Readers here may recall the infamous Charlie Gard case earlier this year. Charlie was a terminally ill baby with a progressive and terminal genetic disease. Charlie’s parents wanted to take their boy to a specialist in the US, but was refused permission by the hospital, later supported by a judge. Further, the hospital obtained a ruling that Charlie should be taken off life support, an imposition to which the parents eventually agreed after the US doctor said that with the passage of time, he could no longer help.
Well, it is happening again–except in this case the baby isn’t terminally ill but has been unconscious for a year. Moreover, as I wrote here previously, there isn’t even a diagnosis as to the cause.
An Italian children’ hospital has offered to take the child as a patient for further inquiries and treatment. But the UK hospital administration and doctors are not only saying NO, but as in the Charlie Gard case, also seeking a court order allowing them to withdraw life-sustaining treatment. From the Echo story:
Ader Hey Children’s Hospital has applied to the High Court to switch off life support for a baby in a coma, the ECHO understands.
Alfie Evans’s family said they were now in a “living nightmare” after the hospital said they had exhausted all options in trying to diagnose and treat his mystery brain condition.
It comes shortly after his parents Thomas Evans and Kate James, both 20, said that months of searching they had finally found a hospital abroad that was willing to take him;
But a letter to them, seen by the ECHO, shows Alder Hey are opposing the move to an Italian children’s hospital – and are stepping up the battle over Alfie’s life by taking the matter to court.
Let us focus on the wrongness of this.
- Alfie has not been diagnosed;
- The baby is not terminally ill in the sense that Charlie Gard was, but in a coma;
- The family has found another hospital willing to continue care, or at least continue to seek a diagnosis;
- If Alfie is unconscious, he is not suffering;
- The hospital, in essence, wants a court to declare that dying now is better than being severely cognitively disabled for an indeterminate period.
- By resisting the transfer, the hospital administration and doctors are essentially declaring that they do not want the child to have any chance of surviving.
The UK’s laws are different than here in the USA. The technocracy there has greater power, and parents have fewer rights over their children.
In fact, I think power is what this and the Charlie Gard case are ultimately all about. Otherwise, why not allow the parents to try other potential avenues of care? Why not give Alfie a shot?
The fact that refusal of transfer would probably not happen here, should not make us complacent. We have our own medical technocrats who want greater power over patient care or withdrawal thereof.
P.S. Alfie’s parents have established “Alfie’s Army” Facebook Page for those who may be interested.