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RoseRed135

New chapter in the sad story of little Charlie Gard?

28 posts in this topic

 

I thought about posting this in The Great Debate, due to the controversial nature of the topics involved. But it just seemed too sad for that. But it is "news," so I'm posting it here...

https://www.aol.com/article/news/2017/07/03/donald-trump-offers-to-help-charlie-gard-after-parents-lose-legal-battle-keep-life-support/23014117/

Edited by RoseRed135
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Very sad, it's the first I'm reading about this- I don't know the back story- But my first instinctive response was in the form of a question, which was why can't they bring him here to the US for the procedure/treatment mentioned and my next response was confusion regarding their laws- I was also confused by the recent law passed in Canada regarding how the authorities can take a child away from his or her parents for not identifying with the child's gender preference- Do I have that right? 

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What I don't get is why is the government  being so hard nosed about it and not letting the child die at home.  It's not that hard.  Move the ventilator and the kid.  Put him in his favorite spot in his home.  Give them a few hours (days?) and then DC the vent.  The parents sounded like they would agree to Dcing the vent= they just wanted it done at home.  It sounds like so little to me to make the parents happy.

This is my opinion based on the article.  I didn't read the times on

Edited by skipped

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The Times article expands on the parents wanting to move the baby to the US for experimental treatment to prolong his life. The UK is basing their decisions on medical opinion of "no hope". The US medical opinion is that new treatment will likely not produce any significant change, but they are willing to accommodate the parents. Italy has also offered to take the family. Its an ethical decision. 

Personally, I can't imagine how hard it would be let my child die. However, the big picture here clearly shows very little to no quality of life for the child moving forward. 

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49 minutes ago, Mame925 said:

 Its an ethical decision. 

Personally, I can't imagine how hard it would be let my child die. However, the big picture here clearly shows very little to no quality of life for the child moving forward. 

Read both articles. I'm wondering how such a fragile child, can not have some negative effects on the long journey from London to US. I really have no medical experience , but  I do have personal experience, with an infant child with what drs considered an inherited condition.  ( Just recently be found to be linked to Agent Orange  from Vietnam )

The worst thing I read in these articles is treatment experimental. The most wonderful thing I read is the toddler my have more time.

It's all personal.

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I'm not a 'life at all costs' person. Existence isn't enough, imo.

But, I get to be all hypothetical and logical and removed, b/c it's not my child. I don't know what I'd do in the parent's shoes, but I *hope* I would put what's in the best interest of the child as being the first, the only subject worth consideration.

What I've read says the child is suffering, and is in pain, and will not recover. As i sit here, not having to make that decision for one of my children, my heart says that it is not in Charlie's best interest for his life to be prolonged by any means available.

But I have healthy kids, rampaging around, noisy, active and vivid in their well being. I'm not Charlie's parent.

 

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14 hours ago, skipped said:

What I don't get is why is the government  being so hard nosed about it and not letting the child die at home.  It's not that hard.  Move the ventilator and the kid.  Put him in his favorite spot in his home.  Give them a few hours (days?) and then DC the vent.  The parents sounded like they would agree to Dcing the vent= they just wanted it done at home.  It sounds like so little to me to make the parents happy.

This is my opinion based on the article.  I didn't read the times on

What comes to mind first off is cost- And keeping the cost "in" the hospital- Hospitals are business first above all things-

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17 hours ago, Komorebi said:

What comes to mind first off is cost- And keeping the cost "in" the hospital- Hospitals are business first above all things-

 

17 hours ago, Komorebi said:

What comes to mind first off is cost- And keeping the cost "in" the hospital- Hospitals are business first above all things-

Maybe they could use the "go fund me" money so the child can die at home.

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14 minutes ago, skipped said:

 

Maybe they could use the "go fund me" money so the child can die at home.

Ive no idea how go fund me works- Are the parents even allowed, by law, to take him out of the hospital? If not .. then .. I just dont know .. 

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GoFundMe is a very simple process, but there are two different issues at play here. If they simply want to take their child home to die, I doubt the hospital would challenge that, a it is a cost effective solution; however, I have no idea what the UK position on taking him home AMA would be. If the hospital is trying to keep them from taking him out of the country, I don't think that should be their business.

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On 7/4/2017 at 2:31 AM, Mame925 said:

There is much more to this story than what Rose has posted...Here is the NY Times expanded info/discussion

https://www.nytimes.com/2017/07/03/world/europe/uk-trump-pope-francis-charlie-gard.html

The nature of this condition suggests no hope. I understand how hard it would be for the parents to actually make this decision.

