Like millions of other people in the social-media universe, I have been following the tragic story of the infant Charlie Gard (see http://www.charliesfight.org) and the struggle between his British parents and various government and medical elites over his future.
What is there -- journalistically speaking -- to say about mainstream media coverage of this complex story?
The easiest, and certainly the least surprising, thing to say is that a sad story about a baby's fight for life is way more interesting to gatekeepers in major media when Citizen Donald Trump and Pope Francis enter the drama. #SURPRISE
So now we have some pretty in-depth coverage of the story of infant Charlie, his parents and their supporters around the world. Hold that thought.
If you have followed this story closely you know there are religious issues at the heart of this crisis. There are religion ghosts here. The big question: Who loves Charlie the most, his parents or the state? Who should get to make the final decisions about the long-shot efforts to save his life?
The parents are clearly motivated by religious beliefs and want to fight on, defending his right to life. The odds are long, but they have faith in both God and science.
Government leaders, backed by some (not all) medical experts, say they are defending the infant's quality of life and that the state has the ultimate right to end his pain and suffering.
One of the strongest points in a major New York Times story on this case is that it stresses that money is not the issue. The parents have a vast network of supporters -- now including Trump and the Vatican's pediatric hospital -- to help fund further, desperate treatments.
So what is the issue here? The big question appears to be when government experts can trump parental rights and, yes, religious liberty. Thus, I did find it disconcerting that readers did not learn the names of Charlie's parents -- Connie Yates and Chris Gard -- until 650 words or so into the Times story.
Still, the material that made it into this report is strong. Here is a crucial summary passage:
The London hospital that is treating Charlie has asked permission to remove him from life support. His parents want to take him to the United States, where they believe an experimental treatment has a chance -- however remote -- of prolonging his life, even though the disease has no cure.
Three courts in Britain agreed with the hospital, as did the European Court of Human Rights, which last week rejected a last-ditch appeal by Charlie’s parents.
But Pope Francis and Mr. Trump have also weighed in, adding another dimension to an extraordinarily thorny bioethical and legal dispute that pits Britain’s medical and judicial establishment against the wishes of the child’s parents.
Yes, money is not the issue. Treating Charlie will not burden the state or deny care to others who need it.
Charlie’s parents, Connie Yates and Chris Gard, both in their 30s, have been waging a long and wrenching legal battle to keep him alive. They have raised more than 1.3 million pounds, or about $1.7 million, to help finance experimental treatment in the United States. There is also an international campaign, with an online petition, and there have been street protests in front of Buckingham Palace.
So what does the Times team -- representing media elites, in general -- say is the crucial issue here?
Judges in the case have acknowledged that the case highlights differences in law and medicine -- and an American willingness to try anything, however unlikely the possibility of success -- but have held that prolonging the infant’s life would be inhumane and unreasonable.
Charlie has been treated since October at Great Ormond Street Hospital, where doctors eventually decided that withdrawing life support was the only justifiable option. “Although Charlie’s parents have parental responsibility, overriding control is by law vested in the court exercising its independent and objective judgment in the child’s best interests,” the hospital said in a statement laying out its position.
Siding with the hospital were the High Court, on April 11; the Court of Appeal, on May 25; and the Supreme Court of the United Kingdom, on June 8.
The High Court ruled that Charlie would face significant harm if his suffering were to be prolonged without any realistic prospect of improvement.
Here is the puzzle I kept wondering about: The infant's parents have "parental responsibility," but the ultimate authority belongs to the state. Where is that stated, precisely, in British and European Union laws?
In America, this crisis would immediately raise questions about parental rights and religious liberty. Is that not the case in England?
Note this irony, as well: The world of church-state law is full of agonizing cases in which state officials questions whether parents can withhold treatments from their children (think blood transfusions among Jehovah's Witnesses or some Pentecostal Christians insisting on faith healing, alone). But in this case, it is the parents themselves who are pleading for additional treatments that they can fund with their own resources.
