Little girl chooses heaven......

[Shaker]

What you say may sound logical to you but not to someone who accepts heaven and God as real.  Your arguments about unicorns and fairies don't wash because these are not within the purview of logic in the first place.

Why are they not in the "purview" of logic but gods and afterlives are? Specifically and exactly please.

This is, needless to say, a monumental exercise in special pleading that your favoured woo is logical but other kinds of woo that you don't buy into (rare for you, since you seem to believe every kind going) isn't.

[Outrider]

Outrider....you are again starting with the same premise and expecting everyone to go along with you. When you agree that you have no proof against heaven don't expect everyone to accept your logic and abandon all belief in a heaven. Its as simple as that.

What proof do you have that Valhalla is not real? Do you expect to only get in if you die in battle? What proof do you have that Nirvana is not real? Do you really expect to be reincarnated based upon whether you've forgone experiencing this life while you have it? What proof do you have that Anubis is not waiting to weigh your heart? What proof do you have that you aren't going to join the queue waiting to get into Hades?

You don't accept at least most of these notions, if any, yet you can disprove none, nor offer me any more evidence for any of the Christian conceptions of heaven than you can for any of the others. It's not for me to 'disprove' heaven, it remains just an assertion until you can back it up.

What you say may sound logical to you but not to someone who accepts heaven and God as real.

No, even some people who accept heaven as real can accept that it's a matter of faith, not reason, and that it isn't for non-believers to try to prove that there isn't a celestial teapot.

Your arguments about unicorns and fairies don't wash because these are not within the purview of logic in the first place.

And you think becoming a ghost is?

As Niels Bohr said...'no..no...you are not thinking...you are just being logical'.

And Bohr was explaining counter-intuitive ideas to people who couldn't let go of their preconceptions to actually pay attention to the data, the exact opposite of this situation. You are reading, but you aren't understanding.

O.

[Shaker]

Do you all get your nickers in a twist over children being told Santa and his reindeer are going to deliver their presents on Christmas Eve?

 

Children grow out of that. It's part of growing up.

The other kinds of fairy tale linger in some people, however.

[ProfessorDavey]

Do you all get your nickers in a twist over children being told Santa and his reindeer are going to deliver their presents on Christmas Eve?

 

The consequences of believing in Santa are trivial.

I might get my knickers in a twist if I thought that a 5 year old child was making a decision to refuse treatment which would certainly result in death if they had been taught to believe that if they died they'd live forever in lapland with Santa and get presents every day of the year.

More so if I felt that the patents were abrogating their fundamental parental responsibilities for decision making when their child is too young (as 5 most certainly is) to have the capacity to consent and therefore make the decisions for themselves.

This case was in the US - I would be pretty confident that were it in the UK the court would be asked to intervene and to determine the course of action in the best interests of the child. This has happened on a number of occasions which children very much older than this child where the court isn't convinced that the child has capacity to consent. In fact below the age of 16 (sometimes even 18) a child is presumed not to have the capacity to consent unless there is clear proof otherwise. In those circumstances decisions must be taken by someone else (usually, but not always, the parents) in the best interests of the child.

Now it may well be that the decision to withhold treatment would be confirmed through the courts, but the point is that the decision needs to be taken by someone in the best interests of the child, not by the child if that child does not have the capacity to consent (which would definitely be the case for a 5 year old).

To clarify - this would be if there was clear evidence that the parents were not taking the decision themselves but leaving it up to the child, which seems to be the inference of the information we have on this case.

[ippy]

Well, I'm not going to mince my words here. That is absolute, unmitigated rubbish. Thank goodness that Shaker and others have posted. I tried reading the woolly, sanctimonious-type posts but had to scroll past them.

So glad to see you're back, Shaker. Keep well!

Unfortunately for you, Susan, the posts you refer to are no more 'absolute, unmitigated rubbish' than the ones that Shaker, you and others post.  Over the years this and other boards havee been up and running,  have yet to see any evidence in support of your stance - or at least no support that doesn't crumble under even the most basic scrutiny.  Unfortunately, despite the claims of some here, science doesn't answer all he questions people ask, and is unlikely to do so, since it is based on only one part of reality.

So you think there is another part of reality Hope and your evidence for this is?

ippy

Good luck!

You've made me smile Shaker, do you think, the usual long silence we get most times anyone gives Hope a poser similar to the one I gave him, poor old Hope I reckon he goes into his replica monk's cell and dons the sackcloth and ashes?

