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Journal of Evaluation in Clinical Practice ISSN 1365-2753

Trust and truth: uncertainty in health care practice Stephen Tyreman PhD MA DO1,2 1 2

Dean, Osteopathic Education Development, British School of Osteopathy, London, UK Professor, Institute of Osteopathy, Norwegian School of Health Sciences, Oslo, Norway

Keywords aporia, clinical practice, cynefin, habitation, reassurance, truth, uncertainty Correspondence Prof. Stephen Tyreman Osteopathic Education Development British School of Osteopathy 275 Borough High Street London SE1 1JE UK E-mail: [email protected]

Abstract Uncertainty is the ubiquitous presence across health care. It is usually understood in terms of decision making, ‘knowing’ the correct diagnosis or understanding how the human body works. Using the work of Ludwig Wittgenstein, Georges Canguilhem and Tim Ingold, I outline a story of journeying and habitation, and argue that while uncertainty for practitioners may be about enhancing theoretical knowledge, for patients it is about knowing how to act in a taken-for-granted and largely unconscious way in a world that has become uncertain, and in which the main tool of action, the human body, no longer functions with the certainty it once had. In this situation, the role of the practitioner is first and foremost to recognize the uncertainty that has emerged in the patient’s ‘habitation’ and to reassure them by enabling them to have a new or restored confidence in their body so that they can act with certainty.

Accepted for publication: 12 January 2015 doi:10.1111/jep.12332

Introduction A driving force behind the advances of modern medicine has been the confidence that for the first time in human history we really are on the road to explaining what has gone wrong with an ill person, knowing what has caused their disease and the correct action to take to overcome it. Ignorance and uncertainty can be banished to be replaced by reliable knowledge and true understanding of both sickness and health – or so the optimism goes. By the middle of the 20th century, there was expectation that all diseases will eventually succumb to proper (i.e. scientific) investigation. This mostly focused on minimizing uncertainty through better problem solving, refocusing remedial action, utilizing aspects of uncertainty more positively through reflection for example, or simply by being empathetic to the needs and fears of a worried patient. However, in recent years the reality of clinical uncertainty, of not always being able to come up with a justifiable explanation for a person’s illness, the existence of unexpected side effects or non-responsiveness to treatment, of not knowing the best thing to do in a difficult situation, mounting evidence of the effects of social deprivation and psychological confusion on health has been increasingly occupying space in medical journals and books. Although it is only recently that the medical literature has focused on uncertainty in medical practice, some within medicine has expressed concern for many decades. Kenneth Ludmerer, a 470

respected American medical historian, notes that as far back as the 1930s uncertainty was recognized as a key problem in medical education [1]. He reports that: The best way to train for uncertainty . . . was to teach how to approach patients in a rigorous scientific way. . . . The best practitioners were problem-solvers. . . . A second approach . . . was to use the clinical clerkships to study a few patients in depth rather than many patients superficially. . . . Lastly, training for uncertainty was facilitated by keeping one’s focus directly on the individual patient, not on idealized stereotypes. (p. 69) A consequence of pursuing certainty with scientific rigour has been the development of ‘instrumental’ medicine and a testing culture where putative scientific tests are assumed to deliver certainty; the more tests the more certain the judgement can be. This may have contributed to the dehumanizing of modern health care and led to an escalation of costs completely out of proportion to health benefits, together with a social culture that believes that tests provide secure answers [2,3]. Ludmerer puts the blame at the door of medical education: An important cause of excessive testing was the century-long defect in medical education: the failure of medical education to prepare learners to deal with uncertainty. . . . In practice, most attending physicians urged their house officers to do every test possible, to strive for completeness, to push toward the asymptote of certainty. Such ‘inordinate zeal for certainty,’

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in the words of Jerome P Kassirer, a leading student of clinical decision-making, ‘made it difficult for house officers to learn how to use clinical reasoning and observations over time to make sense of a patient’s problem.’ (p. 325) Instead of only focusing on certainty/uncertainty in understanding malady, I will be arguing that understanding uncertainty in relation to why a patient is seeking health care is essential for appreciating the greater task of restoring patient agency.

