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HIV/AIDS Palliative Care Guidance#1The President's Emergency Plan for AIDS Relief HIV/AIDS Palliative Care Guidance #1 Introduction Comprehensive palliative care is essential to the health and well-being of people living with HIV/AIDS (PLWHA) and is an integral part of the President's Emergency Plan for AIDS Relief (the Emergency Plan). Palliative care has traditionally been associated with terminal or end-of-life care. However, current thought and practice and Emergency Plan policy take the broader view that palliative care encompasses care provided from the time that HIV is diagnosed and throughout the continuum of HIV infection. The Emergency Plan envisions a comprehensive, holistic, interdisciplinary approach to HIV care. It recognizes that different types and intensity of comprehensive palliative care interventions are needed, depending upon the stage and progression of disease and the needs of the individual and family. These elements include: 1.1 Definition of Palliative Care Palliative care, as stated in the U.S. Five-Year Global HIV/AIDS Strategy, aims to achieve optimal quality of life for PLWHA and their families and minimize suffering through mobilizing clinical, psychological, spiritual, and social care throughout the entire course of HIV infection. It also provides the routine monitoring that is essential to determining the optimal time to initiate ntiretroviral therapy (ART), and it continues during and after the initiation of treatment. Palliative care includes and goes beyond the medical management of infectious, neurological or oncological complications of HIV/AIDS to comprehensively address symptoms and suffering throughout the continuum of HIV disease. Routine, confidential counseling and testing is an essential component of palliative care to identify those who need or will need palliative care, family members who could also be infected and in need of care and, family members and partners not infected and in need of prevention. Principles of an effective HIV/AIDS care program include the following.
1.2 Types of Palliative Care Interventions Palliative care for HIV-infected individuals becomes increasingly important as the disease progresses. The Emergency Plan can support all areas of comprehensive palliative care offered throughout the course of HIV disease but what individual country programs provide can vary in type, scope, and intensity, based on the progression of the disease, availability of anti-retrovirals (ARVs), and the needs of the individual and family. The Emergency Plan can support The Emergency Plan can support the following four categories of essential palliative care, where compatible with national guidelines: Clinical care is generally provided by nurses, midwives, clinical officers, community and volunteer health workers, traditional healers and physicians. It includes a wide range of treatment and care including: routine, confidential HIV counseling and testing; routine follow-up to determine the optimal time to initiate ART; prevention and treatment of opportunistic infections (OIs) such as tuberculosis (TB); HIV prevention and behavior-change counseling, alleviation of HIV-related symptoms and pain; time-limited support for clinically malnourished PLWHA; and support for adherence to anti-retroviral therapy (ART). Illustrated below are types of interventions that Emergency Plan programs should provide, based on the presence or absence of clinical symptoms: Asymptomatic clinical care is toward persons who are not experiencing specific signs or symptoms of HIV disease. These interventions include: routine clinical monitoring and assessments, including those that assist in determining the optimal time to initiate ART (including laboratory and clinical evaluations); services to prevent TB, other OIs and malaria, such as the use of isoniazid prophylaxis, cotrimoxazole; impregnated mosquito bed nets (preferably long-lasting); safe-water systems; nutritional assessment and counseling; HIV prevention counseling, promotion of good personal and household hygiene; and the assessment and management of HIV-related psychosocial problems. Additional guidance will be forthcoming on the elements of basic preventive care for PLWHAs and their families. Symptomatic clinical care is directed toward individuals who are experiencing progressive immunological impairment and related HIV symptoms. These interventions include: treatment of symptomatic illness; pain control (with opiods and non-opiods); prevention of TB, other OIs, and malaria using medications such as isoniazid prophylaxis, cotrimoxazole, and/or the use of (preferably long-lasting) impregnated mosquito bed nets; safe-water systems; nutritional assessment and counseling; promotion of good hygiene; the assessment and management of HIV-related psychosocial problems; basic nursing care (including but not limited to assessment and monitoring of symptoms and adherence to medications; assistance with bathing, mobility, mouth care and skin and wound care); preparation and support prior to and throughout ART; and time-limited nutrition rehabilitation and supplementation for clinically malnourished PLWHA. Future guidance will provide details on food and nutrition programs the Emergency Plan can support. United States Government (USG) teams in Emergency Plan countries that are also part of the President's Malaria Initiative should coordinate closely and use both funding streams creatively to serve HIV-affected individuals in the distribution of (long-lasting) insecticide-impregnated bednets. End-of-Life and bereavement care is directed toward the individual and family members in need of intensive management of symptoms and pain [using non-opioids and/or opioids and directed by the World Health Organization (WHO) analgesic ladder1]. They include culturally appropriate end-of-life care and bereavement interventions, as well as appropriate succession planning and referrals for orphans and vulnerable children. Psychological care addresses the non-physical suffering of individuals and family members, and can include: mental health counseling; family care and support groups; support for disclosure of HIV status; bereavement care; development and implementation of culture- and age-specific initiatives for psychological care; and treatment of HIV-related psychiatric illnesses, such as depression and related anxieties. Spiritual care addresses the major life events that cause people to question themselves, their purpose and their meaning in life. The interventions should be sensitive to the culture, religion(s) and rituals of the individual and community, and can include (but are not limited to): life review and assessment; counseling related to hopes and fears, meaning and purpose, guilt and forgiveness; and life-completion tasks. Social care assists individuals and family members in maintaining linkages to and use of care, preventing HIV infection, and ensuring adherence to treatment. These can include: community-based support groups; community mobilization and leadership development of PLWHA; efforts to reduce stigma; legal services to assist with succession planning, inheritance rights, and legal documentation (such as a living will or power of attorney); assistance to secure government grants, housing, or health care; linkages to food support and income-generating programs; efforts to increase community awareness of HIV care, treatment, and prevention; and other activities to strengthen affected households and communities. Prevention for HIV-infected persons has been shown to be both effective and efficient at preventing new infections Emergency Plan programs should incorporate prevention for positives into palliative care and treatment. Models to provide these interventions can include: interventions for sero-discordant couples, including confidential testing and ongoing counseling; community and clinic-based support groups; case-management and provider-delivered prevention messages focused on disclosure; partner testing; correct and consistent condom use for populations engaged in high-risk behavior and mutual fidelity.2 1.3 Packages of Care Participating USG agencies have discussed extensively the concept of providing a minimum set of evidenced-based care interventions, or a "package of care" for HIV-infected persons in recent months. The Emergency Plan palliative care programs should provide this set of interventions regardless of stage of HIV disease or clinical condition. Additional guidance on Preventive Care Packages for Adults and Children will be forthcoming. The Emergency Plan recognizes that a "package of care" cannot be standardized for all countries. Each USG team should adapt the basic package and support care packages in a way that is appropriate for the country in which it works. 1.4 Palliative Care Delivery Sites Comprehensive care includes a wide range of interventions to improve the quality of life for the individual and family. These interventions are not specific to any one setting or location. Delivery sites for care generally are home-, community-, and/or facility-based. As discussed below, it is essential that Emergency Plan programs link these interventions and sites to ensure coordinated access to a comprehensive array of primary, secondary and tertiary care and hospice care. Home-Based Care Home-based programs deliver various types of HIV/AIDS care in the patient's home. Given the relative availability and affordability of home-based care programs for most resource-poor settings, these programs play a significant role in providing access to comprehensive palliative and supportive care for a large proportion of individuals and families affected by HIV disease. However, many home-based programs either do not include or are missing key palliative care interventions. The introduction of comprehensive care into home-based programs requires the training and education of medical providers (e.g. nurses, clinical officers, and physicians, including pediatricians and pediatric nurses) and community-care providers in the following areas:
Community-based Care Community-based care is provided in a variety of community settings including free-standing outpatient clinics, day care centers, school or university-based clinics, community health centers, workplace clinics or stand-alone hospices. These delivery sites often provide a wide range of interventions, including primary care, management of acute and chronic medical conditions and supportive care. Emergency Plan programs should also link them with inpatient facilities, such as provincial or district hospitals. Facility-Based Care Hospital-based outpatient clinics and inpatient facilities provide direct and more advanced clinical care in the facility and are essential sites for the delivery of HIV palliative care. Both types of delivery sites provide access to health and basic social-service providers trained in the diagnosis and management of acute and chronic medical conditions and supportive care needs and are often linked to home- and community-based care providers for patient follow-up. Hospice Care Hospice is an approach to delivering end-of-life care, often provided in the home by trained nurses and or community care-givers, in community-based and hospital-based facilities, or in a free-standing hospice. Hospice care includes intensive end-of-life care, such as severe pain control with opioids and other medications3, as well as support in the last months of life for individuals with a terminal illness. Hospice also provides intensive family and bereavement support. 1.5 Networks, Linkages and Integration As stated in the U.S. Five-Year Global HIV/AIDS Strategy, the Emergency Plan works to integrate the delivery of prevention, treatment, and care across facilities, clinics, communities, and homes, to build and sustain comprehensive HIV/AIDS care systems. USG teams should develop network systems, foster linkages, and establish and strengthen referral to care at various levels. Network systems represent formal relationships among providers to create a comprehensive system of care, and include the following:
