The lived experiences of people dying with frailty: a systematic review and thematic synthesis of qualitative studies exploring patients, relatives and professionals views
Authors: Westhead Elizabeth , Stow Daniel , Bareham Bethany Kate , Dewhurst Felicity , Spiers Gemma , Robinson Lucy , O’Keefe Hannah , Matthews Fiona E , Hanratty Barbara 
Published: October 2024

ABSTRACTBackgroundUnderstanding the lived experiences of people dying with frailty is essential to develop models of care that are appropriate to meet the needs of this growing population.AimSynthesise qualitative evidence on the experiences of people dying with frailty.DesignSystematic review of qualitative literature and thematic synthesis. PROSPERO registration CRD42019141907.Data sourcesFourteen electronic databases (CINAHL, Cochrane, Embase, EThOS, Google, Medline, NDLTD, NHS Evidence, NICE, Open grey, Psychinfo, SCIE, SCOPUS and Web of Science) searched from inception to May 2024. Studies were included if they reported on the lived experiences of people dying with frailty, and used an explicit measure of frailty for their sample. Quality was appraised using the Saini and Schlonsky checklist.ResultsOf 6,340 unique articles, 19 met inclusion criteria, describing the views of 138 people dying with frailty, 186 relatives /informal carers, and 240 professional caregivers. We identified three themes: ‘Identifying with frailty and dying’, ‘Emotional needs’, and ‘Support with daily living’. There was wide variation in people’s understanding of frailty, and of their proximity to death. Emotional responses to physical symptoms often had a greater impact on lived experiences than the symptoms themselves. People frequently reported a desire to live in the present, with priorities focused more on living than dying.ConclusionApproaches to palliative care for people dying with frailty should address emotional, as well as physical needs, and facilitate maintenance of existing daily routines. Ensuring that care planning accounts for individual understandings of frailty, and prognostic uncertainty may be particularly helpful.What is already known about the topic?Health and social care professionals and policy makers recognise the need to improve equity in palliative care provision for people dying with frailtyA previous systematic review of quantitative literature highlighted the diverse range of physical, psychological and social needs of people dying with frailtyWhat this paper adds?The narratives of people dying with frailty often focus on the emotional impact of physical symptoms, and fears around uncertaintyPeople do not always recognise or identify with the concept of ‘frailty’, and unless actively dying, often express the desire to be supported to live independently for as long as possibleCare providers express the need for holistic care, and voice frustration at service failures, including lack of time and personnelImplications for practice, theory or policyServices for people dying with frailty should be configured to be collaborative, flexible, holistic and responsive to changing needsClinical training should emphasise the importance of monitoring patient needs, and both understanding and communicating uncertainty and unclear prognosesFuture work and funding must now concentrate on developing and evaluating appropriate models of care