22 - Pain - an integrative approach

Editors: Goldman, Ann; Hain, Richard; Liben, Stephen

Title: Oxford Textbook of Palliative Care for Children, 1st Edition

Copyright 2006 Oxford University Press, 2006 (Chapter 34: Danai Papadatou)

> Table of Contents > Section 3 - Symptom care > 20 - Pain: Assessment

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20

Pain: Assessment

Anne Hunt

If we are concerned to discover and ameliorate unacknowledged instances of suffering in the world, we must study creatures lives, not their brains. What happens in their brains is of course highly relevant as a rich source of evidence about what they are doing and how they do it, but what they are doing is in the end just as visible to a trained observer as the activities of plants, mountain streams, or internal combustion engines. If we fail to find suffering in the lives we can see (studying them diligently, using all the methods of science), we can rest assured that there is no invisible suffering somewhere in their brains. If we find suffering, we will recognise it without difficulty. It is all too familiar.[1]

This chapter examines pain assessment within a philosophical and social context. Models of pain are introduced that impact on our understanding of pain as perceived by both the pain sufferer and the observer of the other's pain. A social model of pain is identified whereby pain is not viewed as purely subjective but as an experience that has subjective, objective and inter-subjective criteria. Viewed from an intersubjective or social perspective, observers can come to know another's pain. This intersubjective perspective is in turn supported by the idea of pain assessment . Whilst communication of pain from one individual to another is not necessarily straightforward, it can be assisted by the use of pain assessment tools. Several such tools are introduced that may assist in the assessment of pain in children with life-limiting conditions. Their use is discussed in relation to the developmental and disease status of children with potentially life-limiting conditions.

In 1986, Neil Schecter wrote about the under-treatment of pain in children and about the incorrect assumptions that can be held or inappropriate myths that may be believed [2]. He wrote of the inadequacies in training and research and of the complexities of pain assessment in children. Nearly 20 years on, we have seen improvements, particularly in relation to the attention given to pain in the infant, and the assessment and management of acute pain, but we still have some way to go, especially in developing our approaches to pain assessment for children with chronic life-limiting diseases.

In comparison with the attention given to assessment and treatment of acute pain, pain assessment in children with life-limiting and chronic conditions has received relatively little consideration. Of the many chronic conditions suffered by children, pain assessment and management have been matters of primary concern in only a few. These conditions include, for example, pain related to cancer [3, 4, 5] rheumatoid arthritis [6, 7], and sickle-cell anaemia [8, 9]. However, neither pain nor pain assessment has been a primary focus for many of the diagnostic groups for which palliative care approaches are provided or needed. Little is known for instance, or at least little is described in the literature, of the pain experiences of children and young adults with neuromuscular conditions, cystic fibrosis, HIV aids, organ failure, and until recently, progressive and static encephalopathies [10, 11, 12, 13, 14, 15, 16]. In many of these conditions, if recognized at all, pain has been seen more as a diagnostic tool or a measure of disease progression than as something worthy of attention and relief in its own right. Kane writes, Medical interventions based solely on the diagnosis and treatment of disease, limit the medical care of the severely ill child. Such an approach is particularly detrimental when caring for the terminally ill'.[17]. The relief of pain and suffering is pivotal to achieving the best quality of life for patients and family.

Pains experienced by children with chronic and life-limiting conditions may be related to investigative procedures or treatment, the disease, to disability secondary to the disease process, or it may be coincidental to the disease. Even in conditions that are chronic and life-limiting, pain itself may be both acute and chronic. Whereas acute pain may serve as a warning of injury and tissue damage, this pain may not necessarily be associated with major or persistent changes in lifestyle or relationships. However, chronic pain, which may be persistent or recurrent, is often associated with substantial alterations in behaviour and in relationships. Pain associated with life-limiting disease may have substantial effects on child, family, and professional caregivers [11, 14, 18, 19]. Pain has an effect on both the child and the perceivers of the child's pain. It has a social context, meaning, and impact.

Models of pain

What is pain? Each of us has experienced something that we might call pain [20] and yet we have difficulty in providing a

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satisfactory definition of what the phenonemon is. Strawson says that whatever pain is, it is what the word pain means [21, p.215]. For him, and he claims for virtually every human being, it is simply a term for a certain class of unpleasant physical sensations, considered entirely independently of any of its behavioural or other publicly observable causes and effects'. Pain can disrupt activities and in some cases can indicate serious disease [22]. Few people desire pain, though some might be less careful to avoid it than others. As defined by the International Association for the Study of Pain (IASP), it is a subjective experience [23, 24, 25]. It can claim to be private, for no one else can know my pain [26].

Turk and Okifuji describe three conceptual models of the pain experience [27]. First, a traditional biomedical perspective that assumes a one-to-one relationship between pain and the nociceptive input. This model, however, fails to explain changes in the person's pain perception when, for instance, he or she reassured that the pain does not indicate a serious or malignant condition. Similarly, a one to one relationship between the pain experienced and the nociceptive input is not supported when, as sometimes can occur for instance in low back pain, individuals with no apparent tissue damage may report severe pain, whereas others with pathology can be free of pain.

The second model is one that views pain as either physical or mental. The risk of this view is that it creates a dualist perspective'of pain, that is it must be one or the other [27]. Wall describes this as the standard response of most doctors to the problem of pain when there is no obvious peripheral pathology [28]. Wall does not argue with the basic premise of a dualist perspective. He suggests, however, that it is arrogant to believe that we currently have the techniques of diagnosis capable of detecting all relevant forms of peripheral pathology. Research in the last 10 15 years has demonstrated that pathology at the periphery is capable of initiating a cascade of changes that may persist in the central nervous system long after the peripheral pathology itself has disappeared. In addition, sensory systems are not dedicated and hard wired but plastic. Whilst they are normally held in a stable state by elaborate dynamic control mechanisms, under certain conditions they can be pushed outside their normal working range into a state in which they oscillate or fire continuously, a state described as wind-up [29]. The hyperalgesia associated with wind-up is accompanied by persisting genetic changes of the spinal cord cells which contribute to the chronification of pain [30, 31].

