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Its the inevitable cascade that follows the initial test that also needs to be borne in mind.

All screening, and other forms of anticipatory modes of care, applied to asymptomatic populations, rely on an apparent certainty based on a balance between two falsehoods, the false positive and the false negative. Over-diagnosis is inevitable. So I would be very wary of claims for a ‘clearly seen benefit’.

Claims for benefits to population health emerge from a politicised health care culture that overvalues anticipatory diagnoses that incite desire for protection from death through healthcare interventions. And I think, therefore, such claims should be regarded as unreliable.  

Benefits and Harms are not valued on a level playing field.  Beneficial effects on population health are measured in limited terms (e.g. lives saved due to a specific cancer), and are over-valued as clearly seen ‘effective truths’ for the ‘end-in-view’, the desire result (are seen as a warrant for the screening programme). 

The valuation of harm due to screening (anticipatory care) are often only measureable indirectly, and are de-valued by those specialists with a disease focus, rather than a collective welfare focus. They devalue harm by emphasising the benefits. And some harm, e.g. over-diagnosis may be impossible for an individual to imagine actually happening to him/her, and is therefore unvalue-able in any decision making process. This means that the process is anti-democratic because practitioners and the lay public are presented with inherently biased sets of values. 

Cervical screening is not universally accepted as a good thing: 

‘….. there has (shockingly) never been a proper RCT of cervical screening in normal risk women. So all estimates involve some guesswork, or modelling. (Archie Cochrane famously said of cervical screening that there has been “never has there been less appeal to evidence and more to opinion”)’ 

for references see:

http://margaretmccartney.com/2012/04/10/womens-hour-cervical-screening/

On Wed, Aug 9, 2017 at 4:21 AM, Glen Burgoyne <[log in to unmask]> wrote:
I feel there is a danger in painting all screening programs with the same brush. Each should judged on it own merits. While some are of dubious benefit ( eg. mammography), there are others that over time have proven to be of clear benefit in improving population health. Examples that come to mind include cervical cancer screening and possibly stool FIT testing for colon cancer. These are low tech, mimimally invasive techniques that can be easily implemented in large population groups. Glen Burgoyne. 

Sent from my iPhone

On Aug 8, 2017, at 3:06 AM, Bewley, Susan <[log in to unmask]> wrote:

Thanks. 


I agree with all this, but in terms of "the story" for people who don't see it, I wonder if blood letting is still a helpful analogy for talking to people to open their eyes?  People understand blood letting was a fashion that came and went. It used the wrong paradigm (the overexcitability/ humours) and screening is also wrong (often addressing invisible imaginary problems with overused 'trumpcard' cliches such as early detection is better or prevention is better than cure). 


As with blood letting, which eventually could be shown to increase mortality,  we here look at evidence and often see screening has no (or little) impact on mortality with much harm, and much avoidance of proper W&J rules (like UK NSC).   And where blood letting was aimed at "people who were already suffering in the present, and in fear of their life", isn't screening (esp in profit-making terms) about making asymptomatic people fearful, such that they are suffering and fear mortality?  Now I hope I can ask questions like 'where is the money flowing?' to someone who may be more likely to 'get it'.


"If you feel well, you are well" becomes a radical political slogan. I would be very grateful for better narratives as I've been ineffective so far and citing 'neoliberalism' or 'health moralism' doesn't open the minds of most of my colleagues/ friends.   


Susan 


From: Owen Dempsey <[log in to unmask]>
Sent: 06 August 2017 14:01
To: Bewley, Susan
Cc: EVIDENCE-BASED-HEALTH@JISCMAIL.AC.UK
Subject: Re: Rationality theories and decision making...
 
Hi Susan and all
Not impossible to address at individual intervention level. But I think we can use history to throw some light on the crisis of of healthcare. 

