Inch-wide mile-deep radiology

The weary joke about sub-specialisation in medicine goes that a team providing cutting edge care for big toe pathology fears obsolescence in the face of increasing big toe technical and academic advancement and eventually splits. Team hallux sinister and team hallux dexter are born.

Like all worn-out jokes, there is an underlying kernel of truth. Healthcare has become more complex. Diagnostic and management pathways have become intricate with multiple decision nodes sometimes requiring high stakes choices at pace. All this requires staff intimately conversant with the details of the pathways they provide and able to triage to other teams when they recognise a patient falling out of their expertise area: it requires sub-specialisation. Sub-specialisation has undoubtedly resulted in improvements in the care of patients in much of medicine. If you had an MI in the 1960’s you’d be put on a ward to see if you got better and maybe prescribed some calisthenics if you did. You were lucky if you got aspirin. Now with sub-specialty teams providing 24/7 percutaneous coronary intervention, secondary prevention, risk stratification, cardiac rehabilitation, delayed elective revascularization and so on, survival and morbidity following an MI are unrecognisable from the 60’s and continue to improve further.

The joke though is that the endpoint of sub-specialisation is absurdity, that there is a risk of disappearing down a technical and professional rabbit hole so deep and long that you, or your team, like teams hallux sinister and dexter become an irrelevance. But it’s not necessary to reduce to the absurd to highlight a number of risks with sub-specialisation that temper its undoubted benefits.

The first risk, and the most obvious, is that patients don’t come readily parcelled in handy chunks of pathology that fit neatly into clinical pathways. They are complicated. The 80 year old with a 6.3cm AAA may also have prostate cancer, COPD, a wife with early dementia and family that, while caring and concerned, live too far away to offer any robust practical support. We can all recall patients whose lives become dominated by increasingly frequent visits to hospital, meeting fractured and disparate healthcare teams. How do we prevent their experience of care becoming confusing and burdensome? Who is going to help them make a holistic decision about what their therapeutic priorities are when each sub-specialty team is only familiar with a little bit of their lived experience? As the population ages, complex multi-morbidity is commonplace and patient-centred practice becomes increasingly important. This requires generalists, or the active maintenance of a generalist overview. Or perhaps paradoxically, specialist generalists like POPS teams.

A second risk is that it can lead to over treatment. In the context of the joke, the teams hallux justify their setup and ongoing existence by the need to undertake increasingly complicated interventions on big toes. Need is a slippery word here (see ‘What do we mean by need?’). Is the need driven by a population health deficit which can be cost-effectively corrected, or by a professional interest in a particular niche pathology? Economists call this supplier induced demand. In layman’s terms, if you are a carpenter with a hammer, everything looks like a nail.

Finally, increasing sub-specialisation can lead to loss of workforce cohesion and siloed – rather than systems – thinking. When colleagues have little in common, they communicate and collaborate less and can even start to perceive each other as threats. Opportunities for informal interactions are lost, relationships deteriorate and solidarity withers. This can be exacerbated by specialty teams working in geographically isolated locations. But there remain many shared challenges in the provision of healthcare that are common whatever the sub-specialist interest and which require team-working and cooperation to solve. These challenges vary in scope and complexity from the contribution by sub-specialty teams to out-of-hours or emergency general services to much wider policy or philosophical problems such as population level health interventions, social justice in health, inclusion and equity in healthcare provision or the sustainability and environmental impact of services. In my own sub-specialty of interventional radiology, conversations about these wider aspects of what we do are very much in their infancy.

In radiology, sub-specialisation is inevitable and necessary. I can perform a TACE but I’m not very good at reporting the liver MRI on which the liver lesion was diagnosed. I think the converse applies. Modern imaging is so complex, so rapidly evolving and so central to modern healthcare that sub-specialisation within radiology is a representative microcosm of specialisation within medicine in general.

But as in medicine in general, sub-specialisation in radiology creates difficulties. Even in a large department, comprehensive cover for acute radiology, especially out-of-hours, can be complex to organise if colleagues no longer feel competent to report imaging outside their immediate area of expertise. Cover becomes a complex tessellation of overlapping subspecialty skills, supported by byzantine risk-assessed protocols for who reports what and when, creating confusion for referring clinicians and trainees alike. Or it is outsourced to an external provider willing to provide non-specialist radiology for a fee.

Sub-specialisation can also mean that some services, modalities or examinations get left behind, lost in the gaps between multiple areas of individual expertise. Plain film radiology and general ultrasound spring to mind. Finally operational pressure in one sub-specialist area (for example a particularly large backlog due to planned or unplanned leave or a scanning initiative) is difficult to mitigate if the excess workload cannot be shared more widely.

One of the roles of radiology leadership is to manage these challenges, to steer a department between the competing risks and benefits of sub-specialism vs generalism and of individual aspiration vs operational necessity. The key to this is the nurturing of teamwork and communication. Sub-specialisation within teams is something we are familiar with in all aspects of life: in sport think of the seamless drafting of a cycle team or the elegance and grace of a football team at the top of their game; in commerce think of the thousands of people with different skillsets it took to design, produce, deliver and maintain the device you are reading this on; in family think of your role: parent, lover, cook, taxi driver, breadwinner, emotional anchor, comedian or straight man? Sub-specialist cooperation is ubiquitous.

