Death doulas are supporting patients and families at end of life, however little clarity exists around the role and its place within health and social care systems. There is an imperative to explore the implications of this role which is gaining awareness and growing in popularity.
Death doulas were invited to participate in an online survey between April and June 2018 (Rawlings et al, 2019) and at survey completion were invited to a one-on-one interview. Ethical approval was obtained (number 7933).
Completed and partially completed surveys were received (n=190) and semi-structured interviews conducted (n=20). Survey results showed diversity within, and some commonalities across the sample such as training, experience/skills; motivations for becoming a death doula; role, services offered, and working practices. Interview results highlighted points of difference in terms of what doulas offer, perceived challenges, fees, and regulation.
Death doulas have emerged not only as a response to the overwhelming demands on families and carers, but also demands placed on health care professionals at the end of life. They have identified gaps in health and social care provision, perhaps taking on tasks that health professionals don’t have responsibility for, although there are inconsistencies in care delivery. Death doulas are not formally accredited and often work without oversight and in isolation. Some work in a voluntary capacity and many have a nursing background so there may be potential role overlap as well as blurred boundaries.
The role and scope of practice of death doulas is not clear-cut even within their cohort. Ongoing research is investigating potential future models of care (such as volunteers or lay-navigators), and in compassionate communities’ initiatives. Relationships to palliative care and to community care providers also warrant further exploration.
Rawlings et al. The voices of death doulas about their role in end of life care. Health and Social Care in the Community. Epub 2019 Aug 25