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Assisted dying: It might be too late for me but I want it for those who come after me

Written by on 26 May 2021

Phil Newby, 50, is a father of two from Rutland.

He was diagnosed with motor neurone disease when he was 43. In 2019 he launched a legal battle in the High Court to give him the right to choose an assisted death. Last year that bid was rejected by the Court of Appeal.

Since then his disease has progressed. His lungs are beginning to fail so he needs to use a ventilator for two hours each day. He fears losing the ability to talk.

As a new bill is tabled in the House of Lords, paving the way for a debate in Parliament on the issue, Phil explains why he believes terminally ill, mentally competent adults should have the right to choose when and where they die.

Assisted dying should be an option because it’s inhumane for it not to be an option. Someone in my position has really bleak choices ahead, in fact I have a lack of choice if anything.

I have motor neurone disease which is progressing – thankfully slowly, but it means it’s likely to tail off slowly.

My end is most likely to be lingering and unpleasant, full of anguish and anxiety and physical suffering.

I don’t see why I should have to go through that just because I would need some help from someone in ending my own life because I can’t do it myself.

Phil Newby has motor neurone disease Image: Mr Newby says his end is likely to be ‘lingering and unpleasant’

I think the pandemic itself has brought people unexpectedly closer to death on many occasions, to their own mortality, and people of younger ages in different positions have had to think about the manner and the way they might pass and so I think now, post-pandemic, is perhaps the ideal time for politicians to reflect on what society wants.

Through the pandemic we’ve watched New Zealand change its laws through a referendum and we’ve watched Spain change its law and decriminalise assisted dying.

We have a great legal system, famous around the world, and I don’t see why we can’t get on top of this – there seems no reason at all why we can’t.

Phil Newby has motor neurone disease and is pictured with his wife Charlotte Image: Mr Newby’s lungs are beginning to fail so he needs to use a ventilator for two hours each day

I’ve got no idea if law change could come in time for me. That’s in the lap of the gods.

But it certainly would have a bearing on people who come after me and I think that’s quite important because this situation is a nightmare.

We hope to have a certain amount of dignity and control in our lives and a nasty illness has a way of dehumanising you and I can see that going to a certain point but I don’t want it going any further.

At this stage I can’t make that decision but there will be people who go after me in this position and I would like them to have that right.