Charlie Gard

[Uppercut]

Some really interesting posts ITT.

Obviously children have some inalienable rights independently of their parents, and the state should protect those. Do those rights include the right not to undergo massive, unnecessary suffering for no end? I think they probably do. I therefore lean towards the conclusion that the court has probably made the right decision despite the fact that in the shoes of the parents I would quite possibly have behaved in much the same way. Absolutely brutal case to rule on though.

 

[Burgey]

Yeah I think that's also a key point (though not necessarily here as I think the people they are talking about are reputable clinic/places). With all due respect to libertarian principles, it's very important to have regulation and oversight (as in this case) in healthcare so people just don't get fleeced for all their money by snake oil artists when they're in a vulnerable state. Like when your child is dying and most parents would go bankrupt without even thinking about it if it meant they could be saved. The state does have a responsibility there I think.

No!!! Let the market sort it out

 

[Daemon]

Interested to hear Ausage/PEWS reply to some of the above, some excellent points being raised.

 

[Ausage]

Interested to hear Ausage/PEWS reply to some of the above, some excellent points being raised.

Not sure I have that much to add over my initial statement tbh. I understand that there is a group of professionals that believe that this is not in the best interest of the child (and TC's post makes it a bit clearer) but that was never the issue for me. I think the bar for denying parents the right to have their child treated in this situation should be exceptionally high and it still hasn't been vaulted in my mind. Others think differently.

One thing I would say is that while much of the commentary has focused on the legality of the decision, the ethical component is a separate issue. I've no doubt that the court system has done a good job in determining whether the hospital's actions are legal, I'm not convinced it's the right thing to do.

 

[Burgey]

What about anti-vaxxer parents?

 

[Ausage]

What about anti-vaxxer parents?

I struggle with this one a lot more. Not only is it the inverse of the Gard situation (parents refusing treatment that has a very clear and obvious benefit to the child) but there is a very real public health risk to them following through on their conspiratorial thinking (I know I'm being generous calling it that).

I don't know what the answer is. I don't like the idea of Stormtroopers beating down the doors of private homes and shoving needles into children but I think this is one of those situations where their #freedom impinges on the #freedom of others in a very real way so I wouldn't be against some form of intervention.

 

[Burgey]

I have a number of cases involving kids' medical treatment where parents have issues with the treatment of their kids, some of those kids having catastrophic injury as a result. In some of those cases the parents want to take their kids elsewhere, or when they question the treatment being given to their child, they're threatened with a referral to child services/ DOCS. And I'm not talking about those parents refusing vaccinations. I'm talking about healthy kids who've gone in for routine procedures and come away with massive brain damage, and when the parents get upset/ angry, they have the threat of intervention thrust upon them. It stinks.

On in particular is a ridiculous case. When it's done and dusted there's a book in it I reckon.

 

[Ausage]

You're feeding my anti-state paranoia here Burgey

But yeah sounds like awful stuff.

 

[GIMH]

AWTAusage

 

[vic_orthdox]

Bit like the situation with Lyme Disease, not recognised in Australia but know two people who have it. End up having to raise their own funds to get to Germany to pay for treatment.

 

[Ausage]

Bit like the situation with Lyme Disease, not recognised in Australia but know two people who have it. End up having to raise their own funds to get to Germany to pay for treatment.

The Lymes thing is completely crazy.

My sister contracted it when she was 14, we think while on a trip to Lady Musgrave Island in QLD. When she first fell sick it went completely undiagnosed because she hadn't been out of the country. Ended up being treated for chronic fatigue and psychological issues. Went for over a decade of testing, being diagnosed with various things (worst was Fybromyalgia for which she was given medication that severely disrupted her mental health) before being recommended to a doctor who had to essentially break the law to secretly send a blood sample to the US to be tested. When it came back positive she again had to be treated in secret.

Treatment ended up going fairly well, but she'll always have issues because the disease went untreated for about 13 years. She's now 32, has a child (who couldn't even be legally tested for it ) and lives a pretty normal life but others haven't been so lucky. I'm not one for conspiracy theories but something about the way the government treats that disease stinks to high heaven, even considering it's a notorious mimic and treatment is relatively invasive.

