When we help people in pain – what is our starting point?

Self-memory by Jago

On the Facebook group, Exploring Pain: Research and Meaning, Phil Greenfield writes: “Pain is a subjective experience, with (in the absence of actual tissue damage) pretty much zero in the way of objectively measurable correlative features, so if we’re aiming to help someone who’s in pain, our focus should rest entirely on helping them with regard to their experience, not with regard to pain.

Am I missing something?”

My response was: The experience of pain is important for the person with pain, but meaningless to other people unless there are observable behaviours. The experience of pain is neither reducible to, nor totally separable from, its associated behaviours.

Suppose we encountered a society of people who used a word that lacked any connection with pain-related behaviour, and the complex situations in which we show it. Would we translate this word as “pain”? It is the meaning assigned to the complex pattern of behavioural responses, nonverbal and verbal, and its circumstances, that motivates attempts to help the person with pain.

Meanings of Pain, Volume 3: Vulnerable or Special Groups of People (2022, Springer)

Featured

  • First book to describe what pain means in vulnerable or special groups of people
  • Clinical applications described in each chapter
  • Provides insight into the nature of pain experience across the lifespan

This book, the third and final volume in the Meaning of Pain series, describes what pain means to people with pain in “vulnerable” groups, and how meaning changes pain – and them – over time.

Immediate pain warns of harm or injury to the person with pain. If pain persists over time, more complex meanings can become interwoven with this primitive meaning of threat. These cognitive meanings include thoughts and anxiety about the adverse consequences of pain. Such meanings can nourish existential sufferings, which are more about the person than the pain, such as loss, loneliness, or despair.

Although chronic pain can affect anyone, there are some groups of people for whom particular clinical support and understanding is urgently needed. This applies to “vulnerable” or “special” groups of people, and to the question of what pain means to them. These groups include children, women, older adults, veterans, addicts, people with mental health problems, homeless people, or people in rural or indigenous communities. Several chapters in the book focus on the lived experience of pain in vulnerable adults, including black older adults in the US, rural Nigerians, US veterans, and adults with acquired brain injury. The question of what pain experience could mean in the defenceless fetus, neonate, pre-term baby, and child, is examined in depth across three contributions.

This book series aspires to create a vocabulary on the “meanings of pain” and a clinical framework with which to use it. It is hoped that the series stimulates self-reflection about the role of meaning in optimal pain management.

Meanings of Pain is intended for people with pain, family members or caregivers of people with pain, clinicians, researchers, advocates, and policy makers. Volume I was published in 2016; Volume II in 2019.

Request a sample by emailing me: simon.vanrysewyk@utas.edu.au, or vanrysewyk@hotmail.com

Buy the complete book on Springer’s website, here.

The Face of Pain: Action, Meaning, Control – FACE Summit 2022

Follow the link to watch my presentation here at FACE Summit 2022.

Thoughts on the privacy of pain – #1

Gordon, also known as “Whipped Peter”, a former enslaved African American man, shows his scarred back at a medical examination, Baton Rouge, Louisiana, on 2nd April, 1863. The scars were the result of whipping during his time as an enslaved person at a Louisiana plantation. (Source: Wikimedia Commons)

A reason for thinking that pain is private – hidden to external observers – is the uncertainty that affects our judgements about the pain of others.

When someone appears to be in pain, it seems self evident that what matters is not the pain behaviour that we observe, but the pain experience that lies ‘behind’ the behaviour. We find it natural to say that ‘pain is private; we infer it only inconclusively from the behaviour.’

We naturally think: first-person experience is certain; third-person observation is uncertain. The person in pain has privileged, or immediate, access to his or her pain. Doubt is excluded in the first-person case.

Is this thinking correct?

Following the philosopher Wittgenstein, doubt in the first-person is excluded, not because pain is a private experience, but because the practice of pain excludes it. In the practice of pain, the individual has the role of expressing pain experiences; these expressions include a diverse range of verbal and non-verbal behaviours. In the swing and play of the practice, we treat these behaviours as authentic. To introduce doubt here would alter the practice of pain; importantly, it would undermine our concept of the person.

