Deathwives Founders: Death Doulas Fill End-of-Life Care Gaps, Ease Strain on Hospice Staff

More people are stepping into death doula work, according to founders of the Colorado-based organization Deathwives. Many come striving for change after witnessing loved ones receive poor end-of-life care or enduring bereavement without support.

A death doula is a non-medical provider trained to care for a terminally ill person and their family physically, emotionally and spiritually during the process of death. They facilitate conversations regarding the dying process, discuss advance care planning, hospice election and advocate the patient’s wishes around ceremony, memorialization and disposition.

Death doulas also serve as patient advocates and offer respite to caregivers as well as logistical support with tasks like estate and financial planning or funeral services, said Deathwives Founders Lauren Carroll and Erin Merelli.

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Carroll and Merelli founded Deathwives in 2019 to assist families facing the death of a loved one. In time, the organization expanded to include the virtual Deathfolx platform, its Deathschool program, and an online grief community.

Hospice News recently sat down with Carroll and Merelli to discuss the role of death doulas in the end-of-life space, the support they offer clients, and how they can coordinate with hospice providers.

How can death doulas help to fill gaps in end-of-life care? What areas can death doulas offer hospices the most support?

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Carroll: Since we’ve both been hospice volunteers, we knew that hospices are only capable of spending so much time with each person and their loved ones. Nurses and social workers are especially stretched thin. We saw families just needing extra support, whether that was us just coming to sit with them and have conversations, walk them through the different stages of dying, or tie them to death services. Death doulas don’t take away but add to that support.

The most positive part about all of our work is that in many cases, it leads to a hospice patient and their family having a better overall experience. Death doulas really open the door to what comes during and after the end of life.

Merelli: We wanted to bridge the gap to death. It’s the emotional, psychological and spiritual support, along with connections to financial and practical resource support. There’s definitely a bedside element to doulaship that can help fill in gaps of hospice staff time, as well as ease caregiver burden.

Death doulas can help provide that respite care with a break for families and build support there. It’s also an opportunity to advocate patient needs to hospice staff by sharing information learned during sessions. It’s a benefit that we give and try to work with providers on expanding. It’s working together to give that powerful positive end-of-life experience.

Deathwives was formed in 2019. Tell me more about what led to its launch and the type of services you provide.

Merelli: I got into doulaship as a birth doula in 2009. After my grandfather died with at-home hospice care, I thought the things I was doing in the birth world could be translated to the death space. I started volunteering in hospice, and when I met Lauren I was planning weddings. We both saw a need to teach people and empower families before they are at a crisis point. We wanted to empower them with information before they were in the midst of dealing with death.

Carroll: We met while I was teaching a workshop. We have both been hospice volunteers. When I was a funeral director, I saw a real problem of grieving families coming to me with issues and misunderstandings around the hospice care their loved ones received. Their grief was compounded by not having all of the information about what hospice actually is, and also the options they had in playing a more active role in the dying process. Our goal was to change that and educate communities and families about their options.

Why is it important for more people to step into death doula work?

Merelli: It’s about honoring a life in a way that’s meaningful to that person and giving their family assistance as well.

Many people don’t know the full scope of options they have in their states around cremation or burial, or that their memorial or funeral can be anything they want it to be.

They don’t have to go with a traditional six-foot burial, for example. They can choose a natural three-foot burial. Depending on where they are, they can choose a fire or water cremation.

They also might not understand the protocols and rules around a loved ones’ ashes or remains. Disposition and memorial services are just one tie we make. There are several other areas to explore, and we encourage death doulas to find their niche and go with it.

Carroll: This work has a legacy to it — really empowering us to be able to see life and death in a new way. We can’t take away dying, but we can have it be less of a fearful process. We can clear the cobwebs free around dying with death doulas who can help people pass with peace.

Are you seeing demand growing for death doula training?

Carroll: We started locally in Colorado Springs and Denver, but now we teach people all over the world. We educate and train death doulas in a wide variety of topics and also make informational online content for communities.

We’ve had a lot of people come to us and say they wish they had known about death doulas before a loss. We want to be a place not just for professionals, but the average person wanting to know more and be that support in their own families and communities.

Merelli: Our growth has been largely organic, so far much by word-of-mouth. We work with local providers so far, and are building connections in the death industry space. The demand for our services and people coming to us seeking death doula training has been quite huge.

Both our community and professional education classes have been at capacity. We’re training death doulas as fast, efficiently and smoothly as possible. But it’s not a one-size fits all approach, there’s a lot of complexity, layers and scope of death doulaship.

What are the main forces that drive them towards this line of work?

Merelli: A commonality among most death workers is that they had an experience with dying that was profound and impactful for them. For some it was incredibly positive. But for many, deaths were not nearly that peaceful.

Our question was, what’s the variable there? What is unresolved in that experience? What’s going on in the ‘in between’ before someone dies?

For Lauren and I, we recognized a real lapse in coverage when it came to death education. Even doctors and nurses often had a limited understanding of it outside of hospice that crippled people with a negative experience of death.

Carroll: Additionally, we hear pretty regularly from clients seeking our services that they aren’t religious or spiritual and that was something prohibiting them from getting really good end-of-life care.

They didn’t differentiate what hospice chaplains were or how they provide support, and so death doulas can be a really neutral, warm, educated and trauma-informed provider that creates a peaceful death experience and steps over that wall of care.

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