Donald Trump offers to help Charlie Gard after UK court rules life support machine to be turned off

[smilesammich 10,727]

5 minutes ago, OriZ said:

I agree they can. And I disagree with them in this case, that's why I brought up what my sister in law did. Nevertheless to me it boils down to how much power are we willing to give the authorities over our decisions concerning our children? As you said the current laws about smoking are only in vehicles(and only with a fine). It might not be on par but I do think it is a classic example of how parents can hurt their children but still their decision to make. Their decision to smoke next to their children can cause a life of suffering or death. Like I said I don't think the doctors are wrong in this case but if the parents believe they are then they shouldn't be forced into blind trust. It might start with something we all know the doctors are right about, but who knows where it ends. 

this in bold goes both ways. parents who believe it's a sin to take their children to conventional doctors and prefer the laying of hands, for example. one size fits all doesn't work when it comes to medicine and treatment, which is why we have experts who weigh in when decisions like these have to be made as bcking was speaking of.

the smoking thing falls more in line with the decisions 'free range' parents make in how they raise their children. i certainly don't want to know 'where it ends' if we increasingly give government the ability to take our children away if a perceived parenting mistake is made.

[Boiler 47,514]

10 minutes ago, yuna628 said:

 

What constitutes proper counseling though?

To let go.

[yuna628 9,873]

11 minutes ago, Boiler said:

To let go.

Can lead a horse to water...  ya know?

It's been well over a year and a half since we lost our dog. It was a terrible first few months, and neither one of us really let go honestly even after the decision was made. We have a new one now, and while he's a nutty sweetie-pie, it's still not the same. I imagine the grief is tenfold when it is a tiny human that both people have made together, a part of them. Some mothers never get over the loss of their children, even during miscarriages, but this process will be worse for these parents due to how much suffering has been endured. This entire experience will have a deeper effect upon their grief and ability to let go.

[bcking 3,157]

1 hour ago, OriZ said:

Parents make many decisions that are against the best interest of their child. I don't see children being taken away from people who, for example(and I gave this example before) smoke around their children, as much as sometimes I wish they would be. Still their (horrible, non parent worthy) decision to make. No offense to you personally but from my experience dealing with doctors many time they are wrong. I am not arguing that they are in this case, just that the parents have the right to believe they are because many times that is the case. If the parents want to still believe there is something they can do I say let them.

There is a line, and people debate where that line is. Current opinion is such that smoking around your children doesn't cross that line, nor does neglecting to have them vaccinated. Some people do believe though that refusing to vaccinate SHOULD cross that line. We wil report to CPS if a mother doesn't take her child to pediatrician appointments (after a certain number of missed appointments it is the doctor's obgligation to report).

 

That fact that what crosses the line is fluid is why there are ethics committees and why they have to go to court. If there was a single set protocol the answer would be easy. It isn't easy, so when there is uncertainty on the part of the doctors they consult ethics, and a committee reviews the case impartially and goes from there.

 

Parents beliefs, unfortunately, can cause serious harm to their child. As pediatricians are duty is to the child, and unfortunately in some cases the state needs to help us perform that duty to protect the child. Perhaps in the future that will include removing them from smoke infested homes.

 

37 minutes ago, yuna628 said:

I understand your position and of course acknowledge what the medical community decides is not taken lightly. But I will still always be libertarian-minded in this regard. Things start getting sticky when the government is in the business of over-ruling personal liberty. It's one reason why I don't believe the government should have any business telling a woman what to do with her body or that of her unborn child. It's further disturbing to me, that the government and hospital could force and over-rule the parents to pull the plug on the infant. It's one thing to rule that whatever treatment they want is useless and not in it's best interests, and quite another to strip all parental rights. I'm very much into ensuring that end of life decisions are written down and very legally clear - for infants this is not possible, but parents are routinely given the right to make decisions on behalf of their children in all things.

