BLOGCharlie Gard and the Death of Dignity

By Tom Intorcio Posted on: | July 31, 2017

By now, you have probably heard of the tragic death of Charlie Gard. As Joe Carter of The Gospel Coalition noted prior to his death, “Charlie Gard is an 11-month-old British infant who, a month after he was born (Aug. 4, 2016), was diagnosed with mitochondrial DNA depletion syndrome (MDDS) ... The condition causes brain damage and a progressive weakening of the muscles.”

On July 28, Charlie died after being moved from London’s Great Ormond Street Hospital (GOSH) to a hospice by judicial order so that he could “die with dignity.”

Dignity is “the quality or state of being worthy, honored, or esteemed.” It is difficult to see any dignity in how Charlie was treated by the National Health Service (NHS), the courts, and his court-appointed “guardian.”  No one, however, showed him more dignity than his parents, Chris Gard and Connie Yates.

In March, NHS ruled out experimental treatment as not sufficiently likely to improve his condition. Charlie’s parents objected, saying he should be given a chance to go to the U.S. for care. Through, the family raised over $1.7 million to pay for Charlie to receive an experimental nucleoside therapy in New York.

Charlie’s parents fought in court for permission to take Charlie to Columbia University’s Medical Center. On March 3, NHS officials petitioned a court to rule that Charlie should be taken off life support without parental consent. In April, a judge ruled in NHS’ favor. Charlie’s parents unsuccessfully appealed all the way to the British Supreme Court and to the European Court of Human Rights.

In Parental and Governmental Authority in Medical Decisions: The Tragic Case of Charlie Gard, Melissa Moschella looks at the effects of the case on parental rights. She is an assistant professor of medical ethics at Columbia University, where doctors offered Charlie experimental treatment. NHS went to court to block the family from going to the US—even at their own expense.

Moschella notes that the central question raised is, “Who has the authority to make this controversial medical decision on Charlie’s behalf?” NHS, GOSH, and his court-appointed “guardian” claimed that Charlie’s chances for improvement with experimental treatment were too small and urged removal of his ventilator.

Under English law, when NHS opposes the parents’ wishes, it can petition the court to override them, which the court did—ending life support. The trial judge cited so-called “death with dignity”:

[A]lthough the parents have parental responsibility, overriding control is vested in the court exercising its independent and objective judgment in the child’s best interests [emphasis added]…. I find it is in Charlie’s best interests that I … rule that GOSH may lawfully withdraw all treatment save for palliative care to permit Charlie to die with dignity.

Moschella uncloaks the judge’s edict as a power play and dangerous precedent for parental rights: 

The doctors have admitted that they are not sure whether, or to what extent, Charlie is in fact suffering. Nor are they sure whether, or to what extent, the experimental treatment will cause him suffering.… Further, there is disagreement among medical experts about whether or not the experimental treatment will improve his state.… In this case, the courts are simply substituting their own controversial and uncertain judgment for that of the parents [emphasis added]. And since there is frequently a fair amount of uncertainty and controversy in medical decision-making, the court’s intrusion in this case sets a precedent for extremely broad state interference with parents’ decisions regarding the medical care of their children. Even further, it sets a precedent for state intrusion in all medical decision-making.

She adds:

…[I]n this case the British doctors are not only refusing to provide the requested treatment themselves; they also are seeking to prevent Charlie from receiving treatment from other doctors willing to provide it. They had no real right, therefore—at least from an ethical rather than legal perspective—to take the issue to court in the first place.

Authorities treated Charlie like a ward of the state. The court appointed a guardian to represent Charlie’s “best interests” against his parents’ care. As Moschella explains, “There is no question here of abuse or neglect.… the High Court went out of its way to praise Charlie’s parents … for their exceptional commitment and devotion to their son.”   

Rev. Michael P. Orsi, in the Washington Times, highlighted this heavy-handed intrusion:

The courts and the health care system have claimed custody of the child. A spokesman for the family said Charlie has ‘effectively being [sic] taken prisoner by the NHS and by the state.’ The Gard family has raised nearly $1.8 million…, 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.

As Moschella poignantly observes: “For the UK, Charlie is just one of the millions of children within its realm, but for Connie and Chris, Charlie is a beloved son, with whom they have a unique, permanent, and irreplaceable bond.”

Chris Gard and Connie Yates’ battle for Charlie’s life reminds us that we must remain vigilant in securing and expanding parental rights. While Charlie Gard is no longer with us, his parents’ battle is now our own.

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Tom Intorcio

News Writer and Editor

As a member of the Media Communications Team, Tom drafts news releases, helps produce messaging, and is a contributor to the ADF blog.

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