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.

FACE Summit 2022

FACE Summit 2022 will take place on May 21, 2022, online and live (School of Face ZOOM Platform), with lectures in English, Spanish and Portuguese. Keynote speakers are exclusive guests of the organizing committee.

The FACE Summit is a registered event from the original idea by Dr. Freitas-Magalhães, PhD, and organized by F-MGI and FEELab/UFP. The FACE Summit motto is “the face is our emotion”. More info: face@facesummit.pt #facesummit2022

I am presenting a keynote presentation, “The Face of Pain: Action, Meaning, and Control”.

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.

Illness, indefiniteness, diagnosis

Sculptures by Fabio Viale

Over on Twitter, Michael Ray tweeted this nice passage form Hari Carel’s book Illness, the Cry of the Flesh (2019):

“If illness is part and parcel of life, and on a continuum with health, then our experience of it will be as diverse as our experiences of health or of life in general. In other words, it would be difficult to generalize the experience.”

Illness is definite enough for us to see patterns in it. For example, frequent and severe pain often leads to help-seeking behaviours. But, it is not so definite to be describable in terms of fixed or rigid rules. If we do describe illness in terms of patterns, these must be sufficiently flexible to encompass a degree of indefiniteness – frequent and severe pain does not always lead to help-seeking behaviours.

This indefiniteness is important for human beings, as it allows for variations in our reactions to each other, and to what is happening within each person. Our reactions to others and to ourselves are not uniform, and often rely on context.

Imagine a people who articulated illness in terms of fixed rules; the behaviour of such a people would form simple patterns. Suppose,

  • The people maintain that the ill person always continues normal social roles the person takes for the duration of the illness
  • Normal role performance and responsibilities are continued so that the ill person can ‘battle through them’
  • The strength of this continuation never varies directly with the severity of the illness

The lives of such a people would be very different from our own, and how we would relate to them is unclear. A concept of illness governed by definite rules would be unable to cope with the variation, which for us, is the essence of life itself.

Parallel to the indefiniteness of the concept ‘illness’ in everyday life, is the indefiniteness of the diagnostic process. Physicians slowly move toward closure of diagnostic possibilities through testing and analysis, and through a ‘rule-out’ mentality, which may lead to a diagnosis. Diagnosis is uncertain. There are no fixed rules in medicine stipulating what counts as sufficient information to make a diagnosis. This overlaps with the uncertainty that characterises our judgements about what others are thinking, feeling, and experiencing.

By its nature, diagnosing illness is about managing indefiniteness: it attempts to reduce the level of diagnostic uncertainty enough to make optimal therapeutic decisions.

Intolerance to diagnostic uncertainty has negative implications in general practice, on patients, and the healthcare system. General practitioners who cope well with uncertainty are more likely to support shared decision-making. By attempting to achieve absolute certainty through a ‘correct diagnosis’, premature closure may occur in the decision-making process, thereby allowing hidden assumptions and unconscious biases to have more weight than they should, with increased potential for diagnostic error.

The indefiniteness of illness does not reflect the inadequacy of our language, but the complexity that characterises human life.

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?

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.

“Pain and perception” – some questions and answers

Argument:

Imagine I see a white rose. The rose is white, not my seeing of it. Right? To think my seeing of the rose is white is to confuse what is perceived, with my perceiving of it. It’s a category mistake.

Now, compare: ‘I feel a burning pain’. To think my feeling of the pain is what burns is, again, to confuse what is perceived, with my perceiving of it.

The pain is what burns, not the feeling of it. Therefore, pain is not a perception.


Question: Whether the pain ‘burns’ or not is down to the perception of the person feeling the pain. It could just as easily be perceived as a ‘stinging’ sensation, a ‘grazing’ sensation, or any other way they wish to describe it. Just because something feels like a burn, doesn’t mean it is, and doesn’t mean it should be treated as such.

Reply: Let me try a different tack: how do you know that you have a pain? Suppose you say, ‘I know I have a pain because I feel (perceive) it’. Makes sense. But ‘I feel it’ means the same as ‘I have it’. Feeling a pain is having a pain. Therefore, ‘I know I am in pain because I feel it’ says no more than ‘I know I have a pain because I have a pain’, which doesn’t explain how you know that you have a pain.

I am arguing that knowledge of pain is not a form of perceptual knowledge (unlike perceiving a white rose). Again: When I feel a pain, there are not two things involved: the pain, and my feeling the pain. There is just the pain. Therefore, pain is not a perception.


Question: Your pain is the perception of it. That is how it works. If you don’t perceive it, it isn’t there. Our reality is constructed from our perceptions and doesn’t exist with them. There is no notion of pain without our perception of it. Pain does not exist independently of our perception of it so I’m not sure what you’re referring to when you say ‘just the pain’.

