Although few people die of Pain, Many die in Pain And even more live in Pain

1. Do People Know
About Pain and Its
Management?
Dr Mary Suma Cardosa
Selayang Hospital,
Selangor, Malaysia

2. Outline
• What do people need to know about pain?
– Pain relief as a human right
– Effects of unrelieved pain
– Differences between acute and chronic pain
• What do people really know about pain?
– Healthcare providers
– Patients
• How do we address the gaps?

3. Outline
• What do people need to know about pain?
– Pain relief as a human right
– Differences between acute and chronic pain
– Effects of unrelieved pain
• What do people really know about pain?
– Healthcare providers
– Patients
• How do we address the gaps in
knowledge and attitude?

4. 2004

6. ―We all must die. But that I can save
him days of torture, that is what I feel
is my great and ever new privilege.
Pain is a more terrible lord of
mankind than even death itself.‖
Albert Schweitzer

7. 2010

8. Outline
• What do people need to know about pain?
– Pain relief as a human right
– Effects of unrelieved pain
– Differences between acute and chronic pain
• What do people really know about pain?
– Healthcare providers
– Patients
• How do we address the gaps in
knowledge and attitude?

9. Adverse effects of
severe acute pain
CVS
Increased
sympathetic
activity
Myocardial
O2 demand
MI
RS
Splinting
shallow
breathing
Atelactasis
hypoxaemia
hypercarbia
Pneumonia
GI
Impairs GI
motility
Constipation
Delays
recovery
General &
MSK
Increased
catabolic
demands
Poor wound
healing and
muscle
weakness
Weakness
&impaired
rehabilitation
Psychologi-
cal
Anxiety and
fear
Sleepless
ness &
helplessnes
s
Psychologi-
cal stress
Neuro-
plasticity
Peripheral
sensitization
Central
sensitization
P5VS: Doctors’ training module
Chronic pain

10. Worldwide Impact Of Chronic
Pain
Gujere O, et al. 1998
Depression Poor health Work
impaired
Activity
limited
Chronic pain
No pain
0
20
30
50
10
Primary care attendees (%)
40
WHO Collaborative Study of Psychological Problems in General Health

11. Pain Interference with Daily Activities
18.6
39.4
25.3
9.6
7.2
0 10 20 30 40 50
Not at all
A little
Moderate
Quite a lot
Extreme
3rd National Health and Morbidity Survey, Malaysia, 2006

12. Impact of chronic pain on daily activities
Breivik H, et al. Eur J Pain 2006;10:287–333.

13. Outline
• What do people need to know about pain?
– Pain relief as a human right
– Effects of unrelieved pain
– Differences between acute and chronic pain
• What do people really know about pain?
– Healthcare providers
– Patients
• How do we address the gaps in
knowledge and attitude?

14. NOT ALL PAIN IS THE SAME!

15. Cancer pain
Pain
Chronic painAcute pain
Nociceptive
pain
Neuropathic
pain
Widespread
pain
Non-Cancer pain

16. Acute Vs Chronic Pain
ACUTE PAIN
• Physiological
– Normal nociceptor
response
• Protective
• Pain = damage
• Diminishes when
healing takes place
CHRONIC PAIN
• Pathological
– Changes at periph, sp
cord and brain
• Not protective
• Pain  damage
• Healing period over
but pain persists

17. Chronic pain as a Disease
Chronic pain
SYMPTOM
DISEASE

18. Pain
What the patient says hurts.
What must be treated.
Injury
Other illnesses
Coping strategies
Social factors
e.g. family, work
Biopsychosocial model
Nociception is not the same as pain!
Modified from Analgesic Expert Group. Therapeutic Guidelines 2007
Beliefs/concerns
about pain
Psychol. factors
anxiety/anger/depression
Cultural issues
Language, expectations

19. WHAT HAPPENS WHEN PAIN
BECOMES CHRONIC?

20. Sensitization
- Periphery
- central
WHAT HAPPENS
WHEN PAIN
SIGNALS GO ON
FOR A LONG
TIME?
Pain

21. PAIN IS NO LONGER A
SIGNAL OF DAMAGE
Chronic pain
TISSUE
DAMAGE
―WRONG
SIGNAL‖

22. HOW DO WE MANAGE THE
DIFFERENT TYPES OF PAIN?

23. TRADITIONAL /
COMPLEMENTARY
MEDICINE
MULTIDISCIPLINARY MANAGEMENT OF PAIN
PAIN
MEDICATIONS
PSYCHOLOGICAL
METHODS
SURGERY
ASSESSMENT
PHYSIOTHERAPY
Occupational
therapy
Functional improvement
Quality of Life
INTERVENTIONS
(INJECTIONS)
PAIN
PERSON
WITH
PAIN

24. ACUTE
PAIN
MULTIDISCIPLINARY MANAGEMENT OF PAIN
PSYCHOLOGY
ASSESSMENT PHYSIOTHERAPY
(passive)
Occupational
therapy
Functional improvement
INTERVENTIONS
(INJECTIONS)
Traditional
medicineSURGERY
PAIN
MEDICATIONS

25. MULTIDISCIPLINARY MANAGEMENT
PAIN
MEDICATIONS
PSYCHOLOGICAL
THERAPY
SURGERY
ASSESSMENT
PHYSIOTHERAPY
Occupational
therapy
IMPROVEMENT IN
QUALITY OF LIFE
TRADITIONAL /
COMPLEENTARY
MEDICINE
INTERVENTIONS
(INJECTIONS)
CANCER
PAIN

26. MULTIDISCIPLINARY MANAGEMENT OF PAIN
PAIN
MEDICATIONS
SURGERY
ASSESSMENT PHYSIOTHERAPY
(active)
Occupational
therapy
LONG TERM improvement
-Function and Quality of Life
INTERVENTIONS
CHRONIC
PAIN TRADITIONAL /
COMPLEENTARY
MEDICINE
PSYCHOLOGICAL
METHODS

27. Treatment:
Acute Vs Chronic Pain
ACUTE PAIN
• Analgesics, rest
appropriate
– Short term: not required
when healing complete
– Main goal is pain relief
– Function usually
restored back to normal
after healing
• Responsibility more on
healthcare provider
(patient has a more
passive role)
CHRONIC PAIN
• Analgesics, rest not
appropriate
– Pain will persist
– Problems of long term
drug use / disability
– Goal of treatment is to
IMPROVE
FUNCTION, not just to
provide pain relief
• Responsibility is more
on the patient (active
role)

28. Outline
• What do people need to know about pain?
– Pain relief as a human right
– Differences between acute and chronic pain
– Effects of unrelieved pain
• What do people really know about pain?
– Healthcare providers
– Patients
• How do we address the gaps in
knowledge and attitude?

29. • Survey of attitude and knowledge of
healthcare providers on Pain as the 5th
Vital Sign in Malaysian Ministry of Health
Hospitals, 2012

30. Access to Pain Treatment as a Human Right
“Please, do not make us suffer
anymore…….”
http://www.hrw.org/en/reports/2 In this 47-page report Human Rights Watch said
that countries could significantly improve access to pain medications by
addressing the causes of their poor availability. These often include the failure to
put in place functioning supply and distribution systems; absence of government
policies to ensure their availability; insufficient instruction for healthcare workers;
excessively strict drug-control regulations; and fear of legal sanctions among
healthcare workers.
009/03/02/please-do-not-make-us-suffer-any-more

31. http://www.hrw.org/sites/default/files/reports/health1009webwcover.pdf

32. Prevalence and correlates of pain in
the Canadian National Palliative
Care Survey
Wilson, et al., Pain Res. Manag. 2009;14:365-70
• 70% had pain of any intensity
• 33.9% reported moderate to severe pain

33. Cancer-related pain: A pan-European Survey of
prevalence, treatment and patient attitudes
Breivik H, et al. Ann Oncol. 2009;8:1420-33
 5084 patients studied
--56% suffered moderate to severe pain
 573 patients studied
– 77% receiving prescription-only analgesics
– 40% taking strong opioids alone or with other
combinations
– 63% experienced breakthrough pain
– 69% reported pain-related difficulties with everyday
activities

