What is a ‘Death Doula’?

by Rebecca Roberts Galloway | Feb 18, 2020

You may have heard the term “death doula” in recent years and intuitively understood that it was a growing profession of dedicated people who wanted to help the dying and their families with their end-of-life care. When women began to use birth doulas and midwives, their advocacy helped make changes in how hospitals dealt with pregnancy and birth. Similarly, “death doulas” work in the midst of a changing landscape around death care. But as a relatively new concept (though admittedly with ancient roots), there can be some misconceptions about what the role does and does not do for clients. We reached out to Portland’s Evening Star End-of-Life Doula Services’ Deanna Hagy and Maryann Giunta to learn more about what support looks like for patients and families at life’s end.

What does the word doula mean?

The word “doula” is Greek in origin. We use it in the U.S. to mean “one who serves.” The terms death doula and end-of-life doula are interchangeable.

What does a ‘doula’ do for patients and families?

End-of-life doulas provide non-medical, holistic death care education, emotional support, role-modeling and resources. Whether healthy and planning, newly diagnosed with a life-limiting illness, or nearing end of life, we meet folks where they are and provide whatever unique supports are needed by that person at that time.

We empower clients and families by sharing information and knowledge that helps them make informed choices based on their values and priorities. This can lead to them feeling more in control and having an end of life experience that is more aligned with who they are.

We encourage open and honest conversation with loved ones and believe that emotional healing can happen until the last breath. The tools and conversations we engage in with people help to reduce the existential and emotional distress around death & dying that is so commonplace in a death-avoidant culture.

What is the most common misunderstanding about your profession?

People often think we are only available during the active dying period. In fact, we are available to any adult who wants to plan for their death, whether they are ill or not.

People also often ask if what we do is “like hospice.” We are a complement to hospice. Engaging with an end-of-life doula at diagnosis (often well before entering hospice) allows you to have one provider that knows your values through your entire medical

journey. Your medical team may shift, but your end-of-life doula will be with you through every change.

What is a vigil plan?

A vigil is the time when family and friends hold space for and tend to a person who is actively dying. A Vigil Plan is a document that outlines specific ways a dying person wants to be engaged with once they can no longer speak for themselves. This is a flexible document that can be created based on what would comfort a person normally. Things like music, the aesthetics of the room, how they want to be touched or not, if they’d like aromatherapy – things that engage the senses. A vigil plan can be helpful to visitors and caregivers as it allows them to know how to show up in that space for the person who is dying.

What backgrounds bring people to work in your field?

Though they come from many backgrounds, we’re seeing a common thread in the end-of-life doula seekers we meet. They’ve had an experience where they felt very alive while supporting someone who is dying. For those of us craving true human connection, learning how to be with the dying informs how we live each day. At a fundamental level, the path to a better death relies on living a connected, open, in-the-moment life. Some get to have time to prepare for that final breath. Others don’t. How challenging the after-period is for those left behind is informed by how you live RIGHT NOW.

How can your doulas help organize us to be ready for death?

As educators, we’ll be checking in with you emotionally and organizationally at every visit. Once we know what’s important to you we can support you in preparation. Want to die at home? Curious about a living memorial? Want to limit relational stress between loved ones?

We help you organize by: Building trust, exploring immediate concerns, identifying ways to leave a legacy and creating an end-of-life plan. Education, empowerment and stress relief all lead to a dying experience that has room for love, living in the moment, and healing.

Can I use a “Death Doula” while in hospice care?

Yes. The two services are not the same, though both are focused on providing comfort at life’s end. End-of-life doulas support emotional health by guiding the dying in the creation of a values driven vigil plan, bringing focus to legacy work, educating about choices and assistance creating the support team. Hospice help will be more centered on the medical care of your loved one, with access to nurses, social workers, chaplains and bath aids.

If you are interested in learning more about Evening Star, you can find more information on their website.

Photo by Di Maitland