In clinical settings, this is reflected in McCaffery’s maxim that “Pain is what the person says it is, and exists whenever he or she says it does.” This brings the person to the fore, and makes patients the authority in their pain experience. This approach to pain assessment is also aligned with the principles of patient advocacy and ethical clinical treatment.

Why can’t a person be wrong about his or her own pain? The reason Wittgenstein proposed is that assigning the individual the role of expressing pain means there is no gap between what the person sincerely says her experience is, and what it really is. If we are trying to determine the effect of pain on a person’s quality of life, it is what the person says, and not anyone else, that is correct.

The point is not that the individual feels pain only she can feel, but that we treat her as a person, and on the basis of her behaviours, including self-report, assign to her particular sensations, thoughts, and moods. The ‘privacy of pain’ reflects not the intrinsic privacy of pain experience, but our practice of pain based on the notion of a person whose behaviours are treated as authentic expressions of pain.

Still, a person’s utterances may only partly signify the complexities of pain experience, and some situations warrant people be careful what they reveal. Some pain behaviour may therefore reflect perceived best interests, and this is contextual. Care-delivery in pain settings can involve a threat to the caregiver, and is conditional on the authenticity of pain behaviour. As observers of pain behaviour, we are sensitive to signs of exaggeration, suppression, or malingering. Thus, fine shades of behaviour are important in the evaluation of ‘what is going on’ in the setting of pain, and lead our relation to each other as persons. The practice of pain does not always connect behaviour and pain experience in a rigid way.

Navigating these complexities can make patient-clinician interactions challenging.

Reply: Todd Hargrove’s post “Is Pain a Sensation or a Perception?”

Todd argues for these claims:

  1. The debate is not substantive or of practical import. It does not involve disagreements about pain physiology, what causes pain, or how pain should be treated. Instead, the debate is semantic.
  2. The debate is easily resolved by simply looking at textbooks that describe how the terms sensation and perception are conventionally defined and used.
  3. These textbooks make clear that it is completely appropriate to refer to pain as a perception, and it doesn’t make much sense to say that pain is a sensation but not a perception.
  4. In any event, it doesn’t matter that much how we use these words in practice, because they are inherently fuzzy and often used interchangeably.

I think Todd’s post is a decent contribution to the question, and will make a positive difference to some patients and HCPs.

Below, some thoughts from me; Todd, if you read this, your response is very welcome.

Todd: “…the terms sensation and perception are inherently nebulous and there’s no bright line between them. Why not? Because they encompass a vast number of different physiological processes happening at every level of the nervous system…”

Me: The terms ‘sensation’ and ‘perception’ are ordinary language terms, and do not capture neurophysiological or genetic differences, but differences in the kinds of behavioural and perceptual capacities human beings are interested in. We are social by nature. Human languages include psychological terms because of our need to describe, explain, predict, and otherwise understand the behaviour of other human (and non-human) animals, and because of the need to provide such information to other humans.

Of course, psychological terms can be defined or characterised scientifically, but the original ‘home’ of our psychological vocabulary is the ordinary language we use every day.


Todd highlighted the indeterminacy of our psychological terms, such as ‘sensation’ and ‘perception’; e.g., ‘…there’s no bright line between them’; ‘…are inherently fuzzy, and are often used interchangeably’.

Me: I think the possibility of disagreement or uncertainty about pain in others reflects this indeterminacy. In our ordinary pain language, that indeterminacy is not due to neurophysiological or genetic factors, but to social patterns of behaviour: our concept of pain is flexible because pain behaviour, and our complex reactions to it, is diverse and unpredictable. Care-giving in pain settings can involve a threat to the caregiver, and is conditional on the authenticity of manifest pain behaviour. As observers of pain behaviour, we are sensitive to signs of exaggeration, suppression, or malingering, in behavioural displays of pain. Accordingly, our concept of pain does not always connect behaviour, situation, and personal experience, in a rigid way.

What could follow if we always connected behaviour, situation, and personal experience, in a rigid – necessary – way? To propose a simple, but rather extreme, illustration: suppose a group of people defined pain in terms of a particular neurophysiological biomarker, and used a sophisticated scanner to test for this marker. In their practice, the scanner’s verdict, and not the individual’s utterances or behaviour, is treated as definitive.

