Louise Shackleton is among the crowds who gathered outside Parliament on Friday as MPs began the debate on the assisted dying bill with votes likely on some key proposed changes.
The 58-year-old from North Yorkshire has become a passionate campaigner for the bill after her husband Anthony was diagnosed with motor neurone disease (MND). He lived with the disease for six years before deciding to end his life at Dignitas, in Switzerland, in December 2024, feeling like he had “no choice”.
“My husband had rung his four close friends and he had spoken to all bar one who he couldn’t get hold of,” Louise tells The i Paper.
“Anthony was so upset by that, that he wasn’t able to have the right conversation and to be able to say ‘see you later’. He’d gone out for lunch with his parents, but of course they didn’t know [his intentions]. Knowing the pressure and pain I was under, and knowing the day was going to come, they were spared that suffering.
“The positive bit about all this – which is what Anthony said – was that they didn’t know he was giving his last goodbyes, so there wasn’t any negative emotions put on him, with their grieving and pain at the anticipation of his loss. It was Anthony saying goodbye in his way and he felt upbeat that he’d left them with a last good memory.”
Louise Shackleton in London, as Humanists UK and My Death My Decision join forces with those who have accompanied loved ones to assisted dying facilities in Switzerland (Photo: Belinda Jiao/PA Media Assignments)Anthony, who died aged 59, was a furniture restorer who had earned worldwide recognition for making rocking horses. Louise travelled to Switzerland with her husband of 25 years – the couple had known each other since they were teenagers – and on her return handed herself into the police.
The law in the UK prohibits people from assisting in the suicide of others, but prosecutions have been rare and Louise, a safeguarding expert who has worked in mental health, children and families, and the Ministry of Defence, remains under police investigation.
A spokesperson for North Yorkshire Police told The i Paper: “The investigation is ongoing. There is nothing further to add at this stage.”
If an assisted dying law had been in place, Louise and Anthony may never have needed to travel abroad and would have been surrounded by family. Instead, they were forced to keep their plans from everyone – even Anthony’s parents – for of others being prosecuted.
However, even if the bill passes, a landmark assisted dying law in England and Wales is unlikely to help people with MND. That is because the legislation would permit a person who is terminally ill with less than six months to live to legally end their life after approval by two doctors and an expert panel – but it is almost impossible for doctors to give life expectancy with that level of accuracy to patients with terminal neurological conditions. As a result, Louise hopes MPs eventually pass a bill that has a wider focus.
Louise adds: “He knew as his disease progressed that he was beginning to choke on food and water so he was extremely anxious that he would choke to death. Even then, there wouldn’t have been a doctor even at that time who would have given him a six-month life expectancy. Anthony was given a 12-month possibility but these diseases are so unstable.
Anthony, who died aged 59, was a furniture restorer who had earned worldwide recognition for making rocking horses.“He may have declined to so rapidly that someone could have said he had two days to live but then the bill wouldn’t have covered him due to all the investigations that need to be carried out. So the bill as it stands doesn’t really help the MND community.
“I hope that when they’re debating it over the next couple of days MPs do consider the wider communities that support this. The debate so far has mainly been about people with a terminal cancer diagnosis and we need to cover all diseases – Parkinson’s, multiple sclerosis, MND. Anthony’s life became brighter when he made his decision because he knew he wasn’t going to end with a horrible death that MND promised him.”
If it takes more than one session to debate the bill on Friday, it will be debated again on 13 June prior to a vote on its third reading. The bill would allow an assisted death for those in England and Wales with a terminal illness with less than six months to live, needing the approval of two doctors and a panel including a specialist lawyer, social worker and psychiatrists.
Amendments proposed by MPs have been gathering support include a prohibition on doctors from raising the prospect of an assisted death with patients and a specialist carve-out for eating disorders such as anorexia, which MPs have voiced fears could be considered a terminal illness in some cases.
At least five more MPs have decided to vote against the assisted dying bill, it was reported this week, including Education Secretary Bridget Phillipson who said she would not change her stance after voting against the bill.
