What role do Death Doulas play in end‐of‐life care? A systematic review

Abstract

Current health and social care systems do not always meet the needs of the dying in our communities. As a result, patients and families are choosing to place their trust in those who can advocate for them or fill the gaps in care. Birth Doulas have been working with women during pregnancy and after birth for many years, and we are now seeing a new role, that of a Death Doula emerging in the end‐of‐life care space. How Death Doulas work within health and social care systems is not understood and we conducted a systematic review to explore the published literature to explore the role and potential implications for models of care delivery. Following the PRISMA recommendations, we searched the literature in January 2018 via bibliographic databases and the grey literature without search date parameters to capture all published literature. We looked for articles that describe the role/work of a death doula or a death midwife in the context of end‐of‐life care, or death and dying. Our search retrieved 162 unique records of which five papers were included. We analysed the papers in relation to relationship to health service, funding source, number and demand for services, training, licensing and ongoing support, and tasks undertaken. Death Doulas are working with people at the end of life in varied roles that are still little understood, and can be described as similar to that of “an eldest daughter” or to a role that has similarities to specialist palliative care nurses. Death doulas may represent a new direction for personalised care directly controlled by the dying person, an adjunct to existing services, or an unregulated form of care provision without governing oversight.

The voices of death doulas about their role in end‐of‐life care

“…People identifying as death doulas were invited to participate in a web‐based survey (Regmi, Waithaka, Paudyal, Simkhada, & van Teijlingen, ), developed for this purpose. Criterion sampling (Palinkas et al, ) was used, with a specific cohort of individuals required to help answer the research question: ‘What role do death doulas play in end‐of‐life care?’ Survey questions were informed by previous findings from a Massive Open Online Course (MOOC) on death and dying (Dying2Learn) developed and offered by members of the research team (Tieman, Miller‐Lewis, Rawlings, Parker, & Sanderson, ), and the systematic review on the role of death doulas in end‐of‐life care (Rawlings, Tieman, Miller‐Lewis, & Swetenham, ).…”

Whither a Welfare-Funded ’Sex Doula' Programme?

“…There is no consistent articulation about the scope and functions of doulas18 and the lack of clarity over the roles of doulas is hampered by the many models of care in which doulas operate. These models originated with birth doulas, but now count among their number: end-of-life (death) doulas,18 abortion doulas,19 and specific-care doulas 20.…”

“…These models originated with birth doulas, but now count among their number: end-of-life (death) doulas,18 abortion doulas,19 and specific-care doulas 20. Despite this variety, doulas can be characterised as non-medical coaches, facilitators, and assistants who offer skilled social, emotional, and practical support 21.…”

“…Due to this overlap, doulas are considered pseudo-professionals and, depending on the healthcare system, doulas can either be funded or voluntary 18. The distinguishing roles of doulas focus on advocacy, mental and physical comfort, communication, emotional support, resource introduction, active listening, and assisted decision-making; not all doulas offer practical support.…”

“…Accordingly, a doula not only provides support at the event itself, but can also extend care before and after to help an individual make informed choices. Most importantly, doulas focus on their client’s needs offering women-centred support in births,21 person-centred support in death,22 and ensure that patient-stated goals are met throughout 18. Being client focused, however, occasionally generates tensions with medical practitioners, who argue that birth doulas sometimes engender negative attitudes towards medical interventions 23 24.…”