If you've read the Discworld novels by popular fantasy writer Terry Pratchett, you've surely encountered Death. He's an actual character — a skeleton in a black hood who's portrayed as not such a bad guy after all.
So maybe it's not so surprising that at 63, Pratchett — who has been diagnosed with early-onset Alzheimer's — speaks openly about causing his own death.
"I believe everyone should have a good death," he tells NPR's Steve Inskeep. "You know, with your grandchildren around you, a bit of sobbing. Because after all, tears are appropriate on a death bed. And you say goodbye to your loved ones, making certain that one of them has been left behind to look after the shop."
Pratchett has become an advocate for legalized assisted suicide in Britain, making him one of many voices in a global debate. Many oppose the practice for religious reasons or because they fear a slippery slope to involuntary euthanasia; but Pratchett has turned the legalization of assisted suicide into something of a personal crusade.
"I prefer not to use the word 'suicide' because suicide is an irrational thing whereas I think that for some people asking for an assisted death is a very rational thing," he says. "People who I have met who have opted for it are very rational in their thinking. And indeed so are their families, quite often, because they know they are in the grip of a terrible disease for which there is no cure and they do not want to spend any more time than necessary in the jaws of the beast."
Pratchett says that's why he's considering assisted death — even though his diagnosis could make it hard to recognize the right time to go.
"[It's] always a problem for someone with Alzheimer's," he says. "Regrettably, quite a few people go earlier than they might need to, to make certain that they are totally coherent when they are asked various questions and fill in the various forms that they have to fill in."
'Choosing To Die'
Pratchett has become well acquainted with the process of assisted death. For the controversial BBC documentary Choosing to Die, he traveled to the Dignitas Clinic in Switzerland to witness the assisted death of a fellow Englishman.
"For several days beforehand, the person had to be in Switzerland and talk to doctors where they explained to him what is going to happen," Pratchett explains. "If he agrees to all this and still has a firm purpose, then the last act is in the little room — quite a pleasant little room, I have to say, if you don't know what it's used for — where he takes two potions. One is a potion to stop you chucking up the second one, and the other one is the poison that will kill you in a matter of a few seconds."
All the while, a camera overhead watches to be sure the helper isn't forcing anything on the patient.
"And indeed this gentleman, being a very English gentleman, thanks everybody who was there for coming. And he drunk of the drink," Pratchett says, "and very shortly after he died."
Still A Lot Of Work To Do
The clinic Pratchett visited for the documentary doesn't only serve those suffering from terminal illness. It also serves clients who are simply described as being weary of life, a practice Pratchett is opposed to.
He says he believes it's acceptable to have an assisted death if you're suffering from a terminal disease, but not if you're depressed.
"I've often felt depressed, everyone feels depressed," he says.
As for his own life, Pratchett says he hasn't yet made a decision as to whether he wants an assisted death. He would, however, like for assisted death to be available in the U.K., which means he has a lot of work to do. "I'm gonna fight for that one, and I can't fight for that one if I'm dead," he says.
He also has his life's work to tend to. Pratchett says the Alzheimer's has affected his ability to read and write, but it hasn't kept him from publishing. His new book, Snuff, is due out in the U.S. in October and, with the help of a computer dictation program, he's already working on his next two books.
With all those plans, the author says he's putting off the question of when or if he will end his life.
"As far as I'm concerned, I'm a writer who's writing books and therefore I don't want to die. You'd miss the end of the book wouldn't you?" he says. "You can't die with an unfinished book."
On Death, the character
"He's not automatically anti-people. Death ... does not kill you. It is the gun that kills you; it is the knife that kills you; it's disease that kills you; it is the fall that kills you. Death then comes to clean up and if necessary point you in the right direction. And in my book sometimes he has a little chat, you know, to get you sort of acclimatized to the new position ... He doesn't go out of his way; he's got a job to do. You're down on the list, you know. You are lying there with the burning car on top of you and with one little flip, now he's just telling you go through the door out there, best of luck."
On the source of his black humor
"Possibly my humor has got blacker over the years but it's more because I got older over the years. Because then you view life, people, governments, all sorts of things, in a different way. I don't think my disease has had much of a decision as far as my writing's concerned. My age has.
" ... Just last night, all over London places are aflame and some guy — some photographer — got a lovely picture of a rioter and he's standing there full of indignation with a stolen tape deck in either hand and he's irate. He says, 'I'm doing this because they call us criminals.' And so when people come out with that in real life, I hardly ever have to write."
On his personal experiences with death
"I was unable to witness the death of my mother. When she started to die they left it too late before ringing me. And I was at the death of my father and it was not a good death — it wasn't that bad but they just kept him under morphine for weeks and weeks and frankly they could have been more frank with us, and frank with him. And what was the point? It wore my mother out, I think."
On his family's reaction to his considering assisted death
"My wife and my daughter understand the situation and like me are waiting to see how things go."
STEVE INSKEEP, host:
If you read novels by the popular fantasy writer Terry Pratchett, you encounter death. He's an actual character, the skeleton in the black hood, portrayed as not such a bad guy. So maybe it's not surprising that at age 63, Terry Pratchett speaks publicly of causing his own death. He's been diagnosed with early-onset Alzheimer's.
Mr. TERRY PRATCHETT (Author): I believe everyone should have a good death, not a death reaming. The ideal death, I think, is what was the ideal Victorian death, you know, with your grandchildren around you, a bit of sobbing. And you say goodbye to your loved ones, making certain that one of them has been left behind to look after the shop.
