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Such a sad article, but I really admire these parents for giving their child a voice. This isn't a little girl who has any real chance at a cure for her condition, and there is a very real chance that despite whatever painful, and scary treatments they can give her she would not leave the hospital if she were to get another infection. In that case, there is no wrong choice, in my opinion, so what is the harm in giving a child, who has probably never had any medical autonomy, the chance to weigh in on her treatment or palliative plan?

It is heartbreaking and unfathomable to me, having to make this decision, but I hope and believe I would make the same choice as these parents. If there is no hope of recovery for my child, if the treatments are painful and scary and pulling him back from death's door, if his doctors and nurses support it, and if it's what he truly understands and wants (and no one can know better than these parents that this is what their little girl wants) then yes, I would keep my child at home. When I die, I hope I have the chance to do it in the comfort of familiar surroundings with my family by my side.

In this situation, where death is inevitable, I think it's perfectly reasonable to let her decide. As an atheist though, I can't help but be horrified by the heaven aspect, but at the same time if they're wrong she'll never know. And it sounds like keeping her home is what I would choose anyway, so....?

I have nothing to comment except that I'm bawling uncontrollably at this article. My thoughts are with the family...

What a sad situation. I support the parents and their decision. I think I would do the same thing, there's no quality of life for that little girl and she will never get better.

As someone who did my graduate degree in bioethics, I see all sorts of things wrong with a policy that would allow children to have substantial say in end-of-life decisions (even with assisted suicide, an evaluation of the mental capacity of the one requesting AS is required).

As a parent, I'd feel the same way as these parents, and hope I'd do the same for my child.

@mrsjyw: exactly my feelings.

I have strong feelings in favor of right to die/dying with dignity issues and, while I'm not religious, I feel like these parents have prepared their daughter in the most appropriate way that is right for their family. And to quote Albus Dumbledore "After all, to the well-organized mind, death is but the next great adventure."

@honeybear: yeah, sorry. I didn't have much time last night, and just kind of threw that out there (I also wasn't sure anyone would care...) When I'm at work I'll write and answer your questions. To be clear, "bioethics" can't have a stand on anything, that's like saying "politics says..." But there are some generally agreed upon standards, and I imagine he sees some conflicts between those principles and this family's decision. Art Caplan is a leader in the field, but I definitely disagree with him in a lot of places, and probably would here given the tiny amount of information in the article.

You have some excellent questions about the difference between hastening death and refusing further curative measures. I studied this quite a bit and struggle with the distinction for a few reasons. I'll write more later on that. When I'm not on my phone.

I take issues with parents who deny their children life-saving care because of their religious beliefs. This is not the case here. They aren't letting her choose between having a scary, painful procedure that will save her life or staying home and dying and going to heaven. This poor child is going to die, sooner rather than later, and they are letting her decide where she'll be. She may be too young to understand the finality of death, but she's old enough to know what pain she's in, and whether she understands the finality of death or not it's her reality, just a cold away.

I don't believe in god or heaven, but I wholeheartedly support how they are handling it. If it was my child I hope I would have the strength to do the same...whatever I can do to ease the pain, whether it be making them comfortable at home or telling them anything that might make death less scary (angels, unicorns, whatever it would take).

Such a terribly tragic situation. Losing my child is my greatest fear, and I feel so much for the family.

Ugh, this made me cry. What a terrible heartbreaking situation for anybody to have to be in. That being said, to me, it seems obvious that they're making the right choice, both by letting her have a say (and what a relief it must be to that poor child, finally getting to have a say in something after being subjected to so many painful procedures that she had no control over) and letting her stay home. I would have a lot more conflict if they could help her in any meaningful way, or even extend her life by, say, a year, but it sounds as though that is not the situation here, and I don't think I could bear to see my baby go through that much pain and suffering so that I could keep them around for a little bit longer.

