my experiences are in some ways very similar to their experiences of when I lost my life partner. So I think it's just it's the concept that is I think there's something unhealthy about maintaining those differences, And I would love to hear more about what you found out and how you approach this subject because it's always interesting to see, you know, to have a kind of objective way of measuring things kind of from a distance rather than when we kind of so emotionally involved in it. Obviously, it's gonna be very different because we all have very unique experiences on an individual level.
[00:13:42] Dr. Susan Cadell: So I kind of think pictorially MAID
[00:13:45] Dr Monika Wieliczko: Yeah.
[00:13:45] Dr. Susan Cadell: You know, what you're describing to me about the, you know, the death of a parent, life partner, child, etcetera. They the commonality sort of the circle in the middle of of the commonalities is bigger than the differences. Yes. Of course, there's differences. But there's differences when I lose a parent and you lose a parent. Right? Like, we or even siblings who you lose the same parent. There's differences, and there's lots and lots of similarities. I mean, essentially, a couple of things. So we did we did qualitative interviews. We invited people who were grieving the death of someone who had assisted dying. They didn't always a % agree with medical assistance in dying, but they certainly didn't disagree with it. Mhmm. And Mhmm. One of the limitations of the research is that we were getting people who basically had good experiences because otherwise, they wouldn't have been willing to talk to us.
[00:14:35] Dr Monika Wieliczko: But I think that in itself, we know if you argue that back in, like, obviously, if there was a huge number of people who'll be saying, well, this is wrong, this has to stop, or all sorts of kind of ideas about it, you probably would have heard about it ten years down the line. I mean, I'm just thinking about what that says about the experience itself. Obviously, we don't know unless you're saying you could have a quantitative survey that would measure people's experiences in a different way, and you might get a bigger sample size or something like that. But I think you're talking about, experiences of those in. And I think that's, as you said, it's about finding out the process and and what that left them with, which is so important because we all have some kind of preconceptions. In will never know what that would be like, if it would be better or worse for my husband. But it's important to hear those stories to understand what that meant for these people.
[00:15:31] Dr. Susan Cadell: Absolutely. And I think one of the biggest takeaways was that no one that we interviewed had any regrets about things left unsaid or, you know, feelings left not dealt with because they knew when the death was happening. Yeah. That's the real difference between grieving a death that is imminent, but you don't know when it's gonna happen because people are still, you know, so sometimes surprised by that and knowing that it's gonna be, you know, Thursday at 2PM. Because when you know it's Thursday at 2PM, you make sure that you say the things you need to say, you ask questions you need to ask. You get the affairs in order or whatever whatever it whatever it is. And so there absolutely were fewer regrets from the folks that we in. And there were some absolutely amazingly beautiful stories about making that final day or those final weeks what people needed, what people needed both the person who was dying and also their network. They're the people surrounding them. So Mhmm. For instance, one of the people we interviewed, their mother had two final wishes. One was to hear a particular musical piece, and the other one was to hold a baby. And they managed to make both of those happen for her before she died. So things like that that make a big difference in the grieving process.
[00:17:17] Dr Monika Wieliczko: Mhmm.
[00:17:17] Dr. Susan Cadell: When someone dies, you know, we know they're dying, but we we leave things left unsaid for whatever reason because of ourselves or because of circumstances.
[00:17:28] Dr Monika Wieliczko: Yeah.
[00:17:29] Dr. Susan Cadell: Those kinds of regrets can really make grief harder. Yeah. And knowing that the folks that we in, knowing that they they did everything they wanted to do and said everything they wanted to say, eased the grief. It didn't take away the grief Yeah. Because no one could ever take away grief. You know, I think that's a really important piece.
