November 30, 1999
"Nothing would have a greater impact on the care of patients with advanced incurable disease than instituting the knowledge we have now to improve their quality of life."
-- Jan Stjernsward
Over 60 million men, women and children have been infected with HIV to date and more than 22 million people have died of AIDS. AIDS is now the primary cause of death in Africa.1 Prevention efforts initially dominated the public health agenda as the most realistic approach to reducing morbidity and mortality. Currently, however, attention to the need for care and treatment is increasing, allowing for the integration of these approaches into national health policies and priorities.2-5
There is an urgent need to extend the benefits of disease-specific therapy to people living with HIV/AIDS in developing countries. This includes antiretroviral therapy (HAART) and prophylaxis and treatment of opportunistic infections. Increased availability of these therapies should not only have a positive impact on survival; such treatment should also promote the key palliative care goals of pain and symptom management and improved quality of life, since disease-specific therapies in HIV/AIDS should have desirable effects on, and go hand-in-hand with additional care for, the palliation of suffering. As efforts to provide HIV-specific therapies to resource-poor countries continue, there remains a critical need to provide palliative care for the large numbers of HIV-infected persons in these countries who may or may not have access to anti-retroviral and other new therapies.
Palliative care is crucial in every care setting, rich or poor, for it is a philosophy of care that centers on improving quality of life for patients and their families. In this chapter, we focus attention on the need to integrate palliative care into national government strategies in order to address the pandemic in resource-poor settings, which includes many developing countries and low-income areas in some industrialized countries.
Defining Palliative Care
The World Health Organization (WHO) initially defined the term "palliative care" in connection with its initiatives to develop National Cancer Control Programs.6 According to WHO:
Palliative care is the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is the achievement of the best possible quality of life for patients and their families. Many aspects of palliative care are applicable earlier in the course of the illness, in conjunction with [other] treatment. Palliative care:
WHO recently updated this definition to reflect the full scope of palliative care, defining it as "an approach which improves quality of life of patients and their families facing life-threatening illness through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual."7
In this chapter, the term "palliative care" refers to a philosophy of care that includes pain relief, symptom control, and supportive therapies for adult and child patients and their families.
Both WHO and the Joint United Nations Programme on AIDS (UNAIDS) list palliative care "as an Essential Activity for Care and Support."8 These two UN agencies and the U.S. Agency for International Development (USAID), the development agency of the United States, conceptualize palliative care as a fully integrated component of a care system that emphasizes patients' quality of life by ensuring symptom control and supportive therapies combined, when possible, with disease-specific therapies. The provision of palliative care is also considered crucial in the framework of integrated community- and home-based care.
Palliative Care Services in Industrialized and Developing Countries
Palliative care services need to be integrated and balanced with other care services to address the needs of patients and their families. Symptom control and supportive therapies are necessary throughout a patient's illness, although the proportion of palliative care services varies with the patients' trajectory of illness and the setting in which they receive care. For example, in developing countries, where many patients with cancer and/or HIV/AIDS first seek treatment when they are already in a far advanced stage of disease, palliative care may be the major form of therapy provided to control a patient's symptoms, support the patient and family, address their psychological, cultural and existential distress, and serve as a prevention intervention. In settings with early diagnosis where disease-specific therapies are available, palliative care services will support such therapies, increasing as needed along the disease trajectory. For many people with HIV/AIDS, the lack of available disease-specific therapies increases their need for symptom control and supportive therapies to improve their quality of life. Figure 19-1 illustrates existing and ideal distribution of resources between active disease-specific therapies and palliative services for people with HIV/AIDS along the trajectory of their illness.6
In resource-poor countries, where both cancer and AIDS are typically diagnosed very late in the course of a patient's illness, palliative care services may dominate the available services. In settings where disease-specific therapies are available, palliative care services are balanced with disease-specific therapies.
It is important to stress that National AIDS Programs should avoid viewing palliative care and disease-specific therapies as an either/or phenomenon. The more modern and ethically appropriate approach is to view active disease-specific therapies and palliative care as part of a continuum in which patient needs and available resources determine the prioritization and balanced use of care strategies. Attention must also be given to how the available resources can be fairly distributed to the largest population in a cost-effective and efficient system of healthcare delivery.
