The last time she saw her father, Sarah Crampton knew he was dying.
Once a man with a vibrant and fulfilling life, as a former chief inspector for the Hertfordshire Police, Mark had his fair share of stories he’d acquired working in such an intense role. He’d even travelled and worked in Bermuda for seven years, working for the government out there.
‘He was a very proud, masculine man,’ Sarah tells Metro.co.uk as she remembers her dad. ‘He was very wise – and unique in how he tackled things. So many people who met him said they’d never known anyone quite like him before.’
However, this strong, determined person who she loved so dearly was nowhere to be seen when Sarah last saw Mark in 2020.
Having been diagnosed with chronic obstructive pulmonary disease, a terminal lung condition, five years earlier, his decline had been rapid and steep.
Sarah describes how her father used to be a broad, tall figure at 6 ft 2, but at their last meeting, he weighed just 8st 7lbs, his clothes flapping loosely from his sallow body. His eyes had sunken into his skull. He wasn’t eating, and his teeth had turned black.
Her bold and brilliant dad, who had been described by friends as a ‘force of nature’, was fading away.
‘His quality of life was so poor,’ Sarah explains. ‘He was on so much medication for his COPD, as well as painkillers, sleeping pills and relaxants for his sciatica (severe pain of a nerve) that he could have opened a pharmacy.
‘Sometimes, Dad would cough until he’d pass out. He had round the clock care and his carers would come in and see him knocked out on the floor, covered in blood.’
Just days after she saw her father, Sarah got a knock on the door from two policemen. Mark’s body was found on train tracks in the small hours of the morning. He was 62 years old.
‘My dad was so intelligent,’ she says quietly. ‘He wanted to find a way where he knew he was definitely going to die. He’d left us all notes explaining he had done this because the death would be quick and painless, and so we didn’t have to find him.’
However, knowing how her dad spent the last few hours of his life has left Sarah deeply traumatised.
‘Because we don’t have assisted dying laws in this country, my dad had to die alone, on a train track at 2am in the morning,’ she says. ‘I have PTSD from that.
‘I still have gruesome images in my mind. If we had the choice of assisted dying, he would have taken it, 100%. That’s what horrifies me the most – my dad died alone, needlessly, in such a barbaric way.’
The choice to safely end your life in medical settings is something that is available for 200 million people across the world, with laws in place in 10 US states, Australia and New Zealand – but assisted dying in the UK is still completely illegal, carrying a maximum penalty of 14 years in prison.
Progress is being made – but at a frustratingly slow pace.
Research conducted by Dignity in Dying found 84% of the electorate were in favour of introducing laws on assisted dying, and a new bill on the matter passed the second reading at the House of Lords without opposition. However, the process was cut short when parliament was prorogued in April this year, leaving thousands of people across the country who are terminally ill with no safe or legal way to die on their own terms.
Instead, those who are desperate to quell their suffering are often forced to end their lives in the most horrific ways: Dignity in Dying estimates around 650 terminally ill people die by suicide every year.
It was particularly painful for Sarah to witness her dad deteriorate. The pair shared a close relationship, and it had a horrific impact on her mental health as she watched Mark shrink into himself.
‘I couldn’t help him. I couldn’t improve his lung capacity,’ she recalls. ‘I became extremely depressed. I was suicidal myself – that’s how much it began to affect me.’
Sarah knows Mark would have been in favour of assisted dying – the pair frequently discussed heading to Dignitas – the assisted suicide clinic – in Switzerland, but it simply wasn’t an option. Mark’s back problems meant he couldn’t travel long distances in cars, while his lungs couldn’t take the pressure of air travel.
Even when Dignitas is an option for the terminally ill, it is by no means a simple solution, as Carmen Alkalai discovered back in 2015 when her mother, Sandra, was diagnosed with motor neurone disease.
After Sandra, or Sandy, as she liked to be called, received her diagnosis, her decline was rapid. It prompted the family to moved fast to ensure she could be considered for Dignitas.
‘She was a glamorous, sexy woman,’ Carmen, 49, recalls. ‘She was fit and healthy, and creative and artistic.
‘When Mum got the diagnosis, she was effectively told she had about six months as her body would just shut down. She would be left with a fully functioning brain, but in a body where she couldn’t breathe for herself, couldn’t wash herself. She didn’t want the indignity of that – straight away, my mother said she wanted to go to Dignitas.’
It wasn’t without obstacles. As Sandy’s body started to fail her – being unable to really move or even hold a pen to write, it was up to Carmen to fill out forms and liaise with Dignitas about making sure Sandy was a suitable patient.
Two doctors had to confirm she was terminally ill with no quality of life. Carmen also had to produce forms such as Sandy’s dental records, and even the death certificate of Sandy’s late husband, who had passed when Carmen was just a child.
Although Sandy received palliative care, she had been left disappointed at how little mental health support she received.
‘Both myself and my sister, Victoria, were offered counselling, but she wasn’t.’ Carmen says. ‘She said she was ‘the Invisible Woman’ as so little was there for her.
