Why I'm still fighting for my dad Tony Nicklinson's last wish

http://www.theguardian.com/commentisfree/2013/dec/27/tony-nicklinson-right-to-die

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For most families, December will have been consumed with planning for Christmas and New Year. For us Nicklinsons, something else has loomed large: the fact that we are taking our right to die battle to the supreme court.

On the 16th, we sat in front of 9 of the UK's most senior judges and argued why people with severe disabilities should be allowed an assisted death but <em>only</em> if they have the capacity to make a clear and informed decision and <em>only</em> if they request it themselves.

It comes down to self-determination and autonomy. It is about giving this very small group of people the right to choose whether they live or die. This right to choose is one the able-bodied currently have, but that some sections of society are denied because they need a little extra help.

People like Paul Lamb and Tony Nicklinson, my dad.

In June 2005 dad suffered a brain-stem stroke so devastating that it left him paralysed from the neck down and robbed him of his speech. His mind was as sharp as a knife, but he had locked-in syndrome, which has been described as the closest thing to being buried alive.

Dad tried to accept his disabilities and enjoy what little pleasure he could find but ultimately he found life intolerable. It did not take long for dad to request the inevitable – help to die. In August 2012, the high court ruled that a doctor could not help dad take his life and that it was a matter for parliament to decide.

Ironically, pneumonia killed dad anyway just six days later. Well, pneumonia is listed on the death certificate but I still maintain that dad died of a broken heart, having been so horrifically let down by an archaic legal system and cowardly politicians.

After much soul-searching, we decided to continue our legal case, not just to honour dad's memory but because it is too important an issue to drop. We have received so much public support that we could not let it go. With the right safeguards in place, surely it should be a basic human right to have a say in the time and manner of our own death? What kind of heartless society would dictate that dad, Paul and anyone else must stay alive despite their pain, and not even attempt to tackle the issue?

Assisted dying for the terminally and non-terminally ill is of course an incredibly contentious issue and most people have an opinion on it. Some bring morality into the argument. But is morality not subjective? We all process information and form opinions using different filters – for some these might be religious or political views or the way the media present the issue. I am not a lawyer or an ethicist, but I would question the way some have attempted to use their own ideas of morality to sway this debate.

This time of year is always tough for people who have lost loved ones. I do think about Dad a little more often in December and sometimes I miss him so much that my bones hurt. But I would not wish for him to be alive today, not unless he wanted to be.

When dad was diagnosed with pneumonia, he actively refused treatment and subsequently died; it was not the death he wanted but he saw an opportunity to escape and took it. I hope one day we can do for Paul what we could not do for dad.

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