Interview by Terry Payne (Full Text)
- Terry Pratchett lives in exactly the sort of place you might expect him to live. To reach the very English writer of fantasy books, you drive through cathedrals of arching trees so verdant and shot through with spring sunshine, they dazzle your eyes.
- Into the Wiltshire valley, down a drive that seems to lead you only to a modest outbuilding - his actual home, an ancient manor house, does not immediately reveal itself - through a meadow of thigh-high daisies, along a wiggling path, past an observatory, until you reach the chapel where the author writes. Inside, it resembles a magician's lair, but with computers, a tall stand turreted with his trademark black fedoras, shelves of dusty books, a skull or two, great slabs of amethyst and turquoise minerals - like something out of a natural history museum - and a rusty nutcracker (found in the garden) with gargoyle-heads as pincers.
- We are here to talk about the controversial documentary, Terry Pratchett: Choosing to Die, which is on one level Pratchett's own journey, a forecast of what he may choose to come, as he talks to three British men suffering degenerative illness about the ways they have chosen to end their lives.
The main part of the documentary focuses on a couple, Peter in his early 70s and his wife Christine. Peter has motor neurone disease, a condition that will eventually lead to him being unable to swallow or breathe. He has chosen to die at Dignitas - the not-for-profit organisation in Switzerland - with his wife by his side and to have his dying moments filmed by the documentary team.
- This is not the first time that someone has allowed their death to be filmed for television. Three years ago Sky showed the death of another motor neurone sufferer, Craig Ewert, at Dignitas. But there's something about the combination of the BBC yoked to such a well-loved British figure - particularly one who has been so outspoken about the need to have a national debate about this most emotive and pressing subject - that has prompted accusations that our public broadcaster is becoming a "cheerleader for assisted suicide".
- "In 2008, when he was 60, Pratchett was diagnosed with a rare form of early onset Alzheimer's disease, posterior cortical atrophy, which he refers to - with characteristic humour - as his "embuggerance". It seems to affect his visual sense most particularly, making it difficult to write, type and even get dressed. Ultimately, all Alzheimer's sufferers end up in the same place - with the person utterly dependent on being cared for, no longer recognisable to themselves or those who love them. Pratchett has enjoyed a good life and he sees no reason why he should be deprived of having a good death.
- "Whenever I try to steer him towards his own choices, however, the writer diverts me back to the documentary, particularly to Peter's story. "I think I recognised something in Peter… my wife [Lyn] and I are ten years behind them, as it were, both couples have been married for 40 years and we both have children of approximately the same age… I know something about being married to the same person for 40 years - which helped me think about what was happening:'
- I wonder if he found himself over-empathising, if such a thing is possible, and he says, "Well, it's the journalist thing that comes to the fore [his first job was reporting for a local newspaper] - but also a writer thing - I call it the black mill. You're always standing outside yourself taking notes."
- Are you undertaking this journey, I ask, to prepare yourself for an eventuality that will arrive sooner than it would in normal circumstances? "Thank you for reminding me… I hadn't actually known that;" he says, slightly tartly. "When you've had a long marriage, there are three brains - there are the separate brains and then the brain of the marriage. I can't imagine any wife being pleased in this situation, but it seemed to me, by the time we met them, Peter and his wife had come to a conclusion together.
- "They are what you might call Middle English types and I liked them. Peter used to fly aeroplanes in Africa and they turned a run-down stately home into an award-winning hotel in its first year. They are of a class and type that gets on with things and deals with difficulties with a quiet determination."
- The documentary begins with Sir Terry meeting the couple in their living room in England and ends with Peter's death in the Dignitas cottage in Switzerland. Between these defining moments, Peter speaks to a doctor who explains what will happen and asks various questions "to make sure he is ‘firm of purpose'", says Pratchett. "Dignitas doesn't come rushing up with a knife and say, 'Woah - let's get on with it, then'. They come almost close to dissuading people.
