Media Storm - ARCHIVE Assisted dying: What do terminally ill people think?

Episode Date: November 18, 2024

The End of Life Bill being debated in UK parliament marks a historic moment for a country with one of the most punitive approaches to assisted dying people in the liberal world. But here at Media Storm, something confuses us about the debate now unfolding in the news, which is the distinctive lack of voices of people for whom the bill is actually designed. People who are terminally ill. So we bring you back an episode dedicated to platforming people who are dying and their loved ones. Theirs are the testimonies anyone refusing legal reform must answer to. The episode is hosted by Mathilda Mallinson. Learn more about your ad choices. Visit podcastchoices.com/adchoices

Hi listeners. Yes, it's still our series break, but I've been pulled back to the mic by some big news in British policy on a topic relevant wherever you are in the world. The End of Life Bill published this week marks a historic moment for a country with one of the most punitive approaches to assisted dying in the liberal world. On Monday, Labour MP Kim Led Beater released the full version of her controversial assisted-dying bill, due to be debated in Parliament later this month. I say controversial, not because of public outcry. The British public consistently polls around 70% in favour of legal reform, but because of its handling by press and politicians. If passed, this bill would legalise medically assisted dying

for terminally ill, mentally competent people with six months' to live or less. It specifically excludes people with disabilities or mental illness alone. Two doctors and a High Court judge must independently approve, spreading the decision over a minimum 21 days. And anyone found guilty of coercing someone to apply faces up to 14 years in prison. MPs will not be whipped to vote along party lines. The government has pledged to remain neutral, leaving MPs free to vote how they please. It is the first time assisted dying has been debated and voted in the UK Commons in nearly a decade. But here at MediaStorm, something confuses us about the debate now unfolding in the news,

which is the distinctive lack of voices of people for whom the bill is actually designed. Our only way to make sense of this is that the British are terrified. of looking at death, but some people have to. And by refusing to hear them, we are abandoning them to do so alone. And so today, we bring you back an episode dedicated to people who are dying or have died and their loved ones. There's are the testimonies we must not look away from, and that anyone refusing legal reform must answer to. Thank you for listening. The Times of New News has been given the clearest signal

yet of a monumental change in the law around how we die. I'm personally in favour of changing the law. For some people, the moment of your passing is a matter for the almighty. I just want the choice. I just want all options. Why can't we treat death with a certain amount of humanity and dignity and decency

and God forbid maybe even humor? A warning, this episode contains descriptions of assisted diet. in suicide, including methods of suicide, although suicide is a tricky term in this context. These details are key to understanding the topic, and it is in the public interest to know what many people suffering with terminal illness resort to in lieu of legal assisted dying. For anyone struggling with suicidal thoughts, the Samaritans Helpline is open 24-7. Just call 116-123.

Okay, it's recording. Would you just start by introducing yourself? So I'm Kit and I'm 38 years old. And how are you today, Kit? I'm not too bad. I've got stage four breast cancer so for me, every day is always going to be a slight challenge. But today's one of the good days. I'm glad to hear that.

And would you just tell us a bit about you? What makes you happy? Anyone who knows me, the first thing that they'll tell you is I am obsessed with animals. I'm happiest when I'm out in the middle of a huge field. or a salt marsh by the coast, and all I can hear is the occasional birds screaming its head off as the sea bashes against the shore. For me, that is just pure and utter joy.

So when you look at the future, how do you feel about the road ahead and about the options that you have available to you to help you deal with your diagnosis? When I look at the future, to be honest, I see a great big blurry undecided question mark. Nobody knows how long I've got to live. So far, I've outlived three best before dates that I've been given by the doctors.

