Compassionate community structure and function: a standardised micro-model for end-of-life doulas and community members supporting those who wish to die at home

Abstract

Background: End-of-life doulas are an emerging, non-medical support and advocacy role for the dying and their caregivers. As more and more people are dying at home, research shows end-of-life doulas are increasingly in demand as non-medical advocates and companions for the dying, and their friends and families. Compassionate communities are essential to those who wish to die at home by helping to avoid carer stress and burnout associated with physical and emotional labour when a person is at end of life. However, compassionate community models are top-down in nature as they focus on public policy, missing a domestic-scale, standardised design applicable when someone wishes to die at home. This gap affects care networks and communications and arguably hinders the work of end-of-life doulas. Aim: Findings from original qualitative research with end-of-life doulas in four countries demonstrated the importance of compassionate communities for death literacy and support for a person at end of life and their networks and that all practitioners were using ad hoc, variable approaches to compassionate community formation and maintenance. A micro-level standardised and replicable model for organising and maintaining compassionate communities for end-of-life doulas which completes the established compassionate community model was developed to fill this gap and provide a vital tool for end-of-life doulas and training programmes internationally. Methods: Thematic analysis of research data from qualitative semi-structured interviews with end-of-life doulas in four countries was undertaken and considered as a cohort as well as by country. Conclusions: A model was developed that addresses a gap in international approaches to practice, offering a standardised way to discuss, teach, and implement compassionate communities for end-of-life doulas in a variety of countries and languages. This article discusses the research and model in detail.