The driving force behind the advances of modern medicine An article in The Lancet in 1996 was one of the first public acknowledgements that perhaps medical schools should be more explicit in informing students that uncertainty is an inevitable fact of clinical life and help them to adopt appropriate strategies to deal with it and not be paralysed by indecision [4]. Medicine had built its authority on the ability to provide convincing and testable explanations for illness. The traditional message to medical students had been, ‘If in doubt make a diagnosis’. An effective doctor is one who is able to solve the problem, make a diagnosis and prescribe the appropriate treatment for a range of complaints. Unfortunately, there are a significant number of illnesses that fail to be diagnosed because no clear cause for the symptoms can be found. These so-called medically unexplained symptoms (MUS) constitute up to 40% of primary care consultations and divide practitioners into those who recognize this as a phenomenon that needs to be addressed through more scientific research, others who regard it as a failure in diagnosis, and a further group who think that it requires a major reappraisal of what symptoms mean [5–7]. Typical is a series of letters that appeared in the British Medical Journal in 1991 [8–10]. Richard Mayou began the exchange with an appeal for a new look at MUS arguing that patients in this category are not helped by persistently looking for a cause. He argued that if a clear diagnosis cannot be made early further investigation rarely uncovers unexpected findings and only increases a patient’s anxiety. Samuel Cohen responded by implying that being unable to make a diagnosis was an admission of failing to understand what was going on and that he (Cohen) was usually able to make a diagnosis, giving the example of ‘anxiety’ to explain many of these ‘non-physical’ cases. Roger Jones followed up by criticizing Cohen for ‘confusing the art with the science of non-disease’. He cited Keith Thomas’ earlier work where Thomas claimed, from studying his own primary care practice, that about 40% of primary care consultations are not given a ‘firm physical diagnosis, and that most patients recover completely and spontaneously’. Paradoxically, Jones noted that recovery was aided by providing patients with a ‘positive consultation’ in which a clear diagnosis is made (even though it has no physical basis) and the patient reassured. This, Thomas had argued, creates a ‘therapeutic illusion’ by which the practitioner begins to believe their own creative explanations [11]. Jones went on to comment that Dr Cohen’s patients presumably benefit from his diagnostic certainty. For many, appealing to the utilitarian principle that a clear (but unsubstantiated) diagnosis increases patient happiness, raises troubling ethical issues around making statements that are not true, even where the outcome for the patient is improved.

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In the face of this uncertainty, how should the practitioner proceed?

Developing a narrative My aim in this paper is to sketch a scenario around a narrative of journeying. The journey as a metaphor for life stems from its etymological origins in the old French jornee which meant a day’s travel or a day’s work, both fundamentals of living. The association of living with travelling is common in many ways. We might talk of someone having his life mapped out ahead of him, of travelling a well-trodden path, of following in a parent’s footsteps or other such metaphors in pursuit of ambition, or simply finding a way through life. Tim Ingold points to the phrase ‘a way of life’ to show that the way we travel along the way is a personal choice that is just, if not more important as the destination or ‘way’ points [12]. But journey is more than simply a metaphor for life. Living is journeying; a journey from birth to death that entails changing physical relationships (and therefore ‘movement’ of various kinds) with our environment. Life is a journey that entails uncertainty and foremost among the events that bring uncertainty is illness and disease, whether our own, or someone else’s. If health is that which facilitates our ability to live well, then poor health and disease are obstacles on life’s journey that can slow and eventually halt our way. Uncertainty makes travel difficult at the best of times, but maladies1 as a source of uncertainty are particularly damaging as I intend to show. It is the nature of this uncertainty, the specific characteristics it has and the role that the practitioner plays in providing care for a patient that will be the focus for my sketch. In doing this, I will draw on the work of three thinkers from philosophy, medicine and anthropology: Ludwig Wittgenstein, Georges Canguilhem and Tim Ingold. All three in different ways offer alternatives to the naïve scientistic idea that human being, the human condition, and specifically human health/malady can be explained straightforwardly in terms of mechanisms and processes. Wittgenstein’s concept of ‘hinge certainties’ will describe what it is that provides the confidence for human beings to act and to navigate the world with surety and aplomb; Canguilhem’s ideas of normal and pathological show that human living is not a matter of maintaining some kind of physiological standard, a strong defensive fortress to fend off environmental challenges, but of establishing dynamic norms in response to ever-changing environmental conditions – living with rather than fighting against life’s unexpected events2; and Ingold who brings the idea of human living as wayfaring in the context of human habitation. He prefers the word habitation over dwelling because ‘wayfaring is the fundamental mode by which living beings inhabit the world’ [12], a world that is not so much a collection of objects about which human beings travel, but a terrain in which we are enmeshed and which forms the basis of our perceived reality – habitation continually formed by our travelling. 1 I am using the term malady in this paper as a general term for unhealth, sickness, illness, disability and disease in accordance with the OED’s definition as ‘something that calls for a remedy’. 2 Harold MacMillan, former British prime minister, allegedly told a journalist who asked what was most likely to blow government off course, ‘Events, my dear boy, events.’

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To arrive is to stop travelling and death is the only place where we ‘arrive’. My argument will be that it is a category mistake to see health and malady either as biological functioning-dysfunctioning as the conventional biomedical model assumes, or as a predominantly biological condition moderated by psychological, environmental and social factors, as the modern interpretation of the biopsychosocial model implies.3 (It is this category mistake that damaged meaningful communication between the participants in the previously cited British Medical Journal letters.) Instead, I see health as the experience of living well, where living – habitation – is a dynamic process of movement and adaptive ever-changing relationships, a journey across and within a complex, uncertain and at times difficult terrain. One element of that terrain – a terrain that is unique and individual for each person, though it will include experiences common to many – is disease. My point will be that it is not the disease or pathology per se that is the source of uncertainty, though at times it can seem that way, but the context, the way health problems literally get in the way of our journey’s progress. It might seem that I am suggesting that certaintyuncertainty about pathological mechanisms, disease processes and treatment decisions is unimportant, but this is not the case. My purpose is merely to broaden the way we think about uncertainty and to recognize that it is central to the experience of health and malady, not just decision making in practice; that for a patient the problem of uncertainty is not so much about knowing the truth of the matter, what disease it is and what has caused it, but of how that truth is ‘enfolded’ within the ‘implicate order’ of the patient’s world, to use Karl Bohm’s term [13]. Because uncertainty forms a focal point for the patient, it should also be a focal point for the practitioner. There are three main points that I will make. The first is that uncertainty is entailed in how we understand our relationship to the world around us and in the body’s proper response to external challenges; in other words, how we prepare for and adapt most effectively and appropriately to the ever-changing world. The second is the way that a patient’s own uncertainty about the world around them is increased by malady. This leads not just to worry about the condition, what it is and how it might turn out, but to uncertainty about the reality of the world itself as they relate to it. In this sense, I will suggest that uncertainty in health care is not so much about uncertain truth as about uncertain trust; not the validity of what is known, but what is trusted. A key difference between them is that while cognitive truth is truth for us only when it is conscious and explicit – I can only say ‘I know’ something that is in my conscious mind – trust is at its most effective when it is hidden; it is what enables me to go about my actions in the world in a quiet, effective, unassuming, unselfconscious way. It is still knowledge, but it is embedded in my actions, not cognitively explicit. The less I am consciously aware of what I trust, the more effectively I utilize it because trust means that I have implicit faith in what is around me. Hans-Georg Gadamer cites Heraclitus who

3 I don’t believe Engels intended it that way. In both his seminal papers, but particularly the 1980 paper on the clinical practice of the biopsychosocial model, he explicitly based his multifactorial ‘model’ on von Bertalanffy’s general systems theory, and views illness as a network of interrelated factors.

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said, ‘The harmony that is hidden is always stronger than that which is revealed.’ [14] The third and final part of the paper will explore the practitioner’s task, particularly the primary care practitioner’s, in responding to uncertainty and suggest possible directions towards restoring trust for the patient in their world.

Wayfaring and habitation Uncertainty in health care is usually associated with decision making either about the nature of a condition – making a diagnosis, identifying a cause – or finding the most effective therapeutic response to restore health – prescribing treatment. My claim is that in health care and particularly primary care, it is as much about the uncertainty entailed in being a patient. The social anthropologist Tim Ingold sees human living in terms of movement along and within a complex meshwork of lines and connections [12,15]. He argues that human living is habitation rather than dwelling. Dwelling implies something static and fixed, being situated and staying in a particular location; whereas habitation is dynamic and adaptable, something that emerges from ongoing events as a singularity that entails both inhabiting organism and environment. The objects that we associate with an environment, such as mountains, trees, houses and villages, are not to be understood as neutral, independent fixed states that happen to exist in close proximity, waiting for something to take occupancy – like an empty house waiting for someone to move in – but as a dynamic ‘enmeshment’ of relationships, meaning and activity. Ingold cites Gibson who points out that: an environment . . . does not exist in and of itself. It exists only in relation to the being whose environment it is. . . . The environment is reality for the organism concerned.’ ([12] Italics in the original) Human habitation is complex arrangements of human, organic and physical entities relating to and interacting with each other. Once the aforementioned house is occupied it can become a home, an environment created for the people who occupy it in a two-way exchange: the architecture of the house modifies and governs the behaviour of the family, while the activities of the family change the house so that it becomes ‘habitable’ and ‘lived in’. Ingold takes this further and argues that our habitation is always becoming and never complete, forever on the move; like a stream whose existence relies on the fact that it is ever-changing, never still, always in motion. If a stream becomes still it ceases to be a stream and becomes a pond or lake, though these too are dynamic in their own way, always in a state of becoming; their occurrences are different from one another because of the different components of the environment and different modes of enmeshment. The constituents of an environment are not separate objects behaving in individual and characteristic ways that just happen to abut one another; what they are in themselves – rocks, bacteria, water, plants, insects, air, etc. – is bound up into a single system of activity that we might recognize today as a complex adaptive system. There is constant to-ing and fro-ing between the elements that changes them and which in changing are themselves changed. Thus, a rock is moved by the force of water in the stream, which creates an eddy and disturbs the hiding place of a fish, which emerges to consume an insect and to take oxygen from the water and excrete waste chemicals that are transformed by bacteria or

