Mike Pence is all kinds of mistaken in his view that the tragic case of 11-month-old Charlie Gard, whose ventilator may effectively be switched off by a British judge on Thursday, “is a story of single-payer health care.”
“That’s where it takes us,” the vice president told Rush Limbaugh. No, it isn’t, and if Pence even glanced at the U.K. high court’s April opinion in the case, by the same judge who will make a final call this week, he’d know that the argument here isn’t even tangentially over the allocation of resources.
I do agree with the vice president — and with Pope Francis and President Donald Trump — that Charlie’s parents should be allowed to take their son, whose rare condition saps the energy from his organs and muscles, to the U.S. for treatment so experimental that it has only a theoretical chance of helping him.
In fact, if his parents hadn’t been barred by U.K. and European courts from bringing Charlie here months ago, the promised nucleoside therapy would have had at least a slightly better chance against the boy’s mitochondrial depletion syndrome.
Private funding has been raised, doctors have agreed to try, and to rule that it’s in Charlie’s best interest to deny him and his family even this longest of long shots strikes me as cruel.
The argument on the other side, that he’s been kept on that side of the Atlantic out of a compassionate desire to spare the child the pain of the treatment, doesn’t really hold up since experts acknowledge that the treatment “may, or may not, subject the patient to pain,’’ the judge concluded, though “being ventilated, being suctioned, living as Charlie does, are all capable of causing pain.” Nor are they at all sure he can experience pain.
Though many in the pro-life movement identify with Charlie’s parents, Connie Yates and Chris Gard, they’ve never said they want to keep him alive no matter what: “We aren’t fighting because we cannot bear to lose him,’’ Gard told the court.
“He’s my boy. His doctors have let him seize for seven or eight hours without medication. I would do anything for him. He deserves his chance ... After three months, we would want to see improvement, and if there wasn’t, we would let go.”
For Pence to try to appropriate the family’s suffering by linking it to our health care debate strikes me as almost as disrespectful as an email that came out in court, from one to another of Charlie’s doctors: “Parents are spanner in the works” — a monkey wrench, to use the cliche we prefer — complicating their decision to keep him from leaving the country.
But it’s interesting, too, that their first response was to mull whether they might provide the experimental treatment themselves in London. And that’s not the only evidence that there is at least a little parochialism in the view of the English doctors that it would be better for their patient to die there than to get an extremely unlikely shot at life across the pond.
Are they, as some critics have claimed, afraid the treatment will work? Not exactly, I don’t think, but the whole American system clearly galls them.
The case is so charged that none of the doctors and researchers quoted in court documents are named, but one of the experts it cites notes the “cultural difference in philosophy between treatment in the United States and in the United Kingdom. She said that she tried to have the child at the center of her actions and thoughts whereas in the United States, provided there is funding, they will try anything.”
Though I do think there are some cases in which the state must intervene — to prevent death, not life — this doctor, whoever she is, can’t put the child at the center of her actions and thoughts better than his father, who spends 9:30 a.m. to midnight at his son’s side, or his mother, who is there from 11:30 a.m. to 3 or 4 a.m. the next day. They are the ones who can tell when he’s awake, and know that he likes to be tickled, except on his feet.
But yes, in the United States, we will try anything. As a British-born family friend said in a recent discussion about end-of-life care, “You Americans don’t know when to call it a day.” We never have, and I like that about us.
Melinda Henneberger writes for the Kansas City Star. Connect with her at firstname.lastname@example.org.