How can the priorities of older, frail patients and their carers be used to inform policy and practice at the end of life? Insights from qualitative research across multiple settings

Abstract

ObjectivesThe paper reports on experiences from older patients and their carers of current provision of end-of-life care in England. It draws on data from a study that sought to explore the extent to which national policy for end-of-life care in England was aligned with the aspirations of stakeholders. Specifically, the study explored the balance between clinical healthcare vs social and relational care asking how this was aligned to patient priorities at this time of life. Here, we examine the extent to which the patient voice is attended to when health and social care services are delivered to older people and consider how the experiences of patients and carers could be used to improve outcomes.DesignThe work draws on data collected as part of a realist informed study using a case study approach to gather data.SettingClinical Commissioning Groups were used as the boundaries of the three case studies and within these geographical areas data was collected in hospitals, care homes, hospices and patient homes.ParticipantsThis paper reports on in-depth interviews conducted with 21 patients at the end of life and 22 relatives/carers (n=43).ResultsWhile the medical care patients received was generally praised, it was reported that relational care, particularly in respect to adult social care received at home, was fragmented and of varying quality. Relational and social support were key to the patient and carer experience yet appeared to be hard to access.ConclusionThe work highlights the misalignment between the availability of different types of care at the end of life and patient priorities. More attention should be paid to the voice of older patients and their carers, drawing on their experiences to influence the way policy is translated into practice.

Family carer experiences of hospice care at home: Qualitative findings from a mixed methods realist evaluation

“…19 Telephone interviews followed a topic guide informed by realist thinking and NPT (Supplemental Material 3), exploring carers' experience of the service and end-of-life care. Given the sensitivity of the topic, we opted for a conversational style, as others have done in realist studies, 18 allowing carers time to think around the question and focus on what they considered most important. The researchers had a comprehensive understanding of developing CMO configurations and were able to probe with sensitivity for 'nuggets' of information 19 appertaining to our developing programme theories.…”