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Surdiagnostic:peur et appt du gainLe 3me colloque de Bobigny:Sur- et sous-mdicalisation, surdiagnostics, surtraitements25 et 26 avril 20141

My first question to you is why is it so easy to see the harm inflicted by doctors in previous generations and so hard to see the harms that we ourselves are doing?2

Throughout human history, unscrupulous people have sought to make money out of human illness and today, perhaps more than ever before, they are being actively helped by the wishful thinking of good intentions. 3

Look at the increase in the prescribing of antihypertensive drugs across the richer countries of the world over the last decade for some reason Canada only has the 2011 figures but you seem to be well in line with the other OECD countries.4

Here are anticholesterol drugs. Are these rates of prescription justified with their costs and their potential for harm?5Lignes directrices de la Socit europenne de cardiologie mises en 2003:Tension artrielle suprieure 140/90Cholestrol srique de 5Mmol/l6More than ten years ago, the 2003 European Society of Cardiology (ESC) guidelines suggested screening for blood pressure above 140/90, with no age cut off, and serum cholesterol of above 5mmol/l to identify those at risk of ischaemic heart disease. The clinician was not necessarily required to start treatment at these levels but is expected to inform the patient that these measurements mean that he or she is at increased cardiovascular risk. Prvalence ponctuelle dindividus de 20 79 ans (hommes et femmes confondus) atteints dhypertension artrielle ou dhypercholestrolmie, selon les lignes directrices europennes mises en 2003 sur la prvention des maladies cardiovasculaires en pratique clinique

7Linn Getz and colleagues applied these thresholds to the entire adult population of the Norwegian county of Nord-Trndelag. The Nord Trndelag health survey collected measurements of blood pressure and cholesterol for some 62 000 adults aged 20-79 in 1995-7. When the European guidelines are applied, half of the population are considered to be at risk by the early age of 24 years. By the age of 49, this proportion rises to 90% and as much as 76% of the total adult population are found to be at increased risk. Yet -

Esprance de vie la naissance:France 82 ansNorvge 81 ansRoyaume-Uni 80 anstats-Unis 79 ansRussie 69 ansSomalie 50 ansSierra Leone 47 ans8Current life expectancy at birth in Norway is 81 years, making this, alongside Canada, one of the longest living populations ever. Something appears to be going very wrong it is simply not possible for three quarters of one of the longest living populations in history to be at increased risk of early death and yet, fear is sewn in every preventive health consultation which follows these guidelines and fear itself throws a shadow across life and undermines health. This is a massive exercise in overdiagnosis and iatrogenic harm.

9In this book, as I think in all his work, the writer John Berger seems to identify what really matters in life as being - Nouer des relations humaines

Tcher de dire la vrit10La chose savoir avec certitude, cest si tu mens ou si tu essaies de dire la vrit. Tu ne peux plus te permettre de confondre les deux.John BergerDici l, Paris, ditions de lOlivier, 20061112More and more I believe that these are the two most important things in every aspect of human life and certainly within healthcare when I started thinking about this, I thought that these were two rather separate things but I now think that they are profoundly interwoven. Lets start with trying to tell the truth - Bienfaits et mfaits de la mdecine scientifique12Science is the foundation of our professions attempt to tell the truth the serious study of medical science is absolutely essential for all of us but it is never enough there is much more to the practice of medicine than the science on which it claims to be based. And in trying to tell the truth, we need to acknowledge the harms of scientific medicine alongside its potential for good its pretension to knowledge that does not stand up to scrutiny, its exclusion of other important sources of knowledge, and its corruption by conflicts of interest and by wishful thinkingPersonne MFAITMICROMACRODpersonnalisation au nom de lutilitarisme en sant publique (au nom de la justice?)Dpersonnalisation au nom de la science biomdicale 13People are harmed, to a greater or lesser extent whenever they are objectified and depersonalised. In medicine this is driven by a toxic combination - on the macro scale by public health utilitarianism in the name of justice and on the micro scale by the imperatives of biomedical science. All we have to counter these harms are the strength of human relationships and the capacity they have to reassert the subjectivity of the individual person.

The main engine of overdiagnosis is the medical technology industry that enables healthcare professionals to investigate more and more minutely and to measure and assign numbers to an ever increasing number of biometric parameters. These numbers are almost always normally distributed along a continuum and at one extreme represent a degree of abnormality which begins to correlate with symptoms and suffering that can be ameliorated or even cured by medical treatment. So far, so good.

The problem is that yet another toxic combination this time of vested interest and good intentions - produces continual pressure to extend the range of abnormal, shifting the demarcation point further into the territory previously considered normal. This is encouraged by entrenched belief in such old adages as prevention is better than cure and a stitch in time saves nine. These ancient sayings are imbibed at such a young age that they seem to assume an almost mythological aura of truth and - 14

- we have neglected the Popperian imperative of investigating why they might be wrong.15

In our enthusiasm, we have allowed ourselves to forget this immensely important document published by the World Health Organisation in 1968. Now I am at the end of my career in 1970 I was just at the beginning as a preclinical medical student. So, back then, in this book, Wilson and Jungner wrote:16La notion de diagnostic et de traitement prcoces des maladies est simple dans son principe. Toutefois, son application dans de bonnes conditions (dune part faire en sorte que les sujets atteints dune maladie auparavant non dcele reoivent un traitement, dautre part viter de nuire aux individus nayant pas besoin de traitement), qui parat souvent trompeusement facile, pose en ralit des problmes complexes.J.M.G. Wilson et G. Jungner, Principes et pratique du dpistage des maladies, Genve, OMS, 1970, p.28.17The truth of this has been demonstrated over and over again during the intervening 4 decades and yet we still fall into the same traps remember the 10 principles -

And it seems to me that we have neglected all of these but particularly perhaps numbers 7 and 9. Screening mammography is falling foul of both of these and, in the UK, the latest government enthusiasm is for earlier and earlier diagnosis of dementia when we absolutely fail to understand how to identify the small proportion of those with mild cognitive impairment who will progress to full-blown dementia and we already have inadequate provision for the care and support of those who have already been diagnosed.

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19In pursuing the supposedly self-evident truth that prevention is better than cure, we have, for the first time in history, separated our notions of disease from the human experience of suffering and have created an epidemic of disease without symptoms, defined only by aberrant biometrics. An ever greater proportion of healthcare resources are directed towards reducing these numbers to some fictitious state of normality and, in the process, those who are perfectly well are not only assigned labels, that in themselves can be shown to compromise health, but are also exposed to treatments with significant adverse effects. Yet, time and time again, politicians are unable to resist the easy attractions of preventive rhetoric; because, if nothing else, this serves to distract attention from governments failure to meet its own responsibilities for health protection through fiscal and legislative measures, in terms of promoting greater socioeconomic equity, nurturing vulnerable families, and such policies as minimum pricing for alcohol and plain packaging for cigarettes. Lorsque les Okies ont quitt lOklahoma pour stablir en Californie, ils ont hauss le niveau intellectuel des deux tats.Will Rogers 1879-1935

20Extending the range of abnormal clearly expands markets for pharmaceutical and other interventions, and thereby the possibilities of maximising commercial profit. It also invokes the Will Rogers phenomenon -

- Which was first applied to medicine by Alvan Feinstein and colleagues in 1985. The phenomenon occurs whenever the range of a diagnostic category is extended. As more and more people previously considered normal are included within the definition of, for example, hypertension or diabetes or breast cancer, outcomes improve: rates of hypertensive stroke or diabetic foot amputation or breast cancer mortality appear to fall. In this way, extending the definitions of disease and lowering the thresholds for preventive interventions create the illusion of improved population outcomes, while there is no difference at all in the outcomes for affected individuals. Clinicians, health policy-makers and politicians have found it very difficult to resist these seductive illusions of progress.21Des solutions techniques desproblmes existentielsThe whole discipline of medicine has colluded in the wider societal project of seeking technical solutions to the existential problems posed by distress, suffering and the finitude of life and the inevitability of ageing, loss and death

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Look at the increases in antidepressant prescribing over the last decade with Canada coming close to leading the field we have been trying to treat all sorts of distress and unhappiness however understandable with a biotechnical solution that causes significant harms.

