National Initiatives for End of Life Doulas

In photo from left to right: Suzanne O'Brien, Deanna Cochran, Edo Banach, Patty Burgess.

This has truly been an eventful year! End of Life Doulas have taken a national and international stage with the initiative to unite doulas and standardize practice and goals of care. We are the new kids on the block for end of life support to families and established organizations who serve those with advanced illness and the dying. 

So much has happened! Articles in major press, International Conferences with leading end of life educators, blending established teachers with the new (example: 1st annual International Death Doula Conference in Maui), end of life doula certificate programs being established around the world and also very important movement within the USA.

Prior to presenting with other amazing teachers this year at the Death Doula Conference on Maui, I called leadership within our national hospice trade organization, the National Hospice and Palliative Care Organization (NHPCO), to ask if they'd be interested in talking with me and other end of life doula trainers and leaders on how we can be helpful to hospices and families. My main question is, "how can end of life doulas support hospices and families and help bridge the gaps in care that we all see and feel?"

So much has come out of this initial conversation in March of this year. Several end of life doula trainers were invited to the discussion and from that initial meeting, those wanting the same end result of unity within the end of life doula movement have joined together to form an alliance of end of life doulas. We have named it the National End of Life Doula Alliance (NEDA).

NEDA's intention is to form a collective of trainers and practitioners who are all truly represented, regardless of where they received their end of life doula training. We will be an organization that truly represents ALL end of life doulas, right now the only one representing a variety of programs, not just one. Presently, all organizations only represent their own created training. We are working out the initial particulars as you would imagine: standards of practice, code of ethics, values, etc. 

As soon as the founding members create this initial founding piece (it would be too unwieldy to have too many people at this juncture), we will open up membership to all trainers and practitioners who align with our values in strong, compassionate, and the highest of excellence in standards and service. We want understanding of the role as well. We want to support all those who are in the trenches and working to make permanent change in the way we are dying here in the USA, and around the world. We have a lot to do!

Also, we are in continued discussions with the NHPCO on how it would best serve the public to proceed next. We are coming into historic times. More people will be dying in the next 30 years than we feel we can adequately handle by all accounts of experts in the field and by various estimations in the press. End of life doulas will be another support option for people who may not have quality support otherwise. 

More and more people are waking up to their calling to serve others at the end of life. They are volunteering at hospices and other community organizations. They are creating innovative programs within the places they work and in their communities. They are creating private practices and collectives. So much is happening in the supportive end of life community to ensure that if you would like additional support, there will be someone there to take your hand. Right now, unfortunately, there is not.

I get people asking me almost daily for an end of life doula to help them somewhere in the world. Sometimes there is one doula I can connect them with, but many times the call goes unanswered. Very rarely are there several to offer so that the person has a choice in doulas. 

One step at a time! We are growing into a known, trusted, reliable, loving, knowledgeable guide at a frightening time for many people. We want to be a part of shifting this culture into one of peaceful engagement. We may not be happy we are dying, but we are prepared. We are making our choices known and we are teaching our loved ones around us how to die well, not leaving a legacy of fear and bad memories.