Older adults with advanced chronic illness and emergency department care: the hermeneutic stories of Bill, Edie and Nicole

BACKGROUND: Older adults are living longer, often with multiple health conditions including frailty, and seek care in the Emergency Department (ED) proportionately more than younger adults. Increasing demand for care requires adaptation of service models across the health system as well as strategies within the ED itself. The lived experience of older adults with advanced chronic illnesses and/or frailty accessing EDs is little understood. We aimed to illuminate these experiences to identify areas for care improvement. METHODS: One local health district (population > 1 million) in Sydney, Australia. Qualitative interviews with older adults (≥ 65 years), who were receiving support in the community or who were residents of care homes and had attended one of three EDs in the previous 12 months, or their informal carers. Hermeneutic phenomenology was used to analyse the data and present findings within the context of human life rather than the boundedness of the ED. RESULTS: Twelve interviews were conducted: seven older adults, three carers, and two older adult and carer dyads. The hermeneutic stories of Bill and Edie, constructed from collective older adult interviews, illustrate how older adults with increasing dependence on the care of others eventually acquiesce to a system that is fragmented, inflexible, and population- and process-focussed, rather than person-oriented. Nicole's story illustrates carer distress in seeing older adults as passive recipients of care, and frustration in not being able to adequately represent them. CONCLUSIONS: The ED becomes a principal provider of care for older adults with advanced chronic illnesses and frailty when they are at their most weak. Narratives of acquiescence, where older adults yield to authority or pressure or limit their agency as a choice, are a novel finding in health services research, Earlier identification of advancing illness, connection with support services, sensitivity to the changing preferences of older adults, and design for older adults' needs in ED must be supported by aligned policy and resources that strengthen community care and promote continuity in life.