I’m glad the debate on assisted dying is forging ahead. But few understand why it frightens so many
Human beings are not good at talking about death. That includes politicians. It is ironic – though understandable – that the one life event we will all experience receives barely any political attention.
Hospices have their budgets cut in real terms without pushback; many receive no funding from the state in the first place, instead relying on piecemeal charity. Care homes, where large numbers of us will live out our final days, are frequently neglected too.
Meanwhile, the nature of our death – namely, the right to control it – is still seen as a taboo. UK governments have historically sidelined the issue, even as other nations, from Canada to the Netherlands, have grappled with it.
Until now. On Thursday, MPs published the findings of a 14-month inquiry into assisted dying. The inquiry – which attracted more than 68,000 responses from the public – made no conclusive statement but instead collected evidence as a “significant and useful resource” for future debates.
That debate is no longer abstract. Legislation is making its way through the parliaments of Scotland, Jersey and the Isle of Man that, if passed, would enable competent adults who are terminally ill to be provided at their request with assistance to end their life.
The argument for assisted dying is compelling, not least when high-profile people such as Esther Rantzen and the late Nicholas Dimbleby speak honestly of their fears of the end. “They didn’t suffer” is a natural and common response when someone dies and a quiet admission that some people do. For the unfortunate or unsupported, the final weeks or months of life can involve the deepest pain, indignity and distress. It is a disservice to them to suggest otherwise.
And yet it also feels a disservice to pretend that any of this is simple or that giving autonomy to some would not potentially harm others. It is deeply telling that among the many voices calling for a new assisted dying law, I have heard no human rights groups, celebrity or politician mention concerns – as advocated by many disability activists – that a law change could lead to disabled people being coerced into euthanasia, or feeling they had no other option.
We only need look to the countries that have legalised assisted dying in recent years to see these fears realised. One study reported the euthanasia of a number of Dutch people who were said simply to have felt unable to live with having a learning disability or autism.
Many included being lonely as a key cause of unbearable suffering.
In Canada, assisted dying was legalised in 2016 only for those with terminal illness – but five years later, access was widened to those with chronic physical conditions, even if they were not terminal. Roger Foley, who has a degenerative brain disorder, told the New York Post he felt “pressured” into considering assisted suicide by hospital staff, who raised the subject with him repeatedly. There are also reports that some Canadians have chosen to be killed in part because of a lack of housing. To some, it is more legitimate to give a person in need lethal drugs than a home.
For anyone who thinks “that could never happen here”, consider that it already has in some form. During the height of the pandemic, some people with learning disabilities were given “do not resuscitate” orders without their consent. Women with learning disabilities already die on average 18 years younger than non-disabled women, with many of these deaths found to be avoidable due to unequal healthcare.
It is not as if there is outrage when disabled people die needlessly. More a tilt of the head and an easy acceptance that it was “probably for the best”. Every disabled person who has been told by a stranger in Tesco that they would “rather die than be like you” knows, in the pit of our stomachs, what some members of the public think about the value of our lives. It is easy to dismiss the dangers of a “slippery slope” when it is not you who is at risk of falling down it.
That assisted dying is being considered at a time when the country’s mental and physical health is worsening and destitution is spreading only adds to this. While patients are struggling to access treatment from the NHS, and older and disabled people are being left without even basic social care, it is not fearmongering to suggest that economic and social factors shape individual choices – even when those choices look like “autonomy”. It is hard to trust the state to help marginalised people to die when they fail to support them to live.
Advocates of assisted dying say there will be “safeguards” in place to protect older and disabled people who might be coerced by abusive family members. That may well be, but it is naive to suggest such protections could be foolproof. Some matters cannot neatly be reduced to a rulebook or a few lines of legislation; they run deeper, leaking into the fabric of society and what it means to be alive.
This is not to say that the UK shouldn’t go down the path of legalising assisted dying, but we must at least do so with eyes wide open. The right to die does not exist in a vacuum: it fundamentally alters the doctor-patient relationship, and risks making members of society who are already vulnerable that little bit more insecure. Perhaps that is a price worth paying to end some terminally ill people’s suffering. Perhaps it is too much to ask. There are no black and white boxes to tick labelled “right” and “wrong” – just the messy, painful grey of being human.
