Why cancer patients need a new friend
Forgive my unusual reticence but I want to recognise at the outset that this post is addressing an issue which is deeply personal and emotional for those affected, and that I have no proper expertise to justify me wading in. But after a lot of thought I concluded it was better to risk my views being wrong than simply to avoid the issue…
When something surprising happens on three occasions it may be time to question the assumptions which made it surprising in the first place. The surprise has been three acquaintances of mine who have, in way or another, defied terminal cancer diagnoses. In one case the person appears to be in long term remission and the other two people – while still terminally ill – are enjoying a worthwhile quality of life well beyond the prognosis they were initially given.
Although every case is different and each involves great individual courage and determination, there are also certain aspects in common. The patients and their loved ones went to great lengths to make sure they were genuinely getting the best advice and treatment available. Each person – being educated, middle class and reasonably well off – had an attitude of mind and a variety of resources which made it possible for them to challenge the original pessimistic diagnosis. In none of the cases was it simply that the patients threw money at their condition, much more significant was mining the internet and personal connections to find doctors with a particular interest and expertise in their specific condition.
It could be that these cases are exceptions. It might also be that the NHS errs on the side of pessimism when it gives terminal diagnoses, not wanting to add false hope to an already tragic situation. But there is another, more structural, explanation. People become doctors and nurses because they want to save and improve lives. The NHS is getting better – as are all developed world health systems – at treating cancers where there is now a good chance of survival beyond five years. For example, breast cancer survival rates for older women have improved substantially. The NHS is also getting better at empowering people with long term chronic conditions so that they can be more active managers of their own conditions.
In these cases NHS staff are saving lives and – in the case of chronic disease management – saving money through better forms of care. But these motivations are much weaker when a cancer diagnosis is terminal. By definition the person is not expected to get better, and for a cash strapped service the thin possibility of extending a diminished quality of life for a comparatively short time may not seem worth pursuing in the face of other pressures. These are some of the issues raised recently in the case of terminally ill Janet Tracey whose husband claims that doctors at Addenbrooke’s hospital, Cambridge, twice put ‘do not resuscitate’ orders in his wife’s medical notes despite her demanding it be removed after the first time.
The idea that structural, incentive-related, reasons lie behind undue fatalism towards people with apparently terminal conditions may be reinforced by observing the converse experience in the USA. Because many patients there are coved by medical insurance plans, which in effect offer a blank cheque for treatment, concern has been expressed at overtreatment, as people are subject to painful and invasive interventions with very limited chances of success.
If – as the experience of my friends strongly suggests – patients with terminal diagnoses who have personal resources are systematically able to extend their life beyond the expectations offered by the NHS, the obvious question is; ‘what can be done for those without such resources?’ How could they be supported and given what is surely their right – a chance to pursue every reasonable avenue before they accept death? Every year hundreds of thousands of people are given terminal cancer diagnoses. How many of them are being robbed of the vital extra time to organise their affairs, be with loved ones, or even fulfill lifelong ambitions?
The answer may be a specialist, independent service to which anyone with a terminal diagnosis can turn for expert advice and advocacy. Such a service would need clinicians at the helm, particularly to engage their medical colleagues, but could be largely staffed by people with a background in medical research or the pharmaceutical industry.
Each of my friends is haunted by the knowledge that they would not be alive today if they had not fought as they have and it leaves them with an understandable suspicion of future NHS prognoses. So, even if the service is not able to offer any more hope than the NHS, it will at least give patients and carers the invaluable peace of mind of knowing they really couldn’t have done more.
I suspect that if my post is noticed in such quarters, I will receive comments from people in existing cancer charity and patients’ groups saying that just such a service is on offer. It is certainly true that there are some great on-line resources now emerging, the best of which in the US involve doctors giving their time to join on-line conversations with patients about the latest treatments and trials.
However, cancer charities need to maintain good relations with the NHS and fighting hard for terminal patients’ rights may not fit easily with this. Macmillan is an amazing charity that does great work but – as I understand it – its focus is on care and support rather than advocacy or independent medical advice. Also, while there are good charities raising money for each into the cancers with the worst prognoses, the brutal truth is that patients’ groups will be weaker in these areas for the simple reason that people do not survive very long with the conditions.
I can even think of an equitable way of funding such an advice and advocacy service. After an initial consultation patients and carers who decide they want ongoing support could be asked to agree to donate a small percentage of the patient’s legacy. Such a system would thus take more from the well off to fund a service almost certainly most needed by the poorest.
