Media Storm - S2E12 Death: Terminal illness and the right to die

Episode Date: December 8, 2022

Warning: Discussions around suicide and assisted dying. If you need someone to talk to, call the Samaritans on 116 123.  It happens to everybody but nobody wants to talk about it: the irony is, it's often the not talking about death that makes it such a terrible thing. For our season finale, we bring you a special-length investigation into the real-life consequences of silence and stigma around dying. Doctors are restricted by it, patients isolated and otherised for it, families unable to prepare and grieve properly, and those who want choice about how they die are denied it and even criminalised. Media Storm speaks to families and individuals affected by terminal illness and grief about the choices and conversations they’d like to have more of. The episode is hosted by Mathilda Mallinson (@mathildamall) and Helena Wadia (@helenawadia), with research by Eliza Mellor. The music is by @soundofsamfire. With special thanks to On Road Media.  Guests:  Ellie Ball @wee_ellster Dignity in Dying @dignityindying Dr Finella Craig, Great Ormond Street Hospital @GreatOrmondSt Simon Blake @simonblake Hospice UK's Dying Matters Campaign @hospiceuk @DyingMatters Aongola's Story https://bit.ly/3uDnX4N  Resources: On Road Media's Children's Palliative Care project: https://bit.ly/3FyNdiY Jessie May Children's Hospices at Home: jessiemay.org.uk Together For Short Lives: https://bit.ly/2s8yYuu Simon Blake's blog https://bit.ly/3izLxNa Sisters & Brothers: Stories about the death of a sibling, by Julie Bentley and Simon Blake https://amzn.to/3VCFcPG Sources: Terminal illness and 'suicide' https://bit.ly/3XZpPmd ONS findings https://bit.ly/3PgtmZd Brits assisted dying in Switzerland https://bit.ly/3BgRGEE Palliative care funding https://bit.ly/3iLIDoL Palliative care access https://bit.ly/3W0Qo8w Palliative care and life expectancy https://bit.ly/3FBCZP7 British public opinions https://bit.ly/3iLIUrN YouGov poll https://bit.ly/3uuyboj Get in touch: Follow us on Twitter http://twitter.com/mediastormpod or Instagram https://www.instagram.com/mediastormpod or Tiktok https://www.tiktok.com/@mediastormpod like us on Facebook https://www.facebook.com/MediaStormPod send us an email [e-mail] check out our website https://mediastormpodcast.com Become a member at https://plus.acast.com/s/media-storm. Hosted on Acast. See acast.com/privacy for more information. Learn more about your ad choices. Visit podcastchoices.com/adchoices

What did your ancestors really do all day? Beyond names, what were their lives like? With Ancestry's global historical records, you can discover incredible stories about how your ancestors lived and worked. And for a limited time, you can explore select occupation records for free. Imagine finding your great-grandfather's RCMP records or discovering your ancestors' name in the UK and Ireland Nursing Register. Don't miss out.

Free access ends August 24th. Visit Ancestry.ca for more details. Terms apply. Matilda, let's talk about death. Wow, what a cheery way to end series two of Media Storm. I know, I know. It doesn't seem very natural to say, let's talk about death, even though death is one of the most natural things in the world.

And even though this week is National Grief Awareness Week. Yeah, happy National Grief Awareness Week. Is that the right way to wish someone a National Grief Awareness Week? Do you wish them at a happy National Grief Awareness Week? It's an oxymorum, but I enjoy it. I mean, you say death is one of the most natural things in the world. Maybe it is the most natural thing in the world. It happens to everybody at some point.