The third model suggested by Turk and Okifuji [27], and the one that they propose, is a model that integrates organic, psychosocial, and functional processes. When a patient presents with a complaint of chronic pain, the clinician needs to address each element that comprises the model.

Alternative though related ways of viewing pain and pain treatment have been described, specifically the behavioural and the cognitive-behavioural models. The behavioural model is associated largely with the work of Fordyce [32]. Fordyce used the term pain behaviour to refer to behaviours that communicate the experience of pain to the surrounding environment [33]. The concept of pain behaviour as described by Fordyce, represents a wide variety of verbal and non-verbal behaviours that correlate with the pain experience and communicate to others that an individual is experiencing pain. Such behaviours may include, for instance, going to lie down, limping, bracing and grimacing. A basic postulate of the model is that behaviours are identifiable and readily observed [34]. Whilst the behavioural responses to pain can serve protective functions which promote healing [35], eventually, if pain persists into a chronic state, the behaviour can become detrimental, for example, lack of movement may ultimately impair function [33, 36]. According to Fordyce's concept, pain behaviour is open to operant reinforcement and the responses of others to patients in pain may help or hinder patients coping strategies and can be maladaptive. Fordyce [33] suggests that patients and significant others can be encouraged to promote and reinforce those behaviours that reduce pain and extinguish those that have potential to increase it.

However, pain is influenced not only by behaviour but also by emotions [20]. The behavioural model was, therefore, considered too simplistic because it concentrated purely on pain behaviour, ignoring the thoughts that could maintain or reduce the pain experience. The cognitive-behavioural model is concerned particularly with enhancing coping skills by reducing negative thoughts that can reinforce pain or overt pain behaviours. This model sees patients as active processors of information in which sensory data is not just transmitted from the periphery to the brain but transformed in and by the process. Sullivan [22] describes the cognitive-behavioural model as the psychological counterpoint of the physiological account offered by gate-control theory [26, 37].

The intersubjective or social model of pain

Behaviourist and dualist approaches tend to see pain as not only subjective, that is accessible from the patient's first-person perspective, but also as private, that is only accessible from the patient's perspective. Sullivan [22] describes a further model of pain, an intersubjective model and draws upon the philosophical writings of Wittgenstein in doing so. Intersubjectivity also has roots in the writings of the phenomenologist, Schutz and in the child development literature of Newson [38], Kaye [39], Stern [40], Trevarthen [41], and Schaffer [42]. Intersubjectivity refers to the fact that much of daily life is taken-for-granted and assumes that other people think, perceive and otherwise understand things in pretty much the same terms as we do ourselves. It is this mutuality of

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knowledge that allows us to interact with others [43]. Although the individual defines his world from his own perspective, he is nevertheless a social being, rooted in an intersubjective reality. The world of daily life into which we are born is from the outset an intersubjective world [44, Foreword].

How can we know that other persons or we have pain? Wittgenstein's writings suggest that we need to appeal to something independent of us and of the sensation itself, to establish that we are identifying the same sensation each time. We must have some imagined standard or criteria, else remembering and speaking, have no content [45]. Without criteria for pain and a public pain language, our memory of pain would lack any specificity or distinction. Hence, we apply metaphors [37]. In the McGill Pain Questionnaire for instance, pain has descriptors which feel like something else, for example throbbing , tugging', or drilling [46]. Thus, we can differentiate types of pain by their criteria, associating different sensations with different sources. Pain associated with a myocardial infarction presents differently and is described differently from neuropathic pain for instance. In turn, we can observe behaviour which looks like something else; this behaviour of grimacing and crying, for example, can look like pain . Harr writes to be in pain is a complex but integrated and unitary state, including the having of an unpleasant feeling and a tendency to groan. The groan is not a description of a feeling but an expression of it. So, when we have discursively transformed the groan into a verbal avowal, the same grammar applies. To be in pain is to experience an unpleasant feeling and to be disposed to say such things as I'm in pain [47, p. 42). Pain is not simply manifested and learned in terms of outward circumstances and expressions, these outward expressions help to define the experiences as pain. Pain, as with other sensations and emotions is differentiated by a characteristic expression [45].

Within a social system pain language is both learnt and taught. According to McGinn [48] in her guide to Wittgenstein, contexts in which the child has hurt himself are used to teach him, first of all, exclamations, and later words with which to express his pain. We train the child to use a technique which enables him to express what he feels, not merely in cries and exclamations, but in articulate language. Wittgenstein writes Here is one possibility: words are connected with the primitive, the natural, expressions of the sensation, and used in their place. A child has hurt himself and he cries; and then adults talk to him and teach him exclamations and later sentences. They teach the child new pain-behaviour. So you are saying the word pain really means crying? On the contrary: the verbal expression replaces crying and does not describe it [45, p. 89e, 244].

In the wider social system, rules of grammar or as referred to by Wittgenstein, language games , are created that govern the practices, activities, actions and reactions in characteristic contexts in which the use of a word is integrated [45]. The lessons that the child learns can vary across cultures, within families, or even in the case of the same parent with different children. The child, in Kaye's terms becomes an apprentice in a social system [39], and within this system, the meaning of words is negotiated [49]. Within a family, parents can, for instance, be more or less tolerant of the child's everyday falls or more or less critical of the language the child uses, or more or less critical of the behaviour the child displays. The mother may say It's not as bad as that . As the child matures, the school, the child's peers, and later the physician or society in general may place limits on the appropriateness of the expression or the behaviour, even of the feeling itself. In operant conditioning terms, the pain display, whether in words or behaviour may be reinforced or punished by social pressures.

