Dad wanted to die peacefully but strangers told him to burn in hell

‘Burn in hell.’

I still remember the first hate letter we received in 2010, condemning us for supporting my father’s fight for assisted dying.

It was one of dozens that we received – all while he suffered. But Dad actually wasn’t too fussed about the letters.

In fact, he liked knowing he was making an impact – that he was getting a reaction from people. I think we – my mum and my younger sister, Beth – shared this sentiment because we knew that this was an emotive subject matter, and accepted that not everyone was going to support what we were doing.

These letters came after my father, Tony Nicklinson, became the face of the assisted dying movement in the UK. His story is one of incredible resilience in the face of unimaginable suffering. 

In June 2005, while on a business trip to Athens, he suffered a stroke that left him with locked-in syndrome. He was fully conscious but completely paralysed, unable to speak or move, imprisoned in his own body.

Before this tragic event, he was a vibrant, active man who cherished life, loved his family, and enthusiastically embraced every challenge. Dad was a social creature and was at his best when he was surrounded by people.

So his sudden transformation was devastating. We found it hard watching Dad waste away, but our love for him never wavered.

Dad could communicate by eye blinks, so we had a Perspex board with colour-coded letters. By manually tracking his eye movements, we could piece together what he wanted to say.

When we first got this system going, the first thing he asked for was a pint of beer! As time went on, it was used to communicate more practical things, like when he needed the toilet, when he had an itch, or when he wanted to correct my grammar.

The idea of assisted dying first surfaced in our family six months after the stroke. Dad expressed his desire to end his life, as he felt trapped in a state of continuous suffering. 

This was not an easy conversation but seeing Dad’s daily agony, we came to understand his wish and shared his conviction that he deserved the right to choose. 

We didn’t have any religious objections to assisted dying. Instead, we saw it as a matter of personal autonomy and human dignity. 

So around 2010, my mother, my sister, and I – alongside our incredible legal team – embarked on a battle to change the law. We sought to allow Dad to end his life at home, at a time of his choosing, with medical assistance. 

Our family’s fight was not only for Dad, but for anyone facing incurable suffering.

After we had an initial flurry of press coverage at the time, this is when the hate letters started coming in. Many were signed by their authors, filled with vitriol, and claimed that our family was attempting to play God.

The accusations stung deeply. I was angered and bewildered – why would strangers wish such torment upon a family already grappling with immense pain?

It was the idea of euthanasia and that didn’t sit well with religious folk. As a result, there were some quite nasty people on Twitter, who were vocal. That went on for ages, but we simply accepted that would be part of being so public.

Unfortunately, despite the profound suffering Dad endured, our legal challenge was ultimately unsuccessful.

In June 2012, the High Court ruled against us, stating that the issue was one for Parliament to decide. This ruling crushed us, as it meant Dad was condemned to continue his life of suffering without the relief he desperately sought.

Why would strangers wish such torment upon a family already grappling with immense pain?

It was especially heartbreaking for Dad, as he really believed in the legal veracity of the arguments so found it hard to see how the judgement went against us. 

After the court ruling, his health rapidly declined. He developed pneumonia and, ultimately, a collapsed lung. 

But he refused treatment, choosing to let nature take its course. Watching him suffer through those last days, struggling to breathe, was excruciating.

He passed away a few days after we lost the court case in July 2012 at 58 years old, surrounded by his family. This was almost exactly seven years after his stroke. 

This means he endured seven years of suffering.

In the aftermath, our grief was compounded by the sense that justice had not been served. Dad’s death was not the peaceful, dignified end he deserved.

Instead, it was marked by pain and struggle, a stark contrast to what he had fought for. He suffered in ways that you and I could never really comprehend.

I wish more people understood that assisted dying is not about devaluing life, but about respecting individual choice and alleviating suffering. It’s about granting people like my father the dignity to decide their fate, especially when faced with irreversible and unbearable pain. 

The ability to choose death often empowers individuals to continue living, knowing they have control over their destiny. 

Already, I’m scared Dad’s story has been forgotten by Parliament. The most recent bill in the House of Lords is called the ‘Assisted Dying for Terminally Ill Adults Bill’.

This title means the law – and the debate – can only be about terminally ill people. My dad was not terminally ill – he was suffering, and his story is being ignored. 

Mum and I contacted the recent inquiry to ask if we could present our story in front of the panel, but we never received a reply.

Granted, the issue of assisted dying is complex and deeply personal. However, the core principle is simple: autonomy. 

What is right for one person may not be right for another, and everyone deserves the right to make that deeply personal decision for themselves. For my father – and for countless others – this right is essential. 

As we move forward, I hope my father’s story serves as a catalyst for change. 

We need a compassionate, humane approach to assisted dying that respects individual autonomy and offers a dignified end to those enduring unbearable suffering.

Let us remember Tony Nicklinson not just for his suffering, but for his courage and his fight for the right to die with dignity.

Do you have a story you’d like to share? Get in touch by emailing [email protected]. 

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