Becoming an End-of-Life or Death Doula provides you with the ability to give this emotional supportive care and can help families organize their wishes and needs at a time when most are extremely overwhelmed. You may also help them carry out their tasks. To those of you who understand a birth doula role of emotional and practical support to the birthing woman and family, end-of-life doulas do the same at the end of life—emotional and practical support to the dying person and family.
And many needs arise at the end of life.
Origins of the End-of-Life Doula.
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 were the first to use the term to apply to their own support during birth. We, who serve at the end of life (outside of the mainstream healthcare system), are using the doula term for us as well, as it fits perfectly.
There has been so many terms used for the ‘End-of-Life Doula’ role since those days when I began (2005), i.e.: death midwife, death doula, soul midwife, soul doula, death walker, death coach, doulas for the dying, etc. But in recent times and now in 2020, ‘End-of-Life Doula’ or 'Death Doula' is what most people and organizations say when they refer to our role. For the rest of this article, I will refer to the ‘one who accompanies’ at the end of life, as an End-of-Life Doula (EOL Doula) for simplicity.
Similarities with Birth Doulas.
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.
Differences Between Us and Birth Doulas.
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.
Professional Issues of the End-of-Life Doula.
As we continue to evolve as an ‘industry’ now (over the past 15 years), one of the things that we are working on is that of professionalization and all that goes with it. We must bring a clear definition of our role and what we do so people understand how to utilize us and how to refer to us. There must be excellent end-of-life or death doula training.
The birth doulas have done well with this and I love the path they have left for us in how they structure their service and their business model. But again, our care delivery is very different and the way we assist people is different as well. There is a huge difference in expectation of services too. I have never met someone who disagreed that a birth doula should receive compensation for their work. However, there are people who feel doulas should never charge for their service.
We love the idea of the ever-available volunteer who can spend hours and days at the bedside, but so few can make this happen unless they are supported financially somehow. EOL Doulas serve in a variety of ways: as a volunteer within hospice or hospital or community organization. They also are in private practice with a business model of consultant or fee for service, as a companion company would offer.
National End-of-Life Doula Alliance (NEDA)
In the fall of 2017, several EOL Doula Trainers joined together to create a non-profit membership organization that would support the growth of this role to be a bridge between present healthcare entities. We wanted to create a way where we could educate everyone about our role and how to utilize us and how to refer to us and what to expect from us.
The definition of an EOL Doula by NEDA is:
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, from as early as initial diagnosis through bereavement.
NEDA is growing by leaps and bounds; and doing what it can to bring some kind of unity and standards of practice among a group of very diverse people. I am honored to be a founding member of NEDA and served as first Vice President until 2018.
More On How End-of-Life Doulas Help.
Many people have told me over the years that they felt alone and felt they needed so much more support when they were going through the dying of a loved one. It is common to hear this and other statements like, “I had no idea there are people like you around to provide more support for me and my family during dying times.”
So, what does the kind of help look like from a private practitioner?
First, we will assume that the EoL Doula is knowledgeable about the end of life time, is skilled in communicating with others at this time and is offering services within their skill set. Every EOL Doula being equal in this, the variation now will depend on the person and their expertise of what they offer on “top of” their emotional support. Their “practical support” offering will differ is the bottom line.
The EOL Doula bridges services between healthcare agencies and also bridges support within hospice. They reinforce the teachings and support of the hospice. They provide a continuity when most of the hospice team must leave the family at death and bereavement support. Not every hospice has a strong bereavement service.
EOL Doulas can generally spend more time with people than present day health and death care agencies. Even though our agencies are doing fantastic work, 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 EOL Doulas bridge this gap.
Can Anyone Be an End-of-Life Doula?
I have been mentoring EoL Doulas since 2005 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 had the privilege to work with so far is doing something a little different in terms of delivery of services or hours of operations or what is being offered. No two people are serving in exactly the same way.
Most EOL Doulas are non-licensed and non-medical. But there are many who are starting with a foundation as experienced hospice physicians, chaplains, nurses, certified nursing assistants and social workers. There are people coming into this specialty from holistic and integrative medicine, energy medicine, yoga therapy, psychotherapy, massage therapy and so many other fields. And there are just as many who are coming into this who have nothing to do with healing work or healthcare; they are sales people, administrators, marketing reps, educators, hair stylists and every “day job” you can imagine.
Regardless of how a person enters this new role, it is wise to consider Death Doula Training if you are going to serve professionally. Even though it is my personal belief that a loving companion is the biggest part of this and your unique experiences and talents, there are some foundation elements everyone should have.
So, what an end-of-life doula ‘does’ really depends on their skill set and what they want to focus upon in their service.
An Example of an End-of-Life Doula in Private Practice
I'll use myself as an example. The experience of my mother’s dying is brought me into this role of wanting to serve families independently as they died. I was an experienced hospice nurse but the kind of support my mom needed as she died was not something a hospice could provide. Why? Because she did not want hospice.
There began my painful journey of getting my mom the complicated care she needed, as she died, from a healthcare system that did not have insightful palliative care (prior to hospice). This was in 2005. I knew what I knew would help her. I created a ‘team’ and we provided the care she needed. Once she died comfortably from a very aggressive cancer without one day in the hospital, I knew I needed to help others have the same—others who did NOT have a hospice RN for a daughter.
So, you may be thinking, “well, Deanna is a hospice RN, isn’t that the same thing as an EOL Doula?”
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 a hospice RN I must be trained and licensed in my state and pass rigorous standards.
As an EOL Doula to a family, because of my personal specific skill set, I can be helpful to them in the non-medical role of the EOL Doula. I can also be helpful in my RN role if they choose. They can me in my total offering of EoL Doula and RN or just EOL Doula.
Because of my background, I can 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.’ This is something that EOL Doulas can do depending on their background and comfort level. So the education and experience that a person has will determine how deep and detailed they will go in offering support. Here is where you will find your individual differences in EOL Doula support.
What is needed most at the end of life.
And to be very clear, what is needed most in most settings is loving presence and witness—not medical support. The family has that with hospice. What is needed most is a compassionate companion to journey with them and take the pressure off. Presence is everything when you are assisting the dying and their family.
Presence is deeply listening, respecting their strength, honoring their grief, and holding all of this in a spacious and compassionate way through our silence and our witnessing of them.
'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. EOL 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 EOL 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 and there are many people showing up to be a part of this task.
My hope for everyone who is 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 EOL Doula in your community to be with you as well. And that if you have a desire to be of service in this way, you will act on it.
Do you have the calling for this beautiful practice? Learn more about this beautiful role in our free 4-part mini series, "How to Serve as an End-of-Life Doula, No Matter Your Background."