Pain before language

Sullivan suggests that, whilst it is very real, infant pain is a simple and undifferentiated experience. Research on infant pain has shown this in many ways to be the case. Neonates from as early as 26 weeks gestation, respond with reflexive behaviour not only to stimuli normally considered painful but in certain situations to stimuli which in the older infant would not provoke this behavioural response [50, 51, 52, 53]. In comparison with adults, these cutaneous reflexes are exaggerated with lower thresholds and more synchronized and longer lasting reflex muscle contractions. Whereas the reflex tends in adults to habituate with repeated stimulation, in the neonate, the reflex becomes sensitized. In addition, the receptive field for the reflex in the neonate is considerably larger and decreases with postnatal age [54, 55]. However, even in neonates as early as 28 weeks gestation, behavioural and physiological responses of increasing magnitude are observed in line with increasingly invasive procedures, and in line with the perceptions of observing adults [56]. So, just as pain becomes differentiated through social interactions, codified in language, the sensory pathways of the infant also mature and become biologically more differentiated. Hence, development of pain as a concept can be described in parallel languages, the languages of psychology, sociology and physiology at the very least [57, 58]. Whilst pain may be described through each of these areas of study or languages, it is sometimes necessary to translate between them, and this is not always easy, particularly as certain forms of data come to be more highly valued than others [57].

Recently, a tendency to discount or under-value non-verbal behaviour as an expression of pain, particularly in non-verbal individuals, has become evident with a consequent debate [57, 59, 60, 61, 62, 63, 64, 65, 66, 67,]. Anand and Craig (1996) argued that the

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definition of pain framed by Merskey and Spear and taken up by the IASP [23, 25], excluded certain groups of individuals who could not verbally report their pain. Whilst the IASP definition suggested that verbal reports, whether accompanied by evidence of tissue damage or not, are to be accepted as pain, it suggested that pain indicated by non-verbal behaviour be classified as only probable or inferred . Thus, it assumed a certainty for verbally reported pain that it did not give to non-verbal behaviour [62]. As any one of us, in verbally reporting our pain, can and often do vary our verbal report according to whom we are telling and in what circumstances [68, 69], this certainty, given to verbal reports, as against non-verbal reports, seems questionable. Recently, a note has been added to the IASP definition of pain which at least allows for the possibility that an individual unable to communicate verbally may be experiencing pain and be in need of pain-relieving treatment. In relation to the IASP definition, Popper's assertion that By and large, definitions do not contribute to making oneself understood or making things clear [70, p.18, 19], seems to be substantiated. Our intellectual efforts to define pain are in danger of making us less, rather than more, inclined to respond naturally and appropriately to it.

How, therefore, do we come to agreement on what can and cannot be taken as evidence of pain? As Cunningham notes, not only is pain a subjective experience, witnessing another in pain is also a subjective experience [61, p. 96]. As part of the debate described above, Derbyshire argued that infants less than 12 months of age do not feel pain [66, 67]. His argument was that the ability to verbalize or to perform any other meaningful act of communication is in principle a key marker of consciousness, and that without consciousness the individual does not feel pain. He argued that infants have no subjective awareness until about 12 months of age (presumably when they start to use speech) [66]. One might wish to determine what was meant by a meaningful act of communication because this would raise the question meaningful to whom? Even if not meaningful to the infant the behaviour takes on meaning for the observer. In contrast to Derbyshire's position, theorists and practitioners of child development view placing meaning on (or finding meaning in) the non-verbal behaviour of infants as both a natural process and one that is essential to the development of infants and children. Whilst some child development theorists take the view that human infants have the basic equipment needed to engage in face-to-face interpersonal communication right from birth [41, 71], others believe that the tendency of parents and others to treat them as if they do, is vital to the development and survival of the infant [38, 39, 42, 49]. Dennett refers to this tendency to interpret the other's actions as if, as adopting the intentional stance , an attitude or perspective which we routinely adopt towards one another. The intentional stance, according to Dennett is the strategy of interpreting the behaviour of an entity (person, animal, artefact, whatever) by treating it as if it were a rational agent who governed its choice or action by a consideration of its beliefs and desires [1, p. 35]. He goes on to argue that the point of the intentional stance is to treat an entity as an agent in order to predict its actions. We have to suppose that it is a smart agent, since a stupid agent might do any dumb thing at all [1, p. 45].

Newson argues that the interactions between mother and baby should be viewed as an attempt by the mother to enter into a meaningful set of exchanges with her infant (italics in original) even though she herself is often very aware that the meaning of the communication lies more in her imagination than in the mental experience of the baby [38]. He stresses that to view this social interest in the infant's behaviour by parents or others as a kind of whimsical aberration is a serious mistake. It is in practice almost impossible (or one might say pathological)', Newson claims, for a mother to react to her baby as if it were merely an inanimate thing [38, p. 49]. Fridlund, a behavioural ecologist, has argued that parenthood and childhood co-evolve such that behavioural displays of the infant have co-evolved with vigilance of the adult for them. That human beings so readily recognize and respond to such actions as discrete, implies in turn that our human attentional capacities are similarly organized into acts of looking, listening etc., which resonate in harmony with the actions of other members of our own species'[72]. In support of this argument, recent work by Deyo et al. suggests that by the age of 5 years, children are able to discriminate the facial expressions of pain in others in a linear fashion [73]. Bateson describes how these interactions between parent and child have evolutionary significance [74]. Human infants, unlike ducklings, cannot walk away, are, in fact, extraordinarily helpless. Therefore, the immediate biological task is not to teach the infant to recognize the mother but to teach the mother to recognize, acknowledge, and care for the infant to mobilize a set of maternal behaviours or, alternatively to set the stage so that she will learn these very fast. She must meet both the infant's physical needs and his or her emotional and communicative needs.'