Thanks for providing the more thorough article, Mame.

No doubt, it's a difficult decision for any parent.

Edited by RoseRed135

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On 7/4/2017 at 1:05 PM, Mame925 said:

The Times article expands on the parents wanting to move the baby to the US for experimental treatment to prolong his life. The UK is basing their decisions on medical opinion of "no hope". The US medical opinion is that new treatment will likely not produce any significant change, but they are willing to accommodate the parents. Italy has also offered to take the family. Its an ethical decision. 

 

Also, apparently, there are legal differences. According to the NYT article, " under British law, the courts were the final arbiter in medical disputes about the treatment of children...  Courts in the United States are less inclined to get involved when there are disputes between parents and doctors..." Here in the U.S. it seems it's "usually left to doctors, in consultation with parents, to decide on a child’s treatment."

Meanwhile, IMO, the use of the word "compassion" in the AOL article is an interesting one. It seems to me that there is actually compassion on both sides of the argument - compassion for the child v. compassion for the parents. Both views are understandable, IMO.

Personally, as deeply as I feel for the parents, I favor compassion for the child. And for that reason, I agree w/ the British hospital and courts that it's time to let Charlie go, as heartbreaking as that is for the parents. No sense, in my view, to try to prolong his life if it means prolonging his suffering, too.

But like Imp, I know I'm (fortunately) not a parent in this situation and don't know how I would feel if I were.

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I know kids aren't the same as my dogs. I know this. I didn't carry my dogs for 9 months, teach them to speak (well, not beyond their limited vocabulary, anyway) and they're not my same species (so a bit less intrinsic empathy).

When our furbabies become very, very sick, we do what we can....but if they're mostly miserable and/or in pain, the compassionate, selfless thing we do is let them go over the rainbow bridge, as is the inevitable result of all life on this planet.

I don't know what I'd do in this case if I was the parent, but sometimes I think medical heroics can go too far and create impossible expectations regarding the prolonging of life.

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DS' beloved MIL passed earlier this week. She was in her mid 70s, lovely woman, retired educator. Her health had been in serious decline over the past 10+ years, including a successful liver transplant followed by kidney failure and multiple years of dialysis. Just before Christmas she contracted viral meningitis resulting in a coma for several weeks but only marginal recovery. She was lucid so elected to continue treatment to see if there could be some physical recovery. There was more backsliding than improvement. Two weeks ago DIL & her DB made the very difficult decision to discontinue her treatment (dialysis, feeding tube, etc). It became a quality of life issue based on how well they knew their mother. I totally supported the decision. Sometimes it's past time to just let go...

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Sorry, I have to make this political.  That's what is different in an environment of government run health care vs our current system.  We are currently willing to spend money on curing the uncureable.   People call this "death squads".  I think it is in the patients best interest as well as the systems. Every single day there is at least one if not more patients I see around me receiving futile care (I work in an ICU).  Usually the families don't just get it.  Sometimes families don't want the responsibility for making decisions.  Some do it purposefully for financial abuse.  (One person wanted their mother on the vent so she would get her 100 year birthday card  from the president). Occassionally it's cultural. Sometimes it's the doctors fault because his ego won't let him admit that there is nothing he can do about the situation.  Sometimes doctors don't think it's their place to play god and help the families decide.    Most people eventually see the light.  Usually it's when their Medicaire days are out and they have to write the check themselves.

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7 hours ago, skipped said:

Sorry, I have to make this political.  That's what is different in an environment of government run health care vs our current system.  We are currently willing to spend money on curing the uncureable.   People call this "death squads".  I think it is in the patients best interest as well as the systems. Every single day there is at least one if not more patients I see around me receiving futile care (I work in an ICU).  Usually the families don't just get it.  Sometimes families don't want the responsibility for making decisions.  Some do it purposefully for financial abuse.  (One person wanted their mother on the vent so she would get her 100 year birthday card  from the president). Occassionally it's cultural. Sometimes it's the doctors fault because his ego won't let him admit that there is nothing he can do about the situation.  Sometimes doctors don't think it's their place to play god and help the families decide.    Most people eventually see the light.  Usually it's when their Medicaire days are out and they have to write the check themselves.

As someone who lives, and has worked in the UHC system, my experience is very different.

Nobody here gets told to 'pull the plug'. I've worked with 90+ yos, who have end stage Alzheimer's, who's family insists on all measures to be taken. And they are.