[00:17:50] Dr Monika Wieliczko: And I wonder what are you talking really is what that comes to my mind is some sense of closure, meaning that I just kind of think about all those people who had a sudden death or experienced, obviously, prolonged illness. You can never know when the person's gonna die MAID that kind of feelings that you're left with at the end. Oh, I missed the moment. They they took the last breath. Or in it's it kind of haunts you for a long time, those kind of thoughts and ruminations. That was definitely my experience from the I was in the hospice with my husband, but I went back home just to have a nap for a few hours. And and by the time I was rushing back, it was only ten minutes, but it was too late. And, you know, even though I was there the whole day, but that last moment, I missed. It's one of those obviously, I can live with it. I'm I'm okay with it now. But the first few months, I remember waking up around 1AM because that was the time when he passed away. It's in, like, my body was kind of trying to repair something, you know, because it was such a traumatic moment. Like, I've I've missed it. I've I can't repair it. So my brain was trying to process that moment, but it was because, obviously, we we didn't know. Obviously, you can't know. It could have been another three days. You it's always a surprise in though you're expecting it. It's like you MAID. But for many, it's still a massive surprise that in actually happening.
[00:19:18] Dr. Susan Cadell: Yeah. Absolutely. And I have a story in my head very similar to yours of back in the nineteen nineties when HIV was affecting so many in Canada, mostly gay Monika, but years later with a mother who had a story very similar to yours that she was twenty four seven at the hospital, and she went home for less than an hour, and, of course, that's when her son died. Those kinds of regrets that through no fault of our own. Right? With all the best of intentions, you still have to eat and sleep and do things. Some of the people that we interviewed were not present at the death. They chose not to be present at the death, but that was their choice. They knew when it was happening. Exactly. And so there was no there was no regrets about it. So it's really unusual MAID, the stories of special moments and, you know, people having their family surrounding them, making sure that everybody was there, making sure that people got to eat or drink what they wanted beforehand, favorite blankets, music playing. They created those moments because they knew when death is going to be there. But in most cases, we, you know, we don't have that experience. This is not from our research, but I was at a conference in the early days of MAID existing in Canada. It was a conference of people who provide MAID, and there was a story about someone who donated his organs. I at the time, I didn't know that organ donation was possible after an assisted death, and they it was someone for whom organ donation was really, really important, and so the death had to occur at a hospital for the purposes of taking the organs.
[00:21:04] Dr Monika Wieliczko: Yeah.
[00:21:04] Dr. Susan Cadell: But the they told this extraordinary story of this person being at the hospital and seeing a helicopter arrive and saying, oh, I bet that's for my organs. And, like, the the importance of that moment for that person. And Mhmm. When the story was being related, I don't remember anybody talking about how that person's network was reacting. But I would assume that, you know, in the long run, it would be a comfort to that person's family and network to know that they got what they wanted. They were able to have their organs donated and that that was important to them. So I think that's really extraordinary, and it often doesn't happen.
[00:21:48] Dr Monika Wieliczko: Yes. Because it's a completely different narrative, isn't it? You think about this being kind of I actually remember a few stories of people saying something very different when the family was left with a decision to be made about organ donation because the person signed a form. But, obviously, it's very different when someone dies MAID you could don't have a choice to have this conversation. And there's there's usually quite a bit of distress, you know, have to make a decision, especially if this hasn't been talked about earlier on. It feels like quite an in, whereas what you're describing is a very different story. It's a story where because the thought that came to my mind immediately was, oh, they were able to preserve part of themselves that stayed on living and preserving other people's lives potentially. I mean, I'm just really struck how differently you look at that from that perspective. What a tremendous gift to another human beings from that person who's dying and and saying, well, actually, if I I die, but someone else can live with my organ. It's really surprising hearing that, but in a really good way. Like, that never crossed my mind that it's even possible.
[00:23:00] Dr. Susan Cadell: I'm the same. And that's why in though that we didn't have that, that's not from our research. You know, I just think it's really important. And I think that's the thing that is really, really incredible is how meaningful, how meaningful the the stories they were creating the story, and they were ensuring that that was the best story possible. And so often, we're not able to do that when we don't know when someone's dying or someone dies suddenly. Of course, a completely different circumstance, but they're in control of the narrative. I hesitate with that because the issue of control is something that gets brought up a lot around assisted Dying. And I do think it's really important, but I don't think it's the the ultimate. You know, it gets used as almost a euphemism. You know, they died the way they lived. We use the kind of controlling death as kind of, a substitute for assisted dying. I have years of experience with working with, you know, family violence. And so, you know, the whole idea of power and control in, like, I just don't wanna I don't wanna give it too much power either. Right? So it is an important part of the narrative, but it's not it's not the be all and the end all. But they were creating their stories, and that's what's really important. Both the person who died by choosing an assisted death and their network, their family, their family of choice, what you know, the people around them. So
[00:24:31] Dr Monika Wieliczko: I I see what you mean about control and the kind of what might be the motivation behind doing it that some people might question or kind of seeing it in a negative light. Mhmm. But as you're saying, it's a much more complex issue that, you know, we don't have I don't think we have the language to describe just how just because it's not like people choosing to die really. They kind of have no option. Like it's, I mean, it's it's I'm sorry but it's bullshit thinking that, you know, they they're choosing to die. No, they they're choosing the way they go. I mean that's how I kind of see it MAID and often we don't have that choice when,
[00:25:12] Dr. Susan Cadell: you
[00:25:12] Dr Monika Wieliczko: know, especially in The UK, for example, in in many situations, even if, you know, if you don't know you have a terminal illness, if it's a Susan and death, you know, very often you don't. But I don't know. The narrative's already saturated with some of those preconceptions and stigma around it.
