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

A Clinical Guide to Supportive and Palliative Care for HIV/AIDS • Chapter 22: Facilitating the Transitiontification of ongoing care needs, and ongoing education of patients and families. Hospital nursesteach the patient and family throughout the hospital stay and confirm patient and family knowledgeprior to discharge in order to enhance comfort, safety, and competence in care at home.Nurses often have the most frequent contact with the patient and family in the inpatient setting,outpatient clinic or at home. It is the nurse’s responsibility to assist the patient in coping withthe effects of advancing HIV disease. This includes attention to some of the most personal andintimate aspects of physical care: pain and symptom assessment and management, personalcare such as bathing, control of odor, care of pressure areas, mouth care, bowel and bladdercare, as well as patient and family education on anticipated care needs. Nurses also assess thepatient’s and family’s level of knowledge of disease, symptom management, comfort care, andability to differentiate emergencies from normally anticipated events, and develop a plan forchanges in patient status and emergencies.As patient advocates, nurses help ensure, in collaboration with social workers, that the wishesof the patient are met, enabling the dying person and the family to remain involved in keydecisions.Clinical Liaison NursesClinical liaison nurses promote up-to-date communication between providers in the outpatientsetting and those in the inpatient unit, particularly for patients who are homebound andrequire home-based care services. Generally, the nurse’s role is to supervise and monitor concurrentcensuses of active patients receiving home care and hospice care services. Specificresponsibilities may include the following:• Monitoring for timely response from home care and hospice agencies forpatient care coordination• Tracking home care and hospice agency paperwork and medical orders tomake sure the medical provider has access to the most current orders• Making sure the agency has appropriate medical signaturesA clinical liaison nurse’s activities also may include daily contact with home-based care supervisorsand field staff regarding changes in patient status, streamlining of medication refills, verificationof minor orders, and facilitation of urgent appointments. Because the care needs canchange quickly, the liaison nurse provides troubleshooting for equipment approvals, special serviceapprovals with HIV/AIDS programs, and contact of care providers. Updating interdisciplinaryteam members on the complex issues at home for each patient is an important role ofclinical liaison nurses in support of the continuum of palliative care.Social WorkersThe goal of social work in palliative care is to help the patient and family deal with the personaland social problems of illness, disability, and impending death, and to provide survivor skillbuildingand support. Social workers assess many important areas of need for both patient andfamily, and help the family develop realistic plans for the present as well as the future. Thestrengths and challenges of each family unit are assessed and referrals made to availableresources.XXIIU.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 449