Research for Patient Benefit - EPOCH

The experience and expectations of older people resident in care homes, their carers and professionals of end of life care and symptom relief needs: a prospective study

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 person is largely unknown.

Studies often rely on proxy accounts and retrospective data that focuses 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 is 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 affects the recognition of need and access to services.

This research collaboration with East and North Herts PCT, the universities of Cambridge, Lancaster, Surrey, UCL 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.

The 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 and involvement of older people and their care worker in research design and development.

Service collaborations with NHS partners and those involved in E of E and national implementation end of life care programme ensure the study is informed by service developments and national evaluations of end of life care tools.    

Aims and Objectives

• To understand how the care home environment influences the views, experiences and expectations of end of life care in care homes
• To listen to, to describe and analyse the characteristics, expectations, experiences and needs of older people resident in care homes who are in the last years of their lives
• To describe how different contexts and models of care influence an older person's experience of end of life care
• To establish what kind of palliative care support is required to ensure older people, care home staff and relatives achieve good end of life outcomes
• To identify the treatments and interventions received and services and resources used leading up to the older person's death
• To establish meaningful outcome indicators for older people in care homes that receive end of life

Study Phases

Six care homes in three PCTs in the East of England are being studied prospectively for one year. Data has been collected on 121 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 has been 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 palliative care staff have been interviewed to establish what facilitates and hinders providing end of life care to this population. The study was approved by the ethics committee review and data collection started in June 2008 and was completed in December 2009.

Current phase: data analysis and writing up.

Project information

EPOCH: ExPeriences of Older People in Care Homes

Project funder: National Institute for Health Research for Patient Benefit programme.

Project grant total: £230720

PI: Claire Goodman CRIPACC staff: Elspeth Mathie, Melanie Handley (job share)

Collaborating Investigators and Centres: East and North Herts Primary Care Trust, University of Cambridge, Lancaster, Surrey, Kings College London and University College London.

Project Duration: Two years (Jan 2008-May 2010)