I am very lucky to say I can only imagine what it feels like to be told you are terminally ill.
It must be gut-wrenching. Your life is being taken away too soon, and, in the UK at least, you don’t have much choice other than to await the inevitable, no matter how ill or incapable you might become in the time leading up to your death.
The option of assisted dying exists in some countries, such as Canada, Belgium, the Netherlands, and Switzerland, giving terminally ill patients the opportunity to seek advice, care and help to end their life in a safe and comfortable way when they are ready.
Watch 51-year-old Christie Arntsen’s story here:
In the UK, it is illegal for terminal people to undergo assisted suicide. Even if they travel abroad to one of the countries where it is legal, whoever went with them could be implicated.
As a result, terminally ill people are left with few options. They could travel alone to somewhere where assisted dying is legal, so as not to risk their family or friends getting prosecuted; or they have to live through their illness until their life reaches its end naturally.
But who’s to tell these people that they can’t have some say in the way they die? Why should they be forced to go through extra pain, and have families forced to watch them suffer, when they could die peacefully, painlessly, and still as ‘themselves’?
The opportunity of assisted dying would leave a patient’s loved ones confident that they had a good life, and that they were happy at the end, as well as giving the family time to prepare for what was coming.
Being able to choose when to end their life also means the terminally ill person still has some control; they can die with dignity, knowing they would be remembered as their best self.
But UK law means it is illegal for patients to have this content end to life. The campaign Dignity in Dying is fighting to change that.
Their movement is made up of three key elements:
Choice – over where we die, who is present and our treatment options
Access – to expert information on our options, good quality end-of-life care
Control – over how we die, our symptoms, pain relief and planning our own death
UNILAD spoke to Christie Arntsen, who is campaigning for Dignity in Dying. In 2013, the 51-year-old was diagnosed with incurable secondary breast cancer.
She knows first-hand exactly how it feels to have your life cut short; Christie has a five per cent chance of surviving the next five years.
Rather than having to live through the distress of her disease in the final weeks of her life, the activist is fighting to have a say in the way she dies.
Explaining her decision, the 51-year-old said:
As a person who needs to be in control, it was scary to realise that when I started to look into the end of life options, the options were so limited.
After being responsible for all the choices I had made throughout my life, I would not be able to chose how I died. This led me to start researching different suicide methods.
It was around the same time I talked to [husband] Jon, and [children] Rosie and Josh and explained to them how the current system works. Rosie and Josh were bewildered that assisted dying for terminally ill people was not an option for people in the UK. It just didn’t make sense.
Great to be here at #SCC19 to talk about why Scottish Conservatives should support compassion and choice at the end of life. Come down, see our stand, and add your name to the official record of supprt at https://t.co/ceE6t3o4pn pic.twitter.com/CAmZELD80x
— Dignity in Dying (@dignityindying) May 3, 2019
Though the thought of dying will always be a difficult one, Christie has argued that it would be easier to stay positive and continue enjoying life if she was able to seek assisted death when the time is right.
I am scared to try to commit suicide for two reasons, the first is that it can be unreliable and I could end up in a more complicated situation than before, the other is that I could never knowingly allow someone to discover me and them have to live with that memory.
My family completely understand why I would want to end my life by assisted suicide. I would be in the last few weeks of my life, probably in a hospice – why do I want to drag out that period of pain and suffering?
I’m not scared of death, I’m scared of dying.
“I just want the choice. I just want all options.”
Kris was diagnosed with breast cancer in 2009.
Just knowing that she had the option of an assisted death – amongst all her other treatment options – would give her a sense of comfort. pic.twitter.com/1kiCJ8vfjg
— Dignity in Dying (@dignityindying) May 1, 2019
Christie discovered Dignity in Dying, and although her family is usually very private, the 51-year-old agreed to share her story in the hope to raise awareness and change the options available for people who are in the last stages of dying.
The former outreach worker explained further about what the campaign is hoping to achieve, pointing out that the option of assisted dying would only be available to terminally ill people – defined as those who have been given a life expectancy of approximately six months.
Christie went on:
What we are hoping for is choice of an assisted death to be available in the last few weeks of dying.
The decision to have an assisted death would be surrounded by stringent safeguards: the patient’s terminal status and mental status would be assessed by two doctors, and then the request would go before a judge.
In 2018, Christie acted as a witness in a legal case supported by Dignity in Dying, in which a retired lecturer called Noel Conway, who has motor neurone disease, was challenging the ban on assisted dying on human rights grounds.
Unfortunately Noel’s case was rejected by the Supreme Court in November, but the campaigners are not giving up.
Noel's not ready to die yet; he's got things to take care of.
His motor neurone disease means that if he were to go to Dignitas, he’d have to travel before he was ready, to ensure he could make the journey.
All he wants is the choice of a dignified death in his home country. pic.twitter.com/TVH7i9LE9q
— Dignity in Dying (@dignityindying) April 28, 2019
Last month, the not-for-profit announced the results of the largest poll ever conducted on assisted dying.
The survey asked more than five thousand people from England, Wales and Scotland whether they would support a change in the law, to allow terminally ill, mentally competent adults to have an assisted death, provided they met strict upfront safeguards.
Out of the 5,000 participants, 84 per cent said they would support the change in law.
Support is consistently strong across demographics including gender, age, social grade and region. Many people who stated they had a disability strongly support the stance, and there is broad support for a law change across most faith groups, including more than 82 per cent among Christians.
But still, in England, Wales and Northern Ireland, assisting a suicide is a crime, and those convicted could face up to 14 years in prison.
Dignity in Dying explain there is no specific crime of assisting a suicide in Scotland, but it is possible that helping a person to die could lead to prosecution for culpable homicide.
Christie spoke about what could be done to encourage a change in law, saying:
In order for the law to change we each need to be letting our MP’s know the feeling of the public. 84 per cent of people surveyed believe that assisted dying should be available as an option for terminally ill, dying people. It is time our elective representatives listened.
They need to understand the enormity of peace this could bring to dying people and their families.
Clearly the public can already see that the current situation cannot continue as it is, MPs and MSPs need to catch up.
The 51-year-old admitted she is campaigning for a law which probably won’t be available in her lifetime, but she hopes her work will make a difference for those who find themselves in her situation in the future.
Christie and her family have discussed the possibility of her going to Dignitas in Switzerland to undergo assisted suicide when the time comes, but in order to deal with the travelling, paperwork and health checks alone, so as not to implicate her family, Christie would likely have to go before she is really ready to end her life.
On balance I have decided that this would all be too much for all of us. Imagine how my death could be if assisted dying was an option for me in the UK, I would only choose it when the pain had become too much in the last weeks of my life.
I could say ‘Thank you for my wonderful life, but now it’s time to leave.’
Why is it illegal for someone to help a terminally ill person to have a safe, content death? Is that really such a crime?
Those in charge of the law shouldn’t have the final say on how someone’s life must end. That decision comes down to one person alone; the person suffering with a terminal illness.
If a terminally ill person wants to choose how they end their life, they should be able to.
Support Dignity in Dying here.
If you have a story you want to tell, send it to [email protected]