Barriers to Implementing Palliative Care in Resource-Poor Settings
Numerous reports have outlined the major barriers in resource-poor settings to implementing the key elements of HIV/AIDS care and support.9, 10 These barriers range from serious limitations posed by scarce monetary, nutritional, and human resources to the low priority placed on AIDS care in national health budgets. Medical, religious, gender, social, and cultural barriers also exist -- including the social- and self-stigmatization of HIV/AIDS -- as well as behaviors and practices that impede the implementation of prevention and care policies.
People with HIV/AIDS often suffer significant psychosocial distress related to their experience of serious life-threatening illness at an early age, social ostracism associated with their illness, and the common and concurrent organic mental disorders caused by the HIV infection. They also suffer significant physical distress due to complications of opportunistic infections and tumors, which may include major symptoms such as pain, nausea and vomiting, fatigue, insomnia, anxiety, depression, and delirium.11 In addition, major environmental and geographical factors may add barriers to providing HIV/AIDS care and treatment; for example, many people living with HIV/AIDS in the developing world reside in rural areas far from available treatment resources.
An estimated 50% to 60% of people with HIV/AIDS worldwide have no access to healthcare professionals to address their medical needs. In Uganda, for instance, 88% of the population lives more than 10 kilometers from any kind of health facility, and many of these facilities lack trained personnel and the most basic medical supplies and medications.12 This lack of medical resources occurs in a setting where many people are also deprived of the most basic necessities of food, water, housing, and income.
WHO and UNAIDS have summarized major barriers to implementing the key components of HIV/AIDS care and support: 8
A National Public Health Approach to Palliative Care
Although it is far beyond the scope of this chapter to address ways of eliminating these barriers, we can offer some models for providing palliative care in developing nations. Against what appear to be overwhelming odds, several model programs suggest that care and treatment can be provided and that palliative care services can readily be instituted for the care of patients; however, a national strategy is needed to implement these models effectively.
WHO endorses a national program strategy that requires an initial three-part process for improving palliative care.4 The foundation measures for this public health approach are:
Figure 19-2 (PDF) provides a schematic representation of this three-pronged approach, which is discussed in the following sections. All three of these foundation measures together are necessary, along with committed leadership, to achieve an effective national program.
National palliative care policies and programs do not need to be specific to HIV/AIDS; they can address the needs of patients with any serious life-threatening illness, such as AIDS, cancer, congestive heart failure, neuro-degenerative disorders, and cerebrovascular disease. In fact, generic palliative care programs can allow for the coordination of a variety of policy agendas and may help reduce stigma associated with AIDS care. A strategic national program for palliative care offers the most rational and effective means of improving the quality of life for the greatest number of patients and families, even where resources are severely limited.13, 14
Step 1: Governmental Policy
Adoption of a National Palliative Care Policy
Establishment of a national policy for palliative care is the best way to ensure quality standards, funding, and accessibility of adequate care for the greatest number of patients and families. A national policy serves as the official recognition of a commitment of financial support; it can play a major role in facilitating the availability of essential drugs, as well as the necessary educational initiatives for healthcare professionals and the public alike, as part of its mandate. Numerous governments have already adopted a national palliative care policy, including Australia, Canada, Spain, Uganda and the United Kingdom.4
A national policy should set priorities that address access to palliative care across all healthcare settings, including hospitals, clinics, and home-based care. Palliative care needs to be available in both urban centers and rural areas as an integral part of the essential primary healthcare services that people can expect. These palliative care services should be sustainable and supported by healthcare professionals. Government budgets should appropriately address the need for essential drugs and provide medications and services ranging from durable medical goods to counseling programs.
A number of resources exist to aid the development of a national health policy. WHO's National Cancer Control Programs: Policies and Managerial Guidelines can be used as a model for the development of specific policies, as well as national palliative care and/or AIDS programs in general.15
To integrate palliative care into a national healthcare policy, governments should ensure that:18
Establishment of a national program, in which national healthcare policy is situated, may include the following activities: 15
The functions of an established national program to provide palliative care are to: 15
UNAIDS has developed a four-guide series for the strategic planning process for a national response to HIV/AIDS, including situation analysis, response analysis, strategic plan formulation, and resource mobilization.16 The Canadian Palliative Care Association's consensus document on Standardized Principles and Practice of Palliative Care presents guidelines for national committees to follow in developing palliative care standards; it is a clear framework for this process, with sample goals, objectives, essential steps, accompanying policies and procedures, and desirable outcomes (see also www.chpca.net).17
Integrated Community- and Home-Based Care Policy
In order to make services sustainable, the national policy should allocate resources to home-based care as well as to in-patient palliative care services and outpatient clinic services. Successful national HIV/AIDS palliative care programs that focus attention on integrated community- and home-based care are seen as the most efficient and cost-effective approach to healthcare delivery.
