'I don't want him going abroad to die' says mum of son's assisted dying wish

The mother of a terminally ill teenager says she supports an assisted dying law in the UK to avoid him being forced to leave home and end his life abroad.

Shelley Herniman had always been firmly against 19-year-old Noah's wish for an assisted death after he was diagnosed with an inoperable brain tumour, but seeing him suffer over more than a year of chemotherapy has changed her mind.

"I brought him into the world and I don't want to take him out of it - but I sure as hell don't want to see him suffer," she said.

Politicians in Wales will vote on Tuesday whether they agree the country should have powers to set up assisted dying services on the NHS if a landmark law passes in Westminster.

Assisted dying was rejected as a principle when it was last voted on by the Senedd in October 2024 - with nine of the Welsh parliament's politicians abstaining.

But should the UK Parliament legislation pass, it would become legal in both England and Wales regardless of how the Senedd votes on Tuesday because changes to suicide law are not devolved.

Shelley, who lives with Noah and his father in Chepstow, said she'd had conversations with her son that "no parent should have" - and even though he's a young adult, she'd never want him to have to end his life abroad.

After Noah was diagnosed with an inoperable brain tumour during the Covid pandemic he underwent 74 weeks of chemotherapy.

The treatment took its toll, and by the age of 15 he weighed 15kg (33lbs) and needed feeding tubes and a wheelchair.

He was expected to have a further 80 weeks of treatment but "his body wouldn't allow it", his mother said.

Conversations around the possibility of going abroad to end his life had always been shut down by her in the first few years following his diagnosis.

But having discussed it at length, researched and explored all the possible options and seen first hand the extent of suffering he's endured, Shelley said her view on assisted dying has changed.

"I wouldn't want him to suffer the way I know others have suffered, and I sure as hell wouldn't want him to go to a foreign country on his own and do it," she said.

"Have I got a plan? Hopefully, I'll never have to [have one]. But the reality is if Noah was at that point and there was nothing that could be done and there were options out there, then I wouldn't say no.

"That's the honest answer. Would I like to see it [assisted dying] in our own country? Yes."

"I've seen him when it's bad," she added. "There was one time I didn't think he was coming home because he was that bad and the screaming because of the pain he's been in.

"The chemo affected him so bad that his kidneys and liver were struggling, and that's just on treatment."

She said the progression of Noah's illness means his body could start shutting down, and he'd likely lose the ability to do things independently and not be able to speak.

"That's not dignified," she added.

Noah said the idea of death "terrifies" him and he remains optimistic about his future, but he believes in having a fully informed choice on the possibility of an assisted death in the UK for people like him.

He said when the time comes he wants to be able to "die with dignity".

Despite making plans to study at university and become an actor, Noah said his slow growing brain tumour will eventually kill him.

"One day the tumour is going to grow to a point where it's the beginning of the end and if it gets to that point ever, I don't want to go for a slow agonising death where I can't do anything myself," he said.

"I want to be able to have a quick and dignified death. I don't want it hanging over my head for months being scared and terrified."

Noah said he and his family want more politicians to understand their viewpoint.

It's an issue which continues to divide opinion and many people working within the health and care sector remain concerned about the proposed legislation.

Dr Mark Taubert, a palliative care consultant, said a lot of clinicians "are very nervous about this", adding that regardless where some stand on assisted dying "a lot of people think this Bill is a car crash waiting to happen".

"There are very little safeguards in the Bill and an understanding of the state of our current health system," he said.

Dr Taubert claimed politicians viewed the proposed legislation in the context of a "perfect" health system.

"The reality I and others see day to day is far removed from perfection," he said.

"This is a health system where we are still providing corridor care and we have a social care system which is often failing patients."

He added that Senedd politicians need to think about "where accountability should lie" when it comes to any possible future legislation on assisted dying before they decide to agree to reject the legislative consent motion.

The outcome of Tuesday's vote is not certain. Although Plaid Cymru is yet to confirm if its politicians will be told to vote a certain way, most Members of the Senedd (MSs) including from Labour and the Conservatives are expected to be given a free vote.

A lot of issues are still to be decided in Westminster. The bill is currently in the House of Lords, where supporters have raised concerns that the vast volume of amendments could means the legislation does not pass.

UK Parliament could ignore the Senedd vote, but the backers of the legislation have said they would change the bill to take out parts relating to Wales should MSs vote against it.

If the Senedd refuses to give consent to the bill in the UK Parliament, it could mean that services are still available in Wales but not on the NHS.

Additional reporting by Jordan Davies