Certainly the capacity of the mother (or alternative caregiver) to infer from the infant's behaviour that he or she is, for example, hungry or in pain would have immense survival advantage and the failure to do so could have dire consequences for the infant, a family and the human species. The capacity to differentiate between sources of distress also facilitates survival and this capacity is enhanced by parents access to the context of the situation and their knowledge of the biography of the child [75].

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The early communications of the child are often situation dependent and the gestures used only have specific reference in the context of that moment. Stern [49] emphasizes that no one set of behaviours has in itself a knowable signal value, but only an approximate one with built-in ambiguity. The more precise signal value is determined by what went before and what direction the negotiation is taking. The timing of the gesture and its contextual significance will often be much more important than the precise movements of which it is made up [38]. The meaning of signals can never be assumed from their physical forms alone. They can often only be understood by the partners themselves by virtue of sharing a particular history of previous communication with each other [38]. There may be particular difficulties for parents of children who are sick or disabled. Unlike healthy infants in normal circumstances, infants and children with disabilities may be limited in their abilities to give signals and to respond reciprocally to the signals of others [76]. Likewise, parents may have difficulties in interpreting what may be the atypical cues of sick and disabled children. In healthy infants and mothers the reciprocal interaction that occurs is positive in nature and encourages both participants to persist in the interaction. In contrast, if the infant is impaired in some way, unclear cues of the infant can lead eventually to unclear cues being sent from the mother, setting up an interaction that may not be reciprocal (or positive) in nature [77].

Pain behaviour

The argument described here is that although primarily a subjective experience, pain is made evident to others through behaviour (both verbal and nonverbal). It is argued that careful observation of behaviour is extremely important because it is one of the few means we have for understanding another's pain experience [59, 78]. Pain behaviour has been widely studied, both in adults and children.

Behaviours that signal pain

Facial expression is widely discussed in the literature on neonatal and infant pain but its importance as an indicator of pain appears thereafter to decrease with age. This downward trend is associated with the development, in older children and adults, of a wider repertoire of behaviour which includes language and which makes the individual, in normal circumstances, less dependent on the response of caregivers [79]. Consequently the older child and the adult are less likely to emit behaviours with high signal value'such as crying and grimacing [72]. In addition, as children mature they learn to moderate their behaviour in line with the expectations of the culture within which they live [72, 79].

Ethologists argue that the criteria for forms of behaviour with signal value are that they are conspicuous, restricted to particular social contexts, have little non-signal function, and possibly show typical intensity [80]. To have signal value they must be signals of something to somebody. Russell argues that there are two contexts that of the displayer and that of the perceiver or judge [81]. In relation to pain, the urgency of the signal is useless unless perceived as such by the observer. From an evolutionary perspective, Schiefenhovel [82] describes pain as a social signal and a releaser of empathy. In perceiving a child's pain, parents and other adults normally experience an empathetic distress which, in most circumstances moves them to take measures to relieve the child's pain. Craig suggests that sometimes the communication process fails because of a lack of precision in the cues. Too often there is a lack of correspondence between children's experience of pain and the adult's perception of it [83]. Craig et al. [84] introduce a Communication Model for understanding children's pain. The model describes four domains relating to pain: the child's experience and expression together with the adult's assessment'and action taken (Figure 20.1).

Each of the domains is relevant to successfully understanding and responding to a child's pain experience. The successful management of the child's pain relies on the sensitivity of the adult to the child's cues, the interpretation they give, and their disposition to act upon their interpretation. Interpretation is particularly important for pain assessment. Philosophically, the Communication Model resonates with the symbolic interactionist approach of Mead and Blumer. Two types of interaction are described [85]. The first type is described as a conversation of gestures through non-symbolic interaction , whereby direct response occurs without interpretation, a response that might be described in behavioural terms as reflexive or instinctual. The second system is the use of symbolic interaction which involves an interpretation of the meaning of the other's action before one responds. According to Mead, human beings engage plentifully in non-symbolic interaction, responding immediately and reflexively to each other's bodily movements, expressions and tones of voice, but the characteristic mode is the second, where interaction occurs at the symbolic level, as they seek to understand the meaning of each other's action. The main tenants of Symbolic Interactions identified by Blumer [86] are that:

Human beings act toward things on the basis of the meanings these things have for them.

The meaning of these things is derived from, or arises out of the social interaction that one has with one's fellows.

These meanings are handled in and modified through an interpretative process used by the person in dealing with the things he encounters.

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Fig.20.1 A communication model for understanding children's pain. Figure reproduced with permission from publishers and author. Copyright 2003, Lippincott Williams & Wilkins. All rights reserved.

Facial expression

Pain, at least in infancy, appears to have a unique facial expression [79]. Five facial movements have consistently been found to be associated with pain in healthy, full-term newborns subjected to heel lancing and to hypodermic injections. The facial actions most commonly described comprised brow lowering (brow bulge), eyes squeezed shut, deepening of the nasolabial furrow, open lips and mouth, and a taut cupped tongue. These five actions, along with five other variables, horizontal and vertical stretch mouth, lip purse, chin quiver, and tongue protrusion, made up Grunau and Craig's Neonatal Facial Coding Scheme (NFCS) [87, 88]. Facial expression in adults has been found to be similar. Prkachin [89] described a set of four facial actions consistently shown and which carried the bulk of the information about pain. These four actions were brow lowering, tightening and closing of the eyelids, nose wrinkling and upper lip raising The tongue cupping described by Grunau and Craig [88] appears to be behaviour more associated with, or more visible in, young infants than the older child or adult.

