Like a birth doula, but not really.
Let us begin with a little comparison and understanding of the role in relation to birthing. In 2017, in the US, birth doulas have created a special niche for themselves as providers of practical and emotional care for a woman and her family.
The term doula comes from the Greek word meaning 'a woman who serves.' They were slaves in those early days. A doula used to serve a woman through all the life cycles from birth through death. Fast forward to the 20th century, birth doulas focus on the birthing mother and family and are usually hired on a fee for service basis providing mostly non-medical, practical, and emotional support.
In the death and dying field, I remember seeing the term ‘end of life doula’ in print for the first time in 2005. Before that, I remember I first used the phrase ‘Death Midwife’ to refer to what I wanted to do in my community. I remember discussing the roles back then in relation to birth midwives and doulas, then realized pretty quickly, “…um, wait a minute…this is not a direct translation…”
First of all, you know what you are getting when you hire a birth doula. It is clear. But presently in the end of life movement, you may hear a whole slew of terms to refer to the same role, the role of ‘one who accompanies.’ ‘One who accompanies’ may be called a death doula, death midwife, soul midwife, transition guide, end of life guide, end of life coach, or many other things.
In 2017, after all these years since I first began, what has seemed to stick and what is being accepted into mainstream healthcare is the term ‘end of life doula.’ For the rest of this article, I will refer to the ‘one who accompanies’ as an end of life doula for simplicity.
Where we are similar to our birth doula friends is that we serve in one of life’s sacred passages, within one of the great mysterious portals in time. We are also similar in that we are companioning the person dying and most of the family as well. There is a final outcome, birth and death. But outside of these similarities, I find so much more differences in our roles rather than similarities. This comes from my personal experience with lay midwives with my VBAC home-birth in 1991 as well as observances in the field.
The whole dynamic of the time is different. There is no generalizing the time periods. Just because you are great in one setting does not mean you will be so in the other. There are such drastically different expectations and feelings and moods and needs at both time periods. Your natural way of being may be perfect during one period, but might not fit with the other. The physical demands are different as well, depending on what you are offering, but for the most part the birth doulas work is very physically taxing. If you are an end of life doula/caregiver, the same is true for you. The focus on our differences is important because so many people automatically assume they are the same. They are not.
One of the things that we are working on now in the end of life doula movement is that of professionalization and all that goes with it. The birth doulas have done well with this and I love the path they have left for us in how they charge for their services. There is a huge difference in expectation of services though. There are people who feel doulas should never charge for their service. On the one hand we love the idea of the ever-available volunteer who can spend days at the bedside, but so many of us and organizations struggle to make this happen. In many places this model of care is being carried out beautifully, but it will not fit every situation.
And then, there is the rest of the world.
There are many people alone without the support they wish they had and they have no idea there are people like us around to provide it for them. We want everyone to have this amazing service of being accompanied through the dying process if they are seeking it. Almost every person I have ever met tells me, “I wish I knew you when my mother was dying. I would have paid anything for someone to help us."
So, what does the kind of help that an end of life doula would offer look like?
It depends on the person and their background of expertise and interests, for starters. It also depends on if they are with an organization that has a specified set of tasks for them to do or if they are in private practice and can accommodate a person’s needs according to that person.
Even though hospices do fantastic work, as well as other organizations dedicated to people at the end of life, they are limited in what they can offer sometimes. Depending on the company and the area, there may be large gaps in care, advocacy, services, knowledge, and guidance. Skilled end of life doulas bridge this gap.
I have been mentoring end of life doulas since 2010 to build strong practices. We integrate who they are and their lifetime skills, gifts, and experiences with their vision to serve the dying. Each person I have mentored so far is doing something different. No two people are serving in the same way.
“End-of-life doulas provide non-medical, holistic support and comfort to the dying person and their family, which may include education and guidance as well as emotional, spiritual or practical care.”
-End of Life Doula Network
Most end of life doulas are non-licensed and non-medical. But there are many who are starting with a foundation as chaplains, nurses, certified nursing assistants, social workers, life coaches, reiki practitioners, psychicians, shamans, and therapists, among other professionals. Or, they may be adding an end of life component to their present practice.
What an end of life doula ‘does’ really depends on what skill set the doula has and what they want to focus upon now.
Our common, basic offering is this: emotional and spiritual companioning, with some practical support as well. You may also find an end of life doula who offers caregiving and practical house/errand/cooking services or cooking and meal prep. You may find an end of life doula who specializes in advance directives and advance care planning, funeral planning, memorial planning, medical assistance, and legal assistance. There are others whose main focus is using ceremony and ritual to help you transition and cope with the loss that is coming, as well as afterwards. There are end of life doulas who are therapists and only focus on end of life issues and companioning others through that time. There are home funeral guides, bedside singers, and end of life doulas whose focus is on helping the family with legacy tributes. There are nurses like me who also offer medical support.
I'll use myself as an example: I came to be an end of life doula through my hospice nurse work. Isn't that the same thing you might be thinking? Well, no it's not. As a hospice nurse, I have very clear and defined roles I must practice within to be part of the organization. I have boundaries and time constraints, etc. My heart is the same, my passion is the same, my desire to serve the person and family is the same. The way I am able to serve is different though.
As an end of life doula to a family, because of my personal specific skill set, I choose to help them in any way they need, from complicated bedside nursing to errands, from cooking breakfast after a long night of vigiling to witnessing a cremation, from mediating family meetings to playing with the grand-kids as they work through what is happening.
I also consult with people through medical decisions and crises prior to hospice. I support people emotionally, spiritually, energetically, and practically as needs arise. We do ceremony and create meaningful ritual. I help people get their affairs in order. There are so many ways that I may serve, but the most powerful component of my doula practice is ‘presence.’
Presence is everything when you are assisting the dying and their family. It is deeply listening, respecting their strength, honouring their grief, and holding all of this in a spacious and compassionate way.
'Being' with them is everything. The quiet but powerful presence of someone who is there to support you, who knows what dying looks like, who can guide your family through what to expect is priceless and powerful. We are mostly there to empower the people present and to guide and share practical end of life wisdom so that they can care for their own loved ones with confidence. This is what hospice wants for their families, too. We doulas are adjuncts to hospice in many ways. We reinforce their presence. We have more time.
When many people tell of the death of someone they love, they usually recall this time with incredible detail. We want to be part of increasing the positivity of this time for people around the world. Some of us have forgotten, some of us were never taught, but doulas are those guides that will bring this knowing we have had since time began about how to die in peace and how to assist in that process.
We are needed now more than ever because there has been a big chunk of time when we sent each other to hospitals no matter what and tried at all costs to deny the reality of our dying.
And we are not dropping dead any longer like we used to; we are living long lives, sometimes with chronic debilitating illnesses. Dying is done differently today than it was 75 years ago. End of life doulas are those guides to help adjust to what is important as we die in the modern age - and do it well.
I imagine a day when doulas won't be needed anymore as people will know how to tend to their loved ones. They may not like it, but they will know how. Caring for our dying and dead won't be an unknown; we will know again how to do it because it will become a part of our culture again. We will have been shown by those who know, these we call end of life doulas.
We have a long way to go to get there.
My hope for everyone is that if you are scared about your dying or the dying of someone you love, that you have a hospice available in your community for support and that you have a loving doula in your community to be with you as well.
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