Building on a single vision (Asia-Pacific)
The development of a regional umbrella organisation serving East Asia and the Eastern Pacific Rim had its origins in the vision of Dr. Shigeaki Hinohara, a Japanese cardiologist, who had built a hospice near Tokyo called Peace House. With support from Japanese foundations, he invited a number of palliative care experts in the region to come to Tokyo in 1995 to discuss hospice and palliative care development. There was little follow-up to this promising start until Dr. Hinohara came to Singapore to meet with Dr. Cynthia Goh, head of the palliative care department at the Singapore Cancer Center, who had already successfully organised an umbrella organisation for hospices in the Republic of Singapore.
A second regional planning meeting was held in Japan in 1997, using the Singapore Hospice Council as a model for the regional umbrella organisation. This was a brainstorming session to talk about shared issues and concerns and even explore the definition of hospice care, Dr. Goh says. The group agreed on a public statement clarifying that hospice and palliative care are not synonymous with euthanasia.
Among the challenges this organisation faced was the question of membership, given political sensitivities related to the status of Taiwan, China; Hong Kong, China; and the People's Republic of China and to the two Koreas. The organisers’ solution was to coin the term sector to define a geographical area where members were active in hospice/palliative care development. A sector could be smaller or larger than a “nation”, with Taiwan, China and Hong Kong, China each as sectors and the two Koreas together as a sector. Another question was where to register and base the Asia Pacific Hospice Palliative Care Network (APHN). Only Hong Kong, China and Singapore had the international law infrastructure to serve the region, and Singapore was chosen in order to avoid the political sensitivities mentioned above. However, the secretariat for APHN rotates from country to country, starting with Singapore when the organisation was formally incorporated in 2001.
The first regional conference on hospice care held in Singapore in 1989 drew 250 individuals from 10 countries. Their camaraderie and sharing of knowledge was an important boost for advancing hospice and palliative care in countries throughout the region. The second regional conference, also in Singapore, was held in 1996, while discussions about the Asia Pacific umbrella organisation were underway. At that conference it was agreed that future regional conferences would rotate to other cities in the region.
Why is forming a national association important?
"Never doubt that a small, group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has." Margaret Mead
There are many reasons to start an association. Forming an association can offer benefits to palliative care providers and professionals and, ultimately, improve the care seriously ill patients receive. Getting started only takes a small group of people who share a passion and can make a difference working with limited resources. Forming an association allows you to organise your efforts in a structured and meaningful way. Your organisation can be the voice of palliative care professionals and providers in the larger context of the healthcare system, whether it is in your town, country or continent. Your association will be the voice for people who otherwise would not be heard. The pillars of your association can be:
Clinical excellence, as defined in guidelines and standards for quality hospice and palliative care
Public policy and advocacy on behalf of palliative care issues and concerns with the government and the public
Education for palliative care leaders, professionals and others
Ultimately, improving quality of care and access to palliative care at the patient level, as illustrated by the Blueprint for Quality Access, NHPCO’s comprehensive strategic business plan for association leadership in pursuit of these goals.
Especially for a field such as palliative care, which is not well understood by the public and whose goals of improving quality of life and relieving suffering may seem rather subjective or intangible, promoting standards and quality of care can be one of the most important purposes for a palliative care association. This is essential to protect consumers and the public, but also to protect the reputations of those who are involved in palliative care development.
First, however, a core group of advocates must agree on definitions and hallmarks of quality palliative care relative to available local resources and cultural attitudes toward health and medicine. Based on those agreements, a committee or advisory body can be charged with turning the general principles into specific standards. In most cases “enforcement” will depend on persuasion, education and networking, rather than punitive measures. Eventually, however, palliative care may become subject to governmental licensure or credentialing processes.
Improving access to hospice and palliative care is a second long-term goal for a palliative care association. By supporting infrastructure development, professional development and education, the association helps to build the capacity of palliative care providers to respond to the public need. But ensuring universal, equitable access to palliative care services may also require more targeted assessment of gaps and unmet need, and specific capacity-building initiatives to respond to the unmet need.
The public health strategy for palliative care
By Jan Stjernswärd, Kathy Foley and Frank Ferris, Journal of Pain and Symptom Management, 2007, 33, 486-493.
