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The missing person: The outcome of the rule-based totalitarianism of too much contemporary healthcare
Accepted Manuscript Title: The Missing Person: the outcome of the rule-based totalitarianism of too much contemporary healthcare Author: Iona Heath PII: DOI: Reference:
S0738-3991(17)30210-0 http://dx.doi.org/doi:10.1016/j.pec.2017.03.030 PEC 5633
To appear in:
Patient Education and Counseling
Received date: Revised date: Accepted date:
6-2-2017 20-3-2017 29-3-2017
Please cite this article as: Heath I, The Missing Person: the outcome of the rule-based totalitarianism of too much contemporary healthcare, Patient Education and Counseling (2017), http://dx.doi.org/10.1016/j.pec.2017.03.030 This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
The Missing Person: the outcome of the rule-based totalitarianism of too much contemporary healthcare
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Iona Heath
Past president
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Royal College of General
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Practitioners
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London, UK
Abstract
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Objectives: Medicine has an obsession with scientific progress and a misplaced belief in the perfectibility of the human body and mind and, as a result, there seems never to be time for the necessary backward glance. If we in healthcare are to learn any of the lessons of history, it seems important that we pay attention to those who have suffered at the sharp end of historical events. Methods and Results: This paper invokes thinkers and writers who lived lives scarred by totalitarian politics. Their testimony emphasises the importance of paying attention to the particularity of individual experience and demonstrates the importance of story, listening, seeing, imagination, and attention Conclusion: If we are to resist the secular totalitarianism of contemporary healthcare and reinstate the missing person at the centre of what we do, we as healthcare professionals must find the courage to disregard the rules. Practice implications: In every consultation it is important to be aware of the wider historical, political and social context that may direct and constrain the choices available to both patients and professionals.
I am looking at a black and white photograph which shows three rows of children, each lying outside under a blanket on identical camp beds. Page 1 of 16
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The children are suffering from tuberculosis and the photograph was taken at an Open Air School on Clapham Common in London on a cold, wet and misty winter day in 1932. I find the photograph disturbing because it seems to me to express a false certainty about the benefits of a particular way of treating other people and it is perhaps no coincidence that it was taken in the 1930s when totalitarianism was on the rise across Europe. And it is also no coincidence that many of the sources that I am going to cite in this essay lived lives scarred by totalitarian politics. If we in healthcare are to learn any of the lessons of history, it seems important that we pay attention to those who have suffered at the sharp end of historical events.
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The political philosopher Karl Popper was born in Austria in 1902, of Jewish heritage, although he was baptised a Lutheran. Fearing the rise of Nazism, he left Austria before the 1938 Anschluss, going first to Christchurch in New Zealand and then to London. In 1945, Popper published The Open Society and Its Enemies which is his response to the rise of totalitarian ism and the perhaps his most famous book1. He argued that there is a danger of totalitarianism whenever an abstract concept is allowed to trump the needs of actual living persons. He concluded that a central tenet of all totalitarian systems is the view that some collective social entity (for example, a city, a state, society, a nation, or a race) has needs that are prior and superior to the needs of actual living persons. Popper described two contrasting approaches to social reform. Utopian engineers are motivated by a vision of what a perfect society would look like and they seek to achieve this by whatever means available. It becomes a solution imposed by its creators and although intentions are often admirable, they are pervaded by a false certainty and the all-toocommon conviction of knowing what is good for other people and knowing how other people should live their lives. In contrast, Popper favoured piecemeal engineering which concentrates on the most pressing existing social problems and proceeds incrementally. According to Popper, utopian engineering aims at a perfect state and therefore requires centralized control which lapses all too easily into dictatorship. He summarised his position in one memorable sentence: The attempt to make heaven on earth invariably produces hell.
All experience tells us that change always produces unintended as well as intended consequences. With piecemeal engineering it seems easier to identify and mitigate the unintended consequences. Page 2 of 16
George Katkov, Popper’s contemporary and fellow philosopher and similarly a political refugee to Britain, invoked the blithe calculus of the utilitarianism of Jeremy Bentham and John Stuart Mill: It is the greatest happiness of the greatest number that is the measure of right and wrong.2
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Katkov was born in Moscow in 1903, lived through the Russian Revolution, but was living in Prague by 1929 where he got his PhD and escaped to Britain days before the outbreak of the Second World War. In 1951, by then living in England, he wrote this about Dostoevsky:
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In their zealous promotion of this greatest happiness, western social reformers - when calculating the greatest happiness of society - had treated the destinies of individuals as interchangeable units. The destinies and suffering of the few, the useless, the weak, the humble, and indeed the criminal ... were implicitly disregarded. Dostoevsky’s work could indeed be described as a continuous attempt to render plausible in all its implications a very simple idea: the harm done to the humblest and least significant human being can never in any circumstances be justified by any advantage derived from it by others .... 3
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Here we begin to touch not only on medicine and healthcare, but also on the power of literature. Healthcare professionals become very familiar with the destinies and suffering of the weak and the humble, and with the extent to which their needs are so often marginalised and neglected within a streamlined and industrialised healthcare system. The great Polish poet Zbigniew Herbert endured the Soviet dictatorship and in 1974, he published a poem called Damastes (also known as Procrustes) Speaks . It includes these lines: I invented a bed with the measurements of a perfect man I compared the travellers I caught with this bed it was hard to avoid - I admit - stretching limbs cutting legs the patients died but the more there were who perished the more I was certain my research was right the goal was noble progress requires victims 4
By describing the victims as patients, he clearly identifies the brutal utopian reformer Procrustes as a doctor, which is profoundly disturbing. The poem continues: my head was cut off by Theseus the murderer of the innocent Minotaur the one who used a woman’s ball of yarn to escape from the labyrinth Page 3 of 16
a clever one without principles or vision of the future
And the poem ends with these lines: I have a well-grounded hope that others will continue my labour and bring the task so wonderfully begun to its end
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Sadly, even tragically, that is exactly what medicine seems to have gone on to do. The world of guidelines and targets and payment by results is in the process of bringing the task so wonderfully begun to its end. It is, of course, essential to remain committed to the integrity and usefulness of medical science which has achieved enormous success through the application of general rules to individuals. Yet these undoubted achievements, as the poem suggests, have come at the price of annihilating and trivialising individual difference alongside the fundamental importance of the subjective experience of illness.
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I fear that Utopianism is alive and well within medicine and its hallmarks are a vision of the perfect human body and the perfect human life, and a conviction that we know how other people should lead their lives. We claim to know with frightening certainty what health is and how it is achieved.
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The political theorist Herbert Marcuse was born into a Jewish family in Berlin in 1898. He moved into exile in the United States in 1934 when his academic position became untenable under the Third Reich. He became a US citizen in 1940. In his book One Dimensional Man, published in 1964, Marcuse wrote: ‘Totalitarian’ is not only a terroristic political coordination of society, but also a non-terroristic economic-technical coordination which operates through the manipulation of needs by vested interests.5
This seems to be what large tracts of our healthcare systems have become: a non-terroristic economic-technical coordination which operates through the manipulation of needs by vested interests. The vested financial interests of the medical industrial complex drive the manipulation of need, the rules and the quality standards to which we are subjected, and the relentless widening of diagnostic categories that culminates in overdiagnosis and overtreatment. We have allowed tests to displace listening, number to displace description, and technology to displace touch.
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Reviewing George Orwell’s 1984 in 1949, the wonderful chain-smoking American critic Lionel Trilling wrote:
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He is saying, indeed, something no less comprehensive than this: that Russia, with its idealistic social revolution now developed into a police state, is but the image of the impending future and that the ultimate threat to human freedom may well come from a similar and even more massive development of the social idealism of our democratic culture.6
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Arguably, the current ascendancy of ever more medical technology is just such a manifestation of social idealism. War is peace; ignorance is strength; freedom is slavery. And now we have the latest example of Orwellian doublespeak: disease is health. Trilling continues:
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The essential point of Nineteen Eighty-Four is just this, the danger of the ultimate and absolute power which the mind can develop when it frees itself from conditions, from the bondage of things and history.
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The sorts of measurement which underpin the imperatives of contemporary medicine – blood pressure, serum cholesterol, bone density, PHQ9 depression score, body mass index, estimated glomerular filtration rate – just to mention a few - are all held to be universally applicable whatever the circumstance of the individual life to which they are applied. They are in Trilling’s words ‘freed from conditions’ and therefore dangerous. People become reduced to numbers and the person disappears: the person is missing. And when the person is missing medicine too easily becomes: … a formulaic, box-ticking, symptom-focussed, response in which the totality of the patient's being is unacknowledged, where the unity of the individual is fragmented into discrete non-interacting systems, and where an ‘answer’ emerges from a sterile algorithm.7
Writing about the development and use of psychological tests, TorJohan Ekeland, Norwegian professor of psychology, describes such measurements as rendering: - individuals into knowledge as objects of a hierarchical and normative gaze. The individuality is no longer unique and beyond knowledge, but can be known, mapped, calibrated, evaluated, quantified, predicted and managed. They become techniques for the disciplining of human difference – 8 Page 5 of 16
Biological variation has been appropriated to the causes of commercial profit and of lifestyle and political conformity. Physicians may not be driving this process but they are certainly colluding.
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Patients are reduced to interchangeable units of healthcare need and, simultaneously and just as importantly, healthcare professionals are reduced to interchangeable units of healthcare provision. Our perception and understanding of Popper’s ‘actual living persons’ goes missing.
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Abraham Verghese, Professor for the Theory and Practice of Medicine at Stanford, was born in Ethiopia of Indian parents but had to leave Ethiopia in 1974 during his third year at medical school with the advent of the military government and extreme political instability.
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He seems very aware of the missing person in contemporary medicine.
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People will say, “He or she never listened to me.” “He or she never laid a hand on me.” “He or she had one foot in the door, one foot out of the door.” It is a failure of recognition of their being, and a failure of making use of our being, making use of our sense of self as physicians, as caregivers.9
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We urgently need to rediscover Immanuel Kant and his categorical imperative: Act in such a way that you always treat humanity, whether in your own person or in the person of any other, never simply as a means, but always at the same time as an end.10
If we, as healthcare professionals, are to find ways to resist the incipient rules-based totalitarianism of contemporary healthcare, the imperative is that we treat our patients – always at the same time as an end – whatever else we seek to achieve. And also that we treat ourselves – ourselves as doctors and other professionals - as an end and do not allow ourselves to be treated simply as a means. My contention is that contemporary healthcare systems have a destructive tendency to treat both patients and professionals as means to some other greater purpose - and neglect, at the same time, to treat them as ends in themselves. The greater purpose might be something very worthy: a cure, or a longer life or something rather vaguer like “the public health” but, however worthy the end, turning humanity into simply the means to
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achieve it, is to undermine what it is to be human in a very fundamental way.
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For me, this holds even if those who are used as the means stand to benefit directly because, when we do this, we do exactly what Popper described as being a hallmark of totalitarianism, we elevate a collective social entity, such as public health or even health equity, above the needs of actual living persons. The trends are towards certainty and control. Certainty pretends that there are always right answers and this illusion becomes the basis for control and coercion.
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The theologian Paul Tillich was born in Germany but when Hitler came to power in 1933, he was dismissed from his post as Professor of Theology at the University of Frankfurt and subsequently at the age of 47 moved his family to America. Tillich echoes Kant and describes:
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- the unconditional imperative to acknowledge every person as a person. If we ask for the contents given by this absolute, we find, first, something negative - the command not to treat a person as a thing. This seems little, but it is much. It is the core of the principle of justice.11
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Within every consultation both professional and patient oscillate between perceiving the human body as an object and as a subject. When the body is perceived as an object, the gaze of biomedical science sees only what the particular patient has in common with other patients. When the body is perceived as a subject, we see what is unique about this person: their life context, its story, and the meanings that adhere to both. The perspective is dialogical and intersubjective involving two unique subjects: the patient and the professional. Sadly medicine and medical research have had a strong bias towards seeing the body as an object and has tended to marginalise the importance of subjective experience. The result is the missing person. The British-American philosopher Stephen Toulmin warned about the need to: - acknowledge and respect the essential differences between scientific and medical knowledge - notably, the physician's complex but indispensable fusion of the theoretical and the practical, the general and the particular, the universal and the existential – 12
And he emphasised the importance of making ... Page 7 of 16
- it clear just how far the fusion of medicine with biological science can afford to go, if it is not to destroy the essential character of medical practice and understanding.
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My fear is that we are teetering on this brink. Doctors and other healthcare professionals are not biomedical scientists. They have a different responsibility which is to attempt to relieve human distress and suffering and, to this end, to apply general scientific discoveries, derived from the study of populations, to a series of unique individuals. The science is usually, but not exclusively, biological and yet each individual has a particular biography that affects their personal biology and their experience of health, illness and disease, and the nature of their suffering.
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To rediscover the missing person we need to pay real attention to story, listening, seeing and imagination. Story
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All healthcare begins with a story told by a patient. The British writer, Caryl Phillips, born in St Kitts in the Caribbean, understands the elemental nature of human stories:
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The urge to tell a story is the oldest of human impulses, for it clarifies and orders the relationship between the private and the public, our inner and outer worlds, and it records the dissonance between these two spheres of existence.13
And this seems particularly relevant when we talk about the stories told by patients and by healthcare professionals because stories explore the gap and the dissonance between different truths and different meanings. They legitimate different perspectives and different answers. Richard Holmes, the biographer of Shelley and Coleridge, explains: … the lives of great artists and poets and writers are not, after all, so extraordinary by comparison with everyone else.14
He continues – Once known in any detail and any scope, every life is something extraordinary, full of particular drama and tension and surprise, often containing unimagined degrees of suffering or heroism, and invariably touching extreme moments of triumph and despair, though frequently unexpressed. The
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difference lies in the extent to which one is eventually recorded, and the other is eventually forgotten.
