'It's not about dying, it's about stopping suffering'

How would a change in the UK's assisted dying laws impact the way we grieve? The relatives of Dan Tuckley, who chose to go to Switzerland after receiving a fatal cancer diagnosis share their story...

Thank you to all my subscribers, I appreciate you all so much. It’s so important to me that I share people’s stories in the right way, and I take a lot of time researching topics and speaking to people. If you upgrade to become a paid subscriber I can do more of this, so if you can afford to, please do. If not, sharing my work with others really, really helps. Thank you!

The interview is below a short introduction from me, and, as always please do tell me what you think in the comments below, or you can find me on Instagram.

Photo by Frederic Köberl on Unsplash

We had to tell ourselves: that’s not my mum, that’s the tumour that’s taken over her. When she yelled, when she was cruel, it was the tumour, it wasn’t her.

I was shielded from so much, my dad, my sister, they saw how vicious that tumour could be. As for me, there reached a point where all I saw was a body in a hospice bed, someone so detached from the woman who I had once known, the woman who raised me.

She had once sang in the kitchen, combed the beach for sea-shells, held my sobbing heartbroken head, against her soft cashmere chest… But, in a time period that was both so-very-fast but also so-gut-wrenchingly-slow, the tumour ravaged her.

It wasn’t all bad. There was joy found in each of her hospital beds. The queue of people, all desperate to chat with her, pouring glasses of Vinho Verde, kept chilled in her bedside sink. She would sit up, surrounded by papers, working on her final book, sharp and determined, almost until the end. I always knew she was marvellous, but, as she faced her death, her strength – when it was there – shone so, so brightly.

I think her death was peaceful, but I do not know, as I was not there. I was at home, Sex and The City tapes playing out, snow falling to the ground outside. I’d written in my diary, over and over, I need her to die, I need her suffering to be over, I need this all to end.

We had no control. She had no control. The knowledge that she was going to die, but I did not know when, haunted me. It hovered over every waking moment: she is going to die while I watch television, she is going to die, while I do this shot. She is going to die and… I am not going to be there.

I was right.

I comfort myself now that perhaps this was what she wanted, that she did not want me to witness her going… when I interviewed a hospice nurse, about death, she told me so many of her patients seem to have some scrap of control, that, often, they hold on for someone to visit them, or they hold on, and protect their loved ones from being there. It’s one of the many mysteries of death.

But my memories of my mum, for a long time after her death, were only of her suffering. They were only of the person the tumour moulded itself around, the person the tumour took over. I was damaged by this. I tried oh-so-hard to remember her, as she had been, but when I shut my eyes, I only saw her bloated, unconscious, alien. I hated myself for this. She deserved more, she deserved to be thought of fondly. For a long time, I couldn’t give her that. What would my grief have been like had her death been different? What if she’d been able to choose when, and where, she wanted to die?

In some ways, Dan Tuckley, was given that. In August 2022, he was diagnosed with terminal cancer, and, within weeks, his prognosis got worse. The type of cancer he had was Metastatic Renal Medullary Carcinoma, a rare and aggressive monster that ravages those affected with it devastatingly quickly. He was told he had weeks to live. Dan made the decision to go to Switzerland, a place where he would be released from his physical and emotional anguish, at time that was right, while he was still him.

Except, while he was granted that choice, he wasn’t. Not really. It came at a cost – a monetary and an emotional one. Travelling with incredibly ill people is difficult, even more so, when those travelling with him are fearful of the repercussions. Assisted dying is illegal in the UK, to the point that even those who travel to a country where it is legal (like Switzerland) face the risk of prosecution. Travelling also meant going sooner than he would have liked, without getting the chance to say goodbye to other loved ones.

As his wife, Sarah and sister, Kate, explained to me, over a video call one evening, they strongly believe he should have had the right for his death to have happened on his own terms, at home. They want the law changed in the UK, a position that is currently being debated: from a new bill in Scotland that could see it become the first UK nation to allow assisted suicide, to Keir Starmer saying that there are “grounds for changing the law” on assisted dying (an umbrella term that cover the various different terms surrounding helping someone to end their life.)

This is their story.

Sarah: Dan was larger than life. He loved dressing up, donning a suit, no matter the occasion.

Kate: Even as he began to fall asleep, after self-administering the treatment in the clinic, he added “don’t forget stylish!” as we were all telling us how much we loved him, and how brave and amazing he was! But, while he was, outwardly, this ridiculous, let’s drink and spend lots of money on champagne type person on the inside he was so caring. Our dad died on the 23^rd of December, and he always made a point of calling us on that day, so we could have a chat…

S: The progression of his illness happened so quickly. He’d gone from lifting weights in the gym, to, within five weeks…

K: He was just bones, on the plane over [to Switzerland]. We had to keep watching his chest, we didn’t know if he’d even make the journey. He’d kept saying ‘I want to go out on my feet.’ Our dad died of a brain tumour, and we were all sitting around him, and he was in a state. That was our last memories of him. Dan kept saying, over and over, I don’t want to get to that point. He wanted to go out with a little bit of what made him remaining. And he managed to hold onto himself, he kept his strength of character to the end.

S: Having that choice gave him comfort in those final days. It had been shit news, after shit news… but this was one thing that gave him control back.

