Sir Andrew Dillon, the erstwhile leader of NICE as said that it is irrational for the Cancer Drug Fund to pay for drugs that NICE has turned down.
He’s right of course, it is irrational but is it wrong?
The problem for Sir Andrew, and like-minded people, is that there is another logic that trumps NICE’s rational world. Don’t get me wrong. NICE performs a useful, but technocratic, function with analytical assessments that any rational person would indeed want to know. Where we part company is believing that NICE’s logic is the final word on the matter. Which it isn’t.
Tasked, perhaps unenviably, with parsing the performance of medicines and clinical practice cannot also mean that they are above challenge. Many of NICE’s rulings fly in the face, not of logic, but of our beliefs as humans. It is why we do things when the odds are against us, because not to do so would be wrong. If we think of the challenges NICE faces as wicked problems, that is complex problems with a multiplicity of solutions, it becomes self-evident that their logic is just one way of deciding and choosing.
We could use other rules, other criteria. The Cancer Drug Fund is an example where money is ring-fenced to avoid the NICE logic. It is another matter whether we should have in place alternative funding approaches that individuals can avail themselves of (such as co-payments or co-insurance); for extraordinarily costly therapies, co-funding would not apply, so we’ll back to the problem anyway.
NICE has a troublesome relationship with the notion of ‘rule of rescue’ and so has decided to ignore it. There replacement, the “end-of-life premium” is really just a reweighting of the logic they use.
The rule of rescue is what we might call a meta-rule — it is a rule that tells us if other rules are working properly, and importantly, as a moral imperative which tells us what to do when faced with a dilemma.
The rule is often invoked in a particular form: that people facing death should be treated regardless of cost. The rule as originally formulated is really about assisting identifiable individuals facing avoidable death (Jonson, 1986); the bioethicists and economists have shifted this to a cost-effectiveness approach, making it one about trade-offs instead.
The problem for healthcare systems is that all patients are becoming identifiable as medicines become personalised (medicines may become orphan drugs). The problem for the healthcare systems arises when they do not allow such people to rescue themselves because of ideological or administrative criteria that prohibit co-funding or other similar arrangements; let’s think of them as state-imposed monopolies (e.g. Canada’s single payer system is a good example, but also the NHS which draws air from NICE). The only option is an opt-out from this state-imposed restriction, but purely private medical insurance has rules about pre-existing conditions so it is an reliable opt-in; frequently, charities step in, but this isn’t really a way to construct a health policy worth defending.
Given the funding priorities of pretty well all healthcare systems, we should be reflecting not so much on how to make the pot bigger, but on using the money that is available better (there will never be enough money), and consider ways to introduce practical co-funding.
Since individuals have no other options in these systems , the rule of rescue as a moral imperative will be violated and we will find ourselves acting, not out of analytical error (i.e. make a technical mistake), but unethically. You see, a monopolist state-mandated healthcare system of any sort must be the healthcare system of last resort and therefore of rescue, otherwise, identified individuals are destined to a death sanctioned by public policy. And is that a policy or healthcare system worth having?
NICE logic becomes a convenient administrative approach to controlling access to therapies, and by ignoring the rule of rescue neatly hands administrators a bureaucratic way to avoid moral accountability.
The moral dilemma that the economists at NICE are trying to reduce to an equation is whether a new therapy is extending life, or delaying death; we aren’t ‘smart’ enough yet to know this. The Oregon approach collapsed when the hard choices emerged and people were unable to resolve this dilemma, which is not a quantitative issue, but one of how we value our humanity.
Kierkegaard’s Concluding Unscientific Postscript speaks of the leap to faith as involving self-reflection and the emergence of scepticism. It is worrisome that NICE is so confident.
Cookson R, McCabe C, Tsuchiya A. Public healthcare resource allocation and the Rule of Rescue. J Med Ethics. 2008 Jan 7;34(7):540–4.