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A slippery surface… can photographic images of pain improve communication in pain consultations?
International Journal of Surgery 8 (2010) 144–150
Contents lists available at ScienceDirect
International Journal of Surgery journal homepage: www.theijs.com
A slippery surface. can photographic images of pain improve communication in pain consultations? Deborah Padfield a, b, *, Farah Janmohamed c, Joanna M. Zakrzewska b, Charles Pither d, Brian Hurwitz e a
Slade School of Fine Art, University College London, Gower Street, London WC1E 6BT, UK University College London Hospitals NHS Foundation Trust, Department of Oral Medicine, Eastman Dental Hospital, 256 Gray’s Inn Road, London WC1X 8LD, UK c Barts & the London NHS Trust, The Royal London Hospital, Whitechapel, London E1 1BB, UK d The RealHealth Institute, 23-31 Beavor Lane, London W6 9AR, UK e King’s College London, Strand, London WC2R 2LS, UK b
a r t i c l e i n f o
a b s t r a c t
Article history: Received 11 August 2009 Received in revised form 7 October 2009 Accepted 28 November 2009 Available online 9 January 2010
Aim: To ascertain the influence of images depicting different qualities of pain on unselected outpatient pain clinic consultations. Methods: A resource of 64 colour images depicting different qualities of pain was given to patients in clinic waiting rooms, which they could take into consultations and use as a focus for discussion with clinicians. A questionnaire enquiring into the value of such images was completed at the end of each consultation separately and anonymously by clinicians and patients. The questionnaires carried identifiers that allowed pairing in the analysis, which was undertaken qualitatively and thematically. Results: Forty-four percent (20/45) of Pain Clinics declaring an interest in taking part in the study returned 64/80 (80%) pairs of questionnaires. Eighty-six percent (54) of patients related their pain to at least one image during their consultation and 67% found discussion of the images facilitated dialogue. Eighty two percent of clinicians reported improved communication as a result of the images with 78% reporting degrees of greater understanding of patients’ pain. The four main themes identified in analysis of questionnaire data included: a broadening of verbal dialogue; a sense of improved clinician-patient relationship; limitations of setting (time); a variety of practical benefits for future use. The most prominent effect was that the images appeared to encourage discussion of the affective elements of the pain experience. Conclusion: The results suggest that introducing a focus of images of pain into unselected pain consultations can facilitate discussion and lead to more fruitful dialogue between patients and clinicians. Ó 2009 Published by Elsevier Ltd on behalf of Surgical Associates Ltd.
Keywords: Pain Photography Art Doctor-patient communication Visual
1. Background The task of physicians and surgeons is to correct or repair the damage. But, recognizing the intrinsically personal nature of pain and suffering, the doctors’ remit equally embraces the self.1 Pain is one of the commonest symptoms reported to doctors yet ineffective communication is a continuing challenge and remains a barrier to adequate assessment, understanding and treatment.2,3 Modern concepts of pain have moved from the elusive simplicity of a pathophysiologic lesion that represents the ‘seat’ of a pain, towards a complex neural and cortical process that is now frequently thought to ‘explain’ pain, including its cognitive and affective elements. With
* Corresponding author at: Slade School of Fine Art, University College London, Gower Street, London WC1E 6BT, UK. Tel.: þ44 07812 987 555. E-mail address: d.padfi[email protected] (D. Padfield).
this has come the realisation that the physician’s and surgeon’s roles have moved from excision or complete cure, to management, palliation and enabling some healing of the self. As a result of this paradigm shift it is self evident that effective communication is essential for success, but surveys leave no room for complacency about how well this takes place in pain clinics.4,5 A chasm exists between the subjective experience of pain and its objective measurement on a wide variety of validated scales. Most measures are language based, such as the McGill Questionnaire and verbal rating scale, while verbal metaphors remain formulaic, offering the individual little opportunity to express how they feel, or to contextualise the symptoms within a personal narrative. Furthermore, a well-documented stasis exists in many pain consultations as a result of physicians and patients searching for different meanings denoted by symptoms and wishing to protect different agendas.6 The physical, metaphoric and linguistic space in which pain consultations take place can therefore be fraught with
1743-9191/$ – see front matter Ó 2009 Published by Elsevier Ltd on behalf of Surgical Associates Ltd. doi:10.1016/j.ijsu.2009.11.014
D. Padfield et al. / International Journal of Surgery 8 (2010) 144–150
a sense of impasse, albeit seldom explicitly acknowledged during the encounter, as many of the images made during the original project suggest, Fig. 1.
145
But in the late 20th C this use gave way to forms of photoelicitation and phototherapy pioneered by artists, such as Jo Spence and Rosy Martin, who used the construction of photographs to revisit and transform past experiences, including illness experiences.12 Jo Spence’s work affirms the power of photography to return a sense of control to the patient-photographer over their illness and how that illness is represented to others. Versions of phototherapy have evolved since in various arenas of human suffering. Recent studies such as ‘‘Photo-voice’’ a technique researched by Wang, Ling & Ling, involves participants in producing and analysing images themselves or collectively with another professional,13 Thoutenhoofd studied the use of photographs to explore Deaf People’s worlds, terming it ‘autophotography’,14 and much research has been done into the usefulness of children’s drawings for diagnosing pain; pain charts and scales being developed using pictures or numbers, to describe their pain and/or drawings of pain.15,16 However, the study reported here is the first study we know of in which photographs have been used within pain consultations to help in understanding the subjective experience of pain, with a view to improving doctor-patient communication. 2. Methods
Fig. 1. Photograph by Deborah Padfield with Nell Keddie. From the series Perceptions of Pain, 2001–6.
