Centre for Death & Society

Understanding the role of care homes in palliative and end of life care

 

Principal Investigator: Jeremy Dixon

Research Team: Malcolm Johnson

Funder: Public Health England 

 
Departmental Themes

Background

There are estimated to be 386,000 people living in approximately 17,000 nursing or residential homes in England. With the drive to support more people in their own homes, the pattern of care home provision is changing with people now entering care homes at an older age and living in the care home for short time periods. Over 100,000 deaths take place in care homes each year and so ensuring access to high quality end of life care in this setting is particularly important.

There has been a focus on the quality of care for people living in care homes over recent years with much progress in staff training and support and examples of new and innovative models of care being introduced.

However, issues have been raised about the quality of care delivered in care homes including variation in quality of care in care homes, often shortages of staff in nursing care homes, and the standard of and access to healthcare for care home residents. 1 2

Evidence shows that more people would prefer to die at home and few would prefer to die in hospital 3. Currently almost 50% of adult deaths in England occur in hospital. The National End of Life Care Strategy, published in 2008 recognised this discrepancy and aimed to ensure that people’s preferences for place of death were acted upon wherever possible. Since publication of the strategy, there has been a focus on supporting more people to die at home or in their usual place of residence which may be a care home 4. 
 

Project rationale and aims

The aim of this project is to assess the role of care homes for people and their families at the end of life. The project will identify examples of best practice and innovative models of care, consolidate the existing evidence and information about palliative and end of life care delivered by care homes and explore how health and social services engage with care homes and support residents. It will identify where further information is needed, and propose guidance for care delivery.

The project will explore patterns of care delivery and integration of care with NHS and social services, identify evidence on people’s preferences regarding care homes and the impact of moving people into a care home close to death. The project will explore the economic issues and incentives for place of care including NHS Continuing Healthcare Fast Track funding and rapid discharge home to die. It will also consider care home staff competences for supporting people and their families at end of life.  It will look at availability and access to training and make recommendations in respect of sustainability of staff competences in care homes where there are often recruitment and retention challenges for nursing and care staff.

The project will summarise and collate the existing evidence and present in a way that helps the sector, the NHS and other decision-makers to make delivery and policy decisions. It will include:

  • Gathering evidence from the published literature
  • Gathering evidence from care home projects currently underway in England.
  • Bringing together national leads with expertise and knowledge about care homes, social care and end of life care to explore current knowledge about deaths and care and patterns of care for people that die in care homes
  • Summarising the findings and recommendations in a published report.

The project will incorporate the data analysis being carried out by the National End of Life Care Intelligence Network (NEoLCIN) analyst team to describe the deaths in care homes and the recent trends using 2003-2013 national data.

The project will align with and complement the NEoLCIN health economics project also underway to assess the health economics of end of life care and the impact of shifting care out of hospitals into the community.
 

Project outputs and impacts

As previously mentioned, this project involves elements such as:

  • bringing together what is known about palliative and end of life care delivery in care homes from the literature, from associated projects and from expert knowledge
  • working to define optimal care pathways and care models

Specific Outputs

  1. A workshop bringing together academic and clinical experts, residents/carers, local government representatives and health economists to inform the report.
  2. A report summarising the current knowledge and gaps in the evidence covering the issues mentioned above together with recommendations and guidance for policy, planning and commissioning of services.
  3. To support PHE in delivery of a national event to disseminate the project findings and recommendations.

Failing the Frail. British Geriatrics Society. 2012

Special Review of care home resident’s access to healthcare services. Care Quality Commission. 2012.

3 Office for National Statistics (2014) National Survey of Bereaved People (VOICES-SF) 2013,

4 National End of Life Care Intelligence Network, (2014). Proportion of deaths in usual place of residence
 

Find out more about this project

Name: Mrs Caron Staley
Title: Centre Manager for Death and Society
Department: Dept of Social and Policy Sciences
Location: 3 East 3.26
E-mail: c.staley@bath.ac.uk
Phone: work+44 (0) 1225 386949