Part of the key to a successful radiology team (any team) is not that everyone does the same thing or is treated the same way. It’s the creation of a culture of professional respect, equity and understanding within which individuals or groups can enjoy and deliver their sub-specialty interests (with all the clinical and operational benefit this brings) without risking the downsides of this specialisation. A radiology team with a strong sense of overarching collaborative endeavour and collective ownership will automatically mitigate the risks of sub-specialisation, of siloed thinking, of isolationism or protectionism. It will identify the gaps and manage them.

But a strong team culture is not only built or modelled by its leadership. The members of the team also need to be willing to be players for it, to sacrifice some (not all) of their personal desire for the sake of the collective. So it’s OK to have you aspirations in the clouds, to be an expert left-big-toe radiologist, to have an inch-wide mile-deep practice some of the time. But you also need to keep yourself grounded in the general, in the shared. You may find that this can be just as fascinating, just as fulfilling. The broadening of perspective it affords as you leave your rabbit hole, see the sky and breathe the fresh air of new opportunity can be invigorating! I know: I’ve done it.

So be partially pluripotent. Don’t fall into the trap of sub-specialising yourself into irrelevance. Avoid this mainly for your own sake, but also for the benefit of your colleagues, your department and the community it serves and your profession.

Excellence, or is good-enough radiology good-enough?

Some questions:

You have a new MRI scanner that can provide lots of additional sequences that increase diagnostic sensitivity slightly but also increase scan time by 25%. Do you implement them?

A trial identifies that a new cancer surveillance protocol improves recurrence detection rates but involves twice as much imaging as the previous protocol. Do you agree to its introduction?

You review non-urgent overnight inpatient imaging and find that next-morning reporting rarely (but not never) results in harm. How much expensive overnight resource do you allocate to manage this risk?

The RCR Quality Standard for Imaging provides a starting point in setting out a comprehensive quality baseline for a radiology department with detailed descriptors across many domains. It describes a service fulfilling the imaging need of the population it serves quickly, safely, effectively, collaboratively and with dignity. A excellent imaging service should (arguably) also provide its workforce with a career structure that allows them to personally and professionally flourish with interesting and stimulating work and the opportunity to innovate or spread the innovations of others.

Does an excellent service require decisions such as the ones I’ve outlined above? Could it deliver more out-of-hours reporting without impact on daytime capacity? Would it have the redundancy to increase scan times for some imaging by 25% and the funding to cope with twice as much imaging as the previous protocol? Or would a service implementing such change without challenge be an un-fundable and undesirable fairytale lacking understanding of the wider societal context of resource allocation?

Where do we draw the line at good-enough? Does it matter if a particular decision might expose a small number of patients to harm if it will mitigate other operational risks? Is the potential stifling of innovation (for example by not funding new devices or drugs, preventing the use of new imaging sequences) reasonable if money is productively diverted elsewhere? Does a culture that accepts good-enough inevitably eventually lead to degeneration into a rump or failing service? What do our patients and their relatives think? What compromises are they willing to make or willing to allow us to make on their behalf?

I doubt many go into healthcare to offer a good-enough service. There is no inspiring vision in the average nor stirring narrative in the adequate. Healthcare is seen as urgent, heroic, saintly, uncompromising: ’Going the extra mile’, ‘Doing the right thing’, ‘Pulling out all the stops’. If we place limits on healthcare professionals’ autonomy to manage patients and services as they think appropriate, does that reduce them to highly-skilled pieceworkers, moving from one patient to the next, constrained by the mandates of a system they have limited power to alter. What does that do for professional satisfaction, identity and social role?

And yet much of healthcare is repetitive and mundane piecework. In radiology it’s the backlog of thousands of routine scans, the GP reporting basket, the waiting list for an image guided biopsy or a fistulaplasty. This work is not sexy or cutting edge but that does not mean it’s not fundamental to what we do and who we are. And of course, each of these mundane events is a source of considerable anxiety, and may even be life changing, for the patient involved.

Lots of questions. Paragraphs of them. To reach an answer needs an exploration of ethics and morality, an understanding of organisational psychology and a wider conversation about what we consider important. Philosophers have wrangled with these big questions for centuries without definitive conclusion. Yet decisions, like the three examples at the top of this blogpost, need to be made and need to be made now. They will not wait for a psycho-sociocultural analysis of how modern society approaches moral philosophy or even for a cost utility analyses. How then do we make them?

The answer, I think, is to recognise that while the questions (and many others in healthcare) seem simple, almost binary (implement or not), in fact they are wicked. A wicked question has a number of characteristics including the lack of a clear definition, the involvement of many stakeholders (with different priorities, ethics and worldviews) and the lack of clear criteria for determining whether the answer arrived at was ‘correct’. For example, implementing the new surveillance program described above might be enthusiastically welcomed by patients with the particular cancer involved, but not by others who see resource diverted. It might we embraced by clinicians excited by the opportunity to improve their service, or resented for the increased workload. A review describing the number of additional recurrent cancers identified and the number of additional scans undertaken might equally be interpreted as identifying a great step forward in care or a colossal waste of money.

Management of wicked problems can be undertaken in a variety of ways from the imposition of a solution by those who wield power (and who may- or may not- own the consequences of their decision) to broad collaboration and iterating to an outcome where the driver is agreement on a solution rather than the solution itself. We might want to implement the new cancer follow up protocol, or we might not, but all stakeholders should feel able to contribute to the decision and at least be satisfied that their voice has been heard and understood, even if the ultimate decision made was not one they favoured.

So where does this leave excellence in radiology?