One solution may lie in finding a language with the capacity to explore a patient’s experience of pain beyond the physiological, which could lessen the divide between the significance of the pain as experienced within the sufferer’s social and psychological schema, and the scientific world of current medical understanding of chronic pain. Kleinman describes the capacity to achieve some integration ‘between physiological, psychological and social meanings’ as core to patient complaints.4,7 Could a visual representation of individual pain provide a bridge between the self and the other? Could photographs depicting the personal experience of pain validate the subjective experience of it, so avoiding the need to prove pain’s existence, especially when there are no physical signs from it? Even in this digital age with our awareness of the ambivalence of the relationship between ‘photography’ and ‘reality’ we still ascribe an authenticity to that which is captured photographically, making it a particularly useful medium for recreating the reality of another. In 2001/02 visual artist and pain sufferer, Deborah Padfield, worked with pain specialist Charles Pither and chronic pain patients from St Thomas’ Hospital in London to co-create photographic images of pain, as a means of eliciting a different type of verbal dialogue in hospital about pain.8 Following reports by patients that the process and resulting images helped discussion of the nature and impact of pain on sufferers, a feasibility study was conducted to examine the effect of using pain images during consultations with unselected patients of pain clinics interested in participating in an evaluation. The social sciences have used photographs to help elicit narrative almost since their invention in the 19th C. Photographs have been seen as potentially revelatory in medicine ever since they were used in the 1850s by Dr Hugh Welch Diamond,9 the French neurologist Duchenne10 and by Jean-Martin Charcot, in the context of diagnosing and representing a variety of neurological problems, contentiously including hysteria.11
The study was advertised at the British Pain Society’s Annual Scientific meeting in 2004. Additional photographs were made with patients from Bradford Pain Rehabilitation Unit and Meltham Road Surgery, Huddersfield and integrated with the original set of photographs from St Thomas’ Hospital, to create a spiral bound resource of 64 images depicting different qualities of pain. Twenty pain clinics volunteered to use the visual resource during consultations and to provide feedback. The images were loosely grouped within 15 unmarked themes. Patients were given the resource of pain images prior to consultation and asked to select images which had some resonance for them, and to discuss these during the consultation if they wished. Feedback about the process was collected through written questionnaires independently completed by patients and clinicians and returned to the researchers in sealed envelopes. The patient and clinician questionnaires contained respectively 12 and 7 closed, and 9 and 5 open-ended questions. Ethics approval was obtained and all patients gave written informed consent. The photographs were not intended to be literal descriptors of every possible pain but covered a range of pain qualities, such as temperature, sensation and constrainment. The resource of images aimed to shift the consultation dialogue towards whatever patients needed to say. As projective instruments they bear a slight similarity to the Thematic Aperception Test (TAT), developed in 1935 by Murray and Morgan.17 They were not aimed though at reducing interpretations to diagnoses, but at promoting a collaborative exploration by patient and clinician that could uncover new information. A concurrent mixed methods approach was used to analyse the results, which was independently carried out by two people and then integrated. Quantitative and qualitative data were extracted, separately analysed and linked, where possible. 3. Results Forty-four percent (20/45) of pain clinics declaring an interest in the study returned 80% (64/80) of the pairs of questionnaires. Eighty two percent (n ¼ 52) of clinicians who returned questionnaires reported improved communication and 78% (n ¼ 50) reported greater understanding of patients’ pain experiences. Eighty-six percent of patients (n ¼ 54) related their
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D. Padfield et al. / International Journal of Surgery 8 (2010) 144–150
Fig. 2. Effects of use of images as perceived by the clinicians.
Fig. 3. Frequency of choice of pain character group (number of images in each group in brackets on vertical axis) from which images were selected by patients.
pain to at least one image and 67% (n ¼ 43) found discussion of the images facilitated dialogue and/or increased their belief that their clinicians had better understood their experience. Perceived positive and negative effects are summarised in Fig. 2. The pain character group from which images were most often selected was temperature, see Figs. 3–5. The images most frequently selected by patients in this study all depict something being done by an outside agent to a part of the body, with the controlling force outside the frame of the photograph as shown in Fig. 6. The qualitative analysis showed that there were four overall ways in which the photographs appear to have been helpful, which are designated as themes in the analysis. 1 Verbal dialogue was broadened as new information was obtained; it was reported that speedier access to information was gained; there was increased discussion of emotional components, and a change of focus to what the patient felt they needed to say as illustrated.
Added information; further dimension in communicating pain. Clinician CDD1 Fast understanding of the problem. Early identification of kind and nature of her pain. Clinician CK3 Made it more focussed and helped to share my experience of the pain very quickly. Patient PK1 I could express my emotional side too. Patient PF4 I expected stabby pains where in fact there was a bruised sense. Clinician CWW3 The images allowed the patient to express their sadness which I had previously construed as anger Clinician CFF4 Don’t like talking about myself – pictures made it easier, more precise to the point Patient PMM2 I have known this person for 10 months and never knew he had pain all the time Clinician COO3 More graphically demonstrated the emotional side Clinician CU1
D. Padfield et al. / International Journal of Surgery 8 (2010) 144–150
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2 Clinician-patient relationship was improved in that the patients’ experience was validated, a shared reference point was provided, and ‘‘ice-broken’’ as shown below. Very useful in opening a rapport with patient Clinician CU2 This patient obviously felt believed when he saw pictures that reflected his pain; his face lit up Clinician C004 Confirmed and validated experience of pain effectively Patient PE1 You realise other people feel the same. Very reassuring Patient PBB1 It diminishes feelings of isolation Patient PEEE2 Established common ground Clinician CK1 Seemed happy and at ease talking about his pain with the images Clinician COO1 Really good not only for explaining/interpreting pain, but also good for people who are not very articulate etc. Patient PMM3 3 Limitations of the image resource were identified in that it notably increased consultation time, sometimes deflected focus from ‘medical’ aspects, and the images did not cover every quality/character of pain as shown in the extracts.
Fig. 4. Photograph by Deborah Padfield with Linda Sinfield. From the series Perceptions of Pain, 2001–6.
Added to consultation length Clinician CDD2 Time leafing through book to demonstrate Clinician CCK2 Needed time to study them and not just glance over them Patient PPU1 Not all images relevant to individual Clinician CE1 May weaken spontaneous description ClinicianCEE2 They did not show my images in any of the images Patient PZZ4 Because the images were used with people with physical disabilities and learning difficulties we found the images in the book too small; these then had to be enlarged Clinician C003 4 Practical benefits and future potential were identified, such as decisions on future management, suggestions for future use and improved format as shown. It made me aware of their vulnerability. It reinforced my clinical view that the patient should receive counselling before further help should be offered for pain management Clinician CFFF4 I think we can use the bank in anger consultations as part of treatment Clinician CMM3
Fig. 5. Photograph by Deborah Padfield. From the series Perceptions of Pain, 2001–6.
