The National End-of-Life Doula Alliance

Answering the Call for More Effective Non-Medical Support at the End of Life.

National End-of-Life Doula Alliance Highlights Help Beyond Hospice

The National End-of-Life Doula Alliance (NEDA), a non-profit 501c6 membership organization dedicated to supporting end-of-life doulas (EOLDs) and those they serve, understands that caring for people at the end of life is complicated. The experience can be, among other things, extremely confusing, grief-filled, frightening, and exhausting. Put simply, in our culture, most people are totally unprepared to deal with what end of life care asks of them. To address these challenges, NEDA is stepping forward to identify where unmet needs exist and work to meet them. Led by a dedicated board of directors comprised of expert practitioners, trainers, and natural death-care pioneers from throughout the US (see sidebar), NEDA’s ultimate goal is to inspire positive, creative changes in the way dying and death is experienced in America.

For those who are eligible, hospice can offer much-needed support to the terminally ill and their families. But frequently, people are already experiencing serious difficulties before they seek assistance from hospice. Because it’s funded and regulated by Medicare and other insurance plans, there are restrictions that limit access to hospice, especially for those who are too young, or not yet sick enough to meet eligibility guidelines. Unless a patient is admitted to an inpatient facility, hospice programs aren’t designed to offer round-the-clock care. Most hospice patients reside in their own homes, where nurses, nursing aids, and others make intermittent scheduled visits. Between visits, care must be provided by family members and friends who are often unfamiliar with the dying process and therefore unprepared to address the numerous challenges that may arise.

Recognizing and responding to the fact that existing medical and social-care systems can’t do everything, there is a new, rapidly growing movement made up of specially trained non-medical providers who offer extra help at the end of life. Much like a midwife or birth doula does with the birthing process, an EOLD provides support through the dying process, recognizing it as a natural and important part of life.

Sometimes referred to as “end-of-life coaches, death midwifes, or transition guides, EOLDs provide a broad range of holistic support services that complement and supplement what families, friends, and hospice providers do. End-of-life doulas come from rich and varied backgrounds. Some are formally trained, some are self-taught; some are new to the field, and some have been serving their communities and families for many years. Some charge for their services while others work as volunteers.

An EOLD can serve as a kind of project manager, coordinating care and services requested and required by the client and/or family—before, during, and after death. Specific offerings vary by individual doula—some concentrate their focus on specific issues and tasks, such as personal death awareness education, advance care planning, or life review—others offer a broad spectrum of services that include:

• Serving as a liaison between client/family or patient advocate
• Coordinating community resources and/or medical personnel
• Providing practical, emotional, social, psychological, and spiritual support
• Problem solving and logistical assistance
• Advance care planning
• Helping people get their affairs in order and saying good-bye
• Life review and legacy work
• Planning funerals and memorial services
• Educating, guiding, and coaching
• Providing respite, companionship, and sitting vigil
• Assisting with household tasks
• Facilitating conversations with loved ones
• Performing ritual and ceremonies and acting as celebrant
• Facilitating guided imagery, prayer, and meditation
• Offering grief support

Historically, up until the 19^th century, friends, neighbors, or members of the church completed all these tasks by assisting families whose loved ones who were dying in the home. In the 20^th century, however, dying became a “medical event”. Although these tasks did not disappear completely, independent death-care workers became much less visible in the mainstream culture.

But times are changing. More recently, there’s been a pronounced resurgence in the field, and requests for EOLD support have increased dramatically. As the population ages (approximately 10,000 people turn 65 each day in the US), more and more elders, as well as those with life-limiting illness, are recognizing the urgent need to become more aware and prepared for the end of life.

In response to this growing demand, new initiatives are emerging that encourage people to consider the role of EOLD as a vocation. Numerous training programs are being offered, each with their individual strengths, philosophies, and teaching styles. Facilitated both by private individuals as well as renowned educational institutions, they present a large variety of opportunities for people to become educated about and involved in the field.

One of the main reasons that NEDA exists is because of the need for a reliable central source of information about EOLDs. Our group believes strongly that as more people become aware of the need for and benefit of EOLD support, they’ll want assurance that all EOLDs possess certain fundamental knowledge and skills. For people to better understand and embrace the work EOLDs do, there needs to be a basic level of continuity and consistency that defines our scope of practice. Although certificates of course completion are often awarded by training entities, the profession is currently unregulated. EOLDs are not eligible for licensure or credentialing by a governmental, third-party, or academic agency or board at this time.

As a result, NEDA has created a proficiency assessment process that measures general knowledge in four areas of core competency: communication and interpersonal skills; professionalism, technical skills, and values and ethics. In addition, it has established Standards of Practice and Code of Conduct guidelines for ethical, professional EOLD practice. A directory of NEDA members is also available on the organization’s website.

NEDA is the primary resource for the most comprehensive, accurate, and up-to-date information about the field. Our goal is to create positive, creative changes in the way people die by:

• promoting the important role end-of-life doulas play in end-of-life care

• offering learning and networking opportunities via our website, directories, newsletters, social media, webinars, and events

• educating related professionals and the public to end-of-life doula service

• promoting optimum conditions under which end-of-life doulas serve

• establishing proficiency measures, core competencies and practical guidelines that help EOLDs aspire to the highest standards in their work.

For more information about NEDA, please visit: www.nedalliance.org, or https://www.facebook.com/national.end.of.life.doula.alliance/