Claire Macdonald
Director of Development, My Death, My DecisionIn an exclusive op-ed for Chamber UK, Claire Macdonald, Director of Development at My Death, My Decision, highlights the harm caused by the current law on assisted dying in England and Wales, emphasising the urgent need for reform. With a new bill set to be debated in Parliament next week, she argues for compassionate, regulated options to alleviate unnecessary suffering for patients and families.
My Death, My Decision wants mentally competent adults who are suffering from incurable conditions or terminally ill to have the choice of a medically assisted death.
Kim Leadbeater’s Terminally Ill Adults (End of Life) Bill has its second reading on the 29th of November. This Bill has the most robust safeguards and limited eligibility of any assisted dying legislation in the world. If MPs don’t vote yes to this Bill, then England and Wales are stuck with a law that’s outdated and cruel.
Why Support this Bill?
● It is what the public overwhelmingly wants. Parliament should respect the calls for change and allow adults of sound mind better choice at the end of their lives.
● Who precisely is being helped by banning a dying adult from seeking medical help to die? Who wouldn’t want someone they love to have the option to avoid the last few terrible weeks, when nothing more can be done?
● Three former Directors of Public Prosecutions have said the current law is “a real mess”.
● The Office of Health Economics estimates that 16,000 people a year in England are dying with pain not at all relieved, and even in an “aspirational, best case scenario where every patient receives the very best standard of care as provided in hospices, over 5,000 people die without any pain relief at all”.
● The Health and Social Care Select Committee inquiry stated in countries where assisted dying has become legal, palliative care is not adversely impacted and in some cases improves rapidly.
● The Health and Social Care inquiry also said there’s no evidence of a “slippery slope” – if a country legislates for the terminally ill only, like Oregon and Australia, (and this Bill) that is where it stays. This Bill is for dying people only, to avoid the last few grim weeks and months. That is what MPs will be voting on. Not for people with mental health illnesses, not for the disabled, not for children. Saying Kim Leadbeater’s bill is a slippery slope towards uncontrollable eugenics is scaremongering of the worst sort.
● 31 jurisdictions permit medical assistance to die. Not one has sought to reverse their law.
Autonomy is Currently Being Denied – For Whose Benefit?
Around the world, public confidence in assisted dying remains high. Knowing there is a last resort choice gives comfort to many – and a third of people who are granted an assisted death find they can cope, and die without assistance.
There is no evidence that coercion is an issue. This bill makes it a specific offence to coerce someone – 14 years in prison. Putting it crudely, if a greedy relative wanted to get their hands on granny’s nest egg, coercing her to apply for an assisted death would be a very risky and uncertain way to seek to benefit – and there’d have to be two crooked doctors prepared to risk their careers and face a long prison term by colluding with the criminal relative. Do opponents of this bill seriously suggest there are British doctors this criminally inclined? Is this far-fetched risk important enough to ignore the 16,000 people dying each year in pain?
Under this bill’s safeguards, a dying person will be asked eight times to confirm their request – and they can change their mind at any time. A tiny theoretical risk doesn’t warrant a total ban and taking away everyone else’s right to autonomy.
Much of the opposition to assisted dying comes from fear of change and from an illiberal imposition of one group’s cultural or religious beliefs on another. Some groups are financed by conservative Christians who oppose gay rights and abortion. Is assisted dying to be England and Wales’s Roe versus Wade issue?
Support From 75% of Disabled People
Opponents claim to speak for all disabled people, saying assisted dying will change the way society treats them; that they’re “terrified”. Nuffield Bioethics states that 75% of disabled people in England support assisted dying. There is little acknowledgement by opponents that it can feel pretty terrifying if you have Motor Neurone Disease or stage 4 cancer and know that your future holds little but prolonged suffering.
The majority of disabled people want the same rights as others, and autonomy and choice is really important to all of us.
Palliative Care Cannot and Does Not Relieve All Suffering
Most British doctors support assisted dying and a recent nurses’ poll did the same. No doctor will be compelled to participate. My Death, My Decision hears from doctors and nurses who feel “scarred” by being begged by patients and their families for help to die and being unable to do anything.