It means that excellence is not fixed, it’s constantly moving, changing and adapting. It requires ongoing conversations: with the people who deliver, pay for and organise the service; with the people who use it; and crucially with the people who experience it – our patients. It means exploring what we can offer and then delivering it well. There may be agreed metrics or standards and these may change over time – but these metrics need to be meaningful for everyone, else they will be resented or ignored. Excellence, however, does not mean we need to do or offer everything. What we choose to do is up to us to decide. Good-enough can be, and often is, excellent.

This collaboration and shared purpose is the protection against the professional disenfranchisement associated with the mundane. Feeling part of a bigger whole, of a movement, drives engagement and job satisfaction, as the (well rehearsed and possibly apocryphal) story about President Kennedy and a cleaner at NASA illustrates. The RCR QSI document sets exacting standards for good-enough which protect against mediocrity. Collaboration in their implementation and beyond will drive services to be better, not worse.

Excellence is not an endpoint, it’s a process. It’s bigger than the individual decisions made about whether or not to do a particular thing. Decisions about increasing our sequences, adopting a new surveillance strategy, resourcing overnight reporting and a myriad of others require us to work together.

Working together for a common goal. That’s excellence in radiology.

NHS workforce and the reality distortion field.

The process of designing the first Apple Macintosh computer in the early 1980s was an arduous one. The exacting demands of Apple co-founder Steve Jobs resulted in his employees and colleagues describing a ‘reality distortion field’ around him and the people who came into his orbit, within which the impossible became possible. Rectangles with rounded corners when the processor couldn’t draw a circle? No problem. A device with a footprint smaller than a phone book when everything else was three times this size? OK. Shave half a minute off an already streamlined boot process? Yeah, we can do that.

Jobs was able to bridge the gulf between expectation and reality by the clarity of his idea assisted by the sheer force of his personality, his drive, his obsession and a large dose of behaviour one might describe as bullying.

In today’s NHS we see a huge gulf between expectation and reality. Amongst other laudable aspirations NHS England [NHSE] expects to eliminate elective waits of over 65 weeks by March 2024 and increase diagnostic activity to 120% of pre-pandemic levels by April 2023. There will be improved cancer waiting times and outcomes, delivery of 50 million more GP appointments, upgraded maternity services and more, all delivered within a balanced budget.

And yet as I write, emergency departments are full to overflowing and secondary care is snarled up as social care cannot take discharges. High cost resources like theatres stand idle as hospitals grind to a halt. Primary care is drowning in demand. Much infrastructure is ageing. Estate is frequently tired, cramped and unfit for purpose. In this context, a reality distortion field with the metaphorical power of a black hole is required to make NHSE’s objectives seem even remotely achievable.

There are things that can be done: waste can be reduced and unnecessary bureaucracy eliminated; skill mix can be improved and workforce better deployed; estate can be upgraded flexibly to allow for new ways of working; services can be made more responsive to the needs of the people the NHS serves. Perhaps demand or public and political expectation can be managed. Maybe artificial intelligence or other technocratic solutions can finally deliver on their promise. We can refresh our NHS and make it comparable again with the best of our neighbouring nations.

To achieve all this requires money. This is necessary but insufficient. It also requires people.

Without a motivated, engaged, enthusiastic, driven workforce, recovering from the current crisis will be impossible. It’s the staff of the NHS and social care sector who identify the blockages and inefficiencies and create the solutions needed to improve at all levels: from district nursing team to quaternary hospital service, from clinic to Integrated Care Board. This is not a new concept: Kaizen methodology with continuous improvement driven by all staff is well established in business and healthcare. It is the staff who deliver.

Jobs recognised the importance of people in delivering his vision. He surrounded himself with people he described as his ‘A’ team. They achieved what they did because while he was a martinet character, difficult to work with, prone to bouts of anger, rudeness and extreme condescension he was also inspiring, he imbued loyalty and belief. People wanted to work for him, to deliver for him.

Given the strong vocational ethos in the NHS workforce, it should be easy to motivate its staff. But instead I perceive a disillusionment and learned helplessness that I have never known before. This is corrosive to initiative and problem solving. Motivating the workforce means paying people appropriately, recognising that pay and compensation have a salient effect on morale and on the recruitment of new colleagues and the retention of old ones. It means publishing a long overdue workforce strategy. It means listening, and understanding the daily frustrations that erode professionalism and vocational drive. It means appreciating that working in ageing buildings with ageing equipment will inevitably breed apathy. It means transformative investment.

But more than this the NHS needs a transformative vision, akin to that seen at its inception. This means having the bravery and honesty to start a public discourse on how to fund the NHS and social care long term: what we can (or choose to) afford as a country and what we cannot (or choose not to). It means confronting difficult policy decisions about cost-effectiveness and service rationing with public, professionals and industry. It means addressing both demand for- and supply of- healthcare. Everyone I know in the NHS recognises the fact that we cannot go on as we are spending more and more on increasingly marginal outcomes.

And this is where the reality distortion field can help: because with the development of a transformative vision and a clear commitment to transformative investment I believe the NHS’s staff will deliver the solutions required. It has happened before and can happen again. Even before the money flows, the idea that the government understands and is committed to action will empower the workforce. It will allow the distortion field to develop and the gulf between expectation and reality to be bridged. But until the vision is developed and the investment begins there will be no reality distortion in the NHS. Just a grim reality.

Where might the vision come from? It’s clear not from our current government who seem to only have a wish-list of near-future outcomes expedient to help with their prospects at the next general election. To me, the only option seems to be a long term collaborative effort across successive Parliaments and political ideologies and involving all public, private, patient and professional stakeholders to co-create it. Whether there is the political will, executive structure or inspiring leader to facilitate this remains to be seen. Steve Barclay is not Steve Jobs.

