There is a rapidly growing end-of-life or death doula movement across Canada. Over the last five years, there has been a significant increase in interest in learning about end-of-life care. Pallium Canada has seen an increase of close to 700% in the uptake of their basic palliative care education. And over the last three years, over 500 Canadians have engaged in some form of end-of-life care education or end-of-life doula training.
While conversations around death and dying are often challenging and complex, end-of-life doulas provide comfort, care, and support during these difficult times. End-of-life doulas provide non-medical, non-legal, and non-funeral support and are often called end-of-life companions, end-of-life coaches, or thanadoulas. These terms speak to what end-of-life doulas strive to do: to help educate, advocate and empower everyone in their end-of-life care journey. End-of-life or death doulas prepare, support, companion, and comfort the dying and their families, friends and caregivers during the end-of-life process.
The End of Life Doula Association of Canada describes the word “doula” as servant or helper. You may be more familiar with birth doulas, women who support other women during the birthing process. Likewise, end-of-life doulas provide emotional, practical and spiritual support before, during and after death. They can be very helpful in assisting the dying person in identifying what is most important to them in their end-of-life care plan.
End-of-life doulas can assist you and your family in Advance Care Planning by helping identify what matters to you and support you in sharing your wishes for future health care with your family, friends, and care team. Doulas can also help others in your family and may serve as a member of their support network by providing caregiver respite and offering a reassuring presence. An end-of-life doula can help you create your end-of-life plan by helping you reflect on what you need and assist you to live and die on your terms in ways that best align with your values. Doula’s services include planning and preparing for care, assisting with practical care coordination and documentation, legacy projects, rituals, and post-death care, including grief support.
End-of-life doulas are trained to provide person-centred care, to stay unbiased and non-judgemental, in an effort to help their clients to make the best decisions for their end-of-life care. Doulas strive to enhance the support team by offering their unique perspective and often serve as a “bridge” between health care providers, caregivers and funeral professionals.
The Canadian data has shown that many people are now exploring their options and choices around dying and death. Some reflect on their values, needs and fears around the end of life. Some opt to forgo hospital care and treatment and choose to die at home or in a residential hospice surrounded by the people and things that mean the most to them. Doulas often assist clients, their families, and caregivers in exploring the available options and the care that may be needed.
There are also some misconceptions about end-of-life doulas. One is that they only support those who request medical assistance in dying (MAiD). Because end-of-life doulas are trained to be neutral, empathic, and reflective in their support, they do not suggest or advise on any form of dying, death or post-death care. The second misconception about the role of the end-of-life doula is that they replace health care providers or hospice palliative care volunteers. Because doulas are non-medical, non-legal, and non-funeral, their scope of practice enhances the interdisciplinary care provided. Often doulas serve as a referral and resource finders. The final misconception about end-of-life doulas is that because they are not “licenced or registered,” they are not legitimate or educated. Most end-of-life doulas have extensive educational and training histories and are often members of other professional associations.
There is likely an end-of-life doula in your neighbourhood. If you decide to find a doula near you, you may wish to ask them a few questions. What type of services do they offer? What kind of training and experience do they have? Do they have some professional association affiliation? End-of-life doulas understand that end-of-life care requires a community, a team, and a collective willingness to provide the emotional, practical, physical, spiritual and social support needed at the end of life. They inform and educate themselves on the many aspects of end-of-life care support so that they may enable everyone to better educate, advocate and empower themselves and those they care about at the end.
They care, they comfort, and they serve.
For more information and to find an End-Of-Life Doula in your community, please visit the following organizations:
Article was written by members of the Death Doula Ontario Network
Sue Phillips, End of Life Doula Support Services
Elaine Andrews, End-of-Life Companion
Olga Nikolajev, End of Life Nurse Educator
Heather Spratt, Funeral Celebrant
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