‘The End of Life Bill Debate Is Excluding the Voices of the Very People It Is Supposed to Help’

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 for terminally ill 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 designed.

They are out there, and they are not voiceless. So we can only conclude it is because the British are terrified of looking at death. But some have no choice but to stare death in the eyes, and to refuse to hear them is to abandon them to face it alone.

This column is dedicated to the dying, dead, and their loved ones, who spoke to me on Media Storm podcast and forever changed my view on assisted dying. Theirs are the testimonies we must not look away from, and that anyone refusing legal reform must answer to.

Kit is 38, and always will be. She is obsessed with animals and happiest in the middle of a salt marsh by the coast. When we speak, she has stage four breast cancer, and is spending her days fighting for a future she will not live to see.

“I dream of a future where assisted dying is an option for people like me,” she said, “that we get the option to die how we want”.

Helping a person to end their own life in the UK is a criminal offence with a penalty of up to 14 years jail. It is legal in 11 US states, Canada, most of Australia, New Zealand, Spain, Austria, Ecuador, Belgium, the Netherlands, Luxembourg, and Germany, with more countries in the process of legalisation. The UK’s stance confuses Kit.

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’d give that dog a cuddle and let the vet give it an injection. 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

Kit, who has stage four breast cancer

She tells me she has lost her voice screaming from pain in hospital wards, and it is not how she wants to die. She wants to die in her husband’s arms.

Written here, these words outlive Kit, just like the cause she fought for. She died a few months after we spoke. I will spare you the details, it was not the death she asked for.

Opponents to reform focus on the sanctity of life, risks of abuse and the slippery slope of legalisation, but a scary phenomenon is happening in its absence. There is a suicide endemic among terminally ill people in the UK, with an estimated 650 taking their own lives each year through unsafe and often violent means.

I am about to do something reporters should almost never do and include details of a method of suicide (suicide being a tricky term in this context). This is not done lightly, but because it is vital to understand what many people suffering with terminal illness resort to in lieu of medically-assisted alternatives.

Norman Ward lived through 15 years of prostate cancer, withstanding hormone therapy, experimental drug trials and multiple organ removals. “It just got too much in the end,” said his son, Gareth.

One day while working from home, Gareth picked up the phone to his father. Norman had been clear from the start he did not intend to endure the worst that prostate cancer had to offer, so when he said, “I’ve got a shotgun, I’m going to shoot myself,” Gareth rapidly called the police and gave them his father’s address. But, as he recalled through tears, his sister beat them there.

“If assisted dying was a thing, [my father] wouldn’t have had to sit in the back garden and blow his face off. My sister wouldn’t have had to have seen it.”

Already, the suicide rate among terminally ill people is estimated to be twice as high as that of the average population, but there are probably 10 times as many failed attempts. Among them was Anne Norfolk’s husband, Patrick, who had the degenerative illness motor neurone disease.

It tortured him. Every day he was on the internet trying to find ways to take your own life. Because it’s illegal, he couldn’t turn to anybody to help. The doctors won’t speak to you

Anne, speaking about her husband’s illness

By the time Patrick left home to end his life, he found he had lost the physical strength to manage. So, he turned to his last resort.

Every nine days, a person travels from the UK to Dignitas, a non-profit organisation in Switzerland where physicians assist severely or terminally ill people to bring about their deaths. The trip costs patients an average of £15,000, but the legal price can be much higher.

Anne went with Patrick to Switzerland to spend his last days with him. She returned to a police interrogation. This is not uncommon for Brits who accompany loved ones to Dignitas, and can face over a decade in prison under UK law for doing so.

In Anne’s case, “the police did decide it was not in the public interest to prosecute me, but if they’d have hiked me off and decided to, I know that we didn’t want him to suffer any longer.”

Opponents to assisted dying emphasise that an alternative is available. Palliative care is a vital and underfunded aspect of our care sector and it gives countless people their best version of death.

But when Warwick Jackson hears MPs arguing against reform on the basis that palliative care is the only solution needed, he is “outraged” – because the best possible palliative care did not help his wife, and false promises that it would meant it was too late to go to Switzerland when the true horrors of her death finally became apparent.

His was one of the hardest interviews I have ever done.

Ann, Warwick’s wife, died of peritoneal cancer in 2020. This was a cancer that pressed against her lungs, slowly, steadily suffocating her. Warwick likens it to waterboarding, a form of torture, that went on for four days and nights.

It all happened at home, and for the first year following her death, Warwick could not enter their lounge “without hearing her struggling for breath, hearing her call out ‘Oh God, just take me’”.

“Palliative care comes in two flavours,” he explained, “pain control and sedation. But when you’re getting short of air, no amount of pain control will fix that”.

“A little waif” on a sedative dose her nurse said should knock out a fully grown man, “Ann was lucid throughout almost her entire ordeal.” She begged her nurse to “put her out of her misery”.

There’s something really absurd about sitting with someone that’s going through this struggle and knowing that you could do something about it, but you’re not allowed to

Warwick on his wife Anne’s death

He continued: “It’s been two years and four months, and indeed I have come to terms with the fact that I have lost her,” he added. “What I’m really struggling with, Mathilda, is the way in which she died.”

Warwick has been diagnosed with PTSD. To this, he says: “I guess I’m the collateral damage”.

The Terminally Ill Adults (End of Life) Bill will have its second reading in parliament before the month is over. Before then, we hope the mainstream media brings the British public the voices of the people the bill is designed for. In the meantime, you know where to find them.

Media Storm’s episode, ‘Death: Terminal illness and the right to die’ is available wherever you get your podcasts.