By Joan Twelves

After Donald Trump’s recent presidential victory, a far-right tweet triumphantly declaring “Your body, My choice” went viral. This misogynistic phrase all too sadly sums up the debate over abortion rights in the US. But it’s also relevant to the current debate on assisted dying in the UK, which is set to be debated in Parliament this week.   

I’ve spent over 50 years campaigning for a woman’s right to choose whether and when she gives birth. I cannot separate that belief, either morally, philosophically or politically, from my belief that I – and all others – must have a right to choose whether and when I live or die.

As a former local councillor, my instincts are those of a politician, but, while it is politicians who are going to decide on whether I can have the right to die at a time of my choosing, my unflinching support for assisted dying is rooted in my lived experience.

Since my late teens I’ve suffered from Crohn’s disease, a condition that is agonising and incurable. I had extensive abdominal surgery in my twenties and again in my forties, resulting in the permanent removal of my bowel and much of my lower intestine. Despite occasional periods of remission, I have lived all of my adult life with intense pain, unpredictable (and potentially fatal) intestinal blockages, and all the problems associated with living with a stoma. When I was first ill, hardly anyone had heard of Crohn’s, and explaining what I was going through was nigh on impossible. I don’t do pity, and nor do I want to listen to others’ squeamishness about my bodily functions… So I rarely talk about it.

Crohn’s effectively stole the ‘90s and ‘00s from me – I had little energy, depression, brain fog, and only the barest interest in the politics which had been my life for the previous 20 years. When my late husband, Greg, become ill in the mid-‘00s it was a real struggle for me to care for him as I could barely care for myself.

New biological drugs gave me my life back in the early 2010s. But these wonder drugs, which I am still on, bring with them their own risks. Life expectancy for a woman with Crohn’s is nearly a decade less than the average. The biological and immunosuppressant drugs I have taken may be one of the reasons for that reduced life span. And, of course, Covid-19 loves to target those with weakened immunity, and the deadly threat of catching it has limited me to only the occasional trip into the outside world since 2020. Am I facing another lost decade?

The greatest risk to my life is intestinal blockage caused by the strictures and lesions of my several operations. Getting to hospital for morphine and rehydration is urgent, and even with morphine plus added steroids the pain will continue for several days, and I will be ill for some time afterwards.

Crohn’s isn’t my only ailment. Most of my body is creaking from the effects of 60 years of strong medications along with the wear and tear of age. In fact, these days when asked how I am, I usually respond with “Still here” or “How long have you got?” I officially have multiple chronic and complex comorbidities.

Chronic illness has defined most my adult life, but, just as I have tried not to let it limit what I can do, I have no intention of giving up yet. However, I know that one day the pain may become unbearable, and I want to be able to decide for myself that I don’t want any more of it, that I’m done.

Much of the debate over assisted dying has focused on the state of palliative care – something I know a bit about. Before Greg died of throat cancer at the age of 54, he used to call the palliative care people the ‘Death Squad’. He had already lost his voice, and he knew that the pain medication of offer would soon take away his personality and identity. For him that would have been a living death, as it would for me. We didn’t talk about assisted dying, but after over 30 years together we knew each other’s views. He wasn’t ready to die when he had a fatal arterial haemorrhage, but he had been told to ‘put his affairs in order’ – a chilling euphemism for saying it’s terminal.  

Palliative care works for some, but the arguments around assisted dying shouldn’t be a competition between improved palliative care and the right to die. In an advanced society, both should be available and both should be of equally high standard. Nobody should want to die because the palliative care isn’t good enough, or because hospices aren’t receiving the funding they need. On the other hand, nobody should be stopped from dying when they choose. Yes, robust protections must be in place to stop people being coerced into something they don’t want, but this risk isn’t a good enough excuse to deny those of us who truly want the right to choose when to die.

Think of it this way: would any supporter of abortion rights argue that it should be illegal while we wait for our gynae or maternity services to be improved? Similarly, should the risk of a young women being coerced into an abortion she doesn’t want mean that nobody else should be allowed to have one? The answer is clearly no and, much like abortion, assisted dying will continue to happen, so enshrining rights and protections into law will mean there can be proper safeguards to protect the vulnerable.

To me the argument of a ‘slippery slope’ is disingenuous. Did its advocates not notice the landslide at the height of the pandemic, when thousands were assisted to die without any choice? Again, legal safeguards and procedures are needed to protect medical staff as well as vulnerable patients.

Finally, MPs and many ministers may be struggling to come to a decision on this matter, but the UK public are crystal clear in their views. The latest YouGov poll shows substantial support for both the principle of assisted dying and the bill before Parliament. The study finds a super-majority of 73% in favour, with only 13% against, spanning all demographics and political parties.

Whatever our politicians decide, support for assisted dying isn’t going away. Although there are many sincere concerns about the proposals, there doesn’t seem to be anything that scrutiny during the passage of the bill and more investment in palliative care couldn’t fix. We must grasp this chance and ensure that dignity in death is a fundamental right down to the choice of the individual, not the state.

Joan Twelves is a Labour, trade union and community activist and former Labour Leader of Lambeth Council. This article originally appeared on her blog here.

Image: https://www.picpedia.org/chalkboard/a/assisted-dying.html License: Creative Commons 3 – CC BY-SA 3.0 Attribution: Alpha Stock Images – http://alphastockimages.com/ Original Author: Nick Youngson – link to – http://www.nyphotographic.com/