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deposited as silt, which further changes the water dynamics and so on in iterative flows of interconnected activity. An environment in this sense just is all these activities enmeshed into a single activity of ‘streamness’. But, if it were possible to ask the bacterium how it understands the part it plays in the whole process, it wouldn’t be aware; it just does bacterial things and responds in a bacterial way to what is around it. In other words, there is a bacterial story to be told, and a water story, a chemical story, an insect story and so on, in addition to the stream’s story, which is not a separate story, but entails all as it implicates into its order additional stories such as those of the meadow and the wood, the river and the sea. At the same time, the fish’s story and the bacterium’s story interact at various points and influence the direction of each other. This cannot be understood merely as a complicated causal chain of events, but as a phenomenal and organic experience; it is an interactive process threading back and pointing forward, uncertain as to how it will be at any future time. Despite causal uncertainty and ‘fuzziness’, it is nevertheless experienced as balance and harmony. The complex terrain that forms the organic environment with its relationships to concurrent and past events is experienced as a taken-for-granted whole and is the domain in which living creatures carry out the behaviours that are characteristic of them. Particular kinds of actions and movements characterize human living and distinguish one person from another. We each move and act in ways that are subtly different from one another in an environment that is only partly of our own making, linking us to events and people in our past and present. Human action is also environmental action, environmental action is human action. It is a terrain of relational threads and lines connecting and enmeshing us, thereby forming our unique but dynamic sense of reality [15]. This idea is well defined by the Welsh word ‘cynefin’, adopted by Cynthia Kurtz and Dave Snowden to describe their sensemaking framework. It has no direct English equivalent, but is usually translated as ‘habitat’. Its meaning is much richer: Snowden defines it as ‘The place of our multiple belongings’ [16]. It conveys the idea that what we are has emerged from but retains covert links to places, events, people, experiences of various kinds, most of which we have forgotten, but all of which are implicated in who we are. If any of these past experiences had been different, who we are and therefore how we behave would be different at times significantly but more often subtly different. Each of these links, these journeys from a past event to the present, entails a story as every journey is a story and every story is a journey. It is not only a story of living, but also, and to the extent that we journey well, a story of health, of living well. So what gives us the confidence and ability to live a human life, by which I mean to be actors in the world?

Hinge certainties In his final book, On Certainty, Ludwig Wittgenstein explored the basis for our confidence in what we know [17]. On Certainty is a collection of notes compiled over the final 18 months of his life, the last of which was written only 2 days before he died. It is therefore a first draft of ideas that he didn’t live to refine. Despite this, it stands as an important exploration of what we know, what we can be certain of, what we doubt and what we believe. Wittgenstein’s starting point is the attempt by the Cambridge philosopher GE Moore to establish a ‘common sense’ secure foun-

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dation for knowledge. Moore had argued that there must be a set of propositions that just are self-evidently true, such as putting out a hand and saying, ‘I know this is my hand’, or ‘I know I haven’t been to the moon’. They are statements that no reasonable person could doubt as certain. Despite lauding Moore’s attempt, Wittgenstein argues that something is still wrong; not only would any reasonable person not doubt that ‘this is my hand’, but just asking the question (assuming it is asked seriously) would be a sign of madness; no sane person could reasonably question whether what was in front of him was his hand. The point is that the kinds of propositions that Moore was identifying as foundational truths are not truths about knowledge but truths that enable us to act with certainty, and as Wittgenstein points out: ‘Knowledge’ and ‘certainty’ belong to different categories. (OC4 308). There are some things that cannot and should not be justified but taken as they stand. The problem is finding the base. As Wittgenstein puts it: It is so difficult to find the beginning. Or, better: it is difficult to begin at the beginning. And not try to go further back. (OC 471) In Zettel he writes: Here we come up against a remarkable and characteristic phenomenon in philosophical investigation: the difficulty – I might say – is not that of finding the solution but rather that of recognising as the solution something that looks as if it were only a preliminary to it. We have already said everything. – Not anything that follows from this, no, this itself is the solution! This is connected, I believe, with our wrongly expecting an explanation, whereas the solution of the difficulty is a description, if we give it the right place in our considerations. If we dwell upon it, and do not try to get beyond it. The difficulty here is: to stop. ([18] Z 314) Because I just know that this is my hand, that the ground is firm, that I haven’t been to the moon, and that other people with whom I interact take these things as certain as well, I am able to act with confidence. I build up a certainty of what the world is like, not based on theoretical knowledge, but based on practical experience. Without this set of certainties, I would be unable to make my way in the world. If my experience taught me that lions lie in wait at bus stops, or the ground can open up unexpectedly, or my foot won’t support my weight, I simply couldn’t act. I couldn’t walk across a room without tentatively testing the floor first as I might do when I step onto a glass floor high above a canyon, even though, theoretically, I ‘know’ the glass is strong enough to hold my weight. Wittgenstein argues that when we say, ‘I know that is my hand’, that ‘I haven’t been to the moon’, ‘my name is LW’, they are not things that we ‘know’ cognitively, learn from a book or someone teaches us, as we might know that William the Conqueror invaded England in 1066; rather they form a set of certainties that he terms ‘hinge’ or ‘objective certainties’, that form the basis, not of knowing, but of acting; like a hinge that remains in position to enable the door to move. The confusion lies in the fact that we are using the same word.

