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Why using the terminology of ‘pain catastrophising’ can be harmful

Patients experiencing chronic pain think the term belittles how they are affected

Patients experiencing chronic pain think the term belittles how they are affected

  • Chronic pain can adversely affect every aspect of someones life, including sleep and the ability to work
  • Increasing numbers of clinicians believe labelling someone a catastrophiser drives anxiety and can inhibit function
  • Stanford University School of Medicine is leading a global project to find terminology that is respectful and constructive
Picture: iStock

Living with chronic pain can cast a long shadow over someones life, with the distress felt by some historically labelled by clinicians as pain catastrophising.

Its probably the most unhelpful term we use to describe patients, says nurse Felicia Cox , former chair of the RCN pain and palliative

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Patients experiencing chronic pain think the term belittles how they are affected

  • Chronic pain can adversely affect every aspect of someone’s life, including sleep and the ability to work
  • Increasing numbers of clinicians believe labelling someone a catastrophiser drives anxiety and can inhibit function
  • Stanford University School of Medicine is leading a global project to find terminology that is respectful and constructive
Picture: iStock

Living with chronic pain can cast a long shadow over someone’s life, with the distress felt by some historically labelled by clinicians as ‘pain catastrophising’.

‘It’s probably the most unhelpful term we use to describe patients,’ says nurse Felicia Cox, former chair of the RCN pain and palliative care forum.

A viscous circle of anxiety, depression and pain

‘It’s highly negative. It’s similar to saying to someone “man up”. No patients have anything positive to say about it.

‘People living with pain would like to see it eliminated.’

Felicia Cox: ‘Describing someone as
catastrophiser drives their anxiety’

First identified in the late 1970s and early 1980s, the term pain catastrophisation tends to be used by healthcare professionals when someone with persistent pain is fixated with it, to the exclusion of almost everything else.

‘For example, pain stops the person sleeping, or having the ability to work and they are scared it means something serious is going to happen to them,’ explains Ms Cox, who is pain management lead nurse and head of pain services at Royal Brompton and Harefield NHS Foundation Trust in London.

An overarching aspect is patients tending towards feelings of hopelessness.

‘They think that nothing will ever help them,’ says Ms Cox. ‘How someone feels about their pain leads to increased disability. We know there is also a strong association between anxiety, depression and pain catastrophising. It can become a vicious circle.’

She believes that when nurses or other healthcare professionals use the term pain catastrophisation, it negatively influences how they assess that individual’s pain and any strategies they recommend for self-management.

‘It’s that fundamental,’ says Ms Cox. ‘If you describe someone as a pain catastrophiser, it only drives their anxiety and unhelpful thoughts, inhibiting function.’

Now, increasing numbers of clinicians believe the terminology is so harmful it is time for change. A worldwide project involving healthcare professionals and patients is searching for consensus on new terminology.

Beth Darnall: ‘The aim is to find
a respectful term’

A project to find an alternative term

In reality, patients with chronic pain who have encountered the term pain catastrophisation are most likely to have done so via the press or social media.

‘And for many, this term is experienced as pejorative,’ says Beth Darnall, an associate professor at Stanford University School of Medicine in the United States. ‘Some individuals have a negative response and it can contribute to them feeling judged or their pain invalidated by the medical system, which clearly is not helpful.’

Now she is helping to spearhead the global project to find new terminology.

‘We hope to arrive at a term that does not alienate the public and current and future patients,’ says Dr Darnall.

‘The aim is to find something for public use that is respectful and broadly acceptable to stakeholders.’

Current language may even negatively influence patients’ willingness to engage in certain types of pain treatment, she believes.

Dr Darnall says the term was never intended for clinical care or public use, but it is now being used to communicate pain science in a variety of media, all consumed by the public and patients.

‘For this reason, there is a need to update the language we use in public communications to ensure patients feel respected,’ she adds.

‘There was an assumption you were exaggerating, and were a drama queen’

Louise Trewern: Believing patients’ own
accounts is crucial

While pain catastrophisation was never spoken about directly to patient Louise Trewern, she felt it implicit in her experience of treatment for chronic pain.

‘It wasn’t used to my face but I dare say they did behind closed doors because I was a difficult case,’ she says. ‘Clinicians think we catastrophise because what we’re saying sounds so unbelievable.’

Believing patients’ own accounts of their pain is crucial, says Ms Trewern, who advises various bodies on pain management from the patient perspective, including the British Pain Society and the Physiotherapy Pain Association.

‘Not being believed makes you feel a little bit as if you’re going off your head, especially when it happens time and time again,’ she says. ‘You think, these people aren’t stupid, so perhaps it’s me. You feel that healthcare professionals are experts, so you don’t question.’

‘If it had been explained back then how pain works and how you can make a difference yourself, I would never have started taking the drugs’

Louise Trewern, patient

Ms Trewern has lived with pain from fibromyalgia and osteoarthritis for much of her life. When it worsened, she was prescribed opiates, which worked well at the beginning, allowing her to carry on with her life.

After several years she began to deteriorate with what she later discovered were the side-effects of long-term opiate use. She had two emergency admissions to hospital for opioid-induced impaction.

Alternative ways to manage pain

Eventually Ms Trewern was referred to a clinical nurse specialist at a pain clinic, who suggested that many of her health problems were being created by the medication she had been taking for more than 13 years and recommended she cut down and then stop.

Ms Trewern uses exercise to help manage
her pain

Today she manages her pain by walking up to six miles a day.

‘I still live with the pain but it’s nowhere near as bad as it was. As long as I keep active, it’s controllable,’ says Ms Trewern, who now takes no painkillers on a regular basis.

