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 and operational documents on carers and EOLC to examine the extent to which policy addresses carer assessment and support and its implementation in practice.
Methods Policy documents are not indexed by databases such as Medline preventing a conventional literature review. Instead a scoping review was conducted using searches of public body websites (e.g. Department of Health and NICE; provider organisations (e.g. National Council for Palliative Care, Hospice UK); charities (e.g. Carers UK, Carers Trust), personal resources (researcher libraries, personal contacts, serendipitous discovery) and ‘snowballing’ and reference checking. Included: publications 2004–2018, national guidance on EOLC delivery, or adult carers. Excluded: policy/guidance on children. Policy content was mapped to areas key to 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: 1) 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; 2) Limiting carer assessment to statutory social-care assessments which do not address need for healthcare support; 3) Lack of detail on structures and processes required for organisational implementation of carer assessment and support.
Conclusions This scoping review has highlighted an absence of policy detail about carer identification, assessment and support in EOLC and the structures and processes required for its implementation in practice. These issues need to be fully addressed in order to support carers in their crucial role in EOLC.
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