On June 27, the parents of 10-month-old Charlie Gard lost their final appeal to travel to the United States to have him treated for a rare brain disorder. The European Court of Human Rights (EHCR) denied the appeal of London parents Chris Gard and Connie Yates, which means that his life support will be removed and, at some point, he will be allowed to die.
Charlie’s parents raised over £1.4million in private donations via GoFundme to pay for the treatment and their travel expenses. Charlie Gard suffers from a mitochondrial disease that causes muscle weakness and brain damage. His parents wanted to bring him to the United States for experimental nucleoside treatment, but the administrators and doctors at Great Ormond Street Hospital for Children denied the request. Their alternative? Withdraw life support, administer palliative care, and let Charlie “die with dignity.”
Let that sink in a minute: This treatment would have come at no cost to the hospital or the National Health Service (NHS), and would have been covered completely by private donations. They denied the parents their right to determine care for their own child.
Notably, nucleosides are prevalent in breast milk, but in an interview, the couple said they had been denied the ability to give Charlie breast milk while in hospital:
— LG (@laurakinz) June 22, 2017
That’s right. The hospital refused to allow the mother to breast feed her child and refused to allow them to seek alternative treatment on their own dime, at no cost to taxpayers.
Chris and Connie filed appeal after appeal, all the way up to the Supreme Court. The courts sided with the doctors and hospital administrators each time.
The parents are reportedly “utterly distraught.” Social media reactions to the decision were heart-wrenching.
— Catholic State Org. (@LaCatholicState) June 27, 2017
@Fight4Charlie his amazing parents couldn’t have fought any harder – a system that has lost its soul should be ashamed of this decision
— Bev (@bevvyboo22) June 27, 2017
The #CharlieGard case is terrible. Shame on the UK judges allowing him to die, shameful, terrible decision.
— TomDUK (@TomDUK1) June 27, 2017
The decision by the EHCR was as cold as it was final:
Today the European Court of Human Rights has by a majority endorsed in substance the approach by the domestic courts and thus declared the application inadmissible. The decision is final.
The case concerned Charlie Gard, a baby suffering from a rare and fatal genetic disease.
In February 2017, the treating hospital sought a declaration from the domestic courts as to whether it would be lawful to withdraw artificial ventilation and provide Charlie with palliative care.
Charlie’s parents also asked the courts to consider whether it would be in the best interests of their son to undergo experimental treatment in the US.
The domestic courts concluded that it would be lawful for the hospital to withdraw life sustaining treatment because it was likely that Charlie would suffer significant harm if his present suffering was prolonged without any realistic prospect of improvement, and the experimental therapy would be of no effective benefit.
The domestic court decisions had been meticulous, thorough and reviewed at three levels of jurisdiction with clear and extensive reasoning giving relevant and sufficient support for their conclusions; the domestic courts had direct contact with all those concerned.
The domestic courts had concluded, on the basis of extensive, high-quality expert evidence, 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.’
Did you notice that? High-quality experts meticulously determined that staying alive would offer no benefit and would continue to cause Charlie significant harm. His parents were removed from the equation entirely by a single-payer health care system — the NHS — and bureaucrats who know better.
Of course, we already know that the bureaucrats who know better are motivated as much by fiscal concerns as medical concerns. I’ve written many times about QALY — Quality Adjusted Life Years — the model that helps bureaucrats determine how many healthy, taxpaying years a patient has left so that they can pay back into the system. It’s basically a determination of the return on investment on providing care. If you don’t show enough ability to pay back into the system over a prolonged lifetime, care is denied.
Hospital administrators insisted that their decision was humane — to allow Baby Charlie to “die with dignity.” One wonders, however, if in the bowels of the bureaucracy it was determined that the poor boy was likely to suffer from permanent brain damage, and thus become too heavy a burden on society.
Another similar case is playing out in Liverpool. Alfie Evans is a 13-month-old baby in a coma. He’s been unconscious since December, and his parents now believe they will face a similar legal fight just to keep their baby alive. No diagnosis has happened, and no prognosis for the future has been offered. The baby showed signs of delayed development, but doctors dismissed him as a late bloomer. He subsequently suffered seizures and slipped into a coma and has been unconscious ever since.
The doctors are applying increasing pressure on Alfie’s parents to turn off life support.
Death panels have been operating in Great Britain for some time, and reports indicate that the quality of care is further deteriorating in the NHS. It’s incumbent upon every member of our society to determine what we’re going to do about this — both in Great Britain and in America. The Independent Payment Advisory Board (IPAB) is Ezekiel Emanuel’s creation that brings health care rationing to America under Obamacare. Should we fail to act, these ghoulish horrors are what await us too.