'The horrors of the end of this disease made me reconsider' - mum's call for assisted dying law
A mum-of-three and new grandmother has called for assisted dying to be legalised after being diagnosed with motor neurone disease. Lauren Cope reports on the end-of-life debate.
It was in November 2017 that Rosie Gilbert, 62, first noticed something was wrong as she walked into Norwich from her home off Dereham Road.
“I was walking and my right foot didn’t feel right,” she said. “I thought it was the boots I was wearing, but it didn’t fade and I spent months trying to explore what was the matter.”
Physiotherapy appointments, occupational therapy, orthopaedic evaluations and even a clear brain scan shed little light on the problem.
“When the brain scan came back people kept saying ‘at least it’s nothing serious, it’s nothing sinister’,” she said. “But orthopaedics said it’s not an issue with the spine, and instead thought it was neurological.”
More tests finally led to a diagnosis in November - motor neurone disease (MND).
“When I heard those three words I just froze,” she said. “My mind never went there, it wasn’t something I’d even considered.
“There are only 5,000 cases in the UK and about 90 in East Anglia. I knew nothing about it. It was a complete bolt out of the blue.”
It came just months after Ms Gilbert retired from a 40-year career as a teacher and became a grandmother for the first time.
“It hits you after a while, and it turns your life upside down,” she said. “I hadn’t prepared a will, which I had to do, sort out the power of attorney, find a burial plot, organise a funeral. An awful lot of admin, and all the plans for retirement gone.”
A rare condition which affects the brain and nerves, MND progresses over time and eventually affects breathing, swallowing, talking and movement.
People can live for months or years with the condition - Stephen Hawking, who had a slow progressing form, did so for 35 years - but for many the life expectancy is roughly two to five years from the start of symptoms.
Its degenerative nature means it is often at the heart of debates around assisted dying.
Currently, someone with a terminal illness in England has little control over how, and when, they die, with loved ones risking prosecution if they help.
Most campaigning in this country revolves around introducing assisted dying laws, which would apply to a terminally ill, but mentally competent, person with fewer than six months to live.
Euthanasia (usually controlled by a healthcare professional) and assisted suicide (helping another person to die) are both illegal in England, and can both include conditions which, while incurable or chronic, are not terminal.
In Norfolk and Suffolk, there have been four crimes logged under the Suicide Act, which makes assisted suicide illegal, since 2015, though a lack of evidence or public interest in prosecution saw all dropped without charge.
In 2016, Ian Taylor, from Rattlesden, in Suffolk, was arrested on suspicion of assisting his wife Mary’s suicide and later on suspicion of her murder. In 2017, it was confirmed he would face no further action over her death.
It remains a hugely divisive debate - Supporters say people who are suffering should be able to choose what happens at the end of their lives, enabling them to have a dignified death.
But opponents say life should be protected and raise concerns over how to stop abuse of the law, saying instead that good palliative care should be prioritised.
Having been raised with a Catholic background, Ms Gilbert said her position on assisted dying had been influenced by her faith - but research following her diagnosis had caused a rethink.
She found the church does allow “nature to take its course”, and allows the refusal of “extraordinary” treatments.
“I hadn’t really thought about the subject before now,” she said. “It’s always just been that it’s wrong, it’s morally unacceptable, so I had to look into that.
“The horrors of the end of this disease made me reconsider. The paralysis, being a burden on my family and for how long. At the end some people only have control over one eyelid.
“It was the fear of what is to come - and for my family, too. People often talk about what the person diagnosed is suffering, but your loved ones are watching you suffer too.”
After the diagnosis, she signed an Advance Decision to Refuse Treatment (ADRT), which tells doctors not to provide CPR or invasive, or noninvasive, ventilation.
But Ms Gilbert said changing the law would give her control as the disease develops.
“It would transform you,” she said. “If someone could say ‘yes, that option is there’, it would give comfort. It would be reassuring, knowing that I will have some control at some point down the line.”
She said a strict criteria should be in place, with more than one doctor’s approval.
It would avoid forcing people to travel abroad, potentially compelling them to make the decision before it was necessary, she said.
“I would like to see a change in legislation. I know personally I couldn’t ask my family to do this, to risk prosecution. I know they would support me along whatever path I chose, but I do worry about the impact on them in five, 10, 15 years.”
For now, she said she was taking life “one day at a time”.
“I’m very grateful for what I still have,” she said. “Walking is difficult, and I am becoming weaker in my hands and legs. It’s too awful to look ahead, I’ve just got to stay in the present moment.
“We are all too afraid to talk about this. We have had to have very difficult conversations in the family since my diagnosis. But if this brings just one family to the realisation that we need to talk about it, then it’s worth it.”
One of her three sons, Joe, is raising funds for the Motor Neurone Disease Association, which Ms Gilbert described as “phenomenal”.
He will be taking on several challenges for the cause, including a 53-mile ultramarathon in the highlands of Scotland.
• To donate, visit www.justgiving.com/fundraising/mndmum
• ‘He suffered so much’
Five years ago, Charlotte Alexander, 34, lost her father to cancer.
He died aged 56, just 18 days after he was diagnosed, from what the family now believe began as pancreatic cancer.
Mrs Alexander, who lives in Wetheringsett in north Suffolk with her husband and young son, said while his suffering may have been short, he faced a painful and undignified death.
“We did discuss Dignitas after he was told he was dying but it never an option, because he was already way too sick,” she said. “He didn’t have the option.
“I think that was the hardest thing. My dad’s biggest fear was that he would die painfully and an undignified death. He wanted reassurances that it wouldn’t be the case, that he’d die in his sleep, but no-one could give him that.
“He was a very proud man. Having nurses taking him to the toilet was horrible, I remember him saying ‘this is awful’. He hated it.
“He was a very strong, fit farmer, but when he died he was a gaunt, withdrawn, grey man with his eyes rolled back in his head. It was heartbreaking to watch.”
She said current assisted suicide laws forced people to drastic measures, sometimes alone or in unfamiliar places.
“We are allowed to make almost every choice in our lives - you choose to marry, have children, where you work, what you do and how you live, but we don’t get that right when it comes to the end of our lives,” she said.
“We don’t let our pets suffer. We put them out of their pain. When you have cancer or a terminal illness like that, you are powerless. You feel powerless.
“Giving someone the choice can give them that ultimate control back. If we had those laws we would get to a point where we could have those conversations.”
A couple of weeks before her dad died, she said the family spent a particularly warm March day out on his farm, with children and grandchildren all together.
“He suffered so much after that,” she said. “The day he died he faced incredible pain. I would not choose to remember him like that, though it is still there. What quality of life did he have? I’m grateful for some of the days we had, because we had really frank, honest conversations. But in those final days he didn’t need to suffer.”
• ‘I saw people who left it too late’
It was a young woman battling Huntington’s Disease that led to Jo Cartwright’s involvement in assisted dying campaigning.
They met when the 34-year-old, who lives in Norwich, worked as a healthcare assistant.
“I looked after a girl who was 27 and had Huntingdon’s Disease and cancer,” she said. “Her dad had died of the same illness. Seeing what she was facing, I started thinking that if you are dying why do you have to be left in the position she was in?”
Today a physician associate in a Norfolk GP surgery, for seven years she was campaign director for charity Dignity in Dying, and co-authored a book on the topic.
She said, as with many sensitive subjects, there were people on extreme ends of the argument, but it was the debate and nuance in the middle that was really interesting.
She said she believed it was possible to introduce assisted dying laws safely.
“There are concerns that people may feel like a burden and choose to die because of that,” she said. “People might feel like a burden now, but they can’t talk about it, and they might be stockpiling medication. At least with a system in place they can talk about it. That conversation needs to be started.
“I saw people who left it too late - a mum whose son was in a vegetative state after an accident and wanted to do something to end that or help him, but couldn’t.”
Mrs Cartwright said any future law change would be a tribute to those who died while fighting for it.
“To keep fighting for a battle that won’t impact you or benefit you takes huge strength,” she said. “It’s a real legacy.”
• What do both sides think?
The assisted dying debate is nothing if not emotive.
Proponents say people should not be kept alive against their will, and that those facing a terminal illness should be able to choose a dignified death.
But concerns often centre on how laws would be regulated and whether the system could be abused, with fears people could feel pressure to not be a burden.
Care Not Killing, an alliance which opposes assisted dying and euthanasia, said assisted dying created a system which “fails to protect vulnerable patients and which has seen its so-called safeguards eroded”.
A spokesperson cited 2017 figures from US state Oregon, where assisted dying is legal, which show that the number of people citing being a “burden on family/friends/caregivers” as a reason to use the law rose from 13pc in 1998 to 55pc in 2017.
By the same year, the conditions listed as the causes of 143 assisted deaths there included diabetes, gastrointestinal disease, arthritis and kidney failure.
The alliance also said many who chose to end their lives did so while dealing with mental health problems, or while feeling lonely, “showing how the law has been extended way beyond its original purpose”.
The topic has also split the medical profession.
Bodies such as the British Medical Association and Royal College of Physicians (RCP) have traditionally opposed assisted dying, but have faced pressure to adopt a neutral stance.
Yesterday, the RCP closed a poll with members on a potential change, after a similar vote in 2014 saw a majority vote to reject it.
A survey by Doctors.net.uk of 733 medics last February found that 55pc agree or strongly agree with assisted dying.
One Norfolk GP, speaking anonymously, said many GPs would have a “degree of sympathy” with the case for reviewing current laws.
But they said there were several issues to explore - including the impact on the doctor/patient relationship and the personal views of those working in the field. “The profession would rightly demand full legal backing and protection given the general background of rising legal claims and actions against doctors,” they said.
• Political developments
Under it, a person would need to be aged at least 18, have a terminal illness, less than six months to live, the capacity to make the decision and a “voluntary, clear, settled and informed wish” to do so. It would need to be countersigned by two medical practitioners and given approval by the High Court.
In our region, three MPs - Clive Lewis, Chloe Smith and Norman Lamb - voted in favour of new laws, while two - Elizabeth Truss and Brandon Lewis - were absent. Those remaining voted against the bill.
Four years on, we asked our MPs whether their position had changed. For those that responded, it hadn’t - including Great Yarmouth’s Mr Lewis, who said: “My concern has always been how to allow for assisted dying for those who wish to end their life, while at the same time protecting those who may be vulnerable to abuse of such a system being but in place. I am yet to see a workable solution to this problem.”
Ahead of the 2015 vote, figures showed 36 people from the east of England had travelled to Swiss not-for-profit society Dignitas to end their lives, a lengthy, and costly, process.
Potential patients must be able to take medication themselves, must undergo counselling and personal interviews, an exploration of treatments and must be able to afford the cost, which is often several thousand pounds.
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