“There are so many ways to look at death. I try to talk about it a lot,” says Cara Campbell. “People shy away at first. But then, when something happens, they need someone to talk to.”
Cara Campbell is a certified end-of-life doula, a role that is just beginning to take shape in the United States. Also referred to as a “death doula,” this person can support a dying person and their loved ones in a variety of ways, from guidance on writing a living will, to coordinating hospice care, to helping plan a celebration of life or legacy project. The field is growing; the National End-of-Life Doula Alliance, founded in 2018, now has more than 1,400 members throughout the United States. Training programs—including a professional certificate program offered at UVM, which Cara attended—are advocating for the advancement of the field.
End-of-life doulas are trained to navigate the complexities of end-of-life care, offer emotional support, and empower individuals to make informed decisions about their final days, Cara explains. The client-doula relationship is different for each family.
“I remember meeting someone whose father had just received a terminal diagnosis. I handed her my pamphlet, but she said she didn’t need me, because her dad wasn’t dying; he was beating cancer. But she came back to me a few weeks later. ‘You know,’ she said, ‘it would be nice to have a letter from my dad. Can you interview him?’ When I interviewed her father, he said, ‘I know I’m dying, but my kids don’t believe it. Can you help them?’”
This, says Cara, is often how the work begins.
Turning personal experience into a career
Cara, now 39, grew up in Connecticut and moved to Lyndonville several years ago after the losses of several close family members. She reconnected with remaining relatives in Vermont’s Northeast Kingdom, started working at Northern Vermont Regional Hospital, and decided to pursue formal training that would help her use her years of caregiving experience to help others.
“I come from a special needs family,” Cara explains. “After my aunt passed away, I became the legal guardian for my cousin Jackie,” who was born with muscular dystrophy and cerebral palsy. After Jackie died unexpectedly, her grandmother passed away, and another cousin died after a long battle with brain cancer. “I lost three of the closest women in my life within a really short time. It was rough.”
While she worked through her own grief, Cara also helped her aunts and cousins manage the practical “to-dos” throughout the process. “I knew what they needed, and I was able to jump in and do it,” Cara recalls.
Connecting with VSAC
When Cara moved to Vermont, she got her LNA license, a role she says felt very familiar after taking care of her cousin growing up. Seeing a need to provide additional support beyond the hospital, she then decided to pursue a degree in social work. When Cara mentioned that interest one day to a hospital colleague, her co-worker said, “You’ve got to call Marti.” So she set up a meeting with Marti Kingsley, VSAC’s adult-education outreach counselor in the region, and she hasn’t looked back.
“Marti is gold,” Cara says. “At our first meeting, she asked, ‘How can I encourage you?’” Marti helped Cara line up grants and scholarships for her first semester at CCV, which covered tuition and some additional expenses, and taught her how to get the most out of the financial help that was available.
Cara is now halfway through her associate degree in social work, taking classes mostly online, and she plans to go on to her bachelor’s. When a CCV classmate told her about UVM’s end-of-life doula certification program, Cara mentioned it to Marti, who immediately said, “I think we can get you a grant for that,” Cara recalls.
“You leave a meeting with Marti, and you feel like you’re superwoman,” says Cara. “She empowers people. She’s made a huge difference in my education.”
The many roles of an end-of-life doula
An end-of-life doula’s tasks can include the practical and the emotional, and they vary greatly based upon the needs and wishes of the client, which can be the dying person, the family, or both.
“Some people are going to want a lot of help. Others might not want you around much,” Cara explains. “Everyone’s grief is very different. It can be a tricky process to fit in where it’s most appropriate. You have to figure out what they’re looking for.”
While spiritual and religious beliefs, final wishes and family relationships all vary greatly from person to person, one thing that all clients have in common, Cara says, is feeling like they’re losing control. Beyond the obvious—a person’s life is coming to an end, sometimes before they’re ready—the dying person often feels they’ve lost their voice.
“You’re told you have to go to this and that appointment, take this medication, eat this, drink this. Often, nobody asks you if and how you want to do those things. As a doula, I try to give them some power back and give them the chance to make choices,” Cara says.
Many dying people are also very concerned about leaving their loved ones behind. Legacy projects, such as scrapbooks, letters, videos, planting a garden or passing on beloved collections, are a good way to alleviate those anxieties, and doulas often help with those. “Loved ones receive special mementoes, and the dying person doesn’t feel they’ll be forgotten,” says Cara.
One of the most important things an end-of-life doula can give family members is time. “Sometimes family members reach out, and I may never meet the dying person. But I help the family make phone calls, run errands, maybe walk their dog, so they can spend more time with their loved one and be more present.”
UVM’s eight-week professional certification program, says Cara, was intense and introspective. It covered all the ways a doula can help people, introduced different legacy projects, and provided information and context that helps a doula approach every client with respect and compassion. “There was a lot of training on different religious traditions and on the different ways that grief manifests,” says Cara. “Probably the most important thing about working in this field is that you want to be able to see things from a lot of different viewpoints, and this class supported that.”
“Death can be scary,” she says. “But you don’t have to do it alone.”
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Read the story on VTDigger here: Making a difficult time in life a little more bearable .