My mother died two decades ago from Motor Neurone Disease. I was living in Derry, with primary caring responsibility for three young children. The guilt of not helping to look after her in those final months lingers with me.
It was my father who provided that caring role. But it could never be adequate to meet her needs. Motor Neurone Disease can be an awful illness.
In my mum’s case the decline was gradual and then it accelerated with horrifying speed. By the time of her death, she had long since been able to walk, or even to sit. She could barely swallow or breathe. Her life was limited to lying in a downstairs bed, looking at the ceiling, unable to talk or move.
My mother never told me or my father that in such circumstances she would prefer to die – though I knew her well enough that I am confident that this would have been her wish. It became, at its end in those last few months, a terrible and terminal punishment.
She had survived TB as a teenager and a miscarriage and a still birth as an adult, but I cannot believe that anything in her life was as bad as her lingering death.
Motor Neurone Disease can be an inherited illness, but it is not necessarily so. There is a possibility that one day – hopefully not soon – I too could get MND. Or, indeed, another illness through which I cease to have any quality of life, where I might spend all my time wishing I was dead. As, surely, my mother must have wished towards the end.
I am not arguing that anyone with any bad illness should be encouraged or assisted to die. But I do believe that if a person totally believes their terminal illness has become too terrible to endure, their right to end it must be respected.
Two arguments have been put forward against this. One is that palliative care should be adequately financially supported. This is of course entirely right – but is beside the point. Palliative care cannot always make the unbearable bearable.
The other assertion is that assisted dying is an offence to God. However, I am an atheist and my mother was an agnostic who had stopped attending church in her youth.
Those arguing that assisted dying should not be legalised because it is anti-religious are asserting that their religious outlooks are superior to mine. And, obviously, people who are Christian or Muslim do believe that. It is their right not just to believe in their religions, but also to believe that they are correct and I am wrong.
However, those are personal beliefs. These should not be enshrined as the views of the State and imposed on us all. Our society has surely moved beyond the point at which the Church (whichever church that is) can impose its moral philosophy on us all. We have been there – and escaped.
When it comes to end of life, the individual’s rights must be respected.