Few studies have looked in detail at the facial actions that occur with pain in children after infancy. Changes in facial anatomy occur during the transition from infancy to the toddler years and the Child Facial Coding System (CFCS) was developed to incorporate those changes. This system focuses on 13 discrete facial actions which include both the gross and more subtle movements observed in the young child's facial pain display [90]. The facial actions are very similar to those observed in neonates and appear to occur consistently in response to brief pain events such as immunization, venepuncture and finger lance. However, the simultaneous display of all actions is uncommon and individual differences are observed [91]. In a study of pain reaction in 8 adolescents with profound neurological impairments, video-raters coding on CFCS failed to differentiate between occasions when a flu vaccination was administered and a dummy injection. Interestingly, global pain assessments made by observers were significantly higher in the vaccination group.

Although individuals do appear to show very similar facial, gestural, postural and physiological signs of pain even in different cultures [89, 92], Izard, Ekman, and Fridlund [93] all agree that facial expressions cannot be understood independently of the context in which they occur. Context depends not only on the structural features of the situation but also has historical and biographical features as it depends also on the succession of interactants displays and the responses made to them.

Vocal (non-verbal) expression of pain

Whilst facial expression appears to be the most salient pain cue in infants, cry, or other vocal cues are often taken as the most reliable indicators of pain in older children [94]. Experimental studies have shown that adults (including parents) can sometimes distinguish the causes of infant's crying. However, this was only if the range of eliciting conditions is sufficiently limited, if the cry exemplars are carefully preselected, and if the range of possible interpretations is narrowly constrained [95]. Early studies by Sherman of global response (rather than cry alone) showed that there was a considerable lack of agreement when adults had no information regarding the eliciting stimulus [95]. The stimulus that appeared to immediately precede the response (whether it was the actual initiating stimulus or not) was the best predictor of the adults, judgement as to cause of the infant's cry.

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Just as observers have difficulty in discriminating between facial expressions of distress, Galati and Levene [96] demonstrated that parents had difficulty differentiating between cries and tended to attribute most of them to hunger, even those that were precipitated by painful stimuli. Within the normal home setting, it appears that cry alerts the parent, whereas any suppositions about the cause of crying are based on the individual's knowledge of the context [95, 96].

Crying in the infant and young child is therefore not very specific. It can be difficult to distinguish cries of pain from those of hunger, anger or protest [97, 98]. This is particularly so in the absence of contextual cues. It may be easier to differentiate between the cries of a specific infant with whom one has on going contact than to determine the differences between cries across a number of infants with their inevitable individual differences. As well as being accustomed to the intra-individual variation in their child's cries, parents have knowledge of such factors as the child's behavioural dispositions, health status, and time since feeding for instance which help them in distinguishing one cry from another [75].

Johnson and Strada suggest that it may be differences in pitch, frequency and latency of the cry rather than the cry itself that alerts the parent to a cry of pain [99]. Cry type appears to be less specific and meaningful than cry gradation with the early part of the cry appearing to impart more meaning than the later part [95]. Whereas, in the case of an acute pain stimulus, cry may start loud and then reduce, cries associated with hunger tend to start more softly and then become more intense with time. The sudden loud cry associated with an acute pain stimulus or startle of any kind is more likely to draw an immediate response from the parent [95].

When facial and cry variables were considered together, Hadjistavropoulos et al. [100] found cry variables added little to the prediction of ratings in comparison to facial variables. The authors concluded that whilst cry would seem to command attention, facial activity, rather than cry, accounts for the major variations in adults judgements of neonatal pain.

Whilst crying may be a generalized distress signal in the infant, as the child matures, the nature of the vocal expression of pain is likely to widen in range, for example groaning, moaning [101, 102] and sighing [103, 104] become part of the repertoire. In relation to older children, Hamers et al. [94] found that vocal expression, especially crying, most influenced nurses pain assessments and decisions to intervene with analgesic treatments. Other factors were the medical diagnosis, age, parent reports, and nurses knowledge, experience, attitude and workload. Overall, the presence of a particular diagnosis appeared to legitimate the child's pain complaints. Here again, context, whether in this case truly related or not, appears to play as important a role in determining the cause attributed to the child's cries as does the nature of the cry itself.

Bodily movements and posture

Whilst facial expression and cry appear to have signal value and function to alert others to the sufferer's plight, bodily movements and changes in posture may have additional or alternative functions. Wall [35] has described the behaviour of animals in response to acute pain as agitation, aggressiveness, guarding, and splinting of the injured area. After those initial responses and when confronted with persistent pain, animals are quiet, solitary, antisocial with prolonged sleep and minimal movement. Humans, Wall states, respond to persistent pain by limiting movement of the injured part, restricting movement in general, sleeping for long periods, eating poorly, and restricting social contact.

In cancer, both acute and persistent pain can occur. In a study of pain behaviour in adults with lung cancer, patients reported that they used 42 different behaviours to control pain. Behaviours such as rotating or shrugging the shoulders served to alter ascending nociceptive input, whilst others, such as listening to music and reading diverted cortical attention and hence stimulated descending modulation. The number of behaviours reported correlated with pain intensity and predicted the length of time pain had been experienced. No behaviour was reported to be performed to express pain [105].

In line with the descriptions by Wall [35] and with the pain control concept, Gauvin Piquard et al. [106] described an antalgic group of behaviours through which a young child with cancer might take up a position which causes least pain. Another group of behaviours described was one of psycho-motor atonia where the child takes on an attitude of helplessness and becomes still and withdrawn, avoiding eye contact or any participation with his surroundings.