- "And when Erika [a Dignitas worker] puts what Peter laughingly called ‘the hemlock' in front of him, she says to him, ‘If you drink this, you will die. [Charlie Russell, the director, who comes in and out of the interview, explains that the drug is a chemical combination that slows you down and puts you to sleep2.] The attitude at Dignitas is that if at the very last minute, you have a change of heart - that's fine."
- Pratchett wants to paint the scene for me: "It was all so Bergman-esque… the snow was falling but you could see the fields through the snow and Erika's husband Borst (Russell corrects him: "Horst"), who had driven down to the nice little cottage, was marking time waiting for her. There was a verandah outside the room we were in, and Borst had a sort of Swiss curly pipe, and he was puffing away, and the smoke was rising through the snow, and that's what I mean by Bergman-esque…" Russell shouts from beyond the door: "You might just add that it was on an industrial estate!" Sir Terry: "Do not listen to the man behind the curtain. This was a nice little cottage. It is on an industrial estate and it wasn't the dream place to die, but to be honest I can think of many, many worse."
- The two men recall the final moments of Peter's life. Pratchett: "I can say with absolute certainty [since his memory sometimes plays tricks with him, these days] that I shook hands with Peter and he said to me, ‘Have a good life' and he added, ‘I know I have."
- "And that's what's picked up in the documentary," adds Russell. "Erika says, 'Are you ready to drink this?' and Peter says, ‘Yes, and suddenly turns around and says, "I'd like to thank you all."
- "And here's the bit that blows your mind - he can't remember the name of the sound man," continues Pratchett. "And that's what puts your mind in a spin. Here is a courteous man thanking the people who have come with him to be there and he's now embarrassed, at the point of death, because he can't remember the sound-man's name.
- "This is so English - and that's why I was in tears because I think when I was cuddled by Erika, didn't I say, ‘It makes you glad to be …’ ah sorry," he stops, "I'm having a flashback because it was so…" Russell takes over: "It was so surreal and so strange and so touching." Was it tough watching it? "The word ‘tough' can't cover it," says Pratchett.
- "It also seemed to me with his wife that there was a certain feeling of keeping up appearances.” For the camera? "Oh, I think by then even the person operating the camera was not aware of it. The machinery, as it were, had disappeared and there was only humanity." He stops to wipe away his tears.
- He wants to give a final detail, one that is not captured in the film. After Peter dies, Erica walks to the window… "and opens it," I jump in. "You know what I'm going to say, don't you?” Pratchett responds.
- I do, since it happened when my mother died in a hospice. I tell him that the nurse had said that this was so that the soul of my mother could escape through the open window. "I would kiss you if I could;' beams Terry, "and, if practicable, have your babies."
- We both agree, even though we are non-believers, that there is nonetheless something very beautiful about this gesture. "Erika said, ‘I have no religion but I believe the soul leaves the body within 36 hours of death. Something in my brain was going, ‘Does not compute - I have no religion but I believe the soul..: - the black mill had just opened up - and I said to myself, ‘I imagine what I have seen here is as old as the pyramids, if not longer' - and that is why I am open-minded."
- He recalls his feelings just after Peter died: "I was spinning not because anything bad had happened but something was saying, ‘A man is dead… that's a bad thing,' but somehow the second part of the clause chimes in with, ‘but he had an incurable disease that was dragging him down, so he's decided of his own free will to leave before he was dragged. So it's not a bad thing. So then is it a good thing? And you are trying to resolve these things. Because it is a good thing, I think, that in those circumstances Peter got what he wanted - a good death."
- It must have been heart-breaking for Peter's wife, I say, and that must have taken your thoughts back to your own wife? "You're getting psychological on me… alt.. Lyn is maintaining an even strain on this, and that's all I'm really going to say." But has making the documentary firmed up his views on where and how he wants to die? "Right - coming to that from a slightly oblique direction - I have no particular interest in ending my life in Switzerland”. You want to die in your own home in this lovely valley? "Actually, I don't want to die at all, to tell you the truth,” he says.
