Death is not simply the end of living; it is part of living. Whether it is coming to terms with one’s own death or processing a loved one’s end of life, all humans encounter death. Yet in many places, especially in the United States, death continues to be a relatively taboo subject for most people. We do not speak openly about our own death, and tend to avoid the subject even when someone we know is sick and likely dying. We will talk about everything but death. Yet it is as death approaches that some people do most of their most conscious living. When a person realizes their death is near, they begin to reflect on their lives, the legacy they will or will not leave behind, making things right with friends and loved ones, and working through the spiritual and emotional aspects of death.
When faced with the imminent death of a loved one—especially after a long illness—family members also begin to process what is next. They may have spent days, weeks or even years caring for the sick and dying; being so focused on the now, they have not thought about what is next. Having a conversation about a loved one’s death before it happens allows them to begin to process their future. Having an open conversation about what their loved one wants, may help to lessen stress, relieve guilt and allow them to create their own plan for living after the death.
People who are in the final stages of life often start to feel useless. Because they are less active, they are treated like children and may feel excluded because they cannot participate in activities like they used to. There is a loss of control, autonomy and a feeling that they are just waiting with nothing else to do. For loved ones, there may be awkwardness about being around the person and a lack of knowledge or confidence about what to say and do. Dying can create a tense situation for all involved. Having an open conversation about death can bring about understanding, compassion and empathy; it can change the experience.
End of Life Doulas
Now there is a group of people who are trained to elevate the conversation around death. They are called end of life doulas or “death doulas”. “Doula” is a Greek word meaning “female servant” or “female who serves”; it is commonly associated with the birth and the beginning of life. Just as a birth doula helps to create a birth plan, an end-of-life doula helps to create a death plan. He or she will work with the dying person and their family to create the end-of-life experience that best suits the patient and the family.
Different than a hospice care worker whose main concern is keeping a patient comfortable during their last days, a death doula helps and guides people through their last days of life. Their role is multi-fold for both the patient and the families. They help guide conversations about what the dying need and want to communicate that to others; they give caregivers and family members much needed rest so that they can be rested and engaged in the last moments. They also help both the dying and the living understand the experience of dying.
While there are many end-of-life doulas now, the first official training program was created by Henry Fersko-Weiss, LCSW, in 2003. At that time he was a social worker in a hospice center in New York City. Hospice workers used volunteers to visit people in their last days of life, but many did not sit vigil in the very last moments.
My experience as a hospice social worker showed a need to make the dying experience different,” said Fersko-Weiss. “There was no one doing that, being with people who were dying while they were dying. And no one was helping the families understand what was happening with their loved ones as they were dying.”
Death is not pretty. In fact it can be messy. There are a host of emotions to deal with, questions to ask and be answered, physical needs to attend to and family dynamics to navigate. An end-of-life doula is a guide and brings deeper meaning and a richer experience to the last few months, days and hours of life.
Fersko-Weiss leaned on his knowledge as a social worker to understand the stages of both death and grieving. In speaking to a friend who was a birth doula about his experience, he realized the need for a death doula. He spent a year creating a three-phase process that eventually became the groundwork for the first-ever end-of-life doula training and the International End of Life Doula Association (INELDA.org).
This three-phased process is aimed at helping the dying exercise control over their remaining time and how they spend it. It also gives the gifts of control and purpose to the dying, who often feel that they have neither. “It’s not about waiting for the end, it’s about living with purpose and meaning through the end, to the very last breath,” explained Fersko-Weiss in a phone conversation.
Life Meaning and Legacy
The first phase works with the dying person to examine the meaning of their life. The doula and patient review what they’ve learned, their values, what they did or did not do well, and what they are leaving behind or hope to leave behind. As they facing death, what was the meaning of their life? This is a process most people go through naturally; a doula helps them examine and make sense of it. They then create a legacy project to complete prior to their death. This project can be their memories, the lessons they’ve learned or anything that helps them feel as though they’ve left a gift behind for their families that can be treasured. Then the doula and the person dying create a plan for the unfolding of their last days. Much like a birth plan, the death plan lays out their wishes and desires, how they want to be touched and held, how they want to have interactions with others and how they want to set up their space. The plan pays attention to all five senses by incorporating taste, touch, sight, smell and, especially, hearing. “Hearing is the last sense to go,” explains Barbara Slaine, owner of the Liphe Balance Center in Weston and founder of the Alliance for Conscious Transitioning (TheAllianceforConsciousTransitioning.Org). “So we want to ensure that right up to the last breath, we are letting them hear something meaningful to them. We have had women who sing people in to the beyond.”
Slaine notes, “People don’t realize they have options, so they go like lemmings. But being aware of our mortality makes us much more conscious of the present. We have choices. We choose how we bring a life into this world, it only makes sense that we have choices when leaving this world.”
The second phase of the process, the vigil, occurs when the person is actively dying, which can happen from two to four hours or up to eight to 10 days. The end-of-life doula or doulas work in shifts over 24-hour periods to ensure that the person is never alone. This provides respite for the caregivers and families and allows them to be fully present in the last moments of life.
“The process of watching someone die can be traumatic for loved ones,” Fersko-Weiss noted. “End-of-life doulas are trained to know the signs of a person’s last moments. They can then alert loved ones when it is time and explain the physical process that is happening so that it is less frightening.” Having a doula in the home also relieves the fear of what to do if the person dies in the middle of the night or when the caregiver falls asleep.
The vigil is also the time when the doula and the dying can finish any legacy work; the doula can support the dying spiritually and emotionally in addition to bringing in rituals that have meaning to the person and the family. “The U.S. has a very death-phobic culture,” said Slaine. “We are able to bring in intercultural practices and open up the sacred path to death. It can be very powerful for both the dying and the living.” Doulas may do energy work, pray, sing or bring in other practitioners to help both the dying and the living transition to the next phase in life.
Finally, after the passing of the person, the doula meets again with the family to reprocess the active dying experience. They can sort through the various emotions, reframe experiences and give back beautiful and touching memories. The intention is to bring greater balance to the way survivors begin to grieve. It is during this time that the doula and family review the legacy project, work through traumatic experiences associated with death and talk through the experience as a whole.
By elevating the conversation around death, end-of-life doulas and organizations like the Alliance for Conscious Transitioning are helping people choose how their soul leaves the world to make it a meaningful experience for all involved.