“I’d rather wait and see what’s around the corner”: A multi-perspective qualitative study of treatment escalation planning in frailty

• Published in: PloS one Vol. 18; no. 9; p. e0291984
• Main Authors: Lound, Adam, Bruton, Jane, Jones, Kathryn, Shah, Nira, Williams, Barry, Gross, Jamie, Post, Benjamin, Day, Sophie, Brett, Stephen J, Ward, Helen
• Format: Journal Article
• Language: English
• Published: San Francisco Public Library of Science 21-09-2023; Public Library of Science (PLoS)
• Subjects: Aversion; Biology and Life Sciences; Care and treatment; Caregivers; Chronic fatigue syndrome; Chronic illnesses; COVID-19; Decision analysis; Decision making; Emergency medical care; Focus groups; Frail elderly; Frailty; Health aspects; Interviews; Medicine and Health Sciences; Mortality; Patients; People and Places; Planning; Public participation; Qualitative research; Risk aversion; Social Sciences; United Kingdom; United Kingdom > UK
• ISSN: 1932-6203; 1932-6203
• DOI: 10.1371/journal.pone.0291984

People living with frailty risk adverse outcomes following even minor illnesses. Admission to hospital or the intensive care unit is associated with potentially burdensome interventions and poor outcomes. Decision-making during an emergency is fraught with complexity and potential for conflict between patients, carers and clinicians. Advance care planning is a process of shared decision-making which aims to ensure patients are treated in line with their wishes. However, planning for future care is challenging and those living with frailty are rarely given the opportunity to discuss their preferences. The aim of the ProsPECT (Prospective Planning for Escalation of Care and Treatment) study was to explore perspectives on planning for treatment escalation in the context of frailty. We spoke to people living with frailty, their carers and clinicians across primary and secondary care. In-depth online or telephone interviews and online focus groups. The topic guide explored frailty, acute decision-making and planning for the future. Data were thematically analysed using the Framework Method. Preliminary findings were presented to a sample of study participants for feedback in two online workshops. We spoke to 44 participants (9 patients, 11 carers and 24 clinicians). Four main themes were identified: frailty is absent from treatment escalation discussions, planning for an uncertain future, escalation in an acute crisis is 'the path of least resistance', and approaches to facilitating treatment escalation planning in frailty. Barriers to treatment escalation planning include a lack of shared understanding of frailty and uncertainty about the future. Emergency decision-making is focussed on survival or risk aversion and patient preferences are rarely considered. To improve planning discussions, we recommend frailty training for non-specialist clinicians, multi-disciplinary support, collaborative working between patients, carers and clinicians as well as broader public engagement.