Learning from blood letting

 

‘In the aftermath of the French Revolution, François Joseph Victor Broussais (1772-1838), a Parisian doctor and a Jacobin, claimed that all fevers had the same origin: they were manifestations of the inflammation of organs. Accordingly, leeches were applied on the surface of the body corresponding to the inflamed organ and the resultant bloodletting was deemed to be an efficient treatment. For example, the chest of a patient suspected of having pneumonitis was covered with a multitude of leeches. Broussais's theories were highly regarded by contemporary French physicians. His influence can be assessed using an economic measure: in 1833 alone, France imported 42 million leeches for medical use. (Ackerknecht EH. Medicine at the Paris Hospital, 1794-1848. Baltimore: Johns Hopkins Press, 1967, p62 cited in Morabia, 2006, p158)

 

 

A strong critic of Broussais was Louis, described as  a pre-formal epidemiologist, who challenged blood letting and, after comparing mortality in early and late blood letting,  recommended restricting its use to only the most severe cases (of pneumonitis).

 

‘What did Louis find when he compared the evolution of the disease among the two groups of carefully selected patients he had assembled? He found that the duration of disease was an average of 3 days shorter in those who had been bled early compared with those who had been bled late. However, `three sevenths' (i.e., 44 %) of the patients who had been bled early died compared to `only one fourth' (i.e., 25 %) of those bled late, a result that Louis remarked was `startling and apparently absurd'.’ (Louis PCA. Researches On The Effects Of Bloodletting In Some Inflammatory Diseases. Boston: Hilliard, Gray, 1836 p9 cited in Morabia, 2006, p160)

 

 

Brouissais was one of the first to suggest that disease is simply an exaggeration of the normal, a manifestation of increased irritability, in other words an inevitable part of life itself, and qualitatively indistinuishable from life. In addition, Broussais was also a massive fan of blood letting, but, and this is significant, only as a treatment for people who were already symptomatic, as in ill, or suffering from disease (Broussais and Cooper, 1831).

 

Broussais’ theory about life and its continuity with disease, was probably quite a profound truth about life itself (as noted by the famous French philosopher Canguilhem, (Canguilhem, 1966), but Hacking notes that Auguste Comte (1798-1857) the French philosopher/sociologist hijacked this idea and accredited Broussais for inspiring his foundational ‘positivism’ (Hacking, 1990).

 

Comte’s positivism was the effort to identify features of social deviancy amongst the population so that they may be corrected and returned to ‘normal’, a normative normal, the desirable state of compliance with social order. This positivism instituted logical empiricism’s delusion that it can identify the point of threshold (the definite, diagnostic, finite observation, or test result) that can differentiate the pathological from the normal (see Canguilhem).

 

The implications for us?

 

Well, blood-letting was for symptomatic disease.  And, at that time, I don’t think capitalism had reached the neoliberal, and universalised, stage where even symptoms have become an apparently worthwhile or even profitable commodity for the sufferer.

 

Today, we have population-based modes of anticipatory care for the asymptomatic. Not all of these forms of care are necessarily significantly harmful, e.g. childhood immunisations, though even these programmes do cause concern.

 

So, below I have suggested some features of anticipatory modes of care that are a form of crisis for health care today.

 

The interventions that are emerging with ever greater intensity in the paradoxical crisis for EBHC:

 

1.     Are applied to an unsuspecting, asymptomatic, and uncomplaining population

2.     Diagnose: a) new disease categories (e.g. social anxiety disorder), b) discovers covert disease (e.g breast cancer screening), c) captures ‘new’ symptoms (e.g campaigns for people with cough to be screened, or lowering thresholds for GPs to refer for suspected cancer), or d) new risk (e.g. lowering risk threshold for treatment with Statins)

3.     Promise cure or salvation from death

4.     ‘Inculcate vulnerability’, fear, and invokes ‘the specter of death’

5.     Harm ‘some’ without any benefit (over-diagnosis)

6.     Cause harm that limits the individuals potential for living life, (including personal financial toxicity, in privately funded care)

7.     Limit funding for, or diverts funding from, other more cost effective services in budget limited public health services

 

If these apply, e.g breast cancer screening, Statins for primary prevention, and lowering thresholds for GP referrals of symptoms for cancer investigations, then:

 

1.     The empiricism that claims to be able to make these diagnostic claims should not be believed

2.     Market/State sponsored and enabled public health policy should be strongly distrusted

3.     We should know that the patient clinician decision-making processes demanded couldn’t be democratic, no matter how much transparency or information is provided (because over-diagnosis is unexperienceable and therefore unimaginable, and devalued, at the personal level).

