the History & evolution of the
​End-of-life doula role

[Pictured from Left to Right]: The hospice movement began in the late 1960's (Dame Cicely Saunders, founder of the Modern Hospice Movement) → A birth doula, Phyllis Farley, attended an end-of-life seminar at Shira Ruskay Center 1998 → this led to development of 'Doulas to Accompany and Support' Program in 2001 → First hospice to develop an end-of-life doula program in NYC → Quality of Life Care was created in 2005 providing end-of-life doula services and in 2010 developed the premier End-of-Life Doula Certificate Program 'Accompanying the Dying'  → explosion of the role!

So much has contributed to the widespread present day acceptance of the End-of-Life Doula role.

​Above are pictured key beginnings. Before, during, and after the times marked above, there are many people that made things happen in their own communities, calling themselves various titles, all working towards the same thing: empowering people at the end of life in choice of medical treatments, dying, and funeral options.

And, we definitely need to give this doula evolution some context; not doing that is short-sighted. Below is some of the groundwork for what we are able to do today.

These are just some of those who contributed to bringing care for the dying and their families to the forefront of the public's consciousness. From that came new roles in health and death care, and the creation of advocates for the time periods of serious illness, dying, death, and after death.

Listed in no particular order, consider: ​

• The Association for Death Education and Awareness (ADEC) since the 1970's.
• The trailblazing work of Roshi Joan Halifax, Ram Dass, Sogyal Rinpoche, Frank Ostaseski, the Levines, and many others since the 1970's.
• The work of all the people bringing forth the option of home funerals and creating the National Home Funeral Alliance.
• The home birth movement, which opened up the idea that the natural process of birth could be handled safely and, most of the time, in the comfort of one's home. It was a step in de-medicalizing this sacred experience and inviting people to look at the the possibility of de-medicalizing death as well.  
• From the home birth movement came people's growing desire of wanting non-medical support; this fueled the birth doula movement, which preceded death doulas by around 20 years. It set the framework for people to even understand the concept of the end-of-life doula role. This first "connection" that we know of is what happened when Phyllis Farley, philanthropist in the birth doula movement, went to an end-of-life conference at the Jewish Community Center in 1998.
• Growing movement of non-hospice palliative care as an answer to the tremendous suffering of people as they decline towards their death. Many books have been written about this over the years from physicians on the front lines as people struggle with advance illness. The first one of its kind came from Dr. Ira Byock in early 1990s. As wonderful as our healthcare system is, there are many gaps in care, especially at the end of life. As end-of-life awareness has grown, this led naturally to non-medical advocates to support families and help them get what they need. This is another great set-up for the end-of-life doula.

​All of these "movements" above (not an exhaustive list) contributed to the development of bringing peace and possibilities to people's lives as they live and die with serious illness. And these people and organizations contributed in major ways to the choices and awareness we have today and to the development of the end-of-life doula role as we know it and as it continues to evolve. There are trailblazers in other countries that have been tirelessly clearing a path as well.

The next biggest contribution to what is going on today is the "Death Cafe," which began in 2011 by Jon Underwood. A Death Cafe is a gathering of people who meet up in a nonthreatening environment (they have coffee, eat cake, and talk about death). Shortly thereafter, many "talk about death" platforms were created and many amazing people, authors, and thought leaders have joined the scene, especially since 2016. Now, search the term 'death doula' and you will find hundreds of private practice doulas, collectives, news articles, initiatives, organizations, and trainings. We are on the map!

The first End-of-Life Doula Certificate Program in the United States was developed by Deanna Cochran, RN, in response to a flood of inquiries over the years about her own professional end-of-life doula practice. She began to serve in this capacity in 2005 after the death of her mother. This was the first time a certificate program which included laypeople, as well as healthcare professionals, was available.

There is no International, National, or State Organization that requires Board Certification in our end-of-life doula field in the United States or any other country at this time.  The creation of a Board requiring licensure (like physicians or RNs must do) is unlikely as the end-of-life doula role is a non-medical one. Creating a Board is a strict process that takes many people's hard work and years to form. It would involve components from a variety of of healthcare disciplines as well as leading end-of-life professionals. This is unlikely to happen as, again, we are a non-medical role. The birth doulas do not even have a Board for their role and they care for babies! It would be an enormous undertaking. Most in the field are not sure this would be beneficial for anyone at this time.
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However, we do have a nonprofit membership organization, the National End-of-Life Doula Alliance, NEDA, which has set the standard for professional end-of-life doulas and continues to lead as this role evolves. It was through the hard work of several End-of-Life Doula Trainers & Activists that NEDA was founded in 2017. 

Also, in February 2018, The National Hospice and Palliative Care Organization invited end-of-life doulas to the table. Deanna received a phone call from then Director of Governance and Board Relations within the NHPCO, Beth Fells, inviting end-of-life doulas to educate member hospice and palliative care organizations about what end-of-life doulas are and how to utilize us. The End-of-Life Doula Advisory Council was born. John Mastrojohn, COO of NHPCO at the time, saw the potential of this new group of service providers. Had he not been the visionary that he was, the Council may never have come into being. We owe a lot to him. 

The inaugural meeting of the NHPCO End-of-Life Doula Advisory Council was in April 2018. End-of-life Doulas are now recognized by mainstream healthcare organizations and it is only a matter of time before end-of-life doulas are known just like the birth doulas are now. ​

   It is beyond anything I could have imagined that our oldest and largest hospice trade organization would recognize end-of-life doulas on this scale. This is one of the single most important developments in our history and the pinnacle of my career to have played a part in it.

Anyone can do this service as it is a human, loving witness and presence. Some feel inspired to be the go-to person for their circles of family, friends and colleagues and some feel inspired to volunteer and some to professional service. Regardless of how you want to be of service at the end of life, there is a place for you, a community for you and support for you. If you choose to serve professionally, all that I have described is what is giving you the platform you have today.

Those of you that follow will create even more going forward as expansion is the nature of the human experience.

You could practice on your own, but why would you want to? Lets join together and support our families and hospices in community.
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​We are stronger together.