International Observatory on End of Life Care
Experiences of Older People in Residential Care
Homes (The EPOCH Study):
Mapping the living-dying transition
[i]
Froggatt ,
[ii]
Goodman ,
[ii]
Mathie ,
[ii]
Wright ,
Katherine
Claire
Elspeth
Jayne
Clare
[iii]
[ii]
[iv]
[iv]
[iv]
Crang , Di Thompson , Alex Mendoza ,Daphne Westwood , Marion Cowe ,
Stephen Barclay[iii], Steve Iliffe[v], Jill Manthorpe[vi]
Background
Many older people live in a care home. Dying is a part of
care home life and an important aspect of the overall
quality of care provided. Recent initiatives in England seek
to improve access to palliative care provision, and the
quality of care for residents towards the end of life. How
individuals experience and engage with this living
and dying transition in a care home over time has
received little attention.
Methods
This study draws on the principles of complex evaluation
(Campbell et al 2007) using qualitative and quantitative
Evidence. A range of data collection methods have been
used (Figure 1).
Figure 1: Planned data collection methods
Research Aims
• To understand how the care home environment
influences the views, experiences and expectations of
end of life care in care homes for residents.
• To identify the treatments and interventions received
and services and resources used leading up to
the older person’s death
•To establish what kind of palliative care support is
required to ensure older people, relatives and care
home staff achieve good end of life outcomes
Review of data collection:
Six care homes have participated and
the following data collection completed
to date:
Interviews with:
- 59 older people (+33 second
interviews)
- 27 staff
A case note review for 116 residents
Fieldnotes completed following site
visits
Findings(1) Individual experiences
All residents, even people living
with dementia were able to recount
their experiences of living and loss in
this setting. Present within older
people’s experiences and views of
living in a care home are accounts of
losses, and to a lesser extent
dying. Inherent in these accounts are
mixed threads of satisfaction and
dissatisfaction with care. This mirrors
the acceptance of personal dying and
ambivalence about discussions of this
topic.
For further information contact:
Katherine Froggatt: k.froggatt@lancaster.ac.uk or
Claire Goodman: c.goodman@herts.ac.uk.
Findings (2) Wider structural issues
The cultural context on a number
of dimensions has the potential to shape
older people’s quality of care towards the
end of life. These dimensions can be
strong or weakly present and include:
Transparency and openness about
dying and death within the care home
amongst staff and with residents and their
families. This is illustrated by the extent to
which a resident's death is shared with
other residents either in conversations or
through formal modes of communication
such as newsletters.
Conclusions
Individual’s experiences need
to be understood in the context
of wider cultural issues
regarding care and dying. Both
elements then need to be
addressed if the quality of end
of life care in care homes is to
be improved.
Wider values and beliefs regarding
how care for older people is provided
with respect to person--centred values or
not sits alongside beliefs about what
constitutes a good death and how this can
be achieved.
Leadership and senior
staff’s attitudes to staff development with
respect to end of life issues also contribute
to the wider culture of care.
This study is funded by the NIHR under
their Research for Patient Benefit
programme. We acknowledge the role of
East and North Herts PCT for hosting the
study
[i] International Observatory on End of Life Care, Lancaster University, UK
[ii] Centre for Research in Primary and Community Care, University of Hertfordshire, UK
[iii] Department of Public Health and Primary Care, University of Cambridge, UK
[iv]Lay members of CRIPACC’s Public Involvement in Research (PIR) Group, University of Hertfordshire, UK
[v] Department of Primary Care and Population Sciences, Royal Free and University College Medical School,
London, UK
[vi] Social Care Workforce Research Unit, King’s College London, UK