Every healthcare professional, who has had the privilege of listening to patients’ stories, knows this to be true.
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American writer Edmund White adds that stories have as much to do with the future as with the past:
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[In] the stories of their lives, they’re not just reporting the past but also shaping the future, forging an identity as much as revealing it.15
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And again this is pertinent to the stories that patients tell their doctors and other healthcare professionals
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The American philosopher Martha Nussbaum describes the commitment of the literary story, the novel:
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- to the separateness of persons and to the irreducibility of quality to quantity; its sense that what happens to individuals in the world has enormous importance; its commitment to describe the events of a life not from an external perspective of detachment, as the doings and movings of ants or machine parts, but from within, as invested with the complex significances with which human beings invest their own lives.16
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And the novel’s commitment:
- to the moral relevance of following a life through all of its adventures in all of its concrete context.
These dimensions of commitment that we learn from great novels are exactly those that we need to bring to the task of listening to each other’s stories. At the same time the American author Ursula K Le Guin reminds us that: The exercise of imagination is dangerous to those who profit from the way things are because it has the power to show that the way things are is not permanent, not universal, not necessary. Having that real though limited power to put established institutions into question, imaginative literature has also the responsibility of power. The storyteller is the truthteller.17
This seems to further emphasise the role of story as a form of resistance to totalitarianism. No wonder dictators are so keen to ban imaginative literature. Page 9 of 16
Listening So much in healthcare depends on how well healthcare professionals listen to each patient's story. The 19th century English novelist and poet Dinah Craik describes:
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Oh, the comfort—the inexpressible comfort of feeling safe with a person—having neither to weigh thoughts nor measure words, but pouring them all right out, just as they are, chaff and grain together; certain that a faithful hand will take and sift them, keep what is worth keeping, and then with the breath of kindness blow the rest away.18
It seems to me that this is precisely how we want our patients to feel as we are listening to them.
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Arthur Kleinman, professor of both psychiatry and anthropology at Harvard, contrasts this with too much current health professional listening:
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- the priorities of the practitioner lead to selective attention to the patient’s account, so that some aspects are carefully listened for and heard (sometimes when they are not spoken), while other things that are said - and even repeated - are literally not heard.19
If we are not only to listen but also to hear our patients' stories, we need to be literate at many different levels. Medical literacy ensures that where the patient has a disease for which medicine offers effective treatment then the pattern of the patient’s symptoms will be recognised and appropriate action taken. This relies on a solid grounding in biomedical science and an ability to work things out from biological principles. Physical literacy makes use of the doctor’s subjective awareness of his or her own body, combined with his or her objective knowledge of the body as a biological specimen. This combination underpins the empathic interpretation of the patient’s symptoms which lies at the root of diagnosis.20 Emotional literacy allows the doctor to acknowledge and witness the patient’s suffering and pain, and to help in the struggle to find a way forward. Cultural literacy enriches the search for meaning with examples of the way others have made healing sense of the same sorts of hurt and pain. And finally, moral literacy because making professional judgments in the face of uncertainty requires and will always require moral courage. Page 10 of 16
Seeing In his book A Fortunate Man about the work of a country doctor in England, John Berger wrote:
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He does not believe in maintaining his imaginative distance: he must come close enough to recognise the patient fully.21
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Most of the works of the Soviet Russian writer Andrei Platonov were banned in his lifetime and his son was sent to the Gulag as a “spy” aged only 15. He was also one of the writers most admired by John Berger. In his novel Soul, Platonov writes: Only from a distance was it possible to loathe her, to deny or generally be indifferent to a human being.22
Imagination
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We need to be close to our patients, only from distance can the person be missing.
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In A Seventh Man, John Berger insists on the necessity of imagination:
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To try to understand the experience of another it is necessary to dismantle the world as seen from one’s own place within it, and to reassemble it as seen from his. For example, to understand a given choice another makes, one must face in imagination the lack of choices which may confront and deny him.23
This describes a skill and a capacity which is essential to the effective practice of medicine, and there is no place within it for the rules-based standardising approach that renders the actual living person missing. American William Carlos Williams, himself both a family doctor and a poet, acknowledged his patients’ struggle to give expression to the profound feelings evoked by the experience of illness. We begin to see that the underlying meaning of all they want to tell us and have always failed to communicate is the poem, the poem which their lives are being lived to realise.24
The patient is talking, the doctor is listening and imagining and the story will prove fundamentally important to both parties.
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Attention The philosopher Simone Weil writes repeatedly about the importance of moral concentration which she called attention: - no true effort of attention is ever wasted even though it may never have any visible result, either direct or indirect.25
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And in a world increasingly obsessed with measurement, recording, and faceless standardisation, this remains absolutely true.
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Those who are unhappy have no need for anything in this world but people capable of giving them their attention. The capacity to give one’s attention to a sufferer is a very rare and difficult thing; it is almost a miracle; it is a miracle. Nearly all those who think they have this capacity do not possess it. Warmth of heart, impulsiveness, pity are not enough.26
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How do we respond to this challenge for each of our patients - and particularly for those who are most vulnerable and most damaged? We can never do it by allowing ourselves to become standardised and interchangeable , by becoming missing people ourselves.
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The Scottish poet Kathleen Jamie thinks, like Simone Weil, that the needed commitment and concentration of listening and noticing come close to the idea of prayer: Isn’t that a kind of prayer? The care and maintenance of the web of our noticing, the paying heed.27
And when she describes her experience of bird-watching – it sounds so close to the kind of receptiveness that we need in healthcare This is what I want to learn: to notice, but not to analyse. To still the part of the brain that’s yammering, ‘My god, what’s that? A stork, a crane, an ibis? – don’t be silly, it’s just a weird heron.’ Sometimes we have to hush the frantic inner voice that says ‘Don’t be stupid,’ and learn again to look, to listen. You can do the organising and redrafting, the diagnosing and identifying later, but right now, just be open to it, see how it’s tilting nervously into the wind, try to see the colour, the unchancy shape - hold it in your head, bring it home intact.
Right now – do nothing – just be open to the patient – notice them and hold them in your head. Don’t start to analyse – to diagnose – to answer - too soon. Attention consists of suspending our thought, leaving it detached, empty and ready to be penetrated by the object. It Page 12 of 16
means holding in our minds, within reach of this thought, but on a lower level and not in contact with it, the diverse knowledge we have acquired which we are forced to make use of.28
This seems to me to be also about not applying simplistic and reductive labels to people too readily.