Using the images made assessment easier Clinician CE2 Aided communication and treatment suggestions Clinician CE2 I thought the images were amazing and really helped me look closer at the kind of pain I am in Patient PWW1 This type of patient would not have been able to do a questionnaire, was nice to focus on pictures Clinician CCF3 Could be used by patients prior to attending clinic or physio Clinician CEEE2 The patient has difficulty reading and writing, he looked through many pictures for discussion. It gave me a better appreciation as he does not verbalise well. Clinician CF4
4. Discussion A message that emerges from these results is that the resource appeared useful in a variety of ways. Arguably it is the photograph’s potential to trigger memory and construct new and multiple realities for viewers that makes it an apposite medium in this sort of context. The writings of Barthes,18 Berger et al19 and others highlight the relationships between photography and memory, photography and language and conscious and unconscious experience20. In this small study, we found that photographic images did appear to bring some elements of pain experience out of unconscious and into more conscious dialogue and control.
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A recent study by Wiech et al21 concluded that changes in the emotional centres of the brain are able to alter the experience of pain enough to reduce suffering, which might explain why externalising and understanding emotional elements could dilute a pain’s intensity. Images at times acted as triggers to realisations:
I went into more depths about how I feel about my scars Patient PWW1 Enabled us to have an understanding that she felt a ‘‘fraud’’ Clinician CF1 In particular image 59 helped me to understand the patient’s view on medication Clinician CDD3
The images may have become in some sense ‘relational objects’ as described by Edwards,22 Bourriaud23 and Gell24,25 the process of viewing the photographs creating a collaborative narrative.
Fig. 6. Photograph by Deborah Padfield with Robert Ziman-Bright. From the series Perceptions of Pain, 2001–6.
The significance of images is highly individual but also influenced by gender, culture and religious viewpoints. It is in the collaborative process of discovering and dissecting these meanings that their significance to, and impact on, pain experience can emerge. Narrative meaning is mediated through language; and here language has itself been mediated through images. Negotiating between image and language affords status to both image and word and also to patient and clinician, encouraging a sharing of the roles of listener and speaker, helping to equalise the consulting space.
Made us both think/view differently Clinician CEEE2 Helped to share my experience of the pain very quickly Patient PK1 That although I would build on her language – ie. sharp, burning – I could use her picture to reinforce we were talking about the same pain Clinician CF3
Clinicians and patients both referred to the fact that the photographs allowed the emotional components of pain experiences to be addressed. This is not to suggest that chronic pain is psychological in origin, but that by the time it has become chronic, the picture may be so complex and a person’s life so altered that not to address affective elements is counter-productive.
I could see patterns in the pictures – thoughts of suicide, depression, self-harm, tension or stress PFFF4 Moved from discussing pain as a manifestation of orthopaedic problems to pain as a sensory and emotional issue with widespread effects Clinician CWW1 Image 56 made him feel like not a full person – only half a person – so then we talked about feelings, depression Clinician CF3 It allowed the patient to talk about v painful emotional experiences from the past and the impact it had on the present Clinician CFF4
Enabled sharing of experience Clinician CFFF4 The images seemed to unlock something in the patient Clinician COO1 I felt this patient didn’t have the vocabulary to describe what he thought the picture said but he knew it said something Clinician COO3
The results of our study support Kenny’s thesis that improved trust and rapport are not luxurious by-products of improved communication, but essential components of it.6 When disability is perceived as ‘unreal’ because it cannot be seen, ‘we experience’, according to Kleinman, ‘frustrating pressure to prove we are in constant pain’ 4 Our study offers further evidence for a longstanding quest, the quest to be believed and its impact on behaviour and attempts at legitimisation.5,6,26,27 The most common reason voiced for taking part in the St Thomas’ project was to make pain visible and ‘real’ for others. You can’t see pain so people don’t believe it. I had that even more so with doctors (Input Patient)8 The importance to patients of being ‘believed’ was equally evident in the feedback from this pilot study. This patient obviously felt believed when he saw pictures that reflected his pain; his face looked up and he smiled Clinician C004 Confirmed and validated experience of pain effectively Patient PE1 We also found that the fact the images had been made in collaboration with other pain sufferers was important - it enabled them to feel that their own experiences were as valid as those of another’s. Some relationship appeared to exist therefore between the individual and collective pain experience. You realise other people feel the same Patient PBB1 The most frequently cited drawback to using the image resource was increased consultation length, which raises the question, despite real time constraints within the NHS, is there a point at which some patients need a longer consultation? The British Pain Society suggests a 45-min consultation for complex patients in their good practice guidelines.28 By eliciting some of the more complex parts of a person’s history and pain experience, time might
D. Padfield et al. / International Journal of Surgery 8 (2010) 144–150
be saved in the long run.29 There is ample evidence that when doctors and patients can agree and a good long term relationship develops, patients improve.6
5. Conclusions We recognise that the small sample size, the self selected sample of clinics taking part and our lack of information on the sort of pain which patients in this study suffered from, together with its semi-quantitative nature mean no definitive conclusions can be drawn. However, the results suggest that changing the agenda of the pain consultation, in part by using images of pain, might lead to more fruitful dialogue. The clinician has a crucial role in acute settings in interpreting symptoms presented, which may be harbingers of potentially treatable pathology. The heuristic patter of such consultations may actually amount to a sophisticated algorithm modified by the obtained responses. In the more chronic setting, the primary focus for the pain physician is not diagnostic, but rather ‘how can I ease this person’s symptoms?’. However the patient is often stuck in the role of reiterator, hoping that more sophisticated descriptors might enable the doctor to pinpoint the source of their ailment, hence the frequency with which such consultations are accompanied by pages of hand written notes. All too often, this leads to an understated impasse that is unsatisfactory for both parties. Thus there is a need for re-examining the consulting process in such situations and for questioning what constitutes a satisfactory dialogue and endpoint. As Kenny points out ‘‘the challenge for Western Medicine is to search for potentially healing interactions between doctors and their patients that do not rely on the biogenic model of the visible body or the psychogenic model of invisible pain’’.6 A resource of pain images may be one such tool for facilitating ‘healing interactions’. This feasibility study has suggested that, at the very least, images can promote a collaborative approach to the treatment of pain.4 One of the reasons clinicians as well as patients have responded so positively to the images might be that they offer a tool for transformation, both of the consulting space and the pain experience. They can help the clinical focus move from the person with pain to the photograph as mediating objects. The handling, touching, and referencing of photographs draws patients and clinicians into a Gellian performance of ‘personhood being spread around in time and space’.24 If the doctor’s remit also embraces healing of the self, as implied by Broks1 in the opening quote, then such a process has a legitimate place within medical dialogue. At a discussion in Loughborough, photographer Rosy Martin eloquently described our findings: ‘‘What these images offer is a narrative space for people to step into, the possibility of some kind of identification and empathy with the other . some kind of slippery surface for further narrative.’’ Through negotiations across a photographic surface, previously hidden, unverbalised experiences can emerge to be witnessed, dissected and transformed. Would be great to use on a regular basis for everyone in the NHS. Patient PMM3 Conflict of interest There is no conflict of interest. Funding Guy’s & St Thomas’ Charitable Foundation. Sciart Consortium. Arts Council England.
