Re: Harms from breast cancer screening outweigh benefits if death caused by treatment is included
Screening rapid response 31 jan 2013
Overdiagnosis, breast cancer screening, and the deadlock – a perspective from outside positivism
Several contradictions, incoherencies and 'silences' are revealed in the debates over the UK breast screening programmes (UKBCSP) and overdiagnosis. These absolute contradictions must make us think again about challenging what Greenhalgh has called the prevailing 'paradigm' for Evidence Bsed Medicine (EBM).1 The contradictions raise the possibilities that a) the, once revolutionary and emancipatory but now perhaps repressive, practice of EBM has been subsumed and distorted by political, economic and social forces and b) the patient is to some extent not as in control of her own destiny as we would like to think, but is always struggling to fit into a social order out there, is essentially 'split', whilst at the same time struggling to resist this 'order' and to be her own person. The subject can be said to be alienated from herself by language that is essential if we are to interact with the world, the ‘I’ who speaks (of the utterance) is alienated from the ‘I’ spoken about (of the uttered). EBM may be acting, largely invisibly, as an Ideological State Apparatus (ISA) under the influence of a repressive State.
In theoretical terms these ideas would be consistent with an Althusserian view of ideology and a Lacanian view of the subject, and language.(2,3,4)
So, what are these compelling contradictions in the discourse of the UKBCSP?
The Master Discourse – Independence
Susan Bewley (Obstetrician) and Klim mcPherson (Epidemiologist) called on Michael Richards (National Cancer Director acting on behalf of the Government) to organise an 'independent' UK review of the UKBCSP. (5,6,7) This followed Richard's comments that most UK 'experts' didn't 'trust' the findings of the Nordic Cochrane review by Gotzsche et al.(8) Such comments have remained unsubstantiated by any published evidence according to McPherson who alleges he was quietly told to cease asking for citations to support these claims by the mysterious UK experts.(9)
But, and here is the first puzzle, why would the Cochrane review not be ‘trusted’, and why would there be calls for a UK government and breast cancer charity sponsored so-called ‘independent’ review when a Cochrane review had just been published?
Concepts such as 'trust' and 'something going on behind the scenes' seem to appear here, perhaps something ’sinister’ to use Greenhalgh’s word.(1)
The Lancet editorial praised the so-called UK independent review as ‘the latest and best available evidence’. Richards said the report provided clarity, proof of the benefits of screening in terms of 1300 breast cancer deaths saved per year, and that women 'should continue to attend screening' (even whilst acknowledging overdiagnosis and suggesting women could now be given 'the facts' and even whilst the review acknowledged the large uncertainties in the data). Even in this edition of the BMJ Cliona Kirwan states: “Given the limitations of the evidence, the authors correctly conclude that breast screening is worthwhile ….. and the decision on whether to participate in screening is a personal one.(14) Such clarity, and superlatives, and the word: ‘should’ may signify an imperative master discourse, possibly signifying the authors as privileged holders of knowledge, knowing what is best for the subject. Kirwan’s statement suggest that the uncertainty is a ‘reason’ for the programme to continue, suggesting that there is no need for any better evidence, the programme should just continue, no matter how uncertain the evidence.
Baum, and others have criticised the review for ignoring the impacts of better treatments on the data, for ignoring 'all cause mortality', for ignoring deaths due to treatments and for excluding more recent data from observational studies. Kirwan’s editorial, the Lancet editorial, ignore Baum, and others. There is no debate occurring here, just opposition(10)
It is possible that there is a Binary Opposition here, between the ‘pro-screeners’ and the ‘pro-informed choicers’, a disagreement not amenable to rational argument or discussion. An opposition totally enclosed within a logical positivist framework, and one that needs to be refused if the deadlock is to be broken, by moving outside of this framework.
The fact that the UK ‘independent review was commissioned, the overblown rhetoric, and the imperative nature of the discourse all point to what is sinister here, the workings of the practice of EBM as an ideology, and ISA. Something all EBM enthusiasts should recognizes and begin to incorporate into their research, and practice. The ISA, is the site where resistance should take place.(2)
Railroaded
Two women diagnosed by screening were interviewed on radio 4, just after the publication of the review, this is available as a podcast.(11) One, felt she had been railroaded into cancer surgery, felt placed in an impossible situation with a complete lack of knowledge about the meaning of the diagnosis and yet felt compelled to comply with mastectomy as she felt urgently imperilled. "It takes a very strong woman at that point to say I'm not going to do anything.” she had entered screening unaware of overdiagnosis, and now campaigns for better information to be made available. The other woman, had 'ignored' two invitations until her husband found the third. She wanted the surgeon to remove both of her breasts when she had cancer diagnosed, felt her 'life had been saved' and now works for a breast cancer charity encouraging women to attend screening. She felt, in retrospect, that she had been 'absolutely stupid' to ignore the invitations.