Changes in posture and movements, therefore, can serve a variety of purposes and functions; to prevent pain, to control and relieve pain, and as behaviour associated with changes in mood, for instance through depression associated with persistent pain. Though the purpose may not be to communicate pain, whether intended to do so or not, these behaviours can signal pain to those around them [105].

Physiological changes

Pain evokes physiological changes that can be measured. These changes include changes in heart and respiratory rate, vagal tone, blood pressure, oxygen saturation, transcutaneous oxygen and carbon dioxide tension, and intracranial pressure. However, many of these changes will not be readily accessible to measurement in the clinical situation [107].

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Heart rate

Several studies have reported that among the indicators used by professionals in their assessment of pain are increased heart and respiratory rate [108, 109, 110]. After an initial slowing of the heart rate following an acute pain stimulus, heart rate has been shown to increase [99, 111]. In turn, this increase in heart rate has been shown to be responsive to analgesic treatments [112, 113, 114].

Respiratory rate

Changes in respiratory rate with pain are not consistent across studies [97]. In some studies, respiratory rate has tended to be reduced with a painful stimulus, in others, increased. In other studies, variability in rate has altered but not the rate itself [115]. Changes in rate or variability of respiration appear to be more important as indicators of pain than the direction of change.

Hormonal response to nociceptive events

Pain evokes a physiological stress response that includes out-pouring of pituitary, adrenal and pancreatic hormones [116]. However, these responses are variable and not specific to pain. Although not specific to pain, a positive association has been demonstrated between plasma cortisol levels and nociceptive stimuli such as inoculation and circumcision [117]. Even the fetus has been shown to demonstrate a cortisol response to a noxious event [118]. Recognizing that drawing blood by heel-stick or venepuncture is itself a stressful event [119], many of the more recent studies have used saliva cortisol in preference to plasma cortisol measurements. Positive relationships have been identified between saliva cortisol and acute noxious events such as inoculation [117, 120, 121, 122], circumcision [123], and heelstick [119].

Few studies, have investigated physiological response to non-acute pain but there appears to be some relationship here too. Subacute pain and distress of neonates has been investigated. Compared to a control group, significantly higher concentrations of saliva cortisol were found in distressed infants being ventilated and in those with pain due to necrotising enterocolitis and meningits [124]. In a study of verbal children attending a hospital casualty department, positive correlations were noted between saliva cortisol and self-report (VAS r 0.35, Faces score r 0.36). Correlation was higher between saliva cortisol concentration and the extent of injury itself (r 0.63) [125]. In the course of validating the Paediatric Pain Profile (PPP), a pain assessment scale for children with severe neurological impairment, saliva cortisol concentration correlated (rs 0.38 0.45) with each of three observers PPP scores of children filmed during everyday morning activities [13]. Generally, however, cortisol concentrations appeared low and may have been influenced by additional factors besides pain. Moore et al. [126] investigated the association between urinary cortisol excretion and chronic pain in a pain clinic population. Thirty percent of adult patients with chronic pain were shown to have urinary cortisol to creatinine ratios above the normal range. However, this response was higher in the patients with more recent onset of chronic pain suggesting that some habituation had occurred in the response.

Self-report of pain

The ability of children to describe and rate their own pain varies with their age, developmental stage, and health. Work has been ongoing over a number of years to develop assessment tools to facilitate the communication of the intensity of the child's pain to the child's caregivers. As children are less able than adults to quantify and qualify abstract phenomena, measuring techniques must be appropriate to the child's cognitive and developmental levels. The concepts of the psychologist, Piaget, are useful in understanding how the child's development affects his capacity to use pain assessment tools [127, 128].

Piaget describes several stages through which the child's thought becomes more logically structured and increasingly free of the necessity for concrete situations [128]. Most pain assessment tools involve the concept of seriation, that is, placing or conceptualizing things in order of magnitude. After puberty, seriation problems can be solved abstractly, but prior to this the domain needs to be concretely present for the seriation to succeed. Piaget's stages 1, 11, and 111 in the development of seriation behaviour correspond respectively to the pre-conceptual, intuitive and concrete operational periods he describes [128]. Piaget's concepts of logic and order are supported by research on the ability of children at different ages to correctly order faces on faces pain scales [129, 130, 131, 132].

Young children 3 11 years

  • Preconceptual (Stage 1). Children from 3 4 years of age are at a pre-conceptual level of development. At this age, children have limited sense of seriation and therefore difficulty in carrying out tasks which involve placing things in order, for instance they would be unable to reliably place in order of size ( to staircase ) a series of 7 blocks [128].

  • Intuitive (Stage 11). At the age of five or six, children have a sense of big and small and become more able to construct the perfect staircase, but only by means of trial and error. Once built, they may pick out extremes in it but would be unable to insert extra blocks once it is built. This suggests that pain assessment tools such as the poker chips [133], a small number of different size blocks [98], or faces scales with a minimum number of faces such as the Oucher [129]

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    may be best suited for this age group. Younger children are unlikely to volunteer that they have pain and it is important to be vigilant for behavioural indications of pain. Use of a behaviour rating scale such as the DEGRr may be helpful [106].

  • Concrete Operations (Stage 111). From 7 years to adolescence, children enter, in Piaget's terms, a period of concrete operations where they acquire the concept of conservation and reversibility. They can think in terms of longer, higher, bigger, and sort objects on the basis of col our, size, and shape. From 7 or 8 years, children can reliably build the staircase , starting with the longest or shortest and systematically adding the next in size and will now be able to add in an intermediate-sized block to the pre-existing staircase [128]. Children become capable now of elementary logic, but can still only apply it to concrete events. At this age they become more able to use tools to quantify pain. In addition to the earlier suggested tools, they can use other more schematic faces scales [130, 132, 134] (Figures 20.2, 20.3 and 20.4), visual analogue scales (VAS) [135], or colour analogue scales [135] (Figure 20.5).