Values, guidance, NICE and the ESVS.

This is a transcript of a 7 minute talk I was invited to give at the Cardiovascular and Interventional Society of Europe’s [CIRSE] annual conference in Barcelona, as part of a session on “Controversies in Standard Endovascular Aneurysm Repair [EVAR] within IFU” [indications for use].

This talk: “NICE guidelines best inform clinical practice”, was one side of a debate: my opponent’s title was “European Vascular Society [ESVS] guidelines should be the standard of care”.

If you have on-demand access to CIRSE2022 content, you can view a recording of the session here.

Barcelona. Spain. 13^th September 2022. 15:00h

Thanks. My name is Chris Hammond, and I’m Clinical Director for radiology in Leeds. I was on the NICE AAA guideline development committee from 2015-2019.

I have no declarations, financial or otherwise. We’ll come onto that in a bit more detail later.

This talk is not going to be about data. I hope we are all familiar with the published evidence about AAA repair. No. This talk is about values. Specifically, the values that NICE brings to bear in its analysis and processes to create recommendations and why these values mean NICE guidelines best inform clinical practice. What are those values?

Rigour, diversity, context.

Let’s unpick those a little.

NICE’s is known for academic rigour. Before any development happens, the questions that need answering are clearly and precisely identified in a scoping exercise. A PICO question is created, the outcomes of interest defined, and the types of evidence we are prepared to accept are stipulated in advance.

The scope and research questions are then published and sent out for consultation – another vital step.

After the technical teams have done their work, their results are referred explicitly back to the scope. Conclusions and recommendations unrelated to the scope are not allowed.

This process is transparent and documented and it means committee members cannot change their mind on the importance of a subject if they do not like the evidence eventually produced.

It’s impossible to tell from the ESVS document what their guideline development process was. A few paragraphs at the beginning of the document are all we get. ESVS do not publish their scope, research questions, search strategies or results. How can we be assured therefore that their conclusions are not biased by hindsight, reinterpreting or de-emphasizing outcomes that are not expedient?

We can’t.

For example, data on cost effectiveness and outcomes for people unsuitable for open repair are inconvenient for EVAR enthusiasts. I’ll let you decide the extent to which these data are highlighted in the ESVS document.

More, in failing to define the acceptable levels of evidence for specific questions ESVS ends up making recommendations based on weak data. Recommendations are made based on the European Society of Cardiology criteria which conflate evidence and opinion. Which is it? Evidence or opinion?

Opinions may be widely held and still be wrong. The sun does not orbit the earth. An opinion formulated into a guideline gives the opinion illegitimate validity.

Finally, there is the rigour in dealing with potential conflicts of interest. These are the ESVS committee declarations – which I had to ask for. The NICE declarations are in the public domain on the NICE website. Financial conflicts of interest are not unexpected though one might argue that the extensive and financially substantial relationships with industry of some of the ESVS guideline authorship do raise an eyebrow.

The question though is what to do about them. NICE has a written policy on how to deal with a conflict, including exclusion of an individual from part of the guidance development where a conflict may be substantial. This occurred during NICE’s guideline development.

The ESVS has no such policy. I know because I have asked to see it. Which makes one wonder: why collect the declarations in the first place.

How can we then be assured these conflicts of interest did not influence guideline development, consciously or subconsciously.

We can’t

What about diversity?

This is the author list of the ESVS guideline. All 15 of the authors, all 13 of the document reviewers and all 10 of the guideline committee are medically qualified vascular specialists. They are likely to all have had similar training, attended similar conferences and educational events and have broadly similar perspectives. It’s a monoculture.

Where are the patients in this? The ESVS asked for patient review of the plain English summaries it wrote to support its document, but patients were not involved in the development of scoping criteria, outcomes of importance or in the drafting of the guideline itself.

Where is the diversity of clinical opinion? Where are the care of the elderly specialists to provide a holistic view? Where is anaesthesia? Primary care? Nursing?

Where is the representation of the people who pay for vascular services: infrastructure, salaries, devices? And who indirectly pay for all this, maybe for your meal out last night, for the cappuccino you’ve just drunk? Where is their perspective when they also have to fund the panoply of modern healthcare?

NICE committees have representation of all these groups, and their input into the development of the AAA guidance was pivotal. The NICE guidance was very controversial, but the consistency of arguments advanced by diverse committee members with no professional vested interest was persuasive.

Finally, we come to context.

An understanding of the ethical and social context underpinning a guideline is essential.

We cannot divorce the treatments we offer from the societal context in which we operate. We live in a society which emphasises individual freedom and choice and are comfortable with some people having more choices than others, usually based on wealth. Does this apply equally in healthcare? In aneurysm care? What if offering expensive choices for aneurysm repair means we don’t spend money on social care, nursing homes, cataracts or claudicants.

To what extent should guidelines interfere with the doctor-patient relationship? Limit it or the choices on offer? What is the cost of clinical freedom and who bears it?

NICE makes very clear the social context in which it makes its recommendations. It takes a society-wide perspective, and its social values and principles are explicit. You can find them on the NICE website. Even if you don’t agree with its philosophical approach, you know what it is.

We don’t know any of this for the ESVS guideline. We don’t know how ESVS values choice over cost, the individual over the collective. Healthcare over health. This means that the ESVS guideline ends up being a technical document, written by technicians for technicians, devoid of context and wider social relevance.

