Sunday, November 29, 2009

Palliative Care: The Public Health Strategy

VIEWPOINT
Palliative Care: The Public Health Strategy
JAN STJERNSWA¨ RD*
ABSTRACT
There is the knowledge to improve the Quality of Life, Dying and Death of cancer
sufferers, other patients dying of chronic diseases, HIV/AIDS and the children and
elderly terminally ill and their caring family members, an estimated 100 million
people globally, if palliative care and pain relief would be available. Tragically
however, palliative care is only reaching a lucky few. Two third of those in need of
palliative care are in the low or middle income countries.
The World Health Organization (WHO) has pioneered a public health strategy to
integrate palliative care into existing healthcare systems as this offers the best
approach for translating new knowledge and skills into evidence-based, costeffective
interventions that can reach everyone in the population, when incorporated
by governments into all levels of their healthcare systems and owned by the
community. The WHO Strategy starts by establishing four foundation measures, key
components that are: 1) appropriate policies, 2) adequate drug availability,
3) education of the public, policymakers and the public and 4) implementation.
The WHO Model has shown that it provides an effective strategy for countries to
establish palliative care. The Open Society Institute has actively supported countries
to establish National Palliative Care Programs according to these principles.
Combined with a community strategy that involves the society through collective
and social action‘‘Palliative Care for All’’ indeed could become a reality.
Journal of Public Health Policy (2007) 28, 42–55.
doi:10.1057/palgrave.jphp.3200115
Keywords: palliative care, Public Health, World Health Organization
WHY A WHO PUB L I C HEALTH STRATEGY WA S LAUNCHED
The problem addressed must be of significance for large populations
and there must be available scientifically valid interventions that
are acceptable and maintainable at the community level. As everyone
on this earth must die, for many this means suffering, including
physical, existential, and spiritual pain. With chronic diseases,
*Address for Correspondence: Chief Cancer WHO (Emeritus), Svedala, Sweden. E-mail:
janstjernsward@hotmail.com
Journal of Public Health Policy 2007, 28, 42–55 r 2007 Palgrave Macmillan Ltd 0197-5897/07 $30.00
www.palgrave-journals.com/jphp
millions have slow painful deaths. Palliative care relieves suffering
and improves quality of life for both patients and for their families
throughout an illness experience, not just at the end-of-life. Today,
we possess the knowledge to relieve much of the unnecessary
suffering (1).
Unfortunately, while we have the knowledge and experience to
control pain and diminish suffering significantly, the tragedy for
most of the world’s population is that palliative care is not available.
In fact, the greatest need is in countries where healthcare resources
are the scarcest – where two-thirds of those needing palliative care
reside. Addressing these needs requires a rational public health
approach. Hospice care and isolated institutionalized medical
approaches have failed to reach the majority of those in need of
palliative care, covering only a lucky few (1).
A public health approach offers the best opportunity to use our
knowledge and skills in cost-effective interventions that can reach
everyone. For public health strategies to be effective, they must be
incorporated by governments at all levels of healthcare systems. To
be effective, the strategy must be owned by the community, involving
the society through collective and social action.
Under the auspices of the World Health Organization (WHO) key
policy makers and implementers from 192 countries meet and
communicate regularly. Policies and plans are developed, laws and
regulations enforced, and community partnerships mobilized. In
1980, using this platform, the new chief of cancer at WHO
reoriented cancer control and developed a public health strategy
for palliative care – a program to extend our great accumulated
knowledge to all (2). Cancer pain was a target symptom and cancer,
the disease, in the initial program. The same policies and strategies
were also valid and could benefit the terminally ill elderly and those
suffering from other chronic diseases, including HIV/AIDS (1).
Size of the Problem
Globally there are 58 million deaths from all causes, 45 million in
developing countries and 13 million in developed countries. An
estimated 60%, 35 million, will have their advanced illnesses for
quite a long time before they die, and would benefit from palliative
care. The largest group will be the elderly dying. Of cancer victims,
STJERNSWA¨ RD . VIEWPOINT 43
an estimated 60% will have significant pain and worldwide twothirds
will not be cured. If at least two family members are involved
in each patient’s care, effective palliative care will improve the
quality of life for more than 100 million people annually (1).
The need for palliative care will increase rapidly over coming
years. By 2025 there will be 1.2 billion people 60 years of age or
older, a doubling from today’s 600 million and by 2050 the number
will increase to 2 billion. Incidence of cancer will more than double
to an estimated 24 million new cancers per year by 2050. And if
preventative measures do not work, annual mortality from AIDS will
increase to 4 million in 2015 and 6 million by 2030. Simple, effective
methods and approaches to palliative care exist and can be applied,
including at the community level. These hold out the possibility of
covering all (3–5).
