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Supporting Choice At The End Of Life

19/07/2017 10:56 BST | Updated 19/07/2017 10:56 BST
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#Imwithnoel

I spent last Friday enjoying a wonderful boat trip from Westminster Pier beyond Greenwich and back again. It was a lovely sunny day and there was great food to eat. I met some other wheelies too and it was good to swap stories.

But, this wasn't just a "jolly". The purpose of the boat trip was to support Noel Conway's wish to die with dignity at a time of his choosing.

Dignity in Dying chartered the boat to raise awareness of Noel's forthcoming High Court case. The boat was adorned with banners, and several hundred passengers held placards. We shouted our support for Noel, in front of the Houses of Parliament. This was to remind MPs that 82% of the public support the choice of assisted dying for terminally ill adults.

Noel Conway is a 67-year-old retired college lecturer from Shropshire. He was diagnosed with amyotrophic lateral sclerosis (ALS), a form of motor neurone disease in 2014. His condition is incurable and he is not expected to live beyond the next 12 months. Noel feels that he is prevented from exercising his right to choice and control over his death under the current law. He fears that without a change in the law he may be forced to suffer against his wishes.

I've never nursed someone with ALS but I have nursed people with Motor Neurone Disease. This is a cruel illness with basically ends with someone drowning from the secretions in their lungs. The person I remember most was Dougie. He was the Charge Nurse on the second ward I worked on during my training. He taught me so much about how to be a good nurse, which I have never forgotten. But I've also never forgotten nursing him until he died, during my final year of training.

Dougie, like many nurses was not an easy patient. He would allow you to care for him once and if you didn't meet his high standards he would make sure you never gave him routine care again. I passed the test, and spent many hours trying to keep him comfortable and pain free. Dougie has to be moved carefully and slowly so we could ensure he did not develop pressure sores. Despite the morphine he received he was still in pain. Moving him on to his side made it much harder for him to breathe.

I had been caring for him for about two weeks when I had a long weekend, four days, off duty. When I went in to see him that Thursday night, he touched my hand longer than usual and rasped "Thanks for everything, bye". I tried telling him I would see him again in five days, but he just shock his head.

When I returned to the ward, Dougie's room was empty. I spoke to the Ward Sister about how Dougie somehow knew he was going to die. She told me that many patients know when they are going to die. Dougie was perceptive as ever. The Ward Sister also told me that Dougie had had a good death, he was pain free and he died peacefully. I shed some tears with my colleagues. I was also thankful that I was part of the ward staff who enabled him to die gently. It's that knowledge that has lead me to understand and support what Noel is asking for.

I know from other experiences I had, especially on busy wards, that it is not always possible to give people a good, pain free death. Even if there is great medical and nursing care, sometimes we cannot control distressing symptoms at the end of a patient's life well enough.

I'm very aware that I too, at some point in the future will get to the stage when the doctors can do no more for the conditions I have. I don't want my children and grandchildren, or my partner seeing me suffering, struggling to breathe or being in unbearable pain. I know already from the close brushes I've had, that the feeling of being unable to breathe is terrifying.

I want to have a good death, I also want to choose when that moment will be. This is why I'm supporting Noel Conway. His lawyers are in the High Court this week, asking for him to be able to die when he chooses. Noel's plea is for him, and him alone to be given that option.

This is not about the beginning of euthanasia for disabled people. This is not the start of a slippery slope. This is not about coercing disabled people to die. It is about enabling people to have a choice. We can refuse further treatment for an illness, we can refuse to take medication. Those are choices we are allowed. Why are we not permitted a choice about the way we die?

I don't have the money to go to Dignitas in Switzerland. Even if I did, why should I have to travel abroad to die?

I understand and respect that not everyone feels the same as I do, as Noel does. I know some people would not want that choice themselves. That's fine. But please do not prevent or interfere with Noel making his choice. He is making that choice as a rational person, who has considered his situation carefully.

I hope Noel will be allowed his choice. That is a decision solely for the High Court Judges. I'm with Noel, because I believe he has the right to ask for his choice to be respected.

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