Nobody is ever told, "It's not cost effective, we're not doing this." when it comes to life support. I've genuinely never heard of a situation like the one Charlie and his parents are in, in which the hospital is requesting to end life support, and I have watched extremely good friends struggle with the decision that faces Charlie's parents. They never received anything but support from the hospital, Drs and staff. 

I obviously cannot speak for the UK, b/c I've never lived or worked in or with their health care, but I've never heard of a similar situation here hitting the courts.

Now, I *have* heard of Drs having a very blunt, frank discussion w/families, telling them, "There's nothing more we can do." but I don't see that being a funding issue, but a human one. There comes a time where there really ISN'T anything more to be done.

Further, upon rereading the article, I would point out that it doesn't seem to be a UHC issue in this case either. It appears that the Drs and hospital believe that keeping Charlie alive is prolonging his suffering with no hope of improvement or recovery. It seems that the motive, of the Drs/hospital and court, is to end the child's pain, and that they believe that the current and ongoing treatment is causing the child harm. "First, do no harm" is one of the statments in the Hippocratic Oath.
The High Court ruled that Charlie would face significant harm if his suffering were to be prolonged without any realistic prospect of improvement. Moreover, it said the experimental treatment, known as nucleoside therapy, would not be effective.

The Court of Human Rights ruled last week that the British courts had acted appropriately in concluding that “it was most likely Charlie was being exposed to continued pain, suffering and distress, and that undergoing experimental treatment with no prospects of success would offer no benefit, and continue to cause him significant harm.”

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17 hours ago, skipped said:

Sorry, I have to make this political.  That's what is different in an environment of government run health care vs our current system.  We are currently willing to spend money on curing the uncureable.   People call this "death squads".  I think it is in the patients best interest as well as the systems. Every single day there is at least one if not more patients I see around me receiving futile care (I work in an ICU).  Usually the families don't just get it.  Sometimes families don't want the responsibility for making decisions.  Some do it purposefully for financial abuse.  (One person wanted their mother on the vent so she would get her 100 year birthday card  from the president). Occassionally it's cultural. Sometimes it's the doctors fault because his ego won't let him admit that there is nothing he can do about the situation.  Sometimes doctors don't think it's their place to play god and help the families decide.    Most people eventually see the light.  Usually it's when their Medicaire days are out and they have to write the check themselves.

The bolded. Ugh. So wrong. And so sad. I imagine you see a lot of crazy caca go down, Skipped.

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Well, poor little Charlie Gard has passed away. But, unfortunately, even how/where he died prompted a legal battle:

http://www.cnn.com/2017/07/28/health/charlie-gard-death/index.html

I just hope and pray the little fellow can now rest in peace and his parents can find some peace, as well...

 

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"Mummy and Daddy love you so much Charlie, we always have and we always will and we are so sorry that we couldn't save you. We had the chance but we weren't allowed to give you that chance. Sweet dreams baby. Sleep tight our beautiful little boy,"

I wish they were granted permission to take their son home to die- I find it difficult to wrap my head around that I just typed that parents needed permission to bring their child home to die .. it's a crazy practice that people pay into a healthcare system then in turn for doing so are told what they can or cannot do with their own child ..

Rest in peace little Charlie Gard ..

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They should have been able to take him home to die if that's their choice. However, if medical personnel needed to accompany them to manage all the equipment, wouldn't it be easier to stay in the hospice unit, disconnect everything and let it be? I didn't want DH to die at home...turns out he didn't, which was a mixed bag for him, but a relief for me. 

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12 hours ago, Komorebi said:

"Mummy and Daddy love you so much Charlie, we always have and we always will and we are so sorry that we couldn't save you. We had the chance but we weren't allowed to give you that chance. Sweet dreams baby. Sleep tight our beautiful little boy,"

I wish they were granted permission to take their son home to die- I find it difficult to wrap my head around that I just typed that parents needed permission to bring their child home to die .. it's a crazy practice that people pay into a healthcare system then in turn for doing so are told what they can or cannot do with their own child ..

Rest in peace little Charlie Gard ..

The court wasn't making a nosy parenting decison. It was literally not logistically feasible to move the child home to die. His parents live in a London flat and the baby was on full life support, had been for months...the child had little brain activity and was literally being Leo alive entirely but machines. Full ventilators (which are big and draw lots of power), plus being hooked up to IVs, feeding tubes, monitors and constant pain med drips. How would all of that been moved upstairs to their flat? All of that requires round the clock monitoring by nursing staff and specialists, which the parents were willing to pay to have, but the circumstances set that theoretical team up for a series of ethical quandaries and potential issues. For example, what if the parents then refuse to let them end life support? What then? How do these parents vet the credentals of Drs and nurses to form this in-home team? And frankly I think most medical professionals qualified to perform the job probably thought that this moving-home-to-die plan was, as the court deemed, not in charlies best interest. The judge gave them the chance to find an appropriate medical team, with huge media fire power behind the call for professionals to come forward, and no one qualified came forward.