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(Novartis Pharma supported the publication of the book from the original project but did not fund or have any influence over the original project. They did not fund this study/research). (The Napp Educational Foundation now own the Perceptions of Pain Exhibiiton, but they did not fund the original project, nor the study/research reported). Ethical approval Ethical Approval was given by St Thomas’ Hospital Research Ethics Committee (LREC No. EC03/165). Acknowledgements With thanks to all of the clinicians and patients who participated in this study and gave of their time and thoughts so generously. Thanks to the patient collaborators and to the staff at INPUT Pain Unit St Thomas’ Hospital, Bradford Rehabilitation Services and the Meltham Road Surgery, Huddersfield, particularly Dr Frances Cole and Dr Judith Hooper; also to Graham Treacher, Wendy Ritson, David Napier, Penny Florence and Jane Wildgoose. Thanks also to those who funded this study without whose support it would not have happened. We are grateful to all the reviewers for their comments which have enhanced this paper. Perceptions of Pain Exhibition is now owned by the Napp Educational Foundation. J. Zakrzewska’s input was undertaken at UCLH/UCL which received a proportion of funding from the Department of Health’s NIHR Biomedical Research Centres funding scheme. References 1. Broks P. The sounds of a chiming clock: pain, perception and the person in CD pain passion compassion sensibility London. The Wellcome Trust Exhibition Catalogue; 2004. 2. Kimberlin C, Brushwood D, Allen W, Radson E, Wilson D. Cancer patient and caregiver experiences: communication and pain management issues. J Pain Symptom Manage 2004;28:566–78. 3. Yates PM, Edwards HE, Nash RE, Walsh AM, Fentiman BJ, Skerman HM, et al. Barriers to effective cancer pain management: a survey of hospitalized cancer patients in Australia. J Pain Symptom Manage 2002;23:393–405. 4. Kleinman A. The illness narratives, suffering, healing & the human condition. USA: Basic Books; 1988. 5. Hurwitz B In: Padfield D, editor. Peceptions of pain. 1ed. Stockport: Dewi Lewis Publishing; 2003. p. 7–13. 6. Kenny DT. Constructions of chronic pain in doctor-patient relationships: bridging the communication chasm. Patient Educ Couns 2004;52:297–305. 7. Kleinman A. Catastrophe and caregiving: the failure of medicine as an art. Lancet 2008;371:22–3. 8. Padfield D. Perceptions of Pain, Stockport. 1ed. Dewi Lewis Publishing; 2003. 9. Leggat R. A history of photography from its beginnings till 1920. London: Royal Photographic Society; 1999. 10. Duchenne G. Mecanisme de la physiologie humaine. 2ed. Paris: Baillere; 1876. 11. Didi-Huberman G. Invention of hysteria: Charcot and the photographic iconography of the Salpetriere Cambridge Mass. MIT Press; 2003. 12. Martin R, Spence J. New portraits for old: the use of camera in therapy. In: Betterton R, editor. Looking on: images of femininity in the visual arts and media. London: Pandora; 1987. p. 267–79. 13. Wang C, Yuan YLFML. Photovoice as a tool for participatory evaluation: the community’s view of the process and impact. J Contemp Health 1996;4: 47–9. 14. Thoutenhoofd E. Method in a photographic enquiry of being deaf. Sociological Res Online, http://www.socresonline.org.uk/socresonline/3-2/2.html, 1998;3. 15. Stafstrom CE, Goldenholz SR, Dulli DA. Serial headache drawings by children with migraine: correlation with clinical headache status. J Child Neurol 2005;20:809–13. 16. Unruh A, McGrath P, Cunningham SJ, Humphreys P. Children’s drawings of their pain. Pain 1983;17:385–92. 17. Morgan WG. Origin and history of the Thematic Apperception Test images. J Pers Assess 1995;65:237–54. 18. Barthes R. Camera lucida. UK: Vintage; 1993. 19. Berger J, Mohr J. Another way of telling. Cambridge: Granta; 1989. 20. Scott C. The spoken image:photography and language. London: Reaktion; 1999. 21. Wiech K, Farias M, Kahane G, Shackel N, Tiede W, Tracey I. An fMRI study measuring analgesia enhanced by religion as a belief system. Pain 2008;139:467–76.
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22. Edwards E. Photographs and the sound of history. Vis Anthropology Review 2008;21:27–46. 23. Bourriaud N. Relational aesthetics. Dijon: Les Presses Du Reel; 1998. 24. Gell A. In: Hirsch E, editor. The art of anthropology. New York: Berg; 2006. 25. Gell A. Art and agency: an anthropological theory. Oxford: Oxford University Press; 1998. 26. Scarry E. The body in pain. Oxford: Oxford University Press; 1987.
