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Dato Seri Dr T DevarajPenang Hospice Society
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Taking a macroscopic view of care P C is whole person or holistic care
Holistic care best addresses suffering
All who are ill suffer, not only the dying
Good medical care is
foundation of medicine
holistic
responsibility of all in clinical care should begin with diagnosis
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Generally good health, alongside long-term disabilities and diseases will
characterize modern societies apartfrom occasional epidemics
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DEPARTMENT OF STATISTICS, MALAYSIA
Table 1: Past, present and future trends of senior citizens,
Malaysia, 1960-2020
Year Number of Percent of Growth rate of:
senior citizens total populations Elderly Total
(000) population population
1960 386.6 4.8 - -1980 745.2 5.7 3.1 2.3
2000 1,398.5 6.3 3.4 2.6
2020 3,439.6 9.9 4.8 1.9
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UN Conference - September 2011
Focus
CVD, CRD, DM, Cancer 2008 deaths: 57 million / 36 m NCD
Epidemiologic transition & LD
countriesWEF costs NCD $47 trillion by 2030
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Origin when young, decades get established Ageing population
Illness trajectory varies with disease and alsoindividual + / - progressive
- cancer, organ failure, dementia
Adv. Medical knowledge / technology will
* more to live with disease / disability
* postpone death Identifying dying uncertainty in individual
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care expectations public, doctors
costs of care
ethical dilemmas
who will be the carers?
sites of care?
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Are increasing and will continue to do so Kinds of care will be determined-by
morbidity and response to treatment
Acute
Intermittent
long term care
All societies and health care systems will be
challenged health care recognized as a human right
costs of care rising
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Whole person care for all who are sickirrespective of diagnosis or stage of theillness,
Addressing appropriately all his or herproblems
Competent care
Compassionate care
suffering, QOL, fulfill expectations
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compassion
andmodern medicine
suffering terminally ill
die with dignity
place to die peacefully
Dame C Saunders
1918 - 2005
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Approach - holistic (whole person)
involving family
Aims - decrease suffering
provide comfort
not shorten life
not prolong lifesupport family
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WHEN ONE IS ILL
PT
HOSP.
CLINICS
TAKING CARE TO THE HOME
HHP
1992 PT
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PC service provision 1998 as PCU / PCTs PCU (> 6 beds, dedicated staff, ward)
200 beds in 2002
2005 Pall.Medicine medical sub-specialty
2007 Fellowship PM / 2 completed in 2010 Diploma in P Nursing being developed
MOH and Hospice groups
referrals for community care
medications grants
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CANCER Prevalence 90.000 / mod to severe pain 15,000
Annual cancer deaths 12,000
Incidence 2009 40,000 (2/3 at stage 3 / 4)
PC need 26,000 (new per year)
Coverage HHP > 17 % (4489 / 09) PC beds > 10 % (1000)
PENANG (2009)
PC need - 1000 new a year
Coverage 626 (2 HHP)
Think point:
estimated need for Malaysia is
80% of all deaths
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TAKING CARE TO THE HOME NEW
MODELS
PT
HHP
HOSPITAL SUPPORT
TEAM
HEALTH SUPPORT TEAM
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PALLIATIVE CARE
ANAPPROPTIATE MODEL
TO ADDRESS SUFFERING
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Dame Cicely Saunders suffering of terminally ill
WHO (1990)
active total care of patients whose disease notresponsive to curative treatment
WHO (2002)
an approach that improves QOL of patientswithlife threatening illness
what is a L T I ?
WHO (2002) childrenactive total carebegins with diagnosis
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Death
Death
Death
Saunders
suffering
WHO 1990
WHO 2002
Not responsiveto curative Rx
Quality of life inLTI
Dying
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IS HOSPICE CARE
SYNONYMOUS WITH ENDOF LIFE CARE?
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Palliative care is basically just good medical care, and itcan be delivered by any care provider who has theapproach and skills in an environment of support
All specialists, family doctors and nurses should accept
responsibility for the delivery of good care, relying onspecialized palliative care staff and programs only forthe most difficult or unusual problems
Ian Maddocks
Emeritus Professor of P C
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Patient centered care
Care involves all health professionals
Problems addressed appropriately from diagnosis
Will minimize suffering regardless of disease outcome What patients want get well (cure), feel better
(control), care and comfort
MAJOR ILLNESS Death
Control
Cure
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But we tell everyone that the principles of
palliative care are applicable, whatever the
illness, whether simple or complex, early oradvanced, curable or life-threatening, at
home or hospital.
true but very confusing!Derek Doyle 2003
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We are all born to die. At present 50million die yearly. We
ought to give those who are to leave life the same care and
attention that we give to those who enter life, the newborns.