But I'm very conscious of the fact that one of these days, either the drugs are going to run out or my body's going to give out because the problem with the chemo drugs that I'm on now, they batter the cancer, but they also batter the body. I dream of a future where assisted dying is actually an option. option for people like me that we get the option to die how we want why is that so important to you what what might you want that you currently can't ask for i want to fall asleep in my husband's arms and not wake up i just want a world where that's possible i don't want to die lying on a hospital

bed. I don't want to die drugged out of my head, not really knowing what's going on. I don't want to be in a situation where my husband is terrified to go to the toilet in case I stop breathing. I want the ability to just say goodbye to the people that I love and then just cuddle up and go to sleep. The fact is that's not allowed under our current system. I like to delude myself that I've got more rights than a dog in this country. If a dog was left to die of cancer, you give that dog a cuddle and let the vet give it an injection. I've been on a hospital ward. I actually lost my voice because I couldn't stop screaming from the amount of pain that I was in.

I don't fully understand why so many people would faint from horror at the thought of hearing a dog screaming in agony, but have no real issue with the idea of a human doing that. In the UK, as in some US states, Italy, Eastern Europe and every Latin American country except for Colombia, to name a few, assisted suicide as it's called in the law, is illegal and anyone found guilty of assisting someone's suicide. faces up to 14 years in prison. Many prefer the term assisted dying in the context of terminal illness. Euthanasia, in which the fatal act is made by a different party, is regarded as either manslaughter or murder. The maximum penalty is life imprisonment. Kit, if you were speaking to someone who opposed your right to an assisted death, what would you say? When people say,

you can't have an assisted death that goes against our system of beliefs. Many of them would say that I'm just suicidal, that I don't want to live. The reality is, I'm so desperate to live that I sit there with a port in my chest, having poisoned pumped into a vein right next to my heart, in the desperate hope that it will buy me an extra few months of decent living. I lived my life to the full. Even this year, I went to Wembley and I saw the lionesses win the European Championships. For me, the difference is between living and existing.

If we don't own ourselves, then are we any better than slaves? There's a poem that I absolutely love called Invictus. I am the master of my fate. I am the captain of my soul. Who wouldn't want that? Why shouldn't people have that? I think it's going to be one of the defining battles of the 21st century. The sort of final clashes, so to speak, between the idea that the state or a church or another body can control you or the idea that you've got individual liberty and freedom.

Oh, I sound like an American. Opponents to reform focus on the sanctity of life and risk of abuse, But a scary phenomenon is happening in its place, as terminally ill people feel forced to find other ways to end their lives. When Gareth Ward was 31, his father was diagnosed with prostate cancer. Basically, my dad tried everything and it was just getting worse and worse and worse. Hormone therapy. So around the 10-year mark, it stopped working. Chemo.

It was really having a debilitating effect on him. It was very bad. Experimental drug trials. They took two of his teeth out, and then they didn't even end up giving him the drug. They decided it wasn't for him. So he literally had his teeth pulled out for nothing. And organ removals. Then it spread into his pancreas and his spleen and he had to have those removed, which was quite a horrific operation.

You know, they literally cut him from left to right. They took quite a lot of him out. So, yeah, it was about a 15-year spiral into utter misery. He just got too much in the end. And to be honest with you, I can understand why. You were living with him at this time. Did you start to suspect that he might not want to keep living? Did he talk openly to you about that?

Yeah, yeah. He talked to everybody openly about it. He said it from day one. My dad's quite an outdoorsy guy. He always had shotguns. As soon as you got the diagnosis, he said to me, if he gets too much, I'll just shoot myself. I actually think that having his own means out actually contributed him to going on for so long. I believe that.

A hundred percent believed that. Honestly, he was so positive. He was so strong because I think he knew that he was in control. He had an element of control. But how was that for you and your family when he did? actually do what he said he was going to do? So I was here. I was working at home and he just phoned me up and said, right, that's it.

I got the shotgun. I'm going to shoot myself now, right? And he put the phone down. So I phoned him back. He didn't speak. And then I could start hearing some clicking noises. And I thought, I know what I'm going to hear next. And I know I don't want to.

So I put the phone down and I phoned the police. But my sister beat the police there. and my sister believed that she could stop him. So she went into the house calling his name and saw him sitting up in a garden chair with a gun in his lap and basically minus his head. Obviously he phoned me. That was difficult, but I didn't have to see him.

Is there any part of you that felt relief? Yeah. Yeah, yeah, totally. These are not the right words. I'm glad he's dead. I wish he was alive, but not like that. You know, it was horrible. It was really, really awful.

