This is our truth, tell us yours
The story of Ashya King, his parents and the disastrous response of social workers and police to his parents’ choices is instructive as well as horrifying.
My doctor, who I regard as a friend, jokes routinely about the extent to which his workload includes patients who have googled their symptoms on the web and who wish him to confirm their diagnosis prior to endorsing their choice of treatment. I am personally, heartily weary of dealing, in my working life, with the diagnostic inflation of people who convert being a bit pissed off into clinical depression. Being a bit pissed off is bad enough, in itself, to merit not turning up for work some days, so spare me the claim that it’s some kind of clinical condition that would merit a full scale intervention by a team of professionals.
Explaining that this isn’t how the diagnostic process works takes up a lot of my doctor’s time. Joke with him about the over-prescribing of antibiotics and he’ll point out, very fairly, that his medical school training wasn’t big on how to tell people to fuck off and take their badly understood googled ‘evidence’ elsewhere. Our troubled relationship with expertise, painfully documented through the MMR scandal in the UK, includes the fact that some experts feel compromised and unable to assert themselves in a meaningful way against our ignorance, prejudice and narcissistic belief that we can become experts by googling. The fact that some people don’t recognise the analogy with the bookmakers fallacy in google results is enough to make any rational man despair.*
I don’t know who’s wrong or right about Ashya King’s treatment protocol. In the absence of other relevant evidence I’d back the oncologists against the parents, but that’s a contestable position to some people. In my case it’s not a position built on deference but on a certain humility on my part; I know that I don’t know enough to contest the oncologists decision, only to test their reasoning and evidence.
Incidentally, being willing to understand the process at work in the way in which a decision is communicated to us is part of that humility. Let me give you an example. There have been spells in recent years where my working practice has been full of engagements with obese middle aged men – I’m one of them, after all. I have written about some aspects of the work here. My GP is kind and friendly; my orthopaedic consultant much less kind. He knows that I am by nature an interventionist, someone who will, when his arthritis gets a little worse, want joint replacement surgery as an interventionist alternative to palliative care. He uses the threat that I will not be allowed surgery if I am too fat to force me to engage with my weight issues – not because he is a bad or nasty person, but because he knows that that is the best way, given my personality, to force me to face up to the consequences of all those sandwiches and all those peanuts. I may make myself feel better by seeing it as being me engaging with my choices because of an issue that may arise in the future, but it is the surgeon forcing me to engage, and to look inside myself at who I want to be, and what shape I want to be, when I am a little older. Similarly, a surgeon telling an old man that he might have to have his balls cut off might also be engaged in a little psychological gamesmanship to ensure the patient engages with the treatment that might prevent the cruellest cut being necessary, and we have to have the humility to acknowledge that that surgeon has been here before, and had the same conversations before, and might have clear ideas rooted in that experience about what works best.
If you back Ashya’s parents against the oncologists, without any other evidence, you’re in an unusual place, believing that the love of a parent for a child outweighs years of training in research skills or medicine. You may also, however, be denying the weight of experience of Ashya’s oncologists, who may be trying to communicate some complex messages about prognosis to Ashya’s parents, messages no parent would want to hear, comprehend or engage with. Some doctors have a deserved reputation for being incapable of communicating on a human level. Those of us who criticize them need to remember the things we ask them to communicate on our behalf. We rarely ask our friends and family to communicate such tough messages, and we need the humility to ask ourselves if the delivery of those tough messages is not undermined by a certain professional disdain, but underpinned by the experience of having to communicate that message so many times.
By way of aside, I had a similar moment when trying to explain to a friend my agreement with the judge who who told a lawyer that if he ever turned up in his court again looking like a character from Harry Potter, he would not be heard. Leave aside that Mr Blacker appears to be a rum cove with a tangential relationship to reality, or the judge’s affectionate reference to Tasker Watkins, the much missed eminence gris of the Welsh judiciary, and consider why Alan Blacker, complete with his shonky medals and his pretentious titles, was in court that day. Overlooked in all the fol de rol about Harry Potter is that the case Blacker was presenting was in defence of a shockingly dangerous driver who, the court decided, killed a man. Present in court were the dead man’s family. The judge may have sounded a little like Mr Justice Cocklecarrot, but do we really want a court hearing such a matter to be reduced to a sideshow of narcissism and vanity by some preening buffoon of an advocate who appears to be long on qualifications and pretentions, but short on humanity and respect for the grieving family? Far from being an old fogey, Mr Justice Morgan may just be a world weary judge trying to protect a process designed to help the victims deal with their grief, and about which far too many victim families have complained in the past.
To return to the Aysha King case, however, the response of the police and the child protection teams, is so spectacularly inept as to be beyond comprehension. It’s hard to discern any humanity in the way in which the process of protecting a child from the follies of its parents was carried out and communicated. It’s hard to discern any attempt to say to the world at large that yes, we too can only grieve and wish that there were to be different outcomes for Ashya. Failing that elementary test, the police pointlessly briefed the press that Ashya’s parents were Jehovah’s Witnesses in an attempt to other them, to set them aside from the rest of us. The inhumanity of that action, the failure of empathy on the part of a justice system that should have sought to stand alongside Ashya’s parents in solidarity against the sadness of the disease and prognosis, will seek again to undermine the role of the expert, even though no-one has seriously questioned the decision of the oncologists that, in Ashya’s case, the option of proton beam therapy was a false hope.
It’s all too easy to choose to rage against the dying of the light. To embrace the dying light, to accept it and to live with it, is harder. The use of court orders and arrest warrant can only fuel rage over love, and makes a bad situation worse. Whatever the fields of expertise of the child protection workers and police who tracked Ashya’s parents to Marbella, there’s precious little evidence that love and humanity are amongst them, and no evidence that they understand anything about positive communications.
*The bookmakers fallacy is the belief that the odds quoted by a bookmaker reflect the likelihood that something will happen. In fact, of course, the odds quoted by bookmakers reflect both the sentiment of the population of gamblers placing bets with the bookmaker, and the need of the bookmaker to balance their books. Probability has nothing to do with it. Similarly, google search results reflect the priorities of google, a corporation keen on balancing its books, just like a bookmaker, and the extent to which the population who search google consume and link to the results.