Charlie Gard

[gopher]

WARNING: long(ish) screed to follow :-)

I'm sure most (everyone?) are aware of the case of Charlie Gard. If you are somehow living under a rock and missed it, you can Google him or start with the Wikipedia page for him (https://en.wikipedia.org/wiki/Charlie_Gard_case). I've been having an ongoing Twitter "argument" about this case for a couple of days and wanted to get the INGO take on some of the issues (either real or fabricated) that this case brings up. You can see my Twitter timeline at https://twitter.com/bdw_indiana.

Here are a few of the points of "argument" that I've found with my Twitter "discussions":

1. the UK courts are not part of the "government", so it wasn't the "government" that prevented Charlie Gard from obtaining treatment in the USA. This is just semantics. Whether you want to call the UK courts part of "government" or not doesn't matter; the UK courts still render decisions on cases that are based on UK law as passed by Parliament and enforced by UK government via the police, military, etc. as necessary. If the UK courts weren't part of the "government" then they would be rendering "recommendations" not legally binding "decisions".
2. Charlie Gard's health condition was "futile" and he should be allowed to die in "peace". Charlie's parents are the ones to make the decision, not the UK court system and not the GOSH ("Great Ormond Street Hospital"). Everyone has a right to an opinion on the matter, but no right to impose it on Charlie or his parents. The exception being cases where harm can be shown (more on that later).
3. the USA physician (Dr. Michio Hirano) failed to come to the UK to examine Charlie until it was too late. Perhaps, but is that a reason to withhold treatment? Your personal distaste for Dr. Michio Hirano's actions in this case means Charlie must die? Really?
4. the USA physician (Dr. Michio Hirano) could not provide any certainty that his proposed treatment would help Charlie at all. Again, beside the point. If there is any chance for Charlie to be treated, it is Charlie's parents right to pursue that treatment no matter how slim the chances of it's success. Of course, that is contingent on Charlie's parents ability to personally fund the treatment which they apparently were due to a £1.3 million GoFundMe campaign (https://www.gofundme.com/please-help-to-save-charlies-life). If the parents needed to rely on public funding, then the public (via the courts, if necessary) are involved in deciding whether the expenditure is justified.
5. the USA physican (Dr. Michio Hirano) is a charlatan and only using Charlie Gard to further his research and prominence in the medical fields. Perhaps, but if he manages to cure Charlie I'm sure his parents won't care. Again, this is beside the point; it is Charlie's parents decision.
6. the treatment would have caused him "pain and suffering". If we proscribed all treatment regimens that imposed any kind of "pain and suffering" on the patient then millions more people will be forced to die. I know from personal experience with a MRSA liver infection that treatment often involves "pain". "Suffering" is just a synonym for "pain" except in the context of the pain being imposed as part of a "futile" effort (i.e., it is a loaded term and designed to be appeal to our emotions and desire not to impose "suffering" on anyone).
7. Charlie was too sick to be transported to the USA to receive treatment. Perhaps. However, the court proceedings in the UK went on for months during which time Charlie *may* have been able to be transported to the USA safely. Even if transporting Charlie would present dire risks to his survival, what did he have to lose? The worst that could happen was that he would die, which the GOSH physicians were unanimous agreement was inevitable anyway.
8. parents don't have "absolute" rights over their children. Agreed. However, parents do have *nearly* absolute rights over the welfare of their children (at least, I believe, in the USA; but IANAL). Parents rights end when the child's welfare can be shown to be "harmed" (I believe there are some extenuating circumstances related to what is called "proximate cause"; but, again, IANAL). I have not seen any conclusive evidence that Charlie would have been "harmed" by the proposed USA treatment (more on that later).
9. the treatment was "experimental" and there was no evidence that it would help Charlie. Beside the point. If there was *any* chance the treatment could help Charlie, his parents were entitled to pursue it against the wished of the GOSH physicians.
10. the treatment had not even been done on mice. Beside the point. As long as Charlie's parents were willing to accept the risks of the treatment and there was no evidence that it would harm Charlie, they should be free to pursue it. ALL treatments are "experimental" and "unproven" until someone is treated using the regimen.
11. Charlie would be worse off under the proposed USA treatment than he would be staying at GOSH and going to hospice. Perhaps. Since the treatment was experimental, there were no guarantees of *anything*. However, my understanding of the proposed USA treatment is that it is a "medical" not "surgical" treatment that was unlikely to cause "pain and suffering" to Charlie. In the case that the USA treatment did cause "pain and suffering" in excess to it's benefits to Charlie, he could be taken off the treatment at any time and put on "palliative" care. In short, how would Charlie be worse off under the experimental USA treatment than he was in the UK? The worst case scenario was death, with it being a certainty for the treatment plan that GOSH was proposing. The USA treatment plan at least offering a chance at treating Charlie's condition, however slight.

In short, I believe GOSH and the UK courts greatly overstepped their authority in intervening to prevent the treatment of Charlie by Dr. Michio Hirano.

What does INGO think?

 

[SSGSAD]

I think, that ANYTHING, and EVERYTHING, should have been done to save the child ....

Who PAYS for it .....

OBAMACARE, of course .....

 

[JettaKnight]

I think a downside of insurance is that cost is no longer a factor considered by patients. In addition (and unfortunately), life is now always more important that quality of life.

These must be addressed to get healthcare costs back under control.

 

[gopher]

This is a valid point, but Charlie's parents had raised a substantial amount of money via GoFundMe (or who knows what they had access to via other sources) to pay for the treatment. It would certainly be a different story (and I indicated just that in point #4 in my initial post) if the parents could not afford treatments.

