But (if I'm understanding the details correctly) in this case I think the tracheotomy would be considered "ordinary care." It's a simple, routine way to help a patient breathe. "Invasive"? Yes, but only very slightly. Not expensive. And the little guy would go home, which means the care would be assumed by his parents, significantly cheaper and simpler than keeping him in the hospital.
Plus it would show a decent respect for his grieving parents' wish that they be allowed to spend a little time (more than minutes) with their dying son at ome.
And others are willing to pay ALL the expenses!! So what's the problem? Looks like a stone cold bureaucratic power trip to me. "We have ruled! Quod scripsit, scripsit!"
Yes, I think that the problem here is that the bureaucracy has declared itself the sole custodian of the child’s health care and even though it will cost them nothing, they are unwilling to give up that control. I cannot imagine why.