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Charlie Gard case raises questions about medical treatment and parental rights

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British parents were denied the right to take their severely ill child to US for experimental treatment.

One headline trumpeted that a European court had sentenced a baby to death.

National Review decried “The Court-Ordered Killing of Charlie Gard.”

Stories homed in on the denial of the parents’ right to take their child to the United States for a treatment that might save him. Social media lit up with dark warnings about what lay ahead for the United States, if it follows the path toward socialized medicine.

The case has gotten so much attention that even the Vatican weighed in.

Charlie Gard himself is unaware of all the controversy that surrounds him as he lies in a bed at Great Ormond Street Hospital in London. But the infant has, no doubt, the full attention of his parents, in what may be his final days, or hours.

Charlie was born last August with an extremely rare, fatal condition called encephalomyopathic mitochondrial DNA depletion syndrome, or MDDS. The boy has severe brain damage, is unable to breathe on his own, and experiences frequent seizures.

In March, doctors decided that there was nothing more they could do for Charlie, and they recommended that his parents, Connie Yates and Chris Gard, withdraw his ventilator. Instead, his parents raised £1.3 million on a crowdfunding site to pay for an experimental treatment in the U.S. The hospital, in accordance with British law, applied to the courts to forestall further treatment, National Review Online said. In April a judge denied the family permission to take Charlie to America. Three Court of Appeal judges upheld the ruling in May and three Supreme Court justices dismissed a further challenge by the parents. On Tuesday, the European Court of Human Rights turned down the family’s final appeal, clearing the way for the hospital to remove life support.

NRO’s Ian Tuttle summarized the case:

According to the Honorable Mr. Justice Nicholas Francis of the High Court’s Family Division, who authored the decision subsequently upheld by the higher courts, death is “in Charlie’s best interests.” There was no “scientific basis” for believing that Charlie would respond positively to the experimental American treatment; meanwhile, there is “unanimity among the experts from whom I have heard that nucleoside therapy cannot reverse structural brain damage.” “If,” wrote Justice Francis, “Charlie’s damaged brain function cannot be improved, as all agree, then how can he be any better off than he is now?” It was “with a heavy heart,” the judge said, that he sided with the doctors. Charlie should be permitted “to die with dignity.”

The BBC reported that the court agreed with hospital specialists that Charlie has no chance of survival. Further treatment would “continue to cause Charlie significant harm,” the court declared.

The Vatican’s Pontifical Academy for Life issued a statement Wednesday saying, “We must do what advances the health of the patient, but we must also accept the limits of medicine and, as stated in paragraph 65 of the Encyclical Evangelium Vitae, avoid aggressive medical procedures that are disproportionate to any expected results or excessively burdensome to the patient or the family. ”

The Catholic Bishops Conference of England and Wales, in its own statement, said, “Sadly, prolonged terminal illness is part of the human condition. We should never act with the deliberate intention to end a human life, including the removal of nutrition and hydration so that death might be achieved. We do, sometimes, however, have to recognize the limitations of what can be done, while always acting humanely in the service of the sick person until the time of natural death occurs.”

For John Brehany, a spokesman for the National Catholic Bioethics Center in the U.S., the news recalled the 2007 case of Emilio Gonzalez in Texas. Emilio was born with Leigh Syndrome, which is also mitochondrial in nature and causes the central nervous system to collapse. The treatment itself was causing pain, he said.

“I remember it being almost counterproductive to continue treating,” Brehany said in an interview. “The doctor said that Emilio was blind and unable to hear since birth. There was no hope for recovery…. There was proposed legislation to force physicians to treat. A doctor said it would cause patients pain and suffering indefinitely, without hope of benefit. This is akin to forcing physicians and nurses to torture their patients.” A hospital director of pastoral care testified that she sometimes saw nurses cry because of the painful things they are forced to do to children to keep them alive when parents can’t let them go.

Hippocrates, Brehany noted, said that the goal of medicine is to “do away with the suffering of the sick and to lessen the violence of their diseases and to refuse to treat those who are overmastered by their diseases, realizing in such cases that medicine is powerless.”

But the other issue in the Charlie Gard case is the fact that the government can prohibit parents to seek treatment for their child elsewhere. The treatment would not be at the public’s expense, as they have raised the money themselves.

“This case came down to the question of who should have the final say over a child,” Matt Walsh opined at The Blaze. “Should it be the parents, or should it be a collection of doctors, judges, and bureaucrats? And if the parents don’t take precedence in a life or death situation, can it really be said that they have rights at all? If I have no say when my child’s very life is at stake, when do I have a say?”

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Bioethics
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