Dying well at home: commissioning quality end-of-life care

Dying well at home cover

This report was funded by the National Institute for Health and Care Research (NIHR) Policy Research Programme as part of the Partnership for Responsive Policy Analysis and Research (PREPARE), a collaboration between the University of York and The King’s Fund for fast-response analysis and review to inform the Department of Health and Social Care’s policy development. 

This report explores the roles of NHS commissioners in managing the current situation and planning ahead, as they are responsible for assessing and responding to increasing need at a local level, and for monitoring and assuring the quality of end-of-life care that they commission.

Their research sought to answer three questions. 

  • What do we know about the quality of end-of-life care for people who die at home, and any inequalities experienced by particular groups in the population, before and during the pandemic?  
  • What are NHS and social care commissioners in England doing to measure and assure the quality of end-of-life care for people who die at home, including any inequalities experienced by particular groups in the population?  
  • What are the implications of our findings for national bodies and local systems?  

Key messages that came out of the research, include:

  • The trend of increasing numbers of people dying at home, rather than in a hospital or hospice, is well established and set to continue
  • NHS commissioners have the essential role of understanding local need for end-of-life care and ensuring that high-quality services are in place to meet that need. 
  • When they interviewed commissioners of end-of-life care for adults for this report, many of them were not realising the full value of their role because they were not making good use of the data about need and the analytical resources that are available to them.
  • Commissioners were aware that there were likely to be inequalities and unmet need in their local area, but without better use of information they could not gauge the extent of these gaps or develop plans to address them. 
  • Generalist services such as GPs, district nurses or homecare providers often provide the bulk of end-of-life care for people who die at home. 
  • Commissioners also lacked information about individuals’ and carers’ experiences of end-of-life care.
  • Commissioners are starting to take on different roles to address these challenges – bringing together the range of services involved, facilitating joined-up approaches across those services, engaging communities and developing partnerships with shared understanding and commitment.
  • In developing new approaches, it is essential that social care is fully engaged and valued as a key partner, not just a stakeholder.