How did the woman who ignored invitations become the woman relieved to have cancer diagnosed and now the woman encouraging others to respond to invitations? How did another woman accept an invitation, in good faith, only to end up feeling ‘railroaded’ into surgery, and now actively campaigning for more information to be made available? Do these transitions reveal the subject as essentially split, struggling to engage with a symbolic structure but then also resisting it, only to engage with another.
The Invitation
The invitation demands an urgent decision - which might be the decision to ignore it. It carries a weight of masterly command, an imperative to comply, an assumption or expectation of benefit? It seems to contradict, forestall or make redundant any subsequent attempt to enable any degree of self-determination by the woman. After all, the Citizen’s Jury and Richards ‘say women ‘should’ attend screening. (15) The degree of compulsion is hard to ignore.
The ‘Truth’, ‘free choice’, ‘amnesty’, ‘sincere belief’ and ‘shared decision making’, the name: ‘cancer’, ’reassurance and accuracy’
The language of the debates conducted by EBM 'experts' reveal these to be problematic concepts used in ways that expose contradictions, revealing flaws in the almost totally positivist 'expert' approach to the issue of overdiagnosis.
Welch and others argue that the proponents of screening (signified here as 'wrong', signifying himself as 'right' in a binary opposition not amenable to any rational discussion) are 'sincere in their belief' and should be offered an 'amnesty' so that we can 'move forward'.(12) It would seem an impossibility for people with sincere beliefs to be expected to say: "Oh, phew, thanks for the amnesty, we now acknowledge we are wrong and sincerely give up our sincere beliefs." As a 'timid explanation' perhaps we could see that 'sincere belief' is not enough to answer the question 'why?'. Perhaps, behind the scenes the screening proponents feel free to freely work for a system that demands screening. And perhaps this system could be EBM operating as an Ideological State Apparatus operating under a repressive political regime. Perhaps also Welch's suggestions demonstrate what will always be the failure of the positivists' approach to the problem of overdiagnosis. The failure to confront and investigate and indeed resist the ideology that enables people to freely behave in such contradictory (and repressive) ways.
There are suggestions that women be told 'The Truth' so that they can make their 'own informed decisions'.(12) This signifies the results of science sufficient to enable a women to determine her own choices. Some scientists might feel this is as far as their responsibilities go. It ignores the failure of science to provide any solution to excessive overdiagnosis. It ignores the ideological construction of this knowledge, the research questions dominating the research agendas, and it's manipulation by what could be described as an ISA, EBM today. It also ignores the nature of our subjectivity as constituted by our alienation from our selves by language. Perhaps we are always struggling to fit in and yet resist repressive ideologies, not ever capable of totally free autonomous choice.
Further contradictions can be found in the discourse around the name cancer, is it a ‘real cancer’, an ‘actual cancer’, or a ‘pseudo cancer’. When is a false positive diagnosis a false positive diagnosis? Whose perspective counts, the histopathologist now or the patient after her mastectomy?
As Miriam Pryke, in her rapid response in this series, points out the task of the so-called ‘Citizen’s jury’ reveals a revealing inconsistency:
“The jury expressed preference for the term ‘over-treatment’ to ‘over-diagnosis’ on the basis that it was easier to understand, and felt that benefits should be stated in terms of ‘lives saved’ rather than ‘deaths avoided’ because it was more positive. They were unable though to reach agreement on whether the leaflet should give priority to accuracy or to reassurance; most felt that it should aim for both.” (15)
Reassurance and accuracy could not be agreed upon. Is this because they contain a contradiction , as Miriam Pryke points out. To know the accuracy, as Kirwan acknowledges, the uncertainty, may not be that reassuring, suggesting Kirwan’s and Richards’ conclusion that the programme should continue because of the uncertainty, might be problematic.(11,14)
Perhaps a new paradigm for EBM should include these somewhat anti-humanist and no doubt easily ignored or derided possibilities. But the contradictions are there for all to see. EBM as an ISA may be a fantasy dream promising immortality as a poisonous opium for the masses, so that they can ignore life's contingent nature, it's mystery and our 'being-unto-death', even whilst, disavowing how unhappy starving for immortality can make you, and how something like cancer is being fetishised as ' the enemy to be resisted, always already present, haunting us. (13)
References
1. Greenhalgh T. Why do we always end up here? Evidence-based medicine's conceptual cul-de-sacs and some off-road alternative routes. J Prim Health Care 2011; 4(2):92-97.