Networking should include close coordination and collaboration with other groups and organizations that provide complementary care. These may include hospitals, clinics, hospices, schools, universities, home- and community-care programs, government and international partner programs in other sectors, community groups, legal services, food and nutritional support providers, transportation between and among referral sites and home, PLWHA support groups, orphans and vulnerable children programs and advocacy organizations. USG teams in Emergency Plan countries should also coordinate closely with the President's Malaria Initiative and programs funded by the Global Fund to Fight AIDS, Malaria and Tuberculosis. Networks A health network consists of a system of clinical and non-clinical programs for the care of PLWHA and families. Governments (particularly Ministries of Health), community-based and faith-based organizations (CBOs and FBOs), non-governmental organizations (NGOs), private companies, or consortiums composed of some or all of the above entities. A network is a system of care that includes primary, secondary, tertiary, and home-based care; for example, a regional treatment center that is associated with a district clinic, a health post, and a home-based treatment program. In such a system, patients are able to access each service within the network based on need. Components may be both facility- and non facility-based. In optimal circumstances, comprehensive care is provided across various delivery sites and through an integrated model of community care which emphasizes a continuum of care between the community care provider and all sectors of the formal health care system. Building Networks through Program Linkages and Integration Linkages and integration provide for the coordination and collaboration of multiple provider groups through referrals and co-location. For example, a linkage model could consist of an HIV/AIDS clinic linked with a palliative care provider, an orphan and vulnerable children (OVC) program, a TB clinic, a voluntary family planning program, and a food assistance program, with the client being referred among programs for access to comprehensive care. An integrated model could include the establishment of ART within an existing home- and community-based care program. Networks may be built through the integration of palliative care into all existing HIV prevention, treatment, and care programs, or through linkage of home-based, outpatient, hospital, and hospice providers. Examples of network development in specific program areas the Emergency Plan can support appear below.
Care providers should coordinate and collaborate with other government and donor programs including the President's Malaria Initiative and the Global Fund to Fight AIDS, Tuberculosis, and Malaria, to maximize efficiency and effectiveness of service delivery and minimize duplication of effort. 1.6 Food and Nutritional Support Food and nutritional support can be an important component of palliative care. It must also be noted, however that the Emergency Plan works in many communities that food insecurity broadly affects. Larger issues of food security are extremely complex, and other organizations and international partners have a strong comparative advantage in the area of food assistance. Thus a key precept of interventions supported by the Emergency Plan is to remain focused on HIV/AIDS, and to provide support for food only in limited circumstances and leverage other resources whenever possible. Further guidance on the limited circumstance in which the Emergency Plan can support food and nutrition interventions is in preparation and the Office of the Global AIDS Coordinator will disseminate it shortly. 1.7 Tuberculosis and HIV/AIDS TB is the most common OI in HIV-infected persons in sub-Saharan Africa, and in some facilities up to 70 percent of TB patients are HIV-infected. It is also a leading cause of death in individuals with AIDS in developing countries, and accounts for 15 percent of deaths in PLWHA in Africa. Therefore, interventions that target TB in HIV-infected persons have a significant public health and individual clinical impact. Prevention and treatment of TB are thus an integral part of comprehensive palliative care, and the Emergency Plan clearly defines care as including treatment and prevention of OIs, including TB. Emergency Plan goals relating to TB are the following: 1) to diagnose, care and treat all PLWHA with active TB disease; 2) to provide HIV counseling and testing for all patients who are seeking care in TB programs; and 3) consistent with local guidelines to provide preventive TB care for HIV-positive persons who are not diagnosed with active TB, and to ensure that all eligible co-infected PLWHAs receive ART. Resources must be allocated to achieve these goals, and Emergency Plan programs should test all persons with TB for HIV. Successful prevention and treatment of TB in HIV-infected individuals can mitigate TB-associated morbidity in patients and significantly reduce TB-associated risk of death. Treatment of TB also reduces TB transmission in the community and in care settings. Programs should seek all opportunities to improve coordination of TB and HIV/AIDS interventions. 1.8 Wrap-around Interventions Wrap-around programs are programs not funded by the Emergency Plan, but can improve the quality of life for people infected and affected by HIV/AIDS and complement the programs of the Emergency Plan. These programs include those funded by the USG (e.g. USAID Development Assistance, etc.), other international partners including the Global Fund, the United Nations (World Food Program, UNICEF, etc) and other partners. They include, but are not limited to initiatives that: - Strengthen household livelihoods; 1.9 Pediatrics and Palliative Care Palliative care for children mirrors that of adults, inasmuch as it includes clinical, psychological, spiritual, and social care implemented by a multi-disciplinary team. There are, however, important differences between adults and children that affect providers' decisions related to palliative care. Children are growing, and have different metabolisms and different manifestations of HIV disease. Palliative care for children begins when an infant is exposed to HIV (in utero, in labor, and/or through breastfeeding). It continues through diagnosis, care, and treatment, and extends to end-of-life care. Further discussion of this topic is included in Appendix I. It is important to recognize that the "family" is the unit of care when it comes to addressing the needs of children. Working with families can be an entry point for identifying HIV-infected children. Programs should be established to provide access to a coordinated system of both adult and pediatric care. The goal is to identify all HIV-infected family members and to provide (directly or through referral) access to a wide range of comprehensive care. These include HIV prevention, treatment and other support such as family mental health and bereavement counseling and voluntary family planning. 