Given the demographic imperative of a rapidly aging population, a major challenge of the 21st century will be the growing prevalence of older adults who die from old age, most within the context of advanced chronic illness. Increasing numbers of these older adults will receive care and die in assisted living (AL), currently the fastest growing long-term care (LTC) option. The proposed five-year prospective qualitative study will investigate end-of-life (EOL) care in AL from the perspective of multiple stakeholders (residents, AL staff, informal caregivers, and external care providers, e.g., hospice workers). We will use a multifaceted multilevel conceptual framework and draw upon salient aspects of social ecological theory, Donabedian's structure- process-outcome (SPO) quality-of-care paradigm, relational theory, as well as domains of quality adapted from The National Consensus Project (NCP) Guidelines for Quality Palliative Care. The overall goal of the proposed research is to address critical knowledge gaps and identify best practices for EOL care in AL. The three specific aims are: (1) understand how EOL is defined and experienced by AL residents and other key stakeholders; (2) investigate the structure and process of formal and informal care in AL and understand the interface between these care components and how they shape outcomes; and (3) identify the contexts and conditions within which structures and processes of care are shaped and understand the combined impact these aspects of care have on stakeholders' overall EOL experience. Increasingly, LTC scholars and policy-makers are calling for a broader definition of EOL that encompasses different EOL transitions, including dying as a phase of advanced chronic illness that may extend for years, as well as dying at the end of old age. In order to provide adequate support services and timely palliative care, it is important to acknowledge and identify these varying and often ambiguous EOL trajectories. Following the Institute of Medicine, we define the EOL experience broadly to include periods of decline associated with advanced age or chronic illness where the timing of death is uncertain. To investigate the EOL process as it unfolds over time, we will use grounded theory methods to study eight diverse AL settings in Georgia that vary according to size (6-15 beds; 16-24 beds; 25-50 beds; and 51+ beds), resident and staff profile, rural/urban location, ownership, licensing status, and resources. The study will include low-income, rural, and racial/ethnic minority residents, groups typically excluded from AL research, as well as residents living in dementia units. Data collection in each home will extend over two years and include: 271 in-depth interviews, informal interviewing, review of focal residents' social and health records, and participant observation. The proposed study will identify modifiable factors associated with adverse EOL experiences and potential disparities in care that can be targets of intervention at multiple ecological levels and contribute to ongoing efforts to transform and improve the quality of EOL care for older adults in LTC and other care settings.

Public Health Relevance

The proposed five-year prospective qualitative study investigates end-of- life (EOL) care in Georgia assisted living (AL) facilities. Such research is crucial given the growing use of AL, the increasing frailty and diversity of the AL population, and the rising number of deaths reported in AL each year. This study, which is the first to date to focus on EOL care in AL in depth, will offer valuable insights to researchers, policy-makers, and service providers.

National Institute of Health (NIH)
National Institute on Aging (NIA)
Research Project (R01)
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Community Influences on Health Behavior (CIHB)
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Haaga, John G
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Emory University
Internal Medicine/Medicine
Schools of Medicine
United States
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Vandenberg, Ann E; Ball, Mary M; Kemp, Candace L et al. (2018) Contours of ""here"": Phenomenology of space for assisted living residents approaching end of life. J Aging Stud 47:72-83