For the last week of Simon Biggerstaff’s life, “pretty much all he said was ‘make it stop, I can’t stand it’,” according to his widow, Sue.
Her husband had been diagnosed with an aggressive form of motor neurone disease and was in “horrible pain”, she said. Previously a fit, active man, he was paralysed from the neck down, with a twisted bowel and barely able to speak.
“He was starting to rot away, his body was breaking down while he was still alive. He had no dignity, and he wanted to go. He’d had enough of his life as it was, and there was nothing I could do,” she said.
“We filled him full of drugs but they weren’t doing anything in the end. He was in pain 24 hours a day.”
He died, aged 65, in May 2022. Sue Biggerstaff had never given any thought to assisted dying until Simon got sick, but now she is one of its most vocal advocates on the Isle of Man. In July, she addressed members of the Tynwald, the island’s parliament, as they debated a bill to legalise assisted dying, urging them not to delay its passage.
Soon after, the bill – which allows terminally ill residents of the island to end their life at a time of their choosing – passed in the House of Keys. Next month, the parliament’s legislative council will begin to scrutinise it, and it is expected to become law some time in 2025.
Legislators in Scotland and Jersey are also considering bills to legalise assisted dying. At Westminster, Lord Falconer has proposed a change in the law, and a Commons private member’s bill is also expected to get a hearing in the coming months.
Campaigners say momentum is building behind legalisation. They point to a sea change in MPs’ views on the issue since it was easily defeated in the last vote in the Commons in 2015, and clear, consistent support for assisted dying among the public. The prime minister is in favour of change. This is an issue whose time has come, they say.
The legalisation of assisted dying would be on a par with other major societal changes in the past 60 years, including abortion rights, the decriminalisation of homosexuality and introduction of same-sex marriage, say its supporters.
“This is progressive reform,” said Dr Alex Allinson, the legislator behind the Isle of Man bill who still works locum shifts as a GP on the island.
The reason why his bill has made headway where previous attempts to change the law on the island have failed, he said, is “down to the fact that our society has changed, and the people who represent our society in parliament have changed”.
He added: “We’ve got far more women than we’ve ever had. We’ve got far younger people than we’ve ever had. We’ve got people from far more diverse backgrounds than we’ve ever had.”
After a string of amendments, the bill requires five years’ residency on the island, a prognosis of 12 months or less to live for adults over the age of 18, and mental competency. Life-ending drugs must be self-administered, and a conscience clause allows health care professionals to opt out of delivering the service.
The bill was supported by two-thirds of the 24 members of the House of Keys, but there has been opposition to assisted dying from the Isle of Man Medical Society (IOMMS) and from faith organisations.
A poll conducted by the IOMMS last year found that 75% of health care workers were opposed to legalising assisted dying, and a third said they would consider leaving the island if the bill became law.
Fiona Baker, a GP on the island, said she and others were concerned that people may feel under pressure “at a really vulnerable time in their life” to decide whether to opt for an assisted death. “People may be forced into thinking this is the right thing to do, not to be a burden on their families or the NHS. People will end their lives prematurely.”
She also feared that the criteria for assisted dying would be widened – the “slippery slope” argument raised by many opponents who point to the experience of other countries, such as Belgium and Canada.
“The push [to broaden criteria] will come – to children, to people who aren’t terminally ill but are suffering. It’s inevitable if you look at what’s happening everywhere else,” said Baker.
“It’s just not needed. What is needed is better funding for hospice and palliative care. It just feels wrong. If you see someone standing on a bridge about to leap, your natural instinct is to talk them down, not push them off.”
One retired GP suggested that the legalisation of assisted dying could result in difficulties in recruiting medical professionals. “We don’t want the reputation of being the Dignitas of the UK,” said Graham McAll, referring to the Swiss assisted dying service. “And there could be a risk of attracting the wrong sort of [health care staff].”
McAll, a member of Manx Duty of Care, a group of about 150 health and social care workers, also cited inaccuracies in medical prognoses, the risk of coercion, and the complexities of establishing a patient’s competency as reasons for opposing the bill.
after newsletter promotion
Julie Edge, a member of the House of Keys and opponent of the bill, said the consultation process had been flawed. “We have a duty and responsibility to ensure people are well informed. There’s been poor communication, and I’m very disappointed that there is to be no referendum.”
A consultation process run over eight weeks starting in December 2022 resulted in 3,326 submissions which were split roughly 50:50 in favour of and opposed to assisted dying. An opinion poll conducted on the island for Dignity in Dying showed two-thirds in favour of changing the law.
Edge also invoked the slippery slope argument. “They [the bill’s supporters] want to get this through and then they’ll extend it. The safeguarding in the bill isn’t watertight.”
Allinson acknowledged that the law could be amended in the future, but “any change will have to go through the same [legislative] process – it can’t be done at the whim of one politician. It would only happen if there was a change of opinion among the public and politicians. I don’t expect there to be any significant changes.”
Clare Barber, another member of the House of Keys and a registered nurse, said: “This is about choice. It’s not about forcing anyone to avail themselves of an assisted dying service but not having a service denies people that choice – 99% of people won’t be touched by this.”
Acknowledging the legalisation of assisted dying would be perceived as significant social change, Barber added: “We already turn off life support machines, withdraw medical support in cases of no hope of recovery, and increase pain relief, sometimes to the point of putting a very sick person into unconsciousness.
“All these things are variations of what we’re talking about with assisted dying as part of end-of-life care. But this [change] would give the person concerned control and autonomy.”
For Millie Blenkinsop-French, whose son James died “the most excruciating death” from cancer in 2021 at the age 51, the legalisation of assisted dying on the island cannot come soon enough.
“He was in agonising pain. I bought vodka and tablets, but I hung on and hung on until it was too late, he couldn’t even swallow. I was going out of my mind. Nobody should have to die like that,” she said.
Blenkinsop-French, 81, had a mastectomy in 2019 after being diagnosed with breast cancer. “I’m terrified of it coming back. Cancer can be so cruel. We’re all going to die, but it’s how we die that’s important, and the quality of life in those last weeks and days.”
Sue Biggerstaff says she has had “amazing support” for her campaigning for change. “People come up to me in the street and thank me. It’s important this bill passes not just for the Isle of Man, but to encourage other places to follow suit.
“It’s not about shortening someone’s life, but shortening someone’s death. Simon was dying in pain for two weeks. I’d give everything I have to be able to go back and give him a good, peaceful death.”
