He was suffering from the disease PSP, an innocuous enough string of initials, even innocent sounding. They stand for Progressive Supranuclear Palsy. The first clue is in ‘Palsy.’
It doesn’t take long researching on Google to discover how profoundly unpleasant and it could be argued, down right terrifying this particular disease is. There’s a lot of mention of what can be discovered through autopsy and biopsy of the brain after death. Not the easiest thing to read.
The symptoms lurk in the shadows for the longest time. It took an age for Peter to receive any certainty. He was a commercial pilot amongst other things, so was used to having frequent and thorough medicals.
Degenerative diseases on the whole seem to involve great indignities...and Peter could not countenance such a miserable conclusion to his life. He had always been fit and active, one of life’s ‘do-ers’. He took a considered choice to have a controlled and dignified end.
He had two main concerns; the first and most worrying for him was that he would be well enough to travel and carry out his own wishes. The second was that no-one else would be held responsible. With this in mind he took it on himself to dot every ‘i’ and cross every ‘t’ of the arrangements. All of this without doubt, added to the stress and worry he was already feeling but he was unshakeable in his intent.
His over riding concern was that he might suddenly slip into the full grip of the symptoms. This would mean that he either wouldn’t be able to speak or write and express his intentions on arrival at Dignitas or that he would loose the swallow reflex.
The arrangement is one of assisted dying. It is not one of killing or of suicide at a moment of weakness and depression. Peter was not depressed nor did he want to stop living a full and enriching life. Sadly the latter was no longer an option. The disease had taken that choice away from him. It was more a complete focus and determination not to suffer what he considered to be an existence without dignity or hope of any kind of recovery. All of those who loved him would have nursed and cared for him whatever difficulties that involved. He refused all such offers.
In the week leading up to the fateful day we had a lot of laughter and story telling. In more ways than I can say it was profoundly surreal and extraordinarily loving. A rare and extraordinary privilege.
We walked with Pete in his wheelchair, the many paths along the lake, we drank cool beers and delicious wines. We had fun and laughed and wept.
The last day was as good as ever it could have been.
At the clinic the two people who took care of us were an older man and woman. Both very lovely, kind and caring people who were nothing but sensitive, primarily to Peter. They knew all our names and our relationship to each other. They made emotional and physical space for us. There was no sense of rush. Peter set the pace and was in full control of what happened and when.
He was surrounded by love and held in our arms...what more could any of us wish for.
Now, after paying close attention to the unhappy conclusion to Tony Nicklinson’s life I would like to do as much as I can to shine light on this way of release as an ethical and viable option for people suffering from any of these dreadful complaints that make life unendurable for them.
Surely we must change the law so that desperately sick people do not need to travel to foreign and it has to be said expensive lands, in order to die quietly and with dignity at a time of their choosing. It cost a lot of money it's a fact. That is another issue that should be addressed when we tackle the legalities and logistics of setting up something in the UK.
There was no question of anyone doing this to or for him. Dignitas provided a safe professional place with experienced professionals on hand to help him reach the conclusion he desired so strongly.
This was not euthanasia. No one put a stop to his life which is another thing entirely. Assisted dying allows a person to end their own life within a safe framework. Not an easy option by any means but when the alternative is too horrific for an individual to countenance then it must become a legal way to leave.