Well Shaker, the evidence certainly does seem to point that way.

ippy

[ippy]

Outrider....you are again starting with the same premise and expecting everyone to go along with you. When you agree that you have no proof against heaven don't expect everyone to accept your logic and abandon all belief in a heaven. Its as simple as that.

What you say may sound logical to you but not to someone who accepts heaven and God as real.  Your arguments about unicorns and fairies don't wash because these are not within the purview of logic in the first place. 

As Niels Bohr said...'no..no...you are not thinking...you are just being logical'.

I doubt Richard Feynman would have agreed with Niels; R Feynman was supposed to be a genius.

ippy

[ProfessorDavey]

Stepping away from the whole religious aspect for a moment.

Even the experts are undecided on how much say a four year old should have about their own treatment in some circumstances.

It's that that seems to be the bone of contention.

Not the religion.

In part two of Srirams article it goes on to discuss the plus and minuses of that.

http://edition.cnn.com/2015/10/27/health/girl-chooses-heaven-over-hospital-part-2/index.html


This gives both sides on the debate on a four/five year old having a POV that is taken into account ( has nothing to do with religion really)

Without realizing it, Michelle and Steve had stepped into a heated debate.

 
Bioethicist Art Caplan has read Michelle's blogs, and he thinks she's made the wrong decision.

"This doesn't sit well with me. It makes me nervous," he says. "I think a 4-year-old might be capable of deciding what music to hear or what picture book they might want to read. But I think there's zero chance a 4-year-old can understand the concept of death. That kind of thinking doesn't really develop until around age 9 or 10."

He says Julianna's parents shouldn't put any stock in what she has to say about end-of-life decisions. Maybe she chose heaven over the hospital because she feels how much her parents hate to see her suffer; young children often pick up cues from their parents and want to please them, he says.

Caplan, before he started the bioethics program at New York University a few years ago, worked at the University of Pennsylvania and consulted on end-of-life cases at Children's Hospital of Philadelphia with Dr. Chris Feudtner, a pediatrician and ethicist there. Caplan respects him a great deal.

Feudtner, it turns out, disagrees with Caplan about Julianna.

"To say her experience is irrelevant doesn't make any sense," he says. "She knows more than anyone what it's like to be not a theoretical girl with a progressive neuromuscular disorder, but to be Julianna."

At his hospital, he has asked dying children her age what they want to do, and in the appropriate circumstances, he has taken it into consideration.

For example, he doesn't take their opinion into account when it's a black and white decision -- children with treatable leukemia must get chemotherapy, for example, no matter how hard they protest. But when the choice is gray, when there's more than one reasonable option, as there is with Julianna, he has put stock in their wishes.

As for a 4-year-old not having the mental capacity to think through death, he's found that even adults often don't think through such issues as carefully as one might like.

"My 86-year-old father died in April, and I'm not sure he truly got it," he says. "He was bed-bound from cancer, and he said, 'If this is the best I get, get me a Smith & Wesson.' Did he mean that? I don't know."

Feudtner, the chairman of the American Academy of Pediatrics section on hospice and palliative medicine, says as best he can tell from Michelle's blogs, Julianna's choice for heaven over the hospital is reasonable and her parents are right to listen to her.

"Palliative care isn't about giving up. It's about choosing how you want to live before you die," he says. "This little girl has chosen how she wants to live."

It depends which doctor or bioethicist you think has it right, religion really is a bit of a red herring.


🌹

I'm not actually convinced they are disagreeing fundamentally.

I suspect both are taking a relatively orthodox line on consent issues linked to children.

Typically that means that in circumstances where the child does not have the capacity to consent, the decision needs to be taken by someone else (usually the parents, but not always) and that decision must be based on what is in the best interests of the child.

Now there will also be an expectation (really a requirement) to try to understand what the child thinks, taking account of their level of maturity. However, unless the child is actually deemed to have capacity to consent, that opinion of the child is not determinative - it helps inform the decision, but cannot be considered to be more than one element of information that helps guide the decision.

Clearly the older, and more mature the child, the closer to determinative that opinion becomes, but in the case of a 4 year old (which appears to be the age at which this view from the child arose) it would be a long way from being determinative.

So I think both ethicists are accepting that the decision cannot be the child's but needs to come from another person on the basis of best interests. Both also appear to recognise that trying to understand the child's view is important - the only real disagreement seems to be on the 'weight' that should be given to the child's views in relation to someone else making the decision.

