Even if the treatment does not work for Charlie, won’t it help other children in the future?
The courts base their decisions for treatment on what is in Charlie’s best interests, not what is in the best interests of medical science.
I find it incredible that he’s trying to score political points by somehow trying to make this about the NHS. This is purely a medical and judicial matter; as stated in the FAQ, “When parents do not agree about a child’s future treatment, it is standard legal process to ask the courts to make a decision. This is what happened in Charlie’s case.”
What makes it so deeply ironic to try to blame public health care for this heartbreaking situation is that it’s the exact opposite of the reality. It’s private insurance, in pursuit of profits, that routinely denies needed medical care and meddles in the doctor-patient relationship every single day, so that cost and not medical guidance becomes the determiner for what health care is provided. This is not some offhand observation – it’s absolutely intrinsic to how private health insurance is administered. That’s the kind of medical system that is supported by the same screwball ideology that illegally and unethically meddled in the Schiavo case.
It was more than “grandstanding”. The Florida Supreme Court ruled that it was unconstitutional meddling of the executive and legislative branches in a medical and judicial matter in which they had absolutely no business. It’s probably true that if the family conflict had not caused the Schiavo case to become headline news, the meddlesome ideologues both in the Florida legislature and in Congress who abused their legislative authority to overrule sound medical guidance would likely never have heard of Schiavo and would not have had the chance to meddle as they did. So what? What they did was still stupid, unconstitutional, and unethical. And then the following year the same idiots doubled down and the Florida House passed a general bill prohibiting the removal of life support from any patient in a persistent vegetative state, which fortunately was rejected by the Senate.
If it causes the child unnecessary suffering, or just undermines full attention to the best palliative care, then IMO it would be a violation of medical ethics.
Is it a rational reason to subject a dying infant to further suffering? An adult capable of giving consent, sure. A child, unable to so consent? I think not.
Well, the suffering is completely speculative. We can’t assume a very brain damaged infant is “suffering” in the normal meaning of the word. And besides, your perfectly understandable moral stance does not negate the rationality of the case. Pretty sure I know how Spock would land on this.
It’s not particularly speculative to think that a focus on a pointless treatment would detract from the best possible palliative care. It is, in any case, equally if not more speculative to presume that a treatment guaranteed to produce no benefits would have any utility in advancing medical knowledge. If Spock was in favor of experimenting on a dying infant, then he’s a failure as a medical ethicist.
Well, Spock never claimed to be a medical doctor, that was Bones’ job. Unless you thought I meant the baby book guy.
And my point was, for all we know palliative care is of no use either. And no, it’s not mere speculation that the treatment could yield useful findings. Experts in the field have given some hope of some brain function recovery. There are similar conditions that similar treatment has helped.
Everybody who is arguing in favor of no more treatment for the child is somehow managing to overlook how inconsistent their argument is in relation to other medical situations. This quote is merely one example among many.
It is standard procedure for doctors to pressure cancer patients to treat the cancer aggressively.
This sort of thing happens in other types of cases, too. The show “Untold Stories of the ER” tells about doctors who perform CPR on elderly heart attack patients, well past the point where significant brain damage becomes the most likely outcome.
If treating this baby is unethical, then so are great many of the standard medical treatments that nobody seems to blink at.
Well yes, the parents should make the decision in the best interests of the child. But they haven’t, so the state has had to step in. Just as they should if a child is being abused or neglected, or for that matter if they’re being denied medical treatment such as vaccination.
Palliative care is of demonstrable use in that it’s usually pretty evident that it’s contributing to patient comfort. When assessing the wisdom of the alternative – aggressive or experimental treatment – it’s very hard to maintain a balanced perspective and engage in rational rather than wishful thinking.
ETA: I was thinking Spock the Venusian with the funny ears, but my answer works with either interpretation!
The first thing I saw when I clicked on that link was the headline phrase emphasizing that this was happening “despite recommendations [by the American Society of Clinical Oncology]”. And in addition, I’m sure that the data is considerably muddied by different interpretations of what “incurable” means and different opinions on the potential of the aggressive treatments to extend life with some remaining quality.
Having had experience with DNR situations – one of which resulted in a long and illuminating discussion with the head of the acute care unit (aka “ICU”) at a major hospital, I know of what I speak, and so do responsible and compassionate medical professionals. A peaceful passing away at home surrounded by loved ones is vastly different from having doctors jumping on a patient’s chest, breaking their ribs and stabbing them directly in the heart with needles the size of a harpoon, only to have them “recover” with irreversible brain damage and a broken body and tied to a ventilator or intubation for what remains of their non-life.
