Wednesday, 3 April 2013

Some thoughts on quality and quantity.

The sad news about Iain Banks has gotten me thinking today.

I'll be honest here and say I've never read any of his books (so many books in the world, so little time!). I know nothing at all about him. Yet when I read his statement at work this afternoon, I had tears in my eyes. His words were so dignified, so stoical, and so noble that they really touched my heart. The ability to have humour at such a time is something I admire hugely.

I'm sure his words are the tip of the iceberg. I really can't even begin to understand what a lengthy, horrific process it must be to come to terms with such news. But what struck me most of all was his plans to spend his remaining time with his family, friends and loved ones. Isn't that, when it comes down to it, what we would all want? And yet it seems to me that cases such as his appear to be in the minority of those that are reported in the media.

Many moons ago, at university, I went to a lecture by Sir Michael Rawlins. He discussed the thorny issue of how NICE assess drugs, and he touched upon quality of life measures. I remember being utterly shocked when he said that the majority of terminal patients choose longevity over quality of life. That's always stuck with me, as it seems so starkly counter-intuitive to me that I genuinely can't get my head around it. I also know that's very easy for me to say, and that I have absolutely no idea what it must be like to have to face such decisions. A few years ago I did my Diploma in Therapeutics, and we had to try out some of the quality of life rating scales that are used at NICE. Believe me, this really gets you thinking about how difficult these sorts of choices are. I also remember a really brilliant workshop with Claud Regnard, a palliative care consultant and author of some highly-esteemed books in the field. I remember being bowled over by how positive and creative such a potentially depressing subject could be.

We're a nation (and potentially a planet) that are very medicalised. We hunt for a cure for everything, and a miracle pill to make us cleverer, slimmer, healthier. When given the choice between taking a tablet and changing our lifestyles, I think it's safe to say that most of us would rather opt for the former. This is fuelled by any number of things, but I think the media has a lot to do with it: there's always a story about how some new drug is going to cure Alzheimer's, or obesity, or heart disease, and there's story after story of families desperately searching for a cure or treatment that can cure their love ones.

And here's what I've been thinking about: when all the options have been explored, and there is no cure, practitioners of conventional medicine (by which I mean medicine which is proven to work) will usually tell you so.

At this point, the quest for something else, perfectly understandably, kicks in. Of course you would grasp at any straws, any vestige of hope. And so, right at the time where people should be spending their days doing what they love with the people they love, as Iain Banks is doing, some of them turn to alternatives.

It could be weird diets, it could be homeopathy, it could be a certain well-known quack's clinic in Texas, it doesn't matter. What all of these things do is sell hope when all else has failed. They're a very seductive prospect, and it may well seem perfectly logical that you'd spend every penny in trying them, and you'd leave no stone unturned trying to find the perfect treatment for you, or your loved one.

Just at the time when you should be kicking back and enjoying your time as much as you can, you end up on a plane across the world, which is stressful enough for anyone at the best of times. Or you might end up on a strict diet regime, having to deprive yourself of the foods you love just when you should be enjoying them more than ever. You might end up a slave to a complex regime of megadose vitamins, enemas, pills and injections when you should be being made as comfortable as possible with palliative care.

These people who sell false hope rob patients not only of their money, but of their precious time as well. And that, in my opinion, is the most evil and unforgivable of sins.

I hope that, eventually, we get to a place where a quality life and death become the most important thing to anyone with a terminal illness.

This is yet another blogpost where I feel the need to write "hope this all makes sense" at the end. I probably should just plan posts better, but I've always found I'm usually better at just writing as I think at times. My humble apologies also for any typos... I'm absolutely rubbish at touch screen typing