The ESVS guideline is not an independent dispassionate analysis, and it never could be, because its development within an organisation so financially reliant on funding from the medical devices industry was not openly and transparently underpinned by NICE’s values of rigour, diversity and context.

Rigour. Diversity. Context

That’s why NICE guidelines best inform clinical practice.

Thanks for your attention.

Moral hazard in a failing service

I go to see a woman on the ward to tell her that, again, her procedure is cancelled. I see, written in the resigned expression on her face, the effort and emotional energy it has taken to get herself here: arrangements she made about the care of her household, relatives providing transport from her home over 70 miles away and now unexpectedly called to pick her up. A day waiting, the anxiety building as a 9am appointment became 10, then lunchtime, then afternoon. The tedious arrangements to be necessarily repeated: COVID swabs, blood tests, anticoagulation bridging. All wasted.

She smiles at me as I apologise. She is kind, rather than angry, understanding rather than belligerent. And yet she has every right to be furious. This is, after all, the second time this has happened. And she knows as well as I do that my attempts at assurance that we will prioritise her bed for the next appointment she is offered are as empty and meaningless as they were last time she heard them.

Such stories are the everyday reality for patients and clinicians within the NHS, repeated thousands of times a day across the country, each one a small quantum of misery. At least my patient got an appointment. Some don’t. Ask anyone with a condition that is not life threatening or somehow subject to media scrutiny or an arbitrary governmental target about their access to planned hospital care and you will likely get a snort of derision or a sob of hopelessness. Benign gynaecological conditions (for example) can be debilitating but frequently slip to the bottom of the priority list, suffered in private silence, without advocates able to leverage the rhetorical and emotional weight of a cancer diagnosis.

This is not all COVID related. Yes, COVID has made things worse but really all the pandemic has done is cruelly reveal the structural inadequacies that we have been working around in the NHS for years and years. ‘Winter pressures’ have reliably and predictably closed planned care services even if it took until winter 2017 for the NHS to officially recognise this and cancel all elective surgery for weeks. Estate is often old and not fit for purpose. Departmental and ward geography does not allow for the patient separation and flow demanded by modern healthcare. Staffing rotas are stretched to the limit with no redundancy for absence. Old infrastructure and equipment requires inefficient workarounds. Increasing effort goes into Byzantine plans for ‘service continuity’ to deal with operational risks, while the fundamentals remain unaddressed.

Efficiency requires investment. You cannot move from a production line using humans to one using robots without investing in the robots to do the work and the skilled people to run them. You cannot move from an inpatient to an outpatient model of care for a condition without investing in the infrastructure and people to oversee that pathway. You cannot manage planned and unplanned care via a single resource without adversely affecting the efficiency of both. You cannot expect a hugely expensive operating theatre or interventional radiology suite to function productively if the personnel tasked with running it spend a significant proportion of their day juggling cases and staff in an (often vain) attempt to get at least a few patients ready and through the department. Modern healthcare requires many systems to function optimally (or at least adequately) before anything can be done. Expensive resources frequently lie idle when a failure in one process results in the entire patient pathway collapsing.

The moral hazard encountered by people working in this creaking system is huge. How can we feel proud of the service we offer when failure is a daily occurrence? When we, the patient facing front-of-house, are routinely embarrassed by – or apologetic for – the system which we represent. We can retreat into the daily small victories: a patient treated well, with compassion, leaving satisfied; an emergency expertly, efficiently and speedily dealt with; teamwork. But these small victories seem to be less and less consoling as the failures mount. Eventually staff (people after all) lose belief, drive and motivation. Disillusionment breeds diffidence, apathy and disengagement. The service, reliant on motivated and culturally engaged teams, becomes less safe, less caring, less personal and even more inefficient as staff are no longer inclined to work occasionally over and above their job planned activity. A bureaucracy of resource management develops and teams become splintered. Process replaces culture and a credentialed skill-mix replaces trusted professional relationships.

The moral hazard is compounded by the seemingly wilful blindness of our political masters, the holders of the purse strings, to comprehend the size of the problem. Absent any real prospect of improvement, we learn to accept the status-quo, the cancellations, the delay, the waiting lists. And our patients accept this too: how else does one explain their weary stoicism. Meanwhile our leaders cajole us to be more efficient, to embrace new ways of working, to do a lot more with a bit more money. It remains politically expedient to disguise a few percent increase in healthcare revenue spending as ‘record investment’ but I argue that most people working at all levels in the NHS recognise the need for transformative generational investment on a level not seen since the inception of the service. Such investment requires money and money means taxation.

More than that, there needs to be the political bravery to open a considered debate about what we mean by healthcare, where our money is most efficiently targeted and what we, as a society can (or are willing to) afford in amongst other priorities for governmental spending. Shiny new hospitals providing state-of-the-art treatment may make good PR but are meaningless without functional well funded primary care. Investment in complex clinical technologies will not improve our nation’s health if the social determinants of this (poverty, smoking, diet, housing, education, joblessness, social exclusion) remain unaddressed. Such a discourse seems anathema to our current politics with its emphasis on the individual, on technocratic solutions and on the empty promise of being able to have everything we want at minimal personal, environmental or societal cost.

Until our leaders start this debate, and until we, as members of society, understand the arguments and elect politicians to enact its conclusions, ‘our NHS’ will continue to provide sometimes substandard and inefficient care in a service defined by its own introspection rather than by the needs of the community it should serve. Our healthcare metrics will continue to lag behind those of comparator nations. And I will continue to find myself, late in the afternoon, apologising to women and men for the inconvenience and anxiety as I speak to them about cancelling their procedure, hating myself for it but helpless to offer any solution or solace.

