Vol. 33 No. 5 May 2007 Journal of Pain and Symptom Management 509

Special Article

Funding for Palliative Care Programsin Developing CountriesMary Callaway, MME, Kathleen M. Foley, MD, Liliana De Lima, MHA,Stephen R. Connor, PhD, Olivia Dix, MA, Thomas Lynch, MA,Michael Wright, PhD, and David Clark, PhDInternational Palliative Care Initiative (M.C., K.M.F.), Open Society Institute, New York,

New York, USA; International Association of Hospice and Palliative Care (L.D.L.), Houston,

Texas, USA; Research and International Development (S.R.C.), National Hospice and Palliative Care

Organization, Alexandria, Virginia, USA; Palliative Care Initiative (O.D.), Diana, Princess of Wales

Memorial Fund, London, United Kingdom; and the International Observatory on End of Life Care

(T.L., M.W., D.C.), Institute for Health Research, Lancaster University, Lancaster, United Kingdom

AbstractThere are many palliative care developments in resource-poor regions of the world. Most ofthem are supported by third-party donors and grant makers. The funding necessary to coveressential palliative care services usually exceeds the financial means of many developingcountries. Health care services may have to be complemented by nongovernmentalorganizations that are dependent on fund raising and voluntary donations from a variety ofexternal sources. Coordinated action by international funding agencies is needed to ensurethat the world’s poorest people have access to essential medications and appropriate palliativecare. To this end, international networking in the palliative care field is vital. There are nowa number of collaborative networks that make a significant contribution to the developmentand sustainability of hospice and palliative care across many resource-poor regions of theworld. J Pain Symptom Manage 2007;33:509e513. � 2007 U.S. Cancer Pain ReliefCommittee. Published by Elsevier Inc. All rights reserved.

Key WordsFunding, hospice, palliative care, developing countries, collaborative networks

IntroductionThe World Health Organization (WHO) has

highlighted the importance of palliative carein the developing world,1,2 yet many countriesprovide limited or no palliative care services.3

Address reprint requests to: Mary Callaway, MME, Inter-national Palliative Care Initiative, Open Society In-stitute, 400 West 59th Street, New York, NY 10019,USA. E-mail: mcallaway@sorosny.org

Accepted for publication: February 1, 2007.

� 2007 U.S. Cancer Pain Relief CommitteePublished by Elsevier Inc. All rights reserved.

With only a few exceptions, palliative care isnot incorporated within health care systems.As a result, there is no allocation of publicfunds or institutional resources,4 and no reim-bursement for services rendered throughhealth insurance programs.

The levels of funding necessary to cover es-sential palliative care services are usually farbeyond the financial means of developingcountries. Governments may not have the eco-nomic ability or political will to implement pal-liative care policies, and services may haveto be complemented by those provided by

0885-3924/07/$esee front matterdoi:10.1016/j.jpainsymman.2007.02.003

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nongovernmental organizations (NGOs) thatare often dependent on fund raising and vol-untary donations from a variety of externalsources.

Coordinated action by international fund-ing agencies is needed to ensure that theworld’s poorest people have access to essentialmedications and appropriate palliative care.5

The Council of Europe recommendation(2003)6 suggested that international network-ing should be promoted in the palliative carefield, with collaboration between funders,NGOs, providers, and in-country governmen-tal agencies.7 There are several internationalcollaborative networks that make a significantcontribution to the development and sustain-ability of hospice and palliative care acrossmany resource-poor regions worldwide.

Open Society InstituteThe Open Society Institute’s (OSI’s) Inter-

national Palliative Care Initiative (IPCI) beganin 1999 as a joint initiative of the Project onDeath in America and the Network PublicHealth Program. The initiative supports workin Central Eurasia, Southeast Asia, the MiddleEast, Central and Eastern Europe, Southeast-ern Europe, Ukraine, Russia, South Africa,and Southern and West Africa. IPCI’s objectiveis to serve as a catalyst to enhance the integra-tion of palliative care into health care policy.Its primary goals include public and profes-sional education, health care policy andstandards development, access to essential pal-liative care medications, and advocacy. IPCIsupports individual grants for palliative carefaculty development in cancer, AIDS, geriat-rics, and pediatrics in universities, medicalacademies, and public and private hospitals.International pain policy fellowships focus onthe legal frameworks governing the availabilityand affordability of opioid analgesics for painmanagement.

To date, IPCI has supported palliative carecenters of excellence in Hungary, Mongolia,Poland, Romania, Russia, Serbia, South Africa,and Uganda and palliative care needs assess-ments in Azerbaijan, Macedonia, Moldova, Ta-jikistan, and Ukraine. Needs assessments areplanned for Albania, Kazakhstan, and Tanza-nia. In order to monitor palliative care devel-opment and opioid availability worldwide,

IPCI has supported the International Observa-tory on End of Life Care (IOELC) and theWHO Collaborating Center for Pain and Pol-icy Studies. IPCI consultants have worked oneducation and policy in Georgia, Jordan,and Mongolia, and IPCI staff have providedtechnical assistance and support to severalcountries receiving Global Fund and thePresident’s Emergency Plan for AIDS relief(PEPFAR) support.

