‘Before Mum went to Dignitas I had to lie to everyone – it was horrendous’

Catie Fenner was in her parents’ sitting room in Reading when her mother told her she had decided to end her life in Switzerland.

It was the usual Wednesday visit with her mum, Alison. Ever since the retired teacher had been diagnosed with Motor Neurone Disease, Catie had given up a day of work to spend with her.

Her mum was strong-minded and active; she loved music, walking and reading. But after her diagnosis at the John Radcliffe Hospital in Oxford

‘She had kept it from me and my sister for a long time while they sorted out the mountains of paperwork,’ Catie, 37, remembers sadly.

‘When she finally told me her decision I remember turning to Dad and asking: “Is this real?”’ But she was set on it. There was a feeling of “of course that’s what Mum wanted to do”. It made sense. 

‘Just as we had done when she got the diagnosis, we just wanted to help her.’  

To protect her family from incrimination, Alison had written a very clearly-worded letter explaining that she was making her decision to go in sound mind. ‘She just couldn’t bear to be stuck in a bed, unable to move, eat or breathe independently,’ Catie, a teacher, explains.

It was key that Alison made it clear that no one else was involved her decision as assisted suicide is still illegal in this country, punishable by up to 14 years imprisonment.

It’s also why more than 500 Britons have had to flee to Swizterland to end their lives at Dignitas, an assisted suicide non-profit group, since it opened it’s doors in 1998.

To prevent her mum’s decision from being investigated by the authorities, Catie had to lie to everyone; her work, her friends, even her partner.  

‘I felt so isolated and trapped under this heavy weight. I didn’t blame any of it on my mum whatsoever. She was just trying to protect us,’ she remembers. 

Instead, Catie was left reeling in anxiety around her mum’s decision, alongside the anticipatory grief of losing Alison and the guilt of having to deceive everyone around her. At work, she would exaggerate her mum’s deterioration to make her premature death seem plausible.

‘One of the most horrendous things is that we all knew she was going but friends didn’t get the chance to say goodbye,’ adds Catie. ‘People would drop in for a cup of tea thinking they would see her the next week. You feel like you’re lying to everyone. It was awful.’

Eventually the weight of the secret got too much and she told her partner the truth about what was going on. Alison understood why she had to do it. 

In February 2023, Catie and her sister said a tearful goodbye at the taxi outside their home, but even then they had to conceal their feelings for fear of the driver working out what was going on and putting a stop to the journey. While they smiled on the outside, they sisters were ‘absolutely falling apart inside,’ remembers Catie. 

The last FaceTime call they had with Alison was agony, she adds. ‘I can’t put into words how hard it was to hang up on that call. But she was smiling – relieved that she was getting what she wanted and wasn’t stuck in a bed, dying.

‘My mum deserved more than dying miles away from home in that isolated way.’

That’s why Catie is now fighting for other terminally ill adults by supporting the assisted dying bill, which passed through its second reading at the House of Commons a year ago and is now being examined clause-by-clause in the House of Lords, with more than 1,000 amendments already tabled.

One of the supporters of the the Bill is former labor MP Paul Blomfield, who was a member of the Health and Social Care Select Committee and Chair of the Dignity in Dying campaign.

Paul told MPs in the Commons in a 2019 debate, that after a terminal lung cancer diagnosis, his father was found dead in his garage, having ended his own life. ‘The current law forced my father into a lonely decision and a lonely death, he said.

Speaking to Metro, Paul explains: ‘650 people, like my father, take their own lives each year. An estimated 17 people with terminal illness die in pain every day – even with the best palliative care.

‘[Assisted dying] has the potential to transform the way we think about talk about and support people through their last days. It is about autonomy and control and having a voice because some deaths are shocking beyond belief.’

However, it is one of the most contentious pieces of legislation ever seen in the UK, raising deep ethical, legal and social questions, triggering a strong divide among politicians, medical professionals, faith groups and the public.

Retired journalist Peter Sefton-Williams, has spoken against the bill after a misdiagnosis of MND led him to contact Dignitas.