[00:25:29] Dr. Susan Cadell: Stigma is is a huge part of in, and that's why the language, we've gone with medical assistance in Dying. Euthanasia is a very loaded term, assisted suicide. It's not suicide. It's not people choosing to Dying. As you say, there are people who are already dying. Mhmm. It's very different. In yeah. Exactly. They're choosing when and how to die, that they wouldn't make it different if they could, basically. You know? So
[00:25:58] Dr Monika Wieliczko: Yeah. Yeah. Exactly. It's not like they desperate to Dying. You know? It's, yeah. It brings up such intense emotions for me just even listening to this because it's it's really not that simple, is it?
[00:26:10] Dr. Susan Cadell: Exactly. And the stigma the the major takeaway positively was that they were creating the stories. And the major takeaway kind of negatively is that the way that the grief was different was that they had to manage that stigma. And so we interviewed someone who they knew they had a part of the family that completely disagreed with in. And so that was kept secret. Whereas we also interviewed somebody who the person had been an advocate for a long time in before it was decriminalized in Canada. And so was basically hugely open about in. And everybody knew. The street knew. The neighbors knew. The you know, like, everybody the network, it was it was wide open. Some people wrote their own obituaries before they died or cowrote the obituaries. One of the people we interviewed actually had two obituaries. They had written one that mentioned made and then the other one that didn't mention MAID, and then they kind of made a decision which one to use after the fact. So that kind of negotiation about in it safe to say made in this context? We interviewed someone who talked about going to a support group. Her life partner had cancer, had assisted dying, went to a cancer related support group, and never shared that her partner because she wasn't sure how it was gonna land. And Yeah. So found that the support group wasn't really useful because she couldn't be completely open. So that's how the grief differs because of that negotiation, but that's a societal thing MAID that's about stigma.
[00:28:01] Dr Monika Wieliczko: Yeah.
[00:28:03] Dr. Susan Cadell: And far more stigma in the nineteen nineties about HIV and AIDS, and it was really interesting. You know, I was in my late twenties, early thirties at the time and started reading obituaries, and I've been an obituary reader ever since then. And the language that was used to kind of give a nod HIV and AIDS was rarely used in obituaries. Mhmm. There were kind of coded terms and MAID a similar. It is rarely mentioned
[00:28:32] Dr Monika Wieliczko: Yeah.
[00:28:32] Dr. Susan Cadell: Openly in obituaries, but there are ways of kind of, you know, giving the nod to that. So, yeah, it's super interesting. So that's the the sort of major complicating factor in people negotiating in it's safe to tell, if they have the energy to tell. Mhmm.
[00:28:48] Dr Monika Wieliczko: But I
[00:28:49] Dr. Susan Cadell: would imagine, again, it's not that different from anybody deciding you know, I mean, even for you, like, thinking about how much you share about your partner dying. Right? And, like, there's always that negotiation about how do I feel today, who's asking me, and what the circumstances are to, you know, you always have to gauge how much you share about anything. MAID, you know, that it's it's it's similar with MAID. It's just that made has that added kind of passion
[00:29:25] Dr Monika Wieliczko: Mhmm.
