Background
The importance of high-quality care for people approaching end of life is widely recognised, but in the United Kingdom (UK) practice is inconsistent. Despite the availability of guidance from the National Institute of Health and Care Excellence (NICE), there are wide variations in indicators of quality such as the opportunity to prepare personalised care plans that set out preferences for treatment and care at the end of life. Implementation challenges of this kind can lead to people either not receiving the care they need, or receiving inappropriate interventions that they do not want, that are costly for healthcare systems, and that are distressing for individuals and their informal carers.
This report describes an innovative programme of collaborative work led by The Healthcare Improvement Studies Institute (THIS Institute) at the University of Cambridge and NICE, focused on better understanding problems in implementation and identifying possible solutions. Using a range of research methods including qualitative interviews, a survey, and structured consensus-development processes, the programme sought to generate learning for NICE and other stakeholders on how to improve implementation of guidance, by:
- identifying and analysing the key influences on implementation of end-of-life care guidance (relating to the identification of people approaching end of life, the initiation and conduct of conversations with them about their preferences for treatment and care, the recording of these preferences, and their use by health and social care practitioners across the system); and
- consulting and seeking consensus across multiple relevant stakeholder groups on recommendations for the design and development of approaches and resources most likely to improve implementation of guidance.
The programme also acted as a ‘proof of concept’ for a model of collaboration between NICE and THIS Institute that could be readily transferred to other ‘implementation gaps’ faced by NICE. It demonstrated the viability of a rapid, replicable model for identifying the problems that underlie inconsistent or imperfect implementation of NICE’s guidance, taking a highly collaborative approach involving a range of affected stakeholders. The programme made use of the opportunities for rapid research and development offered by THIS Institute’s online Thiscovery platform, which facilitated much of the data collection.
Key messages
- Different health and social care professionals find themselves in positions to initiate conversations about the end of life, but they may not feel confident to do so.
- People approaching end of life, those close to them and professionals agree that it is important to discuss end-of-life care preferences, even if the optimal circumstances for such discussion never quite present themselves.
- Professionals including general practitioners and staff in care homes may benefit from training and resources to talk about the end of life with their patients.
- Discussing end-of-life care preferences should focus on what matters to the individual, what they value in their life and what concerns they have.
- It is important to document individual preferences and to ensure that these preferences can be easily shared across the health and care system.
- People approaching end of life, those close to them and professionals agree on key components that should be included in accessible records. However, ensuring that these preferences can be easily shared across the health and care system is currently a challenge.