Decisions, QALYs and the value of a life

Here’s a well known thought experiment:

A runaway train is on course to collide with and kill five people who are stuck at a crossing down the track. There is a railway point and you can pull a lever to reroute the train to a siding track, bypassing the people stuck at the crossing but killing 2 siding workers.

What would you do? What is the ethical thing to do? Why? What if one of the siding workers was related to you? What if the people stuck at the crossing were convicted murderers on their way to prison? What if the people on the crossing were not killed but permanently maimed?

Have a think about it before reading on.

Unless you answered that you did not accept the situation at face value (like Captain Kirk and the Kobayashi Maru simulation), or refused to choose, you will have made some judgements about the relative value of the choices on offer and perhaps the relative value of the lives at risk. You are not alone in this: in a 2018 Nature paper, nearly 40 million people from 233 countries were prepared to make similar choices. On average there were preferences to save the young over the old, the many over the few and the lawful over the unlawful, though with some interesting regional and cultural variations.

Making value judgements about people in a thought experiment is one thing, but making them in the real world with impacts on real people and their lives is another. Ascribing value to a persons life has grim historical and moral connotations. If someone is deemed somehow less valuable than someone else there is a risk that this is used to justify stigmatisation, discrimination, persecution and even genocide. We therefore need to be extremely careful about the moral context in which such judgements are made and the language we use to discuss them. Human rights, justice and the fundamental equivalence of the life and interests of different people must be central.

Decisions which affect the health, livelihoods and welfare of citizens are (and need to be) made all the time. In some cases decisions affect length or quality of life, or liberty. Decision making during the pandemic (whether locking down, opening up, isolation, mask wearing or travel restriction) is a potent recent example. Few people would argue that no decisions were necessary even if they may disagree with the details of some (or all) of the actual decisions made.

But if everyone’s life and interests are equivalent, how do we avoid becoming paralysed when faced with choices which inevitably will have (sometimes significant) consequences for different individuals? We do this by understanding that the values we ascribe to the people affected by a decision are not absolute measures of their worth, but merely tokens which allow us to undertake some accounting. If the process by which we allocate these tokens is transparent, just and humane then their use to inform a decision is morally defensible. Choosing to switch the points because this results in the least worst outcome on average is morally very different from choosing to switch them because you have a seething hatred of railway engineers.

What tokens can we use in healthcare to help us make decisions?

There have been attempts to provide a quantitative framework for measuring health. The most commonly recognised token of health is the Quality Adjusted Life Year (QALY) though there are others (eg. Disability Adjusted Life Years [DALY]). One QALY is a year lived in full health. A year lived in in less than full health results in less than one QALY, as does less than one year lived in full health. How much we scale a QALY for less than full health is determined by studies asking members of the public to imagine themselves ill or disabled and then enquiring (for example) how much length of life they’d trade to be restored to full health (time trade-off) or what risk of death they’d accept for a hazardous cure (standard gamble).

The QALY is a crude and clumsy tool. It has been criticised for relying on functional descriptions of health states (like pain, mobility and self care) rather than manifestations of human thriving (stability, attachment, autonomy, enjoyment), for systematically biasing against the elderly or the disabled and for failing to take into account that health gains to the already healthy may be valued less than health gains to the already unhealthy (prospect theory). The scalar quantities contributing to a QALY (‘utilities’) reflect the perceptions of those surveyed during QALY development, validation and revalidation. These perceptions may be clouded by fear or ignorance and may have little relation to the real experiences of people living with a health impairment or handicap. Some have argued that QALYs have poor internal validity and are therefore a spurious measure.

These are important, though arguable, technical criticisms and to some extent explain the marked international variation in the use of the QALY: they are used in the UK and some Commonwealth countries, but have been rejected as a basis for health technology assessment in the US and Germany. And yet, decisions need to be made. If not QALYs then what else?

But the most emotionally charged criticism of QALYs is that they somehow inherently rank people’s value according to how healthy they are or that the health of people who gain fewer QALYs from an intervention is somehow worth less than the health of those who gain more. This is a misunderstanding. QALYs (like the assessments you made of the lives at risk from the runaway train) are accounting tokens. When fairly, justly and transparently allocated (and technical criticisms might be important here) they merely allow a quantitative assessment of outcome. The rationale underlying QALY assessment is explicit that the value of a QALY is the same no matter who it accrues to: there is no moral component in the calculation. And nor is there the requirement that efficiency of QALY allocation be the sole (or even most important) driver of decision making.

A QALY calculation is fundamentally contingent on the interaction of the intervention with the people being intervened on. Someone’s capacity to benefit (which is what QALYs measure) depends not just on their characteristics but also those of the intervention. Absolute ranking of QALYs as an empirical assessment of someone’s ‘value’ based on their health is therefore meaningless: a different intervention on the same set of people can result in a totally different estimate of outcome.

Consider if rather than five people on the crossing there was only one (and still two siding workers). A pure utilitarian consequentialist would switch from ploughing the train into the siding to smashing it into the crossing. But this doesn’t mean she has suddenly changed her mind about the value of the lives of the people involved, merely that the situation and therefore the most efficient outcome, has changed.

QALYs don’t ascribe a value to someone’s life. They are accounting tokens, providing a (perhaps flawed) quantitative estimate of health outcome in a specific circumstance – usually that of evaluation of an intervention relative to an alternative in an identifiable group of people. This is not to say that some people might not be harmed by a decision based on a QALY assessment, but that, of itself, does not make the decision unfair or unjust.