Most of us don’t like to think about terminal illness (indeed I suspect we even harbour a superstitious fear that to think about it makes us more vulnerable). And I know I am going way out of my own areas of expertise in writing this post, but when I think of how valuable is the extra time is that my friends have now earned and how hard they and their loved ones had to fight to win this time, then I’m sure the issues their stories raise deserve a wider airing.
In defence of brains
The backlash against what Ray Tallis calls ‘neuromania’ is in full swing. As well as Tallis (you can download my recent debate with him from the RSA website) there is, for example, a pretty damning critique of David Brooks’ book, The Social Animal in a recent New York Review. Indeed on the same topic I recently endured what must be the worst argument I have ever had as an adult with my father. I am sure there were diners sitting on the other side of the restaurant who heard him slam the table and exclaim furiously ‘my appreciation of art has got sod all to do with bloody neural pathways!’.
Later this week I begin recording a new three part Radio 4 series on the brain and society (modest fee to the RSA and a plug for us too). So I will have these various critiques of neurobollocks (another Tallis neologism) and scientific reductionism ringing in my ears.
In the Tallis debate I happily accepted some of Ray’s points. I do think the mind is more than the brain. I agree that non-scientists can become over-enamoured with sometimes very speculative bits of science and jump to huge and unwarranted conclusions about the self and society. For me, the most valuable aspect of current explosion of interest and research in brains and behaviour is when reflection, everyday observation, science and social science are put together to help to deepen our interest in an issue.
Here’s an example that I have been pondering over in the last few weeks. One of my sons combines great intelligence, teenage moodiness and slight tendency to pessimism. When he is down he has the ability to develop an explanation for his mood, usually one which involves the failings of his loved ones or adults in authority. On holiday in Spain recently I found myself warning him against the danger of rationalising. Sometimes, I argued a mood just comes over us. If it is negative the best thing may simply be to try to dismiss it rather than look for a cause to which to attach it.
I’m not sure my argument made much impression, but as is so often the case (and in keeping with the argument), it is only when you find yourself saying something that you start thinking seriously about whether it’s true.
My tentative view is this; very often our moods are the result of either physiological or ephemeral events: on the one hand, we are tired, we are going down with something, we have suffered a minor allergic reaction; on the other, we are affected by a forgotten overnight dream, an unconscious association with the past, a connection between thoughts which occurs without us being fully aware of it.
But, as science fiction writer Robert Heinlein once said, ‘man is rationalising animal not a rational one’. So when a mood comes over us we naturally look for a rational explanation, a tendency enhanced by the reflexive way modern people think of themselves in the world. Finding a rational cause for our emotions has the upside of suggesting a way to intervene to restore our equanimity. The downside is that we may make the ephemeral substantive and take decisions on the basis of false attribution. It also means that the messages we receive can be very powerful. As we swing gently from contentment to discontentment, there are plenty of advertisers out there offering us erroneous explanations based on whether we have, or have not, bought certain products recently.
If this view is correct it suggests that people like my son and me, who have a tendency to over rationalise, could adopt two contrasting strategies in the face of mood shifts. First, and foremost, don’t assume they mean anything, or at least anything to which we can usefully respond. Second, if they are strong feelings or they persist, think more deeply about what has set off the mood; don’t assume the obvious, explore a range of explanations from the physical to the subconscious (by the time you’ve gone through all the possibilities your mood will probably have sorted itself out).
I am not suggesting this is an original idea. Philosophers, novelists and poets have all explored the elusive basis of emotions much more elegantly than me, but, the idea that most moods start off with non-conscious processes and that that we subsequently attach them to ‘causes’ of which are conscious could be explored through – among other things – observations of behaviour and mapping neurological processes. As a research question it has some similarities with the controversy set off by Benjamin Libet’s classic research on what comes first the action or the decision to act.
This post only scratches at the surface of a complex issue and a huge and well-rehearsed debate. I guess my point, as I embark on the radio series, is that good science and social science does not have to reduce the big issues to simple ones but offers us new angles from which to ponder some of the eternal questions (the kind of questions we often ask ourselves) about why we act as we do and how we might live better.
Are we really in a terrible state?
Earlier this week I suggested that progressives (yes, I do know this is a vague and flabby term, but it will have to do for now) should resist the temptation to abandon aspirations for good central government in favour of what I called lazy localism. By coincidence two stories from different sides of the world underline this point.
