Everything End of Life.
This podcast is dedicated to talking to experts and others about all aspects of death and dying. You know, that thing we don't really want to talk about!
As a hospice carer and former psychiatric nurse as well as writer and former Theatre director, I invite guests to talk about their roles in and what to expect in the last four weeks of life. What happens to the person dying, what help is there, what to do before and after the event.
Many of the families we go in to see have one thing in common and that is that they don't know what to expect. I thought that a Podcast may help and then discovered so much to explore that is of interest to people such as alternative funerals, what do Hospices actually do, what role do religions play?
So join me for the first interview as we begin this Podcast with Clinical Nurse Specialist Becky Rix where we grasp the nettle and discuss what happens to us generally in those last four weeks.
Time to explore "Everything End of Life".
Everything End of Life.
The Personal Freedom to Choose a Dignified End
The right to die with dignity stands as one of the most profound ethical questions of our time. Nathan Stilwell, Campaigns Manager for grassroots organization My Death, My Decision, guides us through the complexities of the Assisted Dying Bill currently making its way through Parliament – legislation that could fundamentally transform how we approach end-of-life care and personal autonomy.
Nathan breaks down the historical context of suicide laws in the UK, explaining how the well-intended decriminalization of suicide in the 1960s created today's legal paradox where helping someone end their suffering remains punishable by up to 14 years imprisonment. Through powerful personal stories and international evidence, he illustrates the stark contrast between countries that offer assisted dying options and the current UK system where terminally ill individuals face impossible choices.
We explore the robust safeguards built into the proposed legislation – from multiple independent medical assessments to psychiatric evaluations and continuous consent requirements. Nathan addresses common misconceptions, emphasizing that assisted dying remains a minority choice (just 1-2% of deaths) even in jurisdictions where it's legal. The bill wouldn't replace good palliative care but would provide an additional option for those cases where suffering becomes unbearable despite excellent medical support.
What resonates most are the human stories – the man who died in Spain wearing his cowboy boots while holding his wife's hand, choosing his exit with dignity rather than enduring a potentially traumatic end. Or the Canadian patient who postponed his assisted death to spend time with a new grandchild, eventually choosing his moment after a frightening choking episode. These accounts cut through abstract ethical debates to reveal what's truly at stake: the freedom to conclude one's life story with autonomy and peace.
Whether you support or oppose assisted dying, this conversation challenges us to confront our deepest values about compassion, choice, and what constitutes a good death. The question isn't if we will die, but how – and whether that decision should remain our own. Ready to form your own opinion? Visit MyDeathMyDecision.org.uk and make your voice heard on this vital issue.
For those interested in what Palliative care looks like at home there is "The Last Kiss" (Not a Romance)
Available on Amazon now
https://www.amazon.co.uk/Last-Kiss-Romance-Carers-Stories/dp/1919635289/ref=sr_1_1?crid=13D6YWONKR5YH&dib=eyJ2IjoiMSJ9._59mNNFoc-rROuWZnAQfsG0l3iseuQuK_gx-VxO_fe6DLJR8M0Az039lJk_HxFcW2o2HMhIH3r3PuD7Dj-D6KTwIHDMl2Q51FGLK8UFYOBwbRmrLMbpYoqOL6I5ruLukF1vq7umXueIASDS2pO91JktkZriJDJzgLfPv1ft5UtkdQxs9isRDmzAYzc5MKKztINcNGBq-GRWKxgvc_OV5iKKvpw0I5d7ZQMWuvGZODlY.fqQgWV-yBiNB5186RxkkWvQYBoEsDbyq-Hai3rU1cwg&dib_tag=se&keywords=the+last+kiss+not+a+romance&qid=1713902566&s=books&sprefix=The+Last+kiss+n%2Cstripbooks%2C107&sr=1-1
Hello and welcome to Everything End of Life with me, Jason Cottrell and guests, and my guest today is Nathan Stilwell from the campaign organisation my Death, my Decision.
Speaker 2:Hello Nathan. Hi, thank you for having me.
Speaker 1:No, that's quite all right. So it's a huge question going through Parliament at the moment. Is it Parliament, House of Lords, Parliament at the moment? Yeah, yeah. So regarding the moment, yeah, so, regarding the assisted dying bill, and it's a very emotive subject for many people, I think on both sides of the argument. So before we get into that, do please tell me a little bit about yourself where you came from to get to where you are now. What is your actual title of your job? Let's call it, yeah.
Speaker 2:So I'm the campaigns manager for my Death, my Decision, and we're a really small, grassroots organisation. So that kind of means a little bit of everything I do everything from kind of you know, press and media and trying to get you know a really good public debate on assisted dying, to going in and having one-to-one meetings with politicians and trying to convince them to support this law, because for this, for this bill, it's each individual politician has a say, has a vote on this, so the individual is really important. And even you know the small things, like I'm the one who cashes the checks and updates the website and things like that. Like that's what happens when we have a really small ditty organization. There's kind of really grassroots, a lot of volunteers, volunteer led, that kind of stuff.
