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.