34. Undertreatment of Cancer Pain
in United States
2011 : Medical oncology outpatient
survey:
67% reported pain, 33% received
inadequate prescribing
2011: Medical Oncologists survey:
Response to two vignettes: 60% and
80% responded inadequately

35. Fibromyalgia: SE Asia FACTS
study
 Fibromyalgia is a debilitating chronic pain
condition and has a negative impact on patients'
quality of life
 Patients with fibromyalgia report serious financial
consequences from the condition, including an
inability to work
 It often takes a long time and many physicians for
patients to receive an accurate diagnosis of
fibromyalgia
 There is a potential need for more training of
physicians for them to recognize and effectively
treat fibromyalgia
 More understanding and awareness of
fibromyalgia is needed for early detection and
treatment
Marker Research Survey of 506 physicians & 941 pts, in 5 SEA countries (2009)
Findings Courtesy of Pfizer

38. Hospital Selayang
Phenomenological study of chronic pain
patients
• Impact of chronic pain on self
– Loss of health
• Pain interference with usual activities
• Feeling of being worn out and sickly
– Loss of independence & control
– Isolation
– Depression
– Loss of self worth
Anna Wong SM, Masters Thesis 2014

39. Hospital Selayang
Phenomenological study of chronic pain
patients
• Impact of chronic pain on others
– Family
• Pain binds families together –help from family members
• Pain causes worries in caregivers (and guilt in patient)
• Lack of understanding
• Dependence
• Change in roles
– Healthcare providers
• Lack of effective communication by some, good
communication by others
• Doctors’ disbelief; Inaccurate diagnosis
• Kind doctors / nurses
• Self-management skills
Anna Wong SM, Masters Thesis 2014

40. Hospital Selayang
Phenomenological study of chronic pain
patients
What helps them to cope?
•Social support, acceptance and understanding
– Family, friends, co-workers, employers, HCP
•Understanding and accepting their pain
– Clear explanation by HCP
•Physical therapy
•Psychological techniques
– ―positive thinking‖
•Spirituality
Anna Wong SM, Masters Thesis 2014

