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Supporting End-of-Life Care: Death Doulas, Death Cafes, & Grief Resources: What is a Death Doula?

What is a Death Doula?

Image created by Armella Leung for Stat https://www.statnews.com/2016/04/07/death-doulas-end-of-life/ 

What is a Death Doula?

A death doula is a NON-MEDICAL support professional that provides holistic, physical, emotional, and spiritual care for the dying and their loved ones: before, during, and after death. A death doula also acts as a guide who supports families and their dying loved ones as they go through the death experience. 

While the role has "unofficially" been around for thousands of years, it's a relatively new professional field, and has seen a rise in popularity (and media coverage) in the past few years, especially through the COVID-19 pandemic.  

The role has been termed “the missing piece of the hospice mission… and a valuable supplement to end of life care" (Yoong, et al., 2022, p. 795 - see Reference tab).

 

Death doulas can go by a number of different names, some of which are: 

  • End of Life Doula (EOLD), Death Doula, Dying Guide, Death Coach, Death-walker, Mourning Doula, DoulaGiver (Attributed to Suzanne O'Brien), Death Care Specialist, End of Life Specialist, Community Death Care Advocate, Death Midwife, Soul Midwife. Transition Doula, Thana-Doula, Eldercare Doula, Palliative Care Doula, Sacred Passage Doula

 

Death Doulas offer a number of different services and specialties, which are often dependent on several criteria: 1) the person(s) they are serving (the dying/ their loved ones/ the dying AND their loved ones) and 2) the individual stage of the dying process that the person(s) is in. 

Generally the event of dying can be categorized in three phases. Care needs for the person(s) involved are different based upon each of these stages: pre-death, active dying, post-death.

Below are just SOME of the roles that a death doula can offer during each of these phases:

 

  • Pre-death: 

    • an advocate for the dying and educating on advance directives and other end-of-life documents
    • a facilitator to assist with funeral planning
    • a translator to help the family understand difficult medical language
    • assisting the dying with legacy projects to help their loved ones cope after they have died
    • act as additional eyes & ears to communicate with the Hospice team for the care needs of the dying and their loved ones
    • a companion for hospital visits and for general listening
    • a resource guide to offer assistance to families to locate help with meals, housekeeping, or assistance in creating a care-taking schedule for family members
    • a calm & unbiased mediator to assist loved ones with any hard conversations that still need to be shared with the dying person before entering the active dying phase. 
    • a community educator, to teach at churches, community centers, senior centers etc... in the role of a death cafe coordinator, education on what death doulas can offer, how advanced directives can make death a much easier process, etc... 

 

  • Active dying: 

    • an advocate for the dying and their wishes (sometimes loved ones do not want the same wishes as the dying, there must be an advocate for the dying person individually)
    • companion & active listener
    • sitting vigil (offering respite to allow loved ones to rest during the transition period of active dying)
    • compassionate & calming presence (a death doula understands what's coming, and knows the physical signs of active dying, and they can reassure family members what's happening is normal and part of the dying process) 
    • a guide to help loved ones say goodbye to the dying
    • a helper to provide practical support and non-medical comfort care such assistance with repositioning, changing bedsheets, and other comfort care measures etc.. 
    • provide solace, spiritual support, gentle/compassionate touch, Reiki, meditation, aromatherapy, etc.. to the dying and their loved ones

 

  • Post-death: 

    • A coordinator/communicator between the funeral home and loved ones for services desired
    • A resource person to help guide loved ones to community resources, care of the body (dependent on state/country laws)
    • Assistant with after-death paperwork, meal train, be a voice for the loved ones and their families/friends as they plan arrangements
    • Offer bereavement/grief/spiritual support as loved ones continue working through the journey of mourning and grief

Important Death Doula Organizations & Code of Ethics

picture of a screenshot of the NEDA homepage 

What is NEDA? 

While currently there is not a governing/regulating body over Death Doulas in the United States, there is an organization called NEDA, the National End-of-Life Doula Alliance, the ONLY NON-PROFIT professional membership group for death doulas. NEDA has a governing board made up of experts in end-of-life care and pioneers in the field of death doulaship.  

