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‘I want to die while I can still smile’: After his 10-year fight with motor neurone disease, Nigel stoically told his wife he wanted to exercise one last act of control on his life… and go to Dignitas


My husband Nigel, stricken with motor neurone disease (MND), came out of the latest coma he’d fallen into weaker than ever. Like air squeezed from a balloon, the last lingering pockets of strength had deserted him. This man, who, as a scaffolder, once thought nothing of carrying two 13ft wooden boards on a single shoulder, could no longer lift his toothbrush.

Yet I could see at a glance that there had been an astounding transformation in him – the all- consuming anxiety had gone. His little helpers, the sedative tablets he devoured like Smarties to get him through each passing hour, remained untouched. ‘Don’t need them any more,’ he told me, and a slow grin brightened his pallid face.

‘You won the lottery or something?’ I asked. He laughed. ‘Better – I’ve found the cure.’ There was a triumphant look on his face and, in a voice as powerful and unwavering as is possible when defiled by disease he said: ‘I’m going to Dignitas.’

Part of me expected this. ‘Are you sure?’ I asked.

Nigel and Julie Casson pictured on New Year's Eve in Scarborough, 1999

Nigel and Julie Casson pictured on New Year’s Eve in Scarborough, 1999

This man, who, as a scaffolder, once thought nothing of carrying two 13ft wooden boards on a single shoulder, could no longer lift his toothbrush. Pictured, Julie and Nigel pictured together

This man, who, as a scaffolder, once thought nothing of carrying two 13ft wooden boards on a single shoulder, could no longer lift his toothbrush. Pictured, Julie and Nigel pictured together

Of course he was sure. This was not a decision made lightly. I wondered if Nigel had planned this all along. A way to end it. At a time of his choosing.

Not once in our ten-year struggle with death, when at times our defences had been crushed by the merciless cruelty we encountered, had we discussed what happened when we reached the end of this road.

Nigel challenged the devastating effects of this dreadful disease with awe-inspiring guts and gritty humour. He had stuck two fingers up at this invincible enemy. Until, that is, the laughter stopped. In that last pit he fell into, the terrors that assaulted him there, the anguish he endured, had changed him and made him long for the mercy of death.

I clasped his shrunken hand in mine and whispered: ‘Have you had all you can take? Can’t you bear it any more?’ He stuttered: ‘It’s not what I can bear. It’s that I have no control any more. It’s beating me. But I won’t let it. I know it will annihilate me if I don’t stop it. I won’t give it the pleasure. I need to get in first.’

The set of his chin told me he meant it. My husband, the warrior, remained inside that shattered, non-functioning body. Though MND had defeated him in many battles, he would be the ultimate victor in this ruinous war. He was taking control. ‘I must make this choice, Julie,’ he said. ‘While I still can. The disease is changing me. I won’t let it make me disappear.’

Family photo February 2007, shortly after the diagnosis in Scarborough

Family photo February 2007, shortly after the diagnosis in Scarborough

I wondered if Nigel had planned this all along. A way to end it. At a time of his choosing

I wondered if Nigel had planned this all along. A way to end it. At a time of his choosing

I knew what he meant. MND’s supremacy over his body was already accomplished. That battle was over. The disease’s campaign to deprive him of his resolve and sense of self had begun. He was right. That must not be allowed to happen.

‘I could be buried alive for years, unable to drag a scream from my throat,’ he said, and the image of Nigel trapped inside a broken body, with a mind astute and attuned to his surroundings, forced to endure unimaginable torture, unable to express his wishes, share his thoughts or cry for help, overwhelmed me. Should he be condemned to a living hell, where he longed for each new day to be his last? Could I stand by as his spirit was sucked out of him? Must he suffer month after month, year after year, desperate for the moment his breathing stopped until, finally, he was granted the release only death provides?

‘I want to die while I’m happy,’ he said. ‘While I can still smile.’ In secret, making sure his carers didn’t know, we researched the Dignitas website, read articles and watched videos on YouTube of people who had made the journey.