The quality of life of at least 100 million people would have improved — if today's knowledge of palliative care was accessible to everyone. A Public Health Strategy (PHS) offers the best approach for translating new knowledge and skills into evidence-based, cost-effective interventions that can reach everyone in the population. For PHSs to be effective, they must be incorporated by governments into all levels of their health care systems and owned by the community. This strategy will be most effective if it involves the society through collective and social action. The World Health Organization (WHO) pioneered a PHS for integrating palliative care into a country's health care system. It included advice and guidelines to governments on priorities and how to implement both national palliative care programs and national cancer control programs where palliative care will be one of the four key pillars of comprehensive cancer control. The WHO PHS addresses 1) appropriate policies; 2) adequate drug availability; 3) education of policy makers, health care workers, and the public; and 4) implementation of palliative care services at all levels throughout the society. This approach has demonstrated that it provides an effective strategy for integrating/establishing palliative care into a country.
Forming a new organisation or an association to represent a professional community may seem like a daunting task at first glance. However, many others have gone down this path before and it is possible to learn valuable lessons from their experience while avoiding having to reinvent the wheel. The following publications and websites provide varied versions of the fundamental steps of getting started. Each may be a helpful resource for your association, but perhaps one of them will be particularly relevant to your particular needs and challenges.
Palliative Care Associations
By Julia Downing and Zipporah Merdin Ali
This document is chapter 41 of the Clinical Guide to Supportive and Palliative Care for HIV/AIDS in Sub-Saharan Africa and it outlines the role and value of palliative care associations and how to set up a palliative care association, with examples of national associations in Africa. The full document is available online, courtesy of the FHSSA (formerly the Foundation for Hospices in Sub-Saharan Africa) .
Starting an Association
By Knowledge Center Staff, ASAE & the Center for Association Leadership
If you are thinking about starting an association, this guide will show you the steps. Once you have a core group of leaders and have researched your association’s potential membership, this article suggests developing a mission statement, choosing an organisational structure, and applying for tax-exempt status. Along the way, decisions will have to be made about finances, programs and activities, management, bylaws and headquarters. Sources of additional information supply you with more details on all the procedures that need to be followed, with a particular focus on tax and corporate requirements in the United States.
How to Build a Good Small NGO
This document offers a wealth of resources by outlining and explaining the necessary steps when starting a non-governmental organisation (NGO). It gives guidance on planning to forming a Board of Directors, managing and finding funding, monitoring and evaluation, as well as several other subjects that may also be relevant to association-building.
Establishing a Nonprofit Organization
By the Foundation Center
This website by the Foundation Center includes a tutorial that describes twelve tasks that are necessary to accomplish when establishing a nonprofit organisation. Although this information is specific to the United States, it offers guidance on taking the first steps as a new organisation, which is applicable globally. The report is also available in French, Arabic and Vietnamese language versions.
The purpose of this site is to make resources available free to NGOs working in the development or humanitarian fields. This site offers manuals that can help NGOs build skills, and suggests other websites with good resources. This webpage also describes the process networklearning itself underwent to become an officially registered body in the Netherlands, where its core team is based.
An Internet Resource Guide on Organizational Development
This document is a collection of useful links to external resources designed for organisational development. Topics include capacity assessment, community outreach, financial management, financial sustainability, human resources, knowledge management, leadership, organisational learning, networks, policy advocacy, strategic planning and standards.
By the ABCD Institute in cooperation with the W.K. Kellogg Foundation
The ABCD (Asset-Based Community Development) Institute at Northwestern University believes that non-profit organisations are much more powerful community actors when they are not exclusively focused on needs, problems and deficiencies that they face in their daily activities, but rather, are effectively connected to the resources, or assets, of the local community. This website will help any organisation:
strengthen its own organisation by enhancing connections with the community's assets
strengthen the community by investing in the community's assets
strengthen current and future community based projects, activities and proposals.
By John Hailey, Rick James and Rebecca Wrigley
This link will take you to a paper that offers a brief overview of current thinking and practice in relation to the impact assessment of organisational capacity-building interventions. The paper highlights some challenges and then goes on to provide an overview of some of the practical approaches that have been adopted by NGOs and CSOs. The paper is a thought piece designed to engage organisations and individuals in a debate about the best practices to increase organisational capacity, especially in developing and transitional countries.
