End-of-life doulas: A qualitative analysis of interviews with Australian and International death doulas on their role.

Abstract

Death doulas (DD) are working with people at the end of life in varied roles with more clarity needed around their role and place within the health and social care systems. The aim of this work is to explore the DD role in end-of-life care from the perspective of DDs. A sub-group of 20 DDs from a larger quantitative survey participated in semi-structured telephone Skype or Zoom interviews. Interview data were analysed using thematic analysis. Seven themes emerged from the qualitative analysis: what a DD offers, what a DD does, challenges and barriers, occupational preferences, family support, contract of service/fee and regulation. There is a general perception that healthcare professionals (HCP) do not understand what it is that DDs do; thus, the current study has helped to demystify the DD role and potentially reduce suspicion. The lack of a DD business model sees inconsistencies in what services each DD offers and what patients and families can expect. End of life is complex and confusing for patients and families and there is a need to further explore the DD role and how it can work when there are many inconsistencies in working practice. More research is required to look at the interplay among DDs, HCPs and palliative care volunteers in addressing the gaps in care provision and how these relationships might be more seamlessly managed.