My terminal illness has taught me how precious life is – but also the value of a good death Nathaniel Dye

FOr I, the assisted dying bill being presented to Parliament is not just a government issue. It’s personal. Think of me as Schrödinger’s cancer patient: living and dying at the same time. There’s nothing like the latter’s impending approach to add momentum and urgency to the former. In the two years since diagnosis, my cancer-ridden body has allowed me to live a surprising amount of life, from a comeback of 100 miles of ultrarunning to a two-month walk from John o’Groats to Land’s End. I have found new meaning in life and campaigning for better NHS treatment has led me to 10 Downing Street. The Prime Minister has said that I inspire the work of his government and, most importantly, my father is proud of me. My sister calls me her hero.

But despite these two life-affirming years, only 10% of people with my disease can expect to survive five years; ready or not, death comes for me. Yes, between chemo and surgeries I have maintained a very good quality of life, and there have been periods when the cancer, although incurable, almost disappeared. Nevertheless, I feel myself growing weaker, and as I near my end it is this that dominates my thoughts. For me, death is not an abstract concept, but a reality that looms large in my future.

How will I die? Pain? I’m no stranger to pain. When my primary tumor caused a bowel obstruction and the epidural failed after emergency surgery, I was racked with pain for not just days, but weeks. Even my internal monologue was reduced to a pitiful whimper, and even though she’s been dead for years, I called for my mother. What kept me going? The prospect that “this too shall pass” was all I could hold on to, but it was enough. I do know this: that pain humbles me, and if I were permanently sentenced to it, I’m sure death wouldn’t be the worst outcome.

What about dignity? My most immediate concern is financial independence: working-age people with a terminal illness are twice as likely to die in poverty as retirees. And of course I worry about losing control of my bodily functions; Living with a stoma has given me an idea of ​​what it will be like, and you get used to it. But if I take this line of thought to its conclusion, if I lose the ability to move, to communicate, to get any joy or purpose out of life, I would honestly have a hard time seeing the point in continuing to go.

So yes, there are circumstances where I might welcome the option of assisted dying. But this isn’t just about me. In the fall of 2011, I lost my fiancée Holly to cancer when we were both 25 years old. The last days and weeks of my first love’s young life were without a doubt some of the most harrowing for me. There’s a whole new level of fear reserved for seeing the pain in a loved one’s eyes. The trauma of watching Holly’s life disappear will never leave me.

There are so many circumstances where the morality of assisted death is questionable. But I’ve seen one that isn’t: that point in the dying process when loved ones exchange a knowing look and perhaps even say out loud, “He’s gone, isn’t he.” When they’re still alive, but you realize you’re starting to grieve. I would gladly sacrifice all my proudest achievements, joys and happiness so that that last part of my ending would be mercifully short. For the sake of my family, do not let this futile night watch last for weeks or months. It’s bad enough that they will probably lose me before I reach forty, and they will carry the emotional weight of my early demise for the rest of their lives. The idea of ​​’being a burden’ is often mentioned in conversations around assisted dying. I suppose I want to keep everyone from trying too hard, but my duty and desire to ease the suffering of those I leave behind makes this sentence sound like the grossest oversimplification.

After all, these issues are incredibly complex – emotionally and intellectually. Who decides? Doctors, lawyers, my family or me? What if, by the time it is clear that assisted dying is the right choice, I am no longer able to make that decision for myself? Can I leave instructions? How would it be done? Who should pull the plug or administer the lethal injection – and who is responsible for that? Does our struggling NHS system have the capacity to deliver this? Where do you draw the line? What about coercion? Will there be safeguards? Are these safeguards subject to erosion, as appears to have happened in Canada? Will the “normalization” of intentional death lead to a higher suicide rate?

I don’t know – I’m just one person hoping for a ‘good death’, whatever that is. But the MPs and gentlemen drafting and debating the Assisted Dying Bill have an enormous responsibility. There are so many stakeholders involved, and countless lives will be affected by this free vote. They have the opportunity to alleviate the suffering of the most vulnerable in society through carefully considered legislation. But if one person dies when it shouldn’t have, that’s undoubtedly one too many.

I hope they find a way. My death depends on it.

  • Nathaniel Dye is a teacher, musician and founder of coloncancerbucketlist.com

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