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We start out in medicine and, rather unbelievably, this is me starting clinical medicine in 1971 we are undoubtedly motivated by good intentions we want to do good and to help people. We are taught that we can achieve these great objectives by doing things to people by performing operations, applying treatments and prescribing medications. We are taught to do, to intervene, to be active we are very seldom asked to consider the potential harms of what we do.24

This wise old woman is the British philosopher Mary Midgley who writes:

25Ce nouveau pouvoir exerce sur nous une fascination qui donne lieu aujourdhui cette volution effrne de la technologie, en partie utile et en partie inutile, et la dangereuse ampleur quatteint le gaspillage des ressources. Sil nous est si difficile de stopper lincessante monte des besoins, cest que notre re se proccupe vivement de lamlioration constante des moyens plutt que de rflchir aux fins, ce qui nous pargnerait bien des soucis.Mary MidgleyScience and Poetry, 2001 [traduction libre]

We have become the age of unthinking doing keep doing, dont stop to think theres no time! And theres no time because we are too busy doing. And we worry about the means and forget about the ends.26Les fins de la mdecine:Soulager la douleur;Soigner les malades et les mourants;Gurir la maladie;Accrotre la longvit;Se doter dun effectif performant et en sant;Vendre des produits pharmaceutiques.

Here are several possible candidates for the end of medicine each of which mandates quite different means and it seems to me that we have never sufficiently understood the contradictions and conflicts between these different ends the first two or three concern sick individuals four and five require population based interventions. If we prioritise increased longevity, we may simply add to the sum of human suffering etc etc.

What is the hierarchy of ends? Who decides?

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28This book, by Dutch philosopher Annmarie Mol, is about the difficult iterative nature of the care of the sick and suffering familiar to all doctors whatever their healthcare setting she writes - Vous faites ce que vous pouvez, vous essayez encore et encore. Vous soignez, mais vous navez pas le contrle. Et en dfinitive, le rsultat nest pas glorieux: dans la vie avec le diabte, lhistoire ne se termine pas par ils vcurent heureux jusqu la fin des temps. Elle se termine par la mort. Annemarie MolCe que soigner veut dire: repenser le libre choix du patient, 200929All human stories and all human lives end in death however much we like to pretend the opposite and the possibility of death, however unacknowledged, is present in every healthcare interaction.

This paper by the Harvard medical historian Charles Rosenberg asks a crucially important question - 30Comment faire face la mort, qui nest pas prcisment une maladie, lorsque les impratifs dingniosit technique et les revendications activistes font pratiquement cho aux attentes de la socit envers la mdecine? Charles E RosenbergThe Tyranny of Diagnosis: specific entities and individual experience. The Milbank Quarterly 2002; 80(2): 237-260 [traduction libre].31Des solutions techniques desproblmes existentielsThe great misguided project of the last 50 years has been the application of technical solutions to the existential problems. We have turned away from the enduring human task of finding some sense of meaning in the face of the limitations of life by diverting our attention to the technical means of survival

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33But it is no use, the existential tasks persist despite the apparently increasing potency of our means. Valentine God-Darel died 1915.

This grave stone from 1788, reads:

Affliction sore long time I bore, Physicians were in vainTill God did pleaseDeath should me seizeAnd ease me of my pain.