If a sister dying was a thing, right? Me, my sister's, our family, we could have all come to terms with it. He wouldn't have had to have sat in the back garden and blowing his face off. My sister wouldn't have had to have seen it. Gareth, you said to me what your father did. It's not suicide. But under UK law, it is. Why do you think that it's important that we distinguish suicide from what your father did?

It isn't suicide. It's like a mercy, if anything, you know. My dad didn't shorten his life. He shortened his death. He was dying anyway. He literally was dying in front of our eyes. You know, he just wanted the pain to stop, the suffering to stop. My dad coped with life-changing pain for as long as he possibly could.

Then he put himself out of his misery. Gareth, can I ask if you're happy to include it? What is your father's name and how do you think he would like to be remembered? My dad's name is Norman Ward. It was a good guy. He was a simple man. He was a builder, basically. If we were able to use his story to change the law, I think he would like that a lot.

Something else that I think he would like. My sister was actually called by the hospital last week, and the cancer that he's got had in his lungs, there is globally no record of. It was unique to him. He would love that. He would love that he had some ridiculously unique cancer. That would make him laugh.

It is estimated up to 650 terminally ill people take their lives every year in the UK. Targeted data like this is thin, but early findings from the Office of National Statistics show people with life-threatening conditions are more than twice as likely to end their lives as others. But not everybody faced with terminal illness has the means or willingness to take their own life forcefully.

There are likely to be as many as ten times failed attempts. Anne Norfolk's husband Patrick was one of them. Right from the very beginning, he was determined that he would be able to take his own life and he wouldn't see the diagnosis through to the bitter end, knowing that it was a horrible illness and they have sort of no control over it whatsoever. In 2008, he was diagnosed with motor neurone disease, a degenerative condition in which nerve cells in the brain and spinal cord stop working, leading most likely to full paralysis. It tortured him every day. He was on the internet, trying to find ways to actually take your own life. Because it's illegal, he was so concerned that I was not to be involved. He had to open a bank account in his own name in order to be able to order things.

He couldn't turn to anybody for help. The doctors weren't speak. to you. The nurses won't speak to you. There's nobody who you can even talk it through with. You're living on a knife edge, really, hoping that nobody finds out. A day came when he said, really, I have had enough, but he didn't want me to be anywhere in the vicinity. So we said our goodbyes, and he went off on his mobility scooter. And I went off to meet a friend, so I could genuinely say I wasn't anywhere in the vicinity, although I knew what he was doing. Sadly, he wasn't able to do as he had planned. He just wasn't by that stage strong enough and capable enough. It was a very sad reunion. The only option then was to go down the Dignitas route,

which isn't easy. Dignitas is a non-profit organisation in Switzerland where physicians assist people with terminal or severe illness to bring about their deaths. Pre-pandemic, approximately one British person a week died with assistance in Switzerland. It is very costly. It costs about 10,000 pounds to actually go and see them. And that is awful that people here are often prohibited because of lack of funds to be able to do that. This is an issue that came up with Kit, who we met at the beginning of this episode. It's a class divide. Many of these people in Parliament and the lords who oppose assisted dying. If they wanted to, they could afford to go to Dignitas. We Whereas for the vast majority of the country, especially during the cost of living crisis,

a minimum bill of £10,000, it's just out of reach. It is just so barbaric. When you are diagnosed with a terminal illness, you shouldn't have to go to these lengths to go out of the country with all that that entails. What did you make of Dignitas? Did it feel safe? Did it feel trustworthy? They are lovely when you get in touch. They are fabulous. It is such a change. For once you find people who can speak to you and speak to you seriously. The safeguards are there.

They do film it all in Switzerland because it has to go to the Swiss authorities. And also Pat had to repeat his name and that he knew what he was doing. If he hadn't have wanted to at any stage, he didn't have to go through with it. Gosh, and how was that trip accompanying your husband to what would be his dying place? It was so perfect. We were extremely lucky because the weather was fantastic. We'd arranged a lovely hotel. We had four days of such a happy time in tragic circumstances. You should be able to make it as light and as happy as you possibly can. And we were able to there. The actual process is lovely. They brought the drug that you have to take. And he took the draft and swallowed it down in one very bitter. Then he said, started to say thank you to Arthur one of our attendees. He never got his sentence finished before he'd slipped away into a sleep, which was lovely. His head lulled on one side. There was nothing unpleasant. Anne, what would you and Patrick have liked to be different about his death?