Throughout Africa, model programs are demonstrating the beneficial integration of hospice, community- and home-based care for people with HIV/AIDS.18 For example, the South Coast Hospice in KwaZulu-Natal, South Africa, developed an integrated care program in which patients with HIV/AIDS are referred to teams of nurses and trained community caregivers who care for them in their own homes.19 The program has halved average patient stays at the local hospital, and extended care provided at home costs less than a 2-day stay in the hospital.20 The Hospice Association of South Africa (HASA) was supported by the National Department of Health to replicate this model in seven pilot programs.21, 22 People with HIV/AIDS and their families are cared for by and in their immediate communities with help from outside agencies and healthcare professionals who are committed to implementing palliative care standards. HASA is now demonstrating the physical, financial, and social benefits of linking micro-community and hospice care to the formal care system of hospitals and clinics, empowering communities to better deal with the burden of disease as well as to decrease incidence and stigma. HASA's integrated community-based home care model is depicted in Figure 19-3 (PDF).
Hospice Uganda promotes similar work through its government-supported community-based hospice program, providing home care and serving as a resource center to the community for healthcare professional training, public education, and advocacy for hospice services.49
Step 2: Education
The second foundation measure in a national public health approach to palliative care involves healthcare worker training and public education.
Training Healthcare Workers
Education of healthcare professionals is crucial for the dissemination and implementation of existing palliative care knowledge. Training programs should exist for medical students, residents, practicing physicians, nurses, pharmacists, social workers, pastors, community-based home-care workers, and rural health workers. Successful experiences in several countries indicate that palliative care education can be incorporated into existing healthcare system training programs.23-25 Distance learning and certification programs developed for each group of healthcare workers will further increase education coverage. Education must be appropriate to the situation in which they are performing their activities.
Training in palliative care focuses on six major skill sets:
WHO recommends that multi-dimensional education include at least a minimum of learning in three important areas:6
Various programs in resource-poor settings for the training of healthcare professionals have illustrated how the above-mentioned program components can be implemented. HASA initiated a model program for medical student training with a Diploma in Palliative Medicine at the University of Cape Town. With no palliative medicine journals, minimal undergraduate and postgraduate training, and very few palliative care physicians in the country, this program is beginning to develop a standardized knowledge base within a group of educated professionals. HASA also trains professional nurses in palliative care at nine campuses in South Africa.
The Mildmay Centre for AIDS palliative care in Uganda provides specialist outpatient palliative care and rehabilitation, using a train-the-trainer approach to disseminate its program and philosophy of symptom control throughout sub-Saharan Africa.11, 26, 27
Educating Family and Volunteer Caregivers
In developing countries, empowerment of family members and volunteers to be effective palliative caregivers may be the most realistic approach for meaningful coverage, especially in rural areas. Experts emphasize that home care should not become a version of acute care delivery at home: it should rather "encompass personal care, personal services, social companionship, and applied medical care," as reflected in education and training.4 Training for volunteer caregivers is available through hospices and other care-giving bodies. St. Luke's Hospital in South Africa, for example, runs intensive trainings for community volunteers who will work with professional teams to provide care in home-based settings.
Educating Traditional Healers
In developing countries, traditional healers are a potential professional resource for the dissemination of palliative care knowledge. Government-sponsored education of these healers has sought to increase coverage areas of effective palliative care and symptom control awareness in Mozambique, Zimbabwe, Uganda, and South Africa. For example, in KwaZulu-Natal, South Africa, the AIDS Foundation's collaboration with traditional healers resulted in a training curriculum to increase the impact of AIDS prevention, education and management.12
Resources for Education
WHO's Cancer and Palliative Care Unit developed a series of monographs addressing the principles and practice of palliative care for both child and adult cancer patients, which can be adapted for National AIDS Programs. These include publications on cancer pain relief, guidelines for opioid availability, symptom relief in terminal illness, and palliative care for children, all suitable for professional education in palliative care for HIV/AIDS.6, 28-30
Professionals. In addition to the WHO monographs, the following international documents are available for the education of professionals worldwide.
Pediatric clinicians. In the arena of pediatric palliative care education, the US National Pediatric and Family HIV Resource Center (NPHRC), a non-profit educational center, has focused on educating professionals who care for children and families affected by HIV/AIDS (www.pedhivaids.org).39 NPHRC's François-Xavier Bagnoud International Pediatric HIV Training Program has trained nearly 120 doctors, nurses, social workers, and other healthcare professionals from around the world in the care of children with HIV/AIDS (www.fxbcenter.org).40
Nurses and midwives. Training resources are available specifically for nurses and midwives that are particularly useful in resource-poor settings.
Palliative care education needs to be made available at the family, community and national levels. Patients, families and caregivers need good information regarding the illness, symptom control, options for care and how care can be provided. Community and religious leaders, legislators and other community members, as well as government officials, policymakers and NGOs, need information about the essential components of palliative care and how and where it is provided to allow them to be effective supporters and advocates of palliative care at both the community and national levels.
There is a major need for public education campaigns to facilitate community members' awareness of the nature of HIV disease and to provide them with information and knowledge for choosing care options when disease-specific therapies are unavailable or no longer appropriate. Such campaigns must emphasize that palliative care is focused on preventing needless suffering. There is also a particular need to educate the public about the role and appropriate use of analgesic drugs in pain management. According to WHO, it is essential that the public be made aware of the following:6
Public palliative care education need not be AIDS-specific. It must be delivered in a culturally sensitive manner that is accessible to every segment of the population. Media campaigns can be effective in promoting awareness of palliative care issues, as can resource centers and overall community participation in care. Where illiteracy precludes written educational materials, video and theater are possible dissemination options. In settings where written materials are typically unavailable and radio is a common method of communicating information, major radio campaigns would be appropriate. "Scribes" or literate members of volunteer groups may also participate in education efforts.12 All arenas of public education should give special consideration to stigma reduction. Distance learning and certificate programs for volunteer caregivers in the community can further advance education efforts.
Step 3: A National Policy for Drug Availability
A national palliative care strategy should include basic directives that focus on both the necessary legislation and the administration process for drugs essential to the care and treatment of people with HIV/AIDS. To provide appropriate symptom control and supportive therapy, a national palliative care program must include policy measures regarding the need for a wide range of drugs to effectively address and control opportunistic infections and the major symptoms that patients with HIV/AIDS report, including pain, nausea and vomiting, delirium and agitation, insomnia, fatigue, depression and anxiety. Such national policies should reflect laws that address the importation and distribution of needed supplies, and also determine the appropriate amount of drugs to be imported and distributed.
Particular attention should be given to pain management. Numerous studies suggest that more than 80% of HIV/AIDS patients with advanced illness have significant pain, which is currently both under-assessed and under-treated. In a recent study in Uganda, hospice members found that pain was the first major source of distress for both cancer and AIDS patients and their relatives.20 An excellent resource for the necessary legislative and administrative process for pain medications is the Guide To Opioid Availability, published in the WHO monograph Cancer Pain Relief.30 This document can help governments focus attention on developing a national policy for drug availability for palliative care drugs, particularly opioids.
Psychological symptoms vary in prevalence, occurring in 10% to 60% of patients during the course of their illness. Both delirium and dementia are common features of advanced AIDS, and the use of psychotropic drugs to manage these symptoms must be included in a country's Essential Drug List. (The WHO Action Programme on Essential Drugs recommends that every country maintain an Essential Drug List that includes the basic drugs needed to treat the diseases and conditions in that country. This assures that decisions regarding resource priorities are based on medical needs of the majority of the population.)
Other chapters in this book describe a wide range of drug regimens for particular symptoms in patients with HIV/AIDS.28 These drugs, preferably in their generic form when available, should be incorporated into Essential Drug Lists. Essential Drug Lists should also include medications for patients' palliative care needs, such as non-opioids, opioids, and adjuvant analgesic drugs based on the WHO three-step analgesic ladder. A model Essential Drug List for cancer patients can be easily adapted for patients with HIV/AIDS but should also include cost-effective drugs for the treatment of opportunistic infections and their serious side effects, antidepressants, neuroleptics and anti-convulsants, as illustrated in Table 19-1 (PDF).
National drug policy should address the handling of medications. A model of such a document is Uganda's Guidelines for Handling Class A Drugs.44 WHO has suggested essential components for guidelines that regulate health professionals who dispense opioid drugs:30
Financing must be secured for essential drugs. In Latin America, the "South-South Cooperation" Initiative is using a strategy of partnership among neighboring countries to become more powerful advocates for cheaper medications, particularly AIDS drugs. The Bamako Initiative is a revolving fund for financing essential drugs, with countries joining together to decrease prices and maintain commitment to buy and distribute them. In India, the production of cheap immediate-release morphine has aided the distribution and affordability of this essential drug.45 The cooperation of the pharmaceutical industry is needed to spread this practice to other nations.