There was a time when the baby might've been able to pass away at home, but once you employ extraordinary measures to keep a person alive for an extended amount of time, then it's not a simple process to just let that person go. To avoid suffering, processes and procedures have to be followed.

i am a parent and there, but for the grace of God, go I. I know these young parents loved their son and did what they believed was best, they fought for him. But what is right is not always what's easy or what feels good or what we want. Sometimes RIGHT is doing the hard, unpretty, painfully horrifying thing because it's what the person in question needs. The parents were not the person in question...Charlie was the person whose needs mattered most and he needed to be allowed to die in the most humane way possible, which did not include a dramatic and logistically insane trip "home" to mollify his parents. And hospice is a lovely service, filled with folks and systems that respectfully and compassionately support families through death. 

The court made the night call in a situation where the parents were (understandably) too close and too grief stricken to choose wisely for their terminally ill child.

Edited by Skatie21

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19 hours ago, Skatie21 said:

The court wasn't making a nosy parenting decison. It was literally not logistically feasible to move the child home to die. His parents live in a London flat and the baby was on full life support, had been for months...the child had little brain activity and was literally being Leo alive entirely but machines. Full ventilators (which are big and draw lots of power), plus being hooked up to IVs, feeding tubes, monitors and constant pain med drips. How would all of that been moved upstairs to their flat? All of that requires round the clock monitoring by nursing staff and specialists, which the parents were willing to pay to have, but the circumstances set that theoretical team up for a series of ethical quandaries and potential issues. For example, what if the parents then refuse to let them end life support? What then? How do these parents vet the credentals of Drs and nurses to form this in-home team? And frankly I think most medical professionals qualified to perform the job probably thought that this moving-home-to-die plan was, as the court deemed, not in charlies best interest. The judge gave them the chance to find an appropriate medical team, with huge media fire power behind the call for professionals to come forward, and no one qualified came forward.

There was a time when the baby might've been able to pass away at home, but once you employ extraordinary measures to keep a person alive for an extended amount of time, then it's not a simple process to just let that person go. To avoid suffering, processes and procedures have to be followed.

i am a parent and there, but for the grace of God, go I. I know these young parents loved their son and did what they believed was best, they fought for him. But what is right is not always what's easy or what feels good or what we want. Sometimes RIGHT is doing the hard, unpretty, painfully horrifying thing because it's what the person in question needs. The parents were not the person in question...Charlie was the person whose needs mattered most and he needed to be allowed to die in the most humane way possible, which did not include a dramatic and logistically insane trip "home" to mollify his parents. And hospice is a lovely service, filled with folks and systems that respectfully and compassionately support families through death. 

The court made the night call in a situation where the parents were (understandably) too close and too grief stricken to choose wisely for their terminally ill child.

I understand completely .. But it's still difficult to wrap my head around .. They moved Otto Warmbier all the way from N. Korea to Cincinnati ..

I do think a team was put together to move him home, but it was vetoed- 

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From an ICU nurses perspective.  I don't think it's that hard to send people home on a vent.  We've done it before.  Ventilators are smaller than you think We call them portable ventilators..  We do have some clients, who live at home on vents with home care.  Their families are trained to deal with them..  If you can live at home on a vent you can die at home on a vent.    I would imagine (don't know for sure), it would have been cheaper to send Charlie  home for 2 hours on a vent, not to mention kinder, than to keep him all those days in an ICU fighting with his parents.  It sounded to me when I read the article, this whole thing would have been over a lot sooner, if the hospital would have agreed to let the child die at home.

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54 minutes ago, Komorebi said:

I understand completely .. But it's still difficult to wrap my head around .. They moved Otto Warmbier all the way from N. Korea to Cincinnati ..

I do think a team was put together to move him home, but it was vetoed- 

1. Otto Warmbier was not on life support when he was moved. He was unresponsive and semi comatose but was breathing independently. Charlie Gard could not breathe without constant  full ventilation. Otto Warmbiet had brain damage as a result of trauma. Charlie Gard had virtually no neurological function...he wasbrain dead...resulting from terminal genetic illness. There's a rather large difference between their two individual conditions.

2. Apparently any team assembled was not qualified. It matters if thy are qualified, not just willing

Edited by Skatie21

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