The experience and expression of pain: does ethnicity and culture make a difference?
Dignity of Difference: 5th November 2010
Dr Jonathan KoffmanDepartment of Palliative Care, Policy and Rehabilitation
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What exactly do race, ethnicity and culture mean to you?
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Understanding diversity and conceptual Understanding diversity and conceptual sloppiness sloppiness
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Race: a bio-scientific concept with an inglorious Race: 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)
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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
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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)
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Pain and BME populationsPain and BME populations
• Sub-therapeutic care• Experimental/genetic
explanations• Cultural ‘shaping’• Communication and
pain assessment• Healthcare system
factors
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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)
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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)
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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
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Sub-therapeutic treatment of cancer painSub-therapeutic treatment of cancer painCleeland 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 AfricanAmerican patients, 94Hispanic patients, and 16patients of other minorityethnicity 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
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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
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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
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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)
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The presentation of private and public The 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)
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The presentation of private and public painThe presentation of private and public pain
INDIVIDUAL SOCIETYResponse to pain
behaviour (s)
Pain behaviour(s)
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The experience and expression of cancer-related painThe experience and expression of cancer-related pain
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• 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
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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
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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)
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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)
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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)
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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)
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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
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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)
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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)
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Implications for clinical/psychosocial Implications 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
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Implications for clinical/psychosocial Implications 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)
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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?
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