by Hugh Montgomery
You’re diving a deep wreck far from the European mainland with no access to a decompression chamber and before mobile telephones; what do you do if someone gets ‘the bends’ and is paralyzed? One option: ‘Put them over the side, and report a drowning accident.’ No-one (or so a bunch of young bloods thought) would want to live paralysed. Wind forward two years, and a spinal bend happens. The victim isn’t going over the side, and no-one is actually going to put him there.
Later in my career, I met a patient who had suffered polio whilst on his honeymoon in Kenya. He never walked or breathed off a ventilator after that. He could tell me, however, that he’d had a ‘wonderful life’: he’d read books, watched films, listened to music, and enjoyed the company and conversation of others. He had adjusted to contracted horizons which he may once have thought unbearable. Now, in later life, ‘wear and tear’ prevents me running long distances or climbing at any significant level, and I no longer wish to risk a creaky neck to hard openings when skydiving. To a much lesser extent, I am already having to adjust to the loss of some of life’s joys. It may be that I will find myself living a life I once couldn’t conceive of tolerating, let alone wishing to see extended. Things change.
When at your worst, the decision you make may be different from that when you are feeling well
As a junior doctor, I once had a registrar who believed in ‘sea-sick syndrome’. A ferry is caught in a Force 10, making limited progress across the channel. Confined below, the deck is awash with vomit. Some amongst the pale and green would accept a humane end to it all. But thirty minutes ashore, beer in hand, they’ll tell you that ‘of course they don’t really want to die’. When at your worst, the decision you make may be different from that when you are feeling well.
which of those decisions is made by ‘the real you’?
All this on top of the impact of emotions: we can all think of times when emotion (whether anger, stress, fear, or even lust) has led ‘our friends’ to make decisions which they later view as unwise. What would your advanced directive be now about your wishes if you suffered a C6 cord transection? What would it be at the time? What might it be two years later? (Evidence suggests that you might in fact be well adjusted to your state). And which of those decisions is made by ‘the real you’ and should be considered binding? Is the moment after a birth at 23 weeks gestation the right time to be making decisions that could affect the whole future of your marriage and family, as well as the newborn? And is the decision made then the one that would have been made in advance?
Don’t get me wrong: autonomy is important to us all. But what is ‘informed consent’ when it can change minute-by-minute, hour-by-hour, or year on year?? And when should my decisions- especially with regard to future directives’ be considered ‘final’?