Adolescents 11 18 years

Adolescents are, in Piaget's terms, at a cognitive stage of formal operations and are able to abstract, quantify and qualify phenomena. At this stage they may be able to use scales as in adults and do not need any props to do so. For instance, adolescents

Fig.20.2 The Wong baker faces scale. (From Wong, D.L., Hockenberry-Eaton M., Wilson, D., Winkelstein, M.L., and Schwartz, P. (eds). Wong's Essentials of Pediatric Nursing, St Louis, 2001, vol.6:p.1301. Copyrighted by Mosby, Inc. Reprinted by permission.)

Fig.20.3 Facial affective scale.

Fig.20.4 Faces Pain Scale Revised (FPS-R). Copyright 2001 International Association for the Study of Pain (IASP).

Fig.20.5 Eland colour scale. (Reprinted with permission of J.M. Eland from McCaffery, M. and Beebe, A. Pain: Clinical Manual for Nursing Practice. St Louis: CV Mosby Co.; 1989.)

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Fig.20.6 Memorial Symptom Assessment Scale (7 12). (Reprinted from J Pain Symptom Manage 23(1), Collins, J.J., Devine, T.D., Dick, G.S., Johnson, E.A., Kiham, H.A., Pinkerton, C.R., Stevens, M.M., Thaler, H.T., and Portenoy, R.K. The measurement of symptoms in young children with cancer:The validation of the memorial symptom assesment scale in children aged 7 12. 2002, with permission from U.S. Cancer Pain Relief Committ.)

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may use a numerical rating scale (0 10 scale) to scale their pain without any tool being present. They can be asked, for instance How would you rate your pain on a scale of 0 to 10? 0 is no pain and 10 is the worst pain imaginable'. Verbal rating scales or VAS will also be appropriate. However, when ill, adolescents may regress to earlier stage of development and they may find it easier to use a more concrete tool. Faces scales appear popular at least in the short term.

At all ages, body maps may be useful in eliciting site, dimensions and intensity of pain [136] (Figure 20.6). The child's drawings can help the carer to gain an impression of the child's pain and provide an opportunity for conversation about the pain with the child and parents [137].

Pain is not alone in causing distress to children during chronic and life-limiting illness. Collins and colleagues have developed two scales based on the Memorial Symptom Assessment Scale to assess and monitor symptoms that can cause discomfort and distress for children with cancer [139, 140].

Assessing pain in children with severe to profound neurological disability

Children with severe neurological and cognitive impairments face significant barriers in both expressing pain and in obtaining appropriate and timely help [141]. Difficulties may lie on both sides, for the individual experiencing the pain, who can have difficulty encoding expressive behaviour, and for the caregiver, who may lack skills required to decode the behaviour. In the face of these difficulties, pain may go unrecognized and untreated [84] or be misinterpreted and treated inappropriately. In addition to difficulties in communicating the fact of pain itself, a multitude of potential pain sources in the child makes identifying the source and providing a useful treatment challenging [91]. There has been an increasing interest over the last 10 years in eliciting the types of behaviours which signal to caregivers that the child has pain [13, 15, 16, 142, 143, 144]. These studies have resulted in a degree of consensus on the pain cues displayed (Table 20.1) and subsequently the development of behaviour rating scales which demonstrate satisfactory reliability and validity in this population of children [15, 145]. The PPP is a behaviour rating scale developed to assess pain in children with severe motor and learning disabilities [13, 14, 16] (Figure 20.8). The tool is envisaged as a parent held document, and contains documentation of the child's pain history, baseline, and ongoing pain assessments.

Some children with neurological impairment, even those who are without speech, provided they have sufficient cognitive skills, may be able to use self-report tools when these are made

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Fig.20.7 Memorial Symptom Assessment Scale (10 18). (Reprinted from J of Pain Symptom Manage, 19(5), Collins J.J., Byrnes M.E., Dunkel I.J., Laplin J., Nadel T., Thaler H.T., Polyak T., Rapkin B., and Portenoy R.K. The measurement of symptoms in children with cancer, pp.363 77. 2000 with permission from U.S. Cancer Pain Relief Committee.)

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available to them [146]. This case history is presented as an example.

Case

Kate was 16 years old and had a neurodegenerative disease. Her developmental level approximated that of a 7 8-year old. She had no speech and very limited voluntary movement. Most of her communication was by facial expression and by yes and no replies to questions. She signified yes by glancing to the right and no by glancing to the left, or alternatively yes by raising her right arm. Whilst she was extremely expressive, it wasn't always easy to tell what she was expressing. Kate's pain was recorded using a pain diary in conjunction with the Facial Affective Scale [130]. The faces scale and a body map [137] were incorporated into her Bliss symbol communication book that went every-where with her and from which she could chose subjects that she wanted to talk about. It was possible to elicit from her on one occasion that she had toothache, which necessitated, rather to her dismay, a visit to the dentist for extraction of a decayed tooth, and later, on a more ongoing basis, pain in her back probably due to increasing kypho-scoliosis. It was then possible to monitor relief from that pain with the administration of once daily sustained-release diclofenac.

The pain assessment process measurement and meaning

The World Health Organization (WHO) provides guidelines on cancer pain relief in children [147], guidance which is equally relevant to children with other life-limiting conditions. In relation to pain assessment, they recommend the following ABC's :

  • Assess. Always evaluate a child with cancer for potential pain. Children may experience pain, even though they may be unable to express the fact in words. Infants and toddlers can show their pain only by how they look and act; older children may deny their pain for fear of more painful treatment.

