Preferences and end of life care for residents of aged care facilities: a mixed methods study

• Published in: BMC palliative care Vol. 22; no. 1; pp. 1 - 124
• Main Authors: Sarah, Moberley, Jacqui, Hewitt, John, Attia, Janean, Cole, Joelle, Bevington, Christopher, Oldmeadow, Zach, Howard, Rachel, Hughes
• Format: Journal Article
• Language: English
• Published: London BioMed Central Ltd 01.09.2023; BioMed Central; BMC
• Subjects: Advance care planning; Death & dying; Dementia; Elder care; Evaluation; Hospice care; Management; Medical care; Medical records; Mixed methods research; Nurse practitioners; Nursing; Nursing Home Care; Palliative care; Preferences; Professional relationships; Quality management; Residential care facilities; Symptoms and Symptom Management; Terminal Care; Australia
• ISSN: 1472-684X; 1472-684X
• DOI: 10.1186/s12904-023-01239-9

Abstract Background Residential aged care facilities is one of the most common places to deliver of end of life care. A lack of evidence regarding preferred place for end of life care for residents of aged care facilities impacts on delivery of care and prevents assessment of quality of care. This paper reports the preferences, current status of end of life care and enablers and barriers of care being delivered in line with the wishes of residents of participating aged care facilities. Methods We collaborated with six equally sized aged care facilities from the Greater Newcastle area, New South Wales, Australia. An audit of the quality of end of life care for residents was conducted by retrospective medical record review (n = 234 deceased patients). A retrospective review of emergency department transfers was conducted to determine the rate of transfer and assign avoidable or not. Qualitative focus group and individual interviews were conducted and analysed for barriers and enablers to end of life care being delivered in accordance with residents’ wishes. Results Most residents (96.7%) wished to remain in their residential aged care facility if their health deteriorated in an expected way. Residents of facilities whose model of care integrated nurse practitioners had the lowest rates of emergency department transfers and timelier symptom management at end of life. Family decision making influenced location of death (either supporting or preventing care in place of patient preference). Conclusion(s) To better provide care in accordance with a person’s wishes, aged care facilities need to be supported to enable end of life care insitu through integrated care with relevant palliative care providers, education and communication strategies. Family and community health and death literacy interventions should accompany clinical innovation to ensure delivery of care in accordance with residents’ preferences.