Would we want to call this practice a concept of pain? Would this practice be desirable or even possible for us? Would we, for example, accept that an apparent malingerer was in pain, if the scanner said so? Or, that a friend wasn’t, despite her facial grimaces? Would the absence of an abnormal scanner finding be held against a person applying for health benefits?

The new practice with its unanimity and clarity would be a far cry from our current, indeterminant, one. Although some people might engage in this practice, the fact that they do so perhaps makes them a different type of people from us?

Learning the concept of pain – first literature review towards a paper

How do children learn the concept of pain? What is the ‘concept of pain’?

Children’s pain language

“Children rapidly develop an extensive vocabulary to describe pain between 12 and 30 months of age, with words for pain from injury emerging first and reflecting the development of normal speech acquisition. The differences in verbal expressions in the context of minor illnesses and injuries suggest that children make a cognitive distinction between the origins and sensory aspects of pain.

“Children’s expressive pain vocabulary appears to serve multiple purposes beyond simple description.We found that very young children have awareness of objects and actions that can alleviate pain and use language to seek parents’ attention and to engage parents in pain relief activities. In keeping with general language development, the youngest children used individual pain words or exclamations to convey more complex concepts (known as holographic or telegraphic speech) whereas older children demonstrated greater linguistic competence, including use of metaphor, simile and analogy (Karmiloff & Karmiloff-Smith 2001; Meadows 2006). Interestingly, the basic exclamatory vocalizations are retained throughout childhood and may reflect familial or cultural context that persist into adulthood (Craig et al. 2006).We found that parents’ communicative intent was primarily to gain further information from children about the source and nature of pain and to direct children’s behaviour.”

Franck L, Noble G, Liossi C. From tears to words: the development of language to express pain in young children with everyday minor illnesses and injuries. Child: care, health and development. 2010;36(4):524-33.

“Children’s use of the different pain descriptors changes as they grow older. Younger children (≤3;11), for example, mainly use interjections, such as “ouch” or “ow,” and words like “ache” to describe their pain. Literature indicates that children start to use the word “pain” for the first time at the age of 3;0 to 3;11 (Craig et al., 2006) and continue to use interjections and descriptors to describe their pain as they grow older (Craig et al., 2006; Ely, 1992; Wennström & Bergh, 2008).

When younger children do not yet have the cognitive and language skills to explain the bodily sensations that they experience during pain (Dubois et al., 2008), they try to explain pain with concrete phrases like “I lose my smile and feel bad” (Jerrett & Evans, 1986) or “I’m not feeling well” (Kortesluoma & Nikkonen, 2006). Some use comparisons such as “I had a real bad – kinda like a scar” (Ely, 1992) or “Feels like someone hit it with a sledge hammer” (Abu-Saad, 1984a). Other children explain what caused the accident that resulted in the pain experience, such as “I was playing too rough…” (Harbeck & Peterson, 1992) or “I touched the warm pot” (Johnson et al., 2016).

As children’s thinking develops on a more symbolic level, they start to describe their pain by using more graphic descriptors, such as “terrible, disgusting,” “aching and hurting” (Kortesluoma & Nikkonen, 2006), and “beating or pounding in my head” (Harbeck & Peterson, 1992). Older children tend to include intensifiers when using descriptor words: “really bad;” “pain was radiating…;” “pounding, stabbing, throbbing” (Kortesluoma & Nikkonen, 2006); “horrible; annoying; pin-like; sharp; shooting” (Abu-Saad, 1984a; Harbeck & Peterson, 1992; Savedra, Gibbons, Tesler, Ward, & Wegner, 1982; Wilkie et al., 1990); or “aching; stinging; itching” (Abu-Saad, 1984b; Johnson et al., 2016; Kortesluoma & Nikkonen, 2006; Pölkki, Pietilä, & Rissanen, 1999).

