For many of us pain is something fleeting which lasts as long as it takes to fix the precipitating illness or injury (think of stubbed toes, broken limbs, toothache and so on). In other words, most of the time pain is something we experience, but know that it will be transient because the thing which caused it is fixable. For increasing numbers of the population though, the experience is very different; pain is an unwelcome visitor who refuses to leave. Indeed, Eccleston et al. (1997: 700) noted that: âIn chronic pain , the suffering spills over into all aspects of life. Its senselessness offers a fundamental threat to meaning and identity creating the urge and desire for meaning to be found.â Such pain is not fixable. It is long term. Chronic. Persistent. In fact the term âpersistentâ is increasingly being used in place of the word âchronicâ to describe long-term pain. The British Pain Society (2013) defines chronic, long-term pain as being
pain beyond the time that tissue healing would normally be expected; taken as beyond three months . (British Pain Society 2013: 6)
So, What Is It Like to Live With Persistent Pain?
Knowing how persistent pain is defined (British Pain Society 2013) is informative but does not tell us what it is like to live with persistent pain. A graphic description of the experience of living with persistent pain was shared in a paper by Chris Eccleston and his team (2013) who described it as being a
prolonged experience of an immiserating and disabling disease . (Eccleston et al. 2013: 59)
The word âimmiserateâ was new to me and I had to look it up. It means to make miserable, to impoverish. When you learn that those who live with persistent pain typically have multiple and overlapping problems including anxiety, sleep problems, disability, isolation, reductions in their social and financial capital, loss of job, relationship problems and so on, immiserate seems a very apt word to use. With this in mind, it is perhaps not surprising that the complexity of the persistent pain experience is so testing that it can âteach one about oneâs own forbearance, resilience, and tolerance of threatâ (Eccleston et al. 2013: 59).
So not only is persistent pain very difficult to live with, pain itself is such a hard thing to describe. Words just donât do it justice. This is tricky because persistent pain is often not visible and the only person who knows what the pain is like is the person who is experiencing the pain. As long ago as 1968, McCaffery said that pain is âwhatever the experiencing person says it is, existing whenever the experiencing person says it doesâ (McCaffery 1968: 95). This is an entirely reasonable statement. The trouble is though, that whenever there is something which cannot be objectively measured, as human beings we can be quite suspicious and as a consequence, we do not always trust those who are telling us about it. We might suspect that they are exaggerating, or that they are imagining their pain.
But if we remember the McCaffery quote that pain is whatever the person in pain says it is, surely we should trust the person in pain. However, the slippery nature of trying to work with something as subjective as pain can lead to mistrust. For example, Bernhofer (2011: 1) notes that: âPractitioners who would likely not judge the character of a patient who needs increased amounts of medication to treat hypertension; [âŚ] may believe that a patient whose persistent pain does not respond to standard medications is âdrug-seeking,â a narcotic abuser, or has a current need to âescape realityâ.â This speculation has been supported by other researchers exploring the experience of the person living with pain. For example, it has been reported that people living with persistent pain say they have been affected by the attitude of healthcare staff. They may feel that they are being told that their pain is psychological or that they are being labelled as a âdifficult patientâ. They struggle with the âinvisibilityâ of their condition and with the absence of straightforward therapeutic options (Dow et al. 2012).
If We Canât Rely on What People Say, How Then Do We Measure Pain?
Since asking people to describe their pain is not deemed reliable, we have also tried to develop ways of measuring pain objectively. However, the trouble is that measuring such a multifaceted, complex, subjective and internal experience is not straightforward (Williams et al. 2000). This presents us with a perplexing problem, not least because without an accurate valid and reliable measure of chronic pain , we wonât know how much pain a person is in and we cannot evaluate the impact and effectiveness of the pain interventions we design.
Typically, âobjectiveâ measures of pain have taken the form of rating scales which invite the patient to rate how bad their pain is on a scale of 1 to 10, where 10 is the worst pain imaginable. At face value, this seems a reasonable question. However, choosing a score to show how bad your pain is, is not as easy as it first sounds. This is because scales are designed to measure pain intensity, but intensity is just one aspect of the pain experience.
Ronald Melzack in a âthink-pieceâ published in 2005 looked back on the process he went through as he explored new approaches to the way in which pain was described and measured (Melzack and Torgerson 1971). His work led to the development of the McGill Pain Questionnaire known as the MPQ (Melzack 1975). Sparked by a conversation he had in a pain clinic in the early 1950s with Mrs Hull (someone he described as an âimpish, delightful woman in her mid-70sâ (Melzack 2005: 201), he took note of how she described the pain she was experiencing following amputation of her diabetic-related gangrenous foot. He noted down the specific words she used. Over time as he met and worked with more and more people living with pain, he added to his list of words. He explored his ideas with lots of other people, all of whom are described in the 2005 think-piece, and eventually identified four key ways of describing pain: sensory, affective, evaluative and miscellaneous. These key elements became the MPQ which remains popular today as a means of measuring pain.
Similarly, decades later, Yorkston et al. (2010) suggested that the chronic pain experience was both multidimensional and individual and as such, they argued that pain rating scales were not likely to be appropriate. They put forward the idea that at least five dimensions needed to be considered when attempting to capture the experience of pain. These included:
- pain intensity (how much it hurts)
- pain quality (type of pain)
- pain location (where it is)
- pain interference (impact on life) and
- temporal aspects (frequency, duration, predictability).
So, if we ask people to rate their pain on a scale from 1 to 10, how do we know what the number they have chosen means? Which of the different pain dimensions is a patient reporting on? Are they scoring the intensity? Or the quality? Or the interference? Or maybe a combination of elements? Existing pain rating scales therefore oversimplify a complex experience, ignore variation in key features of the pain experience (e.g. Clark et al. 2002; Turk and Okifuji 1999; Williams et al. 2000) and mean that we can lose a lot of contextual information (Craig 2009).
In an attempt to further understand the complexity of pain, Kenny et al. (2006: 213) explored whether people had a shared understanding of the meaning of pain descriptors. This is important because âa patientâs attempt to communicate pain may not succeed when patient and physician have different languages and frames of referenceâ. Kenny et al. (2006) compared how people from a non-clinical sample used words and numbers to rate pain. They were asked to describe the worst pain they had ever experienced and then to rate this on a Visual Analogue Scale (VAS). They were also asked to create a Verbal Rating Scale (VRS). They were given 15 pain descriptors listed alphabetically. Then they were asked to choose the word they believed described the...