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The philosopher Iris Murdoch follows on from Simone Weil
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I have used the word ‘attention’, which I borrow from Simone Weil, to express the idea of a just and loving gaze directed upon an individual reality. I believe this to be the characteristic and proper mark of the active moral agent.29
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The task of attention goes on all the time and at apparently empty and everyday moments we are ‘looking’, making those little peering efforts of imagination which have such important cumulative results.
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I think every clinician will recognise “those little peering efforts of imagination” and how much they help
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Yet, this is all very difficult and perhaps increasingly difficult to sustain.
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This modern history of diagnosis is inextricably related to disease specificity, to the notion that diseases can and should be thought of as entities existing outside the unique manifestations of illness in particular men and women.30
This takes us straight back into the world of guidelines and EBM and P4P, all of which are disease, rather than person-focussed, and the reaction of discomfort among clinicians which managers and some nonclinical researchers sometimes find so hard to understand: the struggle to shoehorn the enormous diversity of human experience into the world of standardised protocols; the discounting of significant chunks of the patient’s narrative to fit the diagnostic criteria. Ignoring part of a patient’s story is not only dangerous, it also betrays a lack of interest. Simone Weil again: ‘You do not interest me.’ No man can say these words to another without committing a cruelty and offending against justice.31
Yet, we have so little time and are hemmed in by diktats, threats and incentives, both direct and perverse. Page 13 of 16
Weil describes her experience of factory work: None of the conditions under which she and the other employees worked allowed for the essential conditions she believed indispensable for dignity in labour. Among these prerequisites were the possibility for thought, for invention and for the exercise of judgement.32
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And yet now, even for doctors, these prerequisites are being eroded.
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In his book A Long Long Way, the Irish novelist Sebastian Barry describes the process in another context:
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But it was all in the manuals, and a sergeant-major must be faithful to such things, like an agnostic priest. And God knows, when reason and mercy had fled out of the world, there was nothing like a manual.33
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And sometimes we too feel that reason and mercy have fled out of our world, and certainly out of the worlds of our patients, and, of course, it is all too easy to take comfort in the manual – in the protocol – in the guideline – in the rule. Yet we must surely heed the warning of another great scholar whose life has been marked by totalitarianism. The Polish sociologist Zygmunt Bauman has lived in England since 1971 after being driven out of Poland by an anti-Semitic purge organized by the Soviet influenced ruling Communist Party. Bauman writes: To be responsible does not mean to follow the rules; it may often require us to disregard the rules or to act in a way the rules do not warrant. Only such responsibility makes the citizen into that basis on which can be built a human community resourceful and thoughtful enough to cope with the present challenges. 34
If we are to resist the secular totalitarianism of contemporary healthcare and reinstate the missing person at the centre of what we do, we as healthcare professionals must find the courage to disregard the rules.
1
Popper KR. The open society and its enemies. London: Routledge, 1945.
2
Bentham J. A fragment on government. London: T. Payne, 1776.
3
Katkov G. The spiritual message of Dostoevsky. The Listener, 1951, pp.1059-60.
4
Herbert Z. Damastes (Also Known As Procrustes) Speaks. In Report from the besieged city and other poems. Oxford: Oxford University Press, 1987, p.44.
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Marcuse H. One Dimensional Man: Studies in the Ideology of Advanced Industrial Society. London: Routledge & Kegan Paul, 1964, p5.
6
Trilling L. Orwell on the future. Review of Nineteen Eighty-Four, by George Orwell. New Yorker 25 (June 18, 1949): 78, 81-83.
7
Holmes J. The therapeutic imagination. Hove: Routledge, 2014.
8
Ekeland T-J. Epistemological errors and the return of the Jedi. Problems in mainstream psychology and implications for practice. Keynote speech at Bergen Symposium on Cultural and Critical Psychology. Exploring Psychological Perspectives and Their Practical Consequences, University of Bergen, June 1-2, 2004.
9
Verghese A. I Carry Your Heart. JAMA Cardiology 2016; 1(2): 213.
10
Kant I. Groundwork of the Metaphysic of Morals, 1785.
11
Tillich P. My search for absolutes. New York: Simon and Schuster, 1969.
12
Toulmin S. Knowledge and art in the practice of medicine: clinical judgment and historical reconstruction. In: Delkeskamp-Hayes C, Gardell Cutter MA (eds). Science, Technology, and the Art of Medicine. Dordrecht: Kluwer Academic Publishers, 1993.
13
Phillips C. A beacon in dark times. The Guardian Review Saturday 22 November 2003.
14
Holmes R. Footsteps: adventures of a romantic biographer. London: Hodder and Stoughton 1985.
15
White E. Foreword to The Faber Book of Gay Short Stories. London: Faber & Faber, 1991.
16
Nussbaum MC. Poetic Justice: the Literary Imagination and Public Life. Boston: Beacon Press, 2001.
18
19
20
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M
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Ac ce pt e
17
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5
Le Guin UK. The Wave in the Mind: Talks and Essays on the Writer, the Reader, and the Imagination. Boulder: Shambhala, 2004. Craik D. A Life for a Life. London: Hurst and Blackett, 1859.
Kleinman A. The illness narratives: suffering, healing and the human condition. New York: Basic Books, 1988.
Rudebeck CE. General practice and the dialogue of clinical practice: on symptoms, symptom presentations and bodily empathy. Scand J Prim Health Care Suppl 1/1992.
21
Berger J, Mohr J. A Fortunate Man. Harmondsworth: Allen Lane The Penguin Press, 1967.
22
Platonov A. Soul (1935-46). New York: New York Review Books Classics, 2007.
23
Berger J, Mohr J. A Seventh Man. Harmondsworth: Penguin Books Ltd, 1975.
24
Williams WC. The Doctor Stories (1951). New York: New Directions Books, 1984.
25
Weil S. Letter to Joë Bousquet, Marseille, May 12, 1942. In Miles S. (ed) Simone Weil: an anthology. London: Penguin, 2003.
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Weil S. Reflections on the right use of school studies, 1942. In Miles S. (ed) Simone Weil: an anthology. London: Penguin, 2003.
27
Jamie K. Findings. London: Sort of Books, 2005.
28
Weil S. Reflections on the right use of school studies (1942). In Miles S. (ed) Simone Weil: an anthology. London: Penguin, 2003.
29
Murdoch I. The Sovereignty of Good. London: Routledge & Kegan Paul, 1970.
30
Rosenberg CE. The Tyranny of Diagnosis: specific entities and individual experience. The Milbank Quarterly 2002; 80(2): 237-260.
31
Weil S. Human personality (1942-3). In Miles S. (ed) Simone Weil: an anthology. London: Penguin, 2003.
32
Weil S. The Iliad or The Poem of Force (1939-40). In Miles S. (ed) Simone Weil: an anthology. London: Penguin, 2003.
33
Barry S. A Long Long Way. London: Faber and Faber Ltd, 2005.
