Sign the Declaration of Venice and Support Palliative Care
Research in Developing Countries

Adoption of a Declaration to Develop a Global Palliative Care Research Initiative

The European Association for Palliative Care (EAPC) and the International Association for Palliative Care (IAHPC) worked on a strategy to develop and promote a global palliative care research initiative, with a special focus on developing countries.

In May 2006 during the 4th Research Forum of the EAPC in Venice, the EAPC and IAHPC convened a meeting and joined forces with other regional and academic organizations to initiate this global initiative. The following organizations were represented at the meeting:

• African Palliative Care Association (APCA)
• American Academy of Hospice and Palliative Medicine (AAHPM)
• Asia Pacific Hospice and Palliative Care Network (APHN)
• Department of Palliative Care and Policy (DPCP), King’s College, London - UK
• Eastern and Central Europe Palliative Task Force (ECEPT)
• European Association for Palliative Care (EAPC)
• Help the Hospices (HH) - UK
• International Association for Hospice and Palliative Care (IAHPC)
• International Observatory on End of Life Care (IOEOLC) – Lancaster University, UK
• Latin American Association of Palliative Care (ALCP)
• National Hospice and Palliative Care Organization (NHPCO) – USA
• Neighbourhood Network in Palliative Care (NNPC) – India
• Palliative Care Australia (PCA)
• Sociedad Española de Cuidados Paliativos (SECPAL) - Spain

As a result of deliberations and discussions during the meeting, the group adopted and signed the following Declaration of Venice, to support the global development of palliative care research.

The Declaration of Venice

Palliative Care Research in Developing Countries

The individuals signing below representing several international, regional, and national hospice and palliative care organizations,

Recognizing that more than 1 million people die each week, that only a minority of those in need receive palliative care and that widespread unnecessary suffering results,

Recognizing that the World Health Organization definition of palliative care calls for “impeccable assessment and treatment of physical symptoms and of psychological, social and spiritual problems”,

Recognizing that palliative care includes not only the development of clinical services but also a focus on research and education,

Recognizing that there are limited resources for health care, and research is needed to ensure that the maximum benefit can be provided within what is available,

Acknowledging that palliative care research is an essential tool for the advancement of the best interests of patients and families affected by incurable, advanced disease,

Acknowledging that appropriate and well-conducted evidence based research is vital to identify optimal treatments and services,

Acknowledging that research in palliative care has increased significantly in the last decade, but that the proportion of research conducted in developing countries does not account for the burden of disease these countries face,

Acknowledging that inspite of the increase in palliative care research, there are few resources devoted to the translation of new knowledge and evidence into practice in ways that benefit patients and the families around the world,

Acknowledging that research in resource rich countries may provide only partial benefit for countries with limited resources,

Concerned that articles published in scientific and palliative care journals are often based on studies of patients in developed countries, resulting in treatment protocols which are not necessarily applicable elsewhere,

Concerned that the majority of the journals are published in developed countries and the subscription costs are extremely high in developing countries,

Desiring to develop an agreement to support the development of research in palliative care in developing countries,

Hereby agree to work and collaborate together to:

1. Identify, develop and implement effective strategies to improve palliative care research in developing countries.
2. Identify palliative care research priorities in developing countries according to the needs of specific patient populations, and take into consideration the regional, socio economic and cultural contexts.
3. Identify funders and help mobilize resources to support palliative care research in the developing world.

The representatives recommend the following:

1. The development of palliative care services that include a focus on research and education.
2. A concentration on palliative care research that considers the needs and preferences of individual patients and their families, which takes into account physical, psychological, social and spiritual dimensions of suffering and which makes use of multi-disciplinary approaches.
3. The production by each organization representing a country and/or region of a research agenda for palliative care that contributes to the development of a global research strategy.Those which have done so already should collaborate with regional, national or local groups to further promote such development.
4. A focus within national research agendas on the predominant problems and needs of patients and families and on those areas where sustainable palliative care effects are possible.
5. An acknowledgement within local research strategies of different priorities among the diseases requiring palliative care and an awareness of the differing implications for how palliative care should be developed.
6. The development within resource poor countries of cost effectiveness and economic evaluations to provide a basis for evidence based policy making and clinical practice.
7. The inclusion within the global research agenda of specific technical and ethical problems relating to research methodology and promotion of the value and relevance of both qualitative and quantitative methods, used in combination where appropriate.
8. The generation within countries with limited resources of tools for the evaluation and implementation of evidence based research that will produce relevant and applicable information regarding the effectiveness of palliative care treatment interventions in these settings.
9. The adoption by governments, policy makers and legislators in developing countries of measures needed to implement and support research in palliative care.
10. The commitment by individuals, institutions and organizations with a research mandate in developed countries to assist developing countries identify and establish adequate quality control and standards for research programs, protocols and initiatives.
11. A commitment by universities and academic hospitals that have traditionally trained and supported the vast majority of researchers in the world to establish the academic structures for hosting and promoting palliative care research.
12. A commitment by granting agencies to ensure that a fair proportion of funds given to palliative care services in developing countries is allocated to support research in the field and to ensure its long term sustainability.

The representatives,

Express the hope that adequate resources will be made available to support the implementation of research practices in palliative care in developing countries, including evidence based research.

Invite academic institutions, teaching hospital and universities in developing countries to adopt the necessary practices and changes needed to ensure that palliative care research protocols, positions, resources, personnel, infrastructures, review boards and systems are created and sustained.

Invite professional organizations, national palliative care organizations and other interested parties to join this campaign and thereby help to improve the quality of care given to patients in advanced stages of their disease.

Urge governments in developing countries to provide the necessary support to carry out and implement palliative care research in academic institutions.

Urge organizations, institutions and programs to learn from existing succesful collaborative palliative care research initiatives among developed and developing countries.

Urge successful palliative care research teams to twin with emerging research teams in developing countries to provide scientific and technical support, technology and knowledge transfer, and financial resources when possible.

Done at Venice, Italy on the twenty-sixth day of May, two thousand and six.

In witness whereof the representatives have signed this Declaration.