End of Life Doulas Enhance the End of Life Care Experience

May 2020 blog post written by Olga Nikolajev, R.N., MA, CT

During the month of May we highlight the work of palliative care and celebrate those that give of themselves to be part of an end of life care team providing support, comfort and guidance. The end of life care team may include a palliative care physician, a pain and symptom management nurse, hospice volunteers, a social worker, chaplain, personal support worker AND an end of life doula. You may be like many others, who have not heard of end of life doulas or death doulas or thanadoulas as they are sometimes called.

So what is an end of life doula? Like a birth doula, an end of life doula provides emotional, physical, practical and spiritual support during a stressful time but unlike the birth doula, an end of life doula provides support at the end of life.

End of life doulas are part of a social movement who are supporting communities to enhance their death literacy, defined as “a set of knowledge and skills to understand and act upon end of life and death care options.” End of life doulas often provide death and bereavement education, assist in resource gathering and companioning through the end of life experience. In addition, end of life doulas may also be involved in reforming some of our current funeral practices by “opening up” the conversation about “green” options for body disposition and supporting family led funerals and ceremonies.

There are end of life doulas across the world who are serving in their own communities to provide support and care with the intent to enhance the quality of life for both the person dying and those that care for them. End of life doulas do not replace any member of the care team but rather enhance the end of life experience for the person dying and their caregivers, family and friends, including members of the care team. End of life doulas have the potential to enhance the end of life care team, which may include palliative clinicians and hospice staff, by facilitating advance care planning conversations, capturing a person’s wishes and educating the family about options and choices for their end of life experience, which may include post death care, creating legacy projects and supporting life reviews.

Currently end of life doulas are not part of our Canadian health care system but many of those that work in healthcare have received the training and have the skills to provide support to their patients using a “doula way.” End of life doulas have been highlighted in the news as illustrated in the following articles, and the public is curious to know and learn more illustrated by the interest in end of life doula training.

CBC Manitoba published an article about End of Life Doulas in September 2019

CBC Nova Scotia published an article in November 2019

Douglas College End of Life Doula course is designed for those that are or will be called the serve the dying and the bereaved. The course is offered across Canada and aims to provide a deeper understanding of the questions and issues that arise in end of life care, planning and preparing. The course is open to anyone and is currently offered on-line. While there are a number of end of life doula/death doula/thanadoula training opportunities across the world, it is important that both the end of life doula and their clients have a good understanding of the role, scope of practice, limitations and ethical responsibilities, especially as it pertains to the legal frameworks that exist and impact health care and after death care decisions.

As the demand for high quality end of life care increases may end of life doulas enhance the care team so that everyone can be educated and empowered through their end of life experience. In life dying matters.