Speaker 2:And I got into it, like most people in kind of the charity and campaigning sector, but by accident more than anything else. You know, if you'd asked me 10 years ago this is what I'd be doing, I'd be as shocked as you are. You know I never intended on ending down here, but I did accidentally fall into the charity sector. I worked for the Joe Cox Foundation, which was an organization set up after the murder of the MP Joe Cox during the Brexit referendum, and so that was already quite a high profile, very, very sensitive still, you know, intensely debated kind of topic with really high emotions and really kind of needing to approach it with sensitivity. And through that I got involved a little bit with Humanism and Humanist UK and they're kind of the non-religious organization for the UK and through them I learned more about the assisted dying campaign.
Speaker 2:It was something that I fundamentally believe in, something that I've spoken to my family about and they both believe in and would want for themselves, which my parents and my grandparents we've had these conversations and then, by chance, this job came up and I spoke to my parents and my grandparents you know we've had these conversations and then, by chance, um, this job came up and, you know, I spoke to my parents about it. I was actually with my parents. Uh, the day the job application came through, I said what about this job? And they said go for it. You know that it would be. It would be amazing to be able to campaign for something that would have an impact on so many people.
Speaker 1:Right, okay, so the subject itself is vast. So at the moment, we know there's this bill going through Parliament to decide. So what is the actual decision that they're trying to make here? Because the question is do I have the right to end my own life? When does that happen? How does that happen? And I know there's been a great deal of opposition to this from all sorts of different areas, but there's also been a lot of support for it, because I think, is it the Isle of man? They've just passed the bill there, I don't know in what form it is.
Speaker 1:Do you know a little bit about that at all.
Speaker 2:Yeah, yeah, I went over to the Isle of man to talk to their politicians when they were talking about that. So what we've got in England and Wales is essentially way back in the day, suicide was illegal. You would get locked up for attempting suicide and it would have a huge, lasting impact on your family and everything. So in the 1960s they decriminalized suicide. So that's an important thing is we shouldn't say commit suicide, because commit comes from the fact that suicide used to be an offence. Now it's not an offence anymore.
Speaker 1:I don't think anybody would have really thought that one through. Would they Commit suicide, commit a felony, commit an offence? Yeah?
Speaker 2:And that's where that kind of saying comes from. It's quite outdated. It's easy to say commit suicide. It is really something that we should be conscious of.
Speaker 2:But when the politicians in the 60s were decriminalising doing the right thing to decriminalise suicide they again quite rightly thought about what about people encouraging other people to die by suicide, encouraging um other people to to die by suicide? And so what they did was they in the law? They said it's an offense, it's illegal to assist or encourage someone to die by suicide. And that assist is where we've led into kind of the legal issues that we we've got today, essentially in the sense of if a doctor were to to help a patient to to, they would be committing an offence and they could have up to 14 years in prison. And similarly, what we've seen quite a few high profile cases of is if a family member, a loved one, helps the person they love to die and that can be by going to Switzerland or that can be, you know, in more painful and traumatic and difficult methods, which we do see in the UK very unfortunately that person is also committing a very grave, grave offence.
Speaker 1:And so I've just bought in there for a sec because I mean I can see that to assist. There's also two sides of that coin, because when you look on the Internet, because when you look on the Internet, there have been instances where people have been encouraged to commit suicide, commit suicide and donate again to take their own lives. And I mean they are essentially committing a criminal offence by doing that. And yet you know, a few years ago I remember a young girl who threw herself off a building because everybody was saying yeah, do it, do it, do it, do it, do it.
Speaker 1:And she did, you know, and but then you've got a multiple amount of people. I can see the where the protection side of this is really important, that you know to, that it should be going through a process rather than, yeah the uh, be just your aunt or uncle saying, yeah, you're brilliant to just, you know, talk to yourself yeah, that's awful.
Speaker 2:so what this law does on a to kind of jump into the kind of technical sense is is the proposed bill cars out a caveat of that to say if you assist someone under these circumstances it's very strict, you know through this process, then you're not committing an offence. However, if you do it outside of this process, you are still committing a grave offence. And, interestingly, what the proposed bill does, which I think is very, very sensible, is it in fact makes that kind of coercive side even stronger. So now, if it's very obvious and there's evidence that you're pushing someone towards a suicide or an assisted death, then that is punishable by up to life in prison. You know the equivalent of murder, quite rightly, and that's a new offence that's put in by this bill. So we're already kind of jumping ahead. But this is this whole idea of by introducing a regulation, a framework, a path for someone, you actually make everything more clearer and safer for everybody yeah, okay.
Speaker 1:So, um, let's have a look at who's involved, who the players involved here are. So on the pro side, you've got people, as you mentioned to me before, like Esther Anson, uh, and um, who you know it's been since she stopped doing that's Life, which was one of the best. We always still love watching that. I don't know, it might be a bit too young for you for that one, but you know I remember her saying, you know, that she felt lonely. She didn't. You know, she wasn't really engaging once she finished her career, wasn't really, uh, engaging once she finished her career. And then she set up the, uh, her organization.
