What will Terry do?

Last night I stayed up way past my bedtime (until 11:00pm, that is,) because I was watching a film made by Terry Pratchett on assisted suicide. It is called Choosing to Die, and it documents Sir Terry’s visits to a Swiss facility, run by an organization called “Dignitas,” which provides the space, screening, guidance, and medications involved. Also, he interviews two terminally impaired people choosing that exit strategy, and their loved ones.

Terry Pratchett (in case you’ve never read any Discworld, or Wee Free Men books,) is an English fantasy novelist who is contemplating the Dignitas option himself as a way to escape from the otherwise inevitable endgame of his posterior cortical atrophy.

Although I’ve known of Pratchett and his diagnosis for some time, this film was the first time I’d seen him in action, and I was struck by the amount of insight he seems to retain into realizing the scope of his illness-induced limitations. Sir Terry can no longer type, and he knows it. Instead he relies on his assistant to take dictation. Also, that he is able to conceive of and carry out the making of a documentary, and interview the people involved cogently and without seeming to lose the thread is evidence that Jeff has tumbled a good many steps below Terry, off the staggered cliffs of Alzheimer’s. Jeff could not determine the steps necessary to contact Dignitas. He could not understand why he’d even want to contact them. And these very factors bespeak a cognitive condition which would, in and off itself, disqualify him from the program.

I wonder, in a moot point sort of way, what I would think if Jeff were of sound enough mind to choose the Swiss option (which is, as I understand it, also available in Belgium.) I believe that I would be like the wife of the man in the film who is suffering from a degenerative motor neuron disorder and have to be supportive and cooperative. That said, I admit that we almost have to start with a reflexive reaction that says “What? No way! I’m not getting involved with that!” This is partly because you in no way wish to be complicit in someone’s death. Unless it’s yours, and it’s you choosing. Because there are not too many folks who’ve watched a partner fade into Alzheimer’s and not considered that—were it they—they’d want a way out. Short, sweet, quick. This is why I would have to go along. What if you wanted that option and everyone stood in your way, and told you you couldn’t...that you had no choice but to degenerate into fetal, mindless helplessness?

Lately I’ve been thinking about Jeff, and what he would have wanted. What would he have thought, as a hearty active 45 year old, of his life at 63? The existing Jeff does not meta-analyze. He doesn’t think about the fact that he can’t drive, put his pants on, wield a tool, have a conversation. It is one of the dubious “gifts” of Alzheimer’s that it often protects its sufferers from understanding what kind of condition they’re in. I know what he would have said. He would have wanted out. He would’ve said “no way.” It does me no good to know that. I have to deal with who he is now.

Well, this is why it’s “assisted suicide,” not euthanasia. When we euthanize a sick pet, we are choosing. When a human wants an escape route, he/she must be able to carry out the definitive steps him/herself, up to the final action of swallowing the potion. So, like most Alzheimer spouses, I’ll be on the boat ‘til it runs out of gas.

I wonder what Terry Pratchett will do? He acknowledges that, with AD, it’s tricky. He still enjoys life. He wants to keep writing, even by dictation. He feels that when he can no longer dictate a story, that’ll be the time. But will he still then be competent? Like the younger man in the documentary, who chose to go before his multiple sclerosis rendered him unable to take action, Sir Terry recognizes that he will likely have to decide before he’s really ready, and waiting too long is a choice by default.