Reply: I am arguing that pain is not analogous to perceiving a white rose, or to perception of any object in the external environment. Pain is not an ‘object’. Not so long ago, pain was widely identified with the noxious stimulus. Nowadays, some researchers identify pain with a neural activation pattern. Failure to verify pathology can lead to some patients with pain being stigmatised by HCPs.

When I perceive a white rose, there is the rose, and my perceiving it. But ‘pain perception’ is not like this, because feeling a pain is just having a pain (and vice versa). To say that ‘I know I am in pain because I feel it’ just says ‘I know I have a pain because I have a pain’, which doesn’t explain how you know that you have a pain (compare ‘How do you know that you see a rose?’).

The phrase ‘pain perception’ obscures this difference, and understanding this point can help us be a little clearer about the ‘meaning’ of pain.


Question: But aren’t there two (or more things) involved? Say you get a paper cut. There is the cut, with mechanical and chemical nociceptors sending signals to the CNS, and your brain’s perception of the cut and those signals. Your brain perceives a threat and creates pain. There is a rose, and your brain’s perception of the light reflecting off the rose into your eyes, and your brain creates “white”.

Reply: Nice observation! But, my argument doesn’t rely on knowledge of mechanism, but personal experience. That doesn’t limit the clinical relevance of the argument, since clinical decisions are often based on scientific knowledge and personal understanding (‘prior experience’, ‘intuition’, ‘gut feelings’).

Pain and perception – clarifying the concepts

Is it accurate to say that you have a pain in your left foot because you feel – perceive – the pain there? Is pain a perception?

Many publications in the scientific pain field say so; e.g.:

“Pain is a complex, multidimensional perception that varies in quality, strength, duration, location, and unpleasantness.”

“The role of the cortex in human pain perception remained controversial until the advent of non-invasive brain imaging technologies. Over the last fifteen years solid evidence was generated indicating that multiple cortical and subcortical structures are involved in human pain perception. The general assumption from the studies performed in healthy subjects and studying primarily pain after acute, experimental stimuli, is the notion that activation of a fixed set of brain structures evoke this percept…”

Pain is a perception, not a sensation – Mick Thacker – One Thing

The way the sky looks is blue. The colour blue, however, is not an experience. Rather, it is a property of material phenomena. In this case, a property of the sky.

Experiences can be of a blue object, or the colour blue; but to think that experiences can be blue is like thinking that the number two is blue, which is a category mistake.

To make the same point with different examples:
– The white rose I see is white, not my seeing of it.
– The tightness of my new shoes is not tight, the shoes are.
– The bang I hear is loud, not my hearing of it.

The same logic applied to pain experiences:
– The pain I feel is piercing, not my feeling it.
– The burning of my pain does not burn, the pain does.
– The pain I sense is intrusive, not my sensing of it.

I think the view of pain as a perception makes a category mistake: it confuses what is perceived (‘The sky looks blue’; ‘The pain burns’), with a perceiving of it (‘I see the blue sky’; ‘I feel a burning pain’).

The pain is what is painful, not the feeling of it. Therefore, pain is not a perception.

Pain is a material phenomenon of a living organism, a phenomenon characterised by a complex array of distinctive responses and reactions.

Historically, it is correct to deny that pain is a sensation in opposition to the traditional Specificity Theory of Pain. In clinical settings nowadays, it is more accurate to call pain an ‘experience’: “An unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage.”

Following Wittgenstein, I propose that to feel pain is to have pain – not to feel pain and, in addition, to perceive it. When I feel a pain, there are not two things involved: the pain, and my feeling the pain. Feeling pain is just being in pain.

The meaning of coping with chronic pain – video presentation recording

Presented at the International Network for Research into Psychosocial Adjustment to Long-term Conditions (INRePALC)

1st International Online Networking Event
13th–17th September, 2021

Session Description: Let’s discuss what it means to cope with chronic pain – this is not a data presentation. Instead, I attempt to create a sense of enquiry and self-reflection on how to take the meaning of coping with chronic pain and apply it in the clinic. Thinking about what we do, and what the doing represents in the clinic, can be rewarding.

The meaning of coping with chronic pain

Presented at the International Network for Research into Psychosocial Adjustment to Long-term Conditions (INRePALC)

1st International Online Networking Event
13th–17th September, 2021

Session Description: Let’s discuss what it means to cope with chronic pain – this is not a data presentation. Instead, I attempt to create a sense of enquiry and self-reflection on how to take the meaning of coping with chronic pain and apply it in the clinic. Thinking about what we do, and what the doing represents in the clinic, can be rewarding.

View here.