By enabling the vast amount of knowledge available in the
field of palliative care, the quality of life of the terminally illcan be significantly improved
Oxford Textbook of P Medicine 1992
Think Point:
message is babies matter, dying matter but what about
those in between who are ill ?
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In many ways I think this is the most exciting way forward,helping to move support and symptom control to an earlierstage of the disease. It emphasizes that hospice treatment isnot merely a last resort but can be practiced in the general and
teaching hospitalIt is only when such care is spread through the National HealthService in general, in both hospitals and the community, as wellas in hospices, that these people will have the help they need
Dame Cicely Saunders
Parthenon Publishing Group 1988 & Free Inquiry
1991/92 Vol 12 No.1
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Get well (cure)
Feel better (control)
Care and Comfort
?
must I be dying to get good care
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WHAT WOULD YOU
WANT
WHEN ILL ?
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Study of PC intervention in 151 newly diagnosed non-small-cell lung cancer by Temel et al. Results: as cf standard care group, the intervention
group had better quality of life, lower rates ofdepression and a 2.7 month survival benefit
Editorial: The study by Temel et al. represents animportant step in confirming the beneficial outcomes ofa simultaneous care model that provides both palliativecare and disease-specific therapies at the time ofdiagnosis.
Think Point:why not advocate good medical care by clinicians
from diagnosis?
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HOLISTIC CARE IS GOOD APPROACH
FOCUS ON END OF LIFE CARE
up to 80 % of all who die
DOES NOT ADDRESS ALL SUFFERING
hence not appropriate
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No moral impulse seems more deeply embedded than the
need to relieve sufferingit has become the foundationstone for the practice of medicine, and it is at the core of thesocial and welfare programs of all civilized nations
Callahan D. The Troubled Dream of Life: In Search of a Peaceful Death.1993
A Physician is obligated to consider more than the diseasedorgan, more even than the whole man he must view theman in his world.
Harvey Cushing (1869 -1939)
* A doctor must be a compassionate and caring person first,and if he/ she knows something of medicine it will be his /her additional qualification
Anonymous
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Public
Government
Health
Professionals
SupportGroup
Friends
Family
Patient/Individual
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Promotion of health
Prevention
disease
premature death Cure or control disease
Care and comfort
all who are ill
chronic ill
incurable
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universal coverage
equal access
efficient use of resources
equity in financing
consumer choice
control of expenditure
clinical freedom for providers
Long healthy life, short ending
meeting needs and curbing costs
?????????????
HOW DO YOU DO IT
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No country can call itself civilized if an ill
person is denied care because of lack of
means
Aneurin Bevan
1947
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Palliative care = holistic care
Good medical care is also holistic care
Why continue perception that they are different?
Commonality is holistic care
Best if all clinical care is holistic care
Thus all clinicians have a duty of holistic care
Holistic care from diagnosis by primary doctor
P C specialist accessed for problems
Way forward - advocacy by P C practitioners
our constituency all with a major illness
* This approach will be welcomed by public
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Enormous as it should be for all ill
Current P C approach does not address all who suffer
Even if environment of support improves the need will
not be addressed Mainstream medicine must be involved
GMC is the duty of all clinicians
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NEEDS
SUPPORTIVE
ENVIRONMENT
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Patient centered Health system
- levels of care, primary care led, seamless care
Resources adequate trained staff, $
Professional carers
- caring attitude
- competent
- compassionateThink point:
Can we attain developed status in health care if mind
sets do not change?
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Philosophy of care - primary care led andcommunity based
Continuity of care between practice settings
and levels of care Applies to many chronic conditions and
chronic illnesses
Main thrust of care home / community care
In patient care as back up
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Specialist
Doctor
GP/ResidentialPrimary
Secondary Care
Tertiary Care
Self, family, friendHome
Think Point: elements of above already ongoing but not in anenvironment of support
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Public maintain healthy lifestyle, manage minor illness,
have a family doctor, access hospitals only for A &
E or via family doctor, and not abuse system
Providers (health professionals & hospitals) be ethical & professional, not abuse system
Government
critical role
ensure equitable access, resources provide services
regulate health care
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reestablish
whole person care
as good medical practice
involving all clinicians
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you can start
tomorrow
Dr Mary BainesNational Palliative Care Conference,
November 1993
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LIFE IS UNCERTAIN
DEATH IS CERTAIN
If as physicians we believe that advances in medical
technology can indefinitely postpone death then it is a
delusion - D Callahan (1993)
Patients / families
keep pushing doctors to go on trying till the end
are ready to let go disturbed or fear being kept alive with unacceptable
technology
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Healthy
Financially secure
???Short final morbidity
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Free from avoidable distress, suffering
In accord with ones wishes, culture
Consistent with clinical and ethical standards
Company of loved ones
Opportunity for farewells and fulfillment
Achieve meaning of life