It isn’t “palliative care versus assisted dying”. Most people who have assisted deaths have been in palliative care. It’s a perfectly rational act to reach a point where death is a preferable choice over say, vomiting up faeces or suffocating slowly, unable to communicate.
Palliative care cannot relieve all pain, and dying slowly, albeit peacefully, in a drugged haze is understandably a state many would choose to avoid. It’s already legal to refuse treatment, even if it hastens your own death. It’s legal for doctors to prescribe terminal sedation that might contribute to death over a number of days. I don’t understand how it can be more acceptable for someone to be helped to die slowly, often without consent or proper oversight, but the law doesn’t permit a person to voluntarily request medical help to die, having made a careful, well-informed choice, having said their goodbyes to their loved ones?
For someone who is dying or suffering from a condition like Multiple Sclerosis, Huntington’s or Motor Neurone Disease, that cause immense suffering sometimes for many years, just knowing that legal help to die is available when the time comes, is a huge comfort. It helps people to live longer, and better.
One British person a week travels to Switzerland for an assisted death. Nobody wants to die in an anonymous industrial estate, with the risk of 14 years in prison for a relative who goes with them. Most of us would prefer to die at home, with our family and friends with us.
Too many terminally ill people take their own lives. Some even refuse food and drink to end their suffering – how barbaric in 2024. My Death, My Decision supports better palliative care – but it can work alongside assisted dying, as it does in Belgium’s largely Catholic-run hospices. Saying that England and Wales must wait until our internationally recognised good palliative care is excellent for all ignores the current harm that will continue until this hypothetical perfect state is reached.
Whose Life Is it Anyway?
Clare lives in Devon. She has stage 4 cancer. She wants to live to see her daughters through university. Clare is grateful for every wonderful day, but her main anxiety is that her much-loved daughters should not have to witness her suffering unnecessarily at the end. Jean, 43, from East London, has an incurable, progressive condition that is gradually robbing her of her bodily functions – towards the end Jean won’t be able to swallow or communicate. Jean asserts her right as a disabled woman to choose the manner and timing of her death. Dave went to Dignitas with his wife, Christy, who had MS. Kay, a nurse of 40 years, saw her parents die terrible deaths and thought it would be better for her sister in a hospice – but no. Kay says she is making plans for an assisted death in Switzerland at some future date, because “I’m terrified of dying in this country”. That’s from a nurse with 40 years’ experience. What will Clare, Jean, Dave and Kay’s MPs say to them if they put assisted dying in the “too difficult” box, and don’t support this carefully written and highly safeguarded bill?
Evidence That Assisted Dying is a Compassionate and Safe Option
There are many new MPs in Westminster and it’s understandable that they are daunted by being asked to vote on such an important social change. But not voting is a vote for a totally unsatisfactory status quo, which is legally muddled, lacks compassion, criminalises someone for travelling with a loved one for an assisted death abroad and is causing untold physical and emotional suffering.
The Terminally Ill Adults (End of Life) Bill isn’t being rushed through – it is ten years since the Supreme Court said Parliament should act. This issue has been thoroughly discussed and examined – there has been an assisted dying/assisted suicide inquiry by the Health and Social Care Committee, a Nuffield Citizen’s Jury, a Westminster Hall debate. Switzerland has permitted assisted dying for 80 years, Oregon and the Benelux Countries for over 25, traditionally Catholic Spain and Portugal most recently.
Assisted dying legislation is progressing in Scotland, Jersey, the Isle of Man, the Republic of Ireland. England and Wales will soon be a speck on a map, surrounded by countries which are kinder and safer places to die.
We urge MPs to look at evidence from respected bodies such as Nuffield Bioethics, the Office for Health Economics, The Health and Social Care Select Committee inquiry. Westminster should have the confidence to base their decisions on evidence, and vote in support of the Assisted Dying Bill.
Final Thought
A closing message from Terry Pratchett: “I would like to die peacefully with Thomas Tallis on my iPod before the disease takes me over and I hope that will not be for quite some time to come, because if I knew that I could die at any time I wanted, then suddenly every day would be as precious as a million pounds. If I knew that I could die, I would live. My life, my death, my choice.”
To read more opinions on the new Bill, please click here.