title: Living and dying: responsibility for end-of-life care in care homes without on-site nursing provision - a prospective study.
abstract: The aim of the study was to describe the expectations and experiences of end-of-life care of older people resident in care homes, and how care home staff and the healthcare practitioners who visited the care home interpreted their role. A mixed-method design was used. The everyday experience of 121 residents from six care homes in the East of England were tracked; 63 residents, 30 care home staff with assorted roles and 19 National Health Service staff from different disciplines were interviewed. The review of care home notes demonstrated that residents had a wide range of healthcare problems. Length of time in the care homes, functional ability or episodes of ill-health were not necessarily meaningful indicators to staff that a resident was about to die. General Practitioner and district nursing services provided a frequent but episodic service to individual residents. There were two recurring themes that affected how staff engaged with the process of advance care planning with residents; 'talking about dying' and 'integrating living and dying'. All participants stated that they were committed to providing end-of-life care and supporting residents to die in the care home, if wanted. However, the process was complicated by an ongoing lack of clarity about roles and responsibilities in providing end-of-life care, doubts from care home and primary healthcare staff about their capacity to work together when residents' trajectories to death were unclear. The findings suggest that to support this population, there is a need for a pattern of working between health and care staff that can encourage review and discussion between multiple participants over sustained periods of time.
authors.affiliation: Centre for Research in Primary and Community Care, University of Hertfordshire, Hatfield, UK.
authors.forename: Melanie
authors.initials: M
authors.lastname: Handley
authors.forename: Claire
authors.initials: C
authors.lastname: Goodman
authors.forename: Katherine
authors.initials: K
authors.lastname: Froggatt
authors.forename: Elspeth
authors.initials: E
authors.lastname: Mathie
authors.forename: Heather
authors.initials: H
authors.lastname: Gage
authors.forename: Jill
authors.initials: J
authors.lastname: Manthorpe
authors.forename: Stephen
authors.initials: S
authors.lastname: Barclay
authors.forename: Clare
authors.initials: C
authors.lastname: Crang
authors.forename: Steve
authors.initials: S
authors.lastname: Iliffe
mesh_terms: D032722:Advance Care Planning; D000368:Aged; D000369:Aged, 80 and over; D001291:Attitude of Health Personnel; D004739:England; D005260:Female; D006801:Humans; D008297:Male; D008503:Medical Staff / Q000523:psychology; D008875:Middle Aged; D009735:Nursing Homes; D024382:Professional Role; D011369:Professional-Patient Relations; D011446:Prospective Studies; D036301:Qualitative Research; D013727:Terminal Care
keywords: General Practitioners; advance care planning; care home staff; district nurses; dying; end-of-life care; residential care homes