27. Brown C. The lived experience of chronic pain: evidence of people’s voices. In: Rashiq D, Schopflocher D, Taenzer P, Jonsson E, editors. Chronic pain: a health policy perspective. Weinheim: Wiley; 2008. p. 1–18. 28. Anon. Pain management services. Good practice. London: The Royal College of Anaesthetists and the Pain Society; 2003. 29. Starfield B, Wray C, Hess K, Gross R, Birk PS, D’Lugoff BC. The influence of patientpractitioner agreement on outcome of care. Am J Public Health 1981;71:127–31.
Contents lists available at ScienceDirect
International Journal of Surgery journal homepage: www.theijs.com
A slippery surface. can photographic images of pain improve communication in pain consultations? Deborah Padfield a, b, *, Farah Janmohamed c, Joanna M. Zakrzewska b, Charles Pither d, Brian Hurwitz e a
Slade School of Fine Art, University College London, Gower Street, London WC1E 6BT, UK University College London Hospitals NHS Foundation Trust, Department of Oral Medicine, Eastman Dental Hospital, 256 Gray’s Inn Road, London WC1X 8LD, UK c Barts & the London NHS Trust, The Royal London Hospital, Whitechapel, London E1 1BB, UK d The RealHealth Institute, 23-31 Beavor Lane, London W6 9AR, UK e King’s College London, Strand, London WC2R 2LS, UK b
a r t i c l e i n f o
a b s t r a c t
Article history: Received 11 August 2009 Received in revised form 7 October 2009 Accepted 28 November 2009 Available online 9 January 2010
Aim: To ascertain the influence of images depicting different qualities of pain on unselected outpatient pain clinic consultations. Methods: A resource of 64 colour images depicting different qualities of pain was given to patients in clinic waiting rooms, which they could take into consultations and use as a focus for discussion with clinicians. A questionnaire enquiring into the value of such images was completed at the end of each consultation separately and anonymously by clinicians and patients. The questionnaires carried identifiers that allowed pairing in the analysis, which was undertaken qualitatively and thematically. Results: Forty-four percent (20/45) of Pain Clinics declaring an interest in taking part in the study returned 64/80 (80%) pairs of questionnaires. Eighty-six percent (54) of patients related their pain to at least one image during their consultation and 67% found discussion of the images facilitated dialogue. Eighty two percent of clinicians reported improved communication as a result of the images with 78% reporting degrees of greater understanding of patients’ pain. The four main themes identified in analysis of questionnaire data included: a broadening of verbal dialogue; a sense of improved clinician-patient relationship; limitations of setting (time); a variety of practical benefits for future use. The most prominent effect was that the images appeared to encourage discussion of the affective elements of the pain experience. Conclusion: The results suggest that introducing a focus of images of pain into unselected pain consultations can facilitate discussion and lead to more fruitful dialogue between patients and clinicians. Ó 2009 Published by Elsevier Ltd on behalf of Surgical Associates Ltd.
Keywords: Pain Photography Art Doctor-patient communication Visual
1. Background The task of physicians and surgeons is to correct or repair the damage. But, recognizing the intrinsically personal nature of pain and suffering, the doctors’ remit equally embraces the self.1 Pain is one of the commonest symptoms reported to doctors yet ineffective communication is a continuing challenge and remains a barrier to adequate assessment, understanding and treatment.2,3 Modern concepts of pain have moved from the elusive simplicity of a pathophysiologic lesion that represents the ‘seat’ of a pain, towards a complex neural and cortical process that is now frequently thought to ‘explain’ pain, including its cognitive and affective elements. With
* Corresponding author at: Slade School of Fine Art, University College London, Gower Street, London WC1E 6BT, UK. Tel.: þ44 07812 987 555. E-mail address: d.padfi[email protected] (D. Padfield).
this has come the realisation that the physician’s and surgeon’s roles have moved from excision or complete cure, to management, palliation and enabling some healing of the self. As a result of this paradigm shift it is self evident that effective communication is essential for success, but surveys leave no room for complacency about how well this takes place in pain clinics.4,5 A chasm exists between the subjective experience of pain and its objective measurement on a wide variety of validated scales. Most measures are language based, such as the McGill Questionnaire and verbal rating scale, while verbal metaphors remain formulaic, offering the individual little opportunity to express how they feel, or to contextualise the symptoms within a personal narrative. Furthermore, a well-documented stasis exists in many pain consultations as a result of physicians and patients searching for different meanings denoted by symptoms and wishing to protect different agendas.6 The physical, metaphoric and linguistic space in which pain consultations take place can therefore be fraught with
1743-9191/$ – see front matter Ó 2009 Published by Elsevier Ltd on behalf of Surgical Associates Ltd. doi:10.1016/j.ijsu.2009.11.014
D. Padfield et al. / International Journal of Surgery 8 (2010) 144–150
a sense of impasse, albeit seldom explicitly acknowledged during the encounter, as many of the images made during the original project suggest, Fig. 1.
145
But in the late 20th C this use gave way to forms of photoelicitation and phototherapy pioneered by artists, such as Jo Spence and Rosy Martin, who used the construction of photographs to revisit and transform past experiences, including illness experiences.12 Jo Spence’s work affirms the power of photography to return a sense of control to the patient-photographer over their illness and how that illness is represented to others. Versions of phototherapy have evolved since in various arenas of human suffering. Recent studies such as ‘‘Photo-voice’’ a technique researched by Wang, Ling & Ling, involves participants in producing and analysing images themselves or collectively with another professional,13 Thoutenhoofd studied the use of photographs to explore Deaf People’s worlds, terming it ‘autophotography’,14 and much research has been done into the usefulness of children’s drawings for diagnosing pain; pain charts and scales being developed using pictures or numbers, to describe their pain and/or drawings of pain.15,16 However, the study reported here is the first study we know of in which photographs have been used within pain consultations to help in understanding the subjective experience of pain, with a view to improving doctor-patient communication. 2. Methods
Fig. 1. Photograph by Deborah Padfield with Nell Keddie. From the series Perceptions of Pain, 2001–6.