41. COMPETING MINDSETS IN COPINGWITH CHRONIC PAIN
AMONG FILIPINO OLDER PERSONS
A PHENOMENOLOGICAL INQUIRY
Calimag MMP1,2,3, Calimag AP3,Ang JM3, De Mesa M3, Mandapat J3, Ong A3
1Research Cluster for Culture, Education, and Social Issues, 2Research Center for the Health Sciences,
3UST Faculty of Medicine and Surgery; University of Santo Tomas, Philippines
Background: The older person belongs to a very vulnerable population, deprived of voice…not
just the physical voice but most importantly, the metaphorical voice as well. There are various forms
of suffering that come with age. Advancing age is associated with a higher prevalence of pain, and
although people older than 60 years old are more likely to experience chronic pain symptoms than
younger adults are, they are less likely to obtain pain relief in response to therapy (Rouff 2002). It is
not only the physical aches and pains but the fear, the loss of control, the sense of helplessness,
mental anguish and the dread of impending death.The culture of the health practitioner is often one
that denies the reality of sickness and death. Medicine glorifies youth and health, often shoving the
older persons and their sufferings to the sidelines…a patient’s identity reduced to a particular
physical ailment.
Purpose: This phenomenological inquiry explores the personal meaning
of chronic pain in the older person relative to the central question: What
competing mindsets do Filipino elderly patients portray in collectively
characterizing their lived experience of chronic pain.
Method: The chronic illness experiences of a purposive sample of
six older pain patients were evoked through semi-structured
interviews to identify how they respond and cope with their
chronic pain.
Results: Using Colaizzi's (1978) descriptive
phenomenologic methodology, the competing
mindsets evolved were clustered into three central
themes: HAND to seclude or to secure whereby
patients either choose to suffer their pain alone or
seek the help of physicians and significant others;
HEAD to suffer or to supplicate whereby patients
HAND
TO SECLUDE ORTO SECURE
“Never mind, I just keep the pain and hurt to myself”
versus
“I trust my doctor to tell me the truth about my pain”
HEAD
TO SUFFER ORTO SUPPLICATE
“I do not know if I can endure this much longer”
versus
“…I just pray, I want to do penance for my sins, I know
that the Lord will give me strength”
H CHRONIC PAIN
SONS
UIRY
Mandapat J3, Ong A3
nter for the Health Sciences,
mas, Philippines
s
HAND
TO SECLUDE ORTO SECURE
“Never mind, I just keep the pain and hurt to myself”
ain pain relief in response to therapy (Rouff 2002). It is
fear, the loss of control, the sense of helplessness,
eath.The culture of the health practitioner is often one
Medicine glorifies youth and health, often shoving the
lines…a patient’s identity reduced to a particular
logical inquiry explores the personal meaning
person relative to the central question: What
no elderly patients portray in collectively
perience of chronic pain.
experiences of a purposive sample of
oked through semi-structured
respond and cope with their
) descriptive
he competing
into three central
secure whereby
their pain alone or
ignificant others;
whereby patients
re or to lift up their
HAND
TO SECLUDE ORTO SECURE
“Never mind, I just keep the pain and hurt to myself”
versus
“I trust my doctor to tell me the truth about my pain”
HEAD
TO SUFFER ORTO SUPPLICATE
“I do not know if I can endure this much longer”
versus
“…I just pray, I want to do penance for my sins, I know
that the Lord will give me strength”
HEART
of sickness and death. Medicine glorifies youth and health, often shoving the
ir sufferings to the sidelines…a patient’s identity reduced to a particular
se: This phenomenological inquiry explores the personal meaning
nic pain in the older person relative to the central question: What
ing mindsets do Filipino elderly patients portray in collectively
erizing their lived experience of chronic pain.
The chronic illness experiences of a purposive sample of
n patients were evoked through semi-structured
o identify how they respond and cope with their
.
g Colaizzi's (1978) descriptive
c methodology, the competing
ed were clustered into three central
to seclude or to secure whereby
choose to suffer their pain alone or
f physicians and significant others;
or to supplicate whereby patients
o physically endure or to lift up their
ugh prayers; and HEART to succumb
whereby patients either choose to
HAND
TO SECLUDE ORT
“Never mind, I just keep the pain
versus
“I trust my doctor to tell me the tr
HEAD
TO SUFFER ORTO SUPPLICATE
“I do not know if I can endure this much longer”
versus
“…I just pray, I want to do penance for my sins, I know
that the Lord will give me strength”
HEART
TO SUCCUMB ORTO S
“I would rather die than suffe
e sidelines…a patient’s identity reduced to a particular
menological inquiry explores the personal meaning
der person relative to the central question: What
Filipino elderly patients portray in collectively
d experience of chronic pain.
ess experiences of a purposive sample of
e evoked through semi-structured
they respond and cope with their
978) descriptive
gy, the competing
ered into three central
r to secure whereby
fer their pain alone or
nd significant others;
cate whereby patients
ndure or to lift up their
nd HEART to succumb
ients either choose to
vercome the pain
HAND
TO SECLUDE ORTO SECURE
“Never mind, I just keep the pain and hurt to myself”
versus
“I trust my doctor to tell me the truth about my pain”
HEAD
TO SUFFER ORTO SUPPLICATE
“I do not know if I can endure this much longer”
versus
“…I just pray, I want to do penance for my sins, I know
that the Lord will give me strength”
HEART
TO SUCCUMB ORTO SURMOUNT
“I would rather die than suffer this pain”
versus
“I will be strong and overcome my feelings of depression”

42. (71.6)
239 276
174
186
193
216
157
169 153
168
213
235
170
191
17 17
81
109
60
78
97
121 102
126
40
58
81
102
40%
50%
60%
70%
80%
90%
100%
P5VS ✔P5VS ✖P5VS ✔P5VS ✖P5VS ✔P5VS ✖P5VS ✔P5VS ✖P5VS ✔P5VS ✖P5VS ✔P5VS ✖P5VS ✔P5VS ✖
Pain assessment
should be done
on admission
We should not
give patients too
much pain
medicine
because there is
a high risk of
addiction
Pain assessment
should only be
done when the
patients
complains of pain
If pain relief is
given to the
patient regularly
it may mask the
signs of
complications or
worsening
disease
Analgesics
should only be
given to patients
when they
complain of pain
A patient who
keeps asking for
analgesia must
be addicted to
the pain
medication
Patient should
only be started
on morphine
when pain
becomes
unbearable
Correct
Wrong

