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The awful situation of Charlie Gard

Re: The awful situation of Charlie Gard

Postby Russell » Wed Aug 02, 2017 9:38 am

The problem here is, there will always be a physician who can offer some tiny hope of a treatment, if you look hard enough. The same as there is always an opposing expert witness. The parents are likely to highly overestimate the validity of the claimed treatment and in such cases I'm thankful the courts are willing to intervene.
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Re: The awful situation of Charlie Gard

Postby Voldemort » Wed Aug 02, 2017 9:42 am

atticus wrote:At the centre of this is the question of what us in the best interests of the child.

I completely agree.

The question is then, how do we decide what should happen in situations like these, and who makes that decision?

On one end of the spectrum are parents putting their hopes in quackery with zero evidence of benefit, which would of course only cause further suffering.

At the other end is very expensive (privately funded) and newly developed treatments, still at early stages but may provide a very slim hope of partial recovery – this could also prolong suffering but with a small chance (say 1 in 10) of treating the condition. Additionally as with many new and less established treatments, expert opinions are typically divided.
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Re: The awful situation of Charlie Gard

Postby Voldemort » Wed Aug 02, 2017 9:46 am

Russell wrote:The problem here is, there will always be a physician who can offer some tiny hope of a treatment, if you look hard enough. The same as there is always an opposing expert witness. The parents are likely to highly overestimate the validity of the claimed treatment and in such cases I'm thankful the courts are willing to intervene.

At what point should the judges draw the line? is 1 in 10 chance worth taking? 1 in 50?
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Re: The awful situation of Charlie Gard

Postby Hairyloon » Wed Aug 02, 2017 9:53 am

Voldemort wrote:At what point should the judges draw the line? is 1 in 10 chance worth taking? 1 in 50?

Even that oversimplifies: is it a 1 in 10 chance of how much improvement?
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Re: The awful situation of Charlie Gard

Postby Voldemort » Wed Aug 02, 2017 9:57 am

Hairyloon wrote:
Voldemort wrote:At what point should the judges draw the line? is 1 in 10 chance worth taking? 1 in 50?

Even that oversimplifies: is it a 1 in 10 chance of how much improvement?

For the purpose of this discussion assume a partial recovery, severe learning disabilities but can survive without life support.
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Re: The awful situation of Charlie Gard

Postby Russell » Wed Aug 02, 2017 10:17 am

Well in this case the probability was zero as the treatment was untested. There are some many factors to consider, these could only ever be a case by case assessment. QOL, Pain Index, Levels of Self Awareness, Self Determination, Short term prognosis, long term prognosis, secondary symptom alleviation, side effects and so on.
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Re: The awful situation of Charlie Gard

Postby Russell » Wed Aug 02, 2017 10:22 am

I actually think self determination is key, could this child now or at any point say, 'well life is difficult, painful and uncomfortable but this discomfort is a price I don't mind paying'. In this case I do not believe the child could ever have the self determination to form a judgment to negate the effects of his condition.
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Re: The awful situation of Charlie Gard

Postby shootist » Wed Aug 02, 2017 11:43 am

And still the question remains (not in law, that's been decided AFAIK), what of the parent that is determined to refuse a blood transfusion for their child to save it's soul from eternal damnation? Surely a worthy principle.

What of a parents present when their daughter is giving birth and due to complications is unconscious when the situation arises that a decision has to be made to save either the baby or the mother, as only one can be saved, and the parents choose the baby according to Catholic custom? Slightly different I know, but still a case of parents who believe they know best.

The judgement of parents under such situations cannot usually be trusted to be competent. Unsubstantiated beliefs ought not be allowed to triumph over rational informed opinions.
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Re: The awful situation of Charlie Gard

Postby diy » Fri Aug 04, 2017 5:25 am

In all situations, I'd prefer the state to adopt a view that in most situations the parents judgement is deemed best for the child. I'd prefer court intervention to be only where there was a clear and obvious flaw in their beliefs/judgement.

If their desire to try something different does not amount to neglect, it should be respected.

Terminally ill kids go through horrendous trials with little hope of success. What is best for the child is not easy to determine.
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Re: The awful situation of Charlie Gard

Postby dls » Fri Aug 04, 2017 9:11 am

Terminally ill kids go through horrendous trials with little hope of success.


They can indeed, and many do.

One real difficulty here is that there is a fundamental difference between the decisions one might make for oneself, and the decisions a parent makes for a child.
As an adult I am free (with very limited exceptions) to use whatever criteria I think right to decide how I am to be treated. A parent making a decision for a child suffers at least two sometimes directly conflicting pressures. Their task is to make the decision that a patient _should_ make if tat patient had the courage information and determination to make that decision. A parent does not have anything like the freedom they might have about their own lives to act irresponsibly.
Second, there are those around you who make very simple assessments that absolutely anything and everything has to be done to save a child's life. Those expectations are impossible to manage.
Third there is an unbearable pain of the anticipated loss of a child. That pain has to be faced. There is the associated and proper fear of having to live with the questions of 'Did I do everything?' and 'did I do it right?' It is well over thirty years since our daughter died. These are questions which still churn my stomach.
A rational decision has to be made which allows fully for the reality of the lives that many children face in exactly the way did describes.
Any such decision is made against a background of insurmountable complexity and necessary uncertainty.
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