After the Liverpool Care Pathway--development of heuristics to guide end of life care for people with dementia: protocol of the ALCP study.
BACKGROUND
End of life care guidance for people with dementia is lacking and this has been made more problematic in England with the removal of one of the main end of life care guidelines which offered some structure, the Liverpool Care Pathway. This guidance gap may be eased with the development of heuristics (rules of thumb) which offer a fast and frugal form of decision-making.


OBJECTIVE
To develop a toolkit of heuristics (rules of thumb) for practitioners to use when caring for people with dementia at the end of life.


METHODS
A mixed-method study using a co-design approach to develop heuristics in three phases. In phase 1, we will conduct at least six focus groups with family carers, health and social care practitioners from both hospital and community care services, using the 'think-aloud' method to understand decision-making processes and to develop a set of heuristics. The focus group topic guide will be developed from the findings of a previous study of 46 interviews of family carers about quality end-of-life care for people with dementia and a review of the literature. A multidisciplinary development team of health and social care practitioners will synthesise the findings from the focus groups to devise and refine a toolkit of heuristics. Phase 2 will test the use of heuristics in practice in five sites: one general practice, one community nursing team, one hospital ward and two palliative care teams working in the community. Phase 3 will evaluate and further refine the toolkit of heuristics through group interviews, online questionnaires and semistructured interviews.


BACKGROUND
This study has received ethical approval from a local NHS research ethics committee (Rec ref: 15/LO/0156). The findings of this study will be presented in peer-reviewed publications and national and international conferences.
Research Department of Primary Care & Population Health, UCL, London, UK.
N
N
Davies
Social Care Workforce Research Unit, Kings College London, London, UK.
J
J
Manthorpe
Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK Barnet Enfield and Haringey Mental Health Trust Liaison Team, North Middlesex University Hospital, London, UK.
E L
EL
Sampson
Research Department of Primary Care & Population Health, UCL, London, UK.
S
S
Iliffe
D017028:Caregivers; D002985:Clinical Protocols; D003657:Decision Making; D003704:Dementia / Q000150:complications; D017144:Focus Groups; D000066506:Heuristics; D006801:Humans; D010166:Palliative Care; D017410:Practice Guidelines as Topic; D012107:Research Design; D011795:Surveys and Questionnaires; D013727:Terminal Care
PALLIATIVE CARE; decision making; end of life care; heuristic