43. Slide courtesy of Dr Richard Lim

46. 1. We try really hard to look good.
Tea Lynn Moore
http://www.thepainrelieffoundation.com/patient-perspectives/want-you-to-know/
At times we hurt so much
and are tired from trying
to play healthy that we
feel like laying down right
then and there

47. 16 Things People in Chronic
Pain Want You to Know
1. We try really hard to look good.
2. It’s not all in our heads.
Tea Lynn Moore
http://www.thepainrelieffoundation.com/patient-perspectives/want-you-to-know/

48. 16 Things People in Chronic
Pain Want You to Know
1. We try really hard to look good.
2. It’s not all in our heads.
3. We are not making a mountain out a of
molehill.
Tea Lynn Moore
http://www.thepainrelieffoundation.com/patient-perspectives/want-you-to-know/

49. 16 Things People in Chronic
Pain Want You to Know
1. We try really hard to look good.
2. It’s not all in our heads.
3. We are not making a mountain out a of
molehill.
4. No matter how long we’ve been suffering for, it
still hurts.
Tea Lynn Moore
http://www.thepainrelieffoundation.com/patient-perspectives/want-you-to-know/

50. 16 Things People in Chronic
Pain Want You to Know
1. We try really hard to look good.
2. It’s not all in our heads.
3. We are not making a mountain out a of
molehill.
4. No matter how long we’ve been suffering for, it
still hurts.
5. Sometimes we just don’t have the spoons.
―Spoon theory‖
 when you have a chronic condition you wake up each day with a
certain number of spoons. Every time you exert effort — by getting
out of bed, cleaning, getting dressed — you lose a spoon. When
you run out of spoons, that’s it, the day’s activities are doneTea Lynn Moore
http://www.thepainrelieffoundation.com/patient-perspectives/want-you-to-know/

51. 16 Things People in Chronic
Pain Want You to Know
1. We try really hard to look good.
2. It’s not all in our heads.
3. We are not making a mountain out a of
molehill.
4. No matter how long we’ve been suffering for, it
still hurts.
5. Sometimes we just don’t have the spoons.
6. We’re not lazy - In fact, we often have to work
twice as hard to accomplish the tasks that most
people do easily.
Tea Lynn Moore
http://www.thepainrelieffoundation.com/patient-perspectives/want-you-to-know/

52. 16 Things People in Chronic
Pain Want You to Know
7. If we don’t have a job it’s for a reason
8. It’s really hard to get out of bed in the morning…
and always!
Tea Lynn Moore
http://www.thepainrelieffoundation.com/patient-perspectives/want-you-to-know/

53. 16 Things People in Chronic
Pain Want You to Know
7. If we don’t have a job it’s for a reason
8. It’s really hard to get out of bed in the morning…
and always!
9.Every minute feels like an eternity when waiting.
10.We are not ignoring you.
- Pain can be very distracting and mentally draining. We try
our best to stay sharp and attentive but if we seem not to
fully be there please don’t take it personally.
Tea Lynn Moore
http://www.thepainrelieffoundation.com/patient-perspectives/want-you-to-know/

54. 16 Things People in Chronic
Pain Want You to Know
7. If we don’t have a job it’s for a reason
8. It’s really hard to get out of bed in the morning…
and always!
9.Every minute feels like an eternity when waiting
10.We are not ignoring you
11. We get REALLY excited when we have a good
day
12.And get really bummed when we have a bad
day and can’t do the things we love
Tea Lynn Moore
http://www.thepainrelieffoundation.com/patient-perspectives/want-you-to-know/

55. 16 Things People in Chronic
Pain Want You to Know
13.It can be hard to find a good doctor
14.We are not drug seekers - We are pain
relief seekers.
15. You don’t need to give us suggestions or
medical advice
16. All we really need is your love and
support.
Tea Lynn Moore
http://www.thepainrelieffoundation.com/patient-perspectives/want-you-to-know/

56. Outline
• What do people need to know about pain?
– Pain relief as a human right
– Differences between acute and chronic pain
– Effects of unrelieved pain
• What do people really know about pain?
– Healthcare providers
– Patients
• How do we address the gaps?

