The experience and expression of pain:
the influence of culture and ethnicity
and implications for palliative care
Dr Jonathan Koffman
Department of Palliative Care, Policy and Rehabilitation
www.kcl.ac.uk/palliative
Advanced 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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Pain and BME populations
• Sub-therapeutic care
• Healthcare system
factors
• Communication and
pain assessment
• Experimental/genetic
explanations
• Culturally patterned
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Sub-therapeutic treatment
Cleeland 1,300 racially/ethnically
et al. 1994 diverse out-patients in 54
USA treatment locations
Cleeland 216 patients (106 African
et al. 1997 American patients, 94
Hispanic patients, and 16
patients of other minority
ethnicity groups)
Anderson 108 African-American and
et al. 2000 Hispanic patients
Hispanic and African American
patients 3 times more likely to
be under-medicated than white
patients
72% Hispanic & 59% African
American patients received
inadequate patient relief
according to WHO guidelines
28% Hispanic & 31% African
American patients received
analgesics insufficient to
manage pain
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%
Older people: treatments not used: pharmacological
treatment of cancer patients with
p
pain in US nursing homes according to the WHO pain ladder Source: Bernabei et al.,
JAMA 1998;279(23):1877-1822
65-74 yrs 75-84 yrs
50
85+ yrs
40
30
20
10
0
No analgesia
Acetaminophen
Combination Agents
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Opioids
Communication and pain assessment
• 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 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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Experimental/genetic explanations
• Pain thresholds:
– lower tolerances to multiple
pain tasks in African
Americans compared to nonHispanic whites (Campbell,
Pilligim & Edwards 2003)
• Polymorphisms
• Pharmacogenetics
• Pharmacogenomics
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Interface 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 - take place within
social context:
– patterned and shaped by cultural factors (Helman 1990)
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The presentation of private and public pain
• 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 pain
Pain behaviour(s)
INDIVIDUAL
SOCIETY
Response to pain
behaviour (s)
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The experience and expression of cancer related pain
pain
35
'very distressing'
30
25
20
15
10
5
B la
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Br
i te
Wh
ck
Ca
r ib
be
an
it i s
h(
( n=
n=
34
)
35
)
0
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The experience and expression of pain
• 23/26 Black Caribbean and 15/19 White
British patients reported experiencing pain
• Pain descriptors included:
awful
dull
nagging
terrible
bubbling
excruciating
nuisance
troubling
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burning
mingling
pulling
stabbing
Meanings of pain
Meaning
Description
Pain as a challenge Task or hurdle that needs to
be overcome
Sub-categories
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
Characterised by theme of
wrongdoing
Justified or unjustified
punishment
Pain as a
punishment
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Unable to overcome test of
faith
Pain 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 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 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’ 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
Accommodation of
symptom-related
distress not achieved
Cancer-related
pain
Interpretation and
response to pain
Possible influences: gender,
age, social class, culture and
ethnicity
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Normalisation of
symptom-related
distress
Implications for clinical/psychosocial care
• 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 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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