Pain – the backdrop of our lives
Ella Rhodes reports from a conference at UCL.
02 August 2016
A truly unique conference, which set out to explore alternative ways of communicating, sharing and assessing suffering, was held at University College London. Encountering Pain emerged after a three-year interdisciplinary project at UCL called ‘Pain: Speaking the Threshold’ which assessed the value of images and image-making processes to the management of chronic pain.
I was there for the first day of the conference, which truly put clinicians, patients and academics on the same level and opened up fascinating discussions. Pain: Speaking the Threshold drew on a previous project Face 2 Face, a collaboration between artist Deborah Padfield and facial pain consultant Professor Joanna Zakrzewska and patients and staff from University College London Hospitals (UCLH). It focused mainly on facial pain but also explored the impact of visual images on medical dialogue in more detail.
During Face 2 Face, sufferers worked with Deborah Padfield to co-create images of pain, which were subsequently piloted by other patients in NHS clinics. The conference was a chance to share the results with patients and clinicians involved in the study, to hear the testimonies firsthand of those who co-created the photo cards, based on their experience of pain, and to bring together high-profile medical professionals, psychologists, a linguist, historian and neurobiologists to speak about pain and the projects alongside poetry, dance and performances.
Professor Zakrzewska (UCLH), a doctor with a specialism in facial pain, explained that pain could often be difficult to express using language alone, and with 14 million people in the UK suffering from chronic pain it was an important area to address. The photo cards created during Face 2 Face feature visual metaphors, such as an electrical wire sparking or a leg with a heavy weight tied to it, giving patients a new way to explain their pain to medical professionals. Zakrzewska explained that the images encourage the exploration of different aspects of pain between patients and the person listening to their story.
Padfield said she was initially encouraged to use art to express her own pain by her GP and subsequently wanted to assess whether this approach could be helpful to other patients. She said, after meeting pain specialists, and in particular talking to her own pain specialist, Dr Charles Pither, then Medical Director of Input Pain Management Unit, St Thomas’ Hospital, she discovered pain’s incommunicability was as frustrating for clinicians as it was for patients. Its invisibility and subjectivity make it a difficult thing to capture using objective measures, she added.
In an earlier project, Perceptions of Pain, Padfield collaborated with Pither, where she co-created with patients photos that represented their unique experiences of pain. In 2004 they carried out a feasibility study to see if these images could benefit other patients, and the feedback received encouraged her to look further into the role of images in patient–clinician communication.
This developed during the subsequent collaboration with Zakrzewska, Face 2 Face, which additionally explored patient experiences of facial pain. This kind of pain presents another problem. ‘Our faces’, Padfield said, ‘are often the canvases we use to express pain, but when the face itself is in constant pain these feelings become harder to express in a way which others can read.’ One of the strands of this project involved workshops for clinicians and patients to attend together at both UCLH and the National Portrait Gallery to encourage them to share their experiences outside a clinical context.
Padfield worked with facial pain patients to co-create pain photos. A group of these were integrated with a selection of those from Perceptions of Pain, compiled into a pack of 54 laminated cards and tested out in real consultations, which were filmed. Ten different healthcare professionals from the pain management teams at UCLH offered to have their consultations filmed. The clinicians saw two patients each without images and two new patients with images, both groups under the same conditions. The filmed consultations and post-consultation questionnaires made up a unique body of material that was analysed during the recent Pain: Speaking the Threshold project by experts from different disciplines.
Professor Elena Semino, Head of Linguistics at Lancaster University, analysed these consultations and compared those in which the photos were used and those where they weren’t. She assessed the kinds of language used in the consultations and whether the photos changed the amount of speech used by doctors compared to patients. She found that patients spoke much more than clinicians in consultations where the photos were used. In these consultations patients also described their pain in metaphorical terms. Patients using the photos spoke frequently about their sense of self being worn down due to pain and also disclosed emotional narratives and suicidal feelings. Semino said the photos seemed to encourage people to speak in similes, and from that point more information emerged.
Semino concluded that the use of photos allowed a patient to speak about pain differently as well as increasing references to thoughts and feelings, as well as making it more likely for patients to make personal disclosures, such as suicidal thoughts.
Clinical Health Psychologist Dr Amanda C de C Williams (UCL) steered the audience through an analysis of the non-verbal interactions in the filmed consultations. She said pain was an area of particular interest due to the subjective nature of our experience of it; people bring their own individuality and social role to pain whether as a patient or observer. She found little difference between the general ratings, by both clinicians and patients, about the quality of the consultations as whole; overall these were uniformly quite high. It did emerge, however, that the images seemed to impact on the non-verbal behaviour and in particular more on clinician than patient behaviour.
Williams took a sample of one minute out of every five minutes of each consultation, which were rated by two observers for behaviours around rapport, affiliation, dominance and submission. They saw that patients showed roughly the same level of affiliation whether using images or not, while clinicians showed more positive affiliation when using the images. It appeared patient and clinician behaviour was more attuned in the with-image condition.
After a beautiful dance performance by Anusha Subramanyam, based on the patient experiences used in the project, came a fascinating keynote by Professor Rita Charon (founder and Executive Director of the Program in Narrative Medicine at Columbia and Professor of Medicine at CUMC, New York) on narrative medicine and the talk of pain. Charon coined the term ‘narrative medicine’ pioneering a new field. Facial-pain sufferers Liz Aldous and Ann Eastman also shared their moving experiences of being involved with the Face 2 Face project and creating images of their own pain, which have since been used by other patients.
Professor Christopher Eccleston (University of Bath) opened his keynote speech on embodied experiences by suggesting pain was a ‘fundamental psychological experience’, adding: ‘You were born in pain, likely you’ll die in pain, significant episodes of your life can be in the context of pain. Pain is the backdrop of our lives, but although it’s ever-present and we live in a form of collective denial. We try to pretend it doesn’t exist.’
He said that many psychologists see the body simply as a taxi for the mind, and in trying to apply psychology to pain many see it through the lens of abnormal psychology. However, Eccleston said, this does not always ‘fit’ with a person’s experience, as those suffering with chronic pain are usually not psychologically disordered in any way.
Eccleston described himself as a ‘normal’ psychologist, interested in the everyday and usual. He asked whether there was another way to look at pain aside from thinking about mental states or observed behaviour, he said potentially it sits where it can’t be pinned down – between mind and action.
Although individual experiences shouldn’t be trivialised, Eccleston added, the only time pain can be seen as abnormal is when it doesn’t go away. He said what had fascinated him most about patients was that they were successful in many aspects of life but somehow pain would disassemble them. He added: ‘The only way we’ll understand the experience they have of pain is to apply normal not abnormal psychology.’
He asked how we could build a non-judgemental, enabling psychology around pain. Eccleston said that much psychology suggests that chronic-pain patients are fear-avoidant, but he added: ‘Most of the people I have met have courageous engagement, they’re not passive at all. I am not denying their suffering, but people are actively fighting for a way out or a solution.’
We should put the body back into psychology, he concluded, and encourage people to have liberating narratives, and provide treatments that allow them to restructure their own experiences. He said: ‘We can have a positive psychology that allows us to recognise what pain is about – being active, engaged and searching.’
The second day saw talks from Professor Joanna Bourke, Dr Preeti Doshi, Professor Maria Fitzgerald, and more.
- Read more in our June 2011 special issue on pain.