Death doulas as supportive companions in end-of-life care: A scoping review

Abstract

Background: Death doulas have gained greater attention recently by offering psychosocial, spiritual and other non-clinical support for patients with time-limiting diseases, including their families, with the potential to complement existing end-of-life care services. However, their roles, scope of practice and care impact remain poorly understood. Aim: To describe existing knowledge on death doulas regarding their roles, care impact, training and regulation. Design: This scoping review utilised Levac et al.’s framework and textual narrative synthesis to summarise the findings. Data sources: PubMed, Scopus, CINAHL, PsycINFO, ProQuest, Google Scholar were searched for relevant articles from inception to 20 May 2021. Empirical studies, narrative reports, unpublished theses and studies in English were included. Results: Thirteen articles were included. Death doulas take on diverse roles in end-of-life care. Their roles include providing psychosocial, spiritual, practical support, companionship and resource navigation. The positive impacts of engaging a death doula include continuous presence, holistic service and flexible payment regime. The negative aspects include role inconsistencies and confusion among healthcare professionals and the public. Conclusions: Death doulas can augment existing end-of-life care services by providing holistic and personalised care services at home or hospital settings. Their roles are still evolving and remain mostly unregulated, with little evidence about their impact. There is a need for more rigorous studies to explore healthcare professionals’ views about this role and examine the clinical outcomes among dying persons and their families.

Global Research Trend and Bibliometric Analysis of Current Studies on End-of-Life Care

“…Many countries have promoted the implementation of EoLC, to varying degrees, according to their economic status, resources, and energy [ 1 , 2 , 3 , 4 , 5 ]. Literature review studies have been accepted as an effectual means to map the existing intellectual territory [ 6 , 7 ]. The review works on EoLC research have been done from various perspectives.…”

“…For instance, in recent years, Yoong, S.Q. et al [ 6 ] conducted a scoping review, to explore death doulas as supportive companions in EoLC. Syvyk, S. et al [ 7 ] also conducted a systematic review and meta-analysis of studies on colorectal cancer disparities across the continuum of cancer care.…”

An international survey of Death Doula training organizations: the views of those driving Death Doula training and role enactment

“…We can see these training organisations in the media (such as those we found on a Google search), in tandem with a plethora of radio interviews, television appearances, podcasts and local directories with DD listings, all of which are helping to normalize this role in the public domain, albeit with a limited assessment of consumer need and understanding of the impact of different approaches and services. 1 , 9 …”

“… 8 However, not all DD see this integration in a positive light, asserting that their role is independent and should remain so. 9 …”

“…8 However, not all DD see this integration in a positive light, asserting that their role is independent and should remain so. 9 The professional ambivalence of DDs appears to be marked by their desire to avoid medicalization of death and dying with the emphasis on the nonmedical 'care work', 18 in what Francis 6 has termed the 'personal service industry'. However, this is countered by a drive to be acknowledged as worthy by health professionals in seeking authenticity via qualifications or professional legitimacy.…”