We discovered that if you were applying to access its service of accompanied suicide, there were several prerequisites – including the need for unassailable judgment and sufficient physical mobility to administer the fatal drug yourself. ‘I’ll take it through my gastric tube,’ said Nigel. He’d had it inserted in case he lost the ability to swallow. ‘I knew it would come in handy,’ he said.

Being p****d off isn’t good enough, I told him. ‘You must suffer from one or more of the following: a terminal illness; unendurable, incapacitating disability; or unbearable, uncontrollable pain.

‘You have to write a letter giving the reason you’re requesting accompanied suicide, your physical condition and how it affects you. They also need a bucket-load of medical reports, full case history from diagnosis, the treatment you’ve received, medication, prognosis and so on. Old reports and bang-up-to-date ones.’

We had all that – piles of it – in a red box file, thank goodness.

‘They also require a biography describing your childhood, school life, family circumstances and the primary events in your life. And details of who supports your request for accompanied suicide. And who will be travelling with you to Switzerland.’

UK law as it stands means that any person helping another commit suicide faces up to 14 years in prison

UK law as it stands means that any person helping another commit suicide faces up to 14 years in prison

‘I take it you are?’ Nigel asked. ‘Naturally,’ I replied.

When we told the children, they wanted to be there, too. They’d been half expecting it. Our son Craig asked: ‘But what about the police? Assisted suicide is illegal in the UK. Don’t they stop people from going to Dignitas?’

‘Maybe,’ said Nigel, ‘if they know about it. That’s why we’re only telling close family and a couple of trusted friends.’

I butted in: ‘At risk of appearing pedantic, you’re not planning assisted suicide. It’s accompanied suicide. Assisted is when a doctor or somebody else gives you the lethal drug. Accompanied is when you do it yourself and people are with you. Massively different.’

But this was undoubtedly tricky territory. UK law as it stands means that any person helping another commit suicide faces up to 14 years in prison. This may explain why Britons who travel to Dignitas to die – an astonishing one every eight days – fail to announce their intentions in advance.

It seems that dying a horrible, lingering, painful death isn’t enough for this country. You have to undertake the gruelling journey to Switzerland, shoulder the not- insignificant expense, anywhere between £6,500 to £15,000, plus suffer the profound anxiety of what may happen to accompanying family members.

This all forces plans to be shrouded in secrecy and innocent people to behave like criminals.

‘The law just makes you sick, doesn’t it?’ I said, to Ellie, our daughter. ‘It’s insane. It has to change one day. Not in time for Dad, though.’

It seems that dying a horrible, lingering, painful death isn't enough for this country. You have to undertake the gruelling journey to Switzerland

It seems that dying a horrible, lingering, painful death isn’t enough for this country. You have to undertake the gruelling journey to Switzerland

For Swiss residents, this must be intensely liberating, as Dignitas comes to them at home

For Swiss residents, this must be intensely liberating, as Dignitas comes to them at home

Nigel composed his letter to Dignitas. It began: ‘I am writing to make a request for an accompanied suicide. I was diagnosed with MND in 2007 and have suffered a slow and continuous deterioration.’

It concluded: ‘I have had a wonderful life but I have now reached the point where my condition is unendurable. I am not afraid of dying. I would welcome it. I would like to exercise one final act of control in my life and die while I am still smiling.’

The reply from Zurich had a caveat – a psychiatric statement was needed to ensure he was of sound mind and not influenced by anxiety or the strong drugs he was on. On learning Nigel’s intentions, the first two psychiatrists I contacted flatly refused to speak to him.

I was furious. How dare they make any sort of judgment without even seeing him.

Could this signal the end of his hopes for Dignitas? Would the lack of a report condemn him to suffer a wretched, intolerable existence?

But a third psychiatrist agreed to see him and Nigel was on top form when she came round: cheerful, amusing and displaying zero anxiety. He emphasised how he was determined to die while he was still happy and smiling.

