all about palliative care

1. Concepts of Palliative Care
p
And PC Overview in Kenya

2. Palliative Care in Kenya-History
Palliative Care in Kenya History

3. Global scenario
Global scenario
• According to the International Union against
g g
Cancer (UICC) report, CANCER is the leading
cause of death globally.
I d f 7 9 illi d h ( d 13% f
• It accounted for 7.9million deaths (around 13%of
all deaths) in 2007.
• The number of deaths due to Cancer is set to
• The number of deaths due to Cancer is set to
surpass those of HIV/Aids, Tuberculosis and
Malaria combined.
• Cancer affects every body regardless of social
class, race, gender or age.

4. Cancer and HIV AIDS in Kenya:
th lit
the reality
• Cancer and HIV/AIDS have become the commonest life
threatening illnesses in sub-Saharan Africa in the 21st
t (WHO 2002)
century (WHO 2002).
• 1.4 million Kenyans are living with HIV/AIDS and require
palliative care (KAIS 2007)
palliative care (KAIS 2007).
• 7.8 % of Kenyan adults aged between 15-64 are infected
with HIV (KAIS 2007)
t ( S 200 )
• Every year, there are approximately 85,000 new cases of
cancer in Kenya (WHO)
• Most cancers in Kenya are diagnosed late resulting in a
shift of treatment goals from cure to palliation.

5. Disease burden in Africa
Disease burden in Africa
• Three-quarters of cancer deaths occur in
q
developing countries where the resources
needed to prevent, diagnose and treat cancer
are severely limited.
y
• The World Health Organization (WHO) projects
th t th t t Af i ill
that over the next ten years Africa will
experience the largest increase in death rates
from cardiovascular diseases, cancer,
i di d di b
respiratory diseases and diabetes
WHO: Preventing Chronic Disease. A vital investment Geneva: WHO; 2005.
g ;

6. • Most patients with cancer or HIV/AIDS will
Most patients with cancer or HIV/AIDS will
suffer from severe pain due to:
• the disease itself
• other concurrent illnesses
• the medication they are taking
the medication they are taking
• Over 80% of patents with cancer have
moderate to severe pain
p
• Over 50% 0f PLWHIV have moderate to
severe pain
p

7. Estimate of the burden of pain and end of life care
for Cancer & HIV/AIDS in developing countries
for Cancer & HIV/AIDS in developing countries
Prevalence of moderate to
severe pain in terminal phase
Terminal
patients
Diseases
50%
%
1,433,000
N°
N°
2,866,000
HIV/AIDS
80% 2,880,000
3,600,000
Cancer
4,313,000
6,466,000
Total
Source: based on cancer and HIV/AIDS deaths in 2001 WHR 2002
Source: based on cancer and HIV/AIDS deaths in 2001, WHR 2002

8. PALLIATIVE CARE
PALLIATIVE CARE
Its origin is in the Latin word pallium, meaning a
g p , g
cloak. It means to mitigate the sufferings of the
patient, not to necessarily effect cure.
HOSPICE
• Not a building
• Not a building.
• Is a philosophy of care,

9. HOSPICE
HOSPICE
• “Hospes” Greek
Hospes Greek
• “Hospitium” Latin Hospitality
Hospice
Hospital:
Hospital:
(reformation)

10. PALLIATIVE CARE HAS TWO
ESSENTIALS
• Supportive care (present in and home care teams before the
advent of PC)
advent of PC)
• Pain and symptom control using the methods researched since
1967
• The following are not palliative care:
¾ Supportive care without pain and symptom control using the
researched methods
¾ Pain and symptom control without supportive and holistic care
¾ Pain and symptom control without supportive and holistic care
• Pain and symptom control is being grafted onto supportive
programmes in Kenya
p g y