Death curtails our joys but it also sets limits to our misery

Bioethicist Daniel Callahan describes what he has termed The Difficult Child of Medical Progress

34- la proportion de patients (1%) qui accaparent quelque 21% du cot des soins de sant, et qui souvent finissent par succomber la dfaillance polyviscrale, illustrent le problme du progrs. Il y a cinquante ans, ces patients auraient vcu moins longtemps et, dans bien des cas, ils auraient moins souffert. Nous avons remplac des vies courtes et des dcs rapides par leur contraire: des vies prolonges et des morts plus lentes.Daniel Callahan. The Difficult Child of Medical Progress,Bioethics Forum, 2012 [traduction libre]3512I remain profoundly uncertain as to how good a trade this is.

This is of course Samuel Beckett who is described by the literary critic Christopher Ricks as:36 le grand crivain dune poque qui a cr de nouvelles possibilits et de nouvelles impossibilits, mme au chapitre de la mort. Une poque qui a prolong la dure de vie, jusqu ce que celle-ci tienne autant du cauchemar que de la bndiction. Christopher Ricks Beckett's Dying Words. The Clarendon Lectures 1990[traduction libre] 37As so often - Ce nest pas le savoir qui nous fait dfaut, mais le courage de comprendre ce que nous savons et de tirer des conclusions.Sven LindqvistExterminate all the Brutes, 1992 [traduction libre]382In 2012, an New York Times op ed article by Bill Keller described the death of his father-in-law in a hospital in the east of England it was entitled How to Die

This is an excerpt - Le mdecin lui dit que lopration navait pas russi. Il ny avait plus rien faire. Je vais donc mourir? demanda le patient. Le mdecin hsita. Oui, dit-il enfin. Tu vas mourir, papa, affirma sa fille, ma femme. Bon, conclut le patient, finies les folies alors.De lautre ct, tu pourras en faire des tas, lui promit sa fille. Le patient acquiesa en riant. Il mourut six jours plus tard, quelques mois avant la date de son 80eanniversaire. Bill KellerHow to Die. New York Times, October 8, 2012, page A23[traduction libre] Later we learn - 39Durant les six derniers jours o vcut Anthony Gilbey, il est pass plusieurs fois de ltat dinconscience celui dveil, au rythme des injections de morphine. Ni les tubes ni le va-et-vient du personnel mdical ne lont gn pendant quil se replongeait dans ses souvenirs, rparait ses torts, changeait avec sa famille des blagues et des tmoignages daffection. Il a reu les sacrements catholiques et russi avaler lhostie consacre qui fut vraisemblablement son dernier repas. Par la suite, il sombra dans le coma. Il mourut doucement, aim et conscient de ltre, dans la dignit et la srnit. Jai combattu la mort pendant si longtemps, a-t-il confi ma femme peu avant son dcs, que cest un grand soulagement de pouvoir rendre les armes. Puissions-nous tous mourir aussi paisiblement. Bill KellerHow to Die. New York Times, October 8, 2012, page A23[traduction libre] The key to a good death was turned with this interchange - 40... Il ny avait plus rien faire. Je vais donc mourir? demanda le patient. Le mdecin hsita. Oui, dit-il enfin....Bill KellerHow to Die. New York Times, October 8, 2012, page A23[traduction libre] The doctor hesitated but had the courage to understand what he knew and to be honest with his patient - 41Il ny a plus rien ...que lon puisse faire pour vousque lon puisse faire pour vous empcher de mourirThese are the pivotal statements and of course the second option is always preferable to the first because there is always something we can do even if it is only to sit for a moment and hold a hand and - 42Savoir et se taire.Voil qui mne loubli.Ce qui est dit gagne en force.Ce qui est tu est vou la non-existence. Miosz C. Reading the Japanese Poet Issa (1762-1826) (1978) In New and Collected Poems 1931-2001.[traduction libre] 43If we as doctors know and dont speak, the reality and imminence of death tends to non-existence and patients and relatives have no opportunity to prepare themselves. As the writer and surgeon Atul Gawande puts it - comment tenir compte des ides et proccupations des mourants, lorsquil est presque impossible de dterminer qui est mourant, dun point de vue mdical?Atul GawandeLetting Go. New Yorker, 27 July 2010. [traduction libre]

44American physician and bio-ethicist Leon Kass writes - Comment rconcilier ces deux philosophies de vie: la vision de la mdecine, qui cherche prserver la vie mme en rodant sa qualit, et celle dune existence ordinaire, la fois fragile et source dpanouissement? Voil sans doute le dilemme thique le plus profond et le plus subtil que nous ayons rsoudre. Leon R KassCancer and mortality. In Dresser R (ed) MalignantOxford University Press, 2012 [traduction libre]

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46Medicine hasnt learned when or how to stop. We seem to have completely forgotten that death is not necessarily a medical failure and lost sight of the extent to which the care of the dying is a core task of medicine.