Speaker 1:It's not age uk, is it something? Silver line, silver line, that's it, yeah, yeah, uh, which supports lots of people you know of a certain age and um holds a lifeline, as it were. So for her then to say, um, you know, I believe in this decision. It should be people's decision. I think it carries a lot of weight, um, because she will be a pretty well-informed player. On the other side, you've got um. I think probably people are and correct me if I'm wrong but are coming from different arguments social arguments, moral arguments, religious arguments, and even amongst those there'll be pros and cons, there'll be fors and againsts. So I mean, I know a friend of mine is a priest and he's quite pro you know, assistant, which is, you know, it's very forward thinking for a catholic priest, you know so.
Speaker 1:And because of the the people he has seen and and tended to in their last few days, because, you know, as a hospice nurse, you get to know quite a few different people in that respect. So, bearing that in mind, how do you navigate the argument? You know, how do you? What's the question I think I'm trying to ask here? You've got, so you've got, esther Ransom on one side, and who have you got on the other side who are anti?
Speaker 2:and why so? I'd say that to kind of simplify, oversimplify it, which is always going to lead into to complications, but to oversimplify it is on the anti side, the biggest players are kind of the organized, institutionalized religions, right? So the catholic church as an institution, the church of england as an institution, are opposed to assisted dying and some of the most vocal voices at the moment are the bishops. You know that there are bishops who sit in the house of lords. There are, you know, there are church of england bishops and they're the ones being the most vocal. And we also see that in the kind of that there are other campaign groups and you know, if you look at the campaign groups, um, that have kind of fought against assisted dying, especially since it's been, you know, a bill and it's been a real big topic in parliament. It's been organizations like right to life, which also campaigns against abortion and you know the society for protection of unborn children.
Speaker 2:You know that these, these similar kind of religious backs, occasionally evangelical kind of organizations that have that have really pushed against it. Now you know that there are obviously atheists and and non-religious people who um campaign against it as well through through. You know ideas of protecting vulnerable people and and you know that they're they still. You know a lot of people do approach this, even though they're on opposite sides, in good faith and with a fundamental belief that it's something wrong. But I do genuinely believe that the majority, the opposition, does come from at least a religious perspective.
Speaker 1:Okay. So I mean, that's interesting, isn't it? Because I'm not particularly religious, but the one thing that I would say is that I would want, if any bill going through, I would oppose it if it didn't have really strong safeguards, you know, and that for me, is the most important thing. So I do believe that it is. Uh, it should be. You know, your choice, your decision, your choice, um and yet at the same time, you're, is it? Oh, okay, it's, I'm still going on my side.
Speaker 1:Uh-oh, here we go I think I've just lost you I don't not quite sure why, but I'm still recording, so I'll see if you come back in a second. Okay, uh, you're back with me, are you?
Speaker 2:recording. Yeah, sorry, I got a notification saying recording stopped. Please refresh.
Speaker 1:I don't know why, though yeah, it seems okay now. Okay, okay, yeah, where were we?
Speaker 2:That's through me we were talking about where the kind of religious back to opposition and where to go from there. Yeah, that's right, and I was just saying yeah, so from a non-religious point of view.
Speaker 1:I would still be opposed to the bill if it was a shoddy bill and I think everybody would would agree with that, but so what is? The kind of arguments then coming from the religious side that this is this wouldn't be good, why, why do they not believe that this would be in the interests of individuals?
Speaker 2:Yeah, I mean that's a good question and I don't want to kind of necessarily speak for anyone with a religion, but you know some, it is is quite literally religious scripture. You know that. I think that I think there is scripture in the, in the quran, that talks about, you know, um life and death and and taking taking your own life. And then I know, I know, in kind of christian scripture it's this kind of interpretation of thou shall not kill means, you know, thou shall not kill thyself. You know that that's where it comes from essentially and it comes from different interpretations of like the commandments and things like that. But but I'll also say that I know for a fact that there are several suicides, um in the bible, in religious texts.
Speaker 2:You know it's a topic that's existed throughout history and attitudes have um to assisted dying have existed throughout history. You know, what's interesting is if you speak to kind of older doctors and you know, talk to them about this topic. I don't want to say it was common because it's very, but way back in the day you know a family doctor and I am talking, you know, more than a generation ago I am talking more than a generation ago If a loved one was in serious, serious pain at the very end of their life. The doctor might be asked by the family to you know, can you assist them on the way? You know what can you do, and everything like that.