No serious ethicist would really suggest that a 4 year child is ever actually able to give consent in such circumstances, and indeed nor does Feudtner. He is clear that the child's views should be taken into consideration, in appropriate circumstances and that the parents were 'right to listen to her'. What he isn't saying is that the child should make the decision.

[ProfessorDavey]

Professor Davey

I don't think anyone is really saying four year olds should be making their own decision only that in some cases young  children may be mature enough for their POV to b taken into account.

🌹

But the tenor of the article is that the decision to 'choose heaven over hospital' was taken by the 4 year old and her parents then supported her decision.

That's what I think is wrong - a 4 year cannot make such a decision and although (appropriate to her maturity, which as a 4 year old is very limited) her view should be listened to and taken into account, the decision must be taken by an adult (usually the parents) in the child's best interests.

And actually the parents fail in many ways in how they are discussing things with their daughter if you compare it with the 'gold standard' approach from the cancer.net info you have provided. So for example failing to ask open questions, but posing direct yes/no type questions on whether she wants to go to hospital or heaven. Also the info you provided is clear that parents need to talk about death and dying, and not use euphemisms, but that's exactly what the parents seem to do, using going to heaven as a euphemism for dying.

Actually the key info which demonstrates that she really has very little understanding of the situation is her comment about her brother. She has been told that the parents won't be there (yet) but her grandma is. But no-one has told her about her brother so she asks whether he will be there too. Now if she had any real understanding she would appreciate that a perfectly healthy brother isn't going to die just because she dies.

Now I understand that the parents are in a terrible situation but they do appear (at least from the article) to be abrogating their own responsibility by leaving the decision to a 4 year old. But also once the child has said this they seem to be continually reinforcing her view. One key issue in consent is that you can change your mind, and certainly a 4 year old may be extremely likely to change year mind in the year from 4 to 5. Yet the parents appear (again from the article) to be giving her very little opportunity to change her mind - cementing her view from a year ago in place. That also isn't right.

The final thing that actually worries me about the article is the lack of definitive clinical diagnosis. The article implies that she has a disease linked to a specific genetic mutation, which these days is easy to detect, yet they say they haven't been able to detect that mutation. It may be she does not have the condition that they currently think, and once a proper diagnosis is reached that the actual condition might be more readily treatable.

[Rhiannon]

I think the fact that the mother introduced the topic suggests that she had decided it was a probable outcome that her daughter would choose 'heaven'. You don't suggest to a four year old a trip to Disneyland unless you are already sure you can take them there. The parents appear to have decided to let their daughter die if she agreed.

[ProfessorDavey]

I think the fact that the mother introduced the topic suggests that she had decided it was a probable outcome that her daughter would choose 'heaven'. You don't suggest to a four year old a trip to Disneyland unless you are already sure you can take them there. The parents appear to have decided to let their daughter die if she agreed.

This article very much reflects my views on the matter:

http://www.bioethics.net/2015/10/can-a-5-year-old-refuse-treatment-the-case-of-julianna-snow/

[Owlswing]

I think the fact that the mother introduced the topic suggests that she had decided it was a probable outcome that her daughter would choose 'heaven'. You don't suggest to a four year old a trip to Disneyland unless you are already sure you can take them there. The parents appear to have decided to let their daughter die if she agreed.

This article very much reflects my views on the matter:

http://www.bioethics.net/2015/10/can-a-5-year-old-refuse-treatment-the-case-of-julianna-snow/

I would not say "Point Proven" but I would say that the parents decisipon  is seriously called into question.

As, I think, so are their motives.

[Rhiannon]

My impression is that the girl's parents have decided to refuse treatment which, as she has a terminal illness, is different from refusing chemo for a cancer that could result in remission. For whatever reason - probably to make themselves feel better - they have 'included' her in the discussion and want to feel she's part of it. As they have blogged about her I guess making this public is an extension of that.

My daughter was nearly four when her favourite friend died. She used to draw pictures of him to try to make sense of where he was. I couldn't tell her much because I didn't really have an answer. I could have lied and said I was sure he was in heaven but I wasn't and kids can smell a lie a mile off.

[ProfessorDavey]

My impression is that the girl's parents have decided to refuse treatment which, as she has a terminal illness, is different from refusing chemo for a cancer that could result in remission.

And that is another rather confusing issue.

In the article it is claimed (although there appears to be no definitive diagnosis) that she has Charcot-Marie-Tooth disease, and a brief trawl of information about this condition reveals that it isn't life threatening and that most people with the condition have normal life expectancy.