K: It's not about dying. It's about stopping suffering. If you know you’ve got a hell of a lot of suffering, lying ahead, then you’ve got that point, that end, that you can live to. Dan did all the planning, because of the legal position, he was worried if any of us were involved in that stuff, we could get into trouble. He was even saying at the airport, “stop looking so depressed, or they’re not going to let us go to Switzerland.”

S: Knowing he had made the decision brings a level of comfort, but there’s a duality to it. He was never a big emotional person, I just wish he’d spoken more emotionally in the end. I wish he’d said: “I don’t want to leave you.” But that just wasn’t who he was.

K: What I grieved over was the absolute unfairness of the disease, and Dan dying, that was my grief. And I was angered by the actions, and the way his last days were, and how, they didn’t have to be that way, if things were different here. The absolute trauma that we went through was insane. That experience, I can’t explain how insane it was. We were giving our passports and 10,000 Swiss francs to a complete stranger, in a place next to a garage. We had to learn all of this medical knowledge, so as to administer his medication.

The grief about him dying was awful. The trauma about the experience was awful. The fact that Dan was able to do that is the only thing that I can hold on to as a positive, in an entirely awful situation. He got what he wanted, and we could help him do that.

S: If we had assisted dying in this country, he would have had time to say goodbye, to those who he didn’t get to see. He didn’t have much time, even in hospital, but [if we hadn’t had to travel] he would have been able to see more people.

K: Assisted dying has always been something I’ve agreed with but I’ve never thought to do anything about it, until it was thrust in my face. Now, all I can think is, it’s insane that we don’t have the laws in this country. My friend lives in Belgium and a woman in her block had fought cancer for years, and she couldn’t do it any more. Her doctor came to her house, and it was peaceful. When my cat died, we went to the vet, and we put the cat out of its misery. Of course we do, that’s a humane thing to do. But your brother can’t eat, or drink, and you’ve just got to leave him like that, suffering?

Why are we trapping people in this sentence of misery, or making them feel like they have to sneak under the radar, when it’s their life? When Dan told us, at no point, did I consider that it was a criminal thing, I just thought “yes, if that’s what you want, we’ll go to Switzerland.” But then it was like, “wait, I’m a teacher, we could be arrested… Am I ever going to be a teacher again?”

S: And the conditions we had to deal with, in an NHS hospital, it made it so much worse. He was discharged from palliative care and sent home to us. Sent home to die, and we had to organise all of his meds, and no one explained what we were to do with them. We had to Google that. I felt like we were just numbers, we were looked right through.

He was on eight, or nine, different meds. There was the morphine in the needle driver, and he could have extra doses if the pain required it but it was one unit of measurement on the box, and the prescriptions was in another unit. So we had to convert. At this point, I was running on fumes, it was 2, 3 in the morning and I hadn’t slept for days. I gave him a tiny bit too much, and it caused his blood pressure to drop. We had to have an ambulance out, but still, no one explained to me the correct way to do it.

K: Sarah is an intelligent person that works in numbers, and she’s struggling! He was so dehydrated, and in agony. It didn’t feel like care. It wasn’t palliative care.  

S: I get that, for some, palliative care is right. But it's not for everybody and there should be a choice, if you want palliative care, then fine, all power to you. But if you want to go at a time of your choosing under your own steam, you should also have that choice.

If I could say to anyone, why I am so pro assisted dying, I’d say: imagine the person that matters most to you in the world, who you love more than your own life… Imagine them just disappearing in front of your eyes. And you just have to watch, you can’t do anything to help them, even though they so want to die. It’s what they want, so why, why wouldn’t you let somebody have that choice?

K: Watching anyone suffer is awful, watching somebody you love suffer is the most unbearable pain. I cannot believe anyone would say they want to watch someone they love suffering. No one wants that. So, if you don't want to watch someone you love suffer, what's the answer? Let them stop their suffering when they're ready.

It also turns back, the other way, I wouldn’t want my children to sit by my hospital bed and watch me suffer. I wouldn’t want that at all. I would like to make that choice. My mum's in a nursing home, they change her nappies and she's fine with that.  I do not want that for myself. I would want to put an end to it before I was in that position.

I’m not petitioning for everyone to have to go this way, just those who want it. I was speaking to another old woman in that nursing room, and I asked her how she found being there. Her son said, no, she calls it “the waiting room” because she just wants to die. She’s 94, she’s basically blind and deaf and she just sits there in misery every night. It’s like: what are we doing? Why are we forcing that woman to be alive when she doesn't want to?

S: Dan wrote a note for all of his friends and family, and in it he said “cancer did not kill me, I killed cancer.”

K: On our last night together, in Switzerland, we stayed in a beautiful hotel in the mountains. Dan had chosen the meal, and all the wine we drank, but he was too ill, he couldn’t eat it. He left early, with Sarah, and their wedding song began to play.

S: The next day, just before driving to the clinic, we sat on a terrace, and chimes rang out from a church. “For whom the bell tolls,” Dan joked. He retained who he was throughout.

Thank you so much to Kate and Sarah for opening up and sharing their story with me. I was connected with the pair via Humanists UK who have long supported attempts to legalise assisted dying. You can read about their campaign here.

I recently researched and wrote about both sides of the assisted dying debate for Women’s Health UK, if you have Readly you can read the article here.