NEDA not only offers a Doula Model of Care and Scope of Practice, which sets professional practice standards for Death Doulas, it also offers a microcredential, a test that a doula can take.

IF the doula passes the NEDA Proficiency Exam (meeting a minimum standard) it signifies that the doula has received training and comprehends a core set of death doula competencies, a scope of practice and code of ethics, and maintains a high standard of professionalism. 

When a doula passes this microcredential, they can list their name, their profession as "Death Doula," followed by a comma and the term "NEDA Proficient".

For example: Carrie Forbes, MLS, Death Doula, NEDA Proficient.

All Death Doulas, no matter what training they have completed OR the term they use for their end-of-life care profession, can pay for yearly membership to be listed in the NEDA online directory, and can apply to take the NEDA Proficiency exam. 

**INELDA (International End of Life Doula Association) is another Doula membership organization that also offers it's own Doula Model of Care, Doula Scope of Practice, and their own credentialing. INELDA is a for-profit international organization that also has  it's own a training certification program and they ONLY allow death doulas who have taken an INELDA training to be listed on their site. 

Where can I find a Death Doula?

Where can I find a Death Doula? 

What is a Death Doula?

Image from: https://letsreimagine.org/1754/what-is-a-death-doula

Below are several Death Doula Directories which can be searched by name, state, etc...

Most are membership organizations. Please be aware that NEDA (listed above) is the only (U.S. based) national membership organization currently that offers a microcredential proficiency exam, a code of ethics, and Doula standards of practice. 

There is also an article listed below from NEDA that provides excellent tips on how to find and evaluate a Death Doula that best fits your situation. Additional things to consider when trying find a death doula: look for Google reviews on individual websites or Facebook pages, social media visibility, and transparency about their education & experience. 

Where can I train to become a Death Doula?

Where can I train to become a death doula?

Image from https://tinyurl.com/2tp84st8

 

There are many, MANY options when it comes to death doula training. When seeking a Death Doula training program, keep these criteria and thoughts in mind: 

 

  • What does the program cost? 

  • Does the program estimate how much time it will take to complete? 

  • Does the program fit your learning style?

    • (Online? In person? Is there a set deadline to finish?) 
  • Does the program require bed-side clinical hours, working with death doula clients?

    • (Competent programs will require anywhere from 16-60+ clinical hours.) 
  • Do the instructors in the program have a resume/CV sharing their work experience in the end-of-life field? 

  • Does the program have a skills/knowledge exam that a student MUST meet a certain standard/grade to PASS?

  • Does the program mention teaching the skills/knowledge necessary to pass the NEDA Proficiency Exam? 

  • Does the program offer transparency in contacting instructors or support staff if you need assistance? 

  • Does the program have an active social media presence that you can follow and interact with? 

 

We can't list all possible programs here, but here is a list of some of the most well-known courses: 

The "Good Death" Movement

The "Good Death" Movement

How to accept the death

Image from: https://tinyurl.com/5fyua3tb

For most people, just thinking about the term "death" can be very uncomfortable. It's scary to think about ourselves or our loved ones dying. Yet, it's also truly the one thing that all living beings have in common.

We all die.

Depending on a person's faith or spirituality, death can mean different things. For some it's a final end, for other's it's seen as a passage for the soul to on to another place. 

Regardless of what a person thinks of death, we can find ways to help remove the negative stigma surrounding death. There are fascinating options for learning more about how to face death and dying today. You can learn about "Death Cafes" (see the tab at the top of this page), or you can visit the links below to learn more about "The Good Death Movement": 

For example, did you know that Hospice is part of The Good Death Movement? To learn more visit the links below: 

Carrie Forbes, MLS

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Carrie Forbes
She/Her/Hers
Contact:
Laupus Library
Room 2518
East Carolina University
600 Moye Blvd.
Greenville, NC 27834
252-744-2217 -OR- 252-689-8734 (TEXT)
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Subjects: Nursing