17 June, 2011

On Terry Pratchett and Escape Routes

This news brought tears to my eyes, because I adore Terry Pratchett and I never ever want the world to be without him:
Three and a half years ago, Terry Pratchett, the beloved author of the Discworld series, announced that he has early-onset Alzheimer's disease. Now he's made an even more startling announcement.

Pratchett, who has campaigned in his native United Kingdom for the right of assisted suicide, has begun the formal process of assisted suicide in Switzerland, one of the few countries in the world to legalize euthanasia. Specifically, this would take place at Dignitas, a clinic that provides qualified doctors and nurses to assist with the patients' suicides. 
Those of us who read Eric MacDonald's beautiful blog know Dignitas.  It's an amazing place, and I'm glad it's there.  Because people need escape routes.

Which one of us wants to live on beyond hope?  Mind gone, life destroyed beyond recovery, each day one more endless slog of suffering and humiliation?  Very few of us, I'd bet.

And because of Switzerland's compassionate laws and clinics like Dignitas, Terry Pratchett doesn't have to.

Does the news he's planning on ending his life shock and sadden me?  Of course it does.  I'll miss him terribly.  He's changed my life in so many ways, given me so many precious memories curled up with a Discworld book.  It hurts to lose him, hurts to know that the series will end far too soon, and that I won't have a chance to ever shake his hand and say a heartfelt "Thank you."  But, people, he has Alzheimer's.  It's already mauled his ability to write, and it will progress to the point where he can't write at all.  It will steal his mind away, leaving a shell, and perhaps just enough awareness to know what's happening.

I am a writer.  I have a damned good imagination, but I can't imagine many things worse.

And how much worse is it when there's no way out, no way to choose the moment, no way to cut out those awful bits at the end and go out on a high note?  To live in fear that one day, you'll wake up and have nearly nothing of you left and know that it will only get worse and yet be forced to live through that nightmare for an unknown length of time?  I can't speak for Terry, but I can speak for myself: that fear would consume me.  It would poison all the good moments left.  Much better to know there's an escape route.  Much easier to live those last good days fully and happily when there's an exit available.  Even if I can't bring myself to walk through that door - and really, until I've got my hand on the handle, how can I know if I'll have the emotional strength to turn it? - knowing it's there would be an enormous comfort.

I've often said we treat our pets better than people.  We don't let them linger on in horrible pain, not if we're good and strong people who can do right by them.  I've made more than one trip to the vet with a beloved pet when there was no hope of any more good days, or too few to justify all the bad ones.  I've held them as they died.  And it's hard.  It's so hard.  But it's the right thing to do.

Why shouldn't I be able to do that for my mother, who lives in dread of suffering and dying like her own mother did, mind gone and only a confused, agonized shell lingering on?  Why shouldn't I be able to choose people to do the same for me?

People have this knee-jerk horror at the idea of someone taking their own life.  They seem to believe no one should have that choice, and they give reasons.  Some, I even agree with.  This isn't a decision that should ever be made lightly: it needs to be understood that it's irreversible, and that some things are worth living through for a bit to see if they get better, because they so often do.  This isn't a decision that should ever be forced on a person.  But there are so many ways to ensure those things are suitably addressed, and they shouldn't stop us from allowing people who want it an escape route.

As for the other reasons, such as it's God's choice and not ours - well, those arguments are invalid.  So are the slippery slope arguments used as camouflage for the religious ones.  We're not going to see grandmas and grandpas bundled off wholesale just because assisted suicide is legal.  There may be isolated incidents.  You know what?  There already are, and always will be, and demanding a perfect system with no errors is just another way of ensuring the escape route stays blocked off for everyone forever.  So fuck that.

I hope, once those papers are signed, Terry Pratchett can breathe a sigh of relief and get on with living a lot more life before the time comes.  I hope we don't lose him so soon.  But at least he's got the escape route open.  No matter when he chooses to go, at least it's his choice, not the disease and not society.  He won't be trapped with no way out.

It's time other people got to have that same choice.

(Eric MacDonald on Pratchett and the Choosing to Die program is well worth reading.)


Anonymous said...

Agreed. I was diagnosed a year ago with CLL, a slow leukemia. Expected survival 7-10 years, no cure just some comfort chemotherapy near the end. The good part is no required diet changes so I don't have to give up Mexican food and beer.

But I have long decided when it gets to the point that I'm just on a steep glide to death, I will choose my exit. I hope to involve my family so it happens with their presence and love, but it will happen.

Two other arguments I've heard that you didn't cover. "there might be a cure" yeah, and I'll be first in line when it leaps from the lab -not. Or "you have so much to learn/teach from the experience of dying". To quote the Grateful Dead, "That path is for your steps alone". We all exit, each In our own time and way. We should get better at dealing with our own mortality, but not by examining the death's of others, we need to examine our death in the context of our life - without hiding behind the comfort of a better worked or better day in death.

Anonymous said...

World not worked damn auto correct

Anonymous said...

A rational reaction to an embuggerance. Well done, pTerry !

Lockwood said...

I think I read somewhere that WA is working toward implementing an OR-style "death with dignity" bill. FSM, how the nay-sayers screamed when that was passed. But several studies and reviews have failed to find any instance of misuse or abuse of our physician-assisted suicide law. I was pleased and proud to vote for it, and the intervening years have only strengthened my conviction that it is a good thing.

Cujo359 said...

I've often said we treat our pets better than people.

The same thought occurred to me every time I had to take a pet to the veterinarian that one last time. We treat them better than we treat each other, at least at the end of our lives.

Karen said...

Anonymous at #1, I wish you as well as Terry Pratchett final days that can be as much of your own choosing as possible. I'm sorry to hear of your illness.

So much to learn/teach from the experience of dying? So fracking what? There's much I can learn/teach about a whole lot of things, but I don't really care. And when the time comes to die, I'd like to do it relatively privately and easily. That's called selfishness.

Karen said...

Oops, that last line was supposed to refer to proper selfishness. The kind that allows you yourself dignity at the end of your life.