And likely, everyone has also experienced it already in some form, even if it is just like a hamster, or maybe if it's a grandparent or a parent, even a child. It's strange that we don't like to talk about it almost at all, which is ironic, because as we found out, it's the not talking about it that makes death. so much worse. Totally. And it's also important to say that it isn't necessarily across the board. I'll give you an example. In my culture, which is parsi culture, I would say death is spoken about a bit more openly. We wear white to funerals to symbolise purity and light rather than black, which comes to symbolise evil. So it's almost more of a celebration. We also have open caskets. So we look at the

dead bodies, not as something of shame. And yeah, you know, in some South Asian cultures, we tend to have bigger families, which just means that more people die. And perhaps we're slightly more used to it. But still, it's fair to say, it's still taboo. Right. And so we have to ask ourselves, why is death so taboo? Is it because we fear death and therefore avoid anything that makes us confront it, however inevitable it is that we will have to ultimately confront it? Is it because we're obsessed with youth and every skincare advert tells us not to age? Is it because the sanctity that religion attaches to human life means anything that threatens it has this morality tag tied to it,

like with abortion or euthanasia or even suicide? We say committing suicide. Or is it just our emotionally repressed culture causing us to lock up our grief and any other mental struggles we're dealing with? Well, I think it's a combination of all those things. But as we've seen, not being open about dying, death and grief can have some real-life consequences. Right.

As we've learnt, even doctors and caregivers can get awkward talking about deaths, meaning patients and families may not be prepared or able to prepare for that death. Patients and families affected by terminal illness get otherised and the rest of us all end up grieving in silence and solitude. Plus, end-of-life care, also known as palliative care, becomes undefunded, as Parliament and the general public are unaware of just how important it can be. Unaware or unwilling to talk about it. And perhaps most shockingly, those who are suffering, say, with a terminal illness

and want a choice over how they die, face incriminating medical staff or family members with a punishment that could include a life sentence. So listeners, given the nature of this topic and that it's the season finale, we wanted to take the pace a little slower. The interviews you're about to hear will make up the whole episode in a lengthier investigation. Helena and I are off to find out more about the rights we have to choose how we die. From end-of-life palliative care to suicide, euthanasia and assisted dying. We'll be speaking to people affected by terminal illness and grief. about the choices and conversations they'd like to have more of.

Then we'll wrap up with some solutions from the Dying Matters campaign to find out how to make this subject a little less taboo and reframe this media storm. One of the most ethically sensitive topics we can possibly discuss. My son deserve to die with dignity. Thou shalt not kill. For some, the moment of your passing is a matter. for the almighty. Why can't we treat death with a certain amount of humanity and dignity and decency

and God forbid, maybe even humor? Welcome to MediaStorm, the news podcast that starts with the people who are normally asked last. I'm Helena Wadia and I'm Matilda Mallinson. This week's investigation, death, terminal illness and the right to die. A warning, this episode contains descriptions of assisted dying 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 the ewe 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 and decided 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 for people like me that we get the option to die how we want Why is that so important to you? 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 poison 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 differences between living and existing. think 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 he 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, she said to me,

if it 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. 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? Yeah, 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 10 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 won'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. But 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 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, 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 he 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 Bull from the charity, dignity and dying. She's here to give us an overview on assisted dying laws in the UK and elsewhere. Right 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. 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, who are 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? 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. Just where are we at within Westminster?

Is there any process in place to actually change the law on assisted suicide? There are no current plans for that. 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 uncompassionate. 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. prove 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 Kembre'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 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 teens 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 are to have things like family days and Christmas parties through Jessie Mae Children's Hospice at Home Service. And that was

great to meet other families who understood 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 appreciate. 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

receive it 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 families 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 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, Fenella says it's essential to reframe how we think about palliative care. People don't realise 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 think 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 where 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.

I'm sorry about this. That's okay. Two years now when you 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 here, Matilda. Warwick, thank you.

you so much for sharing. Obviously, this is still very emotional for you. How much do you feel the fact you witnessed Anne 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 and 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 have 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. One thing before we resume, a podcast we'd love to recommend. The We Society podcast hosted by author and journalist Will Hutton and brought to you by the Academy of Social Sciences. As the institutions and structures that have unconstitutional, Underpinned Britain and the world quiver before unprecedented pressures,

Will explores with a unique range of experts, the roots of what is going on, and how best we can together respond. The topical issues in the second series range from Russia's invasion of Ukraine with Sir Lawrence Friedman to how a stressed NHS can sustain Britain's health with Professor Linda Bald. This is a must listen for all of us trying to get to grips with the magnitude of today's challenges, concerned about our society and looking for insight and hope. You can listen to the Wee Society now wherever you get your podcasts. So, let's talk solutions.