One solution may lie in finding a language with the capacity to explore a patient’s experience of pain beyond the physiological, which could lessen the divide between the significance of the pain as experienced within the sufferer’s social and psychological schema, and the scientific world of current medical understanding of chronic pain. Kleinman describes the capacity to achieve some integration ‘between physiological, psychological and social meanings’ as core to patient complaints.4,7 Could a visual representation of individual pain provide a bridge between the self and the other? Could photographs depicting the personal experience of pain validate the subjective experience of it, so avoiding the need to prove pain’s existence, especially when there are no physical signs from it? Even in this digital age with our awareness of the ambivalence of the relationship between ‘photography’ and ‘reality’ we still ascribe an authenticity to that which is captured photographically, making it a particularly useful medium for recreating the reality of another. In 2001/02 visual artist and pain sufferer, Deborah Padfield, worked with pain specialist Charles Pither and chronic pain patients from St Thomas’ Hospital in London to co-create photographic images of pain, as a means of eliciting a different type of verbal dialogue in hospital about pain.8 Following reports by patients that the process and resulting images helped discussion of the nature and impact of pain on sufferers, a feasibility study was conducted to examine the effect of using pain images during consultations with unselected patients of pain clinics interested in participating in an evaluation. The social sciences have used photographs to help elicit narrative almost since their invention in the 19th C. Photographs have been seen as potentially revelatory in medicine ever since they were used in the 1850s by Dr Hugh Welch Diamond,9 the French neurologist Duchenne10 and by Jean-Martin Charcot, in the context of diagnosing and representing a variety of neurological problems, contentiously including hysteria.11
The study was advertised at the British Pain Society’s Annual Scientific meeting in 2004. Additional photographs were made with patients from Bradford Pain Rehabilitation Unit and Meltham Road Surgery, Huddersfield and integrated with the original set of photographs from St Thomas’ Hospital, to create a spiral bound resource of 64 images depicting different qualities of pain. Twenty pain clinics volunteered to use the visual resource during consultations and to provide feedback. The images were loosely grouped within 15 unmarked themes. Patients were given the resource of pain images prior to consultation and asked to select images which had some resonance for them, and to discuss these during the consultation if they wished. Feedback about the process was collected through written questionnaires independently completed by patients and clinicians and returned to the researchers in sealed envelopes. The patient and clinician questionnaires contained respectively 12 and 7 closed, and 9 and 5 open-ended questions. Ethics approval was obtained and all patients gave written informed consent. The photographs were not intended to be literal descriptors of every possible pain but covered a range of pain qualities, such as temperature, sensation and constrainment. The resource of images aimed to shift the consultation dialogue towards whatever patients needed to say. As projective instruments they bear a slight similarity to the Thematic Aperception Test (TAT), developed in 1935 by Murray and Morgan.17 They were not aimed though at reducing interpretations to diagnoses, but at promoting a collaborative exploration by patient and clinician that could uncover new information. A concurrent mixed methods approach was used to analyse the results, which was independently carried out by two people and then integrated. Quantitative and qualitative data were extracted, separately analysed and linked, where possible. 3. Results Forty-four percent (20/45) of pain clinics declaring an interest in the study returned 80% (64/80) of the pairs of questionnaires. Eighty two percent (n ¼ 52) of clinicians who returned questionnaires reported improved communication and 78% (n ¼ 50) reported greater understanding of patients’ pain experiences. Eighty-six percent of patients (n ¼ 54) related their
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Fig. 2. Effects of use of images as perceived by the clinicians.
Fig. 3. Frequency of choice of pain character group (number of images in each group in brackets on vertical axis) from which images were selected by patients.
pain to at least one image and 67% (n ¼ 43) found discussion of the images facilitated dialogue and/or increased their belief that their clinicians had better understood their experience. Perceived positive and negative effects are summarised in Fig. 2. The pain character group from which images were most often selected was temperature, see Figs. 3–5. The images most frequently selected by patients in this study all depict something being done by an outside agent to a part of the body, with the controlling force outside the frame of the photograph as shown in Fig. 6. The qualitative analysis showed that there were four overall ways in which the photographs appear to have been helpful, which are designated as themes in the analysis. 1 Verbal dialogue was broadened as new information was obtained; it was reported that speedier access to information was gained; there was increased discussion of emotional components, and a change of focus to what the patient felt they needed to say as illustrated.
Added information; further dimension in communicating pain. Clinician CDD1 Fast understanding of the problem. Early identification of kind and nature of her pain. Clinician CK3 Made it more focussed and helped to share my experience of the pain very quickly. Patient PK1 I could express my emotional side too. Patient PF4 I expected stabby pains where in fact there was a bruised sense. Clinician CWW3 The images allowed the patient to express their sadness which I had previously construed as anger Clinician CFF4 Don’t like talking about myself – pictures made it easier, more precise to the point Patient PMM2 I have known this person for 10 months and never knew he had pain all the time Clinician COO3 More graphically demonstrated the emotional side Clinician CU1
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2 Clinician-patient relationship was improved in that the patients’ experience was validated, a shared reference point was provided, and ‘‘ice-broken’’ as shown below. Very useful in opening a rapport with patient Clinician CU2 This patient obviously felt believed when he saw pictures that reflected his pain; his face lit up Clinician C004 Confirmed and validated experience of pain effectively Patient PE1 You realise other people feel the same. Very reassuring Patient PBB1 It diminishes feelings of isolation Patient PEEE2 Established common ground Clinician CK1 Seemed happy and at ease talking about his pain with the images Clinician COO1 Really good not only for explaining/interpreting pain, but also good for people who are not very articulate etc. Patient PMM3 3 Limitations of the image resource were identified in that it notably increased consultation time, sometimes deflected focus from ‘medical’ aspects, and the images did not cover every quality/character of pain as shown in the extracts.
Fig. 4. Photograph by Deborah Padfield with Linda Sinfield. From the series Perceptions of Pain, 2001–6.
