Tuesday, July 04, 2017

Poor decisions - parents and courts

I've said many times here that I am not in favour of euthanasia laws, but I do get very irritated by reflexive conservative Christian attitudes to prolonging life by artificial means in cases where the doctors want to withdraw life support, and parents or relatives disagree.

Why do conservatives always assume that the parents know what is best?

The irony in the current Baby Gard case (which Trump has opportunistically weighed in on - groan), is that the US neurologist who has offered to try an experimental treatment is explicitly saying that it would be a "treatment, not a cure", and at most may achieve this:
He said the therapy, which would be tried for six months, would provide a "small chance" of a meaningful improvement in Charlie's brain function.

"[Charlie] may be able to interact. To smile. To look at objects," he said.
Charlie at the moment is (apparently) completely reliant on ventilation and a feeding tube, and is not conscious.   Given that I'm sure both ventilation and feeding tubes are distressing if you are awake, at least he is not suffering.   (True, a young, awake baby would not understand what is happening, but the physical sensation of having feeding tube and ventilation is presumably detectable by a conscious baby, and is surely not pleasant.)

It would seem that, at best, the neurologist is suggesting that he might be improved enough to gain consciousness, but if that happens while he is still reliant on a feeding tube and ventilator, that is where the true suffering would begin!

Don't the parents recognise that risk?

The mother (and her supporters) have been quoted as saying that even if this treatment doesn't work, it's worth the experiment because that is how effective treatments might be found.   I can see the "in principle" reasoning for that - but no acknowledgement that a partially successful treatment sounds likely to increase this baby's suffering before his ultimate death. And,  it very much seems that there is no real medical opinion that there will ever be a cure for mitochondrial disease, given the problem is at the cellular level.   

Look,  these cases are tragic and he is a really beautiful baby, but the fact remains that highly emotional parents, and conservative Christians who believe in miracles, may well not be capable of making the best decisions in cases like this.   There is a strong case to be made that it is the English doctors and the judges backing them who are the ones being more compassionate here.


Anonymous said...

But it's not up to the court to decide. Also the parents were paying for it with private assistance, as well as out of their own pocket. In these circumstances particularly when it's not costing the state anything, it should always be the family's decision.

It's a very cute little kid too.

Steve said...

If a parent is being irrational, I have no problem with a court deciding.

The only basis the parents have for arguing that they are being rational is the fact that one American neurologist wants to experiment on their child. However, as I have argued, there is good reason to believe the "best" outcome of that is only going to be to increase the suffering of the child. I think that the parents are too blinded by emotion to see that.

In another example of their emotional state, I read that they want the child returned home to die. Given that this would involve moving him with ventilation in place, and he has not been aware of his surroundings for (i think) months now, what difference would it, in reality, make? It's going to be terrible letting him go regardless of the room it's happening in, but I'm sure hospitals can arrange matters in an sensitive and caring way, as they pretty much do on a daily basis.

I don't want to sound harsh, but the whole point of my post is that sometimes parents or other relatives can't be trusted to make compassionate decisions...