4.     Efforts to highlight the harms (e.g. by emphasising the scale of over-diagnosis) are valuable, but alone are not enough, and if isolated may just encourage belief in empiricism’s wilder delusions

 

Finally, then, so blood-letting was bad.   It rationale assumed that disease, (after Broussais), was due to an excess of life’s normal state of excitation or inflammation, but blood letting, eventually, could be shown to increase mortality, and it was aimed, at least, at people who were already suffering in the present, and in fear of their life. 

 

Our contemporary crisis is a bit different, the underlying paradigm is political, and is capitalism, especially neoliberalism, and the belief in surplus, longevity, through exchanges with technology and expertise.  Neoliberalism uses empiricism to pathologise the asymptomatic in increasingly productive ways. Our sense of ourselves in capitalism is transformed to desire to be the patient who needs treatment, to be saved. The anticipatory health care paradigm is that disease can always be identified as a finite observation in even asymptomatic silent life, as pathological.  This is its major misrecognition of the truth of the body (Canguilhem), and it is applied to the well, uncomplaining, silent majority.


Owen

 

 

 

 

Broussais, J. & Cooper, W. (1831) On Irritation and Insanity. Columbia: SJM Morris.

Canguilhem, G. (1966) The Normal and the Pathological. New York: Zone Books.

Hacking, I. (1990) The normal state. In The Taming of Chance: Cambridge: Cambridge University Press, pp. 160-169.

Morabia, A. (2006) Pierre-Charles-Alexandre Louis and the evaluation of bloodletting. Journal of the Royal Society of Medicine, 99(3): 3.

 



On Sat, Aug 5, 2017 at 11:21 AM, Bewley, Susan <[log in to unmask]> wrote:
Thank you very much owen for making our task clearer, and for helping me think about our local issue of the UK Age-X trial (the largest rct in history that keeps growing, now planning 6m participants, with no real research question at its heart and to which women are not asked to give fully informed consent).

Given what you say, is it impossible to address this at the individual level, and/or can we draw upon history to find common themes/approaches? Is ALL (or most) screening a modern form of "blood-letting" based on utterly wrong paradigms - a painful purge with magical promise whereby the inconvenient facts of inefficacy and damage are ignored.  And, if so, can we be hopeful of finding a way forward in the rigourous academic study of defunct practices such as the use leeches to balance the humours?

until the next profitable fantasy.....

Susan Bewley  MA MD FRCOG
Professor of Complex Obstetrics, Kings College London
c/o Women's Health Academic Centre
10th floor North Wing, St Thomas' Hospital
Westminster Bridge Rd
London SE1 7EH

Tel 020 7188 4138
Fax 020 7188 1227
Mob 07984 907 548
Websites: http://kcl.academia.edu/susanbewley
http://www.kcl.ac.uk/schools/medicine/research/hscr/staff/bewley.html

P Please consider the environment before printing this e-mail!

From: Evidence based health (EBH) <EVIDENCE-BASED-HEALTH@JISCMAIL.AC.UK> on behalf of Owen Dempsey <[log in to unmask]>
Sent: 24 July 2017 09:21:50
To: EVIDENCE-BASED-HEALTH@JISCMAIL.AC.UK
Subject: Re: Rationality theories and decision making...
 

Interesting paper. Just some quick draft thoughts 


As far as I understand it the paper and the theories always assume a certain conception of the human being. For your paper it seems as though this  individual is always able to know his or her own mind as if he is a stable unitary identity - as if he or she has a stable and fully aware sense of self, and does not fool him or herself by not knowing (disbelieving) things he actually knows. 


This is an alternative  perspective that thinks of the human being as  intrinsically always struggling with a sense of self, identity, and so has a habit of 'latching on' to beliefs that provide a sense of meaning and stability (e.g. religion, but also any secular obsession can suffice: work, sport, other hobbies, and of course buying and selling, etc.) This is in contrast to the common concept of the rational human as Descartes' cogito, and its faith in its ability to know through science etc.  So this non-stable and, in a sense, divided subject does have a propensity to fool him or herself by not believing things he or she actually knows if it enables him or her to make meaning and construct a stable (ish) sense of self. 


