As the UK parliament considers legalising assisted dying, Prospect is launching “A Good Death”, our project examining every angle of this difficult debate. Our correspondent will be asking: what makes a good death? And how has liberalising euthanasia laws worked in other countries? You can follow our coverage here.
I once told my eldest son that if it came to it, I should be plonked on a beach in Thailand with a big fat spliff and a subsequent cocktail of narcotics sufficiently potent to ease me blissfully out of life, into oblivion. This was long before I was diagnosed with Parkinson’s and was more of a joke than a plan. Not a funny joke, I admit, and further evidence of my poor parenting. The serious bit was flying a flag to make him aware of my general attitude to the question of what is now called “assisted dying”. I’m in favour. In theory. Rather a good death than a horrible life. But I never really thought it would be relevant to me, for reasons I’ll come to in a moment.
I’d put little thought into my inappropriately jaunty suggestion. No reflection on the fact that if he did something like this he’d probably be charged with both drug dealing and murder. No reflection on the intolerable moral conflict inherent in asking a loved one to help kill you. No reflection on what the second “it” might look like in the phrase ‘if it came to it’. Would “it” be a terminal diagnosis or unbearable pain? Who decides what “it” is—me obviously, but what is the role of relatives, doctors, the state? What triggers “it”—a prior declaration, a diagnosis, a judge? I had answered in my own mind the question “is it ever right to get help killing yourself if life becomes intolerable?” but hadn’t bothered to even ask the most obvious of the myriad questions that it raises.
Even now I am unsure what I think the right answers might be. Perhaps in a year or so, with your help that might change. The plan is that this project, titled “a good death”, runs for a year, tracking the debate day by day as it unfolds.
Let me be plain: I have no desire to die, assisted or otherwise, but why did the “death on a beach” seem like such an unlikely possibility? My father died of his second heart attack when he was 72 and I’d been diagnosed with high blood pressure before I was 30. Every moment since then has felt like a blessing and extra time. I’m 67 now. With the help of my excellent GP, and none at all from my “lifestyle choices”, it is under control. I take a shedload of pills every morning and seize the day lest it is the last.
Parkinson’s has, ironically, dramatically lowered my blood pressure but also made me think seriously about a potential exit strategy. Basically, when you have Parkinson’s the brain cells producing dopamine steadily die off. Dopamine is a weird substance which does lots of jobs, controlling movement, motivation and the reward pathways, as well as connecting brain cells. It is a both a sort of cerebral WD40 and the voltage in the wiring. Its loss leads to a strange multi-faceted condition that affects everyone differently. I don’t have a tremor, but my voice is very weak, as are my hands, and I live life in slow motion, staggering around as if I’ve had one too many (even when I haven’t). But three things are true for all of us Parkys. It steadily gets worse, it doesn’t directly kill you (choking and falling can) and it is currently incurable.
This time next year I could be much the same, or very much worse. Decline is certain but the speed of progression is completely unpredictable. So, for me, the future is uncertain. Indeed, it is a suitcase of horrors kept buried deep at the bottom of the garden. I’m a coward, wary of looking at the contents, fearful of unleashing the demons of despair. But I’ve taken the odd peek and know it could contain, among other delights, double incontinence, loss of the ability to walk or talk, dementia, blindness and agonising cramp-like pain. It is little wonder the current debate on assisted dying is personal: more than just a topic fascinating and complex enough to tempt an old hack out of retirement. But it is that too.
Let’s go back to basics. Killing yourself has been legal in the UK since 1961 but “it remains a criminal offence for a third party to assist or encourage another to commit suicide”. The current bill, proposed by Labour MP Kim Leadbeater, seeks to change that in England and Wales. It would allow terminally ill adults to get help with doing the deed. To my dismay, the age-old Christian attitude to suicide still infects the whole debate. The bioethics department of one Catholic university quotes the Catechism of the Catholic Church: “It is God who remains the sovereign Master of life. We are obliged to accept life gratefully and preserve it for his honour and the salvation of our souls. We are stewards, not owners, of the life God has entrusted to us”. Thus an act which “causes death in order to eliminate suffering constitutes a murder gravely contrary to the dignity of the human person and to the respect due to the living God, his Creator. The error of judgment into which one can fall in good faith does not change the nature of this murderous act, which must always be forbidden and excluded.”
To which my politest response is the first line of Patti Smith’s glorious rendition of “Gloria”—but I can get much ruder in my outrage that anyone should impose their fiction on my life. Or death.
Of course the serious, thoughtful ethical considerations prompted by religion should form a huge part of the debate. And they will. But I feel strongly that other people’s theological speculation shouldn’t restrict my choices. The God-driven criminalisation of suicide seems a specific of our western Christian heritage. There were and are very different attitudes in other parts of the world and at different times—think ancient Romans falling on their swords to protect their honour or the Japanese warrior’s seppuku. How does that impact Japan’s attitude to assisted dying? I don’t yet know but will find out.
