Written by Deb Rawlings, Senior Lecturer Palliative care, Co-Investigator End of Life essentials Project. Flinders University
The last year of someone’s life is spent mostly at home, likely interspersed with hospital admissions and medical appointments with informal caregivers (often family or friends) tasked with providing care for them. As health and social care services are not fully able to support people 24 hours a day and meet complex needs, families are left to take on the caring responsibilities that can be physical, emotional, fiscal, spiritual and practical, with substantial gaps remaining. Compassionate communities movements see community or social support mobilised to help in end of life care, but does generally require someone to organise these informal, supportive networks.
Some of the gaps in health and social care provision are being filled by death doulas, a role that has emerged in end of life care. Based on the birth doula role (cited in the literature since the 1970s), a death doula (from the Greek meaning woman slave or good woman) has become a term for a non-medical person who helps to support someone who is dying.
While there has been much in the media about the death doula role, as academics and researchers we looked to the literature for answers via a systematic review. However, we discovered little in the evidence that described the role. The next logical step was to ask death doulas themselves what their role is in end of life care, and we did this with the help of Australian death doula training organisations, the Groundswell project, and via CareSearch newsletters. Over 190 people answered the survey in part or in full providing us with information about training, registration and certification, reasons for becoming a death doula, about the role itself, and working practices.
What we found is that neither the survey nor the interviews provided enough clarity to fully understand the role. There appeared to be a lack of common understanding within the death doula community and outside as to what a death doula does, with no two doulas providing exactly the same service, neither are they working to a consistent business model. Death doulas also do not appear to think that health professionals understand what it is that they do, indicating that this causes concern that death doulas are a threat.
The interviews allowed us to look more at what it is that death doulas can offer that health professionals do not. Health professionals have defined roles and formal and/ or accredited training and scope of practice, while death doulas are not registered nor certified and do not have standardised training. A lack of a death doula business model sees vast differences in what is offered and what a patient or family member can expect including care options and fees.
Much of the differences were about flexibility, time, individualised care, and advocacy although arguably there is distinct overlap with, in some cases, palliative care volunteers and nurses. However, what also needs to be considered is that some health professionals are working as death doulas and the reality of this should be considered in relation to roles and responsibilities, legal requirements, and codes of conduct. Death doulas have the potential to complement the health professional role in new models of service provision, however some may want to remain independent and not under the scrutiny of an umbrella organisation.
Death doulas are a response to a system that is coping with unprecedented demand and changing expectations. The role highlights that the needs experienced by those at the end of life might be more than those identified by the health system, and challenges what is a health system responsibility and what is personal arrangements in the complex business of dying. There is a need to ensure that there is transparency in the role and its relationship not only with the caregivers but with health professionals and social care practitioners. We will continue this important work going forward.