Only when the assisted dying bill passes will I stop feeling angry about Terry Pratchett’s final years

Next year, it will be a decade since my friend Terry Pratchett died, aged 66, having suffered for years with posterior cortical atrophy, a rare, young-onset form of Alzheimer’s disease. For much of that time, he was not only stoic about his diagnosis but even found within it a vast reserve of dark humour.

Terry once explained how “there isn’t one kind of dementia, there aren’t a dozen kinds, but hundreds of thousands. I, for one, am the only person suffering from Terry Pratchett’s posterior cortical atrophy – which, for some unknown reason, still leaves me able to write, with the help of my computer and friend, bestselling novels…”

The author of the hugely popular, 41-strong Discworld series of fantasy novels, Terry was also the catalyst for a societal shift in attitudes towards dementia. In addition to that, he spent his final years campaigning for the right to die.

So the Terry I knew would be frustrated with those politicians who are now wavering in their support for a private member’s bill on assisted dying, that would allow adults who are terminally ill, subject to safeguards, to have that choice.

As I do, he would find it unfathomable that some MPs – in the face of public opinion in favour of legislation, as well as so much evidence that the status quo is failing dying people – are not only dragging their feet on this issue but turning their backs on it.

I’m angry that Terry spent so much of the precious time he had left fighting for assisted dying when he could have been doing other things he so enjoyed. Until the fight is won, precious time continues to be lost.

In the moments immediately before he finally shook hands with death, Terry knew exactly what he wanted. He wanted to be sitting in a chair on his lawn, a brandy in his hand and Thomas Tallis playing on his iPod.

Had an assisted death been available to him at a time that he needed it, he certainly wouldn’t have chosen to spend so much of his final years talking about death and dying. He loved life too much and wanted to wring the juice out of every day. He loved writing, but he also loved watching the otters in the River Ebble at the bottom of his garden and gazing at the stars from his little observatory.

I worked with Terry for more than 20 years, first as his assistant and later as his business manager, from December 2000 until his death. I wrote his authorised biography and now, with his daughter Rhianna, oversee his literary estate.

During the “campaigning for assisted dying” period of Terry’s life, which began in his late fifties with his Alzheimer’s diagnosis in 2007, we met some remarkable people for whom the lack of a compassionate assisted dying law robbed them of life. Peter Smedley – who Terry and I followed to Dignitas for our documentary, Choosing to Die, and to whom we bid farewell just moments before his assisted death – quite obviously lost time that he could have otherwise enjoyed.

Peter chose to travel to Switzerland while he physically still could, which was much sooner than if he could have instead pushed a metaphorical assisted dying button in the comfort and privacy of his own home.

As well as those who make the fairly unusual choice to take advantage of the Swiss laws, Terry met lots of people who were worried they might be in for a terrible death, having been traumatised by the end-of-life suffering of someone they loved. Consumed by the thought of what might happen, they lost time to be joyful. What Terry realised was that the campaign for assisted dying is actually about wanting quality and quantity of life.

Having watched the debate play out before the Leadbeater bill is thrashed out in the House of Commons on 29 November, it saddens me that some MPs have been sidestepping an obvious fact – that the current law harms people every day. Instead, those who oppose it cling to dubious claims of how much ending that harm will cost in pounds and pence. It feels like the narrative being portrayed is head versus heart, or life versus death, but I don’t believe that’s the case. And nor, I believe, would Terry.

To back assisted dying is to choose life. Terry’s dying wish was for people to have some choice about when they come face to face with death. That’s why we talked so much about dying instead of watching otters.

MPs have a real opportunity to give the British public the gift of time when they come to vote on this bill. Time free from “what if” when the inevitable is looming. Only when we get that right can we start thinking about who we want playing on our proverbial iPod when we say goodbye, where we want to be listening to it, and what tipple we want in our final glass.

And perhaps then I will stop feeling so angry about what could have been for Terry.

Rob Wilkins is author of ‘Terry Pratchett: A Life With Footnotes’ (Penguin, £10.99)