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 Settingscampaigns 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 ofanalgesic drugs in pain management. According to WHO, it is essential that the public be madeaware26of thepicasfollowing: 6• Palliative care will improve a patient’s quality of life, even when disease is incurable.• There is no need for patients to suffer prolonged and intolerable pain or other distressingsymptoms.• Treatments exist that can relieve pain and many other symptoms of advanced disease.• Drug therapy is vital to pain management.• Drugs for pain relief can be taken indefinitely without losing their effectiveness.• Psychological dependence (“addiction”) does not occur when morphine is taken torelieve pain.• The medical use of morphine does not lead to abuse.Public palliative care education need not be AIDS-specific. It must be delivered in a culturallysensitive manner that is accessible to every segment of the population. Media campaigns can beeffective in promoting awareness of palliative care issues, as can resource centers and overallcommunity participation in care. Where illiteracy precludes written educational materials, videoand theater are possible dissemination options. In settings where written materials are typicallyunavailable and radio is a common method of communicating information, major radiocampaigns would be appropriate. “Scribes” or literate members of volunteer groups may alsoparticipate in education efforts. 12 All arenas of public education should give special considerationto stigma reduction. Distance learning and certificate programs for volunteer caregiversin the community can further advance education efforts.STEP 3:A NATIONAL POLICY FOR DRUG AVAILABILITYA national palliative care strategy should include basic directives that focus on both thenecessary legislation and the administration process for drugs essential to the care and treatmentof 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 widerange of drugs to effectively address and control opportunistic infections and the major symptomsthat patients with HIV/AIDS report, including pain, nausea and vomiting, delirium andagitation, insomnia, fatigue, depression and anxiety. Such national policies should reflect lawsthat address the importation and distribution of needed supplies, and also determine the appropriateamount of drugs to be imported and distributed.Particular attention should be given to pain management. Numerous studies suggest that morethan 80% of HIV/AIDS patients with advanced illness have significant pain, which is currentlyboth under-assessed and under-treated. In a recent study in Uganda, hospice members foundthat pain was the first major source of distress for both cancer and AIDS patients and theirrelatives. 20 An excellent resource for the necessary legislative and administrative process forpain medications is the Guide To Opioid Availability, published in the WHO monograph CancerPain Relief. 30 This document can help governments focus attention on developing a nationalpolicy for drug availability for palliative care drugs, particularly opioids.398U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau