n May 1994, Ayrton Senna’s racing car hit the wall at nearly 200 mph. He died that day, and all who saw the accident felt sure he had died at the track. Following the custom for motor racing in Italy, Senna was airlifted to hospital and was pronounced dead shortly after. Anyone who dies in action in Italy is deemed to have been ‘murdered’, in a technical sense, and so great efforts are taken to get injured drivers out of the place as quickly as possible.
In October 2014, Jules Bianchi’s racing car hit a tractor in Japan at around 90 mph. Unofficial footage shows the sickening moment when his head hit the immovable object at high speed. Jules Bianchi did not die that day. A year earlier, former racing driver Michael Schumacher crashed while skiing at Christmas. He remains in a very precarious state, reportedly unable to do very much at all. Jules Bianchi eventually died when his life support was turned off in July 2015.
Why the mention of three seemingly unrelated accidents? Modern medicine is a wonderful thing. I have no doubt at all that, had Senna crashed 20 years later, he would have been kept alive artificially, perhaps for years on end.
This weekend, the life support will be turned off for the very young baby, Charlie Gard. He has a condition so rare that only 16 of we 7 billion live humans have it. His family have gone to the ends of the earth to fight for an operation that, they believe, will save him. None of the many doctors involved agree. None of the lawyers or judges agree. Not only is there no hope of survival, but the additional interventions are actually harming and hurting the child. They have tried the UK Supreme Court, and the European Courts. Not a single professional agrees with the parents.
I recently researched the cancer treatment known as proton beam therapy for a novel. Charlie Gard does not have cancer. But proton beam was deemed to be not cost effective for use in the UK. Several places in Europe offer it, and the parents of Ashya King were prosecuted for ‘illegally’ kidnapping their child from his hospital bed so that he could have treatment in Spain. He was eventually treated in Prague and is now cancer free, according to reports, which means that he has for the moment made a 100% recovery. The UK has now changed its stance and has a proton beam machine. Charlie Gard’s condition offers him no prospect of survival at all, even with the experimental treatment that is available in the USA.
What did the racing driver deaths make you think of? Tough luck, they made their decisions and paid the price. Possibly. What about the baby boy? There have been numerous cute photos with cuddly toys in the British press of Charlie Gard. The details of the case are heart rending. Any parent, anyone who knows young children, can at least try to imagine the impossible odds. The futility. The one impossible hope awaiting in America that you know will make no difference. But what if it did? What if your son was the one? Why does the treatment even exist if it does not work? Surely, the logic goes, someone somewhere must think that it works.
That we even have these decisions to make, as a society, is odd. We are the 1%. We are the richest nations on earth. We don’t worry about where the next meal will come from, but rather how to find £1 million for an operation that will not work. And yes, the money was found. Technology helped with that too. It will instead go to research into the condition that ruined Charlie Gard.
This is a difficult time for our health industry. The money has run out. Hard decisions have to be made. There are dark rumours of privatisation, of removing certain ‘non-essential’ services. Should plastic surgery really be free? That is a topic for another day. We lost our free dental checks many years ago. Why shouldn’t we pay a little bit to see a doctor? Especially on a Sunday? These are big topics, especially in the UK, which has prided itself on a comprehensive system that is ‘free at the point of use’, which of course means it is taxpayer funded. I’m no red under the bed, but I love the health service. However it was created when an operation involved biting on a stick and having something chopped off with a DIY saw by a gurning lunatic. Almost. Proton beam therapy could not have been offered in July 1948, and it wasn’t only because it had not been invented yet. There was no money for such space-age wonder. A few swabs and a plaster, yes. And maybe some antibiotics if things went wrong. But that was it.
We have now cured all the really bad, common things, like smallpox. No child here will ever die of TB again. Countless other major killers have been eradicated. This leaves us with the really, really bad stuff. AIDS, cancer, dementia. Very difficult to cure. Very expensive to research. And in many cases, hidden from sight.
These are the difficult decisions our generation will have to make: not who to save, but who to let go. My question, as this dark deadline approaches, is not whether the life support should be turned off in these situations. It is a much harder question: should it even be turned on?