I'm going to take a wild stab in the dark and posit that the sole reason why the state is fighting tooth and nail to prevent the parents from pursuing an experimental treatment at their own expense has everything to do with the tangential future expense the socialist state would incur if this baby's life were prolonged--and with the precedent it would set for similar financial drains. The government must be seen as compassionate, so it can't very well say to the parents, "Do whatever you think is best, but we're not going to pay for this kid to have a tube up his nose and round-the-clock nursing care for the next 20 years." So they pretend that it's a question of "dignity" and "best interests." The takeaway seems to be that for every social benefit a government provides, the "benefitted" necessarily lose their freedom in equal measure.
BTW, I'm not one of those overly sentimental folks imagining that by virtue of some miraculous experimental treatment this baby will suddenly stand up and walk, but I'm aghast that the government of a western nation would purport to be the only legitimate decisionmaker.
Charlie Gard
Moderator: Global Moderator
Re: Charlie Gard
Wow, I've been buried in work lately and had no idea about this little news item. Even more surprised to find that I know some of the doctors in question, on both sides of the Atlantic.
As per usual for complex medical cases, we are surely not seeing enough information to make an informed judgment. However, I'm a bit concerned that the lure of $1.7 million and the attendant publicity is the main attraction on the American side. If the brain injury described has already occurred, the treatment will accomplish nothing. It sounds like the issue for the London hospital is not the underlying metabolic disease but rather about the baby being brain dead. In which case we have the classic parent-in-total-denial syndrome going on.
This is medicine in the era of social media. These sorts of tragedies happen every day, they just don't usually get publicized like this. And FWIW, I know quite well what happens after the fanfare has died down, the cute baby has grown up, and the severely impaired adult is just one more wheelchair bound, nonverbal nursing home resident.
As per usual for complex medical cases, we are surely not seeing enough information to make an informed judgment. However, I'm a bit concerned that the lure of $1.7 million and the attendant publicity is the main attraction on the American side. If the brain injury described has already occurred, the treatment will accomplish nothing. It sounds like the issue for the London hospital is not the underlying metabolic disease but rather about the baby being brain dead. In which case we have the classic parent-in-total-denial syndrome going on.
This is medicine in the era of social media. These sorts of tragedies happen every day, they just don't usually get publicized like this. And FWIW, I know quite well what happens after the fanfare has died down, the cute baby has grown up, and the severely impaired adult is just one more wheelchair bound, nonverbal nursing home resident.
Re: Charlie Gard
So true. The conspicuous omission in all the news stories is exactly what, under the best of circumstances, this experimental treatment can reasonably be expected to achieve. Have you any idea, WiseOne?
Also, knowing what you do about the proclivity of parents to cling to unreasonable hopes, what do you think of the hospital and court assuming the role of decisionmaker and overriding the wishes of the parents?
Also, knowing what you do about the proclivity of parents to cling to unreasonable hopes, what do you think of the hospital and court assuming the role of decisionmaker and overriding the wishes of the parents?
Re: Charlie Gard
Answer to question 1: Not a lot. The claim of "11%-56% improvement" is entirely theoretical and it's a big stretch to predict outcome when the clinical study has barely started, and has so far achieved a modest improvement in exactly 1 patient (which could simply be the normal fluctuations that these conditions are prone to). "Improvement" can mean a measure of expected increase in muscle strength , or % participants demonstrating any improvement at all, so in reality the expected results are a lot less impressive than you might imagine. Sadly, the parents have interpreted the claim as "10% chance of living a normal life", which is completely unrealistic.Maddy wrote:So true. The conspicuous omission in all the news stories is exactly what, under the best of circumstances, this experimental treatment can reasonably be expected to achieve. Have you any idea, WiseOne?
Also, knowing what you do about the proclivity of parents to cling to unreasonable hopes, what do you think of the hospital and court assuming the role of decisionmaker and overriding the wishes of the parents?
Further, if there's been brain injury from hypoxia, the treatment won't help that. And it seems to be the major issue at this point.
Answer to question 2: The UK government refused to pay the expense of transporting the baby to the US which is entirely reasonable. However, I understand that this is a "rights of the child" case, which is a policy that apparently the US alone did not sign onto. My understanding is that the UK court said that prolonging the life of a brain-dead or vegetative child would be contrary to his interests, and that this overrides the rights of the parents. Maddy you'd know more about this than I do.
My personal opinion on such cases is that it's fine to keep the child on life support and send him for experimental treatments etc if the parents are willing to pay the expenses - because saying no on principle to a highly motivated family member is very, very difficult to defend. This is exactly the way things are in the US for ALS cases, which only differ from this one in that the ALS patients are not in the hospital and can make their own decisions. When the condition gets to the point of interfering with normal breathing, the patients have the option to get home ventilators which insurance will not cover. I guess things are different in the UK because they can't make such private care arrangements, and they keep a tight lid on expenses. Here, this baby would eventually be sent to a SNF or home on a vent after several weeks or months of wrangling with the parents.
Re: Charlie Gard
The court's reliance on the "best interests" standard is farcical. Its own analysis establishes a priori that this baby has no interests that could be vindicated through one course of action or another. Secondly, the "best interests" analysis entirely begs the question as to who, of the various possible surrogate decisionmakers, is most capable of determining what this baby's best interests are.
The real tragedy here, in addition to the obvious, is that the relationship between the hospital and parents has degenerated to a point where it has become abjectly adversarial, and needlessly so. I place the blame squarely on the hospital for that, regardless of how emotionally driven or irrationally quixotic the parents' efforts may be.
If this baby's neurologic condition is such that he has no realistic hope for a sentient existence, what possible harm could be done by allowing the parents to spend their $1.5 million (or whatever it is they have raised) on whatever heroics make them feel that they've done everything possible to save their child? What possible "best interest" justifies the hospital's fighting tooth and nail to prevent that? Why not allow the parents the space to come to their own realization that there's no hope--on their own timetable?
Seems like there's a lot of this going around these days: conflating "being right" with having the authority to tell other people how things are going to be.
The real tragedy here, in addition to the obvious, is that the relationship between the hospital and parents has degenerated to a point where it has become abjectly adversarial, and needlessly so. I place the blame squarely on the hospital for that, regardless of how emotionally driven or irrationally quixotic the parents' efforts may be.
If this baby's neurologic condition is such that he has no realistic hope for a sentient existence, what possible harm could be done by allowing the parents to spend their $1.5 million (or whatever it is they have raised) on whatever heroics make them feel that they've done everything possible to save their child? What possible "best interest" justifies the hospital's fighting tooth and nail to prevent that? Why not allow the parents the space to come to their own realization that there's no hope--on their own timetable?
Seems like there's a lot of this going around these days: conflating "being right" with having the authority to tell other people how things are going to be.