The Experience and Expression of Pain

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Presented by Dr Jonathan Koffman at the Hospiscare conference 'Dignity of Difference' on the 5th November 2010.

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  • Race, ethnicity and culture have potential to be presented as explosive concepts. How these concepts are defined, and why are they are often conflated with other social metrics is often ignored within the medical literature
  • Ethnicity’s derived from a Greek word meaning a people or tribe. This construct’s neither simple nor precise and there’s much debate about the classification of ethnic groups.
    It includes not only culture but also shared origins, language, religion, and perception of self.
    Problems arise since ethnic boundaries are imprecise and fluid especially in second and third generation people who might have considerable contact with the host culture.
  • Culture’s a social construct characterised by the behaviours and attitudes of a social group.
    Determined by upbringing and choice, culture refers to guidelines which individuals learn as members of a society. These tell them how to view the world, how to experience it emotionally, and how to behave in relation to other people.
    Culture is expressed materially, for example diet, dress, or ritual practices, or non-materially such as language, social order, or kinship systems.
    There’s no such thing as a pure culture and the boundaries between cultural groups are often unclear.
  • As ethnic and cultural diversity increases in countries around the world, health and social care professionals are more likely to care for patients from backgrounds different to them. This provides fascinating challenges.
    This aim of this presentation is to examine the complex relationship between ethnicity, culture and the experience and expression of pain across diverse groups. It will focus on the following issues: (i) differences in the receipt of analgesia to manage pain; (ii) evidence of biological differences among different racial groups that explain pain responses; (iii) cultural responses to pain that shape or pattern pain attributions and its expression (iii) the assessment and communication of pain in the clinical encounter; and (iv) health service-related factors that explain differences in pain management.
  • The A and E used to be the worst part of my going to hospital: the nurses didn’t understand, the doctors didn’t understand, they do all the questioning. They wanted to know why the medication wasn’t working. Why are you still in pain? If you are crying, why are you crying; if you are not crying how can you not be in pain?
    (African Caribbean patient Sickle Cell Disease)
  • Pain is one of the most common and distressing symptoms associated with cancer with a prevalence of over 90% in the more advanced states of the disease.
    As many of you will know from your clinical practice and your research its a symptom that frequently eclipses many other QoL experiences.
    Its not for nothing that Albert Scheitzer’s reported to have said:
    Pain is an even worse master than death itself
  • Cleeland accounts for an element of poor treatment due to poor assessment and linguistic barriers and also the hesitation to report pain
  • Systematic Assessment of Geriatric Drug Use via Epidemiology (SAGE) database.
    13,625 cancer patients aged 65 years and older.
    Prevalence and predictors of daily pain and delivery analgesic treatment were analyzed over a 7-day period.
    Minority patients more likely to receive no analgesia.
    In the adjusted model, African Americans appeared to have a 63% greater probability of being untreated relative to whites.
    Similar results observed for patients belonging to other minority groups.
  • Whilst pain’s an individual experience that may affect people differently it’s also plausible that biological markers which may be shared within a group may contribute to reported pain severity.
    If this is so, ethnic differences in experiential pain sensitivity could help explain group differences in clinical pain.
    However, the evidence base that has attempted to explore this complex aspect of pain presents a mixed picture.
    Some of the early studies conducted by Chapman and Jones reported lower heat pain thresholds and tolerance among African American study participants compared non-white Hispanics. However, more recent (and more sophisticated) studies that have utilised several different assessments methods to compare pain among African Americans and non-white Hispanics haven’t identified marked differences in pain ratings across groups
  • But pain isn’t just the sole creation of our anatomy and physiology. Morris argues that the medicalised view neglects important insights into pain which can be gained through an appreciation of art, literature and culture. In this respect, pain can be said to have had a 'dual history‘. The task is to integrate these medical and cultural discourses on pain rather than allowing the former the dominance it has historically enjoyed over the latter.
    As Illich (23) notes, in traditional cultures: '...pain was recognised as an inevitable part of the subjective reality of one's own body', and was made tolerable by integrating it into a meaningful setting.
    Pain therefore emerges at 'the intersection of bodies, minds and cultures'. Just think about the definition of pain subject to multiple variations in its interpretation and meaning.
    According to the Oxford Reference Dictionary pain (from the Latin poena, meaning penalty or punishment) refers to any, or all of the following:
    An unpleasant feeling caused by injury or disease of the body.
    Mental suffering.
    [old use] punishment e.g. 'on pain of death'.
  • The classic studies of Zborowski and Zola on pain responses of Jewish people, Italian-Americans, English Americans and Irish-Americans, are often quoted for pinpointing the relationship between culture and pain and the marked differences between these groups.
    They show relationship between socio-cultural dimensions and the shaping of pain.
    In these very early studies we begin to appreciate that culture fills the space between the embodiment of disease as a physiological process and its meaning-laden experience as a human phenomenon.
  • So as you can see in this slide, the meaning and expression of pain and suffering is socially learned and has cultural significance.
    Culture is the conditioning influence in forming the individual’s patterns of responding to, and the expressing distress.
  • I want to quickly illustrate this theory in relation to recent research we’ve undertaken among two ethnic groups: black Caribbeans and white British people, living in three inner London boroughs in south London.
    Several years ago we conducted a retrospective comparative survey of deceased Caribbean and white British cancer patents’ experiences during their last year of life. We explored close relatives accounts of the presence of cancer-related symptoms among their deceased dependants and the distress associated with these symptoms.
    We found that whilst the frequency of symptoms were quite similar in both ethnic groups, symptom-related distress was more pronounced among Caribbean patients.
    Our regression analysis showed that ethnicity was independently associated with ethnicity for seven symptoms including pain. However, exactly how this process was operating wasn’t within the scope of the survey to answer.
  • We therefore attempted to extend our understanding about these ethnic groups and conducted a qualitative comparative study of Caribbean and white British patients living with and dying from advanced cancer.
    The aim of our study was to explore the meanings patients in both ethnic groups attributed to their symptom experience in order to develop a model to understand how they’re culturally patterned and shaped.
    The interviews were informal in style and began with a general discussion about what participants felt about cancer and its causation and then progressed to explore symptoms that bothered or troubled them, particularly as their illness progressed.
    We interviewed a total of 26 BC and 19 WB patients.
    23 Black Caribbean and 15 White British patients reported they’d experienced pain as a result of their cancer.
    They used a variety of descriptors and metaphors to convey to us the physical and mental sensations associated with their symptom. These were universally negative in nature.
  • Twenty four patients offered accounts that governed how they related to their cancer-related pain.
    Four meanings were evident and help to understand how participants comprehended their experience.
    Pain as a test of religious faith and pain as a punishment were exclusive to Black Caribbean patients.
  • One view of pain as a challenge represented a task or a hurdle that imposed demands on participants that needed to be overcome by any means available. Four patients (three Black Caribbean and one White British) described their pain in this way.
    One such case was Bill, a White British man, who had at various times in the past engaged in high risk, demanding occupations, for example erecting scaffolding and boxing.
    In his account, Bill trivialized the impact of his pain and exhibited a stoic bravado that may have reflected his up-bringing and male-dominated career in south east London.
    His attitude may also have reflected his personal style in coping, similar to ‘bracketing-off’ or ‘normalising’ the effects of his disease that Mike Bury refers to in his theory of biographical disruption. He commented:
  • Four White British and three Black Caribbean participants viewed their cancer-related pain experience as ‘an enemy’. This meaning referred to situations where participants described their pain as an unfair attack by a hostile force. Views often made use of battlefield metaphors, focusing on the need to ‘fight’ or ‘defend’ themselves from their pain. Others were more ready to capitulate. These are the typical views that litter the contemporary cancer literature. Jeanie, an older white British woman with pancreatic cancer used the word ‘fight’ to describe her strategy of adaptation to her constant pain. She said…
    In contrast, Martin, a white British man with prostate cancer was unable to understand his enemy in those terms. Instead, the data suggests he felt more helpless, wanting very much to repress his on-going campaign against his “war”.
    While still viewing pain as an enemy, two White British participants departed from the more common metaphor of the battlefield to comprehend their pain. For example, a young woman named Becky with adenocarcinoma and a anovaginal fistula perceived her pain as a wicked or demonic entity. She said: I look at it like there’s been a devil in me. Some days, you know, I feel like cutting out my own stomach and taking it (the pain) out.
  • Pain represented a test of faith for a number of Black Caribbean cancer patients. This meaning was associated with confirmation and strengthening of religious belief and loyalty to God. Analysis of this theme revealed two groups; patients who met their test and those overcome by it.
    Meeting a test of faith offered some participants a means to mobilise their belief of God in light of the unknown. For example Matilda believed that only through her unquestioning faith would she be able to overcome her challenge.
    You might be aware that Job, convinced of his own innocence, maintains that his suffering can’t be accounted for by anything he’s done. He can’t find any reason for God to be test him. He curses the day of he was born. Ultimately, however, his faith returns and he emerges whole.
  • The meaning of pain as a punishment was also specific to Black Caribbean participants to comprehend their pain. This punitive metaphor was either focused on mankind in general, or specifically at the level of the individual.
    Franklyn, a Caribbean man with prostate cancer interpreted the punishment his pain inflicted at the level of mankind. He believed we had all sinned, were disobedient and had taken God for granted. A price had to be paid yet it was considered ‘justified’ and accommodated more readily.
    This view is in stark contrast to Charmaz’s study of the chronically ill that included patients with heart disease, cancer and multiple sclerosis. She noted:
    ‘The language of suffering severely debilitated people spoke was a language of loss. They seldom talked of gaining a heightened consciousness of the world, revelations about self or insight into human nature from their experiences.’
  • As symptoms arise, for example cancer-related pain, they are perceived and evaluated by patients against a complex repertoire of previous personal experiences, experiences of others known to patients, as well as patient and third-party expectations about how, and in what manner, the symptoms should be regarded.
    Within the context of this study the dynamic between the cancer patients and their social interactions with society demonstrated that the meanings they attributed to cancer-related pain and reactions to it were seen to influence one another.
  • At its core pain represents a subjective experience. It therefore relies heavily on impeccable assessment and communication between health care professionals and patients. Although patients from minority ethnic groups share many of the same concerns that limit pain control with majority populations, data from a number of studies suggests that the manner in which pain is communicated varies from one group to the next.
    Several important issues therefore warrant consideration. First, patients with serious medical conditions, for example advanced cancer, may under-report their pain and its severity and this may be culturally determined.
    For example, African American and Hispanic cancer patients have reported that stoicism and the belief that their pain is an inevitable part of their illness experience and must be accepted .
    Second, the most frequently studied factor that has been shown to influence pain assessment involves its actual severity. When pain severity is low, patients and health care professions report good agreement in rating of this symptom
    However, when patients rate higher levels of pain there is evidence that health care professionals don’t concur with their assessments. In addition, there is also evidence that patients reporting high pain severity also experience prejudiced stereotyping which may be amplified by racism
  • The mismeasure of care continues into the supply of therapeutics in geographical areas where larger numbers of minority ethnic communities live.
    Sean Morrison’s work in New York has identified opioids were frequently not available in areas populated by BME communities.
    There is also evidence of an inverse care law being present in relation to specialist palliative care for BME groups. Research in the USA and the UK has shown that those with clinical needs are sometimes least likely to access care to manage distressing symptoms like pain when its most needed most.
  • This presentation has attempted to examine the multiple factors that contribute to the difference in the manner which pain and cancer related pain is both managed and experienced by people from different ethnic groups.
