For me, the assisted dying bill being put before parliament isn’t just government business. It’s personal. Think of me as Schrödinger’s cancer patient: simultaneously living and dying. There’s nothing like the impending approach of the latter to add impetus and urgency to the former. In the two years since diagnosis, my cancer-riddled body has allowed me to engage in a surprising amount of living, from a 100-mile ultra running comeback to a two-month walk from John o’Groats to Land’s End. I’ve found new meaning in life, and campaigning for better NHS treatment has led me to the door of No 10 Downing Street. The prime minister has said that I inspire his government’s work and, even more significantly, 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 for five years; ready or not, death is coming for me. Yes, in between chemo cycles and surgeries I have maintained a very good quality of life, and there have been periods in which the cancer, while incurable, almost disappeared. Nonetheless I feel myself becoming weaker, and as I approach my end it’s 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? In pain? I’m no stranger to agony. When my primary tumour caused a bowel obstruction and, after emergency surgery, the epidural failed, pain consumed me not just for days, but weeks on end. Even my internal monologue was reduced to a pathetic whimper, and 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 had to cling on to, but it was enough. This much I know: that pain is humbling, and if I found myself condemned to it permanently I’m certain that death would not be the worst outcome.
What about dignity? My most immediate concern is financial independence: people of working age with a terminal illness are twice as likely to die in poverty as pensioners. And, of course, I worry about losing control of my bodily functions; living with a stoma has given me an idea of how that will go, and you do get used to it. But taking this train of thought to the end of the line, if I lose the ability to move, to communicate, to extract any joy or purpose from life, I would honestly struggle to see the point in keeping going.
So yes, there are circumstances in which I would perhaps welcome the option of assisted dying. But this isn’t all about me. In the autumn of 2011, I lost my fiancee Holly to cancer when we were both 25 years old. The last days and weeks of my first love’s young life were without doubt the most harrowing of mine. There is a whole new level of anguish reserved for seeing the look of pain in a loved one’s eyes. The trauma of watching Holly’s life slip away will never leave me.
There are so many circumstances in which the morality of assisted death is debatable. But I’ve seen one that isn’t: that point in the process of dying when loved ones exchange a knowing look and maybe even say out loud: “He’s gone, hasn’t he.” When they’re still alive but you realise you have started grieving. I would gladly sacrifice all my proudest achievements, joy and happiness for that final part of my ending to be mercifully brief. For the sake of my family, let that futile bedside vigil not play out over weeks or months. It’s bad enough that they will probably lose me before I reach my 40s, and 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 do want to avoid everyone going to too much trouble, but my duty and desire to ease the suffering of those I will leave behind makes that phrase 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’s clear assisted dying is the right thing to do, I’m no longer capable of making the decision myself? Could I leave instructions? How would it be done? Who has to pull the plug or administer the lethal injection – and have that on their conscience? Does our struggling NHS system have the capacity to carry this out? Where do you draw the line? What about coercion? Will there be safeguards? Are these safeguards open to being eroded, as appears to have happened in Canada? Will the “normalisation” of deliberate 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 lords drafting and debating the assisted dying bill have a huge responsibility. There are so many stakeholders involved, and countless lives will be affected by this free vote. They have the chance through carefully considered legislation to alleviate the suffering of the most vulnerable in society. But if one person dies when they shouldn’t have, that is undoubtedly one too many.
I hope they find a way. My death depends on it.
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Nathaniel Dye is a teacher, musician and founder of bowelcancerbucketlist.com
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