She told him: ‘You’re able to discuss your intention for accompanied suicide in a practical and pragmatic manner. It is clear to me you understand the outcome of such action and your capacity to make decisions is not influenced by medication or anxiety.’

Her approval was pinged off to Dignitas, from whom came confirmation that his request was completed. Once our payment was received, his case would be passed to one of their doctors in Zurich for consideration.

For a fortnight we waited in suspense before, on October 14, 2016, a bulging A4 envelope thudded on to the mat. Oh God, it’s here – this was it, Nigel’s destiny. I was apprehensive of what we’d find inside. Would my husband die soon, without anxiety and pain, or suffer unspeakable torture for year after agonising year until he died, a shrivelled, tormented shell of the man he used to be?

I opened it and read: ‘Please be advised that a medical doctor co-operating with us considers an accompanied suicide to be justified and thus has just given his consent to write the prescription for you. You now have the provisional green light for an accompanied suicide in Switzerland. However, the definite decision will only be taken after two personal consultations.’

‘It’s happening,’ I whispered. ‘It’s really happening.’ ‘How perfect is that?’ Nigel said, his face lit by a supernova of joy.

We read on. ‘By experience we know that the sole fact of being given the provisional green light might improve your condition, rendering you possibly able to further endure life and even to enjoy it.’

According to Dignitas, knowing there is an emergency exit from this world, to pass through at a time of your choosing, has both a life-prolonging and life-enhancing effect. Only a few people granted the provisional green light take up the option.

Some ‘let go’ and die peacefully soon afterwards, while others live many more months, years in some cases, with a new and positive attitude, able to bear the unbearable for longer perhaps, as they are in control of their ultimate demise.

For Swiss residents, this must be intensely liberating, as Dignitas comes to them at home. Having made all the preparations, they relax and draw whatever pleasure is possible from each new day, knowing, should things worsen, their release is on hand.

But the green light would not prolong Nigel’s life, would it? His dying day must be determined while he was still able to make the journey to Switzerland – difficult for someone wheelchair-bound, weak and incontinent. His mood, however, was already vastly improved.

He was like a kid relishing the contents of a glowing school report as he signed the authorisation for Dignitas to store the lethal medication in a safe place, until the agreed time of his voluntary death.

Nigel's decision to go to Dignitas to end his life freed him from jail. The provisional green light had given him what they said it would – the ability to enjoy the remainder of his life

Nigel’s decision to go to Dignitas to end his life freed him from jail. The provisional green light had given him what they said it would – the ability to enjoy the remainder of his life

Once again, laughter echoed throughout our home and Nigel's life was transformed

Once again, laughter echoed throughout our home and Nigel’s life was transformed

His hand trembled as he gripped his pen, but there was no hesitation as he scratched an astonishingly legible signature on the instructions regarding medical intervention during the dying phase. There must be no intervention, regardless of how long it took for him to die.

We reached the form requiring Nigel’s instructions on the funeral. Repatriation of the body or cremation and return of the urn? I favoured repatriation, Nigel cremation. Yes, I knew it was his death, his decision. But I was his wife, and the idea of walking away and leaving him behind in Switzerland ripped me apart.

‘I’ll email Dignitas,’ he said. A reply bounced back within the hour. ‘We would not advise a repatriation of the body. This would certainly trigger a police investigation, and would be a hassle for your family.’ Nigel ticked the box for cremation and signed the form.

Nigel’s decision to go to Dignitas to end his life freed him from jail. The provisional green light had given him what they said it would – the ability to enjoy the remainder of his life. Once again, laughter echoed throughout our home and Nigel’s life was transformed.

The team of carers, still deliberately kept unaware of his plans, were astonished at the change in him. He enjoyed his days instead of enduring them. His appetite stormed back: after years of soft food he now hankered after fillet steak. He loved a beer and the occasional whisky and enjoyed spending time with family.

Since the day he made his decision, he took not one single painkiller. No longer, when he went to bed, did he need to swallow three large gulps of morphine.

But he still had MND. And he was growing weaker.

