Suffering and Culture

1 Contents Introduction Peter Wemyss-Gorman 3 Suffering and culture 1. The anthropology of pain: Linking culture and physiology Simon Dein 4 2. Pain behaviour in the Armed Forces Philip Harper 11 3. The experience and expression of pain: Does ethnicity and culture make 16 a difference? Jonathan Koffman 4. Culture, beliefs and chronic pain Michelle Briggs 25 5. Suffering and culture: Perspectives from rural New Zealand 29 Stephen Main 6. General discussion on suffering and culture 34 7. Unrelieved pain is a global phenomenon: Pain treatment should be a human right Michael Bond 37 8. Managing pain in Malawi: A video presentation Roy Miller 42 9. A personal experience of palliative care in Kerala Tom Middlemiss 42 10. Global pain: The size of the problem; what needs to be done? 48 Michael Bond 11. Tolerance, pain and suffering: The responsibilities of sufferers 54 Bobbie Farsides 12. What happens if you have the ‗fix‘ for pain and it doesn‘t fix you? 64 Paul Dieppe 13. Alleviating suffering at the end of life: Symbolic immortality and other 67 coping strategies Robert Zalenski and Luisa Kcompt 14. Pain, suffering and ‗loss of dignity‘ – Valid Reasons for killing? 74 Michael Platt 15. The pain(s) of chronic pain: Frustration, inconvenience, loss and despair 78 Beatrice Sofaer-Bennett 16. Public health and private angst: Ethical dilemmas in giving unwanted information Peter Bennett 80 17. Treating pain in mind, body and soul Jeremy Swayne 87 18. Hope and hopelessness 95 Peter Wemyss-Gorman 2 Contributors Peter Bennett, Head of Analysis for Health Protection. Department of Health Sir Michael Bond, Emeritus Professor of Psychological Medicine, University of Glasgow; Past President, International Association for the Study of Pain Michel Briggs, Senior Research Fellow Institute of Health and Social Work, University of Leeds Simon Dein, Senior Lecturer in Anthropology and Medicine, University College London Paul Dieppe, Professor of Clinical Education Research, Peninsular Medical School, Plymouth Phil Harper, Director of CPD and Programme Leader, Oxford Brookes University Bobbie Farsides, Professor of Clinical and Biomedical Ethics, Brighton and Sussex Medical School Jonathan Koffman, Senior Lecturer in Palliative Care, King‘s College London Stephen Main, Medical Officer, Rawene Hospital, Kaikohe, New Zealand Tom Middlemiss, Research Fellow, Edinburgh University Roy Miller, Consultant Anaesthetist at Beit Cure International Hospital, Blantyre, Malawi Michael Platt, Consultant in Pain Medicine, Imperial College NHS Trust, London Beatrice Sofaer-Bennett, Reader, Clinical Health Centre for Health Professions, University of Brighton Jeremy Swayne, Retired GP, Homeopath and Priest Peter Wemyss-Gorman, Retired Consultant in Pain and Anaesthesia Robert Zalenski, Director, Palliative Medicine, Sinai Grace Hospital, Detroit, United States 3 Introduction There was an unprecedented level of interest in this meeting and a record number of applicants. This might seem to reflect a perception that the subject which is of growing importance in a multicultural society and an interdependent world has been relatively neglected in the pain literature, and rarely featured in conventional meetings; and for some of us, at least, an awareness of the inadequacy of our own cultural competence. Also, perhaps there was the fascination of discovering the importance of culture among the many factors which influence not only the conscious perception and tolerance – and intolerance – of pain, but even the physiological response to it. Others may have been drawn to the meeting by the implications of the subject regarding the acceptability of unrelieved pain in societies with inadequate medical resources, and yet others in the hope of finding something to alleviate their anxieties in dealing with apparently intolerable suffering. Whatever their reasons for attending, every one of the participants came away enriched not only by the insights provided by the speakers but by the opportunity to share their problems and concerns with others whose working lives are dedicated to the relief of suffering. Peter Wemyss-Gorman, Outgoing Secretary, Philosophy and Ethics Specialist Interest Group 4 The anthropology of pain: Linking culture and physiology Simon Dein “When we talk about pain we talk not just about physiological response but the reaction to pain; its perception and how people deal with that, and that’s highly culturally elaborated.” I’m a Consultant Psychiatrist but also an honorary palliative care doctor so I do work with pain control at a hospice in Harlow. I have a Doctorate in Social Anthropology. My main areas of research are in religious experience in mental health. Ethnicity, culture and pain Let me say first of all that it is only in the last twenty years or so that anthropologists have taken any interest in the area of anthropology and pain. To set the scene, I want to say a little about anthropology