Yesterday Verily Magazine published an article that I wrote about how my father’s recent slow and painful death from prostate cancer convinced me that assisted suicide is not the answer to suffering. It is a sensitive and very controversial subject, and I was expecting a lot of readers to disagree with my conclusions, so the flood of indignant – even angry – comments on social media and on the article itself came as no real surprise. There wasn’t space in such a short article to go as deeply into how my personal experience is relevant to society and law-making as I would have liked, so I thought I’d address that a little here.
First of all though, I should probably clarify quite a basic point: many people object to the use of the term ‘assisted suicide’, preferring terms like ‘assisted dying’ instead. I keep using ‘assisted suicide’ because I believe that is the most accurate description of what we’re talking about here. The dictionary definition of suicide is: ‘the act of killing oneself intentionally’. Someone who chooses assisted suicide is intentionally seeking to end their own life, and they want medical help to do so. If we’re going to have an honest discussion about this, we have to call it what it is. Whether the actual act is right or wrong is another matter.
One thing that pretty much all of the objecting comments have in common is an underlying accusation that I am trying to tell other people what to do in an area where it should be totally up to their own personal choice. What was right for us isn’t necessarily right for everyone. Who am I to tell people that they can’t decide how to end their lives, that they must stick with it if they don’t want to? My father didn’t want assisted suicide, but if he had and I had stood in his way, I would have been a horrible selfish monster. And I am an awful person for telling people what they can and can’t do, right?
So, when it boils down to it, this is an argument about freedom and choice.
The thing is, I think it’s very disingenuous to claim that you are not directly impacting my life if you are campaigning for this change in legislation; to accuse me of standing in the way of your personal freedom, without acknowledging that you are doing the same to me. You may think that I can happily ignore any changes in the law that I want to, that it doesn’t have to concern me, but you’re wrong. You’re talking about making a radical change to the society in which I live, to the society in which I will someday die, and that is something that affects me in a very real way. I have every right in the world to protest that, quite aside from the personal experience I related that informs my views.
The fact that these proposed changes to our law wouldn’t just impact the select few who choose assisted suicide without affecting the rest of us really hit me when my father was dying, and that is why I decided to share our story. The very week before my father died, a proposed change to British law allowing assisted suicide was being discussed in the House of Lords, and in a horrible twist of fate, the experience our family was going through made us a textbook case for the debate. Everywhere I turned, the press was full of it, and it felt like they were all talking about us. It was as if they were putting value judgements on the last few years of my father’s life since his terminal diagnosis, crowding into my head and telling me I was selfish for being glad that assisted suicide wasn’t an option so that we could have as much time as possible together without the added stress of having to consider an ‘alternative’ to him seeing life through to the end.
As I sat by his bedside in the hospice during those last weeks with my family, utterly grief-striken, I was unspeakably grateful to the nurses who shifted his weight so that he didn’t get bedsores, who kept checking his pain relief was working even when he no longer proactively told them. We put ice chips on his tongue when he could no longer drink to relieve the dryness in his mouth. When his lungs started to shut down, my mother made sure that he was given oxygen to prevent him feeling like he was being asphyxiated (a childhood fear of his); it couldn’t make him live longer, but it made him more comfortable. We held hands and told him we loved him, over and over again.
It wasn’t about trying to keep him alive, stringing out the suffering longer than was necessary; it was about making every last moment he had with us as comfortable as we possibly could. I’m not arguing that people have to accept treatment for their terminal illnesses, though in our case we were glad to buy as much time as we could. All I am arguing is that we cannot pass a law that permits doctors to kill people, even as an act of mercy. If assisted suicide laws become widespread, our already stretched palliative care systems will fall into horrendous neglect. For every terminally ill person who claims that their choice to end their life impacts them and them alone, there is another terminally ill person whose palliative care will suffer if the campaigners have their way, placing an even heavier burden on terminally ill patients and their families than they already have to carry.
I can’t stress this point enough; for all that suffering is an intensely personal subject, in debates about changing the law it is anything but private. The motto of the hospice where my father died was ‘Believing every moment matters’. Would our society think this way if assisted suicide became widespread? Would our doctors and nurses still be properly trained in palliative care? Would it not be the case that more of us would start to think like the Lithuanian Health Minister, who has recently said that euthanasia is a good alternative where palliative care cannot be afforded, opening up the way for euthanasia of the poor?
Looking at countries where assisted suicide has been legal for a while is telling; in the Netherlands, the number of mentally ill patients killed every year has reportedly tripled in recent years. Earlier this year, Belgium extended its euthanasia laws to children and minors. Where the Hippocratic oath is scrapped, a whole host of nightmarish scenarios become possible, even probable.
Activist Penny Pepper also believes that assisted suicide threatens some of the most vulnerable members of society; not only the mentally ill, children, and the elderly, but also disabled people like herself. She argues that her life is just as valuable as any other, despite pain being ‘a constant’ factor. (That she even has to remind us of that is a mark of where this debate is heading.) She is afraid, like me, of what would happen to palliative care if assisted suicide laws were passed. ‘As an activist I want to rage, rage against the dying of the light, with every beat of my heart’, she writes. ‘I want assistance to live now; I want decent social care, left alone by government and not subject to cuts; and I want palliative care from doctors doing what the best of them do to the highest degree – helping me to live well.’
I do not want to live in a world where people kill themselves for fear of being a burden, as Giles Fraser so eloquently wrote for the Guardian.
People on both sides of the debate feel moved to share personal stories precisely because, in this case, the personal is not private. Much as my heart goes out to people like Brittany Maynard in their suffering, they are trying to influence legislation which will touch my life, and the lives of my loved ones, so I feel that I must speak out. Is she allowed to make her pain public in defence of her beliefs and choices, but I am not? Ultimately, whoever is right, I don’t think that’s consistent or fair.
Perhaps the objection to the term ‘assisted suicide’ is founded on the fact that it implies a choice. Perhaps people who seek assisted suicide don’t feel like they are choosing to die because they have already been given their death sentence, but rather that their hands are being forced by horribly difficult circumstances from which they can see no escape but a quick and painless death ministered to them by a medical professional. I understand that, and I sympathise; I really, really do. I know what it is like to reach the point with a loved one where you wish for death, knowing it will be a kind of merciful release when it comes. I know what it is like to be haunted by images of a dying face for months after the difficult passing of a loved one. I won’t deny the pain and trauma of these experiences, or try to claim I have all the answers and a neat theory of life, the universe and everything.
But, even though at first to many it may seem counter-intuitive, my father’s struggle with cancer has convinced me that if we really want to help the dying, we need to make the time that they do have left better, not cut it short. Better pain relief, better nursing, better care. That is what assisted dying should mean. No one should ever have to turn to suicide, assisted or otherwise. Some life, even when it is severely compromised, should always be better than no life.
That is what I will fight for until it’s my turn to leave this world, and if you want to call me selfish, so be it. Just remember that no one ever makes a choice like Brittany’s in isolation, and that if you change the law it will impact me and everyone else in the society we all share.