The first is the depressing news that, even after the event had been postponed in an attempt to drum up more interest, only four out of 54 of the continent’s heads of state turned up at yesterday’s African Union donor conference to discuss famine relief in the Horn of Africa. The background to this failure is described in a piece by Michael Holman in this month’s Prospect. Holman argues that the scale and ubiquity of aid agencies in Africa has allowed state and citizens to wash their hands of responsibility for tackling today’s crises or avoiding tomorrow’s:
‘a vicious cycle has been created. As the state surrenders many of its core responsibilities to aid agencies, its capacity to manage deteriorates. In the process, it loses some of the country’s brightest and best to the NGOs and UN agencies, who offer salaries that local employers cannot match’
The other story is the emergence of Rick Perry to become the favorite for the Republican Presidential nomination. Being right wing and outspoken, Perry is very quotable (both by his supporters and his opponents). One of his most famous offerings is his promise to make federal government as “inconsequential in your life as I can”.
So, while for NGOs in Africa, there is simply no time to wait for responsible and effective states to emerge, in America the leading right of centre politician promises the state can wither away to irrelevance.
This way of thinking is encouraged by a kind of hostile reification in which the state is seen to be something entirely separate to that which it actually comprises. In democracies the state is, in essence, the agency which carries out the popular will. Of course, there are all sorts of critiques of this assertion. From the left, the state will be seen as inevitably ending up serving the interests of global capital and social elites, from the right the state is seen as falling into the hands of producer and other interests, all of whom want the state to grow at the expense of individual freedom. The problem is that these accounts of the vulnerabilities of the state have – with the able assistance of the mass media – come to define its very nature.
But if the weakness of states in Africa was expressed as the failure of populations to agree and implement collective actions it would be apparent that no sustainable progress is possible without state building. If in America the state was seen as the vehicle by which the nation (through its beloved constitution) agreed to act together, then Perry’s idea that a good country is one in which the population abandons any attempt at nationwide collective action would be seen as the nihilistic ideology that it is – an attack not on Washington but on nationhood itself.
Indifference, resignation or hostility to effective national government is foolish and dangerous. As I said the other day, we need to disentangle the various critiques of administrative centralism, the inadequacy of representative democracy, the limited autonomy of nation states, the weakness of political parties, the character flaws of politicians, in order to start to mount a defence of what good (which doesn’t mean big) national governance could be.
There have been lots of interesting projects looking at aspects of the problem of the centre. The Power Inquiry explored the need to renew democracy. Ippr, Reform and other think tanks have suggested ways of modernising Whitehall, but in the face of an overall decline in faith in the democratic state as such, it is time for a more holistic exploration of the foundations of modern governance.
‘Principles and practices for 21st century national governance’ – sounds like a good research project. Anyone fancy funding it?
Can the centre be saved?
It is interesting to read two articles exploring localism and the future of Labour. Any interest I may have in the Opposition’s political strategy is not for an RSA blog, but I hope I will be excused some pondering on the wider issue of whether national governments can deliver progressive change.
The articles are a rather trite Mark Malloch Brown piece in the current Prospect – in essence arguing that Labour must become more localist in its policy and organisation – and a much richer and more thoughtful commentary on Maurice Glasman’s Blue Labour penned by David Runciman in a recent London Review of Books.
While Malloch Brown simply asserts (albeit with some interesting international references) that localism is the way forward, Runciman argues that Blue Labour’s hostility to liberalism is, on closer inspection, an implicit antagonism to the processes of national representative democracy and the type of governance that tends to flow from it.
Like Malloch Brown I can be a lazy localist (that’s probably why I am being so critical of his piece). The ugliness of Westminster politics and the clumsiness of Whitehall government provide a seemingly infinite list of annoying and amusing targets.
Geoff Mulgan once said to me something like; ‘if there’s one best way to do things the centre should mandate it, but if there are several it should be devolved. Unfortunately, Whitehall massively exaggerates the number of problems with one best solutions’. Exactly. I also think that the more a public service or social outcome depends upon relationships between state and citizen which go beyond the most simply transactional, the stronger is the case for locally determined solutions.
But this doesn’t mean the centre doesn’t matter or that progressives (of whatever Party) should abandon Westminster and head for the fields. For a start localists need a central Government committed to localising in an intelligent way (so far the Coalition gets two thirds of a tick for the former and a third for the latter). There are also big issues (climate change) and powerful forces (banks) to which only central Government can realistically face up. Thirdly, it is national Government which has to be the driving force behind progressive internationalism (it has been argued that one reason why Americans are reluctant internationalists is that they don’t trust federal Government to negotiate on their behalf).
