How much suffering avoided is worth an unnecessary death?
It’s a horrible question, but it’s one that we have to at least try to address honestly. Every day we make this call, or one like it, in lesser and greater ways, in every aspect of our lives. Do we cross at the lights, or jog across? Do we drive a bit faster to get home, or stick to 5mph below the speed limit? We’re implicitly choosing the convenience and pleasure of getting where we’re going quicker, over the slight increased risk of death or injury, for ourselves or others. Do we eat the salad or the burger? You’re choosing pleasure now over an increased risk of heart failure at an unspecified point in the future. Every time you buy or use oil- or coal-based products, you’re increasing the risk of someone in a Nigerian coastal village or a Chinese coal mine being killed (their risk is pretty high already, of course). And that might be entirely reasonable and rational; a decent-sized increase in convenience is often worth a very small increase in risk.
That sort of hideous equation has to go on with the Liverpool Care Pathway (LCP), although I don’t for a second claim to have the solution to it. The Pathway is a system in which patients who are deemed to be dying have treatment and testing stopped; the idea is that since the patients are beyond help, it’s better to allow them to die with as much dignity and as little distress as possible. Since a lot of medical interventions are deeply unpleasant, this can make a lot of sense: for example, if an elderly patient’s heart stops, efforts at CPR might simply break lots of ribs and cause large amounts of suffering for a very short extra period of painful life. The Pathway has been developed by doctors at the Royal Liverpool University Hospital and the city’s Marie Curie hospice, who presumably have seen their fair share of needlessly prolonged suffering.
But we report that in some cases, patients who had been placed on the Pathway have then made full recoveries. And that’s where we reach the uncomfortable decision. In some cases, the Pathway involves taking patients off hydration and nutrition; at that point, you start getting into questions about where “withdrawing treatment” ends and “hastening death” begins. It’s a racing certainty that some patients who might have lived, perhaps for years more, if they weren’t put on the Pathway, have died unnecessarily.
So we need to be honest. What is our position? In medicine, there is an attempt to create a semiobjective measure of the value of suffering and life, the Quality-Adjusted Life Year, or QALY. At its heart is the perfectly sensible idea that we should try to keep people alive for as long as possible, but that we’re doing better if we keep them alive and not suffering than we are if we keep them alive and in pain, or disabled. But even QALY’s most robust defenders would admit that it is problematic: when you start weighting for quality of life, you make a year of, say, a blind man’s life worth less than a year of a fully sighted one, not a position that, say, my blind grandfather (himself a retired GP) would be necessarily comfortable with. And it reaches even bigger problems with the LCP, and any end-of-life decision-making: at its heart is an assumption – one shared, it must be said, by the majority of people – that there comes a point when the quality of life is so low that longer life is no longer a good thing, that QALYs have taken on a negative value.
This is neither a defence of the LCP nor an attack on it. Doctors will always have to make decisions about the end of life; doctors being, sadly, human, they will get some of them wrong. Sometimes people will die or suffer unnecessarily because of those decision. (Incidentally, the best way of reducing the unnecessary death and suffering is to make sure doctors, academics and patients have access to the best information available, something that the pharmaceutical industry and regulatory bodies have been singularly failing at: read Ben Goldacre’s chilling new book Big Pharma for a forensic examination of how that has happened.) If we didn’t have the LCP, we’d have something else – either a different set of guidelines, or no guidelines at all, and under those guidelines (or no guidelines) there would be a different weighting: perhaps fewer people would die unnecessarily, but more would suffer the indignities and agonies of unnaturally prolonged life.
And that’s why we need to be honest about what we want from end-of-life care, and to be honest about the most horrible question that it’s possible to ask: how much is a human life worth? In suffering, in money, in time and inconvenience? I know every bone in our body protests against the taboo of asking that. But if we don’t answer it explicitly, through careful argument and reasoning, then we’ll answer it by accident: pretending that the question isn’t there doesn’t make it go away.
Tom Chivers 