Describing the end-of-life doula role and practices of care: perspectives from four countries

Abstract

Background: End-of-life doulas are emerging as a potentially important new form of community-based caregiving in the global North, yet we know little about this form of care. The aim of our study was to solicit the perspective of key stakeholders and early innovators in community-based end-of-life care about the development and practices of end-of-life doulas. Methods: We conducted 22 semi-structured interviews with participants in four countries where end-of-life doulas are most active: Australia, Canada, the United States, and the United Kingdom. Findings: This article focuses on participants’ description of the end-of-life doula role and attendant practices, and our findings provide the first detailed taxonomy of the end-of-life doula role and specific services on the basis of the perspective of subject experts in four countries. We situate our findings within literature on the professionalization of caregiving, with particular attention to nomenclature, role flexibility and boundary blurring, and explicit versus tacit knowledge. We also discuss the importance of jurisdictional considerations as the end-of-life doula movement develops. Discussion: We speculate that the end-of-life doula role is potentially experiencing common developmental antecedents similar to other now-professionalized forms of caregiving. Our findings contribute substantial new information to the small body of empirical research about the end-of-life doula role and practices, provide critical firsthand insight as the movement develops, and are the first research to explore end-of-life doulas from a comparative international perspective.