After being told by a specialist he had between one and five years to live he was ‘absolutely terrified’ and visited a notorious suicide spot near where he lived. However, after Peter’s symptoms improved and he sought a third opinion, he was told he did in fact have Multifocal Motor Neuropathy, a rare but curable disease that mimics MND.

Disability-rights campaigner and actress Liz Carr also opposes legalising assisted dying, arguing that a change in law would send a troubling social message to disabled and chronically ill people, creating pressure to ‘choose death’.

While the British Medical Association has remained neutral on the Bill, it has warned that it could alter society’s attitude towards the elderly, seriously ill and disabled, sending the subliminal message that assisted dying is an option they ‘ought’ to consider. It has also warned that safeguards – such as time-limits, mental capacity checks and doctor assessments – do not reflect the real-world stresses of clinical practice, terminal illness and family dynamics.

Former police officer James Johnson tells Metro that the last time he saw his mum Peggy* she cut a lonely figure as she walked alone to the train station, clutching a small bag filled with medications and little else.

‘But then, as she got to the corner, she waved, blew kisses and did this exaggerated turn, clicking her feet together with a bit of a jump and a fist bump into the air,’ he remembers. ‘It was as if to say “it’s all okay, and I’m going to be relieved of my pain”. She was just so strong.’ 

In 2016, Peggy had been diagnosed with vasculitis, a condition where the immune system attacks and inflames blood vessels. Two years later the family learned that her condition was terminal and James could only watch as his mum began to live with intense pain and debilitating tremors that prevented her even drinking a cup of tea.

‘Mum was a very private person, but it was a horrible disease. She used to put everyone before herself, as a mother and in her career as a nurse. She’d treated people with vasculitis, and knew exactly what her demise would be.’

When Peggy had to break the news to James that she wasn’t ever going to get better, she met him in the New Forest, a spot between their homes where they liked to walk. She told him not to worry, that she’d made a decision to go to Dignitas and she wanted him to support her. He immediately agreed.

‘I desperately didn’t want her to be terminally ill, and I didn’t want her to go before she was ready. But most of all, I didn’t want my mum to be in pain and suffering,’ says James, 35, from Southampton. Peggy told James she’d considered suicide at home, but that she didn’t want to leave the emergency services to deal with the aftermath. 

‘That’s the sort of conversation you should never have to have with your mum’, he says, adding that Peggy refused the family’s offers to come with her because she didn’t want to incriminate them. 

Working as a police staff supervisor at the time, had James been caught helping his mum, he could have lost his job and his livelihood. 

While he is angry that it meant his mother had to travel to Switzerland alone, James admits he’s also devastated that Peggy had to go before she was ready, as a trip to Dignitas requires the patient to be well enough to travel. 

Eventually, James reached breaking point and he was signed off sick with stress.

‘The law is so backwards. At work, I’ve seen what happens when people are painted into a corner of being terminally ill and not having £15,000 to get to Switzerland. Of people who have had no other choice when morphine doesn’t touch the sides and they can’t cope any more,’ he says. 

Once in Switzerland Peggy sent texts of the scenery and a cat she’d befriended. She thanked her family for supporting her in her decision and one of her final messages read: ‘I woke up this morning and my first thought was: “Thank goodness. I’m not going to be in pain anymore”.

‘And then – that was it. There were no more text messages,’ remember James. ‘I knew then that she was being given her medication, she’d go to sleep and drift off into a peaceful death.’

Peggy died at the age of 67. Her son still has his old phone, filled with her final messages.

James says he wants to see an end to the practice of what he calls ‘outsourcing compassion’ to Switzerland, arguing that the law change will make life better for everyone; the dying, their families and the criminal justice system.

‘Police officers are still going to jobs to this day where they have to put handcuffs on people who have been accused of assisting the death of a loved one, when they know that this is the morally not right thing to be investigating,’ he explains.

Talking about why she supports of Dignity in Dying’s campaign to fight for the law change, Caties says that, like James, she sees it as her last act of service to a mother who always fought for what she believed was right.

‘My favourite anecdote about my mum was that in her twenties, she used to run through the forest with long, curly blonde hair and a hippie skirt, so she could disrupt the scent in fox hunts,’ she says.

‘Mum would always follow what she believed in and I would like to think that I am doing that for her now. I would hope that I am making her proud.’