The study was funded by the Burdett Trust for Nursing and partly by Salford Primary Care Trust. A realistic evaluation design was used to collect data using a range of approaches, from before and after surveys of confidence in delivering end of life care, to participant observation and interviews. A total of 43 people were interviewed involving both staff, residents and relatives.
Key Messages
a) Significant resources are needed to engage staff, residents and relatives/carers with the idea of advance care planning b) Care home staff are optimistic about involving residents and relatives in planning care at the end of life and some relatives become very involved in care
c) Clearly registered nurses and other care home workers such as care assistants have different roles, but the overlap between these and the appropriate boundaries would benefit from further work d) Talking to residents and relatives about their feelings and wishes for care at the end of life remains especially difficult, but education and training in key skills and knowledge can engender both ability and motivation e) Care homes need strong and well-informed leadership in order to implement the Gold Standards Framework f) Placing a relative in a care home involves strain and an ability to compromise ‘there’s no perfect place’ g) Advance care planning can reduce the distress and the number of inappropriate hospital admissions, but is challenging in the face of staff rotation and out of hours medical staff being unpredictable
h) The principles of the Gold Standards Framework are widely seen as sensible, but clinical challenges include diagnosing and predicting dying trajectories,
especially in heart failure, chronic pulmonary disease and dementia i) A particular concern of staff is how to approach nutrition and hydration as frailty and death approach j) Communicating about diagnosis and especially prognosis with residents who lack capacity is an increasing problem k) Natural justice suggests that resources should be allocated to the general standardisation of a good quality of care at the end of life in ALL care homes whatever their Care Quality Commission ratin