Added to consultation length Clinician CDD2 Time leafing through book to demonstrate Clinician CCK2 Needed time to study them and not just glance over them Patient PPU1 Not all images relevant to individual Clinician CE1 May weaken spontaneous description ClinicianCEE2 They did not show my images in any of the images Patient PZZ4 Because the images were used with people with physical disabilities and learning difficulties we found the images in the book too small; these then had to be enlarged Clinician C003 4 Practical benefits and future potential were identified, such as decisions on future management, suggestions for future use and improved format as shown. It made me aware of their vulnerability. It reinforced my clinical view that the patient should receive counselling before further help should be offered for pain management Clinician CFFF4 I think we can use the bank in anger consultations as part of treatment Clinician CMM3
Fig. 5. Photograph by Deborah Padfield. From the series Perceptions of Pain, 2001–6.
Using the images made assessment easier Clinician CE2 Aided communication and treatment suggestions Clinician CE2 I thought the images were amazing and really helped me look closer at the kind of pain I am in Patient PWW1 This type of patient would not have been able to do a questionnaire, was nice to focus on pictures Clinician CCF3 Could be used by patients prior to attending clinic or physio Clinician CEEE2 The patient has difficulty reading and writing, he looked through many pictures for discussion. It gave me a better appreciation as he does not verbalise well. Clinician CF4
4. Discussion A message that emerges from these results is that the resource appeared useful in a variety of ways. Arguably it is the photograph’s potential to trigger memory and construct new and multiple realities for viewers that makes it an apposite medium in this sort of context. The writings of Barthes,18 Berger et al19 and others highlight the relationships between photography and memory, photography and language and conscious and unconscious experience20. In this small study, we found that photographic images did appear to bring some elements of pain experience out of unconscious and into more conscious dialogue and control.
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A recent study by Wiech et al21 concluded that changes in the emotional centres of the brain are able to alter the experience of pain enough to reduce suffering, which might explain why externalising and understanding emotional elements could dilute a pain’s intensity. Images at times acted as triggers to realisations:
I went into more depths about how I feel about my scars Patient PWW1 Enabled us to have an understanding that she felt a ‘‘fraud’’ Clinician CF1 In particular image 59 helped me to understand the patient’s view on medication Clinician CDD3
The images may have become in some sense ‘relational objects’ as described by Edwards,22 Bourriaud23 and Gell24,25 the process of viewing the photographs creating a collaborative narrative.
Fig. 6. Photograph by Deborah Padfield with Robert Ziman-Bright. From the series Perceptions of Pain, 2001–6.
The significance of images is highly individual but also influenced by gender, culture and religious viewpoints. It is in the collaborative process of discovering and dissecting these meanings that their significance to, and impact on, pain experience can emerge. Narrative meaning is mediated through language; and here language has itself been mediated through images. Negotiating between image and language affords status to both image and word and also to patient and clinician, encouraging a sharing of the roles of listener and speaker, helping to equalise the consulting space.
Made us both think/view differently Clinician CEEE2 Helped to share my experience of the pain very quickly Patient PK1 That although I would build on her language – ie. sharp, burning – I could use her picture to reinforce we were talking about the same pain Clinician CF3
Clinicians and patients both referred to the fact that the photographs allowed the emotional components of pain experiences to be addressed. This is not to suggest that chronic pain is psychological in origin, but that by the time it has become chronic, the picture may be so complex and a person’s life so altered that not to address affective elements is counter-productive.
I could see patterns in the pictures – thoughts of suicide, depression, self-harm, tension or stress PFFF4 Moved from discussing pain as a manifestation of orthopaedic problems to pain as a sensory and emotional issue with widespread effects Clinician CWW1 Image 56 made him feel like not a full person – only half a person – so then we talked about feelings, depression Clinician CF3 It allowed the patient to talk about v painful emotional experiences from the past and the impact it had on the present Clinician CFF4
Enabled sharing of experience Clinician CFFF4 The images seemed to unlock something in the patient Clinician COO1 I felt this patient didn’t have the vocabulary to describe what he thought the picture said but he knew it said something Clinician COO3
The results of our study support Kenny’s thesis that improved trust and rapport are not luxurious by-products of improved communication, but essential components of it.6 When disability is perceived as ‘unreal’ because it cannot be seen, ‘we experience’, according to Kleinman, ‘frustrating pressure to prove we are in constant pain’ 4 Our study offers further evidence for a longstanding quest, the quest to be believed and its impact on behaviour and attempts at legitimisation.5,6,26,27 The most common reason voiced for taking part in the St Thomas’ project was to make pain visible and ‘real’ for others. You can’t see pain so people don’t believe it. I had that even more so with doctors (Input Patient)8 The importance to patients of being ‘believed’ was equally evident in the feedback from this pilot study. This patient obviously felt believed when he saw pictures that reflected his pain; his face looked up and he smiled Clinician C004 Confirmed and validated experience of pain effectively Patient PE1 We also found that the fact the images had been made in collaboration with other pain sufferers was important - it enabled them to feel that their own experiences were as valid as those of another’s. Some relationship appeared to exist therefore between the individual and collective pain experience. You realise other people feel the same Patient PBB1 The most frequently cited drawback to using the image resource was increased consultation length, which raises the question, despite real time constraints within the NHS, is there a point at which some patients need a longer consultation? The British Pain Society suggests a 45-min consultation for complex patients in their good practice guidelines.28 By eliciting some of the more complex parts of a person’s history and pain experience, time might
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be saved in the long run.29 There is ample evidence that when doctors and patients can agree and a good long term relationship develops, patients improve.6