IPCI convenes palliative care leaders, policymakers, and donors to collaborate on and coor-dinate palliative care advocacy initiatives. IPCIhosts an annual Salzburg Seminar for PalliativeCare for health care physicians and nurses, aswell as an annual OSI seminar. IPCI supportsindividuals, national and regional associations,and international organizations with grantsranging in size from $1,000 to $150,000 annu-ally. IPCI has collaborated with the WHO andis collaborating with the International AtomicEnergy Agency on the Programme of Actionfor Cancer Therapy (PACT) program to ad-vance cancer prevention, treatment, and pallia-tive care through the ‘‘Atoms for Peace’’program. Additional collaborations with theU.S. National Cancer Institute support the inte-gration of palliative care in cancer care for pa-tients in the Middle East, Georgia, and Africa.IPCI collaborates with multiple national, re-gional, and international donors such as theDiana, Princess of Wales Fund, Eleanor Foun-dation, Elton John AIDS Foundation, Helpthe Hospices, International Association of Hos-pice and Palliative Care, National Hospice andPalliative Care Organization, and the World-wide Palliative Care Alliance.

International Association for Hospiceand Palliative Care

The International Association for Hospiceand Palliative Care (IAHPC) is a global organi-zation dedicated to the promotion and dissem-ination of palliative and hospice care aroundthe world. The mission of IAHPC is to increasethe availability and access to high-quality hos-pice and palliative care for patients and fami-lies; it does this by promoting communication,facilitating and providing education, and bybecoming an information resource for patients,professionals, health care providers, and policymakers.

Vol. 33 No. 5 May 2007 511Funding Palliative Care in Developing Countries

The organization has developed several pro-grams with the aim to support individuals andorganizations. These are

� Traveling Fellowship Program: This programcovers the cost of travel of an individualwho has been invited to teach in a develop-ing country for at least two weeks. From1999 to date, 42 individuals have traveledto programs in 25 different countries.� Traveling Scholarship Program: This program

provides financial support to individualsfrom developing countries to cover thecost of travel to an international meeting.They are selected for their outstandingleadership capabilities and past accom-plishments in palliative and hospice care.Since the start of the program, IAHPChas supported 53 palliative care leadersfrom developing countries.� Faculty Development Program: The main ob-

jective of this program is to institutionalizepalliative care in teaching hospitals anduniversities. The program promotes for-mal education in health care institutionsby funding faculty palliative care positionsfor nurses or physicians in developingcountries. An agreement is signed be-tween IAHPC and a teaching institutionso that when the grant period ends, theprogram is fully entrenched in the system.� Clearing House Program: IAHPC has sent

more than 4,000 kg of donated journalsand books to more than 500 individuals,hospices, institutions, and libraries indeveloping countries.

The amount of funding that IAHPC pro-vides to support the programs ranges between$150,000 and $200,000 per year. IAHPC raisesfunds for its programs from different sources.It does not have an endowment or one signifi-cant source of funding. By keeping administra-tive costs to a minimum, IAHPC is able toallocate the largest possible amounts to theinitiatives it supports.

The National Hospice and PalliativeCare Organization

The National Hospice and Palliative CareOrganization (NHPCO) (U.S.) is the primaryassociation for hospice and palliative care

programs and professionals in the UnitedStates. A relative newcomer to the effort todevelop palliative care internationally, theNHPCO has made contributions to advancingpalliative care in sub-Saharan Africa, EasternEurope, Asia, and Latin America. Althoughnot a funding organization per se, NHPCOhas been able to direct some financial andtechnical resources for palliative care in devel-oping areas of the world.

In 2001, the NHPCO agreed to serve asa U.S. partner to the emerging hospice com-munity in Romania. Since then, nationalstandards have been written and published,contracts have been established for partialservice reimbursement, palliative care hasbecome a recognized subspecialty, restrictionson the use of opioids have begun to be lifted,and recently a coalition was formed to pro-mote a national plan for palliative care. Othersimilar efforts are under way to assist inadvancing palliative care in most EasternEuropean countries, notably Moldova andthe Ukraine.

