Are you the caregiver of a person receiving end-of-life care? Are you comfortable in this role or do you feel anxious and uncomfortable? Do you know their wishes for the end of life?
Family members are often expected to take care of their loved ones at the end of their life and accompany them until their last rest. But today, families are smaller and geographically dispersed: many people find themselves alone (or with limited support) at the last stage of their life.
We have been witnessing the emergence of a new profession related to end-of-life care: the end-of-life doulas (sometimes referred as "death doulas"). The term “doulas” typically refer to birth attendants who continuously support pregnant women before, during and after childbirth. End-of-life doulas also offers continuous support, but to people at the end of life and their families.
What is the role of a end-of-life doulas and how does it fit into the continuum of end-of-life care?
What the research tells us
A recent moderate-quality systematic review identified five studies examining the role of end-of-life doulas.(1) This review reveals that their role is not always well understood or recognized and that the tasks associated with it varies widely.
Various non-medical tasks
As they are not yet considered to be regulated health professionals, they offer non-medical support complementary to palliative and end-of-life care. As needed, they can provide a compassionate presence (for example, read stories, put on music, listen to the dying person and their loved ones, hold their hands, soothe them), help with decision-making by giving information, help navigate health and social services to meet needs, or help loved ones to come to terms with imminent death. (1)
Roles varying according to the care settings
In hospital settings or care establishments where end-of-life doulas offer psychological, social and spiritual support, they often have a volunteer status. Outside of hospital settings, when they are hired directly by families, for example, their services are usually remunerated.(1)
In search of recognition
The role of end-of-life doulas is still poorly understood. While some describe them as "older daughters" caring for their dying parents, others see their role more as having similarities to nurses specializing in palliative care.(1)
Although courses to become a end-of-life doula are offered in many countries and Canadian provinces, there is currently no official certification to practise this profession. However, the End-of-Life Doula Association of Canada continues to work to ensure that end-of-life doulas are considered part of the palliative care team.(2)
Talk about your wishes about end-of-life care and get support
Although death is a part of life, it is a complex experience that everyone approaches differently. Palliative care provides a certain level of medicalized physical comfort, as well as emotional and social support to patients, their families and their caregivers.
The authors of the review conclude that end-of-life doulas may represent a new direction for personalized care directly controlled by the dying person and a complement to existing services.(1)
It's never too early to make your end-of-life wishes known, and to plan for the end-of-life care you want. Don't hesitate to engage in conversations with loved ones and healthcare professionals.