https://boards.hellobee.com/ Pregnancy, Baby and Parenting blog, by Hellobee en Sat, 02 May 2026 08:21:20 +0000 https://boards.hellobee.com/topic/end-of-life-decisions-made-by-children#post-2336918 Wed, 28 Oct 2015 11:13:55 +0000 Jess1483 2336918@https://boards.hellobee.com/ <p>@littlebug: Oh man, I can't imagine how hard that would be. I commend you greatly. It's one thing for "bioethicists on high" to decree things to be true and a completely different thing for people on the ground to have to make those decisions about real people. And yes on living wills! </p> <p>I think the reality of the situation is probably more like what you say, and it's likely the CNN article that skews things. At the same time, I agree with @Applesandbananas: that it sounds like they're having their daughter choose between the hospital and party. I also think you're right that they were leaning this way and that her statements gave them "permission," but that makes me even more leary, because if they were, I imagine there were some leading conversations/questions. But at the same time, I think they should be making their daughter feel comfortable about her impending death, and for believers, Heaven is a great way to do that. I can't imagine what it would really be like to have these conversations with a 4 year-old. Totally heartbreaking. </p> https://boards.hellobee.com/topic/end-of-life-decisions-made-by-children#post-2336904 Wed, 28 Oct 2015 11:04:40 +0000 littlebug 2336904@https://boards.hellobee.com/ <p>@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. </p> <p>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. </p> <p>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! </p> https://boards.hellobee.com/topic/end-of-life-decisions-made-by-children#post-2336886 Wed, 28 Oct 2015 10:53:37 +0000 Applesandbananas 2336886@https://boards.hellobee.com/ <p>@catomd00: I agree with bringing in professional help in talking to her about her options. It sounded like, and I say this as a Catholic, her parents gave her the choice between the hospital and a party. Of course she would choose the party. I would too. And I do believe in God and Heaven and that it's wonderful, but I just would struggle as a parent in explaining both to her fairly, without having her feel pressured one way or having my presentation be unfairly biased. I don't think their intentions were to sway her, or to unfairly present the options. I think they've done an amazing job in a heartbreaking situation and should be commended for being so thoughtful and compassionate. If I were ever in that kind of situation, I think I'd bring in a professional who specialized in child psychology or similar, for my own peace of mind, that my child's decision was hers. </p> https://boards.hellobee.com/topic/end-of-life-decisions-made-by-children#post-2336872 Wed, 28 Oct 2015 10:47:44 +0000 Jess1483 2336872@https://boards.hellobee.com/ <p>@honeybear: Okay, here goes :)</p> <p>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.</p> <p>(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.</p> <p>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. </p> <p>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.</p> <p>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. </p> https://boards.hellobee.com/topic/end-of-life-decisions-made-by-children#post-2336627 Wed, 28 Oct 2015 09:01:31 +0000 littlebug 2336627@https://boards.hellobee.com/ <p>I fully support the parents here. Even if this little girl did go back to the hospital and endured all the awful things she'd have to endure, it is not guaranteed to extend her life, and it is almost entirely guaranteed that it would decrease her quality of life. I think the fact that they have been having this conversation with their daughter should be commended. My heart goes out to them and their families. </p> https://boards.hellobee.com/topic/end-of-life-decisions-made-by-children#post-2336551 Wed, 28 Oct 2015 08:22:10 +0000 erinbaderin 2336551@https://boards.hellobee.com/ <p>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. </p> https://boards.hellobee.com/topic/end-of-life-decisions-made-by-children#post-2336516 Wed, 28 Oct 2015 07:45:36 +0000 LuLu Mom 2336516@https://boards.hellobee.com/ <p>I'm so conflicted on this and I have no idea what I would do. I think 4 years seems so young to make this decision, however I think I would listen to my child adn use that in consideration with our doctor's advice to make the final decision. We are Christians and would use our faith to help guide us as well. I feel for this girl and her family, because it sounds like regardless her quality of life would not be great, and that is no way for a vibrant little girl to live in my opinion, this would be hard for me to witness. I would rather my children be pain free than to suffer by living on a machine. As a