Reasons MPs believe the assisted dying laws won’t work
By Eleanor Langford
Limited bill scrutiny
Many MPs have criticised the decision to present the assisted dying legislation as a private members’ bill (PMB) rather than it being put forward by the Government.
There is historical precedence for using a PMB on laws related to matters of conscience. The legalisation of abortion, decriminalisation of homosexuality and the abolition of the death penalty were all brought in through such bills.
However, such bills have a much stricter time limit. MPs were given only five hours of debate at the bill’s second reading, and will have a similar time limit for future Commons stages.
‘A slippery slope’
Many opponents of the legislation also cite concerns about it leading to a “slippery slope”, suggesting that the bill could be expanded later with undesirable consequences.
Those touting this criticism often point to Canada, where assisted dying has been legal for those with a terminal illness since 2016.
Lack of safeguards
Politicians on both sides of the debate have stressed the need for strong safeguards when it comes to assisted dying to prevent the coercion of patients and unintended consequences of the law.
When Leadbeater first proposed the legislation to the Commons, one of the most talked about safeguards was the requirement for two doctors and a High Court judge to sign off on all requests for assisted dying.
However, this requirement was scrapped and replaced with a voluntary assisted dying commissioner during the committee process.
Palliative care resources
MPs supportive of the assisted dying legislation have argued that the process would complement rather than replace palliative care provisions.
However, fears remain that the new law could divert focus from the palliative care and hospice sector.
With a previous majority of 55 – and two others moving to vote in favour – the bill seems likely to pass next stage. Nevertheless, the shift by a number of previously absent or undecided MPs towards voting against it has led to some concern among supporters of Kim Leadbeater’s bill.
On Tuesday, the Scottish Parliament voted in favour of its Assisted Dying for Terminally Ill Adults (Scotland) Bill. MSPs voted 70 in favour, 56 against on Stage 1 of the Bill, which is about general principles. There will be another two rounds of voting and amendments before the Bill passes fully. No Assisted Dying Bill in Scotland has ever made it past Stage 1.
The key difference in the Scottish bill for Louise – and one that she wants MPs to consider – is that there is no six-month life expectancy rule. Anyone who is terminally ill will be allowed to choose an assisted death. Supporters describe the Holyrood bill as a progressive move to ease the suffering of dying Scots, but opponents say it would fail to safeguard some of the most vulnerable people in society.
The couple had known each other since they were teenagers.“I don’t like that word ‘vulnerable’,” Louise says. “I’m part of the MND community and I’ve never met such strong people in my life.” She lists some of those – Dave Setters, Lee Millard – who were pivotal to the campaign which successfully lobbied the government in 2021 for £50m in funding for the UK Motor Neuron Disease Research Institute – “although we’re still waiting on the last £15m”.
Others include Cath Mair and Sheree Gregg – a nurse from Inverness who attended a lecture on MND unaware that she already had the condition. She was diagnosed aged just 28.
“So to call terminally ill people ‘vulnerable’ is wrong because our MND community is full of very strong people. I haven’t met a weak or ‘vulnerable’ one. They’re very strong, outspoken and driven.”
square ASSISTED DYING Big ReadFour reasons MPs think the assisted dying laws won't work
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Louise points out that it was several years following her husband’s diagnosis that he started to think about an assisted death. She believes in a new law so people have the opportunity to approach their doctors and ask what options are available to them
“I think that would be far more compassionate towards people who are already going through such a difficult time,” she said.
Louise would tell a room full of MPs voting against the bill she believes there would be no “slippery slope”, the argument that legalisation of assisted dying should be opposed because it is impossible to include sufficient safeguards against future expansion of any scheme.
“There is nowhere else in the world that will have this level of safeguarding that England and Wales will have. I know the opponents will say it’s a slippery slope, but the slippery slope hasn’t happened anywhere else.
“This bill is copied from Oregon, USA [which introduced assisted dying in 1997]. There has been no slippery slope in Oregon.
“Where there has been a change in place that have introduced assisted dying it is because that has been asked for by members of public. It has not been medically or politically led. People have lobbied parliaments for change and the people’s voice should be heard.”
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Finally We wish PressBee provided you with enough information of ( My husband died at Dignitas last year – I’m still being investigated by police )
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