which is essentially the study of mankind in its wider social context. The area I have specialised in is medical anthropology which is looking at understanding illness, disease and their treatment in a cultural context. If there is anything universal in anthropology it is pain and today I want to discuss how culture doesn‘t just determine the perception and expression of pain, but also has clinical implications because one of the most important findings in the health culture literature is the disparity of pain control within ethnic minority patients. I‘ll say right at the beginning that in many cases the literature is extremely flawed to the extent that race, culture and ethnicity are often intermingled and vaguely defined: when we talk about high and low rates of pain control we have looked at ‗Afro- Caribbeans‘ and not distinguished between people from Trinidad and Barbados. Setting the Scene The area of pain and culture goes back about fifty years to two sociologists, Fabrega and Tyma, who argued that pain is far from a purely physiological phenomenon. When we talk about pain we talk not just about physiological response but the reaction to pain; its perception and how people deal with that, and that‘s highly culturally elaborated. Back in the 1950s researchers talked about the idea that how people expressed pain is determined by their attitude towards it. A study in the US looking at Dysmenorrhoea found at that time that very few women saw this as a medical problem. Very few were able to talk about it openly. Attitudes to it have obviously changed since then. The study argued that the very construction of Dysmenorrhoea as a medical syndrome influenced the women not just to discuss it but how they actually experienced the pain in the first place. As anthropologists we argue that cultural factors relate to the whole experience of pain. Generally we differentiate between private and public pain. It‘s a truism to say that all pain is a private experience. Cultural factors determine whether that pain is elaborated, whether it is discussed and what people do about it. Perception Probably the most pressing topic today in terms of culture and pain is the area of perception. This is fraught with controversy. How do you begin to look at the various 5 ways in which people perceive pain? Experimentally this is done by inflicting pain in laboratory-based conditions either by applying heat or cold or by Ischaemia. Back in the 1950s it was argued that there is a strong cultural component in the perception of pain and that white people, women and the rich experienced pain a lot more than Africans or Afro-Caribbeans – a very racist idea. How has our thinking changed? A recent study by Williams in 2007 looking at temperature-related pain compared pain thresholds and tolerance in three groups in the US: Hispanics, African- Americans and white non-Hispanics. She found consistent differences in African-Americans compared to the other two groups with both a lower threshold to and tolerance of pain. (We have to differentiate threshold from pain tolerance – these are often mixed up in the literature) This is very clinically significant because we know that in the US the Afro-Caribbean population are generally prescribed much lower dosages of opioid drugs and scales of pain control endorse the fact that their pain is very poorly controlled. Expression of pain How does culture determine the ways in which pain is expressed? Pain is expressed verbally and non-verbally. Even from the non-verbal component it seems that some cultural groups are far more stoical in their expression of pain, particularly Japanese and Chinese people. Some years ago when I was a house surgeon [intern] in an Italian hospital being called to casualty [ER] to see a Vietnamese man with a perforated duodenal ulcer who was lying there very stoical among lots of other people who were screaming. It seemed to me that it must be part of his culture not to express that pain either verbally or non-verbally, and there do seem to be differences between South Asians and Westerns in their expression of pain. The language in which pain is expressed of course varies according to the cultural group. In South East Asian cultures, for instance in India, many words used for pain are also used to describe food and plants, with a one-to-one metaphorical relationship between the two, to such an extent that words such as sweet pain, hot pain, burning pain determine its treatment by applying herbs which can cause heat or cold etc. In Britain there have been a couple of studies suggesting that the way people express pain such as headache, depends on their knowledge of medical terminology, and may go along to their GP and say ‗I have a migrainous pain in my head‘. This is something unknown in non-Western cultures. I am going to talk a little about expression in cultural groups in relation to emotion.

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