title: "This is our last stop": Negotiating end-of-life transitions in assisted living.
abstract: Where people die has important implications for end-of-life (EOL) care. Assisted living (AL) increasingly is becoming a site of EOL care and a place where people die. AL residents are moving in older and sicker and with more complex care needs, yet AL remains largely a non-medical care setting that subscribes to a social rather than medical model of care. The aims of this paper are to add to the limited knowledge of how EOL is perceived, experienced, and managed in AL and to learn how individual, facility, and community factors influence these perceptions and experiences. Using qualitative methods and a grounded theory approach to study eight diverse AL settings, we present a preliminary model for how EOL care transitions are negotiated in AL that depicts the range of multilevel intersecting factors that shape EOL processes and events in AL. Facilities developed what we refer to as an EOL presence, which varied across and within settings depending on multiple influences, including, notably, the dying trajectories and care arrangements of residents at EOL, the prevalence of death and dying in a facility, and the attitudes and responses of individuals and facilities toward EOL processes and events, including how deaths were communicated and formally acknowledged and the impact of death and dying on the residents and staff. Our findings indicate that in the majority of cases, EOL care must be supported by collaborative arrangements of care partners and that hospice care is a critical component.
authors.affiliation: Division of General Medicine and Geriatrics, Emory University School of Medicine, Atlanta, GA, United States. Electronic address: mary.ball@emory.edu.
authors.forename: Mary M
authors.initials: MM
authors.lastname: Ball
authors.affiliation: The Gerontology Institute, Georgia State University, Atlanta, GA, United States. Electronic address: ckemp@gsu.edu.
authors.forename: Candace L
authors.initials: CL
authors.lastname: Kemp
authors.affiliation: The Gerontology Institute, Georgia State University, Atlanta, GA, United States. Electronic address: carolehollingsworth@gsu.edu.
authors.forename: Carole
authors.initials: C
authors.lastname: Hollingsworth
authors.affiliation: Division of General Medicine and Geriatrics, Emory University School of Medicine, Atlanta, GA, United States; Atlanta Site, Birmingham/Atlanta Geriatric, Research, Education and Clinical Center (GRECC), Atlanta, GA, United States; Atlanta VA Medical Center, Atlanta, GA, United States. Electronic address: molly.m.perkins@emory.edu.
authors.forename: Molly M
authors.initials: MM
authors.lastname: Perkins
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D040561:Assisted Living Facilities / Q000458:organization & administration*; D001291:Attitude of Health Personnel; D001293:Attitude to Death; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D017008:Negotiating / Q000379:methods*; D036301:Qualitative Research; D011787:Quality of Health Care; D013727:Terminal Care / Q000458:organization & administration*
keywords: Assisted living; Death and dying; Dying trajectory; End-of-life care; Hospice care