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Parents to 5 year old: "hospital or heaven?"


pnwgypsy

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thats a crazy situation suffer and live longer or suffer and maybe die early. but really is this any different then apposing assisted suicide like most churches do?

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Portland Oregon parents have apparently given their daughter with a neurodegenerative disorder the option of going to the hospital or heaven should she get sick again.

 

http://www.foxnews.com/health/2015/10/27/oregon-family-lets-dying-5-year-old-daughter-decide-heaven-or-hospital/

 

I agree with the bioethicist who has misgivings about her age/developmental stage. If Julianna were, say, 12 or 13 years old and had a full understanding of death and what her choice would entail, I'd say that her parents were doing a good thing by letting her have more autonomy over her medical choices and accepting her wishes to discontinue invasive treatments. But I don't think a 5-year-old has the capacity to understand the gravity of such a choice.

I think that we need to have a less negative relationship with death, I think that we need to respect people's medical autonomy and respect people's conscious decisions not to continue extraordinary measures or painful, invasive treatments that might not do much good (though I do worry about people not fully able to communicate their wishes being pressured into assisted suicide or requesting DNR/allow natural death by family members who want to be divested of the burden of caring for them), but I don't know if a five-year-old has the capacity to make an informed choice of this magnitude. If I were in the mom's shoes, I'd be very, very sure to explain what her choice would mean, what would happen if she got really sick again and didn't want to go to the hospital, and I'd take her to the doctor to discuss palliative care options that we could do if she really, really didn't want any more invasive treatment, mostly because dying of pneumonia at home with no medical interventions sounds like a really shit way to go.

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I think it can be okay to stop treatment if the kid can't handle it anymore, but the way it's worded does give me pause:

"There, they said, she would be able to eat without a tube, play and run— everyday activities other kids get to engage in but ones that Charcot-Marie-Tooth disease, or CMT, has robbed from Julianna."

I just doubt a 5-year-old can really understand the concept of Heaven. Of course it must sound great for her to be able to run and play, which makes me think that she might not be getting a balanced view of her choices

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I don't know if I agree with this, but I don't think that this is awful parenting.

The child has terminal illness, her parents have engaged appropriately with health care and have come to the conclusion alongside staff that it may not be kind to push her further.

They are in the horrible situation of having to contemplate their 5 year old's death and having to decide what to say to her.

They have as parents (with the agreement of secular medics) made the decision that they can palliate her.  Finding a way to talk to her about what she wants and gain her views is nice.  Because if she was adamant that she wanted to stay here longer and wanted to see if the nasty medical stuff could get her over her next illness then maybe she can choose to do that.  Meanwhile explaining death to her in a positive way which she has an chance of understanding is their attempt at trying to be honest.

Personally I don't agree with the portrayal of heaven, but explaining it as a pain free place where she will be happy and can play without tubes is likely something a five year old can understand.  Its also more positive than the atheist, you will cease to exist thing (which I personally find more likely).  That belief in heaven won't hurt her, but may bring her comfort and help her understand on some level what's going on.

I'm normally the first one to jump in, in opposition to parental beliefs interacting with children's medical care.  I don't think I can in this instance.  Its an awful situation to be in, an those parents are trying to have an awful conversation with their child, I don't think that how they are doing it will cause harm.

 

[side note: there's no be good and pray to get into heaven from these parents, they're saying that she will, no matter what go heaven and they get extra points for that]

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I read the mother's second article and I felt like it helped me understand their situation better: http://themighty.com/2015/06/how-our-daughter-helps-us-face-our-greatest-fear/

I think the way the headline was worded, as the parents giving her a choice between hospital and heaven, was misleading. It sounds like death is an inevitability for Julianna, sadly, and her parents are just helping her get used to the idea and are willing to let her go a little bit earlier if it means she suffers less.

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I don't think it is bad parenting, and in the case of CMT I totally respect their parents choice to move to palliative care.  But I don't think the method of which they communicated it with their daughter was the best

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As someone who does not believe in heaven, I would tell my five-year-old child exactly the same thing.  

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As someone who does not believe in heaven, I would tell my five-year-old child exactly the same thing.  

As someone who does not believe in heaven, I would tell my five-year-old child exactly the same thing.  

Fair enough.  I'm not sure a five year old can really be part of the palliative care discussion in most cases.  But, like I said, I don't think it's bad parenting.

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I agree with you completely, treemom.  I cannot even contemplate the horror of this situation. 