The most disturbing, moving piece I’ve ever read on suicide is by the hard-right Japanese nationalist Yukio Mishima, who killed himself by the same grotesque method he describes in the short story. Disturbing because it evokes such empathy for someone whose politics and means of death are both loathsome to me. I digress. But I do and I will, quite a bit. This blog will explore attitudes to a good death in other cultures and times, and in fiction, in the hope they will shed light on our own culture as it evolves.
But like much else in this debate my own basic attitude to suicide itself is a paradox. I find life very sweet, and all the sweeter as life’s pleasures and opportunities contract—carpe diem, wrote Horace, “seize the day” is the standard translation but the original metaphor implies “pluck the ripe fruit before it rots”. (Or so I read: I failed my Latin O-level.) The idea of anyone killing themselves is abhorrent to me. Life may not be sacred but this entropy-defying miracle, apparently rare in the universe, is to be cherished and nurtured not wantonly thrown away. I’m aware of the irony that this is pretty close to the Christian position—minus the bossy Sky Fairy.
So much for the background. The very modest bill before parliament would allow doctors or medics to help someone suffering from a terminal illness to die—hemmed in by some pretty strict conditions. Much of the opposition to this is based on fears that it will be a “slippery slope” to further relaxations in the future.
Those making this case are skating downhill on thin ice—for most it is an excuse to shelter behind, while keeping their real, religious, objections hidden. The central question I would ask them is “if this bill, with all its safeguards including two doctors, a High Court judge and a terminal diagnosis, could be locked in place never to change—would you then back it?” If not, then let’s not indulge this specious defence of the status quo.
This bill is unlikely to become law. Even if it did it falls well short of anything that would help those of us with Parkinson’s. No doctor could ever say we have only six months left to live. But as my fellow Mover and Shaker Jeremy Paxman has said, Parkinson’s “may not kill you but it will make you wish you hadn't been born.”
It is true that I and many others who support a change in the current law do so in the hope it creates, if not a slippery slope, a smooth pathway climb to a better, more liberal, bill. That would genuinely open the door to the potentials abuses today’s opponents claim to fear; that callous or unscrupulous relatives will bundle off tiresome grandad to Switzerland to get their grasping hands on his house or money. It is perhaps more of a worry that granny, worried about becoming a burden, will decide to sacrifice her life on the altar of her family’s indifference. It is possible she might be encouraged to die before 2028 when the recent budget’s new steeper inherence tax kicks in. But would two doctors and a High Court judge not spot this?
So, in principle I’d argue for that terminal diagnosis requirement to be replaced with “intolerable suffering”. For our Movers and Shakers podcast, which discusses life with Parkinson’s, we had an episode about assisted dying where the guest was Lord Falconer. The former Lord Chancellor, who has subsequently withdrawn his own bill in favour of Leadbeater’s, argued eloquently that anyone suffering from severe clinical depression is, almost by definition, likely to find life intolerable. Do we want a doctor to aid their suicide? Or that of a young person with anorexia? Or for that matter a lovelorn teenager who cannot see the possibility of continuing without their last infatuation? The counterargument was put lucidly by our very own (ex) High Court Judge, Sir Nicholas Mostyn.
So what about using the criteria of intolerable physical pain? Of course, one woman’s “quite bearable” pain may be “intolerable” to another, but that is a quibble, not an objection. My main concern is very different—when I have so lost my current zest for life because it is too painful, too dreadful to carry on I am not likely to be in a fit state to make that decision. “Make a living will! And do it now!” you cry. But what is the trigger—how does the current me know what a future me will find bearable? And to be straight, I don’t even know what a “living will” is—one more thing I need to research.
This isn’t an easy topic to debate. We are said to be bad at talking about death—I know I am and—here’s another paradox from your “assisted dying correspondent”—find it morbid and unnecessary to bang on over much about the trappings of a fate that awaits us all. My wife finds it sad I rarely visit my parents’ grave and put flowers on it. I, in my non-conformist soul (cultural heritage, not beliefs) find such symbolism pointless frippery—until I light a candle for them in some far-off cathedral surrounded by the evocation of their tortured god and return home with the desire to place a posy in the village churchyard. Not strictly relevant, I know, but the point is this current debate is chock full of contradictions which we have to strive to hem with rules. It is a debate driven by fear of pain, fear of injustice, fear of bullying, fear of grasping relatives, fear of God. It is a debate full of personal passions, many based on personal experience, some on misconception and prejudice. Both sides will produce competing horror stories, slapping down narratives like an ace in the hole, all the time raising the emotional stakes. In this supercharged atmosphere, we must attempt to make rational judgements about precise language that will bear cool analysis in the light of day when the heat has dissipated. But then that balance goes to the very heart of democratic politics.
And how will I approach the task of tracking the debate? Above all with curiosity and a desire to understand the point of view of those I’m inclined to disagree with. By nature, I am opinionated, pungent to the point of arrogance, but after a working my whole life in broadcast journalism, mostly at the BBC, this is tempered by a desire to tell the whole story as objectively as possible without ironing out the inconsistencies and myriad subtleties that make people such a joy. It also helps that I often don’t know what I really think. Certainly in this debate I know where I’m coming from, but don’t yet know where I’m going to. Dear reader, help me... responses are not only welcome but required. Your input is vital.
