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

Chapter 22.Facilitating the Transition toHome-Based and Hospice CareHarlee S Kutzen, MN, ACRNINTRODUCTION■ The focus of this chapter is planning for and facilitating the transition from curative to palliativecare, with emphasis on the initiation of either home-based support services or institutionalcare. The interdisciplinary team approach is described. Strategies for promoting patient, family,and staff education and support will be identified and institutional issues that facilitate or hinderprovision of effective palliative care are explored.The primary goals of palliative care are to maximize the patient’s sense of control, strengthenrelationships with loved ones and limit care burdens. 1,2,3 The importance of access to appropriateservices in the successful delivery of palliative care to the chronically or terminally ill personwith HIV cannot be overestimated. Knowledge of community resources such as government assistanceprograms, housing, personal finance, disability benefits, transportation, procurementof durable medical equipment, case management, food and shelter and emergency assistance isessential for helping the patient and family deal with the social sequelae of illness, disability,and death.HIV is not just another terminal illness. If the same “too young” person presented with an equallylife-threatening diagnosis of leukemia, health care teams would probably call family and friendsfor support. In contrast, people with HIV often choose to keep their diagnosis a secret. 4 As longas fear and discrimination exist, agencies may be reluctant to accept people living with HIV/AIDS. Stigma associated with HIV and, hence, disclosure of HIV status continue to be significantproblems complicating care.THE INTERDISCIPLINARY TEAM■ Palliative care, by definition, is provided by an interdisciplinary team that, in addition to thephysician, nurse (including nurse practitioners and nurses), social worker, nutritionist, chaplain,and other professionals, includes the patient, family, caregivers and other individuals importantto the patient. The interdisciplinary team is a group of individuals working togetherwith a common purpose for the greater good of the patient with advanced disease and his or herfamily. 5 The goal of the interdisciplinary team is to provide the patient and family with a frameworkof emotional, physical, spiritual, and social support during the time of advanced disease. 6In the United States, the nurse, social worker or case manager often has the primary responsibilityfor the practical issues discussed in this chapter. It is important, however, that all individualsinvolved in the care of a person with advanced HIV disease be aware of these issues andbe prepared to take the necessary steps to address patient and family needs related to facilitatingthe transition to palliative care.While each member of the team has particular expertise, all share responsibility for advocacy,enabling, support, truthfulness, and mediation such that crises are prevented, priorities of theXXIIU.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 447