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What is the study about?

Developed in collaboration with the National Institute for Health and Care Excellence (NICE), the project seeks to address a known shortcoming in healthcare provision in the UK: that many people nearing the end of their lives are not consulted on their preferences for end-of-life care. This can result in less personalised care and, ultimately, poorer experiences for individuals, their families and carers.


The study will focus on approaches to identifying people who may be approaching end of life, on experiences of conversations about end-of-life care preferences with healthcare professionals, and on how best to ensure these conversations take place and are used to inform care decisions. The outputs from this work will be used, in discussion with stakeholders, to generate evidence-based recommendations for improving the implementation of NICE guidance for end-of-life care.


A key guiding principle for this study will be that it is highly participatory, with involvement from people who may be approaching end of life, the people important to them, clinicians and other relevant stakeholders at every stage. The study will include a survey of current experiences and qualitative interviews with all affected groups, and a consensus-building process to identify the best ways of improving practice. The quality and impact of the research rely on recruitment of participants who reflect the breadth and diversity of those affected by the issues. We would be very grateful if you could help us to reach people affected by these issues by advertising the project to your network, for example through newsletters, e-mails or social media, to ensure that as many people as possible can contribute to our understanding.


We are keen to include the views and experiences of a wide range of people, including people planning for the end of life, their family members and others important to them, and individuals from a wide range of professional backgrounds. We are also keen to ensure that the work is informed by people from a wide diversity of backgrounds. We believe that assistance with publicising the study and recruiting participants from your organisation will help us to achieve this.


We hope that you will be able to support our efforts to improve end of life care - please do let us know by replying to We would be pleased to discuss the project in more detail, including other ways in which you or your organisation could contribute – please do not hesitate to contact us if you require any additional information. If you would be happy to assist us with recruiting participants, we will provide more details soon, including links and suggested text for communications.

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