Improved planning of end-of-life treatment and care
Despite the existence of clear recommendations for good practice in end-of-life care, many people nearing the end of their lives are not consulted on their wishes and preferences. This can result in less personalised treatment and care, and poorer experiences for individuals, their families and carers. This project will learn from the views and experiences of a wide range of people in order to broaden our knowledge of best practice in end-of-life care, supporting better use of guidance produced by the National Institute for Health and Care Excellence (NICE).
Background
End-of-life care refers to the treatment, care and comfort given to a person in their final days or months. The aims are to ensure that people can live as well as possible and can die with dignity. This involves taking a patient’s wishes and preferences into account when planning the final stages of life, including considerations around the nature and place of the treatments and care they might receive.
NICE has produced a range of guidance on best practice in this area, in particular guidance NG142 on service delivery of end-of-life care for adults. This focuses on the organisation and delivery of services to provide care for people in the final weeks and months of life, and supports the individual in planning and preparation for this period, along with other people including family and carers.
Despite the existence of this guidance, currently implementation of good practice around end-of-life care remains inconsistent across the country. This means many people do not have their wishes fully taken into account during their final months and days.
Approach
This programme aims to support better and more consistent uptake of NICE guidance by learning from the views and experiences of a wide range of people.
Using varied research methods (combining a review of existing literature and resources with new research), this study will review different approaches to improving the way treatment and care at the end of life is planned. This includes approaches to starting discussions about preferences for treatment and care at the end of life, how to get the most out of these important conversations, and how to ensure those preferences are documented and used in practice.
Research will include:
- A literature review, led by RAND Europe, which will identify relevant literature not already covered by NICE-commissioned systematic reviews, as well as a identifying and reviewing existing tools and resources designed to support better end-of-life care.
- Qualitative interviews with representatives from stakeholder organisations with an interest in end-of-life care.
- Survey and interviews with people approaching the end of their lives, the people important to them, and the health and social care staff involved in their care.
- A Delphi-informed consensus-development exercise to identify views on what might help improve implementation of end-of-life care guidance. The Delphi approach attempts to answer a research question by bringing together a group of subject experts — in this case including people approaching end-of-life and people involved in various ways in their care —to discuss the issues and attempt to reach a consensus view.
Additionally, this study will examine people’s views of one widely used tool, the Recommended Summary Plan for Emergency Care and Treatment (known as ReSPECT), drawing on the experiences of patients, carers and staff involved in the ReSPECT process.
The study benefits from guidance from a steering group and a patient and public advisory group, with recruitment supported by a wide range of organisations and groups with an interest in end-of-life care planning.
Funding and ethics
This study is funded by the Health Foundation’s grant to The Healthcare Improvement Studies Institute (THIS Institute). It is independently led by THIS Institute and the National Institute for Health and Care Excellence (NICE).