A Death doula, also known as an end-of-life doula, death midwife, or (the incredibly rad sounding) death walker, is someone who accompanies and supports people who are preparing for and navigating death. Death doulas can provide comfort, education, resources, companionship, and non-medical assistance to both the dying person and their loved ones. Although humans have held and cared for each other during death for centuries, death has become more medicalized and less of a family or cultural event in some societies, including America. Many people and families desire extra support, understanding, and loving presence during this final transition, and an end-of-life doula can be an excellent addition to someone’s care team.
Below are some of the many ways that end-of-life doulas can offer support to a dying person and their people.
Speaking Openly About Dying & Making Meaning of Life
Death is one of those topics that many folks struggle to talk about openly. Thinking and talking about death, especially your own or the death of someone you love, can sometimes elicit feelings of fear, overwhelm, anxiety, and uncertainty. Not everyone feels prepared to dive in and candidly discuss someone’s experience as their health declines. End-of-life doulas are equipped with deep active listening skills, knowledge, and openness to discuss the various facets of life and death, including processing the weight of a terminal illness or exploring the complexity of the dying person’s life experiences. For those who would like to reflect on their life, death doulas can facilitate conversations around meaning, regret, values, missed opportunities, and legacy. Even if you’re not super interested in finding meaning but you want to be able to talk about how afraid you are, doulas will sit with you in fear and uncertainty so you don’t have to sit in it alone.
Aiding in End-of-Life Planning
Have you ever spent time imagining what your final days might feel like? Not everyone gets the opportunity to choose where or how their death will take place. But for those who have the option to make a plan, doulas can help the dying person get clarity on how they want their final days to look. This could include discussing where you want to be, what you want to see, hear, and smell, who is allowed in your space, and how you want to be cared for and tended to. Maybe you’d like to be at home, nestled under a handmade quilt, with a breeze coming in through the open window and the sounds of your friends communing in the next room.
Death doulas can also help folks create or revisit their advance care directives. These legal documents can contain information about where the person wants to die (at home, in a hospital setting, etc.), how they want to approach medicating their symptoms, whether they will want a feeding tube or if they want to stop eating, and other choices people want to have honored regarding their medical care once they are unable to communicate their needs.
Cultivating Rituals & Legacy Work
Rituals serve many purposes, including helping us to release, to connect, or to remember. Sometimes they encourage us to be present and bear witness to what is happening in this very moment. Sometimes they help us prepare for or ride the wave of a difficult experience. When a person is dying, rituals can help them find comfort or clarity. Loved ones might participate in rituals to help them honor the dying person or feel connected to them. Death doulas can help both the dying person and their family & friends create and perform rituals throughout the last months or days of their life, during active dying, or following the death. Participating in a ritual immediately following someone’s death can be particularly meaningful, as it acknowledges and honors the significant change that has just taken place. Rituals can come from family traditions, and cultural values, or can be incredibly unique to the dying person.
In addition to gathering information about end-of-life planning, listening to the dying person’s life events, collaborating on meaning-making, and discussing rituals, death doulas can work with the dying person and their loved ones to create a legacy project. A legacy project is a way to secure and observe parts of a person’s history and identify how their story will continue to impact others, even after death. Legacy projects can range from letter writing to a yearly celebratory ritual to planting trees, and they can be as simple or as unconventional as the dying person or their family wishes.
Providing Education and Resources
Doulas can provide information about the signs and symptoms of the dying process – this includes changes in breathing patterns, skin tone and texture, and mobility. Doulas who have received formal training are taught about the early signs (months to weeks) to signs of imminent death (hours to final moments) and can guide family members and loved ones as they witness the dying person’s transition into death. Doulas can also connect the dying person and their loved ones to various community resources, including mental health services, hospice care, grief counseling, funeral homes and burial sites, support groups, or financial assistance.
Providing Non-Medical Physical Care & Respite Care
Because death doulas are not medical providers, they cannot administer medications or provide physical care that requires clinical training. End-of-life doulas can provide basic physical care, such as helping reposition the dying person to increase physical comfort, helping keep the mouth and lips clean and moist, and applying a cool or warm compress. Doulas may also provide respite so caregivers can pause to rest and tend to their own needs.
Accompanying the Person Through Active Dying
Some death doulas commit to being with the dying person for the actual act of dying. During imminent death, or the final hours and minutes of life, the doula can provide much-needed emotional support, they will participate in the simple but very meaningful act of bearing witness, they can alert family and loved ones who want to be present for the final moments, and they can help advocate for the dying person’s needs and desires to be met, as outlined in an advance care directive or decided-upon rituals. Not everyone has people to be with them in their final moments, so a death doula can be a calming and loving presence for someone who doesn’t want to die alone.
Facilitating Early Grief Work & Reprocessing
After the person has died, the family and friends who were present for the death may want or need to discuss their memories, feelings, or experiences of the dying process or the death itself, which is referred to as reprocessing. Death doulas create space for loved ones to engage in storytelling as they process their thoughts, sensations, and emotions. They can provide a new perspective while also honoring the experiences of family members and friends. The doula can also conduct a ritual, start or continue legacy work with the family, supply education and resources around grief, and engage in reflection on the process.
Death is an emotionally complicated and logistically overwhelming event. Sometimes we are given time to prepare for it, sometimes it is incredibly unexpected. Regardless of the timing, it is heartbreaking. It can also be a meaningful and empowering experience. The hope for all humans is the possibility of a good death, a death where you get to have informed agency over how you are cared for and tended to in your final moments. Death doulas are compassionate, caring, and knowledgeable people outside of your family system who will collaborate with you, advocate for you, and honor you every step of the way.