2. Althusser L. For Marx. Harmondsworth: Penguin books; 1969.
3. Parker I. Lacanian Discourse Analysis in Psychology - Seven Theoretical Elements. Theory and psychology 2005; 15(2):163-182.
4. Pavon Cuellar D. From the Conscious Interior to an Exterior Unconscious. London: Karnac Books Ltd; 2010.
5. Bewley S. The NHS breast screening programme needs independent review. BMJ [ 2013 Available from: URL:BMJ 2011;343:d6894
6. McPherson K. Screening for breast cancer-balancing the debate. BMJ [ 2013 Available from: URL:BMJ 2012;340:c3106
7. McPherson K. review breast cancer screening evidence. BMJ [ 2013 Available from: URL:http://www.bmj.com/rapid-response/2011/11/03/review-breast-cancer-screen...
8. Gotzsche PC, Nielsen M. Screening for breast cancer with mammography. Cochrane Database Syst Rev 2011;(1):CD001877.
9. McPherson K. review breast cancer screening evidence. BMJ [ 2013 Available from: URL:http://www.bmj.com/rapid-response/2011/11/03/review-breast-cancer-screen...
10. Baum M. Re: Breast screening is beneficial, panel concludes, but women need to know about harms. Letter to BMJ
The Screening debate. BMJ 2013.
11. BBC radio 4 Today Programme. I was railroaded into cancer surgery. 30-10-2012.
Ref Type: Sound Recording
12. Gilbert Welch H. Cancer Survivor or Victim of Overdiagnosis. New York times 2012 Nov 22.
13. Gray, J. The Immortalisation Commission and the Strange Quest to Cheat death (2011)
14. Kirwan, C. Breast cancer screening: what does the future hold? BMJ 2013;346:f87
15. Hawkes, N. Citizen’s jury disagrees over whether screening leaflet should put reassurance before accuracy. BMJ 2012;345:e8047
Competing interests:
undertaking a PhD
"Overdiagnosis and Evidence Based Medicine - Positivism, Ideology and the Subject - A Lacanian/Althusserian Discourse Analysis"
Rapid Response:
Re: Harms from breast cancer screening outweigh benefits if death caused by treatment is included
Screening rapid response 31 jan 2013
Overdiagnosis, breast cancer screening, and the deadlock – a perspective from outside positivism
Several contradictions, incoherencies and 'silences' are revealed in the debates over the UK breast screening programmes (UKBCSP) and overdiagnosis. These absolute contradictions must make us think again about challenging what Greenhalgh has called the prevailing 'paradigm' for Evidence Bsed Medicine (EBM).1 The contradictions raise the possibilities that a) the, once revolutionary and emancipatory but now perhaps repressive, practice of EBM has been subsumed and distorted by political, economic and social forces and b) the patient is to some extent not as in control of her own destiny as we would like to think, but is always struggling to fit into a social order out there, is essentially 'split', whilst at the same time struggling to resist this 'order' and to be her own person. The subject can be said to be alienated from herself by language that is essential if we are to interact with the world, the ‘I’ who speaks (of the utterance) is alienated from the ‘I’ spoken about (of the uttered). EBM may be acting, largely invisibly, as an Ideological State Apparatus (ISA) under the influence of a repressive State.
In theoretical terms these ideas would be consistent with an Althusserian view of ideology and a Lacanian view of the subject, and language.(2,3,4)
So, what are these compelling contradictions in the discourse of the UKBCSP?
The Master Discourse – Independence
Susan Bewley (Obstetrician) and Klim mcPherson (Epidemiologist) called on Michael Richards (National Cancer Director acting on behalf of the Government) to organise an 'independent' UK review of the UKBCSP. (5,6,7) This followed Richard's comments that most UK 'experts' didn't 'trust' the findings of the Nordic Cochrane review by Gotzsche et al.(8) Such comments have remained unsubstantiated by any published evidence according to McPherson who alleges he was quietly told to cease asking for citations to support these claims by the mysterious UK experts.(9)
But, and here is the first puzzle, why would the Cochrane review not be ‘trusted’, and why would there be calls for a UK government and breast cancer charity sponsored so-called ‘independent’ review when a Cochrane review had just been published?
