The Experience and Expression of Pain

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

www.kcl.ac.uk/palliative

What exactly do race, ethnicity and culture mean to you?


Understanding diversity and conceptual Understanding diversity and conceptual sloppiness sloppiness


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)


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


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)


Pain and BME populationsPain and BME populations

• Sub-therapeutic care• Experimental/genetic

explanations• Cultural ‘shaping’• Communication and

pain assessment• Healthcare system

factors


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)


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)


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


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


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


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


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)


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)


The presentation of private and public painThe presentation of private and public pain

INDIVIDUAL SOCIETYResponse to pain

behaviour (s)

Pain behaviour(s)


The experience and expression of cancer-related painThe experience and expression of cancer-related pain


• 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


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


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)


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)


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)


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)


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


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)


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)


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


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)


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?

The Experience and Expression of Pain

Education

Transcript of The Experience and Expression of Pain