BY LOREN TALBOT, INELDA’S DIRECTOR OF PARTNERSHIPS AND COMMUNICATIONS
The death positive movement of the past decade has ushered in a new wave of death awareness and willingness to discuss and plan for end-of-life. Along with that wave has come the accession of end-of-life doulas, also known as death doulas or death companions. While the role of end-of-life doulas may be new to some, aspects of the support we offer has always been threaded through communities.
What Is an End-of-Life Doula?
INELDA defines the role of an end-of-life doula as someone who provides companionship, comfort and guidance to those planning for death, diagnosed with a terminal illness or facing imminent death. Doulas offer nonmedical holistic support encompassing emotional, spiritual and practical care. Doulas offer resources to help the dying person and their circle of care to make informed decisions in a supportive environment.
The support we offer can show up in different ways depending on the individual doula. Each training organization may offer different approaches; some doulas may focus on advanced care directives, while others sit vigil with families. Many doulas offer support with end-of-life projects (also known as legacy projects) and end-of-life and post-death planning. There is no “one way” to be a doula. In our training at the International End-of-Life Doula Association (INELDA), we have a three principle approach that teaches doulas about one’s personal self-awareness, the autonomy of the dying person and the dying process. The underlying foundation to the approach is listening. Above all, no matter what training a doula has gone through, listening is an elemental skill we offer.
There is currently no national certifying body for doulas, and even in our community there are different thoughts around if there should or should not be oversight. For some, the formalization of the field would allow for insurance coverage, more access to individuals seeking services and integration into the care continuum. For others, concerns over doulas being included via benefits and embedded in the medical field would mimic many of the problems that we see existing within healthcare today. In some cases, coverage is emerging as part of health benefits packages offered directly to employees by companies who see the need for end-of-life support.
Many researchers are turning to exploring the quantitative outcomes of working with end-of-life doulas. From this perspective, the field is new and emerging. Over the next decade, we imagine doulas embedded within the care continuum and working alongside palliative care doctors, case managers, healthcare professionals and other service providers.
Where Do End-of-Life Doulas Practice?
Just like there are many ways to be a doula, there are also many places where doulas offer services. There are traditional healthcare environments such as older adult facilities, hospice centers, within the home settings, hospitals and even funeral homes. Additionally, there are doulas who may be offering support in places such as prisons or on the streets supporting unhoused individuals. Anywhere someone dies is a place an end-of-life doula can be involved.
As death doulas become more ubiquitous, we are called to work with different care teams. As a growing workforce, we are able to help support over-taxed medical providers with non-medical needs. For example, a doula can spend additional time sitting with patients, planning for end-of-life, helping document advanced care directives, conducting life reviews, facilitating in the creation of ritual making, offering emotional and spiritual support, and more.
Depending on the environments a doula is working in, what is offered may appear different from one location to another. The role of a doula embedded in a hospice program could possibly be more limiting than a doula who has a private practice. Each care facility interrupts the role and explores how doulas can be utilized. This can be expansive, depending on what the administration and the doula dreams the role to encompass. While many doulas have multidisciplinary knowledge, there is a lot of discussion in the community about dual roles and the importance of delivering just doula support.
In some cases, doulas may just come in for vigil as the individual is actively dying, but in other settings doulas may be able to work with someone for months. As imagined, a longer time would allow for an in-depth relationship, and working with the dying person may include time for life review, end-of-life projects and establishing a longer relationship to listen and be present for the dying person and their circle of care.
Where Can I Learn More?
The field is growing, and both doulas and training organizations that train end-of-life doulas expanded following the pandemic. As a society, we were all deeply affected by the scale of deaths, and for many it emphasized the need for a more equitable and compassionate deathcare system.
As the field grows, so do the types of trainings and approaches. There are multiple directories to search for doulas and different levels of competencies. There are trainings that have hands-on components and certifications that require multiple case studies. Many individuals come to doula training after years in the medical field and wanting to “return to the reason” they originally became a medical professional. Others come into the space after experiencing a traumatic death and wanting to learn how it can be done differently. There is no one impetus to become a doula, but many of us desire to shift attitudes and approaches to end-of-life care.
Two of the largest organizations, INELDA and the National End-of-Life Doula Alliance (NEDA) have directories to help source end-of-life doulas. INELDA is a member-organization that provides trainings, peer mentoring groups, webinars for members and the public, certification through practical experience, and more. While they are members of NEDA, these organizations operate independently. NEDA is also a membership organization that acts as an umbrella organization for doula training organizations; they offer a proficiency badge, opportunities for doulas to connect and gatherings for prospective doulas to learn about training organizations. Interested parties can explore both these organizations’ directories when searching for a doula to support them.
When selecting a doula to work with, some things to consider include location, language spoken, approach and your personal connection. Some doulas also offer virtual services; this can be especially helpful to individuals in rural areas or where access can be a challenge. Similar to finding a doctor or a therapist, connect with a few doulas to see if the fit is right.
As a case manager, it can also be beneficial to know the doulas in your region and who you may want to use as a referral. Doulas can serve as unique and valuable resources for case managers with clients who are diagnosed with a serious illness or facing death.
Further Reading
Death doula working practices and models of care: the views of death doula training organizations, DMC Palliative Care, 2023.
Unbefriended, Uninvited: How End-of-Life Doulas Can Address Ethical and Procedural Gaps for Unrepresented Patients and Ensure Equal Access to the “Good Death”, Sage Journals, 2021.
Loren Talbot is INELDA’s director of communications and partnerships and an end-of-life doula based in Essex County, New Jersey. She is an advocate who deeply believes in changing systems. She has dedicated her life to creating opportunities for awareness, growth and education. Loren is a volunteer youth grief facilitator through Imagine Newark and hospice doula and volunteer at Villa Marie Claire. Her commitment to community and the environment has led her to work in multiple nonprofits focusing on waterfront access, food policy, transportation safety and affordable housing. Her work as a news photographer drove her into production and photo editing for over 20 years with national magazines and corporate clients. She holds a bachelor’s degree in sociology and photography from Marlboro College and a master’s degree in environmental urban planning from Pratt Institute.
Image credit: ISTOCK.COM/SASIRIN PAMAI