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When I read the mom's second article about the subject, I could understand where she was coming from. 
I think there is a moral difference between parents who reject life-saving medical treatment for their kids (like the ones who have tried to stop their kids from having chemo that would most likely be curative of the kid's cancer, or the JWs who want their kids to die rather than having blood transfusions) and parents like this who have simply decided that they don't want their terminally ill child to suffer through additional invasive treatment. It sounds like, even if they did give this kid aggressive treatment, her prognosis still isn't great and she would eventually need to be on a ventilator full time. Many people don't want that for themselves. I don't know how it feels to be on a ventilator myself, but I have heard that the majority of people with ALS die of respiratory failure because a lot of people choose not to go on a ventilator as their respiratory muscles fail, so it must be that some people just feel it is not worth it. 

I don't even consider this to be the same as assisted suicide. Just because we have the technology to prolong someone's life doesn't mean that we have a moral imperative to keep people alive. I think it is a valid and reasonable option to decide the child has been through enough and let them live their final days in peace and comfort. 

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The second article makes it make much more sense. A child independently stating that they don't think the hospital treatments are worth it is very different to parents giving an ultimatum. Especially since the questions were leading - the other way.

And it sounds like the parents believe in heaven but the kid doesn't. She thinks death is when everything stops, which is IMO a pretty good understanding of death. And made in conjunction with hospital psychs,  bearing in mind the treatments are torturous, this seems like a decision they should be allowed to make.

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When I read the mom's second article about the subject, I could understand where she was coming from. 
I think there is a moral difference between parents who reject life-saving medical treatment for their kids (like the ones who have tried to stop their kids from having chemo that would most likely be curative of the kid's cancer, or the JWs who want their kids to die rather than having blood transfusions) and parents like this who have simply decided that they don't want their terminally ill child to suffer through additional invasive treatment. It sounds like, even if they did give this kid aggressive treatment, her prognosis still isn't great and she would eventually need to be on a ventilator full time. Many people don't want that for themselves. I don't know how it feels to be on a ventilator myself, but I have heard that the majority of people with ALS die of respiratory failure because a lot of people choose not to go on a ventilator as their respiratory muscles fail, so it must be that some people just feel it is not worth it. 

I don't even consider this to be the same as assisted suicide. Just because we have the technology to prolong someone's life doesn't mean that we have a moral imperative to keep people alive. I think it is a valid and reasonable option to decide the child has been through enough and let them live their final days in peace and comfort. 

it isn't considered the same as either of those in the medical community either.  It's palliative care

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Yep, a choice not to continue treatment is different to assisted suicide.

The child is getting medical treatment. It's end of life treatment to make her comfortable. 

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It sounds like this little girl has received medical care and is likely to be facing death sooner rather than later, whether she continues to be treated or not. Attempting to soothe a young child by framing death in the way her parents seem to be doing sounds okay to me. 

It would be different if they were discontinuing potentially life-saving treatment due to their religious beliefs, but they haven't indicated that that's the case at all. It doesn't sound like there's any saving this child, unfortunately; they're just trying to give her some kind of choice about unnecessarily prolonging her suffering, and using their religious beliefs to try and make her understand death in a developmentally-appropriate way. I agree with what some others have said that there's really no way to make a child that young understand death or make an informed decision about medical care, but given that, I really don't think there's anything those parents could've said that would necessarily be better.

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I'm going to have to agree I don't know how you make a 5 year old understand that in a "better," way.  I'm one of those everything stops when we die people, but if it were Icky or Sticky in that little girls place I don't know if I could bring myself to tell them that.  They're my babies, and I'd want to shelter them with good thoughts of the pain ending and something better, instead of all your life was pain and that's it.

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Yep, a choice not to continue treatment is different to assisted suicide.

The child is getting medical treatment. It's end of life treatment to make her comfortable. 

Sorry, that was unclear. By treatment I meant the one particular treatment she hates.

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I've had to put my child through some awful treatment and I still do. You're always carefully considering if it's worth it or not. I can fully understand you would choose not to put your kid through that again if there was no hope of cure. These seem brave, thoughtful people who think of their child's wellbeing first. But what a terrible choice to make. May God have mercy on them.

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I can't even imagine what these parents and Julianna must be going through right now. I'm not even a parent yet and the thought of being put in that position one day makes my blood run cold. I hope, if I am ever forced to make these choices, that I consider the overall well-being and opinions of my child, even if they completely contradict what I want.

