Experiences, barriers and enablers of stroke end-of-life care: a systematic review with mixed-methods synthesis

Abstract Background Despite advances in stroke care, 12% of patients die within 30 days of stroke highlighting the requirement for high-quality end-of-life care (EoLC) within stroke services. EoLC aims to improve the quality-of-life of patients facing death whilst also supporting their families. EoLC after stroke can be difficult due to complex stroke-specific challenges and little clinical guidance. There is a lack of knowledge and understanding of current provision of poststroke EoLC and the barriers and enablers to quality EoLC. Therefore, the aim of this review was to identify the experiences, expectations, information needs and communication preferences of staff, patients and their families and loved ones regarding hospital-based EoLC after stroke. Methods A systematic review and synthesis of research published between 2007–2023, updating and extending the 2007 review by Stevens et al. [1]. Eligibility: primary research studies; reporting the views and experiences of staff, patients and/or their families; EoLC provided to adult hospital patients with ischaemic stroke or primary intracerebral haemorrhage; EoLC provided within 30-days post-stroke; qualitative, mixed method and quantitative studies; published in English from 2007 onwards. MEDLINE, CINAHL, PsycINFO, Cochrane and EMBASE databases were searched up to November 2023. Results A total of 28 studies were included. Most were conducted in high-income countries, predominately within hospital based services in Europe ( n = 19) and North America ( n = 7). Two studies were conducted in middle-income countries and none in low-income countries. Three studies used mixed methods; 13 qualitative, and 12 quantitative. Most data were from healthcare staff ( n = 708), four studies included patients’ ( n = 367) views and experiences and nine studies included n = 251 next-of-kin. Data synthesis identified three themes describing the barriers and enablers to the delivery of effective EoLC, which can be used to support improvements in practice: 1. recognising dying within the context of uncertainty; 2. navigating relationships between staff and families; and 3. the lived experience of the stroke unit environment . Conclusions Stroke unit EoLC is shaped by interconnected dimensions of recognising dying, prognostic uncertainty, and the culture and environment of care delivery. Limited progress in research since 2007, particularly in relation to patient-reported experiences and intervention development, underscores the need for renewed research focus to inform best practice and enhance support for patients and families. Trial registration PROSPERO [CRD42020212895].