The exploiting of Charlie Gard

In a double-page banner headline, the Daily Mail calls Charlie Gard “the baby boy who moved the world”. I find myself drawn back 20 years to the summer of 1997 when I was thrown out of a tea shop in Monmouth for speaking of the late Princess Diana with insufficient reverence. My mild-mannered head of department and I were sitting, apparently alone, enjoying a cup of tea after a day of pre-term preparation. Tony Blair had spoken of waking up to a kinder, gentler Britain. But on my way through town I had seen people queuing in the square to sign the book of remembrance and the notice in the Oxfam shop opposite that read, ‘Closed for lack of volunteers’. I mentioned this to my colleague as an illustration of the self-indulgent sentimentality of the national response to Diana’s death. He murmured his agreement. A moment later, the proprietor appeared from the kitchen. “If you two are going to talk like that,” she said, “you can finish your tea and get out.”

I thought the country had gone slightly mad and perhaps I was slightly mad too, to mind so much. I was offended by what I experienced as a disproportionate outpouring of grief. But Diana was at least a public figure of constitutional significance. And there were legitimate targets of public anger – the Royal Family that had exploited, neglected and finally closed ranks against her, and the paid stalkers we had learned to call the paparazzi.

In the case of Charlie Gard, the grief expressed by those outside the family circle is more disturbing, and the anger is wildly misdirected. Great Ormond Street Hospital is not the enemy. It hasn’t imprisoned Charlie nor imposed a death sentence on him. Stories about experimental treatments not funded or approved by the NHS but available in America come round regularly. The right wing tabloids present them as heroic battles – the little guy against the system – but they serve the larger purpose of chipping away at our confidence in public healthcare.

Prominent US politicians have made this project explicit. For Vice-President Mike Pence, Charlie Gard’s desperate condition illustrates the dangers of the “single-payer” system favoured by progressives : “the American people oughta reflect on the fact that,” Pence said. “This is where it takes us.” Trump’s message of sympathy and support for Charlie’s parents rises from the same well of ignorance. Meanwhile the ongoing Republican attempts to repeal the moderate Affordable Care Act would put even the most basic health cover beyond the reach of tens of millions of US citizens.

Dr Hirano, who was heralded by the tabloids as a saviour – a lone ranger in a white coat – eagerly accepted his role in the narrative that socialized medicine is a dire fate from which British patients are occasionally fortunate enough to be rescued. Until this week, he was offering a 10% chance of improvement. It was never clear what this meant. If he had treated 100 patients in Charlie’s state and with Charlie’s condition and helped 10 of them he would have had a 10% success rate. But what if he had only treated 18 with a related but different condition and helped half of them but none of were as bad to begin with? Where did he get his 10% from? Let’s just say that with no clinical knowledge of Charlie Gard’s case and no experience with his particular condition he was willing to gamble that he had a slim chance of doing more good than harm.

The fact that Dr Hirano has a financial interest in the drug he’s offering is the kind of abuse that a joined up health service helps to guard against. But the entrepreneurial motive to recruit patients is equally dangerous. (I've written about these things before.)

The doctor was Charlie’s second high-profile American visitor. The Reverend Patrick Mahoney, who flew in to pray at the bedside, came to champion the God-given right of parents to decide the fate of their children. But civilized societies have long recognised that children have rights of their own and that the courts must occasionally intervene to determine what is in the best interests of children who are unable to speak for themselves.   

More surprising was the Pope’s intervention.  The Catholic Church, which tends to go off the deep end on sexual questions, takes a sane view of death. While forbidding euthanasia and assisted suicide, the Church makes a persuasive distinction between “ordinary” and “extraordinary” treatment. Withdrawing food and water to shorten the life of a terminally ill patient is not allowed, even if sustenance must be intravenously delivered. But otherwise keeping a patient alive artificially is not required. According to one account of the official teaching, “When a person has an underlying terminal disease, or their heart, or some other organ, cannot work without mechanical assistance, or a therapy being proposed is dangerous, or has little chance of success, then not using that machine or that therapy results in the person dying from the disease or organ failure they already have. The omission allows nature to takes its course” (The Global Catholic Network).

Even for Catholics, who believe in the sanctity of human life, turning off the machine is sometimes the right thing to do. 

In the summer of 1997 I chose to distance myself from the national mood, but I see now that the wave of grief for Diana was genuine, widespread and largely benign. The feelings the Mail reports and encourages are more divisive, more dependent on the manipulations of the tabloid editors and social media trolls, and considerably more sinister in their political significance.