This personal story is a very real example of why advance decisions are so important in end of life decision making. If Fraser had an advance decision his health care team would have been legally bound to act on his wishes.
"I won't allow your son to live if he is going to be badly brain damaged."
These were the words which were spoken to me by the Specialist when my son was admitted to a Devon Hospital after a horrific road accident, where he was severely head injured.
He was put on a life support machine- then gradually weaned away from it, and left to live a 'death' in a P.V.S. ( Persistent Vegetative State). He 'lived' for over 4 years in this condition.
The cortex of his brain had been severed in the accident. He died in that road accident in Devon. He 'lived' because he was resuscitated by the paramedics (which, of course, is in their training) to be in that comatose state - artificially fed and watered, incontinent - with no dignity to his young life at the age of 21 yrs. He was 25 when he finally died of pneumonia, never ever acknowledging day or night, never acknowledging the love of his immediate family, his Brother and I.
When I asked how long he could 'live' - "How long is a piece of string?" was the answer. He was young with a strong heart, the finality of his condition struck home. I asked the specialist to withdraw the liquid feed. (Fraser was fed artificially through a tube up his nose, down through his oesophagus and into his stomach). The answer I received was: "Do you want me to murder your son?". I wanted to scream and shout "YES; YES; YES". But I couldn't could I?
Over the years; 4 Christmases; 4 Easters; 4 Birthdays: I died a death too. Slowly and irrevocably Fraser's condition deteriorated, became old, a skeleton lying in a foetal position. An unbelievable specimen of humanity.
I lost Fraser all those years ago in that road accident in Devon. I had to learn to love an emaciated body, a body which wasn't pleasant to be near
It has psychologically damaged me and my second son in ways which cannot be described. Folks think I have healed. They do not know what lies beneath the façade.
What was gained by allowing my son to live? What a waste of resources. Emotional, human and financial. I, his mother just wanted a release for him, for his brother, for me. Was that too much to ask? Can anyone answer the question? Why wasn't my son allowed to die?
The accounts made in the personal stories section of the Dignity in Dying website reflect the views of the authors. The views of Dignity in Dying may differ. For Dignity in Dying's mission please go to: http://www.dignityindying.org.uk/about.html
Should you want to contact any of the people featured in these pages, or wish to share your own story with us, please contact Jo Cartwright:
020 7479 7737 or 07725 433 025