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.