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Table 20.1 Identification of pain cues of children with neurological and congnitive impairments

Author

San Salvador [144]

Non-communicating children's Pain checklist [144,145]

Paediatric Pain Profile [13,15]

Population

Patients attending institutions for multiply handicapped

Non-verbal individuals with learning disabilities

Children with severe to profound neurological and learning impairment

Cue generation

Elaborated by physicians and nurses based on clinical experience (n=5).

Interviews with primary caregivers of 22 children aged 6 29 years (mean 14.5 years).

Interviews (20) with parents of 21 children aged 2 18 (mean 11 years) Interviews with professionals (26). Questionnaires to parents (120) of children aged 1 to 25 (mean 11 yrs) (only 2/120>18 yrs)

Coding

22 items reduced to 10

Interviews reviewd and list of 31 items produced which was them used to code interviews.

56 behaviours identified through inductive coding of interviews and questionnaires. Each of 56 items, identified by >5% of responders. 56 items subsequently reduced to 20 through process of combination and elimination.

Coding assessed

 

8 interviews coded by 2nd rater

12 interviews reviewed by 3 co-investigators

Study setting

31 patients likely to be suffering and 31 without reason to suffer. Age 2 33 years (mean 16.5). 22 items reduced to 10.

Daily life:Short sharp pain; Longer lasting pain

Daily life any situation. Info re pain sources collected. Parents of 132 children +26 professionals from mixed disciplines

Vocal

Crying with or without tears Moaning or inaudible cries Shouting or crying

Moaning, whining, whimpering Crying Screaming/yelling Specific sound

Cried /moaned /groaned /screamed or whimpered

Facial expression

Painful expression

Cringe/grimace

Grimaced/screwed up eyes or face

 

Anxious

Furrowed brow

Frowned/had furrowed brow/looked worried

 

Smirking

Change in eyes, including eyes tightly shut, eyes open wide;eyes as if frowning

Looked frightened (eyes wide open)

 

 

Turn down of mouth, not smiling

Ground teeth or made mouthing movements

 

 

Lips pucker up, tight, pout, or quiver

 

 

 

Clenches teeth, grinds teeth, chews, thrusts tongue

 

Mood

 

Not co-operating, cranky, irritable, unhappy

Less cheerful/sociable/responsive Appeared withdrawn or depressed

 

 

Less interaction, withdrawn

Hard to console or comfort

 

 

Seeks comfort or physical closeness

Bit self or banged head

 

 

Difficult to distract, not able to satisfy or pacify

 

Eating and sleeping

 

Eats less, not interested in food

Was reluctant to eat/difficult to feed

 

 

Increase in sleep

Had disturbed sleep

 

 

Decrease in sleep

 

Protective (antalgic)

Co-ordinated defensive reaction

Flinches or moves body part away, sensitive to touch

Pulled away or flinched when touched

 

 

 

Tended to touch or rub certain areas

 

Protection of painful areas

Gestures to or touches part of body that hurts

Resisted or was fearful of being moved

 

 

Not moving, less active, quiet

 

 

 

Protects, favours, or guards part of the body that hurts

Movement and posture

 

Moves body in a specific way to show pain (e.g. head back, arms down, curls up) Stiff, spastic, tense, rigid Jumping around, agitated, fidgity Floppy

Was restless/agitated or distressed
Flexed inwards or drew legs up towards chest
Tensed/stiffened or spasmed Twisted and turned/tossed head/writhed or arched back Had involuntary (or stereotypical) movements/was jumpy/startled or had seizures

 

 

Stiff, spastic, tense, rigid

Twisted and turned/tossed head/writhed or

 

 

Jumping around, agitated, fidgity

arched back

 

 

Floppy

Had involuntary (or stereotypical) movements/was jumpy/startled or had seizures

Physiologic

 

Shivering

In original 56 items were appeared hot, sweaty,

 

 

Change of colour, pallor

altered breathing, pallor, redness

 

 

Sweating, perspiring

 

 

 

Tears

 

 

 

Sharp intake of breath, gasping

 

 

 

Breath-holding

 

Fig.20.8 Paediatric pain profil

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  • Body. Be careful to consider pain as an integral part of the physical examination. Physical examination should include a comprehensive check of all body areas for potential pain sites. The child's reactions during the examination grimacing, contractures, rigidity, etc. may indicate pain.

  • Context. Consider the impact of family, health care and environmental factors on the child's pain.

  • Document. Record the severity of the child's pain on a regular basis. Use a pain scale that is simple and appropriate both for the developmental level of the child and for the cultural context in which it is used.

  • Evaluate. Assess the effectiveness of pain interventions regularly and modify the treatment plan as necessary, until the child's pain is alleviated or minimized.

Although validity and reliability of pain assessment instruments is important in both research and clinical settings, the provision of an aid to communication may be the most vital function of a pain measurement tool for children in the palliative care setting. When, for instance, a child lying rigid in bed is asked how bad his pain is on a 0 10 scale and he replies 11 , the reply, though it might not be considered valid in psychometric terms, certainly conveys meaning.

The main purposes of pain measurement within the clinical setting are, therefore, to

  • describe and quantify the experience,

  • monitor the effects of treatment,

  • provide the individual with a shared medium through which he or she can communicate the experience to others.

Pain measures may ultimately be most useful as a channel of communication between the clinician and the patient, not as an alternative to talking to the child and family, but as part of the conversation. Engaging with the child and family is necessary to understanding not only the nature and context of the child's pain, but also the family's fears, goals and aspirations, knowledge of which may help to determine the appropriate treatment.

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Oxford Textbook of Palliative Care for Children
Oxford Textbook of Palliative Care for Children (Liben, Oxford Textbook of Palliative Care for Children)
ISBN: 0198526539
EAN: 2147483647
Year: 2004
Pages: 47

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