34
Bauman Z. Alone Again: Ethics After Uncertainty. London: Demos, 1994.
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S0738-3991(17)30210-0 http://dx.doi.org/doi:10.1016/j.pec.2017.03.030 PEC 5633
To appear in:
Patient Education and Counseling
Received date: Revised date: Accepted date:
6-2-2017 20-3-2017 29-3-2017
Please cite this article as: Heath I, The Missing Person: the outcome of the rule-based totalitarianism of too much contemporary healthcare, Patient Education and Counseling (2017), http://dx.doi.org/10.1016/j.pec.2017.03.030 This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
The Missing Person: the outcome of the rule-based totalitarianism of too much contemporary healthcare
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Iona Heath
Past president
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Royal College of General
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Practitioners
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London, UK
Abstract
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Objectives: Medicine has an obsession with scientific progress and a misplaced belief in the perfectibility of the human body and mind and, as a result, there seems never to be time for the necessary backward glance. If we in healthcare are to learn any of the lessons of history, it seems important that we pay attention to those who have suffered at the sharp end of historical events. Methods and Results: This paper invokes thinkers and writers who lived lives scarred by totalitarian politics. Their testimony emphasises the importance of paying attention to the particularity of individual experience and demonstrates the importance of story, listening, seeing, imagination, and attention Conclusion: If we are to resist the secular totalitarianism of contemporary healthcare and reinstate the missing person at the centre of what we do, we as healthcare professionals must find the courage to disregard the rules. Practice implications: In every consultation it is important to be aware of the wider historical, political and social context that may direct and constrain the choices available to both patients and professionals.
I am looking at a black and white photograph which shows three rows of children, each lying outside under a blanket on identical camp beds. Page 1 of 16
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The children are suffering from tuberculosis and the photograph was taken at an Open Air School on Clapham Common in London on a cold, wet and misty winter day in 1932. I find the photograph disturbing because it seems to me to express a false certainty about the benefits of a particular way of treating other people and it is perhaps no coincidence that it was taken in the 1930s when totalitarianism was on the rise across Europe. And it is also no coincidence that many of the sources that I am going to cite in this essay lived lives scarred by totalitarian politics. If we in healthcare are to learn any of the lessons of history, it seems important that we pay attention to those who have suffered at the sharp end of historical events.
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The political philosopher Karl Popper was born in Austria in 1902, of Jewish heritage, although he was baptised a Lutheran. Fearing the rise of Nazism, he left Austria before the 1938 Anschluss, going first to Christchurch in New Zealand and then to London. In 1945, Popper published The Open Society and Its Enemies which is his response to the rise of totalitarian ism and the perhaps his most famous book1. He argued that there is a danger of totalitarianism whenever an abstract concept is allowed to trump the needs of actual living persons. He concluded that a central tenet of all totalitarian systems is the view that some collective social entity (for example, a city, a state, society, a nation, or a race) has needs that are prior and superior to the needs of actual living persons. Popper described two contrasting approaches to social reform. Utopian engineers are motivated by a vision of what a perfect society would look like and they seek to achieve this by whatever means available. It becomes a solution imposed by its creators and although intentions are often admirable, they are pervaded by a false certainty and the all-toocommon conviction of knowing what is good for other people and knowing how other people should live their lives. In contrast, Popper favoured piecemeal engineering which concentrates on the most pressing existing social problems and proceeds incrementally. According to Popper, utopian engineering aims at a perfect state and therefore requires centralized control which lapses all too easily into dictatorship. He summarised his position in one memorable sentence: The attempt to make heaven on earth invariably produces hell.
All experience tells us that change always produces unintended as well as intended consequences. With piecemeal engineering it seems easier to identify and mitigate the unintended consequences. Page 2 of 16
George Katkov, Popper’s contemporary and fellow philosopher and similarly a political refugee to Britain, invoked the blithe calculus of the utilitarianism of Jeremy Bentham and John Stuart Mill: It is the greatest happiness of the greatest number that is the measure of right and wrong.2
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Katkov was born in Moscow in 1903, lived through the Russian Revolution, but was living in Prague by 1929 where he got his PhD and escaped to Britain days before the outbreak of the Second World War. In 1951, by then living in England, he wrote this about Dostoevsky:
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In their zealous promotion of this greatest happiness, western social reformers - when calculating the greatest happiness of society - had treated the destinies of individuals as interchangeable units. The destinies and suffering of the few, the useless, the weak, the humble, and indeed the criminal ... were implicitly disregarded. Dostoevsky’s work could indeed be described as a continuous attempt to render plausible in all its implications a very simple idea: the harm done to the humblest and least significant human being can never in any circumstances be justified by any advantage derived from it by others .... 3
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Here we begin to touch not only on medicine and healthcare, but also on the power of literature. Healthcare professionals become very familiar with the destinies and suffering of the weak and the humble, and with the extent to which their needs are so often marginalised and neglected within a streamlined and industrialised healthcare system. The great Polish poet Zbigniew Herbert endured the Soviet dictatorship and in 1974, he published a poem called Damastes (also known as Procrustes) Speaks . It includes these lines: I invented a bed with the measurements of a perfect man I compared the travellers I caught with this bed it was hard to avoid - I admit - stretching limbs cutting legs the patients died but the more there were who perished the more I was certain my research was right the goal was noble progress requires victims 4
By describing the victims as patients, he clearly identifies the brutal utopian reformer Procrustes as a doctor, which is profoundly disturbing. The poem continues: my head was cut off by Theseus the murderer of the innocent Minotaur the one who used a woman’s ball of yarn to escape from the labyrinth Page 3 of 16
a clever one without principles or vision of the future
And the poem ends with these lines: I have a well-grounded hope that others will continue my labour and bring the task so wonderfully begun to its end
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Sadly, even tragically, that is exactly what medicine seems to have gone on to do. The world of guidelines and targets and payment by results is in the process of bringing the task so wonderfully begun to its end. It is, of course, essential to remain committed to the integrity and usefulness of medical science which has achieved enormous success through the application of general rules to individuals. Yet these undoubted achievements, as the poem suggests, have come at the price of annihilating and trivialising individual difference alongside the fundamental importance of the subjective experience of illness.
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I fear that Utopianism is alive and well within medicine and its hallmarks are a vision of the perfect human body and the perfect human life, and a conviction that we know how other people should lead their lives. We claim to know with frightening certainty what health is and how it is achieved.
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The political theorist Herbert Marcuse was born into a Jewish family in Berlin in 1898. He moved into exile in the United States in 1934 when his academic position became untenable under the Third Reich. He became a US citizen in 1940. In his book One Dimensional Man, published in 1964, Marcuse wrote: ‘Totalitarian’ is not only a terroristic political coordination of society, but also a non-terroristic economic-technical coordination which operates through the manipulation of needs by vested interests.5
This seems to be what large tracts of our healthcare systems have become: a non-terroristic economic-technical coordination which operates through the manipulation of needs by vested interests. The vested financial interests of the medical industrial complex drive the manipulation of need, the rules and the quality standards to which we are subjected, and the relentless widening of diagnostic categories that culminates in overdiagnosis and overtreatment. We have allowed tests to displace listening, number to displace description, and technology to displace touch.