Opinion polls show that the majority of Brits already support reopening the debate on assisted dying. So why is nothing happening in government? And what, if anything, should be done to change that? I worked in the health service a long time. So when I became an MP, I thought, that's the law. I feel I want to change. I asked Karen Smith, Labour MP for Bristol and former minister, for social care. Can you tell me, Karen, when it comes to reforming the law on assisted dying in

the UK, why is progress in Westminster so slow? We had a formal vote in 2015 and the vote was defeated. It's my view that if we did have a vote now, that would be quite different, but the government hasn't given any time to debate the issue. So we actually haven't had the opportunity for a debate. If public opinion seems to be in favour of some sort of reform of the law, can you explain to us why the government hasn't made that time and doesn't seem to be about to make that time either? Well, when political parties go to the country in a general election, they do so on a set of promises called a manifesto, and it wasn't a manifesto commitment by this government. So to bring forward legislation time would be

an unusual step. So I urge people to contact their MPs to say, will you at least, if you don't want to change the law, will you at least give time in Parliament, whichever party they support, try and get that commitment for the next election? Because that's how our democracy works. It does work on the basis of going to the country on a manifesto and then delivering that manifesto. And the reality of how the current law works really needs to be made clear to individual MPs. And I can't stress how strong that is. It's so impactful. Karen, you have been shadow minister for social care.

If, as is quite likely, we see a Labour government come 2024, do you think that reforming this law will become a manifesto priority? Having something in our manifesto that says that we will review the operation of the current law is something that I will certainly be pressing for. So yes, I would like to see us make that commitment. Having this debate may not only be in the interest of supporters of assisted dying, Karen reveals, but also proponents of palliative care. The more you talk about choice about how and when and where people want to die,

the more it raises up the agenda, if you like, the real paucity of financial resources that there are in the NHS and the wider system to support end-of-life care and palliative care. We have relied historically on charities. and churches for lots of our hospice care, for example, some fantastic care. That's not acceptable really. And so where we've had this law introduced, and I know with a clinician from California recently, investment in palliative care has gone up. So lifting the lid of the debate around death and dying, I think always is a good thing. So how do we lift the lid and normalise death? Here's Julie Kembray again. The thing that I do now is I talk about

death all of the time. I think it's healthy to speak about it and to think about it and to try to normalise it, I suppose, because it's something that we're all going to have to deal with. People become very anxious and uncomfortable around the topic. And I think it's because they fear that they're going to say or do the wrong thing. And I would like to, I suppose, reassure people that if you do something, if you smile, if you don't cross the road, but you just say hello, how are you? If someone someone's lost someone dear to them, then ask them, would they like to talk about it? Would they like to go for a cup of coffee? Would they like to just sit in silence and think about or look at some photographs? Be prepared to look at the same photograph over and over again,

if that's all there is. Be prepared to listen to the same memories because all of that is really important. And I think in being alongside someone, then maybe you will learn something about yourself and about how to cope with your own losses in the future. We wanted to find out more about the power of open conversation, so we reached out to Dying Matters, the campaign from Hospice UK, which aims to break the stigma around death and bereavement by challenging preconceptions and normalising public openness around dying. Simon Blake is chair of the campaign. My brother died unexpectedly about seven years ago and my mum then had a terminal illness

and I was really lucky to be able to spend the last three months living with her. It was during COVID and through that process I came to be very familiar with the campaign and when they were looking for a new chair thought, you know, this feels like something where I have the experience or the lived experience, but also professional experience of helping people to talk about things and feeling comfortable having conversations with a wide range of professionals and the public about death and dying. As part of the Dying Matters campaign,

people were invited to share their stories through a series called I Remember. Angola was one of them. I shared the story of my auntie and my grandma who passed away in Zambia Due to COVID, in the peak of the initial rise of the pandemic, within a week of each other, I think it was four days of each other. It was a really painful experience at the time, the distance, how sudden everything was, the pace and the time frame in which I'm tumbling through the experience. And I did almost the stereotypical thing of internalising that.