Speaker 2:Now I think that's evolved because palliative care has evolved to make it better, to really reduce pain and suffering. And you know it's important to say right now, the majority of people in the uk will have relatively pain-free, natural deaths. But we're talking about the kind of small minority of people but still significant number of people who will die in pain and suffering despite the best palliative care. You know, some pain medication doesn't work for everybody. Some people are allergic to it. Some of the pain is more than just physical pain. It can be, it can be chronic, it can be about a loss of meaningful activities and autonomy and that's all there and so that that's what we're we're talking about when it comes to assisted dying is for those people who are, who are at the very end of their lives, should they be able to have assistance if they choose to and if it's their choice to die in a dignified and pain-free manner.
Speaker 1:Okay, I'm going to throw a spanner in the works here because you know I like to. So one of the first people I ever nursed and I was talking to somebody about this the other day I was about 17, 18, and it was a young lady who was around 35, and she'd got Huntington's Huntington's Crick. Now, by the time I met her she was being nursed in a hospital bed with cot sides and she kind of lost the capacity to speak, found it difficult to swallow but you know, and she would have spasms frequently and it was a really you know she's got no control over her own life or her own body.
Speaker 1:So one of the things about the assisted dying bill, which is a tricky one, is when they say they're going for if you have a terminal illness within six months. Now that leaves this poor lady who probably went on for another four or five years in in a really bad place. I mean mean, she was everybody's. I mean back then it was 40-odd years ago, and you know she was open to being abused by anybody who went into that ward. Ok, so, because she was so vulnerable, yeah, and she couldn't do anything. And it just is one of those things where you say, well, hang on a minute, does it have to be a terminal diagnosis, this? Does it have to be within six months? Or can you say, look when I lose capacity? Um, and that's another thing that's really problematic, isn't it? So you're also in that got muscular dystrophy and dementia. Yeah, uh, because dementia, somebody can go for years in quite a poorly state and not want to be there. So how do you approach that kind of angle of the?
Speaker 2:bill Absolutely, and that's where one of the biggest kind of ethical debates within the bill is happening right now. So, internationally, and again this is a bit reductive, but it's largely true that there's there's two kind of models of assisted dying, um, so the one is essentially the european model and that exists in belgium, the netherlands, um, switzerland, austria, spain, portugal, um, they're looking at it currently in france, although they've not changed the law yet. It's essentially, for they call it for anybody who is incurably suffering, so anybody who has a condition that cannot be relieved by pain or treatment and you know is going to cause their decline, that you know, essentially there's nothing that can be done to give them a quality of life that they themselves would deem acceptable. Um, there, right, and those people can have an assisted death, so in in the netherlands and belgium, that that person you described would be able to have an assisted death at the time of her choosing. And then, right, different models come out and kind of the commonwealth, for lack of a better word. So we're talking Australia, new Zealand, america.
Speaker 2:So the US state of Oregon was one of the earliest adopters of assisted dying and that's based around terminal illness, that's based around people who are already dying. Essentially, you know so, rather than a choice between life and death, it's a choice between death and death. It's just, you know, the people at the very end of their lives and even then it's the discussion that you've just brought up is where do you draw the line? So in the us state of oregon they went with people who have six months left to live or fewer, and that was based on everything from medical research. So that's when insurance used to pay out. Well, you know, like end of life insurance used to be. Yeah, so there's weird historical reasons why they ended with six months.
Speaker 2:But then, if you look at Australia, the first Australian state to legalize assisted dying says oh, you must have six months left to live, or 12 months. If you have a neurodegenerative condition so Huntington's, motor neurone, c's, parkinson's, those sorts of degenerative conditions you could have 12 months left to live, or fewer sorts of um degenerative conditions, you could have 12 months left to live off. Yeah, and then the kind of the next australian state to legalize went well, why the difference between someone with cancer and someone with a motor neurone disease? Why not make it just 12 months for everybody? And then one of the most recent australian states to change the law said well, why put a time limit on it? Surely it should just be anyone who's been given a terminal diagnosis? Because at the end of the day, when we focus on those time limits, we kind of focus on the wrong question in my eyes, because most people internationally who have had an assisted death, they wait until the last moment. And this idea of assisted death is no one wants to die right, no one wants to go down this path. It's for people who are already dying, who are already in pain, who are already suffering, for them to get to choose the terms and the timing and be in control of their death. And so it's quite obvious that all of these people would wait until the last possible moment. And just, I know I'm going on. But another really important thing is, you know, the person is always in control at this point.
Speaker 2:So I spoke to the wife of someone who had an assisted death in Canada and he had a form of kind of super nuclear palsy oh no, I think it was ALS, I think he had um and he chose the date of his assisted death. You know, he this is something he fundamentally believed in, he wanted, he wanted this assisted death. And then he got close to the date that he'd said and he said no, I'm I'm not ready yet. You know, even though I'm in pain and suffering, I want to spend some extra time with my, my new granddaughter. I want to spend some time with my family. I want more time to say goodbye. And so he had more time.
Speaker 2:And then one evening, next to his wife, he unfortunately nearly choked to death during the night. You know he had really difficult issues there and that was his limit. He said no, now I've reached the point. You know, I've really pushed this as far as I can. Let's set a new date. And they set a new date and he passed away.