4 I stick with convention and refer to the paragraph numbers for Wittgenstein books – OC – On certainty; Z – Zettel.

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What we have here is a foundation for all my action. But I feel it is wrongly expressed by the words, ‘I know.’ (OC 414) Certain things are beyond doubt and not, he says, because (w)e just can’t investigate everything, and for that reason we are forced to rest content with assumption. (OC 343) Some propositions, are exempt from doubt, are as it were like hinges on which those turn. . . . certain things are in deed not doubted. (OC 341/2) In his italicized emphasis lies the heart of Wittgenstein’s point – certainty allows us to do, not to know, to experience rather than to theorize. These certainties are not just ad hoc propositions we happen to have made our own; they are certainties because not only are they true for me, they are true for the people I know and, together with other certainties, form for me a coherent whole – a world view. What I hold fast to is not one proposition, but a nest of propositions. (OC 225) They give me and the people I share a community with, a coherent picture, a story of what the world is like and therefore confidence to act in it. Our knowledge forms an enormous system. And only within this system has a particular bit the value we give it. (OC 410) This ‘system’ is so strong, so persuasive that it is almost impossible to think outside of it. If I seriously doubt the world view I have that gives me the confidence to be myself (i.e. to act with aplomb), my world will stop being coherent and fall apart. If a person from the Middle Ages were to be transported into the 21st century, they would find it almost impossible to act because the certainties they have about what the world is like and how it operates couldn’t support the actions required for them to live in the modern world. It wouldn’t simply be a matter of needing to learn new knowledge and skills, it would require a different world view. Nothing would make sense to them in the way that, looking back, belief in magic, witches and spells makes no sense to us now. Wittgenstein makes several references to how we gain certainty; notably the way children acquire knowledge, which is not he argues, through reasoning, but from acting. Children do not learn that books exist, that armchairs exist, etc. etc. – they learn to fetch books, sit in armchairs, etc. etc. (OC 476) We watch young children explore their world through touch and taste and are amused when they apply what they have discovered in one situation to another that we know is different, only to find it doesn’t apply. In their explorations, their certainties are both challenged and extended. Repetition is of vital importance because it makes firm the certainties that will provide the basis for mature living. What Wittgenstein is describing is the way that we ‘author’ a story of the world to fit our experience of it in order to provide us with a framework upon which we can act. Narratives will be personal for each individual but link with the narratives of others in the community. The craftsman’s certainties lie in his ‘knowledge’ of his own skills and abilities, a knowledge implicated in his body – he just uses his hands without thinking of them – but experiential certainty is also implicated in his ‘knowledge’ of the wood or stone he works on; as Heidegger noted, the tools he is so familiar with become extensions of himself so that he can focus his 474

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attention on what he is making.5 Or the doctor who is so familiar with seeing ill patients, she doesn’t need to analyse each situation; most of the time she just knows how to act until her attention is drawn by an uncertainty that is not a failure of knowledge, but a lack of coherence in the singularity of the situation. The idea of a coherent world view resonates with Aaron Antonovsky’s work on stress [19]. From experimental work, he concluded that people who have a strong sense of coherence, which he defined as a global orientation that expresses the extent to which one has a pervasive, enduring, though dynamic feeling of confidence that one’s internal and external environments are predictable and that there is a high probability that things will work out as well as can reasonably be expected (184–5) were better able to cope with stress than people who did not. This idea formed the focus for his ‘salutogenic’ (health causing) model in which he tried to identify what it is that keeps us healthy rather than what it is that makes us ill; what enables us to live with stressors, resist challenges and flourish. It seems to me that Wittgenstein, Antonovsky and Ingold in different ways point to healthy human living as a form of emergence from a world view that frames our sense of reality and enables us to act in characteristically human ways based on experiential certainty. We may not truly know what the world is or understand why it operates as it does – the ‘real world’ versus the ‘actual world’ [20] – but we trust our ability to engage with and travel in the ‘actual world’ because the relationships we have formed make sense and enable us to act; not because we understand. It is our own bodies that we have the most certain knowledge of, not in the sense of biological knowledge that a doctor or physiologist might have, but something more important – we know our bodies with a certainty that enables us to act. A professional footballer may not know the biological structure and function of his foot, leg and nervous system, but the ‘knowledge’ he has enables him to do skilful things with a football. The physiologist and physiotherapist might ‘know’ the foot, leg and nervous system better than the footballer but be unable to use that knowledge to do what the footballer’s feet, legs and nervous systems do. We are all skilled in movement and action, but because we share a common set of complex skills we don’t recognize the amazing nature of them. We may watch babies as they first ‘discover’ their hands and ‘realise’ they can use them to reach out to touch and to grasp. Later, they realize their feet that enable them to push and change their position. This is the beginning of a long process of development enabling confident action based on a broadening sense of reality. The difference between truth-knowledge in a biological sense and certainty-knowledge that enables us to do things is important and the focus of my argument. Doctors ‘know’ bodies in an abstract theoretical way – how they are structured, operate and function – but patients don’t consult doctors because a tissue or organ is damaged. They consult because the certainty they had that enabled them to act has been undermined; they no longer have certainty that this is their hand because suddenly they can’t feel it 5

The concept of a craftsman using tools as an extension of himself was made famous by Heidegger in Sein und Zeit. 25. Heidegger M. Being and Time. Oxford: Blackwell Publishing; 1962.

