Seeing his brother’s distressing deterioration has made the broadcaster even more certain that legal reform is needed
First publish in The Guardian Sat 15 Jun 2024
My brother was a sculptor. A vibrant, formidable force. Physically strong and intellectually clear-minded, with a wonderful capacity to express his love of art. The autumn before he was diagnosed with motor neurone disease, my wife noticed he looked a bit frail. He had trouble swallowing his food. He had just completed a sculpture of Coleridge for a churchyard in Devon and was otherwise fit and well. But then he fell over, on to a child while in London. Nick had been mortified, so he visited the GP. In February 2023 I received the call: “Joth, I’ve got some bad news.”
The diagnosis came brutally. It horrified Nick to adjust to a life in which he would not be able to use his hands or voice. “I’m not going to allow myself to be a trussed-up chicken carcass,” he said. “I’m going to bring an end to it before that.”
The process of deterioration was sharp. This once active man was needing help to get out of a wheelchair. He could still use his hands but the disease went to his throat and he became almost impossible to understand. Then he lost control of his bodily functions. Suddenly he was impotent; vegetablised physically. He had distressing choking fits that became more intense, even if doses of morphine helped him to relax.
While he indicated he wanted to die, he so loved being where he was; he didn’t want to leave us all. In February this year, in the early hours of the morning, the carer got the family together to say goodbye before he died. We held a memorial service a few months later, on a sunny day in his garden. I watched the branches of his old oak tree float in the breeze; I knew how much he loved that. His spirit was all around us and it always will be, I thought. I miss him dreadfully.
The final hours of Nick’s life may have been peaceful, but never at any point did he withdraw his unwavering commitment to the principle of having the right to die. It was the right that mattered, not the decision that followed. Nick’s experience has reinforced my own long-held views in favour of legal reform.
On the day of the debate in Westminster Hall this year, I gave an address to the crowd outside. A lot of people were very quiet; very warm. There was a small group there, too, dressed all in white and in face masks, who were accusing us of being conspirators to murder. One woman came up to me and said, “This is not the way to end your career – as a member of a death cult.”
I am well aware of the deep feelings generated by the very thought of assisted dying, and while I totally understand the fears, I don’t think they’re valid. I would fight tooth and nail against legislation that authorised the right to die for people “merely” because they have a debilitating disease, who are incapacitated physically. I believe the safeguard of being terminally ill is an important one. Otherwise, we might get people who have a spasm of pain and anger and fear, and say, “Right, I want this to end.”
I feel the same about mental health – it is very common that there is an intense period of illness, and that is when people kill themselves. I think assisted death would be too often exercised by people who could very easily have come through the other side as a result of treatment of one kind or another.
I am less sympathetic to those who have a strong religious conviction. Unless they are crusaders, I do not believe if they thought carefully they would seek to impose on others who don’t share that conviction. As for the slippery slope of coercion, if we were to always argue from the worst case scenario, we would never have any legislation at all.
I can see none of the arguments outweighing the circumstances of being terminally ill and wanting to die before a tortured end that Nick, and so many others, have endured.
As told to Harriet Gibsone