Several years ago I cared for a patient who was totally paralysed apart from a slight movement in one eyelid.
That was his only way of communicating and in the end was limited to a blink meaning “no” and no movement meaning “yes”. He could not directly tell us if he was in pain, hungry, happy or sad. He could not, of course, cry, laugh or scream. His body was perfectly still apart from the ventilator that kept him alive. It was hard to remember that he once smiled, even harder to remember that he once walked and ran, and fed himself. He could no longer tell us if his favourite music was still his favourite music or if he was not enjoying the television programme that he was watching, he could not flick the channels or ask for them to be flicked. If he had a girlfriend once there was no-one then.
He was “locked in”. Inside his head he could think and dream, he was certainly totally aware how difficult his condition was. He had an ever-present team of carers who never left his side. Family life continued around him and he was still very much a part of that caring family, for caring they were, but he was also apart from them too.
Two years before, he was totally well; over the course of those two years he lost everything except the movement of that one eyelid. If he had not been ventilated in an emergency he would have died before reaching this stage.
I wonder what you are thinking as you read this. Is this life? Would you want to live like this? However much you loved someone would you want them to live like this?
Please do not rush your judgement. For some time my patient adapted and enjoyed his new and different life, especially when communication was easier – he could, for a time, communicate via one of his toes that was attached to a computer. His carers and his family were immense; I think that is the word that I would use to describe them. They made me feel incredibly humble.
But the time came when he asked for his ventilator to be turned off. Or to be more precise when he could no longer communicate, and had lost the movement of that one eyelid, he wanted to die.
We, the team that looked after him, his family and his carers took the greatest possible care to ensure that these were his wishes. I sought independent medical advice and finally legal advice. One set of lawyers said that if I turned his ventilator off I would be murdering him. Another lawyer said that if I did not stop ventilation I could be charged with assault, that is, carrying on with a treatment that my patient no longer wanted.
We went to the High Court where the judge decided that I should carry out my patient’s wishes.
This week in the High Court another man who is totally paralysed apart from his ability to move his eyelids is requesting that doctors should be able to kill him without fear of prosecution when he can no longer bear to be alive. I have used the word kill even though it is an emotive word because that is what a doctor would have to do. I understand that he has been in his present state for over five years. He is “locked in”.
There are some similarities in the two cases; the most important is, of course, being locked in and of similar importance their inability to end their own lives other than by refusing nutrition or treatment for infections. Assisted suicide was not for my patient, and is not for this man an option. Neither could or can take medication that would kill them because that is physically impossible.
But there is one big difference, my patient had a ventilator that could be turned off, the man going to the High Court is not ventilated, can breathe on his own and there is nothing to turn off.
Doctors would need to give him drugs to end his life. By chance and circumstance the law was comfortable with my case; by circumstance the law is profoundly uncomfortable with the present case before them.
My patient died suddenly one day before I needed to carry out his request.
Would I have done it? Yes, I would, with a profound sense of love and respect, but would I carry out the request of the other man, with all its implications for other people, with the fear of opening up the floodgates of euthanasia?
If I did, would it be with love or foolishness? To leave him as he is with all the skills that palliative care could offer, would that be an act of love – leaving him as he is for the greater good – or would it be an act that can only be described as inhumane?
No-one has said that being a human is easy, making difficult decisions does not necessarily leave you feeling comfortable and acting with love in these extreme and rare circumstances is surely not something that the law can decide.