11. Palliative Care
Palliative Care
Palliative Care is an approach that
improves the Quality of Life of
improves the Quality of Life of
Patients and their Families facing the
problems associated with life-
problems associated with life
threatening illness, through the
Prevention and Relief of Suffering by
Prevention and Relief of Suffering by
means of early identification and
impeccable Assessment and
impeccable Assessment and
Treatment of Pain and other
problems, Physical, Psychosocial and
problems, Physical, Psychosocial and
Spiritual. Revised 2002. Sepulveda et al.
JPSM 2002; 24: 91-96

12. Palliative care
P id li f f i d h
• Provides relief from pain and other
distressing symptoms
• Affirms life and regards dying as a normal
Affirms life and regards dying as a normal
process;
• Intends neither to hasten or postpone
death;
death;
• Integrates the psychological and spiritual
aspects of patient care;
p p ;
• Offers a support system to help patients live
as actively as possible until death;
• Offers a support system to help the family
• Offers a support system to help the family
cope during the patient’s illness and in
their bereavement;

13. Palliative care…….
• Uses a team approach to address the needs
Uses a team approach to address the needs
of patients and their families, including
bereavement counseling, if indicated;
• Will enhance the quality of life, and will also
iti l i fl th f ill
positively influence the course of illness;
• Is applicable early in the course of illness
• Is applicable early in the course of illness,
in conjunction with other therapies that are
implemented to prolong life, such as
p p g
chemotherapy or radiation therapy, and
includes those investigations needed to
better understand and manage distressing
better understand and manage distressing
clinical complications

14. • Palliative care for children is the active total care
of the child’s body, mind and spirit, and also
involves giving support to the family.
• It begins when illness is diagnosed, and continues
regardless of whether a child receives treatment
di d h di
directed at the disease.
• Health providers must evaluate and alleviate a
p
child’s physical, psychological and social distress.
• Effective palliative care requires a broad
Effective palliative care requires a broad
multidisciplinary approach that includes the family
and makes use of available community resources;
it can be successfully implemented even if
li i d
resources are limited.
• It can be provided in tertiary care facilities, in
p y ,
community health centres, and even in children’s
homes. (WHO August 2002)

15. Special Principles of PC for
patients with HIV/AIDS
patients with HIV/AIDS
Comprehensive PC for PLWH should
Comprehensive PC for PLWH should
integrate:
• HIV Prevention and Counselling
• HIV Prevention and Counselling
• OI prophylaxis and treatment
• ARV therapy
• Palliative care

16. There is no contradiction between ARV
therapy and PC A balance always should
therapy and PC. A balance always should
be sought between disease –modifying
(ARV) therapy curative therapy of acute
(ARV) therapy, curative therapy of acute
complications such as OIs and palliative
care
care
• Every effort should be made to treat AIDS pts with
ARV therapy
P i & th di t i t th d
• Pain & other distressing symptoms, weather caused
by the disease or side effects of medications, should
be treated at any stage of HIV disease
• In later stages of progressive HIV Disease, many
patients will have an increasing need for PC including
comprehensive symptom control and psychosocial
support

17. Essential components of
palliative care
p
• Pain and Symptom control
• Effective communication
Effective communication
• Rehabilitation
• Continuity of care
B ki b d
• Breaking bad news
• Psychosocial care
• Spiritual care
• Social care
• Terminal care/ End of life care
• Support in bereavement
Support in bereavement
• Education
• Research

18. A MODEL OF COMPREHENSIVE
PALLIATIVE CARE
C lt ral
Cultural
Physical
Spiritual
Psychological
Social

19. Quality of life and suffering?
Quality of life and suffering?
Multidimensionality !
Somatic
y
Functional
Spiritual
Suffering
P hi
E i t ti l Psychic
Social
Existential
19

20. Total PAIN
PHYSICAL
PAIN
PAIN
EMOTIONAL
PSYCHOSOCIAL
EMOTIONAL
SPIRITUAL

21. h i l d
h i l d?
?
Who is Involved
Who is Involved?
?