In the coming months, politicians will correctly dedicate hours to discussing the right to a good death. Imagine, though, if they were to give equal attention to the right to a good life: from building social housing, exploring a basic income, investing in mental and physical health services, to – as the inquiry recommends – funding universal coverage of palliative care and more specialists in end-of-life pain.
In our final days, each of us deserves as much peace and care as the state can provide. That we also deserve it in life may be the real taboo.
• Frances Ryan is a Guardian columnist
sions last and what things are just a phase.
The most recent of these developments has been the slow transition to placing children in daycare.
This is a difficult decision, both emotionally and financially. Part of you feels like a failure for having to waste your time on pointless frivolities like working 40 hours a week so that you could afford to feed the baby, not to mention the hours of daycare (and all of a sudden we’re stuck in a vortex).
You tell yourself things to help put your child at the back of your mind through the workday: It’s better this way. They’re learning to socialise. They’re making friends. They are being engaged and stimulated in ways that you simply wouldn’t be able to replicate, were you at home juggling parenthood and a career. It’s good, it’s fine, stop worrying about it. It’s fine.
The advantage the modern parent has now is a constantly connected world. This is also one of the worst things about being a modern parent.
Many daycare groups now have closed Instagram pages where you can see photos of your child throughout the day and feel like a monster as you skip past the other boring kids on the way to your perfect angel. Some daycares have daily emails with short essays on exactly what your child has been up to today. They have WhatsApp groups to share useful information, by which I mean to slowly – with a 100% certainty – devolve into weird social experiments with at least three off-shoot side chats to discuss the freaks in the main chat. Then, there’s the app.
The Daycare App is a fairly recent phenomena. It always has some weird name like BLOMP or FADDU, something that sounds like it’s a one-worldcompany in a schlock sci-fi film. Outwardly, they’re simple programs designed to help you book in your sessions and track payments. Great, easy.
They also offer instant communication with your daycare provider, and I can only hope this comes with hazard pay, because speaking for myself (and every single other parent ever), we are completely nuts. Given the opportunity, we will ruin your life with a series of pointless, in-depth questions so that we can get enough insight to drown our guilt.
It’s part of the reason why daycare providers’ pay packets, in a just world, would resemble the kind of hauls of gold and precious gems previously collected by Spanish kings.
All of these features are perhaps a bit much, but nevertheless practical enough to be justifiable. It’s all the “bonus features” that send these things into the realm of the dystopic.
Friends have received apps that claim they provide real-time updates on your child as well as “tracking their stats”, like they’re an NBA player rather than a child at playtime. And look: I am a degenerate. If you give me a chance to place a same-game multi on my child’s daycare performance, I’m going to do it. I’m betting on the under for lunch eaten, the over for toys put in her mouth, and if the conditions are right she might just lodge a triple-double of slides down the slippery dip, bouncy balls kicked and tears in the sand pit.
There are invasive fears for me. I do not know these companies. I do not wish them to be involved in raising my child. We are navigating raising a generation with a digital footprint and it still isn’t clear just what the consequences for all this might be.
I’m one of those unfortunate people addicted to statistics. I’m tracking my calories, my steps, my sleep, my oxygen intake, my impure thoughts per minute index. If it’s possible to assign a numerical value to it, I’ve done it, and I’ve obsessed over how to move that number up or down.
That’s not something I want for my child. I want development to move at its own pace. I want her to become a person, not a draft prospect for the upcoming season.
It’s why I’m choosing to opt out. Except you can’t. None of us can. I’m going to download it like everyone else and click “I Accept” without actually reading any of the disclaimers and hope that this doesn’t come back to bite me. That’s modern parenting.
• James Colley is the head writer of Gruen and Question Everything as well as the author of The Next Big Thing via Pantera Press
I do not know these companies. I do not wish them to be involved in raising my child