I remember watching Sir Terry Pratchett’s documentary ‘Choosing to Die’, and finding it all too familiar. In the film Terry accompanied a man named Peter Smedley to Dignitas in Switzerland where he chose to end his life after being diagnosed with motor neurone disease. At the time, assisted dying was not an issue which had been widely covered, but after its broadcast Dignitas and the assisted dying debate were now firmly sealed in the public’s consciousness. An overwhelming majority of the public now support assisted dying, and it is a legacy that Terry’s family, friends and fans can be proud of.
But I was already familiar with the Swiss hotels, the life-ending medication and the lonely flight back home. My brother John had also suffered from motor neurone disease and I watched as he experienced a slow decline, eventually unable to even speak or swallow. He had discovered Dignitas and told me that when the time was right he wanted to go there and control his own inevitable death. I remember not wanting to speak, knowing that the tears would come. I was not upset because of what he had asked me, but because he was making me face the reality that he was dying.
But I noticed that a light had returned in his eyes, something which had been slowly fading as this cruel disease took hold. “It’s your life and I will help you” I said to him. I had no idea at the time that assisting someone to die could result in a prison sentence of 14 years. It was horrible for John to think of the repercussions, but my only concern was whether someone would try to stop him from going.
To be given choice and control over your own death can actually give you back life. We spent his last night at home watching Monty Python’s Life of Brian. I remember my brother joking on the flight over to Switzerland, offering me his seat for the return journey. I am happy that John was able to control his death but he should have had the choice in his own country. He communicated to me before we went on the plane - “this is a cruel and unnecessary journey”.
John was one of the very first Britons to go to Dignitas in 2003, and since then over 240 people have made the same journey from the UK. This is why the public debate that Terry started was so important. People are still suffering, and Terry was not the type of person to accept a cruel and incoherent law or be forced into drastic decisions.
Terry Pratchett: A career in quotes
Terry Pratchett: A career in quotes
1/13 “Inside every sane person there’s a madman struggling to get out” –The Light Fantastic
Pratchett photographed in 1990
2/13 "We Pratchetts are a feisty bunch"
Pratchett with his daughter Rhianna at home in 2009. Rhianna is now a writer in her own right and has written the storylines to video games such as Tomb Raider and Overlord
3/13 "It occurred to me that at one point it was like I had two diseases - one was Alzheimer's, and the other was knowing I had Alzheimer's"
Terry Pratchett delivers a petition on behalf of the Alzheimer's Research Trust calling for an increase in government funding for dementia research in 2008
4/13 "Imagination, not intelligence, made us human"
Terry Pratchett with his double-row of six computer screens in 2009
5/13 “If you don’t turn your life into a story, you just become a part of someone else’s story”
Pratchett was awarded an OBE in 1998
6/13 “Sometimes glass glitters more than diamonds because it has more to prove” - The Truth
Terry Pratchett launches his 25th novel of the 'Discworld' series, 'The Truth' in 2000
7/13 “Time is a drug. Too much of it kills you”
In 2007, the year he announced he had Alzeihmer's
8/13 "You can't ask a fantasy writer not to want a knighthood"
Receiving his knighthood in 2009
AFP PHOTO/Ian Nicholson/POOL
9/13 "Life doesn't happen in chapters - at least, not regular ones"
Pratchett at home in 2009
10/13 “The trouble with having an open mind, of course, is that people will insist on coming along and trying to put things in it”
Pratchett at the world congress of the World Federation of the Right-to-Die Societies in Zurich, 2012
11/13 “Inside every sane person there’s a madman struggling to get out”
Attends the South Bank Sky Arts Awards in 2012
12/13 "Insanity is Catching"
Pratchett won the Bollinger Everyman Wodehouse Prize at the Telegraph Hay Festival, pictured with Snuff the pig in 2013
13/13 “People don't alter history any more than birds alter the sky, they just make brief patterns in it” - Mort
Campaigning for Dementia Friends in 2014
I am glad to hear that Terry died peacefully. I do not know if he was listening to Thomas Tallis, as he had so often described as his favoured way to go. However the reality is that without an assisted dying law there is no peace of mind for people when approaching their own death. There is no choice, there is no control and there is no compassion.
I campaigned alongside Terry as a fellow Patron of Dignity in Dying, and he wrote the forward to my book, Assisted Dying. He generously helped fund the Commission on Assisted Dying run by independent think tank Demos, this led to Lord Falconer’s Assisted Dying Bill which is currently in the House of Lords. My brother John, Peter Smedley and now sadly Terry may have died, but we must keep on fighting to give people choice at the end of life.
We have lost one of our most vocal and brilliant supporters but with the overwhelming majority of the public in support of a change in the law, it is surely only a matter of time before Terry’s wish - to be “as good at dying as we are at living” - is realised.Reuse content