This article discusses how improvements can be made when a small group of dedicated people combine their efforts for a common cause. In this case, Yemen has a high death rate for mothers during childbirth, so the International Confederation of Midwives, an international non-governmental organisation (NGO) that unites 85 national midwives' associations from over 75 countries, came together to share experiences from the visiting countries, enriching the discussion, helping to identify pitfalls and lessons, and encouraging the way forward for Yemen in working towards the goal of reducing deaths each year of women during childbirth. The formation of the association will be a major step in the history of Yemen in assuring participation and recognition of the role that midwives play in maternal, child, and family health.
National associations can vary in size. An association can cover a state or province or a region within a country (example: Washington State Hospice and Palliative Care Organization); can be country-specific (example: Asociación Argentina de Medicina y Cuidados Paliativos); or large enough to cover an entire continent (example: Asociación Latinoamericana de Cuidado Paliativo (ALCP) or African Palliative Care Association [APCA] ). This section discusses the levels of palliative care development around the world and has a link to directories so you may look up national associations and palliative care providers in your region.
Hospice Information, a joint venture between Help the Hospices and St Christopher’s Hospice in the United Kingdom, offers a practical means of networking with colleagues at regional, national and international levels, helping people to access the tools and training that will enable them to develop their services and practice. It offers a free subscription service to a range of print and electronic publications with the latest UK and international news.
Hospice Information also hosts an online directory where you can find contact information on international organisations as well as provider- level listings. To find a listing on national associations, follow these steps:
Select "Hospices/palliative care worldwide";
Select "Find overseas service";
Under "Type of Organisation" select "National PCA" and click on "search".
The IAHPC maintains a global directory of hospice and palliative care providers.
International Observatory’s on End of Life Care Global Analysis on Palliative Care
Here you can find clear and accessible, research-based information about hospice and palliative care provision in the international context, with data for over 61 countries in Eastern Europe, Central Asia, Africa, South America and the Middle East, presented in ways that facilitate cross-national and regional comparison and analysis.
In 2006, the Observatory was commissioned to produce a document focusing on mapping the international growth of hospice and palliative care, especially in resource-poor countries. The map makes use of the United Nations' list of 234 countries and categorizes them into four different categories. You can access the full document here and the update commissioned by WPCA in 2011.
AIDS in Africa: Palliative Care in Resource-Poor Settings
This is a link to Chapter 19 of A Clinical Guide on Supportive and Palliative Care for People with HIV/AIDS, 2003 by Kathleen M. Foley MD, Felicity Aulino and Jan Stjernsward, MD, PhD, RRCP. The chapter discusses the considerations that one faces when working in a resource-poor setting. You can access the full document here.
Pain and Policy Studies Group of the University of Wisconsin, USA
The Pain and Policy Studies Group (PPSG) has assembled key information about drug control policy, administration and availability and has developed country profiles for each country in the world. These profiles are freely available at this site and are updated as new information becomes available.
WHO - Access to Analgesics and to Other Controlled Medications
Although necessary, drug control regulations, if overly restrictive, can restrict access to controlled medicines for therapeutic use. The World Health Organization (WHO) advocates for a balance between medical and regulatory requirements and offers guidance for pain management and gives resources on availability of controlled medications.
History of Hospice Care
The roots of hospice and palliative care date far back. This link takes you to National Hospice and Palliative Care Organization's History of Hospice, which outlines the evolution of end-of-life care in the Unites States. It is a good example of what can be accomplished when care is written into law, as it is in the United States under the Medicare Hospice Benefit.
Journal of Pain and Symptom Management, 2007, 33, 506-508. [Requires registration or payment of a fee.]
Hospice and palliative care has a history of collaboration. National associations of hospice and palliative care are now developing across the world and have produced a new partnership, the Worldwide Palliative Care Alliance. The alliance aims to support the scale-up of services across the world and share best practice across national associations. The alliance facilitates World Hospice and Palliative Care Day and advocacy activities such as the use of the Korea Declaration. There are a number of work groups covering areas such as education and training, organisational development, and quality and standards, which aim to assist national associations and hospice and palliative care services to develop. A third worldwide summit of national associations is planned for 2007.