Assisted dying must be expanded to help those with neurodegenerative diseases such as Parkinson’s in England and Wales, a former high court judge will tell MPs this week.
Sir Nicholas Mostyn, who has Parkinson’s, will argue that under the current terms of the law passing through parliament, the vast majority of people would need to have terminal cancer before being allowed an assisted death.
Mostyn said end-of-life suffering for Parkinson’s patients was “intolerable”, with some unable to swallow or breathe. “This is what I’m facing. And I’d like to know why opponents are determined to condemn me to that,” he said.
The former senior family judge said that in his opinion there was no legal possibility of challenging the assisted dying bill, once it became law, to include those with neurodegenerative diseases, as the European court of human rights had already ruled there was no specific right to die.
He will also tell the bill’s committee that plans to have assisted deaths signed off by a high court judge would add an enormous burden to the family courts. Two full-time judges would need to spend their time authorising possible assisted deaths, he will say.
A number of amendments will be submitted to the committee this week, including by the former home secretary, James Cleverly, and the Conservative MP, Ben Spencer, a psychiatrist.
Evidence will be taken in public from more than 50 witnesses, including the chief medical officer, Sir Chris Whitty, the British Medical Association, disability campaigners, and judges and representatives from other countries where assisted dying has been legalised.
Alex Greenwich, an MP from New South Wales in Australia, where assisted dying was introduced 12 months ago, will tell MPs the system is similar to the UK’s proposed one and that an independent audit has found it is working well.
Greenwich said he will stress that the legislation was intended to regulate a practice that had been going on behind closed doors.
“There are stories, particularly from paramedics and police, of the people with a terminal illness who [kill themselves] because they feel they have no other option or no choice, in horrifying ways,” he said. “We felt we needed to put regulation in that space.”
On Monday, Kim Leadbeater, the Labour MP who is sponsoring the private members’ bill to legalise assisted dying for those with a terminal illness, wrote to MPs saying she was “open to any and all suggestions for how those safeguards can be made even stronger, while never forgetting the lack of clarity, pain and injustice that the law as it currently stands imposes on too many terminally ill people as they approach the end of their life”.
Opponents of assisted dying on the bill’s committee say they are concerned that the balance of evidence being submitted this week is skewed in favour of the change.
Naz Shah, a Labour MP on the committee who voted against the new law, said the committee had no plans to hear evidence from any jurisdictions about the downsides.
“What are the pitfalls that other countries have experienced? If we can’t hear those, that’s not a fair balance,” she said.
Shah also raised concerns that the committee was not hearing enough evidence from mental health experts or those with experience of domestic abuse on the subject of coercion.
Cleverly, the former foreign secretary, is among those seeking to amend the private members’ bill so that those who wish to die can demonstrate it is solely their wish and not for the benefit of others. “The right to die must not become the duty to die,” he told the Times.
Spencer said he hoped to amend the bill to ensure those seeking an assisted death were seen by a psychiatrist and palliative care specialist. But he also said he hoped the bill would be amended to allow cases to come before a tribunal to assess the patient’s capacity.
• This article was amended on 28 January 2025 to remove from the headline an erroneous reference to dementia.