You don’t drive cancer into remission by being nice about it. However, my experience with cancer doctors is that if a patient decides against treatment they’ll make sure said patient knows the consequences, but they will not force treatment on the patient.
Sometimes patients die in the hospital because that’s the only place their condition can be managed. One can be in hospice and also in the hospital. It’s not the location but the nature of the care that matters.
Unless there is a DNR the ER docs have no choice - they are compelled to try to revive the patient. That is how our laws are written.
It is by having discussions about the difficult cases that opinions, and sometimes laws, are changed. It’s a messy, time-consuming process.
There was never any question of the government’s involvement being legal is what I should have said. The only people who could possibly have legally been ruled to have control over her medical care were her husband and her parents. The hospital had no say, and the politicians, despite the desire to appear to be doing something in front of the cameras, also had no say. When they tried to have a say, “Terri’s Law” was struck down.
See, in the US our legal system is pretty adamant that this is a family decision. In Britain, it’s a state decision.
Wrong again. The Schiavo case in the US properly went through the court system. The Charlie case in the UK properly went through the court system. There is no difference, despite you trying to convince anyone that this has something to do with the NHS. The problem with the Schiavo case was Republican lunatics trying to interfere by abusing the powers of the executive and legislative branches, and then the next year the Florida legislature tried to ram through legislation that would have prohibited caregivers from removing life support from patients in a persistent vegitative state.
And I’ll say again – because apparently you didn’t get it the first time – that the irony of your claim is that the real difference between the US and the UK in this respect is that the US insurance industry literally kills thousands of Americans every year by limiting or denying health care. This is one such story: When Insurers Put Profits Between Doctor and Patient. The unnecessary death of this young woman was the last straw that prompted Wendell Potter to finally resign from CIGNA and turn whistleblower on this sordid industry, testifying before Congress and writing this book. Writing of his testimony before a Senate committee on health insurance industry practices, Potter wrote in his book:
I had quit my job as head of public relations at CIGNA – a job that had paid me deep into six figures – because I could no longer serve in good conscience as a spokesman for an industry whose routine practices amount to a death sentence for thousands of Americans every year.
You want something to worry about, worry about this malignant sordid industry, not about the legitimate role of the judicial system, either in the UK or the US.
The only reason the Schiavo case went to the courts was competing family interests. In this case, there’s no family dispute. The family wants to do everything possible to save their baby. In the US, that would be the end of it.
And it is legitimate for the courts to rule in favor of hospitals over parents? That’s a new one. I don’t think it would ever occur to an American that they could actually take their kid to a hospital and not get their kid back.
So tell me now, wolfpup, should Americans be worried? Is this something a lot of American liberals favor, providers taking kids away from parents because in their judgment it would be better for their child to die?
They didn’t rule in favour of the hospital, (you are so determined to make this about the hospital when everyone can clearly see it’s not. At all!) They ruled in the interest of the child, to prevent further suffering. As they should.
There are competing family interests in the Charlie case, too. It’s astounding to me that you’re so intent on politicizing this that you can’t see it. In every civilized country in the world, the law protects the interests of those who cannot protect themselves – young children, invalids, the mentally disabled. Parental rights are never absolute, and if parents want to put their young child who has no say in the matter through needless pain and suffering, then it’s the legitimate function of the judiciary to weigh the best interests of the child against the parents’ wishes. In the UK this is codified in the Children Act (1989), in the US through the civil rights of children and precedent like Prince v Massachusetts:
… the Supreme Court of the United States held that the government has broad authority to regulate the actions and treatment of children. Parental authority is not absolute and can be permissibly restricted if doing so is in the interests of a child’s welfare.
In this case, it appears that every medical professional who’s been consulted, in several countries and including the American doctor offering the experimental treatment, agrees that Charlie’s case is terminal, and that palliative care is needed to prevent pain and suffering. In no civilized country on earth would parents be allowed to contravene unanimous medical opinion to the serious detriment of their child. Stop trying to politicize this as some socialist conspiracy.
The one thing that is unique among all developed countries is that in the US – and in the US alone – you will be denied necessary medical care if you can’t pay for it, if you don’t have insurance, or if your insurance refuses to pay for it. Know what every American is used to that would never occur to the citizen of any other developed country? That access to health care would be treated as a common utilitarian business – and routinely denied – instead of a basic human right.
