My wife and son were told they were going to die – one chose assisted dying, the other didn’t
When my children and I accompanied my wife to Switzerland for an assisted death, little did we know that just a few short years later, my son would die, aged just 28, of another terminal disease.
My wife Maggie was diagnosed with secondary progressive multiple sclerosis (MS) in 2004, aged 45, although she had been suffering from the symptoms for many years.
As a nurse, Maggie had helped patients dying of this incurable, neurological illness that affects both the brain and spinal cord.
The effects could vary widely from one person to the next, but she knew it could be a protracted, painful process – one she desperately wanted to avoid.
While many people with MS wouldn’t choose an assisted death, for Maggie it was important to have control.
It’s something that played on her mind, over the next few years, as she began to lose her independence. Maggie had to give up her work as a public health specialist and health visitor, and became fearful of what would go wrong next.
By 2010, my wife and partner of 20 years and mother to our two children was in a lot of pain, struggling to control her movements and really finding life hard.
‘I can’t abide this illness’, she told me. It was then that she started seriously to discuss assisted dying, and, although it broke my heart, I told her that as long as she had the support of our son and daughter then I wouldn’t stand in her way.
We all supported her choice and Maggie applied to an assisted dying organisation in Switzerland.
Because of the law surrounding assisted dying in the UK, we were forced to skulk around like a couple of criminals. She couldn’t discuss her wishes with any medical professional as they would have been under a duty to inform the police.
To meet the clinic’s requirements, Maggie had to undergo several psychological assessments, provide proof of both her diagnosis and the severity of her condition, and be interviewed on her own by two doctors and a psychiatrist in the UK, and two more independent doctors in Switzerland.
They were very rigorous in ensuring that the choice was entirely her own and that she met their strict criteria.
When she finally got the approval, it was like a weight had been lifted from her, and the old Maggie came back – with her sharp sense of humour intact. ‘Well, at least we won’t have to argue about the recycling anymore,’ she told me that evening as I stood in the rain wondering if I could get away with putting some food in the ‘landfill only’ bin.
Before we flew to Switzerland, my son Max, 20, was a nursing student at the time and someone at his college had advised him not to push his mother’s wheelchair in the airport for fear of being seen to assist in a suicide, which is punishable by up to 14 years in prison in the UK. He ignored this and did it anyway – wanting to be there for his mum on her final journey.
That weekend in Switzerland, three years after she’d first applied, the final days of Maggie’s life were strangely a happy time. Maggie was relieved that she wasn’t going to be in pain anymore, and she’d no longer have to be afraid about what would happen to her body.
On her last day she was asked many times if she was sure dying was what she wanted. She said ‘yes’ and flicked the lever to administer the medication to end her life. My memories of her final moments are peaceful and positive, although obviously tinged with sadness – very different to my memories of my son’s death.
Five years later, Max was diagnosed with Ewing’s Sarcoma – a soft tissue and bone cancer – aged 25. He told me that, while he respected his mum’s decision to die on her own terms, he wouldn’t make it himself. He wanted to try anything that might allow him to live for as long as possible.
We were all devastated by the diagnosis. He received arduous treatment both here and in the USA, all paid for and organised by the NHS and while this staved off the inevitable for a while, eventually he ran out of options and was given a terminal prognosis in early 2020.
He told his consultant that if assisted dying was available in the UK, he may have eventually taken it – but he didn’t want to travel to Switzerland, potentially cutting weeks or even months off his precious life by having to make the journey while he was still well enough.
Many people also go alone because under the current law anyone who accompanies them could face prosecution.
The care Max received at the hospice was truly outstanding, but I will never forget seeing him unconscious, struggling to breathe, and wondering if he was suffering. Max died about three years after his diagnosis, aged 28. His death was a world away from the dignified and peaceful one his mum had.
The doctor explained that, because Max was in many ways a fit young man, his vital organs were still working at full pelt, trying to keep him alive, and this was why it took so long for him to die. The staff insisted that he wasn’t in distress, but we’ll never truly know.
I felt that I had let him down and was sad that the current law meant he didn’t have the peaceful end that he surely deserved after battling so bravely and uncomplainingly for years.
Though my wife was ultimately able to achieve her final wish, I believe both she and my son were let down by the current law.
Why should she have had to travel hundreds of miles and to die amongst strangers to have the death she wanted?
Why should Max have suffered so much despite the best efforts of truly expert, palliative care professionals?
These experiences are sadly not unique. It’s estimated that one Brit each week travels overseas to die if they have the money, and many more suffer against their wishes at home.
Both Maggie and Max should have had the option to end their lives on their own terms in the comfort of their own bed, as millions of people around the world in countries like New Zealand, Australia and some US states where assisted dying is legalised now can.
Fortunately parliamentarians are waking up to the suffering many of their constituents endure under the current law, and are taking steps towards reform, with Kim Leadbeater MP introducing a private member’s bill to legalise assisted dying in England and Wales.
If you agree that dying people should be given choice at the end of their lives, I urge you to speak up; for Maggie and Max, but more importantly. for you and your family.
This article was originally published 20 January, 2023
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