So it is all very strange - if she does have this condition it would appear to be incorrect to claim she has a terminal illness. If she doesn't have it, then surely there is a need to find out what condition she does have (and of course whether or not it is terminal).

So there are rather a lot of parts to this story that don't quite add up.

[Rhiannon]

According to everything I've read the medical team in charge of her care support the family's decision. I wouldn't have thought they could do that unless she is terminally ill - in fact a court order to force continued treatment would be the likely outcome.

Seeing a loved one suffering is terrible, but one thing that isn't often acknowledged is that it is our own pain at their suffering that we sometimes find hard to bear. Whether that is the case here, I have no idea.

I find the most worrying aspect the sentimentalising the death of a child. The death of my friend's son was the ugliest thing I've ever experienced.

[ProfessorDavey]

According to everything I've read the medical team in charge of her care support the family's decision. I wouldn't have thought they could do that unless she is terminally ill - in fact a court order to force continued treatment would be the likely outcome.

Seeing a loved one suffering is terrible, but one thing that isn't often acknowledged is that it is our own pain at their suffering that we sometimes find hard to bear. Whether that is the case here, I have no idea.

I find the most worrying aspect the sentimentalising the death of a child. The death of my friend's son was the ugliest thing I've ever experienced.

Actually we've heard very little from the medical team and that which we have seems rather confused. So in the CNN article, that everything else seems to be based on, in one place we are told that the medical team found it:

'hard to give Michelle and Steve a prognosis' and that 'he sent her DNA to a specialized genetics lab at the University of Miami for a wider search. They couldn't find anything definitive, either' yet elsewhere the article claims that:

'There's no debate about the medical facts of Julianna's condition.'

Well those statements are incompatible, either there is no debate or there is uncertainty about prognosis - there can't be both.

From what I've read elsewhere her condition isn't in itself life threatening (as cancer might be) although some of the symptoms, if untreated, could be life threatening, in her case build up of fluid on the lungs. So it is rather like claiming diabetes to be a terminal illness. Sure if you fail to have insulin it can be fatal, but it is treatable (but not curable).

So as I said there are a lot of things in this story that don't add up. And perhaps that's because we a reading it through the prism of the popular press which likes to sensationalise.

[ProfessorDavey]

Actually I'm struggling to find any credible medical source that suggests that CMT is fatal (i.e. terminal), but lots that specifically says it isn't fatal, and rarely reduces life expectancy, for example from the NHS, the leading USA NIHR, neuropathy centre in chicago etc etc.

As I've said, lots doesn't add up here.

[Gordon]

This is a tragedy for sure - I'm just perplexed that the parents seem to have allowed this to become, in my view, a sideshow with them in the starring roles. 

I'd have thought this would be a private matter for most families in these awful circumstances.

[ProfessorDavey]

My impression is that the girl's parents have decided to refuse treatment which, as she has a terminal illness, is different from refusing chemo for a cancer that could result in remission.

And that is another rather confusing issue.

In the article it is claimed (although there appears to be no definitive diagnosis) that she has Charcot-Marie-Tooth disease, and a brief trawl of information about this condition reveals that it isn't life threatening and that most people with the condition have normal life expectancy.

So it is all very strange - if she does have this condition it would appear to be incorrect to claim she has a terminal illness. If she doesn't have it, then surely there is a need to find out what condition she does have (and of course whether or not it is terminal).

So there are rather a lot of parts to this story that don't quite add up.

No it doesn't, in Srirams link it was the medics ( who were unable to do any more) who offered the choice to the parents, who then consulted with their child.

Which is different to the parents making up their own mind and offering the child a choice and then going to the medics.

 

Why would the medics describe CMT disease as terminal, when all other medical information seems to suggest it isn't.

Actually what appears to be the case is that her disease isn't terminal, but she is more susceptible to infections that due to her condition may lead to pneumonia, which if untreated could kill her. That isn't the same as her having a terminal illness.

Go check out CMT disease and see if you can find a reputable source that describes it as terminal or fatal. They don't, quite the reverse.

[ProfessorDavey]

This is a tragedy for sure - I'm just perplexed that the parents seem to have allowed this to become, in my view, a sideshow with them in the starring roles. 

I'd have thought this would be a private matter for most families in these awful circumstances.

I agree - why on earth would you opt for all this publicity.

I can understand in cases where perhaps publicity might mean donations that may help send the child to a private clinic for treatment. But that doesn't seem to be the case here.