The 2012 World Health Organisation Global Health Expenditure Atlas reports that the OECD countries consume more than 80% of the worlds healthcare resources but experience less than 10% of the worlds disability adjusted life years. This must be unsustainable in terms of both global justice and the worlds capacity. The problem is that where the OECD countries lead, the rest of the world tends to try and follow. Or is pushed to follow.47appt du gainpeurAt every level this is a story of unsustainable greed the greed of those living in the richer countries of the world for ever greater longevity and most particularly the greed that drives and sustains the commercial imperatives of the pharmaceutical and medical technology industries. Yet the flip side of greed is fear fear that we or someone we love will be deprived of effective treatment because of issues of price or access to care. But neither greed nor fear can really help us. The only solutions to these profound existential challenges that have beset humanity since the beginning of time are to be found in courage and endurance and acceptance of the limits of life. They are to be found in thinking differently and more deeply.

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This is the great American writer Saul Bellow and here is a man always acutely aware of humanitys profoundest existential challenges. A couple of months ago I read 49

Mr Sammlers Planet. In it, Bellow writes about - 50Voyant la crature humaine rclamer davantage lorsque la somme des connaissances humaines noffrent pas dautre rponse.Saul BellowMr Sammlers Planet, 1970 [traduction libre]51This applies to both patients and their doctors everyone seems to want to demand more that the facts will yield. He goes on:

Le jeu en vaut peine la chandelle. Il est parfois plus sage et honorable de renoncer que de saccrocher tout prix. Il devient honteux de saccrocher au-del dun certain point. Ne pas tirer indment le fil de la vie. Faire le choix le plus noble. Ainsi pensait Aristote.Saul BellowMr Sammlers Planet, 1970 [traduction libre]52Not to be forever pushing the law of diminishing returns. And finally Bellow asks:Devons-nous toujours intervenir, mme au prix de souffrances? Insister jusqu lpuisement? Peut-tre.Saul BellowMr Sammlers Planet, 1970 [traduction libre]53.Effet nuisible sur les personnes;Sous-traitement;Menace pour les soins de sant universels; Marginalisation des causes socioconomiques dun mauvais tat de sant.Overdiagnosis and overtreatment have at least four serious implications. The first is the extent of harm to individuals caused by being labelled as being at risk or as having a disease based entirely on numbers or other aberrant investigations and the unnecessary fear that this can engender, which in itself can undermine health and well-being. The second involves the direct relationship between overtreatment and undertreatment, because whenever a diagnosis is broadened, attention and resources are inevitably redirected and shifted away from those most severely affected. The third concerns the potential of overdiagnosis and overtreatment to render healthcare systems based on social solidarity unviable because of the escalating costs involved. The fourth is the way in which biotechnical activity marginalises and obscures the socioeconomic causes of ill-health.

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So let me end with the great sociologist Zygmunt Bauman - 55tre responsable ne se borne pas suivre les rgles; pour tre responsable, nous devons souvent faire fi des rgles ou agir dune faon qui leur est contraire. Seul ce genre de responsabilit peut construire un citoyen sur qui pourra sriger une collectivit humaine suffisamment inventive et gnreuse pour relever les dfis daujourdhui. Zygmunt BaumanAlone Again: Ethics After Uncertainty, 1994 [traduction libre]56Whenever I see the sort of guidelines that are, right now, driving overdiagnosis and overtreatment, I think of this thank you