Here.
http://edition.cnn.com/2015/10/27/health/girl-chooses-heaven-over-hospital-part-2/
He believes that when Julianna gets another infection, the hospital will likely not be able to save her. "For her, there is no light at the end of the tunnel," he says, his voice trailing off. "She doesn't have a long time to live."
Very sad Rhi, I have every sympathy for this little girl, I just find that nauseous spoon fed trite nonsense from the parents sounds so awful, they might just as well tell her something exactly similar, substituting Legoland in the pace of heaven.
I don't know what would be the best thing to say, it's a difficult call, but I'm certain saying those things to her about heaven is really sickening.
ippy.
I'm going to re-post this piece about the story, which seems extremely apt.
http://www.bioethics.net/2015/10/can-a-5-year-old-refuse-treatment-the-case-of-julianna-snow/particularly:
'The Snows explained death as going to heaven—a place to play and be with deceased relatives. This is in line with most 5-year-olds’ understandings of death. But this is not understanding for informed consent. They have essentially told their child, the choice is between being in the hospital or playing with grandma. Of course she chose heaven, who wouldn’t? The child lacks competency to make this choice, capacity to make this choice, and a sufficient cognitive development to understand.
The parents are painting a coercive picture. What would Julianna say, if death was explained as “ceasing to exist. As sleeping, not dreaming, and never ever waking up. Never ever playing again. Never ever seeing anything or anyone ever again” or as “cold, dark, and lonely with worms gnawing through your body.” A hospital could be described as a place to make you better. These descriptions are equally coercive and because children are impressionable, likely to lead to a different preference by the child.'
Now of course the parents aren't going to, and shouldn't, terrify the poor girl with alternative pictures of what death might be like, but that doesn't change the point that by completely sugar coating the notion of what will happen after death that the child will, of course choose this over something she knows (hospital and invasive therapeutic intervention) which she remembers to be very unpleasant.
And there is also a problem in the way the parent's describe her and later them getting to heaven. Now leaving aside whether any of this is true, they tell her that:
'And it probably means that you will go to heaven by yourself, and Mommy will join you later.'
Note firstly 'probably' - not definitely. But also she says that mommy will join you later. What does that mean to the child. I suspect the child will think that mommy will join her in a few hours or maybe tomorrow. I doubt if the mother said, this morning you are going to grandma's and mommy will join you later, that that would mean maybe in 30 years. No the expectation will surely be in the mind of the child that it will be very soon.
So the parents do seem to have done everything to make heaven attractive in comparison with hospital, so not very surprising that the child choses it. But the big point here (which the article alludes to) is that the parents seem to be absolving themselves of their responsibility to make that choice as the parent of a 4 year old (and a terrible choice it is). Either they are genuinely letting the child chose, which is completely wrong as she doesn't have the capacity to make a choice of that magnitude. Or they are shying away from taking responsibility for their own choice by focusing on what she wants. Either way this isn't great. Again from the article:
'In no way should a five year old be making a choice as to whether to live or die. This is a case where paternalism needs to override the child’s autonomy. If the parents want to decide to pursue no further treatment, they have the right to make that choice. But it needs to be their choice. They can’t avoid guilt by putting moral responsibility on a 5-year-old. At the same time, if they can’t make a choice or don’t want to, this may be a place for the state to step in, as it did for Cassandra C.'
