Geographic distribution of hospice, homecare, and nursing home facilities and access to end-of-life care among persons living with HIV/AIDS in Appalachia

BACKGROUND: Access to healthcare services, from diagnosis through end of life (EOL), is important among persons living with Human Immunodeficiency Syndrome (HIV) and Acquired Immunodeficiency Syndrome (AIDS) (PLWHA). However, little is known about the availability of hospice services in Appalachian areas. Therefore, the objective of this study is to describe the geographic distribution of hospice, homecare and nursing home facilities in order to demonstrate current existence of and access to resources for EOL care among PLWHA in the Appalachian regions of Tennessee and Alabama. METHODS: This paper reports on the second aim of a larger sequential, mixed methods qualitative-quantitative (qual→quan) study. Data from advance care planning (ACP) surveys were collected by both electronic (n = 28) and paper copies (n = 201) and, among other things, obtained information on zip codes of residence of PLWHA. This enabled assessment of the geographic distribution of residences of PLWHA in relation to the distribution of healthcare services such as hospice and home healthcare services. Hospice and Home Healthcare data were obtained from the Tennessee and Alabama Departments of Health. The street addresses of these facilities were used to geocode and map the geographic distributions of the facilities using Street Map USA. Travel times to Hospice and Home Healthcare facilities were computed and mapped using ArcGIS 10.3. RESULTS: We identified a total of 32 hospice and 69 home healthcare facilities in the Tennessee Appalachian region, while the Alabama Appalachian region had a total of 110 hospice and 86 home healthcare facilities. Most care facilities were located in urban centers. The distribution of care facilities was worse in Tennessee with many counties having no facilities, requiring up to an hour drive time to reach patients. A total of 86% of the PLWHA indicated preference to die at home. CONCLUSIONS: Persons living with HIV/AIDS in Appalachia face a number of challenges at the end of life that make access to EOL services difficult. Although respondents indicated a preference to die at home, the hospice/homecare infrastructure and resources are overwhelmingly inadequate to meet this need. There is need to improve access to EOL care in the Appalachian regions of both Tennessee and Alabama although the need is greater in Tennessee.