‘I lived in fear after going to Dignitas with my mum’
FLEET MAN IS CAMPAIGNING FOR A CHANGE IN THE LAW SO OTHER FAMILIES DON’T SUFFER LIKE HIS
IN 2016, 47 people from the UK travelled to Dignitas in Switzerland to end their lives via assisted suicide.
One of those was a Hampshire woman who had spent the majority of her adult life battling Multiple Sclerosis (MS).
Susan Spicer was diagnosed with the lifelong condition at the age of 21 while living in the North African country of Sudan.
After returning to the UK for further tests she continued to live with the disease without too many issues for more than a decade.
Her only child, son Tom BeagleySpicer, 36 from Fleet, said: “She lived life quite normally up until around 1993, 1994, so she would’ve been about 32, 33. Over that period of time she had had the attacks of MS, spent time not being able to walk or use her arms and things like that.”
MS is a condition that can affect the brain and spinal cord and causes a range of potential symptoms, including movement problems and vision and balance issues.
Over time Susan became wheelchair bound and relied on three visits from carers a day as her legs gradually stopped working and she lost a lot of use of her arms. She also lost her sight fully in one eye and was losing vision in the other.
In 2014 the family was hit with the news that Susan had also been diagnosed with breast cancer.
Not strong enough for chemotherapy, doctors opted for radiotherapy and removal of the tumour. The treatment was successful, however in 2015 doctors believed the cancer was returning.
It was in December of that year that she invited Tom and his husband, Darrel, for a lunch that the pair will never forget.
The 36-year-old said: “She sat there and she said ‘I’ve had enough. I’m ready to go’. It was out of the blue because I hadn’t been expecting it at that time, but we asked her more and she said she was ready to explore the Dignitas route.”
The pair worked together from that point, with Tom taking redundancy to spend as much time by his mum’s side as possible.
In April 2016, Susan, Tom and Darrel travelled to Switzerland where they spent five days together. On the final day they were joined by Tom’s dad and step mum who drove them to the clinic.
Tom said: “The journey was beautiful but because it’s in secret, because it’s behind closed doors, because it’s a lot of lying and because you live in fear, it took away all the good that came from that journey. It overshadowed it.”
Upon returning, a conversation the couple had with Tom’s mum’s carers heightened the fear they felt after it was revealed to them that the care team were under investigation by the care company.
Tom said: “It elevated our fears and we were scared because we’d seen in the press there had been families who had been arrested and dragged into police stations, interviewed and having to prove they didn’t force their loved one to go there. That fear, the sleepless nights I had for the first 12 months, was tremendous because you just live in constant fear.”
Currently, anyone who travels with someone or helps them travel to Dignitas or a similar place can face up to 14 years in prison if anything untoward is found in each individual case.
Although prosecution is unlikely, the law, according to Dignity in Dying, remains a “grey area”.
The not-for-profit organisation is hoping to change the 1961 Suicide Act that decriminalised a person ending their own life but made any form of assistance a crime.
A spokesman for the organisation said: “Dignity in Dying campaigns to change the law on assisted dying, namely to allow this as a choice for terminally ill mentally competent adults in their final months of life, really to ease the process for people who are already dying. Our assessment of the current law is that it’s not working when 50 Brits a year are having to fly to another country to have an assisted death.”
The organisation is pushing for the Assisted Dying Bill, proposed by its chairman Baroness Meacher that is making its way through the House of Lords, to become a reality. It is based on the model in place in the US state of Oregon, but other groups are not keen on it.
Care Not Killing came together in the early 2000s when Lord Joffe introduced into Parliament his Patient (Assisted Dying) Bill. The organisation thinks improving palliative care is the answer, not the Oregon-based bill put forward by Baroness Meacher.
A spokesman for the group said: “We would argue the current law is simple, it’s about public safety and protecting people.
“In 2019, 59% of people who chose to end their life (in Oregon) sighted burden as one of their reasons for their decision. A further 7.4% cited financial reasons.
“You very quickly see in Oregon, but also in other countries where vulnerable people who fear that they are becoming a burden, start opting for this very, very radical and controversial solution.
“It’s a very difficult message when you start saying to people because you are disabled, because you are terminally ill somehow your life is less worth living because we’ll allow you to get the drugs to kill yourself or we will kill you.”
A 2020 survey by the British Medical Association (BMA) found that 40% of doctors supported administering drugs for people to self-administer the end of their life, while 33% opposed.
In September, the BMA narrowly passed a motion to move from its stance of opposing a change in the law to adopting a position of neutrality.
Tom spoke with MPs recently about his and his mum’s experience, and is determined to keep speaking to spark a change.
He said: “I keep talking about mum to keep her memory and her legacy alive because what she did was so powerful.
“It sets the scene of the other problem of why we need change, because no one should go through the fear and the pain and the worry that mum and the other families have gone through.”