From Concepts to Reality
Palliative Care in Resource-Constrained Settings for People Living with HIV and Other Life-Threatening Illnesses: The World Health Organization Approach
The World Health Organization’s (WHO’s) approach to palliative care is not linked specifically to cancer or any other disease; instead, it focuses on addressing the need for palliative care regardless of the health diagnosis.
Throughout the world, tens of millions of people are suffering from chronic, life-threatening conditions, and the majority are living in developing countries, where diagnoses tend to occur at a late stage of disease. Often, people have little access to treatment, and resources are quite limited. Consequently, many people are not getting the quality of care they should be receiving. Low-cost approaches can dramatically reduce end-of-life suffering. By focusing on how to bring the best palliative practices to resource-constrained settings, we can improve the lives of patients and their families.
Palliative Care Program Principles
- Developed as a comprehensive and public health approach
- Integrated with existing health systems and the continuum of care for chronic, life-threatening illnesses
- Tailored to the specific cultural and social context.
At WHO, we are working with many partners to bridge gaps in service in low-resource settings. Our partners include a number of countries with whom we are collaborating to ensure that palliative care is addressed in their health policies. WHO is also helping countries choose effective strategies for making the best use of their resources so that they may help the greatest number of people.
WHO’s principles and values are reflected in a comprehensive public health approach to palliative care. This approach is comprehensive in that it is not only about symptom relief but also about the psychosocial and spiritual well-being of the patient. It encompasses clinical excellence and works to ensure that all those who need palliative care can access the appropriate services. Palliative care does not occur in isolation; it must be integrated into existing health systems and the continuum of care for treating chronic, life-threatening diseases. It must also reflect particular local culture and societal norms. Our methods involve mobilizing resources and partners worldwide, for we cannot meet this huge challenge alone.
If a country is to have a successful palliative care program that reaches all those in need, it must have the active support of government. Simply put, policy must be backed up with action. WHO has a well-established and effective system for working with governments; one of the key ways in which we can support the work of our partners is by engaging public authorities. WHO also has a role to play in providing education and training and in giving guidance on how to provide quality services, how to organize services, and how to make drugs and supplies available. Whatever our role, the focus is always on the needs of customers. Our ultimate goal is to bring quality care to patients and their families.
The African Palliative Care Project
Of the many care delivery models being implemented in developing countries, community- and home-based care is the most important. To further expand access to services, we are implementing the Palliative Care Project in five African countries: Uganda, Ethiopia, Zimbabwe, Tanzania, and Botswana. These countries were selected on the basis of their high HIV seroprevalence rates and rising rates of cancer. The Palliative Care Project is a joint effort involving agencies and organizations inside these countries and many entities within WHO, including country, regional, headquarters, and other offices and departments dealing with HIV/AIDS and cancer.
Palliative care is critical in the five countries participating in this project, because together they account for more than 700,000 deaths annually from HIV/AIDS, cancer, and other diseases. The majority of these deaths are from AIDS; 10 percent are from cancer; and less than 2 percent are from other diseases. Of the five countries involved in the project, Zimbabwe, Ethiopia, and Tanzania have the most HIV/AIDS cases. However, the HIV/AIDS rate per 1,000 population is highest in Botswana, followed by Zimbabwe; the HIV prevalence rate in those two countries is more than 30 percent among people between ages 14 and 49.
The Palliative Care Project started in October 2001. The first phase—funded by UNAIDS and WHO—ran for 1 year. During Phase 1, priority was given to collaboration and to empowering the country teams so that they could gain ownership of the projects and local activities. Each team, with our guidance, undertook a situation analysis and a needs assessment. We encouraged networking among countries so that those whose palliative care programs were more evolved could help those whose programs were in the initial stages.
Teams in each country are currently working on proposals for projects that will bridge the gaps they have identified, specifically in areas in which they can provide quality services and improve organization. In the second phase, resources will be mobilized at the local, country, regional, and global levels. It is hoped that complete implementation of the second stage can start by the end of 2003; it has already begun in some countries.
Palliative Care in Africa Today
Situation analyses reveal a lack of awareness about palliative care in all participating countries except Uganda, which has had a government policy on the topic since 2002. Many good palliative care initiatives are being implemented, but not on a population-wide basis. Moreover, they tend to be hospice-linked initiatives that bring people excellent care but do not yet include a public health approach and are not integrated with any health systems. Unless this deficit is addressed, there is no possibility of expanding access to palliative care.
In many African countries, health care providers lack knowledge and skills about palliative care. Other impediments to making palliative care more broadly available include the perceived economic problems and strong restrictions that currently prevent people from having timely access to drugs. In this context, Uganda’s inclusion of palliative care in its national health policy is a major achievement. It is the first African country to have taken this step. We hope that the Ugandan experience can be a model for other countries, which is one reason WHO encourages networking. For example, hospice initiatives in Uganda and Zimbabwe are providing expertise and training that are a valuable resource for other countries.
Moving Forward
Having undertaken a situation analysis and needs assessment in rural areas, the Palliative Care Project team from Uganda has proposed a palliative care plan. It goes beyond simply a medical approach: It reflects that the needs of the dying require more than medical attention and that we must link to the sectors that are addressing other social needs. This approach is especially crucial because many of the families need support—no members of the household are working, and no social programs exist to meet their needs. Palliative care should not associate only with the health sector.
During a July 2002 meeting in Botswana, a discussion took place covering the results of the situation analyses, the needs assessments, and the project proposals. The country teams spent time defining what they need to develop in their projects, including
- initiating policy development,
- integrating services and training,
- formulating guidance tailored to the settings,
- improving access to drugs, and
- enhancing systems and monitoring and evaluating what is being accomplished.
We have stressed the need for monitoring and evaluation so that countries can continuously improve the quality of their initiatives.
We face many challenges in helping patients and their families in developing countries secure access to palliative care. We must continue to integrate palliative care into the continuum of care and ensure that this care is linked with community-based, family-oriented prevention settings. We hope that our experience to date will help us identify models that can be applied and adapted in other low-resource settings in African countries. To achieve this goal, we must strengthen our partnerships and foster a sense of collaboration.