Concepts such as 'trust' and 'something going on behind the scenes' seem to appear here, perhaps something ’sinister’ to use Greenhalgh’s word.(1)
The Lancet editorial praised the so-called UK independent review as ‘the latest and best available evidence’. Richards said the report provided clarity, proof of the benefits of screening in terms of 1300 breast cancer deaths saved per year, and that women 'should continue to attend screening' (even whilst acknowledging overdiagnosis and suggesting women could now be given 'the facts' and even whilst the review acknowledged the large uncertainties in the data). Even in this edition of the BMJ Cliona Kirwan states: “Given the limitations of the evidence, the authors correctly conclude that breast screening is worthwhile ….. and the decision on whether to participate in screening is a personal one.(14) Such clarity, and superlatives, and the word: ‘should’ may signify an imperative master discourse, possibly signifying the authors as privileged holders of knowledge, knowing what is best for the subject. Kirwan’s statement suggest that the uncertainty is a ‘reason’ for the programme to continue, suggesting that there is no need for any better evidence, the programme should just continue, no matter how uncertain the evidence.
Baum, and others have criticised the review for ignoring the impacts of better treatments on the data, for ignoring 'all cause mortality', for ignoring deaths due to treatments and for excluding more recent data from observational studies. Kirwan’s editorial, the Lancet editorial, ignore Baum, and others. There is no debate occurring here, just opposition(10)
It is possible that there is a Binary Opposition here, between the ‘pro-screeners’ and the ‘pro-informed choicers’, a disagreement not amenable to rational argument or discussion. An opposition totally enclosed within a logical positivist framework, and one that needs to be refused if the deadlock is to be broken, by moving outside of this framework.
The fact that the UK ‘independent review was commissioned, the overblown rhetoric, and the imperative nature of the discourse all point to what is sinister here, the workings of the practice of EBM as an ideology, and ISA. Something all EBM enthusiasts should recognizes and begin to incorporate into their research, and practice. The ISA, is the site where resistance should take place.(2)
Railroaded
Two women diagnosed by screening were interviewed on radio 4, just after the publication of the review, this is available as a podcast.(11) One, felt she had been railroaded into cancer surgery, felt placed in an impossible situation with a complete lack of knowledge about the meaning of the diagnosis and yet felt compelled to comply with mastectomy as she felt urgently imperilled. "It takes a very strong woman at that point to say I'm not going to do anything.” she had entered screening unaware of overdiagnosis, and now campaigns for better information to be made available. The other woman, had 'ignored' two invitations until her husband found the third. She wanted the surgeon to remove both of her breasts when she had cancer diagnosed, felt her 'life had been saved' and now works for a breast cancer charity encouraging women to attend screening. She felt, in retrospect, that she had been 'absolutely stupid' to ignore the invitations.
How did the woman who ignored invitations become the woman relieved to have cancer diagnosed and now the woman encouraging others to respond to invitations? How did another woman accept an invitation, in good faith, only to end up feeling ‘railroaded’ into surgery, and now actively campaigning for more information to be made available? Do these transitions reveal the subject as essentially split, struggling to engage with a symbolic structure but then also resisting it, only to engage with another.
The Invitation
The invitation demands an urgent decision - which might be the decision to ignore it. It carries a weight of masterly command, an imperative to comply, an assumption or expectation of benefit? It seems to contradict, forestall or make redundant any subsequent attempt to enable any degree of self-determination by the woman. After all, the Citizen’s Jury and Richards ‘say women ‘should’ attend screening. (15) The degree of compulsion is hard to ignore.
The ‘Truth’, ‘free choice’, ‘amnesty’, ‘sincere belief’ and ‘shared decision making’, the name: ‘cancer’, ’reassurance and accuracy’
The language of the debates conducted by EBM 'experts' reveal these to be problematic concepts used in ways that expose contradictions, revealing flaws in the almost totally positivist 'expert' approach to the issue of overdiagnosis.
Welch and others argue that the proponents of screening (signified here as 'wrong', signifying himself as 'right' in a binary opposition not amenable to any rational discussion) are 'sincere in their belief' and should be offered an 'amnesty' so that we can 'move forward'.(12) It would seem an impossibility for people with sincere beliefs to be expected to say: "Oh, phew, thanks for the amnesty, we now acknowledge we are wrong and sincerely give up our sincere beliefs." As a 'timid explanation' perhaps we could see that 'sincere belief' is not enough to answer the question 'why?'. Perhaps, behind the scenes the screening proponents feel free to freely work for a system that demands screening. And perhaps this system could be EBM operating as an Ideological State Apparatus operating under a repressive political regime. Perhaps also Welch's suggestions demonstrate what will always be the failure of the positivists' approach to the problem of overdiagnosis. The failure to confront and investigate and indeed resist the ideology that enables people to freely behave in such contradictory (and repressive) ways.