[SusanDoris]

This is a tragedy for sure - I'm just perplexed that the parents seem to have allowed this to become, in my view, a sideshow with them in the starring roles. 

I'd have thought this would be a private matter for most families in these awful circumstances.

I agree - why on earth would you opt for all this publicity.

I can understand in cases where perhaps publicity might mean donations that may help send the child to a private clinic for treatment. But that doesn't seem to be the case here.

The more I have read here, the more the word 'exploitation' does begin to come to mind.

[Owlswing]

This is a tragedy for sure - I'm just perplexed that the parents seem to have allowed this to become, in my view, a sideshow with them in the starring roles. 

I'd have thought this would be a private matter for most families in these awful circumstances.

I agree - why on earth would you opt for all this publicity.

I can understand in cases where perhaps publicity might mean donations that may help send the child to a private clinic for treatment. But that doesn't seem to be the case here.

The more I have read here, the more the word 'exploitation' does begin to come to mind.

Agreed.

[Rhiannon]

This is a tragedy for sure - I'm just perplexed that the parents seem to have allowed this to become, in my view, a sideshow with them in the starring roles. 

I'd have thought this would be a private matter for most families in these awful circumstances.

I agree - why on earth would you opt for all this publicity.

I can understand in cases where perhaps publicity might mean donations that may help send the child to a private clinic for treatment. But that doesn't seem to be the case here.

It's actually sounding more and more implausible. If she isn't terminally ill then presumably the medical team could be in all sorts of trouble for this. I dunno, I smell a rat.

If it's all genuine then it's just bizarre.

[ProfessorDavey]

This is a tragedy for sure - I'm just perplexed that the parents seem to have allowed this to become, in my view, a sideshow with them in the starring roles. 

I'd have thought this would be a private matter for most families in these awful circumstances.

I agree - why on earth would you opt for all this publicity.

I can understand in cases where perhaps publicity might mean donations that may help send the child to a private clinic for treatment. But that doesn't seem to be the case here.

It's actually sounding more and more implausible. If she isn't terminally ill then presumably the medical team could be in all sorts of trouble for this. I dunno, I smell a rat.

If it's all genuine then it's just bizarre.

I haven't found any evidence to suggest that CMT as a disease is ever terminal. And actually if you get into the details it isn't clear that the medical staff in this case are claiming it to be.

The focus seems to be on invasive intervention that might be necessary were she to develop pneumonia and be unable (due to her condition) to clear fluid from her lungs. The issue seems to be whether this life saving intervention should be provided in the future if she needs it. And to balance that against the quality (and quantity of life) if she lives rather than dies.

Now there doesn't actually seem to be an issue on quantity of life, the medical opinion seems clear that patients even with extreme CMT have a life expectancy the same as, or barely shorter than, those without the condition.

There is clearly an issue on quality of life - if an intervention is highly invasive, painful and distressing but merely perpetuates a life that has very little quality, and perhaps only briefly then quite reasonably that intervention may be seen to be 'futile' and not recommended. Do not resuscitate notices being obvious examples.

But here is the tricky thing in this case. Imagine the parents had chosen not to allow intervention last time and she had dies (and she presumably would have done), the child would have lost more than a year of life with parents, friends, family etc which (from what I gather) has been pretty good (as far as it can be in her circumstances). There seems to be a clear view that currently she is 'living life to the full' as much as her condition allows. So image in another years time she gets an infection and develops pneumonia requiring naso-tracheal suctioning - which is pretty awful - what to do. With this she might have another 2 years before needing this again, and so on. Who is to know how either the parents, or even the child, will feel about that when the time comes, and in retrospect whether they'd feel this was the right thing to do or the wrong thing. I'm not getting any feeling that the parents feel they should have let her die last time.

This seems to be the heart of the issue (which is sensationalised and brought across inaccurately by the popular press).

But the bottom line is that although this should be considered and discussed, a decision should only be taken at the time it is needed. The parents and the child might feel very different is she needs intervention at the age of 7 than they do now when she is 5.

[Rhiannon]

I've read a quote from the doctor in charge of her care who says that she doesn't 'have long left'. The nurse seems more concerned with the pain that the treatment causes.

 

[ProfessorDavey]

I've read a quote from the doctor in charge of her care who says that she doesn't 'have long left'. The nurse seems more concerned with the pain that the treatment causes.

 

Can you provide a link please.

The issue is that this doesn't seem to accord with the suggestion that she has CMT, which even in severe cases doesn't seem to be terminal.

Like I have said several times, something here doesn't add up.