 

This isn't personal liberty. This isn't restricting the parent's ability to make a decision for themselves. THere is another living being involved that cannot make decisions for themselves. Parents don't have a god given right to decide everything for their child. People have the right to personal liberty. We afford parents the right to liberty of their children generally because their decisions, while variable, don't cause direct harm to their child without benefit. They are GIVEN that right, as you say. Unfortunately in some circumstances they can lose it. It isn't an unalienable right.

Parents also cannot, in cases of emergency, withhold blood from their child even if they are Jehovah's witnesses. They can refuse it for themselves, but if their child needs it to sustain life it can be given. If there is time you go through a review process before you get the okay, but if there is no time you give it anyway.

 

37 minutes ago, yuna628 said:

 

How do you feel about the Ashya King case? Where a child with cancer was being told the therapy they wanted was unavailable via the NHS and suffered such delays and red-tape the parents fled with him to a different country in order to get him life-saving treatment that would put him into remission. The doctors wanted to use cheaper alternatives that may or may not have had the same effect and is more aggressive on the body. They also believed he was not 'suitable' for the newer treatment. Once there they were arrested for trying to save his life before finally being allowed to go on. The court in this case ruled the parents could continue the treatment elsewhere. After the therapy he remains cancer free though the parents believe he is still not receiving appropriate treatment on the NHS. Were the doctors and the government wrong in this case? Was this family badly treated? Should they have stayed with conventional treatment that may have had the same outcome even though they believed it to be unsafe?

 

I think I remember this csae a little bit. Issues of access to care are very different than the Gard case. GOSH could have gotten access to the "treatment" that is being offered in the USA. They deemed it ethically inappropriate. It wasn't because it cost to much, it was because it wasn't in the interest of the child. I don't recall what made Ashya not "suitable" for the newer treatment and I don't have time right now to look up that case again. 

 

You do bring up another interesting topic regarding "cheaper alternatives". At a certain point the "standard of care" gets redefined such that using cheaper and "inferior" medications becomes unethical. When that point is reached is complicated, and unfortunately it is partly based on where you are. Resources are different in various places and there is a certain practical aspect to it. There are antibiotics that are now "standard of care" in the US and have replaced older antibiotics, and in the UK they continue to use the older ones. That also doesn't really apply here. 

 

37 minutes ago, yuna628 said:

The doctors in the Gard case may be likely 100% correct. The man from Baltimore who advocates that the treatment his child received could help this family may be offering false hope, because his similar condition is not the same condition. But are the hospital and doctors willing to try the treatment also wrong? What makes one group of doctors correct and another wrong? Were there ever any communication between the two facilities? Were they given the opportunity to have proper discussions with all involved?

 

I'm not even remotely related to the case so I don't know the answer to your questions. The crux of the issue, for me at least, in Gard's case is his irreversible brain damage. A lot of things in the body can "heal" over time. Even in the brain certain things can improve overtime. Edema can resolve, blood products, which were producing mass effect, can be reabsorbed and symptoms can improve etc... Cytotoxic brain cell death is irreversible. That is what this mitochondrial disorder has caused. His brain damage will not improve. THe "treatment" being suggested is not a new drug to heal dead brain cells, or create new brain cells. We dont' have those yet (to my knowledge). So even if we now had a cure for his mitochondrial disease, his disease would stop progressing but he would still be where he is at. Based on the information that is publicly available (GOSH has a great FAQ on their website but of course they cannot provide any information that isn't already public knowledge because of privacy laws), his brain damage is extensive and severe, specifically brain stem function which are your core functions. He would live a life on a ventilator (requiring frequent painful suctionings for secretions), with a g-tube, in a chair, being capable of very limited conscious movement. He would be blind, deaf, unable to respond. I've mentioned it before, but he is able to feel pain (as judged by how he reacts during suctioning, ET tube adjustments etc...) then at this point even if his mitochondrial disease were cured he would still be someone who continued care would be painful for him without any benefit.

 

37 minutes ago, yuna628 said:

What constitutes proper counseling though?

There is no amount of counseling unfortunately that can help in some situations. If GOSH is anything like the larger high level NICU's in the USA (I worked at Evelina in London and it functions quite similar to the US NICU's), they would have extensive support from social work, the medical team, faith-based support (if desired), palliative care etc... Before pursuing the ethics committee, and the courts it would have been hours of face to face time talking to them and helping them through it. Is that enough? Clearly not.