There are suggestions that women be told 'The Truth' so that they can make their 'own informed decisions'.(12) This signifies the results of science sufficient to enable a women to determine her own choices. Some scientists might feel this is as far as their responsibilities go. It ignores the failure of science to provide any solution to excessive overdiagnosis. It ignores the ideological construction of this knowledge, the research questions dominating the research agendas, and it's manipulation by what could be described as an ISA, EBM today. It also ignores the nature of our subjectivity as constituted by our alienation from our selves by language. Perhaps we are always struggling to fit in and yet resist repressive ideologies, not ever capable of totally free autonomous choice.
Further contradictions can be found in the discourse around the name cancer, is it a ‘real cancer’, an ‘actual cancer’, or a ‘pseudo cancer’. When is a false positive diagnosis a false positive diagnosis? Whose perspective counts, the histopathologist now or the patient after her mastectomy?
As Miriam Pryke, in her rapid response in this series, points out the task of the so-called ‘Citizen’s jury’ reveals a revealing inconsistency:
“The jury expressed preference for the term ‘over-treatment’ to ‘over-diagnosis’ on the basis that it was easier to understand, and felt that benefits should be stated in terms of ‘lives saved’ rather than ‘deaths avoided’ because it was more positive. They were unable though to reach agreement on whether the leaflet should give priority to accuracy or to reassurance; most felt that it should aim for both.” (15)
Reassurance and accuracy could not be agreed upon. Is this because they contain a contradiction , as Miriam Pryke points out. To know the accuracy, as Kirwan acknowledges, the uncertainty, may not be that reassuring, suggesting Kirwan’s and Richards’ conclusion that the programme should continue because of the uncertainty, might be problematic.(11,14)
Perhaps a new paradigm for EBM should include these somewhat anti-humanist and no doubt easily ignored or derided possibilities. But the contradictions are there for all to see. EBM as an ISA may be a fantasy dream promising immortality as a poisonous opium for the masses, so that they can ignore life's contingent nature, it's mystery and our 'being-unto-death', even whilst, disavowing how unhappy starving for immortality can make you, and how something like cancer is being fetishised as ' the enemy to be resisted, always already present, haunting us. (13)
References
1. Greenhalgh T. Why do we always end up here? Evidence-based medicine's conceptual cul-de-sacs and some off-road alternative routes. J Prim Health Care 2011; 4(2):92-97.
2. Althusser L. For Marx. Harmondsworth: Penguin books; 1969.
3. Parker I. Lacanian Discourse Analysis in Psychology - Seven Theoretical Elements. Theory and psychology 2005; 15(2):163-182.
4. Pavon Cuellar D. From the Conscious Interior to an Exterior Unconscious. London: Karnac Books Ltd; 2010.
5. Bewley S. The NHS breast screening programme needs independent review. BMJ [ 2013 Available from: URL:BMJ 2011;343:d6894
6. McPherson K. Screening for breast cancer-balancing the debate. BMJ [ 2013 Available from: URL:BMJ 2012;340:c3106
7. McPherson K. review breast cancer screening evidence. BMJ [ 2013 Available from: URL:http://www.bmj.com/rapid-response/2011/11/03/review-breast-cancer-screen...
8. Gotzsche PC, Nielsen M. Screening for breast cancer with mammography. Cochrane Database Syst Rev 2011;(1):CD001877.
9. McPherson K. review breast cancer screening evidence. BMJ [ 2013 Available from: URL:http://www.bmj.com/rapid-response/2011/11/03/review-breast-cancer-screen...
10. Baum M. Re: Breast screening is beneficial, panel concludes, but women need to know about harms. Letter to BMJ
The Screening debate. BMJ 2013.
11. BBC radio 4 Today Programme. I was railroaded into cancer surgery. 30-10-2012.
Ref Type: Sound Recording
12. Gilbert Welch H. Cancer Survivor or Victim of Overdiagnosis. New York times 2012 Nov 22.
13. Gray, J. The Immortalisation Commission and the Strange Quest to Cheat death (2011)
14. Kirwan, C. Breast cancer screening: what does the future hold? BMJ 2013;346:f87
15. Hawkes, N. Citizen’s jury disagrees over whether screening leaflet should put reassurance before accuracy. BMJ 2012;345:e8047
Competing interests: undertaking a PhD "Overdiagnosis and Evidence Based Medicine - Positivism, Ideology and the Subject - A Lacanian/Althusserian Discourse Analysis"