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.

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.

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.