5. Conclusions We recognise that the small sample size, the self selected sample of clinics taking part and our lack of information on the sort of pain which patients in this study suffered from, together with its semi-quantitative nature mean no definitive conclusions can be drawn. However, the results suggest that changing the agenda of the pain consultation, in part by using images of pain, might lead to more fruitful dialogue. The clinician has a crucial role in acute settings in interpreting symptoms presented, which may be harbingers of potentially treatable pathology. The heuristic patter of such consultations may actually amount to a sophisticated algorithm modified by the obtained responses. In the more chronic setting, the primary focus for the pain physician is not diagnostic, but rather ‘how can I ease this person’s symptoms?’. However the patient is often stuck in the role of reiterator, hoping that more sophisticated descriptors might enable the doctor to pinpoint the source of their ailment, hence the frequency with which such consultations are accompanied by pages of hand written notes. All too often, this leads to an understated impasse that is unsatisfactory for both parties. Thus there is a need for re-examining the consulting process in such situations and for questioning what constitutes a satisfactory dialogue and endpoint. As Kenny points out ‘‘the challenge for Western Medicine is to search for potentially healing interactions between doctors and their patients that do not rely on the biogenic model of the visible body or the psychogenic model of invisible pain’’.6 A resource of pain images may be one such tool for facilitating ‘healing interactions’. This feasibility study has suggested that, at the very least, images can promote a collaborative approach to the treatment of pain.4 One of the reasons clinicians as well as patients have responded so positively to the images might be that they offer a tool for transformation, both of the consulting space and the pain experience. They can help the clinical focus move from the person with pain to the photograph as mediating objects. The handling, touching, and referencing of photographs draws patients and clinicians into a Gellian performance of ‘personhood being spread around in time and space’.24 If the doctor’s remit also embraces healing of the self, as implied by Broks1 in the opening quote, then such a process has a legitimate place within medical dialogue. At a discussion in Loughborough, photographer Rosy Martin eloquently described our findings: ‘‘What these images offer is a narrative space for people to step into, the possibility of some kind of identification and empathy with the other . some kind of slippery surface for further narrative.’’ Through negotiations across a photographic surface, previously hidden, unverbalised experiences can emerge to be witnessed, dissected and transformed. Would be great to use on a regular basis for everyone in the NHS. Patient PMM3 Conflict of interest There is no conflict of interest. Funding Guy’s & St Thomas’ Charitable Foundation. Sciart Consortium. Arts Council England.
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(Novartis Pharma supported the publication of the book from the original project but did not fund or have any influence over the original project. They did not fund this study/research). (The Napp Educational Foundation now own the Perceptions of Pain Exhibiiton, but they did not fund the original project, nor the study/research reported). Ethical approval Ethical Approval was given by St Thomas’ Hospital Research Ethics Committee (LREC No. EC03/165). Acknowledgements With thanks to all of the clinicians and patients who participated in this study and gave of their time and thoughts so generously. Thanks to the patient collaborators and to the staff at INPUT Pain Unit St Thomas’ Hospital, Bradford Rehabilitation Services and the Meltham Road Surgery, Huddersfield, particularly Dr Frances Cole and Dr Judith Hooper; also to Graham Treacher, Wendy Ritson, David Napier, Penny Florence and Jane Wildgoose. Thanks also to those who funded this study without whose support it would not have happened. We are grateful to all the reviewers for their comments which have enhanced this paper. Perceptions of Pain Exhibition is now owned by the Napp Educational Foundation. J. Zakrzewska’s input was undertaken at UCLH/UCL which received a proportion of funding from the Department of Health’s NIHR Biomedical Research Centres funding scheme. References 1. Broks P. The sounds of a chiming clock: pain, perception and the person in CD pain passion compassion sensibility London. The Wellcome Trust Exhibition Catalogue; 2004. 2. Kimberlin C, Brushwood D, Allen W, Radson E, Wilson D. Cancer patient and caregiver experiences: communication and pain management issues. J Pain Symptom Manage 2004;28:566–78. 3. Yates PM, Edwards HE, Nash RE, Walsh AM, Fentiman BJ, Skerman HM, et al. Barriers to effective cancer pain management: a survey of hospitalized cancer patients in Australia. J Pain Symptom Manage 2002;23:393–405. 4. Kleinman A. The illness narratives, suffering, healing & the human condition. USA: Basic Books; 1988. 5. Hurwitz B In: Padfield D, editor. Peceptions of pain. 1ed. Stockport: Dewi Lewis Publishing; 2003. p. 7–13. 6. Kenny DT. Constructions of chronic pain in doctor-patient relationships: bridging the communication chasm. Patient Educ Couns 2004;52:297–305. 7. Kleinman A. Catastrophe and caregiving: the failure of medicine as an art. Lancet 2008;371:22–3. 8. Padfield D. Perceptions of Pain, Stockport. 1ed. Dewi Lewis Publishing; 2003. 9. Leggat R. A history of photography from its beginnings till 1920. London: Royal Photographic Society; 1999. 10. Duchenne G. Mecanisme de la physiologie humaine. 2ed. Paris: Baillere; 1876. 11. Didi-Huberman G. Invention of hysteria: Charcot and the photographic iconography of the Salpetriere Cambridge Mass. MIT Press; 2003. 12. Martin R, Spence J. New portraits for old: the use of camera in therapy. In: Betterton R, editor. Looking on: images of femininity in the visual arts and media. London: Pandora; 1987. p. 267–79. 13. Wang C, Yuan YLFML. Photovoice as a tool for participatory evaluation: the community’s view of the process and impact. J Contemp Health 1996;4: 47–9. 14. Thoutenhoofd E. Method in a photographic enquiry of being deaf. Sociological Res Online, http://www.socresonline.org.uk/socresonline/3-2/2.html, 1998;3. 15. Stafstrom CE, Goldenholz SR, Dulli DA. Serial headache drawings by children with migraine: correlation with clinical headache status. J Child Neurol 2005;20:809–13. 16. Unruh A, McGrath P, Cunningham SJ, Humphreys P. Children’s drawings of their pain. Pain 1983;17:385–92. 17. Morgan WG. Origin and history of the Thematic Apperception Test images. J Pers Assess 1995;65:237–54. 18. Barthes R. Camera lucida. UK: Vintage; 1993. 19. Berger J, Mohr J. Another way of telling. Cambridge: Granta; 1989. 20. Scott C. The spoken image:photography and language. London: Reaktion; 1999. 21. Wiech K, Farias M, Kahane G, Shackel N, Tiede W, Tracey I. An fMRI study measuring analgesia enhanced by religion as a belief system. Pain 2008;139:467–76.
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