My mum is dying a slow, horrible, painful death but I STILL can’t support right-to-die bill – here’s why

I AM watching my mum die. Slowly. Underneath the ghastly shroud of the last stages of Alzheimer’s disease, my frail, fierce mother’s Irish blue eyes flash desperately, trying to communicate with me now that her voice and most of her body has failed. This is a horrible death. I feel Mum would not want to live through this indignity. I suspect she would have chosen to end her life years ago had she known she was going to be diagnosed with dementia back in 2020.

Despite this very real example of how prolonged and painful the end can be, I cannot support the assisted dying bill being championed in Parliament by MP Kim Leadbeater. The reason? I don’t believe for a minute that the safeguards Leadbeater has suggested, which are changing by the day, will protect vulnerable people. I don’t believe they will spot coercion or be nuanced enough to see why the elderly or people reliant on carers might feel obliged to choose assisted dying because they feel a burden.

How do I know? Because as well as looking after my mum, I have a disabled daughter, now 23. The state machinery that we are expecting to provide safeguards in the event of this bill becoming law has failed my daughter over the years. I felt this even when Leadbeater promised High Court judges would oversee the process. Then between Monday night and Tuesday morning this week, she backtracked. Judges are too busy.

Instead, she announced we will have a panel consisting of a lawyer, a social worker and a psychiatrist. This is laughable; it is creating society-transforming law with gaffer tape and string. It is not the careful, diligent scrutiny that such a potentially powerful act deserves. It is definitely not what MPs voted for in the first reading of the bill in the Commons. As well as making vital legal protections up on the hoof, the existence and make up of this expert panel concerns me.

Over my daughter’s lifetime I have come across some very good social workers, but also some really poor ones — enough poor ones, in fact, to believe some are not up to the role. Similarly, much of my daughter’s education, health and social care provision is decided by an “expert panel”. Professional judgment has consistently failed her and I don’t trust the system to protect and respect lives like hers.

It was just such a panel that decided recently that she did not need one-to-one support, despite the fact that she has a learning age of two and cannot walk. Professional judgment has consistently failed her and I don’t trust the system to protect and respect lives like hers. It was only five years ago, during the pandemic, that “do not resuscitate” orders were placed on patients with learning disabilities without any consultation with the individuals or their families.

Where were the safeguards then?. In the six months the Government has been in power, it has done very little to make life better for disabled people or to show they are valued. By giving over so much time to the Terminally Ill Adults (End Of Life) Bill, it gives the message that it prioritises the right to die over the right to live. How much more constructive it would be to invest in palliative care and respite, significantly improve social care, and support disabled people into work.

Is it a coincidence that the Health and Social Care Secretary Wes Streeting has not backed the bill?. I once interviewed brain surgeon Henry Marsh. He is a brilliant, passionate advocate of assisted dying. He has more interest in this subject than most because he has advanced prostate cancer. He argues the humane case for choice as forensically as he would slice into a cranium, but he still couldn’t convince me mistakes would not be made.

The case of Peter Sefton-Williams, who was misdiagnosed with Motor Neurone Disease and given as little as six months to live, should give MPs not just pause for thought, but a massive juggernaut to back out of this legal cul-de-sac. To avoid unnecessary suffering, the former journalist completed the paperwork to go to Dignitas in Switzerland for an assisted death, but then changed his mind. Four years later his doctors realised he had been falsely diagnosed and that he had multifocal motor neuropathy, a minor and definitely not fatal condition.

Mr Sefton-Williams wasn’t called as a witness before the committee scrutinising the bill. Notably absent was anyone from a country where right to die exists who is concerned about how tight laws have been loosened. There was no one giving evidence about the malevolence of coercive control on women and young girls. Only grudgingly was a witness allowed to give evidence on behalf of the more than 20 per cent of the population who are disabled.