I recently read a thought provoking article in The Times: What happened when an assisted-suicide campaigner faced the worst decision of her life by Robin Marantz Henig, 17 August 2013. The article is behind a paywall but it may also be found on the Brooke Hopkins & Peggy Battin blog, along with more about their personal experiences in living with severe - accident caused - physical disability.

As background, Margaret Pabst Battin [Peggy] teaches philosophy and writes about end-of-life bioethics. Brooke Hopkins, after an accident in 2008, became a quadriplegic, paralysed from the shoulders down. Article extracts only are given here, please do read the full article by clicking on the link:

Suffering, suicide, euthanasia, a dignified death – these were subjects [Peggy] had thought and written about for years, and now, suddenly, they had turned unbearably personal. Alongside her physically ravaged husband, she would watch lofty ideas be trumped by reality – and would discover just how messy, raw and muddled the end of life can be.

“A person should be accorded the right to live his or her life as they see fit (provided, of course, that this does not significantly harm others), and that includes the very end of their life,” she wrote in one of her nearly 40 articles on this subject. “That’s just the way I see it.”

That’s the way she saw it after Brooke’s accident, too, but with a new spiky awareness of what it means to choose death.

“It is not just about terminally ill people in general in a kind of abstract way now,” she wrote after the accident. “It’s also about my husband, Brooke. I still love him, that’s a simple fact. What if he wanted to die? Can I imagine standing by while his ventilator was switched off?”

“It takes a long time to get ready for anything,” [Brooke] says about his life now. “To get up in the morning, which I kind of hate, to have every day be more or less the same as every other day… and then to spend so much time going to bed. Day after day, day after day, day after day.”

For Brooke, what elevates his life beyond the day-to-day slog of maintaining it – the vast team effort required to keep his inert sack of a body fed and dressed and clean and functioning – is his continuing ability to teach part-time through the University of Utah’s adult-education program.

But if he were to lose his intellectual functioning, he would be robbed of all the things that still give his life meaning ... forcing Brooke to rethink – provided he was still capable of thinking – whether this is a life worth holding onto.

Throughout the first half of last year, Brooke had severe pain in his back and legs, and all the remedies he tried – acupuncture, cortisone shots, pressure-point therapy, nerve-impulse scrambling – were useless. At one point last summer, he decided he couldn’t go on living ...

“Pain eats away at your soul,” he wrote on July 28, 2012, using his voice-recognition software to dictate what he called a “Final Letter” to his loved ones, explaining why he now wanted to die: “For many years since the accident I have been motivated by a deep will to live and to contribute to the benefit of others in my small way. I think I have done that. And I am proud of it. But as I have told Peggy over the past few months, I knew that I would reach a limit to what I could do. And I have arrived at the limit over the past couple of weeks.”

[Brooke had] announced that he wanted to turn off all the machines... He was ready to die.

Peggy and Jaycee did what he asked.

Brooke sat back in his wheelchair then and closed his eyes. There were no tears, no formal goodbyes; it all happened too quickly for that. He sat there waiting to die, ready to die, and felt an incredible sense of calm.

Two minutes passed. Three minutes passed. He opened his eyes and saw Peggy and Jaycee sitting on stools, one on either side, watching him.

“Is this a dream?” he asked.

“No, it’s not a dream.”

“I didn’t die?”

To Brooke, it was a kind of miracle – all the machinery had been shut off, just as he asked, but he was still alive. He felt refreshed, as if he had made it through some sort of trial.

But it was no miracle. “I know what his medical condition is,” Peggy tells me later, out of Brooke’s earshot. “The reason he didn’t die is he’s not fully vent-dependent any more. He can go without oxygen for a while, and he can go with the pacer turned off for some time.”

If for some reason Brooke had become unconscious, she and Jaycee would have revived him, Peggy told me, because she didn’t believe he really wanted to die. She thinks what he really wanted was to believe he had a measure of control, that he could ask for an end to his life and be heard. “We showed him that we would do what he asked for,” she said, “and he thought it was real.” But it wasn’t real, I said. It all sounded like an elaborate end-of-life placebo, an indication that in fact he was not in control, that he wasn’t being heard. Peggy laughed and did not disagree.

In retrospect, Brooke says, the whole thing seems kind of comical. He mimed it for me ... He looked good, handsome in his burgundy polo shirt, mugging for the webcam. Some new crisis, some new decision, was inevitable – in fact, last month it took the form of another farewell letter, stating his desire to die in the spring of 2014, which is when he expects to be finished teaching his next course, on Don Quixote. But at that moment, Brooke is feeling good. “I think it will be a productive summer,” he says. And he and Peggy smile.

Following the research and writing of this article, Professor Brooke Hopkins passed away quietly on July 31, surrounded by family and friends

Moving and powerful insight about the strength of our emotional responses when we face a reality that directly challenges our academic principles. How can any of us 'know' what we would want to do until it happens, however sure we are in the abstract? It argues, in my view, towards an open and flexible solution - generally ill-suited to legislative frameworks but what else is there?

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