By: Anna Toane
“Everyone dies and that is OK,” says Kayla Moryoussef, a Toronto “death worker.”
And yet, we live in a death-denying culture.
We struggle to talk about death and dying, and many of us don’t know how to allow ourselves the time to grieve properly, let alone the space to transition through the difficult and emotional phase of actually dying.
It’s not about celebrating the fact that someone is dying or has died, rather that we can work to “accept the fact that people die and, even though it’s not an [easy] thing, it’s an OK thing that’s a part of life. As soon as we recognize that, it becomes less scary.”
An end-of-life or death doula can support this challenging, and often ambiguous, space. They can help begin to create a type of congruence between what’s happening and what’s to come, both for the person dying and for their loved ones.
[*The term Death Doula can also include Death Midwifery/Death Midwife, End-of-Life Doula, Death Worker etc.].
According to the Canadian Integrative Network for Death Education and Alternatives (CINDEA), “a modern-day death midwife is a facilitator, who offers a continuum of direct and integrated guidance and support to the death journeyer and their family throughout a personalized and participatory pan-death process.”
The End of Life Doula Association of Canada defines an end-of life doula as someone who:
“empower[s], educate[s] and encourage[s] people and their families to be involved in making [end-of-life] decisions.”
The word ‘doula’ is Greek for servant or helper and just as a birth doula supports women during the labor process, a death doula supports a person during the dying process (support which is specific to that person's needs, beliefs, and desires).
There’s a focus on “rais[ing] the standard of End-of-Life Care (EOLC)” over the death process, which can sometimes “span over months or even years, rather than [on] a single event. Doulas can help with supporting and planning for the future, regardless of diagnosis or illness.”
Doulas encourage “conversations or making plans when you are healthy, so the care received at the end of life is appropriate and aligned with your wishes.” These services are offered to both the person dying and their loved ones, making it a witnessed grieving and more of a collective community experience.
Examples of the types of services offered are:
Advocating on behalf of the dying person’s wishes
Grief and bereavement counselling
Supporting and facilitating talks, rituals, ceremonies etc. around death and dying
Specifically, a CINDEA-recognized death midwife's primary roles are to:
- Provide information on various options throughout the pan-death process (especially those which are alternatives to the cultural norms or less institutionalized), advance planning issues, necessary documents (death certificates, permits, etc. and filing them), and other support resources in the community
- Support the exploration of Death-care, Wholistic, Ecological, and/or Natural Alternatives (DWENA) options that are most meaningful to the death journeyer/family, and how to fulfill them
DWENA is the umbrella term used for all practitioners offering services at any part of the pan-death journey
- Educate and guide the family through whatever family-based/at-home options they choose; as well as support them in the any that may or may not include the use of a funeral home for specific individual services if needed, such as transporting the body (according to their choice)
- Provide in-person emotional and spiritual support, or facilitate access to specialists who can do so
- Generally support, and advocate for, the wishes of the death journeyer and their family throughout all of the pan-death stages [see 7 Stages on the Pan-Death Movement page]
And why might this be an important part of the death and dying process?
“The primary advantage of this role—besides offering a comprehensive range of direct services—is the continuum provided to the death journeyer and family throughout the whole of the pan-death process.” Our modern medical practices are becoming more complex, families often live greater distances from one another and there are a variety of lifestyles, traditions and wishes around death and dying (sometimes it’s assumed what choices will be made and with what support), resulting in a potential cultural disconnection of supports and services. As a member of your care team (in addition to the medical and palliative care team), death doulas can offer supplementary aid to provide deeper and more holistic support.
When we can alter the experience we have with death and dying, it can transform not only end-of-life care and the death transition, but also the days beyond death.
What might feel the most powerful in working with a death doula, is that doulas maintain a sense of calm for the dying,and those around them to create an opening for meaningful conversation about death and loss. It’s comforting to consider how this might impact someone’s (and their loved ones) progression through the experience of death and their final moments. And when we think about the additional emotional, physical and psychological support (on top of the medical support), it honours the awe-inspiring moment when someone takes their last breath—it’s important and sad and deserves to be cherished.
Making decisions during illness can be stressful, overwhelming and dehumanizing, but it doesn't have to be.
Eirene aims not only to challenge the way we see and understand death, but to unpack difficult conversations around end-of-life planning and navigate the complexities of death care.
We’re here to support you. Visit www.eirene.ca to learn more about our offerings.