Deborah Binner’s husband, Simon, was 57 when he chose to have an assisted death in Switzerland after 10 months of living with motor neurone disease. She told the BBC’s Victoria Derbyshire that while she respected his decision, his death felt like abandonment.
“There was a sense of people saying, ‘Hasn’t he done a wonderful thing?’ But I had two children who were in bits,” Deborah says.
When Simon travelled to the Eternal Spirit clinic in Switzerland to die, in October 2015, he was accompanied by his wife and a film crew.
The resulting BBC documentary, How to Die: Simon’s Choice, was the only good thing to come out of it, Deborah says.
“He had an altruistic streak so he felt that letting them follow him would benefit lots of people.
“I was inundated with letters and I still am – from people saying it was so helpful and made them feel less alone.”
‘Open the gate’
But the aftermath was more complicated for her and she does not think the law on assisted dying should be changed.
“Simon’s death wasn’t bad – but when you open the gate, what happens next?” she says. “Older lonely people, or people sitting on lots of money, people already feel a burden – it’s something, how we value human life, that really worries me.”
Deborah describes businessman Simon as “a whirlwind of a person – funny and loyal”. “I didn’t want him to leave me,” she says. “He was such a rock. He was always on my side”.
Her daughter Chloe had died aged 18, three years before Simon. She had Ewing’s sarcoma – a type of bone cancer.
“He was diagnosed as he had a funny feeling in his tongue. We lost Chloe a year before so I couldn’t believe this was happening. I thought, ‘Please God, let it be a stroke’. Even though I lost Chloe, I couldn’t imagine my family would get something else.”
Motor neurone disease (MND), also known as amyotrophic lateral sclerosis (ALS), is a progressive and terminal disease that damages the function of nerves and muscles, resulting in severe damage to the brain and spinal cord. It affects up to 5,000 adults in the UK at any one time.
Within a couple of months, Simon could hardly talk. “He was such a fantastic communicator so that was a big deal – a terrible shock,” Deborah says.
Simon tried to take his own life twice before Deborah agreed to go to Switzerland with him.
“Actions speak much louder than words,” she says.
“It was almost backing me into a corner and making me feel there was something worse. He was showing ‘how desperate I am’.
“When I look back on that time – it was one horror after another – I had underestimated how important it was that I went with him.”
Pro-assisted suicide campaign group Dignity in Dying estimates that every eight days someone from the UK travels to Switzerland for help to die.
It is an offence under the Suicide Act 1961 to encourage or assist the suicide or attempted suicide of another person in England and Wales – and can lead to 14 years in prison. Assisted suicide is also unlawful in Scotland and Northern Ireland.
“I didn’t worry about breaking the law personally for me, although we didn’t want the girls to come for that reason,” Deborah says. “I knew we were all working from the best intentions. I do think there should be a law and I respect this law.”
Deborah explains she experienced grief differently when she lost Simon and Chloe.
“Losing a child is different to everything. The pain is fundamental to who you are and you don’t want it to go. Sometimes when I am happy, I feel guilty. The pain reminds you of them, which you like,” she says.
Chloe’s death had been gentle, which Deborah says was the key to her being able to live on.
“How Simon died – it was so different – there was the worry if we were doing the right thing. With Chloe, there was no choice,” she says.
She is now campaigning with oncologists and drug specialists for better access for children and teenagers to drugs, and cutting the age of entry to drug trials from 18 to 12.
“It’s a culture that stems from thalidomide,” she says. “Its intention is trying to put safety into drug development [- but] we need to protect children from lack of research.”
Deborah has also written a book about her experiences.
“One thing that is very close to my heart is the importance of resilience and making choices to live afterwards,” she says.
“I hope people think, ‘Heavens if she can do it, so can I.’ I guess this is the main reason I wrote my book and why I read others at my darkest times. There’s always a choice, however dark the circumstances.”
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