@honeybear: Okay, here goes

There are four guiding principles of bioethics, put forth by two people commonly considered the "founders" of bioethics, Tom Beauchamp and Jacob Childress. They are beneficence (do good), nonmaleficence (don't do harm), autonomy, and justice. You can use these principles (presuming you agree with them, which generally bioethicists do), to argue your own point. I can easily in this case see both sides of the argument, and could support it using the principles. It's more cut-and-dried in other cases. For example, euthanasia is generally considered in contradiction with the "nonmaleficence" principle, because you're directly causing harm (I can argue the other side of that one, and probably would in certain circumstances, but that's another conversation.) I would say that both beneficence and nonmaleficence in this case could easily be argued to reach the family's point. The harder ones are autonomy and justice. In general, one must be deemed "competent" to have autonomy. One must understand all of the options and the potential outcome of those options to be considered competent. If the patient themselves is not competent, then generally "substituted judgment" is used in its place by someone either pre-appointed (in the case of a once-competent adult), or by those who are closest to the situation (and legally in this case, the parents, although doctors can and have taken cases like this to ethics committees if they disagree with the family's assessment). Generally, young children are not deemed competent, and I believe this is where Caplan is concerned (though I could be wrong.) While the 4 year-old may have a vague understanding of death, and certainly understands her own pain and limitations, I believe he would argue that she can't possibly be considered "competent." I think his discomfort probably lies in the parents' assertion that the young girl is the one making the decision (and honestly, that's where my discomfort is as well, although ultimately I agree with the parents' decision.) It seems as if they are saying "it's what she wants, so it's what we're doing," which is certainly not consistent with the principle of autonomy since she can't be considered medically competent.

(As an aside, this is what my point about assisted suicide touched on. In general, we presume adults are competent unless deemed otherwise. We do not presume children competent in the same way, and in the case of assisted suicide, we still require a test of competence. I agree that this is not a case of assisted suicide, but I think it speaks to the same concept--feeling like you have control at the end of life. Most people who legally obtain a life-ending prescription don't take it--they simply want the option to be in control of their final days. I think that's similar to this case--Julianna and her family want the option to be in control in her final days, to not be fighting with every last bit of time and energy to eek out a few more minutes of painful life. I think generally the distinction between, as bioethicists usually term it, killing and letting die, is a lot more blurry than people think (I even wrote a paper on it). I think it's a disservice to put too much stock in the distinction between the two.

I think the principle of justice also comes into play, too. It's a pretty complicated principle, but one of its facets is to "treat similar cases similarly." This is where I'm most troubled, because perhaps this 4 year-old in this case is capable of helping to make this decision based on her prognosis, but this is what I meant by "a policy" (which I agree was not at all what Caplan was talking about.) I think generally consulting a 4 year-old on end-of-life options would be a particularly dangerous policy.

I think I (and arguably perhaps Caplan) would argue that it is perfectly acceptable for the parents to make this decision, but that they--and we--should see it as that--the parents' decision. They can (and should) certainly take their daughter's feelings and concerns into consideration (here I probably differ with Caplan), but they also need to own the decision as their own. It's completely possible that they do, and it's CNN's spin on the story that puts it really on their daughter, but that is where my hesitation lies.

I hope that answers a bit. This is really complicated stuff, and like I said, I ultimately come down on the parents' side, both in their right to make this decision and in the decision itself, but I also think that the way they've presented the decision as their daughter's (and again, that could be CNN's fault) is concerning and possibly dangerous.

@Jess1483: My take on this whole thing is that the parents discussed this with Julianna and are taking her wishes into consideration, but ultimately the decision was theirs. But perhaps that's just because I'm projecting my own inability to "trust" that a 4 year old could *really* make this decision. While she may have the capacity to make a decision, I highly doubt she really has the deep understanding of what it all means. Sure, she understands that she will die and "leave this Earth," as her mother words it, but I think very few 4 years old really get what that means.

To me, the parents were already leaning in this direction, and by her saying she wants to stay home and not go back to the hospital, they feel as though she's given them permission to make that decision.

I'm a hospital social worker, so we deal with end of life ethical questions a lot. We've consulted our ethics committee on multiple occasions. These discussions and decisions are never easy. That's why I always strongly encourage adults to have living wills in place, so there is no ambiguity for their loved ones!