I think the parents are doing the best they can in an unimaginable situation. If talking to her about Heaven and what they think will happen there helps them cope or makes Julianna feel a bit better - who am I to judge?

I hope that their beautiful little girl makes it and lives a happy and long life - but I know that isn't likely to happen. I wish them all the strength in the world. I've seen what it's like for a parent to lose their child and for a child to lose their sibling - they're going to need support and love more than anything in the coming years.

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After reading the second article it makes a lot more sense. This family is in my neck of the woods so I know they are being treated by a reputable hospital. It takes courage to stop treatment, even when said treatment sometimes causes more pain then the disease itself. I can see how the family just wants to make sure she is comfortable at this point.

as someone with a chronic (not terminal) illness, if my disease ever got to a point where the treatment causes that much pain with little gain I would stop treatment. It's not saying that medical care won't be given, but the focus would shift from curative to palliative care. I empathize with what they are going through. Also think the mom and dad did the right thing in continuing to discuss heave with the daughter, knowing her disease is terminal. Helping her not to be afraid should definitely be the focus.

sorry for the wall o text, but this hits me in the jugular. Has happened to friends more times then I can count ( their kids have Mito--another horrible metabolic disease) 

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After reading the second article it makes a lot more sense. This family is in my neck of the woods so I know they are being treated by a reputable hospital. It takes courage to stop treatment, even when said treatment sometimes causes more pain then the disease itself. I can see how the family just wants to make sure she is comfortable at this point.

as someone with a chronic (not terminal) illness, if my disease ever got to a point where the treatment causes that much pain with little gain I would stop treatment. It's not saying that medical care won't be given, but the focus would shift from curative to palliative care. I empathize with what they are going through. Also think the mom and dad did the right thing in continuing to discuss heave with the daughter, knowing her disease is terminal. Helping her not to be afraid should definitely be the focus.

sorry for the wall o text, but this hits me in the jugular. Has happened to friends more times then I can count ( their kids have Mito--another horrible metabolic disease) 

Well said.   This is one of those stories where you really have to read the "whole story".  One of the headlines I saw said "Medicine? Or Heaven?"  which is soooo misleading.

This case is unbelievably sad, and I know there are many, many others out there like it.  I understand where the parents are coming from, helping her not to be afraid is paramount right now.  And it sounds like the parents have been fairly successful.

If I were going through this (my kids are grown, but I have a baby granddaughter of seven months) I don't think I could blog about it, at least not while it was happening.  I am always amazed that people can do that; I imagine it's therapeutic in some way.  

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This is Faux news being way overdramatic again.  It pisses me off that people feel that they should criticize a terribly difficult end of life decision made by grieving parents.  Fox news has a political agenda.

As the second article makes clear, this was a choice by the parents, made in conjunction with their health care providers, to use Hospice services and palliative care for a terminally ill little girl.  The discussion about Heaven is merely involving the child in the decision as far as is possible for her age and comprehension level. 

I'm a big fan of Hospice.  IMO, it is a pity than some people and families are not referred to Hospice sooner.  Basically you have to have a life expectancy of less than six months, although if you outlive that Hospice care continues.  You can also change your mind and choose extraordinary interventions to prolong life.

In the UK there are specialized Hospices for children, because it is generally recognized that they have different needs than dying adults.  I'm not sure what the situation is in Oregon, but clearly the family is receiving needed services.

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I read the mother's second article and I felt like it helped me understand their situation better: http://themighty.com/2015/06/how-our-daughter-helps-us-face-our-greatest-fear/

I think the way the headline was worded, as the parents giving her a choice between hospital and heaven, was misleading. It sounds like death is an inevitability for Julianna, sadly, and her parents are just helping her get used to the idea and are willing to let her go a little bit earlier if it means she suffers less.

The context given in that post fully brings me to the parents' side. I was initially concerned that they were asking her very loaded questions and leading her into the decision without giving her all the information she'd really need to make an informed decision (a huge issue seeing as she's so young), but it seems like in reality, Julianna came to make her choice on her own, communicated it to her parents clearly, and her parents talked it over both with her to make sure she understood what she was choosing to do and with psychiatric professionals and members of Julianna's medical team so that the care she'd get would be supportive and give her as many happy days with her family as possible. So now that I know the full story, good on Julianna's parents for respecting their child's wishes and helping make sure that she makes informed, conscious choices that she can understand at her age level, and good on them for showing that palliative care isn't giving up.

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