57. Education
Research and
Implementation
Medicine
Availability
WHO Public Health Model
Policy
C
o
n
t
e
x
t
O
u
t
c
o
m
e
s

58. US Efforts to Improve Cancer
Pain
• 2011 IOM Report: Relieving Pain in
America
• 2013 Development of a National Pain
Strategy
• Funding to the NIH Pain Consortium
• 2014 IOM Report Dying in America

59. US Efforts to Improve Cancer
Pain
PAINS Alliance of Pain groups to
improve pain care for all
ACS Quality of Life Initiative
 Achieving Balance in State Pain Policy
Report Cards PPSG University of
Wisconsin

60. Pain Treatment and Right to Health
• Opioids are essential medicines and countries
need to provide them as a core obligation under
the right to health
• States must put in place an effective
procurement and distribution system
• Create a legal and regulatory framework
• Allow health care professionals to prescribe and
dispense
• Drugs do not have to be free but affordable

61. UN and WHO Resolutions
2010 WHA Resolution on Cancer included
palliative care
2012 UN Resolution on Universal Health Care
2012 WHA Resolution on Non-Communicable
Diseases (NCD”s) includes palliative care
2014 WHA Resolution on Palliative Care
61

62. World Health Organization
Resolution 2014

63. Patient in South India presenting at a palliative care clinic

64. Patient after a dose of morphine sitting up and enjoying tea

67. Chronic
pain
Reduced
activity
Unhelpful
thoughts &
beliefs
Repeated
treatment
failures
Long term
analgesics /
sedatives
Loss of job,
financial &
family stress
Excessive
suffering
Feelings of
depression,
helplessness,
irritability
S/E of drugs
e.g. constipation,
lethargy, gastric
ulcers
Physical deterioration
e.g. ms wasting, joint
stiffness
OVERVIEW OF PROBLEMS CAUSED BY CHRONIC PAIN

68. Chronic
pain
Reduced
activity
Unhelpful
thoughts &
beliefs
Repeated
treatment
failures
Long term
analgesics /
sedatives
Loss of job,
financial &
family stress
Excessive
suffering
Feelings of
depression,
helplessness,
irritability
S/E of drugs
e.g. constipation,
lethargy, gastric
ulcers
Physical deterioration
e.g. ms wasting, joint
stiffness
OVERVIEW OF PROBLEMS CAUSED BY CHRONIC PAIN
X
X
X
X
X
X
X
X
X

69. PAIN SELF MANAGEMENT
• Education –
Understanding
difference between
acute and chronic pain
• Relaxation
• Exercise
• Pain Management
Skills

70. JA, F, 38 years, chronic back pain
after a fall in 2000
“After the fall, I had severe pain in my back, I could not
breathe, I could not hear or talk. I went to the hospital and
they told me I had compression fracture of the spine. I
was given pain killers but the pain never went away.
“Because of the pain, I used to have so much problem - I
could not walk very far, I could not sit or stand for very
long, I could not do much for myself.
“After I attended the Pain Management Program, I realised
that I have to learn to manage the pain myself. I started
doing regular exercise, stretching, walking and relaxation
(breathing).. Now I have no problems sitting and standing
for a long time, and I can walk as fast as I could before the
accident. I don’t take any more pain killers.”

71. ML, M, 46 y, chronic back pain
• Unemployed for many years, and
taking a lot of medication because
of his pain. Had back surgery with
no relief.

72. ML, M, 46 y, chronic back pain
“I feel that the pain is hell, a kind of torture, and I feel it myself
only - no one else knows. Not even my loved ones understand
me. We are in different worlds - I am in pain all the time, they
are not; there is no common ground between us.
“I used to take more than the prescribed dose of pain killers, and
lie in bed the whole day. I was angry with the whole world.
“Luckily I learnt about pain management and now, although I still
have pain, I don’t take medication any more. When the pain is
bad, I do my stretches and relaxation, and it’s like a miracle
happens. The pain is under control and I can go on.”

73. Although few
people die of Pain,
Many die in Pain
And even more live
in Pain
EFIC declaration,
Global Day Against
Pain, 2004