 

41 minutes ago, OriZ said:

I agree they can. And I disagree with them in this case, that's why I brought up what my sister in law did. Nevertheless to me it boils down to how much power are we willing to give the authorities over our decisions concerning our children? As you said the current laws about smoking are only in vehicles(and only with a fine). It might not be on par but I do think it is a classic example of how parents can hurt their children but still their decision to make. Their decision to smoke next to their children can cause a life of suffering or death. Like I said I don't think the doctors are wrong in this case but if the parents believe they are then they shouldn't be forced into blind trust. It might start with something we all know the doctors are right about, but who knows where it ends. 

You're right that allowing us to take the rights away from parents can go to far, a "slippery slope" so to speak. The possibility of a "slippery slope" doesn't mean that it shouldn't be done in certain circumstances. It just means we have to be far more cognizant if we continue to our influence.

 

If anything if you look at medicine now versus 40 years ago doctors had MORE autonomy back then over decision making. It was paternalistic so it was never a matter of "we think it is in the best interest of redirecting care", it would have been "we need to redirect care, it is over". Doctors treated a lot of things as set in stone and there were a lot less options. Today we ask permission for everything, and are no longer paternalistic (or are far less).

 

Okay I'm way behind on note writing right now.

[trudi 1,317]

Being told your child is going to die after you have carried, nurtured and loved that child for 9 months is the hardest thing in the world for any parent.

 

It is not comparable to losing a pet, or an elderly relative  ( but I understand the viewpoint ), if I had been told there was a 1 in a billion chance that a trip to the USA for treatment could fix my child I'd have taken those odds and fought tooth and nail to give him that chance.

 

Its an impossible position for the parents, they undoubtedly know that nothing is going to give their son the life they dreamed of but they just can't let go of that hope.

 

Heartbreaking

[OriZ 3,165]

2 hours ago, smilesammich said:

this in bold goes both ways. parents who believe it's a sin to take their children to conventional doctors and prefer the laying of hands, for example. one size fits all doesn't work when it comes to medicine and treatment, which is why we have experts who weigh in when decisions like these have to be made as bcking was speaking of.

the smoking thing falls more in line with the decisions 'free range' parents make in how they raise their children. i certainly don't want to know 'where it ends' if we increasingly give government the ability to take our children away if a perceived parenting mistake is made.

To paraphrase your words from a different thread, suffice it to say that, as I said, I don't agree with the parents here. I strongly believe that as I said in my first post people need to know when to let go. However I try to keep separate my personal opinion and how I see the law working best. 

 

1 hour ago, bcking said:

There is a line, and people debate where that line is. Current opinion is such that smoking around your children doesn't cross that line, nor does neglecting to have them vaccinated. Some people do believe though that refusing to vaccinate SHOULD cross that line. We wil report to CPS if a mother doesn't take her child to pediatrician appointments (after a certain number of missed appointments it is the doctor's obgligation to report).

 

That fact that what crosses the line is fluid is why there are ethics committees and why they have to go to court. If there was a single set protocol the answer would be easy. It isn't easy, so when there is uncertainty on the part of the doctors they consult ethics, and a committee reviews the case impartially and goes from there.

 

Parents beliefs, unfortunately, can cause serious harm to their child. As pediatricians are duty is to the child, and unfortunately in some cases the state needs to help us perform that duty to protect the child. Perhaps in the future that will include removing them from smoke infested homes.

 

 

You're right that allowing us to take the rights away from parents can go to far, a "slippery slope" so to speak. The possibility of a "slippery slope" doesn't mean that it shouldn't be done in certain circumstances. It just means we have to be far more cognizant if we continue to our influence.

 

If anything if you look at medicine now versus 40 years ago doctors had MORE autonomy back then over decision making. It was paternalistic so it was never a matter of "we think it is in the best interest of redirecting care", it would have been "we need to redirect care, it is over". Doctors treated a lot of things as set in stone and there were a lot less options. Today we ask permission for everything, and are no longer paternalistic (or are far less).

