It cost £ 13,000 to help my terminally ill husband die on his own terms

Sara and Keith on the beach

As his condition worsened, it became difficult for him to cope with complicated tasks (Image: Included)

When I saw The Splits Lenny reveal that she was arranging an assisted death in Switzerland, I felt an overwhelming sympathy with her character.

During the latest episode of the BBC One drama last night, we learned – after weeks of secrecy and cryptic mentions of Zurich – that she had been diagnosed with the incurable and ultimately fatal disease, motor neurone disease.

For me, it was a matter of art that mimicked life. Keith, my husband of 31 years, died in Dignitas five years ago, aged 59 years.

He was diagnosed in 2009 with a neurodegenerative condition – Huntington’s, which is a rare disease that causes the progressive breakdown of nerve cells in the brain.

As his condition worsened, it became difficult for him to cope with complicated tasks such as changing plugs, he lost things, was suffocated by his food and fell over regularly. He said he felt he ‘lost control of his life’.

Like Lenny, he was also determined to avoid a prolonged, traumatic death, after seeing close family members endure the same thing.

He had also wanted control of a situation where it had been cruelly removed from him. And also he was denied the opportunity he wanted at home by the cruel laws of this country, instead forced to look to Switzerland for the compassion and choice that should have been available here.

Sara and Keith on their wedding day

The thought of losing Keith was heartbreaking (Image: Included)

Needless to say, there are also huge differences between our story and this sensational prime-time drama.

Keith was a Berkshire veteran, not a hot-shot London surgeon, to begin with. Lenny has gone to great lengths to keep his plans secret from everyone – even in an attempt to divorce her husband, presumably in an attempt to protect him emotionally and legally – whereas Keith had my full knowledge and support once he had taken his decision.

But Lenny knows that if her husband was complicit in the decision, he could be seen as complicit in her death, and currently could face up to 14 years in prison in England, Wales and Northern Ireland.

Keith was very worried about whether our children and I would get in trouble when we returned to the UK, which gave him extra worry that he did not need. Luckily there was never a knock on the door and we were never questioned by the police.

The thought of losing Keith was heartbreaking, of course, but his illness had already removed the possibility that we were living together in old age or so our children had their own family. What was devastating was how far Keith had to go to simply die with dignity.

There are a lot of documents required by Dignitas to approve the request for an assisted death there, and the thought of how we could get these together without letting the cat out of the bag with what Keith had planned was very daunting.

When euthanasia was illegal in the UK, he faced the possibility of suffering against his wishes, just as his father, sister and brother had done from the same disease.

In early 2017, he began to fall over and be suffocated by his food, a sign that the deterioration was gaining momentum and a call for him to start planning the end. He raised the idea of ​​Dignitas with me, and at first I tried to expose him to the idea.

Then he tried to take his own life. It was a wake-up call for all of us.

Last week, new data from the Office for National Statistics indicated that people with fatal diseases are twice as likely to take their own lives than the general population, and Dignity in Dying has estimated that up to 650 do so each year, with 10 times as many attempts.

I realized that if I wanted to protect Keith, I had to support him in pursuing a safe, legal alternative abroad.

All in all, the Dignitas process cost us £ 13,000 – a luxury we knew many families would not want.

We planned it in secret and lied to Keith’s doctors if they reported us and wasted his chance to die with dignity. We kept it from friends, Keith denied the opportunity to say goodbye and even struggled to tell it to his brother, a police officer, in case it incriminated him.

Keith was eventually able to die peacefully on his own terms, with his family around him. But he should not have had to travel hundreds of miles to do so at an anonymous foreign clinic. He could even still be alive today if the opportunity had been available in this country in his last months.

Keith smiles

It gave Keith the peace of mind he needed (Image: Included)

Like so many others, he felt he had to act early if his health suddenly deteriorated and he was unable to cope with the journey. It seems that Lenny in The Split might have to consider the same kind of ‘preventive attack’ as Hannah put it.

At its core, The Split is not just about divorce, but about life not going to plan. It’s about navigating turns, coming to terms with what we can’t control, and figuring out what we can.

If you are exposed to the blow of a terminal diagnosis, it can feel like all control has been cruelly taken away from you. But euthanasia can give it back.

It gave Keith the peace of mind he needed; it gave him a good death, but also made it possible for him to have a better life when he died. Is not that what we all want for ourselves and our loved ones?

How can we justify telling the terminally ill that they have to suffer unbearably for the last months, weeks or hours of their lives when an assisted death is a much more compassionate alternative?

If you’ve been touched by Lenny’s story, know that for every fictional portrayal, there are countless families like mine who have experienced these horrors on their own.

Help us secure a debate on euthanasia in Parliament – add your name to the 72,000 and count who agrees that it’s time for a change.

Do you have a story you would like to share? Contact us by sending an email to jess.austin@metro.co.uk.

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