1.10 Gender Issues Gender is a critical issue in palliative care. HIV/AIDS has increased the palliative care burden on women and girls in developing countries, as they are often responsible for those living with HIV in their families and communities. Women and girls are usually not remunerated for the care they provide, which has social, economic, and health implications for themselves and their families. Efforts are needed to involve men in community care giving for PLWHA. Palliative care programs supported by the Emergency Plan should pay special attention to this issue, and work to facilitate dialogue and policies that improve support for women and girls who are caregivers, and to foster the involvement of men. The equitable distribution of medications to ensure inclusion of women and girls must receive high priority. Programs should also work with men on the issues of gender power imbalance and domestic violence as they relate to care, as well as their roles in home-based care. More attention must also be given to creating legal protections and creating linkages to legal services for women and girls. Palliative care programs need to act as instruments of change, highlighting the need for effective efforts to ensure gender-sensitive access to treatment and care issues. 1.11 Human Capacity Development and Provider Education and Training In many developing countries, inadequate human resources and palliative care training policies and weak or non-existent institutions contribute to the insufficient supply of health care professionals and other caregivers. Limited support for caregivers also deteriorates the human capacity which is essential to delivery quality care, and it is important for programs and policies to consider the extraordinary physical, psychological, practical (food and housing), and spiritual demands caregivers face. Support for all caregivers is important to maintaining a viable and effective health-care team. This support should address economic and subsistence needs of caregivers, education and skills development, caregiver recognition and access to HIV care for caregivers who are living with HIV/AIDS. Several categories of health care providers are necessary for an effective palliative care program. Each has a unique role and training needs. Medical Providers The role of medical providers (physicians, clinical officers, and cadres of nurses) includes assessment, prevention, diagnosis, treatment, and management of pain and suffering experienced by PLWHA and their families. To fulfill their role, providers need training in the use of standard protocols for assessing pain, symptoms, and TB and other OIs. They must be able either to directly diagnose and treat the patient, or to refer the individual for appropriate care. Given the severe shortage of physicians, nurses must be trained in aspects of diagnosis and management as appropriate under local professional standards of practice and licensure. Access to continued training for all clinicians is essential. Traditional Healers The Emergency Plan acknowledges the important role of traditional healers in delivering health care to many individuals and families. They are often the link between the community and the health care system and are important partners in improving access to care. When appropriate, they should be included in the palliative care team. It is also important to recognize the critical cultural, supportive, psychological, and spiritual role of the traditional healer when patients and their families are searching for meaning in illness and death. To support the participation of traditional healers in the palliative care team, training should be made available to them. Community Health Workers The use of trained community health care workers such as volunteers, medical assistants, counselors, and family members could provide opportunities to expand the delivery of palliative care in the community setting. Trained community health workers can provide basic nursing care, support for treatment adherence and HIV prevention, monitoring and assessment of People Living with HIV/AIDS The success of palliative care programs depends on the involvement and leadership of PLWHA. As a result of their personal experiences, PLWHA can contribute to better understanding of the true needs of other PLWHA and best practices in HIV care programs. PLHWA are often the best counselors and educators for others who are HIV-positive and their families, particularly in regards to treatment literacy and symptom and pain management. All care and treatment programs must make a concerted effort to recruit PLWHA and support leadership roles for them. Program staff who are PLWHA must receive the same level of palliative care as the program recipients to ensure full PLWHA participation in program leadership. Interdisciplinary Teams Given the many ways in which HIV disease affects individuals, communities, and families, it is important to establish interdisciplinary teams able to address the physical, psychological, supportive, and spiritual needs of the individual, family, and orphans. This collaboration allows for a more integrated and holistic approach to complex and interrelated problems and needs of adults and children infected or affected by HIV/AIDS. These teams should consist of professional health care workers such as palliative care nurses, community volunteers, clergy or religious leaders, family members, mental health counselors, traditional healers when appropriate, and other health care and support service providers and community workers. The actions listed below promote human-resource capacity development. Each offers a unique opportunity to increase the capacity of the overall health care system:
Each of these options provides opportunities to expand human-resource capacity for delivering palliative care. It is important that these and other activities be considered elements in establishing sustainable care programs. 1.12 Policy Development Public policies that advance development and implementation of palliative care are critical to the success of the Emergency Plan. Policies can be generated from various levels of government and public and private institutions, such as medical and nursing schools, public and private health care facilities, and CBOs and FBOs. Policies often prevent scale-up of care because of legal or regulatory restrictions on who can deliver care. Many types of providers can provide excellent
The advancement of these policies is often accomplished through a well-organized effort to bring together leaders and practitioners in the field of palliative care with senior administrators and decision-makers in government and institutions. This type of collaboration promotes development of policies that reflect both the existing capacity within the government and health care system and the socio-cultural conditions of persons living in the community, and that respond to the specific health and supportive needs of PLWHA. The following are among the actions that can be taken to develop appropriate policies:
The U.S. Five-Year Global HIV/AIDS Strategy defines supply-chain management as a systematic process to "create, enhance, and promote an uninterrupted supply of high-quality, low-cost products that flow through an accountable system." The goal of supply management is to eliminate drug diversion, counterfeiting, waste, and gaps in distribution systems to ensure an 1. Rapid scale-up of logistic systems to manage supplies and products. Each of these strategies has implications for the delivery of palliative care and program management. Palliative care providers at all levels of the health system need access to specific drugs and supplies. In addition to medications for pain and symptom relief and OI management, providers need access to items necessary for managing clinical conditions (e.g., drug-dispensing equipment, gloves, wound-care and mouth-care supplies, HIV test kits, sterile needles). Product selection procedures, distribution systems and networks, and information-management systems are needed to provide these products. Centralized procurement mechanisms, demand forecasting procedures, and coordination between supply-chain managers and program-service managers are needed to ensure patient enrollment and continual product availability. An accountable system is necessary to protect against the misuse or diversion of opioids used for pain control. The development of a supply management system with accountability is needed to increase service capacity to deliver effective care. 1.14 Reference Guide The USG has published a Clinical Guide to Supportive and Palliative Care for HIV/AIDS5 and, in collaboration with African care experts, is developing a similar clinical guide for sub-Saharan Africa. The WHO Secretariat has developed guidelines for symptom management and end of life care.6 USG, the WHO, Ministries of Health, and other academic bodies around the world have - U.S. Department of Health and Human Services (HHS), Centers for Disease Control and Prevention, Global AIDS Program. Strategies: Palliative Care. http://www.cdc.gov/nchstp/od/gap/strategies/4_3_palliative_care.htm Appendix I Pediatric Palliative Care Issues related to the delivery of HIV palliative care for pediatric clients include the following:
The Office of the U.S. Global AIDS Coordinator is finalizing the specific care package for children living with HIV/AIDS. Emergency Plan programs also need to consider the needs of the non-infected or asymptomatic child living with HIV/AIDS. These include immunizations, monitoring of growth and development, safe infant feeding, hand-washing and personal and household hygiene, and malaria prevention in endemic areas. Pain management for children also follows the principles of the WHO analgesic ladder. Nonopioids, such as paracetemol and ibuprofen, can be used, but aspirin should be avoided because of the risk of Reye's Syndrome. Because young children might not be able to complain of pain or describe its intensity, it is important to observe for signs such as listlessness, irritability, poor appetite, changes in sleep patterns, and loss of interest in play. Emergency Plan programs must ensure several important linkages to providers. OVC programs should help identify the small proportion of orphans that are HIV-positive for referral to health care. Adult home-based care programs should help identify children who are single or double orphans or whose parents are very sick, and enroll them in OVC programs. PMTCT programs need to ensure follow-up of infants and children at the community level and refer children for diagnosis and treatment and commence co-trimoxazole and infant feeding interventions. HIV/TB programs must inquire about children in the home who may have been exposed to TB (regardless of HIV status), and provide treatment or INH prophylaxis as appropriate. Emergency Plan programs must support specific provider training and other human-capacity development strategies for the expansion of pediatric palliative care. Finally, Emergency Plan programs should integrate wrap-around programs, including child health and nutrition programs that are operating at the community level, particularly in high-prevalence countries. | | | ||
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