- It is understandable that Pratchett may be comfortable talking about other people's death, and death in general, but does not want to talk about his own. Although it may, at first, seem a little surprising from someone who is urging us to face the inevitable and look at ways of making it as dignified and painless as possible. As he says, when I make the point that people don't like the idea of death: "Well, they're going to have to get used to it."
- But in our interview, he so much wants to focus on life and demonstrate his mastery of the English language - he delights in unusual words, such as "anneal”, when talking about his anger which has been "hammered on the anvil of experience" - before he loses it all. He loves to whistle and sing. On the day that he was diagnosed with Alzheimer's, he was out in the garden singing (he demonstrates, and has a mellifluous steady voice): "Tis pleasant and delightful on a sweet summer's morn/To see the fields and the meadows all covered in corn/And the small birds are singing on every green spray/And the larks they sang melodious at the dawning of the day."
- He talks about how it used to be a sign of a learned man to keep a skull as a memento mori, in order to remind yourself that someday, you will die and therefore you should conduct your life so that the memory people have of you is the one that you would like them to have. "In other words," he grins, “be careful." And have you led that life, do you think? "Yes… I've even failed to commit adultery. Sometimes I feel slightly embarrassed about that, he says, a bit wistfully, "as though I haven't tried somehow. I very much enjoy the company of women.”
- Last year he gave the Richard Dimbleby lecture, on the subject of assisted death, which concluded: "I would like to die peacefully before the disease takes me over. If I knew that I could die, I would live. My life, my death, my choice.” It had to be read out by his old friend, the actor, Tony Robinson, as Pratchett no longer has ability to do it himself.
- One of the difficulties for people with degenerative diseases who wish to opt for assisted death is the timing and expense. To get to Dignitas costs money and the patient has to die earlier than he or she feels is necessary, in order to avoid it being too late to travel. "That's what makes me so angry, because I am absolutely sure that if Peter had not had to go to Dignitas, he would probably still be around now," Pratchett says. "If there was somewhere in England he could have gone to, when it did become too much for him."
- There are three European countries, Belgium, Holland and Switzerland, that allow assisted death. Pratchett favours the method legalised in the US state of Oregon in 1997, where, "if the doctors agree that you are, as it were, a candidate, they give you the magic potion and you can take it away and keep it at home. Preferably, I suppose, not in a bottle marked lemonade," he chortles. "That is possibly close to the ideal.
- "What I like about it is the fact that because someone knows they can die when they want to, they can treasure every day. They can think, ‘The grandchildren are coming over tomorrow' or ‘It's nearly Christmas so I'll leave it till the New Year… it's a bit painful but we can hang in there. So someone is doing an incredibly human thing, something that no animal can ever do - actually controlling, if not forestalling, their own death - and getting some pride out of that, I suspect.
- "But I do not wish to have to prescribe to Britain what it wants. I would like to see in the UK an examination of the methods of assisted dying so that we may consider what is best. You know, what suits the British."
- He talks about a friend of his, Ken, a shepherd, who died last year in the sunshine, with his sheepdog lying next to him, and how everyone in the valley turned out for the funeral: "All the lessons and hymns were rural and there were many references to shepherds and sheep, and I thought, ‘This is why I like the Church of England - it understands England'. It was the perfect ceremony."
- Have you worked out how you want to be celebrated when you die? A long pause: "Not really… someone else is going to have to do that. But I believe the universe has purpose and form and possibly something behind it - and it is an amazingly splendid place. The point is, if there's nothing, there's nothing to worry about - and if there's something, it's bound to be interesting."