The biggest thing, if we'd have had this insurance policy that the law here was you were able to be helped to take your own life when you have a terminal illness. It could have been so very different, not having the distress that you didn't have to try and find some way of taking his own life. He wasn't able to really say goodbye to friends and family because we were so concerned that we wouldn't be able to make the trip because we would be stopped from doing so. It's wrong. And when you got back, you had an unpleasant surprise, didn't you, Anne?

Will you tell us about that? I was by myself in my house. The police came to interview me and it was quite frightening really. The police did decide that it wasn't in the public interest to prosecute me. I couldn't help but think what a waste of their time, resources, efforts when they could have been protecting, helping somebody else who really need it. And not just time, that must have been really frightening.

It was. Yes, it was. but I was so, if they'd have hoiked me off and decided to prosecute me. I wasn't frightened about that because I knew that we didn't want him to have to suffer any longer. So the current law really is forcing people into impossible positions. We're essentially forcing dying people to choose between suffering, suicide or Switzerland. This is Ellie Ball from the charity, dignity and dying. She's here to give us an overview on assisted dying laws in the UK and elsewhere. Across the UK, there's essentially a blanket ban on assisted dying.

There's a specific piece of legislation in England and Wales, the Suicide Act. Essentially, when taking your own life was decriminalised, it made assisting or encouraging someone else to take their life a crime. And that's the legislation that governs assisted dying in England and Wales. That was 1961. That's six decades we've had this legislation. It hasn't been updated. if you were to assist or encourage someone else to take their own life,

you could go to jail for up to 14 years. You could be prosecuted even for helping someone get to Dignitas to have an assisted death. So that's the law on paper, which is quite extreme. But in reality, does anyone actually get prosecuted for this? It's very rare for people to be actually successfully prosecuted for these kind of crimes, but that doesn't stop people being questioned and investigated and indeed have cases go to trial. And that's a source of huge stress and anxiety and trauma for people.

Just a couple of years ago, there was a case of Mavis Eccleston, who was a woman in Herates. She'd been married to her husband, Dennis, for, I think, over 60 years. He was sadly diagnosed with terminal bowel cancer. Together, they tried to take their own lives. She survived and was then charged. with his murder and manslaughter. So she was carted off from hospital in her nightgown,

spent 30-odd hours in jail, and then had to endure 18 months of hell waiting for this trial to happen. Unfortunately, the jury unanimously found her not guilty of both crimes. Specifically, what change in the law are groups like dignity in dying advocating for? We are campaigning for a change in the law that would allow people who are terminally ill

in their final months of life, were fully mentally competent to request assistance from a doctor to end their own life. I suppose critics would point to risk of abuse or exploitation, for example, by family members who stand to gain from life insurance or who want to rid themselves of someone they see as a burden or expense. How would you respond to those voices that say changing the law is going to come with all of these added risks of abuse and exploitation? Well, I'd ask those people to look at the reality under the current law, and the fact is there are no safeguards to protect against someone being encouraged to stop for life-sustaining treatment or take

their own life. The fact is that bringing in assisted dying legislation would bring greater safety, scrutiny, transparency regulation to the kind of wild west situation we have at the moment. Ellie, will you just give us a nutshell summary of what laws on assisted dying look like elsewhere around the world. Over 200 million people around the world have access to some form of assisted dying legislation. Assisted dying is a choice for terminally ill, mentally competent people. That's in place in 11 states across the US, all states across Australia and New Zealand. Then there are broader laws that are open to people who aren't necessarily terminally ill in Canada, Belgium, the Netherlands, Luxembourg, Switzerland, now Spain, Colombia and more and more European countries

are looking at this. So Germany, Austria, Portugal. You know, the march of progress is undeniably in one direction and that's towards giving people a proper say over their death. And am I right in thinking that reform is actually happening in some areas of the British Isles, just not in Westminster? Scotland is currently considering an assisted dying bill. We've just moved into the phase of drafting a bill. There are proposals being looked at in Jersey. I don't think there's one minister now in Jersey that isn't in favour of it. And in the Isle of Man.