22. THE CARING TEAM
THE CARING TEAM
D
Nutritionist
Physio/
Occup. therapists
Drs,
Nurses
Pharmacists
Volunteers/
it
p p
patient
Pharmacists
Family/friends
community
patient
&
Patient
Social
worker
Religious person

23. HOLISTIC APPROACH
HOLISTIC APPROACH
•
• Refers to caring for a patient as a
Refers to caring for a patient as a
g p
g p
whole being,
whole being, in totality
in totality, not only
, not only
physically
physically
•
• Attempts to understand the patient
Attempts to understand the patient
in the context of his/her
in the context of his/her
i
i
environment:
environment:
–
– Family
Family
–
– Social group
Social group
–
– Employment/school
Employment/school
p y /
p y /
–
– Culture
Culture

24. Holistic Care:
Holistic Care:
•
• Appreciates the patient’s
Appreciates the patient’s
Appreciates the patient s
Appreciates the patient s
specific needs and responds
specific needs and responds
to them individually
to them individually
•
• Uses a multidisciplinary
Uses a multidisciplinary
team to achieve total care for
team to achieve total care for
the patient and family
the patient and family

25. Goals of Palliative Care
Goals of Palliative Care
• Therefore the goal of palliative care is the
achievement of the best possible quality of
life for patients and their families
life for patients and their families
•
• Improve
Improve
–
– Quality of
Quality of
•
• Living
Living
D i
D i
•
• Dying
Dying
•
• Bereavement
Bereavement
Effectiveness of disease
Effectiveness of disease modifying therapy
modifying therapy
–
– Effectiveness of disease
Effectiveness of disease-
-modifying therapy
modifying therapy
•
• Prolong life
Prolong life
(P t lif i t th i d d t j t d i t
(Put life into their days, and not just days into
their lives)

26. Multiple Issues Cause Suffering
Multiple Issues Cause Suffering
Multiple Issues Cause Suffering
Multiple Issues Cause Suffering
Disease
Psychological
Physical
management
Psychological
Physical
Loss, grief Social
End of life /
death Practical Spiritual
death
management
Practical Spiritual

27. Who is Affected
Who is Affected
Who is Affected
Who is Affected

28. What People Want
What People Want
What People Want
What People Want
•
• Live life to the fullest
Live life to the fullest
–
– “ Fix ” disease
“ Fix ” disease
Fix disease
Fix disease
–
– Prevent, relieve suffering
Prevent, relieve suffering
U it d St t
U it d St t
•
• United States
United States
–
– 90 % believe it is a family responsibility to
90 % believe it is a family responsibility to
provide care to a loved one
provide care to a loved one
–
– 90 % want to die at home
90 % want to die at home
( NHO Gallup survey )
( NHO Gallup survey )

29. P lli ti C
P lli ti C
Palliative Care
Palliative Care
•
• prevent & relieve
prevent & relieve
•
• prevent & relieve
prevent & relieve
suffering
suffering
• help people achieve
• help people achieve
their full potential
their full potential
their full potential
their full potential
…in face of adversity
…in face of adversity
Adapted From: Ferris FD Balfour HM Bowen K Farley J Hardwick M Lamontagne C
Adapted From: Ferris FD Balfour HM Bowen K Farley J Hardwick M Lamontagne C
Adapted From: Ferris FD Balfour HM Bowen K Farley J Hardwick M Lamontagne C
Adapted From: Ferris FD Balfour HM Bowen K Farley J Hardwick M Lamontagne C
Adapted From: Ferris FD, Balfour HM, Bowen K, Farley J, Hardwick M, Lamontagne C,
Adapted From: Ferris FD, Balfour HM, Bowen K, Farley J, Hardwick M, Lamontagne C,
Lundy M, Syme A, West P. A Model to Guide Hospice Palliative Care.
Lundy M, Syme A, West P. A Model to Guide Hospice Palliative Care.
Ottawa, ON: Canadian Hospice Palliative Care Association, 2002.
Ottawa, ON: Canadian Hospice Palliative Care Association, 2002.
Adapted From: Ferris FD, Balfour HM, Bowen K, Farley J, Hardwick M, Lamontagne C,
Adapted From: Ferris FD, Balfour HM, Bowen K, Farley J, Hardwick M, Lamontagne C,
Lundy M, Syme A, West P. A Model to Guide Hospice Palliative Care.
Lundy M, Syme A, West P. A Model to Guide Hospice Palliative Care.
Ottawa, ON: Canadian Hospice Palliative Care Association, 2002.
Ottawa, ON: Canadian Hospice Palliative Care Association, 2002.

