20/06/2025
I have long accepted that the end of life is a process and a journey that we will all share without escape and I would prefer for my own self being to be able to have some choice over when that might happen if faced with a terminal, chronic or ill-health situation of which I may not recover or perhaps decide that I cannot live with. So what’s the alternative and what’s available?
Palliative care in the UK is apparently of a gold star standard. I’m not sure what that means exactly but whatever it is, not everyone wants it. Some will accept their fate and wait for the end however it comes either drugged up in a hospital bed or at home, it's usually centered around trying to make the patient comfortable as they head towards that end. This can be quite a long, drawn-out process usually being induced with copious amounts of drugs, delaying an inevitable outcome whilst your loved ones sit around and wait.
No thanks, that’s not for me.
For many the end can be a welcome relief when all the pain relief in the world wasn’t enough to stop the agonising pain and torture of your illness as it overtakes you and the nursing staff start to give you more and more medication to help hasten the end. It’s an unspoken given that this happens, so for some, an assisted end is already happening but in a very controlled minimal way.
For those of us who don't want to accept that, you would probably start to think about self-administering your own end. Without the support of family this can be a lonely journey as the alternatives are too difficult to think about. It isn’t easy to end your life, the body is capable of withstanding many things even though life itself is fragile. Would you want to starve yourself to death, this is supposedly very painful. Would you be able to drown yourself in the bath or swallow all those pills even if you had enough to do the job properly and would you know what to take. The reality is stark and grim. Self-deliverance is a lonely place when you have limited resources or no physical capacity to be able to self-administer. And if it all goes wrong, what then.
Making the decision to travel abroad, leaving everything you know is a luxury afforded only to those who can afford it and is an extravagant last wish only available to those with the means to pay. But what if you don't have that kind of money, what then?
There needs to be a balance between the two needs to reflect an individual’s right to be able to choose death over life, at a time of their choosing and not when their illness or body dictates. It’s essential to think about it in terms of ending suffering rather than ending life, no-one actually wants to die, they just want the pain to stop a For some reason there is this fear around death and how it will end, it's a taboo subject never to be spoken of except in whispered conversations around the dying person’s bed. We fear things that are unknown to us it's only natural, which is why the subject should be open for discussion and normalised over a cup of tea and a biscuit with your loved ones.
Let them know what you want or don't want before it's too late. Have that conversation, it isn't morbid, it's life and it’s taking control of a potentially difficult end.
I'm not immune to those that don’t want to have that conversation and don't believe in assisted dying but that’s the whole point, it's their choice not to do it but I don’t have that choice to be able to do it.
We have choice over almost every aspect of our lives except around when we will die.
The British Medical Association or BMA states that, ‘An assisted dying law, however well intended, would alter society’s attitude towards the elderly, seriously ill and disabled, and send the subliminal message that assisted dying is an option they ‘ought’ to consider’ Not exactly a strong argument as the suggestion here is that this group of people could feel pressurized or coerced into an assisted end so as not to feel a burden to their loved ones. The fact is that part of the reason assisted dying is wanted as a choice by individuals is that they, not their relatives, don’t want to be a burden, it’s not about how you feel about it, it’s what we feel about it that matters and that’s the whole point, it’s what we want not what you perceive as what we want or what you might want to push upon us. Coercive behaviour isn’t anything new and many people have already been coerced into ending their lives already yet no-one is campaigning about that. With this in mind a legal right with safeguards in place would actually offer protection for those who are vulnerable as they will be more protected and not any more at risk than they are already.
As for the religious view, well I really don’t think there is any argument that stacks up here, religious groups have already opposed everything else; LGBTQ rights, Abortion, Divorce, this has to be the last thing they can oppose and there just isn’t anything of substance for them to argue. However I should make it clear that I am not anti-religious in any way, everyone has the right to believe and or worship their God in whatever form they believe in, it’s your business not mine and you have every right to it.
Then there’s the slippery slope, but what exactly is this slippery slope? There is a fear that the criteria of an assisted end would be extended beyond that of being terminally ill and yes that’s not a bad thing but should we be fearful of this and what exactly would it mean if it were extended?
The six months to live as a criteria will be so difficult to measure, no one can say with certainty that someone has just six months or less to live as many live beyond this time frame so it should be a guidance only, a way to measure the possibility but as we all know, sickness, illness disease, it’s a difficult area to quantify in terms of how much longer you have left to live or for some just to exist.
A Dementia patient is at some point going to die with their condition and may well lose capacity way before their last six months, they may have already made it clear that they don’t want to be kept alive so how from a legal point of view will that person be able to communicate that the time has come? You may live for many years but maybe not in the way that the individual wants too, at what point can you say with certainty that they have less than six months to live when they don’t even want to have to get to that point where they have already lost capacity in so many ways already? It may be easier with a Cancer diagnosis to say for certainty how much longer you have but what about all those living with or managing or suffering with conditions which don’t fall within this terminal six months to live criteria, people like my mum?
The six-month rule will at some point need to be more inclusive and less exclusive as it will still deny many the end they want.
My mum suffered in terrible agonising pain with a Neurological condition called Dystonia which was progressive despite being told it wasn’t. I watched over a ten-year period as she shrank to a rack of bones, living on a cocktail of drugs to help her through each day, she had no quality to her life, there was no escape from it and she was never going to recover. It was her choice not to have to endure another moment living in her own torturous hell, I supported and helped her where I could because she was my mother and I loved her but she would not have met the criteria of the six months left to live due to terminal illness being proposed, but it is a start.
It's very simple, why should it be so hard to have the help you need at the time when you need it most, at the end of your own life.
I've already had the conversation with my children. We laugh about it but they know what I want and don't want, it’s just part of our lives.
I hope that when faced with my own impending end for whatever reason that there will be a law in place to allow for an assisted end and if it isn't then my kids know what to do or I’ll rely on the kindness of strangers with an online Just Giving page to get me there.
But it will be my choice to say when enough is enough and to have some dignity and say in how that happens.
