An assisted dying law will complicate life

Unlike Diana Rigg, my mother had no interest in death — a right to die could have made her last years worse for all of us –

By Hugo Rifkind in THE TIMES, 12 December 2022

My mother, Edith, passed away in 2019, after living with multiple sclerosis for a little over 20 years. Her disease was progressive and it was grinding, and she nearly died many, many times. The closest she came, long before the end itself, was probably when her debilitated lungs contracted pneumonia while on holiday in Spain.

I remember sitting in that Spanish hospital, side by side with my father, watching her chest judder. Machines beeped, the air smelled of bleach, and she had a mask over her mouth like a fighter pilot. She’d been like that for days. You wondered, really, if she was still with us at all. And I remember my father reaching out and squeezing my hand. “At least,” he whispered, “she’s not suffering.” Whereupon my mother all but sat up in bed and spat words which, while muffled, were definitely the sort of thing you can’t write in a newspaper.

I told this story at her funeral. She’d have liked it, because she was the bravest person I will ever know. She also had zero interest in dying. Literally, she did not see the appeal. And I have wondered often how different those long, last years of her life would have been had there been an expectation, or even a presumption, that she should have done.

This paper reported on recordings made by Dame Diana Rigg, another fearsomely brave woman, posthumously released by her daughter, Rachael Stirling. Before I get to that, though, I want to say something about how arguments, generally, are usually perceived to work. Because often, I think, we assume that if one side makes an argument and the other side can’t defeat it then the first side has won. Whereas actually, there can be unanswerable arguments all over the place. Not everything has a right and a wrong.

Rigg, who died in 2020, made such an unanswerable argument. She was 82, and she had cancer, and she was suffering greatly. “They don’t talk about how awful, how truly awful the details of this condition are,” she said, “and the ignominy that is attached to it.” Had she been able to end her life without causing legal risk to those who helped her, it seems she would have done. “I think it is unfair,” she said, “that I don’t have a choice.”

I can’t argue with that. All I can say is that my mother did not yearn for one. I remember her once asking me if she was dying, before they put her into an induced coma. She was a scientist; she knew what was going on. The honest answer was, “probably”, and I didn’t want my last words to her to be a lie. I was also pretty sure, though, that there was not the smallest part of her that hoped for it all to be over. I don’t remember what I said, only that I fumbled it. And then, two weeks later, my phone rang and ridiculously, miraculously, it was her. And she would live for another five years.

They were not always good years. She met grandchildren she would not otherwise have known, and the image of her beaming at them while they trashed her living room is one I treasure, but any family with experience of progressive, terminal illness will know just how much that sort of rosy summary leaves out. Still, I cannot help but think that her last years would have been made far worse, and not just for her, by the constant expectation that she, herself, ought to be deciding proactively how much more of this increasing nightmare everyone else should bear.

One person wanting to keep living is obviously not an argument that nobody else should be able to choose differently. In fact, the opposite. Rigg was right; the denial of choice is unjustifiable. Only a month before my mother died, Richard Selley, a brilliant and inspirational teacher who taught me in my teens, travelled to the Dignitas centre in Switzerland to end his own life. He had motor neurone disease and he spent his last days campaigning for the Scottish parliament to support an assisted dying bill. I don’t think he was wrong, either. This, though, is what I meant about unanswerable arguments. Because unanswerable or not, they don’t negate arguments on the other side.

Usually, there are two arguments made against assisted dying. One is religious, and it doesn’t move me. The other is about coercion; bullying families into dispensing with the vulnerable. That one is horrifying, but too crass. A far more worrying prospect, I’d say, is that legalising assisted dying would simply change the nature of the end of life altogether. For advocates, indeed, that’s the idea.

What, though, are the wider ramifications of that? What would it change about the standards of care that the dying would, or could, expect? What would it change about the experience, or even the implied morality, of being terminally ill and cared for by others, and not wanting to die at all? For all the pain, guilt and anxiety it relieved, how much more would it create? These thoughts haunt me.

“Nobody speaks about this,” said Rigg, but that’s true in both directions. I would never have written this column while my mother was alive, because it travels into thoughts that few families can bear. Frankly, I might even be wrong, because we never did have the “Hey, Mum, do you want to die?” conversation. Towards the very end, much as I doubt it, she might have surprised me. As such, I’m sorry if this column only muddies the waters. Given a vote, if there ever were such a thing, I honestly don’t know which way I would go.

But don’t kid yourself that any of this is simple. It is horribly hard to die well. In seeking to fix that, we must be terribly careful not to make it harder to keep living well too.