Speaker 2:You know he died with his holding his wife's hand and on a day that he, that he chose and and for him, that's him taking control of the end of his life, but also having this backup option of, okay, if the suffering gets too much, if the pain gets too much, if just you know that the idea of choking to death or a really nasty end gets too much, then I have this option, this choice, and that's what it is for most people. Is that that, that backup? That just okay, I'm going to go through the process. I I can know that, just just, if it gets too much, I have this choice and I have this option and I think I think that's really important. That and that's that is something that I would want for myself. I can say right now, as a healthy person is, I would just want that backup option. I would want that choice yeah, I did.
Speaker 1:I mean, it's interesting you, you know you brought that up about the whole choice thing because that really wasn't and even today I think it's's the same thing it wasn't an option for most people at all.
Speaker 1:Because I remember when I was a staff nurse in my 20s there was a guy who came into our psychiatric unit admissions unit and he came in because the psychiatrist said he was depressed and he'd attempted suicide. And the way that he'd attempted suicide was he took his car into a field and did the classic pipe from the exhaust into the car. But he was found and resuscitated and then they put him into a psychiatric unit and interestingly, he said look, I'm not depressed, I've got cancer and he's got a big red nose and basically got cancer of the nose and he wanted to die before it became. He became so disfigured that his children and grandchildren would just go oh, you know that's too much for me. And they kept him in for, I think, eight weeks on antidepressants and we could all clearly see that he didn't have the classic signs of depression. He was making an actual decision. That's what he wanted to do and within a week of being discharged he took his own life being discharged he took his own life.
Speaker 1:So, you know, having the decision to be able to do that in a much more gentle way, maybe with his family around him, would have been, you know, a much more humane way of going about things. And talking about humane things we often see, you know, when I used to go into patients' houses, uh, who had, in the last four weeks of their lives and you're absolutely right, 99.9 percent of people passed away quite gently, you know, you stop eating, uh, because you haven't got the appetite, and then you know you sleep more, you, you know you stop drinking and then you know the times of being awake are less and less and less and you pass away. It's not, you know, really horrendous, but nobody, as you say, nobody wants to leave the party. But one of the things you know, one of the and we'll have all heard this is you wouldn't let a dog suffer like that, would you, and you'd put it down, and that would be, and we'd hear that a lot from the relatives.
Speaker 1:And then we would have to say, well, yeah, but you know that's not a decision that we can make, it's a decision that the patient has to make. And I remember various people saying can't you just take them into hospital and let them pass away and we said, well, no, because that that's their decision. If they want to die at home, that's that's what they want to do, and it always has to be the person-centered approach and I think exactly it's got to be with the assistant. Dying bill is and it comes back to what we were talking about with relatives maybe coercing their relative to take their own life or to even not to take their own life, but to be to say yes, please, you know, help me to die.
Speaker 1:It's such a woolly area, because there's going to be people who are genuinely saying, look, I can't bear to watch my husband or my wife suffer like this. And yet, you know, unless they've done a my Care Choices thing beforehand, you know they're stuck in that horrid world of not being able to be assisted, to die, you know. So, yeah, it's a tricky one, isn't it? I mean, it's a real tricky one. So how do you navigate? Also, the but yeah, I suppose it must be in the bill where you know somebody wants an inheritance, basically, and that's the motivation. And I know you get some very good actors actually out there who can say, well, I'm doing this purely for my relatives benefit, but so there must be mechanisms in that bill to stop that from happening. So what are they?
Speaker 2:yeah, so I I mean it's important to start with when we look internationally and again, this is another thing to bring up is is that it's funny how kind of british politicians and britain in general has approached this as if we're the first people to ever talk about assisted dying and the first people to ever, you know, have thought about this, when actually there are so many jurisdictions and countries around the world that have it, and so we can look at those international jurisdictions and see how it works. And, interestingly, the politicians kind of invited lots of experts into Parliament to give evidence before they started going through the bill, kind of line by line, and the evidence we got from america and new zealand and australia, from these doctors was actually most likely is the coercion comes from the other way, in the sense of you know that the, the, a family member, either is just not ready to let go and doesn't want their, their parent, their grandparent, their aunt, uncle, their husband to go and therefore, you know, tries everything in their power to actually block them. Or, again, sadly, sometimes the family members are quite religious. You know, you might have a very religious son or daughter or, or, you know, or mom or dad or something like that and they, they try their best to stop the, the assisted death, from happening. Um, yeah, so it's important to know that that's more. That's what we see internationally, way more common than the other way around.
Speaker 2:And then family members trying to push their, their family member, towards an assisted death, and so that the kind of the safety mechanisms in the bill around that essentially are, firstly, like the the patient is is asked so many times whether they want to go through this. You know there has to be an initial discussion, a first assessment, a second assessment before the, before the medication is administered. At every single step, the, the doctors and medical professionals involved, and you know this is alongside social workers and, if necessary, a psychologist. You know, if they're not sure about capacity, they can get a psychiatric assessment done. So there's so many times where the patient is asked and has to be asked. You know, do you want to go through with this? Is this something that you want? You know why do you want to go through this? It's all going to be part of the conversations that are going to happen over and over again. So that's step one. Step two going to happen over and over again. So that's step one step.
