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Laurence Klotz (ed.)Active Surveillance for Localized Prostate CancerCurrent Clinical Urologyhttps://doi.org/10.1007/978-3-319-62710-6_33. The Role of Fear in Overdiagnosis and Overtreatment
(1)
Royal College of General Practitioners, London, UK
Keywords
FearRiskWishful thinkingVested interestProfitOverdiagnosisOvertreatmentA Tintinnabulation of Fear
In about 1848, while writing his famous poem The Bells, Edgar Allan Poe invented the magnificent word ‘tintinnabulation’ to capture the sound of a ringing bell that lingers after the bell has been struck to mix with the sounds of succeeding bells. This chapter will argue that we now have a tintinnabulation of fear that is driving overdiagnosis and overtreatment, each fear reinforcing and interacting with the next.
There are some very dangerous synergies and they are jeopardising the great projects of medical science and medical care. Firstly there are the distinct yet overlapping fears of patients and doctors, of the bureaucrats and politicians who control the healthcare system, and of society and the culture that supports it. And secondly, there are the profits, the enormous amount of money that is made from inflating those fears, much of which is supported by good people trying to stop people dying of horrible diseases but who succumb to a dangerous degree of wishful thinking . This exists alongside and so abets the much less honourable operation of vested interest within medicine and particularly within the biotechnical and pharmaceutical industries.
Tragically, fear works to the advantage of the medical-industrial complex and, as a result, is fanned in the interests of corporate profit. The systematic medicalisation of ordinary human distress has turned into an epidemic of disease mongering, which actively inflates fear and plays on the resulting insecurity deliberately for financial gain. Fear also sells newspapers, and so many journalists, and almost all editors, play their parts willingly. Benign symptoms are portrayed as serious disease, as in irritable bowel syndrome ; personal or social problems are recast as medical ones, as in much mild depression; and risks are conceptualised as diseases, as in reduced bone density or mildly raised blood pressure.
Fear increases the consumption of medical care which drives profits, and medical care itself creates more fear which is deliberately inflated by those who stand to make more profits, and so the vicious cycle rolls on.
Yet, as the great Franklin D. Roosevelt famously declared in his inauguration address in March 1933 in the depths of the Great Depression:
The Only Thing We Have to Fear Is Fear Itself
Because fear does dreadful things to people: it blights lives, it destroys health, and it drives people to make decisions and choices that are never likely to make things better.
The Fears of Patients
In the modern secular world, symptoms of illness have become almost the only acceptable means of expressing distress and are much more commonly caused by unhappiness than by anything that medical science would recognise as disease. The attrition of belief has left little scope for finding meaning in misery, and to an ever-greater extent, medicine has expanded to fill the gap. Yet, any symptom, whatever its cause, carries a burden of fear.
Everyone is afraid of serious disease and its capacity to subvert and destroy hopes and lives, and so fear lurks, mostly unexpressed, within almost all symptoms, however, apparently trivial. The resulting paradox is that while people in the affluent world are living lives that are longer and healthier than ever before, they have become more and more fearful and worried about their health. Anxiety taints both health and life and prevents people from enjoying and using the health they have.
Patients have been made ever more aware of the pervasive nature of sinister symptoms and are constantly exhorted to be vigilant and to catch things early. Different patients may also have specific fears related to their particular symptoms, and these are sometimes exacerbated by the detail of their particular family history. And patients are also afraid that their doctors will not understand what they try to describe and that an important diagnosis will be missed or made too late through laziness , incompetence or just bad luck.
The Fears of Doctors
Doctors and other healthcare professionals share their patients’ existential fears of disease and dying: they have no immunity. And doctors are also constantly afraid of making a mistake and of missing the serious diagnosis that will change a patient’s life. They want, above all, not to cause harm. They are afraid of being publicly pilloried in the media. They are afraid of being subject to a serious complaint, and when things do go wrong, it is difficult to remember that the doctor will always carry a burden of guilt, feeling that they should have been able to do more – but not understanding that a feeling of responsibility is not the same as actually being responsible.
Struggling with this burden of fears, doctors, and young doctors in particular, learn to be afraid of the uncertainty that is intrinsic to medicine and indeed to any endeavour that takes general truths derived from large numbers of people and try to apply them to a succession of unique individuals. These doctors try harder and harder to be safe by ordering more tests. As a result, they find things that are nothing to do with the patient’s illness and which would never cause harm if left alone. This drives overdiagnosis , too much medicine, more fear and greater profits.