This is a big topic and blog posts should be short, but in the face of lazy localism I think we need to try to untangle the various aspects of the apparent loss of faith in the centre among many progressives. Here are some of the main elements (and a top of the head rebuttal)
- The centre is simply the handmaiden of global capitalism (this may be the view of the current and previous Government – although if it is I think it is a little unfair – but a quick glance at the difference between, say, Finnish, Italian and American societies indicate there are many different ways of being part of the global capitalist economy)
- Westminster party politics (and the way it is reported) is stupid, adversarial and dishonest (OK, but is it possible to imagine it being different? And what about the parts that are rather impressive such as the best work of select committees?)
- Whitehall is high handed and incompetent (this is simply too much of a generalisation and anyway local politics is hardly always a cradle of enlightenment and collaboration)
As a Malloch Brown says, the Coalition has its own answer to the strong centre. A combination of somewhat cack handed decentralisation and the rolling back of public spending means the centre will become much, much, smaller (although it was interesting to see David Cameron wasn’t averse in response to the recent disorder to either dictating operational policy from Number Ten or spending more money).
So perhaps this is an opportunity; not to wait for the pendulum of public opinion to swing back to central programmes and national service standard gaurantees (which, by the way, it inevitably, eventually, will), nor to abandon the centre in favour of community politics. but to start to explore more deeply what might be the characteristics of a progressive national polity.
Let’s have a lively debate….
I know it is a trite observation, but it is poignant to see Libyans, Syrians and other brave Arab citizens laying down their lives for greater democracy at just the time when the mature democracies of the United States and Europe seem almost incapable of resolving failings of fiscal management, financial regulation and international cooperation which have left us in the economic doldrums and still teetering on the edge of something much worse. Indeed the prospects of recovery in the Western economies substantially depend on the continued success of the authoritarian regime in China.
Apparently, the international community is seeking to ensure that the Libyan National Transitional Council avoids the mistakes in shaping a new democratic state that have led to the protracted conflict and deeply flawed governance of Iraq and Afghanistan. I imagine that the advice to the Council will focus on issues of reconciliation, security and the rule of law, representation, as well as governance capacity and process. In an emergency these may be the right priorities, but I hope too that there will be space to talk about styles of leadership and the structure of public discourse.
Here the key goals should be: pluralism and mutual respect, open and informed debate, and a definition of the political sphere which incorporates formal and informal civil society. Advisors to the new Libyan leadership should not just reflect on what has gone wrong in new democracies but also on what is going wrong in the mature ones.
Imagine if the visceral adversarialism, ideological dogmatism and detachment from reality which categorised the recent debate over raising the US debt ceiling was transferred to the volatile setting of Libya. Or imagine if the new free media in Libya was to adopt the approach to editorial balance and responsibility applied by Fox News.
This is one reason why I think fostering intelligent, balanced, dare I say it ‘polite’, debate is an important public service. Being able to participate in and appreciate such debate is a crucial but massively under-rated civic capacity.
Without, I hope, sounding too pious this is also my main motivation (apart, that is, from vanity and Oedipal competition) for spending quite a bit of time working on media projects over the summer. Tonight, for example, I am chairing a debate about hate crime which is being hosted by Radio 4. The programme (broadcast tomorrow night at 
is an experiment in having debates to take up issues highlighted in radio drama and will follow a fine radio play by Simon Armitage (which went out at 14.15 today) about the murder of Sophie Lancaster, killed by youths who objected to her being a ‘goth’.
It’s risky setting out my aims so soon before everyone gets to found out whether they are met, but my hope is that we can cover the issues, connect with people’s experiences and strong passions but also try to find out what people agree about and also – crucially – what they agree they disagree about.
Respectfully agreeing what you disagree about – it may sound like a dry, academic kind of aspiration but I think it is central to achieving the kind of enlightened democracy the world needs right now. If it’s the kind of attribute we are encouraging in Libya, let’s hope we get judged more by what we say than what we do!
Ps while I’m on my broadcasting career, I sadly haven’t found anyone who heard my programme about the amazing and tragic scientist and good samaritan George Price. If you fancy a listen, it’s only short and quite poignant – you can hear it here. Thanks
RSA Animate
RSA Mobile
RSA Comment- RSA Projects Blogs
- Twitter @RSAMatthew
RSA Bookshop
The RSA Bookshop, in partnership with Blackwell's the UK's leading academic bookseller, offers Fellows and friends an opportunity to purchase books and to explore our speakers’ ideas in greater detail. Visit the RSA Bookshop.