 

[silentstriker]

So I don't know what the deal is in Australia with Lyme disease. I am not knowledgeable enough to comment. I know the tick species are different and it's unclear (as far as I know), if they carry the bacteria that cause the disease.

But I'll just put this here about the US. Lyme disease is obviously real. It's a pretty simple treatment that involves some antibiotics. No one doubts that. But the problem is this syndrome of "chronic Lyme disease". Some people with Lyme disease do have long term sequellae that we don't understand but the sham treatment of a picc lines with months of antibiotics is often very dangerous and hasn't been shown to work at all. In the past people have come to the ICU with massive infections caused by these crazy lines and long term treatment. People talk about the "government" but I personally know people who write the Lyme guidelines and you can read them yourself with all the primary sources attached. It's not some nefarious conspiracy. People are just analyzing the best available evidence and making the most appropriate guidelines. You can't go by anecdotes. And the plural of anecdote is not data.

 

[Daemon]

So I don't know what the deal is in Australia with Lyme disease. I am not knowledgeable enough to comment. I know the tick species are different and it's unclear (as far as I know), if they carry the bacteria that cause the disease.

But I'll just put this here about the US. Lyme disease is obviously real. It's a pretty simple treatment that involves some antibiotics. No one doubts that. But the problem is this syndrome of "chronic Lyme disease". Some people with Lyme disease do have long term sequellae that we don't understand but the sham treatment of a picc lines with months of antibiotics is often very dangerous and hasn't been shown to work at all. In the past people have come to the ICU with massive infections caused by these crazy lines and long term treatment. People talk about the "government" but I personally know people who write the Lyme guidelines and you can read them yourself with all the primary sources attached. It's not some nefarious conspiracy. People are just analyzing the best available evidence and making the most appropriate guidelines. You can't go by anecdotes. And the plural of anecdote is not data.

Well apparently Australia does, because they're using some sort of outdated definition?

 

[silentstriker]

I'm not an expert in what their definition is but as far as I know, the bacteria that causes Lyme disease has never been found in Australia. But as I said, I know nothing about Lyme disease in Australia so it's possible they aren't using a scientific definition. I just don't know.

However, the problem with just "testing" people for it is that the test isn't very good in the absence of known exposure. So if you were to take a hundred random people, a bunch of them might test positive (e.g. a false positive test) despite not having Lyme disease. That's why if a patient comes in just asking for a test for Lyme disease, we tend to avoid doing it in the absence of history of exposure. This is true for many tests in medicine - and it's an important point to remember. People aren't saying no because they want to be assholes - no one likes being the guy that says no to a patient. False positives can have terrible repercussions including unnecessary medications (even chemo), major surgeries, etc etc.

 

[Ausage]

I'm aware of the problems treating Lyme's disease and I understand and support the caution surrounding it. I'm also aware that my sister and the people she's met who have contracted the disease here are just data points and that doctors (particularly) are not evil when they treat people in ways they don't want (this is true for both Lymes and the Gard case). But the government just saying "Lymes can't be contracted in Australia, end of story" is a cop out. It very obviously can be contracted here and they should factor that in while they work out how it's happening.

I don't think there's a complicated conspiracy about it, I think they just don't want to open themselves up to a class action and that's more important than looking for ways to treat a complicated disease.

 

[silentstriker]

I will defer to you on what's going on in Australia and I hope your sister is doing well!

 

[vic_orthdox]

It seems ridiculous though, even if they say that it can't be contracted in Australia, that they won't help someone who may have contracted it overseas.

 

[Ausage]

It seems ridiculous though, even if they say that it can't be contracted in Australia, that they won't help someone who may have contracted it overseas.

As I understand they'll test/treat you if recently travelled to a place where they acknowledge the disease as existing. That's my mum's memory of the situation 18 years ago at least. It's definitely true that they won't treat you if you've been diagnosed overseas, arguably for the reasons SS mentioned. My nephew not being tested given my sister's history is also very strange given it's able to pass from mother to child (6 months in he's having no problems thankfully).

 

[silentstriker]

She was treated, correct?

https://www.ncbi.nlm.nih.gov/m/pubmed/17176487/

Even in an area where Lyme is very common, we wouldn't really test the infant.

 

[Ausage]

She was. That makes more sense now, cheers.