In this long news feature, the Times team clearly states:
Claire Fenton-Glynn, a legal scholar at the University of Cambridge who studies children’s rights, said that under British law, the courts were the final arbiter in medical disputes about the treatment of children.
She noted a 2001 case of conjoined twins, Jodie and Mary, who were born sharing an aorta. Separating the twins would lead to the death of the weaker twin; if they were not separated, both would die. A court ruled that the twins should be separated against the wishes of their parents; as expected, one died.
That's an interesting case, only that -- once again -- that is linked to the state backing efforts to use medicine to safe a life, not end it.
Readers can see similar issues in a shorter report offered by Religion News Service. Again, not that the Charlie Gard case is compared with cases in which religious parents want to deny care to a child, as opposed to seeking additional options.
The fight over keeping Charlie alive is not about money. Charlie’s parents have used a crowdfunding website to raise the money needed to pay for his treatment in the U.S. Instead, it revolves around an ethical debate about what’s best for the child.
Under British law, it is normal for courts to intervene when parents and doctors disagree on the treatment of a child -- such as cases where a parent’s religious beliefs prohibit blood transfusions.
The rights of the child take primacy, rather than the rights of parents to make the call. It is a principle that applies even in cases where parents have an alternative point of view, according to Britain’s Court of Appeal.
Thus, government officials and doctors are defending tiny Charlie's right to choose death over suffering through further medical treatments? Did I read that right? That appears to be the bottom line, in mainstream news reports about the case.
Now, if journalists are open to digging deeper into the religious elements of this case, I would recommend them reading a First Things essay by conservative Wesley J. Smith, author of "Culture of Death: The Age of 'Do Harm' Medicine."
The headline on this piece bluntly states the question that troubles him: "Whose Baby is Charlie Gard, Anyway?" After discussing other relevant cases that are, in some ways, similar to this one, Smith cites the case of "Baby Terry," born after twenty-three weeks gestation. Read this carefully:
The ethics committee at the Hurley Medical Center in Flint, Michigan weighed in on August 9, 1993, opining that to honor the parents’ desire to continue Baby Terry’s treatment “would be contrary to medical judgment and to moral and ethical beliefs of physicians caring for the patient” (my emphasis). In other words, when it came to choosing between the values of the parents -- based in large part on their religious faith -- and the values of doctors and hospital bioethicists, the state argued that only the latter matters.
In other words, the moral/ethical standards of leaders linked to the state trumped the moral/religious beliefs of the parents. Right?
Smith then introduces another term that journalists may want to investigate, in terms of its impact on the Charlie Gard story. Again read carefully:
These, Charlie’s, and many other similar cases I could recite, involving profoundly ill people of all ages, are examples of what is known in the bioethics trade as “futile care” or “medical futility” -- or, as I call it, futile-care theory. FCT authorizes doctors to refuse or withdraw wanted life-sustaining medical treatment over the objections of family and patients when the doctors and/or a bioethics committee believe that the patient’s quality of life makes that life not worth living -- or, lurking in the subtext, not worth the resources required to sustain it.
A couple of important points need to be made: We are not talking about an intervention without a potential physiological benefit to the patient -- a medical determination. Rather, FCT constitutes a value judgment. As bioethicist Dr. Stuart Youngner once put it, “futility determinations will inevitably involve value judgments about: (1) whether low probability chances are worth taking; and (2) whether certain lives are of a quality worth living.”
Worse, FCT empowers strangers to make medicine’s most important and intimate health-care decisions. Deciding whether to accept or reject life-sustaining care is one of the most difficult medical choices. Under FCT, a patient’s decision -- whether it be the desire of an infant patient’s guardians or written in an adult patient’s advance directive -- matters less than institutional and professional opinions.
As always, reporters do not need to agree with Smith's analysis of this case. What is crucial is that he has underlined what appears to be a clash between two belief systems linked to ethics, morality and religion.
It's easier to see this collision in the Charlie Gard case because, as journalists keep noting, money is not the issue this time around.
IMAGES: From Charliesfight.org