The Fears of the System
The healthcare system , in the guise of its bureaucrats and politicians, is also afraid of uncertainty because uncertainty implies the necessity of professional judgement, and they distrust the innate unpredictability of this. Healthcare systems and public health are grounded in a utilitarian tradition, and as the economist Amartya Sen puts it in his magnificent book, The Idea of Justice :
The utilitarian tradition, which works toward beating every valuable thing down to some kind of allegedly homogenous magnitude of ‘utility’, has contributed most to this sense of security in ‘counting’ exactly one thing (‘is there more here or less?’), and has also helped to generate the suspicion of the tractability of ‘judging’ combinations of many distinct good things (‘is this combination more valuable or less?’). And yet any serious problem of social judgement can hardly escape accommodating pluralities of values. [1]
Judgement in medicine has similarly tried to seek security in numbers and has too often forgotten the necessity of accommodating pluralities of values. Yet it is fear of uncertainty and of the necessity of judgement within the healthcare system that drives the contemporary obsession with counting and the ever-increasing enthusiasm for regulation and surveillance – which in turn exacerbates the fears of doctors. But as the ancient Greeks were very aware, one cannot control probability:
It is a part of probability that many improbable things will happen. [2]
The Fears of Society
So to the fears embedded in contemporary societies and cultures that prize youth, beauty and the perfect human body. The enduring universals of disease and death are an anathema. There is no place or space for the realities of death and dying or for the lonely realities of living with long-term life-changing disease or disability. Society is permeated by a protective projection of them, the sick, and us, the well.
The wishful thinking embodied in an avalanche of guidelines and protocols for both doctors and patients is used to make the chaotic and uncertain seem safe and predictable. We are led to believe that the straightjacket of an approved lifestyle combined with the highest standards of medical care will guarantee a long and happy life. Yet the unpredictable remains a daily occurrence: the young and fit still die, and the old and dissolute keep going. Health is not something that can simply be made or produced. Different people with what is apparently the same condition and in similar circumstances react differently to the same standardised treatment. All our explanations remain partial and no one is necessarily to blame.
Quackery has traded on fear for generations. Now the pharmaceutical industry prostitutes medicine for the same end. The bizarre hope of postponing death indefinitely has been suggested and assiduously promoted by those who hope to make a profit from its creation. Decades ago, philosopher and priest Ivan Illich predicted where this would lead:
The more time, toil and sacrifice spent by a population in producing medicine as a commodity, the larger will be the by product, namely the fallacy that society has a supply of health locked away which can be mined and marketed. [3]
The market imperative derives from the fact that only a minority of most populations is acutely ill at any one time, whereas the majority is healthy. The healthy are however susceptible to persuasion that it is necessary for them to optimise their prognosis by undergoing screening and/or by taking preventive medication. In affluent countries, because there is now more money to be made from selling so-called ‘healthcare’ interventions for the healthy minority than for the sick majority, there is more pharmaceutical research in pursuit of preventive treatments than for the treatment of those who are already sick [4].
As a direct result, society spends an ever-greater amount on preventive technologies, leaving less available to treat those who are actually sick. In so doing, we shift resources from the poor and the sick to the rich and the well. This is clearly good for the medical technology and pharmaceutical industries but very bad for those funding the healthcare system, particularly as preventive technologies are much more likely to prove futile and to be overtaken by other disasters or pathologies. Overtreatment and undertreatment have become two sides of the same profit-driven coin.
Flipside Fears
This begins to hint at other, more hidden fears which are almost the flipsides of the ones already outlined. And they too afflict patients, doctors, the system and society. These flipside fears are the ones whose recognition and exploration might give us some hope of resisting the vicious cycle of fear and profit.
Flipside Fears of Patients
The flipside fears of patients include a question asked by George Eliot in her 1876 novel Daniel Deronda:
– but how to make sure that snatching from death was rescue? [5]
In a 2010 article in the New York Times, writer Katy Butler describes the ruination of her elderly parents’ lives by the insertion of an ill-considered pacemaker:
I watched them lose control of their lives to a set of perverse financial incentives — for cardiologists, hospitals and especially the manufacturers of advanced medical devices — skewed to promote maximum treatment. At a point hard to precisely define, they stopped being beneficiaries of the war on sudden death and became its victims. [6]
At the age of 79, her father was suddenly severely disabled by a stroke which robbed him of most of his language, his mobility and his ability to care for himself. A year later he suffered a strangulated inguinal hernia, and the hospital refused to operate on him unless his wife agreed to have a pacemaker inserted because he had long-standing bradycardia and ‘might die during or shortly after the operation’. He had previously declined such a pacemaker when he was competent to do so, and no one told his family about the option of temporary pacing. The pacemaker kept him alive for 6 more terrible years of worsening dementia – exemplifying bioethicist Dan Callahan’s description of the Difficult Child of Medical Progress:
– the 1 percent of patients who consume some 21 percent of health care costs, usually succumbing gradually from multi-organ failure, illustrate the progress problem. Fifty years ago they would have died faster and, in many cases, with less suffering. We have traded off shorter lives and faster deaths for just the opposite, longer lives and slower death. [7]Stay updated, free articles. Join our Telegram channel
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