Speaker 2:Two it is somewhat you know, it has been a point of controversy actually when the bill is that, technically, family members aren't involved in the process and shouldn't be involved in the process. And I say technically in the sense of the doctor is encouraged to ask about family. And you know, have you spoken to your family about this? Is does your family know? Are they board? What are the conversations being like? That's going to be part of the process, right and again, in an ideal world, you know, the family members are there at the last moments and they can hold hands and they can be involved. But there's always going to be people who don't have that relationship with their family, who all have a difficult relationship with their family or certain family members. And for that reason the bill has to be and we've been very clear on this as a campaign group patient-centric, person-centric. No one else should be able to influence this decision. Stop the decision. Be able to influence it. Because of that reason, because of difficult family dynamics, that that might exist.
Speaker 2:So so not to discourage or encourage? Yeah, both, both ways. And I for me that's so personally important because, again, like I'm such a I, I really am so non-religious, and luckily, but most of my family is, but I, you know, I can again, I don't know if this is selfish to say but if one of my family became really religious and and tried to kind of block my assisted death or block any health care, you know I would find that deeply and truly, truly wrong and I think that applies to anybody going through the assisted death processes. You know, we do want the family involved, like in a best case scenario, the family is there and behind the person and supporting them every step of the way. But it has to be the individual's decision and we have to have safety measures to make sure it's the individual's decision yeah, yeah, I mean that.
Speaker 1:yeah, I mean that it almost links, doesn't it, to the pro-life groups, um, who a lot of people would say, well, well, it's not your business what I do with my body, and I think that's the. It's difficult because I can see that people are pro-life purely out of almost altruism, not necessarily religion, because they truly believe that there should be no abortions at all anywhere, ever. And yet it's always circumstantial, just like assisted dying, because if there's rape, incest, all sorts of different things where there's a justification, if you like, that all has to be taken into account. You would have thought, wouldn't you? Yeah?
Speaker 1:And certainly with the individual decision. It has to be, as you say, I think, very much based on their own decision rather than influenced by anybody you know, because yeah, it's a tricky one though, isn't it?
Speaker 1:I mean, we've had people who have in the past said no, my relative, you know, can we just stop with the syringe driver, can we just add a little bit extra in the syringe driver? You know they say no, no, we can't do that sort of thing, you know. By the way, on the syringe driver things, I will just say there's a lot of people who think that once you get a syringe driver, that that's the way to that. People are being killed by the nurses and you know that fundamentally goes against what nurses do. So you know, as in one of our previous interviews I think, with Becky Ry riggs she was in syringe driver is there for when you can't take medication, you know. So you wouldn't want to leave somebody unmedicated. So the syringe driver goes in and it just gets the medication over a course of 24 hours and every 24 hours it gets refilled and reassessed. So it's just one of those things. So in the actual mechanics of assisted dying, how is somebody assisted to die?
Speaker 2:Yeah, and that's a good question. And again, that's where politicians have been, you know, really debating and going back and forth on that exact question. So the answer right now is the vast majority of people will be prescribed a life-ending medication and that medication is deliberately not being put on the bill because you know that's not how law works. You wouldn't want a cancer. You know you wouldn't want cancer medication or cancer treatment to be on the law and then every single time the treatment needs to be updated or changed, you'd have to get a new bill, a new part, and that's not how it works. So it's deliberately not on the bill.
Speaker 2:But essentially I, for example, in in dignitas and switzerland, you know, in the, the um assisted dying center. There they it's two medications it's one to stop vomiting and the second is essentially a lethal dose of um anesthetic, so the person falls asleep and then eventually their, their heart stops and then they're. You know that then they die essentially. So something like that is what's going to, is what the majority of people will have. They will be given this medication to take. A doctor will be there to to watch them administer it and they will take it themselves.
Speaker 2:For a very, very small minority of people and we are talking for people, again, with neurodegenerative conditions or or who you know can't swallow or can't physically take medication themselves um, a device will be able to be set up, you know, like a syringe driver or, or you know, there are various devices that exist, again in switzerland and other countries that we look at, but again the law where we've gone down in the uk is very much self-administration, so the doctor cannot administer the medication. So even for someone using a syringe driver, they would be, they would need to be the person that makes the movement, that does the act, that does the action of administering the uh, the medic, the life-ending medication right, so, and that's that that's going to be a tricky area, I think isn't it yeah, I think it'll be tricky, but again to stress the point that we're not new when it comes to this, you know that these devices exist in switzerland and in australia and new zealand.
Speaker 2:You know that. Or in new zealand you're allowed to have a doctor administer. They went down a different route to where the UK had gone down. They said and actually in New Zealand it's a choice and most people choose to have the doctor administer the medication. You can imagine them feeling more comfortable than taking it themselves.
