Background The ethos of end-of-life-care (EOLC) embraces both carers and patients. For over a decade UK healthcare policy has acknowledged that carers’ needs should be assessed and addressed in EOLC.
Aim To review national policy/guidelines on carers and EOLC examine how policy addresses carer assessment/support and its implementation in practice.
Methods Scoping review through searches of public body websites (e.g., Department of Health and NICE); provider organisations (e.g., National Council for Palliative Care Hospice UK) and charities (e.g., Carers UK Carers Trust) personal sources (researcher libraries personal contacts serendipitous discovery) ‘snowballing’ and reference checking. Included: publications 2004–2018 national guidance on EOLC delivery or adult carers. Excluded: policy/guidance on children. Policy content mapped to areas key of practice implementation for carers at individual and organisation levels.
Results Content mapping identified EOLC practice implementation issues for patients rarely for carers. Conversely generic carer strategy/guidance focused on carers with little reference to EOLC. Key findings were:
Move from a distinct carer focus (their assessment/support) in early guidance to a joint patient/carer approach with corresponding loss of recognition of carers’ separate situation
Limiting carer assessment to statutory social–care assessments which do not address need for healthcare support
Lack of detail on structures and processes required for organisational implementation of carer assessment and support.
Policy guidance lacks a focus on carers a comprehensive health and social care approach and detail on processes and structures required for implementation of carer assessment and support in practice that hinders improvement of carer support.
Funder Hospice UK and NIHR CLARHC Greater Manchester
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