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A woman living with multiple sclerosis wants people with progressive diseases to have the choice of an assisted death and believes it might actually mean they live longer.
Sophie Korevaar, 41, has MS and fears a future where her health continually deteriorates, leaving her in constant pain and robbing her of the ability of doing all the things she loves – and the capability to end her life.
While she welcomes the assisted dying bill, which is being debated in the House of Lords for the first time today, she wants to see it expanded to include people with diseases like hers as she says it will make life better, not just death.
The Terminally Ill Adults Bill, which will give terminally-ill adults in England and Wales the right to end their own lives, was backed by 314 votes to 291 in the Commons, and has now gone to the House of Lords for further scrutiny and faces crucial votes.
Adults with a terminal illness who are expected to die within six months will be eligible for an assisted death. The person must have the mental capacity to make a choice about the end of their life, and must express a “clear, settled and informed” wish, free from coercion or pressure.
Ms Korevaar, who works part-time as a proofreader, says that it is almost like a type of “misery bingo”, with certain people having the “wrong” kind of illness for assisted death.
“Some people may have an illness which is not terminal but can leave them in incredible pain with no quality of life,” she said. “But because their condition is not classed as terminal because they could live in that awful situation for far more than six months, they will not have the same choices as other groups.
Sophie Korevaar, who has MS, says she wants to choose to go on her own terms rather than having a miserable, drawn out end “It doesn’t feel to me to be very logical or empathetic. If I knew this law existed and that I could access it – whether I actually ever did so or not – knowing it was there would be a comfort right now and improve my life. It is not just about what happens at the end.”
Ms Korevaar says that ironically, if the assisted dying law existed for people like her, it would actually help her to live for longer.
“I don’t want to live in a situation where I am just enduring life and if this happened I would be ready to go on my terms, rather than having a miserable, drawn out end,” she explained.
“MS can result in awful chronic pain which can’t be managed and I am particularly worried about reaching a stage where I cannot care for myself and have lost the ability to do the things that I love doing, such as reading.”
‘I am frightened of losing the window of action’
“If I get to a situation where all the things that are special to me are no longer part of my life, I would be ready to go with the people I love around me.
“If the time comes, I want to choose to end my life. I want to make that choice and put it off as long as possible,” she explained. “The situation now is that I need to be well enough to die. I need to be well enough to go to Dignitas in Switzerland if that’s what I choose or well enough to act by my own hand.
“It is a very morbid thing to think about, but if things deteriorate rapidly, I am frightened of losing the window of action where I could do something for myself.
“But if I was able to have assisted death, I could really eke things out and wait until I think I’m really done and then have the support to make that choice.”
With over 188 peers indicating they wish to speak, the Second Reading of the Bill will now take place across two days. The second day of debate will take place on Friday 19 September. It will then move on to detailed scrutiny by peers at committee stage.
Some critics of the Bill say it does not have enough safeguards to prevent people from being pressured into taking their own lives.
Ms Korevaar said: “There is a difference between safeguards and barriers. We have to make sure there are good safeguards, but not barriers for people accessing this because there is a fine line.”
Sophie says she does not want to reach a situation with her MS where all the things that are special to her are no longer part of her life Ms Korevaar, who lives in Bristol, told The i Paper she was diagnosed with Crohn’s disease when she was in her early 30s after being rushed to hospital with severe abdominal pain.
She says her MS may have potentially been caused by a rare side effect of one of the medications she was taking for Crohn’s disease. From experiencing her first symptoms to diagnosis of MS took a couple of years as doctors had to monitor the changes.
“I have the relapsing-remitting form of MS,” said Ms Korevaar. “At first, I lost the feeling in the back of my legs and wasn’t sure what it was. Then I completely lost the vision in my left eye.
“My vision is mostly back now as that is what happens with the MS I have. I have relapses and then I get things back. But as time progresses, damage is a little more sustained and things don’t come back as they used to and things get worse.
“At some point, the MS will become secondary progressive. That’s when there is no remitting stage and it is just relapses. Things will get progressively worse at that stage.”
Campaigners for assisted dying have gathered on Parliament Square to show their support for the Bill.
Graham Winyard, director of My Death, My Decision, a grassroots movement which campaigns for assisted dying reform, said: “We admire Sophie’s strength and openness in sharing her experience.
“Stories like hers highlight the human reality behind this law change, and why it is so vital to listen and learn as this conversation around assisted dying continues.
“We hope the House of Lords listens to people like Sophie. The Terminally Ill Adults Bill is a compassionate, sensible step forward giving some people the right to choose a dignified end, surrounded by love, not fear.”
Andrew Copson, chief executive of Humanists UK, said: “Peers now have the chance to listen to the evidence and the personal experiences of dying people and their families.
“The public overwhelmingly supports change and we hope peers will take this historic opportunity to make sure compassion, dignity, and safety are at the heart of our law.”
For confidential emotional support, Samaritans is available 24 hours a day, seven days a week. Call for free on 116 123, email jo@samaritans.org or visit samaritans.org
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