very few people around me knew the extent of what we had gone through as a family, what I personally dealt with, what my immediate family had to deal with, and I was always a watcher for a long time, keeping eyes on dying matters as past campaigns and the types of conversations that they would spark, and that started to get me thinking about the importance of talking about it. And for me, this was one of the catalytic moments that sparked having that conversation with people.

Angola, what kind of practical things helped you deal with your grief? In kind of our last experience of grief when my uncle suddenly passed away and we were able to organise to get my mum back to Zambia. I remember fixating on making sure that the car that was going to pick her up whether they were able to get petrol for the car. And it became such a magnified thing in my day and it took a cousin just giving me a phone. called to say that, like, we've got that handled. You don't have to spend a day understanding

how to transfer money to a small village and understanding who's hiring what car and who's insured where. And that took that responsibility I had created in my head and allowed me to start to focus on other things. Simon agrees, adding that the benefits of open conversation around dying, grief and bereavement are almost limitless. An example, you know, taking my mum's death. Because we knew she was dying, we were able to talk about it. I gathered a memory book, so she was able to know the impact that she'd had whilst she was alive. But I was also able to talk to her about what she would like, you know, her funeral to be. And she wanted her wedding him, which is so obvious when she says it. But we would never have thought of her wedding him.

So all of those conversations which help you, because in that moment of grieving, you, you, you can get lost in tradition. As we talk about it, as we understand, we learn that there is no one right way, that we learn that there is many ways of preparing for death and for talking about death and for grieving as there are people. But the bit which doesn't help anyone who's dying, or those who are with and around somebody dying

is if we don't acknowledge and name what is happening and we pretend it's not happening or we use words which don't make sense. So for me, that openness is really about enabling us to be truthful about what's happening, to acknowledge what's happening and to find ways to navigate what is happening the best way that we possibly know how. And I guess the other thing which I would just say is if somebody said, do you need me to do anything, in that moment, I'm surviving, I'm doing everything, I need to do everything, I need to be strong. Somebody says, I've just bought you lasagna so that you don't have to cook.

Yeah, thank you. So there's also that bit about us just learning how to lean into scenarios. Instead of saying, can I help you? You're saying, oh, they've got children. I'll just say, I'll pick the children up. Or, you know, it's still the summer. I'll say, I'll do the gardening. whatever it is that you can just see to help

because for some reason we still worry about the house being really clean or the garden not being pruned or whatever when you're dealing with something really emotional. So I think that openness and talking enables us to just do it in the best way which you can, which is to do it together and to do it in solidarity and to help people walk emotionally through and to share intelligence to do it as best we can.

Thanks for listening. That is all from Media Storm Season 2. But hold your horses, don't go anywhere because we have got a couple of bonus episodes lined up to get you through to Christmas. Next week is our final installation of This Is How You Do It, our crossover bonus series with the Guilty Feminist, where we'll be speaking to Mega Mohan, the BBC's first ever, gender and identity correspondent. And in the week leading up to Christmas Day, we've got something festive and upbeat for you. It's the second half of our live show recorded at London Podcast Festival, where we'll be talking to comedians Deborah Francis White and Isabel Farrah about how you can't say anything in comedy anymore. Except you can. Follow Media Storm 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. It's our season finale, but we're already cooking up some exciting plans for series three, so we'll see you in the new year. And in the meantime, get in touch if there's anything you'd like us to cover. Media Storm, an award-winning podcast from the House of the Guilty Feminist is part

of the ACOS creator network. It is produced by Tom Solinsky and Deborah Francis White. The music is by Samfire. Thank you.