Alongside utilitarian efficiency and QALYs, egalitarian considerations of fairness and equity, distributional factors, affordability, and political priorities may (and often do) feed into the decisions that are ultimately made.

Consent and shared decisions

I go to consent a man for an angioplasty. He had a full length stenting of his SFA twelve months ago. This was difficult, required several attempts over a few days and multiple punctures into the artery at the groin, behind the knee and at the ankle. The procedure was done to treat an ulcer and this has slowly improved but is still not fully healed. He tells me that his prior procedures were dreadful: painful, long and frightening. He is clearly anxious about undergoing another one, and yet he is here, in recovery, ready to go through it all again.

He is here because a surveillance ultrasound has shown a stenosis in the stents. The protocol kicked in, an angioplasty was booked, preassessment happened, arrangements were made. We go through the consent together. He signs the form, we wheel him into the angio suite and off we go.

Thinking about my patient’s interaction with this small part of his healthcare, what strikes me is the degree to which the process disenfranchises him: his role seems passive in the face of an inevitable and gathering momentum that brings him into surveillance and from there to the angiography suite. Apart from the uncertainties involved (Does he need an angioplasty at all? What happens if nothing is done?), what opportunity has there been to explore his hopes and expectations for this treatment? Why have we called him here? What does he want? What do we want? Are those the same things? Even the language used (‘consenting’) creates a sense of passivity. It implies something done to the patient, not done with them.

Healthcare decision making is becoming increasingly complicated due to an ageing and co-morbid population, the management of imaging findings with an unknown natural history, and a wealth of competing technological treatment options with differing profiles of risk and benefit over time and for different patient cohorts. On top of this are the substantial uncertainties in the evidence about each of these. Confronted with these changes it seems essential that patients are given the space to consider their options and (perhaps more importantly) to reflect on their broader preferences and how they might weigh their treatment options in the context of these. Taking patients through this is delicate, time consuming and sometimes uncomfortable for everyone, especially if discussions broach the nature of risk or the inevitability of a finite lifespan.

GMC guidance on consent highlights information sharing but also emphasises the importance of a dialogue and (crucially) on finding out what matters to patients, their ‘…wishes and fears… …and their needs, values and priorities…’. The Montgomery Ruling has created legal precedent effectively requiring such a dialogue. Clinicians are notoriously poor at doing this and patient surveys often identify information gaps, misunderstandings and assumptions (by both patients and clinicians) about motivations and drivers for care. In retrospect, patients not infrequently regret their decisions.

Additionally, as treatment complexity increases, an individual’s healthcare becomes distributed across teams of specialist technicians, each with their own narrow area of expertise. Treatment pathways become protocolised and a patient’s relationship changes from being with an individual to being with an organisation. When a patient sees different professionals at every stage of their healthcare journey there is little opportunity for the development of the rapport and trust which gives them freedom to state their preferences and question the assumptions driving their management. Every individual interaction adds to the momentum toward a predetermined outcome that they might not want. Paradoxically, as the decision making complexity increases, the opportunity for dialogue exploring the decision making declines.

What might we do differently?

Decision support tools are being investigated to help patients navigate the complexities of high-risk surgical decision making. In the meantime, I am struck by a personal analogy about a complicated decision I recently had to make. Many of the conceptual issues when making an investment decision are similar to those made by patients about healthcare: the trade off of short- and long-term outcomes; the nature and magnitude of uncertainty in these; the reliance on an expert to interpret complicated data and communicate them in a meaningful way and the willingness to delegate some of the decision making.

But what was very different in my decision making was what my financial advisor and I did before we began to talk about particular investments. We spent a long time assessing my attitude to risk, my view on ethical or green investments, the timeframe over which the investment was required and the context of the investment within my other priorities. Only then did we move on to discuss potential investment vehicles. I ended up agreeing a recommendation: I’m not sure I fully understand the complete details. I certainly couldn’t quote the numbers. But I am sure I trust my advisor’s recommendation, knowing that he knows what my perspectives are.

There are similar (though limited) models in healthcare. The UK Resuscitation Council’s Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) and the US Physician Orders for Life Sustaining Treatments (POLST) processes encourage patients and clinicians to discuss personal priorities for care and options for management in the event of an emergency toward the end of life (frequently, though not exclusively, meaning CPR in the event of cardiac arrest or other ceilings of care such as transfer to ITU). Having these conversations is difficult, but their importance lies not only in the outcome, but also in the process itself which explicitly demonstrates that patients retain agency and that healthcare organisations recognise and value this.

Can we adopt similar models more broadly in consent? Perhaps. We need to develop practical techniques and questions which allow wider perspectives to be explored with patients. However the fundamental prerequisite is that we be curious about what our patients want and on their terms, not on ours. We need to offer them time, space and support to help them express these wants, and we need to listen, understand and heed them before we negotiate a decision.

A focus on consent as a technical exercise in the sharing of information is a narrow and meagre understanding. Ideally, consent is an exploration of the patient’s values and priorities, and then a contextualising of the treatment choices on offer in the light of these priorities. Unfortunately this is often logistically impossible.

My patient’s angioplasty was quick, technically successful and apparently pain free. I booked him back into surveillance. Is this what he wanted? I don’t know. I’m sorry to say, I didn’t ask.