We'll be launching a public consultation within the next two weeks. So we could have a situation within the next few years where true end-of-life choice is a legal option for some Brits, but not others. MPs have to face up to the fact that maintaining the current law is also a decision. That's an active choice that they're making to maintain. legislation that we know is dangerous and has serious patient safety implications as well as just being deeply un-compassionate one of the main arguments against reforming the law on assisted dying is what exists in its place palliative care a type of medical care designed to improve quality of life and mitigate suffering for people with serious complex and terminal illnesses

it's important to say that palliative care can be a brilliant option for many people I'm Julie and I'm the bereaved mum of twin daughters. Their names of Francesca and Josephine and they were diagnosed with a life limiting condition when they were just three and a half. Julie Kembri's twin daughters, Francesca and Josephine, died in their teens from San Felipe, a rare genetic metabolism disorder. I asked Julie about her experience of palliative care. When I think of children's palliative care, I think of a team around us. I think of them helping us, giving us, giving us advice, medical support for as long as the girls needed it, the team was around them and actually the team grew responsively. I feel really sad when I hear in the media very often that everything's

boiled down to just the death of a child, which is not the point. The point is when you're given a diagnosis, whether that's a short or long time, to make the absolute most of that time and to give your child the best quality of life that they can have. We often see media narratives around palliative care that pitch parents against medical teams and health providers. But it doesn't seem like you felt that at all. No, there was nothing of that. Things aren't perfect. Things will never be perfect. If your child is going to die, life is not perfect. And you do not forget that that's going to happen. But we is to have things like family days and Christmas parties through Jesse Mae Children's Hospice at Home service. And that was great to meet other families who understand.

stood what life was like. We just could get on and have a chat. We weren't explaining, you know, what was happening with us because other people were having similar experiences. You know, a number of years have passed since the girls died and I look back with just a feeling of love and appreciation that they were in our lives and appreciation for the team that helped us to cope because we would not have coped on our own to have hospice and doctors and nurses and carers, a huge team, a whole community around us. They became our extended family. And so I think what we see in the media around high-profile cases is not what most families who are going through a children's palliative care team experience are probably receiving and certainly what we

receive. Perhaps unfair and unhelpful media narratives are one reason why palliative care is underfunded. Perhaps it's our fears of talking openly about death, but palliative care in the UK is pretty dependent on public charity, with only a third of funding coming from the government. There is significant inequality in access to services, leaving some 100,000 people to give the most conservative estimate without the palliative care they need every year. If palliative care is the best option for people facing death from severe illnesses, why is it so overlooked? We don't talk about death a lot.

Death is still very, very secretive. Dr. Fenella Craig, children's palliative care consultant at Great Ormond Street Hospital in London, says a lot of this is to do with the stigma that surrounds any conversations around death. This stigma even carries over into the medical sphere. Professionals will sometimes say, oh, it's not time for palliative care yet, or family will say, no, we don't want to meet palliative care. That stigma prevents people from having access to the support that's going to make a huge

difference to how they're living their life. Wait, so do you actually mean that people aren't getting referred to the care they need or are actively choosing not to have the care they need because of its associations with death and terminal illness? Yes, yes. We always say that palliative care is one service that people never want to be referred to, but actually they also never want to be discharged from when their health care. gets better. You know, there is evidence in adult studies that people receiving palliative care

actually survive longer than those who don't receive palliative care. For this reason, Finela says it's essential to reframe how we think about palliative care. People don't realize that palliative care is about living. The big misconception is that the focus of palliative care is death, but actually the aim of palliative care is to help people live as well as possible. I always think people, often people talk about their lives being shattered when they get a palliative care diagnosis. And I one of the things that we can do is pick up those pieces and put them back together again and actually give them a chance to carry on living. That to me is a really big priority of palliative care. While palliative care were available is excellent for many, the reality is it doesn't work

for everybody. Assisted dying was debated in Parliament a few months ago and I was outraged. some of our politicians were so clearly under the opinion, palliative care was the answer. Palliative care would not have helped Anne. Warwick Jackson's wife, Anne, died of peritoneal cancer in 2020. Anne's was a cancer that pressed against her lungs, steadily, slowly, suffocating her. We video call, and the first thing I notice is the photo hanging behind Warwick, of a small silver-haired woman with a pixie cut, watching over his workstation. I would have appreciated some more frank conversations.

