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Measuring Up: the health of NHS Cancer Services is a report from Cancer Research UK.

I have no difficulty accepting much of what they have discovered and the report’s key points are sensible. But, two main conclusions are unsurprising and disappointing: more money

English: A male Freckled Duck (Stictonetta nae...

Paradigm Shift: If it sounds like a duck, it’s a duck. English: A male Freckled Duck (Stictonetta naevosa) (Photo credit: Wikipedia)

and better leadership.

There will never be enough money, so we need to think differently about how we organise care itself. More leadership is a typical lament which says that the people responsible for the service haven’t done what they need to do. When I read reports such as this that call for more leadership I can only shake my head that they were not able to think further about the underlying causal landscape.

Their use of tipping point language is useful, though, as it does suggest catastrophic, rather than incremental, changes are likely. A tipping point means a move from one state to another (like tipping over the milk pitcher), where other factors come into play (otherwise it wouldn’t be tipping!). That suggests that there will be a change of state in which the old rules are unlikely to apply or be useful. After Kuhn, we call this a paradigm shift. Edward de Bono characterises two situations: one he called a problem, where you use existing rules; the other is a crisis for which you need new rules. My take is that the NHS is moving into territory where the need for different thinking is more important than problem-solving. That healthcare is a complex (wicked) and adaptive system should alert us and not surprise us that solutions create new problems and indeed crises.

Based on the report, though, we’re more likely to see hyperactive civil servants and NHS “leaders” rushing about with Powerpoint presentations full of exhortations and flow charts, accountability matrices and maps. We’ve tried that so often, one wonders if there are any other tools in the box. However, that the current state of affairs may have been caused by past reform and changes is an important insight, but to argue for essentially what is more of the same is plain silly. If past actions have destabilised cancer services and tipping is likely, then new thinking and new rules are needed. Did I miss something in the report?

If we take the simple flow of patients through the system, we are told the rate of entry is rising as GPs shift to ‘urgent’ referral, presumably the only way they know to get an oncologist’s attention, but the velocity through the system hasn’t changed. Why should that be surprising when resources are rigid and constrained by NHS structures (such as lack of effective transfer of patient information), and what appears to be performance measurement of the wrong things, creating perverse incentives.

The diagnostic phase is what appears to be rate-limiting across the patient and treatment pathway and hence is the primary blockage. While increased investment in diagnostics would be timely, how to do that is where a paradigm shift is needed. The delay in procuring proton beam equipment (so much in the news) illustrates the procurement logic that undermines service delivery. Entrepreneurial creation of free-standing diagnostic centres, providing on-demand services to oncologists and patients would be one way to deal with this. Does the NHS need to own the equipment, labs etc. or does it just need access to the service? By-passing the GP would also be another option, as the gatekeeping function appears to be another form of avoidable delay (ask women how long it took for ovarian cancer, for instance). Would it not be better for patients to access directly oncology diagnostic centres, which might also speed GP referral in turn?

The policy-down focus on leadership has clearly produced organisations of dubious purpose, but with evocative titles: Clinical Senate. Wow! But systems are judged by their performance, not what they’re called. A focus on leadership shifts cognitive priorities from a service orientation to one of lining up organisational structures, job descriptions, role definitions and mandates, meetings, minutes, but distractions if the challenge is where the rubber meets the road. The intersection of patient with system defines the leadership challenge, not the other way round.

So, what is to be done? I don’t buy the authors’ argument that change-weary people don’t need more change. They may embrace the logic of wholesale paradigm change if it got rid of the nonsense that stops them from doing what needs to be done. My take is that there is a strong case to be made for unbundling cancer services (this logic can apply in other clinical service areas, too) defined by the demands of the patient pathway. I would also look for ways to encourage entrepreneurial solutions, particularly in the form of investment in diagnostic technologies, and in enabling oncologists to work autonomously with each other and with patients. This would call time on the hospitals’ monopoly control of oncologists, cancer diagnosis, testing, and services, which is organisationally rate-limiting, and many of the identified problems are consequences of a system subjected to serious rate-limiting blockers, but lacking the ability to alter its structure to bypass, elminate, or reform those blockers.

In the end, the report is a narrative exhortation to get people to meet and plan to do what they are currently not able to do, or otherwise they would have done what needed to be done. Why not?

 

 

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Conceptual work by Yves Klein at Rue Gentil-Be...

When rules don’t work [Conceptual work by Yves Klein at Rue Gentil-Bernard, Fontenay-aux-Roses, October 1960, photo by Harry Shunk. Le Saut dans le Vide (Leap into the Void) (Photo credit: Wikipedia)]

 

 

 

 

 

 

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 only if NICE’s logic is compelling.

 

The problem for Sir Andrew, and likemined 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 just such an approach. 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.

 

You see, 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. 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 NHS is that it does not allow such people to rescue themselves because it prohibits any sort of co-funding or other arrangements. The only option is an opt-out (and private medical insurance has rules about pre-existing conditions). Given the funding priorities of the NHS, 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 ways to introduce practical co-funding.

 

Since individuals have no other options in the NHS, the rule of rescue as a moral imperative will be violated and we will act, not out of analytical error (i.e. make a technical mistake), but unethically. You see, the NHS 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?

 

We have seen a similar challenge to NHS/NICE logic recently with the King family and proton beam therapy, and the NHS will also use NICE logic to determine access. Whether beams or drugs, it is the same argument.

 

But why cancer? The main public policy question is why should cancer patients be given preferential treatment as against any other deserving group? This may in part be driven by the often astronomical costs of new cancer therapies themselves, which demarcate cancer patients decisively from equally deserving patients with less cost-contentious therapies. I have just finished some work on motor neuron disease, for which there is one specific medicine and life expectancy from diagnosis is 3 to 5 years, with median survival rates that are measured in months. NICE reportedly is developing guidelines for this disease. Costs are considerable, and at least in the UK, highlight the bureaucratic illogic of separate healthcare and social care, but that is another story.

 

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. 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.

Further reading

 

Cookson R, McCabe C, Tsuchiya A. Public healthcare resource allocation and the Rule of Rescue. J Med Ethics. 2008 Jan 7 [cited 2014 Sep 4];34(7):540–4.
Jonsen, AR 1986, Bentham in a box: technology assessment and health care allocation, Law, Medicine and Health Care, Vol 14, pp172–4.
Richardson J, McKie J. The rule of rescue, working paper 112, Centre for Health Program Evaluation, Monash University