That isn't the case, so I say the parents should be able to pursue whatever treatment they can afford as long as it doesn' harm the child.

I think a downside of insurance is that cost is no longer a factor considered by patients. In addition (and unfortunately), life is now always more important that quality of life.

These must be addressed to get healthcare costs back under control.

 

[hoosierdoc]

I did not really follow this case. But it seems he had an incurable progressive disease that is fatal. Very bad luck. Sucks. Not fair.

The treatment i believe was intended to slow progression and not improve conditions or get him off the ventilator, is that true? If so, I agree it's medical futility.

i've been involved with a few patients who are dying and there is literally zero hope for any cure or really any significant prolonging of life. Or even patients who are completely brain dead and families cannot accept that. They want any possible thing tried. At some point it's abuse and unethical to prolong "life". Hard choices. There will always be these situations and they will become more common as our medical care continues to improve.

if family can raise funds and find providers to care for someone despite medical providers saying it's futile and pointless, more power to them. But I don't think others should be required to pay.

I'm talking extreme cases here, like unresponsive on life support and zero hope of recovery. at that point they are not receiving medical care, they are a science project. it's sad, but it's reality.

 

[hoosierdoc]

At least in the United States doctors have a conscience clause and We're not required to do anything they believe is inappropriate or unjust.

If someone is clinically brain-dead and then on the monitor we noticed they are having a heart attack, they do not go to the Cath Lab. It is medical futility. The family could scream that we are ignoring the heart attack, which is true.

 

[GodFearinGunTotin]

In a free society, a parent would be allowed to pursue any treatment possible, that they could afford, to treat their loved one. (Of course we're assuming they're not doing it out of nefarious intentions). It's none of our business if they're, in our view, wasting their money or squandering their resources. But when we become subject to the taxpayers for providing that care and/or part of a "it takes a village" paradigm of state co-parenting, anything but compassion can be expected from strangers through their bureaucrat servants.

 

[actaeon277]

Even if they couldn't have cured Charlie, they could have worked towards the solution. Solutions are achieved a little at a time.

With a government run health system, you'll be stuck at one period, with no (or very little) progress.

 

[BigBoxaJunk]

This whole thing immediately reminded me of Elian Gonzalez, another kid in an unfortunate circumstance who may have been lost to obscurity but for being caught up in a political fight.

 

[gopher]

if family can raise funds and find providers to care for someone despite medical providers saying it's futile and pointless, more power to them. But I don't think others should be required to pay.

This was exactly the case with Charlie Gard. His parents had raised over £1.3 million via GoFundMe for his care. I'm the first to admit that £1.3 million is probably not going to last long in treating an infant with a complex condition like this, but the parents did have significant resources to pay their sons care and, as far as I know, weren't asking others to pay for the treatment. They were merely asking to be allowed to pursue the alternative treatment at their own expense.

In my mind, it comes down to the GOSH doctors and UK courts effectively saying that they would not allow any alternative treatments due to their unsubstantiated fear that Charlie would incur "pain and suffering" as a result and the attempt would be "futile" anyway. I believe that absent any hard evidence of really serious side-effects of the alternative treatment, that the parents should have been allowed to pursue it.

After all, the end result of prohibiting the alternative treatment was the infant's death. There's not much worse than death...

 

[hoosierdoc]

I don't know, death can be quite compassionate depending on the circumstances.

 

[Shadow8088]

We spend more time proving that we CAN keep someone alive, and less time wondering if we SHOULD keep them alive....

 

[Gary119]

Is his condition a result of a "three parent baby" or is this what was needed?

https://en.wikipedia.org/wiki/Mitochondrial_replacement_therapy

more here

https://www.nature.com/news/genetic-details-of-controversial-three-parent-baby-revealed-1.21761

 

[jamil]

We spend more time proving that we CAN keep someone alive, and less time wondering if we SHOULD keep them alive....

Yeah. But whose call is it?

 

[HoughMade]

I don't know, death can be quite compassionate depending on the circumstances.

It absolutely can.

This case, however, raised the issue as to whether doctors can override parents' decision when someone is willing to treat. Granted, that did not end up being the situation. While I thoroughly support a healthcare provider's right to not be forced to do something they do not believe is ethical, I just as thoroughly support the notion that if someone else is willing to treat, the present doctors, and government in the case of the NHS has no role, whatsoever, in fighting against a transfer.

 

[JettaKnight]

It absolutely can.

This case, however, raised the issue as to whether doctors can override parents' decision when someone is willing to treat. Granted, that did not end up being the situation. While I thoroughly support a healthcare provider's right to not be forced to do something they do not believe is ethical, I just as thoroughly support the notion that if someone else is willing to treat, the present doctors, and government in the case of the NHS has no role, whatsoever, in fighting against a transfer.

Treatment == payment.

In other words, there's always going to be someone to offer treatment regardless of the consequences.

 

[jamil]

Treatment == payment.

In other words, there's always going to be someone to offer treatment regardless of the consequences.

Sure. And that's a negotiation that's up to the family.

 

[HoughMade]

Treatment == payment.

In other words, there's always going to be someone to offer treatment regardless of the consequences.

My experience tells me that this not always the case.

 

[JettaKnight]

My experience tells me that this not always the case.

You obviously haven't been to Brazil.

OK, OK, not always. But there's a doctor willing to operate, just like there's a lawyer willing to sue...

 

[JettaKnight]

Sure. And that's a negotiation that's up to the family.

The problem is... "it's complicated". Complicated by feelings, complicated by hope, complicated by disconnected pricing information, etc.

I'm not arguing one way or the another on "who decides?", just pointing out the points of failure in those negotiations. I would guess that sometimes there must be someone that can look at it impartially.

I guess.