    What the studies do as a body of research is to make a cogent case that this is an important area of future research to improve the experience of pain, particularly as society becomes more diverse.
    The studies also identify that the scientific discourse, which has largely dominated the study of pain and ethnicity, represents only one part of a broader canvas upon which the nature and reality of pain can be painted.
  • What I have also emphasized is that patients and health professionals bring their own cultural attitudes to bear on the interpretation and communication of the cancer pain experience.
    The adage “pain is whatever the experiencing person says it is” is widely accepted in the Western pain management.
    Yet in this interaction its the health professional’s knowledge and attitudes that frequently dominate the response to patient’s experience of pain.
    This is particularly true for patients where responses to pain may seem inappropriate and even anti-therapeutic from what’s considered typical or usual.
  • In early 1960s, Dame Cicely Saunders proposed the concept of ‘total pain’ which incorporated physical, psychological, social, emotional, and spiritual elements.
    This approach viewed pain as a key to unlocking other problems and as something requiring multiple interventions for its resolution. Critically, total pain was tied to a sense of narrative and biography, emphasizing the importance of listening to the patient’s story and of understanding the experience of their distress in a multifaceted way.
    My presentation hopefully suggests that the current and commonly used biomedical model of conceptualizing and assessing pain does not sufficiently encompass the patient’s dimension of this symptom, particularly among different cultural groups.
  • The Experience and Expression of Pain

    1. 1. The experience and expression of pain: does ethnicity and culture make a difference? Dignity of Difference: 5th November 2010 Dr Jonathan Koffman Department of Palliative Care, Policy and Rehabilitation
    2. 2. www.kcl.ac.uk/palliative What exactly do race, ethnicity and culture mean to you?
    3. 3. www.kcl.ac.uk/palliative Understanding diversity and conceptualUnderstanding diversity and conceptual sloppinesssloppiness
    4. 4. www.kcl.ac.uk/palliative Race: a bio-scientific concept with an ingloriousRace: a bio-scientific concept with an inglorious pastpast • Craniometrical research (analysis of human skulls) divided human species into 5 races: – fairness/high brows of Caucasians - physical expressions of ‘loftier mentality’ and ‘more generous spirit’ – dark skin/sloping craniums of ‘Ethiopians’ proof of genetic proximity to primates • Individual Africans differ as much, or even more, from other individual Africans as Europeans differ from Europeans' J.F.J.F. Blumenbach (1752-1840)Blumenbach (1752-1840)
    5. 5. www.kcl.ac.uk/palliative EthnicityEthnicity • Derived from Greek word: ‘people’ or ‘tribe’ –‘Shared origins or social backgrounds; shared culture and traditions that are distinctive, maintained between generations, and lead to a sense of identity and group; and a common language or religious tradition’ (Senior & Bhopal 1994) • Social/scientific acceptability that ‘race’ lacks
    6. 6. www.kcl.ac.uk/palliative
    7. 7. www.kcl.ac.uk/palliative CultureCulture • ‘Recipe’ for living in the world (Donovan 1986) • Expressed materially (as in diet, dress, or ritual practices) or non- materially (as in language, social or political order, or kinship systems)
    8. 8. www.kcl.ac.uk/palliative Pain and BME populationsPain and BME populations • Sub-therapeutic care • Experimental/genetic explanations • Cultural ‘shaping’ • Communication and pain assessment • Healthcare system factors
    9. 9. www.kcl.ac.uk/palliative Treatment of pain in emergency departments:Treatment of pain in emergency departments: the BME experiencethe BME experience • Evidence of inadequate pain control: – African Americans and Hispanics less likely to receive analgesia than non-Hispanic white counterparts for fractures – not explained by gender, language or insurance status (Todd et al 1993, 1994, 2000)
    10. 10. www.kcl.ac.uk/palliative Copyright restrictions may apply. Pletcher, M. J. et al. JAMA 2008;299:70-78. % of ED pain-related visits where opioids prescribed: by race/ethnicity and survey year (1993-2005)
    11. 11. www.kcl.ac.uk/palliative Advanced cancer and quality of lifeAdvanced cancer and quality of life • Cancer outcomes go beyond survival: – health-related quality of life • Pain is common: – 35%-96% during advanced cancer (Solano, Gomes & Higginson 2006): – eclipses many other QoL experiences
    12. 12. www.kcl.ac.uk/palliative Sub-therapeutic treatment of cancer painSub-therapeutic treatment of cancer pain Cleeland et al. 1994 1,300 racially/ethnically diverse out-patients in 54 USA treatment locations Hispanic and African American patients 3 times more likely to be under-medicated than white patients Cleeland et al. 1997 216 patients (106 African American patients, 94 Hispanic patients, and 16 patients of other minority ethnicity groups) 72% Hispanic & 59% African American patients received inadequate patient relief according to WHO guidelines Anderson et al. 2000 108 African-American and Hispanic patients 28% Hispanic & 31% African American patients received analgesics insufficient to manage pain
    13. 13. www.kcl.ac.uk/palliative Older people: treatments not used: pOlder people: treatments not used: pharmacological treatment of cancer patients with pain in US nursing homes according to the WHO pain ladder (Source: Bernabei et al., JAMA 1998;279(23):1877-1822) 0 10 20 30 40 50 No analgesia Acetaminophen Combination Agents Opioids % 65-74 yrs 75-84 yrs 85+ yrs
    14. 14. www.kcl.ac.uk/palliative Experimental/genetic explanations • Pain thresholds: – variable tolerances to multiple pain tasks in African Americans compared to non- Hispanic whites (Chapman & Jones 1944, Campbell, Pilligim & Edwards 2003) • Polymorphisms • Pharmacogenetics • Pharmacogenomics
    15. 15. www.kcl.ac.uk/palliative Interface with cultureInterface with culture • Pain not just a physiological response to tissue damage • Pain is a bio-psychosocial phenomenon –emerges at ‘intersection of bodies, minds and culture’ (Morris 1991) • Private and public faces of pain - takes place within social context: –patterned and shaped by cultural factors (Helman 1990)
    16. 16. www.kcl.ac.uk/palliative The presentation of private and publicThe presentation of private and public painpain • Some cultures express/expect extravagant displays (Italian and Jewish), others more stoicism (Irish) (Zborowski 1952, Zola 1966, Zborowski 1969)
    17. 17. www.kcl.ac.uk/palliative The presentation of private and public painThe presentation of private and public pain INDIVIDUAL SOCIETY Response to pain behaviour (s) Pain behaviour(s)
    18. 18. www.kcl.ac.uk/palliative The experience and expression of cancer-related painThe experience and expression of cancer-related pain
    19. 19. www.kcl.ac.uk/palliative • 23/26 Black Caribbean and 15/19 White British patients reported experiencing pain • Pain descriptors included: awful bubbling burning dull excruciating mingling nagging nuisance pulling terrible troubling stabbing
    20. 20. www.kcl.ac.uk/palliative Meanings of painMeanings of pain Meaning Description Sub-categories Pain as a challenge Task or hurdle that needs to be overcome Mastering the challenge Unable to meet the challenge Pain as an enemy Unfair attack by hostile force Pain as a test of faith Associated with confirmation of religious belief Meeting a test of faith Unable to overcome test of faith Pain as a punishment Characterised by theme of wrongdoing Justified or unjustified punishment
    21. 21. www.kcl.ac.uk/palliative Pain as a challengePain as a challenge • Bill, White British male with colon cancer: I’ll take it as it is. There’s no chips on the shoulder, no worries about it. Neither does my family. We’ll just carry on. …My outlook is much stronger probably than a normal person. And I mean that. … The only two things ever I done was fight and hang about with one arm two hundred feet up in the air most of my life. The discipline of the whole thing I’ve been through. Obviously I’m not dancing up and down, but I’m er I’m not frightened. Not… I’m not er… I’m not frightened of it or nothing (WB36, GI cancer, 69 years)
