GUIDANCE FROM UK EXPERTS ON HOW TO ENABLE BETTER END-OF-LIFE CARE AND FACILITATE HOME DEATHS

Despite a growing desire amongst patients to spend their last days at home, many are unable to do so, leaving a lasting effect on both patients and families. We undertook a qualitative study with in- depth, semi-structured interviews in England, UK. A combination of face-to face and telephone interviews were conducted with 33 experts in the field of end-of-life care. These included policy makers, academics and hospital and community healthcare professionals from leading UK organisations. Interviews were transcribed and thematically analysed. As a result, three overarching themes were identified: ‘education’; ‘planning’ and ‘managing people’. These were further divided into a total of 12 sub themes containing practical guidance on enabling better end-of-life care. The theme of ‘planning’ contained seven subthemes including ‘policy’, ‘cost’ and ‘coordination’. The ‘education’ theme included ‘communication’ and ‘perceptions of death’. Of particular significance was the identification of the growing stigma and fear surrounding end-of-life amongst patients and healthcare professionals alike. ‘Managing people’ as a theme included the impact of ‘patient preferences’ and ‘family influences’ on enabling comfortable death at home. In conclusion, multiple barriers and facilitators to achieving death at home were identified in this study. The lack of training, education and funding within the National Health Service was highlighted, as was the importance of sociopolitical factors. These include the lack of social networks amongst elderly patients and the inequality of resource provision in hospitals and communities. We offer a list of recommendations to combat these barriers, paying specific attention to UK end-of-life policy and education.