What is the quality of care at the end of life? Qualitative findings from a nationally-representative post-bereavement survey across England and Wales.

ObjectivesTo explore the quality of end-of-life care in England and Wales using the experiences of bereaved family carers, and to develop person-centred quality of care domains for end-of-life care.MethodsQualitative analysis of free-text responses from a nationally-representative cross-sectional post-bereavement survey. Inductive thematic analysis of free-text responses to open-ended questions about care in last 3 months of life, circumstances of death, and experiences of care and bereavement, guided by the Institute of Medicine's quality domains. Participants were adults who registered the death of an adult relative in England and Wales between August and December 2022, identified using mortality data and stratified sampling (by age, gender, cause of death, place of death and geographical area).ResultsOf 1194 respondents, 1083 (90.7%) gave at least one free-text response. Six themes about quality of end-of-life care were identified: (1) accessing care; (2) timely and coordinated care; (3) individualised care; (4) the nature of communication and care; (5) family-centred care and support; and (6) safe and equitable care. Difficulty accessing care, challenges navigating a complex system, and poorly-coordinated care were interpreted as leading to a lack of physical and psychological safety. Timeliness of care was considered paramount but often not achieved. How care was provided was as important as what was provided: empathic relational care (in contrast to transactional, task-based care) led to dying people and their families reporting feeling reassured, supported and safe.ConclusionsWe identify aspects of quality important for care which are currently not always achieved, and provide a refined model of the quality of end-of-life care to guide policy and research.