Living and dying: Responsibility for end of life care in care homes without on-site nursing provision - a prospective study

Melanie Jane Handley, Claire Goodman, Katherine Froggatt, Elspeth Mathie, Heather Gage, Jill Manthorpe , Stephen Barclay, Clare Crang, Steve Iliffe

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23 Citations (Scopus)
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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 ndings 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.
Original languageEnglish
Pages (from-to)22-29
JournalHealth & Social Care in the Community
Issue number1
Early online date29 May 2013
Publication statusPublished - 8 Dec 2013


  • care homes
  • end of life care
  • Older People


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