Title: CAPE study. Community cAre Pathways at the End of life: mapping the pathways to improve care.
Funder: Department of Health (England)

Abstract: Background Half a million people die in England each year, 35% under the care of GPs. Some receive excellent care from GPs and District Nurses (DNs): many do not: raising the standard of care for all remains a major challenge. Most people approaching the end of life express a preference to die at home, but this is very dependent on adequate support being available. Identification of those for whom home care is more or less likely to be successful would enable a focus on optimising care for all, whatever their place of death. We address the recognised knowledge gaps of measurement of patient experience, economics of care and the adequacy of current pathways of care in meeting the range of patient care needs in the first detailed UK study of Primary Care provision of End of Life Care (EOLC). Aims The research question is: for whom is home death “good”? Is it possible to characterise: a) Those for whom a “good death” at home is achievable, for whom greater effort is needed to optimise home care b) Those for whom death a “good death” at home is rarely achieved, for whom inpatient care should be planned and optimised? The aims are: 1) To characterise the patterns of care need of people approaching the end of life in the community 2) To map their current pathways of care provision and place of death 3) To clarify and validate these patterns of need and care pathways with carers, GPs and DNs 4) To investigate the health costs of these pathways 5) To develop a toolkit for Primary Care Teams to review care and better align patient needs to care provision Plan of Investigation A diverse group of 20 practices in Cambridgeshire and Peterborough will be recruited. Phase 1: case summaries of 20 deceased patients, validated by GP and DN, will document care in the last six months of life, with health economic analysis of care pathways. Phase 2: focus group discussions with GPs and DNs reviewing five recent deaths, investigating perspectives on care given and pathways identified. Phase 3 (10 practices): interviews with informal carer, GP and DN of deceased patients (1 cancer, 1 non-cancer), triangulating carer and professional views of care. Phase 4: development of toolkit for practitioner care review: carer feedback questionnaire, guidelines for practice death reviews and templates for clinical records. Potential Impact Characterisation of patterns of care need and pathways of care provision will identify patient groups for whom “a good death” at home is more or less achievable, with health economic analysis of the care pathways identified. This addition to knowledge will enable practitioners, service providers and commissioners to tailor care to patients’ needs, with optimum use of resources, whatever the place of death. The toolkit will enable practitioners to optimise their care of people near the end of life by receiving carer feedback, developing practice after-death case reviews and using records to review care. The research team’s connections with the developing NHS EOLC Strategy and national charities such as Macmillan and Marie Curie will maximise the national impact of the study.


Research activity codes: 7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE