In recent decades, birth doulas have played a significant role in empowering people and restoring choice around birthing options and support. Now, end-of-life doulas, sometimes called death doulas, are doing the same for families when it comes to death.

We had the opportunity to dig deeper into the role end-of-life doulas can play for the dying and their families during a difficult, often overwhelming, transition. Read this informative interview with Erin Merelli, a Death Doula and the Co-Founder of The Deathwives Collective.

What are end-of-life doulas?

End-of-life doulas are professionals who offer holistic, non-medical support to a dying person and their family. The scope of care is customized to the desires of each patient, and can include emotional and spiritual care, physical and practical care, as well as planning for the funeral and burial arrangements. End of Life Doulas might work with a family from the onset of a diagnosis all the way through until the completion of a funeral, or they may only come in to support an individual during their death journey. The objective of a death doula is to bring as much comfort and peace to the dying person and their family as is available.

What situations or people typically get the most from having a doula?

It is a gift to know that death is coming. Many families do not get this gift. There are two general "camps" of people who hire death doulas:

1. Those who know that death is sacred, and are intentionally taking action to create a space around their death - or a loved ones death. Doula's serve many purposes, including gathering community and family around the dying person. The death doula may create legacy projects with patients, or help them to mitigate disputes, or help them with their dishes, or help them pray. The range of work is wide, and the tools that the doula uses are led by the patients' wants. Our role is to honor their choices, not impose our own. It is the spirit of the work that is consistent, and that spirit is one of loving service.

2. Having a doula is very helpful when a family has little experience with death, or when they are particularly afraid of confronting it. The doula can act as a liason, supporting the family with phone calls and arrangements that may be difficult for them to make. The doula can hold a space of acceptance for the dying person and their process that the family sometimes cannot offer. In some cases, family members cannot be present for the death of a loved one, but they want to be sure that someone is there, and they hire a doula to be there in their stead.

What role can end-of-life doulas play in funeral arrangements?

Many doulas are skilled at making funeral arrangements, whether they be through a funeral home, an alternative venue, or a home funeral with the support of a home funeral guide. They can place calls on behalf of the family to gather options for local services and final disposition options. A doula can educate the family on what those options are: cremation, traditional burial, green burial, water cremation, or natural organic reduction. Each one carries a different cost, and includes a different experience for the deceased and their family, as well as for the environment. Many doulas are unilaterally skilled as ceremony officiants and can create and host custom funeral services and memorial projects with the family.

* In Colorado there is not a license specific for funeral directors. Check your state's scope of practice before taking clients.

What role can a visitation play in the grieving process?

Visitation can play a profound role in the healing process. When we visit the body of a deceased beloved, we can see that what is left is not scary. It is sad, yes, but it is not scary. It is not gross. It is the empty container that carries the spirit of a beloved, and there is power in thanking and blessing that vessel before it is gone. We see this best demonstrated in children, who will often go straight up to the body of a dead grandparent without pause. They will touch them. They will ask questions. We must remember that grief is only love that has lost its home. Grief still has an enormous amount of love to give, and it needs some place to give it. Pouring it into the visitation or services for the deceased is the most healing thing we can do when death is new and we have an abundance of grief filled love to manage.

Can you further explain how home funerals or home visitations work? Can they be done at nursing homes and other care facilities?

While Home funerals may seem like a new or progressive idea, they are as old as time itself. This is the way it was done for most of time, and the way it is still done in village cultures across the world. A home funeral can best be compared to the modern Irish wake. Ideally, the deceased has died at home. The family will take the time they need to say goodbye. A number of rituals can be done. The doula, home funeral guide, or family will cleanse and dress the body. They will keep it cool with simple means - ice packs, frozen water bottles, and techni-ice all work well. It is important to get the body into a cool space within 24 hours of death, and we recommend doing it as soon as the family is ready. The body can be kept in bed, or moved onto a massage table, or into a casket. Families can gather at the home either in a large group for a formal ceremony, or in smaller groups that come and go throughout the day, offering a more intimate space for all visitors. There is food and drink. There is a community coming together around the death to offer love, support and grief. When the services are over and the family is ready to relinquish the body, they either arrange for transport, or they load it into a pickup or van and drive it themselves. The latter will require a casket of some type. Cardboard caskets are effective and can be purchased for uner $50. At this point the body is moved to its final disposition location. That could be a cemetery, a crematory, or a water cremation facility.

It is difficult to do the same work in nursing homes and hospitals because the facility is eager to clean out the room and turn over the bed. They usually will not give the family very long to linger after a death. This is one of the reasons that we love home funerals, though. A family can bring their deceased home if they want to, take care of them as they see fit, and return them for final resting.

What brought you to this work?

Erin Merelli & Lauren Carroll, Founders of The Deathwives Collective

I don't know how far back to go, because I have had a relationship with Death for as long as I can remember. The first time I was confronted with death I was 4, and my great grandfather had passed. I remember sitting on the edge of my bed as my mom tenderly told me about it, but also giggling, because I could see him sitting right next to her.

In high school, my boyfriend, Adam, died. We had been together for 2 years, which was forever at the time. He was my dearest friend and to this day remains the healthiest relationship I have had. He was in a fatal car accident. When life went on for everyone else, it stopped for me. I skipped school to lie in the broken glass and blood at the crash site. The following year I lost 2 friends in a plane crash and 2 more to suicide. We didn't have the internet back then, so I spent my free time on the floor at the bookstore reading everything I could find on grief. I was lost in it for a long time.

I became a mom and a nurses aide at 19, and then went to college for music and business. I graduated from CU in 2007. I knew that death work would be in my future, but I didn’t know how. To be honest, I thought I would develop into a medium and talk to your dead people (and I do, but it is just one small part of the whole now). I was focused on the spiritual aspects of it, and how I could still communicate with Adam, and I went into the study of consciousness of quantum physics, which fascinates me to this day.

Fast forward a decade to the birth of my second child. I had a birth plan and was a strong self advocate for the ways in which I wanted to birth, and was met at the hospital by a militant nurse who wanted me to do it her way - not mine. After that experience I became a birth doula (through the CAPPA program). I loved my work as a labor and postpartum doula, and worked in that space for several years, until I got divorced and had to shift things in order to make more money. During this time my grandfather, who had been battling the most brutal of cancers, was dying. He was a proud man and he didn’t want his family to see him ill, so he had denied us access to loving him for the last year of his life. When he was very close to dying my father overruled him, and invited me to his home, where he had home hospice care. It was the best gift my father has ever given me.

Without thinking or trying, I began holding the space for my grandfathers death in the same way that I had done for laboring mothers. Though I was not an elder in my family, I watched as the others relaxed and allowed me to lead them. Where they had fear, I had fierce love. Where they clinched tightly to the ounces of life left inside of him, I quietly prayed for him to release what was heavy. I told him that it was okay to go.

I realized that day that the dying needed the same care the birthing did. I could write books on the similarities between the two. I began training to be a hospice volunteer, and then began visiting patients who were actively dying. Every day I would get an email of the actively dying in my area, and I would decide who to visit. I would read to them. Listen to them. Look at photos together. Rub their feet. Talk to their spouses about fear, and choices, and loss. It fed me so deeply.

Last year, Lauren Carroll and I formally formed Deathwives, and created a curriculum around deathwork. We have been offering classes on Home Funerals, Death Doulas and "Deeper Deathwork", Greif, as well as hosting community events and death cafes.

Most of the above has been affected by COVID, and we are pivoting to restructure things in such a way as to offer real and relevant help for those dying and those who love them.

What do you most want people to know about when it comes to their choices at the end of life?

We want people to know that they have choices. They do not have to go through a corporate funeral home if they don't want to. They have more legal rights than they often know, and they most certainly have more ceremonial and final disposition options than most are aware of. I want people to honor those who have died as much as we honor them in life - by creating a ceremony and a final resting place that reflects who they were and what they cared for. We ultimately want to bring families and communities into the death space, and normalize the idea it's okay to care for your own, all the way until the end.

Where can people find more resources on this topic?

You can find a list of recommended books, websites and films here: https://www.deathwives.org/resources

End-of-Life Doulas Explained