Medical people know the way that cancer sufferers are going to die. They've seen it all before. I think everybody was trying to be too kind to us. If I knew then what I knew now, I would have wanted to have had the conversation with Anne that we get on a plane and go to Switzerland. By the time the penny dropped and we realised that it was not going to be anything like we were told it would be. It was too late.

We couldn't go to Plan B. And consequently, she had the most appalling death. You did have at-home palliative care. How much of a difference did that make? Palliative care comes in two flavours. There's pain control and there's sedation. But when you're getting short of air, No amount of pain control will actually fix that for you.

That's not a pain issue. It's a suffocation issue. What about sedation? The nurse commented that the levels of sedative in her body were as high as would normally be used to knock out a fully grown man. Anne was like a little wife. She was five foot one. It didn't sedate her. She was lucid throughout almost her entire ordeal.

In prisons around the world, one of the torture methods that used is waterboarding. It simulates drowning. It simulates suffocation. Maybe it goes on for hours, I don't know. This experience that Anne went through took four days and four nights, gasping, fighting for every last breath. That's even worse than waterboarding. By the way, I get a little bit emotional sometimes. So I'm sorry about this.

That's okay. Two years now, and you would think it would be a bit easier, but it's not. We need to be changing the way we do things for those that aren't so lucky. It's too late for Anne now. But there are people dying all the time. That's kind of what brings us to hear, Matilda. Warwick, thank you so much for sharing. obviously this is still very emotional for you. How much do you feel the fact you witnessed

and suffering in this way? How much do you feel that that has affected your ability to grieve and to process this loss? Well, that's a really good question. When it's going on in your own home, you get the full 24-7 experience and it comes at you relentlessly. Very quickly, those shocking memories of the last stages of somebody's death, completely eclips, all of the good memories that you've had. I wasn't really able to go into the lounge for the first year. I couldn't go in there without hearing a struggling for breath, hearing a call out, oh God, you know, which was like, just take me. At its worst, we actually positioned electric fans to make a current of air flow at her face.

If a carer walked between the fan and Anne, Anne would immediately panic and struggle because suddenly she couldn't feel air, she'd feel like she was drowning in her own front room, and suddenly it becomes this place of torture. Those are the kind of memories I struggle to deal with. It's been two years and four months. And indeed I had come to terms

with Anne's death, the fact that I've lost her, I think I'm coping quite well with that. What I'm really struggling with Matilda is I haven't come to terms with the way in which she died. I finally realised I need a bit of help. I've been to the doctor and they've said, well, you've got classic PTSD symptoms. I guess I'm the collateral damage, but I am left with that now. A few days before the end, the night nurse told me, that Anne had asked the nurse to put her out of her misery. That came as a tough blow to know that my wife had asked to be allowed

to slip away peacefully. There's something really kind of absurd about sitting with someone that's going for this struggle and knowing that you could do something about it but that you're not allowed to. Let's take a break. Thank you for listening. Follow MediaStorm wherever you get your podcast

so that you can get access to new episodes as soon as they drop. If you like what you hear, share this episode with someone and leave us a five-star rating and a review. It really helps more people discover the podcast and our aim is to have as many people as possible hear these voices. MediaStorm is an award-winning podcast produced by Helena Wadier and Matilda Mallinson,

with music from Samfire. Episode research is by Camilla Tiana and Katie Grant is our assistant producer. You can follow us on social media at Matilda Mal, at Helena Wadia, and follow the show by at Media StormPod. Listen and hit follow on Spotify.