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

Objectives The 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.

Design The work draws on data collected as part of a

realist informed study using a case study approach to

gather data.

Setting Clinical 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.

Participants This paper reports on in-depth

interviews

conducted with 21 patients at the end of life and 22

relatives/carers (n=43).

Results While 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.

Conclusion The 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.