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or make it do what they had instinctively taken for granted it just could do; or they can’t just get up from a chair and walk to the door, because when they do they get pain, or they feel nauseous when they eat, or lethargic when they do simple things. The certainty embedded in their body has been challenged and because their ability to act is impaired, so is their ability to journey, to make a way through the terrain that was previously so familiar; the environment no longer feels comfortable, it has become hostile and threatening. The world that was open to exploration and through which we could navigate with aplomb feels different and the state that we retrospectively recognize as health and which we took for granted as we found our way has become something else – a malady. Gadamer puts it like this: Health is not a condition that one introspectively feels in oneself. Rather it is a condition of being involved, of being in the world, of being together with one’s fellow human beings, of active and rewarding engagement in one’s everyday tasks. [14] Despite the complex and stochastic nature of all that makes us who we are, our experience most of the time is of life as a takenfor-granted singularity in which our focus is not on how we are constituted, but on what we do, which is also what we are. Human living is characterized by a rich variety of activities from walking, working and playing, to caring, loving, learning, fighting and so forth. Above all, we are actors – agents – who explore, exploit, enhance and evaluate the world in which we live; such activities form rather than simply express our living. This brings us back to our experience of health, or rather the fact that health is silent. We do things, we exercise our agency within the world with little awareness that we are healthy; we take it for granted, it forms part of our background. It is only malady that takes our attention. The idea of health as silence has been around for several centuries. Georges Canguilhem cites the early 20th century French surgeon René Leriche who had defined health as ‘life lived in the silence of the organs’, Charles Daremberg (1865) who stated, ‘in health one does not feel the movements of life; all functions are accomplished in silence,’ and from much earlier, Diderot (1751) who had said, ‘When we go well, no part of the body informs us of its existence; if by some pain it informs us of itself, it is then certain that we are not doing well’ [21]. Gadamer noted: ‘the real mystery lies in the hidden character of health. Health does not actually present itself to us’ [14].

Normal and pathological What I have tried to sketch is a picture of human living as dynamic enmeshment within a world that continues to be made real for us through our actions and engagement with the environment. Our ability to live well is not the result of having good understanding of how we operate or what the real objective nature of the world is and therefore how we should act to live well – people telling me what I should do to live well often confuses me and undermines my certainties. It is also a medical arrogance that theoretical knowledge, derived not from real life but from laboratories and libraries, trumps and trivializes the ‘knowledge’ (though as Wittgenstein pointed out, ‘know’ is not an appropriate word here) patients have of their engagement with their world. My experience, all the actions I have taken in the past, the journeys I have made,

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the stories I could tell are now implicated within the complex but silent order that is me. They may not consciously be in my memory, but they continue to form me. To the extent that they have provided me with a secure basis for living, they constitute the certainty that enables me to act. But what if I lack certainty, what if my experience has taught me that my body cannot be trusted? Disease, and particularly lifethreatening or debilitating disease, becomes a major obstacle to my previously untroubled journey. It interferes with my wayfaring – I am not free to do what I previously took for granted, or to go where I will – and also introduces uncertainty into the knowledge I had of my body. So isn’t it here that modern medicine can provide me with certainties and put me on the right path again by dealing with disease? My answer is a ‘yes, but’. Yes, scientific medicine has given us a much clearer understanding of the mechanisms and processes in the human body than ever before and technical achievements have enabled us to develop treatments, but we have a very poor understanding of how these integrate with our humanness. We continue to treat bodies and people as though they are mechanisms rather than organisms. One person who did recognize this problem was the 20th century French physician and philosopher Georges Canguilhem. He explored the relationship between human living and the human body in health and disease in his MD thesis, The Normal and the Pathological, originally published in 1943, extended with a 2nd edition in 1966 [21]. At the time it created an impact in France but not much beyond probably because it was not translated and published in English until 1978. I do not have space to give a deserving account of his ideas, but his main thesis is that life forms are organisms not machines and in focusing on organisms he steers a path between purely mechanistic accounts of human life – something that he claims is the case with biological explanations – and animistic versions of vitalism in which some kind of vital force imparts life to living creatures. His focus on the organism as a vital entity recognizes the creature in the context of the milieu in which it lives, and where the adaptive process it undergoes enables it not only to live in that milieu, but in so doing be both formed by and further shape the milieu. What Canguilhem adds to the previous arguments made above provides a clearer physiological understanding of human habitation. Canguilhem argues against the conventional way of thinking about pathology as a state that is quantitatively different from physiology and in which treatment of disease is a matter of adding, subtracting or adjusting something in order to restore normality. On this basis, ‘normal’ is the mode derived from statistical analysis of empirical data and ‘abnormal’ is deviation. Canguilhem argues that this is too simplistic, that there are a variety of norms depending on circumstance and environment, and that pathologies have their own norms that are not mere quantitative differences from physiological ones. As part of his analysis Canguilhem examines the etymology of the words ‘abnormal’ and ‘anomaly’ and points out that anomaly comes from the Greek anomalia, which means ‘without smoothness’, that is, unevenness, asperity: he puts it as: that which is uneven, rough, irregular, in the sense given these words when speaking of a terrain. [21] It is not, as often assumed, derived from nomos which means ‘law’ and is the root of ‘normal’ and ‘abnormality’. It means that anomaly is descriptive rather than judgemental, and normality is a 475