parent you don't want to let go but i do believe in some cases it is necessary for the child's sake. </p> https://boards.hellobee.com/topic/end-of-life-decisions-made-by-children#post-2336513 Wed, 28 Oct 2015 07:43:23 +0000 lovehoneybee 2336513@https://boards.hellobee.com/ <p>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. </p> <p>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). </p> <p>Such a terribly tragic situation. Losing my child is my greatest fear, and I feel so much for the family. </p> https://boards.hellobee.com/topic/end-of-life-decisions-made-by-children#post-2336509 Wed, 28 Oct 2015 07:38:02 +0000 honeybear 2336509@https://boards.hellobee.com/ <p>@Jess1483: Thanks! I look forward to your thoughts. I understand that bioethics doesn't provide an answer, but I assume that it does provide a framework for thinking about these things, and I don't think that was explored (like, at all) in the article. (Which I think is a major shortcoming in the reporting, but that's a matter of journalistic ethics. ;) ) </p> https://boards.hellobee.com/topic/end-of-life-decisions-made-by-children#post-2336502 Wed, 28 Oct 2015 07:31:00 +0000 Jess1483 2336502@https://boards.hellobee.com/ <p>@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. </p> <p>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. </p> https://boards.hellobee.com/topic/end-of-life-decisions-made-by-children#post-2336488 Wed, 28 Oct 2015 07:15:21 +0000 honeybear 2336488@https://boards.hellobee.com/ <p>@Jess1483: To be honest, the bioethicist's comments piqued me, but I'm curious about his position, which I don't think was fully developed in the story. He didn't say that there shouldn't be a <i>policy</i> of allowing children a say in their own treatment, he said that <i>this family</i> made the wrong decision. </p> <p>I am genuinely curious why it is "wrong" as a matter of bioethics to allow a child with a imminently and unalterably terminal condition to express a preference for his or her care and to take that into account in deciding on the type of care he or she will receive. Who *should* make the decision? (Legally, it's her parents' choice, correct? So who apart from them should care if they choose to take their daughter's wishes into account? Why would it be okay for them to say "I don't want my daughter to die intubated and in a hospital," but not okay for them to give her that choice, when there is one?) </p> <p>Also, this clearly isn't a case of assisted suicide, so I'm not clear on why the same considerations should apply. The family has decided not to pursue further non-palliative treatment. There are no steps being undertaken to hasten the little girl's death. (In fact, if catching pneumonia is likely to kill her, one could argue that they are actively preventing her death by keeping her at home. Hospitals are hardly sterile environments.) </p> <p>To be candid, I think that the suggestion that it is somehow irresponsible to consider a child's wishes on matters of the utmost importance to them is outrageous. However, I would like to understand why there might be a different answer under bioethics. </p> https://boards.hellobee.com/topic/end-of-life-decisions-made-by-children#post-2336485 Wed, 28 Oct 2015 07:08:33 +0000 lamariniere 2336485@https://boards.hellobee.com/ <p>@mrsjyw: exactly my feelings. </p> <p>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." </p> https://boards.hellobee.com/topic/end-of-life-decisions-made-by-children#post-2336442 Wed, 28 Oct 2015 05:43:59 +0000 Mrs. Lemon-Lime 2336442@https://boards.hellobee.com/ <p>I commend the parents for letting their child have a say in her care and her destiny. Only the little girl knows how much pain and hurt she feels. I don't think end of life decisions should always be in the hands of children, but their feelings and opinions on the course of treatment should be considered. The way heaven has been taught by the parents it sounds like a perfect alternative to treatment. I'm not sure I could sell the concept of heaven quite like that, but it sure is comforting. </p> https://boards.hellobee.com/topic/end-of-life-decisions-made-by-children#post-2336351 Tue, 27 Oct 2015 22:11:10 +0000 Jess1483 2336351@https://boards.hellobee.com/ <p>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). </p> <p>As a parent, I'd feel the same way as these parents, and hope I'd do the same for my child. </p> https://boards.hellobee.com/topic/end-of-life-decisions-made-by-children#post-2336348 Tue, 27 Oct 2015 22:06:33 +0000 mrsjyw 2336348@https://boards.hellobee.com/ <p>😭🙏🏻 I wholeheartedly support the parents decision and would hope is have the strength to make the same decision if I were to be in their shoes. What a brave little girl </p> https://boards.hellobee.com/topic/end-of-life-decisions-made-by-children#post-2336336 Tue, 27 Oct 2015 21:12:20 +0000 alphagam84 2336336@https://boards.hellobee.com/ <p>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. </p> https://boards.hellobee.com/topic/end-of-life-decisions-made-by-children#post-2336326 Tue, 27 Oct 2015 21:06:12 +0000 catomd00 2336326@https://boards.hellobee.com/ <p>So heartbreaking. I don't think anyone can say for sure what they would do in this situation, however I am a strong believer in respecting my child's wishes for their life and body from birth. I would seek out professional help in talking through the options with my child. Ultimately, if they did not want more treatment, as hard as it would be for me to not exhaust every possible option, I would want to respect their wishes. I hope I am never in this position. </p> https://boards.hellobee.com/topic/end-of-life-decisions-made-by-children#post-2336299 Tue, 27 Oct 2015 20:30:00 +0000 MrsYellowJacket 2336299@https://boards.hellobee.com/ <p>I have nothing to comment except that I'm bawling uncontrollably at this article. My thoughts are with the family... </p> https://boards.hellobee.com/topic/end-of-life-decisions-made-by-children#post-2336273 Tue, 27 Oct 2015 20:11:00 +0000 honeybear 2336273@https://boards.hellobee.com/ <p>I have no issue with her being part of the decision to go home. The doctors can't help her get better. The terrible choice she has to make is where to die--and she chose home. I have far less experience in hospitals than she does, but I fully understand that; I hope to die at home rather than in a hospital, too. </p> https://boards.hellobee.com/topic/end-of-life-decisions-made-by-children#post-2336236 Tue, 27 Oct 2015 19:49:32 +0000 Torchwood 2336236@https://boards.hellobee.com/ <p>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....? </p> https://boards.hellobee.com/topic/end-of-life-decisions-made-by-children#post-2336166 Tue, 27 Oct 2015 18:50:25 +0000 Synchronicity 2336166@https://boards.hellobee.com/ <p>I think it's so important to remember that she will likely not live for very long, regardless of whether she is in the hospital or not . This poor little girl is very sick and will only get sicker... If I were her mother, I would do everything in my power to make sure that she suffered as little as possible, and that she spent the rest of her life in a place where she feels safe and happy and not frightened and in pain. I understand their position. </p> https://boards.hellobee.com/topic/end-of-life-decisions-made-by-children#post-2336148 Tue, 27 Oct 2015 18:35:54 +0000 keepcalmcarrie 2336148@https://boards.hellobee.com/ <p>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. </p> https://boards.hellobee.com/topic/end-of-life-decisions-made-by-children#post-2336112 Tue, 27 Oct 2015 18:16:31 +0000 Meow 2336112@https://boards.hellobee.com/ <p>I also read this article today and followed the link to the mom's blog. I can see how to some, it might make no sense to allow a young child to make that decision. The family has been through so much and they've come to terms with the fact that she is going to die. I think their reasoning is why put the child through unnecessary pain and suffering at the hospital without hope of a cure or even hope of prolonging life for a significant amount of time. </p> https://boards.hellobee.com/topic/end-of-life-decisions-made-by-children#post-2336083 Tue, 27 Oct 2015 17:48:31 +0000 MsMini 2336083@https://boards.hellobee.com/ <p>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? </p> https://boards.hellobee.com/topic/end-of-life-decisions-made-by-children#post-2336061 Tue, 27 Oct 2015 17:20:13 +0000 Raindrop 2336061@https://boards.hellobee.com/ <p>That was super sad!!! All I want is for that little girl to be well.</p> <p>I do believe that kids are smarter than we give them credit. </p> <p>4/5 year old girl saying she wants to stay home rather than go to the hospital is a tough call for parents, because staying at home likely means death.</p> <p>I think for me, I would just try my best to save my child's life till they are 18 years old and they can decide then what they want to do. This is purely from an outside standpoint with no experience in something like this. </p> https://boards.hellobee.com/topic/end-of-life-decisions-made-by-children#post-2336045 Tue, 27 Oct 2015 17:05:47 +0000 coopsmama 2336045@https://boards.hellobee.com/ <p>I just read this article: <a href="http://www.cnn.com/2015/10/27/health/girl-chooses-heaven-over-hospital-part-2/index.html" rel="nofollow">http://www.cnn.com/2015/10/27/health/girl-chooses-heaven-over-hospital-part-2/index.html</a></p> <p>I have so many thoughts/emotions about this but I'm just not sure where to start. Wow! I don't know what I would do in their position and can't judge them at all. But it does bring up questions for me in thinking what I would do if I were them.</p> <p>What do you all think? </p>