[00:29:26] Dr. Susan Cadell: That makes it slightly more, not dangerous, but slightly more fraught Mhmm. If you're if you happen upon someone who's going to dismiss your experience or whatever it might be. So
[00:29:39] Dr Monika Wieliczko: Absolutely. So so I think what you're highlighting is, you know, that people MAID hear different stories depending on who you're talking to, but also that there's something still that needs an ongoing work around challenging some of that stigma. And MAID, obviously, doing research in that area is incredibly important. And then, obviously, translating that research into conversations like we're having today is obviously part of that experience too because I can't imagine an average person having these conversations with with their friends or family these days still. I think it's something that it's being kind of often being dismissed or not spoken about until it's it's too late, until we're in a situation where, unfortunately, you don't have a choice like it was in in my situation with my late husband. But so there are many, many people like that in The UK who have to deal with it in a in that kind of, I would say, in rather inhumane way. One MAID, severe pain is involved. I think sometimes you kind of, the question of, oh, is this really how people should be dying? Is this I remember putting my cat to sleep and thinking, yeah, at least he didn't suffer.
[00:31:02] Dr. Susan Cadell: Mhmm. Yep. Yep. And
[00:31:04] Dr Monika Wieliczko: Yep. Yeah. And two years later, less than that, we were in a very similar situation with my late husband MAID thinking, well, we don't have that privilege. I don't even know what we would have done, to be honest. But it's the thought of having the choice that really mattered to us and to him and really distressed him for a long time. And then there's this kind of effect afterwards when someone dies. How do you then incorporate that into the narrative? How do you process that knowing that people might have very different opinions about that? But that is the case with grief in any department. It's not even a death, but how you grieve or whether you move in, you know, whether you have a life or do you grieve, how quickly you cope with things. I mean, there's just a variety of issues that come with it in our society.
[00:31:58] Dr. Susan Cadell: And grief in general is still very stigmatized. You know, we're we're not good at talking about it. We're not good about talking about death, but we're even worse about talking about grief. And, you know, I think that we need to do a much better job. I just wanna mention that I have a colleague who does a podcast called disrupting death. And it was really interesting because, their team was doing interviews about people's experience accessing MAID roughly the same time that we were doing the MAID grief interviews. And so they were hearing about grief but hadn't gone into it looking at the grief experiences. And we were hearing about the access stories, but we hadn't gone into it specifically. So there's a there was a lot of overlap, but it's very, very interesting. But they've also done digital stories of people's experiences. So, yeah, I'll, I'll share those.
[00:32:56] Dr Monika Wieliczko: Yes. We will put it in the show notes for everyone to have a look. It's incredibly, important to gather across and read. I'm really interested in reading those stories myself, which which is kind of getting a sense what what people are left with, but also how they've incorporated, how that affected them. It's it's so novel, and I don't think I've ever had conversations like that before, which is really quite surprising because I don't Dying that people want to talk about that. As you're saying, you know, who do you talk to? Who can you trust?
[00:33:31] Dr. Susan Cadell: Absolutely. At the same time, I just have to say one of my favorite interviews, we interviewed someone whose life partner had had MAiD, and our anticipatory was a physician who was not a MAiD provider, who was kind of ambivalent about MAiD MAID became a MAiD advocate, became a MAiD provider, does talks about accessing MAiD, like, just Susan of MAID such an amazing experience that they are basically working against the stigma and trying to, you know, trying to destigmatize the whole experience MAID they they became an advocate. And that's that's just so amazing. Susan and and they're not the only one, but that one was quite spectacular because they are a physician in Dying a in a position to influence others.
[00:34:21] Dr Monika Wieliczko: Right.
[00:34:21] Dr. Susan Cadell: But, some of the people that we interviewed didn't really negotiate. They were just so strong in their beliefs that it wasn't Mhmm. In wasn't an issue for them.
[00:34:31] Dr Monika Wieliczko: Did you know what was the turning point for that person when they were kind of shifting? Did they say
[00:34:37] Dr. Susan Cadell: I think from my from my memory, it was just the how well it went with their partner Mhmm. Dying.
[00:34:43] Dr Monika Wieliczko: So they had some preconceptions about what that would look like, and then the reality of it was very different.
[00:34:50] Dr. Susan Cadell: Yeah. Yeah. Yeah.