In sub-Saharan Africa, NHPCO formed a part-nership with the African Palliative Care Associa-tion (APCA). Subsequently, the NHPCO andthe (U.S.-based) Foundation for Hospice insub-Saharan Africa (FHSSA) merged. Througha grant from the Diana Fund to NHPCO,FHSSA has been providing resources to expandAPCA’s ability to implement palliative care forpeople living with HIV/AIDS in Africa. Workcontinues on advocacy for increased accessibil-ity to opioids and essential palliative care medi-cations, training for professionals in palliativecare, standards development, development ofmonitoring and evaluation tools, provision oftechnical assistance, infrastructure support,and efforts to graft home-based palliative careinto existing, primarily faith-based health careorganizations.

In addition to focusing on developing na-tional associations, the NHPCO has concen-trated its efforts on the development ofstandards and systems for measuring the qual-ity and quantity of palliative care. The growingLatin American Palliative Care Association isreceiving ‘‘in-kind’’ support from the NHPCOto develop its systems for measuring the quan-tity and quality of palliative care in Latin Amer-ica. An APCA African Palliative Outcome Scalehas been developed and tested. Support for

512 Vol. 33 No. 5 May 2007Callaway et al.

the development of outcome measures inIndia is also being supported in cooperationwith the IAHPC.

The NHPCO is contributing to the develop-ment of the Worldwide Palliative Care Alliancethrough the provision of support and techni-cal assistance. An international Standards andQuality work group supported by the NHPCOhas been formed to help coordinate measure-ment activities, including joint support withHelp the Hospices for the IOELC project‘‘Mapping Levels of Palliative Care Develop-ment: A Global View.’’8

The Diana, Princess of Wales MemorialFund, Palliative Care Initiative

The Palliative Care Initiative (PCI) of the Di-ana, Princess of Wales Memorial Fund waslaunched in 2000. To date, over £2 millionhas been spent and a further £10 million com-mitted over the next five years, by which timethe Fund intends to have spent out its re-sources. However, the Fund aims to ensurethat its activities are sustained beyond the lifeof the Fund itself.

The PCI works nationally, regionally, andinternationally, using the unique name andassociations of the Diana, Princess of WalesMemorial Fund, as well as its resources, to pro-mote palliative care at all levels. The Diana,Princess of Wales Memorial Fund has sup-ported palliative care initiatives in the follow-ing nine countries: Ethiopia, Kenya, Malawi,Rwanda, South Africa, Tanzania, Uganda,Zambia, and Zimbabwe.

The PCI is proactive, strategic, and objectivedriven, with a desired outcome that palliativecare be accepted as part of, and integratedinto, the care and treatment of people withHIV/AIDS, cancer, and other life-limitingillnesses. Building on its work to date, thePCI has identified six objectives:

� Local and national governments, theHIV/AIDS community, and the develop-ment community incorporate palliativecare into the continuum of care for every-one with a life-limiting illness� A strong palliative care sector capable of

scaling up delivery and influencing healthpolicy

� A workforce, from medical professionalsto informal carers, that is trained to en-sure the delivery of high-quality palliativecare� An increase in long-term donor funding

for palliative care that makes it a sustain-able intervention� A strong, effective, and sustainable regional

organization that effectively promotes andsupports palliative care in Africa� An increased evidence base to demon-

strate the effectiveness and impact of palli-ative care in Africa

The objectives are intentionally ambitious.Obviously, the PCI, as a program of a relativelysmall independent donor, cannot achievethem alone. The PCI will continue to work inpartnership with African organizations work-ing on the ground and other national andinternational partners, including donors. Cen-tral to the work of the PCI is a strong evalua-tion and learning strategy and a fullyintegrated communications strategy to dissem-inate information and lessons learned andraise the profile of palliative care.

ConclusionThere are many palliative care develop-

ments taking place in resource-poor regionsof the world, most of them supported bythird-party donors and grant makers. Interna-tional partners and funding bodies may in-crease strategic development by emphasizingthe need for cooperation. Partnerships be-tween donors, governments, NGOs, and localorganizations are essential in developing effec-tive and sustainable prevention and care pro-grams,9 particularly in the resource-poorcountries of the world.

Financial problems are common to most ofthe palliative care programs within developingcountries. National and international founda-tions and agencies that provide funding forhospice and palliative care activities in the de-veloping world need to identify those coun-tries with the potential capacity and politicalwill to initiate palliative care services. Palliativecare programs and initiatives in developingcountries need to identify sources and activi-ties capable of generating funding streams tosupport the operational costs of the program.

Vol. 33 No. 5 May 2007 513Funding Palliative Care in Developing Countries

Many other alternatives exist and programs ineach country need to evaluate the resources inthe community in order to develop and imple-ment resource-generating strategies that havethe greatest potential to be successful andcost effective.

Long-term financial survival is the key tosolving critical economic and human resourceissues that interfere with the smooth develop-ment of palliative care activity. Financial auton-omy requires dedication and labor, butguarantees sustainability. Several collaborativenetworks continue to strive to develop a trulyinternational approach to the promotion ofpalliative care, which is currently denied tothe majority of the world’s most needypeople.10

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