 

Okay I'm way behind on note writing right now.

The issue I'm having here, beyond the fact they don't want the child off life support, is there was more than just that to their requests and ALL were denied by the court. I'm just not sure the court was right in denying them all.

Edited July 5, 2017 by OriZ

[bcking 3,157]

17 minutes ago, OriZ said:

To paraphrase your words from a different thread, suffice it to say that, as I said, I don't agree with the parents here. I think people need to know when to let go. However I try to keep separate my personal opinion and how I see the law working best. 

 

The issue I'm having here, beyond the fact they don't want the child off life support, is there was more than just that to their requests and ALL were denied by the court. I'm just not sure the court was right in denying them all.

I'm not familiar enough with the case to know what was requested/denied. I'm applying my experience with similar situations to make some assumptions. What was your understanding of the requests made to the court? 

 

I know the family reached out to the European Court, but I was under the impression it was the hospital that reached out to the UK-based court. Perhaps I am mistaken. Typically it is the hospital "reaching out" to the court (or invoking a specific law if there is one, like TADA in Texas). 

 

My assumption would be there were three primary issues:

 

1. Whether the hospital should continue life-sustaining treatment on a child who has no hope of recovery, and it is neurologically devasted with no quality of life

2. Whether the hospital should allow that child to be transferred across the world to a facility willing to care for the child

3. Whether the hospital should allow the child to be discharged home

 

While I have focused mostly on the fact that I believe it is indeed not only within our right (as physicians) but it is our obligation to sometimes go above parents in the best interest of the child, I will say that the right for the court to rule on point #2 is a little more hazy to me. In the US, or at least in Texas, the family is given time (and help) to find a hospital that is willing to continue treatment. If one can be identified, then the child can be transferred. I'm not sure what would happen if the hospital identified was international.

 

I am aware they have a neurologist willing to give the experimental therapy, I'm not sure if they have a NICU willing to accept the infant. The neurologist can offer to provide the treatment but the infant's condition requires hospitalization unless he is already trached and g-tubed which at least in the photos available he doesn't appear to be. If he needs that first, and the plan would be to treat at home as an outpatient with this neurologist in the USA, then the problem would be whether the doctors/surgeons at GOSH are willing to operate on the child. If not, they would have to find another hospital willing to admit, perform the necessary procedures in order to discharge, and then discharge.

 

The above also applies to point #3. As I've said before one of my biggest problems with cases like this is they get splattered over the media and it allows for random people to make comments like "The hospital won't let him go home" or "We should always fight for life". These comments are ignorant, ill-informed and don't help the conversation. It is not as simple as "The hospital won't let us walk out the door with him", and yet they report it as such.

Edited July 5, 2017 by bcking

[yuna628 9,873]

 

Quote

LONDON — In an abrupt shift, a London hospital said on Friday that it would reconsider its decision to turn off life support for Charlie Gard, a brain-damaged and terminally ill British infant, in light of “fresh evidence” about a potential treatment.{..}

“Two international hospitals and their researchers have communicated to us as late as the last 24 hours that they have fresh evidence about their proposed experimental treatment,” the hospital said in the statement. “And we believe, in common with Charlie’s parents, it is right to explore this evidence.”

 

https://www.nytimes.com/2017/07/07/world/europe/uk-charlie-gard-us-doctor.html

[bcking 3,157]

"There is potential for him to be a completely normal boy, but we don’t know, as you just don’t know until you try,” Connie Yates, Charlie’s mother, said, adding, “There’s around a 10 percent chance of this working for Charlie.” She did not explain how she had arrived at that estimate."

 

I feel really bad for his parents that after all this time, his mother can still say this and believe it.

 

Even at his most optimistic, the neurologist never publicly stated he had any potential to be a "completely normal boy". I highly highly doubt he ever said anything like that to the parents. The fact that she can say that clearly shows that after all of this time the parents still just don't understand.

 

We'll continue to see what happens.