[00:34:52] Dr Monika Wieliczko: Yeah. I mean, I can imagine that. Obviously, we don't know exactly what those ideas were, but I suspect a lot of people would be thinking something alongside the lines of impossible to imagine, you know, what do you mean you scheduled your own death? Or all sorts of kind of thoughts about this is not natural, interfering with something at all, all the kind of I just what if something goes wrong? What if they're gonna look distressed? You know, the whole I think the whole idea of what dying would look like, of taking the final breaths or that's something that we struggle to imagine until you're faced with it. And I think there's no other way to find out. But, obviously, every death is different as well. You know, some people struggle. Some people have very peaceful deaths. But from my experience, actually, the last few days when you stop fighting, when you're no longer in this process of trying to maintain someone's life MAID you're in agreement that this is going to happen, it doesn't really have to be a horrible experience. I actually found it quite soothing in a way because it's kind of you're easing into it over days. And he wasn't suffering. In the end, he was in coma. So that made the pain manageable, but it also meant that he did what he wanted to do. So even though I think it was the closest to assisted dying you can think of these days in UK, which was his wish that was supported by the hospice, Saint Christopher's hospice. And they kind of made it very clear that it will make things quicker because the medication that's meant to keep him pain free will also affect his heart and all the organs. But in a way that was his wish not to prolong it. And, you know, and I think and I'm I'm really grateful that we we have this conversation. But what I really struggled with throughout that journey was that we didn't have that honest conversation from the in. And we were left Dying, what is it gonna look like? What is going to happen? What are the stages? How are you gonna manage our pain? And this never was discussed. I think it's because, well, nurses and doctors, I think they're quite worried about being either accused of contributing to helping someone die or in general Dying very vague about the process. And I must say that would have made a huge difference to us, to our experience of preparing for this death. And that wasn't that wasn't available. So I I was really angry at the end thinking, well, why didn't you tell us that it's a possibility of controlling pain to the point of being in a coma or be having epidural, having something that will take away the MAID? But but that wasn't really an option at the time. There wasn't offered to us even though we were asking questions. Actually, one thing we were told, which was horrendous, was that the only way you can legally Dying, choose to die in The UK is to starve yourself to death.
[00:38:01] Dr. Susan Cadell: Which is painful and awful for those around you. Yeah. That's yeah.
[00:38:05] Dr Monika Wieliczko: Yeah. So that was the options we were left with. You're gonna have to stop taking food because he was fed through veins at the time because his bowel was obstructed. So the only option was to, yeah, starvation, which is horrific.
[00:38:20] Dr. Susan Cadell: It is. It is. But I think in general, in Canada, anyway, I would imagine it's not hugely different in The UK, although The UK is, doing better at some things. But health care practitioners and physicians in particular aren't good about talking about death. And so even when I think about, you know, a cancer diagnosis with this kind of cancer, there's a sixty percent chance of survival. Well, let's talk about the forty percent.
[00:38:49] Dr Monika Wieliczko: Mhmm.
[00:38:49] Dr. Susan Cadell: Right? Like and so often, it's not talked about MAID I think that's it's it's unfortunate. And that's why, you know, the idea of disrupting death and talking about it and death literacy, which is also a thing, is so so important. And, you know, it goes, it goes hand in hand with grief literacy, death literacy, but it's they're not they're not the same thing because grief is about more than more than death. But Yeah. You know, I think it's really important that we collectively do better, that we have more language, that we have more choices. And that's the thing that's the thing about MAID in that I'd like to to see it be something that people are aware of MAID that it's talked about early on in any kind of illness process because people there's a there's a whole process. You have to have have two, two opinions MAID, you know, there's a in some cases, there's a waiting period MAID I mean, it's a it's in my opinion, it's a tool to have in your toolkit and not to decide later on Mhmm. That it might be a good tool to add to your toolkit, but to put it in the toolkit early in. And because you don't have to have in, and that's one of the things about our system anyway, and I imagine every Assistance, is that up until the moment of administration, the person can say no. So I can say, yes. I wanna die Thursday at 2PM, and at 01 Today, I don't wanna do. This is not the day. This is you know, things are not going well. What I you know? So you can change your mind even if you enact the whole process. So being approved for MAID, in our case, doesn't even mean that people are necessarily gonna use it. So I think that's just really important, but it's it's about knowing that it's there as an option.