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Reviewing George Orwell’s 1984 in 1949, the wonderful chain-smoking American critic Lionel Trilling wrote:
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He is saying, indeed, something no less comprehensive than this: that Russia, with its idealistic social revolution now developed into a police state, is but the image of the impending future and that the ultimate threat to human freedom may well come from a similar and even more massive development of the social idealism of our democratic culture.6
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Arguably, the current ascendancy of ever more medical technology is just such a manifestation of social idealism. War is peace; ignorance is strength; freedom is slavery. And now we have the latest example of Orwellian doublespeak: disease is health. Trilling continues:
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The essential point of Nineteen Eighty-Four is just this, the danger of the ultimate and absolute power which the mind can develop when it frees itself from conditions, from the bondage of things and history.
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The sorts of measurement which underpin the imperatives of contemporary medicine – blood pressure, serum cholesterol, bone density, PHQ9 depression score, body mass index, estimated glomerular filtration rate – just to mention a few - are all held to be universally applicable whatever the circumstance of the individual life to which they are applied. They are in Trilling’s words ‘freed from conditions’ and therefore dangerous. People become reduced to numbers and the person disappears: the person is missing. And when the person is missing medicine too easily becomes: … a formulaic, box-ticking, symptom-focussed, response in which the totality of the patient's being is unacknowledged, where the unity of the individual is fragmented into discrete non-interacting systems, and where an ‘answer’ emerges from a sterile algorithm.7
Writing about the development and use of psychological tests, TorJohan Ekeland, Norwegian professor of psychology, describes such measurements as rendering: - individuals into knowledge as objects of a hierarchical and normative gaze. The individuality is no longer unique and beyond knowledge, but can be known, mapped, calibrated, evaluated, quantified, predicted and managed. They become techniques for the disciplining of human difference – 8 Page 5 of 16
Biological variation has been appropriated to the causes of commercial profit and of lifestyle and political conformity. Physicians may not be driving this process but they are certainly colluding.
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Patients are reduced to interchangeable units of healthcare need and, simultaneously and just as importantly, healthcare professionals are reduced to interchangeable units of healthcare provision. Our perception and understanding of Popper’s ‘actual living persons’ goes missing.
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Abraham Verghese, Professor for the Theory and Practice of Medicine at Stanford, was born in Ethiopia of Indian parents but had to leave Ethiopia in 1974 during his third year at medical school with the advent of the military government and extreme political instability.
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He seems very aware of the missing person in contemporary medicine.
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People will say, “He or she never listened to me.” “He or she never laid a hand on me.” “He or she had one foot in the door, one foot out of the door.” It is a failure of recognition of their being, and a failure of making use of our being, making use of our sense of self as physicians, as caregivers.9
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We urgently need to rediscover Immanuel Kant and his categorical imperative: Act in such a way that you always treat humanity, whether in your own person or in the person of any other, never simply as a means, but always at the same time as an end.10
If we, as healthcare professionals, are to find ways to resist the incipient rules-based totalitarianism of contemporary healthcare, the imperative is that we treat our patients – always at the same time as an end – whatever else we seek to achieve. And also that we treat ourselves – ourselves as doctors and other professionals - as an end and do not allow ourselves to be treated simply as a means. My contention is that contemporary healthcare systems have a destructive tendency to treat both patients and professionals as means to some other greater purpose - and neglect, at the same time, to treat them as ends in themselves. The greater purpose might be something very worthy: a cure, or a longer life or something rather vaguer like “the public health” but, however worthy the end, turning humanity into simply the means to
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achieve it, is to undermine what it is to be human in a very fundamental way.
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For me, this holds even if those who are used as the means stand to benefit directly because, when we do this, we do exactly what Popper described as being a hallmark of totalitarianism, we elevate a collective social entity, such as public health or even health equity, above the needs of actual living persons. The trends are towards certainty and control. Certainty pretends that there are always right answers and this illusion becomes the basis for control and coercion.
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The theologian Paul Tillich was born in Germany but when Hitler came to power in 1933, he was dismissed from his post as Professor of Theology at the University of Frankfurt and subsequently at the age of 47 moved his family to America. Tillich echoes Kant and describes:
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- the unconditional imperative to acknowledge every person as a person. If we ask for the contents given by this absolute, we find, first, something negative - the command not to treat a person as a thing. This seems little, but it is much. It is the core of the principle of justice.11
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Within every consultation both professional and patient oscillate between perceiving the human body as an object and as a subject. When the body is perceived as an object, the gaze of biomedical science sees only what the particular patient has in common with other patients. When the body is perceived as a subject, we see what is unique about this person: their life context, its story, and the meanings that adhere to both. The perspective is dialogical and intersubjective involving two unique subjects: the patient and the professional. Sadly medicine and medical research have had a strong bias towards seeing the body as an object and has tended to marginalise the importance of subjective experience. The result is the missing person. The British-American philosopher Stephen Toulmin warned about the need to: - acknowledge and respect the essential differences between scientific and medical knowledge - notably, the physician's complex but indispensable fusion of the theoretical and the practical, the general and the particular, the universal and the existential – 12
And he emphasised the importance of making ... Page 7 of 16
- it clear just how far the fusion of medicine with biological science can afford to go, if it is not to destroy the essential character of medical practice and understanding.
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My fear is that we are teetering on this brink. Doctors and other healthcare professionals are not biomedical scientists. They have a different responsibility which is to attempt to relieve human distress and suffering and, to this end, to apply general scientific discoveries, derived from the study of populations, to a series of unique individuals. The science is usually, but not exclusively, biological and yet each individual has a particular biography that affects their personal biology and their experience of health, illness and disease, and the nature of their suffering.
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To rediscover the missing person we need to pay real attention to story, listening, seeing and imagination. Story
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All healthcare begins with a story told by a patient. The British writer, Caryl Phillips, born in St Kitts in the Caribbean, understands the elemental nature of human stories:
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The urge to tell a story is the oldest of human impulses, for it clarifies and orders the relationship between the private and the public, our inner and outer worlds, and it records the dissonance between these two spheres of existence.13
And this seems particularly relevant when we talk about the stories told by patients and by healthcare professionals because stories explore the gap and the dissonance between different truths and different meanings. They legitimate different perspectives and different answers. Richard Holmes, the biographer of Shelley and Coleridge, explains: … the lives of great artists and poets and writers are not, after all, so extraordinary by comparison with everyone else.14
He continues – Once known in any detail and any scope, every life is something extraordinary, full of particular drama and tension and surprise, often containing unimagined degrees of suffering or heroism, and invariably touching extreme moments of triumph and despair, though frequently unexpressed. The
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difference lies in the extent to which one is eventually recorded, and the other is eventually forgotten.
Every healthcare professional, who has had the privilege of listening to patients’ stories, knows this to be true.
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American writer Edmund White adds that stories have as much to do with the future as with the past:
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[In] the stories of their lives, they’re not just reporting the past but also shaping the future, forging an identity as much as revealing it.15
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And again this is pertinent to the stories that patients tell their doctors and other healthcare professionals
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The American philosopher Martha Nussbaum describes the commitment of the literary story, the novel:
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- to the separateness of persons and to the irreducibility of quality to quantity; its sense that what happens to individuals in the world has enormous importance; its commitment to describe the events of a life not from an external perspective of detachment, as the doings and movings of ants or machine parts, but from within, as invested with the complex significances with which human beings invest their own lives.16
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And the novel’s commitment:
- to the moral relevance of following a life through all of its adventures in all of its concrete context.
These dimensions of commitment that we learn from great novels are exactly those that we need to bring to the task of listening to each other’s stories. At the same time the American author Ursula K Le Guin reminds us that: The exercise of imagination is dangerous to those who profit from the way things are because it has the power to show that the way things are is not permanent, not universal, not necessary. Having that real though limited power to put established institutions into question, imaginative literature has also the responsibility of power. The storyteller is the truthteller.17
This seems to further emphasise the role of story as a form of resistance to totalitarianism. No wonder dictators are so keen to ban imaginative literature. Page 9 of 16
Listening So much in healthcare depends on how well healthcare professionals listen to each patient's story. The 19th century English novelist and poet Dinah Craik describes:
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Oh, the comfort—the inexpressible comfort of feeling safe with a person—having neither to weigh thoughts nor measure words, but pouring them all right out, just as they are, chaff and grain together; certain that a faithful hand will take and sift them, keep what is worth keeping, and then with the breath of kindness blow the rest away.18
It seems to me that this is precisely how we want our patients to feel as we are listening to them.
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Arthur Kleinman, professor of both psychiatry and anthropology at Harvard, contrasts this with too much current health professional listening:
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- the priorities of the practitioner lead to selective attention to the patient’s account, so that some aspects are carefully listened for and heard (sometimes when they are not spoken), while other things that are said - and even repeated - are literally not heard.19
If we are not only to listen but also to hear our patients' stories, we need to be literate at many different levels. Medical literacy ensures that where the patient has a disease for which medicine offers effective treatment then the pattern of the patient’s symptoms will be recognised and appropriate action taken. This relies on a solid grounding in biomedical science and an ability to work things out from biological principles. Physical literacy makes use of the doctor’s subjective awareness of his or her own body, combined with his or her objective knowledge of the body as a biological specimen. This combination underpins the empathic interpretation of the patient’s symptoms which lies at the root of diagnosis.20 Emotional literacy allows the doctor to acknowledge and witness the patient’s suffering and pain, and to help in the struggle to find a way forward. Cultural literacy enriches the search for meaning with examples of the way others have made healing sense of the same sorts of hurt and pain. And finally, moral literacy because making professional judgments in the face of uncertainty requires and will always require moral courage. Page 10 of 16
Seeing In his book A Fortunate Man about the work of a country doctor in England, John Berger wrote:
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He does not believe in maintaining his imaginative distance: he must come close enough to recognise the patient fully.21
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Most of the works of the Soviet Russian writer Andrei Platonov were banned in his lifetime and his son was sent to the Gulag as a “spy” aged only 15. He was also one of the writers most admired by John Berger. In his novel Soul, Platonov writes: Only from a distance was it possible to loathe her, to deny or generally be indifferent to a human being.22
Imagination
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We need to be close to our patients, only from distance can the person be missing.
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In A Seventh Man, John Berger insists on the necessity of imagination:
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To try to understand the experience of another it is necessary to dismantle the world as seen from one’s own place within it, and to reassemble it as seen from his. For example, to understand a given choice another makes, one must face in imagination the lack of choices which may confront and deny him.23
This describes a skill and a capacity which is essential to the effective practice of medicine, and there is no place within it for the rules-based standardising approach that renders the actual living person missing. American William Carlos Williams, himself both a family doctor and a poet, acknowledged his patients’ struggle to give expression to the profound feelings evoked by the experience of illness. We begin to see that the underlying meaning of all they want to tell us and have always failed to communicate is the poem, the poem which their lives are being lived to realise.24
The patient is talking, the doctor is listening and imagining and the story will prove fundamentally important to both parties.
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Attention The philosopher Simone Weil writes repeatedly about the importance of moral concentration which she called attention: - no true effort of attention is ever wasted even though it may never have any visible result, either direct or indirect.25
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And in a world increasingly obsessed with measurement, recording, and faceless standardisation, this remains absolutely true.
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Those who are unhappy have no need for anything in this world but people capable of giving them their attention. The capacity to give one’s attention to a sufferer is a very rare and difficult thing; it is almost a miracle; it is a miracle. Nearly all those who think they have this capacity do not possess it. Warmth of heart, impulsiveness, pity are not enough.26
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How do we respond to this challenge for each of our patients - and particularly for those who are most vulnerable and most damaged? We can never do it by allowing ourselves to become standardised and interchangeable , by becoming missing people ourselves.
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The Scottish poet Kathleen Jamie thinks, like Simone Weil, that the needed commitment and concentration of listening and noticing come close to the idea of prayer: Isn’t that a kind of prayer? The care and maintenance of the web of our noticing, the paying heed.27
And when she describes her experience of bird-watching – it sounds so close to the kind of receptiveness that we need in healthcare This is what I want to learn: to notice, but not to analyse. To still the part of the brain that’s yammering, ‘My god, what’s that? A stork, a crane, an ibis? – don’t be silly, it’s just a weird heron.’ Sometimes we have to hush the frantic inner voice that says ‘Don’t be stupid,’ and learn again to look, to listen. You can do the organising and redrafting, the diagnosing and identifying later, but right now, just be open to it, see how it’s tilting nervously into the wind, try to see the colour, the unchancy shape - hold it in your head, bring it home intact.
Right now – do nothing – just be open to the patient – notice them and hold them in your head. Don’t start to analyse – to diagnose – to answer - too soon. Attention consists of suspending our thought, leaving it detached, empty and ready to be penetrated by the object. It Page 12 of 16
means holding in our minds, within reach of this thought, but on a lower level and not in contact with it, the diverse knowledge we have acquired which we are forced to make use of.28
This seems to me to be also about not applying simplistic and reductive labels to people too readily.