Drug availability must include medications appropriate for pain relief and symptom control, regardless of the availability of other types of treatment. Access to palliative care services will always be essential, whether or not people have had access to other therapies including ART. In 1997, the UNAIDS HIV Drug Access Initiative (DAI) was developed to improve access to ART in resource-poor areas. Until 1999, DAI focused exclusively on ART, but it now is also promoting other means of treatment -- including palliative care (see www.unaids.org).46
Model Initiatives to Advance Palliative Care in Resource-Poor Settings
Palliative Care in Uganda
The Ugandan Ministry of Health included palliative care as an integral part of all Essential Clinical Care in its National Health Sector Strategic Plan 2000/01-2004/05.47 48Table 19-2 details the palliative care component of the Ministry of Health's mandate for essential clinical care. Palliative care is in the core budget of the minimum healthcare package, with set goals for implementation and verification. Uganda has an essential drug program, and the revision of restrictive drug laws now allows for trained palliative care nurses to prescribe and administer oral morphine in home-based settings.
The program has developed a broad public education policy for AIDS that includes professional education in palliative care at all healthcare levels. The government supports "Hospice Uganda" as a resource and training center for community- and home-based palliative care.49 Various NGOs, including The AIDS Support Organization (TASO), provide counseling, care and support services, further increasing the reach of palliative care in underserved areas. Uganda's Partnership for Home-Based Care in Rural Areas and the Mildmay Center for Palliative HIV/AIDS Care in Kampala have been cited in UNAIDS' Best Practice Collection.27
The Enhancing Care Initiative
The Enhancing Care Initiative is a collaborative effort of the Harvard AIDS Institute with AIDS Care Teams in Brazil, Puerto Rico, Senegal, South Africa and Thailand. The focus of this initiative is to implement continuity of care programs in 10 care areas. These include prevention approaches with HIV counseling and testing, basic medical care services, and community-based care with care for the dying and care for caregivers. All 10 care areas have concurrent professional educational programs. Each team has developed a unique approach to meet regional needs, working to integrate a comprehensive AIDS care program into every level of the healthcare system, including communities and families (Available at www.eci.harvard.edu).50
WHO: A Community Health Approach to Palliative Care for HIV and Cancer Patients in Five African Countries
WHO is developing a Community Health Approach to Palliative Care for HIV and Cancer Patients in five African countries (See Table 19-3 for prevalency rates in participating countries).51 The program is unique in combining policy advocacy for both AIDS and cancer patients within a national healthcare program. Each participating country is asked to develop and integrate palliative care initiatives into their national health policies. The program's long-term goals are to foster national policies in palliative care, provide public and professional education on palliative care, and increase drug availability for the appropriate treatment of patients with cancer and AIDS. The Pain and Policy Studies Group at the University of Wisconsin is providing technical support to this project through its resource center to help facilitate drug availability for opioids.52
The United States
The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act is a national policy of the US government funding healthcare and support services -- including counseling, home and hospice care -- for underserved and resource-poor populations affected by HIV/AIDS.53 In 1999, the Health Resources and Services Administration (HRSA) awarded five grants specifically for palliative care through the Special Projects of National Significance (SPNS) portion of this legislation.54
As part of its development assistance, the U.S. government advocates palliative care through its Leadership and Investment for Fighting an Epidemic (LIFE) Initiative by supporting the expansion of palliative care in community-based treatment of HIV/AIDS and opportunistic infections along with the innovative use of ART and TB prevention and care. USAID, the Department of Health and Human Services (HHS), and the Department of Defense collaborate in this $100 million initiative by funding care and treatment improvements, primary prevention, and capacity and infrastructure development in 13 target countries in Africa and India.55
The United Kingdom
The National Health Service (NHS) of the UK supports hospice and specialist palliative care services, including professional educational programs. This is an evolving national policy that is working to provide better access to care and the development of care pathways for patients with various diseases who can benefit from palliative care. Patients with AIDS, cancer and a wide range of other chronic illnesses are currently included in government-supported palliative care programs. The program provides a seamless continuum of care from in-patient palliative care services to community- and home-based hospice programs.56, 57
Based on experience to date, the following recommendations may be made regarding palliative care in resource-poor settings.6