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.
