Goodbye little Indi

[CRAZY_CAT_WOMAN]

Maybe this would have been a really good place to start.

Then Conservatives Christian need to stop voting against it.

 

[civilwarbuff]

Then Conservatives Christian need to stop voting against it.

Voting against what?

 

[ThatRobGuy]

A more balanced source: Indi Gregory, sick baby at center of legal battle in Britain, dies

​

Doctors argued that Indi had no awareness of her surroundings and was suffering and should be allowed to die peacefully.​

Here's a link on the disease: Mitochondrial Disease | Children's Hospital of Philadelphia

This is very reminiscent of the story of Charlie Gard, if people still remember that story.

That was also a "there's more to the story" situation. Where it was portrayed by some on the right wing as "see, these are those death panels we warned you about with universal healthcare", when in fact, the child had a fatal condition with irreversible brain damage, and the parents were trying to get him over to the US to try "alternative medicine" and the British courts said "no".

And much like in the Charlie Gard case, these parents were also trying to go for "alternative medicine" as a last ditch effort.

While I can sympathize with a parent who wants to try something/anything that gives them a glimmer of hope. Unproven alternative therapies with a 0% success rate are borderline predatory in that they prey on people who aren't thinking clearly.

The British courts (in both cases) ruled correctly I feel. Either way, they were going to lose their baby...this way they won't lose their life savings in addition to losing their baby.

 

[RileyG]

How very sad

 

[civilwarbuff]

and the British courts said "no

I am guessing that many of us here have the biggest problem with a government official making that decision and not the family. Here in the US, that is hard/almost impossible to understand how the parents wishes can be ignored especially when the means for care/treatment (however 'alternative' it may be) is provided at no inconvenience to the gov't. This is, after all, not a pet being put down but a human being.

 

[ThatRobGuy]

I am guessing that many of us here have the biggest problem with a government official making that decision and not the family. Here in the US, that is hard/almost impossible to understand how the parents wishes can be ignored especially when the means for care/treatment (however 'alternative' it may be) is provided at no inconvenience to the gov't. This is, after all, not a pet being put down but a human being.

There's still times here in the US where government entities step in, in the best interests of the person.

Whether or not it's of any inconvenience or cost to the govt. is secondary.

For instance, in my home state of Ohio (not exactly a blue state...and certainly not a state where there's any rationing of care, we have some of the top medical facilities in the world like Cleveland Clinic, UH, MetroHealth, and Summa), here's the statute regarding the matter for when doctors can request a court order to remove life support:

The attending physician and one other physician who examines the patient determine, in good faith, to a reasonable degree of medical certainty, and in accordance with reasonable medical standards, that the patient is in a terminal condition or the patient currently is and for at least the immediately preceding six months has been in a permanently unconscious state, and the attending physician additionally determines, in good faith, to a reasonable degree of medical certainty, and in accordance with reasonable medical standards, that the patient is unable to make informed decisions regarding the administration of life-sustaining treatment and that there is no reasonable possibility that the patient will regain the capacity to make those informed decisions.


Those kinds of "escape hatches" are there for a good reason:
A) to protect the person so they're not left lingering on life-support indefinitely (that's cruel to the individual)

B) to protect the families themselves from losing all of their money, either by clinging to false hope for years on end by paying for life support, or being swindled out of their money by charlatans who are more than happy to pounce when they're in an especially vulnerable state and not thinking clearly.


There are times, even if the parents have the best intentions that people need to be protected from the misguided decision making of family members, even if the family members have the purest of intentions.

I think back to the story of the couple (who actually ended up getting in legal trouble) because they went against a doctor's advise and chose to treat their child's meningitis with "natural remedies" rather than allow their child to be admitted and have broad spectrum antibiotics administered. The child ended up dying. That's obviously not what the parents wanted, they sincerely and truly thought they were doing the right thing based on the beliefs they held with regards to conventional vs. alternative medicine.

The common saying of "I'm the parent, I know what's best for my own child" isn't always true. The parents themselves may think deep down in their heart that it's true, but it's not. There's a plethora of examples of parents honestly and truly thinking they're doing what's best for their child (based on their own worldview) that end up being very wrong.

Here's an example that I think may resonate (and one that I'm sure we'd likely agree on)

There's been an uptick of young teens getting put on weight loss drugs or getting bariatric surgeries. (I started a thread about it a few months back, where parents were starting to sign off on their young teens going on Ozempic or getting gastric bypasses)

The parents are willing to pay for it (so it's not inconveniencing anyone else), and they can certainly shop around until they find a doctor/surgeon willing to accept their money for it...and the parents honestly think they're doing the right thing for their 13 year old. Wouldn't it be better if there were some guardrails around that?

