Abstract
BACKGROUND: Despite the availability of guidance for the provision of good end-of-life care, there are significant variations across the UK in its delivery. This study sought to identify the influences on end-of-life treatment and care planning across several areas where deficiencies in evidence-based practice have been identified, and to develop consensus among healthcare providers and users for recommendations on how to address these deficits. METHODS: An online survey (106 responses), qualitative interviews (55 participants) and a consensus-building exercise (475 participants in the initial round) were undertaken. Participants included people approaching the end of life, people important to them, and health and care practitioners who help people plan for the end of life or provide end-of-life care. Recruitment was via online methods, including social media and online newsletters of relevant charities and professional organisations. Thematic analysis using the framework method was used to analyse qualitative data. Synthesis of qualitative and quantitative data led to the development of statements regarding recommendations for advancing implementation of good practice. A two-stage consensus-building exercise asked respondents first to rate these statements and then to rate and rank further sub-recommendations in three areas. RESULTS: Results from the consensus building exercise confirmed that end-of-life care planning conversations are to be welcomed and encouraged, and that the priority should be to have the conversation (which could be initiated by a range of professionals, or people planning end-of-life care themselves), rather than to wait for an ideal time to have it. Further rounds identified specific components of a standardised record of end-of-life treatment and care preferences that should be prioritised, specific health and care staff that should be empowered through training in advanced communication, and aspects of communication most important to include in training for healthcare professionals. CONCLUSIONS: Our study has identified opportunities for action to improve end-of-life treatment and care by combining multiple stakeholder perspectives and building consensus among them: the resulting recommendations have sufficient granularity to be implemented and evaluated. They are of relevance to policy makers, those who train healthcare professionals, and those looking after patients approaching the end of life.