- After we have concluded our interview, Pratchett takes me on a tour of the property. Down through snaking paths that lead into secret spaces, like the old watercress gardens, now planted with liquid amber trees. He snaps off a leaf and crushes it in his hand to release its incense-like resin for me to breathe in. Suddenly we emerge into a great expanse of lawn, which rolls down from the manor house to a stream, straddled by a new stone bridge. He says that he has walked up it from both sides but is waiting for a bridge-christening party to cross it. On either side of its arch are carved the words from one of his literary heroes, GK Chesterton - on the left, "In the breaking of the bridges" and on the right, "is the end of the world."
- The next day we speak on the phone; and he talks about the bridge being an all-purpose metaphor - a bridge between people, and between the past and the future. It is also, of course, a metaphor for a bridge between one world and the next. So, long may that bridge not break for Terry Pratchett - but when it does, you trust that he will be in charge of the demolition, and that all the larks will be singing melodious.
- ‘I'm so sorry; Mum'. These were the last words of Andrew Colgan, 42, to his mother Yvonne. Their story is told in the documentary. Does she have any regrets?
- Why did your son want to end his life?
- Andrew was a marine biologist. He loved diving, microlighting, walking and everything about the countryside. He was 31 and in the prime of his life and then he was told he had progressive multiple sclerosis. Andrew had watched me nurse his father, who was severely disabled and helpless after a road accident. So he knew how he could end up and for him there was nothing worse. He went down quite rapidly in the last three years. His life was being taken away. He was in extreme pain; he couldn't eat, couldn't drink and couldn't sleep.
- He attempted to take his life 14 or 15 months before going to Dignitas. He drove up to Scotland and took three months' worth of morphine, but was discovered by a man out walking. He had reached the point where his life was intolerable and he wanted a dignified way out.
- Did you attempt to dissuade Andrew?
I had never heard of Dignitas when he mentioned it, so of course I was very upset. We argued. I cried. I begged him not to do it. But then I realised I was being selfish. As a mother, why would I want to see my son suffer mental and physical torture. I offered to look after him, but he was very forthright in his views. I was so upset, so distressed. He said he was afraid, but that is what he wanted to do. His physical condition was no longer bearable. He didn't want to end up losing all control of his body.
- Describe the last few days of Andrew's life.
We went out to Switzerland with his brothers Brendan and Christopher. We just said that we would try to make it the happiest three days we could. The three boys went out for a final meal together. He was happy that all his suffering was to be over, he would be spared all the terrible things that were going to happen to him. Before he died he said two things. He said, "I am really, really glad that you are with me," and then as he started to go to sleep3 he said, "I am so sorry mum." His oldest brother said, 'Just have happy thoughts, Andrew" and then he died. I held him for a long, long time. I cried over him for more than an hour.
- How did Andrew deal with the knowledge of his impending death?
He was very angry that he had to go to Switzerland to die. Andrew wanted to be at home [near Newcastle-under-Lyme] at home with his friends and the people who loved him. That right was taken away from him. Instead he had to plan and pay for everything himself — the flights, the hotel — so as not to involve any of us. He thought it was his human right to choose where and how he should die and that right was taken away from him. It's not a religious or a political issue. It's a matter of human rights.
- Do you have any regrets?
I don't regret his choice because we knew that it was right for Andrew. He was going downhill so rapidly, he was so afraid. But that is what he wanted. One of the hardest things for me was leaving him there. He had given them his permission to be cremated. Later when I went to register his death I was told that I didn't have to because he had died abroad. That was terribly upsetting. It was as if he hadn't existed.
Annotated printout filed.
Footnote 1: The RT interview. Terry Pratchett: Choosing to Die; Monday 9.00pm BBC2, BBC HD. In a harrowing five-minute sequence, Sir Terry Pratchett witnesses a man taking his own life at a Swiss clinic. The author tells Ginny Dougary how it changed his views about living with Alzheimer's – and why he wants the right to choose a good death.
Text Colour Conventions (see disclaimer)
- Blue: Text by me; © Theo Todman, 2019
- Mauve: Text by correspondent(s) or other author(s); © the author(s)