By Ilana Kapla
Christy Marek, a certified end-of-life doula, has seen firsthand the added stress that terminally ill individuals have had to endure because of the pandemic. One client had been living at home but decided that her health was putting too much added stress on her family. “She had considered going into a facility just so that she could get the level of support that she needed as she was becoming bed-bound,” says Marek, who is based in Minnesota. But the client found herself at a crossroads: she had to choose between the possibility of dying alone in a facility (upon admission, patients were required to quarantine alone with no visitation for two weeks) or continuing to rely on family care while spending the rest of her time at home.
Marek made several phone calls to facilities to advocate for her client. “I said, ‘What if she doesn’t have two weeks? What are you going to do?’” Marek recalls. Ultimately, her client ended up getting 24-hour home care, but it wasn’t her first choice. “People are then dying at home because the last thing they want is to go into a facility,” says Marek. “They don’t have time to quarantine for the amount of time that [facilities] need.”
For centuries, doulas have been assisting with childbirth, providing emotional, physical, and educational support during pregnancy, labor, and delivery. But there aren’t just doulas for the birthing process: over time, both officially and unofficially, end-of-life doulas have emerged to help individuals with palliative care and support their families through the grief that comes with losing someone. A 2017 study found that women who had continuous support during their labor—whether from a nurse, doula, or partner—reported a more positive birth experience. It seems likely that the same kind of constant emotional support from a death doula would have an equally positive effect on processing the grief around passing.
In a year when death and grief have become a constant, the palliative care process has reached a new level of complexity amid COVID-19. End-of-life doulas have always strived to be a support system for those who are terminally ill, but in 2020 the people who take on that responsibility have been challenged to think outside the box when it comes to caregiving. They’ve had to help their dying clients make unimaginable choices between risking virus exposure and spending their last days alone. They’ve also had their presence questioned at a time when their skills could be most valuable.
Alua Arthur, an end-of-life doula and founder of Going With Grace, has been trying to encourage clients to focus on what they do have control over, even when the world feels full of uncertainty. “Because they’re getting close to the end of life, I remind them that there are some things that are still firmly within our control,” says Alua. “[I have them] look at what it is that we’re trying to control and where the control actually exists. She has her clients work on “cultivating presence and practicing adaptability,” along with “exercises, like finding our feet and consistently planting our feet firmly on the ground [and] becoming present.”
Communication and connection have been the most challenging variables for doulas and their clients. Many in-person meetings with clients and their families have gone digital. For Arthur, FaceTime and Zoom have become essential for helping with clients’ health-related questions when she can’t physically be with them. “Family members [can] scan body parts through a video call, show me and say, ‘Does that look normal?’ Or, ‘She’s breathing like this, does that sound normal?’ And [they] hold the phone up [for me to hear] somebody’s breathing pattern.” That way, even if Arthur is not with the client, she can make an informed decision as to whether they should call the doctor. Arthur has also hosted webinars to help people experience grief and facilitate rituals for transitioning. She has helped coordinate with funeral homes to livestream funerals for clients so that more family members could participate.
For clients who are in assisted-living communities or the hospital, nurses often act as a bridge on behalf of doulas. Janie Rakow, a recently retired end-of-life doula and former president of the International End of Life Doula Association (INELDA), has been raising money for baby monitors for local hospitals so that doulas can keep in touch with their clients, talk to social workers and chaplains, and even play music. “Nurses and medical staff have been integral in helping doulas make sure they connect with families and play music until the end,” she says.
Omisade Burney-Scott, a full-spectrum doula based in North Carolina, has been encouraging her clients to “think about how you show up energetically when you can’t show up physically.”
“Because I’m a Southern Black woman, there’s so much ritual involved with death and dying in the South with Black folk,” says Burney-Scott. “It’s beautiful, it’s complex, but it’s highly ritualized.” Grieving has generally involved a lot of face-to-face interactions and “people coming to your house dropping off casserole after casserole,” so during the pandemic Burney-Scott has tried to help her clients try to find alternate activities that will create a similar feeling of closeness and community. One client with relatives spread throughout the United States and Europe had lost two family members and was looking to honor the deceased. “My question for this person was, ‘Where are they from? What are the things that are meaningful for your family? What are the things that you all love to do together?’ And one of the things that we talked about was food and how much food is a core part of their family culture.” Since their family already did a Zoom session every Sunday, Burney-Scott suggested that they make a dish that everybody in the family loves for their meeting. “Then, when you come to the Zoom call, y’all eat together and honor this person or these people who’ve made their transition,” Burney-Scott says.
End-of-life doulas also help their clients navigate and find support within a racist healthcare system. A 2017 study from Academic Emergency Medicine on implicit bias revealed that White patients were favored, especially by White doctors. Coronavirus has been two times as likely to kill Black and Latino people than White people. In June, Arthur was a panelist for a talk where she and other Black death doulas, along with grief and funeral professionals, discussed the implications of a “good death” in a racist society. More than 2,000 people signed up for the webinar, which touched on the “implicit bias that exists against Black workers, Black deceased and patrons of their families.” “I don’t know how many times I’ve heard people say that racism or race should not be a factor in how we care for people at the end of the day,” says Arthur. “But in order for us to effectively care for people in the afterlife, we have to honor the reality of their lived experience. That includes race, their physical ability, [their] ability to hear, color, sexual orientation, gender identity, and every little part of themselves. We’re honoring a life, so we have to look at the whole life.”
Burney-Scott has been helping members of the Black community process continued grief after the killings of George Floyd, Breonna Taylor, and Ahmaud Arbery and amid continued police brutality and the Black Lives Matter movement. “Grief is not an emotion that is mutually exclusive to physical death,” says Burney-Scott. “So what I have found is that there’s been an unrelenting nature to the grief that we’re all experiencing right now with the pandemic, with COVID-19, but also with racism and white supremacy.” Burney-Scott has been looking to her spiritual background to provide support for others. “My role in that has been to provide instructions and support around how to create your own altar, how to open your space and yourself up to either meditation, prayer, or conversation with your ancestors to ask for support for these families who have experienced the unimaginable,” she says.
More than ever, it’s been necessary for doulas to focus on possibility and opportunity as a way to keep their clients comforted and connected. Still, the challenges of limited physical interactions and restrictions due to COVID-19 have transformed their jobs. In the meantime, end-of-life doulas are doing everything they can to be there for their clients.“We support and empower,” Arthur says. “Why? Because we don’t want people to feel alone in the process. How? We show up.”
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