[00:40:49] Dr Monika Wieliczko: A safe way out in a way. Mhmm. That's, you know, I think it just reduces this fear of dying in a way because, yeah, not every death is the same. Mhmm. Not every illness.
[00:41:03] Dr. Susan Cadell: Well, one of the early crusaders, one of the one of the cases that went or maybe the case, I can't remember, that went to the Supreme Court was a a woman who was living with, what's known as Lou Gehrig's disease. So basically, the, you know, the death was like because all of the systems were shutting down. So basically, it's death by drowning. And and she was just adamant that she did not wanna go that way, and she was, you know, an amazing advocate. Her name was Sue Rodriguez, and she was an amazing advocate for the whole Dying with dignity movement. And, eventually, that was part of the I mean, she she ended up dying before this happened, but it was part of what went to our supreme court and why we have the legislation that we have. So
[00:41:50] Dr Monika Wieliczko: Yeah. So some people were able to People can make a difference. Yeah. To speak up MAID to share their experiences and and not be afraid to fight for their own rights. And I think it's very difficult when you're already, as you say, if you're already dying Mhmm. And you're already in the situation where you can't possibly physically leave the country to arrange assisted dying elsewhere or there are problems involved in in all of that And, you know, and having that kind of open conversation is essential with your, you know, medical health provider, whoever is involved in new care. And, you know, it's not to say In think what I'm really trying to get across from this conversation is that I think we have a lot of preconceptions around assisted dying that are not tested. And I think part of your research, part of your work is to to actually look into these things and to see what are these people Dying. Is this really as we imagine it to be? Because we can't possibly know until we're in that position ourselves how we're gonna feel about this. But the overwhelming message I'm getting is that, you know, it's bigger in our heads, the fears around in, than the actual reality of what that looks like, but also what the people left behind are having to deal with and how we can shape our society to help shift that perspective by being more open about what that really is. Sure that religious beliefs will will play a huge role in all that. You know, how we can challenge some of this, some of those ideas, as you mentioned, but also thinking more specifically about the whole issue around choice. You know, where is this choice? What are we left with? Yep. If there is no option of dying without pain or I think that I wonder whether do you know anything about the reasons behind people who've decided to follow that path? Whether there was, there were certain themes or
[00:43:56] Dr. Susan Cadell: Yeah. I think partly in is pain. It's also there are so many reasons, but I think it is is also wanting to, in some cases, make sure that certain things can be done first. And I I remember, listening to there was a a podcast with in woman named Audrey Parker as the guest, and she there was a podcast that was recorded in front of a class of medical students. And she had been approved for MAID, and they released it after she actually had died or the day that she died, I think. And, again, I can send you the link for in, but, she loved Christmas and wanted to, she had a brain tumor, and she wanted to die after Christmas. And she died in the fall because at the time, you actually had to consent the day of. Even though you went through two approvals and you consented MAID there was a time period in the day of, you would have to give consent again. And she was afraid with her brain tumor that, you know, pain medication would, you know, would mean that she wasn't able to communicate or that maybe she just wasn't able to communicate in the same way. And so she died earlier than she wanted to. And that's actually a legislation that's changed, and they named that change after her because she was such an advocate for, change that legislation. And so people within a certain time frame, people don't actually have to necessarily consent again. Mhmm. For instance, a a friend of mine's mother had MAID, and they had to decrease her meds the day of. So they had to basically put her in pain so that she was clear headed enough to consent. Right? I mean, it's just it's it's it's nonsensical. So, yeah, I think pain and suffering is a huge part of people's decision MAID and not wanting to put themselves through that and not wanting to put other people. It's hard. You know this. It's hard to watch someone you care about or even someone you don't care about. It's hard to watch people suffer. MAID why should that happen?