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value judgement. This reverses the ways in which the words are usually understood. Physiological ‘normality’ and pathological ‘abnormality’ are therefore not self-evident descriptions of a factual state of affairs that can be found from statistical analysis, but normative judgements that are dependant on circumstance and behaviour. These judgements, Canguilhem argues, are derived from an organism in its environment, where its survival and indeed its evolution depends on how well adapted it is within that environment. ‘Normal’ biological behaviour is an organism that is well adapted to its particular milieu, while abnormal means a failure of adaptation that may be due either to the organism or to the environment being unsuited. A human being trying to live in the sea would be abnormal not because there is something wrong in the physiology of the human, but because human physiology is not adapted to life in the sea. It follows that what is good adaptation in one environment may not be in another and what is good for one creature may not be for another in the same environment. In other words, it is not possible to speak of the normal and the pathological without considering both organism and environment as a whole. He writes: Man feels in good health – which is health itself – only when he feels more than normal – that is, adapted to the environment and its demands – but normative, capable of following new norms of life. (p. 200) What it also means is that there are pathological and disease norms just as there are physiological norms and these norms are not objectively analysable scientific standards that can be used to assess health and malady, but value judgements. . . . the concept of normal is not a concept of existence, in itself susceptible of objective measurement; . . . the pathological must be understood as one type of normal, as the abnormal is not what is not normal, but what constitutes another normal. (p. 203) Medical care, therefore, cannot be simply the restoration of a standard putatively derived from averaging numerous examples, or from laboratory testing. As Gadamer noted: . . . the attempt to impose these standard values on a healthy individual would only succeed in making that person ill. . . . The appeal to standard values, which are derived by averaging out different empirical data and then simply applied to particular cases is inappropriate to determining health and cannot be imposed upon it. (op cit. p. 107) We have then, on the one hand human habitation in continuous formation, a cynefin whose origins are implicate within the order of the organism in its environment, but whose explication cannot be predicted and is therefore uncertain; and on the other, a sense of confidence borne out of knowing how to act with certainty in an uncertain world, ‘knowing’ that there is coherence that can be trusted. But when things occur to change that habitation to render it unfamiliar – malady and trauma being among the most common – uncertainty rises to the top. Taking Canguilhem’s etymological analysis of ‘anomaly’ as asperity, roughness or irregularity in the terrain, disease creates such a loss of smoothness. In these situations, our usual ways of acting smoothly and confidently are stymied and we become uncertain as to how to proceed; we can lose confidence, and above all lose trust and become fearful of our body’s abilities, the coherence of the habitation or of both. It is in this situation that the person loses agency, is no longer able to do what he/she previously took for granted, and he/she becomes a 476

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patient. The Oxford English Dictionary defines agent as ‘Acting, exerting power, as opposed to patient’, and one of the definitions of patient states: ‘Undergoing the action of another; passive. (Correlative to agent)’. The loss of ability to perform actions in the usual expected way marks the beginning of becoming a patient and seeking health care. In the light of all that has been stated, what is the role of the practitioner?

The primary care task If a patient is someone who has lost his agency, or some part of it, either because of a lack of confidence in his own body – the basic set of certainties that he had trusted to enable him take the actions that he valued have let him down – or because the environment in which he acts is now unfamiliar and he feels lost or uncertain as to how to act, then the role of the practitioner is to establish a relationship with the patient in order to re-enable them. My claim is that this relationship is not primarily that of explainer of the truth of what has happened, or of medical engineer to mend and restore damaged or dysfunctional parts, though either or both of these may be required, rather it is a relationship that restores trust and as far as possible allows the patient – who has lost trust in his body or his circumstances – to become a full agent again, by which I mean to be able to act with a (perhaps modified) sense of body certainty in his habitation. Keith Thomas, in referring specifically to patients with MUS, argues such ‘patients are . . . temporarily dependent and want only reassurance and support from their doctor’ [22]. There is within health care a not unreasonable fear of creating dependency in patients, but Tim Dartington argues that dependency is a natural part of life: not a chronic but a transitional state evident at the beginning and end of life and a necessary element in the management of transitions throughout life where the individual is temporarily dislocated from the certainties of previous experience and thus more reliant on the experience of others. [23] My argument is that all malady to varying degrees marks such a transition and is significant not because it is worse than other forms of transitions, but because it challenges the set of relational certainties that enable us to travel through the terrain that gives structure to our lives. In these circumstances, the practitioner becomes for the patient a temporary experienced guide whose task is to re-establish trust, either by modifying and if possible removing obstacles such as disease and disability, or by offering a supporting hand and travelling alongside the patient as they ‘find their way’ (of living) within an unfamiliar terrain and establish new goals in life. There are many ways in which learning to trust their body again and cope more certainly with life’s events can be facilitated for the patient. These range from giving ‘life-style’ advice, or prescribing medication as temporary support, to explaining and making sense of unfamiliar situations. Or it may simply be to provide an empathic and compassionate ear in time of suffering. Trust comes from establishing trustworthy relationships, physical, psychological and social. The aim is either to restore damaged relations, or to establish new relations that better fit the habitation the patient finds himself in. It is in this sense that an upsetting diagnosis (e.g. a life-threatening pathology) is preferable to no diagnosis in which uncertainty persists. There is always a degree of uncertainty regarding the outcome of treatments, and the

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human relationship between practitioner and patient is crucial to providing temporary dependence. In the face of uncertainty, the practitioner becomes someone to trust first and foremost. Key to providing that trust and managing a situation appropriately and effectively is understanding the uncertainty of a patient, not as an uncertainty of truth – not knowing what – but as a practical uncertainty of lost trust in his own body – not knowing how. It is therefore not appropriate and possibly counterproductive to replace a patient’s uncertainty with the practitioner’s cognitive certainties; rather, the role is to help the patient re-establish trust in his habitation, albeit a new experience of habitation, a new norm. It also means that the evidence-based medicine approach firmly rooted as it is in the truth of particular kinds of experiences that are mostly removed from patients’ experiences of habitation may inform, but can never remedy the practical uncertainty that characterizes malady. The foundational role of the primary care practitioner in particular is not to problem-solve, or solution-find, but to support the uncertain patient in learning to trust again – providing an appropriate dependency. Conventional treatment of diseases, pathologies, dysfunctions and disabilities may provide means to establishing trust, but they will always be the means and never the ends. The end goal is to enable a patient to continue wayfaring within an ever-changing terrain, pursuing goals and ambitions in the silence of their health and for which the pursuit of certainty is rarely if ever appropriate. The way we each travel is individual and singular, enmeshed as we are in a particular terrain and in pursuit of personal values.

The pathless path My final comment is to note that a malady can feel like a block or disruption that gets in the ‘way’ of our journey. The Greek word ‘aporia’ (literally without a path) is frequently used to describe a blocked path or impasse marking an end. However, it can also mean a pathless path (i.e. making a path across an open terrain such as a desert or navigating across the sea). Reading a map to follow a road and charting a course to cross an ocean require very different skills. Navigating a course has traditionally entailed a high degree of uncertainty as the terrain itself – whether ocean, desert or wilderness – can be ever-changing. Decision making in health care is usually thought of as akin to map reading, particularly today with guidelines, protocols and algorithms. While this may be appropriate for practitioners dealing with straightforward conditions where they are following a road travelled many times before, it will not be familiar to patients. As a minimum, patients require handholding in the form of reassurance, appropriate explanation and support, but in many cases where the problem is serious, complex, unusual or unexplained, it will be necessary to follow a ‘pathless path’ in which the general direction may be clear, but the footsteps uncertain [24]. It is here, in particular, that patients are temporarily dependent on their practitioner until they become more familiar with the terrain, more certain about their ability to act within it, until they regain their trust and their habitation begins to feel more ‘homelike’, to use Heidegger’s term [25]. None of this can be achieved without recognizing the centrality of uncertainty for the patient and as a guide for restoring health. The context that I’ve tried to describe for this is not of an efficient body machine that can go anywhere, equipped to deal with any

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situation life throws at it – the James Bond-like heroes of fiction, or the (today plasticized or digitized) generic body of medical texts – but of an organic body adapted to ‘fit’ a specific milieu physiologically; more significantly, of the person enmeshed within that environment to the extent that they become one in the way that a bee and a swarm, or a tree and forest become one, each bound up with the other. Key to understanding the complex relationships that enmesh them into one is movement and activity. We engage with and travel within an ever-changing environment that we get to know not by detaching ourselves to observe from a distance with our analytical minds in order to make rational decisions, but by moving and acting within it along paths that are necessarily uncertain, but which, amazingly, are normally navigated with certainty.

Acknowledgements I am grateful to Professor Jan Helge Solbakk, Oslo University, for introducing me to the concept of aporia, which he applied to resolution of moral conflicts, and for the Wittgenstein quotation from Zettel, and also to Michael Loughlin and the anonymous reviewers for helpful comments on an earlier draft.

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17. Wittgenstein, L. (1969) On Certainty. Oxford: Blackwell Publishing. 18. Wittgenstein, L. (1981) Zettel, 2nd edn. Berkeley & Los Angeles: University of California Press. 19. Antonovsky, A. (1987) Unravelling the Mystery of Health. How People Manage Stress and Stay Well. San Francisco, CA: Jossey-Bass. 20. Bhaskar, R. (1978) A Realist Theory of Science, 2nd edn. New York, London,: Harvester Wheatsheaf. 21. Canguilhem, G. (1991) The Normal and the Pathological. New York: Zone Books.

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22. Thomas, K. B. (1974) Temporarily dependent patient in general practice. British Medical Journal, 1 (5908), 625–626. 23. Dartington, T. (2010) Managing Vulnerability: The Underlying Dynamics of Systems of Care. London: Karnac. 24. Pincus, T., Holt, N., Vogel, S., et al. (2013) Cognitive and affective reassurance and patient outcomes in primary care: a systematic review. Pain, 154 (11), 2407–2416. 25. Heidegger, M. (1962) Being and Time. Oxford: Blackwell Publishing.

© 2015 John Wiley & Sons, Ltd.