From approximately 8 years of age, children start to think in a more abstract way to describe pain: “Sometimes it is worse and sometimes more like stabbing” (Savedra et al., 1982). Building on these skills, older children (> 10;0) use comparisons (“Like there was a fire inside my head;” “Feels like someone hit it with a sledge hammer”) and define pain as a psychological state based on emotions (“Pain is really upsetting no matter where the pain is;” Kortesluoma & Nikkonen, 2006).

Johnson E, Boshoff K, Bornman J. Scoping review of children’s pain vocabulary: implications for augmentative and alternative communication. Canadian Journal of Speech-Language Pathology and Audiology. 2018;42(1):55-68.

Children’s pain behaviour

“A considerable diversity of actions has been identified as signifying pain in children, including behaviors that could be characterized as verbal (e.g., “asking for help,” “complaining of pain,” and “cursing”), facial activity (e.g., “wincing,” “furrowed brow,” and “widening eyes”), nonverbal vocalizations (e.g., “whimpering,” “crying,” and “moaning”), limb action (e.g., “flailing arms and legs,” “rubbing,” and “protecting/favoring/guarding part of body that hurts”), body action (e.g., “tensing up” and “restless”), physiological manifestations (e.g., “looking pale,” “irregular breathing,” and “shivering torso”), and social behaviors (e.g., “withdrawn,” “hard to console,” and “angry verbalizations”).

Factor analyses yielded three major factors: the “Automatic” factor included items related to facial expression, paralinguistics, and consolability; the “Controlled” factor included items related to intentional movements, verbalizations, and social actions; and the “Ambiguous” factor included items related to voluntary facial expressions.”

Sekhon KK, Fashler SR, Versloot J, Lee S, Craig KD. Children’s behavioral pain cues: Implicit automaticity and control dimensions in observational measures. Pain Research and Management. 2017.

Parents/caregivers

“Parents have well developed, although personal, ways of recognizing and responding to their children’s communication of pain, but also experience uncertainty in their judgments. Parents would benefit from information about the developmental aspects of pain and should be included as active partners in their children’s pain assessment and management.”

Liossi C, Noble G, Franck LS. How parents make sense of their young children’s expressions of everyday pain: a qualitative analysis. European Journal of Pain. 2012;16(8):1166-75.

“Overall, 101 pain incidents were observed, the majority of which evoked low levels of pain and distress, which resolved after 1 min. Pain incidents occurred at a rate of 1.02 incidents/child/hour, with 81% of children experiencing at least one incident, which is higher than previous research with preschoolers and daycare staff. Common parent responses included a range of verbal (reassurance) and nonverbal (staying closer, hugging/kissing child) behaviors. Boys were more likely to not exhibit any protective behaviors. Parents were more likely to pick up older toddlers”.

Noel M, Chambers CT, Parker JA, Aubrey K, Tutelman PR, Morrongiello B, Moore C, McGrath PJ, Yanchar NL, Von Baeyer CL. Boo-boos as the building blocks of pain expression: an observational examination of parental responses to everyday pain in toddlers. Canadian Journal of Pain. 2018;2(1):74-86.

“During the preschool developmental period, parents are instrumental in modelling appropriate pain responding through social learning and modulating their child’s response to pain. Although the literature on parental influences during clinical pain experiences has greatly improved our understanding of social factors in paediatric pain, several avenues of research remain largely unexplored. Specifically, the small number of studies which explored everyday pains spanned a wide time-period, with almost 2 decades between the most recent studies. In this same time period, our understanding of parental influences during clinical pain experiences has advanced significantly, but this evidence does not readily apply to everyday pain experiences. An increased focus should be placed on understanding where children learn about pain and how caregivers respond to common pain incidents in their natural environment.”

O’Sullivan G, McGuire BE, Roche M, Caes L. Where do children learn about pain? The role of caregiver responses to preschoolers’ pain experience within natural settings. Pain. 2021;162(5):1289-94.

Is pain a “thing”?

Neuropsychologist Paul Broks on Wittgenstein

On the Exploring Pain: Research and Meaning group on Facebook, Phil Greenfield asks:

“Seeing pain as a ‘thing’ is somewhat inevitable. Pain is so immediate and unpleasant that sufferers naturally want rid of ‘it’. This has spawned a whole raft of of therapeutic models turning out technicians who would claim to be able to remove that ‘thing’ for you.

