End of Life Care in Assisted Living Facilities

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DESCRIPTION (provided by applicant): The purpose of this study is to address the absence of descriptive knowledge about end-of-life (EOL) care in the fastest growing, yet understudied, congregate residential setting for frail older adults, assisted living facilities (ALF). Nationally it is estimated that death accounts for 28% of the annual turnover in ALF residents. Increasingly, dying ALF residents are enrolled in hospice programs. Despite projections that ALFs will surpass nursing homes in occupancy within several years, and estimates that the current national population of 1 million ALF residents will double by 2020, there is limited information on EOL care and hospice involvement in ALFs. Specifically, this study will examine the perspectives of ALF staff and hospice nurses on: 1) how EOL care is provided for ALF residents and 2) facilitators and barriers to EOL care in ALFs. It addresses the National Institutes of Health initiative "Research on Care at the End-of-Life" (RFA-NR-99-004, 1/20/99) and the Institute of Medicine's call for research on EOL care that informs both how and where people die. A qualitative descriptive design will be used. Face-to-face semi-structured interviews will be conducted with a purposeful sampling of up to 36 ALF and hospice nurses in both rural and urban sites in Oregon. In addition, documents used in EOL care in ALFs will also be analyzed (e.g., flow sheets, protocols). Qualitative content analysis will include the following components: open coding of text data, constant comparative analysis of text data and documents, negative case analysis, theoretical memos, and document trails. Key characteristics of the care activities, similarities and differences in how the activities are performed, and related challenges and barriers will be identified. The end product of this study will be a detailed description of how EOL care happens for ALF residents, from the perspectives of the staffs that provide or supervise this care. The findings in combination with the PIs earlier findings from dying residents and their families will be the basis for developing and testing a model intervention aimed at improving EOL care in ALFs in a subsequent R01 study.