Speaker 1:But it could be quite stressful not knowing if you've got the right dose or exactly doing it the right way, doing it the right way.
Speaker 2:But the, the swiss, you know, because I've spoken a lot to, I've spoken a lot to dignitas in switzerland, because politicians are now asking me you know, how does it work? What should we what? You know, what sort of route should we go down? Yeah, and in switzerland it is pretty simple that you know it is this kind of anti-vomiting drink and then it's basically three times the lethal dose of anesthesia and that has out of you know, dignitas has done well over 4,000 cases and every single case the person has died peacefully. They've gone to sleep and then they've died.
Speaker 1:When you say over 4 000 cases, just to get a kind of scale about how common this is, over what sort of period of time is that so that 4 000 cases was that in a year or 10 years or that's quite a long time for.
Speaker 2:So dignitas, actually, because dignitas is specifically for, uh, foreign nationals. They don't do, they tend not to do, any Swiss residents there it will be, for then it has to take people from countries that do not allow assisted dying Again, that's why it's kind of a household name in that sense. So that's 4,000 over, I think, almost 20 years, quite a long time. In the UK, again, a lot of statisticians are looking at this. It's really hard to know because the rates of assisted dying are based on everything, are based on a person's religion, their life outlook, how they view the world, what their terminal illness is going to be, all those sorts of factors.
Speaker 2:So the very low rates that we can compare is in Oregonregon in the us it's just under one percent of all deaths are assisted deaths. Um, and the high rate is there's a certain province in canada where I think it's around six, seven percent now of assisted of all deaths are assisted deaths. So we can apply that to the uk and look at the law that we've got, and so we think in the first year it will probably be around 1,000 to 2,000 assisted deaths a year and again that will be about 1% to 2% of all deaths in the UK will be assisted deaths. So again, it's a minority, it is 99%. 98% of people are going to have peaceful natural deaths in the UK and 1% 2% are going to say peaceful natural deaths in the uk and one, two percent are going to say no.
Speaker 2:I want this decision, I want this to be on my terms. I want to to um, take the life-ending medication and then go through the process, and I and I think that you know that that that sounds right. You know, if you, if you, if you think about the other people, you know absolutely, would I say, if I went into a room of 100 people, one or or two of them, if they got a terminal diagnosis, would want to end their life on their own terms. That sounds very sensible.
Speaker 1:Yeah, I think you're right. You know, I'm trying to think under what circumstances I would personally want to make that decision and I'm very much.
Speaker 1:I never want to leave the party, you know they came out with a pill that gave me another hundred years of good health, you know I'd be there swallowing the pill, but straight away, yeah, um. So you know, and I, you know I'm gonna go down the suicide route for a second. Uh, we were, uh, driving back from scotland with the, the kids in the car, uh and uh, all the traffic, you know, by concertinas it stops, and it turned out that somebody had thrown themselves off a bridge awful, um and uh, and committed and not committed, and ended their life that way. Um, I mean, it must be a really tricky thing. You must be absolutely sure about what you want to do, to have to make that decision. So, uh, who is it that makes that judgment call?
Speaker 1:Is it a psychiatrist? Make sure that you are mentally, healthily well over a period of time, because you, your mind, can change on. Yeah, I know people who change their mind or they change their socks, you know. Um. So where is that consistency over a period of time? Is that in the bill as well?
Speaker 2:yeah, I think that's why it's so important, because I mean, if you compare those cases, you know of a terminally ill person right now who wants to take their own life. You know they aren't going to talk to their doctor about it, they aren't going to go down that route. And once you know, once they go down that route, it's very, very hard for them to go back. The first thing they do is they have an initial conversation with a doctor and that doctor, again on the law by the law, has to talk to them about have you looked at your local hospice? Have you? You know, order palliative care? What treatments have you tried? Can we help you try this new treatment? You know, again, there's a misconception that the doctor's role is to try and get this person towards an assisted death as quickly as possible. But no, obviously the doctor's role is to try and get this person towards an assisted death as quickly as possible. But no, obviously the doctor's role is still to be.
Speaker 2:A doctor is to see what they can do to, to, to palliate pain and to and to make the person's life comfortable and and worth living. Yeah and again. So I've spoken to doctors, loads of doctors internationally now, um, who assess people for assisted dying and who administer the medication, and the vast, vast majority of assessments are actually quite straightforward. It will be somewhat. The vast majority all over the world is cancer, is cancer patients. It's very, very clear that the patient has spoke, you know, has. It's just crystal clear. You know that they, they, the doctor will ask you know, when, when did you first think of you know sister dying or think of this? And the person will say you know, this is something I've believed in my whole life. It's absolutely, you know, like it's fundamental. And now I'm at the stage I want it. And the doctor will you know that there's nothing to indicate that the person has depression. There's, there's no history there, there's nothing there. It's really obvious that the person wants this. And then, yeah, if it's not obvious, you know, maybe the doctor will look at the patient files and see maybe a history of depression or a history of of suicide attempts or any anything along those lines, at which point the doctor can choose to um send them for a psychiatric assessment. As with anything, if with any medication, with any source of treatment. If the doctor isn't sure, they can ask for a second opinion, they can ask for a consultation and again, as part of this bill, they then have to refer them to a second independent doctor. So those doctors haven't spoken to each other. That second independent doctor makes the same assessment. So that person's capacity and their mental ability and their medical history is being assessed over and over and over again. And when it comes to kind of the administration's the very final step, again that doctor has to ask do you understand what you're doing? You know what? What are we doing here? Why are you doing this? Do you want to go ahead with, with what we're talking about? And again, you hear from the most recent australian doctor that I spoke to. The last patient they did was literally like yes, yes, you know, absolutely, I, I, this is fundamentally something that I want for me. No one. You know. The australian doctor was like you know, has anybody pushed this towards? You know, has anybody, has anybody encouraged you towards this path? And then they replied. The patient replied no one would even dare talk. You know, like this is, this is something that's for me and you get that. You get these stories like that.
Speaker 2:One of the stories that was shared in parliament that was really powerful was a was a british couple in spain so spain legalized, assisted dying relatively recently, I think in 2021, and so obviously there's quite a few british nationals that live in spain, and so that this wife, so it was in parliament and said my husband had his cowboy boots on in the hospital bed because that's, you know, he felt like a cowboy. He was a cowboy like. That's how he wanted to go, and he held my hand and he'd gone through this really extensive process. And, you know, he went on his terms and the doctors came and said you know, is this something that you want? And he said I've prepared for this, I know what I want. This is the right choice. I want to go peacefully, I want to go in a dignified manner, and he chose that.
Speaker 2:And you know, the wife still has to grieve for the, for the loss of her, her husband, and the loss of her life, but her last memories of him are him in his cowboy boy. It's holding his hand, saying I love you before he dies. And that's, you know, if you compare, if that same man lived in britain rather than slain. What would the end of his life have looked like? Very, very different? And what would his wife's memory, last memory, be of him? Very, very different. And that's fundamentally why the law needs to change is for those people and for those families whose last memories of those loved ones can be beautiful and dignified and peaceful, rather than unknowing, potentially in pain, potentially with suffering.
Speaker 1:You know that is something that when I was a hospice carer and as a nurse, we wouldn't want to see somebody have a good death. We always said we wanted to see them have a beautiful death if we could so surrounded by family, if they had family. But you know, it being gentle, slow, easy passing, and that, I think, is what probably everybody really, at the end of the day, would really want to have for themselves and their loved ones. Listen, it's been amazing talking to you and covering these subjects. Where can people go to to look at the different arguments for and against? Is there a website or what? They just find more?
Speaker 2:information now MyDeafMyDecisionorguk or just Google MyDeafMyDecision. I mean to be perfectly honest, we will have the pro arguments. We're not going to have the anti arguments. We're the campaign group to try and and change the law. I mean a lot like that. This is, this has been in the news and will continue to be in the news. So you can look at kind of trusted news sources, whichever one you go to, for kind of for both sides. The arguments.
Speaker 2:You know the bbc legally has to be balanced. So whenever the bb quotes me, they normally quote someone who disagrees with assisted dying and the same. You know every single other TV appearance or anything like that normally includes the other side. But if this is something that you're passionate about, the law won't change and you know the law could still fail. The bill could still fail if people aren't passionate enough about it and if they don't campaign about this. This isn't a sure thing at all. Even though Britain's so late to this, it might still fail and it might still be illegal to have an assisted death. So if you are passionate about this, get involved and write to your politician and say join our rallies and say this is something that I want for me, this is something that I would want for my family. You know I believe in a dignified death. It's my death. It's my decision.
Speaker 1:Yeah, okay, well, that's pretty clear, I think so. So listen, nathan, what we'll have to do is have a chat If the bill goes through or doesn't go through, and look at you know later on, maybe in six months time, what are the next steps. Yeah, you know, if the bill has gone through, what are the next steps, you know, and how is that getting implemented? How is it being served? Uh and um. And if it doesn't go through, what are the next steps then?
Speaker 2:as well, Because the campaign, I'm guessing would not stop.
Speaker 1:It would just be kicked into long grass for the politicians, and therefore you'd have to start all over again, as it were.
Speaker 2:Yeah, absolutely.
Speaker 1:Is that right?
Speaker 2:Yeah, yeah, absolutely. There's always going to be a campaign for this. Every single time a terminally ill person has a terrible death, a new campaigner is born. You know someone, someone.
Speaker 1:The law has to change yeah, yeah, okay, well, listen, really nice talking to you. Thank you for explaining things to us and, um, yeah, let's catch up in six months time great.
Speaker 2:So thank you. Yeah, thank you very much thanks a lot.
Speaker 1:I'll stop the recording there.
