Charlie Gard case shows overreach of state on medical care

OPINION:

The sad news broke Monday that Charlie Gard’s parents have given up the fight to save their 11-month-old baby’s life. “The window of opportunity has been lost,” due to time wasted in the parents’ legal battles to save the child’s life. “It’s too late for Charlie,” family attorney Grant Armstrong said. “The damage has been done.”

The epic battle brought together Pope Francis, President Trump and Congress. They all rallied to help the Gard family save the child, who is suffering from a rare disease. Charlie and his family received abysmal treatment from England’s state-run health care system and European courts. Mr. Trump invited Charlie to the United States for treatment, Congress voted to give the baby permanent resident status in the United States, and the pope offered to provide care for the child at a Vatican-run hospital in Rome. But what’s happened to Charlie and his parents has broad moral, legal and ethical implications for all of us — especially as Congress grapples with repealing and replacing the Affordable Care Act.

I’ve often been called to minister to the sick and dying, but the case of Charlie Gard is rare. His condition, mitochondria DNA depletion syndrome, affects the involuntary muscle system. Charlie cannot breathe or swallow on his own, and he is also blind and deaf. He has been kept alive at one of England’s state-run National Health Service (NHS) hospitals. If he had been in one of the country’s private facilities, his situation would certainly be much different.

In 1951, Pope Pius XII gave an address to an association of Italian midwives, and from this talk we’ve garnered some very reasonable guidelines on end-of-life issues. Pope Pius talked about “extraordinary” and “ordinary” means of preserving life. He said that extraordinary means are treatments deemed too painful, too costly, too burdensome (repulsive), or too exotic (experimental). We use these criteria to decide whether or not to accept treatment to prolong our lives. All treatment that is not extraordinary is deemed “ordinary” means.

Now in the case of Charlie Gard, he has been kept alive by a respirator and a feeding tube. When there is no hope of improving a patient’s condition, this might be considered extraordinary means. There are only 16 reported cases of Charlie’s disease in the world, and there’s only a 10 percent chance of some improvement. There is no cure. So how far does the state have to go to preserve the life? Does it fall under extraordinary means? Yes. Is there any hope of recovery? No.

The NHS is well within the law — and moral law — to withdraw extraordinary means. Charlie’s case went to Britain’s High Court and the European Court of Human Rights. Both said the state has the right to withdraw the extraordinary means used on the baby. But the real moral and ethical problem is this: The courts and the health care system have claimed custody of the child. A spokesman for the family said Charlie has “effectively being taken prisoner by the NHS and by the state.” The Gard family has raised nearly $1.8 million through an online-giving campaign, but the state has refused to release custody of the child to his biological parents who have the moral right to determine what happens to him.

There are implications here for all of us, especially if we’re in a situation where we’re faced with choosing or rejecting extraordinary means. At this point, Americans are able to make many of these decisions themselves. But when citizens cede their decision-making to the government and a state-run health care system, they could end up fighting for life like Charlie Gard. State-run systems make algorithm calculations based on “quality of life,” which is defined by the state. You might have a state determining that those with a physical or mental illness don’t have “quality of life.” The state could refuse treatment or even move to positive euthanasia and decide to end a person’s life.

We have to be careful of government overreach in health care, especially as Congress works to repeal and replace the Affordable Care Act. We must scrutinize any new legislation so we don’t cede to the government more than the government deserves. Failing to do so can lead to the state making decisions over life and death rather than the parents, where the natural rights belong.

• Rev. Michael P. Orsi a parochial vicar at St. Agnes Parish in Naples, Fla., and is a former chaplain and research fellow at Ave Maria School of Law.