MYour brother was a sculptor. A vibrant, formidable force. Physically strong and intellectually clear-minded, with a wonderful ability to express his love for art. The fall before he was diagnosed with motor neurone disease, my wife noticed that he looked a little weak. He had difficulty swallowing his food. He had just completed a sculpture of Coleridge for a churchyard in Devon and was otherwise fit and well. But then, while in London, he fell on a child. Nick was shocked so he visited the doctor. In February 2023 I received the call: “Joth, I have bad news.”
The diagnosis came brutally. Nick hated adjusting to a life where he wouldn’t be able to use his hands or voice. “I won’t allow myself to be a trussed up chicken carcass,” he said. “I’m going to end it sooner.”
The process of decline was sharp. This once active man needed help getting out of a wheelchair. He could still use his hands, but the disease reached his throat and became almost impossible to understand. Then he lost control of his bodily functions. Suddenly he was impotent; physically planted. He suffered from painful choking attacks that became more severe, even though doses of morphine helped him relax.
Although he indicated that he wanted to die, he wanted to be where he was; he didn’t want to leave us all. In February this year, the caregiver brought the family together in the early hours of the morning to say goodbye before he died. A few months later we held a memorial service, on a sunny day in his garden. I saw the branches of his old oak floating in the wind; I knew how much he loved that. His spirit was all around us and always will be, I thought. I miss him terribly.
The last hours of Nick’s life may have been peaceful, but at no time did he withdraw from his unwavering commitment to the principle of 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 favor of legal reform.
On the day of the Westminster Hall debate this year, I gave a speech to the crowd outside. Many people were very quiet; very warm. There was also a small group there, dressed all in white and wearing face masks, accusing us of being plotters to commit murder. A 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 acutely aware of the deep feelings that the mere thought of assisted dying evokes, and while I fully understand the fears, I do not think they are justified. I would fight tooth and nail against legislation that grants the right to die to people “just” because they have a debilitating disease and are physically incapacitated. I believe that protection against terminal illness is important. Otherwise we might end up with people suffering from pain, anger, and fear saying, “Okay, I want this to stop.”
I think the same about mental health – it’s very common for there to be an intense period of illness, and that’s when people commit suicide. I think assisted death would be practiced too often by people who could very easily have gotten to the other side as a result of some treatment.
I have less sympathy for people with strong religious beliefs. Unless they are crusaders, I don’t believe that if they think carefully, they would try to impose on others who do not share this belief. As for the slippery slope of coercion: if we always reasoned from the worst case scenario we would have no legislation at all.
I can’t see any of the arguments outweighing the circumstances of being terminally ill and wanting to die for a tortured end that Nick, and so many others, have had to endure.
As told to Harriet Gibson