    22. 22. www.kcl.ac.uk/palliative Pain as an enemyPain as an enemy • Jeanie, White British woman with pancreatic cancer: I used to fight the pain as much as possible.…it’s hardened me I think, and that's why I can (now) fight pain off. (WB30, GI cancer, 81 years) • Martin, white male with prostate cancer: Its like the War. It's horrible and you want to forget it. But you can’t. (WB35, GU cancer, 78 years)
    23. 23. www.kcl.ac.uk/palliative Pain as a test of religious faithPain as a test of religious faith • Matilda, Black Caribbean woman with breast cancer: In some way I think he, he’s tested me. …To see how strong I am, how strong my faith is, how much I believe in him. I don’t know if you ever read about in the Bible about Job … And even his wife turned around and said, “You silly man,” or whatever, “Stupid man. Curse God and all that.” And he’s saying to her, he’s so, so determined, “No, woman, you can’t be like that. You can’t curse God and all that,” . And he kept his faith. … I’ll keep hanging on, and I’m hanging on till the last minute (BC13, breast cancer, 52 years)
    24. 24. www.kcl.ac.uk/palliative Pain as a ‘justified’ punishmentPain as a ‘justified’ punishment • Franklyn, Black Caribbean man with prostate cancer: Franklyn: I'm making lots of mistakes and want to improve. JK to Franklyn: How do you think this affects your cancer and the problems you have? Franklyn: Sin is a little word name 's' 'i' 'n'. I know what it comes from:- disobedience. (BC07, GU cancer, 72 years)
    25. 25. www.kcl.ac.uk/palliative Relationship between experience of pain, construction of meaning and patients’ culture Interpretation and response to pain Normalisation of symptom-related distress Possible mediators: gender, age, social class, ETHNICITY and CULTURE Cancer-related pain Accommodation of symptom-related distress not achieved
    26. 26. www.kcl.ac.uk/palliative Communication and pain assessmentCommunication and pain assessment • Manner in which pain and concerns about treatment communicated vary from one group – misconceptions that opioids addictive / intolerable side-effects (Cleeland et al 1997, Anderson et al 2000) • Patients reporting high pain severity subject to prejudiced stereotyping (Tait & Chibnall 1998)
    27. 27. www.kcl.ac.uk/palliative Healthcare system factorsHealthcare system factors • Pharmacies in non-white neighbourhoods less likely to carry opioids for treatment of pain compared to those in white neighbourhoods (Morrison et al 2000) • Disparities in specialist palliative care utilisation (Payne et al 2003, Koffman & Higginson 2001)
    28. 28. www.kcl.ac.uk/palliative Implications for clinical/psychosocialImplications for clinical/psychosocial carecare • Pain is complex, very complex! –expressions of pain understood by those within same culture but not well understood by those outside the culture • Reporting pain therefore represents social transaction between patient/health care professional
    29. 29. www.kcl.ac.uk/palliative Implications for clinical/psychosocialImplications for clinical/psychosocial carecare • Frequently ignore ‘illness narratives’ / meanings that govern how we comprehend/accommodate illness: –“Pain is whatever the experiencing person says it is, and its as bad as they say it is” (McCaffery & Thorpe 1988)
    30. 30. www.kcl.ac.uk/palliative Clinical assessment of painClinical assessment of pain • Why do you think you have this pain? • What does your pain mean for your body? • How severe is your pain? How long do you think it will last? • Do you have any fears about your pain? If so, what do you fear most? • What kind of treatment do you think you should receive? • What results do you hope to receive from your treatment? • What cultural remedies have you tried to help with your pain?
    31. 31. www.kcl.ac.uk/palliative

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