[00:46:19] Dr Monika Wieliczko: In think the bottom line for me when I look at it from that kind of perspective of time is that we just have a really bad relationship with death and illness and palliative care and how late palliative care is often introduced Susan those discussions about death in general, whether that's through Assistance dying or just dying. We don't have those conversations. We carry on with, especially with, I was thinking about cancer treatment. We carry on with chemotherapy and all these invasive treatments for far too long without giving someone a choice and chance to think about those alternatives. And so for me, this potential change in the law in The UK could be an opening to having those conversations and actually helping medics to think about how they can approach those conversations early on, like you said, which is what what you kind of suggesting from your research, conversations early on, like you said, which is what what you're kind of suggesting from your research is that this is really important that these people could have those conversations, which means that they could have a better ending. Mhmm. Because what often happens is in in hospitals is that people are left with those intrusive interventions until the very end MAID they miss the point of death a lot of the time or they die in very dramatic medical circumstances when someone's still trying to preserve life. But actually, if you were more in touch with the reality, I appreciate it's not always possible, but in some situations, especially when we're talking about terminal illness, we could have arranged this time for the family, for the whole system, for the care system as well, to be thinking, okay. Is this really what we want to carry on Dying, or is this time to prepare for death? Which is what you obviously overwhelmingly suggesting through today's conversation is that people are actually having those conversations. They are preparing for death, which is, in some ways, an easier way and more profound way to experience death Yep. Than avoiding it till the very end.
[00:48:22] Dr. Susan Cadell: Well, to be fair, there are people who if everything was talked about, if death was talked about, there are people who would opt to be having that chemo till the very end or having that intervention till the very end.
[00:48:36] Dr Monika Wieliczko: Of course.
[00:48:36] Dr. Susan Cadell: But right now, basically, what we're doing is only ever providing that intervention as an option. And so we're actually limiting people's choices because we're not talking about or or we're talking about it in a way that's almost dismissive. I remember a colleague talking about, you know, introducing palliative care is it's often termed doing nothing, which is so not what palliative care is. But also that whatever in, be it surgery or chemo or radiation or whatever is explained in all the possible ramifications and side effects MAID Medical, la la la la la, are all explained in great detail or palliative care or comfort care or Mhmm. Like and then we just kind of drop in the other alternative. Well, you're gonna take the option that you're hearing more about, and there's just there's so much that's, so much more conversation that's needed. There's so much more education that's needed. One of the things that we find very interesting is I'm a, you know, I have a background in I am a social worker and and, you know, teach social work, is who has the conversations. And is it coercion Mhmm. If I'm working with someone and I tell them that they have the option of seeking approval for medical assistance MAID Dying, am I coercing them? Or am I letting them know their options? And would we even you know, if we if we turn that around and I let them know that they have I mean, this is Monday, but, like, they have the option of roast beef or turkey or cheese for their sandwich, that's not coercion. And and yet if I'm telling them they that they have the legal option of seeking approval for medical assistance in dying somehow, that's coercion. It's really important that that we have lots of conversations, that health care professionals are educated, that there's public education as well. I mean, I still meet people almost ten years on who don't know that medical assistance in dying in Canada is possible. Wow. It's getting rarer and rarer and rarer. Shocker. But, you know, in is it still exists.
[00:50:48] Dr Monika Wieliczko: There's so really still plenty of work to do, but I'm so grateful we've been able to have this conversation and to initiate some of the thinking behind it. I'm curious what that's gonna bring up to our listeners and what the the answer's gonna be or what how people feel about it. I would really welcome to create a space for those conversations and to have a healthy debate about in, what that potential change that might be coming up in The UK, what that's gonna bring up to our society. But yes, I'm really amazed just listening to you about those aspects I I haven't thought about, and it really kind of triggered a cascade of thoughts in my mind. And and I'm not necessarily saying that I would personally even think of, you know, myself even considering assisted dying because it is based on your circumstances a lot of the time. But, gosh, just having a choice would be really nice, and I think that's my ending point for today. And I'm so, so grateful, Susan, for your for your expertise and your time today and and sharing your research findings MAID, yes, for just being honest.
[00:52:04] Dr. Susan Cadell: Thanks. It's been a pleasure. It's always a pleasure talking to you, and it's always a pleasure sharing the research. It's always great. Thank you.
[00:52:13] Dr Monika Wieliczko: Thank you for joining us. I hope you found it useful. Connect with me on Facebook and Instagram under Guide to Afterlife for more grief tips and resources. Visit GuidetoAfterlife.com to send me your questions MAID to take part in the brief amount today, your free first week of life. See you next Tuesday for yet another story of the
[00:52:42] Dr. Susan Cadell: audition.
