‘I Should Have Been Allowed To Be With My Husband As He Died’

Today, MPs will debate a bill proposing the legalisation of assisted dying. As Lottie Clarke, 47, watched her husband head to Dignitas, she knew she had to fight for the law to change.


by As told to Zoe Pinks |
Updated on

I wrapped my arms around my husband. ‘Thank you for everything,’ I said, ‘We’re so lucky to have had so many wonderful years together. I promise I’ll take care of the children.’ It was our last night together, and although James could no longer hold me, I clung to him. For weeks, the clock had been ticking towards the date: 9 April. The day James would end his life at Dignitas. Just two and a half years earlier, my vivacious, life-loving, sporty, handsome husband had been diagnosed with motor neurone disease (MND), a degenerative incurable disease.

On the day James was diagnosed, he told me, ‘Lottie, I will fight for you, and I will fight for the kids, but I cannot see this all the way through to the end. I’m going on my terms. I’m going to Dignitas.’ He was only 42. I didn’t want him to give up hope, I wanted him to keep fighting. But over the coming months, the illness took grip. His voice faded, his hands weakened and his job as Head of London Sales for a global estate agency became too much and he had to step back from the role he loved.

The day we said our goodbyes, James gave our children Martha, 16, Ollie, 15, and Matilda, eight, beautiful photo books he’d made them. We looked at them together, tears flowing. And then his lift arrived, and we knew the time had come. It was every bit as hard as I imagined it would be. How do you kiss the man you have adored for 24 years goodbye? The children all hugged him. Matilda clung to his neck. ‘You can’t leave, Daddy,’ she wept. ‘I need you to stay, I want you to be here as I start my new school.’ I prised her hands away from him and watched, heartbroken, as the car pulled out of the driveway.

I desperately wanted to be with James as he ended his life, to hold his hand, to hug him. But having sought legal advice, it quickly became apparent that I couldn’t. In the UK, assisted dying is punishable by up to 14 years’ imprisonment. ‘We cannot risk you being taken away from the children,’ James said. I had no choice but to let him leave for Switzerland without me.

I hope things are about to change, though, because on 29 November, MPs will debate Labour MP Kim Leadbeater’s assisted dying bill in the House of Commons, proposing the legalisation of assisted dying in England and Wales under strict controls. According to the largest ever poll of public opinion conducted by Opinium on behalf of the organisation, Dignity in Dying, 75% of people in Britain support this change in law. Of course, I am one of them – no family should have to go through what we did.

James spent weeks writing cards to each of the children for their birthdays and wedding days and getting our financial affairs in order. He passionately fundraised for the My Name’5 Doddie Foundation, a charity committed to finding a cure for motor neurone disease, in two years raising over £1 million. We also travelled as a family and made as many memories together as we could. Throughout this time, he would drip- feed the idea of Dignitas to me. ‘There are lines in the sand,’ he said. ‘When I can’t walk, when I can’t feed or wash myself, I’ll go to Switzerland.’

As months passed, he hit every one of those painful milestones. And then one day, the words I’d been dreading came. ‘Lottie, I am done, I’ve had enough,’ James said. ‘I’ve booked a date. I have to go now, before I am ready to go, while I can still get to Switzerland.’ For someone who had been so sporty and active, he could no longer tolerate being trapped in the body that was failing him. Now we faced the hardest task of all, breaking the news to the children. We told the big two the truth and, as painful as it was, they understood James’s wishes. To Matilda, then seven, we said, ‘Daddy’s battery’s running out and he needs to go. He’s going to a pretty garden where he can go to sleep.’

Two days after James arrived at Dignitas he FaceTimed me and said, ‘Please don’t let anyone else go through this. Pick up the baton for me and fight for assisted dying to be legal in the UK.’

All I can do is speak from my own experience and say that people should have a choice. If the Bill is passed, I’ll be campaigning and have been asking people to email their MPs. I am aware that many who are against this Bill are concerned about coercive family members pushing relatives towards to an early death for financial gain however as in many other countries where assisted dying is legal, the person would only be able to proceed with this wish if they had been diagnosed with a terminal illness and were within six to 12 months of the end of their life. This would also be ruled over by a doctor and a judge.’

I will never, ever get over the trauma of not being with James in his final moments. If he’d been able to end his life here in the UK, we might have had a few more weeks or even months together. James could have been there to see our daughter Martha turn 16 and sit her GCSEs, he would have enjoyed another cricket season with Ollie, or proudly watched Matilda finishing infant school. I am unbelievably proud of him for choosing to end things on his terms – just as he always did in life. Now I’m doing what I can so no one else has to make that decision.

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