There were more checks from Dignitas, seeking confirmation that he still wished to proceed. Then there was the question of his ashes. Apparently, our illustrious Royal Mail no longer allows urns to be forwarded by post. We were left with two options: enlist the services of a British undertaker to arrange airfreight to the UK or collect the urn from the crematorium in Zurich in person.

Nigel wasn’t bothered: ‘Leave me there, for all I care. Chuck me in a wheelie bin.’ He thought the cost exorbitant, but I wasn’t standing for that. For me, abandoning his ashes was not an option – we’d have them flown home.

The next pressing item on Nigel’s dying agenda was the date.

‘I’m thinking back end of April,’ he said. I grabbed the calendar and we pored over the dates as though planning a picnic in the park, before settling on the 25th or 26th, depending on the further medical checks he’d have to go through at Dignitas before he could kill himself.

I stared at the calendar until the numbers blurred to a splodge. Nigel trapped a tear as it trickled down my cheek. ‘Julie,’ he murmured. ‘Come on now.’

Death lay suspended in the air. I could smell it. But it wasn’t its ugly face. No longer the repulsive phantom, this presence bore the promise of peace. This death was his friend, his liberator. Each day Nigel stepped away from life and drew ever closer to death.

Olivia from the hospice made her final call, concerned that he was not well enough to make the journey to Switzerland. ‘I’m not worried,’ said Nigel. ‘I’ll be fine.’

‘There is another way,’ she ventured. ‘Your condition has deteriorated significantly. Should you get an infection, we’re not obliged to treat it. We don’t need to prolong your life. We can ensure you are free of pain. And I suspect, if left alone, an infection would kill you.’

Nigel studied her face. Then mine. I held my breath. Could he change his mind?

Then he said to her: ‘Got one in your bag? An infection?’

‘No,’ she said.

‘Then I’m going to Dignitas.’

He agreed that a natural death would be better. ‘But who knows when a nice little infection will come along and kill me? Won’t risk the wait. I want to die happy and smiling, while I still can. Not when this disease decides my time is up.’

I cradled him close to my chest and kissed his head. He wrapped his arms around my waist, and we held each other as we yearned for all we had lost. ‘Are you determined to go through with this?’ I asked, knowing the answer.

‘Definitely.’

He pulled away from me and eyes full of love sought mine. ‘You are with me on this?’ he asked. ‘Yes. I am,’ I replied, ‘but I’m going to lose you. I’m not ready to live without you.’

He stroked my hair. ‘It’s the best thing for me,’ he said, then added: ‘You’re the only one who could talk me out of it.’

I took a second to absorb his words. I wasn’t expecting him to say that. Should I persuade him to change his mind? Beg him to stay with us a bit longer, in the hope of a natural death? Would it be fair to ask him to do that?

I considered how he had dealt with MND. Not one complaint in ten long years. Not one moment’s self-pity. He had scoffed at this vile disease and fought every battle with unparalleled courage. Then, with the certain knowledge MND would crush his spirit as mercilessly as it had violated his body, he called a halt. He denied it victory.

But here he was risking me changing his mind.

And if I did ask him not to go yet but to hang on, would it be for him or me? Was I willing to condemn him to the torture of a living death? Could I allow him to shrivel as his soul was snatched from him? Could I stand by while the man I adored was plagued by eternal suffering?

Yet here he was saying that, for me, he was willing to endure all that.

The noblest sacrifice any of us could ever face is to give one’s life for another. Nigel was prepared to go one step further: to sacrifice his death, for my sake. ‘Will you try to talk me out of it?’ he asked.

I found the resolve inside me, though my heart ached. ‘No, my darling,’ I replied, ‘I won’t talk you out of it. I love you too much.’

© Julie Casson, 2024

Adapted from Die Smiling by Julie Casson (Canbury Press, £13.99). To order a copy for £12.59 (offer valid to March 16, 2024; UK p&p free on orders over £25) go to mailshop.co.uk/books or call 020 3176 2937.



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