End-of-Life Doulas

A new and potentially important form of community-based end-of-life caregiving is emerging in the global North. While there is no mutually agreed name for this role, common descriptors include ‘end-of-life doula’, ‘death doula’, and ‘death midwife’. These names encompass a diversity of laypeople, primarily women, who provide a range of nonmedical supports—social, emotional, practical, and spiritual—for people nearing the end of life, including those close to them. In some regions, support may include after-death care of the body and funeral planning education or services. Practitioners also host community education and social events such as advance care planning workshops and Death Cafes (which you’ll be learning about later this week).

The term ‘doula’ derives from the Greek word meaning female slave or servant and was popularized by the natural birth movement in the 1970s to describe lay-trained women providing nonmedical assistance during and after pregnancy. End-of-life doulas (EOLDs) explicitly draw from this history and model but at the other end of life, by providing informed companionship and resources before, during, and after death.

We spoke with more than 20 key stakeholders and early innovators in community-based end-of-life care in four different countries about the development and practices of end-of-life doulas. We developed the above taxonomy of role descriptors based on their responses.

Laywomen have long engaged in community end-of-life and death care, well before the concept of EOLDs emerged. EOLDs, therefore, frame their work as both a ‘reclaiming’ of community tradition as well as a new quasi-professional role within rapidly changing social and health care environments. EOLDs and their advocates argue that this role holds the potential to radically improve end-of-life care through empowering individuals, developing ‘compassionate communities, and reducing the burden on health care systems.

The first formal use of ‘doula’ to describe a specific kind of end-of-life accompaniment was employed by the ‘Doula to Accompany and Comfort Program’, a grassroots volunteer-driven model launched in 2001 through the New York University Medical Centre’s Department of Social Services to focus on the social, psychological, and spiritual needs of individuals at risk of isolation during the dying process. While similar EOLD volunteer models have been developed elsewhere, particularly within hospice and palliative care programs, overall these institutional programs remain relatively rare. The last few years have instead evidenced the EOLD role developing primarily as an independent community-based role.

EOLDs have captured widespread attention in the global North with numerous articles appearing across mainstream platforms such as the BBC, The Guardian, Huffington Post, The New York Times, and Vogue Magazine. Interest is particularly strong in Australia, Canada, the United Kingdom, and the United States, and these countries are where the development of an EOLD ‘movement’ has been most evident. Each of these countries has seen a rapid growth of training programs offered by entrepreneurial individuals, non-profit organizations, and higher education institutions.

EOLDs are a new response to the complexities of modern dying. At the same time, this role is still developing and in flux. Many practitioners are self-organizing into associations and pursuing accreditation pathways in the desire to integrate within and support hospice and palliative care teams. Given their grassroots history, other practitioners see standardization as a constraint and wish to remain outside existing healthcare professionalization and bureaucracy which fragments holistic care. Some practitioners offer their services freely to the community; others undertake the work as a semi- or professional career and charge a fee, often at a sliding scale. Even naming the role is a source of difference and debate. These kinds of differences and disagreements are common within any new field of practice, and it will be very interesting to see how this role develops as it increases in popularity.

Key Messages

• End-of-life doulas are emerging as an important new form of community-based end-of-life care.
• End-of-life doulas provide social, emotional, practical, and spiritual support for people nearing the end of life, including those close to them.
• There is a strong connection between this new role and the natural birth movement in the 1970s.
• There are diverse opinions about the professionalization of the role.

[1] This section is taken from a longer published article which can be found here: Krawczyk, M., & Rush, M. (2020). Describing the end-of-life doula role and practices of care: perspectives from four countries. Palliative Care and Social Practice, 14, 2632352420973226.