In 2020, Belle Sandella’s 47-year-old cousin was diagnosed with glioblastoma, an aggressive brain cancer. He was given three months to live. When Sandella, a registered nurse who worked in telemetry and interventional radiology at the time, arrived at his bedside, she asked him a question.

“I said, ‘Do you want me to walk this journey with you?’ and he said yes,” she recalls. “And that’s what happened. And it was the most fulfilling, gut-wrenching, beautiful, sacred experience of my life.”

For Sandella, of Wyndmoor, that experience ultimately inspired the beginning of a new journey of her own. She had enjoyed working with patients, but knew she was burning out. Spurred in part by the experience with her cousin, she retired as a nurse and took training to become an end-of-life doula — sometimes called a death doula — and life advocate, providing emotional, non-medical and even spiritual support to those who are dying or facing life-altering illness.

Not everyone dies — or even lives out difficult diagnoses — on their own terms. Sandella’s mission is to help her clients do just that. It’s not hospice care, Sandella stresses, but it is often a bridge to palliative care and hospice.

She recalls one woman in particular. “She didn’t have a life-limiting diagnosis, but she was 82 years old and she was ready,” Sandella explains. “It was time to go for her. She had lived her life and she chose VSED, which is voluntarily stopping eating and drinking. So, she looked for support from me for that journey of hers.” (Editor’s note: VSED is legal in all 50 states, assuming the person making that choice is mentally competent.)

In another case, the daughters of a women with dementia hired round-the-clock doula support.

“When we were with this woman with dementia, who’s 95, we’re acting as companions,” she explains. “But when we’re with the daughters, that’s when the real ‘doula stuff’ is coming out where we’re holding the space for anticipatory grief.”

She has heard from wives who say their terminally ill spouses aren’t yet ready for hospice, but they just want to talk. “And then we find out, indeed, that her husband is ready for hospice,” Sandella says. “Nobody really sat down and had that conversation. With her or him.”

Sandella made the career transition to end-of-life doula in 2021. She took training from an organization called INELDA (International End of Life Doula Association), and something clicked.

“That was the first time I had ever heard of an end-of-life doula,” she says. “That was my initial training. And I was trained by one of the founders, Henry Fersko-Weiss, and it was game-changing. That was back during COVID, so it was all online. It was a couple of nights a week and then really long weekends, like 10 to 5.”

The training, she says, “caught me off guard. It was so authentic. It was such good training, and it shaped who I was.”

Sandella followed up with training at Emberlight in Swannanoa, N.C., a nonprofit community care facility operating as an Omega Home — part of a nationwide movement demonstrating a new social model of end-of-life hospice care — which sponsors an intensive death doula certificate program.

Being a doula, she says, is easier in its way than being a nurse.

“God bless INELDA because it was through that certification program … that I was able to figure out what I was missing,” she says, “because I was really getting burned out and I couldn’t figure out what was wrong and I was spinning my wheels. I was doing a good job with the clients, but it was really draining me.”

All of that training comes in handy when not everyone in the dying person’s circle of care agrees.

She recalls a client who had 24-hour nursing care.

“Her caregivers had known this woman for years,” she says. “Then it was time for hospice and there was a little bit of clashing between the 24-hour caregivers and the hospice team. Hospice would write a set of orders to be done, and the caregivers would say, absolutely not. I’m not going to do that because that’s going to kill her. Or she can eat, she’s fine. Or, if I don’t offer her something to eat, she’ll die. I couldn’t figure out what the problem was, but I was able to tease it out. I was able to bridge the gap. I did a lot of education on what drugs do and how they could help. I was able to make the caregivers part of the team.”

Sandella is taking her skills to another level. She is working with several other doulas to create the first Omega Home in Philadelphia. Residents must be enrolled in a hospice service, and there will be no more than three residents at a time who, for whatever reason, cannot die at home.

Working as an end-of-life doula does pose personal challenges, she says, but in the end it’s all worthwhile.

“It gets hard,” she says. “It depends on the client. I had a couple of clients in particular that I really had a hard time with.”

But, she says, “I’m so honored and privileged to be doing the work … It’s a gift.”