 

[Gene2memE]

What the ...? I can't understand? Why does the court gets to decide if a child gets taken off life support? Can even deny offers to extend a child's life by others.

Even if the child will never recover every second that the parents gets to prolong it is irreplaceable.

Monsters! I hope there is a special place in the lake of fire for all the judges.

"Also stop feigning sympathy. You're not very sympathetic either. For there are many unjust deaths around the globe you just have no genuine feeling about. I know it for a fact."

 

[civilwarbuff]

For instance, in my home state of Ohio (not exactly a blue state...and certainly not a state where there's any rationing of care, we have some of the top medical facilities in the world like Cleveland Clinic, UH, MetroHealth, and Summa), here's the statute regarding the matter for when doctors can request a court order to remove life support:

The attending physician and one other physician who examines the patient determine, in good faith, to a reasonable degree of medical certainty, and in accordance with reasonable medical standards, that the patient is in a terminal condition or the patient currently is and for at least the immediately preceding six months has been in a permanently unconscious state, and the attending physician additionally determines, in good faith, to a reasonable degree of medical certainty, and in accordance with reasonable medical standards, that the patient is unable to make informed decisions regarding the administration of life-sustaining treatment and that there is no reasonable possibility that the patient will regain the capacity to make those informed decisions.

Hey Rob
I also live in Ohio (Col) but your quote sounds more like the response to a court question than a statute. What statute number is it? This sounds like one party wants to discontinue life support and another is against it so the court is asking physician input into patient status based on current medical standards.

 

[Pommer]

Hey Rob
I also live in Ohio (Col) but your quote sounds more like the response to a court question than a statute. What statute number is it? This sounds like one party wants to discontinue life support and another is against it so the court is asking physician input into patient status based on current medical standards.

It might be this one?

 

[civilwarbuff]

It might be this one?

That section is almost verbatim except Rob's says 6 month unconscious state and your says 12. Not sure which is more current but yeah probably the same statute. Either way at least in Ohio there seems to be some hoops for someone to jump thru to DC life support. The legal gobblety gookl just makes my head spin.

 

[ThatRobGuy]

That section is almost verbatim except Rob's says 6 month unconscious state and your says 12. Not sure which is more current but yeah probably the same statute. Either way at least in Ohio there seems to be some hoops for someone to jump thru to DC life support. The legal gobblety gookl just makes my head spin.

I'd have to go back through my history and see which link I was on and see what the date was (it was an Ohio government site), the link Pommer provided was from the 2017 version of the statute (and they make changed and addendums), and I can't remember if the one I was looking at was from before or after 2017.

In any case, with regards to the duration of incapacitation, it was either 6 months and they changed it to 12, or it was 12 and they changed it to 6.


Some additional info though with regards to this story.

I had mentioned before that it sounded very similar to the Charlie Gard story from a few years back. Turns out, it appears to be the same condition, or one that's very similar:

Charlie Gard's condition:
“infantile onset encephalomyopathic mitochondrial DNA depletion syndrome” (I know the name is a mouthful)

Indi's is being referred to as "degenerative mitochondrial disease"

So they may have had the exact same thing and they're opting to use an easier way to pronounce it for this more recent story.


But in any case, the prognosis for that disease is not great, and the alternative treatment in question "Nucleoside Bypass Therapy"

It's never been shown to demonstrate any benefit (even in variations that are much less severe).

The entire basis for people wanting to try that treatment was derived from a single child in the US, who had a much less severe (and different) form of the disease that has a prognosis of making it to 18-20 with the conventional treatment, and the parents of that child touted it as "effective" when their child was still alive at 5 years old. (and those parents still did the conventional treatment alongside the experimental one which they got under a compassionate use waiver)

So, in a nutshell, the alternative treatment in question is no more impressive than if I were to say that I invented a new protocol for curing a serious bacterial infection, gave it to someone's kid (but had them use the conventional antibiotics cycle along with it), and then when the antibiotics clear up the infection, proclaim "see! my protocol worked!"

I used this example before back during the Charlie Gard threads:
If you have two kids with severe strep throat.

A conventional doctor gives one Augmentin.

I give the other my new protocol of Ginseng, Chex Mix, and Lemon Juice...but still have them do the standard 10-day augmentin cycle along with it.

The end result is that they'll both be strep-free in 10 days (because of the Augmentin, I can't really tout having a miracle cure in that situation)