‘By this point, she couldn’t even swallow. I had to perform the Heimlich manoeuvre on her several times a day so she didn’t choke, while she sobbed. We had to put gelatine in her water, just so she could drink.’
After months of discussion, Dignitas offered ‘the green light’; if Sandy still wanted to end her life, she could (but was under no obligation to) travel to Switzerland. Sandy agreed immediately and was accompanied by her two daughters in February 2016, after an emotional farewell to her family – not all of which agreed with Sandy’s decision.
Carmen can still recall their first impressions of the clinic once they’ve arrived in Switzerland, describing it as a small, blue building in an industrial estate that reminded her of a shipping container.
On arrival, an assistant greeted Sandy and expressed surprise at seeing she had people with her: most people go to Dignitas alone, they were told.
We were so terrified that we could end up in prison, we printed out tourist guidebooks so it looked as if we were just on holiday
Sandy’s death, Carmen says, was somewhat peaceful. After they all hugged goodbye, she was put into a bed and wired up to a drip that released barbiturate.
Her daughters held her hands after she pressed the button which released the barbiturate into her system and she slowly drifted off. Within minutes, Sandy was gone.
Carmen says she has no regrets in helping her mother, but doesn’t deny she struggled in the immediate aftermath, being diagnosed with depression a year after.
‘The most awful part was my mum was in a foreign place, a foreign county, a foreign bed, and then we had to leave her,’ she explains. ‘We had no support from anyone. We couldn’t talk about it to anyone back in the UK because it’s illegal and we were afraid of being arrested. We couldn’t even discuss it with people at the hospice because my mum didn’t want to be stopped.
‘We were so terrified that we could end up in prison that we printed out tourist guidebooks, so it looked as if we were just on holiday to Switzerland. It was ridiculous. Thankfully, we faced no formal charges.’
Having reached out to Dignity in Dying shortly before the trip for assistance, Carmen managed to speak to others who had been in a similar situation and came to terms with the events around her mother’s death. Since then, it has only galvanised her further into fighting for assisted dying laws in the UK.
‘Dignitas just isn’t an option for everyone,’ Carmen says. ‘It cost around £10-£12,000 in total for my mum, including flights and hotels. So many people can’t afford that.
‘We shouldn’t have to go abroad to do this. I should have been able to spend the last few months with my mum spending time with her, not filling out forms. She should have been able to have an open and honest discussion with someone so she could have made an informed decision, where she could die at home, in her own bed, with all her family around her.’
Assisted dying laws aren’t without contention. Those who have argued against them fear they may be manipulated for ill means or private gain, and that it could lead to a slippery slope which could result in the less abled being euthanised against their will.
However, Carmen and Sarah have both argued passionately against these points.
‘The bill was only for people who were terminal, sound of mind and with less than six months to live,’ Carmen explains. ‘You needed to have two doctors agree to this, and it had to be ruled as acceptable in front of a judge. It would be extremely thorough.
‘I tell people who don’t agree with assisted dying they are absolutely entitled to make that decision for themselves but not for others. This is about choice, not forcing anybody to do anything.
‘You often hear people say: “We put dogs down when they’re in pain.” Well, this isn’t about dogs. This is a human being who can speak and can tell you exactly what they want. We don’t have the right to make decisions for them.’
While the initial bill has fallen by the wayside for England and Wales for now, there are threads of hope as MPs from all parties expressed support for an inquiry on assisted dying.
Meanwhile, in September, Liam McArthur, MSP for Orkney, lodged a final proposal in the Scottish Parliament.
However, for David Minns, he knows any change in the law will come too late for him.
He watched his daughter, Katie, painfully die from a terminal sarcoma when she was just 46. ‘I contemplated killing Katie, and I was horrified,’ he admits. ‘I was horrified to be living in a society that put me in a situation where I wanted to end my own daughter’s life to stop her suffering.
‘I thought…this is all wrong. This isn’t the way it should be.’
A cruel twist of fate has also seen David diagnosed with terminal multiple myeloma, blood cancer. It has caused a painful condition called amyloidosis, which sees protein growing in his vital organs and slowly shutting them down. The illness has left him immobile and spending most of his time in his summer house as his wife cares for him.
After nearly two and a half years of chemo to prevent deterioration, David opted to stop his treatment in the summer and make the most of the life he has left, telling his story and campaigning to make assisted dying legal in the UK.
In his remaining days, he has thought long and hard about his ‘ideal’ death – a steak dinner and champagne in his summer house, as he listens to music and looks at paintings, before he sits with his family and loved ones. It may not be possible for him, but he hopes for other terminally ill people in the future, this is something they can choose to do.
‘I have no regrets, no self-pity,’ he says. ‘I have had a wonderful life.
‘I’m doing this because humanity needs better. No one should die in pain and with suffering. No one should have to watch someone they love die that way.
‘I want to have an impact. I want there to be a reason for all this and why it’s happening to me. If this has been my purpose, then I want to keep campaigning for as long as I can.’
If you have been affected by this story, please reach out to Dignity in Dying, or Samaritans, in the links provided.
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