Today many contemporary philosophers and thinkers out there think that capitalism provides the fantasy for this concept of the human being, and individual person,  to latch onto. The fantasy that surplus can be generated as long as we progressively innovate and exchange goods  in the free market. And this surplus, magically generated in exchange, includes surplus life, longevity. The individual is seduced by the promise of life-wealth through technologies that 'save life'. 


This fantasy enables us to know things 'very well' but to behave 'as if' they don't exist. Belief and knowledge, faith and reason, are divided. 


And it is suggested that this fantasy is supported by the irrationality (madness) at the core of the cogito, its megalomaniacal belief in its own all-knowing powers.


So we need theories of irrational belief meaning making theory that takes the divided non-cogito subject as it's basis: 


Here is an example of what a I mean - it's a bit long so only delve if inspired:  


Take breast cancer screening and the issue of overdiagnosis:


Choice, meaning and belief 


Overdiagnosis, as knowledge is 'true' but rendered meaningless (unbelievable) for decision makers under positivist and neoliberal capitalist pressures. 


It is  'evident', as in the Latin, e-videre, made to appear, but only as a ghostly phantom object, only through a mathematical negativity - the failure of screened diagnoses to be matched by cancer 'presentations' in a non-screened population, which only secondarily enables the deduction of  an apparent excess of cancer diagnoses diffusely spread across a screened population. 


As an object overdiagnosis  is uniquely abstract, it cannot be defined as an individual object, it is a non-attributable event and  cannot be experienced as such by any identifiable person, it is not directly observable. Or in Descartes' words it is not 'clearly seen'.  


So for a positivist like (one of its protagonists) the philosopher, in the 1940s,  Rudolf Carnap, it is 'empirically meaningless'.

 

The positivist rationality (version of what truth is) means overdiagnosis, as  abstract does not 'exist', as such, and therefore can only be 'tolerated' (Carnap) as a potential source of further useful ideas, but has no meaning or power to influence practical decision making at policy level. 


Liberalism lends a hand here by ensuring we are apparently free to govern ourselves in the name of national longevity and so  any socialist governmental tendencies are taboo. 


The state/expert/screening programme director etc. says we have clarity, we  'have a figure' for overdiagnosis so women have 'fair' information and can make a balanced. But this is disingenuous and politically/economically  motivated, where Machiavelli's 'effective truth' is in the 'desired result' limited, by a specific (neoliberal positivist) gaze, to 'saving lives from cancer'.  


Instead:


The woman's fear of death is evoked by screening invitations, just as, at the same time, her certainty of death, her certainty of mortality, is removed by the promise of salvation (the cure, and surplus life,  through early diagnosis), at the same time she is expected to face her mortality by being asked to consider and  imagine the screening process is faulty and to imagine experiencing something (overdiagnosis). To imagine, in other words, the combined pointless loss of her breast and a cancerful life, an event that is not actually experienceable by any individual. For her, fear mongering yet seductive establishment marketing pressures, as well as its unimaginable nature,  transforms overdiagnosis into an increasingly meaningless concept, which loses its power to resist the forces of capitalism, the screening cascade and dogma. This does not make for fair decision making. 


Therefore screening asymptomatic women for breast cancer is intrinsically exploitative because the decision making process can never be fair or balanced. The decision to have a screening programme is classically liberal, and capitalist, and positivist so can ignore overdiagnosis even as it says it has 'a figure'  for it. 


The irrationality is in empirical sciences assumption that it can pinpoint the threshold for disease in the asymptomatic person and the exploitation is in  the ruthless enslavement and destruction of women's bodies to maintain capitalist growth and expert power. 


The patient exposed to screening has symptoms dragged from her and is coerced into believing, the capitalist fantasy, and  in the salvatory powers of the cancer industry and into becoming just so much raw material. 


The rationality of positivism and of a liberalism founded on and maintained by a fear of death becomes a necropolitics of healthcare. 


The patient and doctor are intrinsically susceptible to capitalism's fantasy of the possibility of limitless acquisition of surplus life through the repetitive exchange of medical interventions. This is because we are at core always struggling with finding a sense of stable identity. Our identity is provided through making meanings and is always in flux. We should try to bear this in mind when we are implementing population based interventions that prey on our susceptibility to fantasy and belief.


Owen  







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