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The philosopher Iris Murdoch follows on from Simone Weil
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I have used the word ‘attention’, which I borrow from Simone Weil, to express the idea of a just and loving gaze directed upon an individual reality. I believe this to be the characteristic and proper mark of the active moral agent.29
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The task of attention goes on all the time and at apparently empty and everyday moments we are ‘looking’, making those little peering efforts of imagination which have such important cumulative results.
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I think every clinician will recognise “those little peering efforts of imagination” and how much they help
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Yet, this is all very difficult and perhaps increasingly difficult to sustain.
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This modern history of diagnosis is inextricably related to disease specificity, to the notion that diseases can and should be thought of as entities existing outside the unique manifestations of illness in particular men and women.30
This takes us straight back into the world of guidelines and EBM and P4P, all of which are disease, rather than person-focussed, and the reaction of discomfort among clinicians which managers and some nonclinical researchers sometimes find so hard to understand: the struggle to shoehorn the enormous diversity of human experience into the world of standardised protocols; the discounting of significant chunks of the patient’s narrative to fit the diagnostic criteria. Ignoring part of a patient’s story is not only dangerous, it also betrays a lack of interest. Simone Weil again: ‘You do not interest me.’ No man can say these words to another without committing a cruelty and offending against justice.31
Yet, we have so little time and are hemmed in by diktats, threats and incentives, both direct and perverse. Page 13 of 16
Weil describes her experience of factory work: None of the conditions under which she and the other employees worked allowed for the essential conditions she believed indispensable for dignity in labour. Among these prerequisites were the possibility for thought, for invention and for the exercise of judgement.32
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And yet now, even for doctors, these prerequisites are being eroded.
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In his book A Long Long Way, the Irish novelist Sebastian Barry describes the process in another context:
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But it was all in the manuals, and a sergeant-major must be faithful to such things, like an agnostic priest. And God knows, when reason and mercy had fled out of the world, there was nothing like a manual.33
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And sometimes we too feel that reason and mercy have fled out of our world, and certainly out of the worlds of our patients, and, of course, it is all too easy to take comfort in the manual – in the protocol – in the guideline – in the rule. Yet we must surely heed the warning of another great scholar whose life has been marked by totalitarianism. The Polish sociologist Zygmunt Bauman has lived in England since 1971 after being driven out of Poland by an anti-Semitic purge organized by the Soviet influenced ruling Communist Party. Bauman writes: To be responsible does not mean to follow the rules; it may often require us to disregard the rules or to act in a way the rules do not warrant. Only such responsibility makes the citizen into that basis on which can be built a human community resourceful and thoughtful enough to cope with the present challenges. 34
If we are to resist the secular totalitarianism of contemporary healthcare and reinstate the missing person at the centre of what we do, we as healthcare professionals must find the courage to disregard the rules.
1
Popper KR. The open society and its enemies. London: Routledge, 1945.
2
Bentham J. A fragment on government. London: T. Payne, 1776.
3
Katkov G. The spiritual message of Dostoevsky. The Listener, 1951, pp.1059-60.
4
Herbert Z. Damastes (Also Known As Procrustes) Speaks. In Report from the besieged city and other poems. Oxford: Oxford University Press, 1987, p.44.
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Marcuse H. One Dimensional Man: Studies in the Ideology of Advanced Industrial Society. London: Routledge & Kegan Paul, 1964, p5.
6
Trilling L. Orwell on the future. Review of Nineteen Eighty-Four, by George Orwell. New Yorker 25 (June 18, 1949): 78, 81-83.
7
Holmes J. The therapeutic imagination. Hove: Routledge, 2014.
8
Ekeland T-J. Epistemological errors and the return of the Jedi. Problems in mainstream psychology and implications for practice. Keynote speech at Bergen Symposium on Cultural and Critical Psychology. Exploring Psychological Perspectives and Their Practical Consequences, University of Bergen, June 1-2, 2004.
9
Verghese A. I Carry Your Heart. JAMA Cardiology 2016; 1(2): 213.
10
Kant I. Groundwork of the Metaphysic of Morals, 1785.
11
Tillich P. My search for absolutes. New York: Simon and Schuster, 1969.
12
Toulmin S. Knowledge and art in the practice of medicine: clinical judgment and historical reconstruction. In: Delkeskamp-Hayes C, Gardell Cutter MA (eds). Science, Technology, and the Art of Medicine. Dordrecht: Kluwer Academic Publishers, 1993.
13
Phillips C. A beacon in dark times. The Guardian Review Saturday 22 November 2003.
14
Holmes R. Footsteps: adventures of a romantic biographer. London: Hodder and Stoughton 1985.
15
White E. Foreword to The Faber Book of Gay Short Stories. London: Faber & Faber, 1991.
16
Nussbaum MC. Poetic Justice: the Literary Imagination and Public Life. Boston: Beacon Press, 2001.
18
19
20
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us
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M
d
Ac ce pt e
17
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5
Le Guin UK. The Wave in the Mind: Talks and Essays on the Writer, the Reader, and the Imagination. Boulder: Shambhala, 2004. Craik D. A Life for a Life. London: Hurst and Blackett, 1859.
Kleinman A. The illness narratives: suffering, healing and the human condition. New York: Basic Books, 1988.
Rudebeck CE. General practice and the dialogue of clinical practice: on symptoms, symptom presentations and bodily empathy. Scand J Prim Health Care Suppl 1/1992.
21
Berger J, Mohr J. A Fortunate Man. Harmondsworth: Allen Lane The Penguin Press, 1967.
22
Platonov A. Soul (1935-46). New York: New York Review Books Classics, 2007.
23
Berger J, Mohr J. A Seventh Man. Harmondsworth: Penguin Books Ltd, 1975.
24
Williams WC. The Doctor Stories (1951). New York: New Directions Books, 1984.
25
Weil S. Letter to Joë Bousquet, Marseille, May 12, 1942. In Miles S. (ed) Simone Weil: an anthology. London: Penguin, 2003.
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Weil S. Reflections on the right use of school studies, 1942. In Miles S. (ed) Simone Weil: an anthology. London: Penguin, 2003.
27
Jamie K. Findings. London: Sort of Books, 2005.
28
Weil S. Reflections on the right use of school studies (1942). In Miles S. (ed) Simone Weil: an anthology. London: Penguin, 2003.
29
Murdoch I. The Sovereignty of Good. London: Routledge & Kegan Paul, 1970.
30
Rosenberg CE. The Tyranny of Diagnosis: specific entities and individual experience. The Milbank Quarterly 2002; 80(2): 237-260.
31
Weil S. Human personality (1942-3). In Miles S. (ed) Simone Weil: an anthology. London: Penguin, 2003.
32
Weil S. The Iliad or The Poem of Force (1939-40). In Miles S. (ed) Simone Weil: an anthology. London: Penguin, 2003.
33
Barry S. A Long Long Way. London: Faber and Faber Ltd, 2005.
34
Bauman Z. Alone Again: Ethics After Uncertainty. London: Demos, 1994.
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