The Clinical Guide to Supportive and Palliative Care for HIV/AIDS

A Clinical Guide to Supportive and Palliative Care for HIV/AIDS • Chapter 19: Palliative Care in Resource-Poor SettingsDefining Palliative CareThe World Health Organization (WHO) initially defined the term “palliative care” in connectionwith26itspicasinitiatives to develop National Cancer Control Programs. 6 According to WHO:Palliative care is the active total care of patients whose disease is not responsive tocurative treatment. Control of pain, of other symptoms, and of psychological, socialand spiritual problems is paramount. The goal of palliative care is the achievementof the best possible quality of life for patients and their families. Many aspectsof palliative care are applicable earlier in the course of the illness, in conjunctionwith [other] treatment. Palliative care:• Affirms life and regards dying as a normal process• Neither hastens nor postpones death• Provides relief from pain and other distressing symptoms• Integrates the psychological and spiritual aspects of patient care• Offers a support system to help patients live as actively as possible until death• Offers a support system to help the family cope during the patient’s illness andin their own bereavementWHO recently updated this definition to reflect the full scope of palliative care, defining it as “anapproach which improves quality of life of patients and their families facing life-threateningillness through the prevention and relief of suffering by means of early identification andimpeccable assessment and treatment of pain and other problems, physical, psychosocial andspiritual.” 7In 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 “asan Essential Activity for Care and Support.” 8 These two UN agencies and the U.S. Agency forInternational Development (USAID), the development agency of the United States, conceptualizepalliative 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 theframework of integrated community- and home-based care.Palliative Care Services in Industrialized and Developing CountriesPalliative care services need to be integrated and balanced with other care services to addressthe needs of patients and their families. Symptom control and supportive therapies arenecessary throughout a patient’s illness, although the proportion of palliative care services varieswith 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 seektreatment when they are already in a far advanced stage of disease, palliative care may be themajor 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, palliativecare 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 their388U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau