Doulas support end-of-life transitions
As an intensive care nurse at the Medical College of Virginia in Richmond for 22 years, Shelby Kirillin saw people at their most vulnerable time.
“I felt that a lot was missing in the way we treated patients that were dying and their families. Death was handled as a medical experience … with no emotional or spiritual support,” Kirillin said.
“Death must be acknowledged. In a way, it is as significant a moment as is birth. There is a lost art to taking care of our dying. It should be treated as a sacred moment, not to be minimized or denied.”
So in 2015, Kirillin launched her own company, A Peaceful Passing, to help ease patients through life’s final transition. She’s also a lead instructor for the International End-of-Life Doulas Alliance, the international organization that provides training for people in her line of work.
An end-of-life doula is a professional trained to care for a terminally ill person’s physical, emotional and spiritual needs during the death process. There are many terms used to refer to an end-of-life doula, including “end-of-life coach,” “soul midwife,” “death midwife” or “transition guide.”
What doulas do
End-of-life doulas can provide companionship, respite care, legacy letters to families, photo albums, supportive services, advance care planning and support, resource location, meal help, grocery and other errand assistance, massages, rides to medical appointments and phone support.
“With a doula, you have the ability to write the last chapter of your life. Requests can include vigils, legacy, family, what they want the doctors and nurses to do — as in ‘Don’t talk about me in the third person like I’m not here’ — or simply being able to talk freely about what is happening to them,” Kirillin said.
Services can be divided into three components: advance planning, active death support and post-death affairs. Although end-of-life doulas don’t perform medical duties, they may assist hospice workers. Costs vary from $50 to $150 an hour or more, depending on the location. Most doulas offer sliding-scale prices.
Hiring a doula can help family members avoid painful discussions. The imminent loss of a loved one, Kirillin said, “is often hard to talk with relatives about, as they don’t want to discuss or believe it is going to happen.”
To help facilitate these conversations, in 2016 Kirillin started a Death Café, meetings for people who simply wanted to talk about death — their own or others. About 20 people attended until COVID stopped their meetings, but she hopes to resume them this year.
Supporting clients is ‘gratifying’
Three years ago, Kirillin added her friend Nicola (Nicky) Hansen as a partner. Hansen was living in the U.S. when her father died suddenly in the U.K. She was devastated that she wasn’t there for him or her mother and didn’t have the chance to say goodbye. So, Hansen began to do volunteer hospice work in Richmond and found it emotionally gratifying. What she could not give to her father she gave to others.
A Peaceful Passing was a natural fit for Hansen, she said.
“Each client is special. We are holding their hands — and the family’s hands — on this journey, so no one dies alone,” she said.
“A client can be with us for three hours or three years, depending on their needs and condition. It is a raw and scary time for family and patient, so it’s important to build trust with them first,” Hansen said.
That trust helps the patient open up. For instance, when one of Hansen’s clients seemed depressed, she engaged him in a long conversation.
“He relayed to me all the things he had done for others in his life. Through this conversation, he realized what a good life he had and how many people he helped. He was happy and content,” she said.
A Peaceful Passing also attempts to celebrate a person’s life before they die. One of Krillin’s patients loved hiking in First Landing State Park, she recalled. “We talked about a memorial for her, a bench at that site with her name on it. We were able to do this while she was alive, and she was so pleased.”
Another client, who was too tired to host visitors, yearned to connect with her friends and family, Kirillin said.
“We had them each write a letter about her with memories of experiences shared. We made a book of them, and she enjoyed this before she died.”
Best friend inspires lifelong career
As with Hansen’s experience, many end-of-life doulas begin their careers as the result of the loss of a relative or friend. Virginia resident Willow Kelly’s best friend, Colleen, was given a diagnosis of terminal cancer, and she wanted to handle her illness and death in as positive a way as possible. She found it easier to talk to Kelly about her impending death than her family members.
Kelly helped Colleen with a myriad of tasks she could no longer handle by herself. With Kelly’s help, for instance, Colleen planned a “dying retreat,” inviting 15 close friends and family members to spend a weekend at a resort to talk about her care, her death and her funeral. After talking about Colleen’s life and imminent death, they understood exactly how to help her and what their roles would be in her last days. Colleen found the weekend “wonderful,” a final bonding experience during which family and friends shared their deepest feelings and best memories.
Helping Colleen through this process, Kelly said, was the most rewarding thing she had ever done, so in 2015 she decided to make it her life’s work. Four years later she received an End-of-Life Doula Professional Certificate from the Larner College of Medicine at the University of Vermont.
Kelly and other end-of-life doulas report that many clients have “seen” deceased friends and relatives prior to death. One of Kelly’s hospice cases was a gentleman who was in and out of consciousness.
“One day he said to me, “Willow, I have no context for this, but these people are all here to see me. He happily reached out his arms to shake their hands and connect with them,” Kelly recalled.
In addition to in-person bedside assistance, Kelly and other end-of-life doulas can provide “virtual” online end-of-life help, especially during the past year.
“I was meant to do this kind of work,” Kelly said. “It is so fulfilling to be able to make people’s lives so much richer at such a difficult time.”