INSKEEP: Terry Pratchett has become an advocate for legalized, assisted suicide in Britain. He is one of many voices in a debate that has spread to many countries. Many people oppose the practice for religious reasons or because they fear a slippery slope to involuntary euthanasia. We should warn you that over the next six minutes we'll hear Terry Pratchett talk of this dark subject the way that he writes, with gallows humor and the occasional profanity. He thinks of death, even though he is soon to publish a new book called "Snuff" and he's dictating two more books into a computer.
Mr. PRATCHETT: It's a speech-to-text module that you can put on your PC, and you talk to it. And it's saved my sanity, I think. It does mean, though, that I have to teach it new words, because it's an American product. So in its original state it doesn't have some, like asshole for example.
INSKEEP: It doesn't have that? Well, we do have that word in the United States.
Mr. PRATCHETT: And I'm fully aware.
INSKEEP: Maybe we pronounce it differently here, and that's causing the problem.
Mr. PRATCHETT: But the whole thing is very clever. You can actually let it it's fairly simple to get it to read your voice.
INSKEEP: I just want to underline this for people. You're saying that because of your condition, you would have difficulty using a keyboard, even difficulty reading, and yet you are still, through dictation, writing.
Mr. PRATCHETT: Absolutely, yes. The difficulty with reading is nothing to do with the eyes, really. It's because the mechanism which allows you to, as it were, read through the page turn and still find your place doesn't work for me. It's a bit of a bugger, but in these you know, it's not that much.
INSKEEP: I think some people listening to you, and those of us who know someone with Alzheimer's will be inspired, in a way, to hear that even though you have this difficulty, you're continuing on with your life's work and finding ways to adapt to your condition and move forward. And so perhaps it will, at the same time, surprise some people that you have become an advocate for assisted suicide and have spoken of suicide yourself. Why is that?
Mr. PRATCHETT: Yes. I prefer not to use the word suicide, because suicide is an irrational thing, whereas I think that for some people, asking for an assisted death is a very rational thing. People who I have met who have opted for it are very rational in their thinking. And indeed, so are their families, quite often, because they know they are in the grip of a terrible disease for which there is no cure and they do not want to spend any more time than necessary in the jaws of the beast.
INSKEEP: Is that your reasoning now?
Mr. PRATCHETT: Formally speaking, yes.
INSKEEP: How would you know when the right time is if it's up to you?
Mr. PRATCHETT: Always a problem for someone with Alzheimer's. And regrettably, quite a few people go earlier than they might need to, to make certain that they are totally coherent when they are asked various questions and fill in the various forms that they have to fill in.
INSKEEP: Well, let's explain, for those who do not know, that you did a documentary at a clinic in Switzerland that assists people with suicide, a clinic called Dignitas.
Mr. PRATCHETT: That's right.
INSKEEP: And you did watch the death of a man.
Mr. PRATCHETT: I was an observer, yes.
INSKEEP: How did they go about the death?
Mr. PRATCHETT: Well, there's for several days beforehand, the person had to be in Switzerland and talk to doctors where they explained to him what is going to happen. Then if he agrees to all this and still has a firm purpose, then the last act is in the little room quite a pleasant little room, I have to say, if you don't know what it's used for where he takes two potions. One is a potion to stop you chucking up the second one, and the other one is the poison that will kill you in a matter of a few seconds.
INSKEEP: So you drink it like someone might drink hemlock in ancient Greece.
Mr. PRATCHETT: Yes indeed, indeed. And all the while the camera overhead is watching to make certain the helper does not force it on you. And indeed, this gentleman, being a very English gentleman, thanks everybody who was there for coming and he drunk of the drink, and very shortly after, he died.
INSKEEP: Doesn't this clinic also service a fair percentage of people who don't have any particular disease, they're simply described as weary of life?
Mr. PRATCHETT: Exactly so. Im not standing up for them.
INSKEEP: Now this is interesting, because one of the great questions of a debate like this, is where exactly do you draw the line. And it sounds like you would draw the line farther than those who are completely opposed to assisted suicide, but you would draw a line. You're no fan of killing yourself because you're feeling depressed, for example.
Mr. PRATCHETT: Well, I would say to that, the reason I would not hold up the banner for that, is that I've often felt depressed. Everyone feels depressed.
INSKEEP: So in your mind, it would be acceptable to be assisted in that process if you have a terminal disease and you'd not wish to endure it to the very end. That is in your mind is where you're at.
Mr. PRATCHETT: Exactly, yes.
INSKEEP: Have you made a decision for yourself?
Mr. PRATCHETT: No, I would like to see assisted dying with a few changes, which are, shall we say, suitable for the way the English do things, available in the U.K. And I'm going to fight for that one, and I can't fight for that one if I'm dead.
INSKEEP: Oh, meaning you still have work to do on assisted suicide, so it's not time to...
Mr. PRATCHETT: Well, I've got a lot of other work to do. As you pointed out very early on, you would speak to me thinking that I didn't have Alzheimer's. I have a rare form of Alzheimer's, which shall you say, gives you a longer view before it really takes hold at its worst.
INSKEEP: So you are an advocate of this, but you have not decided definitely to do it yourself when the time comes?
Mr. PRATCHETT: At the moment I get about, I write books, and the new one, "Snuff" is coming out, and people who've read it so far like it an awful lot. And that was written by me with no other help, other than the occasional secretarial help. So as far as I'm concerned, I'm a writer who's writing books, and therefore I don't want to die. You'd miss the end of the book, wouldn't you?
(Soundbite of laughter)
INSKEEP: We certainly would.
Mr. PRATCHETT: You can't die with an unfinished book.
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INSKEEP: Terry Pratchett has completed many books, including his latest, "Snuff." We have an excerpt at npr.org along with other NPR reporting on assisted suicide.
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INSKEEP: It's NPR News. Transcript provided by NPR, Copyright NPR.