WHO PUB L I C HEALTH STRATEGY FOR PAL L I AT I VE CARE
WHO pioneered a public health strategy to integrate palliative
care into existing healthcare systems. It developed the WHO
Pain Ladder (3) and policy recommendations (4,5). In 1990,
WHO recommended to all its member states that ‘‘Pain relief
and palliative care programmes are incorporated into their
existing healthcare systems: separate systems of care are neither
necessary or desirable’’ and ‘‘to ensure that equitable support
is provided for programmes of palliative care in the home’’. It
continues, ‘‘In the light of the financial, emotional, physical
and social burden carried by family members who are willing to
care for patients in the home, governments should consider
establishing formal systems of recompense for the principal family
care givers’’ and ‘‘should ensure the availability of y particularly
morphine’’.
WHO 1990 recommendations to governments are listed in
Table 1. There were further guidelines on priorities and advice on
how to implement national palliative care programs and national
cancer control programs. In the latter, palliative care was one of the
four main priorities of any comprehensive cancer control program.
The recommendations report a first international consensus on
methods to control pain that would be affordable and acceptable at
community level. A few countries, for example the Nordic countries
JOURNAL 44 OF PUBLIC HEALTH POLICY . VOL. 28, NO. 1
TABLE 1: WHO recommendations to member states (4)
Implementations of the following recommendations, which could have a
major impact on the quality of life of cancer patients, will require strong
political motivation and leadership but can be undertaken without high
expenditure
1. Governments should establish national policies and programmes for
cancer pain relief and palliative care.
2. Governments should ensure that cancer pain relief and palliative care
programmes are incorporated into their existing healthcare systems:
separate systems of care are neither necessary nor desirable.
3. Governments should ensure that healthcare workers (physicians, nurses,
pharmacists, or other categories appropriate to local needs) are
adequately trained in palliative care and the relief of cancer pain.
4. Governments should review their national health policies to ensure that
equitable support is provided for programmes of palliative care in the homes.
5. In the light of the financial, emotional, physical and social burden
carried by families who are willing to care cancer patients in the home,
governments should consider establishing formal systems of recompense
for the principal family caregivers.
6. Governments should recognize the singular importance of home care for
patients with advanced cancer and should ensure that hospitals are able
to offer appropriate back up and support for home care.
7. Governments should ensure that availability of both opiod and non-opiod
analgesics, particularly morphine for oral administration. Further, they
should make realistic determinations of their opiod requirements and
ensure that annual estimates submitted to the INCB reflect actual needs.
8. Governments should ensure that their drug legislation makes full
provision for the following:
K regular review, with the aim of permitting importation, manufacture,
prescribing, stocking, dispensing and administration of opiods for
medical reasons;
K legally empowering physicians, nurses, pharmacists and, where
necessary, other categories of healthcare workers, to prescribe stock
and administer opiods.
K review of the controls governing opiod use, with a view to
simplification, so that drugs are available in the necessary quantities
for legitimate use.
9. With pressure for the legalization of euthanasia likely to increase,
governments should make strenuous efforts to keep fully informed of all
developments in the field of cancer pain relief, palliative care and
management of terminal cancer.
STJERNSWA¨ RD . VIEWPOINT 45
Catalonia in Spain and Uganda, have successfully implemented the
WHO recommendations. But surely, each country has to find
solutions for the care of its terminally ill according to its cultural and
socio-economic circumstances.
There are four key components that must be established for a
WHO public health approach in palliative care:
 appropriate policies,
 adequate drug availability,
 education of healthcare workers and the public and
 implementation of palliative care services at all levels throughout
the society and empowerment of the community (4,5).
The four components must be addressed in a coordinated
way to be effective. The first three cost little but will have a large
effect.
Policies
National policies are important for facilitating the implementation
of palliative care programs, assuring care for all people in need
of these services. Countries usually start with advocacy to
increase awareness and change attitudes about the importance of
palliative care, knowledge about the size of the problem, and
the existence of affordable solutions. Holding International
Workshops with carefully selected participants from countries
offers an effective targeted advocacy (6–11). Table 2 gives
some example on what has been done. National Workshops
offer an opportunity to establish an Action Plan for a National
Palliative Care Program and related policy changes that will be
needed.
Policy changes usually address the need for integrating
palliative care into the National Health Plan or into a National
Cancer Control Plan. They may for example establish a principle
that the major part of needed opiates should be made up of generic,
cost-effective immediate-release and slow-release morphine, and that
key palliative care drugs be included in the National Essential
Medicine List.