Looking back, she feels not enough attention was paid to her pain, and that ways of managing it other than pharmacological should have been explored.

‘Things are beginning to change, but there was an assumption that you were exaggerating – a bit of a drama queen – and it’s not as bad as you’re saying, you just need to get a grip,’ says Ms Trewern.

‘They don’t say it out loud, but that’s the impression you get from healthcare professionals a lot of the time.’

Patients should be able to access pain education and management programmes before drugs are prescribed, she says.

‘If it had been explained back then how pain works and how you can make a difference yourself, I would never have started taking the drugs,’ says Ms Trewern.

Use of language can affect how patients engage in some types of pain treatment Picture: iStock

Getting the opinions of healthcare professionals and stakeholders

So far, surveys targeted at either healthcare professionals and researchers, or patients and caregivers, have elicited around 5,000 responses to the Stanford renaming project from people in 46 countries. The surveys include the option to choose some alternative suggestions, such as ‘negative pain mindset’, ‘pain-related fear’ and ‘pain-specific distress’. Participants can also suggest their own ideas.

Ms Cox, who is a study collaborator on the Rename Pain Catastrophizing project, says: ‘Although I don’t want to pre-empt the results of the survey, at the moment it seems the consensus is ‘pain-related worry’. It has fewer negative connotations and covers the distress, concerns and anxieties of those living with persistent pain.’

A final survey will be distributed this autumn. ‘We anticipate this will include just a few choices that are vetted by an expert team of pain psychologists, patients, family members and other professional stakeholders,’ says Dr Darnall.

Advice for nurses caring for patients with chronic pain

Maintaining a good relationship with
patients is important Picture: iStock
  • Never use the term ‘pain catastrophisation’ with patients or services users, advises Beth Darnall, associate professor at Stanford University School of Medicine. ‘Very few clinicians use this term with patients and that’s a good thing,’ she says
  • Learn to recognise the signs of pain-related distress and worry These include someone constantly ruminating on their pain, worrying something bad is going to happen to them, or feeling helpless in managing their pain
  • Be honest with your patients and tell them there is nothing you can prescribe that will cure their pain, says patient Louise Trewern. ‘Instead, say you can help to find ways of managing it. This is a much better approach.’ Interventions may include pain management programmes, various therapies, specialist clinics or social prescribing involving physical activities
  • Acknowledge and validate your patient’s pain, says Dr Darnall
  • Do not break your relationship with the patient ‘Keep seeing them, acknowledging their pain is real, and that you’re there to help them,’ says Ms Trewern
  • Help your patients describe their worries about pain The charity Pain Concern has designed a short form that helps individuals share their thoughts, focusing on diagnosis and cure, feelings, life changes and medications. ‘We’re using this in our clinic and it’s helpful,’ says pain management lead nurse Felicia Cox. ‘It’s a neutral way of getting patients to tell us how their pain impacts on them’
  • Remember that pain is an individual experience, influenced by a variety of factors, including the patient’s history, previous pain experience, and how responsive their physiology is to a perceived threat, including pain, says Dr Darnall
  • Use function rather than numbers to assess someone’s pain, Ms Cox recommends. ‘We’re moving away from using a numerical or categorical rating,’ she says. Instead look at what the person can do

Developing ways to manage chronic pain

While the Stanford project seeks a new name, there’s a recognition that what it describes continues to exist, with the level of pain-specific distress changing how pain is processed in someone’s central nervous system.

Research, including a 2017 study of women with chronic back pain, shows that when an individual focuses on their pain and feelings of helplessness, their pain intensifies.

Current ways of managing chronic pain rely far less on pharmacological interventions than in the past.

‘Medicine rarely helps people living with persistent pain and there is only limited use for opiates. Few patients will get any functional benefit,’ says Ms Cox.

Non-pharmacological treatments include CBT and mindfulness-based meditation may help
reduce the distress the individual feels Picture: iStock

Instead, patients are being increasingly encouraged to self-manage, with help from a range of experts, including psychologists and pain specialists.

‘This includes addressing feelings about their pain and trying not to let it interfere with what they want to do in their life, reframing some unhelpful thoughts,’ explains Ms Cox.

Treatments may include a combination of cognitive behavioural therapy (CBT), acceptance and commitment therapy for chronic pain (a variation of CBT), mindfulness-based meditation, biofeedback, which uses sensors to gain greater awareness and control of physiological functions, and hypnosis.

‘One size doesn’t fit all, but there will be something that works,’ Ms Cox says.

A new definition of pain

In July 2020, the International Association for the Study of Pain (IASP) announced a new definition of pain – the first in more than 40 years.

Picture: iStock

Developed by a multidisciplinary, multinational task force, the new definition is the result of a two-year process that IASP hopes will better convey pain’s nuances and complexity, leading to revised ways of assessing someone’s pain. It includes input from those in pain and their caregivers.

The new definition states that pain is ‘an unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage’.

A central change is replacing terminology that relies on someone’s ability to describe the experience for it to qualify as pain. This was deemed as excluding infants, some older people and other groups.

Six notes accompany the new definition:

  • Pain is always a personal experience that is influenced to varying degrees by biological, psychological and social factors
  • Pain and nociception are different phenomena. Pain cannot be inferred solely from activity in sensory neurons
  • Through their life experiences, individuals learn the concept of pain
  • A person’s report of an experience as pain should be respected
  • Although pain usually serves an adaptive role, it may have adverse effects on function and social and psychological well-being
  • Verbal description is only one of several behaviours to express pain; inability to communicate does not negate the possibility that a human or a nonhuman animal experiences pain

Lynne Pearce is a health journalist


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