Monday, November 28, 2011

Lungs and liberty

I have just spent a traumatic hour watching Love on the Transplant List, a gut-wrenching documentary about Kirstie Mills, a 21-year-old with cystic fibrosis waiting for a lung transplant. She'd been given six months to live: the average waiting time for donor lungs is twelve to eighteen months.

Kirstie became ill and went into hospital a few days before she was due to get married. She came out of hospital for her wedding day only to go straight back in the day after. Out and back in again after an abortive honeymoon, her condition deteriorated - with two 'false alarms' along the way, where donor lungs became available that weren't a match for her body - to the point where she was on life support and literally hours from death. At the last possible moment, donor lungs became available, and she finally got the transplant. If it was unbearable just to watch, I can only imagine what it must have been like for her family.

The first thing this made me feel was really fucking proud of the NHS. Whether it was her two nurses being there (complete with fascinators) to look after her on her wedding day, or the consultant we'd seen interviewed earlier helping her into an emergency helicopter when she became ill on her honeymoon - the fact that this is how we look after ordinary citizens, for free, is pretty damn amazing. Okay, I'm prepared to believe that the camera crew following them around may have helped things along a bit, but nonetheless - I'm sure there are plenty of countries where someone of average means in that situation just would not have lived to tell the tale. (This burst of NHS patriotism may not be unrelated to the fact that on Friday I saw the awesome Laurence Clark's stand-up show about American healthcare, 'Health Hazard'.)

The second thing this made me feel - in common with most day-to-day experiences these days, it seems - was really fucking angry with David Cameron. Because at the weekend, the Guardian ran a feature where lots of people of varying degrees of fame and fortune got to ask the Prime Minister a question, and one of the questions was about moving to an opt-out system for organ donation. And his response (I'm quoting it in its entirety, in an effort to be fair) was:

"I think it's very difficult to have a policy that basically says if you haven't filled in the form, your organs can be harvested without your permission. It is a huge leap. But there are hospitals and healthcare systems we can learn from that have encouraged people to sign up to make their organs available. So there's a lot we can do without going the whole hog to opt-out."

This is exactly the kind of anaemic, empty libertarianism that really pisses me off. The sort that doesn't stop to think about why we value freedom, or what the consequences of failing to act on something might be, but instead unthinkingly applies the principle that state interference is bad. Effectively, David Cameron is saying that he values the rights of dead people more than he values the rights of living people not to become dead people. Or, to put it another way, he's saying that the right to life is less important than the right not to be interfered with by the state, even if that interference is something which won't affect you until after you are dead, and which you are empowered to reverse.*

But that's just it: in the tradition of thought David Cameron comes from, the right to life doesn't enter into the argument. In the jargon of political thought, it's the old positive/negative liberty debate: negative libertarianism refuses even to ask what effect a given course of action has on someone's freedom to do something, and instead only applies the test of whether it leaves people free from interference.

I've always been sceptical of this principle, and the fact that it's now basically running the country hasn't made me any less so. But it seems to me that organ donation must be one of the most extreme cases, and one that really exposes its emptiness as a basis on which to build your politics. Normally in political debates, the freedom 'to' is a bit nebulous and hard to pin down (the effects of a more generous welfare state on people's lives, for example) while the freedom 'from' is pretty clear (being able to keep more of your lovely money rather than having the state take it away in taxes). But in this case, the 'freedom to' is about as hefty as it gets - the right to life - while the 'freedom from' is paper thin, almost stripped back to the abstract principle, since it doesn't materially affect anyone living and is completely reversible. To continue doggedly applying the same meaningless formula in that situation seems to me like taking blind ideology to a morally and politically irresponsible degree.

* It's annoying that people often talk about an opt-out system as if it was a system of compulsion, which it's explicitly not. It seems to me there's a much, much bigger moral difference between a system of compulsion and a system of opt-out than there is between opt-out and opt-in.

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