30. From a traditional towards a new care
model:
model:
From cure towards Care
Old concept
T
Terminal Care
Curative treatment Palliative Care
T
R
E
A
T
Ti
Death
M
E
N
New Care concept
Time
N
T
Curative
treatment
Palliative Care Post
Care
30
Lynn and Adamson, 2003
Care

31. Integration of curative and
palliative treatments
Old concept
T
Curatieve zorg Palliative
Proactive treatment
T
R
E
Care
Tijd
Proactive treatment
program
A
T
Death
new concept
Tijd
M
E
N
Disease oriented
treatment Symptom oriented care Berea
N
T
31
Lynn and Adamson, 2003
vement

32. Integration of curative and palliative
t t t
treatments
Old concept
T
Curatieve zorg Palliative
Proactive treatment acute
T
R
E
Care
Tijd
Proactive treatment
programm
acu e
and ad
hoc
inrterve
n tions
A
T
New concept
Tijd n-tions
M
E
N
Disease oriented
treatment
Symptom bereave
ment
N
T
32
support and
care
Lynn and Adamson, 2003
ment

33. The continuum of palliative
The continuum of palliative
care
Therapies to modify disease
(curative, restorative intent) Actively
Dying
Life
Closure
y g
Diagnosis Death
Bereavement
Care
Therapies to relieve
suffering, improve quality of Care
g, p q y
life

34. Disease-oriented
care
Care of orphans &
other vulnerable
children
Supportive & Palliative Care
Bereavement
Diagnosis Death
Bereavement
care
Diagnosis Death
Primary Health Care & Specialist care
Hospice care
Adapted from WHO

35. Who Public Health Model
Who Public Health Model

36. WHO F d i M
WHO F d i M
WHO Foundation Measures
WHO Foundation Measures
Drug Availability
Drug Availability
Education
Education
Government Policy
Government Policy

37. Public Health approach to PC
Public Health approach to PC

38. Integrating palliative care
Integrating palliative care
• To effectively integrate palliative care into a
y g p
society and change the experience of
patients and families, all four components
of the WHO Public Health Model must be
of the WHO Public Health Model must be
addressed. There must be
• 1) appropriate policies,
1) appropriate policies,
• 2) adequate drug availability,
• 3) education of health care workers and
)
the public, and
• 4) implementation of palliative care
i ll l l h h h
services at all levels throughout the
society.

39. Public Health Strategy
Public Health Strategy
For public health strategies to be effective, they
p g , y
must be incorporated by governments into all
levels of their health care systems and owned
by the community
by the community.
.

40. Palliative care for all
Palliative care for all

41. palliative care should be part
of a comprehensive care and support
package, which can be provided:
package, which can be provided:

42. • At home by caregivers
and relatives
and relatives.
Terminally ill patients
prefer to receive
care at home.
ca e a o e
The provision of
palliative care can be
palliative care can be
augmented significantly
by the involvement of family
and community caregivers.
y g

43. Aim of symptom management
i l di i i
including pain is to:
• improve the quality of life of patient and
improve the quality of life of patient and
family
• reduce suffering
g
• reduce uncertainties, reduce request for
euthanasia
• Comfort
• Sleep
p
• Prolong life
• pain free death
pain free death

44. Palliative care respects the goals, likes, and
choices of the ill /dying person. It…
• Respects patient’s needs and wants as well as
p p
those of their family and other loved ones.
• Finds out from the patient who they want to help
plan and give care.
plan and give care.
• Helps patients understand their illness and what
they can expect in the future.
H l ti t fi t h t i i t t
• Helps patients figure out what is important.
• Tries to meet patient’s likes and dislikes: where
they get health care, where they want to live, and
the kinds of services they want.
• Helps patients work together with their health care
provider and health plan to solve problems.
provider and health plan to solve problems.

45. Palliative care looks after the medical,
emotional, social, and spiritual needs of
the ill/ dying person. It…
• Knows that dying is an important time for the
i d h i f il
patient and their family.
• Offers ways for the PT to be comfortable and ease
pain and other physical discomfort.
• Helps the Pt and their family make needed changes
if the illness gets worse.
• Makes sure the Pt is not alone.
• Understands there may be difficulties, fears, and
painful feelings.
• Gives the Pt the chance to say and do what matters
y
most to them.
• Helps the Pt look back on their life and make
peace, even giving them a chance to grow.
p g g g

46. Palliative care supports the needs of
the family members. It…
• Understands that families and loved ones need
h l
help, too.
• Offers support services to family caregivers, such
pp y g ,
as time off for rest, and advice and support by
telephone.
• Knows that caregiving may put some family
members at risk of getting sick themselves. It plans
for their special needs.
• Finds ways for family members to cope with the
costs of caregiving, like loss of income, and other
g g
expenses.
• Helps family and loved ones as they grieve.

47. Palliative care helps gain access to needed
health care providers and appropriate care
settings. It…
• Uses many kinds of trained care providers--
y p
doctors, nurses, pharmacists, clergy, social
workers, and personal care givers. (Multidisplinary)
• Makes sure, if necessary, someone is in charge of
seeing that patients needs are met.
• Helps the PT to use hospitals, home care, hospice,
and other services, if needed.
• Tailors options to the needs of the PT and their
family
family.

48. Palliative care builds ways to provide
excellent care during illness and at the end
of life. It…
• Helps care providers learn about the
Helps care providers learn about the
best ways to care for ill /dying people.
It gives them the education and
It gives them the education and
support they need.
• Works to make sure there are good
li i d l i l
policies and laws in place.

49. the Hierarchy of Needs (Maslow) and quality of life
the Hierarchy of Needs (Maslow) and quality of life
49
Start

50. Results from good palliative care?
Good palliative care improves:
• The early detection of symptoms and problems
• The early treatment of these symptoms (pro-
active)
• The patient – caregiver relation
• Streamlines (medical) decisions (transmural)
• Organises safe and good (holistic)(home) Care
“We need to move from prognostic paralysis to active total care”
D Meier BMJ 2004 / S Murray BMJ 2005
50
D.Meier, BMJ, 2004 / S Murray, BMJ, 2005
P.Manfredi, J Pain sympt man, 2000
M Rabow, Arch Intern Med, 2004

51. Conclusions: improving quality of life (
or dying)
• Requires a holistic approach and care
concept
• Depends on multidimensional aspects
• Depends on the crossing border from a
Depends on the crossing border from a
curative towards palliative trajectory
• Depends on expectations vs possibilities
Depends on good research programs
51
• Depends on good research programs

52. What you should do for and with your
ti t
patient
• prepare an advanced care plan
• prepare an advanced care plan
• Ask your patient what he/she wants if your
therapy fails or if there is a recurrence
therapy fails or if there is a recurrence
• Discuss end of life decisions and scenarios
• Ask for preferences of the patient
• Ask for preferences of the patient
• Ask what the disease has done with the patient
• Be clear and open with basic information
• Be clear and open, with basic information,
• Foresee problems
Prepare the terminal phase
• Prepare the terminal phase
52