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Developing capacity

EPOCH: The experiences and expectations of older people of end of life care

Purpose

The aim of this study is to explore the experiences of older people resident in care homes who are approaching end of life with a focus on care and symptom relief. 

Research team

Prof Claire Goodman (Principal Investigator), Jayne Wright, Elspeth Mathie, Di Thompson, Alex Mendoza, Daphne Westwood, Marion Cowe, Diane Munday, University of Hertfordshire
Katherine Froggatt, University of Lancaster
Jill Manthorpe, SCWRU
Stephen Barclay, University of Cambridge
Steve Iliffe, University College London
Heather Gage, University of Surrey

Funding

National Institute for Health Research for Patient Benefit (East and North Hertfordshire PCT) 2008 – 2009

Background

Many older people aged over 85 live in a care home. Dying is part of care home life and an important aspect of the overall quality of care provided. Despite recent initiatives to improve access to palliative care services, the experience of the older people are largely unknown. Studies often rely on proxy accounts and retrospective data that focus on prognostication or the management of symptoms. How individuals engage with the anticipation of dying and if living in a care home affects their decisions and need for support are unknown. It is also only partially understood how the culture and organisation of a home affects end of life care or if different dying trajectories, high levels of cognitive impairment and co-morbidity affect the recognition of need and access to services.

This research collaboration with East and North Herts PCT and East of England SHA builds on previous work on older people's access to palliative care in care homes, how health and social care staff work together in care homes and the palliative care needs of people with dementia. It follows the recommendations of the NICE/SCIE guidelines on dementia care and builds on work on how older people in care homes access palliative care.

It complements work on place of death, supporting care homes staff in palliative care diagnosis and care of people with dementia the implementation of the Mental Capacity Act 2005 and involvement of older people and their care workers in research design and development. Service collaborations with NHS partners and those involved local and national implementation end of life care programmes ensure the study is informed by service developments and national evaluations of end of life care tools.

Methods

Seven care homes in three PCTs in the East of England were studied prospectively for one year. Data were collected on all the residents' characteristics, heath and function at baseline and then at four monthly intervals on areas specific to their health and use of NHS services. A purposively selected sub sample of older people was interviewed at different points over the year to explore their views and experiences of living in a care home and how this shapes their views and decision making about end of life care. Care home staff, primary care staff and, when relevant, palliative care staff have been interviewed to establish what facilitates and hinders providing good end of life care.

Timetable

2008 – 2010

Output

Articles

Barclay, S., Froggatt, K., Crang, C., Mathie, E., Handley, M., Iliffe, S., Manthorpe, J., Gage, H. & Goodman, C. (2014) 'Living in uncertain times: trajectories to death in residential care homes', British Journal of General Practice, 64(626): e576-e583.

Goodman, C., Mathie, E., Cowe, M., Mendoza, A., Westwood, D., Munday, D., Wilson, P.M., Crang, C., Froggatt, K., Iliffe, S., Manthorpe, J., Gage, H. & Barclay, S. (2011) 'Talking about living and dying with the oldest old: public involvement in a study on end of life care in care homes', BMC Palliative Care, 10:20.  

Impact

The study will link in with the Department of Health End of Life Strategy.

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