The experience of pain also has a noun assigned to it (pain) making it even more likely to be seen as a ‘thing’.

The big issue is, how can we uproot that rather persistent problem, and reframe our view of pain as being more akin to love, or grief, or anger, insofar as it has certain sensations associated with it, but that those sensations are not by any means the whole story”.


My response to Phil’s question was (edited):

As I argued in the group here and here, the word ‘pain’, like ‘nausea’, or ‘itch’, is a name of a sensation, but not in the way in which ‘table’ or ‘chair’ are names of furniture. We can point at a table and say that ‘table’ is the name of this (pointing gesture) piece of furniture, but I don’t think we can point at a sensation and say that ‘pain’ is the name of this (pointing gesture) sensation.

I think to say that ‘pain’ is the name of a sensation is to say that there are typical behavioural manifestations of pain, which support statements like ‘Bob is in pain’, and that people who self-report pain are not describing a hidden (Cartesian) object ‘in the mind’, but are signalling to others what is going on with them.

Still, we find it natural to think that pain behaviour is the external sign of a mental object private to the sufferer, which in principle is hidden from observers. In the context of pain underestimation, Kenneth Prkachin writes:

“Evaluating others’ pain is a classic case of decision-making in uncertainty. The difficulty of the task is complicated by the fact that the clinician must try to “look inside” another person. In an ideal world, the clinician would be able to use some kind of “mental dipstick” to slide inside the patient’s consciousness, capture her or his current state, and, on the basis of this reading, recommend further action.

What are the potential sources of underestimation?

A first answer to this question harkens back to the dipstick problem. Because observers do not have direct access to sufferers’ internal experiences, their judgements are reliant on sources of evidence in the sufferer’s behaviour or context. In the setting of most empirical studies, access to that evidence is limited.”

We tend to think that the sole purpose of language is to represent reality; but pain behaviour, including linguistic self-report, does not function to accurately represent a private pain ‘object’. It sounds odd to say, but pain behaviour is not caused by the pain sensation!

Pain behaviour promotes the survival of our species, and is linked with caregiving and care-solicitation; resource allocation and conservation; charity and responsibility toward other members of our big family.

It’s just one of them things you’ve got to try and manage – meanings of pain for people with brain injury

Lis Dreijer Hammond, Simon van Rysewyk, Chalotte Glintborg, Stephanie Kılınç, Giles Hudson

Abstract

Long-term pain is a common comorbidity for people with acquired brain injury. This chapter explores what it is like to live with those two conditions, focusing on the meaning for the individual. The meaning of pain plays a part in determining people’s emotional reactions and behavioural choices, and it is central for the process of psychosocial adjustment to a life with functional, social, participatory, and emotional challenges. Meaning is also closely linked to the identity changes that typically happen once people are faced with the challenge of living with long-term conditions. The field of positive psychology has contributed valuable insights into this process and the roles of benefit-finding, resilience, and post-traumatic growth are discussed. Two significantly different case stories are used as an illustration of life with acquired brain injury and long-term pain. One case, Julie, illustrates the process of adaptation and the other case, Mark, illustrates the challenge of dealing with pain issues when insight and pain perception has been changed by a frontal lobe injury. In both cases, the meaning of pain is integral to the meaning of brain injury. Neither Julie nor Mark consider themselves to have long-term pain, they live with the long-term impact of their brain injury, where pain is just one aspect. In fact, Mark’s altered pain perception causes him to claim that he feels no pain, yet it is nevertheless a challenge for him. The chapter concludes with clinical recommendations, calling for access to systematic, psychosocial rehabilitation that includes meaning-based approaches. A holistic rehabilitation model is proposed, suggesting that traditional medical and rehabilitation approaches need to happen within the context of psychosocial adjustment and rehabilitation, rather than expecting psychosocial adjustment to happen by itself, as a “by-product” of medical, physical, cognitive, and occupational interventions.

Keywords: chronic, long-term pain, acquired brain injury, meaning, purpose, and identity, psychosocial adjustment and rehabilitation, positive psychology, resilience and benefit-finding, post-traumatic growth

Read the article here.

Conceptualising pain in critically ill neonates or infants

Emre Ilhan and Simon van Rysewyk

Abstract

The belief that neonates or infants can feel pain is relatively recent development. Historically, major cardiac surgery was performed in some neonates or infants without anaesthesia, based on the belief that infants had immature nervous systems; therefore, they were incapable of pain, and were fatally vulnerable to the side-effects of anaesthesia. What was standard medical practice in the past is now considered medically unsound and morally unjust. Given that neonates or infants cannot linguistically describe their pain, researchers and clinicians have considered behavioural, physiological, and neurophysiological cues to determine pain in neonates or infants. Pain assessment based on behavioural cues is not an ‘indirect’ means of inferring pain in the neonate and infant because pain experience is not totally separable from its behavioural manifestations. Since pre-linguistic neonates or infants do not possess the concept of pain, in social settings involving pain, the neonate and infant expresses pain only by virtue of a courtesy extended to signs of pain by linguistically competent adults who have already mastered the practice of using ‘pain’. Thus, the aim of this paper is to describe how clinicians and researchers have conceptualised neonatal or infant pain, and what implications these may have in the study of neonatal or infant pain. Craig’s social communications model emphasises how intra- and interpersonal factors surrounding assessment of infant pain influences the caregiver’s ability to decode the behavioural, physiological, and neurophysiological expression of the neonate’s and infant’s pain. Although the neonate’s or infant’s ability to express pain through behavioural signs is an essential aspect of pain assessment, the role of pain detection falls heavily on the caregiver. In some circumstances, such as severe disease acuity, neonates or infants may not have the capacity to respond behaviourally or physiologically to pain. Therefore, it is argued, examining the caregiver’s conceptualisation of the pain is even more important in these circumstances, as it has obvious implications for pain management.

Keywords: neonate, infant, pain, neonatal intensive care unit, pre-linguistic, meaning, concept 


Read the article here.

Meanings of cancer-related pain – Australian Pain Society Annual Scientific Meeting, April 2021, Topical Session

Presented and recorded at the Australian Pain Society Annual Scientific Meeting, April 2021 virtual event

Topical Session
3C: Meanings of Cancer-Related Pain
Tuesday, April 20, 2021
11:15 AM – 12:30 PM

Session Description: Cognitive factors are important determinants of cancer-related pain experience. Simon van Rysewyk describes how cancer-related is particularly sensitive to cognitive factors and describes some common cognitions that people with cancer-related pain have and how they influence patient outcomes. Xiangfeng Xu (Renee) presents on the cultural and social factors that influence cancer pain management of Chinese migrants and what culturally congruent strategies may be implemented to improve their pain outcomes. Melanie Lovell compares levels of suffering in people with cancer-related pain versus non-cancer chronic pain, highlighting differential meanings of existential or spiritual distress and mood dysfunction. Lovell outlines management approaches to cancer pain and suffering that are not responsive to analgesia, such as meaning- or peace-centred therapies.

Session Objectives:
At the end of the session, attendees will know:
– Common meanings of cancer-related pain and what meanings influence specific patient outcomes
– Common meanings of suffering in cancer-related pain and the relationship between these meanings and non-cancer chronic pain experience and mood dysfunction
– Effective approaches to diagnosis and management of cancer-related pain symptoms, including interventions based on meaning
– Impact of culture on Chinese migrants’ perspectives and responses to cancer pain and recommendations for clinical practice

Presenter Duties
Chair: Dr Simon van Rysewyk, University of Tasmania
Organiser/Presenter 1: Dr Simon van Rysewyk, University of Tasmania
Presenter 2: Dr Renee Xu, University of Sydney
Presenter 3: Associate Professor Melanie Lovell, University of Sydney

How do people learn to live with long-term conditions?

FREE Online Networking Event – September 13-17, 2021

Hosted by the International Network of Research into Psychosocial Adjustment to Long-term Conditions – INRePALC

Book here to participate.