Death doulas are changing how we talk about death

“When you look at death in a more conscious way it invites you to look at life in a more conscious way. When you honor your death, you are honoring your life.” -- Nicole Setty

 Meesh /(CC BY 2.0)

What is a death doula? A doula for the dying – or death doula – is part of a newly marketed ancient tradition helping people navigate their end-of-life journey. A death doula is a person who takes on the responsibility of holding space with you while you transition. This is an important commitment. To some, it is even sacred. A doula for the dying masters the gentle fusion of tenderness and practicality. There is an art to it.

There is a logical reason – beyond marketing – for the emergence of death doulas in recent years.   It’s particularly evident when you look at the state of dying in America. According to CNN, 70% of Americans would prefer to die at home. However, based on information from the Center for Disease Control, the same amount actually die in a hospital, nursing home, or long-term care facility. Furthermore, less than a third of Americans have an advance directive or living will. Even when they do, most doctors aren’t aware of their patient’s wishes. If that’s not telling enough, consider the fact that the number of people living with one or more chronic diseases is predicted to hit 157 million by 2020. Seven out of ten Americans die from chronic disease.

Death isn’t new. It’s always been a thing. Despite the very Western ethos of keeping people alive as long as possible, death is not going to stop happening any time soon. In fact, it’s not going to stop happening. Ever. Period. However, perhaps because of that mindset, the wishes of the dying are largely overlooked. A death doula helps bridge that gap.

Deaf doulas fare helping us get reacquainted with the reality of dying. Not only are they enabling us to have a more active conversation about death in general, but they are also helping amplify the voices of dying people so that they are heard above the din.

In sacred terms, a death doula could be called an evangelist, or perhaps even an angel of mercy. Death doulas provide strong support for those walking through the Valley of the Shadow of Death. In secular speak, they are activists, advocates, teachers, caregivers. They’re a broad and growing group of humans trying to give the rest of us real talk about a subject often misunderstood. For example, while many view death as the end of the road, some death doulas take a different perspective. “Death can be a rite of passage,” says Nicole Setty, a death doula, and owner of Body Brain Wisdom, based in Boulder, Colorado.

Setty was trained as a death doula in 2015 by a group called the Conscious Dying Institute, which was founded by Tarron Estes, one of the leaders of the Death Positive Movement. As part of its mission, the Institute “responds to a deep collective call to give and receive life-affirming care, before, nearing, and after death.” However, the work that Setty and her cohorts provide isn’t only for the dying. 

“One of the things we’re working on now is a program called the Best 3 Months. It’s a way of looking at all the different areas of your life and seeing what needs completion, even if you’re not dying,” she states.

The program uses the platform of death as a foundation for helping participants better appreciate and utilize life.  “We’re guiding a person from their current reality to the vision of where they want to be [before they die],” says Setty. “When you look at death in a more conscious way it invites you to look at life in a more conscious way. When you honor your death, you are honoring your life.”

For many a death doula, a key part of their work is to help “define the dying process” for those in transition. They provide conscious care guided by the wishes of patients and families. This means that, for a death doula, the death conversation is as much about what they are able to receive, as it is about what they can express. 

In our often masculine, directive, doing-focused societies, this is important. As Setty puts it, 

“Death doulas are a listening presence, a healing presence. These are qualities overlooked in our patriarchal society, whether it’s around death or life in general. Speaking to feminine qualities like yielding, flow, presence, the nonlinear – we need more of this in our lives.”

Even when considering the verbal changes many death doulas hope for, the focus is on shifting the verbiage away from the masculine idea of winning and losing to a more feminine embrace of natural cycles. “With medical people, it’s a failure if you die. [We’re in the process of] changing the language around it.” “We want [the dying] to leave this world at peace,” says Setty.

Sometimes, can’t death be seen as a failure, not on the part of the dying person – but certainly on the parts of governmental, corporate, or societal systems whose institutionalized biased can lead to more frequent, violent, and unnecessary deaths for some groups, while others remain much more protected from an undesirable demise? In much of the world, death is not only physical, psychological, and emotional. It is also political.

Death doulas aren’t ignoring this conversation. Sarah Hoops, a doula for the dying working in the Washington, DC metropolitan area, is very aware of the social disparities that lead to unfair variances in how people experience death. In addition to serving through her private business Holding Space Together, she works with Joseph’s House, a nonprofit care center. Joseph’s House cares for underserved and outcast groups, like the homeless and clients with HIV/AIDS. It also advocates for racial justice.

“You can’t deal with death in Washington [DC] without talking about race and racial justice,” Hoops says.

Unlike many death doulas in her field, whose clients are mostly baby boomers, Hoops works with a lot of younger people, “whose deaths could have been prevented if we had a safer community for people to live in.” According to her, there is “heartbreaking oppression and trauma that ends up killing [some] people,” as systemic inequality can be both a factor in the prevalence of unnecessary mortality and a barrier to its prevention. In this sense, all death isn’t natural, nor should it be embraced as such. “We can’t talk about death without talking about police brutality… and no, I do not have a ‘death is natural’ view of that,” she says.

Hoops also points out that the idea that death is out of sight and out of mind until we are confronted with it in our 60s, 70s, or 80s isn’t true for everyone. “There are some people who really are surrounded by death all the time,” she says. Her clientele includes those who may have experienced death-related trauma one or many times during their lives. She avoids whitewashing the experience by holding space and advocating for those whose concept of death has been shaped by their social realities. She states it clearly: “Death is not coincidental and death disparity is not coincidental. It doesn’t do any good to depoliticize [death] work. In fact, it does great harm.”

In addition to being subject to the realities of marginalization and privilege, dying is a highly individualized process for each person. Alua Arthur, a death doula, end of life planner, and owner of Los Angeles-based Going With Grace, provides broad range of holistic support for the dying. In doing so, she’s able to go into detailed talks with her clients about their particular needs and desires.

When helping them feel through the question, “what would a peaceful dying look like for you?” she encourages clients to consider even the seemingly minute elements and incorporate them into their plans. “Do you want the TV on or off? How much pain medication do you want? When you have a headache now, do you take something, or do you just tough it out? These are important things to know… things that don’t seem important can cause an emotional response when you’re actually doing it,” she says. 

Apparently, it’s not just talking about death, but talking about your death in depth that has the potential to change our experience of it.

Talking about dying with certainty is also a factor. “The insurance industry, for instance”, says Arthur, “likes to put everything in terms of ‘if’ something happens to you. But it’s not an ‘if,’ it’s a ‘when.’” She references this phenomenon as part of the “culture of resistance” we have around talking about dying. “If we can live with the awareness of [death] constantly, and if we can stay in surrender to that reality constantly,” she suggests, “it does make for a more peaceful death, not only for ourselves but for family members.”

She offers a further suggestion for how family and close community can tweak their internal dialogue during a loved one’s final weeks or days – think less about you, and more about them. “When we think about somebody dying, we think about all the loss we’re going to feel. But they are losing everything… When we can keep the focus on the person dying and not just ourselves, it creates a lot of space for us to honor them.”

A death doula for the dying like Nicole Setty, Sarah Hoops, and Alua Arthur are all unique voices in the ongoing cultural conversation around death and dying. Contributions by death doulas are helping to shape the path of a movement that – hopefully – will direct us toward a saner and more sacred perspective on one of the most universal aspects of the human experience.