Cost-effectiveness, art and science in medicine

I’m consulting with a man in his mid 70s: a retired teacher in an inner city secondary school. He used to smoke, but quit several years ago. He’s otherwise pretty fit: he has never learned to drive so walks everywhere and uses public transport. He is married, and his wife and he are still independent. They have grown up children who live a long way away. They go out to the theatre when they can and enjoy going to the local pub together and with friends. He’s got high blood pressure which is well controlled. He also has an abdominal aortic aneurysm (an AAA). It’s large. And he is worried about it. We talk about the options for repair. He is anxious about a major abdominal operation. He’s not dead set against it, but is concerned about the recovery, the impact it will have on his wife. On balance he is minded to have an endovascular repair, for which the AAA is anatomically suitable. We discuss the long term outcomes of open and endovascular repair. The need for secondary procedures and surveillance. He leaves the consultation undecided and plans to discuss it with his family.

I have spent the last 5 years on the NICE Guideline Development Committee, developing a guideline for the management of people with AAA. The results of several large trials comparing open and endovascular repair of AAA are consistent that while endovascular repair and open repair are safe (meaning very few people die from them), endovascular repair is safer by a small margin and gets people out of hospital and back to normal substantially more quickly than open surgery. However the longer term outcomes are not as good and beyond about 7 years, more people are dead after endovascular repair than after open repair. Because of this, endovascular repair is not cost effective, meaning the opportunity cost of providing it is too great and at a population level offering endovascular repair causes harm. Putting aside arguments about the contemporary relevance or methodological detail of the evidence, the only possible conclusion is that endovascular repair should not be undertaken if someone can have an open operation.

There are several problems with accepting this analysis. One is that it requires a belief that savings made in one place in the healthcare economy will be realised in a benefit elsewhere: something called Pareto efficiency. This might be an intellectual leap too far for some in the NHS of 2020. But perhaps the biggest issue that it is a cold joyless analysis – a faceless functional accounting, the reduction of individual encounters to marks on a Kaplan-Meier chart. It is the science in medicine, but medicine is more than science. It’s an art. For me some of the joy of practicing medicine is in this art: the ability to synthesise the evidence into a narrative a patient can engage with, helping them work out the best option. What do I do then, when having done this, my patient’s preferred option is not cost effective, when the art and the science collide? How do I decide between the interests of a real person sitting before me, vulnerable, perhaps anxious, who trusts me to make decisions with them, for them and in their best interests and the interests an unknown person (or group) with whom I have no relationship – the people who will theoretically benefit if I choose the science over the art. How do I decide between my patient and society?

Since the publication of the draft NICE guidance on AAA, which recommended against endovascular repair partly on the basis of cost effectiveness arguments, I have defended and explained the decisions the guideline committee made at conferences, in conversations and in print. I have posed questions to conference panellists who were challenging the guideline about whether they think cost effectiveness is an important consideration when deciding a therapy and received frequently unconvincing responses. But in the back of my mind, I’m questioning: are they right? Are the unseen consequences of my clinical decisions (for unknown people) my responsibility or are these too distant from me to consider.

Within the contexts by which NICE asks its committees to make decisions, the answer is clear: they are not too distant, and must be taken into account. But while it may be the right thing to do, to follow the science and deny treatments that are not cost effective, it can feel wrong. It’s a depressing analysis to frame the future for individual people in terms of population outcomes. Individual characteristics, ambitions, concerns and expectations, love, beauty and hope are subordinated to the inevitable logic of the data. This feels like a betrayal of the doctor-patient relationship which is ultimately a personal one: and guidelines are implemented at a personal level, patient by patient.

This is not a new dilemma, either in medicine or in economics in general. It is a version of ‘the tragedy of the commons’. To some extent patients, the public and physicians understand it, in the general acceptance of triage in emergency departments, or waiting lists for elective treatment. But the idea of not offering treatments at all, solely on the basis of a cost effectiveness calculation, seems to be too much for many people in their role as clinicians or patients, even if it makes sense in their role as taxpayers. In fact it is probably impossible (and certainly not desirable) for clinicians to make bedside judgements on the basis of cost effectiveness, not only because of how it makes them feel, but also because it would undermine the trust central to the relationship with their patient. Solutions to the dilemma attempt to constrain the options available to clinicians either by incentivising certain therapies, or by limiting choice to cost effective options only (by either not funding the alternatives or by creating guidelines). In order to allow these solutions, clinicians need to accept that some decisions are taken out of their hands. But in doing this, it can seem as if the art in their practice is reduced to a near irrelevance. Perhaps this, then, is one of the reasons for the criticism, even resentment, of some of NICE’s draft AAA guidance.

Where does this leave us? We are caught in the cleft stick of increasingly costly technological advances in healthcare, wanting to offer them to our patients where appropriate, but understanding that ultimately resources are finite. We will need to face this as a society and as individual clinicians sooner or later unless healthcare costs are to escalate uncontrollably. We surely need to understand that the technical advances that interest us may not be in the best interests of society at large, and accept this where it is the case. We need to allow trusted organisations to make these decisions for us, within an open and transparent process, and we need to allow that the art in medicine (and our joy in practising it) is retained but refocussed to help our patients navigate their therapy choices within the constraints imposed on us by those trusted organisations. NICE’s failure to stand firm on its principles in respect of this aspect of the AAA draft guidance sets an unfortunate precedent and makes these issues more difficult, not less.

My patient returns to clinic. He has spoken with his family and his wife. He wants an endovascular repair. Cognitive dissonance rages within me. I take a deep breath in, and begin….