This is a follow-up of the Charlie Gard case in the UK. In a hearing last week, Charlies parents accepted that there is no treatment that will help their little boy. It also came to light that the Dr who had offered Charlie the treatment in the States had neither seen nor examined Charlie or his scans and he also had a commercial interest in the treatment being offered. It was highlighted in my previous post that this was an experimental treatment, untested on humans and animals. The story has not had a conclusion yet, now the family and the hospital where Charlie is, Great Ormond Street Hospital in London are in conflict with his end of life care.
Charlie’s parents want to take him home on his ventilator for a few days to weeks before the ventilator is withdrawn. I will talk more about this later. Great Ormond Street says that this is logistically and ethically impossible. They agree that Charlie can be transferred to a hospice and once there he can be extubated and allowed to pass away peacefully. Charlie’s parents do not want this to occur.
It is at this point we can think about at what point are Charlies needs being met, His parents want him to experience a life outside of the hospital. But Charlie cannot experience this. He is not conscious and there is no evidence he can experience any joy in his being. The parents understandably want experiences for Charlie, but these are their wants and needs, not Charlies.
The court is trying to find a way through this minefield to act in Charlie’s best interests but the parents, with all of the love of parents cannot see this way. Charlie is on a ventilator with severe and irreversible brain damage, he is probably blind, he cannot eat or drink and he is nursed on this ventilator. This is not a pleasant sensory experience. Its three months since the court made its first order and both Charlie and his parents are in a living hell.
The case is now in the public eye and everybody now has an opinion on this case. A futile opinion. Charlie will die and his parents will probably be affected for the rest of their life. They have a love for their beautiful boy that every parent will understand, but in their love they cannot see reason and they are now prolonging the inevitable. Sadly the publicity that has occurred because of this case has placed Great Ormond St Hospital in the spotlight and unfairly criticised this hospital and the staff who work there. Its collateral damage from this case. The parents have until noon on Thursday (London time) to make arrangements for Charlie’s end of life care and if they cannot come up with satisfactory arrangements the court will make a ruling to move Charlie to the hospice where he will be extubated.
It’s rare that ethical dilemmas reach this point, the issues are usually resolved much earlier, but we have a very emotive situation here and a little boy at the centre of the dilemma with no voice of his own.
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