JOURNAL 46 OF PUBLIC HEALTH POLICY . VOL. 28, NO. 1
TABLE 2: Key persons from following countries sensitized to a public health
approach in cancer control and palliative care at 3 days interactive workshops
Banff
1993
Florianopolis
1995
Sydney
1996
Poznan
1998
Budapest
3
Botswana
2002
International
Regional International
Regional Regional Regional
Australia Latin
America
Central,
East
Europe
Central,
East Europe,
Central Asia
Africa
Bangladesh Australia
Bolivia Bulgaria
Canada Canada
Chile Chile
Colombia China
Costa Rica Colombia
Cuba Cuba
Czech Denmark
Denmark Fiji
Egypt Finland
Finland France
Hungary Ghana
India Indonesia
Kuwait India
Malaysia Italy
Malawi Kuwait
Mauritius Lithuania
Mexico Malaysia
Mongolia Malawi
New Zealand Nepal
Nepal New Zealand
Nigeria Portugal
Oman Philippines
Singapore Senegal
Slovenia South Africa
South Africa Venezuela
Sri Lanka Vietnam
Sweden
Thailand
Uruguay
UK
Zimbabwe
STJERNSWA¨ RD . VIEWPOINT 47
Drug Availability
Availability of opioids and other essential medicines should be
ensured, estimates of new needs developed, the International
Narcotics Control Board quota increased, generic opioids ordered
(and their introduction into the country coordinated with bedside
training), prescription rules for opioids improved, and availability
and easy access to needed drugs established.
Education
Advocacy to the public, health professionals, and policy makers with
facts and figures, inclusion of palliative care in undergraduate and
continuing education of doctors, nurses, social workers, clinical
pharmacists. Outreach to oncologists, volunteer organizations, and
relevant NGOs.
Implementation
Identify champions and create a critical mass of new full time clinical
palliative care positions and infrastructure for an initial reference
center of excellence and state of the art leadership. Expand services
into the country’s healthcare system at all levels, including home
care. Organize societal efforts through collective and social actions
and empowerment of care providing family members and communities.
Weak human resources, lack of institutional infrastructure,
and lack of financing constitute the major impediments to making
use of existing knowledge and closing the ‘‘Know-Do-Gap’’. They
must be addressed now (12).
OUTCOME S
We have not only talked the talk (advocacy, establishing policies,
strategies and consensuses for key approaches and methods) but
recently walked the walk (helping countries establishing national
palliative care programs/initiatives according to public health
principles).
Tables 3 and 4 offer an overview of outcomes from the first
countries to establish palliative care according to the strategies
described above (13–19).
JOURNAL 48 OF PUBLIC HEALTH POLICY . VOL. 28, NO. 1
TABLE 3: Outcomes NPCP
Outcomes Catalonia Kerala Uganda Lebanon Jordan Mongolia Georgia
Immediate:
Awareness/
coordination
+ + + + + + +
Champion/
focal person
+ + +  + + +
Action plan +  + +NGO + + +
MoH
Time line +  +  + + +
Indicators + + + + + + +
Intermediate:
Legislative changes + + + + + + on going
PC into NHCS + +/ +   + on going
Education/
training
+ + + + + + +
Drug
availability
+ + +  + + +
Increased
awareness
+ + +    +
NPCP Initiated + + +   + +
PC in main CC + + + + + + +
Starting PC in
other CCs
+ +  2/3 + on going
Covering
geriatric pat.
+ +
Long term:
Coverage > 80% + +in NNPC     
Improved QL
patients/family
+ +in NNPC 
Details:
Altered
prescription
rules
+ + + + + + on going
Generic morphine
available
+ + +  + + +
Cost of IR
morphine
10mg tablets
18 cts 1–2 cts 14 cts 5 cts 
STJERNSWA¨ RD . VIEWPOINT 49
Outcomes can be divided into immediate, intermediate and long
term. The Catalonia WHO Demonstration project has been
evaluated for the longest time. It has been providing palliative care
since 1990 for the newly diagnosed as well as the terminally ill who
are dying of cancer, old age, chronic diseases, and AIDS. A
combination of NGO and community-based approaches with
official policies and governmental support, it meets 80% of the need.
PAL L I ATI V E CARE FOR AL L : BY THE P EOPL E , THROUGH THE
P E O P L E AND FOR THE PE O P L E
The people themselves – society and the community – must take
ownership of palliative care. To reach all in need of palliative care, a
community approach is absolutely essential; the only realistic model
TABLE 3 (continued)
Outcomes Catalonia Kerala Uganda Lebanon Jordan Mongolia Georgia
Cost of SR
morphine
30mg tablets 43cts 15cts 18 cts 10 cts
10mg 66 cts
Cost of oral
liquid morphine/
10mg
8 cts Free o1 ct
Morphine
consumption
increased
+ + +  + too soon too soon
+=done, achieved, successful
=not done, unsuccessful
+/=incomplete success (for Kerala=PC in the NNPC Community and some districts/not in the
NHCS
too soon=not enough time gone for allowing evaluation (Georgia started 11 months ago, and
Mongolia 4 years ago but IRMS and SRMS first available 6 months ago
NGO=The Lebanese Cancer Society/MoH=Ministry of Health
cts=cents US
Free=cost of 3 weeks supply liquid morphine corresponds to the cost of one loaf of bread. The
Government provides the morphine free of charge. Qualified Palliative care nurses may renew
prescription and change dose.
Generic Morphine tablets comes from HIKMA Pharmaceuticals, Amman, Jordan and West
Coast Pharmaceuticals, Ahmedabad, India or Nycomed, Denmark and Morphine Solutions are
produced in Kampala, Uganda from Morphine imported from Scotland
Total opioid consumption increased from 3.5 kg/million/people in 1990 to 21 kg/million in
2005 in Catalonia
JOURNAL 50 OF PUBLIC HEALTH POLICY . VOL. 28, NO. 1
TABLE 4: Some outcomes of National Workshops on establishing NCCP or NPCP
Outcomes Zimbabwe Malaysia Indonesia South Africa Kuwait Vietnam
Immediate:
Awareness + + + + + +
Champions + + ? + + +
Plans + +
Intermediate:
Sensitized + + ? + + +
Legislative + + ? + + ongoing
Education + + ? + + ongoing
Drugs + + ? + + ongoing
Starting PC in
other CC
+ + 1 + + +
Other PC Units
in HCS
+    
NPCP initiated +   + +
Details:
NPCP initiated
but aborted
Palliative Care
Units in all
Provinces
No clear
champion has
taken leadership
Death of
champion and
created full
time MoH
position abolished
PC in
the NCC
PC being
institutionalized
in the 3 major
CC
NCCP
Opiods included
in essential
Medicine list
Law Allowing
opiods
improved
NCCP subcommittee
on
palliative care
existed for a time
>200 bed
Center for
terminal care
MoH Established
Need Assessments
and PC Standards
STJERNSWA¨ RD . VIEWPOINT 51
for reaching those who might benefit – two-thirds of the world’s
terminally ill. Meaningful palliative care requires a combination of
socio-economic, cultural, and medical solutions. All three must be
addressed. Not purely a medical issue, the cultural and socioeconomic
factors determine what kind of death we face. Today’s
overemphasis on medical approaches can be balanced only by the
people taking ownership (20).
In India, the community palliative care projects of districts in
northern Kerala, a WHO Demonstration Project, and its Neighborhood
Network in Palliative Care (NNPC) initiative (21–23) illustrate
a solution to a key worldwide problem – the coverage and care for
the terminally ill. Most of India’s terminally ill live in 500 or more
districts. They should receive their palliative care in those districts,
not in large specialized centers.
The Kerala Community approach is concordant with WHO’s
Public Health and Primary Health recommendations. Kerala has
made palliative care a peoples movement that took responsibility
and ownership for care of the terminally ill, established high
ethical standards, reached most of the terminally ill. Kerala
demonstrated an alternative to over-medicalized, over-specialized,
institutionalized, and, in the long run, unaffordable care of the
dying. Kerala’s program has proved to be financially self-sustaining
and confirmed that social support, psychological support,
nursing care, and some medical management can be done by the
community.
India, with more than one-sixth of the world’s population, has
fewer than 100 palliative care specialists. Their main role
must inevitably be to train future trainers and then to educate
health professionals (see the middle part of the triangle in Figure 1)
in core competencies of palliative care. The health professional,
in turn, can support the large base, the community. The importance
of the community approach is shown by the base part of the
triangle (20).
The WHO Pain Ladder (3) and the Northern Kerala Districts
Community Programs (21–23) have responded to the WHO
Declaration of Alma Ata – ‘‘Health for All’’ through primary health care:
Primary health care is essential health care based on appropriate
and acceptable methods and technology made universally
JOURNAL 52 OF PUBLIC HEALTH POLICY . VOL. 28, NO. 1
available to individuals and families in the community through
their full participation and at a cost that the community and
country can afford to maintain in the spirit of self-reliance
The district community approach in palliative care, 28 years after
Alma Ata, shows the way forward for palliative care to ‘‘Palliative
Care for All’’. The Kerala District community and NPPC projects for
terminal care was initiated and is now run and owned by the people.
If similar strategies can be employed elsewhere, that would be a very
important step forward for global palliative care.
S UMMARY
Around 35 million people worldwide are experiencing pain and
suffering when dying without access to palliative care. Strategies and
priorities for how to curb much of this unnecessary suffering have
been established. The WHO Public Health Model for palliative care
Community approach
Health professionals
Palliative care specialists
"Palliative care for all"
FIGURE 1
Achieving Palliative Care for All (20).
STJERNSWA¨ RD . VIEWPOINT 53
has demonstrated that it provides an effective strategy for integrating
palliative care into a country and the Kerala Community approach
that ‘‘Palliative Care for All’’ could become a reality.
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STJERNSWA¨ RD . VIEWPOINT 55

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